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truman

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About truman

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    Gold Member

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  • Location
    NJ
  1. Recently diagnosed with CREST

    I was diagnosed with CREST in 1991. Not the end of the world for me but I do have my bad days. I have all of CREST letters, each of which stand for a symptom. I did lose a large toe in 2007 due to Raynaud's Syndrome so you must be careful to cover up. A prescription medication works for the heartburn. I'm in the "donut hole" (of health insurance) at this point and cannot afford the medication. I purchased an over the counter substitute which I will have to use come December so I'm hoping that will work. If not, with the new health care program I can get my other medication back in January 2011. Don't fret, it's been pretty manageable for me. I do get tired easily, the legs don't seem to want to climb the stairs but all in all, there are others I'm sure worse off.
  2. Calcinosis?

    Yes, it's calcium deposits. I have them on my feet, arms, ears and now thumbs. I was just at the doctor about this today. Thing is that once the little rocks pop out, they fill up again. Just one of the perks of this disease.
  3. New With Questions

    Hi Margaret: Alive and well and the foot finally healed a month ago due to tremendous efforts of the wound care center. Still have my problems, steps a real difficulty but I'm getting there. Thanks for asking. Tru
  4. Avoiding medical retirement

    Is DLA the same as SSD? I'm not familiar with the term.
  5. Disability

    Lin: I do have that new ruling Nan sent to me if you need it. Just send a PM to me with your personal email and I'll attach it. Seems I can't attach on PMs sent through here.
  6. New With Questions

    Hi Margaret: Thank you so much for asking. I'm quite alive and kicking. Still nursing the amputated area with quite a remarkable recovery in just the last three weeks. I attribute it to my last operation in October and finally getting of Prednisone (pat on back) last month. I hope all is well with your son and that you're starting to enjoy the intermittent warm days between these summer months.
  7. Costochondritis?!

    Razz: I've gotten that within the last month. I attributed it to an allergic cough and the dry heaves from IBS. I thought I just strained my chest muscles! I could barely breathe. I tried a heating pad which made things worse, then ice packs. The ice packs worked wonders!
  8. Itchiness and Sclero

    Angela: Same here. I get itchiness if I haven't had a water pill in a while. Also when my skin begins to soften as is happening during this remission. I also had a severe itchiness which landed me in the hospital in June in which supposedly I was not to last for another day. Turned out it was an allergic reaction to Levaquin and toxic shock syndrome. Don't be frightened, this was extreme case with involved severe itching involving the entire body in which my skin shed three times; once at home and twice in the hospital.
  9. Hello everyone..

    Hi Sam: Thinking of you constantly and I'm glad you sought help for your depression. Moving to Whitehouse to be near your parents and your husband's career sounds like the optimal plan. We have a Whitehouse here too, which is quaint Victorian homes and little expensive shops. It's actually call Whitehouse Station and they have year round "yard" sales held at the fire station and various areas in between. A new move and familiar surroundings are just the medicine the doctor ordered. Please keep us posted.
  10. Need advice

    Hi Kelly: Our instincts as Moms is to protect our children and in some strange way that means do we face the fear of finding out the truth? As I've said in the past on this forum, I ran from the truth until my son said "it is what it is" and putting a name to the symptoms doesn't change what it is, not evening running from it. If your daughter has symptoms, they need to be checked out. Your fear is that it's our disease, but it may very well not be. In any event, it really has to be addressed and the earlier, the better. Please keep us posted and drop me a PM if you'd like. We're here for you.
  11. Bad Itchy Skin

    Hi Jackie: Boy, did you just conjure up bad memories of a few months back. The friends here can attest to the torture of itching I was going through. Between my shoulder blades, behind my knees, at my feet, ankles, torso, inside my ears, top of my head. You name an area, I itched like there was no tomorrow. I was prescribed Benadryl, but it didn't work. Sheryl had mentioned Hydroxyzine and I spoke to my doctor about it. He put me on Hydroxyzine HCL, Cyproheptadine and Prednisone and knock wood :) , I've been itch free for over two months. Actually I stopped the Hydroxyzine HCL and Cyprohepadine some time ago and am presently weaning off the Predisone down from 60 mg a day to 10 mg a day now. If I even begin to feel an itch come on, I take the Hydroxyzine HCL on an "as needed" basis which is usually only one pill and I'm fine. I hope this info helps, because I absolutely know what you're going through.
  12. Social Security

    Shari: Having recently gone through the process, maybe I can help. Apply now and directly on line. Sclero/Crest is identified as one of the diseases that decisions are "fast tract" and generally approved; even more so since the new ruling in I believe, March 08. If you PM me, I'll forward you that ruling. The forms is a long and tedious one, but it allows you a password to go in and out of it at your leisure. Also be sure to read the directions as there is another form which must accompany it. Be extremely accurate and loaded with information. The more you give, the better for a quick approval. Go out of your way to supply the addresses, dates, fax and phone numbers they request. Don't leave any blanks. Secondly, your payments are not based on your present salary, but rather what you've put in over your employment years. Third, don't be shocked.......SSD payments are extremely low and you'll need supplemental monies available. Also remember that the Medicare portion will not kick in for another two years, so a hospitalization plan is a must until that time. COBRA will extend it's benefits to 36 weeks for this particular condition as well as others. Fourth, if you apply for SSI, you must have virtually no funds, assets, etc. All bank accounts, cars, residences, any and all assets will be checked and recorded. In this case, an attorney should not be necessary. That's not to say some have been turned down, but in this situation it appears to be a rarity. Hope this helps and keep us posted.
  13. Update with bowel/gastric problems!

    Celia: I am going through the same thing now for the last 3-4 weeks, although not as seriously as you. The Imodium seems to do nothing. I'm running about four times a day to the bathroom; not constant diarrhea, but it's as if whatever liquids I drink come out then, as opposed to the normal route. I'm trying to figure if it's the Vitamin D I started at the time, or my weaning off the Predisone. I have a general practitioner appointment for Thursday, but figure I'll try to get in today or tomorrow. I don't feel drained in that I'm keeping up with the fluids and Potassium as part of my daily routine. Keep us posted and I the same.
  14. Mispronouncing or mispeaking your words

    Smurfette: I love it, "mental pause" . A lot better sounding then "senior moment". I totally agree with you in that this is just a normal occurrence. I think we're just so preoccupied with so many things, it's just a minor overload for the minute. Actually I think it's quite funny. I got a glass of water from the fridge, put the bottle back and for no apparent reason went over to the microwave and set it for one minute :huh: ; go figure. I don't let these little things bother me. What irritates me is when I have a beverage in my hand and then go looking for something else, placing the glass down, it could take days before I find it again and always in the weirdest places! To all, relax...it's normal.
  15. Good morning Everyone..

    Sam: I am so happy you're on the upswing and feeling better. In reality, this move could be a blessing. A whole new beginning is the change I think most of us could use. Decorating the new homestead and creative ideas take over. Wishing you all the best in your new adventure.
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