tag:blogger.com,1999:blog-89428636867059863012024-03-05T19:28:31.995-08:00I'm not crazy-----i am autistic!!!!!Melissahttp://www.blogger.com/profile/17458872329425009616noreply@blogger.comBlogger173125tag:blogger.com,1999:blog-8942863686705986301.post-60600396156636826312022-11-24T12:31:00.002-08:002022-11-24T12:31:40.709-08:00Today<p> <span style="background-color: white; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px;">I am going to say it again</span></p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I wish to the highest God</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">that I had been born</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">into a family where I was celebrated</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Instead of a family who has always thought of me</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">as their “embarrassment”.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I am still here</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Today</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">at age 62</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">only because</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">of this set in my head fear</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">that I could go straight to this</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">awful eternal place of burning fire</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">called hell when I die</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">if I were to take my own life</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Even so, I find myself thinking about dying</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">every single day.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Because</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I have a family</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">who thinks I embarrass them</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Because my family thinks of me</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">as a shame</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">and a walking talking Problem</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Most of them all moved out of state</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">during the 90’s and early 2000’s</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Now I have none of them</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">even my mother thinks of me</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">as a Problem, a monster</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">and an embarrassment</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">because I am loud</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">goofy silly about shiny hair</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">and I make goofy noises</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">All I have ever longed for is to be loved</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">for who I am</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">that is all</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I am autistic</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I was born autistic</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">why oh why</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">can’t you all get that once and for all????</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Today</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">is a day where, in America</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">where</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">we celebrate a day called Thanksgiving</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">but I recently learned</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">our Thanksgiving is</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">actually a white-washed account</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">of</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">what was truly a horrific evil</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">genocide</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">of</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">the Indigenous People who lived here first</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">who lived here peacefully until</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">white European Christians</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">decided to</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">invade and convert them</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">via violence</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">against their will</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">to</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">narrow-minded</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">bigoted</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">white Christianity</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">because well,</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">white Christianity</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">does not respect</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">other people’s</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">belief</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">and</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">faith</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">systems</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">So I no longer celebrate this day</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">however I am still hyper-aware that families</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">all across America use this day to</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">still get together</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">under one roof and</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">give thanks for their blessings</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">and they enjoy</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">loud rowdy football games on TV</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">and enjoy lots of good food</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">and what should be warm close fellowship</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">with one another</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">so I still feel the ache of loneliness today</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">on a day</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">when we should all be actually mourning</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">so many millions of Indigenous human lives lost</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">because of bigoted hateful Europeans who</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">just couldn’t and wouldn’t</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">stay in their lane</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">and let Turtle Island and its People alone</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">to live in peace</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">and harmony with nature.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Today</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I sit here alone and sad</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">for them</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">but also for me</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">because I feel as though</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I have nobody</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">in my family who truly accepts me</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">for who I am.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">And that, my friends,</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">is the worst feeling of all.</p>Melissahttp://www.blogger.com/profile/17458872329425009616noreply@blogger.com0tag:blogger.com,1999:blog-8942863686705986301.post-38119376945878279952022-10-30T21:44:00.001-07:002022-10-30T21:44:31.047-07:00How Did We Get Here?<p> <span style="background-color: white; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px;">How did we get here? To a world with so much division, hate and violence in it?</span></p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I am terrified of this year’s Election Day.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">We actually need to just start totally over, and get rid of all of the cruel corrupt capitalist colonizer garbage.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">We start by</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Land Back!</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">and</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Full reparations to all Black, Asian, AAPI, LatinX, Hispanic, Indigenous, Muslim, Middle Eastern folks who we have harmed, traumatized, squelched, r*ped, and murdered.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Full LGBTQIA+, trans and queer rights, and full reproductive rights and freedom. Codify Roe as law of the land!</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">An end to the bogus Nixon-era war on drugs and legalization of weed nationwide. And we need to expunge and pardon all who were convicted on all non-violent drug offenses.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">A brand new Constitution that has full civil rights, accessibility and freedom…. for all of us.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">A new government who actually will work FOR the people…all of us.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">A just and fair tax code that forces those who have ample wealth and riches, to pay their fair share.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Break up every single mega merger. AT&T, Comcast, Amazon, etc., have too much power.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I loved it when DirecTV was just…DirecTV. One could buy brand name satellite boxes then like RCA, Sony, Philips, and Hughes, that didn’t break down.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">When I could enjoy just XM Radio in my car. And there were stations like Ethel, Lucy, and Fred I could listen to. That were just like the FM radio of my teen years.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I am really upset and terrified though….we need to vote….</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">This isn’t just about radio stations and TV….the bigger and most important picture is that our very humanity and quality of life itself….</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">depends on this election.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">So we need to vote like it’s our life and death that’s at stake…..because it is. Literally. At stake.</p>Melissahttp://www.blogger.com/profile/17458872329425009616noreply@blogger.com0tag:blogger.com,1999:blog-8942863686705986301.post-40420666465141774862022-10-29T13:19:00.001-07:002022-10-29T13:19:25.626-07:00Another Broke & Lonely Saturday Cooped Up In My Tiny Wooden Box<p> <span style="background-color: white; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px;">I feel so utterly powerless today at the age of 62 years….and our upcoming election has me terrified, for all of us.</span></p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">If I was a billionaire right now, I know I would not hesitate to help to make other people’s lives better. As well as mine.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I can’t stand to see others suffer and do without.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">If I <a style="border: 0px; color: #21759b; margin: 0px; outline: none; padding: 0px; vertical-align: baseline;"></a>was a billionaire and I knew that my lifelong disabled niece who was never able to work their entire adult lives was suffering undue hardship because of that, I could not go to bed and have a restful sleep until I actively set them up with the help they need so that they would not have to continue to suffer undue hardship.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Enough with bootstraps. People do not come with them.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I don’t. I never did.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Yes, I am vaguebook taking to you, Aunt “Bee”. And to my family who hate me simply because I am loud, outspoken and hate racism, injustice and hate itself.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I was groomed to fail by a family my entire life who never accepted me or wanted me to even exist. Because they refused to understand my autism and get it—and me.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">So they hated on me and kept telling me all of the things I would never ever do or accomplish or be in life.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">This kind of talk sets kids up for failure and poverty, even jail and prison.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">No. I never have been in jail or prison. But my life has been an entire life of a looooong list of lost dreams and opportunities because of my family holding me back and hating who I was.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I was never lazy, folks. I did happen to do a lot of hard work growing up…housecleaning, dishes, cleaning kitchen counters and sinks, cleaning bathrooms, I even raked leaves and watered plants. I even picked up the tree branches of the apple trees my dad had pruned one year to make extra money when I was kicked off of my SSI for four long winter months.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">But my family always were on me when I would do my chores telling me always, I wasn’t doing my work good enough for their perfect standards.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">So I learned early on to give up and withdraw into my bedroom. To not even try…..</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Just so I could avoid the harsh criticism I got.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Never good enough.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Too loud.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Too weird.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Too….too….”different’.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">In my family, “different” was bad and wrong.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">And if they wanted me to write nice thigs about them, they should have, and could have done better.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;"><a href="https://www.facebook.com/hashtag/angryautistic?__eep__=6&__cft__[0]=AZViSr6D7THG1MEJi47UBG2BX3OFRS-hZ3kKl0gquA-aTaBKOCDWmO37jwQyJ-Fwy_FxQvC06uCWQe8pmDLlZzO-98bpP5I9I3ZppEr4Oka7sJYXtAt0iko6ThNZ0Q7V8mPafdkZ061AaekKFLoVDOOSHJQVEIFAb1tKXg1F6TLpBA&__tn__=*NK-R" style="border: 0px; color: #21759b; margin: 0px; outline: none; padding: 0px; vertical-align: baseline;">#AngryAutistic</a></p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;"><a href="https://www.facebook.com/hashtag/yeahimangry?__eep__=6&__cft__[0]=AZViSr6D7THG1MEJi47UBG2BX3OFRS-hZ3kKl0gquA-aTaBKOCDWmO37jwQyJ-Fwy_FxQvC06uCWQe8pmDLlZzO-98bpP5I9I3ZppEr4Oka7sJYXtAt0iko6ThNZ0Q7V8mPafdkZ061AaekKFLoVDOOSHJQVEIFAb1tKXg1F6TLpBA&__tn__=*NK-R" style="border: 0px; color: #21759b; margin: 0px; outline: none; padding: 0px; vertical-align: baseline;">#YeahImAngry</a></p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;"><a href="https://www.facebook.com/hashtag/angryatallivelostouton?__eep__=6&__cft__[0]=AZViSr6D7THG1MEJi47UBG2BX3OFRS-hZ3kKl0gquA-aTaBKOCDWmO37jwQyJ-Fwy_FxQvC06uCWQe8pmDLlZzO-98bpP5I9I3ZppEr4Oka7sJYXtAt0iko6ThNZ0Q7V8mPafdkZ061AaekKFLoVDOOSHJQVEIFAb1tKXg1F6TLpBA&__tn__=*NK-R" style="border: 0px; color: #21759b; margin: 0px; outline: none; padding: 0px; vertical-align: baseline;">#AngryAtAllIveLostOutOn</a></p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Image ID: A desk with an old classic typewriter on it. Text reads:</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">“You own everything that happened to you.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Tell your stories.</p><div><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">If people wanted you to write warmly about them, they should have behaved better”~~Anne Lamott</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;"><a href="https://www.facebook.com/photo/?fbid=10222088400576175&set=a.2917803141293&__cft__[0]=AZViSr6D7THG1MEJi47UBG2BX3OFRS-hZ3kKl0gquA-aTaBKOCDWmO37jwQyJ-Fwy_FxQvC06uCWQe8pmDLlZzO-98bpP5I9I3ZppEr4Oka7sJYXtAt0iko6ThNZ0Q7V8mPafdkZ061AaekKFLoVDOOSHJQVEIFAb1tKXg1F6TLpBA&__tn__=EH-R" style="border: 0px; color: #21759b; margin: 0px; outline: none; padding: 0px; vertical-align: baseline;"></a></p><figure class="wp-block-image" style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; margin: 0px 0px 1em; padding: 0px; vertical-align: baseline;"><a href="https://www.facebook.com/photo/?fbid=10222088400576175&set=a.2917803141293&__cft__[0]=AZViSr6D7THG1MEJi47UBG2BX3OFRS-hZ3kKl0gquA-aTaBKOCDWmO37jwQyJ-Fwy_FxQvC06uCWQe8pmDLlZzO-98bpP5I9I3ZppEr4Oka7sJYXtAt0iko6ThNZ0Q7V8mPafdkZ061AaekKFLoVDOOSHJQVEIFAb1tKXg1F6TLpBA&__tn__=EH-R" style="border: 0px; color: #21759b; margin: 0px; outline: none; padding: 0px; vertical-align: baseline;"><img alt="May be an image of text that says '"You own everything that happened to you. Tell your stories. If people wanted you to write warmly about them, they should' ve behaved better. -Anne Lamott'" scale="0" src="https://scontent-sjc3-1.xx.fbcdn.net/v/t39.30808-6/313405253_10222088400536174_656699222774245235_n.jpg?_nc_cat=106&ccb=1-7&_nc_sid=730e14&_nc_ohc=gdWZtIkHMncAX_lnvJ8&_nc_oc=AQkSJ29yjdlZENLT3lFMjoVV1UbDePysfS66rijmywW82tm0haefRSxoCoZalwHZY4V9neFHms-k3-7YA2C8A1m5&_nc_ht=scontent-sjc3-1.xx&oh=00_AfBYYLL99Gch6G9lvkNoo8kHH-n-4xUSc10tvfNqeHM-6w&oe=6363389B" style="border-radius: 3px; border: 0px; box-shadow: rgba(0, 0, 0, 0.2) 0px 1px 4px; box-sizing: border-box; height: auto; margin: 0px; max-width: 100%; padding: 0px; vertical-align: bottom;" /></a></figure></div>Melissahttp://www.blogger.com/profile/17458872329425009616noreply@blogger.com0tag:blogger.com,1999:blog-8942863686705986301.post-31770375583132719962022-10-13T12:42:00.006-07:002022-10-13T13:10:29.518-07:00I Need Help So I Can Have A Secure Future When My Mother Passes Away<p> <span face=""Open Sans", Helvetica, Arial, sans-serif" style="background-color: white; color: #444444; font-size: 14px;">I made this Go Fund Me page specifically because lifelong disabled me has literally zero family support when my mother passes away….</span></p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">When my mother passes away, I will definitely face losing my home, and my internet, TV service, and phones….my entire connection to the outside world….and my way to make my monthly bill payments.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">As in I will for the first time in my entire life be homeless and destitute.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Three of my siblings are thirsting to have me locked up forever to rot the rest of my days away in a nursing home or rest home where I will have no more independence and risk being abused even more than I have been by past caregivers.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Can <a style="border: 0px; color: #21759b; margin: 0px; outline: none; padding: 0px; vertical-align: baseline;"></a>someone please help me??????</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Having legit panic attacks right now because I cannot get my mom on the phone at all.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">And my mean sister still refuses to take ANY of my calls…I have done nothing to make my family hate me…..except just to hate me for being my fully autistic and outspoken self.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Update: My mom just called me and she is fine. But she is 93 years old, and although she is still in good health, I still worry myself sick because of her age and my circumstances.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I hope someone can help me.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;"><a href="https://www.gofundme.com/%E2%80%A6/im-disabled-alone-need-real&#8230" rel="nofollow" style="border: 0px; color: #21759b; margin: 0px; outline: none; padding: 0px; vertical-align: baseline;">https://www.gofundme.com/…/im-disabled-alone-need-real&#8230</a>;</p><div><br /></div><div id="atatags-370373-634869e661332" style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; margin: 0px; padding: 0px; vertical-align: baseline;"><div id="atatags-370373-634869e661332-video" style="border: 0px; height: auto; margin: 0px; overflow: hidden; padding: 0px; position: relative; vertical-align: baseline; width: 625px;"><div class="iowo-adv" style="border: 0px; margin: 0px; max-height: 382px; min-height: 0px; overflow: hidden; padding: 0px; transition: max-height 0.5s ease 0s; vertical-align: baseline;"></div></div></div>Melissahttp://www.blogger.com/profile/17458872329425009616noreply@blogger.com0tag:blogger.com,1999:blog-8942863686705986301.post-62297906139927963262022-08-02T17:30:00.001-07:002022-08-02T17:30:16.265-07:00An Update And New About Me<p> <span style="background-color: white; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px;">Hi, it’s me again! Sorry I haven’t blogged in awhile. I have mostly been posting on my Facebook and Twitter…..doing lots of writing via those two platforms. I mostly write about ableism, what it’s like being an autistic adult in a world that is still not built for autistics, and I also write about social justice / political things relating to disability rights, racism, bigotry, homophobia, transphobia, marginalized people, gun and police violence, and how our governmental leadership is seeking to roll back people’s rights to the 19th century Dark Ages again.</span></p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">So..first an update on how I’m doing.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I identify today, as Queer, Bi-Sexual, and Non-Binary. Contrary to what some may believe, this isn’t a choice, but the way I have felt since I was a child playing with my little brother and his Tonka trucks, and making huge mud holes in our backyard, just as much as I played with my Barbie dolls.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Just as much as my Autism is a huge part of all that I am, so is my sexual and gender identity. Take all the time you need to sit with this. It ain’t changin’, because this is me, full-on.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I’m still doing dialysis, but have still been having a rough time due to Nurse W, and two other impatient and rude ableistic techs. But they have now put me back out on the main floor, Side A, and Nurse W is now gone daddy gone, as in she has a new job somewhere else that’s away from my dialysis clinic, so I no longer have to be “graced” with her presence when I dialyze.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I am much happier on Side A, as I still have my customized chair with the specially-built leg rest for my legs, and I am once again working with the kidney center staff members with whom I have always gotten along with very well. I have a wonderful social worker there, too, who truly has my back.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Connie and her daughter Natalie are still my caregivers. I am slowly losing weight, for the sake of my mobility and health only.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">And now, I want to address some things, mainly some misconceptions that keep cropping up about me.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">To my eldest sister, whom I love with all of my being, of course I forgive you! I forgave you long ago when I wrote that open letter to all of my family members back in 1994, and you called me one afternoon and we talked things out. I also forgive my second eldest nice sister, who I have also gotten to talk to—she and I talked after my mom took a fall on New Year’s eve 2019, two month’s before COVID happened. (No worries, my mom is fine now.)</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I also forgive my eldest brother who passed away, who prayed for me daily when he was alive. And now, he is one of my guardian angels.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I also consider my mother to still be my best friend and ally. And to this day, I still call her at least once a day.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I am even finally starting to have positive dreams about my father now….and am beginning to forgive him for not getting and accepting me as I was when I was growing up.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">It is the rest of my living family who to this day, my other 3 siblings, nieces, nephews, and in laws, who still don’t get how much or how deeply they have hurt me, and who still think of me as their “batshit” sibling/relative who always had too many “problems” and meltdowns. They refuse to believe I was born Autistic, that I was born with a whole different wiring system, and that my Autism does not make me Less Than, broken, and wrong, nor did it ever make me their personal punching bag/scapegoat for all that they say has gone wrong in their lives, “because of me”.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">They still think of me as too weird and that I am an effing burden, who should just be shunned and shoved away in a nursing home, so I can risk being abused, neglected, and further isolated from the outside world and life.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I don’t “hold grudges” from my past. I am greatly traumatized by my past. There’s a difference.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Because that’s just how C-PTSD trauma, which I have, works.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">When things happen that hurts one’s vey spirit and being/core of who they are,</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">that one has had <strong style="border: 0px; margin: 0px; padding: 0px; vertical-align: baseline;"><em style="border: 0px; margin: 0px; padding: 0px; vertical-align: baseline;">no closure</em></strong> with,</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">and these things happen repeatedly, over and over and over again throughout one’s entire lifetime because they happen to have a disability they never got to, or refused to understand,</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">it causes deep and pervasive long term whole body affects: everything from nightmares, to flashbacks, (viscerally real flashbacks) to Rejection Sensitive Dysphoria, to deep trust and abandonment issues, to constant hypervigilence, and startle responses, to fight or flight mode, to eating binges, and gastro-intestinal effects, plus other fun tings like sleeping disruptions/insomnia, a weak immune system, headaches, and lots of other physical health issues. Including things like kidney disease. Yes, kidney disease.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Trauma, being made to feel unwanted and unwelcome, and unloved…. affects us from head to toe.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">And yes, this is shit I experience on an almost daily basis today. It breaks my heart that 3 of my siblings, and nieces and nephews, still won’t even try to have the hard conversations we need to have in order to make peace with one another.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">The hard conversations that me and my eldest sister did have from 1994 on to where she now does get me.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I do happen to have a deep faith. But I channel my personal faith by speaking out on the things that have actually always mattered to me: injustice, racism, bigotry, anti-LGBTQIA hate, disability rights and justice, people’s reproductive rights being upheld, the Separation Of Church And State being upheld, us having voting rights, and clean air, healthy trees, flowers and plants, and clean water.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">In 7th grade, Angela Davis was one of my heroes for how she spoke out on racism. She still is one of my heroes today.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I did not vote for Donald Trump, because he is an extremely evil soul….and the very antithesis of what Jesus was all about. You can take all the time you want with this too, but I am not a Trump supporter, never will I be, nor am I a Republican. I stopped being a Republican when they morphed into the Tea Party, and then cruel Trumpism came along.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I stopped being a Republican when I became informed.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Today, after reading America’s true history, and seeing way too many Black, Brown and Indigenous People still being appressed and murdered by police, and racist citizens, I am Left of Left, because I care to my very core about humanity, and I also do not believe it is my place to tell others what they can or cannot do with their own bodies.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I had many of these beliefs even when I was a moderate non-conservative Republican, and only was a GOP’er because it was what my family’s political party was.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I believe in a world that is just and fair and equal for all of humanity, not just those who share my same skin color.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I believe in Matthew 25 where Jesus says for us to welcome the immigrants and refugees, not cruelly separate their children from their parents and throw them into crowded filthy cages.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">To those in my family who support Trump and Trumpism, big shame on you. You were raised to know better than to stoop to that level of low.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">To my dear eldest sibling, I hate that I cannot sit down and pen you letters. I miss the days when you had internet and we emailed.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I seriously cannot handle handwriting letters anymore because of the executive functioning it takes, when I make mistakes or want to re-phrase something the whole page gets ripped up and I have to start over again, plus, sometimes my right hand shakes and same thing–I will rip the page up and start over.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">And since COVID happened I no longer go in stores myself so I can pick out a nice birthday card for you anymore. Or you would have a nice birthday card each year from me. By the way, I hope you have a happy birthday this year. <img alt="❤" class="emoji" draggable="false" role="img" scale="0" src="https://s0.wp.com/wp-content/mu-plugins/wpcom-smileys/twemoji/2/svg/2764.svg" style="background: none !important; border-radius: 3px; border: none !important; box-shadow: rgba(0, 0, 0, 0.2) 0px 1px 4px; display: inline !important; height: 1em !important; margin: 0px 0.07em !important; max-width: 100%; padding: 0px !important; vertical-align: -0.1em !important; width: 1em !important;" /> <img alt="❤" class="emoji" draggable="false" role="img" scale="0" src="https://s0.wp.com/wp-content/mu-plugins/wpcom-smileys/twemoji/2/svg/2764.svg" style="background: none !important; border-radius: 3px; border: none !important; box-shadow: rgba(0, 0, 0, 0.2) 0px 1px 4px; display: inline !important; height: 1em !important; margin: 0px 0.07em !important; max-width: 100%; padding: 0px !important; vertical-align: -0.1em !important; width: 1em !important;" /> <img alt="❤" class="emoji" draggable="false" role="img" scale="0" src="https://s0.wp.com/wp-content/mu-plugins/wpcom-smileys/twemoji/2/svg/2764.svg" style="background: none !important; border-radius: 3px; border: none !important; box-shadow: rgba(0, 0, 0, 0.2) 0px 1px 4px; display: inline !important; height: 1em !important; margin: 0px 0.07em !important; max-width: 100%; padding: 0px !important; vertical-align: -0.1em !important; width: 1em !important;" /></p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">And in closing, it is my fervent hope that before I leave this earth, I will get to finally achieve my lifelong dreams and goals, and that I will also be able to help others find their happy in life.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Peace!</p>Melissahttp://www.blogger.com/profile/17458872329425009616noreply@blogger.com0tag:blogger.com,1999:blog-8942863686705986301.post-71016339374037706112022-03-09T20:52:00.004-08:002022-03-09T20:52:46.399-08:00Being Punished For The Right To Live<p> <span style="background-color: white; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px;">It’s getting harder and harder for me, a full-on neuroqueer, neurodivergent Autistic adult, to handle going to in center dialysis anymore because the blowups just keep happening.</span></p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">Four hours a day tethered to a machine, 3 times every week, I do this just to keep on living.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">Even after educating them about autism and meltdowns, what they are and aren’t, they still revert back to calling it “behavior” and want to treat me with traumatizing ABA-style “behaviorism” that simply Does. Not. And. Will. Not. work with autistic people.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">One cannot pray or behaviorize our autism away because we are hardwired autistic from birth to our final breath.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">Autism is a Developmental Disability. It cannot be fixed and cured.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">It is always when my nurse and or tech are hectic-busy with other patients and I happen to need help right smack dab in the middle of it all, that tempers tend to flare on all sides.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">No one is being bad, no one’s to blame, only that dialysis clinics are often far too hectic paced in nature, and oftentimes fuses just get short on all sides.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I had a meltdown so bad today because</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">1) Nurse W was there—right in plain sight of me today,</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">and</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">2) my room acoustics were not there for me to sing to and enjoy.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">(I love to sing to the tune of the room acoustics and call them my “chestnuts” because of how they resonate in my ears and calm me down to hear them—all rooms have room tones, this is why people like singing in the shower)</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">They were flattened out due to the computer station being moved, changed them so I could not hear them anymore</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">—my nurse got impatient with me, and I melted down—</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">—-and because I melted down, they had to take me off the machine and send me home after just 30 minutes on the machine, because I was hitting my head and hitting my chest area.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">This is why I keep writing to educate all of you who do not know, how much we are disabled, not by our autism itself, but by the ignorance and impatience that we still get from non-autistics.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">So you all will know what to do and say to keep a meltdown from happening in the first place.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I don’t fault my nurse. I fault the fact that there needs to be four nurses per side instead of two, and even more techs than there are per patient. When a dialysis clinic is short-staffed,. even the best angel can lose their patience.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">How about just letting dialysis patients all have private rooms with each of us having a dedicated nurse and tech, instead of just lumping us all in side by side by side??? Like some clinics in Europe do?</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">But still—I have educated this clinic till I am blue in the face, and I still encounter these blow ups. These same and very preventable blow-ups.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">Nurse W was abusive. She was all levels of abusive and gaslighty. But she still works there, so I still have to see her from time to time.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">But my current nurse does not seem to have even one mean bone in her body.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">She happened to be dealing with a new patient today, and because I had flat room acoustics, my anxiety went sky high, and I kept pushing my call button. She finally lost her patience, and scolded me. This led to me blowing up right into a meltdown, complete with hitting myself—I was mainly shocked that my usually mild-mannered laid back nurse was scolding me, when I know she knows how pervasively deeply that affects me.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">Below is the poem I wrote to my social worker and to my nurse and nephrologist:</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I am sorry, I apologize</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I was not feeling well enough today</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">To be able to remain calm and controlled</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">In my dialysis chair</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">In the past two weeks I have discovered</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">that my chestnut noises are more resonant</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">and full-sounding</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">when the computer station is set a certain way</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">straight, against the wall</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I am sorry I couldn’t wait</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I am sorry I kept pushing the call button</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">when you were all busy</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I am sorry</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">That I cannot get along with you all like I would like to</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I do happen to love and care about you all</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I am not there to cause any of you hell</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I am in hell</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">because this clinic is not made for autistics like me</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I do those chestnut noises all during my treatment</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">to keep myself from having anxiety and then meltdowns</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">Please understand that</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I was upset because all of you kept pushing the computer away</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">and when you do that</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I lose my noises</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I am sorry that is so important to me</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I like and wish to God In Heaven</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">that all of you would all like me</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">and get me</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">that is all I ask</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">That you all will learn to get me, please</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">Please listen to me,</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">see me,</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">hear me</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I have to have these treatments</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">so I can live</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">So that I do not die</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">Please stop scolding me when I have a meltdown</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I cannot help those</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I can promise you</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">They are not a thing I choose to do</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">If you scold and judge me during a meltdown</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">It will escalate it and make it go to me hitting myself</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I am trying</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">to educate you on what autism IS so you know</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">Because of Today I really want to quit dialysis</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">Not because it’s self pity</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">but because I cannot always be what you expect me to be</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I have bad days</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I have days when I have zero spoons</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I am tired of going there</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">because sometimes you are too busy to give me what I need</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">Tired of making you all angry at me</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">for what I cannot help</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I just am so tired…………</p>Melissahttp://www.blogger.com/profile/17458872329425009616noreply@blogger.com0tag:blogger.com,1999:blog-8942863686705986301.post-39062902862389473992022-02-22T10:25:00.011-08:002022-02-22T11:23:28.625-08:00My Latest Medical Nightmare, Because This Review May Get Deleted Altogether By My Local Hospital–Yet Another Example Of Medical Ableism<p> </p><p><span style="background-color: white; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px;">CW: Detailed discussion of medical ableism in an emergency room hospital setting.</span></p><p><span face=""Open Sans", Helvetica, Arial, sans-serif" style="background-color: white; color: #444444; font-size: 14px;">The following is a review I wrote on my local hospital’s Facebook page last night which got hidden for some unknown reason, so I am posting this in my blog so it does not get lost.</span></p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">Although they do happen to shine in most other departments, and even their ER can be an awesome experience, I do not recommend going to Marian Regional Medical Center Santa Maria’s ER due to the awesome-turned-horrific experience I endured last Thursday, 2/17 to have my chest catheter exchanged for dialysis because I was unable to get an appointment for the cath lab to do it. And it needed to be done ASAP so I could continue my dialysis without interruption.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;"><strong style="border: 0px; margin: 0px; padding: 0px; vertical-align: baseline;"><em style="border: 0px; margin: 0px; padding: 0px; vertical-align: baseline;">I went without eating or drinking a full 18 hours so I could get this procedure done.</em></strong></p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">In the cath lab, I am well taken care of, listened to, and they always remember me. They treat me like the valid human being I am. They take the time to even warm up my blankets before giving them to me. And when I come out of surgery, they make sure I have delicious food to drink and either a Sprite or Coke with ice to go with my sandwich.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">In the ER Thursday, I had an almost 4 hour long wait, was even triaged promptly, and when I finally got a room, room 6, everyone was super friendly and I was treated very well, that is, up until the last, after my procedure was done and I came back from my surgery. And they saw that my friend had left for a break.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">The nurses I had this ER visit were Melissa, who was consistently sweet, and Makayla and her trainee, Caitlyn. There was also a tall young man, also sweet, and my ER Doctor was Dr. Harmon.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">When my friend who I asked to accompany me, left to take a break after my cath surgery, your nurses, both Caitlyn and Makayla, got downright rude….refusing to answer my call button—and on my end I saw NO evidence they were looking for food and something I could drink after surgery. Not even a warm blanket.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">They wanted me to stay another long two hours without food or drink to get antibiotics via IV—yet no one seemed concerned that I was suffering from acute thirst and hunger and that me, a Type-2 pre-diabetic, was experiencing low blood sugar.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">They were very unconcerned about my comfort and well-being.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I kept pressing my call button because I really needed to eat and drink something. And I got ignored……and then after a long wait while they literally sat outside my door giggling and gossiping—they would finally come in.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">But still no move to secure me even a damn cup of water.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">My experience in the OR that afternoon went great, and the surgical team all even remembered me and had my alternative rock playing.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">But afterwards? Makayla and Caitlyn treated me like I was a mere sack of potatoes.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">Also, when I got out of surgery, Melissa was nowhere to be found, even though I kept requesting her.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">Both me and my friend kept reminding them I had gone without ZERO anything to eat or drink since the night before.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">But I was still beyond hungry and parched from thirst.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I am Autistic, which is a Disability that also comes with accommodations under the Americans With Disabilities Act due to sensory issues, triggers, plus CPTSD, and it cannot be treated with behaviorism, fixed and scolded away.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I made it very clear to every staff member I encountered there of this fact. I always do this for my self-protection. They all seemed to get it, and me. Until my friend took a small break.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">The sudden ignoring, giggling at me and giving me dirty looks from right outside of my door., taking their time to answer my call button, their sudden snottiness and snippiness and ableistic remarks…..caused me to become afraid to stay in that room any longer.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">When I was starting to become upset due to not eating and acute thirst, and suddenly being treated as Less-Than I was dismissed and told cruelly…Makayla’s exact words:</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">“I think you need to spend some time thinking really hard about growing up, really, you should try it. It’ll make life better for you, otherwise, you are going to just fail in life.”</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">Judging others when you don’t know them is all levels of wrong and unacceptable. Maybe I’m not the one who needs to grow up.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">It was at this point, I was like “Fine! I’m done!” I asked to have them call my friend back in. I requested to sign an AMA so I could just get the hecky damn outta there.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I only got a bit over an hour of my two hour antibiotic regimen.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">Caitlyn then proceeded to throw the barest minimum of discharge papers at me, plus my AMA, without a clipboard, I had to ask for a clipboard—all I got was just my post-op instructions, with no paper record of who my doctors were on this visit, and what meds I was given—like I always get when in the cath lab.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">Makayla then went onto told my friend when she came back that she did go all over the hospital to try to find me a good ham sandwich, like the ones I got at my last cath lab visit that were so delicious—- because I cannot handle turkey—yet, I saw no evidence or indication that this was being done.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I am afraid to ever use your ER again. Next time, I will have my cell phone with me.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">Thank you for the added trauma. you have added to my already traumatized life.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">You need to once and for all fix your still pathetic ER. Or take “Humankindness” out of your name and motto.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">Y’all can see my full review on Marian’s Yelp page, as I tried to re-edit the one I wrote to MMRC’s Facebook page, and FB glitched on me and wouldn’t let me re-do it at all.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">The above post was hidden, however MRMC did comment, so here is my response to their comment:</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I need to know why my post was hidden from your page, please.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">In addition, I definitely plan to follow up on this because my ER experience gone *no good horribly bad*, only added to a 62 years long lifetime of real C-PTSD trauma for me that I am unfortunately still processing. Today.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I had to do the AMA because I was frightened to stay any longer after your nurses began being rude and neglectful. This caused me to not receive hour two of my two hour antibiotic regimen that was prescribed me post-surgery.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I have responded to your Messenger message. In addition, I did complete and submit my survey on my phone where it was considerably harder for me to write out the comments I wanted to write. So I kept referring to my Yelp post, as I found this above post to be hidden from your page.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">The removal of my valid post silences my valid complaint as a human being who was gravely wronged by staff of your public medical facility. I was not even allowed to post this in a review on your page, so I had no choice but to to post this in your Community tab.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I am an Autistic / Disability Activist Writer / Blogger, so I do happen to write about ALL matters related to our rights and dignity as human beings who just want the same equal freedoms / accessibilities in life just like non-disabled folks enjoy.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">That’s not a huge ask.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">So many of us with hidden disabilities are treated this way, Othered, gaslit, and treated as Less Than, and by my speaking out, I am helping not just myself, but my fellow Disabled friends in the Autistic /Disability Community here on Facebook, Twitter, Instagram, etc.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">You CAN fix this, Marian. It needs to be fixed.</p>Melissahttp://www.blogger.com/profile/17458872329425009616noreply@blogger.com0tag:blogger.com,1999:blog-8942863686705986301.post-451838209493538132021-09-22T23:50:00.001-07:002021-09-22T23:50:21.367-07:00Full Documentation Of My Past 10 Months At Dialysis<p> <span style="background-color: white; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px;">#MedicalAbleism #MedicalAbuse #Gaslighting</span></p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">Folks, medical ableism is very real, and this is what I have been having to endure at dialysis for over a year now…..and my clinic still won’t actually address this nurse who is still continuing to make my life a literal living waking hell.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I know this is a long read. But please read this and share this widely. People need to know what it is like to continually to be treated like I am a bad behavior when my autism is a disability, and how utterly isolating this is—to need dialysis to stay alive in a clinic that is not at all built for accessibility for autistic people.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;"><a href="https://www.facebook.com/hashtag/medicalableism?__eep__=6&__cft__[0]=AZX5qiFsMMmX7G2YRWU9HZzk3n_S7NSvVgnDNe7EQfNUMBJ6qpihB3twl2m15i8wksxc6YnM0eHwGeEFEWcUNSjNYpoUIm_yIBMp2mvLXPoej4hQu-4oVnmh95ty3ZOk7m7Q0RkCXosMKySId4ps4cWUopbYn61V_ofGRbn9OwOXFw&__tn__=*NK-R" style="border: 0px; color: #21759b; margin: 0px; outline: none; padding: 0px; vertical-align: baseline;">#MedicalAbleism</a><a href="https://www.facebook.com/hashtag/unseenunheard?__eep__=6&__cft__[0]=AZX5qiFsMMmX7G2YRWU9HZzk3n_S7NSvVgnDNe7EQfNUMBJ6qpihB3twl2m15i8wksxc6YnM0eHwGeEFEWcUNSjNYpoUIm_yIBMp2mvLXPoej4hQu-4oVnmh95ty3ZOk7m7Q0RkCXosMKySId4ps4cWUopbYn61V_ofGRbn9OwOXFw&__tn__=*NK-R" style="border: 0px; color: #21759b; margin: 0px; outline: none; padding: 0px; vertical-align: baseline;">#UnseenUnheard</a></p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">When, even after I have bent over backwards to educate my dialysis nurse about my autism and neurodivergence, my dialysis nurse still:</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">*One Saturday in December of 2020, repeatedly slammed shut the ISO room door on me when I kept melting down because she kept yelling at me and scolding me, and saying I needed tough love and ABA for my “disruptive behaviors”, then months later when this is again brought up, tells me: “Oh, but I didn’t slam your door! I wasn’t the one who slammed your door! It was the tech who did! You’re remembering things wrong!”</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">That is what gaslighting is, folks. And gaslighting is abuse.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">*On that same Saturday, what started my Saturday afternoon long meltdowns, was when she was prepping me to get me put on the machine, I asked her if she had read my list of autistic resources, she said to me: “Oh, well, okay, I did read ‘some’ of it, but I’m not going to follow much of it, because I also saw these ‘other’ videos that tell me I am to treat you with tough love, and not give in to your ‘behavior’.”</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">When I tried to tell her why ABA is not the way to treat ANY autistic person, she replied with: “I am a professionally, medically- trained nurse, so I am going to go with what is ‘evidence-based’.”</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">THAT, exactly, was why I was having so many meltdowns that Saturday! The Saturday that started all of my problems with Nurse W! It threw me into a panic because she wanted to treat me with literal ABA therapy! Because she went right to the pro-ABA videos. That I had asked her not to watch. And believed those over actually autistic people who have BEEN through ABA therapy HELL.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">This was how my family treated me when I was growing up, and none of them knew I was autistic, just that I had childhood schizophrenia, and a “perceptual handicap”….the terminology of the ’60’s.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I was treated this way all through school. By most police officers. Because yes, I have had to deal with alot of police. I was also treated this way by most people who tried to befriend me. And by a long string of abusive caregivers when my physical health began going downhill.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">And it traumatized me, over and over again, and gave me lifelong deep-seated trust and abandonment issues, lifelong self esteem issues and lifelong Complex PTSD—on top of my autism.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">*On that same Saturday in December of 2020, also yells at me because a kind tech turned the horrible bright lights off for me because they were literally hurting my eyes, and she, the nurse comes in and angrily snaps them right back on, yelling at me for having them turned off.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">(I get that it is state law to have a VERY well-lit dialysis clinic,, but why keep yelling at me and scolding me like I’m a little child being punished, because the damn bright LED lights are literally HURTING MY EYES????)</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">*Calls me paranoid and says it is all in my head when I tell her<br />my heparin is not running in the machine<br />or I am having weird heart palpitations,<br />or my machine has been set to take off much more fluid than I KNOW my body can handle at one time.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">*Every single fear, question and concern I have as a patient is dismissed as me just imagining things, it’s all in my head, I’m being paranoid, or “I’m the nurse, I know what I’m doing, so be quiet”—and my questions and concerns go unanswered.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">*Turns the machine monitor away from me suddenly, when she knows that is also a trigger, to not be able to see my machine’s monitor, then yells at me like I’m an unwanted dog to “get out of here, go to the bathroom now!” in a scary mean yell voice, when I protest about my machine monitor being moved so I can no longer see what is going on.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">*Won’t let me write what I want to write on my Against Medical Advice form and gets angry about it telling me:</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">“Okay, you need to stop! Oh…that’s it! I no longer trust you. Our whole friendship is going to be much different now. You’re not going to get any of the perks and goodies I’ve been giving you anymore, things are going to be much different now, you have lost all of my trust in you!”</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">That is a literal threat, folks.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">When Nurse W presented me with the AMA to sign she had written “refusal to let closing nurse do her take-off” on it, so I crossed that out, and went to write a less accusatory and judgmental version.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">That pissed Nurse W off, and she began saying the horrible things she said to me above.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">*Still orders me in a loud strict yelling voice that she knows upsets me: “Put your mask on!” when I genuinely forget to put it on.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">*Keeps labeling me as a refusal this, a refusal that, and then throws in non-compliant and high maintenance when I have asked her NUMEROUS TIMES to stop labeling me those things!</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I am autistic,<br />I am wired differently</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">and this whole dialysis clinic is a daily sensory NIGHTMARE for me to have to sit in for four hours a day 3 times a week.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">*Tells me, with glee, like she is threatening me with punishment, that she is a mandated reporter and has to report what I have just told her, to the authorities, when I tell her I feel like I want to die, instead of talking TO me COMPASSIONALTELY to find out why I am feeling like I want to die—or getting the social worker so I can talk to them about why I reach the point of such overwhelm that I want to die—and I am left feeling totally unheard and invalidated yet again by my nurse.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">*When one day I say out of my desperation I wish I would just crash on the machine today, and she uses this to threaten me that she cannot dialyze me when I tell her things like that—-instead of talking TO me and finding out why I feel this way.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">*Repeatedly calls me paranoid, repeatedly tells me I am imagining things, repeatedly orders me around in a stern voice like I am still in grade school—and does this—over and over and over again till I just want to scream.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">*On yet another Saturday, Saturday 9/11, she threatens to call the police when I am having a meltdown for being punished yet again by her, when I am just trying to show her how to wrap the ends of my catheter because she is doing it literally all crooked like she knows how I hate it done.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">*On that same Saturday, tells the nice tech to not ask my permission anymore to take my temp, when it has been written in my plan that all of them are to ask before they just do things to my body. Using my boundaries, my right to my bodily autonomy, and my very sensory needs as weapons to punish me when I am “acting out”—her words.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">That, also is emotional blackmail, and is all levels of abuse.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">On Saturday 9/11, she and I were both on edge. I came in already upset. Because my house had a million nats in it that morning.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">What made her take me off of my machine a whole hour early that day? It was not that I was scaring one of her new patients with my meltdown——it was actually because I made the statement out of sheer frustration at being barked at by her to “Put your mask up!”—instead of her asking me gently——when she came into see why I was melting down in the first place. Which was because I could not get my backpack off of its tray table. My backpack was stuck. I could not get it off the tray table.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I made the statement: “I am done.” That was her MAIN cause to yank me off of my machine and totally disregard my sensory boundaries and face.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">She keeps on treating me like I am a bad behavior instead of an autistic 61 year old struggling to cope with a clinic that is NOT AT ALL set UP for autistic folks.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">It is literally as if she looks for reasons to yell at me, scold me, and shorten my treatments.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">For four whole months—from December 2020 to April 2021—she would put me on late, and then I would have to leave early, often 1 to 2 hours early, because she would sit at her computer and wait until 1:30 to put me on.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">She as well as two other techs all huddle together, and it is like they look for ways to antagonize me into a meltdown, just so that they can then punish me. And then laugh and gloat about it.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">This happens mostly on Saturdays when management and social workers are not there, but has also happened on Tuesdays and Thursdays as well.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">So. After reading all of this….please try to put yourself in my shoes.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">Would these things not make you feel like you can no longer trust this woman, this nurse, to take care of your dialysis treatments?</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">Would these things not make you terrified to have this nurse take care of you anymore? Especially since you are away from everyone else in the isolation room so you can still do your vocal stims that help keep you calm enough to get through 4 hours of being literally tied to a dialysis machine, and, because you are in the ISO room, you don’t have to have your mask on when people aren’t in the room with you?</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I would have put my mask up, but please, for the love of God, ask me nicely.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">She can be nice…very, very nice and sweet, but then these trainwrecks happen and actually ruins all of the nice times with her.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">But, tell me, please…..Would this not make you feel like you do not matter as a human being to this nurse???<br />Would this not make you terrified to ever be alone in the room ever again with this nurse???<br />Would this not make you feel vulnerable???<br />Would this not make you cringe when you now have to even hear this nurse’s voice????</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">Does all of this not go against the patients’ rights, of which your clinic gave me a copy of when I first signed up for dialysis treatments at this clinic?</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I am Autistic.<br />I was born Autistic.<br />It IS a whole different way of being,<br />processing,<br />and experiencing life<br />for those of us who are Autistic.<br />And we will be Autistic till the day we die. You cannot yell, scold, fix, problem solve and cure our autism.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">When you yell, it literally is like we are DYING. Your yelling tells us we are wrong and broken. Shameful. And Less Than.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">Autism is a disability. A disability that is protected under the ADA.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">Ask yourself again, would YOU want this nurse to continue to work on you if YOU were autistic, and she kept treating you like you were a fucking criminal instead of the Autistic adult human being you are????</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">She may be a new nurse.<br />She may be human.<br />She may have a problem with anxiety when under stress.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">But guess what? So am I….<br />Still a new patient<br />I am human.<br />I have a problem with anxiety when I am under stress.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I don’t like having meltdowns. I know it frightens the other patients. I try my best to handle having to be strapped to a machine in those uncomfortable chairs for 4 hours.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I try my best to always be considerate and kind to everyone there.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I bend over backwards to meet you all halfway there at this clinic.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">Because I DO care.<br />I DO have compassion.<br />And great empathy for others besides just me.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I GET it that that one Saturday was 9/11. The 20th anniversary of a horrific event that I also saw happen before my eyes on live TV. Many of you lost loved ones and friends on that awful day.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">God, I GET that so hard!!!!!!!!!!</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">But that was still no reason for Nurse W to yell at me, and scold me, and then yank me away from my lifesaving dialysis—-just for me saying “I am done.”???? Her words, again.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">Tell me why, please, should there be any valid reason to repeatedly keep punishing me for what I cannot help as an autistic who has to undergo this dialysis just to live. In a building that is not set up for autistic people?</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">Why does this give nurses like W the right to continue to treat me like I’m a bad criminal, instead of an autistic adult who is more often than not, in a consistent state of sensory overwhelm when I have to go there to do my lifesaving dialysis.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">Especially after I have educated this nurse over and over and over and over and OVER again???</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">Tell me. Please. I am waiting and I am listening.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">A post script: They have, temporarily given me the head nurses as my nurses, and Nurse W was gone last week, but yesterday she was back on, even though she didn’t take care of me, one of the head nurses did—-even so, I still had to se and hear Nurse w’s voice, and it killed me to be in that room still having to see and hear her.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I am still waiting in suspense as to how this is going to be handled.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">And another post script:</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I am done with my piece of crap dialysis center.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">They are moving me to Mondays Wednesdays and Fridays in the mornings beginning the week of Oct. 6th. Exact time to still be worked out, but hopefully a 9:30 AM arrival time, and a 9:45 AM put on time…this way I still have my afternoons to get all of my appointments, errands, grocery shopping, banking, showers, etc., done.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I will still be in the ISO room. But with a different nurse, and different techs. Meaning I have to be up earlier, there earlier, nd no more of me having to be there on Saturdays in the ISO room with Nurse Whitney…at Nurse W’s mercy.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">It appears nothing is being done to address Nurse W’s abusive treatment of me.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">I have warned them that if Nurse W can treat me the way she did, she will do this to the person who goes in the ISO room in my place.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; overflow-wrap: break-word; padding: 0px; vertical-align: baseline;">Nurse W seems to love being the boss of me, well, now she got her damn way.</p>Melissahttp://www.blogger.com/profile/17458872329425009616noreply@blogger.com0tag:blogger.com,1999:blog-8942863686705986301.post-8905783033031261372021-09-13T16:09:00.004-07:002021-09-13T16:09:48.715-07:00My Autistic Dialysis Hell, Part Two, And A Monday Afternoon Update<p> <span style="background-color: white; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px;">Saturday morning started with me battling multiple nats in my living room and kitchen. And my bathroom too. The nats have been all over for days now.I was already on sensory edge about the nats flying all over my house yesterday.</span></p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I went to dialysis on edge.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I had meltdowns at dialysis because I had yet another different tech in my pod. And my nurse Whitney was also on edge. When Nurse Whitney is in a bad mood or stressed out, I always pay. Because I have multiple vocal stims, I do my dialysis in the isolation room, and Nurse Whitney feels she can get away with mistreating me because she feels no one will hear. Because I am in the ISO room.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">When I am already high anxiety, it has a rippling effect.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">At dialysis my lines were unruly, and had to be adjusted alot. I finally had them lay them across my lower abdomen, because to keep them clamped to my left shoulder, made the white line cap for lab draws cut into my shoulder, and it was painful.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Nurse Whitney was impatient with me about having to readjust my lines so I could be comfortable in my dialysis chair.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Dialysis was me having alot more meltdowns.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I have begged them to assign another nurse to my side of Side B, one who would have patience and understanding and who would work with me and really listen to, see, and hear me.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Instead, I am stuck having to work with a nurse who lets me know consistently that she has problems with me because of all of my ISMS. I have been having problems with Nurse Whitney since December 2020.Towards the end of my treatment, with one hour and five minutes to go of treatment, I went to get my backpack from the tray table on the left side of my chair so I could call my caregiver to discuss my dinner meal plans, and the strap stuck on the side of the tray table. Before I had a chance to think to just press my call button for help, I began yelling in my frustration, plus profanity along with my yelling.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">When having meltdowns, I cannot control what comes out of my mouth.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Please. Read that again.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">What ensued, instead of Nurse Whitney coming to help me with my bag, was Nurse Whitney becoming impatient and yanking me off of my dialysis machine ONE FULL HOUR before my finish time. As a result, I got 2 hours and 59 minutes exactly of my prescribed four hour treatment, and when I fought to be kept on the machine, and she kept touching me without my permission, HER response was to threaten to call the police on me. Just like I was a criminal.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">She kept putting her hands and arms close to my face as well, which she is WELL AWARE is a huge sensory trigger. Yesterday, she didn’t care. She even told the kind tech who came and asked me if she could take my temperature, to not bother to ask my permission for that, that she didn’t have to ask my permission, to just go ahead and do it…take my temp.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">For the love of God, neurrotypicals, I need you to understand and GET that we as autistics are wired totally different than you. Our sensory needs are important for you to accommodate, because if you don’t, we are triggered into literal painful agony. Our sensory systems are wired much differently than yours are.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I have bent over backwards to try and educate you all, both through Facebook, and at my dialysis clinic for the past 3 years I have been going there to get dialysis, and still some do not get it that autism is a disability because of sensory needs not being taken seriously.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I need to get my story out there, friends. This is already ruining my weekend, because, and listen, really listen to when I say this, one does not just get over being manhandled and then threatened with the police who can escalate things even more to the point where we run the risk of being injured or even killed by the officers who come to supposedly diffuse my meltdown.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Calling police on us when we are IN DISTRESS, is the last thing one should ever do. There are ways to de-escalate meltdowns that do not and should never involve restraint, scolding, seclusion, any kind of threat or punishment.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I feel so utterly alone today. Like this is only going to get worse, until someone takes seriously that my nurse is abusive, and she needs to actually be fired.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">In addition, she forgot to give me my hepogen and hectoral, and my heparin lock for both the veinous and arterial sides of my catheter at the end, and when I went to the bathroom during my treatment, failed to put the machine in bypass mode.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">This is not the first time I have caught Nurse Whitney making mistakes with my care. I once caught her setting my machine to pull a full two kilos of fluid, knowing full well this would land me half dead in the hospital. One reason why I request to always have my machine facing me is, so I can watch everything, to make sure it is all correct.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">My story of yesterday is all up and down my Timeline. It is all set to public and is very shareable.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I am asking all of you to please share this and put my story in your blogs if you have a blog. <a href="https://www.facebook.com/hashtag/medicalableism?__eep__=6&__cft__[0]=AZVWmsWWU2p3fZUZr2-2-wX4es6TgzoQf_5hBfDg_Hj6tiDoJIasfcsCHDqHRYJ0BAojm8ORMHs2taGHxcVuxgiel4J7LPe__MOvFxeRcvDnJFzh3bKdGa59eMUfxXpYqho&__tn__=*NK-R" style="border: 0px; color: #21759b; margin: 0px; outline: none; padding: 0px; vertical-align: baseline;">#MedicalAbleism</a> is real, and it is happening to me, just trying to stay alive because some do happen to love and care about me…..my mom, my two sisters, Connie, Natalie, and my Facebook autistic disabled community friends.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Below is a post I made to an advocacy org that apparently is no longer in service…..so here it is, here:</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">” I am a 61 year old autistic adult who has been on in center hemo dialysis since June 2018, and a DaVita patient since July 5, 2018.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Although I have spent the past 3 years breaking my back to educate all staff and nurses there, plus the facility admins, I have been having serious issues for the past two years of my 3 years there, mainly due to impatient insensitive nurses, including the one that has been assigned to my pod for the past year.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">For the past year, they have had me assigned to a nurse who for 11 of these months beginning in December 2020, she will sometimes be very curt with me, forget my sensory needs, and cause me to have meltdowns.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">She has threatened to withhold nice treatment, her “friendship”, and in Dec., she made it her mission to keep shutting my door on me so that no one could hear my machine if it alarmed. If I have concerns or questions, it is met with “I am your nurse, I know what I’m doing!” and “You just don’t concern yourself” and gaslighting “I did put the machine in bypass mode” or “I did do that, didn’t you see?”</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">My story is on my Facebook. My local ESRD has been of precious little help.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">You can contact me via my email. I would give you my contact phone number, but do not know if that is allowed via email.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Thank you, and I fervently hope you will help me. “</p><hr class="wp-block-separator" style="background-color: #cccccc; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; height: 1px; margin: 24px auto 1.71429rem; opacity: 0.4; width: 100px;" /><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I probably won’t be alive by Halloween of this year, if my kidney center has its way in shoving me out the door. I may be dead within weeks. I don’t trust corporate healthcare. Or my kidney center.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I Have A Right To Exist<br />And Be Seen And Heard<br />As My Full On Autistic Self<br />And I Have A Right<br />To<br />My Lifesaving<br />Kidney Dialysis<br />All Four Hours of It.<br />Stop Taking That Away From Me<br />For Meltdowns<br />That Are Being Caused<br />By<br />Your<br />DELIBERATE<br />Inability And Refusal<br />To See, Hear, Embrace,<br />And Respect Me<br />As I Am.~~~Melissa Fields</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">And an update from today, Monday, September 13, 2021:</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Update on my dialysis center / nurse issues:</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I have a 12 PM noon meeting between me, my caregiver Connie, my kidney center social worker, the kidney center facility admin, and my nephrologist, tomorrow before dialysis.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I pinned my social worker down when I talked to her just now as to if they are planning to involuntarily discharge me?</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Thankfully the answer on that score, is NO.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Social worker says they are doing this meeting so we can all as a team, come up with a plan so that both staff and I can feel safe during my time there getting treatment., moving forward.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I was also adamant that I can no longer work with Nurse Whitney. I’ve worked with Nurse W for a year now, and still my issues with her keep happening because she basically does not care.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Whitney and a few others seem to believe fully in the adage that “When the cat’s away, the mice will play.”</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Stay tuned, everyone.</p>Melissahttp://www.blogger.com/profile/17458872329425009616noreply@blogger.com0tag:blogger.com,1999:blog-8942863686705986301.post-47677977620203906752021-09-13T16:06:00.003-07:002021-09-13T16:06:28.600-07:00My Dialysis Hell Continues<p> <span style="background-color: white; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px;">I had several meltdowns today at dialysis.</span></p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">My lines that transport my blood to and from the machine were unruly, and kept bothering me. I had to have them routed differently.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Nurse Whitney, the nurse who is still assigned to me, lost her cool, saying that this was putting her behind to accommodate me on where to have my lines placed.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">With one hour and 5 minutes left to go on my treatment, I tried to get my backpack off the chair’s tray table so I could message my caregiver to see what we were going to do for dinner tonight.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">The long strap caught on the tray table, and so meltdown #2 happened. A lady, a patient on my side began to yell at me repeatedly to shut up.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">It only escalated my meltdown to where I was yelling, cussing, and saying “I am done!” over and over.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Nurse Whitney marched in and proceeded to terminate my treatment against my will, stating that I was a safety risk.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I was unable to calm down. Next thing I know, Whitney warned me that she would have to call the cops if I did not stop, that my “temperament” was causing the entire staff and patients to feel unsafe.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I had no choice but to leave, and have my caregiver pick me up earlier than normal. I only got 2 hours and 59 minutes of my prescribed 4 hour treatment today as a result of what I know In my heart of hearts could have been handled much differently, by Nurse WHITNEY.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I keep having these kinds of problems with Whitney….yet they keep assigning her as my nurse….even though she keeps dressing my catheter all crooked, and with crinkles and creases, and gaps in the dressing, and she, along with Tech named BELEN, are always the ones that causes my meltdowns there. It IS intentional.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I have been having problem after problem like this since August 2019 with impatient ableistic nurses and techs who keep moving my machine, touching me too near my face, and ordering me like I’m an unwanted animal.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I am unable to adapt to that hellhole anymore than I am able to. I literally cannot take having to go there another day.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">This is where I am at tonight.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I need a miracle or I am going to BREAK INTO A MILLION LITERAL PIECES.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I need my community’s help, friends.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">In addition, I wrote a review of my kidney center on Yelp. Here it is below, copied and pasted.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">—-</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I wish I could give this place a zero, but the option was 1, so here it is.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I’m an autistic adult, yes, hello, there are hundreds of thousands (Actually, more than a million) of us autistic neurodivergent folks out there, and the past two of my three years of me having to get a vital lifesaving treatment that I am entitled to so I can stay alive for those who love me, at this center, have been sheer sensory hell….with only a small bit of accommodation for my sensory needs because they keep forcing me to deal with techs and a nurse who all have very little tolerance and patience for the challenges I experience as an autistic person.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I love my social worker, as well as many of the staff there. However, even though I have spent my 3 years educating them, some of the staff and the current nurse who is assigned to me, keep treating me as if the meltdowns—that some of them cause—is a behavior that I can control.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">They do not get it—and don’t want to get it—that they continue to keep doing what I have told them thousands of times triggers me and then when I meltdown, I am yelled at, scolded, then thrown off of my machine early before the end of my 4 hour prescribed time, sent home, and today, my nurse even threatened to call the police on me, when I fought to finish my treatment.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">After yet another meltdown that she and another staff member caused.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Today, I was upset, first about my lines being too uncomfortable for me, and then again because when I went to get my backpack to get my phone out to make a phone call, the large strap on it caught on the side table of my chair, and in frustration, I yelled. Because I yelled, I got sent home one full hour early. By threat and force.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Certain protocols have already been put in place at this center to mitigate my sensory hell, even so, my nurse still seems to enjoy causing me to get upset, so she can “make an example” out of me.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I hope Fresenius is reading this, because Santa Maria needs more kidney center choice, and I also hope Davita headquarters is also reading this, because this is cruel treatment of a person who has bent over backwards to educate them on my triggers, meltdowns, and how to handle me when I am in distress. So this kind of incident does not happen.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">As per the Americans With Disabilities Act.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">In closing, Autism is not a disease or behavior. It is a neurotype, and a disability. Me and the hundreds of thousand other autistic need for the medical community to finally GET this and stop treating us like we are animals and like the human beings we are.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">#MedicalAbleism is real. Google it.</p>Melissahttp://www.blogger.com/profile/17458872329425009616noreply@blogger.com0tag:blogger.com,1999:blog-8942863686705986301.post-3911399494863639282021-08-14T07:36:00.000-07:002021-08-14T07:36:34.238-07:00A Something—A Huge Something That Needs To Be Said<p> <span style="background-color: white; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px;">Putting this here, because, well, Facebook’s new platform now has this super uber angry-making and frustrating to NO end habit of eating posts we write if they are long posts.</span></p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I need to say a huge something. A HUGE something. Because you all need to know this.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">And yeah, this does keep me awake at night. Lots of nights, not just because of my own situation, but the situation of many of my friends, and all who are marginalized.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Our economy is sadly designed so that those who are upper middle class, wealthy and filthy rich have it easy peasy, and can afford everything that comes their way, including staple expenses we all pay for such as groceries, medicines, vitamins, utilities, internet, healthcare, etc., but the rest of us, who are middle class, low income, poor, disabled, elderly, etc., are now being literally gouged—-each and every single month. Gouged to where many are homeless or incarcerated. Gouged to where many turn to self medication, drugs, and crime to cope and survive.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Our cruel pull-yourself-up-by-your-bootstraps Capitalist system is designed to literally leave out those who are Black, Brown, Indigenous, Disabled, Elderly, LGBTQIA+, Immigrant, and etc. Add Americanized Trumpified Evangelical Christianity to this mix, and yeah….it makes for a toxic systemic living hell that literally leaves huge groups of us behind. Woefully and literally behind.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">The lower income you are, the harder it gets just to stay afloat each month. Many of us turn to credit cards to pay for some of our monthly expenses because what we get in income each month is not enough to actually cover all of our monthly expenses.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">And with the pandemic, prices at the grocery stores and drugstores have risen sharply. Prices all around have risen sharply. The wealthy and rich can afford these higher prices no problem, but the rest of us…this is eating us alive. It’s eating ME alive.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">If you are disabled and cannot work—like me—your Social Security and/or SSI is your only source of income.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Many of us also do not have a supportive family. I do have my mom and two of my sisters, plus my two caregivers who help me all they can, but they too are struggling. And the rest of my family ignore me. They. Totally. Ignore. Me. And see me as a bad person because of my Autism, my meltdowns and my struggles.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Each month I have had to rely on my credit cards to augment what I get from Social Security. They pay for my skin creams that I need, my vitamins that I take to still maintain a semblance of (somewhat) healthy, plus books, and recreational outings and stuff I also need just for my sanity, because let’s face it, we ALL need to have outlets to stem the day to day mundane in our lives—and we need those things whether we are rich or poor, sorry, but that’s the truth. Human beings thrive if we have lives that can be actually fun too. Not just us existing.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">And to add to my mix, I now have end stage stage five kidney disease, and have been on dialysis fort three years now. I am also Autistic, by the way, and have lifelong Complex-PTSD trauma from just how most have misunderstood my Autism and have treated me as lazy and just a walking bad behavior instead of a person with a different and disabling neurotype, because of all of my sensory triggers I have had my whole life. Because of all of my stims. Because I am still utterly FASCINATED by things like shiny hair. I STILL love seeing how the light plays in shiny hair, and I still call them AQUA SHINES. Just like I did in fifth grade.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">It has ben an achingly LONELY LIFE of me having very few friends and allies because of all who misunderstand and villainize Autistic people as broken and in need of fixing and curing. We Autistics are not monsters. Get to know us and you will see that. Get to sincerely KNOW us and I promise you, you will see that.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Contrary to popular belief, not all or even a lot of poor, elderly disabled and homeless people are trynna game the system.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Most of our homeless and poor are those who have fallen through the cracks due to a woefully inadequate and antiquated mental health care system,<br />a woefully inadequate and antiquated physical healthcare system,<br />a woefully inadequate and antiquated judicial system that seeks to punish rather than heal people,<br />systemic racism, homophobia, transphobia, xenophobia, sexism, anti-Semitism, anti-Muslim hate, and every other kind of hatred and bigotry….<br />and an immigration system that also discriminates and punishes rather than seeks positive outcomes for those who are, in the vast majority of cases, fleeing their homelands to escape the poverty, hunger, and violence they are sadly encountering in the places they used to call their home, but isn’t anymore.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">And our neglected inner cities and impoverished rural areas.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">It is maybe 1% who are “just lazy and who ‘game’—abuse—the system.” Read that again. Most people are sincerely struggling—and more and more of us are struggling beyond what we can bear now.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">When one has to work 2 to 3 or even 4 jobs just to pay rent, that ain’t okay.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">When even our social safety net is designed to keep us trapped in fear and poverty, a never-ending cycle of fear and poverty, that is not okay.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Yes, Joe Biden, along with Bernie Sanders, AOC, and many other progressives in Congress are trying to re-do and expand Social Security, Medicare, and Medicaid—and it is about freaking time. They are also trying to make these programs less hard for us to get, and less hard to be able to keep our benefits.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">But so much more needs to be done to eradicate the poverty and suffering of marginalized folks. It can only be done if minds and hearts are opened, and we ALL rethink our outdated, antiquated, negative, bigoted, and racist ideas.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">And let us start by dismantling those systems that got us all here in the first place—really and truly dismantling those oppressive harmful systems. Every. Single. One. Of. Those. Systems. And building a whole new system that prioritizes the full equality and dignity of humankind and our earth over corporations and rich people.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Thanks for listening.</p>Melissahttp://www.blogger.com/profile/17458872329425009616noreply@blogger.com0tag:blogger.com,1999:blog-8942863686705986301.post-1366906332110200062021-06-20T21:49:00.002-07:002021-06-20T21:49:27.524-07:00An Update On Dialysis<p> <span style="background-color: white; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px;">I am happy to report that due to my diligence with the ERD Network 18, I am once again back to four hour treatments, am able to finish my treatments now, and they are working on educating the techs and nurses and facility admin on putting us patients first always, and accommodating our disabilities.</span></p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">This has been a hard road, but things are improving.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I have been able to finish all dialysis treatments since the beginning of May.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I will keep y’all posted.</p>Melissahttp://www.blogger.com/profile/17458872329425009616noreply@blogger.com0tag:blogger.com,1999:blog-8942863686705986301.post-10519112605129533912021-06-20T21:47:00.004-07:002021-06-20T21:47:53.650-07:00When You Do Blue Lives Matter, Or All Lives Matter, It Is A Slap In The Face To Black People <p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXBCAVFt7mcXbRrZkTOu8qoEW4ftSlBcBIdwSOMZEEWKjbHWY1v1oZlsuQuQ5-ZnDcxpfPPAaHW9H2jYyTc5cvpy2-VHuM8_o4dBwEuiUoj2CLw6MWHkEICR2RZt1PBkewk83tsVy6_Bk/" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="670" data-original-width="720" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXBCAVFt7mcXbRrZkTOu8qoEW4ftSlBcBIdwSOMZEEWKjbHWY1v1oZlsuQuQ5-ZnDcxpfPPAaHW9H2jYyTc5cvpy2-VHuM8_o4dBwEuiUoj2CLw6MWHkEICR2RZt1PBkewk83tsVy6_Bk/" width="258" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div><p></p><figure class="wp-block-image size-large" style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; margin: 0px 0px 1em; padding: 0px; vertical-align: baseline;"><figcaption style="border: 0px; color: #757575; font-size: 0.857143rem; font-style: italic; line-height: 2; margin: 0.5em 0px 1em; padding: 0.75em 0px 0px; vertical-align: baseline;">Image by Roy Smith Jr. Two flags, one American, and the other is the black and white blue lives matter flag. Text reads: This is the American flag. This is a gang symbol. Section 176 Respect For Flag, The flag should never have placed upon it, nor on any part of it, nor attached to it, any mark, insignia, word, figure, design, picture or drawing of any nature, including discoloration.</figcaption></figure><div class="separator" style="clear: both; text-align: center;"><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; text-align: start; vertical-align: baseline;">Hello everyone. Plus, it is illegal AF.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; text-align: start; vertical-align: baseline;">Okay. Yeah. I am sharing this because Ima tell you a little story about the flag on the right in this above picture.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; text-align: start; vertical-align: baseline;">Just imagine if you will, that you are Black, you are the surviving family member of a Black person whose life ended needlessly because a sadistic racist police officer decided he was going to shove them into the ground and shove their knee into their neck with the deliberate intent to kill them, just for a routine traffic stop. While his partners watched, and said nothing. <a href="https://www.facebook.com/hashtag/georgefloyd?__eep__=6&__cft__[0]=AZWETkoE3wAgTiaaa3aRHWmsUOn_gqAaBonw-cly8ywckVCPfglDwSE5EkFYhH8Z0zIHpEuWxQI7aEMe-fE151R6hzKwJakM1lAwg6uK7bz2EYthyuuMTM5hZ8vqBpY9WyX7aTCWeubKJQe2Hr7Jvuo3pbY9upTS9_AjJDXsOTDo8g&__tn__=*NK-R" style="border: 0px; color: #21759b; margin: 0px; outline: none; padding: 0px; vertical-align: baseline;">#GeorgeFloyd</a></p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; text-align: start; vertical-align: baseline;">Or you are the surviving member of the family of <a href="https://www.facebook.com/hashtag/breonnataylor?__eep__=6&__cft__[0]=AZWETkoE3wAgTiaaa3aRHWmsUOn_gqAaBonw-cly8ywckVCPfglDwSE5EkFYhH8Z0zIHpEuWxQI7aEMe-fE151R6hzKwJakM1lAwg6uK7bz2EYthyuuMTM5hZ8vqBpY9WyX7aTCWeubKJQe2Hr7Jvuo3pbY9upTS9_AjJDXsOTDo8g&__tn__=*NK-R" style="border: 0px; color: #21759b; margin: 0px; outline: none; padding: 0px; vertical-align: baseline;">#BreonnaTaylor</a>, whose home was broken into by bloodthirsty racist police, in a No Knock warrant, only guess what? They got the wrong house, but because Black people lived there, Breonna Taylor got shot and killed anyway.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; text-align: start; vertical-align: baseline;">Instead of those police officers involved being brought to justice, they get acquitted. Then still allowed to be police officers. Instead of heartfelt condolences, people flew this ugly black and white flag with the blue stripe, and said Blue Lives Matter, All Lives Matter, and oh, Colin Kaepernick hates America because he kneeled.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; text-align: start; vertical-align: baseline;">Would you not feel like you have just been slapped cold and hard, and repeatedly, in the face?</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; text-align: start; vertical-align: baseline;">Sure, all lives matter, but it is Black people who have been given the absolute lowest of the lowest rung of the ladder by y-t people. For 400-plus fucking years.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; text-align: start; vertical-align: baseline;">This is why this flag represents even more in the way of hate and dismissiveness of Black people’s pain and hurt. This is why we have the <a href="https://www.facebook.com/hashtag/blacklivesmatter?__eep__=6&__cft__[0]=AZWETkoE3wAgTiaaa3aRHWmsUOn_gqAaBonw-cly8ywckVCPfglDwSE5EkFYhH8Z0zIHpEuWxQI7aEMe-fE151R6hzKwJakM1lAwg6uK7bz2EYthyuuMTM5hZ8vqBpY9WyX7aTCWeubKJQe2Hr7Jvuo3pbY9upTS9_AjJDXsOTDo8g&__tn__=*NK-R" style="border: 0px; color: #21759b; margin: 0px; outline: none; padding: 0px; vertical-align: baseline;">#BlackLivesMatter</a> movement now<br /><br />I hope this really hits you in the core of your heart today.</p></div><p><br /></p>Melissahttp://www.blogger.com/profile/17458872329425009616noreply@blogger.com0tag:blogger.com,1999:blog-8942863686705986301.post-80072378462561863802021-03-25T20:49:00.000-07:002021-03-25T20:49:02.063-07:00Dialysis, Part Two<p> <span style="background-color: white; color: #050505; font-family: inherit; font-size: 15px; white-space: pre-wrap;">I started writing a post about today's dialysis, and, well, FB decided to eat it again.</span></p><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;">Today's dialysis went okay, but it was mentally and emotionally draining for me. For me to have to see Mo there again when he frightened me by the way he yelled at me on Tuesday----only today, to see that he was now all smiles and laughs, going all around saying nice warm friendly "Hi's" to all of the other patients, and even pulling up a stool to talk to them ALL in a very caring, warm, and friendly manner, but, me, he totally ignored me--- I think that is what has me upset the most tonight. Because he totally ignored ME. And talked to everyone else.</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;">My nurse Whitney tells me that the facility admin did talk to him and address what happened on Tuesday, and my nurse Whitney also plans to follow up and talk to Mo the next time she sees him, since he will be there helping out for the next four months. So he and I can work together without anymore trainwrecks.</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;">But this is what upsets me, and when I am upset it doesn't matter what has upset me, it still goes over and over and over in my mind until I am a literal mess wanting to just roll under my house and die: Is that he totally ignored me and did not make any move to come in to make amends for putting me in a sate of emotional hell on Tuesday. But he made it a special point to warmly greet everyone else, and to sit or stand and talk to them warmly.</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;">I was so afraid to go to dialysis today because of Mo. Because I knew he would be there again. So this morning when I awoke I called the ESRD (End Stage Renal Disease) Network 18 line to let them know what happened Tuesday. I had to leave a detailed voice mail and I did. I told them everything, and how shitty it made me feel all over again, just like my father all over again and his rage-filled harsh, punitive disapproval of me as a person.</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;">My ESRD Network 18 caseworker, E, called me back during the second hour of my treatment. She and another dialysis nurse, Jewel, who really impressed me, by the way, **viola!** happens to know a great deal about the issues we autistic adults face with ableism, gaslighting and abuse, who is also against ABA therapy, knew exactly what I was describing, my feelings of feeling isolated from everyone else by Mo, and Othered by how I continue to be treated with insensitivity by the Facility director and some of the other staff members.</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;">She knew just how to make me feel heard and seen, and when she told me how frightening it has to feel for me to have to go there just so I can stay alive, and continually try to educate the staff and still these problems keep happening,, how isolating and yes, terrifying this must feel----I broke down crying----because my normal social worker also saw and heard me just like this too.</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;">The feeling I get when people really get why I am the way I am, and can articulate it back to me, makes me feel even more empowered to speak up for myself, and that I am okay after all. </div><div dir="auto" style="font-family: inherit;"><span style="font-family: inherit;">
Do people not realize, once and for all, that just treating those of us who are autistic with patience, kindness, and letting us speak and voice what is hurting us, and letting us be who we are in whatever space we are in, is the way to help and be a friend and ally to us, and that it is not helping us when you instead, judge us and make us feel wrong in what we feel, and you yell at us and scold us and treat us like we are merely just "bad behaviors" that are to be fixed and cured? God, it really is that simple, but yet, people just still can't, or won't, because to them, just because Autism Speaks and the media says so, we are burdens to be shoved off in the corner, and dismissed as nothings.</span></div><div dir="auto" style="font-family: inherit;"><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">The team at ESRD Net 18 are in my corner, and that gives me hope again. They tell me that how the facility director is treating and handling my issues is NOT okay, and are going to help get her, and the staff to finally treat me like the human being I am. So I can start looking forward to going to my dialysis treatments again.</div></div></div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;"><br /></div></div>Melissahttp://www.blogger.com/profile/17458872329425009616noreply@blogger.com0tag:blogger.com,1999:blog-8942863686705986301.post-1665119073004360392021-03-24T04:37:00.005-07:002021-03-24T04:37:54.942-07:00My Autistic Dialysis Hell<p> <span style="background-color: white; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px;">For years ever since my March 2012 final falling out with my then next door neighbor who was supposed to be a friend and ally to me, G, I have avoided having to go places—anywhere—by myself—ever again. Talking on the phone has gotten even harder for me to do.</span></p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">The falling out I had with G threw a traumatic switch in my entire body making it so I could no longer handle getting behind the wheel of a car and driving it. To this day, I have not driven again. I still don’t feel comfortable driving.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Losing the friendship of G devastated me to my very core because I wanted with my entire being to believe he was the older brother figure I never had growing up.. He would be so supportive and compassionate, but then every other month, he would get in these pissy ableistic mean moods with me where he didn’t want to bother with me. My mother would have to call him sometimes several phone calls, to get him to be nice to me again.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">After that final ugly falling out, I sold my tiny white two door Toyota Tercel, because I was too frightened to drive or go places by myself anymore.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">This was the year my lymphedema leg lump grew even bigger, and I began having to have personal caregivers come into my home to take care of me. First, I got caregivers from two agencies my mom paid for, then it was IHSS caregivers.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">My health—my body was shutting down even further. Because of G, and the then problems I was having with bullies who used to work in an auto shop across the street who tormented me, and just because I still was not free to be able to pursue any of the lifelong goals I have had for my life since I was a child. I still haven’t gotten to achieve my lifelong goals.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Because that falling out, coupled with the then problems I was having with the nearby auto shop bullies, literally was like losing the love all over again that I thought I had with my father when I was a small child and I stopped being cute in his eyes, and started being a major annoyance to him because I was so damned fucking different than all of my other brothers and sisters.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Losing G’s love and support, and by the way, he has never told me why, he just turned on me and began doing the very things he knew would trigger me, such as the loud man banshee yells he knew I hated from the bullies across the street in the auto shop. G too turned into one of those bullies. Losing his support, crushed me.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Having caregivers come into my home also added to my trauma because well, most NT’s cannot or don’t want to get autistic people and the different way we think, process, and experience and handle life. I went through literal holy hell with one abusive caregiver after another until I finally found Connie in March 2014.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">My C-PTSD Trauma Me almost ran Connie off too. But Connie kept coming back to me. She has, so far, refused to give up on me. Like most people have.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">In 2018, again in March, she left me once again, this time, not because we were having problems, but to take a job that had really super great pay and benefits, so she could take advantage of the health benefits that that job offered.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I went through several more abusive caregivers while she was gone, this time, abuse that got so bad that I tried to run away from my own home. Abuse that got so bad that my caregiver left me without breakfast, and a way for me to get to dialysis, so Connie had to quit that job and come back as my caregiver.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">2018 was also the year my kidneys failed. And I began needing dialysis to stay alive.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">At first, my dialysis clinic was on top of any and every problem that arose with non-understanding techs and nurses who didn’t get how to approach and deal with my sensory issues. The then facility director, along with my awesome dialysis clinic social worker, took real care to make sure these issues all got resolved for both the techs and me to be able to work better together. Everyone there had my back.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">In August of 2019, that nice facility director got married and left, and her replacement was a woman who from the get-go was totally different. She was harsh and unbending….and soon, my problems escalated because she has never dealt with any of my issues that have come up, well.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">With each problem that has arisen since her takeover, instead of her understanding and GETTING it that my meltdown responses are an actual medical response, which is a real something I cannot help when I am triggered, she has made it her mission to become my personal ABA therapist at dialysis. She focuses squarely on the yelling, screaming and cussing that results from my meltdowns—-instead of the very real state of mental PAIN and ANGUISH that I have just been thrown into. And keeps forcing me to work with techs and nurses who provoke these meltdowns.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Yesterday, a traveling tech from LA named Mo, a very handsome young male presenting person, was there helping them out, and he was on my side of the building floor. He wasn’t my tech, but was in the pod East of my pod, working.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I kept watching him with fear because he reminded me of a young 20-ish version of my father. I had the strong feeling that if he were to have to come into my room, he would not be friendly. Still, I hoped that I was wrong, that he would be nice to me if I did meet him.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">In fact, when I made my vocal stim noises, singing to the tones of the acoustics in my room, he kept looking right at my room and shaking his head, rolling his eyes.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I honestly hoped he would not have to come into my room at all. I didn’t like the vibe I was getting from him at all. I knew he was going to be unfriendly.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">And I was spot-on.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Approximately 1 hour and 54 minutes into my treatment, I pulled the call button because of an issue I was having with another tech, and because my tech was on her break, it was Mo who came striding from his pod, into my room.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">RUH-ROH!!</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">There was NO friendly hello at ALL, and he had a stern, angry annoyed and disapproving look on his face as he looked right at me and then RIGHT down at the large basketball-sized lymphedema lump that is on the inner thigh of my left leg.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">One of the somethings that really trigger me into a meltdown–is to not be acknowledged and greeted–one other trigger is to have someone look at me with disgust because of my lymphedema and body size, yes I am very fat, oh well, get over it—-and I have lymphedema too, so get over that too, buttercup—he just walked straight past me to the call button to turn it off—without saying hi to me.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Already, my head was spinning.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">He didn’t ay hi.<br />He didn’t say hi.<br />He didn’t say hi.<br />HE DIDN’T SAY HI TO ME!!!!!!!!!<br />HE-DIDN’T-SAY-HI-TO-ME!!!!!!!!!!!!</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I had said hello to him as he walked into my room, then past me to get the call button turned off..<br />He said nothing back.<br />I said hello to him again.<br />Still nothing.<br /><br />I n fact, Mr. Mo seemed indeed very angry to have to be near me. Because I make strange noises, and sing to the room acoustics.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I’m a godsdammed human being with feelings.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">{{{{{{I said hello to this man twice.}}}}}<br />{{{{{{He refused to respond.}}}}}}</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">The dam broke.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">My response was to finally yell at him in frustration:</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">“Aren’t you going to say HI to me???”</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Because hey, I am here, talk to me. It really hurts to be<br />Deliberately. Deliberately. Ignored. Hello!</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Especially by a young Hollywood type man like Mo who in every way reminded me of a young 20-somehing version of my father.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I do well to go there and try my best to meet everyone, both patients and staff, all halfway. Because I do have compassion and I care about others.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">But this arrogant rude AF young man was intent, hell-bent on coming into my room and being deliberately rude to me, just because he didn’t like how I looked, sitting in my chair with my leg lump on full display, the bulge right there for him to see underneath my pant leg.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">He was not there to help me like I needed. He was there to just be a rude toxic masculine asshole. Who hated me because I made strange singing noises, and he hated me because of how my body looks. I have learned to see the signs of a medical professional’s disapproval whenever I have to go to any medical appointment. They focus on how I look, and my yelling and distress at having to be there, and call it a behavior and non-compliance. Instead of the real raw fear I am feeling of wanting to just run the fuck OUT of there back to the safety of my home.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Body shaming and disability shaming are what goes on in all medical establishments because medical professionals are taught in their medical schools that being fat and disabled are wrong and bad, so they don’t think twice about treating us like literal garbage.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Until now they had my back at my dialysis clinic, but now they do not, and these problems keep happening. And the problems are getting worse. As usual, their now facility director came in focused—not on my pain—but the full on loud meltdown I was having. Yes, I used profanity again, but during a meltdown, it is next to impossible to not yell, to not scream, and to not use cuss words.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">This young man from LA, instead of saying “I’m sorry, hello, I’m Mo, what is your name?” Lost his fucking temper and went off on me. Complete with his finger wagging in my face.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">“How DARE you talk to ME like that, YOUNG LADY! WHO do YOU think you ARE that YOU can speak to ME like that?” as he pointed right to my disfigured legs.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I exploded and told him to get out, I didn’t need help, and to fuck off. Then could not stop screaming.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">In came Ms. Facility Director. Again focused on my yelling, saying she could hear me clear from where her office is. Focused on how loud I was being, not the state of sheer mental AGONY that her newest young arrogant precious asshole Mo had just put me in.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">And they were going to even take me off of the machine early, but I told them adamantly NO! I was going to get whatever dialysis treatment I could get, and they relented and let me stay till my 5:30 get off time. I ended up only getting 3 hours and 18 minutes of my prescribed 4 hours and fifteen minutes of treatment I was supposed to get.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Because I still had to use the bathroom. And they never get me put on at my on time start time, which is at 1:15 PM, Tuesdays, Thursdays, nd Saturdays. I got put on yesterday at 1:40 PM.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">My nice social worker who does have my back, has once again been gone on medical leave since the second week of January. She is now not expected back until the middle of April. So I have no social worker to go to and to talk to again.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">When people are rude like Mo was, it sends me into a state of utter anguish and personal hell where I flash back to all of the times I was belittled and yelled down and punished and rejected by my father and brothers for just being ME.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I have never done well in environments where the people expect me to act and be the Apple Pie Normal I am naturally hardwired NOT to be. They expect me to rush at THEIR pace. To march to THEIR beat. To just shut up and let them go right ahead and get right up in my face and touch me when I did not ask to be touched. And talk to me however the fuck they see fit, even if it crushes my soul to the ground yet again.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Because oh, it’s just Melissa, she can handle it, because well, Melissa doesn’t matter. Melissa doesn’t have feelings. Melissa doesn’t cry.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Well, guess what? Melissa does cry. She breaks everytime someone comes along and treats her like she is yesterday’s dirty trash.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Because Apple Pie Normal was what was expected of me, and drilled into me growing up in my family. Every fucking single painful day of my life. By my loud yelling screaming domineering father, and my brothers, and sisters. I was expected to never make waves. To never speak up for myself. It was ingrained into me at a young age that what I felt and thought never mattered. I was to just go with the flow or get spanked and beaten and screamed at, then go off in my bedroom away from all of them, a sobbing crushed heartbroken mess.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Be seen, not heard.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Seen, not heard.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Over and over again.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Seen, not heard.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Yesterday’s encounter with Mr. Mo was the last straw. I will be following up with the End Stage Renal advocacy team later on today when I am up for my day.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">I will never have another man get up in my face and yell at me like Mo did yesterday, ever again. If they do, it’s war. Because I took it all of my life growing up. I refuse to let them rob from me what little self esteem and self love I have grown to have for myself at the age of almost 61 years.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">It’s called toxic masculinity. And I am not here for it anymore.</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">In the meantime, I spend another night wondering why I even have to continue to go to a place that is just upsetting me even more to be there, than it is helping me being able to just fucking stay alive because my kidneys have both shut down now?</p><p style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin: 0px 0px 1.71429rem; padding: 0px; vertical-align: baseline;">Autism is a disability. Disabled people are human beings. It is time medical professionals be held accountable for how we are treated. Including you, Mr. Mo from LA! Stop judging us. Stop the body shaming. Start listening to us, believing us, and seeing us as the human beings we are.</p>Melissahttp://www.blogger.com/profile/17458872329425009616noreply@blogger.com0tag:blogger.com,1999:blog-8942863686705986301.post-86805838567444360342021-02-06T05:28:00.011-08:002021-02-06T05:46:40.403-08:00MY STORY ONCE AND FOR ALL~~AND WHY I NEED HELP TO SURVIVE THE REST OF WHATEVER YEARS I HAVE LEFT TO LIVE ON THIS EARTH<p><span style="background-color: white; color: #050505; font-family: inherit; font-size: 15px; white-space: pre-wrap;"><br /></span></p><p><br /></p><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;">The thing is
I was born.
I exist.</div><div dir="auto" style="font-family: inherit;">I breathe. I live.</div><div dir="auto" style="font-family: inherit;">I matter</div><div dir="auto" style="font-family: inherit;">As I am.</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;">But, ya see, here's the thing,</div><div dir="auto" style="font-family: inherit;">I was born disabled</div><div dir="auto" style="font-family: inherit;">In May of 1960 </div><div dir="auto" style="font-family: inherit;">in a time when no one </div><div dir="auto" style="font-family: inherit;">knew what they know now about being disabled.</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;">Back then, being disabled was thought of as both abhorrent, </div><div dir="auto" style="font-family: inherit;">and we who were disabled, were to be pitied, scorned, </div><div dir="auto" style="font-family: inherit;">and put into the back rooms of our houses, </div><div dir="auto" style="font-family: inherit;">or put into institutions.</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;">Growing up, I never knew I'd grow up to go onto Facebook</div><div dir="auto" style="font-family: inherit;">And find out that there was a movement</div><div dir="auto" style="font-family: inherit;">A disability rights movement</div><div dir="auto" style="font-family: inherit;">And a neurodivergent movement</div><div dir="auto" style="font-family: inherit;">that says being disabled and autistic</div><div dir="auto" style="font-family: inherit;">is OKAY</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;">Yes, I was born Autistic</div><div dir="auto" style="font-family: inherit;">With co-occurring learning disabilities</div><div dir="auto" style="font-family: inherit;">And cognitive disabilities</div><div dir="auto" style="font-family: inherit;">And what I always was told </div><div dir="auto" style="font-family: inherit;">were emotional disabilities</div><div dir="auto" style="font-family: inherit;">and a perceptual disability</div><div dir="auto" style="font-family: inherit;">On top of that, </div><div dir="auto" style="font-family: inherit;">I was born with crossed eyes (strabismus)</div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;"><div dir="auto">I had eye surgery</div><div dir="auto">at the age of 2 1/2 years</div><div dir="auto">to correct this</div><div dir="auto">but still was left with my right eye as my </div><div dir="auto">"lazy eye"</div><div dir="auto"><br /></div><div dir="auto"><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">I still remember that surgery</div><div dir="auto" style="font-family: inherit;">and how I was pinned down afterwards</div><div dir="auto" style="font-family: inherit;">on my hospital bed</div><div dir="auto" style="font-family: inherit;">blind, unable to see </div><div dir="auto" style="font-family: inherit;">due to patches being put on both of my eyes</div><div dir="auto" style="font-family: inherit;">That early childhood experience was my first </div><div dir="auto" style="font-family: inherit;">in a lifelong time of trauma</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">Trauma after trauma after trauma</div><div dir="auto" style="font-family: inherit;">Because my family, and then schoolkids, </div><div dir="auto" style="font-family: inherit;">could not understand </div><div dir="auto" style="font-family: inherit;">why I was both giddy silly over lights, </div><div dir="auto" style="font-family: inherit;">and certain things</div><div dir="auto" style="font-family: inherit;">and why I was frightened of so many, many things </div><div dir="auto" style="font-family: inherit;">that none</div><div dir="auto" style="font-family: inherit;">of my other siblings were frightened of</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">I was terrified of bright lights</div><div dir="auto" style="font-family: inherit;">flickering flourescent lights</div><div dir="auto" style="font-family: inherit;">Cats and dogs</div><div dir="auto" style="font-family: inherit;">Swimming in a swimming pool</div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;"><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">I was too scared, terrified, to learn how to ride a two wheel bike</div><div dir="auto" style="font-family: inherit;">I was too scared, terrified, to learn to roller skate</div><div dir="auto" style="font-family: inherit;">Or to play ball because</div><div dir="auto" style="font-family: inherit;">Instead of catching the ball, I would get hit by the ball</div><div dir="auto" style="font-family: inherit;">I was even scared, terrified, of the loud static-y record player we had</div><div dir="auto" style="font-family: inherit;">And our loud radio</div><div dir="auto" style="font-family: inherit;">And it all hurt</div><div dir="auto" style="font-family: inherit;">Because all of this was all literally scary to me</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">Instead of understanding me, </div><div dir="auto" style="font-family: inherit;">I got ridiculed by my siblings</div><div dir="auto" style="font-family: inherit;">They would use these fears of mine to control me</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">Growing up, I never knew</div><div dir="auto" style="font-family: inherit;">exactly what was "wrong" with me</div><div dir="auto" style="font-family: inherit;">I just knew that I was different</div><div dir="auto" style="font-family: inherit;">And because I was different, I was Less-Than</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">I knew that I </div><div dir="auto" style="font-family: inherit;">was not at all </div><div dir="auto" style="font-family: inherit;">the normal as apple pie</div><div dir="auto" style="font-family: inherit;">that [I was always told]</div><div dir="auto" style="font-family: inherit;">that all of my brothers and sisters were</div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;"><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">I went to special ed classes from grades 1 through 4</div><div dir="auto" style="font-family: inherit;">then was put right into a rural school with no special ed classes</div><div dir="auto" style="font-family: inherit;">in 5th grade</div><div dir="auto" style="font-family: inherit;">when we moved to the mountains east of Santa Maria</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">I was not accepted at school or at home</div><div dir="auto" style="font-family: inherit;">Both places I was teased harshly and ridiculed</div><div dir="auto" style="font-family: inherit;">Or patronized and treated like a little baby</div><div dir="auto" style="font-family: inherit;">To be pitied</div><div dir="auto" style="font-family: inherit;">But still Less-Than</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">The stress of never being enough</div><div dir="auto" style="font-family: inherit;">Got to me physically</div><div dir="auto" style="font-family: inherit;">And I developed facial hair</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">Yesterday, my mom told me that I never had to work</div><div dir="auto" style="font-family: inherit;">But the reality was that</div><div dir="auto" style="font-family: inherit;">I was never able to work </div><div dir="auto" style="font-family: inherit;">Because of my facial hair</div><div dir="auto" style="font-family: inherit;">And the disabilities I had</div><div dir="auto" style="font-family: inherit;">And the way I was treated as Less Than</div><div dir="auto" style="font-family: inherit;">And the way it all manifested inside and out</div><div dir="auto" style="font-family: inherit;">In my body and brain</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">And high school</div><div dir="auto" style="font-family: inherit;">Was even harder</div><div dir="auto" style="font-family: inherit;">I kept running away in my sophomore year of HS</div><div dir="auto" style="font-family: inherit;">to get away</div><div dir="auto" style="font-family: inherit;">from my STILL mean hot tempered father</div><div dir="auto" style="font-family: inherit;">and all of my mean siblings</div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;"><div dir="auto">I desperately wanted to go </div><div dir="auto">where I would find acceptance</div><div dir="auto">and belonging</div><div dir="auto">I did find that in a family who moved near us</div><div dir="auto">in the mountains</div><div dir="auto">so I was always at their house</div><div dir="auto">because they made me feel like a person
<span style="color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 17.5px; white-space: normal;">I was ridiculed also because I knew by the time I was in 7th grade</span><br style="color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 17.5px; white-space: normal;" /><span style="color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 17.5px; white-space: normal;">That I was sexually different</span><br style="color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 17.5px; white-space: normal;" /><span style="color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 17.5px; white-space: normal;">as well from all of my peers</span><br style="color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 17.5px; white-space: normal;" /><span style="color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 17.5px; white-space: normal;">I just didn’t understand then</span><br style="color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 17.5px; white-space: normal;" /><span style="color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 17.5px; white-space: normal;">what it meant to be</span><br style="color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 17.5px; white-space: normal;" /><span style="color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 17.5px; white-space: normal;">Non-BInary, Queer, and Bi-Sexual</span><br style="color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 17.5px; white-space: normal;" /><span style="color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 17.5px; white-space: normal;">Because back then, in the 60’s and 70’s, it was</span><br style="color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 17.5px; white-space: normal;" /><span style="color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 17.5px; white-space: normal;">still highly frowned upon to be</span><br style="color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 17.5px; white-space: normal;" /><span style="color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 17.5px; white-space: normal;">homosexual / transgender / non-binary / genderfluid.</span><br style="color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 17.5px; white-space: normal;" /><span style="color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 17.5px; white-space: normal;">And I never had anyone I could discuss that with</span><br style="color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 17.5px; white-space: normal;" /><span style="color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 17.5px; white-space: normal;">Again, because being LGBTQ in those days</span><br style="color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 17.5px; white-space: normal;" /><span style="color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 17.5px; white-space: normal;">Was still a No-No.</span>
</div><div dir="auto"><br /></div><div dir="auto"><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">But at home, it was hell, always hell</div><div dir="auto" style="font-family: inherit;">Because I either had to act silly, or just clam up into a shell </div><div dir="auto" style="font-family: inherit;">In order to survive the harsh narrow mindedness of my family </div><div dir="auto" style="font-family: inherit;">And my father was always scolding</div><div dir="auto" style="font-family: inherit;">always yelling in a rage at me</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">I was beaten by him as a child</div><div dir="auto" style="font-family: inherit;">and punished for things like looking at my shiny hair </div><div dir="auto" style="font-family: inherit;">and swigging my arms</div><div dir="auto" style="font-family: inherit;">and using slang</div><div dir="auto" style="font-family: inherit;">and listening to rock music</div><div dir="auto" style="font-family: inherit;">and for being too silly</div><div dir="auto" style="font-family: inherit;">I was punished for my quirks</div><div dir="auto" style="font-family: inherit;">Always shoved away, punished, and scolded</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">Then later on in my early 20's</div><div dir="auto" style="font-family: inherit;">I got diagnosed with paranoid schizophrenia</div><div dir="auto" style="font-family: inherit;">by an SSI appeals psychiatrist</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">I went on SSI (Supplemental Security Income) when I was 21, because of my facial hair, and </div><div dir="auto" style="font-family: inherit;">then what was thought to be mental disabilities.</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">I knew I wasn't paranoid schizophrenic</div><div dir="auto" style="font-family: inherit;">Because I didn't have those symptoms</div><div dir="auto" style="font-family: inherit;">But it was what they labeled me with at that time.</div><div dir="auto" style="font-family: inherit;">No one thought to say</div><div dir="auto" style="font-family: inherit;">"Aha, she's autistic!"</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">And my family never understood me or supported me</div><div dir="auto" style="font-family: inherit;">Instead, I spent my growing up years sheltered and shielded</div><div dir="auto" style="font-family: inherit;">from life</div><div dir="auto" style="font-family: inherit;">from being able to think for myself</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">I basically never got the opportunity to work </div><div dir="auto" style="font-family: inherit;">and to be able to get off of the government benefits </div><div dir="auto" style="font-family: inherit;">I have now been living on since the age of 21.</div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;"><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">I grew up never getting to party, or have real teenage fun.</div><div dir="auto" style="font-family: inherit;">I have still never even gotten to attend a rock concert.</div><div dir="auto" style="font-family: inherit;">I was alone and had very few friends in high school.</div><div dir="auto" style="font-family: inherit;">A huge group of jocks made fun of me my entire time </div><div dir="auto" style="font-family: inherit;">in high school.</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">I lived at home with my parents</div><div dir="auto" style="font-family: inherit;">Until December 1987</div><div dir="auto" style="font-family: inherit;">when my parents </div><div dir="auto" style="font-family: inherit;">were finally able to afford to</div><div dir="auto" style="font-family: inherit;">pay to rent a small studio apartment</div><div dir="auto" style="font-family: inherit;">for me here in town</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">I began to thrive there at my first apartment</div><div dir="auto" style="font-family: inherit;">Because I had learned very well </div><div dir="auto" style="font-family: inherit;">how to mask my autistic traits</div><div dir="auto" style="font-family: inherit;">I was accepted by my family then</div><div dir="auto" style="font-family: inherit;">but even so, none of them ever came to visit me</div><div dir="auto" style="font-family: inherit;">when I lived there,</div><div dir="auto" style="font-family: inherit;">except for my mom and grandma</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">I even tried to get help through CA Voc Rehab </div><div dir="auto" style="font-family: inherit;">so I could work</div><div dir="auto" style="font-family: inherit;">But like everything else, that too failed </div><div dir="auto" style="font-family: inherit;">due to the little real support I had from my family.</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">Then my father had a stroke in July of 1989</div><div dir="auto" style="font-family: inherit;">And in 1991, I had to move to one of my sister's cottages</div><div dir="auto" style="font-family: inherit;">where I again got thrown into </div><div dir="auto" style="font-family: inherit;">being taunted and terrorized so badly </div><div dir="auto" style="font-family: inherit;">by two grown college aged girls next door to me</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">Then more neighbors in nearby auto shops </div><div dir="auto" style="font-family: inherit;">and other businesses ganged up </div><div dir="auto" style="font-family: inherit;">And began to bully and torment me also.</div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;"><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">And it began affecting both </div><div dir="auto" style="font-family: inherit;">my mental and physical health to where today</div><div dir="auto" style="font-family: inherit;">I now have lymphedema on both of my legs</div><div dir="auto" style="font-family: inherit;">A lymphedema leg lump the size of a basketball</div><div dir="auto" style="font-family: inherit;">on my left inner thigh</div><div dir="auto" style="font-family: inherit;">and now I am in end stage</div><div dir="auto" style="font-family: inherit;">stage five kidney disease</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">My family has abandoned me.</div><div dir="auto" style="font-family: inherit;">My eldest sister moved to Arizona in 2001 with her husband.</div><div dir="auto" style="font-family: inherit;">My other sister moved to Idaho in 1991 with her husband and family </div><div dir="auto" style="font-family: inherit;">followed my my youngest brother, in 1995 and his family, </div><div dir="auto" style="font-family: inherit;">then my parents in 1996</div><div dir="auto" style="font-family: inherit;">then my eldest brother and his wife and girl moved there in 2004.</div><div dir="auto" style="font-family: inherit;">With the exception of my mother and two of my sisters</div><div dir="auto" style="font-family: inherit;">who do care</div><div dir="auto" style="font-family: inherit;">all others in my family ignore me</div><div dir="auto" style="font-family: inherit;">I am essentially just...a bother to them</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">They still don't get it that I was born into that family</div><div dir="auto" style="font-family: inherit;">that I exist</div><div dir="auto" style="font-family: inherit;">and that I need help.</div><div dir="auto" style="font-family: inherit;">because I was never able to pull myself up in life</div><div dir="auto" style="font-family: inherit;">like they could do.</div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;"><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">I am. I </div><div dir="auto" style="font-family: inherit;">exist.</div><div dir="auto" style="font-family: inherit;">I can think.</div><div dir="auto" style="font-family: inherit;">I can make my own informed decisions.</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">I'm a fucking human being.</div><div dir="auto" style="font-family: inherit;">I have rights.</div><div dir="auto" style="font-family: inherit;">I have the right to make choices.</div><div dir="auto" style="font-family: inherit;">I have a right to know what is happening </div><div dir="auto" style="font-family: inherit;">before ppl just go and do things </div><div dir="auto" style="font-family: inherit;">that are going to affect my very life </div><div dir="auto" style="font-family: inherit;">without asking me first.</div><div dir="auto" style="font-family: inherit;">I have the right </div><div dir="auto" style="font-family: inherit;">As a disabled adult</div><div dir="auto" style="font-family: inherit;">To live and to thrive </div><div dir="auto" style="font-family: inherit;">As I am</div><div dir="auto" style="font-family: inherit;">In my own community</div><div dir="auto" style="font-family: inherit;">To have full accessibility</div><div dir="auto" style="font-family: inherit;">To have full freedom.</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">I am still disabled.</div><div dir="auto" style="font-family: inherit;">I am 60 years old now.</div><div dir="auto" style="font-family: inherit;">I'm STILL a full-on PERSON, though!</div><div dir="auto" style="font-family: inherit;">Today, I am the ONLY one in my family </div><div dir="auto" style="font-family: inherit;">who does not have their own home.</div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;"><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">They all have jobs and homes.</div><div dir="auto" style="font-family: inherit;">I just have one of the two cottages where I live.</div><div dir="auto" style="font-family: inherit;">That are owned by my mother and a trust</div><div dir="auto" style="font-family: inherit;">Well, I need a safety net too when my mom passes away,</div><div dir="auto" style="font-family: inherit;">And she cannot see that.</div><div dir="auto" style="font-family: inherit;">And neither can the rest of my family </div><div dir="auto" style="font-family: inherit;">who already totally ignore me</div><div dir="auto" style="font-family: inherit;">and just think of me as a BOTHER.</div><div dir="auto" style="font-family: inherit;">A fucking BOTHER.</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">I'm not in a good place today mentally.</div><div dir="auto" style="font-family: inherit;">Because I was told when my mom passes away, that these two cottages are going to be sold....</div><div dir="auto" style="font-family: inherit;">And the proceeds from this sale will be used </div><div dir="auto" style="font-family: inherit;">to be shared amongst my five living siblings.</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">Where does this leave me? </div><div dir="auto" style="font-family: inherit;">With only my Social Security to have to learn to survive on</div><div dir="auto" style="font-family: inherit;">Because until yesterday</div><div dir="auto" style="font-family: inherit;">I was under the assumption</div><div dir="auto" style="font-family: inherit;">I would inherit these two cottages </div><div dir="auto" style="font-family: inherit;">as my safety net for my future.</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">I will end up either homeless</div><div dir="auto" style="font-family: inherit;">Or forced into a nursing home.</div><div dir="auto" style="font-family: inherit;">Which my mother keeps telling me that is where I belong</div><div dir="auto" style="font-family: inherit;">In a nursing home</div><div dir="auto" style="font-family: inherit;">where I won't be free at all.</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">This is why I play the Powerball lottery, so I CAN be free.</div><div dir="auto" style="font-family: inherit;">It is</div><div dir="auto" style="font-family: inherit;">for me</div><div dir="auto" style="font-family: inherit;">the ONLY way out I see for myself</div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;"><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">Winning the Powerball jackpot</div><div dir="auto" style="font-family: inherit;">Will Free me</div><div dir="auto" style="font-family: inherit;">of the fear that those in my family </div><div dir="auto" style="font-family: inherit;">who think of me as a bother, </div><div dir="auto" style="font-family: inherit;">will sell the two cottages where I live</div><div dir="auto" style="font-family: inherit;">and I will be forced into a nursing home </div><div dir="auto" style="font-family: inherit;">when my mom dies.</div><div dir="auto" style="font-family: inherit;">Free of the more grave poverty </div><div dir="auto" style="font-family: inherit;">I will be in also when she dies.</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">This is why I am for universal healthcare.</div><div dir="auto" style="font-family: inherit;">This is why I am for </div><div dir="auto" style="font-family: inherit;">the freedom to live and work in our communities </div><div dir="auto" style="font-family: inherit;">that the Olmstead Law has given us disabled people</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">And I am also for a basic universal monthly income</div><div dir="auto" style="font-family: inherit;">in the amount of $2,000 a month, </div><div dir="auto" style="font-family: inherit;">so that I can still live a decent life after my mom is gone.</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">But I have learned </div><div dir="auto" style="font-family: inherit;">the painful, hard, heartbreaking way</div><div dir="auto" style="font-family: inherit;">That even my own mother can forget</div><div dir="auto" style="font-family: inherit;">just what my life has been like and be cruel</div><div dir="auto" style="font-family: inherit;">and take the only safety net I have away from me</div><div dir="auto" style="font-family: inherit;">That we cannot count on our biological families </div><div dir="auto" style="font-family: inherit;">to have our backs</div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;"><div dir="auto">They were the ones who told me time and again</div><div dir="auto">As I was growing up, </div><div dir="auto">as I was a developing human being</div><div dir="auto">My family all told me</div><div dir="auto">Over and over </div><div dir="auto">and OVER again</div><div dir="auto">That I was never enough</div><div dir="auto">That would never date</div><div dir="auto">That I would never have boyfriends</div><div dir="auto">Never have friends</div><div dir="auto">Never have a car</div><div dir="auto">Never kiss</div><div dir="auto">Never have sex</div><div dir="auto">Never have a job</div><div dir="auto">Never drive</div><div dir="auto">Never learn to think for myself</div><div dir="auto">They told me time and again</div><div dir="auto">I was Less-Than</div><div dir="auto">Broken</div><div dir="auto">Wrong</div><div dir="auto">Too weird</div><div dir="auto">Too ODD</div><div dir="auto">Too crazy</div><div dir="auto">That I would never succeed at life</div><div dir="auto">And yeah....they called me the R word</div><div dir="auto">Called me a dog</div><div dir="auto">Said I didn't have brains in my head</div><div dir="auto">That no one would ever like me</div><div dir="auto">That I'd be spending my life running running running</div><div dir="auto">Till I'd run out of places to run to.</div><div dir="auto"><br /></div><div dir="auto"><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">The above that I am describing </div><div dir="auto" style="font-family: inherit;">Is sadly, the treatment that so many, </div><div dir="auto" style="font-family: inherit;">far too many children </div><div dir="auto" style="font-family: inherit;">who happen to be born Autistic</div><div dir="auto" style="font-family: inherit;">get from their families</div><div dir="auto" style="font-family: inherit;">My family is no exception.</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">Yes, the two angels in my life,</div><div dir="auto" style="font-family: inherit;">my two sweet caregivers did talk to my mom</div><div dir="auto" style="font-family: inherit;">yesterday afternoon</div><div dir="auto" style="font-family: inherit;">and get her to listen and understand</div><div dir="auto" style="font-family: inherit;">and she said she would talk to my brother and sister</div><div dir="auto" style="font-family: inherit;">and tell them my plight</div><div dir="auto" style="font-family: inherit;">and that she would go and change her will</div><div dir="auto" style="font-family: inherit;">to make sure I am taken care of</div><div dir="auto" style="font-family: inherit;">when she passes away</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">that I will have life tenancy in my home till I die.</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word;"><div dir="auto" style="font-family: inherit;">But I am still terrified </div><div dir="auto" style="font-family: inherit;">of what my brothers and sisters may still do to me</div><div dir="auto" style="font-family: inherit;">when my mom passes away.</div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;"><div dir="auto">I hope to God </div><div dir="auto">That if my eldest brother </div><div dir="auto">who is now in Heaven</div><div dir="auto">Because he passed away in May of 2018</div><div dir="auto">That he sees, from Above,</div><div dir="auto">what my family may be trying to do to me today</div><div dir="auto">And he watches over me and prays</div><div dir="auto">for me like I know he does</div><div dir="auto">And prays that</div><div dir="auto">God </div><div dir="auto">will soften their hearts to finally know,</div><div dir="auto">Get,</div><div dir="auto">And understand my plight.</div><div dir="auto">Otherwise, I will be homeless </div><div dir="auto">when my mom passes away</div><div dir="auto">Or else put into a home.</div><div dir="auto">And that will be the end of me.</div></div></div></div></div></div></div></div></div></div></div></div></div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;"><br /></div></div></div></div></div></div></div></div></div></div></div></div></div></div>Melissahttp://www.blogger.com/profile/17458872329425009616noreply@blogger.com0tag:blogger.com,1999:blog-8942863686705986301.post-73141261724169116852020-01-29T04:51:00.000-08:002020-01-29T04:57:17.242-08:00How. 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The following is an open letter to the caregivers, a brother and sister, plus their mother, and their friend who lives with the mother and brother, who all came into my life….the sister on July 7, 2018, and the brother on August 2, 2018, to become my two caregivers, and to be, as they told me, the loving family i never had my whole life.</div>
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Warning, this is another long blog, because, well, i have alot to say, so….okay.</div>
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<span style="border: 0px; margin: 0px; padding: 0px; text-decoration-line: underline; vertical-align: baseline;"><strong style="border: 0px; margin: 0px; padding: 0px; vertical-align: baseline;">My Backstory First</strong></span></div>
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I am Autistic. Growing up in the 60’s and 70’s, my family never understood or accepted me. All of the millions of quirks, rituals, routines, etc. that i had, were always squelched; i was squelched, made to feel Othered, made to feel like i was bad, wrong, defective, and weird. Instead of being embraced, i was was often taunted, scolded and punished for being me. I was mislabeled as mean, selfish, lazy, spoiled, etc., when i was never those things. Whenever i would try to do the things they all wanted me to do, and i would not do it right, i would just become discouraged and i would withdraw. It became easy for me to just withdraw into my world and give the fuck up. Rather than to keep on trying to do the things, and always end up always, always, always getting it wrong.</div>
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My fears were always used against me by my family. Yes, i did have many many good times as a kid too, but i also was made to tow the mark and to mask, to hide the real me by my family, so that i could survive what was for me, sadly, a daily stinking rotten hell.</div>
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I couldn’t cope with being born into a family who were so rigid and narrow-minded. I always felt as though i was ganged up on. They all told me, daily, that i would never have boyfriends, never learn how to drive, never have friends…..that i would never work at any gainful jobs. They told me that i would never have any hope. Or any of my hopes and drams for my life, fulfilled.</div>
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And guess what? I have fallen through the cracks my entire life. I have never been able to work at gainful employment, nor have i been able to find much in the way of friendship, and real support and acceptance either….because even now in the year 2020 we Autistic are still sadly misunderstood, Othered, and oppressed by the vast majority of non-Autistic people. My life has been a lonely life of me never getting to date, go to parties, concerts, or get married or have children.</div>
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In addition, i was what they used to call a tomboy, and later on, in my mid-twenties, i came out to one of my two older sisters who i trusted, that i was bisexual. Today, i proudly call myself queer and non-binary. I have always been attracted to both men and women….and today that includes trans and queer people.</div>
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Growing up, i had so many, many meltdowns because of the way i was so often misjudged and then punished. I grew up terrified of my father, and indeed, i was never allowed to disagree with him, have my own opinions, or talk and joke with him. My brothers and sisters were always taunting and criticizing me…and exploiting and using my fears against me. It is no wonder that i grew up so afraid to stand up for myself both at school and at home. And in public. It has only been in the past 25 years that i have slowly overcome my fears of standing up to people, but even now, there are still times today when people’s meanness and insensitivity can send me running away into a crumpled hot mess. And. I. Just. Shut. Down.</div>
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I basically grew up feeling like i was my family’s punching bag and throwaway. I grew up feeling like i was unwelcome both in my own home and at school. I grew up feeling like i did not matter and like i was not supposed to matter.</div>
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Like i was not supposed to exist.</div>
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In May i will be 60 years old. I have still never been to a rock concert, and my siblings, except for two sisters and my mother (yes, i just recently made up with my second nice sister who lives with my mom) all still ignore me. I have still never had an actual job. I never got to pursue any vocational training so i could train for a career…so, i have been surviving my entire adult life on Social Security benefits, Medicare, Medicaid, and Section 8 housing assistance.</div>
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In 2012, my physical health (lymphedema in both legs, plus a lymphedema leg lump the size of a basketball on my inner left thigh) digressed to the point where i had to give up driving, give up my car and sell it, and i began needing caregivers. Sadly, that has only added to my lifelong hell, because in the first two years, from 2012 through 2014, and then one month in 2015, when Connie (a nice caregiver i had for four years, and who is back now again as my caregiver) and i took a one month break, all of those caregivers that i had in those time periods, were all abusive.</div>
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Except for Connie. Oh, i had problems with Connie as well in the beginning, but that was due to the trauma i had already gone through with the previous caregivers before her….and i still had some ongoing issues with Connie even when we grew closer at the end of her first four years with me, because i still had deep-seated trust and abandonment issues and i still kept misunderstanding her. However, out of ALL, out of every single one of my IHSS caregivers, she has always, ALWAYS had my back, she has always had compassion on me, and i know i can trust her with my LIFE, because she is honest, and she has never, and will never take my money or steal from me.</div>
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Connie was, and still is, my rock. She was my caregiver from March 2014 to March 2018, for four years, and is now back as my caregiver. She has been back as my caregiver since June 22, 2019, last year, when the brother caregiver literally, finally made good on his threats to abandon me, and drove off on me and ditched me….leaving me with NO breakfast, and NO way for me to get mt my dialysis treatment that day.</div>
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Connie left as my caregiver in March 2018 only because she got a job offer that was so good she could not turn it down. She felt i would be safe and secure with the two caregivers she had set me up with….but, sadly, i wasn’t okay. They both quit me after just three days, because of the meltdowns i was having over the supersonic loud thunder bass that was coming from a business East of me.</div>
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So, in came KJ, who i loved in the beginning. But then after just two months, she convinced me that Connie was not a real friend to me. I foolishly let her convince me to sever my ties with her. After that, KJ turned Jekkyl And Hyde on me, and she began threatening me that she would quit me if i did not start giving her money when she asked for it. Twice a week she would ask for gas money to the tune of $40 at a time. But then she began asking me to give her much larger sums of money that i could ill-afford to give her. But i would always give it to her……because she threatened to leave me with no care if i didn’t give her the money.</div>
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I handed over a total of $2109 to her when all was said and done, which never got paid back to me. And she forbade me to write out a running IOU so i would have it documented on paper. Next, she gave me a shower, and when i had two meltdowns during that shower….she took those meltdowns personally, and did not come to help me for two whole days, leaving me all alone to fend for myself again, with me thinking she was going to ditch me…..</div>
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I have had caregivers be no shows. I have had caregivers walk out and ditch me. It is the most dehumanizing, terrifying feeling when it happens. So, out of fear, i do what my caregivers tell me to do. Except Connie, she is real with me. I do not have to fear her.</div>
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Because of KJ leaving me for those two days, and me not knowing if she was going to even come back or not, i was forced to call a taxi so i could go to the bank to get my monthly SSA money, and that taxi cab was so small, that i ended up skinning my leg lump on the bottom of the door lip getting in and out, and two days later, when she did come back, my leg lump was red hot to the touch, and extremely painful.</div>
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A day later, i was still so shaken and upset from her leaving me, from her leaving me to think for two whole days that she was going to quit me altogether, and from all of the money she had already taken from me, that when she came that Saturday, she came in to find me in a state of physical whole body weakness. I was literally laying back in my lift chair almost passed out from the red hot infection on my leg lump, and from just pure mental exhaustion. She grew frightened. I told her i could not move to even go to the bathroom. I made her promise to not take anymore of my money, and to never abandon me, and she agreed she would not do either to me ever again. She was even in tears…..apologizing over and over…promising…that she was here for me for LIFE!</div>
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She called an ambulance, and i was rushed to the hospital, where they ran test after test on me. I was diagnosed as having full-blown Type 2 diabetes, sepsis in my leg lump…..yes, sepsis, folks…..plus….end stage kidney failure.</div>
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I was admitted, given heavy antibiotics, and then had a chest catheter placed in the upper right side of my chest, and two day later, i began dialysis. I was in the hospital a total of three long weeks. I was no longer diabetic, but diagnosed as just borderline again.</div>
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And then i began dialysis treatments in center on July 5, 2018. Two days later, KJ had me meet the sister caregiver, so that the sister caregiver could become my secondary caregiver and backup caregiver. After that, KJ got mean again, with even more threats to leave me, more demands for me to hand over even more of my money……so, with the sister caregiver now in my life, i finally got up the courage to fire KJ. The sister then got me hooked up with her brother as my second caregiver. He started working for me on August 2, 2018.</div>
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Note: i have never wanted to have a male caregiver, because i have never been comfortable around men due to my past with my father and brothers, plus my past with a police corporal and another friend that i had had who both also turned against me….but i was told by the sister caregiver, that the brother was gay, was a sweet angel, and that he would have lots of compassion and patience with me, so i agreed to have him work as my secondary caregiver. But as soon as he came on, i had hit it off with him so well because i loved his sweet and charming personality…..that he quickly became my main caregiver….and the sister became the secondary caregiver.</div>
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I believed him when he told me he would have my back all the way, that he would not let anyone bully, mess with me, and mistreat me.</div>
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The next two months my life was once again happy and blissful….together, the brother and sister both woo’ed me, and he and i, especially, really hit it off great…that was, until after the middle of that September when i had to go stay up at his and his mother’s house so he could rip out all of my carpets in my living room and bedroom….from then on, things all went right back downhill yet again for me. The brother and sister caregiver team also turned mean. Very mean.</div>
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You can read all about that here: <a href="https://melissaautisticfields.wordpress.com/2019/07/04/i-should-of-seen-the-signs-re-vised-and-re-edited/" rel="nofollow" style="border: 0px; color: #9f9f9f; margin: 0px; outline: none; padding: 0px; vertical-align: baseline;">https://melissaautisticfields.wordpress.com/2019/07/04/i-should-of-seen-the-signs-re-vised-and-re-edited/</a></div>
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And so here is my letter to them.</div>
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Dear Brother and Sister,</div>
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How dare you?</div>
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How dare you both come into my life, along with your mother, to charm and woo me and to tell me and make me believe you loved and cared for me, and then you all turned on me after two months? After i had already bonded with you all?</div>
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You woo’d me by getting that nice sleek fast Cadillac sports car with the bomb SiriusXM satellite radio….woo’ed me by taking me on outings, to the ocean, Santa Barbara, San Luis Obispo, Solvang, and to lots of restaurants, etc.</div>
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You both woo’ed and charmed your way right straight into my heart. I have never been able to have any children of my own. Yet you both won me over with your charming personalities, and right off the bat, became like the son and daughter i never had. Your mom became like another nice sister to me also. And i also bonded with the girl who stays with you and your mom.</div>
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How dare you also come in, as so many of my other past caregivers did, and start taking even more huge sums of money that i still could ill-afford to give you? Huge sums of money kept going out to you both, as well as a three pages long list of my possessions that were also taken from me. Even my personal files got taken from me….all of the important papers i had, all important documents i used to keep, important documents that i still need, got literally taken by both of you. Even my birth certificate! All of those important papers got taken right out of my desk, where they were all neatly organized, all in different-colored folders, and thrown willy-nilly into Rubbermaid tubs and thrown out, literally, into my back yard to get rained on and ruined.</div>
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All of my personal details about my disabilities were then taken and used, out of context, against me to help build me up to be a villain in the eyes of all of you, so you could use that info to your advantage.</div>
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You had NO right to read those files. And to try to use them against me. Yes, as my caregivers, you are also bound by the HIPAA laws.</div>
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You convinced me to go to your house for three weeks, so you could rip out my carpets. Yet reliable sources say you and sister were here at all hours of the day and night, spending the majority of your time partying in my middle room. There was always loud music, drugs and loud talking, laughing, and streams of people coming and going out of my middle room.</div>
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What should of taken 3 days at the most for you to do…took 3 weeks instead, because most of your time was spent getting drunk and high in my own home. My home is not that big, so it was just my bedroom and living room that needed the carpets taken out, and the hardwood floors sanded and finished. And guess what? My floors are still not all the way finished.</div>
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I chose to believe you when you told me, sister, that your husband was abusing you, so i opened up my middle room so that you could stay there to get away from him. But next, brother wanted into the room as well….so he came too, with his computers and furniture, then your friends all came along too…and you both took over that whole room and my home, and me.</div>
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There were many times when you would even place large barriers in front of the door so i couldn’t go out there.</div>
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I put up with the daily, daily, DAILY games you both played of always getting to my house late, often so late that i would sometimes not get to eat a thing until 3 in the afternoon! When you both knew that i, a borderline Type 2 diabetic, eat my breakfast at 11 AM. The daily games where both your phones would go to voice mail, and then suddenly when i was in full on meltdown mode because you were already a full hour late, you would finally answer my frantic calls, and then tell me you were “On my way, OMW, down the street,” etc. And i would wait even longer….till you would finally, finally show up.</div>
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Then i was forced to move up to your house for 3 whole weeks or else i would have to find a new care provider, because my carpets were making your asthma worse. Yes, i had to go, because you threatened to leave me as my care provider if i did not do as told.</div>
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After just one and a half weeks at your house, came the day you brought my transfer bench to the house, and you came into the living room where i slept, and as i was waking up, you stood over me and ordered me to take a shower. You. Literally. Ordered. Me. To take that shower.</div>
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It was the shower from hell. I got literally yelled at and belittled when you gave me that first shower at your house, brother. That day, when i told you how i do my showers, when i told you the workarounds i needed to be able to handle taking a shower….you suddenly got a dark mean scowly look on your face and you yelled at me and belittled me, telling me that:<br />
*I don’t care about myself<br />
*”Why can’t you take a shower like a normal person does?”<br />
*”Showers aren’t meant to be nice and pleasant. I have to sit with my back against an ice cold tub, and you don’t hear me bitching about that!”<br />
*I could not have the towel like i like on my transfer bench, so i can sit on the towel instead of the cold wet transfer bench, or the towel i like to have on the floor of the tub so that i don’t slip in the bathtub and fall. I’m a fall risk, remember?<br />
*And i also could not have my private parts wiped before the shower like i need to have them wiped, because, and your exact words were: “I am not going to wipe your fucking ass, when you are already going to be taking a shower.”</div>
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You refused to understand my need for accomodations.</div>
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And you just stood there angrily arguing with me as to why i had to take my shower YOUR WAY….YOUR WAY OR THE HIGHWAY.</div>
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It was only after i was in tears, sitting buck naked on the bathroom toilet, sobbing, did you suddenly snap out of that fucking pissy mean mood, and you apologized, told me you were sorry, that you loved me, that you loved me SO much, and so didn’t mean to hurt me….. and then you did wipe me, and then you did place the towels on my shower chair and floor of the tub. And the actual shower was fun.</div>
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I never forgot that incident though. And that was the start of my life going right back downhill to hell….yet again. It was from then on that you and your sister both began losing patience…and your tempers….with me.</div>
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Two days later, that Saturday, you again lost your temper with me when we had gotten home from dialysis. we had brought Kentucky Fried Chicken with all the fixin’s home for our dinner, and you went ahead and and served both our plates, before getting my backpack out of the car. You got angry and bit my head off when i asked for the backpack, and then got angry again when i asked you to fix my potatoes and cole slaw in separate bowls so i could handle eating my dinner.</div>
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I could not eat until you came in to tell me you weren’t angry at me anymore. Yes, you did do that afterwards, but that, together with the shower incident two days before, stuck with me. This was how life was for me with my father. My father never had patience with me. At all.</div>
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And then, i came home from those 3 weeks at your house to find the awful canary yellow walls that i still hate, to find my computer speakers broken, to find my TV sound bar no longer working, to find all of my belongings all gone, hidden, and put where i could not find them. You had PROMISED me that when i went to your house those three weeks, that none of my belongings would get moved, misplaced or tampered with….that i would have my living room painted either the lavendar or blue i had requested….but no. None of that happened.</div>
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You did get my sound bar working again. But i lost my computer speakers and nice subwoofer. The speakers you gave me are shitty, and i still have them because i am still struggling to climb out of the financial hole that KJ, you and your sister put me in.</div>
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You got angry at me then for being upset that my house was all turned upside down. You accused me of not appreciating all of the hard work you did on my floors and walls. The yellow walls you knew i would hate.</div>
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Yes. You both have nasty mean abusive as fuck tempers.</div>
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I put up with the perfume and cologne taste that was always on my oranges, until i could not stand it any longer, but when i began telling you, you got pissed off that i would dare to tell you i did not like having to taste your perfume and cologne in my oranges.</div>
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I got falsely accused of having candida on my scalp and body…and got accused of causing the sore that was on your left hand. Sorry, but Connie worked for me for 4 years, and never did i have candida. I have what is called “cradle cap” on my scalp. And she is a licensed LVN nurse.</div>
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Even so, you convinced me i had candida…and together, you and sister both talked me into having my hair buzzed completely off. This happened in November of 2018. I wish to God i had not of had you shave my hair all off, because i am now having a horrible time getting it to grow out to what it used to look like….it is growing normally on the back, and sides, but the top of my head is still quite thin, and i cannot grow proper bangs anymore.</div>
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When you began to get literally pissed off at me for always asking you if you got my backpack out of the car and put on the back of my wheelchair…or i would ask you to get me my backpack so i could have my reading glasses so i could read the menu in a restaurant we would go to….that was really cruel of you to get pissed at me for things like that, because you were here to HELP me, to CARE for me….you were not here for me to help you to make your life more convenient for you.</div>
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And there was a damn good reason why i was always so paranoid about my backpack. That was because when you first began working for me, and you picked me up the first time from dialysis, you had left my bag sitting there on the asphalt pavement of the kidney center’s parking lot and had to make a fast u-turn to go back to get it. Luckily, we were right in front of the clinic when you remembered my bag, and you did not have far to go to retrieve it.</div>
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You and your sister also kept losing your keys to my house, and you both kept losing your wallets…and in addition to that, you seemed to always be overdrawn on your bank account, so i was always, always having to give you both money, for gas, for snacks, for all of our meals, out, i paid for every single one of the outings we went on. Also, i would often find money going missing from my own wallet.</div>
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I even paid for some of sister’s medications that she needed, and for some of her medical office visit fees that she had.</div>
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Again. You and sister were like a son and daughter to me! I loved you both with all my hart, and i loved your mom and A too!</div>
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I did not ask or need to be ordered around in my own home. I did not ask or need for you to put me through literal boot camp in my own home. I asked for and needed your respect. Your compassion. Your patience. And to learn about my disabilities of Autism, Lymphedema, Kidney disease, and borderline type 2 diabetes. I needed you to both be here for me. For ME.</div>
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We would go to my medical appointments..and instead of you having my back in those appointments, you always sat behind me, rolling your eyes. (If sister took me, she would sit there engrossed in her phone.) If i had to stand up to the nurse or doctor, or counselor, i was always the bad guy in your eyes…..neither of you ever saw the ableism and misjudgments i was experiencing….you only saw my reaction, and you villified ME for it, instead of seeing the ableism i was experiencing.</div>
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Next came the face mask. Yes, you suddenly began showing up wearing a large face mask. Connie never felt the need to wear a mask around me…..but you did. Why? I took a shower everytime you ordered me to. I had to or else i would get yelled at and berated again. Finally i was able to talk you out of wearing the face mask. The face mask triggered me because it hid your mouth, and your smile…it placed a barrier….a wall….between us. A few weeks of the face mask, and i finally talked you out of wearing it.</div>
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But then next came the awful blindingly snow white medical scrubs…medical scrubs that no one wears anymore. Medical scrubs that you seemed to know would trigger me, because snow white medical scrubs are worn in mental institutions. And you wanted me to feel Othered by those horrible scrubs.</div>
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I was told off when i told you how i wanted my toast to be cut, buttered, and the strawberry jam spread on it. And when i told you how much mayo and seasonings to put in my tuna. And when i would tell you i could taste the strong taste of yours and sister’s cologne and perfume on my oranges in the mornings. It was as if i had no say in how i should have my food fixed. That is so many levels of wrong to not respect how i like my food to taste.</div>
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I was given an unnecessary guilt trip by your sister, when one night at dialysis, she wanted to rush me out of my chair so she could hurry up and get a Christmas tree for her and her kids, when she could of done that on her many nights OFF from working for me. She even made it a point to tell me, several times how i made her children cry that evening, all because i was late getting off the dialysis machine.</div>
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Sister began taking your Cadillac to use for herself, and she did it every single time whenever you and i were going to go somewhere on an outing, and one night began playing a mean “Ya, ya, ya” game with me via Facebook Messenger when i kept hounding her to get back here with the car so we could get out of the house. She caused me to not be able to eat my dinner till well after 8 PM that night due to her selfishness.</div>
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How about Christmas at your house? I got treated to another of your dark mean teenage angsty bad moods. You already knew that i was badly hurt in many of the churches i used to go to….so, certain worship songs, certain styles of preaching, even certain Christian rock, have become PTSD trigger for me, yet that evening, after dinner, you decided to put on a series of prayer videos that you already knew upset me, and when i began rocking, crying, and covering my ears, and begging you to turn it off, you got mean, and told me you had every right to listen to that because, Christmas. I ended up having to get up and leave the room……it was only when your mom went into talk to you on my behalf, and yes, she did have my back that night, that you snapped out of your shitty teenage angst mood, then you came into the office where i was, and apologized.</div>
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Then i got told i could no longer talk about Rebecca, the sweet imaginary friend who i had made out of the my dialysis machine. You even cruelly told me that you had run over her and killed her when you wrecked the nice Cadillac the day after Christmas. You stopped going in to the treatment room with me at dialysis.</div>
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You stopped coming into the lobby to wait for me after dialysis, and the poor techs had to always come out to try to find you and your sister’s cars.</div>
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You stopped coming into the lobby to wait for me after dialysis, and the poor techs had to always come out to try to find you and your sister’s cars.</div>
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You and your sister were often late picking me up from dialysis. Sometimes even as much as 90 minutes late.</div>
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You took me to a much needed mental health appointment, and then left me there stranded, waiting for you to come, and the clinic was closing, with you and the van you had driven us to that appointment in, gone. Just..gone.</div>
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When me and my therapist tried to get ahold of you and your sister, both your phones went straight to voice mail. He had to try to get me a taxi, or the Smooth bus to take me home, but he could not get me any rides. As far as i was concerned, you had left me stranded there at that clinic to fend for myself and for me to find some way to get myself home.</div>
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When my dialysis social worker finally got ahold of you, you finally came to get me….but instead of you being understanding and apologetic for leaving me there, you angrily lit into me for being upset, even though i was completely justified in being upset. You lit into me and called me selfish and self-centered, and called me a diva.</div>
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You literally told me i had no right to be upset.</div>
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Whenever i would have a meltdown, you would instantly yell at me and scold me, and then the meltdown would escalate to where you would both threaten to leave me…and this was especially frightening when this would happen on my dialysis days. I began to fear that i would someday be forced to miss a dialysis treatment. I was always in a state of fear daily, fear, of you two being late, of you two pulling a no-show, of you two actually causing me to miss dialysis…..and guess what? It did finally happen. Last June.</div>
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All of this caused me to be in a constant and extremely high state of stress. Anxiety. Worry. Fear. That it began to affect my catheter and my dialysis treatments. Soon, i was having to have the clot-busting drug, Acti-Vase pit in my catheter…every two weeks, and then, every week. Next came weekly visits to the cath lab at the hospital, and several catheter replacements.</div>
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My blood pressure while on the dialysis machine, was always spiking dangerously high, and whenever i would have a bad time scene with you and sister, i would go into dialysis with my blood pressure literally at <em style="border: 0px; margin: 0px; padding: 0px; vertical-align: baseline;"><strong style="border: 0px; margin: 0px; padding: 0px; vertical-align: baseline;">stroke level. </strong></em></div>
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Because i had to go to your house for 3 weeks, i never got to follow up on getting my fistula fixed. I had had surgery that September 14, to place that fistula in my left upper arm, and it didn’t take…it never developed….</div>
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Then when i tried to get a new one with a new surgeon up in San Luis Obispo, you had the car wreck, so we were back to using your sister’s car, or your friend’s car again, so i could never schedule the surgery to get a second fistula.</div>
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It always seemed like i was on trial. I felt like i always had to prove my disabilities to you. Even then, you still would park us places where it was hard for me to get in and out of the car. You would park places where i had a curb, or a tall thick bush right in my way.</div>
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Do you realize that whenever you got upset at me, how deeply it hurt me? We had meeting after meeting between me, you, sister, and my kidney center social worker…in the hopes that we would finally have a breakthrough, and you’d both finally get me, you’d both finally get my autism, and my sensory issues, and what my triggers are. And you’d finally get my physical limitations.</div>
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But. It never happened. Because, both you and your sister did not truly care. In fact, it seemed as though you both would deliberately provoke me to have those meltdowns, so that in the heat f my meltdown, i would fire you, and then you could take me to court for mental abuse. I saw the evidence of this everytime we would have an upset. You would always say things like:<br />
“Brother/Sister, we need to document this.”<br />
“Oh, this is a pattern with you, this is what you always do, this is what you did with all your past caregivers…this isn’t autism, this is you using your autism as an excuse”<br />
“Document this one.”<br />
“Document this.”<br />
Over and over you’d say we you needed to document it evetytime i would have a meltdown.<br />
“You’re not really autistic…my friend is autistic, and she doesn’t act like this!”</div>
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No. No. No. No. Just writing this now, hurts. It hurts that you saw me as a threat, that you saw me as a monster, as the bad guy. As a germ, even.</div>
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I wanted to die. I wanted to quit my dialysis and die.</div>
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It got to the point where i was only happy when i was at dialysis….because….at dialysis, i was and am accepted….at home….all i got was cold hard ableism. At home i got provoked into daily meltdowns…then gaslit…squelched…oppressed….yelled at. scolded, yelled at some more….then days upon days of being literally ignored…..</div>
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I began to want to run away from my home because of the hell my home had become. Not only did you and your sister take my money and material possessions. You took from me, my dignity, my joy for living, my self esteem…my very sense of BEING.</div>
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I continued to have to taste your cologne and perfume on my oranges.</div>
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I continued to feel all alone, and totally on my own whenever i went to a medical appointment.</div>
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The sister’s mean moods got even worse. To where i stared getting yelled at and berated just like she would yell at and berate her own children.</div>
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You never got the Cadillac back.</div>
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Every afternoon i would spend in here all alone while you were all out in that middle room. I was all alone and i was lonely. I would always have to get up from my lift chair or computer chair to physically walk back there to the top of the steps leading from the laundry room to the breezeway and middle room, and call out to you….i often had to even come into the middle room to come to you if i needed help.</div>
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If i was in the shower, i had to always call out to both of you several times before you would come back into help me in the shower. Because. You would both literally go out in the middle room and leave me all alone when i would shower. I was left all alone every single afternoon in here, and i always, ALWAYS had to go to you to get your attention.</div>
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In May i couldn’t take it anymore. Things got so bad that i was going to actually hop a bus or train, and run away, from my own home. When you both came late to get me to dialysis on the morning of May 7….then you both drove in yelling and screaming at me and telling me my autism wasn’t real, that i was just a bad mean person…..and then i got yelled at even more that night after dialysis for being upset…and once again, rightly upset….about my dinner being completely inedible because of the way the cheese was melted so thick all over my spaghetti…..it just all snowballed….that, coupled with the daily “Being Late Game” you both loved to play with me….all the money you both took from me…all of my nice washcloths and towels all now gone, the blankets my mom gave me, my full length mirror that i had in my bedroom also gone, my Living Bible gone, a beautiful glass pitcher broken, my butterfly wax candle scent burner broken, me, and my home being taken over by the both of you…..how i liked things to be never respected…i didn’t matter..no, i did not matter to either of you….i couldn’t take it anymore…..i threw my food on the floor out of sheer hurt, sheer frustration, and then ripped the pictures that your daughter drew for me off the wall, i didn’t do it to be mean, i did it because i was done with all of the hate you two were throwing in my face all of the damn fucking time.</div>
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That was why i had Connie come back to work Mondays and Fridays, and i was going to have you, brother, work the rest of the days and hours. So that sister could be back with her children and have her time back. And so i would not have to deal with her temper and yelling at me anymore.</div>
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That worked until you realized you would lose money by having Connie come work the two days a week.</div>
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Things finally culminated when you came to work the Saturday of June 22 reeking of cologne, and when i told you i was afraid i would taste it on my oranges, you flew into a red hot rage, gave me your two week’s notice, and then you literally LEFT me, with no breakfast, and no way for me to get me to my dialysis treatment that day.</div>
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And then you went to the labor board. All because i refused to sign the incorrect fraudulent timesheets that you kept trying to submit.</div>
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You and your sister never truly loved or cared about me, and neither of you ever had my back. If you had cared, you would of treated me and my home with respect and dignity, you would of listened to me, you would have read my blogs, you would have read all of the other things i gave you to read on Autism, neurodiversity, disability, and disability rights, and you would of believed me and you would of had my back. You would of both had my fucking back. I also include you, Lucky Mama.</div>
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You wouldn’t have stolen from me and taken all of the money you took. You would of respected my routines, rituals, sensory issues, triggers, quirks, etc. You would have respected me, seen me and heard me. You would have shown UP for me.</div>
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I have had nothing but nightmares most nights since you all left me. Nightmares. Nightmares. Nightmares. Nightmares that won’t stop.</div>
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How dare you.</div>
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How dare you even call yourselves caregivers. You are not caregivers. Caregivers have a real heart, and treat and accept their clients as they are, and work to get to know them, their likes and dislikes, and go out of their way to honor their clients and to make life as happy and pleasant as it can be for us.</div>
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You are both liars, thieves, and scammers, and you both belong in prison, and never allowed to be caregivers ever again.</div>
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And if you believe in God like you both always told me you did, you will read this and realize the full on gravity of what you did to me.</div>
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Sincerely,</div>
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Melissa Fields</div>
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Melissahttp://www.blogger.com/profile/17458872329425009616noreply@blogger.com0tag:blogger.com,1999:blog-8942863686705986301.post-14553436054716211902020-01-15T18:37:00.002-08:002020-01-15T18:37:30.754-08:00This Needs To Be Said<div class="_2cuy _3dgx _2vxa" style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; margin: 0px; padding: 0px; vertical-align: baseline;">
I needed to put this into blog form because what i am writing about below, is a very real and frightening thing that our current nightmare in chief is actually proposing. He is basically proposing a new rule that will increase the frequency of Social Security evaluations for those of us who are disabled and already suffering at the hands of a very meager system that barely takes care of us as it is.<br />—</div>
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I have linked an article below which tells more about this proposed new law….a new law that cannot happen, as it will mean hundreds of thousands of us disabled folks will have NO way to survive…because this will cause many of us to lose our SSI and SSDI benefits.</div>
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Just the thought of this makes me sick to my stomach, and every other fight or flight emotional response imaginable.<br />—</div>
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I have been disabled and unable to work at gainful employment my entire adult life. I am now almost 60 years old, will turn 60 this coming May. On top of my mental disabilities and disability of autism, i now am physically disabled and have end stage kidney failure.<br />—</div>
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Losing my Social Security Survivor’s benefits will kill me.<br />—</div>
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The vast majority of disabled people receiving SSI and SSDI are not faking it, as i am not, and already, the re-evaluation process they put us through is more often than not an ordeal that is dehumanizing, cruel, and traumatic.<br />—<div style="border: 0px; line-height: 1.71429; margin-bottom: 1.71429rem; padding: 0px; vertical-align: baseline;">
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On top of that, they don’t allow us enough time to fill out the very detailed forms they give you, and eval appointments are made to where you cannot cancel them for ANY reason..not even for dialysis, like i have 3 times a week. And the forms themselves are huge books, literally.<br />—<br /><div class="_2cuy _3dgx _2vxa" style="border: 0px; margin: 0px; padding: 0px; vertical-align: baseline;">
This is like a nightmare come true for me. I have been on SSI, and then SSA for the past several decades, and whenever i have had to go through a re-evaluation, it sends me into an anxiety so high that i get literally sick over it…..and that is not because i have anything to hide, it is exactly because these re-evaluations are downright demeaning and terrifying. They often will send us to a psychiatrist, yes, a psychiatrist, who will yell at us and do all they can to antagonize us with the deliberate intent to cause a meltdown. The first time i saw a Social Security psychiatrist, he upset me so badly i ran out of his office screaming, shaking, and crying so hard i couldn’t hardly breathe. My grandmother and mother had to drive a whole mile to catch up to me, and then, even though he wrote saying i would never be able to work or function in the normal world, i lost my SSI for four months, and i went into a horrible depression where my hair fell out in huge clumps.<br />—</div>
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Me having to see two such psychiatrists in 1981, then again in 1990, traumatized me to the pint that ever since then, when i am met with a notice of evaluation from SSA, i literally go into a full on panic that i will get another mean psychiatrist, and lose my benefits again because of just this same type of Draconian program the then Reagan administration cooked up to weed out the “supposed fraud” in the system.<br />—<div style="border: 0px; line-height: 1.71429; margin-bottom: 1.71429rem; padding: 0px; vertical-align: baseline;">
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I had two more evaluations in 1999 and 2007, but luckily, this time i got a very nice lady to evaluate me, and i had friends go in with me who had my back.<br />—</div>
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But increasing the frequency of evaluations did not work then. And it will not work now.<br />—</div>
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When Reagan originally did this, this caused countless disabled people to literally become homeless and die. The same will happen if 45 is allowed to unleash this cruelty.<br />—</div>
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Thank you, <a href="https://www.facebook.com/lmxzb?__tn__=%2CdK-R-R&eid=ARCBNfc4cmoC2QoQwcB4gCS13Tnpg7qPVlmPUAC5MYTPm2jU3CgcqztbVWpTUyh6Me9vqQoW0fdO3lNB&fref=mentions" style="border: 0px; color: #9f9f9f; margin: 0px; outline: none; padding: 0px; vertical-align: baseline;">Lydia X. Z. Brown</a> for posting this and for being interviewed in this article.<br />—</div>
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Now you know why i hate 45.<br />—</div>
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<a href="https://supermajority.com/news/education-fund/the-trump-administrations-proposed-changes-to-disability-benefits-will-hurt-the-disabled-according-to-advocates/?fbclid=IwAR2Z-QH2lRiWZM-Cms04tOn9jH1n2ubfi2YlAFvp1Uw5neUhcbthaHqkTcY" rel="noopener nofollow" style="border: 0px; color: #9f9f9f; margin: 0px; outline: none; padding: 0px; vertical-align: baseline;" target="_blank">https://supermajority.com/news/education-fund/the-trump-administrations-proposed-changes-to-disability-benefits-will-hurt-the-disabled-according-to-advocates/?fbclid=IwAR1eYQdYjegAFlnhDlmvBFIkHyr2i-IZEci_lTs2k58EHpErd-m0GxFyGE4</a></div>
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Melissahttp://www.blogger.com/profile/17458872329425009616noreply@blogger.com0tag:blogger.com,1999:blog-8942863686705986301.post-1729682657604213632019-09-22T14:20:00.000-07:002019-11-26T21:55:54.330-08:00Multitudes-A Way Too Long List Of Things Broken And Taken By My Past Caregivers<div style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin-bottom: 1.71429rem; padding: 0px; vertical-align: baseline;">
Posting this mainly for my records. Because the two people, a brother and sister, whom i let into my home and trusted to care for me from July 7, 2018 through June 21, 2019, took so much from me that i am only now way too slooooooowly trying to replace.</div>
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<span style="border: 0px; margin: 0px; padding: 0px; text-decoration-line: underline; vertical-align: baseline;"><strong style="border: 0px; margin: 0px; padding: 0px; vertical-align: baseline;">Things The Brother Broke</strong></span><strong style="border: 0px; margin: 0px; padding: 0px; vertical-align: baseline;"> </strong></div>
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*A shiny black and silver chrome butterfly candle wax scent burner i had in my kitchen that i really enjoyed because—butterflies—the nice scents that filled my house—and the way it lit up my kitchen counter where it sat.</div>
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*A large one quart sized glass pitcher with Cobalt Blue trim that i used to keep all of my rocks in.</div>
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*One large office-sized stapler</div>
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*One purple electronic rechargeable Swifferjet mop</div>
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*A green Hoover upright vacuum cleaner with attachments, i had bought in 2012, with money from the sale of my car.</div>
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*My Klipsche computer speakers and subwoofer that i had on my desktop computer, I really enjoyed the way they sounded. He replaced those speakers with speakers that are hard to adjust the volume on, and they are also quite shitty-sounding.</div>
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<span style="border: 0px; margin: 0px; padding: 0px; text-decoration-line: underline; vertical-align: baseline;"><strong style="border: 0px; margin: 0px; padding: 0px; vertical-align: baseline;">Things The Brother AND Sister Both Took/Stole/Misplaced</strong></span></div>
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This is a quite long list, folks, so grab a cup or glass of your favorite beverage, iced, or warm, and relax and read on, please.</div>
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*A five step step ladder i had also purchased in 2012 with the money i had from the sale of my car.</div>
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*Two large green travel duffle bags i had purchased from Amazon</div>
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*A large black canvas suitcase on wheels with handle that a friend bought for me</div>
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*One small zipper travel carrying case big enough to carry all makeup, cosmetics, medications, vitamins, etc., in case i travel</div>
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*A $25 dollar complete manicure-pedicure case i also bought on Amazon—i did finally replace that this month.</div>
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*Five adult coloring books that a friend and my sister both bought for me</div>
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*Two decorative plastic bowls i bought to organize and keep my coinage change in. One was teal blue, the other white with teal blue fish on it.</div>
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<span style="color: #1c1e21; font-family: Georgia, serif;"><span style="font-size: 17px; white-space: pre-wrap;">*A full length mirror i had bought in 2007 at Target</span></span></div>
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*One of my heavy duty beige-colored folding chairs is still missing.</div>
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*One twelve piece screwdriver set i also bought on Amazon—i also just replaced that this month.</div>
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*A 17″ HP computer monitor</div>
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*One 54 set of multi-colored gel pens for coloring</div>
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*All of my fine tip and wide tip Crayola markers for drawing, art.</div>
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*Most of my multi-colored Sharpies</div>
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*All of my highlighter pens</div>
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*All of my sketch pads i would do my drawing and art on</div>
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*All of my multi-colored file folders</div>
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*Two pairs of my good scissors</div>
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*Two rolls of tape, one duct tape, the other packaging tape<br />
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<span style="color: #1d2129; font-family: "georgia" , serif; font-size: 17px; white-space: pre-wrap;">*One of two of my small trash cans-it is hot purplish pink</span></div>
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*Four tubes of Remedy Olovamine Anti-Fungal Cream</div>
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*One seven ounce tube of Silva-Sorb wound care ointment</div>
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*Ativan—my Ativan pills were always counting as less pills in the bottle than my refill amount. The last time i got a refill it was for 90 pills. 90 pills in a refill—yet when i counted them a few days later, i ended up with 86 pills. I had not taken any of my Ativan at that time, and was using my CBD oil instead to control my anxiety. As of Brother’s last day working for me, i had only three Ativan pills left, and i had not taken but maybe ten pills all told out of the 90 pill refill for my use. Just 3 pills are now left in a bottle that was supposed to at least have 80 left by now, because, that was all of the pills i personally took from that bottle.</div>
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*Candy–several pieces missing from bags of—<br />
–three red bags of Lindor Truffle Chocolates,<br />
–one quarter of a jumbo bag of Mars Minis (includes miniature snack sized 3 Muskateers, Milky Way, Milky Way Midnights, Twix, and Snickers),<br />
–most of the mint and caramel chocolate squares also missing from a bag of Ghiradelli chocolates that my friend and past caregiver, Connie Carter gave to me for my birthday this year</div>
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*Other candy from my candy dish in living room</div>
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*Other candy from my candy drawers<br />
—peanut butter M&M’s<br />
—Reeses white chocolate peanut butter cups<br />
—Reeses regular chocolate peanut butter cups<br />
—Handfuls of my assorted hard candy</div>
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*Food—i would find my pepperoni pizza Hot Pockets routinely missing</div>
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*My red Solo cups</div>
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*Cleaner/Air Freshener—i would routinely find my Windex, lemon Lysol cleaner, and Febreze gone, and out in the garage room</div>
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*several of my C-cell, AA, AAA batteries,</div>
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*several flourescent curly cue light bulbs,</div>
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*one of my power failure lightbulb lights that look like a lightbulb and socket</div>
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*my canned air that i use to clean out my computer</div>
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*electronic wipes</div>
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*One soft black knit cap that my mother bought for me</div>
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*Two light velour, velvety-textured blankets my mother bought for me. One is a full blanket, and is dark forest green-colored, the other two are lap and shoulder wraps, and are a dark rusty red color.</div>
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*8 large bath towels</div>
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*10 washcloths</div>
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*two kitchen towels</div>
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*My birth certificate</div>
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*10 copies of my SSI re-evaluation paperwork from 2005 and 2007</div>
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*One long wand Swiffer duster</div>
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*Two brooms</div>
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*Two dustpans</div>
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*One 12 pack of soft white crew socks</div>
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*One 60-ounce blue Correlle or Pyrex mixing bowl</div>
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*Two white plastic coffee mugs</div>
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*3 small steak knives</div>
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*Several carving and cutting knives</div>
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*Several pieces of silverwear, teaspoons, forks, tablespoons, butter knives</div>
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*My measuring spoons are also all gone</div>
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*Two kettles/pots</div>
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*Two cooking skillets</div>
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*I used to have a collection of over 55 music CD’s, 55 plus books, and all of those are also gone</div>
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*All of the old clothing i used to have is also gone now—several cute tops, and pants that i knew would fit me if i ever were to lose enough weight to fit in them again, so i would not have to purchase new ones</div>
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*Four dark blue money pouches</div>
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*Two boxes of staples that go with my stapler that he broke, all of my staples are all gone now too.</div>
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*3 packs of large manila envelopes</div>
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*2 packs of medium sized manila envelopes</div>
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*2 boxes of Mead white legal sized self adhesive privacy envelopes</div>
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*2 boxes of small Mead white envelopes</div>
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*A red ruler, and green ruler, are also gone</div>
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*10 large white poster boards</div>
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<span style="border: 0px; margin: 0px; padding: 0px; text-decoration-line: underline; vertical-align: baseline;"><strong style="border: 0px; margin: 0px; padding: 0px; vertical-align: baseline;">Things They Took That They Did Return</strong></span></div>
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*A small crystal cross</div>
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*My desk drawers</div>
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*My artwork and art portfolio</div>
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*Three of my four heavy duty beige folding chairs</div>
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*my white Hoover carry vacuum that belonged to my grandmother, and is over 40 years old</div>
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*My green Living Bible</div>
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*Some of my colored file folders</div>
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*Some of my Sharpies</div>
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*The wing that broke off of my angel that is in my bedroom</div>
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But the above things that they broke and took from me, are all things that, either i myself worked hard to buy out of my own pocket, things that were given to me by friends, my mom and one of my sisters, and things i already had that i needed to keep on hand—-now i have to work to replace ALL of it. And i doubt i can do so without some sort of a financial miracle.</div>
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In Home Care Providers who are tasked to care, but who instead come in and take over a clients’ entire home and even herself—-then use and steal from that person who is sick, vulnerable, disabled, and on a fixed low income, need to be held strictly accountable, placed into prison, and then made to work to pay that person back for everything they broke and took from that person.</div>
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Every single thing that they took and stole from me.</div>
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I now need to go apply to get a whole new birth certificate. All of my SSI paperwork is gone now too.</div>
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I have canary yellow walls that wake me straight up out of a sound sleep too early in the morning, on bright sunny mornings, because of their brightness.</div>
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I was routinely told by that brother and sister that my autism was not real, that my physical mobility limitations were just me being “lazy” and trying to get my way, that i was just being mean and demanding and spoiled. Told that i didn’t appreciate them and all they did for me.</div>
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When i was asking them to accomodate my disabilities.</div>
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I still have nightmares almost nightly, about this brother and sister, who came into my life, telling me they were going to be the friends and family that i have never had, and always have longed for—then, once i put my trust in them, they turned around and took full on advantage of me, and took FROM me.</div>
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While i spent 3 long weeks away from my home, so that he could rip all of my carpets out and refurbish the hardwood floors underneath, and paint my living room walls the nice sift blue or lavender that i requested he paint them—-they were spending much of that time with both brother and sister partying till all hours of the night and morning in my garage room. And painting my walls a color they knew i hated–hate.</div>
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Also realizing that they basically took much of my time away from my home to completely comb through all of my personal papers, documents, etc., and take even those from me. To actually use against me!</div>
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To realize that that job of taking my carpets out, then refurbishing the hardwood floors underneath, should of only taken at least a week at the MOST for them to do—but it took the brother and sister team an entire three weeks—with me up at his house staying with his mom and his girlfriend, where i was badly uncomfortable—-that was not okay.</div>
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The yellow walls in my living room were not okay, and are still not okay.</div>
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The constant gaslighting i got from this brother and sister,<br />
the way they were always dismissing my needs and requests,<br />
and dismissing the way that I liked for things to be done for me, IN MY OWN HOME,<br />
the daily promises they would make to pay me back for the stuff and money they took,<br />
then they’d break those promises<br />
the daily making promises that we would go this place and that, then<br />
suddenly the plans would change, and or she would take the car we were to go in<br />
so then we could not go that place or this place<br />
the daily circus of them always being late without letting me know,<br />
their phones shutting off and going straight to voice mail,<br />
the constant worry of are they going to leave me without a way to get to dialysis, a way to eat, or are they going to leave me stranded at yet another medical or mental health appointment<br />
the daily battles just to be heard and seen, to really be heard and seen by them,<br />
the daily battle to make them see my autism, see and believe my autism, see and believe my physical disabilities<br />
all of my things being moved, and gone, all of my things and plans and routines—always being moved, always taken, always gone, always messed with<br />
my head always being messed with, my head, my emotions, my feels, always being fucking messed with<br />
the constant changing of schedules, the constant upheaval—not to mention the large sums of money they took from me, from my duffle bag, and from me, they asked for it all the time—<br />
—when i would come home with five hundred in my duffle bag, and end up next day with $180 of that because one of them snuck in and took from my wallet while i was sleeping<br />
their unpredictable temperament—one day we would all be okay, the next day, even sometimes the next minute—suddenly i was being yelled at and scolded again<br />
I was often yelled at and scolded by them<br />
i was expected to act and do their idea of normal neurotypical<br />
if i didn’t, i was told about it loudly and with shame inflicted upon me<br />
this has all affected my kidney dialysis, has even affected me being able to go in to get the surgery that i STILL need to get a permanent kidney dialysis access port placed in one of my arms, so i can finally be free of this awful chest catheter.</div>
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I am still reeling greatly from the effects of having the brother and sister as my care providers. I am reeling mentally, emotionally, and financially. My credit cards? Are all still maxxed out. I feel as if i have been placed deep into a dark hole that i will now never be able to climb out of. And this hurts on all levels. And brings me to a depth of DAILY despair that i can still not put words to to fully describe the daily agony and anguish i walk with. Because of the blatant and deliberate intentional cruelty of a brother and sister who kept telling me how much they loved and treasured me.</div>
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I have only been able to replace some of the towels they took, and a few other things. But i need so much more still.</div>
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This is not okay.</div>
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I am going to keep on writing. It’s the only sure thing that i still have of being able to process through all of this garbage i had to live with day in and out for the past year.</div>
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One good piece of news is that i do have Connie back in my life now too. She was my caregiver for four years, from March of 2014 to March of 2018, and only quit because she got an excellent job offer that she could not turn down. She came back when the brother suddenly turned on me, leaving me with no way to get my breakfast, and no way to get to dialysis on June 22, 2019.</div>
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The caregiver abuse that i have suffered, sadly happens to far too many disabled and elderly disabled people. Serious reform needs to happen so this can finally be stopped.</div>
Melissahttp://www.blogger.com/profile/17458872329425009616noreply@blogger.com0tag:blogger.com,1999:blog-8942863686705986301.post-47134479616785552672019-08-12T22:44:00.000-07:002019-09-04T23:38:36.881-07:00I Did See The Signs: When Fear Makes One A Prisoner In Their Own Home, Re-vised And Re-Edited Again<div class="_2cuy _3dgx _2vxa" style="box-sizing: border-box; color: #1c1e21; direction: ltr; font-family: Georgia, serif; font-size: 17px; margin: 0px auto 28px; overflow-wrap: break-word; white-space: pre-wrap; width: 700px;">
A new revised edition of this blog, for more clarity, plus updates.</div>
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I did see the signs <br />
of more caregiver abuse as they began to come up<br />
after the nice honeymoon phase i got with both of them, a nice brother and sister package they were<br />
last July and August when they both came to work for me and be my new friends<br />
Sister came July 7, and brother came August 2.<br />
<br />
Oh, at first, we were gonna all be a team, a family, the happy accepting family i never had<br />
Right away, i met their mother, who was very sweet to me<br />
They were all so sweet to me in the beginning<br />
<br />
I did see the signs<br />
when they kept telling me they still hadn’t read my blogs or the other material i gave them on my autism, my meltdowns, my likes, dislikes, triggers, etc., so that those would help them to better understand and get me<br />
<br />
I did see the signs<br />
when, right from the get-go, they were both always late getting to me, and also picking me up from dialysis and then their phones would go dead so i could not reach them to find out when they would be getting to me or even IF</div>
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I did see the signs <br />
when shortly after brother began working for me, he went to fix me tuna sandwiches for my dinner one night, <br />
and he would not listen to me when i kept telling him how i wanted them to be fixed. <br />
He went and put very little mayonnaise in the tuna mix, <br />
they were dry, <br />
and i had to ask him to come back in and redo them, and he got irritated because he was leaving to go party with his friends..<br />
He did redo them but showed his irritability towards me at having to do so.<br />
But it was still the honeymoon stage, so he quickly apologized, saying he should of listened to me when i told him how i wanted the sandwiches fixed</div>
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I did see the signs <br />
when i had to walk out of an appointment with my primary care physician because brother ordered sister not to sit there waiting with me, and he needed her to come help him<br />
<br />
I did see the signs<br />
When i was ordered to go stay with him and his mother so they could pull all of my carpets out of my living room and bedroom. The reason? Was because my carpets were agitating his asthma. He said if i did not go to his house to stay, and let him pull my carpets out, he would quit working for me and i would have to find another care provider.</div>
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<span style="background-color: white;">I did see the signs</span><br />
<span style="background-color: white;">when after one and a half weeks at his house, he ordered me to take a shower, and then when i explained to him the accomodations i needed to be able to handle taking a shower, he got irate, refused to accomodate my shower workarounds, telling me showers are not meant to be pleasant and comfortable</span><br />
<span style="background-color: white;">He also told me “Why can’t you take a shower like normal people do?” </span><br />
<span style="background-color: white;">All i asked for and needed was to be wiped, then to have a towel on my transfer chair so that i would not have to sit on the cold surface, and another towel on the bottom of the tub, so i would not slip in the tub</span><br />
<span style="background-color: white;">He accused me, wrongly, of not caring about myself!!</span><br />
<span style="background-color: white;">Then threatened to quit me if i did not take that shower---even though i was upset, having a meltdown, frightened and in tears</span><br />
<span style="background-color: white;">Finally, when i had completely broken down</span><br />
<span style="background-color: white;">Sitting buck naked on the toilet in the bathroom cold and shaking,</span><br />
<span style="background-color: white;">he snapped right back to nice and compassionate and i got a pleasant shower</span><br />
<span style="background-color: white;">I never forgot that though, because that showed me that he had a temper</span><br />
<span style="background-color: white;">I am afraid of tempers because of the way my father and most of my siblings treated me growing up</span><br />
<span style="background-color: white;">Much similar to the way the brother caregiver was treating me</span><br />
<span style="background-color: white;">The way G, a friend i used to have, treated me from 2006 through 2012</span><br />
<span style="background-color: white;">Then a long string of abusive caregivers from 2012 to 2014, then 2015, when Connie and i needed a one month break</span></div>
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I did see the signs<br />
When he got angry at me that Saturday after dialysis for needing him to replate my food and get my backpack inside where it would be next to me before i could eat the KFC he had bought for all of us
<span style="background-color: white; font-family: Georgia, serif;">He had plated all of my food on the same small plate, and all of it was bleeding into each other.
That is a sensory issue for me, a big one.</span>
<br />
Sensory issues mean i need for things to be a certain way<br />
why didn’t he respect that?<br />
Why couldn’t he respect that?</div>
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I did see the signs <br />
when it took a whole three weeks for him to get my floors done in my house</div>
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I did see the signs<br />
when i finally came home on Monday October 8, 2019 to find bright canary yellow paint on my living room walls, many of my things moved completely, waaaaaaay too many of my things missing, my computer speakers no longer working, and my TV sound bar no longer working, when he again got angry at me and accused me of not appreciating the hard work he had done for me, when i did appreciate their hard work alot, but all i could see was that i had lost my things, my space, my HOME!</div>
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There were lots of fun and happy times, especially in the first 5 months of them working for me. <span style="background-color: white; font-family: Georgia, serif;">I really did have some really awesome times with them in the beginning. At the end of last August, he bought a nice car, and immediately took me through scenic back roads, up to his house, then on a drive up to an area of Pismo Beach called Shell Beach, to sit and watch and hear the ocean. We talked so much that day, and that day, i felt a real bond between me and him begin to develop. We then ate at Five Guys Burgers in Arroyo Grande, which was delicious. The next week, we went back up to Pismo. The next day we ate at the Rock & Roll Diner in Oceano. We also went on other spontaneous outings, to San Luis Obispo, to eat at two Italian delis there, then Santa Barbara, to eat at another Italian deli. We went on alot of outings in that car, which had SiriusXM Radio in it, so we could enjoy my indie rock and alternative rock tunes. I was so happy until the mental and emotional abuse began to happen.</span></div>
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But the signs were always there, always coming, always popping up.</div>
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They took over my middle room, moved their computers in, their clothes, their refrigerator, their couches and beds, their food, and my electric bill went up past $100 for the first time ever....with it being $166 in February. My electric bills before they moved in? Were always well under $60 a month. The highest i had ever paid was $68 when we had a prolonged hot spell that lasted two weeks.
<span style="background-color: white; font-family: Georgia, serif;">My gas bills also went up to $55 and $68 dollars, because they both were always taking showers at my house, and using my washer and dryer almost daily, to wash their clothing. In addition, they would often let their friends take showers and use my bathroom.</span>
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They often asked me for money, because they both always seemed to be dead broke---and always out of gas for their cars. I had to pay for their meals out with me, pay for their cell phones to be turned back on, as well as pay for their gas and food, snacks, and his cigarettes. If i didn’t, i would not get care. No, they never threatened me, i just knew it would happen. And when he was without his ciggs, he was a bear.</div>
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I even paid for some of her medical visits. I have an IOU paper that she and i both signed for $280 of the much more in $$$ that they both took from me these past 10 months. In addition, trying to get him to pay me for the monthly difference on my electric bill each month was like pulling teeth.</div>
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Both of them would often actually block me from coming into the middle room. In addition, they both played games with me: when i needed them to come, they would tell me they were coming, then take their time, then i would have to, on painful hurting back, hips, knees, legs, with the leg lump, struggle to walk back and forth and back and forth, repeatedly to my laundry room to call for them to please come help me, please come sit and talk to me, please just come BE WITH ME.</div>
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Thanksgiving was a beautiful time with his family. Delicious food, and all of them were so sweet to me, including my two brother sister caregivers.</div>
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TThen in December, things got worse. One night at the end of a dialysis treatment, sister decided to rush me out of my chair, and to get my dinner. When i am done at dialysis, i like to wind down and say my goodbyes to my machine, who i have made an imaginary friend out of to cope with my dialysis. I have always made imaginary friends out of roads, highways, and electronics, to cope with being neurodivergent me in a harsh neurotypical world that still views us autistics in a very negative and wrong manner. My machine’s name is Rebecca, and she is the truly genuine sweet angel who gets me through what would otherwise be unbearably scary dialysis treatments.</div>
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Sister chose that night to aggressively pursue me rushing so that she could get her kids their Christmas tree, when she could of done that any other night, but the night she was working for me. Just the prospect of her rushing me to get my dinner, was unbearable enough. She even went so far as to tell me i was causing her kids to all cry.</div>
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She did go there, but never came in, just sat out in her car, arguing with me via Facebook Messenger, which threw me into even more of a bad meltdown right in my dialysis chair! And then she left, without picking me up to take me home! I finally got hers and brother’s mom to come pick me up....<br />
90 whole minutes after my dialysis treatment.</div>
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Then a week before Christmas, we took an outing to Solvang, and again, HE got pissed at me for asking him to make sure my backpack was on my wheelchair before we headed to get Danish sausages and Abelskivvers. He said loudly: “Why do you always have to be so obsessed over that damn bag? It is really quite annoying!” Then when i asked him to get my glasses so i could read the menu, he again got pissed, saying the same thing, then he put my glasses back in my bag in the wrong way that could of broken them.</div>
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Why was i always so scared about having my backpack and glasses with me? Because he once forgot my backpack. It was left sitting in the parking lot of my kidney center one evening when he came to pick me up, and he had to go back to retrieve it for me....so yeah, damn skippy, i was going to be hypervigilant about that backpack from then on!</div>
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We were going to also take a drive to Los Alamos one afternoon, but she decided to take his car, and took it for the entire afternoon, leaving brother and i stranded here at my house with no way to go anywhere. I spent the entire afternoon messaging her over and over to beg her to please bring the car back. She would say she was coming, but then fifteen minutes, then twenty minutes would elapse, then a half hour, then two hours, and she still wasn’t here with the car. Over and over, she played this game with me. Finally, we needed the car to go get my dinner, and she still wouldn’t bring it back to us. She began telling me “Ya!” over and over via Messenger, taunting me, and i told her i did not like being taunted....</div>
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We finally got the car back in time for me to get my dinner, but my dinner was also later than i had wanted to eat.</div>
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When he and i went anywhere, he would always turn the stereo in the car up full blast, without my permission, making me feel like he was trying to drown me out. I had to shut up and put up. Because by that time of the tuna incident, and when he ordered me to go stay at his mom’s so he could pull the carpets out, i <span class="_4yxo _4yxp" style="font-family: inherit; font-style: italic; font-weight: 600;">had</span> seen the signs of his temper. <br />
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<span data-offset-key="1ogvv-0-0" style="font-family: inherit;">A week before Christmas, we had to go up to San Luis Obispo to consult with a cardio-vascular surgeon about the placement of a second fistula, because the one i had had surgically placed in my left arm back in September had failed. He decided suddenly that i smelled, that i had a foul body odor, and that he needed to have his window all the way down all the way up there. This new thing upset me, because here, now i was being ordered to take showers, and i was taking those showers every fucking time i was ordered to do so by him. So why the fuck now should i stink? </span></div>
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<span data-offset-key="41pt9-0-0" style="font-family: inherit;">When he saw me finally in tears in the passenger seat, he relented, and put his window back up. But said i needed to take a shower ever day now. You know why i hate having windows down when riding or driving at freeway speeds? Because the sound makes a roaring sound in my ears, makes my ears pop, and makes it impossible to hear the music on the car stereo. Then he said again, that i had candida on my body and in my hair. A month earlier, he and his sister both convinced me to even shave my head. I did as told, because, according to him, my scalp had candida. Note: Connie worked as my caregiver for 4 years, and never once did she notice candida on my scalp or body.</span></div>
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<span data-offset-key="3odpj-0-0" style="font-family: inherit;">Another note: i do not dislike taking showers, however, i had bad experiences with taking showers and baths growing up, was always made to hurry up, could never enjoy myself in the shower or bathtub. That alone has stuck with me all my life, and now that i have the lymphedema and lymphedema lump, and joint pain, it is physically hard, and tiring to take showers. I do take them though, so that i will not smell and gross others out. But it is hard for me on all levels to shower and bathe.</span></div>
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Then, at Christmas, he got in yet another one of his dark moods as we got to his house. He set me up in the living room, then proceeded to take over the remote on the Amazon Firestick, and watch dark unpleasant videos i didn’t enjoy at all. He would not once let me watch anything i wanted to watch. He also would not serve me any refreshments/appetizers. Then after our dinner, he turned on this awful Holy Roller Hellfire and Damnation Bible thumper that he knew i hated, and when i began melting down, he refused to turn him off. His mom came to my defense and yelled at him to shut that crap off, but he still refused, saying he had the right to watch “Christian” stuff on Christmas. I had to go into the back part of the house to get away from that awful preacher.</div>
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Finally he snapped out of his dark mood, came and apologized, then let me have the remote. But the damage was already done. My Christmas? Ruined.</div>
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A day after Christmas, he totaled his car. His next cruel act was to tell me that he had run over Rebecca in that accident, and had killed her, and i was to never talk to him about her or even mention her name ever again.....that <span class="_4yxo _4yxp" style="font-family: inherit; font-style: italic; font-weight: 600;">really</span> hurt me to my very core, because i still count on Rebecca to get me through each and every single one of my dialysis treatments! He also stopped coming into the dialysis treatment floor with me, which also hurt. Before his car accident, he always told me to say hi to Rebecca, and he often came into the treatment area to spend time with me while i was getting my treatments.</div>
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Then in January, when i went to a mental health center for counseling, he went in with me, making me believe he was going to stay with me during my counseling session, then after 15 minutes into our session, he abruptly left to go take a phone call. He promised he would be right back, but then as my counseling session kept progressing, and there were still no signs of Brother’s return, i got frantic, as the counseling center was about to close. So we called first him. His phone went straight to voice mail. Then we called Sister. Her phone, also went straight to voice mail. So we called my kidney center social worker, who has always gotten me and who has had my back from the get-go, who already knew about Brother and Sister’s previous history with me....finally, we called their mom, and she knew nothing, so we called him again, and he finally picked up. </div>
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When he finally came, he was irate---at ME! For being scared and upset---when i had every fucking right to be pissed and scared. Instead of him realizing he shouldn’t have abandoned me, he lit right into me, in a mean accusing tone of voice, he told me: “Oh, it’s all about you, Melissa, always about you, it’s always got to be about you, you are so selfish!” Finally, when i told him, tearfully, how hurtful and cruel he was treating me, he finally felt bad and apologized. How would he have liked being abandoned, with no way of knowing when or even IF his caregiver was coming back to get him? He apologized. But again, each of these episodes made me even more afraid of him.</div>
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And, things only worsened after that. Sister began getting meaner. Along with him. Many a morning, if i would dare ask them to do a thing the way i wanted it done, i was given attitude, then threats that they were going to leave me, with no breakfast, and no way to get to my dialysis treatments. </div>
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Next came the snow white scrubs he and sister began wearing to my house. Snow white scrubs, top and bottom, just like the old movies of staff at a mental institution. I HATED those scrubs! Along with those, i suddenly became a germ to Brother, and he also started wearing a face mask to work, which put even more walls up between him and i.</div>
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The white scrubs. The face mask. In my own home.</div>
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<span style="background-color: white;">He began yelling at me for taking out a paper towel to wipe my nose when in the car with him, </span><span style="background-color: white; font-family: Georgia, serif;">saying it was germy, and that the particles from that paper towel would transmit my germs to him.</span></div>
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At the same time, if i came into the room to tell them i was depressed and needed to get out, Sister would literally yell at me, and berate me for coming in there and ruining her happy mood. She began yelling at me just like i would hear her yell at her children, harsh mean yelling that made me feel belittled and frightened.</div>
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When i asked Brother to stop cutting my toast all different ways, and cut them in half, diagonally, he got pissed, and told me i needed to just leave them alone and let them do their jobs, that i had no say. He also liked to leave space between the middle of the bread and crust with the butter and jam, which i also hate. He also liked to butter my toast when it got cold so the butter was not melted. I hate that. In addition, my oranges often tasted like his and sister’s cologne and perfume. I hated that too. </div>
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In addition, he wanted me to just not be in the kitchen anymore, because i was right in their way. <span style="background-color: white; font-family: Georgia, serif;">He made me rearrange my kitchen so that it could be convenient for them, and not me anymore.</span></div>
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But just as suddenly as those moods would begin, they would stop, with both Brother and Sister. They would become nice again. Then it would cycle right back to the bad moods again. It was always up and down, up and down. </div>
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In January, was when we we began having meetings with my kidney center social worker. At first, both Brother and Sister seemed to listen. But then as time wore on, they began not listening. These meetings had to happen though. I wanted and needed to make this work, because the alternative would be more possible mean caregivers like the ones i had had in the past, including K from last year. I kept hoping for the best. I kept giving both Brother and Sister the benefit of the doubt. <span style="background-color: white; font-family: Georgia, serif;">Because i foolishly believed they loved me, they just needed to learn to understand and get me.</span> </div>
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Even so, they always told my kidney center SW that i used my autism as a shield, a crutch, and excuse, and that my physical disabilities were not real either.</div>
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He even got irate when i tried to explain that curbs, curbs with bushes, and unstable walking places were a thing. He said to both me and my social worker “I don’t appreciate being told where i can park!”</div>
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<span class="_4yxo _4yxp" style="font-family: inherit; font-style: italic; font-weight: 600;">Excuse me? I am a fall risk!</span></div>
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March came, and still, Brother’s car wasn’t fixed. This presented more stress for me because again, i never knew when Sister would take the only working car and leave brother and i stranded. Even on some dialysis days, she would take the car at the last minute, leaving me worried that she would come too late to get me to my dialysis treatment on time. Worried that i may not even get to dialysis.
Another thing is that whenever brother and sister would take me to medical appointments, they would sit behind me in the exam room and basically not have my back if i was talked down to or talked to rudely or rushed in those appointments.
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<span data-offset-key="4cjfq-0-0" style="font-family: inherit;">At the end of March, he got a white loaner car, and his car was supposedly now finally in the shop, finally being worked on. Also at the end of March, he got in yet another one of his shitty mood with me, which caused my blood pressure to spike to literal stroke level at dialysis, and i was unable to get through that treatment without them having to put a clot busting drug in my catheter. I cried the entire time i was hooked up to the machine (Rebecca) that Saturday. </span></div>
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<span data-offset-key="fngqu-0-0" style="font-family: inherit;">What happened that time? As he drove me to dialysis that morning, he got another bug up his ass, suddenly began changing radio stations on me and not letting me hear the music i was enjoying, saying the lyrics were really negative, and were bothering him. He proceeded to put it on a station that has the very hellfire and damnation type of preaching and type of Christian worship music that he knows causes me to have PTSD flashbacks to my times going to churches where i was hurt and traumatized. I made him turn it off. He then took out his phone and told me “Oh, i know you will looooove thiiiiiis song!” in a tone of voice i found to be chidingly cruel. When i recognized that song as one of the Christian songs that was a PTSD trigger for me, he got full-on belligerent, telling me he was going to listen to whatever he felt like listening to in his car, and i had NO say. I had a screaming meltdown, and that was how he left me, in the lobby of the kidney center, coldly leaving me there, sobbing. It ruined my entire dialysis treatment that day.</span></div>
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<span data-offset-key="6c9ae-0-0" style="font-family: inherit;">A week later, he took me on a trip to Tepusquet, my old home, and he was being all kinds of nice to me that evening.</span></div>
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And then, Sister's moods worsened again in April. In May, a week before my birthday, was the whopper of them all. On Tuesday May 7, neither of them were here. It was getting later and later....my blood sugar was dropping, and i needed to eat breakfast. So i called him. Then texted him. No answer. Then i called her. She did answer, saying “I am in a bad mood, and i am not taking any shit off anyone today.” At 11:12 AM, when they were still not here, i called my kidney center SW frantic and in tears, screaming. Next thing i knew, i heard several loud loooooong horn blasts, and they both came charging angrily into my driveway, yelling at me, from the car, both of them yelling at me, and calling me ridiculous, saying this wasn’t autism, this was something else bad, and i cannot act this way. They both kept up the horrible yelling as my SW was listening, and when he realized i was on the phone with her just having her help to try to calm me down, he literally picked up my phone and hung the phone straight UP on our call. They then proceeded, several times, to threaten to leave me....with no way to get my breakfast, no way to get to my dialysis. </div>
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My SW called me back, and talked to Brother, and then he finally calmed down, and got me my food, and then took me to dialysis. But i was late, and as a result, did not get put on the machine till after 1:00 PM. I was supposed to be there at 12:15 for a 12:30 put on time.</div>
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And that treatment went horribly. I could not calm down at all. The machine, Rebecca, kept alarming non-stop. And my blood pressure was literally at stroke level. They had to put Acti-Vase In my catheter yet again, to make it run so that i could get through my treatment.</div>
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Everytime they would upset me, it would affect my dialysis treatments.</div>
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That night, Brother picked me up, in a soft sweet mood, telling me it would all be okay. That he was not going to do or say anything to upset me anymore, because he hated it when i was upset. But what happened next, was we got home, where greeting me was my spaghetti dinner with so much cheese on top, it was too hard to put a fork in it. <br />
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Already still rattled from that morning’s events, i got upset again. And at first, Brother was willing to fix it for me. Until Sister popped in to start in yelling at me again. She called me ungrateful and selfish, and said that i did not appreciate anything she and Brother did for me. I went into another screaming spell so bad that Brother again lost his temper, and together, they both stood in the doorway to my living room, screaming at me. Telling me again that this wasn’t autism, this was me being an abusive monster. I plugged my ears, pleading with them to just take me to the bus station, so i could leave.....I could not bear to hear their yelling anymore.....</div>
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Then they both left me, in tears, sobbing and shaking. Before i could think, i pushed my entire tray table of food to the floor, and then</div>
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I tried to run away. I took a taxi first, to a friends who was sick, then a Motel 6, but got scared, and came back home. But i still wanted to run away.</div>
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I got Connie to come the next day, and together we talked to Brother. He agreed to have Connie start working for me Mondays and Fridays, and he would still do the rest of the days....no more would his sister be in the picture.</div>
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Things went great until he figured out he would lose some of his income by having Connie come as a second caregiver.</div>
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He still treated me really super great though after that. But he kept trying to turn me against Connie.</div>
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Sister just got even meaner though. So mean, that one day, the week before Father's day, she got in the car, to drive me and brother to his house and would not speak to me at all, and when i would try to talk, she would talk to brother loudly right over me, making it obvious i was not welcome in the car.</div>
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And then on Father’s Day, we went to his house for a BBQ. All went well, until sister’s friend, who i had met before, showed up, and began telling me to stop the stimming i was doing. I was just sitting in the kitchen tapping on my cane. She told me to stop. I tried to explain about my autism and why i stim, and she goes: “Hon, i already know you’re autistic, and know ALL about autism. I am around alot of autistic children. Everyday. We are all alittle autistic, ya know. We all have our issues. We just don’t broadcast it like you.” She got right up in my face, like she was going to hit me.I got pissed and told her off, told her to get out of my face, that she didn’t know me, and then sister came in and began yelling telling toxic friend “Oh, Melissa acts like this all the time! “ then berating me for having my SW call her to try to reason with her for the umpteenth time the week before.<br />
<br />
I had to have brother take me home early from that party.</div>
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Then a meeting followed between me, Brother and his mom, with them again trying to talk me out of having Connie as my secondary caregiver. In that meeting, i saw a whole other side of both Mom and Brother that i found to be unsettling.</div>
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The next day, back to the cath lab i went to try to see why my catheter wasn’t working. Brother was in that same cocky mood all that day too. And it made me sick to my stomach. <span style="background-color: white; font-family: Georgia, serif;">At IHOP that evening, he again berated me for wiping my nose at the table, and for holding my hand over my salad the way i was holding it.</span></div>
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That was Friday June 21. That night, he went out with his friends and left me all alone.</div>
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And then, on Saturday, the 22 of June, he came dressed in dress slacks, dress shirt, and reeking of cologne. He and sister both already knew full well i hate tasting their cologne and perfume on my orange and apple....yet here he was, with full blown cologne on again. Aaaaand, he was in a full-blown bad mood. When i pointed out to him that his cologne would be on my orange, he lit into me, threatening right off the bat he was going to leave. Then he did----finally making good on his and sister’s threats to leave me without my breakfast or any way to get me to dialysis---at all that day.</div>
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When i got my neighbor to help me, Brother flew back into the driveway, sending him home, then yelled at me and left me again as i sobbed, pleading with him to please give me food and take me to dialysis. He got back in his car, telling me coldly: “No worries, you won’t starve to death, you will manage!”</div>
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<span class="_4yxo _4yxp" style="font-family: inherit; font-style: italic; font-weight: 600;">That was a voluntary QUIT. And criminal negligence.</span></div>
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The following is what he wrote about that Saturday---i received this in response to an email i wrote to him because he now keeps trying to submit timecards---for the wrong amounts. Not gonna lie, this thing he wrote was cruel to the core, and it just solidifies why i have the trust issues i have. </div>
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[Trigger warnings for extreme ableism, Othering, body shaming.]</div>
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<span style="background-color: white; font-style: italic;">“I just read up to the part where you try to use autism to justify why you believe it’s ok to be a horrible person to anyone. It’s disgusting how you treat people and for you to be ok with it . Getting upset is a part of LIFE! Not getting your way and throwing a fit about it IS NOT AUTISM ! FYI I was not there for your autism , and people like you who use it to take advantage of the system and use it as a crutch is wrong . I smelt strong of cologne so I wouldn’t have to smell your pungent sour Oder due to you not wanting to bathe and not wanting me to wear a mask . Please don’t write back as I will no longer read your emails due to you thinking it’s ok to still be nasty and hateful.”</span></div>
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These are the same things he would often say to me during the past several months, whenever he was in one of his dark bad moods.</div>
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I called an ambulance to be taken to the hospital so i could dialyze there, and so i could stay away from here, because i was now frightened, because he still had keys to my house. I am glad i did that, because now not only is all of the brother sister team’s abuse well documented with my kidney center social worker, but it is well-documented with Adult Protective Services, the hospital where i went, and my local police department.</div>
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Connie is now back as my caregiver, and the brother-sister team are out of my middle room and life.</div>
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I do intend to see to it that they never get to do this to anymore vulnerable people. I also intend to find a way to spearhead legislation with teeth that will finally hold abusive care providers strictly accountable, and not be able to work in this field ever again.</div>
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Postscript---because of what Brother did by leaving me last Saturday, i almost fell in my driveway. Again, i am a fall risk! I am also a borderline Type 2 diabetic, which means i need to eat on time. In addition, missing even a single dialysis treatment can also set into motion a chain of events that can shorten my life, and it did set in motion that chain of events. </div>
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I was not able to dialyze at the hospital that last Saturday. I went into the kidney center and got 3 hours of dialysis that following Monday, but then when i came back for my Tuesday treatment, my catheter stopped working, and i had to miss yet another dialysis treatment to go to the cath lab---again---to get another new chest catheter placed in my chest. I am now dialyzing great again.</div>
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But they took my artwork from me. They took several of the drawers out of my desk. They took my old vacuum cleaner that was my grandmother’s that still works after 40 plus years. They have taken from me so many of my things that i need and want back. Most of all, they robbed me of what could have been a great time of real joy in this past season of my existence.</div>
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And i am not going to forget this. <br />
<br />
<span data-offset-key="qbov-0-1" style="background-color: white; font-family: Georgia, serif; font-style: italic; font-weight: bold;"><span data-text="true" style="font-family: inherit;">A new update and notes to the above, written Wednesday, September 4, 2019:</span></span><span data-offset-key="qbov-0-2" style="background-color: white; font-family: Georgia, serif;"><span data-text="true" style="font-family: inherit;">
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<span data-offset-key="qbov-0-2" style="background-color: white; font-family: Georgia, serif;"><span data-text="true" style="font-family: inherit;"><br /></span></span></div>
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<span data-offset-key="qbov-0-2" style="background-color: white; font-family: Georgia, serif;"><span data-text="true" style="font-family: inherit;">Because of the stress i was under during the time the brother and sister were my caregivers, i was never able to follow up to get my second fistula, nor was i able to follow up on getting the first fistula surgically moved up closer to the surface of my arm, so that it would start working. FYI, a fistula is an arm access that is surgically built in one’s upper or lower arm using a vein and artery to make up the fistula, so that the person can get better quality dialysis. It is meant to be a more permanent access port for dialysis, and is much more reliable and poses less risk of infection, than a chest catheter does. But at this time, i still am waiting to get a new appointment with another vascular surgeon, because i need to get this taken care of. This time i am going to go for an AV graft. That is an artificial graft that is placed in the arm, and is also as reliable as the fistula. Unlike the fistula, which takes anywhere from one to three months for it to mature before it can be used, an AV graft can be used for dialysis access within 48 hours of it implantation in the arm.</span></span></div>
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<span data-offset-key="qbov-0-2" style="background-color: white; font-family: Georgia, serif;"><span data-text="true" style="font-family: inherit;"><br /></span></span></div>
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<span data-offset-key="qbov-0-2" style="background-color: white; font-family: Georgia, serif;"><span data-text="true" style="font-family: inherit;">In the months when the stress began to mount with the brother and sister, it began to affect every single one of my dialysis treatments. My blood pressure would routinely spike wildly up and down, and was often at stroke level, my machine would alarm constantly, and once about every two weeks they had to put the Acti-Vase in my catheter in order for my treatments to proceed. Then it progressed to me making weekly visits to the hospital cath lab to have my chest cath replaced. They finally had to put a balloon stent in the artery or vein?---I don’t remember which--- and have yet another new chest cath placed in my chest in the week after the brother abandoned me.</span></span></div>
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<span data-offset-key="qbov-0-2" style="background-color: white; font-family: Georgia, serif;"><span data-text="true" style="font-family: inherit;"><div class="_2cuy _3dgx" data-block="true" data-editor="1u4v5" data-offset-key="e51ku-0-0" style="box-sizing: border-box; margin: 0px auto 28px; overflow-wrap: break-word; width: 700px;">
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<span data-offset-key="e51ku-0-0" style="font-family: inherit;">They did also finally return my art, my desk drawers, my white vacuum, and two of the three folding chairs they had taken from me. But i had to have my locks changed on my post office box. Because he kept the key. And i am slowly working to replace all of the other gazillion things they took---stole---from me.</span></div>
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<span data-offset-key="bv43g-0-0" style="font-family: inherit;">But i am not the same. </span></div>
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<span data-offset-key="f8raa-0-0" style="font-family: inherit;">I love that Connie is back. We are doing better than ever. She cooks for me almost every night---delicious meals of enchiladas, Mexican rice, meatloaf, ribs, etc. She makes my breakfasts the way i ask for them to be. She plays my music in her car, on her Pandora Radio. We go out to eat often. We laugh. We talk. She has no need to take over my middle room or my house. Or to stay away from me so that i am left lonely and all alone each afternoon. Like the brother and sister always did to me. She is never late getting to me, and picking me up at dialysis. She comes right into the lobby to sit and wait for me to get done at dialysis, so that they all know she is there waiting for me.</span></div>
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<span data-offset-key="f8raa-0-0" style="font-family: inherit;"><div class="_2cuy _3dgx" data-block="true" data-editor="1u4v5" data-offset-key="2apb1-0-0" style="box-sizing: border-box; margin: 0px auto 28px; overflow-wrap: break-word; width: 700px;">
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<span data-offset-key="2apb1-0-0" style="font-family: inherit;"><span data-text="true" style="font-family: inherit;">The brother and sister were always out in the middle room, leaving me all alone every afternoon. I hated that. I SO hated that! They would often come late to my house, and were often late to pick me up at dialysis,as much as 90 minutes late at times. And to top it off, they would often not even bother to come into let the techs know they were there. The techs always had to go out in the parking lot to hunt for them. The brother and sister always seemed to make it a daily game with me as to how late they were going to be to show up for me, and when they would be here for me. It made for unbearable daily stress, and made me not want to even wake up most mornings.</span></span></div>
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<span data-offset-key="i8uj-0-0" style="font-family: inherit;"><span data-text="true" style="font-family: inherit;">I wanted to stop my dialysis and die. I felt no hope. I felt only thick blackness and despair so deep when they were in my life, that it sucked me dry. It took that final act of cruelty, him driving off and leaving me with no breakfast and no way for me to get to dialysis--to open my eyes that they truly did not care about me---they were in it only for what they could gain materially and financially. And because i believe, i truly believe in my heart of hearts that they are cruel cold-hearted sadistic mean monsters.</span></span></div>
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<span data-offset-key="3e8ao-0-0" style="font-family: inherit;"><span data-text="true" style="font-family: inherit;">No. I am not the same. I am plagued by almost nightly nightmares of the brother and sister. Sometimes the dreams are where they are nice and apologetic. But many of my other dreams are of them being mean and yelling at me over and over and over again...and me trying to escape their awful yelling and meanness. Thankfully, i can sometimes wake myself up before the dreams go any further. But they happen, and i hate these dreams.</span></span></div>
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<span data-offset-key="2cg5o-0-0" style="font-family: inherit;"><span data-text="true" style="font-family: inherit;">And my trust issues are even more pronounced now than they ever were before. I am afraid of getting any other caregivers for fear this could happen all over again.</span></span></div>
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<span data-offset-key="2cg5o-0-0" style="font-family: inherit;"><span data-text="true" style="font-family: inherit;"><div class="_2cuy _3dgx" data-block="true" data-editor="1u4v5" data-offset-key="kqaf-0-0" style="box-sizing: border-box; margin: 0px auto 28px; overflow-wrap: break-word; width: 700px;">
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<span data-offset-key="kqaf-0-0" style="font-family: inherit;"><span data-text="true" style="font-family: inherit;">And i hate the memories that just won’t go away. Both the good and the bad memories i had of them, that began to outnumber the good ones.</span></span></div>
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<span data-offset-key="9v2gs-0-0" style="font-family: inherit;"><span data-text="true" style="font-family: inherit;">The signs were all there. But fear and wanting to believe they were good people who were just uneducated, who just needed to learn, kept me from firing them all the times that i could of fired them.</span></span></div>
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<span data-offset-key="8ri9q-0-0" style="font-family: inherit;"><span data-text="true" style="font-family: inherit;">I will never forget the hell they put me through. Yes. It has changed me forever.</span></span></div>
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Melissahttp://www.blogger.com/profile/17458872329425009616noreply@blogger.com0tag:blogger.com,1999:blog-8942863686705986301.post-34183672100912438852019-06-30T19:12:00.000-07:002019-06-30T19:12:02.399-07:00Yes, This Needs To Be Said: A Story Of More Abuse<span style="background-color: white; color: #1c1e21; font-family: Georgia, serif; font-size: 17px; white-space: pre-wrap;">[TW/CW: Caregiver abuse, two brief mentions of sex offenders to illustrate the comparison to that as a means of having a similar registry to identify caregivers who abuse, deliberate cruel ableism, caregivers Othering a multiply disabled person, caregivers playing on my vulnerabilities and fears, willful and deliberate caregiver neglect, mental, emotional, psychological, and financial and physical abuse, the withholding of vital medical care, and the gaslighting of ME.]</span><br />
<span style="background-color: white; color: #1c1e21; font-family: Georgia, serif; font-size: 17px; white-space: pre-wrap;">---</span><br />
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And no, i will not delete this post, because these individuals in the following story have subjected me to holy hell for the past 9 plus months, <span class="_4yxo _4yxp" style="font-family: inherit; font-style: italic; font-weight: 600;">and reported documented truth is not</span> <span class="_4yxo _4yxp" style="font-family: inherit; font-style: italic; font-weight: 600;">slander. </span>Because caregivers who abuse need to be called out, publicly shamed, and held to the strictest account possible. Not only that, caregivers who abuse the vulnerable people they are charged to care for, actually need to be treated just as sex offenders do, and be placed on a national registry, then banned from ever being able to ever be care providers ever again.</div>
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Yes, this post needs to go VIRAL. So share this WIDELY, PLEASE.</div>
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And yes this is a long post.</div>
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Having intestinal upset this fine early morning, which i know is due to the state of pure anguish that my now ex caregiver S#$%@ has left me in.</div>
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I slept for several hours, but now am sick.</div>
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Btw, when i do sleep, i have been having nothing but horrible frightening NIGHTMARES about S#$%@ and his sister, who were my caregivers from July of last year until Friday.</div>
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This morning, i am utterly sick to think that a human being who professes to love and care so DEEPLY about my health and well being, actually got in his car and BAILED on me on Saturday, June 22, 2019, leaving me with NO BREAKFAST, AND NO WAY TO GET TO MY SATURDAY DIALYSIS APPOINTMENT.</div>
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<div class="_2cuy _3dgx _2vxa" style="box-sizing: border-box; direction: ltr; margin: 0px auto 28px; overflow-wrap: break-word; width: 700px;">
I had to actually miss a dialysis treatment due to his cold-blooded cruelty. For the first time EVER. Before Saturday, i had never missed a single one of my dialysis treatments! Not a single one!</div>
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To think that he deliberately drove off, while i, crying and sobbing hysterically, plead with him to feed me, and get me to my dialysis, while telling me cold heartedly, "Don't worry, you won't starve to death, you will manage", as he got into his car and drove off, he needs to be called out and publicly outed and shamed by any of my online friends who have the spoons to do so, because this was serious criminal endangerment that he elected to put me in on Saturday. It presented a serious risk to my health.</div>
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In trying to get my next door neighbors to help me, and they were going to help me, but then got afraid to answer their door to me, because S#$%@ drove back in, sending them away, making them think that he was going to help me after all, instead, after my neighbor went back to his house, S#$%@ left, and drove OFF on me, abandoning me, a sick 59 Autistic adult with end stage renal (kidney) failure, when he knows that i NEED to keep all dialysis treatments---or i will DIE.</div>
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How did this all start on Saturday? Because another friend had finally been able to talk to him and bluntly called him and his sister out on their past nine plus months of abuse. So, he was already angry and in a bad cocky mood. Because, on Saturday, he got to my house wearing so much cologne that i knew i would taste it on my orange that he was peeling. (A something he already knew would upset me, as i had asked him several times before not to peel and section my orange with cologne on his hands. I have asked the same of his sister as well, when she worked for me.) I only asked that he wash his hands so that i would not have to taste his cologne scent on my food. His reaction was to get highly pissed, and a verbal argument ensued, where he kept threatening to leave, telling me he couldn’t take this anymore, and then he did leave. I was going to get my next door neighbor to help me, but when S#$%@ came back, making me think he was going to help me, and then left again, and i went back to that neighbor, they were now afraid to answer their door to me. In addition, as S#$%@ got in his car to drive away, i was sobbing, pleading with him to please feed me, please don’t let me go without my dialysis, and he laughed at me telling me not to worry, that i would not starve to death. That i could manage.</div>
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I almost fell while walking on my way back to my house. Please let that also sink in. That i almost fell due to S#$%@'s deliberate and willful negligence. Yes, i am a fall risk due to my limited mobility.</div>
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Some of you friend requested S#$%@ on Facebook and messaged him in the hopes he would accept so that he could learn about me, and why his continued ableistic cruelty was damaging me and why it could not go on.</div>
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I have since learned that he told one of my friends who tried to reach out to him to explain about my C-PTSD and why my meltdowns happen and how to handle it when i have a meltdown, that what they wrote was bullshit, that he had an autistic friend, who was nothing like me. Sounds so much like the autism martyr parents, hmmmm?</div>
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He sadly ignored all of your (you, my friends’) attempts to reach out to him to educate him, except for my one friend above. Shortly before he bailed on me on Saturday, i found out he had posted mean comments on another friends’ comment thread. </div>
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Over the course of these past nine months, i had over a dozen meetings with him and my kidney center social worker, some meeting where his sister also my caregiver, came, where my social worker and i both made repeated attempts to try to get them to understand my autism and meltdowns and sensory issues/triggers----but those meetings did no good. Those meetings were hard on me, because neither he nor his sister got what my social worker and i kept trying to explain to them. Both S#$%@ and his sister seemed hell bent on misunderstanding me and treating me like a naughty child all the time......and this put me through literal mental hell and trauma, which has not helped my physical health one bit.</div>
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Yes, i have spent these past 9 months being mentally, emotionally, and financially ABUSED, MUZZLED, OPPRESSED, AND SILENCED by him and his sister. They both literally charmed me, then took over my empty middle room, moved into my middle room, took over me, and my entire home. I lost all control, and the will to even live anymore. I began to feel safe only when i was at dialysis, where everyone there loves and accepts me! And sheer dread when i knew they were picking me up from dialysis to take me back to what i began to feel as a hellhole, instead of my home. I dreaded it because i began to feel unsafe---in my own home.</div>
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Where i used to be able to pay my bills, now each and every single month i can barely make ends meet, and have had to resort to posting several Facebook fundraisers in order to get through the financial raping that has occured at the hands of this caregiver and his sister.</div>
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They basically would routinely ask to borrow money, but never repay me. They would tell me they had no money to gas up their cars, so i would have to shell out for their gas, or face them not coming, and not getting me to dialysis and all of my shopping and errands. In addition, i had to pay every month for their phone service, or not be able to get them on the phone or via Messenger and text message.</div>
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I had fun times with them---alot of fun times. We went places, and i would often hang out with them and their friends in the middle room. But those fun times always came at a cost and punishment: <br />*them always being late to get to me, and when i would try to reach them, their phones would die, going straight to voice mail, resulting in me having full blown panic attacks and meltdowns, <br />*several times me being late to medical appointments, as well as dialysis, <br />*them being late, sometimes VERY late to pick me up from dialysis. <br />*Me actually getting left at a mental health counseling appointment (more on that later).<br />*And finally, me being denied breakfast, and finally having to miss my first dialysis treatment ever, on Saturday.</div>
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Below describes much of the hell i was subjected to.</div>
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In September of last year, was when i first saw signs of both their moods. (Their lateness was always a problem though from the start.) Firstly, i was made to go stay at his mom’s so he could rip all of the carpets out of my living room and bedroom, because the carpets were affecting his asthma. If i did not agree to this, he was going to walk on me (quit). After a week at his house, he approached me one morning with a dark look on his face and ordered me to take a shower, where, as we were getting ready, he first laid into me for asking him to wipe me before i got into the shower, implying i could do that myself, which i CANNOT, because it hurts my shoulders and arms to reach to do that, then because i needed to have a towel on my transfer bench, and the floor of the tub, so i would not be cold, and slip in the tub, he told me “Why can’t you take showers like a normal person?”, and if i did not shower, he would quit, and i would have to find another care provider. I was having a meltdown, and he kept escalating it, accusing me of not caring about myself. I have always been hesitant to take showers because they are physically hard for me and because of past caregivers, and bad family experiences when i would bathe/shower...specifically, me always being rushed through my baths and showers, and never allowed to enjoy my baths and showers...and he seemed hell-bent on making that shower an as unpleasant as possible experience for me. After he had me in full on tears, pleading my case to him, he finally grew his heart back, and we ended up having an actually pleasant shower.</div>
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Even so, i can never forget that first shower experience with S#$%@.</div>
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And then, a few days later, he got mad at me again for asking him to please re-do my food better so i could eat it, another huge sensory issue, calling me annoying, and what happened was me spending an entire night and set of spoons, going through my Facebook memes to educate him on my autism.</div>
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We got along better after that. After three weeks at his house, i finally came home---to canary yellow paint slapped all over my living room walls, and my entire house all rearranged. My computer speakers no longer worked, so he had to give me a pair of his computer speakers. In addition, my TV sound bar would not work, and we both played hell trying to get it to work again, which, thank God, it did, but i told him to not play with that ever again.</div>
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In addition, i no longer had my Living Bible, a huge plastic box of gel pens, several adult coloring books, and a whole bunch of other things, were now all gone.</div>
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My Thanksgiving at his house was awesomely beautiful though. Delicious food, and everyone there were so sweet to me. Including S#$%@.</div>
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But then in December and at Christmas, he, and his sister, got in yet more bad moods with me. During a trip to Solvang, he got impatient and angry with me when i asked him to not forget to put my backpack on my wheelchair, and then when i needed my glasses to read the restaurant menu. </div>
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One night, Sister literally tried to rush me at dialysis so that she could get her kids a Christmas tree, when she could of done that any other time, except for her work hours with me. She accused me of making all four of her kids cry. I tried to get S#$%@ to pick me up. Their mother came a full hour later to pick me up from dialysis.</div>
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On another day, she began telling me “Ya” over and over in Messenger, after telling me she was on her way, and never coming, when she had taken S#$%@’s car, and left he and i with no way to go anywhere, obviously making fun of the state of distress i was in. S#$%@ and i had planned a recreational outing for us that day, and her taking his car ruined that, and her response was to “Ya” me to death over it, making blatant FUN of me!</div>
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At Christmas, S#$%@ got in another dark mood when we got to his house for another family dinner---which completely ruined my Christmas this year. He took control of the Fire stick TV remote and began watching a bunch of really dark negative stuff that i hated watching. He wouldn’t let me watch anything i wanted to watch. I sat there clearly uncomfortable, getting agitated. He also was not that attentive to my needs when we first got there. He never got up from the couch to get me any refreshments at all. He did serve my dinner plate though. Then after dinner, he began playing a Bible thumper on YouTube who prays for people in a very harsh judegmental manner, his voice a sinister gravely monotone that i find to be more demonic than anything, and this really triggered me. He played it even though he knew this man upset me when i had to hear him before, out in the middle room of my house. When i tearfully asked that he please turn it off, he refused, getting downright nasty with me. I had a meltdown, and had to leave the room. His mom came to my defense, and he finally got nice again, apologizing to me....letting me have the remote. I put on videos of New York City.<br /><br />And then in January, he actually left me at a mental health counseling appointment, leaving me to believe i would be stranded there. He basically came in with me, then excused himself to go take a phone call, promising me he would be right back in, then never came back. After my session was over, my counselor and i tried to reach both him and his sister, but both their phones went straight to voice mail. I had the counselor then call his mom, and then my kidney center social worker, who has been in my corner from the get-go, and she finally reached the sister, who got S#$%@ to finally come get me. When he finally did come to pick me up, the center was getting ready to close, and instead of him apologizing to me for leaving me stranded, he yelled at me and scolded me, telling me “It’s always about you, Melissa, always about you, you are so selfish!” and i had another meltdown. He finally apologized, realizing what he had done.</div>
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Things have only gotten worse since then....unbearably worse.....with both of them....more numerous daily episodes of their now classic showing up late behavior, the now classic phones going straight to voice mail when i try to reach them to find out when they’re coming...then suddenly they come back to life and message me to say they’re down street, at the stoplight, on our way, etc.,...me often getting my breakfast a whole hour to two hours late.....daily episodes of them switching days on me, and switching plans and changing things abruptly,...daily, upon daily, repeated episodes upon daily repeated episodes of me being in here, in my living room, all alone after they give me breakfast, all alone for whole entire afternoons, with them out in the room with their friends coming and going into the room to visit them all afternoon long, and me---just alone. If i needed them, i would have to get up and literally walk to the back of my house to yell for them. On legs, hips, and knees that always hurt. (And i still have the leg lump). Otherwise they would not hear me call for them, as they always had music or videos playing. I would have to call for them at the top of the steps leading from my laundry room through a breezeway, to that room that they had turned into an office/hangout/party room for themselves. Often they would even block the door leading into their room so that i could not go in there to hang out with them, which i often had to do in order to get any attention from them, again on knees, legs, and hips and a heavy leg lump that always hurt.....</div>
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Sometimes they would take their time to come to me. One time, they would not come, and i kept going back there, over and over again. pleading with them to please pay attention to me, and they would not come to me until after i was screaming and in tears.</div>
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There were the afternoons the sister would bring me treats like ice cream pops, and cool candy, even hits of her cbd pens. But most afternoons i was here in my living room all alone with no one to talk to.</div>
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And then in April, she began to also get in even more and more ugly bad moods and pay even less attention to me. She began yelling at me more and more. More and more scolding me. More and more judging me. She stopped thanking me for all of the nice things i did for her. She just stopped being nice. Then in May, a week before my birthday, one morning, she and her brother both came really late, together, with him laying on their car horn as they flew into my driveway,----- on a dialysis day,----- with me in here at my computer, in full on screaming meltdown mode on the phone with my kidney center social worker, and they both lay straight into me, them both yelling right at me, charging into my living room, calling me ridiculous, with even him going so far as to actually pick my desk phone up and hang up on the call i was on with my kidney center social worker----who was on the phone with me, trying to calm me down. I kept screaming, and they only reacted by threatening to leave me, with no breakfast, and no way for me to get to dialysis.</div>
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He calmed down, and fixed my breakfast, but, yeah, got me---late---to dialysis, where, because i was still highly riled up, my dialysis machine kept alarming, and they had to put Acti-vase in my catheter to get it to work. In addition that day, my blood pressure was at literal stroke level.</div>
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That evening, after i had another meltdown because of the way my spaghetti was plated up with way overkill on melted cheese on the top of it, at first, S#$%@ was going to fix it, but then his sister came in, and they both yelled at me yet again with their usual harsh ableistic judgments: “Oh, here you are, Melissa being ungrateful, using your autism as an excuse, you are selfish this, bad that, a burden, a behavior, a tantrum, you don’t appreciate us and what all we do for you, and we even think you are lying about your disabilities....” Then they both left. In total and complete frustration, i threw the entire dinner on the floor, because as usual i was being unheard, as usual i had no say in my care, no rights, it was their way or the highway, as usual....and i just could not do this anymore.....i tried to run away.....and came back later, having to heat canned raviolis up in the microwave.....</div>
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It got better with S#$%@ after that, in fact, unusually better with him, because i had Connie come talk to him....and it calmed him down and he even told both my friend Connie and i he now gets me and that these upsets are not going to happen anymore. After that, he even had talks with my kidney center social worker that gave her hope too---but even when the sister and i made up a week later after that awful day and night, things were never the same between her and i.....</div>
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Because of that night, i had Connie come in as a third caregiver, thinking that would help....it did until S#$%@ realized he would lose money by me having Connie as a secondary caregiver, plus Connie came right out and called him out on the way i’ve been treated by him and sister these past 9 month.....and then more hell happened on Father’s Day with the sister and the sister’s mean friend, when S#$%@ took me to his house for a Father’s Day BBQ. When the mean friend of the sister’s told me to stop the stimming i was doing, sister came in yelling at me for standing up for myself to her mean witch friend.....and now? He has finally turned on me..... </div>
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I have both of these ex caregivers now blocked, as well as their just as cruel wicked witch of the West den mother, as well as HIS evil girlfriend and partner in crime.</div>
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The reason i am writing so passionately this morning, is because i am rage pissed, deeply hurting mentally, and i do not feel well physically either this morning, i am still having lower abdominal cramping, still feel physically sick.</div>
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I am CRUSHED that this young man has done this to me, left me when i, a borderline Type 2 diabetic, needed my breakfast, and to get to a vital medical treatment that is keeping me alive.</div>
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S#$%@ and his sister, when they were my caregivers, would routinely play games with me when i would get upset at them, cruel mental games, were always late getting to me, they always yelled and screamed at me, and several times before he finally did leave me on Saturday, threatened to leave me without food and a way to get to dialysis. Yes, there were several other times where i was threatened with no breakfast and no way to get to dialysis.</div>
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They both knew that i am all alone, with no family support. They preyed on all of my fears and vulnerabilities. All the while telling me over and over and over again how much they loved me.</div>
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On Saturday, S#$%@ finally made good on their threat to leave me hungry and without my dialysis.</div>
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ALL of this is well-documented by my social worker at my kidney center, by my local hospital where i had to go to try to get dialysis there on Saturday after S#$%@ left me, and by the local police, after the kind hospital social worker who saw me while i was at the ER, told me i needed to make a police report on what S#$%@ did to me.</div>
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I have not gotten a dialysis treatment since Thursday. They were going to admit me Saturday so that i could get dialyzed, but they did labs and decided against it because those labs came back normal. I am going to go back in this morning to get more labs done, to make sure i can wait till tomorrow my normal time to get dialyzed. If not, i will have to get dialyzed today.</div>
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Again, this post needs to go viral, to illustrate that caregiver abuse of vulnerable disabled folx, is a real and pervasive and serious evil occurance that needs to be stopped.</div>
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Abusive caregivers need to be placed on a national registry, just as sex offenders are, and need to be banned from ever caring for and abusing anymore of us.</div>
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As for me, this is why i have the deep trust issues i have. Exactly why. Exactly why i now have the C-PTSD i now have. Because sadly, i have had a long string of these kind of abusive caregivers, from 2012 on when i first needed caregivers.</div>
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I know this was long. It needed to be. Because these stories need to be told. Shouted from the rooftops.</div>
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Caregiver abuse is a REAL and SERIOUS problem. And it needs to be stopped full stop. No more. We disableds are human beings. And we matter.</div>
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Thank you.</div>
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[Above blog is a more detailed account of what i have had to endure for over nine months, in my own home. If you read my Timeline post, please read this, and share it widely.]</div>
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Update on Thursday June 27, 2019: I did go in for dialysis for a three hour run Monday, which was successful. On Tuesday, i tried to do my regular four hour treatment, but my catheter would not pull. I was only able to get one hour and forty five minutes of my Tuesday treatment, and no dialysis today. Instead, i am going into the cath lab to have yet another new catheter put in my chest, so i can hopefully get back on schedule with my dialysis again.</div>
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Connie is once again my caregiver.</div>
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In addition, S#$%@ has moved all of his computers and personal things out of the middle room. He told me he would have everything out by this past Sunday at noon, but as of Wednesday, he still had desks, two sofas (he took the cushions from them though), two vinyl chairs (of which he also took the seats from), a red Coca Cola refrigerator, and my desk, with many of its drawers also missing and gone. In addition, i had three folding chairs that are mine that he also stole from me.</div>
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I also asked for him to return an art portfolio full of felt tip marker drawing i spent hours upon hour drawing in the 80’s and 90’s, that he still has, at his house, and has yet to give back to me.</div>
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Between him and his sister, much of my possessions are i am afraid, forever gone. My emotions are forever ripped apart by those two.</div>
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I trusted them to care, to love me and to really care, and i instead got my entire being forever broken.</div>
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<span style="background-color: white; color: #1c1e21; font-family: Georgia, serif; font-size: 17px; white-space: pre-wrap;"><br /></span>Melissahttp://www.blogger.com/profile/17458872329425009616noreply@blogger.com0tag:blogger.com,1999:blog-8942863686705986301.post-43748563458879250482019-05-10T09:07:00.002-07:002019-05-10T09:07:13.599-07:00When You Fail To Understand<div class="_4lmi" style="background-color: white; color: #1c1e21; font-family: Helvetica, Arial, sans-serif; font-size: 12px; margin: 0px auto; position: relative;">
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When you fail to understand that my Autism does<br />very much define me<br />When you do a something without realizing it can be a trigger for me<br />When you do things without asking me first<br />Change things on me without my consent<br />Or change my things around without asking me first<br />When you yell at me, scold me, <br />talk over me and then assume and judge me wrongly<br />then leave it all unresolved for me<br />No closure, just walk out on me<br />I am up all night crying<br />thinking the worst <br />and wanting to literally run away from my own home<br />At the same time i am begging for God to take me<br />I am not the monster you think i am<br />I do not act and react to manipulate and control other people<br />I have alot of sensory issues, many are inherent to my autism<br />But many are and have been brought on by a lifetime of trauma after trauma<br />I act and react because i am triggered<br />because my brain is wired differently than yours<br />Please, for the love of God, understand that<br />When upset and in distress, i am going to write about it<br />To educate you and others<br />And to help me to process through my time of upset and distress<br />It is NOT to slam anyone personally<br />It is not just because i want to hate <br />and put that someone or <br />someones on blast<br />I just have to write<br />Because i need to be heard<br />I need the world and those i care so deeply about <br />that still seems hell bent on misunderstanding me and making <br />us autistics out<br />to be the villains we know we are not, <br />then silencing and trying to fix, cure and erase us<br />To hear my words that come from my very heart and soul<br />THAT, my friends, is why i write<br />The things i am not<br />I am not just a “negative person”<br />I do not hate myself<br />I am the way i am due to a lifetime <br />of my autism being misunderstood and judged way too harshly<br />And me being rejected by others over<br />and over and over again because of my autism<br /> I am not ungrateful<br />I am not selfish<br />I am not rude<br />I am not bad <br />I am not a terrible horrible awful this and that <br />I AM AUTISTIC AND I AM DOING THE UTMOST BEST THAT I CAN<br />WITH THE LIMITED TOOLS I HAVE IN MY TOOLBOX. </div>
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Melissahttp://www.blogger.com/profile/17458872329425009616noreply@blogger.com0tag:blogger.com,1999:blog-8942863686705986301.post-41388934804286280432019-05-09T22:08:00.001-07:002019-05-09T22:08:13.121-07:00An Open Letter From A Friend<div style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; line-height: 1.71429; margin-bottom: 1.71429rem; padding: 0px; vertical-align: baseline;">
The following is from an anonymous friend who wrote this in response to some struggles i’ve been having for awhile now. I am posting this here, for educational purposes only, to help readers gain knowledge and understanding of what being a real friend, support person, etc., to an autistic person is….how to really be here for us, how to show UP for us, how to really have our backs.<br />—<br />I hope this will help any of you reading this who also struggles with friendships, and maintaining friendships because a non-autistic friend does not understand. I still to this day struggle in my relationships with all people, both autistic and non-autistic, because of so many sensory issues and a lifetime of trauma i sadly, have yet to heal from.<br />—<br />It doesn’t make us bad people. It’s because so many people today still don’t get it that autism and autistic people are not a behavior issue to be scolded and fixed and cured. Autism is a real and valid disability.<br />—<br />I urge you to read this in a quiet room, with your entire attention, and then pass this on widely, because on behalf of myself, an Autistic adult, all of my fellow autistic friends, and all autistics in this world, it is time for the non-autistic world to stop seeing us as the tragedies and burdens and monsters that we are not.</div>
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Hey *******,<br />—<br />I am an anonymous friend of Melissa’s and wanted to reach out to talk to you. She says that you are wanting to learn more about autism and how to support an autistic person like Melissa.<br />—<br />Like Melissa, I am also autistic and I think I can help you to understand a little bit more if you are willing to listen.<br />—<br />First, I’d like to say that as her friend, it’s really important to listen to Melissa even if you don’t understand why she might have certain reactions or responses. The reason for the way an autistic person is acting is not something that can be easily explained to people who do not experience the world like we do. So, when an autistic person is reacting or behaving differently than you would, remember that’s because you are not experiencing the same things in the same way as we are. I will talk a little more about this but just wanted to say first that there might be times when you will never understand why Melissa wants things a certain way or does things a certain way, but that doesn’t really matter because she still gets the final say in her life and in her home. Melissa did say that you wanted to learn more and thinks that you are a person who really wants to help support her in a respectful way, and she wanted to try to help you understand her better. To me, that says that she thinks highly of you to devote the energy and time into helping you to understand, so I want to help her make that happen!<br />—<br />Autistic people experience the world differently in many ways. The primary ways that we are different from non autistic people are in the areas of communication, sensory processing and movement.<br />—<br />Communication:<br />—<br />In general, autistic people like Melissa and I might struggle a lot with what is called expressive language. Even autistics who talk a lot tend to have a hard time with identifying and expressing emotions. This is called alexithymia. It means that some emotions are hard for us to name when we are having them and there is a disconnect between the things we are feeling and how it affects our bodies and sometimes how that looks to other people. It makes it very hard to tell other people what we are feeling when we can’t figure it out ourselves. <em style="border: 0px; margin: 0px; padding: 0px; vertical-align: baseline;"><strong style="border: 0px; margin: 0px; padding: 0px; vertical-align: baseline;">But this is not a person being difficult or manipulative just to upset you, this is how our brains are wired.</strong> </em>Some ways that you might see this when interacting with Melissa is when she might seem to get mad out of nowhere. Well, it’s not out of nowhere. I am often accused of doing this when in reality there are a million little things that have been upsetting or distressing me and I don’t realize and name it in real time and can’t express it to people around me. Autistic people also tend to be very blunt and communicate in facts. Some people see this as rude, but to an autistic person, not saying what you mean is pretty rude too. For example, I don’t think Melissa would ever bullshit anyone and pretend something did not bother her when it did. This is something that non-autistic people do and it’s baffling. <em style="border: 0px; margin: 0px; padding: 0px; vertical-align: baseline;"><strong style="border: 0px; margin: 0px; padding: 0px; vertical-align: baseline;">So, as you can see, the way you communicate as a non-autistic person can be just as confusing to us as our ways of communicating are to you.</strong> </em><br />—<br />Alexithymia combined with the sensory regulation issues that all autistic people experience can be quite upsetting and overwhelming. It’s important to note that what you are seeing and experiencing when an autistic person is struggling in this way is not even a fraction of what they are feeling internally.<br />—<br />As Melissa’s friend of many years I know that she sometimes uses images she creates on her computer, writing or even pictures she shares on Facebook to express how she is feeling sometimes. This is something that a lot of autistic people find easier than talking. So, Melissa communicates just fine in autistic ways, but what she needs from the non-autistic people around her is to know that there will sometimes be conflicts in communication since we have such different styles and ways of expressing things than non-autistic people. The key is to respect each other’s way of communicating and interacting with each other.<br />—<br />Sensory Processing<br />—<br />Autistic people all process sensory input in vastly different ways than non-autistic people do. Some people are sensory defensive and some are sensory seeking. Some are both at the same time! I know that Melissa has a terrible time with the loud noises from the cars in her neighborhood. What might seem like an annoying sound to you is PAIN to her ears, and probably would be to mine too. Melissa can probably explain better what her particular sensory issues are, because not all autistic people are the same in that way. A lot of times, there is nothing that can be done about the sensory things that hurt us. Because a lot of that is up to other people….like the car shop people, who are clearly not interested in that kind of thing. So, that is something that Melissa has to deal with on an almost daily basis and causes her intense and overwhelming pain. Sometimes, we can make workarounds and accommodations like earplugs or headphones….but sometimes those create a whole other sensory hell for us too. I know that I can’t wear earplugs but I also can’t handle lots of noise. So, it can be a very hostile world to navigate at times.<br />—<br />So, it’s important to understand that our experiences are probably 100% different from anything you have ever known<em style="border: 0px; margin: 0px; padding: 0px; vertical-align: baseline;"><strong style="border: 0px; margin: 0px; padding: 0px; vertical-align: baseline;">, but that doesn’t make them less true or valid.</strong></em> Sometimes, when I am overwhelmed from too much sensory input I am told that I am “rude”. I don’t mean to be, and I do not want to hurt anyone’s feelings but in that moment, I am trying to lessen the pain I am feeling. So, when Melissa is overwhelmed from sensory issues this might cause a meltdown….and if you knew how much sensory pain she experienced daily that she DID NOT react to, you’d know why meltdowns happen. It’s usually the last straw when we melt down. We are not trying to be rude or cause a scene, but we are in pain and we are trying the best that we can in a world that is really pretty shitty to autistic brains.<br />—<br />Imagine that I accidentally dropped a giant log on your foot and at the same time you were unable for whatever reason to tell me and I didn’t notice. Then I ignored the gestures and other ways you tried to communicate that to me. Not intentionally, but I just didn’t understand. You are dealing with this log, unable to move past it and it’s causing you so much pain that you eventually start to scream at me to get the damn log off your foot. I wasn’t TRYING to cause you pain, it was all an accident. And I wasn’t TRYING to ignore your pleas, I just didn’t realize or know any better. And when you finally screamed or had enough, I just get offended that you reacted to the pain. <em style="border: 0px; margin: 0px; padding: 0px; vertical-align: baseline;"><strong style="border: 0px; margin: 0px; padding: 0px; vertical-align: baseline;">This is how it feels to be scolded for having a meltdown…..A meltdown is a bit like that…..</strong><strong style="border: 0px; margin: 0px; padding: 0px; vertical-align: baseline;"><em style="border: 0px; margin: 0px; padding: 0px; vertical-align: baseline;">it’s a </em>reaction….it’s not an intentional act to upset another person.</strong></em><br />—<br />And I get that it can be scary for a non-autistic person. It’s scary for us when it happens to us too!<br />—<br /><em style="border: 0px; margin: 0px; padding: 0px; vertical-align: baseline;"><strong style="border: 0px; margin: 0px; padding: 0px; vertical-align: baseline;">When an autistic person melts down, the best thing you can do is to not put any more demands on the person. Don’t ask a bunch of questions or yell at us, scold us or tell us what to do. The best thing you can do is just be there, without judgment and to not hold it against us in the future. Meltdowns sometimes help us process things when we are at our limit….but they are not fun, they are embarrassing and we don’t enjoy them.</strong></em>—<br />Perhaps a good idea is to sit down with Melissa when she’s not upset or having a meltdown (or if she wants help, I can help her over the internet too!) and come up with a plan for what to do when this happens. I have a plan, my autistic loved one has a plan and they are helpful a lot of the time! <em style="border: 0px; margin: 0px; padding: 0px; vertical-align: baseline;"><strong style="border: 0px; margin: 0px; padding: 0px; vertical-align: baseline;">The autistic person needs to be in charge of what happens and what the plan entails though.</strong> </em><br />—<br />Movement<br />—<br />Movement involves things like stimming and how we use our bodies to navigate the world. Most people stim. Autistic people do it in ways that might look a little more obvious to the outside world. It also involves the need for a LOT more downtime than most people realize.<br />—<br />In addition to all that, I know that Melissa has experienced trauma and as someone who understands and gets complex post traumatic stress syndrome (CPTSD), I know how disabling trauma can be. Unfortunately, most autistic people are familiar with trauma. <em style="border: 0px; margin: 0px; padding: 0px; vertical-align: baseline;"><strong style="border: 0px; margin: 0px; padding: 0px; vertical-align: baseline;">It’s not a part of being autistic as much as it’s a part of how people treat you for being different.</strong></em>—<br />One thing you have to understand about trauma is that it causes incredible anxiety. This can be seen in things like a need for routine and schedules, wanting things to be a certain way, not liking to have to deal with changes or spontaneous shifts in our routine, the need to control our environments and things around us. The trauma of repeated sensory overwhelm makes most autistic people need to have things very rigid and controlled because we don’t want to have to experience sensory overwhelm and meltdowns all the time.<br />—<br />Melissa has experienced a lot of emotional trauma as well, and this also results in a lot of anxiety and the need for reassurance. This is something people can work on together….for example, I will ask the same question over and over again to make sure and it makes my non autistic loved one/friend irritated. So, we have a plan that I can ask four times and that’s it and if the answer changes after the four times for any reason, this person will tell me immediately. Then I know that the answer is the same without having to keep asking because they have not told me differently yet. I know that might sound strange to others….but it has helped to have that plan in place so much. But CPTSD will manifest in many ways and it changes a lot, so that is something that Melissa deals with as well. It’s a thing we need to work on, but it also is a thing that requires understanding from the people around us and <em style="border: 0px; margin: 0px; padding: 0px; vertical-align: baseline;"><strong style="border: 0px; margin: 0px; padding: 0px; vertical-align: baseline;">it means that building trust in relationships is even more important for people like us.</strong> </em><br />—<br />I know this is a lot, and I have a hard time getting to the point, sorry. But Melissa is very dear to me and I love her a lot. I want her to find the kind of support that she deserves and to be happy and to feel safe and secure in her home and community. That is what we all deserve. Please feel free to ask me any questions even if it takes me a minute to get back to you because I don’t have messenger on my phone. You can also text me at any time. and I will try to help as best as I can from far away.<br />—<br />Thank you to my dear friend for writing this up for me.</div>
Melissahttp://www.blogger.com/profile/17458872329425009616noreply@blogger.com0tag:blogger.com,1999:blog-8942863686705986301.post-66241071727312582262019-04-05T13:34:00.002-07:002019-04-05T13:34:34.583-07:00My Latest Medical Hell In The ER<div class="_2cuy _3dgx _2vxa" style="border: 0px; font-size: 14px; margin: 0px; padding: 0px; vertical-align: baseline;">
TW/CW: Discussion of medical symptoms, bodily fluids, and ableism, violation of bodily autonomy, disrespect of my humanity.</div>
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In my lat blog post, i wrote about a recent scare i had when too much fluid was once again taken off of me at dialysis this past Tuesday. I got so afraid, because i could not eat or drink a thing, a huge painful gas bubble was in my upper abdominal cavity, and my urine was a dark brown color. I was also having slight dizzy spells.</div>
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I had my caregiver, Sam, take me to the hospital, to the ER, that evening.</div>
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This blog is about the ableism that occured, mainly from the first doctor and the two ER nurses i dealt with while there.</div>
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For one, i was greeted with a triage nurse who was not rude, but who wasn’t that friendly either. He took my history, my symptoms, and vitals, and let me know what all my vitals were, except for when he told me my temperature, he said it in metric form, and would not let me know what my temp was in Fahrenheit form. Then a registration person (female-presenting) took my info as well. They were friendly.</div>
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When Sam and i went back to the ER area, that was one hot mix of both bad and good. We waited like 35 minutes to be taken back to the ER room.</div>
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My first nurse was nice enough. Until later. (More on her in a bit!) But firstly i was put in an ER cubicle that was shared, not one of their many private ER rooms. And there was a woman in the first bed, along with a male presenting person who was standing and holding a 3 year old boy, who was running right into my area, and then crying so loud i could not hear my nurse or doctor. Okay, disclaimer, i love children, but the loud noise of the little boy’s crying was triggering me, as i was already a ball of anxiety and nerves, and i had to leave and get placed into another non-private ER room with two beds.</div>
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Okay, while i was still in the first ER room with the crying boy, a doctor, Dr. J., came right in, and upon haring my symptoms, he, without first asking me, reached over, grabbed my t-shirt, pulled it up, and began feeling my entire abdominal area. Then an unneccesary argument ensued when they wanted to put a catheter in me to check my urine, instead of the toilet hat they use for us fat folks that cannot do a conventional urine sample (pee in the cup). I refused the catheter, and they consented to the toilet hat.</div>
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I had Sam wheel me into the restroom, but we were unable to get the hospital wheelchair in to the restroom, so, the nurse proceeded, without warning, to lift up my legs, roughly, again, without first asking me, to move the wheelchair’s leg rests off to the side, so i could get out ad walk into the restroom. I reacted instantly by snapping at her to ask me first before just touching me. And let her know she was hurting my legs. I let her know i had lymphedema, and that her roughness could cause leg ulcers to break out on my calves where she was lifting them up.</div>
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She was not that friendly either. And she talked too loudly, so that everyone else in that whole area could hear what was going on. Isn’t that a violation of the new HIPPAH laws?</div>
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The following are copied and pasted from an actual survey i got in my email this morning from that hospital. Re-edited for clarity.</div>
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I dealt with a total of two ER nurses that night…St., and Ch.</div>
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Both nurses I dealt with were mostly condescending, and when i explained I am autistic and have certain ways I need for things to be, sensory issues, etc., (my accomodations for my disability of autism) they were both dismissive, and instead were quick to defend the rude nurses I had in a previous stay, over my valid complaints. I felt unheard, and talked down to.</div>
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In addition, when my first nurse, St, took me to the restroom, she handled my legs roughly, and without first asking me when helping me to get from the wheelchair to the bathroom.</div>
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ALL of ANY hospital’s staff needs to ask us first whenever they need to touch and move us. I believe in treating patients with utter respect and courtesy, and this means respecting our bodily autonomy. ALWAYS, ALWAYS, ALWAYS, ASK FIRST! And if we go to tell you things, do not dismiss us, and defend your staff over the feedback we give on them. That too, is dismissive.</div>
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I saw two doctors while there in their ER. The first one Dr. J, came right up and pulled the front of my t-shirt up without first asking me, to check (feel around) my abdominal area. This was invasive and a disrespect of me. While I realize he needed to check my abdominal area, he still needed to ask me first. Again, the entire ER staff need to learn to ask patients first, before you touch us. It shows respect and care for us as the human beings we are.</div>
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My second doctor, Dr. Sh, showed respect and was kind to me.<br />—<br />The lady dressed in a bright red pantsuit who came to draw blood for my labs was friendly and respectful.<br />—<br />The male-presenting individual who came to do an abdominal ultrasound, was also friendly and cool, and showed me respect.<br />—<br />However, I was only given partial information about my possible condition, and no one has since bothered to follow up with me from your hospital as to the FULL RESULTS of all blood tests, or the ultrasound I had while in your ER.</div>
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I was quite impressed with the courtesy and respect that both ultrasound person and person who came to draw my blood showed to me. They even asked me if i wanted the overhead lights kept off, to which i said yes, because bright overhead floursecent lights bother me greatly.<br />—<br />However, none of them would barely talk to, or acknowledge my caregiver and friend, Sam.<br />—<br />The reason I marked very poor for privacy is that I was put in two non-private ER rooms.<br />—<br />I was never visited by a hospital leader.</div>
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In addition, both of my nurses, which again, were St and Ch, never bothered to give me the TV Remote/Call Button, until I finally asked for it, and was given it only after I had asked for it, a full two hours after I came to the ER.<br />—<br />I was never offered water to drink, or a blanket, or asked if I wanted the room temperature lowered or raised. I was cold the entire time I was there.</div>
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In addition, when nurse Ch came in with Dr. Sh and a second Doctor, nurse Ch reached over and shut my entire TV OFF—–AGAIN, WITHOUT ASKING ME FIRST IF IT WAS OKAY IF THEY COULD HAVE THE TV MUTED so that we could talk. I would have been more than happy to mute the TV myself. It would have shown respect again, for my autonomy and me, as a human being whose feelings mattered to them.</div>
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Considering the overall manner I was treated by staff when i visited your ER on April 3, 2019, no, I would not recommend this ER to anyone.<br />—<br />I felt most unwelcomed there, like most of your ER staff that was on that night, just did not care.<br />—-</div>
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In closing, i am writing this, because my local hospital needs to train their staff to do all they can to make each and every visitor feel welcome in that hospital campus. The entire medical field needs to change and realize we who come seek medical help, are human, our bodies our ours, and they need to listen, hear us, and be patient and kind to us. Don’t manhandle our mobility equipment, don’t talk loudly so the whole facility can hear, and give us the choice of whether we are okay with being in a non-private ER room or not. I will wait for the private ER room, because our local hospital has a majority of their ER rooms as private.</div>
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It was strongly recommended that i be admitted that evening. But i refused, because of how i was being treated in their ER that evening.</div>
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P. S.~~~As for my condition, i recovered the next day. I could once again eat and drink, and my urine has been clear since then too. So it was dialysis related, them taking too much fluid off of me, that caused me to get sick.</div>
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Melissahttp://www.blogger.com/profile/17458872329425009616noreply@blogger.com0tag:blogger.com,1999:blog-8942863686705986301.post-38039652344335556932019-04-05T12:26:00.000-07:002019-04-05T12:26:18.228-07:00A Frank Talk<div class="_2cuy _3dgx _2vxa" style="background-color: white; border: 0px; color: #444444; font-family: "Open Sans", Helvetica, Arial, sans-serif; font-size: 14px; margin: 0px; padding: 0px; vertical-align: baseline;">
TW/CW: Discussion of dying, death, and chronic illness, also ableism by medical staff at a hospital. And yes, i do discuss my faith, and belief system (mention of Christianity and Jesus, but i promise it is non-preaching.)<br />—</div>
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Last June, my world came crashing down. I was hospitalized on June 16th when my then caregiver, K, came and i was almost passed out in my chair, weak, and unable to move much. My lymphedema leg lump that is on my left inner thigh, had become red hot infected. And when i got to the ER, after they did labs on me, they said i had a severe infection in the leg lump—and—end stage stage 5 kidney disease. I was hospitalized for a total of three weeks.</div>
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Two days later, i had surgery to implant a chest catheter at the right side of the base of my neck, which goes into my heart, in order to start immediate kidney dialysis.</div>
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I’ve been on dialysis ever since, starting in the hospital, and then in center when i got discharged from the hospital July 5th.</div>
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At first, i was so devastated—and i actually went through what people go through when a loved one dies, several stages of grief—denial, anger, sadness, depression, etc. I cried alot, and often out of the blue, i would burst into tears. This was so new and terrifying to me. I even called one of my siblings and left them a long message to let them know, i don’t hate them, and why i felt led to tell my story online in 2010—that my intention was not to put them on blast to hurt them, but to make them aware of how the way i was treated had a great profound, sadly, negative affect my life, and to educate others going through the same with their families, and to show others they are not alone.</div>
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But right away, i was met with a team of two nephrologists, who talked to me in depth about what i was to expect. Since my labs were stable, i was allowed to still eat mostly normally, just go light on foods with phospherous, potassium, and sodium. They told me they would have my back, and that the kidney center i would be going to for my dialysis would have my back.</div>
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I loved going to dialysis right off the bat. Most of the staff have been so supportive of me, and i have even made many friends and allies among them. I even created a cool new imaginary friend out of my dialysis machine, to help me to cope with having to go there for 4 hours three days a week, who is also a real ally, even though she is not real.</div>
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Okay, let’s get to the point of this story. Kidney disease IS a killer. It is eventually fatal. The dialysis machine, our second kidney, acts as our kidney, when our kidneys can no longer do their work to cleanse the toxins from our bodies. But with kidney disease, comes the risk of heart attack, cardiac arrest, stroke, infection of the access site, whether chest catheter, fistula, or AV graft, and damage to other internal organs.</div>
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Twice now, during dialysis, i have experienced an episode where i get a weird feeling all over, a huge gas bubble forms in my upper abdominal cavity underneath my breasts, my urine turns dark brown, and i cannot eat or drink a thing until the gas bubble and nausea slowly passes. This happened a month ago when they took off way too much fluid for my body to handle, then it happened again yesterday.</div>
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Lat night i felt i needed to go to the ER. There, i was treated to first one doctor and nurse, who without asking me first, pulled up my shirt to feel my abdominal area. That is a real invasion of my own body, to get touched without first asking. Doctors and nurses do this all the time, and it is downright disrespectful. Then the first nurse, also without asking me, lifted my legs from the wheelchair foot rests, was rough about it, and i told her to stop and ask me first, and to be gentle with me.</div>
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I stayed there for over four hours, only so they could get a urine sample, which by the way, never got tested, then blood was drawn, six vials in all. They also did a complete ultrasound of my entire abdominal area. But the way i felt like i was being unheard by the nurses and the first doctor, i refused to let them admit me. If i need to go back to a hospital, it won’t be this one in Santa Maria, it will be one in San Luis Obispo that has an excellent patient centered reputation. I just didn’t feel like i would be accomodated this time at our hospital…so i had Sam, my caregiver and friend, bring me back home.</div>
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I am able to sip small amounts of water now as of this morning. And update: I ate an entire Solo cup of Rice Krispies with 2% lowfat milk, and a sliced apple. my urine looks clear and light-colored again.</div>
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The prospect that i could die soon, is once again hitting me hard—and it scares me shitless. While i have never turned my back on my faith and Christianity (Jesus), since i have been woken about so many things, i no longer feel it is respectful or appropriate to those with different beliefs and faiths, and those who aren’t into faith, to proselytize. I never was a Bible thumper, but i did used to post alot of Christian themed memes when i first came onto Facebook, mainly out of guilt that if i didn’t post them i wasn’t a true believer—that i was denying my faith is Jesus. I still profess Jesus as my savior who died for me so i could have eternal life, but i also respect all of you who believe differently, are Jewish, Muslim, Hindu, or no faith in any God at all. I was hurt greatly in so many churches i went to, and i never want to be that kind of person who hurts others. I bring this up, because of the fact that i know i am dying, and there is a huge part of me that fears i may go to hell when i die—because i still cuss like a sailor, i still get pissed off, royally pissed. But ya know what? I now know anger is a valid emotion, and some people do not deserve our forgiveness. I know hell on top of all of the earthly hell i have already been through, would be the unwanted icing on the cake for me.</div>
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Sigh—-i don’t know where i am going with this talk. I just know i am real, and i just want to know that i made some kind of a difference in other people’s lives before i do leave this earth. And i want to live on after i die, in a happy place–whether it be Heaven, or in a new earthly life. Knowing that, would help to alleviate much of my fear of dying.</div>
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And i would rather die where i feel safe dying. Not with harsh nurses that don’t give two fucks about me, but with the people who i love, who love me. Like my now caregivers, Sam and Iris.</div>
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To all of you, my friends here on Facebook, to the ones who are not on my friends list now, but who i still remember with love and gratitude, to the few local friends i have, i thank you all for the love and support you’ve all given to me, for having my back, and for helping to wake me the fuck up about so many things i used to believe in, but don’t anymore because i now see so many truths that i didn’t see before. I have been awakened to the knowledge that i am both bi-sexual and non-binary/queer. I thank you all for enriching my life so much, for the true treasures you all have been and still are to me today.</div>
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I love you all, friends. Each and every one of you. To the moon and stars and back, i love you all so very very much. Your light will shine on me forever and ever and ever.</div>
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I wish i had enough time left to help bring this nation we live in to a place of true love, peace and well-being for all of its people, including our most vulnerable, elderly and disabled people, People of Color, LGBTQIA, Neuroqueer, Autistic/Disabled, Muslim, Jewish, Black, Latinx, Mexican, Puerto Rican, Asian, everyone. A place where healthcare is a fundamental human right. Where disabled people start being truly accepted, included and accomodated and part of the national conversation. Where gay and transgenders can feel safe walking down the street. Where an elderly grandmother can know she can get her meds, pay her rent, monthly bills, or stay in her home that she still owns, where Muslims and Jewish people can worship without fear of a mass shooter gunning them down. Where there is no more gun culture, period. Where no more Black youth get shot and killed. Where hate is stamped down. I would work for a nation that is no longer thought of as a cruel nation.</div>
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In the meantime, i am not dead yet. As long as i still breathe, i will spend my very last spoon defending my friends and my community. I will hold space for all of you. I will do what i can to spread the causes of love, truth, and justice.</div>
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Love and peace and light,</div>
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Melissa Fields, Still Here</div>
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Melissahttp://www.blogger.com/profile/17458872329425009616noreply@blogger.com0