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Devonsnana

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About Devonsnana

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    Newbie

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    Nahunta, Georgia

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  1. Devonsnana

    Diagnosis of Systemic Scleroderma

    Shelley, Thank you for your kind words and even though a double edged sword, just knowing what I am dealing with has reduced much stress as I can now say what is wrong instead of just "They (the doctors) just don't know." I am at present attempting to put my team together in this local area while awaiting the only Rheumatologist in the area that has any experience with scleroderma. Since I already have a cardiologist, dermatologist, orthopedist, and nephrologist, I am trying to secure a pulmonologist and gastroenterologist. I just hope that once the team is in place things will slow down a bit. Barb
  2. Devonsnana

    Diagnosis of Systemic Scleroderma

    Quiltfairy and Dimarzio, I am lucky in the sense I have a good support system. My fiance`and daughter try, but wish they would without me having to ask. I have no one outside them to speak to and I just graduated with my master's in psychology so I can guarantee I will not be drugged unnecessarily. Even with all the physical problems I have decided to continue my education for licensure in my state of Georgia. With all the other medical diagnoses and being a 5 time cancer survivor I took a different look on life than many. When I first posted I was scared and unsure and failed to remember my own outlook. I have my head on straight but it greatly helps blogging here with you all. Knowing you're not alone aids in increasing the ability to deal with the issues we all face.
  3. Devonsnana

    Diagnosis of Systemic Scleroderma

    Quiltfairy, I know the disability site well. I will probably end up filing some day, but still hold hopes to locating a job as the pain is more bearable when I have other things to take the focus off myself. As for a therapist, there is only a couple in the area so getting in is difficult. We are actually weighing the possibility of relocating so I will be nearing proper medical facilities. I keep records out of habit as I am finding with the last round of flare (this time lasting over 4 years), I am unable to remember like I use to, so I keep a daily journal of pains, tests, doctors. visits, feelings, and medications. Thank you for your kind words.
  4. Devonsnana

    Diagnosis of Systemic Scleroderma

    Dimarzio, I have the same issues here. I have been fighting for over 20 years with one ailment after another with so many diagnoses I could write a book. Treat the symptom and forget the cause seems to be the mindset of the doctors here. I have a minimum of a 1 hour travel just to the local doctors but must go further if anything is outside the normal. The only blessing is it seems the pain is ebbing with the aid of NSAIDs. I have cycled for years and know that it will return and each time is longer then the time before. I wish you luck but keep pursuing a doctor to help.
  5. Devonsnana

    Diagnosis of Systemic Scleroderma

    Thank you Joelf for the kind words. I am all too familiar with the diagnosis, un-diagnosis process. Unfortunately for me the MUSC is over 4 hours away. I know that the progress is different for everyone and am reading everything I can get my hands on so I am not totally blind-sided by what might come. I had never heard of Scleroderma until 2 weeks ago but am accepting the diagnosis at the present time and preparing for life changes.
  6. Hello everyone, I am extremely new to this site as just received the diagnosis of systemic scleroderma last week. I have had medical issues my entire 59 years of life with many diagnoses only to have the diagnosis reversed. I have been told Lupus, MS, RA. This last diagnosis came after 4 years of extreme inflammation in both arms and legs. Some days, just getting dressed is impossible. I have been told my liver, lungs, cardio are all involved. I am scared, unable to find work that will accommodate the physical conditions and not sure what to do as I am separated and husband can cancel insurance at anytime. There is no specialist within a reasonable travel time for me and I wonder what is in store now.
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