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.

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My T1D New Year’s Resolutions

New Year’s resolutions are kinda tacky and silly, especially ones that are broken three weeks into a new year. Even so, I like to put a little thought into how I can better myself when a new year begins, so I guess I’m the sort of person who (somewhat grudgingly) tries to make a commitment to some form of self-improvement around this time each year.

Happy New Year!
Are you making any New Year’s resolutions?

While some of my resolutions are going to remain private, I’d like to share others – specifically, my diabetes-related ones – here because I think it’ll be the first step in making them a reality in 2019. Here’s what I’ve come up with so far, along with some explanations why they’re my goals so far:

  1. Improve my A1c – This is kind of a cop-out resolution, because let’s face it, a better A1c will never not be a goal of mine. I’m in a better range now than I was a few years ago, which is a huge accomplishment in itself. But I know I can do more, and I have the drive and desire to get myself below 6.5 this year.
  2. Make time for more IRL T1D hangouts/meet more T1Ds – I can’t be the only one who scrolls through Instagram and feels pangs of jealousy when I come across photos of large groups of T1Ds hanging out, right?? A significant percentage of these hangouts are the result of T1D conferences, which I’m rarely able to attend. They either cost too much money or take place at an inconvenient time, so I’m forced to miss out on some valuable face-to-face time with people who understand me in a unique way. It’s definitely a bad case of FOMO. As a result, I want to be proactive and try to arrange more meetups in my area in the next year.
  3. Incorporate more self-care into my routine – 2018 was such an insanely busy year. I felt that, at times, I was getting pulled into too many directions and had obligations to so many people that I could barely keep up, let alone make any time for myself to catch my breath. I had days here and there where I could sneak away for an hour or two and treat myself to a massage or exercise at the gym, but I really didn’t have a single mental health day in which I unplugged from everything and kicked back. Though I know 2019 will be just as hectic, if not more than 2018, I still want to be sure to make more time for myself, even if it is just for five or ten minutes a day.

Now that I’ve shared my resolutions, I feel like that will hold me accountable for making a good-faith effort in accomplishing them. And I also feel that they will be good things for me to write about throughout the next year, so I can keep both my audience and myself informed of my progress.

And with that, it’s my final blog post of 2018. Here’s to 2019, a year that will be filled with plenty more content from Hugging the Cactus. To you, my readers, I wish you a healthy and happy new year!

My 21st Diaversary

Today, Christmas Eve, is my 21st diaversary. That right, my diabetes is officially “legal”. You can bet that I’ll be celebrating with a special shot tonight – and no, I’m not talking about the insulin kind of shot.

Last year, I wrote about the sheer joy I felt as I hit my 20th diaversary. While I certainly do feel joyful this time of year as I greet another diabetes milestone (and because I’m wrapped up in the spirit of the season), I also can’t help but feel a pang of sadness.

The fact of the matter is, I’ve lived with diabetes for 84% of my life. And that’s a hard pill to swallow.

Happy birthday to you!
A birthday card to my diabetes.

I dream of a single day of normalcy. I want a day in my adult life in which diabetes isn’t at the forefront of my mind. Sure, I had just over a thousand days like that in my childhood…but the thing is, I don’t remember them. So they don’t count.

What I would give to have a solid, 24-hour stretch in which I don’t have to feel pricks from needles or hear buzzing, beeping devices. I wouldn’t have to feel as anxious about my blood sugars as I do on most days, and I would eat whatever the hell I wanted without a care in the world.

It sounds like a small ask, one day without diabetes, but at this stage in the game, it’d just be miraculous.

So on this day that is doubly special to me, I’m accepting that I feel a bit more negative than I did last year. There’s nothing wrong with that. In fact, it feels good to admit it, rather than force myself to write a bubbly blog post that simply celebrates 21 years of diabetes.

I’ll celebrate my own way today and enjoy the most wonderful time of the year, knowing that my little diabetes funk will pass on its own.

With that said, dear readers, I wish you a fantastic Christmas. Spend the day doing whatever brings your hearts happiness, and remember to take care of yourselves.

Don’t Feel Sorry About my Diabetes

Today’s blog post is going to be short and sweet, and about a subject that I think every person with diabetes deals with whenever they tell someone new about their diabetes.

It doesn’t matter how diabetes comes up in conversation. Whether it’s in a joking, serious, educational, happy, sad, or angry manner, the person I’m talking to almost always says…

“I’m sorry.”

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I’m not sorry that I have diabetes, so you shouldn’t be, either.

Sometimes, I think it’s because society has instilled this weird reflex in people to apologize for something that they didn’t do. Other times, I think it’s because people just don’t know how else to respond to something that may be sobering or grounded in reality. But the simple fact of the matter is…

People need to stop apologizing to me, and other people with diabetes, for having it.

Here’s why:

  1. It doesn’t make sense.
  2. We weren’t given a choice – it’s a simple truth that we’ve learned to accept.
  3. It makes me feel strange, because it’s almost like the other person is taking accountability for my diabetes.
  4. I believe that human beings apologize too much, in general, and it diminishes apologies when they matter most or are most sincere.
  5. I’m not sorry that I have diabetes, so why should someone else be?

While I genuinely empathize with and appreciate people who apologize as a knee-jerk response, I’m just here to gently tell them that it isn’t necessary. Save “I’m sorry” for times that it’s warranted, and not for something like having diabetes, a matter in which no one has a choice.

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.

This Thanksgiving, I’m Thankful for…Diabetes?

This post originally appeared on my blog at ASweetLife.org on November 26, 2013. It’s hard to believe that I wrote it nearly five years ago, but with Thanksgiving occurring tomorrow, I thought it would be appropriate to revisit it since it captures my feelings about diabetes this time of year. Of course, life has changed quite a bit in the last five years, so I’ve made a couple amendments (below, italicized) to the original…

Each year around Thanksgiving, I think about the things that I am thankful for in life. Some obvious answers come to mind: my parents. My brother, my boyfriend, my dog. The fact that I am able to attend an amazing college. The roof over my head and the food on my plate. The list could go on and on. I’m sure most of my answers are unsurprising.

But is it weird that I’m thankful for diabetes, too?

Don’t get me wrong here. Oftentimes, I resent that I have to deal with the burden that is diabetes on a daily basis. I cry about it, I get angry about it, I curse about it. I wish that it didn’t impact me or my loved ones the way that it does. I’m all too aware, however, that I cannot change the role diabetes plays in my life. All I can do is accept it. When I did that and truly thought about what acceptance means, I began to think of why I might feel blessed in some bizarre way to have diabetes.

For starters, my diabetes has brought me closer to my family. My mom and I are able to relate to each other on a different level because of it. My dad and my brother show concern and unrelenting support for us that might not be the same if Mom and I did not have diabetes.

Sometimes, I think about how even though my diabetes seems to have a mind of its own, it adds a certain degree of control regarding some aspects of my daily life. It helps me get into a routine that is pretty static. It relies on what I choose to feed myself; in this way, it motivates me to make the right choices when it comes to my diet.

tgiving

And it has brought some amazing opportunities my way. Without diabetes, I would not have become president of the UMass Amherst chapter of the College Diabetes Network. I would not have discovered the Children with Diabetes: Friends for Life conference that I attended in Disney this past summer, where I made some awesome friends who keep in touch with me. And I certainly would not have begun blogging for ASweetLife.org. This experience itself has allowed me to get in touch with my feelings regarding diabetes to a greater extent. I have been able to explore my interests as an individual who loves to write. I have the pleasure of speaking with a wider variety of people within the diabetic community and hearing individual stories that I might not have ever heard.

I never would have guessed that a mere five years after writing this post, I’d be writing content for my very own diabetes blog. The creation of Hugging the Cactus is a huge diabetes-related accomplishment itself, but I’m reflecting on other diabetes changes I’ve experienced and how I’m thankful for them…so many come to mind. My OmniPod insulin pump, my improved A1c levels, new friendships formed…I’ve come a long way, and I’m grateful for every single positive experience that diabetes has brought into my life.

That’s why I’m seeing diabetes as something to be thankful for this Thanksgiving. I long for the day where diabetes is cured and I no longer have to think about it. But for now, I want to make the best out of something that could be perceived as the worst.

With all that said…enjoy your Thanksgiving holiday! No matter how you choose to celebrate it, remember that you are loved, you matter, and there’s people in your life who are endlessly thankful for your love and light.

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!

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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.