Good morning all,
I've been on here in the past. When I made my profile I didn't know this was primarily for the British Until it was brought to my attention. I have looked for support forums here in the state but I have had no luck. You people on this site are generally caring good people. There is a proactive approach you all give each other that I couldn't find in any site U.S. based. So here I am asking to be excepted and looking for advice.
I have been diagnosed with AS over ten years ago with imflamed bowl disease. My old rhuemy started biologics and anti inflammatories. I tried Enbrel first with great results was in remission for a year before my lymph node in my neck swelled up to the size on a golf ball. I had surgery to remove it and had to stop the Enbrel to solve the problem. Then we tried Humira for a year and a half with no luck. So my rheumatologist decide to give the Enbrel another shot just at a lower dose. Everything was going great until the Enbrel started a severe inflammation of my inflamed bowel disease which went away once I stop. So the last option was to go through pain management. Everything at this time was relatively quiet until a bad flare up that has not let up from the last 3 years. During the last 2 years I have had over 18 epidural shots and 5 nerve ablations in my sacral and my back. I fired my rheumatologist because of the lack of treatment and results. During this time I was complaining about my feet and hands turning purple accompanied by tingling and burning sensation. On top of that i developed dry eyes and mouth. I lost vision in my left eye due to it. My new rhuemy has started me on remicade infusions at 8 viles. On top of the AS and IBD she has diagnosed me with Sjogrens and Scleroderma. I fear that things are going bad as within the last six months my whole extremities turn purple and cold, which my rheumatologist said could be circulatory caused the scleroderma. The remicade has helped a bit but I still am very crippled. We are discussing adding MTX and have to get a bunch of testing done to make sure my IBD and liver can handle it. With the progression that has taken place in the last couple years I feel as if the end is drawing near. My mind is strong but my body is telling me different.
My family is been extremely supportive but I have not told them of the new diagnoses and what my body is telling me. I feel as if it will be easier if they don't know so there is less of a pitty party. I posted a while back because my parent and other family members did not seem to understand that i could not do things because of my condition. All of your advise was very helpful and it did work. The everyday struggles have got the best of me now. Is there anything else that can be done?