Month: November 2019

Living with diabetes can be pretty damn isolating. One thing I would have to concur with, after almost a decade at the helm of this ship, is that it often feels as though I am talking to myself.

I write this blog mostly for myself, and as a way to connect with the diabetes community. It’s mostly read by, I’m assuming, people with diabetes or those with a connection to diabetes. A lot of the conversations about diabetes that happen online or in person are primarily among people with diabetes. I am, mostly, preaching to the converted.

Diabetes doesn’t define me, but it is a big part of me. Outside of this blog, I would like to think that my real contribution to awareness of diabetes comes from simply sharing the diabetes bits alongside the other stuff.

Many people around me, who see me everyday, know that I have diabetes. I’ve explained the mechanics of how I live with my condition to a lot of these people. Many times. So when you’re continually asked the same questions, by the same people who’ve asked them already, it’s pretty easy to feel somewhat like I am talking to myself. That my efforts to raise awareness of diabetes, among the people who really need to hear those messages, are for nothing.

That was, up until a good couple of weeks ago.

After catching up with a group of people whom I went to high school with, I was absolutely blown away by how many people told me that they had taken notice of some of the things that I had been involved in around diabetes (Perhaps aided by my star studded appearance in the newspaper last year…)

The absolute highlight of this night was when a friend was asking me how I knew that I had diabetes. As I started to recall the ‘four Ts’ of type 1 diabetes (which is actually super easy to explain – thanks Diabetes Australia!), she actually stopped me and said that she knew all about them! No doubt thanks to my sharing of the National Diabetes Week campaign.

I haven’t really ‘done’ diabetes awareness month this year, partly due to being consumed with exam revision, but also because every month of the year is diabetes awareness month.

However, I guess on the final day of November I thought it would be fitting to say that your impact is bigger than you think. Even if you don’t have many followers, even if only one person reads your post, even if don’t receive any reactions or feedback from the people around you, never underestimate your impact.

On the final day of diabetes awareness month, I couldn’t think of a better reason to continue raising awareness of diabetes.

Over the past couple of weeks, a few ‘sponsored’ posts from Diabetes NSW and ACT have popped up in my social media feeds in relation to a campaign that’s currently running. This campaign, which is also sponsored by Novo Nordisk, is calling on us to ‘know the numbers’ in order to make better decisions around our diabetes management.

I am all for knowing my numbers. I absolutely love being able to monitor my blood glucose levels frequently, whether that be through test strips, FreeStyle Libre or Dexcom sensors. I love all of the added insight that blood glucose data gives me in order to make more effective decisions around my diabetes and my activity. I honestly could not live without it.

It’s just a shame that the only number that’s receiving any attention through this campaign is the hba1c.

Hba1c is essentially a three month average drawn from some of the glucose that attaches to the red blood cells. The campaign website claims that:

“Even if you check your blood glucose levels several times a day you may miss the highest and lowest points. The HbA1c test is an average so it will capture all of the highs and lows.”

I’m not actually sure how the hba1c can capture all of the highs and lows that a person with diabetes chalks up. When you’re averaging out numbers, you’re essentially masking all of those high and low points into one potentially very attractive looking number.

As a person who has lived with type 1 diabetes for almost a decade, I have personally found that the hba1c test in no way adequately captures the magnitude of my highs and lows.

If I need any further evidence of this being so, I need look no further than last week where I was chatting with someone who could have been telling my own story. Satisfactory hba1c, with levels that were bouncing between 2 and 20, while the healthcare professional was none the wiser and had no reason to offer additional support.

Admittedly, I cannot adequately understand the usefulness of the hba1c result to someone living with type 2 diabetes. Or, someone who doesn’t use insulin and isn’t subject to the same glycemic variability that I am accustomed to. Especially in light of the restrictions on access to subsidised test strips through the NDSS, perhaps hba1c is a useful tool here.

I’m not trying to take away from the hba1c result. I guess from my perspective, I’m just tired of every single allied healthcare professional judging my diabetes in the sole basis of one number. The hba1c. We don’t need to be raising the profile of the hba1c. For a healthcare professional, it seems to be almost synonymous with diabetes. So, in that respect, it’s disappointing to see this being in the best interests of a diabetes organisation and the consumers that they are representing.

Why not ask me about average glucose levels? The standard deviation of those results? Or my time in range, if I am wearing a CGM. Or even how I’m feeling about my diabetes, and more broadly?

These are all measures that have far more meaning, and better reflect the day to day management of my diabetes than the hba1c test ever could.

“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.

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.

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.