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Thread: Takin a Break

  1. #1
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    Default Takin a Break

    Hey, havent been on in awhile. Trying to do my own thing and live life. Just thought the forums were getting a bit too negative for me, and I needed a break. Been working on feeling out the way my body works, and actually, have been improving quite a bit. I still believe boosting my immune system is the only way to beat this and so far, its working. My vasculitus is getting better, leg cramps are practically gone, energy is up, and my overall well being has improved. I see the specialist next month and im hoping to not only lower my prednisone, but avoid the cytoxin all together. My family doctor is amazed at how well im doing. All my blood work is normal, and i avoided taking a huge round of antibiotics when i had a vasculitus flare up. Just took care of it myself with topical treatments and didnt have to run those pesky antibiotics thru me. I truley believe there is a cure, and im still on the search... I know everyone is different and you have to know your body. I know mine. I will beat this. Sorry if I dont come on much, just need to stay away from being told what im doing is wrong. I appreciate the help, but no one has an answer, and no one is the same. We should all be positive and never accept that we have to face life with "a new normal", its a "temporary normal". Take care everyone!
    Georgia In Ohio... On a Mission for Remission!

  2. #2
    Doug Guest

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    Any advice given on this forum is meant in the best spirit, and reflects our best knowledge of this disease. If telling you there are no studies supporting a holistic approach to WG care seems negative, the risk to your life for ignoring it fits into a 95%/will harm, 5%/won't harm range now. (Those numbers probably are wildly off- to me 100% holistic is harmful, but that's because there's no supporting studies. With supporting studies, perhaps a blend of traditional and nontraditional approaches will work best- that's your "search for a cure" zone, as I recall things you've tried or wanted to try.) Perhaps the two, three weggie deaths in the period just before and after you came on the forum draw a cloud of precaution over our remarks, too. No matter how positive a person is- I feel I am very positive, but not giddily so- the fact remains, about 8% of weggies don't survive that two year mark (whatever that means). Perhaps you did the very thing you should do if you feel the forum is holding you back and down, but know that you always will be welcome back with your news. Who knows? With your will, your very positive attitude, isn't a lot possible? (I'm not telling you to stop doing anything you want to try or trying to hold you back or be negative, but I am one of the people who hopes you go into the forest armed for all contingencies because Wegener's is a killer.)

  3. #3
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    Hi Georgia In Ohio!
    I'm new to the forums.
    What have you been doing that's different? I'd love to know!
    Glad to read things are as well!

  4. #4
    Doug Guest

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    Ashley, you'll find a lot of Georgia's contributions in the "New Member Introductions" and "General WG Chat" categories. Go first to "Home", then select the two categories above. You'll have to do so searching, but this is a good way to get not only her comments but the responses, which, as you've read, mostly discouraged her from trying holistic medicine of one sort or another. She also mentions things she tried that helped her deal with WG issues. Her avatar is distinctive, so you shouldn't have any difficulty finding them. Or skipping the negative comments, if you chose.

  5. #5
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    Thanks Doug, I'll try searching right now!!
    Hope all is well!

  6. #6
    Doug Guest

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    I'm in remission, so you know I feel pretty spunky just now!

  7. #7
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    A positive attitude is 50% of the answer to many diseases, I've seen at least a couple of people die through their lack of it . For this reason alone, I would not stand in the way of anyone trying an alternative approach, but they must be aware of the statistics. This disease had a near 100% fatality rate before the current chemo / steroid treatment regime was discovered.

  8. #8
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    Georgia, good luck in keeping in remission for as long as you can. Who knows what our bodies are capable of, you may be one of the very few that stay in remission for a long time. Do not forget however that is was the dreaded mainstream meds that helped you to where you are now.
    Jolanta

  9. #9
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    Well Georgia, no one can accuse you of not being positive :-)

    I do hope you continue to feel better. Know that advice on this forum is given with the best intentions and with your best interests in mind. No one knows more than us Weggies that everyone is different so I think I speak for everyone when I say that your continued wellbeing is important to us.

    Continue to feel better and please, if you feel like it, report back and let us know your progress!
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

  10. #10
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    georgia i wish you well with your quest.please keep in touch.
    john.

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