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?
what my BGs have been doing
so my numbers have been kind of crap recently… I’ve been honest about that, haha. After having a hard look at the real data I started testing out temp 5% basal increases for a few hours at a time, that seemed to bring me right back into range, so I was starting to track where I would want to add the changes to my regular basal routine… and then, just like that I started to run low, without using the basal adjustments — go fucking figure. Honestly, your guess is as good as mine… okay, maybe not quite as good. With a dodgy work situation a few weeks behind me, maybe the relief from that stress finally made its way to my endocrine system, maybe the diabetes fairy decided to be cool this week… I don’t know, and I’m trying not to ask any questions and just keep doing the things I can control — eating right, testing regularly… etc., etc. Hoping that the (good stress) of MedX this week doesn’t spike me back up… it might, but here’s hoping it doesn’t. On that switch topic note… I am so excited for Stanford #MedX, and even more excited to be an ePatient this year — too many things to talk about… if you’re interested you can sign up to watch livestream or checkout the twitter hashtag #MedX and/or me @thacherT1D
So my most recent A1c was not great. I’m scared — I’ve become comfortable with vulnerability, it’s been the only way I’ve been able to make progress, but it’s hard when it feels like I’m living in a constant state of fear.
I’ve had a rough couple of weeks at work — I was so excited to accept a position teaching at the school I just graduated from, bringing up the next class of web developers in a program focused on helping student transform their lives (I know it’s a bit over the top, but really almost every student is here to make a drastic change in their lives, transformation seems to be the only word that fits) , but then my lead instructor turned out not to be what I needed or wanted in a boss — it took a month of trying to find a solution, going through the right channels, but I finally am now in a situation where I am happy and feel like I can actually grow and help the students grow as well. My whole body relaxed when I found out I wasn’t going to have to work with him anymore — Friday night, the ending of the week that ended this drama, I slept 14 hours more or less straight through.
My numbers have shown the stress, I’ve been stuck in the low 200s and can’t seem to kick it — and my body, my mood, my A1c reflects it. I’m hoping that with this new page at work I can slowly start to make the correction. It’s just so scary and I can’t decide which is worse, long term complications or short term sharp lows… I had to treat a low while teaching a lesson the other day… pounding a gatorade in between calling on students — hoping that my voice wouldn’t start shaking enough for them to notice, hoping that today would not be the day my co-workers would be tested on whether or not they really understood how to administer the glucagon… and then just like that, with half a gatorade down, I was in the 200s again… not great, but safe. I know there is a better way, I’m just tired — this is hard and there is no opt out button. Hopefully the new work situation will allow me to allocate effort back to my personal stuff… and when I say stuff, really I mean health and well being, because let’s be real, I don’t get to have stuff that comes before my health… and if my health takes up all my bandwidth, then I don’t get any time/effort for my stuff, for projects, for going outside, for doing anything other than taking care of my fucking heath… for 10 minutes of forgetting that I have this stupid disease. rant over. I need to grasp some of this time and actually go build some shit… a Harry Potter API may not be the best use of my time, but it’s fun, so there’s that, haha
yeah. not good. not terribly surprising… well, a little surprising… fuck. stress? school? depression? all of the above? none of the above? Now what?
without going into it too much I hurt my ankle tubing down a river this weekend… I also smacked my chest and almost ripped off my dexcom sensor/transmitter… yup the same one that I just had replaced. So I took off the sensor yesterday and I just haven’t put it back on yet… I know that I need to, but I just don’t feel like it. I don’t even care what my numbers are right now. I just don’t care. I’m so over everything. I should be tweaking my (diabetes related) capstone project, or working on my Open APS, or writing my… so many things… so I took a break from writing this and did some things… then I sort of felt like I was shaking, but I’m not wearing a sensor so who the fuck knows… just tested… 57… fuck me. so the “do I really need the dexcom?” test has been proven again, again, again… not that I really needed to prove it again, to anyone except for maybe myself…. and yet I still sit here typing, not having eaten anything, not even checked my bag for anything, in fact I’m only 50% sure I even have any sugar with me right now. I’m going to end up in trouble… this is really no bueno… I tell myself still sitting here, still doing nothing. I guess I kind of feel like a dexcom is something for little kids, something I should have grown out of needing already, the training wheels still hanging on that I “should have” shed already — these assumptions make no sense, diabetes doesn’t acknowledge age or supposed maturity, there isn’t a way to “test out of” this phase of diabetes. Ignoring this isn’t going to make it go away, but I guess I’m going to try anyway. This doesn’t feel like an active decision, it just feels like not having the effort to do something else on top of everything else. I just don’t want to, it feels like I can’t. I can feel my balance starting to go off, even just sitting still in this chair, so I should probably really take care of this. I know all of the bad things that come along with this… one of these days I’m actually going to end up in the hospital, not today I don’t think, we’ll see I guess. I feel like I already know the outcome… another rebound high sitting in my apt, not being functional enough to get anything done, not peaceful enough to get to sleep. Another night of interrupted sleep, waking up tomorrow with a list of things I didn’t get done tonight because diabetes killed another night/day/time of being able to be productive. Really it’s a miracle I’m able to even write at this point… I wonder if this will make any sense if I read it later… whatever. fuck everything.
Sensor went back on — it’s peaceful, but stressful without it… while walking/hiking I didn’t have to deal with the incessant alarms, but I also think I dropped really low based on shaking and didn’t stop to test. I’m a terrible diabetic… at least I’m a terrible diabetic who is still alive… the other option would kind of suck.
Good news is that Dexcom is replacing my transmitter, so hopefully I’ll then be able to start using the G5 app again, because it’s super lame to have to use the receiver… funny how spoiled I’ve gotten, last year I had just barely been able to use the apple watch to see my numbers, which were still relayed to my phone from the receiver… now I walk around with just my phone in my pocket, almost like a real girl. or I will once I get this new transmitter. *Side note the guy I talked to at Dexcom was super sweet, after I walked him through everything I’d tried and he confirmed the transmitter’s performance with my data he told me I should call them sooner if I’m having a problem and not to wait so long… true life feedback, ask for help sooner.
So my capstone project is relatively done, I still have some stuff I want to do, but then I want to get it on ionic.io and in the app store, at least as v1 so I can get it out to other diabetics and chronic patients for feedback and input on future features. I’m excited to start really using it myself too! Also, being done with my capstone means I can start work on Open APS again!
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!