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Shelley Ensz

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Posts posted by Shelley Ensz

  1. Hi Phillip,


    Welcome to Sclero Forums. What you are describing is probably peripheral neuropathy, although please keep in mind that I'm not a doctor and have no medical training.


    Please see your doctor for proper diagnosis. Peripheral neuropathy can be caused by many things, including carpal tunnel and diabetes.


    You are correct in that googling fingertips like glue turns up our site first. But scleroderma is a very rare cause of this symptom, and largely because of sometimes associated symptoms like Raynauds, and carpal tunnel.


    Carpal tunnel is often very mild and can be assuaged by stopping or modifying actions that are impinging the nerves...such as being on the computer.


    I'm pretty confident that you will be quite relieved by your doctor's evaluation. I mean considering you likely had the wits scared out of you landing on our site first!


    It's the catch-22 of Internet medical information. It can be both a tremendous life-saving boon or an unnecessary scare.


    Please let us know how things turn out for you. Because I'm pretty sure it will be quite a comfort for others with this sort of symptom, particularly if that's the only symptom they have.

  2. Hi Ron,


    As it happens, it's not only the very serious heart and lung problems that can cause symptoms like this. I have had orthostatic intolerance for decades.  It can be part of neurological involvement in systemic sclerosis.  See: Neurological Involvement. 


    It can get very confusing when there is more than one thing going on, as there usually is in scleroderma. Unfortunately, it usually takes many medical tests to pinpoint the cause.  I felt like a guinea pig extraordinaire before they pieced together the basics for certain symptoms in my particular case.


    I think you'll just find it good to know, during the waiting-for-answers stage, that there can be symptom causes other than worst-case-scenario-organ-involvement.  It's certainly no walk in the park to live with orthostatic intolerance, or orthostatic intolerance along with other organ involvement and symptoms of scleroderma.


    But I think most of us can adjust to anything we know we have; it is most often the uncertainty that has us climbing the walls, isn't it?  I hope you get some solid answers soon.



  3. Hi Eoinok,


    The company that manufactures UVA1 units is Daavlin. They list distributors in South Korea, so it may be possible for you to get one. They have a contact form for inquiries on their site. Just go to daavlin.com for more information.


    And remember that of course, you want to make sure that you very carefully follow all of your doctor's instructions for treatment, and keep all of your follow-up appointment for skin cancer surveillance and to track your symptoms and recommended dosage. Your doctor will start by running a skin test, to determine what dose you need to start at. 


    Do not *ever* get in the headset that "more" will be "better".  You need just the exact dose prescribed to be beneficial for your immune system and not cause you to burn to a crisp. The sessions are extremely short (a matter of mere seconds) so always check and double check your settings, you cannot be too careful in using it.  Also, be sure to get protective equipment such as the UVA1 goggles and a face shield, and to read and follow all of the safety instructions.


    Let us know what you find out, and how things go for you.



  4. Hi Ronald,


    I understand your concern and its a good question, too. As luck would have it, they'll usually let you cough your guts out while doing the PFTs. It seems to be a fact of life for people who have any lung issues.


    They typically just wait until you're done with that round of coughing, and try again. Of course, you want to be sure you don't have an active infection when you're taking the test, because it makes your results meaningless, and it liberally spreads germs around rooms that are often inhabited by people who are immune suppressed.


    Meanwhile, just keep practicing your deep breathing, but do it reasonably and try not to pain yourself in the process. Just a little deeper than usual, without coughing your guts up, is enough to give your lungs a "hello, let's try expanding a tiny bit!" message that will leave you not gasping for air, coughing up your guts, or doubling over in pain.  After all, if its a terribly unpleasant task, your natural inclination will be to avoid it entirely.


    Think of it more like just doing a sniff, for starters.  Even find pleasant things to sniff, like fresh coffee grounds, or your aftershave. Notice how you inhale just a bit deeper but not uncomfortably so?  Start there. You're still in a healing process, so likely you will be better, and have less coughing, by the time you have the test.  Your doctor will know/assume that your breathing is worse now, as you've been sick.  So the point is to find out how you are doing once the worst of it has really cleared your system and you've had a chance to rebuild a bit of endurance.



  5. Hi Margaret,


    Unfortunately, scar tissue can build up after any surgery, even without scleroderma. And it creates a catch-22 because sometimes removing it can cause even more scar tissue. Sinus infections can become chronic, as you have discovered with Gareth. Just keep on treating it.  You've managed to pull him through so much, already! 


    Here are some more bear hugs for Gareth: :hug-bear: :hug-bear: :hug-bear: :hug-bear:

  6. Hi Quiltfairy,


    I'm sorry you're having such a very rough time of it, and that you have difficult decisions to make regarding your future living situation. I'm sure you can find good homes for your pets, but it might be a little early to be concerned with it. Many assisted living places and even nursing homes accept family pets these days. In fact that's one of the questions you could and should ask about any potential place, since pets are so important to you.


    Many people with chronic illness actually flourish when they are in a less demanding home environment!  You might find it amazing to be in a situation where all your needs are anticipated and taken care of, plus with plenty of company and activities. It could be a very refreshing and uplifting change of pace for you, and it might be something to consider doing while you can indeed still walk.  In fact, you might get enough physical therapy that way to actually improve.


    Remember, with scleroderma, its never over til its over.  The illness can stabilize or turn about at any time. There is no such thing as natural, inevitable progression, but rather a normal course of waxing and waning, even without any treatment at all.  During spells when I seem to be worsening, I try to cheer myself up with the thought that it simply "must mean" that improvement is just around the corner!  It's natural. It's expected.  And that helps keep my spirits up and perhaps even has some slight influence in bringing about bits and pieces of improvements. Who knows?  All I know is, it does make me feel good to think like that, or at least better than if I felt it was all doom and gloom and a downhill slide all the way.


    I imagine you're probably just feeling pure dread at the thought of any sort of change right now.  If you start perusing all your housing options though, you might find yourself intrigued.  Set up tours.  Visit during meal times so you get to see if the food is any good, and how cheerful the residents are. Avoid the centers where everyone is zoned out and drooling in wheelchairs, and gravitate towards the ones that have a full schedule of activities, or at least a few things you might enjoy.


    The best thing about any new housing is that, no matter what, you'll still have us and all your friends here in Sclero Forums will be rooting for you to make a good adjustment. I'm sorry the thought of any change is even necessary, but it is one nearly everyone faces if they manage to live long enough, or live through enough, so in that sense, you are definitely not alone.



  7. Hi Ronald,


    That's an excellent question and I'm glad you asked it. I think you might even like the answer (well, considering, and compared to.)


    Generally speaking, idiopathic pulmonary fibrosis (IPF, for those who don't know, means pulmonary fibrosis without a known underlying cause) has a much worse prognosis than the pulmonary fibrosis of scleroderma. See this article for a more thorough explanation:


    Lung Involvement by the University of Michigan Scleroderma Program.


    I've known many people with scleroderma who have lived with pulmonary fibrosis for many years. It frequently stabilizes, even without any treatment, and does not have the average horrible life expectancy as that of IPF.



  8. Hi Margaret,


    Are you contemplating some sort of surgery for Gareth, or just curious. overall? Here are some hugs just for Gareth:


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


    It's my understanding that they used to advise scleroderma patients to always avoid surgery, if possible, because of concerns about healing. Then, years ago, they did a study that found, on average, a normal healing process in scleroderma patients. It was felt that overall there was no increased risk of infection or too much scarring. It is possible for anyone to get infections or a keloidal reaction; it is not unique to scleroderma.


    People with scleroderma (or similar diseases) should discuss surgery plans with their rheumatologist or scleroderma expert.  Often it is necessary to change medication plans before surgery. Some people may need extra precautions for infection, especially if they are immune suppressed. And certainly if there is a history of difficulties with surgery or poor wound healing, that should be considered.


    Overall, I think it's a good plan to stringently avoid unnecessary surgery with scleroderma or any severe illness. But I have had a great many necessary surgeries over my lifetime, with entirely normal healing in the aftermath.



  9. Hi Ronald,


    Hmmm. Then you will probably need to get a pile of pillows or blankets for your bed. I think folded blankets work best, but use whatever you can muster. The idea is to get your legs up higher than your heart (your heart, not your head) to put gravity to work for you.


    For many years, I didn't have a recliner, so I had to rest in bed, and it was very hard for me to get situated properly, to be able to read or whatnot, because the idea is that you aren't sitting up in bed, you are laying down, to keep the legs higher.


    But that's another thing. It's my understanding that they normally recommend only 4 to 6 inches for elevation for acid reflux. Any more than that probably isn't helpful, and it might even be exacerbating your edema, because gravity is working against you and making it harder to get fluids going uphill.


    Perhaps cutting your elevation in half might work, along with creating some sort of leg elevation. Again, it doesn't have to be overkill, your legs don't need to be sky high, but rather just a bit higher than your heart.


    I also just put my feet up whenever I get the chance, even if they are not above my heart, as any little bit can help. I use foot rests under my computer, too.


    And of course, I'm not a doctor, I have no medical training at all, so be sure you make any changes based on a reliable medical source.



  10. Hi Ronald,


    In scleroderma, edema can occur from many different causes, as you've likely heard from your doctor by now. 


    When I've had it due to skin thickening, I've gained up to 30 pounds in a few weeks and I couldn't even wear most of my shoes. Water pills and anti-inflammatories helped a lot with that but sometimes it is also a matter of just waiting it out. That sort of thing is definitely something to see a scleroderma expert about.


    I also get edema from just sitting around too much, or having my legs down too much. It helps for me to use an easy chair whenever I'm relaxing, as elevating the feet reduces the swelling and can even prevent it.  Sometimes just too much salt in the diet (usually, hidden salt, like in any processed food) can make my hands or feet swell up like balloons.


    Usually its all easily remedied, by putting my feet up, getting more activity, not sitting around so much, watching salt more carefully, and drinking the right amount of fluids.  I say right amount, because dehydration can also cause fluid retention, which is a real catch-22.  Its good to keep electrolytes, in general, in good balance.


    Over time, you will gradually learn what's causing the issue for you, and how to avoid it. It's good your labs were normal, that is always a pleasant starting point. But after awhile, your primary care doctor will probably become immune to the situation, and poke at the spots and go, Huh, and move onto another subject -- once they are comfortable that the worst causes (organ failure, blood clots, etc.) are ruled out.


    If you don't already have a recliner, I'd recommend getting one, because they are comfortable and because I find it more enjoyable to be in the recliner than to try to prop my legs up on always toppling pillows in bed. And, keep us posted, let us know how things are going for you, okay?



  11. Hi Nick,


    Welcome to Sclero Forums. I'm sorry you have Raynaud's and that you are worried about having scleroderma.


    I suppose we could advise you until we're blue in the face to "not trouble trouble until trouble troubles you" and it wouldn't help a whit. What I would advise though is to take a really serious look at whether internet searching on this is currently making you feel better or worse. It somewhat depends on your approach to it.


    I *strongly* recommend trying to focus the majority of your research right now on just Raynaud's. First of all, you know you have Raynaud's, so it is a very solid issue to look into.


    Secondly, there's an awful lot to learn about Raynaud's!  This is the time when you should be investing a lot of time and energy in learning how to avoid attacks and how to recover from them.  Ideally you will be buying gloves and warmers, and trying out every suggestion for rewarming from an attack as quickly as possible. I'm hoping by the time you see the rheumatologist, you will have pretty much memorized our Raynaud's pages.


    The thing is, Raynaud's occurs all by itself about half the time. The rest of the time, it can be a symptom of other diseases -- even anxiety by itself -- and it is not exclusive to scleroderma. Worse than that, anxiety alone can cause attacks of Raynaud's, whether or not there is an underlying illness. So it behooves all of us to learn every trick in the book for managing our anxiety, which is a really cute trick, isn't it, when it is sometimes the harbinger of very serious illnesses.


    It helps me adjust to some things by just repeating to myself, "It is what it is."  That means, it is what it is, it is not what I imagine it to be, or catastrophize it to be, or what I am even just slightly fearful that it will be.  Worrying does not prevent trouble from happening to us, anymore than staring at a computer page will help it download faster, yet many of us cling to it anyway like it is a magic wand that will prevent the worst from befalling us.


    If you feel like you're over the cliff with worry, and normal measures or our brand of been-there-done-that wisdom isn't helping enough, then consider seeing a counselor. It's very handy to get counseling with the onset of any illness, as we can learn new ways of handling stress and making an optimum adjustment to a perplexing situation. 


    In your case, it is going to be dealing with uncertainty, even fear of the unknown, until you know more. And odds are, it could be a very long time before you have any solid answers, or are sure that you are out of the woods from anything worse happening.


    Anyway, we care. We're here for you. And I'm positive you can find some way to make lemonade or perhaps even  lemon cookies, out of this lemon.



  12. Hi Ronald,


    I've had shortness of breath on exertion for over 20 years now. By the time my lung involvement was caught, I already had fibrosis on the bases of both lungs. Since the damage was already done, and the inflammation over with, I didn't need any treatment for it.


    My lung function is still very good, as in, I certainly don't need oxygen. However I also get short of breath very easily, usually even walking at a normal pace on flat ground for a bit. The solution, in my case, is to just move slower and to stop and catch my breath as needed. Which is miles above needing to use oxygen, or being incapacitated.


    It can take awhile to really recuperate from any lung infection, so you can probably expect a little more improvement as you regain your endurance. Sometimes its not the lungs alone, but the heart and lungs working together, and being out of shape (which occurs very quickly, within a week or two of not exercising) exacerbates it. 


    If your doctor allows it, try to do just a tiny bit more every day. Like, moseying for one minute more on each walk. Try to keep a steady pace that doesn't leave you gasping for air, which is likely a lot slower than you are used to. What I like about this plan for improving endurance is that it leaves me feeling a sense of accomplishment, but also doesn't exhaust me or land me back in bed. And it is amazing how fast those tiny little minutes can add up, over the course of a month.  Gradually, you might notice a bit of improvement because your heart and lungs and muscles are starting to coordinate their efforts better, as you recover.


    You won't "recover" from scleroderma, of course, but you likely have a ways to go before you are really recovered from the flu. It can knock the socks of folks, and it can even take healthy people a long time before their functioning is really back to normal.  So please have patience with your recovery.


    Basically, you are not alone, even though each and every one of us has a different path and experience with this highly individualized disease.



  13. Hi Quiltfairy,


    First of all, I'm very sorry that you are feeling upset, and I hope that you can somehow mentally make your peace with this soon. I'm glad you turned to us, to help you think things over.


    Secondly, I've never heard of a peer support person before. I don't know what they are, how you get one, or what they are supposed to do. To me, "peer" usually means someone in pretty much the same boat; someone in a similar situation. But she sounds pretty healthy. So where does the "peer" come in, and in what way is she supposed to be helping you?


    Probably the closest you're going to come to "peer support" is right here in the forums, and even then, most of us are going to misfire and say things wrong while trying to offer support and a comforting shoulder. I would expect that a trained professional though (if indeed this is what she is) should probably usually have a little bit more wisdom or training when it comes to something like this.


    I think she was trying to be empathetic. It doesn't sound like she was intending to be mean or hurtful to you.  If she was purposefully saying mean things intending to make you feel bad, then I would definitely recommend that you report her. And, of course, I don't know what her role is, her training, how you came about getting her/their services, etc.


    As you probably know, I've experienced a lot of losses of immediate family members in the past few years. I found that my hurt and grief made me more sensitive than usual.  Many people made sincere efforts to comfort me with using some of the most insensitive references, or at least, they seemed insensitive to me.  At first I was reeling by what some people said. Then I realized I had to quickly get my footing with it, because likely such sort of comments were going to continue, maybe for years.


    What I did was I adopted a slogan, "Listen to the music, not the words."  I tried to get in touch with the underlying emotion people were trying to express, such as sympathy, empathy, love, or just letting me know they cared. Nobody was trying to be mean or hurtful or upsetting to me; it was just me interpreting it that way. I could have just as easily tuned out their words, listened to the music of their intention to care, felt comforted by that thought, and stayed on my healing path. I must say, even some "trained professionals" like doctors and nurses and social workers said some things that I didn't like.


    And oh the poor innocent people caught in my path when worse came to worse!  One poor nurse, caught in the tsnunami of my grief, exclaimed, "Oh, you must be strong!". I shut her up on that score, probably preventing her from ever ordering any other suddenly grief stricken person to be "strong", by saying, "NO! My goal is not to be strong -- it is to be flexible and resilient!"


    I really surprised myself, as I seldom have the right words at the right time. I always think of them the next day, or the next week if I mull it over long enough. So I'm very impressed that you had the presence of mind to confront her. I'm pretty sure she saw the error of her ways by the time you were done with her!  However, I still rather doubt she'll change unless she is given specific training and practice in how to respond differently, simply because she's human, too, and we all tend to shoot from the hip when we don't have a good script to follow.


    You're "right" in that, you have every "right" to be upset by anything that anyone ever says or does. But being "right" doesn't always mean there are necessary actions or retribution to make. I tend to think you've already settled the score.  But, I may be wrong, I often am, and so I'm very eager to hear what you and others have to say on the subject.


    Still and all, likely there will be a zillion times in your life when you can keep your spirits intact, and not let others get you down, by listening to the music, not the words.


    And especially, if I've said anything wrong in this explanation, or any others anywhere on the forums ever, I hope that others listen to my music -- I care! -- and not my words, especially if the music is more soothing.



  14. Hi Miocean,


    I'm very sorry to hear you are in the hospital. :sick2:


    I hope you improve enough to get home soon!


    I'm sending some extra flowers your way!  :flowers: :flowers: :flowers:


    But in the meantime, please remember to haul out your camera and take lots of photos for your ISN Medical Photos collection. We can never have too many pictures of yucky hospital equipment!   I actually get frustrated when they are taking blood and I can't figure out how to shoot one-handed, and I'm pretty sure we're kindred sisters when it comes to artistic and photographic opportunities! :emoticons-yes:

    More seriously, that's fantastic that you advocated for keeping your private room. That was smart and sensible and downright necessary.  Good going!!

  15. Hi Miocean,


    Thank you for the update on your pulmonary visit. What I couldn't really tell from your last post is whether or not you were entirely happy with the results of that visit?  I know you had high hopes for it, and I often find myself crushed after getting up my hopes, for nearly anything. 


    Did you feel satisfied with the care, and explanations?  I absolutely agree that many changes (both good and bad) occur that don't show up on tests, either right away, or ever.


    I've even had times where I've been feeling and functioning a lot better than usual, but my test results look the same or even worse. That makes it really hard to weigh my perceptions against reality, although if I'm feeling better, it's a very hard sale for anyone to convince me I'm actually worse, and perhaps vice versa, too.



  16. Hi Ronald,


    I'm sorry you had an episode of shortness of breath. I hope you get some more answers soon.


    Please keep in mind that I'm not a doctor, and have no medical training at all. It's my understanding that rescue inhalers can work near-miracles for the most common causes of shortness of breath (dyspnea), such as most lung problems including asthma, allergies, COPD, and inflammation.


    However, they won't resolve an episode of shortness of breath if it is caused by other things, such as a pneumothorax (collapsed lung), or issues outside of the lungs such as pulmonary hypertension, heart failure or heart attack,


    Since so far you've had an isolated event, and it was perhaps mostly inspired by the infection or a clogging of the airways due to phlegm, you might only need the inhaler temporarily.


    You might want to consider some self-monitoring while things are getting sorted out. They recommend that all people with systemic scleroderma take their own blood pressure daily, to detect and alert for the initial signs of sudden kidney failure or other complications. Simply taking and charting your blood pressure and pulse once a day would establish your baselines (if you aren't already doing this.)


    Then, since you have lung concerns now, you might really like to have a little device for measuring your oxygen saturation. An oximeter is just a tiny (and rather inexpensive) device you clip onto your finger whenever you want. Normal sats for entirely healthy people are probably about 96 to 100%.


    Your lung doctor can advise you as to what they consider a reasonable cut-off point for you, but the general guideline for oxygen supplementation to be covered by insurance companies is that sats regularly fall below 88%, on testing in the doctor's office, either at rest or with a medically supervised six-minute walk.


    Those technical details aside, you can buy a pulse oximeter online, or at a drug store. They are often used by athletes. The peace of mind they can deliver for someone with lung problems is amazing!  You can know whether or not you are over-exerting, or if your shortness of breath is caused by an actual lack of oxygen -- or something else.


    Tracking readings once a day for years can establish a pattern, and you can know very quickly whether you are improving or worsening with medication or exercise. It's something to consider, at least, if you don't already have and use one.



  17. Hi Pinkism,


    Welcome to Sclero Forums!  I'm very glad you've found us, and I hope you stick around. 


    As you know, Atrophoderma of Pasisni and Pierini is a very rare disease, and we don't have very much information on it yet.  We serve people with scleroderma and related diseases, like yours.  We are sort of one big rare disease family around here.


    I'd most especially like to encourage you to post symptom photos in our Sclero Forums Gallery.  Please label them well, so people know what it is, and let us know about it in this thread. It really will help raise awareness, and let others know they are not alone, as well.



  18. Hello Maz,


    Welcome to Sclero Forums. I'm glad you found us, but sorry that your husband is so severely ill.  Our forums are for everyone in the world who are affected by scleroderma and related illnesses or symptoms, including spouses, caregivers, friends, family, and surviving loved ones.


    You'll notice that we grapple with the entire range of issues here, from mild or even frivolous to downright serious end-of-life issues. So you've absolutely come to the right place for support. I'm so very sorry for your predicament. My heart goes out to you. I'm sending some extra hugs your way.



  19. Hi Quiltfairy,


    I'm delighted to hear that you are recovering well from your neck surgery!


    I'm very sorry about your mom.  Sometimes old age itself can seem very scleroderma-like, as health issues multiply. It's pretty rare for scleroderma to run in families, but it does happen. For more info on that, see Genetics and Scleroderma. We also have some info on Diabetes.


    Now I'll have to go take a peek at your photos!