I feel defeated when it comes to just about every aspect of my life with diabetes as of late.
I feel defeated in terms of my blood sugars lately: I’ve experienced too many highs due to an ever-present fear of low blood sugars.
I feel defeated in terms of what my A1c reading might be at my endocrinologist appointment next month: I don’t even have a clue as to what the value might be right now, but my intuition is telling me that it’s higher than I want it to be, which sucks because I’ve tried hard to keep it down.
I feel defeated in terms of my diabetes supplies: I’ve had to pay a lot more money than I ever anticipated for them. I turned 26 less than 6 months ago and I’m having trouble imagining paying so much money for my supplies for the rest of my life, let alone the rest of the year. I know I’m not alone, but knowing that others are struggling (in very different and similar ways) makes me feel worse.
I feel defeated in terms of this blog: I feel like nobody else really cares about it except me. This is fine in some ways because one of the reasons why I write this blog is because it’s a form of therapy for me. But in other ways, this makes me sad because another reason why I started Hugging the Cactus was to make a positive impact, somehow, on the diabetes community that I love so much. But it’s hard. There’s many bigger, louder, more important voices in the online space that simply have a better reach than me. These people know how to connect with their audience in a way that makes a more profound impact than I ever could. Lately, I’m asking myself, “why bother” a lot more than I’m saying to myself “keep it up”.
I’m not writing about my diabetes-related feelings of defeat – my dia-feat – to garner sympathy or attention. I’m just trying to keep it real. It’s a little different than what I would consider conventional “diabetes burnout” to be, because I do still have that desire to thrive and do well with my diabetes management…but things just aren’t quite going my way.
I know that other people like me feel this way sometimes.
And I know that the dia-feat won’t last forever.
But it is important for me to acknowledge it now, so I can start figuring out how to dust myself off and pick myself back up soon.
C’mon, Molly. Get it together. It’s not called cryabetes. I stared at myself in the bathroom mirror, giving myself an internal pep talk to keep the tears from flowing down my cheeks. I felt a little uneasy on my feet, so holding a steady gaze proved to be challenging after a few moments.
Why was I on the verge of an emotional breakdown? It was all my blood sugar’s fault, of course. For about an hour, I’d been hovering in the upper 60s to lower 70s. There are far worse blood sugar ranges to fall in, but I’d been feeling the classic symptoms of a low for that entire span of time – and it was really testing my fortitude.
My self-talk was fruitless; within seconds, the first few tears escaped from my eyes. It wasn’t long before a couple tears turned into full-fledged bawling. Alarmed by my outburst, my boyfriend tried to calm me down (he was aware of my low blood sugar situation) and attempted to use humor to get the crying to stop. Very quickly, he discovered I was a bit beyond that and that it was best to just let me be sad.
I was sad because I was tired and wanted to go to bed but it didn’t feel safe for me to sleep just yet. Safe to sleep. Can you imagine not feeling safe enough to fall asleep, even in your own bed surrounded by your own blankets in your own room, with your partner nearby?
So the tears came and went because, even though I tried my damnedest, I still felt so out of control in this situation. Not knowing how long it would take my blood sugar to come back up to a level that I felt safe to sleep at, not knowing what exactly caused this predicament in the first place, and not being capable of being mentally stronger than my diabetes all in that moment in time got to the best of me.
So sure, diabetes isn’t called cryabetes. But that doesn’t mean my emotional lapse – or any emotional lapses related to diabetes – wasn’t warranted. Crying can be healing, and in this moment in time, it was the only thing, oddly enough, that could make me feel a tiny bit better.
Friends, I am pleased to share that I have been nominated for a WEGO Health Award. My blogging for Hugging the Cactus has qualified me to be a Patient Leader nominee for the “Best Kept Secret” award, which is very exciting to me! What’s more, if I advance to the finals round, I may be able to win a trip to Las Vegas for the HLTH conference in October. This would provide me the opportunity to be around other Patient Leaders who, I’m confident, I could learn so much from, as well as the rare chance to attend a health-focused conference based on merit rather than cost.
What exactly are the WEGO Health Awards? They were created to recognize and honor those who strive to make a difference in the online health community. In the past few days, I’ve scrolled through the growing list of nominees who are advocates for all sorts of conditions, from anemia to ulcerative colitis. It’s quite eye-opening to see just how many health topics inspire individuals to spread awareness via social media, blogs, podcasts, YouTube channels, and more. And it truly is an honor to be listed among these incredibly inspiring nominees.
If you feel that I deserve to move on to the semi-finalist round, please follow this link to endorse my nomination. By clicking the link, you can view the other nominees and their profiles, which I strongly encourage so you can find out for yourself the sheer volume of skilled storytellers out there. Plus, you never know, you might just discover someone who you can relate to or who inspires you. After all, in a world of chronic conditions that can feel so isolating, isn’t it always a comfort to find out that you’re not alone?
When it hasn’t been your day, your week, your month, or even your yeeeeear!
*Ahem* Oh! Pardon me, I was just singing that line from the Friends (yes, the TV show, of course) opening credits theme song. It describes how I’ve been feeling lately – maybe not for a full year, but most certainly this week.
It all started with high blood sugars. Not just any kind of high blood sugars, but the inexplicable sort of numbers that were happening for no apparent reason. Running temp basals, bolusing, stacking, drinking tons of water, testing for ketones, increasing activity levels, and reducing food intake were all steps that I took in order to combat the highs. But still, it seemed like every time I put food into my mouth, my blood sugar would jump up way too high, even though I was aggressively administering insulin to cover it. I was taking almost double what I should’ve needed to take, with less than stellar results.
I was dumbfounded. And angry. And incredibly stressed over it.
Ah, stress…the possible culprit?
I’m still not sure, but it seems to be the likeliest possibility. I’ve been running around like a mad woman since I returned to Massachusetts for a two-week visit. I’ve been busy planning my cousin’s bridal shower, meeting up with family and friends, going into work at the office Monday-Friday, contending with other health issues (scratched corneas…don’t ask), and calling various companies for health-insurance-related issues. I’ve had little time for myself, so it really isn’t a wonder that stress could be to blame for my hyperglycemic patterns.
That, and my tendency to forget that haste makes waste. Let me present to you the following photo:
Yep, that’s little old me at my work cubicle, pointing out my barely-hanging-on pod. In my hurry to get to work and start my day, I had removed my tote bag from its spot on my shoulder in a rush. The force from the movement peeled half of my pod up and off my arm, leaving the cannula (mercifully) still stuck under my skin. I was furious at myself because the pod was less than a day old, and I couldn’t bear the idea of tossing it with more than 100 units of precious insulin left inside it. So I did what I could to cobble it back onto the site on my arm with copious amounts of medical tape, cursing myself for being so careless and exacerbating my stress levels.
There’s a lot more I could say and explain when it comes to the level of tough this week has been, but I think it’s time to move on. Life with diabetes means good weeks and bad weeks. The good weeks are to be celebrated, whereas the bad weeks ought to be acknowledged for how physically and emotionally challenging they are, but also for the lessons to be learned from them.
With that said…
It’s been a tough week, but a new one’s right around the corner and I’m determined to make it a good one.
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.
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.