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‘Really?’
How many times have I heard that response when people find out I have diabetes. An upwards inflection, a little surprise, a lot of confusion. I know that it is an involuntary response – perhaps because people weren’t expecting that to be the explanation to their question about the pager-like device I have just pulled from under my clothes, or the little beeping machine on my lap, or why I am guzzling jelly beans like a woman possessed.
We know that it is because diabetes is an invisible condition. Unless you look for the signs, who can tell that my beta cells stopped working over 17 years ago? And even if you did look for the signs, what exactly would you be looking for?
We talk a lot about how frustrating it is to have a condition with limited visible signs. It means that people say things that annoy and frustrate us, or that people have limited knowledge and understanding of just how much work goes into living with a condition that has such limited visible signs.
But sometimes, I am grateful for the invisibility. Sometimes, it is nice to be able to package up all the diabetes things and keep them hidden away – to tuck my pump more securely in my bra and make sure that there is no tubing poking out and to hide away my BGL meter and jelly beans and glucose tabs. It’s nice to not give people a reason to ask.
I know how exhausting it can be answering the myriad questions people have about diabetes. Of course, a lot of the time they are downright rude, but most of the time, they are borne from nothing more than human curiosity. Sometimes it’s great to try to explain what living with diabetes is about to someone who genuinely wants to know, or to share my diabetes story.
How we each deal with our diabetes is highly personal. We can shout about it from the rooftops, we can whisper about it amongst only those we choose or we can remain silent and not share with anyone. And it’s all okay – it’s okay to change how we want to speak about it.
This last week, a lot of people have asked me about the green band around my wrist. I explain that it is from a conference I attended for people with diabetes.
‘You have diabetes? Really?’
I nod. And sometimes I sigh. Or smile. But I answer their questions. I gently point them to kind ways to talk about diabetes. I highlight how there is no one way that people with diabetes look. I bust some myths and ask them questions about their diabetes knowledge.
And frequently, I hear them say, ‘I had no idea about that. I had no idea that there was so much involved in diabetes management.’
I look at them and take it in. ‘Really?’ I ask. Because I wonder how they could NOT know.
This time last week, I was sitting on a plane, flying back from Friends for Life. As we’d booked this trip at the last possible moment, I was not travelling the long LA – Melbourne leg with Aaron and the kidlet. We hadn’t managed to all get on the same flight and my trip (booked though work) and theirs didn’t coincide.
So I had a lot of thinking time and kept trying to put into words what the Friends for Life (FFL) experience was for me. I found myself tearing up quite a bit, and kept touching the green bracelet that was wound around my right wrist. It’s still there, and I find myself glancing at it when I am sitting in meetings, or as my fingers fly across the keyboard typing these words.
I had an idea of what I was going to experience at FFL. I have spent enough time with FFL alumni and read a lot about it to have formed an impression about what the week would hold.
I knew what to expect.
Excect I absolutely didn’t. I had no idea.
I expected it to be all touchy-feely. I expected lots of hugs. I expected a quiet understanding – of all and from all who were there. I expected to feel included and part of something and welcomed.
And those expectations were all met. Ten fold.
But what I didn’t expect was the sheer, overwhelming emotion of the conference.
And I didn’t expect the science.
Make no mistake. Friends for Life is a diabetes conference in the truest sense of the word. It is not a support group meeting – of course there is support, but it is much more than that – it is a scientific meeting with the focus very clearly on providing up-to-date, evidence-based, important information to people living with diabetes. It’s not dumbed-down – absolutely not! The information presented at FFL would not be out of place at the ADA scientific meeting I’d attended the month prior, or ADS-ADEA conference I am attending next month.
I didn’t expect an exhibition hall that was bigger than what I know I’ll see at the annual ADS-ADEA conference.
I didn’t expect that there would be announcements like the one Ed Damiano made about his work on the (brilliantly named, iLET) bionic pancreas. And when it was made, I didn’t expect the outpouring of emotion, of gratitude, of understanding, of hope.
And running alongside it – as part of it – are the sessions where you sit, and breathe and cry and nod and share your story. Or say nothing and just fill up.
This is not a cult-like gathering of the pancreatically-challenged and our support people. There is no sitting around feeling sorry for ourselves. Equally, it’s not a pep rally where we marched to the beat of the same drum, patting ourselves in the back. Every person at that conference has their own story and while there certainly are similarities, there are also differences.
Friends for Life challenged me. It made me feel uncomfortable at times. The discussions were not all easy and self-affirming. There were topics that I don’t regularly talk about, instead hiding them away in a chamber of my mind that I manage to keep locked away most of the time. I sat quietly in talks about how diabetes affects those around me. I struggled to share my story at times. But I did, often with hesitation, because talking about how diabetes impacts on Aaron and our beautiful girl hurts me in ways that make me feel like I am falling to pieces inside.
I didn’t walk out of all of those challenging sessions feeling great. But I felt validated and I felt less alone. And I understood better that it was okay to speak about those confronting issues, even if what I am feeling isn’t wonderful. I took away from those sessions the ideas and strategies other use and I feel better equipped to manage some of the more difficult aspects of living with diabetes in the family.
I attended FFL as a guest of Children with Diabetes (CWD). For years, I have been begging CWD President, Jeff Hitchcock to bring this event to Australia and while I did that with the idea that it would be great for people affected by diabetes to have the experience, I had no idea just what that experience would mean. I still am not fully cognisant of what the experience has given me.
My expectations weren’t met at Friends for Life. They were exceeded. And I hope that we can find a way to bring it to Australia so that as many people as possible can become part of the FFL family.
A huge thank you to Jeff Hitchcock and the CWD Board for covering my costs to attend Friends for Life 2015.
Some dot point facts:
- It’s National Diabetes Week here in the wonderful land of Oz.
- It’s about all types of diabetes. Every. Single. Last. Type.
- 280 people are diagnosed with diabetes each and every single day in Australia.
- All types of diabetes sucks.
- No one asks to get diabetes.
And now some dot point observations:
- There is no merit in changing the name of the different types of diabetes. None at all.
- I am yet to hear a decent argument about why we should change the name of type 1 diabetes to something else.
- Having said that, if you can incorporate the word ‘unicorn’ into a new name for type 1 diabetes, I might get on board. Although probably not. I just want a unicorn.
- Many health conditions have ‘types’ and ‘sub-types’. There are five different types of lupus. Can you name them? Can you tell me how they are different? If someone said they have lupus, would you be able to engage in a meaningful discussion about their ‘type’ of lupus? I know I certainly couldn’t – and my mum has lupus.
- Quite frankly, I don’t care what type of diabetes the 280 people diagnosed each day have. It is all diabetes and it is all a condition that is significantly underfunded, a condition which carries horrendous stigma and a condition which is crap to live with.
- What I do care about is that there is increased awareness about all types of diabetes. I care that more research dollars are thrown at diabetes. I care that more healthcare professionals know about diabetes and about diagnosing ALL types, quickly. I care that people living with all types of diabetes have access to healthcare and devices and medications and support.
- The whinging and whining and bitching and moaning that is coming from some circles is tedious. Especially considering the whinging and whining and bitching and moaning is being done mostly amongst like-minded people so nothing is actually being achieved.
And finally, a comment:
Last week, I sat in on MasterLab, a two day advocacy workshop run by the wonderful Diabetes Hands Foundation. In the room were some of the most successful, vocal, passionate, smart diabetes advocates in the world. These are people who take their cause to government and make changes for people living with diabetes, who raise awareness about living with diabetes and raise funds to help support people living with diabetes. They do it without fanfare and without accolades. They just do it.
How many times do you think there was a discussion about the different types of diabetes? How many times do you think parents of kids with diabetes in the room tried to say how much tougher they have it than others with diabetes? Or people with type 1 diabetes complaining that no one understands why it is more difficult than type 2? How many times do you think that type 2 diabetes was demonised?
Not once.
Because those smart people in the room – the people who are respected and listened to in the wider diabetes space – know that there is no point in working against each other.
But you know what? I’ve been saying this for some time and there are people far more eloquent than I on the same page.
This is from (US-based) Diabetes Patient Advocacy Coalition (DPAC):
How will you share a unified patient voice for a disease as diverse as diabetes? (Type 1 vs. type 2, parent vs. child, etc.?)
DPAC has committed to the idea that diabetes doesn’t discriminate. We have no interest in promoting cross-type discord. There are benefits of numbers, passion, and reach in various parts of the diabetes community. We all benefit from all those skills. If an individual has an interest in raising their voice to help people with diabetes get access to safe and quality products and services in the United States, then we welcome them with open arms.
Divided we can be ignored. Together we make a difference.
And in her wrap-up of last week’s MasterLab, my friend Alanna wrote this brilliant blog post. And this closing paragraph:
We as a community need to stop putting our walls up. Nobody, not you, not me, not the president of the USA can advocate for change in diabetes care and treatment until we educate effectively. Defending your “type” and throwing the other under the bus is unacceptable behaviour, and is counter productive to creating positive change and a world without the financial, physical and emotional burden of diabetes.
I am calling on all of my readers, old and new to commit to never trying to defend your type, and only defending the human beings who are living with mal-functioning pancreases so we can really get to work.
Another friend, Kerri Sparling wrote this last year, speaking about the wonderful Walk with D initiative.
The diseases are different in their origin but so similar in how they map out physically, and more importantly, emotionally, and I wish I had known that earlier. I wish I had been more supportive of my type 2 peers. I wish I had known how they felt.
I have lost friends because of my stand on this issue. I have had arguments with people who think that I should be using this blog and my voice to advocate for changing the name of type 1 diabetes or rallying against people not understanding the differences between the types of diabetes. I have had people challenge me and ask me what I stand for – what my diabetes advocacy is all about.
The answer is simple. I am against diabetes stigma. I am against building up one type of diabetes at the expense of another. I am for access to healthcare and devices and medications for all people with diabetes. I am for a unified community. I am for the wonderful #OzDOC community which is a beacon in Australia of unity within the diabetes world, and congratulate Kim Henshaw in promoting an inclusive, supportive and downright fun platform for all people with diabetes to connect.
It doesn’t mean we have to agree on everything or all be focusing on the same issues. It just means that we work together and are kind to each other. #TypeAll
Gorgeous new James Taylor CD made its way into our home yesterday. Angels of Fenway is a favourite given that I was there just a few weeks ago.
I accidentally bought an Apple Watch last week.
It was the day before we left for Friends for Life and we were in the Apple Store so Aaron could buy one and then I tried one on and thought about how awesome the Dexcom Share thing is (even if we don’t have it in Australia yet) and convinced myself that the watch was pretty much a medical device and got a little indignant that I couldn’t claim it on my health insurance and justified the purchase by considering the tax I could claim back before heading to Orlando. And then I breathed. (Need help justifying a purchase? Just ask me!)
The Apple Genius pointed out all the features to us and kept focusing on the health apps. I smiled and nodded and stopped listening, because: exercise. I just kept thinking about how cool it would be to take calls on my watch. Like Inspector Gadget.
I set up my watch to do the things that I thought I would use, and decided that I would also set up the activity and health tracker stuff. Gender, weight, height, activity level (low) etc. etc.
Monday was the first day that I actually bothered to check the data. By midday, I was surprised to see that I had done almost 10,000 steps. Somewhere in a part of my mind that is rarely accessed, I remember that we should aim for 10,000 steps a day. I was nearly there! By the end of the day, I had completed nearly 20,000 steps.
I need to admit at this point, that Monday was a travel recovery day for us and we spent it at Disney’s Animal Kingdom, wandering the park and being terrified on roller coaster rides. There was a lot of walking. A. Lot.
The next day, MasterLab kicked off and I spent most of the day sitting in a conference room, walking the long halls to refuel on coffee. My watch started reminding me to move. Every so often, I would feel a gentle pulse on my wrist and this message would flash up:
‘Great,’ I thought. ‘Now my watch is judging me.’
I got to the end of the day and found myself disappointed to see a total of only 9,000 steps – nowhere near the previous day’s activity.
The rest of the week in Orlando saw me regularly checking my steps and doing all I could to make sure that I hit at least 10,000 steps a day; a goal, I am pleased to say, I smashed.
I certainly didn’t get an Apple Watch with the intention of using it as an activity tracker (I have a Fit Bit lying unopened in a cupboard somewhere at home which I could have used had I wanted to do that), but it is a feature that I probably will use sporadically.
But the feature is a good way to check in and see just what I am doing. I’ll be interested to see what my activity is when I get back home and return to normal programming.
And in the meantime, I am waiting, waiting, waiting for Share to be launched in Australia. Because that is a tracking app I am ALL over.
*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
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.
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.
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 