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About Dee

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  1. Four years ago I was diagnosed with Scleroderma/CREST. I had never heard of the disease. The first 2-3 years I was very sick. Thankfully, I'm better. Recently my mother was diagnosed with Scleroderma. I thought she might have fibromyalgia due to her pain and fatigue, but we never expected this. She has been hospitalized for heart and lung problems several times the last few years. This time a rheumatologist was also consulted. He sent extensive tests and records to Mayo Clinic. Scleroderma was their diagnosis. She has been on oxygen 24/7 for over a year, but we had no idea the problem was Scleroderma. Now many of her symptoms make sense. She has skin involvement, but not like mine. She also has esophageal problems. I believe she has Limited Scleroderma. I don't think the rheumatologist wants to give her serious treatment, probably due to her advanced age. She is seeing a lung specialist. My sister has Lupus. It sure makes me aware of the possible genetic predisposition for autoimmune diseases, in addition to environmental and stress factors . . . . Dee
  2. Hi Heidi, I have been off the board for a time and just now read your note. I'm so sad that you will be leaving us as manager. In the 3 years I've been a member, I have always admired your talent, wisdom, genuine concern, encouragement, professionalism and most of all, your spirit. It always shines through! Many times I've thought how very lucky we were to have you around. May you have many sun-shiney days ahead! You're fabulous! You're the best! Your friend, Dee
  3. The flash movie, Hope on the Horizon, is wonderful. The poem is very inspirational. It expresses our thoughts so well. Congratulations to ISN on its 5th anniversary! WOW. Shelley, you did a beautiful job on the artwork. I can't begin to imagine the thousands of hours you have put into this 5 yr. old baby!!! And now she is running! Thanks to you and everyone whom have given of themselves so generously to ISN. You are a fueling Scleroderma hope! For many more years (and strength), Dee
  4. Dee


    Dear Alexandra, Wow, have you ever been through the fire! And you are so young. I hope this new year will bring you lots of warm support. I know you will find it here and hopefully also find friends close by to give you a helping hand. Pain can be so debilitating. I admire your great attitude. Attitude really sets the direction we go, doesn't it? I hope you come here often. You will be understood and encouraged. By the way, you and my granddaughter share the same beautiful name. Warm hugs, Dee
  5. Irene, I'm so sorry you are suffering, but glad you are asking questions. I'll just add my two cents. Yes, I think you should definitely have your heart checked. Also the esophagus/GERD can really produce different kinds of chest pain: spasms, soreness, burning, etc. It can mimic a heart attack. It takes a doctor to differentiate. My husband and I both have severe esophageal problems. I would definitely mention the elevated liver enzymes to your rheumatologist. She may want you to see a gastroenterologist to rule out autoimmune liver disease such as PBC/primary billary cirrhosis or AH/autoimmune hepatitis. They are treated differently, so I would suggest a gastro liver specialist. The PBC has nothing to do with alcohol, it is an autoimmune disease somtimes associated with scleroderma. I've had two liver biopsies and my doctors still can't quite agree. I've been treated for both. I've taken Plaquenil for several years and it has given me back my life. I've had no side effects at all--just good results. The only side effect I've heard of is related to the eyes and that is very rare. Just get regular check-ups. It sounds to me that you are really aware of your body and family history. That is good. Just get everything checked-out so you can have peace of mind. This is the right place to share your concerns and get great support and info! Many blessings, Dee
  6. Thanks to everyone for the great information. This is such a helpful and smart group! Dee
  7. Hi, I have really missed participating for several weeks. I have had surgery which side-tracked me. Thankfully, I'm doing well. Yesterday I read a magazine article that gave incorrect information. The author wrote about a woman who had "systemic scleroderma, a fatal illness." I would like to respond, sharing that systemic scleroderma is usually not fatal. It would be very unfortunate for a scleroderma patient, family member or friend to labor under this misinformation. I know at first after my diagnosis, I felt I had been given a death sentence. As I became more informed, largely due to this great website, I gradually gained hope. I have improved and plan to have a long life! Can anyone direct me to accurate information about the survival rates for limited scleroderma? I'm sure from the description of symptoms, the woman in this article suffered from severe diffuse scleroderma, but that was not stated. Giving hope is one of the best tonics I know. Boy, I hate to think of someone suffering needlessly from misinformation. I figure Janey or Sherrill can probably locate anything! Many thanks, Dee
  8. A very interesting topic. I think the cause of my scleroderma is directly related to (1) genetic predeposition (my sister has lupus) and (2) exposure to a toxin that killed over 1000 people (when I lived in Spain). I think the scleroderma was perhaps "dormant?" But I have no doubt that my scleroderma was activated by a tremendous amount of (1) lack of sleep and (2) tremendous stress that I experienced 3 years ago. I spent months assisting my son as he went through a very messy divorce and caring for my grandaughter. He often said to me, "Mom, you don't ever sleep!" Sounds to me like there are possibly many triggers that vary from person-to-person, but I feel prolonged, excessive stress and lack of sleep are high triggers. Hugs to all, Dee
  9. Hi, Patty. I'm so sorry you have the horrible pain and fatigue again. It is very frustrating when all the options have negative effects. I have generally found there are no "perfect" solutions. Oh, how I wish there were!!! We sometimes have to evaluate the trade-offs. I've been on prednisone several times--the short term packets and also a low dose for a year. It helped tremendously. I've been off for a year with no side effects. Many times we just have to weigh the benefits and take the road that seems least negative to us and our doctors. Do you have confidence in your doctor? I would be inclined to follow your doctor's treatment. She sees the whole picture. The inflammation is not good for the body's organs either. Sounds like your doctor is monitoring you well. Hope you are able to enjoy the Holidays pain free (or almost)! Best wishes, Dee
  10. Hi, Irene, I totally agree with the suggestions you taper off slowly--20mg to nothing seems very abrupt to me. Just my opinion. I'm glad you are going to talk to your doctor. I have been on prednisone several times. Several times it was just a short dose of a week or so, but even so tapered. Another time I was on a low dose for a year and my tapering was like 5,4,3,2,1mg. Boy, do I remember that quick burst of energy! I got a lot of Holiday shopping and housecleaning done. Prednisone is sometimes the drug of choice. Really helped me. But my rheumatologist calls it a "double-edged sword" if you are on it a lot. Best wishes, Dee
  11. Beverly, Plaquenil turned my life around! The tremendous fatigue and pain have been greatly helped. But it does take months and takes effect gradually. I've taken it over two years. My sister has taken plaquenil for her lupus for years. I too feel it is safer than the prednisone. Prednisone had a quick and dramatic benefit. I felt a great surge in energy and shopped for hours (for the first time in a year). But my rheumatologist told me prednisons was a "double-edged sword." You don't want to be on prednisone long, at least in larger doses. I was gradually weaned off it. I hope you find the meds you need. Warm hugs, Dee
  12. Dear Rosa, My heart goes out to you! Your body is suffering and you have had dramatic changes in your dreams. I'm very glad you found us because info and support are so important. Everyone here is willing to help you. Heidi's suggestion to check out disability is a good idea. It is very natural that you feel down. Your life has changed dramatically. But, you still have a lot of potential! You are much more than just your body--your mind, personality, and friendship can still be productive. Give yourself time and permission to adjust, but also look to stay busy with things you enjoy. Do you enjoy reading? Music? Sports? It is very important to stay connected to people. Do you have someone you can share your feelings with? I would suggest a counselor--perhaps through community social services or your place of worship. It is great you have such wonderful care as Johns Hopkins! Perhaps a social worker there might have suggestions of resources for you? Maybe they can direct you to a scleroderma support group in your area. That is a good place to network with others. Take good care of yourself. Sending many hugs and blessings your way, Dee
  13. Congrats, Sweet!!! You are ideal for this position. I appreciate your encouraging, informative and thoughtful posts. You being a nurse, is just the cream on the top! You are a great asset for all of us. Thanks for all you do, Dee
  14. Thank you, Janey, for these articles. They are "right on." I do not have motility in the lower two-thirds of my esophagus. My rheumatologist fully understands, but I'm not too sure my gastro understands sclero. I've printed these articles to give him. I surely appreciate your helpful research! Warm wishes, Dee
  15. Tara, I would encourage you to go ahead and request it from your doctor. He/she will know both if you qualify and your doctor understands your condition. You have nothing to lose. It seems like I read something similar on my MO application and I wasn't sure if I qualified, but my doctor immediately gave me a signed application. I think DMV gives you the disability placard if your doctor thinks you need it. Best wishes, Dee
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