POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: phillypinko on July 24, 2012, 06:50:05 pm
-
I tested positive when i was 20 years old in 1992.In those days it was pretty much a death sentence.My first t cell count was 300.I was told I had 5-7 years to live.I made a decision that at the time was a logical conclusion.Drop out of school forget about a career and live like whatever amount of time i had left was my retirement.Well a couple years ago my doctor told me i will die like everyone else but it will not be from aids......So now what?...i feel completely f****d...im 40 years old....what am i going to do for the next 30-40 years?....anyone else going through anything like this?....i never thought surviving would be a bad thing but here i am an aging hiv positive playboy who has spent the last 20 years travelling,playing softball,playing chess,going to the beach and to the gym....now what do i do?....20 year old playboys are cute....even 30 year old playboys are cute....but 40?....50?...60 year old playboys are not thought of as cute they are thought of as bums.
-
Forgive me if I seem less than sympathetic. This is what we all hoped would happen someday. That.... life with HIV is extended to a (sort of) normal span.
Picture it: 1989. Been there. I figured I'd be dead by 1995. Not to happen.
I think a counselor is in order to help you sort out what you want to do with the rest of your life.
Good luck
-
I tested positive when i was 20 years old in 1992.In those days it was pretty much a death sentence.My first t cell count was 300.I was told I had 5-7 years to live.I made a decision that at the time was a logical conclusion.Drop out of school forget about a career and live like whatever amount of time i had left was my retirement.Well a couple years ago my doctor told me i will die like everyone else but it will not be from aids......So now what?...i feel completely f****d...im 40 years old....what am i going to do for the next 30-40 years?....anyone else going through anything like this?....i never thought surviving would be a bad thing but here i am an aging hiv positive playboy who has spent the last 20 years travelling,playing softball,playing chess,going to the beach and to the gym....now what do i do?....20 year old playboys are cute....even 30 year old playboys are cute....but 40?....50?...60 year old playboys are not thought of as cute they are thought of as bums.
Many of my friends who have passed away from AIDS would love to have the problem you are having. You're right that, back then, many of us were told we only had a few years to live. And then each of us made choices on how we were going to live our lives. You should be thankful you have a second chance -- and that you have had 20 great years of partying.
It's time to do some serious thinking -- and taking action -- on what you want to do with the rest of your life. Sounds like your priorities are changing, which is perfectly natural as we get older. As Bear says, a therapist would be invaluable in helping you sort this all out.
Regards,
Henry
-
OK, here is a little tough-love for ya! so keep up and follow along......
here is what your gonna do for the next 20, to 30 yrs.
LIVE dang-nab-it, Live your life the best you can..
Thanks for listening & hang-in-there...
Hugs
DEN :D
-
Go back to school if you want.
Volunteer in the community.
Work out and stay fit.
That 20 year old you isn't coming back. Stop insulting the 40 year old you are now by mourning him.
If you have a roof over your head, a way to get places, some friends, and food in the fridge you are off to a good start.
Instead of looking for happiness, try to be happy.
Just some of the stuff that works for me.
-
Sounds like you lived pretty well the past twenty years. In between being a playboy you didn't notice the advances being made in HIV treatment, and your doc only dropped that bombshell on you a couple of years ago? What you do for the next couple of decades, like you lived the last two, is up to you.
-
Well welcome first thing, I think most off us have had difficulties with planning and life choices , I did not plan to have a crumbling skeleton , wheezing lungs and fiances resembling Greece. However without a doubt it would be really really funny if I live to 70.
I would imagine that all play people might have a problem with turning 40 , you do have choices one off them is to just keep on perfecting what you do or not . That's the point off choices, please don,t waste yours what ever they are
Michael
-
Welcome. Don't throw in the towel buddy. I've been positive since 1987 and they didn't think I'd live past 1995. But, as it turned out my 40's were some of my best years, in a great relationship, moved to Hawaii, did alot I ever wanted to do while I was still relatively healthy. Do it now if you can is my advice. Also, I've been in therapy for a long time, and couldn't get by without it. I think a good therapist will help you deal with this immensely. My only suggestion is to be sure the counselor or therapist has experience dealing and treating patients with chronic illness's llike ourselves should you decide to got that route.
You'll be o.k.!
Best,
Jeff
-
Picture it; rural Ohio, mid 80's and a young man, 21 years old testing positive for a death sentence. He chose to accomplish a lot of his dreams, dragging ass, fighting and fiercely believing and having faith that he'd be alive at least another decade. Nothing really known about a mysterious disease that was killing us. (Sorry, just watched an episode of "Golden Girls".)
You were initially justified with your reactions, but to blame this virus for your current woes is a bit disingenuous. If not this virus, what else would have been the pitfalls of life? It's a slap in the face to many members here who thrived in spite of this virus.
Modified because I also realized Bear used the picture it scenario....:)
Now go figure out what you need to be fulfilled. We can't provide you with that information. Sorry for sounding so harsh, but my first reaction to your post was "REALLY"?
Had this been posted in the "living with" forum, I'd have overlooked it. But to come here and whine just doesn't sit well with me.
I truly hope you figure this out and take our comments and reactions as constructive advice.
Wolfie
-
I truly hope you figure this out and take our comments and reactions as constructive advice.
Wolfie
I agree, come back and talk with us , what are your plans? what do you dream off ?
Enquiring minds gather here don't waste the opportunity.
michael
-
...you didn't notice the advances being made in HIV treatment, and your doc only dropped that bombshell on you a couple of years ago?
The problem is that they keep incrementally adjusting the time table for life expectancy... at first you're told in the early 90's you've got maybe five years to live, then a couple years later you start hearing about long term survivors who made it past 10 years, then this new "cocktail" comes out and your doctor's saying you might actually make it to 15 years, then you start hearing about 20 year survivors...
There's never been one big giant leap in life expectancy substantial enough in length for many of us to realistically feel that we had a future to start planning for. We've been riding the crest of one long "wait & see" wave of contingency. Even now, and I hate to sound morbid or pessimistic, the model being used that predicts a fairly normal 70+ year life span is for the young and recently infected.
The only thing I know for certain is that without my meds and access to adequate health care, I wouldn't live to see another five years... and that's what scares the bejeezuz out of me. I went through the same "I feel like a worthless bum" crisis the OP is describing, and I'm currently back in school, but I'm deathly afraid that I'm making the biggest mistake of my life giving up guaranteed access to treatment for an uncertain future just so I can feel better about myself...
-
There's never been one big giant leap in life expectancy substantial enough in length for many of us to realistically feel that we had a future to start planning for.
You're kidding right?
-
Try knitting...
-
Dear Phillypinko,
I'm glad you are with us and glad you recognise an urgency to start to plan and make changes for the future.
Many of us have fears for the future, that's part of being self-aware in a situation that is outside of 'the dream' the marketers try to sell us. Probably 90% of the population don't get 'the dream' trajectory in life. It's not just people living with HIV. Unfortunately there are no medals for 'it's all too hard'. We have to make our own future no matter how uncertain that may be.
I'm not sure what your options are ( I'm living in another country), but for me a part of keeping a sense of control is studying a vocational course at my local Institute of Technology (Community College?). I'm not sure it will lead directly to a job, but in the interim; I'm out of the house, I'm focused on goals and I'm meeting people from a range of backgrounds. I'm getting a lot of emotional support and encouragement from folks around me that is new since my studies commenced.
You have a lot of positives, the chess, softball, gym... these show you are connected, bright, and motivated. These attributes are positive. You can harness these attributes. Go for it and never be afraid to ask for support when you start new challenges.
Good Luck
-
Do what you enjoy and as long as you can keep a roof over your head and food to eat your doing better than a lot of people these days. No one knows what tomorrow will bring. Life is like the lottery, you have one in a 80 million chance of winning but people keep on trying.
-
You're kidding right?
What I'm saying that it has been through a series of advances over the years that we've slowly gotten to the point we are at now... there was no one defining moment where my doctor turned to me and said you've got another 20 or 30 years to live. It always seemed to come in five or ten year reprieves as our understanding of the disease evolved and as new drugs and treatments became available.
The responses to phillypinko just seemed to be blaming him for not having the foresight to know twenty years ago that he'd still be alive today, and that's not really a fair assessment of the situation. Many LTS are finding themselves in the exact same predicament, not being prepared for a future they never thought they'd live to see. It's "The Ant & the Grasshopper" only the grasshopper didn't prepare for winter because he thought he'd be dead by fall.
Anyway, it'd be nice to be able to discuss the matter without all the "just be glad you're still alive and stfu" type responses that seem to be the typical response to posts like his.
-
The responses to phillypinko just seemed to be blaming him for not having the foresight to know twenty years ago that he'd still be alive today
Now who's putting words into people's mouths? Why I can remember thinking twenty years ago if I can just shake yet another OI and get out of the hospital and attend another friend's funeral I can start planning my rosy future. You think the majority of us don't deal with the post traumatic emotional and physical after effects of that black decade? Most of us didn't live the life of a "playboy" for twenty years. We lost friends and lovers, careers and livelihoods. We lived lives with no future. But something funny happened on the way to the funeral home, we just wouldn't die. I'm only speaking for myself. I look back with unspeakable sadness and forward with guarded hope, because at the end of the day, it is what it is.
-
Anyway, it'd be nice to be able to discuss the matter without all the "just be glad you're still alive and stfu" type responses that seem to be the typical response to posts like his.
5 years after his infection, HAART treatments became available that gave us all HOPE that a normal life expectancy could be achieved. He lived the next 15 years recklessly and then blames it on HIV.
Most of us LTS weren't afforded the opportunity or health to live like jetsetting playboys for 20 years and then complain that we did so. We can partially understand the mindset, but we were are also urging him to come to grips with reality and focus on the future.
So, unless he only wants to be coddled he has to accept both sides of this discussion.
Wolfie
-
Try knitting...
Thank you for reminding me the Peter promised to teach me.
m
-
I hit 25 yrs this year. Like phillypinko I quit school when I got diagnosed. I was carrying a 3.8 or so in Computer Science and quitting broke my heart. I've lost a husband to AIDS and another to oxycontin. And frankly, I'm surprised at some of the responses phillypinko has gotten.
As Dorothy rebuked the Wizard, "And he came to you for help!"
I realize that we've all had our challenges, I don't think any of us have had it easy. But for gosh sake, if we can't have sympathy for another LTS, who will? OK, so he's just waking up to the reality that he wasted all those years wondering when his number would be up. I can relate, I spent many years lost in a drug-induced haze after my first hubby died. I ran, as far and as fast as my legs would carry me, from the horror that my life had become.
I didn't pay off my student loans, and now that I'm sober, they're dunning me for $25 grand. So I owe all that money and have an unfinished education. To say that AIDS wrecked my life is an understatement.
Phillypinko, if you're reading this: I understand your problems. Someone suggested counselling, and it's not a bad idea. I found it necessary twice in my life, both times after losing a husband. Reach out to anyone that you can, begin to look at your options. Are you working now? What's your education look like? No matter at what point you find yourself, there are options for taking control of the rudder and steering your life back toward where you want it to be. It won't be easy. And to be honest, you might die before you get there. But it's better to die trying than to do nothing. If I've learned nothing else, I've learned that.
Good luck. Let us know how it's going.
-
I hit 25 yrs this year. Like phillypinko I quit school when I got diagnosed. I was carrying a 3.8 or so in Computer Science and quitting broke my heart. I've lost a husband to AIDS and another to oxycontin. And frankly, I'm surprised at some of the responses phillypinko has gotten.
As Dorothy rebuked the Wizard, "And he came to you for help!"
I realize that we've all had our challenges, I don't think any of us have had it easy. But for gosh sake, if we can't have sympathy for another LTS, who will? OK, so he's just waking up to the reality that he wasted all those years wondering when his number would be up. I can relate, I spent many years lost in a drug-induced haze after my first hubby died. I ran, as far and as fast as my legs would carry me, from the horror that my life had become.
I didn't pay off my student loans, and now that I'm sober, they're dunning me for $25 grand. So I owe all that money and have an unfinished education. To say that AIDS wrecked my life is an understatement.
Phillypinko, if you're reading this: I understand your problems. Someone suggested counselling, and it's not a bad idea. I found it necessary twice in my life, both times after losing a husband. Reach out to anyone that you can, begin to look at your options. Are you working now? What's your education look like? No matter at what point you find yourself, there are options for taking control of the rudder and steering your life back toward where you want it to be. It won't be easy. And to be honest, you might die before you get there. But it's better to die trying than to do nothing. If I've learned nothing else, I've learned that.
Good luck. Let us know how it's going.
I think what irked most LTS was his description of how he lived the past twenty years. At forty he still has plenty of time to move forward and I wish him well.
-
You live and be thankfull for being alive..
hell dude u might even fall in love like i have :) v(never been in love before so @ 44 this is weird to me)
you dance you sing you go walkin in summer rain and you make the most of what you have