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Author Topic: Not gonna die after all...  (Read 3665 times)

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Offline buttondwn

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  • Posts: 5
Not gonna die after all...
« on: May 29, 2009, 11:44:28 AM »
I consider myself a long-term survivor because I've been living with HIV since 1994.  However, living doesn't mean I was dealing with it, quite the contrary.  I ignored it for 14 years til the walls came crashing down on me and I was in the hospital with a variety of OI's.  My CD4 count was as low as 50 and my viral load was through the roof at 3.7 million.  I left the hospital and went home to my parents house, thinking my own death was imminent.  The thing is, I didn't die.  I've bounced back fairly well in fact and my doctor says it's a miracle. 

I didn't have to sell a house, give away plants, or find new homes for my pets - but I did stop working, I've gone on SS disability, and I'm still living at my parents home (parents who are SO incredible, they deserve a page to themselves).  I guess I didn't see any point in worrying about my future because I didn't anticipate having one.  The "problem" is that I DO have a future - I've given up a lot of "me" and according to some friends, even regressed, letting my life slide.  I've been sitting back, waiting for something to come my way.  I feel like my life is like a train that went off the rails.  I know I can get it back on track again but I just don't know how.

I'm seeing a therapist but I would really like some input from peers and I'm not getting that kind of help from local support groups or ASO's - I know that there are thousands of long-term survivors who gave away their cats & dogs only to have to ask for them back.  How do I deal with this?  Is there another forum I should be going to?

I appreciate your thoughts & suggestions.
10/1994  Diagnosed HIV+
10/1994  Proceeded to bury head in the sand
09/2008  Admitted to hospital for two weeks with PCP, CMV, & a host of other OI's.
09/2008  CD4= 65 (7%), VL= 3.7 million
10/2008  CD4= 50 (6%), VL= 2.5 million
11/2008  Started HAART: Truvada, Reyataz, Norvir
12/2008  CD4= 287 (27%), VL= 3760
02/2009  CD4= 321 (30%), VL= 822
05/2009  CD4= 211 (16%), VL=274
06/2009  CD4= 268 (19%)

Offline BT65

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  • Posts: 10,785
Re: Not gonna die after all...
« Reply #1 on: May 29, 2009, 11:56:52 AM »
Sean, from what I gather, you're wanting to know what to do with the rest of your life?  What do you want to do?  You're on the right track seeing a therapist.  They can help us form a plan and take some action. 

I know exactly how you feel.  Some years ago, I didn't think I'd ever do anything with my life again, other than just exist.  I got tattoos on each hand, and that's something I really regret.  They're not insulting or anything, but when people meet me, that's the first thing they look at.  Had I known I would actually be doing something agian, I never would have gotten them. Oh well, live and learn.

You need to figure out what it is you would like to do.  Maybe there's something you're good at that you could volunteer in somewhere.  That may be a place to start.     Anyway, welcome.  I hope to hear more from you.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

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Offline bear60

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  • Posts: 4,105
Re: Not gonna die after all...
« Reply #2 on: May 29, 2009, 12:03:14 PM »
I agree with Betty.  If you feel as though your life is like a train off the tracks....getting the train back on the tracks means its going somewhere....where was it you wanted to go back in 1994?  Maybe a new direction is necessary, you know.
Good luck and hope to hear more from you.

Poz Bear Type in Philadelphia

Offline aztecan

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  • Posts: 5,517
  • 32 years positive, 60 years a pain in the butt
Re: Not gonna die after all...
« Reply #3 on: May 29, 2009, 11:53:41 PM »
Hey Sean,

Welcome to the forums. especially the LTS forum.

You and I have been through the same thing, but in a sorta different way.

For the first decade after I tested positive, I believed I would never live to see 40. I believed it because that was what everyone told me.

In 1985, when I tested positive, the doctor rather bluntly told me to start making plans for my death because I only had about two years left.

In 1992, when a friend finally talked me into seeing a doctor, the first person I saw was a nurse who told me to "pack on those pounds so you will have something to fight with when the time comes."

So, I didn't care that I maxed out my credit cards, etc. I wouldn't be around to pay them off, so who cared? I didn't care that I didn't have a retirement planned, or any money set aside for my "golden years." Hell, I was in my "golden years," or as golden as I thought they would get.

Well, then along came the triple drug cocktails in 1996. After 11 years of being positive, someone actually told me I might not die as soon as I thought because of new miracle drug combos that included a brand new class of drug call protease inhibitors.

Well, the rest is history. I have now been positive nearly 24 years, been on meds for 13.

You ask how do you get yourself back on track.  Well, Betty was right about deciding what it is you would like to do with your life.

Basically Sean, the world is your oyster, so to speak. But, if you are like me, there may be things you have to "repair" before you set about living your dreams.

I had to pay off those credit cards. My credit has now recovered and I managed to buy a house all by myself.

What is it you would like to do? Once you've answered that question, then the next step will be to find a way to make it happen.

So, what would you like to see in your future?

I look forward to hearing more from you.



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

Offline AndyArrow

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  • Posts: 1,196
Re: Not gonna die after all...
« Reply #4 on: June 01, 2009, 04:14:56 AM »
Welcome to the forums Sean,

It's a hard adjustment to go from fighting for your life to learning how to live again. 

As the others have said now is the time to decide what you want to do now that you've been given this second chance (so to speak).  You'll need to decide if you want to try to go back into the work force or go back to school or volunteer or a combination.

The fact that your parents have taken you in and helped you through all this shows how much they care for you.  Living with them might be the best thing for you, but if you feel that you have lost part of you not only from being so sick but also from becoming their little boy again then you might want to find out if there is any housing assistance where you live so you can find a place of your own.

Also, keep in mind that it took you 14 years to start dealing with HIV so you don't have to make any life changing decisions tomorrow.

Good luck and hopefully we'll hear a lot more from you,
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline Pozinmaine

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  • Posts: 15
Re: Not gonna die after all...
« Reply #5 on: June 14, 2009, 10:10:11 AM »
Dear Sean,

Many of us can relate to your experience.  You are not alone!  It's really difficult sometimes to find a new beginning when you've had it set in your mind that you have reached the end.  Gold shines best when it's been through the fire...  All the best to you and yours!


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