Diabetogenic

Revisited: Welcome or not?

August 7, 2018 in Diabetes, DOC | 2 comments

Communities ebb and flow. For some people, there may be times that the community feels more welcoming and supportive than at other times. Sometimes we need our community more, sometimes we need it less. And sometimes…sometimes we step away because we realise that the community – or at least the way we have been using it…is no longer what we need at that moment, and we reevaluate how we intend to engage (or not).

But these discussions are not new. It seems they happen in fits and spurts. A couple of years ago, it seemed to be one of those bursts of activity, and at that time I wrote this…

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I’ve been interested to read a few things lately on Twitter about the DOC not being a particularly welcoming environment. I am both saddened and surprised to hear that some feel that way, because I have always found the community to be very, very supportive and welcoming. Perhaps I am fortunate, or perhaps I have just found – and engage with – people who are friendly and happy to embrace new people in the community.

I’m unsure if feeling unwelcome is because there is a sense that the community may be a little like a high school clique. There are people who have known each other many years in this space, so they have a comfortable and easy banter as they share stories and inside jokes. I know that when I started, I was worried about that, but anytime I tried to engage, I found nothing other than friendly responses.

When I first walked into the DOC playground a few years ago now, I was considering starting a blog after years of reading what others were saying about their lives with diabetes. I’d lurked around a few online platforms to see how people interacted and what people said.

Then, one day, I decided I would join a tweet chat, and I tentatively said ‘hello’ to the #DSMA world. The rest is history and now I am a regular contributor and participant – both online and off – in the community.

But it did take me a while to understand the lay of the land and to get a handle on online communication. Trying to adequately put across a point in 140 characters or fewer leaves little room for qualifying comments, so often it’s only the bare bones that can be offered. This can sometimes leave people feeling a little taken aback at the directness of discussions.

I am, by nature, very direct. I take the ‘tell-me-what-I-need-to-know-and-leave-it-at-that’ approach, so Twitter is a perfect platform for me. Say what I want and get out! But I know that sometimes, I come across as being very direct; some may even say confrontational. People who meet me after having only engaged on Twitter say they are surprised that I am a lot warmer in real life that online. (I never know whether to apologise or say thanks to that…)

I had to learn that just because people had differing opinions didn’t mean that they were attacking me, or that I wasn’t welcome in the discussion. In fact, some of the people I respect most in this community are people who I don’t usually agree with. They challenge me to think about things differently and to step out of my comfort zone. I’ve engaged in some really robust and heated discussions about different aspects of diabetes. As long as it is done with respect, (and an understanding that an opposing opinion isn’t a character flaw!), I’m happy to not agree.

And, possibly most importantly, I learnt that I didn’t need to love everyone in the community. I’ve written about that before, and how it came as a huge relief when I realised that I wasn’t going to be friends with everyone; there would be some people I just didn’t really feel any connection to – just as there are many who don’t gel with me.

The DOC is a big community; there are many of us. And when there is a community, there will always be people who are more vocal and more active. But they are not the only people in the community. It really does come down to finding people where there is some sort of synergy, or some way to connect. Just like in real life!

So what’s the take away from this? I hate for people to feel that they can’t be part of the community because they have a different view to others. I have not come across another person in the DOC who I agree with all the time. But equally, I’ve not ever had someone attack me for having a different opinion to them. (Trolls excluded in that last comment, because trolling is attacking and just not necessary.)

I guess the struggle is that when you have a lot of very passionate people given a microphone and a stage, we get very, very worked up at times and defend our position fervently, challenging those who don’t agree, building alliances with those who do. We can be a vocal bunch, we like to be heard and listened to, and we want to defend, defend, defend what we say. I am guilty – if that is the right word – of being and doing all these things.

But I genuinely do want to hear from everyone. I don’t have to agree, or even like, what you are saying, but I want to hear it. Any community is stronger with diversity of opinion, experience and outlook. And the community is weaker when people do not feel that they are free to share their thoughts.

Internet Jumble #30

August 6, 2018 in Awareness, Communication, Diabetes, DOC, Health, Hypo, Language, Peer support | 2 comments

I have a very scientific way of collecting info to share in these Internet Jumbles. I make weird notes on my phone that absolutely make sense when I note them down, and then make absolutely no sense when I revisit them to put together the latest edition. (Case in point: ‘DMK mine’ had me stumped for a few hours until I realised that was shorthand for the HypoRESOLVE piece on Diabetes Mine. The DMK is because the meeting was in Copenhagen. Of course it makes sense. Perfect sense.)

Half the time, even after trying to work it out, I still can’t understand my notes, so there is a shedload of stuff I wanted to share that is still a mystery trapped in my iPhone.

But! Here are the ones I was able to decipher. Buckle up…it’s a long one.

Ask patients? That’s novel

Results of a review of international literature examining patient involvement in the design of healthcare services showed that patient engagement can inform education (peer and HCP) and policies and improve delivery and governance.

I am always interested to read these sorts of articles, but must say, my response is often an eye roll and the words ‘No shit, Sherlock’ muttered under my breath.

More here.

Research and people with health conditions

What is the role of people with health conditions when it comes to research? This editorial from BMJ suggests that full partnership is the best way.

And this infographic from Public Health Research and Practice about how to involve consumers in health research is also useful.

Thanks for listening

It’s so nice when people actually take home some tips and tricks from presentations I’ve been involved in. This tweet over the weekend from diabetes educator Belinda Moore (referring to a symposium at last year’s ADS ADEA meeting in Perth in which I was fortunate enough to be involved) was gratifying.

Peer support remains an absolute cornerstone of how I manage my diabetes as effectively as I possibly can. It is those others walking the same road who help me make sense of a health condition which takes delight in confusing the hell out of me!

The driver’s seat

This post from Melinda Seed underlines why she believes that the idea of diabetes being a ‘team sport’ is not especially accurate.

More here.

Complications and language

The awesome PLAID Journal (which you really should bookmark and read) published a piece just as ADA kicked off about why we need to change the way we speak about diabetes complications.

The piece was written by me and Chris Aldred (AKA The Grumpy Pumper), bringing together Grumps’ #TalkAboutComplications initiative and my constant banging on about language. (I first wrote about needing to reframe the way we talk about complications five years ago in this piece. Every word still holds true.)

You can reads the PLAID Journal piece here. And please share. This is a message that we need to get out.

Wellness is not the same as medicine

My huge crush on OB/GYN Dr Jen Gunter only increased after she published this piece in the NY Times last week.

I have written before about how damaging the ‘wellness industry’ can be in diabetes, including this piece on the language of wellness.

Diabetes Voice reboot

The IDF’s magazine has had a reboot and is not delivered in a digital format. Check it out here.

Well, that’s candid…

This photo of Cherise and me snapped at Diabetes Mine’s DData Exchange is hilarious in itself, but Amy Tenderich’s caption is gold!

(Click for source)

Right device, right person, right time

Dr Kath Barnard’s piece in Diabetes Medicine Matters reiterates her message from the 2017 ATTD meeting (I wrote about it here) about the importance of matching the right device at the right time for the right person.

More here.

What are the barriers to preconception care ?

This piece was just published in Diabetes Research and Clinical Practice looking at the reason women with diabetes may or may not attend pre-pregnancy care. (I was a co-author on this piece.)

‘If only there was a….online community for people with diabetes’

That comment came from a HCP at a diabetes conference a few years ago – just after someone (maybe me? I can’t remember…?) had literally just given a talk about the diabetes online community.

The DOC is not new – it’s been around for some time – and this great piece from Kerri Sparling gives a history of the DOC.

HypoRESOLVE on Diabetes mine

I was interviewed by Dan Fleshler from Diabetes Mine about HypoRESOLVE. You can read his piece here – it gives a great overview of the project.

On a break

I’m going to be taking a little Diabetogenic break for the next couple of weeks. The rest of the year is shaping up to be super busy, so I thought I’d use the next fortnight to get myself organised.

I’ll be sharing some old posts from the Diabetogenic archives and expect to be back just in time for the Australasian Diabetes Congress which kicks off in Adelaide on 22 August.

In the meantime, be well and be kind to yourself.

Looking into my own eyes

August 2, 2018 in Complications, Diabetes, Eyes, Peer support, Real life | 2 comments

I was in Sydney last Friday for a day of meetings, and once they were done, I met up with a new diabetes friend, Amira, who I met only a couple of months ago, but had instantly connected with in that way that only those dealing with messed up beta cells do.

I met her at work and then we walked to have a coffee and a chat. After a while, our conversation turned to her work as an optometrist. Amira told me about the camera she uses to do retinal scans.

I mentioned that I’ve never had a retinal scan as part of my eye checks. My ophthalmologist always dilates my pupils and spends a good amount of time looking at the back of my eyes for any changes. This is how my eye care has been managed and I have always been happy with it (and by ‘happy’, I mean: ‘it makes me cry just thinking about it, but I do it anyway’).

‘Would you like me to take a photo of your eyes?’ Amira asked me. ‘You can send the images to your ophthalmologist to keep on file.’

I thought about it for a moment and took a deep breath before answering. ‘Sure,’ I said. ‘Let’s do that! Thank you!’

We walked back to her office and Amira explained how the camera worked and how I needed to position my eyes. After scanning both my eyes, she sat with me and explained exactly what she could see. She pointed out each part of the eye and what she was looking for and patiently answered my questions. She showed me how she could see the artificial lens that had replaced my own when I had my cataracts removed. (And she clarified that the black spot that I was the first thing I saw was actually a mark on the camera – not my eye.)

She told me exactly the same thing I’d heard back in May when I most recently saw my ophthalmologist: ‘Looks great. There’s nothing to be concerned about.’

I wish that THIS was the first time I had ever seen the back of an eye of someone with diabetes, instead of the frightening image shown to me less than eight hours after being diagnosed, when my first endo showed me a photo of an eye with – apparently – diabetes-related retinopathy. I say ‘apparently’ because I had no idea what I was looking at and had no idea what anything meant.

But that image, accompanied by the words ‘This is what happens with high blood sugars,’ has resulted in years and years of seeing an out of range number on my glucose meter and automatically imagining my retina decomposing…behind my very eyes.

This, combined with other scary images used as part of diabetes awareness campaigns, not to mention the occasional poster in the waiting rooms of various HCPs, is why I am so terrified about anything to do with eye care.

And when we also add the blame and shame that inevitably accompanies discussions about complications, using language that disempowers, it is no wonder that my response to Amira asking if I wanted a photo of my eye was to automatically panic.

Despite twenty years of regular checks, with positive outcomes and a supportive ophthalmologist, the legacy of that initial encounter and subsequent frightening images have taken their toll.

Amira emailed me the images of my eyes, and I’ve spent a long time looking at them – because I know what I am seeing (plus, my eyelashes look awesome!). This is information. It is a snapshot in time and, thanks to Amira’s explanations, I understand what is going on .

‘Come and have another scan next year,’ Amira said. I might just do that. While it will be great to have annual images as a comparison, the best part will be I get to spend time with my awesome new diabetes friend!

Amira has provided me with this explanation of the camera she uses and what it does:

‘Ultra Wide Daytona Plus provides contrast and both red-free and green-free filtering, as well as autofluorescence modalities (so we can see layers in front and behind the retina and assess which part is affected).

Photo documentation means we can monitor and track overtime, allowing for early detection. 200 degree retinal scan compared to a standard scan that often gives around 45 degree view.’

App realities

July 31, 2018 in Devices, Diabetes, technology | 2 comments

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.

Shush now

July 30, 2018 in Communication, Diabetes, Family, Healthcare team, Real life | 4 comments

Every second Saturday morning, I can be found at my favourite café having a very important date. Aaron has a rehearsal at that time each fortnight, so it’s become habit for me and the kidlet to traipse to the café for coffee, breakfast and a chat. (Judge me all you like – I gave in to the thirteen year old after a coordinated campaign from a number of people, including one of the owners of this café and the kidlet’s grandparents. Apparently it’s a birthright of kids with Italian heritage to be provided with legal stimulants from when they are children. At least, that’s the story they sold me…while they reminded me that I was drinking the dregs from my dad’s evening espresso before I could talk. Anyway, the outcome of their campaign is the kidlet sits there with her latte feeling all grown up while I silently remind myself caffeine is not crack in an effort to not feel like a completely negligent mother. But I digress…)

The kidlet and I spend quite a bit of time alone together. I often drive her to school or collect her afterwards, as her school is halfway between home and work. And we have a lot of evenings together while Aaron is playing a gig somewhere around town. But those car trips are rushed and usually involve checking off what is happening that day/homework requirements after school and those nights at home usually see us snuggled in front of the TV watching a favourite movie. I love these times, but they’re not really built for detailed conversations.

Our Saturday mornings are leisurely and free of screens. Other than greeting the staff at the café (one who has appointed herself as the kidlet’s ‘other mother’ – something our daughter is more than happy to endorse, because Jo is far cooler and more fun than me!) and said hi to the other regulars, we sit down and focus just on each other.

It is these Saturday morning catch ups that are the most revealing, and provide me with great insight into what ‘s going on in her life. With no need to rush and the comfort of being somewhere safe, she shares things that just wouldn’t be shared in the rushed car trip to school in the morning.

My job on these dates is simple. Listen. Nod my head so she knows that I am paying attention. Don’t impose my ideas on to her. Try not to be shocked when she says anything I wasn’t expecting. And when she asks questions, I try to frame my answers in a way that hopefully helps her feel supported and encouraged to make her own decisions, rather than trying to foist my own onto her.

A few weeks ago when I was seeing my endo, I realised that she takes the same approach with me that I do with the kidlet. I always feel that I have her complete and utter attention and I never feel judged by her. While she may want to just tell me what to do and have me follow it to the letter, she doesn’t do that. When I ask questions, she helps guide me to an answer that I feel comfortable with.

I really believe that my endo’s style has meant that I am far more confident about the diabetes decisions I make each day. Knowing that I have been able to troubleshoot, or make a choice after weighing up all the options gives me conviction and assurance that my decision-making skills are sound, all the time knowing that she is there if I need to ask something.

I am sure it’s no accident that I am this way with my kid. I’ve seen how effective it is in helping me do better with diabetes…and it’s certainly translatable to parenting a teen!

Recently when I was preparing a talk for practise nurses about the way for both HCPs and PWD to get the most out of healthcare appointments, I came across this:

Listening doesn’t seem to come easily or naturally to a lot of us. We want to jump in and interrupt. We want to offer our suggestions (because of course we know best!). We want the person to listen to us and do what we say. And we want to fix things. We so want to fix things!

But the best thing we can do in a lot of cases is to just shut up. I frequently employ the WAIT (WhyAm I Talking?) approach as I have found it is the best way to truly gauge what is going on and find out things that are too easily missed.

Those Saturday morning catch ups are illuminating for me. As well as seeing how my daughter is dealing with the sometimes tricky trials and tribulations of teenage-hood, I am being allowed a front row seat to a lot of what is going on in her life – things I may otherwise miss. Most of the time these days, she doesn’t need me to tell her what to do as she is working out stuff. She needs to feel safe, comfortable and not judged as she bounces her ideas off me; and to be given the space to learn how to weigh up options, make errors in judgement and work out what is best for her.

And that sometimes, making a decision that isn’t necessarily the best may not be the worst thing in the world. (At least – that’s what I’m telling myself when I see the look on her face as she takes her first sip of coffee for the day, and I know I have been complicit in her teenage caffeine addiction…)

Ninety seven years ago

July 27, 2018 in Uncategorized | 1 comment

I’m revisiting this piece I wrote three years ago about why this date – 27 July – is important in the history of diabetes. The original post can be found here. And below is the 2018 (or 97 year) version.

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There has been lots of discussion about what happened 97 years ago today – on 27 July 1921. University of Toronto scientists Fredrick Banting and Charles Best successfully isolated the hormone insulin. Today, that means that I am alive and kicking, 20 years after my islets stopped making any.

It means that type 1 diabetes treatment moved from being a starvation diet and not much else, to injecting a drug that was life giving and life saving.

It means that I take a drug that while giving me life, is also lethal and if not dosed carefully and with great consideration can cause terrible side effects.

It means that people with diabetes don’t die terrible, agonising deaths simply because they were diagnosed with diabetes.

It means that I need to be able to do crazy calculations to ensure what I put into my body completely and utterly imperfectly mimics what those with functioning islet cells do completely and utterly perfectly.

It means that there is a treatment therapy that gives us hope and life and allows us to live – sometimes very long, long lives.

It means that each and every day I feel fortunate to have been born when I was and not 100 years earlier.

It means I take for granted that I have access to a drug that keeps me going.

It means that there are far too many people around the world who still do not have access to the drug I take for granted. And 97 years later, that is not good enough.

It means that it was 97 years ago – 97 years ago – since the discover of insulin to treat diabetes and we are still without a cure.

And it means that I wonder when there will be the next breakthrough that is as significant and meaningful and life changing and life saving as what those two Canadian scientists discovered 97 years ago.

But mostly. It means that I live with hope. Hope that those scientists are somewhere working away, and perhaps – just perhaps – are about to find that next big breakthrough.

Five years

July 25, 2018 in Babies, Family, Real life | 6 comments

I may have mentioned before that I use an app called Timehop. It cleverly collects photos and posts from Facebook, Instagram, Twitter and other social media platforms, and serves them up to me as an account of what I was up to on this day over the last ten or so years.

Mostly, Timehop is a source of great joy. It shows photos of lovely family and friends moments, exciting things happening at work and our travels. Or it shares tweets that make no sense in isolation, but if I click on link, am taken back to long-forgotten discussions that made complete sense at the time. It’s fun and each day, makes me smile a I remember some pretty great moments.

But around this time each year, I am reminded of what was going on a the end of July 2013. And I don’t smile fondly. Because it remains one of the most difficult times of my life, and remembering it so clearly stirs up a lot of sadness.

This time five years ago, I had miscarried a much-wanted baby. The miscarriage (and D & C) happened while we were on holidays in New York, but I needed another surgery once I returned home.

Had the pregnancy gone to plan, there would be a little four year old in our life. I can’t really imagine it, to be honest. I think of everything that has happened since July 2013 and wonder how different life would be today if there was a little one running around. We’d be thinking about a school start in the new year and all that comes with it.

But, life doesn’t always go to plan. This particular derailment can’t really be explained – it was just one of those things. Twenty years of diabetes has taught me that there will be occasions where I will face curve balls. Sometimes over and over again. But even with the understanding that diabetes brings about expecting the unexpected, there is little solace in dealing with pregnancy loss.

It’s five years ago now. It feels as though a lifetime has passed. And at the same time, it feels no more than a baby’s heartbeat ago.

I like to celebrate anniversaries. Diaversaries are given the fanfare they deserve around our place, with high fives and pats on the back as another year of dealing with diabetes is ticked off an imaginary calendar.

This anniversary doesn’t get celebrated. But it does get acknowledged. This week, I’ve been imagining four year olds who remind me of our darling girl when she was a cheeky four year old. But I know this one would have had a personality all of its own, and been a force to reckon with in different ways. And I am thinking about what life would like with two kids, and how our daughter would have adjusted having a younger sibling following her around. I wonder how our house would breathe differently, reflecting a little one’s existing, picture books that have been put up on high shelves once again scattered around the floor.

These thoughts do make me smile.

But my smile when I think of these things is not a happy smile. It is a smile of regret, loss and grief.

I will buy some white flowers for the kitchen table today, and watch them as they bloom. And remember. Remember the time when I thought that we would be bringing home the baby growing inside me to add to – and complete – our little family. And how sad I am that we never did get to meet.

Best laid plans

July 24, 2018 in Diabetes, Real life | Leave a comment

So after two recent posts about back up plans (one from me about why we should be offered latest technologies at diagnosis, provided we are taught the basics in case the tech fails, and one from Grumpy Pumper about the weight he gives back up plans and basic tech to ensure he’s never left high and dry), you would think that I have this whole fall-back situation thing sorted.

Alas…

‘Hi, I’m Renza and I’m not good at diabetes.’

I generally carry around two small purses in my handbag. (I should point out that the purses change because I am addicted to Shop Casualty Girl pouches and keep ordering more.)

Click on image to go to Casualty Girl’s e-shop

Purse one holds my glucose meter, which means that I can calibrate my CGM as required and, if for any reason my CGM stops, I can still keep an eye on my glucose levels.

Purse two is my spares bag and in there I have all I need to completely swap out my pump cannula and cartridge, refill my cartridge with insulin, replace my pump battery and, if for any reason my pump stops, I have a back-up plan for my back-up plan with a baby syringe in there to continue the (manual) infusion of insulin until I get home and hook up my spare pump.

I feel pretty damn supercilious just writing about this, because, honestly, I am so freaking organised that I should be given some sort of organisation badge. (I never did Girl Scouts…is there a badge for this? Can someone make me one?)

And, it means that I confidently feel that whatever happens, I can keep doing diabetes – albeit not my preferred way – until I get home and return to normal broadcasting with the tools I like to use.

There is one thing required for this to all work: actually having those two purses with me at all times.

Today, I have neither of them.

Today, I am the living embodiment of a Robert Burns poem.

Now look, I’m not really panicking because I actually do have a back-up plan for my back-up plan for my back-up plan. I work a grand total of about fifteen minutes from home. If everything completely turned to pot, I could get in my car and head home to fix the situation. Also – I can literally see the Royal Melbourne Hospital from my office window, so if getting home wasn’t an option (not sure why that would be the case, but let’s pretend there was a hurricane, or a pack of wild monkeys suddenly took over the city) I could wander over there and beg someone to give me the supplies to get my external pancreas working again.

So, all in all, apart from feeling a little like a disorganised, shambolic mess, it’s really not going to impact on me all that much. But it has reminded me that complacency isn’t something that we can do with diabetes.

Diabetes doesn’t give us the space to do that. It demands vigilance and attention at all times. Shame I’m neither vigilant nor attentive.

Final word to Effin’ Birds…

Click image to go to Effin’ Birds’ Instagram. You should follow for daily sweary birds updates.

In my shoes

July 23, 2018 in Communication, Devices, Diabetes, Real life | 2 comments

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!

Keeping perspective at diabetes conferences

July 20, 2018 in Conferences, DOC, Peer support, Real life | 3 comments

Part of my work involves attending diabetes conferences both here and around the world. Sometimes I have a speaking gig, other times I’m there for meetings, and always I’m there to learn as much as I can about the latest in diabetes.

I love this part of my job in equal measure with not loving it. The ‘love it’ part is because I get to meet with and hear from some absolute superstars in diabetes research and get front row preview seats to what they’re working on. And I love it because I get to see other advocates who are there for the same reasons I am.

The ‘not love it’ part is because I spend a lot of time away from my family and ‘real life’. I feel enormous mother guilt (this time I missed the kidlet’s Winter Music Concert) and feel lousy for leaving lists of plans and schedules for people other than me to manage. Plus jet lag. I talk about jet lag so much because these days it is absolutely kicking my arse as it turns me upside down and into a bumbling, confused, unintelligible mess.

I realised when I was at ADA in Orlando that all my overseas DOC friends have only ever seen me at my jet lagged, time-travelling worst. They get exhausted, grumpy, vague, annoyed me. And they get me doing weird things like falling asleep in front of them only to suddenly get a second wind and become almost hyperactive where I speak a lot – and really quickly – about weird things such as Australian-isms that I believe they absolutely must start to use in their day to day vernacular. (Only click on this tweet if the eff word and spiders don’t offend you…)

And then, I reach a point where I abruptly stand up and say ‘That’s it!’and just leave and head to bed, often mid-conversation. Why they still want to talk and hang out with me is actually a mystery!

But I am glad they do want to spend time with me, because sometimes, being at a diabetes conference is really hard going emotionally.

We sit there listening to some pretty tough stuff; scary stuff. We hear ourselves being spoken about as ‘subjects’ in research which takes away our ‘human-ness’ and makes us sound like rats in a lab.

We are referred to with words that make us sound like petulant children (‘non-compliant/non-adherent/failed’ etc.) and all we can do is tweet our frustration (and language positions statements) begging that presenters be considerate in the words they use.

We hear scary, scary tales of all the things that can go wrong with diabetes in a variety of different situations. I reluctantly walked into an 8am session on diabetes and pregnancy, and even though that ship sailed a few years ago for me now, I still brace myself for the research showing that diabetes can and will impact on our developing babies, and children once they are born. That mother guilt I spoke of early is gets turned into mother-with-diabetes guilt which is a monster of proportions all to itself. (Of course, the wonderful Helen Murphy’s talk at 8am was not scary or mother-with-diabetes-guilt-inducing. Instead it was full of interesting facts about how APS impacts positively on diabetes pregnancies. Hurrah!)

Diabetes-related complications are spoken about in matter-of-fact ways that zone in on specific parts of our body and suddenly we stop being whole. ‘The diabetic foot/eye/kidney’ is still attached the rest of us, and yet whole sessions dissect them from our bodies and focus solely on that part of us, forgetting how connected we are to them (literally and figuratively!)

We are told about how diabetes increases the risks of so many, seemingly unrelated problems that can only make me feel as though the cards are stacked so against us that, sometimes, diabetes just isn’t fair. (See also – or maybe don’t – this released today…)

We sit there listening to advice on how things could be improved and sometimes, shake our heads at the disconnect between what is reality to those of us actually living diabetes and the ideas from researchers and clinicians. We wonder what – if any – engagement there has been with the people this advice is meant to serve.

It can be – it is– emotionally draining, exhausting, frustrating.

Those moments when a friend’s sideway glance, or eye roll, or a snarky comment in response to yet another kick in the gut because diabetes is all bad news, is a reprieve from feeling a little shaken. (Of course, it’s not all like this. Often we sit in sessions and feel that those presenting are truly championing our efforts and we do high five through those presentations.)

And those evenings when the sessions have finished, and the official dinners are over and we simply sit together, debrief, refocus and put diabetes back in perspective, make me whole again. It’s the same at every conference. The people may change depending on the location of the conference, but there are always people there. And I’m grateful for that, because I may return home exhausted and jet lagged, but I’m not overwhelmed at what I have seen and heard. Which I fear is how I would be if it wasn’t for the caring, smart, understanding, wonderful people in this tribe .