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Author Topic: A New Forum: Long-Term Survivors  (Read 33482 times)

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Offline Joe K

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A New Forum: Long-Term Survivors
« on: April 06, 2007, 12:18:05 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.
« Last Edit: April 07, 2007, 04:11:30 PM by killfoile »

Offline Moffie65

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Re: A New Forum: Long-Term Survivors
« Reply #1 on: April 06, 2007, 12:24:38 PM »
  I want and need these forums and since we have the ability to adapt, I respectfully submit my idea for consideration.

Geez Joe,

You go away for awhile, and then come back with this......  Me thinks your testicles have once again grown to the size of a Volkswagen.

Through the tears that your post brought to this way too sensitive survivor, I found this one last statement that really sums it up for me also.  As a matter of fact, this suggestion has been in my brain for about a month, but I was unable to compose a post so effective as yours is.

THANK YOU JOE!

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 thunter34

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Re: A New Forum: Long-Term Survivors
« Reply #2 on: April 06, 2007, 12:26:31 PM »
Holy Smokes!  I just came to a similar idea in a new thread I posted!  ("Of Man Things and Lady Places")  I wondered at the bottom of my thread if there might be a need for what I called HIV and Aging...in other words, being a long-term survivor and all that entails.  The shaping of life experience from that, plus the combination of ordinary health situations from aging with the added weight of HIV.

I'd take that as a sign it is worth investigating.
AIDS isn't for sissies.

Offline shepsmom

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Re: A New Forum: Long-Term Survivors
« Reply #3 on: April 06, 2007, 12:26:51 PM »
great idea!


Offline AlanBama

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Re: A New Forum: Long-Term Survivors
« Reply #4 on: April 06, 2007, 12:27:22 PM »
Here here, Joe!   Thank you for saying exactly what I have been thinking for quite some time now.

So many issues seem to involve the "newbies vs. oldies" mess, so let us who have the issues that 10, 15, or 20+ years of liiving with AIDS brings have our own forum, where we can discuss it freely.

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

Offline milker

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Re: A New Forum: Long-Term Survivors
« Reply #5 on: April 06, 2007, 12:29:51 PM »
As a newbie I think it's a very good idea and I will surely read this new forum with much interest because it's your experience that will help me going through the rest of my life. I just hope that you let newbie ask questions to you guys as long as they are related to your long experience.

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 ademas

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Re: A New Forum: HIV and Aging
« Reply #6 on: April 06, 2007, 12:32:30 PM »
It's crossed my mind before, too, Joe.
I think it's a great idea.

Offline Joe K

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Re: A New Forum: HIV and Aging
« Reply #7 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.

Offline RapidRod

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Re: A New Forum: HIV and Aging
« Reply #8 on: April 06, 2007, 12:39:40 PM »
I think this is an excellent idea. Moffie, pass the prunes please. ;)

Offline Lis

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Re: A New Forum: HIV and Aging
« Reply #9 on: April 06, 2007, 12:40:05 PM »
Hi Joe, Ive really missed you..

I think that your forum idea is great!!
poz 1986....

Offline keyite

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Re: A New Forum: HIV and Aging
« Reply #10 on: April 06, 2007, 01:00:20 PM »
As a newbie I'm here to learn from other newbies and long-term survivors alike - I would be sad to see further division between the two sides. But ultimately I would be even more sad to see long-term survivors leave because they feel unwelcome or unsafe. On that basis I'd support the proposal.

Dan J.

  • Guest
Re: A New Forum: HIV and Aging
« Reply #11 on: April 06, 2007, 01:03:20 PM »
Great idea Joe. There is  quite a bit of info on the web about this topic. Here is one of the better links I found.

http://www.hivoverfifty.org/

also

http://www.uic.edu/sph/aids/index.htm Chatting About Aids And Aging.

also

http://www.thirdage.com/features/healthy/aids/index.html A 4 page article on Aids and aging and the issues this secment of the population faces.
« Last Edit: April 06, 2007, 01:05:31 PM by Dan J. »

Offline allanq

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Re: A New Forum: HIV and Aging
« Reply #12 on: April 06, 2007, 01:07:58 PM »
Joe, your suggestion comes at a particularly appropriate time for me, since today is my 59th birthday. I think your idea for a forum on HIV and Aging is a very good one. I just hope that people wouldn't feel that they have to post in a particular forum because of their age or gender.

Allan
Top (Breakfast): Prezista, Norvir, Isentress, Zoloft (2), Glyburide (2), Aspirin
Bottom right (Dinner): Prezista, Norvir, Isentress
Bottom left (Bedtime): Sustiva, Trazodone (2), Lipitor, Septra (no longer taking this)
Center: Alprazolam (Xanax)
Not shown: various vitamins & supplements

Offline Joe K

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Re: A New Forum: HIV and Aging
« Reply #13 on: April 06, 2007, 01:26:21 PM »
Allan, my proposing a new forum is so we can have a place to talk about the challenges of HIV with advancing age.  I would hope that everyone would feel welcome, but they would respect the fact that this forum would probably be the "darkest" if you will, of all the forums.

I believe we need a forum where we can really express our issues and those include loss of quality of life, increasing illness and preparation for our own passing.  I have real issues that only long-termers can understand and I want and need their help and that is why I asked for a new forum.

Offline woodshere

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Re: A New Forum: HIV and Aging
« Reply #14 on: April 06, 2007, 01:37:41 PM »
I think this is a wonderful idea.  I recently went on a retreat.  One of the guys I went with was diagnosed in 1985 said that the retreat was geared way to much to newer pozzies and wouldn't it be nice to have a retreat for long term survivors since his problems were far different than mine.

Of course my question regards respect.  Would someone who shows disrespect in a Living With thread have enough class to stay out of the HIV and Aging thread.  I would hope so, but then you are dealing with a callous individual.

Good Luck with this Joe!
Woods
"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it."   Nelson Mandela

Offline Bucko

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Re: A New Forum: HIV and Aging
« Reply #15 on: April 06, 2007, 02:01:01 PM »
This is appropriate too, because there are different stages of aging that everyone will (hopefully) go through and much wisdom can be shared.

I rarely post in the newly-infected forum because I'm not sure how helpful I'd really be.

I don't see this as a balkanization of AIDSmeds, just an overdue tweaking of the original concept.

Brent
(Who is, after all, 47)
Blessed with brains, talent and gorgeous tits.

The revolutionary smart set reads The Spin Cycle at least once every day.

Blathering on AIDSmeds since 2005, provocative from birth

Offline Miss Philicia

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Re: A New Forum: HIV and Aging
« Reply #16 on: April 06, 2007, 02:02:10 PM »
Thanks Joe.  As someone who is currently in a "Treatment Experienced/Long Termer" support group here in Philadelphia I'm actually surprised that such a section in these fora didn't already exist, so I totally support this.

Now, how would it be defined in terms of years?  While I was not diagnosed until 1993, based on my lab work then they estimate I was infected within an average of five years earlier... or 1988.  Theoretically I'm a year away from my 20th birthday!
"Iíve slept with enough men to know that Iím not gay"

Offline Joe K

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Re: A New Forum: HIV and Aging
« Reply #17 on: April 06, 2007, 02:15:15 PM »
Woods, you bring up a good point about respecting posts, but from my perspective I do not have the will, nor the time to deal with insensitive people and I would suspect that any such intrusion would be met with the SILENCE that it deserves.  Nothing grates the trolls more than when you ignore them.

Philly, I do not believe that physical age  will be the issue in the forum, as opposed to the number of years infected and the content.  Just like the newly infected have their issues, those of us aging with HIV (at any age) have our own issues.  I would hope the forum would attract those who have been marginalized by the other forums.  It is very hard to  bear your soul while some clod tells you how insignificant or important your experiences are.

Given who I expect to frequent this forum, there will be little patience for those who only seek to disrupt the forum.  I do not have the time for bullshit anymore and anyone who will not respect that will find a very cold reception indeed.
« Last Edit: April 06, 2007, 02:22:53 PM by killfoile »

Offline thunter34

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Re: A New Forum: HIV and Aging
« Reply #18 on: April 06, 2007, 02:17:34 PM »
If this can be a tool to bring out more voices from the long-termers, I am ALL FOR IT.  Some of the posts I have read from the old guard has literally stopped me in my tracks.  There is so much to learn from you folks.  

I gotta go for now.  Funeral to get to.  Look forward to reading more of this later tonight when I return.  I see several posts in response to it already...that's telling, eh?

Tim

(who loves it when things like this get rumbling)
AIDS isn't for sissies.

Offline ACinKC

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Re: A New Forum: HIV and Aging
« Reply #19 on: April 06, 2007, 02:27:32 PM »
This is one of the first constructive things that has come out of all of this.  I think if it encourages more to post then go for it.
LIFE is not a race to the grave with the intention of arriving safely
in a pretty and well-preserved body, but, rather to skid in broadside,
thoroughly used up, totally worn out, and loudly proclaiming--WOW! WHAT A
RIDE!!!

Offline Christine

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Re: A New Forum: HIV and Aging
« Reply #20 on: April 06, 2007, 03:17:48 PM »
I think it is a good idea. There is a huge difference between being newly infected, and infected for 10-20 years. I do think it is very sad that some newly diagnosed members can't recognize how much knowledge and wisdom can be gained from people who have lived with hiv for 20+ years.

I fear that history is doomed to repeat itself. I fear that the recent feelings of hiv being manageable, and the perceived safety, and long term usefullness of the new meds can lead to a sense of complacency, and eventual reckless behavior for the next generation.

A long term survivor can teach one what the future may hold for a newly diagnosed person; how to deal with those hardships- physically, mentally and spiritually.

For me, it is not a matter of hope. It is a matter of preparing oneself for what the future may hold. Pray for the best, prepare for the worst.

Just my two cents.

Christine
Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline Miss Philicia

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Re: A New Forum: HIV and Aging
« Reply #21 on: April 06, 2007, 03:38:44 PM »
Well, I've long been of the mind that once you cross the 10 year mark, certainly if you started at diagnosis hovering around the legal AIDS lab number, you begin having a whole host of ancillary issues as well as intensified mental ones.  Or at least that's been my experience.  I agree with killfoile that we need a section that maintains a level of seriousness grounded in good science and personal experience, separate from much of the kii-kii-ing in other sections (and that's not being judgmental as I surely kii-kii with the best of them) but in this hopefully to-be-approved Old Timers section we can explore things that haven't been fully discussed elsewhere.

I look forward to being an active participant, as I don't often share all the ins and outs of what I've endured for the past 15 years.  Some of it is often difficult to drudge up, though at other times I also realize I have at times had it much easier than others (though not always... just really currently... but only on paper, NOT in my head!).

ps:  How have you been doing Christine?  You live in Harrisburg, don't you?  I know that's hours away from me but perhaps one day our paths can cross and we can meet.

xx
David
"Iíve slept with enough men to know that Iím not gay"

Offline bear60

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Re: A New Forum: HIV and Aging
« Reply #22 on: April 06, 2007, 03:38:56 PM »
I turned 63 today. HIV and Aging is a constant issue for me. As is:
HIV and Retirement.
Poz Bear Type in Philadelphia

Offline StrongGuy

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Re: A New Forum: HIV and Aging
« Reply #23 on: April 06, 2007, 04:18:57 PM »
I think it's a good idea insofar as the mission and posting parameters are clearly hashed out. 

By this I mean labeling it "aging" is way too vague and I don't think it's going to satisfy what the intended goal for some are. I'm in my seventh and soon will be entering my 8th year and I have a much different experience and view point than some others but I'm sure as heck not a newbie but in two years would I be "aging?"

I think drawing the line will be difficult because just because your "aging" doesn't mean everyone shares the same perspective or has similar needs. I've seen people diagnosed two years relate more with those diagnosed 15 years and on the flip-side I've seen those diagnosed 12 years relate more with those diagnosed 3 years.

Is it years living with the virus? Experience with the virus? A Certain viewpoint? Or an age range (anyone over 45?). What is a "very long time" and how is it defined? Those are areas that would be need to be defined clearly.

I think it's a great idea in theory - just needs to be defined as to what its mission is and who exactly it is for (age, persepective, years with virus, viewpoint, or health condition, etc.?). Otherwise, I could see it getting very messy.

I hope it gets fleshed out and works out...

Best,
Mike :)




« Last Edit: April 06, 2007, 04:46:43 PM by StrongGuy »
"Get your medical advice from Doctors or medical professionals who you trust and know your history."

"Beware of the fortune teller doom and gloomers who seek to bring you down and are only looking for company, purpose and validation - not your best physical/mental interests."

"You know you all are saying that this is incurable. When the real thing you should be saying is it's not curable at the present time' because as we know, the great strides we've made in medicine." - Elizabeth Edwards

Offline DanielMark

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Re: A New Forum: HIV and Aging
« Reply #24 on: April 06, 2007, 04:34:12 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.

An excellent idea! You've got my vote.

Daniel

(Diagnosed in 1988)
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline J.R.E.

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Re: A New Forum: HIV and Aging
« Reply #25 on: April 06, 2007, 04:44:18 PM »
Hello Joe,


I am completely for this !! I will be 56 years old ( young) this year, with 22 years of living with this virus. I had touched on this, ever so lightly in the other thread,.... That perhaps a forum "HIV veterans" for those of us that are dealing with the normal aging process,Those of us getting up there in our years besides the HIV issues. A more mature forum..  Something on that order.....



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 Dachshund

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Re: A New Forum: HIV and Aging
« Reply #26 on: April 06, 2007, 04:50:44 PM »
Count this geezer (55) in...with each ailment I always wonder is it aids or age?

Offline Ihavehope

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Re: A New Forum: HIV and Aging
« Reply #27 on: April 06, 2007, 04:53:13 PM »
i think it is a terrific idea.

Kudos to those whose idea it was.

Al
Infected: April 2005
12/6/06 - Diagnosed HIV positive
12/19/06 - CD4 = 240  22% VL = 26,300
1/4/07 - CD4 = 200 16% VL = ?
2/9/07 = Started Kaletra/Truvada
3/13/07 = CD4 = 386 22% VL ?

Offline Joe K

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Re: A New Forum: HIV and Aging
« Reply #28 on: April 06, 2007, 05:26:06 PM »
I am pleased to see so much support and for StongGuy (Mike) there will be no criteria for posting in the forum, just the knowledge that this forum will allow people to address the darkest and most challenging aspects of their life, without the fear of being ridiculed.  Actually Ray said it very well, when he mentioned a more "mature" type of forum.

This is not an attempt to separate anyone, just create a forum that will embrace those of us, who like others here, have unique challenges due to our long history with HIV infection and our increasing age.

A safe forum, like most of these used to be, before the sites popularity over powered some of us. 

I need to talk with someone and describe what is happening to me and the only ones I can do that are with those who have lived with HIV for decades.  Sadly many of those people have been driven away and for me, it really boils down to a simple wish.

I want a forum where Lis and Nancy and Tim (Moffie) and Jonathan will feel welcome, one where we can agree to disagree and treat our issues with the respect and seriousness they deserve.  It breaks my heart everytime I see someone come here with real issues (sorry, but there are degrees that warrant increased attention) only to have their issues and feelings trivialized by some posters.  And we cannot, nor should we, insist that the Moderators monitor every forum.

It is time to meet a very real need on these forums and I believe that if we share the vision for what this forum will be, it will become just that, because all of your posts, especially yours Tim (Moffie) express the same need, if not in the same words.

We deserve the chance to create a new forum and I believe that we are on the right track.  Again, this is not about exclusion, rather inclusion by once again expressing the diversity of these forums and needs by creating a new forum.

Offline anniebc

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Re: A New Forum: HIV and Aging
« Reply #29 on: April 06, 2007, 05:45:03 PM »
Dearest Joe

I wish I had more time to write but Easter and family are keeping me busy..I just wanted to say I'm behind you 100%.

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

Offline aztecan

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Re: A New Forum: HIV and Aging
« Reply #30 on: April 06, 2007, 05:57:30 PM »
Hey Joe,

I think it is a great idea. While I appreciate the concerns of those who are more recently infected, they often don't apply to me.

I will be celebrating my 50th birthday in a few months and have lived 22 years with the bug. I am having a number of health issues at the moment that I would like to discuss, but don't because it simply is out of place in the "Living With" forum.

I'm behind you all the way.

Edited to add: Its just coincidence, but I note POZ magazine just did a spread about AIDS and Aging in this month's edition.

HUGS,

Mark
« Last Edit: April 06, 2007, 06:27:12 PM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline jkinatl2

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Re: A New Forum: HIV and Aging
« Reply #31 on: April 06, 2007, 06:02:00 PM »
While I honestly prefer the title "HIV Veterans" I would be happy to post in any forum that is relatively free of infantile internet trolling. If that makes me aged or aging, then so be it :)

Joe, if this works, you might just have saved this place.

"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 newt

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Re: A New Forum: HIV and Aging
« Reply #32 on: April 06, 2007, 06:12:57 PM »
Yes
"The object is to be a well patient, not a good patient"

Offline penguin

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Re: A New Forum: HIV and Aging
« Reply #33 on: April 06, 2007, 06:25:03 PM »
occasionally, I think there are too many (sub)forums. It gets difficult to keep up with them, to remember where you're supposed to post which issues.

While I'm deffo not over 50, other times, yes there are things I would perhaps like to write about, which somehow don't seem to quite fit the mood in the existing spaceÖlike having more spare change in my pockets than tcells, or incontinence, or dodgy organ function, or crushing, breath stealing fatigue. Or maybe just those moments in single digit hours, when things get kinda overwhelming & bleak.
I could, I guess, post all those things here. I just don't, for whatever reason. probably a British Thing  :)

so yes, a good idea.

kate

Offline DingoBoi

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Re: A New Forum: HIV and Aging
« Reply #34 on: April 06, 2007, 06:26:35 PM »
I'm in favor of a 'geezer' forum.   Some of my favorite people here are geezers which is just a fun word to say.  I learn alot too from those different perspectives.

Offline OzPaul

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Re: A New Forum: HIV and Aging
« Reply #35 on: April 06, 2007, 06:27:31 PM »
Great idea Joe !

Yes

Offline Dachshund

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Re: A New Forum: HIV and Aging
« Reply #36 on: April 06, 2007, 06:29:28 PM »
occasionally, I think there are too many (sub)forums. It gets difficult to keep up with them, to remember where you're supposed to post which issues.

While I'm deffo not over 50, other times, yes there are things I would perhaps like to write about, which somehow don't seem to quite fit the mood in the existing spaceÖlike having more spare change in my pockets than tcells, or incontinence, or dodgy organ function, or crushing, breath stealing fatigue. Or maybe just those moments in single digit hours, when things get kinda overwhelming & bleak.
I could, I guess, post all those things here. I just don't, for whatever reason. probably a British Thing  :)

so yes, a good idea.

kate

You are your own wonderful, sweet, darling little lesbian...a forum in itself and I love you for it.

Offline Just John

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Re: A New Forum: HIV and Aging
« Reply #37 on: April 06, 2007, 06:41:21 PM »
Yep, with you 100%.

John.
Some cause happiness wherever they go; others, whenever they go.

Offline AlanBama

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Re: A New Forum: HIV and Aging
« Reply #38 on: April 06, 2007, 07:49:34 PM »
I am anxious to know what Peter, Tim, Andy and Ann's thoughts on this are...

I agree with Jonathan, I prefer the term "HIV Veteran".

Thanks again Joe, for making this proposal.

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

Offline manchesteruk

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Re: A New Forum: HIV and Aging
« Reply #39 on: April 06, 2007, 08:03:29 PM »
First off I have to say I wish that this didn't have to be the case.  When I joined 18 months ago this just wasn't an issue I'm not sure what exactly has changed but there seems to be a lot of people now who seem far too willing to dismiss the views of longterm survivors as out of date.  I honestly can't think of anything more ridiculous, maybe it's just easier for some people to not face the reality of HIV I don't know.  The fact that a lot of the longterm survivors don't post so much anymore hasn't gone unnoticed on me and if a new forum would help reverse that I'm all for it definitely!

Chris
Diagnosed 11/05

"Life is too important to be taken seriously" Oscar Wilde

Offline Nico

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Re: A New Forum: HIV and Aging
« Reply #40 on: April 06, 2007, 08:12:27 PM »
Joe,
A big thanks.  I echo the other longtimers, geezers and veterans.  I only came out a few months ago on this board, but have been doing the AIDS thing since '89.  I think a new forum might help regroup what was the spirit of this board in the past.  I only say this from the posts I have read since joining.

Being the ripe old age of 43, I fall in the old farts club quite nicely. Hope it becomes a reality.

Rog
Poz since 1990.

Offline Miss Philicia

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Re: A New Forum: HIV and Aging
« Reply #41 on: April 06, 2007, 10:00:18 PM »
I'm 42 and I refuse to consider myself and old fart!
"Iíve slept with enough men to know that Iím not gay"

Offline Robert

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Re: A New Forum: HIV and Aging
« Reply #42 on: April 06, 2007, 11:00:30 PM »
joe and thunter...

thanks a lot for this.  Like Ray, my posts have gone to the wayside and I've been sitting, bidding my time, hoping to get back on track.

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

(who wonders where all the cum went)



..........

Offline thunter34

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Re: A New Forum: HIV and Aging
« Reply #43 on: April 06, 2007, 11:24:02 PM »
Robert,

Much appreciated, but I would say the lion's share of credit should go to Joe.  I just happened to be pondering a similar idea at the same time, but Joe has clearly got the clearer vision for this- and rightly so.  Others have also voiced that this had crossed their minds at some point.  If anything, I would say it hints that perhaps the chasm isn't as deep as it might appear between the newly initiated and the veterans.  Many of us still aspire to maintain a shared home here that can serve the broadest spectrum of people.

T Hunter
AIDS isn't for sissies.

Offline milker

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Re: A New Forum: HIV and Aging
« Reply #44 on: April 06, 2007, 11:26:24 PM »
I'm 42 and I refuse to consider myself and old fart!

I don't consider my self an old fart either, althought some 20 something may think so but it's rare. I think the forum they are proposing is about length of living with the disease, and for some, getting prepared for the end. So I would imagine that people who are in their 30s and 40s having lived with this for 10+ years will enjoy the forum, but not be ready for the "end of life" posts, they may be disturbing for some people (not me).  I still think that it's a great idea.

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 DanielMark

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Re: A New Forum: HIV and Aging
« Reply #45 on: April 07, 2007, 03:58:50 AM »
I prefer the title Longterm Survivors ... because we are.

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline Miss Philicia

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Re: A New Forum: HIV and Aging
« Reply #46 on: April 07, 2007, 04:13:12 AM »
I like "Treatment Experienced"
"Iíve slept with enough men to know that Iím not gay"

Offline Imma_poz

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Re: A New Forum: HIV and Aging
« Reply #47 on: April 07, 2007, 04:22:09 AM »
Hi ! I'm new here and not so able with english...but i'm a longterm  survivor so I vote for it!  ;)

Ciao  :)
Imma

Offline Peter Staley

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Re: A New Forum: HIV and Aging
« Reply #48 on: April 07, 2007, 07:24:01 AM »
Joe -- it would help me if you could clarify your exact intent for this new forum idea.  Would this new forum be intended for those who have been living with HIV for many years, or for "older" members who are HIV positive (regardless of how long they've been HIV+)?  In other words, would this forum be intended for a 55 year old member who just seroconverted?

Your first sentence of this thread makes it pretty clear that you intend this forum to be for those living with HIV for many years.  But the title that you propose, "HIV and Aging", implies that a senior citizen who recently seroconverted (and there are far more of these than many people realize) would be welcome in this forum.

If that's not your intent, then I think "HIV Veterans" of "Long-Term Survivors" would be better proposed titles.  I just want everyone on the same page here, as the mods consider this proposal.

Peter

Offline Joe K

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Re: A New Forum: HIV and Aging
« Reply #49 on: April 07, 2007, 09:05:54 AM »
Thanks to all of you for supporting this idea and Peter, I know what I want the new forum to accomplish, but I do not know what to name it.  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.  The problem I have is what to name it.  I really like the title of HIV Veteran, but I fear it would be confusing to the public, as the term "Veteran" generally applies to those who have served our military forces.

Given the history, I believe the LTS moniker may be the best one to use as the term is firmly rooted in the HIV community.  I also propose that the forum would be open to anyone/everyone and I would hope that within a very short time the forum would become kinown as a safe place where we could discuss some of the most unsettling aspects that face us LTSers.

I suppose to answer your other question about someone 55+ who just seroconverted, while they would not be a LTS, they may still face many of the same issues that many of us LTSers do, simply by the fact of their aging.  So while the forum would be for LTS, it would still support all of those members who have HIV, regardless of actual age, because many older members, while HIV newbies, still face the same physical and psychological challenges, again due to aging.

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.

Offline J.R.E.

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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

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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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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

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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

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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

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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

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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

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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

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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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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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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

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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

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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.

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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

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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

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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

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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.

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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

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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.

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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

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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

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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.

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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

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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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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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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

Now accepting applications from blowjob ninjasô

Offline Miss Philicia

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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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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

Welcome Thread

Offline Miss Philicia

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Re: A New Forum: Long-Term Survivors
« Reply #100 on: April 08, 2007, 01:30:58 AM »
The daisies might wilt!  CLUTCH THE PEARLS!
"Iíve slept with enough men to know that Iím not gay"

Offline sweetasmeli

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Re: A New Forum: Long-Term Survivors
« Reply #101 on: April 08, 2007, 03:19:55 AM »
Joe, I did what you suggested and went back and reread over all the responses. Many of them stood out but one that stuck in my mind was this one:

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

I too have learnt so much from so many folk here, who I realise have not been posting so frequently recently. And I have missed their input and would love to see a turnaround in that. I totally agree with everything that Jody said here.

On reflection, I guess I made the mistake of focusing on my one concern instead of focusing on all the good that could come out of a new forum such as the one being proposed. Maybe thatís because the forums have unfortunately been peppered so much with such an unpleasant sense of divide recently. And I guess my wishes for folk to work at getting LW more Ďtogetherí again stem from the remnants of a not-quite-beaten-yet inner desire for utopia. But, saying that, Iím much more of a realist nowadays.

I am totally onboard with the concept of a safe area where fears and concerns can be voiced freely, questions can be asked without fear of upsetting others and where information can be shared. I guess I just made the wrong assumption that that is what LW is about. As has been pointed out, it sounds like it used to be.

If a new forum is what it takes to get fine folk like you Joe, Moffie, Jody, Jonathan, Alan and many others posting their reality again, no holds bar, then I fully embrace the idea and look forward to hearing from everyone again.

If the new forum is realised, I for one will be adding it to my list of forums that I frequent.

Melia
/\___/\       /\__/\
(=' . '=)    (=' . '=)
(,,,_ ,,,)/   (,,,_ ,,,)/ 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 Ann

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Re: A New Forum: Long-Term Survivors
« Reply #102 on: April 08, 2007, 06:09:16 AM »
For the record, up to now, I haven't posted in this thread because I had actually written an email to my fellow moderators the morning this thread was posted, before this thread was posted, saying pretty much the same thing as Joe and Tim (thunter) have. It was an amazing case of synchronicity that three of us would come up with the same idea on the same day, independently of each other. In a way, it was kinda "twilight zone" weird.

I didn't post here because I didn't want anyone to think this forum was a done deal, when it isn't. Just because I'm a moderator and also came up with the idea doesn't mean I pull any more weight than other forum members because at the end of the day, I'm just another voice in the crowd. I was a member here before I was a moderator and in my heart I am still a member first and foremost. The moderator bit is just a service I give to the community.

So yeah, I support this idea but this idea still needs the support of other forum members if it is to become a reality. Keep posting - and it would be good to hear from more of you who have yet to post your feelings on this matter.

Ann
Condoms are a girl's best friend

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

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

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

Offline incognito

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Re: A New Forum: Long-Term Survivors
« Reply #103 on: April 08, 2007, 06:20:42 AM »
very new to this site.  And a long term survivor.
Love the idea of a forum for discussion with fellow long term surviviors. There are 102 posts before me.
Most all of them supporting the creation of a site.
Curious, how many posts or what does it take to create the site?
If it is a space issue it seems like it would be better to use this space for real discussion about the topic instead of speculation about whether the site should exist.
I vote for creating the site and let it find it's own life.  Like all sites it will find it's meaning and thrive as long as it is needed and supported.
If you recognize me please honor my need to be anonymous here to interact on a personal level.

Offline Central79

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Re: A New Forum: Long-Term Survivors
« Reply #104 on: April 08, 2007, 06:30:26 AM »
Hey

I'm all for anything that allows people to get more out of this site. If the LTSs who've contributed to this thread feel they need a new forum, then let them have it.

However, I feel really sad that long-term survivors feel that they need the "safe space" of a LTS forum. Surely all of these board should be a safe space for everybody? And if they're not, rather than creating new sections of the site so that those who don't have the energy, or feel marginalised by conflict or discord on the current boards can move across to virgin pastures with a new set of rules centred on respect and tolerance why don't we have a discussion about a new set of rules for the ENTIRE SITE, with perhaps the exclusion of the Off-Topic forum if people want to rough-house.

As a newbie, I draw huge strength and support from some of the LTSs who post on this board. Just look at Moffie's post in response to my post "struggling". I refuse to allow the fact that HIV for me might be a very different (easier) disease to how it has been for Moffie, or Jonathan, or Joe manifest itself by belittling their issues or concerns, and what they have to live with. I would urge other members to do the same.

I would also urge the LTSs to post whatever they feel like on the "Living with HIV" forum - I hate the idea that some people feel that they can't post a thread about an issue which is affecting them. Surely a thread posted by an LTS about an LTS-related health issue would primarily draw contributions from other LTSs?! Although I would read such a thread, my only contribution as a newbie would be support/commiseration. I can't believe that anybody would go into such a thread purely to be contradictory and disrespectful. But I would miss the education I feel I get from the oldies, and the life experience that's there.

I think it is inevitable that if this additional forum was created, more and more of that stuff would be hived off, seperate and exclusive. Although the forum wouldn't be locked, there would be a de facto exclusion of newbies. I'd certainly feel excluded, and worried about asking a question, or posting, in a thread in that forum.

I don't feel I've articulated myself very well! I'm new here, and don't know what it was like before. The gist my arguement is: do we want to formalise the divisions that dominate many threads around here (and shouldn't)? Maybe it's time we broadened the discussion about how ALL of us can get the most out of every area of these forums.

Matt.
Diagnosed January 2006
26/1/06 - 860 (22%), VL > 500,000
24/4/06 - 820 (24.6%), VL 158,000
13/7/06 - 840 (22%), VL 268,000
1/11/06 - 680 (21%), VL 93,100
29/1/07 - 1,020 (27.5%), VL 46,500
15/5/07 - 1,140 (22.8%), VL not done.
13/10/07 - 759 (23.2%), VL 170,000
6/11/07 - 630 (25%), VL 19,324
14/1/08 - 650 (21%), VL 16,192
15/4/08 - 590 (21%), VL 40, 832

Offline Moffie65

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Re: A New Forum: Long-Term Survivors
« Reply #105 on: April 08, 2007, 06:32:23 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.


Bailey and Milker,

Yes!  you are both right.  However, I want to make a really important point here that you might not have thought of.  

Many of us live lives that are really scarry to those who are new to this bug.  It doesn't really scare us anymore, and at the same time, sometimes it really does.  Many of the "presenters" on this thread are doing so with an almost desperate tone to them.  I concur that to the uninitiated, this forum might look on the surface a sort of stopping point on the way to the grave, but if you think about it, it will be a place where we can come and without interruption; discuss that very scenario without having to stand up and say "shut the fuck up and quit telling me that my body is going to get better" when we all know for a fact that some of our bodies are on the decline that will ultimately lead us to that final curtain.  

We currently cannot do so in the Living forum and to prove that, please re-read some of my recent threads dealing with my own current state.  Shit Bailey, I have never even considered dying very soon until this last bout of drug failure, but the last six months have been hell, and to not have the freedom to share it and question my own decisions, judgements and plans with those who know where I am best, leaves me with an emptiness that only a place like we are discussing could possibly fill.  

Unfortunately, reality bites, and HIV is not really fun, but we can have fun WITH HIV, and still be human enough to consider the plethora of nasties that can be dished out by this bug.  Do me a favor Bailey, please remember prancing down the street with all the LTS's that you met face to face in Montreal and Toronto.  Now, were we morose? Did we fill our days with talk of puking, coffins and funerals.  No we didn't, and I think that this forum might be just a really big surprise to many of the readers as the tone would often be very humorous and totally fun.  Remember, many of us have learned that humor has been one of our best pieces of artillery with fighting this disease.  It seems that humor creates chemicals in our brains and bodies that strengthen our immune systems and at the same time, give us strength to fight on.

I do see your point, but please consider the variety, and the tenacity of the LTS on this very site.  Please recall the struggles of Nancy and her husband, and the fight she put up to cancer on top of her HIV.  She has told me that she would never return here to be mocked, or read of others being mocked again, and in my mind, if we can create a place where Nancy feels comfortable to return here; then we have done the right and good thing.

Sorry for so many keystrokes, I just couldn't sleep and had to get up to puke up my dinner from last night.  After this, maybe I can return to bed and get some more shuteye.  

Love you all at 3;30am!
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 Moffie65

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Re: A New Forum: Long-Term Survivors
« Reply #106 on: April 08, 2007, 06:40:34 AM »
Oh Matt,

"I can't believe that anybody would go into such a thread purely to be contradictory and disrespectful. "

Thanks for your thoughts, but this stands out and I think you should know that I have my own set of "stalkers" that live to ruin my posts.  They follow me like a hawk and pounce almost every time I post anything.  Unfortunately, we have long since past the "safe zone" for many of us, and the resources that you are missing out on from many LTS's who only now lurk, is astonishing.  I know you will be very surprised if this comes about.  There are many people who you would love to meet here, but will never if something like this doesn't happen.

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 DanielMark

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Re: A New Forum: Long-Term Survivors
« Reply #107 on: April 08, 2007, 07:37:11 AM »
I concur that to the uninitiated, this forum might look on the surface a sort of stopping point on the way to the grave, but if you think about it, it will be a place where we can come and without interruption; discuss that very scenario without having to stand up and say "shut the fuck up and quit telling me that my body is going to get better" when we all know for a fact that some of our bodies are on the decline that will ultimately lead us to that final curtain.

Which makes the need for this suggested forum all the clearer to me, Moffie. If folks find the subject depressing, then they probably won't look, or if they do will quickly exit that area. I donít see this as being divisive in any way, just practical common sense. If I post in an LTS forum, I certainly wouldnít stop posting in the others.

After giving this considerable thought, and I truly hope that clear terms for posting in an LTS forum will be laid out in a welcome thread off the top. Iíve been a member of another forum site since about 1999, and as an example of what I mean Iíll include the (edited) terms they use there.

The following will really annoy us if they occur in [this] forum. You will receive one warning, after which your user rights will be suspended:

1. Flaming (posting subjects deliberately designed to incite anger, rudeness etc.). We really don't like inflammatory posts that are posted solely for attention-grabbing. Nor is it cool to bolster your argument with another member by discussing their personal hygiene, looks, or what they do with their dogs.

2. Spamming, which we define as either a) posting the same thing over and over again in the same thread or forum, or across forums, or b) posting excessively in a short time with brief posts of just a few words.

Repeated posts void of substantive content or relevance to the discussion or forum may also be considered spam. It may be considered spamming if you post too many threads at one time (even though they may be about different subjects). Generally, posting up to three or four threads at a time is okay; more than that and you run the risk of spamming.

3. Regularly posting topics [here] that belong in [other] forums. If you do this regularly, expecting us to take care of it, you will be warned and then suspended.

These are only suggestions, but they seem to work well there.

Daniel

MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline Ann

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Re: A New Forum: Long-Term Survivors
« Reply #108 on: April 08, 2007, 07:48:17 AM »
Daniel,

Yes, if the LTS forum comes into being, we will have a Welcome thread stickied at the top which will outline what and who the forum is for and what sort of behaviour will not be permitted.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



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

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

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

Offline Gary85741

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Re: A New Forum: Long-Term Survivors
« Reply #109 on: April 08, 2007, 08:32:26 AM »

     I think this is a good idea...it reflects reality.  I've found over the years that there can exist a demarcation between those HIV asymptomatic and those HIV symptomatic.

     For example...in my own case I don't have infinite energy.  I have encountered over the years numerous asymptomatic guys who seemingly have trouble understanding that I can't be on the go all day and all night.  I can't go mountain climbing and hiking...other strenuous stuff.  I've gotten the "What's the matter?"..."Why are you tired?"...etc.  I don't blame them, they've just not experienced it and don't understand evidently.
     Also I have some wasting and that has been equally if not more off-putting to healthy HIVers whether sexually or even socially in some instances.

     So there are in fact specific issues with which LTSs grapple.  Anyone else experienced what I relate?

Gary   
Poz since '89. 
Current regimen: Rescriptor, Emtriva, Kaletra, Invirase, Acyclovir, Lisinopril, Lipitor, Prilosec, Valium, Testim, Nandrolone, Loperamidr, Marinol.

Offline DanielMark

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Re: A New Forum: Long-Term Survivors
« Reply #110 on: April 08, 2007, 09:54:08 AM »
Thatís good to know, Ann.

I don't blame them, they've just not experienced it and don't understand evidently.
Also I have some wasting and that has been equally if not more off-putting to healthy HIVers whether sexually or even socially in some instances.

So there are in fact specific issues with which LTSs grapple. Anyone else experienced what I relate?


Definitely  Gary, not specifically wasting (yet) but certainly periods of fatigue and there are other matters that come along as immunity fails us. A few times shingles, seborrheic dermatitis, and the most painful so far Ė anal warts out of control. Six months of sheer agony day and night until I could get laser surgery for them. Thankfully they havenít returned yet and hopefully wonít, but thatís the thing Ė we just donít know how HIV/AIDS is going to progress and it would be good to have support through a more serious and secure environment to discuss things as they develop.

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline pozinbama

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Re: A New Forum: Long-Term Survivors
« Reply #111 on: April 08, 2007, 10:00:27 AM »
As I look through the Welcome thread to the Living With forum I see all of the rules that are being proposed for the new forum already here in this forum. These rules being using common courtesy, no flaming, no personal attacks etc,. These rules are already a part of this forum. Is there a reason they have not been enforced and allowed so many of you to become unhappy with it? Mockery and juvenile hurtful behavior shouldn't be allowed in ANY of the forums.

Offline Grinch

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Re: A New Forum: Long-Term Survivors
« Reply #112 on: April 08, 2007, 10:21:04 AM »
  Matt and Pozinbama bring up very good points.  These forums have become hateful, unpleasant, and difficult to wade through in an effort to find something meaningful with regards to HIV/AIDS.  The rule are already in place just not enforced.
  If a new forum with rules that are adhered to is the answer please bring it.  I have complained loud and often about a small vocal minority making it nearly impossible to post anything here.  It seems that others are finally speaking up.

   I personally fall into the "older member" category age wise, though I was only diagnosed 3 years ago I was diagnosed at a point I was nearly dead.  The ID doc speculates I have been positive for 15+ years. I hope this qualifies me for a new and hopefully self moderated place to discuss the issues that bring me here. AIDS and the struggles to live with AIDS.

  For clarification:  That last statemen wasn't necessarily meant as a shot at the moderators.  I simply believe the community can self police better than 2 or 3 moderators

Offline DanielMark

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Re: A New Forum: Long-Term Survivors
« Reply #113 on: April 08, 2007, 10:38:07 AM »
Those are very good points. Perhaps IF the new forum comes about it would be best to have the guidelines more closely adhered to. Otherwise it will be rendered as chaotic as some threads in the ďLiving WithĒ forum seem to get, and therefore pointless really.
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Offline Miss Philicia

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Re: A New Forum: Long-Term Survivors
« Reply #114 on: April 08, 2007, 10:42:03 AM »
Frankly I'm surprised that there hasn't been a LTS section in these forums ALREADY.  It's such a no-brainer... like setting up "gifted" programs in public schools.  All it means is that the kids get one special class... they're with the rest of the kids the remainder of the day.

If anything, and I hate to make an accusation, the non-LTS that are questioning the validity of this need on these forums are perhaps being a tad selfish.  They will still be able to read the posts, and if it raises any questions in their own minds in regards to their own situation they can certainly go into "Living With" and start a new thread for further discussion.  I'm sure the majority of LTS'ers will still be participating on the rest of the forum... I know I will be.  However, I'm sure there will be many LTS'ers who will mostly congregate in the proposed new LTS section -- so?  If that's to be their comfort zone who is to deny them this space?

Certainly in light of the new "Womens" section of the forum there's not really any way to deny this current proposal in any spirit of fairness.
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Offline Dachshund

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Re: A New Forum: Long-Term Survivors
« Reply #115 on: April 08, 2007, 10:54:42 AM »
Minding a forum as large as this at it's best is like herding cats. However, I believe I have witnessed a very positive upturn in the past 48 hours. All it took was a simple request to eliminate the posting of pics in Living With to expose some members for what they really were. The calm that has extended over this site this Easter weekend is quite miraculous, nothing short of a certain someone rising from the grave. No extra rules were needed, no threats, just a realization that enough was enough and a very disruptive cabal needed a little time out.

I for one find the forums to be very welcoming...differences yes, personalities you bet...5892 at last count. But around here eventually the wheat gets separated from the chaff and the cream always rises to the top. I hope we don't put the cart before the horse with this new forum by getting caught up with rules and regulations.

Offline Miss Philicia

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Re: A New Forum: Long-Term Survivors
« Reply #116 on: April 08, 2007, 11:01:08 AM »
I'd also go as far as to credit certain recent "banishments" in facilitating this recent Easter calm, but I digress.
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Offline ademas

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Re: A New Forum: Long-Term Survivors
« Reply #117 on: April 08, 2007, 11:06:26 AM »
I would guess there are a number of things about my life and health that might seem depressing and bleak to a newly-infected or asymptomatic person, but (like Moffie stated about fear) they aren't so depressing or bleak to me.  They just sort of "are".  They've accumulated over many years of infection and med regimens, and I've had a lot of time to adjust to any limitations.

There also seems to be a different mindset for many of us who were diagnosed pre-HAART, and who indeed lived through the years of enormous losses.  Some wisdom and insights come with that mindset--but so does a helluva lot of baggage.  

It would be cool to have a place to talk about this stuff without the "I'm living with HIV/AIDS, not dying from it" and "hit by a bus" commentary.  

Offline allopathicholistic

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Re: A New Forum: Long-Term Survivors
« Reply #118 on: April 08, 2007, 11:06:44 AM »
Minding a forum as large as this at it's best is like herding cats. However, I believe I have witnessed a very positive upturn in the past 48 hours. All it took was a simple request to eliminate the posting of pics in Living With to expose some members for what they really were. The calm that has extended over this site this Easter weekend is quite miraculous, nothing short of a certain someone rising from the grave. No extra rules were needed, no threats, just a realization that enough was enough and a very disruptive cabal needed a little time out.

I for one find the forums to be very welcoming...differences yes, personalities you bet...5892 at last count. But around here eventually the wheat gets separated from the chaff and the cream always rises to the top. I hope we don't put the cart before the horse with this new forum by getting caught up with rules and regulations.

Dachshund, I am blown away by the beauty of your post. Thank you. Yup, about rules 'n' regs, let's remember the biggie essence which can be summed up with two powerful words: SAFE HAVEN.

Everyone needs to see Moffie's post #106. I'll make a prediction: If this new forum becomes a reality, AIDSmeds will see problems reduced by 60% or greater
« Last Edit: April 08, 2007, 11:24:56 AM by allopathicholistic »

Offline frenchpat

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Re: A New Forum: Long-Term Survivors
« Reply #119 on: April 08, 2007, 11:45:25 AM »
2. Spamming, which we define as either a) posting the same thing over and over again in the same thread or forum, or across forums, or b) posting excessively in a short time with brief posts of just a few words.

Repeated posts void of substantive content or relevance to the discussion or forum may also be considered spam. It may be considered spamming if you post too many threads at one time (even though they may be about different subjects). Generally, posting up to three or four threads at a time is okay; more than that and you run the risk of spamming.

Hi all,

firstly, could such a rule be applied across the forums here? Maybe by doing so we could avoid the relentless sniping of late to repeat itself.
If there is a need for a space where people can throw all sorts of things at each other in humorous and much less funny ways, maybe we should consider a chat room too? Some of the exchanges that took place recently were more akin to knee-jerk texting than conversation... But I understand that rapid messaging is a form of communication that exists today and as it appeals to (usually younger) people, why not have a space for that? It seems to me that the living with forum could then return to being the more reassuring place it has been at most times.

secondly, I am 47 and nearly 5 years positive, already on meds and experiencing some effects that others have had much later after their infection. So I do not quite qualify as either old timer or long term survivor though I do look forward to entering these categories one day. Every experience shared here about this disease is valuable to me, but ever since I joined this place I found that the posts of long term survivors were those that gave me more hope whilst at the same time they gave me a constant reality check.
It never bothered me that those posts where mixed with others in the Living with forum, until that forum became inundated with topics that, to me at least, belonged in the off topic class, and when valid topics became infected with vitriolic one liners that led nowhere. Nowhere constructive and supportive.

So if the long term survivors here feel the need for a dedicated forum, I respect their choice and will be an avid reader, even though I believe that mixing with the crowds is a better approach. I realize that this approach can only work within the boundaries of mutual respect, something that was lost in many posts recently.

Pat
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Offline Jody

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Re: A New Forum: Long-Term Survivors
« Reply #120 on: April 08, 2007, 12:35:48 PM »
I think many of the younger members here do have a great deal to offer, but as long term survivors our perspective is unique...Perhaps Jim (fiskernish) who has not posted as much and Ric (Rick Wilke) would post more often regarding their years of experience in battling HIV.

One great lady I forgot to mention in my earlier post (shame on my brain-fog) is Jan (Anniebc) whose kind, compassionate knowledge and unrequited love has meant a great deal to me and many others here at the forums.

Jody
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Offline milker

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Re: A New Forum: Long-Term Survivors
« Reply #121 on: April 08, 2007, 12:43:19 PM »
As I look through the Welcome thread to the Living With forum I see all of the rules that are being proposed for the new forum already here in this forum. These rules being using common courtesy, no flaming, no personal attacks etc,. These rules are already a part of this forum. Is there a reason they have not been enforced and allowed so many of you to become unhappy with it? Mockery and juvenile hurtful behavior shouldn't be allowed in ANY of the forums.

poz, the Moderators recently realigned the Living With forum to avoid this behavior and that seems to have worked well so far. Most of this have been moved to Off Topic. I expect people in the LTS forum to behave correctly. I know I will if I have a question related to LTS.

Milker.
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Offline sweetasmeli

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Re: A New Forum: Long-Term Survivors
« Reply #122 on: April 08, 2007, 01:20:33 PM »
Iím typing with a lump in my throat.

You know, this place and certain people on it have become so important to me. I was out all afternoon but the main thing on my mind was this thread.

The more I thought about it, the more convinced I was: how can we not have a forum for the long term survivors here?

As well as the general Living With forum, we have one for the newly infected, one for those who have people in their lives who are infected and now we have one for women who are infected.

If living with hiv is indeed a journey, which many on here (myself included) profess it is. Then, as much as none of us may like it, the reality is this: a journey has a beginning, a middle and an end. I think it was Alan who pointed out (in another thread) that we are all at different points on our journeys. So, bearing that in mind, I think the forums should provide for wherever people are at on their journey.

There are many members here who are closer to the final destination who have the right to be able to frankly discuss where they've been, where they are now and where they are/may be heading. They deserve a safe place where they can do that.

Canít type anymoreÖ

Melia
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Offline Miss Philicia

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Re: A New Forum: Long-Term Survivors
« Reply #123 on: April 08, 2007, 01:32:29 PM »
The more I thought about it, the more convinced I was: how can we not have a forum for the long term survivors here?

Exactly my feelings.  The more I've thought about it, the more glaring it is.  There are just SO many more issues the longer you live with HIV... this is a no-brainer and should not offend those on these boards with more recent infections.  I'm sure it would not be unusual on a cancer web board for there to be a section for the newly diagnosed and those others experiencing later year remission.  Let's face it, by and large HIV is on a timeline, and the further you go along the more likely you are to have multiple issues, and from my experience once you have the first serious issue it seems to multiply quite quickly and all of a sudden you're seeing a vast array of specialists, etc., all greatly complicating how you juggle your work schedule and various other tangential life issues.

If anything the newly infected should VALUE having this new section, as it will serve as an impetus for the LTS's to more fully discuss all of this that may not have been voiced previously, and they can studiously make mental notes and be able to address these things when it eventually, or rather potentially, may happen to them 10 years from now. 

Personally I googled a certain topic last summer and found this place, but basically stayed simply for the information of other similar LTS, as I personally only know one other such individual who exceeds my length of infection.  And he's not much help at all frankly and rarely has been, though I've known him for 15 years.  He's not the most pro-active with his HIV and hasn't had hardly any issues at all with his infection... and actually right now is on a self-prescribed drug holiday and has been for 2 years.
« Last Edit: April 08, 2007, 01:35:08 PM by philly267 »
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Offline J.R.E.

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Re: A New Forum: Long-Term Survivors
« Reply #124 on: April 08, 2007, 01:37:35 PM »
As I look through the Welcome thread to the Living With forum I see all of the rules that are being proposed for the new forum already here in this forum. These rules being using common courtesy, no flaming, no personal attacks etc,. These rules are already a part of this forum. Is there a reason they have not been enforced and allowed so many of you to become unhappy with it? Mockery and juvenile hurtful behavior shouldn't be allowed in ANY of the forums.


Helo Poz,

You're absolutely right !! Many of the rules are already in effect, for all the forums. Unfortunatley though , things  do get  by until the moderators are able to detect it.

I believe that if a new forum is created, your going to see a lot less of that behavior. Why ?  Because it simply won't be tolerated, in this forum !!. Anything volatile, simply won't go.... This is exactly what most of us are stating when we mean a "safe place"


Anyway those are just some of my thoughts. I got to go to bed....Got to get up for work tonight.


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%

  
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Offline incognito

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Re: A New Forum: Long-Term Survivors
« Reply #125 on: April 08, 2007, 02:09:32 PM »

   
     For example...in my own case I don't have infinite energy.  I have encountered over the years numerous asymptomatic guys who seemingly have trouble understanding that I can't be on the go all day and all night.  I can't go mountain climbing and hiking...other strenuous stuff.  I've gotten the "What's the matter?"..."Why are you tired?"...etc.  I don't blame them, they've just not experienced it and don't understand evidently.
     
     So there are in fact specific issues with which LTSs grapple.  Anyone else experienced what I relate?

Gary   


thanks for posting gary
i experience the tiredness sometimes.  wondering if you can tell the difference between hiv related and just working long hours or staying up all night
i'm having a hard time telling the difference
your advice is appreciated
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Offline Joe K

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Re: A New Forum: Long-Term Survivors
« Reply #126 on: April 08, 2007, 03:40:45 PM »
I would like to clarify two points about the proposed new forum.  The first being that right now, most poz people who enter the site (Peter correct me if I am wrong) will generally go to either the I Just Tested or Living forums.  As discussed earlier the Living forum is becoming like somewhat of a gateway for pozzies to start exploring this site and I believe we have a duty to keep some of the more somber or "serious" discussions in a different forum.

My reason for this is simple.  We will never know how many potential members we lose each day, because they stumble into the wrong forum, or what about the poor soul who has the misfortune to click on a thread that deals death qnd dying.  I imagine if I read such posts when I first tested I would run for the hills as well.  However as currently structured, there is no place else for such somber discussions except for the Living forum.

But you all seem to miss the most obvious reason for this new forum.  All of you who are eventually to become Long-Term Survivors can monitor the issues that some of believe are paramount in maintaining your health.  I would hope that if you were in the forum and had some experience, with an issue being discussed, that you would post in that thread.  None of us know it all and I believe that the more we spread out the forums, by interest, the more steady they will remain.

As to those who mention the rules already in place, yes we propose the same structure, however we believe that our main difference will be the absolute intolerance for denigrating comments to the forum members.  Many of you remember the days before our moderators had to don armor and we only needed them in extreme cases, because we took care of our own.

That is all that we now ask.  Give us a place so we can take care of our own.
« Last Edit: April 08, 2007, 03:43:47 PM by killfoile »

Offline thunter34

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Re: A New Forum: Long-Term Survivors
« Reply #127 on: April 08, 2007, 06:24:55 PM »
Like Joe has mentioned before, notice the (still) absent disrespect flowing through this thread.  It has spawned some of the most beautiful and heartfelt posts I have read on here to date. 

Leave it to Melia to once again to bring a point into crystal clear focus:  it makes perfect sense chronologically to have a third tier to balance out the order of discussion...Just Tested, Living With and Long Term Survivors.  Something about viewing those three titles together like that brings about such a hopeful feeling to me.  Contrary to being divisive, it creates a sense of cohesion to me personally.

The point Joe mentioned just above wasn't lost on me.  I look to this forum as offering both a glimpse into our past as a community bonded by the experience of HIV/AIDS and perhaps a look towards our possible futures.
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Offline whizzer

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Re: A New Forum: Long-Term Survivors
« Reply #128 on: April 08, 2007, 07:42:00 PM »
I am not a long term survivor.  I hope to get to that point one day, but I am fairly recent in my diagnosis - over one year, less than two.  I am, however, past the mid-century mark, and feel a lot more in common with the older folks than the younger ones.  I have been on meds from the start, and not one pill a day, but rather a fairly complex regimen.  In addition, I look upon  HIV as the extremely serious condition that it is, and find myself annoyed with those who do not.  Consequently, I find myself reticent to post questions in LW regarding any sort of problems I may be facing. 

When certain conditions arise, I always wonder if it is the virus or just the aging process.  If I have a question or a concern, I'd like to have substantive, thoughtful answers - or none at all, rather than platitudes and "chin up, things will get better" responses.  Let's face it, there are some things that just might not get better, and the support comes in commiseration, certainly, but more importantly, in advice on how one might deal with the issue at hand, which just might include ways to learn to live with it.

For my year-and-a-half on meds, I have been extremely fortunate to have suffered few side effects.  Now, however, peripheral neuropathy is becoming evident.  I have not mentioned it here before because I have found the LW forum to be, shall we say, lacking in concern for some of the more serious topics that have arisen of late.  I have loads of questions about how people live with it, but have not felt comfortable asking the questions I want to ask.

I would hope that the forum would not be limited to those infected for 10, 15, or 20 or more years, but rather, might include both long term survivors  and older individuals dealing with HIV.  The simple fact is that the impacts of HIV increase with both the term of infection and the age of the infected individual.  In addition, there is a certain maturity and insight that comes with years, as we grow distant from our invincible former selves,  no matter how long you have been infected. 

Now, I'm not looking for a Dying-with-HIV forum (though that name might lend the requisite serious tone to the postings contained within).  I would just like a place where serious discussions on the topics at hand can take place.  The LW forum was like this in the past, but as the site has grown it has become less so. 

I would not abandon the LW forum.  Hell, I read all of them except the "AM I" forum, since I just don't have the stomach for that.  There are things that are helpful to everyone living with HIV, subjects to which  everyone will enjoy responding, and then there are darker topics, like surviving, aging, and, yes, dying,  that everyone with HIV just might not want to hear.  The new forum, should it actually come about, would be a place for the latter, populated by those of us who know that when physicians say "chronic, manageable illness", they mean there is a treatment for it and it's probably not going to kill you for 10 or more years.  Not that those years will necessarily be as pleasant as those that have preceded them.

Were I not permitted to post in said forum since I am still a bit of a newbie, I would still find reading it to be helpful.  I think it would be a positive addition to these boards.

-Whizzer

Offline allanq

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Re: A New Forum: Long-Term Survivors
« Reply #129 on: April 08, 2007, 08:53:02 PM »
Whizzer,

You mentioned that you are starting to get peripheral neuropathy but don't feel comfortable bringing it up in the Living With forum. For this particular issue, you might try the forum for "Treatment & Side Effects," since peripheral neuropathy is definitely a side effect. I go to this forum frequently and cannot remember ever encountering any rude or nasty behavior there. I've learned quite a bit on this forum and it has also enabled me to provide advice that I hope is helpful. (This new forum consolidates what used to be three separate forums: Treatment Issues, Side Effects, and Lipodystrophy.)

I still believe that a separate forum for long term survivors (or whatever name is chosen) would be an excellent and much needed & appreciated addition to this website.

Allan

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Offline DanielMark

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Re: A New Forum: Long-Term Survivors
« Reply #130 on: April 09, 2007, 07:17:32 AM »
Whizzer,

I for one would be completely comfortable if older folk who are newly diagnosed are permitted to be part of the proposed new forum, if it comes to be.

Like it or not, I find a different mind-set and approach to people exists for those of us, shall we say, of a certain age group.

Apart from surviving HIV for some years, there are other topics specific to my generation, Andropause (male menopause) for example.

Daniel
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VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline sweetasmeli

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Re: A New Forum: Long-Term Survivors
« Reply #131 on: April 09, 2007, 07:59:26 AM »
Were I not permitted to post in said forum since I am still a bit of a newbie, I would still find reading it to be helpful.  I think it would be a positive addition to these boards.

I think Joe and others have made it perfectly clear that the new forum being suggested would be open to all members to view and/or participate in. The only members who will not be welcome are those who are unable to show forum decorum and respect to others. And rightly so.

Just for the record, in response to:

But you all seem to miss the most obvious reason for this new forum.  All of you who are eventually to become Long-Term Survivors can monitor the issues that some of believe are paramount in maintaining your health.  I would hope that if you were in the forum and had some experience, with an issue being discussed, that you would post in that thread.  None of us know it all and I believe that the more we spread out the forums, by interest, the more steady they will remain.


I missed that point at the start of this thread but totally got it further along. Hence my follow-up posts.

Melia
« Last Edit: April 09, 2007, 08:01:15 AM by sweetasmeli »
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Offline Peter Staley

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Re: A New Forum: Long-Term Survivors
« Reply #132 on: April 09, 2007, 09:06:26 AM »
After careful consideration, and taking into account the overwhelming response in this thread, we've decided to create a "Long-Term Survivors" forum in the next day or two.  We're working on drafting a welcome thread, and we'll launch once that process is done.

I do think it's worth noting, however, that there is some skepticism amongst the mods, me included, about some of Joe's and others' statements about being "self-moderated," and that the forum will have an "absolute intolerance for denigrating comments," and it's members will "take care of our own."

Without having the ability to issue your own TOs and bans, exactly how will the members of this forum "self-moderate?"  

Let me be clear -- many who are calling for this new forum are some of our most opinionated and strong willed members (that's a compliment, by the way, and probably the reason many of you are now long term survivors).  As a group, one or more of you have often been involved in a majority of the flamewars that occur in our other forums.  I know you feel you were the ones being attacked, but your consistant involvement might just be indicative of your opinionated and headstrong natures.

Do you really think you'll be able to maintain a "respectful" environment in this new forum, just be willing it?  We have our doubts.  Therefore, this new forum will be moderated like all others.

That said, we are hopeful that the need for heavy moderating will be much reduced in this new forum.  If anything, pulling the newbie vs. oldtimers flamewars off the table should provide a very healthy foundation to build on.

I remain hopeful about allopathicholistic's prediction -- "If this new forum becomes a reality, AIDSmeds will see problems reduced by 60% or greater."  However, I think some who have posted in this thread are being a bit naÔve that a bunch of LTS's won't get into some pissing matches sometimes.  Given the strong personalities involved, it is going to happen -- let's just hope it's not that often.

When it does, it won't mean the AIDSmeds forums have fallen on hard times -- this old canard has been said by many, on a regular basis, since about 6 months after the forums were first launched in March of 2000.  This is just the nature of this very public place -- it feels like it's constantly changing for each of us, but in the aggregate, it's much as it always was (with one big exception -- it always keeps growing).  We continue, to this day, to receive a steady stream of emails from folks who feel that these forums have helped them in some way, and even "saved" them.  I feel strongly that the credit for this goes to all of you -- those members who post here often, and do their best to help others.

And you have all asked for this new forum, with passionate and well-reasoned posts.  I'm looking forward to watching it grow and thrive, and for the more active participation of the Survivors that have been the backbone of these forums.

Peter Staley
(the LTS that founded this site)

Offline Gary85741

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    • Good guy, good heart
Re: A New Forum: Long-Term Survivors
« Reply #133 on: April 09, 2007, 09:13:48 AM »
thanks for posting gary
i experience the tiredness sometimes.  wondering if you can tell the difference between hiv related and just working long hours or staying up all night
i'm having a hard time telling the difference
your advice is appreciated


Incognito...

Well I guess the difference would be: transitory...event-specific...as opposed to ongoing.  I'd think someone being tired from a long day or night would be easier understood as it's been experienced by most of us.  Chronic lower energy from HIV...not experienced by all and hence less understood?  One would think it just takes a bit of empathy to understand either situation.

Gary
Poz since '89. 
Current regimen: Rescriptor, Emtriva, Kaletra, Invirase, Acyclovir, Lisinopril, Lipitor, Prilosec, Valium, Testim, Nandrolone, Loperamidr, Marinol.

Offline Moffie65

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Re: A New Forum: Long-Term Survivors
« Reply #134 on: April 09, 2007, 09:49:19 AM »
Peter,

"You are a good man Charlie Brown"

Let me be clear -- many who are calling for this new forum are some of our most opinionated and strong willed members (that's a compliment, by the way, and probably the reason many of you are now long term survivors).  As a group, one or more of you have often been involved in a majority of the flamewars that occur in our other forums.  I know you feel you were the ones being attacked, but your consistant involvement might just be indicative of your opinionated and headstrong natures.

OR, maybe some of us who have been in this work for most of our time with the bug, tend to have very clear views of what this disease is and what it isn't,  and when the "political" network, in all of it's attendant intricacies gets out of hand, many of us stand very strong, and very narrowly on what we know from our past lives and our continuing efforts to make this disease go away.  For many of us this is a work that burns in our hearts and minds, and when we are challenged with less than relevant views or posts, we tend to get just a bit touchy. 

Peter, you have a long history of standing up for the truth, and for that which will sustain, rather than that which tears down.  From our end, sometimes we do become very defensive because of the reach and influence of your own very creation right here.  You have provided a very level headed and balanced approach to this present and the coming future, and through your site/medium, we have been invited and allowed to reach our work beyond our bedrooms and beyond any possible scope than we could have possibly dreamed 25 years ago.  That being said, it is also important to keep the message clear and untainted with bullshit that only seems to derail and to set back; then we do get testy. 

Moderation for the new forum would of course be welcomed, but please be aware that we will also make every attempt to keep the scope and the focus directed, and to keep this forum one of tenderness, support and a place where we can really commiserate about some of the really touchy and strange questions that many of us are in need of answers to.  To be able to do this in an environment that is friendly and non-confrontive is mandatory, because many of the threads, I predict, will be totally boring to those not in our station in this disease process. 

Thanks for being in the world Peter, and doing what you were created to do.  You have done it well, and with a huge amount of grace.  May this place continue, grow and prosper. 

Love,

(edited for two typos)
« Last Edit: April 09, 2007, 10:10:26 AM by Moffie65 »
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 FunkyMonkey

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Re: A New Forum: Long-Term Survivors
« Reply #135 on: April 09, 2007, 11:20:01 AM »
Ya know---not a bad idea.  A reoccuring problem I keep tripping over (when I actually stop to notice) is that after living with HIV this long--and becoming one of THOSE "Poster-boy's"...sometimes its good to sit and chat from foxhole to foxhole with folks who have been-there-done-that.  SO often many of us who have been around awhile continue to see ourselves (and others see us) as walking-talking resource guides.  We spend a lot of time helping others and giving advise--which is great--but too often some of us (me--BIG time) forget we still need the brotherly/sisterly support that can keep us going.

Offline StanDaMan

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Re: A New Forum: Long-Term Survivors
« Reply #136 on: April 09, 2007, 12:15:53 PM »
I wonder if an "agreement to terms" message could pop up for the LTS forum like the one for CSI?  It wouldn't be about copyright but by clicking "agree" the poster would verify he is a long-term survivor and will respectfully post messages in LTS that are not antagonistic toward those with different views.  Even among long-term survivors there are great differences of opinion and experiences but the purpose of the forum is for LTS to discuss our issues.

The agreement box would be a way to stress to posters if they don't belong in the group their messages may be deleted if inappropriate.  This isn't a suggestion promoting viral apartheid but if the LTS forum is to be a success it truly must be a safe space for members to post without a "HIV is like a cold" member bashing those who know the truth.

Just a suggestion.

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

Offline ACinKC

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Re: A New Forum: Long-Term Survivors
« Reply #137 on: April 09, 2007, 12:21:01 PM »
I wonder if an "agreement to terms" message could pop up for the LTS forum like the one for CSI?  It wouldn't be about copyright but by clicking "agree" the poster would verify he is a long-term survivor and will respectfully post messages in LTS that are not antagonistic toward those with different views.  Even among long-term survivors there are great differences of opinion and experiences but the purpose of the forum is for LTS to discuss our issues.

The agreement box would be a way to stress to posters if they don't belong in the group their messages may be deleted if inappropriate.  This isn't a suggestion promoting viral apartheid but if the LTS forum is to be a success it truly must be a safe space for members to post without a "HIV is like a cold" member bashing those who know the truth.

Just a suggestion.

SD   

I dont quite think that level of "security" is required.  And there already is a TOS agreement and posting guidelines and TO policies and all that.  No need to dictate exactly what can be said.
LIFE is not a race to the grave with the intention of arriving safely
in a pretty and well-preserved body, but, rather to skid in broadside,
thoroughly used up, totally worn out, and loudly proclaiming--WOW! WHAT A
RIDE!!!

Offline Joe K

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Re: A New Forum: Long-Term Survivors
« Reply #138 on: April 09, 2007, 12:29:02 PM »
To everyone, especially Peter, Tim, Ann and Andy, thank you for supporting the new forum and while I understand your scepticism Peter, I hope we can prove most of it unwarranted.  I will be the first to admit that I have been caught up in a flame war or two, but in my five years with this forum, I have only one TO and given my sheer number of the posts over the years, I think that speaks volumes about how I conduct myself on these forums.

Of course we expect the new forum to be moderated and we have no illusions that there will never be turmoil, however I must return to this very post to show that in over 135 posts THERE IS NO PRESENCE OF DISRESPECT and look what that has allowed us to accomplish.  I'm not sure, but I would guess that it is a site record to go from an inquiry (Ann, Thunter and myself) on the same day (last Friday), to you announcing the formation of the new forum two days later.  That tells me we are onto something and hopefully we can present a good example through self-policing that may spread to other forums.

Most important is that we have the chance to start a new forum that hopefully will grow to be as valued and nurturing as most of our forums remain.  There will always be challenges when dealing with such different personalities and life challenges, but we have done it before and I know we can do it again.

The "moral" rules for the new forum remain inviolate and is very simple: Treat others with the dignity and respect that you expect them to treat you with.  For many of us we have frequented these boards and have agreed to disagree for years without tearing each other apart.  There is a time and place for everything and hopefully the new forum will intice back so many of our posters who now lurk in the shadows

To all of you, my heartfelt thank you for supporting this and giving us a place to take care of our own LTSers.
« Last Edit: April 09, 2007, 12:30:37 PM by killfoile »

Offline jimw

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Re: A New Forum: Long-Term Survivors
« Reply #139 on: April 09, 2007, 04:12:19 PM »
I hope that there is not a split in the Living with HIV forum.  There are too many splits in our community.  Just once, I would love it if we could all come and work together for a single purpose while respecting the differences in others without having to splinter into a thousand separate groups.  Yes, there are differences between someone who has been living with HIV/AIDS for many years and those who were only recently diagnosed, but those differences are superficial.  The fact is that we all have the same disease - albeit different stages. 

There are so many things that those who have been living with HIV/AIDS can help those who have only recently been diagnosed.  That wisdom is something to be shared, savored, and celebrated - not closed up and made available only to a select group. 

I can't help but feel like a second class citizen, again.  I'm sorry Jim, but you've only been positive for 1 year so you can't play with us.  You can't possibly know how we feel so you have to post somewhere else.  Someone said once, I can't remember where, that they felt like having HIV so so 80's - now I know how they feel.  I said in my introductory post that I felt like a cheater - its great to have it validated.

I know I am against the tide on this one, but this is how I feel and my opinion.  Jim

 

Offline Moffie65

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Re: A New Forum: Long-Term Survivors
« Reply #140 on: April 09, 2007, 04:49:33 PM »
Jim,

If only your dreams could come true, but many of us dinosaurs have been rebuked (by the newly infected) time and time again for reminding people that this disease is killing some of us and tearing others up to the point that quality of life really sucks.  Now I would be all for your point of view if this had not happened to us right here, but it has, it does, and time and time again, we have to simply shut up and talk with each other on the sly and we are NOT provided the room or the leeway to discuss issues of end of life.  Unfortunately, these are the facts and this is why this is such a very needed idea. 

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 jimw

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Re: A New Forum: Long-Term Survivors
« Reply #141 on: April 09, 2007, 05:19:26 PM »
If only your dreams could come true, but many of us dinosaurs have been rebuked (by the newly infected) time and time again for reminding people that this disease is killing some of us and tearing others up to the point that quality of life really sucks.  Now I would be all for your point of view if this had not happened to us right here, but it has, it does, and time and time again, we have to simply shut up and talk with each other on the sly and we are NOT provided the room or the leeway to discuss issues of end of life.  Unfortunately, these are the facts and this is why this is such a very needed idea. 

Moffie, nothing ventured, nothing gained. 

Yes, it is true, I have never had PCP, I have never had KS, and frankly I have never had to watch or help a loved one pass because of this disease.  But I have had fatigue so bad that I slept for 20 hours a day, I had to change my route to work so I had bathrooms available - just in case.  I had to carry a change of underware with me in my backpack - just in case.  I joined a gym close to my office so I could use the shower there if I needed instead of having to go home - walking home with shit dripping down the inside of your jeans is something that I just didn't want to do more than once.  I suffered from clinical depression, anxiety and paranoia and has suicide ideation.  yes, I know these quality of life problems are trivial compared to some, and I would never knowingly or intentionally rebuke anyone for reminding us that this disease still kills (Frankly, I wish someone would have reminded me of that a few years back, even beat it in my head, and maybe I would not be here right now) or for discussing end of life issues.  Yes, I know that there are members here that are in the "winter" of their lives and want to talk about issues associated with that and I welcome that discussion; who knows, maybe even us newbies can offer some advice or be of some use, but if you start your own from we will never have that chance! 

If it happens, it happens and life will go on.  I just think that, if you will allow me to use your word, "dinosaurs" have a lot to offer us "newbies" and "newbies" have a lot to offer "dinosaurs" and I hope that a splinter group will not form.

Jim

Offline milker

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Re: A New Forum: Long-Term Survivors
« Reply #142 on: April 09, 2007, 05:26:16 PM »
Moffie,

thank God there are people like you, jk, killfoile and others that will bang our heads against the wall to remind us that we're not invicible and that we're up for a long journey with good and bad and very bad times. Imagine a forum with just newbies... :o

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 #143 on: April 09, 2007, 05:28:41 PM »
Jim,

I don't think the type of "splinter group" you are referring to is going to happen with the onset of this new forum.  I am speaking this as a fellow "newbie" (36 and two years into diagnosis).  It seems to me so much of this new vs. old business boils down to a matter of respect more than anything marked on a time line.  That, and a question of fortune, with "new" and "old" marking how well some people have been able to "manage" HIV / AIDS as opposed to others.  And again, so much of that is simply a matter of fortune.  I plan on hanging back and reading for the most part once this new forum gets off and running, but I feel safe in saying that I believe when the time is appropriate, I will be able to post in this forum without an issue- simply because I already share dialogue with so many of the people requesting this forum and hopefully have a pretty good grasp of how to participate in the discussions in a respectful manner.  As long as people approach the threads with a mind toward dignified communication, I doubt anyone will get turned away for not meeting a quota of days on a calender.

Hunter
AIDS isn't for sissies.

Offline J.R.E.

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Re: A New Forum: Long-Term Survivors
« Reply #144 on: April 09, 2007, 07:57:54 PM »
Hello Peter,

  I also want to take this opportunity to thank you and the others, for taking your valuable time, and to taking into consideration the creation of this new forum. I believe it's going to be great ! And, you certainly ask, some very valid questions, as to how this  new forum will / can be self moderated. A very simple answer to that is, (and not a very good one) is "time will tell" The forums will still require outside moderation.

  There are many here, that are certainly, much more "opinionated, and strong willed", than others, as you have stated. There is no doubt about that.

  And there are some of us, ( I certainly include myself in that category.) That would certainly just back off, when we see the possibility of a thread that may be heading into a direction, that could possibly bring up some heated conversation. I have done this many times before on the living with forum myself. Perhaps I will back off less often, and instead , try to work with the others,through PM's in helping to solve a possible conflict, before it really gets heated, and starts heading into that  "point of no return area."   There will always be things that the long termers, may not agree on,( I believe there is much more that we do agree on) but we all,  can at least, be willing to accept others thoughts and opinions, and do so in a mature way. I would expect the same in return from the other members. If I was to perhaps make a statement that  that may be controversial, or others may disagree on, I would hope that a good conversation could be the result of that, so that we can continue to learn from each other. It all comes down to respect !!

  As I previously stated,  I have a feeling, that there is going to be some private messages occurring, to each other,( I mean that in a productive way) especially between those who really wanted this forum. I think that if we PM others, when we see certain subject matter possibly going off track, this will certainly help in aleviating any major problems or conflicts that may occur, before outside moderation needs to occur. I certainly would not be offended, if someone was to private message me and say" Hey Ray, maybe you should take a breather, for a little bit," collect your thoughts" That would not bother me ! I would welcome that !

As Alex has stated, I also believe that the problem and the flaming, and getting caught up in the flaming, can be significantly reduced. Mainly because, most/all that have posted in this thread, realise the overwhelming importance of this new forum, and it's purpose, for all of us long term survivors.

And just for the record, I very much intend, to continue my participation in the other forums as well. I may not always have a lot to offer at times, but where I can help, support, or just share some of my experiences, I will continue to do that !!

Thanks again------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 Peter Staley

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Re: A New Forum: Long-Term Survivors
« Reply #145 on: April 10, 2007, 09:44:28 AM »
The new forum is open for business!

Enjoy!

Peter

Offline David_CA

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Re: A New Forum: Long-Term Survivors
« Reply #146 on: April 10, 2007, 10:31:49 AM »
I think it's a great idea, with one possible exception.  Those that participate in it MUST still participate in the "Living with" forum!  Just kidding, kinda.  There's a lot of crap that us newly diagnosed are going through that are best responded to by those who've dealt with such issues in the past.  In other words, don't abandon the "Living with" forum - we need you 'old timer's' insight and input a lot more than we often let on!

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 AlanBama

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Re: A New Forum: Long-Term Survivors
« Reply #147 on: April 10, 2007, 10:42:39 AM »
We won't abandon y'all David....

David, I have to tell you that you are a relative 'newbie' but you are someone I respect very much.   I agree with about 99% of every post you make, and I feel that you have handled your diagnosis with much grace and humility in the first year.   If I had done as well 20 years ago, I'd probably be a super star today!   I fell completely apart during my first year, went into complete denial, and buried my head in the sand.

hugs,

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

Offline sharkdiver

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Re: A New Forum: Long-Term Survivors
« Reply #148 on: November 20, 2009, 01:46:28 PM »
I'm sorry to walk down memory lane, but
 I re-read this thread.

I miss Christine and Kate.


I'm a wreck now, I'm turning the computer off

Offline Miss Philicia

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Re: A New Forum: Long-Term Survivors
« Reply #149 on: November 20, 2009, 02:11:47 PM »
I think it's a great idea, with one possible exception.  Those that participate in it MUST still participate in the "Living with" forum!  Just kidding, kinda. 

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.
"Iíve slept with enough men to know that Iím not gay"

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.

Offline 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

Offline 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?

Offline 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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