Wednesday, July 6, 2016

Doesn't Everybody Love Pink?

I’ve seen it written a couple of times that Type 1 diabetes (T1D) is the only disease where the patient manages their own care.  That’s no joke when taking too much or too little insulin can quickly get you a trip to the hospital.  Given that, you’d think there’d be a lot of training provided at diagnosis.  I don’t know what that day looks like for other adults, though I’ve read numerous stories about childhood diagnoses that involve multi-day hospital stays to train families on how to dose insulin, what affects blood sugar, what sources of support are available, etc.  My diagnosis was less comprehensive to say the least, and turned out to be even more frustrating than I realized in the moment.

After my endocrinologist dropped the Type 1 bombshell in my lap, I had no idea what was really going on.  Honestly, I couldn’t have told you how to give a shot of insulin without reading the directions the next day.  But there are those moments that remain crystal clear in memory.  After hearing I had T1D the appointment took another horrifying turn when my doctor went to get me my shiny new glucose meter.  When he returned to the exam room he proudly shared that he’d picked a pink one for me.  Pink?  I was 42 years old.  Until very recently, I haven’t worn or owned anything pink since my mom stopped picking out my clothes.  And since pink isn’t really her style either, I doubt there was much of it 40 years ago.  But to him it was only natural that any woman would choose a pink meter.  As if I wasn’t stressed out enough, I knew in that moment that I hated him.

The instructions my new doctor gave me on how to handle my terrifying disease were as simple as his ridiculous assumption that all women would jump for a pink accessory.  He showed me how to check my sugar and gave me my first insulin shot.  I was given 2 types of insulin to take home:  one to administer once a day, and one to administer any time I consumed carbohydrates or had a high glucose reading.  The whole situation was explained as a simple math problem.  Eat X, inject Y.  Check your sugar 3 times a day…if the number is above X, inject Y.  Once I got over the shock that I was now insulin dependent, I figured I could handle this.  It sounds easy, right?  I’ve spent my career analyzing data, I should be able to do math a couple of times a day.  No problem.

What my doctor didn’t tell me is that Type 1 is anything but simple and often defies the laws of math and reason.  I can eat the exact same foods 2 days in a row, but the first day my sugar will run around 100 and the second day around 200.  Why?  I’ll never know.  That’s the fun and frustration of T1D.  Stress, fatigue, rotten luck, Venus is in retrograde…they could all be factors.  Maybe not the last one, but I wouldn’t bet on it!  Sometimes there just aren’t answers, because we’re talking about the highly complex human body.  I’m trying to play the role of my pancreas, but I don’t have all the information that it has.  I know what I ate and how active I’ve been.  What I don’t know is anything about what’s going on in my body at that moment.  So in a way, I’m aiming at a moving and invisible target most of the time.

The closest I can come to finding that target is to know my current blood sugar.  The instructions my doctor gave me to test 3 times a day?  I immediately realized that made no sense when internet research showed me other T1s checking before every meal, 2 hours after every meal, first thing in the morning, last thing at night, and before/after exercise.  That’s a lot more than 3 tests, so he’d given me directions to walk through most of the day in the dark.  Without knowing where I am, I don’t know where I need to go and certainly can’t plot a path to get there.

It turns out that neither my endocrinologist nor the Certified Diabetes Educator (CDE) in his office taught me much of anything about T1D.  I’ve learned how to manage my disease and everything it brings on the Internet.  When something new comes up like my recent research into getting a continuous glucose monitor, I go back to T1D apps, message boards, Facebook pages and youtube channels for help.  I guess maybe since I have a disease where I’m in charge of my treatment, it follows that it’s other patients and not my doctor who taught me how to live with T1D.  That said, it scares me that my experience may be the norm.  I haven’t changed doctors, because he consistently writes the prescriptions I want in the quantities I ask for and I can’t quite motivate myself to make a change yet.  But I think of that pink glucose meter every time I see him.  Pink?!