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Author Topic: Long Term Survivors: Help!: How do you do it?  (Read 9195 times)

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Offline LatinAlexander

  • Member
  • Posts: 599
  • Bogota, Colombia
Long Term Survivors: Help!: How do you do it?
« on: August 22, 2007, 05:53:25 PM »
To those who have walked before me:

You know I was diagnosed 13 months ago. And started meds 12 months ago. And I am young (late 20s). But, it is just that sometimes, I feel like reality coming and being overwhelming, and I feel like realizing I DO have this virus, and then panic, and fear, ant terror takes over my mind, and I feel sad, and cry. And cannot help but to thhink about how would my life had been If I wouldn't have tested +, and then think about a terrible, painful dead, and sadness to my family, and pretty much an scenario like "Strrets Of Philadelphia".

And I feel paranoid. Like with every single thing in my body. Even just a small headache triggers a bunch on emotional distress, because I do not know if a headache is just a headache, or something worst, or if my meds are not working anymore, and on, and on, and on

And then I think that I should go out and talk to people, and meet someone. And then I feel like I cannot trust anyone, because of the disclosure, and what if I get to meet an imprudent person , that goes saying that I am + to everyone in town, and then, I decide to stay at home, alone.

Have you felt it? If so, how do you live with this? .. I am sooo newbie , and I feel like needing to hear the voice of those who have been there, and I do not want to hear perfect words. I wanna hear the real thing. Nice or not.

Thank you for being patient with me. It is just that facing your fears is like walking alone in the dark. And being a kid again. And being afraid.

Alex
« Last Edit: August 22, 2007, 05:55:41 PM by LatinAlexander »
Poz since Jul 19 2006
Initial numbers : CD4-250 VL 3500
First labs after HAART (Dec 04-2006) : CD4-432 VL-<40 (Undetectable)  cd4%=25.11%
Started HAART: Combivir+Efavirenz Aug 26 7:38 pm
Feb 08 2007 - Gradually stopping HAART cause of Myalgia. Protecting Efavirenz. Stopped Efavirenz, ahead with Combivir....
February 17 Combivir stopped.
April 3 -07 : Started ddi+3tc+efavirenz...
Gay and positive (What a lack of Identity...:) )
Looking for my Ben....

Offline AlanBama

  • Member
  • Posts: 3,578
  • 'class' of '87
Re: Long Term Survivors: Help!: How do you do it?
« Reply #1 on: August 22, 2007, 05:58:17 PM »
Hi Alex

The only advice I can give you sweetie is to just take one day at a time.   That's what I've been doing for a lot of years now.   Some days, things are overwhelming.....some days, not so bad.    Plan to live your life, don't plan to die!  That is the biggest mistake I made.

hugs,

Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline gaspode

  • Member
  • Posts: 37
  • A very naughty nurse
Re: Long Term Survivors: Help!: How do you do it?
« Reply #2 on: August 22, 2007, 06:44:22 PM »
Hi Alex,

If I could answer the quesyion I'd write THE definitive "living with HIV" book and make my fortune! But how do we do it? I think, in a nut shell, it's because the alternative is to lie down and die.

But, after 21 years:

sometimes I am invincible and HIV cannot touch me
sometimes I am so mortal I am afraid
some mornings I wake up and don't remember I have HIV
some mornings I wake up, remember I have HIV and think "so what?"
some mornings I wake up. remember I have HIV and it hits me like I've just been told this
sometimes I hate my body, because it is a walking biohazard
sometimes I love my body because it has brought me this far
always I am a wreck when I go to get my blood results, because this time could be the beginning of the end

AWe must all find our own way, but you're still around so you're obviously finding your way.

Gary (who is always very happy to be alive)

Offline LatinAlexander

  • Member
  • Posts: 599
  • Bogota, Colombia
Re: Long Term Survivors: Help!: How do you do it?
« Reply #3 on: August 22, 2007, 06:47:42 PM »
some mornings I wake up. remember I have HIV and it hits me like I've just been told this
----
always I am a wreck when I go to get my blood results, because this time could be the beginning of the end

YES! That is what I am talking about. I woke up this morning. And everything was ok, until 10 seconds later, where I reminded I had HIV. And then missed the previous 10 seconds.

Alex
Poz since Jul 19 2006
Initial numbers : CD4-250 VL 3500
First labs after HAART (Dec 04-2006) : CD4-432 VL-<40 (Undetectable)  cd4%=25.11%
Started HAART: Combivir+Efavirenz Aug 26 7:38 pm
Feb 08 2007 - Gradually stopping HAART cause of Myalgia. Protecting Efavirenz. Stopped Efavirenz, ahead with Combivir....
February 17 Combivir stopped.
April 3 -07 : Started ddi+3tc+efavirenz...
Gay and positive (What a lack of Identity...:) )
Looking for my Ben....

Offline gaspode

  • Member
  • Posts: 37
  • A very naughty nurse
Re: Long Term Survivors: Help!: How do you do it?
« Reply #4 on: August 22, 2007, 06:50:14 PM »
If it helps, hun, the waking up and really being hit with it gets less frequent!!

Offline LatinAlexander

  • Member
  • Posts: 599
  • Bogota, Colombia
Re: Long Term Survivors: Help!: How do you do it?
« Reply #5 on: August 22, 2007, 06:57:46 PM »
Hi Alex

The only advice I can give you sweetie is to just take one day at a time.   That's what I've been doing for a lot of years now.   Some days, things are overwhelming.....some days, not so bad.    Plan to live your life, don't plan to die!  That is the biggest mistake I made.

hugs,

Alan

Thank you Alan. It is just that sometimes everything loks soooooo big, and so impossible. And I was one person that even being gay, wanted to have kids, and grandchildren, and then all that is gone, because I do not know If I can raise them, and Fi something happens and I die, who would take care of them? Is like putting your life upside down

Alex.
Poz since Jul 19 2006
Initial numbers : CD4-250 VL 3500
First labs after HAART (Dec 04-2006) : CD4-432 VL-<40 (Undetectable)  cd4%=25.11%
Started HAART: Combivir+Efavirenz Aug 26 7:38 pm
Feb 08 2007 - Gradually stopping HAART cause of Myalgia. Protecting Efavirenz. Stopped Efavirenz, ahead with Combivir....
February 17 Combivir stopped.
April 3 -07 : Started ddi+3tc+efavirenz...
Gay and positive (What a lack of Identity...:) )
Looking for my Ben....

Offline MOONLIGHT1114

  • Member
  • Posts: 1,918
  • Cheech 2.2.94 - 4.23.10 We miss you so much!
Re: Long Term Survivors: Help!: How do you do it?
« Reply #6 on: August 22, 2007, 07:01:03 PM »
Hi Alex~

You ask how we do this?  How do we get through each day with the virus, and for many of us for so many years now?  December will mark 14 years for me since testing pos, and there are many in these Forums that are way past me in years of living with the virus.

The best advice I can give is to be assertive in getting good medical treatment.  For me, that has been my first line of defense.  I have been undetectable for about 5 years now since starting Sustiva.  my side effects are minimal and have been very easy to deal with.

Another piece of advice is this....Let you be YOU.  The mental/emotional toll this virus can bring is unbearable for some.  Know that its OK to cry, that its OK to be scared -- that what you're feeling is normal.  The hardest part is reaching out.  It took me 13-1/2 years to find a community where I felt I belonged, where I didn't feel so "different" from everyone else, where my voice could be heard.  Yes, having HIV is an emotional roller-coaster for me, but I let myself FEEL.  I have to in order to get through the pain and be better the next day.  I don't dwell, I don't hesitate.  I push myself and keep moving.  Yes, I am tired, sometimes I am uncomfortable, but I do what I can in moderation.  Whether its speaking with my doc about a new regimen, exercising, visiting family, talking on the phone, sleeping....ALL in moderation, because I owe it to me to be comfortable and in tune with what's going on with ME.  

Yes, one day at a time, as you see fit, whatever you feel comfortable with.  Just remember to never sit idle and never give up.

Love You,

~Cindy  :-*
HIV+ since '93, 1/12 - CD4 785 and undet.   WOO-HOO!!

Offline LatinAlexander

  • Member
  • Posts: 599
  • Bogota, Colombia
Re: Long Term Survivors: Help!: How do you do it?
« Reply #7 on: August 22, 2007, 07:01:46 PM »
If it helps, hun, the waking up and really being hit with it gets less frequent!!

Well, I guesssome days I just wake up like "Morning, I have HIV, I am gay, gotta work, its cold, need some more sleep,,,, wait, I have HIV"

Thank you Gas
Poz since Jul 19 2006
Initial numbers : CD4-250 VL 3500
First labs after HAART (Dec 04-2006) : CD4-432 VL-<40 (Undetectable)  cd4%=25.11%
Started HAART: Combivir+Efavirenz Aug 26 7:38 pm
Feb 08 2007 - Gradually stopping HAART cause of Myalgia. Protecting Efavirenz. Stopped Efavirenz, ahead with Combivir....
February 17 Combivir stopped.
April 3 -07 : Started ddi+3tc+efavirenz...
Gay and positive (What a lack of Identity...:) )
Looking for my Ben....

Offline gaspode

  • Member
  • Posts: 37
  • A very naughty nurse
Re: Long Term Survivors: Help!: How do you do it?
« Reply #8 on: August 22, 2007, 07:02:37 PM »
It is just that sometimes everything loks soooooo big, and so impossible.

It is HUGE. But not impossible. But its very hugeness is one of the reasons to take one day at a time, because then it comes at you in more manageable chunks, rather than one big massive, impossible mess!

Gary (who is friggin HOPELESS at following his own advice)

Offline gaspode

  • Member
  • Posts: 37
  • A very naughty nurse
Re: Long Term Survivors: Help!: How do you do it?
« Reply #9 on: August 22, 2007, 07:04:27 PM »
Well, I guesssome days I just wake up like "Morning, I have HIV, I am gay, gotta work, its cold, need some more sleep,,,, wait, I have HIV"

Thank you Gas

Mostly I wake up and think f***, gotta go to work  ;)

Offline LatinAlexander

  • Member
  • Posts: 599
  • Bogota, Colombia
Re: Long Term Survivors: Help!: How do you do it?
« Reply #10 on: August 22, 2007, 07:10:08 PM »
Cindy-Pie

The best advice I can give is to be assertive in getting good medical treatment.  

Yes. I have been lucky on this. My ID doc is smart, and is very nice with me. He is ok talking about sex (very open), but I wonder if It would be better with a gay doc

Another piece of advice is this....Let you be YOU.  The mental/emotional toll this virus can bring is unbearable for some.  Know that its OK to cry, that its OK to be scared -- that what you're feeling is normal.  The hardest part is reaching out.  It took me 13-1/2 years to find a community where I felt I belonged, where I didn't feel so "different" from everyone else, where my voice could be heard. 

It is also that feeling. I haven't gone to party since a long time ago. I guess i just keep my very best friends, and I really do not feel like belonging somewhere. It is like Sitting with your undies between your a**. A feeling of not fitting.

Just remember to never sit idle and never give up.

this part is so dofficult. Because I get myself busy with work, or whatever. But as Cher says "Sooner or later, we all sleep alone" and at that moment is where everything comes to my mind

Thank you Cindy (I love girls. Behind every great women, there is a gay friend)
Poz since Jul 19 2006
Initial numbers : CD4-250 VL 3500
First labs after HAART (Dec 04-2006) : CD4-432 VL-<40 (Undetectable)  cd4%=25.11%
Started HAART: Combivir+Efavirenz Aug 26 7:38 pm
Feb 08 2007 - Gradually stopping HAART cause of Myalgia. Protecting Efavirenz. Stopped Efavirenz, ahead with Combivir....
February 17 Combivir stopped.
April 3 -07 : Started ddi+3tc+efavirenz...
Gay and positive (What a lack of Identity...:) )
Looking for my Ben....

Offline MOONLIGHT1114

  • Member
  • Posts: 1,918
  • Cheech 2.2.94 - 4.23.10 We miss you so much!
Re: Long Term Survivors: Help!: How do you do it?
« Reply #11 on: August 22, 2007, 07:46:12 PM »
 ;)  Glad to share my personal story with you and others tonight.....
HIV+ since '93, 1/12 - CD4 785 and undet.   WOO-HOO!!

Offline DanielMark

  • Member
  • Posts: 1,475
Re: Long Term Survivors: Help!: How do you do it?
« Reply #12 on: August 23, 2007, 06:39:40 AM »
It is just that facing your fears is like walking alone in the dark. And being a kid again. And being afraid.

Alex,

It's okay to be afraid. One year into this, itís also understandable.

Just remember tho that those monsters you imagine in the dark usually aren't as large when you turn the light on. Turn around and face your fears and I bet you will find that they no longer control you. To me, keeping busy is fine, unless youíre using it to run away from your fears instead of facing them. Then it can hurt you more than help you.

One thing that has helped me get through nearly 19 years of living with this is trying to remember that what others have experienced in living with this unwanted houseguest doesn't guarantee that I will experience exactly the same things. Everybody's different. To that end, it helps to quiet any wild imaginings my mind might dream up about the future. No one can predict the future.

Yes, everyone is going to die, of AIDS or of life, but no need to bring that about sooner by living in a state of panic or on guard about things that may or may not ever happen. The human mind can only take so much of that before the stress makes us sick.

I also try not to abuse my body too much with alcohol or other drugs or unhealthy eating habits. Rest is also something I try to get enough of. Our bodies are working overtime both night and day and need down time to re-energize.

And donít forget to breathe!

(((HUG)))

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline jack

  • Member
  • Posts: 1,578
  • fomerly the loser known as Jake
Re: Long Term Survivors: Help!: How do you do it?
« Reply #13 on: August 23, 2007, 07:05:15 AM »
as my priest told me,its like a tooth ache in the middle of the night, after awhile you get used to the pain.
Plan on living a normal lifespan and dont waste time thinking about all the bad things that could happen or all the good things you might miss. I am still working on that one after 20 years.

Offline Dachshund

  • Member
  • Posts: 5,921
Re: Long Term Survivors: Help!: How do you do it?
« Reply #14 on: August 23, 2007, 07:35:38 AM »
Hi Alex

The only advice I can give you sweetie is to just take one day at a time.   That's what I've been doing for a lot of years now.   Some days, things are overwhelming.....some days, not so bad.    Plan to live your life, don't plan to die!  That is the biggest mistake I made.

hugs,

Alan

Truer words were never spoken. If I could add one thing it would be laughter, or a dog. A pet can make an amazing difference in your life, and if you do get a dog, rumor has it that dachshund's have amazing curative powers. ;D
« Last Edit: August 23, 2007, 08:36:51 AM by Dachshund »

Offline BT65

  • Global Moderator
  • Member
  • Posts: 9,626
  • Diagnosed + 1989
Re: Long Term Survivors: Help!: How do you do it?
« Reply #15 on: August 23, 2007, 08:32:55 AM »
Alex-
  It's understandable that you would be feeling like this, being newly diagnosed.  I agree with Alan about the one day at a time.  Sometimes when I have lots of things to do and I feel tired, I put them in order of what should be done first, and what could wait until tomorrow.  I've been poz for 18 years (at least that's when I tested poz) and one thing I really try not to do anymore is project.  You know, my projections of what I think is going to happen. 
    I also have a small circle of really good friends, all of whom know about my status.  That makes it easier to talk with someone if I feel the need. 
    As far as kids and grandchildren, I have one daughter (23) and two grandkids (ages six and three).  My daughter is not poz.  Don't snuff out what you would like to have happen in the future because of your status.  Keep your dreams and your plans.
    Numbers on bloodwork can drive you crazy if you let them.  Just use them as a guide as to how you need to live life, what changes should be made etc.
    Hope this helps.  We're always here to listen.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline mjmel

  • Member
  • Posts: 2,069
Re: Long Term Survivors: Help!: How do you do it?
« Reply #16 on: August 23, 2007, 01:42:21 PM »
Alex, I wish we could sit and talk a spell. You worry much. And the mind--well, it can conjure up stuff that'll drive you crazy with worry. Some wise advice given in particular by AlanBama & Dachshund. (not meaning to diminish what others posted)
GET WEINER DOG.
Hugs,
Mike

Jack: that priest of yours is just a few cards short of a deck, young man.

Offline buca45

  • Member
  • Posts: 187
Re: Long Term Survivors: Help!: How do you do it?
« Reply #17 on: August 23, 2007, 02:03:02 PM »
I know it sounds a bit cliche, but just remember, 'you have the virus....it doesn't have you'.
although a simple mantra, it's one I've adopted and live by. Do I hurt sometimes? Yes....Do i think about how I'm going to die? Yes. But when you really think about it, doesn't everyone?
Regardless if they have 'the bug' (or any number of other medical maladies.....and yes, at times I am happy to have 'just hiv' and not something worse) or they are healthy, humans all go through moments of anxiety and doubt about a number of issues.
so maybe you should just consider yourself 'a human with flaws' like millions of others and get on with your life. For everybad thing in your life, take time to think of the good things and focus on those. You are a young man with your whole LONG life in front of you, so deal with your malady, follow your docs instructions and do all the research you can about the ins and outs of this disease and make positive decisions for yourself. Live a good, healthy and positive life and get on with it.
All bad thoughts and no good thoughts makes you a very dull boy!!
"Love and Laughter and Happiness Ever After"

Offline dixieman

  • Member
  • Posts: 889
Re: Long Term Survivors: Help!: How do you do it?
« Reply #18 on: August 23, 2007, 02:49:06 PM »
Alex,  Well its been 16 years soon to be 17 with this virus... the last b-day gift my ex gave me... but, I'm to blame likewise. First make the best of it... accept you have this virus... read...get informed... knowledge is power...  everything your hearts desire... many sites on the internet... one that is helpful...   www.thebody.com great site with records dating several years back on what people have had to deal with ... such as side effects.... from the meds... nutritional advice etc... people whov'e been there, done that... and trying to figure out what in the hell is going on with my body? and my best advice is to never give up... no matter how low...depressed... alone... etc... never give in... this is sometimes extremely difficult but, I have outlived over 50 friends whove died from this and I do have to say... I still am looking good... LOL cd4's 1589 non-detectable... lowest cd4's were 127 back in 1995... have any question everyone on this forum will do their best to help!...

Offline LatinAlexander

  • Member
  • Posts: 599
  • Bogota, Colombia
Re: Long Term Survivors: Help!: How do you do it?
« Reply #19 on: August 23, 2007, 03:50:33 PM »
It is just that facing your fears is like walking alone in the dark. And being a kid again. And being afraid.

Alex,

It's okay to be afraid. One year into this, itís also understandable.

Just remember tho that those monsters you imagine in the dark usually aren't as large when you turn the light on. Turn around and face your fears and I bet you will find that they no longer control you. To me, keeping busy is fine, unless youíre using it to run away from your fears instead of facing them. Then it can hurt you more than help you.

One thing that has helped me get through nearly 19 years of living with this is trying to remember that what others have experienced in living with this unwanted houseguest doesn't guarantee that I will experience exactly the same things. Everybody's different. To that end, it helps to quiet any wild imaginings my mind might dream up about the future. No one can predict the future.

Yes, everyone is going to die, of AIDS or of life, but no need to bring that about sooner by living in a state of panic or on guard about things that may or may not ever happen. The human mind can only take so much of that before the stress makes us sick.

I also try not to abuse my body too much with alcohol or other drugs or unhealthy eating habits. Rest is also something I try to get enough of. Our bodies are working overtime both night and day and need down time to re-energize.

And donít forget to breathe!

(((HUG)))

Daniel

Hi Daniel:

Thank you man!: What happened is that , when I remember I have HIV, I have this feeling of "I screwed up my life". I do not know who gave it to me. And then i remeber I am mortal. And it is not that I am scared of death itself, but of the way to die.

Yes. We are not all the same. And that is a mirros that can have two faces

Alex (Who needs to beathe)
Poz since Jul 19 2006
Initial numbers : CD4-250 VL 3500
First labs after HAART (Dec 04-2006) : CD4-432 VL-<40 (Undetectable)  cd4%=25.11%
Started HAART: Combivir+Efavirenz Aug 26 7:38 pm
Feb 08 2007 - Gradually stopping HAART cause of Myalgia. Protecting Efavirenz. Stopped Efavirenz, ahead with Combivir....
February 17 Combivir stopped.
April 3 -07 : Started ddi+3tc+efavirenz...
Gay and positive (What a lack of Identity...:) )
Looking for my Ben....

Offline LatinAlexander

  • Member
  • Posts: 599
  • Bogota, Colombia
Re: Long Term Survivors: Help!: How do you do it?
« Reply #20 on: August 23, 2007, 03:52:37 PM »
as my priest told me,its like a tooth ache in the middle of the night, after awhile you get used to the pain.
Plan on living a normal lifespan and dont waste time thinking about all the bad things that could happen or all the good things you might miss. I am still working on that one after 20 years.

Get used to the pain. That is what I need :)

thank you Jack
Poz since Jul 19 2006
Initial numbers : CD4-250 VL 3500
First labs after HAART (Dec 04-2006) : CD4-432 VL-<40 (Undetectable)  cd4%=25.11%
Started HAART: Combivir+Efavirenz Aug 26 7:38 pm
Feb 08 2007 - Gradually stopping HAART cause of Myalgia. Protecting Efavirenz. Stopped Efavirenz, ahead with Combivir....
February 17 Combivir stopped.
April 3 -07 : Started ddi+3tc+efavirenz...
Gay and positive (What a lack of Identity...:) )
Looking for my Ben....

Offline LatinAlexander

  • Member
  • Posts: 599
  • Bogota, Colombia
Re: Long Term Survivors: Help!: How do you do it?
« Reply #21 on: August 23, 2007, 03:55:49 PM »
Truer words were never spoken. If I could add one thing it would be laughter, or a dog. A pet can make an amazing difference in your life, and if you do get a dog, rumor has it that dachshund's have amazing curative powers. ;D

One day at a time. Adding to my surviving recipe. (Freaking long recipe, btw.

Thanks Dachshund  8)

(Alex wonders: What kind of curative power does he have? )



Poz since Jul 19 2006
Initial numbers : CD4-250 VL 3500
First labs after HAART (Dec 04-2006) : CD4-432 VL-<40 (Undetectable)  cd4%=25.11%
Started HAART: Combivir+Efavirenz Aug 26 7:38 pm
Feb 08 2007 - Gradually stopping HAART cause of Myalgia. Protecting Efavirenz. Stopped Efavirenz, ahead with Combivir....
February 17 Combivir stopped.
April 3 -07 : Started ddi+3tc+efavirenz...
Gay and positive (What a lack of Identity...:) )
Looking for my Ben....

Offline LatinAlexander

  • Member
  • Posts: 599
  • Bogota, Colombia
Re: Long Term Survivors: Help!: How do you do it?
« Reply #22 on: August 23, 2007, 03:58:36 PM »
Alex, I wish we could sit and talk a spell. You worry much. And the mind--well, it can conjure up stuff that'll drive you crazy with worry. Some wise advice given in particular by AlanBama & Dachshund. (not meaning to diminish what others posted)
GET WEINER DOG.
Hugs,
Mike

Jack: that priest of yours is just a few cards short of a deck, young man.

Mike: You are rigth in what you say. A very dear friend of mine, tells me that I shouldn't think, because I begin to create movies in my head. And yes, some days they make me crazy.

I'd like to have a dog. But it is just that I live in a very small place. (I happen to love small lazy dogs)

Alex
Poz since Jul 19 2006
Initial numbers : CD4-250 VL 3500
First labs after HAART (Dec 04-2006) : CD4-432 VL-<40 (Undetectable)  cd4%=25.11%
Started HAART: Combivir+Efavirenz Aug 26 7:38 pm
Feb 08 2007 - Gradually stopping HAART cause of Myalgia. Protecting Efavirenz. Stopped Efavirenz, ahead with Combivir....
February 17 Combivir stopped.
April 3 -07 : Started ddi+3tc+efavirenz...
Gay and positive (What a lack of Identity...:) )
Looking for my Ben....

Offline LatinAlexander

  • Member
  • Posts: 599
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Re: Long Term Survivors: Help!: How do you do it?
« Reply #23 on: August 23, 2007, 04:02:56 PM »
I know it sounds a bit cliche, but just remember, 'you have the virus....it doesn't have you'.
although a simple mantra, it's one I've adopted and live by. Do I hurt sometimes? Yes....Do i think about how I'm going to die? Yes. But when you really think about it, doesn't everyone?
Regardless if they have 'the bug' (or any number of other medical maladies.....and yes, at times I am happy to have 'just hiv' and not something worse) or they are healthy, humans all go through moments of anxiety and doubt about a number of issues.
so maybe you should just consider yourself 'a human with flaws' like millions of others and get on with your life. For everybad thing in your life, take time to think of the good things and focus on those. You are a young man with your whole LONG life in front of you, so deal with your malady, follow your docs instructions and do all the research you can about the ins and outs of this disease and make positive decisions for yourself. Live a good, healthy and positive life and get on with it.
All bad thoughts and no good thoughts makes you a very dull boy!!

Hi Buca: Flaws. That is a word I have to learnt. I mean, I always felt like a perfect boy, the smartest, the best. And suddenly HIV. I wasn't a saint at all, But I wasn't a party boy either, never did any drugs, just on the lower end of the gay-life spectrum so to speak.

Get on with Life: That is what I wish. It is just that sometimes it's a nvery heavy weight to lift.

Alex
Poz since Jul 19 2006
Initial numbers : CD4-250 VL 3500
First labs after HAART (Dec 04-2006) : CD4-432 VL-<40 (Undetectable)  cd4%=25.11%
Started HAART: Combivir+Efavirenz Aug 26 7:38 pm
Feb 08 2007 - Gradually stopping HAART cause of Myalgia. Protecting Efavirenz. Stopped Efavirenz, ahead with Combivir....
February 17 Combivir stopped.
April 3 -07 : Started ddi+3tc+efavirenz...
Gay and positive (What a lack of Identity...:) )
Looking for my Ben....

Offline LatinAlexander

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Re: Long Term Survivors: Help!: How do you do it?
« Reply #24 on: August 23, 2007, 04:08:01 PM »
Alex,  Well its been 16 years soon to be 17 with this virus... the last b-day gift my ex gave me... but, I'm to blame likewise. First make the best of it... accept you have this virus... read...get informed... knowledge is power...  everything your hearts desire... many sites on the internet... one that is helpful...   www.thebody.com great site with records dating several years back on what people have had to deal with ... such as side effects.... from the meds... nutritional advice etc... people whov'e been there, done that... and trying to figure out what in the hell is going on with my body? and my best advice is to never give up... no matter how low...depressed... alone... etc... never give in... this is sometimes extremely difficult but, I have outlived over 50 friends whove died from this and I do have to say... I still am looking good... LOL cd4's 1589 non-detectable... lowest cd4's were 127 back in 1995... have any question everyone on this forum will do their best to help!...

Hi Dixie: I am kind of a information manica. I read anything HIV related. I am not a denialist. I know I have it. Period. But I feel exactly the same way that when someone you love dies. Like that if you go somewhere, that person will be there, and everything will be fine, and happiness will be back.

Givin up is something that I had a conversation with my doctor once. it is just that we are put in a situation where, doesn't matter what we do, we ar enot going to win. It is not like Cancer (and I have close people die of it), when the doctors tell you "You go to Chemo, and you have a chance to get rid of it". I told my doctor I would have better had cancer, ebcause then there was a chance of winning. But with HIV, it is a lost battle. No chance to get rid of it.  So if there is no chance to get ird of it and beat it, why fight?

Alex
Poz since Jul 19 2006
Initial numbers : CD4-250 VL 3500
First labs after HAART (Dec 04-2006) : CD4-432 VL-<40 (Undetectable)  cd4%=25.11%
Started HAART: Combivir+Efavirenz Aug 26 7:38 pm
Feb 08 2007 - Gradually stopping HAART cause of Myalgia. Protecting Efavirenz. Stopped Efavirenz, ahead with Combivir....
February 17 Combivir stopped.
April 3 -07 : Started ddi+3tc+efavirenz...
Gay and positive (What a lack of Identity...:) )
Looking for my Ben....

Offline Moffie65

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Re: Long Term Survivors: Help!: How do you do it?
« Reply #25 on: August 23, 2007, 06:32:01 PM »
To those who have walked before me:

And then I think that I should go out and talk to people, and meet someone. And then I feel like I cannot trust anyone, because of the disclosure, and what if I get to meet an imprudent person , that goes saying that I am + to everyone in town, and then, I decide to stay at home, alone.

Have you felt it? If so, how do you live with this? .. I am sooo newbie , and I feel like needing to hear the voice of those who have been there, and I do not want to hear perfect words. I wanna hear the real thing. Nice or not.

Thank you for being patient with me. It is just that facing your fears is like walking alone in the dark. And being a kid again. And being afraid.

Alex

My dear Alex,

You are currently one of the most honest members of this forum with your confessions of fear and loathing of your current situation.  This is not only admirable, but places you squarely in a position to take action to change your state of mind.  Remember, it is your mind and not anyone else's, and you have total power over it and its workings.

Now, I have outlined some of your statements that I found in my experience were not only "self damaging" but utterly not worth carrying through a life with HIV.  I will try to explain.  You have stated that you are a gay man.  That is a part of you and a part of who you are.  You might deny it, but to do so is not only futile, but is also very damaging to your own psyche.  In the same way, HIV is now part of who you are.  It will be with you until you die, and that is just the way it is.  So, do you by any stretch of the imagination consider it prudent to try to hide this very part of you, and not disclose for the next 10, 20, 30 or 40 years?  Whew, that would place such a strain on your own mind, heart and persona, that sooner or later you are going to crumble.  Part of the acceptance of HIV and living with it, is that very nasty subject of disclosure.  How difficult is it going to be to go through the next 30 years making every effort in your being to keep this secret from everyone that touches your life?  How difficult is it going to be to try to trust someone enough to become a good friend, knowing that some day in the future, that friend might make a slip and let your secret out of the bag?  Remember, HIV is for a lifetime.....  That is a very long time.   

Considering this factor, was one of the most liberating and empowering things that I learned while living with HIV.  Acknowledging that you are in fact HIV+ is one of the biggest and most daunting hurdles that you must conquer, and disclosure to family, friends and work, then sets you up to "create" a new and exciting life while "Living WITH HIV/AIDS" and not you living with it!  I realize that it all sounds like semantics, but I assure you that all the responders to this thread that have been self empowered, have at some time in their lives taken the bull by the horns and come out of the HIV closet.  Many of us have nailed the damn thing shut, which then frees us up to do and create exciting things for our lives with the consideration of our HIV limitations.  Remember, I was confined to bed for the better part of three years, and from then confined to a wheel chair for another five years.  Now when I cannot walk, I mount my electric Zippy Cart and off I go, with my red ribbon firmly stuck to the back and in plain view of anyone that isn't blind.  Am I special for that?  No, not one iota, but do I gain comfort in the fact that I will not let HIV get me down and crush my life? That is a definite no.  I try to celebrate life, even when my head is in the toilet every morning, barfing up what is left of the Trizivir from the night before.  It is just part of life as I now know it.

Betty suggested that when living with HIV, one must stay flexible and that plans are always tenuous at best.  This I have found to be very true, and when making plans, I must consider that my body might change those plans.  I cannot get all worked up over that reality, but only accept that maybe I shouldn't have made the plans I made for that period of time. 

Please look at the message I have given you here, and please remember that part of your survival and good health in the future will totally depend on how you deal with the virus, both physically and emotionally, and coming out of that damn closet of secrecy will change your life, and do so in a positive direction.  Oh yes, some in your family will shit all over themselves, but this is not their life.  They gave you life, and for you to take this bug and force you into the darkness for the next 30 years would be so very sad and destructive.  There are many many of us out here who have nailed the closet of secrecy closed for good, and I must tell you, I don't miss that thing at all.  It was totally miserable.

These are my thoughts.

Cheers.
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline Terry

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Re: Long Term Survivors: Help!: How do you do it?
« Reply #26 on: August 23, 2007, 09:23:43 PM »
and I do not want to hear perfect words.

Latin,

that's really what life is all about. We'd like our lives to be perfect like as in the movies, but in the real world life just really sucks. There are no perfect words or perfect answers.

No one person can give you the correct answer to your question. If you wish to, you can wallow in self-pity for the rest of your life. Iíve found that AIDSmeds.com is the perfect environment for that kind of self-flagellation.

If you donít want to hear the perfect words??? Well then accept what is  and then go on with your life.

The simple fact is, you are here now, and you will get older and you (As everyone else will.) eventually have happen, will die.





Offline buca45

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Re: Long Term Survivors: Help!: How do you do it?
« Reply #27 on: August 24, 2007, 12:34:48 AM »
Hi Buca: Flaws. That is a word I have to learnt. I mean, I always felt like a perfect boy, the smartest, the best. And suddenly HIV. I wasn't a saint at all, But I wasn't a party boy either, never did any drugs, just on the lower end of the gay-life spectrum so to speak.

Get on with Life: That is what I wish. It is just that sometimes it's a nvery heavy weight to lift.

Alex

Well never in my 48 odd years have I ever come across anyone who was the perfect anything, but i totally understand what you are saying. Continue to strive to be the best at whatever you do, especially in making decisions where your health and well being  are concerned. Every man is flawed to an extent in some way or another, it is what makes us who we are. Just resist that cop out that will make you only a flaw and nothing else.

Yes, I know, It is a heavy weight to lift in the beginning, but as it goes along, you will become stronger because of it. We all have been there and have all  lived to talk about it,  just as you will.

Best of luck to you in finding the right, healthy path to take.....just keep your head up and think strong, positive thoughts......you owe it to yourself!!!!
« Last Edit: August 24, 2007, 12:36:19 AM by buca45 »
"Love and Laughter and Happiness Ever After"

Offline DanielMark

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Re: Long Term Survivors: Help!: How do you do it?
« Reply #28 on: August 24, 2007, 03:51:05 AM »
Hi Daniel:

Thank you man!: What happened is that , when I remember I have HIV, I have this feeling of "I screwed up my life". I do not know who gave it to me. And then i remeber I am mortal. And it is not that I am scared of death itself, but of the way to die.


Alex,

I believe the inner messages we send ourselves are important, because I believe they can have an effect on our bodies and our health. Yes you made a mistake. Most of us who are here are here because we did just that. Did you screw up your entire life? I doubt it. Youíre still you, as the song says, and you donít need to be perfect to be a valuable and loveable human being.

Like you, I am not afraid to die, but I admit I am sometimes afraid of the pain and complications that I might have to go through in doing so. BUT, none of us can say for sure how we will die. Life is full of surprises. I could get hit by lightning or a big truck. Trying to play Nostradamus is just a waste of time.

I used to be a perfectionist too, because I felt so unworthy thanks to the way I was raised. Then there came a point when I decided to forgive myself for being human and making a poor decision because I got sick and tired of being my own worst enemy. But it took a while (and many hours of therapy) for me to get to that point.

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline aztecan

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  • 28 years positive, 56 years a pain in the butt
Re: Long Term Survivors: Help!: How do you do it?
« Reply #29 on: August 25, 2007, 12:24:31 AM »
Hey Alex,

It is hard for me to add to what has already been posted. One thing I would say though is to not only take it a day at a time, but relish each day.

I think I have never felt more alive than when I realize my days are numbered. For some reason, it makes this day that much more poignant, more precious.

After 22-plus years with the virus, it is one thing I have learned.

HUGS,

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

Offline red_Dragon888

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Re: Long Term Survivors: Help!: How do you do it?
« Reply #30 on: August 25, 2007, 09:05:38 PM »
Wow... I have been through all that and then some.  All I can say is that in time you will become stronger and better able to handle the stress.  Now in my 20 plus years of HIV I mostly don't think about it.  Even the meds are becoming apart of my lifestlye.  (I swear I never been so commited to anything like my meds) Maybe you have to go through the rough before you get to the smooth.  Or maybe it is just me.  Take care...
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 sail

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Re: Long Term Survivors: Help!: How do you do it?
« Reply #31 on: August 26, 2007, 10:08:54 AM »
Hi Alex, I doubt that I can add much to whats been said, but I'll try... tested poz in '90, before HAART, and I said to myself, Well that changes things, but I decided not to accept it, which is different from denial...it meant ....I kept on living! I took better care of myself, I went out sailing more often, I really listened to Beethoven's symphonies, I stopped and enjoyed sunsets, I forgot about hiv, yeah, it was there...but I put it aside, if you can get my thought. And here I am, all these years later and only this last year have I suffered any real inconvenience...you just have to pick yourself up and get on with life!
Hope this helps!

Offline Terry

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Re: Long Term Survivors: Help!: How do you do it?
« Reply #32 on: August 27, 2007, 11:06:53 PM »
Sorry if I sounded too harsh. I came back to add: Iíve been having a difficult time lately. After reading Marks response, it made me re-think your question and I found the following writing about getting older that I filed away for just this kind of occasion. ďEnjoyĒ


Getting older.

The other day a young person asked me how I felt about being old.
I was taken aback, for I do not think of myself as old. Upon seeing my
reaction, he was immediately embarrassed, but I explained that it was an
interesting question, and I would ponder it, and let him know.

Old Age, I decided, is a gift. 

I am now, probably for the first time in my life, the person I have always
wanted to be. Oh, not my body! I sometime despair over my body, the wrinkles, the baggy eyes, and the sagging butt. And often I am taken aback by that old person that lives in my mirror (who looks like my father!), but I don't agonize over
those things for long.
I would never trade the amazing friends, the wonderful life, my wonderful memories for less gray hair or a flatter belly.

As I've aged, I've become kinder to myself, and less critical of myself. I've
become my own friend.
I don't chide myself for eating that extra cookie, or for not making my bed, or for buying that silly cement gecko that I didn't need, but looks so avante guard
on my patio. I am entitled to a treat, to be messy, to be extravagant.
 
I have seen too many dear friends leave this world all too soon; before they
understood the great freedom that comes with aging.
Whose business is it if I choose to read or play on the computer until 4 AM and sleep until noon?
I will dance with myself to those wonderful tunes of the 60&70's, and if I, at the same time, wish to weep over a lost love ... I will.

I will walk the beach in a swimsuit that is stretched over a bulging body, and
will dive into the waves with abandon if I choose to, despite the pitying glances from the jet set. They, too, will get old someday.
I know I am sometimes forgetful. But there again, some of life is just as well
forgotten. And I eventually remember the important things.
Sure, over the years my heart has been broken. How can your heart not break
when you lose a loved one, or when a child suffers, or even when somebody's
beloved pet gets hit by a car? But broken hearts are what give us strength
and understanding and compassion.

A heart never broken is pristine and sterile and will never know the joy of being
imperfect.
I am so blessed to have lived long enough to have my hair turning gray, and to
have my youthful laughs be forever etched into deep grooves on my face.
So many have never laughed, and so many have died before their hair could
turn silver. As you get older, it is easier to be positive. You care less about what
other people think.
I don't question myself anymore. I've even earned the right to be wrong.
So, to answer your question, I like being old! . It has set me free.
I like the person I have become. I am not going to live forever, but while I am still here, I will not waste time lamenting what could have been, or worrying
about what will be.
And I shall eat dessert every single day. (If I feel like it)!


« Last Edit: August 27, 2007, 11:19:17 PM by Terry »

Offline AlanBama

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Re: Long Term Survivors: Help!: How do you do it?
« Reply #33 on: August 27, 2007, 11:17:47 PM »
that's a great post Terry, thanks for sharing that!   I may print it out and save it.

hugs,

Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline libvet

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Re: Long Term Survivors: Help!: How do you do it?
« Reply #34 on: August 28, 2007, 12:27:53 AM »
The only thing you can do is carry on.  There aren't any days when I don't think about having HIV.  How can there be? Every night at 8pm, I visit my pill box and it's hard not to think about why I am there.

But it does get easier.  The first couple of months, I was a basket case eating ativan like candy and it was an effort just to do the most ordinary things like washing dishes.

Each day it became a little easier to find that joy in life that I was missing and would never have again.   Now, it's just a thing.  A thing I'd like to be rid of, but it's not nearly as awful as my own fears made it.

Just remember, you can make a choice to fight and live and live well and tell fear to take a hike.   Right now, it probably seems like the center of your existence, but ask yourself, "Am I going to allow this virus to take everything away from me or am I going to face life with determination and make the most of life whether I live 6 months or 60 years with this disease?"

That's the advice from someone who's had HIV for 21 years and been on meds for almost 8 of them.

Good luck and hugs....

Michael


Offline Falkore

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Re: Long Term Survivors: Help!: How do you do it?
« Reply #35 on: August 28, 2007, 03:31:49 AM »
Greetings  LatinAlexander,

Welcome to the forums.  We are all glad you are here.  I am not quite a LTS yet, having only been diagnosed 2 years ago, but I can see myself coming closer to their state of mind.  I have this virus, however it does not control me.  There are days that I don't even think about the virus until it's time to take my meds.  However, it was not always like his.  When I first tested positive I freaked out.  I was living with someone who I thought would be "the one."  I thought we would last forever and we had our whole lives to plan.  We had been talking about buying a house together in the future, raising a family, all the things that "normal" couples do.  Well, my world almost fell apart when I found out about my status.  I felt like, "How can I think about getting a mortgage, I won't be around long enough to pay it off, and I can't leave my husband/boyfriend/partner/cat with the mortgage payments if I die.  I can't make that kind of dedication..."

The same thoughts run through many of our minds when we test positive.  But after the kind words of a few good friends, a slap or two upside the head from my boyfriend, and time... just time, I realized the truth.  I will be here as long as I can.  I will live my life as if I do not have this virus, with the exception of making a few small changes to my every day routine.  I now take my meds every day, before I hated taking medication for ANY reason, but I have only missed one dose since starting Atripla a year ago.  I am making plans to finish my education, pay off my debts, support my family, and find the man I want to spend the rest of my life with (unless I already have).  When I first found out, every other minute was spend fighting the urge to cry because I felt like a huge brand was across my forehead saying "I HAVE HIV!"  Now, I live every day expecting to live to 99... if I get any older than that I'm going to shoot myself.  Just kidding.  I don't let the virus take control of my every day life.  Yes, it is there in my body... but it is still MY body.  I still control what goes on inside it (to a certain extent) and I still plan on living for a very long time. 

It will take time, but day by day you will find yourself fearing less and less the virus that is now inside your body.  One day you will look up as you lay your head down to sleep and realize one thing... "I have not thought about my HIV at all today," and you will smile because you no longer fear it. 

OK, this rambling has gone on long enough.  Thank you for listening (reading) and I wish you the best. 
« Last Edit: August 28, 2007, 03:36:28 AM by Falkore »
"Ain't no shame in my flame"
Date:          CD4:     VL:
10/02/05     568       2,070
11/18/05     541       2,970
02/17/06     442       4,720
04/17/06     510       1,100
07/12/06     391       3,050
Start Atripla
09/22/06     595       Undet.
01/18/07     562       Undet.
05/25/07     540       Undet.
09/26/07     531       Undet.

Offline buca45

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Re: Long Term Survivors: Help!: How do you do it?
« Reply #36 on: August 28, 2007, 10:15:18 AM »
Falkore and Terry, just wanted to commend you on your posts as they more than any others offer a great deal of comfort and truth that it takes to get on with life after hearing your positive status
I hope you have received some positive thoughts about how to deal with this life Alex.
Keep your head up!!
"Love and Laughter and Happiness Ever After"

Offline aztecan

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Re: Long Term Survivors: Help!: How do you do it?
« Reply #37 on: August 28, 2007, 10:51:48 AM »
Terry,

That was a wonderful post. I hope you don't mind, but I printed it out and am going to share it with some people here who, I believe, will get as much out of it as I did.

Thanks again.

HUGS,

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

Offline LatinAlexander

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Re: Long Term Survivors: Help!: How do you do it?
« Reply #38 on: August 28, 2007, 03:12:54 PM »
To all of you
HUGE THANKS!!

I haven't replied to my oown thread, mainly because I spent some days in a deep depression. (actually tried to sleep 22 hours a day, just not to think).

But slowly, very slowly, I am picking myself up. Like trying to put the pices again together. Do I feel better than when I was just diagnosed? Well, I cannot say for sure. Perhaps am I getting a little bit used to the idea of this vius? Maybe. I woke up again today. I feel like I have been struggling in a fight , a constant one, with myself, with my thougths . Like I need to try to go to my office (I called sick), and try to create a life, or go on with it.

I guess it will be a very long process. I hope I can survive it. I will admit , that I have cried, read all your posts, and cried again. You are right. Taking it one day at a time makes it better.

Thank you guys, gils, and gays. God bless you all for your mercy.  Thank you for letting me see that perhaps I do have a chance after all. For helping me see settle the dust (even when that bastard may come up again)

Alex
Poz since Jul 19 2006
Initial numbers : CD4-250 VL 3500
First labs after HAART (Dec 04-2006) : CD4-432 VL-<40 (Undetectable)  cd4%=25.11%
Started HAART: Combivir+Efavirenz Aug 26 7:38 pm
Feb 08 2007 - Gradually stopping HAART cause of Myalgia. Protecting Efavirenz. Stopped Efavirenz, ahead with Combivir....
February 17 Combivir stopped.
April 3 -07 : Started ddi+3tc+efavirenz...
Gay and positive (What a lack of Identity...:) )
Looking for my Ben....

Offline Pilot

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Re: Long Term Survivors: Help!: How do you do it?
« Reply #39 on: August 28, 2007, 06:56:51 PM »
Well after pondering the question, it suddenly dawned on me that most people on tv are always trying to get people to send them money for answers to questions like this.

So in the true entreprenurial spirit, I will gladly tell anyone who desires the secret of how I have survived this long in exchange for 89.95 plus shipping and handling.  And of course if your not happy with your purchase I will gladly refund the entire amount less shipping and handling.

     89.95
     40.00 shipping and handling
     --------
   129.95

Purchase must be returned within 30 days or no refunds.  Cash only please.
   

Offline wishihadacat

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Re: Long Term Survivors: Help!: How do you do it?
« Reply #40 on: August 28, 2007, 07:48:16 PM »
I can't tell you how or even if I do it, but I can tell you how I've done it: good fortune, good doctors, good humor, good friends and I'd hope more often than not, good choices.





contracted HIV in 1979 or 1980.
« Last Edit: August 28, 2007, 07:49:51 PM by wishihadacat »
Your name here  X_______________

Offline lilguru

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Re: Long Term Survivors: Help!: How do you do it?
« Reply #41 on: August 29, 2007, 12:28:51 PM »
This year marks my 20th year.  Has it been easy?  No.  Has it been fun?  No.  Interesting?  Yes.  I think that the key to "living with it" is to keep a positive attitude about it.  There are several key thoughts that I believe keep me going.  I believe that when we have a "dis-ease" it is our body's way of telling us that there is something in our thoughts that must change.  It might be negative thoughts about who we are, unhappy at work, not growing spiritually as one should.  The list is long, but one has to stop and think about what changes can be positive.  Don't fight the disease.  Embrace it.  Let it become just another part of who you are.  It doesn't have to be negative.  When we embrace it, it becomes powerless to controlling our life.  Love yourself above it all.  You are perfect just the way you are.  Disclosure is probably one of the best ways to "weed out" people in our lives who are superficial and care only about themselves.  If I disclose to someone, I expect a hug and words of comfort and support.  If that is not the reaction, those people are out of my life.  Who needs that?  It is difficult at times and I am not the best in the world when it comes to relationships and the disclosure issue.  It is easier to "cocoon" and not deal with it, but I am blessed to have found a lot of friends who love me just as I am.  Not for any other reason.  Treatment issues arise and again I am not the expert in the field, but I take my meds routinely and don't miss (mistakes happen).  Keep your chin up.  You are living at a time when there are meds to keep us from getting sick.  When I was told I was positive, there was nothing to take.  My friends were dying. I expected to die.  God had different plans for me.  I made through those really frightening and scary years.  It is all in your attitude.  Don't be afraid.  It's okay.  Like a mole on your butt.  No big deal.  Best of health to you, I hope that you find many loving people around you. 
September 1987 - HIV+

Offline GDMatDSM

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Re: Long Term Survivors: Help!: How do you do it?
« Reply #42 on: August 29, 2007, 03:04:10 PM »
It is some 20 years since I was told I was HIV positive.  I was told over the phone.  There was little by the way of support groups at that time in this mid-western state.  At that time it seemed everyone died within a very short time of diagnosis.  Many had difficulty taking the only medication that seemed to help, AZT. 

My, oh my, have times changed.  There are a multitude of drugs that are easier on the body to take, community support mechanisms, assistance of various kinds.  But the bottom line is you still have to live with knowledge that you are HIV positive.  You most likely will have to take some form of medication for the rest of your life, and you owe it to others to discuss your most private health issues early in your relationship or at least before having sex.  This may be particularly difficult for the gay male. 

All of these will cause you to alter you life in some way from what you had planned.  That may be good or bad, it is for you to make those choices.  My first advice is to educate yourself.  The lessons and information through POZ is a good start.  The second is involve yourself in something larger than yourself.  A local support group, volunteer for a charity, become an activist.  This will help occupy your mind.  With time HIV and living with HIV will not dominate every thought you have.  And three, don't stop dreaming.  Your dreams may have to change, adapt but it is your dreams that directs your foot steps today and lead you to a happier future. 

It gets better.  Life should get better and yours can get better, also.

Gary

Offline steps

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Re: Long Term Survivors: Help!: How do you do it?
« Reply #43 on: August 29, 2007, 05:38:22 PM »
When I learned of my own positive statis it was less then a year after having lost a lover of more then 19 years.
That was more then 18 years ago.during a time before the newer meds became available.
It took another 16 years before my t-cells became low enough for me to start medications.
The hardest part over the years for myself is the lose of independence meaning that I have become job locked in order to pay for the overly expensive medications.
How have I dealt with this?
A lession I learned is to realize my own mortality in so doing I told myself "That if this is to be the last of my life then I will be true to who I am harm no one and listen and to learn from others, for those who need an ear I hope I will hear them."
Do I dream of owning a home becoming rich sure those thoughts enter the mind but they do not linger for very long.
Have I given up asking for pity or drift into a sea of depression?
If I had I would not have made it this long.
It has become a strange kind of gift only when I came to know of my own possible end have I learned to start a better beginning.
I have more friends more enjoyment and a better sole mate then I could of ever found before.
I wish you luck.it is not an end it is a beginning.

Offline mesu

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Re: Long Term Survivors: Help!: How do you do it?
« Reply #44 on: August 30, 2007, 10:15:35 AM »
alex

i m feeling the same way you are feeling now...i was diagnosed on august 6, and i have not yet got the result of my CD4 counts and VL....i feel very uncertain and insecure... i can sleep at night with no problem, but every morning when i wake up, it is like waking up to a nightmare, remembering i am +ve.  then i try not to think about it...but deep inside, i am afraid, i have the fear...not only because of the virus, but also because of my future, and whether i can trust anyone anymore.

i am glad to have found this forum where i got a lot of support and encouragement from....it is amazing. 

you are not alone...we are all here for you.

mesu
Jan/Feb 07 - infected :(
Sept3: cd4 162; 13.5% VL 24,000
Oct5: cd4 68 13.6%
Nov6: cd4 205  14.64%
Dec10,07: cd4 188  15.67%  VL: 9900
FEB15,08: cd4 242 18.62%
Mar10/08: cd4 219 15.64%  VL: 7300
May26,08: start Truvada and Sustiva
July 18,08: cd4 255, 18.50%, VL undetectable (<75)
Nov 4,08: cd4 380, 27.14%,
Feb 6,09: cd4 296, 22.7%,
May 26: cd4 351, 27%,
Aug 28: cd4 310, 28%,
Dec 2009: cd4 321, 35.67%,
March 2010: cd4 325, 32%,
June 2010: cd4 385, 29.5%,
Sept 2010: cd4 368, 30.75%,
Feb 2011: cd4 431, 43.1%,
Jun 2011: cd4 433, 30.93%,
Sept 2011: cd4 435,  36 %,
Jan 2012, cd4 467, 33.36%
May 2012: cd4 421, 38.21%,
Sept 2012: cd4 393, 30.23%,
VL: undetectable since July 08

Offline hudstar

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Re: Long Term Survivors: Help!: How do you do it?
« Reply #45 on: September 11, 2007, 01:54:28 PM »
Is long termers the same as old timers???? LOL.
You are experiencing normal reactions. How would your life be if you never tested positive - that you will never know and should not concentrate on. Maybe you would have had a bad relationship and stayed in it, maybe you would have not worried about your life and just plodded along aimlessly..... to ask this is to live in a constant state of maybe or what ifs while your life passes by. You have entered into a world with much information on HIV and a multitude of drug treatments. You will likely never experience a death due to AIDS or live in a world filled by hysterical fear and extreme homophobia. Your boss cannot sack you because you are HIV and it is an offence to refuse you medical treatment due to your status. I was 22 when I experienced all of the above and I was told I was going to die within a 3-4 year period. If I found out today my reaction would be much different however the process of shock and fear would remain the same much like you are feeling. It is human nature to survive and we all have it. You will find it in yourself to form your own character and to live with HIV. Never fall for the stigma surrounding HIV. It can erode your self worth. Avoid stress at all cost as this is number one enemy when it comes to HIV. Ask any of us "long termers". Stress plummets t-cell counts and heightens viral loads without a doubt. Go to at least one support group. Never blame HIV for life's other problems like bad love affairs or feeling bad if you get the flu. The human body is pretty resistant. Lastly, definitely have dreams, desires or a plan for life. Do something you never thought of doing like University or rock-climbing. One thing that helped me was I told myself that every minute is going to pass regardless of how I feel or what I do. You learn to make those minutes good ones or at least ones that do not cause you pain or fear. As of yet we have no cure. No doctor will ever tell you that you will not die - thankfully you will live much much longer due to HAART and likely into old age. I know, I was lab rat for most pills now on the market and my viral load is undetectable. It is not going to be easy. Be easy on yourself - you have a network out there. Last word of advice here.  I know of a very handsome guy that was around during 1990. I recently heard (two months ago) he has been hiding in his flat for years refusing meds and thinking the world did not change since those awful years. He is suffering preventable illnesses because his sadness overtook him and has taken him a long time to break down a healthy, attractive and vibrant boy.
diagnosed 1988
POZ personals - hudster

Offline PRMike

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Re: Long Term Survivors: Help!: How do you do it?
« Reply #46 on: October 06, 2007, 07:42:05 AM »
Hi Alex, I just finished reading all the post and this month makes it 27 years that I have been positive, now the only advice that I will say is very important is to stay away from using Drugs, they will hurt you more than you can imagine. I beleive my first year was the worst because I was in denial and scared that I would die but I found a Doctor and got on Meds and to be honest with you I do not know how I survived for so long because I was using drugs but some how I did good until 2002 when I got very depressed because of my break up with my wife of 23 yrs of marriage and using Drugs did not help and I ended up in a coma for 14 days after an overdose of about 100 pills and shooting up a gram of Crystal Meth, my T-cells were 6 and my Viral load was over 400,000 and I weighed 99 lbs in short I was dying but there a few people that told me that God had a purpose for me to live and that I had to forfill that purpose and at first I told them that I did not want to hear that but after the fifth person said the same thing I just said Ok God I leave it up to you and I went into a Rehab and have been clean & sober now for 5 years and my T-cells are in the 500's and I have been Undectable ever since then, I do not think about my condition, I only try to live a decent life now and I hope that I will find a woman to share the rest of my life with which my Doctor says can be another 20 years so in short just enjoy your life and do not dwell on what has happened yesterday is gone today is now and tomorrow will be another day..  It is my pleasure to know you and you have a friend here and I am sure that all the people that responded to you all feel the same ok bye for now always PRMike
PRMike

Offline sureshot02

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Re: Long Term Survivors: Help!: How do you do it?
« Reply #47 on: October 11, 2007, 04:23:00 PM »
Hi Alex

I am new to this site but by no means new to the Virus..  It still at times is hard to deal with the fact that I have AIDS but you have to get up in the morning and put your pants on just like everyone else.  When I found out I had HIV back in the 80's it was like a death sentence.  I would walk down the street and think that everyone is looking at me because of the virus.  Back than the meds worked sometimes (as we all remember) you would have to take AZT that was like drinking gasoline,than we had novir before it was in a capsule they used to make me sick just taken them..  I remember waking up at 3 am to take the AZT and saying to myself is it worth it I'm just going to die anyway why prolong it.. Than all these new drugs started comming out and gave me a little more hope. Well to make a long story short and it may sound harsh but this is something we have to deal with the rest of our lives so just take one day at a time don't be afraid to find just one friend that is willing to listen and not pass judgment on you.. 

When I found out I had AIDS ( I had 2 t-cells and vl of over 500,00) in 1990 I was in the hospital with PCP was told I would never walk out of there again that they had done all they could do for me. Was on multi IV's with different meds they even gave me a pain med even though I wasn't in any pain had the ole feeding tube. Was read my last rights 4 times to date but I was not ready to give up yet.. I was on disability at that time due to being sick all the time. Was in the hospital for over 8 months had lost my family and friends at the time because of the virus..  Everyone thought they would catch it from me.  Well now it is the year 2007 I have a fulltime job and LOTS of friends due to sites like this on.. I do still have MULTI problems from all the meds I have taken over the years.  But I get up in the morning look in the mirror and say it's going to be a wonderful day nothing is going to spoil it for me, in shorts live your life to the fullest and remember that you are never alone out there that the person sitting next to you could have it too...  Who would have thunk that 17 years later I would be in better health than I ever thought possible  886 t-cells and  a VL that is undetectable..  Well hope this has helped you out a bit

Don

Offline PRMike

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Re: Long Term Survivors: Help!: How do you do it?
« Reply #48 on: October 12, 2007, 08:27:29 AM »
Hi Don I could of not said it any better, it was like reading my life except that I was trying to make the end come quicker by using drugs and in 2001 I ended up in the hospital from an over dose and I awoke after 14 days in a coma and after a short stay I was released to a Rehab program which saved my life by showing me how to stay clean & sober and showed me that we have to take it one day at a time and yesterday was the greatest day I have had because I found my son after searching for him for 28 years so what I am saying is you are so right with your advice.
 a new friend PRMike bye
PRMike

Offline sureshot02

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Re: Long Term Survivors: Help!: How do you do it?
« Reply #49 on: October 15, 2007, 10:48:00 AM »
Thanks PRMike..

 I don't want to mislead anyone. I still have my regular trips to the ER even though I'm healthy..  I too have tried to end it but I was a cutter (never got into the drugs) I have had to have 27 surgeries in  the past 10 years because of my stupidness..  I do feel better about myself now and would never think about doing any of that crap again.  Back in 1993 I tried to commit suicide I bled out 65% of my blood and than was found by the person that lived below me at the time (she said she came up because something was dripping from her light fixture)..  Was told another 15 min and it would have been all over for me..  I don't want anyone to think this is a easy road to go..

 I still to this day don't have anything to do with my family, I guess you could say I am just being mean even though they have tried to contact me.. I am still very hurt from what they have done in the past and just can't get past it...  When my father died in 1985 I was not allowed to go to the funeral..  My family had a restraining order put on me so I  couldn't go within 100 feet of them.. I don't even know where he is buried.  I do at times think I should contact them but than I think of everything I have been through and just can't do it..  I do know I have 5 nephews and a couple nieces that I have never met,couldn't even tell you there age..  Maybe some day I will get past all of it but for now I just can't bring myself up to do it.. I do go for counseling twice a week and what a help that has been..  I would tell everyone to go it is such a help..   

One thing everyone has to remember is that times have changed and people are much more educated about the virus..  There are so many new drugs out there that don't make you feel like the old ones did.  I am now on the new one called Atripla it does come with side effects but nothing compared to the others..  This is the first time in at least 10 years that I have only had to take one pill..  My last regime was 13 pills twice a day. Was on that for 5 years..
 Well I have to close for now but will be back tonight have to go to work now..  :)  Never thought I would be happy about saying that..  LOL

Don

 


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