A reader recently asked me this question in a comment. My response was long enough that I’ve decided to just use it as a new post. I’m lazy that way these days. My blog is a mess. I want to repair all the broken links and move it to yet another new domain, but that’s not going to happen anytime soon. As I mentioned in my last post, most of my writing lately has been on Facebook, though I deactivated my Facebook account for 24 hours yesterday. Look what happens: I’m blogging again!
Thanks for asking, Fathe. I’m not sure what you mean by “well.” I am taking a fairly standard dose of ARVs: darunavir, a protease inhibitor (boosted with ritonavir), and dolutegravir, an integrase inhibitor. I have achieved “undetectable” PCR viral load a few times, but have not been able to maintain that status, though that marker remains extremely low. The latest test said “detectable,” but was unable to quantify how much virus was detected. WTF?!
I’ve reversed the decline in my CD count, but the increase in that marker has been modest, at best, and it seems to have stalled out around 200. Based on the CDC’s definition I have “full blown AIDS.”
Surprisingly (to some), I have yet to experience any AIDS-defining opportunistic infections. No pneumocystis/jiroveci pneumonia. No Kaposi Sarcoma. Based on blood tests, I am the picture of health, other than these damnable t-cell counts and percentages.
HOWEVER, in the last year or two, I have had to have two surgical interventions to remove kidney stones. No explanation for the cause, other than I’m a “stoner,” a person who forms kidney stones for no clear reason.
I believe I have had more DVT blood clots in my left leg, based on symptoms, but I do not have them confirmed or evaluated. I know the drill, and I deal with them at home. That leg looks like chopped liver, and most nights I am awakened every two hours by leg cramps. I’ve been up since 3 am today. I’ve soaked in a bath with Epsom salts, and now I can’t go back to slept from the dread of another cramp.
I’m due for total hip replacement Aug 7. It is not the result of osteonecrosis, as I feared, nor even arthritis. My femur is misshapen in a way that is physically impinging on the hip socket. Why it has taken 60 years to manifest the way it has is a mystery to me. I’ve been intermittently disabled with pain in that hip for over a year. I’ve bought time by getting x-ray guided steroid injections every three months. They always worked to relieve much of my discomfort… until last month. The last injection had no effect at all. I am now dealing with disabling pain in my left hip. The pain never sleeps, so I rarely do either. Pain medications, including cannabis, help me manage the pain, but those don’t seem to work very well these days, either.
The drug that seems most useful in numbing the pain is alcohol. Kentucky bourbon, to be specific. Legal and available, but not approved medical use and not covered by insurance.
If there is one drug I dread more than ARVs, it’s alcohol. I fear I will lose myself in an addiction that will be hard to break, even for me.
Despite these plaintive woes, I have been very involved for nine months or so with a remodeling project that is crucial to our retirement security. Michael and I intend to try to get some return on investing much of his retirement IRA on a short-term rental house across the street.
I continue to be involved with LGBTQ issues here in Kansas City. I’ve sat on a committee to erect the first LGBTQ historical marker downtown. I have spoken at area colleges about the early struggle for gay rights in Kansas City, as well as the response to AIDS in the 1980s.
I was very involved in the delegate selection process during the last presidential election, supporting and mentoring young people to attend the Democratic National Convention as supporters of Bernie Sanders.
I have also tried to attend and take part in the Midwest Men’s Festival, though my hip pain prevented me from being fully present there last summer, and it looks like my condition will be no better this year..
Finally, and for me, most importantly, I am expending much energy and resources to help a young gay man from Venezuela to escape the chaos and social breakdown of that country and get him to the United States. Since my blog has always been about being as honest and transparent as possible, I will share here first that I think I’ve fallen in love. Again. That is not a threat to my 36-year relationship with Michael. We have also had an open and at times, polyamorous relationship. With luck, our family will grow to three in a couple of months.
There. I hope I’ve addressed your question. I am not well. I have never been well. But I continue to function.
I still do not see the correlation between HIV and my health; only a correlation in increased medical problems when I am taking the ARVs.
NOTE: I have updated the charts I use to track the trend lines of the markers I mentioned above: CD4 and viral load. They can be found under the “Medical” tab of the homepage, or by clicking here.