Eleven Years of connectivity

Shoes, glorious shoes!

It’s my pump-iversary. For eleven years I have been connected to a little machine that delivers insulin so that I can…well, live. Live well. It’s been all over the world with me, in the delivery room as my daughter came into the world, and witnessed other important moments in my life. Admittedly, the pump sitting discreetly in my bra today is not the same one that I met eleven years ago, but I still feel I should celebrate this milestone in some way.

For the first three years I used a pump, there was no NDSS subsidy.  Each and every month I had to find $300 to pay for the consumables.  I called it my shoe money because for those three years my shoe collection barely grew.  And in those three years each line change cost me over $20. This translated to three years of leaving in the cannula until the last possible moment, often leaving behind a nasty, angry, red sore.

I spent a lot of time and energy writing letters to my local, state and federal members of parliament, desperately trying to explain the need for pump consumables to be more affordable.  Whilst I was able to scrimp and save to ensure that I could continue to use the device that I believed had changed my diabetes life, I knew of many others who could not.

The inequality of the system angered me and I had many meetings with people I hoped could make a change. One of the people I met was now-PM Julia Gillard. For half an hour, she listened as a group of us explained why insulin pump therapy should be more accessible and affordable for more people living with type 1 diabetes. I know many others who also requested meetings with politicians to plead our case.

And then, in May 2004 then-treasurer Peter Costello handed down a budget that provided subsidies for people with type 1 diabetes using a pump who met certain criteria.

I celebrated by going out and buying a pair of boots with the money I’d saved for the next month’s supplies.

There are still a lot of things about diabetes care that make me angry.  There is still inequality in the system and there are still some people who can access some treatments more readily than others.  Often, money is the reason.

The next battle line, surely, is accessibility to continuous glucose monitoring (CGM) technology. Currently, sensors cost $75 each and need to be changed every 6 days. Do the math and you’ll see that adds up to over $4,500 per year for consumables alone. The hardware device adds another $1,200 to the cost.

How many of us have a spare $5,700 lying around? That’s a lot of boots. A. Lot.

So for me it’s time to but my lobbying hat back on. The fatigue I felt after years of writing and meetings about pump consumables has now passed. But it was so worth it. I can’t imagine my diabetes self-management without the use of an insulin pump. And I know how much better things are for me when I am using CGM. I have more information and with that can make more informed decisions about my diabetes management.

But for today, after eleven years of being in love with a little beeping, vibrating (!) machine, I AM going to celebrate. Perhaps a nice pair of sling backs or (and?)  Cuban-heeled boots will do the trick!

Renza Scibilia is the Manager of Type 1 Diabetes and Community Programs at DA–Vic. She has lived with type 1 diabetes since 1998. The opinions and thoughts expressed in her occasional blogs are her own.

You can follow Renza on Twitter @RenzaS

The DA–Vic Blogger Search

It’s blogger search time at Diabetes Australia – Vic! Just like on Australian Idol, you need to show us what you’re made of. But unlike Mark Holden, Marcia Hines and Ian Dickson, we’re not here to judge you, we just want to get to know you.

Now, we can already hear your cries for Renza’s blogs but never fear, they’ll still appear occasionally here at DA–Vic Blog central. But since Renza has spread her wings and flown the nest with her very own blog – Diabetogenic, we’re searching for some awesome new bloggers.

Send an email to blog@diabetesvic.org.au, tell us what your story is and you could very well become the next DA–Vic Blogger Idol. Sorry, did we just take the Idol analogy too far?

So whether you’re an experienced writer, or a newbie. Whether you have type 1, type 2, gestational, pre or any other type of diabetes. Or not. We want to hear your voice, so get typing to blog@diabetesvic.org.au.

How I cured my diabetes

So, I’ve just returned from a six week holiday in New York City.  It was amazing and I loved every minute of it.

In addition to visiting galleries, eating cupcakes, listening to lots of jazz, eating, browsing the NY library (my favourite place in the city!), eating cupcakes, shopping, wandering through Central Park and eating cupcakes, I discovered a cure for diabetes.  So all up, it was a pretty successful holiday. And I ate cupcakes.

Being the caring sharing type (1) I’m giving you the secret for free. Here it is:

Move to New York.

Yep – that is what did it for me. And given the quantity (and frequency) of cupcake eating that occurred, I’m going to say that cupcakes – specifically red velvet cupcakes from Magnolia Bakery – seem to be vital to this cure too. (I could also suggest that spending a lot of time and money in Bloomingdale’s will aid the curing process, because, once again it featured strongly.)

Renza enjoying New York's cupcakes

OK – let me be serious for a minute and tell you what is really going on. I just spent six weeks where my days involved sleeping as much as I wanted, walking everywhere (at least four kilometres a day – usually more), doing what I wanted and surrounding myself with beautiful music and works of art.

I did not juggle a crazy-busy job, run around for and after a seven year old, make sure that said seven year old is fed, watered and clean, get myself to work at a reasonable time, spend time with my partner and ensure that I know what’s going on in the lives of other people near and dear to me.

And in there, I did eat a lot of cupcakes.

Of course I didn’t cure my diabetes. But what the six weeks showed me is that by stopping, stepping back and taking some time for myself, my diabetes behaves itself a lot better. Walking everywhere and the removal of stress from my life meant a considerable reduction in insulin, hypos, hypers and ‘I-hate-diabetes’ moments. Diabetes was a part of the day, as was getting my morning coffee, bagel and copy of The Times.

It wasn’t a pain in the backside that was stopping me from getting to a meeting on time. What’s that – insulin cartridge running low? Sure, I’ll just take those five minutes to refill. About to walk out the door? Those 45 seconds it takes to do a BGL check would not impact on getting anyone to school late.

It made me realise how I cut diabetes-corners all the time when I’m in my normal non-NYC life because apparently, the 45 seconds saved is necessary.

Of course, what I fail to realise is that the 45 seconds saved as I fly out the door will inevitably become 15 minutes an hour later when my BGL crashes and I need to stop to treat a low.
So, now that I have it all sorted out, I’m going to ask my endo for a new prescription to accompany my insulin. Six weeks in New York, please. I’ll need to get it filled quite frequently – probably six monthly – but surely the PBS will pay. Hey – I’m using less insulin, so surely it will all balance out.

Renza Scibilia is the Manager of Type 1 Diabetes and Community Programs at DA–Vic. She has lived with type 1 diabetes since 1998. The opinions and thoughts expressed in her occasional blogs are her own.

You can follow Renza on Twitter @RenzaS

Leaving on a jet plane…

From this weekend, I’ll be in Dubai for the International Diabetes Federation World Diabetes Congress (blogs to come and follow @RenzaS for tweets) and once I return, I have a day to do the exciting washing, unpacking, getting over jetlag thing only to then board a plane to New York for a six week holiday, a (hopefully) white Christmas and more boot and shoe shopping than should be legal.

I’m not telling you this to sound like I have a ridiculously faaaabulous life. (Seriously, I don’t!)  It’s more that I need to keep saying it aloud and writing it down so I realise that I really, really NEED TO GET MY BACKSIDE INTO GEAR AND START GETTING ORGANISED. Deep breath!

I hate being in transit. Last year on a return flight from NY, I nearly threw a tantrum on the LA to Melbourne leg of the looooong journey. It all started off well enough: middle of the night flight, the then-five-year-old exhausted so fell asleep as soon as we boarded as did I. We managed six solid hours sleep at which point I woke up. And realised that we still had nine hours on the plane before we landed in Melbourne. Nine hours. The words ‘How is it possible we live so far away from everything. We are never going to get home. I am never going further than our front door again. I. Want. To. Get. Off. This. Plane. Now.’ were all uttered.  Cue strange looks from people around us.

So, I’ve been in denial about the upcoming trips, because I don’t want to think about the horrific boredom of sitting around airports, sitting in aeroplanes or dragging luggage around. (Yes, I know, first world problems.) And the denial has led to doing practically nothing to get myself organised.

Here is what I have done to plan for my upcoming trips:

Dubai – I’ve found out where to get good coffee. (I actually squealed with delight when I found out the Brunetti’s has an outpost in the Dubai Mall!)

New York – I’ve found my list from last year of where to get good coffee.

Nothing else. Not a thing!

Of course, in true making-everything-that-little-more-stressful character, there’s the diabetes angle. So where I used to be the sort of traveller who would throw a pair of jeans, a couple of pairs of shoes, a couple of tops and a toothbrush in a suitcase, now I need to plan with the precision of a military campaign.

Of course, I haven’t.

Here is what I haven’t done:

• Checked that I have enough insulin to last me seven weeks. And when I say seven weeks, I actually mean more like ten to account for any spillages, possible increases to insulin dose (AKA Christmas) etc.
• Checked that I have enough pump supplies and BGL strips for seven (or ten) weeks.
• Checked that I still have my letter from my endo that says “This person has diabetes. No, you can’t take her insulin pump away from her.”
• Sifted through the diabetes supply cupboard at home (yes, this is a real thing!) and find a spare meter that works – and corresponding, in date strips.
• Bought some blood ketone strips for my existing meter.
• Thought about what to take with me on the flights to deal with the inevitable hypos (from lack of decent carb-containing foods) and the inevitable hypers (because I am so damn stressed to be in transit).
• Ordered some sensors so I can wear a CGM whilst in transit to alarm every time I am heading for an inevitable low or high (and annoy anyone within earshot with the beeping).
• Organised my loan pump from the lovely people at Medtronic who kindly provide a ‘traveler’s pump’.
• Remember how to use long acting insulin in case that my pump and the loan pump both combust.
• Actually have some long acting insulin.
• Buy some needles to give myself said long acting insulin (and short acting) in case of pump combustion.
• Locate my Frio pack which will keep my insulin (once I get around to organising it) cool whilst in transit.
• Sign travel insurance papers.

Clearly, I have a lot to do between now and boarding. Also, please note the above list only has diabetes-related planning. The regular-this-is-what-people-without-diabetes do list hasn’t even been considered.

But, I now have a list!  And that’s a starting point. And hey, the silver lining is that if I ‘forget’ to pack enough clothes/shoes/makeup/scarves/boots etc, well, I’ll be in two shopping capitals. And that makes me feel a whole lot less stressed!

Renza Scibilia is the Manager of Type 1 Diabetes and Community Programs at DA–Vic. She has lived with type 1 diabetes since 1998. The opinions and thoughts expressed in her occasional blogs are her own.

You can follow Renza’s International Diabetes Federation World Diabetes Congress Adventure via Twitter @RenzaS

Hope

Today is my favourite day of the work year. It’s the Kellion Victory Medal award celebrations where we acknowledge people who have lived with diabetes for 50, 60 and even 70 years. Just stop for a minute and think about that. Seventy years with type 1 diabetes. Now think about what diabetes was like back in 1940: urine was boiled, needles were sharpened. Home blood glucose testing was still about forty years away, modern insulins hadn’t been considered. Insulin pumps, of course, were things of the future.

When I started working at Diabetes Australia – Vic, I had lived with diabetes for just under four years and in that time I hadn’t met anyone else with type 1. I was still getting used to the new reality that had opened up the day I was told that I had type 1 diabetes. My 27 year-old self had re-written my future, and instead of the life I had imagined, I had reshaped that into one that involved terrifying diabetes complications, probably no children and a life expectancy significantly reduced. I pictured myself infirm and unable to take care of myself at a time in my life where I wanted to be travelling and seeing the world. And I saw a life where my still-new husband would have the burden that is a wife with diabetes.

This is the picture of diabetes that had been presented to me in the four years since diagnosis. Time after time, the health professionals I saw delivered news of doom and gloom. And inevitability. Hope was not discussed. Except, strangely, the promise of a cure in five years – although I could tell that even the medicos telling me this didn’t believe it. I felt devoid of hope. Hopeless.

And then I was invited to the Kellion Medal ceremony. I can still remember clearly my apprehension about attending the awards, but I went along to Parliament House to see what it was all about.

It was the best thing I could have done. It wasn’t about living with diabetes for 50 or 60 years. It was about LIVING. I heard tales of travels, raising families, working. Stories of being pioneers to make sure people with diabetes were not discriminated against. I heard stories of hope.

Kellion medallists are inspirational in every way. Each year I walk away from the awards ceremony with an ‘injection’ of motivation and determination. And a booster shot of hope.

We have a duty to be honest to people newly diagnosed with type 1 diabetes. Promising a life that is full of puppy dogs and bowls of cherries does not accurately paint the picture of what life with diabetes is all about. But neither does scaring people senseless. When people are in that initial fog, where they can’t see beyond the end of the week and they are starting to rewrite their future, that is when they need stories. The positive ones. The stories of hope.

If I could find a way for every person newly diagnosed with diabetes; for every parent of a child newly diagnosed; every partner, loved one, sister, brother of someone newly diagnosed with diabetes to attend the Kellion Medal awards, I would.

There is no promise of a cure, no threat of nasty complications, no dread of being a burden. But there is laughing and sharing and amusing stories. And hope. To meet a Kellion Medallist leaves people feeling one way: filled with hope.

Renza Scibilia is the Manager of Type 1 Diabetes and Community Programs at DA–Vic. She has lived with type 1 diabetes since 1998. The opinions and thoughts expressed in her occasional blogs are her own.

You can follow Renza on Twitter @RenzaS

It’s Guest Blog Friday!

 

Welcome to Australia. First impressions from a jet lagged family dozing in front of the TV!

My kids are au fait with new slogans: make sure you have life insurance; enough money to pay for your funeral; paint your exterior wood with a particular brand of paint; and get your kids to the table as there’s plenty of junk food here to keep them busy for a few weeks.

We’ve just moved from the UK and our first TV culture shock was the frequency of advert breaks in Australia and how the same ads are repeated ad nauseam. Family movies have felt like a marathon.  They are continually interrupted by ad breaks and we felt bombarded with ads for unhealthy products, sometimes the same ad runs at every break throughout the entire movie!

The second shock is that there appears to be no rules as to what can be advertised and when.  Sugary snacks and junk food are shown during the programs we watch as a family – no problem.

The frequency of junk food advertising is a real surprise, as we always believed Australia promotes itself as a country that loves its food and is proud of its quality meat, fruit and vegetables. From watching TV, it looks like Australia has forgotten about the diet of its children.

I don’t want to appear like a member of the food police! I believe I’m responsible for what my kids eat. However, I also think  advertising here is stuck in a time warp – ‘brand power’ and ‘what’s new’ are of particular amusement to kids raised on the UK codes of advertising. Australia’s old fashioned advertising plays into the hands of the big boys. The multinationals’ ads also stand out to my kids, they know their demographic inside out and they obviously have the budget to make their ads appeal directly to children.

Moving on from television, how about the internet, children’s magazines and direct marketing?

Surely it is time to take a new look at the Australian advertising industry. Please, please bring in proper regulation codes to monitor timing and type of advertising, so unhealthy food isn’t being advertised during the times of day my family and I sit down to watch TV. Like it or loathe it, a fact of life is that most kids do watch TV at some time of the day and from what I’ve seen while here, they will be subject to a major advertising onslaught every 5 minutes or more. Is this really necessary in Australia?

That’s why I’m interested in the work of The Parent’s Jury and in particular Their Fame and Shame Awards, highlighting the subject of food marketing to children.

The Parents’ Jury is an online forum of 5,000 parents, grandparents and carers who want to see change in the food and physical activity environments of Australian children.  They advocate for healthier schools, healthy checkouts, active and friendly communities and a reduction in the level of food marketing to children.

Each year, The Parents’ Jury run the Fame and Shame Awards, giving parents the chance to have their say on food marketing techniques targeting children.

For your chance to win a copy of Wendy Blume’s great kids cookbook Vegie Smugglers, join us and complete our voting form. It takes less than 3 minutes to complete and is a real chance to use your voice.

Voting ends 31 October. Look out for the results next month!

Angela Mallon and her family are natives from Northern Ireland, recently relocated to Melbourne. Angela works with The Parents Jury. The opinions and thoughts expressed in this blog are her own.

Getting blue for diabetes

Those of us in the diabetes world living in Australia probably know that 14 November is World Diabetes Day. This year marks the twentieth World Diabetes Day, a campaign led by the International Diabetes Federation.

In 2007, World Diabetes Day became an official United Nations Day – diabetes being only the second medical condition to be recognised in this way.

Over the next month you’ll hear and read about what’s going on here in Melbourne and more broadly in Australia. But make sure you also tune into what’s going on globally.   In the US, the whole of November is Diabetes Awareness Month. And as such there are a lot of exciting things happening to raise awareness and advocate for people living with diabetes and their families, and also to promote the importance of type 2 diabetes prevention.

One of the exciting initiatives this year is the Blue Fridays campaign which is being run by Diabetes Social Media Advocacy (DSMA). I was so pleased when Cherise from DSMA asked me to be part of the campaign. Cherise contacted people from around the globe and asked them to say why they would be wearing blue on Fridays in November. You can see the result here:

Diabetes advocacy can come in many shapes and sizes and it’s terrific that there are global efforts run by consumer groups.  People living with diabetes advocate in a very different way to a diabetes organisation – because it’s personal. Diabetes organisations are critically important at working with government to assist with policy change and provide activities, programs and services for people living with diabetes; I love working at Diabetes Australia – Vic where I get to be part of this.

But get a group of PWD together and ask them to tell their story and WOW! That’s when you get the idea of what living with this condition is actually all about.  It’s but another reason that our support groups are so important. Sharing stories – and hearing stories – from others gives hope, provides inspiration and makes us feel like we are part of something.

So – on Fridays throughout November, wear blue. And make sure you tell people why you’re doing it. It’s an excuse to do some serious advocacy and myth busting. And it’s a way to feel part of a global movement.

Renza Scibilia is the Manager of Type 1 Diabetes and Community Programs at DA–Vic. She has lived with type 1 diabetes since 1998. The opinions and thoughts expressed in her occasional blogs are her own.

You can follow Renza on Twitter @RenzaS and her blog Diabetogenic

DA–Vic is holding a number of events to mark WDD in 2011:

Friday 14 October – 10 November WDD 2011 Photo Competition. An open, creative photo competition. Get your circles on.

Sunday 13 November Family Fun Day DA–Vic is inviting children with type1 diabetes and their families to join us for an afternoon at the circus.

Sunday 13 November AAMI Park will be lit up in blue

Monday 14 November DA–Vic will join with Abbott Diabetes Care and invites everyone to celebrate World Diabetes Day at Federation Square at 6 pm to welcome the new Abbott Diabetes Care ambassador Cathy Freeman.

Thursday 17 November Diabetes Research – celebrating the journey DA–Vic will host a reception where the top line results for the groundbreaking ACBRD MILES survey will be released and the Diabetes Australia Research Trust grant winners will be announced.

Monday 21 November Kellion Victory Medal presentation ceremony. People who have lived 50, 60 and 70 years with diabetes will be honoured and their carers recognised at this event to be held at the Melbourne Town Hall.