Peeing in a Cup

When I was diagnosed with diabetes it was 1976 and I had to measure my glucose levels by peeing in a cup. In truth, I had to pee in a cup twice 30 minutes apart. The urine had to be fresh, not long stored in my bladder, for greater accuracy. So my bladder had to be emptied, and I had to learn to master the musculature of this organ so I could go again half an hour later. It was a lot to ask of a 10-year-old. But in time I did learn to pee on command, and to this day my bladder control remains remarkable.

The actual testing required a chemistry set of sorts—test tube, droppers, little tablets. The only thing missing was the lab coat. I carefully put exactly 5 drops of urine in the vial with one dropper and exactly 10 drops of water with a different dropper then added the tablet. It would fizz and foam like Alka-Seltzer until the tablet dissolved leaving a colored liquid that I compared to a chart that came with the set. Dark blue meant negative—no sugar. This was the color to hope for. Bright orange meant 5—a lot of sugar. This was the color to fear. In between those two extremes were various hues that corresponded with increasing values: trace, 2, 3, and 4. What did these numbers represent in terms of actual glucose measurements? I had no idea. To me, they only meant escalating levels of anxiety.

Eventually the test tubes and tablets were replaced by test strips that could be dipped before comparing colors, but the sample still had to be fresh. So I peed in a cup twice three times a day until I was 15 when the glucose meter made everything so much easier and far more accurate. At least, I told my parents I had peed in a cup twice three times a day. It didn’t take me long to realize that test results were simple to fabricate. And there was no such thing as an A1C to challenge whatever numbers I chose to write down. All this to say, things have come a long way in my nearly 50 years of living with diabetes.

A1C: a blood test that indicates the average blood sugar levels over the past three-month period

It was actually 1974 when my pediatrician, a kind and wise man who made me feel safe, referred my parents to a specialist, a stern and rigid man who terrified me. Despite my fear, I was fortunate. My endocrinologist was a recognized forerunner in the field of juvenile diabetes, what we now know as type 1. But even so, the leading minds knew very little.

My parents were initially told I had “borderline diabetes” that could be controlled with a strict diet. Now we know there was nothing borderline about it and the diet was a futile strategy. I was simply in the early stages of T1D onset when my immune system was just beginning to target my islet cells, my insulin producers, but it would take time to kill them all. Today, this stage is called “the honeymoon”. My honeymoon lasted nearly two years, a time frame that lulled my mother into complacency about my diet, something for which she harbored misplaced guilt for many years. In truth, there was nothing any of us could have done to control what was truly happening or to stop it.

In my opinion, “honeymoon” is a misnomer, a ruse. It’s a word that calls to mind celebration, rest, and relaxation. But during these two years, there was no rest for my body, no relaxing, and certainly nothing to celebrate. My immune system was waging a war and once the attack began, it was relentless and wouldn’t be stopped. Eventually I was left with a pancreas that couldn’t produce insulin, and I was told I had to pee in a cup twice three times a day and give myself insulin shots.

Insulin was discovered in 1921. It was the gift of life for diabetics who, until its discovery died of starvation because the only treatment was to deprive patients of nearly all food. And what food was consumed could not be used by the body because there was no insulin—the only means of transferring food into the body’s cells for fuel. It was a long death, a drawn-out disintegration of the body until it could function no more. The discovery of insulin and its life-saving power put an end to that. But understanding the nuances of this treatment took time.

In 1976, today’s biosynthetic insulins, continuous glucose monitors, and computerized insulin pumps were not even a concept. I was treated with swine insulin delivered in a set dose by a single injection every day. My isolated insulin dose was coupled with a hyper-controlled diet and an inflexible schedule. Every hour of my day had to be plotted and consistent from day to day to match the ways in which the insulin worked. But this was like trying to keep dry in a hurricane by holding a newspaper over your head. It was useless. What is more, I rebelled against the deprivation and the rigidness by living a secret life of forbidden foods when my parents weren’t looking. For many years food was a drug for me and I binged on the sugar I was forbidden. Lying about what I was eating became a way of life and, as I said, with no A1C, there was no evidence to reveal what was really going on. By my late teens I was incredibly unwell.

By comparison, when my daughter was diagnosed in 2006, she was taking as many as six shots a day because 30 years of research had revealed that taking insulin throughout the day and whenever food was eaten more closely mirrored how our bodies work. She was also testing her blood sugar with a finger prick four to five times a day so she could adjust her dosing to match her glucose levels and activities. This allowed for much looser food restrictions and far more freedom. The injections themselves were not painful, but the psychological implications were daunting. This was a lot to ask of a nine-year-old.

Today, the treatment methods and technology are the stuff of science fiction. Insulin pumps are minicomputers that deliver continuous micro-doses of insulin around the clock to keep up with the glucose a body produces on its own to survive. These are complemented by larger doses that are calculated for food. The pumps are digitally connected to small sensors worn on the body that continuously monitor glucose levels so the pumps can automatically increase and decrease insulin dosing in real time to mirror what is happening internally. Today, when I want to know my blood sugar, all I have to do is look at my pump screen. With these systems, diabetics can eat almost anything they want or not eat at all with far fewer and less severe swings in blood sugar.

What does all this mean for those of us living with diabetes? The most significant difference is quantifiable. A study done in 1975 found that people diagnosed with T1D before the age of 15 had a life expectancy 27 years less than those without the disease. Today, however, the life expectancy of diabetics and non-diabetics is about the same. And the rate of treatment advancements is growing exponentially. Looking back at the 50 or so years from the discovery of insulin in ‘21 to my diagnosis in ‘74, treatments changed very little. However, in the 50 or so years since, I went from peeing in a cup to simply looking at a pump monitor to know my blood sugar, and these kinds of changes have given me nearly three extra decades of life. Who can even imagine what the next 50 years will bring. A cure? Do we dare to hope? Maybe. Clearly, a lot can happen in 50 years.