Barbara or "Bobbi" as she liked to be called, was diagnosed with CREST in 1990. She had major joint pain on a regular basis along with other symptoms, bowel problems and a lot of pain. After doing some reading about CREST syndrome she (and eventually her doctor) realized she had scleroderma. The worse seemed to have started with having a knee replacement, then a new knee cap, as they put the wrong size in the first time. Healing was very slow for her. As time went on she developed a sore on her elbow that did not heal, so they removed part of her elbow. Her fingers started getting sores that would not heal, so five of her fingers were amputated, at different times.
Then she had a second knee replacement, the other one this time. Another sore started and would not heal, so again the doctors decided to remove the parts of her that did not heal. She was on so many medications! She was placed in a nursing home after that knee surgery. She started to get involuntary shakes in her arms and legs and was embarrassed by this. Her kidneys and liver were starting to fail also. She developed a bad infection on the knee so they decided to remove the artificial knee and put spacers in so that maybe the infection would go away.
Mom then had a colonoscopy and when she came out of recovery the next day her small intestine started to bleed and they could not stop it. She was put in intensive care, and given five units of blood. The doctors told my family that we should decide if she would want to keep fighting or not.
After so many years of constant pain, she had been saying all along that she did not want to live like this. So we stopped everything; the pills, the blood, everything, and let her body decide when to go. She was kept comfortable on pain medication until the end. The infection finally got to her lungs. She died with her husband, her two daughters and her son at her side.
My mom was the strongest person I have ever known, and mom, I hope this helps in some small way of what you wanted me to do for you. There are so many details only you could really explain. I love you and miss you so much.
Email: [email protected]
Story posted 11-06-03
Email address posted 07-06-05 SLE
Story Artist: Ione Bridgman
Story Editor: Judith Devlin
Gangrene and Amputations
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Symptoms of Systemic Scleroderma
Types of Scleroderma
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ISN Artist Ione Bridgman created original artwork to illustrate this page. She is 90 years old, and lives in New Zealand. Her lovely paintings illustrate many of our pages and the covers of our Voices of Scleroderma Book Series.
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