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Shelley Ensz

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Everything posted by Shelley Ensz

  1. Mostly good news from my sclero doctor today.

    Hi Quiltfairy, I think we should throw a Sclero Happy Dance for you not having emphysema or hepatitis,, after all! What an absolute delight, and I am sure it is a huge relief to you, too. :emoticons-line-dance: Unfortunately, when we are sick we have to have so many tests, and often get inaccurate or conflicting diagnoses. Just the spectre of having a test can hatch a whole slew of worry bugs. But what a delightful thing it is, isn't it, to have some things properly ruled out, and others properly diagnosed? I hope your neck surgery goes on without a hitch, this time! :emoticons-group-hug:
  2. Fingertip amputation

    Hi Pinetree, I'm really glad things are going better for you. How have things been going back at work? :emoticons-group-hug:
  3. Quiltfairy, if everyone here with scleroderma who has been called a hypochondriac by their friends or family raised their hand and we took a screen shot of it, there probably wouldn't be a computer screen anywhere wide enough to display the whole picture. Although hypochondria is actually quite rare, inaccurate armchair diagnosis by unqualified people is probably at epidemic proportions, and it is typically helped along by the truly drastic delay in accurate diagnosis for scleroderma. But, it is what it is. You can't fight a "diagnosis" of hypochondria by explaining more about your symptoms, because that just affirms the diagnosis in their mind. What I do is try to silently forgive them for being terminally stupid, and in the case of relatives, I really hope that the terminal stupidity is not genetic. And if anyone has found a more effective way to deal with this all-too-common situation, we'd surely all love to hear about it. :emoticons-group-hug:
  4. Lizzie, hello it's great to hear from you again! Amanda, yes, it is the different systems for diagnosis used hither and yon, and also changed over time, that makes the categories for limited and diffuse more of a moving target. You have what would likely be called rapid onset diffuse scleroderma in the U.S. So people should be aware that their officially designated type of scleroderma may sometimes change only because they change doctors or move to other countries, even if their illness hasn't changed in any way. And Lizzie's case illustrates the gray area, which basically means scleroderma is sometimes going to do whatever it pleases, regardless of how it is labeled (or not) at the moment. Unfortunately, our bodies more often than not fail to read the textbook description for scleroderma, and creatively do their own thing, either worsening or healing on their own accord. :emoticons-group-hug:
  5. Hi Grey, The chief advantage you have, over other people in your same boat, is that your illness has been identified already. This is extremely significant because you, and your doctors, are already aware of the possible complications you may face, with both scleroderma and pulmonary hypertension. Therefore, you are highly likely to maintain good health habits and appropriate medical care, and identify any complications early on, when they are at their most treatable. This puts everything in your favor for increased longevity under the circumstances. Also, you have sought reliable sources for support, which means you aren't going to be left dangling emotionally, which would make you even more vulnerable to worsened health. Clearly, you have already opted out of the "diagnosed by autopsy" category. Rather you are in the "living with scleroderma" category and with any luck and a good degree of planning and proper health habits and medical care, I trust you will be one of those who s t r e t c h those statistics to the maximum. In this day and age, with improved detection and treatments, that is both possible, and perhaps even likely. :emoticons-group-hug:
  6. Are you new to Sclero Forums and in need of an avatar for your profile page, or are you an old member who would like to update yours? Here is a site that might help you, Mr. EduHowTo, with 15 Free Safe AVATAR Creators. I've used the first site they list, DoppelMe, to create my current Sclero Forums avatar. We strongly recommend against using your real name or an actual, identifiable photo of yourself due to all sorts of internet dangers, which are of course magnified when discussing our health issues. Speaking of which, you might also need a new screen name, eh? There are sites that can help you pick a new screen name. One of them is Screen Name Generator. For our site, we need to keep our screen name neutral, without reference to politics, religion, sexual preferences, etc. so that we can remain focused on what unites us, not what could possibly divide us. Enjoy, have fun with these resources and we will be thrilled to see your new "facelift" on Sclero Forums! :emoticons-group-hug:
  7. Hi GreyPilgrim, I believe there was a study a few years back in the U.K. which showed that about 40% of systemic scleroderma patients don't even know exactly which type they have, presumably because our doctors never told us. Often that might be because even our doctors are not entirely certain. It is not unusual for things to be fuzzy or borderline because this is not a cut-and-dried disease. In fact, its more of a moving target, since researchers seem to be forever debating how to classify the subtypes. One hazy thing that began years ago is that there are two different systems for systemic sclerosis. One considers skin involvement above the wrist to indicate diffuse scleroderma; the other insists that only skin involvement above the elbows indicates diffuse. So by this reckoning, someone with skin involvement only up to their elbows would have limited scleroderma according to one doctor, and diffuse scleroderma by another. Keep in mind, the *only* thing that limited versus diffuse scleroderma really means is that the skin involvement is less extensive in limited scleroderma. Either type can affect virtually any part of the body, or occur at any speed. The involvement can range from fairly mild to severe to life threatening, and such complications can set in at any time over the course of the disease. Also, any type of systemic scleroderma can spontaneously settle down, or even recede, even without any treatment. In fact, the normal course of the disease is to wax and wane, and that is what makes studying treatments for scleroderma invariably confusing and frustrating for researchers. It is common for them to think they are on the brink of a cure for scleroderma until large-scale clinical trails are unblinded and reveal that the drastic improvements that were seen were just as common in both the treated and the placebo groups. Since there is a such a strong placebo effect in scleroderma, so strong that it even confounds the researchers, one of the important take aways is that it could be very helpful to all of us to *believe* that our treatment plan or health habits will improve our health. A positive attitude is very likely a boon for us, which is great news as being positive is only a learnable skill and it is not dependent on our circumstances or genetics. Now, don't get me wrong. I don't think a positive attitude will prevent scleroderma or even cure it. Rather, that it will just put things in our favor to help our bodies make the best of a bad situation. It drives me bonkers when people over-credit attitude, as though it will make anyone or everyone overcome anything or everything, and thus live forever in perfect health. That is not a positive attitude, that is magical thinking, on a scale that is out of touch with reality. No, I'm just talking about how attitude can take the edge off things and at minimum make our journey more pleasant for us even if, in the end, it is the same journey that it would be if it was accompanied by a totally negative attitude. Bottom line? The methotrexate will help you the absolute most if you throw all your belief into it. It also would be helpful to *expect* that your scleroderma symptoms will relent a bit, just in the natural course of the disease. Take the positive thoughts about methotrexate plus the natural waning of the disease, and you have a LOT to be positive and hopeful about! And those positive and hopeful thoughts will sway your immune system through all those fancy neuroendocrine or whatever pathways. It's an interesting thing to know what type of scleroderma we have, but it is seldom a necessity, and few of us actually know for absolutely certain what type we have. There is usually a lot of wiggle room between what our symptoms, our blood work, and what our doctor(s) have told us. My conclusion is it has to be extremely common for most of us to be self-identifying with only our best guess. I would also venture to say from my observation of the stories submitted on our main site and our book series, that the majority of people have pretty accurately pegged themselves, when pressed to identify as having either limited or diffuse. Therefore, I say, that if you think you have diffuse scleroderma based on this or that, you are probably right, but it will also probably take years for that to be confirmed by your doctor, and even then, another doctor might disagree with the classification, if, for example, your skin involvement is not yet above your elbows. So, are you telling the "truth" or not if you tell people you have diffuse scleroderma? I'd venture to say "yes", because you are basing it on some identifiable fact that means it is more likely than not; with the caveat that it would be true unless your scleroderma expert has put you in another permanent category and explained their reasoning to you. And in this usually fogged-in realm, that's about as good as it can get. I hope it will help you to realize that very few things are carved in stone when it comes to scleroderma types, and that most things about it are grey and not as black and white as most of us would wish. :emoticons-group-hug:
  8. Hi Greypilgrim, I just wrote a nice long reply and lost it all by accidentally hitting the back button. So this will be much shorter! As it happens, there's huge variation in all types of scleroderma; and I think Amanda is referring primarily to the rapid-onset form of severe diffuse scleroderma, which thankfully is the most rare because it carries the worst prognosis of all. But "regular" diffuse scleroderma can develop at any pace, although overall it tends to develop faster than Limited Systemic Scleroderma. There's an old abstract by Steen and Medsger, Severe organ involvement in systemic sclerosis with diffuse scleroderma, which says, "Of the 953 patients with diffuse scleroderma, kidney involvement developed in 177 (19%), heart involvement in 143 (15%), lung involvement in 151 (16%), GI tract involvement in 74 (8%), and skin involvement in 233 (24%). Severe skin and kidney involvement occurred during the first 3 years in 70% of those who ever developed these problems throughout a mean of 10 years of followup. Severe heart, lung, and GI tract involvement developed during the first 3 years in 45-55% of those who were ever affected." All of the emphasis is mine. Make of the statistics what you will, but basically, the first three years are the riskiest with diffuse scleroderma, however based on this study, having diffuse scleroderma would make it much more likely for you to not develop skin involvement over the next ten years! That's the up side. The down side is that, however unpleasant and even disabling it can be, scleroderma skin involvement has never killed anyone. It is the internal organ involvement that can be life-threatening, and with diffuse scleroderma, kidney involvement is the greatest risk of all, but three is still a 4 out of 5 chance of escaping that particular problem...if you keep your focus on the sunny side of the statistics. :emoticons-group-hug:
  9. Some days.

    Hi Quiltfairy, You have a lot of dogs! How precious. And how inspiring Tony is, too. I hadn't visited our photo gallery for awhile so it was really fun looking through it again! :emoticons-group-hug:
  10. Update.

    Hi Quiltfairy, It sure sounds like your scleroderma doctor is on the ball and watching out for you very well. Right off hand, I'm sure few people would associate tornadoes with an increased risk of hepatitis, but now that you mention it, I can see how anything that disrupts the sewer system could create a lot of risk to public health. I especially love the way you planned your medical trip to include time out for meeting with a friend and getting your sewing machine repaired. Those sort of things are vital to our well-being, often even more so than medical care. Friendship and hobbies provide an uplift that is great for our immune system and they provide a much-needed buffer to build our resilience. Two thumbs up for that! :emoticons-clap: :emoticons-group-hug:
  11. Fingertip amputation

    Hi Pinetree, Is your finger healing properly, this time around? I really hope that your healing journey goes smoother this time around. Did you know that stress can reduce wound healing? We had a marvelous article, which I think is expired now, about how even a single argument among married couples can slow down the healing of a wound by several days. I say it is marvelous because it gives all of us a huge incentive to reduce all sources of unnecessary stress in our lives and to increase our emotional resilience. I suspect what happens is that we all have only so much energy to work with each day, and every bit of stress gobbles up some of our energy. It takes tremendous energy for our bodies to heal, thus, stress (or doing too much of anything), depletes the energy that we need for healing. Of course, my theory could be entirely full of it! But it can't hurt, and might help, to maximize relaxation in your life right now. It's a great time to tune out the negative, put on lovely music, relax with a (decaf) tea, and take a luxurious nap. A cheerful tune for your healing journey could be, "Don't worry, be happy!" We're all eager to hear how things are progressing, and hopeful that they are now going in the right direction. Keep us posted, okay? :emoticons-group-hug:
  12. Disability Review

    Hi Sweet, After so many years, it would probably take a downright miracle to cure you, especially of scleroderma. They know that. They just need to follow up to make sure you aren't somehow back to work full time, without having let them know about it. Just fill out what they ask for and send it back in. If they need any more info, they will let you know. Miocean's situation is a little different, as they typically review people who have had transplants, or major life-changing treatments, to see if they are now cured and able to return to work full time. But unless you've enjoyed some tremendous curative treatment for scleroderma that has had you bouncing back to work full time, you hardly have anything at all to worry about...except, unfortunately, still being sick, and still not being able to work full time. :emoticons-group-hug:
  13. Gareth update

    Hi Margaret, I'd just say that in general, difficulty swallowing is not painful. As in, not continuously painful, for most of us but there are exceptions, especially when there is a lot of heartburn or throat ulcers, or severe narrowing. And when food goes down very slowly or actually gets stuck, that can be another matter entirely, and one that sometimes depends on the food, too. For example, soft scrambled eggs would be perhaps a bit uncomfortable if stuck (although its not as likely to get stuck at all if it is well chewed), but dry toast, poorly chewed, could feel very harsh or grating or irritating or downright painful, like it is scraping the sides of the throat going down. Most of us quickly learn that we need to eat slowly and chew carefully, and we tend to favor softer foods. So for example, Gareth would probably find a breakfast of custard preferable to dry toast, or prefer a smoothie over chips and salsa. Oddly enough, though, there is a gene that causes some people to dislike soft foods (like pudding) because to them such things taste slimey. However, most people thoroughly enjoy soft foods and incorporating more soft foods -- or even "liquid diet" recipes -- can make mealtimes much more enjoyable when trying to cope with swallowing difficulties. See more on our Scleroderma and Difficulty Swallowing (Dysphagia) page. :emoticons-group-hug:
  14. Coming back after a while

    Hi Kamlesh, I'm just dropping by to say hello, and welcome back! In fact, I'd like to use this as an opportunity to remind many of our members that it is never "too late" to touch base again. You'd be surprised how many of us remember, and miss and wonder about, those who are not actively publicly posting on the forums. It doesn't matter how much time has elapsed, our collective memory goes back for over 15 years. And if it's been so long that you've even forgotten your username, feel free to join again; and if you let Jo know, she can often find your old username and reunite us with your old messages, as well. In short, we are always happy to hear from all of you. Okay now, back to you, Kamlesh. I'm very impressed with the way you are hanging in there, and using your meditation and faith to fill the gaps left by the ravages of illness. It's pleasant when our medications or treatments work and allay the pain or quell our symptoms. But frankly, we all know that sooner or later, there will be cracks in the system that may leave us mostly to our own wits for somehow coping with symptoms that cannot be halted, reversed, or assuaged. That's when those of us, like you, who have studiously developed our emotional strength and resilience, find ourselves so grateful for the attitudes - and friends -- that we've developed along the way. Kudos to you, for using everything at your command for helping deal with scleroderma -- and not just exclusively medical treatments. You set a fine example for us all! :emoticons-group-hug:
  15. Suggestions please!

    Well, I need to backtrack a little here. I just *assumed* that we were discussing an interesting variance in peripheral neuropathy symptoms (worse at some times than others), due to connective tissue disease, and so I was looking for reasons why the pain or symptoms would vary. I'm pretty sure this is what we were indeed talking about, but for people new to this site or scleroderma or topic of neuropathy in general, here is a link on Causes of Peripheral Neuropathy, which are many and varied. It's possible that a person with scleroderma could also develop neuropathy from *additional* causes, such as diabetes, infections, medications, cancer, vitamin deficiences, or thyroid problems. :emoticons-group-hug:
  16. Gareth update

    Hi Margaret, Thank you for the update on Gareth. You know he is dear to all our hearts and we are always rooting for him. It sounds like he has a marvelous g.i. doctor, who is explaining things clearly and treating him well. I'm sure Gareth will feel better with his spiffy newly enlarged throat, and more Prilosec, too. Here's some yay-you-did-it balloons for Gareth: :balloons: And some teddy bear hugs: :emoticon-hug: :emoticon-hug: And all the usual ones for you, too: :emoticons-group-hug:
  17. Methotrexate or possible kidney involvement?

    Hi Grey, That's a good question about Glomular Filtration Rate. Here is a good link, Understanding GFR, by the National Kidney Disease Education Program. A quick recap from it is: A GFR of 60 or higher is in the normal range. A GFR below 60 may mean you have kidney disease. A GFR of 15 or lower may mean kidney failure Basically, when it drops below 60, then they take a closer look at any changes that may need to be made. When GFR is below 15, most people need either dialysis or a kidney transplant. Luckily, kidneys are very much like lungs, in that we are born with an abundance of excess capacity, and we can often skim by without treatment, even with pretty severe loss of function. That said, it's always wise to preserve whatever function we can, while still not otherwise jeopardizing our health. This is another fine example of where knowledge is power, and where the knowledge may also lead to a better night's sleep -- for most of us, or at least those with GFR's over 15 at the present time. :emoticons-group-hug:
  18. Fingertip amputation

    Hi Pinetree, Welcome to Sclero Forums. I'm very very sorry you had to have a fingertip amputation, this week. I am impressed with how well you seem to be managing it. I'm sure only a few of us would have had the nerve to opt for just local anaesthetic for that operation. I'm sending all sorts of good thoughts your way for a proper and careful recovery. :emoticons-group-hug:
  19. Celebrating SCLERO.ORG's 17th Anniversary!

    Thank you all for celebrating the 17th Anniversary of Sclero.org! Without all our tremendous worldwide volunteers and loyal followers, we would still be just that one first humble page of links that was very ambitiously named, "Scleroderma from A to Z". We have all been blessed with finding each other, and creating a world class community for ourselves, with the most stellar information and support to help us all deal best with scleroderma and related illnesses. My love and thanks to each and every one of you, for helping to make the sclero world a better place! :emoticons-yes: :terrific: :emoticons-clap: :emoticon-hug:
  20. Hello?

    Hi Fitorfat, Welcome to Sclero Forums! I'm sorry you have morphea but I am very glad you found us. I'm sure you'll be busy for awhile looking at all the info Jo provided. Be sure to catch Amanda's videos, too! Altogether, morphea is generally quite treatable now. It's always easier to prevent progression than to clear up any existing damage. :emoticons-group-hug:
  21. Suggestions please!

    Hi Amanda, Huh. Well, this is one for your doctor, obviously. But here are a few things that came to mind for me: 1. Variation in Medication Levels. If your medication levels are not consistent around the clock, you might have a reduction in pain control at night. 2. Biorhythms. Our body clock affects everything, including a natural temperature variation during various times of the day and night. You may also be having a naturally higher body temperature at night. 3. Lack of Distractions. This is often a big one for me. Sometimes we can be in a lot of pain but not notice it very much when our mind is occupied on other tasks. But, when we turn off the outside distractions, all the pain and agony comes home to roost. It's not that it's any different really, but rather that we have nothing else better to focus on, so we can't hardly not think about it, and whatever we dwell upon expands. 4. Different Ambient Temperatures. Maybe you have windows open during the day, or more air circulation. Even closing doors at night could affect the ambient temperature; or the body heat of another person in bed. 5. More Sicker. It could be that you are more sick, for whatever reason, and it is causing this symptom to be more pronounced. 6. Something New. Or, it could be something new setting in, or something masquerading as erythromelalgia, such as cellulitis. Altogether, it's quite curious. So please go to work on the logic of it, see what you come up with, and definitely see your doctor if necessary, of course! :emoticons-group-hug:
  22. New tendon friction rubs

    Hi Grey, I'm sorry you've developed three new tendon friction rubs. Have you had a chance to see your doctor about them yet? It's possible they might more likely be caused by scleroderma, than by the medications, but it really is one for your doctor to sort out, and, if caused by medication, to see if that means you need to stop it or not. I haven't looked up medication side effects for those drugs, but even if it is listed, it isn't okay to just assume that's what is causing yours...of course. Altogether, more questions than answers! But we'd love to hear what they advise, so please keep us posted. :emoticons-group-hug:
  23. Hi Marcia, Welcome to Sclero Forums! I'm sorry you have concerns about possible scleroderma, some troublesome symptoms, and that your blood work tested positive for it. Altogether, I think you are off to a good start with your rheumatologist. It sounds to me like they are taking you seriously and that they will be following you closely. And who knows, being on plaquenil might be just the ticket for you; it is often used with scleroderma and other connective tissue diseases. Most of the time, what we encounter with early stage disease is that their doctors disbelieve them, mostly because the initial symptoms are often mild so there is nothing definite to hang their hat on. I'd say you can relax, in that it sounds like you are betting proper care for the time being, and you are also aware of scleroderma experts now, and of the importance of seeing one if/when it ever seems like the time is right for you. If you're like most of us, you may not be able to entirely sidestep a case of the worry-warts, however, you can focus on funneling that energy into happy and productive things, like relaxing and refreshing hobbies, which many of us find to be our saving grace. :emoticons-group-hug:
  24. I Should Have Seen It Coming

    Hi Miocean, What a zoo. I admire your calmness in the eye of the storm. So, have you had the secretion test yet, or gotten the results of your lung test? Sometimes I think the only way to approach anything is to assume that nothing is ever going to go right, and then just be pleasantly surprised when things by some miracle go smoothly. And that seems to be the approach that you took! I have to keep reminding myself that the purpose of medical care is to heal. That's a real challenge when stress can topple our applecart so easily, isn't it? Thank you for modeling healthy patient patience for us. Next time I'm left waiting and wondering, I'll think to myself, if Miocean can handle that, I can handle this! But meanwhile, do you have any results, yet, already?! :emoticons-group-hug:
  25. En coup de sabre.

    Hi Jenny, Welcome to Sclero Forums! I'm sorry your daugher has en coup but I'm very glad that you found us, and I hope we can be a continuing source of information and support for you. Jo, Judy and Amanda have given you some great resources. Please keep in touch with regular updates and questions, we always appreciate that, and look forward to getting to know you better. :emoticons-group-hug:
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