Jump to content
Sclero Forums

Shelley Ensz

Administrators
  • Content count

    3,637
  • Joined

  • Last visited

Everything posted by Shelley Ensz

  1. Stuck

    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!
  2. Tender Spots

    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:
  3. Choosing Between Two Lawyers

    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.
  4. Getting To Know You - Archives

    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.
  5. Endometriosis

    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.
  6. Dry Mouth

    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.
  7. Anyone With Bumps On Fingers!

    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.
  8. Intrathecal Drug Delivery System

    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.
  9. No Stopping Me! Exciting News

    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.
  10. Getting To Know You - Archives

    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.
  11. Getting To Know You - Archives

    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.
  12. Raynauds In Shower?

    Hi Dave, Yes, I find the same thing whenever the water temperature is too hot. Raynaud's can happen with too hot or too cold, but most people seem to be okay with the "too hot" part. I even have to be careful using rewarming devices, since sometimes they are so hot that they prolong the episode for me. To resolve the situation, take only moderately warm showers. Start the water running a few minutes before you get in; memorize where the dials are so that you can get the same temp every time, and be sure to stay in the warm zone, never too warm nor too cool. The room temperature also needs to be warm for me...if it is too cold, yikes, I can nearly turn blue from head to toe. Even use a space heater if you need to, and make sure the room is toasty before showering, then dress (warmly) immediately after.
  13. No Stopping Me! Exciting News

    Hi Barbs, Why am I not surprised? Well, I am, actually. Since you are on a feeding tube, I wouldn't have ever thought in a million years that you'd be hosting a radio cooking show. But its a tremendous idea, I'm sure you'll be terrific at it, and I am thrilled for you! I suppose sometime or other, you might let it drop that you are our blogger...and that you were famous long before they came along, with your story in the Voices of Scleroderma book series. You know, I just realized -- what's really cool about a radio cooking show, is that you don't actually have to cook anything! Now, that's my idea of the best job of all. :P
  14. New To Forums

    Hello Diana, Welcome to Sclero Forums! We're delighted to have you join us, although sorry that it's because of scleroderma. We'd love to hear more about you, too. Speaking of which, a terrific thread for old or new members to post an introductory message in is at: Getting to Know You and it is also a good place to read about other forum members, to help find those that you may especially relate to.
  15. Do you admire the photos next to people's messages in the forum, and wish you could have one of your own? The photos by messages are called "Avatars", as opposed to "Profile Photos" that only appear on your forum profile page. You may upload a photo of yourself, or use one of our lovely avatar photos or drawings. Before using an identifiable photo of yourself, please read our Forum Guidelines, particularly: Safety and Privacy Our forum messages can be read by everyone, including our spouses, children, doctors, employers, disability examiners, friends, neighbors, credit agencies, landlords, schools, insurance examiners, lawyers, thieves, cyber-criminals, police, courts, stalkers, pedophiles, ex-mates, and potential employers...even many years later. Always guard your privacy, safety and decorum on the internet. Select a unique, unrevealing nickname and username, in keeping with our neutral zone policy. If you would like, our ISN artists can retouch your photo to make it personal but still unidentifiable, such as by adding an eye mask or humorous element. Simply email your photo to [email protected] with your request or any special instructions and we will create your avatar and upload it for you. We will also gladly do this upon request for anyone who already has an identifiable avatar posted. We also have a lovely collection of avatars that were designed by ISN Artists. There are hundreds to choose from in many categories, including Animals, Birds, Butterflies, Flowers, People, etc. To pick out your avatar: 1. Go to My Controls, which is linked near the upper right hand corner of each page. 2. Down in the left-hand column you will see Personal Profile. Click on Avatar Settings. 3. On the avatar page, you will see a dropdown list of categories, starting with Animals. Select a category from the list and click the GO button. 4. Click the radio button by the photo (avatar) of your choice and then click the Use Selected Avatar button. That's it! All your forum messages will now display with your lovely new avatar. 5. You may need to hit REFRESH in your browser to see the changes on the forum pages. You may also upload an image from your computer for use as an avatar. They must be under 50KB in formats of GIF, JPG, JPEG, or PNG. The final size we actually use is 90 pixels wide, and usually about 4KB in size. You will get best results if you shrink your photo down to that size before uploading. A good free online graphics shrinking program is: http://www.shrinkpictures.com/ . If you don't know what that stuff means, just pick one of ours. You may change your avatar at any time. What are you waiting for? Today is a great day to play with avatars and to add some color and interest to your Sclero Forum posts. We dare dare double-dare you to get a new or revised avatar right now. ;)
  16. How To Add A Secure Avatar To Your Forum Messages

    Thank you, Jude! I'm hoping more members will go to "My Controls", find their Avatar Settings and select one of our delightful FREE avatars to liven up their Sclero Forums messages with lovely photos or artwork from our fabulous ISN artists!
  17. Basal Cell Skin Cancer

    Hi Ani, I may be wrong (I often am!) and I don't have any medical training. But I'm not aware of any particular association between scleroderma and Basal Cell Carcinoma, other than the fact that its the most common form of skin cancer, so inevitably some people with scleroderma would also have it. See Nonmelanoma Skin Cancer by the Mayo Clinic. "A physician should be consulted if a person experiences skin changes, such as a new lump or an abnormally shaped mole. In general, skin lesions that remain more than two months are more likely to be skin cancer than those that go away in that time." If you have any suspicious skin changes, please see a doctor soon. They can biopsy the skin and diagnose it fairly easily.
  18. What To Do For Fatigue?

    Hi Irene, We also have another thread on prednisone, entitled Wonder Drug. But please don't be deceived by the title. Here is an excerpt from my message in the thread: "I'm very glad for everyone who has found relief with prednisone, and I really don't want to rain on anyone's parade, as I know how precious even a few moments of relief can be! Unfortunately, prednisone is strongly associated with kidney failure in people with scleroderma, and with pneumonia (increasing the risk by 70%). Even low-dose steroids can cause irreversible loss of brain tissue in people with autoimmune disease. Thus it is strongly recommended to try to avoid corticosteroids (such as prednisone) in people with systemic scleroderma. See a Glucocorticoids, Steroids (Prednisone) Warnings for Scleroderma . When avoiding it simply can't be done, work with your medical providers to try everything possible to keep it to the lowest dose. As Mary so aptly points out, you don't need to be on it very long for severe and irreversible problems to begin -- and scleroderma puts us at greatly increased risk of severe (and even deadly) side effects from prednisone and other corticosteroids." Also, this is absolutely not the drug to take in order to lose weight! It is strongly associated with weight gain...almost inevitably so, since it dramatically increases the appetite and can also cause fluid retention.
  19. Tinnitus? (buzzing In Ears)

    Hi KellyAnn, I also have tympanosclerosis in both ears, which has caused slight hearing loss in one ear and intermittent tinnitus (ringing in the ears). My eardrums are also scarred, and create the optical illusion that I always have water on my ears. It was only caught after all the damage was done, so I didn't need to have any treatment for it. You'd definitely want to consult an ENT (ears-nose-throat) doctor for evaluation and diagnosis. There are many possible causes for tinnitus -- including medication side effects, such as from aspirin and some antibiotics. It can even be caused by a haircut, if some hairs get wedged into the ear. Thus, like many symptoms, the cause could range anywhere from silly to serious. Don't just assume it is from a haircut, or from scleroderma either. It might be an infection, which could be treated right away and put you out of your ear-ringing misery for good. My (old) internist just kept telling me I had water on my ears when I complained of the tinnitus so it was months before I saw an ENT. That's why a medical evaluation from an ENT is probably paramount, unless your internist is really great with ear problems. Let us know how it turns out.
  20. Interstitial Lung Disease

    Hi Jennifer, Good question. I think the answer is No. It's my understanding that only a small percentage of people with pulmonary fibrosis go on to develop pulmonary hypertension. If I remember correctly, a majority of people with systemic scleroderma eventually develop pulmonary fibrosis (to a greater or lesser degree), but only a small percentage develop pulmonary hypertension. For the actual facts of the matter, visit: Pulmonary Fibrosis and Pulmonary Hypertension. And, of course, please correct me if I'm wrong, as I often am! I have no medical training at all, bladda bladda bladda....
  21. Water Aerobics

    Yes, it is safe for people with autoimmune diseases to swim...provided we know how. :blink: And we won't contaminate the pool by swimming in it (since autoimmune diseases are not contagious, of course). I'm always surprised by how often people assume (or fear) that scleroderma or similar diseases are contagious. So it never hurts to reassure them, particularly when we are sporting interesting skin features, like rashes or skin tightening. An exception is if you have any open sores, unless you can figure out a way to protect them. I am able to swim with head sores by using a snug swimming cap (that doesn't leak). But I've been sidelined for several months now with an infected toe. So if you tend to get a lot of open sores rather often, you might need to miss some classes. Inquire about their refund policy before registering, if missing classes might be a significant issue for you.
  22. Great News Today

    Hi Lisa, I'm completely thrilled that Grace has had her surgery and come through with flying colors. It must be a tremendous relief for all of you!
  23. Hi Meeta, Uh, make that hugs to Aadhaar, not Adahar. DUH. :blink: On behalf of our entire volunteer team, thanks for your kind words about our website, Meeta.
  24. Dear Meeta, I'm very glad you are finally beginning to get some answers for Adahar's illness. We have a page on our site about Scleromyxedema. I hope you find it helpful. And here is some treatment information from that page: IVIG and Thalidomide Combination is an Effective Novel Therapy for Scleromyxedema. In the majority (83.2%) of cases, an abnormal paraproteinemia is present. IVIG and thalidomide combination is an effective novel treatment of scleromyxedema with systemic involvement and associated light chain monoclonal gammopathy. Petros Efthimiou. ACR Conference Oct. 2003. Give some warm hugs to Adahar for us, of course!
  25. Radio Star

    Hi Barbs, Congrats! I am very glad that you helped raise awareness of Raynaud's with the radio interview in the U.K. I'm willing to bet you gave great information, and I'd be surprised if you were not an absolute stitch. I was finally able to meet Anne Mawdsley in San Diego in 1998. She was at our first Scleroderma Webmaster's Association Meeting, along with her friend Ann Phelps, who runs the Irish association. She's very special! Kudos on raising awareness of Raynaud's!
×