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Shelley Ensz

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Everything posted by Shelley Ensz

  1. Shelley Ensz

    Hearing This Morning

    Good luck, Sam!!
  2. Shelley Ensz

    Frustrated With Insurance!

    Hi Erin, I'm sorry you couldn't get your infusion. It sure sounds like you have an interesting insurance company. I hope something works out so that you feel a little bit better soon.
  3. Shelley Ensz

    Head Sweating Profusely

    Hot flushes are a side effect of many medications and some supplements, so it can prove fruitful to do internet searches for side effects of your entire medication list (including supplements). And/or call your pharmacist and ask them to review your med list for hot flushes as a side effect. To the best of my knowledge (but, I'm not a doctor, and I don't have any medical training at all, so I may be wrong!) they aren't necessarily any sort of symptom of scleroderma.
  4. Shelley Ensz


    Hi Gizelle, I'm very glad to hear that your surgery went fine!
  5. Shelley Ensz

    New Treatment For Telangiactasias

    We have Dermablend makeup, and Jane Iredale (mineral makeup) listed on the main website. See Telangiectasia (Red Spots on Skin). Basically, look for the term "corrective cosmetics" when seeking coverage for telangiectasia or other inflammatory issues. Normal cosmetics are not intended to provide enough coverage, so they often need to be used very heavily, which usually doesn't look natural. If you are on a limited budget, consider springing for the foundation but use other (cheaper) products for blush, shadow, lipstick (etc.). It is the good foundation that hides 99% of the flaws.
  6. Shelley Ensz

    I'm Having Surgery

    Hi Gizelle, Good luck with your surgery! I am sure it will go well, and will be sending good thoughts your way. It sounds like something you'll be very glad to have done, once it is over with.
  7. Shelley Ensz

    Traumatic 24

    Hi Barbs, I have to confess, I started reading this thinking it was going to be another one of your ever-humorous postings. What a comeuppance I had! I'm very sorry that your mum and dad are both so ill and hospitalized. I'm curious whether you got your lively sense of humor from either or both of them? Shall we start placing bets now on which of you gets out of the hospital first? I am hoping it is you, as you have plenty enough to deal with already! And of course we will all be sending good thoughts your way, in hopes that things improve for your entire family.
  8. Shelley Ensz


    Hi Erin, I'm glad you finally got a diagnosis, although I'm sorry you have Ankylosing Spondylitis. Just a few months ago we carried an article that touched on it. With any luck, they will be figuring out how to diagnose people with it sooner. Scientists to unlock genes behind common serious illnesses. The biggest DNA analysis of whole human genomes will shed light on why some people are more at risk of developing a serious illness. They are examining 15,000 markers for genetic variations relating to another four diseases - breast cancer, autoimmune thyroid disease, multiple sclerosis, and ankylosing spondylitis. Guardian Unlimited. 04/14/07.
  9. Hi Nan, I'm thrilled that your anemia hospitalization was finally covered by insurance. Congratulations! But I'm sorry you will need treatment again. I hope the next time they have the good sense not to wrangle over the bill like that.
  10. Shelley Ensz

    Getting To Know You Thread Is Pinned...

    What a great idea, Carrie. Thank you!
  11. Shelley Ensz

    Rituximab Therapy For Scleroderma?

    Hi Mike, It's a fair enough question. At the moment, there is an FDA Health Advisory out for Rituximab, which we have posted in our main Medications: Rheumatic section. FDA has received reports of the death of two patients who were treated with Rituxan for systemic lupus erythematosus (SLE). Both patients developed a life-threatening viral infection of the brain. U.S. Food and Drug Administration 12/18/06. Part of the FDA warning says, "Rituxan is approved for use only in patients with certain types of cancer called non-Hodgkin’s lymphoma and for rheumatoid arthritis when other treatments have failed. Rituxan is not approved for the treatment of SLE."
  12. Shelley Ensz

    Getting To Know You - Archives

    Hi Timo and LoriAnn, It's a great pleasure to have both of you join Sclero Forums, and with such inspiring stories, too. I look forward to hearing more from both of you. Welcome!!
  13. Shelley Ensz

    Test Results

    Hi Celia, As I understand it, due to newer technology, they are picking up on more and more abnormalities that turn out to be nothing serious at all. I had a handful of different serious-sounding (to me) abnormalities on lung cat scan (besides my usual fibrosis), which they tracked sequentially for two years. The end result? Everything was still basically the same and nothing to worry about at the end of two years, including subpleural nodule, granulomas, and a "suspected thymic or bronchogenic cyst", pericardial fluid, fibrosis on both bases, etc. I just wish they had told me in the first place that the odds were great that all of this would be nothing at all. I hate to waste even five minutes of worry over something that turns out to be okay, and two years is a long time to have even little teensy snippets of worry, if you ask me. So, since my doctor didn't bother giving me any assurances at all, please take it from me, that it is very understandable to wonder about this, but try to relax and picture how superbly ridiculous you will feel two years from now when they finally issue a comparatively clean bill of health for your lungs. I felt like a total idiot for letting it bother me for even a second, not to mention passing doubts for two years. The old line, "Don't trouble trouble til trouble troubles you" is generally great, although the sneaky thing is that an abnormal cat scan may obviously make us think that trouble has already troubled us, whereas its mainly due to the oversensitivity of the tests today, picking up things that in prior years would have been completely overlooked. And if it really is trouble with a capital T, it will still take at least 6 months to 2 years to know that for sure. So then you would be glad you had saved up all your worry worts for Real Trouble, or perhaps even just a passing inconvenience, depending on their findings. I hope all of it turns out well. My hopes will be with you.
  14. Shelley Ensz

    Johns Hopkins Information Package

    Hi RTS, It is a series of excellent articles on scleroderma. Very easy to read and very informative, too. Thank you!
  15. Shelley Ensz

    Raising Scleroderma Awareness Now!

    Thank you for helping raise awareness, Barbara -- we all really appreciate it! And it also shows the difference each one of us can make as individuals, by simply wearing our awareness bracelets, giving out brochures (or setting them out or making them available to our doctors), and just talking it up, in general. That is definitely tackling scleroderma now...without any huge investment of either time or money.
  16. 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!
  17. 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.
  18. 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".
  19. 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!
  20. 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.
  21. Shelley Ensz

    Scleroderma Registry & DNA Repository

    That's terrific, Jennifer!
  22. 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.)
  23. 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.
  24. 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!
  25. 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]