Guest guest Posted April 11, 2005 Report Share Posted April 11, 2005  www.sclero.org ISN Books are now available worldwide! Enable pop-ups for site menu.Refresh page if links don't work. About the ISN Donate Now ISN Bookstore Languages Medical Newsroom Message Board Support Stories Support Groups Bogotá, CO SWA Sites to Surf! Hope on Horizon ISN Gift Shop Email ISN ISN MedicalAdvisory Board Dr. SeiboldChair of ISN Medical Advisory Board Dr. CatoggioDr. Marco Mattucci CerinicDr. C. Dr. Hsiao-Yi LinDr. Tafazzul e-Haque MahmudDr. Janet PopeDr. Shinichi SatoDr. van den Hoogen ADVERTISEMENT WarmMeUps.com sells hand and foot warmers. Please select "ISN" during checkout to donate a portion of your purchase to the nonprofit ISN! Our site index and site menu arecompliments of Xtreeme SiteXpert. Our site search ispowered by FreeFind! We subscribe to the HONcode principles of the Health on the Net Foundation. Verify here. How can we help? We know firsthand how challenging it can be to cope with scleroderma and related illnesses. Over 70 worldwide volunteers operate the nonprofit International Scleroderma Network (ISN). We operate this website (with 1200+ pages in 20 languages!), book series, medical advisory, membership, research fund and support services. We are eternally grateful for your enthusiastic support of our worldwide Internet grassroot mission to conquer scleroderma and related illnesses. Warm Hugs, EnszISN President Contact ISN International Scleroderma Network7455 France Av S #266Edina, MN 55435 USA Toll Free1-800-564-7099Or Direct Diall-952-831-3091 Email: isn@...Inquiry Form in EnglishorEspañol (Spanish). REMEMBER THIS:The most important thingin the world to knowabout scleroderma iswww.sclero.org This site is updated daily. The International Scleroderma Network (ISN) Presents: Now available in 20 languages: Arabic | Bahasa Malaysia | Chinese | Deutsche (German) | English Español | Français (French) | Greek | Hebrew | Italiano | Japanese | Kannada | Korean Magyarul (Hungarian) | Nederlands | Polski | Português | Romana | Russian | Spanish | Turkish English Site Index: A B C D E F G H I J K L M N O P Q R S T U V W X Y-Z Patient & Caregiver Stories Main Menu Stories in: French | German | Greek | Italian | Polski (Polish) | Romanian | Russian | Spanish | Turkish Stories in English: A B C D E F G H I J K L M N O P Q R S T U V-Z Jewell: Diffuse Progressive Systemic Sclerosis My goodness, I wish I had known about this web site a long time ago! When I think back, I had been getting sick for a long time. I just did not know it. I put the fatigue, headaches, joint pain and body pain down to, "I am just working too much." For years I would be sick off and on but prided myself on not missing a day of work. However, I started doing a fair bit of contract work which meant I would be working for anywhere from a day to eleven or more months and increasingly, at the end of the contracts, I would just crash. Again, I put it down to working which I loved to do. Looking back, those were the, ?taps on the shoulder? I should have been paying attention to. Instead I just kept on going; sometimes work-sharing or working shorter contracts. The reality was, I loved my work and I think that helped me to stay in denial. I then took a position where I would no longer be doing ongoing contract work all the time although I still did some and was in the midst of forming a consulting company with some friends before I got sick. This would mean taking contracts while still working a full-time job. In fact we just got our first big contract when I got sick. I cannot tell you how disappointed I was over this. I knew I was getting older and it was time to stay in one place and settle down some, but I still wanted variety in what I did and that is what I hoped having a consulting company would serve. Yet I would still have a position with regular hours as well as holidays and benefits. Where I had prided myself on never missing a day of work from sickness, I now caught everything that was going around and for the first time ever I was not only missing days, I was missing many days, sometimes using up a lot of sick days. This was just not like me. I often felt awful but did not want to tell anyone as somehow I felt it made my life more vulnerable. I did not want someone telling me that it was time to find a new line of work. One day in April of 1996, I woke up and literally could not move. I phoned into the office and told them that and then said I would be there by the afternoon. I remember thinking about how much work I needed to get done. By the time the afternoon rolled around, I knew I would not be able to work and phoned into work again. To make a long story short, I did this for three days in a row before I knew I was not getting up at all for awhile. I saw two specialists, a dermatologist and a rheumatologist, in the beginning, one referring me again to the other. I was diagnosed with chronic fatigue syndrome (CFS), fibromyalgia and Raynaud's. At the time, I could not understand why I was not being diagnosed with lupus as my symptoms were so like those I had heard of with lupus sufferers and I had a positive ANA. (I still believe I have a lupus overlap but no one has agreed with that yet.) Both of my doctors were very good, but one retired after I had been seeing him for some time and the other became ill with cancer, so unfortunately, I found it was time to look for another specialist. In the meantime, I had been doing some research on the Internet and came across a page that spoke about silicone breast implants and the illness attached to them. I had mine put in shortly after nursing my last child (somewhere like twenty years prior) and had been told that they would last a lifetime. I became very interested in 1992 when the United States Food and Drug Administration banned breast implants. (They have never actually been approved. The plastic surgeon told me that they would last forever and that I could even nurse a baby if I chose to.) I was wondering then if I should get mine taken out, but when subsequent stories by the manufacturers came out denying the evidence, and women came out in groups using my buzz word, "choice," I thought that maybe I had been overreacting as well. I certainly did not want to lose my breasts so I comfortably drifted into what I now know was denial. Then I came across one web site that mentioned the symptoms most of the affected women were having. Seeing the symptoms all listed at one time like that and being only too acquainted with my own symptoms, my jaw dropped and I found myself sobbing for the first time since I had become ill. I had far more symptoms than what I saw on that page and had all but three of the symptoms on the page. I went to see another specialist that I had heard was experienced with breast implants. In addition to what I had already been diagnosed with, he diagnosed me with a particular kind of arthritis called arthropathy. I had it pretty much throughout my whole body, including my backbone and my breastbone. He also diagnosed me with Sjogren's Syndrome, irritable bowel syndrome (IBS) and gastro-esophageal reflux disease (GERD). I had a bone density exam that showed I also have osteoporosis which was a result of having had a complete hysterectomy in my early thirties. I had the hysterectomy to counteract symptoms I had been having back then. The symptoms never went away though, and now I see the hysterectomy as being totally unnecessary at the time. In fact, prior to getting sick at all, there was a doctor who I saw for a short time who diagnosed me with emphysema. I did not believe it. In fact, at the time, I thought he was just trying to get me to quit smoking. I was a fool. Since then I have been diagnosed with chronic obstructive pulmonary disorder (COPD). I have also quit smoking after thirty-six years. It has been about two and a half years now of not smoking. Around the time of having my breast implants taken out, the skin on my hands, arms, the front of my shoulders, chest, face, back, various parts of legs and hips, buttocks, sides, ribs and stomach became, itchy, inflamed, bloody in places from scratching, and hard. By that time, I had been so downtrodden by illness, questions and problems with an insurance company, and just everything, that I did not even want to get it checked out. It was my neighbor, who is an intensive care unit (ICU) nurse who said it was important and that I should get it checked out. I was sent to a dermatologist whom my primary doctor, who has been wonderful throughout this process and I cannot imagine going through all this without him, respects very much. He took a look at my laboratory tests and history and just kept on asking question after question, not allowing me to swerve off even a little bit. At the end of his examination he told me that I have progressive systemic sclerosis of the diffuse variety. He said it was very serious and that I should not take it lightly at all. He told me that if I developed any other symptoms, I should jump up and down and scream until I got attention if I was not being taken seriously. He also said he was going to phone my primary doctor right then (whom I was on my way to see) and tell him how important this was, and recommended that I be referred to a highly regarded rheumatologist/internist. I went to see him and he agreed with the diagnosis of the dermatologist, and also said the echocardiogram indicated that there is slight thickening on the pericardial sac of my heart and possible pericardial effusion. From there, he referred me back to the rheumatologist I had been seeing prior to him. I am still due for another echocardiogram and I have just finished getting a high-resolution cat scan of my lungs. When I had the breast implants "ex planted", sure enough, they were both ruptured and a calcinosis was found in the breast tissue, something that people with scleroderma know a lot about, I have had attacks that have landed me in the hospital at times that were both esophageal and angina. I am starting to get to know the difference between the two of them (I think). I get these attacks, though, at rest so MIBI scans will not show up what is happening as they rely on activity and stress on the heart. Both kinds respond to nitroglycerin. I have found that if I wear a nitroglycerin patch to bed at night, I get fewer attacks. This is the patch I am suppose to be wearing during the day, but the way I see it, I am more protected with Verapramil during the day. I also use nitroglycerin during the day if I feel something coming on. If I am woken up by one of them it is usually well along and much more painful as well as much more scary. What I am trying to say here is that I made up my own mind to put the nitroglycerin patch on at bedtime as opposed to during the day. I believe this choice of mine has significantly cut down the amount of attacks I have been getting. Not that long ago I was put on a course of Cyclophosphamide (Cytoxan). My blood was being closely monitored during this time and I got a call from my rheumatologist at one point saying that he was concerned about my white blood cell count and suggested that I get off the Cytoxan for three days completely, and then start again at another dosage. That went on until the next blood tests came back and my doctor phoned me again and wanted me to get in and see him as soon as possible. The problem was that I was too sick to go! In fact, I am often too sick to go to the doctor. That is why I build up my energy so that I can make my doctors appointments! During that time my doctor was scared that my kidneys were going to fail. It was ISN's Sherrill Knaggs who helped me throughout this period of time. I would have been so scared without her. We emailed each other back and forth as I went through my blood tests. Because Sherrill's kidneys had failed, she knew how to handle me. I say as often as I can, "Thank you, Sherrill." She held my hand throughout the whole, awful and scary ordeal. The ISN's Message Board has helped me immensely. People are kind and knowledgeable. I keep on learning and feel as though I am even more up to date on the latest research than most doctors. I find that the worst part about this disease is the unpredictability of the symptoms from day to day. Then the times in between when you are nearing a new diagnostic part of the disease and the uncertainty of tests or whether they will show up something specific to scleroderma. For example, sometimes things do not show up on tests, yet you know something is wrong. Many doctors know so little about the disease, so we, as patients, have to really keep on top of what is happening regarding this disease with the research and with other people. That is why this forum of scleroderma patients from all over the world is so important! We keep ourselves well informed and well supported to boot! There is no cure yet, but by working together we can make it happen, if not for ourselves, for the younger people. I think this forum is very important in advocating for and helping each other that we learn enough to advocate on behalf of ourselves during these very uncertain times although when and how to treat the disease is still somewhat of a mystery. My goodness, I wish I had known about this web site a long time ago because whether one is diagnosed with scleroderma or not as there is a lot of ambiguity in diagnostic efforts in autoimmune diseases and/or connective tissue diseases. It seems you know you are supposed to be here (the ISN web site) when what is happening to people here is also part of your own story. I am also grateful that technology is upon us. This is how technology should be working: People all over the world helping other people with the same challenges, again, all around the globe. For those who are too ill to even make it on a continual basis to support groups, which are rare for such a rare disease, this is a wonderful alternative. Thank you, sclero.org. Lastly, I would like to state very firmly that it is my belief after a good deal of research that the scleroderma I have has been caused by silicone implants. It is also my belief that in years to come, this will be as accepted as cigarettes causing cancer and asbestos causing asbestosis/cancer. The same public relations campaigns have been run with all of theses agents. There may be genetic predispositions. But how can we not have genetic dispositions? We have human bodies that are healthy and wonderful in their complexity, but many toxic agents can hurt that body only because it is human flesh; how can we possibly be immune to all that poison? I am glad to be part of a scleroderma community because it has helped me so much! I am just not glad about the way I got here. I pray these implants are not let back on the market. If they are, I pray for the lives of the women they will impact. To Contact the Author JewellEmail: jeweltara2000@...Story posted 10-9-03Story edited 10-31-03 SLEStory Artist: Ione BridgmanStory Editor: Judith LINKSautoimmune diseasescalcinosischronic fatigue syndrome (CFS) Diffuse SclerodermafibromyalgiaGERDIrritable Bowel SyndromeISN's Message BoardRaynaud'ssilicone breast implantsSjogren's ISN Artist: Ione Bridgman ISN Artist Ione Bridgman created original artwork to illustrate this page. She is in her eighties, and lives in New Zealand. Her lovely paintings illustrate many of our pages and book covers. ISN Story Editor: Judith Devlin Judith Devlin is the ISN Story Editor for this story. Would you like to help with this website? We have many openings for volunteers! Scleroderma Books by the International Scleroderma Network: On Amazon! Voices of Scleroderma Volume 3 Voices of Scleroderma Volume 3 is just beginning the editing process, with publication expected sometime in 2005. Share Your Story Submit your story in any language for posting on this website. Keep on Surfing! Go to Jill: CREST Scleroderma and Sjögren's We are a registered nonprofit 501©(3) patient organization.Members receive our ISN Insider Newsletter!International Scleroderma Network7455 France Ave So #266Edina, MN 55435 USAToll Free in U.S.: 1-800-564-7099Direct Phone: 1-952-831-3091 Email: site-inquiries@...© Copyright 1998-2005 International Scleroderma Network Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2005 Report Share Posted April 12, 2005 Thank you Lea, Isn't Jewel the woman who passed away recently in Hawaii? I remember being told early on when the MDL was being established, that so many women were developing scleroderma that they decided it was some kind of fluke, so scleroderma was eliminated as a complication caused by implants. I had an area of scleroderma on one leg . . . oval, about 2 " x 3 " . . . The doctors would not tell me what it was, even after a biopsy. I was told (by a doctor who saw a lot of implant patients) that this was something a lot of people had, and they just wore long pants to cover it?????? The area of scleroderma showed up shortly before I was implanted . . . thank goodness it didn't get worse. What gave me the idea, I'll never know, but I took a piece of Kombucha mushroom and wrapped it to my leg with Saran wrap. I wore it for hours at a time, 3-4 times. The scleroderma gradually completely disappeared (took years!) . . . Now the tissue is the same color and texture as the rest of my let. . . What was astounding is that the area of my leg covered by the mushroom developed thick, coarse dark hair. To this day, it still has more hair than the rest of my leg! Thanks again Lea . . . I'm sure Jewell would be happy that you are sharing her story. Love, Rogene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2005 Report Share Posted April 12, 2005 Honey, Jewell lives in Canada, and she is still hanging on to her life. She has severe scleroderma, and she is my friend. Jewell, and I had the same rotten plastic surgeon, because we were all implanted here in Edmonton. is taking time to be by Jewell's side, because they were so close, but this is so hard on . They both live in British Columbia, Canada. The rat who destroyed our lives now lives a life of luxury in Newport Beach, California. I'm sure that he is still implanting women. His name is Dr. P.J. (Jim) Voloshin. I will respond further tomorrow, because my chest wall is so painful...love you...Lea ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~``````````````````````````` Re: Jewell's story: > > Thank you Lea, > > Isn't Jewel the woman who passed away recently in > Hawaii? > > I remember being told early on when the MDL was being > established, that so many women were developing > scleroderma that they decided it was some kind of > fluke, so scleroderma was eliminated as a complication > caused by implants. > > I had an area of scleroderma on one leg . . . oval, > about 2 " x 3 " . . . The doctors would not tell me what > it was, even after a biopsy. I was told (by a doctor > who saw a lot of implant patients) that this was > something a lot of people had, and they just wore long > pants to cover it?????? > > The area of scleroderma showed up shortly before I was > implanted . . . thank goodness it didn't get worse. > What gave me the idea, I'll never know, but I took a > piece of Kombucha mushroom and wrapped it to my leg > with Saran wrap. I wore it for hours at a time, 3-4 > times. The scleroderma gradually completely > disappeared (took years!) . . . Now the tissue is the > same color and texture as the rest of my let. . . What > was astounding is that the area of my leg covered by > the mushroom developed thick, coarse dark hair. To > this day, it still has more hair than the rest of my > leg! > > Thanks again Lea . . . I'm sure Jewell would be happy > that you are sharing her story. > > Love, > > Rogene > > > > > > Opinions expressed are NOT meant to take the place of advice given by > licensed health care professionals. Consult your physician or licensed > health care professional before commencing any medical treatment. > > " Do not let either the medical authorities or the politicians mislead you. > Find out what the facts are, and make your own decisions about how to live > a happy life and how to work for a better world. " - Linus ing, > two-time Nobel Prize Winner (1954, Chemistry; 1963, Peace) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2005 Report Share Posted April 12, 2005 Lea, I just logged back on because I realized I had the wrong woman. . . Still, I'm very sorry to hear Jewell is so sick! I keep praying there will be an end to all this soon. Wouldn't it be the end of a nightmare if the medical profession would acknowledge our problems and do everything possible to help? Or am I dreaming? Praying for Jewell, and YOU! Love, Rogene Quote Link to comment Share on other sites More sharing options...
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