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Everything posted by truman

  1. 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. 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. 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. Is DLA the same as SSD? I'm not familiar with the term.
  5. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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.
  16. I began having numbness in my hands and feet in 1991 with teleangiectasia on finger tips, feet and face. The numbness turned into full blown Raynauds shortly thereafter. Went to see a general practitioner who did blood work and diagnosed Scleroderma. Never heard of it, so I cruised the internet and got so upset over what I read, I dismissed the whole diagnosis and stopped seeing doctors unless absolutely necessary. Although I dismissed the very idea, I subconsciously kept it in the back of my head. As the years went on, separate symptoms crept up that were treated by a new general practitioner I began seeing due to HBP. Conditions treated by my general practitioner were IBS, thyroid, Raynauds, cysts (which were the calcifications), etc. He referred to the teleangiectasia as being caused by smoking. Since each symptom occurred separate and apart from each other, the "string" was never formed to be diagnosed as one illness. I remember at one point the general practitioner becoming very irritated with me because I didn't heal properly and he'd ask what my problem was or what wasn't I doing that I was supposed to be doing. The final diagnosis came last March 07. My elbow was getting stiff and the skin on my forearm very tight. general practitioner sent me to orthopedic doctor who had me in a cast for three weeks. Still not getting better, I went to see a Rheumatologist on a neighbor's recommendation who took one look at me and said CREST. Blood tests confirmed her guess. Ulcer developed on my toe in March 07 and my general practitioner, now aware of my diagnosis, continued to see me and try to treat the condition. Continually getting worse, in November I went to a wound care center but it was too late and I lost the toe. In the interim, my Rheumatologist decided to quit the practice to teach at a University forcing me to find another. I found a great one through the recommendation of my general practitioner. My present Rheumatologist has a really good handle on my condition and I'm now on four major meds a day instead of the nine for all these years. After everything I've been through these past years and a close call this past June, I am no longer embarrassed or afraid to say loud and clear, I have CREST. I think I've learned to handle it well both emotionally and physically. I'm greatly impressed with my little circle of doctors (dentist, rheumatologist, GP, podiatrist) who if they didn't know what CREST was, now do. They work with me, we discuss alternatives and conditions and they are completely open to my educating them whenever possible.
  17. truman


    Excellent insight Kristine :). As my friend who had cancer and myself were discussing yesterday; we never asked "why me?". We just got on with trying to get well. For my friend a nurse, she said the strangest thing for her was being on the other side of the situation. What doesn't make us weaker...makes us stronger. Keep up the positive attitude .
  18. Went for my weekly visit today, and again things are progressing nicely. If you remember, a while back he had brought up using collagen as a filler to fill the remaining void in the wound. I gently reminded him again, that the problem with my disease is that I build up too much collagen. The nurse chimed in quickly and said "yes doctor, I read that on the internet". I added that if he would like, there is a specialist of CREST and Sclero at the nearby university and gave him her name. He seemed extremely interested and wrote it down, saying he would contact her for additional information if necessary. I was impressed by the nurse cruising the internet to learn of my disease and more impressed with the doctor for accepting the reference of a specialist of this disease in an effort to heal my situation. If it just take one of us to educate one nurse and one doctor, think of how that could multiply as that one nurse and one doctor starts discussing the case and disease with their peers? More awareness will bring a quicker diagnosis and proper medication from the get go. I think my knowing my disease as I do, and explaining it to the doctors I presently have on my team, I'm a little more confident of the treatments I receive. I have yet to meet someone in the medical field who hasn't openly said "what's that?" other than my rheumatologist. I find they are eager to learn and what better to have, than a live, speaking specimen? ;)
  19. Sam: A well deserved leave of absence. You need to get priority one settled first, and that's you. I met an school mate of mine at the local supermarket today. She actually moved onto my block about two years ago. We hugged and kissed and sat on the bench in front of the market for an hour just catching up. She recently had both breasts removed due to cancer (another in our little hometown cluster of illnesses) and she was shocked to learn of my disease. She was more upset that as a nurse, she wasn't there to help me. How could she possibly help being so sick herself? She's come back from her turmoil fantastically. She was always filled with vinegar as a teen and we got in many a situation as teens do ;) . So for this one hour today, it was like we were teens again and rehashed old friends and present situations. As we hugged again to leave, she called out "Your done; you're never given more than you can handle and you've handled it well, it's over. You're on your way to being well now. From now on, you're priority one, you hear, priority one." You have to make yourself priority one Sam; even if mates or children don't understand. Only then, can you hope to get above a great deal that is bringing you down. It doesn't mean you can never go back to work; my friend did after three years on disability but she went back a "new and improved" version. I am so glad you've gained the insight to start thinking about you and I do hope you'll pop in often to let us know how well you're doing. We've all been there and if some haven't they may venture that path as well. I'll keep thinking positive thoughts for you and I know you'll do great!
  20. JJ: Their offer was a much higher payback figure, but I flew off the handle and told them they virtually took advantage of a disabled person; ME. There was silence all around on the phone (total of five of us on conference). I gave them my offer and told them to take it or leave it, because basically the trees hadn't bloomed and I did not have the money. :angry: They chose to except the offer.
  21. Sheryl: The overpayment was what SSD paid which should have been deducted from their payments since basically February to date. This wipes the slate clean. They will now continue with the balance of my payments through September less SSD payments (what they should have done all along). There were too many emails depicting their neglect to force the issue. They provided an apology for the error and we settled on those terms. I probably could have gotten a total release if I sued, but physically and mentally, I'm not up for that kind of challenge at this time.
  22. Company accepted a $5,000 back pay for their mistakes. Went from $8,200 to $5,000.
  23. Sam: Seems since the dam broke free you have a handle on this now with a perspective on which road to take. I too had a mental meltdown several years ago when it all became too much. I came back a stronger and more diligant individual. You are now on that road and seeing the doctor is one of the best paths. My neighbor goes once a week just to air out her frustrations with her personal and professional life. She then begins the work week with an uplifting attitude. As my dear Aunt Bessie always told me; one door doesn't close without another opening. I believed her then, and I still believe it. What seems the worst somehow opens doors to bigger and better things. I'll keep you in my thoughts and please keep us updated on your progress.
  24. It shouldn't effect any disability payments, but I'd let them know of your marriage. If you will be covered under your husband's medical policy, I think it would effect the Medicare. Maybe Smurf can add to this.
  25. Thanks smac0719: I have a conference call set up for Monday afternoon with them. My ex company's HR rep will be on vacation, so I'm basically going it alone with the help of an advisory rep who keeps tabs on the LTD company. Spoke with her this morning and she's fuming about what happened and is aiming for them to take a loss as well. I'll let you know.
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