I may have missed something so let me know if I did.....Have you applied for SSDI?
The original paperwork can make the difference of getting approved or sent to appeal. I was approved without a lawyer and without appeal (but before AD, mine was due to a car accident and back issues and the job I had) BUT I just had to "re-certify" and after over 20 hours of someone helping me be very detailed in my paperwork (no I am not kidding 20 hours split up working together, not to mention all the time I spent getting stuff together separately)
I left them no doubt I was unable to work not only because of my back but all the new fun stuff I was dealing with.
(my almost x not so darling husband reported me as being fraudulent so this was a very extensive review, I had one prior that was one page, I want to include this so people don't panic thinking reviews get this hairy normally)
Before I go on and on abut what to do, I am reading you have yet to apply? I'm reading it that you haven't.
Also there is a thread floating around the forum about a book you can read online
http://www.medhelp.org/posts/Dysautonomia-Autonomic-Dysfunction/Free-NDRF-Handbook-for-Patients-with-Dysautonomias--written-by-Dr-David-S-Goldstein--MD--PhD-and-Linda-J-Smith/show/1356864
I want to swear it talks about getting SSDI.
If you want some ideas send me a PM, in case I miss this thread and your response.
Lastly for us "rich" people (LOL) who don't qualify for medicaid, at least in FL they DO have a medically needy program with in medicaid that after your out of pocket reaches a certain level you can have medicaid kick in for that month (Tonya if you are reading this I bet this is what you have, it was a hospital visit that got me this and it's good for a year until you have to re certify, and one hospital visit can do it and the hospitals want to get paid so they do the "dirty work" for you).
For me to meet my monthy out of pocket expenses I have to get to the point where I would have a little more then $100 a month to live on for both myself and my daughter.
Good Luck!
Kerri
OHHH Call around your local area and see if they have a free clinic, we have an amazing one here, it is not government sponsored, I know someone with a not common medical issue and she ends up seeing the best of the best, the local big wigs here like to say they donate their time to the clinic to "pad" their status.