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Karenlee

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Everything posted by Karenlee

  1. Hi Patty, What benefits did you get from the Plaquenil? Did it help with stiffness? Thanks. Karen
  2. Quick (temporary) fixes for what ails us

    Bunky I like the gloves idea. The tips still stay warm though? I'll have to give that a try. Thanks
  3. Prednisone update

    Thanks Bunky, I sure hope it works as well just without the nasty side effects.
  4. Prednisone update

    Updating again: I am on 4 mg every other day until Sat, then I'll be off the prednisone. I feel the effects already and pretty harshly. Not sure if it's because I had that temporary releif for those 5 days or so but sheesh! When I woke up this morning I was stiff as a board. And my back was killing me last night when I was in bed. Anyway, that's my whining for the day Lol Just needed to vent. Karen
  5. coffee elimination

    Just want to point out that it was my Dermatolgist that said to stay out of the sun. My Rhumetologist never mentioned the sun, just the coffee, sugar and salt. I imagine it's internal vs. external. So, the more doctors you see, the more confused you'll be. :P You just have to remember to mention what one doctor says to the other and see what works best for you. I live in New York on an Island surrounded by beaches with brutally cold winters. Seems a bit cruel to me to stay away from the sun/beach when the summer finally rolls around. I guess a good strong sunblock, big floppy had and an umbrella would do the trick. :D Karen
  6. Hi Jennifer, Are you feeling any better? I'm hoping so. Karen
  7. How careful do I have to be?

    Mary-- that heating pad was originally purchased for my back, then when my space heater died I thought "hmmm this could work" haha. But yes, unless you are in the throws of a Raynaud's attack (in which case I'll wrap my hands in the pad) it seems to work best if you keep it on your tummy area. And um, what are hot corn bags? Tru---well since it's getting warmer out you may not need that blanket until the fall :)
  8. achy, swollen hands

    Bunky, I do have swollen hands, (also the sausage fingers you speak of lol) however they don't turn pruny. Maybe you should get to your doctor since this is new for you with the aching and puffiness. When I had a doppler done on my hands it showed the blood flow and inflamation. Maybe ask him/her about having one and maybe some x-rays to see what's going on. Hope you feel better and get some releif from it. Karen
  9. Ambien Nightmare

    relicmom, that could very well be, that the generic form had something to do with it. Although I beleive all active ingreedients have to be the same as the name brand. Its a tough one to figure out. I have been taking Lunesta, and it works well. Maybe look into switching? Oh and whew that you can't overdose on the Ambien. What a releif that is. Karen
  10. Sorry your not feeling well Jennifer. Maybe you should splurge and go get that massage. Karen
  11. New diagnosis/New Member

    Welcome to the forum anymom. I was/am freaked also, you are not alone. Linda is right, please don't go surfing the web, it will only upset you. Just follow thru with your doctors. There are so many variants to scleroderma that you will drive yourself crazy. This is a warm safe place for you to come and talk, ask questions, and just vent. Karen
  12. Doctor Needed

    smac, I love your positive attitude. It inspires me not to get so into the disorder and get me down. And bravo on your motto. I may have to steal that one from you! :) My nephew has Autism. My sister has been thru the ringer trying to deal with all that comes with it. She always insists " he is not autistic. He has autism". Another motto that I beleive in. We should not define ourselves as people by our disorders. Anyway thanks for sharing. Karen
  13. What do you do to lift your spirits?

    Hi smac0719...funny you mention the manicures. I go for regular pedicures and refuse to get a manicure for the same reason you stated. My fingers are way too sore and my cuticles infect very easily so I wouldn't let anyone near my hands. Everytime I go in though, they tell me my hands look terrible and that I need a manicure. They just don't get it I suppose.
  14. Wow Sheryl that's great! Congradulations and thanks for all you do for this forum. :)
  15. sore gums

    Oh SMAC don't you just love when they look at you like that? "You poor thing you". That makes me crazy! Way to make us feel worse and more scared than we already are. <_< Anyway, on to the gums topic, I don't have gum sensitivity but I do get painful sores in my mouth on the inside of my lower lip. I have one now that I inadvertantly keep biting which isn't helping it heal. Gotta stay away from salty food until it heals.
  16. How careful do I have to be?

    Hi Catherine, I agree completely with those who talk about core body temp. I have a heating pad that I keep in bed with me and place it on my torso. That seems to help my hands and feet stay warm. I have an ulcer on my right hand on the knuckle that has been there for months. I sometimes put neosporin on and cover it with a bandaid overnight, and that helps heal it quicker than it would on it's own. Granted, it's healing very slowly, but healing non the less. Do whatever you can to keep your hands warm and toasty. Even if you look silly like us going grocery shopping with gloves on. Better a funny look than cold painful hands. Karen
  17. Was it worth it

    Hi Celia, I have never had a flu shot. (I'm too chicken :P ). I did get the flu this year, it lasted around 5 days and knocked me for a loop. Karen
  18. Had my bronchoscopy today...

    Hi Lisa, Sorry about your having to go thru that test, I don't know if I'd have been able to do it. You are so brave. Hopefully the erosion will heal quickly. Did the Dr's say they will check you again to check the healing progress? Karen
  19. Frozen Shoulder

    Sheryl, Sorry to hear your having to face such tough decisions. I have not personally had shoulder issues, nor have I had any cortisone shots, so I cannot really give you advice, but good luck, and I hope whatever course of treatment you and your doctor decide on brings you releif. Karen
  20. Prednisone update

    Hi Bunky!! Thanks for asking. Well I spoke to my doctor and am being tapered off the Prednisone this week. They just weren't agreeing with me. I'll be completely off by Sunday. I only took one yesterday and I can feel the stiffness returning already :( Its amazing how fast this stuff works. I remember within the first day or two feeling so much releif from the stiffness, and now after 2 days of only taking one I feel stiff again. On the upside, I do have my eye appointment on Monday, so if the eye doctor gives the go ahead I can start the Plaquenil. Until then you'll all just have to put up with me whining :P I swear I can hear the Sanford and Son theme music in my head when I get out of bed in the morning Lol
  21. Prednisone update

    Thanks for the information Shelley. Not sure what to do now. I called my Dr's office but they are closed.
  22. A cramp in my lip?!

    Yeah, the cramping seems to be common amoung us. I wonder if it's a hernia from sclero? I asked my Rhumys asst. about it and she said it should go away when I start the meds so we'll see. B)
  23. coffee elimination

    I agree, ocean water definitely has healing effects. When my cuticles get infected I would go down to the beach and soak my hands in the salt water and it was very helpful with the infections.
  24. Prednisone update

    Tru, You are right, I never imaginied I'd have an allergic reaction since I'd been ok taking the Prednisone for 5 days with no trouble. It just hit me out of nowhere. I'm down to 1/2 doses now so just hoping that won't trigger another attack. This stuff has seemed to help me so much with my mobility I would hate to have to stop taking it. Yep, got the OTC on hand now and lots of oatmeal in the pantry.
  25. Doctor Needed

    Hi a sharpe 1 and welcome to the forums. We all know the feeling of being frightened and not knowing where to turn so you have come to the right place to find answers and comfort from a wonderful bunch of people. I am fairly new, so I may not be able to answer all your questions, but I am here to listen and give you what information I do have.
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