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Shelley Ensz

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Everything posted by Shelley Ensz

  1. New Page: Diagnosis of Scleroderma

    Thank you, Jo, for noticing we didn't even have that vital main directory page, and for making one for us. You rock! :emoticons-yes: :emoticons-line-dance:
  2. Finger Ulcers

    Hi Ron, I'm sorry that you have additional health concerns about cancer. As it happens, crackling in the lungs is very common with scleroderma lung involvement (pulmonary fibrosis) and even pneumonia. When it comes to noises, it is my understanding that crackles is more likely to be pulmonary fibrosis, and wheezing is more likely to be caused by hayfever, asthma, COPD (etc) and at worst (and less commonly) lung cancer. That said, you are correct, there is an increased risk of cancer in systemic scleroderma; and family history is always concerning. Please keep us posted on your results.
  3. Positive anti-body, lacking SSc symptoms

    Hi Esme, Welcome to Sclero Forums! I'm sorry you have health concerns right now and send my best wishes to you. Sometimes antibodies are helpful and sometimes they are only temporary or a lab error. Therefore for autoimmune-type diseases, it is usually most helpful to focus just on significant, visible or measurable symptoms. Maybe the antibodies will help explain the muscle issues you are having, and maybe they won't. Your rheumatologist will need to balance your entire medical history and current symptoms against the bloodwork. Often when tests are repeated the abnormal results simply evaporate so try not to get your hopes up that they will provide a solid answer of some sort for you. Please bear in mind that I'm not a doctor and I have no medical training at all, and verify everything I say with a reliable medical source. I know its very hard to discern from online research what constitutes scleroderma skin involvement, and what doesn't so most of us have only a hazy or murky idea of what to be looking for. As it happens, rough spots or calluses on the feet are not a symptom of scleroderma skin involvement. Systemic scleroderma doesn't occur in just little patches, and it doesn't cause rough skin either. It is typically colorless and affects areas (rather than patches). Such as, it might begin as the fingers or toes swelling up and looking like sausages; this phase can last weeks, months or years. Then the swelling might go down and the skin hardens, becoming entirely hard, tethered to the underlying tissues, and unpinchable. It actually becomes smoother, usually hairless, the wrinkles lessen and may even disappear. You are correct in that Raynaud's causes color changes, and having cold feet is not the same as having Raynaud's; poor circulation is far more common and nothing to worry about from a purely scleroderma perspective, although of course, you do want to keep warm, regardless. So, if I were you, those two items I'd take off my radar, at least for this week. Although all of us do it from time to time, we really don't need to go looking for trouble on the net, as one thing about trouble is it will always find us when it is ready! The internet is both good and bad in that it can clue us in, even save our lives if used properly, and it can also freak us out unnecessarily. Unfortunately it is almost totally impossible to draw the line in the right spot without our own specialist medical degree. And much of it is due to hazy things we read, such as "tight skin" and "cold feet", which I know isn't the least bit helpful in the real world when we have health issues and worrisome antibodies to boot! But if I were you, I'd leave the muscle stuff and capillaries on the table. The capillaries are nice and visible and provable! Your muscles were obviously the problem in the first place. And either there is a nefarious cause for them of some sort, in which case the antibody might be helpful, or there isn't. It's possible to have scleroderma, and many other illnesses, without getting the whole nine yards of symptoms, especially at first. The flip side is its also possible to have even many things wrong that are not caused by a worsening or systemic illness. You and your doctors have your work cut out, figuring where you fall on the spectrum of health to illness. Please let us know how things go at your appointment next week. :emoticons-group-hug:
  4. Specialist in Morphea

    Hi Debbie, I am really glad you joined us. I was just thinking, treatments can certainly help your morphea and probably even stop it from spreading, too. But I am hoping at the same time that you already have, or are developing, a plan to cope with the emotional fall out over it. It's entirely normal for us to isolate ourselves and become depressed over any illness, and all the more likely when the illness affects our looks or our activities. However, just because it happens, and its a natural course, doesn't mean it has to stay that way! It's possible and even necessary to have morphea -- even on your face -- and still be happy and with a fulfilling and broad social circle. Many people even with the harshest form of en coup de sabre -- and other figure-altering conditions, such as survivors of fire or amputations -- have established great careers, married, had children, etc. The thing is, it's neither easy nor natural to do so. It typically involves counseling, medications, lifestyle changes, support networks, and the simple sheer daring to believe that what we want is possible. You've made the perfect first step by joining Sclero Forums, and starting to seek out an expert and some appropriate medical care. I'd like to suggest that you don't stop there! You are entitled to a happy, exciting, and fulfilling life, chock full of all the happiness your heart can contain. You can be an inspiring example to others with morphea, and a living embodiment of "when life hands you lemons, make lemonade!" If you aren't yet fully addressing the issues of isolation and depression (or anyone who is reading this is in a similar bind), then I encourage you to set an appointment with your primary care doctor, right away, to get an evaluation, referral, or care plan. There's not just a light at the end of the tunnel for you -- there is also fun, laughter, friendship, love, and adventure! The world and its many joys are not made only for the Perfect People. In fact, I daresay, us imperfect ones often find much more true joy and satisfaction in life, probably because it doesn't just fall in our laps. We have to really dig for it, which makes it all the more precious, and all the more real. And we'll happily be here for you, all along the way, as you now begin healing your skin, and your heart, and your life. No more regrets. You're in a safe place now, and we'll all just move forward from here, okay? :emoticons-group-hug:
  5. Confused on diagnosis

    Hi Andee, How are you holding up while waiting? I know it's impossible to follow advice such as "don't even think of scleroderma for the next few weeks" as then it's all we can think about. However this would be a great time to try to focus your thoughts on nearly anything else, as much as possible. Such as devote yourself to an existing hobby or find a new one and see how much you can learn about it in the next few weeks. I'm aware that doesn't work 24 hours a day, but the fine art of distraction is a powerful force for helping us cope with uncertainty and change. I try to put one "happy" thing on my calendar every single day, and then when my mind goes looking for trouble, I try to gently steer it towards all the fun that I have to look forward to. It doesn't have to be much, or even very fancy; they key for me is just defining it and putting it on the calendar. It can be as simple as "take a photo of a flower on Friday"...something, anything that is positive. I know this tip might sound very lame, and it may not be useful for you at all, but it might strike a chord with someone else reading this who is stuck in circumstances similar to yours, and it might be the idea they need to be able to cope better while they are waiting for answers. The thing is, with scleroderma and many other chronic illnesses, the sheer mind-numbing waiting is a chronic condition itself. It never goes away! We are always waiting for the next appointment, the next test, the next batch of results, the next symptom; and while focusing on all those nexts, we can so very quickly and easily lose sight of our life, and our enjoyment of it, today. It's very possible, and even very necessary, to continue to enjoy life -- and even increase our enjoyment of it -- even when our health is threatened or declining. But it does not come naturally! It requires awareness of the threat to our sanguinity and determination to carry our heavy load as though it is light as a feather; taking it seriously but not letting ourselves become serious, all at the same time. Well now, where did I get off on this tangent? I just want to let you know, we all know how very challenging it is to even vaguely wonder about having scleroderma. And most of us would say the very worst time of all for us was when we were left up in the air, just wondering, especially if we had not yet thoroughly developed our stress coping skills! :emoticons-group-hug:
  6. Specialist in Morphea

    Hi Debbie, Welcome to Sclero Forums! I'm sorry you have Morphea. The good news is that morphea is perhaps the most treatable form of scleroderma. As I'm sure you know (but just for newbies with morphea who stumble across this thread), many people with morphea just have one or two rather inconspicuous patches, that don't worsen or spread significantly, and that it often fades on its own within three to five years, even without any treatment. However, then there are people who have more significant involvement. Perhaps it is just a patch or two, but in very visible places, just as the face. In children, patches sometimes occur over a joint and if the patch goes deep, it can even impair the growth of a limb. Therefore, treatments for morphea range from nothing at all, particularly for those with the small few and well obscured sort of patches, to moderate treatment to slow down expanding or visible patches, and then more aggressive treatments such as for children with a patch threatening to impair a limb. All treatments for morphea are best when used to avert further damage, so the earlier a scleroderma expert is sought out, the better. Today, for most types of morphea, UVA1 Phototherapy is generally considered to be the first line treatment. This is very much like a sun tanning booth. Treatments are just a few seconds (really) and are done several times a week for a few months. It's entirely painless plus it's done to the whole body so you get a delightful suntan as a pleasant side effect. The thing is, it is often quite a chore to find the (few) dermatology offices that have UVA1 booths. But, when you do find them, often their dermatologists have some experience with treating morphea. Keep in mind if/when you are calling places about this that UVB treatments are not the same as UVA1, and really try to find the UVA1 facilities. Since you have facial involvement, you really want to consult closely about that. Sometimes the UVA1 can darken the spots. If your face one is stable (not currently expanding) then you may want to use a face shield for your treatments. Read more about your treatment options at Morphea Treatments, and please let us know how things go for you as you are tracking down an expert or phototherapy place, etc. We hope to hear lots more from you! :emoticons-group-hug:
  7. Mammograms and PAPs

    Hi Miocean, That's a really good question regarding abnormal mammograms and PAPs. As it happens, about 40% of mammograms show up with some sort of abnormal result, and due to this I figure at least 4 out of 10 of my mammograms will have some sort of issue. I am seldom disappointed by this expectation, as fibrocystic changes often drives them around the bend, and I am always having to reassure my new primary care doctor that such-and-such on a manual exam is perfectly normal for me and nothing to panic about. Since, as Jo so aptly pointed out, there is an increased risk of cancer with systemic sclerosis, we can't take anything for granted, even though we also need to take everything with a grain of salt in order to keep our heads on straight, as we have to deal with so many more tests -- and test results -- than the average person. I do wish I had a dollar for every woman I encountered in the imaging waiting areas, who were panic stricken and often in tears over needing to have their mammogram retaken or who needed further testing. It seems the clinics I've been to don't bother to explain that is a NORMAL part of the process and that very few abnormalities are truly abnormal and cancerous, in the end. Us folks with chronic illness are used to the drill, and accustomed to all sorts of false alarms, so we tend to develop a lot more coping skills. But my goodness, even the slightest issue can, understandably, throw a perfectly healthy person having a routine exam into a total tailspin. So yes, most of us should have experienced some abnormal test results, and then on top of that, there would be more abnormal test results that are eventually determined to be more significant, among scleroderma patients, although this would also remain as just a small sliver of those who flunked the initial screenings. :emoticons-group-hug:
  8. Total Hip Replacement Surgery (THR).

    Hi Jo, One thing you didn't mention was that as soon as you got out of the recovery room, the first thing you did was to let me know you had online access and could get into the Forums! I also see you didn't mention that you prepared all the April news ahead of time so that even the newsroom wouldn't suffer in your absence. I'm delighted that your surgery went so well, and especially glad that you were right on top of the cellulitis so that it didn't get out of hand. It is fabulous to have you "back" in the forums, although I think the only time you were really gone was the few hours that they had you thoroughly knocked out with anesthesia. I think if you had only had the spinal, as planned, you might have live blogged the whole event, as I had jokingly requested. :blink: Here are some Get Well flowers for you.
  9. Confused on diagnosis

    Hi Andee, Welcome to Sclero Forums! I need to leave for an appointment now, but wanted to at least say hello to you before I left. Many others will chime in with their experience. Basically scleroderma is a very difficult disease to diagnose; it often takes an average of six years from onset to diagnosis. It is hardly ever diagnosed right away, except in really super severe and extremely obvious cases -- and even then we've heard of long delays. Try to work on accepting the idea right now that you might just have Raynaud's and some antibodies. At least, that's what you have right now, right? You are obviously also at risk for developing more symptoms down the road, either that or perhaps some general autoimmunity runs in your family in which case strange antibodies can appear and even one or two symptoms of connective tissue diseases, without anything full blown ever occurring. Try to focus on being flexible and resilient right now, as you will definitely need those skills, even if all future testing always shows that you are never any sicker. You'll still need resilience just to cope with the possible fright of it, won't you? You can do it, you can adjust to this, and we'll be here for you.
  10. New medicine for Scleroderma? (Resunab)

    Hi NorthStarHope, It's always great to hear from you. Thanks for the tip on Resunab, as you see we've now included info on its phase 2 clinical trial in our Scleroderma Treatments and Clinical Trials section. Thankfully there is extensive research ongoing for scleroderma now, with many treatment advances in recent years. When I first started in this field, even a single clinical trial was huge news, now there are so many that it is hard to keep track of them all! I'm sending big hugs for you, and for your sister. She is very blessed to have your care, understanding, and abiding support. As you know, often one of the hardest things for people with scleroderma to deal with is the lack of concern or comprehension on the part of family members and friends. It's often like a "Say what?" followed by total tune-out, at a time when people most need their understanding and support. :emoticons-group-hug:
  11. Finger Ulcers

    Hi Ronald, Welcome to Sclero Forums! You have obviously survived systemic scleroderma for a good 30 years now. I hope you stick around our forums for many more years as a fine example of good coping and longevity with diffuse scleroderma. If the ulcers are infected, then oral antibiotics might be necessary. Keep an eye out for redness around the wound. Fever and/or red streaks going up from it signal an urgent situation (of course). Many things can affect wound healing time, including how we care for the wound, age, stress, other illnesses (such as diabetes) and nutrition. I'd recommend that you at least see your primary care doctor to discuss wound care, and your options for a new rheumatologist (hopefully, a listed scleroderma expert). With prolonged scleroderma ulcers, the rule of thumb is, "If it's not healing, it's getting worse!" If it is fairly stable, at two weeks, I wouldn't be quite as concerned as I would at two months. I had a small toe ulcer that took over a year to heal, that had no infection and no complications. Finger ulcers are the hardest as it is very hard to remember to protect the wound at all times and from all the elements, and to not bump or irritate it. Sometimes underlying problems need to be addressed for healing (such as optimizing circulation, or diabetic care.) See our section on Digital Ulcers for more info.
  12. Hi LCT2007, Thank you for the update! I'm really glad you are in touch with a juvenile scleroderma expert now. It is good for everyone to be tested for Vitamin D and especially those with any symptoms of autoimmune diseases. See our section on Causes of Scleroderma: Vitamin D Deficiency. There are free mobile phone apps that track Vitamin D exposure. The effect of sun exposure can vary due to time of day, time of year and geography. The apps are so precise, they even consider how much of the body is exposed, and can literally sound a beep to let you know it is time to turn over (if you are sunbathing). It was enlightening to me, as I wasn't getting even 1/20th of the exposure I thought I was; and this gives a measurable way to balance things out with supplements, as well. You might not want to micromanage daily exposure, but using the programs to get a general idea, such as encouraging wearing less clothing (on warmer days) and playing outside (and not in the shade) during peek hours in your location -- and joining her to get yours too, if possible -- might be a really fun way to deal with D, and to make some lemonade, out of all the lemons. :emoticons-group-hug:
  13. Is this scleroderma? Unsure

    Hi Vfazfont, Welcome to Sclero Forums. I'm sorry you have concerns about autoimmune disease and send my best wishes to you. Please keep in mind, of course, that I have no medical training at all and verify everything I say with a reliable medical source. I think you could begin by consulting your primary care doctor about your concerns. To me, most of them sound like they might be entirely in line with ulcerative colitis and anxiety. I know it must be extremely hard to draw the line between the symptoms of anxiety and other illnesses, especially since anxiety can make one worry so much about other illnesses, so it is quite a catch-22, isn't it? I'd approach it by first just trying to figure out whether or not you have Raynaud's. It's really rather simple. Do your hands or feet turn white or blue in response to cold or stress? If so, then you may want to have further testing. With vascular lab testing, they do very precise tests to measure the exact temperature of every finger after generalized cooling and heating. Some doctors skip the fancy testing for starters and just dunk your hands in a bucket of ice water to see if they turn the right sort of colors, quickly enough. What I like about Raynaud's is that it is measurable and visible. You can't fake attacks, or their severity, and the colors neatly display for the whole world to see! Because of that, if you are doubtful you have Raynaud's, it is quite possible that you might just have poor circulation which can often be improved by drinking more water, eating better or more regular meals, and appropriate exercise, etc. I hazard to say that most of us with Raynaud's would say that attacks are absolutely unmistakable. The color changes are quite startling and we move into action to warm them up as soon as possible. Therefore, it may be a very good thing that you are not sure you have Raynaud's. If you have poor circulation, though, then you will still want to do things to both improve your circulation and to avoid developing Raynaud's. See Raynaud's Prevention which includes a video presentation by Amanda Thorpe. I'd use Raynaud's as the cutting edge to see whether or not other things matter. Some problems swallowing and breathing go along with anxiety, and so on and so forth. Its the range from slight to severe and constant where in the middle the line is usually drawn between anxiety, and symptoms worth pursuing. So pay special attention to doing everything possible to keep anxiety under control. If the anxiety is just fine, you are feeling calm, happy and providing excellent self-care, and then you notice singular prominent symptoms when the anxiety is at bay, then you can more confidently zero in on them. I'm sure worrying about scleroderma is not going to help anxiety at all. Therefore, let's back off the idea of scleroderma for a minute, okay? The first step is make sure your anxiety and ulcerative colitis are being managed excellently. Then, consider the question of Raynaud's. You can have Raynaud's all by itself, even. If you do have it, then get it properly diagnosed and deal with it. I don't think going to the doctor with a laundry list of things that they feel are already accounted for is going to get you anywhere, especially since they can account for the vast majority of them with things you have already been diagnosed with, so they very likely to chalk it all up to anxiety. So my reasoning is that focusing on just a single item, at this point, would be more effective in moving your medical care forward IF it needs to be moved forward. (That, I simply don't know!) So, if it were me, I'd start with Raynaud's. It's not a "soft" symptom. It's provable. It's a great starting point...or perhaps even a great way to put the idea to rest, depending on how things go. In any regard, we're here for you as you go through the sorting out process, and as you see, we offer a whole range of ideas in how you might want to approach things! :emoticons-group-hug:
  14. Hi LCT2007, Well, what an interesting and perplexing appointment that was. It is hard for me to get my head around all of it, and I really cannot imagine how it must be for you. The doctor obviously had some tough news to deliver, and they must be very concerned for your daughter's health. I am glad that they are going to do all the baseline testing and keep a close eye on her, as she certainly is "at risk" of developing systemic juvenile scleroderma. Please keep in mind that I am not a doctor and have no medical training at all! However, in my view, being at risk or even at very high risk is not the same as having it right now or absolutely inevitably developing it. What it does mean is that this is serious enough to warrant you following through on all the recommended tests for her -- to do otherwise would be an egregious mistake under the circumstances. But at the same time, try to keep your head on your shoulders to the absolute max. Pull out all the stops to keep your attitude upbeat, but without going into denial or relentlessly pursuing unproven or disproven "cures" for scleroderma. We research breakthroughs on a daily basis so you will be the first to know of anything that is proven to be of benefit for your daughter, and I might warn there are *many* charlatans with bad info on the internet who do not have your daughter's best interests at heart. Please keep pursuing a listed juvenile scleroderma expert for your daughter. Yes, they are few and far between, and hard to reach, but worth it in the end. Unfortunately, stress worsens scleroderma and its symptoms, and, particularly Raynaud's. Your cheerful and flexible attitude, taking things seriously but not *being* serious, will do wonders for helping your daughter make a successful emotional adjustment. Let's face it, we can all adjust physically, somehow, to any illness or injury. It's the emotions of it that are the hurdle for most of us, and even more so with the complication of needing to set an example for your daughter. You can do it. We will be here for you. Reducing sources of inflammation, like gluten, might have a small impact, or it might not. Researchers are not entirely sure of the connection between gluten and scleroderma yet. But, going off the rails with strict diet protocols could be *very* stressful for your daughter, and that could worsen her health even more! So this is time to take a really deep breath, and then another one. This is not an emergency. Its something important to follow through on, with tests and garnering information. It's a very long term process that you are embarking on, to see whether or not she EVER develops connective tissue disease. EVER is a very, very long time, and much of that time might be spent with her in pretty good health, considering. Well, I'm running out of consoling words. But you get the idea, don't you? We care, and we are here for you, and as you learn more, it will actually get better and easier to cope with. Promise. :emoticons-group-hug:
  15. False positive?

    Hi Dani, Welcome to Sclero Forums! I'm sorry you are sick and have questions regarding diagnosis. As the others have mentioned, autoimmune diseases and scleroderma in particular can be very hard to diagnose. Typically people are followed by rheumatologists for many years before the diagnosis is nailed down. So my question is, did the rheumatologist ask to see you again, or are they still in the process of running tests (for this round)? When there appears to be something autoimmune going on, but it is uncertain or in the initial stages, they often recommend follow-up in perhaps six months or a year. They assume of course that you will see your primary care doctor if you develop any new or worsening symptoms in the meantime. Yes, there can be false positive tests. But educate yourself on the most telling symptoms of various autoimmune diseases, so that you can get a second opinion from an appropriate expert, if you have sound reason to believe your local doctors are missing the boat, which unfortunately is all too common with rare diseases (like scleroderma). :emoticons-group-hug:
  16. Positive ANA and possible symptoms?

    Hi Marchr, Welcome to Sclero Forums. I'm sorry you have concerns about your mother having possible scleroderma. I need to run right now so I can't answer all your questions, but many here will pitch in to try to help. My thoughts are with you and your mom. :emoticons-group-hug:
  17. Neck surgery, then high fever

    Hi Quiltfairy, I'm glad you have your neck surgery over with. I'm sure they'll figure out the fever soon and get you on the road to improved health. :sickly: I'm thinking of you, and sending all sorts of good thoughts your way. Here are some Get Well flowers for you.
  18. Hi LCT2007, Welcome to Sclero Forums. I'm very sorry you have concerns about your daughter's health. I understand your concerns. It's probably impossible to actually "not worry" since right now, you know just enough to cause a lot of worry but nothing to thwart or refocus it. Your job, as I see it, is to do everything possible to calm yourself until you get some facts from the rheumatologist on Wednesday. I would *strongly* recommend reading a few of our comforting replies and then entirely unplugging from the internet and all health-related thoughts until then. If you have any hobbies, throw yourself into them right now, or clean the house from stem to stern. In other words, find a positive outlet for the nervous energy, if you possibly can, because maintaining YOUR positive attitude is key to helping your daughter not over-react or experience more stress about this. One very comforting thing I can tell you, and many others will chime in on this, is that Raynaud's is very common in the general population, and particularly in young, thin girls. It's possible your daughter might be having something that is causing the attacks or worsening them, such as stress or cold or pop or tea or even some candies (any sort of caffeine.) Antibodies are a catch-22. Sometimes they mean a lot and sometimes they mean next to nothing. The symptoms, and especially the clustering of symptoms, means far more. She might have antibodies just because some general autoimmunity runs in your family, in which case its entirely normal for other family members to have some antibodies and even some symptoms of autoimmune diseases without ever getting the whole disease. Also, lab errors are very common! Likely her doctor will want to repeat the tests with another lab, either now or later on. That said, the results so far are important enough for you to be sure to keep her medical appointments. But try to think, it is *all* good, that it will be *very happy* to either find out it is a lot of fuss about next-to-nothing, and that if it is the harbinger of something-or-other, that you have caught it *very* early on so your daughter will have truly outstanding care and thus an awful lot less to worry about. Also, all sorts of antibodies can occur with "just" Raynaud's. Likely it will be a very long time, perhaps even years, before you know for sure if your daughter has, or doesn't have, any larger underlying illness. Therefore now is the perfect time to develop an attitude! The attitude is that you are a very flexible parent, and a wonderful cheerleader for your daughter. Your positive attitude can show her how to deal with *anything* in life with joy and happiness and confidence. You can do this. I know you can. We're on your team. We understand the challenge it is to just keep your chin up a few more days until you know more facts. You can adjust to any fact. We all know that. It is the uncertainty that drives most of us right up the tree, if we let it. We totally get that, and some of us have terrific hobbies and very clean homes to show for it, too. :emoticons-group-hug:
  19. Stopping plaquenil

    Hi Judy, Thanks for asking us to clear up the confusion for you, if we can. Yes, the thread is about taking oral plaquenil. But Margaret was thinking about having Gareth stop plaquenil for a number of reasons, one of them being she thought maybe it was making his veins worse when getting his IVIg treatments. IVIg is a treatment in and of itself, that is always administered by IV. However I think we went around all around the bend and decided the difficult with Gareth's veins was probably not caused by plaquenil. But of course we're not doctors, and all that, so she should ask his doctor(s) about it all, as well. Anyway, that's how the issues became intertwined, and you got lost in the maze of logic. I hope this un-fuzzes you, but if not, I'm sure someone else can take a whack at it. :emoticons-group-hug:
  20. I'm happy today because....

    Oh my goodness. It's hard to believe that it's been five years already, Miocean! What a delightful thing to rejoice in. Nothing can make me much happier than to join in the Sclero Happy Dance!! :emoticons-line-dance: Happy Anniversary Miocean! :emoticons-line-dance: :emoticons-group-hug:
  21. Hi Automartin, Welcome to Sclero Forums! I really can't add anything to what Jo and Amanda have given you, but I did want to just swing by to say hello, and welcome. :emoticons-group-hug:
  22. New Pulmonologist

    Hi Miocean, I don't know how I missed this thread earlier. I'm sorry your lung testing went poorly. It really may have been an equipment issue, especially since you know what oxygen is supposed to feel like, and your sats ran so low even when it was pumped up. I'm hoping your next round of tests goes better! :emoticons-group-hug:
  23. Stopping plaquenil

    Hi Margaret, That's an excellent question you ask regarding plaquenil. As it happens, plaquenil is not an immune suppressant, and it does not make people more susceptible to infections. Rather, it is a disease-modifying drug. In addition to ameliorating some connective tissue disease symptoms, it has actually been shown to increase longevity in lupus patients! Best I can tell, plaquenil does not affect the veins, except perhaps in a positive way as it reduces the incidence of blood clots in people with antiphopholipid antibodies, and can be helpful in treating vasculitis. See Anti-Malarial Drugs by Johns Hopkins. I was on plaquenil for years, but had to go off it as eventually it worsened my psoriasis. I had a very hard time going off plaquenil, because I got a lot sicker each time. You're supposed to be able to just stop it; its not like its addicting. But I simply could not, so I ended up very gradually tapering, and then increasing again when I encountered problems, and gently decreasing again, and then getting other meds to handle the gap it left. Overall it took me six months to transition off it, and to this day, I still wish I had been able to stay on it. It is pretty amazing for being so cheap! Difficulty with veins is often caused by inadequate hydration. It can help a lot to start drinking more fluids the day before any treatment or blood draw, and to limit dehydrating fluids or medications, such as caffeine (which is in nearly all sodas), to have a little bit more salt (or not restrict it quite as much the day before), and to cut back a bit on any diuretics (like lasix) on the day of the procedure (with doctor's permission, of course). Our blood is made primarily of water, and when we are even temporarily low on fluids, we literally have less blood, making our veins shrink and become even less accessible than usual. I find it helpful to do all of these things, and if it still looks like it may be difficult, to have a heating pad on the area for about five minutes beforehand. See Six Tips for Good Blood Tests. Also, my personal experience is that there can be a huge difference among techs! Some of them just have the knack for difficult draws, and when I find a gem in any particular office, I get their name and try to request them the next time. The desk will tell you it doesn't matter, that they are all the same -- but in my opinion, that is absolutely not true. I do believe in the existence of Vein Whisperers, having been magically blessed with them occasionally. So part of the problem might be the tech, because some of them are lots better than others when it comes to doing veins that are not the customary, easy draw. :emoticons-group-hug:
  24. Sore swollen middle fingertip

    Hi Charliehorse, Thank you for updating us on your finger. I'm glad its getting better. Did you know they have products called fingertip protectors? They are often used by guitarists, and for repetitive office work. You might find it handy to use one part of the day, especially when you're going to be typing, and once it has healed, keep on using them intermittently. The protectors make the finger more usable than when it is entirely wrapped. There are also cloth fingertip protectors, and even fancy ones with gel. I had to wear finger splints for a long time (due to arthritis), and fingertip protectors prevent and soothe irritation from the splints. Anyway, I'm very glad its better and that it wasn't anything super serious, too.
  25. US disability form question

    Hi Sandcat, Welcome to Sclero Forums! I'm sorry you have scleroderma and need to apply for disability. Generally speaking, the answer to this question would be "Yes." See Systemic Sclerosis Prognosis and Mortality. And if you have severe systemic sclerosis, your case will be fast tracked by Social Security. See Disability and Scleroderma by NOLO. That said, many of our members initially received disability based on other diagnoses, such as fibromyalgia, often because of the extreme lag between onset of scleroderma symptoms and diagnosis. If you are doubting your doctor has you properly categorized, based on information on our site, then you are probably right. You might want to make sure that they are a listed scleroderma expert, and/or seek a second opinion. Most usual rheumatologists have extremely limited experience with scleroderma and thus commonly get the diagnosis or treatment wrong. So to optimize your care and longevity, you want to make sure you have a scleroderma expert on your medical team. If you have to travel to see one, they are typically outstanding at working with your local rheumatologist or doctors to continue to monitor your care. Also see: Types of Systemic Sclerosis. :emoticons-group-hug:
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