Whoopsie

I’m too smart for my own good.

I like to figure out how things work. I (humorously) call myself a “reverse engineer”. And I’m very, very good at debugging, that is, tracking down elusive problems in computer code.

Unfortunately, this makes me overconfident when it comes to diabetes. For one thing, computer programs are predictable. If you do the same thing twice, you get the same result (roughly speaking). If you find a problem, you fix it. And it stays fixed.

Mathematics was one of my majors at Uni, so I can kick the arse of graphs and probabilities. Although, like a lot of highly technical thinkers, I have a distinct lack of common sense.

This all makes me an idiot when it comes to diabetes.

Not working

I have a confession. Since going back on Afrezza a week ago, things haven’t been at all consistent. Yes, it kicks in faster than Chuck Norris, but where my sugar ends up several hours down the track wasn’t consistent. I considered plenty of reasons this might be the case, including an adjustment phase, learning how to dose again, changing basal needs, etc.

In the meantime, I went to a diabetes expo telling anyone who would listen how awesome Afrezza was. The morning of that day my sugars were sweeet (pardon the pun) but in the evening things didn’t work out so well, nor the next morning, and I was left with a sinking feeling that I was evangelising about something that didn’t work.

A few more days of fantastic interspersed with no-better-than-NovoRapid, and I started to regret ordering a large, prohibitvely expensive supply of the stuff.

Whoopsie

And today, it finally hit me. I had just pulled my old Afrezza carry-box out of the cupboard, and started puffing. I got the usual Chuck Norris kick-in, and thought nothing more of it. As I went on, I pulled more Afrezza out of the fridge and dumped it in my carry box.

Yeah. Along with the old stuff.

Yeah. The stuff that had been sitting in a cupboard for over a year plus the stuff that had been sitting in the fridge for over a year. In the same box. I was puffing them at random, like those high school maths questions about pulling marbles out of a bag.

I lost my marbles

Whether eliminating this problem will make my Afrezza rave-worthy remains to be seen. I’m biting my nails to be honest. I want so badly for this to make my life better. I want so badly for this to make others’ lives better.

Part of what happened this time was that I was subconsciously intending to use every last unit of Afrezza, because of the cost. So, first the ones in my box, then the ones in the fridge, then my new supply. I didn’t really think any further.

I’m sure anyone would tell me that year-old medication stored in a cupboard out of its original packaging was probably best thrown out. It’s common sense. Even if Afrezza is remarkably temperature-stable (watch Matt Bendall’s video!)

Argh. Gaffe of the century! But you know what? Feeling stupid does nothing but take us backwards.

Reflections

This wasn’t a mistake. It was a success. We should feel excited when we find patterns, causes, solutions, even if we feel that we should have realised months, even years ago.

Also, there are mistakes we make over and over and we get furious with ourselves for making them once again. Fury only makes us more stressed. Self-loathing creates a self-fulfilling view of yourself. A much better reaction is to calmly work out how to reduce the mistake in future. Another great reaction is to simply embrace it—you will make the mistake sometimes, and it’s OK because there are plenty of other things you can focus on to improve your diabetes management.

I called myself an idiot earlier in this post—because it’s something people can identify with. Diabetes gives us plenty of reasons to feel that way. But it’s not a healthy way to see yourself. I hope my gaffe will help remind you that diabetes is about little wins each day, rather than endless failures. Because even when there are seemingly preventable problems like this one, we don’t have time to stop and think constantly.

There are other problems that arise from my skills and confidence—but they’re stories for future posts.

Diabetes Expo 2019

Well, I just attended the Melbourne Diabetes Expo. It was a strange combination of rewarding and mildly disappointing. But this wasn’t my first time so let me rewind two years.

I went to the same Expo last time it ran in 2017. As we all know, “diabetes” means “Type 2 diabetes unless otherwise specified.” Naturally, the expo made it clear it was for both types of diabetes. If you try to cater to both, you won’t disappoint the Type 2s, but it’s hard to get it right for Type 1s.

I hadn’t been to a diabetes expo before, but I had a good idea of what to expect. Talks aimed at Average Joes with diabetes. Stands by the usual pharma and biotech companies, showing off their latest products, and other stands promoting diabetic socks, pump cases, and what not. Nothing I hadn’t already found through thorough research on the internet.

But some part of me said, “Don’t be cynical, take a positive attitude. You often learn more than you expect at things like this.” So I went.

To be honest, it was pretty much what I expected. Lots of absolute basics, a large Type 2 focus, sitting through hours of Baby’s First Diabetes, but with the occasional thing that was new, insightful, or rather useful.

Don’t get me wrong about the stands. It was good to actually see and feel insulin pumps and pens and meters in real life. There were some unexpected stands too, like honey pops (useful), type 2 cookbooks (lame), and hearing and eye checks.

Despite the lameness I had to sift through, I felt it was useful. I was disappointed that there weren’t more advanced talks relevant to people with type 1, although I guess it’s to be expected.

But I tried to strike up conversations with other type 1 folks. A lot of them were similarly disappointed, but we clicked, exchanged stories, talked about what we had hoped to see. These weren’t the sorts of cynical people who pollute—er, that is, populate—online Facebook groups. I realised that one of the good thing about events like these was that it was idealists who would be likely to turn up and connect.

Oh, one more thing. I was at a “latest science in diabetes” talk where an audience member asked about the recent developments in inhaled insulin. The presenter said something along the lines of “well yes but I think we’re likely to see better results from the real science.”

I had to. I just had to grab the mic and say that actually I was using inhaled insulin and if anyone wanted to talk to me after the session I’d be happy to. The presenter was furious. A number of people came to talk to me later and were very interested and supportive.

In the end I was glad I went.

Two years later

So it’s 2019 now. Not much has changed. I went to the talk about low-carb eating hoping to get some gems on how to bolus, some recipe ideas, and how to manage eating out. Unfortunately all I got was a definition of the low carb diet, a comparison with the “recommended” food pyramid diet, and some studies showing that there was not much to show. Some of that stuff was interesting, I suppose.

Everything just has that tone of “mildly disappointing but kind of worthwhile.”

Except the talk about research. Now that was interesting. I had always thought that SGLT2 inhibitors must have some side effects. Wouldn’t they strain the kidneys? Apparently not. The research seems to show they are bloody good for you. Less cardiovascular problems, less kidney problems! In the case of certain kidney patients, there was a 40% reduction in the chance of kidney failure. What. The. Hell.

And there were a few other studies with extremely promising results. One of them (it sounded like “twinulin” but Google says that isn’t a thing) had crazy results for type 1 and type 2 patients. There had also been research into an actual oral insulin that could be absorbed by the gut.

I walked out feeling impressed and feeling there was a significant chance that we were on the cusp of a leap forward in diabetes treatment. However, I felt threatened that the years of blood, sweat and tears I had put into building my diabetes toolbox would be all for nothing if I tried out these new drugs. (Of course, that is a silly mentality. Really I should look forward to difficult, complicated things being thrown away.)

Actually there was also a talk about social media, which was mostly Social Media 101 (as I expected) but there were also a few personal stories that were touching and eye-opening.

OK, well maybe I’m being kind of unfair and the 2019 one was rather better.

The greatest difference between 2019 and 2017 was that “the establishment” was starting to acknowledge matters that people were taking into their own hands. Low-carb diets were acknowledged. DIY artificial pancreas tech was being acknowledged. Afrezza was being acknowledged. BionicWookie was there, as well as many other loopers.

I was better at chatting with people at the stands. I was much less um, stuck-up, than last time. I actually purchased a few things. 🙂

In my defence my hands were shaking

During the diabetes tech panel, someone happened to ask what the new inhaled insulin device looked like. I got all excited (and nervous) and it flew from my hands onto the floor. Way to go, Aleks. Anyway, I held it up and said “it looks like this!”

Then Renza (who was on the panel and has an awesome blog) said “I knew there’d be one in the audience.” (Supportively.)

One of the staff tried to get me over to the mic, but I was resistant. What would I say? I’m not good at off-the-cuff. Eventually I thought of something and went up. The gist of it was, “I’ve tried everything. The most important thing to learn is to know when something isn’t working, and then try something else.” Seemed to be well received.

After the talk I got a chance to talk to Renza. I feel a bit... undeserving—I don’t feel like I’m enough of a big deal for such respected, busy people (not to mention internet-famous) to have time to talk to me. But there you go.

All in all, I was quite happy I went. There are many things I’d like the organisers to improve next time, but I appreciate that it isn’t easy.

Afrezza Reboot

Well, as always I feel a bit embarrassed to admit when I’m not on top of my diabetes or have made a potentially bad decision. That’s how it was for a while recently. In a perfect world I would have written a post about it but, well, now that I may have figured it out it’s easier to admit what was happening.

xDrip has this useful History feature where you can see the average BG over a selected time period. I compared the weeks before low-carb with the weeks during low-carb. The average was almost the same. True, the low-carb average was a tiny bit lower. But not what I expected. However, my sugar stability was much, much better. Fewer, smaller spikes.

Why was it so hard to keep my sugars down? I suspected I might just have gotten lazy so I started working a bit harder.

Nope, something was wrong. I observed an interesting effect. There didn’t seem to be a “correct” insulin dosage. There was no sweet spot. My sugar would either go high and then plateau, or modestly rise and then crash later. Was it the protein? The fat? What was going on?

I pondered this for a few days. And then I had a lightbulb moment. When you eat a meal, your body does a liver dump. Well, it tries to. In a non-diabetic, their rapid insulin spike tells the liver to shut up.

So the insulin I was taking wasn’t really to cover protein or fat. It was to mop up the liver dump. But mealtime liver dumps are quick. So after that was dealt with, the tail end of the insulin (even the intramuscular stuff) would drag me doooown.

If I took less insulin, the liver wouldn’t get the “shut up” signal, and keep dumping for longer. So the intial dump would kick me up, and then things would sort of cancel out up there.

Suck that, diabetes

I know about this “shut up, liver” thing because it’s part of the theory behind why Afrezza makes dosing easier. So naturally, I immediately thought of Afrezza. I still had a stash of Afrezza. Maybe I ought to give it a go.

And so it began. My first meal-puff went fantastically. Blood sugar was almost immobile. Over the next few days I had a lot of great moments and a few less-great moments. To be expected. You can’t expect to get the hang of a totally different insulin straight away.

So, I’m nervous about it but pretty optimistic at the moment. Updates to come.