Today, I am feeling particularly giving, so I am going to give you some advice that may help you cure or prevent diabetes. Or both.

Here goes:

If you are a multi-tasker, I suggest eating cinnamon flavoured yoghurt in the nude while telling yourself how awesome you are.

Or.

You can ignore all the ridiculous claims, phoney promises, snake oil, COCONUT oil (I am so looking at you and your activated nuts right now, Pete Evans) and do the following:

  • Follow your management plan that has been put together by you and your healthcare professional/s. And for the purpose of this, we are going to say that a healthcare professional is someone who has studied for a number of years and gained some sort of qualification – as in a Bachelor degree – not a certificate they have printed themselves after doing a six week online course. A healthcare professional is not someone who writes a blog / is a TV personality / is a personal trainer / has ever appeared on a reality TV program / thinks they understand ALL health conditions because they have one themselves etc. etc. (Hence – I am not a healthcare professional. I am not even professional when push comes to shove. But then, I’m not telling you to eat Nutella while naked to cure your diabetes, (you can trust me on this one – it doesn’t work…). BUT, if I tell you to go eat some chocolate, you should. Because it tastes good.)
  • Be nice to yourself. Because you are an awesome person and having a health condition does not diminish who you are or your self-worth in any way.
  • Food doesn’t have a moral compass, so if you want to eat a doughnut, knock yourself out. Or don’t eat a doughnut if you don’t want to.
  • Remember that you did nothing to cause your condition. No one deserves to be diagnosed with any crap condition. No one is to blame. No one asked for it. (Really, no one writes in their letter to Santa ‘This year for x-mas I would really like an incurable autoimmune condition. I have been super good, so if you could give me two that would be great.’ Seriously. Santa never received that letter!)
  • You can look for things to blame because I know how great it would be to point at something and say ‘damn you for screwing up my pancreas’ but that isn’t going to make diabetes go away. Perhaps you could consider using your energy for doing something that makes you feel good. Like patting a puppy dog or eating a piece of cake. Or go cherry picking.
  • Surround yourself with people who make you feel good about life – not people who suck the life out of you and make you feel worthless.
  • Accept that it is absolutely, positively, completely and utterly okay to feel crapola sometimes about having a health condition that you didn’t ask for. It’s your diabetes and you can cry if you want to.
  • If you have the energy, put on some music and dance around your kitchen. I promise when I tell you it will make you feel good. Plus, you can claim it as exercise (quick – log a Big Blue Test – extended until today!) which will make you feel even better about yourself.
  • Read something by David Sedaris. Aloud if you can.
  • Stand in the sunshine for 10 minutes
  • Or, stand in a downpour and get totally soaking wet – a bit of Belinda Carlisle will make you feel fabulous! (Ideally, do this in your back or front yard so you can go inside and dry off. By all means, do it at work, but you will get strange looks from co-workers if you squelch back to your desk looking like a drowned rat, leaving a puddle in your wake).
  • If you are the hugging type, find someone to hug (ask first; it’s polite).

Now, none of these things is going to cure or prevent diabetes. I could claim that they will, but I’d be lying. Because nothing – NOTHING – will cure your diabetes. But doing whatever you can to make you feel good is a worthwhile thing to do.

Any other ideas? Go!

I was standing at the counter of a beautiful patisserie. In front of me was a stylish French barista with his attractive French accent wearing his exquisite French clothes. He was trying to upsell me pastries to go with the coffees I’d just ordered.

Try the tarte tatin. Or the pain au chocolat. And the éclairs are especially good today.’ His voice sounded a little muffled as if coming through an antique speaker.

I agreed to a couple flaky pastries, one with jewel-like berries, another with apricot jam.

I was about to walk away when he said – ‘this is for you’ and in my hand he placed a log of nougat.

I looked at it and broke a piece off, biting into the soft, gooey, chewy confection. It was sweet. So sweet.

I sat down at a nearby table, waiting for the pastries and coffees to arrive.  They were placed in front of us and all I could focus on was eating and tasting the delicious pastry. The jam oozed from one and I scooped it up, licking it from my finger. I greedily picked a strawberry from the other, exposing the frangipane underneath.

I pulled my coffee towards me and added a couple of sugars. Then a couple more. And a couple more. I stirred. And I stirred and I stirred the sugar into the bowl of milky coffee. More sugar. More stirring.

And then.

Then I woke up and realised with great clarity that I was low.

My hypo had infiltrated my dream. I was imagining a feast of carb-laden foods that would, of course, address the low blood sugar muddling my thoughts.

I sat up, adrenaline surging, realising just how low I was and grabbed the jar on my bedside table.

‘Are you okay?’

‘Mmm – just low. I was dreaming about French pasty.’

Diabetes has a way of twisting its way into my subconscious. On nights where my BGL is high and I need to get up overnight to pee, I wake suddenly, remembering dreams of water and pools and swimming in the ocean.

When I am low, I dream of gingerbread houses, fluffy marshmallow clouds and giant bowls of Skittles. Once, I dreamt that I was being chased by a huge jelly snake. Another time, the chair I was sitting on became a cupcake. I woke in the middle of one night confused and disoriented after dreaming I was in Enid Blyton’s Land of Goodies at the top of the Faraway Tree. (Obviously all that climbing had sent my BGLs plummeting!)

Alarms on my pump blend their way into dreams so that suddenly I hear doorbells ring, or metronomes ding.  Once, my dream turned frightening – I was running (ha – as if!), running, running during an earthquake. The ‘shaking’ ground was actually my pump vibrating.

The other night, after I ate my jelly beans and felt the adrenaline rush subside, I lay back down and started to fall asleep, willing myself back to the patisserie. And thinking about how when it was morning, heading to a local French bakery for breakfast sounded like a perfect start to the day. It seems that I like to spend my time dreaming just how I like to spend my time awake. Food and coffee. Coffee and food.

To our darling girl,

Happy birthday, beautiful.

Today, you turn 10 and this morning you headed off to camp for a week.

I can’t believe you are ten already. It really does only seem like yesterday that I held you for the first time, felt your soft skin against mine and looked into your eyes, melting into you, drinking you in. I remember all the milestones – the first time you rolled, crawled, walked, spoke. I remember the first time you fed yourself, your first babycino, the look on your face the first time I gave you a tiny taste of Nutella. I remember your first days of kinder and school and how confident you were as you marched on in, dragging me by the hand. I remember the look on your face when Santa delivered Bella in a box out the front of the house and your words when you found a new tiny black dog in your room just a few months ago. I remember tears and laughter and tantrums and giggles and hugs. So many hugs.

I can still remember the moment we found out that you were growing inside me and I can remember the moment that we were told we were having a girl. I already loved you but suddenly the intensity of that love increased so much that I felt it surge through my bones. In a flash, I had dreams and hopes for you. I had plans and wishes for what lay ahead. A baby girl to love; a daughter to raise. I felt so lucky. I still do.

I was not thinking about pink and princesses and My Little Ponies – although all those things did happen. I could see us running in the park and dancing in the kitchen. I could see you playing with our dogs and growing up surrounded by music and love and laughter.  I could see you sitting there while we sang Beatles songs to you and read you Enid Blyton. I was thinking and dreaming about a girl who would be strong and strong-willed and challenging. I wanted a girl who didn’t accept things as she was told, but would ask questions and want things explained to her. I hoped for a girl who would be fair and understand that unfortunately not all is equal in the world and that for some – for some girls – things are especially tough.

I hoped for a girl who would love to read, who would find the wonder and delight in books that I have. And, dammit, I wanted a girl who knew how to use an apostrophe correctly.

You are all these things and so, so much more.

We are told that we should be careful what we wish for, and believe me, there have been moments where I cursed myself for wishing for a strong girl. There were times where I thought how much easier it would be if you just said ‘okay’ instead of ‘but why?’ But when I think about you, and how inquisitive you are, I know that I wouldn’t want it any other way.

I am so proud of who you are at ten and I can only imagine how amazing you are going to be at 11 and 12 and 13. (Although I may need to come back and read this when you are a feral, vulgar teenager to remind myself that it is just a stage!)

I am proud of the way you are fair and kind and gentle. I am proud of your fierceness and strength. I am proud of how determined you are and how you have such a strong sense of what is right and good. I am proud of how curious about the world you are. I love how you can see the other side to the story and are prepared to hear everyone’s point of view. I love that you know how lucky you are in a lot of ways and want others to have what you have. I love that you can talk to me when you are sad or angry or hurting. I love that you trust me to always be on your side. I adore your cheekiness and spunk and quick wit.

I love how creative you are. I love your drawings – the tiny, tiny detail and all the effort you put in. I love the movies you make and the stop motion animations you have created. Your talent knows no bounds – it amazes me constantly.

I love your love of books – watching you learn to read was one of the most wonderful things I’ve ever experienced. I love the way you love Harry Potter and that we can spend hours upon hours upon hours talking about the characters, the plot and quoting and reading aloud passages. I love that you are a sneaky little monkey and read under the covers after lights out because you just want to read one more page!

I love that you can punctuate like a boss! I love that you say things like ‘I am very fond of my grandparents’, as though you have just stepped out of a period novel. I love how you love words and write the most beautiful, funny, clever stories.

But most of all, I love you because you are you. We are such a great team – you, daddy and me. We may not be the biggest family (although by the time you factor in three dogs and a cat, our numbers grow!) but we are a great team.

I watched you climb on the bus this morning. You were a little apprehensive as you didn’t know most of the kids going on this camp. But off you went. You looked back for only a moment and I could see that you were close to tears, but you didn’t cry. You kept going. And I wanted to crumble. I wanted to run after you for one more hug and to suggest that you come home with me and we just stay home together. But I didn’t. I half raised my hand to wave and then turned to go back to the car. My tears started as I drove away. Not because I was worried about you; not because I thought that you wouldn’t be okay. But because I knew you would.

First week home.

First week home.

You are so loved, darling girl. You are so loved. And I am the luckiest mum in the world. Because of you.

I love you.

I love you more.

I love you most.

I love you the mostest (not a word!).

Mum

I’m going to start by being honest and telling you that I think Sarah Wilson is an idiot. Her whole I Quit Sugar bullshit is nothing more than a moneymaking scam, and I will never understand why she thinks her D-grade celebrity status gives her any credibility when it comes to offering health advice.

But today, she has gone from being just a misinformed fool to an absolute troll. Because surely, that can be the only reason she would write that autoimmune conditions are all caused by self-hatred.

Oh yes she did.

Read this. I really don’t want to promote her stupid rantings, but read it. Read the ridiculous rhetoric. Read the assumptions. Read the complete and utter lack of anything resembling evidence. Read that this thoughtless opinion was a result of watching a TED talk given by Dr Habib Sadeghi, a so-called ‘healer to the stars’.

In addition to telling the world that autoimmune conditions are a result of self-loathing (as a person with three AI conditions, I clearly despise myself!), she also writes about a magic talent she has. So magic, that I am unable to understand why she is not teaching at Hogwarts.

Apparently, Sarah Wilson has the ability to ‘spot at “autoimmune type”’. What’s an autoimmune type? Well, the type who ‘…have an intensity about them, a desire to impress. They’re always the ones at the front of my lectures, frantically taking notes. They have an air of “I’m not good enough as I am’. I know as I write this, many heads out there are nodding.’

No, Sarah, no. They are not heads nodding, you foolish woman, they are heads shaking. In shock and disgust and amazement that someone could be so stupid, and dismay and outright disbelief that someone with a megaphone gets to say such damaging things.

Helpfully, Sarah has given us the secret of how to heal ourselves from these pesky autoimmune conditions we have hated upon ourselves.

It turns out The Beatles were right – all you need is love. Self-love.

Yes. That’s right. Sarah Wilson tells us that all autoimmune conditions can be cured with self-love.

Now, I am the first person to say that we should all be kind to ourselves. We shouldn’t feel guilt for our health conditions or blame ourselves (or anyone else for that matter). And when I am feeling good about myself – when I feel emotionally robust – it certainly does make it easier to care for myself and my diabetes.

But no matter how much I like or love myself – and truthfully, I actually do think I’m a bit of alright – I cannot cure my diabetes. And it would be irresponsible of me to think that I could.

Sarah Wilson, please, please stop writing such rubbish. Please stop outright lying to people about medical issues. Stop using your wide reach to say such damaging things. Please just stop.

Ten years ago, I was waiting very impatiently for an arrival. My little girl was only three days from being delivered and I was counting the hours with a mixture of fear and excitement.

Her arrival would be the culmination of years of planning, hard work, heartbreak and promise. And her arrival would mean that beautiful sentiment ‘First we had each other. Then we had you. Now we have everything’ was coming true for our little family.

Pregnancy was also the time where I came to fully understand the concept of diabetes adding a degree of difficulty to a situation. The planning prior to even thinking about getting pregnant, and then the maintenance of impossibly near-perfect BGLs was relentless. For those years – and it was years for me – my life was all about numbers and charts and graphs.

Of course, I was lucky and all the planning and hard work was all worth it. The moment I first held our baby in our arms and looked into her perfect little face with her full cheeks and tiny button nose I knew that I would do it again in a heartbeat for her. All the planning meant that I had the best chance for a healthy pregnancy and baby.

This year, I have been on the Expert Reference Group for the NDSS Diabetes in Pregnancy Program. This program is looking to improve and develop resources for women with type 1 or type 2 diabetes planning to have a baby.

pregnancy survey imageAt the moment, a survey is being conducted to better understand the kind of information currently available and provided to women with diabetes about contraception, pregnancy and women’s health.

If you are an Australian woman aged between 18 and 50 years with type 1 or type 2 diabetes, you can take place – and go into the draw to win an iPad Air! The survey will take you about 20 minutes to complete and is completely anonymous.

Click here to take the survey. You have until 30 November.

Women with diabetes deserve to have the best chance of having a healthy pregnancy and this work will go towards providing information and resources to help.

Want more?

Years ago, I was involved in the development of Can I Have a Healthy Baby? a booklet about diabetes and pregnancy. In subsequent years, I was involved in the review of this resource. This year, the Diabetes and Pregnancy program has reviewed, revised and rewritten this booklet. It will be relaunched as Having a Healthy Baby and will be specifically for women with type 1 diabetes. The Type 2 diabetes version will be developed and launched in coming years. The new resource will be available electronically from 3 December 2014. Keep an eye out for it!

Today’s Friday music is dedicated to the three-days-away-from-being-ten-year-old. I thought this about her the day she was born and every single day since. Thanks Stevie.

DISCLAIMER

The Diabetes and Pregnancy National Develop Program is funded by the NDSS. I am a member of the Expert Reference Group. I do not receive any payment for sitting on this group, however it is part of my role at Diabetes Australia.

The other day, I, (possibly stupidly), weighed in on a Facebook conversation. A friend was taking a battering for having said that she really didn’t think that having diabetes was all that dire, and that she tries to focus on the positives.

My friend is a smart cookie and she certainly didn’t need anyone to swoop in to defend her. I just wanted to add my opposition to the growing number of people who were having a go at her for daring to say that, in her opinion and experience, diabetes is not that bad.

I frequently say that diabetes doesn’t stop me from doing anything. I acknowledge that sometimes, there is a little extra work that goes in – some extra forward planning. But diabetes hasn’t stopped me from much at all.

Is this one of those incredibly privileged-white-ivory-tower comments from someone who is living without diabetes complications and can access whatever care she chooses to manage her diabetes?

Maybe.

But does that make my experience and they way I feel any less important or real?

I know that I am very fortunate when it comes to the diabetes care available to me. And with my support networks and a healthcare system that provides me with affordable insulin and subsidised supplies. I know that all of this makes my opinion of life with diabetes different to many others in the world.

But, quite frankly, I don’t think that this is what those in this particular conversation who were complaining about how hard it is to live with diabetes were talking about. I don’t think they are talking about the problems with access to healthcare. The thing that kept coming out in the conversation the other day was how awful it is that people in the general community don’t understand what it’s like to live with diabetes each day; that they have to deal with ignorance about diabetes. Oh, and that they can’t be an astronaut.

I am not belittling or minimising how others feel about their particular life with diabetes. And at no time did I (or my friend) say that diabetes doesn’t suck. Of course it does – we all would love a cure and for diabetes to go away.

The thing that struck me was how my friend was expected to justify her positive feelings. It was almost that she was not allowed to say that she felt okay about living with diabetes. Or that her experience – her positivity – wasn’t as valid as those who don’t feel so good. When I jumped on board, I felt that I was treated the same way.

There is no right way to feel about living with diabetes. Some people feel okay about it and their experience is that it impacts minimally on their life. Others feel it is a great burden. Some of us oscillate between the two, depending on how we are coping and feeling at one particular time.

But no one has the right to say that anyone else’s feelings are less acceptable.

For the most part, I don’t think that diabetes has impacted all that much on many aspects of my life. Sure, if my beta cells hadn’t decided to run off to the Bahamas or wherever they have gone, I wouldn’t be writing this blog, but I’d probably be writing another one (about a far more interesting topic like, I don’t know, ‘baking with bacon’*). And I might not be working for a diabetes organisation, but I’m pretty sure I’d still be doing the same sort of work – just with a different focus.

I can be accused of looking at diabetes through rose-coloured glasses, or not really understanding just how tough it can be. I can be told that until I develop complications that make me consider how limiting this condition can truly be, I should just keep my happy thoughts to myself.

But it’s how I see it. My glass is half-full.

At least it is today.

*Note to self – register blog: ‘Baking with Bacon’.

Big Blue Test

Generally, I need a bloody good excuse to consider exercising. It’s been well-documented here on this very blog that I am exercise averse and would do pretty much anything to avoid donning a pair of runners to be physically active.

Little inspires me to keep fit and I really have never, ever understood the attraction of a workout.

However, guilt doing something good so that I can boast and be supercilious is a motivator.

Enter, the Big Blue Test.

This is the fifth year the Diabetes Hands Foundation (DHF) is running this campaign which raises diabetes awareness and funds. Since it started in 2010, DHF has donated about $250,000 to charities helping people with diabetes. This year, the aim is to raise $35,000 which equate to 35,000 Big Blue Tests being logged.

In case you need a feel good reason to exercise – there it is!

BUT! There is no time to waste. YOU ONLY HAVE TODAY!

It’s easy, easy, lemon squeezy to take part in. There are only four steps:

  1. Check your BGL
  2. Exercise for between 14 and 20 minutes
  3. Check your BGL
  4. Log it – here. (Or, to be a fancy Nancy, get the iOS or Android app.)

Could. Not. Be. Easier.

By the way, exercise doesn’t necessarily mean running or walking or getting on a bike. Think out of the box. Gardening, vacuuming, walking the kids to school, washing windows can all count as physical activity. I know that I hypo anytime I so much as look at a vacuum cleaner!

And, ahem, for another out-of-the-box idea, a morning, afternoon or evening quickie could not only be the perfect interlude in your day, but also a nice way to log a Big Blue Test. Plus, it’s nice to do charity work with a loved one.

By the way, the Big Blue Test is for EVERYONE – not just people with diabetes. Those with working pancreata (it’s the plural – look it up) simply log their exercise. (And that’s ANOTHER good idea to consider the quickie idea – you get two Big Blue Tests for your buck! Oh, stop it. I said BUCK!)

What are you waiting for? Go!

I was driving to pick up my daughter from school last Friday afternoon, and could feel the pressure of the previous week lifting. World Diabetes Day was all but over. There was, of course, the matter of a 24 hour tweetathon organised by the clever Cherise from DCAF, but that would be fun and interactive. The official things were over. Done and dusted for another year.

The thought of picking up the kidlet and chatting about her day, and things we had planned for the weekend made me smile. I’d been distracted with the craziness of the week and we’d not had our usual long, meandering conversations. I was looking forward to hearing what she’d been up to and NOT talking about WDD.

She ran out of her classroom to greet me, a big smile on her face, her bag hanging from her back and her latest book in her arms. And off she went filling me in on the day she’d had.

After telling me who she’d played with and what she had done in PE and reminding me that on Monday her Italian Choir was rehearsing for an upcoming concert at a neighbouring school and that she would really like to go cherry picking soon and how Sooty would like a run in the park, she said, ‘I told Mr D that it was World Diabetes Day today. I wrote it up on the board at the beginning of the day.’

I looked at her, surprised at the direction her stream of consciousness conversation had just taken.

What’s that, darling?’ I asked.

‘This morning. When I got to school. I told Mr D that it was World Diabetes Day and he said I could write it up on the board. Then we had a discussion about it.’

‘Really? What did you talk about?’

‘Mr D wanted to know if there was anyone who knew someone with diabetes. Of course, I said I did. And so did A.’ She was referring to my beautiful neighbour Jo’s gorgeous boy who is in the same class. ‘And S – her grandmother has diabetes. Type 2 diabetes. She checks her blood sugar like you do.’

‘I was surprised that Mr D knows so much about diabetes. But then he said that one of his friends has type 1 – that’s why he knows about it. We spoke about the different sorts of diabetes. A and I were saying that type 1 is because the body stops making insulin. And we talked about pumps. Hey mum – can we go get iced chocolates for afternoon tea?’

Subject changed, we headed to our local café, sat outside and enjoyed the sunshine.

I looked across the table at my nine year old as she slurped at her iced chocolate. World Diabetes Day is about raising awareness of diabetes to people in the community. In her own little way, she had done that in her classroom. Just because she could. Just because mum has diabetes. I had a little advocate on my hands. And I couldn’t have been prouder.

My little advocate

The kidlet and her side kick.

 

A couple of weeks ago, I found a lump in my breast. This was the first time I’d ever noticed anything in my breast – any change or anything to worry about, and spent the next 24 hours catastrophising the situation, expecting the worst.

Of course, it turned out to be nothing, but I had a week of being majorly stressed and anxious about it.

Here is how the whole thing played out.

Friday night – 7.30pm
It was a warm night, and I was wearing a loose fitting top. I was on the couch, reading in the quiet house. The only noise was from the sleeping puppy at my feet.
 

I scratched my right side and stopped. I thought I’d felt a lump on the outside of my breast. I flattened my hand and, using the tips of my fingers, prodded gently. There was definitely a lump there. ‘There is a pea-sized lump in my breast,’ I said to myself. I couldn’t stop pressing my skin, trying to get an idea of what was going on under there. How long had it been there for? It wasn’t painful – was that good thing?

I’d never thought of my breasts as being a health issue before. Now it was all I could think about.

Saturday
Denial day. Refused to think about it which, of course, meant I thought of nothing else. My left hand was almost permanently attached to the side of my right breast, prodding at the lump, trying to determine if it was the same size as the night before. It was.
 
Sunday
I woke up and sprang into action, heading to the Sunday-morning drop-in clinic at my GPs. He wrote me out a referral for a mammogram and (if needed) an ultrasound at a private imaging centre. ‘Make an appointment for as soon as you can,’ he said to me, handing me the referral form. ‘More for your own piece of mind than anything else.’
 

He asked me to make an appointment to see him again on Friday, saying that it may not be necessary and I could cancel if I didn’t need to see him again. I nodded. ‘In most cases, it turns out to be nothing, Renza,’ he said to me, clearly noting the look of unease on my face. ‘Get it checked out. Okay?’

Monday
I called the imaging centre and was given a 10.30 appointment that had just come up after someone cancelled.
 

I had no idea what to expect – I’d never had a mammogram before. My mum refers to them as ‘boob sandwiches.’ It was a perfect description! After contorting my body into the most bizarre positions to get the image, the mammogram was over and I was told that I would also need an ultrasound.  

‘Is that bad? Why?’ I asked, panicked that it was because there was a problem.

‘You have dense breasts,’ I was told with no further explanation and I was too confused to ask what that meant.

I had an ultrasound and asked the radiologist what she could see knowing full well that you wouldn’t say anything. ‘Your doctor will have the results in the next day or so.’ Was all I could get from her.

Tuesday
Public holiday and I wore a gorgeous red spotty dress that fitted tightly across my breasts. I somehow felt the anxiety of the previous few days had lessened. There was nothing more I could do at this stage. I had found a lump. I had seen a doctor. I had been to have scans. Nothing more for me to do. But wait.
 
Wednesday
Let’s not discuss the ordeal of actually getting my results from the GP. But at 5.30pm, I had a call from the doctor I’d seen on Saturday who told me that the mammogram and ultrasound ‘looked good’ but I needed to see a breast doctor ASAP – ‘just to close out the investigation,’ he said. ‘I’ll cancel your appointment with me on Friday – I will fax a referral across the specialist now. Here is her number…..’
 

‘It’s okay,’ I related to the people I’d told. ‘Looks good. I just need to get the final okay from a specialist.’

Thursday
Called breast doctor. Another cancellation meant I could get in to see her the following afternoon.
 
Friday
Appointment with breast doctor. She was absolutely delightful as was the breast nurse who took my medical history. The breast specialist wasn’t really sure why the radiologist referred me to her as the scans clearly showed cysts. ‘Did you tell the radiologist you are in pain?’ She asked me. ‘No – I’m not in any pain,’ I said.

She told me that there was nothing to worry about at all. The cysts visible in both my breasts are hormonal and incredibly common. They could disappear. Or they could get bigger and become painful in which case I should call her and she would drain them.

I had questions to ask and she answered them very clearly and gave me a few things to read. ‘You can call me anytime you are concerned.’ She explained that I really don’t need to have a mammogram again until I am fifty and if I was to find any new lumps, I should see my GP and ask that I be referred for an ultrasound. ‘You have dense breasts,’ she told me. Again with the dense breasts. ‘A mammogram can’t see enough’.

‘Thank you for seeing me at such short notice,’ I said, as was leaving. ‘And thank you for being so kind and answering all my questions. You’ve really put me at ease. Don’t take this the wrong way – I hope I don’t have to see you again.’

She let out a loud laugh. ‘I hope so too!’ She said.

That’s how it played out.

But it was interesting to be dealing with a health concern that is outside of my usual area of comfort. I was stressed – really stressed – before each appointment. I had no idea what to expect and I was unsure of what the process would be.

‘Why do you have to see the GP again on Friday?’ my husband asked me at one point during the week.

‘I’m not sure,’ I replied. And I wasn’t. Why would I need to see him again if the scan was all clear? And if it wasn’t clear, surely I’d need to see a specialist.

‘If the scan looks okay, why are you seeing a breast specialist?’ he asked me after the GP had given me the results.

‘I don’t know.’ And I started to worry again, the relief I’d felt just a moment before when I’d been assured that the scans looked fine suddenly evaporating. Could it still mean that there was something more sinister than a benign cyst in my breast? My hand automatically moved to the side of my breast again, probing for the lump.

‘Will the breast specialist do a biopsy?’ a few people asked me.

I don’t know. I don’t know. I don’t know. Because I hadn’t asked the questions that I would have –that I knew I should have – because I didn’t understand this landscape. I didn’t know the questions to ask.

‘I’m out of my comfort zone.’ I told my husband. ‘I don’t know how this system works. I know diabetes. This? This I’ve got no clues about.’ I hated feeling this way. I felt out of control.

When I reflected on the week, I focussed on the positive – the good – outcome. I had seen every healthcare professional I needed to quickly – seeing them privately and being prepared to pay surely helped speed up the process. I had the answers I was looking for. But it was scary for a while there – because I had no idea how to navigate the system or know what to expect. I was stressed wondering what the lump was about and I was stressed trying to work out the system.

I take for granted that I have to operate within the healthcare system far more than I would like. But I have carved a place in the diabetes system where I am comfortable, confident and self-assured. It wasn’t always that way. I must have felt anxious one time. Surely?

Friday night 7.30pm
A week exactly to when I first found the lump. I was shopping in the city with my family. We ate sushi, we looked in shops, I found a dress to wear for World Diabetes Day. All without a care in the world about my breasts…

WDD2014

It’s World Diabetes Day and everyone is talking diabetes. Or so it seems.

Do we need another awareness-raising day?

Yep. We do.

We know the numbers. We know that diabetes is serious. We know that prevention is the key – prevention of type 2 diabetes (where possible) and of complications in those already living with diabetes. I could write how World Diabetes Day can draw attention to these facts.

But instead, I’ll tell you why I – a person living with diabetes – need World Diabetes Day.

I need today because it gives an opportunity to talk about real life with diabetes.

On Wednesday, (also known as ‘I hate diabetes day’) I spoke at the Austin Hospital’s Grand Rounds. Most hospitals have Grand Rounds – it is a learning opportunity for doctors and other healthcare professionals to hear presentations and ask questions about different medical conditions – sometimes outside their area of specialty.

Wednesday’s session had a World Diabetes Day focus – the lecture theatre was adorned in blue balloons and just about everyone in the room was wearing an item of blue clothing.

I gave my talk which consisted a discussion of the consumer-focused program we run at Diabetes Australia – Vic; how healthcare professionals can use social media to interact with people with diabetes and how PWD use social media to connect.

At the end of my planned talk, I looked around the room. I think my talk had been well received – I know that I am certainly different to the usual healthcare professional presenting and I also knew that the next speaker – the wonderful Professor Joe Proietto – was giving a talk on type 2 diabetes medication.

‘Just before I go, I want to say something,’ I said. I took a deep breath. ‘I hope you have enjoyed my talk. I hope that it has given you a better idea of some of the programs and activities available to be people with diabetes. I hope you are thinking about what your Twitter handle is going to be because I really want to see ALL of you in the Twittersphere next week!! But I just want to add something.’

I moved away from the lectern and stood in the middle of the stage.

‘I look okay today, right?’ I saw heads nodding around the room. ‘My dress is neat, my hair is clean. I have make up on and I know I have matching shoes on – I checked before I left the house. My lipstick is on straight. I just gave you a twenty minute talk, and I think it all made sense….I think? The words did form coherent sentences, right?’ More nods from the people in the theatre.

‘I look okay.’ I paused again.

‘But let me tell you how I am feeling. I had a terrifying hypo overnight and was awake for a good part of the night. I needed help to deal with it, and my daughter, when she woke up this morning, had to see me feeling pretty damn crap. My dad is sitting over in the corner there because I was just too tired to drive here from Brunswick, and he kindly offered to chauffeur me so I wouldn’t need to take a cab.’ I looked over at my dad and smiled. And then kept going.

‘Why did this happen? Well, I guess if we want to find a reason, we could say it was because before I went to bed last night, I didn’t check my blood sugar. You see, I just couldn’t be bothered. Now, before you think ‘how stupid’ or ‘serves her right’ or start to judge me, know that I had already checked my BGL about 15 times throughout the day and the thought of doing another BGL check was just too much for me. And I thought that I was okay based on the previous check and knowing that I had no insulin on board.

‘But you know what? It doesn’t matter why it happened and if I wasn’t telling you this now, you would never know. You wouldn’t know that I really would like to curl up under one of the seats and fall asleep; you wouldn’t know that I am still dealing with the hypo-rebound and my BGL is sitting somewhere in the mid-teens. You wouldn’t know that my arms and legs are heavy from being post-hypo-exhausted. You wouldn’t know that I kind of want to cry because today, my diabetes is other people’s problems. Not just my own.

‘Now, I’m not telling you this because I want you to feel sorry for me. I’m not telling you this because I want you to pity me because I have diabetes. It’s crap and that’s all there is to it. I’m telling you this because I want you to remember this story next time you are sitting opposite one of your patients who is living with diabetes – or any other medical condition for that matter – and they look all great. Don’t assume. Don’t ever assume that everything is all fine. Because I can tell you for sure that while I will be blogging about this to share with other people with diabetes, I certainly won’t be sitting in my next appointment telling my endo about it.’

I stopped again. The room was silent – no one moved.

‘Thank you so much for having me here today. And happy World Diabetes Day for Friday.’

I walked off the stage.

I love Joni Mitchell. And I love this song – Blue – which is, of course, perfect for today.

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