Insulin

Why I Am Waiting.

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Unless you’ve been living under a rock, you’ve likely heard of the whole We Are Not Waiting movement. You know, a bunch of people who are hacking their diabetes devices in order to enhance their functionality. Such as transmitting blood glucose data to other devices, turning a FreeStyle Libre into a CGM with alarms and even closing the loop between an insulin pump and a CGM.

You need look no further than the name of this movement to find the reason for it. People with diabetes really are at the mercy of device companies, regulatory bodies or, in the case of the snippet I read in yesterday’s paper, researchers who are currently attempting to regenerate organs in sheep!

I don’t see a cure on the horizon in the next ten, twenty or even thirty years. The business of business is business. Advancements no longer feel like a solution, but rather a pathway to the next enhancement or product. Both consumers and device companies seem too focused on feeding this diabetes technology frenzy.

The most realistic advancement that I do see on the horizon is a commercial closed loop system. That is, an insulin pump that communicates with a Continuous Glucose Monitor to automatically regulate blood glucose levels. There are a few systems currently in development in the US. Yet I don’t realistically see any of these getting into my hands here in Australia in the next five, dare I say ten, years.

I need look no further than the current insulin pump situation here in Australia. If online communities are anything to go by, Aussies are crying out for a new insulin pump option to hit the market here. There are insulin pumps listed on the TGA website that can be legally sold here in Australia, and yet we are left waiting at the mercy of distributors, device companies, marketers, financial strategists, and all of the other powers that be.

Better yet, it’s 2018 and people are still forced to do all sorts of questionable things in the name of INSULIN, the drug with a price tag that is skyrocketing by the day.

I have been reading up on the likes of hacking a FreeStyle Libre system and closing the loop over the past couple of months. There is a growing community of people here in Australia who are buidling and running homemade closed loop systems, and you can lurk or join them here.

I, however, have made the regrettable decision that I will have to wait.

For starters, I would have to commit to full time Continuous Glucose Monitoring. This is not currently subsidised for adults like me here in Australia. Nor is this, as well as the other hardware required, in my current budget while I am working toward other financial and career goals. Secondly, I don’t own a pump that is loop-able, and I don’t like my chances of being able to get my hands on one.

Finally, I’m not sure that I would be able to give any ‘we are not waiting’ efforts the due focus that they would inevitably require at the moment, with a lot of other priorities on my mind for the year ahead. As one Facebook group admin puts it, don’t bother asking for the idiots guide as these solutions aren’t for the faint headed!

I am frustrated. Not because I’m envious of others who do have the means to do so. Not because I can’t manage. Not because I don’t have good health, excellent access, good people around me or a good quality of life.

I am frustrated, because people with diabetes deserve so much better than what they’re currently getting.

The Box of Expired Lantus in My Fridge

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I have this box of Lantus that’s just sitting in my fridge at home. It hasn’t been opened. I’m unlikely to open it anytime soon, now that I use an insulin pump. I don’t really have a need for it anymore, considering that I have five fresher boxes of Lantus sitting underneath it. It expired in October last year.

There’s probably nothing particularly wrong with that box of slightly-out-of-date Lantus. The five pens in that box would likely last me a good two months if I were doing multiple daily injections full time.

That one box in a script of five only cost me around $7, thanks to subsidies through Medicare and the Pharmaceutical Benefits Scheme here in Australia.

Yet I still can’t bring myself to throw it away.

As someone with type 1 diabetes, insulin keeps me alive. Insulin keeps me alive today, and every day for the rest of my life.

I am so lucky to live in a country where I have never had to worry about how I will be able to afford the cost of lifesaving, and very expensive products to manage my diabetes. Yet there are people in less fortunate areas of the world who are unable to access life saving insulin, diabetes supplies and basic healthcare.

While I am sitting in my cosy bedroom reading with lust about the newest advancements in diabetes technology, there are people who don’t even know how they will get their hands on their next vial of insulin.

This February, we in the Diabetes Community are encouraged to Spare a Rose. The premise is simple: buy one less rose this Valentine’s Day, and donate the value of that rose (approximately $6 Australian dollars) to the International Diabetes Federation’s Life For a Child program. The cost of that one rose provides life-saving diabetes supplies, medication, and education that children in developing countries need to stay alive. One rose, one month of life to a child with diabetes. A dozen roses, a year of life for a child with diabetes.

Giving the cost of that box of Lantus to Spare a Rose this February is a no brainer.

Will I finally bring myself to throw that box of Lantus away? That’s a much, much more difficult decision for me to make…

Review: The Fast Diet by Dr Michael Mosley

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I picked up the book The Fast Diet after a lousy day last week, and quickly became engrossed in it.


You’ve probably heard of the author, Dr Michael Mosley, from his show Trust Me I’m a Doctor on SBS (which is an excellent alternative to some of the manufactured reality shows on at the moment). Michael has a family history of diabetes, and began to explore intermittent fasting some years ago when his doctor told him he was at risk of developing type 2.

Better known as the 5:2 diet, the basic idea is that you eat 500-600 calories for two days of the week, ideally incorporating a fasting “window” of 12 hours or more on a fasting day. The remainder of the time, you are allowed to eat normally. Many fans observe that it doesn’t feel like a diet, because tomorrow you’ll be able to eat whatever you want. It’s a sustainable way to lose weight and keep it off. Over time, you’ll better recognise hunger and have less of an appetite for large or unhealthy meals.

The book is peppered with plenty of research, facts and statistics supporting the idea of intermittent fasting. Michael explains that people in primitive times did not eat four of five times a day like we do today. They would feast when they came across food, and would often go without for long periods of time inbetween where food was scarce.

I found it remarkable that the average time inbetween ‘eating occasions’ has dropped by an average of an hour in the last 30 years. Thinking about myself alone, I would struggle to last inbetween meals without having something – even if it’s just a coffee. At school and work, I have been engineered to have morning recess and coffee breaks, which inevitably come with the desire for food. Diabetes mags seem to encourage this notion that we have to keep eating to avoid going low. Michael also argues that the idea of eating little and eating often has been partly driven by manufacturers of snack foods.

Michael explains that while we have food digesting in our system, the body is focussed on growth and replenishment. When the body goes without food for 12 hours, it begins to do something different. It enters repair mode, instead focussed on keeping you in reasonable shape until the food returns once more. It begins doing all of the little maintenance tasks that it has put off until now – things such as breaking down or recycling old and tired cells.

For the record, intermittent fasting is not recommended for someone with type 1 diabetes. And obviously, tending to a hypo trumps a fast.

However, some of the concepts in this book really spoke to me. I really liked the idea of a mental challenge not to graze and stack insulin doses as often as I do. I struggle to get through lunch and dinner without having something – even if it’s just a coffee. I have often skipped breakfast if I’ve had a large evening meal and wait until I genuinely feel hungry again. I have found that this is a great way to “resensitise” my insulin after grazing and stacking, and that I appreciate my food more by the time I eat it. When I think about it, my best days do tend to happen when I’m not frequently grazing and insulin stacking.

Overall, the book was both engrossing and easy to read. For a while now, I’ve been keen to do something that might help me to feel a little less lousy and a little more energetic. And, of course, ensure my insulin is working at it’s best. With a commitment of only two days per week – or even just one – it’s definitely something that I’d be inclined to dabble with. 

The What-ifs of the Festive Season

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It’s that time of the year. Food, festivities, end of year exhaustion, and the promise of a fresh start come January 1. Add to that a nasty throat infection that I’m only just getting over, and the unpredictable glucose levels that have come with it.

This is a time of year where I have traditionally cruised along with my diabetes management, pushing all of my “priorities” back to January 1. It’s during this time, as I’m cruising along, that the diabetes what-ifs begin to cross my mind.

What if I had eaten less junk this year?

What if I had been motivated to count my carbs, and weigh my food more often?

What if I had been able to keep my blood sugar levels stable through the night more often?

What if I was able to log my readings and doses and look for trends more often?

What if I’m never able to get this right?

These feelings of guilt cross my mind moreso during the festive season, when I’m likely to be found ho-ing into plates of leftover desert in the days after Christmas and reflecting on the year gone.

This year, I do feel massively lighter. I still feel exhausted, but it’s more of a normal person exhaustion than diabetes exhaustion. It’s weirdly refreshing. It’s been a good year for my diabetes. I have made some impressive strides in my management. I’m in a place that I thought was impossible this time last year.

No, things are not perfect. There are still highs. There are still lows. And I’d be lying if I said that there aren’t still some what-ifs crossing my mind this year. I think we all feel that there is always more that we could do for our diabetes.

So, I’m challenging myself not to think about the what-ifs over the next couple of weeks. I’m really just looking forward to putting my feet up this festive season, and appreciating all of the things I have been able to accomplish in 2016. Diabetes, and otherwise.

I’ll likely be dialling up big doses of insulin, and using temporary basal rates on my insulin pump to help me cruise through the Christmas eating a little easier. I’ll be monitoring my blood sugar a little more often, but the focus will be more on enjoying myself than the numbers themselves.

If you’d like to spare a thought for those who don’t have the luxury of insulin this Christmas, consider making a donation to T1International or Spare a Rose. Both organisations advocate for, and provide insulin to people with diabetes in need all over the world.

While many Offices and workplaces have the luxury of a break over Christmas and New Years, spare a thought for those in industries such as hospitality, retail and health care who sacrifice time with their loved ones to serve us during the festive season.

Finally, dear readers. Merry Christmas. Thanks for reading Type 1 Writes this year. Wishing you a very happy, and safe festive season. See you in 2017!

– Frank

First Site Change

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I had it under good authority that first site changes are a mess, and boy did I learn my lesson last Thursday morning when I did mine.

I left the old site on my stomach in place, until I was sure that the new one was a success. I opened the insertion device, unwound the cannula, unwound the paper from the adhesive, and pulled back on the inner white plastic. I squeezed on the edges of my insertion device until it “clicked” into place onto my stomach, directly above the old one.

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I pressed down to ensure the adhesive had stuck, and then pulled the insertion device up. This is what was left on my stomach.

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I could feel uncomfortable pinching underneath. My first site certainly didn’t feel like this. I looked at my site, and I knew straight away that I’d gone too far left, and too far up on my stomach. There was hardly enough body fat underneath the site to cushion it. I had to rip it out, and start all over again.

After connecting the other end of the tubing to the insulin cartridge inside my pump, I went to prime it. Insulin wasn’t coming out. I primed again. I still couldn’t see any insulin coming out.

By this point, I had been disconnected from my insulin for at least half an hour. My desk, my bed and my dresser were strewn with diabetes junk. Fucking diabetes. Fucking diabetes, I cursed out load as I searched around frantically for my workbooks. Not to mention I had the live Survivor finale on timeshift that morning, which I’d planned to be watching by this point. After finding the page that talked me through refilling and replacing an insulin cartridge, I primed again. There wasn’t a single drop of insulin coming out of the cannula.

With all avenues exhausted, I decided to give the AMSL diabetes helpline a call and see if they could help.

Guess what? You know how when you start a new insulin pen, you have to prime 10 or so units until the insulin comes out? That’s all I had to do with the pump. Hold down the prime button until insulin came out. I felt so stupid.

On the bright side, my second site change on Saturday was a piece of cake. I think I’ve got this…