Saturday, June 24, 2017

Where?

Where do you carry the weight?

When a part of you stops working, the need for it to work doesn't go away. I still need insulin, although I don't carry it in my pancreas any more. I need it now more than ever, in a way, considering the fact that I'd never considered its existence until it began magically disappearing, spirited away by my angry angry immune system.


So now I carry my pancreas in my purse. I carry it in pockets stuffed with glucose tabs. I carry it on my body, physically, strapped to me and punctured inside of me. I carry it in my mind, a constant thread woven through my inner monologue. I carry it in my eyes, the nights I get no sleep from all the beeping and buzzing. I carry it in my carry-on bags and in my checked luggage, just for good measure.

I carry it like a shield, revealing it to someone new but also defensively daring them to ask if I need help. I carry it like a balloon, something I let go of when I can but am always fearful I won't be able to get back under control.

The question is funny,"where do you carry the weight?" It can mean two things, like, physically, where are you carrying that weight on you? And also physically, like where are you when you are carrying that weight?

I guess my answer to both would be, everywhere. 

Saturday, June 17, 2017

To My Inner Diabetes Critic....

Hey there, little voice in my head.

Yes, the one who whispers comments like "Another wild overbolus for a slightly carby item? Why not try doing some actual calculations once in a while?" or "Are you really going to go for a walk with just some glucose tabs and not your glucagon?" or "Why don't you make more diabetic friends?" or "Hmmmmm pizza? I wonder what that will do to your A1C."

You're there, all the time, constantly, although the joys of life do drown you out quite often. But you're especially there when I fail. You're there when I spend 12 hours riding the high carb-high BG-overbolus-low BG-overcorrect-high BG roller coaster. You're there when I turn all temp basals off and still wake up several times in the night to pound glucose tabs and Larabars during a backpacking trip. You're there when I struggle to fit all of my items into a weekender bag. You're there when I just....can't....get.....under....200 no matter how hard I try. You're there when I don't finish my dinner that I already bolused for, when I don't exercise at the time I had planned, you're there for so many things.

But then I read this quote, from Teddy Roosevelt (via BrenĂ© Brown, of course) 

"It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly;...who at best knows in the end the triumph of high achievement, and who at worst, if he fails, at least fails while daring greatly." 

I know a thing or two about dust, sweat, and blood. And while there are always things I can be doing better, I'm down here doing the deeds. I'm backpacking, I'm teaching, I'm swimming, I'm writing, I'm eating, I'm living. I'm doing the damn thing. And while every day is not perfect. Every other day is not perfect. In fact, every day is not perfect. And while all of that is true, every day is a triumph in a way that it wasn't before I had this added responsibility. Like, maybe I ticked nothing off my to-do list today but hey--I kept myself alive for one more day, and that's gotta be worth something, eh Teddy?

Saturday, June 10, 2017

We'll Do It Live!

Please start this entry by googling "Fox news meltdown f it we'll do it live" because it's honestly wonderful. 

And now that you're back, I'll tell you a little story. It's a story about a malfunctioning pancreas, but not the pancreas that you already know about. 

One night a few weeks ago, my current pancreas died. My Omnipod, the one who has been doing the heavy lifting for the past 2.75 years, quietly flickered and buzzed its last buzz. At 6 pm on a Wednesday. 

I had only a moment to feel helpless, before I needed to spring into action. All the things I should have but don't at home--like unexpired long-acting insulin, more than 5 syringes, ANY insulin pens....yeah I had to go about acquiring those like ASAP. My dinner plans? A slice of pizza? Yes that also had to be changed/downgraded to a salad and hardboiled egg. With fruit though because you gotta keep L-I-V-I-N ya know? 

I ran to the pharmacy, I called Omnipod, I called my endo, made all the arrangements I could given that it was after hours and hoped for the best. 

And then it was just me. Me and my ratios and basal rates to calculate, since everything was stored in my pump and all of my notes and printouts from my endo were....well....somewhere in my "important things" drawer. Me and a syringe which I'd previously NEVER EVEN USED BEFORE because I had a pump within 2 months of diagnosis and before that I'd always used pens. 

For the first time in almost 3 years, I was "managing" my diabetes by hand. Going analog. And it was ridiculously, supremely difficult. My basal rates? Obviously not cutting it since the pump is more effective delivery, so I needed wayyyy more than I thought. Rising BG rates? Impossible to know if it's from an underbolus or not enough basal, and no way to do a temp basal increase to try and figure things out. And how long is the long in long-acting anyway?

And did I mention that it hurt? Every bite of food was a shot. Every mistake was a shot. Not just a quick "bloop" on a discreet device. No it was a full on, pull out a syringe, draw up the liquid, find a spot, pinch, shoot, ouch, rinse, repeat type thing. Diabetes is normally exhausting. But this? This was draining. This was a lot to live with. This was intrusive. This was missing work and cancelling a date and taking a lot of long walks and frantic mental calculation and rude stares from people again. 

And you know what else was hard? Saying goodbye to my PDM. I haven't been able to mail it back yet. I'm weirdly attached I guess. It's been with me since almost my very moment of diagnosis, something I've held onto. It's gone absolutely everywhere with me. I've spent nights curled around it, covered in glucose tab dust and tears of exhaustion. It's seen mountaintops and deserts and oceans and multiple continents. It's seen every meal (ok well most meals). It's the first thing I grab in every fire drill. It's seen me grow a lot and it's not something that's easy for me to let go of I guess. 

Saturday, June 3, 2017

The Weight of Things

Sometimes diabetes can feel very, very heavy.

Sometimes it feels light.

Today I went for a run, a run that I was unsure of, due to IOB and general lowness the past couple of days. But I pulled a temp basal decrease, I drank some coconut water (chocolate only duh!) and I hoped for the best because sometimes that really does happen.

Not this time, though. Halfway through I felt myself dropping, dropping. 54 with an arrow straight down before I could even get out my Dexcom. And I knew I was in for a bad one, after running so hard, and I still had to walk home. I took out my tube of glucose tabs and I held it in my hand and I ate 7 of them and powerwalked as the fog gusted around me.

And I thought to myself that 48g of dextrose was all I had between me and disaster. Rattling gently in a tube as I walked briskly home, looking like any other runner on the street during a cooldown. Except my brain was fog, my cheeks were numb, my eyes were glassy, and it was only muscle memory that guided me back along what felt like the longest mile of my life.

Your life is in your hands, yeah true, but my life today was literally in my hands.

And it felt so, so light. 

Saturday, May 27, 2017

Community

Beep beep beepbeep! Beep beep beepbeep!

The distinctive noise of an Omnipod expiration alarm rings out.

I reach for my bag, weary, ready, alert, alarmed. She reaches for her bag too.

"I thought that was me!" we both say.

We both smile.

A weight lifts off my shoulders. Something that was drudgery is, just for a moment, commuted into something whimsical.

I guess that's the power of community?

Saturday, February 4, 2017

Why I March

Why have I marched, and yelled, and donated money, and held signs big and small, so many times the past weeks?

It's not because I have a huge history of political activism. I don't, actually. I used to be more involved, in college, a familiar story, but I've fallen out of practice in the ensuing years. There are protests and movements I wish I had been part of, but really all I did was look on sympathetically as others took up the mantle.

It's not because I have a Muslim best friend, or because someone is my mother or my sister. It's not even because I'm a woman, a government employee, and someone with a chronic illness who depends on having health insurance.

It's not because my students are afraid of their president, afraid for their families, afraid because, as they said, "I feel like if I met him he would tell me to get out."

It is all of that, but it's not that.

It has to do with something that diabetes has taught me, actually. Which is that, when it comes down to it, there's just you and your body. Your brain. Your heart. Your own two feet. Your pancreas (or lack thereof).

And I can use my body to send a message. To people trapped in airports. To my contemporaries who would like to be speaking out but are rightfully afraid to draw attention to themselves. To women trapped in unwanted pregnancies. To people who walked so far and "broke the ocean in half to be here. Only to meet nothing that wants you."*

And with my own head, and heart, and body, I can tell these people. You are not alone. I am here. I have feet, I have a voice, and I will protect you.

*poem by the lovely and always topical Nayyirah Waheed


Saturday, January 28, 2017

That One Time my Diabetes Was Dangerous for Everyone Else

Why have I been gone from the interwebs world for the past 5 months, my pack of adoring fans might want to know? I'm not sure, actually.

But that's not what this post is about.

The time for self-reflection is coming, I'm sure. But for now, I'm writing about a topic less covered in the diabetes blogger universe. I'm writing about the dangers my diabetes can pose to those around me. And no, not children who are younger and dependent on me. No, I'm talking about FULL GROWN adults here.

A few weeks ago, I was home visiting my family for the holidays. I came home from seeing a movie with a friend (La La Land....discuss???) and was greeted by my family at the door with an accusation. "You're beeping!" they informed me. Confused, I did the standard mental checklist, squeezing each item in turn. CGM sensor? On my body. CGM receiver? In my pocket. Omnipod? On my body. PDM? In my purse. Phone? Also in my purse.

Slowly, warily, pretty sure I was incorrect, I informed everyone that...well, everything I owned that could possibly be beeping was well, with me, while I was gone. And that I hadn't heard any beeping while I was away. As I was talking, I heard the slow, single beep they were referencing. Coming from upstairs. Nowhere near me. Sounding totally unfamiliar.

Well, actually....not totally unfamiliar. I'd heard that beep before. That single, piercing note came from only a few devices....smoke alarms and CARBON MONOXIDE DETECTORS. Luckily for my family, it was only a warning beep to let them know that the detector had been unplugged. Otherwise my family would have GASSED THEMSELVES while sitting around and BLAMING ME for beeping instead of actually investigating the situation.

So I've broken my long hiatus to bring this safety message to the world: STAY VIGILANT! DO NOT BECOME NUMB TO THE BEEPING! It may save your life in a totally unexpected way one of these days.