Diabetes and the Online Community

Day 3 at the Australasian Diabetes Congress

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Day 3 at the Australasian Diabetes Congress kicked off today with breakfast at the Adelaide Central Markets. I was absolutely flattered that Renza sacrificed participating in the 6.45am Novo Nordisk Fun Run to join myself, Ashley and Bionic Wookiee David for the best brekky in Adelaide! 

Class convened at 9am with a symposium on diabetes technology that, quite frankly, could have gone on for hours. Diabetes Australia CEO Greg Johnson was first up onto the stage to share an update on diabetes technology, much of which I had already heard at Abbott’s DX2Sydney event back in May. 

Diabetes Australia advocated for CGM funding for high risk and high need groups, with no age limits. Advocacy had also focussed on co-payments, as has been the case with insulin pump consumables and test strips. The federal government’s announcement of fully subsidised CGM was a complete surprise and will make advocacy more complicated going forward. 

Over 9,000 people have taken up CGM since the federal government’s full subsidy launched in April 2017. I also felt slightly patriotic as Professor Johnson highlighted that our NDSS should be the universal access pathway for diabetes technologies. 

There is also a product tender of syringes, test strips and urine ketone strips currently listed on the NDSS. It is expected that lower volume items will be removed to reduce costs, with an expected implementation date of December 1. 

We are also still waiting on an outcome on the subsidy (not reimbursement!) of Flash Glucose Monitoring. A public health consultation commenced in July 2017. Despite many healthcare professionals spreading Chinese whispers that the FreeStyle Libre will be subsidised soon, a final decision rests with the department of health. This really is anyone’s guess! 

Jane Speight of the Australian Centre for Behavioural Research in Diabetes took to the stage next to present some of the research into the psychosocial issues around Diabetes technology. My takeaways were that the tech is only as beneficial as the commitment from the person using it. The studies also prove that technology won’t be for everyone. It all comes down to individual choice.

Sue Wyatt rounded out our session, pursuing the topic of how well we have closed the loop. Although not made clear, the research presented referred to clinical trials in Medtronic’s 670G hybrid closed loop system only. 

Closed loop systems automatically adjust basal insulin based on CGM readings in order to regulate blood glucose levels. The system had a blood glucose target of 6.6mmol, with a target of 8.3mmol set during exercise. This is disappointing, and I know for a fact that these targets wouldn’t be suitable for many people with diabetes. 

However, I completely get that this blood glucose target may help to get a hybrid closed loop system as such approved for use sooner. I also expect there’s a commercial motivation for this as well, with the ability to sell an upgraded or enhanced hybrid system down the line. 

The major benefit of Medtronic’s 670G was seen in overnight blood glucose levels. Interestingly, we were told that this 6 month study was only in its infancy. It leaves a lot to be said about the timing of approval for Medtronic’s 670G system (the 670G pump has been approved, the 670G compatible CGM sensors are yet to receive approval).

Congratulations to Amy Rush of the Telethon Type 1 Diabetes Family Centre, who was awarded Credentialed Diabetes Educator of the year. Go, WA! 

I was also delighted to hear that SA based CDE Jayne Lehman was also awarded an honorary life membership to the Australian Diabetes Educators Association (ADEA). Well done, Jayne! 

The day rounded out with a debate on whether diabetes technology was helpful or harmful. This was a complete letdown, given that people with diabetes were on the affirmative side and people without diabetes were on the negative side. Without technology, we’d all be living in caves!

I would like to extend a massive thank you to Diabetes Australia for inviting me to be part of the ‘Peoples Voice’ team once again this year. While they covered my travel, accommodation and registration costs to attend the Congress, they did not pay for my opinions or my time. While I certainly don’t claim to represent anyone other than myself, I hope that I have been able to bring a consumer voice to the Congress. 

My gratitude also extends to joint Congress hosts – the Australian Diabetes Educators Association (ADEA) and the Australian Diabetes Society (ADS) – for their support of Diabetes Australia’s ‘People’s Voice’ initiative. 

Finally, a massive thank you to my amazing tribe of people with diabetes that made my week so special. I feel so privileged to spend time in your company call you all friends.

It’s been an insanely busy week with long days and late nights attending product launches, networking and blogging. I haven’t even began to scratch the surface of the exciting developments that have come out of this week.

I’m homeward bound as we speak and look forward to sleeping in my own bed tonight, having a coffee machine at my disposal tomorrow morning, and spending my weekend recouperating.

Stay tuned.

Remembering My ‘Why.’

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I often marvel at just how much I’ve gained from being a part of the diabetes community.

From talking to people connected to diabetes, to being my own advocate in my diabetes care, raising my voice, asking questions, attending local diabetes events and volunteering my own time toward causes that I am passionate about.

While it’s true that diabetes, and more specifically diabetes blogging, has given me a lot of amazing opportunities, it truly is the community around the diabetes that has given me the most.

Four years ago, I knew next to nothing about diabetes. I was injecting insulin and checking my blood sugar, feeling very conscious of the people around me. I had no confidence in what I was doing. I was riding the rollercoaster, ever so helplessly.

Unfortunately the public system here in Australia, while fantastic, is geared toward clearing those clinic corridors and pushing the person with diabetes toward self-management as soon as possible. More so when you’re someone who is coping relatively better than other patients, even if it doesn’t necessarily feel that way to you.

For me, the lightbulb switched on when I first joined Twitter in 2015.

I had no clue that there was such a valuable resource in other people with diabetes available at the touch of my fingertips. I had no clue that talking to other people with diabetes was a thing, whether that be on Twitter, closed Facebook groups, Instagram, blogs, forums or something else. Those online connections eventually led to in person ones.

The diabetes community would have to be the single biggest thing that has helped me to live well with diabetes, both physically and mentally.

A great deal of what I have learned about diabetes has come from hearing the experiences of others. It certainly goes a long way in complementing the 99.9% of time that I spend outside the company of a healthcare professional.

It makes such a huge difference to know that there are others going through what I’m going through. I daresay that it even inspires, and motivates me to keep going in the daily grind that doesn’t end at 4pm on a Friday or the week before Christmas.

At the same time, I’ve also been authoring this little blog that you’re reading. Here’s the thing. I’ve always admired blogs. Long before diabetes came into my life, and also long before they were somewhat replaced by social media.

I blog for one reason, and one reason alone.

Myself.

I can’t speak for, or represent anyone other than myself through my words here.

However I do hope that through this little corner of the internet, I’ve been able to get some of that information out that I so desperately needed to find four years ago.

As I round out blog post number 500 here at Type 1 Writes, I can confidently say that this is my ‘why.’

Marvelling at the beauty of this building in Leichhardt, NSW, in the same way I marvel at how much diabetes has given me.

Overflowing.

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Being diagnosed with diabetes as a young adult came with its own, unique set of challenges. I had lived a ‘normal’ life for 17 years, and then all of a sudden I had this new condition that I had to find a place for in my life.

Nobody around me knew that I had diabetes, and it was difficult to explain such a complex condition to the people around me. In some ways, it was just easier to deal with my diabetes in private rather than having to try and explain what I was doing in the middle of another frustrating high blood sugar.

Today, I think my diabetes is pretty visible. Whether I’m talking with the pump in my hand, checking my blood sugar in the inventory office at work as someone comes to interrupt me, or walking back out again crunching down glucose tabs.

It’s fair to say that I have a pretty big interest in diabetes today. I spend a lot of my spare time writing here, freelancing over at Diabetes Daily, posting about diabetes on my social media, attending community events, as well as being part of a diabetes Committee here in Perth.

“Are you going with the diabetes group?” is now a fairly standard response from colleagues when they hear that I’m taking annual leave from work.

“What are you doing?”

“What’s that?”

I spent so long imagining people’s reactions to a finger prick or an insulin injection. Today, it often feels like they simply don’t take any notice. Those explanations of the condition that I live with don’t seem to have any effect when the same questions pop up again and again. Perhaps others are just sparing my feelings by not asking me what I am doing.

However after National Diabetes Week, it finally began to feel like those messages of awareness were getting through to the people who needed to hear them the most.

The response to my diagnosis story that was shared on Diabetes WA’s Facebook page last Sunday was phenomenal. The story that appeared in The West Australian on Thursday was absolutely huge.

Despite my repeated arguments of just how terrible that photo was, two colleagues at work pulled the newspaper out of my hands on Thursday morning, took it over to the photocopier and stuck it on the staff room wall at work. “It’s a really important issue that could affect the people you work with!”

Doing media is a really big thing, even for an over sharer like myself, but I couldn’t be prouder of the outcome.

After a big week spent raising awareness of diabetes, and hearing stories shared from fellow people with diabetes, my cup is well and truly overflowing.

This is what National Diabetes Week is all about.

itsabouttime.org.au.

Kicking off Diabetes Week with some of my tribe last weekend.

Review: Yoga For Diabetes By Rachel Zinman

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I recently had the pleasure of reconnecting with fellow diabetes blogger, yoga instructor, friend, and now author Rachel Zinman in Sydney this May.

Rachel and I first connected back in 2015 during our first Diabetes Blog Week, and I’ve since ended up with a super fan that I can’t seem to get rid of! Despite the two of us having completely different backgrounds, Rachel is one of those people who is so easy to get along with. She is so warm, enthusiastic and really takes everything in around her.

Rachel has been a massive source of support, encouragement and inspiration in my blogging and advocacy efforts. She comes across exactly as I imagined her online, which I think is a true testament to her character.

I’ve been so inspired watching Rachel’s efforts in getting her book, Yoga for Diabetes: How to Manage Your Health With Yoga and Ayurveda, off the ground. After a successful crowdfunding campaign, Rachel eventually got the attention of a publisher and has since been putting her energy into a book tour across the US over the Summer.

Since returning to Australia earlier this year, Rachel has been touring the East Coast teaching Yoga and launching Yoga for Diabetes. After asking where the best place was for me to buy the book, Rachel produced one for me from the back seat of her car.

Rachel opens the book with her own story, talking about the long hours spent in New York learning about and teaching Yoga under a mentor. After experiencing the horror of 9/11, Rachel moved back home to Byron Bay, Australia with her young family. As a health conscious person, Rachel was in disbelief upon learning that a routine blood test showed a slightly elevated hba1c at the age of 42. With a slower onset of type 1 diabetes (LADA), Rachel spent many years trying to cure herself with natural remedies before finally accepting her diagnosis and taking insulin.

The book has definitely been written in the spirit of inspiring beginners like myself that Yoga could be for me. Rachel delves into the concept of Ayurveda, which is an ancient ‘science of life.’ She talks us through the three doshas – Vata, Pitta and Kapha – which are elements that combine in our bodies in varying amounts.

Exploring the characteristics of each of these three doshas was pivotal in connecting me to the concept of Yoga. I could really relate to qualities of a Vata Dosha such as being enthusiastic, full of ideas, unnecessarily overwhelmed and thin (I already hear that more than enough!). To a lesser degree, I could also relate to Pitta qualities such as being very focussed and hardworking, while also feeling occasional frustration and burnout.

Knowing what dosha, or combination of dosha you are, is pivotal in identifying the kind of Yoga practice best suited to you. There’s a questionnaire later in the book that will give you an answer, followed by many beautifully illustrated sequences customised to your Dosha.

The book moves onto the mind, as Rachel explains that Yoga can help us to become more aware of our thoughts and get us out of our habitual need to identify with them. Especially when it comes to the thoughts about our condition, Yoga can help us to feel content, relaxed and not thinking about diabetes for a moment.

The breathing and meditation exercises illustrated in the following two chapters gave me a good idea of what Rachel was talking about in regard to the mind. Getting on the ground and practicing some of the breathing exercises left me feeling really relaxed, focussing purely on things like feeling breath moving from my chest to my belly.

So what can Yoga offer those of us living with diabetes? In Rachel’s own words:

“A simple break from the intensity of all that the body throws at us.”

“Practices, lifestyle changes and systems of thought that enable me to face this condition each and every day with a positive outlook.”

“A great friend and companion that will hold your hand through all of the ups and downs that you are bound to experience.”

Over the course of this year, self care has become a pretty big priority for me to avoid burning out (more on that soon). Knowing absolutely nothing about Yoga, I guess I was most intrigued as to whether this book might help me to find a bit more mindfulness in my life. While I don’t think I’ll become a devoted yogi like Rachel, I have found another awesome self care tool to help put my mind at ease, particularly during these short Winter days when I don’t get outdoors as often as I’d like.

Yoga for Diabetes: How to Manage Your Health With Yoga and Ayurveda is now available on Amazon.

You can also follow Rachel’s book touring adventures on Facebook, Instagram and her blog.

Diabetes Blogging 101.

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When I started writing here three and a half years ago, it was honestly more of a creative outlet to flex my Marketing and PR muscles. Diabetes sounded like something that I should write about, but I never, ever imagined that actual people with diabetes would be reading my blog.

Today, I think it’s fair to say that my blog has become a lot more than just a blog. I may or may not be classified as a diabetes social media junkie, an oversharer, a freelance writer, speaker, committee member, social networker, an advocate, a diabetes PR service or even a sellout to big pharma!

The diabetes community, both online and offline, has been invaluable to me. I am in a place with my own diabetes that I never imagined possible. I honestly owe it to every single individual that I’ve ever connected with, and every single piece of information I’ve ever been given. I wouldn’t trade being a part of the diabetes community for anything in the world (except maybe, a working pancreas…)

But at the same time, I get the impression that blogs are sometimes seen as merely something ‘nice’ to do. Or that a blogger is often pictured sitting in the comfort of their own home on a Monday morning, typing out a fresh post and then going about their leisurely day.

Blogging is a fairly big investment in the subject area you’re writing about and the cause you’re advocating for. Keeping on top of all of the news, developments, tools and technologies forms a pretty big part of my life. And hey, it also keeps me pretty motivated in wanting to better manage my own diabetes. I do not have a technical or scientific background. Yet as I hear myself talking enthusiastically to others, I realise just how much I have immersed myself into a very technical and scientific world.

There’s a pretty big investment of my own time. Whether it be writing my blog, taking part in advocacy work, responding to e-mails, networking or embarking on diabetes travel, it’s all done in my own time. Evenings. Weekends. Sometimes out of my hard earned annual leave. Often at relatively short notice for the responsibilities and full time job I’m leaving behind that pays for the pancreas that doesn’t work properly.

There’s also a pretty big responsibility in advocacy. When companies choose to speak to people with diabetes, I believe that’s a good thing. While some might see it as accepting tokens from ‘big pharma,’ I see it as a responsibility to tell them what’s important to people with diabetes. While trying to be mindful of my privilege.

I’d also be lying if I said that I didn’t feel a sense of obligation to the community that has given me so much. I know full well that I am a highly privileged person, and that I don’t represent all people with diabetes out there in the world. A mere four years ago, I was in a relatively isolated place with diabetes. I guess a big part of my ‘why’ is to help other people to discover the power of peer support and being engaged in the diabetes world.

For me, the biggest reward that has come from diabetes blogging is all of the amazing people I have met. My tribe of people who have diabetes feel like somewhat of a close knit family. I often arrive home after some amazing conversations with a cup that is overflowing and a newfound motivation.

Diabetes has made my world a lot smaller, and being part of this community always makes me feel that I am a part of something much, much bigger.

One of the occasional perks of diabetes travel…