Managing T1D at Sea

Yo ho, yo ho, a pirate’s life for meeeeee…

I gleefully sang this song multiple times throughout my short Disney cruise getaway earlier this month. I love cruises. I love Disney. I love tropical islands. So I got to combine my love for all three by embarking on a cruise to the Bahamas with my boyfriend that was planned sort of last minute, but desperately needed nonetheless.

3A8207E0-BA1C-4791-ADE7-A12236CF6C74
When it comes to diabetes management on a cruise ship, I’m the captain (who does what she can to navigate safely through rough waters).

I’m so glad we went, even if it did involve a helluva ton of preparation time. Because as you’ve probably figured it out by now, traveling with diabetes requires extra work. But traveling with diabetes knowing that you’ll be stranded in the middle of the ocean for part of the time necessitates apocalypse-level planning.

There was a whole list of questions I needed to answer as I packed my bags for the trip. How many pods should I bring with me? How much insulin? How would I keep said insulin cool? What types of snacks should I have on hand? Should I bother bringing Glucagon? What about chargers for all of my devices?

The answer to most of those questions was…just bring more supplies than I think I’ll need. For instance, I brought triple the number of pods than I’d actually go through over the course of a four-night trip. I packed extra snacks – a few unopened boxes of granola bars and a whole bottle of glucose tablets. I don’t even know how many alcohol swabs or spare syringes I brought, that’s how many I crammed in my luggage. And I deemed that two bottles of Humalog, plus Glucagon, would be ample (after all, I’d rather have it all and not need it than need something random and not have it).

I ended up purchasing a cooling case on Amazon that would allegedly keep my insulin cool during the day trips we’d make to the islands. I say “allegedly” because it wound up not being that great (otherwise, I’d add a link here to purchase it). After a day on Disney’s private island, Castaway Cay, in which the cooling case never left the shade of our umbrella, I returned to our state room to discover the contents of the case were a bit warmer than I had expected. Disappointing, but the insulin still seemed safe to use.

In terms of meals and snacks on the boat, there was a plethora of foods to choose from. Oh, and virtual 24/7 access to a soft-serve ice cream machine. Aaaaand a lot of tempting tropical libations. I tried to stick to healthy options and incorporate vegetables or proteins at each meal, and of course I drank plenty of water, but it was vacation and I couldn’t resist a Mickey waffle at breakfast each morning or the occasional mojito-filled coconut. So it’s not totally surprising that on average, I ran a bit higher than I’d normally like for the whole cruise, but I don’t regret it because it’s really hard to judge how much insulin to take or food to consume when the days are jam-packed with physical activities and sun exposure. And I accomplished my goal of avoiding low blood sugars as much as I could, because I absolutely did not want to be stranded on the sand treating a low when I could’ve been swimming in the most gloriously warm turquoise waters with sea creatures.

Even though my diet wasn’t the healthiest, I was able to combat some of those choices with a lot of movement during the cruise. Between strolling the walking track that was on deck three of the ship, bicycling on Castaway Cay, snorkeling/swimming at the beach, and walking ALL OVER both land and ship to get wherever I wanted to go, I clocked some seriously miles on this vacation. Who would’ve thought that being on a boat would lead to so much exercise getting automatically incorporated into my day?

So sure, going on a cruise vacation does add an extra layer of stress to trip preparation. But trust me when I say it’s worth it. I was blissfully happy during the whole cruise and, even though I didn’t need more than half the supplies I brought with me, I enjoyed the peace of mind it resulted in because I’d taken the time to think things through. It just goes to show that diabetes can’t prevent the enjoyment of any type of travel.

Advertisements

My Diabetes Hates Weddings

So basically everyone in my life right now is engaged, or on the fast-track to getting engaged.

And that’s awesome! No, seriously, it’s an exciting time for a lot of my family and friends. And I’m happy to be part of it all because I like going to weddings. Who doesn’t love to celebrate love?

Well, I can tell you what doesn’t love to celebrate love…MY DIABETES.

My diabetes effing hates weddings.

My diabetes hates weddings SO much that I’ve yet to go to one where it doesn’t act up in some way.

My New PDM (1)

I was naive enough to think that it would actually be a good diabetes day during the last wedding I attended. And it was, for the most part: I woke up, had a Dunkin Donuts sandwich for breakfast, got dressed and made-up. I showed up for the ceremony with a slightly low blood sugar that was swiftly corrected with a mini box of raisins (oh, if only I knew how many more I’d consume that night…).

I was fine, right through the cocktail hour and the start of dinner. But that’s where the troubles began. You see, there weren’t many passed hors d’oeuvres during the cocktail hour, and I could’ve really used some because I hadn’t eaten anything besides the sandwich and the raisins all day long. By the time dinner started, I was ravenous and basically shoved anything within arm’s reach into my mouth. This included a lot of cheese, meats, and pieces of flatbread.

If I’d actually been thinking about how my blood sugars usually respond to slow-acting carbs in things like flatbread, I might’ve actually wound up okay. But over the course of the next several hours, as wedding guests were whooping it up on the dance floor, my blood sugar was making a slow and steady climb up into the 300s! When I finally realized this, I started taking correction boluses that, apparently, were far too aggressive…because when I finally ended the night in my hotel room around 1:30 A.M., I was in the 70s. And dropping.

My lowest blood sugar was 43 that night. I ate multiple packs of raisins, 5 or 6 glucose tablets, a FiberOne bar, and half a pack of peanut butter crackers. All between the hours of 1:30 and 4 in the morning. It was exhausting. I was tearful and sweating so badly at one point that it looked like I had just come out of the shower. I even wound up sending my sleepy boyfriend down to the lobby at one point to buy me an orange juice, because I was running out of low blood sugar remedies. I drank half of it and was relieved to see my CGM showing, at long last, a diagonal up arrow. I couldn’t believe that I’d just spent the last few hours hovering below my “low” threshold on my CGM, but I didn’t waste any more time thinking about it – I was extraordinarily tired and happy to finally go to sleep.

But now that I’ve had time to think about it, I’ve realized that I need a new strategy for myself and my diabetes when it comes to weddings. I’m going to be my cousin’s maid of honor next month, for goodness’ sake, so I want to do everything I can to ensure “decent” (i.e, blood sugars under 200 but over 80) for the special day.

A key to success, I think, will be regularly scheduled meals and making sure that I avoid an empty stomach at all costs.

Adventures in Low-Carb Snacking

I’ve logged a lot of miles on the road this summer. From planned trips back to my home state of Massachusetts to weekend getaways to neighboring states, I’ve spent many hours in the car. Conversations with my partner and friends on the phone, as well as podcasts, have helped time pass…but so has snacking on a variety of road-ready foods.

I admit that I often don’t choose the healthiest road trip snacks. I tend to gravitate towards “comfort” foods – anything from peanut M&Ms to cheese-flavored chips. I wish that I craved something better for me, like carrot sticks or celery stalks, but my intense dislike for long hours on the road coupled with the need for convenient foods only (i.e., nothing that needs refrigeration) results in me making less desirable snack choices.

In turn, my junk food cravings are typically disastrous on my blood sugar. I do bolus for the junk, but since I’m forced to sit idle in the car, I face more frequent and intense blood sugar spikes than I would if I were able to get some movement in shortly before or after consuming the food. So not only do I end up eating food that’s bad for me, I also have to deal with the consequences on my blood sugar, and it’s a lose-lose situation.

That’s why I created a little game for myself during my last long car ride. When my boyfriend and I stopped at a gas station to fill up the tank before driving for four hours, I decided to go into the convenience store that was located there and scour the shelves for the lowest-carb snack foods I could find that were also remotely appetizing.

Enter…”pork skins”.

low carb snack
The big selling point of this snack? The fact that it’s 0 carbs per serving!

The name itself is positively revolting, but the actual snack is a savory wonder for a T1D. It’s got 0 carbs in the ENTIRE bag. It also happens to be chock full of protein and is relatively low in calories. What a find! We totally crushed the entire bag in about two hours flat.

Other findings from this particular trip include a lower-carb bag of trail mix that was incredibly satisfying. I was pleased to have found one that wasn’t a mix of 20% nuts and 80% candy/dried fruit, because the latter is what always messes up my blood sugar. I also snagged a bag of beef jerky, because I can always count on that to be a delicious low-carb treat.

And my drink of choice? I found a blue Gatorade Zero, which I’d never had before because it’s not sold in stores I go to when I’m up north. I loved it and was especially appreciative for it after a weekend of not getting enough fluids.

All in all, it was kind of fun to see what kinds of snacks I could find that wouldn’t do damage to my blood sugar. I wound up finding some stuff that’s bound to become staples for future road trips, and was so sated by the combination of them that I didn’t even need to cook dinner when I got to my apartment. Turns out that low/lower-carb snacks pretty much rule!

My New PDM

After four years filled with various highs and lows, I had to say farewell to the PDM that was virtually glued to my side, working with me to manage my diabetes.

Our parting was inevitable. Around the Fourth of July, I noticed that the battery symbol on my PDM was low, meaning that the triple A batteries within needed to be replaced. I put fresh ones in, but upon the system restarting, the PDM asked me to input information such as the date and time. And then…the pod I’d been wearing for less than 24 hours beeped loudly, signaling to me that it had failed. I figured it must be due to the battery replacement, but this definitely wasn’t normal. So I did some investigating.

I consulted with my mom and she told me that this was a sign that the internal battery within the PDM, the one that cannot be replaced, was starting to run out of life. She advised me to call Insulet to get a replacement PDM. That’s how I discovered that the warranty on my PDM actually expired in January of this year, and that I’d have to pay a nice chunk of change (about $500) to get a new one, under warranty.

It was a painful process, as I’ve detailed in recent posts, but I finally did get my new PDM. Fortunately, it only cost me $100 (I guess I should be glad I met my $900 deductible so quickly).

My New PDM.png
A very special delivery.

I waited to power up the new system until I was due to change a pod – didn’t want to waste a pod if I didn’t have to – and I’m really glad I set aside a half hour or so in order to input all of my settings into the new PDM. It was a bit stressful, really, and just as I was cursing the PDM for not automatically knowing all of this stuff about me, it was set up and ready for action.

It was a strange feeling, disconnecting myself from that PDM I’d relied on for four years. It sounds dramatic, I know, but that PDM and I have been through a lot. As I powered down the system, I had a little moment and felt gratitude toward the PDM (and I suppose all of its little quirks). I put it inside the box that the new one arrived in, and the old PDM now sits in my diabetes supplies cabinet, neatly tucked away so in the event that I need to consult it for old information or data, I can.

And now I can say I’ve got a shiny, pristine PDM that’s under warranty, which I must admit is a relief.

3 Tips For Anyone Turning 26 with Diabetes (and Switching Health Care Plans)

Do you have diabetes and will turn 26 in the near future? Will you be forced to switch from your parents’ health insurance to your own plan? If the answer to both of those questions is “yes”, then you’ll definitely want to take a minute to read my tips on how to make the transition as smoothly as possible. And even if you answered “no”, you still might find this to be a worthwhile read because chances are, either you or someone you know will have to go through this process, whether or not you/they have diabetes.

Here are the three most valuable tips I have for anyone who just turned, or is about to turn, 26 years old and is concerned about switching health care plans:

HUGGING THE CACTUS - A T1D BLOG
I figured out these tips the hard way. Save yourself a lot of frustration and time by following them A.S.A.P.

Tip #1: Ask your doctor for copies of all of your prescriptions. Do this well before your actual birthday. That’s what I did, anyways – I had a scheduled appointment with my endocrinologist at the end of April. That’s when I requested a copy of every single prescription she’s ever written for me, including for medications that I don’t really use anymore (e.g., Lantus, the long-acting insulin I used prior to my insulin pump). Then, I made multiple copies of these prescriptions, taking care to separate the originals from the copies. This tip really came from my mother, who told me that having the prescriptions now would save me trouble later. And she was right: When I did send in my Humalog prescription to Express Scripts, I did so with more confidence because I didn’t have to scramble to request it from my doctor.

Tip #2: Start the process of reordering supplies as soon as possible. Even if it means starting to reorder things on your actual birthday…do it. I’d say this is especially important if you’re running low on supplies. It took me nearly two months to start receiving stuff. Part of this was my fault because I procrastinated, and was also at an advantage because my mother took the time to order me plenty of extra supplies before I made the switch. But it was also the fault of the companies I was ordering from, who, for various reasons, didn’t send out my supplies on time or needed a longer period of time to review my orders before shipping them out. I’m lucky that I can say that I was never truly worried that I was going to run out of supplies, but the thought did cross my mind a few times, and it was unpleasant. So save yourself from aggravation and just get the ball rolling as soon as you can.

Tip #3: Keep records of everything. I keep a physical folder that contains receipts, prescriptions, photocopies, notes, and various other documents related to my health. I can’t say for sure what I’ll actually need to keep or throw away in the coming months, but I do know that it’s smart to hold onto this stuff in the beginning. That way, during my company’s next open enrollment period, I’ll be able to make informed decisions regarding things like how much money to put in my flexible spending account (FSA). Plus, any notes that I’ve taken during phone calls have already proved immensely helpful as I’ve needed to track down specific customer service representatives in order to take care of issues that have come up. It can be a little cumbersome to remember to keep all these papers, but I know it’s the right thing to do and that there’s no way that I’ll regret it.

BONUS Tip #4: Advocate for yourself until you get what you need. At first, I felt extremely awkward for calling Dexcom and Insulet every single day for a week. But then I realized that I shouldn’t. They weren’t going to make sure that I had my supplies: I had to depend on myself to do that. I also felt a bit stupid asking just about every customer service representative that I spoke to how everything works, but I eventually got over that, too, because it’s vital to understand this stuff, even when it seems extraordinarily complicated. So I’d tell anyone who’s going through this process, or who is about to go through it, to keep up the hustle. Don’t ever feel shame for asking too many questions or calling too many times; when it comes to all this, the limit doesn’t exist. Ask others for help when you need it (I spoke with all sorts of people in the DOC about my issues, and goodness knows that my mother provided me with all sorts of advice and support throughout this) and, with their assistance and a little determination on your part, you’ll get through this tiresome transition.

Why is it so Difficult to Order Life-Saving Medical Supplies?

When it comes to obtaining my diabetes supplies – life-saving pieces of medical equipment – I’ve discovered that it’s not a simple process. It’s not exactly like purchasing something on Amazon with a single click. Rather, it’s a convoluted, head-scratching, infuriatingly long procedure that apparently involves multiple calls to a variety of companies.

As of this writing, it took approximately 4 calls to my endocrinologist’s office, 12-14 calls to Insulet (the maker of my OmniPod insulin pump), 6 or 7 calls to Dexcom (for my CGM supplies), 2 calls to my health insurance provider, and 1 call to Express Scripts just to get everything all straightened away. These calls took place over the course of 2.5 months, and as they grew in frequency, so did my overall frustration and confusion.

The biggest headache was definitely caused by the lack of effective communication between Insulet and my endocrinologist’s office. I needed to get a new PDM, and Insulet’s job was to contact my doctor’s office and get a letter of medical necessity in order to get a PDM shipped out to me. Simple, right?

Why is it so Difficult to Order Life-Saving Medical Supplies_
My call log looked like this for several days in July – so many phone calls to Insulet/OmniPod and to my doctor.

Far from it. About a week after I placed the order for the new PDM, I got an email from Insulet saying that my doctor’s office had failed to return their faxes. I was advised to contact them to determine the delay. When I did, I spoke with a receptionist who, despite my clear explanation of the issue, misunderstood what I was asking for and left me a voicemail to say that she didn’t know what Insulet was talking about seeing as their information showed that I had received a shipment from them. (For whatever reason, she thought I needed more pods, which I did have delivered around the same time that all of this was going on.)

After several more back-and-forth phone calls, I cracked the case wide open: Insulet had the wrong contact information for my doctor. While my endocrinologist hasn’t changed in about a decade, her office location has, and Insulet still had the old one. I felt like an idiot for not realizing this sooner, but then again…why was I the one who was jumping through so many hoops and making so many contact attempts in order to figure out what the hold-up was? It was absolutely ridiculous, but I certainly felt relieved – and satisfied – to have personally solved the mystery.

I wish I could say I had a better experience with Dexcom, but that proved to be similarly headache-inducing. I thought that I was set to receive my supplies after I’d signed a payment plan for a 90-day supply of sensors and transmitters, but when they didn’t show up after a month of waiting, I knew something was wrong. I called Dexcom and discovered that the order, for reasons unknown, just didn’t process, so I had to sign a brand-new payment plan and had my case assigned to a different customer service rep. I was pretty pissed off by the lack of communication, but the one silver lining was that I’d already managed to pay my deductible in full (ha, no surprises there), so my Dexcom supply order would cost me less. Again, it was unbelievable that I never got an update from the company regarding my order’s status, but I did feel a sting of pride in myself for getting it all worked out on my own.

I don’t know why everything about this process is so agonizing. But what I do know for sure is that it seems that the only person I can count on to get my supplies ordered properly, in the end, is myself.

When Diabetes Isn’t Responsible for an ER Trip

If something unexpected happens to me in terms of my health, I can almost always safely blame diabetes for causing whatever it may be. But when I absolutely, definitely cannot blame my diabetes, I can’t help but feel angry at my body for rebelling at me in ways that it shouldn’t. Particularly when those ways end up with me making a trip to the emergency room.

Let me set the scene: It was a Tuesday evening, around 7:45 P.M. My partner and I were watching an episode of Stranger Things (we’re not caught up yet so please, don’t spoil it for me). Suddenly, I felt an itch on my upper left arm. Like anyone would, I scratched it. But then it got more intense. Like, really, seriously itchy. I rolled up my sleeve so I would be able to scratch with greater ease, and was surprised to feel some bumps emerging on the itchy patch of skin.

I peeled off my sweater and stepped into better lighting in the bathroom so I could examine the area better. There was a large patch of red, inflamed skin on my arm that was covered with bumps that looked like hives. I was dumbfounded. Unsure of what triggered the hives, but alarmed by how swollen and irritated my arm looked, I shot a couple text messages to my EMT father and nurse best friend, who both advised me to get my arm looked at stat.

HUGGING THE CACTUS - A T1D BLOG
Stranger things have happened in my life with diabetes (just had to sneak a pun in there)

And that’s how I found myself in a crowded emergency room, tearful and furious at my body, on a random weeknight. Part of me was relieved that my diabetes didn’t seem to have anything to do with this (but see my recent post on Metformin and you’ll understand that I have some theories about that being the cause). But the other part of me was so pissed off that my body just couldn’t be normal for once. I felt that my body was lashing out at me like an unruly child, declaring its anger towards me in the form of an incredibly itchy, ugly rash. I couldn’t help but stew over the whole situation the entire time I waited to see a doctor.

Long story short, a dose of Benadryl cleared up the hives within an hour. The doctor was unable to determine a cause, since I couldn’t think of anything new introduced to my diet or any new scents/lotions/detergents used in my household. And insect bites got ruled out because the doctor was certain that a bite would be more localized and not spread in a giant patch on my arm. I’m still perplexed at how it happened, but I guess I just have to make peace with the fact that it did and be grateful for 1) making a total recovery from it and 2) not experiencing any issues with my blood sugars as a result of it.

When diabetes isn’t responsible for an ER trip, it means that it’s okay to still be upset about it, but also glad for not having to explain the intricacies of diabetes to every doctor and nurse that walks into the room…because I can’t think of a single PWD that would ever feel happy about taking on that happy task.