Advocates on Steps of Congress 2013
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Two Halves

How Scleroderma and Paraplegia can have a bright spot in the lives of one couple.

I was not diagnosed with Scleroderma Crest Syndrome until I was into my 50's, but suffered from Raynaud's and painful finger ulcers for many years. There isn't a photo of me that I am not sporting bandaids on my fingers. Finally these drove me to a doctor, then a wound care facility. I suffered through much painful debriding until finally I had to have my index fingers amputated. I am an artist and initially this procedure was devastating. However, over the years, my fingers have stiffened and become bent, but I have managed to adapt. I am now almost 65 and still draw and paint, and can diaper a grand child with some difficulty. Six years ago my husband suffered a spinal cord injury and is paralyzed just below his arms.

We consider ourselves lucky. He is the hands and I am the legs in our relationship, so together we are a whole.....or somewhat close to one.

 

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