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Sharon T

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About Sharon T

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    Thousand Oaks, CA

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  1. You guys were so right! Shingles it is. Even though I've had the vaccine that is supposed to prevent or at least lessen the severity of shingles, I've got a really spectacular case according to my doctor. The meds work pretty well, and it is definitely improving. Not fun, but understandable given the immune system and the stress. Thanks for the quick responses!
  2. Congratulations, miocean! Hard to believe its been a whole year! :emoticon-congratulations: It sounds as if your life has truly been turned around by the transplant, and I'm so happy for you.
  3. I haven't posted or even been logging on to the forum for a while, as I've been dealing with relocating my 92-year old father to assisted living, getting his health issues under control, and trying to help him through the onset of depression. As a result of all the stress, I've started having skin pain and pain in the flesh right under the skin (not really in muscles or joints) on my trunk, and today I've developed a red bumpy rash that doesn't itch, just is kind of painful to the touch. I'm pretty sure this is inflammation related to stress. Anyone ever suffered anything similar, and is there anything you can recommend for the pain? Its not so severe that I can't tolerate it, but its really unpleasant! :(
  4. I also have classic scleroderma mouth, but since I've also always had a smallish mouth and spent a lot of years with a cigarette poking out of it, it never occurred to me that it wasn't the result of smoking! I feel kind of the same way about the pulmonary fibrosis - I always figured I'd have some kind of lung problems because I could never manage to quit smoking for all those years, but instead I have lung issues from something totally unrelated to the smoking! Is this what people mean when they say somebody must have a good sense of humor? :closedeyes:
  5. I guess in some ways I've been lucky on the depression/blues side of Sclero. I was already on an antidepressant when I was diagnosed, as I'd started taking it 7 years earlier when I finally was able to quit smoking; since I liked the way I felt and was more like my usual "pollyanna" self while taking them, my doctor recommended that I keep taking them. I'm sure they are one of the reasons, among many, that have kept me on an even keel the last couple of years while dealing with the uncertainties, pains and other tribulations of being a sclerodermian. This board has also been a very, very good place for me to come from time to time, to remind myself how lucky I am to have good treatment and to have been diagnosed in a relatively short time after becoming really ill. I'm not able to help others too often, but I do find that knowing how many really wonderful people are out there willing to listen to me when I need someone, and to share their knowledge with me when I have questions or concerns, is incredibly helpful in keeping my spirits up when "polly" starts losing her "anna" and gets a tad weepy or woe-is-me-ish.
  6. I'm one of that low percentage. my right heart cath showed PHT with exertion and after being involved in a study group for Ambrisentan (letairis), it appeared that my PHT was improved by use of the drug. Amazingly enough, after the study was finished, my insurance company actually approved continued use of the drug, notwithstanding the fact that usually it is only given if PHT is present at rest (mine is only present with exertion). It is an extremely expensive drug, but it seems to help my shortness of breath. I also have pulmonary fibrosis, secondary to scleroderma. We just recently took a trip to Africa, and I did just fine. Not sure if that's thanks to the letairis, but I'm certainly not discounting the possibility. I have done better on my 6-minute walks since starting the drug, although my breathing tests have not shown any improvement (still about 60% of normal lung function). But, hey - I haven't had to go on oxygen, so I'm not complaining!
  7. I'm having a lot of trouble sleeping these days. I'm sure its probably related to meds and/or the sclero, but I hate feeling so tired all the time. I've tried various over-the-counter remedies and the only one that seems to work consistently is benedryl, but that gives me really bad dry mouth, plus a groggy feeling in the morning (which takes a couple cups of coffee to dispel :closedeyes: ). Has anyone found a good cure for this (or even one that works relatively well)? I don't drink caffeine after 3 p.m., and only drink wine in moderation in the evening, and I try to exercise fairly regularly, but this lack of sleep is really starting to get to me! :emoticon-insomnia:
  8. thanks for the tips, Jeannie. I'll try them all until one of them succeeds!
  9. Wow, that's my doctor (Dinesh Khanna) who authored this article! I'd love to read the whole thing, but not sure how to get it. I've been participating in some of the studies at UCLA, so it would be interesting to see what came out of them. :)
  10. Jeannie, I couldn't agree with you more! Effexor and I have become very good friends over the years. I'm quite certain I would be feeling a whole lot worse without it. I've toughed it out quite enough for one lifetime, and now I'll cheerfully accept all the help I can get!
  11. Okay, based on the previous posts that are loaded with great advice and incredible empathy, I'm now certain that scleroderma makes one a better person. That's my story and I'm stickin' to it! And where else would I have learned about a "dummy spit" and a "tanty"?
  12. Hi, Sis - I've never had the itching, but I certainly had the hair loss! I found that using a speical shampoo and scalp treatment helped with the hair loss. It slowed the loss at first and then seemed to encourage re-growth. You can send me a PM if you want the brand name. Good luck - I hated losing my hair! <_<
  13. Hi, all of you - I was really glad to see this thread. I never thought I was vain but I've been having real difficulty coming to grips with my current appearance. Age is bad enough (I'm 66 this year), but with the steroids and other meds, I've gained 30 pounds that I definitely didn't need. So now I kind of resemble a soccer ball (I'm not quite 5 ft. tall, and I weight 145 lbs. now). I've also got the sclero lips. I managed to stop the hair loss (which was really breaking my heart, since I always had "good" hair), by using a shampoo and scalp treatment; the hair actually re-grew after I'd been using it for a few months. Muscle tone and skin tone are both definitely aging faster than they should. I guess I'm using this thread as a way of complaining about my appearance without having to worry that the hearers will call me a "whiner" or something. I know how much worse it could be, and at least the nastier aspects of sclero that have developed are under control for the time being, thanks to the meds. But it is so frustrating not to be able to control weight, strength, stamina, etc. by dieting and exercise the way we're told will work. It used to work, but it sure doesn't anymore! :emoticon-bang-head:
  14. Hi Sarah - As a 40-year smoker who tried to quit at least 20 times over a 30-year period, let me add my congratulations to you! Quitting is without a doubt one of the most difficult things you will ever do, and its something that a non-smoker (or a "recreational" as opposed to "addicted" smoker) can never come close to comprehending. Chew as much of the gum as you want to - its not going to hurt you. I did the gum along with anti-depressants and the patches for three months, just to be sure I was completely past the point where I'd give in and go back to smoking. I'm now 8 years as a non-smoker, and I truly never crave it - I never thought I'd really not remember what smoking was like, but I honestly don't! So hang in there. The end result is definitely worth it. Oh, and tell your husband to smoke outside. At least until the smell of cigarettes becomes offensive as opposed to enticing! ;)
  15. Oh, this was such a pleasant read :glare: I'm two out of three also. Nice to know what's probably going to kill me, but on the other hand, as Jeannie said, I don't plan on it happening any time soon! Now, if they'd just get to work and figure out how to reverse these nasty fibroids, etc.
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