life with type 1 diabetes

Year: 2017

why I just turned off pushover alerts

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

OpenAPS A1c

7.3 A1c

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.

 

 

Still. In. Range.

OpenAPS NightScout Dashboard

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

A1c and self-worth

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…)

holy fucking shit

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.

The day I uninstalled the dexcom app

iPhoneMenuBar

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.