More Than Diabetes

It’s the last day of D-Blog week! Its been amazing to meet some new writers and really enlightening to read perspectives from around the world.

Today’s topic is: More Than Diabetes. Lets wrap up the week by sharing a little more about ourselves, beyond the chronic illness we or our loved ones live with.

It will also be my shortest post of the week because I’ve got a flight to catch.

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Hobbies Pictured: Reading, writing, visiting new places with no plan. Also: emergency juice and gummies.

Hobbies not pictured: RuPaul’s Drag Race, dancing to Cher’s “Believe,” people-watching on the metro, discovering old man bars, wishing I could sing, going to concerts, annoying my neighbors by constantly blasting Van Morrison, laughing out loud whenever possible, and trying to write in Spanish.

I’ll be catching up and commenting on posts next week but right now I’m off to… Poland! If any of you have any must-see Warsaw sites or know where the must-eat pierogis are, feel free to let me know below.

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The Cost of Chronic Illness: Two Worlds and Two Kinds of Disbelief

In November I stayed up all night with two boys and a bottle of bourbon, following the US election results. There may have been popcorn involved too, but my memory is foggy. At six o’clock AM or some equally ungodly hour, the race was called. We had by then watched a clip of Donald Trump on WWE Smackdown upwards of thirty times—La Sexta TV played it all night alongside the electoral map and “Latinos for Trump” footage from New York. I had watched Pennsylvania turn red and slumped defeated into a sofa that wasn’t mine. I took the metro home then, even though what I really wanted were churros and to be dreaming. Line 5 was scattered with early morning commuters who had lived a night much different than the one I had. At my stop, a man was screaming “noooo” and vomiting into a trash bin. A Spanish woman stood at the news kiosk in front of my house and announced “we have a new president!” I climbed my stairs and went to sleep. When I woke up in the afternoon, I ate a bag of Doritos for breakfast. It may have been raining. In my memory it is. I listened to R.E.M’s “Everybody Hurts” on repeat. My two worlds, the one I’d left on the other side of the Atlantic and the one I live in now, both felt surreal.

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See, although I live in Spain now, I grew up in the United States. I am among the fortunate in that I never went without the medical care I needed growing up, but I remember my mom gathering letters from doctors and spending countless afternoons on hold as she petitioned our insurance company for more test strips. As an 18-year-old I wrote appeals to the same company for CGM coverage, a technology that was then in its early days.  In the most dramatic of all my visions, I saw my future divided: Life as a student with insurance coverage and then life after insurance coverage ended, at which point I’d probably have to sell my soul and my dreams to some company I didn’t really want to work for and spend hours on the phone begging insurance representatives for the basic supplies I needed to live. I came from a culture of fighting, so when I went to the doctor in Spain for the first time I was prepared for battle. Instead I encountered a system that found the idea of not taking care of me barbaric. I got the appointments and the supplies I needed immediately, at no extra cost, with no questions asked. I walked out of the health clinic and felt a strange mixture of disbelief and gratitude.

I’ve now used Spanish public healthcare for a year and I still experience that sense of disbelief every time I walk into an office and walk out with everything I need. No one calls me looking for money. No surprise bills show up in my mailbox. It is still difficult and counter-intuitive for me to not ask my doctor if my insulin and pump supplies are really included in my health plan. When I leave the office, I still get the urge to hug everyone I see on the street and to give every last cent I have to this system that has given me something I never felt in the United States: security.

Sure, things are different here. They’re rougher around the edges sometimes. When I go into the health clinic for blood work, there’s no system to know when its my turn. “Who’s the last in line?” I have to call out to the room, which is usually full by 8AM. Sometimes there are Spaniards waving around tubes of their own urine: “Can you take this?” they yell at the lab techs, “I’m gonna be late for work!” Sure, my primary care doctor could stand to work on his bedside manner and one might argue that the ticket systems and bare-bones waiting room decor at specialists’ offices are impersonal and unwelcoming. I’d argue that inaccessibility is more unwelcoming. I’d trade the ambiance fountains and comfortable recliners at my Philadelphia waiting room in a heartbeat if it meant that everyone who needed to access medical care, could.

Six months have passed since that election night and I still watch from afar in disbelief as politicians in my country vote to roll back legislation that protects people with pre-existing conditions. I feel anger and shame when I read stories about patients with diabetes who for economic reasons are unable to access the very non-optional medicines and education they need to live. Granted, I have a personal interest in the topic. My family, my friends, and maybe my future are in the United States. But every living, breathing human, healthy or otherwise, should have an interest in healthcare. Congressman Joe Kennedy’s response to the recent approval of the AHCA in the House of Representatives illuminates that:

“…every single one of us, one day, will be brought to our knees by a diagnosis we didn’t expect, a phone call we can’t imagine, and a loss we cannot endure.

So we take care of each other. Because, but for the grace of God there go I one day. And we hope that we will be shown that mercy too. It is the ultimate test of the character of this country confronting our chamber today — not the power we give the strong, but the strength in which we embrace the weak.”

Policy affects all of our lives and there is perhaps no population that understands that better than those who are in need. My experience is peculiar and privileged. I come from the richest nation in the world and yet I am still surprised and humbled to feel human in a healthcare system. I have America and a fortunate but altogether chance set of circumstances to thank for my education and the life I lead today, but I have Spain to thank for the relief I feel in knowing that my life and my misfortunes are not for profit. Spain’s system is far from flawless. It has its own unique challenges to face, but it is right in one thing: its humanity. I hope that, with every voice and every story shared, we can get closer to that in the United States.

Don’t Forget To Breathe

Don’t know what Diabetes Blog week is? Head over to Karen’s blog to read about it and check out this year’s topic list. I’ll be participating this year and I’m looking forward to reading and writing along with the rest of you! 


Today’s topic isDiabetes and The Unexpected.

Being prepared for the unexpected is not exactly my forte. Given the option, I’d never have a plan. I’d toss my emergency bags and my to-do lists and I’d live footloose and fancy free in a world where nothing ever went wrong. But things do go wrong in this world of ours, of course. Insulin goes bad, batteries die, reservoirs leak, and cannulas bend. You’re so excited about going to a salsa bar that you run down the stairs, fail to notice your pump tubing trailing behind you, get caught on the railing, and lose the battle (what? who did that happen to?) Your relaxing swim in the sea turns into a disaster when a grain of sand makes itself at home in your infusion site and you finally understand the purpose of those cute plastic cap covers that Medtronic includes in every set. A tiny demon called Norovirus takes up residence in your gut and you spend twenty-four hours praying to the porcelain god and wondering whether you’ll ever feel alive again. Ketones emerge and hang around and you end up abandoned in the back room of a Spanish ER, hooked up to an IV.

Sure, eighteen years of Type 1 Diabetes have by default taught me to be more responsible and to consider the possibility of an apocalypse or electrical failure every time I step onto the metro, but I don’t feel particularly qualified to give tips on planning for the unexpected since I am so often an improv actress in my own life with diabetes. I always carry syringes, juice boxes, and extra insulin with me. Many of my coat pockets are stuffed with individual sugar packets, or the remnants of them. Illness unfortunately tends to be difficult to avoid and can quickly get out of hand, so I set standards for when and where to seek help.

My best advice: always carry twice as many supplies as you think you’ll need (especially when traveling), always be open to the possibility that something ridiculous will happen, and then be ready to forgive yourself when your reactions are less than poised. Oh, and don’t be like me. Emergency supplies are best kept in one or two cute little bags, not strewn into separate corners of your backpack (I’m working on it, OK? It’s on my to-do list). Now take a deep breath and trust yourself.

The Many Mantras of Checkup Season

Excerpt from Wislawa Szymborska’s “Life While-You-Wait”

A quick update on my last post:

As it turns out, people eat a lot of things. Vegetables, for example, chopped and thrown onto a pan with olive oil and then into a bowl over a bed of very trendy quinoa. Feta cheese, for example, which was likely enjoyed by the Greek Gods and just so happens to be scrumptious in salad, couscous, or as a midnight snack with tomato, olive oil, and pepper.

Good news? I’ve gotten better at nourishing my body while still honoring my culinary laziness.

Bad news? I’m still the sort of person who would rather dig into a meal than photograph it, so there are no pictures to prove that I’ve consumed anything other than omelet lately. I have no recipes to share, either. That’s because these dishes are underwhelming and largely self-explanatory. Said recipes would read as follows: “cut some veggies up (however you please), toss them in a pan (with care and love), dance around (to something Irish), then eat.”

So. There you have it.

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Life rolls on. April arrived with all her beauty to the city of my dreams and so too did the pesky word procrastinator (see: me, see also: will I ever learn?). I finally requested a health card from the clinic in my new neighborhood today.

Length of time I avoided this task: six months.
Length of time it took me to complete: between eight and twelve minutes (walk to health center and brief pause to admire an alleyway included).

I have an appointment with a new doctor who will write me scripts, schedule blood work, and refer me to an endo and an eye doctor for those oft-avoided,  anxiety-inducing yearly checkups that make me repeat the same mantras year after year after year:

“Knowledge is power.”
“You got this.”
“You’ll be fine, girl.”
“If you’re not fine, you’ll still be fine.”

And then the pep-talks:

“You’ve conquered monsters with uglier names. If it turns out that you’re not fine (but I’m sure you’re fine, don’t worry, you’re totally fine), you’re more than qualified to confront whatever stupid senseless thing life may have to offer. Fear is fine. Laying on the floor is fine, too, but you probably won’t have to do that because YOU ARE FINE. YOU ARE TOTALLY FINE. It’s a DOCTOR’S VISIT. Ok, fine, it’s three doctor’s visits, but you know what? That’s great news. You love people-watching and the culture of the Spanish waiting room is the best thing that’s ever happened to you. This is gonna be fantastic.”

“You haven’t always done your best but that’s because you’re not a machine and that’s FINE! No, it’s more than fine. You know how angry those self check-out scanners at the grocery stores make you? Those are machines. They’re the worst. They’re unforgivable. You’re not the worst. You are forgivable.”

Diabetes: that sometimes quiet, sometimes clanky chronic illness that makes otherwise sane young women talk to themselves out loud.

Never quite fully prepared for anything and lately certain that I wouldn’t actually want to be, I let anxiety have its moment. I admire the beautiful building that houses my new health clinic and think about nine-year-old me at a dingy office complex in Pennsylvania, unaware that one day she’d be walking into this place, privileged enough to go to the doctor even when she felt just fine.