My Drug Trip
I HATE TAKING DRUGS! Even some herbs bother me. I'm allergic to just about everything on the planet (at least it feels like that!). So, cancer or HIV are not my "diseases of choice". Two years ago when I found out I was HIV+ I just knew I would be dead within a couple of months if I started medication. So, I put it off. My viral load was under 5000. I told myself that I'd worry about meds if it ever got over 10,000.
That dreaded day arrived in mid-February, 1997. My nurse practitioner got together with my doctor, and they presented me with 4 different drug combinations to choose from. It would be two weeks before I was to see my nurse practitioner again, and naturally, I became hysterical. I pulled out my will; I just knew I wouldn't survive the meds.
On the weekend before my Monday appointment, a friend came by. He had gone from 3 T-cells up to over 200 on a drug combo with a protease inhibitor. Then, a year later, his liver and kidneys gave out. He didn't look bad, but he didn't look as great as he had over the summer. I immediately resented the emotional seesaw he must be on. As usual, I got angry.
The Big Choice
The drugs I chose to take were Norvir and Invirase instead of something milder. Yes, I know - Why the drug with the worst side effects? Well, I figured if my liver was going to get sick, I'd rather do it now, while my immune system was still strong enough to deal with it. The second reason was that at USC, Debbie Johnson, PA was doing a study that was knocking viral loads way down. She was not using the standard dosage, but a lower dose. She found that the side effects were less severe. It made sense to me. Most research is done on men, and, as we know, our bodies don't react the same to medications as men's bodies.
So, I'm ready. Monday morning arrives. I go marching into my appointment ready to announce my decision and ...I crumble into a hysterical, crying lump. "I can't do this - I can't take these poisons!". Then the little voice inside whispers, "But you promised when your viral load went over 10,000....".
I went home with the biggest bag full of medications. I put the Norvir in the refrigerator. I put the Invirase in the cupboard. I didn't want to look at it while I made myself something to eat.
Next, I ate half my meal and took 3 Norvir and 2 Invirase. Then I finished my meal, thinking, maybe it won't be so bad. After all, it was only half the dose. But suddenly, BAM! I was sick as a dog, bouncing off the walls and staggering into the bedroom. My vision was blurred and I was so dizzy ...I couldn't breath... a panic attack... I called Mary. She came over: "We're going to get you through this", she told me. "Take it day by day, don't think about how it's going to be in three weeks."
Tuesday morning I took my second dose and had the same reaction, minus the panic attack. I described my symptoms to my nurse and she told me it was okay to stagger the two protease inhibitors - in other words, to take the Norvir and the Invirase 1/2 hour apart instead of at the same time.
Wednesday/pm: Staggering the meds seems to be working. I took my dose and laid down to wait for the sickness & dizziness to hit me. NOTHING HAPPENED. And now at day 8, still, nothing. Only occasional, mild nausea & a slightly spacey feeling. Not the 3 or 4 weeks of misery I had expected, but only THREE DAYS to get over the worst of it.
I'm having another viral load test in two weeks to see if this dose is working for me clinically. If not I will increase my dose until I'm satisfied with my response to the medications.
Women: Take control of your health care. Question your providers. Call Women Alive to get information and input from other women. Tell your provider what you think, what you feel and what you want. After talking with my care provider, I took all the information over to the Women Alive drop-in center. They helped me to go over all the information and make an informed choice about my treatments, for my virus, for my body. Thank you, Women Alive!
This article was provided by Women Alive. It is a part of the publication Women Alive Newsletter.