Shelley Ensz

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Everything posted by Shelley Ensz

  1. Hi Diana, As I understand it, it's quite common for relatives of people with autoimmune disease to also have one or two symptoms of it themselves, without developing full blown disease. Even if a blood test was positive for something, it wouldn't "prove" that he had the illness, since relatives often have some positive antibodies without it ever developing further, too. So, although I certainly understand the worry of it all, perhaps you can find some slight reassurance in the idea that Raynaud's is very common in the general population, but scleroderma is very rare; and scleroderma is even much more rare among males. Do take him to the doctor for evaluation, diagnosis and possible treatment. He should at least learn how to avoid and minimize attacks and to respond to them promptly and properly. But blood tests wouldn't prove anything at all, in the absence of other telling symptoms. So you may want to consider just advising him to always have an annual physical, to report any new symptoms to his doctor, and to always report his full family medical history. They figure scleroderma is hereditary in about 2% of cases, I believe -- and even then, it's rare in families even where there is a hereditary predisposition. So, somewhat of a balanced approach to it all -- a middle ground between just avoiding it or shrugging it off, or total panic over the worst possible outcome. His doctor may not do any tests at all. Many of them will simply diagnose it based on the description of the attacks, and then take the treatment plan from there. Just having the diagnosis is half the battle, since then you can teach him ways to avoid attacks. For teenagers, that often involves changing hobby and sports activities, such as selecting summertime or indoor sports instead of rugged outdoor winter sports. I'm sorry he has Raynaud's. But odds are in his favor that will be all he has, thank goodness.
  2. Hi Sweet, I'm sorry to hear you have fibromyalgia, on top of everything else. It's on my list of things I'd most love to give away, but even the friendly folks at the thrift store won't take it! :huh: Piper, I am still trying to figure out what your doctor meant by "grumbling disease". I sure hope they weren't implying that people with UCTD are simply complainers! They should walk a mile in your shoes and they sure wouldn't make comments like that any more.
  3. Lisa's Online Pampered Chef Party for Scleroderma is still in full swing! You are invited -- and we also encourage you to tell all your friends and family about it, and send them the link so they can participate too! Also, feel free to post in this message thread about your order or any questions you have. The link: Online Pampered Chef Party for Scleroderma!
  4. Hi Sweet, I'm sorry to hear you also have fibromyalgia. It's quite a bundle to deal with, just in itself. For others who don't know what it is, we have a very long page on Fibromyalgia. But think twice about putting a swimming pool in your home unless you can make sure its kept very warm (for the achiness and Raynaud's.)
  5. Hi Janey, My goodness, that's a lot to deal with at once, and a lot of decisions made. I'm happy for you as all the steps sound like they will be an improvement. And getting a permanent fix for fluttering, that sounds terrific!!
  6. Hi Celia, I am sorry that you are having tendon problems. Tendonitis is one of the symptoms of scleroderma. See our Systemic Scleroderma Symptom Checklist, which is in a PDF brochure that you can print off and take to your doctor. Also see our page on Skeletal Involvement regarding this.
  7. Hi Trudy, Oh my goodness, you're not actually human, like the rest of us, are you? :P I find it is a million times easier to worry about someone else, than about myself. It is lots more comforting to worry from a tiny bit of a distance, don't you think? I'm just sorry you figured that out, while there is still time left to worry about your own pending diagnosis. The best I can recommend (and I am extremely aware that this sounds trite) is to try to keep as busy as possible with distracting activities, also known as hobbies. But I don't think any of us got through the initial phases without a fair amount of worry, unless we have cohorts made of steel who haven't introduced themselves to us yet.
  8. Hi Nancy, It's great to have you join our forum and I'm sorry its because your husband has scleroderma. As it happens, to the best of my knowledge (and I am not a doctor; I have no medical training at all -- and I may be wrong, I often am!), I'm not aware of calluses being a symptom or a part of any type of scleroderma. It's my understanding that they can be caused by many things, including foot problems and poor fitting shoes. The ideal thing would be for him to consult your family doctor, or a podiatrist (foot doctor) who can tend to the calluses and create a treatment plan for them, including showing him how to properly (and safely) remove the calluses. I happen to prefer leaving a lot of callus intact, because removing it sometimes makes my feet more sensitive. If by any chance what you are trying to refer to is that your husband's feet are otherwise severely affected by scleroderma (like with the toes hardening and curling, or with patches of morphea scleroderma) then he would absolutely need advice from a scleroderma expert, first of all, since there is no herbal remedy (that I'm aware of yet, at least) proven to treat scleroderma, and it can become quite disabling when it affects the feet. We have a list of Scleroderma Experts that you may want to have your husband consult. I should say, that you might hear from many people in our forum who have calluses and who also have scleroderma. It is inevitable, since calluses are extremely common; but scleroderma is, thankfully, quite rare. In any case, it's great to have you here, and I send your husband my best wishes.
  9. Hi Monica, Although many of us may have had similar things, it would be important for you to have the rash examined by your doctor. It may be extreme skin dryness, a medication side effect, or even another skin disease (like eczema, psoriasis, lupus, or fungus). That's strictly for the doctor to figure out, not you nor us. As you can see, the most we can offer is some clues or encouragement to have it examined by your doctor or dermatologist. Some medications like plaquenil make psoriasis even worse, and some may make you more susceptible to skin infections. If you think the rash might magically clear up before your appointment, which is always a good possibility, take a picture of it right now and any time it changes or progresses, so that the doctor doesn't have only your word or verbal description to go by. The remedy may vary a lot, depending on the actual cause of it. I used lotions and prescribed cortizone creams and shampoos for many years for what turned out to be psoriasis, which was much more effectively treated by full spectrum light therapy. I could have moisturized til the cows came home, and it wouldn't have changed it at all. And light therapy won't do any good if it is caused by other things, and certainly not along with medications that cause extreme light sensitivity. So it's not a good idea to let it go, and it is a good idea to see the doctor, hopefully while the rash is at its freshest, and nicely in full bloom!
  10. Hi Aunt Turtle, I'm sorry you have a pending diagnosis of scleroderma with lung involvement. Thankfully, I have excellent news regarding your granddaughter (at least), which is that dry skin on the elbows and heels is entirely normal and is not a symptom, in any way whatsoever, of scleroderma. Try tending her with a skin exfoliating scrub and any moisturizer throughout the day, and especially right before bed. If you don't have any skin scrubs on hand, you can just mix a batch of table salt with olive oil (or any other cooking oil) so that it is a nice, mushy consistency -- plus vanilla or almond extract if you have some around, just for a pleasant fragrance. Scrub it gently on the skin, with a little water, let it sit for a minute or so (to soak in the oil) and then rinse off. We make up a big batch of this at once, and use it every day -- especially as a face scrub, and on elbows and feet. Give her an extra hug, just from me!
  11. What a thoughtful and wonderful idea, Jefa! We truly appreciate your support...every bit counts for tackling scleroderma. We invite everyone to see what they can do for our cause. To join, donate, buy ISN Voices of Scleroderma books, or scleroderma awareness bracelets, just go to our secure ISN online shop at: ISN Donations and Ordering http://www.sclero.org/secure/index.php
  12. Hi Gidget, I'm sorry that your appeals for the stem cell transplant haven't worked so far. Usually the medical center conducting the stem cell transplant would have a resource person who would help you with this. Have you been working with them on this? What do they advise? I have heard that sometimes people have hired a lawyer and go to court to get the procedure approved by their insurance company. The legal cost can run into thousands and thousands of dollars, however it is less than paying for the procedure out of pocket. But because of this, very often the most likely candidate for a stem cell transplant is a very wealthy person with great insurance, who also happens to have severe rapid onset diffuse scleroderma. We do have an ISN Legal Advisory council, however, that is for our nonprofit organization as a whole, and not for personal legal assistance, since providing legal assistance is not part of our authorized mission. If you cannot afford a lawyer, you might also try contacting your local Legal Aid society, to see if they can offer any help. It may require sound medical and legal advice to acquire (or try to acquire) coverage.
  13. Share the fun and excitement! The direct link for Lisa's online Pampered Chef party to benefit scleroderma is: http://www.pamperedchef.biz/christine?page...;showId=1010818 That link goes directly to the page for the nonprofit International Scleroderma Network, and it is good from now until April 5th. Just start browsing and shopping straight from that link. You may pass the link on to everyone you know, and enjoy shopping (and cooking) to benefit scleroderma research, support, education and awareness!
  14. Lisa, how did your Pampered Chef party go last night?
  15. Wow! That was fun. Imagine, we even got corn cob holders that can be boiled right in the water and come out cool. I had a hard time finding the Order Products "button" since it is a big graphic with a bright flower on it (not a link or a usual button). Also, when selecting the shipment options, be sure to select Direct shipment rather than having things sent to Lisa...unless you'd really like to go to Massachusetts to pick up your order. And, I first noticed the shipping charges that were in the right-hand column, which are for people outside of the contiguous United States. So I was relieved to see the prices to the left of that, for inside the U.S. I had a great time at the party....bag clips, corn cob holders, carving and paring knives, hors d'oeuvre cutters, a little thing that makes pocket sandwiches out of bread or dough, a handy slotted spoon, Southwestern seasoning. Mmmmm, the fun we are going to have cooking around here! The Pampered Chef fundraising link is: http://www.pamperedchef.biz/christine Click on the flowered box near the bottom left that says "Order Products". Enter the name: International Scleroderma Network . (You may want to copy/paste that to make sure the spelling is correct.) Browse and order. Make sure you have the products shipped to your house and not Lisa's. :blink: And enjoy your time of shopping and cooking for charity, to benefit the nonprofit International Scleroderma Network!
  16. Thank you, Lisa, this is so great. I'm on my way to shop now! Remember when using or passing on the link that it is extremely important for them to also enter "International Scleroderma Network" as the organization name.
  17. I can't hardly stand the suspense! When are we all gonna get to go to the Pampered Chef Party?! Okay, I'll try to be patient. But it's going to be fun Shopping for Scleroderma. Oh, er, Cooking for Scleroderma. :P
  18. Hi Sakar, It varies a lot from state to state, but usually its rigged so that people who receive SSDIB are not eligible for Medicaid. I think the idea is that it pays so much more than SSI that you can thus afford to buy your own health insurance. Also, some states (including Texas) have a "health insurance risk pool" offering (paid) coverage to people who are uninsurable. You may want to call them again and talk to another worker or a supervisor, though, and see if there is any way you could still qualify for Medicaid. You might be just a few dollars off. For example, they might not allow someone who had $3,000 in savings, but would allow someone who had $2,999 in savings. So spend the $1 down at the thrift store, and voila, you have qualified. I know someone who actually took a cruise to the Bahamas to spend down their excess assets quickly, to qualify for Medicaid! Frankly, I would think of that as cheating, since of course they could have paid insurance premiums for a year or more with the same money. So I'd frown on a move like that (much as I'm sure a cruise to the Bahamas would be wonderful)...but it may be as simple as you owning a car that is "too new" or "too expensive", in which case you might modify your transportation choice, if that's all it takes to get your coverage back. But, if you do have excess assets of any sort (in the thinking of Medicaid)...why not use them to buy insurance coverage? It's certainly what you would need most right now. And if you don't have excess assets, find out exactly what it takes to qualify, to see if there is any chance you might be able to make yourself eligible.
  19. Hi Theresa, Welcome to Sclero Forums, we are very glad to have you here. I am sorry that your daughter has en coup. I have no medical training at all, but it would be more likely that this is due to dental problems (such as teeth grinding in her sleep) or stress (clenching jaw, causing muscle tightness) or progression of the en coup (spreading down farther) rather than a side effect of medication. It would be necessary to contact her doctor to sort it all out, of course. Unless it is a tooth abcess, it can probably wait until next week, I would think. But do not discontinue the meds with the thought that they are the cause (unless or until the doctor confirms that idea); more likely, they are preventing the situation from being even worse, if it is due to the en coup.
  20. Hi Nancy, I'm sorry you are having a frustrating experience with doctors. I may be wrong (I often am!) but I think one way out of it would be to forget the idea of a rheumatologist, GI and hematologist combination working together to find the answers. Unless you are in a very large and very well-coordinated clinic that is devoted to teamwork, that is not very likely to occur. So instead, I'd like to suggest the idea of looking for a great internist (internal medicine doctor). To do that, first select the best hospital in your area that you'd prefer to go to in the unfortunate event you'd ever be hospitalized. Contact that hospital and ask them what internal medicine clinics or doctors have admitting privileges there. Call those clinics (perhaps the ones nearest to you) and see if any of their doctors are still accepting new patients. Then inquire about the background, training and interests of each of those doctors. Tell the receptionist or nurse your situation (very briefly!), and ask which doctor they'd pick if they were in your shoes. Once you have 3 top picks from 3 different clinics, set 10-minute get-acquainted meetings letting them know that you are interviewing the doctor to see whether or not this would be a good fit. (There is often no charge for that type of appointment, but make sure of that, of course.) Having a selection of 3 doctors will change your perspective, and give you the time to ask questions to see whether this is the right doctor for you. I've found that my gut usually delivers an instant "Yes!" or "No Way!" but I still take the time to go through all my questions, in case Dr. Yes turns out to be all charm but no substance. Make it clear to your new internist that you would expect them to be the point person for all of your medical care, coordinating things between all the specialists. If you have a great internist, odds are fairly good that they will work hard to refer you to equally great specialists. And while waiting on a diagnosis from specialists, you can still get your symptoms taken seriously and treated properly. It's certainly a lot of work. But you wouldn't believe the huge difference it can make in arranging for a proper medical team!
  21. Hi Lynn, I'm sorry you encountered issues trying to order the bracelets. If you select the PayPal option while checking out, then there are even more payment methods. You can also email me, to let me know exactly what error message you received, and that can us a give a clue as to how to resolve it. And you can always try again! One tip is to not enter dashes or spaces when entering your credit card number; and do use the same name and address that the credit card is registered to; and do remember to fill in the box for the credit card verification number. Usually its the very simple things that interfere with credit card processing. But if you'd like to skip trying that approach again, you can send payment (in U.S. dollars) by mail, with a note saying what you'd like. Or to be fancier yet, you can fill out our print and mail form. All the options are at: http://www.sclero.org/secure/index.php
  22. Hi Lyndylou, You can order the bracelets through our secure online order processing (with a credit card or PayPal); or order by mail (with check or bank draft or money order) using our Print and Mail order form. People in the United States can also order via our 1-800-564-7099 hotline. For overseas, our direct dial number is 1-952-831-3091 -- but that is at your own expense. However, if you leave a number we will call you back. These options are all in the checkout process for our ISN online ordering at: Scleroderma Awareness Bracelets. The bracelets are available for pre-order for shipping on April 1, 2007. They are $2.50, which includes free standard shipping.
  23. Welcome to the forum, Denny! Are you from the Ukraine, by any chance? We have a story from one of our site visitors in our Voices of Scleroderma book series, who was a teacher in the Ukraine. Our Russian pages are online at: ISN: Scleroderma from A to Z: Russian Version We're glad to have you join us!
  24. Most unfortunately, I'm not so sure there would be a case for disability discrimination. Of course, keep in mind that I'm not a doctor nor a lawyer nor a disability expert of any sort! But businesses with less than 15 employees are not covered by the Americans with Disabilities Act (ADA). As I understand it and generally speaking, in the U.S. most employment is considered to be "at will", meaning that the employee can quit at any time for any reason, and the employer can terminate an employee at any time for any reason (or no reason at all). There are some exceptions by states...but even then, I think the exceptions apply to larger employers. I know that a lot of people think that people who are sick can never be terminated from a job...but there are holes in that idea big enough to drive a truck the size of Texas through. Unless there is a contract or law that says otherwise, it is probably employment at will.
  25. And the link to Mary's online support group for quitting smoking can be found on our main site at: Preventive Care for Pulmonary Fibrosis.