An Excerpt from Islands and Insulin- The Final Installment
13 April 1996
La Jolla, CA
The week after the struggle on the bike, I came down with another cold. One bad enough to really knock me on my ass. I had lived in La Jolla for three years and I suppose I should have had a doctor down there, but I was never sick so I never bothered.
This cold however wasn’t leaving and I was frustrated with missing class just to sit on the couch and stare at the ceiling of our television-deprived living room. I had no problem missing class to surf or lay in the sun, but to miss class in order to do nothing was starting to wear on me.
My roommate Christina was going up to Orange County to check out a grad school close to my parents house, so I thought it might be a good idea to catch a ride with her and grab some antibiotics from my doc back home to kick this stupid infection. My mom scheduled an appointment for the afternoon so she could take me in after she finished teaching her classes.
We sat down in the small waiting room and waited.
After about forty-five minutes, I approached the receptionist desk.
“How long do you think it will be until I can see the doc?”
“What’s your name?”
“Umm. Let me see.” She flipped through her appointment book as a puzzled expression spread across her face. “It looks like we just brought a family of three back. They were actually in back of you.”
“Really? So how long is it going to be now?”
“Probably another thirty minutes?”
“Thanks.” Back to my uncomfortable waiting room chair.
When I finally did get to see the doctor, he was rushed and barely looked at me. He performed the usual checks for a cold, looked in my ears and nose, stuck a stick down my throat and persuaded me to say "Ahhhh." He concluded that with some antibiotics I would be fine. My mom then spoke up.
She turned on her assertive mode, listing off symptoms. Thirst, lethargy, weight loss. It was the first time I had heard of my weight loss. It turns out I had lost fifteen pounds over the last month without even noticing.
"I don't know how that's possible. I am eating all the time." I added.
“You need to run some tests. It’s not just a cold,” she said.
The doctor agreed to run a blood test to see if there was anything he was missing - mostly to assuage my mom and possibly cover his own butt by warding off a lawsuit. He said he’d call if anything showed up.
Christina came by late that night to pick me up for the long drive home. I took my first antibiotic and didn't give the doctor's visit another thought. I was feeling good enough to go to class the next morning. I even stayed awake through the whole thing. It was the first week of classes, so as was my custom, I tried to make a fresh start and show up to all of my classes for the whole week, a rarity for me at other times during the semester.
I thought it was a bit unusual when my dad called two days later. My mom, the chatty one, would usually call. My dad only called when things were serious. “We got your blood work back,” he said.
Based on my symptoms, the doctor suspected three diseases: diabetes, cancer or leukemia. My blood work proved it was diabetes. Given those three, I’d take diabetes every single day of the week. Please. No problem. Whatever I had to do, it would not be a problem. Not a single complaint would be heard.
I was a proud girl, never one to show my weaknesses, hiding every crack in the facade. I was invincible, or at least that was the side of me I was willing to let show through. And that’s the face I chose to put on when the news came. It was the only face I was willing to let myself own at that point.
It would take my parents a little over an hour to make the drive from Seal Beach down to La Jolla to pick me up and bring me back to the doctor. I wandered upstairs and packed a few clothes, my toothbrush and stuffed my biology books in my backpack.
My roommates would have started a cry-fest if I gave them a moment, and I was in no mood for tears. So, I walked over to the boys’ condo on the other side of our complex to kill time. I knew they would be good for a few laughs and boy was I right.
After about forty minutes, knowing my dad would probably be even more prompt than usual and not wanting to keep them waiting, I cruised back home and sat down on the couch waiting for my new life to begin.
The first doctor’s appointment was a blur. The only words I remember were, “You have diabetes. Go make an appointment with an endocrinologist.” Why he couldn't tell me this over the phone is beyond me.
We went straight from that appointment to one with Dr. Perley. His waiting room was full to the brim. And so once again we waited. I had no idea it would be the beginning of a lifetime of waiting hours on end to see doctors.
My definition of a good day: Wake up and put on a bathing suit and shorts. If you can make it through the day without having to put on shoes or a shirt, it has been a good day.
So when I first saw Dr. Perley late that night in his white orthopedic shoes, I wondered how long it had been since he had had a good day. He talked slowly with my parents and gave me the Intro to Diabetes lecture. He had me practice giving insulin injections to an orange and then he handed me my own kind of death sentence.
It was one of the only things that impacted me from that appointment. Maybe it was all the extra sugar circulating in my blood that was making me groggy or the whirlwind of appointments and information that come with a new diagnosis or maybe because the thought just shattered my concept of the world and my place in it.
He told me that now that I was a diabetic I could never walk barefoot again. Flip-flops were definitely out of the question. From the moment I got out of bed in the morning my bare feet were never to touch the ground. Gone was the slightly gritty feeling of the deck of a sailboat beneath my feet and the feeling of sand sifting through my toes. No more hopping from white line to white line in the parking lot in the middle of summer to avoid burning my feet.
My happy-go-lucky future was now strapped down and buried beneath my summertime nemesis, the dreaded shoe. I couldn’t even get away with going to my Plan B when society demanded some sort of footwear, the go-ahead, as Captain Jack calls them.
Lucky for me, I have a streak of rebellion running strong and wide. That one piece of advice I ignore. I ignore it just about every morning when I get up in the morning to feel the cold, always somewhat sandy, hardwood floor beneath my bed.
I ignore it before every surf session while making my way across the parking lot and later on the sand with all its hidden glass-shard land mines. And I ignore it every time I throw on a pair of heels when I go out with Tony. Heels were also outlawed by Doc Killjoy because they might hurt my feet. How a man could outlaw heels is beyond me. Weren’t they invented and propagated by man after man after man?
In this fight against diabetes you have to filter your advice carefully. You do your best and forget the rest. For me that was refusing to condemn my feet to the confining dark holes that we all call shoes.
After shattering my world and making me assault a piece of fruit with a hypodermic needle, Dr. Perley sent me home with the instructions to shoot up with three units of regular insulin and three units of NPH, or neutral protamine Hagedom, a long-acting insulin. It didn't matter how much or little I ate for dinner or how high my blood sugars were at dinner, I was to take three and three.
In the normal human body, the pancreas perfectly matches the amount of insulin it releases to the amount of food you have consumed. Diabetics try to do the same thing by reading food labels and estimating or measuring our food. We then run those numbers through a calculator in our brains or our insulin pumps and come up with a pretty good estimate of what we need to counter the food we eat.
I suppose Dr. Perley thought this far too complicated to tell me before I left for the night. Even if he didn't trust me enough with that new calculation, maybe he could have instructed me to eat a certain amount of food so that he could have done the math ahead of time and told me to eat a turkey sandwich and an apple, for example.
But instead he only told me to shoot up with three and three at dinner and then test before bed and call him with the results. He also gave me no indication that I should be taking more insulin if there was already too much sugar in my blood. Extra insulin is needed to tuck the sugar away into muscle cells.
Most diabetics develop a sliding scale for this calculation. For me it is an extra unit of insulin for every fifty points above one hundred. So, if I am one hundred fifty, that's one unit. Two hundred gives me two extra units. There was no allowance for either of these most basic diabetes management tools.
My parents thought it would be nice to go out for a little dinner, since we had all had a long day, and none of us had thought about eating through this whole process, one luxury I would not have again for a few years. We went out to the little Italian place near our house and sat to digest all of this new information.
Lasagna and a hot fudge sundae were on the menu, and then we went home and fumbled through my first blood glucose test on my own. My dad and I had figured out enough in that small amount of time with the doctor to realize 533 wasn't a good thing. I was only 423 earlier in the doctor's office and they seemed concerned about that.
My dad wrote it into my log and called Dr. Perley. He asked for my latest reading. My dad relayed the information and hung up. My mom asked, "What did he say?"
"He said he would meet us at the hospital in fifteen minutes.”