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Author Topic: Dead Man Walking  (Read 1367 times)

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Offline wow1969

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  • Posts: 208
Dead Man Walking
« on: October 07, 2009, 07:49:04 PM »
Evening everyone,

July of 2008 I tested poz ... i know by whom and when i was infected and converted around November 2007 ... so it's new to my body and to my mind ...

At first I was so busy I couldn't really focus on this so I just got through it ... then, when my life slowed down, I could have the melt down  which came but it wasn't as dramatic as i thought it would be

After about 6 months, the daily thoughts of HIV went away ... I hardly thought about it ... even my dr said that i had made peace with HIV and was doing great

Then about 6 weeks ago ... it crept back into my mind ... I can't shake the thoughts ... "my life is over" ... "i have no future" ... "what is the point?" ... i feel like the color has gone out of the world ... no matter what i do, i'm never getting away from this ... i can't change jobs easily like i could before for insurance reasons ... going back to school will be difficult ... moving would be difficult .. heck, international travel is an issue ... all of a sudden it has hit me that my life isn't as free as it once was, my choices are limited ... i feel trapped or stuck or immobilized

i have wanted to change careers for a while now ... the plan was to go back to school but now i keep thinking that is kind of pointless ... people tell me it's not a death sentence but that isn't enough ... it's not enough just to escape death we have to have hope for the future and i can't see my future anylonger

i was doing so well with this six months ago ... why is it that i'm all of a sudden fixated on my virally enhanced nature? 

the realization that this is never going to end ... that it never goes away .. that it is affecting every aspect of my life ... this realization is truly turning my life upside down ... there is no escaping

As i was writing this it occurred to me that I'm like a "Dead Man Walking" ...

sorry if it seems like i'm venting ... i guess i am ... to be honest, i'm not entirely sure what i'm doing ...

Offline Dale Parker

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  • Posts: 266
Re: Dead Man Walking
« Reply #1 on: October 07, 2009, 11:03:57 PM »
Hey Wow: Once you slow down questions like you have do come up as you didn't have time to think of them before. Although you have HIV life is far from over. True it's not going to be the walk in the park that it used to be but all the things you mentioned are still very possible.  
  Like you the "finality" of the disease hit me about 4 months after I was diagnosed. I love to take photographs. I'm pretty good at it but I'm no Ansel Adams by a long shot. I was talking to a friend about going out taking photos and I suddenly thought "Why the hell am I bothering? In a few years from now I'll be dead and no one will want them." Then I thought "I love taking photos so why stop?"
   I use my diagnoses as a very real reminder that life is not an indefinite thing. Prior to diagnoses things were always "next year" which usually turned into "in a few years".  I know that with meds I have very good chance, at the moment, of living for at least 20 years. With the advancement of meds chances are I will die of old age rather than of aids.
    On the papers the doctor gave me for subsidized housing he put down a "life expectancy of less than 2 years". I don't believe that will be true. I use his prognosis to make me get off my ass and do the things that I have been putting off for years. For all I know the doctor may be right about the two years. If he is I will have a lot of the things that I wanted to do before I die done. I would rather die after getting only half my list of things done than be sitting around 20 years from now thinking that I should have done those things when I had the chance.
  
Apr 09  CD4 21, CD4/CD8 ratio 0 VL 500,000+
July 09 CD4 158, CD4/CD812% VL 750
Oct 09 CD4 157 CD4/CD8 14% VL UD
Feb 10 CD4 197, CD4/CD8 11% VL UD
May 10  CD4 252 CD4/CD8 12% VL UD
Aug 10 CD4 211 VL UD
Nov 10 CD4 272 CD4/CD8 0.138 VL UD

Offline Inchlingblue

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Re: Dead Man Walking
« Reply #2 on: October 08, 2009, 01:09:46 AM »
.. i can't change jobs easily like i could before for insurance reasons ... going back to school will be difficult ... moving would be difficult .. heck, international travel is an issue ... all of a sudden it has hit me that my life isn't as free as it once was, my choices are limited ... i feel trapped or stuck or immobilized

i have wanted to change careers for a while now ... the plan was to go back to school but now i keep thinking that is kind of pointless ... people tell me it's not a death sentence but that isn't enough ... it's not enough just to escape death we have to have hope for the future and i can't see my future anylonger
 

I feel the exact same way, I suppose we just have to "get over it." Sometimes I'm fine with all of it but then I start thinking how the "degree of difficulty" for my life has gone up, like with Olympic dives. I can't just change jobs and go without coverage for a while if need be, it's just not possible to be so nonchalant. I can't just pack up and move, as I want to do, it's just not that easy any more.

In countries with Universal health care it's a lot easier for people with HIV to have more normal lives, change jobs, move, etc., without having to worry about accessing meds and health care.

I'm taking it one day at a time and hoping that treatment will continue to improve to the extent that meds may not be necessary every day and it will be easier to handle this disease. Also hoping that health care access improves.

I know we have it so much better than those who came before us but I can't help it if I want things to be  better still.

Offline skeebo1969

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  • Posts: 5,702
Re: Dead Man Walking
« Reply #3 on: October 08, 2009, 01:25:23 AM »



  With the advances in treatment and the medicines available to those newly diagnosed, your life may be altered a bit, but in no way is it hopeless.  It's kind of like a life long plane ride.  Yep it may crash one day, but you'll miss a lot of beautiful sunrises and sunsets if you worry about it all the time.

 

   
I despise the song Love is in the Air, you should too.

Offline wow1969

  • Member
  • Posts: 208
Re: Dead Man Walking
« Reply #4 on: October 08, 2009, 05:55:39 PM »
thank you to everyone who has responded so far ... my concerns are still there and i believe they won't go away soon or easily ... i will say that it's a relief to see people saying they feel the same way ... i get so tired of people telling me it will be ok, that it's not he end of the world, that i'm going to live when the truth is, HIV has changed so much in my life ...

i know that when people say that they mean to be supportive but it's almost like a form of denial ... i guess the realizations that i'm currently having are the last bit of denial leaving me ...

Inchlingblue, thank you in particular ... one of my biggest fears is becoming destitute ... with the USA health care system that is a very real possibility ... another big fear is losing my dignity along the way ... i suspect you have similiar concerns so thank you for your response ...

skeebo1969 .. LOVE IT ... the analogy struck a funny bone with me :-)

dale ... i like the attitude that you use to remind you life isn't indefinite ... that requires thought and digestion on my part but it's an excellent way to view this ...

hope everyone has a wonderful day :-)

Offline BT65

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  • Member
  • Posts: 9,904
Re: Dead Man Walking
« Reply #5 on: October 08, 2009, 06:43:01 PM »
Wow, sometimes I have to read posts like yours to remind myself, that people still feel the same way as I did when I tested poz 20 years ago.  I tend to think that today, no one should be depressed, because of all the new meds.  And I fail to realize the whole humanness of the situation.  Of course you're going to be depressed, upset, worried, speculating etc. 

For me, a support system was, and is, extremely important.  And coming to grip with dying; but today, I know it's going to be "someday," not necessarily tomorrow.  Things aren't as desperate now as things have been in the past.  And it's because of the newer medications.  I choose to live without being paranoid all the time, about what everyone else thinks, what is this spot, why am I sweating (do I have a high fever), etc.   I don't want to fill my time with all negative.  I still get down sometimes.  I wish I would have been able to have kept on working full time, with insurance, and a "normal" life.  But, I've met so many beautiful people because of this damn disease.  I don't like having it one bit, but I don't regret anyone I've met who's been in the same boat.   There have been more funerals than had I stayed negative.  But, the friendships are everlasting. 

So, let me stop rambling.  Of course it's normal to feel what you're feeling.  Just know that, I guess (it's normal).
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Inchlingblue

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Re: Dead Man Walking
« Reply #6 on: October 10, 2009, 02:42:03 AM »
I was reading the piece in the New York Times profiling Sean Strub. It gave me some context, I found it inspiring.

As I now try to navigate my life with this added burden of HIV it's so impressive to me how someone like Sean Strub survived but barely and has since seemed to thrive, busying himself with various projects, essentially moving on with grace and dignity. And I know there are many others out there, many in these very forums.

Reading it reminded me of this thread, so I'm sharing it here.

from the article:

In 1994, he started POZ, a magazine for the H.I.V.-positive. The idea was to give people hard facts, but realistic hope, although by 1995, his appeared to be running out. He normally was thin — 6-foot-1, 156 pounds — but by then weighed 124. The Kaposi’s sarcoma lesions, which started on his body in 1994, spread to his neck, face and, by 1995, his lungs, making him a “90-9” club member: 90 percent died within 9 months. That year, 51,373 Americans died of AIDS, the epidemic’s high point, according to the federal Centers for Disease Control and Prevention.

And then in January 1996, protease inhibitors that stopped H.I.V. from replicating were approved by the Food and Drug Administration; Mr. Strub started on a daily dose of 16 pills
.

LINK:

http://www.nytimes.com/2009/10/11/fashion/11genb.html?_r=1

Offline tommy246

  • member
  • Member
  • Posts: 435
Re: Dead Man Walking
« Reply #7 on: October 10, 2009, 12:09:57 PM »
Ive been pos a year nearly and settling down a bit but still have" what if "days,you know blaming ones self for getting infected etc, what if meds dont work for me and general  negative thoughts ,i think time helps as for me i thought about hiv 24/7,but now go whole days without thinking about it ,i look and focus on positives.
jan 06 neg
dec 08 pos cd4 505 ,16%, 1,500vl
april 09 cd4 635 ,16%,60,000
july 09 ,cd4 545,17%,80,000
aug 09,hosptal 18days pneumonia cd190,225,000,15%
1 week later cd4 415 20%
nov 09 cd4 591 ,vl 59,000,14%,started atripla
dec 09  cd4 787, vl 266, 16%
march 2010  cd4 720 vl non detectable -20  20%
june 2010  cd4  680, 21%, ND

Offline wow1969

  • Member
  • Posts: 208
Re: Dead Man Walking
« Reply #8 on: October 10, 2009, 07:28:02 PM »
i want to say thank you to everyone who posted a comment ... as i stated i wasn't sure what i was doing or why i was posting ... after six or seven weeks of having this bounce around in my head and then listening to the repetitive thoughts i've discovered some things ... those discoveries are going to be in a new thread ... the title for this one doesn't fit with the new information

again thank you to everyone ... the continuiation of this thread will be posted under "Fame ... I"m gonna live forever"

 


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