Shelley Ensz

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Everything posted by Shelley Ensz

  1. Hi Dave, Yes, I find the same thing whenever the water temperature is too hot. Raynaud's can happen with too hot or too cold, but most people seem to be okay with the "too hot" part. I even have to be careful using rewarming devices, since sometimes they are so hot that they prolong the episode for me. To resolve the situation, take only moderately warm showers. Start the water running a few minutes before you get in; memorize where the dials are so that you can get the same temp every time, and be sure to stay in the warm zone, never too warm nor too cool. The room temperature also needs to be warm for me...if it is too cold, yikes, I can nearly turn blue from head to toe. Even use a space heater if you need to, and make sure the room is toasty before showering, then dress (warmly) immediately after.
  2. Hi Barbs, Why am I not surprised? Well, I am, actually. Since you are on a feeding tube, I wouldn't have ever thought in a million years that you'd be hosting a radio cooking show. But its a tremendous idea, I'm sure you'll be terrific at it, and I am thrilled for you! I suppose sometime or other, you might let it drop that you are our blogger...and that you were famous long before they came along, with your story in the Voices of Scleroderma book series. You know, I just realized -- what's really cool about a radio cooking show, is that you don't actually have to cook anything! Now, that's my idea of the best job of all. :P
  3. Hello Diana, Welcome to Sclero Forums! We're delighted to have you join us, although sorry that it's because of scleroderma. We'd love to hear more about you, too. Speaking of which, a terrific thread for old or new members to post an introductory message in is at: Getting to Know You and it is also a good place to read about other forum members, to help find those that you may especially relate to.
  4. Do you admire the photos next to people's messages in the forum, and wish you could have one of your own? The photos by messages are called "Avatars", as opposed to "Profile Photos" that only appear on your forum profile page. You may upload a photo of yourself, or use one of our lovely avatar photos or drawings. Before using an identifiable photo of yourself, please read our Forum Guidelines, particularly: Safety and Privacy Our forum messages can be read by everyone, including our spouses, children, doctors, employers, disability examiners, friends, neighbors, credit agencies, landlords, schools, insurance examiners, lawyers, thieves, cyber-criminals, police, courts, stalkers, pedophiles, ex-mates, and potential employers...even many years later. Always guard your privacy, safety and decorum on the internet. Select a unique, unrevealing nickname and username, in keeping with our neutral zone policy. If you would like, our ISN artists can retouch your photo to make it personal but still unidentifiable, such as by adding an eye mask or humorous element. Simply email your photo to [email protected] with your request or any special instructions and we will create your avatar and upload it for you. We will also gladly do this upon request for anyone who already has an identifiable avatar posted. We also have a lovely collection of avatars that were designed by ISN Artists. There are hundreds to choose from in many categories, including Animals, Birds, Butterflies, Flowers, People, etc. To pick out your avatar: 1. Go to My Controls, which is linked near the upper right hand corner of each page. 2. Down in the left-hand column you will see Personal Profile. Click on Avatar Settings. 3. On the avatar page, you will see a dropdown list of categories, starting with Animals. Select a category from the list and click the GO button. 4. Click the radio button by the photo (avatar) of your choice and then click the Use Selected Avatar button. That's it! All your forum messages will now display with your lovely new avatar. 5. You may need to hit REFRESH in your browser to see the changes on the forum pages. You may also upload an image from your computer for use as an avatar. They must be under 50KB in formats of GIF, JPG, JPEG, or PNG. The final size we actually use is 90 pixels wide, and usually about 4KB in size. You will get best results if you shrink your photo down to that size before uploading. A good free online graphics shrinking program is: . If you don't know what that stuff means, just pick one of ours. You may change your avatar at any time. What are you waiting for? Today is a great day to play with avatars and to add some color and interest to your Sclero Forum posts. We dare dare double-dare you to get a new or revised avatar right now. ;)
  5. Thank you, Jude! I'm hoping more members will go to "My Controls", find their Avatar Settings and select one of our delightful FREE avatars to liven up their Sclero Forums messages with lovely photos or artwork from our fabulous ISN artists!
  6. Hi Ani, I may be wrong (I often am!) and I don't have any medical training. But I'm not aware of any particular association between scleroderma and Basal Cell Carcinoma, other than the fact that its the most common form of skin cancer, so inevitably some people with scleroderma would also have it. See Nonmelanoma Skin Cancer by the Mayo Clinic. "A physician should be consulted if a person experiences skin changes, such as a new lump or an abnormally shaped mole. In general, skin lesions that remain more than two months are more likely to be skin cancer than those that go away in that time." If you have any suspicious skin changes, please see a doctor soon. They can biopsy the skin and diagnose it fairly easily.
  7. Hi Irene, We also have another thread on prednisone, entitled Wonder Drug. But please don't be deceived by the title. Here is an excerpt from my message in the thread: "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 a Glucocorticoids, Steroids (Prednisone) Warnings for Scleroderma . 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." Also, this is absolutely not the drug to take in order to lose weight! It is strongly associated with weight gain...almost inevitably so, since it dramatically increases the appetite and can also cause fluid retention.
  8. Hi KellyAnn, I also have tympanosclerosis in both ears, which has caused slight hearing loss in one ear and intermittent tinnitus (ringing in the ears). My eardrums are also scarred, and create the optical illusion that I always have water on my ears. It was only caught after all the damage was done, so I didn't need to have any treatment for it. You'd definitely want to consult an ENT (ears-nose-throat) doctor for evaluation and diagnosis. There are many possible causes for tinnitus -- including medication side effects, such as from aspirin and some antibiotics. It can even be caused by a haircut, if some hairs get wedged into the ear. Thus, like many symptoms, the cause could range anywhere from silly to serious. Don't just assume it is from a haircut, or from scleroderma either. It might be an infection, which could be treated right away and put you out of your ear-ringing misery for good. My (old) internist just kept telling me I had water on my ears when I complained of the tinnitus so it was months before I saw an ENT. That's why a medical evaluation from an ENT is probably paramount, unless your internist is really great with ear problems. Let us know how it turns out.
  9. Hi Jennifer, Good question. I think the answer is No. It's my understanding that only a small percentage of people with pulmonary fibrosis go on to develop pulmonary hypertension. If I remember correctly, a majority of people with systemic scleroderma eventually develop pulmonary fibrosis (to a greater or lesser degree), but only a small percentage develop pulmonary hypertension. For the actual facts of the matter, visit: Pulmonary Fibrosis and Pulmonary Hypertension. And, of course, please correct me if I'm wrong, as I often am! I have no medical training at all, bladda bladda bladda....
  10. Yes, it is safe for people with autoimmune diseases to swim...provided we know how. :blink: And we won't contaminate the pool by swimming in it (since autoimmune diseases are not contagious, of course). I'm always surprised by how often people assume (or fear) that scleroderma or similar diseases are contagious. So it never hurts to reassure them, particularly when we are sporting interesting skin features, like rashes or skin tightening. An exception is if you have any open sores, unless you can figure out a way to protect them. I am able to swim with head sores by using a snug swimming cap (that doesn't leak). But I've been sidelined for several months now with an infected toe. So if you tend to get a lot of open sores rather often, you might need to miss some classes. Inquire about their refund policy before registering, if missing classes might be a significant issue for you.
  11. Hi Lisa, I'm completely thrilled that Grace has had her surgery and come through with flying colors. It must be a tremendous relief for all of you!
  12. 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.
  13. 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!
  14. 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!
  15. 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!
  16. 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).
  17. 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.
  18. 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?
  19. Hi CED, Good luck at your rheumatologist appointment. Let us know how it goes!
  20. 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.
  21. 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.
  22. 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.
  23. 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!
  24. 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 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.
  25. Hi Jennifer, Congratulations on your wedding tomorrow! That is wonderful news, and I'm thrilled for you.