There’s More to My Self Worth Than Numbers Alone

One of the attendees at DX2 Melbourne brought along a Rubik’s Cube. She held up one side that was perfectly completed, likening it to how she might appear online. Turning it around, she then revealed another side that was all mismatched, likening it to the side of her that people online don’t see.

I’ve really been mulling over this idea of perfectionism lately. A quick scroll through social media has me glancing at photos of people with happy faces or flat lines or enthusiastic captions.

Hey, I’m equally as guilty. Of course I want to share with you my victories. Of course I want to show you that diabetes doesn’t get the better of me.

But I’d be lying if I said that this was always the case.

Among all of this perfectionism, sometimes it feels difficult to share something that’s not perfect. There are times when I’ve been around others with diabetes, and I feel hesitant to check my blood sugar for the sake of the onlooker peering at my imperfect Libre graph.

I just feel like saying that I am not perfect.

Case in point, four days spent in Melbourne last week. There was lots of walking around, temporary basal rates, food aplenty and naturally some larger spikes.

But quite honestly, I wasn’t focussing too hard on any of that at the time.

Rather, I was focussed on having a good time and seeing what those overly Melbourne people rave on about.

There’s more to my self worth as a human being than numbers alone. Don’t ever forget it.

En Route to #DX2Melbourne!

I’m in Melbourne today for the second Australian Diabetes Exchange Squared blogger event, hosted by Abbott Diabetes Care.

I’m really excited for the opportunity to get together with this group of advocates one year on from our last convention in Sydney for the launch of the FreeStyle Libre. I think it’s fantastic that Abbott are still keen to engage with us beyond the successful launch of their product. Last year’s experience left me feeling extremely valued – right down to afternoon tea from my favourite Cannoli shop in Sydney discovered through some blog stalking. So, I can’t wait to see what’s in store for #DX2Melbourne (and I’m not just talking about Cannoli…)

Take my enthusiasm with a grain of salt, because Abbott have covered my travel costs from Perth to be here. They will also be putting me up this evening, and I expect there will be a few other perks which I will disclose in due course. Abbott do not pay for my opinions here or anywhere else – those remain my own.

If the talk among my circles is anything to go by, there are a lot of divided opinions on the FreeStyle Libre. I’m expecting that there will be a great deal of discussion over the next two days, and hopefully we will have the opportunity to pose our questions and feedback to the Abbott team. 

Tonight I will be participating in a live webcast with a panel of diabetes bloggers in attendance. The topic of discussion is the mental, emotional and psychological aspects of diabetes. The webcast is open to anyone, simply register your name and email address here. 

The best way to follow along from the proceedings today and tomorrow is to hop onto Twitter and follow #DX2Melbourne. Also keep an eye on the Type 1 Writes Facebook page, as I’ll be posting updates there as well. 

Feel free to leave me any questions in the comments below, and I will endeavour to pass them on to the Abbott team.

The Cost of Having Diabetes For a Year

It’s tax time. I’ve just spent the weekend being a good brother and completing both of my siblings’ tax returns, as well as my own a week ago.

The topic of conversation over dinner on Friday night was annual incomes, and how they stack up against all of our living expenses. Then, as if trying to prove his point, my Dad asked me how much all of my diabetes expenses would add up to.

I guess I’ve never really done the sums before, for a few reasons. My diabetes and broader health are non-negotiable expenses, drummed into me by parents (second only to eating). Obviously here in Australia, we are extremely lucky that most of the essentials are heavily subsidised, and I’ve never genuinely struggled to make ends meet. I’ve also received a great deal of support from my family in terms of meeting the costs associated with my diabetes care.

So, maybe I should count myself lucky that I’m only doing the sums for the first time today.

Test Strips – $918.50

I would go through at least 15 test strips to monitor my blood sugar each day.

That’s 5,475 test strips a year.

Or 55 boxes of 100 test strips a year.

A box of test strips will set me back $16.70, which costs me a beautiful $918.50 each year.

Infusion Sets – $217.10

I would change the infusion set on my insulin pump every three days.

Thats a total of 122 infusion sets each year.

Or 13 boxes of 10 sets per year.

A box of infusion sets will set me back $16.40, which totals a fantastic $217.10 a year.

Insulin Cartridges – $54.50

I replace the insulin cartridge in my pump once a week.

That’s 52 cartridges each year.

Or 5 boxes of 10 cartridges per year.

A box of cartridges sets me back $10.90, which adds up to a cool $54.50 each year.

Insulin – $77.60

A 3ml cartridge of NovoRapid insulin lasts me roughly 7 days.

That’s 52 cartridges a year.

Or two scripts per year, each containing five boxes of five NovoRapid cartridges.

A script of NovoRapid penfill cartridges sets me back $38.80, which is a cheap as chips $77.60 per year.

(Thank you Australia, for making insulin so relatively affordable. Unfortunately the rest of the world doesn’t have the same luxury).

Private Health Insurance – $918

I wouldn’t want to be without a private health insurance policy. It covers the cost of any hospital visits, treatment, as well as rebates on other services such as dental and optical. It’s a small price to pay for the peace of mind, as well as the $9,000 insulin pump that was fully covered under my policy last year!

I renew my policy annually, which set me back an awesome $918 this year.

(Not to worry, it only gets more expensive with every passing year!)

General Practitioner – $16

I would only visit my GP if I need something. Such as an examination, a signature, or a fresh script of insulin inbetween endo visits. Or if I’m dying.

I might visit my GP twice a year.

After a Medicare rebate, I’m usually left to pay $8 out of pocket, which adds up to an awesome $16 per year.

Diabetes Educator Sessions- $100

While I see an endo for free at the hospital, I choose to see a diabetes educator privately. Private education gives me invaluable support and one-on-one time that the public system simply does not allow for.

I would visit my diabetes educator five times annually.

After a Medicare rebate, I am left to pay $20 out of pocket for each session, which totals a cool $100 a year.

Hypo Treatment – $40

My go-to treatment for hypos are Skittles. 

I buy them in party buckets.

I would buy four party buckets a year.

A party bucket sets me back $10, which totals a nice $40 a year.

Grand Total – $2,341.70

It costs me $2,341.70 to live with diabetes for a year. That’s not even factoring in the intangible costs. It’s a fair chunk of my annual income. It saddens me, because it would definitely make a dent in a few bills at home, among other things.

However, I also count myself fairly lucky, because I know that my counterparts overseas might not be as fortunate as me. If I have to live with diabetes, then there’s no place in the world that I’d rather live with it than in Australia.

But seriously, I think it’s time we make these expenses tax deductible.

Better yet, give us a chronic illness tax offset. C’mon, Australia!

From Uni Procrastination, to a Type 1 Diabetes Diagnosis

Monday, May 3 2010

It was the first week of May 2010. A warm May, from memory. My head was buried in uni assignments and a part time job, with my 18th birthday looming just a few weeks away. 

In an attempt to make some kind of headway with those assignments, I decided to skip uni for a few days. I was never the kind of person who could smash out a 2,000 word paper the night before it was due. There were at least three or four separate papers I had to write, each in need of ten credible journal references. This meant hours and hours of reading through painfully long and boring PDF documents. I needed all the time I could give myself, because I knew I would be working later in the week.

Being left to my own devices in an empty house was a recipe for procrastination. Over the course of three days there were many Facebook sessions, browsing breaks, and heading to the kitchen for a drink. In fact, the latter seemed to be happening more often than I was normally inclined. A glass of soft drink was over no sooner than I had poured the glass. Even plain water, which I found unpalatable, was tempting. 

Try as I might, I just couldn’t seem to find the energy to focus on those papers I had to write. I felt rather tired and lousy. Rightfully so, given I had just wasted away three whole days doing next to nothing.

Thursday, May 6 2010

I really didn’t want to get out of bed. My mouth was ever so dry, and I felt really lethargic. Feeling the shame of a very unproductive three days, I forced myself up out of bed. Thinking I had to snap out of my rut, I prepared a super healthy lunch to take to work. A salad sandwich, Ski yoghurt and carrot sticks.

The energy to remain standing on my own two feet at work that day was lacking. I might have lasted half an hour, at best, before I gave in and went home.

I wasn’t even sure I’d be able to drive myself home. Although tempted to call Mum and Dad, I knew they were out and didn’t want to interrupt their errand. It took every last ounce of my energy to drive myself back home. No sooner than I had walked through the door, I collapsed onto the couch and buried myself under the comfort of a blanket.

When my parents arrived home, I told them that I wanted to go see a doctor. Mum relayed to me that the earliest available appointment to see our family doctor was Saturday, and I knew I simply couldn’t wait until then. 

We visited a medical centre later that morning. After explaining my symptoms of exhaustion and excessive thirst, the doctor sent me home requesting bed rest and hot fluids for three days.

I spent the next three days in bed, which speaks volumes for me. Never in my life had I stayed in bed when I was unwell. Sick days were often spent eating Mum’s chicken noodle soup, reading a book or watching the midday movie surrounded by tissues. 

My mouth was now stripped of all of it’s saliva. I was struggling to find any food even remotely appealing, much to Mum’s distress (eat something!). I questioned my diet and lack of interest in physical activity, truly under the belief that these symptoms were of my own doing.

Sunday, May 9 2010

It was very early on a Sunday morning. Mothers Day, to be exact. I was restless, and had gravitated from my now uncomfortable bed to the living room couch. Ice cold, refreshing drinks were now a craving. These cravings were becoming insatiable, and more frequent. I was struggling to pass the mere minutes in between refreshing glasses of ice cold Orange Juice on the rocks.

In the kitchen, I was frantically trying to get ice cubes out of the tray and into the Snow Cone machine. I was onto my third or fourth orange juice granita when my rumblings in the kitchen got Mum out of bed.

“What are you doing? The doctor told you to have hot drinks!”

My heart rate was becoming more rapid by the minute, and I was going to the toilet at least once every hour. A bout of nausea finally made me feel slightly better, and got me settled that night.

When I woke up a few hours later, I was panting. My heart rate was extremely rapid and I felt breathless. I was still extremely thirsty and exhausted, and going to the toilet every hour. I told Mum and Dad how I felt, just waiting for them to suggest what I was thinking.

No sooner than Dad had started talking about going to a doctor, I shot it down. I knew that it would be pointless, and that I couldn’t hold out for that long. My mind was made up. I had to go to hospital.

The car ride was a blur. I was panting the whole time, eagerly staring out the window the way Scruffy does on the way to the park. I had no idea what was wrong with me, or if I would ever have my salivary glands restored. Honestly, then and there, I wasn’t even sure that I would survive this.

Soon enough, I would learn that my pancreas had stopped producing insulin, the hormone that regulates blood sugar levels, through no fault of my own. I would become dependent on insulin injections and frequent blood glucose monitoring with finger sticks for the rest of my life.

I was diagnosed with a condition called type 1 diabetes, the minute I walked through the emergency room door.

It’s National Diabetes Week here in Australia, and the reality is that many individuals and healthcare professionals aren’t aware of the symptoms of type 1 diabetes. Case in point. Had these symptoms been properly diagnosed when I first visited the doctor, my hospital admission may well have been avoided. I’m sharing this story today, with the hope that it might stop another person from going through the same ordeal as me.

VLOG: It’s About Time!

Happy National Diabetes Week, Australia!

This year’s theme is “It’s About Time,” which coincidentally ties in with how long overdue I am for another vlog.

I think it’s great that we are focussing on earlier detection of diabetes, and the theme certainly resonates with me. However I’m still not wrapped with the heavy focus on all the bad things that could happen.

Take it away, Frank…

You can also check out Diabetes Australia’s video which I mentioned somewhere in my ramblings here.

Of course, I’d love to hear your thoughts on this as well.