what the # is so positive about being positive

[zeb]

"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?

[Ihavehope]

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.

[Longislander]

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~

[Zanarkand]

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

[antibody]

positive affirmations help to a big degree.

[David_CA]

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

[aupointillimite]

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. 

[woodshere]

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

[Peter6836]

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

[budndallastx]

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


 

[sweetasmeli]

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

[Ihavehope]

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.

[jkinatl2]

"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.

[Bucko]

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)

[Ihavehope]

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.

[David_CA]

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

[Miss Philicia]

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.

[Ihavehope]

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..

[woodshere]

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

[jkinatl2]

<<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.

[dtwpuck]

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?

[David_CA]

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

[Lis]

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!!!

[dtwpuck]

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

[cjc]

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

[Moffie65]

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,

[Lis]

I love you Tim... I wish for nothing more then coffee with you and Bob on the smoking porch!!!!


(crying now)

[Matty the Damned]

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/

[jkinatl2]

God damn.

I hope Peter and the rest read this.

[aupointillimite]

God damn.

I hope Peter and the rest read this.

Me too.

[xtremepms]

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

[tigger2376]

wow. can't say anything more.

[ScooterTrash]

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.

[AlanBama]

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)

[dtwpuck]

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.

[David_CA]

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

[Longislander]

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'.

[AlanBama]

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.

[Lis]

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!

[Longislander]

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.

[Moffie65]

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,

[Longislander]

Hey Lis,

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.

[aupointillimite]

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.

[Ihavehope]

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.  

[Matty the Damned]

Paul,

Right now I feel very sorry for you.

MtD

[Longislander]

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.

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.

[Ihavehope]

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.

[Lis]

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

[AlanBama]

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.

[David_CA]

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

[David_CA]

... raggedy 1976 Chrysler Cordoba....

Hey Alan, does it have the 'Rich Corinthian Leather'?   Ricardo Montalbán says so. 

[Longislander]

 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!  

Moffie, has it ever occurred to you, along with all the negativite aspects of HIV/AIDS , to point out any of these good points of your life post HIV? Zeb already knows HIV doesn't do a body good. I think he could use some onfo about how is life can still have some quality to it.

[AlanBama]

Tim has posted about the good.....along with the bad and the ugly.

(David, it was 'rich' in '76, it's kinda cracked and faded now) 

[neb_top]

hey guys:
i would like to ask david_nc to send me e-mail?
i would like to ask david_nc if i may become a friend?
thank you. james

[Lis]

Tim.. Killfoile, RAB, Jody, JRE, matty, lisa. elizabeth, cliff bucko JK  ronnie, nancy, Ann Jan, Jazz regina, SDeggo, newt, EM,newnick,matty,   lord the list goes on...

we dont fear the gay plague... WE LIVE IT!!!  

[David_CA]

David, it was 'rich' in '76, it's kinda cracked and faded now 

Well here's a glimpse of it's faded glory

[attachment deleted by admin]

[David_CA]

Tim.. Killfoile, RAB, Jody, JRE, matty, lisa. elizabeth, cliff bucko JK  ronnie, nancy, Ann Jan, Jazz regina, SDeggo, newt, EM,newnick,matty,   lord the list goes on...

we dont fear the gay plague... WE LIVE IT!!!  

Lis, all of us who are POZ® live it.

[Longislander]

I was just a kid at the time, but there was something about that Ricardo Montelban

[Lis]

we all live it... and yet it will never be the same....

[AustinWesley]

"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?

Hey Zeb,

I happen to agree that so many of these statements are just absurd.   I find many of them dangerous.   But, unfortunately we were all dealt with this bad hand.   You don't have to seek enlightenment or find reason in it.   It's a damn virus, not a gift from God.   You've every right to be scared, angry and upset.   Those are your feelings right now and you are entitled to them.

What I can say is that with time things do become easier to cope with.  You are still you and don't let that be lost in a tidlewave of bullshit!

You've stirred up a great many responses here and I'm still reading through some of the thoughts and advice etc.   I felt compelled to ad in an article by Harvey Firestein which I feel relates to some of the questions you've posed.   I'm not posting it to scare you further cause all of us can relate to your fears.  I think you've brought up some really excellent points and I agree with what you are saying.  I just thought this article might be of interest to you and others:

The Culture of Disease

By HARVEY FIERSTEIN

There are too many positive gay role models. In fighting the AIDS crisis over the last 20 years, we have done everything possible to dispel the negative connotations that come with having H.I.V. After all, it's been our brothers and sisters, our boyfriends and girlfriends, and ourselves who have been discriminated against because of a virus. So we produced advertising, created enlightenment programs, spent endless hours making certain that having AIDS or being H.I.V. positive was nothing to be ashamed of. We did a great job. Maybe too great a job. After all the effort exerted to convince the world that AIDS is not a gay disease, we now have a generation embracing AIDS as its gay birthright. According to figures just released by the Centers for Disease Control, the number of new AIDS cases rose last year for the first time in a decade. Four Americans now become infected with the disease every hour. Many of our young men see infection as a right of passage, an inevitable coming of age. I hear of them seeking the disease as entree into the cool, queer inner circle that being negative denies them.In our effort to remove the stigma of having AIDS, have we created a culture of disease? We all see the ads for H.I.V. drugs. They illustrate hot muscular men living life to the fullest thanks to modern science. Other ads show couples holding hands, sending the message that the road to true love and happiness is being H.I.V. positive. Is that message: You're going to be O.K.? (Which is terrific.) Or is it: You want to be special? Get AIDS. H.I.V. equals popularity and acceptance. (Which would be tragic.)My heart goes out to all who have the infection. But while I pledge my energies and resources to the fight for a cure, quality care and justice, I still think we need to examine what we're teaching our gay, lesbian, transgender, bisexual and straight youth. In my opinion, the messages the drug companies are spreading are lies. The truth is that AIDS is not fun. It's not sexy or manageable. AIDS is a debilitating, deforming, terminal and incurable disease. H.I.V. drugs can bring on heart, kidney and liver disease, as well as a host of daily discomforts.Unlike the photos in the ads we see, most of my friends who are on drug cocktails are not having the time of their lives. They spend mornings in the bathroom throwing up or suffering from diarrhea. They spend afternoons at doctor's appointments, clinics and pharmacies. And they spend endless evenings planning their estates and trying to make ends meet because they are not well enough to support themselves and their new drug habit. And those are just the friends for whom the drugs work. For many women the cocktails are nothing but a drain on finance, internal organs and stamina. Even if the drugs were as effective as advertised, should we be creating a community of drug dependency? We have done a terrific job removing the stigma of having AIDS. But in doing so we've failed to eliminate the disease. H.I.V. is an almost completely avoidable infection. You need to be compliant in some very specific behaviors to be at risk. In fact, if every person now infected vowed that the disease ended with him, we could wipe out the ballooning number of new infections.Instead, we've sold our next generation into drug slavery and their destiny to medical researchers because we'd rather treat each other as sexual objects than as family. Thanks to the drug companies that have made billions of dollars off us, and to the medical community that has gained a captive audience to fill appointment books, and to AIDS charities that have become a career for many, we have created an industry of disease that would crumble if AIDS was cured in our community.I am calling for us to take back our lives and culture and to stop spreading the virus. I am calling for us to resist the normalization of disease and once again embrace health. I'm calling for an end to the false advertising for drugs and for us to stop minimizing the infection with cute little names like "the gift" or "the bug." I want to see an ad campaign showing a sexy man saying: I don't have H.I.V. I don't want to waste my life and resources on drugs. I am taking charge of my body, my health and my destiny. I am a negative gay role model.


Harvey Fierstein, who won the 2003 Tony Award for his performance in "Hairspray," is a commentator on "In the Life," a television series.

[neb_top]

david_nc, i am not able gain access to my email. thank you for the response. you can contact me at  js8jim @ msn dot com. thanks.

[allopathicholistic]

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.

For my life, both viewpoints and every viewpoint in-between are necessary. Just the other day I read a question in Living With about CMV - Have you tested positive for CMV? (link is here) And I was like "yeah I took the test" but then it dawned on me - Shit, even though the result was negative I still have to get RE-TESTED for CMV again and again for the rest of my life - oh and not just CMV but the other OI's too. Because I have H.I.effin'.V.

Thus, in 2007 I'm personally leaning toward thinking HIV is so *NOT* a manageable disease (whereas I was singing a different tune in 2006 for whatever reasons). The members who've had HIV since before HAART make me think about important issues with their posts, one issue being the fact that HIV, by definition, is the adversary of our immune systems, kind of like living in a house with no front door!! Or a bedsheet as a front door. Only a cure will change that! Then there are the equally huge issues like affordability of meds, possible regimen failure, the many types of discrimination, dwindling resources for PWHA's, etc. I need to know about these issues and the most learned and the most experienced are the ones I look to (the "old-timers"). I mean, who better right?? Good thing is: We can pick and choose what we want to absorb from any post we read here on these forums, i.e., we don't have to get huffy at every little thing. Pick and choose. Remain receptive, be selective!! When the seniors speak, I pay attention to what they say about AIDS activism and other huge life-with-HIV issues. And, furthering my point, generally speaking, I look "more" toward AIDS research/science for news/hope pertaining to the biological, while still taking into account the biological experiences of the old-timers

Edited to provide link to another thread

[Life]

                                                                           

Its been a year and half...  Its just a year and a half.   I still feel like I am sitting on the fence and truly not engaging the way I should.   I come down, test the waters and retreat.   But I always come back for more.   Probably just natural instincts at work here.   Zeb, this all to new for you and many others (and me).  Just know, you will come to terms with all of this.  You can take what you like, and leave the rest.  Make your own story out of this, not someone else's...  And when you do, make it a good one...  I truly NOW don't feel I will ever find a finish line in all of this.

[StrongGuy]

A very wise person told me early on when I joined here that debating this issue would never reach consensus, and that I shouldn't bother debating it. I was ready to take that advice until I got messgaes from people thanking me for speaking up. I realize now that he was right and there will never be consensus or middle ground.

All I know is I can't feel bad or apologize when my doctors tells me to plan for a long future and I trust my doctors, or when he tells me many of his patients are living full lives, or that I have friends, myself included, and a boyfriend who are managing their lives with HIV. I'm going on 7 years positive and I'm not putting money in my 401K for nothing.

I don't know anyone who is blissful or cavalier about it, and I would cut of a limb if it meant getting rid of this virus, but I'm not going to fake my experience or apologize or believe my meds are doomed to fail or I will most definitely get an OI or every HIV medication will surely ravage the body when no one knows that.

I understand now how terms like "chronic" and "managebable" piss people off. I was just reading an article today and it had a quote from a doctor who said:

Code: [Select]

AIDS was once considered a death sentence, but this is no longer the case for patients with access to the best medicines, who can often postpone by decades the fatal breakdown of their immune systems.
"HIV has gone from a holocaust, a killer, to a very chronic and manageable disease," said Dr. Lalezari, the independent researcher who lead the Maraviroc study. "I often tell my patients that they're going to have find something else to die from."

http://money.cnn.com/2007/02/28/news/companies/hiv/?postversion=2007022815
I see now how, from one viewpoint, the broadbrush aspects of these terms can be dismissive to those who are suffering and boil's people's blood. But I also feel trying to prevent people from using these terms and/or trying to put a ban on that language is impractical. Anyone who reads HIV articles sees it all the time.  Some people are going to use it and shouting that they shouldn't on this website (which only represents a tiny sliver of people Living with HIV), is not going to change the lexicon. It's not a battle, IMHO, that is going to be won.

All people can do is be honest about  their life experiences and try to respect other's life exeriences and not dismiss them and hope things get better for everyone - especially those who are suffering.

But debating this issue, as many of us have (and most definitely including myself) ad nauseum will never reach consensus. I realize that now - especially after seeing thread after thread going in circles week after week and month after month. Accept it and move on.

Peace!
Mike

[Mike89406]

"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?

Zeb,

 I don't have any fancy speeches for you. The question would be how much do you value you're own life? For me to find out I was HIV+ was a huge shock and I was depressed. I even thought what is there to look forward to?
  
   However with time acceptance can happen. Sure you never be the same you know that you'll probably live with HIV for the remainder of you're days. I happenned to be married when I found out but the strength of my family and feeling of belonging helped me become strong. I 'm even bettering myself by finishing college pretty soon.
  
    You shouldn't think that a pill alone will solve all you're problems (I hate taking pills) however its necessary with my bouts of health. Its important that you take better care of youreself exercise, eat better, sleep better those are the things that give you a clean bill of health and prolong you're life expectancy.
    
    Amazingly knowing that I am still physically fit can play softball, ski and just enjoying my life makes me realize I have so much more left in me and can live a happy life.  Not every day is pee-chee I have my share of bad days.

    What makes me different? Absolutley nothing I am POZ just like everyone else however I had to make a choice am I going to live a miserable life and wallow in self pity or other unproductive feelings? I cant live my life unhappy so I choose to enjoy as much as i can and with time realize that my body feels the same as when I was neg. Other things change from time to time.

     I am not an old timer but i have been surrounded by others who have been POZ for 1,2 5,10,20,20+ yrs. I have seen different things and different people with HIV different walks of life, and have seen more of my share of HIV+ guys getting married to a nice woman. Point is you only limit yourself being HIV+ by thinking you cant do the things you like and prosper in life with some happiness. I have been POZ for 5 yrs but have not been on here for most of that. I depended on HIV support groups, conderred with other POZ's at the ID clinic.

     My advice be encouraged and just learn from the various members of this forum. Were all unique and bring something good to the table.

[Bucko]

                                                                           

Its been a year and half...  Its just a year and a half.   I still feel like I am sitting on the fence and truly not engaging the way I should.   I come down, test the waters and retreat.   But I always come back for more.   Probably just natural instincts at work here.   Zeb, this all to new for you and many others (and me).  Just know, you will come to terms with all of this.  You can take what you like, and leave the rest.  Make your own story out of this, not someone else's...  And when you do, make it a good one...  I truly NOW don't feel I will ever find a finish line in all of this.

Don't fret, Eric. The finish line will find you when it's your time to cross it.

Brent
(Who sometimes feels like the last runner in a marathon)

[BKNYLivin]

Like others have said, I think most of us(if not all) have moments when we are "worried, scared and sad" as a result of being positive. How you choose to live with your diagnosis is of course a personal choice - I prefer to remain optimistic, but I know this virus sucks big time and is no picnic in the park. I believe it's important to do as much "research" as possible, apply that to my life/situation and form my own truth(which will invariably change with time).
Even though I'm a "newbie", I have lost a lot of friends to AIDS, I have held dying friends, seen people go through hell and also lost a lover. I was around in the '80s/early 90s when lots of gay men were dropping like flies. There are still many dying from AIDS today, so HIV/AIDS is not just a "manageable" condition for some even post HAART. For me it IS a big deal, but I refuse to let it ruin my life - I have bad days just like everyone else and deal with what I need to deal with.
I'm grateful for the medication today( I remember the AZT days) and I hope to live for many years to come, but I know it isn't necessarily going to be an easy journey. It is, however, a whole lot better for me than what I saw my friends go through. There is nothing cool about HIV, but we do have the power to decide how we are going to deal with it and we can all learn from and support each other(which is why I joined his forum).
 

[Cliff]

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.

I'm loving this!  So very true.

[sweetasmeli]

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.

Just thought it was worth repeating the lovely Alan's wise words again.

Zeb, you are not alone on your journey. We all get your worries, your fears, your sadness. I have leaned on so many people on these forums in this past year or so, I might not be where I am now, but for them. But I've also taken the steps to start living my life to the best of my ability. Lean on us, by all means. But also, if you want to start feeling empowered instead of overpowered, take those steps.

Hope today is less daunting than yesterday, even if only by a smidgen.

Warm thoughts
Melia

 

[Moffie65]

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?

Zeb,

I want to address you directly, as many here have. 

I want first to answer your totally ligitimate question.  You are scared and sad because you have now acquired a "viral protein" in your body, that for whatever reason, you never thought you would have to deal with.  Now you have it, and you are thrust into a world that you are totally unfamiliar with.  For whatever reason, it didn't enter your world that you were living and enjoying.  Now you are faced with uncertainty, and confusion about a subject that you thought you wouldn't have to face and deal with ever in your lifepath. 

Unfortunately, or possibly fortunately, now you must deal with what this viral protein has brought to your table.  I have to say first off, you are not HIV, but now HIV is a part of you and part of your body for the rest of your life.  The things you learn about this viral protein and the approaches you take to harness it's possible damage to your body, mind and spirit, are going to be the difference between you and the next person. 

I and a few other long term survivors have offered you a window to our present lives, not to terrify you, but to enlighten you.  You and others here, need to know how this viral protein has been dealt with, by people who have been dealing with it the longest, and that is why I offered up my VERY personal message, which I exchanged with two other members here in private.  It really made me nervous, because many other posters in this very thread who have responded, know me and know me very well.  They can attest to the fact that I have NEVER posted such a personal account here of my present challenges and issues.  It just isn't like me to be so revealing about my own life and my own very personal issues.  Hell, just ask some of those here, they will verify that, and they did so in their responses.  Alan, Lis, Jonathan, Matty and others here, are witness to my truths, and many of them I have met and come to admire and love in a very personal way.  They have not even been privy to these thoughts offered here, as I have always been very private in sharing my very intimate life issues. 

Others who "THINK" they know and understand me have attacked me for entering your very open conversation about how HIV has/is impacting my life and one poster even called me a liar for saying that I hoped that his life experience with HIV would be a good one and one that had no rough spots.  Unfortunately what they don't understand is that after the better part of 24 years living with this viral protein, and a couple visits to deaths door; I just don't have the time to  sit in front of my computer here in the beauty of the Arizona desert and plant keystrokes here that are lies.  I deal with life very honestly and very straightforward.  Some don't like that, and some don't want to see the reality that this protein can play with your body.  I however, will never bullshit you with this bug.  There is not one reason I can think of for me to not celebrate the last 24 years as years of victory, accomplishment and progress.

I have had an exquisite life with HIV, but it didn't happen by me sitting around and denying what the bug can and has done to my body.  I suppose there is a place for people to think that by always accepting things that are blantly posted on your top post, their lives will somehow be easier than the norm, but the reality is that this is a virulent bug that as we speak is wreaking havoc with all our bodies.  How we deal with that fact is what will prove the mettle of the host. 

I choose to be a nasty host, I choose to be a host that dosen't accept the damage that it has done to my body.  However, the first thing you said about living to your "Golden Years" must be tempered with the reality that those Golden Years might just be a bit tarnished after 20 or 30 years of battling what it will do to your body. 

I trust you now understand why I posted my letter, and that it was to share with you that what we are going through is valid, true and possibly a window to what some of you might have to deal with in the future.  I highly recommend that you spend time studying this disease.  In this case, knowledge is power, and that power will help you to stay healthy, question the statements of doctors and hopefully in the end, assure you that you will be a proud father at your children's college graduation, and witness to your grandchildren's accomplishments.  This I would wish for you, and I truly hope and pray that this will be the case because not only do I know it is now possible, but in my heart, I know that nobody needs to loose a parent or partner to this nasty piece of shit we all call HIV.  Much of that trip is up to you, and the knowledge you gain along the way, so now it is your turn to start getting to the point that HIV is just a very minor part of who you are as a whole person. 

Embrace this bug, it cannot be denied, and it will damage you beyond what you might think if you don't learn early to deal with it and not let it get the best of you.  How can you possibly deny your eye color, or anything that is a part of your body?  You can't, so don't deny HIV.  It is now part of your existence for the rest of your life.  To let that depress you, is giving in to it.  Not something that a proud father and husband can do or even entertain.  Stand up and be counted.  Accept your HIV with pride and with the assurance that you will certainly be victorious and you will live your life with the goal of seeing those grandchildren, and with luck see them married off also.

Love,

[Ihavehope]

My mother has Diabetes and is doing wonderful on her medication. She has been on the pills for about 10 years now. On the other hand my father's best friend is diabetic with no access to meds because he lives in a thrid world country and is very poor had his leg cut off and is literally begging in the streets of his hometown because he can not work. My grandmother was diabetic and lived until she was 78 without no medication because she refused to take med and died a horrific death. Stroke, Coma for days and tons of other issues. My uncle  is also living with diabetes and lost 40 lbs and looks like he hasn't slept in days because he is taking herbs and natural remedies which he says works for him better than meds and poking himself. My great uncle has diabetes as well and he went blind at 70 years old because his Macho persona didn't stop drinking and alcohol turns into sugar and he was not consistent with his doctor's visits. So people experience chronic disease very differently and I am glad my mother is one person who watches what she eats on a daily basis, exercises, visits a good doctor, takes her meds everyday, monitors her blood sugar and is doing well. She gets scared and cries when she hears the horrific experiences our friends and family have gone through with this disease which makes her want to take better care of herself.

I think HIV can be compared to Diabetes in the sense that it does affect each of us very differently and one person's experience can not determine everyone's future.

[AlanBama]

I think that's a forum record for me, quoted 3 times in the same thread!   Be careful, you folks will give an old guy a big head....

Zeb,  I thought about it last night....here's my advice for you:

Celebrate the good days.
Struggle through the bad days.
Love your family and your friends with all your heart.

None of us deserve the hand we were dealt.   But we were dealt it, so play it and get on with it.   Life is so short, way too short to be arguing amongst ourselves.  Our time can be spent in much better ways!

Peace,
Alan 

[AustinWesley]

Zeb,

 I don't have any fancy speeches for you. The question would be how much do you value you're own life? For me to find out I was HIV+ was a huge shock and I was depressed. I even thought what is there to look forward to?
  
   However with time acceptance can happen. Sure you never be the same you know that you'll probably live with HIV for the remainder of you're days. I happenned to be married when I found out but the strength of my family and feeling of belonging helped me become strong. I 'm even bettering myself by finishing college pretty soon.
  
    You shouldn't think that a pill alone will solve all you're problems (I hate taking pills) however its necessary with my bouts of health. Its important that you take better care of youreself exercise, eat better, sleep better those are the things that give you a clean bill of health and prolong you're life expectancy.
    
    Amazingly knowing that I am still physically fit can play softball, ski and just enjoying my life makes me realize I have so much more left in me and can live a happy life.  Not every day is pee-chee I have my share of bad days.

   What makes me different? Absolutley nothing I am POZ just like everyone else however I had to make a choice am I going to live a miserable life and wallow in self pity or other unproductive feelings? I cant live my life unhappy so I choose to enjoy as much as i can and with time realize that my body feels the same as when I was neg. Other things change from time to time.
     I am not an old timer but i have been surrounded by others who have been POZ for 1,2 5,10,20,20+ yrs. I have seen different things and different people with HIV different walks of life, and have seen more of my share of HIV+ guys getting married to a nice woman. Point is you only limit yourself being HIV+ by thinking you cant do the things you like and prosper in life with some happiness. I have been POZ for 5 yrs but have not been on here for most of that. I depended on HIV support groups, conderred with other POZ's at the ID clinic.

     My advice be encouraged and just learn from the various members of this forum. Were all unique and bring something good to the table.

Hey Zeb,

Mike has given you some excellent advice.   Unfortunately, there are others that feel this is the "ALL ABOUT ME" section!   

You are entitled to your feelings.   But you must make a choice.   Wallow in self pity and be depressed or move on with life!

Big Hugs,

Wesley

[Jeffreyj]

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

I believe this was the original post???

With that in mind:

The reality is that HIV does this to all of us at one point or another. Worried, scared and sad. Wow, three emotions that most of us deal with. I not sure we can blame HIV for this, plenty of healthy NEG people have to deal with emotions throughout their lives.

Zeb, when you ask a forum like this one, expect the good, the bad and the ugly. As you have seen, we all have dealt with these emotions, and HIV, in our own ways. On top of that, You surely must know by now that HIV/AIDS is one hell of a complicated deal.

By reading and educating yourself may help you to get the "scared " part of your question somewhat under control. After all, it is ignorance that breeds fear. So the more you know...

The sad part: This is perhaps more destructive then fear. Try to do whatever you can to get over this. There is nothing worse then feeling sad. It stops you from moving forward in a positive way. It has been my experience that those with good attitudes and positive outlooks live longer, and more productive lives. I have seen people tell me "I'm going to die, so I may as well do drugs." Guess what? Their wish was fulfilled. So be sad now if you must, but please get over it soon as possible.

Worry: I don't know anyone who doesn't worry at one time or another. But I think if you work out the scared and sad feelings, the worry will take care of itself.

You have really hit on the core issues of HIV/AIDS.And really of LIFE itself.  I am no one special, I'm no shrink or DR. I am just a regular guy who has been fortunate enough to have survived HIV/AIDS for 23 years now.

There is no easy answer to your question: I can only share my experiences, and tell you what has worked for me. Worry, sadness and fear are things that I have dealt with throughout my years. It is something that I have worked on CONSTANTLY. Some days are better then others. But that's life. I find that sharing and talking with others makes me feel good. I think that is what Tim was trying to do, to share with you his experiences.

I truly feel you are a very fortunate person. You got HIV, through MY eyes, at a damn good time. The drugs are so much better, people are living longer. Even more in portant then that, You have people you can talk to who have gone through it all. You can talk to them and ask anything you want. Wow, what a luxury that is! In the 80's, WE HAD NOBODY. I was living in complete FEAR, as my diagnoses was DEATH. And it is safe to say that caused me reason to be sad and worry just a bit.

My point is, if you can understand the history and educate yourself on the past of this dreadful epidemic, maybe, just Maybe that fact alone will make you feel a little less sad, and a little less worried, and even a little less scared.

From my perspective you don't have it as bad as you think. And my point is, by educating yourself and learning what came before you, just might be the key to solve your question:

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

Well that was the best answer I could come up with. I hope it helps.

All The Best!
Jeff

[zeb]

To all of you,

Really thanks a lot for your replies. Really HIV is a virus which comes with a diversity of side effects (physically and mentally).
Well, I'm overwhelmed by all the responses and really - even with the non sugar coated views - it gives me support.

So my next step is very simple: this evening i'm going to watch Looney Tunes with my son, he may stay up late in his pyamas and we both will enjoy the tv, chips and lemonade.

...and still i'm reading your replies and i'm really touched by the way how many of you are worried about me and really are giving me the sincerest and best advice! Really it gives me strenght!

Thank you all so very much,
Zeb

[sweetasmeli]

Zeb, Looney Tunes with your son is a great place to start!
Giggle, eat chips together, drink lemonade and don't forget to give him tons of cuddles!

My comforters in the last 48 hours have been The Wizard of Oz and Charlie and the Chocolate Factory.
May even dig out Its A Wonderful Life for this evening...

Enjoy enjoy enjoy! That's what life is for!

Wishing you the best weekend!

Melia

[Ihavehope]

To all of you,

Really thanks a lot for your replies. Really HIV is a virus which comes with a diversity of side effects (physically and mentally).
Well, I'm overwhelmed by all the responses and really - even with the non sugar coated views - it gives me support.

So my next step is very simple: this evening i'm going to watch Looney Tunes with my son, he may stay up late in his pyamas and we both will enjoy the tv, chips and lemonade.

...and still i'm reading your replies and i'm really touched by the way how many of you are worried about me and really are giving me the sincerest and best advice! Really it gives me strenght!

Thank you all so very much,
Zeb

I love Looney Tunes, what channel are they on tonight? lolz

I think we all still have a kid inside and HIV is the boogie man who is out to eat us and we are scared. It's perfectly normal for us to be afraid of this disease. I for one, will be so pissed off if I am already thinking of dying soon and I end up living till I am 80 years old. What a waste of years concentrating on death right? We all are going to die, unfortunately many of us now know what we will die of, which is mindblowing and can destroy our emotional well being. Just try to relax as much as you can and play with your kids and have a nice time.

[Poz-3/6/07]

As a newly diagnosed positive man, I wanted to say thanks to our "verterans" of this virus.
I appreciate the "tough to hear" honesty from those that have battled this disease and are living still in their "golden years".

It gives us all hope that you continue to stay fighting the battle, and I want to personally say thank you for sharing your wisdom to each of us.

I pray that this community doesnt turn into a war between those that are new with the disease and those that have had it for multiple years.

That would destroy the very "cure" for what we all are going through together.
Staying positive is difficult at times, however with a community such as this, we can help each other get through the storms and praise the good times.

To the "Old Timers".....keep being blunt and honest and tell us your story. You must be counted and know that we are proud of your strength to continue the fight.

You give us hope !!!!!

Im 2 months infected with the bug, and trying to stay positive about being positive.

3-6-07...the journey begins....

[ndrew]

Hi Zeb,

Well I still feel worried, sad and scared, but not like before.  It's really great to come here and share with other positive folk.  I have become very practical about life.  This is what I want and this is how I will go about it.  For instance, I want to better manage stress and have taken some steps that have helped with this.  Lately I have been thinking about the future.  I need to start planning for something, as I know the chances are pretty high I will be around for some time, but with the potential for issues that effect my health and quality of life.  This is what I am learning here, that and enjoying the moment with my two cats, lifting weights and putting new doorknobs on the doors in my pad.

Bests,
Drew

[Almost2late]

This really got to me especially this quote.. yeah, I know its old, I don't care, so what.. at least they're keeping it real..

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.

I feel like I'm becoming a ghost

[zach]

how did you even stumble on this old thread?

i have wondered how jk is doin, when i first joined he and tim were the ATLiens that reached out to me

why do you feel like a ghost? do you see yourself in what jk wrote? like everything else about this virus/disease, it gets better in time.

[bmancanfly]

And yet, with the benefit of hindsight, most of the predictions of doom and gloom in this thread turned out to be largely wrong.

Why the zombie thread resurrection?

[Almost2late]

why do you feel like a ghost? do you see yourself in what jk wrote? like everything else about this virus/disease, it gets better in time.

And yet, with the benefit of hindsight, most of the predictions of doom and gloom in this thread turned out to be largely wrong.

Why the zombie thread resurrection?

Guess I was feeling dead that day, didn't get much sleep, and this thread spoke to me.. Also wondered how these people were doing now.. I saw nothing wrong with that.

[Joe K]

Guess I was feeling dead that day, didn't get much sleep, and this thread spoke to me.. Also wondered how these people were doing now.. I saw nothing wrong with that.

The last post to this thread was in March 2007.  We prefer that you start a new thread, rather than bringing a "zombie" thread back to life, when most of the posters are most likely not going to respond.

Thank you for your cooperation.

Joe

[Almost2late]

The last post to this thread was in March 2007.  We prefer that you start a new thread, rather than bringing a "zombie" thread back to life, when most of the posters are most likely not going to respond.

Did I break a rule?.. I've seen this done before and no one had a problem with it.. besides I did get responses.. Why are you picking on me?

[Joe K]

Did I break a rule?.. I've seen this done before and no one had a problem with it.. besides I did get responses.. Why are you picking on me?

I explained why we prefer you start a new thread, which you could have done and still expressed how you were feeling at the time.  The responses you received also questioned why you would resurrect an old thread as well.  I am explaining a policy of the forums and I am not picking on you by explaining policy.

Joe 

[Almost2late]

I explained why we prefer you start a new thread, which you could have done and still expressed how you were feeling at the time.  The responses you received also questioned why you would resurrect an old thread as well.  I am explaining a policy of the forums and I am not picking on you by explaining policy.

Joe

I looked all over for this policy and I don't see it.. Where is it?

[Joe K]

I looked all over for this policy and I don't see it.. Where is it?

It's a policy of the forums, not a part of the Terms of Service.  I am asking you to not resurrect old threads, when starting a new thread would serve the same purpose.

Thank you for your cooperation.

Joe

[Almost2late]

It's a policy of the forums, not a part of the Terms of Service.  I am asking you to not resurrect old threads, when starting a new thread would serve the same purpose.

I see, so its not written anywhere.. Why is this a policy? I mean, I'm being totally respectful to the posters in the thread.. I am interested in what they said here.. I don't understand why this is so taboo.. So what is the unwritten amount of time that is too taboo to comment on a thread?

[mitch777]

I for one don't see why such a big deal is being made of someone who found an old thread that resonated with him and wanted to respond. Who is it hurting anyway?

I understand the "suggested" forum policy but Geez Louise.