life with type 1 diabetes
The tool I have been using to create the visualizations of my numbers is called Tableau — as I was looking through Tableau Viz of the Day Gallery, I found this great viz on the Prevalence of Diabetes in adults (20-79 yo) by Ramon Martinez. Ramon publishes a blog focused on analyzing health data at the population level — the post accompanying this viz has some additional insight on the data presented.
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.
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.
Getting your Dexcom numbers off of your device and into a format that allows you to see what’s really going on. Let’s be real… the Dexcom reporting sucks. (hence my search for alternatives)
The idea of Diasense is great. I love that I can pull in my UP24 data alongside my Dexcom and OmniPod Data, but the reports are horrendous.
Let me add a caveat to explain that I am 100% biased against bad reporting because data is what I do for work… in fact this is also what I do for fun. I understand that this is not the norm… but I also know the power of being able to access your data, not only to see the literal picture of what is happening, but also being able to drill down into the data to find insights that are not accessible by just looking at my Dexcom screen each day.
Here’s the process I’ve decided to follow — I’m going to hack the data of my individual devices (Dexcom, OmniPod, UP24), then I am going to find the best way to integrate them into a single data set and use any and all tools at my disposal to process and visualize that data. That is phase 1, phase 2 is to figure out how to do it better… did I also mention that I’m an Industrial and Systems Engineer?… Process Improvement is my jam. Looking at the process that I followed in Phase 1, I will determine how to make it a more efficient repeatable process, and what interval I will be able to feasibly update the reporting. Then, as all good process engineers would agree… I will do it again… learn from the previous process and try to make it even better.
In the meanwhile, I am also tracking the status of
as they all look like promising technologies.
I am also looking at possible integration of the following tools into my initial patchwork system.
Sugar Sync
Calorie King
Diasense
this is theoretically not all that complicated… I have numbers, I want to see them… why is this so fucking difficult…
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…
And just like that my worlds collide. Data. Diabetes. Boom.
It’s all in the trend line. Further insights… and feelings, TBD.
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…
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.
It is very different being a diabetic v. caring for a diabetic. Actually, I guess I’m not really qualified to say that, as I can only speak as a diabetic, but what I can tell you is that it irritates the hell out of me when I read stuff written by parents that waxes on about how hard it is to deal with their kid’s diabetes. fuck you. I’m not a parent. I know there are things that I don’t understand about that relationship, responsibility, position, but I can tell you that as a diabetic, i.e. the one who will actually die if I fuck something up, I have a really hard time feeling sympathy for an onlooker. I know that is harsh. I know that there are people in my life who have worried about me, had to watch me go through things that suck, watch me behave in ways that might not necessarily be the “best for me,” wonder if I’m going to be okay — and if I wasn’t open to hearing their opinion, stand on the sideline and wait for me to figure it out myself, or die trying. I realize that all of this might sound a tad dramatic, but that’s how I feel right now. The other part of this, which it’s taken me longer to get to, is that if I’m honest, I’m jealous of diabetics that were diagnosed when they still had a support system at home. I feel so alone sometimes. Even though I know that I had quite enough arguments with my parents growing up without another thing to fight over, let alone one with such gravity, but I can’t help but think, then I wouldn’t be alone. although… then I don’t have to take direction from anyone either… scratch parents, thank god I wasn’t married, that sounds worse than being diagnosed as a kid — at least resenting your parents is part of the deal, I can’t imagine going through that with a partner. Even the small taste of that I had was horrible — having to worry about another person’s reaction to what you’re already dealing with is a pain in the ass, it’s hard enough for me to deal with me. but then I guess that’s the catch, maybe I am better off on my own — is it possible to care for a diabetic without meddling in their diabetic life/choices/status? if you care, then you want to know, but then where does that leave the diabetic? I don’t need or want to have to report my “status,” even when asked in passing, especially by my parents, I find it super irritating (I know this reaction is not rational or polite). I know that people want to care, or that they do care, but rather than care, I wish they would just try to understand rather than try to help. Unless you can magically fix my pancreas you can’t help me… honestly, even my endocrinologist can’t really help me, all this shit is just a massive guessing game, so could you just be there? Just stay still, and love me. that’s all I need, and that’s all I ask.
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