Wednesday, February 03, 2010
It's Not The Virus, It's The Maintenance
I've been finding myself in a very contemplative mood of late, partly because I have a bunch of anniversaries approaching. On Sunday, I will have 3 years sober, and a few weeks from now, another birthday. In early March, it will be 7 years since I was diagnosed with HIV. I have also been very aware of time and the inevitable progression of it as I think about this blogging project for the college course.
The project has just started and most of the students I am working with have only just begun to post personal blogs as well as "Did You Know" pieces. But much of the "Did You Know" focus seems to be on other countries, and people that are far away. Almost as if the concept of HIV/AIDS can be kept at arms' length. Maybe that makes the idea of HIV less threatening. So I thought I would try to post a Did You Know piece of my own, that may personalize HIV a little for the students.
Did you know on Friday, I have an appointment for labs? I do "my labs" four times a year. They measure the viral load in my system (currently undetectable) and the number of T-Cells (CD4) I have (currently 970). If my viral load begins to rise, or my T-Cells begin to fall off dramatically, that would probably be a sign that my current medication regimen is failing. I am fortunate in that I responded well and quickly to the first set of meds I was given. Should my regimen begin to fail, I have many many combinations of drugs available for me to switch to. I also have many standard blood test results that are looked at, including liver function, kidneys, blood sugar levels and cholesterol numbers. Any of these functions could be affected adversely by certain medications. I get and keep a copy of all my lab reports, which is basically two pages of numbers. I have learned what each of the abbreviations stand for and can actually read my labs without any professional help, but we still go over all the results during a follow-up appointment. Regular labs will hopefully provide an early warning should something start to go wrong. I have only missed one lab appointment in 7 years.
The lab appointment itself is largely uneventful, once you get used to getting stuck with a needle. They take two or three vials of blood and you are out the door. The whole process from arrival to departure can be 20 minutes. I didn't have a lot of experience with doctors growing up, regular check-ups weren't part of how I was raised. Discounting my childhood inoculations, I could probably count the number of shots I was given on my ten fingers. I have never donated blood. So in the span of the first month or two of my original diagnosis, it seemed as if I was getting stuck every time I walked in to the clinic. Blood tests and flu shots and pneumonia prophylaxis and TB scratch tests. Needles, needles, needles. But the upshot to all that is I can take a shot in the arm, in the ass, even Novocain in the gum like a champion. I actually now tell the dentist to stick me again if I feel even a twinge of pain during an appointment. Needles don't bother me at all.
I take (at current count) about 16 pills a day. But only five of them are necessary to keep me alive. Those I take all at once every morning. And they make me nauseous for about 1/2 hour. I've probably missed two doses of my medication in the last 3 years.
The rest of the pills are "extra credit" as it were. I take vitamin supplements as well as extra iron and a single aspirin. I take extra zinc on top of that and Fish Oil supplements. I also take Lipitor, because something other than my diet is raising my cholesterol. It's probably the meds. And I take prescription Immodium twice a day, because the HIV meds (specifically Kaletra) give me diarrhea. Every day. I've had it pretty much daily for about 8 or 9 years (I drank a lot). The last year, I've found great relief with a combination of Immodium and Metamucil. But if I don't take either one every day, it's not pretty.
Between my meds and the supplements and the extra extras I take to make it all work, it seems that I spend a lot of time traipsing back and forth to the pharmacy and the clinic. Sometimes I get lucky and a bunch of things run out together, but for the most part I am forever filling and re-filling prescriptions. And whenever I get whiny about that fact I remember that I am blessed to have them, and doubly blessed that New York State pays for them. I am uninsured, and pretty much always have been. If I had to pay for my own medications all this time I probably would have recently died.
And it does take a bit of planning to make sure that I don't run out of the pills that keep me alive. I'm lucky that my pharmacy will call the clinic and have the prescription re-issued if I need it, and I can call the pharmacy myself for refills by phone. It's a juggle, but I always wonder about people that are less capable of keeping those balls in the air. Do they simply run out of meds and not take them until they get around to getting a new prescription? How does that affect their resistance to the meds?
There are dental appointments twice a year (although I had 14 dental visits in one year) and therapy once a week. I also attend a weekly HIV+ support group every Thursday and tie the whole thing up with a nice Alcoholics Anonymous bow with about 4 meetings a week.
Somewhere in there I need to find time for a job (currently part time), three dog walks a day, a little extra work with the Community Advisory Board, laundry, gym, blogging and porn and it's no wonder I frequently can't figure out where the day has gone.