SCENARIO: A blood sugar of 53 mg/dL caused me to wake up at 2 am, drink a juice box, and stay awake until 2.30 am waiting for my blood sugar to rise.
DESCRIBING TO MY FRIEND: “Yeah, sometimes diabetes is a thing at night. I had a low last night that woke me up around 2 am, but that’s why I keep juice on the bedside table. Do you want coffee? I totally could use some coffee.”
DESCRIBING TO MY HUSBAND: “Did you hear my alarm last night? Yeah, the juice box was from that. I need to make sure to grab the straw wrapper off the floor before the baby finds it. We need to buy more juice boxes, as I think that was the last one.”
DESCRIBING TO MY MOTHER: “I was 53 mg/dL, but I had a juice box right there on the bedside table, and my CGM alarm woke me up, and I wasn’t even tired this morning! So no worries, Ma.”
DESCRIBING TO MY INSURANCE COMPANY: “My continuous glucose monitor alarmed, waking me up at 2 am in time to treat a hypoglycemic event before encountering a seizure or similar. The glucagon kit in my bedside table was my last line of defense. This is why access to, and reimbursement for these tools is so important to me.”
DESCRIBING TO SOMEONE WHO SAYS DIABETES IS A DISEASE THAT PEOPLE SHOULD JUST BE ABLE TO CONTROL EASILY: “I hear you. But you have to understand that diabetes looks one way on paper and entirely another in real life. Not making insulin? Take insulin. But with that request comes the real risk and accompanying real fear of low blood sugars that could cause seizures, coma, or death. It’s a balance between taking too much insulin and not enough insulin, and a miscalculation is easy with so many shifting variables.” Insert awkward laugh. “We make it look too easy at times, but it’s not easy.”
DESCRIBING TO SOMEONE WHO I HOPE WILL DONATE TO SUPPORT A DIABETES ORG: “I think about diabetes every night before I fall asleep. Because I’m never sure I’ll wake up in the morning. When I’m alone at night with my kids, I wonder who will get them breakfast if I die while I’m sleeping. It sounds dramatic because it is a realistic worry. I never feel safe. I’m afraid that diabetes looks too easy or looks to manageable to folks on the outside, which might keep them from thinking it’s serious. But it’s deadly serious. We deserve funding for research and a cure. Until we’re cured, every day we manage a serious amount of risk.”
DESCRIBING TO MY CHILDREN: “Yes, I had a low blood sugar, but you know what? That’s why I wear my Dexcom. And why we keep juice on that table. Mommy is always as careful and as prepared as possible. Because what’s my job?” Long pause. “That’s right, to take good care of you.” Long hug. “I love you guys.”