You are currently browsing the category archive for the ‘Social media’ category.

‘Grumps? Grumps? When are you writing for me?’

Last year, The Grumpy Pumper wrote a couple of posts for me in what was going to be semi-regular series called What Would Grumpy Do? Actually, the idea that it was going to be a semi-regular thing was news to Grumps, and because he doesn’t like to be told what to do, it’s been over a year between posts. 

Earlier in the month we were in Abu Dhabi at #IDF2017 together, and every second thing I said to him was a variation of ‘When are you writing for me again? Grumps? Grumps? Grumps? Hey, write something. Now! Grumps?’ As it turns out, four days of me asking the same thing yields results. Who knew?

So here’s Grumps’ recent diabetes complications story. and his efforts to get people talking about complications to reduce stigma.

Off you go, Sir Grump-a-lot…

____________________________________________________

‘I’m afraid you have a diabetic complication Mr Pumper.’

(I’ve had the language matters talk, don’t panic)

How would you feel if you heard this? What would you do?

Well, at that point in time, I asked myself: What Would Grumpy Do?

To set the scene…

I had a bloody great hole in my foot.

I was at the podiatrist.

So, let’s face it, I did not fall off the chair in shock.

The conversation went something like this:

Grumps: What kind of complication? You can tell me straight. It’s my foot, right?

(Cue eye rolling by podiatrist. I don’t blame her. Dealing with me is a challenge at the best of times.)

Podiatrist: Yes. It’s an ulcer.

Grumps: Caused by the blister I told you about that burst, healed over but must have had some crap in the wound?

Podiatrist: Yes, that’s it.

Grumps: So it’s caused by my diabetes then?

Podiatrist: Oh no, not the blister, but your neuropathy means it will take longer to heal.

Grumps: So that big hole in my foot isn’t a complication of my diabetes; it’s complicated by my diabetes?

Podiatrist: Well. I guess so…

Me being me, I don’t care what it’s called, nor how I’m told, because if I’m totally honest it doesn’t bother me. Not much does. I’ll take whatever comes, deal with it and move on.

But I wanted to make a point. Things can be viewed very differently depending on who you are and how you feel about things. And how you feel about things can depend on how things are worded – that can massively influence things.

Anyway, to cut a short story long, a precautionary X-ray and a consultant later it was confirmed that there was no bone infection, which was good. It also showed that about a year ago I had broken two bones at the top of my foot and also smashed the joint in one of my toes – fuck knows how. (I remember a lot of swelling in the foot and bruising.)

Instead of healing, the bone had degenerated and gone ‘chalky’. Over time that hardened and went back to solid bone (as I understand it). So the toe joint isn’t a joint now, and the foot is slightly warped (just like my sense of humour). The Charcot (the chalky thing) is no longer active, but I am at risk of it happening again if I get another trauma to the foot.

All of which is good!

Why the hell would I think any of that was good?

The hole in my foot uncovered all the other stuff, so to be honest, I’m glad I got it. If I hadn’t, I would still not know. The Charcot isn’t active so there is nothing that needs to be fixed. I now know that if I get similar symptoms, or become aware of any trauma, I need to get it looked at ASAP. And I know the route to make sure that happens.

So, all good in my book.

I went home and did what any self-respecting Grumps would do: I waited until it was dinner time in the UK and then posted a gross picture of my foot for all to see. I described the issue and raised the subject of my complications.

This sparked a very good online discussion about compilations with other PWD talking about theirs and others seeing that they are not the only one with them. And there is no shame in having them. Sharing experiences and taking comfort from others; for me, that’s what peer support is about.

We are all in the same boat. It’s just that the boat is full of holes. If we try to bail out the incoming water on our own, at some point we will drown. It we help each other; we can keep our heads above the water.

I am not ashamed about my complications. I never will be!

I will Grumpily tell everyone that wants to listen, and post disgusting pics that pop up on your social media feeds just as you are about to tuck into your favourite meal.

I’m not sorry about this!

Complications are a hazard of what we have.

Not a failing of what we do.

#TalkAboutComplications

Live Long and Bolus

Grumps

Grumps’ snazzy new footwear.

Want more from The Grumpy Pumper? Check out his blog here. And follow him on Twitter here

Advertisements

I was thrilled and honoured to speak in the symposium at #IDF2017 all about peer support. I shared the program with Chris Aldred, better known to all as The Grumpy Pumper, and advocate Dr Phylissa Deroze (you can – and should – find her as @not_defeated on Twitter).

Speakers in the peer support symposium at #IDF2017

When we were putting together the program for the symposium, the idea was that it would offer an overview of what peer support can look like, beginning with how diabetes organisations and community health groups can facilitate and offer a variety of peer support options, and rounding up with the perspectives of people with diabetes who provide and participate in peer support.

I spoke about how diabetes organisations in Australia, through the NDSS, offer a suite of peer support choices, urging the audience to think beyond the usual face-to-face or, increasingly, online peer support group. Activities such as camps for children and adolescents with diabetes, information events, education sessions (such as DAFNE) are all avenues for peer support. Peer support need not only take the form of a group of people sitting in a (real or virtual) room talking about diabetes in a structured or unstructured way. It can happen just by putting people with diabetes in the same space.

I’d never met Phylissa before, but I quickly learnt she is the definition of the word determined. She spoke eloquently about her own type 2 diabetes diagnosis which was anything but ideal. Instead of feeling beaten and overcome by how she had been let down by the healthcare system, she turned to her peers, finding a group that not only helped her diabetes management, but also gave her confidence to live well with diabetes.

Phylissa now facilitates an in-person support group for women with diabetes in Al Ain in the UAE, and is a huge supporter of, and believer in, the power and importance of peer to peer engagement and support in diabetes management. You can read more about Phylissa’s work on her website here.

Grumps, in true Grumps style, gave a talk about how his approach to peer support is more organic and certainly not especially structured. Although involved in some more planned peer support, he believes the most effective way he can support others with diabetes is on an individual, more informal way. Kind of like this:

Click image to see tweet.

And as if putting into practise his talk at the Congress, last week he started a conversation on Twitter about his own recent experiences of being diagnosed with an ulcer in his foot opening the door for people to speak about diabetes complications.

Click image to see tweet.

The way we speak about diabetes-related complications is often flawed. The first we hear of them is around diagnosis and they are held over us as a threat of the bad things to come if we don’t do as we are told. They are also presented to us with the equation of: Well-managed-diabetes + doing-what-the-doctors-say = no complications.

Unfortunately, it’s not that easy.

From then on, complications are spoken of in hushed-voices or accusations. Blame is apportioned to those who develop them: obviously, they failed to take care of themselves.

And because of this, for many people, the diagnosis of a diabetes-related complication is accompanied by guilt, shame and feelings of failure when really, the response should be offers of support, the best care possible and links to others going through the same thing. Peer support.

Back to Grumps’ raising diabetes complications on Twitter. After sharing his own story, suggested that we should not be ashamed to talk about complications.

That was the catalyst others needed to begin volunteering their own stories of complications diagnoses. Suddenly, people were openly speaking about diabetes complications in a matter-of-fact, open way – almost as if speaking about the weather. Some offered heartfelt sympathies, others shared tips and tricks that help them. But the overall sentiments were those of support and camaraderie.

The recurring theme of the peer support symposium at the Congress was that we need to find others we can connect with in a safe space so we can speak about the things that matter to us. It’s not the role of any organisation or HCP to set the agenda – the agenda needs to be fluid and follow whatever people with diabetes need.

END NOTE

While we’re talking peer support, how great is it to see that the weekly OzDOC tweetchat is getting a reprise this week, with Bionic Wookiee, David Burren at the helm. Drop by if you are free at the usual time: Tuesday evening at 8.30pm (AEDT). I’ll be there!

Disclosure

I was the Deputy Lead for the Living with Diabetes Stream, and an invited speaker at the 2017 IDF Congress. The International Diabetes Federation covered my travel and accommodation costs and provided me with registration to attend the Congress.

Last week, I received an email informing me that the weekly #OzDOC tweet chats would be coming to a close. Obviously, I thought of it as a sad announcement, but what a fantastic five years and five months of weekly conversations and support!

It takes a lot of dedication to run a diabetes support group, and the regular tweet chat format of #OzDOC meant that it was a once-a-week commitment, requiring a roster of interesting and engaging topics, and someone to direct the conversation and make sure that there was someone welcoming anyone who wanted to participate each and every week.

It takes work, time and effort, and, in most cases, support groups are run by volunteers who already have jobs and busy lives and families. The support group administration and activities are run in someone’s own time.

But despite what it takes – the planning, the commitment and the energy – there has been someone there since the beginning, taking responsibility to make sure that the #OzDOC tweet chat bus kept going. And that person is Kim Henshaw.

Kim talking #OzDOC at last year’s #MayoInOz meeting.

When the #OzDOC tweet chats started, there were three of us involved: Kim, Simon and me. We took it in turns each week to moderate the chat, come up with the questions and run ideas by each other. But circumstances change, and first I, then Simon needed to step back from being part of the moderating team.

Kim stayed on and has been the one responsible for herding the #OzDOC kittens and creating a safe, fun, supportive, reassuring online space for people in the Australian diabetes community to come together on Twitter each week. With a team of moderators, the chats continued.

Kim’s commitment to #OzDOC could never be questioned. In the very first tweet chat, back in July 2012, she was sent to Twitter jail for tweeting and retweeting too many times in the hour! She wanted to share as widely as she could, acknowledge as many comments from others as possible and encourage conversation at every turn. Until she was cut off from Twitter:

Oops…

Kim never wavered from her pledge to build and support the community. I shared the power of #OzDOC every chance I had – any time I was speaking about diabetes peer support, #OzDOC got a mention; I’ve written about it here over and over and over again. And I defended online channels and Twitter as a support platform, using #OzDOC as an example of just how a community could be developed.

But times change, and with Kim stepping aside and no one else available to take on the coordination of the group, next week will be the final time that the @OzDiabetesOC account is used for the #OzDOC hour of power.

I wanted to say a huge thank you to everyone who has been involved in the OzDOC tweet chats for the last (almost) five and a half years. I have met some incredible people through the chats, made some wonderful friends and learnt so, so much.

And mostly, I wanted to say thank you to Kim for delicately, dedicatedly and devotedly running the group. What a wonderful thing you created, Kim. Well done! Enjoy your quiet Tuesday nights – you deserve it!

Last week, a recipe was posted on the Medtronic Australia Facebook page. The recipe was for a Chocolate Tim Tam Cake, which looked rather gooey and very chocolate-y.

I was looking for something to bake over the weekend, but decided that this cake wasn’t really the sort of baking I was up to, so I scrolled on, searching for the right recipe for my baking adventures.

But for some reason, I kept seeing the recipe appear in my FB feed, a couple of times because it had been posted in some of the LCHF groups I follow.

And then I did what I know I shouldn’t do. I looked at the comments, and down the rabbit whole of the very angry LCHF brigade I tumbled.

I am always very wary when it comes to dietary advice. I don’t follow the Australian Dietary Guidelines because I find the quantity of carbs recommended is just simply too difficult for my non-functioning pancreas. Or rather, for my (frequently barely-functioning) brain which has to act like my non-functioning pancreas. Also, I just don’t really want to have to bolus large quantities of insulin in one go. But that’s just me.

Equally, I don’t follow a paleo diet or I Quit Sugar or Dr Bernstein because anything that is so prescriptive is never going to work for me. Instead, I pick and choose what I know will work for me and, more importantly, what I can manage sustainably. I couldn’t really care less what other people with diabetes (or people without diabetes) eat, because I’m far too concerned with my own diabetes existence. And being obsessed with the @TrumpGoogles Insta account

In exactly the same way I would never accept a HCP who judged what people eat or the tools people choose to manage their diabetes, I don’t take too kindly to other PWD (or anyone, really) suggesting that people who prefer to eat in a certain way are ‘killing themselves’. This is what was happening in the case of the recipe posted by Medtronic.

You can read the comments yourself (the post is here), or you can just assume that they all had to do with the criminality of a company daring to post the recipe while suggesting that people with diabetes might want a piece of cake. And varying versions of ‘you might as well just kill yourself’.

I’m not bagging the LCHF movement and anyone who fully subscribes to it. But I am calling out the frequent aggressive and belligerent rhetoric of some LCHF folk. I’ve had more than enough disrespectful and rude comments sent my way anytime I write about food or share recipes. Despite that, I’m not for a minute suggesting that the way you are choosing to eat is harmful, in fact, I completely agree that eating LCHF is one way for some people to best manage their diabetes. I know a significant number of people of have changed to this way of eating and they have found the results to be incredibly positive.

I also know a significant number of people who simply haven’t found it to be the right thing for them. Some say they have found it unsustainable, others say they found it boring. Others say they are simply not interested because they found it too restrictive, or too expensive. And some say the results they saw simply didn’t warrant the effort they needed to put in.

I know that for me, exclusively following a LCHF diet doesn’t work because I just don’t do food restriction. I’ve never dieted in my life and I don’t do well with being told what I can and can’t eat. I also know that I can quite easily manage to limit my carbs to around 50 grams per day and that the results I have seen since doing that have been worth the effort for me. I also know that all carbs are not created equal and I try to be smart about what I choose to make up those 50g (or so).

Oh – and mostly I know that sometimes…sometimes, those 50 grams of carbs are going to be a doughnut. I’m okay with that. Doughnuts are delicious and bolus-worthy.

As I firmly and resolutely believe, everyone has the right to manage their diabetes in a way that works for them. And they have a right to do that without being bothered by others. Being told that what you are eating is ‘poisoning your body’, or being told that the devices you are using are toxic helps no one.

Oh, and the personal attacks are also totally unnecessary. The person who sent me an aggressive FB message after seeing this profile photo can just pull their head in. I ate a few bites of chocolate cake (the best chocolate cake ever), not ‘poison’. And yes – even after eating those few bites, I still have both my legs, and my kidneys continue to work just fine. But thanks for asking.

Eat how you want. Let others eat how they want. It’s really not that hard.

For the record – this is what I made on Saturday evening. (This one went to the neighbours, but I also made a smaller one for home.) It’s a blueberry crostata. I added a little ricotta underneath the fruit and made a ridiculously buttery pastry to hold it all together. Super easy. Super delicious. (And my CGM trace peaked at 7.3mmol/l for anyone wondering…)

I flew into Lisbon, arriving at my hotel just after midnight on Monday. I get that Australia is a long way from everywhere, but the 38 hours’ transit was a record for me and as I tumbled into bed, I dreaded the alarm that would sound a mere 6 hours away.

However, I’ve done this enough times now to know a sure-fire way to overcome jet lag is to organise a relatively early morning meeting that involves coffee and local pastries. (Hello, Pastelaria Versailles and thank you for your beautiful baked goods.)

The main reason for this trip was to attend the Roche #DiabetesMeetup. (Disclosures? Yep-all at the end of this post….) This is the third one of these meetings I’ve attended (read about the first one at EASD2016 here and the next at ATTD2017 here) and, as always, it was great to see the familiar faces of dynamic diabetes advocates doing dynamic diabetes advocacy.

This year, there were a whole lot of new faces, with over 60 diabetes bloggers from across Europe having been invited to become part of the conversation. As well as attended the dedicated satellite ‘consumer’ events, the bloggers are all given press passes to attend all of EASD.

This is astounding. It means that it is impossible to walk around the conference centre without seeing other people with diabetes. Arms adorned with CGM or Libre are not startling – they’re everywhere. The beeps and vibrations of pumps can be heard in sessions, causing heads to bob up, and knowing glances to be shared. Our presence here is undeniable.

On the first official day of the EASD meeting, the third annual #DOCDAY event was held. While Bastian Hauck (the event organiser) starts by inviting bloggers to the event, he warmly and enthusiastically extends the invitation to HCPs and industry too.

On Tuesday, the room was full of people, discussion and enthusiasm

#DOCDAY has become a platform for anyone who attends to take the stage, and five minutes, to share what they’ve been up to in the diabetes advocacy and support space. I stepped down from my usual language soap box, proving that this pony does indeed have more than one trick.

Instead, I spoke about the role of people with diabetes at diabetes conferences. I couldn’t think of a more appropriate time, or a more suitable room to plead my case, even though I knew that I was preaching to a very converted choir!

Two weeks ago, in Perth, there were a few of us wandering the #ADSADEA conference as part of the Diabetes Australia People’s Voice team. And at one point, on Twitter, where our presence is felt more than anywhere else, an interesting, frustrating and downright offensive (if I’m being honest) discussion started.

It was said that diabetes conferences are the safe place of diabetes healthcare professionals and that perhaps a day at the start of the conference could be dedicated to people with diabetes, but the delegate program (delegates being only HCPs) start the next day.

As you can imagine, that didn’t go down too well with some of the diabetes advocates in attendance.

I am actually unable to provide you with the arguments offered as to why people with diabetes should be excluded, but I think it included reasons such as HCPs need a space to be among peers, these are scientific conferences, HCPs need lectures without people with diabetes (not sure why – are we really that terrifying?).

I’m not into preventing people with diabetes attending diabetes conferences. Melinda Seed’s vision of 1000 people with diabetes at the conference is far more aligned with mine. We are not asking that the conference we ‘dumbed down’. I don’t want the sessions to be any different than they are now (with the exception of having PWD as part of the speaker list – but that is regardless of who is in the audience).

Here’s the thing. Organising a team of three consumers to attend (as happened in Australia) required someone to provide funding and coordination. That was Diabetes Australia and I’m really proud that the organisation I work for created this initiative.

To have over sixty advocates supported takes a commitment. I won’t for one moment suggest that I am naïve enough to believe that we are part of industry’s marketing strategy. But we absolutely should be part of that strategy. I am more than happy to give Roche the shout out and kudos they absolutely deserve for bringing us all together. I don’t use any of their products at the moment (although, in the past have used their meters), so I’m not in any way spruiking their devices or suggesting you go and update your meter with one of theirs.

But I am grateful that as part of their engagement with people with diabetes involves bringing us together at a diabetes conference.

What’s the role of people with diabetes at diabetes conferences? Our role is to share from inside with those not here. We’re here to remind attendees that using language that diminishes us and our experiences and efforts in living with diabetes is not okay. We’re here to tell industry they’ve messed up when they design is not spot on, or their marketing misses the mark. We’re here to challenge the idea that we should be quiet, ‘compliant’ and do what we are told.

As I said at #DOCDAY, we have a responsibility to share what we learn. I acknowledge – every single minute of every single conference day – that I am privileged to be here. And that comes with responsibility to share what I see, hear and learn.

DISCLOSURES

My flights and accommodation costs to attend EASD2017 have been covered by Roche Diabetes Care (Global). Yesterday I attended the Roche #DiabetesMeetup (more on that to come). Roche also provided me with press registration to attend ATTD. My agreement to attend their blogger day did not include any commitment from me, or expectation from them, to write about the day or their products.

This years European Association for the Study of Diabetes annual meeting officially kicked off today. And in amongst the full day of sessions was the third annual #DOCDAY event. Here I am talking very fast, trying to say all I want to before the room fills up with advocates from all over Europe (and the token Aussie), plus a heap of HCPs who were keen to learn more about what this diabetes online (and offline) community thing is all about.

I’m mostly on Twitter this week, so do follow along at #EASD2017

DISCLOSURES

My flights and accommodation costs to attend EASD2017 have been covered by Roche Diabetes Care (Global). Yesterday I attended the Roche #DiabetesMeetup (more on that to come). Roche also provided me with press registration to attend ATTD. My agreement to attend their blogger day did not include any commitment from me, or expectation from them, to write about the day or their products.

Last week, I was invited to speak as the consumer in a peer support symposium at ADS ADEA. My talk was called ‘People like me’ because more and more, I’ve come to understand that the real value for me in peer support is the combination of the masses with diabetes – as accessed through the DOC – as well as those who form a part of my ‘inner circle’, or tribe.

So, obviously, my first slide was this one:

And then, I introduced the audience to my tribe from last week:

People like me! The #DAPeoplesVoice Team (L-R) Ashley, Melinda, Renza, Frank

The peer support symposium was coordinated by the ACBRD. Last year, they produced this report for the NDSS. They brought together four speakers, each speaking about different considerations of peer support.

After I gave my personal perspective on the peer support that works best for me, Professor David Simmons from Western Sydney University spoke about the evidence. The idea (as outlined in the symposium abstract) was to ‘…identify ways in which they are in synergy and/or tension with one another’.

David began by speaking about the Peers for Progress model, highlighting its four core functions of peer support:

  1. Assistance in daily management
  2. Social and emotional support
  3. Linkages to clinical care and community resources
  4. Ongoing support, extended over time.

I can only speak for myself and my own experiences, but the peer support I have carved out for myself meets all these points. While points 2 and 4 are probably the most relevant to me, I certainly have used my peers to assist with the day-to-day grind of living with diabetes and have also found connections with clinical support through my peers.

My experience is certainly not structured or formal in any way, however, for me, it works and it works superbly. Which was another point that I made – we need to find the right sort of peer support and that may be different for different people.

Some PWD may prefer to have something that is very organised. I prefer a more ad hoc, dip-in-and-out-as-I-need-it approach, and focus my energies on what I require at specific times. I also love the online community and the support it offers because it meets many of the things I’m looking for: flexibility (there’s not a meeting on the first Monday of each month to attend and if I can’t make that, I miss out); broad reach and a variety of people (which means that I will always find someone to provide support, no matter what the issue; diversity of experiences so my own understanding of what is going on with others is constantly growing, evolving and, often, challenged; all over the world allowing me to connect with people whatever the day of day – or wherever I happen to be (speaking of which…anyone in Lisbon next week?).

Another discussion point during the symposium was to do with the need for evidence to strengthen the case for peer support, which will ensure adequate funding to run programs. I find this a slightly double edged debate, really. I understand that with limited funding, those holding the purse need to know that money is going to go to programs that are known to work. But equally, I know peer support works. People with diabetes know peer support works. Melinda Seed, clearly frustrated (as am I) at the constant need to defend the value and importance of peer support, posed an interesting question, here:

Now, I don’t doubt for one moment that HCPs get a lot of benefit from attending diabetes conferences. Of course they do – they hear from leading experts, learn about the latest research finding, network with colleagues, speak with industry about new diabetes technologies and treatments. The leave feeling inspired, have improved knowledge, feel supported by others doing what they are doing, and have new tips and tricks up their sleeves top improve their practice. They know that. We all do. And yet where is the evidence to support it?

(For the record, someone did point out on Twitter to Melinda that the difference is that conferences are privately funded and therefore do not stand up to the same scrutiny that programs seeking public funding do. Melinda responded (quite correctly) that this argument doesn’t really hold water as many attendees there attend on the ‘government dime’. It is an interesting discussion….)

I think one of the problems we might have is that we narrow the definition of peer support sometimes, and perhaps some people think that it’s too fluffy and feel-good, and just about sitting around someone’s kitchen table and chatting. But as I said in my talk, there is much more than mere ‘tea and sympathy’, (although, I’m reticent to dismiss the power of such interactions because I know that sometimes those moments do produce a lot of support from people who are otherwise feeling very isolated and alone.)

I am speaking at the World Diabetes Congress at the end of this year and will be challenging the notion that peer support is all about group meetings. It is more than the traditional ‘support group’ model. One example I gave was the Pumpless in Vienna story (yeah – I’ll tell that whenever I can!). It was through peer connections that my friend Jo found a pump. It can also be seen and found in other ways – camps, information sessions, structured education programs. Peer support can be found in a lot of places, even if that’s not the term we give to it.

CEO of Diabetes Australia, Greg Johnson, and me talking peer support after last week’s symposium.

Disclosures

Roche Diabetes Australia has covered my travel and two night’s accommodation for my stay in Perth as I am a presenter at the Roche Educators Day (RED). There is no expectation from Roche that I will write anything about the RED, but I expect I will because it’s always such an interesting and enjoyable day!

The remainder of my time in Perth is part of my role at Diabetes Australia.

I’m Perth-bound for the 2017 Australia Diabetes Society and Australian Diabetes Educators Association Annual Scientific Meeting – or, ADS ADEA ASM, or #ADSADEA2017.

For a week, diabetes health professional experts come together to share the latest and greatest of diabetes in Australia. And this year, I’m so excited that there will be a contingent of diabetes advocates on the ground, tweeting and blogging from sessions.

This is a Diabetes Australia initiative and the idea is to provide as much insight and coverage of the goings on at the meeting from the perspective of people with diabetes for people with diabetes. I’m in great company and the three other bloggers will provide their own unique viewpoint and reports of the meeting. The program is diverse, busy and interesting and it will be great to have a number of people with diabetes at the meeting sharing their thoughts of what’s being presented.

So, who’s on the ground? Melinda Seed from Twice Diabetes, Ashley Ng from Bittersweet Diagnosis and Frank Sita from Type 1 Writes. You can find us at our usual haunts (i.e. our respective blogs) as well as on Facebook and Twitter.

I’ll also be at the Roche Educators Day tomorrow, where I have been invited to facilitate a session made up of people with diabetes (Ash and Frank will be there), sit on a panel as the ‘here’s one we prepared earlier’ alongside diabetes healthcare professionals, and wave my hands around while talking diabetes and language in a session with Professor Jane Speight.

Later in the week, I’m talking about how peer support is a critical component in my diabetes managed in a Peer Support Symposium coordinated by the ACBRD.

Other things I’m excited to see:

  • Ann Morris, ADEA Diabetes Educator of the Year, will be giving her award lecture on Friday which is one of my conference ‘must-sees’. Ann is a dear friend and true champion of people with diabetes. I’ve been honoured and privileged to work with her over many years and I can’t wait to hear what she has to say.
  • The launch of the new Diabetes Australia Self-Monitoring of Glucose Monitoring Position Statement.
  • New tech in the expo hall… (hello Cellnovo!)

And possibly the thing I am most interested to see is if Loop will be able to combat and overcome Conference Hypo Syndrome.

It’s going to be a busy week! Follow along at #ADSADEA2017 and for comments from the ‘consumer reporters’ follow #DApeoplesvoice. You can follow the Roche Educators Day happenings at #RED2017.

Disclosures

Roche Diabetes Australia has covered my travel and two night’s accommodation for my stay in Perth as I am a presenter at the Roche Educators Day (RED). There is no expectation from Roche that I will write anything about the RED, but I expect I will because it’s always such an interesting and enjoyable day!

The remainder of my time in Perth is part of my role at Diabetes Australia.

There’s lots happening, but I can’t look away from my Loop app at the moment because I’m so damn excited and obsessed! (I’ll be writing something about it sometime this week.)

But if I wasn’t doing that, I’d be (re)reading these things…

Why it costs so much to see a specialist
I’ve always paid to see my endos privately. In fact, I generally ‘go private’ for all my healthcare needs – I can’t remember the last time I was bulk-billed for a medical consultation.

It does cost a lot, and I am grateful I can afford it, but the excessive costs often discourage people from seeking the right care they need. Of course, we do have excellent public health in Australia. My choice for seeing HCPs privately include wanting continuity of care, and not being subject to frequently very long waiting periods.

This piece in The Conversation looks at why specialist care is so expensive. And what can be done to reduce costs.

Lookiee! A diabetes Wookiee!
For those who participate in OzDOC (and other DOC activities) you may have come across David Burren. I met David last week to talk all things tech (actually, I just fired questions at him about Loop and he patiently answered them without rolling his eyes even once). He’s started a diabetes blog all about diabetes and technology and, thankfully, it is in language that even I can understand.

Check out David’s Bionic Wookiee blog here.

Statues are like tumo(u)rs.
With all the nonsense going on in America at the moment, this piece from McSweeney’s most adequately explains why the ridiculous idea that statues commemorating less than favourable moments in history need to remain. Here’s my favourite part:

I view this tumor as an important symbol of your body’s history and heritage. Removing the tumor would be yet another example of misguided medical correctness in today’s liberal America. I protest this surgery and refuse to whitewash your rich medical history. The tumor must be kept prominently displayed inside your body.

Do better, America. We all know you can.

More on what’s on the inside
Mel Seed’s blog about normalising mental healthcare in diabetes follows on from DX2Melbourne and is well worth a read. Read it here. 

Diabetes is just…
This…

Faster insulin coming to Aus
A couple of weeks ago, I shared on my socials the exciting news that ultra-fast insulin, FIASP, had received TGA registration. No actual ‘launch’ date info as yet, although next week is the ADS ADEA Annual Scientific Meeting, so we may hear more then.

And in news that we already know…
Apparently, CGM is not just for abdomens anymore… File under ‘No Shit Sherlock’.

Swear-y
My blog emails keep getting blocked by the profanity filter at my husband’s work. Every now and then, he forwards me the message he’s received which states that the email was not delivered due to ‘offensive language’. #SwearyWife

This Twitter account definitely wouldn’t make it through, but it’s one of the best things I’ve seen on the interwebs for a while. I’d like to print THIS up poster size and put it on the wall of my office/wear it on a t-shirt, but perhaps that’s not appropriate.

D-parents and sharing the scary parts of their child’s diabetes online
I’ve linked to Moira McCarthy’s writing before because I think that she gets it right every single time she writes about the role of parents in their child’s diabetes.

This piece asks parents to consider if sharing their child’s scary and dramatic diabetes stories online is doing more harm than good. (I rather clumsily explored a similar issue last year in this post.)

Read her piece at ASweetLife here.

4Ts on Diabetes Mine…
Last month, during National Diabetes Week, in an endeavour to get our 4Ts message out as widely as possible, the good folks at Diabetes Mine allowed me to write a little about our campaign. You can read that here.

Living and loving someone with diabetes
As much as I think I am the most delightful and easy-to-live-with person in all the world, I have to admit that diabetes can and does impact on all relationships… and makes me perhaps not the most delightful and easy-to-live-with person. Aaron and I chalked up 23 years together yesterday. Diabetes has been part of the equation for over 19 of those years.

Diabetes advocates Nicole Johnson and Lorraine Stiehl have written a new book which has been called a practical guide to loving a person with diabetes. I’ve ordered a copy and will be leaving relevant pages open for my loved ones to read.

You can get a copy of What To Do When Your Partner Has Diabetes: A Survival Guide from Amazon. 

Meme-y and true
There are a lot of diabetes memes out there, but sometimes I see one that just hits the mark so perfectly. Such as this from a TuDiabetes community member:

On Monday and Tuesday of this week, I attended and facilitated Abbott Diabetes Care’s #Dx2Melbourne event which brought together eleven Australian diabetes bloggers. (All my disclosures can be found at the end of this post.)

(Just a recap – the DX (or Diabetes Exchange) series of events have now been run about half a dozen times. Other than #DX2Sydney and this year’s Melbourne events, the others have been held in hard-to-take cities including Stockholm, Berlin and Lisbon and have been attended by bloggers from the UK and Europe.)

#Dx2Melbourne reunited most of the bloggers who attended last year’s event, with some new faces thrown in for good measure. I was introduced to Alana Hearn for the first time, finally got to meet diabetes yoga guru Rachel Zinman, and caught up with Helen Edwards. (All the links to the blogs of the ‘repeat offenders’ who attended #D2Sydney can be found on this post.)

Some may believe that I am naïve in saying this, but the event is not about product. In fact, apart from a 45-minute presentation – the session that kicked off the two days – there was no other discussion about Libre or any other diabetes product unless it was specifically raised by one of the bloggers. Abbott did not have a new product to push; Libre has been out for over 12 months now in Australia.

(I am not, however, naïve enough to think that events like this are not part of the health industry’s 21st century marketing strategy. But, as I said last year when responding to a comment on my blog about this, this is the 21st century marketing. And I’m glad that consumers have a place in this strategy, because it would be far worse if industry was continuing with 20th century marketing strategies which completely excluded people with diabetes, and did not offer us any opportunity to directly engage and work with industry. Any device company NOT doing this is falling way behind and needs to catch up.)

As the Abbott team stated in their welcome, the idea of the DX events is to continue their commitment to bring together people living with diabetes to share ideas. And for Abbott to get an idea of what it is that is important to people with diabetes and what makes us tick – albeit a very select and privileged sample of advocates.

With this in mind, for me, the most valuable part of the event was the discussions that were completely driven by the bloggers. In an open session where we were exploring ‘why we blog’, I listened carefully as everyone articulated their reasons for going online and sharing their stories with strangers.

Reasons varied – some do it because they simply want to tell their story, some because they love to write, some have specific issues within diabetes they want to open up for discussion, some see it as an advocacy platform. What we don’t hear – ever – is anyone saying ‘Because I want to make money doing it’.  I can be all evangelical about it and say it’s because we’re a choir of angels, but mostly I think it’s because we’re smart enough to know the limitations of what it is that we do, as well as understanding the strength is in connecting, not money-making.

We also considered the shortfalls of having an online presence.

I’m an over-sharer and I know that there is a lot I write that many others wouldn’t feel comfortable sharing – and some people have told me that it is sometimes difficult to read. I also write about issues that are of no real concern to others, and they are more than happy to let me know that I’m wasting my time and energy on such irrelevant (language) matters. I also know that as soon as I put something out there, I am opening myself up for comment – both positive and not-so-positive. We had a discussion about how we manage unwanted attention and, in the most extreme cases, trolling.

I have never regretted anything I have written or shared, and have never taken anything down because I’ve felt it was too personal. But I have had some very unwelcome and sometimes nasty comments sent my way.

I found this a really useful, but somewhat challenging, discussion. I have written about some very personal experiences, probably most notably, pregnancy loss. I’ve also written a lot about how diabetes impacts my mental health. These are two topics that are frequently hidden away, surrounded by shame and secrecy – precisely the reason that I am committed to writing about them.

However, the times I’ve been trolled – and fortunately, that hasn’t been often – it has been when I’ve shared very personal stories. They’ve been the times where I have found myself at my most vulnerable, and being so exposed makes any sort of negativity harrowing.

It was reassuring to discuss – and remind each other – that even though we are voluntarily putting ourselves online, we are not inviting people to be nasty and disrespectful. Online is real life, despite what some people may think. This is the space where many of us convene to work together, support each other and share information; it’s not a place for personal attacks.

I left the event on Tuesday feeling utterly exhausted, but also filled to the brim – a feeling that only comes after spending a solid period of time with others treading the blogging and advocacy boards. I was reminded of the similarities as well as the differences we experience living with diabetes. I felt buoyed by the various issues that draw our attention. I felt desperate at the access issues I still hear about – both here in Australia and overseas. But most of all I felt part of something that is much bigger than me, much bigger than my blog and much more powerful that anything I can do on my own.


DISCLOSURES

Abbott Diabetes Care covered all my costs to attend #Dx2Melbourne, and provided all attendees with two FreeStyle Libre sensors and, if requested, a scanner. There was no expectation from Abbott that I would write about the event or any of their products, and everything I do write about it is my opinion, in my own words, and in no way reflects those of Abbott – or anyone else, for that matter.

Follow Diabetogenic on WordPress.com

Enter your email address to follow this blog and receive notifications of new posts by email.

Read about Renza

This website is certified by Health On the Net Foundation. Click to verify. This site complies with the HONcode standard for trustworthy health information:
verify here.

Archives

Twitter

%d bloggers like this: