When I was diagnosed almost 18 years ago with a CD4 count of 4, I didn’t really expect to be around this many years later. Oh yes, my doctor said all the right things about living as long as my friends (yes, even then!), but inside myself I didn’t really believe him. After all, I was kind of staring on the precipice and I’m not all that nimble.
I’ve done my part along the way, missing a handful of doses of my original Crixivan/d4T/3TC regimen — that’s three times a day fasting on that Crixivan and for more than seven years, folks.
As I started to develop my hump, signifier of my particular experience of lipodystrophy (all accumulation and moving around, no sign of the fat loss that might have calmed me), I made my first switch, to Sustiva/Tenofovir/3TC. On that simpler regimen, I think, oddly, that I missed a few more doses, but mostly I missed sleeping properly. My intolerance of that treatment lasted me about another two and a half years (I’m a bit conservative on abandoning the things that are keeping my viral load in check) and I switched again, to Intelence/Tenofovir/3TC, which I’ve been taking ever since.
The so-called “pill burden” has never been all that important to me, as I take a handful of things all at once, and have three times per day for dosing: before and after breakfast and after supper. Only six of my fifteen pills each day are for HIV, but I have that all under control. Viral load quite under control, too, CD4 count not going up or down anytime soon (it hovers in the mid-to-high 200s).
This last thing is what helps me maintain my personal pessimism.
I should really say that my pessimism doesn’t extend to anyone else. If there is a good time to have HIV, it is probably now — easy to take treatments, good news on taking treatment early and on the preventive impact of an undetectable viral load, even effectiveness of PrEP for our negative friends.
I even heard a doctor speculating that people with HIV today might even live longer than our friends without HIV! The secret? We see our doctors three or four times a year and most of our friends don’t have that kind of health monitoring. Someone needs to tell the insurance companies about that increased longevity, I think.
So back to me. When I was diagnosed, I was working in a relatively poorly-paid community organization job and the issue of retirement savings was not really on my radar, or at least not in the realm of my possibilities. The diagnosis, despite my doctor’s kind words, gave me a reason to revisit any concerns I might have had about living beyond retirement. As I changed jobs and started to have more disposable income (what a term!), I made decisions to prioritize living now, with a little commitment to charitable giving on the side.
I don’t shy away from indulging myself, and even that might be an understatement. After all, why would I sacrifice and scrape by now when I’m still not expecting to reach the age of eligibility for Old Age Security? (We can thank the government for putting that just a little further out of my reach by raising the minimum age to 67.) Not I! Eat, drink and be merry! Go to the circus as often as possible, the opera four times a year and a movie every Friday evening that I can! Sponsor my friends in the AIDS Walk! Save nothing…
Well here I am, all these years later, showing no sign of sliding toward my early demise and I’m now only ten years away from the magic date…twelve if you go by the government’s calendar.
All this good news on HIV treatment has thrown a real monkey wrench into my retirement plan. I might have no choice but to sue those evil pharma companies for stealing my pessimism and making me live too long, but I suspect that might not make it past a judge.
Wish me luck!