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Old 03-15-2003, 12:30 PM   #1
Junior Member
 
Join Date: Jan 2003
Location: modesto ca usa
Posts: 15
sandy b HB User
Smile just droppin in to say hello

Hi everyone, it's been awhile since I've been able to get back here and see how everyone is doing. My 19 year old daughter got married a month ago after only giving me 3 weeks notice to plan. They got married in the same chapel in Vegas that her dad and I got married in 30 years ago. It was fun, but extremely tiring. The steroids and pain pills kept me going.ha

After we got back though she started getting very ill.
Her hair has fallen out and she finally showed me her
leg. Since she got married, my husbands insurance dropped her and I have to get her on Medical asap. From her thigh to her knee is a purple patch of thickened skin. I took her to a doctor who said it was the worst she'd seen on someone only 19. I cried all the way home. It took us 10 years to have her and I could never have anymore children and now she has to go through this too. At least, she won't have to go through 8-10 years of being considered nuts. I read an article about a tribe of Choctaw indians around the Poteau, Oklahoma region we are from who they found carry the gene for scleroderma. Has anyone else read this? I have lupus overlapping with scleroderma and dermatomyotosis. I just wish we had more informed doctors here in town. I just lost a friend New Years eve to scleroderma. She was waiting for a heart/lung transplant. The doctors here kept stretching her throat because she couldn't swallow, but never told her what she had.

I've been pretty down lately; I have a fluid cyst vs fistula building up under my abdominal scar that no one will touch. I talked to my insurance carrier and they told me that if it keeps up to call an ambulance, but the hospital in town no longer takes my insurance.
My pain mmgmt doctor is not going to take it anymore either, so I don't know how we'll get through this one.
Guess we'll have to go to Mexico.ha

Well, just wanted to say hello, and that I think about you all from time to time. Hang in there and just take it one day at time.

 
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