We have arrived at a fork in the road on the T1D journey. Constant Glucose Monitoring. The Dexcom G4 was inserted a mere 48 hours ago and I feel like its diagnosis week, all over again.
Hannah was diagnosed with Type 1 two weeks before her sixteenth birthday, seventeen months ago. I had ignored some pretty big symptoms that I had justified as being attributed to her training for an upcoming Warrior Dash. Her story is remarkable...to me. I expect everyone thinks their own story is remarkable. But suffice it to say we found out she had diabetes when she was admitted to critical care in an advanced stage of diabetic ketoacidosis. Our learning curve was a vertical line. We tackled T1D like bosses and thought we could control it by sheer force of will---hers to force her blood glucose to obey her stringent discipline. Mine to aggressively research and parent and understand. We refused to acknowledge the concept of a "honeymoon stage" and were sure we were straight A T1D patient and mama.
Yeah.
Because when the bottom drops out and you're terrified, sometimes a little control feels like you won't completely lose it.
It has been a pretty good first year and a half, as far as life-altering diagnoses go. She has maintained good control, a pretty solid a1C and a keen understanding of carb counting and insulin dosing. She is unique for a teenager because she adamantly refuses the use of a pump. I get it. I support her. It is her body, her disease, her sanity, her need for autonomy and her choice to give up to six injections a day instead of being constantly tethered to an external insulin pump. The way I see it, is its like choosing between a snake or a porcupine. Neither is something you really want, so if the choice is forced on you, you go with whatever makes you less miserable.
All cynicism aside, Hannah isn't miserable. She is amazing and fierce and strong and brave and is determined to deal with T1D on her own terms. I admire that in her. If she weren't managing this beast, we would talk about a pump. If I thought she'd have significantly better control using a pump, we'd talk. If there comes a time that it seems like the pens aren't working for her, we will revisit the subject. But for now, I get it.
Which brings me to the point of this post. Constant Glucose Monitoring. What a wonderful, terrible thing.
Equivalent to 280 fingerpricks in a 24 hour period, the CGM is giving us a ton of information. For a couple of perfectionistic, obsessive, over-achieving women, that much information is akin to short-circuiting the brain. It is overwhelming to take in the graph of highs and lows as we initially get started using this process.
The rock solid data we were relying on from four to five finger sticks daily was a liar....in some ways. Like only having 5 points on an intricate connect-the-dots design. There were so many missing puzzle pieces.
She has worn the monitor for two days. The insertion was a triumph in and of itself, and probably fodder for another post at some point. The calibration was nerve-wracking, as there was a moment or two of sheer panic after a low seemingly didn't respond. The multiple finger pricks each day that are supposed to be less frequent are actually amplified right now, as we calibrate and double check. There are missing puzzle pieces that will require tweaking for the first time in a long time to try to mitigate some problems in the night.
There is more frustration and fear and overwhelm than victory today. But that is today and tomorrow is another day.
Knowledge is power.
Hopefully the knowledge she gains from the steady stream of information about what is going on in her cells at any given time will empower her to refine her regimen. I'm hoping she gets a silver lining out of this one....like an indicator that frozen yogurt makes her settle in at a golden 115 and never fluctuate, because I think she deserves a win.
Either way, its a new tool in the arsenal for fighting the invisible monster at the door. I'm praying that it allows her more freedom than bondage. That remains to be seen, but for now, I will trust that it will.
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