16 Days Without Dexcom or A Reminder of Self-Reliance

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God, there are so many things in life that you don’t learn until it’s too late.

2 weeks ago, on Friday 13th (of course), I went for a run in the park near my house.

You already know where this is going.

You already know I’m going to lose my CGM.

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Getting Insulin Abroad (In the Netherlands)

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2 weeks ago, I wrote about my experience getting insulin without health insurance in France in 2012. Little did I know while writing and sharing that story, that 2 weeks later, I would encounter a very similar situation in Amsterdam, where I’ve been living for the past 5 months.

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Getting Insulin Abroad (In France)

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This story was originally published as a guest post in 2 parts for the Type 1 Diabetes Blog I write bi-weekly for Diabetes Sisters. 

Before moving to Europe both times, I’ve gotten this question quite often: But how will you get your insulin over there?

While studying abroad in France when I was 21, I brought enough insulin for a 3-month stay. I was to be there for 4 months (which turned in to 9 months but that’s another story for another time), but I was supposed to get my visa by the second month. That visa would grant me health benefits akin to French citizens. However, if you’ve ever lived in France, you know how the French bureaucracy works. Read: slowly. Fast forward to month #3, visa “on it’s way- should arrive within the month,” and I’m cracking open the last of my Humalog supply. Obviously, I had to get more- but how, without insurance, without a visa? Without really speaking French? Without a doctor, or any clue where to begin?

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Diagnosis Pt. 2: In the hospital

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*This is a story in parts, so before you read this one, make sure to read Diagnosis Pt 1 so it all makes sense! 

I don’t remember packing my bags. I do remember logging on to AOL Instant Messenger, messaging Liz, and telling her I couldn’t hang out because I had to go to the hospital instead. She called me and I stepped outside, sat down on the front porch. Tracing lines on the brick steps with my fingers, voice shaking and cracking and weak, I said it out loud for the first time: I think I have diabetes. I almost cried- but didn’t- hearing my own voice sputter something so foreign, talking about myself, my body, in cold words I didn’t recognize.

You think you know how to take care of yourself. You think, I don’t have it all figured out, but what I do have figured out starts with something like this: I wake up and brush my teeth and eat cereal. That’s a good start. That is the first step to doing things, to getting through the day, to building a life. It starts inside- getting enough rest, eating, staying hydrated. Without that self-care, few things are possible.

That day, doctors told me I was sick- very sick- and the way I’d taken care of myself for my whole entire life would no longer work. It was no longer that simple. It was no longer, to put it bluntly, enough.

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Diagnosis Pt 1

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Whenever someone asks me about the day I was diagnosed with diabetes, I first think of a waffle.

An Eggo waffle with lots of maple syrup. It’s what I had for breakfast that morning- August 20, 2005. At the time, I didn’t know that this waffle would be the second to last thing I ever ate without hesitation. I didn’t know that this waffle, and all the other waffles and syrups and pizzas and juice and other carb-laden foods I consumed on a regular basis, were unraveling me. I didn’t know that this particular waffle and syrup would bring my blood sugar to a boiling 500+ reading at the doctor’s office.

That morning, I just knew I was hungry. So I ate something.

God, what a carefree concept.

Diagnostically, I didn’t have diabetes, and then I did- like walking through a door. But physically, for months, I felt trapped- a revolving door of strange symptoms and disintegrating health. Of dwindling weight, acidic ulcers, insatiable thirst, matte eyes.

It wasn’t until I returned from a 12-day summer camp that a doctor’s appointment was made, unavoidably. My weight loss could no longer be dismissed by maturing. I wasn’t thirsty all the time because of summertime heat and activity. This wasn’t just going to go away on it’s own, as my parents probably hoped for a while that it would. I was shrinking at a rapid rate- 15 pounds in several weeks. I came back from Camp Chanco just a fraction of my former self- all hipbones, spine and ribs. Nearly 14 years old, 5’4″, 82 pounds. That was the edge of the illness that was visible to everyone. The symptom they saw. The weight, the weight, the weight. I spent that time, the summer before my freshman year of high school, shielding rumors of an eating disorder.

The thirst, though, was the most painful. My tongue was sandpaper, despite guzzling gallons of water, lemonade (sugar-coated poison, unbeknownst to me), milk, more water. I steadily removed all dry foods from my diet to avoid mouthfuls of dust. Near the end, I barely ate anything but fruit. At Chick-fil-a with friends, I ordered large fruit cups and sweet tea (wince.) Dinner at my grandfather’s house, I nibbled 3 pears, skipped the entrée. More pears. Drank 7 glasses of water in 2 hours. Used the bathroom 4 times. Water slipped through my insides like it would slip through my fingers. Food, too. Nothing stuck. I woke up 4 or 5 times every night to pee, my tired, small frame trembling to the bathroom.

After one of 42 (roughly) bathroom trips during my birthday party, 4 days before diagnosis, I looked in the mirror and didn’t even recognize myself. I stopped and stared into someone else’s sunken eyes. Surely not mine. My eyes were bright energy. They were youthful, sharp, mossy green. The eyes in the mirror were deficient. Dull. Fragile. I turned around, gazed back, horrified, at the jagged mountain range of my spine, thinking how do people even look at me? How did this happen? What is this? With dewy eyes, I turned off the light, went back to my friends and family outside, and blew out 14 candles on my cookie cake.

The next day, the second part of my birthday party after the cookout in my backyard, was a trip to Virginia Beach with 5 friends. August 17, 2005. A smoldering golden beach day, yet the ocean water iced my bones. Even under high-noon summer sunshine, I shivered. I ached. While my friends shared salty giggles, my teeth chattered. I’m cold. I’m so cold. I’m freezing. My friends rolled their eyes. It was 95 degrees, I couldn’t be serious. I waded out of the water, hoping my friends would follow suit, but they didn’t. Cocooned in my beach towel, I sat in the hot sand and watched my friends frolic in the sea.The gap between The Healthy and I grew larger.

Right before the doctor’s appointment, a surge of panic flickered through me. I’m fine, Mom. I’m fine. I’m fine! I feel better! I think I’m really better! Let’s cancel the appointment. Ok, fine, I’ll go. But right after, can you drop me off at the movie theater to meet Liz?

I ate a snack bag of Nacho Cheese Doritos in the waiting room. The last thing I ever ate without a hint of calculation.

Have you been trying to lose weight? the nurse’s eyes matched her tone: sharp. I stepped down from the scale. No. My mom sat across from me as I swung my toothpick legs onto the exam table. I’ll just answer a few questions and be on my way, I thought. They’ll just listen to my heartbeat and realize I’m fine.

“We’re going to do a quick finger prick. It will pinch just a teeny bit, it will be over before you know it,” cooed the nurse. My body stiffened, my pulse danced. Nonononono not a finger prick! Not my blood! I’ve been duped! I didn’t sign up for this! How about I come back tomorrow? I’m not emotionally prepared. I’m not good with needles. I could never.

 A sharp plunge into the top of my index finger, a steely drop of O-negative (yes, I’m the universal type. Yes, I donate blood. Yes, I know it’s been almost 3 months since I last donated. No, I don’t need another reminder, Virginia Blood Services. Yes, I did get the 18 voicemails you left me yesterday) and a moment of silence. The furrow-browed nurse stared hard at the small digital screen. “This machine’s acting up. Hold on, I’ll get another one.” I cradled my pulsing fingertip, fuming at the idea of having to get two finger pricks. What a bad day.

The nurse repeated the procedure, shook her head at the results. “It’s not giving a proper blood sugar reading. 585? This number is way off.”

“No,” the doctor frowned, glancing at the glucose meter then back to me, “I don’t think it is.”

14 year old me’s first thought: I don’t think I’m going to make it to the movies today. 


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