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Shelley Ensz

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Posts posted by Shelley Ensz

  1. Hi Jon,


    Absolutely, the wrong use of this forum (or any support venue) is to fuel anxiety. Many of us need to learn how to deal with anxiety first, before we can get any real benefit from any illness support venue.  I was very upset after my first in-person scleroderma support group, where I sat next to someone who had already had multiple amputations and was about to have even more,


    I found her health situation very disturbing -- and even more so to imagine that I might be in her shoes some day!  But then after a few days, I thought, well, maybe I wouldn't meet quite the same fate, as I was not a smoker or heavy drinker, both habits she had that were probably greatly exacerbating her scleroderma.


    Her attitude was still merry, though.  She was going to go out gambling the day before her next partial leg amputation!  Again, not a habit I indulge in, but she was not letting a little thing like sequential amputations impair her zest for her sort of enjoyment of life. There was a kernel of a lesson in there for me, in that no matter what dire fate scleroderma might have in store for me, I could still pursue my hobbies and figure out a way to enjoy life to the very end, if I so decided.


    I realized that I had to change my attitude before going to another meeting. I needed to consider what I wanted from the meetings, and if they were only going to scare the socks off me, then I'd have to figure out another way to grow through this situation.


    It helped me a lot to simply accept that the illness was different for everyone, and to remember that I was seeking examples of how to live happily regardless of outside circumstances, since living unhappily was very easy to do, even in the very best of circumstances.


    But if I had remained upset over my first meeting, and not found the kernel of wisdom in it, I would not have gone back.  There is no sense in doing anything that is optional, that makes us feel worse!  So I 100% support your decision to chill on the forums for the time being.


    After all, we are here to try to improve the lives of people who are dealing with scleroderma or related illnesses, so we hope that is what every member is gaining from their participation.


    So, two thumbs up for you, and for your honesty.  I hope it is a comfort for you to realize that we are always here for you, if or when you ever need this particular type of support.



  2. Hi Ray,


    Welcome to Sclero Forums!  Royal Free is one of the very finest scleroderma centers in the entire world, so you will very likely receive outstanding care there. 


    For questions specific to the UK (just like this thread), this UK subforum is perfect. 


    For more general support and friendship, you may also post in our MAIN subforum, as well.



  3. Hi Miocean,


    I'm absolutely delighted to hear that you are on the upswing!  I also know that feeling of a switch being flipped. I have a hunch that it is because the inflamation has been quelled, for whatever reason.  It seems that whenever I'm feeling my worst, my inflammatory markers are also high.


    About 40 years ago, I had been very ill for over a year and then finally had a major surgery that resolved the situation.  Three weeks after that, when most people would still be moping about and complaining about how long and slow recovery was, I opened my door one morning and was overwhelmed with how crystal clear and beautiful the whole world looked.  I was flooded with a sense of wellbeing, and then with the dawning realization that I had not felt that healthy in many years.


    To think, that's how healthy people feel, all the time, without ever realizing how precious that feeling is!  I still cherish all the fleeting moments of energy, or a pain-free spell.  Maybe with chronic illness we learn to appreciate normal far more than any normal people do.


    I'm very glad that you got to experience another burst of feel-good, and I hope you have many more as you continue to recover from this round.



  4. Hi LuckyJon,


    It is much harder for most of us to deal with the unknown, than the known. You are not only dealing with chronic illness, but you also have absolutely no idea what to expect next. Whereas, a person with already differentiated and diagnosed illness has a little bit more certainty, or at least a bit more peace of mind in being able to put a name to it.  It may not give any more control, but it at least gives an illusion of more control.


    Most of us have a strong desire for a crystal ball. We want to know what to expect, so that we can know how to plan for it. It is perplexing to have an illness and not know whether you are going to last another year or many many more decades.  After all, it affects all your decisions.  If we had just one month left, for sure, it would simplifiy all sorts of decisions.  We could eat only dessert, as it wouldn't matter anyway.  We could spend all our money, just for the fun of it, even though spending would have probably lost its luster by then. We could get slobbery emotional with our friends and family. We could cancel our pending colonoscopy with glee and absolute abandon!


    All our decisions become easier because we can assess our priorities.  But with the unknown, such as UCTD, you really and truly have no idea whether or not you should continue investing in a 401K or pull it all out for a very nice world cruise while you can still walk and talk.


    That uncertainty can drive some or most of the anxiety. That's where taking a master class in dealing with anxiety and uncertainty can be so very helpful. Learning to deal with the unknown has been the project of the ages, of philosophers and religions alike. And until we figure out a way that works for us, most of us suffer quite a bit, and unnecessarily, when first faced with severe or chronic illness.


    But it doesn't have to be like that!  There are many tools and skills and attitudes to help us over that hump, and learn to accept things as they are, with plenty of joy and happiness for each day.  I hope you find a little dose of it today, with the idea that it is definitely possible to learn how to thrive emotionally, even when our health remains detrimental or mysterious.



  5. Hi Jon,


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


    As it happens, only 1/3 of people with UCTD ever go on to develop a more specific autoimmune disease, and only a slight portion of them develop systemic sclerosis. Perhaps the most challenging aspect of UCTD is learning how to live with the vast uncertainty, never being sure if or when the other shoe will drop.


    That's no easy task!  Most of us need to muster all the support and coping skills we can find to deal with any chronic disease successfully.  The general rule of thumb is that if we are still quite upset two weeks after anything major, including an illness diagnosis, we should talk to our doctor to see what can be done about our anxiety, because anxiety can worsen any ailment and cause many symptoms all on its own.  In fact, it can ruin quality of life and impair health habits, making any illness even worse.


    As I understand it, a huge thing with UCTD is to make sure that your Vitamin D levels are optimized, because the people with UCTD most at risk of progressing are those with low Vitamin D.  It is such an extremely easy thing to treat with sunshine and supplements, and so easy to track, that you could do yourself a major favor by staying on top of your D levels. It could be your new favorite good health habit!  There are even free programs that will help track your vitamin d needs and exposure depending on your longitude and latitude, etc.


    It's nice meeting you and we hope to hear from you again soon, hopefully with news that you are feeling a tad better now that you do not feel so much alone!



  6. Hi Tbhof,


    Systemic scleroderma is a clinical diagnosis, meaning that it is based upon symptoms and not upon bloodwork.  A person could have off-the-charts positive antibodies but without any telling symptoms, would not carry a diagnosis of scleroderma -- a suspicion of it possibly occurring at some point, of course, but that is very different than actual diagnosis.


    As well, a person can have entirely negative antibodies but still be diagnosed with scleroderma, based upon symptoms alone.


    Since your antibodies are "insignificant", or possibly even "negative", then the question reverts back to your present symptoms.


    Autoimmunity can come and go; it is not always a continually persistent thing. It's better to think of antibodies as a clue, one that sometimes (but not always) solves the mystery, but for some of us the clue that solves it, especially in the beginning, isn't the lab work, but rather other things, like unmistakable tight skin or lung fibrosis, combined with other symptoms.  See Difficult Diagnosis.

  7. Hi Kamlesh,


    It is always wonderful to hear from you, but I'm sorry it is because you are experiencing more complications from scleroderma.


    Please keep in touch and let us know as things develop.  Also, check out our new Skype Chat info, and perhaps sign up for an upcoming Skype chat!

  8. Hi Margaret,


    I'm thinking of you and Gareth, and hope that he is enjoying (as much as he can) these last few weeks before surgery.  I'm delighted you were able to go on vacation, how refreshing and distracting for everyone, prior to a big surgery!


    I'm sending more hugs for Gareth.


    :hug-bear: :hug-bear: :hug-bear:

  9. Hi Miocean,


    I am glad that you have most likely pinpointed the problem.  I'll keep my fingers and toes crossed in hopes that is exactly what it is!




    P.S. I told a fibber about crossing my toes. They are too short to cross!  And crossing my fingers makes it extremely hard to type. How about I just send a lot of good thoughts your way, will that suffice?

  10. Tbhof, if you think you may have Raynaud's, the thing to do is to go see your primary care doctor about it.  Raynaud's is very common so they are generally quite good at recognizing it, and sorting it out from other ailments.  And if they think you need vascular lab testing, you could get that done before you see the rheumatologist. 


    Any little thing that you can pin down BEFORE you see rheumatology is a good thing. Otherwise, with it not documented, they are more likely to readily dismiss your concerns if there is nothing specific to point to. It's very different to say, I think I might maybe have Raynaud's, versus, my primary care doctor thought I had Raynaud's and sent me for vascular lab testing, and here are the results of that test.


    It just completely removes it from the realm of speculation, for both you and the rheumatologist.



  11. Hi Tbhof,


    That's an interesting question.


    Mine go dead white all the way around, front and sides and back.  I've never even thought that it wouldn't occur that way, all the time, for everyone with (verified) Raynaud's.  So I'd be very curious to see what others have to say about it.



  12. Hi Mothergoose,


    Oh what fabulous good news it is that you got in to the Royal Free scleroderma clinic, and that your diagnosis is confirmed and you had such a thorough appointment.  I'm very happy for you!!!


    Isn't it amazing the difference that proper care can make?



  13. Hi Miocean,


    Oh my goodness.  I'm sorry to hear this. How are things working out?  Have you changed medications or have they found a good treatment yet?


    There's an interesting thing with those of us who have had severe g.i. problems. And that is, we know how to scope out every bathroom within a ten mile radius, and mentally score them by how well equipped they are. When things are acting up, we consider closeness to the restroom to be a prime consideration for our easy chair, the side of the bed we'll fight for, and the most ideal table in the restaurant. We can develop a hobby of mentally drawing the figures that we see in the tile at our feet as we get to stare at it so glumly, for so long. The only sales we care about anymore are those for toilet paper. At gift-giving time, we hope someone will meet our deepest secret craving, which is for a soft cushioned toilet seat.


    I hope things are a bit better for you today. Please keep us posted on your progress.



  14. Hi Tbhof,


    I may be wrong, I often am, and I am not a doctor and have no medical training at all.  As it happens, I've never heard of either localized or systemic scleroderma causing brown patches on the palms of both hands at once.  It's not that it couldn't happen, of course, just that I don't remember tripping across that particular description before, especially as an initial symptom.


    However, there are other much more common things that could cause brown patches on both palms, such as some vitamin deficiencies, liver problems, palmar fasciitis, sun exposure (particularly in people with darker skin tones to begin with), fungal infections, and so forth. So I really hope your primary care doctor has thoroughly ruled all those items out already, And if your palmar lesions turn out to be caused by some form of scleroderma, it will certainly be very good for us to know about it.


    Keep in mind that it's possible to have two different conditions at once, such as a palmar fungal infection plus morphea in other places. And who knows, they might all be liver spots (natural aging of skin).  Try your best to hang onto comforting thoughts or possibilities while you are waiting.  While waiting for doctor appointments or test results, I try to tell myself that it is "all good news".  For example, if you have scleroderma, that's great, at least you got diagnosed and now you can deal with it.  If you don't have scleroderma, that's great, you can deal with whatever it is.  So you see, it is all good news because finding out whatever it is, is a giant leap forward from where you are right now.


    Really, the biggest challenge in any symptom or illness is in how we figure out how to cope with it emotionally, because how we talk to ourselves directly affects our emotions, and our emotions directly affect our happiness...or anxiety, as the case may be. So I find it helpful to use my bad memory to forget how I'm feeling, and to start giving myself more positive input.  Eventually, my negative emotions just throw up their hands and accept defeat, letting me lapse into happiness.


    No matter what ailment you have, you deserve to be happy and you deserve to be happy today. There is no illness worth sacrificing our peace of mind or joy of life, except for the few moments it takes to study the situation, and reframe it.


    Jolly lofty words of exhortation, eh?  Yes, I also wish I could live up to them and follow them more of the time, so don't be discouraged if the road seems bumpy for you. You'll make it and you'll be a stronger and better person for having struggled with the threatening unknown for a bit, and then you'll be able to provide comfort and guidance to others who follow in your merry and inspiring footsteps.



  15. Hi Tbhof,


    Yes, systemic scleroderma causes thickened, hardened, or tight skin in the affected areas but it does *not* cause discolored skin and it does not cause discolored skin in patches. Systemic also affects matching sides of the body at once, whereas morphea appears in patches anywhere.


    In morphea the patches are typically oval and usually reddish or brownish, normally with a lighter colored center.  Systemic sclerosis does *not* have such color changes plus it typically begins in the fingers or toes and moves upward from there, on both sides.


    Therefore morphea is not ever a symptom of systemic scleroderma, and only very rarely do both morphea and systemic occur together in the same person. Many people think that morphea must be a precursor to systemic but that is absolutely not true. There is no such thing as a natural progression from morphea to systemic.  The people who are at risk of acquiring both morphea and systemic have the anticentromere antibody, but that is merely a risk factor and not a guarantee of any sort.  See the resources on our main site for Morphea.


    About 25% of people with morphea also have one or two other symptoms beside just skin involvement, but they have a perfectly normal life expectancy. If at any point you develop symptoms of systemic, such as the aforementioned type of tight skin or pulmonary fibrosis, then you are fairly likely to find you also have the anticentromere antibody. However, Amanda is a serious exception to that as well, having both morphea and systemic but no antibodies at all, until very recently.


    Most unfortunately, many of us find that our bodies have failed to read the medical textbooks <sigh> but overall, there's a huge difference between localized and systemic scleroderma which I hope you find comforting and reassuring, as you learn more about the differences.



  16. Hi Tbhof,


    Yes, that is Amanda in our fabulous Scleroderma Video Series.  Tight skin occurs in stages, and the tightening can also go into remission, or even revert, at any stage.  The usual stages are swelling, thickening, and tightening. The last stage can contract the affected joints, causing them to permanently curl inward.


    This is *not* the same as morphea scleroderma, which occurs in patches of generally oval discolored skin.  There is no color change to systemic scleroderma, where the skin involvement most commonly begins in the tips of fingers on both hands, and spreads upward.


    Having a patch of morphea is *never* a symptom of systemic scleroderma, and morphea does not "progress" or "turn into" systemic scleroderma. Morphea is occasionally accompanied by one or two other symptoms, but the presence of those symptoms again does not indicate that systemic sclerosis is developing. People with morphea who are most at risk of also getting systemic are those who have the anticentromere antibody, and even then, it is only a risk factor but not a guarantee.


    The statistical odds are actually 96% to 100% that a person with morphea would NOT ever get systemic, and although this is very low, it is still a bit higher risk than that of a normal, healthy person. Morphea does not lower a person's life expectancy in any way.  Many people have just one or two small patches that do not go deep and do not occur over joints. It will often fade or go away even without treatment after about three to five years. 


    However, some cases of morphea are more aggressive, and the best approach is to stop the spread of morphea, particularly in more difficult cases. Here, UVA1 Phototherapy is now considered to be the first line treatment.  It is simple enough, like indoor tanning -- no shots or pills required!  Patients are regularly monitored for skin cancer, as they should be with any significant UV/sun exposure, and the main side effect is skin tanning.



  17. Hi Margaret,


    I'm terribly sorry that Gareth needs to have neck surgery.  I sure hope that it will fix things, and reduce his pain level.


    It is absolutely delightful that you all get to go on vacation first!  I'm sure you'll have a terrific time, and cherish every moment not being spent in doctor's waiting rooms!


    Please give Gareth an extra hug, just from me.


    :hug-bear: :hug-bear:

  18. Hi Tbhof,


    Welcome to Sclero Forums. I'm sorry you think you may have Morphea and send my best wishes to you.


    There are several important things to keep in mind. One is, your spots might not be morphea. They could be many other things, including psoriasis, dermatitis or other things. I have systemic scleroderma, and when I developed a discolored patch, my doctor assumed it was morphea, even though it is very rare to have both morphea and systemic together.


    Eventually I had the plaque biopsied, and it turned out to be deposits as the side effect of medication. I had been on two medications that can cause such spots, both plaquenil and minocycline (an antibiotic), so my plaques are completely harmless and no treatment is necessary for them.


    I know this sounds horribly trite and may not be helpful at all.  But when I encounter worrisome things, I find any helpful phrase that may help reduce my anxiety and just repeat it to myself each time the worry pops up.  Things like, "It is what it is." Or, "Don't trouble trouble until trouble troubles you."  I even poke fun at myself with things like, "My favorite exercise is jumping....to conclusions!"


    Morphea comes along with a perfectly normal life expectancy. It does *not* automatically progress to systemic scleroderma and in fact, the overlap is very rare, anywhere from zero to 4 percent of people with morphea also get systemic. Those most at risk have the anticentromere antibody (and even that is not a guarantee, just a risk factor).  It is entirely normal for people with morphea to have one or two symptoms outside of the skin plaques, such as heartburn.  Heartburn is also extremely common in the general population of entirely healthy people, and it is very easily treated, so it is  nothing dire and most of us find it to be very easily managed once we know we have it and observe what makes it worse and what relieves it.


    Please keep in touch, and let us know how things go with your rheumatology appointment. We care, and hope that you are feeling better, and more comforted, soon.