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I am old enough and smart enough to understand the way women are meant to respond to the lies of advertising. We are constantly told –  and meant to believe –  we are not enough. Our bodies are not slim enough, our skin is not taut enough, our thighs are not firm enough, our hair is not shiny enough, our arms are not toned enough.

At my current age, I’m meant to be trying to erase the signs of ageing, willing wrinkles away with an assortment of lotions, potions and minor (and major!) cosmetic surgery, plus trying somehow to regain the body I had twenty years ago.

Thanks to a mother who pointed out the deception of advertising from when I was a young girl, refusing to allow us to buy into the spin, plus a healthy dose of political and feminist teachers at school, all combined with much reading as a teen of Naomi Wolf, Susie Orbach, Gloria Steinem and Betty Friedan, and then later on, Kaz Cooke’s Real Gorgeous, I manage to not be too overcome with my body image issues and feelings of inadequacy. Mostly

My body is forty-four years old. I’m okay with looking in the mirror and seeing a reflection that reminds of me that.

I see the lines around my eyes and am not too startled because I know they have formed thanks to many years of laughing so hard that I can barely breathe, cried so hard because of loss that has rocked me to my core, walked for miles through cities while the sun has shone brightly (and I didn’t reapply my sunscreen).

I’m okay with my body not looking the way it did when I was twenty. I quite love the evidence that I carried and delivered a healthy baby – there is a lot of evidence of that! My far-less-than taut stomach points to that as much as the scar along my lower abdomen from where she escaped.

Surgery would be the only way to return to the pertness destroyed after twenty months of breastfeeding. But quite frankly, I’m kinda proud of the signs from that, because initially it was such a challenge for me to learn to breastfeed, and then manage the subsequent hypos. There should be some proof of the effort that all took!

I can deal with my skin not glowing as it did when I was younger, and the signs of a late night being far more visible than when I was in my early twenties. Those days I could manage being out until the early hours, and then be up bright and early for work the next day with nothing more than a coffee and a slick of my signature red lipstick to deal with the lack of sleep.

And the occasional grey hairs that appear around my hairline are met with acceptance – and gratitude that I can vainly still pluck them out because they are so intermittent that it’s easy to do.

I once wrote that ageing is a privilege. Not only do I believe that, but each and every additional year I live with diabetes, I believe it even more.

I just wish that while I acknowledge the miracle that is my life today – because had I been diagnosed with diabetes a mere seventy-seven years earlier, I would not be alive today – I could be more comfortable and accepting with how I wear diabetes on my body and in my mind.

It makes no sense that I am still uncomfortable of the visible signs of diabetes on my body. But that is how I react most days. The devices I wear still make me wince at their sight. I try to avoid looking at the scars and marks and signs of those devices on my body – all over my stomach and hips. I notice myself more aggressively washing those parts of my skin, and wonder if I am trying to scrub away the signs of diabetes.

In the mornings when I get dressed, I hide my pump and RileyLink away as fast as I can, tucking them into my bra and throwing on something over the top so they are not in my line of vision as I stand at the mirror applying my makeup. I’m not ever going to be one of those people who wears her pump on her hip, proudly showing it to anyone who asks.

And even though my Dexcom is on my upper arm, I prefer the cooler months when I can hide it away from sight under layers of Melbourne black.

Today, I spoke with a mother of a teenager who wanted to know how she could convince her daughter to agree to wearing her pump again. ‘She hates how it looks on her,’the mum said to me. ‘When will she get over it and just realise it’s the best way for her to manage her diabetes?’And I didn’t know what to say because I am a woman in my mid-forties and I am not ‘over it’, seventeen and a half years after first attaching an insulin pump to my body.

The only thing I could say was that it can be a difficult thing for some people to accept – and that I too struggle with it. But that the compromise for me is that as much as I hate seeing diabetes on my body, I’ve accepted that the devices make me feel and manage my diabetes better with them there. But understanding that takes time. Maybe age helps too.

My ageing body is something I can wear with pride because it tells the story of my life and what my body has managed to do. Whereas my diabetes body points to parts of me that are broken. And can’t be put back together, no matter how hard I try, or how hard I try to convince myself otherwise.

Have you seen Body Posi Betes? It’s the brainchild of my darling friend Georgie Peters who is doing everything she can to promote body positivity in the diabetes space. You can join the Body Posi Betes Facebook page here and follow the Insta feed here. I’m going to binge through all the posts again right now, because truthfully, I need a bit of diabetes body positivity right now.

Usually hidden from (my) sight.

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Sometime last week, I marked a year since I started using Loop. Measure for measure my diabetes is a lot nicer to deal with these days and I know that I have settled into the comfort that comes with something that just seems to be working. The predictability of loop seems to fly in the face of all that is diabetes, so I do admit to not getting too comfortable with it all – even after fifty-two weeks of seemingly boring diabetes.

This was startlingly obvious to me when I reflect on my last two very busy weeks. As I ran around the Adelaide Convention Centre last week, not once did I think about Conference Hypo Syndrome. As I flew from Melbourne to Sydney to Adelaide and back home to Melbourne, I didn’t think, even for a moment, about travel lows and highs. And throughout the busy days, and the long busy nights of the two weeks – which involved hours sitting still in sessions and meetings as well as times of a lot more activity – apart from a cursory glance at my Loop app, diabetes didn’t bother me.)

It has been almost 12 months since I first spoke about Loop at a health professional conference, and it’s fair to say that I am still slightly traumatised by the memory of that session. I know that for the vast majority of the people in the room on that rainy day in Sydney, most had never even heard of the world of DIY diabetes, and the idea that a forty-something-year old woman with diabetes was standing before them talking about how I’d built my own pancreas was more than a little terrifying. And they let me know about it.

There was disbelief, horror and alarm that I was telling my story. I repeatedly heard people tell me that this was irresponsible and unsafe. And a number of HCPs were shocked, worried and appalled that the instructions for others to do what I had done were freely, easily and openly available online. (My cheeriness about open source wasn’t mirrored by most at ADATS.)

I’m pleased to say that wasn’t the response last week, during or following the DIYAPS symposium ‘The Brave New World of Diabetes Technology’, which featured me sharing about my own personal experience of why I decided to, and my first year of Loop; David Burren speaking about the technical aspects of the DIY technologies, and Cheryl Steele encouraging HCPs to support people using these technologies. The formal presentations were rounded out with Greg Johnson launching the Diabetes Australia DIY Technologies Position Statement.

It was standing room only, and great (and surprising) to see a number of endocrinologists in an ADEA symposium. We deliberately programmed the session to have a lot of time for questions, because we knew there would be lots! And there were.

There were a number of questions from the audience about what the role of HCPs is if someone comes to them and says they are, or they want to start, looping, and I think the consensus is that while we don’t necessarily need our HCPs to understand the intricacies of the specific technologies, and we are very clear that we don’t want, expect or need them to be able to help us build our loop, we need them to acknowledge that DIYAPS is a reality for more and more people with diabetes.

The overall feeling in throughout and following our symposium was of interest and curiosity. But even more, a desire to truly learn and understand more about the #WeAreNotWaiting world and where HCPs fit into it all, and how they can support those of us making the choice to loop.

The shift in the attitudes of health professionals is significant and important, and it extends far beyond DIY diabetes technologies. Because it all comes back to the whole idea of choice. There will never be only one right way for all people with diabetes. It doesn’t matter if we are talking about the foods we choose to eat, the technologies we choose to use, where we decide to see how HCPs, our decision to wait or not wait, or the support and services we choose to link in with. We need to have the space to do what is best for our diabetes. We need the freedom to make the choice. And we need our HCPs to support our decisions.

I have already shared this, but in case you missed it, the three presentations from our symposium can be watched here:

DISCLOSURES

My travel and accommodation to ADC was funded as part of my role at Diabetes Australia. Thanks to the ADS and ADEA for providing me with a media pass to attend the Congress. 

The day before the Australasian Diabetes Congress (ADC) started, Ascensia Diabetes Care brought together a number of Australian diabetes blogger and advocates for the Australian Diabetes Social Media Summit, #OzDSMS – an event that promised to tackle some interesting and difficult topics in diabetes. The social media component was relevant for a number of reasons: the #TalkAboutComplications initiative that The Grumpy Pumper would be speaking about had been (and continues to be) driven on social media; and we really wanted to share as much as we could from the day on different social media platforms to ensure that those not in the room had a clear picture of what was going on and were able to join the conversation.

This planning for the event happened after one of those brainstorming meetings of minds and chance that sometimes occur at diabetes conference. I caught up with Joe Delahunty, Global Head of Communications at Ascensia at ADA because he wanted to speak with me about the launch of their Contour Next One blood glucose meter into the Australian market. And from there, plans for the social media summit were hatched. Joe isn’t afraid to look outside the box when considering ways to work with PWD, and his idea of a blogger event tied in beautifully with the ADC which would already have a number of diabetes advocates in attendance. We both knew that we needed a drawcard speaker. So he sent us Grumps.

One thing was clear from the beginning of the event’s planning – we wanted this event to tackle some issues that aren’t always readily and keenly discussed at diabetes gatherings. It is often a frustration of mine when following along industry-funded advocate events that the topics can seem a little frivolous, and there is the risk that they can seem a little junket-like because most of what is being shared is selfies from the attendees in exotic locations. (For the record, I am always really proud of the Aussie DX events hosted by Abbott because the programs don’t appear as though we’ve been brought together to do nothing more than celebrate our lack of beta cell function while swanning around Australian capital cities.)

The #OzDSMS program was simple – three talks plus a product plug. The discussion was going to be led and directed by the PWD in the room, but the Ascensia team wanted to be part of that discussion, rather than just sitting and listening.

Grumps led the first session in a discussion about how the whole #TalkAboutComplications thing came about after being diagnosed with a foot ulcer. Although he had prepared a talk and slides, the conversation did keep heading off on very convoluted tangents as people shared their experiences and asked a lot of questions.

For the second session, Grumps and I drove a discussion  focused on decision making and choice when it comes to diabetes technologies, with a strong theme running through that while the people in the room may know (and perhaps even use) the latest and greatest in tech, most people using insulin are still using MDI and BG monitoring as their diabetes tech. (For some perspective: in Australia, there are 120,000 people with type 1 diabetes and about 300,000 insulin-requiring people with type 2 diabetes. Only about 23,000 people use insulin pumps as their insulin delivery method. And there would not be anywhere near that number using CGM.)

This certainly is interesting when we consider that most online discussions about diabetes technology are about the latest devices available. We tried to nut out how to make the discussion about the most commonly-used technologies relevant – and prominent too.

Also in this session was a conversation about back up plans. While this is one of Grumps’ pet topics (he wrote about it in one of his #WWGD posts here), I think he met his match in David Burren, our own Bionic Wookiee. Between the two of them, they have back up plans on top of back up plans on top of back up plans, and over the week came to the rescue of a number of us at ADC who clearly are not as paranoid well organised as them.

Yes, there was talk of product. Ascensia’s Contour Next One meter was being launched at ADC, so there were freebies for all and a short presentation about the meter. (For a super detailed review of the new meter and the app that accompanies it, here’s Bionic Wookiee’s take.)

It makes sense that device companies use these sorts of events as an opportunity to spruik product, especially if it’s a new product. I am not naïve enough to ever forget that we’re dealing with the big business of medical tech, shareholders, ROI and a bottom line. But as I have said before, I WANT us to be part of their marketing machine, because the alternative is that we’re not included in the discussion. I’ve not drunk the Kool Aid – I’m fully aware they know that we will have some reach if we write about their product. I’m also fully aware that even though our bias should always be considered, the words remain our own.

I was super pleased that during the small part of the day dedicated to talking about the device, the presentation wasn’t simply about trying to blind us with all the fancy bells and whistles included in the meter. Instead, the focus was on accuracy. As I wrote here, accuracy will always be king to me, because I am dosing a potentially lethal drug based on the numbers this little device shows me. (Well, these days, I need it for when I calibrate my CGM which will then inform Loop to dose that potentially lethal drug.) Accuracy matters. Always and it should be the first thing we are told about when it comes to any diabetes device.

We moved to the Adelaide Oval for dinner for a final presentation by CDE and fellow PWD, Cheryl Steele, who also spoke about accuracy and why it is critical (this went beyond just talking about the new meter). I walked away considering my lax attitude to CGM calibration…not that I’ve necessarily made any changes to that attitude yet.

It was an exhausting day, but a very satisfying one. There was a lot of chatter – both on- and offline and it felt that this was just the start of something. Ascensia has not run an event like this before and hopefully the lively discussions and engagement encourages them to see the merit in bringing together people with diabetes for frank and open dialogue about some not-so-easy topics. While this event was exclusively for adults with type 1 diabetes, I think people with type 2 diabetes, and other stakeholders such as parents of kids with diabetes, would benefit from coming together to share their particular experiences and thoughts in a similar event setting, and potentially some events which bring different groups together to hear others’ perspectives.

As ever, I felt that this event (and others like it) go a long way towards boosting opportunities between PWD and industry, and I am a firm believer that this is where we need to be positioned. Thanks to Ascensia for allowing that to happen; thanks to others from far and wide who joined in the conversation – we were listening. And mostly, thanks to all the advocates in the room for contributing so meaningfully.

Disclosures

I was involved in the planning for the Ascensia Diabetes Care Social Media Summit and attended and spoke at the events Grumps attended. I did not receive any payment from Ascensia for this involvement or for attending the Summit. They did provide lunch and dinner, and gave me a free Contour Next One blood glucose meter. And an almost endless supply of coffee. Ascensia has not asked me to write about any of the work I’ve done with them. But I will, because I like to share and I know there are people who are desperate to know what was going on while Grumps was here!

Grumps was here as a guest of Ascensia Diabetes Care, who brought him to Australia to be the keynote speaker at the Ascensia Australia Diabetes Social Media Summit and to speak at other events about his #TalkAboutComplications initiative.

My travel and accommodation to ADC was funded as part of my role at Diabetes Australia. I would like to thank the ADS and ADEA for providing me with a media pass to attend the Congress. 

Just over half way through the Australasian Diabetes Congress and after a massive few days, I’ve lost my voice, my way and, my ability to form coherent thoughts. Thank goodness for links and stuff.

Grumps Down Under

Before the Austalasian Diabetes Congress (ADC) even kicked off, our skies darkened, a final Winter cold-blast hit the east coast of Australia and The Grumpy Pumper arrived. Oh, and Melbourne lost our World’s Most Liveable City crown the day Grumps arrived in my hometown. I’m not necessarily saying these things are connected, but that’s a lot of coincidences…

Anyway, Grumps and I spent the next few days drinking Melbourne coffee and tackling the issue of language and diabetes, and Grumps spoke about his #TalkAboutComplications work. The ACBRD team has written about his visit last week here.

Coffee. Because: coffee.

Once Melbourne had enough of Grumps, we headed to  Sydney to do more work, including visiting the offices of Life for a Child and catching up with some of the team there.

#OZDSMS

After arriving in Adelaide, it was straight to the conference centre for the first gathering of Aussie diabetes advocates and bloggers for Ascensia Diabetes Care’s Social Media Summit.

Grumps was the special guest and as well as speaking about diabetes complications, he and I led a discussion about decision making in diabetes technology.

You can see what all the chatter was about by checking out the #OzDSMS tag on Twitter, (there was a lot of discussion!), and I’ll be writing more about it in coming days.

Hard at it!

DIYAPS at ADC

The next day, ADC kicked off with a symposium on the Brave New World of Diabetes Technology. Three early Aussie loopers – Cheryl Steele, David Burren and me – took to the stage and you can watch all our talks here:

New DIY Diabetes Technologies Position Statement at ADC

And if you make it all the way to the end (the symposium went for 2 hours all up), you’ll see Diabetes Australia CEO, Greg Johnson, launching Diabetes Australia’s new position statement about Do It Yourself Diabetes Technologies. I am so proud of this world first position statement, something that all diabetes stakeholders from all over the globe have been crying out for. (A reminder to anyone asking ‘Why don’t we have one of those?’: please don’t reinvent the rule. Adapt and use this for your jurisdiction and get it out there to start the conversation.

(Click link to go to position statement)

PWD on stage at ADC

Later in the day, the stage in Riverview 7, I was pleased to stand on a stage crowded with some wonderful diabetes advocates for an ADC first – a symposium on Co-design. More about this another time, but some familiar Aussie advocates shared their work which has really advanced the role of people with diabetes in the development and delivery of diabetes services, activities and resources. I was so pleased to be able to show the new Mytonomy ‘Changing the Conversation’ video as an excellent example of co-design.

Melinda Seed and Frank Sita at the co-design symposium

Sexy new pump hits Australia

And rounding out day one was the official launch of the Tandem t:slim pump which is making its way to our shores next month. This is a sexy, sexy little pump and I know there are going to be a lot of people very excited about it! (The pump is being distributed by AMSL Diabetes in Australia, so keep an eye on their website for more details.)

PWD at ADC

Pleasingly, there has been a presence of people with diabetes at ADC. Probably this is most visible when reading social media updates from the #DAPeoplesVoices. David Burren, Melinda Seed and Frank Sita have been invited by Diabetes Australia to provide updates and commentary of the Congress. They are tweeting machines and have been covering sessions, live-tweeting throughout. But that’s not all! Ashley Ng facilitated a Twitter workshop, encouraging HCPs at the event to get on Twitter and share what they were learning. Kim Henshaw is here from Diabetes Victoria; Tanya Ilkew from Diabetes Australia is also here. Grumps is here. And I’ve been doing what I can in between presenting and meetings.

I crashed last night with my voice gone, and fell asleep wrapped in the memory of a brilliant few days of impactful and meaningful advocacy efforts. There’s so much more to do. But these sorts of events, and opportunities to spend time with other people with diabetes who are certainly on the same wavelength and have the same commitment to bringing in the voice of PWD to all discussions, certainly help to advance our cause.

And one more thing

It looks like it’s that time again, Australia…

Disclosures

I was involved in the planning for the Ascensia Diabetes Care Social Media Summit and attended and spoke at the events Grumps attended. I did not receive any payment from Ascensia for this involvement or for attending the Summit. They did provide lunch and dinner, and gave me a free Contour Next One blood glucose meter. And an almost endless supply of coffee. Ascensia has not asked me to write about any of the work I’ve done with them. But I will, because I like to share and I know there are people who are desperate to know what was going on while Grumps was here!

Grumps was here as a guest of Ascensia Diabetes Care, who brought him to Australia to be the keynote speaker at the Ascensia Australia Diabetes Social Media Summit and to speak at other events about his #TalkAboutComplications initiative.

In yesterday’s MJA, there was an article about diabetes apps, written by two Australian endocrinologists, Dr Rahul Barmanray and Dr Esther Briganti. The article is a commentary of concerns of current apps in a highly unregulated system. (Read it here; or read the MJA Insight article here.)

There are currently over 1,500 diabetes apps available online. At the World Diabetes Congress back in 2015, Ellie Strock from Voluntis reported there were 800. The growth here is substantial and will only continue.

Most diabetes apps (in fact, most medical apps) are in no way regulated. In Australia, only a very small number have been through the TGA approval process. (Also at WDC in 2015, Ellie Strock said that of the 165,000 mHealth apps that were available at that time, only 103, or 0.06%, had FDA approval.)

I think that the writers are right: we need to be better at gathering and providing some decent evidence about the efficacy and safety of these apps (just as with any diabetes management tool). And it was great that they highlighted privacy issues: apps collect a lot of data (personal as well as medical), and some if this is shared with third parties. People with diabetes should be aware  of – and have a right to know – just how our data is being used.

However, I found the article to be sightly alarmist, and somewhat out of touch with aspects of day-to-day diabetes, and what PWD are looking for when it comes to digital solutions.

The realities of diabetes mean that every single day, we are making many, many choices and a lot of those are to do with dosing of insulin. We do this by combining the information we’ve been given by our HCPs, what we have come to learn about our own particular brand of diabetes, what we have learnt from our peers, and the technology we choose to employ to help us deliver that insulin. For me, that technology is a highly sophisticated app that provides me with bolus advice after I tell it how many carbs I’m about to eat. Once it has worked out its calculations (clever Loop!) I either agree and tell it to deliver, or override and put in my own number.

The article states:

‘Although apps increasingly advise on insulin doses, there is minimal published information on safety and efficacy, despite these apps effectively providing drug treatment recommendations without health care professional oversight.’

This sentence made me shake my head in disbelief. ‘Drug treatment without HCP oversight’ is my every day with diabetes. In fact, it’s reality for just about every person I know using insulin. Do HCPs really believe that they, and they alone provide oversight into our insulin doses?

There are a number of things we need to think about here. Firstly, as so often, we need to consider education. Apps should never be considered the ‘set and forget’ way to manage diabetes…but then, neither should any diabetes technology. Actually, neither should one-off diabetes education!

Our day one education when using insulin must start to provide an understanding of how it works, and that education must be refreshed and refreshed and REFRESHED. Even as someone in the ‘hand out all the diabetes technology at diagnosis’ camp, I know it is essential that people with diabetes understand insulin to carb ratios, insulin sensitivity factors and how to calculate our bolus insulin doses.

The thing is – we’re not getting that education a lot of the time. And if we don’t know we need it, we don’t know to ask for it. If we’re turning to apps to help us manage our diabetes, we probably do need some guidance about how to stay safe while using them, especially if PWD are diagnosed today when we expect there to be technology – such as apps – to make things more convenient.

Are the apps any less safe than what people are already doing with the limited education that is on offer for most people? I am astounded at the stories I hear of people diagnosed with diabetes being sent home with a syringe and a bottle of insulin and told to come back in a few days. I hear this repeatedly, so perhaps shouldn’t be too astounded.

We can’t blame the technology for not being accurate or smart enough if we haven’t been given the education to know that! Somewhere in there must be some HCP responsibility to educate PWD on what works and what doesn’t. And part of education these days must be about using technology, safely – with acknowledgment that technology is more than just a blood glucose meter, and does indeed include phone apps.

Apps exist because there is a gap in the market. That gap is that people are looking for ways to help make diabetes a little easier, whether that be prompting us to take our drugs at a certain time of the day, log and analyse our glucose levels, collecting and storing carb and other nutrient values for different foods, or helping us to calculate bolus doses.

We look to technology (including apps) to help us, and to work with and augment what we already know through the education we have received or have learnt from our HCPs – or at least, should have received.

While many of the apps claim that they will help lower A1c, I do wonder if that is the main reason that PWD decide to try a diabetes app. Is it that they are looking for improved diabetes management, or is it really just wanting some help in the constant tasks required to manage diabetes effectively?

As always, I look to my own experience as the only one I truly know and understand, and I can say with great confidence that I have never ever taken on any app with that intent. It’s always been about making things easier and reducing the burden of diabetes. Today, I rely on a highly unregulated app to do a lot of my day to day diabetes management. But because I have been fortunate to have the education I need, I am confident in doing that.

Apps are not evil or dangerous. TECHNOLOGY is not evil or dangerous. The real risks to people with diabetes is not having the right education to make informed, educated, confident decisions and choices about our diabetes; that same education that would help us assess the safety of the apps mentioned in the article.

Look, I am not saying that there shouldn’t be concerns about unregulated apps, or that we shouldn’t be having these conversations. Of course we bloody well should (and should have been for a long time; apps are not new).

But in there with the criticism and concern, there needs to be more acknowledgement of why people are turning to apps. Because otherwise, it looks like just another example of HCPs trying to stifle advancements in diabetes technology.

My highly unregulated app of choice, in a highly unregulated world of apps.

I have always loved shoes. I have a killer collection that ranges from perfectly comfortable and sensible flats, to impractical, not all that sensible – but damn gorgeous – heels. My boot collection is enviable – current faves are the animal print stacked heel ankle boot, and tan coloured knee highs that wouldn’t be out of place in an ABBA revival band. Shoes can be works of art – the elegant black suede pumps with stunning bright coloured embroidered flowers now sit on a bookshelf, too worn to wear anymore, but too beautiful to throw out.

I remember the shoes I was wearing at important times in my life – they mark significant moments, sending memories flooding back to me. My wedding shoes were white satin pumps, comfortable enough to walk in all day long and dance in all night long. They are decorated with beads from my mum’s wedding dress and are still one of the prettiest pairs of shoes I have owned.

I dread being told by the podiatrist on my not-frequent-enough visits that I need to start to think about wearing more sensible shoes all the time. But so far, that’s not happened. She tells me that I can continue to go about wearing what I have, as long as I remember to regularly check my feet and get anything unusual checked out as soon as I notice anything.

I get to keep walking in my shoes, and not worry that the heel could be lower or less stiletto-y, the base slightly wider and orthotic-friendly.

I frequently hear cries for others to ‘walk a mile in our shoes’ as a way for them to get an idea of what living with diabetes is all about. It often happens after a particularly lousy piece of journalism that just gets diabetes wrong, or when yet another comedian makes yet another lousy diabetes joke. These days, it happens a lot when politicians say ridiculous things about why they won’t fund diabetes products, services or programs.

I guess the idea is that if someone walks in our (diabetes) shoes, they’ll know what diabetes is like.

I have no interest in people walking a mile in my shoes (or boots, more likely at the moment in freezing cold and wet Melbourne) because really, how effective is this idea in getting people to truly know what diabetes is like? What will someone learn in that mile, especially with the knowledge that they can take off my diabetes shoes once they’ve walked that mile…something that those of us living with diabetes can’t do.

Just like puppies, diabetes shoes are for life…not just a mile.

It’s for this reason that I have always questioned the value of hypo simulators. (I wrote contributed to a piece for Diabetes Mine a few years ago after first seeing – and sitting in – a hypo simulator at the first EASD I attended, and pointed out how absurd they are in my talk at the HypoRESOLVE kick off meeting earlier this year.) Anyone using the simulator can get out at the end of the demonstration and they’re done. There isn’t the thought of another simulator hanging over their head forever, or doing whatever is possible to avoid them – which is what living with diabetes and the threat of hypoglycaemia is like. Or suddenly becoming immune to actually seeing a hypo simulator until they find themselves in one, like what happens with impaired hypo awareness.

And it’s why I’ve questioning exercises where people are asked to wear diabetes devices for a few days. (Such as the time I was highly critical of a doctor who, in a piece about wearing a pump for a few days, declared she understood the frustrations of living with diabetes.) I remember standing in a room of first year med students explaining diabetes and as part of the talk, they were asked to do a blood glucose check and inject saline into their stomachs to get an idea of what we go through. Some of them refused, so perhaps the value of that session was explaining to them that those of us required to do such tasks don’t have the privilege of choosing not to because we don’t like needles.

My criticism of these sorts of activities is not to make people feel bad. I’m simply attempting to bring some perspective to what they can actually achieve. Suggesting diabetes is about merely wearing devices (or wonky vision when hypo) is reducing it to a condition that can and should be easily managed, and is easy to live with.

I don’t want anyone to walk in my shoes. I can do that for myself. But I’m always happy to have people walking alongside me. There is always room for that. Especially if we’re going shoe shopping!

Official ‘Look! We’re at a conference!’ photo.

One of the best things about going to diabetes conferences is finding time to speak to, and bounce ideas off, fellow people with diabetes. It’s always so great to hear others’ ideas and opinions – sometimes I find myself nodding in furious agreement, and other times their views are completely opposite to how I see things. 

A couple of weeks ago at the America Diabetes Association Annual Scientific Meeting, The Grumpy Pumper and I spoke about a post I was writing (and subsequently published last week) about using the latest diabetes technologies at diagnosis. I knew that he would have some strong thoughts on this topic. 

Grumps said he had some concerns with my ‘give us all the tech right now at diagnosis’ approach, and today, he’s written his thoughts. (Seriously – my pestering him to write is paying dividends these days! Note to self: keep on it!)

Here’s what he has to say…

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I’m not really sure if this is a What Would Grumpy Do (#WWGD) post or not. Or if it’s just rambling of the kind of crap that occupies my tiny brain on a daily basis.

Anyway…

Last week, the Nigella of the DOC posted about the use of diabetes tech and how early someone should be offered it post diagnosis(Renza note: Grumps: We’ll be talking about that nickname next time we catch up…)

This subject always interests me, and, to a point, concerns me.

Don’t get me wrong: I love the idea of everyone having the choice of whatever kit they want and need to manage their diabetes, as early as possible in their journey with diabetes, to be able to relieve their own personal burden of diabetes. This also goes for parents and carers too – (those that manage diabetes in a different way, for or with the person with diabetes, dependent on their age etc.).

Of course, the utopian world is for a fully functioning ‘Artificial Pancreas’ (AP) to be commercially available and affordable; a world where at diagnosis, everyone has access to this and the information to make an informed choice if it’s right for them; a world where for most, if not all, that burden of diabetes is not even realised…

My interest and concern?

Well, my job, (as uninteresting as it sounds to most), is business continuity. Or planning for what happens when (as an organisation) things go wrong: when technology that you rely on is unavailable; when your supply chain lets you down; when there is a skills shortage to carry out the things you need to do.

As a result, my brain (tiny as it is) constantly sees the possible risk of what could go wrong, and the mitigations and plans. (The saddest part? I actually enjoy it…)

You can maybe see where I’m trying to go with this now?

The more we rely on diabetes technology, and the earlier we do so, then we (in my opinion) need to have better contingency plans in case things go wrong.

Our ultimate safety net is hospital. However, none of us want to have that as our contingency, do we?

Continuity planning isn’t complicated: it can be detailed; it’s often dull. Ideally it never has to be implemented, but inevitably it does.

The official definition of business continuity is:

‘…the ability of an organisation to maintain essential functions during, as well as after, a disaster has occurred.’

Basically: the ability to carry out the essential things you need to do when shit goes wrong!

I’ll try and keep this brief since I can see you are already dropping off to sleep.

For me, with my diabetes management, it breaks down to this:

Essential functions (the minimum things I need to achieve):

  • Avoid DKA
  • Stay in a safe glucose range (so wider range than usual target, and sod any talk of flat lines!)
  • Be able to detect and treat hypos
  • Be able to fulfil driving regulations

Tasks I need to do to achieve the above:

  • Get a measured amount of insulin into my body
  • Be able to check my glucose levels
  • Treat a hypo when detected (meter or hypo awareness)

Critical tools needed to achieve the above:

  • Insulin
  • Insulin delivery method
  • Blood glucose monitoring system
  • Hypo treatments

The level of continuity that you wish to plan for is total up to the individual. Ideally, we usually try to plan for minimum disruption.

My current diabetes kit is:

  • Insulin
  • Insulin Pump
  • CGM
  • Blood glucose meter
  • Hypo treatments (various)

Whilst I am lucky enough to have spares for most of this kit, I, in my opinion, benefit from being old school. My journey to diabetes technology has been progressive and having started on injections (via syringe) I am confident that I have the skills to keep myself safe if all my technology failed.

As a result, my base-level back-up is:

  • Insulin
  • Syringe
  • Blood glucose meter (and of course strips)
  • Hypo treatments (or cash to purchase as a back-up to my back-up)

So, there you have my interest…

My concerns?

Skills shortage.

In that utopian world where all go onto AP at diagnosis, how do we ensure that we have the skills to stay safe if technology fails? Or if a suppler fails to be able to get a component to us? Let’s face it, a hurricane in the wrong place can cause production issues that lead to shortage of supply; transport strikes; fuel shortages. All of these, and more, have possible impacts.

So if we don’t have the skills to implement our back-up plan, then what use is it?

Some would argue that PWD would need to be educated on MDI etc., which is very true. However, it is another thing for most adults to know how to inject and actually doing it for the first time.

Then there are children with diabetes. Diagnosed as a baby and on a pump soon after, the child may never know how to inject. Until they need to. That could be a huge psychological thing for any child.

There is no one easy answer. As always, and as I said above, our ultimate safety net is hospital so we should always be safe.

But my advice to myself is:

  • Have a plan
  • Know how to use it
  • Wear sunscreen

Live Long and Bolus!

Grumps

Want more from The Grumpy Pumper? Check out his blog here. And follow him on Twitter here

Our home was built in 1913. It’s a beautiful Edwardian house with a ridiculously high peeked roof and gorgeous ornate features.

I love that although the house still has all its beautiful old world character, it has modern touches that make living in it in the 21st century much easier and far more comfortable than when the house was first built.

I have no interest in living the way the original inhabitants of our home lived. I like knowing that when I walk into the house after work today the hydronic heating will have been programmed to have switched on half an hour earlier to take the chill out of the air. I love that the Aga stove is still nestled into a corner of the kitchen, but the fan forced oven on the other side of the room takes no time to heat up for when I want to bake a batch of brownies. (Or these blondies which I made a couple of weeks ago, and are my new favourite 10 minute bake up!) I love that hanging from the pressed metal ceilings are electric lights that switch on and off as needed.

I am more than happy to give a nod to the old, and admire its loveliness. But I don’t want or need to live that way.

Period features galore.

It’s how I feel about diabetes. I can only imagine what diabetes was like many years before I was diagnosed. But I have no desire to sharpen needles, boil syringes or pee on sticks and analyse the colour that appears after ten minutes to give me a not-especially-accurate idea of how much glucose is floating around in there.

And yet, in most cases, people with diabetes are asked to step back in time with older management options before we earn the right to use newer management techniques. We are told this is done so that we understand the basics. Or have a back-up plan if things go wrong. But surely there is a way we can tick those boxes while still being able to utilise the technologies we choose to use – even the newer ones.

If I were newly diagnosed today, I would want to go straight onto an insulin pump and CGM. Obviously, I would need to learn to do blood glucose checks because CGMs in Australia need calibrating. That should simply be part of the training. And yes, I’d need a back-up plan in case my pump stopped working, but again, providing basic information about how to do an injection and insulin doses could also be part of that training – and repeated at follow up visits.

Why should we have to learn how to use old methods of treatment when there are newer methods that might suit us better?

The other day, my daughter asked me how she would manage diabetes if she was diagnosed. (Her question was the prompt for this post.) After I remembered to breathe again, I suggested that it would be up to her and that I’d support whatever she chose. ‘I’d want to Loop,’ she said. ‘I see how you are and I think that’s what I’d want, too.’

I thought about it and realised that most – all? – people who are newly diagnosed are put on MDI and BG monitoring, and I thought that there is no way that I would want that to be the only option offered to my kid if she were diagnosed. It seems archaic to me.

I would want all the options presented to us, including the ones we’re told we have to earn our stripes for before we are allowed to use them.

Now obviously, I’m coming from this with the perspective of someone who is not new to diabetes. Twenty years of living with diabetes under my belt, a job at a diabetes organisation and a career in diabetes activism and advocacy means that I would be far more in the picture than someone who is completely new to diabetes. I totally get that. But I also know that I think everyone diagnosed with diabetes should have access to the latest and greatest if that’s what would be right for them.

But why can’t that initial training be inclusive of back up plans?

Also, I do wonder if we are setting ourselves up and falsely believing that by having our back-up plans we are all sorted in case of emergency. I have not had a pump break in over seventeen years. I guess I’d be fine doing an injection, but apart from probably half a dozen times where I have injected to bring down a stubborn high, I’ve not had to use a syringe or pen. My back-up plan of long-acting insulin frequently is out of date. How confident would I be if my pump died this afternoon and I needed to go back on MDI for a few days? Not especially confident, I have to say, even though I know how to do an injection. (For the record, I have a spare pump. So MDI is actually the back-up plan for my back-up plan.)

This is just another one of those ‘it’s about choice’ situations. At ADA last week, I attended a CGM update. (Two things to note about this session. Firstly, it is held at 5.30am and I was there at kick off. Secondly, the coffee was shit and I was seriously feeling grumpy. But despite that, I managed to pay attention and hear what the speakers had to say.) Viral Shah MD in his presentation encouraged the use of CGM from diagnosis of type 1 diabetes (with a strong caveat of it must be up to the PWD to make that decision).

And one final point: CGM is not new technology. Neither is pump therapy. These are established, well-researched and safe technologies that have been around for a number of years. So why are they not offered as first line treatments?

On Saturday, I had the pleasure of attending the Australia Diabetes Society’s (ADS) annual Insulin Pump and CGM Workshop. I’d been invited along another ten or so people with diabetes who already wear CGM or Libre to share our insights into living with and wearing sensing devices.

(Quick shout out to the ADS. For those who don’t know, the ADS is the professional body for endos in Australia. Over the last few years, their leadership team has been absolutely instrumental in finding ways to better include PWD in what they are doing. As an organisation, they have been innovative, and responsible for ground-breaking initiatives such as the Enhancing Consulting Skills resource. We need our professional bodies to be like this. And we need them to work with us so that we can provide our perspective to the work they are doing.)

The idea of the workshop is for endocrinologists to have hands on experience of the technology rather than just what they see and are taught at industry events. (For the record, the industry events are super important because they are an opportunity to learn about the shiny technical side of things. And get branded pens. Pens are awesome.)

Discussion was the focus of this session. There was no long presentation with people taking notes. Instead, we were asked to sit at tables with endocrinologists, and encouraged to share our the real life experience of wearing the technology.

Now, I don’t know about you, but this is always the way I want to learn and to share information. I seem to get annoyed at sessions when I have someone speaking at me for ages, telling me what they think I need to know. I much prefer to have discussions and watch conversations go off on tangents, providing attendees with the details and information that is relevant to them; that they will be able to take home with them and put into practise.

The thing about having PWD in the room is that we have a tendency to hold little back. My friend Jodie and I were at the same table. We both wear Dexcom, but our experiences are quite different. (Or as I put it: ‘She does what she’s meant to. I don’t’.) This was actually a master stroke, because it showed the endos just how varied our experiences can be. And that while what works for one person may not necessarily work for another, there really may not be a ‘right’ way to do things.

Jodie and I demonstrated putting in new sensors so that the endos could see how the actual insertion works. We talked about using an alcohol swab where we were about to site our sensor (in this case, I was the one following the instructions I’d been taught when I first started using CGM. ‘ Yeah…I can’t be bothered,’ said Jodie and I wanted to high five her and welcome her to the dark side of non-compliance.)

There was one endo at our table who was pressing every single one of my ‘OH-YES-LET’S-TALK-ABOUT-THAT’ buttons, and the first thing she said when we removed the sensor from the packaging was ‘Why is there so much waste in there?

We spoke about the fact that current Dex sensors don’t have reusable inserting devices and that really, the companies could perhaps do a little more to find ways to reduce waste, while continuing to produce a sterile product. (The G6 apparently has addressed this…)

At one point, the Dexcom rep. mentioned the share function on the G5, and as if by magic, my new favourite endo jumped in with ‘Who makes the decision as to whether or not their data is shared.’ I wanted to hug her, but it was the first time we’d met and I thought that might be a little creepy. But yes; oh yes! We were going to talk about consent.

The absolute best thing for me was that not once as I shared by clearly (and absolutely owned) deliberately non-compliant CGM existence, did one of the endos look at me with disdain, shake their head, raise an eyebrow or tut tut. They asked how what I did made things better for me.

Some examples of questions and my answers:

Why do you wear the sensor on your arm and not your stomach?

I find it more comfortable and it reads more accurately. Plus, it lasts longer there than on my tummy.

Why do you restart the sensor?

Because I’m frugal and don’t want to fork out $90 every seven days when I know it works perfectly well for me still at 21 days 

Look, the Dex reps should turn away right now, block their ears and pretend that they don’t understand me, because I am going to be really candid about this. Firstly, I am going to say that I adore this product. I would say that no matter who is in the room – I’m not sucking up to the AMSL reps because I’m hoping they’ll throw some free product my way. They don’t and that’s fine. I mean it. This is a brilliant product that I literally trust with my life. But there are some things that piss me off…

Sensors are around the $90 mark. They are approved for use for seven days. But at the end of those seven days, the sensor is still working perfectly. In fact, many people report that it works even better after the first week. Why should I throw out a perfectly good, working product if it is still doing what it says on the box? 

I know the risks. I am choosing to do this myself and I am more than happy to own it.

But while we’re on this topic. The transmitter is AUD$540 every three months. That’s right, after three months, it stops working. The batteries are still good to go for a couple of months, but the device is factory set to stop working. Now, this has been done with a whole lot of safety considerations in mind and I understand those. But again, a device that is not rechargeable and still has some use in it has to be thrown out.

So, I don’t really have any qualms about using all sorts of DIY solutions that allow for the transmitter life to be extended.

I’ll say it again – I know the risks. This is about me and no one else. I am happy to take those risks.

So, you don’t calibrate it as recommended. Why?

Because sometimes, stopping whatever I am doing to calibrate is not something I want to do. Plus I’ve been wearing this for over 2 years now and I’ve learnt what to trust and what not to trust and how to use it safely. I have set my own boundaries that I feel are acceptable and perfectly safe.  

Do the alarms bother you?

They used to. But now I’ve managed to customise them to a way that works for me. I have all the alarms on now, but in the past, I had all the high alerts and alarms disabled because they pissed me off so much. But the predictability of Loop means that the alarms are rare and I generally I have the headspace to respond to them as they happen. (Although the please calibrate one can drive me nuts sometimes.) 

Do you share your CGM data?

I have in the past, but I don’t these days. As an adult with diabetes, I make that decision and there have been times when I’ve liked the idea of someone having my back – usually when I’ve been travelling solo. But since I’ve been looping there has been no need.  

What’s Loop?

Um…we’re going to need a longer session… Here’s the address to my blog. Sorry for all the swearing.

After the event, the event organiser sent me a lovely text message, thanking me for my time and for speaking at the Workshop. She said that the CGM session was a highlight for many of the attendees. ‘People with diabetes make the best teachers,’ she added. And she’s right. When we are talking about what it’s like to actually live with these device on our bodies and in our everyday life, we really are the best people to talk about it! HCPs are great at talking about the science and the clinical side of things. But we make diabetes real because we are living it. You can only get that when you go straight to the source. And yes; we’re the source.

Disclosure

The ADS provided me with a $50 gift voucher to thank me for my time on Saturday. I was also given one Dexcom sensor to insert at the Workshop which I am still wearing. (And will do so for the next three weeks or so…)

I’m a little late to the whole Black Mirror thing. Aaron has watched through all four series and has repeatedly told me that I should get onto it, but I’ve just not been in the right mood to start and work through a new sci-fi series. (For anyone equally behind the times, Black Mirror is a Netflix series.)

However, there was one episode in particular that Aaron, and a couple of other people, suggested I watch. It is called Arkangel. The Netflix description for this episode is:

Worried about her daughter’s safety, Marie signs up for a cutting-edge device that will monitor the girl’s whereabouts – and much more.

The device (called Arkangel), an implantable chip, allows Marie to see her three year old daughter, Sara’s, location and vitals – blood pressure, heart rate, cortisol levels etc. – in real time. But more than that, the chip allows Marie to actually see exactly what Sara is seeing – not to watch her child as if there were CCTV cameras everywhere, but to see the world precisely as her daughter is seeing the world. There are parental controls that allow Marie to change what her daughter sees, effectively, blocking out (by pixilating) anything not PG-rated. The device was completely controlled via an iPad-type device and would alert if Sara was in any distress.

Arkangel was sold as a way for parents to know that their children were safe at all times. And what could possibly be wrong with that? It’s what all parents want. Right?

About ten minutes into the episode, I looked over at Aaron. ‘This is making me really uncomfortable,’ I said to him. Watching Marie getting on with her life, with the Arkangel tablet device next to her for easy access to what her daughter is experiencing at that moment, made me feel very uneasy. Every single thing her little daughter saw was replicated on the tablet.

As the episode progressed, Sara got older and Marie continued to monitor her daughter’s every move. But by the time she gets to about ten years old, Sara starts to question her mother’s use of Arkangel. Sara has come to realise that the parental controls mean she had never seen, and therefore could not understand – a lot of things her friends were talking about. Marie decided it was time to put Arkangel away. The tablet was switched off and stored in the attic, and Marie and Sara got on with their lives.

Until Sara hit teenage-hood…!

One night, after discovering Sara lied about her whereabouts, Marie reactivated the Arkangel tablet to locate her daughter, and see what Sara was up to.

My neighbour, Jo, was one of the people who urged me to watch this episode. She knew that I would see what she had seen when she watched the episode. And I did, immediately recognising the parallels between sharing of CGM data and Arkangel. And the issue of consent, or rather, the absence of it.

At the Roche Diabetes MeetUp at ATTD this year, I  joined in a very robust conversation about the whole idea of sharing CGM data. There were adults with diabetes and parents of children with diabetes in the discussion, each with their own idea about the value of the technology.

A number of adults were appalled at the idea of sharing data, claiming it was simply a way for others to spy on them.

Personally, I am very apprehensive about sharing my data. Of course, this is a highly personal way to feel about the technology and there are other adults who absolutely love the idea that there is someone else keeping an eye on what’s going on with their glucose levels, and able to make sure they are okay if there is a problem. It makes them feel safer and more confident – and if that’s what people get from the technology, it’s only a good thing. But I am not sure just how comfortable I am at having someone see every high or low.

But we are adults – fully formed and grown and making decisions about ourselves and our diabetes, forourselves and our diabetes.

I also completely understand that as a tool, CGM sharing is one of, if not THE, most valuable and essential tool for parents to feel confident that their children with diabetes are safe at school, or other places, when they cannot be with their child. I know that CGMs with share capabilities have, in many cases, completely changed family dynamics for the better.

So when I question the technology and what it can do, I’m not in any way searching for answers about the value of the tech – that is indisputable in my mind. But I am questioning the issue of consent.

While it may make perfect sense for an infant in day care, or a primary school-aged child to have data share activated, what happens when the child starts high school. Or begins university? Or moves out of home? At what age does the idea of having the ability to remotely monitor someone’s CGM data become the decision of the person whose data it is?

I don’t think we have had these discussions, or thought through the long-term implications of CGM data sharing. And I worry that we still seem to not be having those conversations.

When the episode of Black Mirror ended, I felt unsettled. I actually noticed that my heart rate was elevated. I was rattled and had trouble sleeping that night, and I couldn’t help but see Arkangel as a cautionary tale.

Where are the conversations about consent? Where is the line in the sand when it comes to who makes the decision about data sharing? Obviously it will be different for every family, but where are the guidelines or conversation starters to equip people to make those decisions? If this is not being discussed at the time that children and adolescents are commencing CGM, why not?

These are not easy conversations to have – and, quite frankly, as an adult with diabetes, one diagnosed as an adult and not the parent of a child with diabetes, I am not sure that I am the right person to be even talking about it. Some might (and undoubtedly will) say that I should pull my head back in because I don’t understand the situation at all, and simply stop talk about it.

But someone does need to. And I think that it needs to start happening right now.

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