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The other day, I visited my daughter’s classroom because she wanted to show me some work she had on display. This term, the class has been speaking about healthy minds and bodies and one of the activities was to draw a poster about a magic medicine of their own invention.
There was hers: colourful and bright, beautifully drawn, neat handwriting. This cure-all had the ability to get rid of pimples, chicken pox and under-eye bags. All by just adding water! Her medicine comes in a variety of flavours and offers a money back guarantee if you are not satisfied with the results. Also, it is recommended by doctors. And Prince Harry. Don’t ask – I couldn’t even hazard a guess why!
I was chuckling away at the before and after pictures she’d drawn (I think that the developers of this particular preparation are more Ponds Institute rather than CSIRO) when I saw something extra she had added.
There, in a break out box was an extra special cure. This magic medicine will also cure diabetes – type 1 and type 2 (she’s nothing if not inclusive). I looked at it and smiled, my heart breaking a little. No other kid had added anything about curing a parent’s broken body. But my little girl had. Because diabetes lives with us and she would like to be able to fix it.
So she did. In a magic medicine of her own creation, she cured diabetes (as well as the dark circles under my eyes). All this with Prince Harry’s endorsement. What a kid!
It’s Friday! Here’s some The Eastbeats for your listening and dancing pleasure!
Next month, it will be 16 years I’ve lived with diabetes (in case anyone is looking for gift ideas, wax or peridot are the suggestions). And as someone who at the best of times has a memory like a sieve, I have some trouble remembering much before my diagnosis. It was a long time ago, my life looked very different to now and I was a very different person. But there are some things that I miss…
- I miss my stomach not looking like a pin cushion
- I miss walking around the house with little on not having to worry about getting infusion sets caught on door handles
- I miss not knowing about carbohydrates
- I miss not having to stick fingers with a lancet dozens of times each week
- I miss drinking a glass of juice without considering the graph on my CGM
- (I miss not knowing what a CGM is)
- I miss not worrying about long term health complications
- I miss not feeling guilty about numbers, food, my actions
- I miss being able to leave the house with a tiny clutch bag
- I miss suitcases without diabetes supplies
- I miss knowing nothing about diabetes
- I miss not thinking about how what I was eating/doing/drinking/thinking impacts on numbers
- I miss stress just being stress and not meaning a spike in my BGLs
- I miss feeling healthy – or at least being seen as someone who lives with a health condition
- I miss not being different to my sister
- I miss not worrying that my sister will also get diabetes. And while my daughter wasn’t born when I was diagnosed, I miss the possibility of not having to worry that my daughter has inherited my faulty genes.
- I miss never being hypo
There are many blessings that have come from being diagnosed with diabetes – pancreatically-challenged friends, a great job, travelling the globe talking about diabetes. All of those things – I’d miss them terribly. But diabetes? No. That is the one thing that I wish I could miss.
What do you miss about your life before diabetes came along? Are you too young to remember?
There has been a lot of hoopla on social and mainstream media about a mum who posed in a crop top and shorts, surrounded by her gorgeous three young boys, showing off her body, with the words ‘What’s your excuse’ emblazoned atop the picture.
The image is lovely (they’re all in red; Photoshop in a couple of reindeer ears and a Santa hat and she could use it for her 2014 family Christmas card). But what is not so lovely is the accusatory and more than slightly judgemental text that comes with it. What’s my excuse for what? I’m not really sure what she’s asking. Is she asking what my excuse would be for not having a body like that? That’s an easy one to answer. I don’t like exercise and just the thought of doing sit ups makes me want a bacon sandwich. Also, I don’t care. And also, I don’t particularly see that I need an excuse for looking the way I do look. Or don’t look.
Can you imagine if I put up a photo on this blog of me surrounded by the things I do (family, friends, work, baking cupcakes, eating cupcakes, going to music gig, drinking coffee, writing, watching ‘House of Cards’, enjoying the latest anime movie at home with our nine year old, dancing around to Billy Bragg*) holding a lab result with an A1c of 6.5 per cent with ‘What’s your excuse?’ above my head?
My A1c is not 6.5 per cent right now, and quite frankly, I don’t look for excuses as to why that’s the case. But even if I was sitting in that sweet spot, it’s not my job to question others as to why they are not. It’s none of my business and it also promotes that ridiculous idea that as long as my A1c is in target then I’m a success.
I think of the times when my A1c has been what is considered ‘perfect’ and I know that it hasn’t signified that I’m winning at life. Or even diabetes for that matter.
When I was pregnant (with my daughter as well as other times when I miscarried) my A1c sat in the mid 5s – low 6s. But I was checking my BGLs every 20 minutes and any result above 8mmol/l had me in tears as I worried about what I was doing to the developing baby. I would panic as I waited for my A1c results, fearing a number that would suggest I wasn’t being the best mum-to-be I could.
Periods of extreme stress when I don’t eat much also result in much lower A1cs, but the stress and anxiety I’m experiencing don’t really suggest to all else in my life being great.
We can’t point to a number (whether that be a diabetes number or a number on the scales) or how we look in a crop top as a measure of success.
I am all for celebrating people’s successes. I love it when my friends with diabetes have been really working hard at reducing their A1c and tell everyone about it. It’s great news and it should be celebrated. But that’s because it’s about them and what they have done. Not about why others are falling short.
Enough with the judgement folks. You want to rejoice in something you are proud of – knock yourself out! I’ll celebrate with you. Just don’t do it at the expense of others.
*It’s Friday. Dance around to Billy Bragg!
I tell my story for many reasons – most of them selfish. Plus I’m an over-sharer and I like the sound of my own voice (in my head, for real, in 140 characters or less and any place people will listen to or read me).
But more than that, I tell my story (here, in social-media land, in interviews, at conferences) because I am trying to connect with others. I want to know how YOU deal with days you can’t get your BGL above 3.5mmol/l despite mainlining glucose (or the days you’re high for no reason and are shoving insulin into you like there’s no tomorrow).
No one has diabetes all worked out and no one is a pin-up child for this stupid condition. But everyone has their own story which is real, honest and something they are trying to make sense of. Everyone has tips and tricks and ways to make diabetes more manageable. Everyone has tales of soaring highlights and terrible hardships. But not everyone wants to share them.
I am so blessed to be surrounded by friends who live with diabetes. Just walking into my office means I have an in-real-life support group of people with diabetes (see below). My gorgeous friend Jo is also my two-doors-down-neighbour. We have been known to share meters, strips, pump supplies and insulin. (We also tried to get our endo to buy the house in between us when it was up for sale, but for some reason she didn’t like the idea. Perhaps it could have been the suggestion that we remove the back fences so we could pop in for private consults whenever we felt like it.)
This is not, I now know, typical. The number of times I’ve met people with diabetes who act a little overwhelmed because it’s the first time they’ve been in the same room as another PWD. I know what that feels like! Even though I’m surrounded by people with diabetes, I still can’t help but get excited when I meet someone new with a faulty pancreas. DO YOU HAVE DIABETES TOO? SO DO I! HOW LONG HAVE YOU HAD IT? IS THAT YOUR INSULIN PUMP? HOW LONG HAVE YOU BEEN PUMPING? CAN WE BE FRIENDS NOW FOR EVER AND EVER AND EVER AND SHARE STORIES OF MIDNIGHT HYPOS AND THINGS THAT HAVE NOTHING TO DO WITH DIABETES TOO? is how I say hello. Once, I had to be restrained from throwing myself across a table at a café when I saw a man pull an insulin pump from his pocket to bolus for his morning fruit toast and coffee. ‘He may not want to talk about diabetes with you, Renza’, I was told. My response? ‘Of course he does. He just doesn’t know it yet.’
But the truth is that sometimes people really don’t want to talk about it with others. They hold their diabetes cards very close to their chest (I hold my insulin pump close to mine) and are not inclined to give out every private detail with complete strangers (or even their closest friends).
We need to make sure the quiet ones have a voice too and that the loud ones (that’s my hand you see waving in the air) are not seen as the only ones whose stories count.
You don’t need to be out there with your diabetes to have a voice. There are ways that you can silently make a difference. I just hope that everyone realises that their story and their voice is important and significant. And I also hope that no one thinks that reading the stories from the over sharers like me means that we have it all worked out. I know I don’t. And that senseless 18.9mmol/l my meter just threw at me after a lunch of no-carbs proves just that!
Today in the office…..
There is a wonderful website I love called ‘Humans of New York’. It showcases the work of Brandan, a NYC-based photographer who tells the stories of people on the streets of New York and accompanies their words with gorgeous photos. I love it for a number of reasons. The stories are all beautiful and run the gamut from gloriously joyful to tragic and tear-inducing. Also – New York: what’s not to adore! There are ‘Humans of….’ blogs and projects from other cities too now – Melbourne has our own.
There’s an intimacy and openness to Brandon’s subjects as they share what’s on their mind at the moment he takes the photo, or tales of things that have happened in their lives.
I’ve always loved hearing people’s stories. I ask a lot of questions of people in an endeavour to get to know something that isn’t at the surface. Finding out what explains people – what makes them tick, get excited, saddens them – is a privilege and a joy.
Reading blogs gives the same insight and it also connects me to the writers. Diabetes blogs by others help me understand my own diabetes story better. And I blog in the hope that my stories do the same for others.
So – I’m starting something new. Every now and then, I am going to ask one of my friends with diabetes to send me a photo and a sentence or two about their diabetes week or something about their life with diabetes. I haven’t got a catchy name for this yet, but suggestions are greatly appreciated.
If you’d like to participate, get in touch using the contact me button at the top of my blog.
So – for today, I’m asking Eliza to kick it off this new project.
Where was your last overseas holiday?
My last trip was to Japan. It was unbelievable. Having diabetes didn’t stop me tasting every food I could find or having a go at every slope on the mountain. The most tiring part was digging my skis up out of hip-deep powder every time I fell over.
Someone said to me yesterday that it seems that I only ever eat doughnuts and Nutella. Or doughnuts with Nutella. This was in response to a photo I posted on Facebook which showed the kiddo and a couple of her friends being shown how to make Nutella spring rolls*. Actually, it was in response to most of the photos I post on Facebook which may or may not be of doughnuts and Nutella. Whatever!
People seem to love pointing out what they consider to be the irony of a person with diabetes having such a strong love of fried sweet dumplings. It’s possible that the happiest day of my life was the day I discovered Doughnut Plant in New York.
But there’s no irony as far as I’m concerned. I love a good custard bomba, sugar-coated zippoli or jam-filled doughnut. And I have diabetes. And I have an insulin pump and I know how to use it! I must have missed the day at diabetes school where we were told we couldn’t eat doughnuts.
We are told that there is no such thing as a ‘diabetic diet’, yet the mixed messages we receive about what we ‘should’ and ‘should not’ be eating only lead to judgement and accusatory questions such as ‘should you be eating that?’ The stigma associated with diabetes and the media’s misrepresentation of all people with diabetes as overweight, lazy, fast-food-guzzling machines perpetuates the myth that food for people with diabetes should be cardboard-flavoured and devoid of any enjoyment.
Well I say screw that!
For the record (and in a pathetic-and-less-than-half-arsed attempt to justify my eating habits), I actually do enjoy an incredibly healthy diet. I cook most days and there are always lots of fresh vegies and lean meat on my plate. But there is no fun in posting a photo of chicken paillard with rocket, avocado and walnuts. As delicious as it may be.
Today is Mardi Gras and whilst I can’t be in New Orleans to join in Fat Tuesday celebrations (if only!) I will be thinking of beignet – the pillowy, fried and sugary doughy delights that I enjoyed in great quantities at Café du Monde when I visited the great NOLA last year. And at some point today, I hope to have one or three (with a side of insulin), sprinkling icing sugar down my front as I wave a handkerchief, walking the second line as Melbourne celebrates Mardi Gras in our own way.
Also – here you go! Some Disney and Dr John magic for your Tuesday.
Nutella Spring Rolls
Add a dollop (about a teaspoon-full) of Nutella to the middle of a spring roll or wonton wrapper
Fold in the sides and then roll into a cigar shape
Seal edges with egg
Fry in vegetable oil
Sprinkle with icing sugar and eat while hot
Enjoy
Bolus as required (either using a pump, pen, syringe or working pancreas)
I first heard of the International Diabetes Federation’s (IDF) Young Leaders in Diabetes (YLD) Program when I attended the World Diabetes Congress in Dubai in 2011. There, I met some of the young leaders and heard about the program’s aims and intentions.
Alex Silverstein at the opening ceremony of the World Diabetes Congress in Melbourne last December. He’s usually less elaborately painted up!
I knew just how valuable and important this program would be when I first met Alex Silverstein in Chicago last year. Alex was the first President of the YLP and I could see why he had been selected to take on this role in the program’s early years. He’s smart, dynamic, passionate about the cause, funny and just a downright nice guy – I’m blessed to call him a mate. I’ve been lucky enough to meet up with him again at other conferences, including in Melbourne where he handed over the presidency to the equally awesome Keegan Hall.
In the lead up to the World Diabetes Congress in Melbourne last year, the YLD representatives spent some time together working with diabetes advocates and HCPs for their Leadership Training. They discussed global diabetes issues, how to effectively communicate and advocate were covered. I was invited to attend the session on social media use and was amazed at the enthusiasm and commitment in the room. The program involves 132 young people from 70 countries around the world, each with a different story about life with diabetes.
We need advocates with strong voices and the IDF should be commended for bringing together this group. Under the direction of Debbie Jones and Paul Madden and a smart and dedicated faculty, this program provides a voice for young people living with diabetes from around the world, many of whom would otherwise not have the opportunity to tell their stories and advocate the needs of their peers. Many are focusing their energies on highlighting issues such as access to insulin in countries where this life-saving drug is considered a luxury and the associated costs prohibitive.
The Aussie YLD contingent (plus an old bag).
Our Australian representatives on the YLD program are three of the most intelligent young women I’ve had the pleasure to meet. Ashley, Stephanie and Rachel did us all proud in Melbourne at the IDF Conference. They continue to be advocates for young people with diabetes in Australia through the YLD Program as well as the Diabetes Australia Young Leaders Program. Ashley is a regular blogger and has recently been involved in setting up a Facebook page to bring together young adults with type 2 diabetes.
See some of the young leaders in action in this great new video.
On Saturday night, before delving into the craziness that was White Night, I attended the launch of a terribly exciting new resource. Enhancing Your Consulting Skills; supporting self-management and optimising mental health in people with type 1 diabetes is described as an ‘education resource for advanced trainees in endocrinology and other interested health professionals’. That’s right. It’s written for health professionals who will be working with and for people with type 1 diabetes. 
I attended with a dear friend who shares my pancreatically-challenged state. We also share the same endocrinologist – one of the collaborators on the resource – and were there at her invitation. We know just how lucky we are to see an endo who understands self-management, ‘gets’ the fact that burnout happens and doesn’t have a judgemental gene in her body. We know that having an endo who we can email in between appointments is a privilege we would never abuse. And we know that living in the inner city means that we have access to healthcare that many others can only hope for.
Hopefully, this resource will mean better education of new endo trainees and that the care we are so fortunate to receive will be available to many more people with diabetes.
This resource is a huge step forward in medical education. It is the first time that the needs of people with type 1 diabetes have been directly addressed with a strong focus on self-management and mental health. As Professor Alicia Jenkins highlighted in her speech, people with type 1 diabetes spend, on average, three hours per year with their healthcare team. The remainder of the time we’re doing it alone. There is no treatment option other than self-management and an understanding of how HCPs can support that is critically important.
Endocrine trainee, Michelle, gave a candid speech how she has come to view people living with diabetes. She said that when she first started attending a young adults with diabetes clinic, she was frustrated and said that she blamed her patients for not getting the results she expected. This honesty was refreshing and it was so pleasing to hear how she now knows to focus on the positives rather than negatives when working with PWD.
Dr Jennifer Conn gave a warming speech about how she never stops learning from her patients. This humble attitude is one of the reasons that this book is so well written. It acknowledges the expertise held by the person who lives with diabetes and knows their condition better than anyone else possible could.
I looked around the room and saw that there with the glitterati of the diabetes HCP world, were some of the pancreati – the people with diabetes who the book was written for. It’s a tribute to the writers and organisers of the launch event that people with diabetes were invited.
I’d like to congratulate the team who have put this together, and the NDSS for supporting the development of the resource. This is a win for people with type 1 diabetes and I can certainly see similar volumes being written for type 2 diabetes and, indeed, other chronic health conditions.
At the end of the event, I wandered back out onto the Melbourne streets, waiting for nightfall when the city would light up and fill up with hundreds of thousands of people. I looked at my friend and thought how lucky we are – a night of Melbourne brilliance kicked off with hope for a better future for people with diabetes.
Disclaimer
One of the collaborating writers involved in this resource is my endocrinologist. I was asked to provide comment on some sections of the book and my photo and a screen shot of this blog are included in the final book. I did not receive any payment for any of this involvement.
The development and printing of this book were funded by the National Diabetes Services Scheme (NDSS) which is administered by Diabetes Australia. I am employed by Diabetes Australia – Vic.
I couldn’t be more excited to receive this in the mail today:
And I couldn’t be more proud of the wonderful Kerri Sparling who I am lucky enough to call my friend.
Run, don’t walk, to order your copy of Balancing Diabetes now!
Today is Diabetes Art Day. The last time I took part in Diabetes Art Day was in 2012 when, instead of making art, I looked at it. We were in Rome and spent the day wandering around the Sistine Chapel. But this year I decided that it was time to actually produce something. I’m not a great artist. In fact, our daughter overtook my drawing abilities when she was about…oh, maybe 12 months old. However, Diabetes Art Day isn’t about producing perfect works of art. It’s about thinking about how diabetes can be represented in ways other than words (I kinda missed the brief as you will see below).
So in an endeavour to do something quiet and cool (and indoors) to escape yesterday’s sweltering heat, my family sat around our kitchen table and made some art. Out came coloured paper, crayons, textas, colouring pencils, stencils, stamps and anything else in the craft basket that looked like it might be fun.
And then we drew and collaged and stamped. I decided to use lots of different colours and place the blue circle over the top. I liked the idea of a rainbow-esque kaleidoscope of bright and not-so-bright colours because to me, that’s how diabetes is. And while the elusive pot of gold at the end of the rainbow may be a cure, there is still hope in between even if we never actually find it.
Hope. For me, there always needs to be hope….
And the kiddo and Aaron came up with these gorgeous pieces.
Is that a Twitter bird I can see?
More colours and a blue disc of hope.
So, here is our family’s contribution to Diabetes Art Day. I’m going to frame the pictures and put them up in my office so that I can be reminded that sometimes it helps to look at diabetes in a different way.
Postscript:
And then I got a little carried away with the stamps and did this:
Follow Diabetes Art Day on Twitter: #DArtDay
Diabetogenic 