Wednesday, June 29, 2011

My Medical Nightmare

Yesterday's Nightmare....And....How I'd Love Things To Be
I have bad lymphodema on both of my legs, as most of you who know me, know....basically, this is a veinious insufficiency, which causes the swelling and sometimes even open sores which i cannot take care of myself, due to my weight issues....and is a resul...t of me not being able to sleep laying down anymore, i must sleep siting up and back on my couch now...and have had to sleep this way for the past seven years. I have been trying to get a medical provider so i could get the leg treatments and leg therapy again on my legs. Well, last week i had my first leg appointment with a kind lady named Diane. She washed and wrapped my legs perfectly, and was very patient with me about how i wanted my socks to be put on and everything......but when i set up my next four appointments, i was told i would be seeing the other lady, Connie, a lady who i had had problems with in the past when i had seen her two years ago. I told Diane of my fears, but Diane said it would be okay, so i decided to give Connie another try. Well, at yesterday's appointment, Connie was okay with me at first. We talked about music and the nice town she lives in that is 20 minutes North of where i live, and how i'd love to live there. We also talked about autism, and how my autism manifests. She seemed understanding at first, and seemed to do a wonderful job at washing and massaging my legs, too. However, problems began to arise when she would touch my feet...they tickled alot when she would touch them, so i would laugh and jerk them away from her touch as an automatic reflex....so she finally ended up losing her patience, making a remark that made me feel very uncomfortable...yes, she probably may of meant it to be teasing, but i didn't like the manner with which she said what she said to me...her remark, said in a loud voice, with her eyebrows arched and a snarky look on her face was: "Oh, you know, i can really make your feet tickle! Just watch me! Oh yea, i can really make them tickle!" That remark and attitude left me kind of afraid of her, because i did find it to be harsh. Then, when she began to put the lotion on my legs....she put it on my left leg and left foot, and massaged it in real nicely, which felt very good, and then put the lotion on my right foot, but not my right leg at all. She began to set about dressing and wrapping my legs, so i stopped her and politely asked her to please put the lotion on my right leg. She snapped at me, saying she had already put it on my right leg. Too afraid to say anything now, i let it go at first...but it really bothered me, so much that i had to say something, so i then told her again that i knew she did not put the lotion on my right leg, and to please put the lotion on. She got impatient with me again, but then did put the lotion on, telling me that i may have to buy them lotion if i keep asking for more lotion, which i wasn't doing...i was asking her to do what she had not done and was supposed to do. So she dressed and wrapped my legs. But then, when she began to put my socks on, she put them on where they were wrinkling and bunching up on my feet, and i asked if she would please put them on tighter, because with the wrinkles, and if they aren't put up and over the back of my heels tightly they ride up on my feet, and i really feel it and it affects how i walk...she again snapped at me, giving me another one of her hooded eyelid looks, saying "Oh, you want to put your own sock on?" I said, "I hope you aren't going to be mean to me." She said "I will be patient with you if you will work with me." I replied that i am trying to work with her, that i am autistic...that i do not try to be difficult, i am autistic. She then went onto complain how hard it is to work on me....in fact, she seemed to not want to help me at all then, and i had to also ask her to help me get my shoes on, too. Because opf my weight, i have an awful time working with my bodsy below my hips, due to my weight....and Connie was well aware of this. We parted, with her saying goodbye in a loud sarcastic tone of voice....that didn't feel nice to me either. I know i was not accepted by her...as she also had begun to complain how hard it was to work on my legs...... I went to get my iced tea and food for my dinner and came home to eat, as the scenes of that appointment played over and over in my head. I posted about it on Facebook....but was too tired and depressed to stay on and talk to everyone. Now that i have had some rest, i am up and writing about this. People.....autism is something that is....we cannot take oit off and act like the world wants us to act and perform. I am nice to people....but i always seem to get treated like i am a piece of dirt or a dirty sack of potatoes....and this, especially in doctor's offices and medical offices.....needs to be addressed and dealt with. I have been routinely discriminated against by this particular physical therapy place that i am forced to go to for my leg treatments, by the supervisor who runs it, and by people like Amy, another lady who i had had the leg treatemnts with, and by Connie, who is loud and snippy. I am also taken way back in the back, away from the front offices and away from everyone, where i feel more isolated and more of an easier target for this kind of treatment...and this frightens me and worries me sick...that Connie could be even more mean next week when i see her again. I feel i have no choice in the matter....and if i say i want Diane to treat my legs, then i will be forced to go in earlier, which will be even more of a challenge...hardship...for me to do. What i want from these places is reasonable accomodation for my disabilities. An office where the staff all know me by name and greet me like they are excited and glad to see me come. A place where i am cared about, and positively affirmed. A place where my meltdowns are understood. A place wher i feel i belong.....where i don't feel as if i am a burden. Yesterday, one of my Facebook friends posted about how it is for her where she gets her medical care, how they accomodate her so well....i hope she will repost her story in the commnets on this thread, by the way, ....because that is how things should be in medical offices and hospitals. Not the cruddy treatment i keep getting, over and over and over. Especially when i do not feel that i do anything to warrant this kind of awful treatment.

3 comments:

AnaG said...

Hello Melissa,

For the publication of your book, did you try to get in touch with
Jessica Kingsley Publishers in London?
Their website is www.JKP.com; they are specialist in books on the autistic spectrum, and have already published a lot of books on this matter written by autistic writers.

I wish you good luck with your project!!

Ana GRACIA
Barcelona (Spain)

AnaG said...

Hello Melissa,

For the publication of your book, did you try to get in touch with
Jessica Kingsley Publishers in London?
Their website is www.JKP.com; they are specialist in books on the autistic spectrum, and have already published a lot of books on this matter written by autistic writers.

I wish you good luck with your project!!

Ana GRACIA
Barcelona (Spain)

carrie schaeffer said...

hi visit my blog at iloveanautisticperson.blogger.com