Month: October 2018

In Memoriam

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Nobody really knew what to expect from her presence when she entered into this world on May 16, 2016. But she was something that had been wanted for a long time. A very long time.

From the moment she came out of the box, she was loved.

She may have been seen as a foreign object, but she quickly made herself at home. She could often be found clipped securely to the left pocket of trackpants, shorts, sleep pants and trousers.

Her first official piece of business took place over a plate of bacon and eggs in the hospital cafeteria, and it sure was an exciting moment.

She was a far more than just a material being that departed the hospital on the afternoon of May the 16th. She represented hope. A way forward. A fresh start, for the companion that she would be servicing.

There were several times over those first few months of her life where her capabilities were seriously doubted. Site failures, air bubbles, stubborn highs, weakening lows, unicorns and basketfuls of emotions were weathered.

She was a little chunky. And clunky. As she got older, her skin began to peel. She often inflicted feelings of complacency over the course of her life. She served three remarkable stints inside a drawer for a month at a time, delivering a basal rate of zero.

But there was something that could always lure her back out of hiding. She offered a great deal more convenience. Her basal coverage was far better than what her predecessors could ever offer. She was a great motivator to watch blood sugar levels more vigilantly, and learn about the gazillion things that affected them. For the majority of the time, her benefits were seen to outweigh the constant attachment.

Throughout her lifetime, she upheld a dependable reputation. While residing in Perth, she travelled to Sydney, Adelaide, twice to Melbourne and back. She weathered many coffees, cannoli, pasta nights and chocolate. She endured constant handling during daily physical activity, relied upon for temporary basal rates and frequent glances at insulin on board.

She may have been taken for granted at times, but she never complained one bit.

She departed this world at 9am on October 11, 2018, surrounded by her nearest and dearest. She would love to have been laid to rest in the company of the companion she had faithfully serviced for the last 30 months, but it was sadly not to be.

Instead she is destined for a body bag addressed to distributor AMSL Diabetes in NSW, where she will finally be laid to rest.

To my trusty Animas Vibe, my first insulin pump and the very thing that has given me back a life with type 1 diabetes.

Your legacy will live on forever.

May you forever Rest In Peace.

16.05.2016 – 11.10.2018.

#TslimForFrank

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So, this happened today.

My dream of getting my hands on Tandem’s beautiful touch screen tslim X2 insulin pump finally came true.

Massive thanks to the team at AMSL Diabetes for bumping me up to a priority upgrade (the upgrade was covered under my existing Animas Vibe warranty) and for the outstanding customer service during the transition.

In other news, AMSL Diabetes have also confirmed that all future software updates to the tslim X2, including Basal IQ and Control IQ, will be free of charge to Aussie customers.

Amazing what a little hashtag can do!

Trust.

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When I first started on an insulin pump two years ago, my diabetes educator prescribed me with insets. During those initial weeks, site changes were an awfully overwhelming experience, causing several hours of anxiety following each change.

The pressure from the ‘inset’ insertion device would often trigger bruising and bleeding on my very lean body. I would spend hours watching my site and my blood sugars like a hawk, just waiting for signs of failure. I could really feel the sites ‘digging’ in as I crashed on the couch watching a movie or laid in bed at night. It wasn’t uncommon to feel stinging when I administered mealtime insulin boluses, either.

Then there was one tumultuous night where I discovered a kinked cannula hours after a site change, as I was on the verge of DKA (when all I really wanted to do was kick back and watch Serena Williams play in Wimbledon).

I’d be lying if I said I didn’t question whether insulin pumping was the best option for me.

Thanks to the help of the diabetes online community, I eventually found an infusion set that went in on an angle, and was inserted manually with my own two hands and a needle. And it’s quite honestly the very reason that I am still able to use an insulin pump with confidence today.

Although I never believed it would be possible at the time, I now realise that I very rarely have infusion sets fail on me. I can place an infusion set with ease, alternating around the left and right sides of my stomach, and go about my day without giving it a second thought.

I guess I’ve been reminded of this in recent weeks as I’ve tried to reconnect to my YpsoPump, which does not have angled sets, on several occasions (more about the YpsoPump here and here).

The 90 degree sets simply don’t agree with me.

When I spend relentless hours of my life managing diabetes, the very last thing I have time for is tending to tethering issues with the devices that I use.

My Animas Vibe gives me the option that I trust the most to infuse insulin into my body 24 hours a day, and that’s why I’m happily sticking with it for the time being (although I wouldn’t say no to a #TslimForFrank, either…)

Christmas Day, For a Person With Diabetes

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Imagine one massive room, that you could wander around at your leisure. A room that had all of the latest and greatest diabetes tools and technologies on show. A place big enough that you were free to go and chat with any of the exhibitors that you wish to approach, without having sales reps from competing companies clamouring all over you. An opportunity for you to actually hold a blood glucose meter in your hand, have a play with an insulin pump, and ask all of the questions that have been sitting on your mind for the last few months.

There might even be a few coffee bars with complimentary chocolates on the counter to help get you through such a massive day. Ideally, there might even be a few freebies such as a new blood glucose meter, a mug or a sample of glucose tablets to take home. But above all, you have the opportunity to really learn and get excited about all of the options available on the market to support you in the self management of your diabetes.

This is actually a reality for healthcare professionals, researchers and people working in the diabetes industry. I’ve been lucky enough to experience what I can only describe as Christmas Day for a person with diabetes through my attendance at the Australasian Diabetes Congress over the past two years.

Several weeks ago over a coffee with one of the players in the diabetes space, I was asked what I would like to see more of from their brand. My answer was simple. More direct to consumer initiatives like the ones that I’ve been lucky enough to be involved in as a diabetes blogger.

One good example of such initiative is Abbott’s FreeStyle Libre group set up sessions. To my knowledge, people with diabetes are invited to attend a group session with both a diabetes educator and an Abbott representative. They are provided with a complimentary FreeStyle Libre reader and sensor, and learn how to use the product during the session (depending on the place of setup, CDEs may charge for the session).

Both Diabetes Victoria and Diabetes NSW have held large diabetes expos in the past. While I don’t know a lot about the nature of these events, I believe that these are weekend events held in Convention Centres with a combination of exhibitors and information sessions.

Another personal highlight for me was the technology night designed by my fellow Young Adult Diabetes Committee members in Perth last year. The evening brought together representatives from Abbott FreeStyle, Roche, Cellnovo, AMSL and Medtronic Diabetes. There were also a selection of the Committee’s favourite diabetes accessories on sale.

Most importantly, the evening was designed by people with diabetes, for people with diabetes. There were Committee members speaking about their own personal experiences with such technology, as well as healthcare professionals explaining how the technology works. Seeing people in attendance who were only hearing about such technologies for the first time really highlighted the importance of holding events like these.

I get that there are regulations around the direct ‘marketing’ of pharmaceuticals to consumers. I have been told that the pharmaceutical players in this space are free to support any events that are initiated by third parties, but there are restrictions on events initiated in house. In fairness, I don’t want to see events where diabetes sales representatives are smothering innocent consumers who may be unable to see through the heavy spin.

However, the reality is that not enough consumers know about all of the available options on the market to manage their diabetes. Would it not be in the best interests of pharmaceuticals to be able to reach the actual users of their products in the same way that they can reach healthcare professionals?

There was a time before this blog existed where I didn’t really know a lot about diabetes and the options available. It took me five years until I moved on from the blood glucose meter that I was given on diagnosis, having learned about something more modern and better suited to my needs. There was a time where I never would have dreamed that I would be a candidate for an insulin pump, because I thought they were only for kids or people who were really struggling to manage their diabetes.

As I follow Tweets from the European EASD conference happening in Berlin this week, I am reminded of just how lightening fast these advancements in the treatment of diabetes are happening these days.

It doesn’t necessarily mean that newer or more ‘tech-ier’ will be better, but people with diabetes have a right to know and make an informed decision that best suits their needs. I try to share as much of what I learn here on my blog, not because I am in the pockets of big pharma, but because getting that information out there is a mission which I truly believe in.

I distinctly remember emphasising the importance of healthcare professionals relaying word of these new technologies back to people with diabetes throughout this year’s Congress. Equally, I know that there are many person centred healthcare professionals who will do just that.

People with diabetes have a right to know about all of the options out there.

We need more opportunities like these.

A Type 2 Diabetes ‘Shake?’

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Last weekend, we were on the hunt for a dog friendly café to keep this little guy entertained.

My sister suggested a place, before casually mentioning to me that they had a ‘type 2 shake’ on the menu.

What, is that like a health shake or something? I asked.

No, it’s actually a shake that’s got lots of sugar in it, she replied.

We eventually drove there to find the place closed.

After we had driven elsewhere and I was finally caffeinated, I began googling this place in search of a menu. Indeed, it was an indulgent shake that the user was encouraged to try ‘at your own risk.’ I then migrated over to Facebook, where I eventually found a recent post promoting the menu item in question.

I was so frustrated. Yeah, they had specified the type of diabetes, but that wasn’t the point.

Nobody intentionally asks to get diabetes.

We all know that sugary treats in excess aren’t good for us. We all know that in excess they may eventually lead to obesity, insulin resistance and type 2 diabetes.

But that isn’t always necessarily the case.

We also know that some people are genetically predisposed to developing type 2 through things like family histories or previous gestational diabetes. Others are ethnically or geographically predisposed to developing type 2 diabetes. Then there are those who don’t have an equal chance because they may lack things like the basic education or quality healthcare that I take for granted.

The last thing that people living with diabetes need is reminders that make them feel guilty, blamed or shamed for their choices.

The last thing that people living with diabetes need are messages that further stigmatise a condition that is already surrounded by, you guessed it, a great deal of stigma!

Yet here was this shake that was making a mockery of people with diabetes. I’d be willing to bet that a Cancer shake would never appear on the menu, so I don’t know why the owners of this cafe felt that diabetes was okay to joke about.

So, back to that Facebook post. You bet I left a comment on it. There was no swearing or personal attacking in said comment. But it was a little strongly worded – something I regret in hindsight – indicating that blaming, shaming and stigmatising was not helpful to people with diabetes.

24 hours later, a notification popped up in my Facebook feed. I was expecting some kind of acknowledgement or explanation.

But nothing could have prepared me for the response I received in return.

To paraphrase, I’m a miserable troll who should pull my head in and stop being a keyboard warrior (they obviously had no idea who I was). This ‘type 2 shake’ was apparently a ‘statement’ that the sugar it contains is not good for you. But what do I know, apparently type 2 diabetes is a great catchline to sell a product!

With no time for such negativity in my life, I thanked the café for their kind words. After expressing that it was a shame that they were unable to the larger issue, I wished them a lovely day and bowed out of the conversation.

With every red notification icon that popped up on my Facebook, I was expecting to see others chime in with more ignorant replies to my comment.

Surprisingly, quite the opposite happened.

The diabetes community rallied behind me.

Within a mere three hours, I had at least ten comments on that post in support of what I had said. People were tagging their friends. I honestly don’t think it was the shake itself that was triggering commentary anymore. It was about the sheer ignorance that came from their comment.

Had the Facebook post survived few more hours, and it surely would have gone viral.

But it mysteriously vanished not long after.

While the cafe clearly didn’t like the negative attention that they were getting, I highly doubt that I got my point across given their highly ignorant response.

I can’t really say that it’s worth throwing any more of my energy towards.

I only know that I won’t be going back there again.