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Thread: Eastern USA?

  1. #11
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    There goes Doug, playing with fire again.

  2. #12
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    I am in and yes Doug...I too felt blessed to be able to meet in real time another WEGGIE
    Lisa

  3. #13
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    I will try to get her to join. She is still adjusting to the meds and has been having difficulty with walking up stairs and since it is in her lung she is short of breathe. She is currently on the prednisone and a cancer drug that starts with a C and she is also on bactrium. She does have a WG specialist who is a rhuematologist and her G.P. is keeping close tabs on her , as she is the first patient he has ever had. The good thing is that they caught it when she was in the hoptital for what they thought was just dehydration from sinusitis and then the round of x-rays and tests finally told them that she may actually have WG .. They sent the blood off to Hershey and Geisngers and had it confirmed. She just got fitted for hearing aids and now can hear much better. I think the hardest part is that she was such an independant person and this came on at the same time that my dad was being treated for throat cancer ..

  4. #14
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    the next thing will be weggie summer camp.
    john.

  5. #15
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    (Weggie summer camp. I dunno. I think we'd flip the canoes....)

    lbrant : The chemo drug is Cytoxan (aka cyclophosphamide). We often abbreviate it as ctx or cyclo on here. It's rough stuff.

    It's incredibly difficult to go from being an independent person to someone who needs so much help. We've all had to struggle with that. It's one of the many things your mom will have to grieve. Even when treatment goes well, so much is changed and lost once you get an illness like this.

  6. #16
    Doug Guest

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    Quote Originally Posted by coffeelover View Post
    I am in and yes Doug...I too felt blessed to be able to meet in real time another WEGGIE
    Lisa
    It is unimaginable, a totally unreal experience akin to running a sub-four-minute mile. I'm excited for our friends on the East Coast!
    Last edited by Doug; 07-30-2009 at 12:24 PM.

  7. #17
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    I live in Greenville South Carolina
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    im in Greenville South Carolina.... i'm going to wight my story as soon as i fugure out how..lol
    Summer

  8. #18
    Doug Guest

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    Quote Originally Posted by sumsum5587 View Post
    im in Greenville South Carolina.... i'm going to wight my story as soon as i fugure out how..lol
    Summer-

    Writing your story is as simple as applying these basic questions used by journalists:

    Who?: (you)
    What?: (had symptoms- describe them- then were diagnosed with WG)
    When?: (?)
    Where?: (town, hospital, whatever advances your story best)
    Why?: (Wouldn't we all like an answer to this question?)
    How?: (tests or procedures your doctors use to diagnose your WG, for example)

    Other questions can come out of these basic ones. For example, (Who?) was affected (How?) by (What?) aspect of this diagnoses?

    No one will mock you or make fun of you if you have difficulty expressing yourself in writing. Whatever you write will be your story, and, most likely, the story, in part, of others. It will help us understand why you came to the forum, what it is we can do to help you deal with this disease.

    Give it a try!

  9. #19
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    I live in Greenville South Carolina
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    ok im not good at writing but ill give it a try...
    Summer

  10. #20
    Doug Guest

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    Quote Originally Posted by sumsum5587 View Post
    ok im not good at writing but ill give it a try...
    Good for you! When you are ready to post it, we'll be here! This isn't an English composition class or Journalism 101, so spelling, punctuation, grammatical correctness (ouch!) or any of the other bugaboos that haunt you don't matter: there is no grade to give, just comments or suggestions related to our BFF, WG and your experience with it.

    p.s. It doesn't have to be 500-1000 words long, single-spaced, either, just as many words as you need to tell your experience with WG. In fact, if you suffer permanent shyness, that's OK, too!
    Last edited by Doug; 08-06-2009 at 11:55 AM.

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