When My CGM Fell Off, I Didn’t Want to Put it Back On

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-Nicole Rioles/GluNicoleQI

A personal story of detaching from diabetes devices by the T1D Exchange’s Director of Quality Care and Clinical Innovation.

Recently, I took a diabetes vacation – I began to cut back on blood glucose micromanagement in my life. This wasn’t planned – it’s just that after more than 20 years, I needed a break.

Type 1 diabetes is always on my mind, even more so because it’s also my day job. As the Director of Quality Care & Clinical Innovation at the T1D Exchange, I work with clinics around the country to help them improve health outcomes for people with type 1 diabetes, so it’s hard not to think about how to improve my own blood glucose management all the time.

One Saturday, I had been hiking for hours in the hot, humid woods, with layers of bug spray and sunblock caked on my skin, and I came home to a well-deserved shower. By luck and happenstance, I found myself totally naked of devices – my Omnipod patch pump had expired and my Dexcom CGM fell off after 12 days of summer humidity and abuse. I could have fixed all this in short order, but it felt nice to be untethered. I felt even less motivation to put my CGM back on because at the time I had been fighting with my insurance to get coverage for the G6 transmitter.

After more than 15 years of a pump and 13 years, off an on, with a CGM, I needed time off. As I sat with that decision, I realized my yearning to be device free was about more than skin real estate. It also meant freedom from data and prompts and warnings and alarms and excessive checking.

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During my last two endocrine visits, my healthcare providers had marveled at my micro-, micro-management of diabetes. I bolused 8 to 14 times a day – .05 units here and 1.15 units there. Suspending basal rates four to five times a day and overriding current basal rates other times added up to multiple adjustments every hour of every day. As a new nurse practitioner held the plot lines of my readings in her hands, they looked like a dense galaxy with hundreds of data points plotting my steps and missteps that hovered somewhere close to that elusive time-in-range zone. I asked her what she thought

“It’s great…if you can do it,” she said.

It was then that I realized how exhausted I was.

I took my second device-free shower and it felt great. After getting dressed, I slathered on sunblock and didn’t worry about hitting the device zones and grabbed a bag and didn’t worry about bumping into the pod zone.

If I was to plot my retreat from micro-management, I knew I needed different tools to do it – the most important being long-acting insulin. I hadn’t been prescribed a long-acting insulin since George Bush, the Younger, held office. Suddenly, on a weekend night after waking up twice in the night to take Humalog, I was desperate for it.

Sunday morning, I phoned my clinic’s on-call doctor and explained that I needed long-acting insulin. She quietly, but audibly, sighed. “Can’t this wait until the office is open and you can talk to your doctor about this?”

She must have heard the brittleness in my voice, though, because she soon acquiesced. She asked me to pick up ketone strips to stay safe and said that she would call in the insulin script. I was just a pharmacy trip away from basal and bolus injectable insulin therapy.

It didn’t turn out to be so easy. Instead, I spent three hours in the pharmacy and had to call the clinic twice because of mix-ups in my supplies. The ordeal was made that much harder because of the disorientation of a low in the middle of conversations with the clinic and the pharmacist. All told, it took five hours for me to finally settle in at home after having taken my first glargine dose in over a decade.

Some vacation. I could have just slapped on an Omnipod and gone to the beach. I could have visited my friend on bedrest or my mom with vascular dementia and felt good about the day. Instead, I spent the whole time thinking about diabetes.

I was aware that even this flawed vacation was out of reach for many. Many people never have the chance to choose between multiple daily injections and devices, short-acting versus long-acting because cost makes such decisions moot. I knew I was in a place of privilege in being able to decide what therapy worked best for me.

In no way am I endorsing one method of blood glucose management over another. I don’t even know which will be easier for me in the long run, and I am not sure if I ever will, but I do feel lighter and happier, being able to make a switch and not stay trapped in a repetitive pattern of one strict plan.

The grass just isn’t greener no matter how you look at it. It’s not easy to manage the “noise” of constant data streams when you are juggling multiple devices. It’s not easy when your insurance company and endocrinologist’s office force you to make 15 phone calls to advocate for your right to have a sensor. It’s not easy when your co-pay for your medical supplies costs more than a week’s worth of groceries. It’s not easy when you have to prick you finger 10 times a day. It’s not easy to inject insulin for a bolus by needle or pen, day after day. It’s not easy to tolerate an old pump site after pushing 150 units of insulin under your skin, within a very tiny space.

Nothing is easy, but that doesn’t mean change isn’t sometimes necessary.

If I had the G6 transmitter tomorrow, would I put it on? I don’t know. I like the calm quiet that I am experiencing right now, with no alarms, but I also have experienced multiple severe hypos that have ended in ambulance rides, hospital observations and emergency department visits. I appreciate all of the technology that I have access to and I see the closed loop systems could be the biggest game changer for diabetes management since the discovery of insulin.

Everything comes at a price, and right now I’m not twitching every 45 seconds to see what my blood glucose trend is doing, and that is a profound weight off my shoulders. I may be doing my fourth whole blood glucose check in as many hours, and that is a burden, but on this sunny summer day, it’s on my terms and is a burden I can accept.

Nicole’s break from a pump and a CGM lasted three weeks. Have you ever taken a similar break from your devices? Email us at info@myglu.org to tell us about it.  

Editorial note 10/19/2018: An earlier version of this story featured a chart of generic blood glucose readings. Some readers wondered if it were the author’s, but it was not. To avoid confusion, she has added a chart of her own readings.  

Glu is published by T1D Exchange, a non-profit dedicated to improving care and accelerating therapies for people affected by type 1 diabetes. If you would like to donate to our mission, please click here.

 

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