Living with HIV

[surprise]

Hi Niceone,

I like in the UK so luckily my treatment wont cost me anything, although I am fortunate enough to have health insurance anyway through my work.

I understand you have to tell your GP and dentist, but who else has everyone told? I have two close friends (one went with me, the other being his wife) who i told but im scared of the stigma attached to it and how people would react if I did tell them because so many people are completely uneducated about it over here. Not that I want to go tell everyone but there are some people that I guess I would feel like I am keeping something from them. I dunno. I think its time for a nap.

Hi, I hope you are doing well today. I've known that I've had HIV for almost two years. Initially, I only told those I felt needed to know. This included a couple of very close friends, sexual partners, dentist, therapist, pretty much all of my doctors are aware.

I too was and still am afraid of the stigma. Although, I've learned that it’s not so bad. Recently, I felt comfortable enough to tell a few more of my friends and I received a warm reception and lots of questions. For sexual partners, I tell everyone, some have said they were no longer interested and some said it’s okay as long as we are safe. Because of the experiences I've had I'm a lot more cautious who I choice to be friends with and who I choice to have sex with. I try to surround myself with mature, educated individuals who are understanding and supportive.

The first six month or so of this, I didn't tell anyone but my doctors, I chose to keep it to myself and found myself feeling very isolated and lonely. I participated in many social events and had a few close friends but just didn't feel like they really knew me because of the secret I was holding. I should also note that one month after finding out I had HIV I moved to a different country for work. So I had a fresh start, which has allowed me to cope with this on my own until I felt more comfortable enough to be open about it.

I would suggest that you move at your pace when it comes to telling friends and family. You definitely need to be upfront with sexual partners and your health care providers. I suggest being upfront with sexual partners to reduce the impact of any negative reactions. If I feel as though a conversation is leading in the direction of sex, regardless of whether I intend to meet this person or not, I inform them of my status so neither of us gets too invested. I also suggest seeing a therapist or joining a support group of some kind. I dealt with this on my own, but I’ve had years of therapy prior to this and have developed some healthy coping skills. Some things that worked for me was staying active, I’ve started graduate school, I recently started working out again and when I feel the need I take time for myself. I attempt to maintain self-awareness in regard to my feelings and embrace whatever it is that is coming forth at the moment. There have been a few days where I’ve had to leave my desk because I began to cry, it wasn’t always a sad cry, but I embrace the feeling, compose myself and keep pressing forward.

Gather as much information about HIV and treatment as you can, follow the advice of your doctor and if put on meds take them as directed. I’ve been fortunate enough to have relatively normal CD4 levels and no detectable viral since I found out. I can only attribute that to living a healthy lifestyle and the higher power that’s watching over me.

 

[D_Sal_Manilla]

I'm sorry and wish the best. and don't be angry at yourself like you said. These things can happen to all of us and we just have to keep our heads up; keep moving.

As another human being I send you my love.

 

[BBB2.5]

Op...just enjoy life, take your medications. Be honest with those who you might have sexual contact with. If you drink and party hard, cut back some. If do all this, you will live to be an old man. I know from experience, April will be my 20th year of living with HIV/AIDS ...

You noticed I used the word "LIVING"....because that is what you will be doing.

When you are ready, I feel you should tell your parents. It's not fair to them, parents are all we have in this world, just keep that in mind.

 

[alan_b]

Update: Day 17 (I think) on Atripla.

So the first week sucked. Not too bad, but not pleasant all the same. Sleep is either good or bad, with alot of waking up at 4am for some reason. Felt drunk/hungover in the mornings and generally not well for most of the day.

Week 2 - Big improvement, back at work and coping well. Sleep still erratic.

Week 3, Day 16 - Absolutely overcome by emotion. Could barely do simple tasks in work. Lots of tears and an even bigger tantrum. Im off for the rest of this week to get my head together. I understand atripla can do this, but its probably not helped by me trying to ignore how I feel emotionally on a daily basis.

Im back at the clinic on Tuesday to get bloods drawn, so will find out a few days after what the results are.

Hope you are all well. Play safe guys.

 

[spoon]

Alan-

I have been infected since 1984, when I got a little too drunk and brought someone home from a bar who didn't believe that I'm a non-versatile top. He held me down, rode me roughly, came and left. About two weeks later I had the worst flu of my life which lasted for ten days.

As there were no effective treatment options, I declined getting tested at the time, even as everyone I knew seemed to be dropping like flies: I stopped counting the losses at 60, and it was still not even 1990 yet. By 1992, three of my exes were already dead, one was infected and one, though negative, was shell-shocked into a massive depression.

In 1996 two things happened to that changed my life: the first was the introduction of Protease Inhibitors and the resulting "Lazarus Effect", and the second was that I suddenly fell quite ill. As otherwise healthy 36-year olds don't normally get what I had, my doctor at the time suggested that I get tested. Both my then-partner and I came back positive, and I was mortified: crushed in a way that I've never really gotten over, though eventually I learned to move on.

Due to his inherently dishonest nature, I'll never know precisely whether I'd infected my partner or whether he'd already been infected when we met. But he would alternate between reassuring me that I was blameless with accusations that I'd been reckless with his health (an earlier broken condom certainly muddied the waters). That relationship, toxic as it was, endured for eight more years.

We found that not all support groups were the same. When we were diagnosed, we lived in Boston, which is a large and very cosmopolitan city, and took part in an excellent group for several years. When we moved to suburban Connecticut we found that the group was a haven for addicts and the mentally ill and dropped out pretty quickly. But by then, we'd talked the whole HIV thing to death anyway, and found private, individual therapy much more productive.

In the aftermath of that break-up, I eventually found an online support site called AIDSmeds.com; it had been founded by one of the original organizers of ACT-UP New York. I lurked for a bit, read lots of great information (still the single best resource for HIV/AIDS info on the web, IMO) and eventually joined. Like every other community, it has its strengths and weaknesses but there is no place on Earth where such a diverse group of people living with HIV/AIDS can congregate. There are men, women, neophytes, dinosaurs (like me), black, white, asian, people from every continent except Antarctica. The politics of the place means that I rarely contribute there anymore, but I do still post a few times each month.

Starting treatment in 1996 as I did means that I was subjected to just about all of the more lurid and gruesome side-effects imaginable, and all of it has taken its toll. One thing I've read here (and see everywhere, even at the HIV-related conferences I attend now and then) is that it's a "manageable" condition, and for many it is. But I am not now nor have I ever been an AIDS minimizer. People still die everyday from AIDS-related conditions in fully modern Western hospitals (or, if they're lucky, in hospice), under careful observation and all the latest treatments.

As we age, we dinosaurs are teaching the medical establishment about what it takes to truly thrive as a long term survivor, both physically and mentally. Our bodies are aging more rapidly than normally, and depression takes a dreadful toll; there's evidence of cognitive impairment and other signs of neurological issues that had never been noticed because most everyone before us died before they could be observed.

I'm not writing this because I want to frighten or depress you; I really just want you to know that there's another side to the story. But everyone's different, the virus mutates differently in everybody, and everyone responds differently to specific meds. Generalizations about living with the virus are dangerous things, because everyone needs to be every alert to his/her own body and how it responds (or doesn't) to different therapies.

Remember: you are the CEO of your own health care, not your doctor(s): he/they work for you, and you have the final say in treatment options. If I had adopted that strategy from the beginning, my overall well-being would be quite different now, I assure you.

As to disclosure: that's an extremely personal matter. At the beginning of my diagnosis, I only disclosed to those from whom I required understanding and support. For me, that included my sister, my landlord and the small staff in the store I worked in (including my boss). It took years before I was comfortable or proficient at it. These days I disclose to everyone, as there are no negative consequences in my life for doing so. But it remains an intensely personal decision.



<Spits>

It needn't frighten anyone, but there's always an enduring stigma among the uneducated and afraid.

I made up my mind about six years ago to restrict my dating/sexual options to those who are already poz. It's a practice called serosorting, and I'm firmly in support of it. At least here where I live in South Florida, there's an embarrassment of riches in that regard; the poz/gay community here is huge. I understand that not everyone's quite so lucky, but I also know that I'm hardly living in some isolated Nirvana of erotic potential. When you're ready to dive back into the pool, do so in as rich and as inviting a pool as you can find.

PM me anytime.

Bbucko,
I'm so glad you posted. We are the same age, (I'm actually a couple years older I'm 55) and, I remember when HIV/AIDS started. People with horrible fears about the gay community.

And, a big yeah, and, woo-hoo for the people of "ACT UP."

*************But I am not now nor have I ever been an AIDS minimizer. People still die everyday from AIDS-related conditions in fully modern Western hospitals (or, if they're lucky, in hospice), under careful observation and all the latest treatments.

As we age, we dinosaurs are teaching the medical establishment about what it takes to truly thrive as a long term survivor, both physically and mentally. Our bodies are aging more rapidly than normally, and depression takes a dreadful toll; there's evidence of cognitive impairment and other signs of neurological issues that had never been noticed because most everyone before us died before they could be observed.*******************

I am not an AIDS minimizer either. Since I remember the history. I remember people dying. Their bodies wasting away. Their family, co-workers, etc. running away. It saddens me to think that the brave work that was done is taken so lightly. I want to run after people with condoms, and, dental dams---stopping them, and begging them to use. I think that with the prevalence of thought that it's a "manageable condition" is not good. It's downplaying something that is preventable, and, people still die from AIDS related complications.

Ok, label me Dinosauria/Dinasaur.

 

[Infernal]

I'm negative, but my partner is positive. He found out in 2009 after we had been together for about a year. I believe he had it when we met and didn't know. He described a health crisis he had gone through 2 years before, and i believe that was the initial crash of his immune system. We didn't always use condoms, but we do now. He takes his medication daily, has a great mental attitude and puts 110% effort into everything he does.

I get a full HIV and STD panel every 3 months. For my own peace of mind. I've lost a lot of friends over the years and this is very close to home, so I do whatever I can to keep myself as healthy as possible. We have an open relationship, and while I rarely play on the side, he is a frequent flyer sometimes. I insist on condoms all the time, but won't delude myself that they won't always be used. I will always use them, but I have to trust that he will to. Between us, it is condoms all the time, and due to the amount of precum he makes, I won't suck his dick.

I'm 42, he's 51, and I swear he will outlive me. I get colds, he doesn't. I have allergies, he doesn't. I have a really delicate stomach, and he eats things that I wouldn't feed to a dog. I have low testosterone, and he has the sex drive of a 16 year old.

I'm not trying to paint a rosy picture. It is different for everyone. Some of my friends went peacefully and with dignity, and some suffered horribly. I think modern medicine has made amazing leaps in treatments over the last 20 years and we will beat this thing someday.

 

[travis7]

hey ya alan, so its been a while, and was wondering how its going ? coping and all ? there is a new study out.. ( to be a test suject )

 

[tominatlanta]

I suppose I have lived longer w/HIV than anyone else in this group. I was diagnosed here in Atlanta in 1989. I prob was infected on a trip to NYC Labor Day weekend 1984. I started getting sick with the flu every January in 1986, 1987, and 1988 in Philly. My CD4 count was 538 in November 1989. In the last year, it has ranged between 427 and 550 or so. Retrovir (AZT) is one drug to try to avoid for making you feel tired and depressed. I currently take KALETRA/ZIAGEN/EPIVIR. I have been "undetectable" since Fall 2001. 2000-2001 was my last "relapse".

My advice to everyone? Try to minimize saturated fats and sugar. Apparently they can bring on old-age dementia early, and with HIV-dementia sneaking up on you as the years go by, you don't want dementia. Also, eating fresh fruits every day is NOT as good as eating green vegetables. I also take Omega 3 gels - 2,500 mg per day.

Your #1 priority should always be a good night's sleep 7 days a week. Have trouble with diarrhea? Take Immodium once every 48 hours. Have trouble with jock itch in the summer? Use Zeabsorf-AF powder on your inner thighs to prevent it.

I think this covers the highlights.:frown1:

Tom

 

[Infernal]

Some years ago I started an HIV + support website for a friend to help him deal with his news of becoming positive. One of the guys on there had a fantastic attitude about it. He was fond of saying that he didn't have HIV, it had him, and that it didn't matter if he lived another day, or another hundred years, he was going to kick its ass every single day he had left.

The website crashed and burned due to a botched software update and due to some of the drama going on, I decided not to fix it. His words have stuck with me since then.

 

[travis7]

HIV. Non detectable is not much a problem. You pop a pill every night. Life goes on.
What is worse is the way others treat you.

 

[travis7]

Chatting on line is cool and safe.
I did a test .. Changed my pic and put HIV poz. No one really chatted with me.
A month later, I changed my pic and took out the HIV poz part and I was getting hit on a lot.
Before I meet any one in person I tell them my stats.
HIV I can live with, How I'm treated by others is a lot worse. I now live in a bubble world. I don't go out .

 

[pumplover]

I know this thread is a bit old but I'm starting a group for poz guys that enjoy bareback sex

 

[uncut1]

I was diagnosed in 89,and I'm 53 now,When my best friend..friends passed in chicago back then its was so unreal. I new that the sooner i got tested the better,but i was scared to death off hearing those words.Here I am all these years later undetectable

 

[deano-uk]

Sorry to hear your news - a complete shock even if you may have perhaps suspected or not.

They will have to find out at what stage you are at in the run, typically i understand that if the person you caught it from was on their third type of drugs - you may also be at the same stage as them - but medicine is a lot lot bettter than the early drugs - and they are developing more technologies .

My partner has been positive for 28 years - on meds - had a few bad patches but going strong - from really low CD4 and really high viral load - has got back to a reasonable CD4 and un detectable virus load ...

I am negative when i first met my partner he hadn't told me and was worried about telling me, but it very much depends on the person and their understanding or ability to find out about HIV - I just said to him "and your point is - I like I am not going to run away because of what you told me"

But saying that reactions are different - tell who you want - and remind people you tell that it is your information to disclose not theirs so please keep it to themselves.

But there are many confidential HIV support groups - worth joining - but your specialist at your GUM clinic should have details

Good luck and be safe and stay healthy

Hi Niceone,

I like in the UK so luckily my treatment wont cost me anything, although I am fortunate enough to have health insurance anyway through my work.

I understand you have to tell your GP and dentist, but who else has everyone told? I have two close friends (one went with me, the other being his wife) who i told but im scared of the stigma attached to it and how people would react if I did tell them because so many people are completely uneducated about it over here. Not that I want to go tell everyone but there are some people that I guess I would feel like I am keeping something from them. I dunno. I think its time for a nap.