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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Losing Patience with Customer Support

The other day, I nearly LOST IT on the phone with an Insulet representative.

I’m not proud of it, but I also was not sure why this particular phone call was taking so long.

I was calling in regards to a pod failure – something I’ve had to call and report many times before, so I’ve become very familiar with how the usual phone call goes:

Me: Hi, I’m calling to report a pod failure.

Insulet Representative: Okay, could I have your first and last name, date of birth, and shipping address?

*I provide the information.*

Insulet Rep.: Thank you for verifying your information. Could you please tell me about the pod failure incident?

*I explain what happened with the pod failure. The rep will ask me a series of follow-up questions, such as where was I wearing the pod? How long was I wearing it before the failure? Did I notice anything unusual about the pod activation? Did I need to seek medical assistance for the pod failure? Typically, this is the list of questions I’m asked, and then I finish my call with the rep.*

Insulet Rep.: We’ll be sending you a replacement pod. We will send it via standard shipping, meaning it will arrive in 7-10 business days. Is that okay with you?

Me: Yes, thank you.

*And then after exchanging pleasantries, the call is over. Standard running time on the phone is about 6-7 minutes. No big deal at all.*

So imagine my surprise, and growing ire, when a phone call that should’ve only lasted a few minutes stretched just beyond 20 minutes.

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I’m sure that all T1Ds can commiserate with me on this one…how many hours, and how much patience, have you lost due to customer support?

I still don’t really know why it lasted so long. The agent I spoke with was asking me WAYYYY to many follow-up questions regarding the pod failure, and what made it especially irritating was that I’d already explained every single detail surrounding the whole incident. It was like she was questioning my reporting abilities. Either that or she was really slow with taking notes, and maybe I was talking too fast for her? Who knows. All I knew was that I was calling in the middle of my workday, and I had to get this wrapped up ASAP so I could turn my full attention back to my work.

That said, it was difficult to stay patient, and I probably slipped up toward the end of the call. Actually, I totally slipped up, because my answers to her questions became very curt in my attempt to expedite the call…which didn’t work, by the way.

I felt a tinge of guilt for my brusqueness. After all, I used to be a customer service representative who spoke with her fair share of irate customers. I knew it would be appreciated if I at least said a sincere thank you before hanging up. So I did, and even though I wasn’t exactly proud of myself for losing my cool, I was glad that I could turn my attitude around in the end.

It’s kind of a metaphor for how I’m trying to handle my diabetes these days…allow myself to feel how I want to feel, but then go about handling whatever situation is in my way using a level head. Because that’s how to make things happen, IMHO.

Metformin Update #4: Here We Go Again…

Frequent readers of this blog are probably familiar with my journey with Metformin. If you aren’t, or want to brush up on my history with it, read here, herehere, oh, and here in order to get caught up.

Well, well, well…here I am again, taking yet another attempt at integrating Metformin into my daily diabetes routine.

I didn’t want to, certainly not after last time, when I thought it might be responsible for some unpleasant side effects I was experiencing.

But desperate times call for desperate measures…

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Yep, I’m giving the giant white horse pills another go.

Long story short (because I’ve explained in previous posts that I had a rough September), my diabetes was totally rebelling against me about a month and a half ago. Each morning, I’d wake up, check my blood sugar (which nine times out of ten was very good, between 100 and 130), and prepare one of three of my standard breakfasts. I’d bolus for them just as I’ve always bolused for them, only to discover that my blood sugar was climbing much higher than it should have in the hour or two after the meal. It was so confusing. I thought it was only a breakfast problem, but when it carried over to lunch, and then dinner…I realized I was facing a bigger issue.

I’m sure you’re thinking that higher insulin dosages were the simple fix to what was happening. But I didn’t want to take approximately 30% more insulin each day to handle something that I couldn’t even begin to rationalize. I didn’t think that should be my only alternative. There had to be something else I could do.

Enter Metformin.

After consulting with my endocrinologist, we agreed that I’d take one Metformin each morning with my breakfast. I explained to her that I was reluctant to go back on it, but she gently reassured me that the side effects I’d mentioned were pretty rare and perhaps there was another explanation as to why I’d experienced them. She also made me feel a lot better about skipping doses here and there – I wasn’t sure if that would reduce the effectiveness of the Metformin – by telling me it would be fine if I forgot a dose or actively chose to miss one.

And so began my third go-round with Metformin.

As of this writing, I’ve been on it for several weeks. And I’ve noticed a difference. My total daily insulin intake is back at a number that I’m much more comfortable with, and I’m not having to take correction boluses multiple times throughout the mornings and afternoons just because I ate my regular meals.

It isn’t exactly the solution that I wanted, but it’s the one that I needed as well as the one that works for me, for now, anyways.

Overcoming Fears and Feeling All the Feels at FFL Falls Church 2019

I wasn’t sure what I was doing here.

“Here” meaning the CWD Friends for Life conference that took place in Falls Church, Virginia, this past weekend. CWD/FFL are acronyms synonymous with some of the largest, best-known conferences for people with diabetes and their families. I went to my first in Orlando back in 2013, and it resulted in me craving more chances to spend time with large groups of T1Ds.

However, timing and money prevented me from going to as many conferences as I’d like in the last few years. I did go to one back in 2017, but it wasn’t what I’d hoped it would be…so going into FFL Falls Church 2019, I was simultaneously excited and nervous.

My fears and anxieties hit their peak within minutes of me arriving to the hotel that was hosting the conference.

All around me, I was witnessing mini reunions taking place. It seemed like everyone in attendance knew each other, and the introvert within me was totally freaking out – how could I possibly join these preformed friendships?

I left that first night feeling a little deflated. I’d only managed to speak to a couple of people who weren’t exhibiting vendors, and I’d spent entirely too much time looking busy on my cell phone when in reality I was just hoping someone might come up and talk to me. It was a little pathetic, but I knew I’d go back the next day having learned from my mistakes.

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Wearing the signature neon green bracelet (which denotes that I have T1D to other conference attendees – the other bracelet color is orange and that means you do not have T1D).

Day 2 rolled around and as I moved from session to session, I slowly started coming out my shell. I met and spoke with parents of T1D children of all ages. I heard a wide variety of diagnosis stories and experiences. I forced myself out of my comfort zone even more by attending a session that focused on diabetes and complications, which I normally can’t stand thinking about, but I actually found it to be one of the best sessions of the entire conference. It’s amazing how much people can open up to a room of what started out as strangers but quickly turned into friends and confidants.

By the third and final day of the conference, my diabetes soul was feeling rejuvenated. It’s pretty difficult to put into words, but being surrounded by so many people with T1D (and those who care for them) for a full weekend is unlike anything else. You’re around people who understand everything about diabetes. They know what a low blood sugar feels like. They know that 4 beeps emitting from an OmniPod is no big deal because it’s just a 4-hour expiration alert. They know how to carb count better than most doctors. They know what burnout is.

It’s just really magical.

In the end, I’m incredibly glad I went to the conference. I met people I might not have ever had the chance to meet. I learned quite a bit about some new diabetes technologies and medicines (more to come on those later). I had open and honest conversations about nearly every aspect of diabetes, which made me feel less alone. I left feeling happy, better informed, more connected, and most of all, proud of myself for overcoming my fears and attending the conference on my own.

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My happy face at the end of the conference.

 

Dealing with Diabetes When You’re the Maid of Honor

No, no, no. Not today diabetes. Dammit.

The morning of my cousin’s wedding, I woke up to a blood sugar of 237 after a night of fighting elevated levels. There was no rhyme or reason for the high blood sugar – I hadn’t eaten a single thing for 16 hours at that point, but I had changed my pod an hour or two before going to bed.

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When you’re the MOH and you also happen to have diabetes, you worry about a lot more than just your speech or your makeup.

WTF was wrong? Was the pod’s cannula bent? Was I high due to wedding day jitters? Would the highs persist all day?

These were the thoughts racing through my mind almost as soon as I woke up the morning of my cousin’s wedding.

I didn’t have time to worry about my MOH speech, or whether my hair would turn out the way I wanted to, or even to drink a celebratory mimosa while I got ready with the rest of the bridal party – I was too preoccupied by my elevated blood sugar.

All I could bother to think about was a potential solution before we all walked down the aisle.

Somewhere between applying my eyeshadow and having the 111th bobby pin secured in my hair (yes, it truly took 111 bobby pins to make my intricate braided up-do possible), I remembered “The Incident” from last year. I’d slept through a high blood sugar that, the following morning, refused to come down. As my frustration grew, so did the pain in my belly that lead me to the bathroom, where I came very close to passing out. One ambulance trip and ER visit later, I discovered that my pod’s cannula was bent, leaving me with no doubt that a pod malfunction was responsible for the whole ordeal.

With that memory vividly replaying in my mind, I made the executive decision to change my pod a couple hours before we were due at the wedding venue. And I can’t even begin to explain how happy I am that I listened to my intuition to do so. Upon removing it, I noticed blood at the site – not as bad of a sign as a bent cannula is, but a possible indicator of a problem. By the time we were in the venue’s bridal suite, my blood sugar was sitting pretty at 90 and I was finally able to focus on the beautiful, meaningful afternoon.

Sure, it was a stressful morning and far from an ideal situation, but I am extremely proud of myself for how I handled it. I didn’t panic the way I normally do. I didn’t shed any anxiety tears. I kept the issue pretty well-concealed from the bride, who shouldn’t have to worry about her MOH’s health on her special day. My calm approach paid off, and though it sucked to waste almost two days’ worth of insulin when I disposed the wonky pod, I knew I should pay closer attention to the fact that I did what needed to be done.

And even better was that my diabetes mostly cooperated with me the rest of the day. It didn’t stop me from delivering a fantastic speech with the matron of honor. It didn’t prevent me from enjoying some tasty wedding food, cake and all. It certainly didn’t keep me from tearing up the dance floor with my enthusiastic family. And it didn’t end my night early as I went out with my boyfriend, the newlyweds, and the matron of honor and her husband to a bar to shoot some pool and continue our celebrations.

Turns out that dealing with diabetes when you’re the maid of honor has a lot to do with keeping a cool head and living in the moment, two things that are so important to do in a variety of situations.

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.

Why You Should Get a Flu Shot (If You Haven't Gotten One Already) (1)
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.

 

Why You Should Get a Flu Shot (If You Haven’t Gotten One Already)

I’m not a medical professional by any stretch of the imagination. But I am a highly opinionated person who happens to have a chronic illness and who feels strongly about vaccinations such as the flu shot.

So with that in mind, let me say that I truly believe it’s of the utmost importance that you get your flu shot this fall.

Whether you have diabetes or someone you know and love has diabetes, you need to help protect yourself (and your loved one) by getting your flu shot. Why? Because it’s common knowledge that people with diabetes simply have weaker immune systems. I’ve made it a practice, along with many other people with diabetes, to keep up-to-date on this vaccination annually because I know how easy it is to get it – and actually, I was excited to get it done this year because my best friend since childhood administered it to me herself. I’ve never had so much fun getting a shot before!

Why You Should Get a Flu Shot (If You Haven't Gotten One Already)

Yes, I know, not everyone is as fortunate as me to have a best friend who will stick you in the arm to help protect you during this year’s flu season. But it doesn’t matter who gives it to you, just get it done.

It doesn’t matter if you’re afraid of needles (besides, they have nasal flu vaccines).

It doesn’t matter if you have a “great immune system” and “never get sick”.

It doesn’t matter if you don’t think you have time to go and get it done, because really, if you have time to read this post then you definitely can hit up your local pharmacy for a quickie shot.

I’ll get off my soapbox for now, because I’m sure you’ve stopped reading this post now in order to figure out when and where you can get yours! 😉