Thank you for your suppportive response. As you know, with this disease, we all need all the support we can get. Right now I am on prednisone. I have read you complaining many times about the steroid weight gain. I can totally relate. I feel like an oompa loompa. My face doesn't even look like my own any more.
I've had three rounds of IVIG. The last one didn't help at all. I had the 4 plasma pheresis in the hospital but because of the blood clot they say they can't do any more. I had a thymectomy in 2005 which put me in remission for a few years. No I'm feeling like there is nothing left to try other staying on the steroids. They prop me up a bit but not to the point that I am fully functioning.
I want my life back so bad. I am facing the possibility of going on disability and I really don't want to. I am a single woman and live alone. For me, right now disability feels like being half dead. Just don't know what else to do. . .
Martha