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Author Topic: In your opinion, what is a long term survivor?  (Read 46196 times)

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Offline MarcoPoz

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Re: In your opinion, what is a long term survivor?
« Reply #100 on: January 14, 2009, 01:43:47 PM »
Thanks all for the teachable moment.  My head hurts ;-)

Here's what I've learned from this thread:

-This forum is chock-full of caring, compassionate and smart people--and a few 'not-so-much'.
-(for me) Try harder to be more clear in posts
-(for me) Don't take the bait just cuz I feel crappy that day.
-Those of us who remember GRID, blue and white handfuls of AZT, the 'cure' in 1996, biohazard signs posted on a room where we were kept and the senseless ending of so many precious lives, have so much to give to one another.

In the whirlwind of what I read here--there were definately pearls of caring and support.

-Marco

Offline Andy Velez

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Re: In your opinion, what is a long term survivor?
« Reply #101 on: January 14, 2009, 01:52:03 PM »
Moffie, when you PM'd me about this issue back in November,  the first thing I asked you was for some specific example(s) of inappropriate comments on the part of any who might not be considered a LT survivor. Personally when addressing any problem I always find it helpful to get specifics rather than batting around at and about generalities. You never responded to my request.

So other than passing along your comments to the other moderators as I promised I would, I decided to let the matter rest there for the timebeing, while keeping watch as often as possible on the ongoing postings.

Defining what a LTS seems inevitably to stir up strong feelings. I appreciate that. And at the same time I continue to believe we can have a vital LTS forum without becoming rigidly exclusionary.  
« Last Edit: January 14, 2009, 01:54:23 PM by Andy Velez »
Andy Velez

Offline Dachshund

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Re: In your opinion, what is a long term survivor?
« Reply #102 on: January 14, 2009, 03:03:50 PM »


In fact, I can't remember the last time we've received a mod report about inappropriate newbie replies in this forum (as opposed to new threads).  I did notice one myself last week, and issued a prompt warning (http://forums.poz.com/index.php?topic=25133.msg315599#msg315599).



I can. I sent a report to mod and a PM to Ann about the thread prior to your response to meech. I felt your response was appropriate and I appreciated the way it was handled.

Personal agendas aside, I think the discussion regarding LTS has been beneficial to all.

Offline Moffie65

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Re: In your opinion, what is a long term survivor?
« Reply #103 on: January 14, 2009, 07:04:46 PM »
My head hurts, my feet stink, and I don't particularly love Jesus.

Now that I have a new asshole, which frankly under the circumstances was probably necessary, due to it being worn out after 62 years; I want to make something perfectly clear.

This thread was never created for revenge!  Period.  Nuf said about that.

This thread was created for curiosity, and to find out what some of the other LTS members of this forum and site felt about a forum that was created for LTS and then asks all to participate.  That was the whole truth and nothing but the truth. 

However, as the thread grew on, and the feelings began to mature, yes, I did become a bit upset at the lack of response from the LTS mods.  Today, while I was in a Consortium meeting, the response came.

What can I learn from this experience?  I learned I am not welcome with my confrontive nature; something I learned from people like Peter Staley and other Act Up cohorts.  I am no longer capable of posting on this site without giving the mods a headache of monstrous proportions.  I am truly sorry for making you of the organization so upset that you had to spend so much of your time squashing everything I said personally.  I am grateful for your personal research and for documenting everything I fucked up, so that now I clearly understand. 

Thank you all for participating in this thread, and if you want to know about the incredible shoes that I have discovered, please e-mail me.  If you don't have my e-mail, sorry.

Good bye.
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline Peter Staley

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Re: In your opinion, what is a long term survivor?
« Reply #104 on: January 14, 2009, 07:33:45 PM »
I am no longer capable of posting on this site without giving the mods a headache of monstrous proportions. 

Not true at all.  I try to read through almost all the posts in these forums (except the Women's Forum and Am I Infected) once every couple of days, so I generally read every post you write.  Almost all of them are intelligent and caring (especially the help you offer newbies!).

But I think you have a chip on your shoulder about me and the other mods, and it reveals itself on thankfully very rare occasions.  This time, I responded.  What did you expect?  Even your goodbye post above seems to acknowledge that you know you attacked the mods.

So no -- I don't get a headache reading your posts here.  I actually slow down and read almost all of them -- they're that good.  But I'm human, and I will respond when unjustly attacked.

Offline crag

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Re: In your opinion, what is a long term survivor?
« Reply #105 on: February 24, 2009, 12:49:41 AM »
I'm new on these forums. But I'll post what I think is a long term survivor; someone who survived AIDS. HIV is  "managed" now. Not so 10 years ago.

But you know, not many of us who actually had AIDS, and I mean who were at the brink, are left. We all had good timing or were suborned bastards and hung on (I had good timing). Only to die of side effects or just give up a few years later.

I knew a guy, a friend, this doctor who lived in Miami Beach. Had been poz forever and had survived AIDS. But after years of drugs and side effects he had had it. He stopped all treatment. And died soon after. Personally, I suspect he was facing something like cancer and didn't want to go through the cycle again. And I don't blame him.

BUT (a big but) this is what I think a long term survivor is. Not who should post in these forums. Personally i dig everyone posting. Just to make this clear, before I get flamed. :)
« Last Edit: February 24, 2009, 01:00:36 AM by crag »

Offline AlanBama

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Re: In your opinion, what is a long term survivor?
« Reply #106 on: February 24, 2009, 03:10:16 PM »
Hi crag, and welcome.

Deep down, I truly believe that a long term survivor is someone who lived through the 80's and early 90's, when we had no drugs at first, and then only AZT....I got on the roller coaster in 1987 and have been riding ever since.  We have tried to put an actual "number" with it -- say 10 years of living with HIV -- but someone who was diagnosed in 1999 is now a 10 year survivor.   Are they a LTS?   It's not for me to say, but I know what I feel in my heart.

I understand what you are saying about your friend who just stopped all treatments and then died.  He probably was just exhausted, and didn't feel like he could take on another "major battle".   I'm not sure I would be willing to.  It would depend on the nature of the illness.   There are quite a few AIDS survivors who have beaten cancer as well, so that would be a bridge I would cross when and if I ever come to it.

hugs,
Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline crag

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Re: In your opinion, what is a long term survivor?
« Reply #107 on: February 25, 2009, 02:23:29 AM »
You know during my time of being on the brink, the thought of killing myself floated around. I would've been easy considering all the drugs I had (and still have) around the house. Or could've just stopped the drugs and died on the toliet. ;)

But I hung on. I was so brave back then. Actually I was scared shitless. I often tell people it was fear that kept me alive. Maybe I was brave too, just a little.  It wasn't that I was concerned about any judgments, iI was just pissed that no one would know of my passing. Most of my "dear dear" [ex] friends  were circuit bunnies. Who forgot my name when i got ugly and railroad thin.

Living gave me the opportunity to change things. To stop my mindless pursuit of ridiculous  wealth  and spread what I had around. And surround myself with people who give a shit about each other, and the greater world.

-Stephen

PS: And Peter, we knew/met each other. Though it's been years. Glad to see you still kicking.
« Last Edit: February 25, 2009, 03:17:40 AM by crag »

Offline Peter Staley

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Re: In your opinion, what is a long term survivor?
« Reply #108 on: February 25, 2009, 10:25:01 AM »
PS: And Peter, we knew/met each other. Though it's been years. Glad to see you still kicking.

Glad to meet you again!  My memory needs some jogging though -- send me a Private Message (click the IM bubble below my picture) with more details.

Offline Miss Philicia

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Re: In your opinion, what is a long term survivor?
« Reply #109 on: November 20, 2009, 01:06:18 PM »
When the forum was first up and running I thought and believed it was for all those all had survived the horrors of the 80's and early 90's..to me that is a LTS..
ditto
"Iíve slept with enough men to know that Iím not gay"

Online BT65

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Re: In your opinion, what is a long term survivor?
« Reply #110 on: November 21, 2009, 07:31:15 AM »
I totally agree that a LTS'er is someone who's survived the 80's, early 90's being diagnosed.  I, myself, don't think that someone who's in their 50's, who's been diagnosed within the last 5-10 or so years is one.  Of course, this is my opinion.  I just don't think that someone who never had to live with the early-day horrors that so many of us have, is necessarily "qualified" to understand what we personally went through/continue to go through as results of nasty OI's that left us wondering if we were going to live another couple days, and the early horrific meds we had to take.  I realize some newer diagnosed people lost a lot of friends.  But, we who actually were diagnosed with HIV/Aids, sat there, (at least I did), besides the friends I lost, wondering if someone was going to sit with me when the time came (which I believed was inevitable). 

If anyone was allowed to participate, then why have a LTS'ers forum.  In our women's forum, men aren't allowed to post.  I think we LTS'ers deserve the same respect.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Dachshund

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Re: In your opinion, what is a long term survivor?
« Reply #111 on: November 21, 2009, 08:22:52 AM »
My definition of a LTS has and always will be someone who tested and was diagnosed prior to the advent of HAART. The emotional and physical equivalent just does not exist after that. Maybe similar, but not the same. Others can empathize, but only a LTS can understand. I wish some would try a little random act of kindness instead of stirring the pot when it comes to posting in LTS.

Offline Miss Philicia

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Re: In your opinion, what is a long term survivor?
« Reply #112 on: November 21, 2009, 09:23:52 AM »
I wish some would try a little random act of kindness instead of stirring the pot when it comes to posting in LTS.

I've never understood why there's once restriction for Positive Women and yet another wholly different one for Long Term Survivor.  It's my hope that one of our fair moderators could explain this to the rest of us.
"Iíve slept with enough men to know that Iím not gay"

Offline Moffie65

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Re: In your opinion, what is a long term survivor?
« Reply #113 on: November 21, 2009, 11:04:27 AM »
Ms. Philicia,  I suggest you ask Mr Velez, as he has been stalwartly against closing the LTS forum to anyone, even though he is still not HIV+ and couldn't, even on his best day, understand the LTS experience, except as an onlooker.

Quote
Defining what a LTS seems inevitably to stir up strong feelings. I appreciate that. And at the same time I continue to believe we can have a vital LTS forum without becoming rigidly exclusionary.
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline Snowangel

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Re: In your opinion, what is a long term survivor?
« Reply #114 on: November 21, 2009, 07:42:36 PM »
Andy Velez is not positive?  I always thought he was, to me his posts have always been very informative and supportive.

To tell you the truth, I can never remember if I am supposed to post her or not? I got infected in 94, tested and started meds in 97, aids diagnosis in 00(or so) but for the most part was going it alone till I found you guys a couple of years ago.

  As far as having a seperate womens forum, I thought it was because we tend to have a different set of problems, body wise, that men don't have to go through and usually cringe to hear about, not to mention, usually but not always ,and not all of us, are more sensitive to certain things.
Of all the things you wear, your expression is the most important

The heaviest thing you can carry is a grudge..

One thing you can give and still keep...is your word.

One thing you can't recycle is wasted time.

Offline anniebc

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Re: In your opinion, what is a long term survivor?
« Reply #115 on: November 21, 2009, 08:55:20 PM »
I wish we could put an end to this, I really do...for what it's worth this is what a LTS is to me:

Those who remember HIV being referd to the "GRID"
(gay-related immune deficiency), stigmatizing the gay community as carriers of this deadly disease.

The  Canadian flight attendant, nicknamed "patient zero" ...and After 6 years of watching people die, those who remember the "new treatment" Retrovir (AZT, Zidovudine).

hugs
Jan :-*
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline aztecan

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Re: In your opinion, what is a long term survivor?
« Reply #116 on: November 22, 2009, 12:15:54 PM »
I wish we could put an end to this, I really do...for what it's worth this is what a LTS is to me:

Those who remember HIV being referd to the "GRID"
(gay-related immune deficiency), stigmatizing the gay community as carriers of this deadly disease.

The  Canadian flight attendant, nicknamed "patient zero" ...and After 6 years of watching people die, those who remember the "new treatment" Retrovir (AZT, Zidovudine).

hugs
Jan :-*

Sounds good to me.

By the way, the name of the flight attendant was Andre' Dugat, although I probably mispelled his name.

From what I heard, he was quite a looker.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Dennis

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Re: In your opinion, what is a long term survivor?
« Reply #117 on: November 22, 2009, 01:34:34 PM »
I wonder if those with other manageable, degenerative diseases, such as breast cancer, quibble about such things.

For what it's worth, I was diagnosed almost 20 years ago. I remember being prescribed AZT and being told if i didn't take it I would be dead in 10 years. I refused to take it. In fact, I didn't start treatment until December of 2002, 14 years after being diagnosed.

I've never been to a funeral of someone who has died of AIDS. Hell...I don't even know of anyone personally who has died of AIDS.

And despite all this, or conflicting definitions from other members, I still consider myself a LTS and will do so until the day I die.

Offline Dachshund

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Re: In your opinion, what is a long term survivor?
« Reply #118 on: November 22, 2009, 01:49:53 PM »
I wonder if those with other manageable, degenerative diseases, such as breast cancer, quibble about such things.

For what it's worth, I was diagnosed almost 20 years ago. I remember being prescribed AZT and being told if i didn't take it I would be dead in 10 years. I refused to take it. In fact, I didn't start treatment until December of 2002, 14 years after being diagnosed.

I've never been to a funeral of someone who has died of AIDS. Hell...I don't even know of anyone personally who has died of AIDS.

And despite all this, or conflicting definitions from other members, I still consider myself a LTS and will do so until the day I die.

And yet you decide to quibble about it with your own conflicting definition.

Offline Joe K

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Re: In your opinion, what is a long term survivor?
« Reply #119 on: November 22, 2009, 02:44:26 PM »
I wonder if those with other manageable, degenerative diseases, such as breast cancer, quibble about such things.
Dennis,

Your insensitivity to the plight of LTS is beyond my comprehension, especially since you are a LTS yourself.  Quibble?  Fucking Quibble? Which quibble would that be? The quibble about how my body is failing, as is my mind and how unstable I have become. Or maybe the quibble about how I average 2 months each years, where I don't generally feel like a piece of shit. How about the quibble about my not having any savings and wondering how I will survive on a fixed income. I also quibble about the horrors I have been seeing for the past two years. The nightmares where the faces of my deceased friends flash through my mind, reaffirming my inability to help any of them and reinforcing the guilt I feel for surviving. Or how I get waking flash backs of horrific times and I have no way of stopping them.

This thread has evolved to include the question, of what we need to do, to make this forum safer for us LTSers. I'm sorry if you find my quibbling to be insignificant. All I ask is that you respect the history I do have and to never minimize that history. Quibble indeed. How insulting.

edited to add: I also find the description of HIV as a degenerative disease to be laughable. It's a virus that sole mission is to kill it host. It is not a chronic manageable disease for many of us here and to suggest otherwise, is again insulting to this forums members.
« Last Edit: November 22, 2009, 02:47:10 PM by killfoile »

Online leatherman

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Re: In your opinion, what is a long term survivor?
« Reply #120 on: November 22, 2009, 02:52:11 PM »
I wonder if those with other manageable, degenerative diseases, such as breast cancer, quibble about such things.
I would disagree with your definition of calling this a manageable disease. Perhaps it is NOW for someone diagnosed 2000 and later; but many diagnosed before that time are still going to great lengths to fight back death. How about we call if a "barely manageable disease" to at least give a little reality to the great lengths many go to to stay alive a little bit longer.

I just don't understand why people can't see that the people infected that went onto treatment at the start of this epidemic are having a different life dealing with this disease and the treatments than the people that were infected or went onto meds literally decades later. We're discussing two radically different groups of people with different treatment/therapy regimens.

Quote
For what it's worth, I was diagnosed almost 20 years ago. I remember being prescribed AZT and being told if i didn't take it I would be dead in 10 years. I refused to take it. In fact, I didn't start treatment until December of 2002, 14 years after being diagnosed.
It really pisses me off to see how adamant some are to belittle the terrible times and horrible trials that have afflicted those who were infected and affected at the first of this epidemic. And how some people still belittle the problems the LTSs are still dealing with today by trivializing them, or poo-pooing them off to talk about the unaffected people. (as in the thread about ageing and HIV) It's hard enough making doctors understand and pay attention to these problems sometimes without other HIV+ people dissing people for talking about these issues.

Quote
I've never been to a funeral of someone who has died of AIDS. Hell...I don't even know of anyone personally who has died of AIDS.
in the politest of ways let me simply say, you lucky bastard.
Too bad we don't all have it as easy. Too bad all those other people died from it.

I nearly died from AIDS and pneumonia in a hospital twice. I've taken handfuls of the worse medicines imaginable that made me puke so much I thought death would be easier. I sat by the bedsides of two long-term partners (foregoing my own meds, food and sleep) till they passed away and I had to bury them and somehow find the strength to go on. Obviously you and I don't have the same disease at all and I really take offense at your bragging.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Dennis

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Re: In your opinion, what is a long term survivor?
« Reply #121 on: November 22, 2009, 03:16:38 PM »
No, I'm not being insensitive. Just as my Aunt who has been living with breast cancer for 23 years  is no less insensitive to her sister who has only been living with breast cancer for only 3 years.

Fighting over the definition of what a LTS is neither going to change my or your past. Nor is it going to help us progress forward. We each have our own path in life. And for anyone esle to diminish the plight of someone elses path just because you do not see as difficult as your own is insensitive.

It's quite obvious from the different remarks in this thread (which has been going on for how long?) that we each have our own conclusion as to what a LTS is. Where has it gotten us?

However, I'm honored that you consider me a LTS, despite me not being diagnosed pre AZT or losing countless friends. These appear to be two main criteria that need to be met in order to qualify as a LTS by the majority of definitions in this thread.

Below are loose definitions of what I found for a LTS. Notice, there's no mention of what drugs were available when or how many friends one has to watch pass away.

Here's a definition of LTS by ghmc.org...

     Long-Term Survivor: a looser term than LONG-TERM NONPROGRESSOR that indicates any person with any stage of HIV infection, including AIDS, who has been stable over a period of years.

Here are 8 characteristics of a LTS based on a 1987 research study  http://www.thebody.com/content/art52598.html

1. They are realistic and accept their diagnosis and do not take it as a death sentence.
2. They have a fighting spirit and refuse to be helpless/hopeless.
3. They have changed lifestyles.
4. They are assertive and have the ability to get out of stressful and unproductive situations.
5. They are tuned into their own psychological and physical needs -- and they take care of them.
6. They are able to talk openly about their illness.
7. They have a sense of personal responsibility for their health, and look at the treating health care provider as a collaborator.
8. They are altruistically involved with other persons with HIV.

In my opinion, ANYONE who lives with any type of terminal illness is a LTS!

Offline Dennis

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Re: In your opinion, what is a long term survivor?
« Reply #122 on: November 22, 2009, 03:30:47 PM »
I'm sorry you see this as bragging. Again, my experience is diminished because my experiences haven't been as horrific as others. This makes me no less a LTS, though. And yes, I consider this a manageble disease even though I was diagnosed in 1990 (10 years fprior to your 2000 year timeframe)

And by the way, I spent 3 weeks over X-Mas and New Years with PCP. I had 2 t-cells. I spent almost 2 months on oxygen therapy.

Bottom line is, I did what I needed to do to recoup and I don't dwell on it. I move forward the best I can with what I've got. Although I haven't forgotten the past, I don't dwell on it. I also don't let the past define who I am today.


I would disagree with your definition of calling this a manageable disease. Perhaps it is NOW for someone diagnosed 2000 and later; but many diagnosed before that time are still going to great lengths to fight back death. How about we call if a "barely manageable disease" to at least give a little reality to the great lengths many go to to stay alive a little bit longer.

I just don't understand why people can't see that the people infected that went onto treatment at the start of this epidemic are having a different life dealing with this disease and the treatments than the people that were infected or went onto meds literally decades later. We're discussing two radically different groups of people with different treatment/therapy regimens.
It really pisses me off to see how adamant some are to belittle the terrible times and horrible trials that have afflicted those who were infected and affected at the first of this epidemic. And how some people still belittle the problems the LTSs are still dealing with today by trivializing them, or poo-pooing them off to talk about the unaffected people. (as in the thread about ageing and HIV) It's hard enough making doctors understand and pay attention to these problems sometimes without other HIV+ people dissing people for talking about these issues.
in the politest of ways let me simply say, you lucky bastard.
Too bad we don't all have it as easy. Too bad all those other people died from it.

I nearly died from AIDS and pneumonia in a hospital twice. I've taken handfuls of the worse medicines imaginable that made me puke so much I thought death would be easier. I sat by the bedsides of two long-term partners (foregoing my own meds, food and sleep) till they passed away and I had to bury them and somehow find the strength to go on. Obviously you and I don't have the same disease at all and I really take offense at your bragging.
« Last Edit: November 22, 2009, 03:32:35 PM by Dennis »

Offline Dachshund

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Re: In your opinion, what is a long term survivor?
« Reply #123 on: November 22, 2009, 03:38:48 PM »
No, not everyone is a LTS and that "research" you use in my opinion is nonsense. Trite, to say the least. Someone living with AIDS since 2002 is not a LTS. Others may consider you a LTS, but I don't. I could be wrong, guess I'll have to wait for that book of yours to come out.

Offline Dennis

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Re: In your opinion, what is a long term survivor?
« Reply #124 on: November 22, 2009, 03:41:44 PM »
No, not everyone is a LTS and that "research" you use in my opinion is nonsense. Trite, to say the least. Someone living with AIDS since 2002 is not a LTS. Others may consider you a LTS, but I don't. I could be wrong, guess I'll have to wait for that book of yours to come out.

I wasn't diagnosed in 2002. I believe I stated I was diagnosed in 1990 and hospitalized with PCP in 2002.

What does my book have to do with this discussion? The only thing "trite" is your incessant need for personal attacks within these forums when someone disagrees with you. Anymore personal jabs you'd care to take?
« Last Edit: November 22, 2009, 03:51:09 PM by Dennis »

Offline Dennis

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Re: In your opinion, what is a long term survivor?
« Reply #125 on: November 22, 2009, 03:54:58 PM »
One last comment and I'm outa this thread.

Many of you forget the key word in Long Term SURVIVOR.

As a LTS, one should speak from the perspective of a survivor and not a victim.

Online leatherman

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Re: In your opinion, what is a long term survivor?
« Reply #126 on: November 22, 2009, 04:09:58 PM »
I'm sorry you see this as bragging. ...
Although I haven't forgotten the past, I don't dwell on it.
you still totally miss the point, which on one hand is a good thing, as I would never wish my experiences on anyone; but it does prove that you're not an LTS. Being a "survivor" means you have to actual "survive" going through something tramatic, otherwise it's just living normal life. Quite frankly, finding others here with similar experiences is what I came looking for and how I found some comfort and support from people here.

I can never forget the past. Forget all my dead friends who funerals I attended (I'm sure they'll forgive me for saying such a flip thing to make this point); but the fact that AIDS killed and put both Randy and Jim into the ground is a part of my past I'll never be able to forget or just not "dwell on". Lord I suffer enough survivor's guilt just wondering why/how I survived while all those other people died, much less outliving not one but two partners. (Christ almighty, Jim hasn't even been dead two years yet.)

When I recently moved, once again I had to not only go through boxes of stored memorabilia from both men, but I had to decide did I want to keep Jim's couch? How about this lamp that Randy bought all those years ago? What about these dishes that Randy bought? What about these sewing supplies from Jim's old house? After living 20 years with my two guys, nothing I own is MINE it's all OURS. How am I ever supposed to forget in a situation like this? My grandmother doesn't have to forget and put into the past the life she had for 50 yrs with my Grandfather, and I shouldn't have to put my past into the closet to appease YOUR idea of what an LTS is.

Just living everyday, not only for myself but for Randy and Jim, means I can never NOT think about the past. Every day that they, and all our old friends, are dead from AIDS, is a day I have to remember the past and dwell on what AIDS has done to my life. Every day that I wonder if my health issues are just age-related or from the past meds is a day I can't forget. Every day that I've lived since getting out of the hospital has been a day that AIDS didn't kill me, and I sure can't forget that. I've very thankful for that; and it would be a stupid way to live to not dwell on and appreciate how far I've come and how much I've lived through.

As I said, you obviously haven't lived with the disease that I have, so no I don't think that you're a LTS either. You have only lived with AIDS since 2002 - that's not even close to a decade, dude, how can you claim that's a long time? Come back and chat with me in another decade.

One last comment and I'm outa this thread.
Many of you forget the key word in Long Term SURVIVOR.
As a LTS, one should speak from the perspective of a survivor and not a victim.
As I look up at the pictures of Randy and Jim on the wall beside my computer desk, I feel just fine telling you that I don't think you're a lucky bastard; with the insensitivity you're shown in your comments, I just think you're a bastard.
leatherman (aka mIkIE)


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Offline Joe K

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Re: In your opinion, what is a long term survivor?
« Reply #127 on: November 22, 2009, 04:19:24 PM »
Sorry for the slight hijack. This thread has convinced me the introduction thread should be revised and I have started a new post on the subject.

Now, back to your regularly scheduled thread.

edited to add:
Dennis,

Can you consider the illogic of your comment regarding survivors and victims? While I speak with the experience of a survivor, at one time, I was a victim, just like the rest of us and to ignore that fact is horribly unfair to me and the experiences I have had. Since you seem to insist, that I must be either a survivor or victim, what do I do, when my reality is, I am both?

This isn't a pissing match about who had it tougher, it's a discussion about improving the condition of this forum.
« Last Edit: November 22, 2009, 04:23:57 PM by killfoile »

Offline Dachshund

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Re: In your opinion, what is a long term survivor?
« Reply #128 on: November 22, 2009, 04:23:46 PM »
I wasn't diagnosed in 2002. I believe I stated I was diagnosed in 1990 and hospitalized with PCP in 2002.

What does my book have to do with this discussion? The only thing "trite" is your incessant need for personal attacks within these forums when someone disagrees with you. Anymore personal jabs you'd care to take?

Nothing personal puddin', maybe you'll sign a copy for me when we're in Vegas.

Offline Dennis

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Re: In your opinion, what is a long term survivor?
« Reply #129 on: November 22, 2009, 04:24:24 PM »
Please consider reading my posts before replying to them.

On two seperate occassion I mentioned I was diagnosed with HIV in 1990.
I'm not quite sure why two of you continue to change my diagnosis date.

I never asked anyone to forget their past. However, I still stand by my opinion that a LTS should speak from the perspective of a survivor and not a victim.

As far as living through something tramatic, I guess having an AIDS diagnosis for at least 7 out of the past 20 years isn't tramatic enough. Here's a silly question. If I were to lose a friend tomorrow (knock on wood), would you consider me a LTS then? What if I were hospitalized with PCP for the second time next week? Would that make me a LTS. Or did all this have to happen prior to 1990?

I am a LTS because I have lived with HIV/AIDS for the past 20 years, and experienced what I experienced due to choices of my own, choices of others, and some plain ol' good luck. Again, I apologige that my experiences were not as horrific as yours.

Offline Dachshund

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Re: In your opinion, what is a long term survivor?
« Reply #130 on: November 22, 2009, 04:27:56 PM »
Please consider reading my posts before replying to them.

On two seperate occassion I mentioned I was diagnosed with HIV in 1990.
I'm not quite sure why two of you continue to change my diagnosis date.

I never asked anyone to forget their past. However, I still stand by my opinion that a LTS should speak from the perspective of a survivor and not a victim.

As far as living through something tramatic, I guess having an AIDS diagnosis for at least 7 out of the past 20 years isn't tramatic enough. Here's a silly question. If I were to lose a friend tomorrow (knock on wood), would you consider me a LTS then? What if I were hospitalized with PCP for the second time next week? Would that make me a LTS. Or did all this have to happen prior to 1990?

I am a LTS because I have lived with HIV/AIDS for the past 20 years, and experienced what I experienced due to choices of my own, choices of others, and some plain ol' good luck. Again, I apologige that my experiences were not as horrific as yours.

Here's a silly answer, no, no, and yes.

Online leatherman

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Re: In your opinion, what is a long term survivor?
« Reply #131 on: November 22, 2009, 04:37:18 PM »
On two seperate occassion I mentioned I was diagnosed with HIV in 1990.
I'm not quite sure why two of you continue to change my diagnosis date.
because being "HIV+" and "having AIDS" are two very different things. Doh! You'd think having PCP would have shown you the difference. It sure showed me - then spending another 5 yrs or so recovering from that just proved how different being "positive" is from "having aids".

Again, I apologige that my experiences were not as horrific as yours.
thanks.  :) That's so much nicer than when you aren't bragging about how many years you went before having AIDS, how many years you didn't take meds and how many of your friends and lovers aren't dead.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Dennis

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Re: In your opinion, what is a long term survivor?
« Reply #132 on: November 22, 2009, 04:39:57 PM »
Exactly...you WERE (past tense) a victim. You're not anymore. You are a survivor, as in Long Term Survivor. It's one thing to make mention of your horrific experiences. It's another to discuss how you overcame them. What made you stronger? This is how you help your fellow LTS's who experienced similar events. And this is how you help the newly diagnosed, or those like myself, understand and respect your struggles in a way that doesn't turn them off. Ultimately, your story is about what made you stronger in the face of death, not the disease that once knocked you down.

Unfortunately, when discussing "what a long term survivor" is, it does become a pissing match between who had it worse. And quite frankly, I'm disgusted that anyone would diminish the 20 years I have lived with this virus and tell me I'm not a LTS simply because I didn't have the same traumatic experiences they did.

edited to add:
Dennis,

Can you consider the illogic of your comment regarding survivors and victims? While I speak with the experience of a survivor, at one time, I was a victim, just like the rest of us and to ignore that fact is horribly unfair to me and the experiences I have had. Since you seem to insist, that I must be either a survivor or victim, what do I do, when my reality is, I am both?

This isn't a pissing match about who had it tougher, it's a discussion about improving the condition of this forum.

Offline Dennis

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Re: In your opinion, what is a long term survivor?
« Reply #133 on: November 22, 2009, 04:50:57 PM »
Nothing personal puddin', maybe you'll sign a copy for me when we're in Vegas.

I look forward to it! I only hope you remain as catty and bitchy in person as you are behind the comfort of your keyboard.

Offline Dachshund

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Re: In your opinion, what is a long term survivor?
« Reply #134 on: November 22, 2009, 05:03:38 PM »
I look forward to it! I only hope you remain as catty and bitchy in person as you are behind the comfort of your keyboard.

Don't you worry about that Miss Thing, I'm cattier and bitchier in person. We'll have a lot in common, if they don't cancel my room. ;)

Offline Dennis

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Re: In your opinion, what is a long term survivor?
« Reply #135 on: November 22, 2009, 05:16:03 PM »
Don't you worry about that Miss Thing, I'm cattier and bitchier in person. We'll have a lot in common, if they don't cancel my room. ;)

Why on earth would anyone cancel your reservation? I'm looking forward to personally escorting you to the top of the Stratosphere  :-*

Online leatherman

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Re: In your opinion, what is a long term survivor?
« Reply #136 on: November 22, 2009, 05:19:07 PM »
And quite frankly, I'm disgusted that anyone would diminish the 20 years I have lived with this virus and tell me I'm not a LTS simply because I didn't have the same traumatic experiences they did.
damn dude make up your mind.  ;D a while ago you apologized for not having any traumatic experiences, and now you're diminishing my actual real experiences by claiming that your NON-experiences are as traumatizing as the stuff I actually experienced.  ::) If you want, you more than welcome to my traumatic experiences and the aftermath. (Though personally, I don't think you could handle it) Have a nice time visiting the graves, puking from the pills, having all these health problems and living in poverty.

This is how you help your fellow LTS's who experienced similar events.
They don't need my help if they've made it this far. They just need a friendly shoulder to cry on once in a while before tackling it all again another day - without having to justify why they feel the way they do.

And this is how you help the newly diagnosed, or those like myself, understand and respect your struggles in a way that doesn't turn them off.
then listen to what we've been telling you. Your non-experiences aren't like ours were. Your meds aren't like our meds were. And don't make me name the names of the dead again since your friends are still alive.

If that turns you off, that's your problem. No where in the welcome to this thread does it say that I have to help or teach people how I managed to get through all the crap and get to this point today, it just says "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".

It also says: "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."

Every time you denigrate my experiences by claiming your non-experiences are somehow like mine, then it's you who's taking away the safe place and shouldn't be in this forum. So go post in the Living With section since you implied that you haven't faced any "special challenges".


mikie

oh, and I probably won't ever meet any of you in person. AIDS destroyed my livelyhood, took my health, forced me onto disability over a decade ago, and took two partners (and their incomes), now I'm so freaking poor I had to move back in with family to keep a roof over my head and food on the table. Now that's how traumatic AIDS can be when it lets you live. ;) As I said in one of the AMG thread, unless y'all hold it near me, I'll never be able to attend.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Miss Philicia

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Re: In your opinion, what is a long term survivor?
« Reply #137 on: November 22, 2009, 05:23:10 PM »

I've never been to a funeral of someone who has died of AIDS. Hell...I don't even know of anyone personally who has died of AIDS.

That was a large rock you hid under.
"Iíve slept with enough men to know that Iím not gay"

Offline Dachshund

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Re: In your opinion, what is a long term survivor?
« Reply #138 on: November 22, 2009, 05:27:24 PM »
Why on earth would anyone cancel your reservation? I'm looking forward to personally escorting you to the top of the Stratosphere  :-*

Oh I don't know puddin', shit happens. You're a personal escort and a wordsmith? How do you find the time?

Offline Miss Philicia

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Re: In your opinion, what is a long term survivor?
« Reply #139 on: November 22, 2009, 05:28:38 PM »

And by the way, I spent 3 weeks over X-Mas and New Years with PCP. I had 2 t-cells. I spent almost 2 months on oxygen therapy.

So, uh -- you almost died - that sounds pretty horrific even though earlier you stated you'd had no horrific experiences.  Do you regret not commencing treatment before that time?  Most would.  Or maybe you had a death sentence.

Just curious -- how often were you see an HIV specialist during those years of denial from 1990 - 2002?
« Last Edit: November 22, 2009, 05:40:06 PM by Miss Philicia »
"Iíve slept with enough men to know that Iím not gay"

Offline Moffie65

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Re: In your opinion, what is a long term survivor?
« Reply #140 on: November 22, 2009, 05:38:14 PM »
Thanks Dennis for showing us your colors in this thread.  Unfortunately, hateful, mean and bitter are not a part of my colorful rainbow, so I cannot really appreaciate the colors you've chosen for this thread; they clash with the meaning and tenor of the OP. 

Thanks everyone for your participation and especially Jan's concise definition of a LTS.  You rock!
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
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Offline Dennis

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Re: In your opinion, what is a long term survivor?
« Reply #141 on: November 22, 2009, 05:41:44 PM »
So, uh -- you almost died - that sounds pretty horrific even though earlier you stated you'd had no horrific experiences.  Do you regret not commencing treatment before that time?  Most would.  Or maybe you had a death .

Honestly, I spent most of that time in the hospitall re-thinking my prior actions. "What if I had started meds?" What if I didn't do all that ecstasy?" "What if this/that?" But today, I'm glad I didn't start treatment. AZT was the only thing prescribed to me at that time. The horror stories I've heard from other members just reiterated the little research I did at that time. I'm thankful to still be on my first rcocktail since 2002.

Offline Dennis

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Re: In your opinion, what is a long term survivor?
« Reply #142 on: November 22, 2009, 05:47:34 PM »
Thanks Dennis for showing us your colors in this thread.  Unfortunately, hateful, mean and bitter are not a part of my colorful rainbow, so I cannot really appreaciate the colors you've chosen for this thread; they clash with the meaning and tenor of the OP. 

Thanks everyone for your participation and especially Jan's concise definition of a LTS.  You rock!

I'm hateful, mean, and bitter? Because my experiences as a LTS are not the same as yours or most LTS in this thread?

I believe the OP stated all were welcome to post and you respected all opinions. I guess you meant to say was all opinions that correlate with your own.

Offline Dennis

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Re: In your opinion, what is a long term survivor?
« Reply #143 on: November 22, 2009, 05:48:44 PM »
Oh I don't know puddin', shit happens. You're a personal escort and a wordsmith? How do you find the time?

Easy...I don't fill my time with 4,782+ posts on aidsmeds

Offline Miss Philicia

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Re: In your opinion, what is a long term survivor?
« Reply #144 on: November 22, 2009, 05:52:25 PM »
Honestly, I spent most of that time in the hospitall re-thinking my prior actions. "What if I had started meds?" What if I didn't do all that ecstasy?" "What if this/that?" But today, I'm glad I didn't start treatment. AZT was the only thing prescribed to me at that time. The horror stories I've heard from other members just reiterated the little research I did at that time. I'm thankful to still be on my first rcocktail since 2002.

Yes, well as someone diagnosed in 1990 you should well know that the early does in 1987 of 1,200 mg were reduced to the now standard 300 mg in 1991, the same as what I was put on a year later.

Most people died at those large doses not because of evil AZT (though partly) but because by 1987 those patients had been infected for a decade or more (as Peter Staley wisely and repeatedly has pointed on on this forum if you read more threads).
"Iíve slept with enough men to know that Iím not gay"

Offline Miss Philicia

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Re: In your opinion, what is a long term survivor?
« Reply #145 on: November 22, 2009, 05:53:41 PM »
Easy...I don't fill my time with 4,782+ posts on aidsmeds

No, but 95% of them are in Forums Gathering when, in fact, you'd probably be better served educating yourself about treatment so that you don't sink to 2 t-cells.
"Iíve slept with enough men to know that Iím not gay"

Offline Miss Philicia

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Re: In your opinion, what is a long term survivor?
« Reply #146 on: November 22, 2009, 05:55:39 PM »
I'm hateful, mean, and bitter?

Well, you did call someone here catty and bitchy.  LIke that's the pot calling the kettle black.
"Iíve slept with enough men to know that Iím not gay"

Offline Dachshund

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Re: In your opinion, what is a long term survivor?
« Reply #147 on: November 22, 2009, 05:56:20 PM »
Easy...I don't fill my time with 4,782+ posts on aidsmeds

I'm not a fan of fiction, but do you have a working title? How 'bout Going Rouge? Now skidaddle Shakespeare and finish your tome.

Online Jeff G

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Re: In your opinion, what is a long term survivor?
« Reply #148 on: November 22, 2009, 05:57:03 PM »
 I have family that sometime ask me why I have dealt with depression or had to go into pain management . When I complained about being in pain one day my mom asked whats wrong with you ? People ask me this even though they know I have had to take buckets full of AZT and other crap for 26 yrs . They ask me this knowing I have had 3 times the recommended dose of 2 different chemo drugs . I have lost most every thing I hold dear more than a couple of times . I'm sure folks on here have had it worse than me so I'm not complaining ... at least not today .

I think a true long-Term Survivors  would not need to ask me the questions I wrote about here , they just know when you need a shoulder and probably what for .


Offline Dennis

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Re: In your opinion, what is a long term survivor?
« Reply #149 on: November 22, 2009, 06:18:16 PM »
Yes, well as someone diagnosed in 1990 you should well know that the early does in 1987 of 1,200 mg were reduced to the now standard 300 mg in 1991, the same as what I was put on a year later.

Most people died at those large doses not because of evil AZT (though partly) but because by 1987 those patients had been infected for a decade or more (as Peter Staley wisely and repeatedly has pointed on on this forum if you read more threads).

You're absolutely correct. I should read more posts on aidsmeds.com to reassure myself the choice not to go AZT in 1990 was the right choice for me at that time.  ::)

 


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