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I travel a lot for work. Day trips interstate for meetings or giving talks are a regular feature in my working week. This week, I’ve had two early morning starts with two separate trips.

I have the airport routine down to a fine art. I arrive at the airport, make my way to the express lane through security, whipping my laptop from my bag, any bangles from my arm and emptying my pocket as I walk. I know which shoes trigger the metal detector and which don’t. I get through and then there is exactly enough time to get to the lounge, grab a coffee and make my way straight to the gate just as the plane is boarding. I sit down, grab what I need from my bag before tucking it under the seat in front of me and usually fall asleep within a few minutes, or read whatever book I’m carrying around with me. From arriving at the airport to being settled in my seat is usually about 20 minutes.

On a recent flight, nothing was out of the ordinary. It was early – I was half asleep as I sat down on the plane. It was still dark outside and I didn’t fall straight asleep as I needed to keep an eye on my CGM trace for a little. I’ve been hypoing out many mornings and I wanted to make sure that I was okay before settling in for the flight.

The temp basal rate I’d set in the cab to the airport had more than done its job and I was not too worried about going low – especially with the milky coffee I’d just finished.

I pulled my pump from my bra and, with the press of a few buttons, turned off the temp basal rate and gave myself a small bolus for the milk. I tucked the pump away again and then checked the Dex widget from the home screen of my phone, confirming the number on my Apple Watch.

I was on autopilot as I usually am when doing these sorts of diabetes chores. Buttons pressed, I pulled my book from my bag and started to read, completely oblivious of my surroundings. The plane took off and I was starting to get sleepy, so I put down the book on the seat next to me.

As soon as the seatbelt sign was turned off, a flight attendant leaned over to me. I was the only person in the row. I looked up and noticed that there were two other flight attendants standing there.

Excuse me, Ms Scibilia,’ she said.

‘Yes. Hi,’ I said, smiling, wondering what was going on.

‘Are you able to please tell me what you were just doing.’

I was confused. I had been reading. I showed the flight attendant my book.

No,’ she said. ‘Before that. You seemed to have some…machines?…or a box?…Down your shirt…? And checking your phone.’ She was searching for the right words to use and it took me a moment to realise what she was asking.

‘Oh,’ I said. ‘Um…I was just pressing some buttons on my insulin pump.’

It was the flight attendants turn to look confused.

‘I have diabetes. It’s how I deliver insulin. I needed to adjust some of the settings and give myself some insulin.’ I explained. I pulled the pump from my top and showed her.

‘I also wear a device that measures my glucose levels and it transmits to my phone….and watch. I was checking the numbers.’

I showed her. And then added quickly. ‘It’s Bluetooth. The phone and watch are both on Airplane Mode.’

‘Oh,’ she said, turning to the two other attendants behind her and quietly repeated what I had just said.

‘Do you have some sort of documentation about having diabetes?’ she asked.

Now I was really confused. This was a quick flight interstate. I never carry my doctor’s letter when travelling domestically and have never, ever needed it before – not at security and certainly not on board a flight.

‘Um…no,’ I said. ‘Oh, wait! Yes! I have a card for the NDSS. Hang on…’ I rummaged around in my bag searching for my purse.

‘Here. This is the card that gets me subsidised diabetes products,’ I said, pointing out the word diabetes on the card and then turning it over to show the information on the back.

She took the card and showed it to her colleagues.

‘Okay,’ she said. ‘I’m sorry. A passenger mentioned they had seen you pulling something from your shirt and they were a little concerned about what you were doing. I’m sorry for troubling you.’ 

I half smiled and said that it was all fine, but I realised I was fighting back tears as I did. Had someone thought that I…? I couldn’t even form the words in my head. What did they think when they looked at me?

I felt really self-conscious for the rest of the flight. I’ve no idea who spoke to the flight attendant. I looked around and noticed that most of the people nearby were on laptops or tablets or checking their phones. Everyone has a device …. What was it about mine that had set someone’s mind to thinking that I was going to do something nefarious?

Are people on heightened alert in the wake of the recent terrible events around the world? Is it general anxiety about devices and suspicious little black boxes? Are people noticing more, watching more, reporting things that ordinarily would be completely overlooked?

Would I notice if someone around me on a plane – or a café or in a park or on the street – was fiddling with a medical device? Maybe, but then I have a sixth sense about it, always looking for a new diabetes best friend in the wild!

I sat quietly for the remainder of the flight, my book open, but unable to concentrate. I read the same paragraph over and over. Diabetes is meant to be an invisible condition, but at that moment, there was a neon flashing sign above my head – an arrow pointing at me announcing that there was something not quite right – and I felt very, very conspicuous and very, very vulnerable. And I didn’t like it one bit.

It’s cold. And rainy. And miserable. And I have a sore throat that is making me whinge. All I want is soup.

Here are some things that are doing their best to brighten my day.

My Apple Watch works!!

Truthfully, my Apple Watch has always worked (both the first and second series watches I’ve owned). But it now finally working exactly how I imagined it.

The Dex 5 app update last week finally, oh finally, integrated with Apple Watches. So now this happens. (And I can stop needing to divide by 18 which is what I was doing after sneakily downloading the US version of the Dex 5 app last year…)

At this stage, ‘followers’ cannot see their friend’s/family member’s glucose readings on their watch, still needing to use the Share app on their phone. (But apparently, this functionality is coming soon).

You could win….

….a year’s worth of Freestyle Libre products. Just by entering this competition. Go!! (Only open to Aussie residents.)

Tell me a story, doctor…

As a huge promotor of listening to and sharing stories about health and healthcare, I was interested in this article from Stanford MedX.

As much as I love hearing the tales of those living with diabetes (and other health conditions too), I also want to hear the stories of healthcare professionals. Why do they do what they do? What drives them? What are some experiences that they always remember or wish they had done differently? What are their challenges and how to they manage the disappointments and frustrations? And celebrate the successes? I want to know these things to better understand what shapes them.

Bakers gonna bake

I’ve loved baking for as long as I can remember. My 30th birthday gift to myself was a firetruck-red Kitchen Aid stand mixer which gets a run at least a couple of days each and every week.

Baking makes me feel good. The predictability of results is wonderful. It allows me to showcase the foods that are in season at different times of the years. Being a regular baker means than anytime friends drop by for coffee, they’ll be offered a biscuit made a day or two earlier. And it means that I can easily give gifts to friends, family, colleagues, neighbours, the guys working on the building site across the road…

This piece in the Huffington Post explores why we feel so good when we bake for others.

Also, I think I need this.

Messed-up basals

I’m desperately trying to tidy up my basal rates which are clearly in need of a good shake up. I started Monday and straight away could see this was going to be a long – and probably painful – process. Watch this space…

#WorldImmunisationWeek

It’s World Immunisation Week this week, which is a perfect time to check if you are up to date with all your immunisations and book into get your flu vax if you’ve not already had it.

After I had my flu shot last week, I foolishly got into an argument with a couple of people who told me they ‘don’t belive in vaccinations’, to which I replied ‘You don’t get to ‘not believe’ in vaccinations. They are real. Vaccinations are not fucking Santa Claus’. Then someone suggested I should get that on a t-shirt, which I just might do. In the meantime. I made a poster, which you should feel free to share with fools.

Cold weather = hot books

With the rainy, grey days and nights ahead, it’s a perfect time to get comfy in front of the fire and get reading. I most sneakily used the ‘ice breaker’ at the Diabetes Advocates Day (#DAdvocatesAU) I facilitated a few weeks ago to get some new book recommendations from the attendees. That list is safely tucked away for …well, for a rainy day.

This weekend I rushed out to buy the book that just won the Stellar Prize (a literary award celebrating Australian women’s writing) and what a delight this book has turned out to be. It’s called Museum of Modern Love by Heather Rose. I’m rationing my reading of it – only a chapter each day; two at the most – to make it last. The writing is exquisite. It’s set in New York and is taking me back to wandering the streets and galleries of my favourite city. And desperately making me want to go back. Do look it up!

New diabetes book coming soon

While we’re talking books, Diatribe’s Adam Brown has written a new book that is due out soon. I’d probably read a shopping list Adam wrote because he is a fabulous writer and I always find something to take away for my own diabetes management in what he writes. So I’m more than a little excited that a whole book of this wisdom is due out soon.

Adam’s book is called Bright Spots and Landmines (with a subheading of The Diabetes Guide I Wish Someone Had Given Me). Generously, e-copies of the book are free – you can register to get yours here when it is launched in the coming months.

Also coming soon (but not soon enough) – new faster insulin

Novo Nordisk has launched its new ultra-fast insulin (Fiasp) into lucky selected markets.

Please can we have some here in Australia?? No news on that as yet…

Health Professional Grant

If you’re a healthcare professional member of Diabetes Victoria, you can apply here for this year’s Gwen Scott Grant.

Trolling is pure evil. Except for this…

Pete Souza was the official photographer for the Obama Whitehouse and took thousands upon thousands of photos during his tenure.

In recent months, he has been posting photos from the Obama Administration that are very clearly trolling Trump, comparing the new Administration’s blunders with the class and professionalism exhibited by Obama and his team. It is very cheeky and just so damn funny. This article explains more.

An honest weather app

And finally, have you installed the WTForecast app yet? You should. It gives authentic and accurate weather updates for wherever you are in the world.

Current situation here explaining current miserable mood:

 

A couple of days ago, I woke up at 5am low and stayed that way until about 12pm when I decided to have a sushi roll for lunch. My thinking was that if white rice didn’t solve this low, nothing would! I’d already thrown a lot at it – juice, black tea with sugar, jelly beans – sitting there watching my CGM trace stay in the red area apart from very occasional and very small rises before dropping back below that comfort line.

The rice did the trick. And then some. I watched the spike as the evil rice did its thing and sent me into the mid-teens. Thanks rice; thanks you very much. (I know, I know…we’re not supposed to think of food as good and bad, but rice is the freaking devil.)

I then watched the spike change direction and start to plummet. I’d done everything ‘right’… dosed at the right time, calculated the carbs, delivered the correct amount of insulin… Rice is my food nemesis. I’ve tried everything and just can’t get it to work which is why I rarely, if ever, eat it. But I was getting nervous at the non-budging CGM lows and knew that rice was a sure-fire way of getting me out of low-zone.

Rice: evil little grains of misery.


Everything fell back into place by the afternoon and then that night, dinner consisted of a low carb meal. The roasted cauliflower, warm salad of broccoli and green beans, avocado and cucumber salad with pepitas, and roast beef barely caused a blip on my CGM graph for the rest of the evening. The tiny bolus that accompanied the meal did its trick and the line stayed in-range and mostly flat. The dark chocolate and cup of tea I had before bed had no effect either.

Before I started using CGM, I had no idea just how different foods truly impacted my glucose levels. Carb counting can be pretty hit-and-miss, but I wasn’t too horrid at it – at least for most of the time.

Doing the recommended four or five checks a day hid most of the truth about what was going on for most of the time. Sure, my glucose levels may have been not too horrid when I checked before meals or before bed, but in between those random checks, there was A LOT happening to which I was completely oblivious.

CGM doesn’t necessarily need to translate to being more limited (or more boring) about food choices. But it does arm us with a lot of information about how our glucose levels react to certain things, which means that we can make more-informed choices about what we eat, and how we eat it.

Using CGM means that I can be much smarter about timings of boluses (and the types of bolus), and even the times I choose to eat different things. I know I am more insulin resistant in the mornings, so it’s a lot more difficult to manage with high carb foods at that time of day. I learnt that delaying my morning milky-sugar-added coffee by just half an hour results in less of a spike.

Of course, we need to remember that food is not the only factor that impacts our glucose levels. CGM has offered great insight into hormonal changes, effects of stress and different meds and eating a certain way cannot guarantee a flat CGM trace.

For the record, THIS is one of the main reasons I use CGM. I get a little tired of the constant focus there is on the technology ‘saving lives’. Do I honestly believe that my CGM has saved my life? Sure, it makes me feel safer – especially when travelling on my own – but for me, the real reason I use it, and its real benefit, is to be armed with information about how to best deal with diabetes.

DISCLOSURE

I probably just should mention that I generally self-fund all my own CGM costs. This includes the $540 I just spent on a new transmitter! When I’ve been given product while participating in trials, or in exchange for speaking gigs, I’ve always disclosed on this blog.  

I also have some very generous friends in the US who have most kindly given me sensors when they’ve had spares. They are wonderful, wonderful people and I am so grateful for their generosity!

On Saturday, Medtronic Australia hosted their first Diabetes Advocates Day. Ten or so advocates from across Australia came together to hear about new technologies and talk about real-life application of technology in our diabetes lives.

There were some familiar faces and some newbies too which is always great to see. I, most opportunistically, used my role as facilitator for the day to get book recommendations from as part of the ice–breaker session. (Truthfully, this is always one of my favourite parts of these events, but it can also be a challenge when the people in the room are all over-sharing bloggers!)

There were a couple of standout moments throughout the day worth sharing.

Melbourne endocrinologist, Professor David O’Neal, gave a great talk on the future of diabetes technology.

David is one of those endos who after you meet and hear speak, you want to make him your endo for life. He is ridiculously tech savvy and his knowledge of diabetes technology is hard to beat. If you Google him, you’ll see that he is a regular contributor to diabetes journals and is involved in a lot of diabetes tech research.

Which is all good and well, but the real reason David is so wonderful is because he completely ‘gets’ diabetes and what technology can actually offer us. As a tech geek, it’s easy to be completely and utterly captivated by the technology, but David readily admits it has limitations.

This is really important to remember. Too often we forget that the tools we have today are not perfect, and cannot seamlessly mimic a fully functioning pancreas. Most importantly, this is not the fault of the person using the tech. David acknowledged both of these points in the opening to his talk.


I really love that David mentioned this because so often when technology doesn’t work the way it is meant to, there is an assumption that it is the fault of the user. We mustn’t have pressed the right button, at the right time, in the right order, with the right calculation.

But actually, the tools are just not smart enough to account for the daily changes and variabilities and inconsistencies that play a pivotal role in life and impact our diabetes. As David said, insulin requirements overnight can fluctuate by up to 200%. There is nothing available at the moment that is equipped to deal with that sort of variation.

Add to that, the effect of exercise, food, stress, hormones, illness or pretty much anything else, and there is no way the tech can keep up – or those of us using it can work out how to factor it all in.

This constant need to makes changes is what sets diabetes technology apart from other medical technologies which are often ‘set and forget’ for the wearer. With diabetes devices, there is no such luxury, which is why we need to remember that often, technology actually adds work to our already significant list of diabetes tasks.

Another absolute gem from the day came from blogger and advocate Melinda Seed. During a discussion about HCPs reticence to deal with PWD’s research online, was her comment (as tweeted by Georgie Peters):

This really is turning the whole ‘Dr Google’ thing on its head. Instead of fearing the internet – and PWD who use it to research and better understand our health condition, surely HCPs could engage to discuss safe ways to do that research. Being part of the solution rather than just fearing it makes a lot of sense.

And perhaps, look at it the way David O’Neal chooses to:

In a roomful of tech-heads, there was also a moment where we considered those who have no interest in using any sort of newer tech available. With the dawn of new hybrid closed-loop systems that take even more control away from the user, how do we make that leap to completely trusting the device? And is this particularly difficult for those of us who identify as control freaks when it comes to our diabetes management?

Affordability and access also came up, reminding me – and hopefully those from the company producing the devices – that this needs to be a consideration at all steps of the conversation. There is no point in developing and releasing onto market whiz-bang tech if people can’t afford to use it. (And we also must remember that as every new piece of tech is released, the divide between the haves and have-nots becomes more and more cavernous – especially when you remember ‘have-nots’ refers to not only the unaffordable tech, but also to basic needs such as insulin…)

DISCLOSURE

The Diabetes Advocates Day event was hosted by Medtronic Australia and was supported by Diabetes Australia. I am employed by Diabetes Australia as Manager of Type 1 Diabetes and Consumer Voice, and attending and facilitating the event was part of this role.

There was no expectation by Diabetes Australia or Medtronic Australia that I would write about the event, and my words here and in other online spaces are mine and mine alone. For more, check out the #DAdvocatesAU hashtag on Twitter and keep an eye out for blogs by other attendees.

Brutal. That’s the way I’ve been describing my week. It’s been super busy and there is no hint that will change any time soon.

But there is so much stuff out there to read. Here’s just some of it…

CGM

Oh, did you hear? CGM is now funded for children and young people under the age of 21 who meet eligibility criteria. It’s been ALL OVER the interwebs, but for the most up-to-date info, go here!

(And yes, I know, people 21 and over need CGM and need support. This isn’t over yet…!)

A psychologist who knows diabetes? Yep!

A good psychologist is worth their weight in gold. A good psychologist who understands the impact of living with diabetes on our overall wellbeing is like a unicorn – rare and magical.

So, I was delighted when someone from my office who has been a Research Fellow with the ACBRD for a number of years came to tell me that she is starting a private psychology practice. Dr Adriana Ventura’s research has focused on the psychological, social and behavioural aspects of living with type 1 and type 2 diabetes.

Adriana understands that living with diabetes (and other chronic health conditions) can be challenging. And she understands that these challenges can make it tough to take care of our health the way we would like.

Details about Adriana’s practice can be found here. (Adriana works with adults and older adolescents – 16 years and over)

Really? REALLY?

Seems that we’ve all been doing diabetes wrong. That lancet thing that we joke about never changing? This is how you use it according to the pic accompanying a BBC Radio 2 tweet.

Apparently it is really hard to do some decent research. (And if the image wasn’t enough of a deterrent, the article looks shit too, so didn’t bother reading it.)

My maths teacher was right

So, as it turns out, I do use maths every single day. Diabetes has certainly put my algebra skills to good use!

This article from The Conversation is all about how an applied mathematician developed an algortithm to help treat diabetes. As you do.

Words that over-promise

I can’t remember the number of times I’ve heard that a diabetes cure is ‘just around the corner’ or any other version of ‘five years away’.

But how do these promises affect people living with health confitions? This article from Medivisor asks just that.

March for Health

While we were celebrating the CGM announcement on Saturday, I was very mindful that my US friends were getting ready to continue their battle for fair healthcare. March for Health was held across the US on 1 April calling for affordable access to quality health care for all people. I don’t know about you, but that doesn’t sound unreasonable to me.

Check out more at the website here.  

And this, by the way, is possibly one of my favourite promotional posters from the March.

Women’s Health Survey … Quick!!!

And while we’re talking women’s health…There are still a few days left to do the annual Jean Hailes Women’s Health Survey, which identifies gaps in current knowledge when it comes to women’s health.

Click here to do the survey.

College Diabetes Network

There are some really wonderful groups out there supporting people with diabetes, and my friend from the US, Mindy Bartleson emailed me with some really useful information about the College Diabetes Network (CDN). The Network empowers and connects young people with diabetes and their are CDN Chapters on college campuses across the US.

The Network is certainly US based, but some of the information will be relevant to those in Australia (and elsewhere). Their resources provide information about how to prepare for the transition from high school to college or university. Do have a look!

Information for students can be found here.  And information for parents can be found here.

Peanut butter cookies

I made these cookies and jeez were they delicious!

They are gluten free, which I know is important for many people. For me, I need cookies that take no more than 10 mins to mix together and then taste perfect. Honestly, they are possibly the best tasting biscuit/cookie I have ever made… and I bake a lot.

The recipe can be found here. (I used smooth peanut butter as the recipe suggests, but I reckon they would taste awesome with crunchy. Also, do pop the mixture in the freezer before trying to shape the cookies. The dough is mighty-soft and sticky, and this step helps to get the dough from the bowl onto your cookie tray. AND DON’T SKIP THE SALT ON TOP!! This is what ties it all together and makes the magic happen!)

And finally……

… a little New Yorker Cartoons funny, which may not be directed at diabetes, but boy it certainly shows how I feel most days living as a diabetes tech cyborg!

The ATTD conference is, by its nature, very technology-centric. This is absolutely not a negative; in fact, it was one of the reasons that I had always wanted to attend because I am such a DTech junkie.

However, as it turns out, it wasn’t the promise of hearing about, or seeing, the latest devices that had me most excited as I perused the program, setting out my schedule for my busy days in Paris.

No, it was this session on the afternoon of the Thursday that really piqued my interest:


I knew we were off to a good start when session co-chair and first speaker, Dr Lori Laffel, flashed this slide up, announcing ‘Diabetes is Stressful’.


Sometimes, there is an assumption that diabetes technology automatically reduces stress. To a degree – and for some – that may be true. For me, the thought of wearing CGM all the time reduces the stress of not being aware of hypos. But it also adds stress with the never-ending, pervasive data data-feed.

There was also this dichotomy that so many of us face:

 

Acknowledgement of the terminology we use was a welcome addition to this talk. I think that at times our expectations are not being particularly well managed with the way technology is named.

Expectations were covered again when Dr Kath Barnard took the stage.


I love that Kath discussed the responsibilities of health psychology researchers when it comes to improving the outcomes of tech. She mentioned the importance of developing and using device-specific measures to assess psychosocial impacts on both people with diabetes as well as their carers. Most important was the point of ensuring robust and consistent psychological assessments in clinical trials to better understand participant experiences. This often seems to be a missing component when it comes to researching technology.

This is a recurring theme from Kath: that the juggernaut of diabetes technology advances needs to stop being only about button pushing and changes to clinical outcomes if their full potential is to be realised.

It’s important to note Kath is not anti-tech – in fact she frequently acknowledged the ground-breaking nature and significant potential of diabetes technologies. But her dedication to individualising technology use for each person with diabetes is her over-riding message.

Overall, the take-home from this whole session was this comment from Kath, which became a mantra for me for the remainder of the meeting: kathbarnard

Next up, Dr Andrea Scraramuzza from Italy explored the human factor in technology in paediatric diabetes, however his talk was relevant to adults too. Human Factor brings together information from psychology, education, engineering and design to focus on the individual and their interaction with products, technology and their environments with the aim of better understanding the connection between human and technology.

I really loved this presentation because it brought home the idea that it doesn’t matter how whiz-bang the tech is, if the education is not right, if human limitations are not considered and if people with diabetes are not willing to learn – or clinicians are not willing to teach – the potential of that tech will never be reached.

The session closed with the always brilliant Professor Stephanie Amiel who spoke about hypoglycaemia – specifically, where to go when the technology hasn’t worked. I thought this was a really sensible way to round out the session because it reminded us all that technology is never a silver bullet that will fix all situations. Sometimes, we need to revert to other ideas (possibly alongside the technology) to search for solutions.

I was really grateful for this session at the conference. All too often psychology is ignored when we talk and think tech. The focus is on advances – and the speed of these advances – all of which are, of course, super important.

But it is undeniable that alongside currently available and still-in-development technology is the fact that there is a very personal aspect to it all. Whether it be considerations of actually attaching the tech to our bodies (unfortunately this wasn’t really discussed) or tech fatigue and burnout, or simply not wanting to use the tech, this is the side of diabetes and technology that needs to be researched and understood because how we feel about using the tech absolutely impacts on the results we get from it.

Well done to Professor Tadej Battelino and the ATTD organising committee for including this session in the ATTD program. It really was most useful and hopefully the HCPs and researchers in the room walked out thinking a little differently. I know that there were a lot of advocates in the room who really appreciated the session – because we always are thinking about this side of diabetes!

I do, however, have a challenge for the organising committee. As excellent as this session was, it could have been even better if they had dedicated some of it to hearing from people with diabetes talk about this issues being discussed by the clinicians and researchers. That would have really brought home the message. Perhaps next year…?

Disclosures

My flights and accommodation costs to attend the Roche Blogger #DiabetesMeetUp were covered by Roche Diabetes Care (Global). They also provided me with press registration to attend ATTD. My agreement to attend their blogger day did not include any commitment from me, or expectation from them, to write about the day or their products, however I have shared my thoughts on the event here. Plus, you can read my live tweets from the event via my Twitter stream.

Routines help me function and help with smoke and mirrors appearances that make me seem an effective adult. Yesterday, my routine was accidentally thrown out the window. And then everything went to pot.

We can blame jet lag. We can blame the frantic running around after getting out of bed late. Or we can just blame me.

My every-morning routine looks something like this:

Step 1. Check my BGL, calibrate my CGM and do an adjustment bolus if necessary.

Step 2. Get out of bed.

Step 3. Rifle through my underwear draw (taking my underwear into the bathroom with me).

Step 4. Shower, dry off, slather on moisturiser, put on underwear.

Step 5. Reconnect my pump, shoving it into my bra.

Step 6. Brush my teeth and don’t return to the bathroom.

And then, for the rest of the day, I am confident in the knowledge that I have my insulin delivery device attached to my body, delivering insulin.

This routine works.

Yesterday, the routine got messed up. I forgot step 3 – I walked straight into the bathroom without my underwear, which subsequently meant that step 5 didn’t happen. And it didn’t happen later as I did the rest of the getting-ready-for-work-and-out-the-door

I drove into the city to the hotel that was hosting the meeting I’d be sitting in for the remainder of the day. First things first, I grabbed a coffee and at that point, I reached down the front of my dress. My bra was empty (well, okay, not completely empty, but there was no pump in there). Startled, I started patting down my body trying to locate my external pancreas – no idea where I thought I’d put it, especially considering I was wearing a very fitted dress.

I felt the nib of the cannula part of the infusion set on the side of my stomach. It was sharp because it didn’t have the disc from the tubing connected.

And then I cursed. A lot.

I weighed up my options.

Option 1: Retrieve my car from the valet parking and drive back through peak hour traffic to collect my pump from home and miss the important first session of the day.

Option 2: Curl up in a corner and cry.

Option 3: Work with whatever was in my diabetes spares bag.

Option 4: social media the crap out of how I am #NotGoodAtDiabetes.

While option 2 was preferred and option 4 was a given, I activated option 3 and set to work.

I’d already been disconnected for about an hour at that stage so my glucose levels were creeping up, almost, but not quite, in double figures. I did some calculations in my head and gave myself a bolus using the syringe and insulin from my spares bag.

And then, every hour or so, I checked my glucose levels and bolused manually as necessary. Obviously, eating low carb was the order of the day (I threw out my morning coffee, not really wanting to have to bolus for the milk and sugar).

By the time I eventually got home in the late afternoon, I was sitting around 11mmol/l – the highest I’d clocked all day. I reconnected my pump, so happy to be reunited.

But geez did I feel foolish.

Last week at ATTD, one of the speakers had a similar experience that he tweeted out, and I spoke with him about it later that day. ‘But the pat down! Didn’t you notice when you did the pat down?’ I said, demonstrating my usual routine (more routines!) of standing at the front door, putting my hands over my body making sure that my pump was where it was, my CGM is secure and doesn’t require more tape and the cursory glance into my handbag to locate my BG meter, phone and diabetes bag.

And then others at the table – mostly made up of people with diabetes – spoke about their version of the ‘pat down’. We all had one.

So what did I learn yesterday?

I learnt that throwing the morning routine out the window (even if not deliberate) is a very silly idea! I learnt that despite sixteen years under my belt of wearing a pump – a device from which I have NEVER taken a break – I can still leave home without it. I learnt that I really, really don’t enjoy injecting insulin throughout the day. I learnt that my diabetes spares bag is the best thing ever. I learnt that I should never take the convenience of my pump for granted.

And most importantly, I learnt that this is something that so many of us do as I was flooded with messages from friends asking if I was okay, needed help and sharing their stories of doing exactly the same thing!

Inside the diabetes spares bag.

Paris was, as always, wonderful. The mild weather, meant it was lovely to walk everywhere. With only three and a half days in one of my favourite cities, I was grateful for the daily 40-minute stroll from the hotel near the Eiffel Tower via the Trocadero to the conference centre so that I at least get to see some of the city.

Even early morning meetings were bearable with views like these. (Hashtag: not photoshopped!)

Sunrise behind the Eiffel Tower.

On my first full day in the city, I attended an event hosted by Roche (all my disclosures are at the end of yesterday’s and today’s posts, as always). The Blogger #DiabetesMeetUp brought together almost 40 bloggers from across Europe. And me.

The day’s activities were a continuation of their event at EASD last year (read about that here), although attendance was expanded to also include a contingent of fabulous women from Italy. It was actually the fourth #DiabetesMeetUp event hosted by Roche with many of the attendees having been to all of them. (There was a comment when I tweeted a photo of the day that the group didn’t look particularly diverse. I’m flagging that here because I acknowledge the privilege in the room. I do think that it is important to ask how better representation can be achieved. The flip side is that the event targets bloggers, so there is already a bias for well-connected and informed people. I have no answers….)  

Just some of the bloggers…

The day was busy and very interesting. I have been an extremely vocal critic of device companies failing to engage with consumers in the early stages of device and software development. It frustrates me no end when I hear of the limited and barely tokenistic engagement undertaken by device companies so Roche’s approach is truly a breath of fresh air.

It was also pleasing that while some of the day was dedicated to showcasing product, there was a lot more than that on the agenda. Plus, all product presentations were an opportunity for the bloggers to provide feedback, plus there was plenty of frank discussion from both attendees and Roche staff.

So, what devices where on show? There was some more about the Roche Insight CGM, mostly about the app that is being developed to accompany the device. When this was discussed at the EASD #Diabetes Meetup last year, there were many suggestions and recommendations about how to improve the app platform. It was utterly brilliant to see a lot of those changes integrated in the new design. Obviously it’s a lot easier to make changes to software rather than hardware, but still this focus on gathering feedback and then making the changes is commendable.

One of the most exciting aspects of the discussion for me was the discussion around the Insight systems alarms, specifically the language being used. Some of the words and phrases were flagged as not being quite right, and there was an opportunity to wordsmith just what language would be used. For example, the term being used was ‘warning system’ and I questioned if that was really the best word available. I think of ‘warnings’ as something connected to inclement weather or danger on the roads, not really ideal when thinking about data I use to help manage a health condition each and every day.

Talking language. It was hard to get the microphone away from me.

The customisation of this system is outstanding. Other than the super-low (safety) alarm, all others are fully customisable, can can be activated for certain times of the day, use different sounds for different alarms for different times and the user can build up to ten daily profiles. The objective for such thorough customisation is to work towards reducing alarm fatigue as well as create a more flexible, individualised and intelligent alarm system

As yet, there is still no integration with the Insight CGM and the Insight pump – a criticism and recommendation from the group back at EASD last year, however I believe this is on the radar. Undoubtedly, the feedback from the group was that this is essential, so I hope that the Roche team find a way to make it happen!

The other product that was (very briefly) discussed was the Senseonics Eversense system – a ninety day implantable CGM sensor and data management system. This tech is currently in trial stage and more information can be found here.

Roche gave all the Blogger #DiabetesMeetUp attendees a press pass to ATTD which meant that throughout the remainder of the conference, there was a significant consumer contingent roaming the halls and sitting in sessions. Considering that this is a group of highly connected, tech-savvy and smart individuals, it was terrific that there was the opportunity to be part of the conference amongst the health professionals.

I’m really grateful to have been offered the opportunity to attend the day – a very big thank you to Ute and the team from Roche for extending an invitation to me (I promise, I am not always the jet lagged mess you see at these events!) and for your ongoing commitment to engaging the community. As well as participating in the agenda set by Roche, I was able to speak to some amazing and activists who each day are advocating for people with diabetes in their own countries. The level or excitement and commitment to what they do simply never wanes.

Disclosures

My flights and accommodation costs to attend the Roche Blogger #DiabetesMeetUp were covered by Roche Diabetes Care (Global). They also provided me with press registration to attend ATTD. My agreement to attend their blogger day did not include any commitment from me, or expectation from them, to write about the day or their products, however I will be sharing my thoughts on the event here. Plus, you can read my live tweets from the event via my Twitter stream.

Last week, I spent three and a half days in Paris at the Advanced Technologies and Treatments for Diabetes (ATTD) international conference. It was the 10th ATTD meeting, and the first that I had attended. I have been to my fair share of diabetes conferences both here and around the world, but this one was definitely different. The narrow focus on technology meant that most of the attendees shared an affinity for tech-geekiness.

I was there as part of the Roche Blogger Networking #DiabetesMeetup event, (my disclosures are at the end of this post), which was a remarkable day with about 40 bloggers from across Europe. Lots more about that in coming days.

As I sat in sessions and wandered around the exhibition hall, I found myself becoming increasingly uncomfortable. The combination of being enthused, enthralled and excited (alliteration!!) at new tech and treatment advances sat trickily alongside nagging and constant reflection about the categorically un-level playing field that is diabetes around the world.

How could I happily be sitting there, hearing about automated insulin delivery devices, the value of CGM use, implantable CGM sensors that last for 90 days and big data when I had just spent weeks imploring people to donate to Spare a Rose, Save a Child? I am an ambassador for Insulin for Life Global and despair at the thought that people are dying because they can’t access insulin. And even in first world countries, access to insulin is, for some, not a given, and the thought of accessing the sorts of technologies I was hearing about may as well be a fairy-tale.

The divide between those of us in the room – those able to use the technology – and those for whom access to any sort of diabetes tech was gaping and seems to be getting bigger by the minute.

Fabulous Professor Alicia Jenkins with Annie Astle and me.

Fabulous Professor Alicia Jenkins with Annie Astle and me.

I walked out of a brilliant session about automated clinical decision support systems. It was morning tea time, so there was a break in sessions and I thought I’d find a quiet corner to try to get my head straight about how I was feeling. I looked up and there was Professor Alicia Jenkins. I knew that she was just the person to help me sort myself out!

Alicia is an Australian endocrinologist. She is a remarkable clinician, researcher and one of the best presenters on diabetes I have ever heard. Plus, she is a lovely, lovely person. Alicia is also the President of Insulin for Life Global.

I mentioned to her how uneasy I was feeling and she agreed, but with typical (and welcome) Alicia reflection, she helped me find some perspective. She reminded me that most people at the conference are very conscious of the divide, and that even while talking about the latest advances, there was still a lot of talk about access and reimbursement. There was acknowledgement that the divide is real and needs to be addressed. I looked at her – someone who is such a huge advocate for, and expert in, technology and new treatments – and realised that, actually, we can be across both aspects of diabetes care; that just because we are excited about the latest (and expensive) technologies doesn’t mean we don’t care and want to do something to help improve access of basic diabetes supplies.

By the end of the conference, on the very long trip home, I kept thinking back to our conversation. I realised that as much as it would make things simpler, I just can’t compartmentalise my own diabetes situation and how I feel about access for others. I struggle with this, because one of the really important things for me to have done all the time I’ve worked in the diabetes space has been to separate my own experience from others’.

But in this instance I can’t just leave it at ‘this is my experience and this is someone else’s’ and I think that may actually be a positive. I do find it uncomfortable. I feel guilty that I can afford and access whatever I need when so many cannot. I feel it in Australia amongst my peers and I feel it when I read about those in other countries. (Really, you should read the brilliant profiles T1 International are sharing at the moment, which give a beautifully (and sometimes harsh) personal perspective to access issues.)

I struggle with my privilege and have a constant feeling that I am not doing enough. But these feelings are a good thing. Because I can always do more. I SHOULD always do more.

I will never stop writing about these issues here and elsewhere, or talking about them. I will keep putting my money where my mouth is, because words are not enough. And I will keep advocating, using my voice and working with people trying to make a difference, until there is no difference at all between what we can all access.

Because it’s still February, I would like to urge you again to please, if you can, make a donation to the Spare a Rose campaign. For the cost of one rose (about AUD$6), you can provide insulin for a month to a child in a developing country. (Also, I should mention that last week, I was invited to join the Spare a Rose, Save a Child team; an invitation I accepted immediately.)

Disclosures

My flights and accommodation costs to attend the Roche Blogger #DiabetesMeetUp were covered by Roche Diabetes Care (Global). They also provided me with press registration to attend ATTD. My agreement to attend their blogger day did not include any commitment from me, or expectation from them, to write about the day or their products, however I will be sharing my thoughts on the event here. Plus, you can read my live tweets from the event via my Twitter stream.

I was rushing around the house getting ready – nothing unusual, nothing strange. I was talking to Aaron and the kidlet, and we were making plans to grab a coffee before really starting our day.

I walked into the bedroom and reached into my bag for my meter. I needed to silence the calibration alarm that had, for about the last hour, been reminding me that it was time to check my glucose level and enter it into my Dex app.

I sat on the edge of the bed, inserted a strip into the port and primed my lancet for use. As I pushed it against the side of my finger, I froze.

My breathing quickened and I could feel my heart rate also speeding up. My hands were slightly trembling.

I put everything next to me on the bed, shaking out my hands, as though I was trying to dry water from them.

I took a deep breath, tried to refocus, and picked up everything again.

Reinserted strip.
Lancet still primed and ready.
Finger waiting for sting.

Nope; couldn’t do it. My right hand, which was holding the lancet, just refused to do what my brain was telling it to do. It was frozen. The thumb was poised on the release button at the side of the lancet, but refused to add the required pressure to fire the needle through my skin.

I suddenly flashed back to a session I had done years ago with first year med students where they were all asked to check their BGL and give themselves a saline injection to their stomachs.

I remembered that there were a small group who seemed paralysed when asked to stab themselves. And I remembered the young person I had sat next to, gently coaxing them to have a go while secretly thinking they were being pathetic and should just bloody well get on with it.

Right then, I felt pathetic. Why couldn’t I just bloody well get on with it? I’ve have jabbed my finger thousands and thousands of times and never, ever frozen up like this – not even the first time I did it almost 19 years ago.

I put down my kit and walked out of the room. I went into the kitchen, grabbed a glass of water and drank it down. I walked out into the back garden, watered the lemon and cherry trees, inspecting all their new growth, proud that we hadn’t killed either of them. Yet.

The dogs were running and jumping around me and I reached down to pat Bella, and then sat down for a moment, raising my face to the sun and letting the sunshine warm my skin. My breathing had returned to normal.

I sat there for a while and then went back inside, continuing to get ready. Once organised, I threw everything I needed for the day in my bag – included my meter – and headed out the door, and we walked to our local for a coffee.

We ordered, and mid-conversation, I reached into my bag and subconsciously readied my meter and lancet again: auto pilot firmly on, brain not fully engaged. I heard a click as the lancet released and saw the drop of blood, quickly squeezing it onto the waiting strip.

I focused. The number came up. I entered it into my phone. And put away all my equipment into my bag. Where it waits for next time. And the next.

And the next.

This is Bella (from a few months ago when she was in need of a haircut).

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