shelleyb66


You don't have to be old to need specialists and Medicare and Disability when there are diseases like Scleroderma out there! I am now 40 and have Diffuse Scleroderma, Polymyositis, and Raynaud's.

I was diagnosed three years ago, finally, but began having the symptoms and problems about six years ago (2000). I chased doctors for three years to find out what was wrong with me. I heard everything from stress, depression, mental illness, muscular dystrophy, MS, cancer....you name it! Finally I got to a dermatologist who strongly suggested I "might have Crest or Scleroderma". I went to a new Rheumatologist who looked at the original blood tests and he found both pathological and physical evidence of Diffuse Scleroderma. I had a muscle biopsy that diagnosed the Polymyositis.

When I first began the Rheumy's treatment of Methotrexate and Prednisone, I had been on huge doses of Prednisone and weighed 300 pounds. I couldn't walk, had constant diarrhea, major GI problems that caused me to vomit daily, as well as lung problems and heart arrythmia. I was a mess and in pain. I was also a mom, wife, full time upper level Executive working 60+ and was taking night classes as a full-time student. No wonder I was such a mess.

I got terminated from my job within a month of my disclosure of my illness, but I couldn't find any way to litigate that whole thing...in my state there is 'at-will' employment. I continued going to school, taking off when I needed to for my health. Finally I was accepted for SS disability, and eventually this year got the Medicare as well. Finally I feel like my life is turning around a little.

In the mean time, I have been on 20 mg Methotrexate and my CPK's have fallen from 14000 to 180. I can walk and get off the toilet on my own again *YEEHAW*. I still have the daily struggles of the lung, GI and other problems. I got my BS in Business Administration, but haven't felt well enough to consider working. My husband and son are wonderful and have been there to help me all the way.

shelleyb66@verizon.net
  

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