life with type 1 diabetes

Tag: Hope

Best Explanation/Summary of Type 1

This is by far the best, simple concise explanation of type 1 I have found… thank you @HelmsleyT1D

Type 1 diabetes (T1D) is a life-altering autoimmune disease that afflicts nearly two million people in the U.S. alone. There currently is no cure and the number of annual diagnoses is on the rise. It is perhaps the only disease in which patients are required to monitor their condition constantly and make their own dosing decisions with a drug that, if improperly administered, can kill them. It is a dangerous and relentless 24/7 grind, and research shows that the vast number of people with T1D are failing to properly and safely manage their disease.

With T1D, the body attacks its own insulin-producing cells in the pancreas. Insulin is a hormone that enables the body to metabolize and use glucose. Elevated glucose levels can be immediately life-threatening in severe cases, but more commonly they can result in a range of serious long-term health complications, including blindness, amputations, heart disease and kidney disease. T1D is managed today by a rigorous regimen of monitoring glucose levels – either by pricking one’s skin multiple times per day or wearing a subcutaneous continuous glucose monitor – and then administering insulin via injection or an insulin pump. None of this process is automated currently, which means end users (or their caregivers) must play the role of a pancreas.

 

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

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.

Drop the rock.

DroptherockI was having trouble concentrating today, after hours of fighting to stay concentrated, then falling into tv, fading into over thinking, and then all of a sudden I knew I was on an edge, not a relapse edge, but an edge all the same — I text a sober friend, and another friend, and my sponsor… anyway, the result of all this reaching out for help (the thought of which still makes me cringe) was a conversation with my sponsor which made me feel a lot better — she said to me that in speaking with her that I had “dropped the rock.” I’m not sure if this is what she meant by that, but what came to mind for me was running underwater and needing to drop the rock in order to surface for air… this was by far the coolest picture I was able to find of this… I see myself as the swimmer on the left. This is where I stop trying to separate parts of my life — I am emotionally upset, I still check my blood sugar, I don’t assume it’s one thing or the other, I just have to treat the whole Sophie, as a whole, in whatever manner is required at that moment. And at this moment while I need to change my pod, and do a bunch of other things I’m sure… all I can think about is how violated I felt when my doctor took my PDM away and made changes to it without explaining or including me in the decisions. I accept that my reaction to this is my own, but it does not make it any less valid. It’s been over a week and I can still feel that empty exposed feeling of sitting in that doctor’s office being told off, and then they didn’t even know how to make the changes properly and had to then hand my PDM off to yet another person to adjust/correct/fix whatever it was they were doing. I don’t even remember what she was saying or what they did. All I know is that it doesn’t seem to have done much, the best thing that has happened for my diabetes since then has been going back to crossfit — while a bit scary, it seemed to have a great effect on my numbers for the rest of the day — I will need to remember to eat more, but my post-workout numbers were encouraging. Ending on a high note… planning on working out again tomorrow… TBD