Diabetogenic

Collection

April 6, 2016 in Diabetes, DOC, Language | Leave a comment

Collective nouns are one of my most favourite things.

I was given a gorgeous book as a birthday present a couple of years back and love flipping through the pages, remembering the collective nouns and admiring the stunning illustrations.

From ‘A Compendium of Collective Nouns’ from Woop Studios. Click for more!

Today, I thought I would throw it out there and start to collect some diabetes collective nouns. (I only wish I could draw so they could be accompanied by images…)

A BRILLIANCE of PWD

A POSSE of PWD (at a diabetes conference)

A HUSTLE of PWD (meeting for a drink)

A DEFIANCE of PWD (when asked ‘should you be eating that?’)

A SADNESS of diabetes diagnoses

A KINDRED of DOC folk who are more than just diabetes peeps.

A BAZILLION of BGL strips

A SUPPORT of family

A SPLURT of bloods

A HAPPINESS of Nutella jars

Source

A FAILURE of kinked pump lines

An EXPENSE of sensors

A JUDGEMENT of HCPs

A ROBOTIC of CGM users

A DELIVERY of insulin pumps

A HOPELESSNESS of NPH insulin

A BEEPING of BGL meters.

A SAVIOUR of dirt-covered-jellybeans-discovered-at-the-bottom-of-one’s-handbag-(or-in-one’s-car-glove-box)-when-there-are-no-other-hypo-treatments-around.

A FRUSTRATION of consistently high BGLs

An INTELLIGENCE of diabetes blogs

A CERULEAN of Blue Fridays

A BINGE of hypos

And finally my favourite diabetes-related collective noun. I was thrilled when I discovered the unofficial mascot of the DOC already has a collective noun and it is so fitting:

A BLESSING of unicorns.

#LanguageMatters

April 4, 2016 in Advocacy, Awareness, Communication, Diabetes, Language | 3 comments

This Thursday is World Health Day and the spotlight for 2016 is being shone on diabetes. In the next few days, we can expect to see diabetes mentioned in the media a lot. There will be numbers describing the size of the ‘epidemic’, there will be scary pictures and there will be threats about what will happen if we don’t all act NOW.

Much of what is written will be by journalists who do not have an in depth knowledge of diabetes, so the chance of them getting it wrong – or, at least, not finessing the details – is pretty high.

What upsets me most is when people with diabetes are not represented particularly accurately. I don’t like the pity party often thrown for us – especially because once we get there, the only food served is sugar free. And carrot not in the form of cake.

Seeing myself referred to as a ‘sufferer’ or ‘victim’ infuriates me, and the assumptions and the blame and stigma associated with a diabetes diagnosis makes me even madder.

Those of us living with diabetes (or with someone with diabetes) understand just how much language matters when talking about diabetes.

There are tools available that can point journalists in the right direction when speaking about and to people with diabetes – and the issue of diabetes.

The terrific Team Novo Nordisk has made real strides with providing the media outlets covering the team with some practical tips and a ‘Guide to Communicating About Diabetes.’

And, of course, the Diabetes Australia Language Position Statement* is also a valuable resource that offers suggestions of language and words that motivate and empower people living with diabetes, highlighting how negative and inaccurate language can be harmful and discouraging.

The fact that World Health Day is focusing on diabetes is a good thing in my mind, because it means that people are talking about diabetes. And if we can, in some small way, shape the dialogue – or at least, shape the language being used when speaking about diabetes – the outcome may be a better representation of life with diabetes. We can bust myths, set the record straight and explain how paralysing diabetes-related stigma can be.

This is not only about defining the different types of diabetes, although there are times in the dialogue that would be helpful. It is about offering a fair, precise and considerate picture. And it is about remembering that even when talking about huge, scary numbers that clearly define the issue, there are people involved who are living with diabetes every single day, doing the best we can with the cards we’ve been dealt.

So, with this in mind, I am making a slight pre-emptive strike and asking that anyone writing about diabetes does so in an accurate and respectful way. I will be tweeting throughout the week using the hashtag #LanguageMatters and, when I see examples of writing that is neither accurate nor respectful, will be tweeting the journalist and source directly. I won’t be aggressive; I won’t be angry. But I will call them out.

If it’s something you are interested in, please get on board. Let us tell the real story of diabetes OUR way. #LanguageMatters
*I work for Diabetes Australia, however at the time this position statement was developed, I worked for Diabetes Victoria. During the writing of this statement, I provided some comment (from a consumer perspective) to the ACBRD team who composed the position statement. The ACBRD is a collaboration between Diabetes Victoria and Deakin University.

Overkill

April 1, 2016 in Hypo, Lows | Leave a comment

I am not a micro manager. In fact, with the team I managed in my previous job, I was possibly the furthest thing from a micro-manager, instead working with the team to get them in a position where they were adequately able to manage their own responsibility areas, while I gently stood in the background helping out when I needed. I was there to advocate and champion for the team as a whole, and team members individually and fly the flag of ‘hey-speak-to-people-with-diabetes-before-you-plan-things-for-us’.

However, in the last few weeks, I have become a micro manager. Not of people. Of my diabetes and the results are not good.

In fact, the results look like this photo Aaron took at some point over the long weekend.

Photo credit: Aaron (who captioned it with ‘Renza: I don’t like Zappa when I’m hypo.’ Which is true. I was finding him quite grating at the time.)

I had been in hypo city for a while, which is not a nice, fun place to visit. It is awful and it seems that once you get there, the only accommodation is Hotel California-esqu.

I have been over-responding to every impending, suggested or even hinted at high, when I should have simply sat back and waited. Insulin takes time to work – that’s just a sucky fact. I don’t always remember to bolus before I start to eat – or ten minutes before as required at times – and sometimes the delay means that I wind up a whole lot higher than I would like before the insulin can do its thing.

I found myself low about 45 minutes after I had just eaten a huge Easter afternoon tea because I was jumping at ghosts – or rather, rising lines on my CGM – instead of waiting for the bolused insulin to do its trick and cut through the higher fat content food I’d been eating. So, I bolused some more.

Where I should have been sitting tight and being patient, I would second-guess and do something (for the sake of doing something) – and often get it wrong.

This is the other side of CGM. (Disclosures abound about how fortunate I am to have access to this tech. I know all of that. Disclosure also that I love this technology; it is amazing.) The flip side is the over-management and that is where I found myself for most of the long weekend.

Remembering my basic principles of management (whether for people or diabetes), I have spent some of this week stepping back. I’ve not jumped in. I’ve waited more to see what has happened. Watch – Listen – Learn have been the three things I tell myself before leaping in to act. I’ve stopped reacting at any upward trend, thinking about how much insulin is on board yet to do its thing; how long the food I’ve eaten takes to digest and whatever other myriad factors need to be considered before giving myself more insulin.

I hate being high, so I understand why I try to avoid it. But I also hate being low. I’ve yet to find balance in diabetes, and in all honesty, I don’t think I ever will.

Eighteen times tables

March 31, 2016 in technology | 3 comments

I’ve always been a bit of a numbers nerd. I actually find maths quite beautiful – there are patterns to be found and I love how there is a solution to be found. I also love how we apply maths to many everyday activities. It’s something that I have revisited in the last few years with the kidlet, who unfortunately hasn’t inherited my love of maths. She’s actually really quite good at it all, but is clearly more drawn towards literary things rather than the numerical.

I learnt my times table as a kid and have never forgotten them, and it is possibly one of the reasons that I have never found the maths that comes with diabetes particularly bothersome.

However, today, I realised that whilst I know up to my 12 times tables without batting so much as an eyelid, I am lousy at my 18s. I can get up to 18 x 5 and then I need to start using an abacus or my fingers and toes to count. Or a calculator.

But I really need to learn them!

Why? Because today, this is happening:

Yes, my Apple Watch is finally doing what it was intended for. (By me. Probably not by the clever folk at Apple who invented it. I’m sure that their thought process was not exclusively ‘Let’s make this a tool for people with diabetes to see what their glucose levels are doing.’)

Anyway, I spent some time yesterday morning with a couple of very clever blokes, one of whom is possibly the smartest techy person I have ever met, and within the time it took to drink a couple of coffees, he had hooked me, and my Apple Watch, up to the US Dexcom app.

Of course, being an app for the US market, it is reading in mg/dL, instead of the far cuter sounding mmol/l so my head is slightly being done in when I look at it and see numbers that, in a diabetes sense, make no sense. Right now, I am at 91 and I know that I am fine, but I feel like I should be panicking and doing something. Anything!

I have no idea when the app will be launched in Australia – hopefully it will be very soon. But in the meantime, I am simply going to have to learn my 18 times tables. Which is probably going to be all okay until I am low and then I can’t even remember what one plus one equals. Actually, this could be a disaster!

The way that we manage diabetes is certainly changing. Wearable tech means that our diabetes management tools are integrated into our…well…living life tools. At the moment, I can check my glucose levels, my heart rate and see how many steps I have done for the day all on my watch.

Is this a good or a bad thing? Well, for me, I want my diabetes management to be as smooth sailing as possible and as unobtrusive as possible. Being able to quickly and quietly see how my glucose is tracking by simply looking at my wrist is brilliant. I love it! Integrating diabetes into life is wonderful and having to cart around fewer devices is a huge win as far as I am concerned!

While I have never had a problem ‘doing diabetes’ wherever I am, not everyone is comfortable pricking their fingers and drawing blood, or injecting themselves while there are others around. Perhaps they have been made to feel uncomfortable by others around them, or perhaps they feel self-conscious.

For those people, having discreet tools available – tools that are built into everyday technology such as phones and watches – may mean that the ease with which they are able to go about their diabetes tasks equals more doing of those tasks.

So, today, I am happily checking my watch every now and then to see how I am tracking and marvelling at the simplicity of it all. If only I didn’t need to be some sort of maths genius to interpret the number!

18-times-table-multiplication-chart

A good Friday. And weekend. And Monday.

March 25, 2016 in Food, Real life | Leave a comment

I remember when absolutely nothing was open on Good Friday. I used to say that it wasn’t a particularly good Friday because there was nowhere to go to get a decent coffee. These days most of our favourite places are open across the Easter weekend. Well, not all…

The DOC boys’ excuse for not working on Good Friday.

This four-day break seems to be mostly about food, which is never a bad thing.

It started like this with a batch of the teeniest-tiniest cupcakes to take into work yesterday.

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This morning kicked off with a visit to a café for breakfast (might not mention the bacon I had with my breakfast to my dad…), followed by popping into a favourite bakery for the best hot cross buns in Melbourne.

And the rest of the weekend will wind itself around cups of tea at home, or coffees in cafes with friends, a big family lunch on Sunday and an assortment of chocolate eggs (and bunnies) and baking.

There will be reading and movies and a music gig here and there.

It won’t all be about food. There will be some exercise too. I’m in a basketball battle with a few diabetes friends, so I’m getting a good workout there too… (Annie – this is ALL your fault!)

All in all, a few restful days to look forward to. If you are lucky enough to have the time off: enjoy! And if you are working – thank you!

And don’t forget to Give That They May Grow. No one wants to use the Royal Children’s Hospital. But we are so glad for it if we need to.

I feel it

March 22, 2016 in Awareness, Diabetes, Real life | 6 comments

Despite what the media may say every time they herald the ‘end to painful injections’, it has never been the needles, the pump insertions, the finger-pricks or the sensor insertions that cause the most discomfort when it comes to living with diabetes.

They are not even where I feel diabetes most.

I feel it in my heart with an increased heartbeat when I feel the fear of ‘what could be.’

I feel it in my eyes as I see the evidence of diabetes on my body with devices, healing and healed scars, tape residue and a pump hidden in my underwear.

I feel it on my skin with the goose bumps I get when hearing the words ‘me, too’ from someone who understands what living with diabetes is truly about.

I feel it through my veins as I sense blood being pumped faster to alert me to a low.

I feel it in my smile when I see – and feel – the power of support and connectedness.

I feel it in my tears as they roll down my cheeks with the frustration of never seeming to be able to get it right.

I feel it in my fingers as I load insulin into a cartridge, feel for knots in an infusion line or grope around in my bag for my kit.

I feel it in the dark recesses of my mind when I consider the scary things that only get an airing when my defences are down.

I feel it in the pit of my stomach as the guilt that inevitably comes to the surface. Guilt about the burden I am on my family and friends.

I feel it on my lips as the tingling of a low or the dryness of a high remind me that I must attend to my blood sugar.

I feel it in my hip pocket as I fork out more money for more strips, for more pump consumables, for more sensors, for more insulin, for more health insurance, for more medical costs. Because there is always more.

I feel it in my words, as I struggle to articulate exactly how I feel, what I need, what I want.

I feel it my nose as the smell of insulin hits and automatically the words ‘It’s the smell that keeps you alive’ jump into my head.

I feel it in my mouth – the sickly sweet aftertaste of the jelly beans or the pineapple juice I have consumed when I just want to sleep.

I feel it in my ears as I hear the click of a lancet device, the beep of an alarm, the ticking of insulin being delivered.

I feel it in my feet as I walk barefoot to the kitchen and there is the sensation of a rogue BGL strip on the floorboards.

I feel it underneath me when I sleep and I roll onto a pump or lie over my sensor.

I feel it. It is everywhere.

People cannot be trusted!

March 21, 2016 in Engagement | 1 comment

I am all for consumer engagement. ‘Ask people what they need,’ I say all the time. ‘Give the people want they want!’ I implore audiences at conferences. ‘By consulting, you get buy in,’ I promise in meetings.

And then, what happens? People are asked. There is a public consultation. There is buy in. And the result?

This. This is the result.

This is why we can’t have nice things!

Thanks to Melissa Lee for posting the link on Facebook earlier today. I was laughing so hard I had to close my office door to hide the tears rolling down my cheeks.

P.S. Regardless, I am still a huge advocate for consumer engagement.

P.P.S. My vote is actually for RRS Pingu.

Putting into words my words

March 18, 2016 in Awareness, Communication, Diabetes, Family, Language | 1 comment

I speak and write about language a lot.

I will continue to do so, because I truly believe that the words that engulf us when we speak or hear about diabetes have a direct impact on how we feel about our condition. The emotion cannot be removed from it and negative or judgemental, stigmatising or blaming words make us feel…well….negative, judged, stigmatised and blamed.

I frequently point my finger at healthcare professionals for their use of judgemental language and the media for their use of poorly researched facts and sloppy language. And I note lazy jokes where my health condition is considered a punch line.

You may have read it here or heard it when I have given a talk (it will probably get an airing tomorrow!). And if you follow me on Twitter, it is highly likely you will have seen me tweet the link to the Diabetes Australia Language Position Statement to someone who hasn’t quite got it right.

But I have never ever been able to put into words how I feel about the language that some of our loved ones – or caregivers – use when speaking about diabetes and how it can – completely unintentionally – be damaging.

My dad – love him to pieces – sees my diabetes as an illness. He thinks that I am sick. I have spoken with him over and over about why that is not the way I see my diabetes and that I am actually incredibly healthy, and he absolutely means to harm when he uses the words he does. But they do affect me.

I sat in a meeting while low – managing perfectly well, but having explained the reason I was munching on glucose tabs – and my manager at the time asked if I needed a nurse. He was concerned, but I realised he also didn’t trust my ability to look after myself when I am more than capable – something I had demonstrated to him over and over again.

I am not the parent of a child with diabetes, so I don’t get to play in that space and comment. But I do have real concerns at times. I worry about the language that is used around kids and the way that the child’s diabetes is being represented.

So that is why when I woke this morning and read this piece over at A Sweet Life from Moira McCarthy Stanford, my words stopped. I couldn’t even think straight for a moment because every single thing she wrote resonated so strongly. I actually burst into tears. (I was low, so there was that too. But honestly, I just couldn’t believe how clearly and articulately she put into words my thoughts.)

Moira’s blog post should be required reading for anyone around someone with diabetes. She nails it. Perfectly. I urge you to read it. I urge you to share it. If you are part of a family support group, send it to all members of the group and discuss is amongst yourselves. You don’t need to agree with it all, but it is definitely worth having a robust and honest discussion about it.

If you are a parent (my parent!), I hope that you understand why these phrases and words have the potential to be damaging.

At no time would I ever dismiss the difficulty of having a loved one with diabetes. I can’t imagine what it takes to watch us living with it and not really be able to do something. I would never underestimate your role.

But sometimes, the words you use underestimate ours. Moira – thank you for not doing that.

Interweb Jumble #14

March 17, 2016 in Awareness, Communication, Devices, Diabetes, Diagnosis | 1 comment

My in-laws gave me a beautiful cherry tree for my birthday last year. We planted it in the middle of our garden so we could see it whenever we are in the back part of our house. A couple of weeks ago, after a particularly brutal day of blistering heat and blustery winds, all the leaves were torn from its spindly branches.

I looked out the kitchen window and saw it standing there completely naked and thought that I had killed it.

Today, it is covered with new growth and is looking gorgeous. I didn’t kill it. It just needed a little time to recover from the nasty weather and some space to regrow.

It’s autumn here, so the colours are starting to turn and as I drive home down a stunning tree-lined boulevard, golden leaves trickle down onto my car. I want to jump out and stand in the middle of the road and twirl in the leaves, which would be dangerous given that there are trams and bikes and cars. But it is so lovely.

I love watching the seasons change. I love that the red-golden-brown of autumn is just hitting here as the spring starts to hit my friends in the northern hemisphere. Friends in the UK are posting photos of daffodils and US friends are showing photos of sprouting gardens, devoid of snow. And I looked at our fireplace the other day, thinking that it wouldn’t be long before it would be crackling each evening.

We’re already over half way through March and I am pretty sure that the year will be over before I know it. And there is so much going on in the world of diabetes all the time, all over the place.

Dexcom app

Earlier this week, my US friends were all abuzz with the excitement of the updated Dexcom G5 App which, amongst other things, displayed BGL data directly to their Apple Watches, rather than the push notifications that we currently get.

I hungrily searched to find if the update had been – or was about to be – launched here in Australia, but unfortunately, it hasn’t as yet.

I am not sure when it will be here. I am not sure if it will be here. But I am bloody frustrated that it is not here now – especially considering I bought my Apple Watch in June last year for this exact purpose.

Diabetes, infertility and pregnancy loss

Kerri Sparling is a dear friend of mine and I was so pleased when she made public her exciting news last week. I couldn’t be happier for this darling girl and her family.

She bravely wrote about the infertility she had been dealing with for a couple of years and the miscarriage she experienced in the middle of 2015. I say brave because pregnancy loss and infertility is still something that is shrouded in stigma and shame. And it shouldn’t be.

When I miscarried for the first time, before the kidlet was in our life, I told no one. I was so ashamed and felt hopeless. But I decided after my second miscarriage that I would talk about it. In some cases, people were quite uncomfortable with the candour and honesty I shared. But for the most part, women were glad I had opened up and they shared with me their stories, too.

While I was certainly doing it to help with my own healing, I was also doing it because I didn’t want others to feel the same isolation and shame that I had felt.

Thanks Kerri for using your considerable reach to bring light to this issue. Infertility is terribly difficult to manage. Diabetes makes it even more so.

Diabetic Living Magazine

Check it out – I’m in there!!

Patterns

I have a love of patterns. Stripes, of course, will be my first love and rarely a day goes by when I am not wearing stripes of some sort somewhere on my body.

But I have also developed a love of many other patterns, including anything with a nautical theme, spots and gingham.

And today, I am rocking a new argyle patterned patch around my new sensor. Rockadex is an Aussie company started by a mum whose child has type 1 and offers a great selection of patches to help keep CGM sensors holding on.

Megan from Rockadex kindly reached out, offering to send me some samples of her product, but I’m a big believer in supporting small business, so I declined. And purchased some for myself. My order arrived within a couple of business days and a pile of gorgeously coloured patches tumbled from the envelope when I tore it open. Today, I’m rocking an argyle patch. Details about the product and how to order can be found here.

Rocking my Rockadex patch.

Huge world

We hear all the time that social media makes the world feel very small and how we are connected with people from around the globe at our fingertips. I say it all the time. I believe it.

Except when I don’t. This week, I am really feeling the distance between my friends in the northern hemisphere. Despite tweets and Facebook posts and even a video message, I really wish I could sit down and have a cuppa with them right now. It’s a long time until June – the next time I will be visiting the US – and even longer until September when I will be in Europe. Sometimes, distance does really suck.

For no particular reason, I wish I could feel the embrace of those friends across oceans – literally not just virtually – for a bit. I feel like I need those stores built up at the moment.

Living Well

I’m returning to my old stomping ground on Saturday, presenting at Diabetes Victoria’s first Living Well event for 2016. The event is focusing on going back to basics and there are two separate streams – one for people with type 1 diabetes and one for people with type 2 diabetes. Read all about it over at the Diabetes Victoria blog. And come along and say hi – I’m speaking on a panel in the type 1 diabetes stream!

Beautiful writing

The lovely Annie Coops always writes so, so beautifully over at her blog and this story about her diabetes diagnosis is stunning.

And more

There was an interesting piece in the New York Times over the weekend from Allison Bond, an internal medicine physician at Massachusetts General Hospital. She wrote, most eloquently, about reading patients’ obituaries gives a lot of perspective to treating doctors. There is much to love and quote from her short blog, but this particular thought caught my attention – and my breath in my throat:

‘So when patients do pass away, their obituaries are a gentle reminder that behind the illness lies a story and a unique human being. This is something that is easy to forget, but vital to remember.’

If only it didn’t take death for healthcare professionals to remember that.

Rollercoasters

March 15, 2016 in Diabetes | 2 comments

Speed. Super fast free-falls. Crazy highs. Your heart races in anticipation of what is around the corner and just when you think you have worked out what is going to happen, you wind up going backwards, or find yourself hanging upside down. In the dark. You plummet without the ability to stop, or you feel yourself going higher and higher and higher – knowing that there will be an inevitable and uncontrollable drop and all you can do is throw your hands up in the air and scream really, really loudly – loving every minute of it!

Sounds awful, but rollercoasters are actually really fun.

Unless, of course, it is of the BGL type. Then they are just repulsive.

Diabetes was really kicking my arse and every other part of me for few days last week.

I couldn’t seem to find a middle ground, and was either struggling to bring my BGL from the yellow zone or up from the red zone. That is how I have come to see my diabetes – the zones on my CGM trend.

I spent far too little time in the comfort of the grey zone – my target range.

And the aftermath of the extended periods spent in yellow (above the target range) or in red (below the target range) was exhausting me beyond belief.

I write a lot about the hypos that won’t quit. I’ve had a few of them in recent times and the sticky, stubborn and stupid lows knock me for six – sometimes for days afterwards.

But the belligerent highs are just as awful. Their aftermath is completely different – a heaviness in my arms and legs, shortness of breath after climbing a flight of stairs and a bone-tired exhaustion that takes a few days to get over – but no less debilitating.

Combine the two of them, and there is an overwhelming sense of defeat. I ache all over, struggle to get out of bed in the morning and fall asleep as soon as I sit down on the couch.

The frustration of pouring juice down my throat, or pumping insulin into my body gets old very quickly. And with the recovery time between the yellow and red seemingly shrinking, bouncing back after an annoying low or high is getting rougher and rougher.

In the never-ending and downright impossible aim of in the zone BGLs, I found myself with no option but to employ the big guns. I sat down and turned on ALL my CGM alarms. To avoid getting overwhelmed and pissed off with the wailing and beeping and vibrating warnings, my basic setting is ‘fall rate’ (which alerts to BGLs dropping too quickly) and low range. The fall rate alert is enough to catch a lot of lows – it does a great job of telling me they are coming and I usually act upon them.

I turn off the repeated high and rise rates because they start to get on my nerves very, very quickly. But I turned them all back on now and found they forced me to at least acknowledge I should do something. And most of the time I did.

I knew this was a short-term fix. I knew that I probably needed to do some basal rate checking – it’s been a while since I really checked to make sure that they were right. I knew that the weather was not helping. I knew that my change of routine with a new job is impacting on my BGLs. I know it all.

And I also know that diabetes, when behaving like this, is a full time job on its own. I felt as though I was barely staying above water. Despite being in a good headspace for dealing with diabetes and using the full arsenal of technology at my disposal, I still found it very difficult to stop this rollercoaster.

This week, things certainly do seem smoother sailing. The rollercoaster seems a little more friendly and a little less horrific. And I feel more equipped to cope and manage. At least for today. Who knows what will be around the corner.