This post originally appeared on Hugging the Cactus on June 18, 2018. I wanted to republish it today because my dad (and all fathers of T1D children) should be recognized for everything they do for us. I also wanted to give my dad a little extra shout-out, as this is the first Father’s Day that I’m not there to celebrate him in-person.
Father’s Day was yesterday, but as I did the day after Mother’s Day, I want to use today’s blog as an opportunity to express my appreciation for dads: Namely, my own father.
Besides being the family patriarch, my dad is a firefighter/EMT. He makes his family feel safe with his emergency preparedness knowledge and skills. He also deals with his diabetic wife and daughter on an almost-daily basis, which warrants, at the very least, a ginormous golden trophy with his name engraved on it in fancy script.
That’s because he sees the ugly side of diabetes from time to time. The side that causes blood to spurt out of mom’s abdomen when she removes a pod that struck a vein. The side that causes me to lash out, because my blood sugar won’t seem to come down from a sticky high, no matter what I do. The side that causes mom and I to lose sleep, because we’re treating another middle-of-the-night low blood sugar. The side that forces mom and I to be prepared for any and every possible diabetes scenario that could occur while traveling. The side that causes us to cry, because we just can’t deal with diabetes today.
And he’s there through it all.
He’s there to apply pressure and gauze to the bloody site. He’s there, feeling just as upset as I am, because he just wants my blood sugar levels to come back down, too. He’s there to make sure mom and I have enough glucose tablets or juice to bring our levels back up. He’s there, keeping us calm as we pack for our next trip and taking care of all the travel arrangements. He’s there to comfort us when we need him to, and he hates that we live with diabetes – probably even more than we do.
He’s the kind of guy who says he’d trade his pancreas with us in a heartbeat if it meant we wouldn’t have to live with diabetes anymore.
He’s the kind of guy I’m proud to call my dad.
Thanks, Dad, for helping me handle my diabetes over the years, and supporting every venture (diabetes and otherwise) that I pursue.
It’s been a minute since I wrote about my Metformin journey on the blog. The last time I posted about it, I had made the decision to stop taking it after experiencing a scary low blood sugar. That, coupled with the fact that I just didn’t feel ready to be experimenting so much with my diabetes medication, convinced me that the timing wasn’t right for me and Metformin.
Fast-forward to May 30, 2019. I had an appointment with my endocrinologist. It was a productive one, because we addressed a number of my concerns that have cropped up in the last three months. One question I had for her was whether she thought I should give Metformin another shot.
She thought that I should. We went over the benefits: it’d make my insulin more effective, thereby fighting back against my current insulin resistance and reducing my total daily intake. With less artificially-made insulin in my system, I may be reducing my risk for cancer (according to studies she’s read), and I may also shed a few of the pounds that I’ve been struggling to lose.
By the time of this appointment, I was feeling frustrated with the amounts of insulin I was using each day. Ever since I got off my parents’ health insurance plan, I’ve been super conscious about my supply of insulin as I try to figure out how I’ll afford it under my new plan. And it hasn’t been easy. So in an effort to reduce my overall insulin use, I decided it was time to give Metformin another go.
I’m more cautious this time around. My doctor and I talked about my fears and she helped me come up with a plan to reintroduce it to my diabetes care and management routine. I’m starting to take less insulin at dinnertime and I’m running a temp basal overnight to see how my blood sugars fare. We’re playing it safe by somewhat dramatically reducing my dinnertime insulin-to-carb ratio, but I’d much rather do that than be overly aggressive.
It’s only been about a week since I’ve started the new regimen. That’s not enough time for me to attest to whether or not I’ve adjusted to it, because I deliberately skipped taking Metformin on a couple nights in which I knew I’d be imbibing alcohol…again, it’s all about being smart and not introducing too many variables at once. We’ll see how it goes. Until Metformin update #3, that’s all I’ve got for now.
“Yo, I don’t mean to be rude, but what’s that thing on your arm? Looks pretty cool.”
I turned around to face the stranger who was looking at me and asking me this question. It was well after midnight and we were on the rooftop of a fairly crowded bar. It was a balmy, summery night and I was enjoying the atmosphere with my boyfriend and my best friend. I’d had a few drinks over the course of the night, but judging by the state of everyone else on the rooftop, I was probably more sober than most of them.
I could’ve answered his question in a scolding manner; it wasn’t a “thing”, it was a device that keeps me alive.
I could’ve totally dismissed him and told him to mind his own beeswax, because really, it is sort of rude to point out something on another person’s body.
I could’ve lied and told him it was something that it’s not to get him to stop bothering me.
I could’ve launched into an educational breakdown of what an insulin pump is and why my OmniPod looks the way it does.
I could’ve done any number of things, but instead I decided to say, “Oh, this is my insulin pump. I’ve got it decorated right now with a picture of a lighthouse because I like adding some style to it.” I smiled at him as a way of reassuring him that I really didn’t care that he was asking me, because I didn’t.
My straightforward answer seemed to please this random man. He told me again that he thought it was cool, and then we chatted a bit about where the lighthouse is and discovered we both have a connection to Massachusetts. Within a few brief moments, the conversation was over as we went our separate ways.
It was a perfectly harmless interaction that could’ve went a number of different ways, but to me, it’s all about context. This guy was just asking out of curiosity, and I truly don’t think he was trying to be rude about it. So I answered his question succinctly but good-naturedly, because I felt that was the only way to go about it in this busy party environment. Plus, let’s be real here…had I delved into a discussion about diabetes and devices, this drunk man probably wouldn’t have digested a single detail of my description. (Ahh, I love alliteration.) And another important point? He was damn right, my pump did look cool because of the lighthouse sticker!
But man, how much simpler it’d’ve been if I’d just been wearing my “THIS IS MY INSULIN PUMP” sticker on my pod that night.
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?
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 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.
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.
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.
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.
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.
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.