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!
So for this most recent adjustment adventure, I made my first basal rate adjustment on Feb 18th… on the left you can see two weeks of what prompted me to start making changes… to boil it down it’s an avg BG of 225, estimated A1C of 9.5, 71.4 % in high range… not great… so 4 basal adjustments later overall to bring me down, but also a time window adjustment for my 6pm drops (still a mystery)… and I’m now down to an avg BG of 182, estimated A1C of 7.9, and 54.8% of time in the high range… significant improvement. Still a bit to go, I think my dinner time ratio might need to be extended later because I’ve been eating later lately… also desert pop tarts… hey, diabetes is supposed to fit into my life, not the other way, right?! (#pipedreams) but my last adjustment was on March 25th, so I’m going to wait to see how this floats out before making any more changes, can’t be changing more than one variable at a time #science. The sum of this is that I am doing a good job. I get down on myself a lot, but looking at this progress over the last two months I’m proud of the fact that I made these choices myself, I consulted with my doctor, but she just confirmed the decisions I had already had/proposed. Feeling better, now just starting to incorporate exercise and since I’m back in normal ranges I can’t just do whatever because I’m minus most of the buffer now, so back to being aware of using temp basal rate lowering for 3 hours around/including exercise time… ugh… maybe I should wait on that too? haha, yeah no.
another day, another full day +5% temp basal rate… this is not how it is supposed to be… my diet is mostly on point for a diabetic, which is equivalent to being way on point for normal people… and still averaging mid-200s with the 1-3 random quick/dangerous drops, sometimes around 6pm… yeah, that’s a workable, livable situation… /not. Oh, and maybe I’ll try to get into a gym routine again… that should be easy/fun … /not.
So here it is… report card for two weeks on the new basal rate — I had to go back down for a 3:30pm to 6:30pm time frame, I’m not sure if it is the basal rate or my commute (walking to the bus and then walking home from the bus), but really the amount of walking shouldn’t (and hasn’t previously) affected my BG to that extent… so that explains/accounts for the lows around 6pm. Other than that… let’s take a hack at analysis…
All of this is good — I came down an average of 37 BG, but looking specifically at the average numbers over time, that change was mostly during the day, with night time numbers staying around 230 BG — I estimated that the change across the board would be 30 BG… so that’s pretty damn close… the night time highs could be affected by the lower basal rate from 3:30pm to 6:30pm, but that’s a stretch because really it’s at least 4 hours from the end of the adjustment to when I go to bed, so there should be sufficient basal on board…
lower estimated A1C, lower average BG, minimal increase in time with low BG, but it also indicates that there is more to be done to bring me into my goal range, particularly looking at night time highs (also known as cinnamon brown sugar pop tarts for dessert… or at least exacerbated by…), between a little dessert and having to rebound/treat for a 6pm low my over night numbers are significantly higher than my day time numbers, and outside of my goal night time range of 80-180.
So next possible hypothesis/adjustment… another basal adjustment or a carb ratio adjustment in the evenings… I’m hesitant to raise my basal at all in the evening because of the pattern of 6pm lows… my current average BG over the last two weeks has been 191, so I could lose another 30-40 (.05 /hr adjustment result of -37 BG) and that would put me in range at 154… but if I wake up in a better range it should bring my whole day back into a better spot… okay, so night time basal adjustment, plus trying to cut night time eating… or at least being sure to bolus for the correct amount… so night time bumps up .05/hr to 0.4/hr from 10pm-4am… night time bumps are scary, but okay…. another hypothesis of 30-40 BG average drop… with better night time numbers and minimal change to day time numbers…