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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 Cytoxan. 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
Cytoxan
Lung (Pulmonary) Involvement
Lung (Pulmonary) Stories
Raynaud's
Raynaud's Stories
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Symptoms of Scleroderma
Types of Scleroderma
What is Scleroderma?
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
Alana: Scleroderma (Peru) I cannot open my mouth completely, I have lost strength in my hands, I have breathing problems, my face looks different, my skin is really tight and I have lost my appetite...
(Español/Spanish) Alana: Paciente Nuevo con Esclerodermia (Peru) Le dije que ya no podía abrir la boca completamente, he perdido la fuerza de las manos, tengo problemas respiratorios, mi rosto está diferente, mi piel está dura y he perdido casi el apetito...
Kristy C: Generalized Morphea The only place where I do not have any morphea is my face, which I am very thankful for...
(Update) Raymond: Surviving Son of Scleroderma Patient On October 19th, the Herbert family lost another member of the family to scleroderma. My uncle Edmond has passed on...
Sharon H: Scleroderma/Morphea It has been thirty-two years living with this and it has progressively gotten much worse and has spread...
Teena: En Coup De Sabre My mother and I went to Johns Hopkins Hospital. They did what was called 'Grand Rounds' where about fifty doctors were looking at me taking pictures and videotaping me...
More New Stories: November 2008
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