real life with diabetes
MIMI
I’m Mimi.
Daughter. Sister. Granddaughter. Friend.
Wannabe vet & farmer.
Frustrated horse rider.
Reluctant pianist.
Enthusiastic singer.
Elegant ballerina.
Thrill seeker.
Animal lover.
Trainee pancreas.
Which is the last thing you need to know about me. Because I’m not just a T1D diagnosis.
I’m a 10yo girl.
Diabetes Tales is a new thing I’m trying out at Diabetogenic. If you’re interested in taking part, let me know!
When there is a lot going on in any aspect of life, the KISS principle makes a lot of sense. And given that when I’m busy, I often get stupid, keeping things simple is a really good idea.
At the moment, I am just waiting for one or more of the balls I have in the air to crash to the ground. In the meantime, I’m trying to simplify things to manageable levels.
While that may mean taking some shortcuts – preparing extra portions when cooking so I can make one meal stretch to two or saying no to things I’d ordinarily say yes to – I’ve learnt that paring things back to the absolute minimum is sometimes incredibly refreshing.
In an endeavour to ensure that I am able to manage just the basics of my diabetes management so I am happy and don’t feel like I’ve dropped the faulty-pancreas ball, I have really cut back. The necessities don’t go (insulin gets delivered; BGLs get checked etc.) but the extras do get put on hold for a while. The post-meal BGL checks are not as frequent and I made the decision to not wear my CGM for the moment because I wasn’t doing anything with the data. I dealt with any alarm by silencing and ignoring it; not acting to remedy what it was telling me was wrong.
So what does this mean? Well, my average BGLs are probably going to be higher, and the variance between my higher and lower readings will be greater. As a result, my next HbA1c is probably going to be less impressive than the last.
But I am not feeling overwhelmed and I don’t feel like I am failing diabetes. I have made a conscious decision to dial back on my usual level of care to something that I feel that I can achieve. While my diabetes care may be less, my mental health hasn’t really taken a beating. It means that I feel okay about my diabetes and okay about my wellbeing. I suspect that the result of not cutting back may have been both falling in a screaming heap.
Keeping it simple keeps me in line; it keeps me content and it keeps me happy. Win, win. KISS KISS!
There have been many phases in the nine year old kiddo’s time, some more enjoyable than others. The Yo Gabba Gabba time was definitely not a favourite, however I was sad to say goodbye to the Charlie and Lola stage.
Now, the beautiful work of Hayao Miyazaki and Studio Ghibli is on high rotation and this is one stage that I am more than happy to live through. There is much to love about these beautiful films and their often challenging themes make for very interesting conversations afterwards.
A couple of weeks ago I treated the kidlet to tickets to the Melbourne premier of the latest Studio Ghibli film, The Wind Rises. It was gorgeous – as expected – with breathtaking scenes (clouds! The clouds are always so beautiful) and an aviation theme that was captured beautifully. Without giving too much away, one of the lead characters has tuberculosis. It got me wondering if there were any anime characters with diabetes.
If I was the creative type and could draw an anime character, I would create a girl or boy with diabetes and tell their story with this beautiful artform. But I can’t. However, there’s an app for that – or at least an anime generator.
So today, I did this! And there, hanging from her waist is her insulin pump. She’s thinking about eating a cupcake, by the way.
It’s Friday evening and the end of a busy week.
But before arriving home for an early night of not-very-much, I detoured to one of my favourite cafés, Marios, for a DOC meet-up.
Coming together, a few regular OzDOC-ers, a GBDOC-er we’re now calling one of our own and a delightful representative from the South African DOC.
Thanks, Twitter, for bringing us all together!
ASHLEY
I felt my life shatter when I was told I had diabetes. I didn’t know much about it then, and felt so alone, scared and broken. It took me a long time to accept it and find beauty in cracked glass from the Diabetes Online Community.
You can read more from Ashley at her blog, Bittersweet Diagnosis.
Diabetes Tales is a new thing I’m trying out at Diabetogenic. If you’re interested in taking part, let me know!
I’m addicted to a new app on my iDevices. It’s called Fotoffiti and it’s probably best I don’t think about the time I’ve wasted spent on it since I uploaded it last week.
Cleverly, the app turns photos into stencil art – all Banksy-esque. For someone with my considerably lacking artistic talent, this is nothing short of brilliant! The kidlet has been having a great time using it too, with our cat being stencilled to within an inch of her nine-lives.
So, today, I give you the diabetes edition. Here are some of my everyday diabetes things all Blek-le-Rat-cool.
Also, here is a non-diabetes thing (to be printed and stretched onto a canvas for the kitchen):
And this is what I look like as a stencil:
Okay – I’m going to stop now….
Fotofitti can be downloaded from the iTunes store. But be prepared to lose hours of your time if you fork out the $0.99.
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)
Swimming, breakfast, shopping: a typical Saturday morning.
A waking BGL only slightly higher than usual reminded me it was time to change my pump line, so after my shower, a shiny new line went in and the day started. Diabetes task one done for the day and in the frantic manner of Saturday mornings, I didn’t think about it again.
When I finally stopped to get something to eat, I didn’t check my BGL. Rookie mistake number one, except I’m not a rookie – just a busy person who, in all honesty, couldn’t be bothered seeing a number on a machine. I bolused for the carbs in the milky coffee and toast and ticked off another diabetes task for the day. Off I went.
I was standing at the register of a store in the city when the nausea hit. It wasn’t a wave so much as a tsunami. I knew I had to get out into the fresh air as quickly as I could.
I got into the car, found my meter and checked my BGL to see a lovely number in the mid-twenties staring at me. Still thinking clearly at this point, I grabbed the emergency syringe I keep in my diabetes kit and drew up some insulin and jabbed it into my stomach.
I got home before the vomiting started.
And then, I attended to the cause and went through the mental checklist trying to find something – anything – to make sense of the sudden spike. I was sure I’d bolused for the food I’d eaten which my pump bolus history confirmed; I was coming down with a cold, but surely there was no way that could have sent my BGLs so high so quickly; I checked for ketones and saw a number that didn’t startle me too much; I looked down at new line….and there it was. The tell-tale red at the top of the where the canula entered my skin. I ripped it out and blood gushed everywhere. Blood in the line, I thought to myself, as I tried to stem the flow. I thought about how dramatic it sounded.
New line in; a temp basal rate set; glasses of water; an hour of sleep; extra BGL checks through the rest of the day to avoid the plummet. And the feeling of being hit by a bus.
It was a typical Saturday morning. With diabetes in the mix.
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.
Diabetogenic 
