It’s Not Just About the Money: The Cost of Living with Diabetes

It’s November 25th which means it’s day 25 of the Happy Diabetic Challenge! Today’s prompt is about the cost of diabetes. Naturally, I started thinking about just how much diabetes costs me, not just in terms of money but also emotionally and physically…

We all know that diabetes is an expensive chronic illness.

Diabetes is associated with doctors appointments, pricey medical equipment, and maybe even the occasional trip to the hospital…all of those things aren’t cheap. My insulin alone would cost me $4,962.32 per year if I was uninsured (and if I do the math, this means that I would’ve spent over $100,000 in the past 22 years on JUST INSULIN). Those are not small sums of cash!

Diabetes hits those of us who are affected by it hard financially, but there are also significant emotional and physical costs associated with it.

It's Not Just About the Money_ The Cost of Living with Diabetes..png
Diabetes is so greedy, and not just in terms of how much money it costs to care for it.

Emotional – Diabetes takes a toll on my mindset (un)fairly often…and it can happen so rapidly that I barely have time to process the emotions. For example, I can go from being happy-go-lucky to angry because my Dexcom alarm went off and it’s telling me that my blood sugar is high. The anger will hit me hard and I’ll spend too much time stewing over my blood sugar and the best way to correct it.

Plus, I’d be remiss not to mention diabetes burnout. It’s the feeling of total defeat, of no longer having the desire to take proper care of diabetes. It happens to the best of us, and it’s not fun to experience. But it makes sense to feel this way from time to time, because diabetes is so demanding and relentless. People with diabetes never get a break from it, so it’s no wonder that it takes a toll on emotional well-being.

Physical – Diabetes is a physically present in many ways on my body. The OmniPod insulin pump that I wear, as well as my Dexcom CGM sensor, leave the most obvious lumps and bumps underneath my clothing that often prompt unwelcome stares from strangers. And although these devices have improved my quality of life with diabetes, they’ve also undeniably altered my body image. I never had much self-confidence when it comes to that, anyways, and my devices certainly don’t improve how I feel about my own body. I know plenty of people with diabetes who can relate to that sentiment.

There are also the scars that diabetes leaves behind. My fingers are dotted by dozens of permanent black scars left from lancets pricking them multiple times per day for the last 21+ years. I sport purple circles under my eyes pretty frequently from a lack of sleep that is, more often than not, my diabetes’ fault. And sometimes, I have unsightly red marks when I remove old pods that practically look like zits and can take days to go away because the pods’ cannulas pierced sensitive spots. These are all unattractive, physical reminders of diabetes that I can’t do a damn thing about, and it’s frustrating to have even less control over how my body appears because of this stupid chronic illness.

Diabetes is a friggen’ greedy disease.

It depletes my wallet and emotional state, and it manifests itself on my body in ugly, visible markings.

It tries so hard to rob me of everything I’ve got.

But luckily, my determination to fight back harder against it is stronger than my diabetes will ever be.

Dia-Feated.

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.

B80D7D9B-0596-4E9B-8D08-34F3EE1078FE

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.

 

It’s Not Called Cryabetes

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.

Definitely very chronically UN-chill of me, right?

Dualitee Apparel

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.

A Tough Week

It’s like you’re always stuck in second geeeear

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:

1CED7972-B765-4DF8-92D8-5ED4A102DA09

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.

How Moving to a New State Impacted my Diabetes

A few short days ago, I made the move from Massachusetts to Virginia…and just as I predicted, the whole process has been emotionally draining. I’ve cried more times than I can count. I’ve busted my butt trying to get settled as quickly as possible. I’ve been eating poorly as a way to cope with my emotions. And my blood sugars have been all over the place as a result…again, just as I predicted, but still a bit disheartening.

I knew to expect some diabetes turbulence from the get-go. After all, a seven-hour car ride doesn’t exactly bode well for anyone’s blood sugar. But surprisingly, the drive to Virginia was probably when my blood sugar was most stable. I was snacking a little (okay, a lot) on the drive because it gave me something to do other than cry and talk unintelligibly to my boyfriend (my trusty driver) and it was far from healthy snacks…think fast food breakfast sandwich, Reese’s cups, and trail mix. Could’ve been worse, could’ve been a whole lot better. I think that because I was well aware of the high carb content of my snacks of choice, it motivated me to stay on top of my blood sugars and give myself micro-boluses as needed.

So that was all well and good.

Then came the actually moving-in process.

You are a rare gem.

Box after box and bag after bag were transported from the car, up three flights of stairs, and down a long hallway. It’s no wonder that I went a little low from all that back-and-forth, though I did think that riding the elevator as needed would’ve prevented too much of a drop. And if I could go back in time, I’d like to address the day that I took off from work to do the bulk of my unpacking and adjust my temporary basal settings to something like a 50% decrease for six hours or so. That’s because as I sorted through clothing, emptied boxes, and organized all of my possessions, my blood sugar just did not want to stay put at a comfortable level. Over the course of the very long day that I spent unpacking, my blood sugar dropped low enough that I had to stop what I was doing to eat three times. It felt like I was constantly stuffing my face with food, which was frustrating and the last thing I wanted when all I desired was to get settled.

That’s the physical component of moving – a lot of labor; more specifically, lifting, tidying, hanging, folding, unfolding, and if you’re me, cursing.

But there’s an emotional side to it, too, that I would guess affected my blood sugar just as much as the physical aspect did.

I’ll be honest: Tears were shed. Anxiety felt like it would swallow me whole at points. Doubts ran through my mind as I wondered whether I was strong enough to be so far away from family and friends. I was feeling – and am still feeling, TBH – so many different emotional swings that I am fairly certain that I can blame my blood sugar swings on them.

I’ve said it before and I’ll say it again: I know I need to give myself time to adjust. I’ve got to take it day by day, hour by hour, moment by moment. I need to let myself feel the way that I feel and remember to be kind to myself, especially where diabetes is concerned.

It just helps to write it all down.

The Hellacious, Headstrong High

There’s lots of different “kinds” of high blood sugar. There is the type that is self-inflicted due to inaccurate carb counting or insulin dosing. There’s the sort that can be blamed on technological error – an insulin pump failure or a cannula kink, for instance. And another kind is linked to illness, when a cold or other sickness prevents insulin from working efficiently, thereby stopping blood sugars from coming down to normal levels.

And then there’s the type of high blood sugar that simply can’t be explained. It’s high for seemingly no goddamn reason, and it’s the most frustrating high of them all.

That kind of high is also the kind that takes what feels like forever to come down.

I experienced this after a Saturday of travel earlier this month. I’m fairly accustomed to traveling, especially if it’s a quick trip on a plane or just a few short hours in the car. I say this because I’m almost positive that my hours-long high blood sugar had nothing to do with my travel day…although when it comes to diabetes, nothing can truly be ruled out.

Anyways, I digress. That day involved me heading out of the house at 10 A.M. I drove to the shuttle that would take me to the airport. I got to the airport about an hour before my flight was due to take off. I went through TSA Pre-Check – my first time using the service, which I totally recommend – without any issues. I had enough time to pick up some food for a small lunch, but when I checked my CGM and noticed that my blood sugars were hovering in the 200s, I decided to deliberately pick lower-carb snacks to munch on in lieu of a real lunch. Turkey jerkey and cheddar popcorn weren’t the most filling snacks, but it was something.

I figured that by the time I got on the plane, my blood sugars would be stabilizing. No such luck. I was still in the low 200s. I took one or two more boluses during my quick hour-and-a-half long flight, thinking that I must be heading for a blood sugar crash by the time I deplaned. Nope. I was still running high, even by the time I met my partner by the baggage claim. I raised my temp basal and kept my fingers crossed that by the time we reached the restaurant we were bound for, I’d be coasting down. As we got settled at our table, I checked my blood sugar and felt slightly relieved to see that I was 183. At least I was finally below 200.

Teacher's Month 2020

I pushed blood sugar worries out of my mind for the next hour or so. I just wanted to enjoy my meal and my time with my significant other. But as we finished eating and made our back to the car, I couldn’t help but notice the repeated buzzing coming from my CGM. I was rising gradually, well on my way to 300. I tried to not panic and gave myself more insulin. We arrived home and the vicious cycle truly began. For the next three or four hours, I tested and corrected every hour, on the hour. Midway through that interval of time, I changed my pod – perhaps it stopped working properly – and prayed that the new pod would finally bring me back down.

And, spoiler alert: It eventually did. But in the agonizingly long hours I had to wait before my blood sugar was down…I experienced a bevy of emotions. I was mad. I was upset. At one point, I was very technical and rational, going through my next steps both in my head and out loud to my worried partner. He asked me what we should do in the event that my blood sugar was still elevated after a certain length of time, and that’s when I started crying tears of fear and frustration. It all felt so unfair. I was doing all the right things and it wasn’t make a difference. That was a hard reality to swallow. And I couldn’t help but cry harder when he asked me to show him how to use glucagon again (it’s been at least 3 years since he had formal training with my diabetes educator). Part of me felt better, knowing that he was prepared for adverse affects of taking so much insulin to combat a high, but I think I was more focused on and distraught by the fact that he might need to intervene, which was an especially upsetting scenario because I never want to put that responsibility on anyone.

Once I calmed down, I filled a water glass, sat down on the couch, and texted my mother, who is always my T1D sounding board. She reassured me that I was doing the right things, and that I should continue to wait and see what happened. She also advised me that I should be prepared for a crash, because sometimes, it seems like all the insulin kicks in at once when blood sugar drops too quickly/low from a high.

So I waited. I drank water. I showed my boyfriend the app on my phone that simulates glucagon injections – just in case. I played video games. I tried to keep my cool. Before long, it was nearing midnight, and I desperately wanted to curl up in bed. I went through my pre-bed routine, washing my face and brushing my teeth, knowing I’d check my blood sugar for the umpteenth time that night once I was done.

And…it was 153. Better yet, it didn’t go as low as it could have overnight: I dropped to about 75 by 8:30 A.M. All things considered, it was a decent outcome.

The hellacious, headstrong high had finally subsided. I was so, incredibly relieved. And I’m so, incredibly hopeful that I don’t experience a day like that again any time soon.

Type 1 Diabetes, an Invisible Illness

This blog post is a response to a prompt provided by my friends at the College Diabetes Network, who are celebrating College Diabetes Week from November 12-16. Even though I’m no longer in college, I like to participate in CDW activities as much as possible to show my support for the CDN!

Screen Shot 2018-11-04 at 7.52.43 PM

Invisible illnesses like diabetes can be difficult for healthy people to truly understand. Typically, they only see bits and pieces of it; for instance, when someone performs a blood sugar check or injects insulin. There’s so much that they don’t see: doctor’s appointments, late/sleepless nights, complex calculations, careful monitoring, and so forth.

But what’s really difficult for anyone to see is the emotional impact of diabetes.

Unless I choose to open up to someone about it – which is easier said than done – then there’s no way for another person to grasp the magnitude of the emotional side of diabetes. There’s no way for someone to feel the incredible amounts of anxiety, fear, and anger that cycle through me as I deal with diabetes. While I don’t experience these emotions every single day, I DO have to experience diabetes daily, and it’s impossible for someone to know what that’s like unless they either have T1D or care for someone with it.

I don’t wish for anyone in the world who’s unfamiliar with the (literal and emotional) ups and downs of diabetes to actually learn what it’s like. But I do wish for a world that’s a little more understanding, accepting, and educated when it comes to all things related to diabetes – and that’s why I advocate.