So much going on. So much to do. So much to plan. So many presentations to write.

So….naturally, I’m surfing!

BIONIC
I’m still really excited about the Bionic Pancreas. I know that when we hear of new research it’s often about mice, labs, five years’ time etc. So hearing and reading about the ‘real-life’ applications of this technology has been so very exciting. And hopeful. I interviewed someone who participated in the Melbourne trials (you can read about it in the next edition of Conquest). And for another beautiful, goose bump-inducing read about it, here’s what Kerri wrote at Six Until Me.

BLUE CIRLCE APP
A couple of months ago, the IDF launched a new photo app to help raise awareness of diabetes.  You can add a blue circle to any photo and then share on social media. Here’s my latest masterpiece:

Blue Circle APP

ZOE BOWIE SINGS
Earlier this year, I sat on a Google Hangout panel with Jamie Tripp Utitis who recently presented at the Doctors 2.0 and You conference in Paris about her beautiful new book ‘Zoe Bowie Sings, Despite All Sad Things. Jamie wrote this book for kids with a parent with MS. Jamie writes an awesome blog of her life with MS. You can read it here.

WHERE ARE THE PEOPLE?
I threw a huge tantrum let out a huge sigh of defeat when this appeared in my (virtual and real) inbox today. It’s the promotion of a conference in Melbourne later this year about the future of primary care. One of  the focuses is patient outcomes. Looking through the myriad speakers what do I find? Not. A. Single. Patient. In. Sight.

SCRIBBLES
Mike Lawson (who I was lucky enough to meet briefly at year’s ADA conference) recently started ‘Scribbling My Life Away’, a blog of his drawings. It’s not really, diabetes-related (although there is the occasional diabetes reference) but nonetheless very cool. (And, Mike, if you’re reading this, can you please do me a scribble of a jar of Nutella and a big spoon. I’d like to put it up in my office?)

SWEET PRETTY THINGS
Totally, completely and utterly not diabetes-related, but I can’t stop looking at the gorgeous artwork of Aussie Illustrator Kerri Hess. I am trying to work out how I could commission a life-size piece that would fit perfectly on a big blank wall in our bedroom.

MEOW
In other news, a cat café opened in Melbourne this week.

CRAZY BIKE RIDING TYPE 1 PEOPLE HEADING TO VIENNA
Last year a group of mad folk with type 1 diabetes  rode from Brussels to Barcelona as part of the mHealth Grand Tour. Not content with this achievement, the group known as Team BG, will be doing it all again, kicking off in Barcelona and heading to the location of this year’s EASD conference, Vienna, where I intend to greet them and call them all crazy. I might then buy them a beer.

HAVE YOU REGISTERED YET?
A reminder that TODAY IS THE LAST DAY to get the early bird rate to attend the first ever ADS-ADEA Consumer Outreach program. Book now!

 

How often do you think about diabetes in a day? In an hour?

On those days that I think of diabetes about once an hour (when awake), I know that I’m doing okay. That may seem a lot, but it could be because I’m checking my BGL, bolusing for something I’m eating, doing a line change, thinking about eating something, making something to eat, about to drink a coffee with added sugar.  It could be when I am getting dressed in the morning and remembering to reconnect my pump or pulling my pump out from my bra to check my CGM.

Sometimes they are passive thoughts, other times deliberate and actioned.

When this is my activity level, I know that I’m tracking okay.

But when I go for a few (say 4 or 5) hours or even a whole day without thinking about diabetes, I know I’m not tracking quite so well. On those days, I don’t check my BGLs, I don’t check what my CGM is telling me (maybe because I’ve not got a sensor in, maybe because I just can’t be bothered), I may not be eating particularly well or at all, so don’t bother bolusing. Sure, I passively thought about diabetes when I stepped out of the shower that morning and reconnected my pump, and perhaps I blind bolused for the sushi roll that made up lunch, but that could be my entire day of diabetes ‘chores’.

And equally, if I’m thinking about it more than once an hour, I know that something is not quite right. It could be that I’m high and trying to manage that by checking my BGL every 10 minutes hoping for a drop – even a teeny tiny drop – in numbers. At the same time, I’m anxiously trying to walk the tightrope that is enough insulin to bring me down from the hyper ledge, but not rage bolus and send me crashing. I’ll probably be starving, so I’ll be thinking about food and calculating carbs and making deals with myself as to what my BGL has to get to before I can eat.

Or, I could be low and trying to deal with the pounding heart rate that is a doof-doof reminder of my hypo-state. Probably over-eating, I’ll be checking my BGL every five minutes, looking for an upward trend in my numbers.

Either way – high or low – I’ll be thinking food, numbers, hoping for balance, worrying about over-treating, over-medicating.

It’s such a fine line.

Too much…

Too little…

Just right.

This post was first published in 2011. Sometimes, I think that there is progress being made when it comes to consulting people with diabetes in the development of programs, services and resources for us. Other times, I’m not so sure. Some groups and organisations are incredibly tuned in to people with diabetes (I’m talking about you, Australian Centre for Behavioural Research in Diabetes) and I cannot express enough my gratitude for the high regard of the ideas and thoughts of people with diabetes this group regularly demonstrates.

I stand by what I have written in this post: We are the experts in living with diabetes and we want to work with those who are working to help us. Please, please let us. 

——————————

There seem to be a lot of people who like to be the voice of people living with diabetes. Strangely enough, a lot of the time, these voices don’t actually have diabetes themselves.

As far as I am concerned, every single person out there who wants to advocate and support people living with diabetes is terrific. Continue doing it! But make sure that if you are speaking for us you have first heard what we want to say.

Any time an advisory panel or steering committee looking at anything to do with people living with diabetes is formed, the first people invited should be consumers. How can other people possibly advise or steer for us unless they hear what we need and what we want?

If government wants to improve our lot, ask us how to do it.

Experts in diabetes are not the people who care for us. I know how blunt and arrogant that sounds, but it’s true. I have a brilliant team of health professionals around me – I have written of this on several occasions; hell, I even named my daughter after one of them. But these outstanding, talented, exceptionally smart people do not speak for people with diabetes.

I struggle regularly with the way that we are not considered in the planning and development of new resources, activities, devices and technology designed to ‘help us’. When we pipe up and say ‘hey we’re here’, we often get told that we’ll be consulted ‘later’ – often too late when changes cannot, or will not, be made. That sort of consultation is, I’m afraid, tokenistic. It doesn’t count for anything and those doing this shouldn’t get to then say that they did work with the community.

The experts when it comes to making lives better for people with diabetes are us. The people with diabetes. We’re the ones who live with it, love with it, scream at it and want to turn our backs on it in disgust. We’re the ones who agonise, cry, laugh and celebrate it.

Don’t speak for us. Don’t assume. It should always be nothing about me without me. Always. Listen to us. Ask us. Take cues from what we say. Believe me, we’ll tell you what we need.

Am I being too harsh with this? I wonder what others with diabetes have to say and if they feel the same way.

A few years ago, when the Diabetes Australia Language Position Statement was released, I wrote a post about why words used to describe people matter. At the time, I asked people around me to pick a noun or two that they would use to describe me. The polite suggestions made it on the list which looked like this:

Slide 1

These terms are all still correct. Actually, that’s not true. I’d probably replace ‘Twitter novice’ with ‘Twitter enthusiast’, but the rest are all true. Although, having said that, there have been (brief) periods in the intervening years where things have changed a little. I point specifically to the short-lived-but-still-boasted-about walking period. But that’s over now, so what-the-hey! What you see up there still describes me perfectly.

Many of these words are consistent with what I use for my author profile when I write for another site, or speaker bios when I present at conferences. When I have three or four short sentences, I want to convey the things that are the most important in my life – the focus.

Generally, all bios start with the same thing: ‘diabetes consumer advocate’. This is the bit that is particularly relevant to my work and what it is that I am writing or presenting about. But then there are other things that try to give a fuller representation of who I am. My Twitter profile has ‘wearer of stripes’. A recent bio noted my love of New York. Another pointed to my boot collection. In this blog’s bio, the pets get a mention.

And there, along with explaining where I live and with whom, you will find out that I have diabetes, but this is simply wrapped up in the other things that make me part of who I am.

Why is all this important? Because the things that make me who I am shape my thoughts and experiences of living with diabetes. The inner-city dwelling bit is important because when I write about ‘interviewing health care professionals’ it makes sense. I wouldn’t have this privilege if I was living in a remote area serviced by a single GP.

The scarf collector comment above along with the mentions of striped clothing and boots help explain the sartorial importance of diabetes paraphernalia. (Or I could just be shallow – you decide!)

And if I am talking at a conference about how I use social media for peer support, you can understand my love (and use) of Twitter or Facebook as a means of connecting with people.

Telling you that I am a mum to a gorgeous nine year old goes towards explaining the anxiety I feel when thinking of the genetics of type 1 diabetes. And when I write about how worried I am about how diabetes impacts on those around me, you can appreciate why I’d feel that way because I’ve briefly mentioned my immediate and extended family.

Even if we say – and truly want to believe – that diabetes doesn’t shape us, the truth of the matter is – it does. Of course it does. How can a condition that is so present, sends out reminders constantly, requires so much time and attention not feature in who we are? If it were not for diabetes, my life would be significantly different today.

I’ve no idea what I would be doing had my beta cells not taken early retirement, but I doubt it would involve being an advocate for a condition about which I know nothing (which is precisely how much I knew about diabetes before my diagnosis). But here’s the thing. All of those other things – the family, the love of travel, the addiction to coffee, the preoccupation with words and punctuation, being drawn to stripy clothes and loving cupcakes – those things would still be the same. All of them. It’s the diabetes that would be different. It just wouldn’t be there.

 

Yesterday afternoon, I made a mercy dash to the florist because I felt an overwhelming need to have some white flowers in the house. On our kitchen table, we now how a huge bunch of early cheer sending out the sweet fragrance of the promise of Spring, and in our bedroom is a bunch of pretty, delicate white roses.

Flowers and anniversaries go together, hand in hand – sometimes as a celebration. Other times to commemorate.

The last couple of weeks have been quite difficult for me as it’s the anniversary of my miscarriage. Twelve months ago today was the final in a series of operations I needed – I guess it represents the ‘closure’ of the pregnancy. The actual date of the miscarriage was two weekends ago, and it was a tough day for me. And today is also a difficult one.

Anniversaries – the good and the bad – are important to me and I like to mark them all in some way. Not everyone feels this way, but for me celebrations such as birthdays, wedding anniversaries, diaversaries, are significant and definitely should be recognised. This doesn’t necessary mean with grand gestures, but at least an acknowledgement. I also believe in commemorating the sad occasions.

Perhaps fortunately, it has been a very busy time at work, so I’ve not really been able to think too much about this particular anniversary. But in quiet moments, when I’ve been alone with my thoughts, the memory of what we lost and what could have been has occupied my mind.

This weekend I’m planning to take things a little easy. The flowers in our home will be a reminder not only of what happened, but also how far I’ve come in the last twelve months. Gently, gently, moving forward.

Apparently there is more to write about than diabetes. (The photo is blurred, but the book’s title is 642 Things to Write About.)

Things to write

 

After a busy #dblogcheck day, I’m not sure I believe that….

Totally irrelevant, but this was taken on a cold Friday night in Readings, Carlton at an in-store performance by local guitarists Paul Carey and Julian Scheffer. Check them out here, just jamming in the kitchen….As you do.

Today is #dblogcheck day. The idea is to ‘check in’ by commenting on any diabetes blogs you read today. The hope is that by commenting, you’ll be reminding people that they are not alone. I love this idea! Thanks to Christopher Snider (@iam_spartacus). Look for the #dblogcheck tag to find some #dblogs to read. You may find a new favourite!

I make dozens of diabetes choices every day. From what I will eat, to the dose of insulin I take, to how many times I’ll check my BGLs, these are all choices that I make. Sometimes they are made with careful consideration. Other times, I barely give them a second thought.

But regardless, I stand by these decisions and their consequences – good or bad. Generally, the outcomes impact me and me alone: too little insulin, a BGL of 20mmol/l means I guzzle water, rage bolus and feel like crap until I get back in range; too much insulin, a low that is usually managed with a juice or a handful of jelly beans. Most of time, I manage to ‘fix the damage’ and move on without involvement of anyone else.

But sometimes, that’s not how it pans out.

One of the burdens of diabetes is how it affects those around us. On the rare occasions I need assistance I experience incredible guilt afterwards. I know I shouldn’t, and I’m never made to feel guilty, but it is how I feel.

I have never heard anyone in my family complain or even comment on their role in my diabetes. I know that doesn’t mean that they don’t get pissed off by my AWOL beta cells (being woken up in the middle of the night and then having to get up to grab me a juice or put on some toast is, whilst a rare occurrence, certainly not fun for my husband), but I never hear complaining.

To date, my daughter’s involvement has been minimal. There have been a handful of times, perhaps, when I have asked her to grab me my lolly jar. For her, I suspect the biggest inconvenience is having to explain to her friends why said lolly jar is out of bounds for their grabby (grubby?) fingers, and the times where we’ve had to briefly postpone whatever we’re about to do as I wait for my BGLs to come up to a safer level.

Last year, when a friend needed to call an ambulance after a particularly nasty hypo, I worried for a long time (I still do!) about how she would feel about my diabetes. For a while, it felt that she was watching me very closely every time we went out to make sure that I wasn’t going to collapse on her again.

I can’t imagine how scary it would have been to have me suddenly pass out. She did such a sterling job of managing this situation (right down to warning the paramedic that I was going to be seriously annoyed when I ‘came to’ and start asking a million questions), and I couldn’t have asked for a more sensible or thoughtful person to have around for this. But still – I worry that it was a choice I made (or didn’t) that resulted in her having to take an active role in dealing with my diabetes. She didn’t sign up for that when she and I became friends back when we were teenagers.

While I try to make choices that yield results that impact me and me alone, I think a lot about how others feel about my diabetes. What I want those around me to know is that I’m sorry when they have to get involved. But also, I’m so grateful.

I haven’t quit sugar and I’ve no intention of doing so because Nutella, doughnuts and the red velvet Tim Tams* that Adriano Zumbo has just developed with Arnott’s. Also, candied bacon.

So looking at the I Quit Sugar Facebook page the other day was a pointless exercise that was only ever going to end in stress eating (of foods mentioned above). And the development of a twitch in my right eye.

The I Quit Sugar (IQS) Facebook admins had caught on that last week was National Diabetes Week and were outraged – OUTRAGED – to discover that on some diabetes sites were recipes containing sugar. Because, you know, sugar causes diabetes. Right?

Wrong!

But let’s not allow facts, a broad evidence-base, and the medical fraternity to get in the way of a good bit of ignorance, will we?

I know; I should have walked away. Shoulda, coulda, woulda. Instead, I read. And read and read and read post after post after post of ignorance and judgement and lies.

Whilst for the most part I sat there shaking my head at the witlessness of the posts, it was when people started outright lying that I decided that I had to write something.  One woman claimed that the Australian Paediatric Endocrine Group (APEG) is run by ‘pharmacy companies that make insulin’. She went on to say that JDRF is ‘owned and run by pharmacy companies with an interest in insulin’.

Both these statements are complete lies. The APEG Council is made up of very highly regarded healthcare professionals. The current President of APEG is Professor Fergus Cameron who is the head of Diabetes Services at the Royal Children’s Hospital in Melbourne.

JDRF is a global not-for-profit, raising much-needed funds which go towards research that is looking to find a cure for, and improve management of type 1 diabetes. Run by pharmacy companies? I don’t think so.

The conspiracy theorists on the IQS bandwagon remind me of the anti-vax brigade. The ridiculous claims that the entire medical establishment is simply trying to keep people unwell and feed the pockets of Big Pharma is offensive. The only difference between the two is that the anti-vaxxers are stupid and dangerous. The IQS zealots are just plain stupid.

But here’s the other thing that I find so offensive about so many of the posts from proponents of IQS – the judgement. One woman (in a comment that has now been removed) said she’d like to ‘slap diabetics who eat sugar’.

Quitting sugar is a personal choice – a lifestyle choice, if you will. In exactly the same way that doing yoga, going for a run, not eating red meat or only wearing stripes is a personal choice. These things may work for you, which is terrific, but judging someone because they still want to eat sugar – or wear polka dots – is crazy.

The foolish conspiracies on the IQS website say the advice provided by the medical establishment and health organisations should be questioned and ignored.

But, as I posted in my comment on their FB page, whose integrity should we really be questioning here? Researchers and healthcare professionals with years of training in their specialised field? Organisations supporting people, and raising money to help researchers further developments in living well with these conditions? Or money-making endeavours based on pseudo-science with no evidence-base run by a celebrity?

 DISCLAIMERS

*I am so not sponsored by Arnott’s, but seriously – these are amazing! And perfect for an intended week of eating only red food to coincide with a new-found addiction to True Blood!

Professor Fergus Cameron is a member of the Medical Advisory Committee of the Diabetes Camps Victoria Program at Diabetes Australia – Vic. I am employed by DA-Vic and the chair of this committee.

On the sixth day of #NDW14, I’m looking beyond our shores and remembering that we really are lucky here when it comes to accessing diabetes supplies.

Last night, I attended a special screening of Sweet 16, a movie about a young Canadian woman with type 1 diabetes. The documentary film tells the story of Katia Shannon, who shares her story of life with diabetes.

Featured in the film is Insulin for Life, a not-for-profit organisation founded (and based) here in Australia. There are affiliates all over the world. I’ve known about Insulin for Life (IFL) for a long time and have been aware of the incredibly important work undertaken by this organisation. The objectives of IFL include obtaining diabetes supplies (insulin, syringes, BGL meters and strips) and then donating and distributing them to diabetes associations in countries in need. They also look at developing and implementing sustainable improvements in accessing diabetes supplies in countries in need.

The film last night highlighted a kids’ camp program in Ecuador. The average monthly income for many families in this South American country is $250 and a month’s supply of insulin is $200. Do the maths and think about that for a minute. You can see how dire this situation is for many families. Without IFL, many people in Ecuador would not be able to access insulin to treat their type 1 diabetes. This is just one country supported by IFL.

Today, with National Diabetes Week drawing to a close, have a look at the Insulin for Life website and see some of the amazing and much-needed work they are doing. Supporting them is good karma.

It’s Friday after a very long week, but’s not over yet? So, to keep up our energy, here’s some Georgie Fame to get you (go-go) dancing. Yeh Yeh!

On the fifth day of #NDW I’m shouting #SHOWMEYOURPUMP. Well, maybe not shouting it out to random people – that would be weird – but I’m certainly getting very excited about it.

Last week, the interwebs were on fire with a photo of Bethany Townsend who lives with Crohn’s Disease. Whilst on holiday, she posed in a bikini with her colostomy bags clearly visible. In a campaign of solidarity and Crohn’s awareness, other people with the condition started posting photos online showing their colostomy bags, which are usually hidden away.

Not to be outdone (not that it’s a competition) the diabetes world has our own advocacy queen this week with the newly-crowned Miss Idaho, Sierra Anne Sandison who stood on stage this weekend in a bikini with her insulin pump clipped to her bikini bottoms. Just like that!

And with it came a call for people with diabetes to be just as out and proud by posting photos of themselves with their pump, using the tag #ShowMeYourPump

By last night, the photo of Sierra and her pump had been retweeted nearly 2,000 times and there were hopes that the #ShowMeYourPump tag would trend on Twitter. Today, both my Facebook and Twitter feeds are full of pictures with the tag.

This is an easy, fun and far-reaching advocacy and awareness campaign that (once again) shows how social media can be used for good.

So, for a bit of fun, take a photo of you and your pump. There’s no need to pop on a bikini to do it, but knock yourself out if you want to. For my money, it’s Melbourne black – and far too cold for bikini craziness!

 

Showing our pumps in the office today. #ShowMeYourPump

Showing our pumps in the office today. #ShowMeYourPump

 

Sara from Moments of Wonderful has left a comment below reminding me of this great awareness campaign from a couple of years ago. Pumps and glasses! I thought I’d share it here too.

 

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