Good News

Got up this morning a little earlier than I needed to, so went to the station with my boyfriend, then sauntered over to go and get acupuncture, telling them about the problems with my shins the last time I went in - they didn't really have a decisive answer for why I had a day of agony after the last treatment, nor really much of an apology, but I wasn't in a rush this morning, so I think that helped a lot with how the treatment today went.

Lay back, relaxed, feeling the warm glow of the needles radiating through my muscles, listening with my eyes closed while a woman talked about her CD4 count. My mind has been focused on the appointment my boyfriend and I have tonight to talk to a health advisor about how to ensure we remain a serodiscordant couple - assuming, of course, he tests soon and has the status he expects. Because I've been thinking about that, I'd kind of stopped thinking about my blood tests, having passed the window where they'd have called me to alert me to some kind of awkward result.

I got out of acupuncture, checked the time on my phone and thought, "What the hell," and phoned the results line, even though I was a couple of minutes after they were meant to close. Still, a familiar voice answered, a doctor I've seen once a while ago, so I was able to get my result.

Seven Hundred and Forty-Three.

Windswept, huddled against a brick wall like a smoker, I asked her to repeat it, my smile very probably audible over the line. Needless to say, this is good news, and is something I'd like to see maintained. I will still go in to talk to my doctor on Thursday to check about when I next need a test (presumably 4 months) and just to check if this might be a blip like the 85 result in December. I think, however, it won't be, because the percentage is correct, so it's not likely to be a machine fault. There's a normal level of fluctuation in CD4 results, but apparently that's more like 100-200 points shift.

So, why is my immune system in a better shape than since diagnosis? Well, as I say, I want to wait for this to be confirmed as a result, but since I'm in very good health, I would have imagined that to be accurate. I think a lot of it must be to do with lifestyle changes. In December, I was stressed out from moving flat, from breaking up with my ex, I've stopped going out on all-night clubbing benders, I've started getting acupuncture and, most significantly, I've stopped taking drugs.

I'm not going to extrapolate from one good result into a moral crusade. I'm just pleased that it's now meant I can forget about even contemplating medication for the time being. Hopefully, with a little luck, I can keep this level for a while. It makes sense, though, I'm no iller than any other person I know. I'm just going to relax and hope tonight goes well and that there's nothing to be afraid of in terms of passing this on to someone I'm incredibly fond of.

Another Potential Cure

Seems like every couple of months at the moment, there's some potential cure or another advertised. Since I've been diagnosed, I think some of the best examples are crocodile blood and epilepsy pills, but there's another one in the offing that sounds like it's currently getting a whole load of spin from its company, being advertised as a cure for HIV while still very far from actually being able to do that, other than hypothetically. While, obviously, I'm in favour of enormous amounts of research being done into finding a cure, I'm not wildly keen on the amount of flag waving and ticker tape parades going on for early stage research and results that are only hypothetical. This drug, like the sodium valproate option sounds like it breaks down the virus in the system but not in the brain, so I'm not sure if that means it would replace antiretroviral dependency with another "drugs or death" option.

If there was a single pill that would completely cure HIV, I'm not sure it would make economic sense for drugs companies to release it, when a lifetime dependency to HAART drugs earns them over £15k per patient per annum. What does make sense for them is to allow incremental advances to be released, but not major leaps forward. They have to keep ahead of the opposition, but not too far ahead, or then the whole industry collapses. The HIV drugs industry is worth an awful lot of money and they depend on people being seropositive just as much as we depend on them for the drugs. It's a symbiotic economy. HIV disappears, all those wealthy doctors and researchers (and their investors) suddenly have to find other avenues for gaining obscene individual wealth while Africans die in their hundreds of thousands.

And would we, the HIV+ people of the world, take that pill? There's a culture built up around HIV now because of the abject fear instilled in mainstream society around the virus, so we're subtly nudged into a ghetto subculture of gays, junkies and hookers and suddenly we've got our own argot of serodiscordance and protease inhibitors, our own artists, poets and writers, we've got our own magazines, our own ad campaigns, our charities, our doctors - a whole fucking world of seropositivity. What the hell happens to that when a cure comes out?

Essentially, would the men and women who've been positive since Diff'rent Strokes was still new and fresh and funny actually want to take that pill? Culturally, we're encouraged to define our identity around the virus - sorry, the disability - we have, are we really going to be able to abandon all of that? Look at the resistance to cochlear implants among the Deaf community - would the pozzee possee really want to give up everything we've clawed together around us in order to cushion the fact that we've been living with cheeks like autobots, running around in the shadow of death for a very long time.

In Sweden, a woman who was an active member of the HIV+ campaigning community seemed to have miraculously recovered from the virus. It transpired that she'd been misdiagnosed, then threw herself into health campaigning, into pushing for improved rights for HIV+ people in a country with quite draconian legislation around disclosure and transmission. Within a few months, she tested positive again, and without misdiagnosis being to blame. The doctors said she was reckless and stupid for exposing herself to risk of infection, but the more astute commentators observed that it was probably inevitable that the darling of the campaigning movement, telling everyone how to live healthily with HIV had become, psychologically, so HIV+ that to take away her seropositivity would be like taking away her gender, her language or her ethnicity.

In our current cultural melieu, being diagnosed positive forces a massive change in psychological identification on those infected by the virus - I don't know how readily those who have lived with HIV for ten, twenty years would be prepared to go through another massive paradigmatic shift in self-definition. How many people who have gone through the struggle of coming out as lesbian, gay or bisexual would take a pill which would, "make them straight"? There'd always be that lingering sense of not being who you were meant to be, of masking your true identity.

I've had this virus for about a year, if my maths are right, been diagnosed for six months and it's changed my life. Saved my life, my mother says. Since diagnosis, I've lost 10kg, gone to the gym very regularly, improved my fitness immensely, moved to living by myself, sadly ended a long-term relationship, stopped taking drugs, taken a more responsible view towards my finances, started writing professionally, regained my artistic side and, yes, did I mention, stopping taking drugs?

Sure, many people go the other way and see HIV as a path towards the Dark Side, hurling themselves into a vortex of drug abuse and masked depression, but there are plenty of people for whom it's been an immensely powerful wake-up call. How many of us would give up that thing to struggle against? The reminder of the frailty of life that, like a Dutch Vanitas painting, speaks of the need to consider our true priorities.

Tags:
HIV,Living with HIV,HIV cure,

Talking with your mouth full

Went in to have blood taken again yesterday, will get results on the 30th. As always, I stressed out about it beforehand, but the appointment itself was quite enjoyable. Was nice to chat to the nurse who's taken my blood a few times in the past and making jokes like,

"Hello, it's been a while since we've seen you here!"
"No offence, but surely that's a good thing!"

Going every week over Christmas really wasn't a good look, so I'm very glad to be done with that. Hopefully, I won't get that trigger-level phone call telling me to come in urgently next week because I've dipped below 200, but I doubt that's likely.

While I was there, though, I did book in an appointment with a health advisor so my boyfriend and I can sit down with someone and get advice on how to make sure we remain a serodiscordant couple. I know they'll not tell either of us anything we couldn't work out for ourselves, but sometimes it's good to dedicate a little time to talking it through with a third party.

Temptation is to do a list and ask for an "Ok" or "Not ok" answer, like a ticklist.

"Can I cum in his ear?"
"Can I wank off with his blood all over my cock?"
"Can I cut him with a knife and fuck the hole?"

and so on. However, I've got a feeling it'd be like asking how much stuff costs in poundland, which is, of course, the funniest thing ever, but might spoil the gravitas of the situation. I'm a plague dog and should ever be reminded of that.

Tags:
HIV,
Serodiscordance,

His Blood On My Hands

Well, it looks like it's on. I am lucky enough to have a new boyfriend. He's agreed it's okay that I mention him and his status on here and, yes, as discussed before, he's not infected. It's weird to have that sense of the danger my blood and fluids present to him even though we both feel that urge to be totally close to one another. It's slightly odd that the issue isn't that I am HIV+ at all, that is so easily managed, but the issue is that he is not positive, and we both, obviously, want it to stay that way.

It's funny playing games around the idea, and leads to some very creative things, like playing with fake blood for photos bound to wind people up and we're finding some very fun ways to enjoy sex with that same sense of physical closeness without actual fluid tranfer through penetrative sex. We both know there are gambles we're taking here, and it really moves me enormously that he admits that itfrightens him (it frightens me, too) but that he's prepared to take that risk.

Of course, we minimise the risk, safe sex, not doing body fluid transfer, but still, every time I have la petite morte, there's a danger, however minimal, for those few moments before the virus dies outside of my body.

I have always minimised risk to negative partners since knowing my status and, apart from two possible moments where I took a moderate risk by fucking someone and not using a condom, I've not done the fluid sharing thing for many years now. Nevertheless, it's not felt so important to avoid fucking up as it feels now I so vehemently want to avoid infecting him. The sex is amazing, and I'm sure it's much helped by the months it's been since I've used recreational drugs other than nicotine and alcohol that I can feel so intensely with him, but I want to be so damned careful with him.

Logically, I know what risky behaviour consists of, but then I knew that before I caught it, so I'm clearly either not as well-informed as I thought or as disciplined about avoiding risk, which frightens me. I'll try to get an appointment with a health advisor when I go in to get my blood taken next week, perhaps, although they'll tell me nothing that the internet won't tell me, so perhaps I'll call THT and ask about information stuff to do with relationships with differential HIV statuses, but ultimately, I doubt a little booklet is going to be the prime mover for change.

Advice from anyone in a similar situation, on either side of the coin (heads or tails, got it or ain't) would be welcome, as I am finding this quite a strange experience and I don't want it to taint the situation.

Tags:
serodiscordance