Shelley Ensz

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Everything posted by Shelley Ensz

  1. I have a slight caution to add to this general thread. That is, some doctors go absolutely ballistic over Internet printouts. They feel that they should be the exclusive source of medical information for their patients. Please be sure to ask your doctor(s) how they view high quality information from mainstream websites. Some of them heartily object to information that comes from any source, other than themselves. It's best to know that up front, before accidentally treading on their toes. If your doctor is open to high quality Internet information, then use printouts from our main website and not our forums (if possible), since although our forum information is generally great, some of it is just personal opinion, and doctors are usually going to be more interested in solid information that includes citations. And if they are open to high quality internet information, try not to abuse their openness by bringing in reams of printouts or those from dubious sources. Also, it never hurts to ask (ahead of time!) whether your doctor is open to a collaborative relationship. Unfortunately, many doctors are still of the old fashioned "father knows best" school of medicine, and thus are not at all comfortable with patients who prefer to be more actively involved in their medical care.
  2. We now have SCLERODERMA Awareness Bracelets available, for $2.50 each (which includes regular shipping). We are accepting pre-orders for April 1, 2007 shipment. The teal silicone bracelets simply say "SCLERODERMA" on one side and "www.sclero.org" on the other. They can be ordered through our ISN secure online shop, by phone, or by mail. See: ISN Secure Shop: Scleroderma Awareness Bracelet.
  3. Hi Megan, We certainly are still reading this thread...it is our most popular thread, by a long shot! I hope other members take the hint to introduce themselves to us here, too. It is a great way for us to all get to know each other. I love the way you have adapted your creativity. Do you live anywhere near Sherrill Knaggs?
  4. Hi Barbs, I'm glad you're a teensy bit better. But I don't like the sound of your lung rattling. Please be sure to mention that, and your weight loss, to your doctor right away. You may need a different antibiotic to totally kick it out. Take the time to recuperate, and if your family gives you any grief, send them to us. We'll set 'em straight in no time flat! ;)
  5. Thank you, Chuck. That is beautiful, and very loving. There's just nothing on earth that can replace a mom. My heart goes out to you, and your family.
  6. Sweet, if you'd had the chance to follow Barbs (often hilarious) travails through rebuilding their homestead brick by brick over the years, you'd realize that moving is a very nasty word to her...probably something she'd rather not ever hear again! If it's pneumonia, and she was off to the hospital, she may be offline for several weeks or more. As you know, it's not easy to recuperate when we manage to be sick, on top of sick. But I sure hope she gets back soon!
  7. Hi Kamlesh, Some people seem to have some relief with what is called Cognitive Behavioral Therapy, usually in conjuction with the usual treatments. You may want to ask your doctors whether that would be suitable for you, or not. I've had a friend who seemed to benefit a lot, just by reading a few books on the subject. Perhaps you could read about it, and give it a whirl. As I understand it, it's not just "positive thinking". I'd bet most people wouldn't have ever gotten depressed in the first place, if it was as simple as that. But it does entail learning how to react differently and rephrase some aspects of self-talk. Think of it more as learning how to make the very best of a very bad situation, rather than pretending that it's not there in the first place; and learning how to accept (not fight) certain unavoidable symptoms. And I hasten to add that I'm not a doctor, I have no training in mental health issues, and in general, this is something that we are just not well-prepared to render advice on. Please let your primary care doctor know your concerns and ask them what more you can do. Sometimes it takes a lot of patience and different medications before a satisfactory result is achieved. My thoughts and best wishes will be with you.
  8. Hi Dave, My goodness, you are sure on a two-steps forward, two-steps back pattern right now. It's wonderful that they were able to catch the Afibs though, and get it under control. It sounds like a good plan to stay put and get things ironed out. And what a wonderful inspiration to meet someone who is post-transplant! I'll be thinking of you and sending good wishes your way.
  9. Hi Jennifer, I'm sorry, but I had to laugh at your description of this. I have also bolted from several doctor's offices over the years...plus a few more I sure wish I had had the good sense to run away from. Now my approach is to figure out which hospital system I want to be in (we have a variety, being in a large metro area), then I research the clinics that have privileges at that hospital. I reduce that to a list closest to me, and call each of the clinics to see what doctors are still accepting patients. I research each of those doctors and set up a 10 minute get-to-know-you appointment, starting with the one I think is most likely to be a good fit, from what I know so far. (I make it clear that I am in the process of selecting a new doctor and that I am not to be automatically enrolled in their clinic.) If there are several candidates in one clinic, I throw myself on the mercy of the receptionist and/or head nurse, and ask which internist would be best for someone with a rare, chronic autoimmune disease. If that generates more than one name, then I ask which one takes a more collaborative approach with patients, because I don't fare well with a stern authoritarian approach. At the interview, I bring a list of my most important questions. I pay attention to everything, especially my gut, and I really keep it in mind that there are plenty of other doctors out there if this isn't a terrific fit all around. It's a laborious approach (it takes a good day or two of concerted effort), but it really works. I feel extremely confident in my care, knowing that my doctor really knows his stuff and is well suited for me, and that my hospital is tops in the categories that are most important to me. Last time I did this, I ended up with a terrific internist, on my first interview. I also bring my husband along, in case he picked up on anything I missed. It's easy to be too eager to get a new doctor, and not take the time to ask all the necessary questions. In short, I no longer ever assume that any doctor is going to be a good fit. It's just too complicated with chronic illness, and too many clinics and doctors that are not well suited to providing good care for intricate cases.
  10. Welcome, Kerry and Erin -- we're delighted to have you join us!
  11. Dear BlueCherryBlossom, I'm sorry to hear your grandmother has scleroderma. It must be very difficult for you and your whole family. There's really no predictable course of scleroderma. At any point the illness can settle down and quit progressing, occasionally even reversing itself. But lung involvement can be very serious, sometimes. See our page on Lung Involvement for some more ideas. We're glad to have you here!
  12. Beryl M. Blatt died Tuesday, March 06, 2007 at the age of 64 from complications related to scleroderma. Scleroderma is a rare, chronic autoimmune disease which afflicts an estimated 150,000 to 500,000 Americans, primarily females who are 30 to 50 years old at onset (International Scleroderma Network, www.scero.org, 2007). Scleroderma means "hard skin." This complex disease involves tightening and thickening of the skin, blood vessel damage, inflammation and immune system changes. Beryl suffered from this disease for 17 years. Beryl was loved by many. She had childhood friends dating back to kindergarten. She was active with her alma mater, Von Steuben High School, and remained active with a dynamic group of friends from the school. She was a loving wife for 43 years, a mother of 2 and grandmother of 4. Beryl was also a trivia buff with knowledge in many areas including; pop culture, sports, entertainment and cooking. She had a passion for the Chicago White Sox and attended many games at the Old Comiskey Park. Beryl had experience in several fields, including teaching, insurance and sports memorabilia; but her favorite role was that of a loving daycare provider for her grandson. She also worked with charity groups including Gmilas Chesed Organization. A charity is being set up in Beryl’s honor to raise funds for scleroderma outreach, education and research. Donations are being collected in Beryl Blatt’s name by the International Scleroderma Network, 7455 France Ave So #266, Edina, MN 55435 USA or online at www.sclero.org. Read her obituary in the Chicago Tribune. (Submitted by Chuck Blatt, Sclero Forums member and son of Beryl Blatt.)
  13. Dear Barbs, I'm sorry you have pneumonia and are having such trouble getting the proper care! I hope things to better for you at the hospital. We will all be thinking about you and sending good thoughts your way for your speedy recovery. Meanwhile, we'll all go through Barbs Blog Withdrawal around here. Perhaps a good time for some of us to catch up on your Barbs Blog archives! Chock full of extra warm hugs....
  14. Thank you, Margaret! But really, sometimes I'm just wind and bluster, straying off topic just for the pure fun of it. :blink:
  15. Hi Peanut, I'm sorry to hear you are having swallowing difficulties. Cutting pills (even vitamins) in half or in fourths with a pill cutter can help, too. Pill cutters are very cheap (just a few bucks) and available in drug stores. Also (need I say?) just attempt one at a time, as it is no longer like the good ol' days of popping a handful at once. And lots and lots of water with each one, so you aren't putting down one pill on top of another one that is already stuck!
  16. Hi Barefut, Some tender spots (up to 10, it seems) are normal. It takes 11 out of 18 (specific) tender points for a diagnosis of fibromyalgia -- along with a slew of other symptoms. See our page, Fibromyalgia for more diagnostic criteria. Just having survived a massage without ending up in worse pain or in tears MIGHT mean that you don't have it. But if you have any doubts after reading all the criteria, ask your rheumatologist for a full tender point exam and fibromyalgia evaluation. But word to the wise, it is better to have "just" scleroderma, because after a diagnosis of fibromyalgia, just about every symptom you may have can be laid at the foot of "only" fibromyalgia by the doctors. And you'll see why when you compare the symptom lists of various arthritis diseases. For some of us, an initial diagnosis of fibromyalgia was certainly correct, but only part of the picture. And, ironically, it can sometimes seem to cause a delay in diagnosis of scleroderma or other rheumatic illnesses...because there is a ready explanation for nearly every symptom under the sun, making the tests that might reveal other ailments (like scleroderma) mostly unnecessary. That's completely off-topic of your question, but you know how it is, sometimes I start typing and my fingers just don't know when to shut up. :huh:
  17. How about, have you ever heard of scleroderma? That in itself can be a show stopper. Or at least, an appreciable pause in the conversation.
  18. Hi TJ, Welcome to Sclero Forums, it is wonderful to have you here. I dare say most of us were initially upset and overwhelmed when we learned about scleroderma and related illnesses. In the beginning, learning about it can be frightening. But, after a spell, we usually begin focusing on the more positive aspects of it -- the terrific examples of people who have somehow happily coped with far more than we will probably ever encounter, the wonderful friendships, and the sense that we can go on with life, even exuberantly. Severe illness puts special demands on all of us, to quickly expand our methods of coping with stress, to build a stronger support network, to learn how to be more flexible. We learn, if we haven't already, that happiness is an attitude that is entirely independent of our circumstances; we can choose to be happy in spite of everything. We don't have to give up living, in fear of dying; if anything, we have even more reason to wring happiness and joy out of every single moment! Some of us need counseling and/or medications to help us over the hump, especially if we have not encountered major situations before that have forced us to develop additional coping techniques. Embrace all the new opportunities to learn and grow through it, and a little while down the road, you'll be able to greet others who are newly diagnosed with your special insights on how to get through the hurdle stage. You can do it, and in fact you already ARE doing it, by joining this support group and sharing how you feel about it all. The people who don't do as well are those who avoid the whole issue in the first place. By avoiding learning about the illness and seeking support, they also do not learn how to take care of themselves properly.
  19. Hi Jennifer, I may be wrong (I often am! And I have no medical training at all, so take all this with a grain of salt and check with your medical team) but I think it's more the Cellcept that is causing the worry about infection from a biopsy, rather than scleroderma itself, because Cellcept is an immunosuppressant that increases the chance of infection. So generally it's a good idea to avoid optional procedures that might inspire an infection, and they may want to weigh the symptoms and potential causes more carefully than they would with an entirely healthy person. I had a hysterectomy, which cured endometiosis with many adhesions, decades ago. I may be wrong, but I don't think irregular periods are a specific symptom of endometriosis. In my experience, it was a very painful and longlasting condition. There are many causes of irregular periods, including things as simple as stress, weight loss, and vegetarian diets. You may want to make sure you have explored all the possible causes with your doctor, and all symptoms of endometriosis, before pursuing a biopsy. It's usually diagnosed with laparscopic surgery...but still, you would be at somewhat greater risk of complications, due to the Cellcept. See our Autoimmune Diseases: Endometriosis section for a little bit more info, including 3 personal stories.
  20. Our Sjogren's page including treatments. Biotene products are specially made for dry mouth, and are available over-the-counter in drug stores. It's also possible to just have dry mouth, without having Sjogren's. Sometimes it is a side effect of medications. Our Xerostomia (dry mouth) section in the Dental Involvement page reads: People with dry mouth are more likely to get periodontal disease, cavities, and dental infections. Dry mouth can also make it difficult to eat, speak, or swallow. Drink at least eight glasses of water a day, and drink water during meals to ease painful chewing and swallowing. Increase saliva by using saliva substitutes, gargling or sipping club soda, or using sugar-free lozenges or gum. Brush and floss diligently. Avoid dry, spicy or acidic foods and tobacco and alcohol as these have a drying effect. Instead, eat foods such as gelatins, yogurt, potatoes and melons. Use Biotene toothpaste, mouthwash, ointment, and chewing gum or similar products, which you can buy over-the-counter or on the Internet.
  21. Hi CED, My first thought was calcinosis, too. Mine began as little bumps over my finger joints (several all at the same time). But they were rather firm, raised, and they itched a little, too (or felt irritating). Eventually I rubbed/scratched them a bit too much and they drained. Please note that is not the recommended medical treatment for calcinosis, of course! Back then, I just had no idea what they were, and I was fascinated with the milky and bumpy stuff that came out of them; its not yellow like pus, and not clear like a water blister. But my second thought is, you describe the bumps as clear and that they don't itch. So they might be water blisters. "Water blister — the most common form of blister. It is filled with a clear watery fluid that does not contain pus from an infection and does not contain blood." Just keep an eye on them. If they are water blisters, they should eventually pop and go away on their own. If its calcinosis, you'll know it sooner or later, but since you say it looks clear and doesn't itch at all, I rather doubt it. None of us are doctors, of course, no medical training at all, see your doctor for all new symptoms, etcetera.
  22. Hi TJ, Welcome to Sclero Forums, we are happy to have you here. Regarding pain control, as it happens, we aren't able to discuss the high-power pain meds here, due to the unfortunate prevalance of drug-seeking addicts on the Internet. They like to join boards like ours and seek out people who might have access to good drugs they can either buy, or burglarize <sigh>. That's a sorry situation, isn't it? If you are apprehensive about your pain control management, you may want to get a second opinion, perhaps from a scleroderma expert. Intrathecal drug delivery systems are implants that deliver measured doses of high-powered pain killers directly into the spinal cord. See our Scleroderma Experts list for a specialist center. They can work with your local rheumatologist to help deliver the best and most up-to-the-minute care.
  23. Hi Barbs, But you know how we are into relabeling around here...pain being an "interesting sensation" or a "more interesting sensation than usual", and being on oxygen a "great opportunity to breathe really fresh air" -- we are rather merciless when it comes to making the best of a bad situation, aren't we? Thus, in ISN-speak, you did not burn the roast potatoes. You simply expanded your culinary horizons to include Campfire Potatoes (aka Burnt Potatoes). :blink: You'll have an absolute blast with the program, I'm sure. Although I don't see how it would be possible for your program to stay on topic in the long run, and not evolve into a comedy show.
  24. Hi Karen, You are lucky to live in Michigan -- there is a major scleroderma center at Ann Arbor. If your insurance allows it, it is always great to have a scleroderma expert on your medical team, as the majority of rheumatologists may only encounter one or two cases in their entire career...and then quite often, they hardly know how to diagnose, monitor or manage it, when they do happen to stumble upon one.
  25. Hello Karen, I'm tickled pink that you posted in our "Getting to Know You" thread. I can see why you chose that avatar. It seems to me that your diagnosis took at least 12 years, maybe more, so I'm not sure I'd agree that it was quick and easy compared to others. It sounds like you have a wonderful hubby...I hope he knows that he has to really crank up the heat in the ice house when you're in the shack. With that and some really good thermals, you might be fairly okay. Anyway, welcome aboard, we're thrilled to have you join us -- and also I sent my hearty Welcome to everyone in this thread that I've missed.