I woke up today to feeds full of tech – diabetes tech. Plus I seem to be reading heaps and talking about not-so-new, but still awesome tech-y stuff.

Diabetes technology has been on my mind a lot lately (as well as on my body). Mostly, I have been thinking of the evolution of how dtech moves from being a niche market embraced by only a few, to becoming mainstream.

Back in 2001, those of us using pumps were seen as leaders in the dtech area. Many diabetes HCPs had never even seen a pump and certainly were not comfortable encouraging people to use them. The only reason I started using this technology was because I met someone using one at a diabetes event and asked her. I then spoke with my endocrinologist who was incredibly dismissive, labelling the technology as dangerous. I interviewed for a new HCP team to find people who were more willing to embrace technology.

The same thing happened when CGM was launched here.

And the same with new and different other devices. iBGStar, Libre, diabetes apps – most often, the interest is led my people with diabetes who force the establishment to catch up and get on board.

And I think it is still happening. Here are some things that are being spoken about by patient advocates A LOT. How many of your diabetes HCPs would know about the current state of play in the space? Next time you see them, why don’t you ask?

TANDEM

Makers of very cool (and, frustratingly, unavailable here in Australia) t:slim insulin pump, Tandem Diabetes Care, has joined forces with digital health company, TypeZero Technologies. Yesterday’s announcement explained that the two have entered into an agreement whereby the next generation t:slim pump will integrate TypeZeros’ artificial pancreas technology.

More here.

BIGFOOT

#IBelieveInBigfoot even more after news today from the start-up that they have commenced clinical trials of their smartloop automated insulin delivery system. BigFoot Biomedical is hoping to commercialise their product by 2018. That’s way less than 5 years, folks!

More here from the team at Diabetes Mine and here from the team at ASweetLife.

FDA votes on CGM

Looks like our Dex 5-wearing friends in the US will soon have the same classification on their devices as us here in Australia (and in Europe) with the FDA voting to revise labels to support treatment decisions based on CGM data without confirmatory BGL checks.

The live tweeting from the FDA Panel hearing was interesting with some really valuable and insightful comments from patient advocates. (And can I just say how refreshing it is to see that advocates were given such a huge opportunity to speak here?!)

Some interesting discussions on the interwebs as the vote was announced (and in the lead up too). Not everyone is as excited by this development, or on the same side of the advocacy fence, with some claiming that they don’t have the same faith in the tech and fear that access to BGL strips will be removed.

For what it’s worth, my experience with this technology – and using it as classified – has been nothing but positive. The accuracy of the system is, for me, undeniable and I trust it implicitly to treat both high and low BGLs without doing a confirmatory blood check.

And I have also written before that I have used my CGM ‘off label’ for some time – even before the G5 – and am confident in saying I know I am not the only one. This seems like an example of the regulators finally catching up to the reality. Welcome to the party, guys!

More about the FDA vote here.

GONG FOR ED DAMIANO

Congratulations to Ed Damiano who was awarded Boson University’s Innovator of the Year for 2016.

Ed was recognised for his work in developing the iLet Bionic Pancreas.

More here.

WHAT THE HELL IS #OPENAPS?

Someone asked me this the other day – actually using those exact words. I bumbled my way through an explanation and after about 60 seconds remembered THIS piece by Dana Lewis.

Have you had a discussion about this with your (or any) HCPs? And if so, what have they said? Most HCPs here I have spoken to either do not know about it at all, or are very dismissive of it.

It seems that there are a lot of people in the DOC who have kept across the ‘movement’, but not a whole lot of break-through in more traditional corners.  As is often the case, I suspect that the way, it will be PWD who drive that.

IN MELBOURNE?

Check out this tech event: Translating type 1 diabetes technology into the everyday. It’s free and there is lots on the agenda.

 

 

Last night’s OzDoc tweetchat was a beautiful tribute to someone who has been part of the OzDOC community pretty much since it started four years ago. Tony, better known as @EatYourMeter, passed away last week, and Kim from OzDOC knew that we would all like to remember him together in our weekly chat.

I didn’t know Tony all that well. Our interactions took place mostly on Tuesday evenings between 8.30 and 9.30. He always provided a compassionate and thoughtful voice to the discussion. Tony lived with type 2 diabetes, and I learnt so much from him because he frequently reminded us that our type 1 perspective (which is, for the most part, the voice of the online community) did not necessarily mirror his experience.

A couple of times he gently pulled me up on some dismissive comment I made about ‘just eating something and giving insulin to deal with it’, with a reminder that not everyone has the ability to do that – not everyone uses insulin! He was never aggressive about it – there was no SoMe outrage in his approach – just a friendly nod to remembering that we all are navigating this diabetes road in different ways.

Tony was very good at noticing what people were interested in and sharing information that he thought they might like. Early on, he picked up on my word nerd tendencies, particularly my love of collective nouns and every now and then, he would tweet me an obscure collective noun reference that would inevitably delight.

Last night, as a group, we remembered Tony. Kim led us through a gorgeous chat where we shared memories of our on- and offline encounters with Tony.

OzDOC started four years ago after three of us – Kim, me and Simon (@STroyCrow) – decided that it would be a good idea to have an Australian-focused chat because we felt that there were particular issues that were of interest and importance to Aussies with diabetes. That was the idea, anyway.

And we were right. But what has happened is much more than that. The group grew to more than just a group of strangers on Twitter coming together for an hour a week. Friendships were formed and many of these friendships moved outside the world of Twitter.

Simon and I have stepped away from coordination roles, but Kim has taken the group from strength-to-strength and her work has meant that a tight-knit, supportive and respectful network has formed. The term used to describe this is #dlove and #dlove is thrown around generously.

Last night, we said good bye to one of our own. I, for one, am so glad to have known Tony, and am terribly sad that he will no longer be a voice in the OzDOC community. But I know that while we all feel this loss, we will not forget Tony or his compassion. He will always be part of the OzDOC world.

#RIPEatYourMeter

Some people may have seen news reports yesterday about changes to access of blood glucose strips for people with diabetes in Australia. Some reports were a little light on detail (and by ‘light on detail’ I mean ‘incorrect’) and there has been a lot of discussion on SoMe with people trying to get the facts and work out what it means for them.

This information on the Department of Health’s website gives all the details to date.

Following the news piece, quite a few people have been in touch asking me if I can provide some clarification. I have no details other than what has already been announced publicly. When the announcement was made last year, I wrote this piece about it, so for some background of the issue – and my take on it – have a read.

But what does it mean TODAY for people with diabetes in Australia?

  • These changes DO NOT affect people with type 1 diabetes or insulin-treated type 2 diabetes.
  • No one should be denied access to BGL strips today, tomorrow, next week or next month. While the change in policy took effect from 1 July 2016, an initial six-month supply has been automatically granted to all NDSS registrants with non-insulin treated type 2 diabetes. This means the earliest anyone may be affected by the changes is 1 January 2017.
  • Further information will be coming, so keep an eye on the NDSS and Department of Health websites.
  • Speak with your HCP about the changes if you are concerned about how this will affect you and your diabetes management.

I know that many of us are feeling a little confused about diabetes supplies at the moment with the recent changes in how we access our consumables, and this seems to just be another change we need to deal with.

And as with all change, there is often a lot of speculation and misinformation being shared around. The sensationalist nature of yesterday’s reports did nothing to allay any of these concerns and only fuelled the fire of uncertainty. And is yet another example of poor reporting of diabetes in the media.

I’m almost ready to take a deep sigh of relief, because National Diabetes Week is almost over. It’s been a busy week – it always is. I’ve been working for diabetes organisations for a very long time, and have seen quite a few national campaigns, including some of which I was very, very critical. (Just ask the Comms Manager I worked with for over 10 years who had to deal with me complaining a lot!)

But today, I am writing only of this year’s campaign, which has highlighted the need for a National Diabetes Amputation Prevention Strategy. The campaign has not pissed me off which is a pleasant surprise for everyone who has to work with me. I don’t think it is a scare campaign. I don’t think it is graphic and gory. And I don’t think it is laying the blame for developing diabetes-related complications on people with diabetes.

On Sunday, within hours of the launch, the criticism started. I posted this on my FB page, and my frustration is pretty apparent.

Throughout the week, in between doing interviews trying to raise awareness of diabetes and why it is really crap that each year 3,740 have diabetes-related amputations that could have been prevented, I have read many comments about the campaign. A lot of them – in fact the vast majority – are really positive. Many people understand the complexity of communicating a really difficult message to a very diverse audience. But not all of them.

I have never subscribed to the idea that everyone needs to have the same opinion. And I have never ever shied away from people criticising me or the work I do. I like robust discussions, especially if they are respectful and that everyone is open to considering – not necessarily agree though – with all sides to the debate. (Unless we’re talking vaccination. Then there is only one side.)

But I what I absolutely despise is that any time diabetes is in the media and someone doesn’t like the angle, because what is being discussed is not relevant to them, or they don’t like the message, they respond with immediate outrage and negativity and refuse to consider other positions. This is not just a diabetes thing – social media outrage is the default position for many – hell, I’m guilty of it too. But often with the outrage comes assumptions and the perpetuation of misconceptions about diabetes.

In my capacity as an employee of a diabetes organisation, I have read the comments and not replied. That includes to the direct messages I have received on Twitter and Facebook and email that have been personally attacking and have called me some pretty choice names. (There is no denying the power of deleting and blocking!)

But today, I thought that here, I would put down my responses to some of the comments I’ve seen online. (Please remember that this is my blog and all opinions are mine. Nothing I have written here necessarily reflects the thoughts of the organisation I work for.)

  1. The campaign is not relevant to people with type 1 diabetes.

Of course it is! You have diabetes – any type – and you are at risk of complications. That’s the reality. It’s unpleasant; I hate thinking about it; it terrifies me.

Here is what denying this reality does: it adds shame and stigma to those who do live with complications. Had a limb amputated? Well, obviously it’s because you didn’t look after yourself and are not a diabetes superhero like me.

  1. Type 1 and type 2 diabetes are not the same thing.

Yeah, I know. I get it – they are two different conditions. Sometimes though it’s not relevant to differentiate. 4,400 people have diabetes-related amputations each year. Some are type 1 and some are type 2; some are men and some are women; some are older and some are younger. They are all people and they all have diabetes.

  1. People already diagnosed with diabetes know what happens if their condition is not well managed.

Absolutely not true and a dangerous idea to perpetuate. And this sort of comment is a brilliant example of not being able to look outside your privilege bubble.

If you are in a position to know a lot about your health condition, have access to specialist care, have wonderful support around you, (or know where and how to access support), can afford the latest treatment and technology and are managing really well – that is fantastic. I am one of those people and I know how lucky I am. But many people do not. If you are sitting on the end of a computer, complaining on Facebook and/or blogging about your experiences, you are privileged.

If you are one of those people and think everyone else is just like you, you are wrong and I would really urge you to maybe look beyond the Facebook page where you do your bitching and moaning.

Also – what is it saying to the people who have done everything ‘right’ and still have developed complications?

  1. People with type 1 are well aware – it’s people with type 2 that have no idea what they are for if they keep mismanaging their health.

Really? Just wow! Let’s break this into two sections:

  • It’s a mighty big assumption to make that all people with type 1 are aware, capable and well-informed of their condition. It’s also incorrect. And it says that we don’t need to be focusing on people with type 1 because we are all clever clogs and know everything!
  • The idea that it is only people with type 2 diabetes who have no idea is wrong and also really stigmatising. And it shows a complete and utter lack of understanding about type 2 diabetes and those living with it. Maybe that campaign about the different sorts of diabetes needs to start from within the diabetes community first. How can we expect people completely unaffected by diabetes to know the facts of those of us in it are so ill-informed at times?
  1. What would you know? You don’t live with diabetes.

Hi. I’m Renza (or Brenda, Peta, Wenzer). Here is my blog about living with diabetes.

One of the things I have come to learn is that there is no way that a single diabetes campaign will appeal to everyone or be relevant to everyone living with the condition. And that there is no making all people happy all of the time. In the spirit of this piece of advice, I am calling the week over and putting it in the vault. Have a great weekend everyone!

 

The new Prime Minister of Britain has type 1 diabetes. I am sure that you have heard this about her, possibly mixed up in the commentary about her hair and shoes. (Which is, of course, THE most important thing about a woman who has become one of the most powerful leaders in the world and absolutely what we should all be talking about. Ugh!)

Pretty much everyone I have ever met has informed me that the new PM has type 1 diabetes. I have had calls, emails, Facebook posts and texts from people excitedly telling me that Theresa May is just as pancreatically-challenged as me! Many have asked if I am excited that we have a new pin-up gal for ‘our cause’.

I’m not commenting on May’s politics – that is actually totally irrelevant to how I feel about having a world leader with type 1 diabetes.

Here is what I would love to see about Theresa May’s own diabetes. Very little. Because I don’t want her type 1 diabetes to become a focus. I don’t want type 1 diabetes to be ‘blamed’ for questionable decisions, political gaffs, or the fact that she fell asleep in parliament last week.

Because people without type 1 diabetes make bad decisions all the time. And people without type 1 diabetes make political gaffs. (Barnaby? David? I’m looking at you two…) And people without type 1 diabetes fall asleep in parliament because often there is a man in a suit speaking in a monotone about something possibly rather uninspiring. For a very, very, very long time.

In the same way that every move AFL player Paddy McCartin makes is scrutinised from the position of his defective beta cells, I fear that may be the case for Theresa May.

A world leader with type 1 diabetes is brilliant because it can show people that diabetes need not be a barrier to being at the top of your game. We all love a story like that!

But being the excuse for any negativity – or becoming the focus of her time as PM? That can do ‘our cause’ more harm than good.

Related – but not really

Discussions about Theresa May have included me saying: ‘Well if Jed Bartlet can be President of the United States of America with MS, Theresa May can be PM with type 1.’ I had to be reminded that Jed Bartlet is not real – and no matter how hard I hope and wish for it to be true, it never will be. Damn. 

The contradictions in diabetes are complex and confuse my little mind sometimes. Today is one of those days.

Getting the message that diabetes is serious – and needs to be taken seriously – is sometimes messed up in our determination to show that diabetes won’t stop us from being superheroes. In our proverbial capes*, we do amazing things; we are brilliant; we advocate; we inform. All while pretending to be a pancreas.

We use language that empowers us and makes others see us as forces with which to be reckoned. I say I live with diabetes (often saying I live well with diabetes, never struggle with it. I refuse to even suggest for a minute that I am suffering with or from diabetes and will correct anyone who suggests otherwise.

But is that undermining the seriousness of it? And is it ignoring the days where it does seem like a battle – and an uphill one at that.

I refer to diabetes as a condition, never a disease. Is that the right terminology? And why do I do that?

According to this piece at Health Writer Hub a disease is an …’ abnormality in systemic function…that causes both physical and emotional signs and symptoms’. A condition is …’an abnormal state of health that interferes with the usual activities or feeling of wellbeing’. Both are actually correct when talking about diabetes, and yet I (and many others) object to using the term disease.

Perhaps we don’t want to be thought of as ‘diseased’ or as if there is something wrong with us and ‘disease’ does suggest that.

We want people to think we are superheroes who manage to not only thrive and excel with the condition (disease?) we have been dealt, but also demand that they don’t think of us as any different to everyone else and are given the same opportunities and choices.

Are we doing ourselves a disservice by appearing so ‘in control’ and, dare I say it, ‘normal’, when there is truly nothing normal about having to pretend to be an internal organ, day in day out?

I don’t for a minute want to stop being the empowered, confident, secure and capable person I am. But sometimes I do feel that in all my cheerleading efforts, I sometimes forget – or rather refuse to admit – that it can be tough.

And mostly, I wonder, and fear, that if we all are making diabetes look so easy to manage and impact us in such insignificant ways, do others not see and understand the urgency that we feel every single day in our desire to make things better? Who needs a cure if we look so bloody happy and competent with our little condition?

*I totally do wear a cape! 

Today I attended the Victorian Kellion Victory Medal Award Ceremony. There before me, sixty-six people were awarded medals for having lived with diabetes for 50, 60, 70 and 75 years.

I write about this event every year, and each year, I write about how much hope and inspiration I feel while sitting in the room.

Because it’s true. I walk away from the Kellion awards full to the brim and amazed at what these people have achieved. I’m never sure if it is despite or because of their lives with diabetes that I feel this way. But, undeniably, it is a special day.

Frequently the stories are the same – a shock diagnosis, sometimes a misdiagnosis. Many are unable to pursue their chosen career, especially in days where teaching or nursing were not possible vocations for people with type 1 diabetes. Many spent a lot of time in hospital as they adapted to their post-diabetes-diagnosis life. And many reminisce about injecting into an orange, which apparently was the done thing for a newly diagnosed person 75 years just as it was 18 years ago when I was diagnosed – and still today!

And they share tales of brutal management instruments and tools that in equal measure terrify me and make me glad of the time I was diagnosed.

The hope exists for me because when I look around the room, and I listen to the stories and I speak directly to the recipients and their families as they proudly hold on to their well- earned medals I don’t see diabetes. I see people.

They don’t all claim that diabetes has been fun or that it has been a breeze. In fact, some of them are really open about just how tough it has made their life. But even those who say they have really struggled, still do not believe diabetes has been the single most defining aspect of their life.

I’ve always said that I wish all newly diagnosed people could meet a Kellion medal so they can see that everything will be okay. But I think that was a little naïve of me and actually undermines just what it has taken for these people to be standing there in front of us, accepting their medal. And it also suggests that diabetes hasn’t actually had some sort of impact on their lives.

These are ordinary lives made extraordinary by diabetes. And while their achievements are not there for my benefit, I am so glad that I get to hear their stories.

Source - @DiabetesVic

Source – @DiabetesVic

On our last full day in New York, we walked down some stairs to the subway. My phone started vibrating and beeping and I knew that I was heading low.

I hadn’t really managed to get the whole hot-weather-walking-a-lot thing sorted out on this trip. I dealt with insane Conference Hypo Syndrome from literally the second I stepped foot into the conference centre in New Orleans, and just managed by setting a lowered temp basal rate and drinking a lot of juice.

And then, we were on holidays and while I know diabetes is for life, not just for X-mas, I couldn’t be bothered ‘doing diabetes’ and being smart about making some changes and addressing the lows properly.

For the most part, I was right. I responded to the rapid fall warnings on my Dex and avoided any super-nasty lows.

But this day in the New York subway, I was already firmly in ‘deal with me now’ hypo territory. I had a bottle of juice in my bag, but walked into a little kiosk on the platform to see what I could use instead. And there before me I saw these:
And I squealed.

‘Oh my god. Babe. BABE. LOOK!’ I said to Aaron as I grabbed a couple of packs and started to open them before paying. I think he fished out a couple of dollars from his pocket to pay the guy who was watching me carefully. ‘I love these,’ I announced loudly. ‘Green apple Mentos! I LOVE these!’

Aaron corralled me back to the platform and we sat down waiting for our train and I started to munch my way through the pack.

Want one?’ I asked him, pushing the tube into his face. ‘No thanks. I don’t like green apple flavour.

This was a fact I knew well because every time I mention how much I love green apple flavour, he reminds me he doesn’t.

‘What? WHAT? Of course you do!’ I said. ‘It is the best flavour ever. EV-ER! Remember? It is everywhere in France. Remember, babe? Remember? And there was that time that I found green apple Mentos in Melbourne at a servo and got so excited that I bought, like, 40 tubes. Remember? Have one… Have one babe.’

‘No, I’m okay,’ Aaron said. He went back to reading something on his phone.

‘Babe. Do you remember that time at the servo? I told you, right? I was really low and I went in and saw them and got excited and was ranting and raving to the poor attendant about how excited I was and how I’d never seen them in Australia. Do you remember? The guy thought I was really weird because I couldn’t stop talking about how excited I was and how much I love green apple flavoured lollies. Do you remember?’

Aaron shut off his phone and turned to me. ‘I guess I’ll read this later,’ he said smiling.

I ignored him and continued. ‘So I told him how green apple flavour was EVERYWHERE in France, but not here in Australia and how you could get green apple gum and soft drinks and heaps of other stuff and how I love it. LOVE. IT! Remember how it is everywhere in France? Yeah? And then I asked him how many packs of Mentos they had and I dumped them all on the counter and bought them. I spent, like, sixty dollars on lollies. Green apple lollies. I was so excited and speaking really quickly. Like, super quickly. Almost ranting. Like the fast talked in Seinfeld. Remember Jackie the lawyer in Seinfeld? I was talking really, really fast. Like that.’

‘Kind of like now?’ Aaron asked.

‘Am I? Am I? I am… Aren’t I?’ I said. ‘Yeah – I guess. Maybe it’s the green apple. Do you think that’s what it is? Do you, babe? Could it be the green apple? I LOVE green apple flavour! I should have bought more. Will I go back?’

‘I think it could be because you are low. And I think maybe you should eat a few more of those Mentos instead of just speaking about them.’ Aaron said gently.

‘Do you want one? They are great! I love this flavour!’ I asked.

The train pulled into the station and we found a seat. I checked my iPhone and saw that I was no longer dropping. I took a deep breath and looked around the carriage.

‘I really like green apple flavouring,’ I murmured to Aaron. He reached over and took my hand.

‘I know. And you’re really funny sometimes when you are low.’

I rested my head on his shoulder and concentrated on my heart rate, which was slowing down. By the time we got off the train I was feeling fine. And happy. Because tucked away in my bag was a yet to be opened packet of green apple Mentos.

My favourite app on my iPhone is Uber. I love it. All the issues of having to stand around on street corners, waiting for a taxi and flagging down empty cabs as they race by you are easily and conveniently eradicated with a simple few clicks of the app on my phone. No need to worry about having cash on you – or dealing with the frequently not-working credit card machine in the car. Get in, get to where you need to go, get out. And sometimes there are snacks!

I have used Uber around the world and I love that it doesn’t matter if I am in Stockholm, New Orleans, Melbourne or New York, it works the same.

I had the most delightful Uber drivers in New Orleans a few weeks ago, including one who picked me up from a burger place in the middle of nowhere (thanks to Fredrik for always finding the most obscure, out of the way local haunts!) and chatted happily with me for our 10-minute ride back to my hotel. She gave me some terrific tips for the city and asked me about Australia.

Another night, also in New Orleans, we were picked up in a red jeep by a funny and friendly guy called Kevin who, if we had said ‘You know, we’re not done yet; how about we go to another blues bar,’ would mostly likely have joined us. And shouted us beers.

When we got to New York, we collected our bags at JFK and walked out to grab a cab. We settled into the back seat for the hour long trip to our hotel and mindlessly watched the little screen on the back of the driver’s seat. And there, we saw that New York’s iconic yellow cabs had a new app, Arro, which allows passengers to hail a cab and pay for their ride using their smart phone.

This was clearly in response to Uber and the convenience and ease it has afforded users.

Uber is an example of disruption in an industry that previously had absolutely no competitors and was happily providing a rut of a service that users simply had to use. It came about because the system was broken.

Healthcare hasn’t had that disruption. And it needs it, because this system is broken.

One of the most interesting sessions I attended at the ADA was an out of hours event hosted by the innovative team at diaTribe. I know that we can always count on to get us thinking.

The Musings Under the Moon session was billed as a discussion on digital health. But it was much more than just a state of play update.

I sat down with some DOC friends at had a good look who was presenting. There in front of us, all together sharing one stage were absolute leaders in digital health and technology, including the CEO of Bigfoot Biomedical, the President of Medtronic Diabetes, the CEO of Dexcom and an Executive VP at Novo Nordisk. And outside the specifically diabetes space we also had the Chief Health Officer at IBM and the VP and Chief Medical Officer at Qualcomm Life. The panel was expertly moderated by diaTribe’s Adam Brown.

To assemble such a panel is one thing. To have them candidly talking about the what is going on in the digital health space – and being challenged on why it is not moving faster – is another.

Perhaps the most candid and, for my money, the most interesting commentary came from Jeffrey Brewer from Bigfoot Biomedical. A couple of things he said have obviously resonated with many others in our community because they have been shared over and over on social media. Like this:

He is right and it is no wonder his words were met with such overwhelming support from people with diabetes. Brewer is not backwards in coming forwards and this comment also shared not only his, but many in the community’s, frustrations.

 

We have become conditioned to simply accept the status quo when it comes to developments in diabetes technology. We accept that the drivers of not only the developments, but the speed in which they arrive in our hands and attached to our bodies, are the companies whose skin in the game is, for the most part, is return on investment. I get that and, as is the case with any business, it to be expected. I also understand approval bodies and their debilitatingly slow processes.

Except it’s not really okay when the result is that we are not moving as fast as we should be.  Or that we begin to believe that what we do have at our disposal is as good as it gets.

Today, we would never believe the idea of sharpening needles or checking urine is an adequate way to to manage our diabetes. Not when there are other tools available.

And yet, we think that it is perfectly acceptable to use BGL checking four times a day (or six or ten or twenty…) as a way to manage our diabetes. This is old technology that gives a snapshot with no more information – no arrows, no suggestions of where we are going or where we have been. How is that still okay when we have CGM and flash glucose monitoring available that we know provides more information, more data, better ability to make smart management decisions?

We do nothing because we can’t or we simply accept that we use what we have. This doesn’t for a moment take into consideration the trailblazing Open APS users (currently 88 people around the world according to this tweet from Dana Lewis), and movements such as #WeAreNotWaiting.

Healthcare needs disruption. The current situation is not okay; the system is broken and it needs fixing. Because right now, we are being shortchanged. And it’s not good enough.

I have absolutely no connection to Bigfoot Biomedical other than I am very fortunate to be friends with Melissa Lee who works for them. But I did win one of their t-shirts in a competition at ADA and I proudly wore it on the streets of New York!

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Throughout my recent trip, I kept a diary of sorts of some of the diabetes things that happened. Here is a selection of what I noted down.

ON THE KITCHEN BENCH…

…I left all my hypo treatment. Brilliant, Renza. Brilliant. I was reunited with said hypo treatment when Aaron got to NOLA. He took advantage of the situation to snap a pic:

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And of course, he captioned it ‘Snakes on a plane.’ Oh, yes, he did.

ENDOS ON TOUR

The Qantas Lounge at Melbourne Airport was swarming with local endos. As was the Admiral’s Lounge once I got to LAX. If there was ever a time to have a diabetes emergency, this was it!

HIGH WHILE HIGH

Try as I might, I am hopeless at not rage blousing when high. There I was, 30,000 feet above the ground, relatively comfortable after an airline upgrade (and spare seat next to me) and high as a freaking kite.

I had a temp basal set – a very aggressive temp basal rate.  I had done a correction bolus every thirty minutes. And yet, there are double arrows up on my Dex which was pissing me off beyond belief. I eventually did another correction with a syringe and slowly, but surely watched my glucose levels return to a far happier number. Just in time to get off the flight at LAX…

…AND OF COURSE, THEN I WAS LOW…

…which necessitated this:

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I most eloquently ordered it by saying: ‘Can I please have a small iced latte with Half and Half. Because I’m hot and it’s low. Wait…What?…I mean…I’m low and it’s hot…Oh jeez… Can I just have my coffee with Half and Half. Because: HALF AND HALF. I LOVE YOUR COUNTRY.’ (All class. All. Freaking. Class.)

TSA FUN

‘I can’t go through the full body scanner. I’m wearing a couple of medical devices,’ I said politely to the TSA officer as I queued at LAX security. I was tired, felt grotty and getting over my latte-cured low.

‘Well, the wait will be a while,’ he said a little abruptly. ‘It’s very busy.’

‘That’s fine,’ I said. I understand that the palaver of what comes when avoiding the scanner takes extra time and resources. I didn’t appreciate his tone though. Or the follow up comment.

‘You could be waiting a while. You WILL be waiting a while. You could go through the scanner. Or you’ll have to wait,’ he said.

‘That’s not a problem. I can’t go through the scanner – there is a risk my devices will stop working. And then so will I,’ I smiled at him to show that I really wasn’t going to be upset at the wait.

‘Stand over there out of the way. You know you’ll have to wait, right?’ I’m glad he mentioned it again, in case I had missed it the previous times.

I didn’t ask for this condition and I certainly don’t ask for the extra degrees of difficulty it often attracts. Equally, I don’t demand special attention and am prepared to wait and deal with whatever I need to do to.  So I really hate to be made to feel that I am deliberately putting someone out.

As it turned out, I didn’t have to wait too long. A mere three minutes after the call for a ‘female opt out officer’, a lovely TSA official beckoned me to the pat down area and kindly explained the process. I nodded and pointed out where I was wearing my pump and Dex and stood there while she did her thing. And then thanked her and was on my way.

MY ARM KEPT GETTING PAPPED

When you decide to pimp your Dexcom sensor and transmitter in Melbourne while the weather is cold, necessitating long sleeves, you don’t necessarily think about what that will mean once you get to far sunnier climes and are bare armed all the time.

My arm became a mini-celebrity at the conference with complete strangers coming up and commenting and asking if they could take a photo.

(No idea what I'm pointing at...)

(No idea what I’m pointing at…)

Hopefully the lovely folks at RockaDex will see some benefit – I was promoting you guys like you wouldn’t believe! (Yes, they post ANYWHERE!)

THE WAITRESS AT THE DIABETES EVENT

At the end of the fabulous Musings Under the Moonlight event, hosted by diaTribe, a few of us gathered our things and decided that a late night Café du Monde visit was necessary. And as we walked out the door, I was stopped by one of the waitresses. ‘Excuse me, Ma’am,’ she said (because everyone is either Ma’am, Sir or Miss). ‘Can I ask you about the tape around your Dexcom. My daughter has diabetes and is a swimmer. Her Dexcom tape is always coming loose. Maybe this will help it stay on longer.’

I grabbed a pen and wrote down the details of RockaDex and told her how terrific it is. (I am absolutely not on their books, a part owner or even get free supplies. It’s just great stuff!)

‘Can you imagine?’ said Scott. ‘Her mind must have been blown being in that room tonight!

Always – ALWAYS! – love a bit of diabetes in the wild!

NPH ON CROSBY STREET

Walking back to our hotel on Crosby Street in SoHo, I looked up and saw this pasted to a wall:

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And my day was made. (Check out Appleton Artworks for more of their diabetes awareness raising street art.)

‘IT’S FOR THE KID. THE OTHER THINGS ARE FOR YOU…’

One of my favourite diabetes people, gorgeous Alecia, lives in NY and one of my favourite things to do in NY is see her. We met for lunch in Murray Hill at Penelope’s and she handed me a Kate Spade bag.

I peered inside and excitedly pulled out a pink box with familiar writing on it. ‘That’s for the kid,’ I was told in no uncertain terms. She was referring to the American Girl Diabetes Kit and I actually squealed when I opened the box and gently pulled out all the teeny tiny pieces.

Sorry hon – I kept the American Girl diabetes set. The kidlet is still trying to convince me to give her the pencil case and I am desperately resisting. But the candle – that’s on my windowsill at work making me think of you.


AND FINALLY…

If you need to have a hypo in NY, this is probably the best place to do it:

The Nutella Bar at Eataly.

The Nutella Bar at Eataly.

 

Read about Renza

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