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Author Topic: In your opinion, what is a long term survivor?  (Read 43978 times)

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Offline Moffie65

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In your opinion, what is a long term survivor?
« on: January 09, 2009, 04:15:12 PM »
Since returning to the forums, I have noticed time and time again that this forum is presented as a "Long Term Survivors'" forum; however I have also noticed that everyone and anyone is free to post here, based on the posts I've seen and read. 

I consider an LTSer as someone who has been HIV+ for 7 or 8 years at a minimum, but of course that is not etched in stone anywhere, even my brain.  So, the reason for this thread is for you to give your opinion and let's see what shakes out.  I guess I should say that all are invited to answer in this thread, as it is important for me to see what people who have been HIV+ for just a short time have to say and feel about this subject.

Thanks for posting your thoughts.
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 leatherman

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Re: In your opinion, what is a long term survivor?
« Reply #1 on: January 09, 2009, 04:57:55 PM »
I guess I should say that all are invited to answer in this thread, as it is important for me to see what people who have been HIV+ for just a short time have to say and feel about this subject.
however, if those people are already staying away from this forum, we'll never get their opinions. ;)

my opinion of an LTS:
"long-term" means roughly 10 yrs or more because, quite frankly, there is a huge difference in the treatments from the early 90s to the 00's. If you've been diagnosed and started treatment in say the last 6 yrs or so you've been on some sweet meds, nothing like the crap we took nearly 20 yrs ago.

"survivor" - that means you have had a difficulty that you have had to survive - an OI, a hospitalization, the hassles of going onto disability and/or getting assitance, losing a partner/spouse to this disease, etc. Without being on meds or having an AIDS-defining illness, what was there for you to "survive"? Life? Everyone has to deal with that burden. ;)

LTNPs are the rare exceptions. Even if they haven't had an OI or been on meds, they deserve some recognition for living with HIV for so long. ;)
leatherman (aka mIkIE)


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

Offline anniebc

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Re: In your opinion, what is a long term survivor?
« Reply #2 on: January 09, 2009, 05:06:44 PM »
When the forum was first up and running I thought and believed it was for all those all had survived the horrors of the 80's and early 90's..to me that is a LTS...and personally I don't think anyone under 10 years is a LTS..and that is just my opinion, I've coming up to 7 years and certainly don't class myself as a LTS.

I know there are quite a few here who have been living with this virus for just a few years but found out their diagnosis because of PCP and survived this, and I know this is no mean feat, I know how sick and how hard those who went through this fought and survived, so yes they are survivers..but LTS? I'm not sure, this has always been a grey area for me,  it will be interesting to hear what others think about this.

I know this can be a touchy subject but please keep this debate civil and respectful..thank you.

Jan
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline Miss Philicia

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Re: In your opinion, what is a long term survivor?
« Reply #3 on: January 09, 2009, 05:42:49 PM »

I know there are quite a few here who have been living with this virus for just a few years but found out their diagnosis because of PCP and survived this, and I know this is no mean feat, I know how sick and how hard those who went through this fought and survived, so yes they are survivers..but LTS? I'm not sure, this has always been a grey area for me,  it will be interesting to hear what others think about this.

I'd probably argue that such people have been living with HIV quite a long time and just weren't aware of it, assuming of course that when they were diagnosed that had been their first HIV test.  You could easily assume a 10 year infection if you're diagnosed with 5 t-cells.  Of course, that's just an assumption.

Otherwise to answer the OP, I generally go with 10 years just because it's an easy number, and at least up to a few years ago it grouped those patients that began treatment pre-HAART together.  I'm now of the mind that the longer we go on into this epidemic, that there will always need to be a special pre-HAART grouping, so in fact that might even need to be seen as a subset of LTS, if that makes any sense.  90% of the attendees in my real life LTS support group are pre-HAART'ers, most with multiple resistance issues and other long term side effect complications.  Of course, the issue isn't about creating some elitist club, it's about real issues like that.
« Last Edit: January 09, 2009, 05:47:52 PM by Miss Philicia »
"Iíve slept with enough men to know that Iím not gay"

Offline Moffie65

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Re: In your opinion, what is a long term survivor?
« Reply #4 on: January 09, 2009, 05:48:05 PM »
Yes Ms. Philicia, but I know of a few who have developed PCP because they were IDUs and had no immune system when they got infected, so they were only infected a short time, but developed PCP really early.  This also makes a wrinkle that would have to be worked out. 

Your point is also mostly true, so one would have to have figured out just when they went through Seroconversion, but only if they were consious of their health along the way.   

Really good point however.
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 #5 on: January 09, 2009, 05:53:51 PM »
Yeah, I was just kind of projecting from my own situation.  I was probably a LTS way before I saw myself as one, because I was one of those that procrastinated getting tested until I had AIDS.  So looking back I was a 10-year LTS just 4 years after diagnosis, though in fact I didn't really begin to think of myself in such terms until a further 6 years, even though if I'd gone by the 4 year post-diagnosis that lines up to when I began having lots of medical issues.

Of course, this issue is impossible to accurately define but it had always been my understanding that for the purposes of this specific forum we were aiming for a decade of infection.
"Iíve slept with enough men to know that Iím not gay"

Offline PRMike

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Re: In your opinion, what is a long term survivor?
« Reply #6 on: January 09, 2009, 06:10:16 PM »
Hi I also would have to agree with the amount of at least 10 years because back in the 1980 when I first saw my first Aids Patient when I was in the hospital kicking Dope and no one would talk to this guy and of course I did not know why until after he had died,, I'm sorry  I got off tract because it took me back,,, I have seen a lot of people come and go and I know of a few that are still around like me that have over 25 yrs living with Hiv/Aids and we are considered LONG TERM SURVIVORS at least that's what my Doctor has told me not to mention a Miracle Child  LOL
I have been told that I have a purpose in this world and thats why I must live on,, so I guess it might be to spread the word about staying DRUG FREE  who know's I night save a LIFE...  anyway that's what I think
PRMike

Offline YaKaMein

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Re: In your opinion, what is a long term survivor?
« Reply #7 on: January 09, 2009, 06:58:16 PM »
IHMO, I like the idea of being a 'newbie', I feel younger!! ;D

I look forward to becoming an LTS someday. It will be another badge earned.

BTW, Am A-OK to respect the few forums, like poz women, since I'm male, where I'm asked not to post ... but I do read through them. 

Hats off to the 'Am I nfected?' forum moderators-- how the hell do Andy, Ann, Jan, Rapid, Matty, et al do it AND keep their cool? 
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 RapidRod

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Re: In your opinion, what is a long term survivor?
« Reply #8 on: January 09, 2009, 08:14:18 PM »
IHMO, I like the idea of being a 'newbie', I feel younger!! ;D

I look forward to becoming an LTS someday. It will be another badge earned.

BTW, Am A-OK to respect the few forums, like poz women, since I'm male, where I'm asked not to post ... but I do read through them. 

Hats off to the 'Am I nfected?' forum moderators-- how the hell do Andy, Ann, Jan, Rapid, Matty, et al do it AND keep their cool? 

Andy carries a big bat and Ann wears a size 12 combat boot with steel toes. I take the drugs that Jan is suppose to be giving her animals to keep them calm.  ;)

Offline BT65

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Re: In your opinion, what is a long term survivor?
« Reply #9 on: January 09, 2009, 08:28:04 PM »
I consider a LTS to have been diagnosed for +10 years.  I also like Ms. Philicia's comment about those of us who started treatment pre-HAART, and survived all those nasties.  Of course, we can't exclude LTNP's, who lost loved ones to this disease.  So, +10 years, IMO.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline aztecan

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Re: In your opinion, what is a long term survivor?
« Reply #10 on: January 09, 2009, 08:50:18 PM »
I thought about this and think 10+ years is a good measure of a long termer.

I feel a bit guilty because I didn't have any OIs or any serious problems during the 11 years I had the bug prior to going on meds.

But I have been on meds for very close to 13 years now and have some nifty side effects from them and/or the virus. Does that count?  ;)

HUGS,

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

Offline Assurbanipal

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Re: In your opinion, what is a long term survivor?
« Reply #11 on: January 09, 2009, 08:53:51 PM »
Since Tim has invited general participation...

The problem is that "long term survivor" doesn't define a group very well.  It could mean
a) People who are relatively old
b) Since this is a forum related to HIV, people who have lived with/ been infected with HIV a long time.  (This would include those late diagnosed and those who are LTNP's)
c) Those who have lived with an HIV diagnosis for a long time (including the LTNP's but excluding the late diagnosed)
d) Or since this is an AIDSMEDS forum, it could be those who have taken AIDS meds for a long time (excluding the late diagnosed and most LTNP's except a couple who started meds and then stopped)

The welcome thread is vague.  It implies that the definition for these purposes is mainly (b) but sometimes (a). 

While you were away, Andy started a thread on this topic that drew a very passionate discussion with an apparent consensus on definition (c).  http://forums.poz.com/index.php?topic=20519.0  But the welcome thread was never changed.

So, as a late diagnosed older person who has been hospitalized with various OI's
 -  I always read this forum.  It has some of the most interesting, knowledgeable and fun people on this site.  And the discussions about aging with HIV are very directly useful to me.
 - I don't start posts here
 -- I try only to comment in the forum when the original poster is someone else who is late diagnosed.   If I have something to say and the original poster is someone who has been diagnosed for a long time I send a PM. 

But if this thread arrives at the same consensus as the prior one, perhaps the moderators could revise the welcome thread?

A
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline RapidRod

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Re: In your opinion, what is a long term survivor?
« Reply #12 on: January 09, 2009, 09:53:56 PM »
I believe this forum was actually setup for those that have been infected for years so that they could have a forum to discuss their issues with HIV and treatment and other illnesses that they have or had and not to be combined with the newbies. I believe it was Tim and some others that asked for the forum to be created. I'm sure it's in the archieves somewhere.

Edited to put include the proper folks that suggested it.  http://forums.poz.com/index.php?topic=11021.0
« Last Edit: January 09, 2009, 10:02:29 PM by RapidRod »

Offline AlanBama

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Re: In your opinion, what is a long term survivor?
« Reply #13 on: January 09, 2009, 11:15:56 PM »
I think 10 years is a good benchmark number.   That's 10 years of being diagnosed and LIVING with HIV/AIDS.  Of course, the pre-HAART folks have other issues (hard for me to believe someone diagnosed in 1999 is a 10 yr LTS! My how time flies) but I think 10 years is just a good common sense number.
"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 leatherman

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Re: In your opinion, what is a long term survivor?
« Reply #14 on: January 10, 2009, 12:15:35 AM »
Of course, that's just an assumption.
oh, let's not use that assumption. :D That would mean I've probably lived with this damn bug 26 years. ::)

Though in truth, that's probably how long I really have had this. I took my first (and only) hiv test in 92. Since my first partner passed away 18 months later and I was in the hospital a year after that (cd4<10; vl>800,000), we had both already been infected for a quite a while. I have always assumed it was already AIDS when that poz result came back. That timeline would also coincide with the time I first met up with my first partner.

But if this thread arrives at the same consensus as the prior one, perhaps the moderators could revise the welcome thread?
i just re-read through that thread and was just wondering what you thought the "consensus" was? I mainly read us bitching about azt  ;D

I believe this forum was actually setup for those that have been infected for years so that they could have a forum to discuss their issues with HIV and treatment and other illnesses that they have or had and not to be combined with the newbies.
one of the biggest reasons I like this site is because LTSs do get their own space around here. That just means that there are people around here who have been through some similar situations to ones I've been through. In the long run, the hiv treatment I received in the last 15 yrs is vastly different than the treatment someone will receive diagnosed today. My hiv experience will always be different from their experience because time has passed and medical science has advanced. They will never have the problems and issues an LTS does.

Eventually the newbies today will become LTSs in the future (maybe they'll have to wait 20-30 yrs to move into that group due to the better meds); but they'll still never have the type of experience the LTSs of today have had.
leatherman (aka mIkIE)


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

Offline emeraldize

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Re: In your opinion, what is a long term survivor?
« Reply #15 on: January 10, 2009, 05:33:44 AM »
however, if those people are already staying away from this forum, we'll never get their opinions. ;)

my opinion of an LTS:
"long-term" means roughly 10 yrs or more because, quite frankly, there is a huge difference in the treatments from the early 90s to the 00's. If you've been diagnosed and started treatment in say the last 6 yrs or so you've been on some sweet meds, nothing like the crap we took nearly 20 yrs ago.

"survivor" - that means you have had a difficulty that you have had to survive - an OI, a hospitalization, the hassles of going onto disability and/or getting assitance, losing a partner/spouse to this disease, etc. Without being on meds or having an AIDS-defining illness, what was there for you to "survive"? Life? Everyone has to deal with that burden. ;)

LTNPs are the rare exceptions. Even if they haven't had an OI or been on meds, they deserve some recognition for living with HIV for so long. ;)

Given Moffie's and Leatherman's quotes, I can comfortably reply although I am only at the 5.5 years mark. I read LTS threads periodically for education and inspiration, but have never (I think I can certifiably state that) posted in this forum as I always respected it was for those defined as Leatherman has done so above. I'm considered an LTNP, but strangely of the short-term ilk (I qualify from a reseacher's perspective in terms of CD4/VL but not the longheld definition of sustained numbers for 7-8 years) and have always minded RapidRod's experience (a very lengthy LTNP-like run that ceased abruptly) as my reality guidepost labeled " Beware. There are no guarantees here." And, I will now continue as I have, to stop by every so often, read, and move on.  However, do I hope/intend to be able to post in 4.5 years? Short of a cure and consequently no reason or place to post, then to quote Sarah, "You betcha!"   Em
« Last Edit: January 10, 2009, 05:37:19 AM by emeraldize »

Offline Dachshund

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Re: In your opinion, what is a long term survivor?
« Reply #16 on: January 10, 2009, 08:06:12 AM »
Seems pretty clear to me, but if someone has to ask if they're a Long-Term Survivor, then they ain't.

I'm going with pre-HAART as probably the best description to me of who a LTS would truly be. Anyone living with known infection, knowledge and the personal horror of AIDS prior to 1998. It's a small group here in the forums (and you know who you are) but we need no description to define ourselves. We just know.

Frankly, I'm a bit surprised why people find this particular forum so fascinating? Don't get me wrong, it's my fave, but if reading the ramblings of an old queen or where to find cheap shoes for PN turns you on, have at it. :D

Oh I know, people will say what about this or what about that and the debate will go on. But if you have to ask, you ain't.
« Last Edit: January 10, 2009, 08:09:00 AM by Dachshund »

Offline Moffie65

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Re: In your opinion, what is a long term survivor?
« Reply #17 on: January 10, 2009, 09:46:22 AM »
Edited to put include the proper folks that suggested it.  http://forums.poz.com/index.php?topic=11021.0

I just read the complete thread, and it was clear in that thread what a LTSer was and is.  Now if we can only return this Forum to that which it was created, this particular thread wouldn't be needed. 

For the life of me, I cannot remember when this forum was opened up for everyone to participate, but it is clearly not what the original intent was, and is probably the reason for the sharp decline in participation that is currently the norm.  I think that anyone interested in asking us LTSers questions regarding a subject read in this forum can easily ask that question in the Living Forum by simply referencing the subject to a thread in the LTS Forum.  That cannot be rocket science, since links are always popular with everyone. 

I still think this forum should ONLY be for LTSers, and not allow just anyone to come in the preach, advise, or question our experiences.  It just makes it very uncomfortable. 

By the way Hal, I just was about to create a new post about some new shoes I found that were comfortable from day one, and are now starting to fill my closet.  They are fabulous, and I will post all the information in the PN thread when I take photos of them.  Not unlike many of you, my closet is overflowing with shoes that were wonderful when purchased, but didn't feel like much more than fires on your feet after about a month.  I have been waiting to see if these really worked, and then I will post on them.
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 BT65

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Re: In your opinion, what is a long term survivor?
« Reply #18 on: January 10, 2009, 11:01:01 AM »
I still think this forum should ONLY be for LTSers, and not allow just anyone to come in the preach, advise, or question our experiences.  It just makes it very uncomfortable. 

I agree 100%.  And I can't wait to hear about the shoes.
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 #19 on: January 10, 2009, 11:51:20 AM »
I'm glad I can still wear all of my shoes :) ~~
"Iíve slept with enough men to know that Iím not gay"

Offline AndyArrow

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Re: In your opinion, what is a long term survivor?
« Reply #20 on: January 10, 2009, 02:54:42 PM »
I suppose as time marches on that 10yr benchmarch will be changed to 15.  I would hope people would respect that title of the forum.  I'm not sure why that's so hard for some people to do.  I've never felt the need to read or post in the women's forum for that very reason.

Between this thread and reading about Ray's cold I realized it's about time for a pneumonia shot again.

I too can't wait to see pics of the new shoes.  During the winter I'm usually wearing those funky slipper socks that I have amassed from all the hospital stays. And so no one is horrified I thought I should mention that I only wear them in the privacy of my own home.

Just my thoughts ... feel free to ignore any that you dont' like.   ;)
AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline Miss Philicia

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Re: In your opinion, what is a long term survivor?
« Reply #21 on: January 10, 2009, 03:17:49 PM »
All of my "shoe issues" are really more caused by have so many calluses on my soles that I chalk up to the lack of any fat there due to lipoatrophy.  It's actually really bad, and has been like that for an entire decade, but I just grin and bear it.  My PN doesn't get involved, but then my PN seems a bit different than what most people get, consisting mainly of sharp jolts of electrical sensations but only sporadic -- I have none of the continual numbing feelings or pins and needles thankfully.
"Iíve slept with enough men to know that Iím not gay"

Offline AlanBama

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Re: In your opinion, what is a long term survivor?
« Reply #22 on: January 10, 2009, 04:56:29 PM »
Seems pretty clear to me, but if someone has to ask if they're a Long-Term Survivor, then they ain't.

Testify honey.

I am also puzzled as to WHY anyone who is not a LTS would want to post here.  What's the 'strange fascination' with us?  It's like we are in a side-show or something.   It's like when I was 10 years old and went to the state fair, and paid a quarter to see Myrtle the Turtle girl.  It was a big tortoise shell with a bleached blonde woman's head poking out of it.  I tried to talk to her....the barker said "Please do not attempt to speak to the turtle girl"   So I stuck my tongue out at her instead....

So, "please do not attempt to speak to the Turtle Girl(s)"       LOL

« Last Edit: January 10, 2009, 04:58:09 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 YaKaMein

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Re: In your opinion, what is a long term survivor?
« Reply #23 on: January 10, 2009, 05:03:00 PM »
Again, I'm chiming in here since the OP invited ALL for opinions.

Let's not draw too many lines in the forums sand!
I suppose as time marches on that 10yr benchmarch will be changed to 15. I would hope people would respect that title of the forum.  I'm not sure why that's so hard for some people to do.  I've never felt the need to read or post in the women's forum for that very reason.

Is it being implied that those with <ten [10] yrs post diagnosis ...  to stay away entirely? 
ONLY those with 10yrs+ can even READ LTS threads ..... seriously?  I hope not.
[a] It's a silly demand that should be ignored. Reasonable not to post in certain forums, but not to read them?
LTS forums and others have a wealth of knowledge, experience, and inspiration to offer.

I fully agree, respect and support LTS need and deserve a special place.
I still think this forum should ONLY be for LTSers, and not allow just anyone to come in the preach, advise, or question our experiences. It just makes it very uncomfortable. 

I can live with Assurbanipal & emeralized's posts here without problems.

Suggestion:
Recent posts in LTS like those on taxes and disability that are pretty generic to 'Living with HIV" and little to do with specific LTS issues per se. When these appear, let's agree to ask them to be moved elsewhere. This may help to reduce us newbies from posting in LTS. Even though, we don't have the 'eligible' years for the LTS HIV experience, we have knowledge about many topics too, LOL

Now, back to the Infected?, poz Women, and other forums ... mindfully reading but NEVER posting unless invited.
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 RapidRod

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Re: In your opinion, what is a long term survivor?
« Reply #24 on: January 10, 2009, 05:07:27 PM »
Quote
Is it being implied that those with <ten [10] yrs post diagnosis ...  to stay away entirely? 
ONLY those with 10yrs+ can even READ LTS threads ..... seriously?  I hope not.
[a] It's a silly demand that should be ignored. Reasonable not to post in certain forums, but not to read them?

No, it is asking them not to post is this forum.

Offline Miss Philicia

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Re: In your opinion, what is a long term survivor?
« Reply #25 on: January 10, 2009, 05:28:04 PM »
Clearly one can't enforce a restriction on reading threads in ANY forum -- whatever gave you the idea that someone was promoting that?  Sounds nonsensical.

And there's really no need for a thread, initiated in LTS by a LTS to be moved anywhere else.  If you really feel the need to discuss an issue you've read about in LTS, then you should go start your own in Living With or wherever.  There is nothing preventing you form doing so.  And there's also nothing preventing you from sending a PM to a LTS'er and politely asking that they weigh in on your Living With thread after having made one.
« Last Edit: January 10, 2009, 05:30:37 PM by Miss Philicia »
"Iíve slept with enough men to know that Iím not gay"

Offline YaKaMein

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Re: In your opinion, what is a long term survivor?
« Reply #26 on: January 10, 2009, 05:42:33 PM »
Yipee, Sounds like we're on the page then.  :)
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 bear60

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Re: In your opinion, what is a long term survivor?
« Reply #27 on: January 10, 2009, 06:21:45 PM »
Betty said: "I consider a LTS to have been diagnosed for +10 years.  I also like Ms. Philicia's comment about those of us who started treatment pre-HAART, and survived all those nasties.  Of course, we can't exclude LTNP's, who lost loved ones to this disease.  So, +10 years, IMO."
.....
Well, I agree.
I am still feeling a bit at loss for words having just gone through another holiday season while suffering from the loss of someone close to me.  Grieving seems to be a big part of my life right now.  So, I will be brief.
"Survivor":  one who has survived Pre-HAART treatments and or OI's
OR an LTNP who has survived as such for over 10 years.
"Long Term": has to be 10 years or more
Poz Bear Type in Philadelphia

Offline AndyArrow

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Re: In your opinion, what is a long term survivor?
« Reply #28 on: January 10, 2009, 07:14:01 PM »
Again, I'm chiming in here since the OP invited ALL for opinions.

Let's not draw too many lines in the forums sand!
Is it being implied that those with <ten [10] yrs post diagnosis ...  to stay away entirely? 

Simple answer NO.   

I was implying no such thing.  I gave my opinion of what it meant to be an LTSer and said that I hoped people would respect the title.  I wasn't asking anyone not to read or post here but to be cognizant of this forums nature. 

Then I said that's why I don't read or post in the women's forum.  Its just my personal choice.  My feelings are that people post in specific forums for a reason.  IE if they post in the PW thread they probably want responses from PW.  if they post in the MH forum they probably want responses from people who have or had some MH issues.  I could be wrong ... wouldn't be the first time ... it's just my opinion.

AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline denb45

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Re: In your opinion, what is a long term survivor?
« Reply #29 on: January 10, 2009, 10:47:18 PM »
Betty said: "I consider a LTS to have been diagnosed for +10 years.  I also like Ms. Philicia's comment about those of us who started treatment pre-HAART, and survived all those nasties.  Of course, we can't exclude LTNP's, who lost loved ones to this disease.  So, +10 years, IMO."
.....
Well, I agree.
I am still feeling a bit at loss for words having just gone through another holiday season while suffering from the loss of someone close to me.  Grieving seems to be a big part of my life right now.  So, I will be brief.
"Survivor":  one who has survived Pre-HAART treatments and or OI's
OR an LTNP who has survived as such for over 10 years.
"Long Term": has to be 10 years or more

Well I guess I'm over the 10yrs + mark, and I did survive Pre-HAART  AUG 1998 went on disability, and had to give up my career........Damm I miss my 45K a yr. job  :'( , and it's  it's now JAN 2009  ;D
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline edfu

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Re: In your opinion, what is a long term survivor?
« Reply #30 on: January 11, 2009, 04:36:36 AM »
Unless my incipient Alzheimer's, at the age of 66, is acting up again, it is my distinct memory that the LTS forum was specifically set up because there came a time when acrimonious debate in the Living With forum, between those with a long-term diagnosis and those with new diagnoses, was becoming completely out of control and damaging to AIDSmeds in general.  Those newly diagnosed did not want to hear the horror stories from those of us who were diagnosed pre-HAART.  The newly diagnosed objected to LTS stories of multiple OI's and of losing all of our peers to AIDS.  The newly diagnosed, post-HAART, believed HIV positives could lead perfectly "normal" lives, although with a "chronic" yet treatable condition, like diabetes.  The newly diagnosed today were correct, as far as it goes, but it did not reflect the reality of those who came before, those who had been on two or more drug regimens, those who were experiencing newly discovered long-term side effects of being on anti-HIV regimens for years (the cancers, the PNP, etc.).  The newly diagnosed complained vociferously that we LTS's were downers, pessimistic, negative, that we were not being realistic or helpful or supportive. 

I pointed out at the time that this was confirmatory evidence of a "generation gap" in the HIV community.  It has been more than 25 years since the beginning of the AIDS pandemic, and that's more than one generation.  This generation gap is also very evident in the gay community as well, where there is actually a two-generation gap:  If we take Stonewall in 1969 as a turning point, we have those who were "homosexual" pre-1969 and those "gays" who came after, a difference now of 40 years--two generations.  Since we lost almost one whole generation in the 80s and 90s to AIDS, there is extreme difficulty in communication now between those who are still alive and old enough to be grandfathers--like myself--and those who could be our grandchildren. 

I find it extremely difficult to define the parameters of LTS in specific detail other than my feeble attempt at explaining the history of what brought about the initiation of the forum.  It's a generation gap--in many cases, a two-generation gap--and the difference between pre-HAART and HAART.  A 25-year-old diagnosed today may feel no affinity whatsoever with someone diagnosed in, say, 1985.  I personally feel that much has been lost in the inability for generational communication to take place, but it is the reality.  The fact remains that the LTS forum was set up so that "LTS," however it is defined, had a place on AIDSmeds where they could discuss their particular problems and situations without fear and without being accused of being "unrealistic."       

     
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

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Offline aztecan

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Re: In your opinion, what is a long term survivor?
« Reply #31 on: January 11, 2009, 10:10:14 AM »

The fact remains that the LTS forum was set up so that "LTS," however it is defined, had a place on AIDSmeds where they could discuss their particular problems and situations without fear and without being accused of being "unrealistic."       


Which is precisely what I do. I can be my whiny old self here an nobody complains.

They moan and think, "Oy, there he goes again," but they don't complain.  ;)

I would add one caveat to the 10-plus year definition. As others have mentioned, there are those who test positive and find themselves with five T cells and a million viral load, or a host of OIs.

While that would indicate a long-term infection, and certainly is an ordeal, it does not imply knowingly dealing with the bug long term.

Perhaps "late bloomer" would be a good term for those who don't test until they have already developed advanced HIV disease.

Well, it was just an idea.

HUGS,

Mark

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

Offline Moffie65

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Re: In your opinion, what is a long term survivor?
« Reply #32 on: January 11, 2009, 10:22:59 AM »
I wonder, how does the management keep the Womens Forum from being inundated with those who aren't women, and just want to comment?  I think the same way of managing that forum should be included with the welcome stickie in this one.

I need to remind all of you that commenting in this thread doesn't ever mean that the management will take heed to our wishes, or that any changes are going to be made, but I just wanted to know how everyone feels.  I guess I'm certainly not alone in my suspicions that many of you are not participating because of this little wrinkle.  I sure have had enough PMs toward that vein. 
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 BT65

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Re: In your opinion, what is a long term survivor?
« Reply #33 on: January 11, 2009, 11:57:56 AM »
I wonder, how does the management keep the Womens Forum from being inundated with those who aren't women, and just want to comment?  I think the same way of managing that forum should be included with the welcome stickie in this one.

Well, I can tell you how that happens.  If a male comments in one of our (women's) threads, one of the mods (Ann or Jan) reminds them it's a women's forum and tells them not to do it again.

I agree, we should have the same thing here.  Otherwise, why have a LTS forum? (*scratches head*)
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 #34 on: January 11, 2009, 12:27:25 PM »
edfu, many thanks for that well written, concise reply.

Daddy Tim, I think that the problem in the LTS forum is that (I guess) we need all be more self-monitoring and report infractions to the moderating team.  Personally, I'm a bit lax in ever doing this as I'm generally anti-report button.  Are you all stating that you hit the report button and the moderators haven't been doing anything?  If that's the case, and knowing how they function in such instances in the Women's forum, I would say that is a problem that the moderators should be invited to respond to.
"Iíve slept with enough men to know that Iím not gay"

Offline bear60

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Re: In your opinion, what is a long term survivor?
« Reply #35 on: January 11, 2009, 01:59:49 PM »
Mark said:
I would add one caveat to the 10-plus year definition. As others have mentioned, there are those who test positive and find themselves with five T cells and a million viral load, or a host of OIs.

While that would indicate a long-term infection, and certainly is an ordeal, it does not imply knowingly dealing with the bug long term.
..........................................................
Yes.....true. In that case, even tho an infection has been going on a long time, the individual is "newly diagnosed" and has to deal with all of the "newbie" issues such as disclosure and finding the right doctor and getting hooked up with an ASO. etc
I find the topics in LTS more geared to issues such as "what shoes to wear so my feet dont hurt so much", rather than "if I take my meds then go out and party all night is that a bad thing".  Meaning, of course, that LTS people have probably been through all the disclosure and "life altering" periods of adjustment to this virus.  And of course LTS'ers talk more about the loss of friends, companions and family......leading to issues with lonliness and feelings of isolation.
Frankly I would give anything to be able to redo the last 20 years.  This year will be my 20th anniversary of the diagnosis.  I think the reason I continue to post is that I need to feel that I am part of a community and part of a support group here.  But I also believe that what I say has some relevance to new comers, whoever they are, because in 20 years they may face the same issues as me.
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Offline sharkdiver

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Re: In your opinion, what is a long term survivor?
« Reply #36 on: January 11, 2009, 02:03:53 PM »
To be honest,
     I think I would post MORE in the LTS forum if we had the same respect and monitoring as the Women's forum. I'd feel much more comfortable discussing issues, complaints, or whatever without comments or "lectures" from people do not have the same history as us.
     The LTS Forum is why I joined AM. I've lived almost 24 years now with a diagnosis and 1/2 of it was with the expectation that I wasn't going to make it. Certainly, since HAART was made available the fear is quite diminished but there is still "stuff" that rises to the surface time to time and I find that discussing it here in the LTS helps (or should I say... In the past it helped)

    I have no objection for someone who is not a LTS to PM me if they had questions or concerns. But we should be shown some respect by not posting here.

Offline Winiroo

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Re: In your opinion, what is a long term survivor?
« Reply #37 on: January 11, 2009, 07:22:57 PM »
Usually it is easy to tell if a person posting in the women's forum is a male. Unfortunately I don't think it would be as easy to tell if a person posting in the LTS forum is a LTS or not.
They could simply lie if they felt the need to.  They could do the same in the women's forum also if they made a female personality. Its not like we get background checks or are able see the person typing. The only thing we can do is hope the person posting is honest.

10 years ago from now would be 1999. LOL that was not too long ago and in 1999 medically the choices where not too bad. And socially HIV was not as stigmatised as it was 10 years prior to that.
We have come a long way.  ;)

Have a happy new year everyone.  New and old...

Offline denb45

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Re: In your opinion, what is a long term survivor?
« Reply #38 on: January 11, 2009, 07:52:18 PM »
Hey winiroo, haven't seen you in a coons-age, and that's a mighty long time, nice to here form you again  ;D
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Winiroo

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Re: In your opinion, what is a long term survivor?
« Reply #39 on: January 11, 2009, 08:36:45 PM »
thank you

Offline LTSurviver

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Re: In your opinion, what is a long term survivor?
« Reply #40 on: January 11, 2009, 08:42:08 PM »
Diagnosed 22 years ago.

Spent the first five years ready to die.  The next five in limbo.  The last ten in total denial and ignoring my status.  And the last two realizing I may be getting sick finally.  The last 4 months I've been ill and I started meds for the first time in November.

Do I fit in here?

No Stigma?  Poll any non-gay/non-HIV oriented forum online (geek, car, motorcycle, political, etc) and ask people if they would eat at a resturant they knew had an HIV positive employee.  You'll be surprised that the answer is usually 50+% NO.

There is a lot of stigma out there still.  A lot of ignorance.  After 22 years of hiding I'd like to think I could be open about this... but I know better.

Offline Winiroo

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Re: In your opinion, what is a long term survivor?
« Reply #41 on: January 11, 2009, 09:47:55 PM »
No Stigma?  Poll any non-gay/non-HIV oriented forum online (geek, car, motorcycle, political, etc) and ask people if they would eat at a resturant they knew had an HIV positive employee.  You'll be surprised that the answer is usually 50+% NO.

There is a lot of stigma out there still.  A lot of ignorance.  After 22 years of hiding I'd like to think I could be open about this... but I know better.

Your responce indicates to me that you think I wrote there was no stigma now.
It would be ignorant for me to try and claim that. My comment was that today the stigma of being positive is less than in the 90's and in the 90's the stigma was less than it had been in the 80's.
In general of course. There is an abundance of places where ignorance of HIV is more prevalent than in others.

I would not be surprised if a poll of persons non positive, gay or straight showed that 50% or more of diners would pass on eating somewhere where a HIV positive person worked. There is plenty of stigma in every community.

I have not printed up a "I am positive" tshirt. I have joked about it before. I'd wear one because I could give a shit who knows I am positive and the reactions might amuse me.  I could care less what a stranger felt or thought about me.
I hid for the first year of being positive. Stupidly I was ashamed. I say stupidly because I should not be ashamed.
I don't announce to everyone I meet that I have AIDS. But if I where asked or if the situation called for them knowing or if I just felt like saying it,  I'd tell anyone.

Congratulations on your 22 years. Its always nice to hear there are persons who have lived with this illness longer than I have.  I hope you have a happy, healthy and prosperous year.



 ;D

Offline LTSurviver

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Re: In your opinion, what is a long term survivor?
« Reply #42 on: January 12, 2009, 05:12:58 AM »
I guess I am just shocked that after so many years, so much stigma still exists.  I could see maybe 10 or 20%, but over 50%???  Seriously, that's just shocking and depressing to me.

And make no mistake, I have no shame because of my status.  What I do hate is the sudden change in the way people treat you in general.  So only my family, my ex wife and ex girlfriend know.  I was exactly the opposite of you.  In the first year (1987), I let everyone know.  Needless to say I ended up moving away and vowing to never tell anyone unless they absolutely needed to know.

Thank you for the well wishes.  :)  Same to you!

Offline Ann

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Re: In your opinion, what is a long term survivor?
« Reply #43 on: January 12, 2009, 08:00:32 AM »
I wonder, how does the management keep the Womens Forum from being inundated with those who aren't women, and just want to comment?  I think the same way of managing that forum should be included with the welcome stickie in this one.

I need to remind all of you that commenting in this thread doesn't ever mean that the management will take heed to our wishes, or that any changes are going to be made, but I just wanted to know how everyone feels.  I guess I'm certainly not alone in my suspicions that many of you are not participating because of this little wrinkle.  I sure have had enough PMs toward that vein. 

Wendy is correct in what she says about it being much easier to know when someone is a man posting in the Women's forum than it is to know when someone isn't an LTS. For a start, the definition of the term LTS is a somewhat grey area, with differing opinions.

We do move threads that have been started by someone known to be more recently infected/diagnosed. We also try our best to stop non-LTS when they come into a thread to start asking questions or make inappropriate comments.

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.

Maybe I'm just not noticing inappropriate posts. I can't read every single thread and every single post in here. I've only got so many hours in a day and I do have a life outside this forum. Help us to help you and report posts that offend or otherwise bother you.

Another possible solution if for the original poster of any thread to start the first post off with a simple request for replies from LTS only, if that's how the LTS feels about it. If enough of you do this, maybe others will start to get the idea and refrain from posting.

To be honest, I would prefer that only LTS posted in this forum. However, it's exceedingly difficult to moderate.

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

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

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

Offline MarcoPoz

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Re: In your opinion, what is a long term survivor?
« Reply #44 on: January 12, 2009, 09:34:20 AM »
This is just my opinion and as such counts for less than 2 cents on the open market ;-)

I don't mind newbies posting questions to LTS's on this thread.  I see it as a form of mentoring--or ask the old and grizzled ;-)  Sure, no one should pretend to be sopmeone or something they aren't, but I'm cool with folks asking questions of us.

How long do you have to have HIV to be a LTS?  Hmm..I'd say long enough to have attended funerals of HIV poz friends, lose a few hundred T-cells and get some of them back, know what the 4-H's and what GRID was, dealt with a series of side effects and have one's ego worn a bit on the edges from living life with this disease and hopefully gaining a bit of insight.

As for the women's forum--I think it would be cool to be able to pop in and ask questions of them too.  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

Offline sharkdiver

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Re: In your opinion, what is a long term survivor?
« Reply #45 on: January 12, 2009, 10:13:40 AM »
I do mind "newbies" posting in the LTS.
If they want a mentoring situation then they certainly can PM you.

I don't have a problem, kindly and respectfully asking them if they do not post here from now on.

Offline MarcoPoz

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Re: In your opinion, what is a long term survivor?
« Reply #46 on: January 12, 2009, 10:36:48 AM »
I do mind "newbies" posting in the LTS.
If they want a mentoring situation then they certainly can PM you.

I don't have a problem, kindly and respectfully asking them if they do not post here from now on.


Ok--so then what exactly IS a LTS?  If you only want LTS's to post here, it would make sense that you have a firm definition of what an LTS is and isn't.  So what is that definition?

Offline BT65

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Re: In your opinion, what is a long term survivor?
« Reply #47 on: January 12, 2009, 11:35:33 AM »
Ok--so then what exactly IS a LTS?  If you only want LTS's to post here, it would make sense that you have a firm definition of what an LTS is and isn't.  So what is that definition?

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)
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline LTSurviver

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Re: In your opinion, what is a long term survivor?
« Reply #48 on: January 12, 2009, 11:42:31 AM »
I don't know if it's just me, but this thread reminds me of the Rush song 'subdivisions.'

;)

Offline Moffie65

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Re: In your opinion, what is a long term survivor?
« Reply #49 on: January 12, 2009, 11:48:17 AM »
Marco,

I think the responses in this thread somehow come to a consensus that LTS is at a minimum 10 years.  See, that wasn't even what I put out there in the OP, but I will surely fall in line with the group here and gladly accept the groups' opinion.

This from Ann.
Quote
Another possible solution if for the original poster of any thread to start the first post off with a simple request for replies from LTS only, if that's how the LTS feels about it. If enough of you do this, maybe others will start to get the idea and refrain from posting.

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.

LTsurviver:  Subdivisions???  Please explain.  If you look above in this thread, you will find a link to the original thread for which this forum was created.  I recmmend you read it to answer why we needed this place, and still need it.  I am all for subdivisions on the most used and trafficed HIV website on the planet.
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: 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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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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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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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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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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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

Offline MarcoPoz

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Re: In your opinion, what is a long term survivor?
« Reply #100 on: January 14, 2009, 01:43:47 PM »
Thanks all for the teachable moment.  My head hurts ;-)

Here's what I've learned from this thread:

-This forum is chock-full of caring, compassionate and smart people--and a few 'not-so-much'.
-(for me) Try harder to be more clear in posts
-(for me) Don't take the bait just cuz I feel crappy that day.
-Those of us who remember GRID, blue and white handfuls of AZT, the 'cure' in 1996, biohazard signs posted on a room where we were kept and the senseless ending of so many precious lives, have so much to give to one another.

In the whirlwind of what I read here--there were definately pearls of caring and support.

-Marco

Offline Andy Velez

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Re: In your opinion, what is a long term survivor?
« Reply #101 on: January 14, 2009, 01:52:03 PM »
Moffie, when you PM'd me about this issue back in November,  the first thing I asked you was for some specific example(s) of inappropriate comments on the part of any who might not be considered a LT survivor. Personally when addressing any problem I always find it helpful to get specifics rather than batting around at and about generalities. You never responded to my request.

So other than passing along your comments to the other moderators as I promised I would, I decided to let the matter rest there for the timebeing, while keeping watch as often as possible on the ongoing postings.

Defining what a LTS seems inevitably to stir up strong feelings. I appreciate that. And at the same time I continue to believe we can have a vital LTS forum without becoming rigidly exclusionary.  
« Last Edit: January 14, 2009, 01:54:23 PM by Andy Velez »
Andy Velez

Offline Dachshund

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Re: In your opinion, what is a long term survivor?
« Reply #102 on: January 14, 2009, 03:03:50 PM »


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).



I can. I sent a report to mod and a PM to Ann about the thread prior to your response to meech. I felt your response was appropriate and I appreciated the way it was handled.

Personal agendas aside, I think the discussion regarding LTS has been beneficial to all.

Offline Moffie65

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Re: In your opinion, what is a long term survivor?
« Reply #103 on: January 14, 2009, 07:04:46 PM »
My head hurts, my feet stink, and I don't particularly love Jesus.

Now that I have a new asshole, which frankly under the circumstances was probably necessary, due to it being worn out after 62 years; I want to make something perfectly clear.

This thread was never created for revenge!  Period.  Nuf said about that.

This thread was created for curiosity, and to find out what some of the other LTS members of this forum and site felt about a forum that was created for LTS and then asks all to participate.  That was the whole truth and nothing but the truth. 

However, as the thread grew on, and the feelings began to mature, yes, I did become a bit upset at the lack of response from the LTS mods.  Today, while I was in a Consortium meeting, the response came.

What can I learn from this experience?  I learned I am not welcome with my confrontive nature; something I learned from people like Peter Staley and other Act Up cohorts.  I am no longer capable of posting on this site without giving the mods a headache of monstrous proportions.  I am truly sorry for making you of the organization so upset that you had to spend so much of your time squashing everything I said personally.  I am grateful for your personal research and for documenting everything I fucked up, so that now I clearly understand. 

Thank you all for participating in this thread, and if you want to know about the incredible shoes that I have discovered, please e-mail me.  If you don't have my e-mail, sorry.

Good bye.
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 Peter Staley

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Re: In your opinion, what is a long term survivor?
« Reply #104 on: January 14, 2009, 07:33:45 PM »
I am no longer capable of posting on this site without giving the mods a headache of monstrous proportions. 

Not true at all.  I try to read through almost all the posts in these forums (except the Women's Forum and Am I Infected) once every couple of days, so I generally read every post you write.  Almost all of them are intelligent and caring (especially the help you offer newbies!).

But I think you have a chip on your shoulder about me and the other mods, and it reveals itself on thankfully very rare occasions.  This time, I responded.  What did you expect?  Even your goodbye post above seems to acknowledge that you know you attacked the mods.

So no -- I don't get a headache reading your posts here.  I actually slow down and read almost all of them -- they're that good.  But I'm human, and I will respond when unjustly attacked.

Offline crag

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Re: In your opinion, what is a long term survivor?
« Reply #105 on: February 24, 2009, 12:49:41 AM »
I'm new on these forums. But I'll post what I think is a long term survivor; someone who survived AIDS. HIV is  "managed" now. Not so 10 years ago.

But you know, not many of us who actually had AIDS, and I mean who were at the brink, are left. We all had good timing or were suborned bastards and hung on (I had good timing). Only to die of side effects or just give up a few years later.

I knew a guy, a friend, this doctor who lived in Miami Beach. Had been poz forever and had survived AIDS. But after years of drugs and side effects he had had it. He stopped all treatment. And died soon after. Personally, I suspect he was facing something like cancer and didn't want to go through the cycle again. And I don't blame him.

BUT (a big but) this is what I think a long term survivor is. Not who should post in these forums. Personally i dig everyone posting. Just to make this clear, before I get flamed. :)
« Last Edit: February 24, 2009, 01:00:36 AM by crag »

Offline AlanBama

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Re: In your opinion, what is a long term survivor?
« Reply #106 on: February 24, 2009, 03:10:16 PM »
Hi crag, and welcome.

Deep down, I truly believe that a long term survivor is someone who lived through the 80's and early 90's, when we had no drugs at first, and then only AZT....I got on the roller coaster in 1987 and have been riding ever since.  We have tried to put an actual "number" with it -- say 10 years of living with HIV -- but someone who was diagnosed in 1999 is now a 10 year survivor.   Are they a LTS?   It's not for me to say, but I know what I feel in my heart.

I understand what you are saying about your friend who just stopped all treatments and then died.  He probably was just exhausted, and didn't feel like he could take on another "major battle".   I'm not sure I would be willing to.  It would depend on the nature of the illness.   There are quite a few AIDS survivors who have beaten cancer as well, so that would be a bridge I would cross when and if I ever come to it.

hugs,
Alan
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Offline crag

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Re: In your opinion, what is a long term survivor?
« Reply #107 on: February 25, 2009, 02:23:29 AM »
You know during my time of being on the brink, the thought of killing myself floated around. I would've been easy considering all the drugs I had (and still have) around the house. Or could've just stopped the drugs and died on the toliet. ;)

But I hung on. I was so brave back then. Actually I was scared shitless. I often tell people it was fear that kept me alive. Maybe I was brave too, just a little.  It wasn't that I was concerned about any judgments, iI was just pissed that no one would know of my passing. Most of my "dear dear" [ex] friends  were circuit bunnies. Who forgot my name when i got ugly and railroad thin.

Living gave me the opportunity to change things. To stop my mindless pursuit of ridiculous  wealth  and spread what I had around. And surround myself with people who give a shit about each other, and the greater world.

-Stephen

PS: And Peter, we knew/met each other. Though it's been years. Glad to see you still kicking.
« Last Edit: February 25, 2009, 03:17:40 AM by crag »

Offline Peter Staley

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Re: In your opinion, what is a long term survivor?
« Reply #108 on: February 25, 2009, 10:25:01 AM »
PS: And Peter, we knew/met each other. Though it's been years. Glad to see you still kicking.

Glad to meet you again!  My memory needs some jogging though -- send me a Private Message (click the IM bubble below my picture) with more details.

Offline Miss Philicia

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Re: In your opinion, what is a long term survivor?
« Reply #109 on: November 20, 2009, 01:06:18 PM »
When the forum was first up and running I thought and believed it was for all those all had survived the horrors of the 80's and early 90's..to me that is a LTS..
ditto
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Offline BT65

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Re: In your opinion, what is a long term survivor?
« Reply #110 on: November 21, 2009, 07:31:15 AM »
I totally agree that a LTS'er is someone who's survived the 80's, early 90's being diagnosed.  I, myself, don't think that someone who's in their 50's, who's been diagnosed within the last 5-10 or so years is one.  Of course, this is my opinion.  I just don't think that someone who never had to live with the early-day horrors that so many of us have, is necessarily "qualified" to understand what we personally went through/continue to go through as results of nasty OI's that left us wondering if we were going to live another couple days, and the early horrific meds we had to take.  I realize some newer diagnosed people lost a lot of friends.  But, we who actually were diagnosed with HIV/Aids, sat there, (at least I did), besides the friends I lost, wondering if someone was going to sit with me when the time came (which I believed was inevitable). 

If anyone was allowed to participate, then why have a LTS'ers forum.  In our women's forum, men aren't allowed to post.  I think we LTS'ers deserve the same respect.
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Offline Dachshund

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Re: In your opinion, what is a long term survivor?
« Reply #111 on: November 21, 2009, 08:22:52 AM »
My definition of a LTS has and always will be someone who tested and was diagnosed prior to the advent of HAART. The emotional and physical equivalent just does not exist after that. Maybe similar, but not the same. Others can empathize, but only a LTS can understand. I wish some would try a little random act of kindness instead of stirring the pot when it comes to posting in LTS.

Offline Miss Philicia

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Re: In your opinion, what is a long term survivor?
« Reply #112 on: November 21, 2009, 09:23:52 AM »
I wish some would try a little random act of kindness instead of stirring the pot when it comes to posting in LTS.

I've never understood why there's once restriction for Positive Women and yet another wholly different one for Long Term Survivor.  It's my hope that one of our fair moderators could explain this to the rest of us.
"Iíve slept with enough men to know that Iím not gay"

Offline Moffie65

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Re: In your opinion, what is a long term survivor?
« Reply #113 on: November 21, 2009, 11:04:27 AM »
Ms. Philicia,  I suggest you ask Mr Velez, as he has been stalwartly against closing the LTS forum to anyone, even though he is still not HIV+ and couldn't, even on his best day, understand the LTS experience, except as an onlooker.

Quote
Defining what a LTS seems inevitably to stir up strong feelings. I appreciate that. And at the same time I continue to believe we can have a vital LTS forum without becoming rigidly exclusionary.
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and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
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Offline Snowangel

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Re: In your opinion, what is a long term survivor?
« Reply #114 on: November 21, 2009, 07:42:36 PM »
Andy Velez is not positive?  I always thought he was, to me his posts have always been very informative and supportive.

To tell you the truth, I can never remember if I am supposed to post her or not? I got infected in 94, tested and started meds in 97, aids diagnosis in 00(or so) but for the most part was going it alone till I found you guys a couple of years ago.

  As far as having a seperate womens forum, I thought it was because we tend to have a different set of problems, body wise, that men don't have to go through and usually cringe to hear about, not to mention, usually but not always ,and not all of us, are more sensitive to certain things.
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Offline anniebc

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Re: In your opinion, what is a long term survivor?
« Reply #115 on: November 21, 2009, 08:55:20 PM »
I wish we could put an end to this, I really do...for what it's worth this is what a LTS is to me:

Those who remember HIV being referd to the "GRID"
(gay-related immune deficiency), stigmatizing the gay community as carriers of this deadly disease.

The  Canadian flight attendant, nicknamed "patient zero" ...and After 6 years of watching people die, those who remember the "new treatment" Retrovir (AZT, Zidovudine).

hugs
Jan :-*
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Offline aztecan

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Re: In your opinion, what is a long term survivor?
« Reply #116 on: November 22, 2009, 12:15:54 PM »
I wish we could put an end to this, I really do...for what it's worth this is what a LTS is to me:

Those who remember HIV being referd to the "GRID"
(gay-related immune deficiency), stigmatizing the gay community as carriers of this deadly disease.

The  Canadian flight attendant, nicknamed "patient zero" ...and After 6 years of watching people die, those who remember the "new treatment" Retrovir (AZT, Zidovudine).

hugs
Jan :-*

Sounds good to me.

By the way, the name of the flight attendant was Andre' Dugat, although I probably mispelled his name.

From what I heard, he was quite a looker.

HUGS,

Mark
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Offline Dennis

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Re: In your opinion, what is a long term survivor?
« Reply #117 on: November 22, 2009, 01:34:34 PM »
I wonder if those with other manageable, degenerative diseases, such as breast cancer, quibble about such things.

For what it's worth, I was diagnosed almost 20 years ago. I remember being prescribed AZT and being told if i didn't take it I would be dead in 10 years. I refused to take it. In fact, I didn't start treatment until December of 2002, 14 years after being diagnosed.

I've never been to a funeral of someone who has died of AIDS. Hell...I don't even know of anyone personally who has died of AIDS.

And despite all this, or conflicting definitions from other members, I still consider myself a LTS and will do so until the day I die.

Offline Dachshund

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Re: In your opinion, what is a long term survivor?
« Reply #118 on: November 22, 2009, 01:49:53 PM »
I wonder if those with other manageable, degenerative diseases, such as breast cancer, quibble about such things.

For what it's worth, I was diagnosed almost 20 years ago. I remember being prescribed AZT and being told if i didn't take it I would be dead in 10 years. I refused to take it. In fact, I didn't start treatment until December of 2002, 14 years after being diagnosed.

I've never been to a funeral of someone who has died of AIDS. Hell...I don't even know of anyone personally who has died of AIDS.

And despite all this, or conflicting definitions from other members, I still consider myself a LTS and will do so until the day I die.

And yet you decide to quibble about it with your own conflicting definition.

Offline Joe K

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Re: In your opinion, what is a long term survivor?
« Reply #119 on: November 22, 2009, 02:44:26 PM »
I wonder if those with other manageable, degenerative diseases, such as breast cancer, quibble about such things.
Dennis,

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.
« Last Edit: November 22, 2009, 02:47:10 PM by killfoile »

Offline leatherman

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Re: In your opinion, what is a long term survivor?
« Reply #120 on: November 22, 2009, 02:52:11 PM »
I wonder if those with other manageable, degenerative diseases, such as breast cancer, quibble about such things.
I would disagree with your definition of calling this a manageable disease. Perhaps it is NOW for someone diagnosed 2000 and later; but many diagnosed before that time are still going to great lengths to fight back death. How about we call if a "barely manageable disease" to at least give a little reality to the great lengths many go to to stay alive a little bit longer.

I just don't understand why people can't see that the people infected that went onto treatment at the start of this epidemic are having a different life dealing with this disease and the treatments than the people that were infected or went onto meds literally decades later. We're discussing two radically different groups of people with different treatment/therapy regimens.

Quote
For what it's worth, I was diagnosed almost 20 years ago. I remember being prescribed AZT and being told if i didn't take it I would be dead in 10 years. I refused to take it. In fact, I didn't start treatment until December of 2002, 14 years after being diagnosed.
It really pisses me off to see how adamant some are to belittle the terrible times and horrible trials that have afflicted those who were infected and affected at the first of this epidemic. And how some people still belittle the problems the LTSs are still dealing with today by trivializing them, or poo-pooing them off to talk about the unaffected people. (as in the thread about ageing and HIV) It's hard enough making doctors understand and pay attention to these problems sometimes without other HIV+ people dissing people for talking about these issues.

Quote
I've never been to a funeral of someone who has died of AIDS. Hell...I don't even know of anyone personally who has died of AIDS.
in the politest of ways let me simply say, you lucky bastard.
Too bad we don't all have it as easy. Too bad all those other people died from it.

I nearly died from AIDS and pneumonia in a hospital twice. I've taken handfuls of the worse medicines imaginable that made me puke so much I thought death would be easier. I sat by the bedsides of two long-term partners (foregoing my own meds, food and sleep) till they passed away and I had to bury them and somehow find the strength to go on. Obviously you and I don't have the same disease at all and I really take offense at your bragging.
leatherman (aka mIkIE)


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Offline Dennis

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Re: In your opinion, what is a long term survivor?
« Reply #121 on: November 22, 2009, 03:16:38 PM »
No, I'm not being insensitive. Just as my Aunt who has been living with breast cancer for 23 years  is no less insensitive to her sister who has only been living with breast cancer for only 3 years.

Fighting over the definition of what a LTS is neither going to change my or your past. Nor is it going to help us progress forward. We each have our own path in life. And for anyone esle to diminish the plight of someone elses path just because you do not see as difficult as your own is insensitive.

It's quite obvious from the different remarks in this thread (which has been going on for how long?) that we each have our own conclusion as to what a LTS is. Where has it gotten us?

However, I'm honored that you consider me a LTS, despite me not being diagnosed pre AZT or losing countless friends. These appear to be two main criteria that need to be met in order to qualify as a LTS by the majority of definitions in this thread.

Below are loose definitions of what I found for a LTS. Notice, there's no mention of what drugs were available when or how many friends one has to watch pass away.

Here's a definition of LTS by ghmc.org...

     Long-Term Survivor: a looser term than LONG-TERM NONPROGRESSOR that indicates any person with any stage of HIV infection, including AIDS, who has been stable over a period of years.

Here are 8 characteristics of a LTS based on a 1987 research study  http://www.thebody.com/content/art52598.html

1. They are realistic and accept their diagnosis and do not take it as a death sentence.
2. They have a fighting spirit and refuse to be helpless/hopeless.
3. They have changed lifestyles.
4. They are assertive and have the ability to get out of stressful and unproductive situations.
5. They are tuned into their own psychological and physical needs -- and they take care of them.
6. They are able to talk openly about their illness.
7. They have a sense of personal responsibility for their health, and look at the treating health care provider as a collaborator.
8. They are altruistically involved with other persons with HIV.

In my opinion, ANYONE who lives with any type of terminal illness is a LTS!

Offline Dennis

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Re: In your opinion, what is a long term survivor?
« Reply #122 on: November 22, 2009, 03:30:47 PM »
I'm sorry you see this as bragging. Again, my experience is diminished because my experiences haven't been as horrific as others. This makes me no less a LTS, though. And yes, I consider this a manageble disease even though I was diagnosed in 1990 (10 years fprior to your 2000 year timeframe)

And by the way, I spent 3 weeks over X-Mas and New Years with PCP. I had 2 t-cells. I spent almost 2 months on oxygen therapy.

Bottom line is, I did what I needed to do to recoup and I don't dwell on it. I move forward the best I can with what I've got. Although I haven't forgotten the past, I don't dwell on it. I also don't let the past define who I am today.


I would disagree with your definition of calling this a manageable disease. Perhaps it is NOW for someone diagnosed 2000 and later; but many diagnosed before that time are still going to great lengths to fight back death. How about we call if a "barely manageable disease" to at least give a little reality to the great lengths many go to to stay alive a little bit longer.

I just don't understand why people can't see that the people infected that went onto treatment at the start of this epidemic are having a different life dealing with this disease and the treatments than the people that were infected or went onto meds literally decades later. We're discussing two radically different groups of people with different treatment/therapy regimens.
It really pisses me off to see how adamant some are to belittle the terrible times and horrible trials that have afflicted those who were infected and affected at the first of this epidemic. And how some people still belittle the problems the LTSs are still dealing with today by trivializing them, or poo-pooing them off to talk about the unaffected people. (as in the thread about ageing and HIV) It's hard enough making doctors understand and pay attention to these problems sometimes without other HIV+ people dissing people for talking about these issues.
in the politest of ways let me simply say, you lucky bastard.
Too bad we don't all have it as easy. Too bad all those other people died from it.

I nearly died from AIDS and pneumonia in a hospital twice. I've taken handfuls of the worse medicines imaginable that made me puke so much I thought death would be easier. I sat by the bedsides of two long-term partners (foregoing my own meds, food and sleep) till they passed away and I had to bury them and somehow find the strength to go on. Obviously you and I don't have the same disease at all and I really take offense at your bragging.
« Last Edit: November 22, 2009, 03:32:35 PM by Dennis »

Offline Dachshund

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Re: In your opinion, what is a long term survivor?
« Reply #123 on: November 22, 2009, 03:38:48 PM »
No, not everyone is a LTS and that "research" you use in my opinion is nonsense. Trite, to say the least. Someone living with AIDS since 2002 is not a LTS. Others may consider you a LTS, but I don't. I could be wrong, guess I'll have to wait for that book of yours to come out.

Offline Dennis

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Re: In your opinion, what is a long term survivor?
« Reply #124 on: November 22, 2009, 03:41:44 PM »
No, not everyone is a LTS and that "research" you use in my opinion is nonsense. Trite, to say the least. Someone living with AIDS since 2002 is not a LTS. Others may consider you a LTS, but I don't. I could be wrong, guess I'll have to wait for that book of yours to come out.

I wasn't diagnosed in 2002. I believe I stated I was diagnosed in 1990 and hospitalized with PCP in 2002.

What does my book have to do with this discussion? The only thing "trite" is your incessant need for personal attacks within these forums when someone disagrees with you. Anymore personal jabs you'd care to take?
« Last Edit: November 22, 2009, 03:51:09 PM by Dennis »

Offline Dennis

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Re: In your opinion, what is a long term survivor?
« Reply #125 on: November 22, 2009, 03:54:58 PM »
One last comment and I'm outa this thread.

Many of you forget the key word in Long Term SURVIVOR.

As a LTS, one should speak from the perspective of a survivor and not a victim.

Offline leatherman

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Re: In your opinion, what is a long term survivor?
« Reply #126 on: November 22, 2009, 04:09:58 PM »
I'm sorry you see this as bragging. ...
Although I haven't forgotten the past, I don't dwell on it.
you still totally miss the point, which on one hand is a good thing, as I would never wish my experiences on anyone; but it does prove that you're not an LTS. Being a "survivor" means you have to actual "survive" going through something tramatic, otherwise it's just living normal life. Quite frankly, finding others here with similar experiences is what I came looking for and how I found some comfort and support from people here.

I can never forget the past. Forget all my dead friends who funerals I attended (I'm sure they'll forgive me for saying such a flip thing to make this point); but the fact that AIDS killed and put both Randy and Jim into the ground is a part of my past I'll never be able to forget or just not "dwell on". Lord I suffer enough survivor's guilt just wondering why/how I survived while all those other people died, much less outliving not one but two partners. (Christ almighty, Jim hasn't even been dead two years yet.)

When I recently moved, once again I had to not only go through boxes of stored memorabilia from both men, but I had to decide did I want to keep Jim's couch? How about this lamp that Randy bought all those years ago? What about these dishes that Randy bought? What about these sewing supplies from Jim's old house? After living 20 years with my two guys, nothing I own is MINE it's all OURS. How am I ever supposed to forget in a situation like this? My grandmother doesn't have to forget and put into the past the life she had for 50 yrs with my Grandfather, and I shouldn't have to put my past into the closet to appease YOUR idea of what an LTS is.

Just living everyday, not only for myself but for Randy and Jim, means I can never NOT think about the past. Every day that they, and all our old friends, are dead from AIDS, is a day I have to remember the past and dwell on what AIDS has done to my life. Every day that I wonder if my health issues are just age-related or from the past meds is a day I can't forget. Every day that I've lived since getting out of the hospital has been a day that AIDS didn't kill me, and I sure can't forget that. I've very thankful for that; and it would be a stupid way to live to not dwell on and appreciate how far I've come and how much I've lived through.

As I said, you obviously haven't lived with the disease that I have, so no I don't think that you're a LTS either. You have only lived with AIDS since 2002 - that's not even close to a decade, dude, how can you claim that's a long time? Come back and chat with me in another decade.

One last comment and I'm outa this thread.
Many of you forget the key word in Long Term SURVIVOR.
As a LTS, one should speak from the perspective of a survivor and not a victim.
As I look up at the pictures of Randy and Jim on the wall beside my computer desk, I feel just fine telling you that I don't think you're a lucky bastard; with the insensitivity you're shown in your comments, I just think you're a bastard.
leatherman (aka mIkIE)


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Offline Joe K

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Re: In your opinion, what is a long term survivor?
« Reply #127 on: November 22, 2009, 04:19:24 PM »
Sorry for the slight hijack. This thread has convinced me the introduction thread should be revised and I have started a new post on the subject.

Now, back to your regularly scheduled thread.

edited to add:
Dennis,

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.
« Last Edit: November 22, 2009, 04:23:57 PM by killfoile »

Offline Dachshund

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Re: In your opinion, what is a long term survivor?
« Reply #128 on: November 22, 2009, 04:23:46 PM »
I wasn't diagnosed in 2002. I believe I stated I was diagnosed in 1990 and hospitalized with PCP in 2002.

What does my book have to do with this discussion? The only thing "trite" is your incessant need for personal attacks within these forums when someone disagrees with you. Anymore personal jabs you'd care to take?

Nothing personal puddin', maybe you'll sign a copy for me when we're in Vegas.

Offline Dennis

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Re: In your opinion, what is a long term survivor?
« Reply #129 on: November 22, 2009, 04:24:24 PM »
Please consider reading my posts before replying to them.

On two seperate occassion I mentioned I was diagnosed with HIV in 1990.
I'm not quite sure why two of you continue to change my diagnosis date.

I never asked anyone to forget their past. However, I still stand by my opinion that a LTS should speak from the perspective of a survivor and not a victim.

As far as living through something tramatic, I guess having an AIDS diagnosis for at least 7 out of the past 20 years isn't tramatic enough. Here's a silly question. If I were to lose a friend tomorrow (knock on wood), would you consider me a LTS then? What if I were hospitalized with PCP for the second time next week? Would that make me a LTS. Or did all this have to happen prior to 1990?

I am a LTS because I have lived with HIV/AIDS for the past 20 years, and experienced what I experienced due to choices of my own, choices of others, and some plain ol' good luck. Again, I apologige that my experiences were not as horrific as yours.

Offline Dachshund

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Re: In your opinion, what is a long term survivor?
« Reply #130 on: November 22, 2009, 04:27:56 PM »
Please consider reading my posts before replying to them.

On two seperate occassion I mentioned I was diagnosed with HIV in 1990.
I'm not quite sure why two of you continue to change my diagnosis date.

I never asked anyone to forget their past. However, I still stand by my opinion that a LTS should speak from the perspective of a survivor and not a victim.

As far as living through something tramatic, I guess having an AIDS diagnosis for at least 7 out of the past 20 years isn't tramatic enough. Here's a silly question. If I were to lose a friend tomorrow (knock on wood), would you consider me a LTS then? What if I were hospitalized with PCP for the second time next week? Would that make me a LTS. Or did all this have to happen prior to 1990?

I am a LTS because I have lived with HIV/AIDS for the past 20 years, and experienced what I experienced due to choices of my own, choices of others, and some plain ol' good luck. Again, I apologige that my experiences were not as horrific as yours.

Here's a silly answer, no, no, and yes.

Offline leatherman

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Re: In your opinion, what is a long term survivor?
« Reply #131 on: November 22, 2009, 04:37:18 PM »
On two seperate occassion I mentioned I was diagnosed with HIV in 1990.
I'm not quite sure why two of you continue to change my diagnosis date.
because being "HIV+" and "having AIDS" are two very different things. Doh! You'd think having PCP would have shown you the difference. It sure showed me - then spending another 5 yrs or so recovering from that just proved how different being "positive" is from "having aids".

Again, I apologige that my experiences were not as horrific as yours.
thanks.  :) That's so much nicer than when you aren't bragging about how many years you went before having AIDS, how many years you didn't take meds and how many of your friends and lovers aren't dead.
leatherman (aka mIkIE)


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

Offline Dennis

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Re: In your opinion, what is a long term survivor?
« Reply #132 on: November 22, 2009, 04:39:57 PM »
Exactly...you WERE (past tense) a victim. You're not anymore. You are a survivor, as in Long Term Survivor. It's one thing to make mention of your horrific experiences. It's another to discuss how you overcame them. What made you stronger? This is how you help your fellow LTS's who experienced similar events. And this is how you help the newly diagnosed, or those like myself, understand and respect your struggles in a way that doesn't turn them off. Ultimately, your story is about what made you stronger in the face of death, not the disease that once knocked you down.

Unfortunately, when discussing "what a long term survivor" is, it does become a pissing match between who had it worse. And quite frankly, I'm disgusted that anyone would diminish the 20 years I have lived with this virus and tell me I'm not a LTS simply because I didn't have the same traumatic experiences they did.

edited to add:
Dennis,

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.

Offline Dennis

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Re: In your opinion, what is a long term survivor?
« Reply #133 on: November 22, 2009, 04:50:57 PM »
Nothing personal puddin', maybe you'll sign a copy for me when we're in Vegas.

I look forward to it! I only hope you remain as catty and bitchy in person as you are behind the comfort of your keyboard.

Offline Dachshund

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Re: In your opinion, what is a long term survivor?
« Reply #134 on: November 22, 2009, 05:03:38 PM »
I look forward to it! I only hope you remain as catty and bitchy in person as you are behind the comfort of your keyboard.

Don't you worry about that Miss Thing, I'm cattier and bitchier in person. We'll have a lot in common, if they don't cancel my room. ;)

Offline Dennis

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Re: In your opinion, what is a long term survivor?
« Reply #135 on: November 22, 2009, 05:16:03 PM »
Don't you worry about that Miss Thing, I'm cattier and bitchier in person. We'll have a lot in common, if they don't cancel my room. ;)

Why on earth would anyone cancel your reservation? I'm looking forward to personally escorting you to the top of the Stratosphere  :-*

Offline leatherman

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Re: In your opinion, what is a long term survivor?
« Reply #136 on: November 22, 2009, 05:19:07 PM »
And quite frankly, I'm disgusted that anyone would diminish the 20 years I have lived with this virus and tell me I'm not a LTS simply because I didn't have the same traumatic experiences they did.
damn dude make up your mind.  ;D a while ago you apologized for not having any traumatic experiences, and now you're diminishing my actual real experiences by claiming that your NON-experiences are as traumatizing as the stuff I actually experienced.  ::) If you want, you more than welcome to my traumatic experiences and the aftermath. (Though personally, I don't think you could handle it) Have a nice time visiting the graves, puking from the pills, having all these health problems and living in poverty.

This is how you help your fellow LTS's who experienced similar events.
They don't need my help if they've made it this far. They just need a friendly shoulder to cry on once in a while before tackling it all again another day - without having to justify why they feel the way they do.

And this is how you help the newly diagnosed, or those like myself, understand and respect your struggles in a way that doesn't turn them off.
then listen to what we've been telling you. Your non-experiences aren't like ours were. Your meds aren't like our meds were. And don't make me name the names of the dead again since your friends are still alive.

If that turns you off, that's your problem. No where in the welcome to this thread does it say that I have to help or teach people how I managed to get through all the crap and get to this point today, it just says "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".

It also says: "This forum is a safe place where those who have been living with HIV for anywhere from several years to decades can come to discuss the issues they confront. Among other things this is where they can talk about their experiences as well as the special challenges they have to deal with physically, emotionally and otherwise that come with having lived with HIV for a lengthy period of time."

Every time you denigrate my experiences by claiming your non-experiences are somehow like mine, then it's you who's taking away the safe place and shouldn't be in this forum. So go post in the Living With section since you implied that you haven't faced any "special challenges".


mikie

oh, and I probably won't ever meet any of you in person. AIDS destroyed my livelyhood, took my health, forced me onto disability over a decade ago, and took two partners (and their incomes), now I'm so freaking poor I had to move back in with family to keep a roof over my head and food on the table. Now that's how traumatic AIDS can be when it lets you live. ;) As I said in one of the AMG thread, unless y'all hold it near me, I'll never be able to attend.
leatherman (aka mIkIE)


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

Offline Miss Philicia

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Re: In your opinion, what is a long term survivor?
« Reply #137 on: November 22, 2009, 05:23:10 PM »

I've never been to a funeral of someone who has died of AIDS. Hell...I don't even know of anyone personally who has died of AIDS.

That was a large rock you hid under.
"Iíve slept with enough men to know that Iím not gay"

Offline Dachshund

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Re: In your opinion, what is a long term survivor?
« Reply #138 on: November 22, 2009, 05:27:24 PM »
Why on earth would anyone cancel your reservation? I'm looking forward to personally escorting you to the top of the Stratosphere  :-*

Oh I don't know puddin', shit happens. You're a personal escort and a wordsmith? How do you find the time?

Offline Miss Philicia

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Re: In your opinion, what is a long term survivor?
« Reply #139 on: November 22, 2009, 05:28:38 PM »

And by the way, I spent 3 weeks over X-Mas and New Years with PCP. I had 2 t-cells. I spent almost 2 months on oxygen therapy.

So, uh -- you almost died - that sounds pretty horrific even though earlier you stated you'd had no horrific experiences.  Do you regret not commencing treatment before that time?  Most would.  Or maybe you had a death sentence.

Just curious -- how often were you see an HIV specialist during those years of denial from 1990 - 2002?
« Last Edit: November 22, 2009, 05:40:06 PM by Miss Philicia »
"Iíve slept with enough men to know that Iím not gay"

Offline Moffie65

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Re: In your opinion, what is a long term survivor?
« Reply #140 on: November 22, 2009, 05:38:14 PM »
Thanks Dennis for showing us your colors in this thread.  Unfortunately, hateful, mean and bitter are not a part of my colorful rainbow, so I cannot really appreaciate the colors you've chosen for this thread; they clash with the meaning and tenor of the OP. 

Thanks everyone for your participation and especially Jan's concise definition of a LTS.  You rock!
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 Dennis

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Re: In your opinion, what is a long term survivor?
« Reply #141 on: November 22, 2009, 05:41:44 PM »
So, uh -- you almost died - that sounds pretty horrific even though earlier you stated you'd had no horrific experiences.  Do you regret not commencing treatment before that time?  Most would.  Or maybe you had a death .

Honestly, I spent most of that time in the hospitall re-thinking my prior actions. "What if I had started meds?" What if I didn't do all that ecstasy?" "What if this/that?" But today, I'm glad I didn't start treatment. AZT was the only thing prescribed to me at that time. The horror stories I've heard from other members just reiterated the little research I did at that time. I'm thankful to still be on my first rcocktail since 2002.

Offline Dennis

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Re: In your opinion, what is a long term survivor?
« Reply #142 on: November 22, 2009, 05:47:34 PM »
Thanks Dennis for showing us your colors in this thread.  Unfortunately, hateful, mean and bitter are not a part of my colorful rainbow, so I cannot really appreaciate the colors you've chosen for this thread; they clash with the meaning and tenor of the OP. 

Thanks everyone for your participation and especially Jan's concise definition of a LTS.  You rock!

I'm hateful, mean, and bitter? Because my experiences as a LTS are not the same as yours or most LTS in this thread?

I believe the OP stated all were welcome to post and you respected all opinions. I guess you meant to say was all opinions that correlate with your own.

Offline Dennis

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Re: In your opinion, what is a long term survivor?
« Reply #143 on: November 22, 2009, 05:48:44 PM »
Oh I don't know puddin', shit happens. You're a personal escort and a wordsmith? How do you find the time?

Easy...I don't fill my time with 4,782+ posts on aidsmeds

Offline Miss Philicia

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Re: In your opinion, what is a long term survivor?
« Reply #144 on: November 22, 2009, 05:52:25 PM »
Honestly, I spent most of that time in the hospitall re-thinking my prior actions. "What if I had started meds?" What if I didn't do all that ecstasy?" "What if this/that?" But today, I'm glad I didn't start treatment. AZT was the only thing prescribed to me at that time. The horror stories I've heard from other members just reiterated the little research I did at that time. I'm thankful to still be on my first rcocktail since 2002.

Yes, well as someone diagnosed in 1990 you should well know that the early does in 1987 of 1,200 mg were reduced to the now standard 300 mg in 1991, the same as what I was put on a year later.

Most people died at those large doses not because of evil AZT (though partly) but because by 1987 those patients had been infected for a decade or more (as Peter Staley wisely and repeatedly has pointed on on this forum if you read more threads).
"Iíve slept with enough men to know that Iím not gay"

Offline Miss Philicia

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Re: In your opinion, what is a long term survivor?
« Reply #145 on: November 22, 2009, 05:53:41 PM »
Easy...I don't fill my time with 4,782+ posts on aidsmeds

No, but 95% of them are in Forums Gathering when, in fact, you'd probably be better served educating yourself about treatment so that you don't sink to 2 t-cells.
"Iíve slept with enough men to know that Iím not gay"

Offline Miss Philicia

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Re: In your opinion, what is a long term survivor?
« Reply #146 on: November 22, 2009, 05:55:39 PM »
I'm hateful, mean, and bitter?

Well, you did call someone here catty and bitchy.  LIke that's the pot calling the kettle black.
"Iíve slept with enough men to know that Iím not gay"

Offline Dachshund

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Re: In your opinion, what is a long term survivor?
« Reply #147 on: November 22, 2009, 05:56:20 PM »
Easy...I don't fill my time with 4,782+ posts on aidsmeds

I'm not a fan of fiction, but do you have a working title? How 'bout Going Rouge? Now skidaddle Shakespeare and finish your tome.

Offline Jeff G

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Re: In your opinion, what is a long term survivor?
« Reply #148 on: November 22, 2009, 05:57:03 PM »
 I have family that sometime ask me why I have dealt with depression or had to go into pain management . When I complained about being in pain one day my mom asked whats wrong with you ? People ask me this even though they know I have had to take buckets full of AZT and other crap for 26 yrs . They ask me this knowing I have had 3 times the recommended dose of 2 different chemo drugs . I have lost most every thing I hold dear more than a couple of times . I'm sure folks on here have had it worse than me so I'm not complaining ... at least not today .

I think a true long-Term Survivors  would not need to ask me the questions I wrote about here , they just know when you need a shoulder and probably what for .


Offline Dennis

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Re: In your opinion, what is a long term survivor?
« Reply #149 on: November 22, 2009, 06:18:16 PM »
Yes, well as someone diagnosed in 1990 you should well know that the early does in 1987 of 1,200 mg were reduced to the now standard 300 mg in 1991, the same as what I was put on a year later.

Most people died at those large doses not because of evil AZT (though partly) but because by 1987 those patients had been infected for a decade or more (as Peter Staley wisely and repeatedly has pointed on on this forum if you read more threads).

You're absolutely correct. I should read more posts on aidsmeds.com to reassure myself the choice not to go AZT in 1990 was the right choice for me at that time.  ::)

Offline Dennis

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Re: In your opinion, what is a long term survivor?
« Reply #150 on: November 22, 2009, 06:19:41 PM »
No, but 95% of them are in Forums Gathering when, in fact, you'd probably be better served educating yourself about treatment so that you don't sink to 2 t-cells.

Thank you for your concern. I'll ask my doctor when I see him in two months if he concurs.

Offline sharkdiver

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Re: In your opinion, what is a long term survivor?
« Reply #151 on: November 22, 2009, 06:20:34 PM »

I think a true long-Term Survivors  would not need to ask me the questions I wrote about here , they just know when you need a shoulder and probably what for .


beautifully stated, thank you

Offline anniebc

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Re: In your opinion, what is a long term survivor?
« Reply #152 on: November 22, 2009, 06:44:01 PM »
Dennis, Dach and Miss P I think the best thing to do here is to is to put each other on ignore or just don't respond to each other any more in this thread, the back and forth arguments and personal attacks are going nowhere..and lets face it you guys are never going to agree on this.

To be honest I don't think anyone is going to agree 100% on what they believe an LTS is...if the rest of you  want to continue to debate and discuss that's fine but please try not to get personal or start with the name calling...this applies to everyone who decides to post in this thread...I know how frustrating some of you get but please try and keep it in check.

Keep it civil guys.

Hugs
Jan
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline actupts

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Re: In your opinion, what is a long term survivor?
« Reply #153 on: November 22, 2009, 08:02:18 PM »
I would respectfully suggest that Long Term Survivors be defined as anyone diagnosed with HIV or AIDS prior to 1996 when first generation protease inhibitors became available.  Those of us diagnosed before the advent of effective treatments will always view HIV very differently than someone diagnosed today, put on a once daily regimen, and told to return in six months for follow-up.

People diagnosed with any stage of HIV disease today will never be treated as the "walking dead" the way we were. After my AIDS diagnosis in 1993, no one, and I mean no one, believed that I was going to live to be 25. (I was 21 at the time.)  

Nor will people diagnosed after 1996 have to endure watching their friends, neighbors, fellow AIDS activists, and support group, if any, waste away, develop cancers and OIs that most doctors have never heard of, and die.  

Nor will someone diagnosed today likely turn into a walking skeleton like I slowly did, and have to go for chemotherapy surrounded by other walking skeletons being given infusions to treat their going blind from CMV or mad from systemic Kaposi's sarcoma lesions.

Nor will they have to take some of the truly awful antivirals that first came out, such as AZT monotherapy, liquid Norvir, original formula ddI, or ddC.  I remember taking AZT and, several meds later,  took Crixivan, delavirdine, and acyclovir three times a day on an empty stomach and 3TC twice daily with or without food. My Crixivan/delavirdine/3TC regimen was later augmented with Viread, which had to be taken WITH food.  The whole time, I was also on numerous other medications (e.g., calcium supplements) which could not be taken with any of those, resulting on my entire day revolving around my meds.  I managed to do take t.i.d Crixivan from 1996-2006.

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.

« Last Edit: November 22, 2009, 10:53:20 PM by actupts »

Offline edfu

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Re: In your opinion, what is a long term survivor?
« Reply #154 on: November 22, 2009, 09:14:43 PM »
By the way, the name of the flight attendant was Andre' Dugat, although I probably mispelled his name.

Just for the record, his name was Gaetan Dugas.

And " Patient Zero" was not a nickname.  It was how Dugas was so designated in the Los Angeles Cluster Study conducted by Dr. Bill Darrow, of the Centers for Disease Control.  It is correct epidemiological usage.  Darrow had established sexual links--via complicated diagrams of circles and arrows--between 40 patients in 9 cities.  At the center of the cluster diagram was Dugas.  At least 40 of the first 248 gay men diagnosed with GRID (as it was then called) in the U.S., as of April 12, 1982, either had had sex with Dugas or had had sex with someone who had.  This cluster epidemiological study was the first to prove that GRID/HIV/AIDS was transmissible via sex and was the work of a single (then unknown) infectious agent. 

And now...back to our regularly scheduled program.
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Offline sharkdiver

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Re: In your opinion, what is a long term survivor?
« Reply #155 on: November 23, 2009, 02:36:05 AM »
I would respectfully suggest that Long Term Survivors be defined as anyone diagnosed with HIV or AIDS prior to 1996 when first generation protease inhibitors became available.  Those of us diagnosed before the advent of effective treatments will always view HIV very differently than someone diagnosed today, put on a once daily regimen, and told to return in six months for follow-up.

People diagnosed with any stage of HIV disease today will never be treated as the "walking dead" the way we were. After my AIDS diagnosis in 1993, no one, and I mean no one, believed that I was going to live to be 25. (I was 21 at the time.)  

Nor will people diagnosed after 1996 have to endure watching their friends, neighbors, fellow AIDS activists, and support group, if any, waste away, develop cancers and OIs that most doctors have never heard of, and die.  

Nor will someone diagnosed today likely turn into a walking skeleton like I slowly did, and have to go for chemotherapy surrounded by other walking skeletons being given infusions to treat their going blind from CMV or mad from systemic Kaposi's sarcoma lesions.

Nor will they have to take some of the truly awful antivirals that first came out, such as AZT monotherapy, liquid Norvir, original formula ddI, or ddC.  I remember taking AZT and, several meds later,  took Crixivan, delavirdine, and acyclovir three times a day on an empty stomach and 3TC twice daily with or without food. My Crixivan/delavirdine/3TC regimen was later augmented with Viread, which had to be taken WITH food.  The whole time, I was also on numerous other medications (e.g., calcium supplements) which could not be taken with any of those, resulting on my entire day revolving around my meds.  I managed to do take t.i.d Crixivan from 1996-2006.

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.



thank you for sharing this

Offline AndyArrow

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Re: In your opinion, what is a long term survivor?
« Reply #156 on: November 23, 2009, 03:54:55 AM »
This is how you help your fellow LTS's who experienced similar events. And this is how you help the newly diagnosed, or those like myself, understand and respect your struggles in a way that doesn't turn them off.


Firstly, I don't come to the LTS forum to help others LTSers get over our shared past but try to find help and or give help to the new crap that I/we are now going through because of having lived with this virus for a prolonged time.

Secondly, and for me more importantly and the reason I highlighted your comment is that I come to the LTS forum so that I don't have to hear that talking about my esophageal stricture, hole in my stomach from my feeding tube, my rotting teeth, my painful PN or a whole host of other problems are "turning someone off".  That remark was extremely offensive and insensitive.  It is remarks like that have turned me away from the LWH forum and why I mainly post in the LTS forum.  

If reading about my struggles turns you off, I kindly suggest you don't read them.  

AA
« Last Edit: November 23, 2009, 03:59:51 AM by AndyArrow »
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline Dennis

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Re: In your opinion, what is a long term survivor?
« Reply #157 on: November 23, 2009, 07:42:34 AM »

Firstly, I don't come to the LTS forum to help others LTSers get over our shared past but try to find help and or give help to the new crap that I/we are now going through because of having lived with this virus for a prolonged time.

Let me see if I understand. You don't come to the LTS forum to help other LTSs, but you try to find help or give help?

Thank you for making my point.

Secondly, and for me more importantly and the reason I highlighted your comment is that I come to the LTS forum so that I don't have to hear that talking about my esophageal stricture, hole in my stomach from my feeding tube, my rotting teeth, my painful PN or a whole host of other problems are "turning someone off".  That remark was extremely offensive and insensitive.  It is remarks like that have turned me away from the LWH forum and why I mainly post in the LTS forum.  

If reading about my struggles turns you off, I kindly suggest you don't read them.  

AA

This is a perfect example of taking someone's words out of context. It's also a bit dramatic. I didn't realize comments like that ran rampant in the Living With Forum.

Since I've managed to upset the entire LTS community, at least here on AM, let me go on to say that since the LTS forum has been opened, I see very few threads started for the sole purpose you state you need here.

In fact, when I read through the LTS thread, I see a remarkable similarity to that of the Living With forums. To go even further, I think almost every thread started in the LTS (with the exception of a handful) would fit in very well with the Living With forums since they are not ONLY related to LTS. Here are some example topics on the first page alone of the LTS forum...H1N1, higher education, Truvada and Insentress, every other day dosing, no life insurance, best places to chat online, Gabapentin, bactrim...The list goes on and on. Point is, these topics are not "unique" to LTSs.

Another member proposed a new welcome thread. In it he states "This forum is a result of LTS members, asking for a place to discuss issues, that are unique to those who lived thought the initial decades of HIV." Where are these threads in the LTS forum that discuss these "unique" issues.

Now, I know some of you will go on to say I'm being insensitive. Let me stop you right there! It's not being insensitive, it's just an observation.

Offline Dachshund

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Re: In your opinion, what is a long term survivor?
« Reply #158 on: November 23, 2009, 08:01:01 AM »
Let me see if I understand. You don't come to the LTS forum to help other LTSs, but you try to find help or give help?

Thank you for making my point.

This is a perfect example of taking someone's words out of context. It's also a bit dramatic. I didn't realize comments like that ran rampant in the Living With Forum.

Since I've managed to upset the entire LTS community, at least here on AM, let me go on to say that since the LTS forum has been opened, I see very few threads started for the sole purpose you state you need here.

In fact, when I read through the LTS thread, I see a remarkable similarity to that of the Living With forums. To go even further, I think almost every thread started in the LTS (with the exception of a handful) would fit in very well with the Living With forums since they are not ONLY related to LTS. Here are some example topics on the first page alone of the LTS forum...H1N1, higher education, Truvada and Insentress, every other day dosing, no life insurance, best places to chat online, Gabapentin, bactrim...The list goes on and on. Point is, these topics are not "unique" to LTSs.

Another member proposed a new welcome thread. In it he states "This forum is a result of LTS members, asking for a place to discuss issues, that are unique to those who lived thought the initial decades of HIV." Where are these threads in the LTS forum that discuss these "unique" issues.

Now, I know some of you will go on to say I'm being insensitive. Let me stop you right there! It's not being insensitive, it's just an observation.

It's obvious from the replies you continue to receive that you don't have the sycophantic following you enjoy in AMG. Telling, that not one single LTS has posted  in your defense. Telling, that up to this point you have never posted in LTS. Revealing of your character. This isn't AMG where you can throw one of your hissy fits and quit. If you don't think the LTS forum is necessary then don't post here. However your disdain will be met with pushback. You're not a LTS by any stretch of the imagination.

Offline Dennis

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Re: In your opinion, what is a long term survivor?
« Reply #159 on: November 23, 2009, 08:05:36 AM »
It's obvious from the replies you continue to receive that you don't have the sycophantic following you enjoy in AMG. Telling, that not one single LTS has posted  in your defense. Telling, that up to this point you have never posted in LTS. Revealing of your character. This isn't AMG where you can throw one of your hissy fits and quit. If you don't think the LTS forum is necessary then don't post here. However your disdain will be met with pushback. You're not a LTS by any stretch of the imagination.

Please don't attempt to bully me. I've had HIV/AIDS for almost 20 years. It's take a bit more than a few people trying to speak for the entire HIV/AIDS community to back  me down.

Offline Dachshund

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Re: In your opinion, what is a long term survivor?
« Reply #160 on: November 23, 2009, 08:17:36 AM »
Please don't attempt to bully me. I've had HIV/AIDS for almost 20 years. It's take a bit more than a few people trying to speak for the entire HIV/AIDS community to back  me down.

Whatever. One thing your silly research link failed to include was the ability of a LTS to recognize bullshit. Your sole reason when you waddled in here was to try and settle the score for one of your sychophantic girlfriends who got her panties in a wad.

Offline Jeff G

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Re: In your opinion, what is a long term survivor?
« Reply #161 on: November 23, 2009, 08:52:22 AM »
 I started a topic here once about Bactrim . The reason I started it in LTS section is because my question was unique and meant only to be considered by members like myself  that had been on Bactrim for 25 years and then discontinued it when our numbers got better .


Offline sharkdiver

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Re: In your opinion, what is a long term survivor?
« Reply #162 on: November 23, 2009, 09:52:13 AM »
The people complaining, don't really post in this forum?   I see a pattern.

There are 12 other forums (more if  you are Spanish speaking and more if you are a woman) and we can't have one to ourselves?

Offline BT65

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Re: In your opinion, what is a long term survivor?
« Reply #163 on: November 23, 2009, 10:30:23 AM »
, higher education, Truvada and Insentress, every other day dosing, no life insurance, best places to chat online, Gabapentin, bactrim...The list goes on and on. Point is, these topics are not "unique" to LTSs.

This is not true, that these problems aren't "unique" to LTS'ers.  Those of us, who have had to go through the dark ages of medications, and our bodies deteriorating because of long-term infection, would like information from others who can understand these issues.  Sometimes we have more fear than the newer-diagnosed because of what we've been through.  Some of us don't work, and need to know how we're going to be able to pay for our burial.  Some of us need to discuss the use of Gabapentin to treat our severe PN.  The list goes on.  Obviously you've never dealt with any of these issues yourself, for years like some of us have, or you wouldn't make such an assinine remark.  Dachs was right.  This isn't the AMG forum, where people put up with your continuing issues.  And you never post here except to stir up trouble.  I've never seen one thread you've posted in in support of another member, or to offer help.  It's very irritating, frankly.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Joe K

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Re: In your opinion, what is a long term survivor?
« Reply #164 on: November 23, 2009, 01:40:53 PM »
I will be honest, I am so frustrated with some of the comments here, about what constitutes being a LTS. It is darn near impossible to quantify, in a short concise manner, what it means to be a LTS. How do we condense decades, of some of the most horrific things you could imagine, into mere words? How do we convey, to those who are not LTS, why we need a very special place to call our own. Maybe this will help.

It has been suggested that Long Term Survivor, means just that, survivor, not a victim and certainly not a martyr. I must strongly disagree, because every day I am a victim and a survivor. While I speak as a survivor, every day I experience the loss of decades. I so want dinner parties, with people my age and then I stop, and remember, they are all dead. Daily, I find myself a victim, to a virus that continues to ravage my body, mind and spirit. I am a victim, each and every time one of my medications fails me. I am a victim, when I mourn all that I have lost and I still feel guilty that I survived. As I progress in years, I fall victim to health issues that are increasingly difficult to manage and I no longer fear death, as I now see it as another option to the life I am forced to live.

I survive, because I had the best teachers in the world. My friends and loved ones, who are gone, are where I learned how to fight the virus and to never give up control of your own destiny. I survive, because I learned how to wall off the utter horror, of that first decade and to channel my pain into advocating for others. I survive, in part, because I am just too stubborn to die, especially from some stinking virus. I survive, in hopes of finding a medical regime, that would allow me a moderate quality of life. I survive, as a testament to those who went before me, to remind the world of the true horrors of HIV. I survive, by creating positive power, through helping others.

I survive, in part, because of this very forum. This is the forum, where I recently described my horrible dreams and waking episodes of such horror, with hope that someone could help me. Due to the audience here, I did not need to say much, about what I was experiencing, until many of you commented, both tenderly and knowingly. For me, it is that connection, that shared sense of experience, that defines a LTS. Call it a generational thing, fine, but the fact remains, that LTS have lived and survived the first decades of HIV, and you cannot impart those experiences on the more recently infected.

One of the first things I tell a newly infected person, is the idea that sometimes in life, for things that really matter, it is good to be selfish.  For me, this is one of those times. I want the LTS forum to contain posts from LTS, to other LTS. While I realize that I have always advocated that this forum be open, for posting by all members, the situation has changed and as such, I support altering the welcome thread.

What it all comes down to for me, is I need a place, where I can make a simple post and get the help I need, without having to explain myself or my feelings. The reason I need this place, is because, given my fragile mental health, a short post is often, all I can manage. There are valid reasons for restricting this forum to posts from LTS only, and just as this forum was created by and for LTS, there should be no reason why our simple request should not be considered.

Offline Dennis

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Re: In your opinion, what is a long term survivor?
« Reply #165 on: November 23, 2009, 02:11:44 PM »
Joe, all of what you stated above I understand and respect. However, other than losing a fortitude of friends to HIV, how do your feelings differ any different than mine? They don't.

Although I have not lost friends and family to AIDS, this makes me no less a LTS. The fact that my experiences with HIV/AIDS differ than yours, makes me no less a LTS.

My objection is not to discontinue a forum of this type. What I do object to is someone telling me my fears and experiences are any less than real just because they don't compare to their level of fear or experiences. 

I've lived with this virus for almost 20 years with very few complications. As I mentioned previosly, this may be due to choices I've made, choices others have made, and some plain old good luck. This isn't bragging. In fact, I'm extremely thankful. However, it still makes me no less a LTS than anyone here.


Offline Dennis

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Re: In your opinion, what is a long term survivor?
« Reply #166 on: November 23, 2009, 02:26:29 PM »
Whatever. One thing your silly research link failed to include was the ability of a LTS to recognize bullshit. Your sole reason when you waddled in here was to try and settle the score for one of your sychophantic girlfriends who got her panties in a wad.

Due you even understand the definition of the term sychopantic? I reckon not, as it makes absolutely no sense in the context of this thread. And please pray tell who my sychophantic girlfriend is "who got her panties in a wad."

Offline anniebc

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Re: In your opinion, what is a long term survivor?
« Reply #167 on: November 23, 2009, 03:45:04 PM »
Dennis, Dach I think the best thing to do here is to is to put each other on ignore or just don't respond to each other any more in this thread, the back and forth arguments and personal attacks are going nowhere..and lets face it you guys are never going to agree on this.

Keep it civil guys.

Hugs
Jan

Ok guys what part of this did you not understand...please stop this now, it's going no where...thank you for your cooperation.

hugs
Jan
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Never knock on deaths door..ring the bell and run..he really hates that.

Offline MWCLTonline

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Re: In your opinion, what is a long term survivor?
« Reply #168 on: November 23, 2009, 04:04:35 PM »
One of the first things I tell a newly infected person, is the idea that sometimes in life, for things that really matter, it is good to be selfish.  For me, this is one of those times. I want the LTS forum to contain posts from LTS, to other LTS. While I realize that I have always advocated that this forum be open, for posting by all members, the situation has changed and as such, I support altering the welcome thread.

;) Oct. 3rd, 1991, here! And killfoile, you're one of the first POZ stars that I gravitated to when I first began My Journey...  ;D  I can live with, understand and support that our Forum be open to All -to come in, pick our brains, learn our history and hopefully feel embraced and included within the entire HIVe (CommUNITY), only we can post to each other in it...

Prejudices, it is well known, are most difficult to eradicate from the heart whose soil has never been loosened or fertilized by education; they grow there, firm as weeds along rocks.
-  Charlotte Bronte

"When dealing with people, let us remember we are not
dealing with creatures of logic. We are dealing with
creatures of emotion, creatures bristling with prejudices
and motivated by pride and vanity."  Ė Dale Carnegie

Thanks for allowing me to share my Journey with y'all.

Best Regards,
Michael   

 
"I used to be afraid of dying, but I'm not anymore.
I'm more afraid of what happens to the people who live..."
from "And The Band Played On"
 
"If liberty means anything at all,
it means the right to tell people what they do not want to hear."
George Orwell


 8) http://cid-475412487967479f.skydrive.live.com/browse.aspx/.Public/MWCLTonline%20Web
"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 Miss Philicia

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Re: In your opinion, what is a long term survivor?
« Reply #169 on: November 23, 2009, 05:35:24 PM »

Although I have not lost friends and family to AIDS, this makes me no less a LTS. The fact that my experiences with HIV/AIDS differ than yours, makes me no less a LTS.

Actually I know absolutely nothing about your experiences as a LTS.  Zilch.  The only thing I know about you are the endless travails of Carol Ann, etc.


I've lived with this virus for almost 20 years with very few complications. As I mentioned previosly, this may be due to choices I've made, choices others have made, and some plain old good luck. This isn't bragging. In fact, I'm extremely thankful. However, it still makes me no less a LTS than anyone here.


Uh, having 2 t-cells sure ain't "nothing" as far as I've heard.  I'd not know since I've never dipped that far down, but then I go to the doctor regularly.
« Last Edit: November 23, 2009, 05:38:17 PM by Miss Philicia »
"Iíve slept with enough men to know that Iím not gay"

Offline AndyArrow

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Re: In your opinion, what is a long term survivor?
« Reply #170 on: November 23, 2009, 05:42:43 PM »
Let me see if I understand. You don't come to the LTS forum to help other LTSs, but you try to find help or give help?

Thank you for making my point.

This is a perfect example of taking someone's words out of context. It's also a bit dramatic. I didn't realize comments like that ran rampant in the Living With Forum.

Since I've managed to upset the entire LTS community, at least here on AM, let me go on to say that since the LTS forum has been opened, I see very few threads started for the sole purpose you state you need here.

In fact, when I read through the LTS thread, I see a remarkable similarity to that of the Living With forums. To go even further, I think almost every thread started in the LTS (with the exception of a handful) would fit in very well with the Living With forums since they are not ONLY related to LTS. Here are some example topics on the first page alone of the LTS forum...H1N1, higher education, Truvada and Insentress, every other day dosing, no life insurance, best places to chat online, Gabapentin, bactrim...The list goes on and on. Point is, these topics are not "unique" to LTSs.

Another member proposed a new welcome thread. In it he states "This forum is a result of LTS members, asking for a place to discuss issues, that are unique to those who lived thought the initial decades of HIV." Where are these threads in the LTS forum that discuss these "unique" issues.

Now, I know some of you will go on to say I'm being insensitive. Let me stop you right there! It's not being insensitive, it's just an observation.

No!  You will not stop me right there.  I used a direct quote of yours saying that the struggles of LTSers can "turn off" you or those newly diagnosed.  You then went on to say that those comments don't "run rampant in the LWH and you are right they don't ... but they exist there ... they don't exist here. 

Again I say that your comment was offensive and insensitive and I ask the mods to give you a time out unless you apologize.
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline Dennis

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Re: In your opinion, what is a long term survivor?
« Reply #171 on: November 23, 2009, 05:47:55 PM »
I will apologige if my opinion may have offended you. However, I will not apologige for having an opinion of my own.

No!  You will not stop me right there.  I used a direct quote of yours saying that the struggles of LTSers can "turn off" you or those newly diagnosed.  You then went on to say that those comments don't "run rampant in the LWH and you are right they don't ... but they exist there ... they don't exist here. 

Again I say that your comment was offensive and insensitive and I ask the mods to give you a time out unless you apologize.

Offline Dennis

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Re: In your opinion, what is a long term survivor?
« Reply #172 on: November 23, 2009, 05:57:23 PM »
Actually I know absolutely nothing about your experiences as a LTS.  Zilch.  The only thing I know about you are the endless travails of Carol Ann, etc.

If it's got anything to do with drama here in the forums you're right up on it. I'll give you that. So far, my book, Carol Ann, and AMG has made it into a thread regarding the definition of LTS. What's next?

Uh, having 2 t-cells sure ain't "nothing" as far as I've heard.  I'd not know since I've never dipped that far down, but then I go to the doctor regularly.

And very well you should go to the doctor regularly. I, myself, go as often as needed, as well. I'm not quite sure what your'e attempting to imply.

Offline Dachshund

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Re: In your opinion, what is a long term survivor?
« Reply #173 on: November 23, 2009, 06:08:37 PM »
Due you even understand the definition of the term sychopantic?

Sure do and I even know how to spell it. See you in Vegas toots! My love to your girls. 
« Last Edit: November 23, 2009, 06:21:31 PM by Dachshund »

Offline anniebc

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Re: In your opinion, what is a long term survivor?
« Reply #174 on: November 23, 2009, 06:27:00 PM »
Christ have you guys got me on ignore or what!!!..or are you just not reading my posts.

Dach, Dennis Miss P...please consider this a warning...now for God sake put each other on ignore and stop all this NOW..I'm getting a bloody ulcer.

Hugs
Jan
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline Miss Philicia

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Re: In your opinion, what is a long term survivor?
« Reply #175 on: November 23, 2009, 06:27:16 PM »
See you in Vegas toots! My love to your girls. 

Are we still sharing a room, Doxelle?  I can only imagine the Gucci thong shenanigans down by the pool with our three martini lunches.  The talons will surely sharpen by the hour.
"Iíve slept with enough men to know that Iím not gay"

Offline AndyArrow

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Re: In your opinion, what is a long term survivor?
« Reply #176 on: November 23, 2009, 06:28:03 PM »
I will apologige if my opinion may have offended you. However, I will not apologige for having an opinion of my own.

When I post about ongoing medical problems I have or have had due to horrible meds I have taken in the past or simply long term effects of the virus itself people in the LTS forum aren't "turned off" they offer help/understanding/sympathy.  

I do not / did not wish you to apologize for your opinion.  I wanted you to apologize for your words which were offensive and insensitive.  Since, you can't seem to comprehend that what you said was hurtful I shall have no further dealing with you on this topic.
« Last Edit: November 23, 2009, 06:32:04 PM by AndyArrow »
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline Miss Philicia

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Re: In your opinion, what is a long term survivor?
« Reply #177 on: November 23, 2009, 06:28:48 PM »
Christ have you guys got me on ignore or what!!!..or are you just not reading my posts.

Dach, Dennis Miss P...please consider this a warning...now for God sake put each other on ignore and stop all this NOW..I'm getting a bloody ulcer.

Hugs
Jan

Sorry Jan, my last post was at the same time as yours.  I'll kindly, at your request, disembark from this fair thread.
"Iíve slept with enough men to know that Iím not gay"

Offline anniebc

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Re: In your opinion, what is a long term survivor?
« Reply #178 on: November 23, 2009, 06:33:26 PM »
Thank God and thank you  (big sigh of relief)..ulcer is getting better already.

Hugs
Jan
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline Dachshund

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Re: In your opinion, what is a long term survivor?
« Reply #179 on: November 23, 2009, 06:34:40 PM »
Sorry Jan, a case of Maalox is on the way. :-*

Offline leatherman

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Re: In your opinion, what is a long term survivor?
« Reply #180 on: November 23, 2009, 06:37:39 PM »
I wonder if those with other manageable, degenerative diseases, such as breast cancer, quibble about such things.

...In fact, I didn't start treatment until December of 2002, 14 years after being diagnosed.

I've never been to a funeral of someone who has died of AIDS. Hell...I don't even know of anyone personally who has died of AIDS. ...

What I do object to is someone telling me my fears and experiences are any less than real just because they don't compare to their level of fear or experiences.
you're the one who swaggered into the room first accusing people of quibbling, then being victims, then dwelling in the past. At first you had the temerity to brag about how your experience with HIV wasn't so bad; but then you got all mad when others pointed that your un-traumatic past then doesn't qualify you to cast aspersions on the rest of us.  ::)

I will apologige if my opinion may have offended you. However, I will not apologige for having an opinion of my own.
I don't want you to apologize for your opinion; but I would like you to apologize for being a rude insensitive boob. And then I would like you to quit posting for a while, so I can believe your, (what would this be?) your third apology actually meant something. (and using spellcheck would be nice too. besides it'll slow down your responses and give you some time to think about what you're posting)
leatherman (aka mIkIE)


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

Offline Dennis

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Re: In your opinion, what is a long term survivor?
« Reply #181 on: November 23, 2009, 07:10:26 PM »
You then went on to say that those comments don't "run rampant in the LWH and you are right they don't ... but they exist there ... they don't exist here. 

If those types of comments do not exist here in the LTS forum (by your own admission above) then what is all the fuss about changing the structure of the LTS forum?

It would appear that even the LTS are conflicted amongst themselves about what they expect from such a private space for themselves.

Offline anniebc

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Re: In your opinion, what is a long term survivor?
« Reply #182 on: November 23, 2009, 07:49:44 PM »
Dennis

I'm going to ask you to step away from  this thread, it seems all you are doing is upsetting everyone, so please stop this now..Please consider this a warning

Please don't come back telling me you have a right to your opinion, I don't need you to tell me that..but when your opinion is hurting people then I will step in and put a stop to it, and if that means giving you a TO then that's what I will do...so please no more posts...thank you for your cooperation.

Jan
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline Nancy

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Re: In your opinion, what is a long term survivor?
« Reply #183 on: December 07, 2009, 07:58:07 PM »
So tell me Moffie...

Am I allowed to post here  ;D
Nancy
Diagnosed Oct 1993
Member since Sept 2002
Meds Dec 2003

Offline Joe K

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Re: In your opinion, what is a long term survivor?
« Reply #184 on: December 07, 2009, 09:18:46 PM »
Please read the other post, by me, on proposed change to welcome thread. This whole discussion centered on who could post in this forum and the only criteria was you tested poz before HAART. You tested in 1993, so you are a certifiable dinosaur, just like the rest of us.

Offline Nancy

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Re: In your opinion, what is a long term survivor?
« Reply #185 on: December 07, 2009, 09:28:59 PM »
aww Killifoile, you have such a way with words   ;D

But a dam dinosaur? 
Nancy
Diagnosed Oct 1993
Member since Sept 2002
Meds Dec 2003

Offline anniebc

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Re: In your opinion, what is a long term survivor?
« Reply #186 on: December 07, 2009, 09:51:55 PM »
aww Killifoile, you have such a way with words   ;D

But a dam dinosaur? 

Yep..but still a beautiful one I bet.. ;D..good to see you are still keeping an eye on us and glad to see you back Nancy.

Hugs
Jan :-*
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline Moffie65

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Re: In your opinion, what is a long term survivor?
« Reply #187 on: December 08, 2009, 01:19:29 PM »
Nancy; as Joe and Jan have said, you certainly qualify to join the conversation in this fourm!  In fact seeing your posts here have really made my day, and I hope you stick around and let us know how things are for you and yours.  :)
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 joejoe1972

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Re: In your opinion, what is a long term survivor?
« Reply #188 on: December 15, 2009, 03:27:55 PM »
having been diagnosed hiv+ in 1991 and AIDS in 2001, having suffered several oi's and been in the hospital multiple times due to the side affects of long term taking of these meds, you guys know what I'm talking about I'm sure. i would classify ltrs as people at the least 10 years or more. we've all had our own personal battles to fight and it would be nice to have a forum just for us. just my humble opinion.

[attachment deleted by admin]
Hiv+ since 1991, AIDS since 2001

Offline Miss Philicia

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Re: In your opinion, what is a long term survivor?
« Reply #189 on: December 15, 2009, 03:43:44 PM »
Hi Joe, nice to see you join all of us with your Billabong muscle tee :)  Close you kitchen cabinet doors next time before using your web cam. (j/k)
"Iíve slept with enough men to know that Iím not gay"

Offline bear60

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Re: In your opinion, what is a long term survivor?
« Reply #190 on: December 15, 2009, 04:10:26 PM »
Hi Joe
Welcome aboard.
Why not start your own thread here in the  LTS forum and introduce yourself.

Joel
Poz Bear Type in Philadelphia

Offline joejoe1972

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Re: In your opinion, what is a long term survivor?
« Reply #191 on: December 15, 2009, 05:11:25 PM »
i just did, but thank you for the suggestion, I appreciate it.
Hiv+ since 1991, AIDS since 2001

Offline Boo Radley

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Re: In your opinion, what is a long term survivor?
« Reply #192 on: December 15, 2009, 06:44:19 PM »
A long term survivor is anyone who personally remembers Ron and Nancy Reagan...  history books don't count.

I know this would be more work for the Mods but this forum seems like a great reason to implement SMF Member Groups, or at least one group -- NON-LTS.  Anyone who doesn't wish to have us old-timers harsh their buzz could be added to the NON-LTS group and never see this forum again. 

I'd love to be in a NO-AMI? group so I'd never see another Am I Infested? post again. 

Member Groups are not exclusive and a person can belong to several groups although I'm not advocating such extensive changes.  If groups were created simply to remove a forum from someone's view it wouldn't be too difficult to maintain -- offhand there could be NO-AMI? (I DEMAND to be first in that group), NO-LTS, and maybe even a NO-YY to keep XYs from veering into the Poz Women forum.   

Just for fun I installed SMF on a website I own and invite you to join so I can figure out how much hot air I'm full of:

http://zachevans.net/simplemachinesforum/index.php   

You don't have to use a real email address because registration is automatic.   When I get bored with this I'll delete the SMF installation altogether.  I can't see how to easily allow new members to define the member group(s) they'd belong in so by default all new users have access to all boards.  Short of providing a poll or something like that it appears it would have to be done case by case or only as necessary...

Thanks!



String up every aristocrat!
Out with the priests and let them live on their fat!





Everything I do, say, think, excrete, secrete, exude, ooze, or write © 2007 Sweet Old Boo, Inc.

Offline J.R.E.

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Re: In your opinion, what is a long term survivor?
« Reply #193 on: December 15, 2009, 07:58:52 PM »


Just for fun I installed SMF on a website I own and invite you to join so I can figure out how much hot air I'm full of:

http://zachevans.net/simplemachinesforum/index.php   




 :)  "Am I disinfected",..."Meds, just like taking aspirin" I'm busting a gut here !!  :)

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 joejoe1972

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Re: In your opinion, what is a long term survivor?
« Reply #194 on: December 15, 2009, 09:42:52 PM »
killfoile, I have to say your words were beautiful and echoed the haunts of my life. I could have not put it better. I was diagnosed march 13, 1991 and have seen horrors and sadness incomprehensible to most others.Thank you, you are what i hoped to find on this forum when i joined today. You have restored some hope that i was losing in my fight with this damn disease. I look forward to further post from you my friend. Keep up the good fight
Hiv+ since 1991, AIDS since 2001

Offline heartforyou

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Re: In your opinion, what is a long term survivor?
« Reply #195 on: December 29, 2009, 06:14:53 PM »
In my opinion LTS were diagnosed or infected before HAART.

Or maybe if you ever had to swallow that liquid orange Norvir stuff qualifies you as a LTS...lol
Man, that is one of the worst memories.

But I wonder why any one on here would envy any of us LTS?


xx Hermie, who is glad so many of the LTS are still around to testify
Diagnosed in 1987 and still kicking
Viread, Kivexa (Epzicom),Viramune once daily

Happiness is the freedom of breathing fresh air every day.

 


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