Saturday, July 8, 2017

Are You OK?

Here's why I find that question so infuriating, even though people mean well when they ask it after a beep, or a finger prick, or a bolus, or anything really.

It's so frustrating because, it really highlights how much they don't see. Yes, I'm okay. You're watching something I do multiple, multiple times a day. Multiple times an hour. You're watching the inner workings of my life. And when you act surprised, you are projecting that it's a burden. You're making me feel like it's abnormal, like I might be sick, implying that something must be wrong.

When in fact it's the opposite. This is what I look like when I'm healthy. This is what my life looks like. This is who I am when everything is okay. 

Wednesday, July 5, 2017

At Ease

3 years ago today, I was laying in a hospital room, letting go and finally admitting something was wrong with me. The relief of my diagnosis was overpowering--that feeling of realizing that it had already happened I was sick--and more than that, there was a way for me to get better (at least somewhat better.)

That was a type of ease. 

Today, at 3 years, there's a different kind of ease. There's an ease of surviving without my CGM for days at a time, hiking, running, exercising, sleeping, trusting my body all along. There's the ease of knowing my body's patterns before sleep, when snacks are needed and when they're not. There's an ease of packing, little kits and ready-made bags that I can throw into weekenders. 

I've been enjoying Mary Olive lately and especially her poem, "The Journey," especially the part about "saving the only life you can save." There's no going back from my diagnosis, all I can do is save the life I have now.
















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?