Long Term Survivors Community Group
For those of us who have been LIVING with HIV for 10 or more years and plan to LIVE many, many more.
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?
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?
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
BE WELL.
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.
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?
I believe I qualify as a long-term survivor. I was diagnosed HIV-positive, July 18, 1987. At a time when a positive diagnosis was still a death sentence. Here in Colorado, they would give the newly diagnosed a free room for three days to allow your mind time to adjust to your situation. Rather than just run out into the streets in front of a big bus. My first day was really bad for me since I had already decided to leave the negative lifestyle that I had been living, and I had just finished a three month rehabilitation program. Only to find out that I was already dead.
Lucky for me I had spent two tours in Vietnam, and Uncle Sam had promised that upon completion of my tour of service with an honorable discharge that they would take care of my health needs for life. They put me in a government study program, and I have been on every different kind of experimental HIV medication they ever came out with. So I have been on a roller coaster of hope and despair for many years. Yet they have managed to keep me alive for over 20 years. So I must be thankful for that. There have been several promising cures over the last 20 years, but none have been successful yet. But I still have hope that someday they will find a cure.
I would really love to get enough energy to return to work. We all need to keep hope alive. We all need to keep banding together since our plight is still a taboo subject in certain circles. Even though HIV has reached epidemic levels, still no one wants to talk about it. My hope is not so much for me as my time is nearly at an end anyway. My hope goes out to those newly positive young people that I have been meeting recently on daily strength. I am sad that I really have no great words of encouragement for them. All I can tell them is that there will be good days and bad days and they must endure each day as it comes.
I believe I qualify as a long-term survivor. I was diagnosed HIV-positive, July 18, 1987. At a time when a positive diagnosis was still a death sentence. Here in Colorado, they would give the newly diagnosed a free room for three days to allow your mind time to adjust to your situation. Rather than just run out into the streets in front of a big bus. My first day was really bad for me since I had already decided to leave the negative lifestyle that I had been living, and I had just finished a three month rehabilitation program. Only to find out that I was already dead.
Lucky for me I had spent two tours in Vietnam, and Uncle Sam had promised that upon completion of my tour of service with an honorable discharge that they would take care of my health needs for life. They put me in a government study program, and I have been on every different kind of experimental HIV medication they ever came out with. So I have been on a roller coaster of hope and despair for many years. Yet they have managed to keep me alive for over 20 years. So I must be thankful for that. There have been several promising cures over the last 20 years, but none have been successful yet. But I still have hope that someday they will find a cure.
I would really love to get enough energy to return to work. We all need to keep hope alive. We all need to keep banding together since our plight is still a taboo subject in certain circles. Even though HIV has reached epidemic levels, still no one wants to talk about it. My hope is not so much for me as my time is nearly at an end anyway. My hope goes out to those newly positive young people that I have been meeting recently on daily strength. I am sad that I really have no great words of encouragement for them. All I can tell them is that there will be good days and bad days and they must endure each day as it comes.