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Theon: Scleroderma and Pneumothorax
This can be so frustrating at times, and sometimes depressing.

Home Sweet Home by Shelley Ensz 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.

To Contact the Author
Theon
Email: theon_smith@yahoo.com
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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ISN Story Editor: Judith Thompson Devlin
Judith Rose ThompsonJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!
New Personal Stories
Maria T: Daughter of Deceased Scleroderma Patient (Italy) He, upon looking at my mom's face and hands diagnosed her with sclerodermia, in fact he took care of her until the end...
(Italiano) Maria T: Figlia di una Paziente Defunta di Sclerodemia (Italia) Lui, come vide a mia madre disse "tu hai la sclerodermia", guardandole le mani e la faccia...
(Update) Dee B: Limited Scleroderma/CREST Syndrome (South Africa) There is so much I want to add to my original letter after reading more of other peoples stories. I am certainly not getting better but wish I was...
Tessa: Morphea The nurse just told me that I have morphea and knew nothing about it and she told me to look online for information...
More New Stories: August-November 2009
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