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Marie B: Progressive Systemic Sclerosis

I am almost three years into this disease, without seeing any change for the better. The doctors say they have never seen such skin tightening, but I am lucky to not have had any organ involvement yet.

The pain in my arms is so bad that I have to take large doses of pain killers, and this barely helps. I do not know how much tighter my skin can get. It is crushing the blood vessels and my arms and hands are just about frozen. I am still able to write and use the computer, but I am slowly losing that ability.

I have tried chemo, cytoxan, and cellcept. Nothing has helped. I have been to pain clinics and therapy, but nothing has worked. I have a lot of bowel trouble (bleeding, nausea, vomiting, stomach pain and diarrhea). I also have trouble with swallowing and have lost a total of seventy pounds in two years. I am all bent over at the waist and have to use a walker or a wheelchair to get around. All the bones in my face are very painful to the touch, and my mouth is very sensitive to spicy or carbonated beverages.

To say I live in misery is putting it mildly. If the weather is lousy, it is a good bet that I will have to stay in bed for the day. I would love to hear from someone that is as sick as I am. Just to know that I am not alone would help. This disease has many faces, so I hope to hear from others who are going through the same thing.

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ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

ISN Story Editor: Judith Thompson Devlin

Judith 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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