In Which I Love Diabetes Technology, Except When I Hate It

Diabetes treatment has advanced a lot in recent years. Back in the day, you had a little chemistry set in  your bathroom to measure the sugar in your urine (which is delayed by a few hours) and you took one insulin injection a day, of a dose that might stay the same for years at a time. Both insulin and blood sugar monitoring progressed to allow people to measure their own blood sugar at home using a small meter that would fit in a pocket and to be able to vary their diet a bit more with more injections of faster acting insulin.

A cure is what we all really want, of course, and, though there is some good research going on, in practice it's still pretty far out of reach. We actually weren't told this, but it seems people being diagnosed with type 1 diabetes have been told at least since the 1970's that a cure is 5-10 years away.
While we wait for a cure or at least radically improved treatment that doesn't involve regular insulin injection and blood sugar monitoring, we can be grateful for the amazing technology that's available.

Kittygirl wears a Tandem Tslim X2 insulin pump and a Dexcom continuous glucose monitor (CGM). For those who are unfamiliar with the technology, I'll explain how they work.

 The pump infuses insulin into her body through a site that is changed at home every three days. In her case, we use a site that leaves a tiny needle in her skin, which is attached to a long flexible tube that is attached to the insulin-filled cartridge in the pump. The pump is programmed with a "basal rate," which is a constant delivery of insulin at a certain rate and ratios to cover carbohydrates she eats and to lower high blood sugar. This particular pump has a fairly recent feature known as Basal IQ. Using CGM data, it cuts off her basal insulin when it predicts that her blood sugar will fall below 80 soon and/or when it is dropping at a very fast rate. Many people find this invaluable and rarely have lows because of it. In Kittygirl's case it is a useful tool, but her blood sugar tends to slide down to low very slowly and cutting off the insulin doesn't do enough so Basal IQ prevents a few lows and only mitigates the rest, making them easier to treat. In the picture below, the red areas on the pump show when insulin was cut off.

Her Dexcom CGM consists in a sensor she wears on her arm that is changed every ten days. A tiny wire goes under her skin and there are chemicals on it that react to the glucose level in her interstitial fluid and transmits the data to both a phone and her pump every ten minutes. Her phone transmits the data to the cloud, where Mr. Engineer and I can receive it through an app on our phones. A pic of the sensor and her phone are below.

These are both amazing tools and I'm incredibly grateful for them. Being able to see Kittygirl's blood sugar at any time even when we're away from her has allowed us to do two things with confidence. First of all, it has allowed us to understand in a way you simply can't even with hourly blood sugar measurements with a meter the way food, activity, and insulin affect her body. This has allowed us to make adjustments to her food an insulin doses with confidence, which has allowed us to keep her blood sugar in range much more often than average (though still not as often as we want to), allowing for an A1C that consistently impresses her doctor and gives her the best chance at good long term healthy.

Secondly, it has allowed us to send Kittygirl to birthday parties, on playdates, and to other places where the adults in charge have little, if any, training in diabetes care. If there is food involved, I simply ask the adult to text me a  picture so that I can give a carb count. When Kittygirl was younger, I gave a quick tutorial in using the pump, but now Kittygirl does that herself with an adult looking on. I can also see on my phone if Kittygirl's blood sugar is running low and text the adult in charge to give her some food before it gets too low.

So why do I sometimes hate this awesome technology? The first reason is because I feel kind of bad for her because she has to wear it all the time. Diabetes is an invisible disability, but diabetes technology can be very visible, and sometimes that bothers Kittygirl. In the summer kids at the park or the pool and constantly asking her what's on her arm, and she really doesn't feel like telling them. If I get the pump out to give her insulin for  a snack in front of strangers, they always want to know what I'm doing. It gets tiresome. 

In the interest of full disclosure, I should note that Kittygirl could technically wear the sensors on a less visible part of her body. In fact, the only FDA approved areas are the stomach and the lower back. However, Kittygirl is so lean that the sensors have a hard time accessing enough interstitial fluid to get good readings. 

Also, I feel kind of bad when Kittygirl points out that she's almost never truly naked because she always has a pump site and a sensor. This doesn't truly bother her. She just points it out as an interesting fact. However, it makes me a little sad that she needs to wear these devices to live the most normal life possible.

These concerns are outweighed by the benefits that the technology gives both to her and to me and Mr. Engineer as her parents, but I wish we could live life without thinking about blood sugar and insulin doses.

The other reason I sometimes hate diabetes technology is all about me. I have a tendency to let it take over my life. This is particularly true for the Dexcom. I have a bad habit of obsessively checking the Dexcom follow app on my phone, even when a huge change is unlikely. For years, I had the alarms on my phone set such that they went off as soon as Kittygirl's blood sugar was out of range. This was unnecessary when she was with me because her alarm would go off and we'd get alarms in stereo. When she wasn't with me, for instance when she was at school, the alarms were useless because I wasn't the one in charge of dealing with them.

This all led me to be seriously stressed out over Kittygirl's blood sugar. In fact, I even damaged a phone in my frustration over her blood sugar. Squirrlboy and I were in the living room doing homeschool work (it was history, in case you care) and Kittygirl's low alarm kept going off. I knew that she was taking a test that morning, and it frustrated me to no end to think that she and her teachers had to keep getting interrupted and that she probably wasn't performing at her best level. Then Squirrelboy made some kind of wisecrack and it pushed me over the edge. I threw my phone across the room. Though it was in a case and landed on carpet, I still managed to shatter the screen.

After that I determined to be less crazy about Kittygirl's blood sugar and I even sometimes turned off the alarms when Mr. Engineer was fully in charge because they were on an outing together or I was away for the evening. I still kept them on most of the time until about six weeks ago, however.

At that point Mr. Engineer (who, you might have noticed, gives pretty good advice) told me he was really tired of me freaking out over Kittygirl's blood sugar all the time and also tired of hearing alarms in stereo and I had to do something to solve the problem. I experimented with lengthening the amount of time Kittygirl's blood sugar had to be low or high before my alarm went off. It was surprisingly freeing. I lengthened it even more. I still get alarms when Kittygirl's blood sugar is out of range for more than an hour on the low side or two hours on the high side, but I'm not obsessing over it anymore and it's amazing. Sometimes I actually go a whole school day without checking my Dexcom app.

Diabetes technology offers a lot of benefits. I wish it were available to everyone. It can offer a child with diabetes freedom that's harder to come by when their blood sugar has to be checked with a meter regularly and they need to receive injections of insulin many times a day. However, caregivers of type 1 diabetics need to check themselves to make sure they're not letting the technology take over their lives.