Saturday, November 21, 2015

My Health, And My Words

I, an Autistic adult, turned 55 years old in May.
My physical health is not good anymore.
My legs are still swollen; i still have the awful
huge lymphedema tumor on my left inner thigh.
And it is getting bigger.
I also weigh 350 pounds now.
I went through alot of heavy things beginning in March of 2012.
In that month, my next door neighbor, and friend
who i had had many problems with during the course
of our six year friendship before our final falling-out,
suddenly turned against me for no reason at all.
He said it was because he was not going to run my errands
when i didn’t feel well anymore.
But i knew it was deeper than that.
He actually couldn’t stand me anymore.
And his hostility and hate really cut through me. I could feel his hate for me through every fiber of my being.
So i knew he hated me.
All of the other times we would have our fallings-out,
We would always mend our rift and things would be
good again for the next two to three or so months.
But this falling-out was radically different…..and……
…….this one was worse and darker than all of the others.
He got very mean, and began doing some of the
things he knew were triggers and sensory issues to me……
The loud golden oldies music that
made me relive my painful childhood,
his loud TV turned up loud, and his suddenly loud banshee yelling,
followed by several ugly emails where he slammed me and said i was
essentially a worthless piece of dirt who was lazy and
who had zero value.
He even threatened to call the police on me if he heard my music or any of my meltdowns.
He also went to all of the businesses where i was having problems with employees and their friends who were bullying me (and still are)
to let them all know i was making videos.
I suddenly began getting alot of hate comments on those videos
and even had to take some of them down
as he himself would flag them and threaten me
even though i needed to tell my story
He was done with me. Done.
I have deep PTSD and trust issues from childhood because so many people don’t understand Autism, and we get mistreated, misjudged, attacked, accused of, called tragedies and burdens, and essentially thrown away in the trash.

My mom could not talk to my friend this time. No one could.
His mind was made up.
My whole world collapsed around me, and i suddenly became afraid to step foot out of my house or drive anymore.
I began to have horrible frightening nightmares about him,
and night terrors.
I cried alot. I went into very deep dark depressions.
I began to fear i was going to die and go to hell like he
had told me i was headed to, in one of his awful emails.
My leg tumor which had developed a year before, got bigger,
and my legs swelled even more
He moved out that April, and on his last day here,
he stood outside and glared at me before leaving.
Thankfully, i had finally found a nice caregiver to take over and help me.
She helped me with my housecleaning, cooking, dressing, bathing, showering, all of it.
I sold my little white ’95 Toyota Tercel 2 door coupe that summer.
I have not driven since April of 2012.
I lost the ability to handle driving.
And then my caregiver turned very moody and mean, and i suffered another huge mental blow, so bad, i ended up chopping off all of my beloved dark red hair.
It has grown back again, but i still go through spells of frustration where i want to chop it all off again.
Since then, i have been through several very abusive caregivers
who would grill me about my meltdowns, demand lots of money from me for gas, and other mean things—-some of them would really yell at me
and i also went through more friendships that never lasted.
Today i finally have a kind compassionate caregiver who
Has become a real true friend and ally to me.
But when she is not here, i am all alone and lonely, sleeping all of the time now, and
i now feel dizzy alot, and just…..just…..really tired.
I come from a large family, but only have acceptance and love from my mom and two of my three sisters.
I call my mom every single day, and sometimes more than once a day if i am in alot of distress.
I have absolutely no contact or relationship with my three brothers, my other sister, nor any of my nieces and nephews. In fact….the one sister and one of my sisters-in-laws has me blocked so i cannot contact either of them.
I am writing this because to be honest, i feel like i am going to die soon.
And i want you all to know a few things……God puts us all on this earth, and we are all different…..
Some of us are disabled and require more care, patience and understanding.
But that does not make us bad or wrong….or less-than.
If any of you have a sibling, relative, or friend who is disabled…..
we cannot always be fixed or cured.
That does not give you any right to abuse us, and give up on is, and do it in a way that is mean and demeaning to us.
It does not give you a pass to ignore us and pretend we don’t exist. Or to financially, mentally, and physically abuse us. Or to gaslight us.
We are human beings…..and we deserve to be loved, accepted and included and to be a a part of our communities.
Please read my words and take this to heart. I honestly don’t know the course my health is going to take……all i know is that i feel as though if
i had my family
if had a group of local friends who would come visit me
take me places….to the ocean, to the nearby cool towns we have around here…..and even to any evening services at a cool laid back church where i would be truly accepted…….i may stop feeling so tired and like i’m going to die.
Please know
I say these words as truth!!
When people are alone and lonely
they lose hope……and the ability to dream and to go on.
Please don’t ignore us. Let us be who we are, and just be our friends.
And don’t give up on us.

Sunday, November 15, 2015

My November Appeal

I didn't get up until after 5 PM this late afternoon. I managed to sleep ALL day long today. I got to see the rain start, but i slept through all of this morning's rainstorm. And then through all of this afternoon's clearing. Because.....i have no one to visit me on Sundays, and no one to come and take me places so i can get out of this house. Connie wants very much to be able to take me places, and she would, but her car needs some repairs, and she is unable to get those repairs done now. In the meantime, i do have a few local people on my friends list who i know read these posts who could find at least a couple of hours a month to come visit me, and maybe take me to the movies at the mall. Or once in awhile take me to see the nearby ocean. I am getting lonelier and lonelier, and cut off from the outside world, and yes, being lonely and cut off from the outside world does affect a person's physical health. It shortens our lives. If only i could even make some friends from the LA area, friends who are Autistic friendly, who would be willing to come once in awhile, like Penny used to do from Bakersfield, until my ex-high school friend/ex-caregiver, S., caused HER to turn against me. When i had Penny, i did get to go up to San Simeon, Cambria, and Morro Bay. Then Pismo, Avila, and the Avila Pier just before the Pierside Cafe closed. I don't know how much longer i can go on like this. My own brother who still lives here won't have anything to do with me either.
The good news though? Is that this year, Connie is bringing me a full Thanksgiving dinner of dark meat turkey, ham, stuffing, mashed potatoes and gravy, rolls, string bean casserole, and dessert.....which includes pumpkin pie. :) I am looking forward to that with all of my being!! :) I just wish i had a group of local friends who would come by, bring me a chocolate mocha from Starbucks, and visit, or take me up to the coast for a day out. I don't understand why this town is so against me. I am not a monster. I am not a bad person. I am Autistic, and i am hurting from deep down inside because most people blatantly ignore me.

Sunday, October 18, 2015

I Am 55 Now….What Is There Left For Me?

I did not win last night’s Powerball lottery either.
When you are poor, 55 years old, have never worked, and have lived trapped unable to escape a bad neighborhood with bullies for the past 24 years,
When you are Autistic and no one understands you except your long-distance friends who do get you, your mom, two nice sisters, and your caregiver,
but the whole entire rest of your family all ignore you and hate you for telling your story online, instead of seeing why i had to tell my story
and there are no resources, no help available, yes, some of us dream and hope for things like the lottery to be our way out of our trap.
I am so lonely i hurt inside and out.
I am so depressed i feel like there is no light at the end of my tunnel.
I keep on losing friends because either they can’t take the intensity of my situation, or they just get pissy and mean.
I still don’t get to go places because of my legs, and because i still don’t have the mobility equipment i need, and ramps so i can get in and out, and i had to stop driving in 2012.
I have actually become frightened of going anywhere alone, and must have someone with me everywhere i do go now.
I so love it when my caregiver comes each day, as she and i do alot of talking and laughing. If she had a newer car that didn’t need repairs, she would take me to the coast.
But when she isn’t here, i have no one to talk to, hang out with, visit with, so i go on Facebook.
I do also talk to my mom every day, and sometimes one of my nice sisters.
But lately, my depression has gotten so deep i am left with no spoons most of the time….no spoons, no energy, and no strength.
With the huge leg tumor on the inside of my left thigh that goes from my groin to below my left knee….things such as hopping in the shower, even with help, has become so tiring….and it hurts me to stand long enough to even pop food in my microwave now… hurts from my whole lower back, down both legs and feet.
It has also become difficult for me to get in and out of any vehicle, except for a regular four door passenger car. Even that takes me having to get creative as to how i get in and out due to this lump.
Here i am at age 55.
All i have is a lifetime of this same kind of loneliness and isolation.
Back when the leg lump was smaller, i would beg and beg my doctor and the people at the lymphedema clinic to help me, and they refused……so this lump just got bigger and bigger and bigger…..and i fear that someday i will need to be put in a nursing home where i will then lose what freedom i have left, altogether.
I wish to God, someone would see my story and help me before it’s too late.

Wednesday, September 23, 2015

What Keeps Me Going

The fact that i can come to my computer anytime of the day and night, and i have supportive friends.
The fact that i have a TV to watch, and can also watch anything i want to watch via YouTube too, online.
The fact that i, as an Autistic adult, now have a real forum to tell my story and post blogs and vlogs.
The weather cooling down yesterday.
My caregiver and friend, Connie.
Facebook and all of you.
My mom and my two nice sisters.
The understanding i have garnered of Autism and Autistic Acceptance through Facebook and the internet.
Again, all of my awesome Autistic/Disabled Community friends.
The fact that it is now officially Autumn.
Getting to go someplace scenic once in awhile.
My Slurpees.
The beautiful sunrises and sunsets when they happen.
Beautiful and unique clouds.
Beautiful scenery....especially seeing pictures of Michigan, The Great Lakes,
New England, New York, NYC, Canada, the Aurora Borealis, the Midnight Sun.
and the Fall Foliage.
Having the hope that i will win the lottery so that i can
finally move away from the mean bullies and their loud bass and hot rod noises,
and get my leg surgery done, so i can have my left leg back.
Hope...always that light of hope that someday it all will get better.
To all of you who suffer because you can't get out and do 
the things you want.....please know, you are not alone.
But as long as we have hope and each other, and people who believe in us
it will always get better.
So keep hoping and dreaming and believing.....and know.....
you are not alone, because we have each other.
And miracles can and do happen.
I believe in a Higher Power and in rainbows and unicorns too.
I would love to wake up one day to see a tye-dyed sky outside.
I do believe that too, can happen.
But in the here and now, the cool thing is that we all have each other.
And that is what gets me through each day.
I love you, everyone. 
Thank you all for being in my life.

Thursday, September 17, 2015

No, Donald Trump, You Are Wrong!!

The following is a transcript of the part of tonight’s debate, now that i have had a nap, and some of my spoons are back, in which Donald Trump, and other Republicans are continuing to blame Autism on vaccines.
This….needs to stop. It is this kind of talk and attitude which keeps us in a place of continuing to be misunderstood, misinterpreted, unheard, not listened to, muzzled, silenced, abused, discredited, stigmatized, Othered, thrown away, ignored, mocked, laughed at, exploited, denied quality medical care, denied quality services and supports. The way Trump, Paul, and others talked about us, was like we are all wrong and damaged goods.
Just no.
Autism has always been around. Autistic people have always been around.
I thank God for the internet and social media, because the internet and social media has given us our voice and platform to effectively get our stories out there. That, and better diagnostics are why we are more visible. And we are not tragedies and burdens. And we are not an epidemic.
We are human beings in need of being heard, listened to, and accepted, and included.
I have made this post, and transcript into a blog for my Facebook, WordPress, and Blogger blogs. Here is the transcript:
” Carson: There have been numerous studies and they have not demonstrated there’s any corelation between vaccinations and autism. This was something that was spread widely 15 or 20 years ago and it has not been adequately revealed to the public what is going on. Vaccines are very important – certain ones, the ones that would prevent death or crippling. There are others – there are multitudes of vaccines which probably do not fit into that category and there should be some discretion in those cases.
Trump: Autism has become an epidemic. 25 years ago, 35 years ago, you look at the statistics, not even close. It has gotten totally out of control. I am totally in favor of vaccines. But I want smaller doses over a longer period of time. … I am in favor of vaccines. Do them over a longer period of time. Same amount but just in little sections. And I think you are going to see a big impact on autism.
Carson: The fact of the matter is we have extremely well-documented proof that there is no autism associated with vaccinations. But it is true that we are probably be giving way too many in too short a period of time. And a lot of pediatricians now recognize that and are cutting down on the number and the proximity in which those are done and I think that’s appropriate.
Trump: That’s all I’m saying.
Paul: One of the greatest medical discoveries of all times were the vaccines particularly for smallpox … I’m all for vaccines, but I’m also for freedom. I’m also a little concerned about how they are bunched up. My kids had all of their vaccines and even if the science doesn’t say bunching them up is a problem, I ought to have the right to spread my vaccines out at the very least.
Huckabee: We need to remember that there are maybe some controversies about autism but there is no controversy about the things that are really driving the medical costs in this county. And I would really believe that the next president ought to declare a war on cancer, heart disease, diabetes, and Alzheimer’s, because those are the four things that are causing the greatest level of cost. … I grew up in the 50’s. I remember the polio vaccine. We saved billions of dollars since that time because we haven’t had to treat for polio. Why doesn’t this country focus on cures rather than treatment? Why don’t we put a definitive focus scientifically on finding the cure for cancer, for heart disease, for diabetes, and for alzheimer’s, a disease alone that will costs us 1.1 trillion by the year by 2050. “
They would all do well to read Steve Silberman's Book "Neurotribes". 

Wednesday, September 16, 2015

My Latest Medical Nightmare

The following is what happened to me yesterday, and is another perfect example of how not to treat an Autistic person. Ever. Ever. Ever.
Because we process, smell, experience, feel, touch, taste, see, and hear everything differently than you do. Because when you fail to respect and listen, it will cause us to meltdown and shut down and not be able to talk or deal with you.
In my case, today, i almost lost vital services that i need because of the physical therapist they sent to me. Because he was harsh, blunt, and unfriendly. And he would not listen to me.
Here is my earlier post from yesterday. And why i am now scared to be alone when dealing anymore without my caregiver or someone who understand and can come in and advocate when i lose my words.
Yesterday i not only lost my words….i did have a bad meltdown because of how the physical therapist treated me.
My post:
“Later on i will have a story to tell about just how insensitive medical staff can still be towards Autistic people.
I had my visit from the physical therapist today. Thankfully, Connie was sitting right here across from he and i, and witnessed the whole encounter between he and i. To make a long story short, he was brusque, unfriendly, and unwilling to really listen to me. In fact, he was unfriendly towards me right off the bat, putting his bag down right by my TV outlets, which set me off, because i do not like for anything to be placed up against my electrical outlets. So, i asked that he move them. Then he took it upon himself to sit down in my computer chair without first asking me.

He and Connie then left the room to go look at the heavy wheelchair i was given, and then my hospital bed.
Then when Connie and i proceeded to explain my needs for a Hoveround, and a new hospital bed that i can get in and out of easily, he interrupted, started to tell me he was going to have to get in touch with the place where i got my current hospital bed, which triggered me because that place was very unpleasant for me to deal with when i had to deal with them in July of 2012—-they were the ones who sold me a defective lift chair, and then came with a huge thick rock hard mattress for my hospital bed, which made it impossible for me to get in and out of that bed or to sleep in that bed, so i jumped into say i can’t deal with that place again because of how they were rude to me. Because he—the physical therapist who came yesterday, failed to communicate clearly to me and make it plain at the time that he was only going to be calling them to find out why i didn’t get a better mattress, so he could proceed from there. Had he of let me talk, and explain all of this, then after i talked, he would have explained that he was only going to be calling them to see what went on, so he could know how to proceed in how to help me—— i would have been okay——SO okay. But no. Instead, he began the now all too familiar and painful “Shutting-Of-The-Door-On-Melissa” routine.
His response was to tell me that if he couldn’t work with Best Care, there was nothing more he could do for me. I was already tense due to his unfriendliness, and when he closed the final door on me, i lost it and had a bad meltdown—–because——more ppl being dismissive and shutting the door on me for the help i need——is a huge NO. This is the same reason why i haven’t yet been able to get the leg surgery i am needing so i can walk again and drive a car again. Because of assdouche douchecanoe dickwads like him.
Because the cancer specialist i saw also disliked me and treated me brusquely.
I told Connie i was going to post about this, and she is okay with me doing so—–because this experience illustrates how we Autistics are still dismissed and muzzled and not allowed to be heard and listened to.
Shielding my face from his, because he had upset me so much that i didn’t want to look at him or feel his presence in my house anymore, i turned to Connie and asked for her to talk to him…and he continued to keep saying he can’t do anything….and so i began room spinning around me, more red-faced, more shaky and louder, hand-flapping, saying “No, no, no”, over and over, and so he left, and she followed him outside and talked to him there.
She said he made the comment:
“This is NOT Autism”,—-implying the this was something else—-but not Autism——
and she said “Oh really? What makes you so sure about that? Are you an MD? No. You are a Physical Therapist. And you are wrong.” She proceeded to explain she has worked for me a long time….that yes, i AM Autistic, and he is NOT qualified to make that diagnosis after only meeting me for five minutes.
Feeling remorse, he attempted to come back into apologize, but i was still in the thick of my meltdown, still very upset and angry—— so i said no, no, no, and “Furthermore, i do not want him to come back to my house—-ever!!”
When my nurse came, we told her what happened, and she is making a full report and getting me assigned to a female physical therapist who she is certain i will like.
I will be making this into a blog later on.
And i have. Please like and reblog and share this.

Wednesday, September 9, 2015

When I Say No, I Mean No!!

Early this morning my doorbell rang as i was organizing drawers in my bedroom. It was a caregiver who i had for three times off and on from late May 2013 to Feb. 28, 2014, a lady in her forties named JuJu….not her real name. During her times with me, she would talk down to me at times, insult me, slap my lotions and creams on me, tell me no, she was not going to do what i was asking her to do, and she would make me wait on my needs. In addition, she made me have to cancel several of my doctor’s appointments. The biggest thing though, was that she was always, always asking me to give her gas money for her car… the tune of $25 to $35 to sometimes $45 per week….i could ill afford to be giving her this money, and would try my best to tell her i can afford maybe $10-15 a week…..but she said no….. we would have to limit things if it was any lower than what she was demanding i give her. I was always broke because of her, and had to resort to paying only minimum payments on my credit cards, because she took so much money from me. I even had to go to the bank and get three cash advances off of those cards so i could afford to pay her for her car expenses she said she had because of my errands.
JuJu was one of a long string of very abusive caregivers that i had from March 2012 until i fired JuJu on February 28, 2014, and finally found Connie in March of 2014. Things got so bad while JuJu was my caregiver, that i was actually making serious plans to move to Michigan. But then shortly after i fired JuJu, and got Connie as my caregiver, the lady who i was going to live with in MI, suddenly turned mean….so my plans for a new start in MI were off.
I then had to suffer through two more bad caregivers when Connie and i took a one month break earlier this summer.
My wall post from Facebook tells the story of what happened this morning. I wrote it well after JuJu’s visit, after i had gotten done watching YouTube videos, which i watched to help get me to calm down.
“~~~I just got done watching YouTube. That has helped to calm me down some.
But yes, i am still very scared. M, the first temporary caregiver who i had when Connie was gone for that one month, and JuJu, KNOW one another. M also knows JuJu’s Apostolic Christian sister too. They are all friends with each other. How i know this? Because when M was working for me, she asked me about JuJu and Jess, and told me right out that they were all friends.
And now? Tonight? JuJu pulled up her big black pickup truck right into my driveway at 1:45 AM this morning, and rang my doorbell, because she wanted to come to visit me and see how i was doing. She looked disheveled, and was wearing dark pants and a thick black coat with gold buttons down the front. Yes, even though we are in the middle of a heatwave, and the outside temp was still 67 degrees at that hour of the morning, that was what she was wearing.
I opened my door, and she asked if i remembered her?
I said “Yes, what the f**k?” and then
“What the f**k are you doing here?”
She said “I just came to visit you and see how you are doing. I knew you would be up, so i thought it’d be okay to stop by.”
I was like “Ummmm, at THIS hour of the morning?”
She got nervous and said “Uhhh, maybe i should just go, maybe this wasn’t such a good idea.”
“No, it wasn’t,” i replied, “I meant it when i said i never want to see you again. You were mean to me.”
She was like “Okay, if you want to be that way,” and then kept yelling at me in a snotty tone of voice as she went back to her truck.
I told her that she needed to leave now, or i would be calling the police.
She did start her engine and leave.
I called the police anyway, and told the dispatcher everything about JuJu.
A nice officer came, and i told him everything. He said he is on all night tonight, and that he would patrol my street all night long.
Today is one day when i can hardly wait to see daybreak.
Yes, i am still scared shitless!!!~~~”
When i say no, i mean no!!! 
When i say i no longer want to see you, i mean that.
When i say i cannot afford something, i mean it.
When i say i don’t want to be talked down to, gaslighted, demeaned, treated as “less-than”—i mean that too!!
To JuJu…..M…..A…..CeCe…..KT…..Sh***y…..Jess……Little Jess……i am still processing through all of the emotional and mental hell you all put me through. Please don’t get angry because i need to write, vlog, and blog about it. I am writing about this not to slam and badmouth anyone, but because this is part of my story. And it is an important part of my story.
Because you all abused me physically, mentally, emotionally, and financially. You all abused me by also gaslighting me.
But above all……please… not call me, email me, seek me out, or come to my house anymore……when i say no, i mean no…..i never want to see or hear from any of you ever again…..because none of you understood me, none of you respected me, none of you realized that i am not a monster, that i am not a behavior problem……
NONE OF YOU REALIZED THAT I AM AUTISTIC!!!! AUTISM is a neurological developmental disability. No One can fix, cure or make me non-Autistic. This is who i am, and who i will be till the day i die. This doesn’t give you a pass to hurt, exploit, abuse, and discriminate against me in any way.
I will say it again…..DO NOT CALL ME, VISIT ME, EMAIL ME, OR CONTACT ME IN ANY WAY, SHAPE OR FORM. When i say no, i mean no.
Or i will be forced to take legal action. And i will.