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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
01-28-2004, 05:42 PM
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.
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.
01-29-2004, 09:39 AM
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 :) .
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
01-30-2004, 01:00 PM
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.
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
02-07-2004, 09:38 AM
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.
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
02-07-2004, 10:14 PM
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. :?
thank you for responding, but I didn't realise you were a business and looking for lupus sufferers who were willing to pay you to work
02-08-2004, 11:08 AM
I'm not looking for Lupus sufferers to pay me to work! If I was looking for workers; do you really think I would come to a lupus website?!! I don't work, I don't claim disability, and I don't need your comments. It seems to me that you have your own issues, so don't start any with me.
03-07-2004, 08:36 AM
Michelle and Batgirl;
I want to thank you both for trying to be helpful with young Cici. I stayed out of the conversations because you two were doing so well. She seems to be young, very, very afraid and angry.
I recognize all of those signs...my daughter had many of them before she succumbed to Lupus at the age of 24.
Do you know when a Lion is most dangerous? When it is injured and in pain!! Pain makes us act our in anger and lash out in frustration. She is concerned about the loss of her health and the loss of her future, as are we all!!
That is a formidable amount of stress and unhappiness that we all take on. I hope that she finds some peace of mind!
Again.....thank you both for your efforts and for your support of this forum.
Peace and Blessings To You Both!