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Main Forums => Pre-HAART Long-Term Survivors => Topic started by: Dan J. on April 13, 2007, 05:06:10 pm

Title: Long term survivors under 50 where do they fit in?
Post by: Dan J. on April 13, 2007, 05:06:10 pm
I have been HIV positive for 21 years. I found out when I was 23yrs old, I am now 44. do I "fit" the criteria for this forum?

Dan
Title: Re: Long term survivors under 50 where do they fit in?
Post by: Ann on April 13, 2007, 05:32:04 pm
Dan,

You don't have to be over 50 to post in the LTS forum, and you certainly qualify as a Long Term Survivor!

Have a read of the LTS Welcome thread:

http://forums.poz.com/index.php?topic=11166.0

Ann
Title: Re: Long term survivors under 50 where do they fit in?
Post by: Miss Philicia on April 13, 2007, 05:34:33 pm
Dan, I'm younger than you (42) and I post in LTS.  I found out when I was 28, but had been infected probably around the age of 24.  But more importantly, why do you not feel like you fit in the LTS area in the first place?
Title: Re: Long term survivors under 50 where do they fit in?
Post by: Dan J. on April 13, 2007, 05:38:23 pm
Because I am under 50.
Title: Re: Long term survivors under 50 where do they fit in?
Post by: DanielMark on April 13, 2007, 05:51:39 pm
Twenty one years? Dan, you have been a survivor longer than I have! I think you definitely belong in the discussions here.

Daniel
Title: Re: Long term survivors under 50 where do they fit in?
Post by: Miss Philicia on April 13, 2007, 05:58:33 pm
Because I am under 50.

And where did you yank that magic number from?

Like I said, I'm younger than you but I participate in there.  I also just saw someone newish posting in there that is 37 and has been infected 20 years.  If you honestly feel you have no similarly aged company then I guess I'm just chopped liver.
Title: Re: Long term survivors under 50 where do they fit in?
Post by: Nico on April 13, 2007, 08:15:30 pm
Dan,
I am 43 and have been poz since 1989.  I fit in here - no question.  Join in and share.

Rog
Title: Re: Long term survivors under 50 where do they fit in?
Post by: aztecan on April 13, 2007, 08:32:55 pm
Hey Dan,

I'm still less than 50 (barely). But, more to the point, you are a long-term survivor by virtue of the length of time you have lived with the bug.

Like Ann said . . .

HUGS,

Mark
Title: Re: Long term survivors under 50 where do they fit in?
Post by: Nico on April 13, 2007, 08:35:41 pm
Az,
That is countdown T - 60 days????   ;D

Hugs!
Rog
Title: Re: Long term survivors under 50 where do they fit in?
Post by: Andy Velez on April 13, 2007, 10:46:40 pm
Dan, just include yourself in. Use this forum in whatever ways are useful to you.

 

Title: Re: Long term survivors under 50 where do they fit in?
Post by: Dan J. on April 14, 2007, 12:39:44 am
And where did you yank that magic number from?

Like I said, I'm younger than you but I participate in there.  I also just saw someone newish posting in there that is 37 and has been infected 20 years.  If you honestly feel you have no similarly aged company then I guess I'm just chopped liver.

YOU are most certainly not chopped liver to me.  How about a philly cheese steak sandwich? LOL
Title: Re: Long term survivors under 50 where do they fit in?
Post by: Bucko on April 14, 2007, 01:50:50 am
I'm 47, been poz since maybe the late 70s, certainly no later than 1984.

It never occurred to me that I wouldn't be welcome to post here, and I neglected to read the welcome sticky.

Brent
(Who knows where he's welcome)
Title: Re: Long term survivors under 50 where do they fit in?
Post by: dgr20002 on April 15, 2007, 05:23:52 pm
I am only 45 and I think dealing with this for 20 years qualifies me :-)

David
Washington, DC
Title: Re: Long term survivors under 50 where do they fit in?
Post by: aztecan on April 16, 2007, 12:59:01 am
Hey Rog,

Not that soon.  ;)

More like 90.

HUGS,

Mark
 ;D
Title: Re: Long term survivors under 50 where do they fit in?
Post by: bravebuddharich on April 18, 2007, 12:37:38 pm
I'm 42, been poz for 20 years - that feels strange to me! I forget how young I was when this whole journey started!! I am thinking of all the men who I knew who died back in the 1980's and early 90's. FOUR friends died last year, but I do think there were other factors involved as far as how they were living with HIV... Let's celebrate all longterm survivors!! (:

Metta,
Rich
Title: Re: Long term survivors under 50 where do they fit in?
Post by: 30Years on April 18, 2007, 01:48:06 pm
Honestly I don't know where I fit in....I'm 32...got infected through a blood transfusion when I was 7....and heterosexual....
Title: Re: Long term survivors under 50 where do they fit in?
Post by: Miss Philicia on April 18, 2007, 01:50:24 pm
Honestly I don't know where I fit in....I'm 32...got infected through a blood transfusion when I was 7....and heterosexual....

I'd say you've survived a "long time" hence you belong here.  Welcome to the forums.  Just because your personal experience does not follow many others does not mean you do not belong, but instead only expands the discussion on the board in a positive manner.
Title: Re: Long term survivors under 50 where do they fit in?
Post by: 30Years on April 18, 2007, 01:58:37 pm
I'd say you've survived a "long time" hence you belong here.  Welcome to the forums.  Just because your personal experience does not follow many others does not mean you do not belong, but instead only expands the discussion on the board in a positive manner.

Thanks...many times I feel out of place because I am heteorosexual.  This is not a Gay disease...it's a people disease...I commend the Gay community for being so embracing of the disease...to me...the Straight community is a larger problem....to me they are the ones with the strong Stigma.
Title: Re: Long term survivors under 50 where do they fit in?
Post by: DanielMark on April 18, 2007, 02:37:04 pm
Thanks...many times I feel out of place because I am heteorosexual.

Hi 30Years,

Speaking for myself – a man who is Gay – I don't care if you are hetero or homo or from another galaxy. As I understand it, these forums don’t claim to be a dating service, only support for anyone living with HIV/AIDS. All that matters is that you've survived for more years than anyone should have to. I’d say this is definitely a forum for you too.

Daniel
Title: Re: Long term survivors under 50 where do they fit in?
Post by: 30Years on April 18, 2007, 03:29:51 pm
Thanks...many times I feel out of place because I am heteorosexual.

Hi 30Years,

Speaking for myself – a man who is Gay – I don't care if you are hetero or homo or from another galaxy. As I understand it, these forums don’t claim to be a dating service, only support for anyone living with HIV/AIDS. All that matters is that you've survived for more years than anyone should have to. I’d say this is definitely a forum for you too.

Daniel

Thanks I really appreciate that.  It means a lot.
Title: Re: Long term survivors under 50 where do they fit in?
Post by: DanielMark on April 18, 2007, 03:40:45 pm
 ;D

Like I wrote in my song Homo's Lament, 30Years . . .

Love is love no matter who
Is loving me or loving you
I was made from love

That works both ways in my mind.
Title: Re: Long term survivors under 50 where do they fit in?
Post by: mudman8 on April 18, 2007, 06:30:14 pm
I must have been infected in 81 but didn't test till I was 37 around 91.

It's just a disease but teh str8 community has big hang ups thinking it's "gay".

glad yer with us 30 and have a place to vent.
Title: Re: Long term survivors under 50 where do they fit in?
Post by: tuggem on April 18, 2007, 06:42:50 pm
Sorry I haven't had the time to participate in the fora lately.  I am just recently 48, having been infected at age 25 some 21+ years ago.  I suspect that the age of 50 has been set as a cut-off for dealing with the many age-related factors that come up in addition to HIV, but we do need a forum for long-term survivors of any age.  It could be that we can tease out some issues that relate more to length of exposure than to age. 

At 50, for example, insurers will start to pay for yearly prostate exams for men.  Diabetes is more likely the older we get.  However, some of the weirder side-effects that I am experiencing may only come with long-term treatment.  How can we know if we don't discuss them?  My GP doc tells me that she is unable to say whether issues I am facing are due to age, medication, disease or something new that just hasn't been diagnosed yet.  I love her to pieces, and feel that she is as frustrated as I am to hear that.

I am most interested in the medical issues that relate to my life regardless of age or duration of treatment...and to get to know the rest of "us". 

Peace to you all...

Ron

Title: Re: Long term survivors under 50 where do they fit in?
Post by: cmbear on April 18, 2007, 07:39:28 pm
Hey, My name is Carl and have been POZ officially since 1985, but I can think back to when I lost my virginity on January 1, 1980.  I am 46 at this time.  I have over 700 t-cells and an undetectable viral load.  I am still working full-time as a Mental Health Case Manager, and live in NE Tennessee.  I am originally from NJ by way of FL and GA.  I am single :(,  but am optimistic in finding a LTR  ;D.

I can be reached best at cmbear9108@charter.net if anyone would like to chat or learn more.

Carl 
Title: Re: Long term survivors under 50 where do they fit in?
Post by: Queen Tokelove on April 18, 2007, 08:48:40 pm
My question is what is considered long term? 20+ years? This year makes my 10th year with this bug, I don't think I would be considered a newbie still even I am new to a lot of things regarding hiv.
Title: Re: Long term survivors under 50 where do they fit in?
Post by: mudman8 on April 19, 2007, 12:34:56 pm
ooops I guess yesterday I was too fast in posting I'm over 50 by 3 years, guess I should kick myself out of this and into the over 50 page. lol ::)
Title: Re: Long term survivors under 50 where do they fit in?
Post by: 30Years on April 19, 2007, 12:53:33 pm
My question is what is considered long term? 20+ years? This year makes my 10th year with this bug, I don't think I would be considered a newbie still even I am new to a lot of things regarding hiv.

LOL...I'm at 26 years...I wanna be "that Guy" who says..."I'm 85 and got diagnosed when I was 7."
Title: Re: Long term survivors under 50 where do they fit in?
Post by: tuggem on April 19, 2007, 06:37:40 pm
I hope you are able to stake that claim, my friend.

Ron
Title: Re: Long term survivors under 50 where do they fit in?
Post by: aztecan on April 19, 2007, 06:44:02 pm
Hey 30,

I'm with Ron. I hope you get to stake your claim as an octogenarian.

HUGS,

Mark
Title: Re: Long term survivors under 50 where do they fit in?
Post by: mark54 on April 19, 2007, 08:11:20 pm
i hope we're through with the over/under 50 thing cause i'm so happy with this area of the forum being created.  i have to admit i was starting to check the forum less and less until it was created.  as far as the age thing i really don't see much different from the 40's and the 50's and since i now have 2 sisters over 60 not much of a change there either.  it's plain old S.O.S.- different day.  but there is a big difference in being a long term survivor and it's attitude in how we face our challenges.  i am amazed at the variety of people who seem to be coming out of the wood work to join this thread.  i'm also a little amused most of us are claiming no significant health problems and proceeding to describe medical histories that would make mortal no pozs weak in the knees.  i really need to hear more about your lives cause frankly i was beginning to get the 'last man standing syndrome.'  and i wish i had known you all for a lot of years.
Title: Re: Long term survivors under 50 where do they fit in?
Post by: sierrarancher on April 20, 2007, 11:36:37 pm
I kind of see this group as people who were diagnosed before there were meds and hope.  Also, as the meds are becoming more 'fine-tuned' and more is learned about HIV, this current set of LTS will stand apart.  The experience we went thru, those days when there was no hope, a time-bomb ticking away inside of us.  Then there was the advent of some meds, then HAART.  Now more is being learned about the side effects-lipids, wasting, cancer, etc.  In the future, I believe the virus will be better managed, with fewer side effects, but many of us have in this LTS group had life-altering experiences because of HIV.  I've had 3 cases of cancer, pneumonia, neuropathy, ED, etc.  Emotionally, I've gone from men who ran out the door when I disclosed my HIV status, to men I had to 'wait and see' with, etc. 

I guess this forum is for those of us who feel we are kind of in uncharted territory, each with our own universe of experience with HIV, but a lot to share with each other.  Personally, it brings me relief to read the posts in the LTS forum.  I need the support, and not afraid to say that.  I'm glad I'm not the only one who is a bit 'tired' of with dealing with this on my own. 

Title: Re: Long term survivors under 50 where do they fit in?
Post by: tuggem on April 21, 2007, 12:27:03 am
Does anyone still talk of Lazarus Syndrome? 
Title: Re: Long term survivors under 50 where do they fit in?
Post by: Dan J. on April 22, 2007, 12:52:39 am
Welcome to the forum 30 years!

Dan J.
Title: Re: Who gets to belong to the Church of LTS?
Post by: megasept on April 26, 2007, 02:09:47 am
OK, I am 50 years, 128 days, old. Whew.....I qualify for the Church of LTS thread. Plus, POZ since 1991.

 8) -megasept
Title: Re: Long term survivors under 50 where do they fit in?
Post by: akcol on April 27, 2007, 09:27:16 am
My 36 year old fiance of eleven years (risk of loss of his health coverage for HIV HCV and Hemophilia meds delays a wedding) has been healthy and positive for 24 years. He and his affected younger brother.
This is an elite group with much wisdom to pass on newbies, and honor to the elite.
Congratulations all.
Title: Re: Long term survivors under 50 where do they fit in?
Post by: Salteen on May 10, 2007, 11:13:27 am
Hey, no worries I don't fit anywhere.  I am 23 years old and have had HIV for 23 years hahaha
Title: Re: Long term survivors under 50 where do they fit in?
Post by: tuggem on May 11, 2007, 08:03:27 am
You fit in my heart, Salteen.  Bless you.

Title: Re: Long term survivors under 50 where do they fit in?
Post by: hudstar on May 25, 2007, 01:06:15 pm
I'm 41 and been poz since 1988. That's half my life and all my adult life. Thinking of it I only had a little time frame for sexual exploration being negative and that exploration made me positive. Now that I come out from living in my self created Eden of endless travel and no commitment, my doctor told me to meet other gay men and I went to an all male gay pub ......seems 41 is old in gay years? -  I come out as HIV after 19 yrs running from stigma and I'm facing age discrimination...........LOL. The irony is I know I missed out on being sexually wild as a young guy and all the adulation and acceptable arrogance that comes with youth. That does not worry me, what worries me is at 41 I froze when asked by a stranger if I was a top or bottom............huh! Ummmm, I don't know, didn't stop long enough to find out over the past 19yrs - I couldn't tell this stranger I was too scared as my sensuality and urges were damn well scarred by those dreadful early years of HIV hysteria, violence and rejection.....  I couldn't actually say "lets go talk" and then if I'm at ease with trust - lets go experiment and if you hurt my feelings I'll deck you!........Houston we have a problem!
Title: Re: Long term survivors under 50 where do they fit in?
Post by: tuggem on May 25, 2007, 03:37:55 pm
Perhaps if you say you are versatile and that you like to start slow and see what happens the panic will pass.  I have a feeling that with the first kiss and caress, you will know what to do and how.

Peace to you.
Title: Re: Long term survivors under 50 where do they fit in?
Post by: hudstar on May 25, 2007, 03:48:18 pm
thanks.......... yeah fear is the issue and probably a need to feel important to somebody is root issue. Funny thing - it wasnt particulary hot sex when I got infected so minimal experience thereafter. Im not ready to go Oprah on that issue just yet :)
Title: Re: Long term survivors under 50 where do they fit in?
Post by: Buckmark on May 29, 2007, 04:28:36 pm
... I only had a little time frame for sexual exploration being negative and that exploration made me positive. ...  The irony is I know I missed out on being sexually wild as a young guy and all the adulation and acceptable arrogance that comes with youth.

I can completely relate to this.  I came out when I was 22, and was positive at 25, which didn't leave much time for any sexual exploration and discovery.  Especially given the small town (and even smaller gay community) where I was living in at the time.

Quote
That does not worry me, what worries me is at 41 I froze when asked by a stranger if I was a top or bottom............huh! Ummmm, I don't know, didn't stop long enough to find out over the past 19yrs - I couldn't tell this stranger I was too scared as my sensuality and urges were damn well scarred by those dreadful early years of HIV hysteria, violence and rejection..... 

I think the way you phrased this pretty much sums up my experience.  For me, I think that becoming HIV+ has really caused me to associated sex with very negative feelings and consequences, especially since it all happened so soon after I came out.  I had done something "wrong" by becoming infected, was paying the price, and still can't say I've ever completely forgiven myself.  Hence I have pretty much avoided any sexual exploration for the past 18 years.

In retrospect, I suppose I have to take some responsiblitiy for allowing myself to be "scarred" in this manner, as obviously there are plenty of folks who have not been.  I must admit to more than a twinge of envy when I see and hear of some folks' (sometimes very detailed) accounts of sexual experiences and exploration.  And I can't think of anything that makes me feel more inexperienced, inadequate or embarassed -- especially being 43 years old.

Quote
I couldn't actually say "lets go talk" and then if I'm at ease with trust - lets go experiment and if you hurt my feelings I'll deck you!........Houston we have a problem!

You know, this doesn't sound like such a bad way to proceed.

Quote
Funny thing - it wasnt particulary hot sex when I got infected so minimal experience thereafter.

Yep.  I often wonder if I would feel differently if my infection was the result of amazingly hot sex, instead of awkward, lukewarm sex.

I hope you don't mind me jumping in on your poast, Hudstar, but in my own way I really identified with much of what you said.  I figure it's about time that I was fucking honest about it all.

I hope this isn't considered a "hijack" of the thread -- it is (one of) my experiences of being a long term survivor under 50.

Regards,

Henry
Title: Re: Long term survivors under 50 where do they fit in?
Post by: hudstar on May 29, 2007, 07:11:39 pm
Hey Henry, you didn't jump in on my post, glad you related to what I said (well glad and not glad). I guess to most, on the surface, sex defines a gay man and sex being one thing that caused so much pain (emotional) is a catch 22. Not having had much to do with gay men beforehand I find I'm not use to the upfront, brash attitude towards sex and that closes me off. I will never accept the "you'll do" attitude of some major royal retards - that is my personality, not fear....LOL !  I'm in no way negative towards confidence in others, I just think for me I need emotional intelligence to relax me for the physical...........there is a lot of hot stuff I want to explore bigtime.

You said "In retrospect, you have to take some responsibility for allowing yourself to be "scarred"  I relate to that - I forgave myself for that scarring. I forgave myself for protecting my feelings as "sacred" at the expense of my horny youth and I've come out the other end still willing to explore. I realised my fear was locked in 1988 and that my fear I felt was that of a dopey 22yo kid suffering betrayal. The biggest step is to take over those fears as an adult by taking that burden off a 22yo - you got to forgive yourself for that - it is a very personal issue between you and your sensual identity. In the end you got to admit we all grew up in amongst those bad hysterical years and that we would be a bit scarred at the other end? I'll continue to have an open mind with me and sex as I know I can connect and explore with certain guys (I can count them on one hand). Glad you wrote on here Henry
Title: Re: Long term survivors under 50 where do they fit in?
Post by: bearby on May 30, 2007, 04:19:25 pm
 ;D OK this self proclaimed old man is still above ground and kicking his heels up !
yes I am a long term survivor of the hiv/aids stigma because I have a disease it doesn't have me nor will I ever allow it to get me down !
 I didn't begin taing meds until I was in the 40th year of my life even tho I was diagnosed as having aids back in December of 1987 ( which turned out to have been a false determination because the Dir that gave me the news wasn't my own but was a substitute one that wasn't up on hiv/aids knowledge because I guess of it was still  a new thing to encounter for some medical professionals at that time .
 But yet here I am doing what I said  I was doing and enjoying my life to the fullest much like I believe it was oh what was his name said live each moment to it's fullest because it may be your last and when I do depart from this mortal plane I intend to go kicking & screaming all the way  :D !
Title: Re: Long term survivors under 50 where do they fit in?
Post by: newbernswiss on June 12, 2007, 08:06:20 pm
I became positive at 29, I'm now a young 46. Looking forward to 50, which is the new 30 I hear.  I've never given up, did a major career change at 31, with CD4 count of 30 at the time. I'm still well, working full time, working on my masters degree, cd4 around 450 give or take a few. Have never had a detectable VL. This I have always found interesting especially since my cdy was below 50 for a couple of years. I thank whoever was and is looking out for me. I plan to continue on to at least 90+. Will let u all know how it goes, the great part is we all fit in together ;D
Title: Re: Long term survivors under 50 where do they fit in?
Post by: hudstar on June 13, 2007, 10:21:55 am
Newbernswiss, we do all fit in together as we share a common experience. It's interesting and comforting  to read comments on here and how people have changed direction in life and the attitude we have towards ourself since combination therapy came in to being. Glad you are at University, academia is a very nurturing environment. I did a double masters degree myself a few years back - immediatey after I got over my radiation treatment for lymphoma. With good viral loads and cd4 counts  - Im looking toward to an old age :)- already have my beach shack in sight.  Let us know what 50 is like?
Title: Re: Long term survivors under 50 where do they fit in?
Post by: redhotmuslbear on June 13, 2007, 11:32:55 am
Newb,
Good to see another member of the pozzie mid-life grad student club!  Do you slip often and refer to classmates as "the kids?"  Or get labelled "professor's pet" given the proximity in age to faculty and the added experience you bring to the classroom?  Amazing how the kids, esp the hot boys, will flock to me now to be project partners   ;D

Being another HIV freakzoid (acuired around 17, accepted Dx at 33, now off meds 89 weeks at 42 with awesome numbers), I'm curious as to what studies you may be enrolled in?  Geez.... undetectable VL makes you an Elite Controller <bitch>, while I'm just a Viremic Controller  :-\

Cheers,
David
Title: Re: Long term survivors under 50 where do they fit in?
Post by: Rusty on June 15, 2007, 03:36:07 pm
Hi

I am 32 years old been pos for 22 years.
Title: Re: Long term survivors under 50 where do they fit in?
Post by: Jimrican on June 30, 2007, 04:08:46 am
Hi everybody! I thank goodness, heaven, and/or whoever for this site and especially for this forum. I have discovered that catharsis is a great tool for emotional healing, and in that sense writing works for me better than a soothing pill would; specially at night

I’m 52 and I got infected back in 1993 (I know for sure), but I was not diagnosed until 1995. I have been practically asymptomatic for the last decade although the condition has exacerbated my allergies. Apart from that, a shingles episode started a mild neuropathy in my left foot. However, in general terms, I look and feel healthy. 

It was precisely the shingles episode what open my eyes to the fact that my viral load had increased from 40K to 160K in 5 years. My CD4 count is around 250, and my CBC is already showing the consequences of those stats. My low red and white blood cells counts are my worst fear right now. I’m beginning to feel tired and weakened.

 My recent blood counts motivated my partner, who thought he was HIV-, to get tested, but unfortunately the test showed he is positive. Ironically, I had been very calmed and focused on my health throughout the process, but discovering that my 33 y/o partner is positive has shaken me a little. My biggest concern is about financial issues since now we are two HIV+ in the same household. None of us is on meds yet, but what will happen when the time comes for medications. I will greatly appreciate if you share some light on services and programs for people like us in the mainland. We live in the Caribbean, and HIV issues are still a big taboo down here. Even for health professional.

I’d love to get feedback to my posting. How do you guys see my counts and stats?

May PEACE be with you!  Hugs, Jimmy G. 
Title: Re: Long term survivors under 50 where do they fit in?
Post by: JeffreyM on August 13, 2007, 04:56:37 am
I wasn't sure if I should post here, but decided to because of the difficulties I had with my health prior to the PI's being released.  I'm 43 and was diagnosed in 1991 with 6 t cells and cryptosporidiosis. It's been a long road.  I am now spleenless due to ITP (Idiopathic thrombocenic purpura) a platelet disorder. The surgery was done in 03. I'm doing well, I'm UN detectable and over 500 CD4,   Sometimes concentrating is hard, and following through with tasks.headaches, blah yada blah, I try to focus on the good and  not the bad.  I am happy, grateful and do not feel any guilt about being alive, although I miss my Friends dearly. I'm glad to be alive and take each day as it comes. I have taken comfort in becoming grateful for every single good thing in my life, no matter how small. I feel truly blessed. JeffreyM
Title: Re: Long term survivors under 50 where do they fit in?
Post by: JeffreyM on August 13, 2007, 05:05:47 am
Does anyone still talk of Lazarus Syndrome? 

Hello Mr. tuggem

A therapist informed me of Lazarus Syndrome in the late 90's and she said I had it.  I did a lot of talking about my feelings and was able to get past it. I have heard others talk of survivors guilt, I think it's the same thing.  Along with guilt, I had to banish, regret, resentment, fear  and a lot of other negative emotions to be able to stay  strong to move ahead. JeffreyM
Title: Re: Long term survivors under 50 where do they fit in?
Post by: hudstar on August 13, 2007, 07:23:27 am
Hey JeffreyM, it's interesting you talk about being diagnosed with Lazarus Syndrome. I kind of went the other way when diagnosed with Seasonal Affective Disorder. For years I felt the seasons affect me physically and to my mind saw it as some kind of pagan gift and that nature spoke to me - i was kind of embarrassed to mention it until my condition was actually diagnosed. In short I go into hibernation like an animal does during winter, my body shuts down physically, I lose my appetite and sleep for long hours- whereas in spring and summer I am abnormally active. Its some kind of genetic condition not usually found in people but found in most animals!  It's ironic how those feelings of being gifted kept my spirits up during the bad times and I accept the diagnosis at the loss of what i saw as special. It is good you had your diagnosis to better understand yourself and that can only be good.
Title: Re: Long term survivors under 50 where do they fit in?
Post by: tuggem on August 13, 2007, 09:10:39 am
Nice to hear some validation of Lazarus Syndrome.  I went through several years (and still have some aspects now) of identity loss (I identified with my job which end abruptly with disability) and the need to redefine myself.  With therapy, I got through the time, but it was when I was encouraged to write by Jamie Catto of 1 Giant Leap (http://www.1giantleap.tv) and Roger Humes of The Other Voices Poetry International Project (http://www.othervoicespoetry.org) that I really began to find myself and my voice again.  It took the sense of contributing something toward some kind of legacy to bring me out of the syndrome.

However, I still find the syndrome involves something akin to survivor guilt or Post-traumatic stress disorder.  As I have seen posted here before (sadly, I cannot remember who said it, but...), those of us who lived through the worst of this illness were forever changed by the deaths of our friends and the images of decimation by HIV/AIDS.  It is difficult for us to move on from that to see ourselves as heading toward manageable disease rather than death.  Newly infected people seem to have an easier time with this, in addition to not having to experience some of the harsher drugs that we took in the early 1990s.

I am very glad to see a dialogue about this topic.   Thank you for posting.

Ron
Title: Re: Long term survivors under 50 where do they fit in?
Post by: redhotmuslbear on August 13, 2007, 10:49:12 am
However, I still find the syndrome involves something akin to survivor guilt or Post-traumatic stress disorder.  As I have seen posted here before (sadly, I cannot remember who said it, but...), those of us who lived through the worst of this illness were forever changed by the deaths of our friends and the images of decimation by HIV/AIDS.  It is difficult for us to move on from that to see ourselves as heading toward manageable disease rather than death.  Newly infected people seem to have an easier time with this, in addition to not having to experience some of the harsher drugs that we took in the early 1990s.


I believe that we're getting distinct phenomena -- "Lazarus syndrome" and "survivor's guilt" and PTSD -- confused because they occur simultaneously for many long-term survivors.  "Lazarus syndrome" has historically been related to believing death is near, forsaking all future plans (and racking up a heavy load of debt), then finding that a "full an natural" lifespan is ahead.  I dealt with Lazarus Syndrome lbefore HIV, thanks to my neurosurgical history, though I have not experienced it with regard to HIV-related illness. 

From the National Institute for Mental Health:  "Post-traumatic stress disorder (PTSD) develops after a terrifying ordeal that involved physical harm or the threat of physical harm. The person who develops PTSD may have been the one who was harmed, the harm may have happened to a loved one, or the person may have witnessed a harmful event that happened to loved ones or strangers. "  Related to HIV and the early days of AIDS, there are far more non-HIVers than HIVers living with PTSD as a result of our losses.  "Survivor's guilt" is one aspect of PTSD.  Being a survivor of family and partner violence, I got an extra helping of PTSD from the 80s and early 90s!  Woo hoo!

http://www.nimh.nih.gov/publicat/NIMHreliving.pdf (http://www.nimh.nih.gov/publicat/NIMHreliving.pdf)

I'm not meaning to nit-pick, but using inaccurate terms can be as dangerous for us psychologically as the damned virus is to us physically.

Peace,
David
Title: Re: Long term survivors under 50 where do they fit in?
Post by: Miss Philicia on August 13, 2007, 10:59:05 am
Well said David.  I agree that there are basically three mental components, yet for many they overlap and merge.  It's probably a good idea, however, to be able to discern each component.  Only by understanding what is going on in one's head can one begin any sort of healing.

Anyone having major issues with these should, of course, potentially consider indulging in some therapy sessions even if only short term.
Title: Re: Long term survivors under 50 where do they fit in?
Post by: tuggem on August 13, 2007, 02:10:38 pm
Interesting.  I wasn't aware that heavy debt, in and of itself, figured into the definition of Lazarus Syndrome.   (Thank goodness I didn't order every credit card I could as some of my friends once did.)  I thought, instead, that the syndrome was defined by recognition of one's impending death, the so-called "burning of bridges", such as leaving work or coming out to everyone you know as gay and/or poz when you no longer give a flip how they react, and then finding health again.  The key issue, I thought, was how to redefine your life once you have been through the act of preparing for death and death does not ultimately come.  I have heard the syndrome referenced as similar the experiences of Holocaust survivors, both being defined by trauma and post-trauma survivorship.

Yes, I agree, PTSD, survivor guilt and Lazarus syndrome are all independent entities that often overlap and psychotherapy is very helpful in dealing with all of these issues.  I was lucky to get both psychotherapy and mentorship by people who encouraged me to move on.
Title: Re: Long term survivors under 50 where do they fit in?
Post by: redhotmuslbear on August 13, 2007, 02:37:32 pm
Interesting.  I wasn't aware that heavy debt, in and of itself, figured into the definition of Lazarus Syndrome. 

Debt accumulation isn't a "requirement," though it is often seen among people who believe that if death is imminent, why not let someone else pay the bills?  I know several men here who went quite lavishly into the throes of death on maxed-out credit cards, only to have protease inhibitors save them and force them into personal bankruptcy.
Title: Re: Long term survivors under 50 where do they fit in?
Post by: Miss Philicia on August 13, 2007, 03:10:20 pm
::raises hand::
Title: Re: Long term survivors under 50 where do they fit in?
Post by: AlanBama on August 13, 2007, 03:47:36 pm
:raises hand also:

 ;)