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