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Heidi

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About Heidi

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    Gold Member
  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. Wondering About Plaquenil

    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 medication I am taking....and haven't had any with the Plaquenil. I hope this has helped. Again, welcome! Warm wishes, Heidi
  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. Red Spots

    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 which is causing the rash? Maybe it doesn't' even matter... Thanks, Heidi
  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 anywhere. I will still participate as a member of the forums (just probably not with the same frequency as I do now). Warm wishes, Heidi
  7. Swollen Tongue

    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 as if I am slurring my speech. I wasn't sure if it was actually swollen, or if it was due to dry mouth, or what. So many possibilities..... Again, welcome! I do hope you will come here and post often and let us know if you are able to see a specialist and what they say. Warm wishes, Heidi
  8. Stomach Issues

    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. I'm New

    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, where it will or will not go. No one can predict the progression of the disease. I do think it is a positive thing that your doctor seems to be on top of trying to get a proper diagnosis. The most important thing, to me, is to get proper treament for current symptoms regardless of the actual diagnosis. Please do keep us posted! Again, welcome! Warm wishes, Heidi
  10. My Recent Dr.s Apt

    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. Localised Scleroderma

    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. I Walked 4 Miles Today

    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. First Cyclophosphamide Treatment.

    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
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