Is it Possible to Decentralize Diabetes?

First of all…what does that question even mean? What does it mean to decentralize diabetes?

In this context, I think of it as deprioritizing diabetes (maybe that’s the better word to use here, but let’s bear with me…let’s stick with decentralize). It’s knocking it down a few pegs rather than keeping it as a permanent fixture at the top of my to-do list.

So I guess this question should be phrased less generally – because of course it’s possible to decentralize diabetes – and more specifically target me, as an individual who is solely responsible for her diabetes care and management…

…is it possible for me to decentralize diabetes from my life?

I’m of two minds when it comes to landing on an answer. On the one hand, I can’t really imagine myself ever being successful at decentralizing diabetes. I’m always thinking about it. Every decision I make, consciously or subconsciously, is made knowing that it will have implications (in some way or another) on my diabetes. Even when I’m asleep, I can’t escape diabetes because if it’s not directly impacting my slumber by waking me up, then it’s the first thing I think of each day because I do a blood sugar check the moment my eyes are open.

On the other hand…

I’ve been using an Omnipod 5 since late August/early September and although I struggled to adapt to it until recently, it’s since come to represent what feels like a diabetes reprieve. For the first time in my life, I’m thinking of diabetes a teensy-weensy bit less, and I do think that my newfound understanding of the automated insulin delivery system is directly responsible for that. It’s been scary to relinquish control that I’ve maintained for so long over every aspect of my diabetes routine – and hand it over to a piece of technology, to boot – but it’s finally beginning to pay off. Which reiterates the question: Is it really, truly possible for me to decentralize diabetes and let myself be a person first, rather than a diabetic first?

After writing this post and musing further on the subject, I’d comfortably say…it very well could be. With some more time and heaps of patience, I do think I can get to a point where my whole world revolves a little less closely ’round my diabetes.

8 Things About Diabetes That Make Me Want to Rip My Hair Out

This post was originally published on Hugging the Cactus on June 5, 2020. I’m sharing it again today because I’ve had my fair share of moments lately in which I’ve genuinely felt like ripping out my hair (or punching the wall) over my diabetes! Read on and find out if you agree with this list – and leave a comment to let me know what you’d add!

Life with diabetes can be the opposite of a cakewalk. In fact, it can be so frustrating at times that I seriously consider ripping my hair out due to sheer agitation.

When thinking about the things that drive me nuts about diabetes, I came up with a list of 8 occasions in which I come this CLOSE to losing my freakin’ marbles:

1. When low blood sugars refuse to come up…

2. …And when high blood sugars refuse to come back down.

I’m considering these first two as separate list items because the scariness of a lingering low and the frustrating nature of a stubborn high can be two very different types of “GAAAAAAAAHHHH!” But both can be especially suck-y when you feel and know that you’ve been doing everything right to treat them without experiencing the expected results.

3. Pod and CGM sensor failures.

Oooh, any sort of device failure can be so exasperating any time of day. But they’re worse when they happen at inconvenient times, such as in the middle of the night or during an important conference call. All diabetes technology should work flawlessly at all times, but that’s not always the reality that we live in.

4. Inaccurate results.

I can’t stand when my blood sugar meter or my CGM report false readings. Sometimes, I’ll check my blood sugar two times in a row just to see how close both readings are to one another, and it makes me want to throw my meter across the room when I see that they’re off by 20+ points. Once, I had a reading that was off by more than 50 points! That makes a major difference in how much insulin I give myself in that moment in time, so inaccurate results can really derail my blood sugars for hours after.

When I first found this illustration, I could’ve sworn the lady was flipping the bird…which would also be an accurate depiction of what these 8 things make me feel like doing!

5. Folds in the adhesive.

Whenever I apply a fresh sensor or a pod, I try to be super careful and make sure that the adhesive sticks smoothly…but despite my best efforts, that doesn’t always happen. Folds in the adhesive are far from the worst thing in the world, but they do make it more difficult for my devices to stick on for the full length of time that I need to wear them, and I usually end up having to add tape around them to reinforce the hold. More tape = more folds = more irritation!!!

6. Unexplained blood sugars.

Anyone with diabetes has been there, done that. You could follow the exact same routine from one day to the next, even eating the same foods at the same times, and get totally different blood sugar results. Or maybe you thought that you bolused perfectly for a meal, only to find out hours later that you’re much higher or lower than you anticipated. Whatever the reason behind them may be, unexplained blood sugars are just obnoxious.

7. Screeching alarms.

Speaking of things that are obnoxious, let’s talk about wailing OmniPod or Dexcom alarms for a hot second. There’s nothing like a resounding BEEEEEEEEEEEEEEEEEEEP to ruin your day!

8. The INSANE costs of our supplies.

Undoubtedly, the thing that most makes me want to rip my hair out when it comes to diabetes is the cost of supplies. I’ve blogged more and more recently about the criminal cost of insulin – since the 1990s, the cost of insulin has increased over 1,200% (!!!) – and I’ll continue to do so until EVERYONE with diabetes can afford this life-saving medication. We never asked for diabetes to happen to us. But it did. And the fact that many people with diabetes have to make sacrifices in order to, well, survive, is simply not okay, and the most infuriating thing about living with this chronic illness.