Diabetogenic

More stripes?

July 2, 2014 in Awareness, Diabetes | 5 comments

I’ve always believed that when you’re onto a good thing, stick with it.

The other day, I was shopping with the kiddo (she is definitely my daughter – loves a good afternoon of shopping!) when I picked up a striped dress. ‘More stripes, mum?’ she said.

In my cupboard, I have no fewer than 10 striped dresses, countless striped tops and several striped skirts. There are scarves, bangles, bags, purses and even underwear with stripes. Our kitchen contains stripy cups and mugs – all the better from which to drink a morning coffee! And my phone cover is also a fabulous clash of red and hot pink stripes. Admittedly, the situation has gotten a little out of hand – I have a friend who refuses to let me buy another striped t-shirt when we are shopping together.

But I love stripes – I love the way they look and I feel good in them. I can team them with jeans for the weekend or high heels for work. Easy!

So is it a matter of ‘if it ain’t broke, don’t fix it’? Or is it more of a rut?

I’ve been feeling like I’m in a diabetes rut at the moment. The days are the same and the results pretty average, to be honest. I’m feeling unmotivated and if I’m being completely frank, I’ve been like this for almost 12 months. In fact, since I miscarried.

It’s not that I’m not ‘taking care of my diabetes’, it’s just that I’m doing as little as possible to get through the day. I have bursts of micro-managing where I step up a little and do more. I look for patterns and contemplate basal rates. I do more correction boluses and focus on post-prandial numbers. But these periods have been short lived.

My A1c hasn’t been dealt too hard a blow, and if that was how we were measuring my diabetes, then I guess no one should be complaining. But I know (and you know) it’s more than that. The average means nothing.

But for this is it a matter of if it ain’t broke don’t fix it? Is this rut a problem that I should be looking for ways to overcome, or is it enough for the moment? And what will it take for me to decide that I need to step up and do more?

One thing I recommend to people who are feeling they need some motivation, is to invest in some new tech. If it’s time for a pump upgrade, get onto it. Or call your diabetes educator and ask for a new (FREE!!) meter. I’ve always found something new tends to inject (not funny) a bit of energy into my diabetes management. Maybe that’s what I need to do.

Or, maybe I just need to accept that this is one of those times when plodding along is enough.

Or perhaps it’s as simple as getting a new purse to house my existing meter. Perhaps something with stripes…

Asked and answered

July 1, 2014 in Advocacy, Awareness, DOC | 5 comments

I am all for a clever joke. Smart puns have me smiling wryly – and feeling a little envious, generally because I’m not intelligent enough to come up with them. Clever satirists and humourists are wonderful because they make us laugh and think at the same time.

But I am not for lazy, insensitive humour that adds to the stigma of diabetes (or any health condition for that matter).

A link to this showed up in my inbox yesterday:

I’ve removed the name of the café, because, quite frankly, I don’t want to give them any publicity. I left a polite comment on their Facebook page suggesting that they help stop diabetes stigma rather than contribute to it and change the name of the (rather yummy-looking) dessert.

When I left my post, there were a few little comments suggesting that perhaps the name was a little insensitive. At that time (about mid-afternoon), there were 33 comments after the photo of the dessert – most of them saying how delicious it looked with a couple of detractors asking the name of the dessert be changed. There was nothing abusive – nothing rude at that point. I then tweeted the café, pointing to the offensive name of the dessert, and shared the photo on my Facebook page, suggesting that people leave a polite comment on the café’s page about why such behaviour is stigmatising to people with diabetes. By 9.00 last night, there were over 180 comments after the photo as well as many ratings and stand-alone comments – all negative.

Here’s the thing. The post was stupid. It wasn’t funny.

But neither were a lot of the comments that followed. Threatening legal action (Really? For what? Bad humour?) does us no favours at all. Also, I couldn’t help thinking ‘pot, meet kettle’ at several commenters who were claiming the café was stigmatising diabetes – only to then add further misinformation with a ‘type 2s cause it themselves….’ type remark. Sigh.

Yesterday was Social Media Day and this exercise was an outstanding example of just how effective social platforms can be at getting messages across. It wasn’t a great day for the café – they received a lot of negative comments on their page. But they have dealt with it correctly.

This morning, the café issued an apology and have renamed the dessert. Their apology was short, to the point and generally fair. It would have been more endearing promising to make a donation to a diabetes organisation, but it’s a start. (Even MORE endearing would be finding a way to send me one of those desserts, because, yes, I can eat that!)

The café’s Facebook page looks significantly different today. All negative comments from yesterday have been deleted, and the ratings function has been disabled. Should they have removed the negative comments and stopped allowing ratings on their page? Social media 101 would say no, but I guess that is up to them to decide.

So what do we, the diabetes community, do now? Acknowledging the apology is important here, and so is moving on. Many people have said ‘not enough’ and continued to be angry and abusive. I think it is enough. I don’t believe for a moment that naming a dessert ‘diabetes’ was done with any malice at all. It was stupid and careless. But there is no way that it was a personal attack on those of us living with diabetes. But there is definitely room for a discussion about why diabetes continues to be seen as fodder for bad jokes, and mindless behaviour like this. Until we get the language about diabetes right, this will continue to happen. Again. And again. And again. That is the discussion I’m interesting in having now.

For now, our point has been made; the café listened to our request that the name of the dessert be changed. Walk away; there’s nothing to see here any more.

UPDATE

Just after this blog was posted, I was interviewed by Fairfax Media journalist, Rose Powell. Her article appears here.

Following on from this post, which I believe is quite gracious in its treatment of the cafe, I was disappointed to see the site has been flooded with positive comments – many of them incredibly offensive to people living with diabetes. The cafe has, in my opinion, undone its good work by allowing these comments to remain on their Facebook page.

Happy Social Media Day!

June 30, 2014 in Social media | 1 comment

‘So, um, I’m going out for dinner with people I met on Twitter’. I first said those words a few years ago when I was in New York. It was a freezing cold night and I jumped on the subway to meet three women who, until that very night, I’d only ever conversed with using 140 characters or fewer. They seemed okay – their tweets were amusing – and they knew the same people I knew. On Twitter.

I remember speaking to my mum who was back home in Australia and telling her I was heading out – in the dark, to an area I’d never been, without my husband or daughter – to meet these strangers. ‘So this may be the last time I speak with you’, she said to me.

Fast forward a couple of years, and I’ve been to countless dinners, coffees, catch ups and events that have been organised with people I’ve met on social media. Now, I don’t even think about it twice. It’s how it happens! Admittedly, these ‘strangers’ are part of the same community and we usually know a lot of people in common.

Many of the people I now call friends I’ve met thanks to social media. It could have started with a retweet, a ‘like’ on Facebook or comment on a blog. But from there, my online community – other people around the globe living with diabetes has grown and grown. And my offline community has too, as online friends become IRL friends.

Today, it’s Mashable’s fifth annual Social Media Day.

For me, I’ll just be quietly thinking about how much smaller and less diverse my world was before I took those first tentative steps and entered the online world. I’m a more connected, better informed person thanks to the social media revolution.

Something new

June 27, 2014 in Awareness, Diabetes | 1 comment

This week, I had conversations with two women who were embarking on something new and feeling overwhelmed. One situation was far more welcome than the other, but I couldn’t help draw parallels between the two.

Last night, we visited dear friends and their brand new baby boy. He is the picture of perfect health – tiny and round and pink. He has cheeks made to be kissed and a head of soft hair that frames his perfect, gorgeous face.

I spoke with the new mum about the delivery and her first few days with her beautiful little boy. I could hear in her voice confusion as she related stories of being told different things by different people. Who should she listen to? Was the midwife right? Or friends with kids? What about her mum?

Earlier in the week, I had a call from a woman who had recently been diagnosed with type 1 diabetes. She was about three weeks in and confused, stressed and scared. She felt that everything she was doing was wrong and was being given different advice from, it seemed, everyone she spoke with. Who should she believe? Her doctor? Her diabetes educator? Her friend who’d lived with diabetes for the last 26 years?

I listened to both these women and heard what they were saying. I had no advice for either of them – I just listened, and nodded and acknowledged the confusion. I didn’t want to add to their uncertainty by throwing my thoughts into the ring.

But I did try to reassure both of them. I wanted them to hear that they would be okay. I know that it sounds a little Pollyanna-ish to say that, but I really meant it. I pointed out that everyone makes mistakes or tries one thing and then another and then another until they find what works for them. That’s okay. And if the thing that works is different from what everyone around them suggests, that is perfectly fine.

I tried to acknowledge that their lack of confidence is understandable, but that as each day passes, and they work out their situation, they will start to feel more secure in their choices.

The thing I’ve learnt when it comes to peer support is that often, it’s not about just sharing your story. Although that’s a big part of it, the other side is listening and reassuring. People want to know that they will be okay.

Happy Friday – enjoy your weekend. Kick it off with David Sanborn. Bang Bang! (If this doesn’t get you up and dancing and clapping your hands, nothing will.)

Meaningful engagement

June 26, 2014 in Advocacy, Social media | Leave a comment

Last year, after the Doctors 2.0 and You Summit in Paris, I spent a lovely evening with some diabetes advocates, having a dinner of steak frites. Coming along for the ride were a couple of others who had been at the conference, including Michael Seres who is a patient advocate from the UK. Michael was diagnosed with Crohn’s Disease and, in 2011, was the 11^thperson to undergo a small bowl transplant. Michael speaks regularly about his story and about the importance of patient-centred care and patient engagement.

Apart from ‘seeing’ Michael on social media, we’ve not connected again. I regularly see his name coming up as a speaker at conferences and in interviews. Yesterday, trawling the Twittersphere, I followed the link on a tweet to an article about patient representation where Michael provided some great comments.

The article ‘Walk a mile in patients’ shoes: How to become truly patient-centric’ was saying how important it is for pharma to truly engage with patients. Michael says:

“Every pharma company should have a patient representative on their board. I don’t mean someone who would come in and talk to them for a couple of hours. It should be someone who lives and breathes the disease. At that point when they’re developing new meds, they would also learn how to provide all those other services that are important to patients, but that the healthcare system cannot fund”.

He’s right! Bringing in a couple of patients for a couple of hours is tokenistic at best; patronising at worst. The discussion needs to be ongoing and all aspects of living with a health condition need to be considered when new meds (or devices) are being developed. A two-hour focus group does not really equal patient engagement – especially if you’re talking about in the development of a drug or device that is going to a part of the patients life forever more!

Focus groups for new devices often focus on the design – do you like how it looks?/is this the right colour?/would you like the screen to be this way or that? etc. But patients have far more to say than whether or not the thing looks pretty. The daily functionality of my pump or meter – how easy it is to use – is what makes me love a device or want to throw it out the window.

Had people with diabetes been engaged at the development stage of the latest smart pumps, I suggest that things such as giving an alert telling you to check your ketones EVERYTIME your BGL is above 14mmol/l would be able to be turned off. Or, at least, set to a level of the user’s choice.

Meaningful engagement with patients is a win-win for all involved. We just need to find a way for that engagement to happen as part of the ‘normal’ development process.

I am an invited speaker at the eyforpharma conference in Sydney in October of this year. Details can be found here.

Interweb jumble

June 25, 2014 in Advocacy, Awareness, Devices, Diabetes, DOC, Social media, technology | Leave a comment

One of my favourite websites is Messy Nessy Chic. This is a site full of whimsy and fun and the completely unexpected. And each week, there is a list of 13 things I found on the internet today.

This is my all-time favourite find on this site and I’m still trying to work out how to buy them both, ship them to me and spend my days driving around in them, wearing a flowery dress and scarf in my hair.

In my internet wanderings lately, I’ve found a few things. They are nowhere near as quirky or quaint. But nonetheless, I thought they were worth a share.

OVER TO YOU, MS SPARLING

Kerri Sparling needs no introduction to the diabetes blogging world. She keeps on getting better and better and better (and publishes a book!) and then goes on the telly and does this.

It’s all perfect, but for me this was the line that resonated most: ‘Patient stories are the new wave of advocacy’. Yes, they are! Thanks, Kerri.

TYPE 1 MYTH BUSTING – QLD STYLE

This isn’t really new – in fact it was launched on WDD last year. But just in case you missed it, D-QLD has this great campaign busting myths about type 1 diabetes.

IT’S NOT JUST DIABETES

The annoying things we face as people with diabetes translate to other things as well. I was sent a link to this gorgeous blog. It’s written by a mum who has a child with Autism. Her post ‘What not to say to someone who has a child with autism’ is brilliant. This is my favourite part:

If I tell you Poss is on the Spectrum, the appropriate response is not “I’m sorry”. I know it may feel like it’s the right thing to say, but chances are, if I’m telling you, it’s because you need to know – not because I’m after your sympathy. Instead maybe say “ok – what do I need to know?”.

That thing about wishing that we could legislate against stupidity? It goes far beyond people who say inconsiderate, insensitive, offensive things about diabetes.

DIABETES REVERSED IN MICE

Whatever.

PLEASE FORWARD MY BIONIC PANCREAS ASAP

But THIS! If you’ve missed it somehow (get out from the rock!) there’s been lots about the bionic pancreas all over the interwebs. I spoke about it on the radio.

And here’s a blog from someone who was on the trial.

WEARABLE DIABETES STUFF

Apple (et al) are going to make a diabetes watch! Or something. It’s exciting, although I’m not sure that it will ever really be their core business (see what I did there?). Anyway, we’ll see if Apple get there first, or if Samsung or Google pip them at the post (and there?). I don’t have in-cider information (I’m done), but hopefully, this is something that will be for real in the next few years. (Thank you! I’m here until Friday; try the chicken.)

Today’s post is dedicated to Jane, who sent me the link to About a Bugg, and recommends you try the veal rather than the chicken.

Wild weather

June 24, 2014 in Real life | 3 comments

Melbourne is experiencing some very nasty weather today. I’m writing this while sitting in my office eating my lunch and wondering if the roof is about to fly off our building. I’m also expecting the trampoline and television antenna at home to have moved neighbourhoods by the time I get home at the end of the day.

It’s often said that if you don’t like the weather in Melbourne to wait ten minutes and check outside again. It’s true – four seasons in one day is not really all that unusual. The end of a heatwave can see temperatures drop by 20 degrees (Centigrade) in a matter of minutes. Pelting rain can give way to blue skies and sunshine that will result in sunburn.

As a lifelong Melbournian, I’ve learnt to be prepared for all weather contingencies and carry an umbrella, even if my weather app predicts only a 10 per cent chance of rain. Always have an umbrella in the car. Wear layers than can be easily peeled off (or added) as the temperature jumps around. And understand that just because it is sunny this minute, don’t think it will be in half an hour’s time. Because it probably won’t be.

My diabetes contingency purse is the same. It covers a lot of possibilities and emergency situations. There are batteries for my pump, the charger for my meter, a spare cannula and cartridge for my pump, insulin, syringes (in case of pump fail, or if needed to syringe insulin into a cartridge), a five cent coin (new addition!), a spare needle and plunger to refill a cartridge if necessary, a copy of my basal rates (also saved on my iPhone).

And all of this fits into a small bright purse. From Dylan’s Candy Bar New York.

It’s an insurance policy of sorts because I know that as soon as I leave that bag at home, or fail to replace something I use, I’ll need it. I’ll have ignored the low cartridge warning on my pump and be out of insulin; I’ll catch my pump line on a door handle and rip the cannula clean from my skin; my meter will need recharging.

It’s just like those days when I’ve left my brolly drying out on the porch and forget to pack in back in the car. That’s when, in the ten minute drive from home to work, I watch the skies turn from bright, sparkling blue, to light grey to dark, to gloomy black and watch as the rain starts. And there I am in my car, cursing that I forgot the contingency plan. I should know better. Sometimes, I fear I’ll never learn.

Alert and alarmed

June 23, 2014 in Guilt, technology, Wellbeing | Leave a comment

My insulin pump, CGM and BGL meter all talk to me. (I just reread that statement and realised how weird it sounded. Thankfully – hopefully? – this is an audience that understands I’m not hearing voices and having conversations with devices.) They alarm and alert and let me know when they feel they need some attention.

And then last week, out of nowhere, my mobile phone got in on the act. I started receiving alerts at 11am each day, providing little reminders and prompts to help me live better with diabetes. At least that was what it was promising.

Somewhere, I must have signed up for this. As smart as my phone may be, it’s not likely that it signed up itself. Nor that my smart pump or smart meter made a call and hooked up with my phone. On one of the health apps or websites I use, I must have ticked the box that said ‘please send me annoying updates. At 11am. When I want to eat a doughnut. Telling me to NOT eat a doughnut. Which just makes me want a doughnut more. Now, where do I find a doughnut?’

The first day I received my 11am alert, I was a little surprised. It was a lovely, gentle ‘you’re-a-ok’ kinda message that made me feel quite loved, really.

The second day, it reminded me that breakfast was the most important meal of the day and linked to some ideas to start my day right. Disappointingly, my breakfast of nothing with a coffee chaser was not on the list.

The third day, it reminded me that checking my BGLs two hours after eating would allow me to correct any high BGL following the healthy breakfast (from the previous day’s list) I would have eaten that day.

The fourth day, it reminded me that carbohydrates are an important way to get energy, but not all carbs are created equal, and linked to a table that showed the best carbs to eat. Once again, I was disappointed. My favourite carbs (Nutella, anything containing Nutella and doughnuts. Filled with Nutella) were not on the list.

The fifth day, it reminded me that regular visits to my HCP and complications screening are important.

We ended our relationship that day. I don’t need an 11am complications screening reminder. Ever.

I found the healthy living (the diabetes healthy living) messages intrusive. Rarely at the moment I received the alert would I be thinking of diabetes. Instead, I’d be in the middle of something at work and suddenly I was torn away and reminded that a lot of my choices are not really healthy. I felt guilty. Guilty that I hadn’t eaten breakfast (except for a milky coffee), hadn’t eaten any carbs of value in the last 48 hours, hadn’t been checking post-prandial BGLs and that I was a couple of months late with my comps screening.

But more than that, it didn’t make me want to make any changes. It just added to the alerts and alarms and white noise. It was distracting and not actually achieving anything. So I stopped it. Most of the time, diabetes intrusions can’t be stopped or turned off. But this one can. The best thing to have come out of this little exercise was how I felt when I unsubscribed. I felt in control.

I like THIS white noise.

Resilience

June 20, 2014 in Awareness, Real life, Wellbeing | 1 comment

Do you ever play that game where you change one word in a song or movie title for another? One that I find fun is changing the word ‘love’ for ‘lunch’ in old jazz standards: Love Lunch for Sale; What is This Things Called Love Lunch; I’ve Got My Love Lunch to Keep Me Warm. You get the idea. (Or for another idea, check out this Harry Potter-inspired fun!)

Today, when this ‘inspirational quote; came up in in my Facebook feed, I replaced the word ‘life’ with ‘diabetes.

I think perhaps it translates quite well. I am certain that diabetes hasn’t gotten easier for me. I’m sixteen years in – still a baby, when I think of the Kellion medallists I met recently – but even though I know a hell of a lot more about diabetes today than when I was first diagnosed, it’s not easier and it’s certainly not more forgiving. In fact, each year as I tick off another diaversary, I worry more and more about complications. Hypos have become less predictable. I still second guess myself; something that I hoped I would not do as I gained the wisdom I expected would come with diabetes longevity. I’m still waiting….

As for getting stronger and more resilient, I know that definitely is true. I’ve found that I can build up my resilience stores – it helps when things are going well and I feel that I’m top of everything.

And the strength I have found to deal with some terrible situations has surprised me. At moments where I have thought that I was beaten and broken, from somewhere I have found the strength survive. And often even thrive.

I am definitely a stronger person overall because of my diabetes. Whilst diabetes has been fairly gentle to me overall, it has certainly blindsided me at times. But despite that, I’ve coped.

I think living with diabetes means we just have to be resilient – it isn’t a choice. Giving up isn’t an option when it comes to this relentless condition.

It’s Friday! Here’s the wonderful John Pizzarelli singing ‘I like Jersey Best’.

Oh what a night

June 19, 2014 in Hypo, Lows | 3 comments

I’m a little worse for wear this morning. I’d like to say it is because I was being incredibly patriotic, had set my alarm and got up to watch the Socceroos play the Netherlands. Alas, it was a perfectly timed low that saw me tweeting this just as the game was kicking off:

I thought that Jasper’s effort a few weeks ago when he woke me from a hypo was a one off thing. Not so much! Last night, he woke me twice.

The first time, I was dozing in and out of sleep when I felt something on my arm. There was Jasper, tapping me and watching me and straight away, I knew I was low. I got up and, as I often do so as not to wake the house, took my hypo and jellybeans into the front room. As I munched away, I checked to see what was going on in the Twitterverse. The latest tweet in my feed was from someone announcing the game was just starting, so I turned it the TV just in time to see the start. And then sent out a few tweets.

After I treated, because ‘treat before you tweet’.

I started watching the game, chatting on Twitter to some Aussie DOC-ers who were also up and watching. At some point, I fell asleep in front of the game. The next thing I knew, I felt Jasper’s paws again. I opened my eyes and registered that the game was 73 minutes in. I registered the score was 2-3 with the Socceroos down a goal. I then registered that I was low again.

In both cases my BGL was in the mid 3s. Jasper had woken me before the hypos turned too nasty. I think that in both cases, my BG was just getting to that level. The lows were easy to treat – both times responding quickly to the handful of jellybeans I threw down.

I’m tired this morning, but I don’t feel like I have a hypo hangover, which often follows after a particularly stubborn, persistent low. I don’t have a headache either. And I haven’t rebounded – possibly because I treated promptly and didn’t over-treat – a characteristic of many overnight hypos.

I’ve no idea what it is that is setting Jasper off. He’s 11 years old next month and it’s only in the last few months that this has happened. I don’t talk in my sleep when I am low and I don’t toss and turn any more than usual. But there is something that is alerting this gorgeous little puppy dog and he is responding by waking me.

Today, he will be rewarded with some doggy-treats. And extra hugs.

All in all, a rather uneventful, but tiring night. Pity about the final score.