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Joyce T: Scleroderma with Pulmonary Hypertension

I am finding out that it seems doctors are never in agreement with many things.

Peach Flower Photo by Shelley EnszI have recently been told I have scleroderma. It was told to me by a pulmonary specialist at UC Davis. He said it showed in my blood work. I also have pulmonary hypertension which shows on echocardiograms.

I am finding out that it seems doctors are never in agreement with many things. This is frustrating to me. I have learned that keeping watch on the issue at hand, is the way the disease or many diseases are taken care of. I am not a medication person, but do take pills for all over body pain and anxiety.

Recently my right hand has been feeling swollen. My joints have been enlarged for the last eight years.

My pulmonary doctor ordered a medication for the pulmonary hypertension (PH) but my insurance denied it. Some of my issues are better and worse at times.

My family also carries a condition of chiari malformation. I lost my oldest daughter to this in 2000. Then found out I and my other six kids have it also. My mom has rheumatoid arthritis and has a lot of pain. So I guess my family is so lucky to have all these!

It seems I spend so much time on the phone to doctors, either for myself or one of my kids. I have learned to get very involved in diagnosis or anything told or recommended, since the loss of my oldest Jennifer, and regarding issues with the rest of us and the experiences of medical care.

To Contact the Author

Joyce
Email: [email protected]
Story edited 05-06-2010 JTD
Story posted 05-06-2010 SLE

Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
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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!

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