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Our kid has always enjoyed drawing. I’m someone who struggles to draw a stick figure, so I am frequently impressed by her ability to sketch and paint things that are actually quite good, and I’m able to easily identify.

The other day, I was tidying up the kitchen table when I came across one of her sketches. I picked it up and looked at it. ‘This is gorgeous, darling,’ I said to her as she sat at the table doing her homework. And then I stopped. ‘Wait…why are you drawing a woman pole dancing?’

Exhibit A

She looked at me with that expression that only a teenager-in-training can, and then started laughing. ‘Mum!’ She exclaimed, taking the drawing from my hands. She turned the paper ninety degrees, and held it up to me. ‘It’s a witch on a broomstick!’

Exhibit B

Ah, perspective!

On Friday last week, I spoke at the first Australasian Diabetes Advancements and Technologies Summit (#ADATS) in Sydney. My talk was ‘The consumer perspective on new technologies. So, as usual, I crowd sourced some ideas from Facebook friends. I do this for two reasons… one: it gives me the opportunity to share the thoughts of other PWD so that my voice is not the only one heard. And two: I’m lazy.

I centred my talk around the love/hate relationship I have with diabetes technology and asked others to give me a couple of dot points on what they love, and what they don’t really love (or hate) about diabetes tech.

In many cases, the things people love are also the things they hate, and that makes so much sense to me!

Our perspective of our diabetes devices can change all the time. Some days, I am so appreciative for all the information my diabetes technology offers; other days I want to ignore it as it just makes me want to cry. Sometimes I love the devices and I can’t imagine being without them; other days I long for my body to be free of them. Some days, I love the alerts and alarms, and respond to them promptly; other days, the noise is unbearable and I switch off everything I can so I don’t need aural reminders of just how hopeless I am at diabetes.

My perspective can spin on a coin, and often it takes very little for me to move from loving every piece of technology to wanting to bin it all.

The point of my talk was not to bitch and moan about the technology I know I am so fortunate and privileged to be able to afford and use. It was to try to explain that the bells and whistles, and data and information can truly be wonderful. But our feelings about the tech will change (often several times in the space of a day) and this does affect how we feel about our diabetes.

Disclosures

My travel costs were covered by the National Association of Diabetes Centres, the organisers of ADATS. I was on the ADATS organising committee.

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I’ve now been looping now for a couple of months. During that time, I’ve come to understand that I know far less about diabetes – my diabetes – than I actually realised. I’ve come to realise that diabetes is far more complex and difficult than I ever thought. I’ve come to see that the tools we have been using are so incapable of managing with the constant changes of diabetes. And I’ve come to realise that using tech off label is the only way to go anyway towards overcoming these challenges.

After my first couple of weeks of looping, I honestly thought that the whole thing was somehow tricking me. What was this ridiculousness of waking every single morning with numbers firmly between 5mmol/l and 5.5mmol/l? I’d look at my Loop app suspiciously, switching to my Dex app only to have the number confirmed, and a straight and steady glucose trace showing that I’d been there all night. How did THAT happen? I’d ask myself every. The Loop app had all the answers.

The automation is where the magic is. Prior to looping, I had about fourteen different basal rates sets for a 24-hour period. I had gone through times of extreme basal checking to try to tighten up those rates as much as possible, tweaking them here and there, and I thought that I had it pretty right. And insofar as basal rate settings on a pump, I suppose I did have it right.

But loop has taught me that while the overall shape of my basal rates was pretty spot on, there is only so much a pump can do with set, static rates programmed into a pump. There is nothing my pump could do to respond in real time if I needed more basal insulin unless I manually inserted a temporary basal rate.

On an average night for me now, my basal rates are automatically being adjusted dozens and dozens of times. Remember, this is during the night, when there is no need to contend with food or most other factors that affect glucose levels.

You know those mornings where you wake up, see a number in the double figures and wonder if it is at all possible that you sleep walked to the kitchen, sleep baked a pavlova and then sleep-ate the whole thing? Loop’s automation addresses that.

One morning I woke up to see that my basal rates over night had been more than double the set rate for three hours. I’d gone to sleep with a glucose level of 5mmol/l, but for some reason at about 1am, I had started climbing. Instead of waking high, the significant increase in basal insulin took care of it and I woke up in range.

Is looping the solution to all diabetes problems? Of course not and I’d be naïve to think that there was a silver bullet. But it is certainly a useful tool in my diabetes treatment arsenal, especially when combined with eating mostly lower carb. And thanks to the automation, it certainly does lift some of the burden. It also helps beautifully when I am ovulating or my period is about to start, when all bets are off and I just resigned myself to a couple of days of mayhem.

Undoubtedly it is not THE solution – in fact, if anything, it has made me despair more about what we are lacking in diabetes technology, because the increased understanding of diabetes that has come with using Loop makes me more desperate and impatient for tools that actually can manage more and more of the complexity of diabetes. I have a new found respect for that complexity.

Real time; Loop and iPhone app.


Loop info is all here including how to get started. 

In my jet lagged stupor (HI! I’m back!) I reached for my phone in the middle of the night, and as I scrolled through my social media feeds, I was promptly alerted to the fact that Animas Corporation, a Johnson & Johnson Diabetes Care company, was out of business. Effective immediately, Animas pumps would no longer be supplied in the US or Canada

My initial thought: ‘No surprises here.

My second thought: ‘What a mess.’

(My third thought: ‘Jet lag sucks.’)

So, what does this mean for Australia? Australian Medical and Scientific Limited (AMSL), the Australian distributors of the Animas pump, have today stated that the overnight announcement does not affect Australia. Supply of Animas pumps, pump consumables and technical support will continue.

So, business as usual?

Well yes. It is. And that’s great for people who are using Animas here in Australia. Unlike our friends in the US, we are not suddenly being forced to make an urgent decision about which pump will be changing to.

But can we say business as usual when we know not that there will be no upgraded, updated or new technology from Animas in the future? I don’t really think so. One of the important factors of diabetes tech is the element of ‘what’s next?’ There is no ‘what’s next?’ from this company.

The pump market seems to keep getting smaller. Deltec Cozmo and now Animas are all out of the game in Australia leaving us with less and less choice. (Cellnovo has delayed their 1 October launch for another month.)

My fear is that we will end up with no choice at all. I am very much turned to the US right now with my eyes are firmly planted on Bigfoot Biomedical and Beta Bionics as I watch the developments of their automated delivery device systems. And, of course, I have particular interest in how they are going to supply markets outside the US. Are they even going to supply markets like Australia?

This is not a good day for people with diabetes.

Happier days with my Animas Vibe pump.

It’s both exciting and slightly demoralising walking around the exhibition hall at a truly international diabetes conference. Exciting because it’s often where new things are launched. And it’s a good place to find coffee. Demoralising because a lot of the exciting things will never make their way to Australian shores. And the coffee can be really shit (the Lilly coffee stand was staffed by Aussie baristas, so it because my favourite!).

On day one, I wandered around the Expo Hall at EASD, doing the circuit a number of times. I seemed to find myself repeatedly drawn to stands showcasing insulin pumps. Maybe it was subconscious. Maybe it was just that their stands were the brightest!

Interestingly, Medtronic was not at EASD. Their absence was conspicuous – especially in a week of another product recall – and one that really is significant. I did see several talks that mentioned the 670G however, so it was disappointing that they were not here to answer the questions that many people seemed to have. (Although, given that I spent most of my time with European advocates, those questions would have all been variations of ‘When are we getting it?’…)

Animas was tucked away in the corner of the J&J stand, with no news on offer about where things are with the long-promised, and long-awaited Vibe Plus which is integrated with Dexcom G5. Rumour on the street (but it is just rumour) is that it’s not happening any time soon.

There was little mention of the Roche pump offering on their stand, although there were images and sales staff to answer questions. But there is nothing new coming in this space from them at the moment with most of their energies being dedicated to MySugr, GoCarb and the Senseonics implantable sensor.

I said hi to the European Cellnovo staff (all of whom somewhat disconcertingly knew who I was). They are super excited about launching in Australia. There is nothing new from them at this stage (but you can read my initial thoughts on the pump here, and Frank Sita’s here.)


No stranger to the Australian market, DANA had a pretty damn big and glossy stand here at EASD, proudly branded with their somewhat odd tag line is ‘Ubiquitous insulin pump’. DANA in Australia (distributed via a third party) has had some issues in Australia recently – mostly to do with the availability of their infusion sets.


The most exciting news from DANA was their big EASD announcement of their new pump – the DANA RS. You can read Mike Hoskins’, from Diabetes Mine, scoop about it here, but the essence is that the pump is ‘Android OpenAPS-able’ without the need for an additional piece of hardware. This is a very big step in the very right direction for integration of pumps with the whole #WeAreNotWaiting philosophy and congrats to the team for embracing it.

What I’m far less enthusiastic about is that DANA has persisted with using a proprietary battery. I find this really, really appalling and utterly non-user-centric. This was the case with the previous DANA R pump, and to replace the battery, users needed to place an order for cartridges.

No idea when the new DANA will be in Australia… I guess it’s just a wait and see, but absolute credit to DANA for making it possible for people to use Android OpenAPS with a new pump.

Ypsomed (‘Ipso-med’) had their nifty Ypsopump (‘Ipso-pump’) on show and I had a little play. It’s fun – I like the look of it and it is super-easy to use. I’ve been told that they are heading down under, so please do watch this space!


And finally, the bright and shiny team from Kaleido were brightly and shinily showing off their pump again. It still is beautiful. It still is fun. It also still is not on the market. I really, really would like to see them actually get to launch stage. And soon.


Okay, so the pump wash-up in relation to Australia is this: it looks like we might actually start to have some real choice on the pump market in the (hopefully) not-too-distant future. I remain frustrated with the current situation, dismayed that if I wanted a new pump this very minute (which I am entitled to) my choice is a pump that is just too large and clunky with features that just don’t work for me, or exactly the same pump as I’ve been using for the last four and a half years. Come 1 October Cellnovo will be ready to go with consumables on the NDSS, and there is the first hint of improved choice for people with diabetes.

And that can only be a bloody good thing!

A recurring theme throughout last week’s ADS ADEA meeting in Perth was the need to manage expectations. I think, in general, we do a really lousy job of this in diabetes.

We’re told that can expect to live a ‘normal life’ after a diabetes diagnosis, when that’s not necessarily the truth.

We’re told we can expect to eat whatever they want, when really, the effort that goes into calculating medication doses depending on the nutrient value of our foods is hard and it may be easier for some to actually limit food choices to make things a little easier.

We’re told to expect a cure in five years’ time, when the truth is that a cure is not even on the distant horizon.

We’re told that we can expect new technology to significantly reduce the burden of living with diabetes, when the reality is that sometimes, it’s more – not less – work.

We’re told to expect person-centred care, when, really, our health system, is not designed to cater for the individual needs of people living with diabetes.

We’re told that emerging technology will be fully automated, smart and cure-like, but we are not told that there will still be human-input necessary and that the devices are not as smart as a functioning pancreas.

We’re told that if we keep our A1c below 7% we can avoid complications, and yet, there is no guarantee, and some of us do develop complications despite an A1c regularly hitting that magic number.

We are told that if we count carbs and dose the right amount of insulin at the right time, we can keep our glucose levels in range, often neglecting to be told that there are a lot of other factors at play.

We are told all this, and then, when these expectations are not met, we are told we’ve failed. Or we are disappointed.

Here’s the thing. The tools are actually really great. Our health system here in Australia is mostly terrific. The majority of our HCPs genuinely do want to give us the best care they can. We don’t need to oversell things as much as we do.

Our expectations are being set so realistically high, that it’s impossible to meet them.

So, THIS is what I would like to say about all the things I’ve covered above to help manage expectations:

Your life will be different after a diabetes diagnosis. But that’s okay. Your new normal is going to be different to your old normal, but hopefully, there will be very things that diabetes will prevent you from doing. Acting like a pancreas is not really normal, but you can do it!

Yeah, you can eat whatever you want. But it’s undeniable that certain foods are harder to manage after your pancreas decides to go on strike. Find what works for you – and that can change. But do be prepared for food to become something that can be a little fraught because you may find that some of your most favourite foods are a little difficult to deal with.

Researchers are brilliant and amazing and the advances in diabetes management are actually quite mind blowing, but a cure? We’re nowhere near that yet. Keep up to date with everything and try to mine through it to work out what is relevant for you. Keep getting excited about management and tech advances – but do keep it in perspective. (Also – consider the source. I promise you that the Channel 10 news or Buzzfeed is NOT going to be where you learn that diabetes has been cured forever.)

You are going to have a lot that you will want to know and work through, and possible a variety of healthcare professionals to see. As wonderful as it would be to have someone to coordinate it all for you, you’ll have to put in the leg work to find the right team, the right service and the right people. And then, once you’ve found them, it’s still up to you to direct what you need. Otherwise you might find yourself at the mercy of a system that is not really going deliver exactly what you need to get the most from it.

You may have heard that in the US there is a (hybrid-closed loop) pump/CGM combo. Some are calling it an artificial pancreas. It’s not. The tech is incredible, but it’s not fully automated. It still requires calibration and it still requires operator input. This is not me being negative, because the tech is exciting. It’s me being realistic about the level of automation

No new devices are going to completely remove the load diabetes adds to your life, or your involvement in their operation.  Insulin pumps need buttons pushed; CGMs need calibration, food needs to be considered. Full automation may be the goal, but it’s a while off.

An A1c of 7% or below will indeed reduce your risk of developing diabetes-related complications and there is a lot of evidence to support that. But it doesn’t eliminate the risk. That’s the annoying and somewhat unfair reality of diabetes. Unfortunately, it’s the reality. Obviously, do what you can to manage your diabetes as well as you can. But don’t expect that a number is a guarantee of anything.

Carbs and insulin are only part of the equation. How you’re feeling emotionally, illness such as colds and flus, hormones, nutrients other than just carbs, the phase of the moon (well, maybe not) … all these impact on your numbers. And they change. Don’t expect that there is an equation that will work all the time.

In life, we’re often told to expect the unexpected. But in diabetes, the unexpected is often only that way because what we have been told to expect is unrealistic. If we were told the truth, and provided with realistic expectations from diagnosis – and throughout our diabetes lives, perhaps we wouldn’t feel that we’re constantly falling behind and failing.

Here’s me and my boss talking about expectations in technology. 

Disclosures

Roche Diabetes Australia has covered my travel and two night’s accommodation for my stay in Perth as I am a presenter at the Roche Educators Day (RED). There is no expectation from Roche that I will write anything about the RED, but I expect I will because it’s always such an interesting and enjoyable day!

The remainder of my time in Perth is part of my role at Diabetes Australia.

New York in the rain is quite magical. That’s probably something only tourists say, but it’s what I was thinking as I emerged from the subway, way, way downtown on a cold and wet January afternoon early this year.

I hurried along the busy business district streets to my destination – an old cosy pub, chosen by the local I was meeting because of its historical significance (which you can read about here).

I was catching up with a diabetes friend – one of the smartest people in the game – to chat about what was going on in our respective diabetes worlds.

After a while, we started talking about how exciting new tech developments will be finally coming to market in just a few short years. And then, he told me about Loop, showing me his phone and briefly explaining what it was all about.

I was enthralled. ‘Wait,’ I said. ‘So, your iPhone now drives your pump? And basal rates are adjusted automatically?… Whoa! Send me all you can about it,’ I pleaded, after he promised that it wasn’t that difficult to set up.

This was back in January. It’s now August. In the intervening months, I read through the documents and have had conversations both on and offline about Loop and what it does. I searched through my diabetes cupboard for the pump I’d need (finding my old-school Medtronic 522 hidden away).

In May, I bit the bullet and ordered one of the components required to build my rig. About ten days later, a box arrived and inside was a tiny little computer and battery – my RileyLink. I took them out of their packaging, running my fingers over them gently… and then got scared and popped them back in the box, and left the box at the back of my desk.

Hello RileyLink!

Every time I sat down to work, I’d see the box and sometimes I’d take a peek inside again. And then I’d read the documents again, each time a little more committed to get started.

In San Diego, I chatted with a few people who had taken the leap to Loop, everyone telling me that it was life changing and also promising that it wasn’t too hard to set up. I kept having conversations on Facebook, Twitter and Instagram with people from all around the world who were Looping, every one of them urging me to get on the bandwagon and offering to answer any questions I’d have.

I joined Facebook groups, continued to read over the documents, and every time I was ready to go, I freaked out about how technologically advanced it all sounded, and how technologically inept I am, and shut everything away.

Until ten days ago. Ten days ago, I did take the leap. I read through the Loop documents another time. I told myself that I could do it. And I started. Step 1….

I hit a snag a few steps in, but fortunately was meeting a Twitter friend on Wednesday to chat. He is not technologically inept. In fact, he is the complete opposite and answered all my (probably rather silly) questions and didn’t even roll his eyes once.

I went home with Loop installed on my phone and proceeded to enter all my settings into it.

I played around with the app and before I knew it, I was blousing directly from my phone (rather than from my pump):

After a couple of days of running open loop, I took the plunge and switched to closed loop. And waited and watched. The circle on the top left hand corner of the app closed and I waited for the automation to begin. And begin it did!

‘OHMYGOD,’ I squealed to Aaron, as the first basal adjustment was made. ‘LOOK AT THIS! IT’S ADJUSTING MY BASAL RATES ALL ON ITS OWN. LOOK, BABE. LOOK!!! THIS IS JUST LIKE YOUR PANCREAS…Except it’s a mobile phone, mini-computer thingy, insulin pump and Dexcom. BUT I’M JUST LIKE YOU!!!’ To his credit, Aaron nodded his head, pretended he was as excited as me, and agreed that this was EXACTLY the same as a functioning pancreas.

I admit to being more than a little fascinated and obsessed with watching what Loop is doing and the accuracy of its predictions.

This morning’s waking Dex number. And the Loop app showing me how we got there…

I’m only a few very short days in and already, I can see that this is giving me a whole lot more insight into my diabetes. I had a very minor car accident the other morning and seeing the adrenalin spike, and how Loop managed to deal with it, was amazing. I would have rage bolused the spike which would have inevitably resulted in a low. Instead, I resisted the urge to bolus and allowed an increased basal adjustment to bring me back into range slowly and safely.

Obviously, as with everything to do with diabetes, Loop isn’t for everyone. But for me – firmly in a diabetes rut and living in pump limbo – this has been just what I’ve needed to get me re-engaged.

My clever mate David (who is running Open APS) 3D printed me a case for my RileyLink. In pink, to match my pump.

Wait! What is Loop? If you are interested in reading about Loop and how to get up and running, all the info is here.

A few weeks ago, I wrote about the tech rut and pump limbo in which I seem to have found myself. Since then a couple of things have happened to start to move me from a sense of complete and utter inertia about the state of play in diabetes technology in Australia right now.

Firstly, I actually made steps to start Looping. I’ve had all I need sitting here ready to go, but it was only last weekend that I actually started working through the steps to get things going. More on this in coming weeks if I can get it all sorted out and actually understand what the fuck I’m doing.

And the second thing was when Aaron from Medical Specialties Australasia reached out to me with the exciting news that the Cellnovo pump system is coming to Australia. Very, very soon. We arranged to meet at a café so we could chat and he could show me the pump. (For the record, MSA was the Australian distributor of the Deltec Cozmo pump many moons ago.)

According to Aaron, the pump has TGA approval and is listed on schedule 5 of the prosthesis list, meaning those with private health insurance should be covered. Consumables are in the process of being listed on the NDSS and costs will be comparable to currently listed insulin pump consumables.

The Cellnovo ‘kit’ includes two pumps and a nifty looking touchscreen handset which drives the pump and doubles as a glucose meter. The pump is small and is stuck directly to the skin via a Velcro patch. (It’s not a patch pump as there is a small tube that runs from the cannula to the cartridge.)

The cartridge holds a max of 150 units of insulin, so this is not the pump for people who are on really large doses. But, if you’re like me, it’s way, way more than enough for the three days the cartridge lasts.

The ‘consumables’ combine the ‘cap’ for for the pump as well as the cannula/infusion set and cartridge.

Other features that may be of interest: it’s waterproof. It has a built in activity tracker, which for those who are interested in doing activity (i.e. not me), then this may be a super useful little tool; it’s rechargeable, so no need to carry around a spare battery. (You swap over the pumps every three days, charging one while wearing the other.)

I’ve not used the pump, so I can’t really talk about what it feels like or how easy the handset is to use, but I did play with it a bit the other day and it appeared super easy.

I can talk about the fact that there is about to be another pump on the Australian market, and considering the sad state of affairs at present, I see this as a really positive move. I have always been an advocate for choice. People with diabetes should be offered a smorgasbord of diabetes management options and then be able to customise the devices, drugs and plan that works best for us at that moment. It’s not a static arrangement (because, diabetes isn’t a static health condition) and we should be able to change as we need.

With the current situation, we don’t have a smorgasbord. Instead, we have a very limited set menu that seems to be getting smaller and smaller, and while that may be great for the big players in the market, it is crappy for people with diabetes.

Cellnovo introduces another option that may just be the right choice for some people, and that’s terrific.

WANT MORE?

For more information about Cellnovo click here.

In Australia, the Cellnovo pump is being distributed by Medical Specialties Australia. For details, click here.

 

DISCLOSURES

None! Although Aaron did buy me a coffee …  And when there are pumps available in Australia, I may do a trial. As always, I’m writing in my own thoughts in my own (probably swear-y) words.

It arrived in the post back in April: a little package from my pump company reminding me that my pump warranty was due to expire and it was time to start thinking about getting a new pump.

Inside the thick envelope was a shiny brochure with bright pictures of people looking very happy and excited with life, while wearing an insulin pump; the insulin pump the company was suggesting should be my new pump. The insulin pump that has been my insulin pump – the exact same model I trialled for the first time back in January 2013 and have been shoving down my bra for the last four years. Nothing new to offer; no design changes; no software upgrade. Exactly the same pump.

Today, I am walking around with an out of warranty pump. Does this concern me? Well, yes and no. If I didn’t have a couple of old pumps at home in my diabetes cupboard, I’d be far more concerned.

I don’t particularly feel any loyalty towards one particular pump or pump brand. I know that there are some people who are very much Team Pump Company A or Team Pump Company B. My feelings about pumps are they deliver insulin. I know that some have different bells and different whistles, but I just need something that is going to easily and accurately deliver the drug that keeps me alive.

Making the decision four years ago was a no brainer: I was desperate to use Dexcom, so I chose the pump that integrated with it. These days that’s less of an issue because I use G5, so integration with a pump is less of an issue.

To be honest, I’m a little cross. As someone who is clearly a Dtech enthusiast, it’s laughable that I would even for one minute consider committing for another four years to a pump that I have already been using for four years – and let’s remember, it wasn’t new when it arrived in Australia; friends in Europe had already been using the Vibe for a couple of years when we eventually got it here. Can you imagine committing to using the same model mobile phone for eight years?

Plus, it’s worth noting that the look of the Vibe is very similar to the Ping and 2020, both of which had been around for a number of years before the Vibe. The design is well over ten years old and you bet that’s important if I’m wearing the bloody thing 24/7.

My trial last year of the Medtronic 640G, truly the only real innovation in pump technology in recent years, left me cold. I found the sensor accuracy a problem, which negated the excitement I had about the SmartGuard technology. And I found the pump clunky and big, and struggled to get it to fit comfortably down my top.

If I’ve ever understood the reason for the whole #WeAreNotWaiting movement, it is right now. It’s why I started reading up on Loop and ordered what I need to get my own build underway. I’ve not had the time or headspace to actually do anything about it yet, but right now, it’s the only thing that is giving me any buzz about real diabetes tech advancements here and now.

So, for the time being, I’m in pump limbo (which sounds like an cheeky game that happens after a few drinks at a DOC get together, but really is not). I’ll get around to working out if I can manage to get Loop happening and see how I go with that. But I can’t see that there is any likelihood that, unless absolutely critical, I’ll be getting a new pump soon. My PHI will be pleased about that. Even if I’m not.

(Settle down, Mum & Dad…)

I don’t have any tattoos on my body. And I rarely wear medical ID jewellery. How are these things connected?

Well, a lot of people with diabetes have diabetes tattoos, often on the inside of their wrists. Many say the reason they decided to tattoo their medical condition quite prominently on their body is because they don’t like to wear medical ID jewellery, (or don’t want the hassle of remembering to wear it). A tattoo is as permanent as you can get! Once it’s on, it’s on!

I’ve never really been interested in getting a tattoo, and I certainly have never even entertained the thought of getting a medical ID tattoo. This is obviously a very personal decision and I actually really like a lot of the diabetes tattoos that I’ve seen online. But it’s just not something that is very ‘me’. (And perhaps somewhere in this deeply cynical body of mine, a teeny tiny part of me that things maybe, perhaps, possibly there will be a cure for diabetes in my lifetime. And that unicorns exist.)

I do try to make an effort when I am travelling alone to wear my medical ID bracelet that I bought from a number of years ago. But the truth of the matter is that I very, very rarely do. Call me vain or shallow (guilty, guilty), but I don’t like the look of most medical ID jewellery, and even more, I don’t like looking down seeing a constant reminder of my medical condition staring back at me. I love wearing bracelets, but one that screams ‘chronic health condition’ is not really what I want to see when I am typing away and hear the jingle jangle of my bangles.

Today on my Instagram feed, this came up:

It’s from Pep Me Up Diabetes Blog which is run out of Germany by my friend Steffi. Steffi is awesome. I’ve met her in person a couple of times now as she’s also part of the Roche Bloggers Group. To date, her business has mostly sold very cool stickers for FreeStyle Libre sensors and scanners. She gave me a couple of stickers last year in Munich and I quite enjoyed sporting this one on my arm over the top of my sensor:

Now, Steffi has broadened her business to include temporary tattoos such as the one showcased on her Instagram feed today, as well as a couple of others which are also fabulous. In fact, if I were to get a permanent diabetes tattoo, I suspect that it would look like one of these:


(The first one means ‘I am greater than my high and lows’.)

I can see the merit of using a temporary diabetes tattoo. For me, travelling alone would be the time that I think it would be most appealing. But there are a lot of other situations that would be great too: music concerts and festivals, large sporting events, or even as a ‘try out’ for a more permanent inking!

I really love this idea – well done Steffi – and it is another example of some truly wonderful and fun things that are going on in the diabetes world by people with diabetes. Do support them if you can!

Want your own temporary diabetes tattoo? You can order here. And Steffi ships all over the world. Even Australia!

GIVEAWAY!

Steffi has kindly offered to send me a couple of tattoos for a giveaway. Want one? Click here and tell me when and why you would use one of these tattoos.

Wait – I think I found an alert bracelet I like! As I was scrolling through the Pep Me Up website, I found this and ordered it!

My A1c came back a few weeks ago in my target range. As soon as I saw the number, I said to my endo: ‘It’s because of this,’ and I gently patted my arm where my Dexcom was sitting firmly, doing its thing.

I was right. Wearing CGM fulltime has allowed me to better understand what is going on with my glucose levels and how they responds to a variety of different factors.

Puppy on my lap and CGM on my arm.

But it’s only part of the picture and the more I’ve thought about it, the more I’ve come to realise it. I’ve been using CGM almost fulltime for four years now, yet this A1c was ‘more’ in-range than any other in that time.

It can’t just be the device.

No, it’s when I add the low(er) carb way I’ve been eating to the equation that the improvement starts to make sense.

The most obvious thing I noticed when I started eating lower carb was that my CGM trace stayed far straighter for far more of the time.

Before I started eating this way, I’d see a lot of spikes. Sure, I’d come back into range after an hour or two, but there was a good while there that I was above range while I waited for the insulin to do its thing with the carbs I’d just ingested. Insulin isn’t perfect; its action can be unpredictable.

Eating lower carb means the spikes just don’t happen as they used to. Of course there are other contributing factors that do cause my glucose levels to head out of range, but by eliminating – or rather minimising – the one that is most responsible has resulted in a significant change.

So, what is that change? It’s all about time in range (TIR).

And that is how I now measure my glucose management. It’s not about A1c – I don’t like averages because they conceal a lot of what is going on. The A1c average might be a pretty number, but what is going on outside that number to get there?  But when I look at how much of the day is spent in range, there is less place to hide. It is starkly clear the days that I am within my upper and lower limits.

And there is a flow on effect from more time in range. When I think about how I feel on the days that I am far more in range than out, I feel better – more energised, more focused, more able to just get things done.

CGM data easily provides me with this data (and flash glucose monitoring would as well) so I can see at a glance just how much of each day is actually spent in my target range. This means that I don’t really care about what my A1c is. It may creep up a little bit, but if overall I am spending more time in range, then I’m happy.

This is just another reason that A1c measurements are flawed. It was first recommended as a way to measure diabetes management back in 1976 and a lot has happened in diabetes since then. I’m certainly not suggesting that we throw it out the window. But I am saying that with new (and some not-so-new) tools to provide even more information – more meaningful information – I certainly am not using it as the only way I to track and measure how I am going.

TIR. I’m calling it the new A1c! (And adding yet another acronym to my diabetes lexicon…)

Want more? This great piece about ‘going beyond A1C’ from diaTribe is a must read.

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