Susan's mom

The first thing I want to say to all of you who have scleroderma is that I pray for all of you everyday. My mother died in November of 1998. She was diagnosed with scleraderma in 1986 and had previously been misdiagnosed with arthritis for years prior to that. When in 1986 an ANA test showed that she had either MS, lupus or scleroderma, her doctor sent her to Pittsburg, PA for further testing (we live in Upstate NY). My mother was a very brave and beautiful woman. She never once complained or cried... instead she fought hard to stay alive waiting for medical science to catch up with her disease. I am sure I do not need to tell any of you what she went through... she traveled far and wide chasing after every new treatment that became available. Many of the treatments were as painful as the disease itself, but that never stopped my mother. Mom went on macrobiotic diets, had kelation and another treatment (the name of which escapes me now- photo kinesis I think). Her medical coverage refused to pay for her treatments as they were all considered experimental. My mother finally stopped chasing after a cure because she did not think it fair to spend all the money she and my dad had carefully put away for their retirement trying to keep her alive. My mother had adverse reactions to every pain killer her doctor put her on... and her doctor was trying so very hard to help my mom... there was just nothing out there to help her. You had to be blind not to see the pain my mom endured, but my mom never let you know how badly she was suffering. The disease was cruel- my mother had parts of her feet removed and fingers amputated... she had jaw implants put in when her own jaw disappeared... she lost one vertebrae after another in her spine, lost her hips and her shoulders, her head shrunk, her ears grew and her teeth moved down into her throat. As excruciating as her pain was and as sick and debilitated as she was, she got out of a sick bed to play Rummy-O with my then very young son. 

Susan - aggiesue@localnet.com
 
  

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