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Shelley Ensz

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Posts posted by Shelley Ensz


  1. Hi Cathy,

     

    Ir's common for scleroderma to stabilize, so it's usually safe to figure that if it's not progressing, then it's probably stable or even improving. The only caveat is, never skip your recommended follow-up appointments just because you feel fine, because occasionally some things can progress silently. So, overconfidence is silly with this disease, but I doubt that will be a hazard for you.

     

    Ask your doctor what symptoms you can safely ignore, and when you should seek medical care. Our hearts are supposed to beat hard and strong under some conditions, like exercise or anxiety, so it's more a matter of what is in the realm of normal for you, with all your conditions. 

     

    You may even want to see if you are eligible for a cardio rehab program, where you can safely build exercise tolerance while being carefully monitored. Its very easy to get frightened from heart problems, and then avoid doing things that will make them stronger and healthier. It's good to relax and truly enjoy the pleasant spells when symptoms relent a bit.

     

    :hug-group:


  2. Hi Kathy,

     

    I'm very sorry to hear that, for both of you.  Perhaps it will take a little more time...or perhaps its time to move on.  At least you'll have the confidence of knowing that you tried your best and did everything you could, on your end.

     

    Quite often, our best just isn't good enough, or it's only good for just so long. Even the rich and famous and wealthy and healthy often suffer relationship difficulties, so imagine the stresses for those of us who aren't rich and famous and wealthy and healthy.

     

    I wish I could comfort you. How about a great big warm hug?

     

    :hug-group:


  3. Hi Ralph,

     

    Your symptoms would definitely be something to see your doctor about. Usually facial sagging is due to other things, such as a stroke or Bell's palsy.  If it was scleroderma, such as en coup de sabre, the onset is typically a slow and progressive development.

     

    In any event, please see your doctor, and let us know what you find out.

     

    :hug-group:


  4. Hi Cathy,

     

    Generally speaking, if you are wondering if you are improving with treatment, look to your symptoms for the answers, and not to lab results.  Blood tests can be erroneous (up to 20% of the time) and even misleading sometimes (indicating you are either better or worse than you actually are.)

     

    Look at the really big picture, such as how you felt overall before you started treatment, how you think you'd be doing without any treatment at all (if you were on a decided downhill slide beforehand), and how you're doing now.

     

    We tend not to notice things like a disease that has stabilized, or that has quit progressing, because we want to be restored to perfect health. So it is easy to look a gift horse in the mouth when it comes to treatments, and to be a bit unaware of how they have truly helped.  And then again, of course, some treatments just don't help at all, the side effects are worse than the disease, and they need to be stopped.

     

    How do you assess things, apart from the lab work?

     

    :hug-group:


  5. Hi GJG,

     

    Welcome to Sclero Forums. I'm sorry you have scleroderma, that it has onset so quickly, and disrupted your life and livelihood so fast.  It is an enormous adjustment to make, in a short period of time, as I'm sure you're realizing.

     

    As Jo suggested, seeing a (real, listed) scleroderma expert is the first thing to do. You'll feel a lot better just having them to answer some of your most critical questions, and to guide your care with state of the art advice. They are typically great at working along with your local rheumatologist. It will also give you access to any clinical trials you might be qualified for.

     

    It's too much to take in all at once. All of us have felt overwhelmed at first by scleroderma, even without any medical training at all. You'll have a tiny bit of advantage, at least being familiar with the terminology.

     

    From the "when life hands you lemons make lemonade, and lemon cookies, and lemon pie" school of thought....Scleroderma can also affect the mouth, so perhaps down the road you could help expand our resources on Scleroderma Dental Involvement. Very few dentists are interested in this realm (because it is so rare) so any documentation or awareness raising you could do on this score would be greatly appreciated! 

     

    :hug-group:


  6. Hi Sugarplum Fairy,

     

    Pulmonary fibrosis shows up on x-rays and CT scans of the chest, which either show inflammation (the ground glass that Jo had) or fibrosis (hardening) of the lungs.  If it is caught in the inflammatory stage, like Jo's was, it is treatable. 

     

    Skin sensitivity and calluses are not symptoms of scleroderma. Although a callus is a type of skin thickening, it is different than the hardening caused by systemic sclerosis, which is preceded by swelling and then gradually hardens into a smooth and shiny appearance, typically starting in the tips of the fingers and moving upward from there.

     

    As I understand it, the hand pain with scleroderma is most prominent during the swelling and inflammation stage. Offhand, I don't recall hearing anyone complain of significant hand pain for a long time prior to the onset of other symptoms (like swelling, Raynaud's, carpal tunnel, etc.)

     

    For ANA, a speckled pattern is much more common in lupus, whereas scleroderma tends to be more of the nucleolar pattern. But keep in mind, blood work can be false positive (or false negative) so it is the specific, proven symptoms that are paramount in diagnosis of connective tissue diseases. About 3 to 15% of healthy people have positive ANA, so the presence of antibodies does not guarantee the presence, or eventual development, of disease.

     

    :hug-group:


  7. Hi Sugarplum Fairy,

     

    Welcome to Sclero Forums. I'm sure you know by now that we aren't doctors, and the vast majority of us, including me, don't even have a valid first aid certificate.

     

    I'd refer you to our resources on Difficult Diagnosis, which includes videos and symptom checklists. But, without having any Raynaud's or tight skin or pulmonary fibrosis, etc. your odds of having scleroderma are probably slim to none.

     

    Since you do complain of some eye pain and some joint pain, and positive ANA, you might be tending towards some Sjogren's symptoms.  Bear in mind that about 50% of people who have a few symptoms of connective tissue diseases and positive ANA never go on to develop a full blown version of anything, so your diagnosis might always remain as being simply "arthritis".

     

    As to whether you are worrying too much, well, that really isn't a question for us. What they recommend is that if we are very bothered or upset for two weeks after receiving a serious diagnosis, or the worry of one, then we should ask our doctor about it. Anxiety and depression can emulate and complicate many illnesses; depression can even cause joint pain, fatigue, and troubled sleep. Anxiety can ruin our quality of life. And all unnecessarily, since at least those aspects of illness are treatable.

     

    Basically, most people might be able to say, huh, I must have some mild form of arthritis, so I'll have an annual physical so that they can keep an eye out for any internal organ involvement. If your reaction is more than that, then worry can exacerbate symptoms, so acquiring some additional coping skills could help regardless of whether your symptoms ever worsen, or not.

     

    Time will tell what's going on. If I recall correctly, Sjogren's usually takes an average of ten years to be diagnosed. That's because symptoms are generally fairly mild, slowly progressive if at all, and usually easily self-treatable, such as by eye drops or moisturizers or NSAIDs. One thing you could do for that is to have your eye doctor do a Shirmer's test for dry eyes. It's painless and is not invasive; it's just a tiny bit of paper put in the eyelid for a few minutes to see how wet the paper gets. Flunking Shirmer's isn't fully diagnostic of Sjogren's, but it is one little piece of the puzzle.

     

    Worrying or excessive doctoring isn't very likely to speed up the process, in fact, it can entirely derail it if your doctors tag you as (an untreated) worrier, they may dismiss all your symptoms, or figure that you are exaggerating them. So, the more you can prove you have your emotional reaction under control, the better.

     

    Also, cut yourself some slack for being suspicious and concerned and for trying to get answers. It sounds like you and your doctors have ruled out any imminently life-threatening illness, as you are not complaining of heart, lung, kidney or liver involvement, nor signs of pervasive cancer, and you can even safely rule out rapid onset of severe diffuse scleroderma, too. 

     

    So, although some arthritis may be setting in -- which is a pity, of course, but it is usually quite manageable -- you are joining a crowd of millions and mlliions of people worldwide in that regard, so hopefully you will not feel quite so alone in the process, and quickly find your stride in coping with it successfully. At least, we all surely hope so!

     

    :hug-group:


  8. Hi Jeremy,

     

    Welcome to Sclero Forums. I'm sorry you have scleroderma, and pancreatitis.

     

    Pleae keep in mind that I'm not a doctor, and I have no medical training at all. How I'd look at this is, that you are doubly susceptible to alcohol triggering another round of pancreatitis, because then you'd have two triggers at once, both scleroderma and alcohol, and together, your risk for recurrence might be through the roof.

     

    Alcohol can also be hard on the liver and kidneys, which are also at risk with scleroderma -- in two ways, actually. One is that scleroderma may affect them, and another is that the various medications you need to take now -- or later -- may also stress the liver and kidneys. 

     

    If despite the risks, if you still choose to drink, you may want to consider moderate consumption of red wine, which may help to reduce attacks of Raynaud's, according to some studies. But alcohol, nicotine, and caffeine can all trigger or worsen Raynaud's, so consider what your own reaction is. With digital ulcers, you run the risk of amputation, and that could take all the fun out of a social drink or two.

     

    With the increased risk to your pancreas, liver and kidneys, you may want to discuss the whole matter with your scleroderma expert.  It's not giving up or giving in or succumbing to the illness to try to make the wisest decisions to live longer or healthier. Sure, a drink or two may be enjoyable, but organ failure could possibly take some of the fun and length out of life, too.

     

    Do take a moment to ask yourself if you might be trying to "use" alcohol in any way, such as for a painkiller, a sleep aid, or to try to avoid issues, such as declining health. It's easy for all of us to misuse alcohol as a crutch.

     

    I've found that reliable sober drivers are always in demand socially, so bypassing alcohol seldom puts a real dent in our fun.

     

    :hug-group:


  9. Hi Alone,

     

    Welcome to Sclero Forums.  I'm sorry you have confusing symptoms and diagnoses.  It's actually fairly common for lupus and scleroderma to occur in overlap, or for either disease to occur in overlap with other diseases.  It's common for both diseases to take many years to be diagnosed, and for them to also be mistaken for each other, too.

     

    I have multiple autoimmune syndrome (MAS) so I know how confusion can reign supreme as symptoms and bloodwork change. It's also common for relatives of people with autoimmune disease to exhibit antibodies and symptoms of any autoimmune disease, without necessarily ever getting a full-blown version of it.

     

    You're not exactly alone in the universe anymore, since millions of people worldwide have autoimmune and connective tissue diseases, and millions are also in a quandary as to their diagnosis -- typically, for many years, as the ailments are so difficult to sort out and diagnose. Plus, even years later, the diagnosis can still be subject to change, or even for the illness to go into remission.

     

    Anyway, welcome to the forums. You can relax now, not feel so alone, and let go of the confusion. It's normal for this to be confusing and neither you nor your doctor are doing anything wrong.

     

    :hug-group:


  10. Hi Wilson,

     

    I'm sorry you also have diastolic dysfunction. It's one of those things that is quite common, in that a Mayo Clinic study showed that 21% of people over age 45 have it; and, it can also occur in scleroderma (which is a more rare cause of it, because scleroderma is much more rare, of course.)

     

    It's a good thing to get diagnosed, and to take proper care of. It can be caused by coronary artery disease or by hypertension so those factors are often treated with blood pressure medications, diuretics, and sometimes even aerobic exercise to improve heart function. Keep on working with your cardiologist, of course.

     

    As I understand it (and I am not a doctor; I have no medical training at all), there is no different treatment for it, even if scleroderma is an underlying cause.

     

    I know how you feel about not wanting to have any particular diagnosis, but being glad to have any accurate diagnosis. Simply because, it's accurate and true!  And who knows, maybe someday various things may help solidify an umbrella diagnosis.

     

    :hug-group:


  11. Hi Kathy,

     

    I've never heard of a caregiver pact, so I don't know what you mean, exactly.  Do you mean like for the care of children?  Most issues surrounding death could be handled in a will or a Living Trust, including arrangements for children or pets (if necessary).

     

    I agree with Amanda. It it's possible, you may want to consider the idea of not trusting this situation to antidepressants alone. If it's possible to include individual and joint counseling, that might maximize the growth and happiness out of any disruption. It's nice for things to be a bit better now, but it'd be fabulous for things to still be going strong ten years from now, as an outgrowth of this period of reflection and change.

     

    Oh, and there is one thing I'd like to add, if you don't mind. The usual marital pledge is "for better or worse, in sickness and in health, til death do us part", because nearly all of us get sick, and none of us get out alive.

     

    All of us are going to get sick or die someday. Your husband could be run over by a truck tomorrow, for all we know -- and you hardly deserve that, do you?

     

    It's for that reasoning that I personally would prefer not to ever give nor accept blame for being sick. I like to turn to good counselors when I can use gentle guidance to resolve issues like that. Sometimes a fresh perspective can assist with introducing more acceptance, peace, love, joy and happiness, at least, in my experience. And you certainly and richly deserve that, after all you've been through!

     

    :hug-group:


  12. Hi Wilson,

     

    I do know, in many ways, what you are feeling, as I've suffered extremely delayed diagnoses over the years. Several times, I've felt completely exasperated by it.

     

    At one point, I read that about 40% of lupus cases were diagnosed by autopsy. I really don't know if that is true or not, as I haven't found that reference since.  What I do remember though is that I adopted as my slogan, "I refuse to be diagnosed by autopsy!"  Sometimes that rallying cry was the only thing that got me out of bed or gave me the courage to face yet another test.

     

    It's taken literally a lifetime for me to be mostly diagnosed, as I have multiple autoimmune syndrome (MAS) with all sorts of overlaps, which has been endlessly confusing both for me and my doctors.  So, on that hand, I know how extremely difficult some autoimmune diseases can be to get properly diagnosed.

     

    On the other hand, my late husband had a variety of things that emulated scleroderma, yet beyond the shadow of a doubt he did not have scleroderma or any autoimmune disease. He had alpha-1-antitrypsin deficiency (A1A) which caused him to have severe lung problems at a young age. Eventually he had a lung transplant. 

     

    So he was on oxygen for many years. But other than that, he also had severe esophageal ulcers and strictures, and had to have his throat stretched regularly. His heartburn was so severe that he had to have Nissen Fundoplication surgery. He had severe sleep apnea; costochondritis; atrial fibrillation; short-term insulin dependent diabetes from prednisone; osteoporosis; recurrent cellulitis; collapsed lung; ruptured Achilles tendon; and even Dupuytren's contractures in both hands.

     

    Everything other than the lung involvement was due to either the usual effects of aging or the side effects of medications. There was absolutely nothing (other than A1A) systemically wrong with him, and I can assure you that every test known to man was run prior to his transplant.

     

    So it's kind of funny. People can have only a few little things wrong with them but clearly have an autoimmune disease but a rosy prognosis, yet others can have dozens, of things wrong with them at once and not have any underlying disease process that is driving it -- other than aging, which is a mighty adversary all by itself, never to be underestimated.

     

    Please keep in mind that it is NO LESS SICK (and certainly, no less important) to have symptoms without a cohesive underlying illness, than it is to have the same symptoms without such an illness. Maybe the prognosis is sometimes better for people without an underlying illness. But all of us, healthy or not, have one thing in common which is that we suffer from a condition called Life, which is always, and inevitably, and unpredictably, fatal, whether by disease or accident or foul play.

     

    I suppose in the end, all of us actually get our final diagnosis by autopsy. But oh, so little, and so absurdly late!  It is today that we wish to know exactly what ails us, so that we can thus try to thwart our final diagnosis by a few days or weeks or months or years with proper care.

     

    Hopefully through our Sclero Forums, we will all find the strength to face another day with courage, with grace, with laughter...whether with or without any particular diagnosis at the moment, knowing that we all share the prognosis of Life together, along with all of its joys and blessings, and uncertainties.

     

    :hug-group:

     

     

     


  13. Hi Wilson,

     

    Welcome to Sclero Forums!  I'm glad you found us for support as you continue to deal with the question of whether or not you have an underlying disease that is causing your symptoms.

     

    Please keep in mind that I'm not a doctor, in fact I have no medical training at all, and verify everything I say with a reliable medical source.

     

    As it happens, about 50% of people who have a symptom or two of connective tissue disease (CTD), or even some antibodies too, never go on to develop a full-blown diagnosable CTD.  Also, with age, we can all acquire a variety of symptoms as our bodies inevitably display the effects of wear and tear (whether or not we have an underlying illness.)

     

    It does sound like your doctor is taking your symptoms seriously, and running appropriate tests. Scleroderma would be only a rare cause of diastolic dysfunction. Dehydration can cause thirst as well as worsen kidney levels, so please make sure you stay well hydrated (but not over-hydrated, of course).  And be sure that you have regular screenings for diabetes, which can emulate scleroderma in many ways (including the face swelling and thirst.)

     

    A scleroderma expert might be able to help you sort things out, as in tell you whether you have scleroderma already or tell you what the odds are that you may ever develop it...or perhaps even see what else it may be, if it is anything beyond the scope of normal aging (which can raise all sorts of havoc, all by itself!)

     

    :hug-group:


  14. Amanda, you've totally cracked me up, yet again! :happy:

     

    Miocean, I hope you get to another waning then plateau stage again soon!

     

    I've experienced the waxing and waning myself, sometimes just through the natural course of the disease itself, and sometimes through various treatments. It's an emotional hurdle to leap across, each time we encounter the waxing bit again. It's such an uncertainty, knowing what it was like when it worsened before, wondering if this is going to be the final downturn, but also knowing that things -- a few symptoms, or all -- could improve at any moment. That's what makes scleroderma such a roller coaster ride, and while not exactly thrilling, it is certainly enough to make us want to scream at times, isn't it?

     

    I'm glad we have each other, for comfort when the going gets tough or tougher, and for rejoicing together when things get a bit mild or milder. Fasten your seatbelt, follow expert advice, enjoy life as much as possible plus a bit more than that -- and then hang on for dear life, for scleroderma may be an interesting ride, but very seldom is it a boring or easy one!

     

    :hug-group:


  15. Hi Judy,

     

    I'd recommend that you advise her to consult her scleroderma expert about this. In scleroderma, the immune system is in overdrive (as opposed to AIDS, in which it needs to be boosted.)  So the goal in scleroderma is typically to regulate the immune system, which often requires immune suppressants.

     

    Exercise has been shown to increase inflammation in systemic sclerosis, so a health kick that entails excessive exercise could provoke rather than ameliorate symptoms.  See Exercise in systemic sclerosis intensifies systemic inflammation and oxidative stress. PubMed, Scand J Rheumatol, 2010;39(1):63-70.

     

    However, some "health kicks" may be beneficial, such as adopting an anti-inflammatory diet. It's great that she wants to take responsibility for her health and is willing to exert effort on it!  However, hopefully some of that effort will also entail consulting and listening to her scleroderma expert, as well. See Diet and Systemic Scleroderma and Supplement Guide for Systemic Scleroderma on our main site.

     

    :hug-group:


  16. Hi Kathy,

     

    Yes, you may share the link to our Hope on the Horizon video or to any of our pages, anywhere. The trick is to just include the link and to attribute the link to sclero.org or the International Scleroderma Network (ISN).

     

    That video is very special to me.  The scenery I used is from our old family cabin on the lake. The poem is by Fran Waranius who felt inspired by the SD World website that Judy Tarro had created.  Fran and Jude have both passed away.  Jude was also a volunteer for the ISN, and a member of Sclero Forums as JudeTheGrouch, literally up until the day she passed away. She donated her lovely SD World website to the ISN when she passed away.

     

    This year, Jo Frowde has been updating and revamping the SD World website as part of her webmaster training program with us. Recently she redid all the pages for Don and Karol's cross country tripKarol was the original penguin mascot for our Scleroderma Webmaster's Association (SWA) and that link includes photos of Fran and Jude and Syl, even me.  Some people here may still remember my speech at the first SWA meeting. In the middle of my speech, Don's service dog, Brandy, was kidnapped by a penguin, and held for a ransom of chocolate for the whole audience!  

     

    Karol and Brandy have since passed away, as well, so Don's heart was warmed by the effort Jo undertook to revive the trip section of Jude's site.

     

    Syl would be delighted for you to use her poem for your Father's Day card. (Also see: Syl's Poetry on our main site.)

     

    :hug-group:


  17. Hi KTerrell,

     

    It would probably be a good idea for you to consult a board certified dermatologist to diagnose your skin lesions. They could possibly be telangiectasia.

     

    As it happens, scleroderma is only a very rare cause of telangiectasia, which can also be caused by things such as aging, alchoholism, pregnancy, rosacea, steroids, and other connective tissue diseases like dermatomyositis and lupus.

     

    So, for a scleroderma diagnosis, telangiectasia are only "counted" when they occur on the hands and face, and when they are combined with other significant and specific symptoms of scleroderma (such as tight skin, pulmonary fibrosis, Raynaud's, etc.).  See Telangiectasia, and Diagnosis of Scleroderma.

     

    The good news is that skin telangiectasia are harmless, and they can also be treated by dermatologists if they are bothersome or too noticeable. Since you report having recent adult onset of Raynaud's as well, it would be a good idea to be screened by a scleroderma expert to see if you have possible early scleroderma. 

     

    But I must warn you that it is still an average of six years for scleroderma to be diagnosed (from the onset of symptoms in women; three for men), and even though there is an effort afoot to diagnose scleroderma earlier, it is very far from pervasive and the majority of doctors are likely unaware of this effort.  The old school method was to postpone the diagnosis for as long as possible, and only treat the symptoms as they arise, because it was considered to be an "adverse diagnosis".  So, it is still the norm to just be monitored periodically, until or if other significant symptoms of connective tissue diseases develop.

     

    :hug-group:


  18. Hi Ivybennett,

     

    Welome to Sclero Forums. I'm sorry that you have multiple sclerosis, and onycholysis (the formal name for nails separating from the nail bed.)

     

    As it happens, it's very odd that your doctor would suspect scleroderma, based only on that. It would be far more commonly caused by trauma, tapping on keyboards, manicures, soaking hands in water too long, fungal infections, psoriasis, certain medications (especially some antibiotics), anemia, and hyperthyroidism.  And, as Jo pointed out, onycholysis is not part of the diagnostic criteria for any type of scleroderma (either localized or systemic). 

     

    Unless your doctor has additional reasons to suspect scleroderma (or lupus), I'm sorry they have put you through this worry, which is unnecessary in the absence of other specific symptoms such as Raynaud's, tight skin, and pulmonary fibrosis.  Of course, your doctor might be on guard because of your family history, and because very rarely, multiple sclerosis can occur in overlap. If this is just a single symptom, and otherwise you don't have things outside of MS, then I'd look in other directions for a cause of this.

     

    I have scleroderma in overlap, and I've had onycholysis, too (two fingers, one on each hand, at the same time) -- but it was chalked up to psoriasis (which I also have), and I seriously doubt that the thought of scleroderma as a differential was even briefly entertained. In fact, it never even crossed my mind, and it wouldn't have unless I was also having significant sclerodactyly and prominent Raynaud's attacks, etc. at the same time.

     

    Even in a person already diagnosed with scleroderma, it should still be the last culprit considered for any new symptom, because all the normal or more common causes need to be ruled out first. Often, more common causes are also more treatable.  Just think, this could also be a symptom of hyperthyroidism or anemia, both of which can also be associated with MS.

     

    If it's a one-time problem, I wouldn't worry about it, so much as if it recurs. But I'm not a doctor, I have no medical training at all, so you should absolutely bear in mind that your doctor is much better equipped to assess your health, and suspect and rule out various ailments, as we are here on the forums!

     

    I just want you to be assured that, if this is the only reason they suspect scleroderma (and I actually rather doubt it is in your case; I am aiming this at others who stumble upon this thread who only have onycholysis), it would be insufficient, by any standard that I'm aware of, which should hopefully set your mind at ease if or until any other symptoms outside of MS develop.

     

    :hug-group:


  19. Hi Miocean,

     

    I'm really happy for only one part of your situation, and that is, that you are posting here. We all really miss you when you are offline for any reason!  So come what may, good or bad or indifferent, please keep our connection as best you can. (And that goes for all our members.)  We aren't here only for the good times, we are here for it all, or what sort of support would we be?

     

    As you know, the natural course of scleroderma is to wax and wane. And wax and wane. And wax and wane. Like a roller coaster ride, with all the screams but none of the fun!

     

    Unfortunately, the waxing part brings with it all sorts of stresses, and stress exacerbates inflammation, and away we go again. I try to pick away at the stress, doing every tiny thing I can think of to reduce it, as I figure, even a 1% reduction will eventually hopefully add up to something. Capturing time for living, and enjoying, becomes increasingly difficult when we are sick, and that frustration adds to the burden of trying to deal with the never-ending rounds of hospitals and doctors and tests.

     

    You are doing absolutely marvelous to be hanging in there still, despite everything that you have gone through and are continuing to go through. Like you, I figure, the doctors and the treatments are just part of the equation for our well being. The other part is the tiny bits of goodness and little blips of joy and tiny dabs of happiness that we can work into our life, but we have to fight like crazy to find and get and cherish them, and they are so easily lost in the shuffle!

     

    I know you're doing all this list below, and lots more, but some of this could be fresh ideas to newbies who might begin experimenting with their own stress reduction techniques.

     

    This list is for anyone struggling with the waxing part of autoimmune disease, just notes from my own experiences of tiny things that have helped me, and I'm sure you, and others, will be able to add to it mightily!

     

    In keeping with our guideline to avoid religious connotations, here is my layman's version for ways that I try to reduce stress in order to reduce inflammation:

     

    1. Forgive everyone, for everything (but remember the lessons, and the people who are best to love only at a distance).  I pull up a thought of anyone or anything that hurt or angered me, face it squarely, offer the thought forgiveness, and watch it get tiny as dust and then blow away on the wind.  Some people or situations require multiple breezes, but that's just fine. It doesn't matter if it's from today or many decades ago. If it's there, if it's harboring resentment, it's impairing my stress level. That increases inflammation. So, away it goes! 

     

    2. Ask for my energy back. Okay, this one is weird. Sometimes the forgiveness thing doesn't work for me. Maybe I'm still too mad to really forgive, which is only human. Sometimes forgiveness is a process and requires time or counseling (even for me). So what I do then is, I picture the person or situation, and ask it to please "give me my energy back".  I don't care if the issue still exists or still needs resolution, I just need the energy back that it is absorbing.

     

    I imagine cutting the cord of energy between us that is draining me. I picture the energy being restored to me. It's amazing but then right away another person/issue will then pop into mind that is depleting my energy, so I will ask it for my energy back. I know it sounds beyond silly and not something to discuss at the dinner table lest people think you wear an aluminum hat, too. But you can quietly do it and nobody will know the difference.

     

    3. Find and do a one or a five-minute vacation, and take as many of them as you can cram into a day.

     

    For one minute, I do deep breathing or visualize my favorite relaxation picture. If you don't have one, you can borrow mine. I recall sitting under a birch tree, on a hill overlooking a lake.  I hear the waves lapping, and loons calling. I smell fresh wintergreen, moss, and pine. Each outgoing wave carries away one of my cares or fears or worries, and each incoming wave restores my hope, my peace, and my energy. Breathe in relaxation, breathe out stress. Breathe in fresh minty air, breathe out toxins. Breathe in calming waves, breathe out cares.

     

    I do small stretches when I'm waiting for things in the microwave. Neck stretches are the best for relaxation!

     

    Yesterday, I took off my shoes and walked barefoot in the grass for a few seconds and tried to crystallize the memory of it. Anything savored can be a mini-vacation -- even peeling a carrot or cutting an apple, if it is done slowly and attentively enough. So, I try to slow down and savor when I need to relieve stress.

     

    4. Make nice long lists of enjoyable things, or things I'm grateful for, to drum up more of a relaxation response. When I can't do anything at all, I can at least make a list or read the list of things that make me feel better. I find that if I put my mind to it, I can always do something on the list, even if it's just taking a nap, or having a cup of camomile tea.

     

    5. I find what makes me laugh the hardest, and seek it out in doses. I view laughter as a medical treatment and literally schedule it into my week (I prescribe a healthy dose, every other day, for myself), whether it's watching funny videos, reading a humorous book, hanging with a funny friend, or going to a stand up comedy show. Even forcing laughter, when there is nothing at all to laugh about, induces a relaxation response. I just try not to do that when other people are around. But laughter yoga is based on this premise, that it is not necessary to be inspired, in order to laugh and benefit from it.

     

    There now, I've exhausted my chipper little ideas for the day. It's okay to just laugh off this silly list.  I guess I just want to say, there are many times with illness when we can't do anything more medically at all, and neither can our doctors. But we can take many tiny steps to induce a relaxation response and that reduces inflammation, and also helps reduce attacks of Raynaud's.

     

    Plus, with illness, we need at least ten times more stress reduction than the average person, because there is no end to the stresses and some of them are on a massive scale, like you've continually encountered, Miocean. And you've set a fine example for all of us in overcoming one major hurdle after another. Even if it's just to explain your predicament on the forums, that's a great stress-buster, right there, and another wonderful method for letting go, too.

     

    None of win the mortal game of life, in the end, but many of us still manage to win it all along the way, like you, and the vast majority of our forum members, by basically letting ourselves feel defeated, from time to time, but not actually be defeated. Somehow we hoist ourselves up together and make it for another bit, as best we can. It's not over til its over, and we are entitled to all our feelings about all of it, along the way, and to share them here.

     

    Thank you for setting a good example for our other members, on the importance of sharing our journeys with each other, all along the way.

     

    :hug-group:


  20. Hi Peter,

     

    I missed your initial post, and just want to welcome you to Sclero Forums. It sounds like your appointment will be quite an adventure, so I hope it all goes smoothly!

     

    :hug-group:


  21. Hi Sierra,

     

    I thought you might be interested in this 2010 article posted in our forums, which is about tumeric (the Indian spice) delaying the progression of primary sclerosing cholangitis, in scleroderma patients.  See: Tumeric Delays Liver Disease Progression

     

    I thought it might help for me to point out that everyone in the UK can also post in our Main forum, unless you have a question specific to scleroderma resources/experts in the U.K.  And, everyone in the forums may also post in the UK forums, you do not have to be a UK resident to respond to messages here. Anyway, since this particular message could use larger exposure, to help discover other lSSc/PSC'ers, I'm going to move it into our Main forum.

     

    :hug-group:


  22. Hi Cathy,

     

    Welcome to Sclero Forums! 

     

    As it happens, we used to have a listing for South Africa, but apparently lost the listing somehow over the years. Yes, I found him. His name is Dr. David Gotlieb in Capetown, who is known online as "Drdoc".  If he's anywhere near you, that may be a resource to consider, as well as looking through our Scleroderma Expert World Listings.

     

    As you see, we have many discussions for skin care. My personal favorite is plain coconut oil, which I slather on before and after showers, and before bed. But any oil that you like and can afford is good. I just prefer to go straight to the "real" oil itself, without other added ingredients, and to shy away from hot water and most soaps, which can be very drying. I seldom even wash my hair, just skipping straight to the conditioner instead (this is gentler on the hair and the skin.)

     

    :hug-group:

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