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.

Staring me in the face

I expect this is a known psychological effect, or maybe it’s just me. But I think it’s a psychological effect.

When you have two options to solving a problem, and one of them feels out of the question, you can sometimes forget it’s still an option, no matter how bad the problem gets.

Take Type 2 diabetes for example. Most people are terrified of insulin injections, so they will choose diet/exercise/tablets and forget that insulin is an option... no, wait, they won’t. Bad example.

It’s more in situations without an inevitable ‘last resort’. For example, if a person hates the idea of a teacher’s wage, and becomes a lawyer or software developer but ends up unhappy with their job, there’s a good chance that it won’t even occur to them that they can change careers.

So here’s what happened to me.

Thanks to Lamictal, I shot up from being so crippled I could barely work, into an intense, high-stress job in the space of a month. An absolute miracle.

Due to the stress, I didn’t feel I could handle giving up the comfort of my favourite foods. Due to the fast-paced job, I couldn’t afford risking a loss in energy, cognitive function, mood, triggering epilepsy, or changes to my medication needs.

So low-carb was considered, and deemed absolutely out of the question.

Makes more sense than diabetes

Diabetes was pretty terrible. Teaching has the same effect on blood sugar as sporadic bursts of exercise—which for me are disastrous. Stress levels were up and down, and we all know that stress hormones are not easy to measure. My general routine was unpredictable. And I comfort-eated. Ate. Whatever.

Low carb had already been discounted. Didn’t even occur to me. I just got on with a roller coaster of bolusing and correcting and CGM alarms and crappy sugars.

This got worse and worse. Stress built up. Diabetes got harder which created more stress. I had a day here and there of extended exercise, each time making diabetes wash out for a week. Possibly worst of all, my intramuscular injections gradually became ineffective.

Low carb was still off my radar. I was trying to problem-solve some diabetes related thing with Bianca’s help (as frequently happens) and suddenly it hit me. Low carb was an option.

It became apparent that the status quo had become more out of the question than low carb. Impossible, right?

So, grudgingly, I switched. Having done it years before, I knew what to expect food-wise. And how limiting the options were for eating out.

Nothing bad happened. My cognitive function and energy levels did not decline. My epilepsy seemed to be fine. It’s a pain to cook and clean up, and food is much less fun. But in the last few weeks my sugar has stopped being so out of control.

I do feel that, had a new option become available, I would have jumped at it. But since low-carb was old and dismissed, it didn’t even register. Well, for quite a while, anyway.

HELLO WORLD


This blog has been many years in the making. There were so many well-defined ideas pent up in my head for so long, but I couldn’t write them down. And I mean really couldn’t. I had a serious, undiagnosed illness that meant writing was not a thing I could sustain. At the time, I had no idea why.

But here I am, having made an incredible recovery, ready to write. Words can’t express how much this means to me.

I intend to write mainly about my journey with type 1 diabetes and epilepsy. Both of these diseases are very isolating, because they are so complicated. There’s a lot more to them than most people assume. “Oh, you have to inject yourself with medicine, I could never do that.” “Oh, you have fits, I feel so sorry for you.”

Yeah nah. The needles are the easy part. I don’t have fits, but even for those who do, it often isn’t the worst part. I like it when people show they care, but it can still be really painful when someone clearly has no idea what I actually go through.

As someone living with two crazy chronic illnesses, I know it’s very nice to read about someone else who has similar experiences to you. It’s validating. It’s a relief, it releases pent up feelings. It makes you feel like you’re not fighting alone. So I hope I can give that feeling to others. I also hope others will find my experiences valuable, perhaps learn something or get new ideas.

But what do I know? I’m not a marathon runner or film maker or doctor. I’ve always been terrified of putting myself in the spotlight and I’m crap at networking and have never collected followers before. I’m not sure I’m meant for this. But part of me says I’ve got something to offer in my own way, so... here goes.

Welcome to my blog!