My name is Marie, and my husband died one and a half years ago from progressive systemic scleroderma. When Dean and I married, he was a healthy and fit man of thirty-three, working in the sand and gravel industry.
After our first year of marriage, he became increasingly more tired and achy as the days passed by. It took one year of multiple misdiagnoses before it was determined that he had scleroderma. He kept on working as he progressively got worse.
Scleroderma affected every part of his body. Dean was a strong-willed 'redneck' man and was never able to accept the severity of his disease. We went through a half dozen doctors until we found the last set, and they took good care of him until the end. For me, the hardest part was watching him suffer in pain and not being able to help him.
We tried numerous things to help him, from holistic medicine to an electrical stimulator placed in his spine to generate blood flow. Poor Dean was stuck and tested so many times then. Towards the end, he was improving. We placed him on a TPN: twenty-four hour IV bag to feed him and help him gain weight.
He started moving around again and we took his kids to San Diego for a weekend at Sea World and the beach. Upon our return two days later, he contracted an infection. The doctors told me he had a staph infection, spinal meningitis, pneumonia, and his heart was going ballistic.
Four days later he died quietly and peacefully while holding my hand. He was finally free from suffering. Dean left me as well as his two children behind, but we have survived.
I can only say to other loved ones that, indeed, it was the hardest thing I have ever gone through. Just hang in there and let God take you through it.
Of the six years I was married to him, he was healthy only one year. But I am so glad and proud to have been his wife.
Story posted 1-20-01
Story edited VH1: JTD 8-21-03
Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
Lung Involvement: Pneumonia
TPN: 24 hour IV bag
Types of Scleroderma
Voices of Scleroderma Volume 1
The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!
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