“I imagine being diagnosed as an adult would be harder because you remember life without it.”
“Yeah.” I nodded at the woman to my left, mother to an 11-year-old with Type 1 diabetes (T1D).
We were both first-timers to the JDRF TypeOneNational 2015 DC Research Summit yesterday. While many parents of children with diabetes attended the day-long event, I was among some of the adults who had been managing this disease for years.
I’m about to celebrate my sixth anniversary with this disease, one year closer to a decade. It’s hard to believe I’ve been managing the disease this long – it’s even harder to believe that I have many years to go. But like speaker Tom Brobson, national director of research investment opportunities at JDRF, reminded us, if we had all been diagnosed one hundred years ago, we wouldn’t have survived a month.
I’d like to believe on the starvation diet I would have lasted a little longer, but he was right about one thing – we’ve come a long way technology-wise. And for that I am thankful. William Tamborlane, chief of pediatric endocrinology at Yale University and deputy director of the Yale Center for Clinical Investigation, familiarized us with the “blue brick,” the first insulin pump device introduced in 1979. It would take another 20 years before the insulin pump would actually take off.
And Jessica Roth, senior director of health policy at JDRF, reminded us of the importance of advocacy. It’s not enough to have all these research advances such as ViaCyte, Smart Insulin, and the artificial pancreas without the ability for people living with this disease to have access to these treatments. It still pains me that Medicare refuses to cover the continuous glucose monitoring (CGM) system for those over 65. Continue reading
I’m a moody person, usually greatly affected by hormone levels. But even though I chart this for my own benefit, sometimes when I expect to be down, sad, and irritable, I’m upbeat and hopeful. I call these fortuitous moments because I’m not pulled in by my own confirmation bias. And I’m not intentionally looking for a silver lining, but it’s there like the alarm clock of my cat’s meow at 7am.
This week hasn’t been easy, either. After coming down off the high of traveling for the holidays and consuming way too many sweets, it seems my body is trying to punish me. From a cold to an infection to now a clogged tear gland on my left eye, I wanted to throw up my hands on Monday and go home.
And when I got lost for the tenth time around Dupont Circle (these DC traffic circles are the bane of my directional existence) trying to meet my friend for dinner in 20 degree temperatures, I gave up on this week. But then I got to see my one of my best high school friends who was in town for a series of events for law school. Continue reading
This week, I’m responding to a blog post on lying to your endocrinologist from Kerri Sparling at Six Until Me. Sadly, the truth is I almost always lie to my endocrinologist. Every few months, I cringe when the nurse brings in the downloaded blood sugar readings from my glucometer (even more so now that I have a CGM and cannot pretend to hide those unexplained highs or lows). But every few months, my doctor looks at my readings and says, “These look good.”
I’m surprised, relieved, and jumping up for joy on the inside. I succeeded! I DID NOT FAIL in the eyes of my doctor! But then, I feel immediately guilty because I know I’m not telling her the whole truth. I don’t tell her about the late-night peanut butter ice cream binges or the fact that I haven’t regularly exercised in the past five months (mostly due to my commute and the awful winter weather we had this year, which made me want to crawl under my bed sheets and hibernate until spring). Instead, I say, “Well, that’s good,” with a slight smile. Play it casual, like I’ve got it under control.
But as Sparling pointed out in her blog post, my doctor knows it’s not me that’s “noncompliant.” It’s my pancreas that doesn’t work like it should, and I’m just trying to deal. But I’m a perfectionist. I admit this much to my doctor. She’s concerned about the lows; she’s always concerned about the lows. But this last visit, she surprised me. She said research now says that regular low blood sugar levels can lead to worse long-term complications than highs. Really? Continue reading
I hadn’t been drinking that long before I was diagnosed with diabetes. Suffice it to say I was a good girl who usually followed the rules. But upon turning 21, my friends started winning late-night happy hours at downtown Cincinnati bars. I attended many of these happy hours, and with the first two drinks being free, it didn’t take long to make it to five.
Two weeks before I was diagnosed at 22, I was at a downtown bar with my boyfriend at the time, Reed. It was crowded for a Thursday night, mainly due to these happy hours. Reed and I had just returned from attending church with his family – it was the Thursday before Easter, and even though I no longer practiced Catholicism, I adored his family, calling them my own, and willingly subjugated myself to the torture of mass to spend time with them. I even wore purple (the color of lent, a season of repentance for Catholics).
I was nursing my second beer when Reed returned from the bar with two White Russians (he was a huge Big Lebowski fan) and two Bud Lights in hand.
“Thirsty?” I said, raising my eyebrows.
“Happy hour ends in 10 minutes, had to make the most of it,” he said, shrugging his shoulders. I wasn’t planning on getting drunk that night, but you know how the story goes …
Two weeks later, on April 24, I was admitted to the hospital for a severely high blood sugar (690). I was supposed to spend the evening with my boyfriend and his aunt and uncle. Instead, I was alone in a cold hospital bed with a dead cell phone and a disease. Within 24 hours, the doctor and nurses got my blood sugar down to 200. Although I was advised to stay another night, I pleaded with them to let me go, promising them that I was responsible and would take care of myself. Continue reading