Discussion Topic
Where is all the L T survivors
Posted on 06/24/08, 02:31 pm
The bond of overcoming the greatest odds. The bond of overcoming a terminal diag. I want to learn from you & get to know you better. I rarely see a new post or reply. How is everyone?
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Reply #1 07/09/08 4:55pm
I feel the same way Mark although I am not yet a long term survivor so I do feel a bit out of place. I came here and joined this group so that I might gain some insight of having this virus from others that have it and lived with it for so many years...I do hope that eventually some will respond and be open to sharing their lives/experiences for others such as myself..I have tried by posting here awhile back but the only response I got was from you..haha...I hope that this group will eventually expand and become a safe and educational place to come to each day....~Doll~ -
Reply #2 07/15/08 4:15am
I'm having the same issue with the group I started, but at least this group has a purpose. I started mine just to see if I could get enough members to qualify for the DS donation to your chosen charity a while back!
My latest HIV-related issue was learning that protease inhibitors and Vicodin don't mix. It looks like there's a lot of interaction precautions necessary with these drugs in particular. I've been on them for years and only just now realized this (at least to this extreme).
I had a tooth pulled today - an abscess that came about because of gum disease which might not have progressed without HIV and might have been treatable if I wasn't POS, so I guess that's kinda HIV stuff. Certainly the precautions about healing I need to take now are a little more extensive. Tomorrow I'm going to the dermatologist because of some spots that don't look right to my GP. I have a psychiatrist appointment on Thursday. But three different doctors in one week isn't so weird to any of US, is it? -
Reply #3 07/15/08 10:43am
Defin....not. Sometimes I have three doctors each week for weeks on end for different issues..It is a real pain in the ass but I guess it is necessary in order to take care of ourselves the best we know how..Hope you are feeling better soon! -
Reply #4 07/19/08 10:31pm
Yep, I might be able to help, but not sure. I was Diagnosed in 1994. I know that I was infected in 1988. My memory is kinda shot, but somewhere around those dates. I have never been sick, tried alot of pills, quit pills, and just keep going and going. I have a t-cell count of less than 200 for over 4 years, I think. Oh, and my memory is not that bad, getting better after I quit drinking thanks to AA. Seems that HIV was a major factor in my drinking problem. You know, Mental issues. "Why Bother"!!!! Well I have the energy of a teen, but the small pains from age get to me once in a while. So now, I just reliy on God, and my Doctor to check me out once in a while. I have advise. -
Reply #5 08/01/08 9:18pm
I was negative in 87 and positive in 88 and then also found I was hep c positive . So I am celebrating 20 years of being hiv poz and also one year of not smoking thanks to chantix and DS. My latest numbers which have me pissed off are 241 23% and ud vl. So here I am another long tern survivor checking in with the group. Feel free to write or become my friend. -
Reply #6 08/10/08 8:14pm
I'm new to this board and to this group but thought I would say something.
I was diagnosed back in Nov 89. I had always been safe and was tested every six months and was always negative. I know for sure who infected me and this same person infected close to a dozen other people.
I have had a lot of ups and downs over the years. I remember when I used to be gun-ho about the whole AIDS thing. I volunteered at the AIDS Foundation, spoke to College kids about safe sex. Put togethe safe sex kits and handed them out at bars.
AIDS was in your face, all the time. I don't think it is anymore. At least not like it was in the past. People aren't educated like they used to be and now more than ever, more people are getting infected every day and it's so sad to see it happen.
I have to admit, I kind of got burned out on the whole AIDS thing. Buring more friends than I can remember and one spouse. I was dealing with my own issues and that was enough for me to handle at the time.
I've been away from the whole AIDS thing for some time now. I felt like I needed to come back because there are a lot of scared people out there that have no place to go like I did when I tested positive and I might be able to help in some small way.
I won't pretend I know all there is to know about HIV/AIDS, because I don't. I can only tell you what I know and the things I have been through in my life.
If I can help anyone, feel free to talk to me or ask me any questions.
Take care,
Brian -
Reply #7 08/11/08 10:11am
I'm good and glad we are here for each other. I can't speak for anyone else but it is my Intention to BE cured of this HIV one day soon...then what will I have to whine about?
BE WELL. -
Reply #8 08/11/08 9:10pm
Hey you hows it going? Everybody today is my birthday I am 54 y/o and hiv poz 20 yrs hcv poz more that and I am ready for a bunch more years to come! I finally got my page done on www.hivchat.ning.com its based on the hell panel of heironomous Bosch garden of eathly delights
and i am still having a roller coaster in the chat room www.hivchat.org I can't lie, someone did it for me lol. -
Reply #9 08/13/08 3:01pm
25 years, 26 in september. I'm 44.
NO meds in nearly four years.
I never took that AZT stuff.
Did the protease til i learned they lied thru their teeth about the side effects, until my left hip rotted literally to death (bone death, avascular necrosis, yeah, they didnt tell YOU about it either? lol)
So, having learned what protease and viral load is all about, and the limitations of those 'machines'... i guess i've found myself marginalised by yet ANOTHER substrata of US vs. THEM in the new america where mob rule determines truth from fiction, even in the face of overwhelming evidences, (or at least reasonable inquiry)
I've never actually had an hiv related health disaster. Ive had a number of Iatrogenic Disasters. (all of which have been admitted to by the doctors who 'performed them', although never would they admit so directly, and only AFTER THE FACT, with a snide chuckle to the effect that nobody will care... if you get messed up by iatrogenics and you have aids, the prevailing attitude is that you should be lucky you're alive, and keep your mouth shut. (even from a lifelong wheelchair because nobody told you the zerit could cause gross point-blank traumatic crippling neuropathy, ie. CANT WALK) [i escaped that one when i found the guts and courage to study and learn and find my OWN way out of that downward spiral... and of course they all told me im nuts...
im still here, im still healthy, fake hip in tow, i enjoy what i call a happy well adjusted life, even tho i dont know a living soul who will even entertain the idea that a false positive test result might, just might be a reality for some folks. (sure plenty of people will speak online, but not to my experience, in the social settings where once they voice their opinions, then they too get marginalised out of what is already one of the tightest clicks in town, any town, the hiv set!)
family friends, healthcare workers, support groups, hiv activist groups, (whose claim to fame was originally often a skepticism of doctors and the establishment, which they now, with hefty funding in their pockets, vehemently trust with their very lives.) a whole new spin on self fulfilling prophecy.
the greatest joy of my life? living to see the end of this mystery.
so dont let my seemingly jaded attitude label me improperly. im not all that bitter nor pessimistic. hell, how can someone survive aids, and be pessimistic about anything?
viva moi!
lol
-Taoe, and yeah, where ARE all the long term survivors? Hiding? in fairness, i suppose if one is surviving well enough, what need have they for a forum like this? like realtime support groups, we find that people come when they are in crisis, but then fade out when things are well. and there is the issue with 'aids fatigue' even among its patient-class.
are there things we can do here to attract more members? open the shutters attract a few newbies?
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Reply #10 08/26/08 8:28pm
my name's Tom. poz for 24 years. I came to Columbus, Ga in '96 after my partner passed. from chico, ca. Ive lived in Key West , S.F. and up and down the california coast. Came to ga cuz my health care providers bought my airline ticket to send me to be near family cuz they felt that i did'nt have moret than a year or so left. s o here i am. I dont like it here but i stay cuz of family. For most of the last ten years i isolated drinking beer and smoking cigarettes. OKAY not too smart i know. If i could tell anyone anything it would be --keep working , its way to hard to get back into if youve been idle too long . I get panic attacks at interviews. Keep a healthy social. Im finding it difficult to reconnect. But im working on it. I found a gay peoples church, there is a new support group (tho very small) and am starting a gay people A.A. hoping that will help keep me sober and want to get a life. I m using Vocational rehab hoping to get back to work but its going verrry slowly. Its frustrating. I want to train dogs for service work. Im having problems with my meds. well, enough about me for now. Im feeling :( . i know its temporary. How are you all doing?
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