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Joan B: Scleroderma and Raynaud's

I put them under warm water to warm them up, and they turned a blue gray color.

Linden Hills House by Shelley EnszMy name is Joan and I live in Maine. One day in 2000, I was raking leaves and my hands were really cold. I went into the house in pain and my hands looked like I had frostbite. They were white. I put them under warm water to warm them up, and they turned a blue gray color. My doctor said it was Raynaud's and that I just had to be careful of the cold.

After that I started getting upper respiratory problems every winter. My doctor gave me inhalers and by 2007, I was on prednisone most of the time and not just during the winter.

I also started with high blood pressure in 2000. My doctor sent me to a blood doctor and a pulmonary doctor in Portland, Maine. My blood doctor put me on two blood pressure medicines to open the blood vessels to my lungs and helps with the Raynaud's. My pulmonary doctor put me on oxygen.

I also had a heart catheterization done, but my heart seems okay. I have had CAT scans done too. I now have scleroderma.

In July of 2008 I had my first chemo drug called Cyclophosphamide. I have treatments every four weeks which takes five to seven hours each time. I should be done in December. Then the doctor will test me to see if it worked. He said if it doesn't he will send me to Boston for an experimental drug.

I am doing what ever they tell me to do. Good luck to you all that have this disease. Just pray a lot and hope for the best. By the way I am a sixty-five-year-old woman.

To Contact the Author

Joan
Email: Withheld by request
Story edited 08-29-08 JTD
Story posted 10-06-08 SLE

Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
LINKS
Cyclophosphamide
Lung (Pulmonary) Involvement
Lung (Pulmonary) Stories
Raynaud's
Raynaud's Stories
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Symptoms of Systemic Scleroderma
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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!

Go to Joan Elston: Systemic Scleroderma, Sjögren's, and Fibromyalgia
 
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