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Thread: Arrrgggg! Its got me..... or is it I got it?

  1. #11
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    Hi Hammy,

    Welcome! I concur with the "slow and steady" advice. Believe me, I fought it for a while, but then starting to listen to my body and not worry about keeping up and I feel good!
    Lisa Coffeelover

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    Coffeelover are you in remission yet? Sorry I can't remember.

  3. #13
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    I wish....but no! I had a very short supposed remission....but flared up rather quickly and I now have stenosis again, but not bad enough to have surgery. Darn Flares!
    My goal is to not have a trach put in again...so I am going to behave and succumb to this disease. It may be winning now, but I will win in the long run.

    Thanks for asking. How are you doing?

  4. #14
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    "It may be winning now, but I will win in the long run"

    Just how I feel coffeelover. Having tried 'Ha, I'm not really ill and I can carry on as norm' method, I am quickly realising that i have to play along with Wg to hopefully beat it!!

    Oh thanks for your welcome, love your aviator... are you really that cute??

  5. #15
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    I am doing ok, just know that I am boderline to going into remission, but can't quite make it yet. So I see the Wegeners specialist in a few weeks. So I will talk to her soon. Just having sinus stuff like a cold on and off....so wegeners is still active. The good news is no lung nodule and my left eye swelling improved. I found out I have cataracts. Thanks for asking.

  6. #16
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    Hi
    I think I have finally decided to accept the disease too. I pushed it a bit this week to try to be "normal"and ended up with lots of joint pain, head pain and extreme lethagy. Instead of looking at this as a negative Ive decided Im going to be a "spontaneous" person. If I feel okay on the day I will do, if not I wont. Given up making plans and cancelling. Im finally learning to listen to the body. ( I do wish it would stop groaning). Trying to hang in there on the taper to 15mg of Pred.
    cheers Col 23

  7. #17
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    Quote Originally Posted by Hammy8241 View Post
    "It may be winning now, but I will win in the long run"


    love your aviator... are you really that cute??
    Yes, she really is that cute!

  8. #18
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    Quote Originally Posted by Hammy8241 View Post
    "It may be winning now, but I will win in the long run"

    Just how I feel coffeelover. Having tried 'Ha, I'm not really ill and I can carry on as norm' method, I am quickly realising that i have to play along with Wg to hopefully beat it!!

    Oh thanks for your welcome, love your aviator... are you really that cute??
    Honestly, I am not at all cute...but have always had a passion for tweety!
    Lisa

  9. #19
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    Quote Originally Posted by elephant View Post
    I am doing ok, just know that I am boderline to going into remission, but can't quite make it yet. So I see the Wegeners specialist in a few weeks. So I will talk to her soon. Just having sinus stuff like a cold on and off....so wegeners is still active. The good news is no lung nodule and my left eye swelling improved. I found out I have cataracts. Thanks for asking.
    Keep moving forward elephant! I am rooting for you!

  10. #20
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    Thanks Coffeelover!

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