Diabetogenic

Excluded from power

July 3, 2017 in Awareness, Diabetes, Engagement, Health, Language, Real life | 3 comments

Saturday afternoon I was flaked out on the sofa, the Winter sun shining palely through the front window. It had been a cold day and I’d been dealing with an unpleasant and tedious head cold, so I was enjoying the comfort of the house, a dog snoozing on my feet helping to keep me warm.

I was lazily scrolling through some things that I’d missed on Twitter and I stumbled across a protracted twitter exchange that began with this tweet:

Fair point. And reading David Gilbert’s Twitter feed and skimming through his blog, his commitment to patient-led healthcare is strong. He has a lot of experience fighting for the rights of healthcare users to be true partners in the system.

I was interested in the commentary that followed after Partha Kar, an NHS clinical director, quoted the tweet suggesting that things are different in the diabetes world. You can read that thread here.

I struggled with the exchange, feeling a little discomfort when every point made by the original poster was almost dismissed with a ‘but we are doing better’ comment, which completely and utterly missed the point.

I typed a couple of quick responses, deleting all of them. My head was foggy and I was not sure that my thoughts could be condensed in 140 characters or fewer. But I was trying to say that while I actually agree that ‘patients’ do have very limited ‘power’ and are often actively excluded from processes, that isn’t the point. For me, the discomfort was stemming from someone’s personal experiences being rejected by someone who is actually not in the same position – or rather, by someone who holds a position of responsibility in the very system being questioned.

Let’s reframe it this way. There is a gender pay gap that continues in every industry. Women are significantly under-represented as Company Board Directors, as CEOs, and in politics. Health outcomes for women are worse than they are for men. As a woman, I am conscious of the imbalance; I have fought for equality for as long as I can remember; I see the discrimination; I have experienced the discrimination firsthand.

Are there initiatives in place to try to address these gaps? Yep. Is the situation improved today as compared with 100 years ago? Perhaps. Are there men who are fighting for the rights of women? Of course there are.

But does that mean that women who are affected by the imbalance should have their (our) concerns and experiences dismissed because some are ‘trying to make a difference’? Absolutely not.

It is the same in healthcare. Just because there are some dedicated people steadfastly working to support and deliver a more person-centred, inclusive approach with its foundations in true partnership doesn’t mean that the problems are not still there. And it certainly doesn’t mean that we should stop paying attention to those who speak up about the inequality.

If people are feeling excluded – especially people with 30 years of experience in health advocacy, a Twitter following and a blog – we need to believe people are being excluded.

Just as it is not the place for men – even men who might be unequivocally feminist in their words and actions – to tell women that we need not feel discrimination because there are people committed to levelling the playing field, it is not up to HCPs to question the experience of healthcare consumers when we say we have no power and no ability to influence.

For the record, I agree with David’s original tweet. How much power do healthcare consumers really have in shaping healthcare? How much opportunity is there to truly influence the way the system, activities and programs are designed? In fact, how much of the system, and how many of the activities and programs are co-designed?

If we look at diabetes, how many positions are dedicated specifically to people affected by diabetes on Boards, expert reference groups, working parties, organising committees (etc.)? Can you think of an example when the split between HCPs and people with diabetes was equal?

And finally, a thought on language. The word ‘patient’ was used throughout the Twitter discussion and I believe it is problematic. It’s not a word I use; I don’t refer to myself that way. The Diabetes Australia Language Positions Statement advises against the use of the word because it ‘implies the person is a passive recipient of care, rather than an active agent in his or her own self-care’.

In a discussion about people feeling they have no power, using a word that clearly diminishes the role and involvement of the central person in the healthcare equation speaks volumes. At least I think it does.

Bright Spots and Landmines

June 30, 2017 in Awareness, Diabetes, Food, Health, Real life, Wellbeing | 4 comments

If you can, think back to when you were diagnosed with diabetes. Can you remember much of it?

I can. I can remember almost every word that the endo, diabetes educator and dietitian said to me. I can remember that, in amongst the explanations of what diabetes was all about and how it would impact on my life, there were thinly-veiled threats about what would happen if I strayed from the plan I was being given with the expectation that I would follow it. I remember the rigid ‘my-way-or-the-highway’ instructions about how life with diabetes would be.

But mostly, I remember what was missing. There was no mention about the impact of diabetes on my emotional wellbeing. No one suggested that speaking with peers – others living with diabetes – might provide me with some much need comfort or camaraderie. No one hinted that I might like to do some of my own reading and investigating to come up with my own ideas of how to best manage this chronic condition that had moved into my body, my mind, my life.

No one told me there were options or suggested that I needed to carve out my own path and then work out to navigate it best.

If only I’d had a guide to help me do that – something to give me some ideas that felt more in line with how I lived before diabetes. I wanted something that shared real-life experience about how to make diabetes fit into an already really busy life, and help me be conscious of making healthier choices, but choices that didn’t feel as though they were suffocating me.

Now I have it – albeit 19 years too late!

Adam Brown from diaTribe has written Bright Spot and Landmines which he has sub-headed ‘The Diabetes Guide I Wish Someone Had Handed Me’.

Click on link to be taken to the first chapter.

As I read this book, I started to think about how different those early diabetes years would have been for me – the years before I found my voice, my people and an ability to work out my own way with diabetes.

I could use words such as ‘sensible’ and ‘practical’ and ‘level-headed’ to describe the advice gently doled out in Adam’s book, and they would all be accurate.

But they would be underselling the value of the book.

Adam highlights the landmines – the things we all do to take short cuts – that inevitably negatively affect our diabetes. Often we think these short cuts save us time or ‘fix’ a diabetes problem quickly, only to find that they often turn out to be time consuming and actually end up causing more problems than the original one we were trying to address.

The bright spots are suggestions on how to positively and sustainably live with diabetes. They are easy to manage, and don’t ask for a significant shift in thinking, or large financial or even time investment to make the changes.

The book is segmented into four sections: Food, Exercise, Mindset and Sleep. This makes it super easy to use as a reference book and dive into it to help target specific areas that you want to think about. I’ve read the whole book through twice now, but keep going back to the sleep section, because I realised that it is an area of my life that I really need to address now.

I honestly wish that the day I’d been diagnosed with diabetes I’d been handed this book. I wish I’d had it on my shelf all those years as a resource to refer back to in moments of burnout or no motivation, or when I needed a little push to encourage me. I wish I’d been able to tap into Adam’s wisdom on specific issues when I was struggling with being in a food rut that was affecting my glucose levels, or in a funk because my mind was not clear or focused.

I’m so glad to have it now and have already made some changes which have been very positive. It might be 19 years late to the party, but this book will be on my shelf to be pulled down very, very often.

It doesn’t matter how long you’ve had diabetes; you WILL get something out of Adam’s book. But if you or a loved one is newly diagnosed, I would recommend you stopping whatever you are doing RIGHT NOW and getting a copy. You can buy a paperback copy here, or download the PDF here, naming your own price.

If you would like to win a copy of Bright Spots and Landmines, I can hook you up! Adam generously provided me with some copies when I caught up with him recently at ADA. Just click here and tell me in 25 words or fewer why you would like to win a copy of Bright Spots and Landmines. But chop chop! You’ve only got until the end of the weekend to enter.

Raise your voice

June 26, 2017 in Advocacy, Awareness, Devices, Diabetes, Engagement, technology | 4 comments

One of my bookmarked pages is this:

This is a public page and lists all open consultations from the Australian Government Department of Health.

I know. I live the exciting life.

I have it marked and check the page regularly to see if there are any consultations that are of interest to me and on which I would like to comment. The consultations I respond to are not necessarily diabetes-related, but then, my health is not always diabetes-related…

At the moment, however, there is a very diabetes-related consultation underway and I would encourage anyone affected by diabetes to take a few moments to fill in the survey.

The Department of Health is currently evaluating the FreeStyle Libre, specifically to consider whether it is suitable for subsidisation under the NDSS. (The consultation is happening following a submission to the Department for subsidisation of the product.)

An Assessment Panel will be set up to consider the submission, but before they meet, the Department is seeking comments from consumers and other stakeholders about the product.

You can take part by completely a very short survey. You need to provide some personal details (name, address, phone number and email address). There is one comment box for thoughts for the Assessment Panel to consider. You are asked to think about how diabetes impacts your quality of life; if you’ve used the Freestyle Libre, did it improve your diabetes management; what are your personal experience of using the device and any benefits or negative affects you may have noted; If you’ve not used the device, what would you expect it to do if you did. You are also asked to write about other devices and tools you use to manage diabetes and think about how they benefit your management.

Some things to consider when filling in the consultation survey:

Be honest about your experiences. You don’t have to have used the Libre to complete the survey. This is for anyone who is affected by diabetes and would like to weigh in on whether or not they believe the product should be subsidised.
Stay on topic! This is about Freestyle Libre, so it’s not really the time to say that you want a fully-funded artificial pancreas delivered to your door now please. (And just further to that, it’s not the time to lobby for the expansion of the NDSS CGM Initiative. Comments that are not relevant to the issue at hand usually get ignored. Stay.On.Topic.)
Try to use really clear language and don’t assume the person reading what you have written knows a great deal about diabetes. It’s likely that the Assessment Panel will include people who do know a great deal about diabetes, but the people from the Department conducting the initial consultation may not. So, don’t use abbreviations and acronyms, or jargon and diabetes slang.
This is the opportunity for people with diabetes to have their say. Health professionals are also invited to participate in the consultation, but obviously, their perspective is going to be very different to someone who is actually wearing the device to help manage their diabetes. What you have to say can’t be found in glossy brochures or opinions of those working with diabetes. Use the opportunity to really share your thoughts.
So, your experience about actually wearing the device, the accuracy of it, how it has changed your diabetes management (if at all), why you do or don’t like it, the devices convenience (or lack thereof), the best and worst aspects of it are really, really valuable.

The consultation is open until 17 July and can be accessed via this link. Please share with anyone you think may be interested.

DISCLOSURES

None! I’m sharing this information because I know a lot of people who are interested in this device and because many are frustrated at how expensive it is.

Welcome to the Internet

June 22, 2017 in Communication, Conferences, Diabetes, Engagement, Social media | 9 comments

A lot has already been written about the photo ban at ADA last week. For the first couple of days of the meeting, the first topic of conversation I had with everyone I met was not about what I’d seen or learnt. It was about the photo ban and the ADA’s failure to appropriate deal with the complaints. It was a debacle, an absolute shit storm that could have been addressed in many ways to make it better.

Firstly, it’s worth noting this is not new. Two years ago, I was swiftly reprimanded for tweeting a photo during one of Bill Polonsky’s talks. The ADA bot who was monitoring any flouting of the no photo rules quickly responded to anyone sharing photos on twitter or other social media platforms. The message was strong: stop doing this or your credentials will be revoked. For the record, this was the photo that got me in trouble:

Yes – that photo of Dr House straight from the Internet was the reason that removal of my press credentials was threatened.

This year, execution of the archaic policy was increased to expert level. And people were not happy.

Many were asking why the ADA was being so strident in their enforcement of the policy or, more importantly, why the policy was there in the first place. But it’s not just the ADA. Taking photos or videos during sessions or of posters is banned at the IDF’s WDC, EASD meeting and here in Australia at the ADS-ADEA meeting. (How’s that for a sentence of alphabet soup?)

However, I have never known it to be enforced the way it was last week with a multifaceted approach of vigilant soldiers in red approaching anyone daring to photograph a slide during talks or in the Poster Hall, as well as social media (mostly Twitter) responses being fired left right and centre to anyone who then tweeted a photo.

The ridiculous thing is that anyone at the conference could tweet WORD FOR WORD what the speaker was saying (provided they are a speed Tweeter), but just couldn’t take a photo of the slides. And to be honest, a lot of the speakers were pretty much reciting WORD FOR WORD what was on the slide, so it was possible to pretty much tweet out every single thing being presented. (Also, that makes for a really boring presentation. Don’t do that!)

Suddenly, the story of #2017ADA was not new diabetes research or technology or treatment. In fact, the story wasn’t diabetes at all; it was how pissed off people were at the ridiculous ban.

People trying to follow along from home felt excluded and annoyed. Attendees of the conference felt frustrated that we couldn’t share what we were seeing with those not in the room. As is often the case at these meetings, there were two or three or more concurrent sessions I wanted to attend, but as I’m yet to learn how to be in more than one place at the one time, rely on people in the sessions I’m not at to share what they are seeing and hearing.

And me? I was irritated and exasperated at how difficult it was to follow the #2017ADA Twitter feed because of all the bloody criticism of the photo ban. (And just delicately, those people who commented on EVERY SINGLE TWEET about the ban, you were not helping. You were making it harder.)

I understand that I am very fortunate to attend diabetes conferences both here and overseas and I am conscious that not many people with diabetes are sitting in the audience. I also know – from personal experience as well as anecdotally – the people in the audience are not always the best sharers. When they return from conferences, they don’t sit with people with diabetes to share what they have learnt.

So, as a person with diabetes who likes to share and communicate, I think it’s my responsibility to share as much as I possibly can about what those of us with a registration or press badge are seeing and hearing.

Trying to stop the flow of communication in digital times is ridiculous and it demonstrates an appalling lack of understanding about harnessing digital platforms’ reach to educate, inform and support not only people with diabetes, but also healthcare professionals. It was also ludicrously naïve of the organisation to think that there would not be backlash and that they would get off without condemnation.

The control of information is really not possible in this day and age. A conference about diabetes should not be shut off from people with diabetes, and if the only way ‘in’ for most people is online, then that avenue should be thrown open as broadly as possible.

In two months’ time, the ADS ADEA conference will be in Perth, bringing together diabetes healthcare professionals from across Australia. It is our largest meeting. Currently, on the meeting website, there is this warning in their social media guidelines:

I am calling on the organisers of the ADS-ADEA conference to change this policy immediately, instead, encouraging the sharing of information far and wide. Consider those who cannot afford the time or fee to be at the conference, yet would benefit significantly from learning what is going on. Embrace social media as a way to extend reach from the few thousand attendees (or few hundred in any one session) to a far larger audience. And welcome all diabetes stakeholders to be part of the discussion online.

Just think how much better #2017ADA could have been if that had been the story.

Some excellent commentary on the photo ban at ADA.

Medscape’s piece written while the meeting was happening.

The always thoughtful Marie Ennis O’Connor’s piece for Medium.

And this from Medpage Today.

Language at ADA (part 2)

June 21, 2017 in Communication, Conferences, Diabetes, Language, Real life | 6 comments

Yesterday, I wrote a quick review of the language session at #2017ADA and my excitement as I anticipated the session.

I don’t want to sound Grinch-like, but I walked out of the session feeling less enthused than I had when I walked in. That’s not because the speakers weren’t good. They hit the mark and said all the right things.

And it’s not because I am not excited to see the ADA and AADE developing and getting ready to launch their Language Consensus Statement (it’s due out in August). I am; I am so excited!

It’s because I didn’t hear anything new, and the time has come for us to do something more with language matters. Because, #LanguageMatters.

It was six years ago that Diabetes Australia launched ‘A New Language for Diabetes’ position statement. In collaboration with the Australian Centre for Behavioural Research in Diabetes, Diabetes Australia wanted a concise, easily shareable document that could straightforwardly and succinctly explain how to communicate with and about people with diabetes. Unapologetically, it called out the words that harmed and offered replacements that were more inclusive, less judgemental, all in an attempt to use language that didn’t make us feel like we were constantly failing at life with diabetes.

Six years is a long time in diabetes. Disappointingly, there’s still a lot that’s not great about the way diabetes is discussed in the media, in healthcare settings and, unfortunately, by healthcare professionals. We haven’t reached a position of respect; we have not managed to leave all judgement at the door when speaking about diabetes; we have not even started to eliminate stigma.

When the Language Position Statement was initially launched in Australia, I saw it very much as as first and most welcome step. Was it perfect? No. It was a starting point, not the end of it all.

It was never considered as definitive document, but it certainly a great place to begin; a living resource that could evolve. As the ACBRD did more and more work in the stigma space, it became very clear that words do indeed matter, and Diabetes Australia took the evidence and continued to push the envelope and innovate in this previously unexplored space.

Perhaps that’s not actually a correct statement. Language and words had long been on the radar of people living with diabetes. Diabetes camps had stopped using words such as ‘good’ and ‘bad’ to describe glucose numbers; the debate on the word ‘diabetic’ had been going for years, and many rallied against the words used that blamed, judged and slurred people with diabetes – whether it be for developing diabetes in the first place, or how well we are managing it.

But the Language Position Statement was the first time that it was all there in one neat document, backed by evidence to support the thoughts of PWD. (Jane Speight and I gave a number of talks which started with me ranting and waving my hands around about how language and words affects those of us living with diabetes, and concluded with Jane stepping up to present the evidence. Those talks packed a punch and made it very difficult for people to ignore the issue or to keep referring to it as political correctness gone mad.)

But now, six years on, I want more. I don’t want it to just be a debate about whether or not we use the word ‘diabetic’ (although this is still an important issue). We get waylaid when that is our whole focus, and I feel that anywhere that is just now coming to the language party needs to be a step ahead of the development of a language position statement. That’s been done and has been in circulation for over half a decade. Use it, adapt it, rebrand it and make it your own, but I’m not sure there is a need to recreate the wheel and start from scratch?

Not when there is still a lot more to do.

What’s the next frontier in language and diabetes? Maybe it’s diabetes conferences.

Because, they are a mess, with many presentations still peppered with words such as ‘non-compliant, non-adherent, poor control’, or referring to participants in research as ‘subjects’, and often (and sadly) a not a great understanding of the difficulties of living with diabetes.

With a Language Positions Statement already in existence, a great (and simple!) start to remedy these shortcomings could be for conference organisers to send a copy of it to all speakers, explaining there is an expectation that slide decks and talks will be in line with the document and its recommendations. And while they’re at it, the same expectations should be in place for anyone showing in the exhibition hall at the conference, or writing about the event. Along with embargo regulations, press corps could also be sent the position statement.

We know that organisations have the capacity to be vigilant – perhaps had the ADA put effort into urging appropriate use of language at the conference instead of enforcing their archaic photo ban, they wouldn’t have been hit so hard on the socials.

It’s time for us all to expect more and to demand better. How are YOU going to do that?

Language at ADA (part 1)

June 20, 2017 in Conferences, Diabetes, Language | 2 comments

‘What was your favourite thing about ADA?’

I’ve been asked this question a few times now since returning from San Diego. And even though the meeting was so busy, with a lot of super interesting information being shared, it was actually an easy question for me to answer.

‘Language’, I answer without hesitating. ‘Specifically, that language was on the agenda at the meeting for the first time.’

On Sunday, there was a whole session dedicated to language in diabetes: ADA – AADE Joint Consensus Statement on the Use of Language in Diabetes. I attended eagerly because, of course, #LanguageMatters is my thing. It’s also the ‘thing’ of others far smarter than me, including these two women who let me sit with them and jump up and down like an excited puppy:

Professor Jane Speight led the development of the Diabetes Australia Language Position Statement, and Ann Morris, last year’s Australia Diabetes Educator of the Year, has been a champion of people with diabetes for a very long time.

There were some highlights in the language session for me, particularly from the first speaker, Dr Jane Dickinson. Jane recently wrote about a piece for Diabetes Spectrum about the effect of language on diabetes. She has type 1 diabetes herself and is a CDE, and her presentation was peppered with personal experiences of the role of language in diabetes care. (You can read more from Jane via her blog here.)

One particular comment Jane made really highlighted the rock and hard place between which PWD often find ourselves:

Susan Guzman was the second speaker and she pointed out that words not only affect the person with diabetes, but also create a bias for people working with us. The second that a PWD is described as ‘non-compliant’, ‘uncontrolled’ or that they ‘don’t care’, HCPs feel differently about the person. Appropriate language use isn’t important only for the person living with diabetes. It also matters if we want those working with us to treat us respectfully.

The final speaker was Melinda Maryniuk, CDE, from the Joslin Center and she spoke about the ADA-AADE Language Consensus Statement, and the five guiding principles that form the basis of the document as captured in this tweet from @MarkHarmel:

It’s not surprising that I was excited that this session was on the program. It was the first event I added to my calendar and I rearranged meetings to ensure that I didn’t miss it.

But I left wanting more. A lot more. And tomorrow, I’ll write about why.

#2017ADA dot point special

June 16, 2017 in Advocacy, Awareness, Conferences, Devices, Diabetes, DOC, Language, Real life, technology, Travel | 2 comments

Back from the ADA conference after whirlwind few days in San Diego which basically involved 19-hour days sandwiched between the first day (and 8-hour meeting) and the final day (a couple of short meetings before heading to the airport to fly home). Unsurprisingly, I slept most of the way home.

There were some absolute standouts of the meeting and here they are in super quick dot points. Some I’ll write about in more detail when I’ve finished hugging my family and infusing Melbourne coffee back into my exhausted body.

PR Fail

The ADA’s PR machine needs attention after the completely misjudged way they dealt with objections to their misplaced and archaic ‘photo ban’. It became the story of the first few days of the meeting and they really will need to reconsider what they do next year. (More on this another time, but here is a good summary from Medscape.)

Innovation away from the conference

While the conference is always full of late-breaking research and an exhibition hall of diabetes technology, the satellite events are often where the real innovation is at! On Friday afternoon, I went to the Diabetes Mine DData-Exchange event and was lucky to see and hear some of the latest and most innovative tech advances happening in diabetes, including lots in the DIY/#WeAreNotWaiting world.

Mostly, the room was full of those who knew what was going on in this space, so there really were only a few people who were surprised that there are many walking around with their own DIY kits, (which always makes me chuckle, especially if it’s a HCP having their mind blown by something PWD have known about and been doing for a while…)

(A bit of a watch this space from me as I am about to embark on my own build, which is slightly terrifying. The only thing giving me any confidence is that I have these two Wonder Women to call on if (when) I am completely lost!)

Wonder Women! Dana Lewis and Melissa Lee and their magical machines.

More at #Ddata17

Life for a Child

The IDF Life for a Child update, annually held at the start of the meeting, was, in equal measure, enlightening and despairing.

In this video, hear from Life for a Child Education Director, Angie Middlehurst, who recently visited the Diabetes Association of Sri Lanka and met some young people benefitting from the Program.

If you would like to consider helping Life for a Child, it costs only $1 per day to provide full diabetes care for a child. That’s right, one dollar a day. If you can, please do donate.

With Life for a Child’s Education Director, Angie and Health Systems Reform Specialist, Emma.

Who has a meeting at 5.30am?

Anyone who believes these meetings are junkets would reconsider the first time they need to be dressed, coherent, communicative and respectable for a 5.30 session. That’s 5.30am. And on the Saturday morning of the conference, I found myself in a room with a lot of other people (also foolishly awake at that time), to listen to the latest in CGM studies.

Thankfully, the session was super interesting with a lot of very valuable information being shared. (I really would have been pissed if I got up and it was a waste of time…)

Dr Steven Edelman from TCOYD was, as always, enlightening and added a most important ‘personal touch’ as he shared some of his own experiences of CGM. And some brilliantly relevant sound bites to remind the audience that while they may be focused on the machines and the algorithms and the clinical outcomes, this is about people living with diabetes.

Trying to tweet everything Dr Steven Edelman was saying…

Diabetes Hands Foundation wake

The news about the closure of the Diabetes Hands Foundation, and the move of its forums to Beyond Type 1 was met with sadness, but also a lot of optimism. Innovators in the online community, DHF was the first online diabetes network I ever felt a part of. It spoke to me, but mostly, it was inclusive. That’s what happens when you have people like Manny Hernandez, and later Melissa Lee, at the helm, and a team around you of people like Mila, Corrina, Emily and Mike.

DHF founder, Manny Hernandez.

We farewelled the DHF at a wake in a bar on 5^th Ave in San Diego on Saturday evening and the love and gratitude for DHF was overwhelming. Melissa asked us to recall DHF’s Word in Your Hand campaign as a tribute to Manny and DHF.

My word on my hand… We can always use more of this.

I’m honoured to have been a part of it.

Language

Oh yeah, there was a language session at #2017ADA and I have PLENTY to say about it. Maybe next week….

Sex, Insulin and Rock ‘n’ Roll

The team from Insulet threw an event on Sunday night way up in the sky, overlooking Petco Ballpark, home to the San Diego Padres, and we were presented with a panel of diabetes advocates prepared to talk about anything and everything. Brilliant in the way it was candid, unashamedly open and, possibly for some, confronting. Well done to the panel members who really were prepared to answer every question with personal insight and experience. This format really should be rolled-out as widely as possible to as many people as possible to help breakdown any embarrassment, or idea that there are taboo topics in diabetes.

Children with Diabetes

I was lucky enough to be invited to attend the annual CWD-ISPAD dinner on Monday night and speak with a number of healthcare professionals working to improve the lives of children living with diabetes.

Jeff Hitchcock, founder of CWD, is a personal friend now. I guess that’s what happens after you attend a Friends for Life conference and are welcomed into the family. FFL Orlando is taking palce in three weeks and my family’s time at FFL remains one of the most overwhelming and positive experiences of my life with diabetes.

I caught up with Jeff a few times throughout the conference to speak about the organisation’s work. He gave me a CWD medallion, which is now firmly wedged in my wallet as a reminder of not only my FFL experience, but also value of Children with Diabetes.

diaTribe

I could complain about my 19-hour days, but then I think about Kelly Close from diaTribe and then feel sheepish for even suggesting that I’m working hard! On the final night of the conference, diaTribe hosted three events and I attended the later two: Musings Under the Moon and Musings After Hours.

These events bring together leaders in diabetes technology and innovation and digital health and offer an opportunity to ask questions and challenge (and be challenged!) in a far less formal situation that the official ADA conference. For me, this is where I learn the most as the speakers are prompted by hosts Kelly and Adam Browne to really reflect on where we are going in diabetes innovation. My only misgiving about these events is that there are not enough people attending. That’s not to say that the spaces were not packed to the brim – they absolutely were. But I do wonder if perhaps it’s the people who really need to hear the realities of diabetes technology are not in the room…

MedAngel

I meet Amin from MedAngel as part of my time with the European Roche Blogger Group. Amin has created an easy-to-use sensor and app to help people with diabetes ensure insulin is kept at the right temperature. More about this another day, but in the meantime (after I’ve been using my sensor for a while), you can read about it here.

Learning all about MedAngel, with Amin.

Take aways

ADA is a very large conference. There is a lot going on, there are a lot of people around and I always leave with a lot to think about. Over the next few days…weeks…I’ll start to gain some clarity about a lot of what I saw, heard and learnt. It’s always the way after a big meeting like this one.

Someone asked me if I enjoyed the meeting and I suggested that was probably the wrong word to use. It was very worthwhile. I learnt plenty. I was able to catch up with advocates in the space who continue to push boundaries and lead the way in insisting that all work in the diabetes space is ‘person-centred’. People with diabetes are expected at this conference and seeing us as just being there – rather than having to fight for our place – inspires me to keep working better and harder.

Disclosures

I attended the ADA Scientific Sessions as part of my role at Diabetes Australia who covered my expenses, except for my first two nights’ accommodation which were covered by the International Diabetes Foundation so I could participate in meetings for the World Diabetes Congress where I am Deputy Lead for the Living with Diabetes Stream.

Hello from San Diego

June 9, 2017 in Conferences, Diabetes, Travel, Vlog | Leave a comment

I got on a plane in Melbourne on Wednesday at 9am, travelled for 20 hours , touching down in San Diego on the very same Wednesday at 10am. This sorcery explains the jet lagged mess below.

For the next few days, you can mostly find me at #2017ADA where I’ll be sharing the latest from the 77th American Diabetes Association Scientific Sessions.

Where to draw the line

June 2, 2017 in Diabetes, Healthcare team, Real life, Wellbeing | 5 comments

In my endo appointment the other day, after we’d finishing working through my pathology results, I wanted to speak about the mythical pre-bolus.

I say mythical because, seriously, the day I work out how to get the whole pre-bolus thing right is the day I see a unicorn walking up a rainbow while talking to a phoenix. I have hope this will happen one day.

My endo is one of those rare beings who understands the absolute intricacies of pumps. She knows a lot – from simple button pushing to complex things that make my brain hurt. When I started talking pre-bolusing, she brought out graphs and charts to help us work through my questions.

I mentioned that eating lower carb certainly helps avoiding post-meal spikes, but I was having trouble getting my morning coffee dose right. I know exactly the number of carbs in the milky-latte-with-one I order, but the timing of the bolus is critical to avoid a post-caffeine spike and ensuing plunge.

‘Plus,’ I added. ‘It depends what is going on with my glucose level as I start to drink. If I’m already dropping, which may be happening at that time of morning, and I bolus too early, I’ll end up hypoing, so I usually wait until about five minutes before I order my coffee. But if I’m above target, I need to bolus at least 15, but more like 20 minutes before ordering. If I’m steady and in range, somewhere closer to 10 is more like it. Maybe 12…’

Just drink the damn coffee!

I heard myself going into such detail and suddenly, I realised how bloody boring I sounded. My poor endo had just endured a 10-minute monologue from me on bolus dose timing to cope with my over-priced morning coffee from the hipster coffee shop next to work. I couldn’t help wondering if this really is the best use of the time and expertise of a most excellent endocrinologist? Also, I was embarrassed at presenting this first world problem as such a pressing issue.

She showed me some graphs, and drew a few others for me to think about. We spoke about timing and strategies and things to consider before pressing the bolus button.

But then she stopped and said, ‘You know, you can think about all these things, but you can also not worry too much. Obviously it’s up to what you want to do here, but thinking about things in ‘minutes’ before your dose…you need to decide if that really necessary.’

And then it hit me. The over-analysing and over-stressing and excessive scrutiny. What for? I’d just seen an in-range A1c that suggested I’m managing just fine with what I’m doing. Was the angst of blousing twelve minutes versus 16 minutes prior to my morning caffeine jolt really worth the calculations and the strain?

We are often critical that our HCPs put unreasonable expectations on us with what they demand we do to manage our diabetes. How refreshing to have a diabetes HCP who actually suggests that we breathe and take a step back for a moment to decide if a particular undertaking is absolutely necessary, or if it is just adding unnecessary pressure to our already highly-pressured diabetes selves.

The follow up appointment

June 1, 2017 in Complications, Diabetes, HbA1c, Health, Healthcare team, Real life | 2 comments

As someone who is rather passionate about the words we use when we are talking about diabetes, I was framing how I would respond in my endo appointment when I finally received my pathology results yesterday. ‘Path results are not a moral compass, Renza. They give you a snapshot of data and that is information to help you inform treatment decisions moving forward. Nothing more. Nothing less. Your value as a person is not based on the numbers on the paper.’ I repeated the words rhythmically over and over and over again.

And maybe, I almost started to believe them.

I walked into the office and sat down anxiously. With a smile, she handed me sheets of paper. ‘You’ll be happy,’ she said to me. She told me my A1c as she knew that was what I would want to know first.

I flipped through the papers, the numbers starting to blur. I heard the A1c number but the rest stopped making any sense. ‘I don’t know what I’m looking at all of a sudden!’ I said to her.

‘Ah,’ she said. ‘Let’s start with your kidney check because I know that always worries you.’

We went through all the other results too. I was smiling and almost bursting into tears. ‘I’m so pleased,’ I said. ‘I’m so pleased with myself.’ And it’s true. I was feeling good about myself. And then I stopped taking.

Of course I was pleased; the results were all good. The numbers were in my target range. All of the worries I’d had for the last week melted away. But along with the celebration, I was starting to feel uncomfortable.

If the numbers were not where I wanted, my response would have been disappointment and, perhaps a little shame. I would not have been pleased with myself, instead chastising my lack of effort and feeling I was not enough. Yet, the effort would have been the same regardless of the numbers on the page.

Try as I might, I cannot divorce the idea that an in-target number is somehow connected to my value as a ‘good person’, which translates to an out-of-target number means I’m not. I fight this idea all the time. I write about it, I talk about it, I genuinely thought I believed it. Does the entrenched messaging we are told over and over again by some HCPs mean we actually should assess our own value as people based on numbers (a pathology check, BGL check, CGM trace, weight, blood pressure….)? Can we simply not move beyond the judgement?

I pushed away the thoughts and tried to just breathe with the relief I was feeling.

I walked out, paid the bill and walked to my car. I decided that I wanted to share the good news with Aaron, and I sent him a text with my A1c result. He responded perfectly with a gorgeous message…and then brought me Tim Tams for dessert.

And while we were munching on those Tim Tams, I said to Aaron, ‘You know, I’m really pleased with everything here. I’m pleased with my A1c, but the thing that relieved me more than anything are these five words…’ I leaned over and pointed to the paper at the five words I was referring to:

And I breathed out. Possibly for the first time in a very, very long while.