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.

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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.

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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:

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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.

Blogger Burnout

Blogger burnout…it’s very similar to diabetes burnout, only not quite as frustrating because it doesn’t affect my physical and mental health as severely.

But it does best describe how I’m feeling right now. To be honest, I’m a passenger on the struggle bus at the moment as I try to balance many of life’s demands. I’m traveling frequently this month, attending numerous family and social events, scheduling all sorts of appointments, and trying to remember to breathe in between everything. A lot of this stuff is self-inflicted, I’ll admit, as I tend to thrive when I stay busy. But I won’t deny that it’s hard. When running this blog is tossed into the mix, I feel like I’m on the cusp of spontaneous combustion. Oh, and it doesn’t help that my blood sugars have been up and down as I run – no, sprint – from one thing to the next.Love always wins. (1)

I put a lot of pressure on myself to deliver the best content that I possibly can to my readers, who I care about very much, even if I don’t know all of them personally. I do my best to post brand-new content three times per week, which involves a lot more work than you might think. I have to come up with a topic, create an image to go with it, edit the piece, schedule its publication, and prepare multiple social media platforms to promote it. And that’s just for one single blog post.

By no means is this a “farewell” post or even an “I’m-taking-a-break-for-an-undisclosed-amount-of-time” post; rather, I just want to be honest with my audience that I’m struggling to keep up delivery of solid content. Please don’t be surprised if I continue to republish old content (but still originally written by me) in the next few weeks. Please continue to visit the blog as often as you can. And please, bear with me as I get through this little burnout phase – I promise to come out of it and be a stronger writer before long.

How to React When a Loved One With Diabetes is Struggling

If you have a partner/spouse, relative, or friend with type one diabetes, it can be difficult to know how to best support that person when they’re experiencing struggles related to diabetes. You might try to offer a shoulder for your loved one to lean on, but that might not always work. Your loved one might push you away or continue to internalize their issues. It can create turbulence in your relationship with one another, and it’s frustrating all around.

So what can you do?

We Have 10,000 Followers!

As someone who both has T1D and loves others with T1D (my mom, my aunt, many good friends), I believe that the best way to react is to just listen. Whenever I’ve faced serious struggles or emotional turmoil due to diabetes, nothing has helped me quite like a person who spares time for me to listen to me. Whether I just need to spew out an angry diatribe (LOL at the pun), cry about my problems, talk through issues, or seek advice, it’s worked wonders on me to know that I have individuals in my life who are willing to listen to me. Let me emphasize the listen part once again – listen, not tell me that I’m right or wrong, or offer advice (unless I specifically ask for it).

I get it; sometimes, it’s easier said than done to just listen. A few people I know are so determined to help me fix the problem that they can’t help but react emotionally along with me when I’m dealing with diabetes drama. But trust me, that usually heightens (rather than alleviates) the tension.

It’s all about teamwork. Give and take is involved. Often, enormous amounts of patience are required. Sometimes, it takes awhile for the struggles to subside. But one thing that is certain is that your loved one with diabetes will always thank you and be grateful for your support in their time of need. It’ll strengthen your relationship as well as function as proof that diabetes can’t break your bond, no matter how hard it might try.

 

What I Wish my Dog Knew About Diabetes

Clarence the Shetland Sheepdog joined our family almost one year ago, and he’s brought us nothing but joy and unconditional love ever since then. Well, he’s also brought us a few headaches (when he has been disobedient) and some panic attacks (when he chews things he shouldn’t), but that’s besides the point – this little puppy is adored beyond his own comprehension and he fits in perfectly with us.

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But something else that Clarence doesn’t quite understand is…yep, you guessed it, diabetes. Realistically speaking, he’s probably totally unaware of it – the bliss of being a dog. I wish he had some sort of grasp of it, though, because there are times when it gets in the way of my interactions with him. How? I’ll get really specific here with my list of things that I wish my little peanut knew about diabetes:

  • I wish that he knew my pods/CGM sensors aren’t chew toys! He doesn’t often grab at them, but every now and then, he’ll notice them on my body and nudge them curiously. And since he’s a mouthy guy (being a puppy and all), he has tried nipping at them a couple of times, which always leads to me yelling at him and shoving him away. So it’d be nice if he could recognize that these things help me stay alive and shouldn’t be played with.
  • I wish that he knew how to fetch glucose tablets or raisins for me/my mother when we’re dealing with low blood sugars. Man, that’d be awesome! But knowing Clarence, if I tried to train him how to do that now, he’d be way more interested in drinking or eating anything intended to remedy a low blood sugar, rather than bringing it over to me or my mom.
  • I wish that he knew how to react, period, to any sort of blood sugar “event”. For example, if we’re out walking and I need to take a break in order to check my levels, it’d be swell if he could wait patiently rather than tug on the leash to keep the walk going. I can’t blame him, he’s just trying to continue his exercise. But if he knew WHY we had to stop – if he could understand in any sort of way – that would be hugely helpful.
  • I wish that he knew that, on the occasions that I can’t play with him, it’s not because I don’t want to. It’s because I HAVE to do something medically necessary, whether it’s change my pod or bolus for dinner, that takes my attention away from him.
  • And I wish that he knew that sometimes, diabetes can take a mental toll on me and my mom, and that there’s not much he can do about it besides continuing to be his sweet self. It’d certainly be convenient for him to realize that his impish side just exacerbates things when one of us is dealing with a stubborn high or shaky low.

That’s my list of wishes, but there’s one thing that I never had to wish for or teach Clarence when it comes to diabetes…and that’s his innate ability to bring us comfort in just about every situation with his mere presence.

I’ve said it before and I’ll say it again: Attaboy, Clarence.