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Shelley Ensz

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Posts posted by Shelley Ensz


  1. Hi Dimarzio,

     

    Well, I'd be a bit hesitant to return to a doctor who just wants to "fire enough bullets"!

     

    And, I'd be off to see a real expert, myself.

     

    Perhaps that wouldn't change your treatment plan at all, but it would certainly help me sleep better! :wink:

     

    :hug-group:


  2. Hi Doubleblow,

     

    Welcome to Sclero Forums!  You're certainly right, that would be a double blow.  I know several people with both scleroderma and multiple sclerosis. Unfortunately, overlaps are fairly common with scleroderma. That's why we also have a section on MS on our main site.  See: http://www.sclero.org/scleroderma/autoimmune/multiple-sclerosis/a-to-z.html

     

    I don't have MS, but I do have overlaps of many other things, so I know what it is like to deal with many issues at once. And I'm sure you'll find many others here who can relate to the situation of overlap, if not the particular overlap of scleroderma/MS.

     

    :hug-group:


  3. Hi Dimarzio,

     

    In regards to the diagnosis of Limited versus Diffuse systemic scleroderma, it is usually categorized either by antibodies and/or skin involvement.

     

    But "limited" typically refers to the skin involvement (if any) being limited to the hands or face, and diffuse usually refers to skin involvement that also occurs above the elbows or knees or on the torso. However, either type can affect virtually ANY other part of the body.  So, limited is actually unlimited, too, in that regard. Plus, the risk for pulmonary hypertension is higher in limited than in diffuse scleroderma. And as we all know, the illness is highly individualized, meaning that it just isn't the same in any two people.  Please see Types of Scleroderma on our main site for more details.

     

    Many things that entail fibrosis can occur with or without scleroderma, which is where you'll find that doctors simply don't bother attributing it to scleroderma (or anything else, for that matter).  And generally that doesn't really matter, either, since the treatment (if any) is for whatever it normally is for that particular condition.

     

    :hug-group:


  4. Hi Dimarzio,

     

    As you can see from our pages on the topics, tissue, blood and organ donations can get tricky for a systemic scleroderma patient. 

     

    Interestingly, while blood donation is out, the tissue and organ questions should always be left for the transplant team to sort out. For example, they might pass on your lungs but use your eyes. That's why everyone who is in favor of organ donations -- regardless of their health -- should sign up to be a donor and let their wishes be known to their doctors and next of kin, too.

     

    Now, as far as giving a live kidney donation when you have scleroderma, sadly, that's not possible, because live kidney donors need to be over 18, and in good mental and physical health. Another consideration is that scleroderma often affects the kidneys, so keeping maximum kidney health and function is key to longevity.

     

    Scleroderma isn't contagious, so you haven't infected anyone by donating blood before you were diagnosed.  As I understand it, it's just a precaution that everyone be in good health, to the best of their knowledge, to donate blood.

     

    :hug-group:


  5. Hi Ann,

     

    I thought I'd just toss in that in the presence of a lot of autoimmune diseases in the family, some members get various autoantibodies but then they might get no, or only a few, symptoms. It's possible that since it's so prevalent in your family, that you might have scored the antibodies without the illness.

     

    You do make reference to having other autoimmune issues, so perhaps the antibodies are related to them, or they are related to scleroderma?  You can check with a scleroderma center about it, and see if it's worthwhile to have them see you now, in the apparent absence of symptoms. Bear in mind, of course, that symptoms are generally far more important than blood work for determining the presence and type of disease.


  6. Hi Brenda,

     

    If you have ongoing pain control needs, then you might want to ask your doctor for a referral to a pain control clinic. They can evaluate your pain needs and prescribe treatments.  Often this includes a combination of approaches to fully address pain issues. Such as, you might need physical therapy, chiropractic care, massage therapy, TENS units, surgery, local anesthetics, warm pool therapy, arthritis exercise classes, meditation, cognitive behavioral therapy, music or art therapy, counseling, supplements, sleep studies, hot or cold packs, anti-inflammatory diets, epidurals, injections, and/or medications.

     

    It's best to try to control as much pain as possible as naturally as possible, because the medications bring along their own side effects and potential complications, especially with long term use. Often, developing a wide array of pain strategies can reduce or sometimes even eliminate the need for medications.  Look for a pain clinic that does thorough evaluations and has a full menu of treatment options, such as physical therapy. 

     

    If despite everything else you still need stronger medications, expect to sign a pain contract (at most clinics) and have random testing to be sure that you are using the medication as prescribed. It's one thing to have scleroderma, and quite another to complicate the whole situation with an addiction.  So be wise.  Seek as many resources as you can muster or manage for dealing with pain, including the guidance of experts, and use the tools to make your life as full and productive as possible, under the circumstances.

     

    If the chills are new onset, please check your temperature to make sure you aren't running a fever. Otherwise, I recommend also turning up the heat, drinking warm liquids, eating warm foods, and being sure to eat enough so that the body can generate some heat, too.


  7. Hi Inkedup,

     

    It might be a good idea to discuss your treatment options with your scleroderma expert. There might be an appropriate therapy for you now, or your doctor might also discuss saving the "big guns" for when you have a specific major issue to deal with.

     

    As I understand it, pulsatile tinnitus usually indicates a vascular problem, sometimes a serious one, and thus it is evaluated and treated by vascular surgeons.

     

    You might want to pay serious attention to dealing with stress and everything that entails, because the effects of stress can really complicate our illnesses and healthcare. With chronic illness, the only thing we are really guaranteed is more and more stress and more and more sources of stress.

     

    To remain resilient -- and thus functional -- most of us need to tap every resource possible to maintain our sanity, good graces, and sense of humor. The thing I like most about stress is that our perception of it and how we choose to handle it is largely under our own control.  We can elect to find good counselors and take medications that reduce depression or anxiety.  We can learn biofeedback, practice meditation, study cognitive behavioral therapy, indulge in music or art therapy, develop new hobbies, find new friends -- why, the list of things we can do to enhance our lives through stress reduction is nearly endless!  See Causes of Scleroderma: Stress.

     

    For an idea of the wide array of treatment options, please see Scleroderma Treatments and Clinical Trials.  Also look up your illnesses and symptoms on our main Scleroderma Symptom List, as there may be additional options for those particular items.

     

    :hug-group:

     


  8. Hi Patch,

     

    Welcome to Sclero Forums!  I'm sorry you have morphea and other health issues, too. Like Jo, I also have no medical training at all.

     

    I just thought you may also want to look into UVA1 Phototherapy, which is now widely considered to be the first line therapy for morphea.

     

    It's very noninvasive. It's like a tanning booth, but available only in some dermatology offices. Treatments are only a matter of seconds. The major side effect is getting a nice tan, but because it is also a form of sun exposure, regular full body skin exams are part of the treatment program.

     

    Exercise can get difficult with any sort of chronic illness. If you have a warm pool available, you might want to try out gentle pool exercises, or even just floating in a warm pool, for pain relief. It's amazing how comforting it can be for many people, and especially for arthritis-type pain.  And of course, a scleroderma expert who treats morphea is always nice to have on your team, but they are few and far between in the U.S. but a good dermatologist with interest in skin diseases (not just cosmetic procedures) and a UVA1 phototherapy booth might be quite helpful.

     

    :hug-group:


  9. Hi Mando,

     

    I'm very sorry to hear of your complications with scleroderma heart involvement.  You can read lots more about it at that link. As you'll see, left ventricular diastolic dysfunction is highly prevalent in scleroderma. Heart problems are often one of the first symptoms of scleroderma, and nearly everyone with systemic scleroderma develops some heart issues, whether minor or manageable or major.

     

    You might also be interested in our Patient and Caregiver Stories about heart involvement. You might also take heart from Janey Willis' ISN Profile Page. Janey went through all of that, and was then able to return to work full time!  She is nearing full retirement now and is planning on rejoining us all here at the ISN. Oh happy day! 

     

    It sounds like you now have an accurate assessment of the involvement, and that will lead to treatments and learning how to deal with this in your daily life. Keep in mind that all illnesses can seem even worse, or more depressing, over the holidays. But the inflammation that accompanies illness can also affect the brain and either contribute to or cause depression, which of course, as I'm sure you've noticed, can trash the quality of life far more than scleroderma!

     

    So please, take especially good care of yourself. Make a point of pampering yourself a bit every day. Chronic illness is very hard on our loved ones, too, so it helps for everyone to seek all the counseling and support they can.

     

    May you hold a candle of hope in your heart this holiday season. Scleroderma is a roller coaster, and when we are are the down side of it, it means that we will soon be heading up again. So hold on tight for the ride! 

     

    And remember, we are always here for you.

     

    :hug-group:


  10. 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:


  11. 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:


  12. 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:


  13. 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:


  14. 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:

     


  15. 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:


  16. 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:


  17. 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:


  18. 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:


  19. 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:


  20. 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:


  21. 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.


  22. 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:

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