These days, I usually don’t show my glucose data online. When I first started Looping (about two and a half years ago), I regularly posted the flat CGM lines that amazed and surprised me. I also shared the not-flat lines that showed how hard my Loop app was working as temp basal rates changed almost every five minutes. The technology worked hard so I didn’t need to, and the results were astonishing to me. I shared them with disbelief. (And gratitude.)
I stopped doing that for a number of reasons. It did get boring, and I definitely recognise my privilege when I say that. I also acknowledge my privilege at being able to access the devices required for the technology to work. And there was the consideration that sharing these sorts of stats and data online inevitably lead to comparisons and competition. That was never my intention, but I certainly didn’t want to add to someone having a crappy diabetes day while I blabbed about how easy my day had been.
But today, I’m sharing this:
This was my previous 30-day time in range data from the Dexcom Clarity app on the day I arrived back home in Australia after returning from New York. (My range is set to 3.9mmol/l – 8.1mmol/l.) I’m not sharing it to show off or to boast. I don’t want congratulations or high fives. In fact, if anyone was to see this and pat me on the back, I would respond with the words: ‘I had very little do with it’.
I can’t really take credit for these numbers and would feel a fraud if anyone thought I worked hard to make this happen. Using an automated insulin delivery system full time means that I do so much less diabetes than ever before while yielding time-in-range data that I could once only dream of.
I want to share it, not to focus on the numbers (because it’s NEVER about the numbers!), but to explain what happens when diabetes tools get better and better, and what that means in reality to me.
Those thirty days included the following: End of year break up parties for work and other projects (four of those); ‘We-must-catch-up-before-the-end-of-the-year’ drinks with friends (dozens of those!); actual Xmas family celebrations (three of those over a day and a half– and I’m from an Italian family, so just think of the quantities of food consumed there). Oh, and then there were the three weeks away in NY with my family. Our holiday consisted of long-haul flights from Australia, frightful jet lag (there and back), a lot of food and drink indulgences, out-of-whack schedules, late nights, gallons of coffee, no routine, and more doughnuts than I should admit to consuming.
Add to that some diabetes bloopers of epic proportion that had the potential to completely and utterly railroad any best laid plans: insulin going bad, blocked infusion sets, sensors not lasting the distance, a Dex transmitter disaster.
And yet, despite all of that, my diabetes remained firmly in the background, chugging away, bothering me very little, with the end result being time in range of over eighty per cent.
This graph is only part of the story of why I so appreciate the technology that allowed me to have a carefree and relaxed month. Diabetes intruded so little into our holiday. I bolused from my iPhone or Apple watch, so diabetes devices were rarely even seen. Alarms were few and far between and easily silenced. I was rugged up in the NY cold, so no one even commented on the Dex on my upper arm. The few times I went low, a slug of juice or a few fruit pastilles were all it took, rather than needing to sit out for minutes or hours. Diabetes didn’t make me feel tired or overwhelmed, and my family didn’t need to adapt and adjust to accommodate it.
That time-in-range graph may be the physical evidence that can point to just how my diabetes behaved, but there is a lot more to it, namely, the lack of diabetes I needed to do!
As I spoke about this with Aaron, he reminded me of my well-worn comments about not waiting around for a diabetes cure. ‘You’ve always said that although you would love a cure, it’s the idea that diabetes is easier to manage that excites you. Ten years ago, when you spoke about what that looked like, you used to talk about diabetes intruding less and being less of a burden to your day. That is what you have now. And it is incredible.’
3 comments
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February 7, 2020 at 11:54 am
Min
That’s pure and simply amazing Renza!, but why why why cant we have access to such technology for those who have to no clue what looping actually is and who just wants to buy one off the shelf and plug it into my body and hit the go button? Why hasn’t this been commercialised to benefit the nightmare and exhausting existence of living with diabetes? My range is 84 percent out of range both high and low and a minute or 2 in normal range when it is plummeting or climbing either way. I chase my sugar levels all day and have done so for 50 years. Exhausting and depressing and give up worthy! yes! We need adequate tools to uphold a normal life that has an sense of well being privileged into our days…. every day because we are expected to work and play and contribute like everybody else but with huge hurdles and endless private hell time. I don’t want to just randomly hit a normal human being BSL, I want to experience a life with a normal BSL’s and see where that could possibly take me instead of just surviving and knowing exactly where I am heading.
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February 7, 2020 at 12:49 pm
Rick Phillips
Back in 1974, I imaged a cure would be an implantable artificial pancreas that checked our blood sugar and dosed insulin without human intervention. I imagined a device like an artificial heart.
Well 45 years later that seems like a strange idea for a cure. or,,
It is not all that far off. Today we have devices that closely measures our blood sugar and almost automatically doses our insulin. So how are things on my scale of original best this can be? Pretty damn far along.
I like where I am with diabetes on the original scale of cure wish. Sure we are not there yet. no internal pump int he US, no 100% self dosing, no completely automatic yet. But I feel like we are close. and close is pretty damn good right now.
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February 7, 2020 at 3:30 pm
Glenda Maddern
When do we hope Tandem T slim and Dexcom will have this facility available in Australia
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