Diabetogenic

Adapting

March 11, 2016 in Diabetes, Family | 1 comment

I often think I see diabetes where there isn’t diabetes. But I didn’t realise just how much diabetes has seeped into the subconscious minds of my loved ones, too.

Last night, we were all sitting on the couch watching some TV.

There on the screen, the actress reached down and pulled something out of her bag and held it up. It was her pager. (The show was from a few years ago. Clearly.)

‘Oh,’ said Aaron after a moment, sounding confused. ‘That’s a pager.’ And then he laughed.

‘Huh?’ I said. ‘What?’ I wondered what he meant. If course it was a pager. What else could it be?

‘I thought it was an insulin pump. I thought ‘Of course it’s an insulin pump.’ Because a small box shaped thing someone is holding in their hand has to be an insulin pump.’

So apparently, it’s not just me who sees needles in tall buildings or thinks someone must have high BGLs if they drink two glasses of water in quick succession. Even if I’ve no idea if they have diabetes.

My kid sees me rattling around in my bag for something and automatically asks ‘Are you okay, mum? Are you hypo?’ expecting me to pull out a juice box or some jellybeans, when really, I’m probably just trying to find a pair of glasses.

I yawn and my mum asks me if I had a lousy ‘diabetes night’ which kept me from sleep, when really, I am probably just tired because Aaron and I were binge watching House of Cards the night before. (Oh jeez – could Claire Underwood be anymore awesome and terrifying?!)

I look distracted in a meeting and my colleague asks if she can get me anything, thinking I may be low, when really, I am probably just trying to gather my thoughts and try to pull them into something cohesive.

Or, a black square box in a show from the early 2000s is actually just a pager and not an insulin delivery device.

Normalising diabetes. It’s what happens when it is part of the landscape for almost 18 years. And those around me have had to adapt. I love them for it!

Oh, I love the Friday afternoon before a long weekend! And this morning, as I climbed into my car this was playing, thanks to my husband who was in control of the music last time I was in the car. Great way to kick of the weekend!

The F word

March 8, 2016 in Advocacy, Awareness | 3 comments

I have never understood why people shy away from the word ‘feminist’. It is one that I have always worn as a badge of honour and one that most of the women around me are not afraid to use. Sometimes, we have roared about it, and other times we haven’t. But it always seems to be a guiding principle in the way we live.

I’ve always loved this Dale Spender’s quote (one that Senator Penny Wong quoted last night on Q&A in her eloquent explanation of why she calls herself a feminist) because it shuts down any ridiculous comments about feminism being something to fear, or ‘against men’, which is a load of bollocks.

I am not sure if the women around me I admire and love and respect would call themselves feminists, but I certainly see them that way. They raise each other up, celebrating successes, commiserating losses, rejoicing in each others happiness.

When I think about the people who have impacted most on my life since diabetes, they are just about all women. Today, my HCP team is exclusively made up of women and I have been seeing all of them for well over ten years. It took me a while to find the right people for what I needed and it just turned out that the ones who were most compatible were all female.

The people I turn to when I am confused or angry or struggling with diabetes are mostly women.

When I was dealing with the devastating aftermath of miscarriage or the exciting and exhausting exhilaration of new motherhood, the people I wanted to talk to were other women with diabetes who understood the extra demands that diabetes threw into the mix. These were the women who provided comfort and love and a (virtual) shoulder to cry on. And the call of ‘You can do this’ resonated strongly through them all.

I am raising a daughter and one of the things for which I am forever grateful is that around her – and me – at all times are women of great strength, intelligence, compassion, bravery, brilliance and talent.

She sees that every single day in my mother, my mother-in-law, my sister, my sister-in-law, an extended family of assorted aunts and cousins, and my circle of friends who are nothing short of genius.

She sees it in many of her own friends’ mothers who speak to their daughters the way I speak to mine, and she, along with many of her own friends are already demonstrating that kickass attitude that some hasten to shut down by calling them bossy and pushy. When really, they are showing they have the skill and courage to lead.

And she is starting to search out her own hero girls and women, admiring and quoting Malala Yousafzai, shouting about girl power, reading books with strong female protagonists and demonstrating utter shock, indignation and disgust to think that girls are not at all times considered equal.

And she sees me. While I may not be the strongest, brightest, most compassionate, most courageous or most brilliant of the women around her, I do set an example of resilience and kindness. And we use diabetes as an incredibly effective teaching tool to show her just how lucky we are, and how she shouldn’t ever take for granted the privileged life into which she was born.

She knows that diabetes around the world is not a level playing field. And, more broadly, neither is women’s health, whether maternal, sexual or reproductive. Where a baby is born impacts significantly on their health outcomes. As does gender.

It’s International Women’s Day today. While I am using the day to acknowledge amazing women – those who have come before, are here now, and are our future – I am also using it to remind myself that there is still so much for us to do. The gender gap is not closed – not by a long shot. We need feminism, we need activism and we need days like today to remember what still needs to be done before women around the world are truly considered equal.

Women Deliver is a global advocate for women’s health, rights and wellbeing and promotes the importance in investing in girls’ and women’s health. Take a look at see some of their great work, which includes the infographic above.

Lack of insight

March 2, 2016 in Awareness, Health | 9 comments

Last night, after a lovely dinner with a couple of diabetes mates, I rushed home to watch Insight on SBS. The topic was type 2 diabetes and diet, specifically, a very calorie-restrictive diet being promoted by Dr Michael Mosley.

I was particularly interested because the CEO of Diabetes Australia (my boss) was one of the guests on the show.

I don’t really want to write about the diet being presented on the show. I am not a healthcare professional and have no qualifications in dietetics, so I am not going to remark on the ins and outs of the diet being discussed or the claims that it ‘reverses’ type 2 diabetes.

What I am going to comment on is the Twitter commentary that accompanied the show. You can go back and have a read at #InsightSBS and see that some of the armchair discussion was pretty well-balanced, (special kudos to Warrnambool DNE, Ann Morris for her balanced tweets), but unfortunately, a lot of it wasn’t.

A couple of very well-known celebrity trainers* were tweeting along to the show. (*When I say ‘well-known’, I knew of one of them – Michelle Bridges – but had to be told who the other one was. I’d never heard of Commando Steve before last night. Apparently he is Michelle Bridges partner, so I like to think they were sitting together on the couch, tweeting and judging people. Birds of a feather…!)

On the program were a number of people either living with type 2 diabetes or who had been identified at risk of developing diabetes. So, so much credit to these people for going on a national television program to speak about living with a condition that so many know so little about.

I listened to their stories and heard how they were living with a complex and confusing chronic condition. I heard about how some had made changes that they felt they could manage, and others who clearly had so much else going on, that they simply were unable to make the recommended changes that may have positively impacted on their health.

Diabetes Australia CEO, Professor Greg Johnson (again – my boss, so consider the bias when reading this) said the following: ‘We don’t want to put people in positions of failure. Already they are in positions of failure in diabetes.’

And this is where the celebrity trainers jumped in. Firstly, this from Michelle Bridges:

And then this from Commando Steve (who I assume has a proper name?):

Their complete and utter lack of understanding of living with a chronic health condition shouldn’t astound me. Who really knows unless you are living it every day?

But surely they could show a little empathy, or acknowledge how tough dealing with a lifelong condition might me.

I would like them to suggest how we remove the ‘emotion’ from diabetes. It permeates every single facet of life some days, so tell me how we cast aside any feelings or emotion?

Commando Steve tweeted that ‘people will come up with all the excuses in the world not to take responsibility for their own health’ which does nothing other than lay blame, stigmatise and judge.

The simplistic approach offered by people like Bridges and Commando Steve will never address the real issues of diabetes. In fact, all they do is add to the stigma, which is one of the reasons that so many living with diabetes find it difficult to make changes. Way to go, guys. Your lack of ‘insight’ is shocking.

G5 thoughts

March 1, 2016 in technology | 1 comment

For the last few weeks, I have been trialling the new Dexcom G5 Mobile CGM. (And you bet there are disclosures about that. See the end of this post!)

I am very lucky. I get to travel quite a bit for my job and that means seeing what others are using to manage their diabetes. The G5 had been launched in other markets last year, so I knew all about the G5 after seeing it in action at the World Diabetes Congress in February last year.

I had also read a few reviews of it online and, as a result of the generally positive feedback, was ready to try it myself.

I have been using Dexcom CGM since it was launched in Australia three years ago. I haven’t used it for the whole of those three years, but it’s the only CGM I have used in that period.

In the last three months, I have been wearing CGM full time. I have come to rely on it but refuse to see that as a negative. This is simply a tool I use to manage my diabetes. End of story.

The G5 has a few new features which sets it apart from the earlier generation Dex. Possibly the most interesting is that the G5 is the first CGM which doesn’t require confirmatory BGL meter checks before responding to glucose levels. Basically, what that means is that apart from the twelve-hourly (required) calibrations, your meter can stay tucked away for the rest of the day.

(You can decide yourself if that is as exciting as the shiny brochures state. And you can read my thoughts on it in a previous post here.)

The other fancy-pants thing is the nifty (free) app that displays the CGM’s readings (via Bluetooth from the transmitter). So now, instead of needing to pull my pump from my bra to see what is going on with my glucose, I look at my iPhone. This took me a little while to get used to, but not needing to reach down my shirt, grope around and bring out my pump is actually quite nice.

The app also shows lovely (sometimes) graphs and alarms (which you can customise) for low and high BGLs and also fall rate. It looks like this:

Ugh!

Or this:

Also, the app has the ‘Share’ function, which means that I can share my CGM data with anyone I want! (Well, up to five people.) At this stage, I am not using this functionality; however definitely will when I am travelling solo. It has a lot of appeal for parents of kids with diabetes, many of whom love the fact that they can see what their kids’ glucose levels are doing during school hours of when they are not together.

Because the ‘receiver’ is now my iPhone (rather than my Vibe pump), the G5 must be sold with a separate receiver. This definitely affects the price of the start up kit (which you can read all about here). I have never used a Dex receiver before – I started using a Dex at the same time as starting on the Vibe, so used the integrated system from day one. And technically, I don’t really need to use it now. But I have been throwing it in my bag in the morning in case my iPhone dies, gets lost, or is eaten by aliens. (Yay for contingency plans!)

The G5 uses the same sensors as the G4, so there was no real learning curve there for me, with sensor insertions being second nature these days.

All of this is great. The app looks wonderful, the data is easy to read, it’s convenient.

But none of this really matters unless the results are accurate – especially now that we can dose directly from those numbers.

So is it accurate? I have always found the G4 to be incredibly precise. I was actually blown away when I started using the device at just how accurate it was. And the G5 delivers the same accuracy and then some.

Habits are hard to break and even if I had been known to dose directly from G4 results, I still would frequently check my BGL throughout the day – other than for just the required calibrations. For the first week of using the G5, I continued to do that, just because I wanted to check the accuracy. (I was, however, only entering the two calibrations into the system.)

The biggest difference between the Dex and my meter was 0.3mmol/l. Yeah – it’s accurate.

So – are there any negatives? Making sure my phone was in ‘Bluetooth range’ at all times took some getting used to – and this is from someone who is ALWAYS on her phone for some reason or another! I was actually surprised at the number of times that I would hear the ‘signal loss’ alarm because I was out of range. I have become a lot better at making sure my phone is in my pocket or by my side all the time.

I did find that there were some other ‘signal loss’-es early on, which I found very frustrating, but, again, that was most frequently to do with positioning of my iPhone. Or not drinking enough water one day!

The cost of the G5 system is going to be more than the G4 and that will definitely factor into decision making about which device to use. The G5 transmitter has a three month battery-life, meaning that four transmitters will be required throughout the year. Deciding whether or not the extra cost of the G5 is worth it will be made in coming months when I need to purchase the next transmitter.

But overall, I have to say that I really do love this tech. I do love the convenience of the app and I do love the idea of the share capability. But mostly, I love the accuracy and the peace of mind that gives me.

DISCLOSURES

The Dexcom G5 Mobile is distributed in Australia by Australian Medical and Scientific Limited (AMSL). I was contacted in February by AMSL and offered product to trial the Dexcom G5. I was kindly provided (free of charge) with a G5 transmitter, a G5 receiver and four sensors. I have not been paid any money to use this product.

There was no expectation that I would write about my experience of using the G5. I’m just sharing ‘cause I’m the sharing type.

More information about the Dexcom G5 Mobile in Australia can be found here.

Leapling

February 29, 2016 in Diabetes, Real life | 3 comments

We frequently say that diabetes is twenty-four hours, seven days a week, three hundred and sixty five days a year. And it’s true. It absolutely is.

But this year – a leap year – we have an extra day. I thought that the most wonderful way to celebrate it would be to take a day off – to have a day where I don’t think about it; don’t talk about it and don’t write about it.

But that’s not possible. Even if I decide to have a ‘low-diabetes-activity’ day, there is no way that I can’t take the day off completely. My pump is still attached to me, as is my CGM. I still need to eat food and that needs to be considered. My CGM needs calibrating, so I’ll need to do at least a couple of BGL checks. And I’ll need to respond to any highs or lows as they are thrown my way.

So, instead of ignoring, I decided that I needed to mark my diabetes in some special way and decided that an extra lancet change would be the way to do it. Actually, I’d be lying if I said that this was my choice. This morning, it took 8 stabs to actually draw blood (I know, I know…probably could have been changed sooner).

So, I replaced the lancet and have done a couple of lovely, easy checks with free-flowing, easily accessibly blood.

I was most pleased – and couldn’t stop laughing – to see that the team at Diabetes Mine were on the same page with this week’s Sunday Funnies cartoon.

So, there you go. That’s the way I am acknowledging this extra day of diabetes.

#LeapYearLancetChange

Hand us the microphone

February 25, 2016 in Advocacy, Awareness, Diabetes | 3 comments

‘You’ll be pleased to know that I represented people with diabetes very well in the meeting that I attended yesterday.’

The meeting was all about people with diabetes; making decisions about people with diabetes; looking at processes and practices for people with diabetes; discussing how people with diabetes access healthcare.

And in the room? Not a single person with diabetes.

I looked at the healthcare professional who told me that she had so well represented ‘my people’ and shook my head.

‘And yet,’ I said. ‘You are not a person with diabetes. Can you imagine how much more powerful it would have been to actually have people affected by the things being discussed in the room?’

I was reminded of this conversation, which took place a few months ago, this morning when I saw this from the folks at T1 International. (I’ve written about them before, but please check them out. Their work is so important.)

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T1 International is working towards adequate access to insulin and diabetes supplies, as well as healthcare for all people across the world living with type 1 diabetes. They are giving a voice to communities that are most often not heard by sharing their experiences and amplifying their stories.

But I wonder, what hope can there be for people in countries where diabetes is so tough if in places like Australia, where we have heavily subsidised medication and supplies (I know, I know – CGM is not subsidised), we are still not being given the microphone?

I never doubt the amazing advocacy initiatives that many healthcare professionals undertake for people with diabetes. It is important and necessary and I am so grateful for it.

However, there is an authenticity that can only be delivered by those walking the miles in our (diabetes-appropriate – pfft!) shoes; not those walking alongside us.

Bringing home the point again was this cartoon that has appeared frequently on my SoMe feeds this week.

Copyright – SocialMediaPearls

Let us in the room. Don’t speak for us. We have voices. Hand us a microphone so we can be heard.

Entrenched

February 24, 2016 in Food, Guilt, Language, Real life | Leave a comment

OzDoc tweetchats are fertile ground for posts on this blog! Often, as soon as the chat is over, I start to write because some that was discussed has triggered a wave of ideas, or thoughts or, as was the case after last night’s chat, wanting to know more.

This week’s chat was all about food – one of my favourite topics in the world, and one that I could, quite honestly, speak and write about full time. I think about food a lot. A. Lot. I have been known to ask the question ‘What will we have for dinner?’ as we sit down to start to eat lunch. I have rushed home, desperate to turn on the oven and bake a cake and then sit in front of the oven, watching it cook.

There is a lot to love about food. But clearly, from last night’s discussion and from many discussions with others, food is not all about bowls of cherries. (I am counting down until November when cherry season is upon us again….)

Guilt and food are two words that are frequently used in the same sentence. This is not only for people with diabetes. It is entrenched in our way of thinking.

We are almost conditioned to feel guilt when we eat certain things and this in turn forces us to think that what we are eating – and could be enjoying in the moment – is a bad, bad thing.

I’ve written about how language and food get intertwined and mixed up. But what I really want to know is where the guilt comes from. Why do we feel it? How did we learn to feel that way?

I don’t ever feel guilty about what I eat. Ever. I’ve no idea why – I just don’t. (There’s plenty of other stuff I feel guilty about, so I don’t feel guilty about not feeling guilty about food!)

Is it what we hear from those around us? Cutting comments from family members, shaming comments from friends or judgemental comments from health professionals can all take their toll.

I have heard them all. I have had family members comment on what I am eating (especially when I was younger and ate like a proverbial horse). I have been asked if I should be eating that. I have had healthcare professionals judge what I eat (when I bothered to tell them).

But besides annoying me, (and visualising hitting them on the head with a spoon I have recently been using to scoop Nutella directly from the jar), I’m not bothered. No long lasting effects and certainly no feelings of guilt.

That’s not the case for everyone. And that’s what I am interested in. Why is it that in some people guilt-inducing comments are like water off a duck’s back, yet for others, result in hours of anguish, hurt, tears and stress?

I watched the response to last night’s chat with great interest. The questions were all very thought provoking and generated a lot of discussion. But not once, was the word ‘guilt’ mentioned in the questions. And yet a lot of answers did.

It seems that the two just do go together for a lot of people. I know that is the case for people without diabetes. But undeniably, it is worse for many of us who do live with it.

Flying blind

February 23, 2016 in technology | 3 comments

Some mornings are tough. The alarm goes off and I hit the snooze button, for what I know full well will not be the first time. Eventually I tumble out of bed and make my way to the bathroom, only to stand under the shower-head forgetting what it is I am meant to be doing there. And then I stand in my underwear for ages unable to make the (what in my exhausted mind is a) critical decision of what to wear for the day.

By the time I walk out of the door – late – I am flustered, disorganised and completely unready to face the day.

Now add diabetes in there and you might understand why the day started so badly.

The hypo at 2am made the 7am alarm downright cruel and jumping out of bed very difficult.

The ripping out of the sensor because I wasn’t paying attention as I was drying myself after the shower was just frustrating. And I was running too late to even contemplate putting in another.

So the result of all of that is that today, for the first time in about 3 months, I am not wearing a sensor. And I feel like I am flying blind.

Spent strips. Used since lunchtime. It’s now just before 3pm…

I have no concept of…well, anything. Melbourne is sweltering, so I am already at a loss with hypos, despite having lowered my basal rate and cautious blousing. I have been checking my BGL what feels like very ten minutes (slight – but only slight – exaggeration) to try to get some idea of what my glucose levels are doing, but the absence of alarms, alerts and arrows is making me feel very anxious. I am not sure if any feelings of light-headedness are due to needing a drink of water or impending low. And then, is the sudden thirst due to dehydration or an impending high?

I have become so reliant on my CGM and the information it gives me every second that I have no idea about the cues my body is sending out anymore.

I am not sure what to make of this. To begin with, I thought I should feel worried about the reliance that I have developed on this piece of tech. But how is dependence on a CGM any different to reliance on a BGL meter? Isn’t it just newer technology? We would never suggest someone who felt lost because they had left their BGL meter at home had an unhealthy reliance on that device, would we? We wouldn’t say that they should be expected to work out what was going on with their BGL with nothing more than stick to pee on, would we?

Perhaps it stems back to the thinking (by some) that CGM technology is a luxury, which it is not. It is a medical device that I use to manage my diabetes as best I can.

I am counting down the hours until I can get home and shove in a new sensor, wait for the two hour calibration period and then get back sense of knowing what the eff is going in. Because right now, I have no idea….

A good place

February 19, 2016 in Awareness, Diabetes, Health, Real life, Wellbeing | 3 comments

This morning as I was buzzing around getting ready for work, I suddenly stopped. I realised something that had obviously been creeping up on me so incrementally that I had not noticed it before.

I looked around the bedroom and saw empty cannula packaging from the line change I had done when I got out of the shower and the empty sensor pack with the date written on it so I would remember when it was inserted. I went back through my CGM trace and pump history, noticing where I had bolused for a high BGL, set a temp rate for an impending low and calibrated at the appropriate times. I checked the history on my BGL meter and saw that I have been checking regularly and that the numbers were not as crazy as they have been.

I looked in my bag and saw a spare bottle of strips, my fully stocked ‘emergency’ kit, and a juice box and a small container full of glucose tabs ready in case I needed them.

When I got into work, my desk was prepared for all contingencies – more glucose tabs on the desk, a couple of spare cannulas in the top draw, as well as a few syringes. And a few single portion packs of Nutella.

I was – I am – managing my diabetes – well and without any stress at the moment. The burnout fog that had enveloped me for a long, long time seems to have lifted without me even noticing, and the diabetes tasks that form part of my day and had been so, so difficult to manage, have become routine. I do them without thinking. Checking my BGL and calibrating my CGM just happens. Bolusing for meals or my morning milky coffee is done before I take that first taste rather than half an hour later because my CGM is blaring at me that I am high.

Am I feeling motivated? I’m not sure that is the right word. I don’t have a desire to do these things. I am not so focused on diabetes that I think about it all the time.

But I am doing what I need to. Routinely. Just like brushing my teeth, combing my hair and putting on a necklace in the morning.

Perhaps that’s the thing about managing diabetes well. It’s the balance between getting the things done and not panicking about them. Or feeling so anxious and guilty because they are not getting done.

I don’t know the secret to this change. I do think that a big part of it is wearing my CGM all the time. Once I managed to hurdle feeling overwhelmed by the data and just accepted the numbers for what they are and acting accordingly, I feel much more driven to ‘do diabetes’. And perhaps as I see that things are not as dire as I often imagine them to be, I feel that I can just get on with things.

This is the roller coaster of diabetes. The ebbing and flowing of motivation and being in the headspace to get things done. I’m in a good place for now. I just have to work out how to stay here.

Emergency stash at the office (for lows or as required….)

Primed

February 18, 2016 in Pumps, technology | 2 comments

This week, I find that I have been using an insulin pump for fifteen years. That is just under 5,500 days and over a third of my life. I can’t imagine my life without this technology and the thought of not having an external pancreas is a little scary.

I have spent a bit of time in the last week or so thinking about how far technology has come in the last fifteen years.

Back in February 2001 when I was admitted as an overnight patient into the Epworth Hospital in Melbourne, there really wasn’t much choice when it came to insulin pumps. In fact, there were two and two only – the Medtronic 507C and the Disetronic D-Tron. There were pros and cons to both of them – I had done a lot of research – and I decided that the smaller size of the Medtronic would suit me more, so that is what I used.

This was before the advent of ‘smart pumps’. There was no such thing as a bolus calculator and there was no capacity to even enter BGLs into the pump. It was simply a device that delivered insulin. (Kind of like old mobile phones that did nothing other than make a phone call. Ah, they were the days…Life seemed so much simpler then…)

My second pump was a Deltec Cozmo and this was my first foray into the ‘smart pump’ zone. It was a great little pump and the new bolus wizard technology was terrific. Having said that, I was always pleased that I actually knew and completely understood how to count carbs, and this was particularly important to me at first, or at least until I trusted the technology.

Today, I use a sensor-augmented pump – it’s the latest technology available and it makes my diabetes manageable, more so than any other way I know.

In fifteen years, I’ve never taken a pump holiday. I’ve never even considered it. There have been maybe a couple of times that accommodating the pump has been a pain, but I have managed it with a little lateral thinking. It’s possible that the reason I haven’t switched back to injections when it may have been easier is because I am lazy and the thought of trying to work out long-acting insulin made me weep inside.

(Speaking of long-acting insulin, I have always had some in the fridge, or with me when travelling, in case of pump malfunction. This diligence has resulted in regularly having dispose out-of-date insulin.)

So, when I started on a pump, did I think that I would still be using the same technology – albeit a little more sophisticated – fifteen years later? Probably not. There was no cure back in 2001 and there isn’t one today in 2016. Am I upset about that? Well, I guess that I would really like to not have to think about diabetes as much as I do, (or at all). But no. And not really surprised either.

I see my pump as being as much a part of me as my arm or my leg. It is a pseudo-organ. It keeps me going, it keeps me alive. I’d be lost without it. Is it perfect? No, (as evidenced by my current CGM stream that resembles a rather scary mountain range). Is it what works for me? Yes. At least for now.