You are currently browsing the monthly archive for February 2019.

Although Valentine’s Day is over and florists are back selling red roses at a reasonable price, the Spare A Rose, Save a Child campaign is still going. We run until the end of February which means that there are still ten days to go.

The tally for 2019 is already looking strong. We have hit just over $28,000, and we know there is another $8,000 or so pledged from a friend of the campaign, so we’re sitting around $36,000.

And that brings us to today’s blog post which actually begins its story back in August last year, and it goes like this…

One afternoon, I was working from home and an email came in from Scott Johnson. Scott is awesome and I adore him; and was intrigued by the subject title: ‘An idea from my dad’. Scott’s dad (who is clearly as awesome as Scott) did indeed have an idea. He thought that a great way to get people to donate to Life for a Child would be to get a smiling photo of the frowniest of them all in the DOC – The Grumpy Pumper. And I was charged with the task of convincing him to do it.

To be honest, I thought that this was not going to be an easy ask. There are literally hundreds of photos of Grumps online sporting his trademark frown. (See exhibit A) Convincing him to smile – and smile in a photo for all to see – was not probably going to be met with a lot of resistance.

Exhibit A

The conversation went like this:

Me: So Grumps, Scott’s dad thinks that you smiling in a photo should be used as an incentive to get people to donate to Life for a Child.

Grumps: Are you fucking joking? (Pause) Oh, okay. I’ll smile, but don’t get used to it.

We kind of forgot the idea, but with #SpareARose in full swing and the 2019 tally being so close to the $40k mark, we thought that now was the time to bring out this idea and see if it has legs.

Here is the deal. If our tally hits $40K by Friday night (Berlin time), Grumps is going to #SpareAFrown, and get his smile on at the MySugr event that is happening at ATTD.

This is where you come in. #SpareARose is a community initiative. It was started and is run by the diabetes online community. It is owned by us and it is a wonderful example of the community taking care of one another around the world. Grumps is a part of this community, and a part of the #SpareARose family, and he is a grumpy bastard. All good reasons to make a donation.

We’re calling on the community to step and donate to get us to $40K. If you have already donated, thank you. Is there any way you can throw in another $5? If you have been meaning to donate, but haven’t managed to do it yet, please do it now. Share the donation link with everyone you have ever met.

And share the #SpareAFrown idea, to get Grumpy to use muscles in his face that just don’t get a work out and help us get to $40,000, all of which will be donated to Life for a Child to provide insulin to children who would otherwise not be able to access it.

Let’s get Grumps to #SpareAFrown to save a child.

Click on the rose to donate.

DISLCOSURE

I am currently at the ATTD conference in Berlin. My (economy) airfare and part of my accommodation has been covered by DOCLab (I attended an advisory group meeting for DOCLab), and other nights’ accommodation has been covered by Roche Global (I will be attending the Roche Blogger MeetUp). While my travel an accommodation costs have been covered, my words remain all my own and I have not been asked by DOCLab or Roche Global) to write about my attendance at either events. 

I was up bright and early this morning, rushing around to get ready for a flight to Brisbane. ‘Happy Valentine’s Day, babe,’ I said to Aaron as I was pulling a dress over my head, brushing my teeth and checking to see what time the cab was arriving. ‘I didn’t get you anything.’ This announcement isn’t a symptom of twenty years of marriage; it’s not even because we are disorganised; and it’s not because we don’t celebrate Valentine’s Day (although, to be perfectly honest, before getting involved in #SpareARose, we really didn’t even acknowledge this Hallmark day).

These days, Valentine’s Day is a thing in our house, but purely because we’re all about spared roses and empty vases. And this year, Spare a Rose cookies.

Flowers die, children shouldn’t. It’s tragic that we even have to say that in 2019. But we do. Because there are still parts of the world where a type 1 diabetes diagnosis is a death sentence due to lack of access to insulin, and basic diabetes supplies and education.

If you can, please make a donation to #SpareARose. You money will go to Life for a Child and provide insulin to a child with diabetes. Don’t take my word for why this is important; here is Brandon telling his story and sharing how donations such as those raised as part of #SpareARose have helped him to fulfil his dreams. Happy Valentine’s Day.

 

Queen

Over the weekend, my mum and I took ourselves to see Nigella Lawson in conversation with Gary Mehigan. We were sitting in the first few rows which meant that we would have been within spitting distance of the Domestic Goddess if she were the spitting type. She is not.

Anyone who knows me would be aware that I have a massive crush on Nigella. I love everything about her and, truth be told, I want to be her, or be best friends with her. It’s tragic, but I’m owning it. I fell in love with her because of the way she talks about food with such abandon and passion. I completely understand getting excited at a farmers’ market when it’s suddenly cherry season, or when beautiful fresh asparagus spears are readily available in the supermarket at the start of spring. I get the idea of swooning at the smell and delightful crunch of the crust of a freshly-baked loaf of sourdough, and the desire to immediately slather it in slabs of salted butter.

Her recipe books on the shelf in our kitchen are well used, dog-eared and splattered with whatever ingredients a recipe calls for – the sign of a book that is frequently used and much loved. Her recipes are simple, always turn out as she promises and inevitably taste delicious. Plus, the little blurb she writes to introduce each recipe is always so eloquent and evocative that I can almost taste what I am about to create.

In recent years, I have really come to appreciate that Nigella has stuck to her guns as a food writer and cook, and not swayed into the world of wellness or pseudo-science dietetics. It would be very easy for her to have done that – she would make a killing! After all, who wouldn’t follow – and buy – everything she said if there was a promise of becoming just like Nigella?! She has remained honest to simply cooking food that is unpretentious, delicious and laden with all the things that make food taste good.

On Saturday night, Nigella’s commitment to enjoying food and seeing it as something to be celebrated was clear. She spoke about how food can trigger memories and be the thing that brings family and friends together. She told stories of family recipes and reminisced about where they came from. She spoke of her love of wooden spoons and the stories they can tell.

When asked about introducing a wide-variety of foods to kids she didn’t shame people into insisting they do anything other than do what works for them and their family. She didn’t suggest giving babies bone broth, or telling us that if our children were not eating foie gras and oysters au natural by their first birthday, we were failing them.

Someone asked an innocent enough question about what foods she likes to sneak as a midnight snack (referencing the little clip that ended as number of her TV episodes), and her response was that she doesn’t sneak anything. Food isn’t something that she believes we should feel guilty about and sneaking implies guiltily hiding away what we are doing.

Nigella knows her place is in the kitchen (because that is where she wants to be) and not in the health food aisles of the supermarket, and this is a pleasant and welcome change from the direction that so many others working in food have taken. I am so sick of celebrity cooks and chefs thinking that they are quasi-dietitians and have the right or expertise to tell us what to eat – or what not to eat.

And even more so, I am beyond over Instagram ‘influencers’ and wellness charlatans using words that make food something that sends us to hour-long confessions with the food gods.

Nigella specifically mentioned the term ‘clean food’ and why she doesn’t like it and I may have cheered along. It doesn’t surprise me that someone with as much of an affection for words as Nigella would take issue with language being used to shame the very thing she loves. I was reminded of this post I wrote back in 2014 the other day as I walked by a café near work claiming to serve ‘honest food’. I’ve been perplexed since I saw it and wondering what the hell dishonest food is.

So many people with diabetes have a fraught relationship with food. For some, it is a battle and involves hiding what they are eating, or lying about it. Having to consider and count carbs or fat can give us a distorted view of what we are eating. Our weight is scrutinised, our diets analysed. We are told to restrict certain things. Eating disorders and disordered eating are common and yet so under-researched and not understood.

So, hearing someone speak about food for what it is – a delight, something to be enjoyed, a pleasure, an excuse to spend time with loved ones, a way to nourish our bodies and souls – can put back some perspective. That’s what we got when Nigella spoke.

Before seeing her on Saturday night, I thought it wasn’t possible to love her any more that I already did. Turns out I was wrong. Because as long as she continues to celebrate food and rejoice in it, I will continue to be a groupie.

Last week, the BMJ published a piece I wrote with the Grumpy Pumper. It was part of their ‘What Your Patient is Thinking’ series which includes stories from people sharing their experiences of living with a variety of health conditions, or using health services.

We wrote about the intersection between language and diabetes-related complications and why language matters so much any time this topic is raised. This is our latest piece on the issue (read the PLAID Journal article here, and something we wrote for diaTribe here). We may appear to be one trick ponies, but it seems the appetite for this issue has not in any way diminished – which is good, because there’s lots more to come! (We’re not one trick ponies – I for one can talk for hours about why the fax machine should be made extinct in healthcare.)

It’s been fascinating – and a little overwhelming – to read the responses to the article after it was shared on a variety of social media platforms at the end of last week, and then again over the weekend. It’s also been heartbreaking when people have told stories about how HCPs have spoken about diabetes-related complications in ways that have had negative effects.

It’s refreshing to see many HCPs (including those from outside the diabetes world) sharing and commenting on the article. Much of what we have written is applicable beyond diabetes. It doesn’t matter what health condition someone is diagnosed with; everyone wants to be treated with kindness and compassion and to not be blamed or shamed.

A couple of HCPs have said that after they read the article, they will now consider changing the way the speak. I love this piece from a CDE in the US who said that she honestly thought the words she was using when discussing diabetes-related complications were reassuring until she read our perspective, and now understands that there are better ways to frame the conversation. We only hope that this will lead to PWD feeling less judged and more supported, and not afraid to talk about what is still a taboo topic for so many.

The diabetes and language landscape is broad. I know that there are many who roll their eyes and say that actually, language doesn’t matter, and perhaps we should be focusing on more pressing issues, but I wonder if they are perhaps focussing on issues that they don’t think are really important.

But there is a lot more to this issue than, for example, the debate between being called ‘a person with diabetes’ or ‘diabetic’ – or if it even matters. Regardless of what the specific issue is, we are hoping is that people understand that words really do matter; they have far-reaching consequences; they determine how people feel about their diabetes; and that the right words have the potential to make people feel better equipped to manage their diabetes as best they possibly can.

Please read the BMJ article – it is freely accessibly – and share it with your networks. If you have diabetes, take a copy to your next HCP appointment and leave it for them to read. The way that we make real, sustainable change is to keep pressing a point, and explain why it is important. Hopefully this piece has gone some way to doing that.

The illustration that was commissioned for the print version of the article. Artist Rose Lloyd did such a great job of getting across the messages in the article!

When I was diagnosed with diabetes, I was told about hypos. I was told about a whole heap of things, and hypos was just one of them. To be honest, I can’t really remember the exact way hypoglycaemia was described to me, other than it being a very matter of fact part of my overall introduction to type 1 diabetes.

There was other stuff that terrified me. If I close my eyes, I can still picture the images I was shown about diabetes-related complications. That discussion has had a long-lasting effect and I am still haunted by those photos.

But hypoglycaemia was explained as something that is likely to happen, that must be treated immediately and that there were certain things that increase the chance of it happening.

Diabetes-related complications sounded as though they had the potential to limit my life forever. Hypos on the other hand sounded just like a huge inconvenience. And an excuse to eat Nutella. (I was never advised to treat lows with Nutella. I just decided that myself.)

So with that introduction to it all, when did I start to fear hypos?

It certainly wasn’t after the first one. In fact, that was a just a little episode of curiosity. ‘Ah…so this is what that hypo thing is all about,’ I thought as I live commentated it for my poor mother.

For at least the first ten of living with diabetes, I had all my hypo symptoms. I’d woken at night time when I was low, treated and went back to sleep. Sure there were some lows that seemed to take longer to manage and to get over, but I always did so without any real issues. I worked out that there were different types of hypos with different personalities. When I was pregnant with our daughter I passed out from a hypo, and another time had a seizure in my sleep. But there was a direct line I could draw from pregnancy to low glucose level, so I just moved on.

So when did I get to the point of fear?

I don’t have any answers for this, and I can only speak of my own diagnosis experience. Hypoglycaemia was not presented to me as something that should terrify me.

Night time lows were also never presented as something scary. There were times I was advised to check overnight, but there were always reasons for that: when I started pumping, I was asked to do a 2am check for the first week. When I was pregnant I was told that if I woke up to go to the loo, it may be a good idea to check and bolus if I was high (not because there was concern about being low). When I have been playing around with basal checking, I might set an alarm to check overnight.

Where did the fear come from? I have no idea.

There are so many What if…?’questions woven into the tapestry of diabetes. With hypos, especially after a nasty one, I would spend a lot of time asking those questions. I have read posts I wrote after one of those lows and the terror is palpable, even though it’s been so long since I last actually had one. But despite the current absence of those difficult hypos, there is still a part of me that feels terrified.

Anxiety and fear about hypoglycaemia is obviously not only an issue for the person likely to experience the lows. (I wrote here about fear of lows from people with diabetes and how that can impact on us.) Perhaps that goes some of the way to fuel the fear, but it doesn’t explain where their fear comes from.

There are other aspects of diabetes that I don’t fear. I don’t fear highs even though I know they can be dangerous. I’ve had DKA and it was honestly one of the most awful experiences I’ve had. Yet I don’t fear it.

Somewhere, somehow, at some point I leant to fear lows. I moved from hypoglycaemia being an inconvenience to being something to fear. I don’t know when or how. But it happened.

Full disclosure: here I am eating Nutella to celebrate World Nutella Day earlier this week. Not because I was low.

When we find something in diabetes that works for us, we can become a little evangelical. In the past, I’ve been guilty of this.

I have really tried to tone it down; I know that just because something works for me doesn’t mean it will work for others. But even more than that, it’s none of my business how someone chooses to manage their diabetes. And none of anyone else’s how I choose to manage mine.

So, I’m revisiting this little post from last year as a reminder that we are lucky to have choices. And to not shove ours down others’ throats.

____________________________________

Pumps. Pens. Syringes.

Patch pump. Pod.

Share your data. Don’t share your data.

Blood glucose monitors. Continuous glucose monitors. Flash glucose monitors.

Low carb. High carb. Low(er) carb. No carb. ALL the carbs.

Private diabetes team. Public clinic.

#WeAreNotWaiting. #WeAreWaiting.

Apps for recording data. Scribbling down numbers on the back of an envelope. Making up numbers as you go along.

Online peer support. Face to face peer support. No peer support.

How fortunate we are to have choices – to have choices we can make for ourselves for our own brand of diabetes.

I’m feeling a little burnt out at the moment by the zealots online who think it’s their way or the highway. Do what works for you and share it, by all means. But attacking someone else for doing something different is just being a dick. Don’t be a dick. There’s really no need.

Have you noticed how the social media feeds of many folks in the DOC are starting to look a little rosy? It’s a veritable florist out there at the moment, with lots of people talking and sharing information about #SpareARose.

I’m resharing is a recycled vlog from last year where I suggested that we try to get #SpareARose outside of the DOC and into the conscience of a broader audience. Watch my over-caffeinated rantings…and then tell someone about #SpareARose and ask them to donate.

The address for donations is: www.LFACInternational.org/SpareARose

(If this is your first time here, you may be wondering what’s #SpareARose? It’s a campaign that was developed by some pretty amazing advocates from the diabetes online community back in 2013. The idea is simple: send eleven roses instead of twelve to you love this Valentine’s Day and donate the money you saved (about USD$5 / AUD$7) to #SpareARose. Your donation will go directly to Life for a Child and provide a month of life-saving insulin to a child with diabetes. Spare a rose, save a child. Sounds like a pretty special Valentine’s Day gift to me.)

I went to the endo the other day armed with questions and issues I wanted to discuss. I’d found all random notes I’d typed on my phone and sticky notes I’d stuck around my office and cobbled together a list of things to work through.

And at the end of the appointment, there was a tick against every single one of them. (Except for the one about a new travel letter. I haven’t bothered travelling with a letter for some time now because I never needed it, but the last couple of times I’ve gone through security in the international terminal in Melbourne, I’ve been given some grief about refusing to walk through the full body scanner.)

I asked about other drugs that I could take to augment my current diabetes treatment. I know that others with type 1 have added Metformin or SGLT2s to their drug cocktail and wondered if I should be considering something else.

I asked about new drugs coming, how I will use faster insulins once they finally bloody hit our PBS shores and talked about protective measures I could take to reduce the risks of every single thing that diabetes likes to throw in our direction.

I realised half way through the appointment what I was doing and it struck me all at once why I was doing it. It was about feeling in that diabetes rut – not in terms of general ‘over it burnout’, but a treatment rut. It was about me wanting more. What else can I do? What else can I take? What else should I think about? What else? What else? What else?

Loop is continuing to do doing its thing. It keeps me and my diabetes ticking along with minimal effort and generally decent lines on my CGM.

But because I am an idiot and obviously have D-FOMO, apparently, it’s not enough. I turn into Chester, that annoying little puppy in the Warner Bros ‘Chester and Spike’ cartoons, bouncing around ideas and thoughts and different drugs and treatments.

When you co-exist with diabetes, the very definition of ‘lather, rinse, repeat’, it’s easy to get complacent. And from there, it’s just a hop, skip and a jump to being in a rut. Is it any wonder that we get bored, disinterested and downright over the whole bloody thing? Or that to try to counter that boredom, we want to try anything and everything; whatever we can to keep a little bit of interest in what we are doing. We see things new and shiny and flashy and want it – not always because we feel we need it. But just because it’s something novel.

I walked out of my endo appointment without a prescription for any new drugs. We chatted about my options and when we weighed it all up, there didn’t seem to be any real benefit. But the door is open for further discussions when I see her next.

I don’t need anything new. There is nothing I can do really to be doing better. It’s just more of the same. Every day. Lather. Rinse. Repeat. (And repeat…repeat…repeat.)

I’ve been Looping for about 17 months now. I’m a fan (perhaps you may have picked that up).

The reason I am a fan has nothing to do with my A1c. In fact, right now, I couldn’t tell you what my A1c is (more about that later). I love Looping because it works for me. It takes away a shedload of my diabetes tasks. It helps me sleep better. It gives me more energy. It means I think about diabetes less. It significantly, significantly, significantly reduces the number of hypos I have, and the impact of the almost-hypos that have replaced the doozeys used to have. It means I get to wear cool t-shirts.

Badge of honour…

Because in exactly the same way as if I have tried a different eating plan it’s never been about numbers on the scale, Loop has never been about A1c.

It’s especially never about a measurement that is so flawed that it really is time to wonder why, for me and those of us who are able to access far more informative and useful data, even bother to have this checked. (Read this piece by Dr Steven Edelman from TCOYD for more on that.)

I have to say that I feel a lot of discomfort when I see A1c as such a focus. Some if it is for the reasons I’ve already stated, but also, it reinforces that we measure our success as PWD and how we are managing with this number. If my A1c went up this time, I really couldn’t care less. I’ve not long come off three weeks of holidays where diabetes barely interrupted the flow of sunshine, sea and sleep. And family, friends and food. I have not had a hypo in months. I have not had days of wanting ‘I hate diabetes’ tattooed across my forehead.

I went to my endo appointment last week still in slight January holiday mode. I completely forgot to call ahead for a pathology request – in fact, I’d forgotten all about the appointment until I was sent the text reminder a few days earlier. I used to think it was a waste of time not showing up without results waiting for me. But I wasn’t really all that concerned this time. I had some other information at hand including how much time I am spending in range. That gave me enough to focus on before I moved onto other things I wanted to talk about: the things that are really important to me with my diabetes.

Living well with diabetes is about so many factors. Those factors will be different for different people (and yes – A1c may be how some people consider living well).

As someone who has had really dark times with diabetes, it’s the light times that demonstrate how well I am doing. Those times may not be the times that I am ticking boxes that we are told gauge our success. They have certainly not been times necessarily marked with a low or in-range A1c. They are the times when the impact of diabetes is lightest. When it dances across my conscious rather than lives there. When it casts a gentle shadow rather than a thunderous cloud. A1c has never had anything to do with that.

I walk into a room of people. It’s a work meeting, and I am with a couple of colleagues. We’re greeted by about 8 others who all work for a large diabetes-related organisation. Two or three are from their Australian office, the rest have travelled from Europe. They’re here to meet with people working in the diabetes space to get an idea of the landscape in Australia.

We take our seats at a U-shaped table; we’re brought coffees. Introductions start. One of the overseas visitors tells us a bit about who he is, and rounds out his introduction by saying ‘I have type 1 diabetes. And I use Dexcom,’ he says, looking straight at me.

It’s summer in Melbourne and I am wearing a short-sleeved top. The Dex adorning the top of my left arm is clearly visible. I smile at him. ‘Snap!’ I say.

The meeting continues, with a lot of discussions and chatter. My new friend asks a lot of questions, some directed at me. I know what he is doing – it’s that thing people with diabetes who are ‘working in’ diabetes do. We try to learn how others manage living with a condition and working it too.

The meetings winds up; people start to chat with each other, continuing on from some of the discussions we’ve just had.

And the two PWD immediately turn to walk to each other. We shake hands and fall into an easy conversation. We speak about the challenge and responsibility of having diabetes while working in the space. We ask each other more questions and we listen carefully. And then we talk about our own diabetes, starting with ‘When were you diagnosed?’. I want to know how he found being diagnosed with diabetes after having already worked for a number of years for a diabetes-related organisation. We work out if we will be at any of the same meetings or conferences throughout the year.

The meeting is over. We shake hands again, and say good bye.

I walk to the elevator with my colleagues, thinking about the different ways people with diabetes connect. It happens like this. We find each other in a room. We see each other in a café. We opportunistically meet in a gelati shop. We bump into each other on the street. And we talk. We learn from each other. We gather information. We feel connected.

We get it.

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