really I feel like I don’t need to add any text to this… nothing has changed between these weeks, my schedule, my diet, my sleep (except for falling asleep b/c my numbers have been so high)… literally everything is the fucking god damn same. except for not (see above). and just a two weeks before that I was fighting chronic lows. what the fuck diabetes. I don’t have time for this. and btw no number of espresso shots counteract 400+ BG… try staying awake/paying attention through that… fuck me. fuck diabetes. fuck everything. Thacher out.
Do I have that much school work or am I avoiding failing by avoiding starting… all the parts are here, even the insulin pump. I’ve decided how I want to approach it — I’m going to wear the medtronic pump without the APS for a few days while I build it and to make sure that my baseline settings are right with a different pump and get used to the medtronic controls… the build should be straight forward, I know I’ll run into hiccups, but I also know from other builds that I won’t know what those are until I get there. I know where to reach out for help, I’ve started reviewing documentation, so why haven’t I really started? I’m scared. I keep identifying fear, but then not moving through it. I’m frustrated by my own inaction. I know the next steps, but at the same time don’t know what to do. I am busy to be sure, between school and relative extracurriculars, like the hackathon I’m at right now, I don’t have that much down time, but this is my health we’re talking about, my quality of life… why am I not making time for it? Am I being too hard on myself? Probably. Do I need to be hard on myself to get started on this? Probably.
the parts are slowly arriving, just waiting on the insulin pump — I’m scared. I’ve told people that I’m doing this because it’s cool, but also to help stop me from backing out. The volatility is comfortable, it’s what I’m used to — I don’t know how to function in any other way than I am functioning right now. And more than that I am afraid to hope that there could be another way. because if I hope and fail it will be worse than if I didn’t try at all… that is how I feel, but in the next breath I’m going to tell you that that is a pile of horse shit. there are plans out there, not “plans” from the universe, but actual plans that I can read on github that can guide me to building my own solution, a better tool than the ones I have, a smarter tool that could help me live better, both mentally day to day, but also in the long term, better health outcomes, no amputations, no loss of sight, no limits… I have things I want to do. I want to hike the grand canyon, I want to climb machu pichu, these are just the first two I can think of right now… those things can be done with the tools I wear already, but they could be done better, easier for me, with better tools. But I am still afraid. most of the parts to build a better tool, the artificial pancreas are sitting in a box on my coffee table in the apartment I live in that is in the same building as my friend… not only because that’s fun and awesome, but also because if my parents see my dexcom reading drop too low, they can call said friend so he can come down and administer glucagon, so I don’t die alone in said apartment… this is my reality. I have the parts to make a change, to try to build a better tool. but I’m still scared. every time I think about building it I feel a spike of excitement, and then a second wave of fear, warning me not to get too excited because I could fail… warning me against trying because then I would be doubly disappointing because not only would I have failed at a project, I would also have failed at creating a better life for myself. Invalidating my status as a patient engineer, making me a failure… I recognize that these are just feelings and that there is an entire community out there for me to reach out to and ask questions of, rooting for me to succeed in this project… but I am still scared. In this next week, waiting for the delivery of the last part… the crucial part, the insulin pump which will take suggestions from the closed loop system… I will work to turn the fear into determination, to translate it into power to get this shit done, and ignore all the other shit I’ve just talked to you about. TBD, will report back.
I said I would never switch to a tubed pump, I stand by that, but for now I’m going to build, test, and possibly wear the artificial pancreas, which is uses a medtronic mini med pump… which is a tubed pump. Bring it on. All the parts have shipped, hopefully to be here by the weekend. I’m feeling confident enough in my basic development skills now to build the artificial pancreas based on the open source docs available. I am so excited to start this project. Night Scout and dex drip were so fun to build, and ground breaking in their own ways, but this
could will be life changing. I’ve had terrible lows the last few nights, no sleep for me, worried parents, chronically under 60, too exhausted and grumpy to get up to fix it, playing with fire and a big gamble with my life, I know that might sound dramatic (and let’s be real it is), but really, I’ve heard of people having seizures and not being able to talk under 50… I’m under 50 at least a few times a week, if not once a day… the last few days more than once a day. this is no good, the artificial pancreas should fix that… we’ll see, this will be amazing.