I was up to six shots a day. This wasn’t working.
It was May 2016. And I had some feelings about this. When a type 2 diabetic transitions to insulin, it’s common to feel, somehow, like you’ve failed. It’s the biggest gun in the arsenal; it’s a whole new regimen of needles and equipment and balancing drugs against our relationships with food and our bodies.
I’d leapt that hurdle and thought I was making it work. Then came a hospitalization that almost killed me (more on that in another piece) and a series of life changes. My endocrinologist wanted me to have more moment-to-moment control of my insulin, and my C-Peptide test revealed that my body was manufacturing less insulin than it was a year ago, even before a pronounced weight loss.
So, it was time for a pump. This began a three-month process of wrangling insurance, getting shipped items both correct and incorrect, and climbing a bureaucratic ladder in order to prove that yes, this was medically necessary and yes, it would make a profound difference in my life.
I’d finally cleared all gatekeepers and was having my final chat for the pump and accompanying supplies from a representative of Medtronic. We went down the list of to-dos, and I answered all his questions. And as we wrapped up, he had one more for me: “OH!” he exclaimed, with what sounded like a wry grin on the other side of the phone: “What color do you want?”
What color? I remember thinking that was sort of irrelevant, like asking someone what flavor of pre-colonoscopy laxative they wanted. And then I laughed; I was going to be with this thing 24/7, for the rest of my (hopefully) long life. Perhaps a little bit of fashionable color for a new accessory wouldn’t be so bad. “What do you have in a purple?”
My rep assured me that the Medtronic pump I’d be receiving was going to be a manly, “Minnesota Vikings purple.” What I received 48 hours later…was this.
That is not “Minnesota Vikings” purple. It’s “I ride a unicorn to work” purple (and I do). I named my pump Prince, because I was still hurting from the loss of the Minneapolis Marvel last April.
After months of phone calls and paperwork, I thought the hard part was over. Nope.
Training: Like the Karate Kid, but with more math
The next step was a meeting with an educator to learn how this little beacon of life-saving technology worked; Nurse Debi would be my pump Sherpa, guiding me up this confusing new mountain. She has a loud and disarming laugh, and made it very clear that bashfulness wasn’t part of her makeup. I felt safe and comfortable with her, which made a giant difference in my pump training. I think if I’d been educated by someone more staid or stoic, pride and an unwillingness to look stupid would have gotten in the way of the process, and messed up this new relationship.
Across three sessions, I learned how to track data of insulin use; how to give myself a bolus; how it could talk to my glucometer (if insurance would cover the strips and hardware for a smart glucometer, which it wouldn’t); how to wear the device so I could move normally throughout my day; and most importantly, how to insert the tubing into me and prep the pump, which would be an every-three-days process and eventually feel like clockwork.
I felt prepared. I felt trained. I was ready to make this thing work. I got my new prescripton for insulin vials to fill the pump, and I was excited to get started.
The week from hell
My first morning wearing the pump, I walked out the front door of my home…and got the tubing caught on the doorknob. I yelped like a small dog and fell to the ground, like a cartoon character.
I should have looked at that moment as an omen. The first week left much room for improvement, to put it mildly. I wasn’t warned about the timing and chemical backlash my body would feel as I transitioned from a different brand and type of insulin (overnight sustained release) to the type the pump used, which was identical to the mealtime insulin I’d used over the past four years. Having a basal rate—that is, a regular flow of insulin from the pump into my body—was something my body wasn’t used to, and the loss of the overnight sustained release insulin resulted in weird symptoms of withdrawal. I was snarky, I had a constant headache, I gained nine pounds, and I couldn’t sleep well.
I was also reporting in at my endocrinologist’s office every morning to provide data about what my body was doing in response to this new addition; insulin is a serious drug, and the pump is serious business. Five days of schlepping to my doctor at 7 AM made me a grumpasaur, but the tweaks were worth it.
Ten days in, and the routine became normal. I’d learned the ins and outs of what the pump could do, how it tracked data, and how to wear it without catching on all manner of things (chairs, doors, other people, etc.). I felt like a champ, and the weight gain disappeared as soon as I fell back into a routine. And progress yields results; my next hemoglobin A1C was a 7.4, a drop of two full points.
Now it’s me and Prince, against the world. And while I still growl daily at this disease and what it’s done to my life, I feel pretty good about the two of us.
Tips and tricks: A List
Here are some takeaways that I wish I’d had in hand before this process began:
Nothing happens overnight. My endocrinologist assured me at the start that receiving my pump and getting onboard would be a fairly quick two weeks. With insurance haggling and finding the right paperwork, that became months. A little patience and positive thinking would have done me a world of good at the outset.
The insertion process looks crazy, but is much easier than needles. Inserting the tubing into my body via subcutaneous injection made me feel sort of like a cyborg; here was this tube always coming out of me! But two injections a week beats the pants off of six a day. I’m bad at math, but I know that much.
Forgive yourself a little. This is not an exact science. I had a major failure complex about the need for the pump, and how difficult it was for me to adjust. It had very little, in the end, to do with my actions.
Figure out where to wear it that works for you. I tend to slit holes in the top of my pants pockets and snake the tubing through so I can quickly get to my pump without it being constantly visible. It took me six purchases of clips and doodads before I found the right way to wear it in my pajamas at night. Find a location for daily wear that works for you, and stick to it (with insertion points on your body rotated for safe continual use, of course). I swap left and right pockets and insertion points each time, for example.
Ask questions. My trainer was my best friend in this process, and made the success I’ve had with the pump possible. Swallowing my pride opened up a world of comfortable use.
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Jonathan Elliott has written for The Guardian, Cinema Blend, and Americans for the Arts. He’s passionate about patient advocacy, diverse abilities visibility, comic books, theater, good books, and bad television, although not necessarily in that order. He works in communications for a statewide not-for-profit organization in his deeply loved home state of New Jersey. He can be found on Twitter at JonathanElliott and Instagram at JonLElliott.