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Shelley Ensz

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Everything posted by Shelley Ensz

  1. 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.
  2. Scar tissue

    Hi Margaret, Are you contemplating some sort of surgery for Gareth, or just curious. overall? Here are some hugs just for Gareth: :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.
  3. Leg swelling with pitting edema

    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.
  4. Leg swelling with pitting edema

    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?
  5. Undiagnosed, but terrified!

    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.
  6. Crackling sound from the lungs

    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.
  7. Amanda Thorpe's Blog: Sleep, eat, repeat!

    Hi Amanda, I just posted my shortest post ever in honor of this blog. As you know, I spent one year bedridden in the 1990s. Reading this, I'm counting my blessings that it was only one year. I know firsthand that horrible, sinking feeling of wondering if it will ever end. Or how. Welcome back!!! This is worthy of a Sclero Happy Dance.
  8. Upset, not sure if I am right

    Quiltfairy, as you can tell we are all fascinated by the idea of a peer support person, so please let us know what they are, what they are supposed to do and how we can all get one.
  9. Upset, not sure if I am right

    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.
  10. In the hospital

    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: 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!!
  11. GI Testing Completed

    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. :emoticons-group-hug:
  12. Crackling sound from the lungs

    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. :emoticons-group-hug:
  13. Atrophoderma Of Pasini And Pierini

    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. :emoticons-group-hug:
  14. Support for partners

    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. :emoticons-group-hug:
  15. Update on Neck Surgery

    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! :emoticons-group-hug:
  16. My rheumatologist appointment/capillaroscopy outcome

    Hi Mystique, Did you happen to also see our Dutch pages? Scleroderma patients without significant joint pain (which is common) frequently encounter rheumatologists who focus primarily on joint pain. Although scleroderma falls in the family of arthritis diseases like lupus and rheumatoid arthritis, and can occur in overlap with them, because scleroderma is so rare, the typical rheumatologist may only see one case in their entire career. It's likely that their comprehensive training on it in medical school included perhaps five minutes on scleroderma, if they were lucky. The major exception is rheumatologists who were fortunate enough to train at a medical school which also has a scleroderma center. Although they may not "specialize" in scleroderma themselves, they are typically an improved patient resource. In really remote areas, or when travel to a scleroderma center is simply impossible, the best bets are the closest largest medical university, or a rheumatologist who happened to study at a major scleroderma center. Luckily, with the internet and online listings of doctor medical histories, it is certainly challenging but usually not impossible to find the best scleroderma resource in any particular state or country, even if they aren't an actual listed expert. But the safest bet is to go to a listed scleroderma specialist, whenever possible. Be aware that *many* rheumatologists will list scleroderma as a specialty on their web pages, even if they don't have a whit of experience in it. This is because many web pages are automatically generated, and scleroderma is considered to be a form of arthritis, so web software (or webmasters) merrily toss that in. So, if they list it, you have to really dig to see if they actually studied at a scleroderma center, whether they are a part of any scleroderma clinical trials organizations, and whether any major scleroderma organization lists them as an expert. Well now I've written a whole thesis on the topic of finding an expert, haven't I? I'm sure it will help you a little bit, but I'm also hopeful it will help others who stumble on this thread, down the road. Hie thee to an expert, Mystique. Then you can rest assured that if you do have scleroderma, or early scleroderma, you can be properly monitored, treated (if necessary), and diagnosed (whenever it is appropriate). :emoticons-group-hug:
  17. Crackling sound from the lungs

    Hi Ronald, I'm very sorry you've found out that your lung problems are due to scleroderma. Unfortunately it's normal to encounter more challenges at the ten or twenty year mark, with or without treatment of any sort. It sounds like at least you are not guilty of taking too many medications. Therefore, you probably haven't worn out your liver or kidneys yet, which would mean you'll be in much better shape to undertake any necessary treatment now. Please keep us posted on how your tests are going. I know its a slog and a waiting game. I'm thinking of you and sending good thoughts your way. :emoticons-group-hug:
  18. My rheumatologist appointment/capillaroscopy outcome

    Hi Mystique, Since many ANA's are false-positive, it is a good idea to really focus on the symptoms instead. Hashimoto's, Raynaud's, and numb hands and feet might be the sickest you ever get, or they might be the harbinger of another autoimmune illness. It's customary in this situation to get baseline testing and then to be monitored for awhile. I've heard of many people in similar situations monitored for even ten to twenty years and then, finally and mercifully, getting the "all clear". As I understand it, with a few symptoms of connective tissue disease and a positive ANA, your odds are about 50% that no other diagnosable autoimmune disease will ever develop. But, that 50% is a lot higher risk than that of a normal, healthy person. Further complicating your situation is that Hashimoto's (and Sjogren's) seem to be the key conditions that tend to set the stage for future autoimmune developments. Its not a certainty, more like just an increased inclination. (See Polyautoimmunity) This leaves you in a delicate position. You might not ever be any sicker, so try to keep your head on straight that your future is definitely not all doom-and-gloom, but by the same token it would be an excellent idea to dutifully continue with your follow-ups until you are given the all-clear. The only thing I would change is that if I were you, and if I were not already doing so, is that I would see if I could be screened and followed by a listed scleroderma expert, because odds are very high that your local rheumatologist is not adept or deeply experienced when it comes to scleroderma. Scleroderma is a very difficult disease to diagnose, and doctors who are not extremely experienced in it can easily miss important clues. Furthermore, they can treat the illness either too aggressively or with way too little, way too late. Therefore, I would sleep a little better at night, knowing you have seen an expert. I know its maybe a huge fuss about nothing, there's at least a 50% chance of that, and certainly, from what you've mentioned so far, it doesn't sound like you are in danger of getting diagnosed with anything (more than you already have), just yet and maybe not ever! But still, it's good to be on the safe side of things, don't you think? Read more at Scleroderma Diagnosis. Or, just sit tight with your local doctors but if additional symptoms develop, then hie thee to an expert. But do put a listed expert on your radar, as it can take months to get in to see them for the first time and for most people it entails a trip out of state since real scleroderma experts are so very few and far between. :emoticons-group-hug:
  19. Suffering a horrific loss.

    Dear NorthStarHope, I am so terribly sorry for your loss. My heart goes out to you. Please always remember that we care, and we are always here for you. :emoticons-i-care:
  20. Odd Eye Issues

    Hi Kathy, I'm just following up to see, is your eye all better now, I hope? :emoticons-group-hug:
  21. Sclero Forums Guidelines

    I just modified our Mainstream Scientific guideline to read, "To avoid malicious codes, we only allow links that are from and within our www.sclero.org website or from any of the Top Notch medical sites listed on our Googling for a Diagnosis page." The prior version (from 2009) read, "To avoid malicious codes, we only allow links that are from and within our www.sclero.org website" but in reality, we do allow safe links to high quality, recent information on top quality mainstream medical web sites, namely, the ones listed on our Googling for a Diagnosis page. Our general rule of thumb is that we like to stick to medical abstracts that were published within the past three years, whenever possible, and especially when it comes to medications. For some rare or obtuse topics, we realize that just isn't feasible. Thank you for helping us make and keep Sclero Forums a thriving and responsible resource for people, all around the world!
  22. Aching joints

    Hi Jet, Welcome to Sclero Forums! I agree with Amanda and Jo entirely, as I am always prone to do. :D This is an issue to discuss with your medical experts. As Amanda pointed out, there really are times when exercise is contra-indicated (although I know it sounds like heresy!). Exercise can increase inflammation in systemic scleroderma, and that may be what you are encountering. It might also be that you just jumped in too fast and did too much too soon! Often our doctors will put us on a graded exercise program under the guidance of a physical therapist. Lacking that, they should give you some clear guidance on how to proceed. Generally when I'm starting from scratch again to build endurance, I need to begin with just gentle moseys for less than five minutes a day, and then increase from there gradually, as I can tolerate it. So you can imagine, I was very impressed with how far you must have gone on your bike ride, even going a few miles would be a huge achievement for me. One thing that happens when we are sick is that we try to use the same yardsticks as back when we were entirely healthy, and thus are continually perplexed as to why we can't do more. It's important to reset our yardstick and our expectations, so that we are beginning again from scratch and building from there as we can tolerate things. Otherwise, we are likely to send inflammation out of control and set our progress back. It's still often possible for us to improve our endurance, but it is very important for us to seek medical advice before we dive into exercise, especially with conditions such as scleroderma and GVHD, etc. See this (older) abstract, Exercise in systemic sclerosis intensifies systemic inflammation and oxidative stress on PubMed. Please keep in touch and let us know how things are going for you. :emoticons-group-hug:
  23. Crackling sound from the lungs

    Ronald, how did your chest x-ray turn out? I'm thinking of you and sending good thoughts your way. :emoticons-group-hug:
  24. Suffering a horrific loss.

    Dear Northstarhope, I'm terribly sorry to hear of the loss of your dear sweet husband. I can't even imagine the shock this must be for you and your family! My thoughts and sympathy are with you. Please remember that we are here for you, always. In deepest sympathy.