life with type 1 diabetes


medtronicPumpthe 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┬áloss 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.


  1. Chris

    I am excited to see how this works out for you. I just stumbled on your site by googling “so give me some f*ing insulin” in response to my medtronic pump going off on a 242. Constantly. Really, quit b*ing and give me insulin. You know I need it, BG’s still rising, so why should I have to tell you? It’s what you oughta be there for. At least it cuts off when I get too low…which is a start. Just a word of advice WATCH YOURSELF when it comes to that Enlite sensor / CGM and calibrate often. It’s been off by over 100pts on me before b/c of doing minimum cals, at least when the sensor nears “age”. Another point of interest is when it reads low (75), cuts my insulin, and really I’m at 150. Rough time. I just wish they’d go ahead and make a permanent CGM that stays attached to my bloodstream instead of this “riding the after-the-fact train”. It’s not like I’m going to temporarily have this thing. Oh, and having the pump on the opposite side as your transmitter? Forget it, weak signal… but I can go take a shower with the transmitter on and the pump by my sink and it picks up readings somehow. Heh.

    • Sophie

      thanks! I love that my site comes up when you google that! I have no intention of switching to enlite for the exact reasons you mentioned. Going with a minimed pump for the build, but staying with Dexcom for my CGM — hopefully experience with this build will help me to contribute more the the OmniPod build out of the OpenAPS… #dreams