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  1. #1
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    Default this site

    what's up with the world of lupus support? everytime i have found a supposed site it is pretty much dormant and/or unarresting and this one appears no different. does our disease somehow render us unable or unwilling to communicate our feelings, fears and wishes? ok i'm done now. i've fought for three years to find medical acceptance, i don't need to fight to communicate on the stupid computer. i hate it anyway. cici

  2. #2
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    Default why not contribute?

    why don't you let us know what works, doesn't work for you in your struggle with lupus? energize us yourself? it's up to all of us to contribute what's out there, instead of waiting for someone else to do it for us.
    wishing health and strength to all

  3. #3
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    Default that's what i'm trying to do

    i can't give you answers like you can't give me answers. all i ask is some input. what works for me is nothing so far, how about you? are you tired of being sick? are you scared because you've lost your life? your profession? your passion? i am all of the above. so for you, are you happy with this web site? has it answered all your needs? get a grip, get a life, get a job.

  4. #4
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    ok- i'll take your bait. yes, I've gotten great responses and support from this site. and i have a job, a life, and i'm trying to loosen my iron fist grip a little. having a good cry, taking a bath, stretching gently and meditation all helps me do just that. by the way, i do appreciate your spunk .
    wishing health and strength to all

  5. #5
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    Default spunk?

    thanks for responding. i don't feel too spunky right now. i actually feel like the lupus kid from hell. my immune system apparently can't be stopped. i am presently on so much medication that it is hard to distinguish the illness from the side effects. have you or anyone else gone through this? if so, how do you keep on going? i'm pretty much over it. if i stop all meds, i might die, yet if i keep on with all the meds, will i die anyway? thanks for letting me vent. cici

  6. #6
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    cici- i am so sorry you are having to deal with this. i don't know what else to say. do you have something to kick? that helps me.
    wishing health and strength to all

  7. #7
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    Default

    nothing to kick except my cats, which seems a little harsh. i'm better today because i always come back to the alternatives, which suck. i also try to concentrate on those who are worse off than me, of which there are many. i can still try to go to the gym and enjoy cooking for my friends and neighbors. thanks for listening . cici

  8. #8
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    Default Hi cici

    Hi!!
    I'm new here. What's wrong with the site? Why are you angry? I certainly would like to get to know people who understand what I'm feeling, and maybe I can help someone and they could help me as well. I don't have anyone to talk to about the issue but I pray about it. I haven't been in pain in a long time and I'm thankful. I have learned that household products can be causing people to have chronic diseases; this is only one of the diseases caused from it. I guess I talk to much, I gotta go. Have a nice day.
    I am 23 years old and was diagnosed with Lupus when I was seven months pregnant. I think that everyone should be more aware of potential causes of this illness.

  9. #9
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    Hello. I've been sick for three years now, and I'm starting to feel a little overcome by the intensity of the illness. I'm on more medication to suppress the immune system than most kidney and heart transplant patients, yet my immune system just says "ha ha" and continues to attack me. Someone else out there going through this? Any advice? Comfort? Support? cici

  10. #10
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    Default

    Well Cici,
    I'm very sorry to hear that. I will get as much inforamtion as I can to try to help you and then I'll get back to you. I really don't know what to say. Keep your head up; stay strong. :?
    I am 23 years old and was diagnosed with Lupus when I was seven months pregnant. I think that everyone should be more aware of potential causes of this illness.

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