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.

Who Inspires Me from the DOC

It’s November 22nd which means that it’s Day 22 of the Happy Diabetic Challenge! Today is called #FollowFriday and we’re encouraged to share who inspires us from the diabetes community. Rather than capture the dozens upon dozens of names in a blog post (because truly, there’s practically an endless list of people who inspire me in the DOC), I’m going to write about what I think makes someone in the DOC inspiring…

I’ve lost track of how many years I’ve been involved with the diabetes online community (DOC).

It’s somewhere between five and eight. Regardless of what the true number is, I can tell you this: I’ve “met” and interacted with countless people who’ve shared their stories with me. Each story is unique and marked by different struggles and victories, but the common theme is diabetes.

But what else do these storytellers share that make them so inspiring to me?

Happy Independence Day!
Chances are that if you’re reading this post…you’ve inspired me in some way. Thank you.

Here are three qualities of people with diabetes who inspire me:

  1. Vulnerability. I’ve come to value this more than just about any other trait when it comes to talking about diabetes in an online space. Nothing makes a person more relatable (or more human) than when they speak uninhibited and honestly. In a social media world where everyone is so concerned with capturing and filtering the “perfect” photo with the “flawless” caption to go with it, I find that it’s the stories that are raw and obviously imperfect that pack more of a punch. It’s important to stay grounded, and those who aren’t afraid to share their tribulations as much as they share their successes are truly inspiring to me.

2. Kindness. The Internet can be harsh and judgmental. (Okay, that’s a total understatement). It’s brutal out here in cyberspace, and unfortunately, the DOC isn’t immune to all brands of savagery. In the past, I’ve seen disputes erupt because of hateful comments made about all aspects of life with diabetes. So when I notice thoughtful, supportive, and downright nice comments between perfect strangers in an online space, it restores a bit of my faith in humanity. Those who take the time to send a tweet to another PWD in need or who use their presence online to do some good don’t go unnoticed by me, and I applaud each and every single person who does their best to reduce the negativity in the diabetes online community.

3. Willingness to listen and learn from differing perspectives. Those of us who live with diabetes can be wildly, passionately opinionated. Pumps! No, MDI! Carbs! No, keto diet! Your diabetes is just like mine! No, it’s not! – Those are just a few examples. While some may be quick to judge others for dealing with diabetes in a way that is different or just plain “wrong” to them, I’m far more impressed by those who remain open to having conversations and learning from those who disagree. After all, what matters most is that a person finds what works best for them. It shouldn’t matter that it’s different from what I or anyone else might do. So I really admire those who are able to put aside differences and focus on learning and growing from others.

Thank you to each and every single person out there in the diabetes online community who possesses one or all of these qualities. This means you’ve inspired me in some way, and I am incredibly grateful for you and your willingness to share part of yourself with strangers online. Keep doing what you’re doing and I can guarantee that you’ll continue to inspire many more people.

My Take on Diabetes and Support

It’s November 20th which means that it’s Day 20 of the Happy Diabetic Challenge! Today’s prompt is “biggest supporter”. Since it’s impossible for me to identify a single person as the biggest source of support with my diabetes, I decided to write about how my thoughts on diabetes and support have changed over the years.

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.

HUGGING THE CACTUS - A T1D BLOG
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.

Support from others is truly powerful…but above that, learning to rely on others – learning how to best support myself, really – is more than that. It’s magical and absolutely enhances the quality of my life with diabetes.

Where I’m From and What my Diabetes Community is Like There

It’s November 18th which means that it’s Day 18 of the Happy Diabetic Challenge! The prompt for today was fairly simple – state where you’re from – so I decided to delve a little deeper and explain what my diabetes community is like at home…

Home is where the heart is, and it just so happens that I’ve got quite a diabetes community there, too.

I spend most of my time in Virginia these days, but I’m originally from Massachusetts. Growing up in that state shaped me as the human being that I am today, and it’s also where I had a total change in perspective when it comes to diabetes, community, and support.

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A map of Massachusetts, with a few diabetes accessories sprinkled in there.

I’ve said it many times here, but throughout my youth, I had my mom and my aunt as my type 1 influences in my life – that was it, and that was all that I needed and wanted.

Or so I thought.

When my feelings on diabetes support changed in college, I quickly discovered the value in fostering a sense of community wherever I go. So I made it a mission upon graduating to make sure that I maintained diabetes connections at home. It felt especially important as I was about to undergo another major life transition: joining the workforce full-time.

And I’m glad I fulfilled that goal. Through the power of social media, I attended a handful of diabetes meetups in the last few years that provided that sense of belonging that I yearned for and introduced me to many local T1Ds.

So as you may be able to imagine, it’s been tough for me to still receive invites to events and gatherings that I can no longer readily attend since I’m in a different state most of the time.

This is why I finally decided to do something about it. Feeling inspired by the spirit of National Diabetes Awareness Month, I found a group that meets up semi-regularly in my new location. I was nervous about it, but I made an introductory post on their page. I explained that I work from home; as such, it’s hard meet new people. And not only would I like to connect with other T1Ds, but I’m also interested in volunteering in the area.

My “bold” move paid off. Within hours, several people had commented on my post and made it known that I could reach out to them whenever to arrange a lunch or explore the city. I haven’t taken anyone up on it yet (with the Thanksgiving holiday being so close and all), but it’s really nice to know that the offers are there when I’m ready to take them up on it.

Even though the concept of “home” has been a little shaky in the last year, I know this much: Wherever I wind up, I’ll find and nurture a diabetes community there because people who just get it make even the strangest of places feel a whole lot more welcoming…and like home.

The Meaning Behind Blue Fridays

It’s November 15th which means that it’s Day 15 of the Happy Diabetic Challenge! Today’s prompt is about blue Friday. Umm, I admit I had to do some research on this topic, ‘cuz I never really understood why people with diabetes are encouraged to wear blue on Fridays…

…I’ve never even really known the reason why the color blue was chosen to represent the diabetes community as a whole.

So naturally, I decided to do a little research and find out answers to my questions.

First up: Why is blue the official “diabetes color”?

The answer is simple, but satisfying. Until 2006, there was no color or symbol that represented diabetes. The United Nations played a role in selecting a blue circle to change that. Blue was picked because of its unifying reputation: It represents both the sky and the flag of the United Nations. Since diabetes is an issue that affects individuals around the globe, it made sense to choose a circle as a symbol; thus, the blue circle was born.

What about the second question: Why “blue Fridays”?

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Sporting my blue, the hashtag, and the universal symbol for diabetes awareness!

The answer to that was also straightforward. The “blue Fridays” concept started a few years ago as a social media initiative intended to bring awareness to diabetes. It’s really easy to participate. All you need to do is snap a photo of yourself wearing blue on Fridays throughout the month of November. Add the hashtag #BlueFriday and maybe a caption about what diabetes awareness means to you or something else relevant to the meaning of diabetes awareness month and post it on all of your social media channels. That’s it! I love scrolling through feeds on Fridays in November and seeing the waves of blue all throughout. It’s a visual reminder of just how many people are affected by diabetes, and how our community finds strength through numbers.

Before you go, I’ve got an exciting announcement: I’m appearing on the podcast, “Ask Me About My Type 1” this Monday, November 18th!!! The wonderful host, Walt Drennan, asked me to be a guest and I immediately said yes. One of my dearest friends, Emma, is also on the show as my “Type None” guest and the three of us had an amazing conversation about diabetes and support. The episode will be available Google Podcasts, Spotify, and the Apple podcast app. Why not spend some time this weekend, though, checking out the complete Season 1 of the podcast as well as what Walt has recorded so far for Season 2? You’re in for a real treat as he’s had fantastic guests on for both seasons. I’ll post the link to my episode across social media when it debuts on Monday and you can visit the podcast website here to learn more about Walt and the series.

 

Why Every Person with Diabetes Needs a Medical ID

It’s November 13th, which means that it’s Day 13 of the Happy Diabetic Challenge! Today’s prompt is about medical IDs. Naturally, I started thinking about my history with medical ID and why I think they’re so important for people with diabetes…

My mother and grandmother instilled a love of jewelry in me at a very young age. Rings, bracelets, necklaces, earrings…baubles of all kinds make me happy. So you’d probably assume that wearing a medical ID would be no big deal for me, since I’m almost always sporting something sparkly on my body.

Well, think again.

When I was a kiddo, I HATED wearing my medical ID. It was a long, silver necklace with a hexagon-shaped charm dangling from it. One side showed the caduceus (that medical snake symbol) and on the reverse was my “in case of emergency” information. I wore this necklace for about a decade before I lost it, and it stayed hidden under my clothing most of the time. It was ugly, and to my young and naive brain, it was also an unnecessary reminder of the chronic illness I dealt with each day.

The necklace seemingly vanished from thin air one day (I swear I didn’t lose it on purpose, because I knew that just tossing it would piss off my parents) and I went a few months without a medical ID. It was so freeing! But by the time I turned 16 again, my parents had a replacement ready for me. This time, though, they were more careful when choosing the ID and went with something a little more fashion-forward: They had a circular silver charm engraved with my contact information, and it was a part of a pretty silver bracelet with many other charms attached to it (a book, a dog figurine, and a heart were among them), much like the charm bracelet my mother had received from her own parents on her sixteenth birthday.

I loved how discreet this charm was – it blended in well with the rest of the charms on my wrist. A little too well, though. The bracelet served a dual purpose as a medical ID and a fashion statement, and to be honest, it was almost impossible to discern the medical ID from the other charms encircling it.

So I took it upon myself to get something separate from the charm bracelet, something that was a standalone medical ID but wasn’t a total eyesore.

Enter my Lauren’s Hope medical ID bracelet, which I’ve been wearing for about three years now.

I love this bracelet. It is very obviously a medical ID, but it’s delicate and dainty. I wear it on my right wrist, separate from all my other bracelets, and I love that you can see all of my essential information engraved on the back of it with just a quick flip of the charm.

Now, I’m going to guess that you’re saying, okay, Molly, we get it…stop summarizing your medical ID history and tell me why it’s so important for a person with diabetes to wear one.

You got it!

It’s important for people with diabetes to wear medical IDs – at all times – not just because it’s helpful to first responders and bystanders in case of emergency, but also because it should provide a source of comfort and reassurance to a T1D.

I mean, I know that I feel safer whenever I go out in public wearing my medical ID. I’m a paranoid person to begin with (streams of “what if…” constantly swim through my mind), but I can’t help but wonder what might happen if I didn’t wear my medical ID and an emergency struck. Would people assume that I was drunk and not help me? Would they not realize the severity of the situation? Would I be able to get myself out of whatever situation it may be? I don’t want to risk a negative answer or outcome to those questions, so of course I wear my medical ID everywhere I go. I know it gave me great peace of mind when I traveled to Las Vegas with my girlfriends last year; if I’d faced a situation in which they couldn’t help me in time, at least someone near me could see my medical ID and learn that I have T1D (and figure out how to help me from there).

So with that said, I’ve come to see the medical ID as a security blanket and just as much of a crucial piece of equipment as my blood sugar meter or Dexcom. If you don’t have one because you were stubborn like me and didn’t want the reminder of your diabetes, please…do me a favor and check out your options online. I promise there are so many more styles than there were a couple decades ago, and there’s something to suit everyone: You don’t have to like shiny or sparkly things in order to wear a medical ID.

Oh, and before I go: Tomorrow is WORLD DIABETES DAY! I’ll be celebrating by doing a “diabetes in real time” segment on my Instagram. Tune into my profile throughout the day to catch it! Use the Instagram link at the top right hand corner of the website to get there, or navigate to Instagram on your own and find my page by searching my handle: @huggingthecactus.

The Best Meal for My Diabetes

It’s November 11th which means that it’s Day 11 of the Happy Diabetic Challenge! Today’s prompt is about go-to meals. What’s the best meal for my diabetes? The answer might surprise you…

I don’t have a go-to meal for my diabetes. Does that surprise you?

I know plenty of people from the DOC who eat virtually the same things each day for breakfast, lunch, and dinner. That seems to work well for those people, so more power to ’em!

On the other hand, I do my diabetes best when I eat a wide variety of foods. My ideal day of food will consist of a medium amount of carbohydrates, a good mix of fruits, veggies, and proteins, and probably a little something “naughty” – a square of dark chocolate or a cookie for dessert. I eat around 20-40 carbs at breakfast and lunch, and anywhere between 30-60 carbs for dinner. It really just depends on what I have on hand in the kitchen and how well-behaved my blood sugars are on a given day.

I suppose that, if I had to describe my go-to diabetes meals, it would look a little something like this:

  • Breakfast – Either a smoothie with protein powder, almond milk, and frozen fruit; eggs with toast/an English muffin and veggies; or plain oatmeal made with water, cinnamon, and sugar-free syrup
  • Lunch – Either a salad with tofu/deli meat and a piece of fruit (sometimes with peanut butter spread on it) or a sandwich with cut-up veggies and hummus with a piece of fruit
  • Dinner – This one varies the most, but my usual is a protein like chicken or turkey with a large serving of veggies and maybe a scoop of brown rice, quinoa, or a bread on the side, with a little something sweet to end the meal
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Want to know what dish is pictured? See below for details, including the recipe!

I’ll share my current dinner obsession with you: roasted vegetables with sweet Italian sausage. I cut up a carnival squash (the yummiest variety out there – you can find it at local produce stands), bell peppers, a yellow onion, and a few baby potatoes, toss it all in olive oil, salt, pepper, and thyme, and spread it on a sheet pan. I add whole sweet Italian sausages on top and roast it all for 30 minutes at 425. Then I tear up some kale, toss it with olive oil and just a dash of salt, and throw that on top of the veggies and sausage and cook everything for an additional 15 minutes, turning over the sausages before sliding the pan back into the oven. And that’s it. It’s so tasty and easy to make, and very gentle on my blood sugars – which usually allows me to indulge a bit more on a sweet at the end of the meal.

What’s the go-to meal that works best for you and your diabetes?