Stylin' Friday: High Maintenance

On my reactions to my HIV and other medical treatments, with a nod (or a very deep bow) to Brian's Haiku Saturdays, which you can find here.

Hereafter a litany of treatment and reactions in series of seventeen haikus…oh, and some prose at the end.

First I get the three:
Start the two nukes and then add
The P.I. later

These meds come with rules
P.I. fasting thrice daily
Drink lots of water

Don't stop taking the
Septra that cured PCP
Take three times per week

CD4 count low
So take Zithromax each week
This is preventive

Take two pills fasting
Get cramps and diarrhoea
Oh yeah, you can eat

Now let us address
Skin problems with prescription
Creams and lotions: five

New problem rears head:
Psoriatic arthritis
Two meds twice daily

Have upset stomach?
One more pill, just once a day
(Swallow handfuls now)

Change the HIV
Meds years later than I should
Three pills once per day

Easier? Maybe
But forget about sleeping
Calmly or all night

Add hypertension
Part product of the first meds
Three more pills to take

Add these together
And consider how much work
It is just to live

No more sleeping in
No forgetting any dose
Reminders all day

How to pay for this
Cost: many hundreds per month
(And that is controlled)

Luckily I live
In Canada, in Québec
Public health care works

All doctor visits,
All medications covered
Long live the RAM-Q*

My sixteen hundred
Dollar expense (just for meds)
Costs seventy-five

(* Régie de l'assurance-maladie du Québec and Régime d'assurance médicaments du Québec)

Just to leave off on a non-haiku note, let me add my appreciation of the science. As entities, I think we can all agree that pharmaceutical companies are motivated by profit, but many of the people in them are driven by other motivations, and these people keep working on improving HIV treatment, diminishing side effects, improving quality of life for people like me. Yes, they remain part of a machine designed to make profits, but I am winning from their work, too. And I don't think it is such a bad thing that we in the developed world pay a bit more for our meds if this can contribute to lower cost and better access for people in the developing world.

My litany of treatment might sound like a nightmare, and I certainly never intended to become, as I like to say, this high-maintenance in my life. There is no denying, however, that my HIV is under control, that my immune system is rebuilding itself (however frustratingly slowly), that I have had no serious infections since recovering from my initial bout of PCP (not the horse tranquilizer, but it packs a wallop anyway!) and that I live reasonably well. I do continue to take way more medications than I had ever pictured myself taking on a daily basis — to the point that I avoid taking one more pill for something like a headache, preferring to lie down and let it pass. I do have daily experiences of side effects (sleeping badly, intermittent diarrhoea) and some longer-term side effects that have had a serious impact on my life (more about that in a subsequent posting). I am lucky enough to live in a community with such a long experience of HIV that I can be open about my status and still find enough solidarity to counteract the negative reactions from others.

Overall, I'm lucky to have been diagnosed in the last half of the 1990s in the northern part of North America, and I am conscious of that good fortune each day. But for those who are not HIV positive, might I suggest that remembering and insisting on a condom every time, and valuing yourself enough to do those things, would be a lot easier.

Inflight movies-o-rama!

There's nothing like a long cross-continent flight to help one catch up on the movies. And those lovely newfangled (can we tell I don't travel enough?) seatback screens are very helpful in allowing everyone to select what they want, and even to try to squeeze in more than one selection. I do, however, find the heat they give off to be somewhat alarming: I can just picture sparks flying out and igniting everything around them in the event of an emergency. Then again, as my sister pointed out on our trip to B.C., if there is any kind of emergency, all this stuff about flotation devices and all would only distract us momentarily from our inevitable fate of returning to the earth in tiny pieces. (Life in a plane crash is not like Lost.)

Back to the matter at hand. Going westward, I managed to see two movies, or at least all of one and most of the second. First up was The Painted Veil.

I found this one interesting, especially in light of the fact that I have a friend living and working in China right now (teaching English, not curing diseases). I enjoyed the scenes of pre-revolutionary China, with distrust and conflict with the European colonizers, but the wayward wife seeing the error of her ways and rediscovering her love of her tirelessly valiant husband was a bit tired.

Next up on the westward flight was Partition. This is an intercultural love story set against the backdrop of the senseless post-colonial violence of the Indian subcontinent at the partition of India and Pakistan. I came away more convinced than ever that religion is a force of evil (I think that there are many good religious people, but they would probably be good people anyway) and that religious and cultural violence will do us all in if we can't get past it and be more secular and accepting. I only wish that I had been able to see the end of the film, as I don't really know who died and who lived, or if the fated couple lived happily ever after! (Help me out if you have seen it — the system shut down for landing when all the main characters were in the train station in Pakistan!)

On my eastward flight, I was much more restrained and only attempted one movie. My selection was Children of Men.

I have always been attracted to this sort of not-too-distant future post-apocalyptic theme. There is nothing like a bleak future to draw me into a film. Again with the hatred of 'others' in the film, I am not sure that this isn't our actual future, and I never really understood what actually led to the infertility problem. I also don't understand why our hero didn't just carry his shoes with him when escaping from the kooky revolutionaries with his pregnant charge. I can't imagine navigating a conflict-torn refugee camp in flip-flops!

As profound and in-depth as usual, no? Who needs thumbs up or down when you can just gloss over the plot lines, comment on the outfits and the underlying social problems and be flippant? Roeper and whoever his guest host is this week can just stand aside.

Back at home in Montréal

I just got back from spending a week and a half with my family, following a week's visit from my Australian sister. I always come away from these visits (in B.C. — my family rarely makes it to Montréal to visit me) very happy with how all of us get along. I have one brother and three sisters and we all manage to find endless ways to amuse each other, to act silly and to play endless games of cards, scrabble, etc., all the while roaring with laughter. I don't think I'll ever understand people who avoid contact with their siblings, or just don't get along.

I had to avoid mentioning the imminent visit of my Australian sister for the last few months, as she was coming here on her (and my) way to surprise my sister in Kamloops, B.C. on the occasion of her 50th birthday. We surprised her on her 40th birthday and we thought that we were pulling it off very well this time, too, with all kinds of twists — having it almost a month after the actual date (after tax month was over) and all kinds of other care we took to keep things secret. My brother-in-law even went to her employer to arrange time off of work for her while we were visiting. And in the aftermath of all this sneakiness, she had some 20-20 hindsight which identified the clues that would have revealed all if she had put them all together at once. Still, it was a great occasion to bring us all together, and to celebrate the sister who brings us all together in so many ways.

Something we all discovered about ourselves is that we DO have a tendency to be right about everything all the time (at least if you listen to us). I'm sure that this is an endless source of frustration to those who have to deal with us … but they will eventually come around, recognizing the error of their ways and doing things our way. The various in-laws have learned to avoid situations where they are highly outnumbered. ;-)

I'm sure I'll have more things to share about the last few weeks, but I'll limit myself here to one story that illustrates the above paragraph, leaving off with a phrase that we all kept repeating, erupting into laughter each time.

A couple of years ago, my Australian sister was in Kamloops in a small store buying postcards. The postcards were 30 cents each or 4 for $1. (I may have this lightly wrong, but it isn't the main focus of the story.) She selected 12 and went to the cash to pay for them. The cashier said that would be $3.60 (I guess the tax was included), and my sister tried to explain that, since they were 4 for $1, they should total $3. "But you have 12, so they are 30 cents each," said the cashier. My sister, getting more frustrated, pointed out that she could buy 4 for $1, go outside, come back and buy 4 more for $1, then do it again and end up paying $3 for the 12.

This led the cashier to the phrase we kept using on each other all through the visit: "Well, you can do it that way if you want."

It's almost painful to be right all the time. ;-)

Stylin' Friday: On the Source of My Infection

A short look back — or not — on how and when I might have become infected with HIV in the form of a Shakespearean sonnet, complete with iambic pentameter. (If you haven't read Will S's blog, you should try to find it here, here or here). While I am pretty sure they didn't have the interweb back then, I am equally certain that the Bard is splattered all over the virtual world, perhaps even wandering around Second Life looking for characters.

Enough with the prologue, bring on the sonnet!

Whither My AIDS Indeed!

Shall I attempt to pin the blame on you?
You gave me STIs and God knows what
My throat got sore, my penis burned, and ew!
What are those warts a-growing in my butt?

Or maybe it was you, the guy I met
While walking home at 3, and through the snow
I clearly said I didn't want to get
Fucked condomless, but you did not hear "No."

I know there were some other times as well
A few, a handful — all that I regret
But on these things I know I cannot dwell
As angry, sad or spiteful I might get.

The answer is as plain as plain can be:
My energy is better spent on me.