real life with diabetes
*It’s Thursday in Australia, but Wednesday where we are.
We got here. Thirty-two hours, four plane legs (thanks to an unexpected stop in Tampa due to thunderstorms closing Orlando airport), a kid who vomited her way through pretty much all thirty-two hours of the four plane legs, and hour and hours of low blood sugar somewhere over the ocean.
And now on my wrist is a bright green band. I’ve reconnected with friends I’ve known for years here and made new ones. And there are strangers by the pool with matching green bands and matching pumps hanging from their bathers.
My family are getting to know the Friends for Life family, being welcomed as warmly as I was when I first met everyone.
‘They look like diabetes people,’ said Aaron as we were walking around the lake the other evening.
‘How do you know?’ I asked him, wondering if he had developed a diabetes-detecting superpower.
‘She has a pump attached to her pocket,’ he said, nonchalantly.
And she was. I hadn’t even noticed.
It’s going to be a big, big week!
Follow ow along at home:
The Diabetes Hands Foundation MasterLab Summit – “A More Effective Summit’ is using #MasterLab and Friends for Life is at #CWDFFL15
Putting together a presentation a couple of weeks ago, I came across this and was so excited I actually squealed:
(Click image for source)
File it away under #RenzaIsAGeekGirl (#AndProudOfIt)
Have a great weekend! My family and I are travelling to Orlando for Friends for Life on Sunday. I’ll be popping in now and then next week.
Here is a little bit of Tom Lehrer. Please indulge me! (And for Harry Potter fans, here you go.)
Last night, I had a dream that someone was speaking with me about diabetes and I was unable to understand them.
‘I’m sorry. I don’t know what that word is. Can you use it again in a sentence? How do you spell it?’
‘D-I-A-B-E-T-E-S. You DO know what it means. I’ve heard you talk about it before. You write about it.’
‘Do I? I’ve never heard of it. Tell me about it. What to I write about it?’
The person in my dream kept insisting that I knew all about it and that I actually worked in the diabetes field.
‘Don’t be ridiculous. I’m not a doctor.’ I said to them, laughing.
‘No. Not a doctor. You are a person with diabetes who works with others with diabetes. It’s a peer thing.’
As I got more confused and the person insisting that I was some sort of ‘diabetes person’ became increasingly frustrated with me, I woke up.
In that delirious, delicious moment between dreaming and being awake (it’s called hypnopompia which is such a beautiful, evocative word) diabetes ceased to exist.
Diabetes ceased to exist.
It only lasted a few seconds, but it happened. And it happens most mornings. Unless I am jolted awake because I’m low, or with a sudden urge to pee because I am high, there is a moment – a sweet, brief, perfect moment – every day where diabetes ceases to exist.
And, my friends, it is my favourite time of the day.
Yesterday was Social Media Day. Actually, it’s still going in the northern hemisphere.
And here is an example of how to be a dick on social media:
Now, after being a dick on social media, here is what you should do. (It’s actually quite easy.)
Instead here is how you keep being a dick:
(The Nick Jonas reference was in response to this tweet.)
Seriously CrossFit, shut up!
Also, if you want to insult all people with diabetes, how about trying something original? This has been done to death. Jamie Oliver did it earlier this year; Aussie comedian Dave Hughes did it a few years ago. And a pathetic little café in Sydney did something similar exactly 12 months ago today. It’s old…really old.
Making fun of health conditions is not clever. It shows ignorance and it is just plain nasty. How about you show some kindness and talk about how your program can actually help people living with (all types) of diabetes? Wouldn’t that be inclusive rather than divisive? Novel, I know.
Last word goes to the Diabetes Hero Squad (who makes me laugh daily!) with this.
One afternoon whilst in Boston, I left the confines of the Convention Centre so I could attend a DOC event. It was hosted by J&J and the event started with a two hour walking tour of Boston. This was a brilliant idea on so many levels, not least because it meant that I would actually get to see some of beautiful Boston and hear about its rich history.
Water taxi to work.
Boston is really a stunning city. Between the glimmering harbour, stunning architecture and cobble-lined streets, it’s a very pretty city to walk around. (Because, believe me, you don’t want to drive around it. The traffic is bloody horrendous!)
Our walking tour followed part of the Freedom Trail (read about that here). We made four of the sixteen stops on the walk. (Which only means that I now need to return to Boston at some point and do the whole trail!)
Some of the sights on our walking tour of Boston.
So, what do you really hate about your diabetes? was one of the questions. Not necessarily an easy question, but one that I jumped in to answer first. Because actually, for me, it has an easy answer. As much as I write about the crappy hypos, and difficult days with BGL swings resembling some sort of Himalayan mountain range, and the emotional side of diabetes, the thing I hate most about diabetes is never really far from the front of my mind.
I hate that it’s not just MY diabetes. I wish it were. But it’s not. I hate that it is also my family’s and friends’ diabetes. I hate that they know about diabetes and that they have to sometimes be a part of it – taking an active role in helping me. They don’t get a choice. And while they would never say this – and they probably don’t even feel it – I feel like I am a burden. I hate that my diabetes is also my husband’s and daughter’s and mum’s and dad’s and sister’s and in-laws’ and friends’.
I stopped speaking. Some of the others in our group were nodding. I can talk about diabetes a lot without getting too emotional. I can be pragmatic and direct. These are the facts – this is what it’s like. But when I talk about my family, I do get emotional.
I felt my eyes starting to sting and was glad that I had a pair of glasses hiding my tears. Not that it would have mattered had I openly cried. As I said, I was amongst friends and the only response would have been a huge hug. Possibly from this bloke:
The wonderful Scott Johnson.
Discussions about diabetes can be tough. But when you have kind, generous and understanding people around when having these discussions, it makes things just a little easier.
Thanks to the team at J&J who put on the walking tour and drinks afterwards for members of the DOC.
I am almost over my jet lag. I know: I’ve been back for two weeks now and I am still dealing with the effects of a messed up body clock. I expect that by next weekend, it will all be good and I’ll be fine again.
Which is terrific. Because next Sunday, I’ll be getting on another long haul flight and going back to the U.S. so I can go to Friends for Life (FFL).
I can’t tell you how excited I am about this. (The going to FFL part; not the long haul flight/more jet lag/perpetually messed up body clock part.)
I‘m more than thrilled to be given the opportunity to attend FFL. I have spoken to so many people who have gone and I get the same words from everyone: ‘It’s life-changing’, they all say. I have met Jeff Hitchcock from Children with Diabetes (who runs FFL) a number of times, and each time, I inevitably say ‘Jeff – how do we get this to Australia?’ Part of the reason I’m going next week is to see how indeed we could make that happen!
Because here in the wonderful land of Oz, we don’t have anything like FFL. Of course, we have camps for kids with diabetes and, in some states, family camps. In fact, just this weekend (and next weekend too), Diabetes Victoria will be hosting our annual family camps for kids with diabetes and one of their parents.
The difference with FFL is that is for the whole family – everyone! And it’s not just for kids with diabetes. Panreatically-challenged adults can go and take their family along too (including my little clan, which is making me explode with excitement!). This means that at FFL, everyone is considered – siblings, parents, partners, kids of parents with diabetes, even grandparents!
This completely subscribes to the It takes a Village idea. And the longer I live with diabetes, the more people I speak with who are affected by diabetes, the more I realise this is a truism like no other.
I am so happy that my family is coming along too. When it was decided that I should attend this year’s FFL, I knew there was no way that I could go without them. I was crazy if I thought the kidlet (and Aaron!) would ever forgive me for going to Disney World alone – even if it was for work.
So, I’m looking forward to joining the Friends for Life village next week, and adding my little tribe to it. It will even be worth the jet lag that will, undoubtedly ensue!
Standing at the counter of my usual morning coffee shop, I was flustered. I placed my order and stepped out of the way, juggling my phone, glasses, loose change and handbag. I’d been ignoring my vibrating pump since I’d walked into the café – I knew that it was telling me that my BGL was heading south. I knew that. I had it in control. I knew I wasn’t low yet – just headed that way. I knew I was still more than safe and there was no need to panic.
But my pump doesn’t understand the subtleties of diabetes. It works in absolutes and it was absolutely telling me that my BGL was dropping and dropping too quickly.
And then, because it thought that I was ignoring it or hadn’t realised it was trying to tell me something (it sits hard up against my sternum, held in place by the tight elastic of my bra – how could I not know?!) it started wailing. Well, maybe not wailing, but that is what it sounded like to me.
In a move completely devoid of any classiness or poise, I dumped everything in my hands on a nearby communal table, giving an apologetic –and grateful –glance to the office worker who managed to catch my phone before it crashed to the ground.
Continuing with the grace and polish I was exuding, I roughly reached down my top, pulled my pump out and silenced the wailing with a firm press of the ’ok’ button before, equally elegantly, depositing it back in my bra, tubing still poking out.
I took a breath, gathered my things and shoved them into my bag and turned to continue waiting for my coffee, the alarm now silenced. And caught the eye of a man who had just been handed his coffee.
Almost imperceptibly, he nodded at me; his head inclined downwards only a tiny bit. I must have looked puzzled. He placed his coffee down – also at the communal table I had just used as my dumping ground, and reached into his pocket where he pulled out the same pump as mine. He waved it at me, picked up his coffee and walked out.
‘Renza? Your coffee is ready, hon.’ The barista was calling my name. I thanked him and grabbed my coffee, walking into the cool morning air outside. I looked around for the man with the pump, but he was nowhere to be seen.
I seem to have had a significant number of diabetes in the wild experiences recently. Even though I am frequently around others with diabetes, I still get a thrill when I find myself seeing evidence of diabetes out of context or unexpectedly. When I am in a room full of others with diabetes, my experience is legitimatised and normalised. But perhaps that is the case even more so when I see someone just going about being themselves, doing their daily activities. With a little diabetes add on.
There’s no rhyme or reason why songs go through my head. Here’s one that has been on repeat in my mind for the last three days.
Consumer engagement. There are a couple of buzz words if I’ve ever heard them.
Today, I am attending the Health Issues Centre Forum, ‘Listening to the Consumer Voice: what does healthy dialogue look like in 2015?‘ I was the opening presenter where I spoke about the role of the consumer in healthcRe.
My position is clear – consumers have a place at every conversation taking place about healthcare. Whether it be at a governance, strategic or operational level, the voice of the consumer should be the loudest and proudest in the room.
All too often, this representation is tokenistic. It is an all-too-simple ‘tick-the-box’ requirement of health services. And it’s the same in the broader health community.
Most of what I have heard today I have heard before. This discussion has been going on for a long time, and as one of the speakers said ‘Why are we even having this conversation anymore?‘ And he is right. Why do we need to be defending the right of the consumer voice? Why is it not a given?
My talk was followed by palliative care physician, A/Professor Natasha Michael who gave a fabulous talk about the challenges faced by clinicians for finding the balance between ‘benevolent paternalism’ and patient autonomy.
Her analogy was simple – if she contracts an electrician to do some work for her, the last thing she wants is the electrician to stand in her house and ask ‘Where would you like me to put the green wire? And the red one? And the blue one?‘ They are the expert – that’s why she called them.
At face value, that sounds reasonable. But actually, I don’t think I really am comfortable with it because it completely minimises the expertise I have gathered in the 17 years I have lived with diabetes.
When I expect to engage in a dialogue with my HCP it is not discrediting their expertise; it is acknowledging that I have something to bring to the table.
At a higher level, consumer involvement can emote difficult. How are consumers included in strategic decisions, on boards and at a governance level? And how does that work?
Possibly my favourite take-home message from today came from Damian Ferrie who is the CEO of Inner South Community Health. Damian said that measuring if consumers are participating in a meaningful way is quite easy: ‘If consumers have no power to influence in your organisation, it’s tokenistic.’
I wish I could say that I am seeing more examples of consumers having power to influence, but that isn’t the case. Our involvement is still tokenistic. It is largely unpaid which further reduces our worth.
And yet, health services and health organisations claim frequently that they are listening to the consumer voice, that consumers are critically important, that consumers are the basis of their work.
By and large, I think it is lip service, with primarily examples of organisations talking the talk, but not walking the walk. And that is why we are still having these conversations. We need to be. I wish we didn’t. But we do.
Baby, it’s cold outside. It really is. I am shivering my way through most mornings, cursing the cold and complaining about how far away Summer is. Which is all really weird because I think the coldest it’s been is about 7 degrees (Celsius), and a mere few months ago, I was delighted and delighting at the New York snow. I think that’s what I need. Snow in Melbourne. Snow makes the cold worth it.
Anyway, sit somewhere warm and have a read at what I have been checking out lately.
She quits helmets
I’ve made no secret of the fact that I think Sarah Wilson is a fool. She has done nothing to alter that opinion with her rant and rage against mandatory helmets for cyclists. She wrote this at the end of last year and it has resurfaced, once again showing how irresponsible and downright stupid she is.
If I had a superpower, it would not be flying or invisibility or a magic unicorn. No. It would be to mute people who are dangerous; people with D-grade celebratory status with a following who sprout harmful rhetoric. Sarah Wilson would possibly be first on my list.
beyondblue
Yesterday, this media release from beyondblue had me cheering. Raising awareness about men’s health – in particular men’s mental health – is a tough gig and beyondblue are doing a damn fine job trying to cut through.
Inside Out
When I saw the preview for the new Pixar film, Inside Out, I was so excited. What a gentle, fun, and enjoyable way to talk about mental health with kids. I couldn’t wait to see it. I still can’t. Aaron took the kidlet and one of her friends to see it while I was in the US and they all thought it was terrific. And it has sprouted some really interesting discussion about the topic.
I love this article which talks about the importance of having a strong female character as the protagonist of the film who is not a princess.
Jenna from the Block
A few years ago, Jenna and Josh were contestants on the Block. Josh was diagnosed with type 1 diabetes a couple of years ago, and this moving story from his wife, Jenna, is doing the interweb rounds here at the moment. Thanks for raising awareness of diabetes, guys!
Up your nose
Glucagon injections are not fun. They are not fun for the person who is jabbed (the jabbee?)– mostly because it means that they are having a nasty hypo that warrants being jabbed – and they are not fun for the person doing the jabbing (the jabber?).
Under what is usually an incredibly stressful situation, the ‘jabber’ has to open the little orange box, draw up things into a syringe, shoot it out again, mix it up and then inject it.
Not. Fun.
So, it is with great interest that I have been reading about the trials of inhalable glucagon. Read about it here.
Friends like this
My friend Alecia is awesome. She is uber-talented (her jewellery designs are stunning and her lighting designs a marvel) and is so much fun to hang out with – even if she makes me drink things that taste like orange bathroom cleaner.
We hung out recently in NYC, where she took me to a gorgeous place for dinner and we ate the best Brussel sprouts ever. And then I took her to hear some jazz where she made guitarist Mike Stern kiss me three hundred times so she could get the perfect photo. I didn’t complain. Neither did he, actually.
She is also slightly crazy. But she is crazy for a cause which, I guess, makes it kind of okay. Next month, she is going to be riding 100 miles on a bike. In our language that’s 161 kms. In whatever language, that’s a long way.
If you can, throw her some coin. All money raised is going towards finding a cure for diabetes. Which she has had for 36 years, and since 2001, has raised over USD$350,000 for a cure for type 1 diabetes. I did mention she’s awesome right?
Music and words
Most weeks, I post a link to music I have been listening to. This is fun. And embarrassing at times. But I also think that I should start to post links to some of my favourite JK Rowling quotes because the number of times she beautifully and succinctly manages to say something that I have been trying to bash out is startling.
For all the blog posts and talks I’ve ever given on the importance of language, I could have simply said this.
Remedy injury. Always.
Gallery
One of the best films ever is the Peter Sellers’ classic The Party. A couple of years ago, we bought our first ever Josh Agle (known as SHAG) print which is a tribute to this fabulous film.
It was the first in The Party series. Somehow, we completely missed the release of the second print (and now can’t find one anywhere!), but a few weeks ago, when visiting Outré Gallery, we saw and bought the third.
Last night, after a couple of hours of lining things up, measuring things, banging hooks into walls (very satisfying), we finally have our SHAG gallery done.
It looks spectacular and this photo absolutely doesn’t do it justice – mainly because it was really difficult to get the whole wall in one photo. Those larger photos in the middle are each about 150cms wide. Nonetheless, here it is! And we can’t stop looking at them!
Drink Nutella
I mentioned it’s cold, right? Well, here is a nice way to warm you up. Nutella hot chocolate. Just because.
Diabetogenic 