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Thread: The Weggie Book - tell your story time

  1. #1
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    Default The Weggie Book - tell your story time

    Hi gang,

    I've put together an outline for OUR Weggie Book. I've sent it to a few of you that I know were interested, and have requested email accounts for those who I can't send an email to via the forum.

    If you didn't get a message from me, and would like to participate, please send me a message telling me so and I'll make sure I send you the outline.

    I'm going to lay it out (that's what I use to do before I got knocked out with the WG stick) and make it something special. Or I'll do my best anyways.

    I'm thinking that we can get the thought process going, and if we give ourselves until late spring to put it together then it wouldn't be too unrealisitc....

    Looking forward to hearing from you.

    marta

  2. #2
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    Thanks Marta,

    I got your e-mail and hopefully will start typing away sometime soon. I just felt like crap today. Chest pains, left side of face hurts when swallowing, and low energy.

  3. #3
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    Absolutely no rush. I find that if I think about this stuff too much, I end up dreaming about it, and hey, who needs to deal with it in your life and in your dreams.

    Baby steps. Just like dealing with the nastiness. Baby baby steps.

    Hope you're feeling better tomorrow Phil. I know what you're talking about cuz I've been feeling absolutely awful the last few days. Super gross, I needed to get my mind off how I'm feeling so that's why I'm doing this.

    Take care.
    m

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    Phil, get to a doctor soon if your having chest pain. It could be anything.....

  5. #5
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    The chest pain went away on its own fairly quickly over about 20 to 30 minutes. I feel better now but mostly just tired.

  6. #6
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    Phil, I'm worried that the Wegs is getting more active. Are you completely off cellcept and pred now?

  7. #7
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    I am a little worried too.

    I am back up to 2g per day of Cellcept from tapering down to 500mg. My doc wanted to play it safe an up it back to 2g because my PR3 screening came back positive for the first time in many months. On monday we should have the actual titer results. My last few C-ANCAs have been 4 or 5.

    My white cell count is also up a bit and it is mostly the neutrophils that are up. So I may have another infection going on. My doc was worried about this as well and asked me a bunch of questions and what sympotms I had. I have had a bit of diareha the last 2 to 4 days, but nothing serious, more just really loose stools with a bit of blood in the last 2, but I am sure it is just an old anal fissure that is acting up.

    I am back up to 10mg of pred as well. My CRP is climbing the last 10 days or so. But my ESR is remaining around 5 to 10. So we will continue to monitor those 2 every MWF along with CBC, renal function, and electrolytes. And ANCA, C3, C4, and liver function panel, and sputum every Friday. Will see how the next few days go and should know more next week as to what the blood results are and what to do about the Amikacin wrecking my hearing.

  8. #8
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    Phil,
    You are seeing a Wegs specialist now right? I'm worried about you. Wish I could do something...I'll send you light and energy.I hope the Weg Dog goes back to sleep soon.

  9. #9
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    Phil
    hope you get some answers monday take care of you

  10. #10
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    Yes, I have a Wegs Specialist right in town here. He is monitoring everything very closely. I will talk to him next week a couple of times again.

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