DiaStories: August Spotlight On Maeve

Calling the Shots -

By Gretchen Boger-O’Bryan

We hope Maeve’s story this month has been a valuable inside look into living with T1D. It’s been enjoyable getting to know her, and hopefully enlightening to you all along the way. From diagnosis at a wellness visit with an immediate ICU stay, the sometimes hurtful responses from friends and emotional fallout that followed, to getting artsy and determined to bring home her own diabetic alert dog one inked coaster tile at a time, and realizing the steps needed to make fitness part of her life again when her normal pre-Covid outlets like school teams weren’t an option. To wrap-up her series today, we’re letting her take the reins, Q&A style:

What would you tell your newly-diagnosed self now?

I’d tell her that it will feel really hard at first. There’s so much happening and so much to learn with each day, meal and new experience. Like giving yourself your first shot -- you can do it, by the way, your mom and dad stick with it (see what I did there?) until one day, not long after you’re home from the hospital, you just know it’s time, and you take a deep breath and focus, and breathe, and … done. And it feels so good! (Well, not the shot itself, but knowing you did it for your own body!) Then there’s telling your friends about your new diagnosis and, trust me on this, it won’t always be easy: you will see who your real friends are. All this time you’ll be getting to know your body in a new way, feeling the highs and lows and realizing it’s you and your parents that need to actually take action to fix it. If I could save you from not knowing sooner that high and low blood sugar does do more than make you feel off physically. I’m not sure why we didn’t make the connection earlier, but know this: the highs and lows in your numbers are totally connected to your feelings, and those highs and lows. That added part can make dealing with the numbers and doing what you need to, a little more challenging because you'll be feeling cranky or frustrated and the natural response will sometimes be to get angry. It’s ok, because it’s all part of it, but just know that when your feelings

are bouncing all around and it’s hard to see through them, that taking conrol by addressing your blood sugars will bring relief and make everything feel easier to deal with. You got this, Maeve! This advice from the future actually comes to you the same week you were diagnosed in 2017. Tomorrow, September 1, is the day you finally got to leave the hospital. See the photo as you and mom were set free? We were feeling lots of things, but most of all ready to move forward and get out of that place!

What would you tell others who are struggling with diabetes?

You can get through this. I’ve struggled the last four years, sometimes more than others. During those times, it wasn’t a good place to be. Maybe this is what you’re feeling. Thing is, and this isn’t the best news, there’s not much else you can do but feel all the feelings because you’re allowed to, but then dig deep, take a step forward even if it feels small because each step in the right direction will snowball and you’ll begin to feel a strength that maybe you’ve just never had to feel before. At my

worst, I picked myself up -- sometimes slower than others -- and with my parents there by my side (even though I didn’t and still don’t always show appreciation for that), it’s possible. Four years into this and I’m still not perfect and who is, anyway? But each day is a chance to get better, to make one more good choice than the day before. Lean on your supports and remember all the good things about yourself -- self-love is what I think it comes down to for me. Despite all the help and support and things in place, at the end of each day, it’s me and my body and the future Maeve needs me to do the best I can with what I have now. Future Maeve has plans and dreams and a life to live, so I owe it to her.

Are there any tips, tricks, and/or recommendations that you would like to share with us when it comes to diabetes?

This will seem so simple, I know. Take your insulin before you eat. (I know, I said it was simple.) But I’m being really honest here in case anyone else struggles with this. It’s hard for me to do that consistently. I think maybe because I see the need to calculate and dose as annoying, when I have to do it before I can just sit with my family or friends and get on with the meal together, I still push back and often decide to do it after I eat. Problem is, after I eat, we’re all moving on to the next thing -- and then before you know it, it’s been an hour and I haven’t bolused, my number is going up, the crankiness is setting in and now I really don’t want to stop what I’m doing to figure out math that just got more complicated. Because I didn’t do it all from the start, it’s much harder to determine correction and coverage when my body is already responding to the meal -- it makes for more ups and downs on my Dexcom than I’d like, and then I’m chasing a high for the rest of the day. (And my parents are chasing me chasing the high, and it’s definitely not fun having them hover over me to fix something I already feel guilty about causing in the first place. Not trying to be a downer, but just get ahead of it, get it over with and then enjoy your meal with your family or friends and go on to the next activity without the guilt and reminders. I still struggle with this every day and I sometimes wonder if it’s because I let that start happening as a habit in the first place. Trust me: It’s not worth avoiding it. The few minutes it takes to handle it is so much less than the time and emotion spent chasing it. Some days it’s just one day at a time. The more days I string together where I’ve controlled it and it hasn’t controlled me, gives me that extra kick to keep it going. How many days do they say it takes doing something consistently until it’s a habit or second nature? I’m still working on it, but if you take anything from this -- and I’m especially talking to other teens just trying to keep up with the pressures of being a teen -- don’t fight this one thing. When I was first diagnosed at 12, my parents really did much more for me and it was a help. Now, though, we’re figuring out what T1D looks like when I’m 16 and just a couple years away from going to college or being out on my own. I know it’s hard for them to step back and let me do this my way, but they’re trying. I know they’re there as soon as I raise my hand for help, but the transition to being more independent is already hard, so just take the darn insulin before you eat and get on with the stuff you’d rather be doing. Pushing back against your own diagnosis isn’t proving anything helpful. (You hear that, Maeve?)

Favorite food? Favorite low blood sugar snack? Favorite diabetes accessory/gadget?

Ooh, this is sort of an embarrassing one to answer because I know it’s not the “right” thing to say. I love macaroni and cheese. And bread. And Burger King. And watermelon. (I know! I know!) Let’s just leave those answers right there -- not much I can say to make it seem better than it is. (Insert embarrassed emoji here. LOL) As for when I’m low, I’m not a big fan of tabs but would use them if I need to, of course. My parents buy the snack size bags of Skittles when it’s Halloween or Easter time, and we know the exact number to dose of those, plus they’re easy to carry in my backpack or my diabetes bag, or even for my parents to keep with them as well. We tried Smarties because they’re also so portable, and that can work for me, but I think their dryness reminds me of the tabs so we stopped with those unless we really need them. They keep well as an emergency go-to in the car because there’s no melting and they’re small to pop in the glove compartment. My favorite go-to is really simple -- cold apple juice. We use the small juice boxes with Sesame Street characters on it that my parents can order in bulk from Amazon. Kind of funny that they’re little-kid themed, but it works for me. They’re just the right size, quick and easy. (Don’t ask my parents about my cranky reaction when they’ve brought me a juice box during the night when my Dexcom alerts them, and the juice box isn’t straight from the fridge.) Cold, I tell you. Cold. And as for a gadget, right now it’s my CGM, the Dex. (By the way, Dex is in the running for the name of my diabetic alert dog when I can finally raise the full amount we need to make it happen. Wouldn’t that be fun? Another is Sugar. No explanation necessary!) I carry my kit around in a bag from Myabetic that looks like a clutch and has a spot for money, cards, ID, etc and that’s been nice because it doesn’t look like anything other than a cute purse. Inside it’s all about diabetes, of course, but since it’s got to be with me all the time, I’d rather it be something I can stand to look at all the time. It’s light pink, and my mom thinks she’s super clever when she refers to it as my “pinkreas.” I cringe and we laugh, and now it’s just a thing. I am looking to try one of the lancet systems that is so much more compact than my regular meter, I can finger poke when I need to and just slide the test strip into a reader I attach to my phone. Because, let’s be honest, my phone is always with me -- just like the darn pinkreas.

ALL DONATIONS NOW THROUGH SEPTEMBER 10TH WILL GO DIRECTLY TO GLUCAGIRL'S DIABETIC ALERT DOG FUND - DONATE AT: https://www.diastrongfoundation.com/donate

DiaStories: August Spotlight On Maeve

Damage Control -

By Gretchen Boger-O’Bryan

It was about a year into diagnosis, Maeve says, that she first heard the term “diabetic alert dog” and, she admits, then it was all she could think of. 

The avid dog-lover says her pup Spud (also 16, like her) is the first she greets each morning and finds upon arriving home each day. Maeve was thrilled to learn that service dogs trained using their person’s scent when blood sugar is high or low can then sense sudden level changes and alert their human to take action -- often well before the Dexcom alarms based off blood and interstitial fluid readings.

In addition to help with what Maeve calls, “my biggest chore that’s done over and over but is never,

ever finished,” the idea of having a dog always by her side brings a kind of comfort she hadn’t realized she needed. “Some days it’s really hard, and the weight of the cloud sort of follows you, even during good times. It’s always there. Having an alert dog would help keep me safe while also reminding me I’m never actually alone. That would definitely be some sun breaking through the cloud,” she explains.

After some research, Maeve learned costs for a diabetic alert dog reach well into the mid-$20,000s and that, her parents explained, was a game-changer. With regular insulin purchases and related medical bills, that kind of investment isn’t in the cards. They reminded her that insulin is required to save her life every day and while an alert dog would be helpful, without insulin, there’d be no Maeve to support.

Indeed, not even Uncle Pennybags’ pastel-papered banker’s till -- the Monopoly man in Maeve’s favorite game -- could help on this one. After her parents shut down Maeve’s Go Fund Me idea, they

counteroffered: if she tries to earn it, they’ll help her do it.

That’s where GlucaGirl comes in, the alter-ego she and her parents landed on because of its superhero feel and reference to glucose, a theme now such a huge part of life. After tossing ideas around, Maeve landed on an art project she wanted to try. She and her mom bought supplies, tried several techniques and, when the pieces were dry and ready for the next step in creation process, they loved what they’d

created. And that’s how GlucaGirl, a T1D on a quest for a service dog one inked tile at a time, was launched. 

Maeve creates brightly colored designs with alcohol ink on ceramic tiles and, once dry, spray-seals each to set the ink. Then, with her parents’ help, the trio pours a multi-part resin on top and uses a heat torch to pop bubbles before the tiles must cure for several days. The resulting glass-like finish resists moisture and heat. Says Maeve, “Those two qualities mean these are perfect as drink coasters as well as art. I attach cork to the bottom of each to protect furniture, stamp them with my logo, and paint the edges to finish it off.”

Maeve began inking on her own, stockpiling designs until the family could set up outside for a huge spray session. The next stage of resin takes a lot of time, says Maeve, “there’s just so much attention to each little detail that it gets intense.” Then she laughs, “I take a lot of breaks.” 

All proceeds from the $15 tiles go right into her service dog account. Thanks to a local Facebook group that spurred a flurry of orders, two community supporters and a porch pop-up at home just before Covid-19, Maeve is halfway to the $25,000 goal. The pandemic slowed things a bit, as supply costs increased and some, like rubbing alcohol, became impossible to locate. Still, while in quarantine, she’s held some virtual pop-ups on her Facebook page (@GlucaGirl) and basic website, glucagirl.com.

While inking after virtual school was one activity during quarantine, the entire experience meant no

longer playing on her high school’s soccer team or enjoying other sports – gym class, she notes, is her

favorite subject! – her level of physical activity became nill. She missed running up and down the soccer field -- a sport she’d played since first grade that included recreation teams, travel team and a club team with year-round play -- and taking part in other activities that kept her on the move.

Now, though, Maeve’s coming up for air and finding ways to take control there, too, despite

circumstances -- a worldwide pandemic will certainly do – that make it difficult. After her mom won an eight-week personal-training session mid-summer, Maeve now joins her in the local studio three days a week, as the pair learns the ins and outs of kettle bells, dumbbells, lunges, planks, wall-slides, wall-sits, plank jacks, and the most recent discovery, the Bosu ball squat. Local to her New Jersey home, its clever name, Out Run Your Fork (ORYF), is just as fun on the inside, too. Says Maeve, “It’s such a friendly place to go, everyone is supportive, full of energy and always teaching me something new. It’s hard not to smile there.” Then she jokes, “And it’s even easier to smile after I’ve finished the workout!” 

Maeve and ORYF co-owner Melissa are working together on a nutrition plan that keeps Maeve’s T1D

needs in check, her finicky teen-palate content and jumpstarts her metabolism, all while building

strength and endurance. “I know it’s going to be a lot of work, but Melissa promises me I will feel so

much better in general and, of course, the help with my blood sugars will be huge," says Maeve.

With this new focus on movement as the world has slowed, Maeve and her family have even dragged out the long-forgotten basement treadmill, tacked some posters with stretches, weight-training exercises, yoga, and body-weight exercises to the wall of a spare room turned workout space. Located just down the hall from their bedrooms, the room beckons, reminding Maeve and her family to keep it moving and keep taking control, despite all the ways life these days can feel so out of our control. 

Stay tuned for next week’s final installment of Maeve’s DiaStory, “Calling the Shots.” Gretchen Boger-O’Bryan is a writer, editor, nonprofit toiler by day and, most important, parent to a T1D, no matter the hour.

ALL DONATIONS NOW THROUGH SEPTEMBER 10TH WILL GO DIRECTLY TO GLUCAGIRL'S DIABETIC ALERT DOG FUND - DONATE AT: https://www.diastrongfoundation.com/donate

DiaStories: August Spotlight On Maeve

The Lowdown -

By Gretchen Boger-O’Bryan

Awkward moments of silence. Birthday cupcakes for all the other guests. The friend who convinced others to keep away “or catch diabetes.” Parents heavily involved in talking about meals, snacks and choices.

Indeed, in the nearly four years since diagnosis, the gamut of Maeve’s experiences as a Type 1 diabetic has been wide and the impact deep. Diagnosed at the cusp of teendom, when such leveling up leads to greater independence, long-awaited freedoms and a plethora of experiences sans parents, Maeve’s transition into teen life looked a bit different.

She explains, “I remember finally being old enough to walk downtown with friends and go to the local pizza place. The first time, as we sat around the table waiting for our orders to arrive, I felt like I’d really started to grow up, being there on my own with just my friends. We were laughing, talking and excited to be making plans for the rest of the afternoon -- but then my cell started going off, vibrating in my lap. I tried to ignore it and hoped no one else noticed.”

Turns out Maeve had a good idea who was texting and why. She continues, “When I snuck a peek, sure enough, it was my mom and dad on our family thread. They were waiting for me to let them know what I’d ordered so they could help me do the math to figure out how much insulin I needed. I know they were trying to help, and it was the plan we came up with before I left. It’s just that, once I was there, I wanted to be in the moment like everyone else. No one else had to predict how many slices they would eat, or think about how thin crust would have cut down some carbs; I didn’t want thin crust, no other kids order pizza that way.”

Maeve admits she was so lost in her thoughts -- from feeling frustrated at her parents chiming in to confirm insulin amounts and whether she’d taken it, to realizing just how much her life had changed -- that she hadn’t realized the pizza arrived until her friends’ chatter had died down because everyone was digging in. “I still had to do a blood sugar reading, calculate a correction and bolus for the pizza -- and I was sure they’d be done and waiting for me.”

It was then that Maeve made a decision: She put the phone down, picked up a slice of pizza and decided to deal with it later. She shares, “I wish I could say that was the only time I pushed the thought of my diabetes away, or ignored what I needed to do for my body. It’s not and still isn’t. I feel like I can speak for many T1Ds by saying, ‘Please don’t stare at us, whether it’s our Dexcom,  pump, or even injecting ourselves. We don’t need the unwanted attention -- we’re just trying to keep ourselves alive.”

A year after diagnosis, Maeve, then-13, attended Camp Nejeda in her home state of New Jersey just for kids with Type 1 diabetes. “I was nervous. I felt like the new kid and didn’t know anybody or how they did things. After a while, I not only got used to it but made great friends I still have. Actually, the first time I wore my Dexcom on the back of my arm where others could see it was at T1D camp! Everyone there was just living life and wearing theirs and not caring who saw it -- so I didn’t feel ashamed. I wasn’t alone!”

Maeve adds that now she’ll wear it in more noticeable places, even if she’s at the beach or wearing

shorts. In fact, she shares, “One day I saw a dad and his little boy walking on the boardwalk. As I passed them, I just suddenly said hello and pointed out I had a Dexcom, too. I was surprised I did it, but it felt so good to see someone else like me, almost like it was something special -- we had it in common. My mom always calls it, seeing another T1D “in the wild.”

As for the hardest moments now, Maeve says it’s probably when she’s sleeping and her blood sugar

goes low. “The body isn’t meant to be eating or drinking at 3 am. The juice stays on my teeth or piece of bread to hold my level steady for the rest of the night is just sitting in my stomach. When you

already don’t feel well, and you're half-asleep, the idea of those things doesn’t sound good at all. But I

know it’s what will eventually make me feel better. Then, hopefully, I get back to sleep before it’s time to get up for school!”

Stay tuned for next week’s installment of Maeve’s DiaStory, “Damage Control.” Gretchen Boger-O’Bryan is a writer, editor, nonprofit toiler by day and, most important, parent to a T1D, no matter the hour.