I’ll start with just saying how grateful I am for my OpenAPS… but I am deep in alarm fatigue. I got maybe 2 hours of uninterrupted sleep last night, alerts that were warranted, and ones I didn’t quickly “acknowledge” so they kept going off — while I know that I want my OpenAPS to work, I am so tired of the alerts. I know how to enable and disable them, so for the moment all pushover alerts are off. I’m back to just the Dexcom alerts, which is hilarious in itself because I used to feel like I was getting alert fatigue from just the Dexcom alerts… how my future self must have been laughing at me. I have been struggling big time lately. I had such a big victory getting my A1c down to 7.3 from 8.9 in my first 90 days with OpenAPS and I feel like I’ve done nothing but struggle ever since. That’s what started me working with the pushover alerts in the first place. In the beginning I liked reading the logs on my computer at work, at home, on my phone, but now that I trust the system (that I built btw…), I just want it to work… I want to reclaim the daily brain power that it’s taking to maintain this system… or I want golden numbers… this seems like an impossible ask. Do I get to have a life, or do I get to have “perfect” numbers… I don’t think I could truly be happy with either solution alone. I’m feeling a bit melancholy, but it could just be exhaustion… hopefully I’ll sleep better tonight… and not lose control of my numbers without the pushover alerts… wish me luck, and sweet dreams
This is what 90 days on OpenAPS looks like — I can’t believe how well this has worked. I almost said I couldn’t believe how easy this was… it wasn’t easy, but honestly with the results I’m getting with it… it wasn’t easy getting here, but it has absolutely been worth it. I can now talk about how I got to this good point rather than how I hope to get to a better point — it feels like I can finally start planning adventures that require me to be healthier instead of waiting and waiting until I’m healthy enough.
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
I’ve always tried to distance my A1c value and my self-worth, but it’s really hard not to see yourself, or at least your success or failure in that number. Just like blood sugar everyday — is it a good number? have I been good? is it a bad number? is it my fault? am I good or bad? what does this mean for the rest of my day. I’m trying to get some other health stuff in order and to move forward I need a letter from my endocrinologist saying that I’m in good health enough for it and right now the answer is no… that phone call hurt. Everything else is in order, but my blood sugar. It’s a fucking kick in the gut… It’s been just about a month on #OpenAPS, but it will take 2 more months for this new life to be on an A1c instead of post-OpenAPS numbers balancing out pre-OpenAPS numbers. The ADA A1c calculator (average BG pulled from Dexcom Clarity) says that I should come in at 8.0… which should be enough (my last one was 8.9), but I hate having to depend on a number that I work so hard to not use to validate my self-worth. My doctor put in an order for a new test… I’m nervous, in a shitty way. I hate this so much. (my OpenAPS only updated calculated A1c is 7.1 — waiting on that to become a reality…)
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.
See… no Dexcom app!
A few days ago my dex sensor failed, so I decided to go without the dex just for a bit… I took it off, placed the transmitter on my kitchen counter next to my grandfather’s pocket change dish and went on with my night. I kept getting these annoying sensor failed alerts on my phone, so I switched my Bluetooth off, but you know, you can only go so long without Bluetooth. So this morning I turned off the receiver… still getting alerts, btw they are REALLY loud, especially considering that they are basically alerting me to the fact that nothing is going on… but I digress… what I did next surprised even me. I opened my Bluetooth menu and told my phone to forget the dex transmitter device. Then, just to be sure, I deleted the dexcom app off my phone. It was so freeing. I know this won’t last… by my very nature I love data and to disregard a device that literally records my own bio data is a ridiculous prospect, but it felt so good. I was camping this past week and my Fitbit died… so I took it off, then I took of my Apple Watch too… that didn’t last too long since my numbers were so crazy, but there was something amazing about not measuring my self worth against a number every time I glanced at my watch. I didn’t even know I felt that way until I took it off. There is so much value in technology, but I think the same way I value standing barefoot in the sand or sitting with my back resting against a tree, being free of these devices, no matter how groundbreaking and amazing they are, just every once and awhile is good for the soul. to remember that I am a whole person just on my own. maybe I’ve been drinking too much tea… I’ll probably get back to working on my openAPS tomorrow, but for today I’m free.
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
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.
At the airport, waiting for my plan to take me to Palo Alto, to MedX… I’ve been waiting for this since… well, really since MedX ended last year. It was a meeting of the minds, other patients and physicians who think like I do, focusing on a collective solution now, rather than waiting for a solution to come down from the sky. The excitement is almost enough to balance out the fact that I had to set my alarm for 4am… yeah, that was unpleasant. All that aside, I’m going through the pre-reading for the blockchain workshop again and it’s such an interesting topic… basically using Bitcoin technology with Healthcare, not sure if it’s scalable, but it could bring a patients data to the point where we could achieve cross provider cooperation… I cannot explain how great it would be if my endocrinologist could see the A1c results that my GP had ordered, instead of me having to bring piles of paper documentation to every different appointment — with some providers not even having all the information for the tests they ordered by the time I come back for a follow-up, effective wasting my time and their time for an appointment during which we can discuss nothing proved with data, only my subjective information as to how life is “going” — even as the patient narrative that has been tested and proven to be insufficient and ineffective at communicating the true status of their situation, good numbers over the past few days can easily wash out the consistently bad numbers of the past few months, and vice versa, leading the practitioner and the patient to decisions that may not be the best course of action for the patient… all of this could be solved if each provider just had the data that is available on their patient… that doesn’t seem like an outrageous ask, does it?