Yep. This little bag is with me at all times. All. Times. My daughter picked it out years ago and I’ve been dragging it around the world with me since, housing essentials for my diabetes management.
Meter, test strips, lancets, lancing device, an insulin pen in case of pump failure, and a pen needle tip. (And chapstick, but that’s not essential for diabetes. Just for lips.) With these things, I can calibrate my CGM, keep track of my glucose results, and take a dose of insulin if needed.
Without these things, I’m not okay. Not healthy. And without these things for several days, I’m dead.
Humbling what sits in a pencil case bag.
Come back every day in November for a look into life with diabetes, from the perspectives of people living with it, clinicians caring for us, and the caregivers who support us.
At 4 am, when I woke up to hang out with my little apple jack to feed him, my blood sugar was 108 mg/dL. He ate and we both went back to bed. When I woke up at 6.30 am, my blood sugar was somehow 221 mg/dL.
What the hell happened?! Usually, breastfeeding makes my blood sugar drop, not rise. Was there cortisol on board due to not sleeping? Does my morning basal rate need to be tweaked again, now that I’m 10 weeks postpartum? Did the potato salad go bad and exact revenge on me? If two carbs left the station at 4 am, one going into my mouth and the other going into the baby, would they arrive on my meter at the same time? Bonus point if you show your work.
Diabetes is the ultimate math problem.
This diabetes month, I want to make an effort to “show my work” so that folks both in and outside of the diabetes circle have a better sense of what it’s like to live day-to-day with diabetes. Which brings me to this:
After posting this image as my Facebook profile picture, hoping people would ask questions about diabetes, my friend Chris Snider (<– always advocating, always inspiring) connected with me and after some quick back and forth, #amadiabetes came to be.
The hashtag stands for “ask me anything” about diabetes and in the spirit of spreading awareness and empathy, we’re encouraging our friends, family, and followers both with and without diabetes to ask whatever questions they have about the life with diabetes experience. The goal is to strengthen our community, educate others, and contribute to a culture of empathy. Check out #AMAdiabetes to see the variety of responses to questions, taking note that, as always, your diabetes may vary.
So feel free to ask away. Ask me. Ask Chris. Ask others. Ask yourself. Be all ask-a-rama all over the place and let’s learn from one another and educate together.
But I did not love sleep while Chris was traveling for work these last few weeks. Mostly because I did not sleep.
From the middle of September to last week, my husband was away for work. He came home three times for 24 hours apiece, which meant that we missed him terribly. And it also meant that Birdzone and I held down the fort for two months on our own, which, for the most part, went very well. Now that she’s five and a half years old, Birdy is excellent company and we had fun hanging out with friends and playing games. (For the record, she can kick my ass at Uno Attack. And Crazy Mates. If you haven’t played Crazy Mates, look into it. Buccaneer Bob is quite the fella.)
Doing the school routine and maintaining my work schedule was one thing, but getting enough sleep was the most difficult, and somewhat unachievable, goal. The compounded effects of not getting enough sleep took their toll over the last two months.
The first week that Chris was gone, I had a low blood sugar during dinner that was pretty intense. My best friend and another friend were over for dinner, with their kids, so there were people in the house. I wasn’t afraid that my low was going to leave my daughter unattended. But this low was long and drawn-out, making my mouth and cheeks numb and leaving my brain unable to formulate anything even close to a coherent thought. I remember sitting at the dining room table, my Dexcom receiver hollering, and I didn’t respond for a few seconds. I’d already had a juice box and some glucose tabs and my dinner, for fuck’s sake, but the food wasn’t hitting as fast or as hard as the hypo, so I was floating around on adrenaline and scraps of glucose.
It went on for about 45 minutes, and afterwards, the low hangover was epic.
I didn’t realize this low had scared me so much until a few days later, when I realized that sleep was not happening. I wasn’t able to fall asleep at night and I woke up several times throughout the night because I was paranoid about experiencing that hypo intensity again. I decided to share my Dexcom information, usually shared only with my husband and a trusted friend, with my best friend for the duration of my husband’s trip, because she was familiar with what the numbers mean, she knew how to respond in an emergency, and she lives five minutes away (and has a house key), so she could bust in if she needed to.
But even with the safety net of data-watchful eyes and technology that promised to buzz me awake if I fell out of range, shaking that hypo fear was difficult. It stuck with me for the duration of Chris’s trip, alleviated only when I was either away briefly for work myself or when my daughter was sleeping at my mom’s house. It wasn’t the actual low that scared me, but the idea that my child could find me low that kept me awake at night.
I wish this wasn’t the case. I would love to end this blog post with a clever line with advice on how to manage these situations and the best ways to avoid fear of hypoglycemia, but the reality is that I slept through the night again once Chris was home. And only then.
“It’s Diabetes Month … have you been advocating?” someone asked me in an email this morning. And I realized I’ve been avoiding it a little, because diabetes has spooked me a little in the last few weeks. I didn’t want to write about being nervous to go to sleep at night. That didn’t feel like the “right” kind of advocacy (though there isn’t a “right” kind).
But then I realized that it was the truth. And as much as I have accomplished despite diabetes, this disease influences my daily life in a way that far exceeds the seconds I spend checking my blood sugar or dosing my insulin. I had trouble getting any sleep because I was scared. Plain and simple.
The clever last line of this blog post? I’m fucking thrilled, for a dozen reasons, that my husband is home.
But no worries! All night long lows? I’ve got this. Juice box plus temporary basal rate should bring me up juuuuuust fine.
Then Dexcom alarms went off again at 4 am (this time, I was a little high from over-treating the low). Corrected that shit. No worries. (Kind of worried. I am tired. When do I sleep? Maybe tonight. Aw fuck it – let’s dance.)
“And this, too, please,” I said, sliding the opened and half-consumed bag of gummy candies across the counter, my hands shaking.
This low was bad. The symptoms were very visible, with unsteady hands and knees that were buckling out and sweat beading up on my forehead despite the 40 degree weather outside. I knew I was the color of a cotton ball, with the mental capacity of one as well.
My Dexcom had gone off about ten minutes earlier and I picked around in my purse for the jar of glucose tabs that I soon realized were tucked neatly into the cup holder of my car. Out in the parking lot. (Useful.)
Necessity forced my hand to grab the way overpriced bag of candies off the shelf and consume a handful. “Most expensive low ever,” I muttered, aware that coming up from this 45 mg/dL was going to cost me a pretty penny. I needed to get out of the store and reassemble my wits, but lows don’t excuse shoplifting, so I made my way to the cashier to check out.
“Are you okay?” the cashier asked, probably because I looked half-removed from the planet.
“These candies are open. Do you want a different bag? These have been half-eaten,” she said.
“No, it’s okay. I ate them.” I smiled in a way that I hoped looked reassuring but probably looked weirdly menacing. “Low blood sugar.”
She smirked. “And here you are, buying candy. Isn’t this part of the problem? You don’t look like you should have diabetes. Maybe you should stop eating candy.”
I would have rather been eating a banana, to be honest. Treating with fruit is my preferred way to upend a low. Or I would have rather had some measured glucose tabs so I knew how much I was consuming and could avoid the post-low rebound. Fuck, you know what? I’d rather not have been low at all, because being low in a public place is embarrassing and makes me feel vulnerable.
Let’s just round it out and say that I’d much prefer not to have diabetes in the first place.
“The candy is to bring my blood sugar up. It’s to keep me from passing out here at your counter.” It was hard to make the right words come out, but anger jumped ahead of hypoglycemia. My voice was sharp, like the plummet on my Dexcom graph. “What does someone who should have diabetes look like, anyway?”
She didn’t look at me. And I was glad she didn’t. I popped a piece of the candy into my mouth, my attempt at a PWD version of a mic drop. I don’t look like I should have diabetes? Maybe that’s the point. Maybeshe needs an education on what diabetes does look like, instead of viewing my disease as a punchline, one that society judges unabashedly.
I am not a doctor. I am not a certified diabetes educator. I have no medical degree. Nothing on this site should be taken as medical advice, and if you are taking it as medical advice, I suggest you contact your doctor immediately for issues other than diabetes.
This is my diabetes life - if you are interested in making changes to yours, you need to consult your doctor.
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