A woman with scleroderma named Karen Sipe contacted me through this blog and we have been corresponding by email. I have permission to excerpt some of her story for you.
My husband and I own a small web based business and merged it with a manufacturing business my grandfather started, which my dad turned over to me in 2000. I am 37 and was diagnosed at 23 [with scleroderma], after moving from San Diego to Wisconsin to go to nursing school with my boyfriend at the time after getting out of the Navy and getting my EMT-1 certification. I had to change my major to psychology. My Raynaud’s was out of control and I could not keep up with the schedule of upcoming clinical rotation. I ended up being hospitalized and lost part of my thumb. I did learn how to take precautions with the cold, but I was also in great denial and did not take better care of myself.
I was diagnosed with Sarcoidosis in May of 2007. I was exposed to quite a bit while in the Navy. They had just started allowing women on ships and another girl and I had to earn our safety gear by showing we could work just as hard as the males in our division. I don’t know if she developed any problems…. My son was born in 2004, 2 months premature. I developed HELLP Syndrome and lucked out by being referred to an excellent hospital in San Diego where 32 weeks was considered full-term. My son attends daycare full time and is doing well. He tries to straighten my fingers for me and I think it is really cute how he is trying to understand what is going on with mommy.
I have a history of many experiences basically fighting for care from the VA in the late 1990’s and recently as well as mainstream medical care. I feel that some of my past and present medical problems, such as frequent digital ulcerations and limited range of motion, could not have been completely avoided, but maybe the frequency could have been lessened had I learned to advocate for myself earlier. There are two things I am working on, the first is to relay experiences briefly. I have a tendancy to be wordy. My goal is to share what I have learned without dispensing advise. Most of all, I would like to raise awareness.
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