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.

 

On the fourth day of #NDW, I’m considering the reach of social media and the diabetes online community.

After a friend found herself stranded overseas with a malfunctioning (i.e. dead) pump, she put out a call to her online friends for help using the communication tools of the 21st century – Twitter and Facebook. In less than 24 hours (the delay was because of bloody time zones!) and after being introduced online to many DOC folks, she has, in her hands (and attached to her body) an operating pump. Social media was the vehicle and members of the DOC from all over the world got on board to help. (Interestingly, or perhaps disappointingly, the pump company proved no help at all.)

And last night, #OzDOC celebrated its second birthday in the best way – with a party-themed tweet chat that brought people together from across the globe. It was fun and frivolous with many laughs – and ’80s song quotes. And mentions of Nutella.

Yesterday, with National Diabetes Week less than half over, I was starting to feel a little burnt out. It was getting hard to see so much diabetes everywhere (says the woman with diabetes, who writes a diabetes blog, is an active member of the DOC and works for a diabetes organisation). It was hard to stay focused on the things that help and the messages that work. It was tough seeing through the murkiness of negative messages. It was getting hard to stay on message!

But thanks to last night’s chat and knowing that my friend has a working pump again, I’m hurdling the negativity and the judgement and moving on. I’m focusing on connectedness. And so – I am sending virtual jars of Nutella to everyone at last night’s chat and to the many people who joined the dots to get my friend a pump. And just like that, I’m back on message!

 

On the third day of #NDW14, I’m trying to avoid the doom and gloom. Which is proving rather difficult, I have to say. Tweet after tweet; article after article – it’s all bad news and promises of complications. The negativity of the reporting of diabetes can get me down.

So I’m trying to equal things up a little.

During the American Diabetes Association conference last month, I saw this photo tweeted.

ADA stats photo

Look at those stats for just one minute and maybe bookmark this page and come back to it if you are feeling overwhelmed by what you’re hearing and reading. (You can read more about this research here.)

And this morning, this one from RCH foundation.

RCH tweet

And this from Professor Jane Speight and CERA.

Speight and CERA tweet

I am not saying that we need to sugar coat (no pun intended) diabetes and only talk about the good things. But the doom and gloom can be a little overwhelming. Equally, I am not here to be Pollyanna and start listing all the reason that we should be celebrating that we have diabetes.

However we can, perhaps, have a little bit of balance. By all means, get the message out that diabetes is serious – it is! But how about also making sure that some of the better news – advances in research; better management options, etc. are reported too. How about we try that for a day?

Have you seen any GOOD news stories about diabetes? As the #OzDOC crowd would say, share the #dlove!

 

Speaking of #OzDOC – 8.30pm (AEST) tonight on Twitter it’s party time! Follow @OzDiabetesOC and join the two year anniversary celebrations.

On the second day of National Diabetes Week, I’m having a smile, giggle, laugh out loud moment(s) and grimace. At these things:

Grimacing at Khloe Khardashian who says kukumbers kure diabetes. How kompletely kool!

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Giggling at this very well-played post from the Queensland branch of St John Ambulance.

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Laughing out loud at this cartoon (and pretty much everything on Bird Wing Press).

image

Smiling – really widely – at the thought of the OzDOC two year anniversary virtual party that’s taking place tomorrow night on Twitter. BYO cupcakes!

photo

Hope you’re all buckled in – the week is just beginning! Follow #NDW14 to keep up with National Diabetes Week.

What’s got your attention? 

It’s the Friday before National Diabetes Week here in Australia. Over the next 10 days, diabetes will be in the press. A lot. And that means a lot of misreporting and a lot of people saying the wrong things about diabetes.

So, here are some of my thoughts about how to address this:

  1. Stay calm. If you hear or see or read something about diabetes that is incorrect, don’t get angry. Send a balanced, calm response to the journalist, radio/TV station/person talking with CORRECT information. Be brief, use facts – dot points are good.
  2. Know your facts! And that means no perpetuating other myths to bust the one that’s pissed you off.
  3. Get over the type 1 versus type 2 thing. Seriously. Don’t bash the ‘other’ diabetes.
  4. I send the Diabetes Australia Language Position Statement out to any journalist who uses damaging language when writing about diabetes. I tweet the link directly to journos all the time!
  5. Naming and shaming is okay if you’re nice and polite about it.
  6. Don’t engage. Make your point and walk away. There is no need to enter into an argument that will most likely get heated and result in abuse. Grace and dignity are amazing qualities; demonstrate them in spades!
  7. Action! If you’re going to complain, make sure you actually do something meaningful with it. It’s all very well to bitch and moan amongst your peers, but find the source of whatever has upset you and write to them directly. (See point 1 for the tone to use.)
  8. Follow up. And if you do take the time to write, you should expect a response. If you don’t get one within a reasonable time, re-send your correspondence.
  9. Pick your battles. I can tell you now that no one has bucket loads of money to spend on diabetes campaigns, so no matter how much you want the government or diabetes organisation in your state to run a full-blown campaign explaining the difference between type 1 and type 2 diabetes, it’s not gonna happen. Accept it!
  10. Remember that you know a lot about diabetes out of pure necessity. Don’t expect that same level of knowledge from everyone. Most of the stupid things people say are out of sheer ignorance or bad manners. Politely correct and move on.
  11. There are some great resources out there that can help. Check out this and this.

The primary aim of National Diabetes Week is to raise awareness of the condition – specifically awareness about prevention of type 2 diabetes. Consider any misreporting or silly comments an opportunity to provide information and education in the hope that the people perpetuating the myths won’t do it again. And as your (and everyone’s) grandmother would say: Keep yourself nice.

It’s Friday! And it’s freezing here in Melbourne. I’m trying to imagine warm sun on bare skin, so here are The Beatles with ‘I’ll Follow the Sun’. 

 

From when I was a young whippersnapper of a girl, I kept a diary. It was very much in the ‘dear diary’ style and was full of age-relevant angst:

Dear Diary
It’s not fair! My sister is cuter than me and because she is younger gets all the attention.
Love (a 7 year old and clearly whiney – although right about her being cuter than me) Renza

Dear Diary
I hate my body. I wish I liked the way I looked.
Love (a 13 year old) Renza

Dear Diary
I really like the boy at the tram stop. Will he notice me?
Love (a 14 year old and yet to learn ‘he’s just not that into you’) Renza

Dear Diary
I’ve met a guy. I really like him. Like, REALLY. He might like me.
Love (a 20 year old) Renza

You get the picture. When I go back and read through my old diaries I laugh about the things that were taking up all my thinking time. And I sometimes feel embarrassed at the desperation I read in my words. Everything was such a drama!

But the thing I love about them is that I know that every word I wrote was honest. There was no need to sugar coat anything because the pages were for me and me alone. Really, these diaries are a candid snapshot – warts and all – of my rather boring life.

I don’t keep a diary anymore. There are times when I will sit down and write something about what’s going on, but it generally gets deleted or thrown away. Of course, I write this blog about diabetes – MY diabetes – but it’s only part of what is going on in my life. And whilst everything you read here is factual, there is a lot I don’t write about. Much of my story isn’t just mine – it involves all the people around me. Whilst I may in passing mention my family, friends or workmates, it’s not up to me to share their stories. Which is unfortunate, because believe me when I say they are far more interesting than am I (and the kiddo is hysterical!).

I am very conscious that I am not the only person reading this. And I want the three or four of you who do read Diabetogenic to like me, so I hide some of the more difficult aspects of living with diabetes. The result of this is that sometimes I give the completely false suggestion that I have it all worked out – which couldn’t be further from the truth.

It’s for this reason, that I love this Tumblr.

My Diabetes Secret is a virtual dumping ground that allows people to be honest about how they are feeling about living with diabetes. Because they can post completely anonymously, it is brutally honest. There is no need to censor the sadness or frustration or extreme anxiety that diabetes can bring.

I like to read it to remind me that I am not the only one struggling with this condition some days. The diabetes blogs I read (and the one that I write) lack a lot of the rawness evident in My Diabetes Secret. This is absolutely not because we’re trying to deceive. But putting things out there about just how much pain we are sometimes experiencing is difficult.

I love to read diabetes blogs and I love the people who write them. Our stories mirror each other frequently. They provide great comfort and they make me feel far less isolated.

But some days, I need to know that there are others feeling the extreme anger, anxiety and hate that I am about this condition. Whilst I don’t necessarily want to share details of it here – of those deep, dark fears that keep me company when I can’t sleep – it is incredibly reassuring to know that others feel the same way.

You can also follow My Diabetes Secret on Facebook here and on Twitter here.

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