Dear Diabetes, you suck.

a web developer who also happens to have type 1 diabetes

Month: July 2015

living at home

So I’m living at home so that I have more support in getting better/staying well… this is a recent update… it has been interesting.
I’ve come to the conclusion that my dad is a great parent to an adult, and my mom is a great parent to a kid, and at this point I need both.
I wrote about eating a dairy queen strawberry blizzard… my dad was with me, in fact he bought it for me, and said nothing, not “are you sure about that?” or “I don’t think that’s a great idea. where are your sugars?” nothing at all. I made my own stupid decision all by myself. Then when I fell asleep/passed out in the car with 400+ blood sugar he woke me up to makes sure that I was okay, but not once said anything like “you shouldn’t have eaten all that” — just making sure that I was okay and if I needed him to do anything… amazing support, allowing me to make ridiculously stupid decisions for myself and suffer the stupid ridiculous consequences myself.
My mom on the other hand will steal the cookies right out of my hand… and is immediately ready with the “should you really be eating that?” comments, she’ll admit that she’s still learning about what I can/shouldn’t be eating, but she’s not stupid, and trying to explain why it’s okay that I can have six cookies hasn’t yet been successful… I’m a shit liar, and she’s not an idiot. She finds me in the house when I haven’t bothered to do anything about a 70 and dropping low, she is the outside version of the objective voice in my head that gets fogged out when my sugar gets that low.
I need both of these view points, these people as part of my support system, it is funny to really see the difference in the ways that they support me. very lovely.

get one where you can see my pod

IMG_1189there are words I never thought I would say. hiking the Zion Narrows in Utah with a friend (same trip where I had to tape the crap out of my Dexcom to stay on), we were taking pictures of each other in this mini cave on the side of a mountain, I turn to my right side and asked to make sure that I had a picture where you could see the pod placed on my right arm… I am proud that I’m attempting and able to do these active things despite all the extra planning needed to accommodate diabetes. My backpack was a bit heavy with the extra food, juice, and diabetic accessories, my friend offered to take a few things for me… I declined, I want to know what the full weight of enough water and gear is — if I need help a mile or two into the trail I’ll ask for it, but my goal is to be able to carry everything that I need for myself by myself — I will always have to carry those things while hiking, so I might as well adjust to it rather than fighting it… and you know what, it was okay… and drinking water with the added benefit of it making your pack lighter is great incentive to keep hydrated 😉

McGuyvering a Dexcom sensor

IMG_1223So I’m in the middle of Zion National Park, walking through a river up through the narrows… it’s amazing and beautiful, and I’m soaked, it’s warm enough, I decide to take off my shirt, it’s cotton (not my best planning) — what do I discover when I take off my shirt? my dexcom sensor is barely hanging on… I have a few reactions — 1) just rip it off  OR 2) I need it to stay on, but then what if it falls off with the transmitter… thankfully I had a first aid kit with me (one of those prepackaged ones because I felt like I was testing fate if I didn’t have at least a small first aid kit with me, but never really looked at what was inside of it). So I open the kit to find some first aid tape and quadruple the tape all the way around the sensor. So my next thought is that I need to leave it as untouched as possible. I’m already not wearing a shirt, so that works… until I realize that now I am walking around in a national park with a mcguyvered dexcom sensor on my stomach and an OmniPod on my arm… so I guess I’m an out and proud diabetic, and I definitely did get some looks, but you know what? I didn’t give a flying fuck. The hike was tough and I dropped at one point, but I was prepared, I drank A LOT of water, and I had a great time. I fell a few times, maybe more than a few times, especially on the way back, I have a wicked bruise on my knee and two rubs on my feet from the hiking sandals, that will of course take forever to heal, but I am very excited to have completed that hike — it was beautiful, and it gave me notes for how to best attempt my next hikes, and get stronger, and do more stuff and more stuff and more stuff and fuck diabetes. fin.

is it worth it? YES! NO. maybe…

DQ Strawberry Blizzard

coma in a cup? Maybe…

So I was driving across the country, and we stop for a bathroom break… there’s a Dairy Queen… I love strawberry blizzards… I love everything strawberry ice cream. I think to myself “Is it worth it?” the pre-blizzard answer: YES! — then of course if I’m doing that I need chicken tenders too, because I love chicken tenders, they are my go-to fast food food. Still the answer is YES! As I’m eating my chicken fingers with my strawberry blizzard, it occurs to me to test… and look up exactly how many carbs I’m actually eating… roughly 100g of carbs… so that’s not the best idea, but I’m already eating them, so I might as well finish. oh yeah, and my blood sugar is already 300 and I haven’t been able to bring it under 200 for the past 5 days, while running temp basal rates 30-50% above… so then all of a sudden I think (more rationally) that this is a REALLY BAD IDEA… but at this point, even though now my answer to “is it worth it?”: NO. I’ve already eaten the food and I’m just waiting for the impending doom of 400+ numbers, coma/nap, and the guilt of having caused all of this myself, and then the reverse guilt of “fuck this, I love strawberry ice cream and chicken tenders… who the fuck cares, fuck diabetes”

so really, is it worth it? … maybe.

A Large Dose of Reality

From Wired Magazine’s article on hacking type 1:

“Diabetes was no longer a death sentence, but to this day it still means a life shackled by regular blood-sugar checks, insulin treatment by injection or pump, and the constant threat of overdosing on the very medication that’s keeping you alive.” — this part of the article I identified with, it is a very clear and raw explanation of my reality… but this next part I was not ready for…

“Indeed, one in 20 people with type 1 die from severe low blood sugar, not the high blood sugar that was the problem in the first place. It’s a delicate balance.” — wtf. I’m too shocked even to fact check this… I mean I’ve been scared, but maybe I haven’t been scared enough…

Talking about monitoring his son’s BG… “One night, it was 36. Any lower and Evan could have fallen into a coma. He could have died.” — it’s like I haven’t really heard anything anyone has been saying for the last eighteen months. I’ve been trying to carry on as usual… I went on a fucking business trip three days after being diagnosed… Before they had even confirmed a type 1 diagnosis… I should not have been traveling alone, wtf. How many times have I hit lows in the thirties and occasionally even in the twenties while I’ve been alone in my apartment, honestly I couldn’t even tell you… too many to count… fuck, I can’t believe I’m alive. I’m trying to be grateful and have faith, to help pull myself out of fear… But right now it’s not working.

reborn.

It’s as if my life before never existed. Like I was reborn the day of my diabetes diagnosis — a whole new life with this terrible new addition. It feels like the me before died. I’m so afraid of everything, but every moment, every thought, action, and word is covered in the rubber coating that is the glib “I’ve got this, it is what it is, and I’m doing my best” line. Maybe if I say it enough I’ll believe it. I hear myself sometimes when I’m talking to other people, sometimes they’ll even comment on how well I’m dealing with this and occasionally my real voice in my head gets through and calls “bullshit” — I hear the words coming out of my mouth and in my head I know that it’s all a show…that in reality I’m barely holding my shit together, mostly just through complete and utter fucking denial. And if I’m totally honest, somewhere deep down, I know that that denial could kill me, but that’s a gamble I choose over living in fear every day… I also know this is the wrong choice, but the other is more than I can bare. So here I am in total denial with bursts of awareness that this far have resulted in no action. It occurs to me that I should mention that I am doing the mechanical things, I take my blood sugar, I bolus for meals, I sort of try to eat right, except when I don’t feel like it… I’m not entirely non-compliant, but I am not giving myself my best chance at a full and complication free life, I’m on the “just survive” track, I want to be on the “thrive” track, but I haven’t found a way there yet. Playing with technology solutions has helped, but I still manage to separate the project from myself… I have my numbers in a few programs, but I am yet to take the next step to really analyze them… I know this, fuck, this is what I have done professionally… Data is no use without analysis, but I don’t want to see my analysis… I don’t want anything less than an A+ and I know that that is not what I’m going to get from my data… I’m think that I’m going to see “you are a fucking moron and you are setting yourself up to lose both your legs by the time you’re 35 — oh yeah, and there isn’t any pattern so there is no clear action you can take to try to fix this, so have fun continuing to fuck everything up” — who would want to do any work to see that message, clearly not me…

The thought that keeps coming to mind is that I can’t do this alone… I need to accept help, I have asked for help, that’s a big deal for me, but accepting it is a whole other ball game…

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