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Shelley Ensz

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Posts posted by Shelley Ensz

  1. 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!

  2. 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:

  3. 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?

  4. 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.



  5. 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.



  6. 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?



  7. 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.



  8. 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.



  9. 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.



  10. 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.



  11. 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:

  12. 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.



  13. Hi Kimberly,


    People are certainly welcome to share their story in this thread.


    You may also want to read more posts throughout this forum, and also look at our incredible patient story collection, of over 1,000 patient and caregiver stories (in many languages) on our main site. Over 300 of these stories were included in our Voices of Scleroderma book series. And each of the stories are linked to relevant medical pages on our main site, so that people can see examples of what it is really like to live with an illness, or symptom.

  14. Hi StarStacee,


    Welcome to Sclero Forums. I'm sorry you have concerns about lupus or possible scleroderma.  As it happens, we are not doctors so we cannot diagnose anyone, of course. Anticentromere and Ro/SSA antibodies can occur in both lupus and scleroderma, and other autoimmune diseases, so they do not rule out lupus. Plaquenil is typically helpful for both lupus and scleroderma and other autoimmune diseases. If it's not helpful for you after a reasonable trial, then you should discuss possible discontinuation with your rheumatologist.


    If you doubt your diagnosis, then we always recommend getting a second opinion. Since you are not suffering any specific symptoms of scleroderma, such as tight skin or pulmonary fibrosis, then you may want to consult another lupus expert.  Try to find one with more education and experience than your current doctor, so that you can be more confident in their analysis.  You may also want to see our resources on Difficult Diagnosis.


    Good luck to you in getting it all sorted out!



  15. Hi Ron,


    What would really lift my spirits would be a nice long list of crazy things a person could do with a bedpan. I will donate the idea of decorating them with designer duct tape, perhaps the 70s peace sign version. And arranging an artistic display of them, perhaps spray painted and arranged like daisies, for a urology reception area.


    Luckily our sense of humor is infectious, and it's also the only organ that cannot be affected by scleroderma.

  16. Hi Quiltfairy,


    I'm very sorry your mom has been put into hospice, and send warm hugs to you and your whole family. 


    I know how very difficult it is to place do not resuscitate orders. The thing is, we have been so very misled by the media, into thinking that resuscitation is some sort of magic cure-all, whereas in reality there is an extremely low success rate in seniors, and usually people are only revived in order to experience much greater suffering, typically on a ventilator for the rest of their days; and in the end, we all lose the battle anyway. So it is a beautiful kindness to not force your mother to endure even more suffering. It is an extremely loving, albeit also extremely difficult, decision to make and to abide by, and to accept.


    May you and your family draw close and hold tight together, and use all the chances you have to let your mom know how much you love her.



  17. Hi Ron,


    I've had finger and toe ulcers, without having PAH, so although there is a correlation, and perhaps even a likelihood of PAH in your particular case, given so many other things, it is probably not an automatic shoe-in (which I mention for other people with digital ulcers who perhaps have a fresh worry over pulmonary hypertension).


    The right heart cath generally isn't as bad as advertised.  Between prep and recovery it can be just a few hours. It just sounds so much worse, and so much scarier, on paper than most people find it in real life.


    My late husband rated right heart caths as one of his favorites, among the invasive tests, and would even have his without sedation; but he was a crazy fool that way, he would also have his esophagus stretched without sedation and hop right back in the car to go to work again. He loved following the heart cath on the monitor, as its one of those things you can often watch (if you are game for that sort of gory stuff).  He also had very many bronchoscopies with biopsies, and he preferred heart caths over bronchs, so if you've ever had a bronch, you've probably already been through worse than the heart cath, and lived to tell about it.


    If you're not game for all the show-watching, which anxiety might just understandably toss out of the ball park for you long ahead of time, they do give the really good drugs for this one to really relax you. You will float off into a pleasant little cloud of relaxation, and should awake being able to throw on your street clothes and go home as soon as they give the all-clear.  You'll need to have a driver, and you will have some activity restrictions for the first day or two, so you can plan for an at-home movie fest or chug down a good summer book.


    If they are coming close to a PAH diagnosis, as I understand it, the right heart cath is really the only truly acceptable way to properly diagnose it, even though there is a constant push to use cheaper tests to diagnose it, they are simply not as accurate.  You might even mostly pass the other tests but flunk the right heart cath -- and vice versa.  You can look bad on the other tests, but be basically okay on the right heart cath.  And bear in mind, you can have plenty of stuff wrong, and have impaired breathing, without having full-scale, in-need-of-treatment PAH.


    You shouldn't be bed bound for more than an hour or so in recovery, provided everything goes fine, of course. Which it is very likely to, because you are conscientious, and conscientious people overall have better outcomes because they read the instructions and -- oh, dare I say! -- actually follow them.  It's normally the daredevils who mess up in aftercare by doing stupid stuff, and I just don't see you throwing caution to the wind, and getting drunk down at the local bowling alley and scratching your head over why your incision broke open and you don't feel so hot.


    So, if they eventually get around to doing the procedure, which would seem reasonable, you'll likely do great with it...or at least, a lot greater than the carefree ne'er-do-wells!



  18. Hi EGJason,


    It might be helpful if you could put line breaks in the blood tests, so we can sort out the ranges from the results. I'd like to try doing that myself, but might mess it up and change the meaning of the results that way.


    Basically, which of the blood tests are positive?  That would be a good starting point and we can provide you some info about the tests, provided we already have the overall understanding that the tests are not as important as the symptoms, and so on and so forth.



  19. Hi Margaret,


    I'm glad you are finally starting to get some real answers regarding Gareth's neck pain. I'm hoping that he won't need surgery, but physical therapy and such isn't any walk in the park, either.


    I like to plan something fun to do after every doctor's appointment, so I can look past the appointment, by looking forward to the fun. So what sort of fun does Gareth get after his MRI?  Like, does he get to pick the coffee shop to go to, or a special show to watch?  Yes, I do realize that with this plan, nearly every day would be Gareth Day...but I'm sure he won't object to the idea, will he?


    Keep us posted as things develop, of course.


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

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