TMI: Why I Turned Off Dexcom Share

Last Friday I pushed a cart through one of those cavernous stores where you find discounted brand-name clothes and gourmet salsas and fancy towels with defects. There were a couple of things I needed that I knew would be there.

I’d spent the entire morning on the phone with my insurance company, mostly on hold, trying to sort out why I’d been charged hundreds of dollars in error for insulin pump supplies for my seven-year-old son, who has type 1 diabetes. All that time dealing with authorizations and member ID numbers and being transferred from one customer-service representative to the next had thrown a wrench in my plans: I’d needed to work a few hours then drive 45 minutes to the nearest city to buy groceries and other household necessities, then hit the drug store to get test strips and then pick up my kids. My family and I live in a rural place; we have to travel to supermarkets, drug stores and doctors.

I already knew I’d be late for the bus stop—a dirt road on the edge of town where I drop off and pick up my son and daughter each school day. (Remember what I said about rural place?) I was rushing, scratching things off my list that could wait until my next trip to civilization the following Friday, all the while digging in my purse to turn off the alarms on my iPhone. My son has a Dexcom Share continuous glucose monitor (cgm); the Dexcom app on my phone signaled that my son, that day on a field trip at a pumpkin patch near the Canadian border, was running high, well above 300. My son’s school nurse is phenomenal; she was with him so I knew he was in good hands.

I should mention that “Dex,” as I call him—my son prefers the name “Bossy”—is a diabetes management game-changer. We’ve had the cgm for two years now. It means less guessing and fewer finger sticks, allows us to dial in our son’s highs and lows, protects him from dangerous situations, and it lets my husband and me sleep more. The Dex Share app on my iPhone, however, came to us just six months ago. I’m amazed and grateful for this technology. My husband and I can see how our son’s BGs are trending while he’s at school or mid-soccer tournament or on a playdate. My husband and I are musicians and often play nighttime gigs; between songs I can check my phone and text the sitter if something seems off.

But minute-to-minute blood glucose awareness has its drawbacks. If you’re a wound-up worrier like me it can cause a lot of anxiety: Sometimes when my son’s alarms sound, I feel my heart race, I clench my teeth, I hold my breath. (I know, more yoga, right? I’m working on it.)

Our very wise diabetes nurse/educator—who also has type 1 diabetes—and I recently discussed the virtues of devices like Dex, about how grateful we are for breakthroughs in technology that help keep people with type 1 diabetes safe and healthy. Still, she cautioned, sometimes we can’t handle knowing so much—we’re only human, after all.

Back at the store, as I pushed my cart through the congested aisles, Dex beeping from my bag, I bumped into someone’s cart. I’m sorry, I said. “You’re fine,” she answered. I made my way through more aisles, accidentally cutting off another shopper. “I’m so sorry,” I told her. “You’re fine,” she answered. And then at check out I backed up and bumped another cart. One more apology, another “You’re fine.” (Apparently “You’re fine” has replaced “No problem” and “That’s OK.”)

I didn’t feel fine.

I climbed into my car and sped back home, to the dirt road where the bus was idling, the other kids already picked up, mine waiting patiently. My daughter, a kindergartner, hopped off the bus, and my son, a second-grader, dragged down the steps, not himself at all. He’d had a runny nose the night before; it was clear he was getting sicker, probably why his BGs had been so high all day. The bus driver reminded him to grab his pumpkin, which had rolled to the front of the bus.

In the car my daughter chirped on about her day; my son coughed all the way home. After hanging up coats and putting away hats and mittens, I dug in my son’s backpack for his diabetes bag, an over-the shoulder satchel that holds his Dex receiver, iPhone, meter and other supplies, and a notebook that his nurse and I use to communicate with each other. Nowhere. My son burst into tears. He’d left it on the bus, he said. Which meant another forty minutes, round trip, back to school to retrieve it, all the while Dex shouting his no information alarm.

That gave me time to think.

We chose this life—the rural part, anyway. We wake to mountains filling the sky, the whoosh of a river in our front yard; endless hikes, climbs, skis and paddles just beyond our front door. For all of that there are sacrifices.

But diabetes also means sacrifices, especially for my little boy. It’s hard enough for him to remember things like mittens and homework, never mind constantly checking his BGs; lugging devices and juice; waiting for a carb count or bolus so he can eat; tucking in his pump’s tubing; or sitting gingerly on days when his pump set sits low on his bottom (there’s only so much real estate on a lean kid like him).

I realized I’d allowed the Dex Share alarms to become part of our family’s soundtrack. And did I really need them to be? Did my son need even more reminders that he has diabetes? Or that something wasn’t perfect?

For the first time I acknowledged what our diabetes educator had tried to tell me: Dex was critical at night and in other situations, no doubt. Those alarms had, and will continue to, keep my son safe. But his A1C is good and he has regular checkups during which we look at the data and make adjustments to bolus and basal ratios. So do we really need to know every post-meal spike or every time there’s a lapse in data? Dex Share meant that—if our entire family was home and our son went high or low—two cell phones and the Dex receiver would sound their alarms, sparking red alerts from every room. If that was contributing to my anxiety, what was it doing to my seven-year-old son?

I needed to do more to release the burden. I’d start, as my diabetes educator recommended, by programming higher settings for highs. I’d turn off the no data alarm. I’d rely less on Dex when my son was with me during waking hours. It was okay to sometimes turn it off. It would be better for both of us.

And, of course, I wouldn’t reprimand him for forgetting his diabetes bag on the bus.

When I got home I hugged my son. “We’re only human,” I told him. “We’re fine.”

And I meant it.

Annie Stoltie

Annie Stoltie is a mom to two children—one of whom was diagnosed with type 1 diabetes at age 4—editor of Adirondack Life magazine and a contributing writer to publications that include Slate.com, the New York Times, Newsweek, Modern Farmer and Good Housekeeping Magazines. She’s the author of the guidebook The Adirondacks (W.W. Norton, 2012) and is currently the Writer-in-Residence at the State University of New York at Potsdam. She lives in Jay, New York.