So 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.
Category: dear diabetes (Page 6 of 10)
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.
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.
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…
It feels like a year ago already, but last week I sat down on my couch and felt a bit weird, I’ve had trouble feeling my lows lately, so I thought I’d be super proactive and test, even though my Dexcom said that I was fine … 38. That was not a typo. 38. That is the third time I’ve been in the 30s in as many weeks… #notgood. So I immediately get up to get juice, gummies, pretzels, almond butter… pretty much everything from my kitchen – at which point, standing up I all of a sudden felt everything… dizzy, getting hotter, couldn’t remember why I had stood up… “oh yeah… juice, right, yes, that.” I somehow figure out/decide on what I want out of my kitchen – it seems that the lower my blood sugar is the longer it takes me to decide what kind of juice I want, and whether it’s cold enough, and if I want it in the box or in a cup… why does any of that matter when I’m about to pass out you might ask… I’ll let you know when I figure it out… — so I make it back to my couch, at which point I do something radical, I reached out for help… I text 3 friends, one to talk to, one to be dia-honest with, and one to save my ass… and each one responded and was there for me in their own way… I made it through, obviously, otherwise I wouldn’t be writing this, but it took almost an hour before I was in normal range, and it hammered home the point I had almost already accepted… I need help. Like real help. What I’m doing right now isn’t working. And pretending that it is working is starting to get dangerous.
When I came out, and then started dressing as I’m comfortable, it became very clear to the rest of the world (by their standards) just how gay I really am… which in case you’re still confused, is really really gay. However, when I was diagnosed with diabetes I just kind of looked like I had the flu, and then with my sugars under (relatively) better control, I went back to “looking normal” (whatever the fuck that means… another rant for another day). So here’s the problem with all that… I’m actually kind of sick, and more recently, really sick. I hate that word, you won’t really hear me use it, but in the dictionary definition, objective explanation of things, that’s what I am… my body doesn’t work right and it makes me feel like shit, lately it’s been doing that a lot, and if I don’t get this shit under control soon, it’s just going to spiral… I’m saying this “out loud” as much to the internet as I am to myself. Things are not okay. So I’ve come to a big decision… I’m going to head back east to spend that time with my family… so that I can get better… that’s right, I’m going to let my family help me. I never thought this day would come, I say this sarcastically, but also not really. I said in a previous night scout post that I would never let my parents see my numbers… well guess who is going to setup night scout on their devices for them… that would be me. I even heard myself agree when my mom suggested that they put a baby monitor in my room… I’m 27… and I’m so scared by my lows recently that I actually agreed to that. That should give you a little hint to where I’m at…
In many ways I’m grateful I can get away with passing as being well, it means I don’t have to discuss my health with everyone I meet, I don’t get the fake sympathy, or the weird looks that other illnesses can bring… but for me “passable” has also meant denial, lots of lots of denial
This is by far the best, simple concise explanation of type 1 I have found… thank you @HelmsleyT1D
Type 1 diabetes (T1D) is a life-altering autoimmune disease that afflicts nearly two million people in the U.S. alone. There currently is no cure and the number of annual diagnoses is on the rise. It is perhaps the only disease in which patients are required to monitor their condition constantly and make their own dosing decisions with a drug that, if improperly administered, can kill them. It is a dangerous and relentless 24/7 grind, and research shows that the vast number of people with T1D are failing to properly and safely manage their disease.
With T1D, the body attacks its own insulin-producing cells in the pancreas. Insulin is a hormone that enables the body to metabolize and use glucose. Elevated glucose levels can be immediately life-threatening in severe cases, but more commonly they can result in a range of serious long-term health complications, including blindness, amputations, heart disease and kidney disease. T1D is managed today by a rigorous regimen of monitoring glucose levels – either by pricking one’s skin multiple times per day or wearing a subcutaneous continuous glucose monitor – and then administering insulin via injection or an insulin pump. None of this process is automated currently, which means end users (or their caregivers) must play the role of a pancreas.
today I setup the wifi-only samsung galaxy I used to test the NightScout system so that I can stay connected to the NightScout server while charging the samsung galaxy that’s on a data plan… meaning that I can stay on the NightScout monitoring system all the time… that’s right people, I am actually trying to stay on something that might help me… and god help me, I’ve agreed to setup my parents so that they can see my numbers too… just in case… wooo sahhhhhh
I should probably write about my progress with xDrip… which has been tough, but productive, or how I’m doing with diabetes, bad… but instead I want to talk to you about something wonderful… I’ve been finding pennies everywhere… I had a hunch that my grandfather had something to do with it (yes, I’m about to get all woo woo with this, if you’re not down go read something else)… just confirmed with my mom that I was not making stuff up in my memory, that Tuck (as we called my grandfather) did in fact collect coins from all his travels… I’m talking about spooky, ridiculous, frequent penny finding… I have a thought, I see a penny… holy shit, that thought has just been validated… maybe I’m nuts, but I have a lot of shit going on right now and whether or not I’m making this up in my head I don’t care because it’s helping me… so Tuck, if you’re listening, thanks — keep ’em coming, I need the support. I love you. that is all.
So I had setup my night scout before, but I was using a dummy phone, only on wifi, last night I set up another phone that is on a plan… so all day today I’ve been able to see my numbers while I’m working… without moving or pulling anything out of my bag… I feel a bit off… swipe over to the open browser tab and see how I’m doing… or if I’m already working in the browser window I can just look at the tab name and see my number and my trajectory arrow…. I’m not sure if I can describe how freaking revolutionary this feels. I’m so glad I decided to build the night scout, even though I thought it was only really for parents with t1d kids… I was totally wrong. I love this. Seriously, I might cry… this is so f****g cool.