From Wired Magazine’s article on hacking type 1:
“Diabetes was no longer a death sentence, but to this day it still means a life shackled by regular blood-sugar checks, insulin treatment by injection or pump, and the constant threat of overdosing on the very medication that’s keeping you alive.” — this part of the article I identified with, it is a very clear and raw explanation of my reality… but this next part I was not ready for…
“Indeed, one in 20 people with type 1 die from severe low blood sugar, not the high blood sugar that was the problem in the first place. It’s a delicate balance.” — wtf. I’m too shocked even to fact check this… I mean I’ve been scared, but maybe I haven’t been scared enough…
Talking about monitoring his son’s BG… “One night, it was 36. Any lower and Evan could have fallen into a coma. He could have died.” — it’s like I haven’t really heard anything anyone has been saying for the last eighteen months. I’ve been trying to carry on as usual… I went on a fucking business trip three days after being diagnosed… Before they had even confirmed a type 1 diagnosis… I should not have been traveling alone, wtf. How many times have I hit lows in the thirties and occasionally even in the twenties while I’ve been alone in my apartment, honestly I couldn’t even tell you… too many to count… fuck, I can’t believe I’m alive. I’m trying to be grateful and have faith, to help pull myself out of fear… But right now it’s not working.
It’s as if my life before never existed. Like I was reborn the day of my diabetes diagnosis — a whole new life with this terrible new addition. It feels like the me before died. I’m so afraid of everything, but every moment, every thought, action, and word is covered in the rubber coating that is the glib “I’ve got this, it is what it is, and I’m doing my best” line. Maybe if I say it enough I’ll believe it. I hear myself sometimes when I’m talking to other people, sometimes they’ll even comment on how well I’m dealing with this and occasionally my real voice in my head gets through and calls “bullshit” — I hear the words coming out of my mouth and in my head I know that it’s all a show…that in reality I’m barely holding my shit together, mostly just through complete and utter fucking denial. And if I’m totally honest, somewhere deep down, I know that that denial could kill me, but that’s a gamble I choose over living in fear every day… I also know this is the wrong choice, but the other is more than I can bare. So here I am in total denial with bursts of awareness that this far have resulted in no action. It occurs to me that I should mention that I am doing the mechanical things, I take my blood sugar, I bolus for meals, I sort of try to eat right, except when I don’t feel like it… I’m not entirely non-compliant, but I am not giving myself my best chance at a full and complication free life, I’m on the “just survive” track, I want to be on the “thrive” track, but I haven’t found a way there yet. Playing with technology solutions has helped, but I still manage to separate the project from myself… I have my numbers in a few programs, but I am yet to take the next step to really analyze them… I know this, fuck, this is what I have done professionally… Data is no use without analysis, but I don’t want to see my analysis… I don’t want anything less than an A+ and I know that that is not what I’m going to get from my data… I’m think that I’m going to see “you are a fucking moron and you are setting yourself up to lose both your legs by the time you’re 35 — oh yeah, and there isn’t any pattern so there is no clear action you can take to try to fix this, so have fun continuing to fuck everything up” — who would want to do any work to see that message, clearly not me…
The thought that keeps coming to mind is that I can’t do this alone… I need to accept help, I have asked for help, that’s a big deal for me, but accepting it is a whole other ball game…
so the other day I spiked right after breakfast, I had just been to the doctor and I thought “what the hell, I thought the adjustments were supposed to fix this…” pause and rewind for a hot minute… I failed to take into consideration that the previous night at 1am my OmniPod had expired-expired (meaning passed the additional 8 hours it gives you to change it)… did I get up to change it? no. did I think ahead and change it before I went to bed? no. I thought about it and then I was already warm and comfortable and didn’t want to strip down to have to apply/remove pods, I just wanted to go to bed… so first I get woken up with a low alarm, which I ignore, then I get woken up with the pod alarm (which is way worse than the dexcom… ear piercingly loud), only to silence it and go back to sleep, to be woken up and then ignore the dexcom at least once more… so basically, all this technology I wear does not stand up to an idiot who refuses to use it properly… and when I spike after breakfast… maybe it has to do with me not having insulin in my system for the previous 7 hours… just maybe, you know? who knows? that doesn’t sound reasonable? or like science (#sarcasm)… so the answer is… not rocket science… change my pods on time, listen to my dexcom, and only expect good results if I’m putting in good effort… new page, new day, new chance to get it right… one minute, one moment at a time
Full Night Scout Rig
Full Night Scout Rig and online Mongo database through azure site
So I got the new phone (samsung galaxy 3)… and it worked. So excited. Like I said before, I won’t necessarily be using this all the time, but it was cool to see how it worked — and if I were a parent rather than the type 1, I’m sure I would be more keen to use it everyday. The next project I’m looking at is the xdrip (formerly DexDrip) that was — you can find an intro here. The xDrip is a project put together by Stephen Black () that is so cool — find the git info here — basically taking NightScout and getting rid of the cable, Dexcom G4 to android without dexcom share — and then on top of that there is NightWatch that takes the information from xDrip, NightScout, or DexShare, and transmits to an android wear device.
I know that I will have this Dex-to-wrist capability once I get my new DexShare receiver and Apple Watch (both pending arrival), but until they arrive, and also because I think it will be fun to see how it works, I will be starting on this project.
I fell like I have just opened my eyes to trying to live a better life instead of just knowing there is a way and being stuck in fear that nothing will work and I’ll still be stuck where I am… if I don’t try I’ll still be here anyway, at least if I do try I get to keep working on really cool projects… next up, wireless xDrip bridge…
my numbers have been shit, I know this, also I was traveling which rained crap all over my routine… nevertheless I am determined to keep the travel in my routine, so I’m adjusting my diabetes around my life and not the other way around. That being said… my numbers really were shit and I did really say “fuck it” a couple times… I mean I was 300+ or under 70 pretty much the whole time I was in NYC, in Denver I mistook a sugar drop as altitude adjustment and very nearly passed out (40)… there were some learning opportunities… on the whole it was an amazing trip, a testament to the fact that I can be away if and when I need to be… that it’s okay to ask for help, and there are creative solutions for when living on my own is sub-optimal, other than hiring a nanny for myself… go me! But really my numbers are shit, so I’m getting back on that now… back to paleo light… and “remember to eat” alarms, if that’s what it takes, then there it is… today is a positive day, there was a lot of swearing about this yesterday, my lap time to sanity is getting shorter — big improvement, xo
Creating dashboards to answer questions — my question is how am I doing now, as opposed to then? and I want to be able to change both of those time frames… comparing this week to last year, this week to last week, this month to last month, to the last three months… and so I created this dashboard. Above is just an image, I’ve started using a bit more technical solutions, so I’m going to be posting image files for a bit until I get a better process in place to use the publicly available/postable versions again.
[Data Dork Stuff] I figured out that the export file I was creating was cutting off at 65,536… does that number ring a bell? Yup, that’s right — the export file was .xls and not .xlsx — I can’t believe that I missed that #dorkfail — so this explained why my data was cutting off in December, in order to resolve this issue I had to export the data from the data blending tool into a Tableau Extract rather than and Excel file, since .xlsx isn’t an export option (#softwarefail #upgraderequest). Building visualizations from a Tableau extract requires using Tableau Desktop, rather than Tableau Public — like I said, I’m working on finding a way back onto public with this data, so that the dynamic versions can be shared here… and elsewhere without the need to use the desktop software. [Other tools] Looking at bringing together data from my OmniPod and my Dexcom — I used Diasense to get a sense (womp womp) for what I’m bringing together. I love their idea, and the tool — but I hate the interface. Okay, hate is a strong word (and I did just say I love the tool <3), but I love data, and I know that it can be displayed in a way that not only looks better, but is more conducive to helping diabetics understand their own bodies and support actionable decisions in their/my daily life. Next Steps… OmniPod data…
In other news, I’m really struggling staying on a diabetic diet — I eat breakfast, I snack smart, I get all the way to the evening and then I get a case of the fuck-its, except while still hearing reason in my head… it’s maddening. Hoping look at all this data will help me see what I need to see clearly… and help me to make the right decisions, or at least the right next step.
So I knew I was having trouble with my sugars, I figured my dexcom read out wouldn’t be great, but I wasn’t prepared for this… my A1c went from 6.9 to 8.0 over 4 months. Now, relatively I guess it’s not terrible, but my doctor’s reaction was the thing that blew me away… you would have thought my A1c had doubled, and she’s making me come into see another PA (not my normal one) next month… so every month, instead of every three… I objectively accept that this makes sense, my A1c jumped so they want to keep a closer eye on me… but I’m not pleased. I’m not pleased with myself, with being monitored more closely, with being treated as a petulant child, with acting like a petulant child, with feeling like an idiot, with feeling exposed, and alone. Objectively, I can see this for what it is, I was away from home, my numbers haven’t been great, my doctor is on my side, she’s there to help me — but it doesn’t feel like that, I don’t want to be told what to do. Coming out of that appointment I resolved to do better, I don’t want to be told off again — I’m a fucking adult, but now away from home once more, I just had half a bagel… I know it’s not terrible, but I didn’t really want it, I was just working in the kitchen and my sister had brought them in from NYC, I mean they are good bagels, but I wasn’t even really hungry, they were just there and that’s 40-ish carbs that I didn’t need, didn’t really want, and now will be paying for the next couple hours, if not longer than that. And guess what’s for dinner, fucking pizza… self-control at night, I think not. This blows, I want to go back to LA, at least when I’m home I control the food that is in my apt. Oh yeah, did I mention my weakness for christmas cookies? #fml
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.
Do you ever feel like this is what your body is saying to you?
I haven’t figured this out yet, but I’m trying. Sometimes I’m really depressed and emotional about this and then other times I’m completely well adjusted about it and am looking to make a plan to move forward. I’m not sure how to keep myself on track or even if I want to. I know I want to feel better, I know from an aesthetics point of view I’d like to drop some weight, lower my body fat %, but really I just want to feel better. I want to have the energy I feel like I am supposed to have (there’s that pesky “supposed to” again…). Everything seems to set me back — the last couple days I’ve been sleeping 8-9 hours and waking up still exhausted. I’m trying to listen to my body, I listen and then I yell at it for not cooperating and doing what I need it to do. I need to meet myself where I’m at… so many things that I know logically, that I need to apply emotionally. I suppose that is the dilemma… now what?! fuck you diabetes. and the rest of the shit too. it feels like everytime I think I might have a handle on things, something else goes wrong… when is this shit supposed to get easier. ugh. I just have to remember to enjoy the time in between these times. the sunset — everyday, over the water — being able to get to the beach any time I want… people vacation where I live for god’s sake. yes. positive. I’m going to end on that. xo
I have so many things for which to be grateful. I have nothing to be upset about. Yet I can’t shake the “but.” A friend asked me how it was going with the diabetes… and it was like my world re-imploded right then. If she had asked just how I was doing ,without the diabetic reference, I would have enthusiastically told her about starting to coach lacrosse and the amazing camping trip I went on last weekend, how work is boring, but good, and how Casey is doing well, friends are good and how life is generally amazing… but diabetes blows. there’s no way around it.
There is a frozen part of me inside — I don’t feel anything in reference to diabetes. If I do start to feel something it is quickly stuffed down and refrozen. I haven’t really talked about it, or written here because I don’t really want to address it. I want everything to be okay and my “easy” way to deal with it is to not deal with it, just ignore it, pretend that it’s not there, or that it doesn’t bother me.
I don’t know what else to say here. Usually I have strong feelings when I write, but recently I have been apathetic at best. actively avoiding tapping into feelings for fear of feeling them. that’s not going to hold out in the long-term. it feels like my brain is filled with the tv-snow… from back when that was a thing