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(Hat tip to Professor Tim Skinner for the title of today’s blog post.)

In an effort to terrify the bejeezus out of healthcare professionals get the word out about Loop and OpenAPS to a group of diabetes healthcare professionals, I decided to work my Loop story into my talk at last Friday’s #ADATS meeting. I was a little nervous about it, but being on the ADATS Committee, and recognising the name of the conference – Australasian Diabetes ADVANCEMENTS and TECHNOLOGIES Summit – I knew that there was no way I could talk about the latest diabetes tech advances and not talk about the DIY movement.

To set the scene, I started with the old chestnut of showing how far diabetes technology has come:

Then showed a slide with all our shiny new tech:

But then I stopped, and changed the slide a little, leaving the same photos, but altering the title to ask a question:

And then, I showed them what cutting edge diabetes tech really looks like:

I used the next slide to explain how I drive my Dtech these days, and how my iPhone and Apple Watch are part of my diabetes tech arsenal.

‘So…How many of you know about OpenAPS or Loop,’ I asked. Very, very few hands went up.

What about Nightscout? How many of you know about, and understand,d Nightscout?’ A few more went up – but really not many.

I nodded my head, completely unsurprised.

Then I told the audience I’ve been using Loop for almost three months. I explained how I ‘hacked’ an insulin pump, ‘became an app developer and built an app’… and now, my basal insulin is fully automated. I showed a screenshot of the app, and pointed out the dozens and dozens of small basal rate adjustments automatically made every day.

I explained how much better I feel, how much more time my glucose levels are in range and how I simply wouldn’t be without this technology now. I told them how I now wake up feeling that I can move mountains because night after night after night my glucose levels remain in a flat, straight line thanks to those micro basal adjustments, and I wake to a number that ranges no more than between about 5mmol/l and 5.8mmol/l.

‘How many of you are a little scared by this?’ I asked and waited. Hands shot up; many heads nodded. I waited some more, shrugging my shoulders a little.

‘This isn’t the scary future,’ I said. ‘It’s not dangerous, futuristic or downright terrifying – which is what I’m sure some of you are thinking. This is happening here and now. There are two other people in this room using one of the two systems and there are probably around thirty people across Australia who have started using one of them.

‘And if you are a healthcare professional working with people with diabetes, it makes sense to be aware of these technologies. Also, Nightscout has been around for a number of years now. It’s really not okay if you are working with people with diabetes and you don’t know about Nightscout…’

I know that my talk received a mixed reception. There was a lot of nervousness from some of the device company reps in the room – especially the maker of Loop-able pumps. Some HCPs were simply aghast and did nothing to hide their feelings, one person telling me that I was being irresponsible doing such a thing and even more irresponsible talking about it.

But others were far more interested. The rep. with type 1 diabetes from a device company who announced at the end of the day that he was ‘going home to hack his insulin pump’ was obviously interested. As were a number of other people with diabetes in the room. A couple of HCPs spoke to me about my experience, and one told me that he knows someone in the process of setting up Loop.

But mostly, there was nervousness and shock that not only is this happening, but that there are step-by-step instructions online so that anyone can get onboard. ‘You mean that ANYONE can access the instructions? For free? So any of my patients could do this if they knew about it?’ asked one endocrinologist while a diabetes educator he works with stood behind him sharing his horror. ‘Yep!’ I said cheerfully. ‘It’s all open source. No one is trying to make a buck out of this. It’s for everyone. Isn’t that fantastic! They didn’t share my enthusiasm.

Here’s the thing…I wasn’t (and am not) for a moment suggesting that it is the role of HCPs to start recommending this technology to the PWD they see. But it is naive of them to deny it is happening, or that the only way people with diabetes will find out about it is if their HCP mentions it. Also, I’m not recommending that everyone with diabetes should find a suitable pump and start Looping. I’m simply sharing my story – which is what I have always done here on this blog, and elsewhere as a diabetes advocate.

The title of this blog post came about when I mentioned the mixed reception a little later on in the day. I was sitting with three others at ADATS (who I knew would be sympathetic), and psychologist Tim Skinner commented that one of the reasons that HCPs might be so uncomfortable is because I am going beyond simply not following their directions of how I should be managing my diabetes. ‘You’re actually being a deliberately non-compliant diabetic,’ he said cheekily (Tim was one of the authors on the Diabetes Australia Language Position Statement, so he knew the response he’d get from me using such terminology). ‘This is a lot more than simply being ‘non-compliant’. You have actively hacked a diabetes device and are using that to change the way you are managing your diabetes. Deliberately non-compliant!’

He’s right. I never thought I’d wear the term ‘non-compliant’ as a badge of honour, but right then and there, I kind of was.

Even my t-shirt is deliberately non-compliant. (You can get your own by clicking on the photo.)

 

LOOP!!! I know you want more info. You can read my last couple of posts about my experience here and here, but the full details, continually updated by the brilliant Loop and OpenAPS brains trust can be found here. Read them. Also, you may want to join the (closed) Looped Facebook group. And if you are in Australia, we have our own (closed) page dedicated to local issues at Aussie Aussie Aussie. Loop, Loop, Loop. (And just a reminder – no one can build your Loop system. You have to do it yourself, but it is actually super easy once you have all the components.)

Disclosure

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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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.

My blog break was completely unplanned, but once EASD was over and my family joined me in Lisbon, I knew that our next three weeks together would be completely dedicated to chasing the sun, relaxing, eating, wandering through art galleries, napping in the afternoons. And not writing.

I thought the best way to get my writing chops back would be to share some pictures. Because pictures tell a thousand words, which means I won’t have to write many!

So, here are some photos. With tenuous links to diabetes…

Fab event (as usual) by diaTribe at EASD. And this slide is just so damn on point and why I keep harping on about time in range rather than A1c:

We’ll title this photo ‘As if’. Or ‘Pffft”:

Wandering the streets of Lisbon, I found a shop that I wish was a real pharmacy:

Smart advice found in Lisbon. In my hands is the best chocolate cake I have ever eaten:

Also in Lisbon, this #LanguageMatters gem printed on the window of a water-side restaurant:

All day, every day. With thanks to Finn:

This is what happens when the sun is bright, all day is spent wandering around. And a Dexcom is firmly affixed to my upper arm….

It appears that Loop has broken my diabetes:

It’s important to visit family when visiting other countries. Thanks to CEO Chris Askew for the great catch up:

We visited Cheddar, went to an ice-creamery and discovered their ice cream has diabetes:

And finally: tribe.

DISCLOSURES

My flights and accommodation costs to attend EASD2017 have been covered by Roche Diabetes Care (Global). Yesterday I attended the Roche #DiabetesMeetup (more on that to come). Roche 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.

Our holiday following EASD was funded by my family’s dwindling bank balance. 

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!

I flew into Lisbon, arriving at my hotel just after midnight on Monday. I get that Australia is a long way from everywhere, but the 38 hours’ transit was a record for me and as I tumbled into bed, I dreaded the alarm that would sound a mere 6 hours away.

However, I’ve done this enough times now to know a sure-fire way to overcome jet lag is to organise a relatively early morning meeting that involves coffee and local pastries. (Hello, Pastelaria Versailles and thank you for your beautiful baked goods.)

The main reason for this trip was to attend the Roche #DiabetesMeetup. (Disclosures? Yep-all at the end of this post….) This is the third one of these meetings I’ve attended (read about the first one at EASD2016 here and the next at ATTD2017 here) and, as always, it was great to see the familiar faces of dynamic diabetes advocates doing dynamic diabetes advocacy.

This year, there were a whole lot of new faces, with over 60 diabetes bloggers from across Europe having been invited to become part of the conversation. As well as attended the dedicated satellite ‘consumer’ events, the bloggers are all given press passes to attend all of EASD.

This is astounding. It means that it is impossible to walk around the conference centre without seeing other people with diabetes. Arms adorned with CGM or Libre are not startling – they’re everywhere. The beeps and vibrations of pumps can be heard in sessions, causing heads to bob up, and knowing glances to be shared. Our presence here is undeniable.

On the first official day of the EASD meeting, the third annual #DOCDAY event was held. While Bastian Hauck (the event organiser) starts by inviting bloggers to the event, he warmly and enthusiastically extends the invitation to HCPs and industry too.

On Tuesday, the room was full of people, discussion and enthusiasm

#DOCDAY has become a platform for anyone who attends to take the stage, and five minutes, to share what they’ve been up to in the diabetes advocacy and support space. I stepped down from my usual language soap box, proving that this pony does indeed have more than one trick.

Instead, I spoke about the role of people with diabetes at diabetes conferences. I couldn’t think of a more appropriate time, or a more suitable room to plead my case, even though I knew that I was preaching to a very converted choir!

Two weeks ago, in Perth, there were a few of us wandering the #ADSADEA conference as part of the Diabetes Australia People’s Voice team. And at one point, on Twitter, where our presence is felt more than anywhere else, an interesting, frustrating and downright offensive (if I’m being honest) discussion started.

It was said that diabetes conferences are the safe place of diabetes healthcare professionals and that perhaps a day at the start of the conference could be dedicated to people with diabetes, but the delegate program (delegates being only HCPs) start the next day.

As you can imagine, that didn’t go down too well with some of the diabetes advocates in attendance.

I am actually unable to provide you with the arguments offered as to why people with diabetes should be excluded, but I think it included reasons such as HCPs need a space to be among peers, these are scientific conferences, HCPs need lectures without people with diabetes (not sure why – are we really that terrifying?).

I’m not into preventing people with diabetes attending diabetes conferences. Melinda Seed’s vision of 1000 people with diabetes at the conference is far more aligned with mine. We are not asking that the conference we ‘dumbed down’. I don’t want the sessions to be any different than they are now (with the exception of having PWD as part of the speaker list – but that is regardless of who is in the audience).

Here’s the thing. Organising a team of three consumers to attend (as happened in Australia) required someone to provide funding and coordination. That was Diabetes Australia and I’m really proud that the organisation I work for created this initiative.

To have over sixty advocates supported takes a commitment. I won’t for one moment suggest that I am naïve enough to believe that we are part of industry’s marketing strategy. But we absolutely should be part of that strategy. I am more than happy to give Roche the shout out and kudos they absolutely deserve for bringing us all together. I don’t use any of their products at the moment (although, in the past have used their meters), so I’m not in any way spruiking their devices or suggesting you go and update your meter with one of theirs.

But I am grateful that as part of their engagement with people with diabetes involves bringing us together at a diabetes conference.

What’s the role of people with diabetes at diabetes conferences? Our role is to share from inside with those not here. We’re here to remind attendees that using language that diminishes us and our experiences and efforts in living with diabetes is not okay. We’re here to tell industry they’ve messed up when they design is not spot on, or their marketing misses the mark. We’re here to challenge the idea that we should be quiet, ‘compliant’ and do what we are told.

As I said at #DOCDAY, we have a responsibility to share what we learn. I acknowledge – every single minute of every single conference day – that I am privileged to be here. And that comes with responsibility to share what I see, hear and learn.

DISCLOSURES

My flights and accommodation costs to attend EASD2017 have been covered by Roche Diabetes Care (Global). Yesterday I attended the Roche #DiabetesMeetup (more on that to come). Roche 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.

This years European Association for the Study of Diabetes annual meeting officially kicked off today. And in amongst the full day of sessions was the third annual #DOCDAY event. Here I am talking very fast, trying to say all I want to before the room fills up with advocates from all over Europe (and the token Aussie), plus a heap of HCPs who were keen to learn more about what this diabetes online (and offline) community thing is all about.

I’m mostly on Twitter this week, so do follow along at #EASD2017

DISCLOSURES

My flights and accommodation costs to attend EASD2017 have been covered by Roche Diabetes Care (Global). Yesterday I attended the Roche #DiabetesMeetup (more on that to come). Roche 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.

Last week, I was invited to speak as the consumer in a peer support symposium at ADS ADEA. My talk was called ‘People like me’ because more and more, I’ve come to understand that the real value for me in peer support is the combination of the masses with diabetes – as accessed through the DOC – as well as those who form a part of my ‘inner circle’, or tribe.

So, obviously, my first slide was this one:

And then, I introduced the audience to my tribe from last week:

People like me! The #DAPeoplesVoice Team (L-R) Ashley, Melinda, Renza, Frank

The peer support symposium was coordinated by the ACBRD. Last year, they produced this report for the NDSS. They brought together four speakers, each speaking about different considerations of peer support.

After I gave my personal perspective on the peer support that works best for me, Professor David Simmons from Western Sydney University spoke about the evidence. The idea (as outlined in the symposium abstract) was to ‘…identify ways in which they are in synergy and/or tension with one another’.

David began by speaking about the Peers for Progress model, highlighting its four core functions of peer support:

  1. Assistance in daily management
  2. Social and emotional support
  3. Linkages to clinical care and community resources
  4. Ongoing support, extended over time.

I can only speak for myself and my own experiences, but the peer support I have carved out for myself meets all these points. While points 2 and 4 are probably the most relevant to me, I certainly have used my peers to assist with the day-to-day grind of living with diabetes and have also found connections with clinical support through my peers.

My experience is certainly not structured or formal in any way, however, for me, it works and it works superbly. Which was another point that I made – we need to find the right sort of peer support and that may be different for different people.

Some PWD may prefer to have something that is very organised. I prefer a more ad hoc, dip-in-and-out-as-I-need-it approach, and focus my energies on what I require at specific times. I also love the online community and the support it offers because it meets many of the things I’m looking for: flexibility (there’s not a meeting on the first Monday of each month to attend and if I can’t make that, I miss out); broad reach and a variety of people (which means that I will always find someone to provide support, no matter what the issue; diversity of experiences so my own understanding of what is going on with others is constantly growing, evolving and, often, challenged; all over the world allowing me to connect with people whatever the day of day – or wherever I happen to be (speaking of which…anyone in Lisbon next week?).

Another discussion point during the symposium was to do with the need for evidence to strengthen the case for peer support, which will ensure adequate funding to run programs. I find this a slightly double edged debate, really. I understand that with limited funding, those holding the purse need to know that money is going to go to programs that are known to work. But equally, I know peer support works. People with diabetes know peer support works. Melinda Seed, clearly frustrated (as am I) at the constant need to defend the value and importance of peer support, posed an interesting question, here:

Now, I don’t doubt for one moment that HCPs get a lot of benefit from attending diabetes conferences. Of course they do – they hear from leading experts, learn about the latest research finding, network with colleagues, speak with industry about new diabetes technologies and treatments. The leave feeling inspired, have improved knowledge, feel supported by others doing what they are doing, and have new tips and tricks up their sleeves top improve their practice. They know that. We all do. And yet where is the evidence to support it?

(For the record, someone did point out on Twitter to Melinda that the difference is that conferences are privately funded and therefore do not stand up to the same scrutiny that programs seeking public funding do. Melinda responded (quite correctly) that this argument doesn’t really hold water as many attendees there attend on the ‘government dime’. It is an interesting discussion….)

I think one of the problems we might have is that we narrow the definition of peer support sometimes, and perhaps some people think that it’s too fluffy and feel-good, and just about sitting around someone’s kitchen table and chatting. But as I said in my talk, there is much more than mere ‘tea and sympathy’, (although, I’m reticent to dismiss the power of such interactions because I know that sometimes those moments do produce a lot of support from people who are otherwise feeling very isolated and alone.)

I am speaking at the World Diabetes Congress at the end of this year and will be challenging the notion that peer support is all about group meetings. It is more than the traditional ‘support group’ model. One example I gave was the Pumpless in Vienna story (yeah – I’ll tell that whenever I can!). It was through peer connections that my friend Jo found a pump. It can also be seen and found in other ways – camps, information sessions, structured education programs. Peer support can be found in a lot of places, even if that’s not the term we give to it.

CEO of Diabetes Australia, Greg Johnson, and me talking peer support after last week’s symposium.

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.

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.

I’m Perth-bound for the 2017 Australia Diabetes Society and Australian Diabetes Educators Association Annual Scientific Meeting – or, ADS ADEA ASM, or #ADSADEA2017.

For a week, diabetes health professional experts come together to share the latest and greatest of diabetes in Australia. And this year, I’m so excited that there will be a contingent of diabetes advocates on the ground, tweeting and blogging from sessions.

This is a Diabetes Australia initiative and the idea is to provide as much insight and coverage of the goings on at the meeting from the perspective of people with diabetes for people with diabetes. I’m in great company and the three other bloggers will provide their own unique viewpoint and reports of the meeting. The program is diverse, busy and interesting and it will be great to have a number of people with diabetes at the meeting sharing their thoughts of what’s being presented.

So, who’s on the ground? Melinda Seed from Twice Diabetes, Ashley Ng from Bittersweet Diagnosis and Frank Sita from Type 1 Writes. You can find us at our usual haunts (i.e. our respective blogs) as well as on Facebook and Twitter.

I’ll also be at the Roche Educators Day tomorrow, where I have been invited to facilitate a session made up of people with diabetes (Ash and Frank will be there), sit on a panel as the ‘here’s one we prepared earlier’ alongside diabetes healthcare professionals, and wave my hands around while talking diabetes and language in a session with Professor Jane Speight.

Later in the week, I’m talking about how peer support is a critical component in my diabetes managed in a Peer Support Symposium coordinated by the ACBRD.

Other things I’m excited to see:

  • Ann Morris, ADEA Diabetes Educator of the Year, will be giving her award lecture on Friday which is one of my conference ‘must-sees’. Ann is a dear friend and true champion of people with diabetes. I’ve been honoured and privileged to work with her over many years and I can’t wait to hear what she has to say.
  • The launch of the new Diabetes Australia Self-Monitoring of Glucose Monitoring Position Statement.
  • New tech in the expo hall… (hello Cellnovo!)

And possibly the thing I am most interested to see is if Loop will be able to combat and overcome Conference Hypo Syndrome.

It’s going to be a busy week! Follow along at #ADSADEA2017 and for comments from the ‘consumer reporters’ follow #DApeoplesvoice. You can follow the Roche Educators Day happenings at #RED2017.

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.

On Monday and Tuesday of this week, I attended and facilitated Abbott Diabetes Care’s #Dx2Melbourne event which brought together eleven Australian diabetes bloggers. (All my disclosures can be found at the end of this post.)

(Just a recap – the DX (or Diabetes Exchange) series of events have now been run about half a dozen times. Other than #DX2Sydney and this year’s Melbourne events, the others have been held in hard-to-take cities including Stockholm, Berlin and Lisbon and have been attended by bloggers from the UK and Europe.)

#Dx2Melbourne reunited most of the bloggers who attended last year’s event, with some new faces thrown in for good measure. I was introduced to Alana Hearn for the first time, finally got to meet diabetes yoga guru Rachel Zinman, and caught up with Helen Edwards. (All the links to the blogs of the ‘repeat offenders’ who attended #D2Sydney can be found on this post.)

Some may believe that I am naïve in saying this, but the event is not about product. In fact, apart from a 45-minute presentation – the session that kicked off the two days – there was no other discussion about Libre or any other diabetes product unless it was specifically raised by one of the bloggers. Abbott did not have a new product to push; Libre has been out for over 12 months now in Australia.

(I am not, however, naïve enough to think that events like this are not part of the health industry’s 21st century marketing strategy. But, as I said last year when responding to a comment on my blog about this, this is the 21st century marketing. And I’m glad that consumers have a place in this strategy, because it would be far worse if industry was continuing with 20th century marketing strategies which completely excluded people with diabetes, and did not offer us any opportunity to directly engage and work with industry. Any device company NOT doing this is falling way behind and needs to catch up.)

As the Abbott team stated in their welcome, the idea of the DX events is to continue their commitment to bring together people living with diabetes to share ideas. And for Abbott to get an idea of what it is that is important to people with diabetes and what makes us tick – albeit a very select and privileged sample of advocates.

With this in mind, for me, the most valuable part of the event was the discussions that were completely driven by the bloggers. In an open session where we were exploring ‘why we blog’, I listened carefully as everyone articulated their reasons for going online and sharing their stories with strangers.

Reasons varied – some do it because they simply want to tell their story, some because they love to write, some have specific issues within diabetes they want to open up for discussion, some see it as an advocacy platform. What we don’t hear – ever – is anyone saying ‘Because I want to make money doing it’.  I can be all evangelical about it and say it’s because we’re a choir of angels, but mostly I think it’s because we’re smart enough to know the limitations of what it is that we do, as well as understanding the strength is in connecting, not money-making.

We also considered the shortfalls of having an online presence.

I’m an over-sharer and I know that there is a lot I write that many others wouldn’t feel comfortable sharing – and some people have told me that it is sometimes difficult to read. I also write about issues that are of no real concern to others, and they are more than happy to let me know that I’m wasting my time and energy on such irrelevant (language) matters. I also know that as soon as I put something out there, I am opening myself up for comment – both positive and not-so-positive. We had a discussion about how we manage unwanted attention and, in the most extreme cases, trolling.

I have never regretted anything I have written or shared, and have never taken anything down because I’ve felt it was too personal. But I have had some very unwelcome and sometimes nasty comments sent my way.

I found this a really useful, but somewhat challenging, discussion. I have written about some very personal experiences, probably most notably, pregnancy loss. I’ve also written a lot about how diabetes impacts my mental health. These are two topics that are frequently hidden away, surrounded by shame and secrecy – precisely the reason that I am committed to writing about them.

However, the times I’ve been trolled – and fortunately, that hasn’t been often – it has been when I’ve shared very personal stories. They’ve been the times where I have found myself at my most vulnerable, and being so exposed makes any sort of negativity harrowing.

It was reassuring to discuss – and remind each other – that even though we are voluntarily putting ourselves online, we are not inviting people to be nasty and disrespectful. Online is real life, despite what some people may think. This is the space where many of us convene to work together, support each other and share information; it’s not a place for personal attacks.

I left the event on Tuesday feeling utterly exhausted, but also filled to the brim – a feeling that only comes after spending a solid period of time with others treading the blogging and advocacy boards. I was reminded of the similarities as well as the differences we experience living with diabetes. I felt buoyed by the various issues that draw our attention. I felt desperate at the access issues I still hear about – both here in Australia and overseas. But most of all I felt part of something that is much bigger than me, much bigger than my blog and much more powerful that anything I can do on my own.


DISCLOSURES

Abbott Diabetes Care covered all my costs to attend #Dx2Melbourne, and provided all attendees with two FreeStyle Libre sensors and, if requested, a scanner. There was no expectation from Abbott that I would write about the event or any of their products, and everything I do write about it is my opinion, in my own words, and in no way reflects those of Abbott – or anyone else, for that matter.

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