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Shelley Ensz

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Posts posted by Shelley Ensz

  1. Jeannie, it is absolutely delightful to hear your update, and your ever-sparkling example of living life to the fullest with scleroderma, with courage and compassion, come what may.


    Congrats on the big 7-0!!!


    We are all grateful for the enormous contribution of time and caring and expertise that you have given our scleroderma community through the years. Thank you for being a beacon of light for us all...and also for your honesty in saying that some days it's just plain hard. 


    I know some newbies, especially, tend to think they are doing something wrong as they find many things to be disturbing and not exactly a tiptoe through the tulips experience, learning about scleroderma and learning how to live with it. Just knowing that we all find it hard sometimes is actually quite reassuring, when we are caught up in the middle of another adjustment. 



  2. Hi Kamlesh,


    As Dimarzio pointed out, gluten free can be quite expensive, if you aim to replace processed foods right away.  If you want to try it to see if you notice any changes, you could simply try eating only "real" food for awhile.  It's easier to simply cut out all processed foods than to read a million labels and angst over whether everything has gluten or not. Even frozen strawberries can contain gluten, if they use flour on the assembly line. I mean, who'd think?!


    So eating any real, unprocessed foods is usually a lot safer and a better trial.  Such as any real fruit, vegetable or protein in its original form (not canned or frozen or processed in any way).  Even spices can contain gluten (is that crazy, or what?), so using the simplest spices and fresh herbs can help.  Gluten can also show up in drinks, making pure water an easy choice during the trial period.


    If you begin noticing any improvements, then it's time for a medical consultation. You might need to be tested for Celiac disease before going gluten-free any longer. It's important to know whether it is Celiac or "plain" gluten sensitivity, because Celiac disease also confers other risks for continuing gluten consumption of any sort, such as lymphoma.


    I noticed some health improvements with a gluten free diet. My mother had Celiac disease, so I'm very fortunate I didn't get the full-blown version of it. I went strictly gluten, casein and soy free for over 5 years. Now 2/3 of my diet is gluten free and I'm thinking about whether I want to go all-in again. Or not. Sometimes its a balance of quality-of-life issues versus an expected pay off in symptom reduction. Eliminating any food or food group can pose a challenge for the patient, add stress to caregivers (especially any that do shopping or cooking), and can also pose social issues with restaurants, ordering, etc.


    As you may know (but casual readers may not), being sensitive is not the same as being either allergic having Celiac (either of which means you must eliminate gluten entirely). And, being gluten sensitive does not necessarily mean that it is the be-all and end-all cure for whatever ails you now. Odds are, that ship has already sailed, quite awhile ago, and blaring the fog horn at this late date probably won't bring the ship all the way back to shore.


    Some of us may enjoy more impressive results than others. Some of us may choose to overlook the issue as being entirely too much work for possibly too little pay. And then there are fence sitters, like me at present, who still stand to be swayed once more into the straight and narrow, if strong enough research on the subject comes to our attention.



  3. Hi Kamlesh,


    In some people, there may be a connection between gluten and scleroderma or other autoimmune conditions.  We have a section of our main site on it. 


    It might reduce some inflammation to avoid all gluten (which is a mighty endeavor in itself) but only if you happen to be sensitive to it. 


    See Celiac Disease and Gluten Sensitivity at https://www.sclero.org/scleroderma/autoimmune/celiac-disease/a-to-z.html .



  4. Hi Kamlesh,


    I'm sorry you're having login issues. Usually that is caused by corrupted cookies. 


    Could you please try deleting your browser cookies, then re-enable cookies (which is necessary for the forum to work properly) and try again? 



  5. Hi Jean,


    Then call another disability attorney. If you quit your job, they are just going to complain that you should have called them first. So, keep calling until you find someone who actually cares and isn't just out to make a fast buck.


    You are right to wonder how much longer you can hold out, and you really need to know all of your rights and responsibilities before that day arrives.



  6. Hi Quiltfairy,


    I want to apologize for my very belated reply.  I'm sorry that you lost your dog, Tony. :crying:


    Is Mariaha feeling any better yet?


    I'm so happy for pets. I think of them as a secret weapon for chronic illness, just as good if not better than most medications!




  7. Hi Jean,


    Anyone who is thinking they may not be able to continue working full time should consult a disability lawyer immediately, before letting their employer know or making any other work arrangements (like working fewer hours, working

    from home, taking a less demanding job, etc.)


    Initial consultation with a social security disability lawyer is always free.  If they take your case on, they take a percentage of your first Social Security disability check (and none after that. The percentage is set by law.)


    Systemic scleroderma is a listed disabling condition, however, the applicant must prove that they meet the medical requirements (as well as having enough current credits in the Social Security system). See Scleroderma and Social Security for more info.


    Please make an appointment with a disability lawyer right away. Many people make the mistake of worrying that they might be jumping the gun, or just hope that things will somehow magically improve.  But people facing possible disability are at a tremendous disadvantage in every way, and it is impossible to plan too soon, or too well, for such an eventuality.  For example, it can take months -- and even years in some jurisdictions -- to receive claim approval (or denial).  And even after approval of disability, it is still nearly a two year wait (from time of initial disability, as established by Social Security) for Medicare benefits to kick in.


    Also, many people wish they had never let their employer get a whiff of their illness beforehand. Although there are some protections under the Americans with Disabilities Act, there are a great many exceptions which can work to the detriment of a sick employee.



  8. Hi Worried,


    Welcome to Sclero Forums.  Please keep in mind that I'm not a doctor, and have no medical training at all.


    Perhaps you could make some progress by asking your primary doctor for a referral to a rheumatologist. Then they could perhaps run some tests or monitor you to see if any other symptoms develop.  Then, if it looks like scleroderma, which it may, they could refer you to an expert center for further evaluation.  Bear in mind, like Jo mentioned, that a scleroderma diagnosis is very often a long and difficult process, often years, unfortunately.  There is an effort afoot to get it diagnosed in the earlier stages by scleroderma experts, however that has not yet seemed to have caught on very well among rheumatologists, in general.  So if you have tests done that seem to support the diagnosis, you may then need to push for the expert consult.



  9. Hi Firefly,


    Welcome to Sclero Forums. I'm sorry that you have worrisome symptoms and blood tests. Please keep in mind that I'm not a doctor, and have no medical training at all.


    As it happens, it will take an expert to sort your case out.  The first test you flunked, "dRVVT 47.4 HIGH" is what is known as the lupus anticoagulant.  And SCL-70 antibodies also occur in people who have lupus. Research shows that people who have lupus with the SCL-70 antibody are at greater risk for pulmonary hypertension and kidney involvement.  In a 2001 study, none of the lupus patients who had a positive SCL-70 also had scleroderma; I mention that because it is possible to have the two diseases in overlap, but it seems it is more likely that with these results, you would likely have either lupus or scleroderma (but it would seem that in this instance, the odds are, not both at once.)


    While the doctors sort things out, I'd suggest you seek support from both the lupus and scleroderma communities.  Since your inquiry just doesn't sound like the usual scleroderma onset story, which is quite varied in itself, you might want to read up more about both illnesses while you wait for your rheumatology appointment. This sort of thing requires many years of medical training and experience to properly sort out!




  10. Hi Eve,


    Welcome to Sclero Forums!  I'm sure you're curious as to which form you have.


    Please see your doctor regarding your face rash. It is unlikely to be related to scleroderma, and probably is something very treatable. 


    I've had lots of face rashes, but none of them due to scleroderma.  A good rule of thumb to follow is to *never* assume that any new symptom is due to scleroderma, but rather see your primary care doctor about it right away. Have them start from scratch to diagnose it, and you'll find many items are obvious, ordinary, and easy to treat -- because with any type of scleroderma, we can all get absolutely anything else on the medical menu. And, in fact, we're probably a bit more likely to acquire anything, than the average person.


    Let us know how it turns out, too, okay?



  11. Hi Dimarzio,


    That's a good question. We continually erase old items on our main site, trying to keep it current within 3 years. Occasionally this wipes out a topic, once research seems to have stalled on it. In the case of nicotine, a large study was completed in 2011, which apparently erased doubt as to whether or not nicotine was beneficial or harmful in systemic scleroderma.


    When there's smoke there's...scleroderma: evidence that patients with scleroderma should stop smoking. Overall, these data provide robust statistical support for the notion that smoking has a deleterious effect on SSc. These effects can be long-lasting, but stopping smoking cessation could be beneficial with respect to several other outcomes, notably Raynaud’s. The authors concluded that physicians caring for SSc patients should encourage patients to stop smoking as soon as possible. J Cell Commun Signal. 2011 Mar; 5(1): 67–68.


    The article noted increased severity of Raynaud's in current smokers, which disappears after quitting. Heartburn was also worse in smokers, however, it took about 11 years for that effect to wear off after quitting. It also explains that other studies were smaller or poorly categorized smokers, and thus led to the errant impression at times that smoking might be good for scleroderma.  But of course, such a happy thought was too good to be true, and alas, further research seems to have proven it wrong.



  12. Hi Lesley,


    Welcome to Sclero Forums. I'm sorry your friend has scleroderma and cancer, too.  Unfortunately, as Jo mentioned, there is an increased incidence of cancer with scleroderma, so it's not entirely unheard of. 


    As I understand it, the usual approach is to treat the cancer as it is usually treated. Generally, it poses a greater threat to longevity than scleroderma does. Cancer treatment would of course be coordinated with her scleroderma expert, too. 


    Stress is bad for scleroderma, and cancer can't help but be a stress, so it would be doubly important to do everything possible to alleviate as much stress as possible. It's extremely hard to focus on pleasant, happy things when life is so disrupted by illness. If you can, try to help your friend keep in touch with the lighter side of things; serious illness doesn't mean staying serious all the time, especially when we need laughter, more than ever before. Movies, books, hobbies, any distractions that you enjoyed together before -- try to remember to still enjoy them together now. 



  13. Hi Grandma Boo,


    Welcome to Sclero Forums!  I'm sorry it's taken so long for you to get a diagnosis. But I think now things will start falling into place for you. As you get the various symptoms treated, especially the hypothyroidism and the sleep disorder, it may very well ease the cognitive issues you are experiencing. 


    Give yourself some time to adjust, and to get your various symptoms treated properly. I've had varying amounts of cognitive issues and brain fog, which has mostly been laid up to concomitant fibromyalgia, which commonly overlaps with scleroderma and other autoimmune diseases.  My cognitive issues improved a lot with treatment for hypothyroidism and sleep disorders, plus reduction in stress and ample rest.  


    Still, when I'm tired, for whatever reason, real words simply escape me and I'm left with very lame descriptors, such as "that thing you turn pancakes over with".  At my sickest, "dishwasher" was my favorite substitute noun. As in, "Oh, no, I forgot the check writer in the dishwasher!" Which of course would mean that I forgot the checkbook in the desk.  The difference between this and Alzheimer's sorts of stuff is that we are painfully aware and bothered by the slips, and they magically clear up when we are well rested. 


    Happily, I've only gotten better over the years, instead of worse. However my loved ones are going to have a miserable time trying to figure out if I ever do develop Alzheimer's, since I have such a well established, ditzy track record. 


    Try to relax and have fun with it, because worrying about it only increases stress, which disrupts sleep, and here we go again. Perhaps use it as a sign that you should be resting a bit more, maybe adding some more naps or quiet time into your daily schedule. Alleviating stress is always good for all of us! 



  14. Hi KeroYosh,


    Welcome to Sclero Forums. Please keep in mind I'm not a doctor and verify everything with a reliable medical source.


    Jo very nicely explained the two main types of systemic scleroderma. There are also two main branches of scleroderma, localized and systemic.


    Systemic doesn't have any color change to skin involvement, but Morphea, a localized form of scleroderma, has a color change to affected skin.


    The part of the body Morphea affects has nothing to do with its severity. Also, Morphea is not fatal. It often clears up on its own in three to five years, without any treatment.


    It is also quite treatable. The first line of treatment is what is called UVA1 Phototherapy. It's a lot like a tanning lamp but with special wave lengths.


    A board certified dermatologist who specializes in skin diseases may be likely to sort this out for you. In the U.S., many scleroderma experts only see those who have the systemic variety, but a few clinics treat both.

  15. Hi Greg,


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


    As it happens, lung involvement occurs with systemic forms of scleroderma, so your breathing problems may be related to something other than morphea. I would recommend that you see your primary care doctor about referral to a pulmonologist.  Please see: Morphea Scleroderma.


    There are many treatments for lung conditions, depending on exactly what type of lung involvement you have.  But please do not just write this off to morphea, as that would be highly unlikely, and it may be either a lung, asthma, and/or heart problem, as many things can cause shortness of breath. 


    Also, you may really want to consult a scleroderma expert who also treats localized (most of them specialize in systemic so preview the link Jo gave you carefully), because you may want to have your treatment program evaluated. Generally speaking, UVA1 phototherapy is the first line treatment for morphea now.  Please see: Morphea Treatments.


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



  16. Hi Kamlesh,


    I used a TENS unit for neuropathy for a few years. It was very helpful, more helpful than the medications I tried. Luckily for me, that particular batch of pain went away when the area (my whole thigh) became completely numb. 


    So for some of us neuropathy sufferers, there is light at the end of the tunnel...the complete bliss of numbness!



  17. Hi Ashley,


    I should add that it would be a great idea to seek counseling for being "terrified" of getting your heart and lungs checked.  This entails entirely painless and harmless tests that are extremely common.  The fact that your doctor ordered them means next to nothing, as they typically order the tests to get a baseline, which is helpful, often many years later, to figure out if there has been any silent or significant disease progression.


    It's not the least bit normal to be terrified of regular, everyday medical tests, regardless of whether you are healthy or sick.  The odds are tremendous that your test results will be perfectly normal.  To have an exaggerated fear is called a "phobia".  Phobias can be very quickly and easily remedied through very simple counseling procedures.  Of course, maybe you were just being a bit emotional or dramatic at the moment and don't actually harbor a phobia over this.  If you do think you might be on the phobia end of things, it's a great idea to address it head on with your counselor.


    Sadly, some people let their fears rule the day. It causes them to skip recommended preventative medical or dental care, in which case the phobia turns out to be life-threatening.  It's entirely unnecessary to live with exaggerated fears, and there are very simple, easily taught and easily learned techniques for overcoming them.  It's not a long, involved, difficult, or even frightening process.


    Please let us know when you've succeeded in having your tests completed.  And perhaps you can also then help others here by letting them know how you managed to overcome frights and fears or phobias to deal realistically with health issues.



  18. Hi Erick,


    Welcome to Sclero Forums. 


    The rule of thumb we use is to give ourselves two weeks to adjust to the idea of possible scleroderma, and if we aren't on an entirely even keel at the end of that time (eating well, sleeping good, enjoying life again), then we strongly recommend medical consultation to see what can be done to bolster spirits.  It's very challenging to deal with any illness, and we need all our wits about us to manage it with aplomb.


    Please bear 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 I am far from perfect!  As I understand it, many of the symptoms you mention sound like they might correlate more with anxiety than scleroderma; certainly, to the best of my knowledge, visual snow and intrusions are not a scleroderma phenomenon.  Tinnitus and Raynaud's can also be triggered by anxiety.  Since your blood work is good, but you are fearful of cognitive decline, for some reason or another, perhaps you could get a neuro/psych eval to see what might be going on.


    In fact, at most of the major medical centers, if a patient shows up with a bunch of various symptoms at once (like I did), they often send them for a thorough neuro/psych eval straight away (like they did to me).  That's because its very common for symptoms of mental and physical illnesses to overlap, and for physical illnesses to have psychological components, etc.


    Many of us around here have lived for many years with various types and severity of scleroderma.  We are able to have pleasant, if often reduced or modified, social lives.  Many of us still work and have found ways to live with our symptoms, and to work around them. Many of us also have more illnesses than scleroderma to deal with, too, or have psychological complications of illness. I've survived not one, but two divorces, and also been widowed after 33 joyful years; so you are not alone around here with the "stuff happens" phenomenon. I've found that counseling can be enormously beneficial for developing the extra coping techniques necessary to make healthy adjustments to any illness or pitfalls of life.


    Once we get our feet on the ground, then things like our forum can help us stay afloat, and make friends throughout the world.  Please see what you can do to get more in-person help and support to get you over this hump. Think of this as a valley, and that you are going to start climbing uphill now to see the view from the top. Climbing takes extra effort and may even take the wind out of you from time to time, but keep on going.  The view is worth it!



  19. Hi Ashley,


    Well, it's possible that he might have a little bit more experience in diagnosing scleroderma, than either you or I.  It's totally fabulous that your nail beds are clear and that you don't have Raynaud's! 


    Get the heart and lung testing done, whenever they schedule it and wait for the rest of the blood test results, too.  If after all that is completed you still doubt your doctor's expertise or conclusions, you could always get a second opinion if there is a sound medical basis for it.


    It's quite possible to have telangiectasia without having scleroderma, in fact, nearly any symptom of scleroderma can be part of another illness or occur in otherwise perfectly healthy people.  That is why diagnosis requires a combination of various symptoms and test results, and why some symptoms, like skin tightness and pulmonary fibrosis, carry a lot more weight than others.


    While you're waiting, please rely on your counselor for help to see you through, as none of us are capable of virtual diagnosis, nor can we provide enough assurance to assuage health-related anxiety.  This is a great time to learn some new coping skills, while you wait on tests and more test results!  Building up your resilience surely will help you, whether you pass or flunk your next round of tests.



  20. Hi Chris,


    I did a little digging and discovered that you were right; as it happens, the page you were looking at on our main site does not include the Royal Free Hospital, as they haven't submitted their page listing yet.


    However, they are listed in the Eustar and SCTC lists, so I've added those resources to the web page. Bear in mind, those resources are generally not updated as regularly as our pages. Also to save you a bit of time going through the more cumbersome lists, here is the link to the Royal Free Hospital London contact page.


    You may also be interested in our Morphea Treatments resources. Perhaps you could ask your expert about the possibility of phototherapy.



  21. Hi Elzunia,


    Welcome to Sclero Forums.  I'm sorry you have concerns about possible scleroderma.


    I agree with Jo, I think you might benefit from consulting a scleroderma expert.  It's often difficult to arrange an appointment, as there are only a few dozen experts in the United States, but scleroderma is so rare that most rheumatologists may see only one or two cases in their entire career -- and they are very unlikely to recognize anything but the classic, advanced-disease textbook case.


    With Raynaud's and centromere antibodies, you still might have a "wait" for a diagnosis with a listed scleroderma expert.  It's possible they might think you're early stage and that it might sort out to be another autoimmune disease in the end.  So you may be left with not much info and regular follow-ups for awhile, until things are well established. But you have obviously figured out that you are going nowhere, fast, with your local doctors.



  22. Hi Ashley,


    Welcome to Sclero Forums.  I'm sorry you have worrisome blood test results and hope you have a good appointment with your next consultant.  In order to improve the odds of it being a useful meeting, I'd recommend that you seek out counseling ahead of time, and do everything you know to subdue the anxiety and panic attacks, such as taking your medication as prescribed, getting appropriate exercise, eating right, and challenging yourself to learn something new, that is not scleroderma-related.


    A comforting idea for you to keep in mind is that about 20% of blood tests are just plain wrong. Your result may have been a mistake and you might never get that result again. If you find that thought discouraging, then you might actually be experiencing over-the-top excitement with the idea that you'll have a diagnosis and none of this was in your head, etc. I mention this because there is such a very fine line between anxiety and excitement that sometimes when I'm feeling anxious, I can just force a smile and then call the apparently same emotion excitement!


    Of course, that's just a layman's stab at trying to quell the situation you're in. As you can tell, we certainly try to be helpful, but we are not mental health professionals. The guideline we all use is that if we are still upset, and not back to normal (with our attitude, diet, sleep, everything) within 2 weeks of learning of the prospect of a serious illness, then we really need to seek professional help. Support groups all naturally have severe limitations, and are only helpful once we are basically well-balanced.  And believe me, many of us have sought outside help to get on an even keel, even those of us who didn't suffer from anxiety or depression in the first place.


    Bear in mind that your doctor will want to focus on the facts of your situation, so to participate properly in your care, as an adult, the responsibility lies with you to come to grips with things emotionally and to be able to rightfully assure them that you can handle both good news and bad.  The harsh reality is that the doctors often withhold a serious diagnosis if they feel a person cannot deal with it emotionally, because that would often be doing more harm than good.


    I've talked to some people who thought that the doctor would diagnose them faster if they knew how upset they were about the prospect, and that crying or tantrums would help speed things up or encourage the doctor to take things more seriously, but exactly the opposite is true. The doctor is more likely to become focused on tamping down anxiety, which might lead to over-reassurance that they are physically fine and perhaps even over-attribution of symptoms as being only due to anxiety.  And really, if the anxiety isn't under the best possible control, you have to admit they might have a point, as anxiety can wreak all sorts of havoc with physical symptoms from head to toe.


    But, by focusing on doing everything in your power, putting into action all that you know will help you stabilize emotionally, then you put yourself in a position to get your physical concerns promptly addressed.  One thing that sometimes helps me, when I'm tempted to worry-wart something, is the thought, what if I'm wrong, how foolish will I feel for having wasted all this time and energy and sleeplessness over NOTHING?  I dislike feeling foolish, so that tends to help me put it aside and sleep better.


    Please pardon my frankness, but for fear of death, welcome to the human condition. Nobody gets out of this alive. It doesn't matter if it is scleroderma or cancer or heart disease or accident.  Therefore, I don't see that soothing your concerns about scleroderma will actually help in the least.  Should we manage to soothe those fears somehow, the same fear will just transfer to something else, like cancer or heart or whatever.  The bottom line is that most of us need to come to some sort of comforting idea about death, either through religious faith or logic; the logic being (if you are not religious) that then death is a nothingness. And if it's purely nothing, then what on earth do we have to be worried about?


    A good counselor helps us face our bottom-most fears, not just live with them or medicate them away. I'm sorry that we can't be more help on the matter, but as you've already discovered with Dr. Google, scleroderma is usually not a walk in the park, but with the right attitude and support, we can get through it anyway, sometimes by trodding slowly, sometimes on tiptoe, or, like Jo, sometimes even merrily skipping...anyway!