The Neverending Ride: Six Years With Type 1 Diabetes

I throw the covers off and stumble out of bed. I wipe the sleep from my eyes and look at my phone for the time. I check my CGM for my blood sugar level. I put on some pants and clip my insulin pump to the waist line.

You told me six years ago that we were going for a ride. I didn’t know then that the ride would never end. And for those six years, I’ve been searching for a way to get back home, but after all that I’ve experienced and all that I’ve seen, can I really go back?

Chocolate and White Cupcake

Today marks my six-year anniversary with Type 1 diabetes. Six years ago at this time I was waiting in the exam room of Xavier University’s health center for results on a severe skin rash. But the results of that skin rash, among other symptoms and an out-of-control blood sugar reading, pointed to Type 1 diabetes. I was admitted to the hospital a few hours later and so began my journey with this autoimmune disease.

My anniversary coincidentally follows #IWishPeopleKnewThatDiabetes Day (April 22, 2015). I felt a sense of solidarity with the diabetes online community as I read through the various hashtag tweets. And I feel like my small contribution to the day evinces how I truly feel about the disease and others’ perception of it.

Six Years With Diabetes

I often talk about the ups and downs of this disease on this blog in the hopes of sharing my story with a community of supporters and educating those who may not know the daily trials this disease causes. But more than that, it’s just nice to talk about it to an invisible audience that does not judge and simply listens. It’s nice to know that I’m not alone, but it’s also good to acknowledge that diabetes has not always been a part of me and that I lived almost half a lifetime before it knocked on my door.

But that is also my burden because unlike those diagnosed with Type 1 in childhood, I was diagnosed at 22. I still remember life without it. As each year passes, I admit it gets harder and harder to recall that life, but every now and then I stumble upon something from my past when diabetes was not a part of the picture.

Next week I will return to my hometown of Louisville, Kentucky for the Kentucky Derby for the first time in three years. I will be attending the Kentucky Oaks at Churchill Downs for the first time in my life. I will be there with family. And then on Saturday, I will attend my parents’ 21st annual Derby party.

Before diabetes came along, I have many fond memories of this day at my parents’ house. And since I was diagnosed the week before Derby in 2009, I also have a memory of this party with my new lifelong partner at my side. I’ve included an excerpt below from my book Sugarcoated on this turning point in my life, evidenced by this one day.

I Wish People Knew That Diabetes…

So what do I wish people knew about diabetes? I wish people knew that I didn’t ask for this. I wish people knew that I don’t know why my body shut down on me. I wish people knew that I’ve always taken good care of myself. I wish people knew that living with this disease is a daily struggle and a handicap. I wish people knew that I make it look easy, but it’s really hard sometimes.

I wish people knew that I don’t want to get my hopes up for a cure — I’d rather just live with the reality that I can manage this for the rest of my life. I wish people knew that I can do everything right, and sometimes things just go wrong, that sometimes this disease, like my body, has a mind of its own, and I cannot control it. I wish people knew that I’m not asking for sympathy, just understanding.

I wish people knew that diabetes isn’t my fault, and when I cut into that Derby pie on May 2, it’s because I can.

Excerpt from “The Eye of the Storm”

A week [after my diagnosis], I am driving to my hometown of Louisville (pronounced Loo-a-vul), to visit my family for the Kentucky Derby. My hands are shaking. I park in the church lot across from the house I grew up in. I grab my bags from the trunk, along with a bottle of Woodford Reserve.

I feel light-headed. I can hear the 90’s pop music streaming from the back deck. Dad installs outside speakers every year for the party. Papaw is standing in the frame of the front door, his hands on his hips.

I am shaking when I cross the front lawn and see the rest of my family waiting for me. Mom is behind Papaw. When I hug them and enter the house, I start to lose vision. I am overwhelmed by the people, I think, but then I remember that low blood sugar can cause blurred vision.

“I should go check my blood sugar,” I whisper to Mom. I walk down the black and white tile hallway to my old bedroom, now my youngest brother, Chris’ room. The closet mirror is broken. I cannot focus on the shattered remnant of myself. Mom follows me into the bedroom, watches as I pull the glucometer from my backpack and prick my middle finger with the lancet device. When I place the drop of blood on the test strip, my blood sugar reads 50.

“Wow, no wonder I feel so bad,” I say.

“What do you need?” Mom asks. I rummage through my backpack for my raspberry-flavored glucose tablets, a quick fix for low blood sugar. Dad comes into the room holding a pink drink.

“Here, drink this,” he says, handing it to me. Derby is his favorite day of the year. He’s normally a happy go-lucky guy, but his deep brown eyes always light up in a different way on this day.

“What is it?” I ask, taking a sip.

“A Lily, the official drink of the Kentucky Oaks.”

“You can’t give her that,” Mom says. “Sugar’s not good for her.”

I taste the vodka; Dad always makes strong drinks.

“My blood sugar’s low,” I say.

“Good. It has juice in it. Drink up.” He smiles.

Later that night, I am sitting in the bathroom with my head in my hands. My blood sugar reads 325. Surrounded by food all day, it was difficult to stick to my low carbohydrate regimen. Carbs, as I am learning, make my blood sugar rise so I must take insulin for every gram I eat.

Just two weeks ago, I could eat anything I wanted without thinking twice. I always tried to be healthy, but there were days like the Derby, where I let myself cheat. I still see tables of food: Papaw’s homemade chili, potato salad, chips and dip, broccoli casserole, hamburgers and hot dogs, macaroni and cheese and green bean casserole. Then there was the dessert table: chocolate-covered strawberries, pecan pie, apple pie, brownies and five different homemade “Derby” pies. There was a limitless supply of soda and alcohol.

It was nice to spend a day away from this new chronic condition, to reminisce about life without it.

But now that the day is over, I must confront the reality of its existence. Snoopy sniffs at the bathroom door and swings it open with her nose. She wags her tail and nuzzles up to my hands. I pet her, and Dad sees me while walking down the hallway. He comes into the bathroom, concern replacing his smile at my tears, and then he sees my glucometer.

“I don’t think I can do this,” I say. He kneels down in front of me, petting Snoopy, too.

“Of course you can,” he says. I notice the gray stubble on his chin. He used to have a mustache, but as soon as his facial hair started turning gray, he shaved it off. I think he looks better without it, more approachable, less intimidating.

“You know you’ll always have us,” he says. “We’ll get through it together.” I look at my glucometer again. The test strip is inserted, but the meter has turned itself off.


2 thoughts on “The Neverending Ride: Six Years With Type 1 Diabetes

  1. Pingback: Seven Years With T1D | Sugarcoated

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