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Thread: Osiyo (Cherokee hi) from new member, Awi Usdi (Little Deer)

  1. #11
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    Personally, I prefer not to have a "label"... I am still the same person I was before, only now I have this "thing"... (because I hate the words disease, illness, sickness... etc.) I am okay with just saying "I have Lupus" though, for some reason.... It's really odd... But to specifically CALL myself something... doesn't work for me personally... Maybe that will change, too... I don't know... But, I'd rather just be me... I didn't have a label before this, why should I now?
    "All sounds are potentially dangerous.
    All sounds are potentially medicinal.
    All sounds are beautiful." ~Yoko Ono

  2. #12
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    I've said elsewhere that I won't refer to lupus as a disease, so i don't refer to myself as sick. Lupus is a condition, in my lexicon. Being a "patient" implies illness to me.

    "I have lupus" I will say sometimes, but usually I just don't mention it. I'll say "I'm sun sensitive" when someone notices my hat and long sleeves on a hot day. Or my covering up in the car - cloth across my hands as I drive! I'll say "there and back in one day is more than I can do, I don't have the stamina I used to" if someone wants me to do too much in a day.

    Sometimes I'll call myself a lupie. But then, sometimes people (good friends thank heaven) will respond - "Yeah,you're LOOPY alright!" :P

    I'm just me, I guess!

  3. #13
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    Default I may have Lupus, but I'm not loopy!

    Hatlady gave the reason I won't use that word!

    I don't give myself a label in real-life; but on this board, one needs a short hand. That was my point.

    Out in the world, one often has to say one is sick. If I have to sit rather than stand in a long line at the movie theatre (if I'm well enough to go out), or can't walk any father than the Disabled Bathroom, I may have to say I'm sick, and have to say I'm not contagious (people's first fear, usually). If they ask what I have, chances are they've never heard of Lupus, but if I say "auto-immune" they think AIDS and sometimes freak out. Sometimes I have said "cancer" just to get them to give me a chair without a half-hour conversation with visual aids. I hate to do that, as it seems disrespectiful of those who do have it, but I cannot believe the questions I have gotten when simply requesting a chair!

    Anyway, on this board, I guess everyone's a "Lupie, " so I'll have to forget anything new.

    We could call ourselves wolves...that sounds more formidable than Lupie! And it's the root of the name of our condition, due to facial changes--darkening, spots, hair, really long teeth....
    Make life into art.

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