Poz Guys: How Has HIV Changed Your Life? (aside from sex)

[komfort570]

Admin Note: I've copied this post from posted in another thread earlier in the day into this thread. I'm guessing it's what inspired this thread. It's a bit out of order, but relevant to the thread...

I think most poz guys just dont like to talk about the bad stuff. The Daily Meds..having to worry everytime someone has a cold. For me my biggest worry is becoming injured and making sure I alert someone to my status. A year ago I was playing softball and took a hopper right to my noes. Needless to say I busted my nose and was gushing blood everywhere. I had to act like I didnt need help and keep everyone away while I found a towel and then had a friend drive me to the hospital. I wont even go into how the hospital staff treats you after they find out you are poz. I am a relatively healthy person but it definitely has taken some away from me. Many say being Poz is just so freeing...but I am here to tell you there is nothing freeing about being poz..you are just a slave to a different master after you become poz...

[PhoenixGeoff]

Since there are a lot of chasers or guys who don't care about status around here, I thought it might be useful for them to hear from those of us who are poz about how HIV has changed our lives, for the better, for the worse, or just changed things period.

We've already heard a fair bit about how many guys approach sex and the quality and quantity of sex we may have after converting, so let's keep sex out of this particular conversation. Anything else is fair game though: diet, exercise, spirituality, work, money, relationships, whatever.

And maybe nothing's really changed for you. Let's hear about that too.

[PhoenixGeoff]

I'll start with one change for me that's kind of crept up on me. It really struck me as I was making dinner tonight (Steamed broccoli, carrots and peppers; lightly fried onions and garlic; brown rice; my own Asian sauce).

In general, my diet is a hell of a lot better than it used to be. I cut out soda and fast food some time ago (I almost always drink water; if not that I drink juices). I eat a lot more fruits and vegetables and high fiber foods (and this coming from a kid who refused to touch vegetables growing up). I really reduced the meat I eat, and that is a lot more likely to be chicken or fish (I love sushi!) rather than beef.

I think a big part of it was when I looked around at the guys who survived long enough to make it onto the new meds that came out in the mid-90s. Almost all of them seemed to take very good care of themselves especially as far as diet went. Another part comes from the regular doctor visits, every three months. I probably would not have been paying anywhere near as much attention to my weight, my cholesterol, my blood pressure, etc. if I wasn't going in to get my CD4 and viral load counts all the time.

One nice side effect of this is that I've dropped a fair amount of weight since I started eating better, about 30 pounds or so, without really putting myself on a "diet" or watching how much I was eating. I just cut out the crap and upped the good stuff. I think the extra fiber is largely responsible for the weight loss (I started paying closer attention to that when my cholesterol and triglycerides started edging up, probably as a result of being on my meds for a few years as well as simply aging). I eat far less than I used to and still feel full.

And the funny thing is, I really don't miss the burgers and fries and pizza and all that too much. Sure, I have them from time to time at a beer bust or a friend's house. But it's now just once or twice a month instead of a few times a week. And I've noticed now that if I do happen to grab a meal at McDonald's because I'm in a hurry, I almost always regret it: I feel kind of sick for a couple of days afterwards.

So that's one huge improvement that HIV helped trigger for me. Sure I could have done it while I was still neg, but HIV really gave me the incentive the change in this department.

[pozbear]

I tested positive in 1989, although I'm fairly certain I sero-converted in 1985. And I can tell you things definitely change and your perception changes over time, and although I've come to worry about things less, HIV is always there in the background.

I'm astounded when I hear about bug chasers or guys wanting to join the family. I just don't think that they've thought things through. And even if they think they have, they're certainly in for a few surprises along the way.

Here's some random thoughts:

I was on a cocktail a few years ago that left me unable to fart. I mean I could fart, but I was just never really sure if I was going to end up with a surprise in my shorts. I started having to wear underwear to bed. I lived like that for three years.

I had a job with benefits, but I hated the job. I wanted to quit, but didn't feel I could because I needed the benefits for meds. I stayed at a job I hated for two years because I needed meds. What impact does that have on your outlook and emotionally well being. Eventually I just quit and my meds ran out. Now, I'm not on the cocktail. I probably should be, and it's always in the back of my mind. I'm trying to sort this out, but it's complicated and personal.

I cruise bareback sites, from time to time, but it's frustrating and disappointing that so many of the guys on bareback profile sites are also meth heads and party boys. So I find hooking up on those sites is difficult. If we're not dealing with sifting out the drug users, there's other bullshit to deal with: guys screwing around on their lovers and not being honest, guys not wanting to post pics because they're ashamed, guys saying their tops but can't get an erection, etc. I have managed to find one fuck buddy, but I've had to entertain lots of crap in the process.

Every time I get a bump, a mark, a cyst, a cold, I often think: Is this is? Is this the beginning of something more challenging? Who wants to live like this?

Because I'm a long-term survivor, I've lost a lot of people. I also have witnessed the ever-changing landscape in my neighbourhood. I've seen men move from super hot to skinny, gaunt men with rashes on their faces, the loss of body fat in their faces, some have grown humps on their backs, they've lost their asses. And there's a double-edged sword, because the cocktail has extended our lives, many men's bodies are changing not only because of HIV and cocktail side effects, but just because of the aging process. I can't tell you how many men I still see when I first moved down to the gaybourhood in my thirties. Men who thought they were too beautiful to give me a second look, and now, after years on the cocktail and hitting their fifites, they're not so pretty anymore. Suddenly, I'm looking more interesting.

I also find the whole HIV thing sad. Back when I became infected, gay men quit their jobs, went on disability, and hoped for the best. In spite of advances and in spite of meds improving our long-term survivability, HIV has created a whole generation of men who are locked into the disability lifestyle. They can't go back to work because they need meds, so they stay on disability. They often live on next to no money, they have no long-term goals, they hang out at the local bars hoping to win a $100 bingo game so they can have some extra money for smokes or food.

When I tested positive, I was told I'd be dead in two years. In 1989 there was no treatment. I didn't plan for the future, so here I am pushing 50 with no retirement plan. That's certainly one big thing that crept up and bit me in the ass.

Anyway, enough for now.

Pozbear

[rawTOP]

Admin Note: A bit of disclosure - PozBear is a friend of mine. (Welcome to Breeding Zone PozBear!) I asked him to post his thoughts 'cause more than once we've discussed how my promotion of bareback porn glamorizes being poz, and the silence of poz men about their day to day lives leaves people who are considering becoming poz with a lopsided picture of what life will be like... They see all the great sex, but don't understand all the other hassles and complications. I thought this thread would be a great opportunity for a little bit of balance.

I had a job with benefits, but I hated the job. I wanted to quit, but didn't feel I could because I needed the benefits for meds. I stayed at a job I hated for two years because I needed meds. What impact does that have on your outlook and emotionally well being. Eventually I just quit and my meds ran out. Now, I'm not on the cocktail. I probably should be, and it's always in the back of my mind. I'm trying to sort this out, but it's complicated and personal.

To an American that seems odd - we're always told the Canadian health care system covers everything. Does it not cover drugs? So you get all your tests, doctor visits and hospital stays for free, but they won't give you the drugs to keep you healthy and out of the hospital? Does that lead to guys taking the less expensive cocktails - the ones that aren't as modern and cause physical side-effects like facial wasting? Are a lot of Canadian poz guys like you and just don't take meds? How much would your meds cost you if you did take them?

I haven't seen anything but New York City's way of doing things and from what I hear we have one of the more compassionate systems. Here if you make a small enough amount of money (and don't have a lot of assets) then everything is pretty much covered for you, including high quality, modern cocktails. BUT the issue is you can't make much money (which goes to your points below). But as you make more money you're probably covered by private insurance which would also cover good, modern cocktails. But people who are self-employed / freelancing who have some assets are stuck in a situation like yours. Decent health insurance (including a prescription plan) for an individual costs about $800-$1000/month (or you can get crappy insurance for $350/mo through an organization of freelancers). Oddly, if you start a business and have at least two people on health insurance you can cover two people for the same $800-$1000.

I also find the whole HIV thing sad. Back when I became infected, gay men quit their jobs, went on disability, and hoped for the best. In spite of advances and in spite of meds improving our long-term survivability, HIV has created a whole generation of men who are locked into the disability lifestyle. They can't go back to work because they need meds, so they stay on disability. They often live on next to no money, they have no long-term goals, they hang out at the local bars hoping to win a $100 bingo game so they can have some extra money for smokes or food.

When I tested positive, I was told I'd be dead in two years. In 1989 there was no treatment. I didn't plan for the future, so here I am pushing 50 with no retirement plan. That's certainly one big thing that crept up and bit me in the ass.

That is sad, and it makes me wonder how many of the guys on Bareback That Hole (which is filmed largely in Toronto) fit your description of guys trapped on disability. Do other Canadian cities have better disability systems or is the system mandated by your federal government? In the US our federal government gives a lot of funding to welfare, but doesn't completely fund it. That leaves local and state governments able to change things to suit local situations. It also means gay men who are poz can move to a city (SF, NYC, etc.) that has a disability system that takes proper care of them. I always feel a little weird when I see young poz guys in NYC going on disability, but at least the safety net exists and the guys are allowed to work while getting their disability benefits and there's a path to get off disability to have a career, retirement savings, etc.

[pozbear]

Admin Note: To an American that seems odd - we're always told the Canadian health care system covers everything. Does it not cover drugs? So you get all your tests, doctor visits and hospital stays for free, but they won't give you the drugs to keep you healthy and out of the hospital?

No, that's not the case. There is a catostrophic drug plan and plenty of guys use it, most do I would say. And it does cover most of your drug costs; however, there is a larger-than-$25 copay. The reasons I'm not using it are personal and I'm not willing to discuss them in an open forum like this.

The Canadian health care system doesn't cover everything. But it covers most things. HIV meds would be covered under the plan, but there may be drugs (more experimental ones) that they might not cover. My aunt recently needed three drugs for her eyes, the government plan covered one, but not the other two. (I guess they'd rather you go blind and have to take care of you on welfare than pay for a couple of drugs to keep you from losing your site.) If you need an eye test to see if you need glasses, you pay; if you're seeing an eye doctor because you're a diabetic and you need your eyes checked, they pay.

If you want to circumcize your kid, you pay; if you need bypass surgery, they pay. If you want a skin tag removed, I think you have to pay; but if you're poz, they'll pay. Still, most Canadians on a day-to-day basis don't pay for much where health care is concerned.

Cheers

Pozbear

[RawPozLust]

For me, having HIV has been neither a blessing nor a curse. It just IS, and living with it has largely been more about my values and my outlook on life than about my health.

Yeah, sure, it does have an impact on my health. But being vigilant about my physical, emotional and financial well-being have enabled me not only to survive, but thrive. I'm fortunate today to live with better health, fitness and self-awareness than many people without HIV -- or cancer, diabetes, COPD or any other chronic illness.

And yes, definitely, I have an insatiable fetish that proudly celebrates poz sex and AIDS -- something that many people find taboo. But I have never cared at all what other people think about my sexual orientation nor about what I enjoy sharing with another informed and consenting adult.

I realize each person is unique, and I'm not passing judgment on how others live with HIV. I'm simply stating my own experience in response to the thread topic.

[PhoenixGeoff]

I'm glad I read through pozbear's posts. It's particularly interesting to me because I came out in Toronto around 1990. My first partner (we lived near the old Maple Leaf Gardens at the south end of the "gay ghetto" for a time; he still lives in T.O.) almost died from untreated HIV some years ago (he's doing much better now but lives on disability).

I have to wonder if the difference in age between us (and date of diagnosis) plays a huge role in our different approaches to HIV. I was just beginning what would become my coming out process around the same time pozbear was diagnosed. The men I met knew people who had died and did their best to impress upon me the need for safe sex. But I was also insulated from the direct experience of the disease. I wasn't close to anyone I knew to have HIV (although I did learn that a couple of former co-workers in Toronto had died during a brief visit back after joining the Army). So I got what I saw as well-meaning hectoring without any direct experience of the consequences of "unsafe" sex.

My time in the Army insulated me as well. I had no close gay friends between 1995 and 2000 and only a handful of acquaintances that I hung out with with any consistency at all. And so, again, I had no direct experience of anyone dealing with HIV.

Of course, by the time I left the Army in 2000, treatments were much, much better. So I have mostly missed the entire AIDS crisis and its lingering effects in one way or another for my entire life as a gay man. I always knew that it was out there; I always knew my behavior was becoming more and more reckless; but there's something about me that kept me from listening to what I was being told by those who had lived through it. Or maybe I just got tired of hearing it.

One huge difference between us is that disability was never offered to me as an option. It was simply expected that I would continue to study (I was diagnosed while a college student after my discharge) and then work. My coverage has always been provided by either the VA or private insurance through work. I've also not worried about losing health insurance; I've had the VA to fall back on or, failing that, locally administered programs that specialize in HIV treatment.

So all in all, my experience of HIV has not been the huge, earth-shattering thing that friends who were out in the late '80s remember. That's not to say that my diagnosis didn't inspire a great deal of introspection (it was the first time in my life that I knew--really knew--that I would someday die). But it proved to be something of anti-climax, compared with everything I'd heard about AIDS in the media of the '80s and from gay men I'd met when I first came out.

To me, now, it's simply one of any number of manageable medical conditions. The medications can be annoying. It's a pain ensuring that treatment is taken care of. But it's not turned out to be this big, huge, scary thing that's completely marred my life.

[PhoenixGeoff]

Pozbear, if I may, a directly personal, if public, appeal. Find a way to get yourself back on the meds. I know these ways exist (like I said, I have an HIV+ ex I'm in touch with living in Toronto). I don't know your personal reasons and won't ask what they are, but I do know that choosing a slow-motion suicide in the form of not treating your HIV doesn't help anyone at all (and I know this because I've had to look at some of my own past actions in a similar light).

Dammit man, if it means I have to go back up there myself to be a half-decent barebacking poz top, tell me.

The world needs men like you who actually lived through what it was like. Maybe not to reach the thick-headed numbskulls like me--I'm beyond hope--but to help keep living memory of what AIDS did to us alive. We've already lost too many guys like you.

[pozbear]

Thanks mascdnvrman, I'm working on it. That was a thoughtful piece you wrote. Thanks for sharing it.

[PhoenixGeoff]

Just came across this. It's worth reading as an example of just how bad things can get. Reading this makes me very grateful to be living as well as I do.

Does it get this bad for everyone with HIV? To tell you the truth, I don't know. The writer has been living with it for quite some time, and it's possible that he's running into some of the longer-term complications that will eventually catch up with me as well. Or perhaps he's just unlucky (the combination of HIV, diabetes and probably untreated depression suggests that that might be the case)

And to be sure, a lot of his trouble stems not from HIV but from homophobia, both institutional (the problems with his partner's estate) and personal (the terrible if all too common attitudes of both his partner's family and his own siblings).

Still, I do take one clear point from this: living with HIV means that many options you may have right now will close. Where you live (forget about retiring to a rural area, either to get some peace for yourself or to live with or look after family). What kind of work you can do. Whether you even can work or not .

And disability sounds considerably less charming when you hear about the hoops you have to jump through in order to receive a pittance.

[BadBoyBtm]

Thanks for this thread. I'm newly poz, and it's good to hear a frank discussion of things to watch out for. Now I'm just hoping to start having a lot of hot bareback sex to make up for the downsides.

[rawTOP]

Hey BadBoyBrian - Welcome to Breeding Zone!

Glad your maximizing the positives of being positive... A lot of guys fail to do that and then all that's left are negatives...

[PhoenixGeoff]

Glad your maximizing the positives of being positive... A lot of guys fail to do that and then all that's left are negatives...

Personally, I gotta say that all of the really sick, twisted, perverted, cum-swapping, poz pigs out there is a HUGE plus to HIV! It's good to really feel like your among your own kind

[ironix]

I have been HIV+ for 15 years now – I am 32. After my few initial viral load tests my doctor told me I probably wouldn't need to take any medication for 10 years or more. Here I am 15 years later and I still haven't started taking any medication. Apparently this has something to do with my genetics. I now only get my viral load done every year or so. However, more recently my doctor has suggested that I do start taking medication because of something to do with it incorporating itself into my DNA. I'm really not sure if I want to take his advice on this or not and there is practically zero information out there when it comes to people in similar situations.

I was in a relationship when I tested positive; he was 11 years older than me and negative. Because he was willing to say with me I ended up staying in that relationship for nearly 10 years. I feared that if I left him I wouldn't find anyone else who'd want me. In fact, during those 10 years we never used condoms and he always remained negative (we have the same doctor). Apparently he's another anomaly. In the end he became a raving alcoholic and I was cheating on him left right and centre. It was a messy breakup. =p

Apart from fearing that nobody would want me as damaged goods, being HIV+ hasn't really impacted my life as an actual medical condition – well, yet anyhow. It has, however, impacted my life as a social stigma. After nearly 6 years of being single I would like to find someone with whom to share my life and being HIV+ makes that more difficult than I would like. I have tried meeting other HIV+ guys, but I haven't really hit it off with any of them. I tend to like geeky/smart guys as I am a huge physics/computer geek myself, but these types of guys tend to be few and far between in the gay community, yet alone within the subset of gay guys who are HIV+.

There is a ray of hope though! I recently met a super cute and smart guy who's finishing off his degree (8 years younger than me) and we've had a few successful dates. My status doesn't seem to bother him and we get along as though we've known each other for years. I really like him and hope this goes somewhere. I suppose I'll just have to get used to using condoms again. =D