traveling with diabetes: a user-friendly guide

What’s that, you say? Being a PWD (person with diabetes) is hard enough in daily life, much less before hitting the road to explore unfamiliar places, with weird time changes, and sedentary airplane flights? Well, you’re definitely not wrong. But with some careful planning, well-placed glucose tabs, and a sense of humor, a trip is manageable for PWDs. In this post, I’m going to tell you about traveling abroad (including a few weeks alone) for nine weeks this summer, and how that affected my health and management. It wasn’t a summer for tight blood sugar control, and I had some frightening moments, but overall my experience was worth it. I saw glaciers and volcanoes on the same day in Iceland; found a British folk band under a bridge in Amsterdam; lived in a bookshop in Paris and met two other awesome PWDs; celebrated two midsummers in France and in Denmark; and spent six fantastic weeks studying in England. I hope that the following advice will help you begin to visualize what you might need on your own journeys!
Tip #1: Pack heavy. No, don’t fill your suitcase with clothes! Pack medical supplies instead. After a week of doing calculations about how many test strips, pump infusion sets, CGMs, and vials of insulin I would use, PLUS making sure I had extras if anything went wrong, I had a full suitcase. I chose to use a plastic-outside, carry-on suitcase with zip for shoes and place my supplies on one side. To save space, I took my pump pods out of the box and into gallon-sized freezer packs. Same thing for CGM supplies. I also made sure to pack a lot of alcohol pads, tape to ensure the pump and CGM components would stay on my body, and extra Lantus and needles in case my pump failed. (If you’re trying to figure out how many insulin vials to bring, use a heavy estimate of how much insulin to pack. I guessed how much insulin I use on a daily basis and packed 0.3-0.5% MORE than that). Once it was all said and done, about half my suitcase was devoted to medical supplies. But, when I came back and had used most of the supplies, I had more space for souvenirs!

unnamed-1Tip #2: Make sure to pack extra copies of prescriptions and health insurance information! You don’t know when you might need it. During my first few days in
Iceland, I made a mistake changing my pump transfusion set. Tired, because I hadn’t slept in at least
48 hours, I tried to change my beeping, angry pump in a dirty bathroom in the Penis Museum. After I gave up because of dropping the plunger down the sink, I tried again at my hostel that night. Sitting on the bed, more exhausted than before, I quickly went through the motions before passing out. In my delirious state, I could hear my pump beeping at me, but I jabbed the little black buttons to make it shut up. Around 3 a.m., with the sun still out, I pulled myself out of bed to make it to the bathroom before I just started vomiting. I went to the front desk to ask a question. When I vomited too many times to count, and couldn’t keep a sip of water down, the worried staff member called an ambulance for me. It was my first time in an ambulance, my second day on an island where no one knew who I was, and I never felt so far away from being protected. Upset, confused, and tired, I started crying when EMS asked me my name and my medical condition. Unable to stop bawling, I pulled out my wrist with my medical ID on it and told him I had taken insulin earlier because of the high blood sugars.

He took me to a clean, bright landspitali, where I was placed in an isolated room. After the nurse checked my vitals and inserted an IV into my hand (another first for me), I was told that I’d have to wait until 9am, when the diabetes specialist came in. I called my parents, who were back in the states. I remember them asking a lot of questions – are you in DKA? Where are you? I only vaguely knew the answers; I told them I would call them later. Dehydrated, I fell into a restless sleep, woken by my bladder and nurses checking on me at regular intervals.

The specialist was tall and solid and blonde, like most Icelandic women. She seemed confident, and I just knew she had read mostly Pippi Longstocking growing up. She introduced herself as Helga and asked me about what medications I was on and how this had happened. “Are you here alone?,” she asked, looking up from her pad. I told her yes; I was traveling by myself for a few weeks before I started a school program. “You are a very courageous girl,” she told me, before handing me extra prescriptions, written in Icelandic. She suggested that I go off the pump for a little while and discharged me, because my blood sugars had finally evened out.

After this experience, I was shaken and scared, almost ready to book an airplane ticket and fly back home. Suddenly, being alone didn’t seem safe anymore. I stopped using my pump altogether, and started to rely on my CGM and insulin injections. However, I knew that even though I packed extras, I wasn’t going to be able to survive on the amount of Lantus and needles I had brought for the entire summer. It wasn’t until I got to London that I felt confident enough to try to insert my pump infusion set, in a quiet place with no one around. I had more success then, and mostly stayed on it for the rest of my travel experience.

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Tip #3: Wear your medical ID bracelet. I cannot stress this enough. If you’re traveling alone and drop low, no one knows who you are and what could be going wrong, as I experienced in Iceland. Besides, there are really adorable medical ID bracelets on the market nowadays; which gives you zero excuse not to have at least one! (I got mine from Sticky Jewelry).

Tip #4: Bring your sugar with you. If you like to have fruit snacks or fun-sized candy packs for treating lows, make sure to pack some; they’re hard to find in Europe. If you get caught in a jam, juice or soda will likely be around, but it’s hard to back those in backpacks when you’re walking around all day, exploring a new area. Plus, you might not be able to access a shop quickly enough, depending on if you’re in a museum or other excluded place. Just make sure to always have something easy to grab!

Tip #5: And finally, my last tip: be gentle with yourself. My dad always tells me that he thinks traveling is harder on PWDs, because it’s never a simple “sleep it off for a couple of days and you’ll be fine” kind of deal. Take your time adjusting to your surroundings, and go at a slower pace if you need to. Make sure you get enough sleep and water like your mom always says, and don’t feel guilty about taking the time to stop and eat, or sleeping in longer, if that is what your body is telling you you need. Time zone changes are particularly hard because suddenly you need to adjust all of your insulin intake, and it’s always going to be trial and error. When you leave and return home, try to give yourself extra time to adjust and don’t feel rushed into anything.

Also, along the same lines, it’s doubtful that you’ll have good  blood sugar control while traveling. At the same time, don’t worry about it too much. Obviously, if it’s consistently over 250 and you’re spilling ketones, that’s dangerous. But give yourself some wiggle room. You’ll never have as good as macarons as the ones in Paris, so you might as well enjoy it guiltlessly and just take the extra insulin for it.

Traveling with diabetes takes a lot of “courage,” as Helga told me, and a lot of preparation. But with the right tools, you’ll be able to travel safely and happily. I hope my advice will aid you while you make your travel plans!

pump day!

pump day (1)

Guess what day it is… it’s pump day! Instead of a camel, I received my insulin pump yesterday, and was finally trained on it!

I had decided to get an insulin pump three or four months ago at my last endocrinologist visit. My dad started using the Medtronic MiniMed in March, and I was tired of him trying to explain to me at every corner how much he liked it. Also, with a trip to Europe coming up, I was really concerned about how I would time my Lantus shots while skipping around time zones. Plus, I want to be focused on my traveling experience, not about carrying around pen needles and constantly worrying on my own about insulin intake.

A few years ago, right as I started my freshman year of college, I started using the OmniPod system, but it didn’t work for me – the pods would fall off after a day of use, I would constantly bump into them or feel uncomfortable while I was sleeping, and they were just too bulky overall. I knew that I didn’t want to go back to the OmniPod, but I’ve always been uneasy about the idea of tubing attached to my body.

After meeting with an Animas representative, I decided on the Animas Vibe. With the Vibe, I could integrate it with the CGM I’ve been using for a year now. I learned that the infusion set is similar to the Dexcom CGM I was already using. Both the Animas infusion set and the Dexcom consist of a tiny, plastic cannula that is inserted under your skin every three or six days. Usually, the insertion might sting a little, because a needle pushes it in, but once it’s inserted, it’s hardly noticeable. One of my biggest fears is that I’ll bump into something and rip out the infusion set, which is a possibility I still haven’t ruled out yet. (Fingers crossed I’ll avoid it!)

For me, it took about three months to receive my pump. I don’t even know how many offices it was faxed to. I do know I’ve spent hours on the phone, talking to people from Animas, my insurance provider, my doctor’s office, UPS, and the third party provider. It was not a fun process. Originally, I would have received the pump directly from Animas, probably about a month sooner than I actually did. But while they were waiting for doctor’s orders, the insurance company switched my coverage to a third party provider. The entire process had to start over again. I was beyond frustrated. Finally, in the middle of May, I was allowed to place the order for my pump. When it didn’t arrive on the date I was told, I called the third party provider to be told that it was delayed by a week due to low inventory. They promised to overnight it the next week. Theoretically, it would have been overnighted, and I would have had a week to use it before I left for Europe. But when that day came and passed, I called the company again, only to discover that they had decided to ship it ground, and that it wouldn’t arrive until two days before I left for Europe.

Bitter at this turn of events, I made what felt like a million calls to UPS, the third party provider, and my Animas trainer. The trainer was really helpful – even though I didn’t have my pump in hand, she set up a training date with me and I worked out how I could intercept the package from UPS 30 minutes before my appointment. It’s still a little rushed – I didn’t get to do a saline trial, but she taught me how to program the pump yesterday and download the results to send to my care team at the University of Chicago. Still, it’s better than what my dad did – he taught himself how to use his pump without any supervision, and still hasn’t been officially trained by Medtronic.

So far, besides a low last night at 3 am, my blood sugar has hovered around 120 all day. It’s obviously very new, but I’m hopeful that this will be a better solution for me overall.

Are you interested in living with a pump? I would recommend watching Youtube videos and reading up on all the systems, and meeting with representatives in order to figure out which pump would work best for you!

Check back soon for further pump developments, packing diabetes supplies for long trips, and traveling with diabetes.