24/7/365

Diabetes is, of course, not optional. I should know, I tried to ignore it for a few months back in 2014 and it made its presence known for sure. And while taking care of myself is (sort of optional) it's really not. But something that is optional is how I do it and what tools I use.

For pretty much the entire time I've been diagnosed, I've used an Omnipod pump and a Dexcom CGM. While the Dex does have its own receiver, I threw that over in favor of the handy feature that lets my BG shoot straight to my phone. I love that feature, and never looked back.

Except a few months ago, when I just started feeling so......trapped....by my phone. I found it hard to avoid the Instagram scroll spiral, wasting hours of my day (!!!) mindlessly transfixed, feeling no more settled or relaxed when it was done. Under the guise of "checking my Dex," I would pick up my phone constantly, and of course I couldn't help but observe the texts/calls/Whatsapps that were/weren't there.

And even when I was legitimately checking my BG, even that was wracked with the same kind of heightened anxiety. I couldn't enjoy any workout class, even if I was cruising at a 145 --->, just wondering and paranoid I was going to drop or drift out of range. I was constantly worried about where I was trending, where I was going.

So I quit, cold turkey. I made a promise to myself that I would check and bolus more religiously, and I followed through with at least half of that. I just needed to feel some agency again.

And while for a long time I couldn't really imagine going without my Dexcom, and the thought of going to bed with IOB and no sensor could send me into an anxiety spiral, that's not really where I'm at right now. It doesn't bother me to prick my finger in public anymore, and it's possible that it's even helping to push me from keeping it to myself so much.

What is the point of this? I don't know really. But it's strange how, even a few months in, it still feels good to have a break from the CGM. I have my endo appointment early next month, so I'll see if it's really wreaking havoc on my A1C, and that will probably inform my decision of where to go next. All I know is that I'm sleeping better, yoga-ing better, and isn't it really all about living better?

I'll Be Back....

Ok, ok, well maybe I am back. I don't know. TBD I guess, TBD.

All I know is that, I recently thought about this blog, which I haven't really thought about in a while. Which I haven't written in in a year and a half. And I re-read it, and I felt like I remembered a bit about who I used to be, not that long ago and still am mostly, a bit. 

I started this blog sort of in 2014, when I got diagnosed. I leaned into it in 2015, when I was trapped in a lonely and failing relationship. There were a lot of things I didn't want to talk about, and while diabetes was one of them, it was the thing I didn't want to talk about the least, if that makes sense. So I jumped in, in order to make sense out of something. In 2016, I was a girl who busted out of a relationship and into adulthood and vulnerability, in life and the internet. I was a real weird little astronaut buzzing around, fearless in all kinds of ways, right and wrong. I could have been more careful with some people, including myself. But that attitude was good for blogging aka spilling your private secrets in public.Well not your real private secrets, only the helpful ones that you need to process. It was good for exploring, good for me.

But 2017, that's when this blog began to drop off and me too. There's all this talk about caterpillars before butterflies, etc. But what people don't talk about is the chrysalis phase you know? Like, maybe it was all fun and groovy, dancing around, being a caterpillar. Sure you're not that conventionally good looking. But you've got a lot of legs, maybe some fuzzy fuzz all over you, you're weird colors, and honestly all you need to do all day is eat and eat. It's not a bad life. You may have some awareness that things won't be the same forever and one day you'll be something else but you're not too worried about that probably. You're doing fine. Until one day, you inexplicably make your way out on a twig, hang upside down (WTF?? THIS IS AN URGE YOU'VE NEVER HAD BEFORE??), build yourself a cramped little coffin out of your own body materials, AND BEGIN TO LIQUEFY. Yes. Liquefy inside your tiny coffin. You will stay here for days (a large portion of a butterfly life). As you melt, uncomfortably, squeeze, morph, whatever. You slowly, painfully, lengthily, prepare for the next phase of your life. I guess you could say that's what 2017 was for me. It was a year of loooonggg drawn out breakups, fractiousness at work, boredom, frustration, confusion, adult acne, you name it it was there. There were positives. Friendships, travel, students. Of course. But overall, it was a tough tough year. And my reflection capacities suffered as a result. Hence the slow, stuttering stop to this blog.

It's funny how very little of what causes me to write here, seems to actually have to do with diabetes. But searching for connection, trust and vulnerability, these are all things that are very linked to diabetes for me, just as much as my insulin brands and insurance woes.

So that brings us here to (barely anymore) 2018. This year I feel like a butterfly...who got launched out of a catapult....but who has maybe (possibly? probably?) landed in a field of nectar/flowers. Maybe I should say a butterfly who climbed into a catapult on purpose, knowing full well what she was doing, and aimed in the direction of a likely field of flowers and happened to actually land there, through some planning and preparation of her own but also through some luck and also her own tenacity upon landing. You know, just to keep it accurate. And pithy. 2018 was a great and adventurous year. The butterfly cemented friendships, swung on swings, took a lot of what she learned about failure and used it to take more risks, traveled to new cities and took a road trip (a few), moved states, made friends, lost friends, started going to butterfly therapy, cuddled a lot of dogs and posted a lot of Instagram stories.

And then I wound up back here. Looking for the best parts of what this blog used to bring me. Feeling pride at what used to be happening here, at what my words on the screen used to look like. It interested me, what has changed (some) and what hasn't (a lot). So, I think that it's safe to say that I'll be back here, to this space. Maybe writing some more, maybe doing more to reach out, maybe just reading it to remind myself that I have these feelings and needs, no matter how much I do or do not focus on them. As I'm pinging around this universe, this is one of my home planets. 

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. 

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.

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. 

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 Brené 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?

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.