OpenAPS NightScout Dashboard
I posted this image on twitter already, but it warrants further explanation… at 9:30am I had a physical therapy appointment, at previous appointments I had to remember to set a temp basal and if I didn’t remember ahead of time I would end up dropping low and many times had to have carbs to correct — today I pushed a button on my apple watch and set a “pre-activity” temp basal when I arrived at PT and rode through it without a low. Then I had lunch at 12:30… when I ordered my food I hit the “eating soon” button, again on my watch without having to even take out my phone or my pump… then bolused for the sandwich when it arrived to the table, and look! still even. AFTER WORKING OUT AND EATING I AM STILL EVEN… I’m not sure how else to explain how incredibly awesome this is… thank you #OpenAPS
Looking back at blog posts I have been working on #openAPS in one capacity or another for the last two years. Just double checked it, I placed my first Adafruit order for xDrip and OpenAPS parts on May 11, 2015… that puts us at over two years. What has held me up this long? Well there was a lot of life stuff for sure… moving to DC, living at home, being seriously sick with diabetes fall out, moving to Seattle, changing careers, 6 month intensive software development program, new job, freelancing, another new job, god knows how much emotional turmoil, therapists, new anxiety drugs, my grandmother passing away, one of our family dogs passing away, gender feels, relationship feels… it’s been a jam packed two years, but I can’t help but think how different it could have been if I had had balanced BG numbers through that time… but I just wasn’t ready. Honestly I’m barely ready now, I was not prepared for the emotional turmoil accompanying starting openAPS – it’s like I don’t feel like I deserve these numbers, I’m waiting for the other foot to drop, for it to be taken away, for it not to work, to go back to struggling… that maybe this would ever not be a limit, or a worry or whatever… it’s like just being in constant shock. I’m just sort of floating. I have so many things that I should be doing right now, but instead I’m just here, existing, watching the terminal with my openAPS logs and my nightscout dashboard in disbelief. I was not expecting all these feelings. I’m glad it’s a busy weekend with lots of friends, I’m not sure how I would be dealing otherwise. Catching the lows has eliminated the rebounds and kept me so much more in range I can’t even believe it. disbelief… that pretty much covers it.
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…
This is by far the best, simple concise explanation of type 1 I have found… thank you
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 was so excited when the last of my xDrip build kit arrived, I ripped open the box… and then the box sat there. next to my couch. for over a week. Am I nervous I won’t be able to build the xDrip? Sort of, but there’s more. Continuing the theme of resentment, I just don’t want to need anything to stay alive. I want to be able to be a cave man and live in the woods and eat squirrels… okay, so I said “want to be able to” not “want to,” but seriously, it freaks me out that if all infrastructure went to shit that I couldn’t survive in the wild… I would die, I’m who Darwin decided wouldn’t get to come along with the rest of the class. Fuck Diabetes. I guess I’m back to being angry again… so much for bargaining. Sometimes the grief process feels more like a merry-go-round than anything else… except I’m yet to figure out how to get off. I’m so tired of being diabetic. even just typing that, I thought to myself, “am I really?” — and then that logical side of my brain says “really?! did you just think that?! are you an idiot?” I wish this would just go away. Thinking about all of this hurts. I found My Diabetes Secret () yesterday… an anonymous Tumblr for diabetes feelings… talk about a baseball bat to the stomach, the idea is amazing, what I felt when I really let myself feel instead of managing symptoms or explaining myself to others, was not amazing. It was horrible. I had no idea I was still so upset, and scared, and mad, and all of the feelings. which brings me back to the box next to my couch… I can build the xDrip, I can choose to not build the xDrip, I will still have diabetes. I might as well have fun… here goes nothing… keep your fingers crossed for me…
So I post this last night — I had been delaying going to bed because I had been dropping (and because I’m a procrastinator and am terrible at going to bed on time) and I finally evened out… I was so grateful to be able to go to sleep not dreading being woken up, or not waking up… but that’s a whole other post… this is about what I realized after I posted the picture… do you see it?
What’s missing from this picture? Hint: It’s not Waldo
Did you guess? There are no alert lines… no high alarm, but worse there’s no low alarm… and I’m going to admit this here… I haven’t turned on either of them yet, even though I realized this last night (before I went to sleep?!)… I can objectively see how absolutely ridiculous this is (just in case you were wondering). So I’m wearing this device, that will save my life and wake me up… and I’ve turned off the alarms… I mean, my dog is good, but she’s not 100%… and this is not shit to mess with… so why I ask myself, if I’m already scared of dying alone in my apt, do I then turn off the thing that is supposed to be there to guard against that very fear? The short answer, I have no fucking idea. The long answer, I resent diabetes. I resent every single micro aspect of it in any and all parts of my life… and at the moment it is manifesting in a not so good way. I’m resolving right now to turn on the alarm… just the low one… and only at 75… bargaining… which stage of loss is that?
I AM SO EXCITED. the kit has arrived… time to build a workstation and get this project going!!! I still have not idea if I can still solder or if it’s going to be a total disaster… TBD. Seriously, I am using putting my xDrip building station as bait for getting the rest of my work-work done today… ahhhh! SO. EXCITED. CAN’T HOLD IT IN!!!! Project time!!!!!
so the other day I spiked right after breakfast, I had just been to the doctor and I thought “what the hell, I thought the adjustments were supposed to fix this…” pause and rewind for a hot minute… I failed to take into consideration that the previous night at 1am my OmniPod had expired-expired (meaning passed the additional 8 hours it gives you to change it)… did I get up to change it? no. did I think ahead and change it before I went to bed? no. I thought about it and then I was already warm and comfortable and didn’t want to strip down to have to apply/remove pods, I just wanted to go to bed… so first I get woken up with a low alarm, which I ignore, then I get woken up with the pod alarm (which is way worse than the dexcom… ear piercingly loud), only to silence it and go back to sleep, to be woken up and then ignore the dexcom at least once more… so basically, all this technology I wear does not stand up to an idiot who refuses to use it properly… and when I spike after breakfast… maybe it has to do with me not having insulin in my system for the previous 7 hours… just maybe, you know? who knows? that doesn’t sound reasonable? or like science (#sarcasm)… so the answer is… not rocket science… change my pods on time, listen to my dexcom, and only expect good results if I’m putting in good effort… new page, new day, new chance to get it right… one minute, one moment at a time