I’ll be honest: I never did like math. I always thought numbers were generally a necessary evil, and much preferred words – that’s why I’m a therapist and a writer and not a mathematician or engineer. But for people living with HIV, it’s inevitable that we have to deal with numbers, and lots of them. There are numbers that come back in our lab reports every few months or so like our viral load, CD4 count, T4/T8 ratio, triglycerides, cholesterol, and testosterone level. There are others such as our blood pressure, body measurements (to track lipodystrophy and metabolism changes), how many years we’ve been diagnosed, and how many milligrams to take, of how many medicines, so many hours apart. Oy; I have a headache already.
But managing these numbers, making sense of them, and having them work for us – rather than against us – involves seeing numbers as a tool for life, not life itself. I remember years ago in school, my math teachers trying to persuade those of us who weren’t “into” numbers into having a better appreciation of them — saying that being able to calculate and manage numbers gives our society tools for living like making a recipe or building a bridge. Our numbers should be seen as signals and suggested recommendations for action that are open to interpretation and critical evaluation, not cruel slave-drivers. What the numbers mean and how to respond to them are important parts of discussions with our doctors and other key people in our support system for managing HIV over the long term. For example, recently a reader wrote to me and described his anxiety because he was down to 10 t-cells and was facing the decision to start taking his first medications. He had been diagnosed for 5 months, and his viral load was in the tens of thousands – three sets of numbers in the first paragraph! These numbers, for him, added up to panic.
When I responded to him, I tried to offer a suggestion that he see numbers as “signals”, and a guide for what to do in his life. The high viral load and the very low t-cell count were signals that he needs to take at least some action to take care of himself; at these levels, he is vulnerable to things like opportunistic infections. They are a signal that he needs to consider a medication regimen to preserve his health, and to discuss his options with his HIV-specialist doctor. The part about being diagnosed only 5 months is another signal that he is probably still in a lot of shock, and he will need emotional support. I asked about his support system – friends? Family? Support groups? Therapist? Other sources, like 12-step programs, spiritual groups, recreational groups? He was in AA and active with several close friends in an HIV support group, so he was on the right track. If he had these numbers and didn’t have these supports in place, those numbers would be a signal to look for and access more social support.
When he mentioned how daunting the prospect of taking meds at least twice per day (depending on the regimen) seemed to him, I asked him about other things he did already twice per day. Certainly, eating is one of them. Peeing and pooping are others. Brushing his teeth is another. Even changing clothes or showering are things many people do twice per day, every day. If someone told you that you would eat 50 pounds of potatoes in your lifetime, it might sound like much more than you’d ever be hungry for. But if someone described that as broken down into eating French fries once a week, that 50 pounds of potatoes doesn’t seem so filling anymore. Discussing numbers in this way made it feel less daunting for the reader; the “big” number, when coupled with a plan of action and the proper perspective, became a “smaller” number in his eyes.
Other numbers that are routinely monitored in HIV, such as high triglycerides or low testosterone, are “signals” that perhaps some nutritional counseling might be in order about foods lower in fat, or taking testosterone patch, gel, or injection supplements. These numbers aren’t really life-threatening, but they are useful tools for everyday life when we’re deciding whether to eat the salad or the burger with cheese at today’s lunch.
I still get a little keyed up every time I have to have blood drawn for lab reports, or when I’m waiting for the results, eagerly anticipating being able to celebrate “good” news or respond to “bad” news. But I realize in either case, I will take the signals as just one part of my overall plan for taking care of myself. Even before I get my results, I ask myself, “How do I really feel on a daily basis? If I didn’t know what the numbers were, how would I guess they would be?” This helps keep me from freaking out too much about getting one set of “bad” lab numbers; that just means that I need to make some adjustments in meds, diet, or other things that are relatively controllable, getting some good advice from providers I trust, while keeping the perspective that it’s how I really feel that matters most. Very few numbers from lab reports are urgent; most numbers that need attention can be modified with some good advice from a doctor and nutritionist, and making some changes in daily routine that usually aren’t too disruptive. When we keep all these numbers in the proper perspective for taking care of ourselves, we’re looking out for Number One.