Roxy Posted June 21, 2018 Report Share Posted June 21, 2018 It was a long hard battle that took over 7 years but finally I have it. Yes I am happy but equally sad that I am now officially disabled. I had the help of wonderful doctors and my lawyers, I only hope that as more and more of us get our benefits ( hoping less and less of us will need them as they find out more about dysautonomia) that it will be easier for others. I am glad for the ones who have a shorter battle than I did. The comments I heard most were you are to young, your husband makes good money, you are not really sick get a job, and you don’t need this let sick and old people get theses benefits. Crazy that was from people working for social security. I would love to be able to work and feel productive instead of basically living in a hospital or feeling home bound like I do. Sorry everyone I needed to vent and say yes I finally made it, one less stress off my list. Good luck to anyone going through this system. Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted June 21, 2018 Report Share Posted June 21, 2018 Congratulations! I know it was a stressful, hard fought battle, but an important one. I went through it 10 years ago. The more of us that fight and win, the better it will be for the next ones. When I filed, dysautonomia wasn't an approved disability diagnosis. Evidently, it still isn't. I never thought I would be disabled and not work. My life would be better if I wasn't sick, but that isn't how it worked out. I'm sorry you were in the situation that you had to endure that kind of treatment. Enjoy your down time and get some rest. They will review your case in a couple of years to see if you are still disabled. You will need to have a list of all medical appointments, dates and associated diagnosis. Keep good records so you don't panic when the time comes. I just mailed mine. It was three pages. That was sobering. It made me realize that even if I wasn't sick, the amount of time I spend at appointments pretty much makes me unemployable. Quote Link to comment Share on other sites More sharing options...
Pistol Posted June 21, 2018 Report Share Posted June 21, 2018 @Roxy - it sounds strange but -I am happy for you!! I too am disabled due to POTS. For me it took 2 years and I had a hearing with a administrative law judge. When he heard the gory details of my story he gave it to me on the spot. Yes - it is hard to be "useless" as I call it, but it's OK. I went through some depression when I first had to stop working but now I am over that. I am thankful that I can now somewhat control my symptoms because I no longer have to push myself and also I can take care of some basic things for my family ( on good days ). Be well!!! Quote Link to comment Share on other sites More sharing options...
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