Wednesday, November 28, 2012

Joslin Blog Project: Moving Forward.

This post wraps up my part in Joslin Diabetes Center's Blog Project, which I participated in alongside a handful of other dedicated and passionate diabetes advocates during Diabetes Awareness Month. We each wrote four posts (you can find my first three here, here, and here) that detail our personal journey with diabetes, in the hopes that we could raise $5,000 as a team for the Joslin High Hopes Fund. It's not too late to donate, and any amount helps!

Our prompt for the final week is: What tech/management tools/delivery systems have helped you live more normally? How could these things be better?

Much like Batman and his utility belt, I carry and/or wear devices and gadgets that make my job - the job of living well with type 1 diabetes - less difficult. (I hesitate to say "easier", because it remains a fact that exactly none of it is easy, and won't be until technology can do the thinking for us. And even then... okay, I'm stopping this tangent here. It's a whole seperate blog post.)

My trifecta of necessary evils - glucose meter, insulin pump, and continuous glucose monitor - allow me, when used optimally, the information and flexbility to live as "normally" as anyone with diabetes can.

The pump, when programmed correctly for that exact moment in time, gives me the freedom to do things like eat Mexican food (love you, temp basal + extended bolus) and sleep in (love you even more, sleep) on the weekends. It does some of the work that my pancreas won't.

The CGM looks out for me most of the time, alerting me to rises, falls, and out-of-range readings. But more than that, it gives me some degree of confidence. Confidence to exercise, to try new foods, to not eat at all, to sleep (perchance to dream?), to live with a smaller amount of fear and worry. If I had to pick only one piece of tech to help me with diabetes management, this is it.

Glucose meters give me valuable information, too - and some even provide that information in ways that are comfortable and convenient for me - even fun, sometimes. They help me make dosing decisions, food decisions, and mood decisions. (High? I'm grumpy. Low? I'm confused. Just right? I'm Goldilocks.)

But "how could these things be better"? Hoooo, boy. This one's a doozy.

Gadgets, apps, and everything else under the "tech stuff" category is great, and something I'm grateful for - it's more than someone like my grandfather could have ever hoped for, I think - but it's still flawed. It still leaves an enormous cognitive burden on the patient - not just decision-making, memory, and judgment, but also the emotional repercussions of all those. What would be abso-freaking-lutely lovely would be technology that carries more of that burden for me. I'm talking some serious science here - I want an artificial pancreas. I want a Bigi. I want a system that forces diabetes to take care of its stupid self, so that I can take care of me.

And if I can't have that (yet), I want better interoperability, for the love. Nearly everything I use is an island. Does my CGM make recommendations to my pump? Nope. Does the iBGStar app integrate with the GoMeals app? Nope. Can I use one charging and data transfer cable for all of my devices? HA! With the exception of the few bits of data that can ping between my pump and the meter it rode in on came with - that I never use, because it's ugly and clunky and ugh don't even get me started - nothing talks to anything else. Correction: they all talk to me, and no one/thing else. Not good enough. It's like trying to conduct an orchestra that I can't hear. I want auto-tune.

What I need is more, so that I can have the luxury of less.

3 comments:

  1. I love your posts. Your humor is grand, and your frustrations are right up my alley! When you said "tool belt" I immediately thought of my bra. :) It holds my pump AND CGMS at times. What would I do if I were a man? LOL

    I'm lucky - I'm in trials for the artificial pancreas. They ARE working on getting the pump and CGMS to talk to each other. It's pretty cool - and looks to come on an Android phone platform!

    Cheers. And thanks for the great blog.

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  2. I've said it before, but I feel SO connected to the world during my day.... until I my day bumps into a diabetes device. Then everything stops and we go 20 years into the past.

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  3. Interoperability was one of the main topics of the Diabetes Mine Innovation Summit. One of the main presenters on the topic explained how in other fields it took one company to do it and the rest were forced to follow or be left behind (out of business). We just need one company to step out there and give us what we need and it will become the standard for the rest.

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