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Two years ago, I walked off the stage at the inaugural ADATS event feeling very shaken. I’m an experienced speaker, and regularly have presented topics that make the audience feel a little uncomfortable. I challenge the status quo and ask people to not accept the idea that something must be right just because ‘that’s how it’s always been done’. Pushing the envelope is something that I am more than happy to do.
But after that very brief talk I gave back in 2017, a mere three months after I started Looping, I swore I would never speak in front of a healthcare professional audience again.
That lasted all of about two months.
In hindsight, I was more than a little naïve at how my enthusiasm about user-led technologies would be received. I can still remember the look of outright horror on the face of one endo when I cheerfully confirmed:‘Yes! Any PWD can access the open source information about how to build their very own system. And isn’t that brilliant?!
Fast forward to last Friday, and what a different two years makes! The level of discomfort was far less, partly because more than just a couple of people in the room knew about DIYAPS. In the intervening years, there have been more talks, interviews and articles about this tech, and I suspect that a number of HCPs now have actually met real-life-walking-talking loopers. Plus, Diabetes Australia launched a position statement over a year ago, which I know has helped shape discussions between HCPs and PWDs.
I’ve gotten smarter too. I have rejigged the words I use, because apparently, #LanguageMatters (who knew?!), and the word ‘hack’ scares the shit out of people, so I don’t use it anymore. (Plus, it’s not really accurate.) And, to protect myself, I’ve added a disclaimer at the beginning of my talk – a slide to reinforce the sentiment that I always express when giving a talk about my own life with diabetes, accentuating that I am speaking about my own personal experiences only and that I don’t in any way, shape or form recommend this for anyone else. (And neither does my employer!)
I framed my talk this time – which had the fabulously alliterative title ‘Benefits, Barriers and Burdens of Diabetes Tech’ by explaining how I had wanted to provide more than just my own perspective of the ‘three B’s’. I am but one voice, so I’d crowd sourced on SoMe for some ideas to accompany my own. Here’s just some of the responses.
(Click to enlarge)And this:
One of the recurring themes was people’s frustrations at having to wade through the options, keep up with the tech and customise (as much as possible) systems to work. And that is different for all of us. One person’s burden is another person’s benefit. For every person who reported information overload, another celebrated the data.
What’s just right for me is not going to be just right for the next person with diabetes. So, I used this slide:
I felt that the story of Goldilocks and the Three Bears was actually a really great analogy for diabetes tech. Unfortunately, my locks are anything but golden, so I needed a little (basic and pathetic) Photoshop help with that.
In this fairy tale, Goldilocks is presented with things that are meant to help her: porridge for her hunger, a seat to relieve her aching legs and then a bed to rest her head after her busy day. But she has to work through options, dealing with things that are not what she wants, until she finds the one that is just right.
Welcome to diabetes technology.
On top of working out what is just right for us, we have to contend with promises on the box that are rarely what is delivered to us. Hence, this slide:
Apart from the Dex add circled in red, all the other offerings are ‘perfect’ numbers, smack bang in the middle of that 4-8 target that we are urged to stay between. These perfect numbers, obviously belonging to perfect PWD with their perfect BGLs, were always completely alien to me.
A selection of my own glucose levels showed my reality.
I explained that in my search for finding what was ‘just right’, I had to actually look outside the box. In fact, for me to get those numbers promised on the box, I had to build something that didn’t come in one. (Hashtag: irony)
Welcome to Loop! And my next slide.
And that brings us back to two years ago and the first time I spoke about my Looping experience in front of healthcare professionals. It was after that talk, during a debrief with some of my favourite people, that this term was coined:
Funny thing is, that I am now actually the very definition of a ‘compliant’ PWD. I attend all my medical visits; I have an in-range A1c with hardly any hypos; I am not burnt out. And I have adopted a Goldilocks approach in the way I do diabetes: not too much (lest I be called obsessive) and not too little (lest I be called disengaged), but just right.
It turns out that for me to meet all those expectations placed on us by guidelines and our HCPs, I had to do it by moving right away from the things there meant to help us. The best thing I ever did was start Loop. And I will continue to wear my deliberate non-compliance as a badge of honour and explain how it is absolutely just right for me!
I was speaking with someone who is thinking about starting to Loop the other day. I explained my own experiences – how simple the set-up had been (even after I’d delayed it for six months because I thought I wouldn’t be able to do it), how it is completely changed the way I think about diabetes, how much less time I have to dedicate to dealing with the daily frustrations of diabetes, how the highs and lows have been evened out and how glucose rollercoasters are a thing of the past.
‘So, you never have highs and lows? Ever?’ he asked me.
‘No; that’s not completely true,’ I said. I am frequently guilty of being evangelical about diabetes technology, and wanted to be sure that I wasn’t overselling DIYAPS. ‘After all, I still have diabetes!’
I have my range set to 4mmol/l – 8.0mml/l. It’s the mythical range that was presented to me as the ultimate goal the day I was diagnosed. It’s quite a tight range – I know that – and I probably could afford to ease up on that upper range. My target is 5.0mmol/l (it used to be 5.5mmol/l – another mythical number).
The reality is that for the very vast majority of the time, I am within that range, and hovering around that target number. If I was to check my Dex as soon as I woke up each morning, it would be boringly somewhere between about 4.8mmol/l and 5.3mmol/l.
But I still do spent time outside of the target range. The thing about Loop is that in most cases, I can explain the reasons when that happens.
I had a hypo the other night. A pretty terrible one, actually. I can’t remember the last time my Dex read LOW, but that was what I was staring at when I checked the app after my phone started screaming at me. I double checked with a finger prick and sure enough I was low. Really low. I treated (over treated) and was fine a short time later, albeit with a rebound leading to numbers I’ve not seen in a very long time.
How did that happen? Well, let’s start with the double bolus I gave myself. For some reason, I decided that the chicken soup with noodles I was eating for dinner needed not one, but two boluses. That was mistake number one. Mistake number two was not eating as much as I thought I was going to because I had a teleconference starting, so I left about half of my dinner in the bowl. Mistake number three was not realising mistake number one. And mistake number four was not doing anything to address mistake number two.
Following? Diabetes is fun!
The low resulted in an ‘eat-the-kitchen’ hypo that saw me eat six jelly beans, wait fifteen minutes and then recheck my glucose levels. Just kidding. I drank half a litre of juice, ate three bowls of breakfast cereal, chomped on a tube of fruit pastilles and then started attacking a homemade fruit bun my mum had delivered earlier in the day.
Because I was dying and all the carbs in the kitchen were the only way to prevent that happening.
The high that followed could be easily explained (see: juice, cereal, pastilles, fruit bun).
Other highs on Loop can usually also be explained quite simply. If I under bolus, I know pretty quickly, and Loop has already started doing its thing anyway to remedy that.
Stubborn highs generally mean one thing and one thing only: Renza, change your cannula. And as soon as I do, numbers come back into range fairly quickly.
Out of range numbers these days aren’t due to the unpredictability of diabetes. These days, they come down to one thing and one thing only: human error. My human error.
I trust Loop more than I trust myself. It is way smarter, completely and utterly unemotional, and an absolute workhorse, making adjustments every five minutes as required. It doesn’t get tired or busy or distracted. It understands numbers better than I ever will.
This is the cool tech I need to help me keep my diabetes moving. Of course, I still need the warm touch – the human connection – to help me make sense of my life with diabetes. But not having to think or do the diabetes numbers nearly as much gives me time and headspace I didn’t know I had. It keeps my numbers in range for the vast, vast majority of each day. And it means far fewer errors. Errors that I used to make all the time.
I am, after all, only human. Loop, on the other hand, is not.
I am not really the type to analyse reports of glucose data. I’ve never been like that, except for a brief period where I was overly obsessive. Or, as it is more commonly known: when pregnant. Then, I was all about entering numbers into Excel spreadsheets, (hey – it was the early 2000s), and I searching for patterns in the 15-20 BGL checks I was doing every day, circling anything even closely resembling a common theme in green. (Oh – green circles may always have been my thing…!)
These days, even with reports and graphs and all sorts of other fancy pants data at my fingertips, I don’t really do any analysis.
The reason I love Loop is because of how it makes me feel in the here and now. By reducing so many of the tasks I do, and my diabetes needing less urgent attention, plus dealing with fewer lows, fewer highs and fewer pretty much all the other shitty stuff, it means that my in-the-moment diabetes is far easier to manage.
Sure – I occasionally have a look at what my Clarity app is telling me, but it’s only ever the snapshot page: TIR, average glucose level and hypo risk.
Since being on Loop, my hypo risk has always looked like this:
Minimal risk. Take that in for a moment.
Diabetes – the condition that demands so much of us in terms of being able to complete highly complicated calculations factoring in pretty much every single variable imaginable and a million more, dosing a potentially lethal drug and really, no room for error.
Diabetes – the definition of a high-risk health condition.
And my personal risk of lows? Minimal.
So, remind me again: How is Loop (or other DIYAPS options) unsafe?
The day before ADA kicked off, I managed to catch a glimpse – my only glimpse this visit to San Francisco – of the Golden Gate Bridge from the back of an Uber on the way to the Diabetes Mine Summer DData Exchange (#DData19).
This is the third DData I’ve attended, and it always delivers. The speakers are brilliant and the topics on the agenda push some of the boundaries we’re used to seeing as part of the ADA conference that runs alongside. Amy Tenderich expertly emceed the day, and Mike Hoskins’ rapid fire tweeting made sure that those not in attendance had a birds eye view of the event.
This year, there was one session that really stood out for me and it was a panel session moderated by Adam Browne from diaTribe and included JDRF International CEO, Aaron Kowalksi and Alain Silk from the FDA.
For some time now, there have been efforts to move away from the idea of HbA1c being the be all and end when it comes to assessing the outcomes of diabetes management.
This doesn’t only mean in terms of the way we measure our own personal diabetes management, or the success or effectiveness of the devices, drugs or treatments on offer, it also is directed to researchers, clinicians and regulators who continue to use A1c as THE measure to determine the value of whatever they are talking about.
The push has been towards time in range (TIR) because with tools such as CGM and Flash glucose monitoring, this is something that can be easily measured and demonstrated.
The A1c is flawed – we all know that. Anyone with diabetes will have tales of A1cs going down, despite their diabetes management being more erratic, or conversely, their A1c increasing despite having fewer roller-coaster episodes. As a one-off number, it tells very little.
But while TIR is certainly one different way of having a look at just how we are tracking, with so few people actually using CGM or Flash (due to access and affordibilty), we can’t throw out other options. The A1c is not dead yet (just ask the queues of HCPs in the Exhibition hall at ADA waiting to get theirs done. Another blog post for another time…)
Also, TIR cannot be the only other measure we look towards as a substitute for A1c, and this session at DData explored more than the idea of a simple like for like between the two.
Aaron Kowalski highlighted how one of the first things people speak about when using an automated insulin delivery device is how their sleep improves. It was indeed the first thing that I noticed, and it was life changing for me. I noted that I slept like I did before diabetes!
Yet, this is not considered as part of regulatory decisions. Neither is how our diabetes experiences can be transformed. Aaron told the story of a young woman who rarely attended to diabetes tasks when around friends because she didn’t want to pull out her pump to check her CGM trace, or bolus insulin. She didn’t want to draw attention to herself or her diabetes. But being able to do those tasks by simply looking at her phone, or her smart watch meant that she felt so much better – and she did what she needed to do when she needed to do it. How are those improved experiences being documented and considered as part of why something is valuable?
In his earlier talk, Alain Silk from the FDA noted that one of the challenges when it comes to technology regulation is too much regulatory and contractual burden and not enough innovative devices getting into the hands of people with diabetes. The DIY movement manages to sidestep that first part and that means that we do have get to have those devices – those transformative devices – in our hands a lot sooner. Our experiences – which all seem to be positive – and our diabetes outcomes – which all seem to report improvements – really should count for something.
Surely one of the goals we are all seeking (and when I say all, I mean everyone involved in any aspect of diabetes) is to increase the time we DO NOT spend on diabetes anymore. At DData last year, DIY-er Justin Walker said that he believes he has gained back an hour a day since using an automated system. That’s seven hours a week. Over a year, that’s more than a total of fifteen days we get back from diabetes. Add that up over a lifetime of diabetes. It’s significant.
Aaron said that one of his goals as CEO of JDRF is to ‘…take diabetes out of our lives as much as is humanly possible.’ When devices allow us to do that – even if it’s just one little bit – that should be assessed as meaningful.
I have been thinking about this session a lot. In fact, anyone who has asked me about ADA has received a lecture on it. My poor boss got an earful when I returned to work on Monday. I’m pretty sure he regretted asking how I’d gone in San Francisco after I launched into a tirade about how we are simply not listening enough to people with diabetes when it comes to just what we are measuring as being valuable to us.
The problem with adding TIR to A1c as a way to assess devices, drugs or other therapies is that we still are focusing on nothing more than numbers. Sure TIR may be more robust and not simply a snapshot average, but it still attributes our success to a number.
When I talk about why Loop has been so transformative to me, I do mention TIR. But the biggest bangs for my buck – the things that really ring true – is not how much time I spend between two number goal posts.
No.
It’s about how much better I feel about my diabetes. It’s about how much less time, less worry, less stress I am forced to dedicate to diabetes. It’s about how the hypos I have these days take three minutes to deal with rather than three hours. It’s about how less stubborn, and how less frequent those highs are. It’s about the much lighter shadow diabetes casts over my family. It’s about sleep – oh dear god, it’s about sleep! It’s about how easy it is to carry out those required tasks and how little they interfere with my day. And it’s about the time I have been able to claim back as my own.
The footprint of diabetes is so far smaller these days than ever before. THAT is what is meaningful. THAT is what I measure. THAT is what it means to truly go beyond A1c.
DISLCOSURES
I attended ADA as part of my role at Diabetes Australia. My economy flights and accommodation have been covered by the organisation.
Thanks to the team at Diabetes Mine, who kindly provide diabetes advocates with the opportunity to attend their DData Exchange at a significantly reduce cost.
I’m back on deck at work today after a whirlwind ten days in Europe for meetings and a conference. I started in Amsterdam, then flew to Florence and finally flew to Copenhagen (via Pisa). Those ten days were busy, long and interesting. And, perhaps best of all, packed full of others from the diabetes community.
Spending time with others living with or around diabetes is restorative. I know I get jaded at times, and burnout – in all its forms – takes its toll. I’ve been feeling a little advocacy burnout lately, and that has the tendency to make me feel that I need to step away from diabetes for a bit. Plus, I wasn’t sure if I could be bothered with the inevitable onslaught that comes when these sorts of activities happen.
Instead of hiding away (which is what I half wanted to do), I got on a crowded plane to Europe to spend almost two weeks ‘doing’ diabetes advocacy in different forms. By the time I got to Nijmegen – an hour and a half out of Amsterdam – for HypoRESOLVE I was already feeling better. I felt the darkness of burnout slip away as I sat in meetings, speaking up and providing PWD input into the project. And there, alongside me, were others living with diabetes. We leaned into each other, stepped back so another could take their turn, and supported each other to feel comfortable and relaxed. We reminded each other that there was a reason we were there – because people with diabetes must have a seat at the table and that we must be heard. We lived, breathed and ate ‘Nothing about us without us’ throughout that meeting and by the time I boarded a hideously early flight to Florence for the next meeting, I was raring to go – further boosted by a diabetes in the wild encounter.
Two days of meeting in Florence with friends and peers from the diabetes community talking about our experiences in the diabetes community continued to see my mojo return. We spoke about difficult topics, how the community works best and the place everyone has in there. I was reminded that the community ebbs and flows, and that it is not static. Sometimes, that rut that I find myself in means I forget that all communities change and grow and develop. This is actually a positive, because as it shifts, more people come in, some people step away (for good or just a bit), we reconfigure how it fits us, and diabetes makes sense in new ways.
Some much needed downtime meant that I could reconnect with peers and feel myself being completely and utterly filled up in a way that only comes when surrounded by people who get diabetes and this weird diabetes space. We don’t all have diabetes – we represent different corners of the community, but we know diabetes in a way that is particular to those who live close to or with it. Our dinner after the second day of the meeting saw us finally able to breathe and take some time out of diabetes speak, and instead revert to a steady flow of laughs (shrieks, actually).
The next day, a friend from Italy just happened to be in Florence. We met up and I met her family, including her son who has diabetes. As we drank coffee just over the Ponte Vecchio, diabetes was spoken about a bit, but mostly, I got to learn about this young man who is clearly going to take on the world. He is smart, funny, delightful and inquisitive. His questions about Loop were intelligent – far more so than anything I would have thought to ask before I started using the tech! I hugged his mum as we said good bye, noting that she had just introduced someone else to our tribe.
By the time I arrived in Copenhagen (at 2.30am thanks to high winds in Florence, a bus ride to Pisa to take a diverted flight and some first-rate Italian disorganisation), I was exhausted, but at the same time felt more enthusiastic about the diabetes space than I had in some time. The next morning when I arrived at the conference venue, I was ready for a packed day of speakers, and to do my own presentation in the afternoon. I looked around and saw that there were a number of people living with and around diabetes that I knew, as well as a whole lot of new faces in there. The event was for HCPs, but as always, those of us with a truly personal connection to diabetes searched each other out. I met members of a support group known as ‘Diabetes Dads’ who meet regularly to speak about their kids with diabetes. They were there to support their friend who was speaking about his Looping son.
At lunch, I sat at a table with two PWD I knew. Two other people joined us and we quickly found out they too have type 1 diabetes. The conversation flowed – we understood each other, and our shorthand of diabetes speak easily fitted into our stories. We nodded as we heard stories that sounded familiar, even though they were being told by someone from another country who, until we sat down with our overflowing lunch plates, we had never met before. One of the women at the table had asked during an earlier session about how to wear the devices required for Loop, and I pulled out my RileyLink and showed it to her. She held it and weighed it in her hands. She’d wanted to know how to wear it with a fitted dress and I was able to show just how easily I could tuck away everything, even with the straight dress I was wearing for the day.
We may have all been there because of an interest or curiosity in DIY diabetes, but there is far more than that to draw us together. Just like as at the earlier meetings. As always, diabetes brings us together, but it’s far more that keeps us that way.
By the time I boarded the Dreamliner at Heathrow, all traces of burnout, and questions about how to manage in the sometimes tricky maze of diabetes community had completely subsided and were replaced with the reminder that when we find out tribe and surround ourselves with them, the burnout is replaced by feeling supported. And that’s how and why we show up. We do what we do, we show up, we speak up and we try to get stuff done. Ten days of that and I feel so much better. Which is good. Because as it turns out, those ten days are just the start …
DISCLOSURES
My flights to Amsterdam and accommodation while in the Netherlands was covered by HypoRESOLVE. I am on the Patient Advisory Committee for this project. My flight to Florence and two nights’ accommodation were covered by Lilly. I was in Florence for a DOCLab Advisory Meeting. My accommodation in, and flight home from Copenhagen was covered by the Danish Diabetes Academy. The Academy invited me to speak at their Diabetes DIY Movement conference.
On Saturday I was invited by Diabetes Victoria to be part of the diabetes technology panel session at their Diabetes Expo. (Disclosures at the end of this post.)
The session was on the program as being about ‘The ins and outs of diabetes technology’ and promised to offer perspectives from people with type 1 and 2 diabetes, a researcher, endocrinologist and CDE.
The panel involved two of my favourite endocrinologists – Professor Peter Colman and Professor David O’Neil. I have known both for a number of years and they are, without a doubt, absolute giants in the diabetes clinical and research world. I love that they accept and acknowledge there are limitations to current tech and are not afraid of DIY solutions. Even more, I love how they are very respectful of the expertise of PWD and understand that choice is essential. How wonderful to be on a panel with HCPs who regularly deferred to the PWD sitting alongside them to answer questions and further the discussion.
The session got off to a slightly rocky start as we diverted a little from the designated topic, but we got back on track eventually with the panellists being able to share their experiences and views about just where we are with diabetes tech in 2019, how it can help people living with diabetes, the frustrations tech can lead to and what we hope for the future.
I enjoyed the question about whether tech makes life easier for PWD. I honestly believe this is a double-edged sword – technology is designed to make our lives easier and that’s what it promises to do on the box, but the reality can be very different.
This is something I speak about when explaining my love/hate relationship with tech. Getting things right so that I don’t want to tear devices from my body and throw them out the window takes time. My first encounter with CGM was shocking and I swore to never use it again. The first sensor insertion caused so much blood that the Medtronic rep helping to teach me how it all worked actually gasped and then claimed never to have seen anything ‘so scary’ before. That was not reassuring. The words scary and gory weren’t on the box.
Then there was the data overload, unstoppable alarms and inaccuracy. How was this device meant to revolutionise my diabetes treatment (thatwas promised on the box!) if it was inaccurate, caused me to bleed everywhere and caused me so much frustration and distress that I never wanted to see, let alone use, CGM as part of my diabetes management. Ever. (Fast forward a number of years and thank god that’s not the case anymore!)
There was a lot of talk on the panel about how far we’d come and how lucky we are to be living with diabetes in 2019 rather than in 1959 or 1969 or anytime other than now. We were reminded of glass syringes that needed boiling and needles that needed sharpening. And days before home glucose monitoring, back-pack sized insulin pumps and the good old days where things were really not so good. Just old.
I won’t for a moment deny that we have come leaps and bounds since those days. In the twenty-one years I’ve lived with diabetes there have been lots of tech changes and improvements.
We were asked by the panel moderator how we feel about tech in 2019 and the answer from other panellists was that they feel hopeful and appreciative. The CDE on the panel has lived with type 1 diabetes for thirty-seven years and obviously has seen a lot of changes in that time. The two endos on the panel said that they feel that there have been huge strides made in tech – rapid and very significant in recent years.
When it got to me, I acknowledged what the other speakers had said. ‘I am really pleased to be living with diabetes in 2019,’ I said. ‘I use tech and I generally do love that it is available to me to use, despite the frustrations.’ I paused and looked around the auditorium. I had more to say and I had a split second to decide whether I just left it there, saying what I felt people expected me to say. Or I speak the truth – my truth.
I lifted the microphone to my mouth. ‘But actually, I’m angry,’ I looked around again, settling my gaze on the group of people in the room I knew. ‘I’m angry because we are where we are, and PWD are being given a rough deal.
‘Technology should be easy and accessible and affordable for everyone and it is not. I use a DIY system that means that I am the least burdened by diabetes than I have ever felt. But to get this system, I had to build it myself. It is unregulated, it is experimental. And people like me, doing what we do are largely met with scepticism and suspicion from HCPs who don’t understand the technology. We are accused of not taking our safety seriously – often through passive aggressive comments from not only HCPs but also device companies about the only safe devices being those that have been through RCTs and regulatory bodies. When we talk skin in the game, those of us who have these devices actually attached to our skin have the most at stake, so suggesting we don’t care about safety is ridiculous.’
I paused long enough only to take a breath.
‘The technology is available to do what I am doing, but it takes so long for device companies to get new things to market and through regulators, and even then we are stuck with set targets and limited customisation. We are languishing with older, nowhere near as useful tech. We are expected to accept that and just deal with it and be grateful for it. THAT is why there is a hashtag and a movement called #WeAreNotWaiting. That is why I am not waiting. And it’s why I’m a little angry.’
I don’t know everyone who was at the tech panel session on Saturday, but there was a group that I did know. They were the ones who applauded after my little rant. When they hear a group of panellists claiming that we are fortunate because the current available tech is so much better than what was available 70 years ago, they shrug their shoulders and know that there is more. They are the ones who have started down the DIY road or the Afrezza road (as one audience member explained).
We should not feel that we have to be appreciative, or that what is offered is the best there is. I am so, so glad that there are people out there who have not been prepared to just accept what was on offer, and instead go out there and make better tools – make the current tech better. They were not satisfied, and their smarts and determination has meant that many more of us don’t have to settle for the vastly imperfect tools available. Sure, DIY solutions aren’t perfect either, but they are certainly better.
I’m not really sure how my comment was taken by the broader audience. I suspect that a lot of them weren’t too sure how to take the woman waving her hands about, even after I promised them that I’m really not angry all that much and that I am actually quite delightful (not sure I fooled anyone on that point).
Probably the message that resonated most throughout the panel discussion was that choice is important and that there is no one size fits all solution to diabetes technology. That is definitely true. But that extends to there being no one size fits all to how we feel about the overall tech landscape. And the way I feel is that I am not willing to accept the status quo.
DISCLOSURES
I worked at Diabetes Victoria from September 2001 until January 2016. I was not involved in the planning of the 2019 Expo. I did not receive payment to speak at the Expo.
Hi, my name is Renza and I never update software, operating systems, apps or anything that needs updating on anything. If I needed some sort of personal software update each year upon my birthday, I’d still be running whatever I was using when I was seventeen. I don’t have auto updates set up because 1. I’m an idiot and, 2. I used to, and once that caused problems with…something. Can’t even remember what, but obviously it left some deep scar somewhere and now I won’t do it again.
Most days, this apathy makes no difference to anything at all. I eventually get around to updating and on I go. No big deal.
Except for when it becomes a big deal. Because then I find myself #LooplessInMelbourne.
On the morning of Good Friday, my Riley Link died. Let me set the scene here by saying my RL had been dying for some time. This was not something that ‘just happened’. It had started needing a charge around mid-afternoon as well as the overnight charge it had been getting since I started using it in August 2017.
But on Good Friday, it decided that was it. No more charging. My Loop turned red and that was it. RL dead. Done. Gone. Finished. Just as it had been warning me was likely to happen for a few weeks.
Now, someone smart would have thought this through as soon as the RL started to need extra charging, and understood the following: 1. RL needs replacing, 2. make sure back up is available, 3. double check Loop docs for how to swap out old RL for new one, 4. follow instructions.
I got as far as step 2, and that was it. I was supercilious in my back-up planning skills and took my spare RL out of my diabetes cupboard, leaving it on my desk as though that was enough to miraculously sort everything. Idiot, thy name is Renza.
On that (not so Good) Friday I put all thoughts of sorting it out of my mind and set about my day. It was a public holiday, so I figured I’d fix it all later. I also thought it would be just a matter of switching RLs over.
Not so much.
Around midday, I sat down and read the Loop docs and immediately realised that I needed to update my Loop app to use the new RL. I’ve rebuilt the app before and I know it is a simple process.
I scanned through the docs and saw that I needed to make sure that all operating systems and apps were up to date. Suddenly every single update notification that had popped up in the last year flashed before me. So did every post, plea, warning to update everything from Katie DiSimone on the Looped Facebook page.
I set to updating my Macbook, iPhone and Apple Watch. Easily done. Then, I came to Xcode. And the wheels fell off. (Xcode is an app and needed to build Loop.)
I don’t think I’ve updated Xcode since I loaded it onto my Macbook, back when I first built Loop. I do remember it taking FOREVER to upload and install. The update took longer. The first time I tried to update, it took almost three hours to not work. The second time, it took four. By this stage it was late on Friday. Clearly, I was paying no attention to what was going on because when I saw that it had finished updating, I assumed that all was good and off I went to rebuild my Loop app.
Building Loop is simple because the instructions have been written for people like me in mind. Technologically hopeless, but eager to understand. They are step by step and, honestly, if you follow every step as laid out, you cannot go wrong.
So, off I went. Step by step. And then…
Red error message.
I read the errors page and tried all the suggestions, but the same error message came up. It was getting late and I was exhausted, so at 1 am, I went to bed. I was over it and figured that fresh eyes in the morning would do the trick.
I woke on Saturday and with those fresh eyes I realised straight away that Xcode had not updated. That’s right – the second attempt had failed too, and I had been trying to rebuild Loop using an outdated version.
As it turns out, third time’s a charm and while eating Easter lamb at my in-laws, Xcode updated successfully.
After lunch, I opened the new version of Xcode and followed the instructions to build Loop. That took under 5 minutes and no brain power or tech know-how (from me, that is – a lot of people had used a lot of brain power and tech know-how to make it so easy for me).
Shortly after, the Loop app appeared on my phone. I entered all my relevant info (another 3 minutes work from me) and then almost straight away my Loop turned green.
And I’ve been happily Looping ever since.
So, here’s the take home: Keep everything updated. If I had done that, the rebuild of Loop would have taken a total of 15 minutes. And most of that would have been sitting and waiting for Loop to re-install on my phone.
I was telling someone about this whole (actually rather boring) story the other day and a little smugly they said ‘That’s why I won’t use a DIY system. Sounds like a nightmare. They can’t be relied upon.’
But actually, that’s not the case at all. What is unreliable is me and my inability to do the basic updates that all our devices require. Our commercially available apps (such as Dexcom) require us to update occasionally. In twenty months of using Loop, I’ve updated the app once (when I got a new iPhone).
Being #LooplessInMelbourne wasn’t really a big deal. It did, however, remind me why I am a huge fan of DIYAPS as the right tool for me right now. And it also reminded me that I really am not much of a fan of DIYDiabetes. That’s really not for me at all!
Loop’s back, baby!
Last year, I was invited to the Australian launch events of two insulin pumps. Within a month of each other, the YpsoPump and Cellnovo pump were introduced into the Australian market: a market with a huge appetite for something new. Although Cellnovo had launched softly the previous year, the Australian distributor seemed to be increasing their business and had the pump’s inventor, Julian Shapley, in the country to give a presentation and answer questions.
At both events, we were wined and dined, and the latest bells and whistles of these two new offerings were confidently and excitedly shared with us. I listened carefully, keen to hear not only about the technical specifications, but also about the customer service that would be offered to those choosing these devices and their plans for the future. I’ve learnt over the years that reading glossy brochures only gives one part of the overall picture of using a particular device, so I was looking forward to asking those questions that give a much better idea of what is going on.
At some point during each of the events’ proceedings, I asked the same question. I wanted to know how these companies were safeguarding from these devices being launched on the market with great fanfare only to see them disappear after people had started using the very products in front of us.
Of course, I was assured and reassured that the companies were here for the long-haul and that they were future-proofing themselves by insuring they were preparing for the technology we all expect. Closed loop systems were coming; integration with CGM was an almost done deal; their algorithms would be better, smarter than anything we had seen before. And yes, they absolutely understood the concern I was expressing at the thought that just as quickly as their device had won our hearts and minds, it would disappear from market altogether. Of course, of course, of course that was not going to happen and I shouldn’t for a minute even think that was how things would turn out.
I listened. And I believed them.
Last week we heard that Cellnovo was ceasing production of its pump and all current users would be transitioned onto different devices. This played out over a couple of days. The first announcement was that Cellnovo was going into administration, but I wasn’t ready to shut the coffin lid just yet – we’d seen that happen before. But then, a mere day or two later, the announcement came that all manufacturing and commercial activities would cease, and that no new PWD would be started on Cellnovo products. Coffin. Nailed Shut.
Let’s put aside any opinions of the Cellnovo pump, because that’s not what this is about. I know there were some people who really weren’t fans of the device. My limited interaction with it left me interested, but not keen to slap one on my upper arm and call it my new pancreas. But I know some people who love it and have found it to be the right insulin delivery device for them. My diabetes; my rules and all that.
I also know a number of people who started using Cellnovo as their first pump. In Australia it was the closest thing we had to a ‘patch pump’ and they liked the idea of not having to deal with centimetres of tubing. When I wrote that Cellnovo would be launched here, I had a number of people reach out in great excitement. With Omnipod repeatedly stalling getting through our funding model, this was as good as they were going to get to the device they thought would be best for them.
And so, Cellnovo has won the heart and minds of some people. Just as mine were won over by the Cozmo and Animas pumps. And when they are taken away from us, our hearts break a little.
We learn to tolerate and accept – and sometimes even love – these devices. I wear mine as close to my heart as I possibly can, hearing it gently whir as it delivers insulin, sometimes in perfect time with my heartbeat. We do what we can to make them fit with us seamlessly. We know they will never really be part of our body; but we do what we can to work with and around them.
There is nothing and there is no one who I have ever been as literally attached to as the devices that are connected to my body 24/7 for the last eighteen years. I have loved them and hated them in equal measure as each day I try to accommodate them as best I can while at the same time appreciating and acknowledging what they do for me. And I hear this from others who have been wearing insulin pumps (and other diabetes devices) – some for years, some far more recently.
So, with this in mind – and this is something many of us have written and spoken about – and what played our last week, the almost cavalier attitude to my question at the event last June has left a sour taste.
Let me be clear here: this isn’t directed to the team at Medical Specialties Australasia (the Australian distributors of Cellnovo). They have been nothing but professional, friendly and approachable, and from the first time I met with Aaron Crook, it was clear that they were keen to make a success out of things and were pleased to be offering more choice to PWD in Australia. It’s possible they only found out about all of this a short time before the announcement was made. And really, it isn’t necessarily about Cellnovo. They are just the latest in the casualties of medical devices, and now join the ranks of Cozmo, Animas and Asante pump and the Navigator CGM. I am sure that they never wanted this to happen.
And yet, it has.
Of course, the closure of a business leaves a mess, and many casualties in its wake, but perhaps those that will feel this the most personally is PWD – the people who have come to rely on these devices to survive. We are already doing all we can to live with a condition that demands so much. We struggle to find what works for and alongside us and when we do, we want to keep it forever. Our own pancreas already decided to stop working; having to contend with the one we chose as its replacement disappearing as well seems more than just a little cruel and unfair.
Disclosures
I have none that are relevant to this post. My travel and accommodation for both launch events were covered by MSA and Ypsomed and were declared at the time.
Last month, I clicked over eighteen years of wearing an insulin pump. Every day in those 18 years – that’s over 6,500 days – there has been a cannula inserted into the skin on my stomach, sides or thighs. And for pretty much all of those days, a pump has been housed down my bra. (When I first started pumping I used to wear it on my waistband, but tired of the attention that drew so shoved it away. Out of others’ sight; out of others’ minds.)
Add to that there is the CGM I have worn on and off for the last eleven or so years – and for the last five, it’s been there pretty much every day. Oh – and about 18 months ago, a RileyLink also became a permanent fixture, also shoved down my bra. It’s an out-and-out diabetes tech party down there.
So you would think that after all this time, it is no big deal seeing, feeling, or acknowledging these devices and how they are housed on this body of mine. You would expect that I would be completely and utterly accepting of the devices by now, and how to accommodate them on my body.
And yet, I’m not.
Now, I need to say that I love my diabetes technology. I understand that it makes my life with diabetes much easier. I also understand – and never forget for a moment – just how lucky I am to have it. I absolutely wouldn’t be without it and I know that for me it is the best possible way to manage my own diabetes.
But thinking for a moment that I forget that I’m wearing these devices is wrong.
I find it fascinating when I hear people say that for their child/partner/friend (or for HCPs, PWD they see) that their diabetes device is just part of their life, it’s normal, it’s just part of them.
No. It’s not. My devices are additions because a bit of my body is broken and doesn’t do what it is supposed to do. We may not make a fuss about it or just seem to tuck them away (or leave them out on show), but do we really consider them just ‘part of our body’?
I don’t think I will ever be fully comfortable with how they feel or look on me. There is some serious body image stuff going on when I see the tape gripping these devices on to me. When I throw on a bathing suit for a day at the beach, the devices I need to consider and the way they are on show make me feel painfully awkward.
They are a reminder every time I see them – every time the tubing nearly gets ripped out when I go to the loo or catch it on a doorknob; every time I get too close to the doorframe and knock my CGM; every time I’ve put on a bra that doesn’t really work and my RL falls out; every time my pump and RL shift a little and become starkly obvious – that it is not normal to wear a pancreas on the outside of one’s body.
It’s a reminder every time my kid snuggles into me when she is sitting on my left side and leans her head on my arm. ‘Your diabetes is sharp’, she says to me and we have a little giggle as she wriggles around until her head finds real estate not taken up by Dexcom. Or in bed at night, as I go to roll over and find I can’t move because my pump has found its way under my husband. It turns out that it’s not just me needing to accommodate my external pancreas, making me even more conscious of its presence.
The beeps and buzzes and vibrations that these devices emit means I make noises different to others. The way that sometimes it’s just impossible to ignore the constant reminders and just accept it all as ‘part of me’.
Perhaps the only time I get close to not feeling the constant reminders of my tech is when the people around me are also wearing these devices. We spy a CGM on someone’s arm, pump tubing winding its way out from under someone’s top or hear the tell-tale beep of some sort of diabetes technology and we can ignore it because it’s not our own and everyone else is doing it too!
We do a lot to normalise the realities of diabetes. We do that for our own benefit, but I know that I also do it a lot to limit concern of those around me. This is one of those things I do to minimalism how diabetes affects me and to normalise something that is…well, not normal. I would never make a big deal about how I feel about wearing this technology because I sound whingy and precious, (possibly the alternate title for this blog post). But don’t for a minute think that you can dismiss it as not a big deal or just part of us. Because it’s not and never will be.
Devices on the beach.
We all do a good job at undermining ourselves at times. We use a four letter word that diminishes what we are doing, and limits the value of our experience and expertise. That four letter word is ‘just’.
In diabetes, we hear it all the time: ‘Oh, I just have type 2 diabetes’ as though it is insignificant and doesn’t have any challenges. ‘I’ve lived with diabetes for just a couple of years’ because we think there is only currency in decades of living with the condition, when really any length of time with diabetes is meaningful.
And we are all about minimising our experience when it comes to the treatment of our diabetes. ‘I just use diet and exercise to manage my type 2 diabetes’ or ‘I’m just on tablets’ or ‘I’m just on injections twice a day’ or ‘I’m just on MDI’. The list goes on and on. And on.
I realised just how ridiculous we have become with this when I heard myself, during a conversation with a fellow Looper, ‘Oh, I just use Loop’. (More on that later…)
At the Ascensia Social Media Summit at ATTD we spoke about this, specifically how there is almost a stigma within the diabetes for those seen to not be using the shiniest and brightest and newest of technologies. It seems that some people almost feel embarrassed if they are not constantly updating their technology toolkit with the most recently launched product.
The idea that anything that we are using today is ‘yesterday’s technology’ is wrong. Blood glucose monitoring can’t be ‘yesterday’s tech’ if it is what most people are using to track their glucose. And syringes and pens can’t be considered the ‘old way to deliver insulin’ when that is how the vast, vast majority of inulin-requiring people with diabetes get insulin into their bodies. Plus, every single one of us using a pump must be able to deliver insulin this way because machines break.
Somewhere in discussions about our treatment technologies, we seem to have forgotten that, actually, not everyone wants to be using the latest kit. And that is okay. There is a spectrum of diabetes technology, and as long as we are on it somewhere and managing our diabetes the way that works best for us, then elephant stamps all around!
There is clearly an over-representation of people at one end of that spectrum dominating on and off line conversations. Spend a couple of hours in a diabetes Facebook group and it would be a reasonable assumption that most people are wearing pumps and CGM. But that’s not true.
And it could appear that DIYAPS is the way to go for most people with T1D, when the fact is that numbers are relatively low. It’s hard to estimate exactly, but there may be somewhere between 2,000 and 3,000 worldwide how have ‘built their own pancreas’. That is just a drop in the type 1 diabetes ocean.
It’s fantastic for those of us interested in this technology to be able to (virtually) congregate and talk amongst ourselves. I learn so much from my peers in these groups – just as I have with all aspects of life with diabetes. The lived experience continues to trump any other way of learning about diabetes.
Of course, that doesn’t mean that we shouldn’t be talking about technology used by limited numbers. Of course we should. We want others to know about it so they can make an informed choice about whether it may be right for them. We want our HCPs to know about it and to support those of us using all sorts of technologies and treatments.
Where it becomes problematic is when there is the misconception that this is the norm. Or when those not using the newest technology feel that they are wilfully doing diabetes the ‘old way’. It’s unfair to think for a moment that those who are not using the tech ‘don’t care’ enough about themselves – especially when decisions are made based on a very good understanding of what is available and what they have decided works best for them.
So, back to my ‘Oh, I just use Loop’ comment. It was directed to someone far more technologically advanced than me; someone who runs all sorts of other programs alongside their DIYAPS. They generate lots of reports and make lots of changes and seem to have far more bells and whistles than I even knew were available.
I nodded as they told me all they were doing and then, when they asked me how I manage my diabetes, I answered that I just use Loop. I heard myself saying it and stopped and corrected myself. ‘I mean…I use Loop. It works for me. Perfectly.’
We don’t need to make excuses for doing diabetes our own way. If we truly have choice (which I know is not always the case), and we have made the choice based on what we believe to be the best possible treatment and technology for us at that moment, then surely that’s a great thing. We shouldn’t ever be made to feel less committed to our own health and wellbeing. That’s not how it works.
DISLCOSURE
I was invited by Ascensia to co-chair the Diabetes Social Media Summit at ATTD (#ATTDDSMS). I did not receive any payment or in-kind support from them for accepting their invitation. I have co-written a piece for the blog, however this was not edited (apart from inevitable jet-lag-induced typos) and all words are those of mine and the piece’s co-author. You can read that piece here.
Diabetogenic 