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Author Topic: In your opinion, what is a long term survivor?  (Read 42733 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

Online 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
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Online 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

Online 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

Online 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

Online 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

Online 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.

Online 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 »
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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
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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
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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."       

     
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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.
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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

Online 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

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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

 


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