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Shelley Ensz

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Posts posted by Shelley Ensz


  1. Hi Ashley,

     

    I should add that it would be a great idea to seek counseling for being "terrified" of getting your heart and lungs checked.  This entails entirely painless and harmless tests that are extremely common.  The fact that your doctor ordered them means next to nothing, as they typically order the tests to get a baseline, which is helpful, often many years later, to figure out if there has been any silent or significant disease progression.

     

    It's not the least bit normal to be terrified of regular, everyday medical tests, regardless of whether you are healthy or sick.  The odds are tremendous that your test results will be perfectly normal.  To have an exaggerated fear is called a "phobia".  Phobias can be very quickly and easily remedied through very simple counseling procedures.  Of course, maybe you were just being a bit emotional or dramatic at the moment and don't actually harbor a phobia over this.  If you do think you might be on the phobia end of things, it's a great idea to address it head on with your counselor.

     

    Sadly, some people let their fears rule the day. It causes them to skip recommended preventative medical or dental care, in which case the phobia turns out to be life-threatening.  It's entirely unnecessary to live with exaggerated fears, and there are very simple, easily taught and easily learned techniques for overcoming them.  It's not a long, involved, difficult, or even frightening process.

     

    Please let us know when you've succeeded in having your tests completed.  And perhaps you can also then help others here by letting them know how you managed to overcome frights and fears or phobias to deal realistically with health issues.

     

    :hug-group:


  2. Hi Erick,

     

    Welcome to Sclero Forums. 

     

    The rule of thumb we use is to give ourselves two weeks to adjust to the idea of possible scleroderma, and if we aren't on an entirely even keel at the end of that time (eating well, sleeping good, enjoying life again), then we strongly recommend medical consultation to see what can be done to bolster spirits.  It's very challenging to deal with any illness, and we need all our wits about us to manage it with aplomb.

     

    Please bear in mind that I'm not a doctor, in fact, I have no medical training at all, and verify everything I say with a reliable medical source, as I am far from perfect!  As I understand it, many of the symptoms you mention sound like they might correlate more with anxiety than scleroderma; certainly, to the best of my knowledge, visual snow and intrusions are not a scleroderma phenomenon.  Tinnitus and Raynaud's can also be triggered by anxiety.  Since your blood work is good, but you are fearful of cognitive decline, for some reason or another, perhaps you could get a neuro/psych eval to see what might be going on.

     

    In fact, at most of the major medical centers, if a patient shows up with a bunch of various symptoms at once (like I did), they often send them for a thorough neuro/psych eval straight away (like they did to me).  That's because its very common for symptoms of mental and physical illnesses to overlap, and for physical illnesses to have psychological components, etc.

     

    Many of us around here have lived for many years with various types and severity of scleroderma.  We are able to have pleasant, if often reduced or modified, social lives.  Many of us still work and have found ways to live with our symptoms, and to work around them. Many of us also have more illnesses than scleroderma to deal with, too, or have psychological complications of illness. I've survived not one, but two divorces, and also been widowed after 33 joyful years; so you are not alone around here with the "stuff happens" phenomenon. I've found that counseling can be enormously beneficial for developing the extra coping techniques necessary to make healthy adjustments to any illness or pitfalls of life.

     

    Once we get our feet on the ground, then things like our forum can help us stay afloat, and make friends throughout the world.  Please see what you can do to get more in-person help and support to get you over this hump. Think of this as a valley, and that you are going to start climbing uphill now to see the view from the top. Climbing takes extra effort and may even take the wind out of you from time to time, but keep on going.  The view is worth it!

     

    :hug-group:


  3. Hi Ashley,

     

    Well, it's possible that he might have a little bit more experience in diagnosing scleroderma, than either you or I.  It's totally fabulous that your nail beds are clear and that you don't have Raynaud's! 

     

    Get the heart and lung testing done, whenever they schedule it and wait for the rest of the blood test results, too.  If after all that is completed you still doubt your doctor's expertise or conclusions, you could always get a second opinion if there is a sound medical basis for it.

     

    It's quite possible to have telangiectasia without having scleroderma, in fact, nearly any symptom of scleroderma can be part of another illness or occur in otherwise perfectly healthy people.  That is why diagnosis requires a combination of various symptoms and test results, and why some symptoms, like skin tightness and pulmonary fibrosis, carry a lot more weight than others.

     

    While you're waiting, please rely on your counselor for help to see you through, as none of us are capable of virtual diagnosis, nor can we provide enough assurance to assuage health-related anxiety.  This is a great time to learn some new coping skills, while you wait on tests and more test results!  Building up your resilience surely will help you, whether you pass or flunk your next round of tests.

     

    :hug-group:


  4. Hi Chris,

     

    I did a little digging and discovered that you were right; as it happens, the page you were looking at on our main site does not include the Royal Free Hospital, as they haven't submitted their page listing yet.

     

    However, they are listed in the Eustar and SCTC lists, so I've added those resources to the web page. Bear in mind, those resources are generally not updated as regularly as our pages. Also to save you a bit of time going through the more cumbersome lists, here is the link to the Royal Free Hospital London contact page.

     

    You may also be interested in our Morphea Treatments resources. Perhaps you could ask your expert about the possibility of phototherapy.

     

    :hug-group:


  5. Hi Elzunia,

     

    Welcome to Sclero Forums.  I'm sorry you have concerns about possible scleroderma.

     

    I agree with Jo, I think you might benefit from consulting a scleroderma expert.  It's often difficult to arrange an appointment, as there are only a few dozen experts in the United States, but scleroderma is so rare that most rheumatologists may see only one or two cases in their entire career -- and they are very unlikely to recognize anything but the classic, advanced-disease textbook case.

     

    With Raynaud's and centromere antibodies, you still might have a "wait" for a diagnosis with a listed scleroderma expert.  It's possible they might think you're early stage and that it might sort out to be another autoimmune disease in the end.  So you may be left with not much info and regular follow-ups for awhile, until things are well established. But you have obviously figured out that you are going nowhere, fast, with your local doctors.

     

    :hug-group:


  6. Hi Ashley,

     

    Welcome to Sclero Forums.  I'm sorry you have worrisome blood test results and hope you have a good appointment with your next consultant.  In order to improve the odds of it being a useful meeting, I'd recommend that you seek out counseling ahead of time, and do everything you know to subdue the anxiety and panic attacks, such as taking your medication as prescribed, getting appropriate exercise, eating right, and challenging yourself to learn something new, that is not scleroderma-related.

     

    A comforting idea for you to keep in mind is that about 20% of blood tests are just plain wrong. Your result may have been a mistake and you might never get that result again. If you find that thought discouraging, then you might actually be experiencing over-the-top excitement with the idea that you'll have a diagnosis and none of this was in your head, etc. I mention this because there is such a very fine line between anxiety and excitement that sometimes when I'm feeling anxious, I can just force a smile and then call the apparently same emotion excitement!

     

    Of course, that's just a layman's stab at trying to quell the situation you're in. As you can tell, we certainly try to be helpful, but we are not mental health professionals. The guideline we all use is that if we are still upset, and not back to normal (with our attitude, diet, sleep, everything) within 2 weeks of learning of the prospect of a serious illness, then we really need to seek professional help. Support groups all naturally have severe limitations, and are only helpful once we are basically well-balanced.  And believe me, many of us have sought outside help to get on an even keel, even those of us who didn't suffer from anxiety or depression in the first place.

     

    Bear in mind that your doctor will want to focus on the facts of your situation, so to participate properly in your care, as an adult, the responsibility lies with you to come to grips with things emotionally and to be able to rightfully assure them that you can handle both good news and bad.  The harsh reality is that the doctors often withhold a serious diagnosis if they feel a person cannot deal with it emotionally, because that would often be doing more harm than good.

     

    I've talked to some people who thought that the doctor would diagnose them faster if they knew how upset they were about the prospect, and that crying or tantrums would help speed things up or encourage the doctor to take things more seriously, but exactly the opposite is true. The doctor is more likely to become focused on tamping down anxiety, which might lead to over-reassurance that they are physically fine and perhaps even over-attribution of symptoms as being only due to anxiety.  And really, if the anxiety isn't under the best possible control, you have to admit they might have a point, as anxiety can wreak all sorts of havoc with physical symptoms from head to toe.

     

    But, by focusing on doing everything in your power, putting into action all that you know will help you stabilize emotionally, then you put yourself in a position to get your physical concerns promptly addressed.  One thing that sometimes helps me, when I'm tempted to worry-wart something, is the thought, what if I'm wrong, how foolish will I feel for having wasted all this time and energy and sleeplessness over NOTHING?  I dislike feeling foolish, so that tends to help me put it aside and sleep better.

     

    Please pardon my frankness, but for fear of death, welcome to the human condition. Nobody gets out of this alive. It doesn't matter if it is scleroderma or cancer or heart disease or accident.  Therefore, I don't see that soothing your concerns about scleroderma will actually help in the least.  Should we manage to soothe those fears somehow, the same fear will just transfer to something else, like cancer or heart or whatever.  The bottom line is that most of us need to come to some sort of comforting idea about death, either through religious faith or logic; the logic being (if you are not religious) that then death is a nothingness. And if it's purely nothing, then what on earth do we have to be worried about?

     

    A good counselor helps us face our bottom-most fears, not just live with them or medicate them away. I'm sorry that we can't be more help on the matter, but as you've already discovered with Dr. Google, scleroderma is usually not a walk in the park, but with the right attitude and support, we can get through it anyway, sometimes by trodding slowly, sometimes on tiptoe, or, like Jo, sometimes even merrily skipping...anyway!

     

    :hug-group:


  7. Hi Inkedup,

     

    It's likely that with a single shot of steroids, you will enjoy all the benefits but few if any of the side effects.  Unfortunately, steroids are just not a good long term option for scleroderma, as Jo will be the first to tell you.  See Warnings for Scleroderma and Steroids.

     

    So, enjoy this boost while you can!  It should give you a fair idea of how much better you'll feel when the plaquenil kicks in, which may take weeks or months to get the full effect, as it doesn't have the immediate effect of steroids. I say, we should rejoice and enjoy absolutely everything that offers relief, no matter how short or long lasting.

     

    Investing our feel-good times for long term benefits is also great. When I feel a bit better, for whatever reason, I try to think in terms of doing things that I'll appreciate when the interlude is over. Such as cooking up a storm and freezing it, or even organizing a pesky closet.

     

    Also, be sure to invest some energy, if you can, in doing something memorable!  Take the time to indulge in social events or hobbies, or something you've wanted to do but haven't had the oomph to do for awhile. My recent feel-better foray was to a comedy club. Then savor your special events; take photos and replay the happy memories, defrost the frozen meals, and appreciate the clean closet if/when the tide turns again.

     

    Dance, dance, dance -- while the gettin's good!

     

    :happy-dance-line:


  8. I have had multiple autoimmune diseases for many decades, and I have had the symptoms of nearly all of them wax and wane over the years, with what you might call repeated "remissions".  Sometimes the improvements occur on their own, without any special treatment, but sometimes they are inspired by treatments. 

     

    Often, many of my autoimmune diseases relax their grip at once, allowing for some of my more pleasant interludes. Therefore, I never give up hope that something -- anything -- might improve any minute now, or any day now.

     

    I believe that hopefulness, and gratitude, are essential to helping trigger a relaxation response, which helps our bodies create more helpful neurotransmitters than those triggered by worry and dread and negativity. So in addition to medical treatments, I find it helpful to focus on anything that will help uplift my attitude: music, art, friendship, comedy, work, nature, floating, activity, faith, pleasant aromas, touch, pets, hobbies, singing, tasty and nutritious food.  In other words, letting ourselves be open and nourished by life in all its glories, instead of drained by it.

     

    Many medical treatments for autoimmune diseases are more like shotguns than bullets. That is, they affect the entire immune system, and not just one little bit of it.  Various issues, including so many overlaps, make a lot of treatments contraindicated for me. But still, I've had many benefits, and what you might want to call stabilization, waning, or (more loosely) remission, from things like plaquenil, UVA1, and IVIg.

     

    To me, there always seems to be a certain emotional danger to autoimmune disease.  That is, we can get so focused on pursuing a remission that we forget to focus on all the natural ways that we can improve our mood and our lifestyle. It is easy to look only towards medical treatments for improvements, whereas, I think we need both oars in the water to make any worthwhile headway living with autoimmune disease.

     

    I like to continually be on the lookout for ways to increase joy and relaxation in life, because they are part of the stew that helps make our treatments (or even the lack of them) work most effectively.  Plus, if any particular treatment fails, how bad is it really, if we've still managed to increase our joy and satisfaction with life, along the way?

     

    :hug-group:


  9. Hi Sqasirkent,

     

    Welcome to Sclero Forums. I'm very glad that you've found several things -- an accurate diagnosis early on, a scleroderma expert, and our Sclero Forums.  With treatment, you will likely start to feel a bit better, and have the symptoms settle down a bit.

     

    You'd need to talk to your scleroderma expert about the odds of returning to work anytime soon. It takes an awful lot of energy to heal, so be sure to provide your body with the rest and relaxation that it is probably craving right now.  

     

    If it looks like you won't be back to work within the month, which is likely the situation, be sure to apply for disability benefits, including Social Security Disability.  If you suddenly get lots better, you can always drop your claim.  Otherwise, with every passing day you are in danger of losing some benefits.  We recommend that anyone in this position consult a good disability lawyer, at their soonest opportunity.  There is no charge for such consultations; the lawyer you choose would only get a portion of your initial settlement (and that is limited by law.) You would likely qualify for Compassionate Review due to scleroderma, which doesn't guarantee you'll be approved, but it does guarantee that your case will get reviewed quickly.

     

    :hug-group:


  10. Hi Jordan,

     

    Welcome to Sclero Forums. I'm very sorry your mom has scleroderma, and send my best wishes to all of you.  As Jo pointed out, scleroderma is hereditary in only about 2% of cases, where it is known to run in the family.  Scleroderma predominantly strikes females (at least a 3 to 1 ratio of women to men), so that further reduces your odds.

     

    This means your risk for scleroderma is very low, compared to the more popular ailments.  Thus it is far more likely to pass away from heart disease, lung infection, HIV/AIDS, or COPD.  You are at an age where you can develop good health habits that will likely help you sidestep most of these to increase the odds of living healthfully to a ripe old age. Eat well, get fresh air and exercise, practice safe sex, and steer clear of any sort of smoke or street drugs. Find some healthy sources of happiness and joy every day, to inspire you to keep on living well, and to help buffer the stress of your mom being so ill.

     

    Most of all, remember we are always here for you, and you are always welcome here.  Most of us would rather have scleroderma ourselves than to watch a loved one suffer with it.

     

    :hug-group:


  11. Hi Margaret,

     

    It sounds like that is good news, all around, for Gareth!  Isn't it delightful to get some good news, for a change?

     

    I had to laugh at Jo's comment, that all the best people have a port.  As she knows, I had to have my first port removed, and a second port put in, last week. My first one got a fibrin clot that couldn't be dissolved.  What I learned from that is that at the very first sign of a port not functioning beautifully, like not getting blood return or needing to try several different positions or needles for access, it's a sign the port needs to be checked by interventional radiology (IR). 

     

    They can instill a medication into the port to easily dissolve the clot, which is simply a build up of scar tissue. But, I didn't know that, and I waited way too long to report the issue, so the usual "draino" didn't work. My new port works like a charm!  Gareth will learn to love love love the port. It is a zillion times better than getting poked all over, and so much more comfortable.

     

    I'm glad his weight loss stopped...and that he didn't have to give up every good food known to man in order to make that happen!

     

    :hug-group:


  12. Hi Dimarzio,

     

    Clearly, your doctor is not going to be a great source of enlightenment on the topic of scleroderma, and your wife is not in the running for the ISN Supportive Scleroderma Spouse of the Year award -- at least, not for 2017.

     

    Spouses tend to be a bit hard to get rid of, and generally they earn their keep through all sorts of other thoughtful little (and big) things they do, so I'm sure you count your blessings for the other ways in which she shines.

     

    Should it help you at all, I've also had doctors, close loved ones, and friends who didn't understand, or choose not to understand, anything about scleroderma. It's easier for them to think of it as a form of hypochondria, than to learn the (often scary) facts about it.

     

    So I developed a policy. If it's a doctor who is a scleroderma dunce, I'll change them IF the issue involves a critical aspect of scleroderma (or the illness in question). 

     

    If it's a loved one, I'll love them anyway and not make my loving response dependent on their understanding of me or my illness. As part of that, I quit trying to convince them that I'm sick in any way.

     

    I've even kept friends who didn't "get it" at all, provided we have other interests in common. 

     

    I do wish that when I first got sick sick (not cold or flu sick), that someone would have warned me that I'd be running into all sorts of disbelievers -- especially when it comes to weird and rare diseases like scleroderma -- and that they will remain that way, no matter what I say or do.

     

    On top of that, I wish they told me that it was okay. That I was not alone. And that I could still love such people with all my heart, even if they never "got it".  It's not my job to help them get it, either.  It's my job to take the best care of my health, and my sanity, that I can.

     

    Sometimes, that entails just ignoring the naysayers. Often it entails just forgiving the naysayers. Always, it entails holding our head high. We've done nothing wrong, except acquired a sickness that hardly anyone can spell, few can pronounce, and hardly anyone can explain!

     

    :hug-group:


  13. Hi SoulDancer,

     

    Please keep in mind I'm not a doctor, and have no medical training at all, and ask your doctor for input for any/all changes in your health.

     

    I've found that it's not necessary to always use soap to shower, and it can worsen any dry skin tendencies. I've found warm/tepid (but not hot) the baby oil baths to be helpful -- but also a bit dangerous, as it makes the tub very slippery, so be extra careful, if you try it!

     

    Oils can also be used instead of soap for showering, or just plain oil rubs for days you skip bathing.  My favorite is coconut oil. (But again, slip alert!)  I hardly ever use shampoo, instead I just briefly rinse my hair in cool or tepid water most days, and use only conditioner to "wash" it on most other days.

     

    Regardless what you use, or don't use, for bathing or shampooing, avoiding hot water really helps avoid the skin drying out excessively. Following immediately with an oil rub (again, my favorite is coconut oil) while the skin is still damp helps trap that lovely moisture in the skin, as much as possible.

     

    My cat is also loves coconut oil rub downs. It makes her fur nice and silky and shiny!

     

    Try out different oils or moisturizing soaps or water temperatures and routines, find out what works for you to reduce skin dryness.

     

    Also, consider the entire picture. You might also want to consider checking your home humidity and adding a humidifier, if necessary.  Be sure to follow a well balanced diet (don't eliminate fats, for example) and get enough fluids, too, as when we dehydrate, we take our skin right along with it.

     

    Your dermatologist is also a resource for dry skin ideas, and to make sure your skin flaking is not caused by other conditions (such as psoriasis.)  For example, psoriasis makes skin turn over at a faster rate in spots where it occurs, leading to continual flaking; and although it looks like dry skin, it's not, it's just a rapid collection of dead skin.

     

    :hug-group:


  14. 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:


  15. 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:


  16. 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:


  17. 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:


  18. 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.


  19. 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.


  20. 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:

     


  21. 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:


  22. 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:


  23. 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:


  24. 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:

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