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Sissy: Spouse of Progressive Systemic Scleroderma Patient

What do people do who are unfamiliar with medical terms, insurance problems, and changes in the disease process?

Daisies for Sissy by Shelley Ensz My husband was diagnosed with systemic scleroderma in November 2001. He had felt tired in August, and his hands became swollen in September.

Then he developed sores on his fingertips in October. It took two months to see a rheumatologist. He was put on a medication that made him very ill, so it had to be discontinued. He started a study medicine with the University of California in Los Angeles (UCLA), in September 2002, and so far here has not been a stop in the progression of his disease. It seems there is something new every week.

The latest is that he needs a special bed to prevent bed sores in the areas where his bones are not padded with normal tissue, since he has lost so much weight. He must take a laxative each week since his digestive system is slowing down. In the last two weeks we have obtained a wheelchair because he gets short of breath, a walker so he does not fall, a riser for the commode with arms so that he can get himself up, a seat in the shower because he cannot stand long enough to bathe, and a lift chair as he cannot get himself up anymore.

He cannot bathe, dress himself, or cut up his own food. He cannot wipe himself after using the toilet. This causes him great distress, for he was always so private about this. His skin is hard all over, his fingers are frozen almost closed, his legs are bent at the knees and hips and he cannot finish a can of soda because his head no longer flexes enough to drain the can.

He has been hospitalized with an infected joint in his finger requiring five days in the hospital and a month of home intravenous antibiotics, followed by oral antibiotics. After his HMO (managed care insurance) refused to pay for his brand of heartburn medication, he woke up with left arm pain and indigestion and had to go the emergency room. The diagnosis was esophageal spasm, and it could have been prevented by the right medication.

We are hoping that the study medicine will help, but it is hard to maintain hope since he continues to decline so fast. He lost a brother to scleroderma, but his brother lasted twenty years with it. The disease has been devastating for both of us, but the gyrations we must go through to receive decent medical care is almost as devastating. I am a registered nurse and I know the system, at least some of it.

What do people do who are unfamiliar with medical terms, insurance problems, and changes in the disease process? The lack of understanding, the constant problem solving with insurance coverage, the cold-shoulder care from physicians, and the daily process of enduring this disease has gotten to both of us. With the help of friends and family we will make it through. My heart and prayers go out to those who are suffering the same trials.

To Contact the Author

Email withheld by request
Story edited 10-29-02
Story posted 11-3-02
Vol. 2 matching edits 12-20-04 SLE

Story Artist: Shelley Ensz
Story Editor: Judith Devlin
This story is featured in the book
Voices of Scleroderma Volume 2.(See Betty's story in the Caregiver's chapter.)
Ineffective Treatments: Penicillamine
PDF Brochure: What is Scleroderma?
SCTC: California
Systemic 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 Skye: Localized Juvenile 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)