Diabetogenic

Interweb jumble #10

October 6, 2015 in Awareness, Conferences, Real life, Social media | 2 comments

Clearly, jet lag, daylight saving and time zone confusions have meant that any creativity left in my pea-sized brain has been zapped to non-existence. As has the ability to order the million things that I have read in the last couple of days.

So, with a slight inability to organise my thoughts clearly, here are some things on my mind today.

Stephanie Rice is not a medical professional (that piece of information is more for her than anyone else)

Yes, another C grade celebrity has been at it again: providing medical advice and pretending to be an expert of everything. Aussie Olympic swimmer, Stephanie Rice, has come under fire for starting a Q&A style section on her Facebook page, where readers could seek medical advice.

Now, part of me wants to say that if you think that asking an Olympic swimmer for anything other than advice about, I don’t know, swimming, you get what you get and you don’t get upset. But this isn’t really about Rice’s readers. This is about the arrogance that she is demonstrating in thinking that she actually has anything to offer here.

I was talking about this yesterday with someone and she looked a little surprised at how annoyed I sounded. ‘But isn’t that kind of what you do on your blog,’ I she asked.

I would like credit here for the incredible restraint I demonstrated in not stabbing her with a (blunt) lancet. I would also like credit for speaking to her with respect as I pointed out that no, this is no what I do here.

What I do here is talk about my experiences (such as my experience of getting annoyed at swimmers who think that you shouldn’t have a medically-prescribed MRI because ‘there is so much radiation’), but never, ever telling people what they should do (such as suggesting that you shouldn’t have a medically-prescribed MRO because ‘there is so much radiation).

Of course, Rice responded with an ‘I’m hurt – I’m only trying to share what I have learnt and how much I now know’ post that is defensive and naïve.

Also, it is where she has it wrong. And it’s where Sarah Wilson and her ‘I-live-with-autoimmune-disease-(as if it is a singular thing)-and-therefore-can-give-medical-advice’ also gets it wrong.

Your advice is worthless. You have no qualifications in medicine, so stop giving medical counsel.

What does have some worth, however, is sharing your story. People connect with that. They hear what you are going through and feel supported. It makes them feel less alone. It is not your job – any more than it is my job – to provide medical information to people.

So stop it. Just stop it.

Live longer

Yesterday, MJA (The Medical Journal of Australia) published an article – Recent advances in type 1 diabetes – authored by some of Australia’s leading clinical experts in type 1 diabetes.

There were some really interesting points mentioned including that, in Australia, the incidence of type 1 diabetes has doubled over the past 20 years.

But for me, the most interesting and hopeful point (which was also the focus of the media release) was the following statement:

Although T1D is still associated with considerable premature mortality, recent findings show that a significant improvement in life expectancy has occurred.

I have always had in the back of my head that my life expectancy will be shortened by fifteen years due to my diagnosis of type 1 diabetes. It’s not all roses and I am not in denial that there will be challenges as my diabetes – and I – get older. But there is some good news in here. And for that, I do have some hope.

Do this survey

Abbott Australia has a series of surveys live at the moment for adults with type 1 and insulin-using type 2 diabetes.

YourSAY (Self-management And You) asks what it is like to live with diabetes each day, specifically looking at the behaviours and attitudes to diabetes self-management and glucose monitoring.

The survey takes about twenty minutes to complete and is open to anyone who meets the following criteria:

Live in Australia
Be aged 18-70 years.
Have been diagnosed with type 1 or type 2 diabetes
Be currently using insulin injections or an insulin pump
Not currently be using a continuous glucose monitor (CGM)

Sound like you? Then hop to it by clicking here.

New look

Go check out The Parents’ Voice. Here, you’ll find the new name and new look of The Parents’ Jury. And while you’re there, considering signing up and becoming a member. The Parents’ Voice is all about improving the food and activity environments of Australian children.

#DOCtober

Grab your phone – or, if you’re old school, a camera – and join this month’s #DOCtober photo challenge. Kerri Sparling is documenting the month in photos on Instagram and on her blog and is asking you to join in. The idea is to find something diabetes-related and post it in social media land for all to see.

I’ve been pretty lax…as in have not posted a single thing…but here is my contribution for today. This is my desk at work with all the found objects from EASD.

Things I’m missing about Scandinavia

Cinnamon buns. Recipe found; baking planned. As soon as the weather cools down and I can consider turning on the oven!

Tick tock

As I’ve mentioned before, I often use the stat that we spend approximately six hours a year with HCPs working on managing our diabetes. It works out to about 0.07% of the year.

On his blog, Manny Hernadez has broken it down and wrote this great piece. He reckons that it is even less, with his calculations coming in at 0.007% of the year.

Whichever what you look at it, it’s not much time at all! And, it serves as a reminder of just how much little time we have professional assistance when dealing with diabetes.

So, remind me again who the expert is?

That’s cruel

I wore a green dress yesterday.

So have been listening to the Bare Naked Ladies ever since.

Diabetes on tour

October 5, 2015 in Conferences, Food, Lows, Travel | 4 comments

I’m back!

Yes – three weeks of conferencing and travelling and walking and eating and doing not much – and yet so much – have come to a jet-lagged conclusion and I find myself back writing, back at work and, most importantly, back with the kidlet. Which means all is wonderful and I am happy.

So, some diabetes highlights/lowlights from my travels.

This at Dubai airport. Double arrows down, a shitload of insulin on board and a grumpy face. Cleary, a lowlight!

Low in Dubai airport

And because I am #NotGoodAtDiabetes, I did it again in Copenhagen:

Low in Copenhagen

And in Stockholm.

Low in Stockholm

Stopping in my tracks (and employing the brilliance of Google Translate) after seeing this newspaper on our last night in Stockholm.

diabetes newspaper in Stockholm

Being so grateful for this sight in the press room at EASD in Stockholm…

Doughnuts at EASD

… because I was low with #ConferenceHypoSyndrome.

Conference hypo syndrome

Days doing this:

30 thousand steps

Which meant crazy days of barely needing to bolus as we walked, walked, walked and walked all over cities.

And days of walking meant carb stops of cinnamon buns flecked with cardamom and sprinkled with sugar in Stockholm. And in Copenhagen, no cardamom, but icing drizzled over their tops. And then, once in Paris, flaky, buttery pastries that left tell-tale crumbs down our shirts.

pastry

And coffee. Coffee. Coffee. Coffee.

And ice cream because when in Paris, one must Berthillon!

In Paris, I came to an abrupt stop when I saw this:

Eugenes

I went in and spoke to the baker who told me that all the pastries were made using low sugar and low fat recipes. ‘Why?’ I asked him. ‘Why did you start this bakery?’ ‘My father has diabetes. And I do too.‘ He said. ‘And so do I,‘ I told him. We bought a croissant and I was expecting something dry and without the wonderful full flavour of a pastry whose main ingredient is butter and was surprised. It tasted delicious. He knew what he was doing! (Questionable marketing aside!)

There was the crappy night where I realised that my pump was out of insulin and, in my handbag changeover, I had forgotten to throw in my ‘spares bag’, so we needed to leave the jazz gig we had travelled halfway across Copenhagen to hear – before it even began – so that we could get back to the hotel and replenish my insulin stores. A complete #EffingDiabetes moment.

On our way from Copenhagen to Paris, I set off every possible alarm at security and was directed to a security officer. ‘I am wearing a medical device,’ I began, expecting the questions and the confusion and the necessary explanations. ‘An insulin pump? You have diabetes?’ was the reply. My stunned look was met with, ‘My husband wears one.’ And she smiled and sent me on my way.

But then in Dubai, as I was escorted to a sparse, windowless room, my ‘I have diabetes, I am wearing a medical device,’ was met with confusion and questions and the need to find a supervisor and, for the first time ever, a request for the letter from my doctor.

But here’s the thing. When I look back at this time away, it won’t be the hypos or the highs or the diabetes that I remember. It won’t be the times I had to stop to guzzle juice, or check my BGL. It won’t be the numbers or the alarms, warning me to eat something.

It will be the days spent catching up with DOC friends. It will be remembering how, with some of these friends, we made ‘riding the worm’ a thing in Sweden. It will be visiting the ABBA museum, and wandering around cemeteries. It will be afternoons being reacquainted with friends who live half a world away. It will be lounging on the grass at Place des Vosges, and sitting in cafes that we have visited before. It will be thinking about the amazing food – like the incredible beef tartar in Stockholm, and Berthillon’s blood orange sorbet. It will be about the waiter at a local café near our apartment in the Marais who didn’t so much as walk as shimmy and sing our breakfast order back to us. In French.

It will be about all those things. It will never, ever be the diabetes. Ever. And that is just the way it should be.

Gone fishin’

September 28, 2015 in Travel | 1 comment

I had a lovely message today asking me if I was okay. I haven’t posted for a few days and they were wondering if all was fine. Thank you for checking in, J! All IS fine. After EASD I have taken a little break and am spending some time in Europe. We’re in Paris, heading back home later this week.

And I’ll be back blogging soon, writing up lots about my time at EASD and the Euro Bloggers Summit. And talking about the food I’ve eaten. And the coffee and wine. And the wonderful DOC friends I’ve seen. And how my diabetes has been behaving. Or otherwise.

See you soon.

Colour my world

September 21, 2015 in Conferences, Devices, Pumps | 6 comments

‘Oh, it’s beautiful.’ These were the words the followed the sharp intake of breath as I saw the Kaleido pump stand at EASD last week. I didn’t say it to anyone in particular – I was wandering the expansive expo hall alone at the time. It was completely involuntary. The stand was a rainbow – I may have said to someone that it looked like a unicorn had thrown up in there.

You can read all about the Kaleido here. This is where you get to read about the specs and the details all tied up in the usual marketing spin that is inevitable when it comes to diabetes devices.

My take on it – after a long chat with one of the developers – is that this is a nifty little pump. It is simple – really simple – with far fewer bells and whistles than available on other pumps. There is no CGM compatibility. At this point there is no bolus wizard calculator, however, following feedback from customers, the company is developing one.

The simplicity is actually part of the beauty in a lot of ways. Those of us experiencing data burnout might find some relief in a pump that is loud and proud in its claims to be a delivery device. Full stop.

Enough about all that. What I want to talk about is how it looks. This could be because I am shallow – let’s start with that – but I think there is more to explore in here.

There was a lot of excitement from diabetes people at the event. There were a number of times that in conversations with fellow PWDs the Kaleido came up. Photos were instagrammed and tweeted, with a lot of attention being given to the gorgeous design and kaleidoscope of colours available. (Get it? Kaleidoscope…)

And inevitably, there were comments from people asking if colour is really something to be getting so excited about.

My answer to that is: actually yes.

At the moment, there are people around the world deciding what colour their next iPhone will be. Apple recently announced a rose gold case to accompany the grey and gold already available. People make decisions based on how it looks, the emotional pull, how it will look with what they are wearing.

So why is it perfectly acceptable for decisions about other tech to be about how it looks and how it makes us feel, but it’s not okay for us to take this into consideration when thinking about which insulin pump we want to use?

Obviously, we need to feel confident that it will deliver insulin accurately, that it won’t malfunction if you look at it the wrong way, or that, if something does go wrong, there is good customer service. Of course all of these things are important.

But if we can assume that it will pass the accuracy test (approval processes are tough!) and that, being a new company, they will be doing their utmost to get their customer service game right, then how it looks and makes us feel is an absolutely reasonable and rational thing for us to consider when making a decision.

The first time I went to EASD (back in 2012), I met Fredrik Debong from MySugr and he said we need to make diabetes sexy. I agree. This is a condition with a serious image problem. MySugr is all about injecting some appeal and fun into diabetes, while producing a product (a kickass app) that people love and use because the functionality is brilliant.

Funking it up a little is a good thing. And this little pump is a step in the right direction!

No – I am not funded by Kaleido. No I did not receive any product. Yes, I did ask when it is coming to the Australian market. There is no official word on that yet, but we are certainly in their plan. The launch markets will be in Europe.

EASD 2015 – on my mind

September 15, 2015 in Conferences, Devices, Diabetes, DOC | 1 comment

It’s day two of the 2015 EASD conference in Stockholm. Sunday and Monday showcased some impressive symposia – including industry announcements – and yesterday the official opening ceremony started the conference proper.

We arrived in Stockholm around midday on Sunday after 26 hours in transit, so the afternoon was spent settling into our hotel which, bizarrely, has only round windows giving the odd sense that we are in a boat. Seventeen floors above ground level. In the sky. Weird, but gives an incredible view of each morning’s sunrise!

In keeping with EASD tradition, the conference is very science-y. There is little about the psychosocial aspects of diabetes and minimal input from people with diabetes. I have developed a twitch in my right eye because I keep hearing the word ‘diabetic’ and as much as I try to tell myself to get over it, it just doesn’t sit right with me coming out of the mouths of clinicians.

There is much mention of the ‘patient perspective’ and on Monday there was an entire symposium dedicated to it. Unfortunately, there wasn’t an actual ‘patient’ on the panel, which surely is weird. It is, right?

But despite the limited presence of PWD in the official programme, there are a lot of satellite events and activities taking place.

Yesterday was #DOCDAY, an event organised by Bastian Haulk from he German online community. He had hired a space in downtown Stockholm and invited bloggers, advocates and others with diabetes to come along, network, chat, and talk about what we are all doing in our different communities and the larger DOC. Bastian asked me to say a few words at the introduction and I highlighted for me what is the most important thing when we are talking about the DOC: No one owns this community. No one is more important or more relevant or more powerful.

Sure, some of us are very fortunate that we get to actually meet IRL and attend conferences, but we do it as part of our jobs – whether it be like me (through my work at a diabetes organisation mixed with my online work) or through independent consulting or other work.

But regardless if you are in the room or following along on Twitter, everyone has the same right to be here and to be part of it.

Two separate blogger summits have been organised by industry – I will be attending the Johnson and Johnson DOC Exchange event tomorrow and Friday. These activities showcase just how smooth PWD and industry can work together – disclaimers and all that sort of stuff out in full view!

The Exhibition Hall here is, as expected, huge. Whilst the usual suspects are all here in force, there are also a few new faces on the scene. The Keleido pump is something to watch – if, for no other reason, than the gorgeous colour spectrum! More in coming days!

While we’re talking new stuff, check out this gorgeous range of clothing from Anna PS (Scandinavia). Anna is delightful and started this company to address a gap in the market, producing high quality t-shirts, bathers, underwear and more to accommodate diabetes devices such as pumps, CGM receivers, pens etc. The clothing is of the most beautiful designs – the fabrics are divine. (And yes, she ships to Australia!)

There is a lot on show and a lot being presented and as in previous years, I have found this conference a lot more daunting than other meetings like ADA or our own ADS-ADEA. but there is plenty to write about and share. More in coming days.

‘I could tell straight away…’

September 11, 2015 in Hypo, Lows | Leave a comment

The noise in the café was overwhelming, yet just a few minutes earlier it was quiet. I couldn’t hear Aaron who was sitting next to me or my friend, S, who was sitting opposite me. Their words were foggy and unclear. Something clattered to the ground and the noise startled me. I threw back what was left of my coffee.

All of a sudden, one of the café staff was standing next to me, leaning over saying something.

‘What?’ I said, sounding irritated. I stopped myself, realising what was going on. ‘Sorry. My blood sugar is low. I need… Do you have…? Could I have…?’

She looked at me and stood up straight. ‘What can I get you? Juice? Sugar?’

‘Um…yes.’ I said

I heard her call into the kitchen, ‘I’m putting an orange juice through the register, but I need it now. Like right now.’

Within a minute, she had gone into the kitchen and gently placed a large freshly-squeezed orange juice on the table. ‘I’ll be back in a sec.’

And she was. As soon as I had downed the juice. ‘Are you okay? Can I get you something else. I know. I have some cookies.’ And she walked to the counter

The room was still foggy and my brain felt like it was wrapped in cotton wool. Aaron and S were talking to each other, but keeping an eye on me at the same time.

My new friend was back with a small plate of the cafe’s delicious peanut butter choc chip cookies that come on the side of all coffees.

I smiled at her. ‘Thank you. Really. Thanks.’ She brushed my gratitude aside.

We finished up. ‘Feeling okay?’ asked Aaron. I nodded, and stood up, making my way to the counter to pay.

‘Thanks again,’ I said to the waitress.

‘Do you have diabetes?’ she asked.

‘Yes. How did you know?’

‘My dad has diabetes. I could tell straight away. You had the same look he does when he needs sugar. But anyone would know, right.’

‘Ah, no. Most people wouldn’t have a clue. Thanks so much for being so great. I really appreciate it.’

I paid the bill and left a decent tip in the tip jar and we walked out of the cafe. ‘Put it on your blog,’ said my friend. ‘Oh, I will,’ I said. ‘I will.’

Stockholm next week. Here’s some ABBA.

So many messages

September 10, 2015 in Awareness, Health, Mental health, Real life, Social media | Leave a comment

There are only 52 weeks a year. There are only 365 days a year.

There are so many important and worthwhile health messages that need awareness and funding and attention. And this week, there is a lot going on.

As I wrote yesterday, it’s Women’s Health Week. (#womenshealthweek)

It is also Body Image and Eating Disorders Awareness Week where the aim is to raise awareness of eating disorders while also promoting positive body confidence. (#BIEDAW) Tying in with this, the Butterfly Foundation has also named the week Love Your Body Week. (#loveyourbodyweek)

And today is R U OK? Day – a day where we are encouraged to check in with our friends and family and ask the questions ‘Are you okay?’ The idea is about finding ways to communicate effectively and comfortably and check how people are. Have a look at the national awareness campaign, ‘Thanks for Asking’. (#RUOK)

But wait; there’s more.

It is also World Suicide Prevention Day. The theme for this year is ‘Preventing Suicide: Reaching Out and Saving Lives’. More here. (#WSPD)

All of these initiatives are important. Each one needs attention. Mental illness and mental health run through all of these health weeks, and we know that talking about mental illness helps reduce stigma and, hopefully, have more people knowing where to seek help.

Keeping up with what is going on with all the different awareness weeks and days is almost a full time job! It’s easy to feel overwhelmed by the barrage of health messaging and the calls to action.

I would receive dozens of emails each week from different health organisations highlighting why their week is important, why their condition or their messaging needs attention. I rarely disagree. Reputable health organisations spend a great deal of time and effort development their messaging. There is considerable attention given to campaign materials and promotional activities. Each and every ‘cause’ is worthwhile and I want to be involved in all of them.

But it’s just not possible to do it all.

Today, however, I am watching this from NCD Free which has been released just in time for World Suicide Prevention Day, which looks at the link between chronic kidney disease, alcohol use and suicide in rural Sri Lanka.

Plus, I am checking in with people and asking how they are doing – with the very conscious understanding that R U OK? day is not a tick box event that once it’s over means I don’t need to check in on people on other days.

And I am reading the Thursday messaging from Jean Hailes for Women’s Health which today focuses on way to manage our health – who and what to ask.

I am also considering body image – my body image – and how I’ve recently been feeling about myself and how I look.

And on top of all that, I am keeping up with everything on social media and hashtagging (not a word!) the hell out of it all.

Next week, it will start again – with something else. Something equally important; something equally needing attention. And it happens all alongside the health condition that I manage each and every day. Because even if it isn’t on the calendar, every day to me is diabetes day and each week is diabetes week.

Pink Elephants

September 9, 2015 in Health, Wellbeing | Leave a comment

This week is Jean Hailes for Women’s Health Women’s Health Week. (Yes, there’s a lot of women and health in that sentence, but given it’s the focus of the week, let’s work with it.)

I quite love the theme of the week which is Let’s Talk. The idea is that we get rid of the elephants in the room and talk about health issues that we sometimes find tough to discuss. It’s a great concept! Having people opening up – or at least being able to access information – about health issues that are sometimes not discussed is really important. Plus, there are gorgeous pink elephants all over the promotional materials and that can only be considered a good thing!

Now clearly, I don’t have an issue speaking about health issues. I very openly talk about my experiences living with diabetes. I have willingly and candidly spoken about fertility issues and miscarriage. I have also discussed the body image concerns that I have lived with for most of my life. Mental health is frequently discussed on my blog – usually in relation to diabetes.

But while I am happy to bang on about any health concern that I may be dealing with, that isn’t the case for everyone. That’s why this week is an important one.

And it is why we need people who are happy to share their stories out there. We need people to be discussing the things that are a little ‘underground’ or that make people squirm a little.

pinkelephant Each day of the week has had a different focus. On Monday, the results of an online survey were released. The survey combined responses from 3,300 women aged between 18 and 87 years, and healthcare professionals including nurses, GPs and HCPs.

Yesterday, the attention was directed towards natural therapies, looking at the safety and effectiveness of natural medications and treatments. There was great advice about questions to ask (yourself and your HCPs) before taking any natural therapies.

Today, it’s all about what is not being talked about. Starting with the difficult topic of domestic violence, the website provides advice about the issue and lists placed to go to for help. While there has been quite a bit of attention in the media given to domestic violence this year, the statistics are horrendous and we need to be doing more.

Also on the agenda for today is mental health and there are links to some valuable information about depression, anxiety and emotional health.

The rest of the week is about managing our health and healthy living.

I understand that not everyone is happy to share their story. And that is fine. But even those who prefer to stay silent and keep any health concerns to themselves still may look for information and advice. And shining a light on some of the less talked about health problems faced by Australian women with a bright and bold campaign does just that.

So. Let’s talk!

Off we go

September 7, 2015 in Conferences, Travel | 1 comment

This Saturday, I will be heading to the European Association for the Study of Diabetes (EASD) annual meeting – and the Euro Bloggers Summit.

Somewhat serendipitously, Saturday is also Diabetes Victoria’s first ever Travel Well with Diabetes event. Hop over to the Diabetes Victoria blog to read all about it.

In the meantime, I’ll be spending the rest of my week ignoring the fact that I’ve left everything to the last minute (as usual) and haven’t even thought about getting my diabetes stuff organised. I’ll also be ignoring the kidlet’s repeated protestations that her parents are abandoning her and swanning around Europe without her for the fourth time. Diabetes guilt and mother guilt – I need a holiday!

EASD 2015

Call me Doctor

September 4, 2015 in Diabetes, Social media | 1 comment

Actually, no don’t.

In a weird, weird situation a couple of weeks ago, I found myself at the end of the phone – my phone – and on the other end was someone who had called to make an appointment with me. They had diabetes. And apparently, I was going to help them ‘fix’ their diabetes and be their new doctor.

Now, there were a few flaws in this premise. Firstly, and perhaps most importantly, I am not a doctor. I am not a health professional of any kind. I do not feel this to be a deficiency in any way, because I am not employed as such. Secondly, I cannot help anyone fix their diabetes because, well, a) diabetes can’t be ‘fixed’ and b) if it could, I’d be starting with my own.

It took me five minutes to convince the person on the other end of the line that I was not who or what they were looking for (seriously, the ‘Huh? You want me to do what?’ which was pretty much the first sentence I uttered should have given away that I was not the sharpest tool in the shed and definitely not the person to be looking towards for diabetes expertise).

When the person didn’t believe that I couldn’t help them ‘fix’ their diabetes, I took a different tact and offered my services in things I could help them with. I offered cupcake recipes, book recommendations, ways to get out of exercising (expert level here!), my opinion on the best film of all time, dinner suggestions.

Once I had convinced the person that I really was not a doctor (but may be able to help them connect with one) I asked why they thought I was.

‘I see you on Twitter. You seem to know what you are talking about.’

I was reminded again of just how easy it is for people to take on the moniker of ‘expert’ or ‘guru’.

My Twitter feed is, admittedly, predominantly diabetes-related. I link to my blog or live tweet conferences. There are links to journal articles and diabetes events. But none of these suggest that I have anything offer other than the ability to include a link and a brief description of what is at the other end if you click.

But there are also photos of food and recipes and Harry Potter references and links to gigs and movies and other random things. Things that under no circumstances do not give the illusion of me being a diabetes expert.

My new friend and I chatted for a while longer and I mentioned a few things they might want to look into – support groups in the area, online groups and some upcoming events. I let them know they could call me again (for a chat, cupcake recipes, book recommendations etc…anything as long as not medical advice).

I finished the call and opened Twitter, skimming through things I had posted recently. Diabetes expert? Nope. Not at all.