Random middle of the night thoughts, to the tune of Flo Rida’s “Low”:
Shorty got those apple juice dreams,
Snacks are not a cureee,
The whole fridge was eaten by herrr.
Glucose hit the floor,
Next thing you know,
Dexcom flashed low, low, low, low, low, low, low, low…
I hope you read my editorial. You see, I have this boyfriend- let’s call him “D” for short. We have been together for over two decades now. You’d think he would have proposed already, but in his usual fashion D always takes me on an emotional rollercoaster. There are lots of highs and lots of lows. Some days are okay, and those are the days where I think D isn’t so bad. I mean, he loves me! I swear he does! People always look at us on the street together. We have all the fanciest technology and we sport it around town wherever we go. Some people stop me and say that they’re proud of us, of the relationship that we’ve built. It’s not easy, they say. But they don’t really know the reality of living with D.
D keeps me up at night a lot. He is loud and needy and incessantly wants to eat. In some ways it’s like tending to a child. And then I have to go to work the next day, and then go to graduate class after work, and society tells me that I should not complain. “D is not THAT bad. There are always worse boyfriends to have. Plus, my grandma dated a guy like D- haha D type 2!- and she just took a few pills to get over him.” They don’t see that D makes me cry sometimes. He can be a jerk, and he always acts up whenever something important is happening. On the good days, he makes me laugh, though. And I have found other people who also date D’s, and they have made me feel like we can do this. They are strong people. They are funny people. They know exactly what to say to make me feel better about D.
What can I do to improve my relationship with D? I am not ready to give up hope that we can work things out yet.
Sincerely,
Concerned Caregiver
According to the Journal of Agricultural and Food Chemistry, drinking coffee may help protect diabetic eyes from retinopathy. See the article here: http://www.battlediabetes.com/news/diet-and-nutrition/coffee-could-prevent-retinal-damange-in-people-with-diabetes.
And how do we take our coffee, everyone? Oh, that’s right- very light, no sugar. 😉
Now if only the rest of the day had followed suit…
According to the record in Microsoft Word, I edited what would later become the bones of this blog post almost exactly one year ago. It was a project for Faustman Lab at Massachusetts General Hospital for a Facebook forum titled “Share Your Story” to raise awareness for type 1 diabetes research at the Lab. Crazy grad school hecticness must have gotten in the way, or for once in my life I may have been a little shy- I’m not sure, really. But for some reason, I did not share my post a year ago.
Today I feel differently. Part of writing this blog is to be vulnerable- to take the chance that people might brush off my story, that some might laugh, that no one will care. Something tells me that there are other diabetics out there who “get it,” though, and that hopefully this will resonate with some of you.
It was a simple question, really. “Come on, Ally, you’re going to have a bigger piece of cake than that, right?!!”
I had just met Kate a few minutes earlier upon arriving at a birthday party for our mutual friend, Sean. Kate clearly meant well, but she had no idea what she was really asking. She was unaware that I had been eyeballing the frosting from across the room as if it was some sort of monster lurking in our presence while I calculated the sugar content and the havoc a few bites could wreak on my body.
Kate had no idea that my blood sugar had been double and triple the normal levels all week thanks to a head cold and the usual pump problems of bad insertion sites due to scar tissue build-up; no idea that it had been hard to focus at work but I had no remaining sick time coverage; no idea how much a “ketones hangover” can put the aftermath of any college fraternity party to shame; no idea how guilty I felt after snapping at a well-intentioned coworker who happened to cross my path in the midst of a diabetes-induced temper tantrum, which included flinging a few pens at the walls of my cubicle as they closed in on me; no idea that I would spend my Friday evening unlike almost all of my twenty-something year old peers: setting alarm clocks during the night to deal with the anticipation of a blood sugar crash; and no idea that the next day my pump would kink while traveling and I would have to find an abandoned shopping plaza for some privacy to change my pump site and shoot up insulin.
She had no idea that after all of that- about 15 hours in the life of a type 1 diabetic- many nights I go to bed thinking, You should have done more!; no idea that society, even close friends, seem to imply that it is your fault when your control lapses. Just avoid candy bars and life should be easy, right?
My good friend, Jessica, knew what that larger piece of cake might entail for me, and quickly intercepted any further questioning from Kate with a stern, “No, just no,” shaking her head.
Kate, a bit bewildered, thought better than to pursue the topic and shrugged it off.
Most days, I would pounce on the opportunity to discuss type 1 diabetes with those willing to listen. I probably would have displayed my blood glucose meter, explained how diabetes has affected my life and the lives of my loved ones, with careful emphasis on how much technology has changed things for the better during the course of my twenty-two years with this disease. Then I would have described how people like Dr. Faustman and her team at the Faustman Lab have been a reason to keep waging the good fight against diabetes, and how they top my long prayer list each morning and evening. I could go on to describe people of all backgrounds, those who traveled from Seattle or Mexico or right down the street in Newton, Massachusetts, who I have witnessed over the course of hundreds of endocrinology appointments, all coming to the Boston area for the common goal of improving the health of their family members at the best hospitals in the world.
Alas, tonight was supposed to be a relaxing occasion, a time to enjoy nice company and to forget the stressors of the week, whatever they had been. Yes, I could have gotten on my “diabetes soapbox,” but I opted not to for the sake of Sean’s birthday. Instead, I scooped up a forkful of my tiny sliver of cake, pressed a few buttons on my insulin pump, and took a bite, savoring the sweet chocolate flavor.
Everyone has his or her cross to bear. I do not blame Kate for asking an innocent question that happened to touch upon my cross during a rather difficult day. I truly hope that she has the freedom to live her life without ever having to contemplate why a large piece of cake might be a negative thing; it should not have to be! I am confident that one day my future children and grandchildren will enjoy that same freedom and can go back for seconds, without a care in the world, whenever birthday cake is served.
With sincere thanks to Faustman Lab for all that you do,
Ally
Howdy, diabetics and people who care a lot about diabetics!
Welcome to Very Light, No Sugar and thank you for your support. I am excited to connect with you and to share in our fight to create a world without diabetes. Please read our “About” section and “Disclaimers and Disclosures” for more information.
Now, let’s get down to business. Why blog about diabetes? If you had told me I would be starting a blog at the age of 26 five to ten years ago, I would have thought that was impossible; it was a task for someone else to do. A few years of maturity have changed my tune on this. Why not? Why can’t I simply be one dot who connects other diabetic dots? (And I do not mean the ones on your fingertips from thousands of blood tests)!
The bottom line is that curing diabetes is going to take a village of diabetics and their families and friends. If we all come together to raise awareness, to lift each other up on the days when we are exhausted from dealing with low blood sugars all night only to wake up to a rebound high blood glucose of 300, to fundraise, to communicate, to educate others- perhaps we will move forward so that we can one day live in a world where children do not cry about insulin injections, where we do not snap at coworkers when our blood sugar refuses to drop, when we do not have to imagine this burden for our future generations.
I pledge to be open, honest, and loyal in our shared battle of defeating this menacing disease while increasing awareness and support along the way. Diabetes is not always peaches and cream, and we should not have to pretend that it is. There will be days where we need a shoulder to cry on. There will also be days where for a moment we seem miraculously cured, our blood sugars hovering in that highly selective “100 Club,” and we will realize that “This- this is what it is like to wake up with properly-functioning islet cells every day!” I pray that one day we will enjoy that feeling every morning, from the perspective of someone who has been in the thick of battle and come out victorious. Until then, let’s share in the struggle together.
Thank you for letting me into your hearts (and pancreases), and likewise thank you for becoming a part of mine.
Please feel free to connect with me on Facebook at https://www.facebook.com/pages/Verylightnosugar;
Twitter at @verylightnosuga;
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Very Light, No Sugar 