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Author Topic: One week and counting...  (Read 5202 times)

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Offline keyite

  • Member
  • Posts: 514
One week and counting...
« on: September 13, 2006, 10:10:10 AM »
Hello everyone - just joined: 40 y/o gay guy from London, UK. I was diagnosed positive one week ago and it definitely ranks as the worst and most turbulent week of my life. Went for a routine check-up at my local STI clinic and since I haven't had any high-risk behaviour, and because getting check-ups has become, well, routine, I didn't think too much about it beforehand. But the moment I was called in by someone who clearly was a counsellour, rather than the doctor or nurse who had treated me, I just instinctive knew what was up.

He gave me the result and I just felt so numb, so stunned, could not take in what he was saying, could not even look him in the eye. He explained they would need to test again to confirm the result but I knew it was right: back in May I went through what I first thought was flu but then starting to suspect might be seroconversion. It just didn't seem like flu - spiking fevers, headache, itchy scalp (of all things!) but no sore throat, no running nose, no aching joints. While still ill back in May I went to a private clinic and had the p24 antigen test and it came back inconclusive (performed three times, 2 times vaguely positive, one time negative). This was obviously cause for concern and a Western Blot was then performed and it was negative. The doctor told me it most likely was a blip and not to worry. I then recovered and gradually forgot all about it. Until last week, of course. Now I know I was seroconverting back in May but that antibodies still hadn't been developed at that stage.

When I left the clinic I called my best friend and, as he luckily was around, I went straight to his place. He was just great; a shoulder to cry on, provided a listening ear and a bit of reassurance. I can't imagine what it would have been like to just go home alone after this news.

The first few days was just the deepest despair I have ever felt. I cried buckets, could barely sleep, could barely think beyond the hour. I toyed a bit with the idea of throwing myself under a bus (not all that hard as a cyclist in London traffic...) - I know I wouldn't have done it but it did seem a tempting way to end the pain. I went back to see the counsellour again a few days after and was told the initial result had been confirmed - strangely, I felt fairly calm when he told me this - somehow I was then no longer in limbo and could perhaps start to deal with the situation properly. Talking to him helped a lot, particularly when he disclosed that he himself had been positive for 10 years and was doing just fine on the meds.

I subsequently told another friend and it has been great to know I have friends who now know, who care about me and who I can trust - it is so good to be able to air my thoughts and worries freely during this period of re-adjusting.

Yesterday I then went back to the counsellour for my first set of lab results: CD4: 583; CD4 percentage: 33; viral load 17,000. I am still trying to take in what all these numbers actually mean but he seemed to think this gives cause for a little optimism. I really hope he is right because I would rather wait for as long as possible before starting the meds. The stories I have read about the various side effects really scare me.

I no longer feel the kind of despair I felt last week, now it is more a sense of immense sadness. Also I feel so angry with myself for letting this happen - I realise it is not a very logical or helpful feeling to have but I don't seem able to let it go, at least not yet.

Beyond the medical aspect I really struggle to see how life from now on is going to work. The impact on meeting other guys, sex, family, work and so on just seems impossible to reconcile. I clearly need to learn from other positive people out there so I can work out what will be the way for me. Am working on finding a support group of some sort.

Going to end here for now - it has actually helped a lot to write all this down.

Offline Moffie65

  • Member
  • Posts: 1,755
  • Living POZ since 1983
Re: One week and counting...
« Reply #1 on: September 13, 2006, 01:49:25 PM »
Keep writing my friend, keep writing.

Please do me a favor, let your emotions run the gammut, for only then can you actually work through all the stages of grief that you need to experience to let your previously, carefree life go, and start down this pathway to "re-construction".

Hell, only the blueprints have changed, not you.  You can create anything you want out of this new life, and I am proof of that.  You can start and screw up a business now just as well as you could pre-HIV.  Only now, the lessons you learn, and the mistakes you make will never be repeated.  Only quality and truth will now suffice.  Hey, look on the bright side, you never have to worry about getting an HIV infection ever again now.  Trite isn't it?  Well, not really, there are so many things that you can do now, as before, only now, you might not put that trip to the ocean, or Amsterdam, or New York, or the country in the north of England; off nearly so easily.  Now our lives are measured, and we must grab at all the opportunities when they arrive.

You will do fine, but please don't make any decisions too soon, as the more you learn and the more you know about HIV, the longer you will be able to fight off the dibilitating effects of this disease.

Stay well, and please stay out from under those busses, it isn't nice what they do to us humans.

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

Offline Eldon

  • Member
  • Posts: 2,664
Re: One week and counting...
« Reply #2 on: September 13, 2006, 07:17:00 PM »
Hello Keyite, it is Eldon.

Moffie has illustrated your newly diagnosed situation beautifully and I complement him for that. Let me share something with you, he is right it is a new beginning in your life. It was also a good gesture on your friend's part to have you come over when you heard the news from the counselor. When you see him again, give him a big hug and tell him thankyou. 

I wish to extend to you a warm WELCOME to the forums. Here you will find understanding, communication, support, some cries, some laughter, and you will have many of your questions answered relating to HIV/AIDS.

We have a great group of individuals here and there is a lot of information on this site at your disposal. Feel free to come and vent from time to time with whatever is on your mind. We'll be listening and answering.

In the interim, work out an exercise schedule that will fit your needs, drink plenty of fluids, change your current diet, and most importantly, get your proper rest as well.

Again Welcome! and Have the BEST Day!

Offline ndrew

  • Member
  • Posts: 695
  • ....-.-.-.-.-.....
Re: One week and counting...
« Reply #3 on: September 13, 2006, 08:34:35 PM »
Hello Friend and Welcome,

All of the emotions you are feeling are normal, let them flow through you, but don't let them consume you.  I have been positive for 2 1/2 years and I have confronted many demons.  I am not going to say it is easy, most of the effects are psychological.  I have no idea what tomorrow holds, but I am the happiest I have been in my life in many ways.  I live a normal life, aside from the complexity of dating, but that has always been complex.  I love my job and work out regularly.

Even so, when things get tough, I think, is it really worth it?  And I talk back to myself and myself sez... I love life too much...  LOVE IT!!

I am 38 and I still feel like my life is just beginning.  Being positive has made me serious about what I want from life and the effort I have put in is finally, slowly paying back.  I am more sensitive and caring and I take in the big picture.  I like to think I think beyond myself as well.  The truth is we can do a lot and we have each other for support.

We make choices.  Other people's choices effect us.  Things just happen, but in the end WE decide what we will do about all of this.  I sincerely hope you choose a path of hope, goodwill and love for yourself, you deserve it! 

Your assignment is to LIVE!  NOW GET TO WORK!!  (Sorry I just taught a huge freshman lecture class, I am a professor.)

With Love and Support,
Andrew

Offline lydgate

  • Member
  • Posts: 1,022
  • Virgin, can't drive
Re: One week and counting...
« Reply #4 on: September 13, 2006, 09:07:40 PM »
Hey Keyite,

I'll only add a couple of things: Your numbers are really good. And that, if/when you fall into a despairing mood again, just remember that this is 2006 and not 1996, and that 2016 is only... ten years away. No reason to think that you won't live a loooong happy productive life. I was diagnosed a year ago; and I'm pretty much back to "normal." Even my sex life.  :) I'm not minimizing the gravity of The News; it ain't good news, and despair is a "natural" enough response. But after the initial trauma subsides, after the smoke clears a bit, you will find that...

...it gets better. I promise.

Jay
Her finely-touched spirit had still its fine issues, though they were not widely visible. Her full nature, like that river of which Cyrus broke the strength, spent itself in channels which had no great name on the earth. But the effect of her being on those around her was incalculably diffusive: for the growing good of the world is partly dependent on unhistoric acts; and that things are not so ill with you and me as they might have been, is half owing to the number who lived faithfully a hidden life, and rest in unvisited tombs.

George Eliot, Middlemarch, final paragraph

Offline DanielMark

  • Member
  • Posts: 1,475
Re: One week and counting...
« Reply #5 on: September 14, 2006, 04:38:20 AM »
Hi Keyite,

You've been thrown for a nasty loop, but in time you will regain your balance. What you’re experiencing emotionally now is completely normal.

I tested positive 18 years ago this month and hey, I'm still here.

With proper medical care and proper self care you will be around a good long time.

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline Andy Velez

  • Global Moderator
  • Member
  • Posts: 25,363
Re: One week and counting...
« Reply #6 on: September 14, 2006, 08:42:18 AM »
Hey Key,

Welcome. We're glad you have found your way to this site.

Your description of the past week was eloquent. It's good for you to get that out and not have it just brumbling around inside your head. And you seem to have a good honest way of looking at this turn in your life. Right now HIV understandably looms huge in your mind and in your feelings. Gradually you are going to see that it will settle into being a part of your life and by no means all that your life is about. And you're going to see that your life is still going to be good.

You don't have to rush to do anything right off. It is important that you have a doctor with whom you can  form a good working partnership to keep you healthy. And who will be regularly monitoring your numbers. As you will see from reading these pages and the lessons on this site, you have time to make a decision about the meds. There are different points of view about that and you can consider with your doctor what seems the best decision for you.

It's good to read that you have two supportive friends whom you feel you can trust. Isolation is bad for the one's spirit and one's health. Do read the lesson on disclosure as there are some ideas there you may find to be helpful.

You're always welcome here to ask questions as well as to discuss anything that's on your mind.

You've come to the right place. Keep us posted on how things are going.

Cheers,
Andy Velez

Offline keyite

  • Member
  • Posts: 514
Re: One week and counting...
« Reply #7 on: September 14, 2006, 12:47:51 PM »
Thanks everyone - it was really heartening to read your responses. It can be very difficult to 'see the wood for the trees' right now and it helps immensely to get a bit of reassurance from those who have trodden this path before me.

One of the two friends I mentioned in my last post put me in touch with another one of his friends - someone who was diagnosed a few years back. This guy agreed to meet up with me and I went to see him at his place last night. Turned out he was a doctor too so obviously able to speak with authority on that score. It was good to talk about the medical aspect and he showed me his meds - just two pills taken once a day and no side effects, other than when he started out on them - amazing! But it was equally helpful to find out about his experience of disclosing, to potential partners, to friends, to family. Best of all, it was abundantly clear HIV hasn't diminished his thirst for life one little bit. Him sacrificing his evening like that for someone who was virtually a stranger was an incredibly kind thing to do. Even though I cycled back home in pouring rain and thunderstorms it was definitely with a lighter heart!

I am slowly coming to accept that there is a high probability I won't die of AIDS - or at least it is not likely to happen much earlier than when I would have had to depart from this world anyway. I am also coming round to the idea that the meds won't be the end to my quality of life - they hopefully won't be necessary for a long time to come, but when the time does come, I don't get the impression the side effects on newer drugs are likely to be as bad as they clearly have been for some on the older types of drugs.

I still struggle to see how everyday living with HIV is going to work but having now met a few positive guys and being determined to meet more, I feel more confident I will be able to piece things together again - albeit in a slightly different way. Eventually I will need to face the most essential aspects of disclosure; I have always been very close to my sister and will have to tell her sometime soon - but I know it's going to break her heart (and in turn mine) - it is going to be with a very heavy heart that I lift that phone and call her. Not to mention my parents - still wondering if it wouldn't be kinder to not tell them at all, even though I will hate withholding it from them.

My biggest hope is that I can find a way to afford this virus the respect it obviously needs, particularly in terms of taking care of myself, but not otherwise let it intrude on my life any more than is strictly necessary - I know it is going to be a while before I reach that point but it would definitely be my aspiration.

It has only been a little over a week but I do feel I might slowly be finding my feet. If nothing else, this certainly teaches you a lot; you realise what stuff you're made of, what resources you actually have but just take for granted and - as ndrew pointed out - the importance of living life while you can.

Moffie65 - really enjoyed reading your blog, particularly the account of the early 80s - I have seen 'And the band played on' but the more personal angle you provided was fascinating.

To the person who PM'ed me: I don't (yet?) seem to be allowed to send personal messages so I cannot reply to you personally - but in answer to your question - I have not had unprotected anal sex so the likely route of transmission for me is oral sex - I am told it does happen, albeit very rarely, and I just seem to have been really unlucky.

Thanks again!

Offline justsomeguy

  • Member
  • Posts: 9
Re: One week and counting...
« Reply #8 on: September 15, 2006, 02:31:01 AM »
It's been just a month since being diagnosed HIV+.  Have been giving a lot of thought to telling my mom.  She is 70 now and while I hate the idea of keeping this from her, I'm not sure its a good idea to tell her.  She would only worry endlessly and now is the time she should be focused on having fun and doing what she wants to do.  I most likely will be healthy for 10-15, maybe 20 years and by that time it probably won't matter.
I understand keeping part of yourself hidden is usually not such a great idea - for you or people you have a meaningful relationship with.  And while I do have a close relationship with my mom, to be honest, it's not so close that I would confide in her about my sex life or be as relaxed as I am with friends, so would revealing my HIV status be something I would normally do?

Anyway, not to sway you one way or the other.  I just wanted to relate my own struggle as it might be helpful or similar.  Good luck to you whatever you decide.
Diagnosed 8/4/06
cd4 400
VL 11,000
ratio .9

Offline keyite

  • Member
  • Posts: 514
Re: One week and counting...
« Reply #9 on: September 15, 2006, 12:31:43 PM »
Hi justsomeguy - I know just what you mean - it really is not a straightforward decision to make.

On the one hand I - like you - feel it is unfair to burden my parents with something that is unlikely to seriously affect my health while they're still alive. Both now pensioners - 65 and 70 - I think it would be a struggle to bring them up to speed on the various improvements in treatment and life expectancy. I suspect they would still see it as a death sentence, would endlessly worry and would feel some of the profound loss any parent outliving their child feels.

But on the other hand I can't help being reminded of my own reaction a few years ago: my dad is an asthmatic and experienced a particularly bad turn. He was hospitalised and for a while it was touch and go as to whether or not he would make it. I only found out weeks later - the family decided there was no point worrying me as it probably all happened very quickly, would have required me to book time off work, buy plane ticket, etc.

I have no doubt they made this decision with the best of intentions but I was actually very upset when I found out - upset at having been kept out of the loop and having the decision of whether or not to travel out made for me. So I feel quite the hypocrite for now considering doing something similar to them.

I have, however, made my mind up about one thing. Once I have told my sister about this news (and she has had some time to let it sink in) then I plan to make the decision on whether or not to tell my parents together with her. Between the two of us I feel confident we will make the right decision.

I wish you luck too - it is not a black/white issue!

 


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