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Everything posted by Heidi

  1. Hi everyone, Thank you so much for all of your kind words!! Reading all of your replies brought tears to my eyes and warmth to my heart. This really is the greatest place for encouragement and support thanks to all of you!! I will be offline for a few weeks, but then I promise to be back to check in once and while. Wishing each of you the very best of everything. Much love, Heidi
  2. Hi Michele, Welcome to the forums! I am glad you have found us, but sorry it is because of your scleroderma. I have been taking Plaquenil for about 4 or 5 years now and it has been a wonder drug for me. It helped so much with my fatigue and all over body pain. It took about 6 -8 weeks to work and then it was only very gradually that I noticed an improvement. I have read that Plaquenil is a DMARD (Disease Modifying Anti-Rheumatic Disease) and that it works by decreasing internal inflammation. In general, I am very sensitive to medications and almost ALWAYS get side effects of any medi
  3. HI Patty, Overall, it does sound like it was a good appointment. I am glad you got to see the intern first and he was able to help your regular doctor realize that you needed some changes to your treatment! I am so glad she has agreed to lower your prednisone. I certainly hope that helps you to feel better and you can lose some of that weight. So, what did the doctors decide about your elevated enzymes? And what about the rash...is that just part and parcel of the dermatomyositis? Please keep us posted on how you are doing? Warm wishes, Heidi
  4. Hi Sweet, I too break out in a rash if I am exposed to the sun......right now my hands are covered with dry, raised scaly patches and my neck is just clearing up from little tiny bumps (when I get it on my neck, I can feel it more then see it and it is very itchy). It happens even when I am barely exposed to the sun (e.g., driving in my car and having the sun come through the window). I have always wondered if it was Lupus OR a drug reaction as I know it happens with Plaquenil and I take Plaquenil. So, my question to you, is since you have both Lupus and take Plaquenil, how do you know w
  5. Carrie, Thank you so much for taking on this role. You are going to be so great as the manager! I can not tell you enough how relieved I am for you to be taking on this responsibility as it allows me to attend to "home fires" without feeling like I have left the forums in "a lurch". You are so perfect for this position and thanks to your willingness to give so much of your time, I am able to resign with peace in my heart! Thank you! Warm wishes, Heidi
  6. Hi everybody, Due to life complications (not my health........right now things are stable for me with my health), I am stepping down as the Manager of the Forums effective Friday, May 18th. I am also taking an extended leave of absence from my position as a support specialist. I have greatly enjoyed being the manager of the forums and working with each of you. You all are the greatest support group a person could ask for. You made my job so easy! So, thank you, thank you, thank you to each of you! I will miss interacting with you all in the capacity of manager, but I am not going a
  7. Hi Claude, Welcome to the forums! I am glad you found us and posted your first message, but sorry it is because of your symptoms. As Jefa told you, an ANA is supposed to be used as just one marker/indicator of scleroderma and used in conjunction with one's clinicall symptoms in making a diagnosis. Also as Jefa suggested, you may want to see a rheumatologist and one specializing in scleroderma would be the best. It is interesting that you mention your tongue swelling....mine has felt like it is swollen (especially in the mornings) for about 3-4 months now....to the point that I sometimes feel
  8. Hi Margaret, He could be trying to indicate a feeling of being full or bloated that may come from a slow empyting stomach. The test the do is a gastric empyting test. When I had the test, I had to eat a little bit of scrambled egg with some type of radioactive substance in it. Then I had to stand against an X-ray machine while they took some pictures of my GI tract to see where the egg substance was. They called me in and took pictures about every 15-20 minutes until the egg substance had passed through. It was a very easy, non-invasive test. Warm wishes, Heidi
  9. Hi Janice, Welcome to the forums! I am glad you found us, but sorry it is because you might have scleroderma? What symptoms are you currently experiencing? It is so normal to be frightened...I think waiting and not knowing are some of the hardest things. But, hopefully from reading this forums you have come to realize that many of us lead very full lives despite having this disease. AND, it affects each one of us so differently! Thus, even if the doctor does confirm a diagnosis of scleroderma, that does not really tell you anything with regard to what the disease will or will not do, w
  10. Hi Erin, That all sounds great! Isn't it wonderful to find a doctor who is really interested and invested in you! I am so glad the appointment with the GI doctor went so well. I do hope you can find the source of the anemia and get it appropriately treated. Please do keep us updated on the outcome of all the tests. Warm wishes, Heidi
  11. Hi Gordon, Welcome to the forums! I am so glad you found us and have been reading and getting lots of information. I am just sorry you are here because of your suspicions of having scleroderma. Please do let us know what the skin biopsy shows! I am sure you will find everyone here very warm, supportive, and encouraging. And there is so much information here. So, just ask away. Again, welcome! Warm wishes, Heidi
  12. Hi Azrose, Welcome to the forums! I am so glad you have decided to join us and post your first message....just so sorry it is because you now have morphea. I don't have any personal experince with morphea, so can't answer your questions, but wanted to extend an official welcome! There are others here who do have morphea and I am sure they will be chiming in shortly. Again, welcome! Warm wishes, Heidi
  13. Hi Rosa, Congrats! That is such awesome news. I am so glad you posted and shared that with us all. There is nothing like hope to keep us all going! Keep up the good work. Warm wishes, Heidi
  14. Hi, Thanks for the update. It is good to hear that all went well. Hopefully there is some improvement in his symptoms after a few treatments. Please do keep us posted. Warm wishes, Heidi
  15. HI Charlene, I saw your first post on another thread and wanted to take a minute to officially welcome yo to the forums! I am so glad you found us, but sorry it is because you have scleroderma. I am sure you will find everyone here very warm and supportive with lots of great information and advice. Again, welcome! Warm wishes, Heidi
  16. Hi Nan, I am so sorry to hear that you had another bleed...and now have to go through that (I assume you mean the cauterization) every 4 weeks! No fun! Will each time require a stay in the hospital? I really admire your great sense of humor! Warm wishes, Heidi
  17. Hi Erin, Welcome to the moderating team! We are so happy to have you join us! You are going to be a great addition to the team! Warm wishes, Heidi
  18. Welcome to the Support Specialists Team, Carrie! We are so happy to have you join us and know you will do a fabulous job! Warm wishes, Heidi
  19. Congrats Lisa! That is so wonderful! Thank-you for spearheading this. I too am enjoying my purchases and was so happy that part of the proceeds could go to such a worthy cause! Warm wishes, Heidi
  20. Hi Sue, Welcome to the Forums! I am glad you have found us and decided to join, but sorry it is because of your recent diagnosis of Morphea. You are definitely in the right place. I don't know if you have read a lot, but we have a lot of great information on our Sclero site about Morphea. I agree with Carolyn, that you might want to seek the advice/treatment of a rheumatologist. I hope you find this information helpful. Again, welcome! Warm wishes, Heidi
  21. Hi William, Welcome to the forums! We are glad to have you join us, but sorry it is because you have scleroderma. You ask a question many of us have spent a great deal of time pondering...what caused this disease in us? As Peanut said, there does not seem to be any ONE cause for scleroderma. Here is a link from our Sclero A to Z web page that talks about the research looking into the cause of Scleroderma and lists all kinds of possible causes. I hope you find this information helpful. Again, welcome! Warm wishes, Heidi
  22. Hi Birdie, Welcome to the forums! I am glad you have found us and joined in, but so sorry it is because of your symptoms. Are you under the care of a rheumatologist? I ask because you fear you might have scleroderma, but aren't sure. Perhaps a rheumatologist could give you a definitive answer and help with understanding what is going on with your body. I do hope you can find some relief soon! Again, welcome! Warm wishes, Heidi
  23. Oh, Patty, I am so sorry to hear about your step-daughter. Were you able to get her into a better hospital? When you get the chance please post and let us know how she is and how you are doing. I certainly hope you aren't feeling any worse! I am sending lots of positive thoughts your ways. Warm wishes, Heidi
  24. Hi Jackie, I am so sorry to hear of your frustrations in trying to figure out the pain! I hate when I have something going on and the tests all come back normal.....it is so frustrating! I wish I did have some advice on what to do. Just know that you are in my thoughts. Warm wishes, Heidi
  25. Hi Irene, I am so sorry you had such a rough day yesterday and the appointment was not at all what you expected. How frustrating! Did you ask why you weren't seeing the person you thought you had set the appointment with? Any chance of getting in to see him since he seems to be the diagnostician of the group? I sure hope things are looking up for you today! I am sending you lots of positive thoughts. Warm wishes, Heidi
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