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!
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.