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Author Topic: Soooo angry I could explode!!!!! Arrrgh.  (Read 9937 times)

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Offline Ann

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #50 on: July 13, 2013, 06:32:07 PM »
This kind of reminds me of an amusing story that is pretty on topic.

I was invited to a meet and greet/fundraiser for a local aspiring young gay male politician.  They probably only invited us "old queens"  for our money,  but whatever.

It was a lovely event a real nice mix of young and old.

The aspiring pol took the stage to introduce himself and take questions from the audience. 

All was going well until one of the questions was "who is your favorite president".  To which the guy responded without hesitation "Ronald Reagan".

Well,  there was a noticeably audible gasp from us "old 
queens" in a clutch your pearls kind of way for obvious reasons.

But what was more interesting was that the young members of the audience didn't seem to understand why we reacted the way we did.

As the "old queens" trickled out,  the younger members in the audience still seemed puzzled as to what had just happened that they missed.

Sometimes we just don't understand each other.  It doesn't mean there is any malice behind it.


Amusing? I find that story heartbreaking. It's telling also. So many young adults have no idea how much sacrifice and suffering from the gay community went into turning hiv into the "manageable" illness that it is now.

Those who cannot remember the past are condemned to repeat it.




Very few able-bodied, doing-well-on-meds, young positive men and woman are stepping up to the plate to give respite to those who have been in the trenches since the 1980s and 90s.

True, many may not see the need right now. "I got mine, Jack."

Maybe they'll finally get involved when people start dying by the hundreds, monthly, again because governments and the pharmaceutical industry are no longer put under pressure and (more!) people start losing access to labs, monitoring and meds.

I sincerely hope it doesn't come to that, but unless new people take up the torch and carry on the work of advocacy, I'm afraid it will.

Sure, the charity sector across the board may be in trouble - paid positions are going by the wayside, organisations are folding - but do any of you honestly think the people who started the first hiv/aids activist groups were paid??? Do you think ACT-UP had a fat payroll?

No. They were volunteers, many of whom were actively dying as activists, so that others may live.

So that WE could have the easy-to-take meds that are available to us. Once-a-day, well-tolerated meds that enable us to live healthy lives. 

We all need to start ACTING-UP so that those who have been ACTING-UP for decades can sit down, take a break and enjoy their twilight years. We owe them that much. That much and more.



For the record, I do not in any way look down on or feel anger towards newly infected people "in this day and age" or however you want to put it.

We're all human - and part of being human is getting caught up in that heady mix of chemistry and hormones and the intense heat of the sexual moment.

Is it any wonder that sometimes we humans slip up, give in, be in the moment and have that hot, raw sex? Let's face it people, it's the reality of being human.

Putting on a condom is easy on paper. It's quite often easy in practice too - but the human reality is within us all and sometimes that reality sweeps us away. It's human nature and that's not going to change in a hurry.
« Last Edit: July 13, 2013, 06:35:25 PM by Ann »
Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline oksikoko

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #51 on: July 13, 2013, 06:39:05 PM »
No. They were volunteers, many of whom were actively dying as activists, so that others may live.

So that WE could have the easy-to-take meds that are available to us. Once-a-day, well-tolerated meds that enable us to live healthy lives. 

We all need to start ACTING-UP so that those who have been ACTING-UP for decades can sit down, take a break and enjoy their twilight years. We owe them that much. That much and more.

I agree, so I hope it didn't sound otherwise. I still see this as mainly a problem of the middle class - not saying it's their problem so I'll ignore it. I'm saying we have a problem with the way our middle class is structured or something. They are the ones with both the numbers and the means to make change, yet they feel they don't have to do anything for anyone as long as they're comfortable and have air conditioning and Xboxes (or whatever is popular now) to play with.

Is it any wonder that sometimes we humans slip up, give in, be in the moment and have that hot, raw sex? Let's face it people, it's the reality of being human.

For the record, I didn't get the benefit of the 'hot raw sex'.  ;) We get here all kinds of ways.
Code: [Select]
2013-10-03:                ☣ VL (=) undetectable ☣ CD4 (+) 1105
2013-05-23:                ☣ VL (=) undetectable ☣ CD4 (-) 945
2013-02-25:                ☣ VL (-) undetectable ☣ CD4 (+) 1123
2012-12-16: Enter Stribild
2012-11-20: HIV+           ☣ VL (→) 132,683      ☣ CD4 (→) 920
2012-04-01: HIV-
Dates in this signature file conform to ISO 8601. ;-)

Offline Ann

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #52 on: July 13, 2013, 06:41:36 PM »
Oksi, don't take this the wrong way, but none of my remarks were directed specifically at you. I was talking to the forum as a whole; to the world wide web (and any Martians or Romulans who may be listening in).
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline oksikoko

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #53 on: July 13, 2013, 06:47:54 PM »
Oksi, don't take this the wrong way, but none of my remarks were directed specifically at you. I was talking to the forum as a whole; to the world wide web (and any Martians or Romulans who may be listening in).

I didn't think they were. Just "participating" in a group discussion.

Online communication is far from perfected, but the gist of your message seems to be "be quiet".
Code: [Select]
2013-10-03:                ☣ VL (=) undetectable ☣ CD4 (+) 1105
2013-05-23:                ☣ VL (=) undetectable ☣ CD4 (-) 945
2013-02-25:                ☣ VL (-) undetectable ☣ CD4 (+) 1123
2012-12-16: Enter Stribild
2012-11-20: HIV+           ☣ VL (→) 132,683      ☣ CD4 (→) 920
2012-04-01: HIV-
Dates in this signature file conform to ISO 8601. ;-)

Offline Ann

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #54 on: July 13, 2013, 06:57:08 PM »
I didn't think they were. Just "participating" in a group discussion.

Online communication is far from perfected, but the gist of your message seems to be "be quiet".

No, my message was NOT "be quiet". I had the feeling you were taking my words personally. I'm extremely tired (it's nearly midnight here and I had a busy day) and I didn't want to get into a detailed "quote and reply" session right now - with anyone. That's why I didn't direct my comments to any specific person.

I'll be interested in reading further conversation between members tomorrow when I get up. :)

Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline mitch777

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #55 on: July 13, 2013, 08:46:14 PM »
Amusing? I find that story heartbreaking. It's telling also. So many young adults have no idea how much sacrifice and suffering from the gay community went into turning hiv into the "manageable" illness that it is now.

Those who cannot remember the past are condemned to repeat it.




Very few able-bodied, doing-well-on-meds, young positive men and woman are stepping up to the plate to give respite to those who have been in the trenches since the 1980s and 90s.

True, many may not see the need right now. "I got mine, Jack."

Maybe they'll finally get involved when people start dying by the hundreds, monthly, again because governments and the pharmaceutical industry are no longer put under pressure and (more!) people start losing access to labs, monitoring and meds.

I sincerely hope it doesn't come to that, but unless new people take up the torch and carry on the work of advocacy, I'm afraid it will.

Sure, the charity sector across the board may be in trouble - paid positions are going by the wayside, organisations are folding - but do any of you honestly think the people who started the first hiv/aids activist groups were paid??? Do you think ACT-UP had a fat payroll?

No. They were volunteers, many of whom were actively dying as activists, so that others may live.

So that WE could have the easy-to-take meds that are available to us. Once-a-day, well-tolerated meds that enable us to live healthy lives. 

We all need to start ACTING-UP so that those who have been ACTING-UP for decades can sit down, take a break and enjoy their twilight years. We owe them that much. That much and more.



For the record, I do not in any way look down on or feel anger towards newly infected people "in this day and age" or however you want to put it.

We're all human - and part of being human is getting caught up in that heady mix of chemistry and hormones and the intense heat of the sexual moment.

Is it any wonder that sometimes we humans slip up, give in, be in the moment and have that hot, raw sex? Let's face it people, it's the reality of being human.

Putting on a condom is easy on paper. It's quite often easy in practice too - but the human reality is within us all and sometimes that reality sweeps us away. It's human nature and that's not going to change in a hurry.
Well, personally I wasn't in the trenches at any point along the way with being infected. Just tried to do my best to survive. Many of us LTS did the same. Am I grateful for those who made a difference? Goes without saying.
Ann, I know I don't have the authority to put a sticky on your reply here but I would if I could. :)
It's nice to see passion with insight and empathy. (trifecta so to speak)
I think this whole thread has all of the above and I thank you all.
Seems like we have more in common than a disease.
m.

ps- thank you Auspoz where ever you are for the seed.
« Last Edit: July 13, 2013, 08:49:08 PM by mitch777 »
31 years hiv+ (oct. 2013) with a curtsy.

Offline tednlou2

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #56 on: July 14, 2013, 12:34:09 AM »
Ted,
Read reply #18. I think it explains it best.

In reality, there are no "good ones" but some of the newly infected believe that the LTS's consider themselves as the "innocent" victims. I don't doubt some LTS's DO feel this way but I think it's a very small percentage. Most of us LTS's have a lot of empathy for the newly infected but along with the empathy comes the frustration and anger that this disease continues to exist. Some mistakenly express that anger and frustration toward the newly infected instead of the disease.

It's understandable why this creates a bit of friction. Just wish some people wouldn't lump all LTS's as being judgmental and wish some people wouldn't lump all of the newly infected as careless and stupid.

A better understanding of each other helps.
This has been a good discussion IMHO. :)

Yeah, I never understood that thinking.  At least by 1985 (really a little sooner), it was well known how the virus was transmitted.  Of course, many were infected back to the 70's, so they obviously didn't know sex could give you a deadly virus.  Btw, I'm not suggesting I see this mentality here. 

About young people getting involved-- Well, there are many factors.  Many are still coming to terms with their infections.  Many have retreated from society, due to depression and despair.  Many are afraid to publicly speak out, for fear their status will be learned.  They don't need meds yet, and haven't learned the issues.  This is similar to marriage equality, although I think that is changing.  When I attend marriage equality events, it is usually 40 and older gays in attendance.  We see how the inequality affects us.  Many younger people are still dating and hooking up, so they aren't thinking about marriage rights.  I think it is just how every cause works.  It often isn't until you're older, that you get involved.  The same with politics.  I didn't become active until the 2000 election.  I still can't remember whether I voted for Clinton in 1996.  I think I would have remembered my first election, so I don't think I did.  That's the first election I could have voted. 

I contacted our ADAP organization to see how I could get involved.  I explained with my anxiety issues, I wouldn't be good at public speaking or even attending large rallies at that point.  But, I could volunteer in other ways.  I could write letters, or work behind the scenes.  I was told no one was being allowed to go without meds, who needed them.  I was told no one was being allowed to die.  I was told if someone was in dire need, they would get the meds.  They said it was those with good labs, who would have to wait.  They said it just meant those wanting to hit very early would have to wait.  I didn't just take that as the gospel, so I contacted the state organization that oversees the program.  They replied with the same response.  They literally said people being allowed to get sick and die on a waiting list was overblown.  And, was just not true.  So, I was left feeling there was nothing for me to do on that front. 

I thought that was odd.  I would have thought they would want people advocating for more funding, even if what they said was true.  Even if no one was being allowed to die, I am sure it causes a lot of problems, having to make decisions who gets bumped up and who doesn't.  Or, having to find other resources for meds.  It seemed it would make their jobs easier, if they didn't have to make those decisions.  But, I was turned away at both the local and state levels.  I did send emails to my representatives, though.  And, I took myself out of ADAP.  I got on before the waiting list.  I eventually got insurance, but the ADAP coordinator kept renewing my eligibility, just in case I lost my insurance.  I didn't feel good about that.  He said I was not keeping someone else on the waiting list, because I was not using the program.  He said if I needed to start meds, I would obviously have to use my insurance.  But, if I needed to start meds and lost my insurance, I would already be in.  I still had him cancel my eligibility, as that didn't seem right to me.  I felt I should have to get in line again, because I had gotten insurance in the meantime-- even if I would have lost it at the time I needed meds. 

Offline BT65

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #57 on: July 14, 2013, 04:49:29 AM »
I was not "older" when I got involved in the HIV arena.  I got involved when I was diagnosed-at 24 yrs old.  Of course at that time people were dying on a regular basis.  But I wanted to make a difference, and also had to advocate many times for my own care. 

I mean, what makes people think we took the time to "adjust" to our diagnosis?  Of course there's anger and the need to accept, but we didn't have time to "adjust" and let things sink in.  We had to get involved if we wanted care. 

Just for clarification, I have taken part in protests in this small area of Indiana.  I remember when a good friend, who had just gotten out of the hospital and was in his last chapter of life, was turned down for disability.  I took part in a protest outside the Social Security office.  He got his disability.  Not saying what we did decided that, but something needed to be done to let them know they were not getting away with not giving someone his deserved pittance, without being held accountable. 

Btw, I'm not for an us vs them situation.  But I agree with Ann, more people need to get involved today.  For those who cannot get access to meds, or for funding that is continuously getting cut. 

I do not get angry regarding newly infected.  At the ASO I work at, we have had several intakes over the past few months.  More than last year.  Of course it would be nice if some younger people didn't have an invincible attitude and took precaution to prevent becoming infected.  But as Ann said, that's not reality.  When the heat of the moment strikes, Lord knows we act out of desire. 

I don't know what else to say, it's super early and I had a difficult night.  This is a good discussion and I have been following it.  I just hope people do get active as more services get cut and more people need quality treatment.  Where I work, we're all over worked.  We all have more people on our caseloads than is usually allowed.  But there's no money for more staff.  Hopefully soon.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Online bmancanfly

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #58 on: July 14, 2013, 11:45:23 AM »
Amusing? I find that story heartbreaking. It's telling also. So many young adults have no idea how much sacrifice and suffering from the gay community went into turning hiv into the "manageable" illness that it is now.

When I said it was amusing I meant how the two factions in this discussion are speaking two different languages,  not that some peoples ignorance of history is amusing.  And that ignorance is prevalent about all history not just HIV history.  You can't force people to know our history,  they have to want to.

People come to this movement because they feel that it speaks to their needs.  All the haranguing and shaming in the world won't turn young people on to the movement if they don't perceive that their needs are being understood,  respected,  and met.

"Come join our movement,  you owe us"  isn't a very convincing recruiting tool.
"The trouble with the world is that the stupid are cocksure and the intelligent are full of doubt."

 Bertrand Russell

Offline Ann

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #59 on: July 14, 2013, 12:25:01 PM »
When I said it was amusing I meant how the two factions in this discussion are speaking two different languages,  not that some peoples ignorance of history is amusing.  And that ignorance is prevalent about all history not just HIV history.  You can't force people to know our history,  they have to want to.

People come to this movement because they feel that it speaks to their needs.  All the haranguing and shaming in the world won't turn young people on to the movement if they don't perceive that their needs are being understood,  respected,  and met.

"Come join our movement,  you owe us"  isn't a very convincing recruiting tool.

Sorry, I misunderstood why you thought it was amusing.

However, an aspiring politician, of all people, should be aware of history, particularly recent history. It's not like I was expecting him to be able to give me chapter and verse on the signing of the Magna Carta for goodness sake.

I don't believe I was haranguing or shaming anyone. It's just a simple fact that we are going to lose many of the gains that have been made if people remain as complacent as they are today. We're already losing many of them in the form of ASOs being closed and case workers having more people under their remit than they are able to handle efficiently and thoroughly.

Our numbers (hiv positive people) continue to grow, all the while support systems for PLWHA continue to dwindle.

It all reminds me of the poem (of which there are several versions) attributed to pastor Martin Niemöller (1892–1984) about the sloth of German intellectuals following the Nazis' rise to power and the subsequent purging of their chosen targets, group after group.


    First they came for the communists,
    and I didn't speak out because I wasn't a communist.

    Then they came for the socialists,
    and I didn't speak out because I wasn't a socialist.

    Then they came for the trade unionists,
    and I didn't speak out because I wasn't a trade unionist.

    Then they came for the Jews,
    and I didn't speak out because I wasn't a Jew.

    Then they came for the Catholics,
    and I didn't speak out because I wasn't a Catholic.

    Then they came for me,
    and there was no one left to speak for me.


As I said earlier, I worry that people are only going to sit up and take notice when they suddenly find they have no where to turn when they start falling through the cracks, cracks that are widening by the day.


"Come join our movement,  you owe us"  isn't a very convincing recruiting tool.

No, but "Come join our movement, your very life may one day depend on it." should be a convincing recruiting tool and was more to the point I was trying to make.

We're all standing on the shoulders of those who fought for what we have today - when those shoulders are gone, what happens then?
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Habersham

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #60 on: July 14, 2013, 12:26:14 PM »
Oksi, don't take this the wrong way, but none of my remarks were directed specifically at you. I was talking to the forum as a whole; to the world wide web (and any Martians or Romulans who may be listening in).

I've been following this from the sidelines and this is why I refrain from posting. Some here don't recognize the differences between forums and blogs, that different experiences make for different conclusions.  I'll quietly find my own way out.
Because I Can

Offline Ann

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #61 on: July 14, 2013, 12:36:53 PM »
I've been following this from the sidelines and this is why I refrain from posting. Some here don't recognize the differences between forums and blogs, that different experiences make for different conclusions.  I'll quietly find my own way out.

Sorry you feel that way, but did you actually read my subsequent response to Oksi?

No, my message was NOT "be quiet". I had the feeling you were taking my words personally. I'm extremely tired (it's nearly midnight here and I had a busy day) and I didn't want to get into a detailed "quote and reply" session right now - with anyone. That's why I didn't direct my comments to any specific person.

I'll be interested in reading further conversation between members tomorrow when I get up. :)


I've been a member of these forums since 2001 - I think I know the difference between a forum and a blog, thank you very much.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline leatherman

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #62 on: July 14, 2013, 04:51:39 PM »
"Come join our movement,  you owe us"  isn't a very convincing recruiting tool.
I don't believe that anyone has said to join the "movement" because this participation is owed to anyone for what happened in the past. That's a gross misunderstanding of why members have spoken about people being part of the movement in the past. People joined and were part of the "movement" to simply stay alive - by demanding meds and demanding access to healthcare. Prior to people standing up and acting up, the government was more than happy to let people die.

but don't pay attention to just the early history of the HIV epidemic. Look at more recent events. I live in a state where a person died in 2006 and another died in 2008 on the ADAP waiting list - because for them the system didn't work well enough or fast enough to keep those people alive. During those years, our state government were actively trying to totally defund the ADAP - even though the program was clearly failing and needed assistance not destruction. That's the future that could happen if no one continues the movement of guarding our benefits and access to meds and healthcare.

how about "come join our movement, or lose you access to meds and die". I think that ought be pretty convincing. ;)
leatherman (aka mIkIE)


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

Online mecch

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #63 on: July 14, 2013, 05:35:18 PM »
The other night I watched the 1974 documentary Hearts and Minds about the Vietnam War.
http://en.wikipedia.org/wiki/Hearts_and_Minds_(film)

Its sobering that history repeated itself about 35 years later in Iraq. 

Sometimes we humans seem like such dumbasses when we know the risks and yet stomp forward, to make what in hindsight seem such avoidable mistakes... 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Ann

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #64 on: July 14, 2013, 05:48:55 PM »

how about "come join our movement, or lose you access to meds and die". I think that ought be pretty convincing. ;)

Well put. Much more stark and to the point than what I'd suggested.

It's not only the US where people need to start paying attention. In this current world economy, social and health programs everywhere are all too often amongst the first to have their funding slashed.

It is much more difficult to replace a lost ASO than it is to fight for and retain existing services - but fight we must, or these safety nets are going to be slashed. Are being slashed.

There may be trouble ahead...
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Online bmancanfly

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #65 on: July 15, 2013, 11:51:27 AM »
That's a gross misunderstanding of why members have spoken about people being part of the movement in the past. People joined and were part of the "movement" to simply stay alive - by demanding meds and demanding access to healthcare. Prior to people standing up and acting up, the government was more than happy to let people die.


You're framing this as if you are disagreeing with me ,  then go on to say almost they same thing I was saying.  Our generation participated out of an immediate perceived self interest.  And so will the next generation - if they can be made to see it.

The question is how do you motivate them to see that?  My point was that sometimes the messaging comes across as a little self serving and preachy (and it's very very understandable why some people are burnt out).  But if you want to turn off 20 and 30 something's that's the way to do it.  Another way to turn them off is to not listen to what they have to say when they try to express their needs and frustrations,  and you only want to talk about your own. 

We all agree that more community participation is better,  but I don't quite share this dystopic view of the future that some have expressed here,  where disaster is imminently around the corner.  This does not mean that continued vigilance isn't necessary  but I'm much more optimistic about the future than some here.


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Offline Jeff G

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #66 on: July 15, 2013, 12:17:20 PM »
It was my experience that many of the people who stood with us in the early years were not HIV positive or motivated by self interest , they did it because there was a need and because it was right  . I just wanted to add this to give credit where credit is due .

If the next generation of HIV positive folks wants to leave the decisions on how and when health care and services or meted out in the hands of bureaucrats and drug company's its their choice to make but make no mistake it is a choice with consequences .     

Online bmancanfly

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #67 on: July 15, 2013, 12:32:26 PM »
It was my experience that many of the people who stood with us in the early years were not HIV positive or motivated by self interest , they did it because there was a need and because it was right  . I just wanted to add this to give credit where credit is due .

If the next generation of HIV positive folks wants to leave the decisions on how and when health care and services or meted out in the hands of bureaucrats and drug company's its their choice to make but make no mistake it is a choice with consequences .     

Totally agree.

"The trouble with the world is that the stupid are cocksure and the intelligent are full of doubt."

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Offline Joe K

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #68 on: July 15, 2013, 01:29:48 PM »
It was my experience that many of the people who stood with us in the early years were not HIV positive or motivated by self interest , they did it because there was a need and because it was right  . I just wanted to add this to give credit where credit is due .

Thanks Jeff,

No truer words could be written.  In Detroit, the lesbian community stood by our side from the very beginning.  They supported the poz community in every way imaginable and eventually they took over the AIDS Quilt and brought a huge section of it to Detroit.  They were not motivated by being personally infected, they simply recognized the scourge of HIV and responded to the needs of our community.

As I recall how much they helped our community, I am reminded of how powerful the human spirit can be and how special some folks are in selflessly helping others, simply because they can.

Joe

Offline whymeetc

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #69 on: July 15, 2013, 02:28:59 PM »
Shit happens. Pozzies should know that better than anyone.
September 4, 2012

Offline buginme2

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #70 on: July 15, 2013, 03:20:50 PM »
I don't believe that anyone has said to join the "movement" because this participation is owed to anyone for what happened in the past. That's a gross misunderstanding of why members have spoken about people being part of the movement in the past. People joined and were part of the "movement" to simply stay alive - by demanding meds and demanding access to healthcare. Prior to people standing up and acting up, the government was more than happy to let people die.

but don't pay attention to just the early history of the HIV epidemic. Look at more recent events. I live in a state where a person died in 2006 and another died in 2008 on the ADAP waiting list - because for them the system didn't work well enough or fast enough to keep those people alive. During those years, our state government were actively trying to totally defund the ADAP - even though the program was clearly failing and needed assistance not destruction. That's the future that could happen if no one continues the movement of guarding our benefits and access to meds and healthcare.

how about "come join our movement, or lose you access to meds and die". I think that ought be pretty convincing. ;)

I agree that people should be their own advocate.  Advocate for your care and your access to care.  If you don't who will?  It could be life or death.

However, with that said.  It's not 1985, its not 1995.  Today, most or all newly infected people with HIV do have access to care and are put on medication in short order.  This reduces the health impact of the illness so most can enjoy a relatively normal life sans taking a pill each day.  There is little to protest from a newly infected persons point of view. 

This leaves two different camps of HIV positive people.

LTS's who may experience more active health conditions directly related to the virus and who may require ASO services and newly infected people who experience little or no ill effects from the virus and may not have as strong a need for ASO's or other services.

Sometimes it's as if we are experience different diseases. 

As technology progresses as far as research into the disease (cure?) and Obamacare takes further effect I'm under the assumption that ADAP is going to be phased out and many aso's will close.   Is this progress or a step back? I don't know.

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #71 on: July 15, 2013, 03:32:30 PM »
Serious question . Do some of you newly poz members think LTS are still living in 85 - 95 mindset and only see the issues through that lens ?

I have wondered about this and ask it in the spirit of trying to better understand what seems to be some perceived divide between the newly infected and us aidsosaurs . 


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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #72 on: July 15, 2013, 03:58:39 PM »
Can I ask a question about your question?

It's something that has puzzled me for a while.  Where does someone like me fit in?

I'm certainly not newly infected.  But by the definition of this website I'm not a LTS either - even though I tested poz over a decade ago,  and have probably been poz for more than fifteen years.  I lived through all the darks days of the AIDS years in Manhattan losing my partner of 12 years and quite a few friends.  So I know what it was like.   The ranks of people like me are growing ever year,  1995 was 18 years ago and we're still calling everyone in the "Living With" forum....... what?  Newbies?  LTS wannabes?  The nomenclature here seems to be a bit out of date.

So where do I fit into your question?



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Offline Jeff G

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #73 on: July 15, 2013, 04:35:29 PM »
Can I ask a question about your question?

It's something that has puzzled me for a while.  Where does someone like me fit in?

I'm certainly not newly infected.  But by the definition of this website I'm not a LTS either - even though I tested poz over a decade ago,  and have probably been poz for more than fifteen years.  I lived through all the darks days of the AIDS years in Manhattan losing my partner of 12 years and quite a few friends.  So I know what it was like.   The ranks of people like me are growing ever year,  1995 was 18 years ago and we're still calling everyone in the "Living With" forum....... what?  Newbies?  LTS wannabes?  The nomenclature here seems to be a bit out of date.

So where do I fit into your question?





Im not the best person to answer your question quite frankly because I do not make assumptions on what leg of the journey an individual may be on .

To be honest , about the only time I get irritated when this kind of thread pops up is when people of any age or experience refuse to see that sometime you can see where something is going from where you have been .

Offline mitch777

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #74 on: July 15, 2013, 05:02:00 PM »
Serious question . Do some of you newly poz members think LTS are still living in 85 - 95 mindset and only see the issues through that lens ?

I have wondered about this and ask it in the spirit of trying to better understand what seems to be some perceived divide between the newly infected and us aidsosaurs . 


exactly.                   
Can I ask a question about your question?

It's something that has puzzled me for a while.  Where does someone like me fit in?

I'm certainly not newly infected.  But by the definition of this website I'm not a LTS either - even though I tested poz over a decade ago,  and have probably been poz for more than fifteen years.  I lived through all the darks days of the AIDS years in Manhattan losing my partner of 12 years and quite a few friends.  So I know what it was like.   The ranks of people like me are growing ever year,  1995 was 18 years ago and we're still calling everyone in the "Living With" forum....... what?  Newbies?  LTS wannabes?  The nomenclature here seems to be a bit out of date.

So where do I fit into your question?
I hear what you are saying and I wasn't here when the decision was made to create a portion of this forum for LTS but (I hope to be corrected if my guess is wrong) I believe the experience of being diagnosed during the period of time when HIV was still considered a death sentence, with NO life saving meds available, had a profound impact in our lives.
It shaped us in ways that truly can't be imagined unless you were faced with it yourself.
Again... it's just that we had a different experience living with HIV.
I'm sure there was more involved but put simply, those who got the diagnosis after life saving meds became available had a different reality.
ps- maybe this is why you are pretty diplomatic. kinda in between the 30+ years of the HIV being around.
Thanks Jeff,

No truer words could be written.  In Detroit, the lesbian community stood by our side from the very beginning.  They supported the poz community in every way imaginable and eventually they took over the AIDS Quilt and brought a huge section of it to Detroit.  They were not motivated by being personally infected, they simply recognized the scourge of HIV and responded to the needs of our community.

As I recall how much they helped our community, I am reminded of how powerful the human spirit can be and how special some folks are in selflessly helping others, simply because they can.

Joe

Not to confuse the topic but I often wonder if there IS much of a sense of community these days. I'm sure it exists but it doesn't seem as strong.
Perhaps the change in society with more acceptance has helped many younger people feel more mainstream. That's a good thing but...
« Last Edit: July 15, 2013, 05:06:27 PM by mitch777 »
31 years hiv+ (oct. 2013) with a curtsy.

Offline skeebo1969

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #75 on: July 15, 2013, 05:29:30 PM »
However, with that said.  It's not 1985, its not 1995.  Today, most or all newly infected people with HIV do have access to care and are put on medication in short order.  This reduces the health impact of the illness so most can enjoy a relatively normal life sans taking a pill each day.  There is little to protest from a newly infected persons point of view. 

This leaves two different camps of HIV positive people.

LTS's who may experience more active health conditions directly related to the virus and who may require ASO services and newly infected people who experience little or no ill effects from the virus and may not have as strong a need for ASO's or other services.

Sometimes it's as if we are experience different diseases. 

I agree with this. 

This disease left you no options back in 85, and at best, some hope in 95.  The battle lines were drawn because there was a need to fight for that did not exist.  There was little knowledge on exactly what we were dealing with, which has changed today and keeps evolving to new standards.  Example, when I was diagnosed you waited till Cd4 counts dropped to around 300 before you started treatment; now it's hit it early and soon after diagnosis.

Due to the millions of people lost to this disease, just about everyone living today has somehow been affected by its past.

Even I, a heterosexual male growing up in Miami, remember the stigma and hatred towards many of my Haitian friends I went to school with.  Being in drug rehab at a young age, I watched many people come back from getting diagnosed with HIV and how dreadful it was to know this people had limited time.  As a young kid, I often thought to myself I wouldn't even try to get sober if it were me.

I hate to use a cliché, but that battle has been won and the war has shifted more towards fighting stigma, educating, and of course-- continued progress at better treatment plans/options for both us and people who are diagnosed in the future.  This falls on all of us today, whether newly diagnosed or LTS.  I think we all make a difference in a common plight that's no longer a certain death sentence.

I think this is a good thing.

I have so much more to say, but I have to get to the pharmacy to get my wife her vicodin prescription filled to ease her pain from oral surgery today.  Something she would have probably been denied if it were not for the good fight put up by the LTS both living and gone.  Then I have to trudge my butt into the kitchen to cook a meal for the kids.... This 8 years after entering the forum as Sadtom and thinking I would never get to see them reach graduation.

I am grateful.

I despise the song Love is in the Air, you should too.

Offline mitch777

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #76 on: July 15, 2013, 06:13:37 PM »
Personally I find this thread to be much more educational to all of us rather than confrontational.
Understanding comes through rational discussion.
Thanks. :)
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Online bmancanfly

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #77 on: July 15, 2013, 06:31:51 PM »
                    I hear what you are saying and I wasn't here when the decision was made to create a portion of this forum for LTS but (I hope to be corrected if my guess is wrong) I believe the experience of being diagnosed during the period of time when HIV was still considered a death sentence, with NO life saving meds available, had a profound impact in our lives.
It shaped us in ways that truly can't be imagined unless you were faced with it yourself.
Again... it's just that we had a different experience living with HIV.
I'm sure there was more involved but put simply, those who got the diagnosis after life saving meds became available had a different reality.
ps- maybe this is why you are pretty diplomatic. kinda in between the 30+ years of the HIV being around.
Not to confuse the topic but I often wonder if there IS much of a sense of community these days. I'm sure it exists but it doesn't seem as strong.
Perhaps the change in society with more acceptance has helped many younger people feel more mainstream. That's a good thing but...

Thanks Mitch.  Let me make it clear that I was in no way disputing the need for an LTS forum, that need is clear and obvious in my opinion.  I'm just often confused by the terminology we use when someone uses that phrase because not everyone fits neatly into one category or the other.  But it really seems more like a Pre Haart Survivors forum,  since the only qualification to post there is that you be diagnosed in the pre-Haart era.

So no one,  ever again,  regardless of how long they have hiv will ever be considered a long term survivor - unless they were diagnosed in '95 or prior?  Even if you have hiv for 10, 20, 30, 40 years? 

If so, then in answer to Jeff's question,  it may not be that the people are stuck in a '95 mind set but that that definition is.

P.S.  I've got to go cook my Pre Haart Survivor husband dinner now.  He's on his way home from work.  Interesting conversation.   ;)
« Last Edit: July 15, 2013, 06:36:45 PM by bmancanfly »
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Offline Joe K

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #78 on: July 15, 2013, 06:48:00 PM »
It's something that has puzzled me for a while.  Where does someone like me fit in?

I'm certainly not newly infected.  But by the definition of this website I'm not a LTS either - even though I tested poz over a decade ago,  and have probably been poz for more than fifteen years.  I lived through all the darks days of the AIDS years in Manhattan losing my partner of 12 years and quite a few friends.  So I know what it was like.   The ranks of people like me are growing ever year,  1995 was 18 years ago and we're still calling everyone in the "Living With" forum....... what?  Newbies?  LTS wannabes?  The nomenclature here seems to be a bit out of date.

I'm curious on how you propose we structure the forums, to address the "betweeners" that are not LTS or newly infected.  The LTS forum was created at a time when there was great friction between those of us infected decades ago and newer members of the forum.  We didn't have an LTS forum and we often found that subjects involving either LTS or newly infected issues were creating friction in the Living With HIV forum. 

We asked the owners of this forum to create the LTS and as a forum we developed the criteria for posters in the newly created LTS forum.  For me, the reason we needed to do this, is because unless you lived with both the virus and the horror it created, your experience with HIV will never fully relate to the experience of LTS.  It's not an issue of one experience being more genuine than another, it's about two versions of living with HIV and those experiences that can never meet.

We started the LTS forum, because we are living a life that is unique, as we have lived with HIV for decades and that longevity has come with a heavy price.  Another reason we created the LTS forum was our issues are not relevant to those more recently infected and that's a wonderful thing, but it does not change our reality.  As we enter our 50s and beyond, we are experiencing issues that generally affect people much older than us.  Nobody knows what prolonged effects the meds may cause, because we are the first to survive so long on meds.  What we do know, is our experience with HIV will forever be unique.  Please note I did not say "better", just unique.  In a way, it's not just about how we lived, it's about "when" we lived.

Forum history has also shown, that it's not healthy to scare the newly infected with tales from LTS or folks who have a few years under their belt and that's why the I Just Tested forum was created.  My point is we already have sub-divisions in the forums and the LTS forum will forever be unique, because there are no more folks who were diagnosed Pre-Haart.  We are living a life that hopefully no others will ever experience in regards to long term infection, prior to effective treatments and the consequences when no treatments were available.

Where I'm missing a distinction is that folks who are poz, even for a decade or more, have much more in common with the more recently infected, than they ever will with LTS and I don't understand what kind of new forum division you are proposing?  I believe I understand what you are saying, I'm just unsure on how you feel the forum could meet that need.

Joe 

Offline oksikoko

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #79 on: July 15, 2013, 07:10:20 PM »
We asked the owners of this forum to create the LTS and as a forum we developed the criteria for posters in the newly created LTS forum.  For me, the reason we needed to do this, is because unless you lived with both the virus and the horror it created, your experience with HIV will never fully relate to the experience of LTS.  It's not an issue of one experience being more genuine than another, it's about two versions of living with HIV and those experiences that can never meet.

This would ring more true if there were a forum section where LTSers are forbidden the way "newly" (ten years is still new?) infected people are from the LTS forum. I don't propose such a forum or care that you have a private forum, mind you, even though it could be argued that the newly infected need a place to talk freely without being preached at by well meaning elders.

The LTS experience is definitely seen as more genuine here, not through malice, just a sort of reality distortion field, the way the baby boomers somehow think they're the greatest generation - they can't see past themselves to see the value of every generation. It's also shell shock kind of thing. You hear Vietnam veterans and those from World War II have those sorts of discussions. No one really wins, but lots of people get their feelings hurt and many others just tune out of the conversation.

Please remember that while most of us have never had the experience you had, we all appreciate that experience. It goes without saying. But the experience that we're having is also unique. You've never had it and neither have we. HIV is hanging, people's perceptions about us are changing, the perception of how much help and compassion we need is changing and it's a new world that we'll all have to learn to live in. I doubt any of your friends told you you deserved HIV. Just your enemies said that. We live in a world now where it seems increasingly common for people's friends/family to have little to no compassion because "we should have known better." Money for programs is drying up not just because of the apathy of the newly infected, though that's a handy scapegoat. It's also drying up because HIV is being normalized into something akin to diabetes. Agree with that or not, it's happening. And maybe it's good. I have no idea. But HIV still creates special needs in my opinion, and we're in a world where others share that opinion less and less. Not more and more as in the world you experienced when newly positive. That's how thesse great programs were built because compassion was growing then. It's no longer. Maybe you did experience some of these things. I don't know. But it's not part of the narrative I've heard, and seems to be a very disturbing new development.

All this talk of not knowing what drugs will do to you since there's no precedent? That's true of any novel drug for any ailment. Can't wait to find out what integrase inhibitors and pharmacokinetic enhancers do to a guy my age, and there's no one to ask because no one knows. Plus ça change, it's always a new world out there. Mixing cobicistat with aripiprazole and risperdol seems like a bad idea to me, but we're "experimenting" for the good of future patients, so at least I know someone will benefit from my uncertainty.

What we do know, is our experience with HIV will forever be unique.  Please note I did not say "better", just unique.  In a way, it's not just about how we lived, it's about "when" we lived.

So will ours. I didn't experience yours, and you're definitely not experiencing mine.
Code: [Select]
2013-10-03:                ☣ VL (=) undetectable ☣ CD4 (+) 1105
2013-05-23:                ☣ VL (=) undetectable ☣ CD4 (-) 945
2013-02-25:                ☣ VL (-) undetectable ☣ CD4 (+) 1123
2012-12-16: Enter Stribild
2012-11-20: HIV+           ☣ VL (→) 132,683      ☣ CD4 (→) 920
2012-04-01: HIV-
Dates in this signature file conform to ISO 8601. ;-)

Online bmancanfly

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #80 on: July 15, 2013, 07:41:41 PM »
I'm curious on how you propose we structure the forums, to address the "betweeners" that are not LTS or newly infected.  The LTS forum was created at a time when there was great friction between those of us infected decades ago and newer members of the forum.  We didn't have an LTS forum and we often found that subjects involving either LTS or newly infected issues were creating friction in the Living With HIV forum. 

We asked the owners of this forum to create the LTS and as a forum we developed the criteria for posters in the newly created LTS forum.  For me, the reason we needed to do this, is because unless you lived with both the virus and the horror it created, your experience with HIV will never fully relate to the experience of LTS.  It's not an issue of one experience being more genuine than another, it's about two versions of living with HIV and those experiences that can never meet.

We started the LTS forum, because we are living a life that is unique, as we have lived with HIV for decades and that longevity has come with a heavy price.  Another reason we created the LTS forum was our issues are not relevant to those more recently infected and that's a wonderful thing, but it does not change our reality.  As we enter our 50s and beyond, we are experiencing issues that generally affect people much older than us.  Nobody knows what prolonged effects the meds may cause, because we are the first to survive so long on meds.  What we do know, is our experience with HIV will forever be unique.  Please note I did not say "better", just unique.  In a way, it's not just about how we lived, it's about "when" we lived.

Forum history has also shown, that it's not healthy to scare the newly infected with tales from LTS or folks who have a few years under their belt and that's why the I Just Tested forum was created.  My point is we already have sub-divisions in the forums and the LTS forum will forever be unique, because there are no more folks who were diagnosed Pre-Haart.  We are living a life that hopefully no others will ever experience in regards to long term infection, prior to effective treatments and the consequences when no treatments were available.

Where I'm missing a distinction is that folks who are poz, even for a decade or more, have much more in common with the more recently infected, than they ever will with LTS and I don't understand what kind of new forum division you are proposing?  I believe I understand what you are saying, I'm just unsure on how you feel the forum could meet that need.

Joe

Thank you for this thoughtful reply.  I really means a lot to me.

I don't think we should really change much as far as the structure of the forums.  I think the LTS forum should continue to exist just as it is,  but should be called the Pre Haart Survivors forums.  Which is actually what it really is and always has been anyway.  We should open up the terminology within this website of Long Term Survivor to anyone who has had the virus for a long term  (10 years seems like a nice round number).  Before drugs most people were dead within 10 years so if you have survived beyond the natural,  untreated,  life expectancy for hiv then you are a long term survivor.

Therefore,  the current LTS'ers would be both  Pre Haart Survivors  and LTS
« Last Edit: July 15, 2013, 07:46:41 PM by bmancanfly »
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Offline mitch777

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #81 on: July 15, 2013, 07:56:28 PM »
Thank you for this thoughtful reply.  I really means a lot to me.

I don't think we should really change much as far as the structure of the forums.  I think the LTS forum should continue to exist just as it is,  but should be called the Pre Haart Survivors forums.  Which is actually what it really is and always has been anyway.  We should open up the terminology within this website of Long Term Survivor to anyone who has had the virus for a long term  (10 years seems like a nice round number).  Before drugs most people were dead within 10 years so if you have survived beyond the natural,  untreated,  life expectancy for hiv then you are a long term survivor.

Therefore,  the current LTS'ers would be both  Pre Haart Survivors  and LTS
hmmm.....
PHS as opposed to LTS?
Doesn't bother me.
Now to get the media and general public to get all of this might be problematic. :)
31 years hiv+ (oct. 2013) with a curtsy.

Online bmancanfly

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #82 on: July 15, 2013, 08:02:47 PM »
hmmm.....
PHS as opposed to LTS?
Doesn't bother me.
Now to get the media and general public to get all of this might be problematic. :)

Not to split hairs but PHS in addition to LTS.    ;)
"The trouble with the world is that the stupid are cocksure and the intelligent are full of doubt."

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Offline oksikoko

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #83 on: July 15, 2013, 08:10:48 PM »
hmmm.....
PHS as opposed to LTS?
Doesn't bother me.
Now to get the media and general public to get all of this might be problematic. :)

I think the general public thinks "long-term survivor" means pretty much what bmancanfly said. :)

Of course, the general public has never heard of Atripla and maybe possibly remember AZT, but probably not. They don't think about HIV all that much. ;)
Code: [Select]
2013-10-03:                ☣ VL (=) undetectable ☣ CD4 (+) 1105
2013-05-23:                ☣ VL (=) undetectable ☣ CD4 (-) 945
2013-02-25:                ☣ VL (-) undetectable ☣ CD4 (+) 1123
2012-12-16: Enter Stribild
2012-11-20: HIV+           ☣ VL (→) 132,683      ☣ CD4 (→) 920
2012-04-01: HIV-
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Offline mitch777

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #84 on: July 15, 2013, 08:34:05 PM »
This would ring more true if there were a forum section where LTSers are forbidden the way "newly" (ten years is still new?) infected people are from the LTS forum. I don't propose such a forum or care that you have a private forum, mind you, even though it could be argued that the newly infected need a place to talk freely without being preached at by well meaning elders.

The LTS experience is definitely seen as more genuine here, not through malice, just a sort of reality distortion field, the way the baby boomers somehow think they're the greatest generation - they can't see past themselves to see the value of every generation. It's also shell shock kind of thing. You hear Vietnam veterans and those from World War II have those sorts of discussions. No one really wins, but lots of people get their feelings hurt and many others just tune out of the conversation.

Please remember that while most of us have never had the experience you had, we all appreciate that experience. It goes without saying. But the experience that we're having is also unique. You've never had it and neither have we. HIV is hanging, people's perceptions about us are changing, the perception of how much help and compassion we need is changing and it's a new world that we'll all have to learn to live in. I doubt any of your friends told you you deserved HIV. Just your enemies said that. We live in a world now where it seems increasingly common for people's friends/family to have little to no compassion because "we should have known better." Money for programs is drying up not just because of the apathy of the newly infected, though that's a handy scapegoat. It's also drying up because HIV is being normalized into something akin to diabetes. Agree with that or not, it's happening. And maybe it's good. I have no idea. But HIV still creates special needs in my opinion, and we're in a world where others share that opinion less and less. Not more and more as in the world you experienced when newly positive. That's how thesse great programs were built because compassion was growing then. It's no longer. Maybe you did experience some of these things. I don't know. But it's not part of the narrative I've heard, and seems to be a very disturbing new development.

All this talk of not knowing what drugs will do to you since there's no precedent? That's true of any novel drug for any ailment. Can't wait to find out what integrase inhibitors and pharmacokinetic enhancers do to a guy my age, and there's no one to ask because no one knows. Plus ça change, it's always a new world out there. Mixing cobicistat with aripiprazole and risperdol seems like a bad idea to me, but we're "experimenting" for the good of future patients, so at least I know someone will benefit from my uncertainty.

So will ours. I didn't experience yours, and you're definitely not experiencing mine.
While I appreciate and agree with most of what you say here, the single word "preach" stands out.
Yes, it happens but when you categorize all of us LST (or PHS) as "preachers" it stings.
I would prefer it looked at that we may have some input that is valid.
(keeping in mind this is a 2 way street)

Funny thing just happened a minute ago.
Our ill pooch went for a walk around the block with his other daddy and met up with the neighbors cat along the way. It's always been Schnauzer vs. Cat. The cat could tell Oliver wasn't himself. (really bad eyesight, etc) Anyway, Oliver got 2" from the cat's nose before he realized who was there. The cat seemed content and thought, hmm... maybe he's not such a bad guy. :) He then started to bark in the cat's face. :(
Cat darted away.

I guess we could look at this as an example of trying to have faith, trust and understanding that didn't quite work out the first time. Try try again. Two different points of view that really aren't a real threat in the scheme of things.

May seem like I'm preaching but it was just an observation that I thought was worth sharing. :)
31 years hiv+ (oct. 2013) with a curtsy.

Offline mitch777

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #85 on: July 15, 2013, 08:34:51 PM »
I think the general public thinks "long-term survivor" means pretty much what bmancanfly said. :)

Of course, the general public has never heard of Atripla and maybe possibly remember AZT, but probably not. They don't think about HIV all that much. ;)
Agreed. Now to get the docs and scientists into the mix. :)
Not to split hairs but PHS in addition to LTS.    ;)
I said no problem. :)
« Last Edit: July 15, 2013, 08:37:38 PM by mitch777 »
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Offline oksikoko

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #86 on: July 15, 2013, 08:42:28 PM »
While I appreciate and agree with most of what you say here, the single word "preach" stands out.
Yes, it happens but when you categorize all of us LST (or PHS) as "preachers" it stings.
I would prefer it looked at that we may have some input that is valid.
(keeping in mind this is a 2 way street)

Yeah, what I mean is, sometimes people just want to talk and don't want an answer. Or they want to find their own answer.

I've been told in this thread not to take everything as if it's written about or to me. ;) Obviously, no two people are alike, but yeah "preach" is a loaded word I didn't intend to aim at anyone. Anyway, if you look back at my earliest threads, I was always a big proponent of learning from people who've "been there". So I'm sort of devil's advocate here, since I still get the feeling people are 'missing' from this conversation. But I hallucinate on a regular basis, so really you gotta give me some leeway on hearing or not hearing voices. ;)
Code: [Select]
2013-10-03:                ☣ VL (=) undetectable ☣ CD4 (+) 1105
2013-05-23:                ☣ VL (=) undetectable ☣ CD4 (-) 945
2013-02-25:                ☣ VL (-) undetectable ☣ CD4 (+) 1123
2012-12-16: Enter Stribild
2012-11-20: HIV+           ☣ VL (→) 132,683      ☣ CD4 (→) 920
2012-04-01: HIV-
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Offline mitch777

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #87 on: July 15, 2013, 08:49:29 PM »
Yeah, what I mean is, sometimes people just want to talk and don't want an answer. Or they want to find their own answer.

I've been told in this thread not to take everything as if it's written about or to me. ;) Obviously, no two people are alike, but yeah "preach" is a loaded word I didn't intend to aim at anyone. Anyway, if you look back at my earliest threads, I was always a big proponent of learning from people who've "been there". So I'm sort of devil's advocate here, since I still get the feeling people are 'missing' from this conversation. But I hallucinate on a regular basis, so really you gotta give me some leeway on hearing or not hearing voices. ;)
LOL! I just ask for the same which I believe you do. :)
Thanks.
31 years hiv+ (oct. 2013) with a curtsy.

Offline Joe K

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #88 on: July 15, 2013, 10:39:43 PM »
Thank you for this thoughtful reply.  I really means a lot to me.

I don't think we should really change much as far as the structure of the forums.  I think the LTS forum should continue to exist just as it is,  but should be called the Pre Haart Survivors forums.  Which is actually what it really is and always has been anyway.  We should open up the terminology within this website of Long Term Survivor to anyone who has had the virus for a long term  (10 years seems like a nice round number).  Before drugs most people were dead within 10 years so if you have survived beyond the natural,  untreated,  life expectancy for hiv then you are a long term survivor.

Therefore,  the current LTS'ers would be both  Pre Haart Survivors  and LTS

I'm not sure that I was clear in what I am trying to say.  My position is that the LTS forum is for a unique group of pozzies, with special needs, that most likely will not affect folks infected post-Haart.  I would rather see the addition of a Post-Haart forum, because your issues will be very different from those of LTS.  It's why we asked for the separate forum, as our needs and history is something that only other LTS can understand.  We are a group that will never increase, only decrease in numbers, while experiencing things most pozzies will never experience.

We as LTS are special because of our placement in the history of HIV, but as many mention, the face of HIV has changed dramatically, and I would support expansion of forum categories, if folks thought it would meet a real need.  I'll also remind some of you that the issues you face, are essentially no different that the challenges we faced in the beginning, with a major exception being the availability of drugs to fight the disease.

Maybe the best way to explain how I see LTS in relation to the rest of the community, is that I became poz when we didn't have to worry about drug funding, because there were no drugs to treat HIV.  Our reality did not involve applying to a program to receive our drugs, instead it involved prodding the government and drug companies to give us anything to fight the disease.

From my perspective, I would respectfully submit that you do not dilute the LTS forum, by inviting pozzies who do not share our experience and history.  We should expand what we have to meet new needs, rather than weakening a much needed forum.  Depending upon where we are, in our journey, our needs will always vary and the beauty of this forum, is we can always change as needs dictate.

Joe

Offline bocker3

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #89 on: July 15, 2013, 10:58:24 PM »
We as LTS are special because of our placement in the history of HIV, but as many mention, the face of HIV has changed dramatically, and I would support expansion of forum categories, if folks thought it would meet a real need.  I'll also remind some of you that the issues you face, are essentially no different that the challenges we faced in the beginning, with a major exception being the availability of drugs to fight the disease.

Joe,

I agree with everything that you have written in this thread -- you are, as usual, spot on with your thoughts. 
However, I think the part that I have bolded and underlined is an example of something that has been sitting in my head, but not quite coming clear.  One could take this phrasing to say that the newer folks can't share our experience (which, I agree, we can not.....) but that the LTS can share ours.  I'm not sure that is what you meant, but it is how I am reading it.  I sort of get that line of reasoning, but there is a big difference -- NOT COMPARABLE TO WHAT MAKES YOURS UNIQUE TO LTS, but still -- we were "expected" to know better, we were stupid to get infected, it was unnecessary, we deserved what we got, etc, etc.  Not to mention, that there IS a mindset that HIV is no big deal today (both within and outside the poz community) that may well set many of us up for a shock down the road.
I don't feel I'm being overly eloquent here and I have no intention of trying to demean or diminish anyone's experience, but just like I can't truly understand the journey of the LTS, even though I lived through it and lost friends and family -- I was negative, so I didn't experience it.  Neither can you fully understand what it is like to become positive today, even though you probably know many who have.

At the end, our individual experiences are each our own -- as are our more "collective experiences".  I find it incredibly helpful to hear both in these forums, as we all have much to support and teach each other.

I think this has been a great thread -- I've seen so many of these go a different way, but I find folks being respectful and thoughtful here. 

Thanks,
Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline Joe K

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #90 on: July 15, 2013, 11:29:11 PM »
Joe,

I agree with everything that you have written in this thread -- you are, as usual, spot on with your thoughts. 
However, I think the part that I have bolded and underlined is an example of something that has been sitting in my head, but not quite coming clear.  One could take this phrasing to say that the newer folks can't share our experience (which, I agree, we can not.....) but that the LTS can share ours.  I'm not sure that is what you meant, but it is how I am reading it.  I sort of get that line of reasoning, but there is a big difference -- NOT COMPARABLE TO WHAT MAKES YOURS UNIQUE TO LTS, but still -- we were "expected" to know better, we were stupid to get infected, it was unnecessary, we deserved what we got, etc, etc.  Not to mention, that there IS a mindset that HIV is no big deal today (both within and outside the poz community) that may well set many of us up for a shock down the road.
I don't feel I'm being overly eloquent here and I have no intention of trying to demean or diminish anyone's experience, but just like I can't truly understand the journey of the LTS, even though I lived through it and lost friends and family -- I was negative, so I didn't experience it.  Neither can you fully understand what it is like to become positive today, even though you probably know many who have.

At the end, our individual experiences are each our own -- as are our more "collective experiences".  I find it incredibly helpful to hear both in these forums, as we all have much to support and teach each other.

I think this has been a great thread -- I've seen so many of these go a different way, but I find folks being respectful and thoughtful here. 

Thanks,
Mike

Hey Mike,

I agree that non-LTS will never experience what LTS experienced and there is no way LTS could experience what post-Haart folks are experiencing, hence the need for separate forums.  While all of the poz community faces some of the same challenges, such as adequate funding and services, most post-Haart infected folks have not been damaged to the extent that LTS have.  What I am advocating for is to expand the forums to reflect the expanding group of post-Haart pozzies, who are now entering their second decade of being infected.

I have never criticized anyone for becoming infected with HIV and I never will.  I will never know what it's like to become poz and be able to start drugs immediately and I don't profess to understand fully what's it like to become poz in this brave new world.  What I do know, are my needs and those of other LTS.  We chose to create separate forums, because our issues are so dramatically different in many aspects, however we still share a great deal of issues and concerns with all pozzies.

It seems to me that the issue is how do we meet the needs of those infected post-Haart who are entering decades of being infected?  I suspect many of their issues will be different from LTS and the newly infected and that's why I propose expanding the forum categories, to meet whatever needs of this community.

While I generally support inclusion, sometimes we need special sections for groups who have unique needs and experiences.  I don't want this to become an "us" vs. "them" type of issue, because it never was.  What I see is the expansion of HIV history, with new folks being added who have unique needs and issues as they age with HIV, post-Haart.  For me, it's an issue of recognizing the multi-faceted needs of this forum and adapting ourselves to meet as many of those needs as possible.

Joe

Offline wolfter

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #91 on: July 15, 2013, 11:34:53 PM »
Perhaps some of the LTS (post HAART) could band together and demand change.  Stand up and be heard.   ;)  I also think it might be a needed addition, but I think many of my pre HAART contemporaries are tiring of the fight.  Kinda puts me in mind of someone here who mentioned that it's time for others to take over the reigns.

I've enjoyed and am pleased with the civility of this thread.

Wolfie
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Offline tednlou2

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #92 on: July 16, 2013, 12:25:54 AM »
I was looking at some videos of protestors, demanding funding for HIV research and ADAP.  One of these was the one where President Obama was interrupted.  I saw many 20-30 year-olds.  There was one where they all got naked.  They were 20-30.  I have poz friends on Facebook, who post their photos of doing outreach and protesting.  They are 20-30.  It caused me to rethink the thinking that younger people are not involved.  I'm not sure we can say who is involved and in what numbers.  I can't with my anecdotal story of some videos I watched. 

As I've been thinking about this, I thought about the ages of the people doing HIV work here.  The HIV testing vans are always staffed by people who look 30.  At the ASO, which handles ADAP, the workers and volunteers look about 25-30.  The nurses, med assistants, and clerical staff at the HIV clinic look 25-30, for the most part.  So, I think the younger generations are taking the reigns.  I thought about a protest here at our capital.  I remember seeing many college-aged folks. 


Offline mitch777

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #93 on: July 16, 2013, 07:50:54 AM »
As I have had more time to think about all of this I'm not so sure anymore.
Would there be restrictions placed as to who could participate in a new section of the forum?
I hear now and then from some straight members that they don't seem to fit in.
New forum section?
How about other subgroups?
Just seems that if we continue along this path more divisions occur.

What about if in 5 or 10 years the meds become a once a month pill with no harsh side effects. Time for yet another section/division?

There will always continue to be unique subgroup experiences.
Not sure if creating new separate sections for each new "group" along the way is the answer. Easy for me you might say. After all, we LTS (and Women) already have our section.

While I know from listening to those infected post HART that comments like "you were stupid to get infected", etc. exist, I don't think those comments will ever stop. Some people simply lack empathy. Some people like to pass judgment. And honestly I really don't hear many comments like that on the forum. I think this attitude is FAR more prevalent in society as a whole than from LTS.
31 years hiv+ (oct. 2013) with a curtsy.

Offline bocker3

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #94 on: July 16, 2013, 07:56:20 AM »
Hey Mike,

I agree that non-LTS will never experience what LTS experienced and there is no way LTS could experience what post-Haart folks are experiencing, hence the need for separate forums.  While all of the poz community faces some of the same challenges, such as adequate funding and services, most post-Haart infected folks have not been damaged to the extent that LTS have.  What I am advocating for is to expand the forums to reflect the expanding group of post-Haart pozzies, who are now entering their second decade of being infected.

I have never criticized anyone for becoming infected with HIV and I never will.  I will never know what it's like to become poz and be able to start drugs immediately and I don't profess to understand fully what's it like to become poz in this brave new world.  What I do know, are my needs and those of other LTS.  We chose to create separate forums, because our issues are so dramatically different in many aspects, however we still share a great deal of issues and concerns with all pozzies.

It seems to me that the issue is how do we meet the needs of those infected post-Haart who are entering decades of being infected?  I suspect many of their issues will be different from LTS and the newly infected and that's why I propose expanding the forum categories, to meet whatever needs of this community.

While I generally support inclusion, sometimes we need special sections for groups who have unique needs and experiences.  I don't want this to become an "us" vs. "them" type of issue, because it never was.  What I see is the expansion of HIV history, with new folks being added who have unique needs and issues as they age with HIV, post-Haart.  For me, it's an issue of recognizing the multi-faceted needs of this forum and adapting ourselves to meet as many of those needs as possible.

Joe

Hey Joe,

To be clear -- I understand (and support) the need for an LTS forum.  I hope I didn't give the impression otherwise.  So long as we have the ability to support each other, there is no "us vs. them" with having a separate space (or two or three.......) in my mind.  In fact, just like a marriage -- some "alone time" with friends who share different things is a great way to keep a couple strong.
My last post was just, really, a light-bulb finally going off that enabled me to put a thought down that had been hiding just beyond reach for a while.

Hugs,
Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline mitch777

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #95 on: July 16, 2013, 08:16:04 AM »
Not sure if this idea would help. (as it is already in the restriction rules)
Maybe changing the subtext under the "Long-Term Survivors" section to read "A forum for Pre-HAART HIV survivors" would clarify at a glance the specific reason for it's existence.
Not much of a solution. :P
31 years hiv+ (oct. 2013) with a curtsy.

Online bmancanfly

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #96 on: July 16, 2013, 09:05:00 AM »
From my perspective, I would respectfully submit that you do not dilute the LTS forum, by inviting pozzies who do not share our experience and history.  We should expand what we have to meet new needs, rather than weakening a much needed forum.   Depending upon where we are, in our journey, our needs will always vary and the beauty of this forum, is we can always change as needs dictate.

Joe

Joe I think you're misunderstanding what I was suggesting.  I was not suggesting opening up the LTS forum to anyone else.   The criteria for participating in that forum would remain exactly the same as it is now.  The only difference would be that it would be referred to as the Pre Haart Survivors Forum,  which is what it has always been anyway.  The need for that separate space is in no way disputed by me. 

Doing that opens up the terminology of Long Term Survivor to all who have had HIV for a long term (my suggestion was 10 years).   Restricting that use of phrase from people who have had HIV for a long term is not unlike refusing to let gay people call their marriages "marriage".   I really don't see a need for another forum sub group.  The way I am suggesting is a way to bridge some of the differences between us while still protecting the separateness and uniqueness of the current Pre Haart Survivor experience
 
This website paradoxically categorizes the words "long"  and "term"  as only occurring before 1995.  It's a bit of a nonsensical and at times confusing definition.  And doesn't fully respect the experience of pozzies who have been living with this for a "long term".

I realize it's a bit of shift in thinking for some but no one is giving anything up and I think it is a reasonable request. 

 
« Last Edit: July 16, 2013, 09:08:39 AM by bmancanfly »
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Offline jkinatl2

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #97 on: July 16, 2013, 09:43:15 AM »
I actually like that idea a lot. Bman is accurate in that the "long term"  simply HAS to mean more than  simply "pre-Haart" because, as he pointed out, we have a whole other wave of LTS folks now.

Some people fought the first generation of PIs, others fought an unsympathetic medical system when dealing with Sustiva depression/psychosis. Those people bear scars as well, scars that the current crop of newly infected people might never (hopefully) have to endure.

My question is, do we need another LTS forum for that generation? Or will clarifying what  the current LTS forum means be enough?

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Offline mitch777

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #98 on: July 16, 2013, 10:10:13 AM »
I'm just wondering what the definition of LTS is?
I know how it is defined here in the forum but is there a definitive answer to the question?
I can certainly understand that someone being diagnosed in 1997 would feel like a LTS. Heck, that was 16 years ago.
In 10 years from now, after 26 years of infection, he/she still wouldn't be considered a LTS as it's currently defined.
I think my brain was going off into left field earlier here. :o Sounds like this really just boils down to a need to redefine a LTS.
I can be a bit slow sometimes. :P
31 years hiv+ (oct. 2013) with a curtsy.

Offline jkinatl2

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #99 on: July 16, 2013, 10:19:48 AM »
Well in all fairness, when these forums were invented, I imagine no one thought we would need to grapple with that issue. Which is a success story in and of itself.

I am no fan of breaking the forums down further, but I totally understand the pushback regarding the term LTS. Clarification might be just the answer - and it would also, I think, avoid embarrassing and potentially off-putting situations where people are posting in the "wrong" forum.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

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