Thursday, May 17, 2012

Life with a Chronic Illness (Or Two)

Chronic illnesses are, by their basic definition, long-lasting. Some, like Bipolar Disorder, I expect to have forever. I would be utterly shocked if a cure for any of the major psychiatric ailments is discovered during my lifetime. Metabolic and autoimmune disorders, however, are more fixable. If not put aside altogether, they may be controlled with the proper course of treatment. Addressing even the most basic problems of each is not nearly as easy as it may first seem.

The endocrine system is complicated. Its diseases and illnesses interconnect and interlock with other bodily processes and functions. For me, hypogonadism (abnormally low levels of testosterone) was only the first layer of discovery. Over the past year and a half, tests have slowly eliminated potential problems and shed light on others. A patient begins treatment at a big picture setting, and then focuses inward slowly, steadily, zeroing in on the likely culprits.

It’s never just one particular problem. I’ve been a patient so long that I stopped expecting swift resolution in any context around fifteen years ago. From the very beginning, my parents took me to specialists. This started early in childhood. By now, I can converse with doctors like a medical textbook, with note-perfect recall and flawless accuracy. A recent doctor even assumed that I had gone to medical school myself, based on what I knew already. When it’s your life at stake or at least sorely out of balance, one learns to do one’s research. I’ve memorized jargon instinctively.

You’d do the same thing, I promise. As it stands, I have a concerted interest in reading through voluminous, stodgy online medical journals. When a new medication is released, I’m the first to know. My life has been modified a thousand times, literally and figuratively held under a microscope, and filtered through a billion lenses. And still I’m here, a survivor, clinging to the scattered remains of a few substantial shipwrecks. In the middle of everything, especially the bombast and drama, one can only live in the moment.

Kurt Vonnegut put it well in his famous novel Slaughter-house Five. Vonnegut’s been on my mind a good bit recently. In researching an article I wrote, I’ve learned much about his biography. He spoke about the burden of expectations and outcomes, especially when they seem to be played on an endless loop.

My name is Yon Yonson, I work in Wisconsin, I work in a lumbermill there. The people I meet when I walk down the street, They say, 'What is your name?' And so it goes.

Trying to explain what happened this week would fill an entire page. I’d probably lose you in the complicated procedural soup. I’m used to having phlebotomy wounds where my bicep joins my forearm. Small plastic cylinders of urine have been hastily dropped off in front of lab technicians. Last night, I had a plastic mask strapped over my nose and mouth for eight hours. The remains of where the electric leads were attached underneath my ears and stuck to my ankles left behind a greasy residue. It was only washed off with a badly needed shower.      

This is my life. If I can articulate myself well to you, it’s because I’ve meticulously described symptoms, feelings, and impressions long before now. Medical practitioners likely breathe a sigh of relief with me once properly introduced. I like my doctors, usually. Once or twice, a few have been afraid I was trying to trap them into a malpractice lawsuit. They were mistaken. I want to be well, not to make trouble.

Without being dramatic, I wake up every morning next to ten prescription bottles. By now, I’ve lost count of how many medications I take daily. My best guess would be around seven or so. That total has shrunk to four and swelled to as many as ten. It often bothers me wondering how many prescriptions I’ll take when 
I’m fifty, considering that many people who are fifty often take the same drugs I do.

I would not have chosen this life for myself. I can’t imagine many people would, if given the option. What gives me comfort is a friend who also struggles with chronic illness herself. We commiserate over lab visits and griping about the still sky high cost of medical treatment. Another thing that brings me great comfort is belief in God. The laws and logic of humanity have never provided me consistent answers. As far as I’m concerned, trusting in something larger than me has made perfect sense.

Even now, I do admit that I sometimes lose patience. There are certain days where I obsess about my disabilities and nothing can comfort my mind. Fortunately, it’s not always this way. My strengths usually overshadow my weaknesses. And it is on that note that I’d like to draw this extended soliloquy to its fitting end.     

No comments: