At the Medtronic diabetes advocacy forum this past weekend [disclosure], there was a brand-agnostic discussion about the things we wish we had known before starting on an insulin pump. I’ve been pumping since 2004, and switching from injections to the pump was a big hurdle for me, for physical and emotional reasons:
I wish I had known that wearing a medical device was going to be an easy physical integration. Even back in 2004, the Medtronic 512 insulin pump (in “smoke” – my first pump) was smaller than a box of raisins and the infusion set was about the size of a quarter. In terms of straight real-estate, the pump didn’t take up that much room on my body. (Thought the first thing I had to do was confirm that. Even though I was supposed to wait until my official “pump training” at Joslin later in the month, I wasn’t good at following those rules*, so when the pump was delivered, I had to bust it out. I remember ripping it open and sticking a test infusion set onto my abdomen to make sure it was a good decision. That first infusion set was a moment of panic and change. The subsequent 1,200 have been pretty meh, though.)
I wish I had known that going to the bathroom was going to be a strange, new journey. That first week on the pump was a precarious one … for the pump, because it was under constant threat of falling into the toilet, being dropped into the sink, and smashed against the cold, tile floor. The act of unzipping and lowering skirts, pants, and shorts became this awkward dance (the tubing tango? the don’t-forget-to-bolus-for-the-mashed potato? the Lantus lambada? the basal ballet?) to avoid disconnecting the tubing or pulling out the site or getting tangled up in the damn thing.
I wish I had known that the pump would become a discreet visual cue to my fellow PWDs that we were part of the same family, so to speak. It’s an instant connection; when I see someone on the subway with their tubing sticking out of the pocket of their jeans (or disco boobs), I know we have something intimate and intense in common. When I hear the *boop beep boop” or the tuneless lilt of Fur Elise coming from a fellow airplane passenger, I want to send them a drink (orange juice, if they’re low). Instant connection.
I wish I had known, and had been certain, that taking care of my health was sexier than any medical device wasn’t. My A1C is in a range I’m happy with. My health is very good, especially considering almost thirty years with type 1 diabetes. It’s possible to run races, get busy, and travel with an insulin pump on tap. All of the moments of self-consciousness I’ve had in regards to diabetes really do pale in comparison to how my hard work, my medical team, and advances in diabetes technology help keep me alive and well. (But I also wish that the community, as a whole, wouldn’t assign pumps as “necessary” for diabetes control. Pumps are a tool that I’m grateful we have available to us, but not using an insulin pump doesn’t equal out to “not trying hard enough.” MDI works really well for some people. Your diabetes may vary.)
I wish I had known how important micro-dosing would become to me. On injections, correcting a blood sugar of 140 mg/dL down to 100 mg/dL meant taking the risk of gaffing up the insulin dose, either from drawing up too much into the syringe, or too little, or having some of the dose leak back out of my skin at the injection site. With the pump, I can correct with precision. As rage-bolus‘er, this is a helpful option.
I wish I had known how grateful I’d be for my insulin pump in the last few months of my pregnancy. Constantly changing basal rates and insulin:carb ratios were tough to track, but easy to implement using an insulin pump. And being able to track the amount and frequency of the insulin I was dosing helped me best-juggle all the chaos of being pregnant with type 1 diabetes.
And I wish I had known it wasn’t permanent. Diabetes, and not making my own insulin anymore, is permanent. As it stands now, there isn’t anything I can do to coax my islets into doing their jobs, but I can choose to put on my insulin pump, and I can choose to take it off. On the days when the pump is frustrating me and making me feel like it’s going through a Grinch-heart-growing-three-sizes moment, I can revert back to multiple daily injections until I’m emotionally ready to suit up again. A tattoo is more permanent, and way harder to remove on a whim, than my insulin pump. Had I realized how pumping is an option, not a mandate, I would have switched over years earlier and been better for it.
What did you wish you had known, before changing diabetes therapies?
* Follow the rules!!