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Author Topic: Soooo angry I could explode!!!!! Arrrgh.  (Read 9939 times)

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Offline auspoz

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Soooo angry I could explode!!!!! Arrrgh.
« on: July 09, 2013, 08:49:03 AM »
So, I'm watching a doco about HIV & that group called "bug-chasers" and some fucking old queen says "to test positive in 2000's is just stupidity".

What a fuck wit!!!! I NEVER barebacked once. Knowingly. And who the hell produced this.

Well bite me, bitch. This bastard got no time for that.

Is this a common sentiment amongst teh gays? If it is, I renounce any remote idea of community. And fuck them fuck them fuck them.

Angry angry angry. And didn't know where else to turn to express it. :/

Sorry. auspoz.
« Last Edit: July 09, 2013, 08:52:15 AM by auspoz »

Offline auspoz

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #1 on: July 09, 2013, 08:53:29 AM »
After rant- I also wish youse all the best of health.

Offline auspoz

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #2 on: July 09, 2013, 09:32:10 AM »
Lol. 30 views and no replies. Lurkers much?

Offline Buckmark

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #3 on: July 09, 2013, 10:02:08 AM »
Lol. 30 views and no replies. Lurkers much?

Everybody lurks....  (sung to the tune of REM's "Everybody Hurts")

That said, I don't know the context in which it was said that "to test positive in the 2000s is just stupidity".  It also doesn't say very much.  I suppose that becoming infected with HIV is often a result of a "stupid" decision (unprotected sex, IV drug use).  But who hasn't made a stupid decision in their life, of one kind or another?  Maybe this person hasn't come to terms with their own HIV status, or how they became infected with HIV.  Bitter.

The same human foibles, mistakes and temptations that led to HIV infections in the 1980s and 1990s are still present today.  That doesn't mean we shouldn't stop trying to reduce new infections, but that new / different / additional approaches to controlling HIV are needed.
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline Mrmojorisin

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #4 on: July 09, 2013, 10:08:41 AM »
You waited a whole 43 minutes for reply's before you complained about no replies...just so you know there are not a lot of people who sit on here all day just waiting to reply to posts.. I have made posts that have never gotten reply's but I didn't bet butt hurt about it....grow up
Started Meds On 5/1/2012 Norvair, Truvada, Prezista, and Bactrim

4/17/2012--CD4 83/ VL 353,000  7.0%
5/15/2012--CD4 218/ VL 4,970    14.1%
6/27/2012--CD4 146/ VL 420      6.1%
10/11/2012-CD4-223/ VL-62       9.5%
2/14/2013--CD4-215/ VL-119      13.6%
7/3/2013---CD4-256/ VL-UD       18.0%
10/18/2013 CD4-223/ VL-UD       22.2%
01/23/2014-CD4-381/VL-UD       25.3%--Dropped the Bactrim

"arrrrhhhhh ahhrrhhhhh aaaarrhhh"- Chewbacca

Offline wolfter

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #5 on: July 09, 2013, 10:14:32 AM »
Lol. 30 views and no replies. Lurkers much?

Many people read these types of post and choose to think through our responses before we further exacerbate the anger.

That being said, I'll "lightly" respond from where I believe he's "coming" from.  Since you indicate that he's an Old Queen, I'll assume he's been around since the beginning of this virus and witnessed firsthand the devastation.  It probably wasn't even a judgmental thing, as much as an astonished wonderment why people have not learned the lessons of prevention that we were not afforded.

I have a young nephew who is gay and recently moved to LA.  He has witnessed my struggles with AIDS, with me being diagnosed before he was even born.  I've pleaded, preached, taught and communicated with him every possible means to prevent/protect himself from this virus.  If he was ever to contract this virus, I obviously would love him with all my heart and support him.  But, I would obviously be disappointed and be angry that he didn't take the available steps to prevent the infection.

Wolfie
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline Joe K

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #6 on: July 09, 2013, 10:56:03 AM »
So, I'm watching a doco about HIV & that group called "bug-chasers" and some fucking old queen says "to test positive in 2000's is just stupidity".

What a fuck wit!!!! I NEVER barebacked once. Knowingly. And who the hell produced this.

Well bite me, bitch. This bastard got no time for that.

Is this a common sentiment amongst teh gays? If it is, I renounce any remote idea of community. And fuck them fuck them fuck them.

Angry angry angry. And didn't know where else to turn to express it. :/

Sorry. auspoz.

Hey Auspoz,

I'm not sure what kind of response you expect us to make, when you simply rant on a subject, without providing any perspective and use an excessive amount of expletives.  I was with you when you started your rant, but you lost me when you called someone an "old queen", or when you asked if this was a common sentiment amongst the gays and if it was, you renounce any remote idea of community... 

You are not seeking any discussion, you are simply ranting and rantings rarely make for any form of a rational discussion.

Joe

Offline oksikoko

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #7 on: July 09, 2013, 11:21:59 AM »
So, I'm watching a doco about HIV & that group called "bug-chasers" and some fucking old queen says "to test positive in 2000's is just stupidity".

Quote from recent Poz article (not the opinion of the author): "Gay men who get infected today are out of their minds. They are the failed ones, the grave disappointments, the apathetic, the careless, the irresponsible. They spit upon the memories of our courageous dead. They have no respect for our history, for our monumental tragedy. "

Link to article

Forum discussion about the article here
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 bmancanfly

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #8 on: July 09, 2013, 11:33:18 AM »
I was about to post the same link as Oksikoko above.

You have every right to be upset by such a judgmental,  and condescending comment.  Unfortunately, comments like that are all too familiar. 

But by responding in kind you lose the moral argument.

Read Mark S king's article linked above. 
"The trouble with the world is that the stupid are cocksure and the intelligent are full of doubt."

 Bertrand Russell

Offline skeebo1969

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #9 on: July 09, 2013, 02:54:59 PM »
Is this a common sentiment amongst teh gays? If it is, I renounce any remote idea of community. And fuck them fuck them fuck them.

Angry angry angry. And didn't know where else to turn to express it. :/

Sorry. auspoz.

I can understand your frustration towards the comment, but I wouldn't denounce the community based on one individual's opinion.
I despise the song Love is in the Air, you should too.

Offline tednlou2

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #10 on: July 10, 2013, 02:57:01 AM »
I think most get on their high horses, on just about any issue.  I've seen people say a drunk driver should be locked up and the keys thrown away, for killing someone.  Then, I will see them have several drinks and drive home.  The same with texting and driving.  They will proclaim how stupid and dangerous it is, but I will see them read a message while driving, or fiddle with the navigation. 

People like to get on their soap boxes, while doing the exact same things. 

Offline wolfter

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #11 on: July 10, 2013, 08:22:59 AM »
Wow, 8 responses and the OP doesn't respond.  Kettle meet pot!
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline weasel

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #12 on: July 10, 2013, 08:55:14 PM »
Wow, 8 responses and the OP doesn't respond.  Kettle meet pot!

  He is waiting to respond , As we did   ;D

       I for  one do not care for  people treating newly infected people badly !

       With  all the knowledge   it appears   HIV   will live on .....

                                                          I wish it were all a dream  ,
                                                                                                          Weasel
" Live and let Live "

Offline gavelkind

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #13 on: July 11, 2013, 03:49:33 PM »

I have a young nephew who is gay and recently moved to LA.  He has witnessed my struggles with AIDS, with me being diagnosed before he was even born.  I've pleaded, preached, taught and communicated with him every possible means to prevent/protect himself from this virus.  If he was ever to contract this virus, I obviously would love him with all my heart and support him.  But, I would obviously be disappointed and be angry that he didn't take the available steps to prevent the infection.

Wolfie

Can't help but find this part offensive (even though I know you didn't mean it that way), and in a way it points out what the original poster meant.

Even before becoming positive, I remember so many gay friends who would always make similar comments. "I don't feel sorry for anyone who is + because they could've protected themselves." "If you don't use a condom and get it, then you deserve it!" and now you with "I would obviously be disappointed and be angry that he didn't take the available steps to prevent the infection."

You'd be disappointed in him? Most people who get it aren't stupid. They know they need to protect themselves. Some people get it because they are dealing with depression and don't care despite knowing better. Some people trust their heart to the wrong person. Some people got too drunk. How about when you got it and told someone you cared about? Did they tell you they were disappointed in you or that they still cared for you?

Remember, everything before the "but" is insincere. Instead of feeling disappointment and anger, maybe you should feel sympathy instead? Sorry I'm being so harsh, but wanted to get my point across.

That's one of my fears about disclosing to my friends. I'm afraid they'll say something similar: "I still love you BUT I'm disappointed and angry at you." And imo, most neg gay people, when they think they're around only neg people, they'll make statements about how people should feel no sympathy for people with new infections.
2/13- Diagnosed
3/13- CD4,  885/39%   VL, 135,542
5/13- CD4,  867/46%   VL, 553
6/13- CD4,  720/42%   VL, 32
7/13- CD4,  1095/36%  VL, <20
10/13- CD4, 884/47%   VL, 42
1/14- CD4,  1165/48%  VL, 31
2/14- CD4,  1214/46%  VL, <20
5/14- CD4,  1715/49%  VL, <20

Offline wolfter

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #14 on: July 11, 2013, 04:37:04 PM »
What about the most important aspect of my post where I tried to explain why some of us old queens feel the way we do?

QUOTE
"That being said, I'll "lightly" respond from where I believe he's "coming" from.  Since you indicate that he's an Old Queen, I'll assume he's been around since the beginning of this virus and witnessed firsthand the devastation.  It probably wasn't even a judgmental thing, as much as an astonished wonderment why people have not learned the lessons of prevention that we were not afforded."

I absolutely have empathy for anybody who tests positive.  When I indicated that I'd be angry, well, I stand by that comment.  I never indicated I'd be angry at him, but my grief would certainly manifest as anger.  Anger that another loved will face the challenges of a life threatening virus.

No one deserves this virus and I would never blame anyone for acting human!!!! 


Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline mitch777

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #15 on: July 11, 2013, 05:42:21 PM »
Can't help but find this part offensive (even though I know you didn't mean it that way), and in a way it points out what the original poster meant.

Gav,
First I would like to say that your reaction to "this part" was because you didn't put it in context with the rest of what Wolfie said. You told him everything before the "but" was insincere.
Well I would submit that had you absorbed everything before the "but" before posting you might have tried to see it from a different perspective. A perspective that us "old poz queens" have lived.


Even before becoming positive, I remember so many gay friends who would always make similar comments. "I don't feel sorry for anyone who is + because they could've protected themselves." "If you don't use a condom and get it, then you deserve it!"
This is something to get pissed off about! :)


You'd be disappointed in him? Most people who get it aren't stupid. They know they need to protect themselves. Some people get it because they are dealing with depression and don't care despite knowing better. Some people trust their heart to the wrong person. Some people got too drunk. How about when you got it and told someone you cared about? Did they tell you they were disappointed in you or that they still cared for you?

It's only natural to feel disappointed when someone you love is human and makes a life changing mistake.
It's not a judgment. It's an emotional human feeling.
Can't help but find this part offensive (even though I know you didn't mean it that way), and in a way it points out what the original poster meant.

Even before becoming positive, I remember so many gay friends who would always make similar comments. "I don't feel sorry for anyone who is + because they could've protected themselves." "If you don't use a condom and get it, then you deserve it!" and now you with "I would obviously be disappointed and be angry that he didn't take the available steps to prevent the infection."

You'd be disappointed in him? Most people who get it aren't stupid. They know they need to protect themselves. Some people get it because they are dealing with depression and don't care despite knowing better. Some people trust their heart to the wrong person. Some people got too drunk. How about when you got it and told someone you cared about? Did they tell you they were disappointed in you or that they still cared for you?

Remember, everything before the "but" is insincere. Instead of feeling disappointment and anger, maybe you should feel sympathy instead? Sorry I'm being so harsh, but wanted to get my point across.

That's one of my fears about disclosing to my friends. I'm afraid they'll say something similar: "I still love you BUT I'm disappointed and angry at you." And imo, most neg gay people, when they think they're around only neg people, they'll make statements about how people should feel no sympathy for people with new infections.



That's one of my fears about disclosing to my friends. I'm afraid they'll say something similar: "I still love you BUT I'm disappointed and angry at you." And imo, most neg gay people, when they think they're around only neg people, they'll make statements about how people should feel no sympathy for people with new infections.
I understand your fear. Stigma and lack of empathy is still here. if your "friends" truly feel this way I would search out new friends.

That said...
There is a reason for a separate LTS part of this forum. We experienced a different world. No life saving meds (ie: death sentence at the time). There was no internet (or Poz forums). Death was everywhere around most of us. Cry me a river? Ha.
A different experience is all I'm trying to get across.
It doesn't mean that us "old poz queens" should be shoved into a nook here and that our thoughts and emotions aren't valid.

I know you weren't trying to do this but (there's that word again), it would be helpful for the newly infected to better understand what we have seen and felt.

If you really think about it, the term "old poz queen" in a certain context can be pretty judgmental.
I don't really let it bug me but it's something to think about. (especially the OP)
31 years hiv+ (oct. 2013) with a curtsy.

Offline mitch777

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #16 on: July 11, 2013, 06:29:36 PM »
So, I'm watching a doco about HIV & that group called "bug-chasers" and some fucking old queen says "to test positive in 2000's is just stupidity"

"to test positive in the 2000's is just stupidity" WAS a sh*tty comment. No empathy. Agree.
31 years hiv+ (oct. 2013) with a curtsy.

Offline jkinatl2

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #17 on: July 11, 2013, 07:20:05 PM »
"to test positive in the 2000's is just stupidity" WAS a sh*tty comment. No empathy. Agree.

Even though the person who uttered that statem,ent was incorrect, I understand the frustration when the rate of HIV infection remains stagnant, and people who saw the hardest parts of the pandemic see a yonger crowd, oblivious to the notion of pain and death associated with AIDS, treat it (and those who survived it) as irrelevant, inapplicable and of only historic value.

Many people poured their lives into safer sex efforts, and have seenthem - well not fail, exactly, but not succeed as they had hoped. And I daresay that while I am glad that stigma is being directly addressed in the media (finally), condom use will not improve upon the normalization of HIV. Between PEP, PrEP, and TAP, I suspect we will see a swing in the other direction again.

Those veterans of the darkest days (assuming, perhaps naively, that they are past) look to newly infected people with frustration. And are disappointed not necessarily in the person, but in the situation that proves they were unable, after all, to make the kind of change in the community that they had tried so hard to accomplish.

Fighting human nature will always be uphill, and ultimately impossible.

"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."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline bmancanfly

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #18 on: July 11, 2013, 07:35:07 PM »
Making comments like "to test positive in 2000's is just stupidity" is a bit sanctimonious because it implies that if the speaker had known how HIV was spread that they never would have become infected. 

That they never would have gotten drunk or high and had unprotected sex,  that they never would have lost themselves in a moment of passion,  that they never would have had a condom break,  that they never would have had a period of time in there lives where they were self destructive,  that they never would have had a moment of carelessness,  that they never would have been lied to by someone they trusted.   

It's real easy to go back and rewrite history and create a narrative where ones own behavior would have been totally virtuous.  It's also judgmental and more than a little condescending.

You know,  there are the good people who got infected before we fully understood  how HIV was spread,  the innocent victims,   and then there are those  "Gay men who get infected today are out of their minds. They are the failed ones, the grave disappointments, the apathetic, the careless, the irresponsible. They spit upon the memories of our courageous dead. They have no respect for our history, for our monumental tragedy. "

Respect and understanding is a two way street.
 
« Last Edit: July 11, 2013, 07:55:49 PM by bmancanfly »
"The trouble with the world is that the stupid are cocksure and the intelligent are full of doubt."

 Bertrand Russell

Offline mecch

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #19 on: July 11, 2013, 08:14:37 PM »
Bug Chasing is so passé. Very 2001.
Anyhoo, read in this very Forum the AIDS is now curable in Kenya. Not very "outlaw transgressive" to chase the butt flu these days.  Probably mostly a mix of mistakes, passion, ignorance, lies (the classic "old fashioned" routes of transmission that got any number of us), plus a minority which is only a few who are either optimistic about HAART and all this cure talk, or a few who just don't care all that much...
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline mitch777

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #20 on: July 11, 2013, 09:06:12 PM »
Making comments like "to test positive in 2000's is just stupidity" is a bit sanctimonious because it implies that if the speaker had known how HIV was spread that they never would have become infected. 

That they never would have gotten drunk or high and had unprotected sex,  that they never would have lost themselves in a moment of passion,  that they never would have had a condom break,  that they never would have had a period of time in there lives where they were self destructive,  that they never would have had a moment of carelessness,  that they never would have been lied to by someone they trusted.   

It's real easy to go back and rewrite history and create a narrative where ones own behavior would have been totally virtuous.  It's also judgmental and more than a little condescending.

You know,  there are the good people who got infected before we fully understood  how HIV was spread,  the innocent victims,   and then there are those  "Gay men who get infected today are out of their minds. They are the failed ones, the grave disappointments, the apathetic, the careless, the irresponsible. They spit upon the memories of our courageous dead. They have no respect for our history, for our monumental tragedy. "

Respect and understanding is a two way street.
 

Could not have been said better. Thank you.
31 years hiv+ (oct. 2013) with a curtsy.

Online leatherman

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #21 on: July 11, 2013, 10:21:05 PM »
Recently my 16yr old Ohio-niece called me up. She told me that she had some important news to tell me but was leery to tell me because she knew I was going to be mad. Her news? She was pregnant.

of course, I was mad! I was shocked, saddened, and disappointed too. She had heard the stories from me and her parents about risk behavior, unprotected sex, unplanned pregnancies, STDs and HIV/AIDS. She knew her older brother was one of those unplanned pregnancies. She knew how hard it has been for her parents to provide for her and her brother. She knew the stories about how my Randy died from AIDS. What was worse was that she had been in our house visiting the last night before my Jim died of AIDS. She KNEW just how terrible life could be if unprotected sex resulted in an HIV infection. Yet there she was, pregnant from unprotected sex.

I had to tell her the truth. I was very disappointed, upset and mad. I also had to ask whether she had been tested for HIV. Was she only just pregnant? Was the situation going to be further complicated by HIV too?? She was crying; I was crying. I nervously waited her reply. Thank goodness, the HIV test result was negative.

I then told her that what's done is done. There was no way to change what had happened and that it was time to move forward. (losing 2 partners, 10 dogs, 1 cat and living with HIV for 28 yrs has made me pretty damned practical and realistic) So what were her plans for the baby, herself and the future? She told me that she and her parents had already discussed things (they had been mad, sad, disappointed and upset too), and that she would be continuing with school and keeping her baby.

A few weeks later, she called again. Before anyone else knew, she wanted to ask me something and get my permission. She wanted to know if she could name the baby "James Randall" to honor my partners whom we had all loved so much. I felt so honored. Even though she should have known better, even though she knew I had been mad, my Ohio-niece knew how much I really loved and cared for her and that I was no longer mad; but concerned and happy about the impending birth.

well James Randall arrived 12 weeks early, and after 2 weeks is still in the hospital. He's doing really well; but he's just got more growing to do before he can go home. Mom, who is doing well herself, visits every day and posts pix to Facebook for Uncle Mikie to see (since I'm living states away now).

Pregnancies, STDs, HIV infection - all come about because of the risk behavior of unprotected sex. The initial reaction, from her parents, Uncle mikie, Grandma, some of her friends etc were all equal measures of anger, sadness, frustration, and disappointment; but the reasoned thoughtful feelings for moving forward were concern, support, determination and happiness - on the part of everyone.

as a peer counselor, or maybe just as an LTS, myself every 23-yr old male that comes into the clinic newly infected brings about feelings of anger, sadness, frustration, and disappointment in me. I have to wonder how the client missed out on education about HIV? I have to wonder where we failed to provide the education and/or tools? I have to wonder why the client took such risks. But of course I wonder these things - I've lived with HIV for so long and lost so much, I can't hardly imagine a world in which others don't understand the extreme risks. (Just like my niece seeing my dying partner - how could she have not known the risk she was taking when she had that unprotected sex??) But it's feelings of confidence, knowledge, concern, support and compassion that I present to these strangers (and friends) as I talk to them about how to move forward in their lives now that what's done is done.

I won't excuse it or say that it's right; but here 30 plus years into the HIV epidemic, anyone newly diagnosed should not be surprised to find that their loved ones/friends/strangers feel anger, sadness, disappointment etc. upon hearing the news. Don't many people upon hearing their own HIV diagnosis not feel feelings of anger, sadness, shame, disappointment, shock, etc themselves?? The why shouldn't their friends and loved ones also feel some of those exact same thoughts and feelings too?? What matters though is that those negative feelings are replaced with love, concern, and support to help the HIV positive person move forward with their lives.
leatherman (aka mIkIE)


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

Offline jkinatl2

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #22 on: July 11, 2013, 10:30:39 PM »
Leatherman, you are speaking as someone who has beem, and is trying to make a positive change. The anger, frustration, and disappointment is natural when that fails.

Perhaps people not working so hard do not have such an investment, and are more nuanced in their reactions to events that do not seem to matter to them.

Never apologise for your passions. You might have to apologise, from time to time, for the manner in which those passions come out, but they arise from a deep desire to see a better world, and not complacently accept it's disintegration.

In my opinion, the loudest mouthed "old queen" is superior to the person to whom the interest in HIV, as well as HIV, stops with them.

"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."

-Kimberly Page-Shafer, PhD, MPH

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Offline oksikoko

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #23 on: July 11, 2013, 10:54:53 PM »
Bug Chasing is so passé. Very 2001. [...] plus a minority which is only a few who are either optimistic about HAART and all this cure talk, or a few who just don't care all that much...

Not so few maybe. Most of the people I know are in the last category. ;)

For future reference, does anyone know where we demarcate between 'brave suffering souls' and 'fuckwits'? Anyone after 1996 is questionable? Or is it after Atripla? What about now that the 'cure is three months away?' Lol. They should really make a manual besides the 'so you have teh AIDS' pamphlet that I got from the health department on Day 1. It didn't mention anything about which class of pozzie I am or how I'll know which ones are the good ones.
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 wolfter

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #24 on: July 11, 2013, 11:32:12 PM »
this thread has developed into a thoughtful, historical relevant aspect of this virus.  I'll now refer to us as the LTS experienced.  :)  so much of this thread reeks of the frustration that many of us have witnessed and continue to see repeated.

Call it judgmental, but I get overwhelmed at the thought of this virus still being spread.  I believed once we identified this virus and understood the various means of transmission, that we'd see a decline in the number of infections.  I reckon that isn't the case.

I've thought about the global aspects and wondered what we can all do.  But I also realized on a local level, it was most important to espouse to those I love the realities of HIV.  I won't apologize for holding my views and I hope that I scared, taught, preached, and pleaded with my son, beloved nieces and nephews the realities.

And I also have had great conversations wish my nephew about how great a meaningful relationship can be.  His uncle Bill was more tolerant than I'd ever be able to accomplish.  We've also had great talks about sexuality and how we might be tempted by lust. 

I simply hope that I've been a great enough influence in his life that being gay isn't a shameful secret which can lead to behaviors that will influence and affect the rest of his life.   


Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline oksikoko

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #25 on: July 11, 2013, 11:41:43 PM »
I've thought about the global aspects and wondered what we can all do.  But I also realized on a local level, it was most important to espouse to those I love the realities of HIV.  I won't apologize for holding my views and I hope that I scared, taught, preached, and pleaded with my son, beloved nieces and nephews the realities.

And I also have had great conversations wish my nephew about how great a meaningful relationship can be.  His uncle Bill was more tolerant than I'd ever be able to accomplish.  We've also had great talks about sexuality and how we might be tempted by lust. 

I simply hope that I've been a great enough influence in his life that being gay isn't a shameful secret which can lead to behaviors that will influence and affect the rest of his life.   

I wish you'd been my uncle! ;)

I'm flattering myself, but I like to think that with at least one good influence somewhere along the way I might have turned out decent. I have no influence over anyone, so I just play 'bad example' and try to scare negative guys off of having sex ever again, protected or otherwise, hahaha.
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 wolfter

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #26 on: July 11, 2013, 11:47:22 PM »
I wish you'd been my uncle! ;)

I'm flattering myself, but I like to think that with at least one good influence somewhere along the way I might have turned out decent. I have no influence over anyone, so I just play 'bad example' and try to scare negative guys off of having sex ever again, protected or otherwise, hahaha.

You're selling yourself short.  You're one of the most thoughtful, intelligent people here.  I never had that influence either but I decided early on that I could pass on my limited wisdom.  :)
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline jkinatl2

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #27 on: July 11, 2013, 11:54:58 PM »
Not so few maybe. Most of the people I know are in the last category. ;)

For future reference, does anyone know where we demarcate between 'brave suffering souls' and 'fuckwits'? Anyone after 1996 is questionable? Or is it after Atripla? What about now that the 'cure is three months away?' Lol. They should really make a manual besides the 'so you have teh AIDS' pamphlet that I got from the health department on Day 1. It didn't mention anything about which class of pozzie I am or how I'll know which ones are the good ones.


You are seeking hiearchy where none exists. Rather than determine a fuckwit by the time of the infection, how about what they have done with that infection?

I imagine most "old queens" would love to step down from fighting the fight. There simply are not enough people left to care about anyone other than themselves, it seems.

I for one am grateful for anyone, regardless of their infection date, who want to make a change for the better -for themselves and the world in which they live.



 

"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."

-Kimberly Page-Shafer, PhD, MPH

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Offline oksikoko

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #28 on: July 12, 2013, 12:12:55 AM »
You are seeking hiearchy where none exists. Rather than determine a fuckwit by the time of the infection, how about what they have done with that infection?

I imagine most "old queens" would love to step down from fighting the fight. There simply are not enough people left to care about anyone other than themselves, it seems.

I for one am grateful for anyone, regardless of their infection date, who want to make a change for the better -for themselves and the world in which they live.

It exists for those of us who experience it from the underside. ;)

It's a sidetrack, but since it came up: there are many ways to make the world better, some sung, some unsung, but my 'better' may not be everyone else's. Right now, for example, the only benefit you could say I'm having on the world is facilitating access to ARVs for a couple of people who have a lot trouble with this. Am I making the world better? It depends on whether you want those people to have ARVs. Surprisingly, not everyone does. They don't even want them themselves sometimes. One thing I don't do is care when or how they got infected.

Just so it's clear,  I didn't call anyone an 'old queen'. That's someone else's quote. I'm not capable of being queen, but it's a position I hold in highest regard, and if I say it, it's a compliment.

This feels like one of those threads where a bunch of people are about to jump in and list everything they think is wrong with me, so I'll bow out now. A good evening to you all.
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 oksikoko

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #29 on: July 12, 2013, 12:18:24 AM »
You're selling yourself short.  You're one of the most thoughtful, intelligent people here.  I never had that influence either but I decided early on that I could pass on my limited wisdom.  :)

Haha, I didn't see this. Well, that's ironic. Thanks and good night. ;)
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 jkinatl2

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #30 on: July 12, 2013, 12:33:53 AM »
It exists for those of us who experience it from the underside. ;)

It's a sidetrack, but since it came up: there are many ways to make the world better, some sung, some unsung, but my 'better' may not be everyone else's. Right now, for example, the only benefit you could say I'm having on the world is facilitating access to ARVs for a couple of people who have a lot trouble with this. Am I making the world better? It depends on whether you want those people to have ARVs. Surprisingly, not everyone does. They don't even want them themselves sometimes. One thing I don't do is care when or how they got infected.

Just so it's clear,  I didn't call anyone an 'old queen'. That's someone else's quote. I'm not capable of being queen, but it's a position I hold in highest regard, and if I say it, it's a compliment.

This feels like one of those threads where a bunch of people are about to jump in and list everything they think is wrong with me, so I'll bow out now. A good evening to you all.

This really isn't about you. I am sorry you seem to find fault in every one of my attempts to converse with you. But this passive-aggressive stuff you have against me is getting old.

It's not me against you. I wasn't talking about either one of us.

I'm not going to ignore you, no matter how much you seem to want me and others to.

I am not going to "pile up" on you either. I haven't, and I won't.

"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."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Online leatherman

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #31 on: July 12, 2013, 12:40:31 AM »
the only benefit you could say I'm having on the world is facilitating access to ARVs for a couple of people who have a lot trouble with this. Am I making the world better?
yes. yes, you are making the world a better place. thank you. it only takes small acts to make an improvement.

This feels like one of those threads where a bunch of people are about to jump in and list everything they think is wrong with me, so I'll bow out now.
sometimes your self-deprecation gets on my nerves ;) ; but I haven't walked in your shoes, so I usually don't criticize. However, you're clearly seeing enemies here (in this thread) where there are none. I hope someday your self-esteem can get a boost so you're not always so down on yourself in your posts.

I for one am grateful for anyone, regardless of their infection date, who want to make a change for the better -for themselves and the world in which they live.
perhaps that's cause for part of my frustration. I don't expect all the young newly infected to jump on the same bandwagon as I'm on trying to increase education, reduce infections, and obtain greater access to meds; but surely some of them (those "optimistic about HAART and all this cure talk" that mecch mentioned) could show up to advocate for their own ADAP once in a while. I mean I hardly ever see anyone under 45 in SC advocating for basic HIV healthcare - yet those 20 and 30 yr olds just keep testing poz at the clinic.
leatherman (aka mIkIE)


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

Offline oksikoko

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #32 on: July 12, 2013, 03:36:46 AM »
However, you're clearly seeing enemies here (in this thread) where there are none.

No, I don't see enemies in this thread, which isn't my thread anyway. But you don't speak for the lurkers, some of whom I have a mutually shared distaste for. ;)

I do see a dismissal of concerns that get raised over and over about the segmenting of "our people" into the good (you) and the foolish / dumb / careless (me and people like me). I don't mind personally. I got over this a long time ago when I realized that this division was so strongly in place. I apologize for jumping in again and trying to make this an issue and will do better at not jumping into these conversations. I get tempted because I get the feeling newly poz people come here all the time and never join in because it seems like you all agree with each other, and sometimes some of us don't. But I don't see any enemies here.

As for people not advocating for themselves, I wish I (or someone) had something new to add, but as I've said, when I was in the shelters, one of which had lots of HIV+ people, there were only two categories of question/concern that were voiced with regularity, each of immediate concern. Long-term planning is a skill not everyone has. You could easily tell which type of question a person had before they asked it by how they reacted to their environment in general that day, by how "present" they seemed to be.

1) What do I do to get out of this situation and never return?

and

2) How do I entertain myself?

I'm being very simplistic, but those were loud messages. Some wanted out and would do anything. Others, probably having given up or never having had goals to begin with just wanted to pass the time. TV, sex, hanging out and gossipping, whatever. I went back and forth because both have appeal. And I don't watch TV. ;)

My point is, at least among my "community" if you can call it that, there was little thought to the issues you (and I, generally) care about, and I don't see that changing. What has to change first is that people feel they have some agency in their lives and that a better life is actually possible, which it simply isn't for everyone. Without that, why care about future sickness?

I also heard more than once, the idea that certain things are 'owed' and will be provided for propriety's sake, ie, no one's going to just watch people die of AIDS in the streets, because it's a particularly grisly way to watch an otherwise healthy person die - especially in 2013. I didn't feel anything was owed to me, and I hate that attitude, but to be honest, I felt a little protected by homelessness, because since I had nowhere to go, nowhere to hide, I knew the City wouldn't let me just "be" homeless, dirty and sick out in full view. Bloomy's NYC just doesn't look like that. Homeless AIDS clashes with steel and glass towers and sends developers the wrong message.

Even for the people who did care about these issues: when you don't have food or a home, thinking about next month's ARVs, which you don't want to take in the first place and which have delayed effects, is not really compelling.

So, this is a tough battle you're facing.
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 oksikoko

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #33 on: July 12, 2013, 03:42:23 AM »
So, this is a tough battle you're facing.

I should say "we." I was cut off of Medicaid a few weeks ago and am using ADAP again, so it's in my immediate interest that it be a succesful program. Huzzah. :)

I have a second interview for a job coming up next week, so maybe this will all be moot some day. The possibility of having a job again seems as remote to me as winning a million dollar lottery, but with larger consequences, so I don't really want to get my hopes up.
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 bmancanfly

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #34 on: July 12, 2013, 02:02:38 PM »

For future reference, does anyone know where we demarcate between 'brave suffering souls' and 'fuckwits'? Anyone after 1996 is questionable? Or is it after Atripla? What about now that the 'cure is three months away?' Lol. They should really make a manual besides the 'so you have teh AIDS' pamphlet that I got from the health department on Day 1. It didn't mention anything about which class of pozzie I am or how I'll know which ones are the good ones.

The manual is locked up in the HIV First Class Lounge,  and they're not making any more keys.   ;)

There clearly is a bifurcation in the HIV community,  how that gets bridged I don't know.  But it does seem like the two sides are talking past each other some times.  Both sides want to be heard but it seems like more listening is in order.

I'm neither young nor newly diagnosed so I can't speak to why the younger members of our community participate to a lesser degree.  But I would imagine that the attitude expressed by the comment in the OP (and attitudes like that are not that uncommon if often expressed much more diplomatically) end up driving new people away. 

Why would anyone want to be part of a community where a subset of that group treats the new members as second class citizens - never fully able to attain equal status? 

I volunteer at a local HIV organization near where I live,  and I hear that opinion expressed occasionally by the younger people who show up there.  They feel like they're being treated as outsiders.

But as an "old queen" myself,  and having lived through the dark days and having lost a partner and way too many friends,  I can understand how the older members want to see their experience appreciated and validated  and most of all not forgotten.

We all have the same disease regardless of how or when you got it.  We have far more in common then that which separates us.

« Last Edit: July 12, 2013, 02:06:04 PM by bmancanfly »
"The trouble with the world is that the stupid are cocksure and the intelligent are full of doubt."

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Offline tednlou2

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #35 on: July 13, 2013, 02:25:03 AM »
I'm confused about what the debate is, with the "good ones" and all that.  What is this?

Offline mitch777

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #36 on: July 13, 2013, 07:59:06 AM »
I'm confused about what the debate is, with the "good ones" and all that.  What is this?
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. :)
31 years hiv+ (oct. 2013) with a curtsy.

Online leatherman

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #37 on: July 13, 2013, 11:25:02 AM »
Even for the people who did care about these issues: when you don't have food or a home, thinking about next month's ARVs, which you don't want to take in the first place and which have delayed effects, is not really compelling.
having nearly been homeless myself too many times, having been hungry for days, having to wait for the next med to come along or to get access to meds at all, I empathsize with all these issues and would never expect people in those situations to do more than simply try to improve the issues in their own lives.

however with the "miracle" drugs of atripla, complera, and stribild, many more HIV positive people are able to remain on their jobs and continue with their lives instead of ending up homeless or on disabililty. (ADAP pays for many more people's medications who HAVE jobs than who don't have jobs, as medicaid and/or medicare pays for meds for the disabled, disenfranchised, or people living in poverty)

It's the people with jobs, the people whose lives have barely been affected by being infected that I see and wonder why they aren't more involved in keeping services (like ADAP) going. Surely having ADAP pay for their monthly insurance premium or provide monthly meds is worth taking a half a day off to go with a group to speak to legislators - especially in the Southern red states where Legislatures try to destroy these kinds of services each year when the budget decisions come along.

Why more people didn't speak out in NC and SC to garner Medicaid Expansion, that unlike ADAP would have covered the working poor and given them access to not just meds but actual health care services, is a mystery to me; but that lack of advocacy support is exactly why NC and SC did NOT accept Medicaid Expansion. And now the fight continues for another year until the next budget and I have to wonder if any of those more newly diagnosed people are going to bother to try to advocate for the services that do pay for their meds or for the programs that will provide them even more healthcare.

I know back in the day when a bunch of us LTSs were just young, newly diagnosed people we were out on the front lines advocating for our healthcare, so what I would hope to see from people today is no different than what happened in the past. HIV is still the same terminal disease it's always been, just the meds have changed, so it seems the positive people should still be engaged in getting and keeping services as they were in the past. I guess the immediacy of watching your friends around you die from AIDS, rather than not seeing the few who don't adhere or are diagnosed too late and die from AIDS today, must make a lot of difference spurring people on.

leatherman (aka mIkIE)


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

Offline oksikoko

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #38 on: July 13, 2013, 03:09:44 PM »
I know back in the day when a bunch of us LTSs were just young, newly diagnosed people we were out on the front lines advocating for our healthcare, so what I would hope to see from people today is no different than what happened in the past. HIV is still the same terminal disease it's always been, just the meds have changed, so it seems the positive people should still be engaged in getting and keeping services as they were in the past. I guess the immediacy of watching your friends around you die from AIDS, rather than not seeing the few who don't adhere or are diagnosed too late and die from AIDS today, must make a lot of difference spurring people on.

I think you're extrapolating your experience too much and using the fact that you saw no young people at those rallies to mean that young people don't care. I'm not a young person, but I don't have such small faith in them. No one does rallies anymore, not for any cause. They do other things like mailing campaigns and online this and that. The "big marriage rally" here at Union Sq. that got lots of press one afternoon was about 1,000 people. In NYC. The capital of queer people. And they called it massive.

But I can't address anything you're talking about anymore, because I don't know any of the people you're referring to. All of the people I know are suffering considerably from various social ailments and not only are not able to attend these rallies but would not be welcomed if they were. I have enough trouble getting the clinic to not treat them like shit.

I've been working with a guy for three months to get him adherent, and he has been mostly. Someone here even helped me show him that strangers cared enough to get him on drugs before I could get the medical stuff worked out. And yesterday he tells me he can't back to that doctor because they make him feel like shit because of track marks. I know they can't praise him for that, but I feel like they want to make him uncomfortable and go somewhere else. I know they give me different reactions when I call as myself and when I call as him (he won't call for himself to make the appointments, but he'll go if they're made, most of the time). Where should he go? But he's not gonna stop shooting up overnight, and he needs health care now. I need to convince him of that again because I feel like I'm losing here.

Back on topic:
I really don't like the way watching people die is something LTSers have claimed as their own. Most of us were here, whether we were positive at the time or not. It doesn't belong solely to you. But I'll be told I'm disrespectful for saying this. I suppose I should just ignore all my dead friends in the name of granting you bragging rights over having suffered the most. What a marvelous prize to win.
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 oksikoko

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #39 on: July 13, 2013, 03:16:49 PM »
5 seconds after posting, I read the Goodreads quote of the day "The greatest threat to freedom is the absence of criticism. Wole Soyinka"

Haha. I hope you don't mistake criticism for some kind of rage-filled rant. There's no nuance here online, but I've only been angry once or twice, and that was months ago when someone told me I was spitting on the dead or something like that, which is the worst thing I've ever been accused of and quite different from anything anyone has said here.This is a pretty friendly thread, but some people are so used to valuing comfortable silence over constructive disagreement that small disagreements seems like raging battles to them.

I hope you're in the same spirit I am.
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 jkinatl2

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #40 on: July 13, 2013, 03:38:32 PM »
Quote
I really don't like the way watching people die is something LTSers have claimed as their own.

Broad brush much?

What you perceive to be "bragging rights" is often a desperate cry for help. Many of the LTS folks you seem to be keen on crttiquing are not trying to show superiority - they are trying to get someone to take over. They are worn out. They are tired. They are suffering.

ASO's are reverting to professional non-profit leadership, staffed by people who might or might not, in any given calendar year, have any real interest in the community they serve. Ryan White allocation boards, staffed by community representatives, are drying up - and with them, any say the community had in the allocation of these important funds.

Apathy is the enemy here, and it is literally killing people as ADAP waiting lists continue to grow, resources continue to shrink, donations dry up, citizen oversight boards disappear when people quit or die and are not replaced.

And yet people in the US who have no insurance, or absolutely not enough insurance, continue to get infected and wonder where these lifesaving meds are going to come from.

I am glad you are trying to help the people around you. I wish you would be less critical of others who are doing the same, and try to see things from their perspective instead of assigning them motive and then judging them for it - which speaks to the core of the (vanished) OP's rant.

You seem to have decided what all LTS'rs think, and are responding/attacking in turn - and then at the same time trying to make a plea for unity and understanding.  I certainly don't think all "young" people or all newly diagnosed/infected people think unilaterally.

All I know is that, here in Atlanta (and from what I hear, in Arizona, Sounth Carolina, New York, and many other places) HIV/AIDS resources are shuttering because no one is taking the time or energy to physically be part of them.

We have more healthy people living with HIV now than ever. Yet when you look at the boards of citizen Ryan White committees, of ASOs, of HIV-related outreach, housing, food distribution and service programs, you do not see nearly enough of those people. You see faces mutilated by lipo, legs that can barely stand with a cane, thousand-yeard stares of people who have seen too much horror to even function for the most part. Fumes.

My losses do not make me superior to you. My losses have crushed me. They have darkened my soul and diminished my capacities. They have rendered me an outcast, and left me in the fringes of society.

I know of few people here who want to use their grief, their loss as a badge of honor. Most of us don't have that desire, nor the emotional luxury to do so.

Empathy is, ultimately, a two way street. Trying to understand things from a different perspective is almost always beneficial to the conversation as a whole.

That empathy is what I find missing in this discussion. All the LTS folks who have posted have tried to explain their frustration, anger, sadness, and exhaustion. But these words seem to fall on a lot of deaf ears.

"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."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline oksikoko

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #41 on: July 13, 2013, 03:42:52 PM »
No deaf ears. Read my previous post. You continue to ignore the things I say which don't agree with what you already think.

Ultimately, it doesn't matter, but I like most people come here seeking some kind of mutual understanding. I wish I had found more of it, and I wish I could give more of it.
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 jkinatl2

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #42 on: July 13, 2013, 03:48:56 PM »
No deaf ears. Read my previous post. You continue to ignore the things I say which don't agree with what you already think.

Ultimately, it doesn't matter, but I like most people come here seeking some kind of mutual understanding. I wish I had found more of it, and I wish I could give more of it.

I read your posts carefully, and am trying to understsand your perspective.

"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."

-Kimberly Page-Shafer, PhD, MPH

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Offline oksikoko

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #43 on: July 13, 2013, 03:58:38 PM »
Broad brush much?

Yes. The same that we all use when speaking in generalizations which I never said I wasn't. I'm not stupid enough to think all LTSers are the same, and I would hop you're not stupid enough to think I would be that stupid.

What you perceive to be "bragging rights" is often a desperate cry for help. Many of the LTS folks you seem to be keen on crttiquing are not trying to show superiority - they are trying to get someone to take over. They are worn out. They are tired. They are suffering.

That's a two way street too. Why do you think I'm here? Because I feel great? Because I'm mentally stable? Because I have so many social outlets that I thought adding this one, as hard as it seems to be to talk to people here, would be good for kicks?

ASO's are reverting to professional non-profit leadership, staffed by people who might or might not, in any given calendar year, have any real interest in the community they serve. Ryan White allocation boards, staffed by community representatives, are drying up - and with them, any say the community had in the allocation of these important funds.

Nonprofit everything is in trouble. The reason I'm unemployed is because the nonprofit I worked for shuttered its doors. No argument here.

Apathy is the enemy here, and it is literally killing people as ADAP waiting lists continue to grow, resources continue to shrink, donations dry up, citizen oversight boards disappear when people quit or die and are not replaced.

No argument.

And yet people in the US who have no insurance, or absolutely not enough insurance, continue to get infected and wonder where these lifesaving meds are going to come from.

Some of us use it as suicide by virus, then that doesn't quite go as planned. But I do apologize for getting infected and placing more burden on the system. This comment sounds like it's asking for apology for some infraction, so.

I am glad you are trying to help the people around you. I wish you would be less critical of others who are doing the same, and try to see things from their perspective instead of assigning them motive and then judging them for it - which speaks to the core of the (vanished) OP's rant.

I'll be critical of anything I think needs criticism. it doesn't mean I don't respect the person being criticized. I'm criticized about 90% of my day. Criticism isn't a weapon. It's a tool. I would like the forums to be more inviting, because I would like to find someone, anyone, who is anything like me somewhere on Earth. I'll keep looking, but I sincerely feel a lot of people are put off of posting here because they don't feel welcome. But I don't work here, so it's not my place to try to make the forums better.

You seem to have decided what all LTS'rs think, and are responding/attacking in turn - and then at the same time trying to make a plea for unity and understanding.  I certainly don't think all "young" people or all newly diagnosed/infected people think unilaterally.

Nor do I thinkthat about LTSers. You can say it as much as you want, but I don't disrespect people unless they do something to deserve it. Likewise I don't automatically respect anyone without reason or expect the same back at me.

All I know is that, here in Atlanta (and from what I hear, in Arizona, Sounth Carolina, New York, and many other places) HIV/AIDS resources are shuttering because no one is taking the time or energy to physically be part of them.

$$$

We have more healthy people living with HIV now than ever. Yet when you look at the boards of citizen Ryan White committees, of ASOs, of HIV-related outreach, housing, food distribution and service programs, you do not see nearly enough of those people. You see faces mutilated by lipo, legs that can barely stand with a cane, thousand-yeard stares of people who have seen too much horror to even function for the most part. Fumes.

This is a problem with the middle class. I can't address it.

My losses do not make me superior to you. My losses have crushed me. They have darkened my soul and diminished my capacities. They have rendered me an outcast, and left me in the fringes of society.

Again, who do you think you're talking to? You've had HIV longer, but that's it. I have been here the whole time, but that gets negated because I wasn't fortunate enough to meet a strong enough strain to take hold until 2012. We've all suffered, most of us continue, but only your suffering has any sort of validation here.

I know of few people here who want to use their grief, their loss as a badge of honor. Most of us don't have that desire, nor the emotional luxury to do so.

Yeah, it's exhausting.

Empathy is, ultimately, a two way street. Trying to understand things from a different perspective is almost always beneficial to the conversation as a whole.

Yes, it is. Which is why I offer it though it gets rejected if I don't agree on every single issue. Disagreement is not disrespect.

That empathy is what I find missing in this discussion. All the LTS folks who have posted have tried to explain their frustration, anger, sadness, and exhaustion. But these words seem to fall on a lot of deaf ears.

I'm sorry you feel this way, but I didn't get this from this discussion at all. But I don't get to decide that, you do.
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 jkinatl2

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #44 on: July 13, 2013, 04:27:39 PM »
Now we are finally having a conversation. Thank you.

Quote
Why do you think I'm here? Because I feel great? Because I'm mentally stable? Because I have so many social outlets that I thought adding this one, as hard as it seems to be to talk to people here, would be good for kicks?

Something worth considering here is that it's consistently hard for you to establish meaningful, mutually respectful relationships here and elsewhere. Not a judgment - you have said as much several times. Why do you suppose that is? Are meaningful and mutually respectful relationships something that you desire? If so, what steps are you taking to bring about that change?

Quote
Some of us use it as suicide by virus, then that doesn't quite go as planned. But I do apologize for getting infected and placing more burden on the system. This comment sounds like it's asking for apology for some infraction, so.

That comment was absolutely NOT a request for an apology. I won't demean you by treating you like a victim or a child. Please do not demean youself by doing so, or insinuating that I would in any way benefit from such condescension.

You lash out when you write things like that. You realize that, right? You have taken personally things that were absolutely not aimed towards you (or any single person, actually) and then the converation grinds to a halt. You are capable of better than that. And I admit that one of my hot buttons is the ad hominem deflection. It's a cheap way to "win" an argument.

An argument that no one is or was having with you, I might add. Certainly not me.

Quote
I would like the forums to be more inviting, because I would like to find someone, anyone, who is anything like me somewhere on Earth. I'll keep looking, but I sincerely feel a lot of people are put off of posting here because they don't feel welcome. But I don't work here, so it's not my place to try to make the forums better.

Two points:

A) By and large, these forums are VERY inviting. If I fly off the handle or feel that I have been misinterpreted/misunderstood, I almost always apologise. MOreover, any one of us is not the forum. ALL of us are. These forums save lives every single day, and provide a safe place for the most accurate and compassionate assistance you are likely to find anywhere.

Need emergency meds? Someone is likely to donate.

Need resources? Someone is likely to look them up for you.

Need information? There isn't a better place for it.

I honestly don't get the whole "this forum isn't inviting" thing when the proof points clearly to the opposite. I not cannot speak to the apparent throngs that are too intimidated or scared or angy to post. As inclusive as it is, no forum is going to be a good fit for everyone, at every moment. Sometimes people don't like what they hear, and decide that the messenger, not the message, is the problem. Who knows?

B) You don't "work" here, but neither do I. Neither does Jeff, or Ann. We volunteer time to moderate, but I for one am still waiting for that sweet, sweet POZ.COM cash flow. You are a member of these forums, same as anyone else. And as such, it is not only your place but your responsibility to make the forums better. As it is mine, as it is everyone who takes out an account.

Quote
This is a problem with the middle class. I can't address it.

I disagree. When I served on a Ryan White Board, there were representatives of every socioeconomic class. I sat sandwiched between a lawyer and a sex worker advocate for needle exchange. One drove a BMW to the monthly board meetings, and the other took a train and two buses. Both had an rqual say in Ryan White allocation, and were an rqual part of the only oversight group for the state.

Quote
Yes, it is. Which is why I offer it though it gets rejected if I don't agree on every single issue. Disagreement is not disrespect.

As you said, I am sorry you feel this way. But I don't get to decide that. You do.




"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."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline bmancanfly

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #45 on: July 13, 2013, 05:05:45 PM »


That empathy is what I find missing in this discussion. All the LTS folks who have posted have tried to explain their frustration, anger, sadness, and exhaustion. But these words seem to fall on a lot of deaf ears.

That's not the way I saw this conversation.  Up to this point it was a pretty civil,  thoughtful discussion.  Not sure where you got that from.

I for one appreciate Oksikoko's perspective.  It's refreshing and a welcome change of pace.

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

 Bertrand Russell

Offline jkinatl2

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #46 on: July 13, 2013, 05:19:19 PM »
That's not the way I saw this conversation.  Up to this point it was a pretty civil,  thoughtful discussion.  Not sure where you got that from.

I for one appreciate Oksikoko's perspective.  It's refreshing and a welcome change of pace.



I do as well, which is why I have taken the time to engage rather than dismiss. I am sorry if my word choice suggested otherwise.

"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."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline bmancanfly

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #47 on: July 13, 2013, 05:46:49 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.





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

 Bertrand Russell

Offline oksikoko

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #48 on: July 13, 2013, 06:13:21 PM »
Now we are finally having a conversation. Thank you.

In a class forum, I was recently chastised and told it made me seem spiteful to quote people's words back at them and address them point by point. I disagreed with that, but different venues have different norms. I eventually had the highest "reputation" in that forum, so playing by their rules must have worked. I'll post a screenshot, as it was a class on AIDS.

Something worth considering here is that it's consistently hard for you to establish meaningful, mutually respectful relationships here and elsewhere. Not a judgment - you have said as much several times. Why do you suppose that is? Are meaningful and mutually respectful relationships something that you desire? If so, what steps are you taking to bring about that change?

I consider this everyday. I am obviously broken in some fundamental way, but that doesn't mean I don't also deserve a chance to meet other people broken in the same way I am. It's not that I'm unaware of this. What am I doing? Whatever the psychiatrist, therapist and 15,000 social workers tell me to do, whether I want to or not. I am not just sitting around complaining, though you make comments a lot that imply people aren't trying hard enough to meet whatever standard it is that's being discussed. Sometimes people just fail no matter how hard they try, and it's a little unfair to throw things like psychiatric conditions in their faces in arguments on other topics.

That comment was absolutely NOT a request for an apology. I won't demean you by treating you like a victim or a child. Please do not demean youself by doing so, or insinuating that I would in any way benefit from such condescension.

You lash out when you write things like that. You realize that, right? You have taken personally things that were absolutely not aimed towards you (or any single person, actually) and then the converation grinds to a halt. You are capable of better than that. And I admit that one of my hot buttons is the ad hominem deflection. It's a cheap way to "win" an argument.

I really have nothing to say to this.

An argument that no one is or was having with you, I might add. Certainly not me.

I wasn't having an argument, per se. Just saying something I thought a lot of other people thought. They don't chime in because I (think) I'm speaking for people who didn't stay here and aren't here now to say there's any merit. But there may be no merit. No harm, no foul, in my opinion. As I said up above, I'll try harder to avoid injecting this into other conversations.

Two points:

A) By and large, these forums are VERY inviting. If I fly off the handle or feel that I have been misinterpreted/misunderstood, I almost always apologise. MOreover, any one of us is not the forum. ALL of us are. These forums save lives every single day, and provide a safe place for the most accurate and compassionate assistance you are likely to find anywhere.

1) They're inviting to *you* because they are currently the way *you* like them to be. They aren't particularly inviting to *me* and people like *me*. I never said they weren't a great place for information and full of helpful people. That's a different story altogether. But they are not inviting to *everyone* and maybe they don't need to be. Maybe people like me should go somewhere else. However, being that there is nowhere else, it's here or nothing at the moment.

Need emergency meds? Someone is likely to donate.
Need resources? Someone is likely to look them up for you.
Need information? There isn't a better place for it.

True, but irrelevant. And the fact that you list them makes me think you misunderstand me entirely because I have never once negated any of these facts.

I honestly don't get the whole "this forum isn't inviting" thing when the proof points clearly to the opposite. I not cannot speak to the apparent throngs that are too intimidated or scared or angy to post. As inclusive as it is, no forum is going to be a good fit for everyone, at every moment. Sometimes people don't like what they hear, and decide that the messenger, not the message, is the problem. Who knows?

And white people don't understand what all the fuss is about on racism. I don't fault you for it, but if you're in the "in group" of course you don't see the problem. That's human nature.

And you often say people just "don't like what they hear". Please bear in mind that you are also sometimes just wrong. We all are. So someone who leaves and never comes back may have just felt bullied and without any connection to this community, they simply left for someplace they felt welcomed. I've seen posts where I would say the person was bullied away from the forums. I should've said something then, but that just leads to banning, and I'm rather a coward.

B) You don't "work" here, but neither do I. Neither does Jeff, or Ann. We volunteer time to moderate, but I for one am still waiting for that sweet, sweet POZ.COM cash flow. You are a member of these forums, same as anyone else. And as such, it is not only your place but your responsibility to make the forums better. As it is mine, as it is everyone who takes out an account.

Yes, I know you're volunteeers, and I appreciate that however much you refuse to believe it.

I disagree. When I served on a Ryan White Board, there were representatives of every socioeconomic class. I sat sandwiched between a lawyer and a sex worker advocate for needle exchange. One drove a BMW to the monthly board meetings, and the other took a train and two buses. Both had an rqual say in Ryan White allocation, and were an rqual part of the only oversight group for the state.

Sex workers are middle class. ;) You find a board willing to take someone like me and the people I know, and I'll show you a nonprofit about to go out of business. There's a lot of lip service about representing the served community, but I don't see a lot of it in practice. Of course, I stopped banging my head against the wall a long time ago because I don't like headaches or begging to be included. Maybe things have changed, so I won't argue this point.

As you said, I am sorry you feel this way. But I don't get to decide that. You do.

And I do.
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 oksikoko

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #49 on: July 13, 2013, 06:14:54 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".

snip

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

Thanks for stuff up above.

Also, this does make me a little scared for the younger generations, but maybe it's for the best. Reagan was pretty horrible, but so was Andrew Jackson, and we seem to be OK over a hundred years after his presidency even though everyone's forgotten what a douchebag he was. :)

Malice: none here. I'm working to balance out to 0 and avoid Hell as it is. ;)
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 #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 »
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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).
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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 #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. :)

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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 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

Offline 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."

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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.
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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

Online 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)


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Offline 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...
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 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.


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

 Bertrand Russell

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 .     

Offline 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."

 Bertrand Russell

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.

Offline Jeff G

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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 . 


Offline bmancanfly

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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?



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

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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. :)
31 years hiv+ (oct. 2013) with a curtsy.

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

 Bertrand Russell

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. ;-)

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

 Bertrand Russell

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.

Offline 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."

 Bertrand Russell

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-
Dates in this signature file conform to ISO 8601. ;-)

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-
Dates in this signature file conform to ISO 8601. ;-)

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
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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
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

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
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Labs - Pre-Meds
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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.

Offline 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?

"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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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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Offline wolfter

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #100 on: July 16, 2013, 10:45:30 AM »
Perhaps it's time to redefine the term here and allow other true LTS to post in that section.  Other than having immediate access to HAART, I'm sure many of these same people deal with the same long term mental, emotional, societal, career, medical and financial issues.

Wolfie
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Offline Joe K

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #101 on: July 16, 2013, 10:49:25 AM »
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. 

Thanks for the clarification and you are right, I misunderstood what you originally proposed.  I have no objection to changing any terminology and if necessary, I would support an expansion of the forums, if enough members feel the need for it.

Joe

Offline Ann

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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 jkinatl2

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #103 on: July 16, 2013, 11:08:59 AM »
"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."

-Kimberly Page-Shafer, PhD, MPH

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Offline mitch777

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Offline Ann

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #105 on: July 16, 2013, 11:13:40 AM »
Damn you. Cutting the argument off at the knees.



I know. I'm such a party-pooper.
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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

Online leatherman

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #106 on: July 16, 2013, 11:46:40 AM »
I fixed it.
"pre-HAART long-term survivors (PHLTS)"

are you god? or just an angel?  :-*

now I'm a PHLTS GLBT PLWHA with PTSD
(i think those acronyms need more vowels though ;) LOL)
leatherman (aka mIkIE)


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Offline Ann

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #107 on: July 16, 2013, 01:06:56 PM »
"pre-HAART long-term survivors (PHLTS)"

are you god? or just an angel?  :-*

now I'm a PHLTS GLBT PLWHA with PTSD
(i think those acronyms need more vowels though ;) LOL)

I'll have a BLT while you're at it, extra mayo! ;D

BTW (heh), one could pronounce PHLTS as "flits".
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 bmancanfly

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Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #108 on: July 16, 2013, 01:20:33 PM »
Holy crap!  I wish Congress moved this fast.  Thanks Ann

And thanks to everyone who participated in a very civil and thoughtful discussion.
My belief in the goodness of this place,  while strong before,  has been greatly strengthened.   This has been a very uplifting discussion.

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

 Bertrand Russell

Offline pittman

  • Member
  • Posts: 212
Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #109 on: July 17, 2013, 12:53:17 AM »
wow, catching up on posts, and saw this thread.

yet again, it is just a rehash of stigma transference.

Namely, that people treat HIV inconsistently and differently from other treatable diseases and health conditions. I simply do not see any where near the same level of scrutiny to assigning "guilt" for other conditions that are also largely avoidable through better decisions.

Throw in a little sex or drug use (aka, "sin") and boy that equation shifts in people's mind.  As a rule, we are much more willing to forgive or reserve (moral) judgement if  the perceived cause is less associated with a cultural stigma.

It's all a sliding scale of double standards. Forget to take the pill one time, and get pregnant? Accidents happen (but we still hope you are married, thank you very much.) Get HIV? you were being stupid.  Two dudes ever having sex without a condom? what were you thinking?  Oh, your married? then ok, no need for condoms. wait, married dudes you say? no seriously, that doesn't count, you should wear them anyway- after all, gay guys cheat. we never have of heard of straight couples being unfaithful. (but if on the off chance one strays, the other is still innocent, so we won't say you have to wear condoms, just cross your fingers that nothing bad happens.)

Now, seriously, can you see people in general being anywhere as concerned about trying to tell women with cervical cancer that if they'd only been wearing condoms, they probably would not have contracted the HPV that likely lead to it developing?


Offline wolfter

  • Member
  • Posts: 4,460
Re: Soooo angry I could explode!!!!! Arrrgh.
« Reply #110 on: July 17, 2013, 09:55:47 AM »


Namely, that people treat HIV inconsistently and differently from other treatable diseases and health conditions. I simply do not see any where near the same level of scrutiny to assigning "guilt" for other conditions that are also largely avoidable through better decisions.


I believe there are numerous diseases/illnesses that are viewed differently depending upon the causes.

Lung cancer from smoking is looked upon differently than those who developed it and didn't smoke
Diabetes while being hugely obese garners less compassion than for someone who is thin.
Heart disease, skin cancer,  etc...

Not that it's right, but we all tend to make these initial judgments.  It's mainly in how we deal with these internal judgments that matter.
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

 


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