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Everything posted by ChefKat

  1. ChefKat

    Really dry, rough fingers

    Hey. My fingers are just like what you described. I have lost a ton of feeling in my fingertips. I have these weird thick lines at the tips where my nail stops. It almost looks/feels like the skin is being pulled back from under the tips of my fingernails. My fingerprints look "thick" I guess I'd say. Also, I could probably stick a saftey pin through the extra skin on my fingertips and not feel a thing. My fingers themselves still alternate between HUGE- swollen and red and TIGHT- very shiney and smooth feeling. You know the top bend in your fingers, like right below the bottom of your nail.. That area seems to be getting real shiney too. That skin, leading up to the bottom of each fingernail where the cuticle meets the nail is where it's reeeally smooth.
  2. ChefKat

    Fed up with it all.

    Hey guys. I don't post very often but I feel like I have to. I'm young. I'm only 24. I have Limited SSc. I have kids. I want to go to college VERY badly. Is Scleroderma so rare that not a single person out there has heard of a scholarship fund for us? I'm going crazy staying at home all day. I want to do more with myself. I've heard of scholarships for people that are simply left-handed! I feel broken-handed most of the time. Is it that I'd be a poor investment since I might get a lot sicker? Does anyone know of someone or something that can help me? I feel so so depressed. My body has become my prison and my doctors think I'm fine. I can't even open my fingers all the way and they say I "show no signs" of sclero besides the blood work. What am I supposed to do? I enrolled at a state college before my diagnosis and actually tested out of all the first-year math classes they provided. I was first-chair flute player all through high school. Now I can hardly hold the thing. I have spent all day searching and enrolling with the scholarship programs on the internet, including the ones provided through this site. My fingers feel like popsicles. My wrists and forearms ache. My whole body aches. I feel like nobody believes in me. I feel like the only thing the sclero hasn't taken from me is my children. My daughter is my only biological child. The acleroderma started after my pregnancy. Is that IT? Am I 24 and already a complete "has-been"? With stories about what I USED to be? Drowning in housework, with nothing to use my brain on. Can't anybody help? ChefKat
  3. Ced- I hurt a LOT too. My first physical therapy appointment is this afternoon actually. I know we'll just be doing paperwork and junk but they'll be working with me in the hospital's heated pool pretty soon. I can tell you if it helps me.. I'm scared that they might over-work me but they swear I'll be fine, even better maybe. I was in the ER yesterday on IV for pain meds because, even though I take a lot at home, I woke up and couldn't walk. And that's not even what the meds are for!! I hope you find more relief soon. :) Also, do we know anything about that glucosamine condritin stuff? I'm sure I spelled it wrong. Does anyone know if that would help with joint mobility without reacting to all of our other meds?
  4. ChefKat

    ANA blood tests

    I know I have been diagnosed with CREST and I am ANA positive and have the centromere antibodies. No other positives though. Just weird ranges with my nutrition and some of the usual cbc stuff.
  5. ChefKat

    What Is/was Your Job/career?

    I worked at an auto parts store for 4 years. The disease hit right after my pregnancy, when I became a stay-at-home mom. I don't suppose all the silica dust in the shop helped things.. I was always in the back room while the rotors and flywheels were being turned. Are there any reports of lawsuits between employers and Scleroderma patients, or is that not even possible because there's no specific known cause? I'm not out to sue anybody at the moment ;) but I DO wonder about that auto parts store... Elizabeth
  6. ChefKat

    Muscle Spasms?

    My mom told me one time that she had leg cramps at night and the doctor recommended quinine. It's something you can find in tonic water and it really helped her to get some sleep! Not sure if it works but you might want to bring it up to the doctor and/or do some research on it. :)
  7. ChefKat

    Tattoos And Skin Involvement

    Hey everyone! I'm that friend that Jen was talking about. Man you guys have some great answers! I usually stick to my other online scleroderma support group but I couldn't believe what great advice you all had to offer! I'm still pretty iffy about the tattoo thing, as I've always been more of a piercing gal myself, and I think I'll hold off for now. I was only DXed in Jan. of this year and I need to get a better grasp on this whole skin-changing thing. Someone mentioned that the smallest cuts can turn into the biggest, weirdest scars and that is SO true. I'd hate to see what a tattoo could do to the skin of someone with Scleroderma. The other thing is simply that a tattoo is PERMANENT. While I may think I know myself well enough as a person to have something inked on my skin right now, who's to say I'm gonna like it when I'm a little old grandma!! (I'm 22, by the way...) I think I'll stick to the piercings for now. The scleroderma hasn't caused any problems and I've had many piercings over the past 8 years... Belly button top and bottom, 2 inches above the belly button through the skin, 2 inches below the belly button through the skin, one on my chest (looked kinda like a necklace without a string- it was cooler than it sounds), my nose, my lebret (below my lip), both sides of my bottom lip, both eye brows, 11 in my ears, and one through the bridge of my nose. HAH I guess I sound like a weirdo but I never actually had all those at the same time; they're just something I had at one point or another when I was younger. All I have now are the bottom of my belly button, my ears, and the bridge of my nose. I sure could do without the little scars they left but when you're really itching for a change, a piercing leaves MUCH less of a permanent impact on the skin. Sorry I guess I'm kinda talkative today but all I'm getting at is this- my hubby can stick with the tattoos and I'll stick with the piercings for now! Thanks for all your great answers!! :) Elizabeth