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Author Topic: A New Forum: Long-Term Survivors  (Read 32775 times)

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Offline BT65

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Re: A New Forum: Long-Term Survivors
« Reply #150 on: November 20, 2009, 05:28:38 PM »
Yeah, and there are some LTS'ers I miss also, a lot.  I also often wonder if Robert's farm animals miss him while he's on these forums spreading his good cheer.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Andy Velez

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Re: A New Forum: Long-Term Survivors
« Reply #151 on: November 21, 2009, 07:14:34 AM »
BT, keep your not-so-veiled nasty comments to yourself. That kind of potstirring can get you a Time Out.

Consider yourself warned. 
Andy Velez

Offline skeebo1969

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Re: A New Forum: Long-Term Survivors
« Reply #152 on: November 21, 2009, 01:41:24 PM »

    
2 years later and I dare say the majority of us do exactly that.  Also, at the same time I can think of some LTS folks who decided to depart these forums for good for the reasons raised here, and no I don't mean because of banning.

Man you waited two whole years to respond, that is some damn fortitude right there! ;)  

One thing I noticed is when you LTSers are not getting along I have to peruse through 2-3 forums to understand why. Couldn't you guys leave some cliff note type references at the bottom of your post? I didn't even know Robert has farm animals. I'm from Tennessee and I like sheep and cows a really really whole lotta lotta! ;)
I despise the song Love is in the Air, you should too.

Offline MWCLTonline

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Re: A New Forum: Long-Term Survivors
« Reply #153 on: November 23, 2009, 02:09:30 AM »
Re: In your opinion, what is a long term survivor?
ę Reply #155 on: Today at 01:11:57 am Ľ
       
I been thkn abt this all day...  !
Even had a reply ready to go, went to preview - was cautioned there had been 37 more postings and lost it  ...


Quote from: actupts on Yesterday at 08:02:18 pm
"Someone who is diagnosed today, or even in 2000, and put on a benign once or twice daily regimen, and told they can keep working and living a normal life, will never understand how being a person with AIDS rapidly became one's whole identity."

 Sure they will!  'Cuz they'll get the authentic history lesson from us and we'll remind them!  And that's as it should be, the Elders MENTORING the next generation of LTSers  !  Perhaps they'll be on the frontlines when there's a cure, or at least a vaccine  !

So, as I was fumin' & fussin' over being stood up by the exterminator yesterday --after stripping the bedding & furnishings, up-ending the mattresses, pullin' everything away from the walls  and then went to Walgreens & got a coupla new throws and a twin size aerobed thkin' I would use it last nite & have around....  ended up too pissed off to blow it up & didn't have a way to hook my sweeper up to do it so I slept on the couch...   I'm  lookin' in the paper and note an announcement for our local annual observance and am reminded that we have a World AIDS Day.  Perhaps that's it, if you have AIDS... 
Nope, that don't necessarily cut the long-term mustard since stigma and discrimination are still barriers to early testing and treatment   !

In any case, I think it's all about HIV, Bitches!  And everyone wants to be the QueenBee of the HIVe...  !  In this War (against HIV, stigma, AIDS, discrimination, Underfunding, complacency, waiting lists, bigotry....) that we are all surviving, there are and have only been 2 Alert Levels: *Find/Get a Helmet! and *PUT ON THE HELMET!  HIV, AZT, 3TC, "And The Band Played On...", PI's, Ryan White Care Act, ADAP, "Philadelphia", Larry Kramer, ACT-UP...; we've been puttin' the helmet on & off for way too long!  This discussion of stigma & discrimination/segregation amongst ourselves sure ain't gonna do anything to help the cause!  It's time we all put the helmets firmly on for good!  The least we as LTSers can do for all those who've come after us, is be their Helmets!

I went back and read killfoile's original post establishing the LTS forum and then followed up w/ Andy Velez's post:

Quote from: Andy Velez on April 26, 2008, 11:14:04 pm
"From time to time, as has happened again just recently, the question comes up as to who and what is a longterm survivor. Those who've been around here for a while know the conversation can become a contentious about this subject. People have wondered (and worried) if they qualify. Do you have to be HIV+ for at least 5 years to qualify?Some have resented those who are relative newcomers by the standard solely of length of time they've known themselves to be infected.

Some have learned very soon after becoming infected about their status. For others it has been a longer time and even years during which they either didn't know or sometimes suspected but didn't get tested for various reasons until circumstances such as becoming very ill made their positive status official. 

As you know from reading in the I JUST TESTED POZ, lots of people come here when it's all brand new. Someone just wrote in here to this site the other days only hours after being told. To him someone who's been living with HIV for even a year or two might be considered a longterm survivor.

What I suggest is that more important than the length of time one has been positive is how one feels about it and themself  as a veteran of living with the virus. Further, that's it's more important to continue to share experiences, information and points of view here than it is create any kind of a clique or hierarchy about this. For sure those who have lived through the earlier years of the epidemic  sometimes have memories and insights that are valuable. Some have offered an amazing perspective and knowledge about everything from meds to politics to very personal experiences. And others whose experience has been shorter have been through a lot too as you know if you're a regular reader here.

Overall I would just like to have this forum always be welcoming. Anyone who wants to be here is in as far as I am concerned. ***And I hope the spirit of inclusion will dominate over anything else.***"

Quote from: killfoile on April 06, 2007, 12:36:41 pm
"Thanks for the support and Thunter, I like your forum title, so I changed the suggested name to HIV and Aging.  I know the need for an aging forum is paramount, because us dinosaurs have always looked to each other as we truly share the history of being on the front lines and that has shaped our HIV world in a way that can never be repeated.  I need my friends to support my challenges, the same as you all do.

***And Milker, since you asked, I would see no problem with anyone using the forum as long as they respected the purpose of it.  Nobody is seeking to exclude anyone, just create a new space for a segment of the forum with some unmet needs.***

 A New Forum: Long-Term Survivors
ę on: April 06, 2007, 12:18:05 pm Ľ   

--------------------------------------------------------------------------------

I would like to propose the addition of a new forum for us longterm survivors who have been living with HIV for a very long time.  There are so many pozzies on here who number their infected years in decades and just like the other segments of these forums, I believe that we have unique needs that may be met by adding a new forum.

These forums have changed dramatically in the last two years and while I may not always like some of the changes, I will always support this site because there are many people here who I love deeply.  We all know the face of HIV has changed as is reflected in the diversity of this site.  However, for many of us, little has changed and I want to return here and resume my friendships, but I cannot do that in most of the forums that now exist.

I need a place to feel safe and discuss some real issues that are affecting us all.  I want a place where we can exchange ideas and offer support, without the personal attacks from others who do not share our outlook.  Many of us are facing real "end-of-life" issues and we need the support of our brethren, many of whom have been pushed aside by the forums explosive growth.

The face of HIV for many of us, is the one we see in the mirror each morning and for many, it may be all that we have.  Those of us who have lived for decades with this disease have unique needs and we need a place to share our hopes and fears without reprisal from others. many of whom paint our laments as insignificant whining.  And to an extent I can understand the divide, yet our needs remain.

To some, it may appear that this is just another "complaint" from an old-timer, when it fact it is a plea for help.  I want and need these forums and since we have the ability to adapt, I respectfully submit my idea for consideration."

I wondered what killfoile thought about all this and Lo & Behold his reply was amongst those 37 postings that interrupted my train of thought...   :

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

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

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

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

edited to add: I also find the description of HIV as a degenerative disease to be laughable. It's a virus that sole mission is to kill it host. It is not a chronic manageable disease for many of us here and to suggest otherwise, is again insulting to this forums members."

Hhmmm...  I'm not insulted, I'm still alive and well after 18 years because my incurable HIV that became chronic AIDS is now a disease that can be managed;  I'm happy and proud that I was there on the frontlines and have lived to tell...

Happy Thanksgiving, World AIDS Day and Best Regards for the Holidays!
Michael
http://mwcltonline.spaces.live.com/
MWCLTonline
"Coming OUT of Hiding: A Retrospective Journey thru AIDS..." Part III: "WTF: Now! I'm gonna Live...?!?"
"HIV is something you live with every day for the rest of your life. You may never die of It, but you will always die with it..."

Offline David_CA

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Re: A New Forum: Long-Term Survivors
« Reply #154 on: November 23, 2009, 09:28:27 AM »
According to how several here have defined a 'LTS', I'll never be one because I was infected after the 80's, 90's, HAART, etc despite having an AIDS diagnosis and having had severe PCP.  I've been diagnosed for 3.5 years, and it's safe to say I've been infected for 5 or so.  In 15 years, I'll have been infected for 20 years, be 58 years old, and likely facing all kinds of crap from meds or HIV itself. 

It's not that I consider my situation special or unique.  In fact, it's just the opposite - typical for a gay man in his 40's diagnosed in 2006 who has insurance.  I've had a few friends that haven't survived HIV / AIDS and have many more that are living with it now.  I imagine that I'll have an 'easier' time dealing with HIV (physically) than most of those with early diagnosis, though there are members here who've gone for years without meds and, by their own admission, have not had serious issues with their meds. 

I can understand not wanting newly diagnosed posting in the LTS forum, but I have a hard time understanding how my participation years from now (if I'm even posting here or am even still alive) would somehow bother, interfere, or somehow negatively effect somebody from the old days of HIV / AIDS.

David
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline sharkdiver

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Re: A New Forum: Long-Term Survivors
« Reply #155 on: November 23, 2009, 09:54:59 AM »
One of the problems is that newly diagnosed and yes even negative members have been coming in and asking questions or even making comments about threads (oh, that is horrible, I can't imagine every going through that, that is scary, etc. etc) 


Offline skeebo1969

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Re: A New Forum: Long-Term Survivors
« Reply #156 on: November 23, 2009, 10:22:59 AM »
One of the problems is that newly diagnosed and yes even negative members have been coming in and asking questions or even making comments about threads (oh, that is horrible, I can't imagine every going through that, that is scary, etc. etc) 

It's hard to stop that from happening when you come to an online public support forum.

Why couldn't the LTS just use the report to moderator button?  or perhaps just ask the perp to quit posting?  If they don't respect your requests then a moderator could handle it from there.  It's nothing that needs all this nastiness....  I mean really, is all this necessary?

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

Offline sharkdiver

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Re: A New Forum: Long-Term Survivors
« Reply #157 on: November 23, 2009, 10:26:03 AM »
It's hard to stop that from happening when you come to an online public support forum.

Why couldn't the LTS just use the report to moderator button?  or perhaps just ask the perp to quit posting?  If they don't respect your requests then a moderator could handle it from there.  It's nothing that needs all this nastiness....  I mean really, is all this necessary?



do you think that the majority of the people in the LTS haven't done that? akkk that's why this discussion was necessary.

Online Miss Philicia

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Re: A New Forum: Long-Term Survivors
« Reply #158 on: November 23, 2009, 10:34:26 AM »
do you think that the majority of the people in the LTS haven't done that? akkk that's why this discussion was necessary.

Not only that, but we were lectured by a purported fellow LTS'er for doing so, only to find out by looking over his older posts that he claimed just 3 years ago to have been diagnosed in 2003.  So let's just call the shit stirring for what it is here.  It's a shame that many members in long standing hold a grudge and exhibit their own biases.
"Iíve slept with enough men to know that Iím not gay"

Offline skeebo1969

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Re: A New Forum: Long-Term Survivors
« Reply #159 on: November 23, 2009, 10:41:15 AM »
do you think that the majority of the people in the LTS haven't done that? akkk that's why this discussion was necessary.

Bring up names them...  since you are posting this in the Living With forum tell everyone who the perps are.  The list must be long to invoke the anger I have seen demonstrated in this thread.  Personally I respect the LTS forum.  What I would like to know is who does not?  If it is some newbie asking a question then slap them on the hand for doing so and at the same time understand it's hard to stop this from happening.

As far as the problem of members doing it who should know better, all I can say is I'm sorry but that's an issue that individual has and it shouldn't be a reflection on the rest of us non LTS people.  If nothing is being done then I am in agreement with you guys in that something should be done to stop it from happening.
I despise the song Love is in the Air, you should too.

Offline skeebo1969

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Re: A New Forum: Long-Term Survivors
« Reply #160 on: November 23, 2009, 10:48:50 AM »
Not only that, but we were lectured by a purported fellow LTS'er for doing so, only to find out by looking over his older posts that he claimed just 3 years ago to have been diagnosed in 2003.  So let's just call the shit stirring for what it is here.  It's a shame that many members in long standing hold a grudge and exhibit their own biases.

Wasn't going to say anything, but glad you did.  And street justice forum style will prevail on that matter as it usually does..lol.  The only issue I have with the LTS forum personally is I miss a lot of the old members over there who use to frequent the old forums....  but I do realize this is purely a selfish thing on my part.

To be honest I thought you guys were handling these issues over there already.  I wasn't aware you guys were being disrespected, but then again who am I.....I'm just Thomas.
I despise the song Love is in the Air, you should too.

Offline David_CA

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Re: A New Forum: Long-Term Survivors
« Reply #161 on: November 23, 2009, 11:03:09 AM »
One of the problems is that newly diagnosed and yes even negative members have been coming in and asking questions or even making comments about threads (oh, that is horrible, I can't imagine every going through that, that is scary, etc. etc) 

I understand that... like those in AII posting in LWH.  The moderators do a great job policing that forum with a bit of help from members, I'm sure!
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline Dachshund

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Re: A New Forum: Long-Term Survivors
« Reply #162 on: November 23, 2009, 01:44:37 PM »
 

I can understand not wanting newly diagnosed posting in the LTS forum, but I have a hard time understanding how my participation years from now (if I'm even posting here or am even still alive) would somehow bother, interfere, or somehow negatively effect somebody from the old days of HIV / AIDS.

David

It won't. We'll all be dead or face down in our oatmeal at Shady Acres. Knock yourself out. But when you speak of us, and you will. Be kind.

Offline Joe K

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Re: A New Forum: Long-Term Survivors
« Reply #163 on: November 23, 2009, 02:08:18 PM »
I can understand not wanting newly diagnosed posting in the LTS forum, but I have a hard time understanding how my participation years from now (if I'm even posting here or am even still alive) would somehow bother, interfere, or somehow negatively effect somebody from the old days of HIV / AIDS.
In 15 years you will be someone from the old days of HIV/AIDS. You will just be from a different slice of the HIV continuum and when that time comes, I would expect the welcome thread to be updated, to reflect that new reality. Maybe a cure will be found in the future and you might become a LTS, pre-cure. Given that, don't you think you may have issues, that the newly infected can never understand? In essence, that is the same argument that we are making now, to restrict the posting to only LTS members.

I am also insulted by many of the comments here, as if we were asking to drastically change something about this forum, when all we seek, is the same consideration given to other forums. I refuse to make this us vs. whoever, so let me just leave you all with this. We want and need this forum, to be a refuge for LTS members, plain and simple. So we all have essentially two options here. You can either disagree on the proposed changes to the forum and present your views respectfully, or you can simply seek to disrupt the discussion, with insensitive and ignorant comments.

I have been a member here since 2002 and I cannot count how many LTS members we have lost, because they did not feel comfortable posting in the other forums. Is it really so much to ask, that we have a place to call our own? Exactly who are we hurting by doing this? As opposed to how many more LTS, will be marginalized and leave, if we do not do this? To me, that is the real issue here.

Offline David_CA

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Re: A New Forum: Long-Term Survivors
« Reply #164 on: November 23, 2009, 03:47:07 PM »
It won't. We'll all be dead or face down in our oatmeal at Shady Acres. Knock yourself out. But when you speak of us, and you will. Be kind.
Now I doubt most of you guys will be dead... drooling on yourselves, maybe, but more likely still kickin' and crabby as ever!  ;)  I will be kind, if possible; remember, I'll be old(er) too and probably a bit grumpier myself!
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Online Miss Philicia

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Re: A New Forum: Long-Term Survivors
« Reply #165 on: November 23, 2009, 03:56:51 PM »

I have been a member here since 2002 and I cannot count how many LTS members we have lost, because they did not feel comfortable posting in the other forums. Is it really so much to ask, that we have a place to call our own? Exactly who are we hurting by doing this? As opposed to how many more LTS, will be marginalized and leave, if we do not do this? To me, that is the real issue here.

That's the bottom line.
"Iíve slept with enough men to know that Iím not gay"

Offline sharkdiver

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Re: A New Forum: Long-Term Survivors
« Reply #166 on: November 23, 2009, 05:28:28 PM »
isn't posting the same post in different threads considered spamming?

Online Miss Philicia

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Re: A New Forum: Long-Term Survivors
« Reply #167 on: November 23, 2009, 05:40:25 PM »
yes
"Iíve slept with enough men to know that Iím not gay"

Offline leese43

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Re: A New Forum: Long-Term Survivors
« Reply #168 on: November 23, 2009, 05:47:45 PM »
isn't posting the same post in different threads considered spamming?

I think more than one person has been guilty of that recently...
Oct 04 - Neg
Aug 05 - infected
Oct 05 - cd4 780, vl 60k
Apr 08 - cd4 430, vl 243
Jul 08 - cd4 550, vl 896
Nov 08 - cd4 730, vl 1.8k
May 09 - cd4 590, vl 1.5k
Sep 09 - cd4 460 vl 34k
Dec 09 - cd4 470 vl 42k
April 10 - cd4 430 vl 88.5k
July 10 - cd4 330 vl 118k
Aug 10 - started reyataz/truvada/norvir
Aug 10 - cd4 380 vl 4k (12 days after starting meds :))
Sep 10 - cd4 520 vl 1.5k
Oct 10 - cd4 590 vl 44
Jan 11 -cd4 610 vl <40 cd4% 50
May 11 - cd4 780 vl UD

Offline jm1953

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Re: A New Forum: Long-Term Survivors
« Reply #169 on: November 23, 2009, 09:49:52 PM »
I would like to propose the addition of a new forum for us longterm survivors who have been living with HIV for a very long time.  There are so many pozzies on here who number their infected years in decades and just like the other segments of these forums, I believe that we have unique needs that may be met by adding a new forum.

These forums have changed dramatically in the last two years and while I may not always like some of the changes, I will always support this site because there are many people here who I love deeply.  We all know the face of HIV has changed as is reflected in the diversity of this site.  However, for many of us, little has changed and I want to return here and resume my friendships, but I cannot do that in most of the forums that now exist.

I need a place to feel safe and discuss some real issues that are affecting us all.  I want a place where we can exchange ideas and offer support, without the personal attacks from others who do not share our outlook.  Many of us are facing real "end-of-life" issues and we need the support of our brethren, many of whom have been pushed aside by the forums explosive growth.

The face of HIV for many of us, is the one we see in the mirror each morning and for many, it may be all that we have.  Those of us who have lived for decades with this disease have unique needs and we need a place to share our hopes and fears without reprisal from others. many of whom paint our laments as insignificant whining.  And to an extent I can understand the divide, yet our needs remain.

To some, it may appear that this is just another "complaint" from an old-timer, when it fact it is a plea for help.  I want and need these forums and since we have the ability to adapt, I respectfully submit my idea for consideration.

Totally agree.  As we all know HIV/AIDS has it's own individual nature in those of us infected.  And Long Term Survivors, many of whom have been infected since the 80's and forward are the true trailblazers in learning about how HIV and the meds we have taken for years affects the body. 

It is being found there is a predominance in heart disease, kidney disease, arthritis, osteoporosis, and so much more in long term survivor patients.  Whether it is the disease, the meds, or both is a true area for study.

Thanks for sharing this idea.
Positive 25 years. 7/21/2012 Current CD 4: 780 Viral load: less than 50. 38 to 40%
Current drug regimen, Isentress, , Emtriva, Sustiva Wellbutrin, Klonipin, Allegra, Ambien, Testosterone, Nandrolone, Vicodin, Benedryl, Aspirin, lots of vitamin supplements.

 


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