Dear Diabetes, you suck.

a front end developer who also happens to have type 1 diabetes

Tag: FuckDiabetes (page 1 of 7)

A Large Dose of Reality

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.

reborn.

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…

little wins

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

A shitty doctor’s appointment… as expected

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

mystery and danger?

meh, not so much…. Mystery and Danger of Type 1 Diabetes, an NYT article found here

so far as I understand the article it breaks down to

stress > destabilization of immune system > Type 1 diabetes

while I agree with the premise, it’s basically republishing of really simple information — Type 1 is an autoimmune disease, it is different than Type 2 and it’s annoying to have to explain the difference to everyone who’s grandmother/uncle/sister had diabetes and was able to get rid of it by working out more, or still has it because they exist off of mountain dew and cheetos… no, I’m not bitter or angry and all… working through it… anyway, while nice for Type 1 and the difference between Type 1 and Type 2 to get some press, it’s not exactly ground breaking, or all that interesting if you have a basic understanding of autoimmune disorders.

back on the horse… a new horse

so here’s the deal… I feel better when I do the shit that I know I should be doing (go figure)… get enough sleep, wake up at the same time, eat at the same times and on a regular schedule… walk in the am… and like magic my body needs less insulin, I feel better… and then I stop jacking up on caffeine and my anxiety totally levels out… I know it’s rocket science-y level shit. But here’s the thing, sometimes I still don’t do this stuff… I’m getting better. I’ve started a nutrition program through a friend and my sugars have become stable… like stupid ridiculous stable. I’ve upped my protein level, taken gluten out (again)… and I feel so much better, it’s like everything in my body is moving again. I’ve been walking in the morning too… that has made a big difference in the rest of my day, both with my sugars and with my mood, outlook… a lot of the time I walk down to the beach, I am always insight of the water, something to be grateful for — so many things to be grateful for… like being in a grateful mood right now, so next time I’m in a shit mood I can look back at this and remember that shit moods always end.

Yesterday I had to eat a bed time snack… I resent having to eat at night because it doesn’t match up with my health/fitness goals… but I was a bit low (80), too low to go to sleep without an assured dexcom wakeup 2 hours later… so I ate a rice cake with almond butter… and then another one, and then I ate almond butter out of the jar… because I triggered the hunger monster… and because deep down (sometimes not so deep down at all) I am SUPER resentful at Diabetes. Why should I have to eat when I don’t want to — it sucks. This morning I woke up in the 200s, a carb “hangover” if you will…I had two choices, I could say fuck it, skip breakfast like I prefer to, skip my walk because it’s “inconvenient” today, and sit right down to “work”… or I could do what I know works… go for a walk, down a protein shake, and start over today, at that moment… so that’s what I did… 12-ish hours later I’m back in the 140s and dropping down a bit… still fighting the fishtail effect from being so high… I should test and eat… so I think I will. I’m choosing me, my health, and trying to get out of my own way in the process. Life is good, the guidance is there… now I just have to put one foot in front of the other… xo

and the science project continues…

DualBloodSugarOverTime

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.

Diabetic Dashboard

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.

exposed and paralyzed

emptychair

I’ve written about this amidst rants over the past week or so, but I wanted to address it clearly because I feel that it’s worth the time. When I went to the doctor, she took my PDM, and with very little, hurried explanation, she messed with the settings and then handed it back to me and walked out — this is what happened from my perspective, objectively I know that this is probably not exactly what went down. As soon as she took my PDM, something about the way she took it triggered something in me, and I went into a fog, all I knew was that she had something that was mine and she was messing with it, and I couldn’t or didn’t do anything to stop her. I felt exposed, but paralyzed in the chair, like I was observing the scene standing behind my chair, rather than being there myself. I could have spoken up, asked questions, asked for my PDM back, asked to be shown what she was changing or doing, and why — I am usually a proactive patient, coming prepared with questions, participating my own care. This time I was apathetic and shutdown, I was pissed off when she wanted me to come in earlier than usual, irritated to be judged solely on my numbers without being given the chance to explain, or asked if there was anything else going on — just the assumption of non-compliance, I was insulted. I didn’t feel like her assumptions warranted polite reply — instead, I stayed as I was, quiet, still, in my chair. Not asking any questions, no protests, just waiting for her to leave. and she did leave, and then I was just there, wondering what had just happened, what I was supposed to do — she said something about following up with the nurses to make appointments, like hell was I going to do that. A better voice in my head told me that I probably should actually do that, but then, I know what I’m supposed to do in a lot of situations, and that definitely doesn’t mean that it necessarily happens…

how did I get here?

love-actually-bill-nighy-holiday-gifs-and-movies-shk

I’m 27. I’m sober. on psych meds. on insulin… oh yeah, because I’m diabetic. living in Hermosa Beach, working out of my apt for the most part. some people believe I’m smart and/or competent. both could be debated depending on the day. that imposter syndrome thing… it’s real, sometimes I even shock myself when I know what I’m doing. how fucked up is that? how did I get here? more like where the fuck am I? where am I going? that’s an even more outlandish question. who the fuck knows. do I care? I must if I’m writing this. this thought keeps popping up — who is reading this? do I need to be concerned about this? everything I put out here could definitely be used to question my sanity… I mean, fuck, I question my own sanity on here… I questioned it about two sentences back. I am one person, true, there is no separating the sobriety from the diabetes, from any other aspect of my life. Maybe I could be more polite about things, but let’s be real that’s not authentic to me either… haha. authentic, there’s a loaded word, blatantly misused by so many — if you have to state it over and over, did you ever really have it to begin with? anyway, I’ve never been one to mince words, so I guess why would I start here — the place I started writing just for the purpose of not having to filter myself. not filtering while also expressing those thoughts in open forum for the rest of the world to read, interesting concept. I guess I didn’t give that contradiction all that much thought before I started. too late to stop now. and let’s be real it feels good to get this off my chest, dropping the rock as my sponsor told me. somehow this is different than just writing in my journal, or typing in an empty document — I hope someone reads this and for whatever reason it causes them to pause, even if they just laugh at me because they think I’m ridiculous, it it could help someone who feels some of the same things I feel that would be great too, but let’s be real I am a bit ridiculous, so at least if someone gets a laugh out of it, I guess it’s not all for naught. who the fuck knows.

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