Author: Frank

YpsoPump: Eight Weeks Old!

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I was full of enthusiasm when I learned that I would have the opportunity to road test a new diabetes toy in the YpsoPump.

The YpsoPump does have a fair few differences to traditional insulin pumps, but for the majority of my eight week adventure these differences were far outweighed by its sleek and lightweight nature.

With a stockpile of supplies belonging to my late Animas Vibe sitting in the wardrobe, I made the decision to pull my old pump out of retirement two weeks ago. It actually has reminded me of some of the features that I have been missing.

One of my biggest issues with the YpsoPump has been occlusion alarms. Unfortunately, at least 1 or 2 infusion sets in each box that I have used so far have triggered occlusion alarms. There have been no visible signs of site failures such as kinking or bleeding. High blood sugars clearly indicated that insulin was not getting through, however the alarms only seemed to trigger during a decent bolus of at least 3 units.

I’ve been connecting to a new infusion site at mealtimes where I’ll give a decent bolus, hoping that any occlusions will be triggered. I have reported the issue to Ypsomed with little answer, although I was pleased that my level of diabetes knowledge was acknowledged over the phone. I do wonder if this is simply an issue of me being too thin and lacking enough tissue to cushion the cannula beneath my skin.

I do also miss having the option of having infusion sets that sit on an angle beneath my skin. I can really feel the Ypsomed sites ‘digging in’ when I’m lounging on the couch or sleeping. The marks and bumps left on my skin after removing an infusion set also seem bigger, presumably from the sets ‘digging in.’

Being fairly thin, I don’t think the Orbit inserter is the best practice for me to apply a new infusion site. Inserter devices didn’t agree with me on my late Animas Vibe. While my experience was better than the Animas insets, I definitely intend on manually inserting my sets when I next use the pump.

The one thing I would change about this pump is its lack of a built in bolus calculator. While performing bolus calculations on my iPhone is largely okay, I have found myself slacking off here and there. I’d also like to see more customisation in Ypsomed’s bolus calculating app, such as being able to adjust insulin to carb ratios for things like physical activity.

It was also far too inconvenient having to wait for the app to sync with the pump for insulin data to perform a bolus calculation. Bluetooth was also a significant drain on the pump’s battery. I have since switched the bolus calculator to Multiple Daily Injections mode, instead relying on my ability to log all of my bolus calculations to obtain accurate insulin data. With Bluetooth switched off, I’ve also managed to get a more decent 21-24 days from an Energiser AAA battery.

The thing I like most about the YpsoPump is its sleekness, size and lightweight nature. I have definitely missed that in these past two weeks, especially when I’m travelling and have other things to carry around in my pocket as well. I feel confident that I can live with those differences in return for its weight – particularly in the Summer, when pump complacency is a real issue for me.

The YpsoPump has definitely been a learning curve over these past eight weeks, but as with all other aspects of managing diabetes, I’ve learned how to best make it work for me.

Disclosures: Ypsomed Australia provided me with a YpsoPump, infusion sets, reservoirs and an inserter to trial at a launch event in Sydney. There was no expectation that I would blog, or even trial the pump itself. All opinions expressed here are, as always, my own. 

Remembering My ‘Why.’

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I often marvel at just how much I’ve gained from being a part of the diabetes community.

From talking to people connected to diabetes, to being my own advocate in my diabetes care, raising my voice, asking questions, attending local diabetes events and volunteering my own time toward causes that I am passionate about.

While it’s true that diabetes, and more specifically diabetes blogging, has given me a lot of amazing opportunities, it truly is the community around the diabetes that has given me the most.

Four years ago, I knew next to nothing about diabetes. I was injecting insulin and checking my blood sugar, feeling very conscious of the people around me. I had no confidence in what I was doing. I was riding the rollercoaster, ever so helplessly.

Unfortunately the public system here in Australia, while fantastic, is geared toward clearing those clinic corridors and pushing the person with diabetes toward self-management as soon as possible. More so when you’re someone who is coping relatively better than other patients, even if it doesn’t necessarily feel that way to you.

For me, the lightbulb switched on when I first joined Twitter in 2015.

I had no clue that there was such a valuable resource in other people with diabetes available at the touch of my fingertips. I had no clue that talking to other people with diabetes was a thing, whether that be on Twitter, closed Facebook groups, Instagram, blogs, forums or something else. Those online connections eventually led to in person ones.

The diabetes community would have to be the single biggest thing that has helped me to live well with diabetes, both physically and mentally.

A great deal of what I have learned about diabetes has come from hearing the experiences of others. It certainly goes a long way in complementing the 99.9% of time that I spend outside the company of a healthcare professional.

It makes such a huge difference to know that there are others going through what I’m going through. I daresay that it even inspires, and motivates me to keep going in the daily grind that doesn’t end at 4pm on a Friday or the week before Christmas.

At the same time, I’ve also been authoring this little blog that you’re reading. Here’s the thing. I’ve always admired blogs. Long before diabetes came into my life, and also long before they were somewhat replaced by social media.

I blog for one reason, and one reason alone.

Myself.

I can’t speak for, or represent anyone other than myself through my words here.

However I do hope that through this little corner of the internet, I’ve been able to get some of that information out that I so desperately needed to find four years ago.

As I round out blog post number 500 here at Type 1 Writes, I can confidently say that this is my ‘why.’

Marvelling at the beauty of this building in Leichhardt, NSW, in the same way I marvel at how much diabetes has given me.

The Real Deal.

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I poured some dry packet mix into a mixing bowl on Sunday afternoon.

I added an egg and 40 grams of melted butter to the bowl, stirring it together with my wooden spoon watching it all combine together.

I scooped up little balls of this moist brown mixture, placing it carefully onto my baking tray 2cm apart. As I began to divvy up the remaining mixture among the 15 balls on my tray, my hands were beginning to feel sticky.

I had no temptation to lick any of the residual mixture that was stuck to my hands. I wasn’t even tempted to grab a small spoon from the kitchen drawer and devour all of the residual mixture stuck to the sides of the bowl.

As I opened the door to check on my creation that was baking away in the oven, there was absolutely no sweet aroma wafting its way towards my nostrils.

I kept poking and prodding at my browning vanilla almond biscuits, thinking that they felt far too soft for biscuits. After pulling them out of the oven and letting them cool for 15 minutes, they were still yet to harden despite having exceeded the cooking time. After putting them back into the oven for another ten minutes, I felt that I was at risk of burning them and switched it off.

As I later placed my cooled biscuits-that-didn’t-feel-like-biscuits into an airtight container, I was not even inclined to break one of these biscuits in half to taste. I sealed the lid and placed the container into my bag for the following day.

When I arrived at Monday evening’s meeting with my fellow Young Adult Diabetes Committee members, I placed the container of biscuits on the table. Despite watching my peers eat these biscuits and tell me that they were good, I didn’t really want one. Even knowing that the 1g carb count per biscuit would have minimal impact on my blood sugar couldn’t tempt me.

These vanilla almond biscuits that I had spent my Sunday afternoon baking were sugar free, sweetened with what I believed to be Stevia.

If this kind of baking is what you choose to do in managing your diabetes, then I completely support and respect you for doing so.

But if I am being absolutely honest, for me personally, low carb baking does not come anywhere close to the real deal.

I would much rather have those sweet smells wafting through my kitchen, lick my fingers clean, scoop residual doughy mixture from the side of my bowl, break a hot cookie in half, have the real taste of sugar on my tongue, swag bolus some insulin through it all and correct a high blood sugar afterwards.

Tribe Vibes.

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Walking into the Telethon Type 1 Diabetes Family Centre on Thursday night, I was expecting to see a bunch of 20 to 30 year olds gathered for the Community Forum.

I couldn’t have been more wrong.

Not only did I see young adults, but there were also teenagers, parents, right through to older adults (who I tend to naturally gravitate towards as a pretty mature minded person).

The Family Centre is a place to connect and support people living with type 1 diabetes in Western Australia. As the name suggests, this is a place not only for the person with type 1 diabetes, but also their family and support people.

The Centre was built on land donated by the State Government, with funding from both Lotterywest and children’s charity Telethon.

I’ve been following the Family Centre’s journey through Facebook and their monthly ‘blue balloon’ newsletter, with nothing but praise for their person centred approach to delivering clinical and social services to children and teens living with type 1 diabetes in Western Australia.

This, of course, is largely due to the centre being driven by people with a strong connection to type 1. The incredible show of community support that this place has gained in such a short space of time is a testament to them.

I first met CEO Bec Johnson, who lives with type 1 diabetes herself, two years ago when the centre was still fairly new and catering primarily to children and teens. You can check out my tour of the Centre here. One of the standout sessions at last year’s ADS-ADEA conference was hearing Bec speak about how she utilised the online networks that had once been her lifeline in building a service that the community wanted.

The Family Centre are now in the early stages of expanding their service to adults living with type 1 diabetes in Western Australia, with the purpose of Thursday’s Community Forum being to gather input into what we would like to see in an adult service. (If you have any suggestions, please do feel free to drop them into the comments).

I spend far too much time in the company of like-minded people. When I think about type 1 diabetes, I am definitely guilty of assuming that everyone is like me.

Hearing the diversity of experiences being shared, I couldn’t help but be reminded that not everyone has had the largely positive experience that I have. One of the challenges of this forum was translating people’s personal experiences and frustrations into their ideal support service.

Sitting in a room full of such diverse ages, I also couldn’t help but be reminded that type 1 diabetes will be with me for the rest of my life.

More choice for people with diabetes is always a good thing. I think it’s fantastic that adults living with type 1 in Western Australia now have another service and social space to support them in managing their diabetes.

If you search for ‘Type 1 Family Centre Adults Community’ on Facebook, you’ll find a newly launched closed Facebook group for Western Australians to seek peer support. I’m sure there’ll be more exciting developments announced over the coming months.

I was definitely feeling tribe vibes.

(and I take absolutely no credit for that term, or the title of this post).

“You Have Very Poor Control.”

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“You have very poor control.”

No mention of how I was feeling after my first couple of weeks living with a demanding chronic illness that would affect me for the rest of my life.

No mention of how my family, friends, peers, work and uni were treating me in the aftermath of my diagnosis.

No mention of how I was handling the insulin injections, finger pricks, food, physical activity, hypos, hypers and stigma of living with diabetes.

After a quick flick through my diabetes logbook charting some less than ideal blood glucose levels, I walked out of my very first endocrinologist appointment eight years ago on the verge of tears. This endo had clearly spent more time with his head buried inside a textbook than he had in the real world, and I was left feeling very little empathy for what I had been going through.

Despite several weeks of learning about diabetes under the wing of a very supportive diabetes educator, it took just one ten minute consult with that endo to undo what I believed was some solid progress in managing my diabetes.

That is exactly the reason why the language we use when talking about diabetes is so damn important to me.

I’m insulted when people think that this issue is about nothing more than political correctness over the phrase ‘diabetic’ or ‘person with diabetes.’ I honestly couldn’t care less which of these words you prefer to use. What I do care about is how your choice of words, sentences, body language and attitudes could impact others.

My diabetes educator could read my face the minute I stepped out into the hallway, and knew that something wasn’t quite right.

I tried to laugh it off. I told her that I hadn’t taken too much of what that endo had said to heart.

But man, those words hurt. They still hurt today.

Being mindful of language is about more than just being polite or trying not to offend someone with your choice of words.

The language we use when talking about diabetes has the power to create reality.

You can also check out my five reasons to be mindful of language when talking about diabetes in my latest column for Diabetes Daily.

And commit Diabetes Australia’s Position Statement on Language to memory!