Not So Invisible

“I have type 1 diabetes and I use an insulin pump which should be covered under my policy. I’ve just received a letter stating that my warranty will expire in March next year, and just want to make sure that a replacement one will be covered.”

“Insulin pump. Insulin pump, insulin pump.” I was waiting for a while as the gentleman I was on the phone with searched through the finer details of my policy. As he began reading out a list of things that were covered under my policy, I was convinced he had no idea what he was doing.

“I just want to make sure I get the right information for you. I know about insulin pumps because my daughter was diagnosed with type 1 diabetes at the age of nine.

“Small world!” I replied.

She refuses to go onto an insulin pump. She’s quite happy doing lots of injections of Novorapid.

“Well, there’s no right or wrong way when it comes to managing diabetes. So long as she’s happy.”

Is it well controlled? Are you doing all right with it?

“Not every day is perfect. But I’m happy with how I’m doing. The pump and CGM have been life changing for me.”

For so many years, diabetes felt like an incredibly isolating condition to live with. I rarely acknowledged it, rarely felt comfortable with it, nor did I know a single other person with it. I felt like nobody could see my diabetes, nor did I even contemplate the possibility of there being other people out there who were just like me.

Today, even in a world of knowledge and connection, these moments of diabetes in the wild don’t seem all that difficult to find.

As it turns out, I probably just wasn’t looking hard enough.

Patience

Last week, I went along to Diabetes Research WA’s event on World Diabetes Day, where the recipients of two Western Australian research grants were awarded.

Being a person living with diabetes is much like a kid waiting for Santa Claus to come and deliver presents on Christmas Eve. I spend more of my time thinking about what it will be like getting my hands on that cool piece of diabetes merch that I’ve been eyeing online, fantasising about using a shiny new piece of diabetes tech, or dreaming of that cure that’s only another ‘five years away.’

It’s safe to say that my patience has been worn thin after almost a decade of doing the same thing each and every day. I don’t really give a lot of thought to all of the logistics that go into getting those prezzies into the kid’s stocking come Christmas morning.

As someone with type 1 diabetes, former grant recipient Aveni Haynes’ presentation on her association with the ENDIA study really spoke my language. This world first study has been following babies and children who have a first degree relative with type 1 diabetes, this week surpassing the 1,500 mark. The study has identified antibodies that these children develop at a young age, which seems to be an indicator of the child being at risk of developing type 1 diabetes at some point in the future. Interestingly, the study has utilised the yet-to-be-approved in Australia Dexcom G6 CGM. It was also rather funny hearing Dr Haynes express guilt over asking these children to have to prick their fingers twice daily to calibrate the former iteration of the Dexcom system!

I think this would be my third or fourth time attending the annual research reveal event, and the team at Diabetes Research WA have continually worked to incorporate feedback into each and every one. This year, the recipients of the two $60,000 research grants were asked to share with the audience their career background that led them to being awarded a research grant, and what this meant to them.

I still don’t have a lot of faith in a cure for diabetes, but I definitely walked away with a much greater appreciation for diabetes researchers. Their work might not necessarily include me, but they’re definitely making a difference to the lives of many people living with diabetes, probably in not so much of a privileged position as me.

My patience may have worn thin a long time ago, so I am grateful that diabetes researchers don’t have the same level of patience that I do.

If you’re a Perth local, keep an eye out for Diabetes Research WA’s events that typically coincide with National Diabetes Week in July and World Diabetes Day in November.

Thanks, Simon.

Last night, I ventured down to City Beach after work to meet a guy called Simon. I’ve only ever known of Simon through Facebook. Some of my friends with diabetes have been encouraging me to connect with him for quite some time. A friend linked me into the Facebook community that he operates earlier this year, and I’ve been lurking for months and months, well aware of the life changing difference he’s been making to people with diabetes. In September, I finally bit the bullet and realised that life changing difference for myself.

Simon rebatteries used Dexcom transmitters. In fact, he’s rebatteried over 700 of them, which have been kindly donated from around the diabetes community here in Australia. The transmitter is a vital part of a Continuous Glucose Monitoring system. Sitting on top of the sensor, it sends blood glucose readings to smartphones every five minutes via a Bluetooth connection.

Of course, none of this comes cheap. A brand new transmitter retails for $550, and only lasts around three months before it automatically shuts off. Through a Facebook community called ‘Diabatteries Down Under,’ Simon actively helps people looking to lower the cost of their CGM by supplying them with rebatteried transmitters (that, might I add, last much, much longer than brand new ones do).

Now, Simon doesn’t actually have diabetes, but you wouldn’t know it from talking to him. He’s a massive advocate for CGM, likening finger pricks to flying blind. He was full of unconventional tips and tricks to prolong the life of my Dexcom sensors, and the way he whipped things out could give Bionic Wookiee a run for his money. He also has a day job, on grounds for which he was visiting Perth this week. And he’s a pretty big fan of DIY looping, too.

When the partner of Simon’s daughter moved into the family home, Simon began learning about this young man’s diabetes and the $7,000 price tag attached to the Continuous Glucose Monitoring system that he used. The rest is history.

I thanked Simon for his generosity, maybe more than once, and I was only met with even more. Simon is motivated purely by being able to help others to better manage their diabetes, and even encouraged the small group of us to put anyone who was in real need of CGM in touch with him. You wouldn’t do that if you didn’t have such a personal connection to diabetes.

Personally, I think this sends a pretty big message to the powers that are behind the manufacture and sale of CGM. Sadly, I don’t think we’re going to see any (positive) change on that front.

Thank you so much for doing what you do, Simon. You’re an absolute legend.

N.B. Simon provided me with a rebatteried Dexcom transmitter for a nominal cost. Like everyone else choosing to use a rebatteried CGM transmitter, I am doing so at my own risk and void all warranty and support on the product.

My Diabetes Family

Family. What would I do without them.

My own family have provided me with an exceptionally solid grounding to be able to live with, and manage my diabetes, really well. They have gone above and beyond to provide me with everything I need to manage my diabetes really, really well. A blood glucose meter, test strips, insulin, jelly beans, private health insurance, an insulin pump, consumables, food on the table, a roof over my head and good values, to name a few.

Sure, as I’ve grown older I’ve shouldered a great deal more of these responsibilities, but Mum and Dad have helped me out significantly. And have always made it clear that if I ever need some assistance, that I can come to them.

They respect my boundaries when it comes to managing my diabetes independently – and I know how hard that must be. I can’t imagine how they would feel watching me stare intensely into my pump, hearing the clicks of a lancing device, or casually placing a few orange glucose tabs into my mouth mid conversation. I can only liken it to my own feelings when I see members of my own family unwell – and I know I don’t like that one bit.

They’ve supported this blog, my diabetes adventures and taken an interest when I come home eagerly talking about what I got up to or what I have learned.

Over the years, I’ve also been lucky enough to find a second family of people. They’re affectionately known as the DOC in my mind (and that’s ‘doc’ and not ‘D-O-C’), but definitely spans the broader diabetes community as well.

When I first began actively using Twitter a few years ago, I never would have guessed that diabetes would become such a big part of my life through the people I’ve linked up with locally, interstate and even globally. People with diabetes, and people supporting other people with diabetes. I am so grateful for your conversations and your insights that continue to broaden my perspectives on diabetes and challenge my thought processes.

Largely, my diabetes family are the people who simply ‘get’ it. The people who are walking the same path that I have. The people who I can message, knowing that they’re probably thinking exactly what I am thinking. The people who have inspired me to continue to manage my diabetes in the best way that I can. The people who have made the great big world around me much, much smaller.

It’s World Diabetes Day, and this year sees the second of a two-year focus on the role that families can play in supporting a person with diabetes, from both Diabetes Australia and the International Diabetes Federation.

Cheers to #mydiabetesfamily.

Happy World Diabetes Day.

‘Tis the Season.

For any resident patron of the DOC, November 1st signals the beginning of Diabetes Awareness Month.

Diabetes month technically isn’t a part of our calendar here in Australia. We mark World Diabetes Day on November the 14th with the rest of the globe. However, technically our National Diabetes Week is observed every July.

Yet undoubtedly, it will still be pretty hard to avoid my social media feeds turning blue. Companies and orgs in the diabetes space will be launching campaigns to commemorate the occasion and raise awareness of their role in supporting PWD. Amplification of diabetes awareness throughout the DOC and beyond is guaranteed. It will be hard not to feel obligated to join in with the DOC and spread some diabetes awareness of my own, too.

Diabetes month usually culminates on World Diabetes Day on the 14th of November, the birthday of Sir Frederick Banting. Banting discovered insulin, along with Charles Best and John MacLeod, the hormone that went on to save the lives of millions of people with diabetes around the globe.

World Diabetes Day always gives me a nice, warm fuzzy feeling, leaving me feeling united with my diabuddies near and far. In recent years it’s involved a 24 hour World Diabetes Day Twitter chat, checking in with some of my #OzDOC friends around the country, Diabetes Research WA’s annual ‘research reveal’ event, and time in the company of some of my tribe.

Above all, my friend Emily Vuong, who is one truly amazing diabetes instagrammer (@emilysdiabetes), will be running the New York Marathon this weekend and raising funds for JDRF Australia. Please throw your support behind her if you can.

In the midst of all of this amazing stuff, I still feel the need to remind myself that as a person with diabetes, every day is diabetes day. Every month is diabetes month. I have to turn up to manage my diabetes every single day rain, hail or shine. I invest a fair chunk of my spare time into diabetes, year round. I don’t have to go to any extraordinary lengths to raise awareness of diabetes, even though I probably will.

My next couple of weeks largely involve studying for final exams, ahead of a much needed break from uni for the Summer. I expect I’ll still be checking in here, as time allows.

So however you choose to spend November, just know that your worth as a person with diabetes is not a reflection on how much diabetes awareness you wish to raise.

Happy November.