In Celebration of Meds
A Personal Story of Frustration and Gratitude
I woke up this morning feeling absolutely fabulous. It was an eerie feeling. I was afraid to get out of bed. How could this be? I felt rested. There was no headache or nausea. My brain didn't feel fuzzy. I was able to actually lie there for several minutes just enjoying the cozy, warm feeling of being under the covers without having to abruptly race for the toilet with the usual early morning "tummy trouble."
It was as though I was stuck in a time warp; I pictured it being early 1981 "B.I." (Before Infection). Did I dare get out of bed and blow this whole fantasy feeling? I got up and wandered to the bathroom. A glance in the mirror confirmed what I was feeling. My skin looked clear. My eyes looked bright. My stomach was alarmingly flat (oh my God! What kind of cruel joke was this?!). No dark circles lingered beneath my eyes. In short, I felt like a "neggie." Certainly if someone were to come in right at that very moment and test my blood, there would be no trace of the AIDS virus in it. I felt certain of that.
I soon went downstairs and was confronted with a rather harsh reality. Just because I was having a particularly good day, it didn't mean that I was free from that old ball and chain that clung to my ankle every waking moment of every single day (and I don't mean my husband!). It was time for the first round of my daily medication (meds). I put water on to boil for my oatmeal, filled a glass with orange juice, then began getting all of my pills together. 8 Amprenavir, 1 Combivir, 1 Prilosec (for the acid reflux brought on by all the meds), my vitamin and an Acyclovir to keep the herpes at bay.
Whew! I'd recently built up a resistance to the Diflucan that I was taking for the prevention of yeast. At least that was one less pill I had to get down in the morning! For those of you who are unfamiliar with the drug Amprenavir (aka; Agenerase), let me just say this:
When my pharmacist filled my prescription for the first time and handed me over my first one month supply, I thought he was joking. I really expected to see a hidden camera somewhere and Allen Funt running in to say, "Smile, you're on Candid camera!" There were 2 large white bottles holding 120 "gel caps" in each, I took out a ruler when I got home and measured these little darlings because I still couldn't believe that I was supposed to swallow 8 in one sitting... twice a day!? Crass as it may sound, I think I'd have had an easier time shoving them up my butt, and let's just say that no foreign objects of any kind have ever been up there, if you catch my drift.
At my doctor's suggestion, I fell into a routine that helped me get them down. I'd take a bite or two of my meal, swallow two capsules; another few bites, another two capsules, and so on, until all I had left to take at the end of my meal was two capsules with a little bit of water. I can't imagine eating a big meal first, and then trying to get all eight of these things down! I stayed on this regimen for three months, adding three Sustiva capsules and a Bactrim at bedtime. It really wasn't so bad; I've been on worse regimens. Occasionally I'd have some stomach bloating and numbness in my mouth and lips if I tried to get away with eating a "light" meal, but other than that, the 90 days were relatively uneventful. That is, until I got my next batch of blood work done. Although previous tests had shown that the virus was totally "sensitive" to the Amprenavir, it was not working like we hoped it would. I became depressed. I had the thought for a fleeting moment that I didn't really want to play anymore. It was just too hard, and for what?
My doctor calmed me down and told me that there were few options available to us until after the 1st of the year when some new (and "promising") meds came out and would be available for compassionate use. He wanted to consult with a colleague before making any drastic changes and would call me within a week; until then, I was to continue on my regular regimen.
One week later, as promised, my doctor called me with the following decision: I would increase my Amprenavir (aka: horse pill) dose to 8 capsules 3 times a day! Previously I had the luxury of not having to take anything with lunch; those days were gone. It was not easy getting used to taking 24 of these puppies in one day, sometimes only 4 hours apart, along with my other bedtime meds, Yikes!
When my husband comes home and asks me what I did all day, I am tempted to say, "Hmmmm.....let me think. Oh, yes! First , I took a handful of tasty pills, then I ran an errand or two, then I took another handful (after which I turned a lovely shade of green because I took them with a nice healthy salad), then I made dinner and took yet another handful of these tasty morsels. "And how was your day, Dear?"
I envy those of you who are lucky enough to be on a simple "reduced pill" regimen, such as Combivir and Sustiva. What's up with that? Only 5 total pills per day? Why can't that regimen work for me? I might even gladly go back to taking Crixivan (yuck); at least that was only a total of 12 pills per day (if memory serves me, which it usually doesn't).
I've been on them all... you name them, I've taken them. There's a twisted part of me that would like to have a few of the people who created these medications take them for just a week and see how drastically their lives are affected. Don't get me wrong, I'm grateful that they exist; If they didn't, I (and many of my loved ones) probably still wouldn't be here taking up space on the planet, but come on! Do they really have to occupy every waking moment of our existence?
I offer up a toast to the person who can come up with a miracle pill for HIV/AIDS that can be taken in as small a dose as one in the morning and one in the evening with little or no side effects. Is it possible that such a thing could come to pass in the year 2000? One can only hope.
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This article was provided by Women Alive. It is a part of the publication Women Alive Newsletter.