Diabetogenic

Hours and hours of nothing

June 22, 2015 in Hypo, Lows, Real life | 1 comment

I was low on Saturday. For hours and hours of Saturday. I cannot tell exact numbers for the exact time because on Friday my CGM sensor died and I removed it ceremoniously (i.e. ripped it off in the shower) and didn’t replace it. A few BGL checks give me some information, but not a complete picture. Because that’s the imperfection of modern BGL meter technology.

At about 6pm as the kiddo and I were sitting down to our ~~145th~~ 6th episode of the Gilmore Girls for the day and eating home-delivered noodles out of a box I started to feel crapola which is the a highly technical term for ‘jeez, I’m low’.

BGL check showed that I was about 2.7 on the crapola scale, so I downed a juice box, and ate my way through my carb-laden noodle box. That should have fixed it. Several times over. But it didn’t.

At about 10pm when I was thinking that an early night was in order (because: effing jet lag) I started getting ready for bed and realised that I was low. Again. Or still. I wasn’t sure. Another juice box and I figured I’d be right.

And then an hour later, warm in bed, reading some Truman Capote, I was still sitting just under 3.0, so I drank more juice. By this stage, I was pretty sure that spikes were about to start growing out of my head. Around 12.30am when Aaron got home from his gig, I was sitting up in bed, munching jelly beans.

‘Hypo?’ he asked.

‘Yep. For hours.’ I said. ‘Hours and hours.’

This was one of those lows that is so non-eventful. It is what healthcare professionals and all diabetes books refer to as a mild hypo because at no time was I in any way afraid that I couldn’t manage it myself. I just munched on or chugged down glucose, willing my BGL to get moving upwards.

I didn’t feel scarily low – there was no profuse sweating or shaking or numbness. I felt slightly woozy when I stood up or moved suddenly, but nothing scary. My heart rate didn’t increase. I didn’t feel out of control. I wasn’t afraid.

And it was all for no apparent reason. Hard as I tried, I couldn’t explain why the low just would not budge– I’d not done any sort of prolonged physical activity or forgotten to eat. I’d barely bolused for my uber-carb meal.

If I had sensor in, the squiggle would have been pretty straight for hours and hours and hours – frequently dipping below the low-alert level into the nasty red part that would have had alarms squealing and me swearing.

But all I have are a couple of BGL checks with numbers in the 2s and 3s until I decided I was sick of looking at numbers in the 2s and 3s so stopped checking. Plus I was feeling better.

The next morning, there was no reminder of the night before. I woke up without a hypo-hangover. No headache. No screaming high BGL. In fact it wasn’t until I looked over to my bedside table and saw the empty juice boxes that I remembered. I got up and collected the remnants for the recycling bin. Just another day. Another night. Another hypo. Nothing to see here. Boring as all get out.

Owls and diabetes

June 19, 2015 in Real life | 3 comments

David Sedaris wrote this book:

It came out a while ago (back in 2013), and as with all things Sedaris, I bought it, read it in a day and laughed out loud so many times and so loudly that I annoyed everyone around me.

I first discovered David Sedaris back in 2008. I was standing in line at (the now-defunct) Borders in Carlton. His Holidays on Ice compilation was conveniently placed on the counter, just ripe for an impulse buy. It was a few days before we were about to go to Europe for Christmas, so reading about Wintery holidays seemed like a good idea. I bought it and tucked it away in my carry-on luggage to read on the flight.

I started the book about two hours into the flight and very quickly learnt something about David Sedaris’ writing: it should not be read in close confines. It should not be read when there are people around you wanting to sleep. It should not be read when your husband is sitting next to you and keeps asking ‘What’s so funny? Let me read it.’

Eventually, with me laughing so hard that my sides hurt, unable to see for the tears running down my cheeks, Aaron took the book from me to see what all the fuss was about. His response was similar.

Our absolute favourite story from this compilation is Six to Eight Black Men, which originally appeared in Dress Your Family in Corduroy and Denim. I am not even going to start to tell you what it is about, but I found this gorgeous little video that gives you some idea.

In recent years, David Sedaris has visited Australia. In 2010, when we heard of his upcoming tour, we booked tickets, initially baulking at the $70 ticket price. Seriously? For a book reading? We could go to Readings any week of the year and hear someone give a reading of their book. For nothing. And get a free glass of wine.

However, we forked out the money – along with thousands of other Melbournians. His tour sold out. There was not a spare seat in the Melbourne Concert Hall. And it was brilliant. Hearing him read aloud was mesmerising. Even the stories that I had read – some of them several times – were completely different when read in his very distinctive voice. It was a thoroughly enjoyable night!

We bought tickets as soon as his 2014 tour was announced. Again, the Melbourne event sold out. Again, it was an absolute delight hearing him read not only his short stories, but also diary entries of often mundane occurrences.

Anyway, back to his latest book. When we saw him last year, as soon as he stepped off stage, Aaron and I ran out to the foyer to wait in line for him to sign our copy of the book. I desperately wanted to know what the title meant. There is not a single reference to diabetes other than the title. What did it mean?

Apparently, not much at all! When it was my turn to chat to him, I asked my pressing question. ‘Why ‘exploring diabetes’?’ As it turns out, it came from a book signing – just like the one he was doing then! – when a woman asked him to write a dedication in the book for her daughter. She wanted him to write something about her daughter needing to ‘explore her feelings’. He refuses to write what people ask him to, so he kept the word ‘explore’ and instead wrote ‘let’s explore diabetes with owls.’ She was not pleased. I doubt he could have cared!

He asked me why I was so interested in the title. ‘I have diabetes,’ I said. ‘I was hoping that I would read your book and find the secret to diabetes.’ I smiled at him. ‘I didn’t. But I loved the book nonetheless.’ He handed me back my book with his signature and a little scribbly drawing. ‘Thank you,’ I said.

‘Oh, before you go. I have something for you.’ He reached into a bag under his desk. ‘You can have some hotel shampoo and conditioner. Because you have diabetes and are special.’

I laughed loudly. ‘Thanks! See – something good DOES come from having diabetes.’

The day I got my grubby paws on this book.

I’ve been singing this song all day thanks to one of my Kate Spade bangles that has ‘You put the lime in my coconut’ written in gold. This version, whilst not the original, is great. Because Muppets. Have a great weekend. (And read some Sedaris!)

ROI

June 18, 2015 in Conferences, Real life, Wellbeing | Leave a comment

It’s fan girl here again. I want to talk more about Bill Polonsky’s talk at the ADA meeting – specifically this:

Polonsky3 This point had me thinking. A lot. We speak frequently about how diabetes is an invisible illness. And it is a lot of the time. This piece I wrote for The Glow last year really resonated with a lot of people with diabetes who thought that it was such a good representation of what life with diabetes is about that it was shared almost 4,000 times.

It’s invisible – we can’t see it. We rarely point to it. And you can’t walk down the street identifying the people with diabetes. (Although I like to think we sparkle a little brighter than the average person and have an aura of brilliance surrounding us, a rainbow above our heads and ride around on a unicorn. Just me?)

But I’m not sure that as a person with diabetes that I have ever weighed up the management aspects of diabetes against the (for want of a better term) return on investment.

ROI is such a big thing in our world. We expect some sort of return or reward for work we put in. Whether it be in our friendships or relationships or work or play. We do something and there is an underlying need to see something come back at us. We seem to expect acknowledgement or compensation and pats on the back for what we have put in.

There’s a problem with that expectation when it comes to diabetes. Because sometimes it doesn’t matter how much effort we put into our diabetes, the ROI is negligible. Not always – sometimes we see results and we can point to our efforts for the improvements. But sometimes – and unfortunately, a lot of the time – we get nothing back.

That all makes so much sense, so I’m not sure why I have never seen that before. Bill Polonsky’s point was such an ‘Aha moment’ for me. I went away and kept thinking about it and started listing the reasons I give for eliminating self-care tasks of diabetes. And they all came down to versions of ‘Because it doesn’t matter what I do, I still get crap results.’

Is it an easy excuse? Maybe. But I ask those without diabetes this: how inclined would you be to keep doing something if you got nothing back in return? It’s why people leave jobs, or relationships or other situations. Not feeling that you are getting something in return for your work? You can walk away.

Of course, we can’t leave diabetes. So how do we keep going – keep up with the hassles of self-care – when the ROI can be so minimal. I don’t have the answers to that one, I’m afraid. I wish I did. I really do.

Throw back Thursday to this post from a few years ago with a meme – 30 Things About My Invisible Illness You May Not Know. Most of it is still applicable today.

Taking advice from my phone

June 17, 2015 in Real life | 2 comments

Whilst I am not supposed to consider my iPhone my primary care physician, today I am taking advice from it.

And adding coffee. Mainlining coffee. (File under #JetLagSucks.)

Fan girl at the ADA

June 16, 2015 in Conferences, Diabetes, Mental health, Wellbeing | 16 comments

One of the highlight sessions I sat in on at ADA was Dr William Polonsky. Bill is the Co-Founder and President of the Behavioural Diabetes Institute, which you can read all about here. He also wrote the book Diabetes Burnout which is on the shelves of many, many people living with diabetes. I refer to it ALL THE TIME, and my copy has become incredibly dog-eared and annotated in recent times. And there was a period of about 6 months where I carried it around with me like a security blanket. (If you don’t have it, you can order it here.)

I’ve seen Bill speak at other conferences I’ve attended – he is one of the speakers I always make a point to hear because he absolutely ‘gets’ diabetes. His talks are always informative, amusing and offer great take-home messages for the mainly-healthcare professional audience. And he is gentle, kind and completely and utterly non-judgemental.

Yes – I am a complete and utter fan girl! But I did manage to keep myself together when I spoke with him a couple of times at the conference. And only slightly squealed when I heard he would be coming to Australia later this year. (Watch this space!)

His session at this year ADA had the title ‘Caring for the patient who doesn’t seem to care’ and right off the bat, Dr Polonsky highlighted the word ‘seem’ in the title.

He started by asking the audience how many of them had, in the past year, seen a patient who didn’t seem to care about their diabetes. Just about every hand in the room went up. Of course they did. Because for many – most? all? – of us living with diabetes, there are times when it all gets too much and we seem to not care.

But then he reminded everyone that even those who seem to not care about their diabetes want to live long, happy, healthy lives.

I don’t know anyone with diabetes – feeling good or not so good about their management – who isn’t hoping to be healthy. No one wakes up in the morning and says they want to have a crappy diabetes day. No one says ‘Diabetes is too much for me at the moment. I hope I have a really bad hypo.’ No one.

In times of burnout, where I absolutely know it looks like I couldn’t give a toss about my health, I wish so hard that I could find ways to break through the exhaustion and lack of motivation and find a way – any way – to do better at managing my diabetes.

Other take home messages from Bill’s talk included the importance of talking about diabetes with a sense of urgency – however without threats. I loved how he suggested a reframing of the oft-quoted ‘diabetes is the leading cause of <insert complication>’, reminding us all of the following:

Polonsky2

Dr Polonsky’s take home messages from this talk were many. He provided some strategies for what might work – and some that should be avoided.

Polonsky1

I listen to talks like this and think they sound so logical and sensible, and wonder why it even needs to be said. But of course it does. Because sometimes – all too frequently – there is this idea that not managing diabetes as expected is a deliberate choice. Or that not getting the results that we all ‘should’ be getting is the fault of the person living with diabetes. Thank you to Dr Polonsky – and others like him, including Martha Furnell, Jill Weissberg-Benchell and our very own Professor Jane Speight – for understanding that there is no fault here. Just a need for better understanding and support.

Being a total fan girl here! Dr Polonsky is my hero.

Represent

June 15, 2015 in Conferences, DOC | 6 comments

I’m back from the American Diabetes Association Scientific Meeting and I am pleased to report that the world hasn’t ended. Despite having in the same room, at the same time (and multiple times!), healthcare professionals, people with diabetes, industry and health organisations, the earth continues to rotate around the sun and we’ve not been plunged into the darkness of the apocalypse. I am relieved.

Actually, I’m totally not. Not at all.

There is much that we can be critical of when it comes to the U.S. health system. But their inclusion of consumers (patients, whatever you want to call us) at conferences is, from where I am sitting, enviable.

I cannot count the number of patient advocates in attendance at this year’s ADA conference. But we were everywhere. We presented, we attended sessions, we connected with each other, we tweeted the hell out of the talks we attended, we spoke with the aforementioned HCPs and people from industry and health organisations. We made plans for ways we could all collaborate and initiated projects that would cross seas and continents and provide support for other people with diabetes.

And the conference was all the better for it.

I return home to where there is, unfortunately, limited collaboration. When there is some sort of partnership or alliance, it is often tokenistic. Frequently, these are the words I hear when a collaboration is first suggested ‘We’ve been told that we should speak with people with diabetes about this project/resource/activity/ program. We’ve been working on it for months/years/decades now, so we think it’s time we brought in someone with diabetes to tell us what they think’.

Let’s be clear: that’s not a partnership. That’s a ‘Shit, we forgot to talk to the people this is meant for. Quick. Do it now. Then we can say we’ve consulted.’

Well, no. Not really.

At our annual scientific meeting here in Australia, you will not see a consumer contingent. There may be a few rogue people there who manage to get by all the rules and regulations because we work in the diabetes field. But by and large, we are a rare sighting. This is, of course, partly due to the Therapeutic Goods Act which prohibits direct marketing of prescription medications to consumers. We are not free to wander around expo halls with the name of drugs in our faces. It is not considered appropriate that people with diabetes attend the sessions aimed at HCPs for fear that we would misconstrue or misunderstand or misrepresent what we are hearing.

But never in my time of attending an event where consumers are welcome have I seen that.

I attended the ADA Meeting to hear about the latest in diabetes. I wanted to go to sessions and hear from speakers about breakthroughs and research and studies that aim to improve the lives of those of us with diabetes. And I did. I spent a lot of time in those sessions. I spoke with the presenters afterwards and felt welcome and included. I asked the speakers when they would be in Australia and made them promise to do consumer talks when they get here – not just talks for HCPs.

And I also spent time speaking with people from industry and hearing about in-development products. I heard about the processes in the US and in other places for subsidies and asked about how they have gone about improving access to their technologies. And I begged that when they say that they have a global team working on something that they remember Australia – reminding them that we may be a long way away, but we are still part of their market.

And I did all this alongside other advocates. It’s amazing how loud our voice becomes when we are together.

DISCLAIMER TIME: Whilst in Boston at the ADA Scientific Meeting, I attended sessions funded by: Medtronic Diabetes: Johnson and Johnson Diabetes and Dexcom. I did not receive any financial (or other) remuneration for attending these sessions.

Enthusiasm

June 9, 2015 in Conferences, Devices, Healthcare team, Pumps, technology | 1 comment

A couple of years ago, when CGM was first launched into Australia, the typical thing happened. The device company took their shiny new product to health professionals around the country, showing off their wares. There were dinners and events and showcases, all highlighting the new technology.

Now, obviously with a product like CGM which requires HCP initiation, it is important to promote the product to the people who will be getting consumers hooked up. I understand that.

Nonetheless, it was with much envy that I saw HCPs being given a trial of the product. They were connected to a CGM and given an empty pump for four days – the number of days a sensor was meant to be worn.

I was desperate to get my grubby hands on one of these. I had read all about CGM and how much people with diabetes living overseas loved it. I read about how it made people feel safer and less frightened about hypos. I learnt that it helped to level out …well…levels. It sounded exciting. I wanted to try it myself.

The HCPs on the trial I spoke to were incredibly dismissive about this technology. Over the few days they were wearing it, I heard comments such as ‘It’s making me obsessive’ or ‘I can’t stop looking at the pump and watching what’s going on’ or ‘When I calibrate it, the numbers don’t match exactly’ or ‘The infusion set insertion process is terrible. I bled everywhere!’

I heard them say repeatedly that the technology was rubbish, that it wasn’t worth the cost, and that all it would do for people with diabetes is make them more distressed and anxious about their diabetes. Plus, it hurt.

Not one of them had diabetes themselves.

I started to get annoyed. I recall sitting with one of them after hearing this pronouncement yet again, feeling quite angry. ‘You know,’ I said. ‘You don’t get to say these things. You don’t get to write off this technology after a few days of wearing it, making claims that it is pointless. This is the latest technology that we have to manage our diabetes. It’s first generation so of course it’s not perfect. The second, third and probably even fourth gen products probably won’t be perfect either. But it is a new and worthwhile tool to help us manage our condition. It is exciting. We are hopeful. You don’t get to trash it.’

I remembered this whilst siting in a session on the first day here at the American Diabetes Association Scientific Meeting. It was a ‘Meet the Expert’ session and the topic was about personal experiences of the artificial pancreas.

Kelly Close (she’s amazing – read all about her here) was talking about her experiences of being involved in trials for a couple of different artificial pancreas projects. It was fascinating hearing about the AP and her excitement about the current technology being trialled – and about what is still coming.

Her enthusiasm was obvious. In fact she actually commented on why enthusiasm and excitement need to be employed when talking about advances in technology. We need to create a buzz and have people talking and asking questions and going on trials and writing (and blogging) about our experiences.

On the panel with Kelly was Chris Aldred (better known as The Grumpy Pumper) whose role in the session was to be the one challenging all the hype. He immediately explained that he had not used the AP, and had some questions. He was skeptical about a few things.

Being skeptical is absolutely okay. We shouldn’t ever blindly accept any new treatment without asking questions, but that actually adds to the buzz. It forces people who have experience with the device to talk about the good things and its limitations. It also helps alleviate a lot of the concerns people may have.

I thought back to my experience with the launch of CGM back home. When the HCPs who were privileged to try the then-new tech were trashing the product, I wish that there had been a voice to be able to respond to those concerns. I wish that the trial of the product had been extended to people with diabetes who could see it for what it was and how its application worked in the real world. And who could share their experiences – absolutely the good and the bad – with other PWD.

That’s exactly what I did when I finally got to try CGM. You bet the first gen was clunky. It did have accuracy problems and I did bleed a little most times the sensor was inserted. But whoa! It was amazing technology for the time and made a huge difference to me. When I understood how the trends worked, I knew how to respond to them. I could address things before they became problems.

I left the AP session on the first day pretty excited and inspired. And wanting to be part of the buzz – either as a trial participant or as someone on the periphery talking about it, reading about it, hearing people speak about it.

‘My mum has diabetes. Type 1.’

June 5, 2015 in Conferences, Diabetes, Family, Real life, Travel | 6 comments

‘Are you here for work?‘ It was just after 7am in LA, and the border security officer looked tired. He studied my passport, holding it up, comparing the photo with the even-more tired-looking, and rather dishevelled, person standing in front of him.
‘Yes. For a conference in Boston.‘ I said, trying to smooth my hair.

‘Oh, the diabetes one?’

‘Yes. That’s right.’ I said. My flight from Melbourne was full of people attending the ADA conference. I know this because I knew half of them. Plus I kept hearing snippets of conversation with ‘diabetes’ being thrown around.

‘My mum (mom!) has diabetes. Type 1. She should go.‘ He said. He flipped through my passport. ‘How long are you here for?’

‘Only for the conference and then three days in New York. I’ll be home in nine days.’

‘That’s not long after travelling so far,’ he said to me.

I smiled. ‘You’re so right. But I’ve left my family home this time. So I don’t really mind only being away for a short time.’

‘Enjoy the conference.’ He stamped my passport and was about to hand it back to me when he looked at me again. ‘Do you have diabetes?’

‘Yes. I do,’ I said. ‘I have type 1. Like your mum.’

‘Do you use a pump?‘ he asked.

‘Yes. And I’m wearing a CGM as well.’

‘My mom needs to talk to you,’ he said. ‘You look healthy. Keep it up.’ He passed me my papers.

‘Thanks. I hope your mum is okay,’ I said, noticing the concerned look on his face – one frequently worn by loved ones of people with diabetes. He nodded and I walked off, heading towards the baggage carousel.

Have insulin; will travel

June 4, 2015 in Conferences, Diabetes, Travel | 2 comments

A typical, frantic, ‘I’m so disorganised’ few hours before getting to the airport. But I have insulin. And I have a CGM fastened to my stomach and an insulin pump tucked in my bra. There are pump supplies in my carry on. Anything else I’ve forgotten can be found easily at the other end.

Don’t forget to follow #2015ADA!

Extraordinary leaders

June 3, 2015 in Advocacy, Awareness, Conferences, Diabetes, Health | 4 comments

Tomorrow, I am flying to Boston to attend the American Diabetes Association 75th Scientific Sessions. (Play along from home by following #2015ADA!)

There will be a strong consumer (reminder to self – use ‘patient’) contingent, which is always terrific. I get to catch up with old friends from the DOC and hear what they have been up to. I learn about new consumer patient-led advocacy efforts that manage to cut through in a way that only people living with diabetes can. I am reminded that conferences ARE the place for people living with the health condition that is being spoken about at that conference.

I attend conferences with my eyes wide open and leave with great excitement. I see new technologies yet to be released here, or still in development. I hear from people on trials of new drugs and devices. And I see the potential and possibilities for making diabetes easier, more streamlined, more user-focused and feel inspired and hopeful. This is good.

But, I am approaching this conference with a slightly different attitude. With some of the recently announced changes to diabetes supplies in Australia (as I wrote about here and here), I really want to speak with some of my US DOC friends about what it means to be reliant on a health system that limits choice. We have never really had that to date.

Whilst we may not have access to every pump or meter on the market, the consumables for the devices that are here have been available to all. Distribution has been overseen by Diabetes Australia (please read the disclaimer in this post!!) – an organisation representing people with diabetes, not big business or shareholders.

Last night, I attended a dinner at Parliament House in Canberra for the Parliamentary Friends of Diabetes Group. It was a grand occasion, attended by many influential politicians. Health Minister, Sussan Ley made this comment:

This is, indeed a noble pursuit.

Diabetes Australia President, Judi Moylan stated:

I would ask that in amidst all of those politically-charged reviews, reports and cost-cutting measures that seem to be the focus of diabetes in Australia at the moment, the human aspect is identified. It is hard to find amongst all the facts and figures.

But it is absolutely critical for our leaders to consider if they want to do best by people living with diabetes. Extraordinary leaders would search for it, find it – and make sure they listen to it. And remember that those extraordinary leaders include people living with diabetes.