Sugar Stalked!

About a year after I was diagnosed with T1D my endo asked if I was interested in getting a Continuous Glucose Monitor (CGM).  I couldn’t say “no” fast enough.  I’d read about CGMs and knew that they gave a glucose reading every 5 minutes.  That’s a new data point all day, every day, for a total of 288 daily reminders of T1D.  At that point I was manually checking my sugar by pricking my fingers about 10 times a day.  I was afraid that having more data available would turn my moderately obsessive compulsive behavior into a full blown disorder.  I had visions of sitting at my desk waiting for the next reading to pop up and I knew that was a bad place for me to go.  So I said no, my doctor moved on, and that was the end of the discussion.

Fast forward 9 months or so, and my T1 had continued to develop.  More highs and more lows, especially the kind of lows so severe they woke me up in the middle of the night and left me fumbling to find the glucose tabs I needed to get my sugar back to a safe place.  Over a few weeks the idea of a CGM started sneaking into my thoughts, and I started thinking personal safety won out over the possibility of an OCD diagnosis.

During that time my friend Holly and I attended the Type One Nation Summit in Cleveland and saw a presentation that included a discussion of CGMs and the “follow” feature.  I realized that not only could an alarm go off at my house when my sugar got too low, that same alarm could go off in other houses to make sure it would be next to impossible for me not to wake up the next time my sugar dropped to 50 at 4 AM.  I decided then that I'd bring up the topic at my next visit to the doctor.

And so, I’m now the proud owner of a Dexcom G5.  I’m wearing a transmitter stuck to my stomach with a tiny wire inserted just under my skin.  Sounds crazy, doesn’t it?  But this clunky looking gizmo is sending readings to my iPhone every 5 minutes.  I get glucose readings every 5 minutes, all day, every day, just like I’d feared last year.  And the reality is that it is fascinating.  In just under 2 weeks I’ve already seen the powerful impact that exercise has on lowering my sugar.  I’ve seen how quickly Chinese food can cause a major spike and how quickly it can go back to normal.  And I’ve seen the “beer curve” for the first time, where at a baseball game I watched my sugar go up from drinking a beer and then saw the insulin I took to cover that beer bring me right back down to where I was before.  Sure, I’m someone who likes to play with numbers.  But this is science and biology and fun all rolled into one amazing T1D nerd package.

And that safety piece?  Holly and her husband both downloaded the Dexcom Follow app on their phones and can see my glucose readings in real time.  The goal is to improve my safety and add peace of mind for all of us.  What’s really happening?  They may be a bit more compulsive than I am already!  I’m now being sugar stalked and within the first 2 days got a text that pointed out “you’ve been low all day.”  It’s funny to realize some of the things I’ve known all along, but that other people haven’t and couldn't have seen.  I know it's giving them a new perspective on the ups and downs that happen throughout the day with T1, but I also know it can make them worry when they can see the lows that they never knew about before the CGM.  For me it’s incredible to see what happens in the 2 hours after meals, the gap when I typically didn't test before.  And at times, I'll admit it's a bit of a compulsion to see where my sugar is.  Right now I'm checking my number way too often because I'm so curious.  Holly is too, I know.  We’re all adjusting, but that will take time.  I’ll probably ask another friend to download the app so I’m covered in 2 different houses, and I know she’ll go through the same adjustment period.  But in the end I absolutely love my CGM and I’m glad I finally got over my worries about having one.  I can’t wait until I’ve had it a bit longer and can start really analyzing my own data!


FYI...the chart below is the last 12 hours.  You can see I've gone from about 80 to 107 so far after dinner...

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?!