I have been very good, in the past, at publishing a little reflection on the state of my HIV on the anniversary date of my diagnosis. I am very late this year, probably for a few reasons.
I have a number of little irritants to talk about this year, but not a huge focus on my HIV experience, which is probably because of the great privilege with which I am living that experience. I have taken to talking about that in settings where I am speaking to groups, recognizing that my experience as a white middle-class educated man living with HIV in a society that seems to have been built for all of those things except the HIV is not the experience of others, even others in my own society and country.
Even the part where I’m gay on top of all the rest is a bit of a privilege when it comes to HIV, as my community has a long history with this disease and its impacts, and significant portions of the community are friendly places in which to be openly HIV positive.
But I do have complaints, and all those other attributes urge me to share them. You can’t spell KAREN without KEN.
My biggest challenge this year is probably the retirement of my doctor. Not the first time this has happened to me (it’s all about me, after all), but the first time there was someone to transfer me to in the same clinic. Not this time. The clinic did undertake the mammoth task of ensuring that all of my [now retired] doctor’s patients living with HIV or on PrEP would be followed elsewhere. My doctor even gave me 24 months of renewals on my prescriptions, but cancelled what I expected to be my last appointment with very short notice.
I had an appointment to see my new doctor for the first time in November, but as chance had it, it fell on a day on which I had a superceding commitment and I had to reschedule. The earliest date I could get was 3 January (a few short days from now), almost 11 months since I last saw my doctor, and about 6½ months since my last bloodwork. I have an accumulation of things to talk to my new doctor about, but most of them are not about HIV. I’m quite confident that my HIV continues to be well-controlled.
I will have to start inquiring about medications for psoriasis, which I have been more or less managing with something topical (when I apply it), but which is now making itself common in places I can no longer reach. The spin-off of that is also the psoriatic arthritis that makes a lot of my movements more painful than they should be, so point number two (or maybe number one) will be getting back to my full dose of anti-inflammmatories, if my embattled internal organs can take it. Nothing specific about my organs, just the burden of processing HIV meds and other meds for the last 26 years.
At a certain point, I might have to choose between pain every day and bigger problems with my liver or kidneys. At this moment, I’m not sure on which side I will come down.
The additional impact of the arthritis is related to my medication adherence, in that it makes certain kinds of packaging more challenging for me.
The dreaded blister pack! I’ve had tinier pills in this format as well, and what seems to happen to me is that I press and sometimes the pill pops out and flies across the room, rolling under furniture and generally hiding from my ability to detect it. I’m not supple enough these days to be able to hunt for a tiny pill, or even to easily pick one back up from the floor when it is in an obvious place.
So there we have it. HIV treatment 26 years old going fine. Psoriasis now rampant, psoriatic arthritis making each day more painful that it should be. Plus a couple of other things I probably don’t pay enough attention to.
But alive and working much later than I expected to live when I go my initial late diagnosis.
My most
recent results (27 June):
CD4
count: 247
CD4 %: 27
Viral
load: "Not detected" (test sensitive to 20 copies/ml)
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