Sunday, February 03, 2008


I’ve been away for so long, due to a combination of factors. Actually what brought me back to the blog is the fact that I volunteered (seems a somewhat dramatic term, but can't think of something more accurate) to host (again seems overly dramatic) the upcoming edition of the International Carnival of Positivities.

I've mentioned the ICP here last time I blogged. It's a collection of writing by different pozzies from all over the world and all ethnicities and background. Actually not only pozzies, anyone else involved, anyone else who cares, basically, can participate in it. It's Ron Hudson's baby, so I will stop sounding as though I know anything much about the doctrine behind it. I'll just say it's a beautiful thing.

What has kept me away was resistance, not just my own version of the virus resisting the meds but the medical establishment (or rather, 2-3 members of this establishment) resisting my health crisis. It took a while to get that sorted. To make a long story short, my nurse practitioner failed to register all my blood results in my file, so my doctor was not fully aware of the exact number of times that I had turned out detectable. Even so he was concerned, but when he raised that in a meeting, the same nurse claimed that I was not adhering to the meds. Not true. So I had a really hard time convincing them to a) see me off-schedule and b) change my meds. It was the same nurse who refused to let me see the doctor. I got over that, but only after involving and evoke one very respectable member ID docs community. And I used what we call Vitamin P in Israel, I would never have believed that I would resort to this, and actually I didn't quite. After getting the second and third opinions that I had to switch ASAP, and still getting that refusal to even discuss things with my doctor (I was unaware that he had received all this misleading info from the nurse), my dad, yes my dad, called the doctor behind my back. I didn't even have his number, I actually was adamant that my dad would interfere because I thought it would surely backfire on me (and make me look like a stupid, weak daddy's girl), but he did it anyway. And it worked. The next day, I had an off-schedule appointment, and when we met and compared information, it became clear that the nurse was the crux of the problem. The bureaucratic problem, that is, not the resistance problem. But you know systems have bugs too.

The doctor changed one of my meds, but he prescribed the wrong dose, 2 pills instead of 4 per day. And I somehow discovered it, thanks to the AIDSmeds lessons. I didn't even specifically look up dosage, but somehow trying to decide which would be the lesser of evils when it comes to PIs, I made a subconscious mental note that Invirase was 2,000 mg a day. I just couldn't believe that my doctor could prescribe a wrong dose. When I told him, he apologized profusely, he said had I taken his dose, given my rising VL, I would've acquired the resistance from hell.

Speaking of resistance from hell, a friend has been diagnosed with a multiple resistance to all existing meds and classes. How did that happen? How did she go from no resistance to resistance to everything (except, hopefully, the integrase-inhibitors coming out now, which haven't yet reached the Netherlands)? No one can know for sure, but it did coincide with her having unprotected sex with her new boyfriend. He gave me a ride home when I came back from Spain this Jan. We were talking about his bisexuality and he said that he has no secrets from my friend. But in the beginning, she assumed that he wasn't on meds because his numbers were good. After a couple months, she realized that his CD4s were a few dozen and his VL immeasurably high, and the only reason he wasn't on treatment was that he had to finish Interferon first.Yeah, I know there is no proof of a super-strain. I know. This is just my friend’s story as I know it. And now we are waiting to see if 15 years of survival with this virus, with a CD4 count of well over a 1,000 and plans to have a baby and a marriage set for this summer will be saved by the patented innovations coming from the West. And yes, she should have known better. But after 15 years with the bug and 5 years in exile, she is love-famished. Aren't we all.

Another thing that kept me away from blogging was just stress, or as it chooses to manifest in my case in RSI (repeated stress injury), which makes it painful to use a keyboard. Always uncomfortable but sometimes unbearably so. That's a real threat to me, my livelihood, and my dreams. I have developed an internet addiction instead, just surfing the net, which is bad but not as bad as typing. OK the mouse is probably the worst thing for RSI, but I lied to myself that just viewing things online I don't use it as often. Yeah right. My belated resolution for 2008 is not to keep replacing addiction with addiction.

Speaking of addiction, haven't smoked in a few months. I wasn't really addicted to cigarettes, not in this cycle, I was horribly addicted back in the day but after quitting for 4 years and even after the chain-smoking period around my diagnosis, I managed to only smoke a couple and only after supper (unless I was socializing or traveling). But I cut it out completely, and the main reason is that, incredibly, we are trying to get pregnant. Which is such a wonderful thing, that I can't say anything about it. And like most wonderful things, it is accompanied by a huge anxiety. I almost don't have anything that one needs to have a child. Not permanent job, and neither does P., who's actually been unemployed (but at least on benefits) since Nov. He is still working, but not getting paid, trying to finish what he came here to do. I have never seen him stressed, but I started to realize that he is, in fact, whether he shows it or not. We had a wonderful holiday together in Spain and Portugal over the holidays. And when we came back, well, just started doing it. I mean, we've had the informative conversation and picked up the "gear" some months before, but I never thought we'd actually start. But we have. It hasn't worked yet. And I don't know if I am relieved or disappointed. Bit of both I guess.

It's a brave new world I am in, but I still wrestle with the old habits and thinking patterns. I still feel a loser a good part of each day, I still hate and fear my body and my image, I still hide my mental and physical scars and scarring. I still want things that seem so far away. I still get insulted when people are being assholes for no reason, and I take it on myself instead of seeing their pain. I have a long way to go. The future is just as uncertain as it ever was and the fears cast larger shadows, things so painful and primal that I don't want to write about them now. Some things are too menacing for a monologue. And maybe that's the main reason I stopped writing here, all due respect to stiff limbs and shattered wrists. it wasn't comforting enough. The monologue went on for so long. Time for a dialogue. Coming soon. Watch this space.

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