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Thread: Another new (but similar) story

  1. #11
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    What a wonderfull story Pmarsh!
    Welcome to the forum, please keep us updated every once in a while...
    Good luck, I hope you'll stay that fit.

  2. #12
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    Hi Pmarsh not that it matters i am from calgary. i was diagnosed in sept 2008 i had just turned 50and i thought i was going to die i have been on meds for the whole time i put on 40lbs and proud to say i have taken all the weight. i have always been in decent shape my wife and i joined a gym and i have never felt stronger and have not been as fit as i am today i go to a spin class and im the oldest one in it i can keep up with all those kids its awesome.my specialest told me im her healthiest sick patient. sine been diagnosed and put on meds i have felt great oh i had some side effects but all the people around me say its my posititive additude is why im doing so well. i have been fortunate not to miss any work. if you do a fundraiser for wegeners i wpold love to get involved. good luck

  3. #13
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    Good to hear from you Kelly. I'm glad that you were able to shed those pounds and get back into shape.
    Phil Berggren, dx 2003

  4. #14
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    I'm glad you're doing so well, Kelly. Your progress is amazing.

    I would take issue with the comment that the reason why you're doing so well is because of a positive attitude. It implies that if someone isn't doing well it's because they have a negative attitude. I think having a positive attitude is helpful, but it's not the whole story.

  5. #15
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    Quote Originally Posted by Sangye View Post
    I'm glad you're doing so well, Kelly. Your progress is amazing.

    I would take issue with the comment that the reason why you're doing so well is because of a positive attitude. It implies that if someone isn't doing well it's because they have a negative attitude. I think having a positive attitude is helpful, but it's not the whole story.

    I have to agree . i find my attitude is positive when I am doing well. The symptoms of wg less scary-dont know if this is the words i want-symptoms of wg like pain for me brang on alot of loneliness and almost depression. I woke up every morning feeling good and pain free. I would go into work so excited that i felt better. Two hours later it all returned usualy worse every time. This cycle sucked my soul right out of me. I try not to dwell on what is wrong and this is really easy to do during periods of remission. It is a different story when sick and the meds are not right. My attitude was however quite eurphoric when I was on 100mg of prednisone a day.
    leigh

  6. #16
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    Hey Kelly, welcome fellow Albertan... Your story sounds great. I just ordered a treadmill which should be in next week and I can't wait to start shedding those pred pounds, and bike season is almost upon us (aside from all the crazy snow in the last couple of weeks - ha ha) maybe a bike trip up the Icefields Parkway is in order this summer.

    I think that having a positive attitude is an absolute must with this disease. I know that everyone on this site does have a positive attitude which is why after looking at other places online regarding Wegener's this is where I've landed and have decided to stay. This is a complicated and mysterious disease that even science hasn't fully figured out so anything that allows us to have a better quality of life (be it physical or psychological) is more than welcome. There are so many variables to getting to a state of relative well being; how the disease has affected us, how the drugs affect us, what kind of medical team we have, what our condition was like before getting sick, and on and on....Placebo effect is scientifically documented and the placebo threshold for people is very individual. If someone believes that their positive attitude has had a great deal to do with their current health status, I don't think that should be discounted or on the flip side seen as a comment on someone else's attitude based on their health status.

    One of the things I really love about this forum is that everyone here speaks from their own experience and from the heart, without passing judgement on other members. I take what is applicable to my situation and disreagard what isn't knowing that sometime in the future it might be - knowing how WG operates. I love reading about people getting on the other side of the evilnesss of Wegs, and I can see why the feeling that having a positive attitude might have helped in some way. It gives you a sense of power knowing that there is something that you yourself might have done to help things along. It's one thing to trust the docs and pop a bunch of toxic pills, but if you think there is something that you can pull out from the depths and overcome in your own mind, then you feel like you're an active participant in your healing process, and I don't think that should be taken away from people.

    I think that all of us on this site would be much worse off if we weren't who we are - amazing people full of positive, wonderful energy, ready to share our experience and pain and growth with others. So I'm very happy and thankfull for all of the positive energy on here.

  7. #17
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    good point marta. If i could have chosen to be positive for the year pre diagnosis I would have but wg just kept shooting me down. I wanted to feel positive but the pain was overwhelming.

    leigh

  8. #18
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    I agree with you Leigh, I felt the same pre diagnosis. I'm sure most of us did. I have read some replies to the survey that have made me cry about how people were made to feel before diagnosis. What I'm talking about is post diagnosis. I was thrilled to get a diagnosis of Wegener's. It wasn't the diagnosis they gave me the first night at emerg which was secondary lung cancer. I felt I could overcome Wegener's and also watch my little girl grow up and spend more time with my amazing husband and wonderful family. I've always been a happy, smiley person, and it was funny in the hospital because the nurses and docs regularly commented on my attitude. It sure makes life a lot more fun and easy to deal with and the people in your life more likely to want to hang out with you and help when help is needed. I have found a positive attitude to be a definite benefit in my personal experience.

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    I was diagnosed 10 years ago and there was no forum to help out and doctors all sounded like they were reading the same info off of the internet that I was. There was a mailing group I did belong too that i often wonder if anyone here was a part of. I was 28 and much younger than most of the others. I was alone but definitely less negative than I was for the year + prior to diagnosis. None of my friends even really know I have a disease at all. the only time it ever comes up is when they say things like "do you want more children?." or "why did you only have one child?" my personal favorite "do you think it is fair to not give your child a sibling"? If i get mad then i tell them i cant and then that leads to why. oh i guess i am off topic. but my point is wg does not get me down as much as i kinda scares the crap out of me.

  10. #20
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    I do agree that a positive attitude is beneficial and has a lot to do with healing, I'm glad to see when people have it. My point was that it isn't the only thing affecting one's recovery. My friends always remark on what a good attitude I have. I'm always the one laughing the most, including about Wegs and everything I've gone through with it. I get up every day expecting to feel better, to have turned a corner at last. And yet I have had 6 years of unceasing pain, weakness and more complications than I can list. It has never let up, not for one day. So when I hear someone say how wonderful they're doing and how they've gotten their whole life back and it's all because they're so positive it pushes a button for me. I mean, Gilda Radner died of ovarian cancer. Was she just not happy enough?

    I don't mean it to be personal against anyone or to keep anyone from sharing their feelings. I just feel it's fair to share mine as well. There is much more going on that determines one's outcome.

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