I was diagnosed with scleroderma in 2006 during my stay in the hospital at which time I was admitted for pneumothorax. My first bout with pneumothorax was in 1985, and the diagnosis was blobs on my lungs.
In 2005 I noticed that my hands were getting cold, and turning blue. I went to my doctor, and she diagnosed me with having Raynaud's.
In 2006 again I was admitted into the hospital with pneumothorax at which time I was diagnosed with scleroderma, and pneumothorax again in 2007.
I experience from moderate to severe pain in my shoulder's, knees. hips back, and legs. I get an upset stomach and sometimes vomit. I have heart palpitations, with my heart pounding very hard, fluttering, and missing a beat. I get pains in my chest. I am on oxygen all the time. When I get pains in my chest, and I get the palpitations, and the fluttering I get short of breath. This can be so frustrating at times, and sometimes depressing.
I try to talk to my husband about my condition, but I also need to talk to someone who really understands and knows exactly what I am talking about.
This is very hard for me, because I was a very active woman, and then suddenly I am totally and completely disabled. I had a wonderful and challenging job taking care of someone who is developmentally disabled. I had been working with her for five and a half years. She was like my baby, and to have to leave her was depressing enough and deal with my illness is a little more than I can take.
I would like to know what I should expect to happen in the future as this disease progress. I have noticed a discoloration on the back of my hands, wrist, going up my arms, on my knees, and it is starting on my face. I have also noticed the texture of my skin has changed some also. In some places it feels a little hard to the touch, and I can't pinch my skin.
If I had just one wish I would wish for a new body. I wouldn't wish this on anyone not even my worst enemy.
Email: [email protected]
Story edited 03-19-08 JTD
Story posted 04-02-08 SLE
Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
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SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.