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Author Topic: In your opinion, what is a long term survivor?  (Read 46201 times)

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Offline Moffie65

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  • Living POZ since 1983
Re: In your opinion, what is a long term survivor?
« Reply #50 on: January 12, 2009, 11:59:41 AM »

However, what I normally see when a non-LTS posts in this forum is someone dropping in to say something supportive. Where's the harm in that? I'm not being facetious when I ask that - I'd like to know.

Ann


I forgot to answer this one Ann.

Since you would like to know, I will let you know.  When I post here, I am doing so because I am seeking feedback and support from people who UNDERSTAND what I am going through and how I'm feeling at the time.  When these "supportive" posts pop up here from just anyone, they really annoy me because nine out of ten times they include some Ka-Ka-Me-Me suggestion about how I can fix my problems.  I call BULLSHIT!!  The very reason for this forum was to give us a place to comisserate ourselves WITHOUT input from those whose experience is limited and is more often than not, un-needed, and inaccurate. 

If I want the whole site to see something and comment on it, there are several other choices where I can put something that will get me a plethora of commentary from all comers, and I know that from the start, so this forum is supposed to be here to let us do our thing without interferrence.
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 Miss Philicia

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Re: In your opinion, what is a long term survivor?
« Reply #51 on: January 12, 2009, 12:08:58 PM »
Does that mean I can go in the Positive Women's forum now and offer "support" every 10 minutes?  Yipee!
"Iíve slept with enough men to know that Iím not gay"

Offline LTSurviver

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Re: In your opinion, what is a long term survivor?
« Reply #52 on: January 12, 2009, 12:21:50 PM »
Tim,

Whoa now.  I'm just a newbie here on this forum, though I've been + for 22 years now.  I was just saying how this thread reminded me of society subdividing itself.  That's all.

My comment did not denote me being against it, nor for it.  Just something that jumped to mind.

I tend to think out loud.

Offline AlanBama

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Re: In your opinion, what is a long term survivor?
« Reply #53 on: January 12, 2009, 12:22:46 PM »
I still think Hal has it right:  if you have to ask if you are one or not, you AREN'T.
So don't post here.   It's very simple really.

to LTSurvivor:  I see that you identify yourself as a LTS, even with the screen name you chose, even though you say you did nothing for 20 years?  Perhaps you are a LTNP (long term non progressor) and they are welcome to post here if they have something to say.

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 LTSurviver

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  • LTS since 1987. LTNP until 2008.
Re: In your opinion, what is a long term survivor?
« Reply #54 on: January 12, 2009, 12:38:46 PM »
Hi Alan,

I did not take the meds for 20 years, yes.  I've survived for 22 years, meds or no meds, so I figure I'm an LTS.  I used that phrase 13 years ago as my screen name in the AOL Positive Living chat rooms before "LTS" was used much by anyone.  I intentionally misspelled it back then, and again here.

I have no idea why my CD4 count remained between 160 and 180 for so long.  I'd hate to think that my good fortune is something that would make people feel they should exclude me or anything like that.  I may not have delt with taking meds, but I have had to deal with this disease and the issues having a count below 200 comes with.

Offline AlanBama

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Re: In your opinion, what is a long term survivor?
« Reply #55 on: January 12, 2009, 01:30:36 PM »
LTSurviver, if you are 22 yrs post diagnosis, you are definitely a long term survivor and certainly no one wants to exclude you.  In fact, I'd like to hear more about your story.   Were you being monitored during the 20 year period without taking any drugs?   Was it recommended that you go on drugs and you just didn't want to?   We're always curious about how people have managed to become long term survivors, so your story may serve as an inspiration for others.

Welcome to the forums.

Alan

Edited to add:  I just read your introductory post in the "Introduce Yourself" thread.  I should have done that sooner!   Again, welcome.
« Last Edit: January 12, 2009, 01:34:28 PM by AlanBama »
"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 LTSurviver

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Re: In your opinion, what is a long term survivor?
« Reply #56 on: January 12, 2009, 01:39:16 PM »
Thanks, Alan.

For the first 5 years or so I was tested every couple months.  Then I slacked off and tested every 6 months or so.  And for the last 8 years I tested yearly.

I was told every time I tested I should start the drugs.  I always figured I would when I got my first real OI.  I saw the terrible side effects, especailly with the high dose AZT back in the day, and wanted nothing to do with it if I wan't sick yet.

How did I manage?  Nothing in particular.  I was a smoker for the first 12 years.  I used to drink a bit too.  My diet has always been what health nuts would call unhealthy, but then I love beef.  I guess the secret is my own genetics and the genetics of the strain I got.

In other words, I've pretty much Forrest Gumped my way through it all.

I probably could go a lot longer without the drugs if I chose to be a hermit.  But constantly getting sick during cold and flu season whle working in a bar finally took it's toll.

Offline RapidRod

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Re: In your opinion, what is a long term survivor?
« Reply #57 on: January 12, 2009, 02:14:10 PM »
Quote
I always figured I would when I got my first real OI
That's not very bright thinking now is it? You get an OI and it may be the only OI you get and you won't ever get a chance or need to ever think about taking HAART.

Offline LTSurviver

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Re: In your opinion, what is a long term survivor?
« Reply #58 on: January 12, 2009, 02:35:25 PM »
Bah, after so many years I figured I was partially immune.  Who wouldn't?

Offline MarcoPoz

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Re: In your opinion, what is a long term survivor?
« Reply #59 on: January 12, 2009, 02:36:36 PM »
We've all already answered that above.  I'm with Sharkie, I mind people who aren't LTS posting here.  Another example if they wanted to ask a question of LTS'ers is to start a thread in Living With. 

And by the way, I don't want any man posting in our women's forum.  We're very protective of each other. ;)
(and Marco, this does not mean I have a problem with straight HIV+ men, just men invading our space)

The Welcome to this thread states:

At the same time we hope that those who are newer to living with HIV will be able to benefit from the knowledge and experience that will be shared here. We are not excluding anyone from participating here, but we do ask that you be mindful of the special needs for which this particular Forum has been established.  

I wasn't saying let the floodgates open--what I said was that I didn't mind hearing from newbies--and I don't think this thread should disallow new positives from posting here. The welcome message makes my point.

As for invading someone's space????  I was talking about asking questions if someone wanted to.  I'm not saying I want to chat on the Womens forum, but I see I must not be making clear points today, so as not to make more out of this than is neccessary--I'm just saying I've learned in just a few posts about who is allowed where.  Boy do I feel better now.

I'm out.

:-) peace

Offline Moffie65

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Re: In your opinion, what is a long term survivor?
« Reply #60 on: January 12, 2009, 03:29:55 PM »
The Welcome to this thread states:

At the same time we hope that those who are newer to living with HIV will be able to benefit from the knowledge and experience that will be shared here. We are not excluding anyone from participating here, but we do ask that you be mindful of the special needs for which this particular Forum has been established.  

I'm out.

:-) peace

Marco, we all know what the Welcome Sticky to this Forum states, that is the reason for this thread; to question the intent of the forum.  Personally, when this forum was created, it was done so with the input of many of the participating LTSers at that time.  When the Welcome Post was created, we had nothing to do with it, and frankly it was changed to open up to all AFTER the forum was created.

Once again, if this really disturbs you, please read the original thead that was the impetus for the creation of this forum, and you can find it in one of the posts above. 

Thank you for your opinion.
« Last Edit: January 12, 2009, 03:32:17 PM 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 Miss Philicia

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Re: In your opinion, what is a long term survivor?
« Reply #61 on: January 12, 2009, 03:43:22 PM »
I never realized that the Welcome Thread read like that.  The wording, to me, seems to negate the purpose of even having a separate forum.  I would feel better if it read: We are not excluding anyone from reading here, but we do ask that you be mindful of the special needs for which this particular Forum has been established. 
"Iíve slept with enough men to know that Iím not gay"

Offline BT65

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Re: In your opinion, what is a long term survivor?
« Reply #62 on: January 12, 2009, 03:53:17 PM »
I would feel better if it read: We are not excluding anyone from reading here, but we do ask that you be mindful of the special needs for which this particular Forum has been established. 

I like that idea, Philicia.  Now, to get the mods to change it would be a big accomplishment.  I don't know why it's so important to leave this forum open for "newers" to be able to post in.  That seems to be defeating the purpose of having a LTS'ers forum.  Just like the women's forum is for women, LTS should be for LTS.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Moffie65

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Re: In your opinion, what is a long term survivor?
« Reply #63 on: January 12, 2009, 03:54:34 PM »
Phili, this was the reason I created this thread, because I finally read the Welcome sticky, and was shocked.  Yes, the whole reason for the forum is negated by the "Come one Come all" input from the mods.
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 YaKaMein

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  • Posts: 368
Re: In your opinion, what is a long term survivor?
« Reply #64 on: January 12, 2009, 04:34:56 PM »
Still chiming in ...
Am glad Moffie made the post. It's helped this newbie see how important having the LTS forum is and how vested its participants are. There's no reason why others, like me, can't comprehend and respect the need. It's reiterated that I can be considerate of others desires.

Am glad Ann mentioned that most of non LTS posts were supportive. I looked at my own stats and saw about a dozen posts early on after I registered mostly. There were short and things like 'Hope you feel better'.

Given how few non-LTS have responded, I'm thinking we got the picture.
09/11 Endocrine Consult
08/11 CD4 328 14.9% VL 0
 Disc'd Bactrim DEXA -3.1 Tscore
03/11 CD4 338 14.7% VL 0
11/10 CD4 300 14.3% VL 0 <20copies
07/10 CD4 336 14.0% VL 0 DEXA -2.7 Tscore
03/10 CD4 308 13.4% VL 0 Vit D normal
01/10 Began FOTO
11/09 CD4 274 13.7% VL 0 Chol 173 Trig 131
07/09 CD4 324 13.5% VL 0 DEXA -3.1 Tscore lumbar
03/09 CD4 207 10.9% VL 0
11/08 CD4 227 10.3% VL 0 Chol 176 Trig 156
04/08 CD4 228 9.5% VL 0
01/08 CD4 194 9.0% VL 0
09/07 CD4 176 8.3% VL 0
03/07 CD4 130 9.5% VL 0 Chol 261  Trig 227
12/06 CD4 109 6.4% VL 0
09/06 CD4  88 5.5% VL und desens'd rtd to Bactrim
08/06  Began Atripla
07/06 CD4  59 5.0% VL 145 Chol 117 Trig 104
06/06  Bactrim rash, X2 Dapsone
 EFV & Truvada Chol 128 Trig 131
05/06 CD4  6 (2.0%) VL 78667 only V179D mutation Dx PC MAC

Offline Winiroo

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  • Positive since 1991
Re: In your opinion, what is a long term survivor?
« Reply #65 on: January 12, 2009, 07:10:37 PM »
But just my experience--not many HIV positive women I've met like dealing with straight HIV positive men.  Seems like there's anomosity that is there from the start, so I just stear very clear

I just had to say I laughed out loud when I read this. Still a little tittering from me. I certainly will make every effort not to be cruel or type anything mean spirited. But man... if the vast majority of positive women you have encountered have come back at you with animosity? My goodness...

From my experience most positive straight women are excited and or glad to meet a positive straight man.
Hell I am glad to meet any positive person as long as they aren't an ass.
That was not directed at anyone. It was a factual statement. Not an attempt to name call.  Certainly not animosity. I was very amused and I enjoy being amused very much.

Just thought I'd share...

Offline LTSurviver

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  • LTS since 1987. LTNP until 2008.
Re: In your opinion, what is a long term survivor?
« Reply #66 on: January 12, 2009, 08:17:21 PM »
What was that song by the Doors?

"Women seem wicked when you're unwanted..."

;)

As a straight HIV+ guy I've never noticed HIV+ women having any animosity towards me.

Offline Winiroo

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Re: In your opinion, what is a long term survivor?
« Reply #67 on: January 12, 2009, 08:24:38 PM »
What was that song by the Doors?


momentary hijack...

The Doors - People are Strange
http://www.youtube.com/watch?v=old6xeBVIfw

Offline LTSurviver

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  • LTS since 1987. LTNP until 2008.
Re: In your opinion, what is a long term survivor?
« Reply #68 on: January 12, 2009, 09:01:00 PM »
Great video, Wendy. :)

Offline denb45

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Re: In your opinion, what is a long term survivor?
« Reply #69 on: January 12, 2009, 09:21:25 PM »
momentary hijack...

The Doors - People are Strange
http://www.youtube.com/watch?v=old6xeBVIfw

Wendy, you make me feel old, Thanks for the memories, Love the Doors, for those of us who remember them, not many of us old timers still around  ;D
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline sharkdiver

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Re: In your opinion, what is a long term survivor?
« Reply #70 on: January 12, 2009, 09:22:24 PM »
So, why don't we get back to the topic?...please

Offline MarcoPoz

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Re: In your opinion, what is a long term survivor?
« Reply #71 on: January 13, 2009, 08:55:47 AM »
Marco, we all know what the Welcome Sticky to this Forum states, that is the reason for this thread; to question the intent of the forum.  Personally, when this forum was created, it was done so with the input of many of the participating LTSers at that time.  When the Welcome Post was created, we had nothing to do with it, and frankly it was changed to open up to all AFTER the forum was created.

Once again, if this really disturbs you, please read the original thread that was the impetus for the creation of this forum, and you can find it in one of the posts above. 

Thank you for your opinion.

No--not disturbed here--just making a point.  When I was newly infected, men and women who had dealt with their own HIV for years helped to piece me back together again.  Now I'm starting my 18th year positive.  I've tried over the years to do the same for others that was done for me.  I see this forum as a place where LTS's can come and talk about our stuff, but also a place where those newly dealing with their status can get some advice.  If I'm wrong in that assumption, I'm sorry.

My goodness...

From my experience most positive straight women are excited and or glad to meet a positive straight man.
Hell I am glad to meet any positive person as long as they aren't an ass.
That was not directed at anyone. It was a factual statement. Not an attempt to name call.  Certainly not animosity. I was very amused and I enjoy being amused very much.

Just thought I'd share...
 

I can't figure out if you're laughing at my experience or at the situation itself?  But, just being honest when I say that where I'm at we've gone through TONS of drama about our hetero support groups.  The only answer anyone wound up accepting was keeping men separated from women.  This was mostly due to a fairly visceral response from women in our groups who defined us as "the guys that infected them".  It wasn't helpful or supportive at all. 

Now this may be something that has only occurred at this place at this time, yet it IS my experience and the experiences of the other local HIV positive straight men and service providers here who attempted to hold these groups.

I personally value an HIV positive woman's perspective as much as I value anyone else's--perhaps more so because it helps me when I try to explore the issues my partner may have been dealing with when she infected me.  I'd like to be able to to discuss these things and get a woman's perspective, but I have yet to find a 'group' where doing so would not create the aforementioned animosity or be seen as "invading' as was defined in this thread.

So we're asked as straight positive men "where" we are, "why don't" we do this or that--get involved etc.  Women want to hear from us??? Really???  So how DO we be "here" and do this or that when we're told NOT to show up?  Kind of circular logic don't you think?  Women want to hear from us, but then say--don't talk to us in 'our' forum because we're protective?  So all men are some type of predator???  See my confusion?

To bring this ALLL back around to the focus of this thread--male, female, gay, straight etc...I like the idea of newbies being able to ask old timers questions--and for us old timers to remember what it was like to newly deal with this issue.   

Offline sharkdiver

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Re: In your opinion, what is a long term survivor?
« Reply #72 on: January 13, 2009, 09:01:32 AM »
I think if a newer infected person wants to as a question, then they can ask it in the Living With Forum.


Offline PRMike

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Re: In your opinion, what is a long term survivor?
« Reply #73 on: January 13, 2009, 09:19:29 AM »
I'm a little confused   ???  was it not the Topic ---  In your  opinion, what is a Long term survivor ? I think that's a question and it invites anyone and everyone to give their Opinion maybe I'm wrong but I think that if your Infected one one second or 30 yrs your entitled to give your opinion...
thank you but that's my Opinion....
PRMike

Offline BT65

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Re: In your opinion, what is a long term survivor?
« Reply #74 on: January 13, 2009, 10:09:39 AM »
Women want to hear from us, but then say--don't talk to us in 'our' forum because we're protective? 

Damn right, we're protective.  There are some women there who aren't comfortable in other parts of the forum.  And I don't want to see them feel like they don't have any place to go to.

Infected one one second or 30 yrs your entitled to give your opinion...

And PRMike, I'm fond of you, but I disagree.  A LTS'er is a LTS'er.  Not someone newly diagnosed.  This is a place for those of us who have been through the trenches of the early HIV/AIDS days to come together to discuss a problem without, oh, fear of having to explain every detail to someone newly diagnosed because they don't know what we're talking about; or wanting to discuss something other LTS'ers have experience with and can give a definite answer without fear of getting an opinion from someone who has not been diagnosed that long who really doesn't have a helpful answer etc. 

Again, a LTS'er is a LTS'er.  It doesn't mean someone who's been diagnosed more recently.  Let the newer diagnosed read this special forum, yes.  But please, don't respond.  If there's a question, pm or put up a post in Living With. 
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Miss Philicia

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Re: In your opinion, what is a long term survivor?
« Reply #75 on: January 13, 2009, 10:19:35 AM »
This isn't rocket science.  Seriously.
"Iíve slept with enough men to know that Iím not gay"

Offline MarcoPoz

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Re: In your opinion, what is a long term survivor?
« Reply #76 on: January 13, 2009, 10:50:46 AM »
Ok, so none of this is really making any sense to me, but no big deal, really.  I'm obviously not seeing the same thing others are.  Not going to extend this thread anymore.  If someone feels they can explain this to me, and wants to PM--feel free.

Peace all-
Marco

Offline emeraldize

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Re: In your opinion, what is a long term survivor?
« Reply #77 on: January 13, 2009, 11:12:38 AM »
I'm a little confused   ???  was it not the Topic ---  In your  opinion, what is a Long term survivor ? I think that's a question and it invites anyone and everyone to give their Opinion maybe I'm wrong but I think that if your Infected one one second or 30 yrs your entitled to give your opinion...
thank you but that's my Opinion....

Point of clarification here. PRMike is correct in relation to Moffie's OP. He clearly invited input, otherwise referred to as "opinion" from anyone, LTS or non-LTS. Otherwise, I wouldn't have posted then, or now.

Offline LTSurviver

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Re: In your opinion, what is a long term survivor?
« Reply #78 on: January 13, 2009, 02:24:33 PM »
I'm new here, so my opinion probably doesn't mean much, but I'd have to agree that an LTS forum should cater primarily to people who were diagnosed during or before the monotherapy years.

It was an entirely different world then and experiences were far different.

My gawd, the hysteria, the fear, the isolation.  It was devestating back then.  Seeing some poor guy on Oprah who was being run out of a town because of his status.  Hysterical idiots claiming they saw him spit on food at the supermarket.  The way even health care professionals would treat you as though you were radioactive.

When I was diagnosed in the Army, they put me alone in a room and people would come in wearing biohazard gear.  I wasn't allowed to leave without a mask on.  And if I dared to cough in the dayroom, the nurses would freak out and make me go back to my room claiming my coughing would infect others.  When I got out I made the msitake of letting people know what was wrong with me.  Weird stares and pointing... I ended up moving after being asked to leave a restaurant when the owner was told about my status by a soldier who worked at the hospital.  That was enough to teach me to keep my status to myself.

And then there was the dread.  You were told to get your affairs in order as you had no more than 5 years to live.  I spent those five years waiting to die.  I'll never get those five years back, either.  I spent the next five years learning to live again, but never escaping the cloud over my head.  And the ten years after that wondering why I wasn't sick while everyone I knew back then from the hospital and support groups had died.

So yes, the experiences are VASTLY different.  While we can relate to you being diagnosed and the experences you may be having now, you can in no way relate to what we've been through and witnessed.

Offline Moffie65

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Re: In your opinion, what is a long term survivor?
« Reply #79 on: January 13, 2009, 04:09:59 PM »
LTS, Your last post laid me out.  Yes, you have just very clearly described why this forum exists, and if some of the membership cannot see the real need for our forum to be private in postings; then I cannot see the reason for the forum to exist at all.

Andy, I trust you are following this discussion, so please feel free to let us know why this forum has to be left open for all to come in and wish us a happy day and a wonderful life, when we have clearly asked them not to participate.  Oh that is right, what we the LTS have asked, is not part of your plan for this place, you would rather have a place where we can dump our shit and then everyone can come on in and make whatever they want of it.  Sorry, this was not the reason for the creation of this forum.
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 hivsweden

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Re: In your opinion, what is a long term survivor?
« Reply #80 on: January 13, 2009, 05:14:44 PM »
It is a bit depressing reading some of the comments here. Some posts give me the sense that some people here use LTS as some kind of "merit badge".

I'd just like to share my 0.02 on the matter and that is that my interpretation of the need for the forum is not so much based on the poster, it is rather based on the topic at hand.

If I were for instance were diagnosed mid 90's and just now started on meds and had questions about meds I wouldn't post here. OTOH if I were diagnosed post-HAART but now having a question about starting my fifth med-combo due to resistance/side effects etc I would post here.

I'd just like to add a reminder that I feel we should SUPPORT each other, not bicker among ourselves.

/Person w. Post-HAART AIDS/PCP-diagnosis 10yrs ago but haven't had any LTS issues yet on my third meds combo

[EDIT] Before responding, please read my next post further down.
« Last Edit: January 14, 2009, 09:19:35 AM by hivsweden »

Offline RapidRod

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Re: In your opinion, what is a long term survivor?
« Reply #81 on: January 13, 2009, 06:02:29 PM »
Quote
If I were for instance were diagnosed mid 90's and just now started on meds and had questions about meds I wouldn't post here. OTOH if I were diagnosed post-HAART but now having a question about starting my fifth med-combo due to resistance/side effects etc I would post here

Why wouldn't you post your question in the "Treatment and Side Effects" forum?
« Last Edit: January 13, 2009, 06:22:27 PM by RapidRod »

Offline Dachshund

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Re: In your opinion, what is a long term survivor?
« Reply #82 on: January 13, 2009, 06:40:20 PM »
It is a bit depressing reading some of the comments here. Some posts give me the sense that some people here use LTS as some kind of "merit badge".



What a condescending thing to say. This is exactly why we ask people that aren't LTS to respect this forum and not post here. The reason you haven't had any LTS issues is because you're not an LTS.
« Last Edit: January 13, 2009, 06:43:09 PM by Dachshund »

Offline sharkdiver

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Re: In your opinion, what is a long term survivor?
« Reply #83 on: January 13, 2009, 06:58:35 PM »
It is a bit depressing reading some of the comments here. Some posts give me the sense that some people here use LTS as some kind of "merit badge".


cruel as well as condescending, wow, just wow

Offline Winiroo

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Re: In your opinion, what is a long term survivor?
« Reply #84 on: January 13, 2009, 07:05:16 PM »

I can't figure out if you're laughing at my experience or at the situation itself?  But, just being honest when I say that where I'm at we've gone through TONS of drama about our hetero support groups.  The only answer anyone wound up accepting was keeping men separated from women.  This was mostly due to a fairly visceral response from women in our groups who defined us as "the guys that infected them".  It wasn't helpful or supportive at all. 

Women want to hear from us, but then say--don't talk to us in 'our' forum because we're protective?  So all men are some type of predator???  See my confusion?


This is off topic but I feel it deserves a responce.
I was not laughing at you. I do not know you enough to be able to judge why you would be getting a negative responce from positive women in a peer or support group. The laughter was more of a "wow that is strange" or "jeez where on earth is this guy" or "this is so opposite of my experience it is astounding"
I find it very odd that women with whom you have never had any sexual relations with would be hostile towards you or treat you as if you where the enemy.  I wonder if these women had mental health issues or if there where other reasons why they would react to you with such anger.
But... this is none of my business so I don't need nor desire you to explain it to me. I am sure you don't even comprehend why you where made to feel like an outsider. So an explanation would not be possible anyway.

As to why women would not want men to post in the women's forum. Women are social creatures. We often need to spend time with other women and feel free to talk about issues that only apply to women. If you add a man into the mix the conversations that women have amongst each other generally will not be the same.
I usually only post in the ladies section of AIDSmeds. It is more comfortable for me. In the ladies section I never have to worry about a man coming on to me or taking an innocent conversation and turning it into something sexual. I love men. I enjoy talking to them, but I am in a monogamous relationship and dealing with these issues can and does get annoying at times. I'm sure you understand.

I am sorry that your experiences with hetero support or social groups has been negative. Mine has been a very wonderful addition to my life. As a group we never sit around pointing fingers or playing blame games. We simply enjoy each others company.

As to the topic. I feel the definition of what a LTS is has been pretty much agreed upon for the most part. From what I have read the vast majority of responders believe a LTS is a person who has been positive for many years and has experienced changes in HIV treatment and has problems that many newly infected persons have not experienced yet.
I doubt that the LTS forum would be able to be policed for persons who are not considered LTS. I'm not really even sure it would be necessary. There are many things as positive persons we can relate to each other with but there are things that only persons who have been infected a considerable amount of time would have experienced.  In general of course. There is always someone out there to break the mold.

BTW I don't have a merit badge but I do have a dead husband, dead child, I have seen the clients of my clinic change in demographics, I have been as low as 3 tcells and bounce back up to 700 to go back down to 22 tcells and too numerous of illnesses to even begin to convey. I dont want a merit badge nor an appology but respect for what I have gone through would be appreciated.

Offline Dachshund

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Re: In your opinion, what is a long term survivor?
« Reply #85 on: January 13, 2009, 07:22:54 PM »

BTW I don't have a merit badge but I do have a dead husband, dead child, I have seen the clients of my clinic change in demographics, I have been as low as 3 tcells and bounce back up to 700 to go back down to 22 tcells and too numerous of illnesses to even begin to convey. I dont want a merit badge nor an appology but respect for what I have gone through would be appreciated.

Finally someone said it. I think this defines the LTS to it's core. Witnessing death and more death, of friends, family and lovers and being helpless to do a thing about it. Entering the dark tunnel of death and coming out the otherside alive wondering why you were spared. Yep, maybe without even knowing it, Winiroo just described a Long-Term Survivor.

Offline RapidRod

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Re: In your opinion, what is a long term survivor?
« Reply #86 on: January 13, 2009, 07:25:54 PM »
Finally someone said it. I think this defines the LTS to it's core. Witnessing death and more death, of friends, family and lovers and being helpless to do a thing about it. Entering the dark tunnel of death and coming out the otherside alive wondering why you were spared. Yep, maybe without even knowing it, Winiroo just described a Long-Term Survivor.

I guess the pretty well does describe it to a T..

Offline Winiroo

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Re: In your opinion, what is a long term survivor?
« Reply #87 on: January 13, 2009, 07:38:19 PM »
Thank you for allowing me to vent and thank you for your support.

Offline LTSurviver

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Re: In your opinion, what is a long term survivor?
« Reply #88 on: January 13, 2009, 08:26:06 PM »
Merit badge???  I will admit, this made me angry, but I'll let that go...

This is why you'll NEVER understand.  I guess I just didn't get the experience across in my post well enough for you to understand.  Maybe it's impossible to do so.  Just please try to understand that what happened then is completely different compared to what is happening now.  It's an experience you should be VERY grateful you'll never have to go through.

Hell, even though I'm an LTS of 22 years... being straight, I'll never understand the amount of loss people in the GLBT community suffered.  I've only lost friends from support groups and clinics.  They lost entire communities and partners.  NEVER would I consider their experience a "merit badge."  I would, however, respect it as something I could never fully grasp.

As for the women's support group, Windy has it right.  Let's face it, men are very aggressive sexually and sometimes women just need a break from that... Just like men need a break from women occasionally so we can burp, fart, leave the toilet seat up and make sexist jokes without guilt. ;)

But Marco is partially correct.  I have witnessed the man hating a minority of HIV+ women go through.  An ignorant bigotry, to be sure, but it's a minority.  Let's face it, though... there will always be women who go through life bashing men and blaming all men for their own bad choices in men.  You don't have to go to an HIV support group to see this.

In death, there are only victims... In life there are victims, and survivors.  Thankfully you get to choose which one you want to be as long as you're still breathing.

Offline LTSurviver

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Re: In your opinion, what is a long term survivor?
« Reply #89 on: January 14, 2009, 07:16:43 AM »
I hope I didn't offend anyone with my last post.

Offline hivsweden

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Re: In your opinion, what is a long term survivor?
« Reply #90 on: January 14, 2009, 08:00:30 AM »
I'd like to start this post by saying that I'm truly sorry to have offended some people here. This wasn't my intention and re-reading my post I can see how my message came through in a different way than I intended.

I have the highest respect for those who have lost dear ones, felt the despair and agony of being infected with an incureable disease with a not so nice ending. I feel respect for having been able to cope with being treated like plague patients during the dark ages.

I did not mean to belittle anyones experiences.

However, I'll try to rephrase what I meant by my somewhat insensitive remark. I understand the need to have a special forum to discuss issues that are specific to LTS and I feel that is truly educating to read many of the posts here.

But I did get a feeling that some LTS:ers have an attitude toward us who haven't "been there" which makes me feel a bit less "worthy" (sorry, I can't quite find the word I want to use as English isn't my first language).  Instead of explaining I used a phrase which I shouldn't have.

Please accept my apologies.

Offline Moffie65

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Re: In your opinion, what is a long term survivor?
« Reply #91 on: January 14, 2009, 08:38:24 AM »
Sweden, I certainly accept your apology, and your explanation helps us to all understand both your viewpoint and your understanding of the need for this forum. 

I find that many of us in this thread have had real difficulty in drawing out a picture of just why we really need a place that is sanctuary from the hordes, but with all the heartfelt posts in this thread so far, I think it has become really clear just who should be welcome in this forum.  Amazing just how parallel our lives are, and for us to simply think this is going to be a Gay forum is blatantly wrong, based on Winniro's and Surviver's posts.  It is refreshing for me to read intelligent posts from our hetero brothers and sisters that are not condescending and softly gay bashing, which I see so much in the last two years in this website.  I know that there are many straight people who want to still hold us accountable for their infections, but that is because they don't know the facts that only in Europe and the U.S. is HIV a more Gay disease, and that globally this disease is and always has been a largely heterosexual disease. 

Anything that promotes a calm and level playing field for all of us to commiserate should be the parameters for this forum and I think that is perfectly clear. 
« Last Edit: January 14, 2009, 08:41:07 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 LTSurviver

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Re: In your opinion, what is a long term survivor?
« Reply #92 on: January 14, 2009, 09:07:24 AM »
hivsweden,

I too accept your apology and know you didn't mean to offend as you don't understand.  How could you?  It's like trying to understand a war vet or a holocaust survivor when you've experienced neither.

It's not that STS folks aren't "worthy."  It's that they have not been through what we have been through, and that makes them more likely to say and do things that tend to peeve LTS folks.  That's all.   The LTSers here just wanted a forum in which they could have a little gathering to chat.  The rest of the forum here is wide open to anyone.  They just wanted a little corner of their own and as an LTSer myself, I can see why. 

You are worthy.  Everyone is.  Sometimes people just want to chat with those who have been through what they have been through, that's all.

Offline sharkdiver

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Re: In your opinion, what is a long term survivor?
« Reply #93 on: January 14, 2009, 09:30:35 AM »
Wendy,

Thank you for your post.

I was deeply moved.

Sharkie

Offline AlanBama

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Re: In your opinion, what is a long term survivor?
« Reply #94 on: January 14, 2009, 10:23:12 AM »
I was also deeply moved by your post Wendy.    Thank you --

hivsweden, thanks for the apology.

You see, a lot of the newer folks seem to think that this is a good forum for them to come and ask us questions about our experiences with this or that.....but the point is that we do not WANT to anwer your questions in this forum.  Ask them in Living With, or as Sharkie has requested, through PM's.

We want this forum to communicate/commisserate with each other.  Period.   I have to agree with big daddy here, this thread deserves a response from management.   I would respectfully ask them to carefully consider their reponse to our request(s), because for some of us our ties to AIDSmeds have become as fragile as spider web strings.

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 aztecan

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Re: In your opinion, what is a long term survivor?
« Reply #95 on: January 14, 2009, 10:27:42 AM »
Alan,

I think you have hit the nail on the head.

HUGS,

Mark

"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline leatherman

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Re: In your opinion, what is a long term survivor?
« Reply #96 on: January 14, 2009, 11:02:35 AM »
In pondering this, I got to thinking that even the definitions we've put forth here, and the moniker "LTS", don't really accurately describe us.

Would you say that someone HIV+ that will have been on Atripla for 10 yrs, reached undetectable easily, with high cd4s, no side effects, etc, never reaching an AIDS diagnosis (someone with the proverbial "chronic manageable illness") is going to have the same issues as someone who has gotten an AIDS diagnosis, who started with AZT, went to 32 pills a day, been hospitalized, become resistant to many of the older meds, etc,? Will that person on Atripla be a called a "long term survivor" one day or just someone who took medication to manage an illness?

But what about the person that was diagnosed with AIDS, say only about 4 yrs ago, when they landed in the hospital with an OI, who suffered with many side effects during their recovery time and now they're having resistance issues/lipo/PN/etc? Aren't they already having what we've been describing here as "long-term" issues? Or do they need to wait another 6 yrs.to participate in this forum?

It seems that we are only using the term "long term" because we survived all those who passed on early in the epidemic, not really because we have lived with HIV/AIDS for so long. If 10 yrs is the qualification, then in a few more years, this forum will be full of people who have never heard of PN, or have gastro issues, or lipo. In reality, aren't we really "issue survivors"? We've survived the first meds, the OIs of an AIDS diagnosis, the deaths of those around us, resistance issues, hospitalizations, and now we're still here and dealing with health issues due to early meds, side effects and/or extreme illness. (perhaps this could be called a "nearly-terminal chronic hard-to-manage illness"?)

As I said earlier, the "LTS" experience will always be different from the "newbie" experience because of the improvements in medical treatment of this disease. It's all about the cycle of an epidemic. Many of the first wave of infected in an epidemic die quickly. The second wave survive longer (but with problems) as medical conditions begin to make some advances. As long as there are propers meds developed, the following waves goes on to transform the terminal illness into a chronic manageable illness, and the final wave are those infected/diagnosed after a cure has been found.

For all we know the people who have been diagnosed and/or started treatment in more recent years may never have any issues similar to the current "LTS"s and won't even be considered a long-term survivor after 30 years. (just as we don't talk about "diabetes survivors"). Or they could develop a whole new set of troublesome side effects 20 yrs in the future that we LTSs may never have. In that case, I think they will have to give themselves their own moniker and forum in 20 yrs if/when they begin to have issues.

I think a good definition for LTS is going to have to not only contain a time qualification (be it a time period ie 1980-2000 or a time span ie 10 yrs), but also issue qualifications (OI, hospitalizations, etc).
leatherman (aka mIkIE)


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

Offline BT65

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Re: In your opinion, what is a long term survivor?
« Reply #97 on: January 14, 2009, 11:03:11 AM »
Well said, Alan.  Here, here.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Winiroo

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Re: In your opinion, what is a long term survivor?
« Reply #98 on: January 14, 2009, 11:06:24 AM »
Apology accepted.
I am nearing the birthday of the child I lost and holidays have just ended. Y'all caught me on the tail end of some emotional and stressful times and my mouth tends to run off more than usual during times like this.  :-*
I think I have said enough on the topic at hand and I don't feel I can add anything else constructive to this thread for the time being so I will be reading but I doubt I will make any more responces on this thread.

Offline Peter Staley

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Re: In your opinion, what is a long term survivor?
« Reply #99 on: January 14, 2009, 01:05:12 PM »
Sadly, this thread has become very Jekyll and Hyde to me.  While I always like seeing a healthy discussion about the nature of our forums and ways to improve them (especially the LTS forum, since I'm one too!), it's sad that the OP has used this thread to maliciously rewrite history as to this forum's creation, and to accuse the mods of things we never did.

Let me try to correct the record.

While this thread seemed to start innocently enough, with the OP asking folks how they defined an LTS, his true intent eventually spilled out (my bolding added):

Marco, we all know what the Welcome Sticky to this Forum states, that is the reason for this thread; to question the intent of the forum.  Personally, when this forum was created, it was done so with the input of many of the participating LTSers at that time.  When the Welcome Post was created, we had nothing to do with it, and frankly it was changed to open up to all AFTER the forum was created.

Fact:  The Welcome Thread has never been changed, and was written before the forum's launch.  It was the first thing posted to the forum (time stamp: April 10, 2007, 09:26:16 am), and you'll notice there is no "Last Edit:" line at the bottom (like most of our other Welcome messages), proving that it's never been changed. 

What possible motive would we have in surreptitiously changing the original intent of these forums without notifying it's members?  Why was this accusation made?

the whole reason for the forum is negated by the "Come one Come all" input from the mods.


WTF?  Where did the mods start saying this? 

While it's true the Welcome statement isn't as restrictive as the one in the Women's forum, this was only because of the original discussion that led to the creation of this forum -- not because the mods somehow snuck it in.  I'd ask everyone to reread this entire thread, started by Joe Killfoile on April 6, 2007:

http://forums.poz.com/index.php?topic=11021.0

Joe took the first public step of asking for the creation of this forum (although others, including Ann, had mentioned the idea almost concurrently through emails and PMs).  The thread, like this one, had lots of opinions on who this proposed new forum was intended for (older members, those living a long time with the virus, those on treatment a long time).  For instance, when an older member pointed out that he was dealing with a lot of the same health issues as traditional LTS's, but was more recently infected, no one told him he wouldn't be welcome.

As the thread progressed, Joe kept steering it back to his original intent, with comments like these:

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 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.

...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.

Again, please read the entire, two-page thread.  There was never a consensus expressed that a hard litmus test was going to be imposed in the new forum.

Our Welcome thread was posted from day one, and no one complained at the time.  I still think it accurately reflects the consensus that developed in Joe's thread.

In fact, Moffie posted the first thread in the new forum, titled "Thank You, Peter" (http://forums.poz.com/index.php?topic=11167.0), which included a few posts thanking us for the Welcome Thread!!

My thanks to you too, Peter, and I really like the wording of the Welcome post.

Thank you all for supporting the creation of the new forum and as Daniel mentioned, I REALLY LIKE the introduction post and I appreciate the consideration and compassion in your creating this new forum.

Followed by my reply:

Thanks, everyone -- glad we could make this happen. 

You can thank Andy for the welcome thread -- he wrote the first draft.  He wrote a great one!

The first time anyone complained about the Welcome Thread was two months ago, when Moffie sent Andy Velez some PMs.  I'm not in the practice of cutting and pasting PMs into public boards (I think it stinks when people do this, frankly), but we did respond to Moffie at the time.  He wondered if we had changed the rules of who could post in this forum.  We referred him to the original Welcome Thread, and told him it had never been changed.  We asked him to point out specific threads that needed our attention as far as out-of-line newbies encroaching here, and he never sent us any.

He asked us to change the Welcome Thread, but we didn't see the need, and we still don't.

As Ann mentioned above, on the very rare occasions that we get a mod report from this forum, it's almost always about a lost newbie who innocently started a thread in the wrong forum -- we promptly move these.

Again, Moffie blames us instead (my bolding added):

I am certainly willing to help out here and do what Ann has suggested, due to the increasing size and workload for the Mods.  However, when we do identify and report an infraction, the mods have to respect our wishes and get them out of here.  I have not had that experience so far, because usually when I report, the mod gets back to me with "In the Welcome thread we have determined that anyone can post in LTS", which is what I call a verbal "slap in the face"!!!

Hence those of us for whom this forum was created have been FORCED not to be comfortable using this forum by the very moderators and owners who created it.  I think that is shit in the face  and incredibly disrespectful.


In fact, I can't remember the last time we've received a mod report about inappropriate newbie replies in this forum (as opposed to new threads).  I did notice one myself last week, and issued a prompt warning (http://forums.poz.com/index.php?topic=25133.msg315599#msg315599).

You see what this is really about now?  It's all about Moffie's PM exchange with Andy back in November, when he didn't get the answer he wanted.  This thread is his response to (and revenge for?) that exchange.

So even though this thread includes a good discussion about the nature of this forum, I'm still left feeling a very human emotional response.  I won't be bullied.

I can't pretend to read Moffie's mind, so I don't know why he continually reverts to attacks on the mods.  All I know is that I'm tired of them, and am at the point where I don't want to listen or respond to his complaints anymore.

Maybe someone else would consider starting a new thread that approaches this subject from a more truthful angle -- something that seeks to improve this forum, rather than process some personal vendetta.

Peter

 


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