Diabetogenic

Interweb Jumble #16

June 8, 2016 in Conferences, DOC, Health, Real life, Social media, Stigma | 2 comments

My head is full of lists:

Packing list
Travel checklist
Work to do list
Hug-the-kidlet-a-million-times-before-we-leave-her-for-three-weeks list
Diabetes-supplies-for-three-weeks-away list

And a list of great things I’ve seen online lately…

PLAID

Do you read PLAID – a research journal with a focus on people living with and inspired by diabetes? If not, you should. Why? Because it’s awesome!

Here’s the link to the latest edition. I’m really proud to have contributed to it because it is (as already mentioned) awesome, and this edition is all about the patient perspective. I sit very comfortable in there!

Unspeakably Wonderful

A new movie about Banting and Best and the discovery of insulin is hoping to be made by UK production company AngryMan Pictures. Details for how you can contribute to their crowd funding campaign are here.

Diabetic Living online

The Australian edition of Diabetic Living magazine has relaunched its website with a gorgeous new look. Check it out!

Totally (dia)badass

Get yours here.

Take 5 minutes…

…and read these great blog posts that have been recently published:

Anyone thinking of starting on an insulin pump and wanting a front seat view into what it’s all about should jump on board Type 1 Writes. Frank is a couple of weeks into his pump start and is sharing lots about what he is learning. I’ve been pumping for over 15 years now so have completely forgotten about dealing the challenges and successes of starting pump therapy.
Lots of posts coming in from people who were at #DXSydney, sharing their experiences of using Libre. This post listed all the people who attended with links to their blogs. Have a read and share your experiences too.
The Grumpy Pumper is a man of few smiles and, it would appear, few blog posts. Here is his first blog for the year. Pop by and leave a comment suggesting he blog more. Then it won’t just be me nagging him!
Awesome pics in this blog from Scott from Rolling in the D. He hacked his Dexcom and this is what it looks like on the inside!
Why do we need online communities? Anna from Glu gives some reasons here. And she’s right on every count!
Also from Anna, this profoundly moving and brave post about her recent pregnancy loss. These stories need to be told. Thank you, Anna, for sharing yours. I am so, so sorry for your loss.
This one is not a blog post, but a podcast. Stacey Simms produces some awesome podcasts over at Diabetes Connections. Do check them out!

Finally, if you’re looking for some more diabetes blogs to read, healthcare social media guru, Marie Ennis-O’Connor, has curated this list for you. There are 50 blogs to choose from. Get comfortable. Get reading!

Myths be gone

Team Novo Nordisk are doing awesome things to dispel myths about diabetes and address the issue of stigma. This latest video is terrific. Watch. And share. Share. Share.

Off to NOLA

It’s that time of year again. The American Diabetes Association Annual Meeting kicks off in New Orleans at the end of this week. I’ll be there, frantically tweeting.

I hit the road – well, air – tomorrow, so I’ll be out of touch for a bit as I embark on the nightmare transit. But I’ll be mainlining iced-coffee and beignets to keep awake and get in with it all.

Follow along at #2016ADA for the latest happenings in the world of diabetes.

New Orleans = Dr John. So here you go!

Owning our space

June 7, 2016 in Communication, Diabetes, DOC, Engagement, Healthcare team, Peer support, Real life, Social media | Leave a comment

Twitter is a great source of discussion and yesterday this tweet from a diabetes consultant in the UK certainly did start an interesting conversation that had me thinking.

I should point out a couple of things before going any further. The tweet, asking if lack of guidance in social media is a concern, was in response to a tweet from someone else who shared a post from a Facebook page about insulin omission for weight loss. This is a very serious issue – one that I have written about here, (and elsewhere), and worked on a lot in the last decade or so.

Also, the consultant was absolutely not suggesting that social media is a ‘bad’ thing, and he is actually an advocate and user of online platforms, so this is not about the individual. It is about the issue at large.

Obviously, I am a huge fan of social media. Apart from finding online – and more broadly, peer – support an important part of my own personal diabetes management, I have built a significant part of my career extolling the benefits of online connections and the value of sourcing information and support from others living with diabetes.

The changing landscape of diabetes information and support over the last ten or so years has been significant. With more and more available online, and more and more people being online, there has been a real shift from healthcare professionals being the keepers of information and deciding what people with diabetes SHOULD know to a more egalitarian framework from which to source what we need.

While some may believe this to be the end of civilisation as we know it, (dramatic, I know), I consider this change terrific, because instead of having very controlled and conservative information on offer, there is now a veritable smorgasbord of material – and knowledge – from which consumers can pick and choose. Personally – I love being able to do that. Hearing personal experiences and picking up tips and tricks about day-to-day life with diabetes contribute to me making decisions about how to manage my own condition.

One of the suggestions frequently made about how to safely use SoMe is for it to be better moderated. My argument is that the power and value of SoMe platforms is that it is not moderated. Being free to share my ideas and experiences without fear (or perhaps care?) of judgement is not only useful, but also cathartic. And getting feedback from my peers often provides a different lens through which I can view a situation. Much of what I have learnt would not be found in the pages of a textbook, or offered in the office of a HCP. And that’s fine – there are other very valuable and important considerations that are shared in that context.

The idea of moderating online support – or any peer support, actually – is about control. It can be packaged up into a nice parcel of ‘protecting’ the person seeking the information, but that is not only patronising, but also incredibly demeaning. There is enough of that going on in more traditional settings – peer support is where there is freedom from that control – and a freedom to explore different ideas.

For me, peer support has always been about finding my tribe and learning from them. It has been about finding a source of sustenance and care that makes me feel better about my situation. It’s never been about replacing or substituting what I get from my HCPs.

So what is the role of HCPs in our support space? My belief is that it is a place for them to learn. There are times that it may be appropriate – and even encouraged – for HCPs to step in and share. On Facebook, one of Australia’s leading CDEs frequently comments and adds to conversations in closed diabetes groups. Her professional advice is always spot on – never judgemental – and her personal perspective (she has diabetes herself) shows just how it is possible to blend the ‘What-I’m-told-I-should-do’ with the ‘And-this-is-what-works-in-real-life’.

But not everyone who wants to be involved in this space has diabetes, nor should we expect them to. But I think for me, I have a very clear understanding of online and peer support works – and what everyone’s role is. When this works well, it works because it is being led by PWD; they (we!) are the ones driving the discussion and the focus. It’s not dangerous. We don’t need guidance. Because it is our space and we own it.

What peer support means to me,

When sensitivity is a factor

June 6, 2016 in Hypo, Lows, technology | 3 comments

How’d your day start? Mine has been a blur of low blood sugar since the early hours. My head is in a fog, and I am confused at the insulin sensitivity that seems to have moved in and made itself at home. I am also slightly buzzy, (and more than a little bloated!), thanks to the 1750milliliters of juice I have consumed since just after 2am. That’s right: a litre and three quarters of pine-orange juice to keep my BGLs above ridiculously low levels and silence my Dex alarms.

It played out like this:

2.30am – After sleeping through 30 minutes of low alarms, I woke with a start and downed a whole juice box, not even thinking that I’d try for half and then see how I was going – because, really, I just wanted to get back to sleep. But with my alarms still screeching, my Dex still sitting below 3mmol/l and the obvious hypo fog settling it, I downed another box quickly. And, after 60 mins of low alarms, another box.

I spent 90 minutes or so desperately watching the Dex app on my iPhone, waiting for the trace to rise, (and wondering how the hell two adults with perfectly good hearing could sleep through the alarms!), all the while engaging in what this morning appears to be a most bizarre Twitter conversation with some UK friends. (Not sure what’s their excuse for the odd and slightly inappropriate exchange; their glucose levels were apparently fine.)

Eventually fell back asleep around 4.00am with three juice boxes spent on my bedside table and my Dex line sitting comfortably and arrow-less in the mid-fives.

7.00am – Morning alarm coincided with Dex screeching at me with an urgent low alarm, which had been going for about 15 minutes. More juice – this time just one box – before gingerly starting the day, keeping a very close eye on my CGM numbers, which refused to go above 4.7mmol/l. But at least they were staying steady and not dropping. Until…

8.50am – As the kidlet was loading herself into the car and I was speaking to my neighbour from two doors down on the street, another alarm. This time, the fall rate alarm showing a BG that was dropping quickly from 4mmol/l. Kidlet unloaded from my car into neighbours car for school run, neighbour shouting at me to stop talking and go get some sugar, me heading inside for another two juice boxes because one wasn’t cutting it.

Each juice box has 27.5 grams of carbs. I’ve had seven of them this morning. That’s a shedload of sugar and I feel nauseous, foggy and exhausted.

This is not the first time I’ve had a day like this. In fact, I’ve had a few.

And I have done the checklist for what it could be:

Lost weight? – Nope.

Weather warmed up? – No; it’s freezing!

Exercising more? – Don’t be ridiculous.

Other health issues? – No (except a head cold and that would not make me hypo).

CURED? – Well, maybe… although probably not.

There is no rhyme or reason to this at all. There is nothing I can point to change or fix. I just lower my basal rates, under-bolus and have stopped pre-bolusing for meals. I also am very cautious with correction boluses because most of the time, they are just not necessary. This is just a weird period of extreme insulin sensitivity. It’s happened before, lasted a month or so and then things went back to normal.

I expect that will be the same here too, although the complicating factor is that on Thursday I am heading to New Orleans, where the heat, conference hypo syndrome and the fun of travelling WILL be a factor in making me go low a lot.

I’ve made some changes to my low alarm thresholds so I am notified of impending lows sooner. I’ve made a couple of little tweaks to my basal rates. I’m making sure my phone is NEVER out of sight so the chance of a Dex signal loss is almost impossible. And I’ll just wait. Because sometimes that’s all there is to do.

A far too familiar sight at the moment.

(Almost) wordless Wednesday – a gentle reminder

June 1, 2016 in Real life | Leave a comment

With my most sincerest apologies to Neil Gaiman, this is gentle reminder that I really needed today. Happy Wednesday, everyone.

Image source

Words source

Sorry no more

May 31, 2016 in Diabetes, Real life | 7 comments

Recently, I heard myself saying to a friend with diabetes that she really didn’t need to – and shouldn’t – apologise for diabetes, specifically, for needing to stop to check her BGL while we were mid-conversation.

‘Don’t apologise,’ I said to her. ‘It’s just part and parcel of diabetes.’

And then, I heard how often I do it.

‘Sorry – I just need to treat this low.’

‘Sorry, darling. Would you mind just grabbing me a juice box from over there?’

‘Sorry – I had a lousy night with crap high BGLs and hardly slept. Would you mind repeating what you said? I missed it. Sorry.’

‘Sorry – my pump is wailing at me. Let me just see what it wants.’

‘Sorry – my CGM is alarming. I need to calibrate…hang on a sec…’

‘Damn. I’m out of insulin. Sorry. I just need to refill my pump.’

‘Sorry for munching on these glucose tabs. I’m okay – just trying to ward of a low.’

‘Sorry. My brain is foggy! I think I might be low….’

Sorry. Sorry. Sorry. Sorry. Sorry. Sorry. Sorry. Sorry…

Why am I apologising for my messed up beta cells? I didn’t destroy them. (Actually – technically I guess that’s not true. My own body did kill them off. But it wasn’t deliberate on my part…This is all getting rather confusing, so let’s just agree that it’s not my fault that I have diabetes.)

Why do I say sorry for having to treat or manage or address the health condition I live with all day, every day, and do things that I only do to keep me well…and alive?

I’m not alone here. Many others do the same. I’ve sat in rooms with friends having nasty lows and heard them apologise over and over again as they treat and will their glucose levels to rise. We do it amongst ‘friends’ – others from our pancreatically challenged tribe who get it better than anyone else, and we do it with those who are not living with it.

When I apologise for my diabetes, I am making it sound like I have done something wrong – intentionally or accidentally. And that is never the case. I’ve never intentionally been low or high. And even if it could be considered an accident or something I could have prevented – perhaps over- or under-bolusing or forgetting to refill my reservoir before leaving home – it was never done with the aim of being disruptive to others. Or myself for that matter.

What I am also doing is apologising for diabetes inconveniencing others. And I am also saying it is something shameful. But I can’t do anything about having diabetes. And it is not shameful. I am certainly not ashamed of having diabetes.

I wonder if it is a case of good manners going too far. Manners are very important to me – I have instilled this in our kidlet who is frequently complimented for her beautiful manners. But manners are about courtesy and respect – and that respect is for yourself as much as others. I think I am actually being quite disrespectful to myself when I apologise for having to ‘do diabetes’.

My body, which really doesn’t like itself, is not a reason for me to say sorry. I do enough managing diabetes without having to feel the need to repent all the time. So I’m not saying sorry anymore. Well, I’m going to try, anyway!

Sorry not sorry

Talking carbs

May 30, 2016 in Food, Health | 12 comments

‘Do you eat a lot of carbs?’

This was the question that had me stopping and thinking about my diet and how it has changed in recent times.

It is also a little bit of a taboo topic and I feel a little odd writing about it here. I really don’t care about being judged by others when it comes to my diabetes decisions, however for some reason, food attracts so much attention and judgement, I am somewhat reticent to write this post.

Firstly, and most importantly, please do not take this as medical advice. Or nutritional advice. In fact, there is no advice here at all– just some thoughts about what I do that seems to work for me. I am not a healthcare professional of any sort whatsoever. Please keep that in mind while reading.

I should also say that I had no intention to change my diet. It was just one of those things that happened slowly over time.

So what’s different? Well, mostly, it has to do with my carb intake. I eat considerably fewer carbs these days than I have in the past. Why? No idea. As I said, it wasn’t planned. It hasn’t been part of a no or low gluten diet; it certainly hasn’t been part of a weight loss strategy. And it utterly has not been part of an intentional low carb (high fat or otherwise) plan.

Honestly, I get a twitch in my right eye when I hear talk about low carb, because anyone who wants to suggest that I should stop eating doughnuts is, in my opinion, in need of a cup of tea and a lie down.

But even with this aversion to the LC idea, the thing I have found is that, by default, I have adopted a far lower carb diet than is recommended by dietitians and other healthcare professionals.

In my case, where this is has been most obvious is not in the ‘sometimes foods’ I eat. When I want a doughnut, I still eat a doughnut. Because as much as I write about them here, I actually only eat them occasionally. And that hasn’t changed. On the occasions I feel like a doughnut, I eat a doughnut.

The real change has come in the day-to-day foods I eat. Some of these changes include:

I cook and eat less pasta than I used to and when I do, there is more protein and vegetable-rich sauce dousing the penne or orecchiette or farfalle or macaroni.

If I make a risotto – again, a rare occurrence – the vegetable and meat component has been significantly increased so that I am getting a lower carb hit.

I eat breakfast only on the weekends (this has always been the case and always will be and that is all there is to it!) and will only ever eat half or, at the most, one slice of toast that comes with my eggs, bacon and avocado (or whatever I have ordered).

I don’t snack on carb-y foods – I’m now more likely to grab a handful of nuts than a piece of raisin toast.

I’ve stopped thinking that a meal is not a meal unless there is a large serve of carbohydrate on my plate. This was tough, because old habits die hard and the very first dietitian I met, the day after I was diagnosed with diabetes, insisted I eat ridiculously huge quantities of carbs with every meal and I stuck to that for a while.

I prefer sugar to artificial sweetener in my coffee, but instead of two sugars, I’ve cut down to one and sometimes, none.

Am I eating a low carb diet? Well, strictly, no. Is it lower carb? Yes, you bet! The Dietitians Association of Australia website suggests that an ‘average adult’ should eat 310 grams of carbs per day. I can’t think of the last time that I ate that many carbs in a day. (Looking back through my pump boluses for the last couple of days, my total carb intake is well under 100 grams.)

So, how does all this affect my diabetes management? Mostly, it has shown me just how much easier my diabetes is to manage when I eat fewer carbs. Low carb days result in far smoother CGM lines. Fewer carbs mean less insulin, which means less likelihood of lows, which means less likelihood of rebound highs, which means I ride the glucose rollercoaster less frequently. It’s an equation that makes so much sense and, for me, it works because, overall, I feel much better.

Is it right for everyone? Hell no! It’s right for me now, but who knows what I’ll be like in a few weeks time!

So why the hesitancy to write about this? Diet is a highly personal issue. But there is undoubtedly a real sense of reluctance to enter a debate about how a diet that is not necessarily endorsed by dietary guidelines may be beneficial to managing diabetes. I have too frequently heard HCPs shut down conversations about low carb diets – often low carb, high fat – however there are more and more people with diabetes saying this way of eating works for them.

Is this a case of the science needing time to catch up with what people are doing? I think yes. But I am not a scientist or a dietitian and I certainly don’t understand the science behind diet. But I know what works for me. And that is really all that matters in this case!

As it turns out, I made mushroom risotto for dinner. This huge mound of six different kinds of mushrooms was cooked with chorizo and onion before being stirred through a small amount of perfectly cooked arborio rice. A huge bunch of baby spinach leaves were stirred through at the end of freshness and a touch of green.

A place on the panel

May 27, 2016 in Awareness, Devices, Diabetes, Healthcare team, Real life, technology | 1 comment

The other night, I drove through the pouring rain to Geelong to speak at an information session for healthcare professionals about CGM technology. The event was run by AMSL, the distributors of Dexcom here in Australia (the disclosure song and dance can be found at the end of this post).

I sat on the panel with Dr Natalie Harrison, a terrific local endocrinologist (oh – how’s THIS for a bit of disclosure – we went to kindergarten together!!) and paediatrician and diabetes technology champion, Dr Peter Goss. I was there to bring the overall IQ of the panel down, share the ‘living with CGM’ story and be the point of difference between the glossy information presented by the CGM company.

On the left – the numbers of all readings in the glossy propaganda (it’s about 6.2 in our language). On the right – real life.

Both presentations by the doctors on the panel were enlightening. They clearly showed how CGM could be used in a number of different scenarios. The thing I particularly enjoyed was how both speakers are using this tech as tools of empowerment for the adult or child with diabetes – not for any other reason. Both repeatedly said that although in most of the cases they presented, there was a reduction in HbA1c, the biggest benefits to the PWD was improved quality of life. (I may have done a little fist pump each time they mentioned that!)

Examples included shift workers, tradies working on construction sights, exercise nuts, kids, adults, teens – demonstrating a terrific cross section of the diabetes community who may – and indeed have – benefitted from the technology. There was also a discussion about how CGM is useful in specific target groups and situations, with a considerable time of the discussion being about low carb diets and CGM. (And can I say just how refreshing it was to have this discussed with little judgement from the speakers. Too often LCHF or just LC is dismissed by healthcare professionals without any willingness to accept that there are many people who are using this as part of their diabetes management and achieving excellent results.)

Dr Goss also mentioned how useful CGM tech can be for families where ‘dead in bed’ is a real concern because it can show families just how stable glucose levels usually are overnight, and therefore may help reduce a lot of the anxiety parents feel. (There was also a discussion about the significant emotion around DIB and how it is frequently overplayed. This is really important because while one person dying from DIB is one person too many, it is thankfully a very, very rare occurrence (as shown in all local and international literature). The fear and the risks need to be in perspective and unfortunately, that is not the case at all times, and the anxiety it is causing is unnecessary.)

After the official, smart speakers finished, I stood up. At this stage, the AV equipment had called it a night, so I put aside the few slides I had developed, and shared a few things.

I spoke about why I love this technology and why I choose to use it pretty much all the time. But I also spoke about its limitations – specifically the emotional and psychological barriers that are of concern. I raised the point that reluctance to use CGM by PWD could be for myriad reasons and to never assume what that reason is (this was in direct response to the suggestion from one of the speakers that often PWD refusing to wear CGM have something to hide). I suggested that for some, it is a huge step to agree to wear something attached to one’s body all the time – something that provides a lot of confronting information, beeps, alarms and can be downright annoying. This is not a small consideration – it is big!

I also spoke about the necessity to customise just how PWD use the technology. I explained how I turn alerts on and off, depending on how engaged I am with my care. I could see that didn’t sit well with everyone so I tried to explain that being able to deal with – and respond to – a couple of alerts, is better than having the all on and doing nothing because it is too overwhelming. Or simply not wearing the technology at all.

And I also spoke about how what I do to make CGM work for me, even if it is against the direct advice of the company – and HCPs. Case in point, my sensor and transmitter are on my arm at the moment. I have found that recently, I get better readings and the sensors last longer if that’s where I site them. I also leave the sensors in for a lot longer than the suggested 7 days. (Peter Goss concurred with both those statements saying that most of the children and adolescents he sees prefer to wear sensors on the upper arm. And there was a bit of a ‘who leaves their sensor in the longest’ discussion, with Dr Goss sharing that the record in his clinic is 26 days. I did disclose that while I have a mental block about going beyond 21 days, I know people who have doubled that!)

This is why it is important to hear directly from people who use the technology. While both doctors shared case studies, the focus was really on how CGM helped smooth out glucose lines. And of course that’s important. But equally important is the way we manage the technology in our life, because if we can’t find a way to get it to work for us, we won’t wear it. After the presentations, a couple of HCPs thanked me for being there and said that I had raised a number of things that they just had not considered before – all things that are usually missed when a PWD is not part of the discussion.

And it served as a reminder again that even though it is terrific to have people with diabetes represented in some ways in presentations at these sorts of events (or conferences, meetings etc.), the only way to hear the real story is to hear it from someone living it.

Thanks to AMSL for inviting me to speak, but more so, for putting a person with diabetes up there on the panel. We belong there.

Disclosure

I was invited to speak at this event by AMSL Diabetes, Australian importers and distributors of Animas and Dexcom. I was provided with product to speak at this event…. The team from AMSL did not hear or see my presetantio prior to the evening and the only direction I was given was to share my experience of using Dexcom. Which I did – the good, the bad and the ugly.

(For the record, although not really relevant, but I’m disclosing the crap out of everything here, I also use an Animas pump. That was wholly paid for by my private insurance company whose premiums I pay each fortnight through clenched fists of frustration as their premiums continue to rise. I also pay for the ongoing consumables needed to drive said pump.)

Judge-y tech

May 26, 2016 in Devices, Diabetes, technology | 8 comments

I am not the sharpest tool in the shed sometimes. In fact, there are many times that I wonder how I have managed to get to this stage of my life without doing some permanent damage, or embarrassing myself so monumentally that I could never leave the house again without wearing a disguise.

But even though I am sometimes a sandwich short of a picnic, I am still able to decipher between high and low blood glucose levels and understand what constitutes in range, below range, above range, stratospherically-above-range-so-do-something-now and about-to-plummet-to-new-depths-if-you-don’t-mainline-glucose (the last two are highly technical terms).

Yesterday morning, I woke up with a start and within 2.1 milliseconds, realised I was low. Really low. I reached over to my bedside table and scanned the Libre reader across my arm to this:

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There is some really useful information on that screen. The large font-size numbers confirmed my ‘I.Am.Low’ predicament. The graph is also useful (perhaps not while my glucose is sitting at 2.3mmol/l, but later on I was able to look at it and try to work out the reason for the rapid drop from 1am). The red line below my target range is also useful because it shows how long I had been floating around there before I woke.

The piece of not so useful information is the alert in the top left hand corner. A warning sign with the words ‘Low Glucose’

This is not only on the Libre. If I try to bolus on my Animas pump when my BGL is above range, the delivery steps are interrupted so that I can be told that I am high. I know, Sir Pump-a-lot. That’s why I am pressing buttons. I need you to do your thing and give me some insulin. It makes absolutely no sense to halt the process right now to remind me I am high.

I know I sound like I am whinging for the sake of it. I could just ignore the messages and focus on the fact that this great tech is helping me manage my diabetes is a really useful way.

But the problem with these little messages is that they are a constant reminder of how frequently I am out of range. It’s not enough just to see the out of target number, but my devices then do a little ‘ner ner ni ner ner’ song and dance about it too.

It makes me feel that a lot of time I am messing up and failing – because a lot of the time my numbers are not where they need to be. The last thing I need is to feel that my bloody diabetes tech is judging me. There is already enough of that in diabetes.

At least…

May 24, 2016 in Communication, Health, Real life | 7 comments

In one of my #DBlogWeek posts last week, I wrote that for the sake of my own mental health, I have learnt to not compare myself with others.

I was thinking of this the other day when I was involved in a conversation with a woman newly diagnosed with diabetes. She told me that she was really upset at the response from a close family member who, when told about the diagnosis and how distressed she was, responded with ‘It could be worse. At least it’s not cancer.’

I’ve had that said to me. Several times. And it is one of the most offensive things I have heard. I don’t really know how to respond to it, because it’s true, I don’t have cancer. But I do have diabetes and that is pretty bloody horrible sometimes. (For the record, I equally dislike the idea of responding with ‘At least it’s not cancer. There is a chance of remission with cancer; type 1 is for life…’)

I get just as annoyed when it happens in our community. ‘At least it’s not type 1,’ is something I have heard said to people with type 2, diminishing the challenges they may face.

When I was anxious about my impending cataract surgery a few years ago, I was told ‘It’s nothing. At least you don’t have to have laser or have your eyeball injected.” Again, that’s true. But I was still terrified and had every right to be.

When discussing a nasty hypo ‘At least you didn’t lose consciousness and wake up to a roomful of paramedics.’ Sure, I remained conscious throughout the low I had last week. But I needed help to treat it and it happened in front of my kid. She was scared which really upsets me and makes me feel guilty.

When our experiences are belittled or minimised, it means we may stop sharing them. No one wants to be told they are being a drama queen and that it could always be worse. Of course it could be worse, but that doesn’t mean what you are dealing with doesn’t suck.

I have had diabetes for 18 years now. I have not had to deal with debilitating complications. I have not had to spend weeks in hospital because of my diabetes. But does that mean that my fears and concerns and anxieties are any less relevant than someone whose experiences are different?

And that’s why you will never hear me say to someone newly diagnosed ‘At least you have just been diagnosed. Just wait until you have had diabetes as long as me and <this or that> happens,’ because everyone’s experience is different and that newly diagnosed person may have their own concerns at that particular time. Or not. Which is also fine.

I had a healthcare professional once tell me that at least I didn’t have diabetes ‘too terribly’, because I worked, had a child and travelled. It was one of those (incredibly rare) moments where I was stunned into silence. I was torn between wanting to say ‘Well, surely that makes what I’ve achieved all the more incredible‘ and stabbing her with a fork. I said (and did) nothing.

There is no ‘at least...’ when it comes to diabetes. There is no discussion about how it ‘could be worse’. Because the truth is, it could be a whole lot better. I could NOT have diabetes.

Could be worse

The Libre verdict

May 23, 2016 in Devices, Diabetes, Real life, technology | 16 comments

I have now been wearing the Freestyle Libre flash monitor for ten days and have some initial thoughts to share.

I wasn’t sure what to think of the Libre before using it. I had heard stories of people absolutely loving it and other tales of people not really being all that impressed. I was certainly excited to try it, as I am with any new technology and was interested to see how my experience compared with friends who had already had a go.

I went in with a very open mind, albeit a mind that has been completely and utterly won over by Dexcom and CGM technology.

Overall, I love this device and can see why, where and how it would be brilliant for some people and now, after a week and a half, have a better idea of where it fits in my diabetes management.

The Good

The insertion was simple. I could go into a whole lot of detail about how it works and what it looks like, but a very clever young lady has made a very cool video of it and she is far cuter than me. You can see it at the end of today’s post. (The caveat to this is that Ms Pumplette in the video is under 18 years and, at this stage, the Libre only has TGA approval (i.e. in Australia) for adults.)

I will just add that it was completely painless for me. As in: Did. Not. Feel. It.

The device is discreet. I have mine attached just under my upper arm, so it is completely hidden, even when wearing a short-sleeved shirt. This placement also means less likelihood of ripping it off on a doorframe or similar. The profile of the Libre sensor is fabulous – tiny, flat and completely unobtrusive. (But if you would like to pimp it, of course there is a cottage industry making lovely patches to stick either over the top of the white disc, or to augment the tape around it.)

I have found the device to be incredibly accurate – when compared with both my BGL meter and Dex. We were warned that new sensors could take up to 24 hours to start to read accurately, however I found the new Libre sensor to sync with my devices as soon as the 60 minute warm up period was over.

Obviously, one of the biggest selling points of the Libre is its convenience and there is a lot to be said for the incredible ease of just scanning a device over my arm rather than doing a BGL check.

I had a couple of Dex-less days and found that the Libre was brilliant, especially considering that within 2 hours of my last Dex sensor dying, I had a horrid hypo that left me feeling vulnerable and scared and more than a little fragile. I had the Libre scanner in my back pocket (replacing my iPhone as the reader for my Dex) and was scanning every 30 minutes or so which was very reassuring.

The less good (I am reluctant to use the word bad here)

The cost is going to prove prohibitive, with sensors coming in at $95 each, which is above both Medtronic and Dex sensors. Being factory set, there is no possibility of extending the 14-day sensor-life. I’ve not used Medtronic sensors for a while now, but from what I read, most people get a max of 14 days out of theirs. I get about 21 days from a Dex sensor – at which point I rip it out because I start to get a little grossed-out. (But I do know people routinely leave theirs in for longer.)

The reader/scanner for the Libre is $95 and is rechargeable. This is certainly a point of difference when comparing with CGM transmitters, which have a battery life of either 3 or 6 months (depending on the product you use), and cost significantly more. (Add a CGM receiver to the cost and the price goes up a whole lot more.) This is where the affordability of the Libre runs rings around the CGM devices.

I just want to quietly flag supply issues which I hope will not be a problem here in Australia. The Libre is not quite available for purchase here in Australia, but is only weeks away. At DX2Sydney, I asked if there are any supply concerns similar to those that plagued the product’s release in the UK and EU and was assured that there really should not be here in Australia. I suspect that part of the reason the launch was not immediately after TGA approval was to make sure that there would be product available.

The verdict for me

So, is this a product I would continue to use? Well, yes. And no.

I really like and I trust the Libre. Accuracy for me is THE most important measure when it comes to any diabetes device (whether that be measuring my glucose levels or delivering insulin). From that perspective, I found this to be a winner.

But the lack of alarms is a problem for me. As someone with impaired hypo awareness, being able to catch those lows is important and I can’t do that without a system that warms me. The Libre doesn’t do that.

HOWEVER – this is not a CGM device and therefore, I understand I need to frame it in that way. This is a replacement for BG monitoring and BG monitors do not alarm and I have no expectation that it will. Despite being a sensor, the Libre is meant a substitute for finger pricks and meters. Currently, I check my BG twice a day to calibrate my Dex. If I was not wearing CGM, I would absolutely use Libre over a BGL meter any day.

Pumplette talks Libre

DISCLOSURE (again!!)

DX2Sydney was being coordinated and run by Abbott Diabetes Care. The costs for me to attend the two day event (travel, accommodation, meals and transfers) were covered by Abbott. All attendees received Freestyle Libre products (one scanner and two sensors) so we could trial the new device.

There was no expectation that I would write about the event or my thoughts of the device. Abbott may have paid for me to attend, but they did not pay for my words on this blog, social media activity or anywhere else. I like to share, so that’s why I decided to write about my experience.