And just like that, we’ve somehow, bewilderingly, arrived at the final day of National Diabetes Awareness Month 2020.
Not sure how that’s possible considering it should still technically be March 2020 (you know, when shit hit the fan), but here we are!
At the beginning of November, I really wasn’t sure that I was ready to don my diabetes advocacy hat and amp up my awareness efforts for the entire month. I’ve had enough going on in my personal life (spoiler alert: I bought a condo and moved into it at the start of the month) and as a result, I’ve spent much less time on social media and a whole lot more doing my very best attempt at adulting.
And despite that, I still found myself immersed in advocacy efforts – and blown away by what everyone else in the diabetes online community was doing.
Daily posts, live IG videos, fundraising efforts, and so much more happened all month long. They were inspiring, educational, and highly motivational to someone like me who was tepid at best about diving into advocacy activities this year. They were definitely enough to encourage me to keep posting for one of the many diabetes-themed Instagram challenges for the month. As minor as it was to write captions each day based on the prompts, it’s still what worked best for me in this weird year.
My big takeaway from this, though, isn’t that I should have done more or that I should feel guilty for doing the bare minimum…no, it’s a reminder that advocacy doesn’t take place during a single month or on one day.
Advocacy is a year-round thing.
I’m proud to talk about diabetes practically every damn day in some shape or form because I think that it helps people in my life realize that diabetes itself is a 24/7, 365-kind-of gig.
And I’ll keep talking and writing and expressing and advocating ’til the day there’s a cure for it.
There should be an asterisk after this blog title…because this is going to be about the lowest bg that I can really remember and have an actual blood sugar to associate with it.
Let me elaborate…
My real lowest low happened when I was in high school – I got out of bed one morning, stumbled down the stairs, and slurred to my mom that I wanted a bowl of Special K cereal for breakfast (she couldn’t understand what I said and promptly panicked before realizing I must be low). I don’t know what my blood sugar level was that morning because I neglected to do a fingerstick check, but I do know that it was a downright freaky incident that’s cemented in my memory.
But another new incident recently occurred that shook me in a similar way.
It was 1:30 A.M. I was nodding off when I heard my Dexcom alarming. I checked it and was somewhat surprised to see that I was 92 with two double down arrows. (I say “somewhat surprised” because in the earlier evening hours, I spent 3-4 hours chasing a stubborn high blood sugar and definitely wound up stacking insulin doses.)
Even though I wasn’t feeling any low symptoms, I decided to start treating the low. I ate two boxes of mini raisins, equaling about 20 carbs…
…and swiftly grew worried when I saw the number on my Dexcom app to continue to drop.
Okay, let’s have another box of raisins.
Alright, let’s do a fingerstick check.
Sheesh, I’m fumbling around in the dark, trying to locate my meter…
By the time my Dexcom said “LOW”, it was confirmed on my meter that I was, indeed, quite low. 35, to be exact.
And that was a number that frightened me.
Thank goodness I wasn’t alone when I was dealing with this 35 (that wound up lingering for a solid 15-20 minutes before slowly creeping up about 45 minutes after I ate my first box of raisins).
Thank goodness I had someone there to make sure I had plenty of sugar in my system before I fell asleep.
Thank goodness I had a can of regular ginger ale, some Reese’s, Dove chocolates, and popcorn all within arm’s reach (yes, I really did need to eat all those carbs in order to treat this one low).
Obviously, I recovered from this scary low, but it taught me that now that I’m living alone and won’t always have someone around me in the middle of the night, I should start thinking about inviting someone to follow me on the Dexcom app.
The next day, I talked to my parents about what happened and the three of us agreed that my dad will receive notifications if/when my blood sugar drops below 55. I feel a lot better knowing that he has access to my levels and that he knows to contact me if I’m low.
I’m not exactly grateful that I experienced this very low blood sugar…but I do appreciate that it’s reinforced the importance of having a nightstand fully stocked with low treatments as well as making sure that my family has a way of checking in on me when I may need their support.
We all know that 2020 has been a sucky year, so it’s not exactly surprising that immediately following Halloween, the world seemed to throw itself into the holiday spirit.
Between the commercials on TV, Black Friday sales, sparkly decorations, baking galore, and Hallmark movies, the Christmas season kicked off early and with major vivacity. Normally, I’m the kind of person who prefers to enjoy one holiday at a time, and I was somewhat repulsed to see all the Christmas merchandise in stores before Halloween was over.
So even though Thanksgiving hasn’t even come and gone yet, I’ve abandoned any remaining willpower I’ve had to hold off on decorating for Christmas. Like the rest of society, I simply couldn’t hold back my desire for some cheer!
One afternoon last week, I decided to haul up my Christmas tree and its accompaniments from the basement and start the process of decking the halls…
…but my diabetes had other ideas.
I’d just finished assembling my modest tree when I heard my Dexcom alarm sounding off, alerting me to a low blood sugar.
And I hate to admit it, but it didn’t surprise me – I’d felt the oncoming low for about 10 minutes prior.
I just wanted to decorate so badly that I was willing to ignore my blood sugar in order to embrace the Christmas spirit!
Alas, not too long after I heard that alarm, I knew I had to change my priorities as I started to get sweaty and a little woozy…so I left my tree naked and sought out a low treatment, slumping at my table in defeat while I ate it.
My diabetes told me it was too early to decorate for Christmas at that moment in time…
But you know that I told my diabetes otherwise later that night when I spent hours trimming the tree!
‘Tis the season and ain’t no way that my diabetes will prevent me from basking in it.
I crack open the slot on the back of my PDM where two AAA batteries are nestled. I smack them out from their slots, insert two fresh ones, and replace the cover. I wait for the system to power back on and am greeted with a high-pitched beeping sound soon after it’s reactivated…
…and become simultaneously annoyed, confused, and a bit panicked when I see a “system error” message displaying on the screen.
I follow the steps that flash on its display, instructing me to reset the date and time. Once I take care of that, my pod immediately deactivates, aggravating me further. I assemble all the supplies I need to activate a new pod, and once I have it on, I receive a message that I won’t be able to use the bolus calculation function on my PDM for 3-4 hours.
The whole incident was majorly inconvenient, but such is life with diabetes…
Anyways, if you’re like me, you’re probably wondering what exactly happened, and why it triggered my pod to fail.
Fortunately, I can explain it!
I’ve experienced this phenomenon before – it happens when the internal battery within the PDM (not the AAA batteries) has a problem and stops working the way it should. It causes the system to get confused when new AAA batteries are inserted (because the system shuts off and turns back on) and it doesn’t remember the date or time. Because of that, it can’t identify when the current pod was activated, so it immediately triggers it to stop working so new one can be applied.
It’s obnoxious as heck because it’s a total unpredictable phenomenon, but it is what it is. It can be dealt with in a matter of a few hours, and the best part is that Insulet can be contacted so they can be made aware of the issue and overnight a new PDM – which is what they did for me. The day after this PDM problem occurred, I gave them a call, and within 10 minutes I was promised a new PDM that I would receive in about 24 hours.
So when a PDM system error happens again – not that I actually anticipate it to for a long time – I know the right course of action is to keep calm, follow the system’s instructions, and give Insulet a phone call. In other words? Rolls with the punches, because diabetes is good at directing them my way.
Today is Day 18 of the #TrueDiabeticChallenge that I’ve been posting about on Instagram all month long! I’m using the prompt to inspire the topic of today’s blog post: mental health. Read on to learn how I’ve been juggling my diabetes and mental health lately…
When I think of “diabetes and mental health”, a lot of things cross my mind: Burnout, self-care, and a whole slew of emotions, to name a few of them.
So as I pondered what I’d write about when it comes to this topic – and be totally transparent as to how my mental health is lately as it pertains to my diabetes – I knew that one emotion in particular would be the focus.
For the first time in my life, I’m living alone (mostly by choice). While this new chapter is certainly exciting, it’s also downright petrifying at times, especially when I’m contending with literal highs and lows of my blood sugar.
I struggle the most with being alone and managing my diabetes when I go low. This probably isn’t uncommon among other people with T1D who also live alone and I knew to expect to feel this way to a certain extent before making this transition. But I didn’t realize exactly how much comfort I take in the presence of others when my blood sugar is low.
I don’t know what it is, exactly…it’s not like I suddenly forget how to treat low blood sugars. It’s not that I ever relied on someone else to bring low blood sugar treatments to me (though I’ve always appreciated that on the occasions it’s happened). And I benefit from having a Dexcom CGM to monitor my blood sugars 24/7 and alert me to sudden changes. So…what gives?
As I search for that answer, I’m going to try to remember to be patient with myself as I navigate my new circumstances. It takes time to acclimate to a new environment and diabetes can make that more challenging. I mentioned self-care at the start of this post…maybe it’s time I start practicing it more deliberately to help make this transition smoother!
The answer to the above question is a big, fat, resounding…
I’ve written blog posts in the past about questions I’m frequently asked about life with diabetes, but shockingly, I neglected to include this one…which is so surprising because it’s probably among the more frustrating questions.
Don’t get me wrong: Diabetes technology has come a loooooong way, particularly in the last couple of decades. There are options when it comes to insulin pumps and pens alike (that is, if the choices are covered by insurance…that’s another story for a different post). There are tubed, tubeless, touchscreen, CGM-integrated, and waterproof pumps out there. There’s even a couple with intelligent software that can kick in and predict low or high blood sugars. And there are smarter insulin pens available that far surpass the ones I used just 7ish years ago…some can track insulin intake and are bluetooth-enabled.
It sounds like our pumps should be equipped to do all the work for us…but the simple truth is that they can’t.
Our diabetes devices are far from perfect.
Error messages pop up.
When it comes to dealing with diabetes, technology certainly helps us, but sometimes things can go so awry with it that it almost makes life even more frustrating.
Certainly, the reward outweighs the risk; after all, I don’t believe that many people would continue to use pumps, CGMs, etc. if they didn’t work for them the vast majority of the time. I know that I wouldn’t.
But there’s too many variables happening independently of these devices doing their jobs that it essentially guarantees imperfection.
Stress, miscalculated carbs, medication dose/timing/interactions, too much/too little sleep, expired insulin, temperature, exercise, menstruation, alcohol consumption, family and social pressures…these are JUST A FEW of the things that are known to impact blood sugar levels. Just a few!!! I can barely keep track of those factors, let alone how they each affect me…and to expect a machine to know how to do that is placing a little too much faith into something comprised of wires and chips.
My point is that I really wish that people living without diabetes didn’t make assumptions that our lives are easy because of these devices. They are easier, most of the time. But there’s that other portion of time in which a lot of spare mental energy is used on maintaining that technology and making sure it functions the way it should, which is far from easy.
The short answer to the question-as-a-title of this blog post is no, I (we) do all the work for my (our) insulin pump(s)…they’re smart and capable, but only with the input of the people handling them.
One thing that hasn’t changed in 2020 is the significance of tomorrow’s date: November 14th is internationally recognized as World Diabetes Day, a day specially reserved for diabetes awareness and advocacy.
Several weeks ago, when I realized this date was rapidly approaching, I was unenthused about it, to put it mildly. My life has been super-duper busy lately…I’ve dealt with high stress and anxiety levels, an overloaded schedule, and not enough time for self-care. So when it hit me that diabetes awareness month was just around the corner, and with that it would bring World Diabetes Day, I just felt “meh” about it. This year has been so sucky that celebrating didn’t feel right or something that I could muster up the energy to do.
However, that was before I realized that there’s a theme for this particular World Diabetes Day…promoting the role of nurses in the prevention and management of diabetes.
Nurses are heroes under normal circumstances. But in the context of 2020? They’re more important than ever. I read more about the reasoning behind the World Diabetes Day theme on the International Diabetes Federation website and immediately understood why nurses deserve recognition on 11/14:
Nurses currently account for over half of the global health workforce. They do outstanding work to support people living with a wide range of health concerns. People who either live with diabetes or are at risk of developing the condition need their support too.
People living with diabetes face a number of challenges, and education is vital to equip nurses with the skills to support them.
As the number of people with diabetes continues to rise across the world, the role of nurses and other health professional support staff becomes increasingly important in managing the impact of the condition.
Healthcare providers and governments must recognise the importance of investing in education and training. With the right expertise, nurses can make the difference for people affected by diabetes.
The International Diabetes Federation, 2020
So tomorrow, on World Diabetes Day 2020, I’m going to express my gratitude for all nurses, especially the ones who work specifically with people with diabetes. They deserve all the recognition and support in the world, and in a year in which the world is faced with a pandemic, the work that they do (along with other healthcare workers and essential employees) for people with and without diabetes is invaluable.
Thank you to all nurses and healthcare workers…and Happy World Diabetes Day to my fellow people living with diabetes. Wishing a wonderful day for you all filled with good blood sugars, education, and positive advocacy experiences!
Tomorrow, one of my favorite diabetes non-profits – the College Diabetes Network (CDN) – celebrates its 10th birthday!
All I can say is…wow. A whole decade of CDN doing beyond amazing, impactful things for the diabetes community.
I’m not an active member of an existing CDN chapter today, but I used to be. In fact, I was the President of the UMass Amherst chapter of the CDN for close to three years when I was an undergrad there. And it just so happens that my time as President coincides with the time that CDN was really just beginning, meaning that it’s been my honor and privilege to witness it thrive from its origin.
I will never, ever forget being coerced – I mean, attending – a talk at a local college with my mom in which college students and parents sat together on a panel and spoke to high school students (like me, at the time) about the college experience…mainly, how to handle the transition from having my parents help me manage my diabetes to gaining more independence and accountability for it as a young adult away from home.
At this talk, I met Tina Roth, the founder and CEO of CDN. Actually, I didn’t just meet her – we chatted for a bit about how I was going to her alma mater, UMass Amherst, and that there was this little group on campus there called the College Diabetes Network. She told me I should check it out in the fall and think about joining in case I had the desire for peer support when it came to juggling diabetes and college life.
I didn’t know it then, but that conversation and my subsequent action to attend a CDN meeting changed my life.
Through my involvement with CDN, I was introduced and understood for the first time in my life the value of peer support when living with type 1 diabetes. As someone who rejected it her entire childhood, it was brand-new to me as an adult and an incredibly powerful tool that I believe helped me navigate college as a PWD in an informed, healthy, positive, and self-assured way.
My involvement with CDN gave me confidence: as both a student leader and as a person living with diabetes.
My involvement with CDN gave me exposure: to other students just like me across the country, to new technologies, to resources that improved my quality of life.
My involvement with CDN gave me a career path, for goodness’s sake: It reinforced that I’m a writer. I became a T1D blogger through an opportunity that became available to me because of CDN. I was able to put both my CDN leadership experience as well as my blogging skills on my resume that lead me to the full-time job that I have today.
My involvement with CDN gave me so much more, too…lifelong friendships being among the most important. I met the most inspiring, motivated, intelligent, and kind people through CDN. I love keeping up with them via social media and pre-2020, I was even able to catch up with some of them in person. And I can’t wait for the day that we can do that again.
There is no doubt in my mind that CDN changed my life. And I’m just one person. To think that they’ve continued to grow and expand, with more and more chapters being created at colleges across the country, and more and more people learning about their mission to provide young adults with T1D the peer connections they value, and expert resources they need, to successfully manage the challenging transition to independence at college and beyond.
Happy birthday, CDN. Thank you for everything you’ve done for me, and thank you for all that you continue to do for countless young adults. I can’t wait to see what the next 10 years look like for you!
On Instagram, I’m participating in the #TrueDiabeticChallenge all throughout November. Today’s post was inspired by the prompt for Day 9 of the challenge – name a song that describes diabetes today. Here’s a song that I think describes my relationship with diabetes today, even though it’s a throwback tune…
I’m a child of the 90s, so you can bet that I listened to a whooooole lot of boy bands and girl groups growing up – N*SYNC, Backstreet Boys, Spice Girls, and Destiny’s Child were just a few of them.
But of course, I loved my solo artists…especially Britney Spears.
Her first album, “…Baby One More Time”, was everythiiiiiiiing…oh, the NUMBER of times it was played in my house! Like most kids my age at that time, I couldn’t get enough of her bubblegum-sweet voice and catchy-as-heck lyrics/tunes. No matter what your opinion of her has been throughout her contentious career and life in the spotlight, you can’t deny her talent as a singer, dancer, and entertainer.
Brit’s been on my mind lately (I know I’m not the whole one – #FreeBritney!), so a few times throughout the workweek, I tend to listen to her music from all sorts of albums she’s put out over the years. I’m happy to report they’re still absolute BOPS today, but what’s more is that I found one that perfectly fit this prompt for me:
Okay, besides being an all-around excellent song with an entertaining music video (yes, that’s Melissa Joan Hart AND Adrian Grenier making cameos in it), it also tooooooooootally describes how my diabetes makes me feel these days. It drives me CRAZY!!! Let’s look at some of the lyrics…
Baby, you spin me around, oh
The earth is moving, but I can’t feel the ground
-Me when my blood sugar is low
You drive me crazy, I just can’t sleep
-Me every dang time my blood sugar interrupts my sleep
Oh, oh, oh crazy, but it feels alright
Baby, thinking of you keeps me up all night
-Definitely NOT alright because I hate when diabetes keeps me up at night and it sure as hell isn’t my “baby”
So maaaaaaybe it’s a bit of a stretch to say this song is perfect for me and my diabetes, because the way Brit sings it and how the lyrics are written, she’s enjoying being driven crazy. But not me! This is one of those songs where I could easily rewrite it and make it an eff-you diabetes anthem.
Really, though, the hook of the song captures it all: YOU DRIVE ME CRAZY.
You’re looking at the title of this blog post and thinking…”ugh, clickbait!”
I assure you that I’m not trying to present this as clickbait; in reality, I did recently say something extremely messed up about my diabetes.
In a dramatic outburst spurred by three days of frustratingly high blood sugars, I said to my parents, “I’m going to die of diabetes.“
Look…we all say things that we don’t mean sometimes. But when I said this, there was a teensy-weensy piece of me that really believed there was an ounce of truth in that statement. That’s how fed-up I was with my diabetes.
It’s because I was going through insulin like crazy in the first half of that week. I couldn’t figure out why my numbers were running so high and tried what seemed like everything to cope with it: eating low carb, running temp basal increases, doubling my mealtime insulin, staying as hydrated as possible, checking ketones…and I was still contending with high numbers. The longer I stayed above my high threshold on my CGM, the more I convinced myself I was doing damage to my body, and that was an incredibly awful feeling. So I made that horrid exclamation out of sheer exasperation and fear.
I was letting my diabetes win that day.
I was letting my diabetes control the narrative.
I was letting my diabetes make me think that I was doing everything wrong, when in reality I was trying like hell to do everything right.
And…I was letting myself down. That defeatist attitude is not how I approach life with diabetes.
But I said what I said, and I can’t take it back…but I absolutely can change my thinking so that when something like this happens again, and I’m just feeling incredibly burnt out from it all, I have a new thing to say that is far from messed up:
I’m going to LIVE WITH diabetes.
Not just live…I’m going to live well with diabetes.