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Shelley Ensz

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Posts posted by Shelley Ensz

  1. 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.)



  2. 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.



  3. 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.



  4. 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.



  5. 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!



  6. 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.



  7. 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.)



  8. Hi KTerrell,


    Welcome to Sclero Forums. It's good that you are trying to get answers for your symptoms.


    Generally speaking, whenever Raynaud's onsets in adulthood, it's my understanding that it is a good idea to request a referral to a rheumatologist for evaluation, to monitor or check for any underlying or associated disease. (Bear in mind, of course, that I'm not a doctor and have no medical training at all.)


    Popping noises from joints are okay/normal and get worse as we age (provided you don't have an injury that is causing it, of course.) Rashes aren't so typical of scleroderma, but are perhaps more likely with other autoimmune diseases or allergies.  Skin changes should also be checked out, and you might also find a visit to a board certified dermatologist helpful (on top of a rheumatologist or scleroderma expert), because of the rash and changes you've noticed. Particularly screen them so you find one interested in skin diseases, since many specialize in beauty procedures.


    Please keep in touch, and let us know how things go for you.



  9. Thank you for leading our Skype chat initiative, Jo! 


    For those who are considering this, I'm very fortunate to be able to Skype with Jo regularly.  Skype video chatting is very easy, and typically free, even internationally. It's a wonderful way to get support for scleroderma, and Jo is looking forward to meeting more of you "in person" via Skype.  Each session is limited to only the first few who register, to keep things manageable, so you don't need to worry about being overwhelmed, either.



  10. Hi Amanda,


    What a fun topic you started! 


    I just want to add, that no matter what you decide to use on your face, consider protecting your hands from it, because your hands are severely affected by scleroderma so the skin may react differently than on your inner elbow or face.  If you can't get protective gloves on, you could consider using some clear food wrap to shield your hand.


    Good luck, and let us know how things go.


  11. Thanks for this article and for all your fantastic news-gathering, Jo! 


    I think this article is particularly interesting, in that they expected that people who gradually quit would be more successful than people who quit cold turkey.


    As a former smoker, having finally quit about 20 years ago, I earned my chops by quitting in a thousand different ways. I quit hundreds of times, including many attempts at tapering, cold turkey, classes, patches, pills, and promises and pacts with fellow-quitter-friends. I threw out partial packs, full packs, even whole cartons of cigarettes in absolute desperation. I can't even count the times I went through withdrawal. I was very addicted, physically and psychologically.


    The most interesting part of this article to me was that the success rate for a single attempt of quitting was so low.  I think many of us have to quit, and keep on quitting, and just don't give up on trying to quit, until we finally manage to get it right.  For anyone out there who is struggling with quitting, I say:  try again!  Maybe this time you'll garner all the right resources and attitudes. Maybe this time you'll make it over the hump. Maybe this time you'll succeed in your goal to only inhale fresh, restorative, pure air. Maybe this time you can actually let it go, and let it let you go. Maybe this time, you can be free. The only failure in quitting is when we fail to quit trying to quit!



  12. Hi RM6,


    Altogether, it probably wouldn't hurt for you to consult a scleroderma expert. They could figure out if you have "only" morphea or if perhaps you also have an overlap of some sort. They could make sure you have baseline tests done, and determine whether or not you need any treatment.


    After all this time, it is quite likely that your morphea is "burnt out", meaning that it has quieted down and isn't getting any worse. It's normal for that to happen in two to five years for most people, even without any treatment at all. And only very, very rarely does morphea ever co-exist with systemic scleroderma, from zero to 4% of the time, depending on the study, and although many scleroderma experts claim never to have encountered such an overlap, we do have Amanda here, who has both types of scleroderma at once.


    An interesting thing is that they can run a blood test, as people with morphea who have anti-centromere antibodies are the ones most likely to develop systemic.  Also, about 25% of people with morphea develop one or two symptoms beyond just skin involvement. It doesn't mean that they are developing systemic, but just that their morphea affects more than only the skin. See Morphea Scleroderma on our main site, for more information.


    Please keep in touch, and let us know what you find out.



  13. Hi Dimarzio,


    I hope you get some of your test results soon, and perhaps the monitor or MRI will provide a path forward for appropriate treatment. But if they don't, keep pressing for sleep disorders testing. It's just not right, to not sleep right, and we all need as much in our favor as possible when dealing with chronic illness.



  14. Hi Dimarzio,


    I'm glad you've found some relief with pregabalin. I'd like to note for others, and as a disclaimer, that it is generally prescribed to help with neuropathic pain, or fibromyalgia. It is in a class of drugs called anticonvulsants. It can have some very serious side effects and the dosage should never be altered, or stopped, without consulting a doctor.


    As it happens, people who are not typically sleeping soundly for a normal amount of time every night, and awakening refreshed, should seriously consider sleep disorders testing and possibly even neurological evaluation. Inadequate or poor quality sleep is very hard on the immune system. Additionally, scleroderma is also associated with several sleep disorders.


    Coping well with chronic illness requires good sleep hygiene, nutrition, and stress reduction -- all of which are challenging to achieve at best, not to mention, when we are tired and stressed!


    Anyone reading this thread who is not sleeping well and feeling refreshed, in general for over two weeks (with or without scleroderma), should ask their doctor to evaluate them for a sleep disorder. This typically requires sleeping overnight in a sleep facility and being monitored while sleeping. It can detect things like insomnia, depression, restless legs syndrome, and sleep apnea.  Once the problem(s) are identified, then the appropriate therapy can be used.


    Meanwhile, anyone who is significantly sleep deprived should avoid driving or operating machinery, as sleep deprivation can be as hazardous as drunk driving. See Neurocognitive Consequences of Sleep Deprivation, and Sleep Disorders and Scleroderma. With insufficient sleep, we are subject to "microsleeps".  See Microsleeps: 30 Seconds to Catastrophe.


    I hope that with some good treatments and evaluations, you will continue to feel better, and more functional, soon!



  15. Hi Keelton,


    I'm sorry, I just realized this post had been overlooked, although we've probably answered some of your concerns in other threads.


    As it happens, I think one of the major concerns for nearly all of us in this forum is dealing with fear of the unknown. It's something that binds us together, even if we have different symptoms or different types of scleroderma. Figuring out how to live happily and successfully today, despite whatever we are already dealing with, and concerns over what symptoms we might yet develop, is extremely important. Making a good adjustment to uncertainty, and overcoming anxiety, are vital coping skills that will serve us well in all areas of life.


    I'm delighted that you are taking care of yourself by seeing a psychologist and taking medication. Think of this ordeal as being a fine opportunity to learn how to deal with uncertainty. It's quite possible that all of your concerns will amount to nothing at all, and you will hugely regret having spent a single moment consumed with worry. Then again, maybe something worse will befall you eventually (in the end, we all, inescapably, die, whether we are healthy or not at the moment), and then you may regret any time spent dreading the inevitable.


    Facing our fears straight on, and dealing with them, can pave for the way for a life filled with as much happiness and joy as possible. And, it is definitely possible to live with scleroderma with happiness and joy!  So work with your psychologist to turn off the recordings that say this is horrible and hopeless. It is not!  Learn and reinforce new thoughts, such as, you are capable, you have support, you can find joy and love and laughter, and create an attitude that is bigger than whatever you are facing at this moment.


    You can do it!  It won't necessarily be easy. It will take a lot of determination and effort. But you can face this uncertainty, and learn to live with it, and just accept it and not fight it every second of the day. Kudos to you for realizing its an issue worth dealing with. And remember, we understand, and we are always here for you. And, in a short while, you will probably feel bolstered enough to become the shoulder that is also there for others to lean upon.



  16. Hi Kristyn,


    Welcome to Sclero Forums!  I'm sorry you have morphea, but very glad that you've found our online support group. UVA1 Phototherapy is the first line recommended treatment for it, and shows excellent results overall, so you may want to look into it at your nearest opportunity.


    As it happens, during the inflammatory stage of skin disease, it can cause itching. What's the weirdest of all is that the itching can occur even before there are any outward, visible signs of disease. For many of us, that itching seems to be worse at night, perhaps for a variety of reasons.


    Sometimes morphea can burrow deeper into the underlying tissues, and raise some havoc. Plus, anyone can get sciatica, even without morphea. The important thing is to treat it, typically with physical therapy, until you find methods that relieve the pain. 


    Please bear in mind that I am not even medically qualified to trim a hangnail.  That said, I have an unusual approach to dealing with incessant itching. That is, I apply one of those hot/cold arthritis lotions, or an ice pack, at the back of my neck. Our body processes pain from the bottom up, so it will feel the pain nearest to the head, first.  By giving it the hot/cold lotion or cold pack as it's "pain", then the brain has trouble processes any more pain signals and thus I experience the intentional self-inflicted (but harmless) hot/cold pain, which stops me from itching (which always makes any skin lesion worse, sometimes terribly worse or even infected.) 


    Also, avoiding soap as much as possible and taking baby oil baths can help. See Scleroderma Skin Involvement: Itching on our main site.



  17. Hi Keelton,


    In my personal non-medical opinion (and keep in mind that I don't even have a valid First Aid Certificate), most health problems are likely to either stay the same or get worse during pregnancy, and not magically evaporate.


    It's probably borrowing trouble to be concerned about it at the moment, when the very first order of business should be to consult a listed scleroderma expert. They could discuss whether you may have early scleroderma, or your odds of developing it, and the considerations for pregnancy in your particular case.



  18. Hi Keelton,


    With suspected autoimmune disease, you should consult your rheumatologist or scleroderma expert prior to becoming pregnant. There are many things to consider, such as timing in regard to flares or remissions, medications to avoid or discontinue, and discussions about the potential affect on the mother and the fetus. With careful planning, there are often successful outcomes -- it's the lack of careful planning that can be problematic or even life-threatening in some cases.


    See our guide to Scleroderma and Pregnancy. And, if you haven't already, it would be a good idea to consult a listed scleroderma expert. Bear in mind that diagnosis takes an average of six years in the U.S. (which just shouldn't be, and there is now an effort underfoot to diagnose scleroderma sooner, but it will likely take years for that to actually catch on among the non-experts). But part of the problem is that autoimmune diseases often develop very slowly -- which is a great thing from the aspect of not getting overwhelmingly sick right away, but a bad thing in regard to not having answers right away, either.


    What could matter for you is whether any treatments you could have for dysphagia could/would adversely affect the fetus. Dysphagia can often be managed with some lifestyle changes, like eating slowly, sipping fluids, avoiding difficult foods, favoring easier foods like smoothies or soups, etc.  But I guarantee you won't regret raising the question with your rheumatologist ahead of time so that you can make the best possible decision.

  19. Hi Keelton,


    Welcome to Sclero Forums. I'm sorry that you have esophageal dysmotility, and send my best wishes to you. Even without a distinct diagnosis yet, it would probably be a good idea to be seen and monitored by a scleroderma expert. That way, you can know that a complete evaluation is done, and that any associated disease can be detected as soon as possible. Also, they can be a wonderful help in managing esophageal issues. 


    Esophageal problems are common in scleroderma, but range in severity from very mild and intermittent to very severe, so you will always hear a chorus of "everyone's different!" around here. Whereas I know, you just want to know what to expect, and what's in store for you. Yet unfortunately none of us have a crystal ball for that. Mostly with issues like this, the real challenge becomes learning how to live with uncertainty. 


    I have only mild and intermittent trouble swallowing, but even the slightest trouble swallowing is very impressive at the time it's happening. I've learned that I have to eat slowly, chew well, always have a liquid at hand, and pay attention. I tend to run into trouble more when I'm eating out or with others, as I can get distracted, forget to be cautious for a second, and there we go again. Once I realized that connection, I became more alert, and that sure helped avoid issues. Also, I found I need to tilt my head slightly forward, not backward, to swallow and to take pills, especially. It's a bit counterintuitive, you'd think it would be putting your head back that would help.


    Liquids are often easier to swallow for people (I have the most trouble with dry foods that I haven't chewed well). I've had throat spasms from ice cold food before (too much, too fast, too cold), so consider that the temperature of the food might sometimes be an issue and adjust accordingly. You can also work with a dietitian to design nutritious meals that work around this issue. For example, a smoothie for breakfast might be much better than Melba toast.  Making any soup, but then blending it at the last minute, removes perhaps troublesome chunks but saves all the nutrition. 


    There are entire cookbooks for people who need or want to be on liquid diets. Tubal feeding is an eventual solution. We've had a few members who absolutely thrived on tubal feeding, feeling like it gave them their life and energy back. One of my friends was able to return to work full time, and another one, with a wicked sense of humor, started her own radio cooking program. So there is definitely a path forward for you, but it will still be an unavoidable adjustment phase, anyway.