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Author Topic: A New Forum: Long-Term Survivors  (Read 32676 times)

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Offline J.R.E.

  • Member
  • Posts: 7,159
  • Joined Dec-2003 Living positive, since 1985.
Re: A New Forum: HIV and Aging
« Reply #50 on: April 07, 2007, 09:57:21 AM »
joe and thunter...


I don't think length of time with the virus is the criteria for this particular forum but rather how we learn to cope as we grow older.  Not all of us are "Veterans".  I've only been diagnosed since 2003 (I have NO idea when I contracted this little bugger) but I am getting old (57) and feel the effects everyday, from depression to fatigue to forgetfulness.  LIttle things, you know, that maybe those younger than us, just don't focus on. 

robert




The above quote from Robert, Is why I believe we need this forum in addition to the reasons Joe has stated. Some of us are getting up there in the years, and will certainly face more issues. And even if Robert, has only been infected since 2003, his age qualifies him. !

Once again, my own personal thoughts. I would like to see a more mature forum. No bells and whistles, no pics no flashing headlines, just straighttalk communication, where we can all continue to learn from each other.

We want a forum where hopefully there won't be anymore digs, swipes, name calling. It's not about creating a forum for a select dozen or so people, it's about creating a forum, for those of us, that want to show the REAL face on HIV/AIds, and are able to discuss it openly and honestly, without someone jumping in and taking swipes, and jabs at our experiences.


Thankyou------Ray

PS : We don't need anymore of these subliminum messages that seem to get into the threads , that make it uncomfortable for some of us !
« Last Edit: April 07, 2007, 09:59:26 AM by J.R.E. »
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline Grinch

  • Member
  • Posts: 325
Re: A New Forum: HIV and Aging
« Reply #51 on: April 07, 2007, 10:17:05 AM »
I'd love to see a forum like this.  A 45+ forum would hopefully be a calm place to talk about AIDS and our struggles, and hopefully remain free of the AMDC (Aids Meds Drama Club).  It's not possible to post anything at this time that this vocal minority doesn't hijack or jump all over.  Though with all the uproar about giving the women a place of their own I'm not holding my breath.

Offline RAB

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  • Posts: 1,895
  • Joined March 2003
Re: A New Forum: HIV and Aging
« Reply #52 on: April 07, 2007, 10:19:28 AM »
To clarify, my suggestion centers on a new forum for Long-Term Survivors and by that term I mean pozzies who have lived with HIV for a long time. 

Joe:

I like that idea and would like to see it given a try.  Thank you!

RAB

Offline Basquo

  • Member
  • Posts: 3,258
Re: A New Forum: HIV and Aging
« Reply #53 on: April 07, 2007, 10:33:59 AM »
I don't see myself posting in such a forum anytime soon, but I would sure learn a lot.  I think it's a good idea.  Thanks, Joe!

Creighton


***edited to say thanks to Tim, too!
« Last Edit: April 07, 2007, 10:54:15 AM by Basquo »

Offline allopathicholistic

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Re: A New Forum: HIV and Aging
« Reply #54 on: April 07, 2007, 10:36:52 AM »
I don't see myself posting in such a forum anytime soon, but I would sure learn a lot.  I think it's a good idea.  Thanks, Joe!

Creighton

I love the educational aspect of it too. I won't post but you can bet the farm I'll be reading most of the threads  :-*

Offline thunter34

  • Member
  • Posts: 7,314
  • His name is Carl.
Re: A New Forum: HIV and Aging
« Reply #55 on: April 07, 2007, 10:49:32 AM »
Can I go on record as saying I consider folks who make it into their 50's and on are "Long Term Survivors" whether they have HIV or not? 

That's always been my opinion of 'em.   I quite like that title.  I had the same hang ups about HIV Veterens and HIV and Aging (even though that was what I came up with originally). 

Thus far, I gotta go with Daniel.  I think "Long Term Survivors" suitably encompasses both.


PS-  I also think "Long Term Survivors" is an attitude as much as anything marked on a calender.
« Last Edit: April 07, 2007, 10:51:30 AM by thunter34 »
AIDS isn't for sissies.

Offline Moffie65

  • Member
  • Posts: 1,755
  • Living POZ since 1983
Re: A New Forum: HIV and Aging
« Reply #56 on: April 07, 2007, 11:05:22 AM »
Since a question has been added via Peter's post, I would like to add a post supporting Long Term Survivors.  This term is one that is used beyond this forum and this site, and implies by the words that the person has been infected for some time, and therefore has different issues, needs and questions for discussion.  I know I have a number of issues right now as we are discussing this new idea, that I would be more than glad to open up for discussion right here.  Questions that sometimes baffle my doctor, and at the same time, might be things that are being dealt with by other members of this site. 

One thing that would be required would be a locked introductory post that would make it very clear as to the intent and the expected behavior in the forum.  Sort of like the new women's forum where I forgot to read the introduction post and made a mistake of posting there.  I quickly sent off a note to Ann to request it be either moved out of there or deleted altogether, but at least I could read the intro. and realized in no uncertain terms that I had made a mistake.  This would be necessary.

In that light, I would support the name "Long Term Survivor, and hopefully if that isn't good, we can come up with some title for the forum that would be unquestionably, a safe and secure place for us to discuss these very quizical questions.

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

Offline gemini20

  • Member
  • Posts: 262
Re: A New Forum: HIV and Aging
« Reply #57 on: April 07, 2007, 11:07:27 AM »
I fully support the idea of a space for long-term survivors because that was exactly what I was searching for when I first came across AIDSmeds.

Since it's been 16 years since my diagnosis I guess I would qualify but as someone who is still relatively young i.e. only 37, I might be put off if I thought the proposed forum was for those over a certain age.

I do agree that it would probably be spared the 'dramas' of other forums and for that I would be most thankful as good old-fashioned peer support is all I'm after.

Emma




Diagnosed 11th September 1991
Current CD4 count 484 (26%); viral load undetectable (December 2011).
Restarting boosted Prezista 08/04/11

Offline dad1216

  • Member
  • Posts: 135
Re: A New Forum: HIV and Aging
« Reply #58 on: April 07, 2007, 11:09:23 AM »
Finally, I know most of the people who are supporting this proposal and I believe they share the frustration that has been experienced in some of the forums, due to the explosive growth of the forums.  Personally, I believe it will be easier to maintain a LTS forum as I expect most of the posters in the actual forum will insist on the existence of a respectful and supportive place to share our challenges.


I need a forum like this and hope it happens soon...
23 years HIV+ (Oct 88)
11 years AIDS (March 00)

CD4=83  VL=47,000  (May 2011)
CD4=63  VL=78,470  (Oct 2010)
Prezista..Norvir..Truvada

Offline thunter34

  • Member
  • Posts: 7,314
  • His name is Carl.
Re: A New Forum: HIV and Aging
« Reply #59 on: April 07, 2007, 11:26:56 AM »
Wow. 

Can you say "tidal wave of support for an idea"?

Right on.
AIDS isn't for sissies.

Offline jack

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  • fomerly the loser known as Jake
Re: A New Forum: HIV and Aging
« Reply #60 on: April 07, 2007, 11:45:38 AM »
Joe, good idea and good to have you back just in time for the next election.
And from one old sack of crap,thank God for Prezista. First time in 18 years of drugs I dont feel like total crap or have to crap all day long all week long.

Offline Miss Philicia

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  • celebrity poster, faker & poser
Re: A New Forum: HIV and Aging
« Reply #61 on: April 07, 2007, 12:42:41 PM »
I fully support the idea of a space for long-term survivors because that was exactly what I was searching for when I first came across AIDSmeds.

Since it's been 16 years since my diagnosis I guess I would qualify but as someone who is still relatively young i.e. only 37, I might be put off if I thought the proposed forum was for those over a certain age.

I do agree that it would probably be spared the 'dramas' of other forums and for that I would be most thankful as good old-fashioned peer support is all I'm after.

Emma


I agree Emma.  Age shouldn't be the qualifier.  Years since infection should be one marker, but for me an even more appropriate one is years on HAART.  There are many here who were infected 20 years ago but only went on meds in the past 5 years or so.  They're experience (and I'm not trying to diminish them) is very different from those of us who have been on the Toxic Stew for 15 years or more.

I guess my question is, will this forum be about advanced age per se, or about the long term effects of HIV infection, or about the long term effects of toxic medications.  OK, I'm sure it will end up being about all three of these things but I thought I'd just throw this out there as it was on my mind.

I'm always surprised about the wide variety of experiences of the Long Time Survivors on this board, and how many avoided any HIV meds for a long, long time.  And then there are some who seemed like Long Term Non-Progressors only to seemingly wake up one day after a decade of good health with HIV, and find themselves with 20 cd4's... though when I've read of this I've always wanted to ask if this happened because they'd not been regularly monitoring their numbers with doctors visits.

Anyway, this would be what I expect from this prospective new forum section and the kinds of questions I'd love to ask and the kind of stories I'd be interested in sharing and hearing about.
"Iíve slept with enough men to know that Iím not gay"

Offline Joe K

  • Global Moderator
  • Member
  • Posts: 3,661
  • 31 Years Poz
Re: A New Forum: HIV and Aging
« Reply #62 on: April 07, 2007, 01:08:38 PM »
I believe we should keep the LTS title and I want to repeat that a Long-Term Survivor is being defined as someone who has lived for HIV for an extended period, however, what we define that period to be, is something I want to avoid at all costs.  Someone who had been poz, say for 7+ years, can be experiencing more extreme challenges, than someone like me, with 23 years.  The point remains that there are additional challenges to LTSers and we need a forum in which to bare our deepest, darkest hopes and fears.

In the past, the Living With HIV forum has shepherded far too many members, onto their final resting places, because it was a special place, where everyone was simply poz and all that mattered (and I mean all) was trying to help other posters to the best of our ability.  We were not perfect and yes we bickered, but rarely (and I truly mean rarely) did posters go after each others throats.  I believe we can once again have such a forum as the majority of posters will be like-minded in seeking the support that we all need.  We do not need moderators to set the tone of a forum and I respectfully submit that if we get this new forum, we the participants will police our own.  All that will be required is for posters to treat others with dignity and respect.  Not always easy to do, however it is paramount to establishing a safe and nurturing environment.  (And I imagine if you cannot fathom my last comment, that the new forum will probably not be a place for you.)

For most Long-Term Survivors, our lives already contain enough drama, or medical BS and for too many of us, we need a place to seek validation on what we are experiencing and to share our experiences with others.  There are simply too many challenges that are unique to LTSers for us to not try and create a new forum to meet our needs.

Rather than focusing on what this new forum WILL NOT BE, I ask that you consider reaching for the stars.  Dozens of you want this forum, so embrace it and when it opens, join us in creating the kind of forum that LTSers want and need.  All of these forums derive their strengths/weakness from the caliber of the posters contained within.  This site is heaven-sent to all of us and proof of that is repeatedly shown by the expansion of the forums, based on members requests.

Come and let us see what we can "build" together.
« Last Edit: April 07, 2007, 01:20:00 PM by killfoile »

Offline Ody

  • Member
  • Posts: 33
  • Diagnonis 3/86
Re: A New Forum: HIV and Aging
« Reply #63 on: April 07, 2007, 01:45:22 PM »
I vote yes to LTS
Take a deep breath and forgive yourself, no since in you making it harder, that's someone else's job and you know they are more qualified, just ask um!

Offline J.R.E.

  • Member
  • Posts: 7,159
  • Joined Dec-2003 Living positive, since 1985.
Re: A New Forum: HIV and Aging
« Reply #64 on: April 07, 2007, 02:59:55 PM »
Can I go on record as saying I consider folks who make it into their 50's and on are "Long Term Survivors" whether they have HIV or not? 


 ;) Of course you can !!!! Even before I became HIV positive 22 years ago, I was living a reckless lifestyle, I often wondered if I would make it to 50, when I was 30 years of age. Well...I made it to 55 so far !!


Ray


PS : LTS name is fine with me. I only threw "HIV veteran" out there,.. but that can be confussing....
« Last Edit: April 07, 2007, 03:02:58 PM by J.R.E. »
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline AlanBama

  • Member
  • Posts: 3,626
  • Alabama: the 'other' 3rd World Country!
Re: A New Forum: HIV and Aging
« Reply #65 on: April 07, 2007, 03:07:47 PM »
I thought about it last night, and I believe "Long Term Survivors" is the best title.
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline pozinbama

  • Member
  • Posts: 74
Re: A New Forum: HIV and Aging
« Reply #66 on: April 07, 2007, 03:28:18 PM »
I don't like the possibility of it increasing the divide between people here. I'm pretty new to the boards, pretty new to my diagnosis(few months), pretty new to meds(couple months), but I also have a partner who is poz now over 20 years, so I live with a long term survivor. I'm not sure where I would fit in. I'm very interested in what is going on in the lives of those who have had it longer. But if I've not been on meds long enough will I not be able to participate? It is you long-term folks that are keeping most of the newbies coming back here I think. If you separate yourself from us, and say you have to wait until you're sicker longer to participate I don't see the good in that.

Offline DanielMark

  • Member
  • Posts: 1,475
Re: A New Forum: HIV and Aging
« Reply #67 on: April 07, 2007, 03:32:57 PM »
Quote from: thunter34
Thus far, I gotta go with Daniel.  I think "Long Term Survivors" suitably encompasses both.

I feel the same way Tim, and I also prefer the empowering word "survivor."

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline J.R.E.

  • Member
  • Posts: 7,159
  • Joined Dec-2003 Living positive, since 1985.
Re: A New Forum: HIV and Aging
« Reply #68 on: April 07, 2007, 03:39:01 PM »
It is you long-term folks that are keeping most of the newbies coming back here I think. If you separate yourself from us, and say you have to wait until you're sicker longer to participate I don't see the good in that.

Hello Poz,


I disagree with that completely. I think what the newly infected don't want to hear, is the truth that HIV still kills,
The newly infected do not want to hear  about the possibility of liver failure, kidney failure, dementia, blindness loss of hearing or anything else related to living with HIV long term. That what scares them. And it should !!


I am still going to participate in the other forums ( even if this new forum is created.)  I won't stop doing that,... But I also need a safe place too.


Ray

Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline AlanBama

  • Member
  • Posts: 3,626
  • Alabama: the 'other' 3rd World Country!
Re: A New Forum: HIV and Aging
« Reply #69 on: April 07, 2007, 03:44:25 PM »
I was just about to quote that same passage Ray!   We're on the same wave-length today...

I agree, it's not us LTS that are keeping the newbies coming back.  We need a safe space too.   Where we can discuss our aches and pains, both major and minor, and not be concerned about how to "word" our post so that no one gets upset by it.
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline J.R.E.

  • Member
  • Posts: 7,159
  • Joined Dec-2003 Living positive, since 1985.
Re: A New Forum: HIV and Aging
« Reply #70 on: April 07, 2007, 03:47:32 PM »
Poz,

I misread your statement. I read it as,It is you long-term folks that are keeping most of the newbies from coming back here I think. Somewhere along the way I put the word "from" in your quote.


I sincerely apologise  !!!!


Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline pozinbama

  • Member
  • Posts: 74
Re: A New Forum: HIV and Aging
« Reply #71 on: April 07, 2007, 03:53:12 PM »
Poz,

I misread your statement. I read it as,It is you long-term folks that are keeping most of the newbies from coming back here I think. Somewhere along the way I put the word "from" in your quote.


I sincerely apologise  !!!!


Ray

Thanks for clarifying.....I, at least for one of the newbies and I can't be the only one, DO want to be able to learn from the people that have been on the road longer than I have. I DO want to hear the Truth about HIV, and I don't think I'm going to get that from only participating in forums with other Newbies.

Offline Lou-ah-vull

  • Member
  • Posts: 948
Re: A New Forum: HIV and Aging
« Reply #72 on: April 07, 2007, 03:58:34 PM »
While relatively new to the diagnosis (late 2005) and HAART (May, 2006), I am over 50 and find my issues are not the same as those in their 20s and 30s.  I hope this new forum will "cater" to those in their midyears and have midyear issues (all of things mentioned already) without the infantile flaming and baiting that happens elsewhere.  I favor this idea...but I want to be a part of it too!

Gary (prefers "gently used (even if it is a misnomer)" over older.)    ;)
Diagnosed Oct. 2005
10/05:  367 (26.2%), 24556 VL
01/06:  344 (24.6%), 86299 VL
04/06:  374 (22.0%), 87657 VL
05/06:  Began HAART 05/15/06, Combivir/Kaletra
07/06:  361 (27.8%), 1299 VL
10/06:  454 (32.4%), 55 VL
01/07:  499 (38.4%), UD
02/07:  Switched to Atripla 2/8/07
04/07:  566 (37.7%), UD
08/07:  761 (42.3%), UD
06/08:  659 (47.1%), UD
01/09:  613 (43.8%), UD
07/09:  616 (47.4%), UD
01/10:  530 (44.2%), UD
07/10:  636 (48.9%), UD
01/11:  627 (48.2%), UD
07/11:  840 (52.5%), UD
01/12:  920 (51.1%), UD
07/12:  857 (50.4%), 40
10/12:  UD
01/13:  710 (47.3%), UD
07/13:  886 (49.2%), UD
01/14:  985 (46.9%), UD
06/14:  823 (47.2%), UD

Offline J.R.E.

  • Member
  • Posts: 7,159
  • Joined Dec-2003 Living positive, since 1985.
Re: A New Forum: HIV and Aging
« Reply #73 on: April 07, 2007, 04:00:14 PM »
Thanks for clarifying.....I, at least for one of the newbies and I can't be the only one, DO want to be able to learn from the people that have been on the road longer than I have. I DO want to hear the Truth about HIV, and I don't think I'm going to get that from only participating in forums with other Newbies.

Hello Poz,


I was just going to send you a private message and clarify further if it was needed. Intermittant brain fog today !!



Take care--------Ray



Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline StanDaMan

  • Member
  • Posts: 17
Re: A New Forum: HIV and Aging
« Reply #74 on: April 07, 2007, 04:03:51 PM »
As an old old-timer with AIDS I think the idea is great but believe it should include "oldies" of any age, not just those in their late 30s, 40s, etc.   A teenager who caught HIV in 1997 might still be in the 20 something range. 

That said, the majority of us are in late 30s and mostly upward -- I'm past the half-century mark although I always claim to be 43. 

Maybe we could issue a simple test -- anyone who knows the name of the person in my profile pic is admitted to "Long Term Survivors" and those who don't are restricted.    I'm certain the accuracy rate will be on target.

SD
Oliver: Shot at sunrise!
Stanley: I hope it's cloudy tomorrow!

Offline way.out.west

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Re: A New Forum: Long-Term Survivors
« Reply #75 on: April 07, 2007, 04:36:20 PM »
I hope that the forum is inclusive so that people who consider themselves to be older (regardless when they seroconverted) are as welcome as those who may have had HIV for a long time.  Iíve had HIV for less than a year (and donít consider myself to be a long-term HIV survivor), but I am nevertheless coping with issues relating to aging.

I feel uncomfortable with the circus-like atmosphere created by some of the posters in other forums, and oftentimes have difficulty seeing where I fit in.  It would be helpful for me to know that I belonged somewhere.
« Last Edit: April 07, 2007, 04:41:20 PM by way.out.west »

Offline J.R.E.

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Re: A New Forum: HIV and Aging
« Reply #76 on: April 07, 2007, 04:55:04 PM »
  Years since infection should be one marker, but for me an even more appropriate one is years on HAART.  There are many here who were infected 20 years ago but only went on meds in the past 5 years or so.  They're experience (and I'm not trying to diminish them) is very different from those of us who have been on the Toxic Stew for 15 years or more.


Yep, I am one of those that went over 17 years positive, before starting on medication, I have only been on medication, just shy of 3 years 6 month's ----Ray



I'm always surprised about the wide variety of experiences of the Long Time Survivors on this board, and how many avoided any HIV meds for a long, long time.  And then there are some who seemed like Long Term Non-Progressors only to seemingly wake up one day after a decade of good health with HIV, and find themselves with 20 cd4's... though when I've read of this I've always wanted to ask if this happened because they'd not been regularly monitoring their numbers with doctors visits.


Once again, that was me. Slowly got sick, by the time I was hospitalised, had 16 t-cells. Never went to a doctor until 1999. Never had to. Thats my story of denial, which I will be happy to share in detail----Ray

Anyway, this would be what I expect from this prospective new forum section and the kinds of questions I'd love to ask and the kind of stories I'd be interested in sharing and hearing about.




Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline Jody

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Re: A New Forum: Long-Term Survivors
« Reply #77 on: April 07, 2007, 05:17:47 PM »
Thanks Joe for taking the time to post about an issue so important to so many of us...I have learned alot and gotten a great deal of support from folks like you, Moffie, RAB, Alan, Jonathan, Ann, Newt and so many others here.

This year in particular I have really been considering so many of the issues you mention...I am deeply concerned about meds that may soon stop working and facing my own mortality...A few years back I thought I had alot more time left and now I am mentally preparing myself for issues you mention, such as getting older and having to face serious illness and death.

A forum for those of us who are long term survivors would give us a special place to air our concerns and get info and support and comfort...Hopefully this won't further fragment the forums and put too much on the plate, so to speak.

Jody
« Last Edit: April 07, 2007, 09:54:22 PM by Jody »
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Grateful Dead

Offline dtwpuck

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Re: A New Forum: Long-Term Survivors
« Reply #78 on: April 07, 2007, 05:26:25 PM »
While I respect the ideal of this proposal, I think the devil is in the details.  It leaves a bad taste in my mouth when I hear white people complain about black people moving to the suburbs.  So, they move out further into the country rather than learning to integrate.  "But we need to feel safe." 

It's easy enough to create the illusion of safety.  But, it isn't real.  People who fly off the handle because someone disagrees with them are a dime a dozen.  There is no shortage of these people in either the categories "Veteran" and "Newbie" here.   I feel uncomfortable creating a forum where the guidelines for posting in it are, essentially, "don't dare to disagree with me, because my experience makes me wiser." 

I guess it's idealistic of me to expect people of different experiences to get along.  I think it is human nature to place one's own experience as the paradigm by which all things should be judged.  However, it is also the goal of 'support' to set aside one's own prejudice and to learn empathy. 
Floating through the void in the caress of two giant pink lobsters named Esmerelda and Keith.

Offline dtwpuck

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Re: A New Forum: Long-Term Survivors
« Reply #79 on: April 07, 2007, 05:58:15 PM »
While I haven't changed my ideals in regards to empathy... I've been reading some of the other threads.  I am thinking that while I  don't think this new forum is necessary, I am feeling that it probably wouldn't hurt.  I do feel that others feel it is needed, and in that vein, who am I to say what the best venue is for others to receive support.  So, my initial reluctance is essentially withdrawn, although I do think, still, that there is too much "veteran" vs "newbie" argument on this site.
Floating through the void in the caress of two giant pink lobsters named Esmerelda and Keith.

Offline sweetasmeli

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Re: A New Forum: Long-Term Survivors
« Reply #80 on: April 07, 2007, 06:20:36 PM »
When I first saw Joe's proposal I thought it was a good idea. Now reading through all the responses I'm not so sure. There's an uneasy air about the forums lately that smells of division. I'm not sure that's a good thing to be encouraging any further.

As I mentioned in another thread, I do not like to be pigeon-holed.

And I for one am not afraid to hear and read the truth about hiv and aids. Or should I say, I'm no longer afraid. Because yes I used to be. Learning not to be afraid, ignorant or blinkered has been a big part of my journey these last few years, especially since I joined Aidsmeds. And I owe that in huge part to the folk here who have been living with this disease the longest and/or hardest.

I now have friends in my life who are at various stages with this disease and I need/want to know what is happening now and what may lie ahead for their sakes as well as my own. I like to go into all situations in life now with my eyes wide open.

I voiced my support for the women's forum not because I am a woman, but for the sake of those women who want that place to discuss 'women only issues' amongst only women. There was a clear defining factor for creating that forum which was 'being a woman'. I personally would not have a problem with men using the forums too but others did not feel the same about that.

However, as good as the idea for a forum for Long Term Survivors is in theory, the lines are not quite so easy to draw here (as has already been highlighted in many responses).

My concern is that such a forum might very possibly do the one thing that many recent threads have been arguing about: that is, divide the members of Aidsmeds.

Joe and others that have voiced their requests for a 'safe place' are completely right that they should be able to discuss the reality of their experiences without fear of being mocked or dismissed or put down. They are absolutely right about that.

But wouldn't it make more sense for us all to work at ensuring Living With is the forum where we can all feel safe to discuss our 'living with hiv issues'. Young, old, long-term or newly/recently diagnosed? I can't help but think that we should be doing more to work on that, rather than creating more and more forums that will only serve to keep dividing up the members here and pigeon-holing everyone.

I'm still pondering this but that's where my thoughts are so far...I hope I havent offended anyone.

Melia
 
/\___/\       /\__/\
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(,,,_ ,,,)/   (,,,_ ,,,)/ Cats rule!

The difference between cats and dogs is that dogs come when called, whereas cats take a message and get back to you.

Yeia kai hara (health and happiness) to everyone!

Offline thunter34

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Re: A New Forum: Long-Term Survivors
« Reply #81 on: April 07, 2007, 06:33:44 PM »
I see what Melia is saying, but my gut feeling is still to give this a try.  I can't help but think I am going to benefit from this, even though I am still techinically a "newbie" at 36 and two years into diagnosis....even if only from the reading.  I have to admit part of my reason is this:  I've heard so much about how discussions were handled in days gone by, part of me is wanting to see how it goes down here in this forum.  I only have my experience of AM from less than six months.  I think everything from the subject matter to how it is discussed might be a good lesson for me.  So there it is...the completely selfish and non-benevolent portion of my motivation in supporting it.  I do have less selfish reasons that I think most people would already surmise, but I figured I'd go ahead and air that side of it, too.
AIDS isn't for sissies.

Offline Joe K

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Re: A New Forum: Long-Term Survivors
« Reply #82 on: April 07, 2007, 07:16:15 PM »
Melia,

While you make some very valid points, the sad fact is that we are unable to maintain the Living With Forum in terms of all members feeling comfortable and or welcome to post their needs, no matter how dark those may be.  I see this as an opportunity for the LTS to return to this forum, after all it was many of us who have supported this forum through the years and we have simply grown too big for one forum to deal with all the living aspects of HIV.

I would expect there will be so much more information shared and everyone is welcome to read and post in the forum, all we ask for is respect and support in return.  You have no idea the wealth of history that our LTSers posses and they need a place to do exactly that.  This is one of those times when I ask you to not concentrate on what you perceive us to be losing, but rather look at all that we will be gaining.  The Living with forum can continue to be the "main entry" point if you will and some of us will not have to worry about our horror stories being the ones that some poor newbie has the misfortune to click on first, when they enter the current Living forum.  Think about that one because we will never know how many newbies get scared right out of these forums (when they read some posts), which ironically used to be the complaint about the Living forum, in that many people thought it was too dark.

Most important is I ask that you reread the posts, from some posters who you have not seen in a long time and hear what they ask.  If anyone knows the value of unconditional support it is those of us who survived this scourge called HIV.  We are not asking to take from the forums, we want to give back to those LTSers, without whom many of the current drugs and treatments would not exist and Tim is right, this is one of those times when I must be selfish for myself and all LTSers.

You may recognize this comment from another struggle, but we LTSers do not want special treatment, just equal treatment and we believe that can be best accomplished with a new forum.  As I said, view this as another information source and I expect that it will only serve to strengthen and continue the diversity of these forums.

Finally, give us LTSers a chance to show you all how a forum can really run, when the members insist on the proper respect and support of ALL THE FORUM PARTICIPANTS.  This is not a reflection on our moderators, just the sad reality of such a large site.  We have done it before and I know we can do it again.
« Last Edit: April 07, 2007, 07:23:59 PM by killfoile »

Offline jkinatl2

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Re: A New Forum: Long-Term Survivors
« Reply #83 on: April 07, 2007, 07:22:01 PM »
While I totally see your point, Melia, I submit that the divisiveness ship has sailed. It's elegant smokestacks have dotted the horizon with trails of soot, and the passengers have stopped waving from the upper decks to weeping families ashore.

I can honestly say that I have better things to do with my energy and writing than "take back" the LW forum. Look through this thread. People like Alanbama, Jody, and of course Joe have posted here. When's the last time you saw those names in a discussion thread? Whats the real likelihood of the LW forum coming back around to addressing their needs, particularly when certain TO's expire?

People who are physically weak and emotionally drained need a place where they don't have to combat bullies. And let's be honest here, this is NOT a newbie versus old-timer issue. We can call the forum "long term survivors" but in reality we are distancing ourselves from the slew of internet trolling that has shamefully silenced many members who do not come here begging for a fight or looking to prove immaculate infection.

What I hope we can accomplish is to enter into discussions, share experiences and support and strength and hope. Without personal attacks or hijacking or abuse. A grown-up's table, as it were.

Are there Long Term Survivors who are drug addicted and/or shrilly hysterical and/or unbalanced? Oh yeah. But it seems that with the explosion of popularity that AIDSMEDS has undergone, we have attracted an element of internet trolling that we simply did not have before. And though we might share a commonality in being HIV positive, not everyone who comes here does so for information and discussion and mutual support. Some folks are already so desensitized to human interaction that they simply cannot handle themselves in a respectful manner given the relative anonynity of the online experience.

What I'd like to see is a forum with perhaps less tolerance for abusive behavior, with more sensitivity to the needs of the sick and the drug experienced and those grappling with the less-than-manageable aspects of HIV and AIDS. And as much as that forum needs to minimize abusive behavior, it should also be a place where we can share our experiences without worrying whether a newly diagnosed or asymptomatic person will freak out or challenge our paradigm based on a dearth of experience and limited understanding of this disease.

Am I being overly optimistic that this can be a success? Perhaps. But we need a grownups table. And Living With simply isn't that, anymore. I see it as more of a lobby at this juncture, where people with often disparate views and directions can meet and mingle. But some of us are facing a terminal illness, a chronic disabling disease that requires a different approach.

Im rabling so I'll stop. I still think this is a good idea. And if the alternative is to not hear from the likes of Joe or Jody or Alan, then I can tolerate the division. It's a trade I will gladly make to once again enter in thoughtful discussions with these gentle good people.

"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 Basquo

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Re: A New Forum: Long-Term Survivors
« Reply #84 on: April 07, 2007, 07:35:26 PM »
Would it be such a terrible thing if the forums were to become more divisive? And would that really happen? I propose we look at a few historical examples:

The AM Gatherings forum:  it's had a ton of traffic, and there was some drama at a point, but for the most part, the posts come from people who are attending the AMGs or those who are considering it.

The Positive Women forum: it's brand new, and a bit of an adjustment, but for the most part, it's going to belong to that group for which it's intended.  I would hope that if my mom or sister were having a female-specific health problem, I could learn from what I'll read there.  Reading's free.

So many of you have taken the time to post your praise, your concerns, and your ideas for how this forum would work to help us all.  Thank you for making this something to look forward to.

I too have concerns about my own participation, but I think I'll see how this all plays out. Or maybe I'll PM Joe, as he is a most approachable guy.  I know this from experience, experience I woud never have if it wasn't for this site!

Best, and Love, to all,
Creighton

Offline pozinbama

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Re: A New Forum: Long-Term Survivors
« Reply #85 on: April 07, 2007, 07:55:03 PM »
I would expect there will be so much more information shared and everyone is welcome to read and post in the forum, all we ask for is respect and support in return.  You have no idea the wealth of history that our LTSers posses and they need a place to do exactly that. 

I say Hooray if the new forum really would be inclusive of all still. I know there has been mention of it being locked, and I'm not quite sure what that means. My fear is that I wouldn't be able to come and learn from The Elders. Abusive behavior shouldn't be tolerated in any forums and, in my opinion, can EASILY by stopped with the help of the moderators. With the size of the membership maybe they just need to be more severe than they were in the past?

Offline Miss Philicia

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Re: A New Forum: Long-Term Survivors
« Reply #86 on: April 07, 2007, 08:34:53 PM »
The Living with forum can continue to be the "main entry" point if you will and some of us will not have to worry about our horror stories being the ones that some poor newbie has the misfortune to click on first, when they enter the current Living forum.  Think about that one because we will never know how many newbies get scared right out of these forums (when they read some posts), which ironically used to be the complaint about the Living forum, in that many people thought it was too dark.

Definitely the primary point, I think.  Thanks for writing that.
"Iíve slept with enough men to know that Iím not gay"

Offline GoodMatchHawaiiRetreat

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Re: A New Forum: Long-Term Survivors
« Reply #87 on: April 07, 2007, 09:08:11 PM »
Hi All.  Long term survivor here - 22+ years.  New to this site.
I'm posting comments in the "Long Term Survior" thread, but from reading the posts which are all about the 'process' of setting up a site I'm unclear as to whether this should still be discussion about the site or it "is" the site and open to posting.
Love the concept of Long Term Survivor site.  Emphasis on Survivor.  I belive the reason I've been poz for 22+ years without OI's or serious complications is that I believe I am a "survior". 
We need positive reinforcement and collective encouragement to focus on health, healing, strength and surviving.
  At a recent presentation on new meds the presenter said that with the new meds available most all people with HIV will be able to reduce their viral loads to undetectable.  The issues then will be adjusting to coping with living rather than the threat of death.   
   Science recently is discovering the incredible power of our minds and attitudes in healing.  Whatever we focus on we create more of.  I choose to focus on health, life, friendship, love and encourage poz brothers here to do the same.

Offline AlanBama

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Re: A New Forum: Long-Term Survivors
« Reply #88 on: April 07, 2007, 09:24:26 PM »
Hello G.M.H.R. and welcome to the forums!

This is not the "long term survivor" forum, but merely a thread discussing the possibility of establishing such a forum.  Many of us hope that that will become a reality.

Welcome to the "Living With HIV" forum!

Alan
Poz since 1987
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline J.R.E.

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Re: A New Forum: Long-Term Survivors
« Reply #89 on: April 07, 2007, 09:31:42 PM »
Hello Goodmatch,

Welcome to the site. Joe, ( killfoile) the originator of this thread, is suggesting to the moderators the possibility of starting a topic forum ( within these forums ) for us long term survivors. This thread is currently taking responses to Joe's post, and we are basically going to see, where this may lead.


We need positive reinforcement and collective encouragement to focus on health, healing, strength and surviving.
 

Which is precisely why this thread has been created.., to see if we can get a forum created directly for this purpose, for those of us living with HIV a very long time.



Take care------Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline Jeff64

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Re: A New Forum: Long-Term Survivors
« Reply #90 on: April 07, 2007, 10:38:58 PM »
Joe,
Exactly what is the critera to be a part of this proposed new forum?

I am 43 and worried about my future...

Do I qualify?

Jeff

Offline Joe K

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Re: A New Forum: Long-Term Survivors
« Reply #91 on: April 07, 2007, 11:20:48 PM »
I am afraid that too many posters are getting the wrong impression about the proposed new forum, so let me try it this way.  I want you to go back and read through this entire thread and you will notice something missing: disrespect.  This thread used to what most of the threads in the Living with forum used to be like, before our own popularity exposed us to the true diversity of the Internet.  The forum being proposed is so we can recreate a safe and secure forum where all topics are fair game, with the only rule being that you treat other posters as you would have them treat you.

When I reference the Long-termers it is because of both the need we possess for this forum, but also our ability to monitor and maintain a safe and nurturing atmosphere.  We have no intention of excluding anyone, nor would the forum be locked, again BECAUSE ALL VIEWPOINTS ARE WELCOME, we just ask that you leave the attitude at the door.  It really is that simple.  We simply want to create a forum where all LTSers will feel safe in seeking support.

I suppose this is one of those times that I ask that you trust our judgement in the need and proposed structure of the new forum and assuming it becomes reality, I ask that you withhold judgement on the forum, until it is up and running.  We create new forums, when the need arises and now we are asking you to support it for the LTSers amongst us.

Believe me when I say that I understand how change can be unsettling, yet the one hallmark that has always existed in the HIV community is its ability to adapt as the need arises.  We see a need, we've hopefully made a good case and we ask that you support the new forum.  I promise you will not be sorry.
« Last Edit: April 07, 2007, 11:26:16 PM by killfoile »

Offline milker

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Re: A New Forum: Long-Term Survivors
« Reply #92 on: April 07, 2007, 11:27:22 PM »
This is post #92. I think it's clear that there is a need for this forum. I'm a bit surprised that none of the moderators have expressed their view on this yet. Do we have to hit 100 before it becomes something that the site owner and the moderators take notice?

Milker (a bit annoyed)
mid-dec: stupid ass
mid-jan: seroconversion
mid-feb: poz
mar 07: cd4 432 (35%) vl 54000
may 07: cd4 399 (28%) vl 27760
jul 07: cd4 403 (26%) vl 99241
oct 07: cd4 353 (24%) vl 29993
jan 08: cd4 332 (26%) vl 33308
mar 08: cd4 392 (23%) vl 75548
jun 08: cd4 325 (27%) vl 45880
oct 08: cd4 197 (20%) vl 154000 <== aids diagnosis
nov 2 08 start Atripla
nov 30 08: cd4 478 (23%) vl 1880 !!!!!!!!!!!!!!!!!!!!!!!!!!
feb 19 09: cd4 398 (24%) vl 430 getting there!
apr 23 09: cd4 604 (29%) vl 50 woohoo :D :D
jul 30 09: cd4 512 (29%) vl undetectable :D :D
may 27 10: cd4 655 (32%) vl undetectable :D :D

Now accepting applications from blowjob ninjasô

Offline allopathicholistic

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Re: A New Forum: Long-Term Survivors
« Reply #93 on: April 07, 2007, 11:37:16 PM »
Did you see #48?

Offline milker

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Re: A New Forum: Long-Term Survivors
« Reply #94 on: April 08, 2007, 12:07:03 AM »
Did you see #48?

Yes. It's clear that this is a request for a forum for two purposes:

1) people that have lived with HIV for 10+ years.
2) people with HIV that need help preparing for the end.

I think both are very important topics. I'm not sure 2) is specific to HIV but it's important.

Milker.
mid-dec: stupid ass
mid-jan: seroconversion
mid-feb: poz
mar 07: cd4 432 (35%) vl 54000
may 07: cd4 399 (28%) vl 27760
jul 07: cd4 403 (26%) vl 99241
oct 07: cd4 353 (24%) vl 29993
jan 08: cd4 332 (26%) vl 33308
mar 08: cd4 392 (23%) vl 75548
jun 08: cd4 325 (27%) vl 45880
oct 08: cd4 197 (20%) vl 154000 <== aids diagnosis
nov 2 08 start Atripla
nov 30 08: cd4 478 (23%) vl 1880 !!!!!!!!!!!!!!!!!!!!!!!!!!
feb 19 09: cd4 398 (24%) vl 430 getting there!
apr 23 09: cd4 604 (29%) vl 50 woohoo :D :D
jul 30 09: cd4 512 (29%) vl undetectable :D :D
may 27 10: cd4 655 (32%) vl undetectable :D :D

Now accepting applications from blowjob ninjasô

Offline thunter34

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Re: A New Forum: Long-Term Survivors
« Reply #95 on: April 08, 2007, 12:09:56 AM »
Yes. It's clear that this is a request for a forum for two purposes:

1) people that have lived with HIV for 10+ years.
2) people with HIV that need help preparing for the end.

I think both are very important topics. I'm not sure 2) is specific to HIV but it's important.

Milker.

I'd recommend another peek at post 91 for more on the purpose of the proposed forum.  I think a new (or revived) approach to how discussions are handled on the forums figures into its purpose.
AIDS isn't for sissies.

Offline DingoBoi

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Re: A New Forum: Long-Term Survivors
« Reply #96 on: April 08, 2007, 12:36:50 AM »
reading some of the comments here, this seems like it will be a rather 'depressing' forum.

I don't say that disparigingly, but it kinda seems more like a 'dying with hiv' forum.  Not that I don't think it's needed, it's just very grim.

very grim indeed.

and that makes the dingo sad.

Offline milker

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Re: A New Forum: Long-Term Survivors
« Reply #97 on: April 08, 2007, 12:48:42 AM »

and that makes the dingo sad.

It's interesting because that made me sad too. Initially I thought it was a great idea, and I still think it is when I read killfoile's post. I think killfoile has a very legitimate request, and I will totally back it up. However, I agree with Dingo, this forum sounds like it's not gonna be a fun one. I understand that this is not fun, but Dingo is warning you that this may be a seriously depressing forum. If you're ok for it, then be it. As a newbie I know i'm not ready for a depressing forum. I truly need the experience of the long timers, and now i'm not sure how we can get this experience and help from them. Does this make any sense?

Milker.
mid-dec: stupid ass
mid-jan: seroconversion
mid-feb: poz
mar 07: cd4 432 (35%) vl 54000
may 07: cd4 399 (28%) vl 27760
jul 07: cd4 403 (26%) vl 99241
oct 07: cd4 353 (24%) vl 29993
jan 08: cd4 332 (26%) vl 33308
mar 08: cd4 392 (23%) vl 75548
jun 08: cd4 325 (27%) vl 45880
oct 08: cd4 197 (20%) vl 154000 <== aids diagnosis
nov 2 08 start Atripla
nov 30 08: cd4 478 (23%) vl 1880 !!!!!!!!!!!!!!!!!!!!!!!!!!
feb 19 09: cd4 398 (24%) vl 430 getting there!
apr 23 09: cd4 604 (29%) vl 50 woohoo :D :D
jul 30 09: cd4 512 (29%) vl undetectable :D :D
may 27 10: cd4 655 (32%) vl undetectable :D :D

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Offline Miss Philicia

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  • Posts: 24,092
  • celebrity poster, faker & poser
Re: A New Forum: Long-Term Survivors
« Reply #98 on: April 08, 2007, 01:00:22 AM »
Oh please, it doesn't necessarily mean that by any means.  There are plenty of Long Termers here that seem to have higher cd4 counts than the non-Long Termers.  I'm sure it will be a rather mixed bag.

Anyway, why would you worry about getting depressed from the subject matter?  We're talking about HIV in this entire message board anyway, not decoupage.
"Iíve slept with enough men to know that Iím not gay"

Offline jkinatl2

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  • Posts: 6,007
  • Doo. Dah. Dipp-ity.
Re: A New Forum: Long-Term Survivors
« Reply #99 on: April 08, 2007, 01:20:02 AM »
Sorry if my disease makes Baby Jeebus cry.

There needs to be a forum for that tho. Even if the sweet honeys get ill from the read.

Seriously. 

"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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