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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.
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!)
After pounding the corridors of the Adelaide Convention Centre, it was nice to have a quiet weekend of recovery, coffee and sleep.
And I caught up on lots of World Wide Web happenings. Here are some highlights.
LET’S TALK ABOUT COMPLICATIONS.
I am always saying how lucky I feel to have friends with diabetes both online and IRL. I always get a kick out of meeting people in person who I have connected with on social media. Kim Hislop is one of those people. I met Kim for the first time at the ADA conference in Boston this year and then again at Friends for Life in Orlando.
Last week, Kim guest-blogged for Kerri at Six Until Me about living with complications and her post is required reading for anyone affected by diabetes.
Complications are spoken about as an ‘end point’: if you do this/don’t do this, you will get this. Full stop. Threat, threat; blame, blame; guilt, guilt.
Where is the discussion about what happens next? Actually, what DOES happen next?
Kim’s piece starts to answer those questions and open the dialogue. Thank you for writing it, Kim!
NERD ALERT
THERE IS A PERIOD TABLE OF DIABETES!!!! I am too excited to write anything more. (And busy memorising it….)
(Click on pic for source.)
STICK TO THE FACTS TO COUNTER THE ANTI-VAXX
My heart broke a little last week when one of my favourite artists, cartoonist and poet Michael Leunig, had a cartoon published in The Age newspaper that could only be considered as anti-vaccination propaganda.
I adore Leunig and pretty much all he does – we have a Leunig drawing on our wall and I have barely been able to look at it since I saw the cartoon in the paper.
An article I read today in MJA says that perhaps we need to reframe the way we try to deal with those sprouting anti-vaxx rubbish. The message from this study proposes that instead of shouting about the irrefutable scientific evidence which demonstrates that vaccines are safe we should show parents what vaccine-preventable diseases actually do.
This makes sense. Most people have not seen what diseases such polio or measles actually look like. Thanks to the success of vaccines, most of these infectious diseases are uncommon. Instead of sprouting stats, show pictures
ARTY
I’ve written before about how we love the artwork of Josh ‘SHAG’ Agle and Derek Yaniger. Last week, I was introduced to Cliff Roberts an artist who illustrated the gorgeous (and unfortunately out of print) The First Book of Jazz.
My new project is to find a copy of the book and also some of his prints to adorn our walls.
Artwork by the wonderful Cliff Roberts
ICYMI
Last week was the ADS-ADEA annual scientific meeting. Click back through last week’s posts to see what went on. And read Ashley’s take aways from the conference over at Bittersweet Diagnosis.
COUNTDOWN TO WDD
Somehow, tomorrow is September. Which means that we are a mere two and a half months away from World Diabetes Day 2015. The IDF has launched its campaign for WDD this year and you can read all about it here.
The theme this year is all about healthy eating and its importance in diabetes management. Which it is. Even type 1 diabetes. I can already hear the ‘food has nothing to do with type 1 diabetes’ protests, but how about instead we consider how healthy eating is important to healthy living. And that includes those of us with an under-performing pancreas.
Healthy eating is a right – one that is not afforded to everyone. And this is a campaign that is worth supporting.
PRETTY THINGS
Prikkedief is an originations from The Netherlands making some pretty gorgeous diabetes fashion. You’ll find beautiful buttery leather awareness bracelets, pouches to hold diabetes supplies, cheeky t-shirts and fun wall art. Find them on Facebook here. (Their website seemed to be down at the time of writing this.)
Pretty pastels from Prikkedief.
ONE FOR THE WOMEN AND ONE FOR THE MEN
Diabetes Victoria is holding its annual Women’s Weekend in October. Details are here.
If you are thinking about possibly attending, but are just not sure, I would absolutely urge you to book. The previous two events have been hugely successful with attendees being overwhelmingly going home inspired and armed with new strategies to live well with diabetes.
And men are not forgotten. There is also an event exclusively for men living with type 1 diabetes coming up in information session coming up in October. Details here.
FUN FACT
The plural of pancreas is pancreata. You are welcome.
Adelaide is sunny and fine and lovely. I am here for the ADS-ADEA conference which officially kicks off tomorrow.
Today, the Roche Educators Day – is a program of practical sessions which, according to the program notes, ‘aims to determine and understand unmet needs in diabetes from the clinician’s perspective.’ The program also promises ‘Experts in the field of diabetes will share to you their clinical experience and knowledge on various topics in relation to diabetes management.’
It is a great program with some incredible experts. And me pretending to know what I am talking about and trying to not be a trouble maker.
The day kicked off with Professor Jane Speight’s plenary session – ‘Adherence and Motivation: Dealing with the elephants in the diabetes consultation’. Jane’s talk was, as expected, full of practical tips. She challenged the people in the room to think about what their expectations are and if they meet the expectations of people with diabetes.
I presented next, delivering an hour long session on ‘Diabetes in a digital world’, where I put a spotlight on how social media can be – and is being – used by people with diabetes and healthcare professionals to connect, support and enhance care. Plus, I used cartoons and cat pictures. Because I was talking about the internet. I will be doing the same talk later this afternoon and I hope the audience is as receptive as this morning’s audience.
I’ve also had a look around the Exhibition Hall and while I will tell anyone who asks that it is because I am interested in the latest and greatest in diabetes management, the real aim for today was to find where the best coffee can be found. Head to the Novo stand, people. The English barista from Sydney has shattered all of my Melbourne-coffee-snob-bias and bangs out a bloody good latte!
Other important priorities for the day included avoiding conference hypo syndrome (failed miserably AFTER mentioning it in my talk), tweeting the bejeezus out of all the sessions (except my own, because although I can multi task like a boss, I’ve not yet learnt how to tweet while giving a talk), and trying to remember that I can’t take photos of…well…pretty much anything.
Looks like it is shaping up to be a great conference. Follow along at home on Twitter: #ADSADEA2015 (and for today’s Roche Educators Day: #RED2015)
Oops. Broke the ‘no photographing in sessions’ rule.
DISCLAIMER
I am here as an invited speaker. Roche has covered my travel, accommodation and conference fee costs. There was no arrangement for me to write about the day – I’m just doing it because it’s been very interesting! I am very grateful to Roche for putting a consumer on their speaker panel today. It is terrific to see industry engaging in such a meaningful way.
Putting together a presentation a couple of weeks ago, I came across this and was so excited I actually squealed:
(Click image for source)
File it away under #RenzaIsAGeekGirl (#AndProudOfIt)
Have a great weekend! My family and I are travelling to Orlando for Friends for Life on Sunday. I’ll be popping in now and then next week.
Here is a little bit of Tom Lehrer. Please indulge me! (And for Harry Potter fans, here you go.)
I got to Saturday evening and felt like I needed to collapse! I was more than a little diabetes-ed out. The end of last week and the beginning of the weekend were huge – attendance at a health professional event on Friday, the Diabetes Expo on Saturday and, of course, the gift that keeps on giving, the television thing on Thursday.
When diabetes is so front-and-centre, it is really tough to think clearly and about all the information that has been shoved into my itty-bitty mind. Stopping and searching around for some things I have learnt and taken away can be difficult. Which is why Twitter is good!
Here is what I learnt over the last few days.
People want information about diabetes. There is still so much misinformation out there that people living with diabetes sometimes have a hard time cutting through the noise and working out what is valuable info and what is made-up-psuedo-science-crap-from-some-idiot-trying-to-sell-you-magic-beans-to-cureall. So it’s good to have sensible people saying sensible things! (Hashtag – Evidence)
And I also learnt that diabetes is still seen and considered by too many as a clinical condition and there is not enough attention given to the emotional impacts of living with it.
Thankfully though, I was reminded that there are people out there who can help with this!
I learnt that Twitter trolls will latch onto hashtags that are getting some attention and try to infiltrate it with their nonsense. These trolls should be ignored. Except, of course, I didn’t. (However, I will not share your Twitter handle here!)
And these nutters will try to discredit you by challenging your Nutella addiction. Fools!
I was reminded why the Herald Sun is not the place to go for credible diabetes information.
And promised baklava from one of Australia’s leading researchers in diabetes. Thanks Sof!
I learnt that it’s surprising who watches morning magazine television shows. Like the uber-cool waiter at Marios who announced loudly as we walked into the café yesterday, ‘I saw you on TV’!
I remembered that people walk away from these sorts of events feeling positive and rejuvenated and connected. Which makes them worth it in a million different kinds of ways.
And I learnt that after a hugely successful few days of work activities that hanging out with my family, listening to Carol King and drinking coffee in my favourite café and then watching the Eurovision song contest final will make me feel energised and ready to face the new week.
Hello Monday!
I know it’s not Friday, so here is something for your MONDAY listening pleasure!
It’s Diabetes Blog Week! Thanks to Karen from Bitter~Sweet Diabetes for coming up with and coordinating this exciting annual event. It’s a great chance to discover other diabetes bloggers from around the world. Here’s my fifth entry for the week!
I have been looking forward to this #DBlogWeek post all week because, well, food is my thing. I still believe that growing up in a family where food is considered important and dealt with in a positive, healthy way is why I have such a balanced, appreciative attitude towards the food I eat and the food I prepare for my family and friends. And I hope that this is being instilled into the mind and heart of the kidlet of the house.
I love to cook for people and our new home is the perfect entertaining space. We have a huge kitchen with heaps of prep space and a view over the garden. There is an old Aga stove which, when we get around to having a chimney sweep clean it out, will be used for all sorts of things including making bread and pizza.
On Saturday night, we had some friends over for dinner. Although I love cooking, I can be a lazy cook. I make no apologies for that, nor is it a negative trait. I made a chicken, chorizo, lemon, garlic thing that took a whole three minutes to throw together. The oven did the rest. (In a baking tray – chicken pieces, chopped chorizo, sliced lemon, bashed garlic, a bit of chicken stock in the bottom of the tray, sprinkle the top with paprika, sea salt and black pepper and shove in a 180 degree (Celsius) oven until the chicken is all golden on top and the smoky chorizo has infused it all; about 30 – 45 minutes.) I made a couple of yummy vegie-based sides and a salad using quinoa and that was it. Dessert was a crumble because it’s crumble weather.
Crunchy apples easily become soft, cinnamon-y and comforting (especial with crumble topping!)
A story of crumble…
While we’re talking crumble, I always make double or triple the quantity of topping to keep on hand in the fridge. That way, it’s always easy to throw together a simple, yet scrumptious dessert. Stewing apples or pears takes no effort and if you want to be super-lazy, open a tin of peaches or apricots or whatever floats your boat, drain some of the juice and sprinkle the crumble-topping-already-in-the-fridge over the top. Twenty minutes in the oven and you’re done. (Basic crumble recipe – rub together a cup plain flour and about 100 grams of butter; add a couple of tablespoons of brown sugar, a cup of oats, and then whatever else you have that you think will work. Add cinnamon for apple crumble, dark chocolate for pear crumble, coconut when you have rhubarb, almonds for stone fruits. Walnuts always work in crumble. Always!) According to my husband and the kidlet, crumble must come with ice-cream; I prefer King Island double (or triple) cream. Plain Greek yoghurt works well too.
Baking biscuits and cakes is one of the most therapeutic and calming things I know how to do. Yesterday, I decided to try something new and found a recipe for Nutella drop biscuits which were just a buttermilk scone recipe with Nutella swirled through. Great concept; super easy, made the house smell like a bakery and tasted great. Plus, they can be frozen and then thawed, heated and served with some salted butter for a speedy afternoon tea.
Last night’s dinner.
Vegetables are a big deal in our house. I love veggies and at this time of year, my favourite way to eat them is in a thick chicken stock-based soup with added barley. Again, this is a lazy cook thing because not only is it a great way of using up almost-past-eating vegies, a huge vat will do a couple of meals. (It freezes really well too.) I usually serve with some toasted crusty sourdough. Last night, however, I used up some leftover risotto and made crunchy rice croquettes to go on the side.
This morning near work at Stove Top.
We eat out quite a bit. For me, the plethora of workday meetings are often more palatable if there is a coffee, a pleasant café and, possibly, a little cake (Or fairy cake!) involved. Weekends involve catching up with friends at local cafés and regular catch ups with the girls are another excuse to go to Marios.
Food is a thing of joy. It is a thing of love and it is a thing of celebration. It should taste wonderful, it should be evocative and it should not be full of angst, but I know that is not the case for a lot of people. I really do believe a big part of that is the current focus on ridiculous diets and eating plans and rules instead of enjoyment, moderation and joy.
At the moment, it’s a rare day when the oven is not on, baking or stewing or roasting something in its warmth, intensifying flavours and delivering, at the end of the cooking process, a wonderful hearty dish. It’s probably my favourite thing about this time of year and there is nothing better than settling in for the cold night on the couch, fire lit, with a delicious, hearty bowl of something.
I am so pleased that diabetes hasn’t stripped me of my love of food, because many people do think that those of us living with diabetes have a strict, flavourless, boring, repetitive diet. It doesn’t need to be that way.
I’d add eating after cooking!
Friday tune – Fats Waller with ‘All that meat and no potatoes.’
It’s Diabetes Blog Week! Thanks to Karen from Bitter~Sweet Diabetes for coming up with and coordinating this exciting annual event. It’s a great chance to discover other diabetes bloggers from around the world. Here’s my fourth entry for the week!
Welcome to Diabetogenic Live! Here is my first ever (and possibly/probably last ever) vlog. I’m talking about the changes I’d like see in the Land of Diabetes (which is nowhere near as much fund as the Land of Goodies or the Land of Birthdays or the Land of Do-As-You-Please).
A few words of warning before we start:
- I speak really fast.
- And I wave my hands around a lot.
- I speak really fast.
Diabetogenic 
