Diabetogenic

Not as smart as the tech

October 23, 2015 in technology | 1 comment

I discreetly signalled to the drinks waiter making his rounds.

‘Would it be possible to have an orange juice, please?’ I asked him quietly. He nodded and returned shortly after with a tall glass.

‘You’re not fun!’ said one of the people I was speaking with at the time. ‘This is way more enjoyable.’ He held up his glass of bubbles.

‘I agree,’ I said to him. ‘And I’ll have one soon. I just need this to get my BGL up. I’m a little low.’ I was actually a lot low, but I had everything in hand, so there was not need to alarm anyone.

‘You’re hypo?’ he asked. ‘Well, what’s the use of that thing if you are hypo?’ He pointed to the CGM sticking out of my arm.

He had a point. Here we were, standing around the Mural room at Parliament House, pleading our case for the value of CGM technology in the management of diabetes.

‘Ah,’ I said to him, smiling. ‘The technology is only as smart as the user. And this user has spent the last half hour running around getting things ready for tonight and ignoring the alerts and alarms on said technology. Clearly, this user is not smart!’ I drank half the juice and gently placed the rest on a table nearby.

And there lies the problem with people’s perception of diabetes technology. It doesn’t fix things; it doesn’t cure our diabetes. It is not a ‘set and forget’ situation where we no longer need to think about our diabetes. Had I been smart, I would have stopped when I first felt the alarm. At that point, I would have changed the basal rate, or temporarily stopped the pump, or had a couple of the glucose tabs that were in my bag.

But instead, I had disregarded it, and the next alarm and the one every three or five minutes, silencing them with a quick push of a button, while in my head, I said ‘In a minute; in a minute.’

In the same way that insulin is not a cure, pumps and CGMs and smart meters are not a cure. They are devices. They make things easier or better or more in line with how we want to live our life. But they are not a cure.

Diabetes technology certainly does make me feel safer. But it is wrong to say that it manages my diabetes. It helps ME manage my diabetes, but it is still all me doing it all.

And when I am ignoring what the tech is telling me, it can’t do its job. I know that. I have known that for the almost-fifteen years I have been using a pump and the over eight that I have been using CGM. These devices are only as ‘smart’ as the user…and sometimes, I am pretty bloody dumb about diabetes!

It’s time to fund CGM

October 22, 2015 in Real life, technology | Leave a comment

I am all about facts. So when writing to the Commonwealth Health Minister, Sussan Ley, asking her to make CGM available to Australians living with type 1 diabetes choosing to use this technology, I left the emotion behind and concentrated on the realities. I can’t say that it has saved my life, because I don’t know that is the case. I do know it makes my life easier, better, happier and healthier. And that has to count for something. This is my letter about my real life with diabetes and how I choose to use CGM. I urge anyone else who believes this technology should be available more broadly to write to the Minister and share your story. My post on the Diabetes Victoria Blog from last week has some tips about what – and how – to write.

_________________________________________

Dear Minister Ley

On Tuesday, I attended an event at Parliament House about type 1 diabetes and new technologies. The aim of the night was to highlight the importance of developing pathways to ensure that new technologies make it onto the Australian market in a timely manner (in the first instance) and, once approved, are available and affordable to as many people as possible.

Unfortunately, you were unable to attend; however, I did spend some time speaking with one of your advisors and shared a little about my experience of using CGM.

This is not new technology. It has been available in Australia for the better part of the last decade. And yet, it is still out of the reach of most people living with diabetes. This needs to change.

Availing this technology to people with type 1 diabetes who want it is well overdue. Please understand, however, there will be a lot of people not interested in using CGM. But it should be a choice for everyone.

I have worn a CGM on and off for the last eight or so years. There are many reasons I don’t use it all the time. Fortunately for me, I can afford the $5,000 or so it takes each year to use CGM. The reasons I don’t use the technology continually include not feeling like I need the constant data feed, or simply not wanting to use the technology all of the time. Sometimes, I feel it won’t benefit my diabetes management.

Other times, however, I wouldn’t be without it. If my BGLs are more variable than usual (such as when I have an infection or am particularly stressed) or if I am travelling alone, having a CGM provide me with information is very important to me. It keeps me safe, it improves how confident I feel about my diabetes and it means that I stay as healthy as I possibly can.

For me, wearing a CGM is not so much about saving my life. It is about living my life the best I possibly can – despite diabetes; it is about being able to identify, react to and remedy impending high or low blood glucose levels; it is about having information that means diabetes impacts far less than it otherwise would.

Minister, we need sensible pathways that ensure diabetes technology is available equitably. But even more so, we need consistent and transparent processes that expedite the release of new and emerging diabetes technologies onto the Australian market.

I am grateful to use CGM alongside my insulin pump. I believe that it has certainly assisted me to live a healthy and productive life. It is not a luxury. It is a necessity in my arsenal of living well with type 1 diabetes – in the same way that insulin, other devices and their consumables, access to healthcare professionals, and support from my friends and family are necessary.

Minister Ley – it is time to make this technology available to any Australian child or adult with type 1 diabetes who chooses to use it.

Thank you

Renza Scibilia

Great Scott!

October 21, 2015 in Diabetes | 1 comment

I’m not really all that upset that I didn’t fly my car to work today, or jump on a hoverboard. I don’t mind that I wasn’t wearing a weird silver hat or tie my shoes using a pair of power laces. It’s okay that the clothes I put on this morning are not self- adjusting. I’m not sad that I am yet to traverse the space-time continuum in a DeLorean (or souped up Fiat 500).

This is how 2015 was imagined in ‘Back to the Future’ back in the mid eighties. The future was full of whizz-bang technology and most of it just didn’t play out as was imagined.

They got it really, really wrong. But that’s kind of okay.

What’s not okay are all the promises and predictions about diabetes being cured. Five years. Ten years. Whatever we have been told – it has all been wrong. Just as wrong as Robert Zemeckis, Doc and Marty McFly.

Visible

October 20, 2015 in Awareness, Diabetes, Real life, technology | 4 comments

‘How’s that working for you?’

‘Sorry?’

I’m at Parliament House in Canberra preparing for a type 1 diabetes and technology event being held later today. Walking through security, three security staff honed in on my upper arm.

‘Your patch, is it doing the trick?’

I was confused. ‘I’m sorry. Excuse me?’

‘Are you an ex-smoker?’

‘Oh! This? It’s not a nicotine patch. It’s a continuous glucose monitor. I have diabetes.’

I don’t know if they believed me. I gathered my bag and moved on through the security area. ‘Diabetes,’ I said again. ‘It checks my blood sugar.’

My invisible illness is pretty visible today.

I made the decision yesterday morning to site my sensor on my upper arm rather than my stomach. The last two sensors I have worn left my skin slightly irritated, so I though I would give the skin around my belly a rest. I also haven’t been thrilled with how long the sensors have lasted – the last two survived a mere 10 and 12 days which is not great when I have been known to get closer to three weeks. (I know, I know, they are meant to work for 7 days. But at over $80 a pop, I do everything in my power to make sure they last as long as bloody possible!)

Before I got to work yesterday morning, three different people had asked what the thing on my arm was. Once I got into the office, another couple of people asked (…don’t even want to remind you all that I work for a diabetes organisation…)

Waiting for a coffee at my local this morning, the barista asked about it and yesterday, at the cafe near work, I could see the people around me looking at my arm and heard them guessing what it was.

At the airport today, a security guard asked if it could be removed and then wanted to engage in a conversation about it, and the woman sitting next to me also asked about it.

It’s been very confronting.

I have never hidden my diabetes. I used to inject at the dinner table before starting pump therapy. And since using a pump, I pull it our from under my clothes to bolus, or see my CGM graph without a second thought. I check my BGL whenever and wherever I want.

But while these diabetes chores occasionally attract a comment, it is nothing like the last two days.

I found myself sitting at lunch today with my right arm cupping the transmitter and sensor to hide it from view. I’ve been cursing the beautiful weather that means I don’t need to wear long sleeves to cover the device. And I’m terrified that people think I am wearing it on my arm to attract attention.

I have always been able to see the pros and cons of having an invisible health condition. Sometimes, the fact that there are no obvious signs of diabetes means that people don’t understand how significant a role it plays in day to day life. But the flip side is that it can be neatly packed away; it can be private. I actually love that about it.

But right now, I don’t have that luxury. Right now it is out, loud and proud for all to see. And I am not comfortable with it at all.

Drop the Jargon

October 19, 2015 in Advocacy, Awareness, Health, Language | 2 comments

Drop the jargon

Tomorrow is Drop the Jargon day here in Australia. According to the campaign website, the aim of the day is … for professionals in Australian health, community services and local government to challenge themselves to use plain language.

People working in the health space are being urged to take a pledge to assist Australians who have low literacy make sense of health information and help them navigate our health system. Six out of ten people in Australia have low health literacy, so there is a real need to make sure our messages and information are presented in a way understandable to everyone.

The pledge asks people to:

Use plain language in all communication
Not use acronyms
Explain medical and other technical terminology
Check that information has been understood by your clients
Work with a professional interpreter when necessary
Politely point out when your colleagues use jargon

Diabetes is a condition rife with jargon. I’ve said before: it is like another language. I am as guilty as anyone when it comes to popping in acronyms, technical terminology and assuming everyone knows what I am talking about.

The website includes a link to a handy Plain Language Thesaurus to assist with finding simpler, clearly and less ‘jango-istic’ words when writing health information.

When considering writing in this manner, a lot of sensitivities and intricacies about different conditions are lost. For example, the thesaurus suggests replacing ‘diabetes’ with ‘elevated sugar in the blood’. (Amusingly, the same document suggests – just a page or two down – to replace ‘elevate’ with ‘raise, lift, make higher’.) Obviously, this doesn’t provide a particularly rounded definition or explanation of diabetes, and those of us who ‘get’ this space and understand the words we use when talking about it could criticise the ‘dumbing down’ of what diabetes is all about.

But think about it. If you were new to the diabetes game – just diagnosed or a family member was just diagnosed – and your health literacy was considered low, then this is probably a good starting point. It is certainly better than ‘a touch of sugar’, which are the words used by some healthcare professionals STILL when telling people what diabetes is.

I guess the dilemma for me – as someone who does a lot of writing about diabetes – is that I know that there are some people who want and need more information. Frequently, I write for people whose health literacy is of a higher standard, and there is a need to write at an appropriate level for this target group too. They want – and are able – to read technical and quite difficult jargon.

But I can never ever assume that is the case for everyone. When writing for this blog, I use language very much the way I speak – whatever comes into my head, thoughts going at a million miles an hour, lots of jargon and, if my hands weren’t flying across the keyboard, they would be flying around the air. It’s not really great for people whose health literacy is not high.

However, when writing for work, I am far more conscious of not doing those things. But I suspect, I am not conscious enough. Which is why I will be taking the pledge, and why I think this is a terrific initiative for those of us working in the health space.

My tribe

October 16, 2015 in Awareness | 5 comments

I’m feeling a little exhausted today. Fatigued. Burnt out. Drained.

People often ask me how I manage to keep diabetes in perspective. As well as living with diabetes, I work for a diabetes organisation. I am a diabetes advocate, travelling the world talking about my experiences of life with diabetes. I talk to a lot of people about their diabetes. That’s a lot of diabetes – much of it not mine.

Most of the time I manage quite well, thank you very much. I am the queen of compartmentalising and I have learnt to leave work stuff at the office. I turn away from online conversations that annoy, sadden or anger me, and I make sure that the people with diabetes I call friends – who I enjoy spending time with outside of professional settings – are people with similar attitudes to living with a chronic health condition to me.

But this week, it has been hard to turn off the noise.

Online in the diabetes space, there has been a lot of chatter. It is in segments of the DOC I generally stay away from because it is not my diabetes space. But for work purposes, I’ve needed to be in there this week. Watching, reading, and hurting. I am feeling hurt for my tribe.

Let me be very clear here, my tribe is other people with diabetes. It is not their support people or their parents or their partners or healthcare professionals. It is people – children and adults – with diabetes. And in some instances, I don’t think they – we – are being served well.

We are quick to jump in when a healthcare professional or the media is doing a disservice to people with diabetes by misrepresenting the condition. We berate them, saying they don’t know what it is like to live with diabetes so how dare they say what they are saying; that what they are doing is adding to the considerable stigma surrounding diabetes. Yet there are people living with someone with diabetes – but do not have it themselves – who are just as guilty of stigmatising those of us living with it every day.

While I acknowledge and understand the importance of those other people – it takes a village, a fucking village, to live with diabetes – it cannot be denied that the only people who really know what it is like to live with diabetes is those of us who are actually doing it. Day in. Day out. As much as a loved one says they too are living with it, they are not. Their experiences of diabetes are no less valid, no less important, no less part of the fabric of the diabetes space. But they are not the ones living with it every day.

I am not minimising the experiences of those walking alongside us. We need you; we are so grateful to have you there. But you are not walking in our shoes. In exactly the same way that I am not walking in yours, and therefore, cannot understand exactly what it is like to love someone with diabetes.

I’m tired of thinking about how some of the narrative about life with type 1 is playing out. I fear that it is painting a life lived alongside someone with diabetes as hopeless. My life is not hopeless. My family’s life is not hopeless because I have diabetes.

So this weekend, I am taking a break. My online interactions will be about other things – cookie recipes (I have some new cutters from Stockholm that need breaking in), Nutella memes and finding inappropriate e-cards to send to my sister.

Have a great weekend.

This. Because our daughter loves it.

Knock knock

October 15, 2015 in Peer support, Social media | 3 comments

‘Hey love, it’s me…Renz…I’m just out grabbing a coffee, but when I get back, I’m popping in for some insulin. I’m out…long story. See you soon.’

These are the benefits to having a dear friend who just happens to have type 1 diabetes living two doors down. And that is the message I left on her phone the other night (although, because I speak so quickly, she misheard and thought I said I was out of tomato sauce and would be coming to get some – same/same.)

Why was I out of insulin? I thought I still had two bottles. I know I still had two bottles from my last prescription. Except I didn’t, because I left them in the fridge of our AirBnB apartment in Paris. Which I had realised over the weekend and I did order some from the pharmacy. I’ve just not quite made it to the pharmacy to pick up the prescription.

Sometimes having friends with diabetes is great for the practical ‘shit-I-just-ran-out-of-stuff’ reasons. But mostly it’s because of the ‘thanks-for-getting-it-and-not-judging-me’ reasons. Not once did my darling neighbour raise an eyebrow or shake her head or tsk tsk at my disorganisation. She didn’t tell me off or ask me why I wasn’t better prepared. She just went to her fridge, pulled out a vial and said ‘Is one enough?’

My friend Alanna (read her blog, ‘cause it’s fabulous and she is fabulous and I love her!) posted this on Facebook yesterday and it really resonated.

Changing the word ‘internet’ to ‘diabetes’ makes it so true. Most of my diabetes friends live so far away. I’m lucky that I get to see some of them at diabetes conferences, or when travelling for fun, but many I actually haven’t ever met IRL. They may as well be in Narnia or the Enchanted Wood or at Hogwarts! Thank goodness for every social media platform I use to keep in touch with them!

Which is why it’s so wonderful to be able to walk two doors down, knock on the door and have someone there, with matching pump tubing hanging out of our clothes, to save the day. Thanks, Jo.

Hot topic

October 14, 2015 in Advocacy, Awareness | Leave a comment

On Monday evening, diabetes got a mention on the ABC’s Q&A program. Read all about it over at the Diabetes Victoria blog today.

After writing on Monday about the confusion I feel when I complain about the lack of CGM subsidies in Australia and my out of pocket expenses when considered against countries where insulin is out of reach of many people with diabetes, this piece is about changing the landscape here in Australia. Write a letter, make an appointment to see your local MP, tell your story.

And if, just like me, you feel conflicted about the inequality of health care around the globe, think about making a monthly donation to the Spare a Rose, Save a Child campaign, raising money for Life for a Child. I just did it now – incredibly easy to do.

Also, read about T1 International’s efforts and take part in their We Are The WORLD in World Diabetes Day campaign.

Perspective and privilege

October 12, 2015 in Advocacy, Awareness, Conferences | 4 comments

Around $80 bucks. That’s how much it costs for a CGM sensor in Australia. It’s expensive and it is completely out of reach of most people living with type 1 diabetes. There is no subsidy: you want it, you pay for it yourself.

I have been wearing a sensor on and off for the last eight or so years, as long as CGM technology has been available in Australia. In the last two and a half years, it’s been on more than off. And recently, I have found myself feeling completely lost without it.

I know how fortunate I am to be able to afford it, I really do. And yet, after I called the company to make my last order, and read out my credit card details, I heard myself complaining about the cost – to pretty much anyone who would listen.

And there, in my world, seemingly oblivious to anyone living outside it, my indignation at having to fork over well-over $300 to pay for the device that I need/isn’t a privilege/keeps me alive/keeps me out of hospital/is necessary for me to be well/helps my quality of life/reassures me/reassures my family (or whatever lame-ass reason I was sprouting) was being repeated ad nauseam.

But sometimes, this privilege is brought home in ways that make me feel shamed and ashamed.

At ISPAD + APEG last week, I attended the IDF Life for a Child update. I make sure that I go to all the sessions run by the LFAC team at any conference I go to because I want to support the program in any way I can.

Many people will have heard of the Life for a Child program. I’ve written about it before – specifically when promoting the very valuable Spare a Rose, Save a Child campaign.

17,000 children from 47 countries benefit from the program. The focus and vision of LFAC have shifted slightly in recent years. It has moved from keeping children and young adults alive to improving health outcomes and quality of life.

The education and training initiatives developed by LFAC are making sure that there is sustainable impact being made to the lives of people living with type 1 diabetes. Much of this work is done through strengthening existing centres, which means more money going towards actually helping people, rather than the establishment of new institutions.

No child should die of diabetes Each time I hear about LFAC, I walk away with a mixture of feelings – most of them associated with guilt.

I feel guilty at what I have, when so many have so little. But more so, I feel bad complaining about what I have. Feeling like a spoiled ‘but-I-want-a-pony’ kid is pretty confronting. And disgusting!

I feel inspired by the kids benefitting from the program. I hear their stories and I can’t help it but feel inspired. And then I hear Stella Young’s word in my head and know that they are not there to inspire me. They are just living. And then I don’t know what to do or how to feel. (And while Stella Young may have been referring to images of people with a disability when she coined the brilliant term ‘inspiration porn’, it works just as well when referring to these kids with diabetes.)

I don’t know how I go about acknowledging my privilege and not feeling guilty about it. I don’t know how to complain about some if the things that piss me off about diabetes without thinking ‘but it could be worse’.

I get mighty peeved when I hear people say ‘At least it’s not cancer’ because it starts to make different health conditions a competition. So is it okay to say ‘stop complaining – at least you don’t live in <insert country name> where you wouldn’t even have insulin and would be dead in a year’?

Diabetes is crap – it is a terrible condition, there is no doubting that. And I think it is fair to say that for some people, it is more difficult and it is more unfair. The things that make it harder for some are so beyond anyone’s control, which probably makes it even more difficult. But is acknowledging that enough?

Catching up

October 8, 2015 in Awareness, Conferences, technology | 1 comment

‘So, how many of you have patients who make treatment decisions based on their CGM?’

This was the question posed by one of the healthcare professionals speaking at this afternoon’s Dexcom symposium at ISPAD.

A few hands were raised. Not many; only a few in the packed room. Two of the hands that shot up the fastest belonged to a colleague and me, both of us referring to ourselves as the ‘patients’ – or perhaps each other.

We looked at each other and half smiled, shaking our heads. We knew the answer – we knew what the truth was. The response in my head was ‘Of course we do. Of course. I treat based on arrows telling me I am heading for a low without checking my BGL – I did it just before walking into the session.’

The question came after the announcement that treatment decisions could be made based on sensor readings from the new (yet to be released in Australia, but launched already in the US and in some European markets) Dexcom G5 CGM.

There has been much excitement from HCPs presenting about this new development in CGM – both at this conference and at EASD. It has huge implications because essentially, it is removing the need to do finger prick BGL checks, apart from the required twice-daily calibrations.

But it has been presented as if people using this technology have never, ever thought before to treat based on what their CGM data is displaying.

I doubt that any person using CGM has found this announcement particularly startling or surprising in any way.

But this is often the case. The release of new evidence or new guidelines or new data heralds a shift in ‘approved’ diabetes management or techniques and suddenly, there it is on all the shiny brochures and in all the shiny presentations.

And the people with diabetes who have been doing this, or have known this or understood it to be true from some time, look at each other slightly puzzled at what all the excitement is about.

I understand the importance of a strong evidence base. And I understand the need to be safe – especially as part of regulatory and approval processes. But sometimes, I can’t help but wonder why it takes so long for the evidence to catch up with what is already known, and match the anecdotal experiences that we hear and share.

It was great to have the speaker acknowledge that the show of hands after her question was probably not accurate of what was really happening.

‘You know your patients are probably doing it and just not telling you, right? They don’t want to be reprimanded for not doing what they are supposed to, but they probably are making treatment decisions based on their CGM data.’

It was probably the most frank thing we heard in that session – the twofold acknowledgement that PWD are already doing something that works but is ‘off label’, but are afraid to tell our HCPs about it, lest we get told off.

This time, when my colleague and I looked at each, we smiled widely. And we nodded. Because we knew it to be true.