Four years have now passed since my diagnosis as a Type 1 diabetic (with a 1600 blood sugar) back in January of 2008. And what a journey it's been. I've spent two of those four years on an insulin pump which is under warranty for just three years. It is my goal to be off the insulin pump before that warranty expires... Here goes nothing!!
In the meantime, I thought I might entertain you with another trip down memory lane. Here is the long-awaited second half of my diagnosis story. [Click here to read Part One.] Please remember that my below description of events is from an online letter originally composed on Monday, February 18, 2008 and no longer reflects my current thinking where dietary knowledge and practice are concerned.
I remember feeling it when I was leaving the hospital, just after my conversation with the burly, soft-spoken, young Latino guy steering my wheelchair. I asked him about his job in transportation and learned he spends his entire day moving things. If something needed to get from one part of the hospital to another, he transported it - heavy boxes, medication, food, sick people... even bodies. And it hit me: I could have been one of those bodies.
Suddenly, I was very grateful to be in that wheelchair. But now, here I was, being separated from the institution that had kept me alive with insulin and food (which wasn't bad, actually, once the taste of the ice chips subsided), and I had little clue anymore how to keep myself alive. Until now, I'd never had to *think* about it.
My mom and I were headed immediately to see my endocrinologist, and it was coming on lunch time. A few hours had passed already since the hospital had served me breakfast, and my energy was low. I hadn't showered in 5 days, and my attempts to sleep in the hospital had been thwarted at almost every turn by the limited mobility afforded me in my hospital bed, a few IV-tethered restroom trips (thanks to a number of cool fluids still being pumped vigorously into me), and multiple incessant and obnoxious alarms signaling the nurse that it was time for a new bag of... whatever.
Now in the car, I felt claustrophobic. I rolled down the window in search of fresh air. Our traffic stops were mostly rough and uncomfortable because my mom wasn't used to driving the rental car; so by the time we arrived at the doctor's office, my head was heavy and throbbing. I was continually overcome by the sense of my own helplessness. I felt more dependent on others at that moment than ever in my Life - more dependent even than when I was being carried, unconscious, into the ER. At least, on that day, I was too far gone for *feeling* much of anything.
This day, however, I was acutely aware of my need.
I felt vulnerable - like a child somehow swept up in a Life-and-death game of Tag. And now, between hospitals, I was caught between "bases" while running from a relentless pursuer I couldn't see coming. Timing was critical. I just didn't know why. And in my ignorance, I felt afraid for my Life... and, though my Mom was right there with me, very, utterly, trapped and alone.
Once inside the doctor's office, we were seated in a small room with a big view. The dietician introduced herself as the doctor's right hand assistant, and then the doctor appeared. It was easy to see they were both very knowledgeable people, who understood my new state of dependence and desperation. They threw around the phrase "new diabetic" quite a bit. From that, and the tidbits I'd picked up from the hospital staff, I gathered I was embarking on a major lifestyle change.
It was easy to see, too, that they'd been talking Diabetes all day long, every day for several years. They fired so many new terms and concepts at me, I couldn't help but feel more and more overwhelmed by every word.
My head was killing me. My stomach was growling. I was much too thin. Tears began to form. Could I die just sitting there in the office? "I've already survived the worst of it," I kept saying to myself.
I took notes, and tried feverishly to wrap my brain around all the doctor and dietician were saying. But I couldn't keep my eyes dry. They seemed to rise and float more freely in their sockets with every minute, as the weight and gravity of my situation finally began to sink in.
"You looked like death that day," the dietician later told me.
"You had a look of sheer terror," my Mom remembered. And she was right.
Before she had arrived in town, I didn't know just how much I was going to need her. In fact, at one point in my altered-sugar state (probably high still on those crystal-kaleidescope visions I had every time I closed my eyes), I told her I was fine and that flying all the way from Oklahoma to California to come see me in the aftermath was a silly idea.
But I'm VERY glad she rejected my advice. She was a tremendous help and comfort, from the moment I saw her. She listened avidly, with me, to the many explanations and mathematical formulas the doctor and dietician threw at us. She helped me remember things I didn't write down, and she asked questions I wouldn't have thought to ask myself. I was very weak and nearly useless physically, but she folded and hung my laundry, washed my dishes and carried my groceries. She endured my frustration and tears (and other general moodiness), especially when trying to get the blood sugar meter to work for the first time. I wanted to smash it against the wall, kick and cry and scream, but she helped hold me together.
Perhaps most importantly, she was simply... here. She slept beside me for a week, at a time when I was frightened - at my core - to sleep, eat, walk or breathe (laboriously, at best) alone. This was too much for one person to manage.
But managing it, I am. What I wake up to each morning, since that unforgettable trip to the ER (the bits between unconsciousness that I can remember anyway) exactly one month ago, is a series of mathematical equations, and, in my case, guesswork at scrutinous meal-planning, for which I - a journalism graduate - never bargained.
I start with a protein, choose a couple servings of vegetables, then count carbs into carb servings. As it happens, I may have all the protein and vegetables I can healthily stomach, but the number of insulin units I inject before eating depends on how many carb servings I plan to eat.
Also, I have two kinds of insulin; one is long-acting, and the other is short-acting. I take the long-acting insulin before bed every night, and it stays in my system for 24 hours. I take the short-acting before each meal, and it wears off after about 3-4 hours. So I'm doing lots of math and lots of preparation and [as well as I can] prediction. I'm determined, though, to fit some spontaneity into my schedule somewhere.
I test my blood sugar a minimum of 7 times a day - when I wake up, before and after every meal, anytime I feel weird, and then before I go to bed. Actually, I've been testing it even more frequently than that, simply because my body's still searching for some consistency, and until it finds it, I want to know how certain foods and activities affect me.
I’m beginning to feel like a veritable pin cushion and am fast forming callouses on my fingers - I’m sorry to say - *not* because of guitar playing, but because of the constant trade from alcohol to needle and back again.
It's good that I test so often, though, as my numbers still jump around quite a bit. It's difficult to explain the feeling of a blood-sugar high or low to someone who's never experienced it. It’s more than just feeling light-headed, dizzy, sleepy or shaky. All I can liken it to is a feeling I first had when I was in grade school, which as far as I know, was not diabetes-related whatsoever.
Our class had taken its annual field trip to the Omniplex at the Kirkpatrick Center in Oklahoma City, where my friends and I started chasing each other through the mirror maze. I don't know exactly what was happening chemically, but I remember a profound warm and floating feeling, as though I were outside or over my own body. It was surreal then, and still is now, when I try to make myself believe, "This is actually happening... to me."
People keep telling me they're proud of me, how strong I must be, that they're impressed with how positive I've been about the whole thing and amazed I can make jokes about it, that I seem to have more energy than I've had in months. The doctors are very happy with my progress and how well I've followed instruction and suggestion. They tell me I'm their star patient, that I'm the kind of patient that makes them feel they're doing something right and good for people. They also say they fully expect me to experiment some; they say the smarter a person is, the more experimental she'll be... We shall see.
Others ask me how it's changed my Life. Make no mistake, my friends, that this last month has been difficult. It's true I do feel more energetic than I have in months, but certain other things still daunt me. My fingers are beginning to hurt from all the pricking, and the injections are sometimes painful. I think more about food than I ever have, and I still feel strange sometimes without warning. Despite the deliberate downsizing and simplifying I've done in my Life over the past couple years, I suddenly take up more space again - with packed lunches, medical supplies, etc. Hell, I'm even taking up more space in blogs lately.
When will I feel normal again? Is it even possible? Do I really want to feel normal? Was normal really better? Somewhere, amidst all the questions and confusion and emotion, I began to take comfort in some of the smaller pleasures I'm discovering along this new path. One of those is breakfast. It's a bit silly, I know (and I can only speculate as to why), but breakfast has quickly become my favorite meal of the day. Perhaps it's because it's easy to make, or because it changes little from day to day, or because it rarely leaves me wanting more - not even chocolate (though I have been known to slather some Nutella onto an English muffin at times).
Or perhaps it's my favorite meal because it's not complicated, at a time in my Life when so many other things seem to be. With so much on my plate right now both literally and figuratively, and with so many people telling me what I should and shouldn't eat (some whose opinions are neither correct nor welcome), the changes in my diet are mostly substantial improvements. Put simply, I'm eating more balanced meals.
Yes, for now, I may be eating considerably more food to gain some of my lost weight back, but it's better food.. It's like those cereal commercials I saw during cartoons when I was a kid. Once the animated spokesbird or spokestiger had given his dry cereal endorsement, we all were reminded (with visual presentation) the cereal was "part of this complete breakfast."
Twenty years and a near-death experience later, I'm actually enjoying my own more complete breakfast every morning. I look forward to it, and the distance each new morning puts between me and the terror and tears I first felt when leaving the hospital... Not unlike those proverbial spoonfuls of sugar - err, Splenda.