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Author Topic: Living with HIV, are we really better off?  (Read 3418 times)

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Offline rayvjr

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    • Just Tested Positive.Com
Living with HIV, are we really better off?
« on: December 03, 2006, 02:11:49 AM »
I don't know if it just me being down these past few weeks, or if maybe there is something too it.  It seems that life with HIV can be very lonely.  So I ask myself, when the time comes, should I take the medicines or just let nature take its course?  Is living with HIV really worth living?  Sometimes, I think those who have passed before us had it better than us, they died quickly, without having to live with years of lonliness, stigma and pain.  I wonder...

Offline skeebo1969

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Re: Living with HIV, are we really better off?
« Reply #1 on: December 03, 2006, 02:14:37 AM »


     Dying from AIDS is not pretty my man!
I despise the song Love is in the Air, you should too.

Offline Eldon

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Re: Living with HIV, are we really better off?
« Reply #2 on: December 03, 2006, 02:19:46 AM »
Hey Ray...

There is a number of different ways that you can approach this question. Live your life and make the BEST of each Day.


Happy Holidays!

Offline skeebo1969

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Re: Living with HIV, are we really better off?
« Reply #3 on: December 03, 2006, 02:28:21 AM »


  Or Life is like a box of chocolates you never know what your gonna get ::)
I despise the song Love is in the Air, you should too.

Offline Basquo

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Re: Living with HIV, are we really better off?
« Reply #4 on: December 03, 2006, 02:36:55 AM »
So many people on this site are proof that it is worth living, especially if you can make a difference to someone.  Not just making a difference here, but anywhere you choose to reach out and communicate.  Which you are doing, right? Rock on!

Best to you Ray!
Creighton

Offline DanielMark

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Re: Living with HIV, are we really better off?
« Reply #5 on: December 03, 2006, 06:12:58 AM »
You got that right, Creighton!

The best remedy for the blues that I've found is to reach out or get out and help someone else. Shift the focus. The world is filled with needs beyond our own. In my experience, the best remedy for despair is to love through action. In doing so, it will come back to you in unexpected ways, probably when you least expect it.

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline gvolts5

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Re: Living with HIV, are we really better off?
« Reply #6 on: December 03, 2006, 08:00:03 AM »
Ray,

I was just wondering about that recently myself.  People function best when they have a choice.  If a person is forced into something (e.g. taking meds) they are probably going to rebel on some level.  If a person chooses not to take meds I think society makes them feel like they are "bad" or "pessimistic" or something like that.  Everytime I was hauled off to the emergency room when some OI attacked, they'd probably try to convince me to get on the meds.  Hence, I'd feel like I have to take meds otherwise I might feel like society thought I was "giving up" or not being "hopeful". 

I've tried to imagine how I'd feel if I really had a choice; take meds and receive clinical treatments to sustain my life, or not take meds and receive clicinical treatment to end it.  Even up the choices totally.  Perhaps my reasons for ending my life might be something similar to a person who decides to give their life to go to Iraq as a soldier.   

In both cases I'd need to carefully consult with experts, get some raw data, facts, and figures; it's unlikely that I'd be able to decide between those two options objectively without careful guidance.

My point is that whatever choice I made would be my choice.  And that's going to have considerable impact on how I feel.  I'd be able to really get behind either choice fully and/or change courses if circumstances dictated it.  Maybe I'd feel like I was making more sense, maybe adhering to "stay alive at all costs" doesn't quite make sense to me. 

This is conceptual talk.  I'm not necessarily saying that offering clinical death as an option is a good idea.  Sounds morose doesn't it? 

Maybe I should have just said something hopeful instead of all that.

John





« Last Edit: December 03, 2006, 04:20:24 PM by gvolts5 »

Offline RapidRod

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Re: Living with HIV, are we really better off?
« Reply #7 on: December 03, 2006, 08:24:24 AM »
I'll fight this until my last breath. I'm in no hurry to give up. I've outlived all my friends that have succumbed to this disease and I'm not going without a fight. My life is worth living for.

Offline GSOgymrat

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Re: Living with HIV, are we really better off?
« Reply #8 on: December 03, 2006, 09:22:42 AM »
Are you sure your loneliness is a result of HIV? Maybe you would feel lonely even if you didn't have HIV to deal with.

Offline aztecan

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  • 29 years positive, 57 years a pain in the butt
Re: Living with HIV, are we really better off?
« Reply #9 on: December 03, 2006, 10:45:33 AM »
Our dear Gymrat, whose Halloween photo I miss dearly, has a point.

Would you be less lonely if your were negative?

Another question is, have you shut yourself off to others because of HIV?

In my own case, I can say, at first, shut myself off from others after becoming positive.

I also had periods of loneliness prior to becoming positive.

I learned that nobody can change that but me. I had to get out, meet folks, get involved. By doing so, I found I was no longer lonely and, although I didn't actually think about it at the time, I stopped building walls around myself.

Now, regarding just letting nature take its course - there is nothing natural about dying with AIDS.

It is ugly, It is painful and it can take a lot longer than you think. I have known people who lingered, and I mean that literally, for years, suffering the onslaughts of one opportunistic infection after another.

For myself, when my time came, I was thankful there was a treatment. (There weren't too many back then.)

I wasn't "forced" into treatment. I jumped in with both feet. I had seen the alternative and I was going to fight this damn bug tooth and nail until I had no more breath left in me. I have been a rebel of sorts all my life and this was my rebellion. I wasn't going to let some protein sack filled with reverse transcriptase dictate how I would live.

That was more than a decade ago. I don't regret one moment of it.

I think you must decide who you want to control your life. Do you want this virus to dictate how you will live, the status of your health, you ability to waken each morning and greet the new day?

It really is up to you.

HUGS,

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

Offline Longislander

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Re: Living with HIV, are we really better off?
« Reply #10 on: December 03, 2006, 10:45:41 AM »
Hi Ray,

First off, you have the best reason in the world to take meds a few days before they become necessary.

And think of this. There are sooo many people infected with HIV. Many, I'm guessing, are right here in NYC. But they're not members here, they're not on the HIV dating sites. I often wonder why that is, and the best I can come up with is that a great deal of them have gone on to live their everyday full lives. Of course, I'm sure there are many who are just to sick to bother.

But if healthy enough, HIV isn't stopping all these people from living. I know that I was lonely in the past 3 years, 2 without HIV.

If I had an answer to this, I'd share it with you.

Paul
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline Life

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  • Member 2005
Re: Living with HIV, are we really better off?
« Reply #11 on: December 03, 2006, 11:09:07 AM »
It won't be HIV that gets me in the end...  It will be my attitude or mindset that beats me down.. Vigilance!

Offline thunter34

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Re: Living with HIV, are we really better off?
« Reply #12 on: December 03, 2006, 11:32:30 AM »
I'm with RapidRod....There will be a line of claw marks all the way over to my little mound of earth.  I ain't giving up for nuthin'.  Besides, I know how my luck typically runs in such scenarios.  I can just see it now:  Me, having foregone meds, lying in the hospital gasping my last breaths, when suddenly...

              "This just in:  Researchers in such & such have reported that they have indeed found a cure for HIV,
                the virus that causes AIDS..."


                Me:  Huh??   (.....flatline....)

Besides, the importance of your survival- your continued living and attempting to thrive- extends beyond yourself.  It reaches to those around you.  The ones who love you & want you here...with them, on this earth.  And also to the ones who come into this same situation after you and look around for others for some model of hope.  We are indeed bigger than ourselves.
AIDS isn't for sissies.

Offline Iggy

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Re: Living with HIV, are we really better off?
« Reply #13 on: December 03, 2006, 11:41:15 AM »
.
« Last Edit: January 10, 2007, 09:09:08 PM by Iggy »

Offline Blixer

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Re: Living with HIV, are we really better off?
« Reply #14 on: December 03, 2006, 12:21:03 PM »
Ray, lots of good advice from the folks here.  And there is a lot of experience in "living" among them.  Life has it's ups and downs.  Being somewhat newly diagnosed I can identify with what you are talking about.  HIV tends to make you look at things differently and think about things differently.  But today's meds are much better than they used to be.  And life is still worth living.  You just have to find that focus that works for you.  I've dealt with a lot over the past 11 months since my diagnosis.  The lonliness can be there.  The "will anyone want me" thoughts are there.  The question of How will I live out my life, is there.  I'm just now starting to get back into the "dating" realm again and it hasn't been as bad as I had anticipated.  I'm much more cautious, I disclose up front, but I've found some very accepting people.  Now, I'm very cautious and I have tended to put up a wall I think.  But I do feel like there is a lot of hope.  Of course, I came to the conclusion some time ago that if I end up living out my life alone, so be it.  I'll find friends and make the best of it.  But if I find that companionship, then so much the better.  And it has made me much more discriminating.  I decided early on I was going to fight this disease with the best fight I had in me.  If it gets me in the end, it won't be because I didn't do everything possibly that I could.

You have a lot to offer Ray!  I know it gets gloomy sometimes, but from my conversations with you I know you are a smart guy with much to contribute to this world.  Find that niche that makes you feel more comfortable and go for it.

Take care!
David
Diagnosed 1/9/06
8/27/2007 CD4 598, 29%, VL 58 (72 wks)
11/19/2007 CD4 609, 30%, VL < 50 (84 wks)
2/11/2008 CD4 439, 27%, VL <50 (96 wks)
5/5/2008 CD4 535, 28%, VL <50 (108 wks)
10/20/2008 CD4 680, 28%, VL <50 (132 wks)
Changed to Atripla in 2012
1/14/2013 CD4 855, 35%, VL <40

Offline Buckmark

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Re: Living with HIV, are we really better off?
« Reply #15 on: December 03, 2006, 12:52:57 PM »
I can only speak from my experience here.  Life is full of challenges, HIV just being one of
them.  It is tempting to think that my life would be so wonderful if only I weren't positive.
However, I really don't believe that is the case.  And not that my life is so crappy, either.
But I believe it is deceptive (though tempting) to think that all my problems would go away
if I were negative again.  So why not try to make the best of life as it is right now.  Not
that doing so is easy -- but who ever said life would be easy?  Rewarding things often are
not easy.

Regards,

Henry
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline skeebo1969

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Re: Living with HIV, are we really better off?
« Reply #16 on: December 03, 2006, 01:04:30 PM »

  Sorry Ray for my one liners last night :-[   I find my attitude is slightly different in the morning.    I seem to be nice in the morning and an ass at night, but anyways this is about you.

  Ray what was your life like before becoming positive?  If I can remember correctly you were diagnosed a year ago, right?   Man let me tell you, my first year was rough!  My internal problems made the things I am going through now (ex and daughter issues)  look like a walk in the park.   I was such a mess that my therapist had the police come to my house and I was institutionalized because they thought I was a danger to myself.  That was last year December three months after my diagnosis...

   That was the day I realized...  it was me!   No one could do it for me.  I mean everyone here, my friends...  Everyone I knew would tell me and give their suggestions, but ultimately I was the one who had to make the changes necessary to want to live.   I'm not saying you want to die, but what I am saying me wanting to was a direct effect of my sadness.   The sadness that I hear in your thread.

   Let me give you an example of change:

  Take Jerry71 for example.   He complained all the time about his situation at home.  At first he was given the love and understanding from the forums, but as time wore on forum members started telling him he needed to change his living situation.  Jerry was also lonely and wanted love in his life badly, something his situation did not necessarily facilitate.   Jerry for months would balk at the difficulties to make such changes and even take offense at some forum members stance telling him he could do it.   He was sad and felt his situation to be utterly hopeless...

   Fast forward one year...   Jerry is in his own place with a man he loves!  He also may not realize it, but his attitude has turned around 360 degrees!   I bet his health will also reap the benefits of his happiness, which makes me happy by the way.

  My point here Ray is that only you can change how you feel..  Whether it be to seek the help of a therapist, like me or figuring out what it is that is making you unhappy and changing it like Jerry.  You are taking a great first step here by addressing this, albeit not really seeing it.   Regardless we are here  to listen and hopefully offer support.

   Hey and don't worry or take offense at the squabbles here, because when it comes down to it we all really care for each other!  You let a hospital stay report come across these forums about anyone and you will see that persons detractors come in to support.  That's more than I can say for the guy who cuts you off at the red light!

  As they say in the NA and AA rooms "Keep coming back it works if you work it!"

   Regards,

  Thomas

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

Offline RevMC

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Re: Living with HIV, are we really better off?
« Reply #17 on: December 03, 2006, 01:13:04 PM »
Yes life is worth living.  I've been poz for 18 1/2 years.  Read my post About Me -- Rev. Michael.  I've accomplished a lot over the years.

My other half Louie isn't doing well at all.  I'm afraid for when he dies.  I'll be alone, in my early 40's and afraid I'll never meet anyone again (if I'm ever ready for another relationship, we've been together 10 years).  I'm afraid I'll die alone when it's my time.

But it's by posting on here and making some new friends that helps make these feelings go away.  No one ever promised us that life would be easy.  The way I look at it, if it wasn't for the HIV, who knows what else it might be.  We could get hit by a car and totally crippled, but we'd still be alive and learning how to handle that situation.

Hang in there hon, you are NOT alone.  We are all here for you.  These feelings will go away.  Live life to it's fullest and enjoy  yourself.  I know it's easier said than done, but give it a try, what do you have to lose?  NOTHING!!!  You have a whole lot of wonderful experiences to enjoy.  I've learned to do this many years ago and other than the roller coaster of life, I'm glad in a way to at least know what baggage (HIV) I have coming along for that ride.

Part of my story: "Sale Of A Lifetime" POZ December 2003
http://www.poz.com/articles/172_752.shtml

Started on Truvada and Viramune on 2/15/07

Jan 8, 2007   t-cells 215  Viral Load 10,000  24%
March 26'th  T-cells 306   Viral Load  UNDETECTABLE
June 2007 t-cells 375 Viral Load UNDETECTABLE
August 2007 t-cells 290 Viral Load UNDETECTABLE



Love and Light and Reiki sent your way,
Rev. Michae

Offline thunter34

  • Member
  • Posts: 7,314
  • His name is Carl.
Re: Living with HIV, are we really better off?
« Reply #18 on: December 03, 2006, 01:13:46 PM »
Wow.  I can bear witness that what Thomas says above must be some gospel.  This sad Jerry, this Jerry that "balked at the difficulties"?  I don't know that guy.  I was actually kinda taken aback to hear that that guy existed at one point.  This was before I came onto the scene here.  This is the same man now of "Hey, everybody- gathering at our place!  The more the merrier!" and "check out our Christmas Tree!"  Amazing.  

Thomas:  Great post.  Thanks for that.
« Last Edit: December 03, 2006, 01:15:20 PM by thunter34 »
AIDS isn't for sissies.

Offline Longislander

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Re: Living with HIV, are we really better off?
« Reply #19 on: December 03, 2006, 01:17:21 PM »
I got here a few weeks before Jerry's life turned around. It warms the heart.
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline rayvjr

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Re: Living with HIV, are we really better off?
« Reply #20 on: December 03, 2006, 01:52:21 PM »
Hey don't get me wrong guys, I'm not about to jump off the roof or anything.  I was just figuring, what are my options?  Secondly, do I enjoy this "new" life?  For the last year I've been trying to keep my head up...but its a little tougher right now with the holidays and stuff...realizing and wondering what the future holds....no, I wasn't very lonely before, certainly I had my share of drama and problems...but this HIV thing...wow...did it mess up my life!!!

Offline libvet

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Re: Living with HIV, are we really better off?
« Reply #21 on: December 03, 2006, 01:54:53 PM »
I don't know if it just me being down these past few weeks, or if maybe there is something too it.  It seems that life with HIV can be very lonely.  So I ask myself, when the time comes, should I take the medicines or just let nature take its course?  Is living with HIV really worth living?  Sometimes, I think those who have passed before us had it better than us, they died quickly, without having to live with years of lonliness, stigma and pain.  I wonder...

Good lord!  Of course we are better off.   

The meds are generally not all that bad.  I realize that some people have a very hard time with medications, but I've been taking them for almost 7 years and have managed to work full-time the entire time despite starting from a nadir of 22 t-cells.

I'd not trade in a bout with diarrhea here and there for the months of agonizing esophageal candiasis that caused me to be unable to swallow or the weeks I spent with pneumonia where it hurt to breathe.

And as far as loneliness, stigma and pain are concerned, I am far from lonely.  I wouldn't hang around people that would stigmatize me.  I'm celebrating my 16th year with my lifepartner.  I am not in any pain.

The choice is ultimately yours.  If you find you can't handle the medications, then you don't have to take them, but from where I stand, life is full of possibilities whereas death holds only one.\

My quality of life is really good and I am in no hurry to see it end.

Michael.

Offline Terry

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Re: Living with HIV, are we really better off?
« Reply #22 on: December 03, 2006, 02:32:09 PM »

Life itself is worth it. HIV is just some difficult baggage one must learn to carry.

A person can feel lonely in a room full of friends or happy, by himself in a forest of trees. Itís all how you look at it. Some people actually like frowning rather than making an effort to enjoy themselves.

This time of the year use to be my favorite time of all. It then became the most depressing time of all. Iíve learned now; to treat each day as it comes. If Iím doing something with or for others, I'm happy. However, If I'm alone (Lets say on my birthday) Iím still going to be happy. Sometimes things just work out that way. Itís life!

And if your down/depressed let people know you are (Like you did here) then if theyíre ever down you can be their shoulder to lean on.


Offline Joe K

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Re: Living with HIV, are we really better off?
« Reply #23 on: December 03, 2006, 02:35:56 PM »
Hey Ray,

What you are experiencing is perfectly normal as we all go through some type of grieving process over becoming positive and that is a good thing.  Problems arise however, when you forget that living life well takes work.  Poz or not we all have challenges in life and I believe the real key is to develop abilities to help see you through, realize when you are in over your head and then, if necessary, swallow your pride for just a moment and ask someone for help.

You ask what options you have and I submit that your options are limitless, assuming you have the desire to reach for them.  There is never any shame in trying something and failing at it.  The shame comes from not even trying.  Bottom line my friend, is it is your life and if you want more from it, then get up off your duff and go find it.

Offline Razorbill

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Re: Living with HIV, are we really better off?
« Reply #24 on: December 03, 2006, 02:52:50 PM »
Try and focus on the present.  We don't know what's coming in the future.  It's so hard to plan for it.  and I agree with an earlier poster - one thing you do not want to do is refuse meds and die of aids.  Dying of aids sucks big time.

Offline red_Dragon888

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Re: Living with HIV, are we really better off?
« Reply #25 on: December 03, 2006, 07:51:46 PM »
You are really over thinking it. It is not a Death Wish you want, it is a Life Wish you want.  If nature is to take it course, it would have.  Maybe there are greater things ahead and you just do not see it yet.  To give up would be easy, but life is hard no matter what and I am a survivor like the song.  I wish, I demand, dam-it I will live the life I deserve and have all that I need for happiness.  I can not think "just give up."  I can not think, "This is God's plan."  I can think that I will be better, stonger, mentally greater and That is my wish for you now and your future.  Live.  Choose life.  Choose Happines.  Get stronger. 
http://www.youtube.com/watch?feature=player_embedded&v=I3ba3lnFHik

ďNeither look forward where there is doubt nor backward where there is regret. Look inward and ask not if there is anything o

Offline red_Dragon888

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Re: Living with HIV, are we really better off?
« Reply #26 on: December 03, 2006, 07:55:53 PM »
I understand the "they died quickly, without having to live with years of lonliness, stigma and pain.  I wonder...," but we live to change the from being lonely, we must fight the stigma, and as for the pain, what pain.  We live for them and the future.  Give up.  Not me. 
http://www.youtube.com/watch?feature=player_embedded&v=I3ba3lnFHik

ďNeither look forward where there is doubt nor backward where there is regret. Look inward and ask not if there is anything o

Offline Eldon

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  • Posts: 2,664
Re: Living with HIV, are we really better off?
« Reply #27 on: December 03, 2006, 08:16:55 PM »
Hey Ray...

Reach inside of you from within, find it, grab it, and hold it by its reins and adjust and live your life as you walk along your journey in this life. Surely, if you seek, you will find. I send my BEST wishes to you my friend.


Happy Holidays!

Offline skeebo1969

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  • Posts: 5,705
Re: Living with HIV, are we really better off?
« Reply #28 on: December 03, 2006, 08:30:48 PM »

   Ravy,

      Nobody is saying you want to jump off a roof or anything, but I wouldn't trivialize your feelings.   I mean dude it's pretty apparent from your most recent postings.  Remember All alone on a Friday Night?   Threads about wanting someone to talk to?  
      My bad for straying off your topic, but I just think it was something you did for responses to feelings you were going through...  and you know what?  There is absolutely nothing wrong with that.
      From your writings here I feel I can safely assume that you are an intelligent fellow.   I also will take the liberty to assume that you being HIV positive are aware of some of the OI's we suffer without the meds assisting our immune system.    Lastly I will determine you took none of this into account when you wrote this question.
      Let me clarify so people don't say I don't respect peoples wishes to die.   If it was someone who has given themselves an opportunity to fight and just can't do it anymore... then I understand!  If it's someone like you and me from a year ago.... then it's just plain silly talk!

    Just being honest Ravy.. no offense.

    Sincerely,

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

Offline ACinKC

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  • Posts: 2,994
  • Bring it VIRUS! #2 Ranked In-crowd Member!
Re: Living with HIV, are we really better off?
« Reply #29 on: December 04, 2006, 12:32:14 PM »
From what I remember about my initial diagnoses was that I had to watch out for some wild bus!

But seriously Ray Ray... check out my quote at the bottom of this message.  My moment came when my cousin, who was 1 month older than me.  Died of brain cancer.  He lived a great life helping others, had a wife and a 7 year old girl.  Would he trade me?  What would he give to have my virus rather than HIS.  His gave him a couple of months to live, I get DECADES.  The impact I can make and the love I have yet to feel..... I cant wait.

Do you stop fishing cause they arent biting at that exact second, or do you keep going and HOPE for the bite?
LIFE is not a race to the grave with the intention of arriving safely
in a pretty and well-preserved body, but, rather to skid in broadside,
thoroughly used up, totally worn out, and loudly proclaiming--WOW! WHAT A
RIDE!!!

 


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