Dexcom rebatterying

As said in the previous post, after Simon sent me a transmitter (much appreciated) that didn’t work, I decided to try my hand at re-batterying my own.

All I used was a file, a small screwdriver, a razor blade and a hand drill. I went to Bunnings to get the batteries (which they have online) but they didn’t stock them. So I tried shopping centres and chemists, one of which had a very similar battery for $1.30. Defeated, I went to Mister Minit which I knew would be pricey but I didn’t expect to be $36 pricey!

I had Simon’s as a guide. Here is a comparison.

Simon’s is on the right with the nice epoxy

Getting to the batteries

The “feet” of the transmitter fit nicely into a groove in this block of wood.

Ready to go

After ages of filing, I finally struck silver.

First contact
Second contact
Made in Switzerland!
Fully accessible
Terminals lifted

Getting them out

Helps to get them out
Those are the old ones. Not the new ones.
That’s how much I had to file off

Putting it back together

Except for epoxy

Aftermath Epitaph

I did the voltage check which was fine. Finally I tried it out and... you guessed it, it didn’t work.

After all that 🙁

The Transmitter Saga

Well, our 7 month work posting in Melbourne is over, and we’re driving back to Sydney. Can’t wait to be home, back with family and friends. Keen to start the next big thing. Relieved to get out of the cramped, noisy, smelly apartment we lived in.

Of course, everything goes wrong.

Once we’re on the extremely busy highway something dangerous happens and we have to pull over. With trucks racing past at 100km/h I climb over the passenger seat to get out.

After that, the car won’t start. Flat battery. Call AAMI. We’re not covered for roadside assistance. I ask if we can upgrade. We can, but we won’t get roadside assist for two weeks or something. (Lucky you’re with AAMI!) Walk to a petrol station. No batteries. Luckily highway incident response pull over and jump-start us and we head to the nearest battery vendor.

Stay in Albury overnight. Dexcom transmitter dies in the middle of the night. NOT GOOD. WHY NOW, WHY HERE?

Being below 6mmol/L can be a disaster for my epilepsy. Being high all the time isn’t good either. So, testing my blood glucose every 45 minutes it is.

$500 for a new transmitter, no thanks. We contact Simon, the legend who replaces the batteries in Dexcom transmitters for free. He offers to Express Post one so we’ll at least have it once we get home. Thankfully it’s there on time, and what a beauty. Lovely transparent epoxy.

There’s half a D up the top there

Guess what. It doesn’t work. I keep getting a “raw_data: 0” error in xDrip. So I try everything. Simon is at a loss. I update from my slightly modified version of xDrip to a fresh install of the latest version. Same error. I try a different phone that worked in the past. Same error. Simon is scratching his head. He’s never seen the error. Google has never seen the error except in xDrip+’s source code. Why is all this happening to me?

Every. Single. Reading.

No CGM. Testing constantly. High a lot. On top of all the moving stress, this is really straining my epilepsy, which is really making life very hard to bear.

It’s the weekend, so whether I order a proper Dexcom transmitter, or have Simon send a new one, it won’t arrive until Monday. Lightbulb! I can re-battery my own transmitter! I go and do that.

Time for some DIY

Well, that was a fun experience, which I will save for my next blog post.

Did I mention I was getting the same error?

But guess bloody what. This new transmitter doesn’t work either. THE SAME ERROR?! I ask on the xDrip+ Facebook group. No luck. I change sensors twice as well. I have changed every component in the system except myself.

I am so fed up with Dexcom. Having tried a sample of the Libre before, I know that I like the size and it’s much easier to insert. I have wanted to try the Miaomiao for a while now, but I kept putting it off because of it not working for me, plus that apprehension about getting stung in the first few weeks while I learn its quirks.

Finally I have a great excuse to take the plunge and try Miaomiao. I order one and just give up on my Dexcom until I get the Miaomiao. Back to testing all the time.

But in the spirit of things going wrong, Bianca’s sister goes through a rough break-up and needs somewhere to stay. (Not that I mind her staying. It’s the break-up and the logistics that suck and are stressful for everybody.)

And worst of all, my epilepsy symptoms are worsening again.

(Here’s some more fun. My BG meter battery dies. I replace it. The new battery is flat. I replace it. THE THIRD BATTERY IS FLAT. I replace it. The fourth one works. I hit a pothole with my bike and it becomes temporarily unusable. One of my good friends with epilepsy has two tonic-clonic seizures. My dad’s business phone line burns out and there’s no internet. And I can’t seem to get a hold of Star Track for a week to find out where my almond milk delivery is.)

Welcome to Sydney!

UNGGHHHHHHHH

Good Bad morning everyone! I hope you slept better than I did, although knowing diabetes I’m sure there are a couple of you who really didn’t.

I lost count of how many times I was jolted awake by my CGM alarms last night, but it was around 5. Lows and highs, as usual. Geting up to treat lows several times.

I’m sleep deprived already, for various reasons, so when I woke up this morning with that disgusting lazy tired angry lead-weight feeling, I was like

Obviously I Do Not Want this to happen again. Preferably ever (haaaah). The go-to approach is to try to isolate the cause. Recent exercise? Pre-sleep carbs or insulin?

But... recently my insulin sensitivity has plummeted (4 units seem to do what 1 unit did a couple of weeks ago), my basal needs have been playing party politics (right, left, and independent!) and pretty much nothing is stable so basically...

The way things have been going recently, the “diabetes debugging” approach is futile. That’s when I resort to “diabetes tinkering”.

(Don’t do this at home.)

In plain English, that means that it is useless to try to find what caused this problem; I just need to mess around with things until they work. Which is actually fairly typical of MDI basal problems, although I don’t think that’s the main factor at play here.

Over the last couple of weeks, my Levemir dose has been slowly migrating from evening to morning. It was at around 8 in the evening and 2 in the morning, and there was a complex dance including the addition of a few units in the early afternoon, and an overall rise in total daily basal, and now my evening basal seems intent to reach zero.

Such crazy things are happening—I’ve been steadily losing weight on low-carb, which of course is supposed to increase insulin sensitivity. The opposite has happened. People say their insulin needs drop when they start low-carbing. Well, mine didn’t. (When I tried low-carbing for a while years ago, insulin needs dropped maybe 60%.)

So once again,

Of course, I have been having snacks in the evenings, and being lazy or making mistakes. And I’ve also started using a very different kind of insulin (Afrezza). And my epilepsy medication hasn’t been consistent recently. Those last two things scream for “diabetes tinkering”.

Plus, life is hectic. I feel like, because of this blog, I need to be an example for others, or something. But after all these years I haven’t managed to get to the point where I can usually go “ahhh... it’s doing that thing again” and know what to do about it. It’s like the space of diabetes configurations is infinite and diabetes wants to explore them all.

Some people have it easier; some have it harder. Some can find carb ratios and basals that more or less work for long periods of time. Others are living on a roulette table that never stops spinning. And it can change over time. In the years when my epilepsy was untreated, everything would swing and flap around, weekly. Now it’s not too bad—although I’m asking for trouble by changing diets and insulins and psychotropic medication.

Did I have a point...? Oh that’s right—my diabetes is all over the place and I wanted to share that with you, rather than hiding it.

PS I remembered that in one of my fitful dreams last night, I had a compelling reason to remove a pillow from a pillowcase. I don’t remember the reason but there was one. I thought it was just a dream. But I went to the bedroom just now and I found this...

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.

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.