November is Diabetes Awareness Month. People of all means and circumstance are embracing this opportunity to educate others and advocate for awareness.
I admit that I almost bailed out this time. Perhaps I have a touch of advocacy burnout. Perhaps I’m worn thin by the incessant demands of this disease and am grappling for any moment when it does not consume my thoughts and steer my actions. Haven’t I done my share of awareness-building?
But then I remember: Madeline does not get a break, really. I try hard to help her find a life in which T1D is not at the center of every moment. I try to tamp down its impacts so that she can lead a child’s life, dream big about her future, and imagine all the possibilities as being within her grasp. But, despite these efforts, this disease seeps into every moment of every minute of every hour of every day of every week of every year. Escape simply is not possible.
And because of this fact, I don’t get to bail out on advocacy. I have a responsibility to her, and to her siblings as well, to speak up about the impact of diabetes in our lives. This time, my contribution comes in the form of an account of a typical weekend day of diabetes management in Madeline’s life. Maybe this will help people to understand better an experience that they themselves are not living. Maybe it will help underscore the need to support the myriad of research efforts out there that are focusing on finding a cure. Maybe it will just build empathy.
In a typical 24-hour period…
1:00 a.m. Blood glucose check. 282. Correction bolus given (an insulin dose meant to bring down the BG level to within the target range).
2:30 a.m. Blood glucose check, to see if the correction bolus is working. 69. Wake up Madeline and have her chug 36g in juice and glucose tablets. This is way more carbs than I’d typically give, but she has a significant amount of insulin still in her bloodstream. And we’d both like to sleep. I also make a note to adjust the correction factor so that she’s not getting so much insulin the next time we have to correct a high BG.
2:50 a.m. Blood glucose check. 97.
4:30 a.m. Blood glucose check. I had a feeling that the carb bomb given at 2:30 might come back to haunt. 191. A little too high, but I’m waiting to correct this one until she wakes up.
7:15 a.m. Wake-up and blood glucose check. 176.
8:00 a.m. Breakfast gobbled for 39g. Bolus administered.
11 a.m. Madeline’s been increasingly whiny and grumpy this morning. Short-fused and quick to cry. I ask her if she feels alright, and she says no. Blood glucose check. 407. Waaa? I grill her for information: did she eat something without telling me? Does she have a stomach ache? Is she worried about something? No. No. No. She eats a small, low carb lunch and I bolus for 22g plus the BG high. The ketone check–a fun little exercise in getting pee on a stick, then comparing its colored tip with my colorblind eyeballs to a grid on the container, to determine if her body is now burning fat for energy (not a good thing)–is negative. She becomes one with the couch for a while and I’m left trying to discern why her BG is so high. I begin making secret plans for intervention.
12:30 p.m. Blood glucose check. 341. Now she’s starving and eats 50g. Bolus is given. Madeline’s very high BG levels are typically very insulin resistant, so for good measure I increase her basal rate (the amount of insulin she gets about every 3 minutes) by 30%. I inform her that if her BG is too high at the next check, her infusion set will need to be changed out. She stomps off in a fury: today is not “set change day” and the extra poke she might get feels assaultive to her.
2:30 p.m. Blood glucose check. 82. A “free” juice is given for the almost-low based on my hunch that she’s finally tanking after all that insulin. I cancel the temporary basal rate and make a note that 30% was probably a little too much of an increase.
3:30 p.m. Blood glucose check. 142. Snack, then bolus.
4:00 p.m. We head out for a bike ride. I have to wear a backpack because we cannot leave home without the D-kit and juice boxes. Normally I check Madeline’s BG before extended exercise like this, but she’s had enough pokes already today (10 so far) and I will be able to tell by her behavior if she’s going low.
4:45 p.m. Madeline suddenly fizzles out, dumps her bike by the roadside and sits down. BG check: 53. We sit for about 20 minutes, treating the low and getting her to the point where she feels like she can walk home. Her older sister and brother grow impatient with the wait, so I let them continue on home without us. When we get home, Madeline asks for some coconut cookies that we baked earlier. I give her two, then become distracted by dinner preparations.
6:35 p.m. Time for dinner. BG check: 268. Guess who forgot to give a bolus for those cookies? Madeline eats and boluses for the meal and the high.
8:10 p.m. BG check before bedtime: 271. UGH. What, has the insulin turned to water? While her BG won’t be in range so soon after a bolus, it should be dropping by now. So, I give a small correction bolus.
9:45 p.m. BG check: 64. That 8:10 bolus was a mistake. 30g of juice given. This would be way too many carbs under normal circumstances, but again, she has too much insulin circulating in her system.
10:05 p.m. BG check: 101. A little low for sleeping, but I’m banking on the likelihood that the level will keep rising due to all those carbs she just consumed.
11:15 p.m. BG check: 156. She and I might actually get some sleep tonight!
How many times did Madeline endure fingertip lancing to test blood glucose in this 24-hour period? And to accommodate those tests, how many times was her sleep or play interrupted? How often did the symptoms of diabetes interfere with her ability to interact in a pleasant manner with her family, to be physically active, and to sustain her usual activities? How often did I have to engage in problem-solving around treatment adjustments? How many times did the impact of T1D factor into the everyday ebb and flow of our family, overall?
Too many times. Too often. Much more than we want to admit. Much more than we want to accept.