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Shelley Ensz

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Everything posted by Shelley Ensz

  1. Shelley Ensz

    Bcbs Denied My Stem Cell

    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.
  2. 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!
  3. Lisa, how did your Pampered Chef party go last night?
  4. 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!
  5. 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.
  6. 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
  7. Shelley Ensz

    I Am At A Loss...very Confused

    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.
  8. Shelley Ensz

    Jaw Pain

    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.
  9. Shelley Ensz


    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!
  10. Shelley Ensz

    Scleroderma Awareness Bracelets?

    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
  11. Shelley Ensz

    Scleroderma Awareness Bracelets?

    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.
  12. Shelley Ensz

    The Forum Has Liked...

    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!
  13. Shelley Ensz

    A Lesson To Be Learned...

    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.
  14. Shelley Ensz

    Never Ending Ulcers!

    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.
  15. Shelley Ensz

    I Give Up

    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.
  16. Shelley Ensz

    Scleroderma Awareness Bracelets?

    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.
  17. Shelley Ensz

    Getting To Know You - Archives

    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?
  18. Shelley Ensz

    Riding Out The Storm

    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! ;)
  19. Shelley Ensz

    In Loving Memory Of Beryl Blatt

    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.
  20. Shelley Ensz

    Could Be Trouble

    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!
  21. Shelley Ensz

    How To Get Out Of Depression

    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.
  22. Shelley Ensz

    Update On Sct

    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.
  23. Shelley Ensz

    Finding Pcps

    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.
  24. Shelley Ensz

    I Hate Scleroderma! Please Help...

    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!