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Dee

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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 prob
  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. 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 bill
  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 d
  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!"
  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 docto
  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 "doubl
  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
  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 b
  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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