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Shelley Ensz

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Everything posted by Shelley Ensz

  1. Shelley Ensz

    Actual Test Results?

    Hi Kelly, You ask some good questions! In order to get your test results, you need to go to their Medical Records (person or department) and sign a release asking for a copy of your medical records, and specifying which ones. You may have to pay for them if you only want them for your own personal use. However, if you are collecting them for a consultation with other doctors, indicate that on the form, then the copies are usually free. It is a great idea for you to then make copies for your own records, before sharing them with any other doctors (sooner or later). I've been completely astounded by some things in my medical records, from the sublime to the ridiculous. I've been credited with having a lovely manicure with red nail polish (which I know I didn't have at the time)....much to my dismay, one doctor said I had had a heart transplant, and refused to correct it when I pointed out the error, saying that it didn't really matter....and most of it I had to check online medical dictionaries to make any sense of it at all. I was very insulted when one doctor wrote "SOB!" in large letters, and only later did I learn that stood for "Shortness of Breath". So prepare for an adventure as you wade through your records, and never hesitate to ask your doctor for more in-depth explanations when you want them.
  2. Shelley Ensz

    Scleroderma Registry & DNA Repository

    That's terrific, Jennifer!
  3. Shelley Ensz

    Pregnancy & Crest

    Hi Kristi, Pregnancy with systemic scleroderma is something you need to discuss with your whole medical team. We have a page on it at: Pregnancy and Scleroderma They strongly advise that women with systemic scleroderma (which CREST is) should be counseled by an obstetrician and a rheumatologist BEFORE attempting to get pregnant. Especially if you think you may have pulmonary hypertension, that would be something to get a definite answer on before attempting pregnancy. They used to say that women with scleroderma should never get pregnant. In recent years they have backed off that advice, for most people, but despite the much rosier outcomes overall than the researchers expected, it is still considered a high risk pregnancy that requires special preparation and monitoring. One consideration would be what your childcare arrangements would be, should you become sicker. For example, do you have a lot of family and friends nearby who could step in to provide care, should you become bedridden during the pregnancy or in worse health afterwards? But it's not impossible! So if you're feeling tempted by the idea, start discussions right away, both with your medical team and with your family. Since you are already ill, it would be much more of a team effort for everyone and you would want to attempt it properly and at an opportune time (when the illness is under fairly good control, when your meds have been properly adjusted, since many of our meds cannot be taken during pregnancy. And so forth.)
  4. Shelley Ensz

    Choking In Sleep

    Hello Bird Man's Wife, This would definitely be something to mention to his doctors, especially since it has happened more than once in the last week. It could be he has worsened lung involvement, infection, heartburn, asthma or whatever. Odds are, it may be something treatable, and they do want to keep a close eye on people who are on cyclophosphamide. So please mention it to his doctors, and let us know what happens.
  5. Shelley Ensz

    Carrie Maddoux: Isn Sclero Forums Manager

    Carrie, you have no idea how much it means to all of us, and to Heidi, to have you so capably taking over as Manager. You have some extremely large shoes to fill, as she has been superb in all areas over the past five years. But you are doing marvelous, and I am thrilled to welcome you as our new Sclero Forums Manager. It's nice for us, of course, but also super for Heidi so that she can get a real respite without feeling that she has left anything unattended around here. We do truly have the most wonderful support team there ever was, and as you can see, everyone will pitch in, as always, to try to make your role as easy as possible, too. Thank you for joining our support team, and thank you for now leading our Sclero Forums!
  6. Shelley Ensz

    Scleroderma Registry & DNA Repository

    Hi Jennifer, We have a page about the Scleroderma Family Registry and DNA Repository on our main site, at: http://www.sclero.org/scleroderma/research/reg...ada/a-to-z.html People can join all the registries that they are eligible for, since they are not like clinical trials, where you can do just one at a time. We strongly encourage eligible patients and family members to enroll in the Scleroderma Family Registry and DNA Repository. The Scleroderma Family Registry contains information including the the patient's name, gender, ethnic background, optional social security number, address, phone number, date of birth, as well as information such as date of diagnosis, type and severity of scleroderma, and results of some laboratory tests and x-rays. All information is kept confidential. To enroll, contact: Marilyn Perry Coordinator of the Scleroderma Family Registry University of Texas Health Science Center at Houston 6431 Fannin Street MSB 5.270 Houston, TX 77030 Toll Free: 1-800-736-6864 Local: 713-500-7196 Email: [email protected]
  7. Hi Heidi, Mere words can't say how absolutely fabulous you have been as Sclero Forums Manager all these years! My goodness, it is nearly impossible to imagine you not being Manager. You've been an absolute delight to work with, always keeping us on track with everything -- and making it seem effortless to provide nonstop love and support and information for our members, 24 hours a day, 365 days a year! I hope you have a terrific time off, for the next few weeks. I miss you already! And I look forward to hearing from you again very soon. You've always been simply de tops, in every way. And to top it off, you've done a tremendous job in selecting and training Carrie as our new Manager, too, making it a completely seamless transition. Well, I have tears in my eyes, so it's hard to keep on typing. Hurry back!!!
  8. Shelley Ensz

    Is It A Wart?

    Hi Louise, If you have systemic scleroderma, see your doctor right away (like this week, if you can) because it might be a wart, a good ol' fashioned blood blister, or possibly even a digital ulcer. You would not want to ever use a wart treatment on a digital ulcer (yeowch!!) so don't monkey around with it at all until you have it professionally evaluated. And do not wait to try to get in to see your rheumatologist, either, if it usually takes months for you to get in with a rheumatologist. See your general practitioner, and take it from there. Most digital ulcers cause a lot of pain, but I've had some that didn't hurt much at all in the beginning, and a few that didn't hurt overly much (compared to other aches and pains) the whole time. Whereas, some can be real whoppers; and some people complain of really severe pain with them. It probably depends a bit on exactly where they occur, whether or not they are irritated (like by bumping them into something, not a good idea) and what nerves are (or are not) involved.
  9. Shelley Ensz

    Insurance Refusing To Pay Hospital Stay

    Hi Nan, Well, then, since your doctor should have taken care of it in their office (how crazy is that?), then you should probably just forward the bill for them to pay. :( But reasonably speaking, you need to file an appeal right away. I really can't see it's your fault that you weren't bleeding enough -- although perhaps you could make a mental note to bleed more profusely for the sake of insurance coverage, next time? Fact of the matter is, insurance companies will deny things simply because so many of us will pay up, and not appeal it. But it is truly amazing how often the decision is in our favor, upon appeal. So never just outright pay from the first denial -- exhaust all your appeal rights, first!
  10. Shelley Ensz

    I'm New

    Hi Janice, Welcome to Sclero Forums. We're glad to have you here, of course, it's just too bad it's because of scleroderma. At least your doctor shows she cares, and hopes that you will be okay. I'm with her on that!
  11. Shelley Ensz

    Question About The Voices Books

    Hi Jefa, That's a good question! Yes, there is an e-book version of our book that can be made available for people who have ordered the book, when it is ordered directly from Booksurge or from us (but not from other distribution channels). Patty, I'll send you a special link to download it. As soon as you have retrieved it, let me know (it is only for one user) so I can remove it from the server.
  12. Shelley Ensz

    Question About The Voices Books

    Thank you, Patty. Your book and cat toys are in the mail. ;)
  13. Shelley Ensz

    Question About The Voices Books

    Hi Patty, The Voices of Scleroderma book series are in about an 11 to 12 point, easy-to-read typeface, with excellent leading (space between lines, which also affects readability). Also, it is a large collection of short stories and medical articles by world experts, so it is not like a novel that is read from start to finish in one sitting. I think you would find it quite readable, but it is not in the very large print for those who are near-blind. If your vision is still in a correctable range, it may be time for new glasses. Also, magnifiers may help. I am an avid collector of magnifiers (I even have a whole drawer devoted to them) since they help me enjoy my hobbies and reading more, with less eye strain...and that's in addition to good trifocals. What I like about magnifiers is they are very cheap, and I can usually tell when I need to make an eye appointment by how many magnifiers I've bought in the preceeding months. I'm straying from the topic again <sigh>. You can purchase the wonderful Voices books straight from the ISN Secure Shops, if you'd like, for $25 including shipping. And Volume 3 is the best volume to get, if you can only get one.
  14. Shelley Ensz

    Hospital Stay For Anemia

    Nan, I'm very sorry to hear you were hospitalized for watermelon stomach. I really hope they get it under control for you. For those who may not know what Watermelon Stomach is, its medical name is G.A.V.E. for Gastric Antral Vascular Ecstasia. Watermelon Stomach does not make a large or bloated stomach (as many people assume upon first hearing of it.) Rather, it causes bleeding within the lining of the stomach, and the bleeding takes the odd look of watermelon stripes (when viewed by the surgeon, inside of the lining of the stomach.) The excessive internal bleeding from this causes anemia, which is discovered in blood tests, usually taken when someone is feeling exceptionally tired, but sometimes caught by accident during a routine check. The bleeding can be stopped with a laser surgery that cauterizes the bleeding. It often recurs in scleroderma patients, though, so it can become a chronic situation of needing blood transfusions and laser surgery. Watermelon stomach can occur by itself, without any other underlying disease process, or along with scleroderma. Our page on it is at: http://www.sclero.org/scleroderma/symptoms/gi/...on-stomach.html
  15. Shelley Ensz

    Recently Diagnosed With Crest

    Hello Kristi, Welcome to Sclero Forums. I'm very glad you found us, and we all look forward to getting to know you better.
  16. Shelley Ensz

    Erin Eton: ISN Support Specialist For Sclero Forums

    Welcome, Erin! We are truly delighted to have you join our wonderful Sclero Forums Support Specialist team.
  17. Welcome to the Sclero Forums Support Specialist team, Carrie! For those of you wondering who Carrie is, her screen name in Sclero Forums is "Jefa".
  18. Hi Sam, I'm very sorry to hear that. My thoughts are with you and all those who cared for her.
  19. Shelley Ensz

    Blood Clots

    Hi Craig, As you know, not everyone with blod clots has antiphospholipid. It sounds like it was wise for you to ask to be tested for it, though. I'd guess the second one was because of your medication level plus the inactivity together. It doesn't take very much inactivity to inspire a blood clot; I have heard of people getting them just by sitting in one position too long on an airline flight. Anyway, I'm glad you're here and look forward to hearing more from you!
  20. Shelley Ensz

    Something To Think About...

    Hi William, I'm TB positive, too, and I was on Isoniazid for a year (decades ago). Its my understanding that Isoniazid is known to cause things like drug-induced lupus, but usually that clears up once the medication is stopped. You can do web searches on that. Most of us do grapple with trying to understand what may have caused our illness or illnesses. But it's difficult with scleroderma since there are so many potential causes, and most of us have had exposure to more than one possible cause. Some cases may be more clear-cut than others, such as someone with severe occupational exposure to a known cause of scleroderma, such as silica. To be properly overwhelmed by it all, see our Causes of Scleroderma section on our main website.
  21. Shelley Ensz

    Fecal Incontinence

    Hi Birdie, I'm sorry you have fecal incontinence. Unfortunately, it is a common symptom of systemic scleroderma. We have a section on it on our Bowel Involvement page, at http://www.sclero.org/scleroderma/symptoms/gi/...el-incontinence There have been very good results reported for sacral nerve stimulation, and I hope it does the trick for you!
  22. Shelley Ensz

    Informing People About Sd.

    Hi Mary, That is wonderful that you were able to be of such a help to your aunt her niece! It sounds like you really helped to get them on the right track with scleroderma. I hope she joins the forum, too. Or at least gets some more (and more current!) information to work with.
  23. Shelley Ensz

    I'm New

    Hi Milica, Welcome to Sclero Forums! We're delighted to have you join us, and look forward to hearing more from you.
  24. Shelley Ensz

    Anyone With Interstitial Cystitis

    Hi Bunky, I also have interstitial cystitis for over 30 years, underdiagnosed and misdiagnosed for the first few decades. But, I have Multiple Autoimmune Syndrome (MAS) and not "only" scleroderma. I tried many meds and diets that were of very little help. I've had bladder distention surgery with biopsy and fulgeration of widespread petechial hemorrhages and a Hunner's ulcer. That put me out of my misery for about a year. Then I began DMSO instillations, which have been terrific for me, although after my recent cystoscopy, they say I need to have another distention surgery since the widespread inflammation and shrinkage has set in again. We have a page on our main site about Interstitial Cystitis and its relation to other autoimmune diseases, too, along with a patient story collection that you may find interesting. Beware that many doctors and even rheumatologists may have no idea what Interstitial Cystitis is, and may think that it is simply "regular" cystitis...even otherwise very astute doctors may know very little of rare bladder diseases, which is often what prevents or delays diagnosis of this exceedingly painful inflammatory bladder disease for many years.
  25. Shelley Ensz

    Payment For Clinical Trials

    Hi Denelle, That's a good question. It's my impression that the patient is usually responsible for paying for the more expensive clinical trials like this, and that occasionally the patient's insurance will cover it. You can inquire directly with the study coordinator: Scleroderma: Cyclophosphamide or Transplantation? If you have additional questions about participating in the SCOT study, please contact us at 1-866-909-SCOT or [email protected] When you find out, will you post the info here? Thanks!