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Everything posted by warmheart

  1. Hi everyone, Just curious...does anyone have severe allergies and also scleroderma? If so, is there any evidence that anyone's aware of that they may be related? The reason I'm asking is that (although I'd had Raynaud's and joint pains for a few years beforehand), the worst of my problems came on very suddenly in the mid-'90s, on the day I began allergy immunotherapy. It was like having a very bad flu; I was too dizzy to stay out of bed, and my hands were totally stiff and weak, and it felt like I was wearing a big pair of boxing gloves which made my hands pretty useless. As it was explained to me then, allergy injections work by turning IgE to IgG and theoretically should worsen autoimmune disease, but don't, for reasons no one understands. The allergy clinic sent me to an excellent immunologist to sort out what was allergy and what was autoimmunity, but unfortunately he had to leave his practice abruptly, so that was that. Because my allergies had become life-threatening they didn't want to stop the injections, but after 4 1/2 (fairly miserable) years my esophagus became paralyzed with a scleroderma-type motility disorder. That was the end of the injections! The allergy clinic nurses had been trying for years to persuade me to see a rheumatologist, and in the end the general thinking was that perhaps I was the exception to the rule that the injections don't worsen autoimmunity. Have any of you had a similar experience, or have anything to add? I should say here that I have never been to a rheumatologist (finally working on that now) and so I do not have a definitive diagnosis of scleroderma or anything else. Thanks a bunch! warmheart
  2. warmheart

    Trying to get eyes to look normal again.

    Hi Amberjolie, It's been a long time since I've posted, though I have been keeping up. The skin on my face loosened again quite a few years ago now. Only my dentist can still notice a difference. And I'm getting saggy skin and wrinkles more or less on schedule. :( When my skin was tight, what helped was slathering a thick layer of super-dry moisturizer (the thick solid stuff) over my face every night, including over my eyelids. Be sure that whatever you use is labeled as safe to use around your eyes. I think I have smallish eyes, and always wear a thin line of dark eyeliner on both upper and lower lids, and also plenty of mascara. It makes my eyes look much bigger and bolder. Also, my lips are naturally thin, and glossy lipstick or gloss in a bright color makes them look fuller and balances my face. Hope this helps! Hugs, warmheart
  3. warmheart

    Trouble Sleeping

    I used to be exhausted and yawning all the time. Turned out that I was waking up fully probably about every half hour all night long because of reflux. And I had constant nightmares that I was suffocating, probably when I was aspirating in my sleep. I had the head of my bed flat and wasn't on any reflux meds at all. When those things got fixed, I started sleeping a whole lot better. Hugs, warmheart
  4. warmheart

    Aching legs

    Hi miocean, Well, I'm not a doctor, but could it possibly be because you're slowly getting your leg muscles back in shape? Just a thought; could be totally wrong. Maybe the best place to start is with your primary care doctor, because that way he can coordinate the communication between all the doctors. Hope your legs are feeling better soon! Wish I could just wave a magic wand for you. Hugs, warmheart
  5. Hi Erika, Nice to hear from you! That's great news! And your vacation sounds amazing!!! It has been so hot here even since May. It was good for my Raynaud's for awhile, but I've been working so many hours that it gets worse again from tiredness anyway. Today was cool and beautiful--wish it would stay like this until fall. Bon voyage! :bye: Hugs, warmheart
  6. warmheart


    Hi Jane, Welcome to the forums! I was really fortunate (well, I guess) to have severe enough esophageal involvement that the diagnosis was pretty clear all along. I was pretty healthy otherwise for quite a few years, so I happily flew under the diagnostic radar until recently. No longer being undiagnosed definitely has its downside, but for me now the pluses outweigh the minuses. It makes doctor visits simpler, I feel much better on the meds I'm on now, and also feel a whole lot safer knowing that my rheumatologist is keeping an eye on my lungs. "I'm feeling psychological today"--love it! :D Hugs, warmheart
  7. Hi Janet, What an awesome article! And you are so awesome--you totally rock. It was great to read about the change your friends see since the transplant. :emoticons-yes: Hugs, warmheart
  8. Yeah, I'm not happy about it either, especially since I have to take 80 mg. a day of Prilosec until they come up with a better med someday. But there's no alternative; there's a risk of fracture if I take it, but a certainty of destroying my esophagus altogether if I don't. So it's a no-brainer for me, and I don't let myself stress out about it. Hugs, warmheart
  9. Congrats, Jeannie! You're awesome!!! Hugs, warmheart :happy-day:
  10. warmheart

    Surgery is scheduled!!!

    Hi Lisa, That's awesome news! The day will come before you know it. :happy-day: I know what you mean about wanting to see--I had spinal anesthesia once for an operation, and I was very disappointed that I couldn't watch the proceedings. That said, it's probably for the best not to see! Hugs, warmheart :)
  11. Hi Jason, Welcome to the Forums! Can we assume you're a Royals fan? :D Take care, warmheart
  12. Hi Lisa, I'd go for the smiley face too! oh, you'd think the hospital could put you on the payroll. You have a full-time job there! Good luck with it all; hope everything goes well on the 19th. Hugs, warmheart :)
  13. Hi Lisa, Yes, how are you, and how are things going? I've been thinking of you and wondering too. Hugs, warmheart
  14. warmheart


    Hi Nolaboo, Welcome to the Forums! I hope things go well for you with your new doctors. Sometimes it's not easy to find good doctors, but once you have and they've gotten to know you, it makes such a big difference, doesn't it? No doctor should ever make you feel inferior or stupid, and to me a sign of a really good doctor (and good person) is that he or she never would. It's good that you've been able to stay with your primary care doctor. Please let us know how things go for you! Hugs, warmheart :)
  15. warmheart

    Long stricture

    Hi Shelley, Boy, Gene really has been through the wringer! I'm glad his Nissen fundoplication did the job for him. I did thought of asking about a dilatation, but I don't really want one anyway if I can avoid it. Ten years ago, after I was first diagnosed and no stricture was found, one of the gastroenterologists (he specialized in the esophagus) decided to try a dilatation anyway just in case. It was done in the endoscopy unit, but the way it was done was that I sat un-medicated in an ordinary chair in an exam room, and he took the largest bougie out of the tray (it looked a lot like a giant turkey baster) and quickly rammed it once down my throat and back up (I almost wrote "up and down"--that would have been quite a procedure!). Afterward something went wrong and I started having chest pain; I managed to talk the recovery room nurse into letting me leave and then had too much pride to turn around 5 minutes later and go back. It hurt a lot to take a breath for about a week afterward. The friends I lived with are upset to this day that I wasn't admitted, they were so scared the first couple of days that I'd die at home. The doctor was very sweet and condescending when I called, and I thanked him and never went back to him. And it never helped my swallowing at all, presumably because there was no stricture in the first place. I've been told lately that these days it's done with endoscopy under sedation. Sounds much safer to me, but still I think I'll pass if I can! Thanks for your input, though, Shelley! Hugs, warmheart
  16. warmheart

    Long stricture

    Hi everybody, I've gotten a mild esophageal stricture that the gastroenterologist tells me runs most of the length of my esophagus. Basically it involves all of the smooth muscle (the part affected by scleroderma) and none of the striated muscle, which is why she thinks that the narrowing is caused more by progression of the scleroderma itself than by untreated reflux. I have to force food down and force it to stay down out of my throat, but my esophagus was already paralyzed so it's not much of a difference for me. Nothing gets stuck permanently, so I consider myself lucky there! Has anyone else had this happen? And if you have, what has happened in the long run? Thanks for your input! Hugs, warmheart :)
  17. warmheart

    Six minute walk test

    Hi miocean, What awesome news!!! Hugs, warmheart :emoticons-yes:
  18. warmheart

    Long stricture

    Hi Shelley, Thanks for the flowers! It's not a big deal, though--I'm so used to swallowing problems, they've just gotten to be normal for me. The stricture really hasn't made much difference, other than now I wake up in the morning with food stuck in the bottom of my throat that needs to be pushed back down. Something new, but as I said it's not a big deal. The gastroenterologist (first time I've seen her) recommended omeprazole 20 mg. a day, and then also to be re-scoped in 3 years for the Barrett's. But my primary care doctor put me on 40 mg. of omeprazole twice a day and got the insurance to agree to pay for it. I never asked her to do that and I was grateful to her, because 40 mg. a day hadn't been enough in the past, and so I knew I needed the high dose. Nobody mentioned dilatation, maybe because there would be such a long length to dilate? I was glad, because I'd had some past experience with dilatation and I knew I didn't want that. I'm sorry Gene has a stricture! I hope it doesn't bother him too much. Hugs, warmheart
  19. Hi Lisa, I'm so sorry you're having so many problems! Jeannie is right-- kids, and especially husbands, were created to carry heavy things. Ask them for help! You do so much for everybody else--it's good, not bad, to let other people help you too. It's good to hear from you and to be able to give you support, for a change, instead of the other way round. Hugs, warmheart
  20. warmheart


    Hi Joyce, I'm sorry you've gone through so much in your life. Doctors are under so much time pressure these days, and I think that's probably why things get mixed up sometimes in their notes. They're not out to get us! But it can get frustrating when it happens. My primary care doctor is absolutely great. She is my advocate and lately has gotten pretty knowledgeable about scleroderma (there was definitely a learning curve). Recently she caught a problem that specialists overlooked. I think it's vital to find a good primary care doctor to coordinate all your care, and also a good rheumatologist who's knowledgeable about connective tissue diseases. I had good reasons for bypassing the general rheumatologists to see a scleroderma specialist; because I do have scleroderma and have a couple of issues that need to be monitored, it was a good decision that has really made life easier for me and also, I think, for my other doctors who are stuck with my medical issues and with me! Please keep posting; I'm glad you've found us! Hugs, warmheart :bye:
  21. warmheart


    Welcome, Sherrytrifle! You rock, girl! Hugs, warmheart :VeryHappy:
  22. warmheart

    Anemia and Edema Problems

    Hi Pawndy, Yes, absolutely! You will feel much better, and it will probably take quite a while. I was put in the hospital for transfusions a few years ago because my hemoglobin dropped to 6 and my heart was failing. My legs swelled like balloons. The nurse practitioner explained to me a few days later it wasn't a quick fix, the transfusions kept me safe but it took a long time to get into such bad shape and it would take a long time to get better. She was right. I was put on iron after that and still take it to this day. So even if you never get back to 100% (I never did) it's still definitely important and worth it to be treated and stay on top of the anemia, and you will feel much better over time! Hugs, warmheart :)
  23. warmheart

    Hugs that can hurt?

    Ann, I'm so sorry for your loss. Hopefully things will go smoothly at the funeral. You have gotten some really good suggestions here; Jeannie, I'm convinced that you're a social genius. You and Sheryl should replace Ann Landers. Hugs, warmheart
  24. warmheart

    Is this a coincidence or not??

    Hi Summer, Glad to hear you've solved your problem for now and are feeling better. That said (and I am not a doctor, and of course everyone is different)...but as I understand it, for treatment of scleroderma esophageal involvement Mylanta, H2 inhibitors, etc. are not considered safe substitutes for PPIs like Nexium. As my primary care physician told me recently, different PPIs work better for different people, and sometimes it's necessary to experiment to see which one works for you. I've had my scleroderma with a lot of esophageal involvement for 10 or 11 years now, and after a few years stopped taking omeprazole for no good reason. I thought I'd do OK without it. If I had a lot of heartburn, maybe once in a great while I'd pop a few Tums. Now the entire bottom half of my esophagus is one long stricture with food constantly stuck above it, and I have Barrett's esophagus to boot, for which the lifelong cancer surveillance is not fun, believe me. And I'm relatively lucky so far. Now I take 80 mg. a day religiously, and I'm damned grateful the insurance agreed to pay for it. So please, Summer, don't just decide on your own that you can do without any PPIs. If you do need to be on them, maybe one of the other ones will do the job without making your life unbearable. Please excuse my rant, and keep us posted! Hugs, warmheart
  25. warmheart

    Esophageal stricture

    Hi relicmom, I'm currently on omeprazole 20 mg. twice a day, and still have heartburn pretty much 24/7 so I guess it'll probably have to be increased. It didn't matter for me whether it was covered because my primary care physician didn't want to prescribe PPIs before now; her reasoning was that if I thought I needed them I could get them OTC. But then she gave me a script when she talked me into going for the barium swallow the other day; I was expecting a huge copay but it was just the standard drug copay--a nice surprise! She didn't have to get an authorization, either. The generic is a big horse capsule that's not easy to swallow (kind of ironic, when you think about it), but that's fine because I really don't have trouble getting it down. Hugs, warmheart