A1c: Keep it a Secret or Share it with the World?

This post originally appeared on ASweetLife.org on May 12, 2015. I felt very strongly about keeping my A1c to myself four years ago. I’m still not too keen on sharing it with the world for the reasons I explain in this post, but I have been known to celebrate A1c victories on social media by posting particularly exciting results. Where do you stand on the spectrum? Keep it a secret, share it with others, or somewhere in between?

Over time, I’ve grown more comfortable with the concept of sharing as much of my diabetes story as possible. I’m open to the idea of answering questions that others may have for me, but there’s a key piece of information that I don’t think I will ever willingly share online: my hemoglobin A1c.

Some might make the assumption that this is because I feel ashamed or defeated by that number. I won’t lie, there are times in which I do get disheartened by my current A1c – particularly when I expected to hear a more favorable report from my endocrinologist.

Rather, I think the real embarrassment stems from the comparisons I make between my own A1c and the numbers reported by others. When I began blogging for ASweetLife just over two years ago, that marked the start of me exploring the world of T1D blogs. It was awesome to connect with others virtually by reading about their own personal experiences with diabetes. I admired the courage that many demonstrated by revealing some of their greatest challenges and obstacles they had overcome in their journeys. It seemed that improved A1c numbers were a common theme for nearly all of them.

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What do you do with your A1c information?

At that point, I started to compulsively compare my number to everyone else’s numbers. I seriously questioned myself and my ability to obtain a better A1c reading. I mentally berated myself for having a less-than-perfect number. The rational part of me knew that it was not wise to measure myself against others, but I just couldn’t seem to help it.

After a while, it dawned on me that the road to better A1cs had not been smooth for any of these individuals. It was marked by divots, twists, and turns along the way. As such, I wasn’t being fair to myself as I sought to see a better A1c. I know that it’s hard work and that I just need to focus on my own overall health and well-being (as opposed to that of other people) as I continue to strive for that 6.

Regardless, don’t expect to see me posting my A1c to my blog any time soon. I don’t really think I need a daily reminder out there for all to see of what my A1c was at a given moment in time. Instead, I think it’s important that I focus on what’s happening now and what I can do to help my current state of being. So for now, I’m content with keeping my A1c to myself.

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5 Things That I Don’t Mind About Having Diabetes

I thought about how I should title this blog post many, many times. It didn’t feel right to say “5 Things I Like About Having Diabetes” or “5 Things That Make Diabetes Okay”…because I will never like having diabetes, and I will never be okay with it.

But that being said, after living with it for 21 years, there are some “perks” to it that have made it somewhat more bearable. Okay, a LOT more bearable. Besides insulin, diabetes technology, and the like, there are five things that I came up with that make diabetes suck less for me.

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First, and most obviously…diabetes has brought wonderful friendships into my life. I’ve written about these friendships many times before and I’m sure I’ll continue to do so in the future, because they’re invaluable to me. I have some regrets about not realizing the importance of peer support when it comes to diabetes when I was younger, but maybe I figured it out in adulthood because some part of me knew that was when I would need it the most.

Second, diabetes has made me stronger. I won’t downplay the fact that it increases my anxiety and stress levels…but I also can’t deny that the trials and tribulations of life with type 1 diabetes has made me a tougher person.

Third, diabetes has forced me to be an obsessive planner. I do wish that I could live a bit more spontaneously sometimes, but honestly, I’m pretty proud of my ability to think ahead and plan well in advance of things. These planning skills have translated to other aspects of my life, too – I wasn’t on the party planning committee at work just for the heck of it!

Fourth, diabetes has taught me so much about nutrition. I’ve been reading nutrition labels before I could read actual books. I’ve met with nutritionists at various points in my life to learn how to eat a balanced, healthy diet that consists of the right amount of carbohydrates for me. I’ve educated myself on the power of the glycemic index and how it impacts blood sugar. Without diabetes, I’m not so certain that I’d have such a clear understanding of how different foods affect my entire body. I’m grateful to know so much about nutrition, because I think it makes me a healthier person, overall.

And fifth, diabetes has lead me to several interesting (and in some cases, compensated) research opportunities. Yes, you’ve read that correctly – my diabetes has allowed me to be a research study participant in a handful of studies and I’ve gotten paid for my involvement. The amounts have varied over the years – anything from a $5 Amazon gift card to a $200 stipend – but it’s not just getting paid that makes research participation worth it to me. It’s also knowing that I could be making a difference to the larger diabetes community. For instance, offering detailed feedback on a diabetes device or product might help make it better in the future, and if that means I spend an hour on the phone answering questions, then of course I’ll do it.

In times of diabetes hardship, it’s important for me to remember these five things. Diabetes was a shit card in life that I was dealt, but it’s not the worst thing that could happen to me. Reminding myself of these bright spots help to make life with diabetes a little bit better.

Blogger Burnout

Blogger burnout…it’s very similar to diabetes burnout, only not quite as frustrating because it doesn’t affect my physical and mental health as severely.

But it does best describe how I’m feeling right now. To be honest, I’m a passenger on the struggle bus at the moment as I try to balance many of life’s demands. I’m traveling frequently this month, attending numerous family and social events, scheduling all sorts of appointments, and trying to remember to breathe in between everything. A lot of this stuff is self-inflicted, I’ll admit, as I tend to thrive when I stay busy. But I won’t deny that it’s hard. When running this blog is tossed into the mix, I feel like I’m on the cusp of spontaneous combustion. Oh, and it doesn’t help that my blood sugars have been up and down as I run – no, sprint – from one thing to the next.Love always wins. (1)

I put a lot of pressure on myself to deliver the best content that I possibly can to my readers, who I care about very much, even if I don’t know all of them personally. I do my best to post brand-new content three times per week, which involves a lot more work than you might think. I have to come up with a topic, create an image to go with it, edit the piece, schedule its publication, and prepare multiple social media platforms to promote it. And that’s just for one single blog post.

By no means is this a “farewell” post or even an “I’m-taking-a-break-for-an-undisclosed-amount-of-time” post; rather, I just want to be honest with my audience that I’m struggling to keep up delivery of solid content. Please don’t be surprised if I continue to republish old content (but still originally written by me) in the next few weeks. Please continue to visit the blog as often as you can. And please, bear with me as I get through this little burnout phase – I promise to come out of it and be a stronger writer before long.

Type 1 Diabetes…the Uninvited Bachelorette Guest

T1D is an unwelcome presence in my life, but I’ve made peace with it. However, it doesn’t stop me from worrying about how its existence might affect others in a wide variety of situations.

Take a bachelorette party, for instance…I wasn’t sure how my diabetes would respond to a weekend spent in Saratoga Springs with my soon-to-be-married cousin and the gaggle of girls who would accompany her to a few different wineries, a comedy show, and other various shenanigans. I went into the situation hoping for the best, but expecting the worst.

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What does “expecting the worst” mean? Basically, it meant that I was preparing for the apocalypse. The bachelorette weekend was barely 48 hours total, but I was so paranoid about something going wrong with my diabetes that I packed twice the number of pods that I would need, extra insulin, spare syringes, Glucagon, and a low-blood-sugar-snack stash. Although I had a rough idea of what our itinerary looked like for the weekend, I still wasn’t 100% of what we would be eating and when, which as any T1D could tell you, is kind of a major concern when it comes to taking proper care of diabetes – and that concern is intensified when alcohol gets thrown into the mix, as it unquestionably would on our quest to find the best winery in Saratoga.

My worry only grew when things didn’t exactly start as I envisioned them. We hit the road around 4 o’clock in the afternoon that Friday, and picked up the delighted bride in Western Mass a short while after 6 o’clock. I expected that we would stop for food soon after the bride joined our caravan of cars bound for New York…only to be proven totally wrong when I discovered that most people were too excited to stop and eat. “No problem,” I said to myself. “I’m sure that by the time it’s 7:30 or so, people will be hungry.”

No such luck. As I watched my blood sugar slowly drop, my stomach roared with hunger as I thought about the last meal I ate, nearly seven hours ago. I knew I should speak up and ask the group to pull over, but I was scared. I didn’t want to be “that” person who was making such demands, especially since I was merely a passenger in the car and not driving.

But it was almost 8 o’clock and I knew that if I didn’t eat soon, it wouldn’t bode well for the rest of the night. My body tends to rebel if I go to sleep soon after eating a decent amount of food, and my blood sugars usually make me pay for the lateness of the meal. I feebly requested a stop to the girl who was driving, and discovered that she desperately needed to make a trip to the ladies’ room – at last, my chance for food! I called one of the girls in the other car to let them know that we would all be hitting up the next rest stop. “And Molly needs to eat!” The driver yelled into my phone before I could hang up. I felt myself blush, not wanting to be a pain in the ass…but little did I know, the girls wanted me to speak up.

When we all met at the rest stop, everyone asked with genuine concern how I was doing. As I assured them that I was much better now thanks to my Subway sandwich, I was gently scolded by the bride – my cousin – for not saying something sooner. Each girl agreed and I promised them that I would be better about letting them know about potential blood sugar issues for the rest of the weekend.

The funny thing is, though, that I really didn’t have any problems whatsoever. I was very surprised, due to the fact that we were eating late/inconsistent/not-very-healthy meals each day, drinking a few different kinds of alcohol, and spending less time than I anticipated moving out and about…normally, that’s pretty much a recipe for disaster. I can’t help but wonder if I avoided problems because I did everything the “smart” way – ate plenty of food to combat the effects of alcohol, took extra insulin as needed, and stayed hydrated all day, everyday. It certainly is a formula for success, and deserves credit for taming the unwanted bachelorette guest all weekend long.

Now if only I can replicate this for the upcoming wedding weekend…

The DOC: The 24/7 Support System I Never Knew that I Needed

I’ve lauded the DOC (Diabetes Online Community) time and time again for connecting me with individuals globally who are also affected by type one diabetes. And I don’t foresee an end to my desire to express gratitude for this amazing community, because over and over, members of it continue to blow me away with their words of encouragement and gestures of friendship.

My latest wave of gratefulness was spurred when I arrived home from work on Monday to a cheerful, Tiffany-blue envelope waiting patiently for me to open it. It was a delightful little package from my friend Sarah, who I “met” via Instagram over the summer. Besides diabetes, we share common interests in fitness, wellness, our pet dogs, and bright colors, among other things.

Sarah went out of her way to mail me a few goodies (shown in the picture), including a cute T1D key chain and an adorable cactus card with a message of support written inside. I was incredibly, pleasantly surprised by all of it. It wasn’t about the material items for me (though they are totally my style, and I can’t wait to make use of them). It was more so how she took the time to put it all together for me, cleverly incorporating some of the things that introduced us to one another in the first place, that really blew me away.

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Sweet trinkets from a sweet friend!

It got me thinking about the larger diabetes community I’ve met and harvested friendships with in the last several years. And as hard as it is for me to properly describe the level of richness, knowledge, and support that those friendships have given to me, it’s beyond easy for me to say that I am infinitely thankful for all of them, and I hope that in return, I am able to offer at least a fraction of the same to others.

With all that said, it’s even more mind-blowing to me that I resisted this community for such a long time. For the first 14 years or so that I lived with diabetes, I rejected the notion that I needed peer support to help me manage the emotional and physical aspects of diabetes. I turned down offers to go to diabetes camp. I didn’t interact with the only two other diabetics in my school’s district because I feared social isolation. In some situations, I even pretended that I didn’t have diabetes, because my yearning to be normal like everyone else overpowered my need to make my health a priority.

That’s why I don’t think it’s a coincidence that things started to turn around when I met other T1Ds my age. That marked the point where I could have open, honest conversations with others who were going through similar life events at the same time as me, without the judgments or criticisms I may have had to endure if I had those same conversations with family or doctors. While I know that I need to give myself and my personal growth some credit for improving how I manage my diabetes, I would be remiss if I did not also attribute some of that credit to the members of the DOC who have made meaningful contributions to my life and my outlook on it.

It’s funny that something special in the mail made me contemplate all of this, but Sarah’s thoughtful package to me is a tangible representation of how connections within the DOC have changed me for the better.

Thank you, Sarah, and another big thank you to those of you in the DOC that I have met, as well as those I have yet to meet.

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.

Diabetes, Diets, and Holidays are Naughty, Not Nice

Ahh, the holiday season…it’s been in full swing for just about a month now, and with that arrived a bevy of parties, potlucks, and poor dietary decisions. In a week, the new year will be here and it’ll bring a fresh start with it, but for now…I’m trying to find a way to make peace with all the indulgences I’ve enjoyed in the last several weeks.

Takeout Chinese food, pizza, homemade roasts, and baked goods galore are among the gamut of glutinous grub responsible for transforming me into a guilty gourmand over the course of the holidays. (Can I get a round of applause for that alliterative sentence?) I wish I could say that I had the willpower to resist the temptation of these foods that have been provided at the various holiday parties I’ve attended; alas, I couldn’t stop myself from noshing on them just as much as the other guests at these gatherings. A fair share of my fellow party attendees commiserated with me about diets flying out the window this time of year, but very few of them could understand that the fattening fare impacts more than just my waistline.

My blood sugars, of course, have been a victim of holiday feasting just as much as my size six jeans.

Feel the joy!
Instead of sugarplums, I’ve got visions of wacky blood sugars and too-tight pants dancing in my head. Fun!!!

Truthfully, they’re not as terrible as they’ve been during past holiday seasons. But that doesn’t mean I’m satisfied with them, or okay with the fact that they tend to rise and crash at equally rapid paces when I eat too much of the carb-y stuff and correct accordingly with insulin. The roller coaster ride combined with the feeling that I’m turning into the Pillsbury dough girl is what I’m fed up with, and I’m trying to figure out a way to stop punishing myself for it. After all, a new year IS right around the corner, and like many others in the world, I can and should use it as a reason to start eating more mindfully and healthfully, leaving the dietary mistakes of 2018 in the past.

It’s definitely cliche, but I’ve got to get back into the routine and replace all the cookies and fancy chocolates I’ve been consuming with leafy veggies and lean proteins. It won’t be easy, but I know that it’ll be worth the improved blood sugars and looser pants that are bound to follow.