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Thread: Another new (but similar) story

  1. #31
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    Thanks BARON.
    Last edited by DEE; 04-28-2011 at 03:04 AM.

  2. #32
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    Baron, that was so sweet. You and Dee are a wonderful couple. Dee, I hope you get into remission soon, and I hope the other complications settle down, too.

  3. #33
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    Marta - It was not my intent to cause trouble by posting how I was feeling - but clearly I did, and for that I sincerely apologize. I simply wanted to express MY feelings. I felt that the implication was....... that if we just had a positive attitude, that we may achieve a healthy status faster - and that stung a little. A positive attitude is always preferable, and certainly I feel empowered when I wake to see the sun shining, and find myself in a good mood. But that's not going to cure me.

    Again, I apologize, but I felt the need to say what I was feeling. Let's not ever feel like we can't say what we're feeling. And, please don't stay away over this! We should all be able to just "agree to disagree" at some point.

  4. #34
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    What ChrisG said.

  5. #35
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    Thanks ladies.
    I also felt I had to speak my mind, something I promised myself I would do a year ago while laying in a hospital bed being told I'm not gonna make it.

    Thanks for all the personal messages and emails as well. You guys are my extended family - I've said that on more than one occasion, and I have benefited tremendously from all of your advice and experiences.

    Pmarsh and Kelly, please come back and tell us more, we need to hear every side of the Wegener's spectrum on this forum....the good, the bad and the snotty (sorry, I couldn't resist)

  6. #36
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    Quote Originally Posted by marta View Post
    the good, the bad and the snotty (sorry, I couldn't resist)
    Maybe we could do a movie and Clint Eastwood will direct it for us! LOL
    Phil Berggren, dx 2003

  7. #37
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    Quote Originally Posted by marta View Post
    Pmarsh and Kelly, please come back and tell us more, we need to hear every side of the Wegener's spectrum on this forum
    I agree totally. To a newcomer this Forum can appear cliquey with some dominant personalities with outspoken views, however one thing I have learnt during the past 3 years is the utter diversity of syptoms, treatment and individual attitudes to this disease which AFFECTS US ALL! We are all in the same boat, some of us are lying in the scuppers, too weak to move, whilst others, like Marta, are putting in a shift on the oars trying to get us somewhere (witness the Wegs Clothing and the Book to raise awareness of our condition) If it helps her by adopting and supporting a positive attitude, then so be it. What works for one doesnt necessarily do for another (you only have to look around this forum and the range of meds)

    Nowhere has it been stated that a positive attitude is all one needs to overcome Wegs, but one thing for sure is that a NEGATIVE attitude will never help anyone and thats for sure.
    Last edited by Geoff; 04-28-2011 at 11:47 PM. Reason: Grammar!!

  8. #38
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    I 'heart' you Geoff!!!

  9. #39
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    Quote Originally Posted by marta View Post
    Thanks ladies.
    I also felt I had to speak my mind, something I promised myself I would do a year ago while laying in a hospital bed being told I'm not gonna make it.

    Thanks for all the personal messages and emails as well. You guys are my extended family - I've said that on more than one occasion, and I have benefited tremendously from all of your advice and experiences.

    Pmarsh and Kelly, please come back and tell us more, we need to hear every side of the Wegener's spectrum on this forum....the good, the bad and the snotty (sorry, I couldn't resist)
    Gonna second this. We already seem, and naturally so I suppose, to lose our successes from the forum. I think, and especially for the newly diagnosed, it's a relief to know that some folks respond very well to the treatment. I'm blessed in that I seem to be falling into that category. The sucesses I read about last year kept me from getting too terrified after inially reading the horrible "Survival Rate" information on Wikipedia first .

    Also we need our warriors as well that have been fighting for a while. My heart breaks for Phil and Sangye regularly for their long fights with apparently limited successes. Because of our diversity we actually can provide so many different viewpoints.

    Snotty since May of 2010
    ~ Bob

  10. #40
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    Quote Originally Posted by Psyborg View Post
    The sucesses I read about last year kept me from getting too terrified after inially reading the horrible "Survival Rate" information on Wikipedia first.
    Quite right Bob; I will never forget the look on my Daughters face when she visited me in Hospital after 'Googling' Wegeners. There is no point in turning a blind eye to the information on the web, but this forum can provide a better balanced viewpoint, especially when it comes to patients with an improving condition, unlike everything we see and hear thru the Media where Good News is No News!!
    Last edited by Geoff; 04-29-2011 at 12:50 AM.

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