Julie seems to be sleeping at night (a good sign), but she says that when she goes to sleep, she has dreams about having long tedious conversations with people, conversations about unpleasant topics, stressful conversations. Basically ARVs are making her go to sleep and experience organized lesbianism.

This morning she was really cranky and humorless, a side effect, I gather, of not having a very restful sleep experience for a few days. I took the opportunity to get lost for six hours and she took a nap. When I returned, everyone was in a slightly better mood.  It’s hard to tell what is really being caused by the drugs, which is why I’m keeping this blog, in order to track behavior over time.

Julie slept until 1pm today, and then apparently felt “drunk” for a couple hours after she got up. The rest of the day was uneventful.

I was informed today by a friend who works in the field that he consulted a HIV MD (who is poz himself) and was assured that the psychological effects of Atripla are actually rare–”like 1 in 100,000.” I questioned this–the personal narratives describe a lot of psychological symptoms. He thinks the MD was referring to those “psychological breaks” –major brain meltdown events. I’m glad to hear those are rare, but the reality is that it doesn’t take a huge mental event to occur to affect a person, and a relationship, in a major way. Change itself–even positive or lateral– is difficult in any relationship. Obviously if Julie starts talking to unicorns in the kitchen, that’s a problem, but even if she has just minor psychological effects, I wonder if I’ll be able to handle it the right way.

Tonight we hosted a birthday party/performance night for a friend and at intermission, Julie cornered me and said, “It looks like I started those [meds] just in time.” She woke up with thrush in her mouth. She described this experience in vivid, gorey detail. It sounded revolting.

Everything I know about thrush, I learned from the ACT/UP Oral History transcript archive. That is to say, I don’t know much, but I know it’s a common symptom, I know it’s in the mouth. I know that someone will thrush might act like they don’t want to kiss you but really they do but (I guess) they don’t feel like it. Or they feel gross. I’m not sure. Anyway, as far as I know, it’s not a huge deal, but it’s a big marker for me. A real symptom. If you want to know more about thrush,  check out wikipedia or something, because that’s everything I have.

All the while she’s telling me about this gross cakey stuff and skin she pulled out of her mouth this morning, I was thinking three things, in this order: #1 This is not sexy, this is disgusting; #2 Can I get this? Should she be putting her mouth on my bits?; #3 Why am I such an asshole that I have to make this about me all the time?

The truth is that I have like a googol CD4 cells. Whatever Julie “has” she can’t give me.  She’s experiencing these symptoms because her immune system isn’t controlling it, but mine would. That’s what I know in my brain. But then, in my throat, all I can think about is not puking as she talks about this thrush stuff.  I’m trying to be reasonable and logical, but it’s scary. Julie’s body is changing, all of a sudden, it’s changing every day, and I don’t understand why and I don’t know what to expect or what is normal or “safe” or anything.

Why isn’t there a book like “What To Expect When You’re Expecting” for people in my position? I’m sure there is, but it would probably drive me nuts. I don’t want to read any literature for HIV- about having sex with HIV+ positive people because usually the assumption is #1 No HIV- person would want to knowingly have sex with a HIV+ person and #2 If they did, it would be using lots of latex. But not only does that NOT address the sex I have, but it also doesn’t address anything HIV affects besides jizz. Of course, I can google all my questions, thank god for google. But what a science experiment my relationship is turning into!

I went through this, in a way, with transitioning. There’s a certain official medical protocol (or many protocols, really) for transitioning. Then there’s the practical knowledge that you learn from your friends. What to say to get the doctors to give you a prescription for hormones, how long before your voice drops, which surgeons require a letter from a therapist and which don’t, where to go if you have small boobs, where to go if you have large boobs, where do go if you want straight scars vs curved scars. None of this is in a book or a pamphlet, but I know all the answers because I’m talked to hundreds of trans men over the last 7 years. If I published a book, it would be out of date before the ink dried.

Who do I go to to get the “street” talk on HIV stuff? None of my friends are HIV+. In fact, the only HIV+ person most of my friends know is Julie. There aren’t any groups for partners of HIV+ people, and most of the websites are about addressing what happens when the person you are dating “reveals” their status–content addressed to people in panic mode.

Julie is fast asleep in bed right now–this is a good sign. The first 24 hours are over. She doesn’t seem to have the “insomnia” side effects. She might be having the “vivid dream” side effects right now, who knows. In the time between taking the pill and falling asleep she seems giggly and sweet, almost clingy. Just before she climbed into bed she said,

“I know this sounds cheesy, but I think you’re the only one who really understands me.”

Well, I’m doing my best, anyway.

At first, AIDS was history. Then, about 10 months ago, HIV became a part of my daily life. I started dating Julie, who was, at that time, fairly recently diagnosed. Back then, her T cells were booming, and HIV was still more of a topic of discussion than a cause for concern. Julie’s status didn’t change the way we had sex. She didn’t feel sick. We were as normal as any two trannies living in Brooklyn could be, and I figured we had the HIV stuff under control.

That isn’t to say that I didn’t deal with negative effects, but they were mostly social. For instance, the only arguments Julie and I have ever gotten in have been because I get frustrated when I think she doesn’t take care of herself.  One of our first dates involved me dragging her to the food stamps office and then sitting outside on the sidewalk for several hours while she worked her way through the red tape upstairs. (I occupied myself reading Catch-22.) After a couple months, my sister met Julie, loved her, but ever since seeing our video about connecting with other HIV+/- couples, refuses to speak to me. (Other family members insist that AIDS panic isn’t the cause for this, but I am pretty sure it is.)

I feel stupid even bringing up the “negative” effects because they seem pretty minor in comparison to actually, say, being sick, and mentioning my family weirdness makes me feel oddly selfish. Luckily thing, then, that all the heady fun times when HIV was just a theory are all the the past.

One afternoon a few weeks ago, I got a chat message from Julie and suddenly her face popped up and the webcam engaged. She looked worried. She sounded nervous, almost guilty, like she was in trouble.

“I guess it’s that time.” she said.

I confess that I had no idea what she could be talking about. It wasn’t her birthday. I was reasonably sure we didn’t have plans that night. A second or two later my heart sank, and I remembered why she had left my house in the first place–a doctor’s appointment. I knew that she had to mean that her doctor had recommended that she start on ARVs–a process we both had been hoping would be put off as long as possible, considering her housing/job/life situation is in near-constant flux and very stressful. She is prone to depressive bouts and without my gregarious habit of inviting swarms of friends over several times per week, might be happy to lock herself up alone for months and put any responsibilities of taking care of herself out of her mind.

“You’re going to start?” I asked.

Her T-cells had dropped just under 400 and her viral load was breaching 75k (we refer to them fondly as “seventy-five thousand of your closest friends per milliliter”).  I wish I could say “for the first time, it was actually real” about this moment, but the truth is that I keep having those moments, as HIV leaves the realm of zines and books and old VHS transfers and becomes this thing that is in my life and changing this person I love.  But in the past, as my understanding of HIV grew I might have felt curious or confused, now I finally felt worried. I was going through this transition with my partner, who had previously been essentially a person with a diagnosis and was becoming a person with a prescription and side effects.

We found out that Julie would be starting on Atripla, an ARV that seems to have a good reputation for beating the snot out of HIV. She has an old version of HIV (one-point-oh, I imagine) and I am under the impression that the ARVs will have a good chance of zeroing her viral load. Atripla’s other reputation is for having extremely common psychological side effects. The package insert is a 55-page 16,000-word document printed on a single elephant-sized sheet in a flea-sized font. The first warning: The medication can cause psychiatric problems, including anxiety, depression, aggressiveness, and suicidal thoughts or behavior. Tell your healthcare provider immediately if you are experiencing any psychiatric Atripla side effects.

The online reviews written by other consumers of Atripla reveal a panoply of first-person narratives of terrifying side effects including vivid dreams coupled with insomnia, dizziness, being unable to see (strangely never described as “blindness”) and even at least one who complained that their “ears swelled almost completely shut.” At first I chuckled at this last symptom and thought, I’d like to see that, but then I considered it and decided, no, I probably wouldn’t.

That was six weeks ago.

Today her T-cells are holding steady above 300; our little friends have increased the party by about 10k per ml.

Tonight, at around 11, Julie took her first Atripla pill. It’s the only pill container I’ve ever seen that has branding on the bottle. I asked her if I could take a picture of her swallowing it but she told me No in a way that encouraged me not to press the issue further. The moment brought back memories of all those times I’ve been with friends who are taking their first shot of testosterone, one of those few medical moments of true joy. Those first shots are recorded on video and polaroids, in livejournal posts and self-important essays. But tonight, I was the only witness, and the moment passed without pomp, without circumstance.

It’s 1am now. I’ve got her framed in my periphery. I don’t want her to know I’m paying too close attention, waiting for something, anything, maybe for her ears to swell shut.

“I feel weird” Julie told me a few minutes ago. I asked her to elaborate. “I just feel weird.” she said.

“Does it feel like anything you’ve ever experienced before?”

“Yeah. Like drugs.”

And so, it begins.