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Theon: Scleroderma and Pneumothorax

This can be so frustrating at times, and sometimes depressing.

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: [email protected]
Story edited 03-19-08 JTD
Story posted 04-02-08 SLE

Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
LINKS
Disability
Heart (Cardiac)
Heart (Cardiac) Stories
Lung (Pulmonary) Involvement
Lung (Pulmonary) Stories
Raynaud's
Raynaud's Stories
Skeletal Involvement
Skeletal Involvement Stories
Skin Fibrosis
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Sclero Forums *Online Support Group!*
Symptoms of Systemic Scleroderma
Types of Scleroderma
What is Scleroderma?

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith 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!

Go to Theresa C: CREST/Limited Scleroderma
 

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.

International Scleroderma Network (ISN)