My iPhone has been on the fritz or so I thought, turns out when I uninstall the dexcom G5 app it’s just fine… I had a hunch from having to have a phone replaced and then having the second one start freaking out in exactly the same way… I’m not sure how I’m going to handle this moving forward… is it this specific transmitter? is anyone else running into this issue? use another phone/device? shit I was using the other iPhone for app development testing… but if I need it for my dexcom, I guess I’ll figure it out, but shit, then that phone will need a data plan… just use the dex receiver? ugh, please no. how will I handle the relay to my watch? to nightScout? (right now my new site — which is also part of my OpenAPS development — is tied into the g5 relay)… fuck, this has even more downstream consequences than I realized… guess we’ll start with a question to the diabetes support fb group and a call to try to get this transmitter replaced before cracking the seal of my other one and gambling on a) that being the problem and b) that one then lasting through when insurance will cover my next ones… fml.
So yeah, also as of right now I’m not wearing a sensor, at all — I figured if I was going to test whether or not it was the app that was messing up my phone I would just take a short break, but now I really don’t want to put one back on, I kind of like being free… I mean I hit 500+ Saturday night because I decided to eat a shit ton of carbs and just not bolus for them… can’t really tell you why or why not, just didn’t. After the initial victory of having bought groceries, for the first time in ages (I actually have food in my house!! woot woot!) then just crash and burn… or spike and burn, whatever. Add to it that I haven’t really been taking my am meds, which in my head I don’t really need… which I somewhere deep down know isn’t true, I wouldn’t be prescribed them if I weren’t supposed to be taking them… but I don’t want to and the one makes me feel nauseous unless I eat and eating in the morning is annoying. I guess not as annoying as being depressed all the time, but you know… it’s all about perspective. It always blows my mind when things are relatively good and my head is able to make me feel like the world is ending anyway… how is that even a thing… like when it convinces me that I have no friends or that everyone is mad at me.
Okay, so I’m still working on the Open APS, but it’s had to take a bit of a backseat while I wrap up school, or at least while I build my final project… which I could use some input on… I’m starting on the build, well I’ve started, but the picture is just an image mock-up…
In the simplest terms, I want to know how many days I really wear my dexcom sensors (I know… 7 days… whatever whatever). This is where this idea started because I have tried all the ways I can think of to track this… spreadsheets, notes on my calendar, tracker apps… nothing seems to fit into being able to be used quickly, being able to see the data easily, and being able to download/use the data outside of the app… so I’m building it.
If you are a patient or caregiver of someone with a chronic illness, would you use this? If yes or no, why? Is there anything else you would add?
Feedback here or on twitter @thachert1d would be great — thanks!
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.
I’m so tired. I’m working so hard in school and I love it, even if it makes me want to break my computer in half or fall/crawl under a table at least once a day (maybe more, haha). But on top of that, as always, I’m dealing with diabetes and mental health. I started a new mental health medication this week, Monday I was so nauseous I had to go home from school early, barely avoided throwing up in the uber on the way home and then crawled in bed and slept through to 7pm… this does not help with being productive at anything. I changed up my breakfast to account for the nausea and now my blood sugar has been CRASHING as soon as I get to school for the past three days, so now what do I do? a million options and a million^2 possible outcomes to consider and I’m just tired. I don’t want to figure this out. I don’t want to be shaking at my laptop in the morning, not able to concentrate. Having to quietly tell a friend that I’m really low, just in case… I hate this. it’s terrible. I wouldn’t wish this on my worst enemy and it’s NEVER GOING AWAY. EVER. this is exhausting. I just want to craw into my bed and never come out. the worst part is these past weeks have actually been relatively good… yes, this is my good. how fucked is that. I’m so sick of this. There has got to be a better way, and that’s why I’m in school to figure this shit out. But my day to day is getting in the way and it’s never going away. fuck this.
I’ve been thinking I should probably try to write on a day that I’m not raging and mad at diabetes, so I started writing today and I remembered that there are no days off, there are no days when I am not mad at diabetes, because there are only brief glimpses when I forget or I’m not worried about something… when my current pod expires, what my blood sugar is, if it’s going to stay there, is it affecting my ability to concentrate or do what I’m trying to do, do I have snacks with me, if not where are the closest ones, where’s my kit, is my phone working, if not is my receiver working, if not… wtf, how do I fix this… that all is literally in a minute or less in my head all the time. And I’m supposed to be able to carry on like a normal person, be able to think, get work done, cook, take care of myself, all while making thousands of micro decisions a day just to stay alive. I shouldn’t have to text my parents to tell them that I’m not passed out and dead twice a day when my low BG alarms go off, I shouldn’t have to second guess every chill, every shake… I just mistyped a word, did I just make a mistake or am I shaking from a low I haven’t felt… who the fuck knows — I wouldn’t know without my Dexcom, I don’t feel anything until I’m in the 50s… which is less than ideal. Anyway… this is me not rage-y mad, just regular daily diabetic life mad. There has to be a better way…
another basal adjustment… while I am encouraged overall with the progress I’ve made over the last couple of months with progressive basal rate changes, slowly creeping into good daily ranges, I can’t help but ask why? why am I requiring that much more insulin daily, remembering that increasing by .05 units/hr over 20hrs is really only 1 unit/day … but it’s one unit that I didn’t need before. why the change? “just because” is common wisdom, but I don’t get it… it’s not like my dead pancreas suddenly got more dead… resistance to the insulin? by that small of an amount? I don’t know that seems to be the only plausible theory, but either way I’m irritated by it, and by having to make progressive changes, why couldn’t there be some way to know that I would need to go up by .20 units/hr across the board (except for 3:30pm-7:00pm mystery drop time) and just make that change once, why do I have to suffer through months of incremental changes? From a scientist perspective and a safety perspective I understand why, but as the patient, it’s fucking frustrating to have to be okay with incrementally better when it’s still shitty overall… I don’t know how to fix this, but it should be fixed. I’m adding it to the list… fuck diabetes.
to be totally honest it’s not been a great emotional diabetes week, but this morning I looked at Dexcom Clarity just because I still had the tab open from the other day… and my estimated A1C over the last two weeks is 7.7 down from the last estimate of 7.9 (I know it’s not perfect and this is probably within the margin of error, but it makes me happy so I’m keeping it). I have also brought my average BG down 8 points to 174 which again, isn’t huge, but it’s progress and after the last couple months of what has felt like constant basal rate adjustments and struggling to concentrate in class through ridiculous spikes, hopefully that’s behind me. I’m incorporating more exercise, or at least more movement, in my daily/weekly schedule and trying to be proactive in mitigating lows… overall, I’m declaring a tentative win for the last two weeks… go me!