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My A1c came back a few weeks ago in my target range. As soon as I saw the number, I said to my endo: ‘It’s because of this,’ and I gently patted my arm where my Dexcom was sitting firmly, doing its thing.

I was right. Wearing CGM fulltime has allowed me to better understand what is going on with my glucose levels and how they responds to a variety of different factors.

Puppy on my lap and CGM on my arm.

But it’s only part of the picture and the more I’ve thought about it, the more I’ve come to realise it. I’ve been using CGM almost fulltime for four years now, yet this A1c was ‘more’ in-range than any other in that time.

It can’t just be the device.

No, it’s when I add the low(er) carb way I’ve been eating to the equation that the improvement starts to make sense.

The most obvious thing I noticed when I started eating lower carb was that my CGM trace stayed far straighter for far more of the time.

Before I started eating this way, I’d see a lot of spikes. Sure, I’d come back into range after an hour or two, but there was a good while there that I was above range while I waited for the insulin to do its thing with the carbs I’d just ingested. Insulin isn’t perfect; its action can be unpredictable.

Eating lower carb means the spikes just don’t happen as they used to. Of course there are other contributing factors that do cause my glucose levels to head out of range, but by eliminating – or rather minimising – the one that is most responsible has resulted in a significant change.

So, what is that change? It’s all about time in range (TIR).

And that is how I now measure my glucose management. It’s not about A1c – I don’t like averages because they conceal a lot of what is going on. The A1c average might be a pretty number, but what is going on outside that number to get there?  But when I look at how much of the day is spent in range, there is less place to hide. It is starkly clear the days that I am within my upper and lower limits.

And there is a flow on effect from more time in range. When I think about how I feel on the days that I am far more in range than out, I feel better – more energised, more focused, more able to just get things done.

CGM data easily provides me with this data (and flash glucose monitoring would as well) so I can see at a glance just how much of each day is actually spent in my target range. This means that I don’t really care about what my A1c is. It may creep up a little bit, but if overall I am spending more time in range, then I’m happy.

This is just another reason that A1c measurements are flawed. It was first recommended as a way to measure diabetes management back in 1976 and a lot has happened in diabetes since then. I’m certainly not suggesting that we throw it out the window. But I am saying that with new (and some not-so-new) tools to provide even more information – more meaningful information – I certainly am not using it as the only way I to track and measure how I am going.

TIR. I’m calling it the new A1c! (And adding yet another acronym to my diabetes lexicon…)

Want more? This great piece about ‘going beyond A1C’ from diaTribe is a must read.

I’m a little cranky this week. At least, that’s how it may seem with some of the ways I’ve been responding to things I’ve seen online.

Yesterday, mice were cured again which was awesome and wonderful if I were a mouse, as suggested in the photo to the right.

Alas, I am not, so I felt the way I usually do when I hear of diabetes disappearing in rodents – ambivalent, as I crabbily pointed out to anyone who would listen. (It was quite timely when this article came across my radar which did a good job explaining how mice and humans are different and therefore what works for a mouse may not work for a Renza…or any other human.)

And then there was Monday’s post about the Twitter discussion about how much power and influence healthcare users have in the healthcare system (spoiler alert: the answer is very, very little…).

But today, I’m writing about an ongoing Twitter discussion that has me shaking my head for different reasons.

I wasn’t around the diabetes world when home blood glucose monitors came onto the market. I was handed a meter the day I was diagnosed in 1998, and I was able to take myself off to an NDSS outlet and pick up strips. Blood glucose monitoring was expected then, and I was easily able to access what I needed to meet the recommended glucose monitoring treatment I was prescribed. I remember being told just how essential it was that I prick my finger and check my glucose levels before meals and before bed – at least. This was the technology that was readily and affordably available to people in Australia and healthcare professionals were very, very in favour of using it.

But it wasn’t always the case.

In the early 1980s, home blood glucose meters started being offered to people with diabetes to take home and use. It was the start of self-monitoring blood glucose (SMBG) – before this, it was all about weeing on a stick and analysing colours. The advent of SMBG is certainly one of those moments on the diabetes timeline that stands out as an important step in diabetes management and improved care.

At the time, there was a lot of criticism of this new-fangled device, with many HCPs believing that it wouldn’t take off, the expense was needless and that there was not enough evidence to support the ongoing subsidisation of such technology. According to a short reflection piece to BMJ in May 1998, the introduction of SMBG had clinicians believing home glucose monitoring ‘a dangerous practice’.

As insulin pumps became more popular, the same attitudes were emerging and in 2001, when I decided I wanted to start on a pump, I had to doctor shop before I could find an endo who would agree to filling out the necessary paperwork. The reasons for refusing my request ranged from ‘You’ve not had diabetes long enough yet,’ (I started on a pump almost three years after diagnosis) to ‘They’re not safe’, and ‘There’s no evidence a pump will improve your A1c’, to which I replied ‘Okay – but will it let me sleep in on a Saturday morning and present more flexible food timings and options? Because my quality of life is seriously impacted on having to freedom to live my life because of the restrictions my current diabetes treatment regimen demands and I am becoming burnout and resentful of it right now.’

I wish I could say that these ideas ceased when I started on a pump, but we still hear today people being refused pump therapy for a litany of reasons that, quite frankly, don’t hold water in most cases.

And then, the arrival of CGM was met with exactly the same reaction. ‘It will make people obsessive,’ and ‘there’s no evidence to suggest that it actually improves clinical outcomes and A1c’ and ‘It’s a gimmick – we have blood glucose monitoring that works just fine,

This, despite a recent talk I attended at ADA where endocrinologist, Steve Edelman from TYOCD declared:

Which brings us to the the Twitter discussion this week which centred around FreeStyle Libre and concerns that there is not enough evidence to warrant subsidy of the product in the UK (following a report on the device from NICE in the UK). Arguments shared in 140 characters or fewer very much centred on the lack of evidence about the Libre.

I understand the arguments: clinicians were calling for randomised control trials (RCTs) to provide the evidence they feel comfortable with before they are willing to recommend a product: they want evidence to support clinical outcomes (i.e. lower A1c).

The problem here is that RCTs are costly, take a lot of time and often don’t measure anything more than clinical outcomes. Plus, they are rarely, if ever, co-designed by the people impacted by whatever is being studied.

It was the same sentiments as when other new tech was released into the market. Often it’s new diabetes tech that provides the user with more information, more data….and more control over how and what they are doing to manage their diabetes.

The pattern repeats itself each time there is something new: clinicians are wary (which, it could be argued is their role), people with diabetes are excited. In the case of Libre, I know of many people who, after years of refusing to measure their blood glucose due to pain and intrusion, have started actively monitoring their glucose and making meaningful treatment decisions due to the ease of Libre. One woman said that it has meant that for the first time in over a decade she feels she actually has some idea of what is going on with her glucose levels which has resulted in her making smarted food choices.

As I read the tweets, I started experiencing very strong feelings of déjà vu. And I also was once again reminded of why so many subscribe to the #WeAreNotWaiting movement. And I ask: Is it any wonder that people are hacking diabetes devices and building their own systems to do what we want them to – what they are capable of doing – now?

P.S. Just a reminder that there is currently a stakeholder engagement underway following a submission to list FreeStyle Libre on the NDSS. You can read all about it here (where you’ll also find the link to take you to the survey).

As someone who is rather passionate about the words we use when we are talking about diabetes, I was framing how I would respond in my endo appointment when I finally received my pathology results yesterday. ‘Path results are not a moral compass, Renza. They give you a snapshot of data and that is information to help you inform treatment decisions moving forward. Nothing more. Nothing less. Your value as a person is not based on the numbers on the paper.’ I repeated the words rhythmically over and over and over again.

And maybe, I almost started to believe them.

I walked into the office and sat down anxiously. With a smile, she handed me sheets of paper. ‘You’ll be happy,’ she said to me. She told me my A1c as she knew that was what I would want to know first.

I flipped through the papers, the numbers starting to blur. I heard the A1c number but the rest stopped making any sense. ‘I don’t know what I’m looking at all of a sudden!’ I said to her.

Ah,’ she said. ‘Let’s start with your kidney check because I know that always worries you.’

We went through all the other results too. I was smiling and almost bursting into tears. ‘I’m so pleased,’ I said. ‘I’m so pleased with myself.’ And it’s true. I was feeling good about myself. And then I stopped taking.

Of course I was pleased; the results were all good. The numbers were in my target range. All of the worries I’d had for the last week melted away. But along with the celebration, I was starting to feel uncomfortable.

If the numbers were not where I wanted, my response would have been disappointment and, perhaps a little shame. I would not have been pleased with myself, instead chastising my lack of effort and feeling I was not enough. Yet, the effort would have been the same regardless of the numbers on the page.

Try as I might, I cannot divorce the idea that an in-target number is somehow connected to my value as a ‘good person’, which translates to an out-of-target number means I’m not. I fight this idea all the time. I write about it, I talk about it, I genuinely thought I believed it. Does the entrenched messaging we are told over and over again by some HCPs mean we actually should assess our own value as people based on numbers (a pathology check, BGL check, CGM trace, weight, blood pressure….)? Can we simply not move beyond the judgement?

I pushed away the thoughts and tried to just breathe with the relief I was feeling.

I walked out, paid the bill and walked to my car. I decided that I wanted to share the good news with Aaron, and I sent him a text with my A1c result. He responded perfectly with a gorgeous message…and then brought me Tim Tams for dessert.

And while we were munching on those Tim Tams, I said to Aaron, ‘You know, I’m really pleased with everything here. I’m pleased with my A1c, but the thing that relieved me more than anything are these five words…’ I leaned over and pointed to the paper at the five words I was referring to:


And I breathed out. Possibly for the first time in a very, very long while.

Last Wednesday, I walked into a local pathology office, rolled up my sleeves, held out my arm and watched as the pathology nurse filled three vials of my blood to be sent away. I then peed into a little yellow-lidded plastic jar, placed the jar in a plastic bag and handed that to the nurse waiting outside the bathroom.

And then I walked out of the office, headed to one of my favourite cafés, sat down and worked for a few hours.

I’d like to say that’s end of a very boring story. But it’s not. It’s Monday today and for the last six days, I’ve not stopped thinking about those drops of blood and pee. (I know; slightly gross.)

This week on Wednesday, I have an appointment with my endo. It’s a follow up from my visit last month. I walked out of that consultation with the path slip in my hands and a promise in my head and heart that I would go and have the blood draw done and face the results.

It’s been a very long time since I last had my A1c checked. Very.Long.Time. As in – no freaking idea the last time. It’s also been a while (the same length of time, I guess) since I had any other diabetes complications screening. I’ve not had my kidney function measured or my coeliac screening done. With only half of my thyroid still in my body, (the right half was removed along with a benign tumour back in 1998), I should be having that checked regularly. But I’ve not.

I don’t know why I am so committed and diligent about getting my eye screening done, but that is truly the only diabetes screening that is always – ALWAYS – up-to-date.

So for the last six days, I’ve had many hours, often in the dark of the night when the rest of the household is sleeping, lying wide awake wondering what those drops of bodily fluids have to say. (Again, yuck.) That’s when the nasty self-talking me comes out.

The nasty self-talking me is destructive. She’s relentless and actually quite nasty. ‘I bet your A1c is high, Renza. Really high. And I bet that your urine test is going to show some problems with your kidneys. And you know what? If there is, it’s all your own fault for not being on top of it.

My nasty self-talking me hasn’t read the Diabetes Australia Language Position Statement and says things like ‘You’re totally non-compliant. You know that, right?’ and ‘You’re a bad diabetic. The results are going to not be good at all.’

Last night I dreamt that it was Thursday and I’d missed my appointment, and try as I might, no one would give me my results. I called my endo’s office and the receptionist told me that as I’d forgotten to show up for my appointment the results had expired and disappeared. And then she called me non-compliant and unreliable. (This is so totally not what would happen because she is delightful and lovely and no one in my endo’s office is nasty and judge-y.)

When it’s not the middle of the night and I am thinking logically, the usual self-talking me – the rational one – says sensible things. ‘Yep, you’re right. It has been a while since you had all your screening things done. But you’ve done it now and that’s awesome. Just sit tight until Wednesday and then you’ll see where things are. And if there are problems, we can address it then. Do you need a new pair of boots?’

And when nasty self-talking me says things like ‘Bad, bad diabetic whose A1c is going to be terrible’, the rational self-talking me says ‘It’s just a number. You know that. And if it is higher than you would like, you can put some strategies in place to bring it back to where you are comfortable.’

I like the rational self-talking me. She’s sensible and uses words I like to hear. But it does seem that when there is even a shadow of doubt, she is very much overwhelmed by the nasty self-talking me. And, boy, does she has some attitude! She makes me feel that I should measure myself by numbers. She makes me feel like a failure for not always staying on top of all my diabetes screening. She makes me feel that if anything goes wrong I am to blame. She’s nasty. Really, really nasty!

So right now, with rational self-talking me typing away, I’m putting this here for the next couple of days (and for future reference) when nasty self-talking me is the louder voice:

  • You are not defined by your A1c or any other number.
  • You are not a bad person because you have let some of your diabetes management slip.
  • If it turns out that the results are not what you hoped for – in any way – you can and will deal with that.
  • And it’s not your fault if that is the case.
  • Diabetes complications do not mean that you have failed.
  • You work bloody hard to manage your diabetes as best as you can at any moment and you should go and eat a cupcake right now to congratulate yourself for that.
  • If you feel that you could be doing better, work out how to make that happen. Your endo appointment on Wednesday might be a good place to start.
  • Tell that nasty self-talking part of you to piss right off.
  • And yes. You do need a new pair of boots.

After my pathology visit, I went to one of my favourite local cafes which sometimes has puppies to cuddle. How cute is Juno?!

Look at your social media profiles – and those of your friends – and what do you see? Most likely a highly edited and curated ‘best of me’ collection showing you in the best possible light.

This makes perfect sense. Of course the photos that we post of ourselves show us looking happy and smiley and as attractive as we possibly can. Because really, who wants to see us looking pissed off, grouchy and ugly. People around me get that in reality. They don’t need to see it in cyberspace as well!

A couple of weeks ago, in my jet lagged stupor, I sat there and went through my Facebook wall from the present day back through the seven years I’ve been using it. The things you see on my page are the following:

  • Photos – of my family and our travels, and of friends
  • Links to my blog
  • Links to other people’s blogs
  • Links to diabetes things
  • A lot about Nutella
  • A lot about doughnuts
  • Links to the music I’ve been listening to
  • David Sedaris links. Because he is funny and everyone should read him
  • Recipes – usually of cakes I intend to – and then do – bake
  • Photos of the cakes I bake
  • Photos of coffee. A lot of photos of coffee

But the thing is, it’s not what we put up on our SoMe profiles so much as the things we don’t put up there.

If you look at what I say on my Twitter or LinkedIn profiles or the ‘about me’ page on this blog or other places where I write, what you read are the highlights of who I am. It’s very much name, rank, serial number – the sort of information I would give on tax return. What you don’t read – what I omit (quite deliberately!) – are the things about my personality I don’t necessarily want you to know (like the fact that I am so grouchy in the mornings that my daughter often precedes her ‘Good morning mum’ with ‘Have you had a coffee yet, mum?’ or I have a fire-y temper when socks are not thrown in the dirty laundry basket or that I binge-watched the first season and a half of Revenge).

I think there are definitely parallels between what we show of ourselves online and how we present ourselves to our HCPs.

How many of us show up to our diabetes appointments and only show the very best of our diabetes selves? For whatever reason – fear of judgement from our HCPs, a desire to appear ‘good’ – we either deliberately or subliminally hide away something that is probably important, but we think casts us in poor light. We present as confident, capable, knowledgeable and ‘in control’ of our diabetes.

Sometimes the thing we hide is our A1c. We forget to, or simply don’t, have our bloods done before our appointments so there is no discussion about how we are going with our diabetes management.

The ability to leave out crucial things that are going on in our diabetes life means that whatever is actually discussed at out appointments is only, at best, a distortion.

There is no victory in this for us as the person with diabetes.

Omitting critically important things about our diabetes and how we are going – no matter how ugly we think they are or how ‘bad’ we think it makes us look – means that the person we have charged with working with us along our diabetes way only has a small bit of information.

And once we start along these lines it is really difficult to come clean. If we’ve been sharing only parts of what is going on – or (and I’ll just be brutal here) lying – ‘fessing up with the truth is a hard thing to do.

If you’ve been swearing to your HCP that you always, but always check your BGL 6 times a day and have the scrawls in your log book to prove it, it’s not really pleasant to admit that actually, it’s been three weeks since you last fished out your meter.

Also, I believe there comes a point where we perhaps start to believe our own stories. I know that in the past, I managed to convince myself that my lack of frequent BGL checking was pretty much justified because it didn’t matter what I did, I couldn’t fix what was going on. (See also I have brittle diabetes so there is nothing I can do.)

I don’t believe there is any real deceit here. I know that the times that I’ve gone in with my ‘all is great, look how terrific and shiny and sparkly my diabetes is’ attitude (when the truth is the complete opposite) I’m not being maliciously fraudulent. Usually it’s just because I can’t be bothered trying to work out what the problems are. Or I’m burnt out and really haven’t the energy to actually put in the work needed. (Yes, of course I realise that it at these times that being honest and getting to the bottom of things makes sense. Yes, I understand that in the long-term I’d feel better. Yes. I am an idiot.)

So what do we do about this?

It is easy for me to say that we should just be honest, tell the truth and deal with however that is received. But I know that is too simplistic. No one wants to face disappointment or anger or frustration. No one wants to be called out on the things that have been omitted. And, there is a strong case here to focus on exactly why we feel the need to hide things – in fact, I would argue that until that is understood we can never expect to be fully honest. And the worst part for me is that I say this in the full knowledge that my endocrinologist – the main person (poor thing) who I work with about my diabetes – would never judge me or make me feel bad about anything to do with my diabetes management (or lack thereof).

We need to stop curating our diabetes life and trying to turn ourselves into Saint BGL. Because no one is perfect. And no one’s diabetes is perfect. Ever. And the truth of the matter is that it is okay to lay it all out for all to see. The good. The bad. And the downright ugly.

Neil Diamond. 1972. Crunchy Granola Suite. No idea why. Why not? Have a great weekend! (P.S. If you can find a copy of Tony Martin on the D-Gen Late Show – circa 1992/3 – talking about this song, do it! Good Lord!)

Last month, my mate Mike Hoskins asked me to write something for Diabetes Mine. So I did.

It’s called A Word From Down Under, and I’m a little annoyed I didn’t add some commentary about throwing shrimps on the barbie, riding my ‘roo to work, or eating vegemite sangas. Missed opportunity.

Here it is!

diabetes mine

Within a two week period, I was dealing with the same issue on opposite ends of the world. Firstly, I ranted wrote about a child being told that his pump would be ‘taken away from him’ because his A1c was too high.

Then the following week at a conference far, far away, I was speaking with someone who can’t access a pump because her A1c is too low.

So apparently, if your A1c is high, you get your pump snatched away from you and if your A1c is in target, you’re not eligible for one.

Can you see what’s wrong with this picture? In both instances the decision as to whether or not a particular treatment option is being advised is based purely on a number. No consideration is given to things like quality of life, a desire for more flexibility, a desire to try something new or a love of gadgets. Or the simple ‘Because. I. Want One. Dammit’.

No – a number that provides nothing more than an average is being deemed the criteria for recommending (or removing) a therapy option.

Also, the decision for which management therapy will be utilised is being made not by the person living with diabetes, but their healthcare professional.

How do we win here?

I will never stop advocating the rights of people with diabetes to be THE person who gets to choose the way they manage their condition. But sometimes I feel the uphill battle gets harder and harder with more and more obstacles being put in the way and more and more hoops for us to jump through (metaphor much?).

There are days I really feel like throwing my hands in the air and admitting defeat. The more stories like this I hear, the more disheartened I become. When and how will the person with diabetes be put front and centre in the decision making process about their own diabetes? When will numbers stop being criteria to assess success or determine appropriate management?  When will the threats stop and the judgement end and true collaboration begin?It’s time for us to say: Diabetes – my condition; my rules!

 

I’ve lost a bit of weight over the last three or four months. Not intentionally, just because stuff has been happening and I forgot to eat. The truth is a lot more boring and not relevant to this blog at all, but the easiest way to explain it is that November last year was crazy-busy, stressful and little food was consumed. Whatever.

Apparently, it’s okay to comment on people when they’ve lost weight. And with it comes a lot of praise – as if it’s something of which I should be proud. But I know that the tough few months I’ve had is the reason I look this way, so when I stand in front of the mirror, I don’t see someone who looks good in what she’s wearing, I see someone who is looking tired and a little defeated.

It is another example of just looking at what is in front of us and not trying to work out what is going on behind the scenes.

My HbA1c is sitting in the low 7s at the moment which of course, would have every health professional alive patting me on the head and calling me a ‘good diabetic’. Well, thank you. But the reason for it is a combination of erratic highs and lows, and not eating much which does wonders for keeping a steady line on the CGM.

The truth behind results – whatever those results – can be more than a little deceptive.  And being the person I am, I want people to know the truth. Well sort of. I want people to know that I haven’t been trying to lose weight out of vanity. It metaphorically has fallen off me because I’ve been stressed and busy and barely eating. So the numbers on the scales (if I bothered to weigh myself) wouldn’t be a reflection of effort at all. Equally, my A1c isn’t because of hard work; it’s because the limited food has helped, and the highs and lows have averaged out. I’d feel like a fraud if anyone thought anything else.

It’s all too easy to take what we see at face value and assume that what we see is what is real. But the two are completely different things. I’m never sure how much I should pry into what is really going on in others’ lives and I certainly don’t want a million questions thrown at me. Is a ‘you look good’ comment all that’s warranted when discussing weight loss? And should an in-target HbA1c be taken as an absolute that needs no further investigation? Honestly, I don’t think so.

The devil is in the detail, I guess. But making assumptions and not delving deeper will never get the truth. It will only tell half the story.

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