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

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

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

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

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

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

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

Hello RileyLink!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

WANT MORE?

For more information about Cellnovo click here.

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

 

DISCLOSURES

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

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

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

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

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

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

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

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

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

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

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

(Settle down, Mum & Dad…)

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

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

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

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

Today on my Instagram feed, this came up:

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

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


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

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

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

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

GIVEAWAY!

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

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

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

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

Puppy on my lap and CGM on my arm.

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

It can’t just be the device.

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

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

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

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

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

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

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

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

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

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

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

I’m a little cranky this week. At least, that’s how it may seem with some of the ways I’ve been responding to things I’ve seen online.

Yesterday, mice were cured again which was awesome and wonderful if I were a mouse, as suggested in the photo to the right.

Alas, I am not, so I felt the way I usually do when I hear of diabetes disappearing in rodents – ambivalent, as I crabbily pointed out to anyone who would listen. (It was quite timely when this article came across my radar which did a good job explaining how mice and humans are different and therefore what works for a mouse may not work for a Renza…or any other human.)

And then there was Monday’s post about the Twitter discussion about how much power and influence healthcare users have in the healthcare system (spoiler alert: the answer is very, very little…).

But today, I’m writing about an ongoing Twitter discussion that has me shaking my head for different reasons.

I wasn’t around the diabetes world when home blood glucose monitors came onto the market. I was handed a meter the day I was diagnosed in 1998, and I was able to take myself off to an NDSS outlet and pick up strips. Blood glucose monitoring was expected then, and I was easily able to access what I needed to meet the recommended glucose monitoring treatment I was prescribed. I remember being told just how essential it was that I prick my finger and check my glucose levels before meals and before bed – at least. This was the technology that was readily and affordably available to people in Australia and healthcare professionals were very, very in favour of using it.

But it wasn’t always the case.

In the early 1980s, home blood glucose meters started being offered to people with diabetes to take home and use. It was the start of self-monitoring blood glucose (SMBG) – before this, it was all about weeing on a stick and analysing colours. The advent of SMBG is certainly one of those moments on the diabetes timeline that stands out as an important step in diabetes management and improved care.

At the time, there was a lot of criticism of this new-fangled device, with many HCPs believing that it wouldn’t take off, the expense was needless and that there was not enough evidence to support the ongoing subsidisation of such technology. According to a short reflection piece to BMJ in May 1998, the introduction of SMBG had clinicians believing home glucose monitoring ‘a dangerous practice’.

As insulin pumps became more popular, the same attitudes were emerging and in 2001, when I decided I wanted to start on a pump, I had to doctor shop before I could find an endo who would agree to filling out the necessary paperwork. The reasons for refusing my request ranged from ‘You’ve not had diabetes long enough yet,’ (I started on a pump almost three years after diagnosis) to ‘They’re not safe’, and ‘There’s no evidence a pump will improve your A1c’, to which I replied ‘Okay – but will it let me sleep in on a Saturday morning and present more flexible food timings and options? Because my quality of life is seriously impacted on having to freedom to live my life because of the restrictions my current diabetes treatment regimen demands and I am becoming burnout and resentful of it right now.’

I wish I could say that these ideas ceased when I started on a pump, but we still hear today people being refused pump therapy for a litany of reasons that, quite frankly, don’t hold water in most cases.

And then, the arrival of CGM was met with exactly the same reaction. ‘It will make people obsessive,’ and ‘there’s no evidence to suggest that it actually improves clinical outcomes and A1c’ and ‘It’s a gimmick – we have blood glucose monitoring that works just fine,

This, despite a recent talk I attended at ADA where endocrinologist, Steve Edelman from TYOCD declared:

Which brings us to the the Twitter discussion this week which centred around FreeStyle Libre and concerns that there is not enough evidence to warrant subsidy of the product in the UK (following a report on the device from NICE in the UK). Arguments shared in 140 characters or fewer very much centred on the lack of evidence about the Libre.

I understand the arguments: clinicians were calling for randomised control trials (RCTs) to provide the evidence they feel comfortable with before they are willing to recommend a product: they want evidence to support clinical outcomes (i.e. lower A1c).

The problem here is that RCTs are costly, take a lot of time and often don’t measure anything more than clinical outcomes. Plus, they are rarely, if ever, co-designed by the people impacted by whatever is being studied.

It was the same sentiments as when other new tech was released into the market. Often it’s new diabetes tech that provides the user with more information, more data….and more control over how and what they are doing to manage their diabetes.

The pattern repeats itself each time there is something new: clinicians are wary (which, it could be argued is their role), people with diabetes are excited. In the case of Libre, I know of many people who, after years of refusing to measure their blood glucose due to pain and intrusion, have started actively monitoring their glucose and making meaningful treatment decisions due to the ease of Libre. One woman said that it has meant that for the first time in over a decade she feels she actually has some idea of what is going on with her glucose levels which has resulted in her making smarted food choices.

As I read the tweets, I started experiencing very strong feelings of déjà vu. And I also was once again reminded of why so many subscribe to the #WeAreNotWaiting movement. And I ask: Is it any wonder that people are hacking diabetes devices and building their own systems to do what we want them to – what they are capable of doing – now?

P.S. Just a reminder that there is currently a stakeholder engagement underway following a submission to list FreeStyle Libre on the NDSS. You can read all about it here (where you’ll also find the link to take you to the survey).

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. 

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 5th 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. 

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

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

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

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

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

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

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

Excuse me, Ms Scibilia,’ she said.

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

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

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

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

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

It was the flight attendants turn to look confused.

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

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

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

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

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

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

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

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

She took the card and showed it to her colleagues.

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

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

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

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

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

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

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

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

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

Rice: evil little grains of misery.


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

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

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

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

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

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

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

DISCLOSURE

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

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

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