April 29, 2009 2am I awake in pain worse then my most horrible nightmare. I tried to get out of bed and realized my arm would not even lift the thin sheet i had on, I was terrified. The neighbors finally heard my screams and call 911. This was my welcome to RA. For those that like numbers my rf factor was 619.5, sed rate 155, ccp >250. I was lucky and got SSDI within 6 months on my first try so money became less of an issue but I had no insurance, so finances stayed tight. My first rheumatologist was great, she had RA herself including the ulnar deviated fingers. She explained things to me so I could understand them, not that I am stupid but in shock from the drastic change in my life. MTX is not an option cause of a non-alchohllic fatty liver with elevated liver enzymes. So, we tried the sulfasazide (spelling error). It did nothing. At this point I ran out of savings and had to be referred to the clinic. Continued on 80mg prednisone daily and not able to do simple tasks. Multiple trips to the clinic, and frustrated, like wrestling a polar bear to get information out of these people. No change in treatment. I am a +tb converter, but no history of tb. They wont give me biologicals. Go January 20th to see a different (4th) rheumotologist, wish me luck he is willing to try something besides the prednisone.
I have not gotten any adaptive devices, simply if I cant do it, it doesnt get done. This site has made me want to fight again. But fight differently, I might not be able to walk the mall but I'll get a wheelchair and go enjoy the mall. I will get and use ever device to make me independent again. I might not be able to do alot of things, but my life isn't over