I went into my annual summer trip to Europe this year with a staunch commitment to take a break from thinking about two things: U.S. Politics and Diabetes. Unfortunately, I was only really able to avoid the former, as diabetes truly never, ever takes a vacation.
I learned that the hard way – again.
The disclaimer to this post is that I did have a lot of fun spending time with my family, soaking in modern German customs during our time with my mother-in-law, and relaxing for a week in a lovely Italian Airbnb with my brother-in-law and his whole family. Everything went smoothly this year as far as travel and group dynamics, and given our recent devastating loss, we all appreciated each other and our good fortune in life more than ever.
But for me, diabetes was still constantly pulling at the strings of my every move…
I found this both infuriating and isolating, given that I didn’t want to be the “party pooper” always complaining about my burdens that no one else in my close family shares or truly understands. (How could they?) Grrrr.
Show Me the Meds
First off, there was the big snafu with my pre-vacation meds and supplies order. I diligently went to the CVS Caremark site well in advance and pre-ordered Novolog insulin, my thyroid pills, and several other oral meds I take regularly, all related to diabetes in various ways. Or at least I thought I pre-ordered them. I had happily entered the number of my new FSA Visa spending card to cover the costs. Clever me! Then I got busy with wrapping up work and prepping for the trip in a dozen other ways… Only to realize a day before our departure that the meds had never showed up. Huh?
I called around and learned that I had somehow mistakenly signed up for a “limited-purpose FSA” that covers only vision and dental costs. Oh crap! Our kids are pretty much finished with orthodontia at this point, so I guess I’ll be ordering some fancy new glasses this year to make use of that money… Anyhow, the issue at hand was that CVS Caremark had rejected the form of payment but didn’t bother to notify me immediately -- so there I was, about to spend an entire month out-of-country with nothing but a ziplock baggie of 8 and 12-unit Afrezza cartridges (I was out of the 4-units I depend on most), plus half a vial of Novolog and some back-up insulin pens.
Which brings us to the tangled web of attempting to manage insulin dosing when you’re out of your usual routine and environment, with a limited number of supplies to boot.
Insulin Pump vs. Heat
Normally in Europe I have pretty amazing BG control, presumably because – despite an unpredictable food and activity schedule – I’m much more relaxed than at home and check a lot more often. After all, I’m not working so intensely and am relieved of all the time-consuming duties that make everyday life so hectic: laundry, grocery shopping, cooking, taxi-mom driving, paying bills, making beds, tending to the cat, etc., etc. So hey, I have loads of time and headspace to make diabetes care a priority.
This year, things went pretty well for the first stretch with just some early morning lows that I couldn’t quite explain. That is, until we headed to the Liguria region of northwestern Italy, where the weather is HOT.
It was about 85 degrees pretty much 24 hours a day, and there was a lot of sweating and swimming going on, both in a pool and in the Ligurian (Mediterranean) Sea.
No later than our very first afternoon, my freshly applied OmniPod insulin pod popped right off. A had a minor fit, given that I was working so hard to ration my insulin. But of course you have to be resourceful, so I used the applicator needle from a new pod to extract as much Novolog from the old pod as possible and applied the new one. I was running over 260 at that point, so I quickly rage-corrected, if you know what I mean.
Right about then everyone decided we should go swimming again – of course! – followed by dinner on the extremely sunny veranda, where beads of sweat were gathering under my T-shirt. The next morning, by only about 10am, my whole body was already moist with sweat. (Needless to say, lovely Italian Airbnbs are not generally equipped with air conditioning.) So I shouldn’t have been surprised when the new pod flipped right off my belly while I was changing my clothes. Double-crap!!
I’ll admit, my eyes welled up with tears. “This is just NOT working!” I blurted out to my bewildered husband, who wondered out loud what my options were.
OPTIONS, right… OK, somehow thankfully the Dexcom CGM adhesive was still going strong, but if I couldn’t keep an insulin pod on my body, what else was I going to do?! The Afrezza cartridges I had would be too high-dosage for me to use without the ability to dial back my basal insulin, which the pump allows. And I wasn’t about to start pounding carbs just to “feed the insulin”!
Injections on the Fly
The idea of transitioning to injections on the fly was a pretty scary prospect for a gal who’s been pumping continuously since 2005, and it brought recollections of Doug Burn’s hypoglycemia debacle when he was forced to do the same back in 2007.
But inject I must, given that my “options” were a Lantus Solostar pen and Apidra rapid-acting insulin pen I’ve been carrying around in my backup bag for over a year now. Were they still good? Had the FRIO done its job of protecting the fragile elixir within? There was only one way to find out.
The last time I took Lantus was literally 12 years ago, so how the heck should I know what my correct dosage is now?? And what about carb-math for meal dosing? I figured I could keep using the OmniPod PDM for that, calculating after fingerstick tests and then applying the suggested amount to dosing Apidra.
I had spread out my supplies over the bed and was slumped over them with all these thoughts frantically running through my head when my oldest daughter walked by the open door to our room and did a double-take.
“You OK mom?”
“Um… yeah, I’m just having some… complications… with my diabetes.”
Oooh, poor choice of words! But she didn’t notice. I quickly explained that I was not going to be able to use my pump this week, and would have to improvise with shots instead.
“Is that dangerous or something?” she asked.
“Weeeelll, it could be,” I replied, pushing away thoughts of an Italian hospital scenario that would surely ruin everyone’s vacation.
Meanwhile I was surpassing 300 mg/dL and needed to make a move soon, that much was sure. So I decided to start conservative with 15 units of Lantus, roughly the amount I remembered taking back in the day. Not very effective, I’m afraid. So by Day 2 I was padding the Apidra doses by adding an extra unit to every PDM recommendation. This was still not hugely effective, as I seemed to level off after meals and then shoot up into the 200s again.
Clearly, I needed more Lantus. So on Day 3 I took 17 units, then 19 the day after and then 22 and 25. By the end of the week I was up to 28 units in the morning and still had no idea whether this was due to my advanced insulin resistance since my long-lost honeymoon phase or whether the Lantus in my well-traveled backup pen was simply kaput.
(For the record, I did ask about purchasing fast-acting insulin an Italian pharmacy and discovered they cover NovoRapid for 50 Euros per vial. With the language barrier, it was unclear whether I could purchase this without a prescription, so I decided to leave that as a last-ditch resort.)
The worst part of all this was the loss of spontaneity and constant worry nagging at my mind. I kept trying to make up for running over 200 by dosing boldly, and then crashing into some unforeseen activity that everyone thought would be fun. Like after a meal dose when an unexpected game of family water polo erupted. All I did was bounce up and down in the water for 10 minutes, and suddenly my Dexcom was bleeping and I nearly had to crawl out of the pool. No one seemed to notice that this might be anything other than a grownup pooping out, so I didn’t tell anyone that I felt weak and my first reading was 31 mg/dL (!) A quick double-check produced a 63 with double-down arrows. I ate all the sugar I had in my purse and felt nauseous the rest of the day.
Of course it was also post-lunch when everyone jumped into the little bay we were visiting for a good long swim to the jetty. I had lunch IOB (insulin on board) and could no longer just shut off my pump like I usually would. So once again, I consumed a bunch of unwanted sugar and ended up sky-high after what turned out to be a pretty mild doggy paddle.
Then there was the day when our group spent a lot less time at an olive oil production facility than expected and ended up going out for a sizable lunch of local delicacies. I opted for one of my larger Afrezza cartridges to cover the food. But wait! Now we’re heading for a hike that I’m told should last an hour or more! I could see my trend arrow moving downward, so nervously purchased a largish bottle of regular Fanta before hopping into my brother-in-law’s car to drive off in search of the trailhead. After a few minutes, my Dexcom showed a big red 61 and double-down arrows. Holy crappers! I figured I’d better raise a red flag just in case things went sour really fast.
So I heard myself struggling to say, in German: “I might be getting some low blood sugar here, so I bought this Fanta just in case.”
“Das is gut, Amy,” said my very sweet brother-in-law, who obviously had only the faintest idea what I was talking about.
We proceeded to drive around for 20-30 minutes trying to find the trailhead, pantomiming questions to people who spoke only Italian and clearly thought we were nuts for wanting to climb around hills in the mid-day heat. I sipped my Fanta uneasily, watching my Dex arrow flatten out briefly and then dip downward again.
Finally, we parked the car and were reasonably sure we were standing at the start of the trail described in our travel guide. Now I was at 59 with arrows still going south and feeling woozy, so by God I downed that entire Fanta. As we started to walk, I felt better pretty fast.
But wait again! Ten minutes in, we realize this “trail” doesn’t seem to go anywhere. It's a tiny loop with some stacked ponds resembling rice paddies rather than the giant lake we thought we’d be circling. We sent a scout ahead but there was simply nothing more.
Back in the car in no time, and with a whole bottle of regular soda in my bloodstream, the Dexcom began to blare as I surpassed 200 and then 300, and then 365 and still going up. Noooo! It took two padded Apidra doses and 8 units of Afrezza to eventually get me back in range, and my stomach was definitely not happy.
There were other “complications” too, like struggling to find decent gluten-free food options (I’m severely allergic) and breaking out in hives several nights running for unknown reasons, which were maddeningly itchy and kept me awake.
Why I Hate Diabetes
Damn, how I hated to be so distracted with all of this when I just wanted to enjoy family time, good food, interesting culture and the great outdoors. I also loathe the thought that my nieces and nephews will inevitably think of me as the relative with “all the health problems.” UGH… Lord, please don’t let these ailments be the only mark I leave on the world!
I try to remind myself that really, these are all #TreatableDiseaseProblems. After all, I’m not in pain, hospitalized, or dying. I don’t have to wear a colostomy bag and I’m not on dialysis and I don’t have prosthetic limbs. I am of sound mind and body, with almost all my body parts functioning well enough to allow me an active and enjoyable life.
Still, for once I would just like to experience a nice afternoon on a sunny veranda, a spontaneous dip in the pool, or a family lunch and hike without having to stress about all this crap. Especially while everyone else around me is doing these things so worry-free…
Who’s with me, PWDs? Is it not the constant planning, worry and troubleshooting that grate on you?
For today, I leave you with a resounding #$@&%* you, diabetes.