My Take on Diabetes and Support

I wrote a version of this post on November 20, 2019. I wanted to revise it and share it today because, as we approach a week in which we recognize gratitude for our loved ones, I want to express how grateful I am for the people in my life right now who support me throughout the highs, lows, and everything in between that comes with life with diabetes.

Emotional support is a lovely thing. It feels good to have people in your life who you feel have your back. And it’s twice as nice to have when you’re dealing with a chronic illness like diabetes.

I talk extensively about diabetes and support in the most recent episode of the podcast, Ask Me About My Type 1. (Here’s the link in case you haven’t listened to it yet.) Rather than rehash everything I said in that episode, I’m going to use this post as an opportunity to reflect how my wants and needs in terms of support for my diabetes have changed over the years.

It’s interesting (at least, it is to me) to think about how and why my desire for support has changed as I’ve grown older. My childhood was very normal despite diabetes. It was always there and it was always a thing I had to deal with, but I definitely didn’t feel compelled to talk about it as much as I do now, let alone lean on others in difficult times. Why is that?

I think it has a lot to do with getting to know myself better as I’ve aged.

In this post, I get all self-reflective-y on diabetes and support.

After all, they say that with age comes wisdom. And though I don’t exactly consider myself a wise old sage or anything of the sort, I do think that I’ve acquired some enlightenment about myself and the way that I process things in my adulthood.

Specifically, I realized in the last few years that diabetes has instilled in me a strong desire to feel in control of every aspect of my life…not just diabetes. When something doesn’t go according to whatever carefully thought-out plan I’ve cooked up, I get upset. And I tend to either bottle up my dismay, which is never a good thing to do, or I totally take it out on the whichever poor soul happens to be within my vicinity, which isn’t fair. Neither of those reactions is a healthy method of dealing with things, but at least I’m aware of that and I’m actively trying to improve how I cope.

I think that this example shows how important diabetes support has become to me because I’m able to lean on others in those times that all of my diabetes plans don’t work out the way I envisioned them. I’ve figured out, over time, that it’s just about the only thing that really works for me. Talking to other people with diabetes (and without diabetes) about struggles that I’ve faced makes me feel less alone. It used to be scary for me to be so vulnerable with others, but I’ve found that it’s worth it because it helps me heal, move on, and forgive/accept myself for feeling whatever I’m feeling.

And now, two years after I wrote this original post and two years of life experience later, I’ve finally fostered my perfect support network from the different people and relationships in my life. I’ve got the lifelong support of my family members, the years of support that my friend groups have provided to me, support from coworkers who work with me in the diabetes space (bringing a whole new meaning to people who really and truly “get it”), and the support in my romantic relationship that I’ve been missing my entire adult life. It feels incredible to have a partner who always asks questions and demonstrates a willingness to learn about my diabetes, adds new perspective and helps me identify solutions when I’m being challenged by my diabetes, and shows up for me when I really need him to. That, and the support I get from the other groups I’ve mentioned, is truly powerful…and when it’s combined with learning how to rely on others and best support myself, support becomes magical and absolutely enhances the quality of my life with diabetes.

What I Wish People Knew About Life with Diabetes

As National Diabetes Awareness Month speeds by in a lightning-fast pace, I keep finding myself going back to this question: What do I wish people knew about life with diabetes?

My answer to this question changes depending on the kind of day and experiences I’m having with my diabetes. For example, on the occasions that I have a pod failure or my Dexcom loses signal for hours, I wish that people knew life with diabetes is marked by a dependence on technology. When I have several bad low blood sugars in the middle of the night, I wish that people knew life with diabetes means you lose out on a lot of sleep. And the times that it seems like I live at the doctor’s office or spend all my spare time on the phone with insurance companies, I wish that people knew life with diabetes can be a giant (and expensive) time suck.

While there’s obviously a lot that I wish people knew about life with diabetes, I think that I can identify the number one, most important thing that I wish people knew…and that is: life with diabetes is unpredictable. No matter how many years I’ve lived with it, no matter how often I think that I’m doing the right thing in my care for it, it can still prove me wrong all the time. It’s challenging, frustrating, stressful, and draining, and I really wish that people realized how much work it requires to have diabetes. It’s not as simple as counting carbs, injecting insulin, and eating right – it demands mental and physical energy in order to care for it properly, and people living with diabetes don’t ever get a break from that.

I do my best to smile, even when diabetes is at peak unpredictability.

Despite that, I try to smile through it all…because diabetes and its curveballs are a lot easier to handle with a positive mindset. But that doesn’t mean that I don’t wish that people knew how difficult it can be, too.

3 Nighttime Lows in a Row

The night of the first low, I was “good” and treated with glucose tablets.

The night of the second low, I shamelessly treated with a leftover Halloween candy blondie (okay, two of them) that I had made earlier that day.

The night of the third low, I was exhausted. And feeling nothing other than a desire to sleep, I treated with both glucose tablets AND sour patch kids, because my body decided it needed that many carbs in order for my blood sugar to level out for the rest of the night.

By that third night, I was so dang tired. I’d had to go downstairs to get the sour patch kids, and by the time I was done eating them, I couldn’t fathom walking all the way back up the stairs to get into my big, comfy bed. So I just crumbled onto the couch, pulling a blanket over me, and snoozed there for a bit. I probably could’ve curled up into a ball on my carpet and slept just as soundly, even if only for awhile, because I was so spent from being woken up in the middle of the night for the third evening in a row to treat a low blood sugar.

I wish that people knew that diabetes is truly a 24/7/365 condition.

I hate having my sleep – which seems harder and harder for me to get enough of as I get older – interrupted by something as stupid as a low blood sugar.

I hate having to eat in the middle of the night and ruining the minty taste leftover from my brushed teeth prior to bedtime.

I hate that sometimes, the low is bad enough that I get woken up one or two or even three more times in the same night because I’ve got no choice but to consume more carbs.

It seems fitting to write about this – how disruptive my diabetes has been to my sleep over the course of three nights, let alone my entire life with diabetes – during National Diabetes Awareness Month. Because I don’t think the rest of the world really understands that diabetes truly does not have an “off” switch. People who live with diabetes don’t have the luxury of sleeping peacefully without having a single worry about diabetes: It can and will disturb the soundest of sleeps, and it’s frustrating, inconvenient, and annoying every time it does.

Happy National Diabetes Awareness Month!

It’s that time of year again – National Diabetes Awareness Month!

Did you know that the blue circle is the universal symbol for diabetes? It represents the unity of the global diabetes community in response to the rising number of people affected by diabetes.

I’m not sure if it’s because I work for a diabetes organization now, but sheesh, this month seems to have arrived more suddenly than it ever has. I’d say it’s caught me off guard, but after literally months of preparing for it as part of my job, it’s really just got me marveling over how fast time flies.

It’s also got me reflecting on how I’ve participated in NDAM in the past. Previously, I’ve done daily postings on my Hugging the Cactus Instagram account and replied to various prompts throughout the four weeks here on the blog.

This year, I’m not so sure I have the bandwidth to dive so deeply into the spirit of the month – but that doesn’t mean I’m mentally checking out of it altogether.

Rather, I’m plan on being more intentional in my approach. Instead of replying to daily prompts (that, over the course of the month, start feeling like homework – in other words, an unenjoyable task), I’d like to post when I feel like I actually have something to say. I don’t want to post filler content, I want to post things that are meaningful and capture my feelings about diabetes, NDAM, and the broader diabetes community.

That’s not a knock on the everyday post inspiration that many members of the DOC take part in – I think it’s wonderful that they have fun with it and use it as a very effective way to raise diabetes awareness throughout the month. It’s just that for me, as someone who’s been part of digital NDAM activities for the better part of a decade (!!!) now, it’s time that I mix up my routine a bit and also step back so I don’t spend all of my mental diabetes energy on NDAM in lieu of my actual diabetes care.

Here’s to deliberate diabetes awareness and care this month!

National Diabetes Awareness Month 2020: A Recap

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!

The blue circle…a symbol of diabetes awareness and advocacy efforts.

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.

PDM System Error: What It Is and What to Do When It Happens

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.

Error messages on diabetes technology are never something I’ll be glad to see, but they do happen.

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.

A Check In on Diabetes and Mental Health

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.

Loneliness.

I’m actually a bit envious of this cartoon girl because at least she has a furry friend to keep her company.

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!

“Doesn’t Your Pump Do All the Work for You?”

The answer to the above question is a big, fat, resounding…

NO.

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.

_Doesn't Your Pump Do All the Work for You__
No…these two pieces of plastic simply CANNOT do all the work for me. They actually rely on me quite heavily.

Failures happen.

Batteries drain.

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.

World Diabetes Day 2020: Celebrating Nurses Making a Difference in the Lives of People with Diabetes

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.

World Diabetes Day is tomorrow…what will you do to celebrate?

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!

A Song to Describe Diabetes Today…

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.

Speaking of 90s throwbacks, doesn’t this color scheme remind you of Lisa Frank’s colorfully designed notebooks, folders, and pencils?!

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:

(You Drive Me) Crazy!

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.

The “you” here is YOU, DIABETES!