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Shelley Ensz

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Posts posted by Shelley Ensz

  1. Hi Tbhof,


    Welcome to Sclero Forums. I'm sorry you think you may have Morphea and send my best wishes to you.


    There are several important things to keep in mind. One is, your spots might not be morphea. They could be many other things, including psoriasis, dermatitis or other things. I have systemic scleroderma, and when I developed a discolored patch, my doctor assumed it was morphea, even though it is very rare to have both morphea and systemic together.


    Eventually I had the plaque biopsied, and it turned out to be deposits as the side effect of medication. I had been on two medications that can cause such spots, both plaquenil and minocycline (an antibiotic), so my plaques are completely harmless and no treatment is necessary for them.


    I know this sounds horribly trite and may not be helpful at all.  But when I encounter worrisome things, I find any helpful phrase that may help reduce my anxiety and just repeat it to myself each time the worry pops up.  Things like, "It is what it is." Or, "Don't trouble trouble until trouble troubles you."  I even poke fun at myself with things like, "My favorite exercise is jumping....to conclusions!"


    Morphea comes along with a perfectly normal life expectancy. It does *not* automatically progress to systemic scleroderma and in fact, the overlap is very rare, anywhere from zero to 4 percent of people with morphea also get systemic. Those most at risk have the anticentromere antibody (and even that is not a guarantee, just a risk factor).  It is entirely normal for people with morphea to have one or two symptoms outside of the skin plaques, such as heartburn.  Heartburn is also extremely common in the general population of entirely healthy people, and it is very easily treated, so it is  nothing dire and most of us find it to be very easily managed once we know we have it and observe what makes it worse and what relieves it.


    Please keep in touch, and let us know how things go with your rheumatology appointment. We care, and hope that you are feeling better, and more comforted, soon.



  2. Hi Kimberly,


    People are certainly welcome to share their story in this thread.


    You may also want to read more posts throughout this forum, and also look at our incredible patient story collection, of over 1,000 patient and caregiver stories (in many languages) on our main site. Over 300 of these stories were included in our Voices of Scleroderma book series. And each of the stories are linked to relevant medical pages on our main site, so that people can see examples of what it is really like to live with an illness, or symptom.

  3. Hi StarStacee,


    Welcome to Sclero Forums. I'm sorry you have concerns about lupus or possible scleroderma.  As it happens, we are not doctors so we cannot diagnose anyone, of course. Anticentromere and Ro/SSA antibodies can occur in both lupus and scleroderma, and other autoimmune diseases, so they do not rule out lupus. Plaquenil is typically helpful for both lupus and scleroderma and other autoimmune diseases. If it's not helpful for you after a reasonable trial, then you should discuss possible discontinuation with your rheumatologist.


    If you doubt your diagnosis, then we always recommend getting a second opinion. Since you are not suffering any specific symptoms of scleroderma, such as tight skin or pulmonary fibrosis, then you may want to consult another lupus expert.  Try to find one with more education and experience than your current doctor, so that you can be more confident in their analysis.  You may also want to see our resources on Difficult Diagnosis.


    Good luck to you in getting it all sorted out!



  4. Hi Ron,


    What would really lift my spirits would be a nice long list of crazy things a person could do with a bedpan. I will donate the idea of decorating them with designer duct tape, perhaps the 70s peace sign version. And arranging an artistic display of them, perhaps spray painted and arranged like daisies, for a urology reception area.


    Luckily our sense of humor is infectious, and it's also the only organ that cannot be affected by scleroderma.

  5. Hi Quiltfairy,


    I'm very sorry your mom has been put into hospice, and send warm hugs to you and your whole family. 


    I know how very difficult it is to place do not resuscitate orders. The thing is, we have been so very misled by the media, into thinking that resuscitation is some sort of magic cure-all, whereas in reality there is an extremely low success rate in seniors, and usually people are only revived in order to experience much greater suffering, typically on a ventilator for the rest of their days; and in the end, we all lose the battle anyway. So it is a beautiful kindness to not force your mother to endure even more suffering. It is an extremely loving, albeit also extremely difficult, decision to make and to abide by, and to accept.


    May you and your family draw close and hold tight together, and use all the chances you have to let your mom know how much you love her.



  6. Hi Ron,


    I've had finger and toe ulcers, without having PAH, so although there is a correlation, and perhaps even a likelihood of PAH in your particular case, given so many other things, it is probably not an automatic shoe-in (which I mention for other people with digital ulcers who perhaps have a fresh worry over pulmonary hypertension).


    The right heart cath generally isn't as bad as advertised.  Between prep and recovery it can be just a few hours. It just sounds so much worse, and so much scarier, on paper than most people find it in real life.


    My late husband rated right heart caths as one of his favorites, among the invasive tests, and would even have his without sedation; but he was a crazy fool that way, he would also have his esophagus stretched without sedation and hop right back in the car to go to work again. He loved following the heart cath on the monitor, as its one of those things you can often watch (if you are game for that sort of gory stuff).  He also had very many bronchoscopies with biopsies, and he preferred heart caths over bronchs, so if you've ever had a bronch, you've probably already been through worse than the heart cath, and lived to tell about it.


    If you're not game for all the show-watching, which anxiety might just understandably toss out of the ball park for you long ahead of time, they do give the really good drugs for this one to really relax you. You will float off into a pleasant little cloud of relaxation, and should awake being able to throw on your street clothes and go home as soon as they give the all-clear.  You'll need to have a driver, and you will have some activity restrictions for the first day or two, so you can plan for an at-home movie fest or chug down a good summer book.


    If they are coming close to a PAH diagnosis, as I understand it, the right heart cath is really the only truly acceptable way to properly diagnose it, even though there is a constant push to use cheaper tests to diagnose it, they are simply not as accurate.  You might even mostly pass the other tests but flunk the right heart cath -- and vice versa.  You can look bad on the other tests, but be basically okay on the right heart cath.  And bear in mind, you can have plenty of stuff wrong, and have impaired breathing, without having full-scale, in-need-of-treatment PAH.


    You shouldn't be bed bound for more than an hour or so in recovery, provided everything goes fine, of course. Which it is very likely to, because you are conscientious, and conscientious people overall have better outcomes because they read the instructions and -- oh, dare I say! -- actually follow them.  It's normally the daredevils who mess up in aftercare by doing stupid stuff, and I just don't see you throwing caution to the wind, and getting drunk down at the local bowling alley and scratching your head over why your incision broke open and you don't feel so hot.


    So, if they eventually get around to doing the procedure, which would seem reasonable, you'll likely do great with it...or at least, a lot greater than the carefree ne'er-do-wells!



  7. Hi EGJason,


    It might be helpful if you could put line breaks in the blood tests, so we can sort out the ranges from the results. I'd like to try doing that myself, but might mess it up and change the meaning of the results that way.


    Basically, which of the blood tests are positive?  That would be a good starting point and we can provide you some info about the tests, provided we already have the overall understanding that the tests are not as important as the symptoms, and so on and so forth.



  8. Hi Margaret,


    I'm glad you are finally starting to get some real answers regarding Gareth's neck pain. I'm hoping that he won't need surgery, but physical therapy and such isn't any walk in the park, either.


    I like to plan something fun to do after every doctor's appointment, so I can look past the appointment, by looking forward to the fun. So what sort of fun does Gareth get after his MRI?  Like, does he get to pick the coffee shop to go to, or a special show to watch?  Yes, I do realize that with this plan, nearly every day would be Gareth Day...but I'm sure he won't object to the idea, will he?


    Keep us posted as things develop, of course.


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

  9. Hi Ron,


    I have scleroderma in overlap with many other autoimmune diseases, so its very hard for me to tell what's causing what.  I can feel very flu-like often, which I attribute (rightly or wrongly) to fibromyalgia, as that can cause a head-to-toe aching and just plain rotten feeling, along with fatigue.


    The way I tell it apart from the actual flu, is that my temperature is higher with the flu, and eventually with the flu there are more symptoms. If you are taking a lot of NSAIDs, they can suppress the fever, so sometimes I need to stop certain medications for a bit, to be sure that I'm not suppressing a rip-roaring fever of any sort.  We're all different, but it is normal for some of us with some autoimmune diseases to experience mild temperature elevations without having an acute infection. Therefore, you need to know your normal temperature pattern (high or low or various times of day) to be able to detect a significant change.


    Generally speaking, just feeling rotten with scleroderma from time to time is normal. But a new onset of rottenness can sometimes signify complications setting in, such as anemia.  Of course, it would help an awful lot for a person to actually be diagnosed with fibromyalgia in order to assign symptoms to it, so nobody with scleroderma should merely "assume" the reason for a significant change in well being is completely harmless.


    It basically takes a lot of time, patience, and a certain amount of guesswork and doctoring to figure out our own individual symptoms, and whether they are truly worrisome or not, or to know when they tip the scale into being worth a call to the doctor or a visit to ER. 


    With chronic illness, we often try to avoid rattling the cage of the healthcare system unnecessarily, don't we?  When I'm uncertain if it is serious enough or not, I call my insurance company's nurses line. They have often been astoundingly helpful!  They have reviewed all my symptoms, and in some cases advised me of home remedies I could do. They have told me I could avoid ER but needed to see my primary care doctor within a day or two. And, they have ordered me to go straight to ER, advised me as to whether I could drive myself or needed to take an ambulance, and sent advanced paperwork to the hospital.


    Altogether, they have spared me a lot of sleepless nights just wondering what was wrong, or figuring out what level of care the symptom required.  You may not have such a thing in Canada. If not, you may have a nurse's line or hospital ER department you could call and ask for a triage nurse, if something arises that is a bit more troubling than this particular round.  And I'm pointing all this out, of course, for others who stumble upon this thread at 3am, wondering if they have the real flu, or just another rousing go-round with scleroderma.


    I'm glad you feel great today, and I hope you feel even better tomorrow. The marvelous thing about scleroderma is that whenever we have a bad day, a better one is often just around the corner, which always give us something more pleasant to look forward to.



  10. Hi EGJason,


    Welcome to Sclero Forums. I'm sorry you have health concerns and send best wishes your way.


    Please keep in mind that none of us are doctors and we cannot diagnose you, nor explain your test results as they apply to your health.  Given the way your test results formatted, it is hard for me to read or understand them, to tell which results relate to which antibody.  Someone more familiar with lab test results can help you there.


    Basically, ANA tests can be positive in people who are entirely healthy, and negative in people who are entirely sick. By themselves, they do not automatically indicate disease. The most important thing, by far, are your clinical symptoms. Sun sensitivity can occur due to many things, including illnesses, infections, and medications. Your rheumatologist will sort out what the test results mean in light of your current symptoms and medical history.


    Antibodies are much more common in people who have relatives with any connective tissue disease, even though they might only ever develop one or two symptoms of connective tissue disease.  So if you have any relatives who may have had lupus or scleroderma or RA, etc., then you can take heart that sun sensitivity and some antibodies might be all you ever suffer from. At least, that is a thought to hold tight onto until you see your rheumatologist, because it should ease your stress, and stress alone can make nearly any illness worse.


    We also have many threads on this site from people who tested positive for all sorts of antibodies but who have not yet developed any significant disease (and vice versa). Often, test results change or disappear entirely when the blood is sent to another lab.  So be prepared to go to a rheumatologist, have them tell you that you are basically okay but they will see you once a year or if things change. Also do not be surprised if they rerun the tests and they turn out all negative.  Some rheumatologists only trust their own particular lab and will even ignore results from any other labs. So, what might be life-shatteringly important to you or I, might be just another pile of paper for their trashcan, to them.


    Obviously, I'm trying to talk you down from the cliff, as its a spot we've all been in, due to one interesting test or another. Bottom line, this means you might be coming down with something. Or, this might be as sick as you'll ever get.  Maybe your body is just still thrown for a loop from pregnancy.  Maybe this will go away, as many autoimmune things mysteriously appear and disappear on their own accord, even without any treatment at all.


    Find any comforting thought in what I've written, and hang onto it to try to stabilize your life until you get in to see a rheumatologist. They are the only ones who can properly assess things in your particular case. Often autoimmune diseases take an average of six years or more to diagnose, so do NOT expect this to be some sort of overnight thing.  We've heard of people who had some antibodies and some symptoms who were followed for several decades and then declared entirely healthy.  The same thing could happen to you.


    Try to lose yourself in anything positive for the time being. Absorb yourself in your hobbies, or work, or doing nice things with your family.  See movies, read books, absolutely anything, other than sun exposure, to try to maintain and lift your spirits until you know a little bit more.


    I'm sorry for this upset in your life. I hope you get some answers soon. Remember we are always here for you, even if you get an "all clear" from the rheumatologist.



  11. Thank you for posting this, Jo!


    I am very excited about our Skype chats and look forward to being able to meet a lot of our members this way.


    If you are someone who has never Skyped before, no worries. I hadn't done it myself until a few months ago. But it is very easy to do, simply downloading a free program, and the connections are free as well.  Don't be put off by any mentions of "paying" for things with Skype; I know I worried when I first saw references to that, and I was worried that there might be connection charges for skyping people overseas. But there aren't!


    I want to thank Jo and Amanda for bringing up the subject of Skype and educating me about it. It is a wonderful innovation for our chats, bringing them to a whole new level! 


    Do you like to Skype? If so, please feel free to talk about it in this thread, and perhaps explain a bit more to newbies how it works.



  12. Hi Kimberly,


    I apologize I got a little sidetracked on my last email. The primary difference between limited and diffuse systemic sclerosis is that in diffuse, the skin tightness extends above the wrists or elbows, or above the ankles or knees (depending on which definition your doctor uses.)  I think the most common definition is probably that skin involvement above the elbows or knees constitutes diffuse scleroderma. 


    Other than that, both limited and diffuse can affect any part of the body, including all the internal organs. Overall, limited has a better prognosis than diffuse, but there are significant exceptions, because there is a greater likelihood of pulmonary hypertension in limited.  So a person with moderate symptoms of diffuse could easily outlive a person with severe symptoms of limited. And there is no automatic progression of either type. It is very possible for symptoms to stabilize and often even improve, for months or even years at a stretch. The oldest person we're aware of who died with systemic scleroderma was in her mid-90's. One of our volunteers had systemic scleroderma for a full 50 years before she passed away, in her 60's. 


    So, it is entirely impossible to speculate on what version of scleroderma you have, when you haven't yet been diagnosed with scleroderma, and don't yet have any of the telltale skin involvement, nailfold clues, or specific antibodies. Having mild Raynaud's is an excellent thing, no matter whether you have limited or diffuse, but it doesn't specifically point to one or the other.  Right now, your question is impossible for your doctor to answer, and particularly impossible for us, with no medical training at all, to answer.


    You are asking for a crystal ball, and unfortunately, we are in exceedingly short supply of those around here. You appear to be experiencing a very slow onset of something. You are under excellent surveillance. Please keep in mind that the process of surveillance does not guarantee that you will eventually have any more severe illness ever diagnosed.  I know people who have been under observation for connective tissue diseases for up to 20 years, who were then given the "all clear".  Meaning, their doctors pronounced them entirely healthy! 


    Can you even imagine the stress they suffered for so long? Or how many of their holidays were filled with dread that it may be their last?  And, it was all entirely wasted, and suddenly they need to prepare for an old age they were sure they would never see. The thing is, this happens frequently, with surveillance for possible cancers and autoimmune diseases. So I need to answer not only aimed at you, in particular, but also at the hundreds of people who will stumble on this thread with their own worries, who are coping with trying to find a way to put them into perspective.


    I would like to tell all those people to garner as many facts on their potential illness as they can. Try to absorb the situation but not blow it out of proportion, either. And if they still can't get their head around the fact that their job is to live optimistically (their doctor's suspicions might be wrong, they often are!) after about two weeks of dwelling on it; if they find the question dragging them down or impairing their life or spirits in any way, then they should seek counseling.  Not because they are mentally ill or hypochondriacs!  But rather so they can learn additional coping skills, because uncertainty is going to be a major factor in their life. It could precipitate anxiety and depression that could be more life threatening than any cancer or autoimmune disease.


    People who are diagnosed often suffer from what is called Fear of Progression. Unfortunately, it can even happen to someone who is not yet diagnosed.  Education on the topic and professional support can help to assuage that, and in some cases, maybe even avoid it.  I don't want you, or anyone reading this to fall into that black hole.  Life either with or without any illness can be pumped full of joy and happiness and satisfaction, when we have the tools and skills and training for it.


    Therefore, I'm wishing you, and everyone reading this, more joy and gratitude and savoring of life today, as it is, in this moment. Because we can control our thoughts in this moment (and thus influence our emotions), but none of us can control the future, whether by hoping or by dreading. Here are some warm hugs to tide you, and everyone else, over, in this very moment.


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

  13. Hi Kimberly,


    I am 100% with you in terms of trying to prepare for life's challenges. I am always looking ahead, trying to tackle the next challenge.


    What took me the longest time to get, was that the illness itself does not matter. What really and truly matters is how we cope with it logically and emotionally. How do we find the wherewithal to love and share joy and happiness, when our own existence is threatened, either directly or by our own often overworked imagination?


    By fortifying ourselves by developing our physical and emotional resilience, we are able to make the most of our life and talents. So let's say you do have the very worst form of scleroderma and that your days are very numbered.


    What then? On your deathbed, in just a few months let's say, what would you regret? Would you regret not having invested enough time in worrying about scleroderma? Would you regret not having watched enough tv? Would you regret not having made a will? Or would you most regret being so worried that you forgot to hug your child, or tuck a love note into your spouses lunch, or draw wild lipstick hearts on the bathroom mirror.


    I totally get it that you are trying to look into the scary future and brace yourself for it. We are all in that same boat around here. But "it is what it is" and neither wishing nor dreading any particular diagnosis is going to alter the course of the disease. However, learning skills for coping with stress may actually alter the course of the disease, because certain types of stress have an adverse impact on the immune system.


    That's how, and why, it's good to let go of prognosis questions until you have a more certain diagnosis. It is a mind trap that most of us wish we hadn't fallen into. And trust me, I'd urge you to keep on worrying about it, if it would be of any possible benefit you. However you have already covered your bases by having this support group and seeing an expert, so it is okay to relax your vigilance now, in regard to prognosis. Provided, of course, that you live today so you have no regrets tomorrow.

  14. Hi Logan,


    Welcome to Sclero Forums. I'm sorry your mom has scleroderma and send my best wishes to all of you.


    The way to determine the best treatment, if any, is to have her consult a listed scleroderma expert. Not everyone is a good candidate for immune suppression, because it increases susceptibility to infection. But it does sound like your mom could benefit from seeing an expert so I hope you encourage her to do so!

  15. Hi Kimberly,


    Since you are having a lingering onset of something, you would absolutely not have the worst form of rapid onset diffuse scleroderma. It's begging the question, of course, to worry about the subtype when the main type of disease has yet to be diagnosed.


    And, no type is scleroderma is really preferential. Diffuse scleroderma often gets diagnosed faster, which is its own form of relief. And limited scleroderma can have fatal complications early on, sometimes.


    So I get it that you don't want diffuse. Nobody wants that. You want to live a long time. Join the crowd. The problem is though that you might be run over by a truck tomorrow, or you might thwart all predictions and live to 120, out living your children and all the rest of us.


    You see, the primary problem is that none of us have ultimate control, and wishing and hoping or dreading and worrying won't change that for a minute.


    So my question to you is, what are you doing today to savor and cherish this time with your husband and children? How can you make them laugh? What special treat can you surprise them with? How can you create a special memory today?


    The sooner we ask questions like that, and find answers, the sooner we start healing emotionally, which is the most important project of all, and it's something that can begin now and not some nebulous day in the future when we might be diagnosed.


    Here are some warm hugs to tide you over, along with a reminder that we are all better off living the moment we have right now, because it us the only one we have for certain.

  16. Hi Kimberly,


    Welcome to Sclero Forums. I'm sorry you are sick and send my best wishes to you.


    When they are referring to rapid onset of diffuse scleroderma, they are talking about a time period of weeks or perhaps a few months. It is very rare, but some people can get scleroderma and progress all the way to severe sclerodactyly within a few weeks of their initial symptoms.  People with rapid onset are most likely to get diagnosed quickly, because they display all the classic symptoms so fast, and the progression is so drastic and alarming that they often get referrals to a specialist sooner. Whereas people with slower onset with more insideous symptoms (puffy fingers instead of frozen ones, for example) are likely to linger in their primary care or rheumatologist's office for many years before scleroderma is ever seriously considered, by either the patient or the doctor.


    If you're being evaluated by a scleroderma expert on a consistent, ongoing basis you have very little to worry about, because if anything speeds up or gets worse, you will know right away. The most difficult thing for you may be to realize that a good 50% of people with UCTD never get a more definite diagnosis than that. UCTD is a diagnosis in and of itself.  You can have symptoms of a variety of connective tissue diseases without ever getting the full blown version of any of them.


    So one thing to do is to try to relax. Your illness might be as bad as it is ever going to get. It may even clear up on its own accord, and that stands true even it if is early scleroderma, because scleroderma can wax and wane even without any treatment at all.  UCTD is a form of arthritis, so you can tell people you have "arthritis" or mild or moderate arthritis or whatever term you think is most accurate at the moment.


    I mention this because you are in an awkward situation and many people you know will want to know the results of each of your doctor visits. With UCTD, your doctor is likely to discuss lupus at one visit, scleroderma at another, maybe call up ghosts of many other autoimmune diseases depending on how your symptoms change and develop and even clear up.  It is crazy-making for you and your friends and family, and very shortly they will all be looking at you as though you are a hypochondriac, thinking that, of course, if you REALLY had any disease, the doctor would surely have diagnosed it by now!


    Unfortunately that is simply seldom true in rheumatic diseases. But if you tell everyone you have arthritis, and that there are over 100 types of arthritis so doctors are debating on exactly which one you have or what combination, and likely will be debating the particulars for years, then people get off your case. That's because everyone knows someone with arthritis!  Its a term they get, but they do not get UCTD, and you'll feel personal pressure to get that "undifferentiated" differentiated in one big hurry, even though that is NOT the normal course of that disease!


    I know it is hard as all get out, but try to think of yourself as already being accurately diagnosed. UCTD is a diagnosis. So is arthritis. You have it. You may always have just exactly that, and it is NO LESS a disease than any other form of arthritis or even scleroderma. People with UCTD can be sicker than people with milder forms of scleroderma or lupus, and vice versa. After all, the entire range of autoimmune symptoms are open to you, whereas with specialized diseases, there is only a certain subset of symptoms that come into play.


    Also, you are welcome and entitled to go to any support group that primarily deals with your current most pressing symptoms at the time. That means you can settle right in here, and hold your head high. You are a real person with a real diagnosis and nothing to apologize for if your diagnosis remains the same for the next 50 years.


    Please also see our resources including a great video by our wonderful Amanda Thorpe on the subject of Difficult Diagnosis.

  17. Hi Margaret,


    Please keep in mind I'm not a doctor and I am even in need of a CPR refresher course. So just indulge me for my blathering on, and get real answers from Gareth's doctors.


    As I understand it, there really is such a thing as natural bone fusion, which means just letting the body gradually heal it on its own. The problem is, it can take a long time (a year or two?) to occur. The flip side of that is that surgery can be difficult, complications perhaps likely given Gareth's health, and recovery can take a long time, too.


    Since it's such a delicate thing to decide, if it were me, and I was you, and if there was any question of surgery, I'd probably get two opinions on the matter, no matter what the first doctor recommends.


    For the second opinion, I'd make it the very best spinal surgeon you can possibly locate given the restraints of Gareth's insurance. Then, bear in mind that a surgeon can sometimes see their job as recruiting for business and thus be more in favor of surgery than the average doctor. So if by chance they recommend against it for any reason, take that advice very seriously indeed.


    Also, I don't know if everyone automatically naturally heals, or if the situation only gets worse depending on the cause. Under even the best of circumstances, it's very difficult with chronic illness, to figure out what to treat, and what to leave well enough alone, and I'm sure it's all the more challenging given Gareth's overall health predicaments.


    Please give him an extra hug, just from me.


    :hug-bear: :hug-bear:

  18. Hi Margaret,


    I am just heartbroken that Gareth has been suffering so much, so long, and that your reports have fallen on deaf ears, until now.  I just wish I could give you both a great big -- but very gentle -- hug!  I hope that something can be done to either fix this issue or assuage his pain.


    I'm sure that any improvement at all will be a welcome relief for Gareth. Please let us know how everything progresses with this.


    :hug-bear: :hug-bear:

  19. Amanda, darling, your contract is not for eternity! You know we can't get enough of you, or any of our other fabulous volunteers, so the fine print says eternity "plus one". I'm uncertain if that's an invitation for Michael as well, or if it stands for plus one more eternity or what.


    I will send it to committee to sort that out. Which in org-speak means that you'll be waiting for the answer for an eternity....plus two!

  20. Hi Mothergoose,


    I'd highly recommend that you see your doctor right away regarding your medication concerns. Winging it can be dangerous. Bear in mind that nobody ever "wants" to take any medication, so you don't have any special corner on that market.  But what you want, and what your doctor wants for you as well, is to restore as much function as possible, under the circumstance of illness.


    It is especially important to keep Raynaud's under great control, because each episode is probably worsening the disease process. So by avoiding attacks (through medication or lifestyle changes or both combined) you might actually be improving your overall health, and most especially, sidestepping problems such as ulcers and amputations.


    It's a constant battle for all of us, though, as to weighing the medication versus its effectiveness versus its side effects!  Our doctors are there to help us manage that process. Also, some medications do only build up slowly and many need to be discontinued very slowly, lest even worse side effects occur.  This is the time to lean on your doctor and work very closely with them.


    A point that I understand nearly nobody gets until it is too late, is that doctors can and do rate patients as to whether or not they are "compliant".  Compliant doesn't mean doing exactly everything they suggest, but it does mean following agreed-upon treatments to the letter and discussing any proposed changes with them ahead of time.


    Should the time ever come when an enormously expensive, life-saving treatment might be called for, such as a stem cell or organ transplant, doctors take an extremely close look at whether or not the patient is compliant, and they have every right in the world, and typically use it, to deny such treatments if they feel there is a chance the patient might not follow aftercare instructions, which might entail studiously taking many medications with enormous side effects, dutifully completing every bit of physical rehab, etc.


    My late husband was extremely fortunate in that he had a sterling record of always following doctors orders, or discussing it with them whenever he wanted to have changes in his treatment made. So he absolutely passed the compliance test for his lung transplant.


    So I strongly recommend that those of us who might be faced with needing lavish treatments in the future be as compliant as we possibly can, so that we build up a reputation of being worthy of special consideration for priceless treatments. In addition to that, it is just a good health habit to discuss our medication pros and cons with our doctors and our pharmacists both before and during treatment.


    I have to admit that I have been noncompliant on a few things in the past, when it made good sense to me and when I knew for a fact there would be no adverse effects from stopping the meds. And I made a full confession at my next medical appointment. I must say, most doctors figure, if we were able to go off a medication and are happy about it, then they are happy about it, too, as obviously it either wasn't a very bothersome symptom, or the side effects outweighed it, so it's not like you can typically expect a lot of push-back on it.


    So we can provide some input, maybe helpful or maybe not, but the real discussions need to be between you and your doctor.  Remember it is okay to ask your doctor for permission to experiment with dosages!  I have had permission for variances, within certain parameters, for many medications, and I will often discuss in advance what I should do if I want to discontinue a medication.


    Nobody wants to take any medication (if they are in their right mind), but nobody wants to be sick, either!  You didn't volunteer for this but you need to either accept some symptoms or treat them, there is no option for magically reverting to pure health, unfortunately.