Diabetogenic

Choices

August 11, 2014 in Advocacy, Devices, Diabetes, technology | 4 comments

An article appeared in The Conversation last week about how the food industry gets us to buy and eat ‘nutritionally worthless’ foods and drinks. The thing I found most interesting about the piece was when the authors were talking about number of choices we have today when we take a walk down a supermarket aisle as compared with in the 1960s.

Today, supermarkets stock about 30,000 items. That’s a lot of breakfast cereal or yogurt from which to choose. By comparison, anyone doing a weekly shop in the 1960s had between 600 and 800 items on the shelves.

One of the things we complain about in Australia is that we have limited choice when it comes to diabetes devices and management options. This is true when we compare what is available here with the options of those in the USA and Europe. I have seen and held and played with all sorts of devices that I would love to be able to use, but they are not available on our fair shores – and not likely to be launched here either. ‘Market is too small’ is the reason given all the time.

I like choice and as a consumer advocate, I am the first to say that all the options for management of our diabetes should be before us before we make a decision as to what we will use. It frustrates me that I cannot choose to use a T-Slim pump or the OmniPod system.

I’m not sure exactly how many BGL meters are available in Australia, but I know it’s certainly not as many as at any Walmart I’ve popped into when travelling in the US. I’m always astounded at the ‘diabetes aisle’ in these stores.

Do we want that sort of choice when it comes to diabetes management tools? I’m not sure. I guess I like the idea of being able to choose the device best-suited to me. Do I think that we need a choice of two hundred thousand (slight exaggeration) BGL meters that do pretty much the same thing? Maybe not. I actually do think that we have a good selection here from which to choose and don’t really feel we’re missing out.

But it’s a different matter with pumps. There are not really that many pumps on the market to begin with. We have a choice of only four or five here. We don’t have the option of a tubeless pump, which is definitely a point of difference, nor a touch screen pump.

Some may say we shouldn’t complain – that a pump is an insulin delivery device and as long as it does that, everything else is just fancy-pants add-ons that mean nothing.

But surely that same argument can be applied to everything. We don’t need choice in the cars we drive – a car gets us from point A to B – leather seats and auto windscreen wipers are superfluous. Or a phone is a device to call people and chat – cameras, calculators and other applications are unnecessary and bonus extras.

We wouldn’t accept that. We SHOULDN’T accept that.

For me, when it is time to consider a new pump or CGM or BGL meter, the things that are the most important are safety and accuracy. But I do want to be able to line up all the options, look at their particular features and then make an informed decision. It’s my right to choose.

Desert island play list

August 8, 2014 in Diabetes, Travel | 1 comment

‘Which five albums would you want with you on a desert island?’

Putting aside issues of how to play the albums (I’ve not watched enough Gilligan’s Island to work out how to fashion a coconut, palm frond and pile of sand into a sustainable electricity source), it’s fun (and hard!) to think of the five albums I’d want to listen to repeatedly until rescued by Captain Jack Sparrow.

It’s just as fun to decide the five movies or five books I’d choose. (At least with the books, electricity is not needed.)

But what about the five diabetes things I’d want with me if I found myself stranded?

Disaster management when it comes to diabetes is something that I have stored in the to-do list at the back of my mind along with sorting out my Will and cleaning out the third drawer in the kitchen. I know I should do them, but really, really, really don’t want to. I’ll get around to it eventually.

I also think that given my personal situation – inner-city living, five minutes from the nearest tertiary hospital, know heaps of people I can call on if all my diabetes supplies get eaten by a wild animal etc. etc. it’s not likely that I am going to need to set my disaster plan in action any time soon. But never say never, right?

The only time I really think about it is when I am travelling and there is a (tiny) chance I could lose all diabetes supplies on me and be somewhat stranded without the support and emergency back-up I’m used to. When I travel, I over-pack for any situation. I take two spare pumps, enough diabetes supplies to last at least twice the time I’ll be away and make sure that everything is packed in a bag that is never out of my sight.

But…what if?

Well, for the sake of the diabetes desert island play list game, I think it would be the following:

Insulin – obviously. Lots of it. And some way to deliver it. While I am very attached to my pump (literally as well as figuratively), for the sake of this exercise, I’m going to say that I’ll use syringes to deliver said insulin. That way, no need to worry about batteries, pump failures, infusion sets, reservoirs etc. etc. I’d also want a BGL meter with a very long-life battery and lots of strips. Of course I’d need lancets. Ha-ha-ha-ha. Just kidding. I’m assuming it’s going to be hot on the desert island, and warm weather always results in lows, so I’ll need enough jelly beans to see me through until I find another source of glucose (hoping there will be a plantation of delicious berries somewhere). And finally, a Nutella tree. Just because.

Whilst I doubt (hope?) I’ll never be stranded on a desert island, this exercise reminds me once again that diabetes adds that extra layer to thinking about how to manage different circumstances. But I think my list is sorted. I am now going to spend some time watching Gilligan’s Island to really prepare myself.

Friday tunes. This would definitely be on my playlist. Because even if stuck on a desert island, I’d still want to listen to Tom Waits.

Brittle

August 7, 2014 in Awareness, Diabetes, Diagnosis, Healthcare team | 6 comments

‘You have brittle diabetes,’ the diabetes educator told me, regret in her voice.

Brittle. It’s such a sharp sounding word – all edges to cut yourself upon.

I first heard the term ‘brittle diabetes’ about three years after I was diagnosed. It was handed to me as a grave diagnosis within a diagnosis. Not just diabetes for me. I had brittle diabetes. I heard it, thought about it, said the words a few time together, jarring at the sound.

I was given this ‘diagnosis’ during a really rough period. My diabetes was all over the place thanks to a totally unrelated stomach issue. There were thoughts it may have been gastroparesis or, for a moment there, thanks to the significant weight loss I was experiencing, an eating disorder.

I became terrified to eat because every time I did, I was in extreme pain. At times I threw up everything I ate, other times I didn’t. My blood sugars were all over the place and the delightful insulin regimen which at the time involved Protophane was incredibly hopeless at doing anything other than send me plummeting low, or sky-rocketing high. It was a very tough few months.

I was seeing doctor after doctor after doctor. And all anyone could think about was my diabetes. My brittle diabetes. I was told: ‘This is what your diabetes is like. Sometimes there are no answers and we can do nothing to better manage things. This is it for you.’ There was an undertone of ‘get used to it, love’.

I wasn’t prepared to just accept it though. I wanted to have a baby and I knew that there was no way that I could even consider going down that path while my health was all over the place.

I finally sacked all the health professionals I was working with and sought out someone – something – else. I refused to believe that this was how I was going to be forever. I knew there were answers; I just didn’t know how to find them.

I found a new endo and when I walked in I told her that I had brittle diabetes. ‘I can’t be fixed, apparently. Give me everything you’ve got!’ I thought silently.

‘I don’t like that term,’ she told me gently. She wasn’t rude about it; she just explained that she thought we could work out why things weren’t going so well. And then, she went about finding answers. And we found them.

It took time and it took a lot of thinking outside of the square. It took putting diabetes to the side and not thinking that it was the only reason for all my health problems. Once I got sorted and my stomach was sorted and I spent some time talking things through, my diabetes was much easier to manage. I know that a big part of getting through was not only addressing the physical side of things. There were mental health issues I needed to address, mostly dealing with the grief I was experiencing about having to let go of my life before diabetes.

I too came to not like the term ‘brittle diabetes’. When I hear it now, I want to ask what else is going on. And I can’t help wonder where I would be now if I had just accepted that as my lot in diabetes.

Want more? Mike Hoskins wrote this interesting post on Diabetes Mine last year.

No glitter today

August 6, 2014 in Hypo, Lows, Real life, Wellbeing | 3 comments

Yesterday, I won at diabetes.

My BGLs sat between 4 and 6 all day. Every time I pricked my finger to check, a beautiful number stared at me. My usual clumsiness was absent and my diabetes tasks were fluid and smooth. If I was in a movie, there would have been soft lighting, a very cool soundtrack and possibly glitter. Or fireworks. I love fireworks. And a unicorn. Yes, a unicorn.

But did I enjoy it? Not so much. Because I was incredibly suspicious of it all. I was waiting for the moment where things would turn. Or I refused to believe my BGL meter – I checked four times on three different meters at one point to prove that there was no way I could be sitting at 5.0mmol/l. I was – at least within a 0.2mmol/l margin.

I couldn’t relish the fact that I was feeling ‘even’. I couldn’t just say ‘this is a good diabetes day’.

But it was. When the day came to an end, and I scrolled through my meter readings, it was a good day, based on numbers.

Diabetes has a way of sucking the enjoyment out of life. Those days when we are low, low, low or high, high, high our energy is zapped and we feel just blah (technical, highly-scientific terminology there). But that kind of makes sense. Low blood sugar sends me into a fog. So does persistently high blood sugar. I feel crap. I worry about things. I hate diabetes.

It annoys me that on the days where I’m ‘just right’ and not feeling terrible I can’t (or don’t) just cruise along and feel great.

It was back to reality today. A lovely mid-teens number to wake up with reminded me that yesterday was certainly not typical. I’ve been chasing a low since then, and now, as I sit down to lunch, I’m sorting out my plan of attack to stop the yo-yoing. That right there? That’s the diabetes I’ve come to know and love expect.

Jump on over to Diabetes Mine

August 5, 2014 in Guest post, HbA1c | 1 comment

Last month, my mate Mike Hoskins asked me to write something for Diabetes Mine. So I did.

It’s called A Word From Down Under, and I’m a little annoyed I didn’t add some commentary about throwing shrimps on the barbie, riding my ‘roo to work, or eating vegemite sangas. Missed opportunity.

Here it is!

Interweb Jumble 2

July 31, 2014 in Awareness, Devices, Diabetes, DOC | Leave a comment

So much going on. So much to do. So much to plan. So many presentations to write.

So….naturally, I’m surfing!

BIONIC
I’m still really excited about the Bionic Pancreas. I know that when we hear of new research it’s often about mice, labs, five years’ time etc. So hearing and reading about the ‘real-life’ applications of this technology has been so very exciting. And hopeful. I interviewed someone who participated in the Melbourne trials (you can read about it in the next edition of Conquest). And for another beautiful, goose bump-inducing read about it, here’s what Kerri wrote at Six Until Me.

BLUE CIRLCE APP
A couple of months ago, the IDF launched a new photo app to help raise awareness of diabetes. You can add a blue circle to any photo and then share on social media. Here’s my latest masterpiece:

ZOE BOWIE SINGS
Earlier this year, I sat on a Google Hangout panel with Jamie Tripp Utitis who recently presented at the Doctors 2.0 and You conference in Paris about her beautiful new book ‘Zoe Bowie Sings, Despite All Sad Things’. Jamie wrote this book for kids with a parent with MS. Jamie writes an awesome blog of her life with MS. You can read it here.

WHERE ARE THE PEOPLE?
I threw a huge tantrum let out a huge sigh of defeat when this appeared in my (virtual and real) inbox today. It’s the promotion of a conference in Melbourne later this year about the future of primary care. One of the focuses is patient outcomes. Looking through the myriad speakers what do I find? Not. A. Single. Patient. In. Sight.

SCRIBBLES
Mike Lawson (who I was lucky enough to meet briefly at year’s ADA conference) recently started ‘Scribbling My Life Away’, a blog of his drawings. It’s not really, diabetes-related (although there is the occasional diabetes reference) but nonetheless very cool. (And, Mike, if you’re reading this, can you please do me a scribble of a jar of Nutella and a big spoon. I’d like to put it up in my office?)

SWEET PRETTY THINGS
Totally, completely and utterly not diabetes-related, but I can’t stop looking at the gorgeous artwork of Aussie Illustrator Kerri Hess. I am trying to work out how I could commission a life-size piece that would fit perfectly on a big blank wall in our bedroom.

MEOW
In other news, a cat café opened in Melbourne this week.

CRAZY BIKE RIDING TYPE 1 PEOPLE HEADING TO VIENNA
Last year a group of mad folk with type 1 diabetes rode from Brussels to Barcelona as part of the mHealth Grand Tour. Not content with this achievement, the group known as Team BG, will be doing it all again, kicking off in Barcelona and heading to the location of this year’s EASD conference, Vienna, where I intend to greet them and call them all crazy. I might then buy them a beer.

HAVE YOU REGISTERED YET?
A reminder that TODAY IS THE LAST DAY to get the early bird rate to attend the first ever ADS-ADEA Consumer Outreach program. Book now!

Diabetes is like Goldilocks (stay with me)

July 30, 2014 in Awareness, Real life, Wellbeing | 1 comment

How often do you think about diabetes in a day? In an hour?

On those days that I think of diabetes about once an hour (when awake), I know that I’m doing okay. That may seem a lot, but it could be because I’m checking my BGL, bolusing for something I’m eating, doing a line change, thinking about eating something, making something to eat, about to drink a coffee with added sugar. It could be when I am getting dressed in the morning and remembering to reconnect my pump or pulling my pump out from my bra to check my CGM.

Sometimes they are passive thoughts, other times deliberate and actioned.

When this is my activity level, I know that I’m tracking okay.

But when I go for a few (say 4 or 5) hours or even a whole day without thinking about diabetes, I know I’m not tracking quite so well. On those days, I don’t check my BGLs, I don’t check what my CGM is telling me (maybe because I’ve not got a sensor in, maybe because I just can’t be bothered), I may not be eating particularly well or at all, so don’t bother bolusing. Sure, I passively thought about diabetes when I stepped out of the shower that morning and reconnected my pump, and perhaps I blind bolused for the sushi roll that made up lunch, but that could be my entire day of diabetes ‘chores’.

And equally, if I’m thinking about it more than once an hour, I know that something is not quite right. It could be that I’m high and trying to manage that by checking my BGL every 10 minutes hoping for a drop – even a teeny tiny drop – in numbers. At the same time, I’m anxiously trying to walk the tightrope that is enough insulin to bring me down from the hyper ledge, but not rage bolus and send me crashing. I’ll probably be starving, so I’ll be thinking about food and calculating carbs and making deals with myself as to what my BGL has to get to before I can eat.

Or, I could be low and trying to deal with the pounding heart rate that is a doof-doof reminder of my hypo-state. Probably over-eating, I’ll be checking my BGL every five minutes, looking for an upward trend in my numbers.

Either way – high or low – I’ll be thinking food, numbers, hoping for balance, worrying about over-treating, over-medicating.

It’s such a fine line.

Too much…

Too little…

Just right.

Revisited – Nothing about us without us

July 29, 2014 in Advocacy, Awareness, Diabetes, Healthcare team | 6 comments

This post was first published in 2011. Sometimes, I think that there is progress being made when it comes to consulting people with diabetes in the development of programs, services and resources for us. Other times, I’m not so sure. Some groups and organisations are incredibly tuned in to people with diabetes (I’m talking about you, Australian Centre for Behavioural Research in Diabetes) and I cannot express enough my gratitude for the high regard of the ideas and thoughts of people with diabetes this group regularly demonstrates.

I stand by what I have written in this post: We are the experts in living with diabetes and we want to work with those who are working to help us. Please, please let us.

——————————

There seem to be a lot of people who like to be the voice of people living with diabetes. Strangely enough, a lot of the time, these voices don’t actually have diabetes themselves.

As far as I am concerned, every single person out there who wants to advocate and support people living with diabetes is terrific. Continue doing it! But make sure that if you are speaking for us you have first heard what we want to say.

Any time an advisory panel or steering committee looking at anything to do with people living with diabetes is formed, the first people invited should be consumers. How can other people possibly advise or steer for us unless they hear what we need and what we want?

If government wants to improve our lot, ask us how to do it.

Experts in diabetes are not the people who care for us. I know how blunt and arrogant that sounds, but it’s true. I have a brilliant team of health professionals around me – I have written of this on several occasions; hell, I even named my daughter after one of them. But these outstanding, talented, exceptionally smart people do not speak for people with diabetes.

I struggle regularly with the way that we are not considered in the planning and development of new resources, activities, devices and technology designed to ‘help us’. When we pipe up and say ‘hey we’re here’, we often get told that we’ll be consulted ‘later’ – often too late when changes cannot, or will not, be made. That sort of consultation is, I’m afraid, tokenistic. It doesn’t count for anything and those doing this shouldn’t get to then say that they did work with the community.

The experts when it comes to making lives better for people with diabetes are us. The people with diabetes. We’re the ones who live with it, love with it, scream at it and want to turn our backs on it in disgust. We’re the ones who agonise, cry, laugh and celebrate it.

Don’t speak for us. Don’t assume. It should always be nothing about me without me. Always. Listen to us. Ask us. Take cues from what we say. Believe me, we’ll tell you what we need.

Am I being too harsh with this? I wonder what others with diabetes have to say and if they feel the same way.

Labels

July 28, 2014 in Awareness, Language, Real life | 1 comment

A few years ago, when the Diabetes Australia Language Position Statement was released, I wrote a post about why words used to describe people matter. At the time, I asked people around me to pick a noun or two that they would use to describe me. The polite suggestions made it on the list which looked like this:

These terms are all still correct. Actually, that’s not true. I’d probably replace ‘Twitter novice’ with ‘Twitter enthusiast’, but the rest are all true. Although, having said that, there have been (brief) periods in the intervening years where things have changed a little. I point specifically to the short-lived-but-still-boasted-about walking period. But that’s over now, so what-the-hey! What you see up there still describes me perfectly.

Many of these words are consistent with what I use for my author profile when I write for another site, or speaker bios when I present at conferences. When I have three or four short sentences, I want to convey the things that are the most important in my life – the focus.

Generally, all bios start with the same thing: ‘diabetes consumer advocate’. This is the bit that is particularly relevant to my work and what it is that I am writing or presenting about. But then there are other things that try to give a fuller representation of who I am. My Twitter profile has ‘wearer of stripes’. A recent bio noted my love of New York. Another pointed to my boot collection. In this blog’s bio, the pets get a mention.

And there, along with explaining where I live and with whom, you will find out that I have diabetes, but this is simply wrapped up in the other things that make me part of who I am.

Why is all this important? Because the things that make me who I am shape my thoughts and experiences of living with diabetes. The inner-city dwelling bit is important because when I write about ‘interviewing health care professionals’ it makes sense. I wouldn’t have this privilege if I was living in a remote area serviced by a single GP.

The scarf collector comment above along with the mentions of striped clothing and boots help explain the sartorial importance of diabetes paraphernalia. (Or I could just be shallow – you decide!)

And if I am talking at a conference about how I use social media for peer support, you can understand my love (and use) of Twitter or Facebook as a means of connecting with people.

Telling you that I am a mum to a gorgeous nine year old goes towards explaining the anxiety I feel when thinking of the genetics of type 1 diabetes. And when I write about how worried I am about how diabetes impacts on those around me, you can appreciate why I’d feel that way because I’ve briefly mentioned my immediate and extended family.

Even if we say – and truly want to believe – that diabetes doesn’t shape us, the truth of the matter is – it does. Of course it does. How can a condition that is so present, sends out reminders constantly, requires so much time and attention not feature in who we are? If it were not for diabetes, my life would be significantly different today.

I’ve no idea what I would be doing had my beta cells not taken early retirement, but I doubt it would involve being an advocate for a condition about which I know nothing (which is precisely how much I knew about diabetes before my diagnosis). But here’s the thing. All of those other things – the family, the love of travel, the addiction to coffee, the preoccupation with words and punctuation, being drawn to stripy clothes and loving cupcakes – those things would still be the same. All of them. It’s the diabetes that would be different. It just wouldn’t be there.

White flowers

July 25, 2014 in Real life, Wellbeing | 4 comments

Yesterday afternoon, I made a mercy dash to the florist because I felt an overwhelming need to have some white flowers in the house. On our kitchen table, we now how a huge bunch of early cheer sending out the sweet fragrance of the promise of Spring, and in our bedroom is a bunch of pretty, delicate white roses.

Flowers and anniversaries go together, hand in hand – sometimes as a celebration. Other times to commemorate.

The last couple of weeks have been quite difficult for me as it’s the anniversary of my miscarriage. Twelve months ago today was the final in a series of operations I needed – I guess it represents the ‘closure’ of the pregnancy. The actual date of the miscarriage was two weekends ago, and it was a tough day for me. And today is also a difficult one.

Anniversaries – the good and the bad – are important to me and I like to mark them all in some way. Not everyone feels this way, but for me celebrations such as birthdays, wedding anniversaries, diaversaries, are significant and definitely should be recognised. This doesn’t necessary mean with grand gestures, but at least an acknowledgement. I also believe in commemorating the sad occasions.

Perhaps fortunately, it has been a very busy time at work, so I’ve not really been able to think too much about this particular anniversary. But in quiet moments, when I’ve been alone with my thoughts, the memory of what we lost and what could have been has occupied my mind.

This weekend I’m planning to take things a little easy. The flowers in our home will be a reminder not only of what happened, but also how far I’ve come in the last twelve months. Gently, gently, moving forward.