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Shelley Ensz

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Posts posted by Shelley Ensz


  1. Hello Paulo,

     

    Welcome to Sclero Forums! 

     

    I'm sorry your father has scleroderma, and a nonhealing ulcer. Please have him call or see his doctor for further wound care instructions, if there is anything at all that seems to be impairing the healing. It is not a "do it yourself" job because the wrong approach, even if very well-meaning, can make ulcers worse, and every situation is different.

     

    It's normal to have regular doctor appointments to treat the wound, until it is entirely healed.

     

    Please let us know what you find out, and give our best wishes to your father, too.

     

    :hug-group:


  2. Hi Wonderfuldaughers,

     

    Welcome to Sclero Forums!  Obviously, you have coped quite well with scleroderma for a long time.

     

    Please keep in mind that I'm not a doctor, in fact I have no medical training at all. Even my first aid kit is out of date <sigh>.

     

    It's possible you might want to look into esophageal stretching some more, if you can swing it financially. The esophagus can get smaller and even get erosions from the acid reflux. That is likely contributing to your difficult swallowing and choking, which will only get worse and worse unless adequately treated. It's my understanding (and please correct me if I'm wrong) that stretching the esophagus only stretches the esophagus, not the opening from the stomach to the esophagus, so it won't worsen the heartburn. And, need I point it out, that it's easy to die from a single choke gone wrong?

     

    It's bothersome that your heartburn is that bad in the first place and apparently, undertreated. You might possibly be a candidate for a Nissen Fundoplication surgery, or something similar. Those surgeries are designed to quell or eliminate heartburn. In any event, if I were you, I'd see if I could get an appointment with the best esophageal doctor in my area and discuss options while things might still be treatable and manageable.

     

    Oh blah blah, I've rambled on long enough.  Really, I just wanted to welcome you, and then my fingers got carried away!  So, around here, please "take what you like, and leave the rest" as we all freely toss in our two-cents worth.

     

    :hug-group:


  3. Hi Margaret,

     

    Oh boy, you have your work cut out for you in so many ways. I suppose the first is to get Gareth to understand the importance of the drastic restrictions and how he will feel so much better following his new menu plan. And then it will be trying to find anything he can eat, and enjoy!

     

    I've had to follow various dietary restrictions before, and really the hardest part is overcoming self-pity and looking on the bright side of it. Not to mention reading food labels and learning new ways to cook!

     

    You could make a thread in our Personal Support subforum for menu and recipe ideas, if you want. Since nearly every good food on earth is eliminated with a carbohydrate intolerance diet -- including bread, potatoes, rice -- the challenge will be to find what he likes and compensate for the foods he will clearly see as "missing". Like, yikes!

     

    My only tip would be to explore cauliflower to the absolute max.  Get a ricer, so you can make "rice" out of cauliflower. Learn how to make cauliflower "mashed potatoes".  If spaghetti squash is allowed, make it by the gallons for use as spaghetti noodles.

     

    I'm guessing he will sorely miss the absence of good stuff like pop and chips and pizza and desserts!  So look for things that have similar tastes or crunchiness to replace them. He won't be able to have a donut, but he could enjoy banana slices with peanut butter.  Frozen bananas can make a tasty imitation ice cream. To replace sodas, try every flavor of teas imaginable until he finds a few favorites. Some are, thankfully, just naturally sweet-tasting.

     

    Remember the power of presentation and garnishes. Make his plates "special"; have him pick out funny or colorful dinnerware and glasses. Pretty umbrellas in drinks, fancy straws, radish roses, music he loves at dinner time...pull out all the stops to boost the surrounding level of pleasantness will help associate the changes with "fun".  It is an adventure in finding new things to enjoy, possibly exploring foods he's never even tried before!

     

    Just don't underestimate the amount of time and energy it will take to make a transition. Look for like-minded support groups. 

     

    On the positive side, the diagnosis is important and proper management will stop his weight loss and improve his health.

     

    Hugs for Gareth! :hug-bear: :hug-bear: :hug-bear:

     

    :hug-group:


  4. Hi All,

     

    We seldom celebrate number of posts or number of years membership around here.  But Margaret has reached a special milestone recently, with over 1,000 posts and 10 years of solid Sclero Forums membership.

     

    She's been a steady support to hundreds, now thousands, of forums members over the years, in addition to being a well-informed caregiver for her son Gareth.

     

    So, I thought it would be fun to declare this International Margaret Day. Join me in kicking up your heels and having fun with the "Smiley" function in our forums.

     

    Many congrats, Margaret! 

     

    :happy-dance-line::hug-bear::happy-dance-birds::happy-dance-line::you-rock:


  5. Hi Bek,

     

    Welcome to Sclero Forums.  Please keep in mind that I'm not a doctor, and have no medical training at all.

     

    Since your symptoms of dryness sound prominent, it happens that they might be more in line with Sjogren's syndrome than scleroderma.  Are you aware that anti-centromere antibodies often occur in Primary Sjogren's?  See the PubMed article, Clinical significance and diagnostic usefulness of anti-centromere antibody in Sjogren's syndrome.

     

    Sjogren's is treatable so it really doesn't need to be ignored or "not worried" about.

     

    I'd recommend that you somehow get a referral to a rheumatologist, preferably one who has an interest in Sjogren's. If your insurance requires referrals from a primary care doctor, if I were you, I'd try to get a new primary care doctor.  It would seem to me that being referred to a rheumatologist for evaluation would be the proper way to reduce worry, particularly when symptoms and blood work align and point to a possible rheumatic disease.

     

    :hug-group:

     


  6. Hi Emjbush,

     

    Welcome to Sclero Forums!  I'm sorry your dad has scleroderma and am happy that you are trying to help however you can.

     

    In our own special way, we've already done as you've requested.  We've published the Voices of Scleroderma book series, which feature over 100 unique patient and caregiver stories in every volume -- from all around the world. Each book also includes articles by world experts in scleroderma and pulmonary hypertension.

     

    The stories are uplifting, sad, and everything in between. They are also sorted by type of scleroderma, so people can zoom in on their type, if they wish, to find people with stories perhaps similar to theirs.

     

    But the overwhelming thing we have found in sorting through over 1,000 stories on our main site, is that the illness is like a snowflake. No two cases are ever the same. Yet the human spirit shines through it all -- our collective will to join together to help each other make the best of things or come to grips with the worst of things.

     

    It can fortify a patient or caregiver to see examples of people who have already walked the path.  Taking courage from their example can help build our resilience.

     

    That said, one thing many stories point out is how helpful it was to seek wise counselors and get evaluated and treated for depression that often accompanies autoimmune diseases, because depression can trash quality of life far more than scleroderma can.

     

    What I've learned, from decades of living with scleroderma and decades of being here, is that scleroderma, and any life-threatening illness, changes how we look at the world. It makes us either re-evaluate what we want out of life, or to try to escape the re-evaluation. We either milk the sadness and grief for all it's worth and stay there, or we experience it, seek wisdom, and grow stronger, somehow.

     

    Many of us have grown strong enough to contribute our remaining talents and energies to the cause of scleroderma, worldwide, through our nonprofit agency here, or through others. 

     

    Many have found the time, freed up from work, to develop or devote themselves to their real passions, such as writing or art, or even making an impressive swirl of toothpaste on our toothbrush each morning, to declare to the world:  move over, we're still here, with no plans of going to our glory, at least, not today.

     

    Today, we'll cry if we must. We'll laugh if we can. We'll try to sprinkle some joy and happy memories about, like fairy dust! Tomorrow will, quite simply, just have to take care of itself.

     

    :hug-group:


  7. Hi Khohu,

     

    Welcome to Sclero Forums!  I'm glad that you've joined us to get more information for dealing with your mother's scleroderma.

     

    As Jo and Amanda both mentioned, scleroderma affects everyone differently, and it's a very rare disease, so the most important thing is to see that your mother is being treated by a listed scleroderma expert, if at all possible. We have lists of them on our main site, for both the U.S. and around the world.

     

    :hug-group:


  8. Hi Louise,

     

    Are you feeling any better than how you were doing a few weeks ago?

     

    With scleroderma, even though a thousand symptoms are "normal" for it, so to speak, we all still need to see our doctor anytime a new or worsening symptom sprouts.  I've found that very often, it is something quickly and easily treated, and it might not be due to scleroderma at all.

     

    This is where a great primary care doctor comes in handy, for you to see between visits to a scleroderma expert. Please keep in touch, and let us know if you are feeling any better yet. I'm sending good thoughts your way!

     

    :hug-group:


  9. Hi Mando,

     

    I sometimes find it hard to figure out what is causing increasing fatigue. Sometimes it is due to going off a medication that reduced fatigue, or then to issues surrounding why the medication had to be stopped, or to other yet unidentified issues.

     

    For myself, I always assume that if there is any stress around, that it will worsen any/every symptom and especially fatigue. So I try to tackle stress in every way I can, which always pays its own benefits. I simply pull out all the stops for things that make me feel happy or relaxed or refreshed. Health stresses and worries can hijack our brain in a split second, and disrupt our sleep and relaxation very quickly, even when we are otherwise quite resilient.

     

    Developing and expanding your resilience will be your best ally right now. That, and seeing a cardiologist who can give you some straight answers and reliable guidance, going forward. Keep us posted on how things progress. We are always here for you!

     

    :hug-group:


  10. Hi Amanda,

     

    That's a very interesting question. And frankly I'm not quite sure how to answer it, either. I mean, I suppose there's two answers, one being a specific person's experience with pins and needles, and another being what sort of attack in general would be considered to be related to Raynaud's, or not.

     

    I do get pins and needles with some, but not all, Raynaud's attacks. Usually it is when the blood flow is restoring itself, and typically that is rather brief. And I'm aware that it was an attack so I'm doing something to rewarm at the time.

     

    If I was experiencing something more prolonged than a few minutes (or so) of a specific attack, or more widespread than just my hands or feet, why, then I'd be concerned that maybe something more is going on, and seek the advice of a scleroderma expert.

     

    Also, I'd be concerned that this appears to be positional, rather than cold/stress induced, like Raynaud's.  So, between being so prolonged, and positional, if it were me, I wouldn't very quickly or easily accept Raynaud's as being the entire answer.

     

    But of course, I'm not a doctor, and my First Aid Certificate has lapsed, and even my First Aid Kit needs refreshing! 

     

    Please let us know what you find out, won't you?  In short, I think you're very right to at least question this, and to press for more comprehensive answers.

     

    :hug-group:


  11. Jo, I want to be the first to congratulate you on your promotion to Webmaster of SD World, which is about the most well-deserved and hard-earned promotion there ever was around here!

     

    For a little background so that others can appreciate this major milestone.  In January 2015, Jo was promoted to Assistant Webmaster of our main SCLERO.ORG website, and began an intricate and arduous training program to learn html language, Dreamweaver, our complex main site development of over 2,000 -- and in 23 languages, no less!

     

    Part of her training course was self-training for the software. That was supplemented by weekly Skype training by me, with sessions lasting from one to three hours. After about a year, she had the gist of our main website and was very proficient at working with our existing code and building new content daily. She had learned about all sorts of scary things, like javascript and php, clouds, caches, htaccess files, robots texts, sitemaps -- why, the list was virtually endless!

     

    In the process she achieved a significant goal, and nearly had a heart attack, when she fulfilled our requirement to accidentally take down our whole site, forums and all, from the internet. It's like a rite of passage for webmasters around here, and a great test of our emergency preparedness, too!

     

    After a year, she earned the privilege to be Assistant Webmaster of SD World, as well.  As I explained above, SD World was a website that was started by Judy Tarro in the late 1990's, about the same time as I began the sclero.org website -- which at the time was known as "Scleroderma from A to Z".  Jude and I became very close friends over the years, and she was an enormous booster of our website and the eventual nonprofit agency that we became. 

     

    Jude was very active in our forums, where her handle was "JudeTheGrouch", and it cracked me up every time I saw it, as Jude was one of the cheeriest people you'd ever met.  Jude, Syl, and Lin formed the heart of SD World and their fun-loving bent enlivened and warmed our whole community.

     

    When Jude passed away in 2009, she willed her computer and her SD World website to the International Scleroderma Network, and we kept her site online.  However, website coding standards are continually changed and being about a decade out of date takes a huge toll on any site.  But this created an ideal challenge for Jo, who was ready to learn about old coding, how to create her own CSS styles from scratch, and how to think through the actual development of a site and it's templates, from the ground up.

     

    So for the past year, Jo embarked on her SD World training course, again with weekly Skype training sessions with me. This time, she learned how to intentionally delete a site, which she happily found was much more relaxing than doing it by accident. She learned CSS inside and out, made her own templates, painstakingly rebuilt page after page of Don and Karol's trip, and conference photos. She was waylaid for a few weeks playing the games on Jude's site, such as Marbles and Jigsaw puzzles.

     

    She worried endlessly over whether or not Jude would like what she had done and was doing to the site. I'm sure you'll all agree with me that Jude would be absolutely thrilled with Jo's amazing efforts in keeping Jude's fun and loving spirit alive and well, and preserving such an Internet treasure for all of us.

     

    Congratulations, Jo, on an outstanding job on a lovely site, and for fully deserving the right, honor, and privilege of being Webmaster of SD World!

     

    I say, it's time for another Sclero Happy Dance!

     

    :hug-group::hug-bear::jump-for-joy::yes::you-rock::woo-hoo:

    :happy-dance-line: :happy-dance-line: :happy-dance-line:


  12. I'm pleased as punch to announce that Jo Frowde has been promoted to SD World Webmaster and has restored the coding for the website to current standards. Jo is also an ISN Assistant Webmaster for Sclero.org, ISN News Manager, Manager of Sclero Forums, Sclero Forums Chat Host and an ISN Hotline Support Specialist.

     

    SD World began as an email list that was started by Judy Tarro. It was dedicated to providing a place where those who suffer from scleroderma and other autoimmune problems could gather in a warm, friendly forum for an upbeat, open and free exchange of thoughts, ideas and information.

     

    Jude passed away in May 2009, and left her website to the nonprofit International Scleroderma Network (ISN) at www.sclero.org, where she was also a valued volunteer, up to her very last day. (Also see Sclero Forums, and How to Volunteer) Posted 11/11/2016.


  13. Hi Trena,

     

    The "Range" means that anything within those numbers are Normal. As far as I can tell (and I'm not a doctor, in fact I have no medical training at all), the numbers you listed are all in the Normal range.  I can't tell where your ANA number of 9 comes from, or whether or not that is Normal.  Most online systems will flag values that are too high or too low, but keep in mind too that many items can be out of range without signifying a big problem.  For example, usually when we are dehydrated, a lot of values will be high or low, but the doctor can easily infer that it was only some dehydration.

     

    Therefore, it really helps to review blood work with your doctor. And like Jo said, blood tests are not the be all and end all of scleroderma diagnosis. The really important question is, what symptoms are you experiencing that triggered the testing in the first place?

     

    Please let us know what you find out from your doctor, as well.

     

    :hug-group:


  14. I'm fascinated by this article on moldy bagpipes causing lung inflammation, in that sometimes the causes of medical mysteries are found at home, in hobbies, at work...and not in the doctor's office. And, who would ever suspect a musical instrument of causing disease?

     

    Many of us are not aware that mold can grow in surprising places, such as refrigerator drip pans, washing machines, sink overflow valves, in garbage disposals, outdoor furniture, golf bags, in chimneys, trash cans, around window panes, underneath wallpaper or carpeting, inside air conditioners or tubing, etc.

     

    Scleroderma lung involvement can certainly be worsened with mold exposure, so a reminder to us all that it can literally be lifesaving to deal with mold, as soon as we see it or smell it or suspect it, anywhere in our environment.  Even in our bagpipes! 

     

    Where could mold be hiding near you, either at home, or at work, or at play?


  15. Hi Lucysin,

     

    Welcome to Sclero Forums! 

     

    Sometimes surgery can help with localized scleroderma (linear or morphea) lesions. However it is a good idea to consult an expert and not just any run-of-the-mill dermatologist. It might also be possible to get some improvement with disease treatments, such as UVA1 Phototherapy, which seems to enjoy over an 85% improvement rate for localized scleroderma. 

     

    As I understand it (and I am not a doctor, I have no medical training at all), surgical treatment needs to be delayed until the disease is in remission (not actively getting worse).

     

    Another aspect to consider is counseling, and that doesn't need to be either/or (surgery or counseling) as it can be both, together.  I find that it is necessary to always develop an attitude that is bigger than the problem at hand. Sometimes that requires an enormous attitude, that is not easy to come by naturally. Coping skills learned in counseling can benefit all aspects of life, and help us deal with even bigger problems that always eventually come down the pike, for all of us.

     

    It's possible to be happy and have a delightful life even with horrible disfigurements or missing body parts, and it's also possible to be entirely miserable due to a tiny pimple.

     

    Also bear in mind that many super models look just awful without their makeup on, and claim your right to be less than perfect but totally happy with it, because in the end, people respond to our attitudes much more than our looks.

     

    It's worth doing whatever you can to feel better about yourself.  Crank up the attitude factor, use makeup with joy and aplomb, and check out all the medical remedies available to you, as well.  And keep us posted on how you are doing, and how you are feeling. We are always here for you!

     

    :hug-group:


  16. Hi Casey,

     

    I'm sorry to hear that your mother has scleroderma, and that she's having such a difficult time adjusting to it.  It's super that she has a listed scleroderma expert, and that she's on IVIg.  Treatments often take time to kick in, and simply stabilizing disease can be a huge improvement.

     

    Talking about offing herself certainly sounds as though she is suicidal, unless she's always been the dramatic sort and frequently refers to things like that, but not seriously. You and your family need to be the judge of what's normal, what's not, but suicidal talk is a medical emergency and worthy of a 911 call, especially if you can't be there in person to assess the situation. At the least, her medical team should be made aware of how she is feeling, because there are enormous opportunities for her to feel better, function better, and enjoy life more.

     

    Scleroderma is not a *reason* to be unhappy but it is certainly an opportunity to learn that inflammation can affect the brain (causing depression), and that we all need to find new/more/better sources for support when we develop chronic illness. It's normal for the good-times friends to evaporate into thin air when something serious comes along, but they might be reacting more towards her attitude, than her illness.

     

    This forum would be a super place for her to hang out, once she has her feet on the ground, but we aren't professionals and can't do the heavy lifting that may be required first, such as perhaps medication or counseling, if they are necessary. Which, from this distance, it sort of sounds like. Sadly, depression can cause an even quicker demise than scleroderma, so it's nothing to ignore.

     

    Many of us are living with all sorts of varieties of scleroderma, and still enjoying happy marriages, delightful family members, and we have developed new friendships far and wide. But very often that has been with the assistance of our doctors, psychologists,and counselors at home at first, to help us learn how to turn lemons into lemonade and to develop the extra coping skills that all sorts of new frustrations and disappointments. With help, your mother can return to her cheery natural self, find fresh joy in her life, and develop new hobbies and friendships.

     

    Please be sure to get the maximum support resources for you and your family, too. It's a stress on everyone, and should never be underestimated.

     

    She's off to a great start, with a diagnosis, an expert, and a treatment. You can all get through this phase, I'm sure, but feel free to rely on all the professionals that you need to do so most successfully.

     

    :hug-group:

     


  17. Hi Kathy,

     

    Well, it's interesting that you won't be treated for Grave's right now.  If you have any doubt at all about your treatment plan, be sure to seek a second opinion from a board certified endocrinologist, because it sounds like you are experiencing uncomfortable (and treatable) symptoms.

     

    Also, please be sure to read up about "thyroid storm" which can occur with untreated and undertreated Graves disease. It's a very sudden, life threatening condition, so if you are aware of the symptoms you will know if/when to seek emergency care. It's also a good idea for people close to you to be aware of thyroid storm symptoms, in case you are feeling too grouchy or sleepy (from the storm) to react. It's not that it definitely would happen, just something to not take any chances with, either, especially since you are symptomatic but untreated at the moment.

     

    I'm delighted that your marriage is "back online".  That's the first time I've heard that phrase, so I got a belly laugh from it. It's amazing how a lighthearted sense of humor can help restore relationships (taking things too seriously can be such a downer), so clearly you already have that arrow in the quiver!

     

    :hug-group:


  18. Hello Pam,

     

    Welcome to Sclero Forums!  It's too bad you have such health issues, but wonderful that you are taking charge and tackling the issues head on. Getting the right medical team and becoming educated about your healthcare options can do wonders in improving our happiness and quality of life. 

     

    :hug-group:


  19. Hi Grey,

     

    Resunab is an interesting treatment in phase II clinical trials for cystic fibrosis, scleroderma, and dermatomyositis. They claim that it doesn't suppress the immune system, but rather that it is intended to bring the immune system back down to normal. It's an interesting idea. 

     

    It's usually not helpful to know if someone is in a clinical trial, because they may be receiving the placebo rather than the study drug, and even people on placebos can sometimes improve dramatically. I know how tempting it is to want to know more about such promising treatments, as soon as possible!  But we all have to wait it out. And thankfully, we have very delightful friends to wait it out with around here, don't we? 

     

    Also see: Scleroderma Treatments and Clinical Trials: Resunab

     

    :hug-group:


  20. Hi Avilamay,

     

    I somehow missed your first post to Sclero Forums and just found it now.  I'm very glad you joined us, but sorry that it's because you came down with scleroderma while you were pregnant. It must have been jarring to deal with such worrisome health issues while you were pregnant. I mean, there's never a good time to be sick, but there are worse times to be sick, and pregnancy is one of them as it creates a concern for both you and your baby. 

     

    Jo has answered your questions fully, as usual (isn't she just the tops?!), so I have little if anything to add. I would really urge that you consult one of the listed scleroderma experts, though. There are new breakthroughs all the time for scleroderma, and an expert can give you access to clinical trials and breakthroughs. 

     

    Have you figured out how to create a forum avatar yet?  We'd love to see what you'd choose for an avatar, and I look forward to hearing more from you. Here are some warm hugs for you, and a teddy bear hug for your baby.

     

    :hug-bear:

    :hug-group:


  21. Hi Wilson,

     

    Well, you raised an excellent question. Here's a comprehensive article, Proteinuria in Adults: A Diagnostic Approach by American Family Physician.

     

    As you can see, figuring out the cause is quite complicated but it needs to be taken step by step.  There are many things that can give it a false positive, so usually they are concerned about the overall pattern, rather than a single test.

     

    That article includes a flow chart, which is very helpful in sorting out how to proceed with the diagnosis. Scleroderma would be a very rare cause of kidney failure, of course, simply because it is so rare, whereas hypertension and diabetes would be far more common causes.  And, even people with scleroderma can acquire diabetes (etc.), so everything needs to be considered in the beginning.

     

    I hope that your doctors are able to sort it out soon for you!

     

    :hug-group:


  22. Hi Margaret,

     

    I'm sorry that you've had the worry over positive ANA, but I am glad that you were fortified enough to deal with it thanks to your participation in the forums all these years for Gareth. Imagine how much scarier it would all be, if you didn't know about false positives and the importance of symptoms when it comes to autoimmune disease. I hope things go well with the remainder of your tests, keep us posted.

     

    Jo, I shouldn't laugh over the horse doing the "hokey-cokey" on your foot but I really can't help chuckling from how you phrased it. Your lively sense of humor takes the sting out of so many things, doesn't it? 

     

    I'm also very grateful for the ISN and for the truly marvelous people, both those who help in a million different ways, and those who hang out here. It makes and keeps this a very special internet cubby hole, doesn't it?

     

    :hug-group:

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