Month: October 2018

Why I’m Opting Out of a My Health Record

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Back in July, as I was no doubt scrolling through Twitter, news broke of the commencement of the opt our period for My Health Record. I did feel a little standoffish upon learning that I would have a My Health Record automatically created for me in November without my permission. Naturally, I was leaning toward opting out of it.

I guess a My Health Record is like a digital version of the charts that my doctor and Diabetes Clinic keep on me. The idea of the digital My Health Record is that this information would be accessible to other healthcare professionals or places of care that I may choose to visit now or in future. I hear that I would still have access to this information, and control who I choose to share it with.

I guess, in theory, it’s not a bad idea.

Every new healthcare professional that I see would have all of my information available to review prior to a pending appointment. This would mean that they would be better prepared upon my arrival, and we would be able to make better use of the very limited time that we have together.

I wouldn’t need to complete forms while I am seated in the waiting room, asking the same questions over and over again.

I wouldn’t need to explain that I have type 1 diabetes, or have to endure the looks of confusion on my healthcare professional’s face, as though I’ve just complicated our whole appointment by flagging my health condition.

I wouldn’t have to respond to thoughtless questions about how ‘controlled’ my diabetes is, because my healthcare professional would be able to see a summary of my ‘compliance’ by attending diabetes checkups. Nor would I need to reframe my healthcare professional’s view that diabetes is something I continuously ‘manage’ rather than something that I am able to permanently ‘control’ (or not control!).

There would be far less errors in care or courses of treatment given, thanks to all of this additional information available prior. The quality of the care I receive would be richer, and I would walk away feeling that my time in the company of a healthcare professional was productive.

In theory, it’s a nice idea. I only wish that I believed it.

I expect that many healthcare professionals, particularly those in public care, would be far too busy and ‘stretched thin’ to thoroughly review any additional information they have on me via a My Health Record, particularly that pertaining to my type 1 diabetes.

I expect that there would still be errors in the courses of treatment given, particularly among those who aren’t able to advocate for themselves. I’ve seen a few loved ones now sent home from hospital well before they should in order to clear a hospital bed, watched them suffer at home for a few days, only to wind up back there a couple of days later.

People who don’t have the luxury of being well connected, or able to pay for private healthcare services are often pushed onto long waiting lists or left to fend for themselves.

Earlier this year, I only just received a referral to dermatology that my endocrinologist gave me four years ago (safe to say I had completely forgotten about that one!). People newly diagnosed with diabetes often tell me that they were told to exercise and lose weight by their doctor, but aren’t being linked in with the allied healthcare professionals who can actually explain to them what that means.

Sorry to sound skeptical, but I don’t believe that a My Health Record will enrich the quality of care that I will receive.

But maybe you do. That’s great! Regardless of where you stand, it’s important that you do your homework and make a decision as to whether you would like a My Health Record automatically created for you. The official website is here, and you’ll need to opt out before November 15 if you feel it’s not for you.

I will also leave this video here. My friend Emily, who lives with type 1 diabetes, was featured in this video endorsing My Health Record.

Forever Learning

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“I never get it wrong. I just learn for next time.”

If there’s one quote that truly resonates with me in the way I manage my diabetes, Grumpy Pumper summed it up for me perfectly in a tweet that surfaced this weekend from the Sports and Exercise Weekend he was attending in the UK.

The biggest piece of diabetes wisdom that I often impart is that time and experience is my biggest asset in living with diabetes. Because each and every one of those valuable hours spent managing my diabetes have taught me something. Like only bolusing for 60% of the carb count on my banana. Or living to regret every hypo that I’ve treated with something nicer than skittles or glucose tabs. Or remembering to bring a spare of everything with me.

I am a bit of a perfectionist in the way I manage my diabetes. I meticulously monitor my basal rates, count my carbohydrates, time my insulin to the kind of food I’m eating and give deep thought to the physical activity I undertake each day. It’s no simple equation, by any means.

My biggest downfall is that I don’t handle it very well when things don’t go to plan. I can often be found swearing out loud in front of my meter, verbally expressing my frustrations.

Yesterday was one of those days, as I found myself low twice after my breakfast and wondering how today had been any different to my other mornings of late.

As I sat in my desk chair at work, recalling the actions I’d taken that morning, two particular things came to mind. The first being correcting a blood sugar of 7.1 upon waking up, ignoring the insulin I already had on board from an earlier correction (and perhaps if I’d washed my sweaty bed hands prior to checking, the number may have been different). The second being the ginormous orange I added to this morning’s brekky. As I searched through my Calorie King app, I learned that oranges had 5.5% carb content, rather than the 8% I had in my head.

Living with diabetes is a constant learning process. I still surprise myself at how much I continue to learn after a good two and a half years of more diligently managing blood sugars. I wonder if I will ever live to see the day where I’ve learned everything that there is to learn.

What I do know, however, is that I don’t feel so guilty for my blunders when I can identify reasons for them.

Frank’s First Week on the t:slim!

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Frank still can’t believe that he has a t:slim tucked away in his left pocket.

It feels so surreal.

(In his determination to get a t:slim, Frank has even began referring to himself in the third person in his own head, which he really should stop doing now).

As trusty and reliable as my late Animas Vibe was, it was definitely outdated. Quite frankly, it looked like a game of tetris from the ‘90s. It wasn’t particularly attractive. The skin quickly began to peel. It wasn’t particularly easy to navigate, when compared to the smartphones we use today. Animas had failed to throw research and development at that pump to bring it into the 21st century, which is likely a big part of why they decided to exit the market.

I know all of these things may sound superficial, but when you’re talking about a $9,000 device that is attached to my body 24 hours a day, it really does matter.

I’ve only been using this pump for a little over a week, but quite honestly the transition has been seamless. The t:slim combines the features that I’ve come to rely on in my Animas Vibe, with many enhancements that I’ve been longing for in quite some time.

The bright touch screen on the t:slim is so much more convenient and sophisticated (although not exactly easy for oversharing bloggers to photograph). I am no longer reliant on up or down buttons to navigate through the pump. I no longer need to scroll to reach my desired number to input into the pump. I can simply touch the menu item on the screen, and type in my numbers.

Another feature that is proving useful is the basal profiles. Within each time segment, I can also set custom carb ratios and correction factors. So when I’m on my feet at work at 9am on a Monday morning and more sensitive to insulin, I can set a custom carb ratio to reflect that, rather than having to manually adjust every single time. Thoughtful little things like that really do make a difference to my life.

I’m also really happy with the wearability of the pump. When I’m at work, it truly is slim enough to tuck into the waistband of my trousers, leaving my pockets completely free. While it is a little heavier than my late Animas Vibe, it’s hardly noticeable thanks to its size and sleekness.

A big shift from Animas is the rechargeable battery. Unlike a smartphone, I have been told that I do not need to worry about damaging the battery with my charging patterns. I’ve been plugging it in before I jump into the shower every day. It charges super fast, and so far that ten or fifteen minutes in the bathroom keeps the pump battery topped up at close to full capacity.

I’m really happy that I can continue to use the Animas sets that I’m most comfortable with, so no massive adjustment needed there. The nobbly luer lock connection, which was concealed on my Animas pump, is a little annoying when I go to tuck the pump line away or pull it out again. But it does guarantee me lots of options should I need to switch infusion sets in the future.

Filling an insulin cartridge is a little different as well. Insulin is basically drawn into a syringe, and then injected into that little white hole at the top of the cartridge (next to the line). Given that I can’t see inside the black insulin cartridge, the key is making sure there are absolutely no air bubbles in my syringe. I’ve only filled a cartridge twice so far, but it seems simple enough.

I also like that the cartridge can hold 300 units of insulin, which conveniently uses up a whole penfill cartridge in one sitting. Although apparently I’m only supposed to be filling three days’ worth to minimise the risk of insulin spoiling? I’ll leave you to guess what I’m doing with that one…

Most of my bolus deliveries take a good minute or two to complete, due to a back and forth motion happening inside the insulin cartridge that slowly infuses bolus deliveries. It’s just something to be mindful of when delivering a larger bolus.

The one thing I dislike about my t:slim is the pump clip, which I have been unable to use. The clip is attached to the rather chunky t:case, rather than the pump itself. This doesn’t exactly make the t:slim all that slim!

Another irritating thing about this pump is how demanding it is. The screen blacks out with three mis-taps. I’m frequently alerted when I don’t complete a bolus, or if I’ve been running a temporary basal rate for a prolonged period of time. While these may be helpful to some people, my pump should be able to realise how switched on I am.

While pump data can be uploaded to Diasend for review, I’m also looking forward to the t:connect app eventually launching here in Australia. Just like wireless blood glucose meters, it’ll be great to wirelessly sync my pump data to my iPhone for instant review.

It’s still early days, but it’s hard for Frank to find much fault in his t:slim.

It’s nice to finally have an insulin pump as modern as my smartphone and the other devices that I use to manage my diabetes.

#TslimForFrank!

Disclosures: AMSL Diabetes bumped me up to a priority transition to the t:slim after seeing all of my cheeky #TslimForFrank comments on social media. As an existing AMSL customer using an in warranty Animas Vibe, I was eligible for a free upgrade to the t:slim as per their transition program. The upgrade was treated as a replacement for my late Animas Vibe, which I was required to send back. I have not been asked or paid to write about the t:slim, and these opinions are entirely my own.

Dawn Phenomenon, Spring Style.

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My levels have been a bit of a mess over the past couple of weeks.

A few weeks ago, I began to notice my blood sugar levels slowly but steadily rising through the night. I found myself waking up to blood sugars of 8 or 9 at around 2am and giving a correction, only to find it had little effect by the time morning rolled around.

After I had ruled out any after effects of afternoon snacking or evening meals, I began increasing my overnight basal rates until I had curbed that steady rise.

But I still hadn’t quite managed to clean up the spill.

To add to my woes, the FreeStyle Libre sensor I’m wearing at the moment to fine tune those rates has been producing long flat red lines through the night – the kind of ‘LO’ readings that make me a walking talking miracle. Thankfully, multiple finger prick readings quickly confirmed that Libre is at fault, and not me.

I’m usually quite tuned into carb counting, protein and how I bolus for my meals when I’m on my feet at work. Yet morning after morning, I would bolus for my breakfast and find my blood sugar spiking into the teens. Those highs would carry through into my morning tea and lunch.

Eating is something that I can’t really afford to be skipping at the moment. I’m working on packing more into my meals to fuel my active days so that I don’t feel so dreadfully exhausted and limping into bed at night. I’m a better person for it.

As I was setting up the basal profiles on my brand new tslim over the weekend, a mental lightbulb flicked on in my head.

If I had increased my basal rates through the night to cover my dawn phenomenon, why hadn’t I increased them to cover my insulin resistance the moment I wake up?

I have been tinkering my overnight basal rates back and forth since I began pumping insulin two and a half years ago.

I have a theory that the lighter mornings during Spring and Summer enhance that insulin resistance in the wee hours of the morning, compared to the darker days of autumn and winter.

After upping my waking basal rates by 25%, in line with what I had done through the night, I’m hoping I have a better week in store for me.

JDRF One Walk

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Yesterday, I braved a wet and blustery Sunday morning to participate in the JDRF One Walk.

I’ve heard of these walks that happen all over the globe each year, with a goal of funding research into a cure for type one diabetes.

To be honest, I don’t know too much about what JDRF does, but perhaps I’m not looking hard enough. However I do know from my own peers in the diabetes community, just how phenomenal JDRF’s impact is through the passionate individuals who are actively raising funds. Thank you.

My effort was, quite honestly, a last minute and half-arsed one. I joined to provide some moral support to my fellow Young Adult Diabetes Committee members, who as a team impressively placed sixth or seventh for funds raised. Go, team!

I am truly inspired by some of my peers who have impressively ran marathons while managing their diabetes in the name of charitable causes. I feel that if and when I do decide to ask the people around me for money, it should be for a cause that I am truly throwing my energy and efforts behind. This was not it. That idea is still sitting in the ‘some day’ basket in my brain, but one that I haven’t lost sight of.

It seems my effort in managing my diabetes around the walk was equally poor. After waking up to a blood sugar of 9.8 thanks to pizza the evening prior, I knew I was off to a less than ideal start. Correcting at the start of a walk that I thought would last ten or fifteen minutes, ended with a low at the finish line an hour later.

The blustery 5km walk took us across the Swan River, down the foreshore, over the new Matagarup Bridge, past Optus Stadium and back to Burswood Park where we were greeted with some rain.

I was equally rewarded for my efforts with a truly dreadful coffee from the coffee van, and overripe bananas from the Coles stand.

This was my first time participating. I had some excellent company around me, and I definitely haven’t lost sight of putting more effort into actually doing something like this. Some day.