Diabetogenic

A better way to spend thirty bucks

December 18, 2015 in Advocacy, Awareness, Diabetes, Real life | 1 comment

At the risk of sounding Grinch-like, there is one thing about Xmas that really, really annoys me. It’s Kris Kringle (sometimes called Secret Santa). We also do a version called ‘Bad Santa’ which is unusually cruel in that people are able to steal gifts they prefer from others.

I find them all a complete and utter waste of time and, quite frankly, money. All up, we (Aaron and I) spend about $120 on KK gifts each Xmas – four KK gifts at the limit of $30 per gift. Please understand it is not the total cost that annoys me. It’s the total waste of it.

At the risk of sounding ungrateful, I don’t need anything. And for $30 I struggle to find something that is fun (and different from the bottle of wine/designer tea/candle that I usually buy).

I have made this very clear to my family who, if reading this, please ignore my Scrooge-iness and let’s all have a nice Xmas dinner!

For a few years now, I have suggested that instead of buying gifts for each other, we pool our $30 each and make a donation to a charity. It actually would add up to a decent amount and has the potential to make a significant difference in the lives of people far less fortunate than us.

Of course, for me, there would be no better way to spend this money than on a charity that is improving lives of people living with diabetes. With the $120 that just Aaron and I spend on KK presents, we could provide life-saving insulin for two years for a child in a country where medication is prohibitively expensive.

I am sure that I will love the bowl or bottle of champagne or colouring-in book I receive from my KK this year. But really, it will make no difference in my life. It will not improve it. Again, I get that I sound ungrateful to the cousin or aunt who has purchased this gift for me, and while I don’t mean to, it is the way I feel.

It feels wasteful. And there are so many ways that the money could be better spent.

So, today I have made a couple of donations. I have made a donation to Spare a Rose, Save a Child, adding to the monthly contribution I already make. The money I have donated will go to the IDF’s Life for a Child program and provide insulin or BGL strips for 12 months to a child who would not otherwise be able to access these supplies.

And I am also making a donation to Type 1 International to help their work in ensuring people with type 1 diabetes around the globe have access to insulin, diabetes consumables and medical care.

If my KKs are reading this, please feel free to give me a handmade card with a little note telling me you have donated the amount of my gift to either of these charities – or another one that you support. I promise that I will think it the best KK present under the tree, and I also promise to stop being a Grinch!

Our Xmas album collection is eclectic. One album that is on frequent rotation in the silly season is Bela Fleck and the Flecktones and their version of The Twelve Days of Christmas is different to say the least! Enjoy if you can.

Some like it hot

December 17, 2015 in Real life | 1 comment

Right now, it’s 36.6 degrees Celsius in Melbourne. By the weekend, we’ll have hit 40 degrees Celsius, and if it the Australian Tennis Open was on now, some tool sports reporter would be frying an egg on the playing surface to show you just how hot it gets in this part of the world.

The warm weather is not a friend of diabetes and I have been really struggling to get myself sorted while dealing with the heat. It took me a few days to work out just where my basal rates should be sitting. This was certainly not helped by the fact that I returned from very cold Canada to warmish Melbourne, which then turned ridiculously cold (we had the fire going last Friday night confusing the hell out of everyone – Xmas tree, carols and a fire is not normal in this part of the globe!) and is now insanely hot, hot, hot. And looks to be staying that way for the next couple of days at least.

But it’s not just basal rates that are affected by the heat.

It can be tough to sleep in the warm weather which wreaks havoc on all aspects of life – diabetes included. Nights were the temperature barely drops below 30 degrees Celsius do not result in restful slumber!

Perspiration means that CGM and cannula tape doesn’t have the sticking power. My most recent sensor lasted three days before the tape started to fray, and because I didn’t attend to it fast enough, it fell out completely after five days.

Loose flowing dresses with little camisoles underneath instead of bras mean that pumps get shoved in the top of undies only to fall out and dangle around my ankles. Or, strapless dresses with little boob tubes underneath give the ridiculous impression of a single square boob. (Too much information. You can thank me for sharing the glamour of diabetes with you)

Concentration flies out the window, a combination of poor sleep and general lethargy – which often means that I am thoughtless about remembering to check my BGLs or make sure my pump is full of insulin (and that I have my spares bag with me). And long periods of being low mean a fried brain that just refuses to function properly at all.

And this is JUST the start of it. We’re only half way through December – the real heat hasn’t even happened yet.

But there are ways to manage.

Lots of cool iced water – lots and lots and lots! Grapes thrown into the coolest part of the fridge or even the freezer offer a quick cool snack and also help to keep BGLs above the low range. Same goes for watermelon which I only ever eat in hot weather when trying to combat nasty lows.

Iced coffee replaces my regular lattes. I am not really a fan of ice-cream, so I just have a latte over ice. (Which would taste a hell of a lot better if we had Half and Half in this country!)

Taping down cannula sites – only ever necessary in the hot weather – becomes the norm, and CGM sites get taped down as soon as the sensor goes in, not as the tape starts to wilt.

Afternoon naps under nothing more than a sheet with a gentle fan on help with the fatigue and makes up for sleep lost overnight.

And when all else fails, it’s tools down for ten minutes – which is just enough time to eat a Frosty Fruit icy pole!

frosty

Games

December 16, 2015 in Reblog | 1 comment

The work year is coming to a close (yay!), and with only a couple of days left in the office and all my spare time stressing about my lack of Xmas prep, I am revisiting some old posts.

And because I am looking at ways to continue my procrastination, today, I’m looking back to December 2012 and a game involving the alphabet. Have fun!

Click on pic for link.

You’re welcome. (Also, I’m sorry…)

December 14, 2015 in Diabetes, Language | Leave a comment

Eleven days out from Xmas and I have done hardly any gift shopping. I managed to get online and do a few things the other day, and then spent the rest of the week patting myself on the back and not doing anything more. So, as it stands there are two presents wrapped under our tree, two things in transit….and a list as long as my arm of gifts still to buy.

But! I have found something so special for any of you reading this. (To be honest, it was handed to me from a work colleague, so I can’t even take credit for being thoughtful and finding it myself.)

So, enjoy! Or don’t.

(To make up for that, listen to this.)

Kids in the mix

December 11, 2015 in Conferences, Family, Guilt | 2 comments

I tried to hide my diabetes from our kid for a long time. I didn’t want her involved in any way; I didn’t want her to know about it and I certainly didn’t want her to see it.

But as her inquisitive little mind grew and she started asking questions – lots and lots of questions – it became harder to hide things from home. I became an expert at deflecting. If she asked ‘What is it like to have diabetes?’ I would suggest we took a walk. When she asked if she would get diabetes, I would struggle to breathe and, instead of answering her question, would offer to read her a story.

The kidlet went to school the day before WDD this year with her hope in her heart and on her hand, set to do some awareness raising of her own.

Unfortunately, the kid is smarter than me and she found new ways to get the answers that she was looking for.

These days, I try to shield her from the truly nasty sides of diabetes (even though my nasty is comparatively quite mild) and I certainly still hide from her any fears I have. But as an eleven year old, she has an extraordinarily sensitive understanding of diabetes and she has become quite the little advocate.

All of this was playing on my mind last week as I say down to hear a presentation from Kara Maliszewski whose mum has type 1 diabetes. In the abstract to her talk, Kara says her ‘normal’ was ‘…needles in the kitchen, candies and blood sugar monitoring equipment in the handbag, insulin in the refrigerator, pump infusions in the bathroom and the constant voice in my head “insulin to treat a high, sugar to treat a low”’.

Kara spoke about how from a very young age she was involved in her mum’s diabetes care. She was taught to give her mum a spoonful of jam or a glass of juice. I am not sure what Kara meant by ‘very young age’ but it did appear from her talk that Kara’s involvement was significant from when she was very small. I felt uncomfortable about this, thinking back to my own experience of trying to protect the kidlet from all things diabetes. It is only in the last year or two I have asked her to get me a juice box from the fridge if I am really low. Even though her understanding of diabetes is excellent, I have been resolute about not giving her a part in it. Why? Because I don’t want to concern her.

But Kara said several times that her contribution to her mum’s diabetes care actually lessened the fear rather than added to it. This was at odds to my thinking – I have had the idea that by not showing the kidlet the nasty things that she simply wouldn’t know they were even there – there would be nothing for her to be afraid about.

Clearly the effects of understanding and being part of her mother’s diabetes are significantly more far reaching than just knowing what to do in the case of low blood sugar. In fact, as this tweet from Kelly Close shows, Kara believes that her contribution to her mother’s diabetes care has impacted in other ways.

Kellyclose

Her thoughts at the #IWishPeopleKnewThatDiabetes stand at FFL this year.

The kidlet’s thoughts at the #IWishPeopleKnewThat Diabetes stand at FFL this year.

I see that in our girl. She is unusually considerate of others and has a very open-minded approach to most things. She despises unfairness or discrimination of any kind and is always willing and ready to fight for a cause she views as important. She is drawn to the plight of the underdog.

I love this about her. Is it because she is living with a parent who is dealing with a chronic health condition? Is it that AND the work I do that has increased her awareness?

I don’t know. But I do know that I spent a lot of the long flight home thinking about my motives in trying to hide my diabetes from her. Clearly I am not doing it because I feel ashamed. I think, perhaps, the motivation is selfish. I try to alleviate the guilt I feel by bringing diabetes into our family by not sharing it with Aaron and our daughter. I try to own it and hide it and keep it to myself as much as I can, because inevitably there are times I can’t do that and they have to be part of it.

What is becoming more and more apparent as she gets older, (and what was clear in Kara’s talk), is that our kids actually want to be involved – and invited to help – in our diabetes care. These kids are magic in so many ways. How privileged am I to be able to call her my own?

This kid. How lucky are we?

The other half

December 10, 2015 in Conferences, Family | 2 comments

I have written before that the thing I hate most about diabetes is when it becomes the problem of other people, especially my family. I feel enormous guilt that diabetes is part of their lives, even though they are not the ones who were given the diagnosis. They don’t have a choice and yet they are involved and invested in this as I am.

So it was with great interest – and a little trepidation – that I added two sessions to my WDC schedule that were being presented by the partners of women living with type 1 diabetes. I knew that I would find them difficult. And I did.

Riva and Boudewijn

Boudewijn (Bou) Bertsch is the husband of HuffPost writer Riva Greenberg. I’ve read Riva for years and have always been interested in her insights, and so thrilled that she writes about diabetes in such a practical way on a site with such reach.

The take home messages for me from both these talks was that as much as we may want to own our diabetes and keep it to myself, our partners share the load. They have a role to play – and they do help make diabetes easier.

There were little snippets from both men about how they get involved in their wives’ diabetes. At one point, Bou held up a small jar of glucotabs saying ‘This is a way for ME to have some control and feel meaningful to Riva.‘ He carried them around in his pocket at all times. It reminded me of Aaron filling jelly bean jars around the house after we brought the newborn kidlet home from the hospital. The breastfeeding hypos were so debilitating that we had left little jars within reach of anywhere I may sit down to feed.

Asim and Sana

Asim Rasheed, husband of Sana Ajmal (former Vice-President of the YLD Program), shared similar sentiments. He also spoke about how in Pakistan women with diabetes are considered not worth marrying, which is heartbreaking.

But perhaps the most illuminating moment of the sessions given by partners was when Bou said ‘I don’t always need to make it better, or come up with another idea. I just need to be present.’ Those words rang so true. I understand the need our loved ones have to ‘fix’ our diabetes. But there’s no fixing this condition. There are measures of coping and living. And supporting.

Aaron has a way of showing that support and he probably doesn’t even realise it. He can’t fix my diabetes; he can’t talk down the high numbers or force up the low ones. But he has a way of acknowledging the overall crapiness of the situation. Two words – ‘Diabetes sucks’ – is all it takes to feel that I have someone championing me; someone riding along side. And that’s all I need.

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Renza and Aaron

I am sure that for him – just as for Bou and Asim – he would think it nothing. But heading out to replenish hypo supplies, leaving glasses of juice on the bedside table in case I wake up low or helping me with particularly nasty overnight lows all relieve me from some of my never-ending responsibility.

I can hide it as much as I would like; I can try to own it alone and not share it; I can claim that I am the fiercely independent woman I truly am. But all those things don’t matter. We do diabetes. We don’t have a choice.

Living with diabetes – keeping it real

December 9, 2015 in Conferences, Real life | 2 comments

There were many highlights at last week’s World Diabetes Congress, but perhaps most impressive for me was the Living with Diabetes stream which sat proudly and comfortably amongst more traditional streams such as Basic and Clinical Science, Education and Integrated Care, Global Challenges in Health, Public Health and Epidemiology and Diabetes in Indigenous Peoples.

Including a consumer stream can be a tokenistic effort. I have seen that at conferences both here in Australia and overseas. But in Vancouver, the stream was completely embedded into the program and included outstanding consumer representation (from not only people with diabetes, but their loved ones too), as well as input from healthcare professionals, researchers and clinicians.

There were some real high points in the stream and over the next few days I will be exploring some of them in detail, but here is an overview of some of the killer sessions I attended:

I sat in on two talks given by partners of women with diabetes. These were, in equal measure, beautiful and personally challenging for me to sit through.
The session given by an adult daughter of a woman with diabetes was also difficult for me, but it looked at diabetes in the family from a very different – and rarely considered – perspective.
Diabetes and the family dynamic was examined with sessions from parents and carers and two psychologists in a session I chaired that looked at how the age of diagnosis impacts someone with diabetes.
The sessions on advocacy provided much food for thought as I heard about diabetes in places where things are really tough. (And although I didn’t hear her speak, I did meet with the inspirational Elizabeth Rowley from Type 1 International who is an advocate in every sense of the word. She is one of the IDF Young Leaders and is an example of the potential of this YLD Program. You can read more about Elizabeth in this interview she recently gave over at Six Until Me.)
The light was shone – quite brightly – on diabetes organisations and how they can – and must – work more closely with people living with diabetes to ensure they are relevant. This was the focus of my talk and I will write about the soon.
The power of social media and the DOC was given great attention with talks from some heavy weights in the community. Cherise Shockley from DSMA recounted the story of #Simonpalooza to illustrate how the community saves lives and Bastian Hauck from DeDOC spoke about an incredible initiative in Germany on World Diabetes Day and
Peer support was also a focus with Ed Fisher from Peers for Progress speaking about the importance of peer support being included in national health policies and Jeff Hitchcock discussing the support offered by Children with Diabetes and Friends for Life.

(I’ll be writing lots more about each of these highlights over the next couple of weeks. Lots and lots more! Trying to get my head straight is proving to be a real challenge as it is completely and utterly full!)

The sessions in the Living with Diabetes stream were very well attended, and not just by the consumers at the conference. Several times, session chair, or the speakers themselves would ask for a show of hands to identify who was in the room. Diabetes educators were probably the most visible. It was terrific to have healthcare professional interest in this stream and I think that other conference organising committees could learn from WDC. While some conferences have a very clear remit as being aimed at HCPs, that doesn’t mean that consumers need to be removed from the conference. Teaming HCPs with PWD to illustrate certain issues is not only a great way to engage and involve consumers, but also bring home the ‘real life’, practical aspect of what is often being discussed at a very theoretical level. It makes it real.

Congratulations to Gordon Bunyon, Chair of the Living with Diabetes stream and his committee for pulling together such a fabulous program. I was honoured to be part of it.

GordonWDC

A thousand words

December 8, 2015 in Conferences, DOC | 2 comments

I’m back from one of the busiest and most enjoyable conferences I have ever attended. The International Diabetes Federation’s World Diabetes Congress in Vancouver was a frantic few days, preceded by the Parliamentarians for Diabetes Global Network Forum. Before I get to the nitty gritty of the week, here are some pictures. They tell more than a thousand words and give you an idea of just some of the week. Let your fingers do the scrolling!

Obligatory ‘Outside the conference centre’ photo. I have quite a collection!

Banting. The man to whom I owe my life.

Spending time with inspirational women is one of the perks of this job. Sue Alberti at the joint PDSG and Young Leaders lunch.

My talk abstract.

And getting ready to take the stage…

And actually on the stage!

Slightly blurry, unfortunately, but this great slide was from Professor Jane Speight (ACBRD) in one of her excellent presentations about hypoglycaemia.

Because I’m a smart arse. (Also – ridiculous policy!)

I also had the chance to catch up with friends and other diabetes advocates and activists from around the globe.

These girls! Annie (@understudypancreas) and Kerri (@sixuntilme) make being away from my family just that little bit easier.

Outgoing president of the YLD program, Keegan Hall. He’s my partner in sarcasm!

Annie giving an incredibly eloquent and moving presentation about diabetes in her family, sharing her daughter’s story.

Cherise talking about DSMA and the amazing story that is #Simonpalooza. (Google it!)

Fun folks.

Bastian from #DeDEC speaking about a brilliant initiative he ran in Germany on WDD this year.

Dinner on the last night with Fredrik and Kyle from mySugr, and Bastian from DEDOC

Lots of things to write about in the coming days so stay tuned. It was a terrific conference. But I am so happy to be home!

Why we need to get political

December 1, 2015 in Conferences | 2 comments

I arrived in Vancouver at about 2pm on Saturday and by 4pm, I had taken my seat in the Morris J Wosk Centre for Dialogue, surrounded by members of parliaments from all around the globe. It was the second Parliamentary Champions Forum, an initiative of the IDF which involves 155 MPs across 42 countries.

Throughout the three days, we heard about the global diabetes situation. The numbers are terrifying; it is overwhelming. As I sat there, I realised the numbers stopped meaning anything to me. Hearing statistics of the millions of people affected, the billions of dollars being spent just washed over me. I stopped gasping involuntarily when I heard the numbers of people diagnosed with diabetes-related reacting to what I heard.

But I was jolted back to reality when the individual country reports started. Because suddenly, it stopped being about numbers and it became about individuals. Thankfully, this was repeated throughout the three day Forum.

At the welcome dinner on the first night, the inspirational Dr Susan Alberti from Australia spoke about her personal story. On the second day, over lunch, we heard the stories of some of the IDF Young Leaders in Diabetes. We heard stories of discrimination and stigma and lack of access to necessary medication and healthcare. We heard about how diabetes impacts individuals mental health and affects their wellbeing.

And this is why we need to bring politicians and MPs into the diabetes discussion. Of course we need policy change. Of course we need our elected officials to understand the magnitude of diabetes.

But equally, we need them to understand how it affects individuals. We need them to hear about day-to-day life with diabetes and how their decisions to cut healthcare spending, or not fund medications and technology actually make a difference – a significant difference – to how well we live.

I live tweeted throughout the Forum. Catch up at #IDFPDGN

Final hurrah

November 27, 2015 in Conferences, Travel | 2 comments

The last big diabetes conference of the year kicks off next week in Vancouver, and tomorrow, I head over there.

I’ll be popping in and out of here over the week, but Twitter is really where it’s at, so follow along on #WDC2015. I’ll be live tweeting sessions – and everything else that catches my eye! Not on Twitter? You don’t need to be to follow along, but if you want to get involved in the conversations and ask questions, you will need to sign up. (It only takes a few minutes.)

The World Diabetes Comgress always has great consumer representation and you can see from the program – especially the Living with a Diabetes stream – that there are some DOC usual suspects/frequent flyers presenting some great stuff.

As always, it’s a last minute rush to get myself ready, and spend precious time with my precious clan from whom I have been away far too much this year. (And I pledge that once I return from this trip I’ll to do my very best to not see the inside of another aeroplane until February!)