Oops! My CGM Did it Again

Oh baby, baby
Oops, my CGM did it again
It played with my BG, got lost in the graph
Oh baby, baby
Oops, my CGM thinks it’s right
That it’s control is tight
I’m not that gullibleeeeeeeeeee…

Ahem, oh! Excuse me for changing the words to Oops! I Did It Again, a real Britney Spears banger that I listened to over and over again in my younger years. But it just seemed appropriate because it describes the exact kind of betrayal I got from my CGM – at the tail-end of a very long day in the car, no less.

Oops! My Cgm did it again

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Learning to be Chronically Chill

I’m not sure that I’ll ever fully be at peace with my diabetes.

I have days when I hate it a little less, sure. I even have days when it doesn’t bother me at all. But true acceptance of my diabetes? I used to think I had it…not anymore. In 22 years, there’s just been too many times that I’ve detested every aspect about life with diabetes: the painful shots/needles, the constant planning, the many doctors appointments, the countless hours of sleep lost, the amount of money that goes into caring for it…the list could go on and on.

I know, I know…this all sounds extremely negative. It’s a little unlike me. But let me tell you what, instead of forcing myself to unequivocally accept my diabetes, I’m learning how to be what I’ll call “chronically chill” with it. It’s a bit of a play on words, you see. Diabetes is considered a chronic illness (I prefer to think of it as a condition; to me, “illness” has an ickier connotation). By definition, the word chronic means long-standing or permanent, and I’ll always have diabetes. So it’s about time that I start to be chronically chill – persistently cool, relentlessly alright-fine-I-get-it-you’re-not-going-away-any-time-soon – with my diabetes.

Learning to be Chronically Chill
Me, being my chronically chillest, on the beach.

To me, this is different than accepting it. Others might disagree, which is totally fine, but I think that accepting diabetes means hugging it warmly, with open arms. I don’t want to do that. Rather, I want to get to a place where I can be just…fine with my diabetes. Just let it coexist with me. I never want it to get to the best of me, but I also don’t want it to think that it can stay with me forever. I guess it’s the optimist in me that still thinks a cure is right around the corner.

How am I going about this process of being chronically chill? I’m taking it a day at a time. I’m trying to not get bogged down so much by the small things. I’m trying (and this is super mega hard for someone like me) to come to terms with the fact that I can’t have control over everything in my life. I’m trying to focus more on things like time in range versus my A1c. I’m trying all of this at once, and I believe that it will help me achieve the chronically chill status I’ve described.

And if the process goes more slowly than I want it to, I’ll just refer to the above photo of me on the beach from time to time…because it’s hard to find a place where I’m more chill – my most serene self – than when I’m near the sand and surf.

Doing Everything Right and Still Getting it Wrong

One of the most frustrating things about having diabetes is feeling like you’re finally understanding it, perhaps even mastering it, only for it to lash out at you and make you feel like you don’t know shit about it.

It’s when you do everything right – check and treat accordingly, eat properly, exercise sufficiently – and still get it wrong when your blood sugars don’t behave the way they should.

I really hate when this happens, but I loathe when it happens on vacation…which is exactly what happened to me last week when I was in Maine for a few days.

Things started going awry shortly after I woke up (if only I knew then that I was in for a DAY!!!). I ate breakfast and my blood sugar swiftly started to rise. But I didn’t panic, because that’s what I wanted to happen. We’d be walking all around town for part of the morning and most of the afternoon, so I wanted my blood sugar to be on the higher side so that my chances of dropping dramatically in the heat were lower. I made the right call – soon after we got downtown, I noticed a diagonal down arrow on my Dexcom app. Things were headed in the right direction…or so I thought.

Not long after I spotted the diagonal arrow, I started to feel a little low-ish. Not super shaky or anything, but just a bit disoriented. I decided to pop into my favorite candy store to fill a small bag with treats so I had something sugary to munch on that would prevent a bad low blood sugar.

Those were mistakes number one and two…not consulting with my CGM again before eating candy, and going to town on it because it was CANDY and it tasted delicious.

Doing Everything Right and Still Getting it Wrong

Within a half hour, I was rising up, up, and up. I took a small amount of insulin to correct it, not wanting to be too aggressive and risk a real low. But as I walked around the amusement park with my boyfriend and his family, I just wasn’t coming back down like I thought I would. I lingered in the mid-200s for much of the early afternoon, and by the time we stopped for lunch, I was rage-bolusing to bring my numbers down faster. I even chose a lower-carb lunch option in the hopes that it’d stave off another high blood sugar, but nope, the BG gods were not in my favor that afternoon. As we moved from the amusement park to a brewery (a drastically different change in locale, I know), I bolused once again, and then noticed that the batteries in my PDM were low.

And that actually wasn’t a problem, because I was prepared enough to have spare triple A batteries on me – thank goodness! I took the old ones out, popped the new ones in, and waited for my PDM to come back to life. And it did…but it asked me to input the month, day, and year.

Dammit. THAT’S never a good sign. I entered the information and the system accepted it, and then my pod failed immediately after, which meant that I had to ditch the brewery and the group of people that I was with to get back to the house we were staying at as quickly as possible to put a new one on.

It doesn’t get much more irritating than that.

(Later, I discovered that my PDM’s internal battery was going, and that this behavior would occur every time I replaced the triple A batteries. Needless to say, I’m awaiting a new PDM from Insulet, because it’s just not smart to continue using an aging PDM.)

By the end of this day of turbulent blood sugars and unpredictable medical device malfunctions, I was mentally beat. I felt like I’d been thrown into the roughest of ocean waters and forced to tread water for hours in order to keep my head above the surface. It’s exhausting to know that, when it’s all said and done, I was really trying to do the right things and take care of myself. I was SO DANG PREPARED with those extra triple A batteries, for goodness’ sake! But man, diabetes…just when I think I know it better than anything else, it throws me for a loop and I remember a saying from Professor Mad-Eye Moody of the Harry Potter series (of course I’m talking about Harry Potter again, don’t act surprised): CONSTANT VIGILANCE. I’ve got to be aware of my diabetes at all times. I’ve got to know how to react and when so that my diabetes will remain in my charge – not the other way around.

Diabetes Checks into “General Hospital”

Soap operas: Many people scoff at them and the heightened drama that defines them. I get it. Betrayals! Infidelity! The mafia! Murder! Secret children! Evil twins! Name a ridiculous plot point, and I can virtually guarantee that it’s been explored on a soap.

But that’s precisely why I love soap operas. They’re the epitome of escapism. They’re so bizarrely over-the-top that it can be comical. And tuning into the absurdity is the perfect way for me to unwind after a long day.

My soap of choice? Why, it’s been the same one for years; in fact, since I was the tender age of nine years old…General Hospital. In the last 17 years, I’ve (mostly) kept up with the citizens of fictional Port Charles, New York. Their wild lives fascinate me. I think I’ve always been especially intrigued by the show because it centers around…well, a hospital. As a result, characters experience a myriad of maladies, everything from infectious diseases to totally invented my-memory-got-stolen-from-me-and-it’s-all-on-a-flash-drive-that-I-can’t-access sort of conditions.

So imagine how my interest piqued when longtime character Barbara Jean “Bobbie” Spencer got diagnosed with diabetes a couple weeks ago by her doctor son, Lucas (who has type 1 diabetes, himself).

The Minimal Lists
Diabetes is on the long list of medical conditions that GH has attempted to tackle over the years.

This plot line was…interesting. And somewhat concerning to me, because by the time the story wrapped, I’m not sure how much it did to raise diabetes awareness. Let me go over the good and the bad.

The good: Bobbie is a very petite woman who was diagnosed with type two diabetes. The character was in utter disbelief over this because she thought she practiced a healthy lifestyle. I can appreciate that the writers chose to diagnose her with type 2 to make viewers aware that obesity is not the only risk factor when it comes to developing it. And speaking of awareness, the writers chose to focus on the fact that people with diabetes are more susceptible to heart conditions. This is something that I like to pretend to not know sometimes, but it really is important to not be ignorant of complications.

The bad: Very little distinction was made between type 1 and type 2 diabetes with this new diagnosis. I can imagine that viewers who are unfamiliar with diabetes might be confused by what the difference is, especially considering that Bobbie was diagnosed by her son who has T1D. I feel like that should have been better explained or clarified. I also didn’t like how the whole plot line made diabetes seem very easy to treat and manage. I’m pretty sure the only things that Lucas told Bobbie to do was get her hemoglobin tested every 3 months and remember to take her medication (no mention of what kind, whether it was an oral drug or something else). Really? Frequent blood sugar checks, doctors appointments, and structuring a new daily routine couldn’t have been mentioned?

It’s just a bit frustrating to me as a person with diabetes. Of course, I don’t know what it’s like to live with type 2, but I know all too well about what goes into managing type one. And it’s not something that can be explained in a short story arc on a show like GH. Now I’m just curious as to how long the writers will prolong the diabetes diagnosis – will Bobbie’s condition be mentioned often, or will it only be swept under the rug until it’s a convenient time, story-wise, for it to come up? Time will tell.

Sugar and T1D: Friends, Not Foes

For someone who doesn’t eat sugar…. you sure do know how to bake….damn those were good

My coworker sent this to me via instant message as a way of thanking me for the cupcakes I’d brought into the office that morning. Before 11 A.M., a dozen and a half or so “butterbeer” flavored cupcakes I’d created were devoured by my coworkers, who gave rave reviews on their taste, much to the delight of this wannabe pastry chef.

This particular message of praise, though, made me simultaneously smile and cringe: It was that comment, again. The one about sugar and not being able to eat it.

Everyone in my office knows that I have type 1 diabetes. And because I make it my mission to spread awareness of how to react in certain situations that a T1D might encounter, most people I work with know that in cases of low blood sugar, fast-acting carbohydrates (i.e., sugar) are essential as they’re the fastest way to fix a low.

Calais University
Sugar saves my life from time to time…and no, that’s not an exaggeration.

But every now and then, I’m reminded that no, people don’t always remember what you tell them about diabetes. It goes to show that there’s always room for more advocacy…which is why I write about diabetes and won’t stop talking about it to those who want to know more.

As a result, I’m constantly telling people that I can and do eat sugar; in fact, it saves my life from time to time. Maybe that’s the subconscious reason why I love baking cupcakes, cookies, and more: For a girl who relies on sugar sometimes, I sure do know that a baked good every now and then is what helps me stay alive.

And the Nominee is…Me?!

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.

70AA0C50-FF9F-4BCC-A8DE-20A76C79A2A5
Well, this is just plain cool.

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?

 

3 Things I Learned About T1D From my 10-Hour Road Trip

What do you do when a road trip that’s only supposed to last 7 hours turns into a 10 hour trek?

The answer isn’t cry, or whine, or freak the eff out. The answer is to roll with the punches…because you have no other choice.

At least that’s the way I saw it when my journey from Virginia to Massachusetts dragged out from 9 A.M. to 7 P.M. a couple of Fridays ago.

As someone who loathes driving, I was dreading this trip. But I knew it was important for me to conquer a fear of long-distance driving, as well as bring my car back to Massachusetts for a cutting-it-close car inspection. Plus, driving is much cheaper than flying, and you can’t beat the convenience of loading up your car with as much crap as you need to pack.

So I made myself do it, and besides teaching myself that I can handle a longer road trip, I also learned three interesting things about my diabetes from the many hours I spent in my car:hugging the cactus - a t1d blog.png

1. My diabetes doesn’t like for me to stay idle for so long.

This trip was an excellent reminder of how much my body and my diabetes rely on me to get up and move throughout the day. Throughout the workweek, I tend to get up from my desk chair at least once every hour, if only to stretch my legs. But that frequency of movement must make a difference, because I only visited a rest stop once during the full 10 hour trip. It felt awesome to move around for a few minutes, but I was eager to get back on the road and didn’t walk much while I was at the rest stop. Now, I’m wondering if I should factor that into my next long drive, but the idea of taking too many rest stops and prolonging my travel time is not exactly favorable to me…unless it means that my diabetes is guaranteed to be better behaved.

2. My diabetes is better behaved when I eat regular meals.

I eat a lot throughout the day. Breakfast, lunch, dinner, and at least two snacks are part of my daily meal plan. I typically eat all three meals and two snacks around the same times each day, to boot, so my diabetes depends on that consistency. It’s no wonder that I was dealing with rebelliously high blood sugars for most of my drive home, because I was fueling myself with absolute garbage: chicken nuggets (and only chicken nuggets for lunch), Fritos for a snack, and a granola bar for ANOTHER snack. In hindsight, it would’ve been much easier for me to pack a healthy lunch and maybe an additional, in-case-of-emergency snack, because I could’ve had a low-carb option available to me whenever I was ready for it. Plus, chicken nuggets and Fritos are things that I rarely consume, so of course my blood sugar wasn’t loving them.

3. My diabetes HATES stress.

And my goodness, was I stressed. I hate driving, period, so I doubly hate it when it’s a long distance. And my stress was exacerbated by the fact that I had to transport 60 cupcakes, on ice, back to Massachusetts with me for a bridal shower that I was planning for my cousin. That’s quite a bit to contend with, so it makes sense that my blood sugar shot up within minutes of me hitting the road. Even though I ran temp basals and bolused somewhat aggressively, it didn’t make much of a difference in my levels. And I suppose that I was hesitant to give myself too much insulin while I was behind the wheel, because going low seemed more dangerous and difficult to contend with than going high. Truthfully, though, there’s nothing fun about high or low blood sugar. It doesn’t matter if I’m driving, sleeping, exercising, whatever – anything other than “in-range” is just a pest to me.

So now that I’m aware of these three things, what am I going to do about it? For starters, I’m definitely going to get better about planning my meals for long car trips. I’m also going to try to take it easy a little bit…I put so much pressure on myself (I’m very good at working myself up into hysterics, really). So I might try some mindfulness exercises (e.g., meditating) before the next long drive…because anything I can do to take back control of my diabetes before going on my next one will be worth it.