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.