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Everything posted by truman

  1. Debbie: Such a hard decision, I know. Quite frankly, I didn't get a handle on my health until I was admitted. I had meds from three different doctors and though I brought each a list every time I went, I was over medicated. I know the travel is far but maybe there can be accommodations made for you to stay the weekend with your husband. Unfortunately with all the hospitals closing here in Jersey, there is not enough beds to go around for the patients let alone to say with loved ones. Sleep in a chair by his bedside if a bed is not available for you. I agree with Sheryl, unfortunately the holidays cause many accidents and right place/right time usually applies. Your husbands type "O" is rare to match, but at the hospital he'll be under constant observation.
  2. truman

    PFT test...what to expect?

    Depends Karen. If the droppings are allowed to dry before pick up, you risk the airborne dropping dust debris coming at you if you're in the yard or he brings it in on his clothes.
  3. truman

    I was turned down again

    Sam: Sorry to hear of the veto again. Have you seen the revised 20 CFR Part 404 Revised Medical Criteria for Evaluating Immune System Disorders; Final rule? Maybe SSD needs to get with the program, because it virtually guarantees your approval. PM me for my email address and I'll forward the ruling to you. Linda
  4. truman

    PFT test...what to expect?

    Karen: I'd always heard that pigeons and their droppings can be dangerous. I remember that because a neighbor kept a coop for hundreds of homing pigeons in his back yard. I don't believe that contributed anything to my illness, as this was a couple years prior to my moving into the neighborhood as an adult. He finally released all of them but the coop stood erect for years, as no one was willing to inhale any of the droppings in an effort to take it down. Linda
  5. Smurfette: I am an extremely private person, in addition I was stunned to learn I had such an illness and for some reason quite embarrassed by it. Just the idea that it was so rare and the thought of having to explain what it was without bursting into tears. The only persons who knew were my oldest son and my best friend. I too have CREST and by looking at me, one would never know there was a problem besides maybe growing older. When it all started to hit the fan, the disability application, hospitalization, then I knew questions were going to be asked and it was "time to come out". First was with my younger son, who didn't have a clue at age 27. I thought I could pass it over on him, but things just got out of hand and it became harder and harder to do. Second was having to tell HR to receive proper applications for benefits due me, but contrary to what HR is supposed to keep confidential, they tell their "friends" in the company. I could tell by the polite inquiries about my health. My circle of friends were last, and they have been my life line. I like not having to hide anymore. I like that if I say I'm tired or not feeling well, no one is pressuring me anymore. Those I do tell, as with my brothers, would rather not absorb what I saying. They can't handle it, they move emotionally away. Do you tell? When the time and attitude is right, you'll know who and when to tell. It's all about YOU being comfortable, not the outside world. Linda
  6. Darlene: Please tell Suzie I love her and she's been an inspiration, friend, hope and all to me. Kisses and hugs to dear Suzie. I love you Suz. Your Friend Linda
  7. truman

    Thyroid Problems

    I've had slow thyroid problems for about 10 years; believe it's connected to CREST syndrome.
  8. truman

    Getting my life back a little at a time

    luvbnmom3: Have you been checked for anemia? I went through an incredible coldness this past winter, unusually cold and couldn't warm up. I had the t-stat nearly 90 degrees with many blankets on and still chattering. A routine blood test had my doctor calling the house that my blood count was dangerously low. Had to start taking iron supplements and finally adjusted accordingly.
  9. truman

    New Here and really struggling

    Erin: This disease can be frustrating to diagnose even to today's medical field. Have them check for polymyositis as well. It is imperative that you become your own advocate and supply your doctor with necessary information; much of which can be found here. You are not alone, definitely not alone. We are here for you whenever you need advice. Please reach out to different doctors if you are not satisfied. Do you have family who support you? Please keep us posted and ask questions and/or share information. Between all of us of are a vast of information globally, we will certainly be there for you.
  10. lis73: You may not have CREST and/or Sclero. Have you discussed polymyositis with your doctor? Don't stress out just yet. polymyositis, CREST and many Sclero symptoms can be controlled through medications. Stress is what you DON'T need now. Keep us posted; we're here for you. First and foremost, be you're own advocate and push the doctors into tests and diagnostics until you get an answer.
  11. truman

    Muscle weakness or aches?

    My childhood friend is diagnosed with polymyositis which concerns the muscles. Has your rheumatologist tested you for this?
  12. truman

    Scleroderma Causes

    Hi KarenLee: I too, had constant strep throat from youth on. I also remember as a teen, being in the ER for an unrelated incident and the doctor on call being drawn to the tanglestasias and questioning how long I had it. I shrugged it off as birthmarks, as I had them forever. My family life was also a destructive and dysfunctional life as I lost my dad at 15 and my mother didn't know how to deal from that day on in a normal parental role. My skin was always dry and flaky, too much for a young teen. Warts too. The list goes on and on. Seems to be similar signs among all of us.
  13. Glenwood: I don't know how much I can contribute other then to sense your mother is fiercely fighting for her independence; something I can understand. If the situation is at the state to which Hospice is involved, I hope you can allow your mother the room and grace to maintain her wishes. My thoughts are with you and your family.
  14. I met up with friends for the fourth which turned out to be a very nice evening. We ate, laughed and viewed the fireworks. A special friend I've known for years, which generally we get to see each other 3-4 times a year, invited me to another outing next week at her house. As we sat watching the fireworks, she gently mentioned that she had a bedpan for me as I can't take stairs very well. I don't know why it hit me so, but I never thought on those terms. I guess I didn't think that far ahead. The fact she did, is gracious, but it threw me that it may be a necessity. Now I don't think I want to go, in that I feel disabled more that I thought I did. A neighbor who is 20 years older then me, took my arm and offered to walk me home. I didn't need the help, but she was so pleasant and nice, I let her. I know I'm being foolish, but again, I thought I hid my disability well. Guess I have to start learning to stop hiding and just start living.
  15. truman

    Blood Pressure

    Sharon: I've had HBP for many years, I mean really high :blink: . I've been prescribed Exforge (Norvasc withwater pill derivative) in addition to two water pills a day for it for the last month. Prior to that I had an additional HBP med twice a day and water pill med; total per day six pills per day for HBP. It wasn't until I had to leave work, that my BP gradually came down. When I had that severe case of hives, they removed me from all HBP meds except the Exforge and two waters pills a day and now my BP remains stable at the normal range. :)
  16. truman

    What do you do to lift your spirits?

    You're right KarenLee about humor and comedy. I always go to sleep with a comedy on. Doesn't have to be hilarious, just light enough to bring a smile to me. Went to the fourth picnic and laughed so much with such very good friends that I came home and actually slept a full 8 hour night with an hour nap this afternoon. Haven't slept normally since diagnosis. Humor is very good medicine.
  17. truman

    What do you do to lift your spirits?

    Serena: Cooking lifts my spirits. I love to cook and since I'm now by myself, I still haven't learned I need to cut down on the recipe sizes, so I share with neighbors and friends. Divorce weighs heavy. Don't let it get you down. I don't know whose choice it was, but once everything is done and over you'll be able to move on. Divorce comes in stages; shock, denial, anger, etc. Each stage will pass. It is only now that my ex and I are able to speak, and I was divorced in 1982. There was always an ulterior motive if he wanted to speak to me, but since I became ill, he seems to speak more from the heart. Don't get me wrong, the wall and radar will always remain with me.
  18. truman


    Peggy: Medicare may not be enough. My neighbor and I were just discussing that this afternoon. You might want to consider a supplemental policy such as AARP offers.
  19. truman


    Sweet: My COBRA is $743 per month. I never paid that for a mortgage and taxes!
  20. Peggy: Happy, Happy birthday and may each firework that bursts into display tomorrow night be in celebration of you! Many, many more to come. Linda
  21. truman

    Warts and autoimmune issues

    Or he to you. I have read where Sclero can be cause by fetus cells remaining after birth.
  22. truman

    Happy 4th of July everyone

    Hey Karen: Plan on going to a neighbor (best friend actually) for a small get together. Started making empanadas yesterday to nosh on. Small groups are always fun. Around 9 PM our town will be having a fireworks display. It's great in that we can see it right from where we are. Happy 4th everyone!
  23. truman

    Twitching in bed

    I twitch too, but I find it's while falling into the deep sleep rather than the twilight sleep. I actually welcome it as I know the deep sleep is coming soon which I so badly need.
  24. truman

    Trying to find diagnosis

    Hi Ozzie, I used to read the posts and cruise the internet and constantly say to my son, but no, I don't have this, that, this and that. It's basically not a cumulative thing for a diagnosis but rather a here and there that truly brings the whole diagnosis together.
  25. truman


    Christy: Looks like there's going to be a lot of partying and celebrating this year with you, sweet, myself and all the others that finally got permanent disability approval I was following doctor's orders to reduce Prednisone to get to 20 mg and no go; rash and itching broke out again. He said stay on 30 mg until I see him next month.