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Shelley Ensz

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Everything posted by Shelley Ensz

  1. Shelley Ensz

    New To Sclero

    Hi LoriAnn, Welcome to Sclero Forums! I'm sorry it's because you have scleroderma, but it's good you have found our support community. It's normal to be upset upon first being diagnosed and learning about scleroderma. A rule of thumb is to keep an eye on it, and make sure that the period of worst tumult is over within two weeks. If it lingers and is still quite upsetting, then it's time to seek individual counseling (for development of more coping techniques, or for treatment of co-existing anxiety or depression). By no means is diffuse scleroderma a pleasant idea, but none of the symptoms you've mentioned so far sound life-threatening. Even diffuse scleroderma can be nonfatal and of a more lingering nature. And rheumatologists aren't the be all and the end all for care, either. Comfort yourself with the idea that your primary care doctor (preferably a good internist) can diagnose, and treat, nearly any complication of the illness. Particularly make sure you've had baseline screening for your lungs, and report any new symptoms to your PC for evaluation. Never sit on new symptoms, or even your worries, until the next rheumatologist appointment! For many people, rheum. appointments are very few and far between (because there is a decided lack of rheumatologists in the U.S.) I'm sure others will pitch in with ideas for how to ratchet down the stress level during this time. You can relax a little now, things will be better, because you've found a good resource for information and support!
  2. Shelley Ensz

    Tattoos And Skin Involvement

    Hi Barefut, I have had several ingrown toenails removed, but they kept coming back. So I finally had one removed and frozen (killed) at the root. It was supposed to take 2 weeks or so to heal. Mine has been healing without any further infection, but it has been over five months and the pinkness still hasn't entirely subsided (but it is not painful or oozing, just a tad inflamed). It seemed to me safer to have the permanent procedure than to keep on having the ingrown toenail removed, as the whole nail grows back (in) again about every 8 months. And with me, they'd always get infected, too; and infection is a risk itself. Discuss your concerns with your doctor, but consider the risks of NOT having it done, as well. I'd say, if it returns two to three times in the same side of the same toe (usually its a big toe, they are naturally more prone to it), then perhaps its time to cut your losses and get the permanent procedure done. And for the sake of going barefoot, try to get the procedure done in the fall, so it has a lot of time to heal before summer. But it doesn't really look gross or anything, beyond the first few weeks. Possibly just a little inflamed; but it shouldn't be oozing gunk or anything; if it does, that would be an infection that needs treatment, pronto.
  3. Shelley Ensz

    Tattoos And Skin Involvement

    Please keep in mind that I have no medical training at all and verify everything I say with a reliable medical source. As I understand it, tattoos are not advised for people with scleroderma for several reasons, including the risk of infections, excess scarring, and possible MRI complications. Here are some related links: Tattoos and Permanent Makeup by the FDA http://vm.cfsan.fda.gov/~dms/cos-204.html Body Piercings and Tattoos: More than skin deep by the Mayo Clinic http://www.mayoclinic.com/invoke.cfm?id=MC00020&si=1260 Generally speaking, they recommend people with scleroderma should avoid any elective or cosmetic procedures due to the possibility of excess scarring and strain on the immune system. My son, who has many tattoos, says that people with autoimmune disease should never get tattoos because of the effect on the immune system, but offhand I haven't found scientific studies to that effect on a quick search. If you get a tattoo you can't donate blood for a year; however, you also can't donate blood if you have scleroderma, so it seems to me that issue would not be a concern. See: http://www.redcross.org/services/biomed/0,...,0_557_,00.html As an alternative, you might want to consider removable body painting. That way, you could enjoy a variety of designs for different occasions yet not put yourself at risk medically. You can even make your own body paint, using recipes available online (search "Face and Body Paint"). You can even add glitter for a special sparkle effect. Of course, "food coloring" is another whole topic, but in short, you would always want to be using safe ingredients on your skin. But, I have saved the best for last! Have you considered do-it-yourself temporary tattoos, that you can make on your own printer? The fun thing about that is you do not need to be an artist, you can use the same image over and over without having to repaint it, it is a lot cheaper than a "real" tattoo and if you get tired of it, you don't need to go through painful or expensive removal procedures. Search online for "tattoo paper".
  4. Shelley Ensz

    The Other Woman

    What a thrill, Barefut! I am so glad you will be able to meet her, at long last. Please give her an extra warm hug, just from me!
  5. 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.
  6. Shelley Ensz

    Scleroderma Registry & DNA Repository

    That's terrific, Jennifer!
  7. 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.)
  8. 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.
  9. 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!
  10. 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]
  11. 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!!!
  12. 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.
  13. 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!
  14. 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!
  15. 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.
  16. Shelley Ensz

    Question About The Voices Books

    Thank you, Patty. Your book and cat toys are in the mail. ;)
  17. 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.
  18. 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
  19. 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.
  20. 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.
  21. 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".
  22. Hi Sam, I'm very sorry to hear that. My thoughts are with you and all those who cared for her.
  23. 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!
  24. 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.
  25. 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!