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I’m back from one of the busiest and most enjoyable conferences I have ever attended. The International Diabetes Federation’s World Diabetes Congress in Vancouver was a frantic few days, preceded by the Parliamentarians for Diabetes Global Network Forum. Before I get to the nitty gritty of the week, here are some pictures. They tell more than a thousand words and give you an idea of just some of the week. Let your fingers do the scrolling!
Obligatory ‘Outside the conference centre’ photo. I have quite a collection!
Banting. The man to whom I owe my life.
Spending time with inspirational women is one of the perks of this job. Sue Alberti at the joint PDSG and Young Leaders lunch.
My talk abstract.
And getting ready to take the stage…
And actually on the stage!
Slightly blurry, unfortunately, but this great slide was from Professor Jane Speight (ACBRD) in one of her excellent presentations about hypoglycaemia.
Because I’m a smart arse. (Also – ridiculous policy!)
I also had the chance to catch up with friends and other diabetes advocates and activists from around the globe.
These girls! Annie (@understudypancreas) and Kerri (@sixuntilme) make being away from my family just that little bit easier.
Outgoing president of the YLD program, Keegan Hall. He’s my partner in sarcasm!
Annie giving an incredibly eloquent and moving presentation about diabetes in her family, sharing her daughter’s story.
Cherise talking about DSMA and the amazing story that is #Simonpalooza. (Google it!)
Fun folks.
Bastian from #DeDEC speaking about a brilliant initiative he ran in Germany on WDD this year.
Dinner on the last night with Fredrik and Kyle from mySugr, and Bastian from DEDOC
Lots of things to write about in the coming days so stay tuned. It was a terrific conference. But I am so happy to be home!
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.
My interactions with the DOC have been nothing other than supportive*. I am not sure if it is because I am particularly fortunate or if it is that my opinions and thoughts are so vanilla that no one has ever thought to take objection to them.
I have enjoyed some robust discussion following topics I’ve written about, but I have always found respect directed towards me and hope that I have always displayed respect and kindness in spades. When I have opened up and exposed some pretty raw sentiments, I have felt enveloped in a blanket of love and support.
But having said all of that, there are times that interacting with the diabetes online community is exhausting and I simply feel the need to step away. I get burnt out and tired and need a break. I’d like to point out that it is never personal – my fatigue is never because of a single person.
I also find there to be some symmetry in my need to shrink away online with wanting to go to ground in real life. Sometimes, I don’t want to be ‘out there’. And that is okay.
What I find most draining when it comes to social media is the OUTRAGE (all caps; has to be all caps!). It happens frequently and certainly not exclusively in the diabetes sphere.
OUTRAGE is a modern-day ailment. At the end of last year, online magazine, Slate, compiled this amusing/terrifying/telling/ridiculous (choose your own adjective) piece which told us what we were OUTRAGED about EVERY.SINGLE.DAY of 2014. (August 28 was a watershed day – it was the day that there was OUTRAGE when it was announced that Hello Kitty is not, in fact, a cat.)
In the diabetes world, there is OUTRAGE a lot. In fact, in the first week of January, I wrote this post because we had already kicked off the year with some diabetes outrage thanks to Jamie Oliver and an inflatable Coke can.
I have admit, I am not immune to it. I wrote a post about the whole Crossfit palaver, but it actually was more a commentary on the stupid way that Crossfit dealt with it rather than taking offense to what was said.
The outrage is constant and tiring and often unfortunately results in sad and sorry diabetes-type in-fighting. It gets ugly and instead of building each other up – which is something that the DOC often does so well – we diminish each other and take each other down.
After each of these episodes, the fury and frenzied rage and anger and hate (because there is hate in there and it is terrible), I want to curl up under the doona and step right away from the noise. I reconsider if I really want to be part of a community that turns on each other so quickly at times, adding to the stigma that usually comes from outside our circle.
So when that happens, I spend a couple of days being a little less ‘out there’ and a little more time offline. I give myself space and air and before long, I remember what I get from the community. Support.
And I need that support. I need it for the days that diabetes is too big and scary. I need it for the days that I want to celebrate something about diabetes. I need it for the humour and the sustenance. But mostly, I need it because it makes me feel like I am something bigger than my little diabetes life.
*(There is only one incident where someone took objection to my post about diabetes burnout following a miscarriage, but as that person has made it policy to systematically work through the DOC, insulting as many people as possible, I am completely ignoring and discounting her rude, abusive, disrespectful attack in my DOC experiences. Block, ignore, delete in whichever order you choose, are powerful tools. I have learnt to use them!)
‘Storytelling is the essential human activity. The harder the situation, the more essential it is.’
Tim O’Brien
This time last week, I was sitting on a plane, flying back from Friends for Life. As we’d booked this trip at the last possible moment, I was not travelling the long LA – Melbourne leg with Aaron and the kidlet. We hadn’t managed to all get on the same flight and my trip (booked though work) and theirs didn’t coincide.
So I had a lot of thinking time and kept trying to put into words what the Friends for Life (FFL) experience was for me. I found myself tearing up quite a bit, and kept touching the green bracelet that was wound around my right wrist. It’s still there, and I find myself glancing at it when I am sitting in meetings, or as my fingers fly across the keyboard typing these words.
I had an idea of what I was going to experience at FFL. I have spent enough time with FFL alumni and read a lot about it to have formed an impression about what the week would hold.
I knew what to expect.
Excect I absolutely didn’t. I had no idea.
I expected it to be all touchy-feely. I expected lots of hugs. I expected a quiet understanding – of all and from all who were there. I expected to feel included and part of something and welcomed.
And those expectations were all met. Ten fold.
But what I didn’t expect was the sheer, overwhelming emotion of the conference.
And I didn’t expect the science.
Make no mistake. Friends for Life is a diabetes conference in the truest sense of the word. It is not a support group meeting – of course there is support, but it is much more than that – it is a scientific meeting with the focus very clearly on providing up-to-date, evidence-based, important information to people living with diabetes. It’s not dumbed-down – absolutely not! The information presented at FFL would not be out of place at the ADA scientific meeting I’d attended the month prior, or ADS-ADEA conference I am attending next month.
I didn’t expect an exhibition hall that was bigger than what I know I’ll see at the annual ADS-ADEA conference.
I didn’t expect that there would be announcements like the one Ed Damiano made about his work on the (brilliantly named, iLET) bionic pancreas. And when it was made, I didn’t expect the outpouring of emotion, of gratitude, of understanding, of hope.
And running alongside it – as part of it – are the sessions where you sit, and breathe and cry and nod and share your story. Or say nothing and just fill up.
This is not a cult-like gathering of the pancreatically-challenged and our support people. There is no sitting around feeling sorry for ourselves. Equally, it’s not a pep rally where we marched to the beat of the same drum, patting ourselves in the back. Every person at that conference has their own story and while there certainly are similarities, there are also differences.
Friends for Life challenged me. It made me feel uncomfortable at times. The discussions were not all easy and self-affirming. There were topics that I don’t regularly talk about, instead hiding them away in a chamber of my mind that I manage to keep locked away most of the time. I sat quietly in talks about how diabetes affects those around me. I struggled to share my story at times. But I did, often with hesitation, because talking about how diabetes impacts on Aaron and our beautiful girl hurts me in ways that make me feel like I am falling to pieces inside.
I didn’t walk out of all of those challenging sessions feeling great. But I felt validated and I felt less alone. And I understood better that it was okay to speak about those confronting issues, even if what I am feeling isn’t wonderful. I took away from those sessions the ideas and strategies other use and I feel better equipped to manage some of the more difficult aspects of living with diabetes in the family.
I attended FFL as a guest of Children with Diabetes (CWD). For years, I have been begging CWD President, Jeff Hitchcock to bring this event to Australia and while I did that with the idea that it would be great for people affected by diabetes to have the experience, I had no idea just what that experience would mean. I still am not fully cognisant of what the experience has given me.
My expectations weren’t met at Friends for Life. They were exceeded. And I hope that we can find a way to bring it to Australia so that as many people as possible can become part of the FFL family.
A huge thank you to Jeff Hitchcock and the CWD Board for covering my costs to attend Friends for Life 2015.
Some dot point facts:
- It’s National Diabetes Week here in the wonderful land of Oz.
- It’s about all types of diabetes. Every. Single. Last. Type.
- 280 people are diagnosed with diabetes each and every single day in Australia.
- All types of diabetes sucks.
- No one asks to get diabetes.
And now some dot point observations:
- There is no merit in changing the name of the different types of diabetes. None at all.
- I am yet to hear a decent argument about why we should change the name of type 1 diabetes to something else.
- Having said that, if you can incorporate the word ‘unicorn’ into a new name for type 1 diabetes, I might get on board. Although probably not. I just want a unicorn.
- Many health conditions have ‘types’ and ‘sub-types’. There are five different types of lupus. Can you name them? Can you tell me how they are different? If someone said they have lupus, would you be able to engage in a meaningful discussion about their ‘type’ of lupus? I know I certainly couldn’t – and my mum has lupus.
- Quite frankly, I don’t care what type of diabetes the 280 people diagnosed each day have. It is all diabetes and it is all a condition that is significantly underfunded, a condition which carries horrendous stigma and a condition which is crap to live with.
- What I do care about is that there is increased awareness about all types of diabetes. I care that more research dollars are thrown at diabetes. I care that more healthcare professionals know about diabetes and about diagnosing ALL types, quickly. I care that people living with all types of diabetes have access to healthcare and devices and medications and support.
- The whinging and whining and bitching and moaning that is coming from some circles is tedious. Especially considering the whinging and whining and bitching and moaning is being done mostly amongst like-minded people so nothing is actually being achieved.
And finally, a comment:
Last week, I sat in on MasterLab, a two day advocacy workshop run by the wonderful Diabetes Hands Foundation. In the room were some of the most successful, vocal, passionate, smart diabetes advocates in the world. These are people who take their cause to government and make changes for people living with diabetes, who raise awareness about living with diabetes and raise funds to help support people living with diabetes. They do it without fanfare and without accolades. They just do it.
How many times do you think there was a discussion about the different types of diabetes? How many times do you think parents of kids with diabetes in the room tried to say how much tougher they have it than others with diabetes? Or people with type 1 diabetes complaining that no one understands why it is more difficult than type 2? How many times do you think that type 2 diabetes was demonised?
Not once.
Because those smart people in the room – the people who are respected and listened to in the wider diabetes space – know that there is no point in working against each other.
But you know what? I’ve been saying this for some time and there are people far more eloquent than I on the same page.
This is from (US-based) Diabetes Patient Advocacy Coalition (DPAC):
How will you share a unified patient voice for a disease as diverse as diabetes? (Type 1 vs. type 2, parent vs. child, etc.?)
DPAC has committed to the idea that diabetes doesn’t discriminate. We have no interest in promoting cross-type discord. There are benefits of numbers, passion, and reach in various parts of the diabetes community. We all benefit from all those skills. If an individual has an interest in raising their voice to help people with diabetes get access to safe and quality products and services in the United States, then we welcome them with open arms.
Divided we can be ignored. Together we make a difference.
And in her wrap-up of last week’s MasterLab, my friend Alanna wrote this brilliant blog post. And this closing paragraph:
We as a community need to stop putting our walls up. Nobody, not you, not me, not the president of the USA can advocate for change in diabetes care and treatment until we educate effectively. Defending your “type” and throwing the other under the bus is unacceptable behaviour, and is counter productive to creating positive change and a world without the financial, physical and emotional burden of diabetes.
I am calling on all of my readers, old and new to commit to never trying to defend your type, and only defending the human beings who are living with mal-functioning pancreases so we can really get to work.
Another friend, Kerri Sparling wrote this last year, speaking about the wonderful Walk with D initiative.
The diseases are different in their origin but so similar in how they map out physically, and more importantly, emotionally, and I wish I had known that earlier. I wish I had been more supportive of my type 2 peers. I wish I had known how they felt.
I have lost friends because of my stand on this issue. I have had arguments with people who think that I should be using this blog and my voice to advocate for changing the name of type 1 diabetes or rallying against people not understanding the differences between the types of diabetes. I have had people challenge me and ask me what I stand for – what my diabetes advocacy is all about.
The answer is simple. I am against diabetes stigma. I am against building up one type of diabetes at the expense of another. I am for access to healthcare and devices and medications for all people with diabetes. I am for a unified community. I am for the wonderful #OzDOC community which is a beacon in Australia of unity within the diabetes world, and congratulate Kim Henshaw in promoting an inclusive, supportive and downright fun platform for all people with diabetes to connect.
It doesn’t mean we have to agree on everything or all be focusing on the same issues. It just means that we work together and are kind to each other. #TypeAll
Gorgeous new James Taylor CD made its way into our home yesterday. Angels of Fenway is a favourite given that I was there just a few weeks ago.
One afternoon whilst in Boston, I left the confines of the Convention Centre so I could attend a DOC event. It was hosted by J&J and the event started with a two hour walking tour of Boston. This was a brilliant idea on so many levels, not least because it meant that I would actually get to see some of beautiful Boston and hear about its rich history.
Water taxi to work.
Boston is really a stunning city. Between the glimmering harbour, stunning architecture and cobble-lined streets, it’s a very pretty city to walk around. (Because, believe me, you don’t want to drive around it. The traffic is bloody horrendous!)
Our walking tour followed part of the Freedom Trail (read about that here). We made four of the sixteen stops on the walk. (Which only means that I now need to return to Boston at some point and do the whole trail!)
Some of the sights on our walking tour of Boston.
So, what do you really hate about your diabetes? was one of the questions. Not necessarily an easy question, but one that I jumped in to answer first. Because actually, for me, it has an easy answer. As much as I write about the crappy hypos, and difficult days with BGL swings resembling some sort of Himalayan mountain range, and the emotional side of diabetes, the thing I hate most about diabetes is never really far from the front of my mind.
I hate that it’s not just MY diabetes. I wish it were. But it’s not. I hate that it is also my family’s and friends’ diabetes. I hate that they know about diabetes and that they have to sometimes be a part of it – taking an active role in helping me. They don’t get a choice. And while they would never say this – and they probably don’t even feel it – I feel like I am a burden. I hate that my diabetes is also my husband’s and daughter’s and mum’s and dad’s and sister’s and in-laws’ and friends’.
I stopped speaking. Some of the others in our group were nodding. I can talk about diabetes a lot without getting too emotional. I can be pragmatic and direct. These are the facts – this is what it’s like. But when I talk about my family, I do get emotional.
I felt my eyes starting to sting and was glad that I had a pair of glasses hiding my tears. Not that it would have mattered had I openly cried. As I said, I was amongst friends and the only response would have been a huge hug. Possibly from this bloke:
The wonderful Scott Johnson.
Discussions about diabetes can be tough. But when you have kind, generous and understanding people around when having these discussions, it makes things just a little easier.
Thanks to the team at J&J who put on the walking tour and drinks afterwards for members of the DOC.
I am almost over my jet lag. I know: I’ve been back for two weeks now and I am still dealing with the effects of a messed up body clock. I expect that by next weekend, it will all be good and I’ll be fine again.
Which is terrific. Because next Sunday, I’ll be getting on another long haul flight and going back to the U.S. so I can go to Friends for Life (FFL).
I can’t tell you how excited I am about this. (The going to FFL part; not the long haul flight/more jet lag/perpetually messed up body clock part.)
I‘m more than thrilled to be given the opportunity to attend FFL. I have spoken to so many people who have gone and I get the same words from everyone: ‘It’s life-changing’, they all say. I have met Jeff Hitchcock from Children with Diabetes (who runs FFL) a number of times, and each time, I inevitably say ‘Jeff – how do we get this to Australia?’ Part of the reason I’m going next week is to see how indeed we could make that happen!
Because here in the wonderful land of Oz, we don’t have anything like FFL. Of course, we have camps for kids with diabetes and, in some states, family camps. In fact, just this weekend (and next weekend too), Diabetes Victoria will be hosting our annual family camps for kids with diabetes and one of their parents.
The difference with FFL is that is for the whole family – everyone! And it’s not just for kids with diabetes. Panreatically-challenged adults can go and take their family along too (including my little clan, which is making me explode with excitement!). This means that at FFL, everyone is considered – siblings, parents, partners, kids of parents with diabetes, even grandparents!
This completely subscribes to the It takes a Village idea. And the longer I live with diabetes, the more people I speak with who are affected by diabetes, the more I realise this is a truism like no other.
I am so happy that my family is coming along too. When it was decided that I should attend this year’s FFL, I knew there was no way that I could go without them. I was crazy if I thought the kidlet (and Aaron!) would ever forgive me for going to Disney World alone – even if it was for work.
So, I’m looking forward to joining the Friends for Life village next week, and adding my little tribe to it. It will even be worth the jet lag that will, undoubtedly ensue!
Baby, it’s cold outside. It really is. I am shivering my way through most mornings, cursing the cold and complaining about how far away Summer is. Which is all really weird because I think the coldest it’s been is about 7 degrees (Celsius), and a mere few months ago, I was delighted and delighting at the New York snow. I think that’s what I need. Snow in Melbourne. Snow makes the cold worth it.
Anyway, sit somewhere warm and have a read at what I have been checking out lately.
She quits helmets
I’ve made no secret of the fact that I think Sarah Wilson is a fool. She has done nothing to alter that opinion with her rant and rage against mandatory helmets for cyclists. She wrote this at the end of last year and it has resurfaced, once again showing how irresponsible and downright stupid she is.
If I had a superpower, it would not be flying or invisibility or a magic unicorn. No. It would be to mute people who are dangerous; people with D-grade celebratory status with a following who sprout harmful rhetoric. Sarah Wilson would possibly be first on my list.
beyondblue
Yesterday, this media release from beyondblue had me cheering. Raising awareness about men’s health – in particular men’s mental health – is a tough gig and beyondblue are doing a damn fine job trying to cut through.
Inside Out
When I saw the preview for the new Pixar film, Inside Out, I was so excited. What a gentle, fun, and enjoyable way to talk about mental health with kids. I couldn’t wait to see it. I still can’t. Aaron took the kidlet and one of her friends to see it while I was in the US and they all thought it was terrific. And it has sprouted some really interesting discussion about the topic.
I love this article which talks about the importance of having a strong female character as the protagonist of the film who is not a princess.
Jenna from the Block
A few years ago, Jenna and Josh were contestants on the Block. Josh was diagnosed with type 1 diabetes a couple of years ago, and this moving story from his wife, Jenna, is doing the interweb rounds here at the moment. Thanks for raising awareness of diabetes, guys!
Up your nose
Glucagon injections are not fun. They are not fun for the person who is jabbed (the jabbee?)– mostly because it means that they are having a nasty hypo that warrants being jabbed – and they are not fun for the person doing the jabbing (the jabber?).
Under what is usually an incredibly stressful situation, the ‘jabber’ has to open the little orange box, draw up things into a syringe, shoot it out again, mix it up and then inject it.
Not. Fun.
So, it is with great interest that I have been reading about the trials of inhalable glucagon. Read about it here.
Friends like this
My friend Alecia is awesome. She is uber-talented (her jewellery designs are stunning and her lighting designs a marvel) and is so much fun to hang out with – even if she makes me drink things that taste like orange bathroom cleaner.
We hung out recently in NYC, where she took me to a gorgeous place for dinner and we ate the best Brussel sprouts ever. And then I took her to hear some jazz where she made guitarist Mike Stern kiss me three hundred times so she could get the perfect photo. I didn’t complain. Neither did he, actually.
She is also slightly crazy. But she is crazy for a cause which, I guess, makes it kind of okay. Next month, she is going to be riding 100 miles on a bike. In our language that’s 161 kms. In whatever language, that’s a long way.
If you can, throw her some coin. All money raised is going towards finding a cure for diabetes. Which she has had for 36 years, and since 2001, has raised over USD$350,000 for a cure for type 1 diabetes. I did mention she’s awesome right?
Music and words
Most weeks, I post a link to music I have been listening to. This is fun. And embarrassing at times. But I also think that I should start to post links to some of my favourite JK Rowling quotes because the number of times she beautifully and succinctly manages to say something that I have been trying to bash out is startling.
For all the blog posts and talks I’ve ever given on the importance of language, I could have simply said this.
Remedy injury. Always.
Gallery
One of the best films ever is the Peter Sellers’ classic The Party. A couple of years ago, we bought our first ever Josh Agle (known as SHAG) print which is a tribute to this fabulous film.
It was the first in The Party series. Somehow, we completely missed the release of the second print (and now can’t find one anywhere!), but a few weeks ago, when visiting Outré Gallery, we saw and bought the third.
Last night, after a couple of hours of lining things up, measuring things, banging hooks into walls (very satisfying), we finally have our SHAG gallery done.
It looks spectacular and this photo absolutely doesn’t do it justice – mainly because it was really difficult to get the whole wall in one photo. Those larger photos in the middle are each about 150cms wide. Nonetheless, here it is! And we can’t stop looking at them!
Drink Nutella
I mentioned it’s cold, right? Well, here is a nice way to warm you up. Nutella hot chocolate. Just because.
Diabetogenic 