Favorite Things Friday: “The World’s Worst Diabetes Mom” by Stacey Simms

In this edition of Favorite Things Friday, I share a great new book that I just read: The World’s Worst Diabetes Mom by Stacey Simms!

Disclosure: I bought this book on my own and this review is unpaid. I am writing this to share an excellent book that was written by someone I consider a personal friend and wonderful diabetes advocate. This is my honest review of the book.

Hey, Cactus friends! Welcome to another Favorite Things Friday post. I’m really happy to write this one up, for a few reasons: 1) Stacey Simms is a terrific human being and I’m glad we met IRL for the first time a few years ago, 2) I enjoyed reading her personal experience with diabetes, and 3) I think this book is pretty important and I’d like to share the reasons why with you all.

Oh, and it’s also got an awesomely intriguing title that will definitely make you want to know why Stacey is publicly declaring that she’s the world’s worst diabetes mom…a bold statement, indeed!

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Me and my new book!

So I don’t know about you, but I had no idea until a few years ago that there are actually a LOT of diabetes books out there. Some are memoirs, others are guides. And there’s even some that address specialty subjects, like pregnancy and diabetes.

Stacey’s book is a fusion of a memoir and a guide. It’s all about her son Benny’s diabetes diagnosis and the lessons that she and her family have learned over the years. Each chapter focuses on a different topic – examples include going to diabetes camp, playing sports with diabetes, and vacationing with diabetes – and ends with a list of questions that readers can ask themselves to help them navigate these specific scenarios.

What I liked so much about this book is that I learned a lot from it: It’s not just for those who are new to diabetes. (I’ve had diabetes for more than 20 years and I am constantly learning new things!) My eyes were really opened to the perspective of a parent whose child was just diagnosed with diabetes. Not only did it help me understand the emotions my parents were probably experiencing throughout my childhood, but it also proved to me that loved ones who don’t even have diabetes go through a lot, too. They might not have to physically endure the pokes and prods or deal with the exact same feelings that those of us with T1D do, but that doesn’t mean that they don’t feel immense guilt or worry for us because they just want to do everything in their power to help ensure that we live normal, fulfilled lives. That’s an awful lot of pressure to put on oneself.

Stacey’s honesty and transparency with her family’s diabetes experience gave the book a powerful emotional punch. She owns up to all the times that diabetes has made her cry tears of sadness or yell from frustration. And refreshingly, she doesn’t shy away from sharing the past mistakes and less-than-ideal scenarios that her, Benny, and her family had to work through. I was appreciative of that because, like Stacey, I feel that there is too much of a focus on “perfectionism” when it comes to diabetes, especially these days. It’s an impossible standard that many of us set for ourselves when we should put more attention on the little victories we achieve along the way on our individual diabetes journeys.

In the final chapter of the book, Stacey shares more of her thoughts on the pressure to be perfect. The following is my favorite passage from the book:

After reading this book, you know I don’t believe in the pursuit of diabetes perfection. Even so, I’m still surprised at how many people expect it, who strive for it and feel guilt or shame because they feel they don’t measure up. We were lucky our endo told us right away that T1D management is just as much art as science. Over the years, I’ve come up with my own philosophy about Benny’s diabetes care: Don’t worry about perfect; go for safe and happy. Do I love my child? Am I doing my best? Is he happy? Is our endo happy? Yes. Then let’s keep working in that right direction.

I’ve shared that thought with parents who’ve then burst into tears. That’s not a joke. The realization that a happy, healthy child is enough can be a revelation.

By now, I’m sure you’re ready to pick up a copy of the book and find out from Stacey herself why she gave herself the “worst diabetes mom” moniker (because yes, I deliberately did NOT explain it in this post because I think it’s best explained by the author). You can pre-order a copy of the book here, and to hear more from Stacey, be sure to check out and subscribe to her podcast “Diabetes Connections”, available on the Apple podcast app, Android, and any other podcast app of your choice.

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My Diabetes Woke Up When September Ended

Apparently my diabetes has a theme song.

“Wake Me Up When September Ends” by Green Day is the song in question.

The entire month of September, I felt like my diabetes was asleep or something: It didn’t respond the way it should have to my regular dosages of insulin. 

It was truly maddening. I did everything I could to get to the bottom of the mystery.

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It’s like my diabetes had it penciled in on its own calendar to get its act together starting on October 1st. 

I thought it was rotten insulin. Nope. I thought it was maybe a bad batch of pods. Nah. I thought maybe there was something wrong with me (well, yes, I’m definitely a weirdo but for real, there was nothing out of the ordinary going on).

I thought I was going to go nuts, trying to get to the root of the problem and coming up with potential causes only for each one of them to be shot down.

I was not happy to be taking higher doses of insulin than needed, and I wanted answers. Luckily for me, I had an appointment scheduled with my endocrinologist (my last one with her, for now, I hope) at the end of the month, so you can bet it was a major topic of conversation.

We came up with a plan for me to resume Metformin. I didn’t really want to, and there’s certainly more on my feelings about that to come in a future post, but I was desperate to reduce my daily insulin intake and find some sort of stability in my CGM graphs between meals.

So I started Metformin…again. And the difference was noticeable within days.

My diabetes woke up to the insulin doses I was taking, and I felt such an immense relief that I can’t really even describe.

Oh, and you’re welcome for getting that Green Day song stuck in your head.

 

Hugging the Cactus Turns Two!

It feels like just 365 days ago that I was celebrating the first birthday of this blog…

Oh, wait. It feels like that because it WAS like that.

So here I am, 365 days later, on the second birthday of Hugging the Cactus.

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Is my blog’s second birthday a good excuse to eat a cupcake today? (The answer is YES.)

Wow!

The second year of this blog hasn’t been without its challenges. To name a few:

  • Technical difficulties. I’m still learning a lot about how to successfully run a blog. It seems like the blogging world changes on the daily, so it’s tough to keep up with such a fast-paced environment. It’s far from easy – so let me give a shout-out to all the bloggers out there. Whether you have a small following or legions of fans, kudos to you for keeping at it because it’s a lot of work.
  • Time trouble. This year has been jam-packed for me – a move to another state, several weddings, and a whole bunch of personal shit – so, to be perfectly honest, I haven’t been able to devote as much time as I’d like to this blog.
  • Diabetes drama. Of course a girl who runs a diabetes blog has a life filled with diabetes drama. Between navigating the intimidating world of health insurance and coping with diabetes that is constantly keeping me on my toes, sometimes I straight-up just don’t want to write about it because I’ve already spent too much time merely trying to handle it. I struggle with finding the balance between oversharing and holding too much back.

Through it all, though, I keep finding myself returning to this blog time after time. As I’ve shared before, I’ve definitely questioned why I bother with it, especially when it feels like blogging is a semi-irrelevant medium in this day and age of micro-blogging on Instagram.

But I’ve started to answer those questions of self-doubt that I’ve posed to myself.

I think, at the heart of the answer, that the reasons why I keep doing this blog is because it both pushes me to take better care of myself, as well as it forces me to seriously examine how I live my life with diabetes. (And it also brings me closer to other people with diabetes, but that’s a reason that I’ve placed on a pedestal of utmost importance many times before – my desire to connect with other people with diabetes will never not be there.)

It pushes me to take better care of myself because it provides an active record of my thoughts, feelings, and struggles with diabetes that I can consult.

It forces me to look at those records and see how I can address the issues I’m experiencing, or prevent old problems from happening again.

This blog serves as the ultimate T1D diary for me – by documenting my life with diabetes, I believe that I can improve my quality of life with it…which makes it incredibly worth doing, IMHO. And if I can connect with and help others along the way? Well, that makes it even more precious and special to me.

So, happy 2nd birthday, Hugging the Cactus. Here’s to another year of thriving with diabetes.

What the…BEEP!

Beeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeep.

A long, unfaltering, high-pitched beep was emitting from something in the pharmacy. I saw heads turn in the vicinity as fellow customers, as well as myself, tried to identify the source of the noise.

I gulped. Could it be coming from me? Did my OmniPod fail right then and there as I was picking up my prescription?

WHAT THE...BEEP!
I wish an image could accurately portray just how annoying the beeping sound can be.

I anxiously dug through my backpack, my fingers searching for my PDM, until they met it. I pulled it out and prayed that all was well, that my pod was working as it should be.

A quick press of a button, and…I confirmed that my PDM and pod were, indeed, working properly. Simultaneously relieved yet still bemused by the noise, I put my PDM away while I scanned the area around me, determined to find out what was making a sound so similar to my OmniPod.

What was the culprit? Well, you know those little plastic boxes that drugstores encase things like razor blades in, to prevent theft? That was the thing emitting a blaring beep, in this situation. And like I’d initially assumed, it was coming from me: I was holding one of those boxes in my hand (because I was about to purchase razor blade replacement cartridges), and I’d unintentionally obscured the sensor that triggers the alarm to go off.

Whoops.

While it was nice to know that my insulin pump hadn’t failed on me, it was still somewhat embarrassing to discover that I was the cause of the ruckus, anyways.

Lesson learned: Keep those protective plastic cases in plain sight so I won’t have to misidentify what the beep is coming from.

Ye Olde…Insulin Pump?

Sometimes, you just gotta have fun with diabetes.

Which is why I didn’t think twice before writing “ye olde insulin pump” on my pod before attending a renaissance faire last week.

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Me, wearing a flower crown and showing off my ye olde insulin pump…just living my best life.

Yep, there I am, with my pod in full view, my Myabetic backpack slung on my shoulders, and turkey leg in hand. This is pretty much me in my full glory.

I could’ve let my diabetes get in the way of me enjoying the faire, especially because it’s been somewhat unpredictable lately, but I didn’t.

I ate what I wanted, drank some raspberry wine (much tastier than mead, IMHO), and socialized with friends.

I anticipated some people to notice or comment on my pod, which I actually wouldn’t have minded because maybe it would’ve been from another T1D or someone who is familiar with insulin pumps. But all day long, the only remark came from someone within my group, and we all had a chuckle over it…and that was it.

Which is perfectly fine by me, because even though my ye olde insulin pump and I weren’t trying to hide diabetes at the renaissance faire, it did give me a mental vacation from it for part of the day.

Huzzah to that, indeed.

I Don’t Care Why I Have Diabetes

I saw a post on Instagram recently that infuriated me (I hope you can get a sense of the vitriol I’m about to spew out).

An Instagram user (who shall remain nameless because it’s not cool to put people on blast) was exploring the reasons why they thought they developed diabetes in a series of Insta stories. Several questions were asked:

Was it because of an sedentary lifestyle?

Did it have something to do with being breastfed versus bottle-fed?

Does it have to do with diet?

Was it because of exposure to a certain set of germs?

Did it have something to do with a family history of diabetes?

And the list goes on…and on.

Why did it make me angry?

It’s because, well, personally, I don’t care WHY I have diabetes. I don’t think that exploring the reason(s) why I have it is a healthy way to spend my time.

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*Shrug emoji* I just think there are more important conversations to be had when it comes to life with diabetes.

All I know is that my pancreas doesn’t produce insulin – rather than trying to narrow down the reason why that is, I’d much rather put that energy into taking the best possible care of my diabetes.

Am I crazy? Doesn’t that make sense? It’s just that wondering about the why won’t do a damn thing to change the fact that I have diabetes.

I don’t want to make anyone feel badly if they’ve spent a lot of time thinking about the “why” – I’m sure that when I was younger, I asked myself that question a lot – but I’m merely just trying to change the direction and the focus of the conversation.

Let’s not talk about why – let’s talk about how.

How we can live incredible, full lives with diabetes.

How fortunate we are to have access to tools and technology that help us manage it.

How, despite diabetes sucking a lot of the time, it’s actually brought about a lot of positive change and influence in many peoples’ lives.

Now that’s the kind of productive discussions I’d like to see on social media…not the ones that are all doom, gloom, and pure speculation.

The Curious Case of Rotten Insulin

I spent half of the month of August high.

NOT THAT KIND OF HIGH.

I’m talking about blood sugar here, people.

And I’m not talking about scary-high levels. I’m just referring to levels that are higher than I’d like – between 160 and 200. And I’d stay stuck right in that range, even after bolusing quite aggressively.

I chalked it up to stress – life has been a little unkind to me this summer. I also blamed it on making less-than-healthy food choices, and questioned whether I needed to seriously start thinking about taking Metformin again (even though I had a shitty experience on it).

In other words, I took the brunt of responsibility for my highs. I was angry with myself for letting my diabetes get out of my control, and was just starting to accept responsibility when it hit me that it might be something other than my body rebelling against me at play here.

As it turns out, I should’ve suspected an outside factor from the beginning. That’s because my insulin had, somehow, gone bad.

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The vial in question…it caused me a boatload of stress.

I’m still very confused about how or why it happened. My insulin had an expiration date that was like, 2 years from now. The contents within the vial were totally clear – discoloration would’ve indicated an issue – and everything about this vial of insulin looked completely fine.

It was, and still is, an utter mystery to me as to how or why the insulin spoiled.

If nothing else, the case of the rotten insulin made me wonder…why hasn’t anyone developed strips that can check the effectiveness of insulin yet?

Can somebody please get on that (and give me partial credit for helping to spark this genius idea)?