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Author Topic: what the # is so positive about being positive  (Read 10602 times)

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Offline zeb

  • Member
  • Posts: 172
what the # is so positive about being positive
« on: March 05, 2007, 01:28:01 PM »
"with treatment you can make it to your golden years"

"hiv has made me a better person"

"hiv helped me to make the right choices in life"

"nowadays hiv is no big deal"

"Nowadays no one of the new infected on treatment dies of aids"

"HIV is a chronic disease, you don't die of it, you live with it"

"You still are thinking about these images of the pre HAART era"

Sound like HIV is pretty cool huh. Like it's a new life style you can live with as long as you can afford the pills and pop them religiously.
So no big deal! Let's pack our stuff and go home as if nothing happened. Our lives are positively enhanced!

One question to end this posting with: Why am I so worried, scared and sad? Can anyone please give me the answer?

Offline Ihavehope

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  • Posts: 1,366
  • Yes, I'm a cry baby, AND WHAT?
Re: what the # is so positive about being positive
« Reply #1 on: March 05, 2007, 01:33:05 PM »
My humble answer is:

You and I and many people who are poz are worried and scared because we don't know how effective the medication will be in the long run and how severe the side-effects will be long-term. Stigma, wasting and resistance to meds are some of the fears many of us share. The fear of the unknown.
Infected: April 2005
12/6/06 - Diagnosed HIV positive
12/19/06 - CD4 = 240  22% VL = 26,300
1/4/07 - CD4 = 200 16% VL = ?
2/9/07 = Started Kaletra/Truvada
3/13/07 = CD4 = 386 22% VL ?

Offline Longislander

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  • Posts: 2,486
Re: what the # is so positive about being positive
« Reply #2 on: March 05, 2007, 01:37:41 PM »
Hi Zeb,

All that you quoted were basically statements made regarding the positive side of being diagnosed today, as opposed to many years ago. We all know there is the negative side to this story as well.

You're newly diagnosed, and your fears are still great, warranted, and expected. As Philly states it's the fear of the unknown. As you continue to live with HIV, the fears will remain, but they will be less severe. At least they are becoming so for me.

Peace~
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 Zanarkand

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  • Posts: 96
  • All Your Base Are Belong To Us
Re: what the # is so positive about being positive
« Reply #3 on: March 05, 2007, 01:40:02 PM »
100% On the Mark

But Don't Fear
And Don't Be Scared
Just Remember That
The Closer You Get To The Light
The Larger Your Shadow Becomes
All Your Base Are Belong To Us

Offline antibody

  • Member
  • Posts: 525
  • "every man thinks his burden is the heaviest"
Re: what the # is so positive about being positive
« Reply #4 on: March 05, 2007, 01:48:12 PM »
positive affirmations help to a big degree.
Timbuk      <50/ 794  CD4 10/06 
                 <50/ 1096 CD4 3/07
                 <40/ 1854 CD4 4/09

Started Atripla  7/14/06
Switched to boosted Reyataz Truvada 3/28/07

*Ask me about Medical Marijuana and how it can help you!*

Offline David_CA

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  • Posts: 3,246
  • Joined: March 2006
Re: what the # is so positive about being positive
« Reply #5 on: March 05, 2007, 01:49:56 PM »
Longislander has it right, as far as I'm concerned.  I used to worry about things like cancer, having to have (bodily) limbs removed, etc.  Now, I just worry a bit about what the future holds for HIV and me, but mainly I worry about mowing the grass, paying bills, not having time to get things done, etc... just day-to-day activities. 

I think for most, the initial feelings are extreme, but do subside a lot in time when one realizes one's not going to die any time soon. 

I can think of a few things that have happened to me because I'm positive.  I'm a lot closer to my family.  I can talk about labs, OI's t-cells, etc.  The same goes for a few close friends.  I've met a few people that are poz®.  What's funny is that, when they disclose to me expecting me to say that I'm not interested, I tell them I am too and usually get a big hug.  It's almost like we feel a sense of closeness, as stupid as that may sound.

There's really nothing good about being poz®, but there ARE positive things that can come from it.

David
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline aupointillimite

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  • FUS DO RAH!
Re: what the # is so positive about being positive
« Reply #6 on: March 05, 2007, 01:52:25 PM »
One question to end this posting with: Why am I so worried, scared and sad? Can anyone please give me the answer?

Because, as things go, this is still a very new disease... and what it boils down to is... they don't really know. 

If all the statements you quoted were true, there'd be no need for forums like this.

I'm sorry if this sounds harsh, I don't mean it to be, not at all.  I live with HIV, too... and I live with the constant apprehension of what the damn thing means... but I don't think any favor is being done when they try to tell us how manageable this virus is when, in fact, it's still very serious.

Instead, they should try to better prepare people for what I've been learning over two years is a difficult road.  It's not impossible.  But it's hard. 

David is right... I've pulled a hell of a lot of good things from being poz... but nothing good ever comes from things being easy or manageable. 
Your tastebuds can't repel flavor of this magnitude!

Offline woodshere

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  • ain't no shame in my game
Re: what the # is so positive about being positive
« Reply #7 on: March 05, 2007, 02:14:53 PM »
One question to end this posting with: Why am I so worried, scared and sad? Can anyone please give me the answer?

Because no matter what people who are positive tell you, what the research shows and what the diagnosis about our future is you gravitate to the worst.  Let me ask you this, how is your health?  Do you have any OI's, what is your CD4 count, Viral load, are you on meds.  Also what have you done to combat these fears?  I have read all of your posts and some of them are very serious even mentioning suicide.  Many, myself included have encouraged you to seek help.  Have you done this?

Life is what you make it.  If you choose to worry yourself silly about all the worse case scenarios than do, but I choose to be positive and have faith in the science and think of the good possibilities ahead in the area of treatment.  I encourage you to also.

Woods
"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it."   Nelson Mandela

Offline Peter6836

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  • Posts: 391
  • Me and my Granddaughter Noa
Re: what the # is so positive about being positive
« Reply #8 on: March 05, 2007, 02:29:01 PM »
One question to end this posting with: Why am I so worried, scared and sad? Can anyone please give me the answer?
I think you are the only one that can answer that question. I agree with some of what you said and it angers me when people make cavalier comments about being HIV+ or having AIDS. It does affect us all differently. But at the same time there are definite consequences to having a negative attitude as there is to having a positive one.
I must agree with Woods when he asks you if you have sought out some help to deal with your fears, and anxiety. I encourage you to seek out some sort of support, and hope that your fears, scare, and sadness subside.
Peter

Offline budndallastx

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  • Posts: 463
Re: what the # is so positive about being positive
« Reply #9 on: March 05, 2007, 02:33:45 PM »
Being HIV+ sucks but if you just dwell on the negatives, then your quality of life is going to be nil.  Having a positive outlook helps people cope with their disease and studies show fighting disease is as much a mental fight as a physical one.

Sure we can sit in our homes and wait for something to happen or we can get out and live life.  It's that simple.

Tom


 
Meds since: 11/20/2006
Sustiva / Truvada
12/08/2008 VL:<48 CD4 622 (38%)   
9/8/2008 VL:<48 CD4 573 (30%)
5/2008 VL:<48 CD4 464 (30%)
1/2008  VL: <50  CD4 425(28%)
9/2007   VL: <50  CD4 465 (27%)
6/2007   VL: <50   CD4 443 (26%)
3/2007  VL: <50   CD4 385 (25%)
12/2006 - VL: <50   CD4: 384 (25%)
11/2006 - VL:  22K  CD4: 208 (18%)

Offline sweetasmeli

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  • Love what you are...
Re: what the # is so positive about being positive
« Reply #10 on: March 05, 2007, 02:41:40 PM »
Hi Zeb
Sometimes, admittedly, we all just have to look really really really carefully to find that silver lining!

I suspect not even one person here will deny that being diagnosed hiv+ wasn't a shit hand to be dealt.
I'm quite sure each and every one of us stands united on that particular matter.

However, how we play the hand we are dealt will vary from person to person.

Why am I so worried, scared and sad? Can anyone please give me the answer?

Because you are having a perfectly natural reaction to something adverse that has happened to you.

But the question now is: Where do you go from here?

I look at your choices like this:

A) You can either allow your worry and fear and sadness to all-consume you, over the coming weeks, months, years…in which case, it is highly possible that, in time, you will eventually spiral down into a stress-induced pit of depression that will be even harder to climb out of. (Been there; don’t recommend it!) Not to mention, the negative impact the stress/depression will have on your overall health.

Or

B) You can do everything possible in your power as a human being to prevent (A) from happening.

I can share with you the stuff I’ve done/I do to help myself and I’m sure many others here would be willing to share their experiences too. Just say the word…but we can't actually do the work for you. That's all down to you.

Zeb, I'm sorry if this sounds harsh. But you do have a choice. You may not have had much choice in what happened to you but, as human beings, we all have a choice about how we respond to the things that happen to us.

Like both Benj and David (and now others, cos I'm such a slow typer!) have pointed out: although there may be very little or actually nothing ‘poz’ about being ‘poz’, good things/positive things can be found even from the shittiest of situations, if we choose to look for them.

I personally hate being hiv+; I truly truly despise it. But I don’t dwell on that feeling. Instead I focus on all the good that has come out of my diagnosis; I focus on the positives, the silver linings. I have to; it’s one of my blueprints for a happy fulfilling life. It's not easy; it takes constant daily practice. Just like getting into a healthy eating regime or a healthy exercise program, it's about changing your habits and constantly practising new ways of thinking and behaving. And some days are harder than others. But I revel in the fact that, as long as I have all (or most!) of my faculties, freedom of choice in my reaction to every given situation is the one luxury that nobody or nothing can take away from me.

The way I look at life is this: if we can choose to be miserable, we can just as easily choose to be happy.
Everyone’s silver linings are different. You have to find what yours are.

Like others have suggested, seeking some help you deal with your fears and anxieties could be a good place to start.

Kind thoughts
Melia
/\___/\       /\__/\
(=' . '=)    (=' . '=)
(,,,_ ,,,)/   (,,,_ ,,,)/ Cats rule!

The difference between cats and dogs is that dogs come when called, whereas cats take a message and get back to you.

Yeia kai hara (health and happiness) to everyone!

Offline Ihavehope

  • Member
  • Posts: 1,366
  • Yes, I'm a cry baby, AND WHAT?
Re: what the # is so positive about being positive
« Reply #11 on: March 05, 2007, 02:44:54 PM »
Just wanted to let everyone know that each day I read the forums I learn more and more about how to cope with this disease. Without you guys I honestly think I would be sitting alone in a dark corner waiting for a miracle. For those who give advice to many of us newbies thank you from da bottom of my lonely heart.
Infected: April 2005
12/6/06 - Diagnosed HIV positive
12/19/06 - CD4 = 240  22% VL = 26,300
1/4/07 - CD4 = 200 16% VL = ?
2/9/07 = Started Kaletra/Truvada
3/13/07 = CD4 = 386 22% VL ?

Offline jkinatl2

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  • Posts: 6,007
  • Doo. Dah. Dipp-ity.
Re: what the # is so positive about being positive
« Reply #12 on: March 05, 2007, 02:51:53 PM »
"with treatment you can make it to your golden years"

"hiv has made me a better person"

"hiv helped me to make the right choices in life"

"nowadays hiv is no big deal"

"Nowadays no one of the new infected on treatment dies of aids"

"HIV is a chronic disease, you don't die of it, you live with it"

"You still are thinking about these images of the pre HAART era"

Sound like HIV is pretty cool huh. Like it's a new life style you can live with as long as you can afford the pills and pop them religiously.
So no big deal! Let's pack our stuff and go home as if nothing happened. Our lives are positively enhanced!

One question to end this posting with: Why am I so worried, scared and sad? Can anyone please give me the answer?


Sadly, this is the divide between those of us who have experienced the reality of AIDS and those who have not. And there will ALWAYS be a divide.

Always.

Because those infected now stand a great chance of responding better to the revised meds than those infected ten, twenty years ago who are limping along.

Those with severe illnesses are prone to being more crabby and less tolerant, especially when they see themselves as marginalized by the healthier crowd. The sick are an embarrassment. They are proof that the BS often doled out by doctors is simply that. AIDS, as I mentioned in another thread, has become a character flaw.

Sick? You must have done something wrong, or bad. Like not being adherent to the meds, or eating the wrong food, or not taking whatever vitamin is currently the hottest thing. Whatever.

At best, there seems to be a pseudo-tolerant pity towards those ravaged by the illness.  So long as they keep their place.

The sad part is, the tragic thing is, when all that sunshine and bubblegum rhetoric turns out to be utter crap, when med regimens fail, when side effects are disfiguring and life-eroding, those who glibly and easily dismissed AIDS as "over" on the advice of their doctors and the media have no where to turn.

Having alienated those with real working knowledge of the healthcare system, of the opportunistic infections and how/when to treat them, of the legal and insurance and poilitical minefields which still carpet the HIV landscape, people are forced to unnecessarily put themselves through agony, rediscovering the truth of their condition and their circumstances.

I can only speak for myself. I don't forget insults as quickly as I used to. I don't forget the personal attacks or the insinuations about my character. And maybe that's my incipient character flaw. I can forgive, because I have to. But I am not as big a person as others here, who offer a hand in help even after it has been savagely bitten. Dementia? The crankiness of cynicism? The crabbiness of dying? Who knows. That's just me.

And no, it's not everybody, or even anybody all the time. I won't paint all newly diagnosed with such a broad brush. But it's a trend I noticed since the POZ merger, where suddenly HIV is "sexy," whereas AIDS is not.

It's a glossification of what should essentially be a forum for those who need it.  And the problem with the glossy, nothing sticks to it.

I know how gut wrenching it is to get a technical AIDS diagnosis. I do. Been there, if anyone cares.

I know how scary it is to be poor, and thrust in a system where I am not allowed to STOP being poor, because my medications alone run several thousand dollars a month. And the only way to get the medical care I need is to remain on the system - or miraculously land a six figure job and transition out. All this without knowing from month to month whether I am going to pull through.

I know the shame of food stamps.

I know the frustration of inept ASOs who can't help me any more than I, armed with Google, can. I know the fury of calling a social worker and telling HER where a person with AIDS can get a reduced price on an eye exam, since she is too incompetant to research this herself. I also know the helplessness of relying on that SAME social worker to sign forms that allow me to continue to survive.

If that's not powerlessness, I don't know what is.

So yes, I am quite familiar with the quotes mentioned in the first post of this thread.I have seen those quotes stated with certainty and no irony here on these forums. And each time, it hurts. Because I know it's a lie. And, like the Greek character Cassandra, I know my predictions will not ever be believed. So I quit making them.

Quit offering a reality based research-substantiated support because it just opens me up to flamebaiting and personal attacks. And frankly, I'm done with that.

Today I feel as though the bullies have won. That could just be the AIDS talking.

and yeah, I know a lot of these statements are simply the equivalent of walking through a graveyard, whistling. People don't want to face the overwhelming fearo f being diagnosed with, frankly, one of the worst pandemics from a medical, stigmatic, societally isolating, financially devestating standpoint to hit modern times.

It was mentioned in another thread that I contribute to this divide by pointing it out. By stating my perspective on it. Sorry about that. And for anyone who hates my postings, the ignore button works pretty well.

But I feel I am justified, and correct in my assumptions. That part of my brain, at least, is not so riddled with holes that it cannot process information.

Thing is, one by one you will see those quotes, those illusions shattered. And people will be heartbroken when they receive an AIDS diagnosis, or get an OI despite having great numbers. Or fail to find love and acceptance, or find themselves suddenly and desperately poor. Or in terrible pain. And suddenly those of us who were considered "downers" will find ourselves suddenly valuable, albeit briefly.

And the sad truth is, more of us than not will lend a hand to help, from our sick beds and our wheelchairs, from our own isolation.  Because that's what people do.

AIDS is not a character flaw. Marginalizing others, is.

Zeb, if you are worried, than you are smart. You question blanket statements. You see the reality around you, and understand that neither the rosiest nor the bleakest pictures are truth. One is meant to distract you, the other is meant to undermine all hope.

Despair and denial are both atmospheres which we cannot breathe for long. Not without significant damage. Somewhere between the two, we can find our own way. Your journey with HIV will be different than my own. And mine is different than anyone else's. A virus which depends so much onthe genetic structure of the host and random mutations would have it no other way.

As long as you question paradigms, both positive and negative, you will be able to maneuver this rocky landscape.

You mention suicide, you mention despair. Your posts have been unilaterally full of pain and rage and hopelessness. Despite what anyone has told you. Despite pleas to find some help, some professional help in coping.

You are newly diagnosed. You are, currently, healthy. Stress, of course, can change all that in shockingly little time.

That part, at least, is up to you.

No one should sugarcoat this illness. It's serious. It's rough on a lot of levels.

But it will not kill you today.

You can decide whether or not today is worth living. And then, tomorrow, you can make that choice again. Because the only way out is through.

You are not a dead man walking.

 If nothing else, I hope that piece of information someday sinks in.


"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline Bucko

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  • You need a shine, missy!
    • The Spin Cycle
Re: what the # is so positive about being positive
« Reply #13 on: March 05, 2007, 03:01:13 PM »
Embrace your fears, embrace the absurd and you will embrace the life you've been dealt (I believe in predestination and fate). Revel in its contradictions and pick your battles with injustice carefully but thoroughly.

Make a new friend today and tell him/her that you love him/her.

Don't let bitterness win. Explore the real.

Brent
(Who really lives that way most days)
Blessed with brains, talent and gorgeous tits.

The revolutionary smart set reads The Spin Cycle at least once every day.

Blathering on AIDSmeds since 2005, provocative from birth

Offline Ihavehope

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Re: what the # is so positive about being positive
« Reply #14 on: March 05, 2007, 03:12:16 PM »
JKinatl2's post is deep. Made me re-think a few things about how I view HIV/AIDS. Jonathon, if it is any comfort to you, many of us newly diagnosed have no guarentees that things will be much better for us in the future than is for you. We may have more and slightly better treatments now but this is a virus that is here to stay in our bodies forever. We may have it slightly better than perhaps you did when you were newly diagnosed but the stigma and fear still remains marked deep inside us all. If we ever made you or anyone who has been living with HIV/AIDS for many years feel inferior, it wasn't our intention. I am sure 10 years from now or even 20 years from now, if I am still alive, I will feel the same resentment towards the newbies. It's ok to tell us your story, many of us need to hear an experience to open our eyes and take a better stand in our health.

When I joined a support group for newly diagnosed, I was the youngest one of 10, and often felt that I was the one who was seeking most help and knew more about this disease. Many people my age or older who are newly diagnosed were more concerned about dating issues and sex more than finding out how well their body was fighting the virus or how high their VL was. I am scared shitless, and if you read many of my post you can see how I get upset when doctors tell me I am doing well, when clearly my numbers are stating something else and how I am going to live a normal life expectancy when at 26 I already developed AIDS and resistance to drugs. It's not a manageable disease but at this point it does not do me any good to argue with doctors. Waking up each morning and the first thing I think of is how dumb I was for not using protection and how I feel like I confronting a problem bigger than anything I can imagine. I cry everyday because I know how serious and drastic things can change.
Infected: April 2005
12/6/06 - Diagnosed HIV positive
12/19/06 - CD4 = 240  22% VL = 26,300
1/4/07 - CD4 = 200 16% VL = ?
2/9/07 = Started Kaletra/Truvada
3/13/07 = CD4 = 386 22% VL ?

Offline David_CA

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Re: what the # is so positive about being positive
« Reply #15 on: March 05, 2007, 04:02:22 PM »
You know, I read JK's post like I read most of his posts - with the knowledge of what's he's dealt with, at least what I know he's dealt with.  Experience is a great, if not the best, teacher, and I have a great deal of respect of others' experience.  Like Ihavehope says, there's no guarantee that things will be better for us, but I think our treatments are much better than those early ones.  I think those that discredit the words of the 'old timers' are just deluding themselves.

Living 'knowing' my life will now suck because I have AIDS pretty much guarantees me that it will.  I'm not unrealistic in what I expect from the future, but almost each year has brought about some improvement in treatment.  I may never be cured of this virus, but I don't expect to.  I do look forward to new treatments for those resistant to what's currently available and to those newly diagnosed.  I listen to what the 'old timers' say.  I've learned, and continue to learn, a great deal from them.  I get just as scared as anybody else thinking about those things happening to me. 

Here's my dilema: what good is scaring myself doing to my mental or physical wellbeing?  I could depress myself to the point of not leaving the house or taking meds, 'cause I'm gonna get sick and die anyway, right?.  My shrink read some notes of what I told him about how I felt last fall, and it was pretty pathetic.  Maybe it was because I felt crappy (the PCP was setting in pretty well then).  Maybe I was having a bad day when I had that appt.  Who knows.  Who cares. 

The ONLY option for MY survival is to do what's best for my health and emotions.  If that means not dwelling on what could happen or what's likely to happen, then so be it.  When good things happen, I'm happy.  When bad things happen, I seek support and comfort.  I don't think that's unrealistic or unhealthy.  If my Dr. had told me of the horrors of my future at that first appointment, maybe I would have walked out in front of that proverbial bus and ended it.  My Dr. has never told me things would be great, that I'd never be resistant, that I'd not get any OI's, or that this was truly manageable.  He told me to live as healthy as I can, emotionally and physically, and try to control this virus (HAART) and minimize the side effects.  He told me that his purpose was to do his best to help me on all accounts.  To me, that's realistic.

David
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline Miss Philicia

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Re: what the # is so positive about being positive
« Reply #16 on: March 05, 2007, 04:07:03 PM »
The scary, and I mean REAL scary, is the "unknown" of what OI will finally lead you down the long, nasty road to death.  I mean, let's be frank -- you never know which gruesome one it will be.  And even with better treatments for OI these days it still happens and sometimes it is fatal.

I've NEVER been in a hospital (believe it or not after being HIV+ for +15 years!) and it's that unknowable that at times frightens me.  Now, to be sure, I do not fixate on this inevitable -- but it does enter my mind at times.

I just hope there's LOTS of morphine for me... LOTS... oh, and Dominican go-go boys dancing next to my bed and Loleatta Holloway music.
"I’ve slept with enough men to know that I’m not gay"

Offline Ihavehope

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Re: what the # is so positive about being positive
« Reply #17 on: March 05, 2007, 04:09:39 PM »
I just hope there's LOTS of morphine for me... LOTS... oh, and Dominican go-go boys dancing next to my bed and Loleatta Holloway music.

LoLz. Philly. mmmmmmm. dominicans.. mmmmmm. que rico! Now I want fried sweet plantains. mmmmm... dominicans..
Infected: April 2005
12/6/06 - Diagnosed HIV positive
12/19/06 - CD4 = 240  22% VL = 26,300
1/4/07 - CD4 = 200 16% VL = ?
2/9/07 = Started Kaletra/Truvada
3/13/07 = CD4 = 386 22% VL ?

Offline woodshere

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Re: what the # is so positive about being positive
« Reply #18 on: March 05, 2007, 04:11:36 PM »

Sadly, this is the divide between those of us who have experienced the reality of AIDS and those who have not. And there will ALWAYS be a divide.


Once again Jonathan has written a post that is spot on.  It is funny the quote above is what I have spent alot of time thinking about the past few days.  As I read posts from those infected pre-HAART, I cannot comprehend the vastly different experience they have had as compared to mine.  I have it so much easier.  I know that in 10-15 years I might find myself in dire straights.  In 1988 someone who was HIV+ didn't think much more in the future than a year or two, I am being told to expect to see retirement.  What am I to do?

I know the meds are doing damage to my internal organs, I know resistance may develop and I will have to switch to something else, probably many times. However until that time comes what am I to do, worry about when it is coming.  My doctor says things are going well, I see my labs improve or stay steady in the normal category.  Am I to just say yeah I see this but I know I dieing. I know that I there is a possibility that I will die of AIDS, but there is also a possibility that I could be killed in a car wreck driving home tonight. Do I stop driving, no.  Therefore I shouldn't stop living a normal life due to having AIDS (which technically I do).

I can worry about the future and what is going to happen, but it really does not help me to have all the extra stress over outcomes that I cannot control.  I choose to concentrate on what I can control, taking meds, speaking to people about being tested, volunteering with the local ASO.

If or when the time comes that I do have an OI or suffer in some way other long time survivors have, I hope I am able to do so in the same manner  by those here who continue to live after 15, 20 and 25 years of a positive diagnosis.  

Woods
« Last Edit: March 05, 2007, 04:14:22 PM by woodshere »
"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it."   Nelson Mandela

Offline jkinatl2

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Re: what the # is so positive about being positive
« Reply #19 on: March 05, 2007, 04:42:20 PM »
<<If my Dr. had told me of the horrors of my future at that first appointment, maybe I would have walked out in front of that proverbial bus and ended it.>>


I dunno if I agree with you on that. You are no weaker than any of the rest of us. And many of us, diagnosed pre HAART, were told the worst case scenarios off the bat. Though many of us, I imagine, threw ourselves into a bottle of whiskey on the way home, the animal instinct to survive, to go on, is more powerful than you'd think.

I hardly think you - or anyone here - is substantially weaker in spirit or resolve than those of us who indeed had that experience.

LIving in despair is just as unrealistic, IMHO, as living in denial. Each paradigm presupposes the certainty of an outcome. Each fails rather miserably in that regard.

But it begs the question. What's worse? Being told, as many of us were, to get our affairs in order? Being told that we're not long for this planet? Or being told that AIDS is a non-issue? Both are illusions, based on the most vapid of statistics. Neither seems particularly healthy to me. There has to be a balance of sorts between realism-grounded optimism, and acceptance of our unwilling recruitment in a lifelong struggle.

I firmly believe that you, that most if not all people are up to the task. That, at least, is hardwired into our genetic structure.

I also believe that if you insinuate that someone cannot handle the facts as they currently exist, then you are depriving them of the chance to find their real strength and power.

The truth might not set anyone free, but I assert that the facts will, at the very least, illuminate the road ahead.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline dtwpuck

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  • дано мне тело, что мне делать с ним?
Re: what the # is so positive about being positive
« Reply #20 on: March 05, 2007, 05:42:53 PM »
100% On the Mark

But Don't Fear
And Don't Be Scared
Just Remember That
The Closer You Get To The Light
The Larger Your Shadow Becomes

What exactly does this mean and how exactly does it help someone concerned about canned psychobabble cope with having HIV?
Floating through the void in the caress of two giant pink lobsters named Esmerelda and Keith.

Offline David_CA

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Re: what the # is so positive about being positive
« Reply #21 on: March 05, 2007, 05:44:12 PM »
Jk, of course, you're probably right; I most likely wouldn't have done myself in.  I'm too damned stubborn for that (just ask my hubby), but I bet the thought would have crossed my mind.  I guess the point I was making is that if I'd been told how bad things were likely to be, I'd be much more likely to not take care of myself as well, indulge in more self-destructive behavior, etc.  Instead, I tried to improve my diet, cut out a lot of alcohol to ease the strain on my liver, and started exercising a bit more.  Being told what I was by my Dr. at my first appointment made a big difference in how I look at it and, so far, how I live with it. 

I guess the difference is the very early infectees didn't really know what was ahead of them to the extent that we do today.  Those of us more recently diagnosed have a better idea of what to expect and how to avoid or reduce certain side effects, etc.  Whether we do so realistically or choose to ignore the possibilities of what might happen is the issue, I think.

D
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline Lis

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Re: what the # is so positive about being positive
« Reply #22 on: March 05, 2007, 05:45:35 PM »
I for one can say that i am quite sad that there is so little info..(or people that read it)  what JK states is from his heart, and I gotta say.. this man has to SAVE up enough energy to continue fighting what he believes in!!  He has spent hours upon days researching this disease... (yes it is a disease.. not an EASE)  I think that as you all blast the "don't rain on my parade , its my virus.." you should remember that this is  an open forum .. and not all of its participants are as well, or lucky... and yeah.. call me a hater... but it pisses me off that you think you got this tiger by the tail...

ME!!!
poz 1986....

Offline dtwpuck

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  • дано мне тело, что мне делать с ним?
Re: what the # is so positive about being positive
« Reply #23 on: March 05, 2007, 06:06:25 PM »
Zeb...

Listen to Jonathon, for he is wise.

I wanted to add perhaps a little insight as to what goes on in the mind of someone facing a crisis like being poz.

First off... finding out I had HIV was hugely traumatic.  I went through many years of miserable depression.  Then I figured out life was worth living.  I will spare you the details.  The long and short of it is that being positive forced me to deal with other things in my life.  I could not manage dealing with HIV without coping with all of my other completely fucked up issues.    I still have many to deal with, as I am reminded every day.  But becoming positive was the catalyst that caused me to deal with some pretty big things. 

Would I have done it otherwise?  Maybe.    Am I glad I am poz?  Absolutely not.  Am I content with myself?  Yes. 

Secondly...  Many people find solace in cliches which help neatly summarize a complex emotion.  While some of them might have a kernal of truth in them, honey, facts are facts.  HIV is a dangerous disease.  Learning to cope and be happy with your lot in life is no simple task. But if a cliche helps someone, I think it's ok to use it as a positive affirmation, for one's own personal use.  Honestly, they drive me nuts myself, because I find all this too complex, too tragic to be summarized by a catch phrase.   So, I have a similar reaction to you when I hear trite little phrases.  But truth be told, you are smart enough to know the difference.  Many of us here do too.

I know from experience how I have dealt with it.   You will find a variety of opinions out there, but essentially when Jonathon writes that the only way out is through... he's right.  You can no longer choose whether you have this disease.  You can choose how you are going to deal with it.  But before you get to the phase, you have to feel a whole lot of stuff.  Despite the fact that there is a lot of drama on this website, there are some very wise people here.  We hear you.    You are going through some really tough stuff.   

Hugs
Scott
Floating through the void in the caress of two giant pink lobsters named Esmerelda and Keith.

Offline cjc

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Re: what the # is so positive about being positive
« Reply #24 on: March 05, 2007, 06:20:34 PM »
Maybe you are worried ,scared and sad because,you,like the rest of us  are dying and it's scary.Maybe you are worried because you have a wife and children to worry for in addition to yourself. listen to the ones here who have lived through a lot with this. They sure made me feel better when I was first found this place. This disease sucks but we can live longer now than we could have before the advances in meds and care that have been made. like they told me, you will be here for a long time and your worries and fears will ease  as time goes by. I really hope things get better for you.  Cristy

Offline Moffie65

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Re: what the # is so positive about being positive
« Reply #25 on: March 05, 2007, 07:11:15 PM »
Friends of AIDSmeds.com

Many of you don't know me, or my penchant for straightforward responses, because of recent happenings, I have tempered my participation here due to many of my long time, long term friends being blasted by the owners for being straightforward, honest, caustic, assholes at times, and just plain miserable at other times.  We all feel it, we all have tempered our responses, and like Jonathan, Bucko, Lis and many others here, we have become more silent, rather than to make things difficult for a new and revised operation here.

That being said, I sent this letter to two dear members of this forum who have never lied to me, never hidden their true and honest spirit, and when things turn shitty, are always lighthouses of temperence, and knowledge.  I wanted to place it here, because it speaks volumes about some of the issues that Zeb has brought to the surface and while doesn't answer any questions, and in fact probably raises more; I felt after reading some of the responses from some of the people I love and adore with all my heart, I wanted to share what is silently going on via PM's here, due to the collar of silence we are sometimes forced to place on our fingers.


Hi my Friend!

I arose early this morning, (3am) to the discussion between you and Val.  It brought up so very much in me that made my blood boil, but I just couldn't bring myself to enter the fray.  I am not angry at him, but am aghast at his apparent intelligence, but at the same time, ignorance.  I could have brought up so very many issues which are problematic in both France and Germany.  ie, Racial profiling in Paris, German's penchant for marginalization in the work force, and on and on, but when someone is so hateful, then it seems like such a useless exercise and I just don't have the time to try to do it all by keystrokes.

On that same vein, my work here (in Arizona) is dying a natural death, and I have been forced to close the ASO and fold up my work.  Being a good Capricorn, in my heart this really hurts, but in my mind, I know that it was suffering from community ignorance from the day I started the work four years ago.  I suppose I am suffering the plague of "relavency", and while my monthly column in the paper is really being accepted well amongst some, it is just about the only thing that keeps me going. 

As I sit here, making every attempt to put into words what is really brewing in my skull, I am at a total loss to make sense of it.  Depression?  Not really, I've been there so many times, I know what it feels like, so that isn't the problem.  I guess it is just a "life moment" that I find myself in, with little direction.

For weeks/months now, I have been suffering through this miserable winter, that keeps me away from the sun that is ruining my skin, but brings me so much strength at the same time.  My hernia, which has been repaired so many times, my doctor and nurse will not even schedule me for another operation, keeps getting larger and whenever I blow my nose or sneeze, my intestine pops out the hole and gets really uncomfortable.  My Peripheral Neuropathy is, while less annoying than it used to be, still present and still annoying.  It keeps me from doing much of what I really want to do.  The re-modeling of the home is at a stand still, while I watch my very healthy mate, suffer under the work load that his employer keeps on his head.  Because of his youthful appearence, his employer treats him as a 30 year old, not realizing that there is nobody older than him at his company.  He is exhausted by Thursday, and so the weekends are spent with him trying to re-gather his strength.  He is beginning to talk about retirement with me, and we have never had those conversations at this point, but at 65, he is naturally beginning to slow down.  When we met, he had the back of a weight lifter and the body of an adonis, and he is a full five years older than I, but over the years, he has been reduced by quite some amount, due mainly to aging.  He is still very handsome, and still a hottie.  I have been making every attempt to accept that I probably will not outlive him, but I have to remain a realist and understand that he still smokes, and has for 45 years, so he may in fact leave first.  He will not talk about himself or his issues, and we don't talk about mine, except when they really get out of hand.  I am talking about physical issues here. 

I often wonder just how long I can go on with this broken, sore and failing body.  I want to keep on, and when I allow myself to think about the future, I sometimes get excited, but then the reality hits me upside the head and I finally realize that at 60, I will more than likely never be as energetic as I once was, and with all the side effects I suffer on a fairly constant basis; I wonder just how long it will be worth taking the toxic mix that keeps me here, sitting in my recliner, waiting for that one more warm day, looking at all the dirt in the house that needs to be gotten rid of, but not having the energy to get up and do it. 

Some days, I just wonder how long or how many more years I need to live in this broken body, to prove I was right. 

Things with the activism on the state level are still going good, but even still, the goals have to be clear, or else one just feels like they are walking in a tunnel with no light at the end and none to light the way. 

I have thought about posting on the site, but now that it has been turned into a virtual meat market, I have NO interest in being a part of the place anymore.  At one time my words were appreciated, but when I took my hiatus, I also learned that many of the people who said they appreciated my words were only saying so for selfish reasons.  They really didn't care about my feelings or my issues at all, only their own.  I think this is a trap that the internet sucks us into, by making us feel good on the surface, but at the same time, sucking the life out of our collective asses.  I joined the new site, only to sit through so many "loading" screens and then to find out it is a site with absolutely no substance and not one bit of help for anyone, beyond their own self needs. 

Matty, I just didn't have anyone else that I could send this to, as there are no other members here who I feel understand my quandry.  I am not considering stopping the meds just yet, but my understanding of Jonathan's decision last year to do so, is so very much more understandable than it once was.  I have discussed this with my sweetie for years, and his comment is always that if he does turn up HIV+ that he would never take the medications because he has seen the mess that it makes of a body and he just wouldn't submit himself to this.  With the uselessness that I am currently feeling, I totally understand, and think about my current life, my future and just how long I want to stick around and be useless to anyone else on the planet.  Uselessness is not something I accept well, because all my life I have been terribly busy, always doing something, and if the only thing that is left for me is simply intellectual, then I have to wonder jsut how long I can deal with that.  I am sure Stephen Hawking would give me a bitch slap, but truth is, I know he has never had mobility and fallen in love with a physical life, but I have, and I just don't know how to accept a vegitative state.  (I know Stephen, and we used to lunch together on occasion while he was just beginning his tenure at Stanford, one of my customers)

I don't want you to think I am bedridden, because then I would absolutely have no problem dealing with this, but I am entering a grey area, and one I have never had the balls to really consider.  I have been kept alive by artificial means now for the better part of 13 years, so where does one really draw the line and when does it become a reality. 

I know you didn't really need this tonight, but it will give you something to think about and in a day or two, or whenever you feel like responding, I will maybe get your view on all this shit. 

Isn't it funny, that a year ago, or even two years ago, I would not have had a bit of hesitation placing this in a post and asking for input, but today, I personally don't give a damn how some of these people think or what they "feel" about the concerns of an old man who they cannot even relate to, simply because at the ripe old age of 25, they cannot even project themselves living to my age. 

Thanks for letting me dump on you this fine morning/night.  The sunrise was stunning, not unlike many that I am sure happen in the bushlands of your great country.

Matty, thank you for allowing me to share, and for a really cynical read, you should try my latest Blog. 

Love,
Tim.


Please be kind, I am not as fragile as I was at six this morning, but if you want me to stick around here, you will not attack my personal observations of the health and welfare of this site.

Love,
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 Lis

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Re: what the # is so positive about being positive
« Reply #26 on: March 05, 2007, 07:25:34 PM »
I love you Tim... I wish for nothing more then coffee with you and Bob on the smoking porch!!!!


(crying now)
poz 1986....

Offline Matty the Damned

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  • Ninja Please
Re: what the # is so positive about being positive
« Reply #27 on: March 05, 2007, 07:32:03 PM »
Matty woke up to Daddy Tim's glorious and heart-wrenching PM. I'm still lumpen-throated. It's like when our brother James (Gecko31) died in September 2005. All was dark until our beloved Papi Tim, with one post, put everything into perspective.

And here we have it again.

Daddy Tim, if the only thing was ever posted on the Internet was that PM, then the whole endeavour has been worth it.

Matty the Damned
(Who is overcome)

/edited for a teensy but extraordinarily annoying typo/
« Last Edit: March 05, 2007, 08:21:08 PM by matty.the.damned »

Offline jkinatl2

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Re: what the # is so positive about being positive
« Reply #28 on: March 05, 2007, 07:41:49 PM »
God damn.

I hope Peter and the rest read this.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline aupointillimite

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  • FUS DO RAH!
Re: what the # is so positive about being positive
« Reply #29 on: March 05, 2007, 07:44:14 PM »
God damn.

I hope Peter and the rest read this.



Me too.
Your tastebuds can't repel flavor of this magnitude!

Offline xtremepms

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    • Cono
Re: what the # is so positive about being positive
« Reply #30 on: March 05, 2007, 08:05:29 PM »
Friends of AIDSmeds.com

Many of you don't know me, or my penchant for straightforward responses, because of recent happenings, I have tempered my participation here due to many of my long time, long term friends being blasted by the owners for being straightforward, honest, caustic, assholes at times, and just plain miserable at other times.  We all feel it, we all have tempered our responses, and like Jonathan, Bucko, Lis and many others here, we have become more silent, rather than to make things difficult for a new and revised operation here.

That being said, I sent this letter to two dear members of this forum who have never lied to me, never hidden their true and honest spirit, and when things turn shitty, are always lighthouses of temperence, and knowledge.  I wanted to place it here, because it speaks volumes about some of the issues that Zeb has brought to the surface and while doesn't answer any questions, and in fact probably raises more; I felt after reading some of the responses from some of the people I love and adore with all my heart, I wanted to share what is silently going on via PM's here, due to the collar of silence we are sometimes forced to place on our fingers.


Hi my Friend!

I arose early this morning, (3am) to the discussion between you and Val.  It brought up so very much in me that made my blood boil, but I just couldn't bring myself to enter the fray.  I am not angry at him, but am aghast at his apparent intelligence, but at the same time, ignorance.  I could have brought up so very many issues which are problematic in both France and Germany.  ie, Racial profiling in Paris, German's penchant for marginalization in the work force, and on and on, but when someone is so hateful, then it seems like such a useless exercise and I just don't have the time to try to do it all by keystrokes.

On that same vein, my work here (in Arizona) is dying a natural death, and I have been forced to close the ASO and fold up my work.  Being a good Capricorn, in my heart this really hurts, but in my mind, I know that it was suffering from community ignorance from the day I started the work four years ago.  I suppose I am suffering the plague of "relavency", and while my monthly column in the paper is really being accepted well amongst some, it is just about the only thing that keeps me going. 

As I sit here, making every attempt to put into words what is really brewing in my skull, I am at a total loss to make sense of it.  Depression?  Not really, I've been there so many times, I know what it feels like, so that isn't the problem.  I guess it is just a "life moment" that I find myself in, with little direction.

For weeks/months now, I have been suffering through this miserable winter, that keeps me away from the sun that is ruining my skin, but brings me so much strength at the same time.  My hernia, which has been repaired so many times, my doctor and nurse will not even schedule me for another operation, keeps getting larger and whenever I blow my nose or sneeze, my intestine pops out the hole and gets really uncomfortable.  My Peripheral Neuropathy is, while less annoying than it used to be, still present and still annoying.  It keeps me from doing much of what I really want to do.  The re-modeling of the home is at a stand still, while I watch my very healthy mate, suffer under the work load that his employer keeps on his head.  Because of his youthful appearence, his employer treats him as a 30 year old, not realizing that there is nobody older than him at his company.  He is exhausted by Thursday, and so the weekends are spent with him trying to re-gather his strength.  He is beginning to talk about retirement with me, and we have never had those conversations at this point, but at 65, he is naturally beginning to slow down.  When we met, he had the back of a weight lifter and the body of an adonis, and he is a full five years older than I, but over the years, he has been reduced by quite some amount, due mainly to aging.  He is still very handsome, and still a hottie.  I have been making every attempt to accept that I probably will not outlive him, but I have to remain a realist and understand that he still smokes, and has for 45 years, so he may in fact leave first.  He will not talk about himself or his issues, and we don't talk about mine, except when they really get out of hand.  I am talking about physical issues here. 

I often wonder just how long I can go on with this broken, sore and failing body.  I want to keep on, and when I allow myself to think about the future, I sometimes get excited, but then the reality hits me upside the head and I finally realize that at 60, I will more than likely never be as energetic as I once was, and with all the side effects I suffer on a fairly constant basis; I wonder just how long it will be worth taking the toxic mix that keeps me here, sitting in my recliner, waiting for that one more warm day, looking at all the dirt in the house that needs to be gotten rid of, but not having the energy to get up and do it. 

Some days, I just wonder how long or how many more years I need to live in this broken body, to prove I was right. 

Things with the activism on the state level are still going good, but even still, the goals have to be clear, or else one just feels like they are walking in a tunnel with no light at the end and none to light the way. 

I have thought about posting on the site, but now that it has been turned into a virtual meat market, I have NO interest in being a part of the place anymore.  At one time my words were appreciated, but when I took my hiatus, I also learned that many of the people who said they appreciated my words were only saying so for selfish reasons.  They really didn't care about my feelings or my issues at all, only their own.  I think this is a trap that the internet sucks us into, by making us feel good on the surface, but at the same time, sucking the life out of our collective asses.  I joined the new site, only to sit through so many "loading" screens and then to find out it is a site with absolutely no substance and not one bit of help for anyone, beyond their own self needs. 

Matty, I just didn't have anyone else that I could send this to, as there are no other members here who I feel understand my quandry.  I am not considering stopping the meds just yet, but my understanding of Jonathan's decision last year to do so, is so very much more understandable than it once was.  I have discussed this with my sweetie for years, and his comment is always that if he does turn up HIV+ that he would never take the medications because he has seen the mess that it makes of a body and he just wouldn't submit himself to this.  With the uselessness that I am currently feeling, I totally understand, and think about my current life, my future and just how long I want to stick around and be useless to anyone else on the planet.  Uselessness is not something I accept well, because all my life I have been terribly busy, always doing something, and if the only thing that is left for me is simply intellectual, then I have to wonder jsut how long I can deal with that.  I am sure Stephen Hawking would give me a bitch slap, but truth is, I know he has never had mobility and fallen in love with a physical life, but I have, and I just don't know how to accept a vegitative state.  (I know Stephen, and we used to lunch together on occasion while he was just beginning his tenure at Stanford, one of my customers)

I don't want you to think I am bedridden, because then I would absolutely have no problem dealing with this, but I am entering a grey area, and one I have never had the balls to really consider.  I have been kept alive by artificial means now for the better part of 13 years, so where does one really draw the line and when does it become a reality. 

I know you didn't really need this tonight, but it will give you something to think about and in a day or two, or whenever you feel like responding, I will maybe get your view on all this shit. 

Isn't it funny, that a year ago, or even two years ago, I would not have had a bit of hesitation placing this in a post and asking for input, but today, I personally don't give a damn how some of these people think or what they "feel" about the concerns of an old man who they cannot even relate to, simply because at the ripe old age of 25, they cannot even project themselves living to my age. 

Thanks for letting me dump on you this fine morning/night.  The sunrise was stunning, not unlike many that I am sure happen in the bushlands of your great country.

Matty, thank you for allowing me to share, and for a really cynical read, you should try my latest Blog. 

Love,
Tim.


Please be kind, I am not as fragile as I was at six this morning, but if you want me to stick around here, you will not attack my personal observations of the health and welfare of this site.

Love,

I know I have not been a member a long time, but Jonathans blog is what got me here in the first place.  He is living  with HIV/AIDS.  His candor is what I was searching for when I came here.  I wanted and needed the truth about this disease so I could help my friend.  I read the forums everyday, and some days I learn a little bit, some days I learn a lot.  There are so many different people here, we all can learn so much if we just try.  Yes, there are new medicines out there.  The problem is they are new.  Who knows what long term effects they will have?  It can be worse then any of us could imagine.  It could be great.  We don't know.  What we do know is that there are people here that have lived with this for so many years.  With and without the newest/greatest medicines.  They have something to teach us all.  If nothing more then it is possible to live.  Isn't that what this site is about? 
Support is more then just saying what numbers are good, it is more then just being sad, angry or even ill tempered.  It is being able to share your stories and maybe, just maybe, someone will learn something from you.  Someone might get pissed, so be it.  It is called life.  You can not make everyone happy all the time. 
Do I like the drama?  Absolutely.  I live for it.  I love reading it because it makes me not think about my own problems.  But thats just me.  I have never been accused of being normal.   ;) I just hope that everyone here can see the importance of everyones view.  New to HIV, living with it, or just knowing someone who has it.   
There has been many times when reading the forums, that I would have replied, but felt it was not my place to say anything.  And this might of been one of those times, but to see members who are here to help, simply because they want to help, being hushed seems sad to me.  I was not around in the beginning, so I have nothing to compare this forum to, but please, don't throw away our most precious gifts.  The gift of learning from those who know.  If you run them off this site, who will help you when you are 15 or 20 years into this and have no idea what is coming next?  Who would you rather ask questions to?  Someone who is in the same boat as you or someone who is ahead and can tell you the water is rough, time to change directions?  There is value in those before us if we only take the time to listen.
I can't see anything positive about HIV, but I can see positive people LIVING with it.  I thank you all for showing me that.

Connie

Offline tigger2376

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Re: what the # is so positive about being positive
« Reply #31 on: March 05, 2007, 08:16:38 PM »
wow. can't say anything more. :'(
I know i'm going to enjoy the party in the afterlife, but do you all mind that I'm going to be VERY late!!!

Offline ScooterTrash

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Re: what the # is so positive about being positive
« Reply #32 on: March 05, 2007, 08:21:39 PM »

What is REAL?" asked the Rabbit one day, when they were lying side by side near the nursery fender, before Nana came to tidy the room. "Does it mean having things that buzz inside you and a stick-out handle?"

"Real isn't how you are made," said the Skin Horse. "It's a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real."

"Does it hurt?" asked the Rabbit.

"Sometimes," said the Skin Horse, for he was always truthful. "When you are Real you don't mind being hurt."

"Does it happen all at once, like being wound up," he asked, "or bit by bit?"

"It doesn't happen all at once," said the Skin Horse. "You become. It takes a long time. That's why it doesn't happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand."

"I suppose you are real?" said the Rabbit. And then he wished he had not said it, for he thought the Skin Horse might be sensitive. But the Skin Horse only smiled.


Tim,
We need the kind of wisdom that only the "REAL" can share. And I believe that YOU are REAL.
Please don't prove me wrong.


Offline AlanBama

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Re: what the # is so positive about being positive
« Reply #33 on: March 05, 2007, 08:41:40 PM »
This thread made me cry also.

Tim, what can I say, except that I love you and I care.

Jonathan, I love you too.

Matty, you know I love you as well, even though we may never meet in person.

Alan (who knows what it is to struggle through the days)
"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 dtwpuck

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  • дано мне тело, что мне делать с ним?
Re: what the # is so positive about being positive
« Reply #34 on: March 05, 2007, 08:46:29 PM »
Tim... I loved reading your letter.  I, however, am sorry that you feel that people here don't care about what you say.  I usually read every word.  I don't usually comment because what you say is usually quite clear and well spoken, I must say that your humanity comes through loud and clear.  You have my respect and I think this would be a lesser place should you leave.

Sigh...

So much unhappiness tonight.
Floating through the void in the caress of two giant pink lobsters named Esmerelda and Keith.

Offline David_CA

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Re: what the # is so positive about being positive
« Reply #35 on: March 05, 2007, 08:51:34 PM »
This is not directed at anybody in particular, but I've always sensed almost an animosity towards the newly infected / diagnosed.  It's almost a resentment that we haven't dealt with the same horrors that they have.  Isn't this similar to how those who've been though traumatic situations often feel towards those who haven't? 

I really haven't read may threads, a couple come to mind, where the experience of an 'old timer' has been dismissed as useless.  I'm sure that I'll never be put on AZT monotherapy, so I doubt I'll have all the issues that go with that.  I doubt I'll ever see a huge number of my friends die in a short time from AIDS related illnesses, but I haven't known a lot of folks with AIDS.  There are a lot of horrible issues related to AIDS that, hopefully, I'll never experience.

But don't think for a second that I don't feel when one of you who've been dealing with.  Don't think that the thoughts of anybody dealing with that shit don't make me cry.  Don't think that the thoughts of the same happening to me don't scare the shit out of me.  They do.

The way most of us handle this virus is the best way we can.  Some try to handle it like it's just another issue do deal with.  This is what I do.  I'm not sure that I know of another way to cope with it that would be any better.  Please give us some credit, where it's due, anyway.  Like you 'old timers' (never said with anything but respect), we're just doing the best we can with it.

And Tim, you KNOW that you've got a lot of folks here who appreciate what you take the time to write.  The same goes for Lis, Alan, Jonathan, Mark, and all the others that do their best when the less experienced folks need support.  We really do listen to what you say.

David



Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline Longislander

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Re: what the # is so positive about being positive
« Reply #36 on: March 05, 2007, 08:54:58 PM »
Poor Zeb, his threads been hijacked.

Obviously Zeb has been online reading what he can about HIV. He knows, I'm sure , of all the bad things that very well may happen to him in his future with HIV. Hell, that's why he's scared and worried.  If he didn't know, he sure does know now.

I met a 20-something y/o guy the day after he was diagnosed late Dec, '06. He is scared. He's also not out to his family. He quit his job the day he was diagnosed with the intention of going back to his native country to die there alone. We've spent a considerable amount of time together, and try as I may I cannot convince him to start meds. Neither can his doctor. His CD4's are in the 100's. He does not want to spend the rest of his life on medications to stay alive. He didn't leave the country, got a new job 2 weeks ago, and moved out of his parent's home. Still not taking any meds and cancelled his last Dr. appt..

Is this what we have planned for Zeb, paint the picture so damned ugly he'll want nothing less than to die right now? Of course he has to go through all of this, but the sooner he gets his mind wrapped around living, the better off he will be. Slight difference between him and some of you--he has 2 little children depending on him. He really can't take all the time in the world commiserating with himself without a tremendous negative impact on his family. If he can't do it on his own, he needs to get professional help.

I hope Zeb hasn't read this far down in his own thread.

Of course sage advice from someone who's been infected a long time is invaluable. But know when, and how, to give it.

Enough of the I love Tim, Moffie, and JK. This is Zeb's thread.  He asked 'what's so positive about being positive' . Not what's so negative about being positive'.
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 AlanBama

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Re: what the # is so positive about being positive
« Reply #37 on: March 05, 2007, 09:05:33 PM »
Paul,

No you did not just disrespect me.   I will tell Tim, Jonathan, Matty and anyone else I love them whenever it suits me.

Zeb is asking for answers.   Tim is giving answers, HIS TRUTH.  It may not be your truth, or Zeb's, but it is Tim's.
"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 Lis

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Re: what the # is so positive about being positive
« Reply #38 on: March 05, 2007, 09:10:13 PM »
Hey longilander... when you can cop to having HIV, let us all know... until then .. Zeb , in my mind, was sick and bloody tired of the HIV cheer leaders.... (You know who you are)  It sucks, and he is scared... It 's a road that nobody else can lve for you... and he is VENTING!
poz 1986....

Offline Longislander

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Re: what the # is so positive about being positive
« Reply #39 on: March 05, 2007, 09:10:28 PM »
Alan, no direct disrespect was meant. You aren't the only one who was confirming your adoration and love for Tim. This is not a thread about Tim, though it has become that.
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 Moffie65

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Re: what the # is so positive about being positive
« Reply #40 on: March 05, 2007, 09:13:46 PM »
Thank you all for your posts as they are honest and truthful, but I will comment only on Paul's first one.

Taking medications to fight this disease is a CHOICE, not an obligation.

What many of us asshole old farts are placing here is a reality check for all the POSITIVE bullshit that is rampant, due only to the current adminsitrations' penchant for lying about everything, including the severity of HIV on a body.  If you know the science Longislander, you wouldn't have to be told this by me or anyone on your short list of "Thread Thieves"!

If you cannot and will not get the tie between Zeb's list of bullshit snippets of falshoods, and what we have painfully placed here for your parusal, then I will not surely try to make it stick for you.

I trust your life with HIV will be full, and you live a long and healthy life.  For me, I will continue to contemplate my fears, pain, emotional traumas, and finally my demise.  

When you reach sixty, please check back with me and let me know how your denial of the truth worked out.

If anyone of you are still convinced that both Jonathan and I are complete downers, please paruse the early parts of our Blogs, and I think you will find that both of us have lived, and lived fruitful and exciting lives; POST INFECTION!  If reading all of our shit from the beginning of our stories is too difficult, or too time consuming, then you really are not interested at all in learning anything about what a life time of HIV/AIDS brings to two VERY normal people!

Love,
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 Longislander

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Re: what the # is so positive about being positive
« Reply #41 on: March 05, 2007, 09:16:13 PM »
Hey Lis,

Quote
Hey longilander... when you can cop to having HIV, let us all know...


WHAT?!

And yes, it sucks, and Zeb is scared. Let's see if we can't make him feel worse than he already does.
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 aupointillimite

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Re: what the # is so positive about being positive
« Reply #42 on: March 05, 2007, 09:19:17 PM »
And yes, it sucks, and Zeb is scared. Let's see if we can't make him feel worse than he already does.

Pretty words don't make HIV pretty.

It would be absolutely no service to Zeb to tell him sweet little lies now and then to have him later realize that the reality is far different.  He would feel manipulated, condescended to, and unprepared... and rightly so.
Your tastebuds can't repel flavor of this magnitude!

Offline Ihavehope

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Re: what the # is so positive about being positive
« Reply #43 on: March 05, 2007, 09:23:31 PM »
Hey longilander... when you can cop to having HIV, let us all know... until then .. Zeb , in my mind, was sick and bloody tired of the HIV cheer leaders.... (You know who you are)  It sucks, and he is scared... It 's a road that nobody else can lve for you... and he is VENTING!

Hey LongIslander

I think that the people who have lived with HIV for a longer period of time such as Tim and Jonathon want us to be aware of how serious it can be for many of living with HIV. After the experiences they have been through I am sure it is very astonishing to them to see how a few of us newbies can be so naive about certian situations involving HIV. I understand that they may feel somewhat isolated from many of who have been recently infected since we can not relate to many of their experiences. We may not have to go through many things people who got infected in the 80's and early 90's went through but that is not our fault. Most of us newbies do care to listen to the experiences of people who have been positive for numerous years. I want to hear the truth behind HIV, I don't want things to be sugarcoated but I also don't want to feel guilty for not knowing as much as they do. I've talked to someone on the phone who has been through chemo, neuropathy, and many other unfortunate side effects and not once has he made me feel as if I have it much better than he did. He was actually quite happy and proud that considering my age, I was willing to hear his story and asked many questions. Often when the newbies post thread about the information that is given to us by doctors we are bombarded with replies with anti-medication comments. One thing I advice all newbies to do is to not let yourself be influenced by people who tell  you what you should do and when. It is your body therefore each of us has the responsibility to gather information about meds and ask questions. I also ask the newbies like myself to be more appreciative and we learn to listen and respect those who have lived with HIV/AIDS for many years. This disease can bring more sadness than hope at times but we should try to focus on improving our communication skills so none of us would feel offended or isolated.  
Infected: April 2005
12/6/06 - Diagnosed HIV positive
12/19/06 - CD4 = 240  22% VL = 26,300
1/4/07 - CD4 = 200 16% VL = ?
2/9/07 = Started Kaletra/Truvada
3/13/07 = CD4 = 386 22% VL ?

Offline Matty the Damned

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Re: what the # is so positive about being positive
« Reply #44 on: March 05, 2007, 09:29:06 PM »
Paul,

Right now I feel very sorry for you.

MtD

Offline Longislander

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Re: what the # is so positive about being positive
« Reply #45 on: March 05, 2007, 09:29:55 PM »
Moffie,

Thanks so much for addressing my post. Again, ( as in the last time this was all hashed out in the forums), you assume I know no one who has died from AIDS. I have seen it, and I understand where you are in your life.

Taking the meds is definitely a choice, but I will not ever go along with someone suggesting a 28 y/o guy, or a 38 y.o man with 2 children to choose not to take them.

Zeb is sooo new to this , his head is spinning. Just like we all did.  If I had found this site so new into diagnosis, and anyone painted me the bleakest picture of my future that could possibly be, I may have just sold the house (or not even bothered), quit my job, and hid out until I passed on.

Quote
I trust your life with HIV will be full, and you live a long and healthy life.

You know very well you don't feel this way. More than once you have told newly diagnosed members that they WILL suffer all kinds of ills and that they should 'check back with you' when it happens.

You've lived with this a long tiime, and through alot, and you deserve the right to be in the state of mind you are in. The newly diagnosed have not lived through it all yet, and they may or may not go through all you have. But they shouldn't get your current mindset from the get-go. That is why we're trying to remain positive, upbeat, and optimistic about our futures.
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 Ihavehope

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Re: what the # is so positive about being positive
« Reply #46 on: March 05, 2007, 09:43:11 PM »
Moffie,

Thanks so much for addressing my post. Again, ( as in the last time this was all hashed out in the forums), you assume I know no one who has died from AIDS. I have seen it, and I understand where you are in your life.

Taking the meds is definitely a choice, but I will not ever go along with someone suggesting a 28 y/o guy, or a 38 y.o man with 2 children to choose not to take them.

Zeb is sooo new to this , his head is spinning. Just like we all did.  If I had found this site so new into diagnosis, and anyone painted me the bleakest picture of my future that could possibly be, I may have just sold the house (or not even bothered), quit my job, and hid out until I passed on.

You know very well you don't feel this way. More than once you have told newly diagnosed members that they WILL suffer all kinds of ills and that they should 'check back with you' when it happens.

You've lived with this a long tiime, and through alot, and you deserve the right to be in the state of mind you are in. The newly diagnosed have not lived through it all yet, and they may or may not go through all you have. But they shouldn't get your current mindset from the get-go. That is why we're trying to remain positive, upbeat, and optimistic about our futures.

Great reply Long. Although Zeb maybe naive about the consequences of HIV, I am sure that with time he and I will learn how hard it will be for us in the future. I also think Moffie and the rest have the right to express their experiences and pain even if it is hard on us newbies to read. I think that when we all found out we were HIV positive we knew we were in for a very very bumpy ride. The same way we have heard all these wonderful things about meds and how long we may end up living we also need to hear the sad part of it. Why do we need to hear the sad part of all this? Because that is what HIV/AIDS can become, a living nightmare with many consequences. We need to wake up and realize that we must educate ourselves and know when our bodies can no longer respond to meds in the future, know that we have options in the future. We have better meds now than before but that does not make it acceptable for us to believe that OI's are not gonna happen as long as our CD4 counts remain high and we are undetectable. It's a harsh reality and if we never have to go through what people in the 80's had to go through then we can consider ourselves one step closer to winning this battle but we are very very far from winning the AIDS battle.
Infected: April 2005
12/6/06 - Diagnosed HIV positive
12/19/06 - CD4 = 240  22% VL = 26,300
1/4/07 - CD4 = 200 16% VL = ?
2/9/07 = Started Kaletra/Truvada
3/13/07 = CD4 = 386 22% VL ?

Offline Lis

  • Member
  • Posts: 595
Re: what the # is so positive about being positive
« Reply #47 on: March 05, 2007, 09:44:35 PM »
Im 41, I have 2 kids.. and i wonder.... do their class mates have moms that vomit in the morning, I have one in college... for a post graduate degree.. He is a chef not far from my house..(50 miles)  and I cant get there to try the Fare..  I hear that the senetors love the stuff.. the tips are good!!!!!!

the point is.. you can love your life, partner,kids..etc... but it wont stop this stuff, and ALL of us hurt.. I KNOW that Peter S. has bad days too... he just doesnt tell us!!


XOXO to ALL

ME
poz 1986....

Offline AlanBama

  • Member
  • Posts: 3,644
  • Alabama: the 'other' 3rd World Country!
Re: what the # is so positive about being positive
« Reply #48 on: March 05, 2007, 09:46:43 PM »
I always say this (and yes, I'm going to say it again), we're all on the same journey.   We're just at different points along the way.   Oh, and perhaps we are travelling by different means.....some via the Concorde, and some of us are coasting along in an old raggedy 1976 Chrysler Cordoba....

It's all relevant.
"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 David_CA

  • Member
  • Posts: 3,246
  • Joined: March 2006
Re: what the # is so positive about being positive
« Reply #49 on: March 05, 2007, 09:50:05 PM »
I'm just glad I'm not the one who posted this back when I was newly diagnosed.  I'd have freaked out reading all the negatives, quitting meds and dying, etc.  Come on guys, Longislander has a valid point.  There has been a bit of a hijack here, and I'm guilty of participating in that, too.  

David
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

 


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