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Yesterday morning, Dexcom UK & Ireland did something outrageous. They posted this to Facebook…
Actually, I can’t post a photo of it, because just as I was about to take a screenshot to share, the post was deleted.
So, instead, let me explain: Dexcom UK & Ireland decided to generously make a £2,000 (about AUD$3,685) donation to Spare a Rose, which (if you have been paying even a smidgen of attention to this blog, you’ll know) supports the IDF Life for a Child program. Life for a Child provides insulin and other vital diabetes supplies to children with type 1 diabetes in developing countries .
And because it’s Easter, Dexcom UK & Ireland decided to make things a little fun by suggesting people pose with an Easter egg and share their photo. Each photo would equal £10 towards the overall £2,000 donation
Now, obviously this is outrageous. We know this because after Dexcome UK & Ireland posted their donation idea, there was so much outrage-y outrage, that everyone was outrageously outraged. Because: outrage.
So much fucking outrage.
Within minutes, there were very aggressive comments from people who joined the dots to show that posing for a photo while holding an Easter egg was pretty much the same as giving yourself, or your child, a mighty big cupful of poison.
I know: outrageous!
But it’s okay. Because along with the comments of outrage from the outraged, there were helpful keto recipes, alongside images of perfectly flat CGM traces, claims of perfectly in-range A1cs and promises that anyone who so much as looked at a chocolate Easter egg had just given themselves a big dose of diabetes complications.
Children are dying due to lack of insulin. That is the bottom line. You want to know what these kids’ CGM traces would look like if by some miracle they had CGM? Like someone dying from being in DKA. That is what they would look like.
But instead of contributing to the campaign to keep some of these children alive, a group of LCHF zealots hijacked the post to militantly push their agenda.
This is the very definition of privilege. This is the very definition of missing the point. This is the very definition of being a complete and utter dickhead on social media.
You know, there is a place for outrage on the internet. It’s outrageous when people think they have the right to criticise or attack another person for what they want, or don’t want, to eat.
But if people want to channel their outrage into something productive, how about focusing on the fact that children in some parts of the world are dying because they cannot access insulin. Because, actually, this really and truly is outrageous.
Postscript
Dexcom UK & Ireland has a new campaign:
Please click on the image above to be taken to the post to share how you will be celebrating Easter (which may or may not involve chocolate eggs!). Your photo will contribute to the donation Dexcom UK & Ireland makes to Spare a Rose.
You may also like to make a donation yourself by clicking here.
More on online outrage:
Any time there is something even remotely new in diabetes – from a new-fangled device, new education program, new research study, new funding model – it is referred to as a ‘game changer’. The so-called game of diabetes has transformed so many bloody times that just as you think you are on top of the latest and greatest, sure enough it all gets changed up again once someone releases a new app or data management system.
I kind of wish we would stop using the term ‘game changer’ because diabetes isn’t a game. At least, it’s not one that I particularly want to play. Games are meant to be fun and entertaining. Diabetes is not fun. And it is certainly not entertaining.
Also, what is referred to as a game changer is rarely anything that makes any real impact. In fact, in most cases, it’s just a matter of moving pieces around a board without anyone actually advancing towards the finish line. Are these alleged game changers really just a matter of doing the same things in a slightly different, perhaps more technologically-advanced, way?
CGM or Flash glucose monitoring aren’t game changers – they’re just different ways of monitoring glucose, in the same way that home blood glucose monitors were just a different way of monitoring glucose. The aim is the same: monitor glucose levels.
Insulin pumps aren’t game changers – they’re just a different way of delivering insulin, in the same way that pens and disposable syringes were. The aim is the same: deliver insulin into body.
New education programs aren’t game changers – they’re just different ways of delivering the same information in a slightly different way. The aim is the same: provide education to people with diabetes, often education that is not necessarily what people want, or in a way they want it.
And the result of all these so-called game changers also seems the same. Not necessarily optimal results most of the time. Do not pass go; do not collect $200.
We’re moving around the pieces and changing the rules, but what has really and truly changed? Is it that we have better outcomes? Perhaps it’s that there are more ladders than snakes on the board now?
I’m guilty of using the term. I have referred to Loop as a game changer because although the aims are the same, the result has been to somewhat lessen my diabetes burden and that shouldn’t be minimised.
But I still have diabetes. I still have to do a lot to manage it. The way I manage it may be simplified now, but a lot of it is still the same.
Games are meant to end. There is a winner and a loser, and I really don’t like to look at diabetes in those terms.
Surely the only true game changer in diabetes is going to be when there is a cure. But until then, it’s the same board, just with ever changing pieces, ever changing design, and ever, ever, ever changing rules.
Look at this! Googling ‘Diabetes Games’ I came across this from Jamie Naessens on her blog ‘Flying Furballs’. I love that rather than there being a ‘jail’ square, you get a free cupcake instead! Click on image to be taken to the original source.
In the talk I gave the other day at a diabetes educator conference, I shared my most recent A1c result with the audience. I did this after very careful consideration, because I generally don’t share that information.
But I decided that the context and situation was right – the room was full of HCPs who still often use A1c as the way to measure the success of a diabetes treatment or technology. Plus, I knew that there may be a lot of concern about the off-off-off label technology I was using. Surely a way to win over the crowd and point to the value of Loop was to play to my audience and give the crowd what they want.
When I announced my A1c to the room, the audience clapped. That’s right; they broke into spontaneous applause. I responded by asking them to stop – to please not applaud an in-range number.
I felt extraordinarily uncomfortable hearing the applause, because I couldn’t help but feel that if instead I’d declared an A1c out of range, the response would have been the sound of sharp intakes of breath. I know this, because I have spoken about high numbers before, and that is the noise a roomful of HCPs make when I talk about double-digit A1cs.
This week, I’ve been thinking a lot about how the impact of what we are told about many different aspects of diabetes – and the way things are framed – can be long lasting. And as my head is increasingly in the communication around diabetes complication space, I keep coming back to the need to reframe the way we present diabetes.
My newly-diagnosed self wouldn’t have batted an eye lid if I heard of HCPs applauding at an in-range A1c, because that was what I was told was a measure of success, and we applaud success, right? Just as that newly diagnosed me truly believed that someone being accused of failing to care for themselves because they had developed diabetes complications was a fair call.
These were the beliefs that were anchored in my mind as the absolutes of diabetes. But all they managed to do was anchor me to feeling as though I was constantly failing.
It took a long time to overcome those biases that seem to be the lifeblood of the diabetes narrative. I wish it happened sooner. I wish I hadn’t been anchored down for so long. Now I understand that we can acknowledge effort, but not applaud a number. How liberating this is; how much lighter I feel!
More musings on A1c
The saying goes ‘don’t sweat the small stuff’ and it has, to a degree, become a mantra of mine. There are a lot of things just not worth getting all worked up about, because life is too short, And there are too many coffees to drink, books to read, movies to see, boots to wear, places to visit.
So, I’ve become quite good at managing the annoying small stuff with a well-placed eye roll.
But the good small stuff? That I’m all about celebrating.
Things that I am all about doing a happy dance for include:
- Those diabetes-nirvana moments of a 5.5mmol/l readings on my Dex.
- The days that my cartridge running out perfectly aligns with needing to do a line change.
- Even better – the days that a new sensor day matches line change day and I get to have a perfectly-naked-no-devices-or-tape-stuck-to-my-body shower.
Perfect timing – frangipane tart out of the oven just as I’m sitting below target.
- Realising the pyjama shorts I impulse bought have pockets.
- Thinking I have run out of blood glucose strips, only to open my diabetes cupboard and see that there is another unopened box waiting for me.
- Seeing how between my bolusing into Loop, and Loop’s magic automation has worked perfectly – so perfectly – even though I just ate a notoriously difficult to manage meal of Pad Thai, and I am smack-bang at my target two hours after eating.
- Arriving home at the exact moment that my pump tells me its cartridge is empty, having been playing ‘insulin roulette’ all day.
- Knowing I’m onto my last bottle of insulin, don’t have a current prescription, BUT seeing my endo that day and have already called in the insulin order from my pharmacy, so it’s ready for me to collect on my way home from my appointment.
- Finding a bra that fits me perfectly comfortably, and securely houses my pump and RileyLink. (So I buy it in every single colour!)
- Baking the most perfect grape frangipane tart and pulling it out of the oven, ready to serve warm at the exact moment that I know I need a few carbs to keep things right in the range I want them.
I might not get diabetes right all the time; in fact, I may actually be not good at diabetes far more often than I care to admit. But when things work out, and the diabetes planets all line up, there is fist pumping and high fiving all around. I celebrate the small victories because when you add them up, they equal a whole lot.
Step right this way for some diabetes snapshots, information, and inspiration.
URGENT REQUEST TO PEOPLE IN AUSTRALIA FROM INSULIN FOR LIFE
Insulin for Life Australia is in urgent need of Lantus insulin. If you have any no longer needed Lantus (or any other insulin, but Lantus is the priority right now), please consider sending it to Insulin for Life, Australia. More information available here. (If you are not in Australia, please use the same link and request information about where you may be able to send your donated insulin.)
Women’s work
International Women’s Day may have been a couple of weeks ago, but I loved this piece from the Diabetes Mine team paying tribute to women in diabetes.
Researching DIYPS
While we’re talking women in diabetes, this wonderful profile of Dana Lewis showcases not only her trailblazing work in DIYPS, but also how she has moved into researching the technology.
Diabetes devices overview
KQED Science ran this great overview of diabetes devices, including a well-balanced summary of current sensor-based glucose monitors. The piece features another legendary woman in diabetes, Melissa Lee.
Diabetes UK Conference wrap up
Last week, Diabetes UK held their diabetes professional conference in London. They extended the conference by as day to host the Diabetes UK Insider event for people with diabetes which provided a summary of some of the sessions from earlier in the week. (You can catch up on twitter by checking out #DUKPC and #DUKPCInsider tags.)
There was some stellar tweeting from both events from a few twitter stars and the blog posts are trickling through now.
You can read this one from Ros at Type 1 Adventures.
And Ascensia smartly engaged Grumpy Pumper once again to write updates for them, and you can find them here.
Four years
Kim Hislop is a pretty cool woman and recently she wrote a beautiful piece about the last sixth months, which she says have been some of the most difficult times of her life. Four years ago, Kim received a kidney transplant from her mother-in-law and, unfortunately, in September last year, the transplanted kidney was rejected.
Read Kim’s story, including how she is feeling about starting dialysis and what she hopes for her future. She is a truly wonderful person and has been such a wonderful advocate for sharing stories about living with diabetes complications. I really hope she keeps writing.
Please, if you are not already an organ donor, please consider becoming one. Information about becoming an organ and tissue donor in Australia is available here.
Pre-pregnancy planning study
Are you a woman with either type 1 or 2 diabetes aged between 18 and 40 years of age living in Australia? Then Helen Edwards wants to hear from you!
As part of her PhD research, Helen is developing a tool to determine how prepared women with diabetes are for pregnancy. The idea is for the tool to be used by diabetes HCPs working with women with diabetes contemplating pregnancy.
If you are interested in participating, please get in touch with Helen at helen.edwards@adelaide.edu.au.
Just Talking
Last month, I sat down with Christopher Snider and had a chat for his Just Talking podcast. By ‘sit down’, I mean that I was at home in Australia and it was the weekend and I was drinking coffee because it was crazy early, and he was at home in the US and it was … well, who knows when it was – I’m not got at time zones.
We chatted about weird accents (I think we were referring to mine), the Hemsworths and Nicole Kidman, #LanguageMatters (because it does) and other diabetes stuff too.
#GBDOC
I’ve been given the keys to the GBDOC tweetchat bus for this week. I’m talking about including people with diabetes in … well … everything to do with diabetes. I suspect the #NothingAboutUsWithoutUs hashtag might get a bit of a run alongside the #GBDOC tag. Please join me at (UK time) Wednesday at 9pm (which is Thursday at 8am AEDT, because we are the future).
Aims for the chat: don’t use too much Australian slang; limit swearing. I should be right about not using slang…
Spare a Rose wrap up
In case you missed it, the final tally for this year’s Spare a Rose, Save a Child campaign is in!
Thanks to everyone who donated and shared information about the campaign.
I wrote a piece last week about how nervous I was about a talk I was giving at the Victorian ADEA Branch Conference about my personal Loop experience. The conference was held on Saturday, and I did my talk and escaped unscathed. It’s a good news story!
Thanks to everyone who encouraged and sent me words of support before my talk. I decided that I’d come clean before starting and admit to the audience that I was feeling a little nervous because I understood just how contentious many may consider what I was about to say.
Having legendary CDE Cheryl Steele share the stage with me – and her story with the audience – certainly helped!
Here are my and Cheryl’s talks.
A reminder – I am not recommending using Loop. This is my personal story and my personal experience. If you would like more information, please search ‘Loop’ on the blog. (There’s lots here because I keep banging on and won’t shut up about it!)
I am frequently the only non-health professional in meetings or on panels at conferences. I admit to it having taking me a number of years to completely feel that I belonged at the table. Imposter syndrome is real and despite my seeming (over) confidence, I often have to give myself a little pep talk reminding me that the PWD voice is the most important voice, that I have every right to be there, and that I should speak up.
At a recent meeting, I was speaking with a group of healthcare professionals about diabetes complications screening. There was a break in the formal part of the day, and as we stood around drinking our coffees, the first comment came that made me prickle. ‘Screening is available. People just need to stay in top of it.’
I took a deep breath. ‘Um, it’s not really as simple as that.’ I said. ‘You have made an assumption there that people know what the screenings are and how frequently they are recommended. That’s not really always the case. And there are a lot of factors as to why someone may not be up-to-date with their screenings.’
‘Such as?’ asked the person who made the original comment.
‘Really?’ I asked. ‘You need to ask that? There are so many.’ The group was looking at me, waiting for a response that, personally, I thought was a little redundant.
I took a deep breath. ‘Well, to start with, not everyone is in regular care and if they are not seeing someone regularly for their diabetes, they may not be up to date with screening. Also, a lot of people are terrified of diabetes-related complications and that may make them nervous about having the check done. If they don’t feel that they can approach the topic of how anxious they are feeling perhaps they decide that it is easier to simply not know. ‘
I was getting a lot of blank looks, so I did what I do in situations like that. I kept talking.
‘Also, there is a lot more to complications than… just complications… By that I mean that the way complications are communicated is fraught. Often there is a lot of judgement and stigma. People feel ashamed. They think it is their fault if they develop them because that’s the way it’s been framed to them. And of course we all know that’s not true.
The look I got from the others suggested that no, we don’t all know that to be true. So I kept going.
‘Plus…life gets in the way sometimes. Everyone falls behind with the things we perhaps know that we are meant to do regularly. Which reminds me,’ I continued in a moment of realisation, oversharing and far too much information for a group of people I don’t know. ‘I need a pap smear.’
I was about to say something else and then stopped myself, deciding I’d said enough.
‘But surely people need to know. So they can be treated. You all know that early diagnosis means better treatment, right? So why don’t you just stay on top of things. Isn’t that your responsibility to do that. If you find out you have retinopathy or something and you’ve missed five years of eye tests, you can really only blame yourself. A lot of people just don’t care or want to know. You do know that diabetes complications are serious, don’t you?’
I looked at the person who had just said that. Was he actually diabetesplaining diabetes complications to me? Was he diabetesplaining how people with diabetes feel about complications to me? Did he just diabetesplain what people with diabetes know?
I wasn’t sure where to begin. But tried to anyway.
‘Well, no. Not everyone necessarily knows that early diagnosis means better treatment and not everyone knows how frequently screening checks should happen. There is always so much to keep on top of when it comes to living with diabetes that sometimes things slip through to the keeper.
‘And sure, it’s may be my responsibility to keep on top of things, but I have a lot of other responsibilities. I mean, it’s your responsibility to do 30 minutes of exercise every day and eat five serves of veggies. Do you manage that every single day?
‘And blame is a really, really unhelpful word here. It suggests that someone wants to develop retinopathy and so they have wilfully ignored their eye checks. No one wants to develop diabetes complications. I can promise you that.’
‘And to your last point: Yes. I know diabetes complications are serious. How much do I know this? It keeps me awake at night. I actually feel terror about developing them because I am scared that I won’t know how to cope. Before an eye screening and while waiting for my ophthalmologist to tell me what he sees at the back of my eyes, I hold my breath until I hear him tell me that there is no retinopathy. When I have my kidney function checked, I am on tenterhooks until I hear from my endocrinologist with the results…
‘Really – there is nothing you can say that will increase my awareness of how serious diabetes complications are. I know it. I live it. I breathe it. Every single day. That’s what people with diabetes do.’
Thankfully, we were being called back into our meeting and the conversation came to a slightly awkward conclusion.
Maybe, because of all the work I’ve been doing around diabetes complications recently, I’m on high alert, but it seems that I have had more than my usual share of similar conversations recently. And each time I am left with a sour taste in my mouth. I also feel disappointed, sad, tired and a little defeated that there are still so many misconceptions bandied about, continuing and feeding the stigma associated with diabetes complications.
But every single one of these encounters strengthens my resolve to reframe the way we talk about diabetes complications. We need to bring discussions into the open. We need people who have been diagnosed to be given an opportunity to talk about their experiences, so that their stories are heard loud and clear. We need to call out anyone who perpetuates stigma, judgement and blame around complications.
Diabetes complications are a reality for people living with diabetes – either because we are living with them or we are constantly thinking about them. We don’t need HCPs to tell us how to feel about them. We need HCPs to provide information and support us.
*this is the most redundant blog post title ever.
Yesterday, I was invited to speak with the Roche Diabetes Care team at their annual meeting so they could hear from a real-life-walking-talking-person-with-diabetes.
The idea of the talk was about how I try to make diabetes – the most complex health condition in the world – simple. Which, as I pointed out at the very beginning, is laughable, because diabetes and simple are words that should never be in the same sentence.
I started by saying that the idea that diabetes is a simple mathematics equation with the factors energy in, energy out, insulin and current glucose level is wishful thinking. There is a lot more than those four factors affecting glucose levels. And thanks to diaTribe, I was able to show them a list of 42 of them!
And I explained that the 121 diabetes decisions I make every day are all my own responsibility, because, you know, we only get about 4 hours of time with our HCP team.
I’m sure there was nothing new in there for them. At least, I hoped that was the case.
‘To manage diabetes, I have had to wear many hats,’ I said, and then listed all the things I have had to become just to try to deal with diabetes. These included:
- A one-person multidisciplinary healthcare team – because my team are not – and should not – be on call to be 24/7.
- A mathematician – because I do use algebra every.single.day. And do fancy pants calculations.
- A detective – because somehow I have to sleuth my way through health advice from Khloe Kardashian and Dr Oz.
- A scheduler – because of the regular ‘check-up’ appointments, complications screenings, blood work and anything else that needs doing.
- Fluent in a new language – the language of diabetese.
- A technology geek – because of all the devices I have stuck to my body and reading to my phone need to be driven by someone. And that someone is me.
- An advocate – for myself firstly, and then became one for others too.
- An engineer – because I did, after all, build my own artificial pancreas (lots of disclaimers after that saying that really all I had to do was follow step-by-step instructions much the same as one does when putting together Ikea furniture with an Allen key).
- Thick skinned – to deal with everyone who wants to tell me what I should be doing better to better manage my diabetes.
- A data analyst – because there is fucking data everywhere.
- A negotiator – mostly negotiating with myself to try to do better.
- A word nerd – because #LanguageMatters (Also, I am incapable of giving a talk and not talking about language it seems…)
- A comic – because finding the funny side of diabetes is sometimes necessary o get through the day.
- A social media whore – because I have found my tribe, love them hard and because so many of them live on the other side of the world, we hang out in the cafes of Facebook and Twitter lands.
The thing about diabetes is that apart from being the very opposite of simple, the thing that all of us living with the condition know is that even those things that are meant to help streamline our management, often add to the complexity.
It was at this point, I spoke about technology. ‘I love technology. I love diabetes technology. I want to be the first person using things. I will jump on a diabetes tech bandwagon as quickly as I can,’ I said. ‘But the thing about technology, is that while it may make some things easier, it can also create more work.’
I spoke about the work insulin pumps can be – the need for very regular glucose checks, the needing to make sure there is enough insulin to last the day, changing sites and checking them for infection, feeling frustrated when there is a technology glitch. And of course CGM – as wonderful as it is – can be frustrating, beeping, alarming and causing nothing but angst.
The tech is great when it works, when it is doing what we need it to do and when we feel that we are able to operate it as best we can. That’s certainly not always the case. And it’s important for people to understand – especially the people who make the technology and are speaking about it – to know that.
That was the take home message from my talk. Well, that and a reminder that even with the myriad hats that I wear to try to manage my diabetes, the hat that is by far the most important is the one that I wear when I am with the people I love, doing the things I love….and that is never, ever diabetes.
Roche Diabetes Care invited me to speak at the meeting. They covered my flights and transport costs.
Today I’m in Sydney giving a talk to the team at Roche about how I try (and generally fail) to simplify the most complex health condition in the world.
Alas, as I finished prepping my slide deck, I realised I have no real solutions and actually, diabetes remains bloody complex.
As you were…
When I first spoke to my endo about Loop, I wasn’t really all that concerned or nervous. The decision to take my diabetes management in a new direction was mine and mine alone and I knew she would support and work with me. My approach was pretty much the same as when I have changed any aspect of my management, whether it be introducing new tech, a new eating plan or anything else that deviates from the norm.
And after my first post-loop appointment, when she listened to what I was doing and how it was going, her response was brilliant. I guess that after she heard how great I was feeling and how well I was going since looping she realised that this was the best thing for me to do at the moment and she wanted to know how to continue to support me.
But I know that is not the case for everyone and that is especially evident at the moment with more and more people using DIY diabetes technology solutions.
I frequently see discussions online from people who are very apprehensive about an upcoming appointment when they will be telling their HCP that they are Looping. And I have heard stories of HCPs refusing to continue to see people with diabetes who have started using the technology.
This actually isn’t about Loop. At the moment, a lot of the discussion may be about DIY technologies, but actually, this goes far beyond that.
It’s the same as for people who have adopted a LCHF approach to eating and have been told by their HCPs that it is not healthy and they would be better off returning to an evidence-based eating plan.
It is the same as when pumps were new and CGM was new and Libre was new, and HCPs were wary to recommend or encourage their use due to the lack of evidence supporting the technologies.
I am keeping all this in mind as I prepare for a talk I’m giving this weekend for the Victorian branch of the Australian Diabetes Educators Association. I guess I am a little battle-scarred after my talk at ADATS last year, and am being far less cavalier about charging in and extolling the brilliance of Loop. I know that the audience is new to this technology, know little about it, and might be uncomfortable with the idea that I ‘built my own pancreas’. For some, it will be the first time they have ever seen or heard of it.
I’m trying to think of a way to talk about it so that the audience responds positively to the technology rather than the way many responded at ADATS last year.
But I am a little stuck. Because if I stand up there and say that since looping I feel so, so well, have more energy than in forever, am sleeping better than I have in 20 years, feel less anxious about my diabetes and feel safer, don’t have hypos anymore, feel the least diabetes burden ever, and have an A1c that is beautifully in range… and people still question my decision to use the technology, I’m not sure what else I have. I don’t know what more I can say to try to convince the audience just how much this has benefitted me.
The ending I’m looking for in my talk is for the audience to leave feeling interested in the technology and open to the idea of Loop as a possible tool for some of the people with diabetes they see.
But perhaps more than that, it is wanting the HCPs to think about the way they react when someone walks into their rooms, wanting to talk about something different or something new. It’s about being open to new ideas, accepting that the best thing for the PWD is not what the guidelines say, and realising that there is a lot going on out there that is driven by the end user. And perhaps it’s time to really start listening.
Diabetogenic 