Spare a Rose this Valentine’s Day

So Valentine’s Day is tomorrow. Perhaps you loathe the holiday of love and celebrate it solo, or choose to use the day to express your gratitude for your close friends, in the style of Parks and Recreation’s invented holiday, Galentine’s Day.

If you’re in a relationship, you might have an extravagant, candle-lit, five-course dinner planned with your loved one. Or maybe you’ll keep it a bit more simple and say “I love you” to your sweetheart, with a thoughtful card, box of chocolates, and a dozen roses in hand.

Whether or not your scenario includes a dozen roses, though, consider this:

What if you received 11 roses in your bouquet, instead of 12? What if you knew that a rose was spared because the value of that flower helped support a child living with diabetes in a less-resourced country?

I bet you wouldn’t mind getting one less rose in that case.

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This Valentine’s Day, please consider sparing a rose as part of your celebrations. Life for a Child is a nonprofit charity that created the Spare a Rose campaign. They’re able to support nearly 20,000 young people living with diabetes by using donations to buy them insulin, syringes, clinical care, diabetes education, and more. Anyone who’s familiar with diabetes realizes that access to care, education, and resources is critical to living a healthy and normal life. No one would want to deny another, especially a child, from having to forgo these resources because of the financial burden associated with them.

Spare a rose and save child this Valentine’s Day.

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Why I’m Afraid to Turn 26

I’ve never been afraid of my birthday. In fact, I’ve looked forward to it every single year because of all the fun things that distinguish the occasion. I’m lucky to be able to say that each third of May of my life has been filled with celebration, gratitude, and cake – what’s not to like about that?

But this year is different for me. I’m turning 26, which means I’ll no longer be eligible for dependent coverage under my parents’ health plan. I’ll need to enroll in my employer’s plan and figure things out from there.

to my best buddy,
I don’t want a cake or presents for my birthday this year. I’d rather affordable health insurance.

This is terrifying to me. Why?

I’ve heard the stories.

Alec Raeshawn Smith’s story sticks out to me the most. He researched his insurance options and when he realized that the out-of-pocket costs for insulin were exorbitantly high, he decided to forgo insurance because it seemed more manageable to him.

He passed away just one month after going off his mother’s health insurance plan.

His family believes he was rationing insulin in order to survive until he could afford to buy some more.

There’s nothing about Alec’s story that isn’t tragic. It’s especially sad and frightening to someone who is about to begin navigating the confusing, expensive, and ruthless world of health insurance.

I’m hoping that I never get to a point where I need to pursue the dangerous “solution” of rationing insulin. But I’m also hoping that the biggies of insulin manufacturing – Novo Nordisk, Eli Lilly, and Sanofi – wake up and realize that they’re doing more harm than good. In 1996, just one year before I was diagnosed with diabetes, one vial of Humalog insulin (which I’ve used and continue to use since diagnosis) cost $21. Fast-forward 20 years, and Humalog costs skyrocketed to twelve times the cost at $255 per vial. Why? What could possibly justify this? How could anyone say that it is right for someone with diabetes who needs insulin to survive, and who didn’t ask for diabetes or do something to cause it, to pay that much on a regular basis to stay alive?

One thing is for sure: Insulin prices CANNOT stay as high as they are. There’s simply no reason for it, other than shameless, disgraceful greed.

And that is the simple truth of why I’m afraid to turn 26 this year.

What is “Controlled” Diabetes?

There are few word pairs I loathe more than “controlled” and “diabetes”.

How the hell can diabetes be “controlled”? It’s not a video game to be played with a controller. There’s no character selection or “start” button. And it most definitely can’t be shut off with the flick of a switch.

On the contrary, it’s my opinion that diabetes is a bit of a wild beast that can’t simply be tamed. It doesn’t care if you follow the same routine every single day – it’ll act up for no damn reason whenever it pleases, much to the dismay of a person dealing with it.

Diabetes will do what it wants, when it wants. It will wake you up in the middle of the night because of a low blood sugar. It can throw your whole day off track because you make your plans around it. Diabetes itself comes with so many variables, between the devices and the effectiveness of medication, that it can oscillate no matter how hard you try to keep it steady. How can something like that possibly be under control? People with diabetes, like me, are given tools that are intended to help manage diabetes, certainly, but we have yet to receive something that allows us to influence it completely.

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If I had to take a stab at guessing what people thought “in control” diabetes looked at, it would be more than just the “perfect” flat-lined CGM graph. It would be more than going to bed each night and waking up every morning, having just enjoyed an uninterrupted, sound night of sleep. It would be more than having the freedom to make spur-of-the-moment choices regarding a daily routine or diet.

But for now, I’ve accepted that my diabetes is something I manage rather than control…but I also accept my refusal to let it control me.

Beyond Diabetes

This November, I participated in the #HappyDiabeticChallenge on Instagram. This challenge centered around daily prompts to respond to via an Instagram post or story. I’ve decided to spread the challenge to my blog for the last couple days of National Diabetes Awareness Month. As a result, today’s post topic is beyond diabetes.

I can’t believe that today is the final day of November, A.K.A. National Diabetes Awareness Month. In a way, I’m relieved. After all, diabetes advocacy can be exhausting. I’ve kept up daily Instagram posts, in one way or another, in response to the #HappyDiabeticChallenge. I’ve tried to keep all of my blog posts this month on theme. I even participated in a fundraising live stream on YouTube, which was an anxiety-provoking yet exhilarating event all on its own.

Needless to say, I’m looking forward to dialing it back down, temporarily, for the month of December. I won’t stop advocating, but I will take a small step back from it so I can recover and process everything from the month in my own time.

It’ll be a good way of reminding myself that I’m more. More than just this stupid chronic disease. There’s so much more to me than diabetes: I’m a daughter, a sister, a girlfriend, a best friend. I’m a dog lover (despite being allergic to most of them). I’m a young professional. I’m a millennial (who proudly owns the moniker). I’m a Disney fanatic and Harry Potter obsessive. I’m a creative and passionate person who cares about a lot of different people, things, and projects.

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I am more than my diabetes.

I’m beyond my diabetes. I prove that to myself each day by living my life unencumbered by it. When it knocks me down, I always get back up to remind it that I’m the boss.

Beyond National Diabetes Awareness Month is a broader realization that I’m a bit burnt out by this hardcore advocacy. And that’s okay. I’ll take a breather and remember to enjoy life more, because I know that I’m beyond diabetes.

Adulting with T1D

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!

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Most people who know me understand that I have a bit of the Peter Pan syndrome going on – I don’t want to grow up. I’d rather embrace my inner child and shun the responsibilities associated with adulthood. That’s what I’d like to do, anyways.

But the harsh reality is that I’m a woman in her mid-20s who does, indeed, have quite a few responsibilities in life. In addition to the gamut of obligations that most other adults have on their shoulders, I have an extra-special one – yup, you guessed it: diabetes.

I didn’t realize just how much my parents managed my diabetes until I got to college. Suddenly, it was on me to make sure I had enough supplies at all times, to make doctor’s appointments for myself when I wasn’t feeling well, and to do basic things like feed myself regular meals. It doesn’t sound like much, but when you’re adjusting to college life, meeting new people constantly, and making your own choices as to how you spend your spare time…then it becomes a big deal that can feel overwhelming at times.

The shift in responsibility was tough at times, but I made the adjustment and learned to hold myself and myself alone accountable for all aspects of my diabetes care and management. And I’m starting to prepare myself for yet another big change coming in about six months. On my 26th birthday, I’m going off my parents’ healthcare coverage and will need to enroll in my company’s plan. There’s going to be a learning curve there as I discover what will and what won’t be covered under my new plan, and I’m teaching myself to accept it. After all, it’s unavoidable, so like everything related to diabetes, I’m just going to choose to embrace the challenge with a smile on my face.

Diabetes and Honesty: Don’t be Afraid to Speak Up

It’s said that ignorance is bliss…but as I recently (re)learned, ignorance can cause fear and misunderstanding in times that it’s better to be honest.

The lesson was hammered into my brain after fibbing to my significant other about my blood sugar a couple of weeks ago. It was a Saturday night, we had spent the day moseying around the city, and we were looking forward to a chill evening doing a whole lot of nothing. We decided to get into a collaborative card game while we watched the Red Sox play against kick the Astros’ butts.

As we set up the game, I knew my blood sugar was high. But I ignored it, figuring that my insulin would kick in soon and bring my levels back down to normal. I should’ve known that it wouldn’t be so simple (is ANYTHING ever simple when it comes to diabetes?) because after an hour and a half, no progress was made on the BG front and my mood was worsening as a result of it. My partner, ever-attentive, asked me more than once why I seemed so cross. He even directly asked if it was related to my blood sugar, and I…didn’t exactly tell the truth.

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Okay, I lied! But it was only because I didn’t want him to worry. I was already worried enough for the two of us. And I thought I was doing the right thing here. I really, truly thought my blood sugar would come down in no time at all, and I hate, hate, HATE using anything related to my diabetes as an excuse for my behavior…so rather than admit what I was going through, I brushed it off, which only exacerbated everything. Not my proudest moment.

As the night went on, we got deeper into the game and my blood sugar climbed higher. I was beyond agitated at this point, and my heart certainly wasn’t into the game. Besides neglecting to open up about my blood sugar problems, I’m also ashamed of my lack of interest in the card game. In hindsight, the healthy thing to do in this situation would’ve been to have faith in my treatment decisions and try to enjoy myself in the meantime. But I was too caught up in the negative mindset that the high blood sugar put me into, and unfortunately, it marred an otherwise perfectly nice night.

The next day, when my blood sugar situation was back to normal, I came clean to my boyfriend. I think he was a bit irked with me for hiding the truth from him, but I also think that he understood a little more after I explained why.

In this case, diabetes won…at least it did in that brief moment in time. Between ruining my mood and causing a mild rift between me and a loved one, I felt pretty damn defeated by it. In the long run, though, I think this experience will be more of a boon than a bane, because it reinforced the notion of honesty being the best policy – even when it comes to diabetes.

 

Diabetes in the Renaissance

Can you imagine having diabetes in the 14th – 17th centuries??? The answer to that is no, you probably cannot…because without modern medicine, it wouldn’t have been possible for a T1D to survive in the Renaissance. And ‘cuz, well y’know, the Black Plague was a thing back then and lots of people didn’t survive.

But fortunately, we’re living in the 21st century, which means we have access to all sorts of things that help us manage diabetes. Still waiting on that cure, though.

Where am I going with all this?

I wanted to recount my recent trip to a Renaissance festival, in which I spent a day taking care of my diabetes while jousting tournaments, Shakespearean performances, and drunken debaucheries took place all around. And you know what? It was easier than I thought it’d be.

Sure, I didn’t check my blood sugar with my meter as much as I should have. My inner germaphobe was reluctant to rely on my meter for accurate results, seeing as there weren’t really any hand-washing stations on the fairgrounds. (Remember, this is the Renaissance…things were a little grimier in those days.) I used hand sanitizer whenever it was available to me to keep my hands clean, but it was a bit of a challenge, especially when my mitts got caked in mud post-ax throwing.

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Enjoying a turkey leg alongside a serving of Chardonnay at the Renaissance Faire – y’know, to keep things classy.

Thankfully, I had my Dexcom G6 to help keep me on track as I ate my way through the fictional 16th century village. I was jazzed that several low-carb options were available to me; throughout the day, I snacked on a giant turkey leg, a Scotch egg, and spiced nuts. Maybe a “diabetes-friendly” diet would’ve been easy to follow in the Renaissance? Though I will admit that I gave in to temptation and ate (devoured) a slice of cheesecake. On a stick. And dipped in chocolate. Not low carb, but super YUM.

So even though my diet was far from nutritious at the ye olde faire, I think that all the walking around and sharp-objects-throwing kept my blood sugar in check, much to my relief. My experience at the fest is just another example of how diabetes won’t prevent me from living life to the fullest, whether it’s in the reality of 2018 or the fantasy of the 16th century.