It’s hard to believe that you now have 970 posts and over 1400 comments. We sure have been a lot of places since you were born right before we went to India, eh? What will the next eight years bring?

Diabetes Blog Week is technically over, but I still want to write about one of the topics: my dream diabetes device.

I — In the past I’ve written about wanting an application that integrates all my current diabetes paraphernalia, my Carelink account, and my mobile phone iPod. The goal was to have total diabetes awareness by tagging “interesting” events so that I can go back to the historical record the next time that thing occurs. “When I was sick how much extra insulin did I need to give?” “When I ate Indian food, what was an appropriate amount of insulin and how did I deliver it?” “What basal rates and carb amounts worked well for a triathlon?” Ask one of these questions, and see the BG values, bolus wizard details, and CGM traces for all of the events tagged with those keywords. It wouldn’t be a perfect solution to preventing all lows and highs, but it would surely be better than my own faulty memory.

I actually started writing the application and got all of the data into a MacOS application, but I got frustrated that I wasn’t going to be able to easily get the data from my computer onto my mobile device. So, as usual, I set it aside and got distracted by something else. That was a couple years ago. Since then iCloud came along and makes sharing this kind of data between devices much easier. Maybe someday—after I win the PowerBall lottery, perhaps—when I have limitless time and ambition, I will pick it back up. Or (better yet) I’ll become a venture capitalist whose first project is to fund the development of such an app. That way I can travel the world while other people do most of the coding for me. I’ll show up for design reviews to give insightful commentary and gather information for my TED talks.

II — Recently I’ve started working on another diabetes data project. Now that I have a newer Mac, I can run MATLAB again. Yay! It occurred to me, after reading a coworker’s at-work blog about telling stories with MATLAB, that it should be possible to integrate a lot of the disparate sources of data into one application (MATLAB) and try to reconstruct a day with diabetes and try to figure out a partial model for some of the stuff that currently requires a lot of trial and error. It’s not a perfect solution, but it’s a start.

The thing that makes this all possible is the fact that so many of the devices I use every day record and export data. My cycling GPS and Garmin running watch tell when I exercise, for how long, and at what intensity. My CGM records my blood sugar patterns, while my BG meters record the ground truth. My insulin pump tracks my basal insulin usage and all of my bolus wizard details, along with a host of other details. There’s a lot of data there that I can potentially synthesize and display in one view. And, because it’s MATLAB, I can define every last little thing about how I want the information displayed, what details I want to filter out, and what I want to try to highlight or search for.

III — But even with all of this data there are missing parts of the picture. Diabetes is a difficult disease to manage, in large part, because it’s integrated with almost every other part of life. Unfortunately, daily life is messy. There’s a lot of it that just isn’t easily tracked by devices—well, not yet. I’ve toyed with the idea of getting a FitBit device to keep track of some additional things, such as overall activity and sleep, but that still leaves a lot of things untracked, especially food: food that I don’t bolus for, such as glucose tablets, food during exercise, “just in case” snacks, the things that seem too small to worry about, etc. And then there’s swimming, stress, pain, illness, hydration, weight, and so on. I wish there were a way to keep track of all of that. (At least for a few days or a couple weeks while trying to figure out appropriate baselines or when changing my training load. Paying attention to all of that data every day could be a bit overwhelming.)

So I asked one of my bildr/maker-type friends if there were good hardware or software solutions for keeping track of any of this stuff, especially the food-related bits. There are hundred (if not thousands) of nutrition apps, but all of them I’ve seen are much more heavyweight than I want. Don’t make me select something that says which food I ate in order to give me all of the nutrition info or calorie count when all I really want to record is “At 11:25AM (give or take) I ate 15 grams of carbs that I didn’t bolus for.” The best that we could come up with at the time is a small notepad and pen to record stuff before transferring it manually into whatever computerized, MATLAB-based system that holds all of the other diabetes events.

Thinking about it on a bike ride a couple days later, it seems like it should be possible to have a little nanny app that pops up a few times a day asking questions. How is everything going? What time did you wake up this morning? How much sleep did you get? Feeling stressed? Eaten anything you didn’t bolus for in the last day that we haven’t already talked about? Do any swimming or yard work? How active have you been this afternoon? Any pain? Illness? Have you been drinking water?

Just a few judgment-free yes/no questions and easy-to-answer questions involving time and quantity, and voilà! instant context. I could probably make an iOS app to do that in a weekend (if I didn’t mind it looking crappy). But really that’s all of the data that my devices don’t give me now that I want to capture. Oh, and it should have a one-touch switch that turns it off so that I’m not bothered during the 95% of the year that I don’t want to keep track of all that stuff.

IV — As an aside, wouldn’t it be awesome if someday there were a Siri-like interface for diabetes?

“Hey, Siri. Remind what I did those times that I had barbecue at the office and everything went pretty well?”

“You estimated you ate 100 grams of carbs. You delivered ten units of insulin in a dual-wave pattern with two-thirds up-front and the remaining third over an hour. Here’s what your CGM trace looked like for the next six hours.”

“Thanks, Siri. I love you.”

“Hey, let’s keep things professional. I’m not that kind of robot.”

“Sorry, girl.”

“It’s cool.”

V — But all of this “Total Diabetes Awareness” and data fusion and mindfulness/memory apps got me thinking that the ideal diabetes device system is one that wraps all of this up. It automatically keeps track of activity and food and active insulin and BG/CGM values and all of the other emotional intangibles.

But then I thought, keeping track of all that data in order to make better insulin dosing decisions is 20th century thinking. What I really want is a system that automatically regulates BG levels using two hormones, one that lowers blood glucose (via insulin) and one that raises it (via glucagon). Then the system can reach homeostasis all on its own.

Of course, an artificial pancreas that integrates everything together in a closed loop system needs believable inputs. BG meters and (especially) CGM sensors need to be much more accurate so that the system is given the right data to make the right decisions. It’s a bad thing when my CGM says I’m 40 mg/dL (2.2 mmol/L) when I’m really 140 (7.8) or, worse, vice versa. So obviously, an artificial pancreas that’s actually implanted and uses a semi-permeable membrane that lets more insulin seep out when it’s needed is the way to go.

And that’s when I realized the basic truth of diabetes technology: The ultimate diabetes device is a new pancreas.

I was hanging out in the middle of the pack about 85 miles into the North Shore Tour de Cure “gran fondo” feeling a bit out of it. I was hanging on to the rider’s wheel ahead of me, but it felt harder than before, and I could hear the world buzzing around me.

Losing my background noise filter frequently is a sign that my blood sugar is going low. I had been hanging out around 200 most of the ride, but I gave myself a minuscule amount of insulin at the previous rest stop since I hit that magic number where, even on a ride, I feel like I need a little something extra to help my body use the food that I’m giving it. Actually being low seemed unlikely, but I’ve seen my blood sugar move a lot in a short amount of time before. If we weren’t going so fast and riding so close together, I would have checked my BGs, but I worried about popping off the back of the pack and being caught in no-man’s-land. Plus, I didn’t really think I was low.

It was also entirely possible that I was at my limit, with or without diabetes. We had already gone 25+ miles farther than my previous longest ride of the year. I’m a firm believer that if you can ride sixty miles, you can ride 100 miles; it’s just a matter of how fast you can go and how you feel at the end of the day. I could go 100 miles for sure, but how was it going to feel? Early on, I realized today was going to be different than my Tour de Cure century last June, which was a leisurely gabfest and sightseeing jaunt with Scully. Unlike that ride, at the eighth mile of this ride there was a two-mile time trial that showed that the people I was riding with weren’t afraid to throw down. In fact, it felt just like triathlon, except faster and without my tri bike. (I kept thinking, “Well, there’s a drafting violation,” before remembering that it was okay today.) About a half-hour later, when heading out of the first rest stop, I managed to get on to the front of the pack and drag everyone five miles to the start of the timed hill climb. Needless to say, it wasn’t my best effort.

That categorized climb was 55 miles earlier. Since then, we had ridden almost another three hours, averaging just under 20 miles per hour (32 km/h). I spent those three-ish hours watching the rider ahead of me—taking care to stay close (but not too close) to his wheel—and checking the road for hazards and turns, which I pointed out like a good pack rider. During those 55 miles I worked on using just the right amount of energy to stay close to the person ahead of me without overdoing it and needing to move out of their slipstream to slow down or (horror!) touch the brakes and then pushing hard to stay on their wheel when I relaxed too much. Power up; power down; power up; power down. And then throw in a hill to cause a ripple through the pack as we all stood up and seared our quads to keep up with the person driving the pace. [1]

I was struggling a bit, but I didn’t want to be that guy. This was a Tour de Cure—which nominally meant that it was a ride to help people with diabetes—but most of the people in the gran fondo were treating it as just another organized ride. Unlike last year’s ride, there were many fewer Red Riders on the long ride, and most of the people we passed didn’t give the typical “Go, Red Rider!” cheer. No one asked anything about diabetes, and when I asked what people’s connections were to diabetes, the answers were vague and almost apologetic. [2] I was torn between wanting people to understand how difficult diabetes can be sometimes and how much people without diabetes take for granted and not wanting to use diabetes as any kind of excuse for anything unless I’m actually in a hypo-induced stupor. I was determined to be the strongest guy with diabetes on the ride and to challenge any lingering misconceptions about our abilities.

So when we rolled into the last rest stop fifteen miles from the finish, I tested my blood sugar, saw that it had dropped more than 80 mg/dL (4.5 mmol/L), ate four glucose tablets and a PB&J sandwich, and mixed some Skratch mix into my water bottle. I wasn’t hypoglycemic, but I had dropped enough (as I had suspected) to feel it and to need to prevent falling at the same rate for much longer. I put another banana into my back pocket to replace the one that I had bobbled and almost caught before losing it at 30 mph earlier in the ride. I took a quick picture with my camera for posterity and then headed out with my adopted group.

A few miles later I was feeling back to my perky self. All of the work I had put in so far was still dragging on me, but I noticed that the miles seemed to tick down a lot faster than just a bit earlier. We also started passing a whole bunch of Red Riders now that all of the routes were sharing the same road near the finish. One of the guys from the small Blue Cross Blue Shield team rolled along side me.

“Hey, Jeff. How would you like to lead us all in when we cross the finish? I mean you’re a Red Rider, and it just seems right.” I was genuinely touched, and the message rippled through our now much smaller group of about a dozen riders.

I knew that if I was going to lead people in I was going to make sure that I did a pull on the front so that it wasn’t just a ceremonial gesture. The last three miles were great! I put my head down and churned out a consistent 20 mph pace, just slightly faster than our 19 mph (31 km/h) pace for the entire ride. My body felt the best that it had all day. When we were stopped at the intersection just before the finish line waiting on the police officer to stop traffic for us, there were compliments and handshakes all around. I like to think it was because I survived their out-for-blood, keep-up-or-ride-by-yourself club ride, instead of just having a really good pull for a guy with diabetes.

1 — I need to more of these hardcore training rides. I think it would make me a much stronger rider. [back . . .]

2 — There was a whole lot of “My mother-in-law/father/aunt had diabetes.” Always in the past tense. Some of the people I talked to were (admittedly) a bit older, but many were my age or younger. Clearly, there’s a need for much better information about diabetes and how to live with it successfully so that there’s less past-tense and more present-tense. And there’s also a tremendous need for research funding and advocacy so that there are more people living without diabetes. And that, dear readers, is why I was at today’s ride. [back . . .]

But don’t worry. I’ll post about diabetes doodads soon. And the ride of course.

Diabetes Blog Week gets a little freaky this Friday . .  and frankly a little uncomfortable if taken seriously. “If you could switch chronic diseases, which one would you choose to deal with instead of diabetes?”

Comparing chronic illnesses and wishing that you had a different one is a fool’s bet. At worst, you show yourself as failing to understand how difficult another person’s illness is. At best, you still have a chronic illness! You will still need to take medication or be watchful and worry about when your illness will turn more serious.

Instead, I’d rather have the kind of diabetes that some people think I have. No, I don’t mean the diabetes that people believe means I can’t eat delicious things with sugar. Nor do I mean the one that leads people to think there are things in my life I can’t or shouldn’t do. And it’s certainly not the kind of diabetes that somebody’s aunt “who didn’t take care of herself” had before she went blind, lost her feet, became impotent, had a heart attack while on dialysis, and died. (All of those things are no laughing matter, of course, and can happen to anyone, no matter their A1c.)

No, I wish I had the “easy” diabetes. That’s the kind of diabetes where insulin is a cure, where having a pump means that I can do and eat whatever I want without worrying about anything, where using CGM lets me test my blood just once a day, and where “following the rules” puts my A1c instantly into the non-diabetic range. It’s the kind where following a low-carb diet, making out with Halle Berry, or eating cinnamon makes your symptoms completely disappear. It’s the kind of diabetes where simply preparing a few recipes from a “diabetic cookbook” is enough to ensure perfect glycemic control. It’s the same kind that is already cured in mice, and the same cure would be ready for me in less than five years. This diabetes uses technology and medication which are so inexpensive, easy-to-use, and reliable that the artificial pancreas is a flawless cure. It the kind of diabetes where islet cells are readily available for transplantation, anti-rejection drugs are foolproof, and medical professionals and drug companies provide everything pro-bono.

Obviously, this “diabetes” doesn’t exist at all, but, believe it or not, I’ve actually heard or read all of these things before. It sure would be nice if any of these were true, though. Some of them may eventually come to pass; I really do hope so. Others—like making out with an Oscar winner—probably will be just as mythical as any kind of “easy diabetes.”

So, I’ll be keeping this chronic illness instead of trading it for another. Besides, I have plenty of work left yet to figure out this one.

p.s. — Just in case you missed it, when talking about a mythical, nonexistent “easy diabetes,” I certainly don’t mean type-2 diabetes. That variety is just as hard in its own way as any other chronic illness. Don’t forget what I said in the first paragraph.

Today’s Diabetes Blog Week posts encourage us to “share the greatest accomplishment you’ve made in terms of dealing with your (or your loved one’s) diabetes.”

I won’t lie, my biggest accomplishment with diabetes is still a work in progress. It’s taken a long time to get where I am with being comfortable with insulin, and I could be even more comfortable with seeing a bolus wizard suggestion and just saying, “Okay. I can handle that amount of insulin without worrying.” Nevertheless, where I am now is much better than where I was a year ago . . . or even six months ago.

The results of “doing what I’m supposed to do” are encouraging. My A1c is the lowest I’ve had in quite a while, and I’m seeing fewer big spikes than in the past. I’m snacking less at times when I really don’t want to. Cycling with “normal” BGs is happening more often. Even eating Indian food is easier.

I am, however, having more lows than in the past and needing more (legit) snacks to prevent them, so I have some fine-tuning left to do. However, unlike in the past, I’m not treating those lows as a frustrating justification to do whatever. The changes I need to make are all do-able (By the way, I wasn’t simply flailing in the past; I was actually trying to make things better, but it was just a little hard to do that when I was adding so many other variables into the mix.)

Basically, this accomplishment is all about gaining the confidence I had needed to empower myself to do “scary” things (like taking insulin) and to enable doing more exciting things (like getting CGM no-hitters and doing half-Ironman triathlons).

Memories are the focus of today’s Diabetes Blog Week posts.

Until recently, my most memorable day with diabetes would have been the day of my diagnosis 13+ years ago. It was such a life-changing event—cleanly separating my memories into before and after—that it’s going to be hard to ever truly forget much of it. But recently more and more exciting/interesting/unusual things come to mind first when I think about diabetes and my life. On the bizarre side, I called Minimed from a pay-phone in the middle of the outback in Australia when my pump died. Later on that month-long trip, Lisa and I had a fabulous time snorkeling (sans pump), and I barely worried about diabetes at all.

Perhaps my most memorable diabetes event (at least for now) is last year’s JDRF Ride to Cure Diabetes in Death Valley. Diabetes was everywhere on this ride (including some of my favorite people with diabetes) and yet my diabetes was remarkably well behaved. The more time that passes from this event, the more special it becomes. I mean, I rode 105 miles in the desert Death Valley! It was hot and difficult and so meaningful. It’s something I couldn’t have done on my own, and all of the help from the volunteers and donors meant so much to me. That particular ride is not necessarily something I’ll ever do again, but the memory changes how I think about diabetes and what I can do with it.

Today, the second day of Diabetes Blog Week, prompts us to think about petitions for diabetes. (For some context on why this is relevant to the community, read the DiabetesMine article.) I’m not really a big fan of petitions, so I’m going to do one of the wildcard topics: “What is the ideal diabetes service animal?”

I’m going to have to go all-in here and say, “Cat.”

Let’s look at all of the reasons:

• Cats are furry . . . and warm . . . and affectionate. It’s hard to do better than a warm, furry, affectionate critter that wants to be around you.
• Cats—like diabetes—interrupt what you’re doing to remind you of their existence. This presents a very convenient reminder to test . . . especially at 3:30 in the morning when they pounce on your feet or walk all over your face.
• They don’t really care what the hell you do as long as you feed them. They give you that look which says, “Hey. That thing looks bolus-worthy. I’m not going to judge you if you eat it.” Or maybe it’s a look of disapproval. Or ennui. It could definitely be ennui. Cats are an emotional Rorschach test.
• With their constant desire for food, cats provide a reminder to eat that food you pre-bolused for.
• Cats don’t bark or need baths. They’re pretty self-sufficient.
• Cats are easily distracted by empty boxes. Need a diabetes break? Just set out an empty box, and voilà!

Well, that’s pretty much it.

It’s here! Diabetes Blog Week has arrived again, and it’s time to let someone else help me figure out what to write about here. Today, we pretend that our health care providers are reading what we write. What would we want them to know (or not know) about our lives with diabetes?

Hey there, Awesome Endo and Awesome CDEs! I think y’all are pretty great. You have a really good sense of what people with diabetes are going through, and I believe you really treat this as a calling to help make our lives better and not just a job. I’ve shared links with you in the past, so there’s an outside chance that you are, in fact, actually reading this right now. But you’re all very busy people with lives outside of the office, so I kinda doubt that you actually are. Anyway.

What I hope you do see is also what kinda wish you wouldn’t see: People with diabetes are constantly doing things and making choices that are contrary to what we talked about in your office. We present you data that often doesn’t have all of the context. “What happened here?” Well, it’s a long complicated story that started earlier in the day . . . or the day before . . . or all of those years ago when I was on NPH. But really, that’s a lot more detail that I suspect you really want—or that I can remember—so I’m going to make an educated guess. (This probably isn’t surprising to you.) So many of the choices we make are “messy” and nothing like the ones that we talk about in the office.

Neither of us is doing anything “wrong”—whether it’s making suggestions based on limited data or living in a way that leads to such choices—but it makes it hard to feel completely honest during the conversations we have where we’re trying to make things better. This is part of the reason why I’m glad that you look the other way at the occasional highs and lows in my logbook. Don’t get me wrong; I’m doing my best to make the right decisions, gather the right data, and do the things we talked about. I’m just really glad that you don’t see the imperfections as failures, because I do enough of that on my own. (Although, I’m getting much better at being okay with those misses.

So, thanks for reading and for helping me be the best human pancreas I can be.

Oh! And I wish I could always show you CGM reports like the first picture below; but, really, they’re more often like the second one.

If you are a health care provider, be sure to read Céline’s post today.