POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: revann33 on September 09, 2008, 08:18:26 am
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I posted the following over at the body and was slammed by negative remarks. So I would like to hear what you all think...
So let me qualify myself for those who don't know me. I am 40 yo, was infected in 1980 (through a rape).
Now, I am concerned that we have become our own worse enemies for education. I too am guilty. We are telling people that HIV/AIDS is not a death sentance. By doing so, we are telling people that HIV/AIDS is not to be feared. However, I think it is high time that we look at reality. The meds are helping some of us live longer and for some, healthier. However, the truth is that is all. There will come a time when the meds will fail and there is nothing more that can be done.
We need to focus on living our lives to the best of our abilities and enjoy our health while we have it. Besides, having life itself is a death sentence.
So instand of lying and saying AIDS is not a death sentence, we should guide people to learn how to live with the virus and enjoy life.
We need to show people we educate that there is life after testing pos and it is important to live it.
I was trying to get a topic going, so maybe I can do it here.
Ann
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Ann, I suppose we can say that HIV/AIDS is not an instant (for lack of better wording) death sentence like it was. Other than that, of course we should encourage people to live their lives to the fullest. I don't know why you would get slammed. Of course, this is just my opinion.
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I understand the thought of prevention and erasing any thought of this infection being a minor thing to people not yet infected, but I can honestly say that the folks that have encouraged me to continue on and hold that I might be able to live on (not as long as I would have I'm sure) is the main reason I'm still breathing.
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I think it's more of a "death sentence" issue (I don't care for that phrase anyway, never did) for those of us who have been on treatment during pre-HAART years and with longer infections, much less so now with better treatment and better drugs. I'm willing to accept that paradigm, more or less, for newly infected individuals.
I try not to project my own health issues, all which stem from the less effective HIV medications I took in the 90's during mono or dual therapy (or even the post-HAART bad formulation of saquinavir I was placed on before they made a better version) on to others that are benefitting from vastly improved medications and disease management.
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very well stated, Philly. I totally agree.
Perhaps in 20 years or so, we'll know if the current drugs are as 'easy' as touted. All I know is that this is not MY reality. Do I think it's a mistake to make people think that HIV treatment is a breeze? Certainly. But you have to admit, it is a much more hopeful message than the ones some of us received 20-25 years ago.
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I posted the following over at the body and was slammed by negative remarks. So I would like to hear what you all think...
So let me qualify myself for those who don't know me. I am 40 yo, was infected in 1980 (through a rape).
Now, I am concerned that we have become our own worse enemies for education. I too am guilty. We are telling people that HIV/AIDS is not a death sentance. By doing so, we are telling people that HIV/AIDS is not to be feared. However, I think it is high time that we look at reality. The meds are helping some of us live longer and for some, healthier. However, the truth is that is all. There will come a time when the meds will fail and there is nothing more that can be done.
THIS IS WHAT GOT YOU BAD REVIEWS IN THE BODY !
Whom are you to say the treatment will FAIL ?
ARE you a doctor ? You sound like the last one off the TITANIC !
I have had HIV for more than TWENTY years ! ,it progressed very slow , then BOOM !,in 2004.
BUT I have every faith that I will NOT die of HIV !
I do not ever down play what it is , and YES this PISSES people off big time .
I do not make it seem like a desease that is not to be taken lightly !
I tell anyone that will listen , that if you don';t got it, don't get it !
I find living here in BIBLE world that "THEY " don,t want to hear about HIV ,because there are no
queers in southern Missouri !
WE ALL SHOULD MAKE IT A POINT TO TELL PEOPLE THE HORRORS OF HIV .
Thank GOD some of us are doing very well , BUT TO HEAR A FELLOW HIV'ER
BE SO DOWN ON OUR LIFE LINE IS ODD AND VERY SAD INDEED !
yours truley , the Weasel
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I do believe there may be a misunderstanding. I totally believe that I and others have a greater chance to die of old age than die of AIDS. I am speaking about how we educate those who are not infected yet. I am not down on anyones time line, but at the same time, it is important to know that there are those of us that are still losing our lifes to young.
We must encourage people who are now infected to live.
Weasel, I never suggested that we have a limited timeline, and as a person who also lives in SW Missouri, believe me I know! What is worse is that I am a person who works in the medical field, and I hear the ignorance there also.
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I agree with you Ann--we should live life to the fullest. Living only the last 14 yrs. HIV+ out of my 40 or so yrs here on Earth has certainly changed my perspectives on many issues. But, not on living life to the fullest. I did my best to to this pre HIV and am now doing my very best to continue this approach to living. HIV is now a daily fact of my life...........I live with it.
I do recall the moment (not year, month, nor day), but rather the moment it dawned on me that HIV COULD do me in, not that it WOULD do me in. It was this shift in my own mindset, I believe, that has given me the many years on Earth which I did not expect to have after diagnosis. Having tried all the available meds over the years (mostly at the Trial stages) I now have a regimen that is helping keeping me able to progress to old, ........ I mean.......... an 'older' age. How old that age will reach before life ends I know not. How will this life end I know not. But, I do know that I live each day hoping to fulfill goals and not let any opportunity to do good pass. My time here on Earth is only a piece of the big recipe (whatever that is) but I know I've been given more time to help, educate, learn from and otherwise enjoy those around me. Yes, the moment I realized that HIV COULD be my 'death sentence' not so much that it WOULD be my death sentence is when I put HIV in the back seat and and took in a new travel mate-------------a positive attitude based in reality.
As for the meds...................well I can only relate my own experiences and they're not all pretty. I do know that I would not be typing this now if they were not available to me. One goal I did reach was thanking Dr. David Ho personally for his discovery of Protease Inhibitors.......they have given me life. I've more goals to cross off the list, but in my pursuits, I am always hoping to extract the fullest life experience each day has to offer.
Sorry folks, I'm new to this whole forum thing and notice I'm tending to ramble. Ann, thanks for generating discussion..........I believe it is always a good thing.
Robbee
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hullo ANN , my fellow Missourian :) ,
so you do have first hand knowledge of the CRAP that is dished out in Missouri
and I am sure most of the world .
I do hope you tell it as it is ! , I know often health workers can not interject thier personal
feelings , and only follow protocall of thier boss or thier work place !
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i have found nurses in Poplar Bluff ,not all but SOME , put thier own personal hatred
into the way they treat patients !
It is like out of the twilight Zone !
They do NOT care how we got HIV .They only preach NO SEX for homosexuals !
even if the patient did not get it from sex.
It is a forbiden topic ! I know of no classes about HIV .
when I ask my several nieces and nephews about thier knowledge a funny thing happens .
They admit that they drink and after that , who cares ,safe so far ...........................................
i wish for the stop of HIV and all STD's but as that won't happen , all I can do as
a common person ,is to tell stories to those that will listen .
best to you !
Karl
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Welcome "revann33"!
After the advent of HAART, physicians and scientists told that HIV infection had become a "chronic, manageable illness". Entitled by that, many of us began repeating the story as an (auto?)hypnotic mantra, possibly ignoring the increasing evidences that HIV disease is not that chronic - meaning "frozen" by the drugs - nor manageable (even disregarding meds failures due to resistance).
So, in case "we have become our own worse enemies for education", primary fault is not ours!
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There is nothing in the standard definition of the word "chronic" that means "freeze"
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There is nothing in the standard definition of the word "chronic" that means "freeze"
How do you think that "cronic" was generally interpreted?
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I take no issue with the use of the word "chronic" -- as it indicates something persists, is not eradicated, and is still difficult to treat. (with the caveat that I stated above for pre-HAART long term survivors)
As I've stated before on this board, I find the constant use of mountain climbers in pharmaceutical advertising misleading. "Chronic" and/or "manageable," no if explained properly by the doctor.
(emphasis on that "if")
How do you think that "cronic" was generally interpreted?
chronic |ˈkränik|
adjective
(of an illness) persisting for a long time or constantly recurring : chronic bronchitis. Often contrasted with acute .
• (of a person) having such an illness : a chronic asthmatic.
• (of a problem) long-lasting and difficult to eradicate : the school suffers from chronic overcrowding.
• (of a person) having a particular bad habit : a chronic liar.
[Oxford American Dictionary]
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This topic should have been posted in Living With. The Long-Term Survivors forum continues to lose meaning or purpose.
This forum is a safe place where those who have been living with HIV for anywhere from several years to decades can come to discuss the issues they confront. Among other things this is where they can talk about their experiences as well as the special challenges they have to deal with physically, emotionally and otherwise that come with having lived with HIV for a lengthy period of time. It is also a space intended for those who maybe more recently infected but are older in years, and therefore have to deal with special issues related to living with HIV at an older age.
At the same time we hope that those who are newer to living with HIV will be able to benefit from the knowledge and experience that will be shared here. We are not excluding anyone from participating here, but we do ask that you be mindful of the special needs for which this particular Forum has been established.
Thank you for your cooperation.
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hey dachshund ,
this topic it a DAILY topic for me .
IT should be a daily topic for all HIV/AIDS persons !
why would you want to switch it to a defferent place ?
so nobody would see it ?
a little leeway <sp> is a good thing !
teaching HIV is bad has to be taught , so maybe you could add input
and not just a comment on one person placing an IDEA in the wrong forum .
I have lived with HIV more than half my life !
I did not find it out of topic of long term survivor forum !
a person newly infected is NOT a long term survivor , even if Gand-ma Mosses gets HIV
she will have to live with it for several years to be a long timer !
maybe I've had HIV for too long
to listen to a long speach about nothing .
love to all , the weasel
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Hey Revann,
The way I see it, there are two parts to the issue you raise.
First, is HIV a chronic, manageable disease? Well, it is chronic, that's for sure.
Manageable? I'm still not sold.
OK, yes, in the short-term, the new HIV meds are mostly less problematic, cause fewer known long-term side effects and are easier to take.
But, they are just that - new.
We know AZT may cause certain side effects because it has been around for 21 years.
By comparison, many others have been out less than a decade. So, in that sense, we really are still in the wait-and-see mode.
Another aspect is we have always focused on the side effects of the meds, but what of the side effects of HIV?
I'm not talking OIs. Many long-termers can give us personal examples of how nasty opportunistic infections can be.
I am talking about uncharted territory - HIV and aging.
Sure, we can bring the level of HIV in the blood to undetectable levels, but other reservoirs still exist which may or may not be affected by HIV meds.
What about long-term exposure in the gut, the lymphatic system or the central nervous system?
Sure, the meds may be keeping the virus from exploding exponentially in these areas, but what will be the effect on us as we age?
While the virus' overall affect may be diminished, it is still chipping away at various parts of our bodies ever so diligently.
Is HIV causing unseen, as yet undiscovered damage to our bodies, just as lichen can eventually turn a boulder to gravel?
The answer is we don't know. But I have a feeling we are going to find out because, thanks to the advent of the triple drug cocktail in the mid 90s, we are not dying in droves and in short order. Many of us may actually live to be called "senior citizens."
(I can see us now, trading in our disco shoes for support stockings. ;))
So, does that make HIV a manageable disease? In this instance, I think the jury is still out.
Now, the second part of the issue at hand is living life to its fullest. I think you have hit the nail on the head.
We should do this anyway, but I think what you are saying is too many people are taking good health and a long life for granted when they shouldn't.
I agree completely. I have no idea what surprises HIV has in store for me in the coming years, should I continue to be on this side of the sod, that is.
I also don't know what long-term issues may arise, as I mentioned above.
That is why I think it is important to grab life each day and make it the best day possible.
I know Pollyanna has nothing on me.
But I don't apologize. I may drop dead tomorrow.
HUGS,
Mark
(Edited because my math sucks.)
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This topic should have been posted in Living With. The Long-Term Survivors forum continues to lose meaning or purpose.
This forum is a safe place where those who have been living with HIV for anywhere from several years to decades can come to discuss the issues they confront.
Given your own statement, this is exactly where I should have posted. As a long termer, this is an issue that I am comfronted with, and I am sure that if it was in the "wrong" board, then it would have been moved.
Thank you all for your replies. This was what I was trying to do, start a discusion.
Mark, I wish I could have said it the way you did! You seem to be on the same brainwave that I am on. I just can't put it into words the way you have.
Karl, I worked at OMC and OMG how 1980's they were! I forced the hospital to let me do a personal talk to the staff to educate them. I got through to alot of them, but it is still redneck - bible thumping territory. At least when I left there they treated people better and with less ignorance.
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Doxie,
Ann told us in the second sentence of her opening post that she's was infected in 1980 and according to her very first post in these forums, she tested positive in 1987. If that doesn't qualify her to post in the LTS forum, I don't know what does. I don't understand why you're quoting the LTS Welcome thread at her. She can post here all she likes.
Revann, welcome to the forums.
Ann
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Doxie,
Ann told us in the second sentence of her opening post that she's was infected in 1980 and according to her very first post in these forums, she tested positive in 1987. If that doesn't qualify her to post in the LTS forum, I don't know what does. I don't understand why you're quoting the LTS Welcome thread at her. She can post here all she likes.
Revann, welcome to the forums.
Ann
I wasn't talking about her. Sorry I'm not allowed to post my concerns, I'll censure myself in the future.
Dachshund
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Dachshund,
Please explain then. I would like to hear why you quoted the LTS Welcome to me. Although you said you weren't talking about me. I don't think anyone is asking for censure, but maybe an explaination will help us understand your position.
Thanks,
Ann
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Dachshund,
Please explain then. I would like to hear why you quoted the LTS Welcome to me. Although you said you weren't talking about me. I don't think anyone is asking for censure, but maybe an explaination will help us understand your position.
Thanks,
Ann
Ann, I think he may have been referring to "leit" and a couple other people in this thread, not you.
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Ann, I think he may have been referring to "leit" and a couple other people in this thread, not you.
If you're right, and you probably are, then I stand corrected and apologise for my mistake. However, it would have been helpful if Doxie made his target clearer. It certainly did look as though he was speaking directly to the original poster.
Mea culpa and all that.
Ann
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Philly,
Thank you. Although I would still like to hear from Doxie.
Ann