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Donna V

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About Donna V

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  1. Sharon, I've always had "different" skin (reacting severely to sun, wind, cold, hair remover and even preparations designed to soothe those reactions) but about 2-1/2 years ago, after I had a segment of colon removed, my skin developed a patchy, itchy but sensitive reaction over my entire body with the exception of my pelvis and anterior trunk. It developed into what look like scars and/or burn scars all over, with bigger patches on the fronts of my shins and mottling on both sides of my face. My Raynaud's has always been there but was never unbearable until a couple years ago. Last winter was really bad; the skin deterioration I had developed before winter started to develop ulcers. Ouch. Donna
  2. I'm a couple of years older than you and now have or have had almost every symptom you described, and boy did you describe them well! I don't know about the morphea, though; my skin problems have gone on a long time and no one ever labeled them. (Ha ha, guess that's what I get for going to a dermatologist whose primary focus is Botox!) Anyway, I DO have Raynauds and that was the first, most prominent symptom I got. I'm glad you don't have that one! I read an article through a link in this website about how scleroderma can affect your gastrointestinal tract, with reflux, diarrhea and constipation being just a few of the ways. It's hard to keep it all straight, but reading some of the articles is really helping me understand a lot more, and knowledge is power, right? Take good care of yourself! Donna
  3. I'm sorry I missed this chat! I work during open chatroom times...yes, I'm still trying to work with the "trifecta" of autoimmune diseases, Mixed Connective Tissue Disease, but it's getting really hard to be productive and I've been counting the minutes until my shift is over lately. I worry a lot about the reduction in income once I get disability, how will I manage, blah, blah, blah and feel my intestines knotting up. My best friend at work knows about the MCTD and is incredibly helpful, with suggestions about how to be okay with forgetting to bring my medicine (by keeping extra in my drawer, duh...why couldn't I think of that?). I told my brother and sisters, expected none of them to be particularly supportive and wasn't TOO disappointed when they let me down. (Silly me. I had actually hoped they would become a little less helpless and lean a little less on me for support!) Where am I going with this? I'm not sure exactly, except to say that I wish I had a significant other, someone really close for physical and emotional support. I don't, but feel you all can relate pretty well to what I've posted so far. When I don't know whether I trust someone enough to tell them, I keep my mouth shut and come back to this forum and read your clever and often insightful posts. Thanks for you all! Donna
  4. Smac, I understand your concern about being on prednisone, but I tend to think the advantages often outweigh the disadvantages. You're pretty funny, by the way - "3 sticks you're out"? (Been there by the way - I almost walked out of a colonoscopy prep because 4 medical personnel, including the anesthesiologist, had already taken 45 minutes hunting for a good vein and it wasn't until I told them I was leaving that they found one.) Anyway, have a wonderful birthday! Donna
  5. Shelley, I think you're right, and I'm happy to report that I got in to see my primary care physician earlier today. She was alarmed, ordered what I assume were kidney function tests and scheduled me for a brain MRI for the stumbling (see post to Craig) and a 24-hour Holter monitor. I thought I would feel petrified but if anything, I feel relieved at the notion that I'll soon know what's going on, which is a lot better than freezing like a deer in the headlights because I'm not sure whether I want to risk embarrassment because it's nothing or I can't decide who to see. primary care physician was actually my first reaction but I've been frustrated by her office personnel who must be having a meltdown because even though I called three times last week to schedule an appointment, the phone just rang and rang. Luckily I persisted. You make a lot of sense, lady! ;) Donna
  6. Thanks Craig. Funny you should mention it, but I've been taking Nifedical (nifedipine) and took Diovan for a while over the winter. I bought a digital-read blood pressure cuff and found my pressures to be pretty average (around 110/70) once I got off the Diovan. I get lightheaded quite a bit though and feel as though I can't pick my feet up high enough when I walk to keep from stumbling. It can be pretty embarrassing at times. Yes, I've read that kidney disease and pulmonary hypertension are the two biggies to watch out for; I guess that's why the GU tract symptoms were so disturbing. I'll ask my primary care physician about the creatinine when I see her. Take care. Donna
  7. Thanks, the wishes are always appreciated!
  8. Hi, I was diagnosed with mixed connective tissue disease earlier this year (polymyositis, scleroderma and lupus) and am wondering if I should be concerned that I am having back pain at the lower thoracic level bilaterally. It started on the right side but is now on both sides. It is pretty persistent. I've been taking a lot of Tylenol lately, but never more than 3 grams a day for the pain. (I know, it can cause liver complications.) My urine seems practically colorless and is foul smelling. Are these symptoms for my rheumatologist to analyze or my primary care physician? Does this sound familiar to anyone? :huh: Donna
  9. Hi Leslie, Do you have an EpiPen? They can buy you time until you get to the ED. If you're taking that many medications and still getting new ones, I'd definitely discuss it with the doctor. Let me know how you're feeling after you've had your appointment and if the histamine blocker helps your hands. I've been shying away from appointments with specialists, wishing I could just find one who understood the whole picture; every specialist asks different questions, leaving me wondering if the symptoms have some connection that one doctor would recognize; I guess I'm grappling with the fear of being labeled a hypochondriac. Anyway, when I react to food, I have stomach pain that's relieved by vomiting but it goes on for hours until I'm retching up bile. When I told my allergist about these reactions 30 years ago, they were few and far between and I could manage them by avoidance. Now, I'm avoiding so many things, I've lost over 60 pounds. What scares me is that I react to the stuff they need me to swallow to diagnose something. Take care Leslie, and good luck at your appointment. Donna
  10. Well, I haven't had Reglan yet, but was on Protonix; I stopped taking it a while back because (a) the amount of medications I was taking was getting to be ridiculous (AND unaffordable) and (B) it seemed insane to be taking something to inhibit the production of stomach acid, which is supposed to help digestion; it looks like I might be back on it or something similar soon though. I've been using Alka Seltzer Gold which has provided some relief but I often have to follow it with an OTC acid reducer. I've been wondering about the GI effects of scleroderma...they still seem to be "refining" my diagnosis, I guess you could say, but I read an article at the scleroderma website that seemed to describe my GI symptoms to a T from one end to the other! I'm wondering, though, is hypersensitivity and/or allergic reactions to all things ingested (foods, medications, even bowel preps) a common characteristic? I've had colonoscopies that I was told were "all right," only later to learn that they were inadequate because of poor bowel prep. I can't keep any of that stuff down long enough for it to work! I had to have part of my colon removed but it ended up taking them more than ten hours to perform the operation, again because of a poor bowel prep. I'm sick of going back to the doctor and don't have another appointment scheduled for about 2 weeks, but was wondering if anyone who likewise has a "sensitive stomach" could recommend an effective laxative that they can keep down. I almost bought MiraLax but it looks like the active ingredient might be one of those used for bowel preps.
  11. I hear what you're saying and you're not alone! I had what sounds like the kind of life you once had. I listened to my body and knew what was good for it and what wasn't almost intuitively. People couldn't believe me when they learned my age. And then, well, then my body started telling me things I didn't understand. I still don't. I want to believe I can control this, that too much stress in my life is what triggered it and that I can stop the progression of disease because I could control my physical health and well-being so well before. I think we all share reactions, the denial, anger, depression and grief, but people are a such a complicated mix of nature and nurture, beliefs and circumstances. For example, I've been so submersed in denial that I've avoided this site for months (cleverly "misplacing" my login name/PW) so I could concentrate on the other things in my life and forget what doesn't want to be forgotten. I'm hoping you'll feel free to vent, to listen to what others have to say, and to offer your own feedback if and when and for as long as you need to; I think ultimately that the sharing and helping one another is what really matters. Donna
  12. Hi Sarah, I'm a newbie too; I just found this site a couple of days ago. Have you been crocheting and knitting for very long? I started knitting a while back to calm my nerves and have enjoyed it a lot. If it isn't an overly complicated pattern, it's almost a kind of meditation; you can just put yourself in "the zone" clacking those needles together! :) I think educating yourself to every treatment that's available and comparing notes on what works and what doesn't is a giant step in the right direction. It's got to feel incredibly empowering to know all your options before agreeing to a treatment or procedure. You know, we haven't had the opportunity to chat yet, but I hope we do soon. Good luck with your treatments! Donna
  13. Thanks everyone, I can't tell you how good it feels just to read all of your feedback and to know that YOU UNDERSTAND!!! :D The blank stares or "Oh yeah, my fingers get cold too" kind of non-grok I was getting was maddening! I've got to tell you, I do have a few things going for me. I've been a medical transcriptionist for 35 years with a background in occupational therapy...I was 6 months away from getting my master's when my health broke down the first time, and that was nearly 15 years ago. My education has helped me in small ways, when the emotions pass and I'm able to think clearly. I guess what has been most confusing to me is trying to separate the MCTD from the allergic reactions, since I've had so many and they've been so different. I'm going to see if I can schedule an appointment on Monday with someone who specializes in scleroderma, lupus and MCTD. That doesn't mean I really don't like the doctor I have now, because it didn't take him long to order the right tests, but I do want to find someone who will completely share those results with me, and I want to know that whoever I entrust with my care will remember things like the allergic reactions I've had. You know, I'm feeling more optimistic already. Thanks for the perspective, Peggy, Jess and RTS; it really does help to know you aren't alone! Donna
  14. Hi, I hope I'm doing this right. I type for a living and have never really spent a lot of non-working time at the computer, so it's all new to me. I'm a 54-year-old woman just diagnosed with mixed connective tissue disease and I've been wanting to talk to somebody who'll listen! My rheumatologist doesn't seem to be paying a lot of attention. His office is always full and he's always running late. I have Raynaud's really, really badly which is why I went to him in the first place. My fingers have been swelling up like sausages when I type, which is making it harder and harder to earn a living. They lose sensation and I've developed sores that won't heal on my fingers and toes. The doctor doubled my dose of Norvasc and my chest got real tight, my hands got hot, red and incredibly itchy and I had to stop. He switched my anti-hypertensive to Diovan and gave me Nitro-Bid to apply between my fingers; I've been having the same reaction with the cream, only to a lesser degree, and I'm wondering if I could just use less and not get the reaction. I'm allergic to everything it seems; no more milk, wheat, soy or eggs, and now I'm reacting to the meds that are supposed to help me! It's been awfully hard to take care of myself since this all started; I live alone and never had children, and I don't get out much because I don't have the energy and my extremities get so numb and yet searingly painful when I go out. I'm being tested for pulmonary hypertension now; just had an echo on Wednesday and PFTs/DLCO scheduled for next Thursday. You all seem like a great group of people; how did you cope when you were first diagnosed? :wacko:
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