today I setup the wifi-only samsung galaxy I used to test the NightScout system so that I can stay connected to the NightScout server while charging the samsung galaxy that’s on a data plan… meaning that I can stay on the NightScout monitoring system all the time… that’s right people, I am actually trying to stay on something that might help me… and god help me, I’ve agreed to setup my parents so that they can see my numbers too… just in case… wooo sahhhhhh
People ask “How are you doing?” all the time, usually I answer with “fine”… well here’s a more comprehensive and Illustrative answer…
This is my latest take on something that could help me to better understand my diabetes and how to manage it. For right now I’m really just reporting findings, but as I get a better sense as to what I can pull out of my devices, I will switch gears into focusing on insights that I can pull out of the information.
Let me start by saying that I used professional tools to get to this point — I could have stuck to excel, but it would have taken me a lot longer and wouldn’t have been a repeatable process. My goal is to hone this process, so I can get as close to real time as possible — based on the level of effort required, I think that the most practical estimate for this is probably a weekly report, but the process is going to need work to even get to that point.
How did I get here? [the geeky stuff] Dexcom reports out two sets of numbers — the meter values that you input to the receiver (calibrating it), and the reported values that show on the screen every five minutes, these two sets of data are reported separately, but in the same worksheet. To add to this, when I updated the software on my Dexcom receiver it archived my file to date and created a new file, so I have to files one from when I started with the Dexcom to the software update, and then one from the software update to present day. What I needed to do was split and clean two data files, and then add together the corresponding parts, from there, I added an additional field identifying each of the data points as either being a “Meter Value” or a “Dexcom Reading” — which then enabled me to join the two tables back together as a single table with the fields of Time, Blood Glucose, and Type. This is the data set that I pulled into TableauPublic to build the visualization below. There were around 65k records, so we have a good bit of time in TableauPublic before we will have to think about filtering the data set down in anyway.
Looking at the same numbers, but cleaning it up and adding some detail to be able to zoom in on parts of the time frame… let the iterations begin…
I start everyday with the best of intentions… and then there are some biscuits, and a few crisps, and I just don’t feel like checking my blood sugar… and then that happens again, and again. I would say “oops” — but let’s be real, no one is making me eat these things, I make a choice each time I eat something, both about what I’m eating and about whether or not I check my bg and/or give insulin for it… in the back of my mind I know that if I give insulin for the amount I’m eating I’m going to rise and then crash, big time… probably over night… and who really wants to be woken up by their CGM, not me. 1) I’ll probably ignore it anyway, I know that’s dangerous, and I’d rather not die — 2) I’d rather sleep in and not be bothered — 3) It’s annoying and I resent the whole thing
So there it is… all in all a very mature reaction /not. and to be honest I really have no inclination to change. I know I’ll have to/will get back on track when I’m home, but I’m also aware that each moment/hour/day I spend high it damaging my body — I know that that might seem extreme, but I treasure my health and I don’t want to deal with the potential long term consequences that are brought on with this type of behaviour.
Ugh. I know better, and I’m doing the opposite anyway. I woke up today feeling like shit, a mild headache and terrible nausea, it felt like a hangover, despite the fact that I haven’t had a drink in almost two years now. And how did I address this nausea… a giant cookie #fail / #win … even my reaction to that statement is telling of my current mindset. I love being here, I’ve been away almost two weeks now, visiting friends and family in the UK, but if I’m going to survive my trip — and be able to establish a behaviour standard for future trips away, I need to get this shit under control.
I know how to defeat this, I need to make the healthy choice the easy choice, drink enough water, get rid of the junk food, just don’t buy it in the first place — look at my CGM record, take in my reality and fast-forward to think about what will happen if I keep up this behaviour.
Dear god (or whatever is out there), please help. Thanks.
I keep thinking that diabetes will just randomly evaporate and not be a part of my life anymore. No longer with me when I wake, walk, talk, work, move, breathe, live. I’m so sick of having to consider it as a factor in every decision I make, every thought has to be followed by “do I have my kit? do I need it? do I really need it? have I got everything that I need? do I need extra snacks? do I have extra snacks? are the things I need close enough that it’s not annoying to go get them? will I be walking much? do I need to turn it down now? or should I wait? why is my sugar doing that? do I need to fix it? will it fix itself? shit, what was I going to go do in the first place?”
so seriously… on the front of random evaporation… where are we with that? close? a year? a month? #seriouslyplease
Yeah… this is the text chain between me and a very supportive friend…
Seriously, god bless her… I am making no sense. taking no advice. barely “hearing” anything. also my stomach still feels like shit.
bonus points if you know where this specific robot s from…
Lately I feel like I have the emotional capacity of a robot. It’s easier to just block everything out… so far it’s been one of those weeks where I’m not even sure my dog loves me… it’s ridiculous. I know objectively that that is not true, just as I objectively know that I have feelings, but it doesn’t feel that way. It feels like a giant ice cube has formed around my heart… radiating cold out to the rest of my body… pulling rank and keeping every sense, every cell in line… with the explicit order not to feel anything. I can’t even let go when I’m on my own. it’s like I’m even hiding from myself. I can feel the heat rise in my chest, behind my eyes, but even if I think about allowing myself to express it, my body suppresses it like an automatic reflex.
the only time I seem to be able to express anything is when my sugars are really out of whack because I seem to lose control a bit… that’s when I want to write, that’s when I feel awake… so do I only have feelings when they are triggered by my blood sugar? If so, that’s not good, on so many levels. Not feeling is a problem. High sugars are a problem. Feeling because of high sugars… not good. a recipe for misbehaviour and disaster.
I just wish everything was okay. Or that I could be sure of it. I just want everything to be okay. to be normal. I know… there’s nothing and no one that is “normal,” but seriously, I am so beyond the range of any concept of the “normal” range — I am absolutely dependent on medication to keep me alive, I have two remotes that control chemicals in my body, in addition to prescriptions and an emotional program for living… fuck that. fuck all of it. I hate my remotes, and I hate that as soon as I’ve gotten used to an omnipod placement I have to move it again… and the scarring from these is not going to be good — way worse than the dexcom, I don’t know if it’s because the cannula is larger, but I can tell when I take them off that the injection site is going to take longer to heal that the dexcom ones do… great… now I can just wait on breaking technology (and the FDA) while getting scarred up all over. Great. fucking fabulous. I’m just so fucking mad at all of this… and this is what happens when I let it out, so in order to move through the day to day I have to just swallow it down and keep it all in. Everything related to any feeling, good or bad, has to stay frozen because I can’t handle the feelings at the top of the list. I know how to fake the funk, how to work a room… if I need to share “feelings” for whatever reason, I keep it light, “my family is crazy, I deal with it by sending them pictures of my dog”… small talk about work and whatever I’m watching on Netflix and Discovery channel… that’s the stuff I can say, the shallow stuff… I can’t talk about anything real. One chink to the very thin armour and I’m going to crack. I’m barely holding my shit together. Frozen helps. Right now it’s the only way.
today I had a lunch meeting. when the food arrived, I was engaged in the conversation and didn’t want to pause to give insulin (and/or answer questions) — even though it would just require one finger stick/test, a little carb-googling and entering numbers into the omnipod PDM… now that I write that out, it seems more reasonable to skip it… that’s a lot of hassle. Anyway, so I skipped giving my insulin at lunch, I gave it right after, but still felt the affects of the high, almost decided to go home for a nap instead of working from a coffee shop… I needed outside circumstances to keep me working… coffee shop it is. Anyway, so I’m sitting here, getting a fair amount of work done, when I’m like… I want a cookie… I can’t banish the thought out of my brain, I carb-google it and it’s not so bad, so I go to buy it, turns out what I thought was a cookie was actually a scone… I don’t know the carb count off hand, I know it’s bad, I order it anyway. I walk back to my table, knowing that I am choosing to do something bad, calorie king says 70g… fuck it. I take my blood and enter it all in… and now I’m feeling sleepy again… funny, “I wonder how that happened?” she says sarcastically… fuck me. And I still have work to do… and I can’t stop thinking about things that I can’t have. It’s driving me crazy. it’s like my mind is on a loop. sometimes what I want and what is good for me is not the same thing… or so they tell me, I guess I can always choose to disobey, I’ll try it this way for a bit… one moment at a time.
I feel like this picture captures my inner monk — part vow of silence, part gangster, lol — Photo by Joel Collins
after meeting with the rep I told know one. I saw two people I knew at the place I met the rep, so I was honest with them. I admitted to my parents and my friend I went to eat with that night, but that was it. and I was not going to tell anyone else. posting on this site was the next person I told. I don’t know why. I guess somehow it felt like if I kept it a secret then no one would ask me any questions and then I could pretend that it wasn’t there. I was embarrassed by it, more so than I was by giving shots — I guess because it was new again, or new to me…? I relaxed a bit and started being upfront when asked about diabetes, or about what was going on with me… since that is the thing that most occupies my thoughts these days.
I went to a friend’s birthday party last night and wouldn’t have felt comfortable in a bathing suit around any other group of people, it’s the first time anyone has seen me with both devices beyond a “yes, this is what it is.” I got a few questions, but they were inquisitive and supportive… “I prefer ironman or the bionic woman” being one of my answers. It was a great way to “rip the bandaid” on being open about this next step in my diabetic journey. Not that I need to tell everyone or be an omnipod poster child, but I have found that I feel better in life and in myself when I am open and honest in all aspects of my life. It might be awkward and painful now, but if I’m honest and address it for what it is now, the stress associated with it will diminish and the changes that I need to make become part of my life, quietly, without worry or difficulty. This is my experience with all other changes in my life. I feel rather zen while writing this, but it is true — when I can move into acceptance, or at least address why I am resistant or resentful, I immediately feel better — it is this honest that has helped me get to this point. now if I can keep that going… maybe I will be able to tell Diabetes to “shove it” from a place of honesty and acceptance.. hmmm, that doesn’t seem to totally fit… haha
Diabetes, you suck. I contributed, but you’ve pushed it over the edge. First, I was texting with a friend last night, so I didn’t get to bed on time (Fail #1), then I forgot to take my night time Rx (Fail #2), I took night time insulin (Fail #3), I dropped all night (Fail #4), I slept terribly because I was all hot from dropping and being low (Fail #5), I woke up feeling tired, sick, and shaky (Fail #6), I wasn’t hungry, but I ate breakfast anyway because I’m supposed to, it made me feel even more nauseous (Fail #6), I got to my doctor’s appointment late (Fail #7), my doctor’s appointment is actually for tomorrow morning (Fail #8), now I’m exhausted, nauseous, sugar is on an aggressive rise, and now it’s time to start working… fml. Fuck Diabetes. I would like to quit diabetes. If anyone knows how I can submit my resignation please let me know, thank you.