Diabetogenic

Speaking ‘diabetese’

August 5, 2015 in Diabetes, Language, Real life | 3 comments

Despite my parents having been born in Italy, I can barely speak a word of Italian. I can order a coffee, ask for a size 38 shoe or boot, and enquire about where to locate a decent Nutella cornetto for breakfast. I also speak with my hands like a native, so I fool a lot of people into thinking that my Italian must be as good as my Italian hand-waving. Alas, it’s not.

It wasn’t until I was diagnosed with diabetes that I became bi-lingual. That’s right; I learnt how to speak diabetese.

When I am low, I become super fluent in diabetese. It is at that point that words I know to be correct in English completely disappear from my memory and are replaced with words that may or may not work. Frequently they don’t.

The other morning, I announced to the family that ‘I need fooding’. Hilarity ensued from Aaron and the kidlet while I looked on confused and annoyed at their laughter, trying to find the right word, and demanding they stop it and get me a freaking doughnut. Apparently it was so funny that it warranted a Facebook post, where someone kindly responded that I had spoken ‘like a true Calabrese’ (which actually isn’t too far off the mark when I think about some of the words that my grandparents turned from Italian to half-English. My mother still jokingly refers to the first meal of the day as ‘brekkafesta’).

On the same day, I couldn’t remember the word for a particular appliance. ‘Heat that up in the dishwasher…I mean washing machine…I mean microwave,’ I said, desperately searching for the name of the correct white good. (More laughter from the other inhabitants who reminded each other of my earlier ‘fooding‘ comment and laughing about that all over again!)

I don’t even need to be low for diabetese to fall into dialogue.

‘What was Amy Winehouse’s blood sugar level when she died?‘ I asked Aaron when we walked out of the movie the other night. ‘Huh?’ he asked, looking at me. ‘Blood alocohol?’

Of course there is the ability to have whole conversations in acronyms – ‘At the ADA conference I was at a session on IPT and CGM and a CDE pointed out that QoL is as important a measure as HbA1c.’ Makes perfect sense to me and my people.

Being able to speak a LOTE that may only be understood by a (very select, very intelligent) few is kind of special. But I would be more than happy not to have to ever, ever again.

What’s YOUR story?

August 4, 2015 in Diabetes, DOC, Real life, Vlog | Leave a comment

‘Storytelling is the essential human activity. The harder the situation, the more essential it is.’

Tim O’Brien

Let me be your punch line

August 3, 2015 in Advocacy, Awareness, Diabetes | 11 comments

It was a lovely morning – a lazy weekend sitting in a local café, drinking fabulous coffee, skimming through the papers and discussing the Amy Winehouse doco we’d seen the night before. The kidlet was still being spoilt by her grandparents, and Aaron and I were making the most of a leisurely breakfast.

We were at one of our favourite cafes in our area. The coffee is consistently excellent, the food is great and the owner is one of the nicest people I have ever met. Being in his café is one of my favourite things to do on the weekend. (Plus they make the most amazing home-made marshmallows. Totally bolus worthy!)

We finished up after sneaking in a second round of coffees, and meandered to the front of the store to pay.

‘They look awesome,’ the guy ahead of us was saying to the barista, pointing at the delicious-looking fudge-y, chocolate brownies on the counter.

‘Yeah; they are really great. So sweet. You get diabetes just looking at them.’

The next noise was the sound of my head spinning and my hair whipping around.

‘No you don’t,’ I said – loudly enough for them both to hear. The customer turned around and the barista looked at me. I was a little terse, but not rude.

‘I mean it. Really, they are so sweet,’ said the barista.

‘Doesn’t matter how sweet they are. You still won’t get diabetes eating them. You really shouldn’t say that. It’s not true.’ I turned to Aaron. ‘I’ll be outside. I’m done here.’

And there it is. Again. The stupid, ignorant, insensitive, offensive, throw away comments about diabetes. Comments that also happen to be untrue.

At Nova the night before, we watched the heartbreakingly sad story of Amy Winehouse in the brilliant, but harrowing, documentary Amy.

This incredibly talented young woman was hounded by the media as she dealt with addiction. And at the moment when she most needed support and help, late-night television show hosts thought it was amusing to make fun of her. They thought it was hilarious to comment on her alcoholism or weight loss or drug abuse. They thought that a vulnerable young woman who was falling apart was a great target for their cheap jokes.

And apparently, diabetes is too.

It is not funny. People who are living with health conditions are not a punch line. Diabetes is not here to use as a material for a cheap joke. The condition that I work so bloody hard to keep in check – every minute of every single day – is not a chance for you to try to be witty (which, incidentally, you are most likely not!).

All of that came flooding to my caffeine-fuelled mind as I stood there, waiting to pay the other morning. ‘Am I overreacting?’ I asked Aaron when he walked out of the cafe. ‘No. Not at all.’

People who are dealing with health issues – no matter what they are – need support. We need people to try to understand what we are doing. We occasionally need to be reminded that we are doing the best we can.

It’s actually quite simple. Diabetes is not a joke. Stop thinking it is.

Amy Winehouse singing The Girl from Ipanema is a thing of beauty. Here it is.

Tips for travelling with diabetes

July 31, 2015 in Diabetes, Real life, Travel | 6 comments

Come fly with me…. (2015 to Orlando)

By the end of this year, I will have travelled overseas five times and interstate heaps more. And over the last few years, have done a lot of travel – for business and pleasure with my family. So with this recent experience under my belt, I decided to enter Diabetogenic into the Top Travel Tips competition run by Virgin Australia and ProBlogger with some tips and tricks that I have learnt on my travels.

Always visit the city public library. (Boston 2015)

‘Travelling with diabetes’ is just ‘travelling’ for me. It’s not like I can leave the diabetes at home – I asked and it refused. I have never considered diabetes as being a reason to not travel. It just takes some planning. But then, so does travel in general!

Steamboat Natchez (New Orleans 2013)

As I have said frequently, diabetes adds an extra degree of difficulty to life. And it is the same with travel. It’s not anything all that significant, just something to consider. So here are my fail-safe tips to travelling not only safely, but also ensuring that a wonderful time is had.

Camels in the Atlas Mountains (Marrakech 2013)

1. Have fun!

Lady Liberty (New York City 2010)

2. Don’t let diabetes be the reason that you don’t travel. And further to that, don’t let diabetes be the reason that you limit your travel to areas you consider ‘safe’.

Shoes in every possible colour combination. (Barcelona 2013)

3. Read points one and two again.

Ice skating in Central Park (New York City 2011)

4. Work out what diabetes supplies you need to take. And then double it. I know: diabetes paraphernalia add bulk and that is a pain – especially when you are trying to travel light (a concept completely alien to me, because: shoes). It is highly likely that you will end up coming back home with a lot of the extras, but that is a far better option compared with trying to work out how to access insulin/pump lines/BGL strips etc. when you are in the middle of a cooking with truffles tour of southern Italy. (Note to self: find and book cooking with truffles tour in southern Italy.)

The magic of a gondola (Venice 2009)

5. And again – I know it’s a pain, but carry things with you rather than packing them away with your stowed luggage. That way, you know where it all is, and the insulin won’t be subject to significant temperature changes. I do know of people who stowed their insulin and it froze, rendering it useless. And someone else whose luggage sat on the taxiway in direct sunlight for 6 hours cooking their insulin. It’s unlikely, but in rare cases, it can happen. You don’t want to be that person!

Mozart everywhere! (Vienna 2012)

6. To declare or not to declare? That is the question. I never walk up to security and announce that I have diabetes. But equally, if necessary, I am happy to answer any questions. I seem to set off security alarms with alarming (!) regularity. By the time my shoes have come off, and any jingly-jangly bracelets are removed, I still frequently set off the alarm. No idea why. At that point, with a pat down on the way, I do point out that I am wearing a couple of medical devices, pointing to them on my body. I am always relaxed about it and willing to pull them out for show and tell. It’s never ever been a problem. Ever. And I don’t assume that the security person will know what I am talking about, so I use simple terminology when explaining what they are for. Often, an interesting conversation ensues!

Dubai 2011

So on that: stuffed in with my travel documents is a letter from my endocrinologist stating that I have diabetes. That letter has never, ever come out – I’ve never been asked. However, it always there, because it is a piece of paper, weighs nothing and the day I decide I don’t need it will be the day I am asked for official documentation to prove my faulty beta cell status.

7. For pump users. Having an insulin pump undoubtedly makes travel easier. No need to do any sorts of tricky calculations for time zones and working out what time to take your long acting insulin. I always have the same procedure: once it’s wheels down at my final destination, I reach for my pump and reset to local time. That’s it! Done! I don’t do it earlier in case of any delays along the way.

Denmark Street for music stores (London 2014)

TAKE A PUMP BACK UP. Most pump companies offer loan pumps. Just make sure you give yourself enough time to organise one.

Oh, Paris. (2008)

Write down your pump settings. I save the settings in my phone and save a copy in the cloud as well. Because I seriously couldn’t tell you my insulin sensitivity factor (or anything else) if my life depended on it. Which it kinda does!

Pumps fail. It’s a reality. It’s crap. And even back up pumps fail. I know the likelihood is small, but it can happen. And if it does, you’ll still need insulin – both basal and bolus. So with that in mind, don’t forget long acting insulin. You can get pre-filled pens if that is your preferred option (don’t forget you’ll need needle tips!). I take syringes because they are easy to use, light, and do the trick!

8. Travel insurance. Don’t leave home without it. And don’t forget to disclose diabetes.

Apartment doorway. (Rome 2012)

9. Medical ID? Some people don’t go to the corner store without their medical ID. Other people rarely, if ever, wear something (guilty as charged). It is an incredibly personal decision as to whether or not you wear something identifying you as someone with a health condition. Think about where you are travelling, if you will be spending periods alone and if you think that having a medical ID would be the best thing for you.

Montmartre (Paris 2013)

The gorgeous seaside Honfleur in Normandy.

The gorgeous seaside Honfleur. (Normandy 2009)

10. Frio packs are great if you are travelling to hot places and you are not sure the availability of a safe fridge. I have found (increasingly) that some hotel rooms don’t even have fridges in them anymore; in Boston, I spent 10 minutes looking for a cleverly hidden fridge in my room at the Hyatt only to realise that there wasn’t one! Having said that, insulin is a lot hardier than our pharmacists would like us to believe, and it won’t disintegrate before your eyes if it’s not refrigerated constantly.

11. One of the best things about travelling is exposure to new foods. Often what you are eating and its nutritional value are a complete mystery. Eat it anyway. You can always correct a high blood sugar or treat a hypo. Don’t let diabetes be the reason to not try the local delicacies.

So much delicious food. Carb counting is your friend!

And while we’re talking food – think about the food available while you are actually in transit. Aeroplane food will never be the best food you will eat. I have never, ever, ever ordered the meal for PWD, but I know others who do and say it’s fine. Don’t think you HAVE to order a special meal just because you have diabetes.

There seem to be some recurring themes in our travel photos. (Coffee everywhere)

I always make sure that I have my own hypo stash while on planes. But don’t worry if you don’t (or if you’ve already munched your way through). You can always get juice on flights. (Don’t forget – on some flights food and drinks are not included in the fee and you will have to pay on board.)

Ampelmann (Berlin 2012)

12. I don’t exercise, so when I travel, I spend the first couple of days low until I remember that I am walking miles and miles and miles. And then remember to alter my basal rates on my pump. (If I was smart, I would do this before the hypos start. I am hoping to become that person one day.) Same thing applies, of course, if you are usually super active and suddenly doing nothing but lying on a lounge chair, reading a book and doing nothing more than waving your hands at a waiter for another cocktail.

13. The Diabetes Online Community (DOC) is your friend! There are people with diabetes EVERYWHERE and we’re a helpful bunch! If you’re in a pickle, social media might just be the thing to connect you with someone to help you out. (And here is the famous Pumpless in Vienna story again.) And even if you are not having a diabetes crisis, travel is a great chance to meet up with people you’ve gotten to know in tweetchats and diabetes discussions online.

Bright (xmas) lights, big city (NYC 2014)

Bright (xmas) lights, big city (New York City 2014)

One of my favourite things when travelling is to do just that. I have spent countless hours all over the world getting to know people from the diabetes online community and they have moved from being wonderful cyber friends to truly wonderful in-real-life friends. Diabetes may have connected us, but there is much more that has secured that friendship!

Yankee Stadium (New York City 2013)

14. Shop for diabetes! (Yep, of course there is a shopping angle.) Shopping overseas gives you access to things you may not find at home – especially if you visit markets and fairs. I have found gorgeous little purses for my diabetes supplies while travelling and one of my favourite bags ever was bought on the Rialto Bridge in Venice from a man who makes all the bags in the store. (I justified the purchase by the size of the bag, telling myself it would carry everything I needed for my diabetes for the rest of the trip!)

Rijksmuseum Bibliotheca (Amsterdam 2014)

Travelling should be fun and exciting and enlightening and enriching. It’s a chance to spread your wings, find new places, meet new people and discover new things about yourself. It’s an awesome ride, and diabetes – whether you like it or not – is there with you. Most of all, remember what I wrote in this post here:

The theory of travelling and diabetes is different for every person and every trip. And every trip I learn something new – and not everything I learn is about diabetes!

We have made a point of visiting somewhere new each year over the last five years.

‘It’s like you don’t have diabetes anymore’

July 29, 2015 in Awareness, Devices, Diabetes, Healthcare team | 4 comments

I recently gave a short presentation on wearable medical devices that provide constant, real time data, and what that means for people on a day-to-day, minute-to-minute basis.
I had a slide that was a word cloud, including some of the (non-sweary) words I use regularly.

Being conscious that the crowd were not all necessarily diabetes-savvy, I focused on the data aspect and what that means for me emotionally more than the technicalities of the technology.

Afterwards, over tea and Arnott’s cream biscuits (Kingstons FTW!), I spoke with a (non-diabetes) healthcare professional – a GP who had never seen either an insulin pump or CGM before.

‘What great technology! It’s like you don’t have diabetes anymore,’ the GP said to me, clearly not having listened to any of my talk – especially the bit where I said sometimes tech could actually be more overwhelming and a constant reminder of my diabetes. Or the part where I said that as much as I love the devices, I still need to drive them and do a lot of work.

I shook my head gently and smiled. ‘I wish. And one day, I hope it will be like that. But this tech, whilst terrific, is part of my arsenal in the significant self-management tasks I do each day to manage my diabetes.’

He looked far less impressed.

‘Oh,’ he said. ‘So it’s not all that great?’

‘No, no. I’m not saying that.’ I wondered if he had actually heard anything I said. Because as much as I talked about the overwhelming side of the technology and all the data, I spoke a lot about how useful it is too.

‘It’s complicated,’ I said. ‘Sometimes I love this tech; other times I hate it. But mostly, I am glad I can use it the way I want.’

I munched on my Kingston biscuit, thinking. ‘I guess it’s kind of how I feel about my mobile phone. I love it – it means that I can reach everyone I want to whenever I want to and they can reach me. It means I can check Twitter and Facebook to see what everyone is up to. I can check the weather. I can receive emails and reply to them all the time. It’s great, right?’

‘And it’s a pain in the arse as well. Pretty much for all the reasons that it is great. But regardless, I wouldn’t be without it.’

He nodded. ‘I think I get it now. That’s an analogy that makes sense to me. Diabetes is so huge. A lot of it doesn’t make sense.’
It was my turn to nod. ‘So much of the time I am guilty of forgetting that not everyone gets the intricacies of life with diabetes. I try not to have expectations that people know about it, but find it difficult to explain. Maybe I need to come up with non-diabetes explanations.’

‘Like ‘life is like a box of chocolates?’ Forrest Gump managed to do it.’

I laughed. ‘Actually, that’s a pretty good analogy for diabetes too,‘ I said.

He thanked me and walked away, promising to learn more about diabetes technology.
I spoke with a few other people, ate another (couple of) Kingstons and got ready to leave. As I was collecting my things, I heard the GP speaking with someone else. ‘The technology is great,’ I heard him say. ‘But it can be frustrating at times. Kind of like the frustration from having a mobile phone and being reachable all the time.’

I smiled to myself and left the room.

It was 94 years ago today

July 28, 2015 in Awareness, Diabetes, Real life | 7 comments

(Well, yesterday, but whatever.)

There has been lots of discussion about what happened 94 years ago yesterday – on 27 July 1921. University of Toronto scientists Fredrick Banting and Charles Best successfully isolated the hormone insulin. Today, that means that I am alive and kicking, 17 years after my islets stopped making any.

It means that type 1 diabetes treatment moved from being a starvation diet and not much else, to injecting a drug that was life giving and life saving.

It means that I take a drug that while giving me life, is also lethal and if not dosed carefully and with great consideration can cause terrible side effects.

It means that people with diabetes don’t die terrible, agonising deaths simply because they were diagnosed with diabetes.

It means that I need to be able to do crazy calculations to ensure what I put into my body completely and utterly imperfectly mimics what those with functioning islet cells do completely and utterly perfectly.

It means that there is a treatment therapy that gives us hope and life and allows us to live – sometimes very long, long lives.

It means that each and every day I feel fortunate to have been born when I was and not 100 years earlier.

It means I take for granted that I have access to a drug that keeps me going.

It means that there are far too many people around the world who still do not have access to the drug I take for granted. And 94 years later, that is not good enough.

It means that it was 94 years ago – 94 years ago – since the discover of insulin to treat diabetes and we are still without a cure.

And it means that I wonder when there will be the next breakthrough that is as significant and meaningful and life changing and life saving as what those two Canadian scientists discovered 94 years ago.

But mostly. It means that I live with hope. Hope that those scientists are somewhere working away, and perhaps – just perhaps – are about to find that next big breakthrough.

Hope banksy

Renza and the terrible horrible no good very bad diabetes day

July 27, 2015 in Awareness, Diabetes, Real life | 3 comments

Any day that sees a BGL of 32.4mmol/l is not going to be fun.

It happened around midday on Saturday. It came from nowhere. In range BGLs at waking. Trip to a new café for a breakfast of delicious coconut-y porridge and milky coffee. A quick trip into the city to buy a birthday present for one of the kid’s friends who was having a party that afternoon.

So far, so fun.

And then, suddenly, nausea hit.

At that point, I realised just what a bad diabetes day it was about to become. I’d changed handbags that morning and my BGL meter hadn’t made the transfer. I was CGM-less as well, so apart from the nausea and a slightly dry mouth, had no idea if I was high – or just how high I was.

Thankfully, we live less than a ten minute drive from the city. We got home, me holding the bag that had contained the present close by in case the feeling of nausea became the real deal.

We made it home. I checked my BGL. Oh yes, I was high. So, so, so high.

I calculated a bolus does of insulin and used a disposable syringe to jab it into my stomach. I changed out my cannula, line, cartridge and insulin, inspecting the old one I’d just removed. It looked absolutely fine. And I’m sure it was fine. I set a slightly elevated temp basal, resisting the urge to set it at 200% – effectively giving myself double the usual dose – and sternly told myself that I needed to let the bolus do its thing. Slow and steady was the way!

Then the vomiting started. Then it ended.

And then I fell asleep. And a couple of hours later, I awoke feeling fine. Well – as close to fine as one can be after a couple of hours of unexplained, very high BGLs and the muscle pain that comes from throwing up.

My BGLs returned to range gradually. The nausea was gone. The mild ketones I’d had earlier disappeared, flushed out with lots of water.

Not fun. At all. But I did what I planned to do that night, brushing off the looks of surprise from my friends when I mentioned the day I’d had. They probably wondered why I was up and out and not curled up in a ball under the doona. There were moments I wondered that too.

If I was to stop every time I had a diabetes thing happen, I’d never get up I thought, but didn’t say it out loud because it doesn’t really make sense to people who don’t have diabetes.

It’s what we do. We get on with things. Because diabetes throws so much our way that we just learn to accept it and push forward. We do it without much fanfare. But sometimes – sometimes – I kinda do feel like I deserve a medal. And yesterday I got one after I did the 5km in Run Melbourne!

Medals for the family!

Threats threats

July 24, 2015 in Awareness, Healthcare team | 10 comments

Can you think of any other medical condition where removal of a treatment is threatened?

I was thinking about that question a couple of nights ago, in my hotel room in Sydney, at 2.30am, getting over a hypo, after chugging OJ, messaging people, tweeting and reading pages of my book. I couldn’t fall back to sleep.

In diabetes, we (still; STILL?) hear of HCPs threatening to remove pump therapy from people who are considered to not be meeting expected results.

Let’s not even open the can of worms asking who actually has set those results, or if the PWD had any input into the decision making process around targets, or if too much focus is being given to a number.

No. Let’s instead just focus on the fact that some PWD are (still; STILL?) being told that their chosen treatment option for their life long health condition will be removed from them as punishment because they are being ‘bad’.

Now, I love my insulin pump, but let’s remember what it is. It’s a little box that delivers insulin. Okay – a little, highly-sophisticated magical box that delivers insulin, but nonetheless, it’s an insulin delivery device.

It would be the same as saying to someone who is using insulin pens that because their A1c has increased, (often the reason behind the threat of pump removal), their pens were being confiscated and they would have to use disposable syringes. Or, people using disposable syringes would have to use glass syringes with needles needing to be sharpened.

Crazy, right? There is no way that we would consider that okay. It’s actually laughable.

Of course, people with type 2 diabetes are not immune to the threats of diabetes management, however in this case, it is threatening to add treatment rather than take it away. People with type 2 are often told that if they require insulin injections to treat their diabetes it is because they have failed with other treatments.

Making threats about diabetes management options is bullying. Holding the tools we need to live well with the condition over our heads as rewards or punishment is not okay. It is scary and unfair and sends the wrong message.

Earlier this week, Aaron and I saw the Melbourne Theatre Company’s production of the play ‘Death and the Maiden’. It was fabulous – amazing performances – and if you are in Melbourne and looking for a night at the theatre, get tickets! Here is the Schubert string quartet by the same name, which is providing my background music in the office today. Have a lovely weekend.

Uncomfortable

July 22, 2015 in Uncategorized | 5 comments

Over the last couple of days, this meme has found its way across my social media feeds several times:

Each time I’ve scrolled past it, I have felt uncomfortable. For a number of reasons.

Firstly, I wouldn’t wish diabetes on anyone – even for a day.

But mostly, because for this to be true and fair, then surely it could be said of each and every health condition. Surely if people with diabetes expect others to walk a day in our ~~shoes~~ pumps (see what I did there?), then those with every other condition would expect the same.

Really?

July 21, 2015 in Awareness, Diabetes | 1 comment

‘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.