Diabetogenic

Driving and diabetes – the sequal

January 25, 2013 in Advocacy, Awareness, Diabetes, Driving, Real life | 5 comments

Oh VicRoads, are you trying to destroy me? Really?

With all that has been going on with the issues surrounding the new driving and diabetes guidelines; with all the inconvenience you are causing for people who are living with diabetes each and every day – all the hoops you are making us jump through; all the bureaucracy you have built in for us to simply hold a drivers’ licence, wouldn’t it be nice that just for once you could be a little – just a little – accommodating?

And yet, when I jump through each and every hoop and call you to ask you for an extension on getting my eye review form in I am told no. An extension will not be granted because my medical review form (different to the eye review form) was one day late.

I am unsure as to why I have to submit an eye medical review – I’ve never had to do that before. My eyes have been stable for years. This was clearly documented on my medical review form.

The woman I spoke with at VicRoads told me that if they did not receive my report on time, I would be issued a letter the following day telling me my licence was suspended. However, according to her, I have a two week grace period in which I can still drive. So why not simply give me an extra week so that I can get the form in on time? I have made an appointment to see my ophthalmologist, but of course, could not get a time until the day after the report is due. (He’s away at the moment as is half of Australia ‘cause it’s – you know – Summer holidays).

My driving record speaks for itself as does my diabetes record. I know more about how safe it is for me to get behind the wheel of a car than most people. I check my BGL, I make sure I travel with food in case I go low, I wear a CGMS that alarms not only if I am low, but if my BGL is dropping too quickly so I can prevent a hypo.

And never before have I been late with a review.

So – here’s some advice for everyone after the trials and tribulations I have dealt with in the last few months with Vic Roads:

Regardless of when you have an appointment with your health professional to fill in your medical review form, call VicRoads the second you receive your letter requesting a review and tell them that you need an extension. There are dozens of reasons that this may actually occur – appointment is cancelled, doctor takes extra time to send the report, you don’t make it to the post office on time etc etc.
If you do not get the report in by the due date, you will receive a letter from VicRoads warning you of the suspension which will take effect in two weeks. You cannot ask for an extension at this time; it’s too late. If you think you’ll need extra time, call BEFORE the due date of the original letter (usually 8 weeks from the date of the letter) and ask for the extension.
Remember that it takes time for the medical review team to process your review. So even if you do get it in on time, there could be a delay in you getting the ‘all clear’. Obviously, this isn’t a problem if you get it in way before the due date, but if you’re just sneaking it in on time, it could result in your licence being suspended. I actually took my last review form into VicRoads and asked to speak with someone from the medical review team and pretty much demanded that they approve it that day.
Off the top of your head, do you know the date your driver’s licence expires? No cheating – do you know? I had no idea and found out the hard way one morning when a police car pulled me over as I was driving to work. After they did a random number plate check and discovered my licence had expired I was fined $359. Great way to start the day! I had absolutely no idea my licence had expired and was 100 per cent certain I had not received a reminder letter from VicRoads (actually, being paranoid every time I get a letter from them, I was more than 100 per cent sure). I went straight down to VicRoads to renew my licence and asked if they had my correct details because I had not received a reminder about my licence. I was right – they had not issued a reminder because my licence had been suspended. Since November 2010. I nearly fainted. Long story short: apparently it was a clerical error with some smarty-pants at VicRoads indicating that I had not submitted my last review. Despite the fact that I had in my hand a letter saying it had been received and I was good to drive for two years before the next review. As I found out, reminders are not issued if your licence is suspended. (The fine was overturned, but it took a lot of time, letter writing, and sitting on the phone for this to happen!)

Having a licence is essential for many – most – of us, and whilst a pain, I completely understand why I need to have a medical review form filled in every couple of years.

But making things difficult for us only makes us angry at the process and the inconvenience of it all. Anecdotally, I’ve heard of people who simply don’t tell the licensing authorities about their diabetes to avoid the rigmarole involved in having a conditional licence. This is far more dangerous, in my opinion and puts these people at significant risk because of insurance and legal implications.

And this brings us back to the whole driving and diabetes issue and the development of the new guidelines. How is it possible for licensing authorities to have any idea of the actual process and how it impacts on people living with the condition if we are not consulted? Had Diabetes Australia been given a seat at the table when the new guidelines were being developed, this would have been considered. Had consumer reps been invited to take part, this would have been raised as a concern. It’s not good enough. Because this isn’t a simply list of guidelines on a page of a website. This is about our lives.

Obligatory photo of FIAT 500 that accompanies any driving posts. I may be a little obsessed. #dreamcar

Making me smile

January 23, 2013 in Uncategorized | 2 comments

On those days when diabetes plays nice:

and I see things that make me happy:

and deliveries to work come in multi-coloured hues with beautiful notes from loved ones:

and little girls get to stare out to sea:

I smile. Especially when the soundtrack to life is Dr John.

Year of the…..

January 15, 2013 in Uncategorized | 2 comments

Back at work today and I was greeted by this.

Yes, in a moment of madness at the end of last year, I thought it a good idea to buy myself a 2013 calendar featuring a daily cupcake recipe. With accompanying photo.

So although the Chinese calendar tells me that this is the Year of the Snake and the United Nations has announced 2013 as the International year of Water Cooperation and also the International Year of Quinoa, the little calendar sitting on my desk tells me that this is, in fact, the year of the cupcake.

Totally bolus-worthy. And yes – I can eat that!

Cupcakes at Magnolia Bakery NYC
January 2012

Bathers, beach and a bitchin’ low

January 9, 2013 in Devices, Diabetes, Hypo, Lows | 7 comments

Last week, on Melbourne’s 40 plus degrees (Celsius) day, I put on a pair of bathers and went to the beach. Big deal, I hear you all sigh. But it is! I can’t remember the last time that I wore bathers. I’ve written about my body image issues before, but this year, I decided to bite the bullet, buy a gorgeous new pair of togs and wear them to the beach or pool.

So, in my new, stripy bathers, on the beach, I frolicked and splashed in the water with my family. It was gorgeous and the ideal way to cool down from the scorching weather which, at 9.00pm was still sitting around 36 degrees.

I was having a fantastic time and feeling more than a little proud of myself for not being self-conscious and just having fun. The kidlet was having a ball and couldn’t get enough of splashing her parents. Fun. Fun. Fun. And then I have no idea what happened. No idea at all.

The next thing I remember is sitting on the sand with my daughter next to me. She was building a sand castle and smiled at me. ‘Where’s daddy?’ I asked her. ‘He’s gone to the car to get jellybeans. He’ll be back soon.’ ‘Okay,’ I said. I watched her.

‘Where’s daddy?’ I asked her. ‘Mummy! I just told you. He went to the car. He’ll be back soon.’

At that point, Aaron returned with jellybeans. He looked so concerned. ‘I didn’t know if I was doing the right thing. It was so hard to get you out of the water, I thought there was no chance getting you to the car. You were talking to me, so I thought it best if I quickly go’. ‘I don’t remember getting out of the water,’ I said to Aaron. Apparently I walked, but it took some time for me to agree to get back on the sand.

How this happened, I have no idea. I made the decision before I left home to leave my new pump on the kitchen table and pack a syringe and insulin with me for bolus top ups as necessary or if we decided to get an ice-cream. Before I disconnected my pump, the Dexcom was reading (on my pump) 8.2mmol/l with a nice flat arrow and a flat line preceding it. We’d eaten a low-carb meal, so there was only 0.6 units of insulin on board. I figured that I’d check my BGL when we got to the beach to see if I needed to top up. But I forgot to do that.

Most likely, it was a combination of the heat and the activity in the water (but let’s be honest; I was standing there splashing, not swimming against a current) or doing anything that would warrant the 1.5 mmol/l reading I discovered when I finally checked my sugar after downing a bag of jellybeans in record time.

These hypos make me hate diabetes like nothing else. And they make me hate myself for not doing the things that may have helped me avoid the situation. If only I’d checked my BGL before getting out of the car I would have known that I was dropping and dropping fast. If only I hadn’t left my pump at home, the Dexcom would have picked up my plummeting BGL and warned me. If only I’d packed jellybeans in the beach bag. If only my body did what it was meant to. If only I didn’t have diabetes. If only.

I wonder if my body image issues have anything to do with the fact that I feel like my body fails me constantly. Why would I think of my body as anything other than broken and why would I want to show that to anyone? Is that part of it, or is it just a matter of me being plain shallow, needing to get over it?

There will be many more beach days before now and the end of the sweltering season – a heat wave is on its way. I pushed away the thoughts of never putting on my new bathers again and not going to the beach again with my family. I can’t let diabetes dictate what I do. But I guess I must let it dictate how I do it. If only I’d remembered that before I walked onto the sand last week.

As good as a holiday

January 2, 2013 in Devices, Diabetes, Real life | 5 comments

It’s early evening and a light breeze is coming in through the open window in our study making the sheer curtain flap gently. The occasional car drives by, birds are chirping (plotting against me) and I can hear kids playing in the streets. And there goes the gelati van that does its round about this time each night.

Yep – it’s holidays. I still have a couple of weeks before I return to work. This has always been my favourite time of the year when I’m not working. The craziness of Christmas and New Year is over; the streets are pretty empty as a lot of people are still away. The weather is gorgeous and I have nothing – absolutely nothing – on my calendar. I can’t remember the last time I was spending early January like this. We are often overseas at this time and miss out on the January shutdown. Or I return to work as soon as the New Year’s fireworks are finished.

My holiday is going to get exciting tomorrow when I start on a new pump and CGMS system. I am taking part in a trial of the new-to-Australia Animas Vibe/Dexcom system. I’m more than a little excited because, as mentioned before, I love new gadgets. Also, I had a lot of opportunities to speak with people using this system when I was in Berlin at the European Diabetes Bloggers Summit. Many from the Italian contingent were using it and had very positive things to say.

Apparently, a change is as good as a holiday. Given that I am on holidays I guess this means the next two weeks will be extra holiday-y (totally not even close to a real word). Having the time to actually get to know how the new system works, its quirks and tricks is a real luxury and I’m looking forward to seeing how different it is to the terrific system I’m already using. Also, it means another player on the Australian market, which means more choice for people with diabetes. This is a huge win for consumers as far as I’m concerned.

For those of you on holidays – enjoy and make the most of it. I know that I certainly am!

DISCLAIMER

The trial is funded by AMSL – distributors of the Animas pump and the Dexcom CGMS in Australia. The pump and CGM are being loaned to me whist on the trial and I am being provided with some consumables for the pump and 2 months of consumables for the Dexcom. I am not receiving any payment for taking part in the trial. There is no arrangement for me to write about my experiences using this system, although I probably will. ‘Cause it’s how I roll.

So this is Christmas

December 28, 2012 in Diabetes, Uncategorized | 5 comments

Merry Christmas!

Christmas for me is an excuse to do lots of things I love: eat, shop for gifts for loved ones, cook, eat, catch up with family I don’t see anywhere near enough, eat, watch my mum make zippoli*, eat said zippoli, laugh (mostly at my sister’s sense of humour), receive gifts and, of course, eat.

This year, I got to do all of these things over two days of festivities. Coming from a big Italian family means our celebrations are split into Christmas Eve and Christmas Day evening. And we have lunch with my husband’s family. I can eat for Australia over the Christmas period.

Diabetes has no place in these celebrations. I check my BGLs more frequently perhaps because I spend the whole day grazing and need to do quite a few extra little boluses with my pump. But apart from that, I don’t even think about the fact that my pancreas is a lazy, good-for-nothing organ that couldn’t remember how much insulin to send out for the second piece of tiramisu** I’ve just scoffed. Good thing that I do. And that my pump isn’t on strike for having to work overtime on a public holiday.

I love that my family and friends know that this is my attitude towards diabetes at Christmas. I can’t remember the last time someone asked ‘should you be eating that?’ (It’s possible I maimed the last person who asked and everyone else learnt from that.)

For me, Christmas is about the good stuff. And diabetes just has to fit in. Happy festive season to you all!

*Zippoli (or zepolli) are Italian doughnuts and my favourite things to eat at Christmas. Here’s a recipe for you make your own.

**And here’s the recipe for the tiramisu which was my contribution to our Christmas feast(s). You’re welcome!

Alphabet City

December 13, 2012 in Awareness, cupcakes, Diabetes, DOC | 6 comments

Last night my husband and I were out to dinner when he said “Let’s play a game. It will test our Beatles knowledge. We need to come up with a Beatles song for every letter of the alphabet.”

Really, he’s just a show-off smarty-pants and knew that there was no way that I could out-play him when it comes to the Beatles – Blue Jay Way? Really? Who even knows that’s a Beatles song?

So today, I thought I’d play a diabetes alphabet game. We had our end of year team lunch, so I had a group of incredibly bright women to help out. The way it worked was I said the letter and whoever came up with the first thing beginning with that letter won (with a few edits from me). Here we go:

A – ‘All the time’!

B – BGLs (close second to ‘Bugger’ with thanks to Kim)

C – Complications (and constant.)

D – Diabetes

E – Eyesight

F – Fuck! (Snap! Kim and I said it at exactly the same time!)

G – Glucose

H – Hypo / High (it was a tie. Special mention to Jane’s ‘HI’ from friendly meters when we’re reeeeaaaallllly high)

I – Insulin

J – Jelly beans

K – Ketones

L – Lucozade (Kim again!)

M – Mellitus (followed by a discussion on how it’s pronounced. Is it Mel-it-us or Mel-eye-tus??)

N – Normal (given that at the time of doing this there were more pancreatically-challenged people involved, we decided that our ‘normal’ is those with type 1 diabetes!)

O – Ophthalmologist

P – Pee stick (with pump as the runner-up)

Q – Quick-acting

R – Retinopathy

S – Slow-acting

T – Tablets

U – Undiagnosed

V – Veins

W – Wonderful people (with a shout out to the DOC)

X – X-tra sexy (with a shout out to the DOC)

Y – You’re in control!

Z – Zzzzzzzz (‘cause it’s boring. And I really want a good night’s sleep uninterrupted by either high or low sugars as has been the case every night this week.)

I suspect that everytime the game is played, the words would change. (Case in point: how was C not cupcakes? I’m shattered!) But it was a fun way to spend 15 minutes. I wonder if our ‘diabetes state of mind’ could be analysed by the words we come up when playing this game. I know that on those days where diabetes is misbehaving, most words would be negative. But when diabetes (very) occasionally plays nice, perhaps cupcakes would be the first thing we think of when the letter C is called.

And hey – next time Aaron suggests we play the Beatles alphabet game, I’ve got A sorted. I’m calling Ain’t She Sweet.

Okay – it’s over to you now. What words would you come up with?

Sisters

December 10, 2012 in Uncategorized | 1 comment

I missed writing for Sib of a D-Kid Day a couple of weeks ago. Also, given that I was diagnosed as an adult, I don’t think that I really fit the profile of why the day was conceived. But having an adult sibling diagnosed with a life-long health condition and fitting that into the family dynamic does invite some discussion, I think. How does one sibling suddenly being told they have diabetes impact on other kids, albeit grown up kids, in a family?

I have one sister, Tonya. She’s a couple of years younger than me and is possibly the smartest person I’ve ever known. She’s gorgeous, sassy and caring. She also has a sense of humour on her that can have me in stiches for hours at a time. And, you don’t want to be on the receiving side of her wit – it’s scathing!

She thinks I am extraordinarily bossy (‘Try this on’, ‘Buy that’) and I think she is too. We are very different, but also very much the same about things. I pity any fool who gets on her wrong side.

Even though I am older, Tonya has a feeling of protectiveness about me that is especially prominent when she feels someone has done something to hurt me. And when it comes to me having diabetes.

Lucky for her, she has managed to avoid the dodgy autoimmune issues that plague our mum and me. This makes me feel incredibly glad and like I want to pinch her. Which I wouldn’t do, because I’m a little scared of her at times.

And I think that at times, she may be a little scared of the fact that I have diabetes. She’s never said that to me, but it’s just a general feeling I have.

One night we were having dinner at Marios – a favourite haunt – when I made some throw away comment about her living longer than me because diabetes would shorten my life by 15 years. That was very much the thinking at the time and my comment wasn’t meant to harm in any way. ‘Don’t say that’, she said with a slightly raised voice and her eyes started to fill with tears.

When I have been going through a difficult time of living with diabetes she is incredible. She rallies the troops, puts on her bossy boots and calls me to say things like ‘Right, so I’ve organised dad to sit with the kidlet if Aaron is at a gig so you and I can go for a walk three times a week. OK?’ or ‘I think you need to see your endo. Can you make an appointment tomorrow?’ This is followed up with daily phone calls, text messages, emails, sky-writing messages asking if I have, in fact, made that appointment. If this came from anyone else, I’d want to kill them. But from Tonya, whilst at times annoying, I know it is because this is her way of doing something for me and my diabetes. She may not be able to say ‘I know what you’re going through’, but her actions say ‘I’m here to help’.

She has had to deal with parents who now consider their daughters different to each other in some ways. She knows that they too fear how diabetes will play out in my life and she knows that there have been times that I have really needed them which has meant they probably weren’t there as much for her.

What she really thinks about having a sister, her only sibling, with diabetes is a mystery to me – we’ve never discussed it. But her support and encouragement and bossy ways tell me that she cares. I don’t think there is anything more that I could wish for.

Torn

December 5, 2012 in Advocacy, Awareness, Diabetes, Real life | 8 comments

I get annoyed when articles about diabetes get it all wrong. I would have thought that fact-checking is a pretty standard practise by journalists, but I’m finding that in many cases, this isn’t the case. Where it’s less clear is when someone is writing the facts correctly, but the overall sentiment doesn’t sit right. I guess that it is going to be up to the individual as to how they interpret the writing, but there are many occasions where most of the facts are right, but I feel it’s still all wrong.

On Sunday, the Age in Melbourne (and SMH in Sydney) ran a piece by national affairs writer Tony Wright. I generally like his writing and always try to read his pieces. So I was more than excited to see that he had written a piece about type 1 diabetes following JDRF’s Kids in the House (KITH) event at Parliament House.

I loved his introduction which set the scene of 100 kids sitting down to lunch with carbs listed; his description of the process of checking BGLs, guesstimating carb content of foods, insulin calculations and delivery was beautifully accurate. But there was some stuff in there that made me prickle. And I feel guilty and a little dirty for responding in this way. But I want to pull apart some of the comments I questioned and say how I would prefer they were reported.

Tony writes: ….daily reality for the 122,300 people in Australia diagnosed with diabetes type 1, also known as juvenile diabetes. Another six, most of them children, are diagnosed every day.

Renza says: Actually, type 1 diabetes is not also known as juvenile diabetes anymore and hasn’t been for some time. Just as it’s not known as insulin-dependent diabetes anymore. Why? Because type 1 diabetes can be diagnosed at any age. Also, we grow up! And using the term ‘juvenile’ means that people think it only affects kids and no one thinks about the support, information and healthcare needs of adults living with type 1 diabete

Tony writes:…..Type 1 really ought to have another name, for it is a more terrifying beast than the much more common diabetes type 2….

Renza says: Perhaps having different names for the condition is a good idea, although I’m far too tired to fight this battle and am sure that there are better battles to expend my energy on. However, it is perpetuating a myth by saying that type 1 is a harder condition to deal with. I don’t know about living with type 2 diabetes, but I would find it pretty terrifying if I was treated with diet or exercise or oral meds and my BGL meter gave me a reading of 22.1mmol/l and I didn’t have insulin to treat it and make me feel better . Which is my protocol as a person living with type 1 diabetes.

Playing the ‘mine-is-worse-than-yours’ game does nothing for anyone. And as Tony quoted in the previous paragraph, there are just over 120,000 with type 1 in Australia. How much attention do you think we’d get if sometimes we couldn’t ride on the coat-tails of the 900,000 people with type 2 diabetes? We’d get completely lost in an underfunded system and lose significant research dollars.

Tony writes:….Virtually all these people will come to conceal a secret: they fear going to sleep, afraid they will not wake up. Sometimes they do not.

Renza says: One person dying from a hypo from which they do not wake up is a tragedy and absolutely one too many. It is a terrifying and scary thought. But in all honesty, I wonder how many of us actually think ‘I hope I wake up in the morning’. I’ve spoken with several friends with diabetes who were diagnosed as kids and they say that this was never discussed when they were growing up. Today I see newspaper report after newspaper report with parents saying they are scared their kids will die overnight. Whilst in no way diminishing this fear, I wonder just what this constant reminder is doing for the kids. Do we want to instil such fear into them that as they lay themselves down to sleep they may not awake in the morning?

Kids in the House is a really important and valuable exercise to remind politicians about type 1 diabetes. Thrilled as we may be that Tony Abbott promised $35 million, we’ll need to see if he does in fact put his money where his far-too-big mouth is if a Coalition government is elected in 2013.

My only concern with any activity like this is that it packages up type 1 diabetes a little too neatly. It focuses solely on children and doesn’t address the support, information and education they will need as they grow older and become healthy adults; the focus is too cure-centric – of course that is the ultimate goal, but all our eggs in one basket will lead to so much disappointment.

But mostly, it allows our political leaders to say ‘we’ve done type 1 diabetes – we had KITH’. This cannot be a once a year, feel-good activity that ticks the type 1 diabetes box. The pressure needs to be maintained 12 months of the year.

Remember when….

December 3, 2012 in Uncategorized | 3 comments

Yesterday, Mia Freedman wrote a beautiful piece about grief and how people often don’t know how to deal with it. She also wrote about how we deal with grief as time passes and the tragic episode moves further and further into the past.

It got me thinking to diabetes. When I was diagnosed a lot of what I was told was pretty matter-of-fact. ‘You eat this, you check your sugars, you inject insulin’ and ‘If you don’t you’ll get this (insert graphic picture or graphic description of any complication)’. It was all very off-you-go-and-deal-with-it-now-you-have-the-facts.

There was no talk about how I might actually feel.

About three years after I was diagnosed, I developed some other short-term health problems that may or may not have had anything to do with diabetes. They did have quite a lot to do with physical pain and during this period, I learnt that I don’t handle constant pain very well. I spent 6 weeks in hospital as the source of the pain was identified and treated. Long story short – it was a really dark time for me.

My very clever endo, who had her hand in my care during this period, referred me to a psychiatrist. She said that she thought it would be a good idea for me to have someone to speak with. I remember the first time I saw him. I was still in hospital and in he walked. I was in bed doing one of the stupid exercises that was supposed to help me manage the pain, but really just annoyed me.

He sat down and we had a chat. He wanted to know about the pain and why I was feeling so low. We talked about how I’d managed to deal with a diagnosis of a life-long chronic health condition, yet was struggling to deal with something that was going to have an end-point even if at that moment I couldn’t think past the pain.

I started seeing him each week and it was after about a month that he said to me ‘you know, it’s okay to grieve about having been diagnosed with diabetes.’ I can remember that moment with such clarity. I looked at him and felt unable to breathe. I started to focus on my rapidly increasing heart rate and gulped air into my lungs. And burst into tears. As I caught my breath and my heart beat returned to normal I felt as if a huge weight had been lifted.

Grieving because we are diagnosed with diabetes should be acknowledged as part of the process of discovering our new life. It’s not being pitiful or pessimistic. Or thinking that life will only be depressing and not worth living. It’s not about being morose or tragic or hopeless. It’s about acknowledging that life will be different to how it was. There was a life before diabetes. I imagine for young kids with diabetes, it’s their parents who will remember this time and grieve what a diagnosis of diabetes means for their child.

I remember my life before diabetes. Less and less of that is clear and I can’t remember a time where I wasn’t haunted by the thoughts of what diabetes could possibly do to me as I grow older. My ‘what-I’m-scared-off’ is all tied up with diabetes.

No, we don’t get over it. We do, perhaps, get ‘used’ to it and stop thinking so much about life before. We do start to do new things to help us manage as best we can, and soon they stop being ‘different’ and ‘scary’ and just become routine. The well thought out changes we make to our lifestyle become second nature and we stop considering them as new.

Diabetes as a reality isn’t all terrible; it isn’t all bad news. Life with diabetes can be everything that you had ever imagined – just with the caveat of diabetes being there. Grieving about it is okay, especially at the time of diagnosis. I’ve learnt that there will be times that I grieve again – never as strongly as the time in the doctor’s office when I was given permission to let the grief come to the surface, but still, there are times when I do catch my breath and think ‘remember when….’