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Shelley Ensz

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Posts posted by Shelley Ensz


  1. Hi Mammabear,

     

    A bucket list is a great idea for anyone, whether they are healthy or sick. 

     

    It's a very positive approach to take, and also one to revise whenever your abilities increase or decrease. At the top of my To Do list, I always put Rest - Refresh - Relax, so that I always have a sense of accomplishment, come what may, and that alone makes me happy.

     

    Sometimes you may need to swap out Tour of Europe to Tour of Neighborhood Coffee Shops. Or swap Become Olympian Gold Medalist for Play a Card Game Tonight. What matters isn't achieving any bucket list items, so much as having a list of things that we can look forward to.  Setting a timer to watch the sunset tonight can be just as inspiring a goal as climbing a mountain, if we're doing what is within our present abilities and entirely letting go of self-pity (so that we can wholeheartedly enjoy it.)

     

    :hug-group:


  2. Hi Miocean,

     

    I'm thrilled that you are finally home!  I've found there is a vast difference between hospitals, even ones in the same neighborhood. You may not notice it quite so much if you're in an area of outstanding facilities, or if you go to the really major centers. In the poorly equipped and staffed centers, sometimes the caring of a few staff members really shines brightly, as we are so aware of the exceptional effort they are taking under adverse circumstances. 

     

    I hope that you settle in okay at home now, and that your home services are helpful, too.

     

    :hug-group:


  3. Hi Mammabear,

     

    One of the things they study in regard to scleroderma is "fear of progression".  It is so easy for us to sink into fear, over anything, not to mention something like scleroderma!  But that's one reason why we all hunker together here, to provide inspiration and encouragement for each other.

     

    I've long outlived many dire predictions, and many others here have, too. I find it helpful to try to focus on how to make today as fun and happy and joyful as possible. By building many little joys into our daily routine, we don't need to fear the future quite as much, because we have confidence that we can find some way to somehow make ourselves happy regardless of our outward circumstances.

     

    The most difficult thing for me was learning to not take life so seriously just because I had a serious illness. The illness will be whatever it is going to be. We have little control over that, except for trying to get the wisest counsel and do our best to follow it.  Then for the rest of it, it can help reduce our stress to take things as lightly as possible; to try to find the silly side of ourselves and of humanity.

     

    I hope your new wonderful friends here will warm your heart this holiday season and brighten your life in the coming year.

     

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

     

    :hug-group:


  4. Hi Miocean,

     

    Wow, I was not expecting an update like that. I'm sorry all this has happened to you, and right when you wanted to be going on vacation. And now you might be stranded in the hospital for the holiday, too?

     

    Well, I am thinking of you and sending lots of good thoughts your way. I don't want to even imagine your holiday dinner. Like, yuck!

     

    Are you at least rid of the crazy roommate?

     

    :hug-group:


  5. Hi Tully,

     

    Oh don't worry, we are all used to always thinking everyone else has it worse than us on some days, and that we are the worst of all, on other days.

     

    For each of us, our journey and our situation is better than some, and worse or even much worse, than others. So all that really matters is that we tell our stories, and share our journeys, and be there for each other.

     

    We are all in it together, and our togetherness makes all our collective joys, and sorrows, easier to bear.

     

    :hug-group:


  6. Ah, my favorite quote of the day, "Tully, I suggest that, going forward, you give yourself the credit you deserve."

     

    Couldn't we all, shouldn't we all, give ourselves the credit we deserve?  I hope everyone reading this who is affected by scleroderma or illness or adversity in any way, takes the time right now to pat themself on the back, and give themself more credit, if only for surviving it so far, rather than berating ourselves for not merrily thriving our way through every single second of it.

     

    :hug-group:


  7. 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!

     

    :hug-group:


  8. 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. 

     

    :hug-group:


  9. 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.

     

    :hug-group:


  10. 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.

     

    :hug-group:


  11. 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.

     

    :hug-group:


  12. 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.

     

    :hug-group:


  13. 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.

     

    :hug-group:


  14. 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!

     

    :hug-group:


  15. 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.


  16. 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.

     

    :hug-group:


  17. 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.

     

    :hug-group:

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