Saturday, March 30, 2019

Performance Based Management: Life and Death

~This is the second chapter of my year-long exploration of
living with type 1 diabetes for 50 years.~

Testing, and living with the results of those tests, is a constant element of living with diabetes. A small plastic case with an eye dropper and a test tube stood prominently on the bathroom counter of my childhood. I’d start the day by peeing in a cup, concocting a mixture of water and urine using the eyedropper, and drop a highly caustic tablet into the test tube. The reaction was immediate: bubbles, heat, and the resulting color to be matched against the chart, recorded in the log and delivered to the doctor during a visit.

This everyday routine has evolved into the 5-second blood test I use now. Those daily metrics culminate in the 90-day average of the HbA1c test. When a medical practitioner looks over these results, it often feels like a judgment day. The words I hear are often, “These numbers are too high.” I know I’m on the low range of unacceptable, and I stammer some rationale excuses and justifications while embarrassment, shame, regret, and fear toil and rise to the surface. I am completely below average and have been since I started tracking the results in 1999.

Samuel Rahbar, an Iranian researcher who eventually immigrated to the US, discovered specific hemoglobin anomalies in diabetics and refined the HbA1c test in 1968. The HbA1c is now the standard by which a diabetic’s self-management performance is based. The only way to study for the test is the diligence of every day and the commitment to managing the food, the exercise, and insulin. It’s largely an intuitive charting of math and sensation and recalibrating with the feedback to somehow get back on track when I’ve gone rogue into the landscape of what the hell.

On bad days, this can result in 5 tests a day to try and see how the progress is coming along with mitigation strategies. If the blood sugar is too high, I experience a general sense of stupor and an increased risk of complications. Too low and there’s an experience of unsettledness, panic, and the possibility of loss of consciousness.  The small drop of blood placed carefully on the thin plastic strip is the only way to know if your general intuition is on track. Sometimes it isn’t.

Testing strips are quite expensive in the United States. While the R&D to develop the process to deploy enzymes to measure the electrical energy in the blood was extensive, the manufacturing is cheap. Companies are estimated to generate an 80-90% profit margin on each strip. Constrained by budget, some diabetics base their self-management on a single point in time~like looking at your bank balance as an indicator of quarterly cash flow. The market has evolved a robust gray market for test strips where people can sell their unused strips (paid for by insurers) which sold to people with high-deductible plans looking to save.
Searching for testing strips for my specific meter became a preoccupation during my year-long stint in rural Thailand. Note that I could have replaced my equipment with what was readily available in the country, but I was stubborn and not paid much. Once my American stock ran low, I traveled south on a 5-hour bus ride to explore pharmacies in Bangkok’s various mega malls. Navigating through huge labyrinthian towers escalated through brilliant light and marble, I eventually found the motherlode at the pharmacy (half-price from what I paid in America), stocked up with supply for the next three months, embarked on other errands and sightseeing, returned back to Kampheng Phet.

I embarked on a rigorous regime living on the outskirts of this small rural city and buckled down on limiting testing to the morning and during times of the day when I felt uncertain. But, eventually, my supply again diminished and I had to find a more local alternative. Navigating the winding streets of the small city on my bike, where signs in unfamiliar text and landmarks remained in a hazy uncertainty, were a foray. On one visit to the largest local street market, where the damp burlap bags of croaking frogs on the sidewalks were positioned near their familial corpses sprayed and barbequing across a crux of skewers,  I noticed a larger established pharmacy on the corner. All sorts of medical supplies were packed to the ceiling. As I took it all in and wandered around, my prize sat tucked away in the corner. I had a local supply.

The results of my rigor: eliminating booze and bread, bicycling in the forest refuge every day and, maintaining a quiet, austere, and self-directed experience worked. The A1c reading that I had done just before I left Thailand was a perfect 6.5 and I’d lost 25 pounds. I was living on my own and on the edge,

Chuck Comstock lived as a hell-bent extreme adventurer who, after he died in 2000, was characterized by a mutual acquaintance as dying from “not managing his sugars”. When I lived in Key West in 1989, I remember another fellow pedicab taxi driver who lost consciousness while on the bike and disappeared. A physically unqualified truck driver killed a volunteer driver and a young boy on the Maine Turnpike in 2016. He was diabetic and out of control.

March was rough for self-management. A bit of stress, some bad choices, and an inexplicable, painful flare-up with my teeth created a context for a perfect storm of self doubt. In groping for context, I asked for an HbA1c test and the results were much too high. I increased my insulin dosage, slowed down, and determined to carry on. The tension is always there, the desire for normalcy, the thirst for autonomy and the aim for improvement. Diabetes both defines my life while I stubbornly refuse to compromise my life. Ultimately, I have to stay tuned to the numbers and hope for the best.