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Thread: What the Newly-Diagnosed Need to Know

  1. #21
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    Ya either way i'll never really know. thanks for the info

  2. #22
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  3. #23
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    lol sorry Sangye!!

  4. #24
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    Ya! You don't want to piss Mr. Putin off. After all he is the most powerful man on earth.

  5. #25
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    lol indeed

  6. #26
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    I'm serious. This thread is for people new to Wegs--something they can skim through quickly when they're first diagnosed and feeling overwhelmed. Can we please just keep it free of chit-chat? Please add things that help them.

  7. #27
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    4 new people. i am still kinda new 2 this but find it importent 2 say that prednisone can greatly slow the healing proses and it would be a good idea to try and taper off it at all possible before surgeries. I was told this and assumed I would take a few more weeks to heal...what should have been a handful of days took over a month. It is really important to never forget it will get better eventually.
    Experience is the only way to survive. <3 Rini Orange

  8. #28
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    Very good advice Rini!
    Phil Berggren, dx 2003

  9. #29
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    Healing is a concern when you have surgery, but in my case I had no choice because my Wegeners was very active. I knew that my healing was going to take longer, than normal. I had a open lung surgery throught video. ( VATS).

  10. #30
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    some more things:
    1. do blood tests regularly, not less then once in a month.
    2. find or "create" a team of docs for every "organ" infected. be sure they are available when it is an emergency.
    3. listen to your body and be alert to symptoms. dont ignore them. dont wait too much when they are worsening. If you catch them early, it is easier to treat them.
    4. dont do flu shot !
    5. stay away from places full of germs etc. for example, if you need to do blood test come early when there are not yet a lot of sick people in the laboratory.
    6. walk everyday or have some other sport regularly.
    7. avoid stress if you can.
    8. go to psychotherapy, if you can afford it.
    9. eat only health food.
    10. write in this forum
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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