A Journey With Autoimmune Diseases

I was diagnosed with psoriasis almost 30 years ago. I am now 62. I had a rash on my feet, and tried OTC creams, drugs, etc, and could not get rid of it. So I went to a dermatologist, and she told me I had psoriasis. When I asked her "what do we do about it", she said,"nothing really. I will give you some cream to put on it, but you are going to develop PsA, and there is nothing to do for it." I was blown away by her response. What a nasty doctor, to lay all this on me, with no hope for help. There started my journey with autoimmune diseases.

I looked for another dermatologist, and since I live in Cleveland, I decided to go to the Clinic, thinking they would have an answer. They pretty much gave me the same story, although, they did try. Tar treatments, psoralen and light treatments, where the palms of my hands got so burned I couldn't use them for 3 weeks. Helped the psoriasis, but wasn't worth the burn pain. They also gave me a drug that caused my hair to fall out (Not methotrexate, I think it was called tegison etrinate?). So the search continued.

I finally met a sweet, knowledgeable doctor, who explained exactly what I had, and what the future held for me. She put me on Enbrel, and I was finally on my way to a plan of attack on these diseases. She sent me to a rheumatologist, and I loved him at first site! He is a no-nonsense doctor, but he listened to every word I said. He put me on Remicade, and for the first time in my life, I was in remission. I was beside myself with joy! Until the evil insurance people said they would no longer pay for the Remicade. And so my journey continued.

Along this journey, to accompany the psoriasis and PsA who were getting lonely they picked up fibromyalgia, Sjogrens disease, Ankylosing Spondylitis, and IBD to be our new friends. My spine is so bad, I cry when I have to walk or stand for more than 10 minutes. I am going to have surgery soon, to try and fix the worst of it, and give me some relief. I say this not for pity, it is just the way it is. I have an awesome husband who understands what I live with and helps me through everything. Sometimes I have to stop him, because I need to move, I need to keep going. As we all understand, you stop moving, you are gonna pay for it. Even if when we move we look like Quasimodo, the hunchback of Notre Dame! My hair going in all directions, leaning right while walking, dragging a foot, while wearing blue rubber gloves to keep my hands from cracking and bleeding! What a site my poor husband sees every morning! LOL It's a wonder he is still here!

But I will continue on this journey, constantly looking for something, anything that can give me relief. Watching, reading, listening to find that one thing that can help me after all these years. Good luck to myself, and to all of you, may we find that needle in the haystack that will give us some relief!