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Everything posted by KayTee

  1. KayTee

    Gene Ensz had Lung Transplant

    Wonderful news. Best wishes from a speedy recovery.
  2. KayTee

    Just diagnosed

    Hi Susie: I'm so glad you talked to your children and hopefully found some peace of mind. I also used the web to send a more informative email after I had spoken to them directly. What did we ever do without it? One of my sons said very directly: I am no longer a child. I have a job, career and family, and you do not need to keep anything hidden from me because you worry about how I feel. I will be there for you. Needless to say - lots of tears. But good ones. Stay in touch and best wishes.
  3. KayTee


    Thanks to all who recommended I journey further to see a scleroderma expert. I got an appointment the very next day and spent over an hour with rheumatologists at a university hospital scleroderma center. They were thorough, informative, kind and professional. They talked to me about what they were seeing? And had lots of questions for me! Tests have been ordered, I'm already on new meds, and most importantly I feel much more hopeful. The difference between the visit to my local rheumatologist and the scleroderma center is like night and day.
  4. I replaced the kitchen flatware (knives, forks and spoons) with a gently rounded and lightweight set because the fluted edges of my old set hurt my fingers.
  5. KayTee

    Just diagnosed

    Hi Susie: LIke you I had always thought of myself as a problem-solver, strong and independent. And I also found it very difficult to talk to family or friends about this disease. I'm still working on it. I kept the diagnosis to myself for a month, and looking back, I was spiraling inward and downward. My husband insisted I start telling our (adult) children and other family members. He was right. It was difficult to do - and there were lots of tears - but I did feel better and more hopeful after. Good luck and best wishes.
  6. KayTee

    digital sympathectomy

    Hi: I had a left hand sympathectomy March 2009 -and I'm left-handed. (The surgeon also did carpal tunnel at the same time.) It did help restore circulation to a badly eroded finger although I know it's not a permanent cure. And I didn't know I had CREST then either. Your other hand will suddenly become very adept and take over when you need to. The pain was very manageable and I thought the headache from the anesthesia was worse than the hand. The hardest part for me was trying to grip a hairbrush. Fortunately I had anticipated some problems and had my hair trimmed before the operation. Physical therapy helped a lot after my hand was healed. Best wishes.
  7. KayTee


    Hi everyone: I was diagnosed last November with scleroderma CREST which I've probably had for years. I had Raynaud's all my life but it suddenly got a lot worse with my fingers in serious trouble. After a sympathectomy it was discovered I am missing the arching part of the ulnar artery in both hands. I've got lots more finger problems along with a digital ulcer. Anyway - I'm looking for a rheumatologist I feel comfortable with. I have a local appointment, but also know there is a research based scleroderma division at a hospital two hours away. Any thoughts on how workable this is for the number of times I would need to go there, have tests etc? I'm also a breast cancer survivor of 6 years. Looking forward to virtual warmth. KayTee
  8. KayTee


    Thank you. I love the idea of making it a fun weekend instead of another doctor visit. And thank you also for such a comprehensive site.
  9. KayTee


    That is almost exactly what happened to me with the local rheumatologist. I'm definitely going to the experts now.