Month: May 2016

DX2 Sydney

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Two weeks ago, I had the privilege of attending Abbott’s Diabetes Exchange event in Sydney (see below for disclosures). I went into this event excited about trialling the FreeStyle Libre, and meeting some of the other Australian bloggers in person. Having only communicated with PR ladies Hannah and Laura prior to the event, I was surprised to learn that there was an Australian based Abbott team. I was also pleasantly surprised that they were such a core part of our proceedings over the two days.

Peter, Bruce, Michael, Pamela and Jen were with us throughout the whole two days worth of proceedings. They each presented in front of us, but they were also very much with us in a social context, too. They dined with us on Thursday evening, they sat next to us during the formal proceedings, and they also put their cooking skills to the test with us on Friday afternoon at the Sydney Fish Market.

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Going into this event, I honestly wouldn’t have thought I’d have anything in common with these guys. They were there to sell us a product, after all. However, I had some really great conversations with most of them. Although not all of them had diabetes themselves, I could see how genuinely passionate they were in the work they did. I could see how genuinely interested they were in us. Not just about the diabetes, either. I recall speaking with Jen, in particular, for at least an hour at dinner on Thursday.

One of the highlights of the event was hearing from Udo Hoss, who talked us through the “science” of the FreeStyle Libre.

We learned about how the Libre sensors were clinically proven to produce accurate and consistent results across their whole 14 day life. I learned about the term Mean Absolute Relative Distance (MARD) from regular blood glucose checking. From memory, the MARD must be below 15% in order to be a reliable indicator of glucose levels. The Libre system achieved a MARD of 11.4% across its 14 day sensor life, making it accurate enough to make insulin dosing decisions from. For this reason, Abbott are pitching the Libre as a replacement for finger pricks.

Given that the MARD is slightly higher during the first 24 hours, I cheekily put my hand up and suggested that we should receive an extra day’s worth of sensor life to compensate. There was a lot of laughter in the room, but sadly no leeway!

There were also three conditions where we were told to confirm a Libre scan with a finger prick.

  1. When glucose levels were low.
  2. When symptoms don’t match glucose readings. (Corrected)
  3. When glucose levels are rapidly changing.

We raised the question of how we would be able to push the sensor life beyond it’s 14 days. Unfortunately they automatically shut down, as Abbott cannot guarantee their accuracy or safety beyond the 14 day life.

We were also told that the data lagged by about 6 minutes.

It’s easy to sit behind a computer and complain about something being too expensive, or something else being difficult to access. Trust me, I’m guilty of it. Yes, Abbott are a business, and like any business they are trying to sell us a product. I acknowledge how privileged I am to be able to try this product free of charge. The $95 price tag for each sensor will place it out of reach for many, I’m sure.

That being said, sitting in with the team from Abbott really gave me a greater appreciation for the whole product. I had a much greater appreciation for the whole research and development process, and not just the item that I see on the shelf at the Chemist.

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Thanks again to the team at Abbott for your great hospitality, and for having me at DX2 Sydney.

You can learn more about the Australian launch of the FreeStyle Libre at freestylelibre.com.au.

Disclosure: Abbott paid for my travel expenses to and from Sydney. I received a FreeStyle Libre reader and two sensors free of charge. There was no compensation, or expectation that I would blog about the event. All opinions expressed here are my own.

First Week On The Insulin Pump

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The last two weeks have been an absolute blur. This month has been diabetes overload. The new devices that are attached to me are a big reminder of that, although not necessarily in a bad way. My desk is an absolute mess of cable cords, information booklets, carb counting books and test strip containers. Every time I clean it up, I end up needing to pull the stuff out again.

I’ve been asked so many times about how I was feeling in the lead up to insulin pump day. Yet the reality didn’t actually set in until I was at diabetes clinic last Monday morning. Some of the other questions around it, however, have been rather amusing.

So when do you go in for your surgery?

Is it like a computer that’s strapped to your back?

It’ll be quite heavy. Will you still be right to work here?

Does the insulin go in through an IV line?

And my favourite, courtesy of one of my Aunts:

They’re going to have to cut you open! They’re going to have to cut you open!

It’s so bloody hard to explain what it actually is, so I’m really looking forward to being able to pull out my pump and show everyone.

Sidenote: My favourite diabetes hack from Friday’s Diabetes Blog Week prompt goes to Laddie at Test Guess and Go – objects photograph better on colours.

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The biggest misconception here, is that people thought I was taking time off for a physical recovery after the insulin pump. The truth is, it’s been more of a mental one. I’ve slept over almost every alarm that I’ve set for myself during the night to test, simply because my brain is fried from diabetes. Even harder, is the fact that most people won’t see the huge learning curve of these initial weeks.

Every night this week, I’ve been putting my overnight basal insulin rate to the test. Seeing if it will hold my BGLs steady, drop me further, or make me spike. Every morning, I’ve plugged my devices into the computer and analysed the results. Having access to such detailed data through my FreeStyle Libre (I received a reader and two sensors free of charge – further disclosures are here) has been helpful in tracking the movement of my BGLs overnight, and making changes to my basal insulin rate. It’s also a challenge not to respond to those annoying trend arrows and micromanage data. 

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Having both my diabetes educator, and my family to talk it through with each day has been a huge support. I’ve sorely missed my educator’s guiding hand over the weekend, and I hope that I haven’t veered too far away from the road in my decision making. Being home to navigate my way through it this past week has also been a massive relief. But I’m also a little overwhelmed at the new factors that will be thrown into the mix when I head back to work tomorrow.

This past week has taken enormous patience. I’ve hardly even made a dent in my homework. Once my overnight basal rate holds me steady, I’ll move onto testing my morning basal insulin rate, where I’ll have to deal with morning cortisol glucose dumps. Then the afternoon, and then the evening. Then fine tune Insulin to Carbohydrate ratios, and correction ratios.

It’s hard to remind myself that this will take time to get right.

Amongst all of this, it was hard to believe that it was also my birthday yesterday. 

It was such a relief to have that guidance from the pump in bolussing insulin for my birthday dinner, rather than my lazy guesstimates. It was so nice to simply pull out the pump from my pocket, and push a few buttons to bolus for the cake. 

The pump is one of the greatest birthday gifts I could have wished for this year. It’s a brand new chapter for my diabetes, and I’m confident the change will be a positive one.

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Diabetes Hacks

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It’s Day 5 of Diabetes Blog Week, and today’s prompt is titled “Tips and Tricks.” Inspired by an OzDOC chat a few weeks ago, I thought I’d go with “Diabetes Hacks.” Anyhow, here is today’s prompt:

Let’s round out the week by sharing our best diabetes tips and diabetes tricks. From how you organize supplies to how you manage gear on the go/vacation (beach, or skiing, or whatever). From how you keep track of prescription numbers to how you remember to get your orders refilled. How about any “unconventional” diabetes practices, or ways to make diabetes work for YOU (not necessarily how the doctors say to do it!). There’s always something we can learn from each other. (Remember though, please no medical advice or dangerous suggestions.)

I used to live by the motto that “nothing will ever happen to me.” Historically, I’ve packed as lightly as possible when heading out with diabetes. My meter has often been replaced with a blind guess. A wallet will subsidise hypo treatments on the road. Meanwhile, my Medic Alert bracelet spends hardly any time on my hand.

The biggest problem for me, is trying to figure out where to put it all. I hate carrying crap around, especially when there’s a good chance I won’t even need it. I hate bulky things in my pockets, weighing my shorts down. I can’t stand overstuffed jeans, or having things in my hands. The same policy applies to anything not related to diabetes.

Slowly but surely, I do feel that I am becoming more organised. I am starting to think more long term, and the possibility of the unexpected happening. In fact, I’m not even sure that I recognise myself anymore!

During insulin pump training on Tuesday (posts to come next week), my diabetes educator raised the idea of having a backup plan. Coming off basic injections, I have been quite worried about being so reliant on one device to do everything for me. I’ve been mulling over scenarios in my head where I might have to inject Lantus and go back to Multiple Daily Injections temporarily.

Traditional me would have nodded and shrugged the idea off. Instead, I reached over to my bag and pulled out my contingency pack in front of Gwen. I had a contingency pack after one day with an insulin pump! It was one of my most proud, and so-unlike-me diabetes moments. It’s nice to know that backup is there.

My favourite hack, as Ashley witnessed first hand last week, are my test strip containers. Taking the time to count out skittles in the midst of a hypo has been frustrating over the years. I often lose count of whether I’ve eaten 5 skittles or 7, and am left guessing. Other times, I am just desperate to cram the sugar into my mouth.


Nowadays, I have collections of empty test strip containers ready to go on my desk. I fill them with 10 skittles each, and I know that’s 11g of carbs per container. They’re super easy to carry around with me when I’m heading out, and saves me the pain of bringing the whole bag with me. I can stash them in my desk drawer, my bag and in my locker at work. If I’m struck down by a hypo, I can easily just shove a whole container into my mouth without even thinking about it. They also worked nicely as sharps containers in Sydney last week!

My favourite item of clothing, without a doubt, is my Lost Highway jacket. It’s got plenty of pockets where I can easily cloak my insulin pens, meter, hypo containers, as well as all of my non-diabetes stuff. Even during the Summer, I’m guilty of brining it along to a party and holding it in my hand the whole time! Sadly, it’s in the wash today, so this old Instagram photo will have to do.

https://www.instagram.com/p/80lsx1A_bu/?taken-by=franksita

 

To read other posts related to today’s prompt, click here.

The Healthcare Experience

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It’s Day 4 of Diabetes Blog Week, and so far I’ve managed to make my way through all of Monday and Tuesday’s posts, and comment on a fair chunk of them. Today it’s time to tackle the topic I’m most excited about. Here is today’s prompt:

Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

I’m pretty grateful that I live with diabetes in Australia. I attend a diabetes clinic in a public hospital which is completely free of charge, and hooks me up with any related service I need. Private Health Insurance covers hospital care, and the cost of my brand new $9,000 insulin pump (posts to come next week). Diabetes consumables and insulin are heavily subsidised by the Australian government. All in all, I never need to worry about how I will make ends meet with diabetes here in Australia.


My biggest frustration, however, is that I feel my healthcare professionals don’t often have enough time for me. I was diagnosed as a young adult, which meant that getting a grasp on diabetes education and self management was a lot easier. I was quickly weaned off diabetes education as soon as I could manage on my own. My clinic has a long patient list and waiting times for appointments can often span months. My chart probably looks a lot better compared to most of the other patients in the clinic, which means I am pushed out of the endocrinologist’s office as quickly as possible.

But what about if I’m not happy? What if I don’t want to settle for satisfactory? What if I want to do better with my diabetes? What if I have the potential to do better?

Over the past year or so, I’ve really had to learn to stand up for myself and what I want from my healthcare team. During a time of burnout last year, I had to ring up and chase appointment cancellation slots down at the clinic. I had to do the research, attend the information evenings and tell my diabetes educator that I wanted to go onto an insulin pump. I had to make my goal clear in front of my healthcare team, one that was beyond the “satisfactory” point where I was at.

Nobody else was going to help me, even if there was a benefit to my health. There is simply no time for me in a busy diabetes clinic with a high volume of patients. It’s great that I am a “switched on” patient, but the sad reality is that not every person with diabetes is. Not every person is in a place where they are able to speak up for what they want. It can be hard just to accept and become comfortable with this condition, alone.

One person I would like to praise is my diabetes educator. I know that she is under the pump. Yesterday, she told me that she is under pressure to cut one hour education sessions down to 30 minutes. Yet she always makes herself available to me outside of appointments by both phone and e-mail.

I’m still in uncertain territory at the moment with the insulin pump. I’m testing my basal insulin rates overnight, and checking to see whether they keep my glucose levels steady or not. Being able to talk the adjustments through with Gwen over the phone and by e-mail these past few days is a big relief. I haven’t leaned on this kind of support as much in the past, but I know that I intend on doing so in the next few months.

Technology is also amazing. When I was first diagnosed six years ago, I was given a meter and a logbook. Today I have meters that log my blood sugar levels and calculate my insulin doses. I have devices like the Insulinx and the FreeStyle Libre which are computer friendly. I am using the amazing Diasend software, that allows me to upload the data from my insulin pump, glucose meter and FreeStyle Libre into one place. Gwen can instantly see the reports on the other end.

My biggest takeaway here, is to stand up for what you want. Don’t be afraid to lean on your healthcare team, but also the people around you who can encourage you to do so. Your health is so worth it.

To read other posts related to today’s prompt, click here.

Language Matters

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Today is Day 3 of Diabetes Blog Week, an annual event in the diabetes online community created by Karen at BitterSweet Diabetes. Here is today’s prompt:

There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I’m willing to bet we’ve all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don’t care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let’s explore the power of words, but please remember to keep things respectful.

My guess is that everyone will be talking about “diabetic” versus “person with diabetes” today. I wrote about this a few weeks ago right here. In short, I feel that the word “diabetic” is a label, while the word diabetes describes me and empowers me.

Today, I want to talk about the power of Language. I believe that Language has the power to influence how diabetes is talked about in the public domain.

At Diabetes Exchange in Sydney last week, we spoke about the importance of credible diabetes reporting. There are so many people and groups on social media who are passionate about their cause – whether it be diabetes technology, diabetes diets, government funding or anything inbetween. Pick a cause, and you can probably find a tribe. I think that’s fantastic. I love that we have so much passion in our community.

Yet many of these messages aren’t conveyed in a credible or sensible manner. I come across many groups and comments on social media sharing sensationalised messages. These people are so passionate about their cause, that they will happily skew the truth in order to receive attention. These messages are often inaccurate, generate fear, and don’t really do anything to support people with diabetes.

However the sad reality is that the wider media eat up these sensationalised stories. The device that stops her from going unconscious overnight. The suffering boy who just saved his life with a shot of insulin. You get my drift.

These stories don’t really give a good representation of people with diabetes. People without any connection to diabetes make assumptions based on what they see reported. Perhaps that a person with diabetes is not fit to work. That a person with diabetes lives an unhealthy lifestyle. Or in some cases, that a person with diabetes could drop dead at any given moment! I don’t feel that it gives us a lot of hope.

Yet the success stories don’t receive enough attention. Where are all the people who are living relatively normal, happy lives with diabetes? Positivity can be a wonderful motivator for health, and I feel it’s sorely overlooked.

My point being, it starts with us. With you and with me. We have the power to shape how diabetes is talked about in the media and in the public domain. To borrow from Renza, Language Matters.

To read other posts related to today’s prompt, click here.