What Would it be Like to Have Diabetes in the Wizarding World?

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I’m a Harry Potter fan. A major one. I attended the midnight release book parties. I saw every movie in theaters. I’ve dressed as Hermione Granger for Halloween on more than one occasion. I’ve been to the theme park in Florida, I’ve read the books a countless number of times, and I’ve even written fan fiction before. So maybe I’m a little bit more than a fan…I’m an ardent enthusiast.

Even though the last Potter book came out years ago, I still indulge in the wizarding world somewhat often. One day, I was thinking about it and how nobody in the books ever suffered any serious maladies (okay, having all of your bones removed by your Defense Against the Dark Arts professor or getting petrified by a basilisk snake or Splinched when Apparating are all pretty significant conditions…but bear with me here). None of the characters had anything chronic, like arthritis, or Crohn’s disease, or type 1 diabetes. And one might make the argument that it’s the effing wizarding world…why couldn’t magic be used to cure any of these illnesses?

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My response to that question would be: How come Mad-Eye Moody had a fake eye? Couldn’t a new, working one have been magicked into his eye socket? (Same thing goes for his wooden leg.) George Weasley lost his ear, thanks to a Death Eater – how come it couldn’t be restored onto his head? Dragonpox, Spattergroit, and lycanthropy are all serious conditions in the books that, if curable, weren’t easily healed. Particularly lycanthropy, otherwise known as a condition in which a person transforms to a werewolf. The books specifically said there was no cure for this; only Wolfsbane potion could be drunk by the affected person to ease the transition from human to werewolf.

So obviously, I think that lycanthropy = T1D, and Wolfsbane potion = insulin in this hypothetical comparison/scenario. That being said, life with diabetes in the wizarding world as I’ve imagined it would be a little something like this…

  • Diagnosis would take place at St. Mungo’s Hospital for Magical Maladies and Injuries. Madam Pomfrey would be on-hand to learn how to help the affected student.
  • Pumpkin juice and butterbeer are definitely the best/most preferable ways to bring up a low blood sugar.
  • Honeydukes, the confections shop in Hogsmeade, would offer sugar-free confections that tasted so wonderful that I’d forget they were sugar-free.
  • Insulin would be administered in a much less painful and invasive way. Perhaps Professor Snape would let me brew some potions for doing so in class?
  • Quidditch would be the ideal form of exercise/would help keep my blood sugars in check.
  • Instead of Express Scripts, I’d get my medications via Owlery Express – my very own Hedwig-esque owl would deliver them to me. And they’d cost no more than a Knut (the lowest value coin in the wizarding world).
  • In Charms, I’d learn how to calculate the carbohydrates in my food with just the wave of my wand.
  • My Care of Magical Creatures class would introduce me to a hot-pink colored pygmy puff who would be the magical equivalent to a diabetes alert dog – just with a touch more inherent as opposed to learned knowledge about diabetes.
  • I’d learn all about Banting and Best in Muggle Studies.

Well, what are your thoughts? If you’re well-versed in the PotterSphere, what would you add to my bullet-point list? Drop a comment below…trust me, it’s actually incredibly fun to imagine a world where diabetes is a bit more tolerable, especially one so fantastically magical.

 

I Dos and Don’ts: My Tips for Attending a Wedding with T1D

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I can always count on diabetes to make life’s most joyous occasions just a bit more challenging…so I shouldn’t have been surprised when my diabetes threw several curve balls at me on my cousin’s wedding weekend.

There was the moment at the rehearsal dinner when I stood up to get something and hit my leg against a chair, literally knocking my pod off my thigh. (But I didn’t even realize it for another 20 minutes.)

There was the moment later that night, after the rehearsal dinner, that I discovered my blood sugar was high and that my mealtime dinner bolus probably was never delivered.

There was the moment the next morning that I realized my breakfast options were limited to a giant, carb-y bagel or a massive, sugary blueberry muffin.

There was the moment when I was with the bridal party – applying makeup, styling hair, and trying to calm the bride down – that it hit me that I had no idea what to do with my backpack (a.k.a., my diabetes bag) during the ceremony, as I had to be standing up there with the other bridesmaids during the vows.

There was the moment I psyched myself out big time by wondering what the hell would happen if I passed out in the middle of the ceremony in front of all of the esteemed guests.

There was the moment I went a little too overboard on drinking Prosecco at the reception…and a few more cocktails at the after party.

There was the moment I woke up the next day with a high blood sugar and hangover from hell.

Needless to say, there were quite a few diabetes “moments” over the course of an otherwise beautiful weekend. As a result of them, I’ve decided to document some wedding dos and don’ts for myself, as this won’t be the first time this year that I’m a bridesmaid in someone’s wedding. Here’s my unofficial roundup.

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Showing off my decked-out pod at the wedding reception.

Do have plenty of back-up supplies. I got lucky this time around because my parents were a phone call and short car ride away from me when my pod fell off. I should’ve been carrying insulin and a spare pod on me, but at least it was within my mother’s reach at the hotel room.

Don’t sweat the small stuff. Things happen, and I’ve got to learn to accept them more quickly so I can better adapt to a situation. It took me awhile to forgive myself for the pod snafu at the rehearsal dinner, and if I hadn’t snapped out of it, then it could’ve ruined the night for me.

Do try to plan meals when possible. I knew that I should avoid a high-carb breakfast on such a busy morning, but I can’t resist a blueberry muffin, especially when it’s one of two breakfast options I had. I wish I’d thought to bring food that had accurate carb counts on it so I could’ve had more predictable blood sugars throughout the day, but I did come back down from the sugar-induced high relatively promptly.

Don’t forget that family and friends are willing to help. My “problem” with my backpack was solved by handing it off to my boyfriend about 30 minutes before the ceremony started. I didn’t miss any photo opps with the bride and bridesmaid during the hand off and I felt better knowing it was in good care.

Do remember that time flies. I had to keep myself in context; after all, I was standing up in front of the guests for less than 30 minutes. I knew there was relatively little insulin in my system and that I was starting to level out somewhere in the 100s by the time the ceremony started. The odds of me passing out were slim, and I needed to give myself that reality check.

Don’t forget to drink plenty of water. Duh, that’s drinking rule #1! I’m embarrassed to admit that I maybe had two glasses of water during the entire reception and after party. It’s not like there wasn’t water available, so I don’t know what I was thinking. But I do know that I was incredibly lucky to hold onto stable blood sugars well into the night, despite my lack of hydration.

Do have a plan for hangovers. Sometimes, they happen, and they’ve got to be dealt with swiftly. After some consultation with my mother, I set a temp basal to fight against my high blood sugar and downed glass after glass of water. By early afternoon, I was feeling much better. And even though I had a bellyache, I didn’t yak, so I suppose that’s a silver lining.

And one extra “do”…do have fun with diabetes devices! I decked out my pod in a Pump Peelz sticker that had an image of the lighthouse we were near on it. Sure, it wasn’t visible to anyone but me (and a few people I couldn’t resist showing), but it still made me feel extra special and coordinated with the wedding venue. Sometimes, its the little things in life.

So besides taking several valuable dos and don’ts away with me from this weekend, I’m also walking away with a wonderful first experience as a bridesmaid to a cousin who’s always felt more like a sister to me. When it comes down to it, my irritation with diabetes doesn’t matter – it’s the love and celebrations I felt all weekend long that do matter.

The $2,000 Mistake

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Have you ever received an email that made you stop breathing for a moment? Did it feel like time stood still as you blinked rapidly and tried to comprehend the meaning behind it?

It sounds like a dramatic overreaction, but imagine getting a notification from your pharmacy notifying you that your prescription would cost almost $2,000. That’s a big old chunk of change. The mere thought of paying that much for a supply of insulin makes my heart race and my palms sweat.

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I nearly keeled over when I saw this dollar amount.

I’m happy to report that this was a giant mistake; for whatever reason, my doctor’s office sent my prescription for Humalog to my local pharmacy, even though I explicitly told them that I use Express Scripts for my insulin orders. It was a total mix-up, and the approximately $2,000 was an amount that I would pay if I didn’t have any insurance coverage. I do, and though I’m not sure how much I’ll be paying for my insulin yet, I know that it can’t possibly cost this much.

I’m relieved that I was able to call the pharmacy and straighten this out without spending a cent of my money. But it was also a major wake-up call to a reality that many people are forced to face when it comes to refilling insulin prescriptions. It’s not fair. (That last sentence is the understatement of the century.) I can’t make any sense of it and I don’t know how many people have no choice but to fork over such a large sum of money on a monthly basis in order to live. Thoughts of those individuals and their dire situations scare me far more than navigating the world of health insurance ever could.

While I didn’t appreciate the mini heart attack this email triggered, I guess I am glad that it alerted me to the fact that I’m going to have to be aware of things like this going forward. As I figure out my health insurance costs and coverage, I anticipate more confusion, surprises, and expenses…but hopefully I can also expect/experience a pleasant discovery or two along the way.

Trying to Stay in the Loop with DIY Diabetes

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I can’t remember exactly when I heard of “DIY diabetes”, also known as “looping”. It may have been at a conference a few years ago, or maybe I saw something about it on social media. Either way, it seems to have totally blown up as more and more people with T1D are looping.

TRYING TO STAY IN THE LOOP WITH DIY DIABETES
Are you a Looper?

Before I talk about it more…a brief definition of looping. Loop refers to a kind of automated insulin delivery system. According to what I read about it on diaTribe, Loop systems are open-source and DIY, meaning that T1D Loopers download an app for the iPhone that communicates with a device that also communicates with compatible pumps and CGMs.

If you’re confused, don’t worry – so am I. There’s a number of moving pieces involved with Looping that make it daunting and difficult for me to keep up with as the technology changes. But the ultimate goal of Looping is what has me interested in it. Looping is supposed to help improve time-in-range, particularly overnight, because it does a lot of the thinking for you and ultimately makes life with diabetes easier. And I’m all for that.

Looping’s been popping up on my social media a lot lately because at the end of April, the geniuses behind Loop announced that compatibly with the OmniPod for the first time. (Previously, Looping was only available to Medtronic folks.) On what feels like a daily basis, I notice more people on my social media platforms – particularly Instagram – who are Podders that have made the decision to start Looping. The common denominator with many of these individuals, besides being Looping Podders (sounds like a wacky band name) is that they’ve found great success in doing so. It seems like each person spends 90% or more of his/her time in range, encounters fewer low/high blood sugars, and wastes less time worrying about diabetes in general.

All of that sounds too good to be true. Of course my interest is piqued by such incredible results, and of course I’d love to dive right into Looping and see whether it’s a good fit for me. But the reason why I don’t is simple…I just hesitate to trust new technology.

Technology can fail. Plain and simple. All operations for Looping with the OmniPod take place on the iPhone. That means that the PDM is rendered useless. What happens if I lose my cell phone? What if the battery dies when I need to bolus? What do I do when I upgrade to a new phone? There are so many questions I can think of related to the phone issues alone, never mind any other potential problems. Put simply, the unknowns – the “what ifs” – terrify me so much that I can’t help but be skeptical of Looping.

But this doesn’t mean my interest goes away. My curiosity about Looping is stronger than ever. The DIY element is frightening, but the rewards could be greater than the risks.

The only thing I know for sure is that I won’t even attempt to Loop until I have a conversation with my endocrinologist about it. Together, we make decisions about my diabetes care and treatment that we both feel are safe and right for me. I’d love her opinion on Looping to see how much she knows about it and whether she has any patients who use it. Until I talk to her and gain more information from other Loopers, it’ll just be something that I cautiously admire from afar on social media.

Starting Off on the Wrong Foot

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“How are you today, ma’am?” The man behind the Dunkin’ Donuts counter smiled and looked at me expectantly, as I started back at him blankly.

I wasn’t sure how to answer. My mental state wasn’t great, that was for sure. I’d just come from a visit to a walk-in clinic, where I’d had X-rays of my foot taken to see whether or not it was fractured.

The previous 24 hours had been a bit of a whirlwind. I’d worked and gone to my first-ever kickboxing class, which was an awesome experience. I’d had dinner with my partner and started playing video games soon after as a way to unwind after the long day. That’s when pain in my foot flared up, suddenly and significantly.

Could I have injured it in the kickboxing class, without even knowing it? Was I overdoing it on exercising, in general? How and why did the pain just start up like that? Almost immediately, I plopped myself down onto the couch with an ice pack and extra cushions, hoping that I could stop the pain as quickly as it started.

No such luck. I went to bed early that night, but the pain was so severe that sleep was virtually impossible. I tossed and turned for hours, wondering what the hell was going on and coming up with a plan to get it checked out A.S.A.P.

That’s how I found myself at a walk-in clinic, a little over 12 hours after I first felt the pain. I was evaluated by a nurse practitioner who told me that “the likelihood of a fracture was low” (thank goodness) and that it was “probably tendinitis.” I was given instructions to rest, ice, and elevate my foot for the weekend, and take non-steroidal anti-inflammatory drugs (otherwise known as NSAIDs, like Ibuprofen or Aspirin) as needed.

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I’m trying to put my best foot forward as I deal with this injury.

That meant hours and hours of being sedentary.

That meant no exercise of any kind – I even had to keep walking at a minimum.

That meant my spirits were crushed.

I was glad that it wasn’t worse, and proud of myself for not waiting to seek medical treatment. But that didn’t mean I was thrilled with the outcome. Basically, I had to take the wait-and-see approach. Time will tell how long the pain lasts, and I can’t stand not knowing. I also can’t stand not being able to be active. Daily exercise is a key element to maintaining good blood sugars. Sitting around idle doesn’t do my diabetes any favors, but it’s not like I had any other choice.

I left the clinic, trying to process this information. This certainly wasn’t the way I wanted to kick off the long Memorial Day weekend. It definitely could have gotten off on a better foot. (Okay, okay, I’ll stop with the puns.) I found myself at a nearby Dunkin’ Donuts minutes later. I hobbled in, hoping that an iced coffee might lift my spirits somewhat.

I blinked, bringing myself back into the moment, and smiled wryly at the Dunkin’ cashier. “I’m okay,” I said to him. It wasn’t just a response to his question, it was also a reassurance to myself. I’m okay and I will be okay. I won’t let this get me down.

Diabetes Knows

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Diabetes knows.

Diabetes knows me better than anyone or anything on this planet.

Diabetes knows how to push all of my buttons.

Diabetes knows how to make me question all of my choices.

Diabetes knows how to make me crumble in stressful situations.

Diabetes knows that I have anxiety – it’s probably the cause of it – and takes full advantage of that knowledge by attacking me when I’m vulnerable.

Diabetes knows that it gets in the way when I’m trying to do the things that I want to do…and it doesn’t care.

Diabetes knows that I don’t handle it well when it decides to rebel against my insulin, my diet, my exercise, and all of my efforts to appease it.

Diabetes knows that I’m tired of it.

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There’s a lot that diabetes knows.

But diabetes also knows that I’m not quitting.

Diabetes knows that it won’t break my spirits.

Diabetes knows that even on my worst days with it, I’ll always bounce back and recover.

Diabetes knows that I’m stronger than it.

Diabetes knows that I will never be afraid to tell it who’s the boss, that ultimately, I control my body. Not it.

Diabetes knows I’m always here to remind it of that fact.

Diabetes knows.

 

4 Things That Make Traveling with Diabetes Easier

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Throughout June and July, I’m going to be a travel fiend. I’ve got plans to travel by plane at least twice, and by car countless times. My trips will vary in length from just a couple hours to eight or nine hours. My head’s spinning just thinking about it, but I’ve got to get it together enough to think about how I can make traveling with diabetes a little bit easier. Given my past travel experience, I can think of four things that are absolute musts for me to take on any trip…

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Some of my favorite things to have with me when I travel.

4. Packing cubes
I always thought packing cubes were a total gimmick…until I actually started using them. I got a set of four for Christmas and they’ve really turned me into a much more efficient packer. They help me visualize the space that will be taken up in my suitcases, and what’s even better is that one of the cube’s is the perfect size for my diabetes supplies. I can fit 15-20 pods, a handful of CGM sensors, various device chargers, alcohol swabs, IV prep wipes, and more into the compact little cube. It’s so much better and more organized than the lame-o gallon-size Ziploc bag that used to store all my diabetes supplies for a trip.

3. My Myabetic backpack
I don’t know how I ever traveled with a purse as opposed to my Myabetic backpack. I can fit way more things into my backpack than I ever could put into my purse, and I love that there are specific compartments in the backpack for certain diabetes supplies. I know exactly where things I might need during a flight are stored, eliminating that panicky feeling I used to get when I would dig frantically through my purse in order to find my tube of glucose or my PDM.

2. Snacks and water
This is an obvious one. In my opinion, traveling with diabetes shouldn’t even be attempted without a refillable water bottle or at least two emergency-low-blood-sugar snacks. Even though it’s basically diabetes 101, I’m guilty of going places without water or snacks…and I’ve always regretted it. There’s not much worse than being in an unfamiliar place and unsure of where the closest food and water is located, especially when dealing with a blood sugar crisis.

1. My CGM
The most important tool in my travel kit is, without a doubt, my CGM. More specifically, my receiver is key, particularly when I’m traveling by air. I am religious about turning my phone off for the duration of a flight (just a weird paranoia thing, don’t judge me), so my receiver becomes my go-to whenever I want a status update on my blood sugar without taking out my meter and kit. It helps me handle any weird blood sugar spikes and drops that occasionally happen when I travel, and it provides me with a peace of mind that makes traveling with diabetes much more bearable.

 

Brunching with ‘Betes

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Confession: I’m a brunch lovin’ millennial who also really hates brunch.

The reason I hate brunch (besides waiting all morning long to eat my first meal, I get hangry) is that it annihilates my blood sugars.

Breakfast Alley
It’s not uncommon for me to spend several hours after brunch trying to correct a high blood sugar.

It probably has a lot to do with the aforementioned fact that the timing of a typical brunch is typically not favorable when it comes to my basal rates and insulin-to-carb ratios. On a normal weekday, I’m used to eating breakfast within an hour of waking up. My body and my blood sugars are very much so accustomed to this pattern, so when it’s interrupted, it shouldn’t be any wonder why they don’t respond well.

It’s not that I don’t try. I do everything I can to offset the lateness of a brunch meal by running a temp basal and ordering as low carb as I can. And it seems to work well, up until I get up to leave the table and head home. Often, I find myself correcting two or maybe even three times after brunch, and it’s extremely annoying.

Maybe I could help curb spiking blood sugar by ordering just one mimosa, as opposed to two or even three (or just skip drinking them altogether, but seriously, I’ve had enough mimosas in my life to know how to properly bolus for them). Maybe I could insist to my friends that brunch plans should be earlier and force all of us to wake up early on a weekend morning. Maybe I could skip brunch plans altogether.

But that would be accepting defeat. Just like I refuse to let diabetes ruin any aspect of my life, I won’t let it stop me from enjoying brunch with whomever I please. I’ll figure out how to avoid post-brunch highs, I just know it. It’ll just take a little more time and patience…and several more brunch outings. Yum.

Why It’s Important to Remember That The Doctor Isn’t Always Right

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We should always do what medical professionals tell us to do…right?

I mean, why wouldn’t we? They’ve gone through many years of extensive training. They’ve got the education and degree(s) to prove their medical expertise. So why would a patient question a doctor or a nurse when they’re telling them to do something that will improve the patient’s health?

Well, a patient might question a medical professional’s advice when it seems contrary to everything else that the patient’s been told by other, trusted members of their healthcare team.

This is exactly what happened to me when I went to see my primary care doctor a few months ago.

Actually, more specifically, I saw a nurse practitioner who works at my primary care doctor’s practice. I made an appointment with the office because I’d been experiencing some wheeziness that made me think I might have asthma that couldn’t reliably be treated with a rescue inhaler (which is all that I had) on its own. I figured it’d be smart to talk it over with my doctor, or at least someone at his practice, to see if I should start treating my symptoms with another kind of medication or therapy.

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As patients, we should always do what the doctor says…right?

My appointment barely lasted 20 minutes. I met with a nurse practitioner who I’d never seen before. I explained how I’d been wheezing the last several days, and how it got worse when I went to lie down in bed at night. Before I could get another word out, she asked me if a rescue inhaler was all I had to use in these situations. I said yes. She proceeded to tell me that rescue inhalers aren’t designed for daily use because, as the name implies, they’re for emergency situations. Then she started telling me about a steroid that she thought I should begin to use twice daily.

I cringed at the word “steroid” because I know that they don’t interact well with my blood sugars. Steroids can make blood sugars go high rapidly, and it can take hours for blood sugar to come back down to normal levels. I told her this, and she shrugged off my concerns by telling me that the inhaled steroid would be going directly to my lungs, not my entire body like a typical steroid. I remember nodding uneasily and asking her how to use the steroid – I wasn’t going to leave the room until I had a satisfactory amount of information on this new, unfamiliar drug.

She told me I’d take it once in the morning and once at night, before brushing my teeth. Apparently, I would need to be careful and remember to rinse my mouth out with water immediately after administering the medication in order to prevent…thrush. (If you’re unfamiliar with that word, it has something to do with oral, yeast, and infection…A.K.A. something that sounds like a nightmare.) That’s when I really became alarmed. I told her that people with T1D are already more susceptible to that kind of infection, and wouldn’t it be a bad idea to even risk it by taking this steroid two times a day? And again, she essentially disregarded my protests and told me I’d be fine as long as I remembered to rinse. Then, she sent the prescription to the local pharmacy and left me in the exam room in a confused daze.

I went to pick up the prescription, but I never used it. I decided to trust my judgment and avoid a steroid that seemed like it would cause more harm than good. I also figured that since the weather had abruptly gotten cold, then perhaps my asthma symptoms would subside before long; in the meantime, I could use my rescue inhaler as necessary. And you know what?

I was right. My breathing was normal again in a matter of days, and I only had to take a few puffs from the inhaler when it was all said and done. My decision to take my health in my own hands was further validated when I went to go see my allergist soon after this ordeal. I told her all about it as we ran through the list of medications that I regularly take. She was incredulous that I was prescribed the steroid in the first place, seeing as my asthma is practically non-existent. To quote her, “You’re (meaning me) already sweet enough, you don’t need this steroid or a risk of thrush!”

That remark alone sealed it for me: I did what I thought was best because I knew I was capable of making a decision about my body; nobody knows myself better than me…even a medical professional.

5 Things That I Don’t Mind About Having Diabetes

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I thought about how I should title this blog post many, many times. It didn’t feel right to say “5 Things I Like About Having Diabetes” or “5 Things That Make Diabetes Okay”…because I will never like having diabetes, and I will never be okay with it.

But that being said, after living with it for 21 years, there are some “perks” to it that have made it somewhat more bearable. Okay, a LOT more bearable. Besides insulin, diabetes technology, and the like, there are five things that I came up with that make diabetes suck less for me.

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First, and most obviously…diabetes has brought wonderful friendships into my life. I’ve written about these friendships many times before and I’m sure I’ll continue to do so in the future, because they’re invaluable to me. I have some regrets about not realizing the importance of peer support when it comes to diabetes when I was younger, but maybe I figured it out in adulthood because some part of me knew that was when I would need it the most.

Second, diabetes has made me stronger. I won’t downplay the fact that it increases my anxiety and stress levels…but I also can’t deny that the trials and tribulations of life with type 1 diabetes has made me a tougher person.

Third, diabetes has forced me to be an obsessive planner. I do wish that I could live a bit more spontaneously sometimes, but honestly, I’m pretty proud of my ability to think ahead and plan well in advance of things. These planning skills have translated to other aspects of my life, too – I wasn’t on the party planning committee at work just for the heck of it!

Fourth, diabetes has taught me so much about nutrition. I’ve been reading nutrition labels before I could read actual books. I’ve met with nutritionists at various points in my life to learn how to eat a balanced, healthy diet that consists of the right amount of carbohydrates for me. I’ve educated myself on the power of the glycemic index and how it impacts blood sugar. Without diabetes, I’m not so certain that I’d have such a clear understanding of how different foods affect my entire body. I’m grateful to know so much about nutrition, because I think it makes me a healthier person, overall.

And fifth, diabetes has lead me to several interesting (and in some cases, compensated) research opportunities. Yes, you’ve read that correctly – my diabetes has allowed me to be a research study participant in a handful of studies and I’ve gotten paid for my involvement. The amounts have varied over the years – anything from a $5 Amazon gift card to a $200 stipend – but it’s not just getting paid that makes research participation worth it to me. It’s also knowing that I could be making a difference to the larger diabetes community. For instance, offering detailed feedback on a diabetes device or product might help make it better in the future, and if that means I spend an hour on the phone answering questions, then of course I’ll do it.

In times of diabetes hardship, it’s important for me to remember these five things. Diabetes was a shit card in life that I was dealt, but it’s not the worst thing that could happen to me. Reminding myself of these bright spots help to make life with diabetes a little bit better.