Jump to content
Sclero Forums

Shelley Ensz

  • Content Count

  • Joined

  • Last visited

Posts posted by Shelley Ensz

  1. Hi Amanda,


    Wow, you are being put through the mill!  I'm sorry you have so many complications, and all at once, no less.


    I don't know the answer to most of your questions. PH can be very hard to diagnose. And it can be misleading, because some tests can appear to indicate PH, others can appear to be perfectly normal, but only the right heart cath can sort everything out properly. And, that is quite a procedure to undergo. When is your next cardiology appointment?


    Be sure to read up on Nissen fundoplication before you visit gastroenterology, in case they suggest that surgery to fix it.


    For hydroxychloroquine, my rheumatologist had me take my entire dose at bedtime, so that I would sleep through any side effects. That worked like a charm and I never had had any bothersome side effects, except for the good ones like a very noticeable and welcome reduction in pain and fatigue, and fewer flares of all sorts of things.


    Keep us posted as things develop. It's certainly going to be a cute balancing act to manage all of this at once!



  2. Hi Miocean,


    Oh my goodness. I hope you are able to fly on vacation. But if it is not cleared up in time, it is better to recover at home than to be in dire straits in the air or in another country. Perhaps you could develop a Plan B for vacationing at or near home, one that you could always revert to, if needed.


    I try to always think in terms of alternate plans and keep on adjusting them until they fit my capabilities that day. I know you are great at that, too!  What could you do at home that could be really fun and manageable for both of you?  Game nights together or with friends, a painting spree, museum visits, plays, local sightseeing, or even just a great vacation book? 


    I'm sending lots of good wishes your way in hopes that you mend enough in order to be able to safely travel. 



  3. Hi Jpgoogs,


    If your doctor has prescribed Gleevec for something other than scleroderma (such as leukemia or gastrointestinal tumors), be sure to discuss any plans you may have regarding pregnancy. 


    If they were recommending it for scleroderma, then you might want to get a second opinion, preferably with a listed scleroderma expert, which we strongly recommend.


    Please keep in touch and let us know how things are going for you.



  4. Hi Smileforyou,


    Welcome to Sclero Forums.  I'm sorry you have Sjogren's and send my best wishes to you.  As it happens, Sjogren's is the third most common rheumatic disease, so it is often encountered and treated by the usual rheumatologists.


    If you are developing more difficult or complex symptoms of Sjogren's, then it may be most helpful to go to the largest medical university center in your area (the hospitals where they train doctors).  Such centers are likely to see more patients, and more patients with complex conditions as well.


    Another tip is to see a listed scleroderma expert, because they are also rheumatologists, and because Sjogren's frequently occurs along with scleroderma, so they are more likely to be well versed in it than the "average" rheumatologist.


    I'd like to point out that we serve those with scleroderma and related illnesses or symptoms, worldwide -- including Sjogren's. So we are a great support resource for you for the long term.



  5. Hi Quiltfairy,


    I have decided to ask Jo to please post your quote, "I have decided to enjoy what life I can as long as I can and to not spend time worrying about what is going to happen next" for an upcoming forums banner, as that is a great idea for all of us.


    Probably the biggest effect that scleroderma has had on me is that it has made me more grateful for the gift of life. I take fewer things for granted and I make a much more concerted effort to really and truly enjoy every possible minute.


    For me, a focus on fun and laughter is not optional anymore, but absolutely essential. It defuses the stresses that are so inherent in illness before they have much of a chance to build up. So I have gradually become far more serious about having fun. LOL.



  6. Hi Danieck,


    Welcome to Sclero Forums.  I'm sorry you have concerns about possible scleroderma, and send my best wishes to you, and your family.


    As for your next step, my guess is that you've probably already figured that out.  It's to do everything in your power to reduce your stress levels because stress will make all your symptoms worse, trash your sleep and make it difficult to find and appreciate the thousand daily joys of living with your husband and daughter.


    Cope with the stress in every positive way you can think of.  I don't know if that means declaring a movie marathon, leaning very heavily on any faith you have, reading everything there is about scleroderma or even tuning it out entirely.  The basic problems we face when the issue of serious illness first arises in our life, is fear of the unknown and fear of death. On some level you have faced those same issues your entire life and you have always bounced back.  It's likely just more severe and in your face right now.  Try to think of those times when you've been frightened and recall how you overcame it.


    Basically, very few things in life are ever as bad as the horrors our imagination can conjure.  Odds are that even if you have scleroderma, it is likely very mild and taking a very gentle course. What you've coped with the past two or three years is very likely what you'll be coping with the next two or three years as well, and long into the future.


    You seem to be living fairly well with your existing symptoms. Scleroderma is well known for waxing and waning, even without any treatment at all.  It is totally fantastic that you already gave up smoking, that is an ace in your corner!  Take the time right now to pat yourself on the back for that, because if you hadn't already done that, it would be what we'd all be hollering about as the best way to improve your health going forward.


    But you already have great health habits and a delightful family and a great doctor.  Your next step after this will probably be to see a listed scleroderma expert, as the odds of your local rheumatologist knowing anything at all about scleroderma are very slim.


    Take a deep breath. Count to ten. You and your family are all going to be much more okay than you think you are at the moment. And we will be here for you.



  7. Hi Jasmin,


    Welcome to Sclero Forums!  I'm sorry you have morphea.  It is nothing to simply suffer from though, as it is a form of localized (not systemic) scleroderma that has proven treatments.  Most especially, UVA1 phototherapy, which is very simiilar to a tanning booth.  With morphea, it is always easier to control progression than to clear up any existing damage.


    Like Jo, I would urge you to seek treatment with a scleroderma expert that treats localized scleroderma, or at any dermatology center that has UVA1 equipment.  (UVB is more common but a bit less effective for morphea.)  Proper care now is very important and nothing to be postponed.



  8. Hi Jazi,


    Welcome to Sclero Forums.  I'm sorry you have scleroderma with gastrointestinal involvement.  I'm not sure its much of a comfort to say that's there's no predictable pattern with the development of scleroderma symptoms.  It's sort of a catch-22, that most of us have no idea what to expect next. 


    Another confounding thing is that the natural course of scleroderma is to wax and wane.  That is, it gets worse -- and then better, even without any treatment at all!  That aspect is so strange that it makes discovering treatments very difficult. Researchers are just positive they've found a useful treatment, only to find out way down the line that it was only the natural course of scleroderma they were witnessing, and not the result of their grand treatment.


    Therefore, one of the biggest challenges of scleroderma is to wrap our head around the idea that things could take a turn fo the worse any day...or, they might linger or even improve over the next forty or fifty years.  Should we worry?  What should we worry about?  Should we not worry at all, and throw all caution to the wind?


    What I've found is that worry doesn't help any of us at all. Neither does tuning it all out and throwing all caution to the wind. But, educating ourselves on the illness, becoming aware of potential pitfalls but not agonizing over the prospect, and developing sturdy attitudes that can see us through thick or thin can be very helpful indeed!



  9. Jo Frowde became an ISN Hotline Support Specialist, where she will be answering inquiries and emails on the hotline. Jo is also an ISN Assistant Webmaster, ISN News Manager, Manager of Sclero Forums and a Sclero Forums Chat Host. Posted 11/05/2015. (Also see Sclero Forums, and How to Volunteer)


    This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.

  10. Hi Beedee,


    I agree with Jo.  It's possible it might be morphea again, as it is possible for it to reactivate at any time. However, it could also be anything else.


    Even if it is morphea, its better to begin treatment asap because it is far easier to prevent progression than it is to clear up existing damage. 


    For others reading this, I'd like to point out that with any type of scleroderma, it is never okay for us to simply assume that a new symptom or reactivation is "just" scleroderma.  We are just as vulnerable -- if not more -- to everything that anyone else can get.  So every symptom or significant worsening should be evaluated from scratch on its own merits, with the initial assumption being that it is *not* scleroderma so that the logic train to diagnosis does not get derailed.



  11. Hi Jabsdb,


    Welcome to Sclero Forums. I'm sorry that your young daughter has CREST and diabetes, and send my best wishes to both of you.  I just want to add my two cents.  Experts in juvenile scleroderma are very few and far between, however I second the motion that it would be a fantastic idea for your daughter to see one.  It would just be way too easy for your local doctors to pass certain symptoms off as being due to diabetes without thoroughly investigating scleroderma complications or even possibly other overlapping autoimmune diseases.


    A constant pitfall for anyone diagnosed with any illness is that new symptoms can easily be ascribed to that illness, without being investigated on their own merit. In her situation, you really need to be sure you are treating the right symptoms of the right illness. Particularly, CREST (Limited Systemic Sclerosis) carries a greater risk of pulmonary hypertension. There may also be other causes, too.  I have dizziness and faintness due to orthostatic intolerance and autoimmune ear disease.  Muscle weakness can be caused by myositis, and myositis can make it hard to lift things or even to get up out of a chair. Or, perhaps it could all be due to complications of diabetes.


    But my goodness, this is nothing to guess about.  You need to be able to make sure-footed decisions to improve her health!  Keep in touch as you pursue a specialist appointment.



  12. Our topic for the Tuesday, November 3rd Skype Chat will be Pets and Scleroderma.


    Do you have a pet?  If so, be prepared to share pictures of your pet or talk about them during this chat.


    We will also discuss special concerns regarding pets and scleroderma, for those who are considering getting a pet or a service animal.


    Join in the fun and get to "see" your other friends on sclero.org!  Jo and I look forward to "meeting" you on Skype next Tuesday.

  13. 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.



  14. 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.



  15. 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.



  16. 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.



  17. 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!



  18. 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.