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Emergency!!!
I was a little excited to learn the other day that my iPhone 6 could do this:
My medical ID can be accessed from the lock screen (i.e. no password required). The details can be customised (as such, I have chosen to NOT include my weight here!) and ICE contact details can be added.
How much will paramedics and other emergency services staff use it? I’ve no idea. But it gives me another excuse to lull myself into a false sense of security believing that I don’t need to wear a medical alert bracelet. (Okay, okay; I’ll get on to that!)
What’s the latest from MySugr?
This! Congratulations guys – so thrilled to see that you are continuing to go from strength to strength. It’s what happens when people with diabetes are creating things for people with diabetes.
My Sugr – helping diabetes suck less.
Dexcom. Like a pancake.
The new lower profile Dexcom has been launched in Australia. Which is good because the first G4 sticks out this much:
And when wearing a dress that is this tight, it’s pretty bloody unforgiving!
Doctors 2.0 tweetchat
I know that it seems pointless talking about this after it happened, but this morning I took part in a terrific tweet chat from the wonderful Denise Silber (I love that I get to refer to her as an American in Paris – ‘cause that’s what she is!) and the team at Doctors 2.0 and You. Read the transcript if you can (hashtag: #doctors20) – it was a great discussion about fostering the consumer (patient) HCP relationship using SoMe.
Munchausen by Internet
This probably warrants a blog post of its own, but in the meantime, have you been keeping an eye out on the Belle Gibson story? The short of it is that Belle, who has built a social media empire sharing her story of beating cancer using only diet and positive thinking, has not been entirely honest.
Not only does it seem that Belle is not who she says she is (she is not even the age she has said she is!), but there is mounting evidence that she never even had cancer. Add to this some questionable online fundraising activities, and you can understand why this story has captured the media’s attention.
While the whole story is reprehensible, it has left a lot of people asking why someone would fake having cancer (or any other medical condition). As it turns out, this is a thing. And it’s called Munchausen by Internet.
I first read something about Munchausen by Internet years ago in the Good Weekend. (You can find the article here.) And once I became part of the DOC, I remember a couple of times where people who have claimed to have diabetes have been exposed as fakes. (Here’s a post from Your Diabetes May Vary.)
There’s lots about Belle Gibson’s case online at the moment. Start here. And here.
Kudos to D-UK
Last week was the Diabetes UK Professional Conference in London. It was great to see so much twitter activity from the conference with a significant contingent of consumer (patient) bloggers and social media folk at the event and tweeting from some of the sessions.
Well done to D-UK for remembering that even though the event may not be for PWD, we have an interest in what is happening there. And who better to share that information than others living with diabetes?!
Bugger off Pete Evans
It’s never nice to take delight in someone’s misfortune, but let me tell you that I have been doing A LOT of fist pumping with all the articles exposing Pete Evans and his latest ridiculous efforts to provide nutritional information for babies. Yes. Babies.
As a foodie and someone who has a ridiculously large cookbook and cooking magazine collection, I am always on the lookout for new recipe books. Because they are a good source of…recipes. The people writing these books are chefs or cooks who are good at….cooking.
But the second that someone moves from cook/chef/someone who can show me how to incorporate Nutella into another recipe, to pretend healthcare professional, they are no longer welcome on my bookshelf.
I don’t care that Evans claims to be working with a ‘nutritionist’, he is a chef. His area of expertise is mixing ingredients together, cooking them at the right temperature for the right length of time to produce something yummy.
He’s not done any meaningful study that gives him any credibility at all to provide information about nutrition. At all. So why he thinks he should be playing in this space is completely and utterly beyond me.
Recipes!
I made these. And they were delicious. I adapted the recipe slightly and half of the biscuits ended up with Nutella AND peanut butter in the filling. Which made them even better.
Driving
After I wrote this piece, I’ve had a lot of people mention to me that they have been asked to provide an eye report for no apparent reason.
This seems to be a particular issue in Victoria.
Remember – if you’ve not been asked to provide an eye report before and at no time has it been indicated on your medical report (filled in my your GP or endo) that you have diabetes-related eye problems, you are not required to (as a matter of course) submit an eye report.
Again – Nowhere in the regulations does it state that it is mandatory for people with insulin-treated diabetes to arbitrarily provide an eye report.
The best way to address it if this has happened to you is to start by calling the number of Medical Review at VicRoads and query the request.
If you are not satisfied with the response (i.e. you are still being asked to fill in the eye report and are told that the regulations call for this) call the Advocacy team at Diabetes Australia – Vic.
Cartoons
New Yorker cartoons are possibly the best things ever and the medical ones have me giggling all the time. Like this one.
Don’t blame me once you click on this and then don’t get another thing done today!
Happy St Pat’s Day!
When the kidlet was about two weeks from being born, Aaron and I went to see The Chieftains play at The Palais. For two hours of jigs and reels, the little munchkin kicked and danced around, only stopping when the music stopped.
I’ve seen a couple of examples recently of some pretty nasty Twitter activity. I don’t know why people feel the need to be anything other than supportive and encouraging of those sharing their personal experiences of living with diabetes and trying to connect in a positive way.
And I certainly don’t know why anyone would want to attack another person because of the way they are choosing to manage their condition – a condition that just plain sucks most of the time. This isn’t about us all agreeing and having the same ideas. Cookie-cutter diabetes is just not a thing. (Now I want a cookie.)
Diversity of opinions is one of the reasons I actually love social media. I really do like to consider things from different perspectives and hear how and why people do things the way they do. Reading about new ideas and perspectives are a great and productive way to consider what I am doing with my diabetes management and decide if perhaps there is something else I could be doing, or something I could be doing differently.
But I would never think that just because someone is doing something different to me they are doing it wrong. And I would never, ever attack someone for what they believe. Slight disclaimer – anti-vaxxers and people spreading false information about health conditions. (Sarah Wilson – I’ve been spending a lot of time really loving myself and I still have autoimmune shit going on. Please explain.)
So, I’m going to just gently park this here.
Be nice. Really. Be nice. And remember that this journey called diabetes that we are on is not all smooth sailing. And making waves by being nasty to people is not helping anyone.
I should add that these sorts of incidents are isolated. For the most part, Twitter is full of people who support and encourage and lift each other up. And for that, I am eternally grateful.
Friday funkiness comes from the legendary Tower of Power. A couple of years ago, we arrived in San Francisco and two hours later, we were at the Alameda County Fair listening to these guys on stage. No better way to get over jet lag!
It’s the Friday before a long weekend and this chicken is looking forward to three days of nothing! I’ll be back on Tuesday for #DBlogCheck day.
Things I know to be true:
- It’s February already.
- Melbourne seems to have misplaced its Summer.
- As much as I loved being in New York and had the best holiday ever, it’s always swell to come home.
- And having Melbourne coffee running through my veins is making me a happy chicken.
- Being at work is not the worst thing, especially when there is a year of really exciting things on the horizon.
- I am confused that my computer does not recognise the word Nutella and wants to correct it to Nigella. Which is equally awesome and sexy.
Also – the internet never disappoints.
Frocking brilliant
Sometimes it’s tough for a dame to find a place for her insulin pump. Bra? Good in theory, but what if you’re not wearing a bra? Or your bra is being uncooperative? Thigh strap? Again, great idea, but not great if the thigh strap comes loose and starts rolling down your leg and you end up in the Ministry of Silly Walks. Also, it can look like you are packing heat. Or you end up using ugly (although effective) Tubigrip. Pocket? Usually produces an unsightly bulge that may have people searching for a matching Adam’s apple.
What’s the solution?
Read here about some clever folk who have come up with a rather dashing frock with a secret little place to hide a pump.
And who doesn’t love a LBD? Can’t wait to get my hands on – and body into – one of them! Available soon – keep an eye out here.
Two spreads in one
There are many tough decisions in life. Lennon or McCartney? Coffee or tea? Jaffas or Malteasers? (Both, obviously.)
And the most difficult: peanut butter or Nutella? Can’t decide? Then have both! In domestic goddess mode on Sunday (full skirt, frilly apron, high heels and tiara) I made these.
And they are were good. And totally bolus worthy!
Here’s the recipe. (And here’s a tip. When freezing the Nutella before making the biscuits, do half on one baking sheet and half on another. Take out one baking sheet, make half the biscuits. THEN take our the second baking sheet and make the second half. Otherwise the Nutella starts to melt and ends up all messy and all over your fingers and you have to lick it off your fingers and then freeze more.)
Oh, and while we’re talking Nutella, let me introduce you to my happy place:
Support DA-Vic and enjoy the Melbourne Food and Wine Festival (WIN WIN!!)
This year, Diabetes Australia – Vic (disclaimer: my place of employment, but I am writing about this because I want to, not because I was asked. Also it is about food. And wine. So there’s that too.) is the charity partner for the Melbourne Food and Wine Festival. Some people may think that this is an odd partnership, but actually, the messages of both DA-Vic and MFWF are strongly aligned. It’s all about people taking an active role in managing their health – regardless of if they are living with diabetes or not. And having a good understanding of the food we choose to eat is part of this.
It’s also a great opportunity to raise awareness of diabetes, reaching people we may otherwise not reach.
Now, everyone knows that I am not really an exercise fan. However, I can definitely get on board this. It’s literally a moveable – well moving – feast where participants take a walk around the Tan, stopping at stations for a delicious five course brekkie. And better yet, 5 per cent of ticket/registration fees will be donated to DA-Vic.
Noteworthy connections
Many of you may not know that in a former life I was a classically-trained musician. That ship sailed a long time ago and I no longer play music. However, my husband is a musician and music is a huge part of my family’s life.
I have always been interested in the link between music and health. The Greek God, Apollo, was God of both healing and music, so the connection has been around for a long time!
Music has been used as therapy in a variety of medical conditions from Parkinson’s Disease to recovery from stroke. I am not going to say the healing powers of music can cure diabetes (although I’m pretty sure some fool will tell you that). But, music can be a stress reliever. And for me, reduced stress means less erratic BGLs.
There are also strong links between music having positive effects on mental health as discussed in this information sheet from ReachOut.
I love this so much
I’ve shared this blog before here, but this post from Annabel over at The Understudy Pancreas is one of the most beautiful pieces of writing. Full stop.
I can’t begin to imagine what parenting a child with diabetes would be like, but Annie does such a wonderful job of explaining how her family do it.
The thing that I probably admire most is how Annie never, ever makes her daughter’s (Pumplette) diabetes about herself. She supports her daughter in the best ways possible, encouraging her independence, and being there for her – with what Pumplette needs. Great parenting advice all ‘round, really.
I wish I could reach into my computer and give you a huge hug, Annie. Your darling girl is so great.
Radio Deluxe
When we were in New York, we spent a very pleasant evening at Birdland listening to John Pizzarelli and Jessica Molaskey perform. It was a gorgeous gig, made even more wonderful when they dedicated a song to the ‘family from Australia’.
Each week, John and Jessica have a syndicated radio show (they claim it is ‘live from high above Lexington Avenue in the Deluxe Living Room’, and while I suspect it is actually recorded in a studio, I like to think of them in their living room at home, gazing out over the New York skyline, casually chatting into a couple of vintage microphones) and it is an absolute treat to listen to.
Check it out here. It makes a great soundtrack to the workday!
What do ‘patients’ really think? (Maybe stop using the word ‘patient’ to begin with…..)
British medical journal The BMJ has started a fascinating new series called Do you know what your patient is thinking? This is part of their patient partnership strategy and will hopefully help HCPs better understand all aspects of life with a chronic health condition – not just what …..
The first in the series, Why there’s no point telling me to lose weight, can be read here. New submissions will be published monthly.
Living Vertical
Steve Richert has lived with diabetes for 17 years. A couple of years ago, Steve wanted to show that diabetes hasn’t stopped him from doing what he wants, so he and his wife, Stefanie, travelled across North America and climbed for 365 consecutive days. Just like with diabetes, there were no days off.
I absolutely love the catalyst for this project. This is what Steve writes on the Glu website:
‘In 2011, I had lived for almost 13 years with type 1 diabetes, and despite the normal ups and downs, seasoned with occasional close calls, it had never stopped me from being me. In fact, it made me who I was. When I was on a trip to visit friends, Stefanie and I drove past a billboard aimed at fundraising for diabetes research. It made my blood boil.
It was a smattering of grim statistics and stock imagery geared to promote the idea that life with diabetes was no life at all—that we are weak and helpless victims of this condition. Before this point it hadn’t ever occurred to me that the message of being empowered had any place in diabetes. I didn’t know anyone else with type 1 diabetes and I assumed everyone just came to terms with it as I did. Seeing this billboard made me aware for the first time of how we are portrayed—and how that can impact someone.’
A film has been made of Steve and Stefanie’s adventure. You can read about and watch Living Vertical: Project 365 here.
Save a child…..
Thinking about Valentine’s Day? Don’t forget to Spare a Rose, Save a Child.
No four words sum up this campaign better than this ‘Flowers die. Children shouldn’t’.
Please donate. Remember the equation: One rose = insulin for one month. Multiply as many times as you can.
That’s all for now, folks. Happy Tuesday.
I’m back at work today (pretty sure you can feel my delight in just those five little words). I know I am back at work because I am wearing a pencil skirt, tights and black high-heeled pumps instead of jeans, boots, a scarf, a hat, gloves and a puffer jacket with some sort of fur lining. Today I look like I am ready for work rather than ready for a day of wandering around New York.
But all is not lost. It’s been six weeks and I have a wonderful holiday of nothing but great memories and a photo album of nothing but gorgeous photos. So, onwards and upwards and all that.
Yesterday, as I sped around the supermarket, the onslaught of the next commercial opportunity hit me fair and square in the face. No, I’m not talking about Easter (I could act all outraged that there are Hot Cross Buns in Woolies, but we bought some and have been eating them, so that would be kind of hypocritical). I am talking about the festival of love – Valentine’s Day.
Valentine’s Day can go one of three ways for people. It can be a day of overt love declarations involving flowers, cards, poems, sky writing, gorilla-grams, stripper-grams (don’t judge), candle light, champagne, walks on the beach; it can be a day of sadness and misery and feeling left out; or it can be a day of complete oblivion where one is confused why there are so many people carrying bunches of balloons with ‘I wuv you, Shnookums’ written on them in glitter.
This year, I say screw that. This year, I say how about you do something that is meaningful that will not only help others, but also make you feel great. This year, it doesn’t matter if you have a Valentine or not. Everyone can play.
I am, of course, speaking of the Spare a Rose Save a Child campaign.
Now, if you have diabetes and/or any links to the diabetes word, you have probably seen and heard about this campaign before. I’ve even written about it here. The general gist is that instead of sending a dozen roses to your Valentine, send eleven instead and with the money that would have bought the extra one (about $6 in Aussie money) make a donation to Life for a Child. Those five bucks will provide insulin to a kid in a developing country for a whole month. Or, give your Valentine ten roses and donate $12.
All good, right?
But I have a little challenge for you.
This is a brilliant campaign because it is so simple. It’s easy to explain and it’s really easy to get involved. So my challenge is this. Let’s get this moving way out of the diabetes world. Let’s get this into the hands and hearts of our friends and family who may not really consider this as an idea for Valentine’s Day. Let’s tell our workplace HR teams and see if they can encourage it as a work-place wide giving program (there’s even a tool kit to get you started!). Pop in to visit your neighbours and ask them to get involved. Next time you are going for a walk in your local shopping centre, drop in to some of the small businesses and ask them to get involved. Ask your kids if they would like to donate some of their pocket money.
Roses and diamonds and jewellery and books and CDs and vouchers for massages and guitars and DVDs of favourite movies are all lovely and fun for Valentine’s Day and I am not suggesting you complete give up on the idea of sharing gifts. But how about sharing the love a little this year? I know that I certainly will be making a donation and have already strongly suggested to my Valentine that he do the same. (And check out this and this cute card to attach to your gift, telling your Valentine how you’ve shared the love this year.)
So, how about making sure a child has life-saving insulin available to them by donating just a few dollars in your loved one’s – or your – name. Because THAT is a gift of love and I honestly can’t think of anything I would like more this Valentine’s Day.
This week, I wrote a personal piece about an extended bout of diabetes burnout. (Whoa – that’s a lot of words with ‘…out’ in them….)
I have been overwhelmed by love and support from the diabetes online community, and people outside the community as well. Seriously, completely and breathtakingly overwhelmed – and wish I could reach out to every single one of you who has reached out to me to thank you and give you a Nutella cupcake.
I wrote about this for one simple reason – it is my real life with diabetes, and that is what this blog is meant to be all about. Sugar-coating (ha ha – whatever) life with diabetes does no one any good and there is no point pretending it is all fun and games.
Talking about the times things are going well is really easy. Being humorous and looking at the bright side is easy too – and as a person who really does usually see her (champagne) glass/coffee cup as being half full, it is easy for me to seem positive about things all the time.
But the problem with that is that we don’t talk enough about the tough things. And that leads to feelings of shame, which, in turn contributes to stigma.
One of the reason I am such a huge supporter of the Australian Centre for Behavioural Research in Diabetes (ACBRD) is because, apart from being a bunch of fabulous, smart, funny and lovely people, their work means we are talking about the emotional wellbeing side of diabetes. Thanks to the immense body of work they are doing, diabetes is being seen as far more than a numbers game. The quality of life implications of living with this chronic condition are being considered and we are getting a better understanding of distress, anxiety and depression that is related to diabetes. Even more importantly, we are talking about it. And even more importantly, there are strategies being developed to address these things.
I’ve been writing about mental health and diabetes – and wellbeing and diabetes – for some time now because we need to be able to discuss it freely, free from judgement, devoid of stigma.
It’s the same reason that I have written so openly about my miscarriages. I don’t do it because I want people to feel sorry for me or pity me. I do it because it is part of my story. And I do it so that others can see that it is a perfectly normal thing to happen and that there is no shame in it. After I had my second miscarriage, my mothers’ group met. We were sitting around in someone’s living room with our young kids toddling around, playing quietly. It had been a while since we’d caught up and we were going around saying what we’d been up to.
‘Oh, things are their usual crazy self,’ I said. ‘But I had a miscarriage last month, so have been dealing with that too.’ It was the first time I had told anyone, apart from my immediate family and very close friends.
One of the other mums looked up sharply. ‘What? Why didn’t you say something? Why didn’t you let us know? I had a miscarriage three weeks ago. I don’t know anyone else who’s had one. I really need to talk about it, but didn’t know who to turn to. I really wish I had known.’ And she burst into tears, coming over to give me a hug. We sat there and discussed our experiences and how we were feeling and how we were dealing with things. We both felt guilt and shame. We both felt we had somehow failed ourselves and our partners and our families. We both felt the same way – yet were telling each other that we were wrong to feel that way.
It was at that point, I decided that I would no longer hide my story. Because hiding it – when I am usually such an open person – suggests it is something to be ashamed about. Because that’s what happens when issues go underground, we feel shame. I don’t want any woman to feel ashamed because she has had trouble carrying a baby. I don’t want any person to feel ashamed because they are feeling overwhelmed or depressed or in distress because of their diabetes.
There is no ‘fault’. And there should be no guilt. So when we open up and talk about the not-so-good things, we see and accept that this is part of life. It normalises things. It allows for open and easier discussion. And it helps us connect with others who are sharing the same experiences.
Because I can promise you, my story of burnout is not unique. Absolutely not.
I’ve decided that my two favourite words in the world are not ‘coffee, please’ or ‘shoe sale’. No. They are ‘me too’.
Apparently, it’s snowing in New York! So the Brian Setzer Orchestra, live at the Rockefeller Centre with ‘Winter Wonderland‘ seems more than a little appropriate today!
There was a piece in the Huff Post the other day about things to not ask someone living with a chronic health condition – specifically ‘Have you tried….’
You get the idea:
Have you tried not eating after 6pm to help your blood sugars?
Have you tried to quit sugar? Completely?
Have you tried the drug they were talking about on A Current Affair the other night?
Have you tried giving up coffee? (While I don’t advocate violence, it is perfectly acceptable to respond to the fool asking this question with a sharp slap to the back of the head.)
Sometimes the ‘have you tried’ suggestions are just plain ridiculous. In last week’s OzDOC tweet chat, moderator Ms Kim came up with this beauty, asking for us to tweet how we would respond.
My take on comments like this is to roll my eyes and try to change the subject. I don’t believe there is any malice in someone making these suggestions; they really are trying to help. They want to help.
It’s what it represents that pisses me off a little. My diabetes management is not for up public tender. I manage it in a way that I see fit. I will ask if I need help. Actually, I’m not great at asking if I need help, but that’s not the point.
It is as though having a chronic health condition is a ticket for everyone to offer their ideas and suggestions. I’m fairly certain I’ve never asked people to workshop my diabetes management and I certainly haven’t sought to crowd source ideas for helping me out. And yet, it feels like it’s a public free-for-all at times!
I am sure that this is the same for people living with conditions other than diabetes. But with diabetes, perhaps because there is the link with food, and food is in the public domain all the time that people think they can weigh in. It doesn’t help that there are twits like the frequently-mentioned-in-this-blog-because-she-infuriates-me-so-much-and-is-a-dangerous-tool, Sarah Wilson, and the equally-derided Pete Evans who have mega-huge megaphones that reach a lot of people and feel that their pseudo-science programs are a good way to treat chronic health conditions. (Spoiler alert – they are not.)
For some people, the most difficult thing about living with diabetes, is the way that the public perceives the condition. While I seem to not get too hot under the collar about the public’s perception, I do understand how tiring some people get at the constant comments about diabetes, the misconceptions and how others want to get involved.
Diabetes seems to be rather unique in this sense. That public ownership of a condition that is a significant public health burden is certainly annoying at times. It’s similar to people commenting on the size of a pregnant woman’s belly (or overall pregnant body). Because it’s a bit ‘out there’ some think it’s okay to offer comment or offer suggestions. When I was pregnant, I was standing at the counter of a juice bar at the Queen Victoria Market and a man I am quite certain I’ve never met before, put his hand on my belly and told me that I was ‘a good size.’ I asked him to remove his hand and suggested that he mind his own business. Or at least buy me my pineapple juice if he wanted to get involved.
Finding ways to deflect comments without appearing ungrateful or rude can be tough. I know people want to help. But there is no curing diabetes and there is no magic potion that is going to make it better. It is sometimes a little insulting when people suggest things – especially things that are clearly straight off the snake oil shelf. Most who know me should realise that I am pretty linked in with what’s going on in the diabetes world. Do they really think that I could have missed that cure?
I (hope I) have a long life ahead of me and as it stands, that life is going to be shared with type 1 diabetes (well, at least for the next five years). I accept this and know that it is my lot in life. It would certainly be easier if people just didn’t think that it was public property and they had a free pass to comment.
I really hope I don’t sound ungrateful. Or rude…
By the way, this is how I responded to the OzDOC zinger from last week: 
Because it’s so true. There ain’t no curing stupid!
Okay folks, it’s December. And my treat to you for the next couple of weeks is to provide you with fabulous Holiday songs. (I say Holiday not because I don’t want to say Christmas, but because they may not all be Christmas Carols.) Hold on – you’re in for a ride. Our Holiday album collection is certainly eclectic!
So, today, I’m starting with one of my all-time favourite musicians, John Pizzarelli singing Let it Snow.
It’s World Diabetes Day and everyone is talking diabetes. Or so it seems.
Do we need another awareness-raising day?
Yep. We do.
We know the numbers. We know that diabetes is serious. We know that prevention is the key – prevention of type 2 diabetes (where possible) and of complications in those already living with diabetes. I could write how World Diabetes Day can draw attention to these facts.
But instead, I’ll tell you why I – a person living with diabetes – need World Diabetes Day.
I need today because it gives an opportunity to talk about real life with diabetes.
On Wednesday, (also known as ‘I hate diabetes day’) I spoke at the Austin Hospital’s Grand Rounds. Most hospitals have Grand Rounds – it is a learning opportunity for doctors and other healthcare professionals to hear presentations and ask questions about different medical conditions – sometimes outside their area of specialty.
Wednesday’s session had a World Diabetes Day focus – the lecture theatre was adorned in blue balloons and just about everyone in the room was wearing an item of blue clothing.
I gave my talk which consisted a discussion of the consumer-focused program we run at Diabetes Australia – Vic; how healthcare professionals can use social media to interact with people with diabetes and how PWD use social media to connect.
At the end of my planned talk, I looked around the room. I think my talk had been well received – I know that I am certainly different to the usual healthcare professional presenting and I also knew that the next speaker – the wonderful Professor Joe Proietto – was giving a talk on type 2 diabetes medication.
‘Just before I go, I want to say something,’ I said. I took a deep breath. ‘I hope you have enjoyed my talk. I hope that it has given you a better idea of some of the programs and activities available to be people with diabetes. I hope you are thinking about what your Twitter handle is going to be because I really want to see ALL of you in the Twittersphere next week!! But I just want to add something.’
I moved away from the lectern and stood in the middle of the stage.
‘I look okay today, right?’ I saw heads nodding around the room. ‘My dress is neat, my hair is clean. I have make up on and I know I have matching shoes on – I checked before I left the house. My lipstick is on straight. I just gave you a twenty minute talk, and I think it all made sense….I think? The words did form coherent sentences, right?’ More nods from the people in the theatre.
‘I look okay.’ I paused again.
‘But let me tell you how I am feeling. I had a terrifying hypo overnight and was awake for a good part of the night. I needed help to deal with it, and my daughter, when she woke up this morning, had to see me feeling pretty damn crap. My dad is sitting over in the corner there because I was just too tired to drive here from Brunswick, and he kindly offered to chauffeur me so I wouldn’t need to take a cab.’ I looked over at my dad and smiled. And then kept going.
‘Why did this happen? Well, I guess if we want to find a reason, we could say it was because before I went to bed last night, I didn’t check my blood sugar. You see, I just couldn’t be bothered. Now, before you think ‘how stupid’ or ‘serves her right’ or start to judge me, know that I had already checked my BGL about 15 times throughout the day and the thought of doing another BGL check was just too much for me. And I thought that I was okay based on the previous check and knowing that I had no insulin on board.
‘But you know what? It doesn’t matter why it happened and if I wasn’t telling you this now, you would never know. You wouldn’t know that I really would like to curl up under one of the seats and fall asleep; you wouldn’t know that I am still dealing with the hypo-rebound and my BGL is sitting somewhere in the mid-teens. You wouldn’t know that my arms and legs are heavy from being post-hypo-exhausted. You wouldn’t know that I kind of want to cry because today, my diabetes is other people’s problems. Not just my own.
‘Now, I’m not telling you this because I want you to feel sorry for me. I’m not telling you this because I want you to pity me because I have diabetes. It’s crap and that’s all there is to it. I’m telling you this because I want you to remember this story next time you are sitting opposite one of your patients who is living with diabetes – or any other medical condition for that matter – and they look all great. Don’t assume. Don’t ever assume that everything is all fine. Because I can tell you for sure that while I will be blogging about this to share with other people with diabetes, I certainly won’t be sitting in my next appointment telling my endo about it.’
I stopped again. The room was silent – no one moved.
‘Thank you so much for having me here today. And happy World Diabetes Day for Friday.’
I walked off the stage.
I love Joni Mitchell. And I love this song – Blue – which is, of course, perfect for today.
There are some very clever people in the diabetes world and today I want to write about the incredibly astute and hip crew from mySugr who look for innovative and fun ways to help ‘tame the monster’ that is diabetes.
I met Fredrik Debong from mySugr at the first EASD Blogger Summit where I heard about his diabetes-focused start-up and saw first-hand some of the things they were developing. Fredrik kept saying that we need to bring sexy back to diabetes – he and his team do it incredibly well! (Seriously – have a look at them all!)
Since then, I’ve been fortunate enough to meet others from the team – including Marlis Schosser, (who will forever be known as the saviour in the Pumpless in Vienna story I keep sharing in conference talks), and Ilka Gdanietz who has been at all three Blogger Summits. (Ilka is wonderful for a number of reasons, one of which is she shares my love of Nutella!) This year, Ilka gave us a sneak preview of some of the exciting things happening at mySugr headquarters. mySugr launched in the US last year and the team there is headed up by Kyle Rose and Scott Johnson.
The mySugr Companion app has been around for a few years now and I would really encourage you to have a look at it. As far as a logbook app goes, it is pretty damn perfect, and the version for kids is adorable! I guess that’s what happens when you have real people with diabetes creating tech for real people with diabetes. It just works!
But wait! There’s more.
Just this week, mySugr has launched their new initiative: mySugr Academy. The Academy will offer online training programs for people with diabetes and the curriculum has been developed by healthcare professionals and people with diabetes. The first course to be offered has been designed specifically for people with type 2 diabetes. Have a look at this teaser clip to give you an idea of what to expect.
Coming courses will be for people with type 1 diabetes.
mySugr is all about diabetes education and information, but it does it in an incredibly fun, interesting, accessible and cheeky way. It is groups like this – with a first-hand understanding of real life with diabetes – that make products that I want to use. Great, great stuff!
Monster-taming at mySugr HQ in Vienna.
My Facebook and Twitter feeds are full of diabetes awareness campaigns and it is only going to get busier in the next few days. World Diabetes Day is a global event, and around the world there is much going on to help get people talking and thinking about diabetes.
My favourite campaigns are those that strive to shoot down diabetes myths and one that is getting some well-deserved traction this week is Walk With D.
The aim of Walk with D is to help people without diabetes understand what life with diabetes is all about. But more than that, it hopes to address the misconceptions within the diabetes community too.
Diabetes myths are rife. Every day, I hear things that are simply not right about what diabetes is all about. It frustrates me; it angers me; it infuriates me – never more so than when it is coming from within our own community.
I am filled with despair when I see people with type 1 diabetes perpetuating myths about type 2 diabetes with incredibly destructive ‘type 2 bashing’. I don’t know how many times I’ve said the words ‘No one asks to get ANY kind of diabetes’, but believe me when I say if I had a dollar every time I’d uttered that sentence, I’d be wearing a new pair of Manolos almost every week!
‘Even within the diabetes community, there are levels of misunderstanding, misrepresentation, and mistaken messaging, often creating a divide where there should be a bridge.’ – Walk With D website
Help stop the stigma!
As with any successful social media campaign, it’s easy to get involved with the Walk With D campaign. Share your story and use the #WalkWithD hashtag. Make it personal and make it real. Visit the Tagboard on the Walk With D website to see what others are saying about their real life with diabetes. And share. Share. Share.
And if you need more of an incentive to get on board, Lifescan Inc will donate 100 BGL strips to Life for a Child every time the #WalkWithD hashtag is used during November. Get tagging, good people!
Everyone’s diabetes story is going to be different – the diversity of our community is actually one of its strengths! But we can surely unite in our aim to have diabetes spoken about respectfully and with courtesy. Surely we can bond over the fact that diabetes just plain sucks. Surely we can walk together with diabetes, united, with our heads held high and our arms linked.
This Friday is World Diabetes Day which is a chance for diabetes to get some much-needed mainstream attention and awareness.
There is an absolute plethora of activity this week in the lead up to the big day and, as usual, there is much online activity. Social media has the potential to reach a lot of people quickly, easily and cheaply. I’ve been involved in several campaigns in recent years and am always keen to see what clever ideas people come up with to raise awareness of diabetes around the world.
This year, one of my favourites is about access to insulin. The Access Alliance has created a Tumblr to draw attention to the fact that many people do not have easy access to insulin and other management tools, diabetes education and support. It breaks my heart that in 2014, almost 100 years since the discovery of insulin, there are still many, many people who cannot afford the insulin needed to manage their diabetes. This campaign is asking people to remember diabetes is a global issue and for some, accessing the things many of us take for granted – insulin, test strips, BGL meters – is a huge struggle.
I think about this often – in fact, every single time that I walk out of the pharmacy with my 5 x 10ml vials of insulin to load into my insulin pump. For less than $40, I have the next three month’s supply of insulin in my hands to take home, and keep safe and cool in the fridge. I feel guilty when I bitch and moan about the fact that I had to make a phone call to order in the insulin because the pharmacy doesn’t keep it in stock. Really? That’s the burden I deal with when I need insulin? I have to make a phone call and wait 24 hours before popping in to get my prescription filled. 
No one in this day and age should find accessing insulin – or any life-saving drug – a struggle.
So, get creative and make a poster. Take a photo and upload it to the #Insulin4All Tumblr. And then share it with everyone you know – not just people with diabetes. Preaching to the converted is really important because it strengthens the numbers of people advocating, but reaching out to the general community, making people aware of the issues, getting others angry at the inequity of access to healthcare is important if we are going to make change.
Diabetogenic 