Dear Diabetes, you suck.

a web developer who also happens to have type 1 diabetes

Month: October 2016

but first I need to be well

I have so much that I want to do, but first I need to be well. This might sound ridiculous, or ridiculously obvious, both are on point — but for me, for the moment it’s a revelation. Everything else in my life is contingent on getting well. I cannot do good work when I am being woken up 2-3 times a night by my dexcom because I’m 50s and dropping, or needing to get up to pound water and make corrections because I’m 300+. This is not a way to live. How can I expect to thrive if I’m still struggling to live. This may all sound ridiculously melodramatic, or obvious, but for me it’s huge. I’m hesitated committing to a home group, to a lease, to a city, to friends, to a work situation — I’ve been in a city with out my dog for a year because it hasn’t been stable enough for me to be sure to bring her out here. what the hell does that say about the situation I’ve let myself live in. Wanting something and losing it is worse than never wanting anything in the first place… this is a terrible plan… this is the plan I have lived my life by, each time I have taken exception to it, it has come back to bite me, and then I return to it with even more of a vengeance. There are people in my life who have tried to guide me through this, each time I have balked and run. I’m taking myself back to school — the only way I know to approach anything, read, research, interview — and then attack. So back to the literal obvious manifestation of all of that in my life — diabetes. First, send my first ever for real basal test to the consultant I’m working with — yup, bit the bullet on that, after probably a year+ of debating on it… yup commitment issues in yet another aspect of my life. #patterns

Fear and OpenAPS

I’ve said many times that my tactics and feelings toward diabetes would be entirely different if I were a parent instead of a patient. In one aspect I think that might not be true, fear. I strive to be fearless, for many years I would have told you that I wanted stability, my actions told a different story, I move where opportunities are, for many years I determined what I wanted to do by just picking the hardest thing I could see… I’m not kidding here. In that vein, more than a year ago when I discovered the OpenAPS project my eyes and my heart lit up, here were other problem solvers who had found the next step… and they were (and are) passionate about bringing as many people with them as want to make the journey… and I want to make the journey, but then here my actions again tell a different story. I’ve had the plans, even the parts, just sitting in my living room for months, with just one or two stretches of days when I have made concerted efforts to make progress… this is really weird for me. I have a puzzle, a problem, and the parts to build a solution, and they sit on a desk next to a stack of random medical paperwork to be filed. How is this possible? I actually picked up those parts and put them on the desk in an effort to get started again, to put them in a place where they would be easily accessible, setting a space that could be a working table, and still they sit gathering dust, slowly becoming obsolete, a reminder in my living room that, at least in this respect, I am not living up to my own standards and values that I have for myself. No one else is going to come up to me and say “shame on you for not building a raspberry pi version of a pancreas” — but I am ashamed that I have not built it yet. I have all the parts. True, I need infusion sets and reservoirs, but I can definitely complete more parts of the build without them, not to mention I could be trying harder (or at all) to find a way to get them. I feel like the clock is ticking in a weird way I feel compelled to have completed this project before there is an artificial pancreas available commercially, like the fact that I won’t have beat industry is some further judgement of my abilities or drive. I’ve given this a lot of thought… what am I afraid of? fear is the only thing I think could be keeping me here — I’m terrified that I will make a mistake that will prove to be deadly. And in what feels like the antithesis to every fiber of my body, I would rather struggle through with the tools I have than risk my life trying a tool that has the potential of changing my quality of life be so much. I almost can’t even fathom a life where I’m not having to be hypervigilant about where my blood sugar is and what that is going to dictate in my immediate future. It has rendered me largely sedentary, hesitant to push the envelope in anyway that might upset the precarious balance of my blood sugar, or any more than it is day to day anyway. So when will I finish my OpenAPS build? I don’t know. And that is a huge embarrassment to me – the worst and usually only critic to which I answer.

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