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Shelley Ensz

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Everything posted by Shelley Ensz

  1. Hi Meeta, Uh, make that hugs to Aadhaar, not Adahar. DUH. :blink: On behalf of our entire volunteer team, thanks for your kind words about our website, Meeta.
  2. Dear Meeta, I'm very glad you are finally beginning to get some answers for Adahar's illness. We have a page on our site about Scleromyxedema. I hope you find it helpful. And here is some treatment information from that page: IVIG and Thalidomide Combination is an Effective Novel Therapy for Scleromyxedema. In the majority (83.2%) of cases, an abnormal paraproteinemia is present. IVIG and thalidomide combination is an effective novel treatment of scleromyxedema with systemic involvement and associated light chain monoclonal gammopathy. Petros Efthimiou. ACR Conference Oct. 2003. Give some warm hugs to Adahar for us, of course!
  3. Shelley Ensz

    Radio Star

    Hi Barbs, Congrats! I am very glad that you helped raise awareness of Raynaud's with the radio interview in the U.K. I'm willing to bet you gave great information, and I'd be surprised if you were not an absolute stitch. I was finally able to meet Anne Mawdsley in San Diego in 1998. She was at our first Scleroderma Webmaster's Association Meeting, along with her friend Ann Phelps, who runs the Irish association. She's very special! Kudos on raising awareness of Raynaud's!
  4. Shelley Ensz

    Water Aerobics

    Hi Graywolf, Yes, just like Sweet said, water aerobics can be fantastic for scleroderma and other forms of arthritis. A few special considerations are to try to get into an arthritis warm pool class, as the pools are warmer and the instructors are well trained. Visit the center first, to see if the ambient room temperature is warm enough for you. I had problems with Raynaud's getting out of a warm pool into chilly room temps. Bring a very large towel plus a very warm robe and slippers into the pool area, if you can, so that if you do feel chilled you can warm up right away. Also check the locker rooms and inquire about the usual room temps. Don't hesitate to take it easy in the classes. Don't feel compelled to do all the exercises on your first visit. If you are out of shape, it may take awhile to catch up with the regulars. Also dress extra warm for the outdoors, and use a handicapped parking sticker so you don't have to walk too far in cold temps right afterwards. I find that warm pools provide a wonderful pain relief! And I enjoy just floating for 20 minutes, when nobody else is splashing around. The warmth and relaxation and lack of gravitational pull feels terrific, and seems to last for quite awhile. Also, use skin and hair moisturizers before and after, or your sclero skin will mightily object to the whole routine in a big hurry. I also use prescription goggles, since the chlorine worsens dry eyes terribly (and because its nice to be able to see). With a few sensible precautions, you should be able to thoroughly enjoy yourself, make new friends, get some healthy activity plus some pain relief, too. It's a win-win situation, all the way around!
  5. Shelley Ensz

    Is It Just In My Mind?

    Hi Louise, It is rather true, in some respects, that we can't feel pain until we think about it. That's because the brain can only process one thing at a time. So I am a wholehearted believer in distraction as part of a pain management program. However, for me it takes complete, involved distraction -- not idle distraction like watching TV, which for some reason seems to exacerbate pain for me. But engrossing hobbies and work (even volunteer work) that require a lot of concentration are a pure pain relief for me. The only real problem is when I come up for air -- breaks, mealtimes, pure relaxing times, when it can seem like a sudden onslaught of pain. My guess is its the same pain that's been there all along, but I was just too absorbed to notice it. Another issue is that at certain times in illness, we can be way too wiped out to do anything that is absorbing; even reading a book can be too hard. Those times, I just aim for the most absorbing thing that I am capable of doing -- especially listening to soft music which has its own restorative properties -- or I sometimes resort to medications to get things under control enough to be able to tackle more demanding tasks. In my book, hobbies are the very best thing for pain relief, especially hobbies that involve creativity of any sort, since creative projects tax every part of the brain. I'm sure many others will chime in with proactive approaches they've developed to deal with various types of pain. But of course, we also need to explain our pain to our doctors since sometimes treating the underlying condition can make it go away completely...or a least, for a little bit. So no, I don't think the pain is in your mind, it is definitely in your body...but our minds can only pay attention to one thought at a time, so sometimes we are successful in defeating or overcoming the pain signals. And sometimes, no matter how good our intentions and our effort, there is just no getting around a good ol' fashioned "interesting bodily sensation" (aka pain).
  6. Shelley Ensz

    Dr Visit

    Hi Whirlway, Thank you for bringing up the topic of Vitamin D. As you can see, it plays a big role in autoimmunity. In some parts of the world, even daily sunlight exposure without sunscreen doesn't help since the sun's rays are too dim for part of the year. I do full-spectrum light therapy to treat psoriasis. It helps a lot in reducing my psoriasis outbreaks and their severity. A handy side effect is that it also helps with vitamin D levels, and with normalizing sleep patterns. They are also used to treat seasonal affective disorder. Full spectrum therapy lamps are different (stronger) than the regular full spectrum lamps, which are often sold in craft stores. It's something you may want to ask your doctor about. My therapy lamp is just like a usual desk lamp, and I use it at full strength at my desk for one to two hours every morning (and dim it after that). By the way, it's not like those awful light panels that you see people staring into in ads. I could never stare at a bright light and have my eyes live to tell about it. Anyway, its another option, on top of sun exposure, fortified foods, and pills...and especially when all of those combined just aren't enough.
  7. Hi JG07, Wow, you have an awful lot to deal with at once! Were you undiagnosed, or misdiagnosed, for a long time? How are you dealing with all this?
  8. Shelley Ensz

    Please Help!

    Hi CED, Good luck at your rheumatologist appointment. Let us know how it goes!
  9. Shelley Ensz

    Can I Refuse Steriods?

    Hi Patty, As a stopgap measure, I can offer one tip regarding the weight gain with prednisone. My husband had to be on it, unavoidably, and his doctor 'promised' him he would gain weight on the high doses -- that he would have the munchies all day long. So we took aggressive action by planning for the all-day munchie attacks, by preparing tons of fresh vegetables each week. We put them in little baggies and containers, and packed his lunch with dozens of healthy yet very low-calorie snacks each day (cucumbers, radishes, celery, peppers, lettuce, carrots, zucchini, flavored with herbal seasonings, not salt). We also packed extra waters, since that helps curb hunger, too. He was unbearably and unusually hungry -- and he nibbled on vegies from morning til night, and then had all his usual meals on top of that. Everyone was pleasantly surprised to find that he actually lost a few pounds while on high dose prednisone -- but certainly not from a lack of eating! So it may not be the munchies that are the culprit, but rather what is being used for munchies. P.S. That's not to say that this approach would work for you, even as a short-term measure while you are trying to go off of it, nor does it mean that you are overeating, either! As I understand it, weight gain may simply be unavoidable with prednisone, and some of it may be due to fluid retention, too.
  10. Shelley Ensz

    Mind Games

    Hi Giorgigirl, I'm sorry you are having difficulties with concentration and such. We have a page on Brain Involvement, which may answer many of your questions, or even inspire new ones.
  11. Shelley Ensz

    Diffuse Systemic

    And for those who would like to see the nitty gritty of the research studies in regard to prognosis and mortality, our link is Systemic Sclerosis: Prognosis and Mortality. It is, obviously, an upsetting subject to read about for many of us. As with everything on this forum and in our website, please just avoid anything you don't feel ready for yet, particularly if you are in the throws of depression or anxiety. Sooner or later, curiousity gets the best of most of us, and I can't say I felt any worse knowing the facts than simply guessing at them. Especially since years ago, doctors painted such a grim picture of survival, I found the actual facts to be a tiny bit less daunting, in some respects.
  12. Shelley Ensz

    Diffuse Systemic

    Dear Oddone, I understand what you mean, but as it happens, we are not set up to do medical surveys on this site. There are hundreds factors that go into valid survey design, as well as laws regarding medical privacy...and we are not doctors nor researchers. It really is true that every case of scleroderma is different. Some people will survive longterm, and some will not, but there is no reliable way to predict exactly who will develop complications early on, and who will not. Besides, even if 99% of the men with diffuse scleroderma who were surveyed lived to the ripe old age of 100 with nary a complication, that would mean nothing at all for your husband's particular case, as he might be the 1 in 100 who develops problems (or vice versa). Each research study on survival needs to be read very carefully before even trying to generalize the results. Basically, diffuse scleroderma is considered to be the worst and most fatal form of systemic scleroderma. Extent of skin involvement tends to be related to the amount of internal damage that eventually occurs -- but not always. Conversely, people can have a lot of internal organ involvement without any skin involvement, too. Its usually quite a good sign to make it to the 5 year mark without extensive internal involvement. But stuff can happen, and it doesn't necessarily mean that a person is "home free" at any stage with any type of systemic scleroderma (limited or CREST, or diffuse). Your husband has a very serious disease. But with both good care and good luck, he may beat the odds. The thing is, there are no guarantees -- for anybody, even people who are perfectly healthy have no idea how long they have left on this earth. That's why it behooves all of us to make the most of every day. Which is getting me entirely off topic of the fact that you can read all you want about prognosis and mortality for systemic scleroderma, and the most you can conclude is that you will need to be extremely flexible -- plan for the worst and expect the best sounds contradictory, and perhaps someone else can explain it better. My husband has a disease that is usually fatal, but he is beyond the bell curve yet still quite happy and very alive. With great doctors, superb self-care, and an abundance of happiness and delight, your husband might also outlive all the statistics. And even if he doesn't, if you have filled every moment with love and joy, he will still be one of the luckiest men in the world...and you will be his lucky lady!
  13. Shelley Ensz

    Medications

    Hi Sadie, One thing to note is that there is a natural relapsing and remitting course of scleroderma, and we all tend to credit whatever treatment we are on, or lifestyle changes we have made, for any improvements in our condition. Whereas, it often is just the natural course of the illness. So always take individual reports of improvement (due to whatever) with a grain of salt, and rely on the large clinical trials for treatment guidance. Here is the entire section from our main site about Penicillamine -- Until very recently, Penicillamine (aka Cuprimine, Depen, or d-penicillamine was commonly used for this purpose in Systemic Scleroderma, but in 1997, a large multi-center clinical trial in the U.S. proved that there was no difference between high-dose and low-dose Penicillamine in the treatment of Scleroderma. This study only tested the difference between high-dose and low-dose. It was not designed to determine if penicillamine is effective in the treatment of Scleroderma, so further studies need to be conducted. Rapid Progression of Scleroderma Possibly Associated with Penicillamine Therapy "...This case raises the possibility that penicillamine may even be harmful in certain patients, and may perhaps be associated with acceleration of the decline in the course of the disease. The mechanism may involve either immune dysregulation or the generation of free radicals, directly toxic to the endothelium and leading to fibrotic tissue repair and intimal thickening." Article was on Medscape.com 1/1/98. High-dose versus low-dose D-penicillamine in early diffuse systemic sclerosis trial: lessons learned. After analysis, we were not able to tell whether either dose was effective or ineffective. Even in studies that are therapeutically "negative," careful evaluation of the data can examine other hypotheses and thereby provide important insights into other aspects of trial design, outcome measures, patient function, and trial conduct. PubMed. Semin Arthritis rheumatologist. 2004. Feb;33(4):249-63. Pulmonary involvement in systemic sclerosis due to therapy and as a complication. We report a case of a patient affected by SS, with isolated pulmonary hypertension, who developed bronchiolitis secondary to penicillamine. PubMed. Monaldi Arch Chest Dis. 2005 Jun;63(2):111-3. Minimal changes nephrotic syndrome associated to penicillamine treatment. We describe three patients with minimal change nephrotic syndrome associated with penicillamine treatment. The drug was stopped and nephrotic syndrome disappeared in 2-4 months, suggesting a possible causal relationship between penicillamine and minimal change disease. PubMed. Nefrologia. 2004;24(2):183-7. Goodpasture-like Syndrome Induced by D-Penicillamine in a Patient with Systemic Sclerosis. This unusual pulmonary-renal syndrome has been described on rare occasions in patients receiving D-penicillamine. This complication appeared to be uniformly fatal unless treated with aggressive immunotherapy. J Rheumatol NO. 7 JULY 2003;30:1616-20.
  14. Shelley Ensz

    Jennifer's Getting Married Tomorrow!

    Hi Jennifer, Congratulations on your wedding tomorrow! That is wonderful news, and I'm thrilled for you.
  15. Shelley Ensz

    Traveling With Emotional Stress And Pain

    Hi Ann, If you are going to manage the trip at all, I'd recommend doing absolutely everything in your power to promote relaxation, every moment. Pack some nourishing foods in your carry-on (fresh vegetables, grapes, nuts, dried fruits, nutritional food bars, whatever) so you aren't stressed from hunger or junk food during flights or layovers. Drink lots of water to stay well-hydrated. Dress in layers for the Raynaud's, with one more layer than usual since it is usually colder in airports and airplanes. I use one carry-on for a foot rest (since I'm short, and it alleviates back aches). Do not have drinks with ice or cold pop cans (again, Raynaud's). Do try to get hot tea, it is relaxing. And warm! Take extra meds along. You'll probably need them. I'm also a big fan of the worst-possible scenario. Once you figure out how you'll deal with the absolute worst outcome, it is amazing how you can face other disasters with aplomb. After all, what is an extended layover or rough weather, next to an obliterating plane crash? Granted, that idea gets some people in an even worse tizzy, but for me it really quells any nervousness and helps me take things in stride. Try to picture yourself as being in the eye of the storm, where it is nice and peaceful, rather than on the erratic fringes. Let the storm go on around you but not in you. Tell yourself you will sleep like a baby. Have an absorbing book with you, even some puzzles. Do deep breathing and relaxation exercises at every opportunity. There is no such thing as a "terrible wait" if you have absorbing things to do in the meantime. Imagine that you are flying to Tahiti (or wherever) rather than into cold territory. I live in Minnesota. The secret to handling cold weather is to not handle it. Keep the thermostats cranked, wear warm clothes all the time, seek warm food and drink. In other words, plan like all get out for making it as easy on yourself as possible. Also plan for the fact that you will probably be "boots up" for at least awhile either during or after the trip...and make that time as pleasant for yourself as possible too. Such as, good movie, good book, even hobby or craft to work on. Ah, and mercilessly pace yourself even when you are there. Establish your boundaries! Tell your brothers you can handle, for example, 2 hours of in-person activity a day, that you will need to rest until noon and have the evenings free. Ask them what would be the very best use of your time. Save yourself for the most important things. Bypass all the unimportant things, or things that other people can handle. Whatever you do, don't march in there trying to pretend you are your old, healthy self. Nobody can take care of you, except you. And if I were you, if it was in the least bit possible, I think I'd postpone the trip altogether until dad was out of rehab (when I could see him more, and when he'd appreciate the extra help around the house) than right now, when your brothers are there to help, as well as the hospital staff. The weather would be nicer in a few months, and you could be there when everyone else seems to be evaporating, to help make that transition time easier. It's a thought, but if you are already set on going, GO -- and make the very best of it you possibly can! I nearly forgot -- earplugs and eyepads to keep out the extra noise and lights encountered during trips.
  16. Shelley Ensz

    Concern For Others

    Hi Margaret, That's a good question, and thank you for bringing it up. We already have our ISN toll free telephone number for people to call. So, for example, Janey's husband called me when she was admitted to ICU, and Janey called me when she felt a little better. However, we do not post information like that on the website or make it widely available to members because it jeopardizes their personal safety. For example, when people are in the hospital, their family is often there by their side -- leaving their home wide open to burglary. Unfortunately, many burglars take to the internet to find easy targets nowadays, and victims of illness are the easiest target of all -- especially because they might also have some good drugs (i.e. painkillers) around the house. Plus a working computer, too! We also do not publicize vacations, for the same reason. If people want to share that information with their friends or elsewhere on the Internet, that's fine. But we try to bypass revealing information like that on our board (as much as we can catch it.) Not that this is happening in any of our current situations at all, but sometimes people will "play" the message boards and create dire or urgent situations to have everyone sitting on the edge of their seats....and then disappear for awhile to have their (fake surgery, fake disaster) event, with even more harrowing tales upon their return. We've seen that happen many times in our scleroderma online community, mostly perpetrated by one very well-known faker, who uses many different screen names. So when people call our nonprofit hotline with news or updates on their health or that of family members, we specifically ask them who they want us to *privately* share the information with. Even if they ask, we will not post it on the message board if the person is in the hospital. People will say, yes, but, they announce the names of all the people in the hospital at our religious services each week. And we say yes, but those are people you know and perhaps people you have reason to trust. That is entirely different than the Internet, where mostly nobody really "knows" anybody, and where untrustworthy people can be present at all times -- sadly enough! So it is a very real issue, and we do care, and we really do want to know what happens to everyone. But we do not want any members exchanging phone numbers or addresses unless they are absolutely certain of who they are revealing it to. That is just a basic rule of internet safety...for adults and children, alike. Our toll-free number is 1-800-564-7099. For those outside of the U.S., it is a direct dial (at your expense) phone call to 1-952-831-6091. Or an email to [email protected] with instructions on what people you would like me to notify. It is fine to give our number to your friends and family to notify in case of emergency. (Many people do that, and we do appreciate it!)
  17. Shelley Ensz

    Esophageal Spasms Or Heart Palpitations?

    Hi Barefut, It's my understanding (and please correct me if I'm wrong!) that if it is a mild and fleeting thing, it may be nothing to worry about. If it is stronger or recurring, you will need to check with your doctor on it. Many people have palpitations without any underlying heart disease. Major culprits for that are coffee and stress. See our section: Arrhythmias, Palpitations, and Conduction Disturbances. Spasms in the esophagus (throat) can also give some interesting feelings, as can any fasciculations (tiny muscle spasms or tics or twitches). Fasciculations are usually harmless and often caused by things such as caffeine, stress, magnesium deficiency or even withdrawal from some medications. You may want to read up on palpitations and such, and of course, consult your doctor over any new or worsening symptoms (because I'm not a doctor, I have no medical training at all, and I could be wrong, I often am!).
  18. Shelley Ensz

    Scleroderma Lips

    Hi Jennifer, There might not be much that can be done, if it is part of the disease process (which it very likely is.) See: Scleroderma Skin Involvement. And particularly this section: Scleroderma Lips Deep lines around the lips worry many scleroderma sufferers but unfortunately collagen injections and laser treatment are not advisable as they may cause scarring. Tightening of the skin of the face may lead to microstomia - a small mouth. Facial and mouth exercises may help. "Disappearing lips" can be a very upsetting cosmetic problem and a reputable plastic surgeon may be able to perform an operation called a mucosal advancement. Royal Free Hospital (Also see: Dental Involvement) I'm sorry that's not very good news. On the positive side, it really is true people notice facial expression far more than they notice facial features. You may notice that smiling makes the grooves disappear or at least be less noticeable. Frowning, or lack of expression, makes them more prominent. So although it seems very trite, the best treatment for scleroderma lips is to smile! It is a good stretch for the tight skin, and it distracts people plus brightens up their day at the same time. Lip thinning can be covered up (a little) by using a lip liner the exact same shade as lip color to extend the lip area -- and the closer both of these are to your natural lip color, the better -- then if/when the lipstick wears off the lips, the liner will not be noticeable, and it looks as though the lips are larger and fuller. Telangiectasia can be covered up well with DermaBlend cosmetics, or with my personal favorite, which is a mineral (brush on) foundation. A properly matched mineral makeup looks virtually invisible and is extremely easy to brush on. Some brands are anti-inflammatory. Mine covers all sorts of my imperfections, including telangiectasias, rashes, freckles, moles, and even facial (and eye) psoriasis. Distraction is also one of the major ways to improve looks. If you don't want people looking at the cannula, wear a lively hat, or a bright scarf. My husband, Gene, wears the OxyView glasses, which deliver oxygen through tubing in the glasses, so he doesn't have a visible cannula. Also, wearing stronger eye makeup can draw the attention to the eyes. Lucky for nearly all of us, the eyes are the #1 feature for sexual attractiveness...and eyes brightened up by a glowing smile simply can't be beat!
  19. Shelley Ensz

    Sue Ann: Mother Of A Son With Scleredema

    I just wanted to point out that Judith did not make a typo with "Scleredema" -- Scleredema is an illness similar to scleroderma. It is also known as Scleredema Adultorum, Scleredema Adultorum of Buschke, Scleredema Diabeticorum, and Scleredema Diabeticorum of Buschke. This is a very rare disease. Up to 1965, only two hundred twenty-three cases of scleredema had been reported worldwide. Read Sue Ann's story for more information and an update on her son's progress.
  20. Shelley Ensz

    New Member, I Have Crest

    Hi HDHBCH, Welcome to Sclero Forums, I am glad you found us! Gidget makes an important point. Scleroderma is a very unusual and difficult illness to treat. Most doctors may see only one or two cases of it in their entire career (if that). Thus, odds are very good that they don't know how to manage and treat scleroderma. Some medications that are perfectly okay for other (or even similar) illnesses can backfire with scleroderma patients. (See our recent discussions about prednisone for an example.) There are a few dozen centers in the U.S. that specialize in scleroderma. The best thing you could do would be to consult a scleroderma expert. They can review your treatment plan and make sure you are on the very best medication(s) for your condition. See Scleroderma Experts.
  21. Shelley Ensz

    My Three Week Nightmare

    Janey, as you know, I am thrilled to pieces that you are back home and starting on the road to recovery. I really can't imagine all you've been through. I must say, you were adamantly optimistic through the whole ordeal, and I think your attitude had a lot to do with the fact that you pulled through, despite everything. It's great to have you back...even with very wobbly legs and in-home rehab!
  22. Shelley Ensz

    Wonder Drug

    Hi Peanut, Sometimes prednisone might be unavoidable, but many doctors prescribe it readily, and they may not be aware of the especially adverse impact it can have on scleroderma patients. At the very least, I'd make sure the matter was thoroughly discussed and that your doctor is aware of the risks involved. Usually there are alternatives to steroids. (But of course, I'm not a doctor, I have no medical training at all.) See our Scleroderma Lung Treatments page for some ideas. And do the best you can, under trying circumstances.
  23. Shelley Ensz

    Good Days

    Jackie, I just couldn't resist....I gave you an "avatar gift" of shoes so we all have something to remember your good day with. For those who don't know about avatars yet -- they are the little picture underneath each member's name, next to their post. You can select an avatar from our large selection that has been custom designed by our ISN artists. There are hundreds to choose from, in many different categories. To set yours up, or to change it, click on the link for "My Controls" which is near the upper right hand corner of the page. Select the link for Avatar settings that you will see in the left column, down a ways. And follow the simple directions to pick (or change) your avatar.
  24. Shelley Ensz

    Wonder Drug

    Hi MaryFanPhilly, Thank you for pointing out the issues that you are encountering with prednisone. I'm very glad for everyone who has found relief with prednisone, and I really don't want to rain on anyone's parade, as I know how precious even a few moments of relief can be! Unfortunately, prednisone is strongly associated with kidney failure in people with scleroderma, and with pneumonia (increasing the risk by 70%). Even low-dose steroids can cause irreversible loss of brain tissue in people with autoimmune disease. Thus it is strongly recommended to try to avoid corticosteroids (such as prednisone) in people with systemic scleroderma. See Medications: Steroids. When avoiding it simply can't be done, work with your medical providers to try everything possible to keep it to the lowest dose. As Mary so aptly points out, you don't need to be on it very long for severe and irreversible problems to begin -- and scleroderma puts us at greatly increased risk of severe (and even deadly) side effects from prednisone and other corticosteroids.
  25. Shelley Ensz

    Pre Pregnancy- Would Love Some Answers

    Hi Stefanie, Oh duh, I just read your message title which is "Pre-pregnancy". I guess my congratulations were a bit too soon! Sorry....
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