Shelley Ensz

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Posts posted by Shelley Ensz


  1. 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:

     

    :hug-group:


  2. 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.

     

    :hug-group:


  3. 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!

     

    :hug-group:


  4. 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:


  5. 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.

     

    :hug-group:


  6. 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.

     

    :hug-group:


  7. 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! 

     

    :hug-group:


  8. 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!

     

    :hug-group:


  9. 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.

     

    :hug-group:


  10. 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.

     

    :hug-group:


  11. 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.

     

    :hug-group:


  12. 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.

     

    :hug-group:


  13. Hi Dimarzio,

     

    As it happens, either cold or hot water can set off attacks of Raynaud's.  So, when it's an option, try for warm water (even in bathing). And then buy a big supply of packaged hand wipes, and keep them handy in the car, pockets, purses, bathroom...everywhere.

     

    It is always worthwhile to avoid an attack of Raynaud's. See Raynaud's Prevention for more tips!

     

    I don't have any particular experience with that blood pressure medication.

     

    :hug-group:


  14. Hello Aodom,

     

    Welcome to Sclero Forums. Here is a recent research article that includes U3 RNP that you may find helpful, Autoantibodies in Systemic Sclerosis: Unanswered Questions.

     

    Basically, as Jo mentioned, the autoantibodies mean very little all by themselves. What really matters, a lot, is the reason(s) why your doctor ran the test in the first place. Meaning, your symptom(s) are generally far more important than the antibodies. So while you are waiting for more information on your test results, it may be a good time to look into the symptoms of systemic sclerosis, and see whether any of them apply to you right now.

     

    For starters, you may want to view our Diagnosis of Scleroderma resources, as well as What is Scleroderma? which explains the various types that can occur.

     

    :hug-group:


  15. Hi Itchy,

     

    Welcome to Sclero Forums!  I'm sorry that you have UCTD and now issues with itching. Many things can cause itching besides, or along with, scleroderma, of course -- including Sjogren's, which can cause severe skin dryness, too.

     

    With my particular scleroderma skin involvement, during the fibrosis stage(s), I experience swelling, itching, burning, plus tingling and other odd pain which feels like my skin is tightening, which it literally is, of course. I'm sure probably everyone is different, but I don't get lucky enough to have *only* itching, even though the itching can be enough to drive me up the wall during an acute phase.

     

    Because itching can be caused by so many things, I strongly recommend that you see your doctor, and perhaps a dermatologist as well.

     

    I also get very dry skin which can cause itching all by itself and is not part of an inflammatory process. For that, I have found relief with several different things. My favorite one is slathering on coconut oil and then taking a lukewarm shower -- with no soap -- and then blotting dry afterwards, and putting on more coconut oil.

     

    If you try this out, and think it over, and really feel that it is likely following the pattern of scleroderma, then I suggest you consult a listed scleroderma expert for evaluation.

     

    Using pure oils (of nearly any sort you like) is good for some of us, because it bypasses a lot of other ingredients that could cause dryness or allergies. Oh, and Bag Balm is good, but it is very thick, so I have only used it at night and then covered up (with gauze or clothing) to avoid staining furniture and bedding.

     

    You can also take a delightful baby oil bath, as mentioned on our Xerosis (Dry Skin) page. It works best when you also play classical music and take it by candlelight -- because that helps reduce the tension caused by that incessant desire to itch!

     

    Another trick I've used is to put a cold pack on my neck. It doesn't stop the itching or relieve the dryness (the other steps are still necessary, especially seeing your doctor), but what is does is interrupt the pain signal so you focus more on the thought of how cold your neck is, and breaks or relieves the mental obsession for a bit.  ANY healthy distraction is good!

     

    But, that's also why itching can be more prominent right at bedtime, because there is often little else to think of so it gets the chance to command center-stage. If we let it!

     

    :hug-group:


  16. Hi Logan,

     

    Well, partly it would depend on if your mother is actually diagnosed with scleroderma, since there are many ailments that can affect the stomach. I'm not sure what the statistical odds might be in any given family.

     

    I'm not aware of any particular clusters that have been identified in the UK, however some cases are known to be caused by genetics and by environmental exposures.  See Causes of Scleroderma.

     

    I have had several in-laws who also have scleroderma, but in different sides of the family and different parts of the country. So sometimes I think it just boils down to chance.

     

    I'm sorry that you've had any of it in your family, though, and I hope that there is something that will make your mother's stomach a bit better. Please keep in touch.

     

    :hug-group:


  17. Hi Dimarzio,

     

    As it happens, scleroderma isn't known for causing the all-over aching that you are describing. Generally that is due to things like depression and/or fibromyalgia. You can ask your doctor to do a fibromyalgia tender point exam (it is very fast and easy) to check that out.

     

    We can't really get into a lot of discussion about sleep medications here, because of our guidelines about drug-seekers on internet forums in general. However, I strongly recommend that you ask your doctor about the possibility of having sleep disorders testing done.  There are many different types of sleep problems, and you might, for example, be trying to treat a sleep apnea problem with medications, which simply doesn't work. Plus, sleep problems are common in the general population but in scleroderma, as well.

     

    :hug-group:


  18. Hi Maamen,

     

    Welcome to Sclero Forums. I'm sorry your wife has scleroderma and send my best wishes to both of you. In order for her to get appropriate care and possible clinical trials, you would want to have her consult a listed scleroderma expert.

     

    We have a huge sections on our main site for Scleroderma Treatments and Clinical Trials.  In addition, we have over 1,000 patient and caregiver stories (organized by type and by symptoms) from around the world which reveal the tremendous variety of symptoms and progression that can occur.

     

    Most treatments depend on individual symptoms that someone is encountering. So you may also want to look up your wife's individual scleroderma symptoms, where we provide the very latest research plus handy tips for dealing with each one, as well as many scleroderma videos.

     

    The best research you could possibly do for her would be to get her to a real expert in this disease, because it is so rare, and unique in its presentation, and treatment.

     

    :hug-group:


  19. Hi Dimarzio,

     

    Welcome to Sclero Forums. I'm glad you found us!

     

    As for what's normal with scleroderma, the only thing normal about it is that takes a different course and timeline for everyone. It also typically waxes and wanes on its own accord, even without treatment, which means that it may get worse and then for no discernable reason, get better. And so on and so forth.

     

    We have over 1,000 patient stories on our main site (and in our Voices of Scleroderma book series, which is based on them), and I have yet to find any two stories that appear to match. The most helpful thing of all, that most of us will tell you, is to be sure to consult a listed scleroderma expert so that you receive the best care possible. And to seek quality support -- such as our fabulous Sclero Forums!

     

    :hug-group:


  20. Hi Enikail,

     

    I'm sorry that you are so upset, but I'm glad you found our forum so you can get some answers that will hopefully help calm you down.  Just please keep in mind that severe emotional stress can be a medical emergency, and call locally for help if you need it, such as your doctor or even any emergency line.

     

    The problem might be that in a distressed state, it is very hard to do significant, clear-eyed internet research. When we are upset, we are naturally inclined to absorb only the worst possible information, or even total disinformation.

     

    As it happens, SCL-70 is positive in around 25% of lupus patients.  Lupus and scleroderma can both be rather mild or very serious, so I'm not sure why you would particularly prefer lupus, or why it would be more comforting to you, but perhaps that is because lupus is a more familiar term than scleroderma and you may be familiar with famous people who are living successfully with it.

     

    The general rule of thumb they have is that if we feel emotionally disturbed for two weeks after a major stressor (or severely distressed over anything), we should see our doctor to see what can be done. Sometimes all we need is a bit of reassurance, other times we may need medication and/or counseling to help us make a healthy adjustment with whatever challenge we are facing.

     

    Please keep in touch and let us know how you are doing. And of course, be aware that none of us are psychologists or medical professionals, so we can't take you by the hand and steer you to the safe zone. That is why having local professionals (doctors, counselors) to help is downright necessary for most of us when first confronted with serious illness issues.

     

    I'm sending lots of warm hugs your way!

     

    :hug-group:


  21. Hi Amanda,

     

    That's fascinating that your identical twin sister has follicular lupus, and you have systemic sclerosis. I think it makes a fair amount of sense, because you are both probably genetically predisposed to getting some sort of autoimmune disease on a basic level, and by a roll of the dice, the inflammation affected you each in different ways. (See Causes of Scleroderma: DNA, Genetics, Race)

     

    Take a gander at our Scleroderma Registry section, and see if there's an appropriate place to donate some of your DNA. You'll see there is an Twins with Autoimmune registry in the U.S., but I don't know if there is one just like that in the UK, or not.

     

    :hug-group: