48 Hours with Type 1

Since November is National Diabetes Awareness Month in the U.S., there are all sorts of ways that people find to try to show the magnitude and impact of Type 1.  For example, last year I saw several pictures of pumpkins painted blue for diabetes awareness, with a month's worth of syringes sticking out of the pumpkins.  This year I saw an idea from the mom of a T1 kid that really struck me:  she asked her friends and family to volunteer to get a text from her for one day, every time she did anything diabetes related.  My first thought was "what a great idea," promptly followed by my second thought, "there is absolutely no way."  I wouldn't do that to anyone, but I realized I could approximate it by tracking all of my T1 moves and decisions through an entire day.

I deliberately chose a "normal" day, where I went to work as usual and ate only the foods that I cooked myself and eat regularly.  Since T1 isn't predictable, the day I picked was wildly out of control, largely due to a bad CGM sensor.  To give you comparison on how insane Monday was, I tracked a second day that I hadn't planned.  This is 2 days in the life of my Type 1.  To the people I might have asked to receive those texts all day...you're welcome!

Monday, 11/28:

• 4:02 AM:  High alarm showing 157.  Finger poke showed 185, and I gave a 5 unit insulin dose.
• 5:41 AM:  Low alarm showing 58.  Finger poke 82, so I recalibrated in the Dexcom app to correct the reading.
• 5:56 AM:  Low alarm of 56.  Based on the alarm 15 minutes earlier I did something I've never done before:  I closed the Dexcom app so I could go back to sleep, and took off my Pebble watch so I could avoid the vibrations telling me there wasn't a Dex signal.
• 6:50 AM:  Wake up and reopen the Dex app.  Finger poke showed 54, so I ate 2 glucose tabs to correct.
• 6:58 AM:  Respond to check in text from first line of defense Dex-watching friend.
• 7:16 AM:  Respond to check in text from second line of defense Dex-watching friend.  Dex shows sugar is 69 and climbing.
• 7:46 AM:  Pack D supplies in purse and check watch to see 97 before leaving the house.
• 8:26 AM;  Unpack D into my desk.  Finger poke shows 118 vs. CGM 10.  Recalibrate Dexcom, give 1 unit insulin to correct and 2 for breakfast.
• 8:50 AM:  Log breakfast in MySugr app.
• 10:42 AM:  Check Dex trend, currently 100.
• 11:16 AM:  Watch shows 122, finger poke 159.  Recalibrate again and take 3 units.
• 12:02 PM:  Dex has 125, finger poke is 112.  No recalibration, dose 3 units for lunch...ugly bleeder for this one!
• 12:33 PM:  Log lunch in the MySugr app.
• 1:46 PM:  Dexcom shows 104.  No finger poke.
• 1:59 PM:  Before leaving my building to drive to a presentation in another building, Dexcom shows 104, finger pokes are 86 and 91.  Recalibrate to be safe before long meeting.
• 4:56 PM:  Unpack purse at home and move insulin back to the fridge.  Dex shows 66, finger pokes are 86 and 82.  Recalibrate.
• 5:10 PM:  Insert new Dexcom sensor replacing 8 day old sensor gone bad.
• 7:12 PM:  Calibrate new sensor with tests of 123 and 126.  Dose 2 units correction and 3 to cover dinner.
• 7:29 PM:  Log dinner in MySugr app (pork rind breaded chicken tenders!).
• 8:46 PM:  Urgent low glucose alarm 54, finger pokes 83 and 76.  Recalibrate.
• 9:21 PM:  Urgent low glucose alarm 51, finger pokes 72 and 75.  Recalibrate.
• 9:25 PM:  Give nightly basal dose of Toujeo.
• 9:55 PM:  Urgent low glucose alarm of 49, finger shows 80.  Recalibrate.
• 10:57 PM:  Dexcom shows 121 and rising, finger poke is 91.  Recalibrate.
• 11:30 PM:  Admit surrender on new sensor and replace with a second new sensor.
• 11:40 PM:  Finger poke is 112, dose 1 unit before bed.

Tuesday, 11/29:

• 2:33 AM:  Calibrate new Dexcom sensor with results of 95 and 98.
• 6:08 AM:  Dexcom shows 206, finger poke is 118.  Recalibrate and dose 1 unit.
• 7:00 AM:  Pack D gear for work.
• 7:33 AM:  CGM shows 106, finger poke 110.  Dose 2 units for breakfast and 1 correction.
• 7:51 AM:  Log breakfast in MySugr.
• 9:20 AM:  Dex shows 93.
• 9:54 AM:  Dex is 89, finger poke 91 before heading into a 2 hour meeting.  Glucose tabs into my pocket.
• 12:11 PM:  Dex is 90, finger poke 89.  Dose 3 units for lunch.
• 12:30 PM:  Log lunch in MySugr.
• 3:01 PM:  Phone died during 2:00 meeting showing 119.  Finger poke 119, dose 1 unit.
• 3:15 PM:  Afternoon snack, log in MySugr.
• 4:40 PM:  Check before yard work shows 73, eat 3 peanut butter M&Ms to prevent a sugar drop.
• 6:31 PM:  Dex requests 12 hour calibration.  CGM 108, finger poke 130.  Dose 2 units.
• 6:55 PM:  Dose 3 units before dinner.
• 7:14 PM:  Log dinner in MySugr.
• 8:15 PM:  Nightly basal dose of Toujeo.
• 9:06 PM:  glance at watch, shows 104.  Recalibrate after finger poke of 94.
• 11:22 PM:  Finger poke 96, Dex 93 before bed.

That's a rough snapshot of what T1 looked like for me over 48 hours.  I'll admit that I check my sugar either on my wrist or on my phone a ton, but I didn't write it down most of the time because it felt ridiculous.  I ate the same meals both days, but you can see I had different results in terms of insulin needs and glucose readings, plus I checked my sugar with finger pokes far more times on Monday due to maddening technology failures.  This is what makes T1 so frustrating at times...same behavior, different result.  Even on a much calmer day like Tuesday, taking care of things is never far from my mind.

FYI:  when I check my watch, I'm still checking the Dexcom.  The sensor on my arm transmits to my phone and that transmits to the watch.  It's just another way to see where I am and is far more subtle than checking my phone.  Every time I do a finger poke, take insulin, or eat anything...I log that activity in an app called MySugr so I have history available on how many units I took for different meals and what happened after that meal.  Data!

The picture is what I use to insert a new Dex sensor.  I accidentally set this one off one day making it useless as anything other than an example.  I'd never seen the needle itself before and didn't realize it was so long.

More of the T1D You Don't See

To go along with pictures I posted to Facebook recently for JDRF’s #T1DYouDontSee campaign, I put together a list of some of the other things that most people don’t see about Type 1 Diabetes.  I have little doubt this list is incomplete but it’s not bad.  And so, here are my things about T1 that most people don’t see: 

• Waking up in the middle of the night sweating and shaking from low blood sugar, wondering how bad things are and how long you’ll be up this time.
•  Finger pokes that turn into geysers and the blood spatter evidence of an assault they leave behind.  Evidence on my clothes, on my furniture, and one time…somewhere in the Planet Fitness locker room.  I really couldn’t figure out where my blood went!
• Stares from curious people watching sugar checks and insulin injections who are nosy enough to watch but not comfortable enough to ask.
• Math followed by more math.  What is my blood sugar, what and when did I eat last, how much insulin is already working in my blood stream, what am I about to eat, how many carbs am I eating, how much protein am I eating, what time am I going to the gym, where do I want my blood sugar to be in an hour, 2 hours, 3 hours, how much insulin do I need to take to try to get me there?
• Spending 3 to 4 hours every weekend cooking because life is easier when you know exactly what went into every meal.
• Wondering where the chef in a restaurant hid the sugar in dinner that led to a 250 BG.  Especially when all you ate was a plate of meat.
• The absolute horror when your doctor suggests he’d like your sugar to be higher on average, because he’d feel like you’re safer that way.  No, no, no.
• The joy of feeling like you pulled “it” off…whether “it” is a new best A1c, a new low carb recipe, dosing well for Chinese food, or a precise recovery from an unexpected high or low.
• How amazing it is to have people that love you enough to accept the 2 AM CGM alarms that keep you safe…even when sometimes those alarms are false.

What you don’t see is how much time, thought and energy go into trying to not just to stay alive, but to live well.  T1D has become my way of life, but that doesn’t mean it’s the life I’d choose.  We need a cure.