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Shelley Ensz

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Posts posted by Shelley Ensz

  1. Hi Kathy,


    Welcome to Sclero Forums. I'm sorry that you are sick, and dealing with conflicting opinions.


    If I were you, I'd seek a tie-breaker opinion from a listed scleroderma expert.  Since your illness is not moving fast or aggressively, and you don't yet have prominent symptoms of any particular connective tissue disease (such as a lupus butterfly rash, or tight skin from scleroderma, etc.), you might still have a long wait for a definite diagnosis. And, it might be beside the point if your symptoms remain mild, as about 50% of people with some symptoms of connective tissue disease never go on to develop a full-fledged, more specific, illness. Therefore, it's normal for many doctors to sit on the fence for awhile, waiting to see what else develops, if anything.


    It can be extraordinarily stressful to have reason to suspect serious illnesses, and more stressful to have loose or disputable answers. Most of us find support during this phase to be absolutely vital.  So I want to assure you that you, and everyone else in your position, are very welcome and encouraged to participate fully in Sclero Forums.  We know you know that doesn't equate to a diagnosis. But we know you know that you need and deserve support just as much, if not more, than someone who already has an iron-clad diagnosis.



  2. Hi Gillesley,


    Welcome to Sclero Forums. Many scleroderma antibodies are positive in morphea, and the National Organization of Rare Diseases lists alternate names for lichen planus such as guttate morphea and guttate scleroderma. So, perhaps your antibodies go along with the lichen planus?


    The way to check it out would be to see a scleroderma expert.  In any event, it's important to know that localized forms of scleroderma can occur with many antibodies, and those types are distinctly different from systemic scleroderma. So there is a projected normal life span with morphea, guttate, linear, en coup forms, etc. and they do not automatically progress to systemic, either, in fact, it is very rare for anyone to have both limited and systemic.


    Our in-house exception to that rule is Amanda, of course, who has both. It's possible your illness might be as bad as it's ever going to get. It's also possible that you might be developing another lesion of some sort on your forehead.  But I agree with your dermatologist, as I'd never want to have my forehead biopsied, unless it looked like cancer or there was no other choice, because it might leave a scar or make it more visible or prominent.



  3. Thanks for introducing and explaining this topic, Ed. 


    As you, Kamlesh and Amanda all mentioned, I simply want to reinforce the idea that untreated heartburn can lead to disastrous changes in scleroderma patients, including Barrett's esophagus and even cancer. So it is very important to discuss potential side effects and our alternatives with our doctors, but it can be very detrimental to our health to stop taking any medication on our own accord, just because we read or hear something adverse about it.


    Scleroderma is one thing, and occasional heartburn in healthy people is another matter, and those people may want to review this topic with their doctor if they question whether the side effects might be worse than the condition. For many people, sometimes including scleroderma patients as well, simple lifestyle changes might be all it really takes to put heartburn at bay, such as eating smaller meals, avoiding troublesome foods, elevating the head of the bed by about 4", eliminating alcohol and nicotine, or even not laying down or bending over within a few hours of meals. See our Hearburn resources for more ideas.

  4. Hi Dimarzio,

    That's an interesting question which I don't recall hearing before. My knee-jerk reaction was just like Jo's, that it probably wouldn't help and could make heartburn worse.

    However, I've found an article which said there was one study that showed chewing gum -- or anything -- for 30 minutes after a meal was good for heartburn, because it increased saliva production. See Gastroesophageal Reflux Disease by the University of Maryland Medical Center.
    Gastroesophageal reflux disease and heartburn

    That same article points out other risk factors for heartburn, including smoking, which increases acid production. So, maybe a one-two punch of chewing gum but not smoking after meals might help a bit. Interestingly though, even nicotine patches to quit smoking can cause heartburn.

  5. Hi Sandi,


    If your rheumatologist says you have scleroderma, and you have no reason to disagree with it, but your primary care doctor disagrees....then you need a new primary care doctor, pronto, as they could actually be hazardous to your health, not to mention your sanity. 


    When you establish care with a new doctor, be sure to bring records from your rheumatologist, so they aren't just taking your word for it.


    Please keep us posted on how things are going for you.



  6. Hi Sandybeach,


    How long have you had limited scleroderma?  If you have a new diagnosis, the stress of the adjustment period can cause fatigue. If you've had it for over a few years, and this is a new development, you should see your scleroderma expert to be sure that you don't have any new complications, such as inflammation or an underlying sleep disorder, or overlap of another condition, such as fibromyalgia.


    Sometimes fatigue can be relieved by antidepressants, not necessarily because you are depressed, but because many of them can also improve sleep and relieve pain. I've tried several antidepressants over the years, even though screenings for depression and mental health issues were negative. One I tried for bladder spasms, way back when, but it only succeeded in making me lots worse and no better.  Another one hugely relieved my fibromyalgia pain, but I then developed adverse side effects and had no choice but to wean off of it.


    So, just because a doctor is recommending antidepressants, don't assume it means he thinks you have depression. Unless he flat out says so. Also don't discount the fact that depression is a normal complication of chronic illnesses as we find ourselves less and less able to do normal activities. Do think back, and see if you can recall whether or not you are laughing and smiling and joking around as much as you did before your diagnosis. Do you basically feel happy and cheerful, and eager to have as much fun as your body will let you?


    Or, are you just languishing in your down time, laying in bed and worrying rather than reading a book or listening to beautiful music?  And, are you putting limits even on joyful activities, like grandkids, which I find worrisome that you refer to as "days", since I likely couldn't survive even an hour or two of little ones and the constant energy and attention most of them demand.


    As for not doing the shopping, two thumbs up for you!  I joyfully eliminate any activities that I do not find refreshing or challenging or fun. My time needs to be invested in sustaining my joy, and not depleting it. If I loved shopping, though, I would insist on doing it myself as much as possible!


    Maybe you're contemplating disability, or working part-time instead of full time. Sometimes that is an option with scleroderma, but that depends on your symptoms and their severity, too. If it's on your mind, be sure to discuss it with your doctor and lawyer before making *any* changes in your work schedule, so that you know what your legal rights and potential benefits are.


    Anyway, I hope you find ways to get the absolute most joy out of your life right now, with whatever energy you possess at any given moment.



  7. Hi Dimarzio,


    If moving around makes you feel better, by all means, do it! 


    On inclement days, perhaps you could watch and follow some arthritis exercise tapes, or get some indoor exercise equipment, or go to a nearby gym or warm pool. Exercising indoors is great, and doesn't have to cost a thing, nor even any equipment!  I often set the timer for however long I want to walk, and then just make loops through my place. It's a very small place, so I walk around mostly in tiny circles, but hey, it's a lot better than nothing.


    I also use simple things, like a soup can to do arm curls, or try to lift a cast iron pan. Look around your place, see how inventive you could get. Consider doing stretches while waiting for things to cook, or marching in place while brushing your teeth.  I always incorporate some simple stretches into my shower, as it is easier to move when the muscles are warmed up.


    Think outside the box to reclaim the activity that you are craving!  Why, you could even claim it as a new hobby!



  8. Hi Sharonjean,


    Welcome to Sclero Forums!  I'm so glad that you've found us. As part of our community, you never need to feel alone in dealing with the effects of scleroderma. Although each of us experience the illness differently, with varying symptoms and progression of various types of scleroderma, we all know how it is to have a health issue to cope with.  Here's a welcoming group hug, just for you:



  9. Hi Dimarzio,


    I'd be happy to try to answer some of these questions.


    Yes, I quit smoking.

    I quit smoking years before my Raynaud's or scleroderma was diagnosed, so the other questions are moot.


    However, I have personally witnessed smokers with scleroderma having their fingers, toes, hands, feet and even legs amputated, usually piece by piece. One of my friends had two fingers amputated before quitting smoking, and after that had no more amputations of any sort.


    When I was diagnosed with Raynaud's (after vascular lab testing), my doctor gave me a very stern lecture, saying that I must stay warm at all times, or I would risk gangrene and amputations. If I was smoking or drinking, I'm sure I would have gotten a far worse version of that lecture!


    However, in my experience, knowledge about smoking's harm doesn't do the smoker any good so far as quitting is concerned. After all, any good smoker is going to find that sort of news alarming, and then need to immediately calm their nerves, in the only fashion they really relate to at the moment, which is....to light up another one.  Same with drinking or any other addiction.


    I watched my mother have an entire lung removed due to cancer. She merrily continued smoking anyway, to calm herself down from the fright of cancer, of course. And so did I.  Obviously, none of us need a medical degree in order to read the Surgeon General's warning on each pack.  Take that warning, multiply it times 10 or 100, and you have the effect it can have on scleroderma, reading, fatal and often entirely unnecessary complications.


    That said, please do NOT expect that feedback to have any effect whatsoever on your desire or plans to quit.


    Quitting is usually successful if it is a positive decision, backed with positive intent, and a can-do attitude. Maybe some people could do it while wallowing in fear, but I found it impossible. I have yet to encounter a medical reason that I could/would emotionally respond to enough to have gotten me to quit. I'm sure a reasonable person could, but by definition, a reasonable person is not addicted to and still using their substance of choice.


    I think for a very long time, I wanted to think that I was trying to quit, but I wasn't willing to pay the price of actually quitting. I wanted the best of both worlds, for me and others to THINK that I was quitting, but to still fiercely hang onto the habit, and sooner or later (usually, sooner!) have another puff.


    That portion of my life was absolutely agony, in retrospect.  But it was what I had to go through to get to the other side, and I learned an awful lot about myself, and addiction, in the process. I'm just overwhelmingly relieved to be on the other side of that, and to no longer be a little puppet being dangled by the Nicotine Monster anymore. I'm FREE!!!  And I think only a former smoker, who was really good and dedicated to it, can understand how joyful it is to be free of the constant urges, desires, and feeling of not being in control.


    Maybe some day you can be free, too. But please don't expect mere input on the health dangers to be a key to any of it. If anything, those can be a reason to maintain the habit, in order to quell the associated anxiety that information can induce.



  10. Hi Dimarzio,


    Oh. my nicotine addiction also caused me to fall for the old "boredom" line. For decades, I'm ashamed to say.


    I know it sounds completely ridiculous to never-smokers, but I honestly had a terrible time just sitting idly, before I finally succeeded at quitting. 


    However, it was lots easier for me to figure out ways to defeat the boredom aspect, once I realized it was only my addiction speaking, and that smoking simply does not solve a boredom problem. Here's a site that explains it well:  Myth: Smoking Relieves Boredom.


    We have quite a Sclero Happy Dance thread starting here. I know you're not ready to make the leap for yourself yet, which is fine, but it'd be great for you to join in on the Happy Dance that I just started for Quiltfairy.  Who knows, with any luck, maybe someday we'll be able to throw one for you!



  11. Hi Quiltfairy,


    Major congratulations to you on your success in breathing pure fresh air, finding the positives in the situation, and making hay with new sewing equipment and such. I think that is simply marvelous, all the way around. You have turned it into a totally win/win/win situation!


    I think this is worthy of a great big Sclero Happy Dance!


    :happy-dance-line::jump-for-joy::happy-dance-line:  :hug-bear::happy-dance-line:

  12. Hi Dimarzio,


    If you are worried that your faintness could be pulmonary hypertension, you could ask to be evaluated for it.


    As it happens, I've had faintness for decades, due to orthostatic hypotension, which basically means that when I stand up, my blood pressure goes down (instead of up).  I'm also winded extremely easily and need to approach everything very slowly, but I do not have pulmonary hypertension.


    Fatigue is just part and parcel of scleroderma and many other autoimmune diseases. Unfortunately, the fatigue can also cause worry (like, to try to figure out what is causing it, or lamenting what we cannot do because of it) and then the anxiety can cause worsened fatigue!  It's quite a horrible catch-22, and one that all of us are vulnerable to. See Scleroderma Fatigue, which includes a video by Amanda Thorpe.


    Perhaps its possible -- and bear in mind that I am not a doctor and have no medical training at all! -- but I don't know anyone with pulmonary hypertension who could walk for an hour or two, with no problems. It is often hard to even pass a six-minute walking test with PAH. I should note here that the six minute walk test is a bit dicey with scleroderma, because we can flunk it without having PAH due to other systemic effects of scleroderma.


    What is absolutely fantastic is that you are actively researching your illness and learning everything you can about it!  The downside of that is that we can scare ourselves witless in the process, so I find it helpful to pursue ways to relax and deal with anxiety as being just as important as learning about scleroderma and its symptoms. Especially because our anxiety can worsen the disease process.


    Knowledge is power, but power can be used for good or evil. It's evil when it's worsening how we feel. It's great when its giving us reassurance (eventually) and confidence in our ability to work with our medical team, and our support system, to deal with this the best that we can.


    In the beginning, that can mean reading and freaking out, then seeking support and input, and calming down. Later on, we tend to skip over the freaking out portion faster and easier, especially as we gradually transition to focusing more on the happy and fun and even silly parts of our life.



  13. Hi Dimarzio,


    That's an excellent question. Unfortunately, not even the Chinese have discovered a cure for scleroderma.  We keep close tabs on that, as we have an international medical advisory board, and our site has even been translated into Chinese.


    In fact, we track a lot more things than only Chinese medicine.  See our Forum Guidelines for a list of all sorts of herbs, vitamins and remedies that may or may not be helpful for scleroderma (and thus may or may not be discussed in the forums, to prevent an onslaught of fake cure salespersons).


    In addition, we track Supplements for Scleroderma, as well as Diets and Scleroderma on our main site. You can also find specific diet tips on the appropriate symptom page(s) of our site, such as, foods or beverages to avoid if you have Raynaud's, or Heartburn.



  14. Hi Dimarzio,


    It's up to your scleroderma expert to figure out whether you have limited or diffuse, but it seems to be very common for people with systemic sclerosis to not know exactly which subtype they have. If I recall correctly, a survey in the UK showed that about half of systemic patients had not been told whether they had limited or diffuse.


    The thing is, both limited and diffuse can affect any of the internal organs. So the primary difference in categorizing is that limited means that the skin involvement is more limited, in that it is confined to the hands, feet and/or face.  Whereas diffuse can cause skin tightening even above the elbows and knees and on the trunk, etc.


    The worst form of scleroderma is a very rapidly progressing diffuse scleroderma. Within weeks, it can cause widespread skin tightening. Generally speaking, they figure the skin involvement can sometimes be reflective of the damage to internal organs. But there are exceptions to every rule, and some people can have primarily skin tightening, and others can have a lot of internal organ involvement but little or no skin involvement.


    Basically, if you are still alive a few months after onset, and your skin isn't tightened from head to toe, then you do not have the absolute worst kind of scleroderma. It is entirely "normal" for systemic scleroderma, of either type, to affect the entire gastrointestinal tract, from stem to stern.


    It's also normal for things to be worse during the onset stage, like the first year or two. I definitely know how it's rather alarming to get new symptoms every whipstitch!  But then things often settle down, even on their own accord, and usually resemble more of a chronic illness than a rapidly progressive, downward spiral illness.  Most of us will sprout our most prominent symptoms in the first few years, and then be left to deal with the fallout on an ongoing basis.


    For more information on this topic, we have lots of educational videos, especially about the Types of Scleroderma.  But no matter what I say about what type and what classification, it's up to your scleroderma expert to define what type you have. Don't be surprised if they sit on the fence about that for a few years, waiting to see how things develop.


    On the positive side, the normal course of scleroderma is for it to wax and wane. That means, when we are in a spell of worsening, we can be hopeful because, with proper care (which can even include rest and relaxation), it is likely that we will have a spell of improvement, right around the next bend! 



  15. Hi Dimarzio,


    For arthritis, as you might have figured out by now, they recommend not staying too long in any one position. Frequent gentle movement is a good idea to not stiffen up. For example, doing stretches or walking around during commercials.


    I'm able to swim just fine, in warmer pools. Many neighborhoods have warm pools, and even warm pool exercise classes, specifically for people with arthritis. The gentle exercise in water is absolutely superb for tender joints and muscles. In fact, the only time I can say that I'm entirely pain free is when I am floating in a warm pool.  I love to just float, even to the point where I've fallen asleep!


    Even if you can't find a warm pool or it doesn't trip your trigger, try just imagining that you are floating in a warm pool, and feel the relaxation seep through your bones and muscles. Ah, delightful!



  16. Hi Dimarzio,


    Here is a link to WhyQuit which covers the topic of smoking cessation forums, and will help you find the level of information and support that you need/want for quitting smoking. For the majority of us, it is really not a do-it-yourself job.


    I quit unsuccessfully over 200 times, with patches and programs and iron resolve. I threw out packs and cartons. I made lists of reasons to quit. I quit for a few days or weeks or months at a time. But I did not succeed until I understood the one big addicting lie that I was telling myself.  I kept on thinking, oh, just one puff!  Just one puff will put me out of my misery. I won't start again, I will just have one puff. I won't smoke the whole cigarette, I'll just have one puff 


    I imagine that might be the lie that supports nearly any addiction...."Just one!" How could "just one" possibly hurt me? Just a LITTLE BIT?


    It's the sheer tomfoolery of imagining that we have any control at all over any addictive behavior. We do not. We never will. Some of us are simply addicted, to whatever, and the sure-fire sign of it is when we begin telling ourselves we'll only have one...one puff, one cigarette, one sip, one drink, one pill, one game of chance, one of whatever we know we no longer have control over.


    Once I got it through my thick skull that "just one puff" was what brought me back into my nicotine addiction every time, or the very lame excuse of "stress" which is a self-devised thinking strategy for continuing to enable our own bad habits, then I finally got it.


    I simply accepted that I was powerless over nicotine, and that I always would be. I love it. It's my best friend! It smells great. It's a refreshing habit. It calms me down. It's there 24 hours a day. It's so cheap compared to other bad habits. It's fun to blow smoke rings! It's the perfect start and finish to a perfect day. Health, ah bah humbug, I'm already sicker than a dog, what difference can it make? In fact, it can help me cope with the stress of being sick!


    Today, I still believe all that. I still love the smell of smoke. I didn't mind the damage it caused me in the least. I still think of it as being my former best friend. I don't mind any of the time and energy I devoted to it. I actually remember it quite fondly, and never fight against those fond memories, either. It's just that it hardly ever even crosses my mind anymore, not even when I am around other smokers. And I can smile when I think of it, but have no urge at all to go back to being imprisoned by its constant lure.


    Because I realized that I would always be a sucker for the "just one puff" lure of addiction. I did not quit smoking. The only thing I ever did was delay that "next puff". I will always be a smoker, in my heart, and if I were to start up again, I am sure I'd be quite a chimney!


    Once things clicked for me, I quit trying to find a reason and I quit trying to find excuses. I promised myself that if I didn't have a single puff for three weeks, then I would adopt a cat from a kill shelter. Then every time I thought of having a puff, I thought how awful it would be that an innocent cat would have to die just because I was so selfish and had to have a puff!


    Anyway, you'll get a zillion ideas at the WhyQuit site. Find the proper venue for your goals and wishes and dreams regarding nicotine, or a life of breathing freely and, eventually, without a care in the world for that "next puff". IF that's what you really want.



  17. Hi Tanya,


    Welcome to Sclero Forums!  I'm sorry you have scleroderma and send my best wishes to you.


    As it happens, the butterfly rash isn't a symptom of scleroderma, it more often goes along with lupus. Lupus and scleroderma are very similar illnesses. They can easily be misdiagnosed, and they also can occur together, as well, sometimes as part of Mixed Connective Tissue Disease.


    Some people have success in covering up red face rashes with very thick corrective cosmetics, such as Dermablend. Corrective cosmetics can include green concealers as well. The green tint cancels out the redness, resulting in normal color.  The thing is, normal cosmetics or light foundations simply don't provide enough coverage.


    I'm delighted that you'll be seeing an expert. I'm sure they will be able to provide more guidance on your diagnosis and treatment.



  18. Hi EML422,


    Welcome to Sclero Forums.


    I'm sorry you have antibodies, but just in general, antibodies are typically only worrisome if/when they are accompanied by certain symptoms.


    We have many threads on this general topic of antibodies without symptoms, so while you are waiting for other responses, I'd suggest searching through our forums on this general topic.



  19. Hi Madi,


    Welcome to Sclero Forums. Like Jo said, scleroderma is an illness that requires certain symptoms for a diagnosis. It cannot be diagnosed based on blood tests alone. Since you are symptom-free at the present time, I don't see anything to worry about.  It would be normal for your doctor(s) to monitor you annually (or whatever), just to be on the safe side.


    That said, they recommend that anyone who may be at risk of someday getting any serious disease (which is most of us, really!) might be wise to acquire life insurance or disability insurance (etc.) -- just to be on the safe side, especially if they have dependents to provide for. Plus, insurance is incredibly cheaper when we are young and healthy, so it is a win-win!


    So if I were you, I'd focus on getting good insurance, and regular (but not excessive) health monitoring to catch anything early. Then I'd work really hard on putting the issue in perspective so that it didn't cause or exacerbate any anxiety, which can reduce our quality of life much more than scleroderma or other ailments.



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