Shelley Ensz

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Everything posted by Shelley Ensz

  1. 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:
  2. 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:
  3. 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:
  4. 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:
  5. 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:
  6. 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:
  7. 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:
  8. 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:
  9. 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:
  10. 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:
  11. 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:
  12. Thank you all for celebrating the 17th Anniversary of! 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:
  13. 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:
  14. 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:
  15. 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:
  16. 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:
  17. 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:
  18. 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:
  19. I'm delighted to announce that Jo Frowde has been promoted to ISN Assistant Webmaster! In this position, she will be developing and coding new content for the website. Jo is also an ISN News Manager, Manager of Sclero Forums and a Sclero Forums Chat Host. Posted 01/06/2015. (Also see: How to Volunteer) Please join me in thanking her for her amazing service to our nonprofit agency throughout the years, and for her incredible dedication to learning all the intricasies of webmastering to further benefit the ISN and our worldwide scleroderma community. Thank you and major congrats, Jo! :happy-day: :emoticons-thankyou: :emoticons-clap:
  20. Hi Grey, I'm delighted that you were happy with your care at Johns Hopkins. They are an excellent scleroderma center. And it is *always* a good thing to not be in immediate need of a stem cell transplant, isn't it? There are many different ways to categorize systemic scleroderma. Some doctors define skin tightening only above the elbows as being diffuse whereas others use the above-the-wrist definition, although many other factors also come into play in determining a particular category. Very often, patients aren't even told their subtype, and even when they are, it is sometimes subject to change, for example, if the skin tightening progresses. See Types of Scleroderma section for more info. :emoticons-group-hug:
  21. Hi Quiltfairy, Congrats on quitting smoking! What types of support have you rounded up for yourself, to be able to keep to it? Some ideas are that you can enroll in a quit smoking course as reinforcement, see your doctor to see if you might benefit from any aids such as nicotine patches if the going gets rough, a friend nearby who has quit and will help you over the rough patches, a series of treats lined up for yourself for each little goalpost along the way. The reason I mention all this is because I quit oh, roughly 200 times, before I was able to succeed at it. Once I made it for nearly a year and then relapsed! But mostly I'd make it a few hours or days or weeks and then my good intentions and resolve would bite the dust. I didn't actually succeed until I promised myself I'd adopt a cat from the humane society if I didn't have a single puff (I'd always fall for the "just one puff" call of addiction) for 3 weeks. As the shelter killed their overflow pets, I took it to heart that if I took a single puff, I would be causing a poor innocent cat to die. Then every time I thought of a cigarette, I had this awful vision of a dead cat, and the urges quickly began to subside! Then once I achieved our lovely cat, I promised myself that if I took a single puff, I would have to take him back to the humane society. And that is really a death knell, to be the cat taken back! I couldn't even dream of that, of course, which neatly kept me on course. I think the whole set up also kept me away from becoming morose by feeling too sorry for myself for what I was "sacrificing" as I was only giving up a habit -- not my life! But quitting was a long involved process for me because I was terribly addicted, and it took me a long time to figure out how to motivate myself. None of the usual quit-smoking tips worked for me. You'd still never get me to say I hate the smell, that it was a nasty, ugly habit, or the smoke was awful, that it cost too much! It was my best friend. It was always there for me, even in the middle of the night. It smelled heavenly if you ask me. It was my most favorite hobby! How can you resent money so well invested? And about health, who cared, my health was already shot, go talk to some one healthy about all that rot. I envy people who can do the usual stuff and quit. They can just think, oh yeah, that is no good, I'm done with it, and they are, and go on with their life as though nothing major had happened! But for me it was something very major, on par with divorcing someone I loved! Until I put it in the life-and-death of a cat perspective. It helped enormously that I valued an anonymous cat's life more than my own, of course. Over a year later, we moved, and had to put the cat up for adoption. By then I was amazed to find that the "dead cat" thing was so embedded in my brain that I couldn't go back to smoking, to this day. I must say though I am the only person I know who has ever taken the dead cat approach to smoking, but I was desperate and nothing else had worked for me, long term. You have a terrific start! Now, how can you reinforce this to make sure it lasts and isn't just another New Year's flash-in-the-pan resolution? Because it is good for you and may greatly extend your life with scleroderma -- reducing Raynaud's and the risk of gangrene and amputation, for sure! But as a reformed smoker for the past 25 years, I can say those reasons mean nothing to me; avoiding health complications is just a fringe benefit. I still love everything about smoking. It was a great old friend, and one that in the end, I was happy to wave goodbye to as I came home with my new kitty. So I wish you to the courage to do whatever it takes this New Year to find all the creative ways you need to keep breathing fresh, pure air! And remember we are always here for you, through thick or thin.
  22. And a belated Happy New Year to everyone, from me! :emoticons-line-dance:
  23. Hi Sara, The Mayo Clinic Scottsdale is a scleroderma center, and most of us would say that larger centers are well worth the wait, if there's no urgent problem. It is very common to encounter three to six months waits for a first rheumatology appointment in most parts of the U.S. for noncritical cases. In the meantime, you just seek all the usual care from your normal providers to manage symptoms, and as scleroderma is often managed by only treating symptoms as they arise, you likely are not missing out on much -- particularly since it is an average of six years from onset to diagnosis for women in the U.S. (and three for men with the same symptoms). I know how hard it is to wait, but at the Mayo you are very likely to get a really thorough evaluation so you'll feel confident about your care going forward. But of course we will support whatever decision you make, and wherever you end up! :emoticons-group-hug:
  24. Hi Grey, How did things go at Johns Hopkins? Did you have a chance to cover the question of stem cell transplant? :emoticons-group-hug:
  25. Hi Honeybee, If its something you are determined to do, you'll probably survive it if you are prepared. Generally speaking, it is much easier for most people to adjust going from a cold climate to a warmer one, particularly with scleroderma. There are areas of the US more like Queensland, like southern California. But you must have a particular interest in the Virginia/Maryland area. Do you have an option of going for a 3 month visit in the summer, which could allay many weather concerns? I'd also be worried about medical insurance coverage when traveling with a serious illness, especially if its more than just a few weeks. I second the motion that you are unlikely to get by on only public transportation in most places in the U.S. so look closely at your transportation arrangements. Then once your plans are set, relax and just have a blast exploring and enjoying your extended vacation. Traveling can be enormously fun and refreshing! :emoticons-group-hug: