Diabetogenic

Happiness is…

November 25, 2016 in Diabetes | 2 comments

Diabetes and happiness – do they go together? On Tuesday night, the #OzDOC tweetchat asked that very question and I’ve been thinking about it a lot.

The longer I’ve lived with diabetes, the less inclined I am to be positive about it. I spent a lot of time in the first fifteen years being very ‘rah-rah-rah-diabetes-won’t-stop-me’ about it all, but in the last few years, I seem to feel that there are two words that more than adequately sum up how I feel about diabetes:

diabtes-sucks

I am not an unhappy person – I’m annoyingly chipper and perky most of the time. I just don’t feel that any of my happy nature can in any way be attributed to the fact that my beta cells are AWOL.

Maybe I’m burnt out – diabetes burnout, end-of-year burnout, thank-fuck-diabetes-month-is-nearly-over burnout. I’m exhausted and trying to think about how happiness and diabetes fit just made me realise how they don’t.

So to put a positive spin on things, I’ve tried to come up with a list of things about diabetes that do make me happy. It wasn’t easy, but here we go.

Diabetes happiness is:

Day five of a pump infusion set
Working out that even with the low cartridge warning, there is enough insulin in my pump for the night and I don’t need to get out of bed, find insulin, refill old or fill new cartridge, rewind pump, load and prime cartridge and infusion set… (AKA delay much needed sleep)
Sitting down to a meal of mystery carb content food, closing my eyes, SWAG-ing a bolus and winding up under 7 two hours later
A healthcare professional calling my name at the exact time of my appointment, resulting in no need to sit in a waiting room flicking through Readers Digest circa 1984
The sound of silence – no Dex alarm for five or more hours
Naked showers – days where the planets align and I need to change both my infusion set and sensor on the same morning, standing in the shower with absolutely nothing on my body at all
Finding a couple of rogue glucose tabs at the bottom of my handbag when I am stranded in the middle of nowhere and get a ‘fall rate alert’ alarm on my Dex
Diabetes in the wild
A night of no disturbances – no alarms, alerts, treat-me-now lows or need-to-pee highs
Walking through a crowded room and not having anyone say ‘What’s that?’ while pointing to my arm
Catching an impending low and treating it perfectly
No.Rebound
Seeing complete strangers wearing blue on Fridays and thanking them for raising diabetes awareness without even knowing it
‘Renza, I see no sign of diabetes-related eye problems’
A door handle that doesn’t get in the way
Bras that fit perfectly and perfectly house my pump
Diabetes friends who swear as much as me
The end of stupid lists about diabetes.

How she got here

November 24, 2016 in Babies, Diabetes, Family, pregnancy and diabetes, Real life | 1 comment

Our beautiful girl turns twelve years old today. It’s both a lifetime and a minute in time and I sometimes look at her and still cannot believe that she is here.

When I was pregnant, I kept an online diary for a diabetes website. That site is no longer there, but I still have the diary and have been waiting for the right moment to publish it here on my blog.

Today is that day. It’s a long read – a short entry for each week of the pregnancy – but it takes me back to exactly how I was feeling and coping throughout the pregnancy. My favourite part is the last part – our baby’s arrival – which I wrote when she had been home for only days and my head was in a new-parent fog and I was desperate to try to put in words what had happened and how I felt on the day. It’s funny, because it was starting to get murky then, but today, I can remember everything about it.

We tell our daughter her birth story occasionally – often around her birthday. And in there amongst the way we felt when we first heard her cry and saw her face for the first time, is the story of how much she is wanted and the path we took to actually make that happen.

It’s all here, so please have a read if you’d like. Yesterday, when giving my talk to some healthcare professionals one of them asked if I would mind sharing how I felt when pregnant and what a diabetes pregnancy is like.

And I said: It was the most difficult thing I have ever done emotionally. It was the most intensive time of diabetes care I have ever experienced. I saw my healthcare professionals more frequently than I saw my friends and family. I was checking my BGL over 20 times a day – there was no CGM here then. I had never felt such anxiety or fear as I did at that time. But equally, it was the most magical time because in amongst all the diabetes stuff, was my daughter and now – now all I think about is how it was the best thing I could ever have done.

Twelve years old and growing up into such an amazing young woman. I could only have hoped on the day she was born that she would be as wonderful as she is today. Happy birthday to our magical girl. I never thought I would be able to love her more than I did the day she was born and yet, somehow, that love just keeps growing. We’re so excited to see what you do next darling. And we’ll be right there alongside you, continuing to cheer you on.

14656294_10154593564920789_6990824687929525009_n

Thank you for your comments…

November 23, 2016 in Awareness, Communication, Diabetes, DOC, Family, Health, Healthcare team, Social media, technology | 5 comments

Today, I gave a talk to healthcare professionals at a hospital in outer Melbourne. I was invited months ago after the organisers heard me speak at another event, and they wanted me to speak about living with diabetes.

As I said in the introduction to my talk, I am dead boring. Plus, I am only one voice. So, to create some balance and some interest, I reached out through Facebook and asked this:

As usual, the online community didn’t disappoint. I had over forty responses and weaved them into my presentation, adding real impact to what I was saying, reinforcing my comments with the comments of others walking a similar path of life with diabetes.

I started by asking the audience a question…

And then I said that I would be talking about life with diabetes. Except, I reminded the audience that life with diabetes was very different depending on where in the world you were diagnosed and that my story is about my ‘first world diabetes’ and I checked my privilege almost as a disclaimer.

I used that point in my talk as an opportunity to speak about those who cannot access or afford insulin and how this is simply, not okay. I could sense the surprise in the room as I said that people are dying because of lack of access.

Then I spoke about what diabetes is to me and here is what I said:

It’s boring and tedious and frustrating.

It’s made me an expert. And that we need our HCPs to acknowledge the hours and hours and effort we put into managing our own brand of diabetes and the expertise we develop from living so closely with this condition.

It’s about humour – because laughing is a tool I use to get through this and that’s okay.

It’s about words, because language matters and sticks with us forever.

It’s about stigma. I asked if they could think of another condition that was so stigmatised and surrounded by blame – and that while we experience it with type 1 diabetes, I said that I believed my brothers and sisters with type 2 diabetes have it so much worse.

It’s invisible – despite the bright blue patch surrounding my Dexcom, most of the time it is hidden away and not on show for all to see.

It’s about people and community and the DOC and the people that are like the air I breathe – without whom I would not be managing at all.

It’s about my family. And then I explained, fighting back tears, that this is the hardest part of life with diabetes for me. I’ve written about it a lot, spoken about it often. But thinking about how diabetes impacts on Aaron and the kidlet breaks – absolutely shatters – my heart into pieces. The worry I cause my parents makes me feel guilty and resentful. And every day I regret the time I told my sister that my life expectancy had been cut thanks to my type 1 diagnosis because I will never forget the look in her eyes indicating the pain I had just caused her.

I answered a couple of questions and then my talk was done. I thanked the audience for listening, stepped down from the stage, took a deep breath. Someone came up to me as I was gathering my bags and said that she learnt more about real life with diabetes in that talk than in all her years nursing.

This is the power of story telling. The comments I read out and shared have so much power in them. We need to keep telling our stories, turning the way we talk about diabetes on its head. It’s not about the numbers, the tools or anything else. It is about people.

Thank you so much to everyone who shared their comments with me on my Facebook post yesterday and today.

Fear of hypos from those without diabetes

November 21, 2016 in Babies, Diabetes, Family, Hypo, Lows, Real life | 3 comments

In the lead up to our daughter being born, I was told that it was most likely that she would need to go to the special care nursery immediately after she was delivered because of low blood sugar. This had been the case for most of the dozens of other women with type 1 I’d spoken to beforehand, and I was resigned to the fact that there would not be many cuddles for a day or two.

The reality was a little different. As soon as she was delivered, her heel was pricked and her blood glucose was checked. ‘She’s good to go straight to your room,’ said the paediatrician charged with making sure our precious baby was all okay. He placed her in my arms so I could drink in the beautiful little munchkin

‘No; wait. She needs to go to special care. I have diabetes, remember?’ I said, as I lay on the table being stitched up after the C-section, looking in awe at the wriggling, full-cheeked munchkin who had just been lifted from my body.

‘Her blood sugar is fine,’ the paediatrician smiled at me. ‘Aaron can take her to your room and as soon as you are out of recovery you can join them. Lots of cuddles this morning – skin to skin contact is good for you both! We’ll keep an eye on her and do hourly BG checks to make sure she is okay.’

An hour later, I was stitched up, out of recovery and wheeled back into my room where Aaron was sitting holding our new daughter. He stood up and brought her over to me, positioning her on my chest and I pulled away my hospital gown and her swaddling so I could feel her against me.

With the help of a wonderful nurse, we started to learn how to breastfeed. There in my arms was our daughter. I couldn’t stop staring at her and couldn’t believe she was finally with us.

My endo walked into the room to meet her, and see how I was doing at the same moment another nurse walked in to do the first BGL check. As I held our baby, I cringed at the lancet going into her tiny, tiny heel and the tiny, tiny whimper she made.

I looked at the nurse and saw her turn white. “She needs to go to special care. Now. Her BGL is really low.’

My ever-calm endo, looked at the result. ‘I don’t think that is right. Can you check again? Maybe using Renza’s meter?’

‘No!’ said the nurse, starting to panic. ‘She needs to go right now.’ And she snatched the baby from my arms, put her back in her crib and headed quickly out of the room.

‘Go with her!’ I said to Aaron, but he was already on his feet scurrying after our baby girl.

I was in shock. What had just happened? Our baby had been peacefully snuggling with me, drinking in some of the tiny bits of colostrum she could manage. What was the problem?

In the special care nursery, Aaron watched as the doctors and nurses tried and tried and tried to get an IV line into our tiny newborn baby before they finally decided to just give her some formula.

As it turns out, her BGL was fine. They needn’t have bothered trying with the IV. The meter used on the ward was probably faulty. She could have stayed with me and all would have been okay.

But I wasn’t upset – or surprised – because I understood exactly what I was seeing. This was hypo anxiety from healthcare professionals and I’d seen it before.

When in hospital having my appendix out, a nurse walked in when I was checking my BGL. When she saw the 4.2mmol/l on the meter, she insisted a drink two glasses of juice and eat a sandwich, despite my protestations that I was fine and a few jelly beans would more than do the trick to keep me in the safe zone. She stood there watching me as I forced the juice and food down my throat.

In A&E once, an emergency doctor wanted me to disconnect my pump, because it was sending me low, even though my BGL had been sitting pretty in the 5s for most of the time I was there.

Another time, at work, a diabetes educator jumped up to grab me juice and almost shoved a straw in my mouth when she noticed by CGM trace heading downwards, even though my BGL was still 6 and I had plenty of time to treat before going low.

And it’s not just HCPs. In a meeting once, a senior staffer I’d worked with for over two years asked me if I needed a nurse to ‘help me’ after I excused myself for eating a couple of jelly beans because I was preventing a low. ‘A nurse,’ I said. ‘Why?’ I was confused at what was going on. ‘Because you are hypo. To make sure you are okay.’ And then I was more confused because what possible would have ever suggested that this very easy-to-treat hypo would need the assistance of a nurse?

There is a lot of anxiety around hypoglycaemia. Fear of hypos in people living with diabetes and their loved ones can be paralysing. I know that after a particularly nasty or sticky hypo, I get anxious about lows and I see my loved ones watching me more closely.

But I also work really hard to try to keep some perspective about managing them. And those around me know that keeping calm while I’m low and gently asking if they can do anything is helpful, but panicking is not. Interestingly, no one with diabetes has ever been flustered when they see me going low (nor I when around one of my friends having a hypo).

In each of the situations I described above, I needed to do a lot more to settle and reassure the person panicking than to manage my own low blood sugar. Having to calm down the anxieties of others is not really what I want to do while low.

Unfortunately, low blood sugar is a reality of diabetes for many people. I see it as a short term complication – something I do all I can to minimise, and treat as well as possible – that just needs to be managed. Of course, it can be scary. But doing all I can to keep calm yields far better results: I tend to not over treat and eat the whole kitchen when I am calm.

But what I want to know is why so much anxiety from those around us? If we know that the best way to manage a hypo is calmly, rationally and with measured treatment, why the panic? What are HCPs being told about hypos that send them into a spin so they overreact? And what could be done better to ensure those around us help rather than make things worse when we are low?

Calmly. Quietly.

Interweb jumble #20 – the WDD week edit

November 18, 2016 in Awareness, Diabetes, DOC, Peer support, Real life, Social media, World Diabetes Day | 3 comments

What a week. World Diabetes Day (WDD) is over for another year, but there is still lots going on in the diabetes space and in my life in general. Here are just some of the things making my brain a minestrone soup of dot points.

Mayo Clinic in Oz

I was lucky enough to win a scholarship to attend the Healthcare and Social Media Summit run by the Mayo Clinic earlier this week. I haven’t even started to pick apart all the amazing things I learnt during those two days, but there will be more to come soon.

Crown

Downtime is bloody hard to come by these days (because: November). BUT!!!! Binge watching a new show helps with some mindless entertainment and winding down at the end of the day. And Netflix has come to the rescue with The Crown. I admit that this is just a space filler until the REAL EVENT…But in the meantime, it will do and is actually super enjoyable.

Talking diabetes without being rude

We often see ‘Things to not say’ lists. I wrote one here where I suggested the only thing to say to someone living with diabetes was to offer them a Nutella cupcake.

I still stand by that advice, however thought I’d use WDD as an opportunity to write a more comprehensive list and it was published on the Mamamia Women’s Network. You can read it here – and may want to consider sharing it widely.

One of the things that we need to aim for is talk diabetes OUTSIDE our diabetes world. This article was not written for people affected by diabetes – we already know to not say most of these things. It is for those who say the annoying things because they don’t really understand diabetes.

So – have a read. And then share it around. And add your own ideas in the comments section on the Mamamia page. Let’s see just how far this can go to stopping some of the comments we hear over and over and over again!

Gilmore Girls

One week to go. We are ready!

WDD Twitter Marathon

The force of nature that is Cherise Shockley managed to pull off (once again) a 24 hour tweetchat for World Diabetes Day that included moderators and participants from all over the globe with an impressive variety of topics.

There was a bit of national Aussie pride in there with 4 hours of the chat being moderated by advocates from Down Under. I moderated an hour – with a focus on diabetes stigma – at 5pm ET which was 9am (Wednesday 15 November) AEDT, meaning I was into hour 27 of WDD when it was my turn to ask the questions.

Blue fatigue

My hand is a pretty damn good indication of how I am feeling right now. Still hanging in there with the whole ‘go-blue-diabetes-awareness-rah-rah-rah’ thing, but only just. Half way through Diabetes Awareness Month; World Diabetes Day is over and I am really feeling a lot of blue fatigue.

It seems that I am not the only one. Kerri wrote this on Six Until Me the other day and it resonated with a number of people, me included.

But the people; the people!

I was lucky enough to spend World Diabetes Day with some great diabetes people. We had house guests from Germany with us and my neighbour Jo popped in for a bit too. And my Amazing family were also there and, you know what, we hardly spoke diabetes at all!

It reminded me that my diabetes world is about people – those I’ve met; those who support me through it all; those I connect with online and in real life. And I know that I couldn’t do this without them to help me through.

#IFLGseesawchallenge

And finally, diabetes is such constant balancing act, and I don’t know about you, but I rarely manage any semblance of equilibrium!

So, I love the Insulin for Life Seesaw campaign – as both a metaphor for diabetes and also as a way to raise funds for an important cause.

Get involved by uploading your photo depicting the seesaw challenge of living with diabetes. Add the tag #iflseesawchallenge to your pic and Medtronic Australia will donate $1.25 to Insulin For Life Global. $1.25 is the amount it costs to transport a week’s worth of insulin to someone in need in a developing country.

Insulin for Life Global

November 14, 2016 in Advocacy, Awareness, Diabetes, World Diabetes Day | 1 comment

Yesterday, I went to the fridge and pulled out a fresh vial of insulin. I used it to refill my insulin pump and then placed the mostly-full vial in my bag. As it was the second to last vial from my current prescription, I called my local pharmacy and asked if they could order me in a repeat of my prescription.

And then I wandered to a favourite café for breakfast and didn’t think about it again. I knew that the following day I’d receive a call from the pharmacist telling me that my insulin was waiting for me and I’d go in on my way home from work, fork over $40 and be set for another three or so months.

Rocking my new Insulin for Life Global tee. So honoured to be an ambassador for this worthy cause.

That’s not how it works in a lot of other places around the world. And it’s why when I was contacted by Joanna Sader from Insulin for Life Global asking me to be an Ambassador for the organisation, I didn’t hesitate before answering ‘Of course!’

Insulin for Life has been around for a long time. I remember when I was very new to the diabetes organisation world hearing all about it from the organisation’s founder Ron Raab. And then, a couple of years ago, I saw a wonderful documentary, Sweet 16, about the program, made by a young woman from Canada.

The organisation has continued to expand over the years, and today, on World Diabetes Day, is launching Insulin for Life Global (IFL Global). The organisation contributes to international efforts providing insulin to people unable to afford or access insulin or diabetes supplies in developing countries.

IFL Global, through its country affiliates, collects in-date and unneeded insulin and diabetes supplies, distributing them to developing countries, where they are distributed free of charge. It also fundraises to support transport costs, which is the biggest barrier to keeping the operation going.

You can learn more about the program by going to their new website and by watching the video below.

How can you help? Glad you asked! There are many ways you can get involved including making a one-off or regular donations, promoting their work through your networks or donating unused, in-date insulin and diabetes supplies. Details about how you can contribute to IFL Global can be found here.

I write a lot about remembering to look outside our bubble of privilege. Insulin for Life Global is another player in the space reminding us that diabetes drugs and supplies are not a right for all. And we can – and should – do something to help. Our diabetes brothers and sisters around the world do not deserve to die because they cannot access the life-saving drugs so many of us take for granted.

Still looking outside my bubble

November 10, 2016 in Advocacy, Awareness, Diabetes, Reblog | 2 comments

A couple of weeks ago, I spent a very uncomfortable hour talking to someone who was telling me that the very idea of sending any sort of health aid to another country was horrendous because the situation here in Australia is so dire. They went on to say that the refused to support programs helping people in other countries access insulin and diabetes supplies because that was the responsibility of the government of that country.

I’ve thought about the conversation a lot. And then today, on my TimeHop app, this post from last year came up. I wish I had remembered these words then because I sat there mute after trying to explain why it’s important that we help others who are not as fortunate as we are here in Australia and being cut off and told I didn’t know what I was talking about. I decided that there was simply no point in trying to argue.

So today, I thought I’d share the post. Remembering to look outside our own bubble is always important, And today -especially today – it seems even more critical.

_____________________________________________________________________________________

I speak a lot about the challenges of living with diabetes. Sometimes, the challenges don’t directly relate to me, but I can still see and understand that the diabetes experience is different to anyone and one person’s easy-peasy-lemon-squeezy is another person’s anxiety- and stress-inducing concern.

One of the things that perplexes and annoys me is people who are unable to see diabetes outside of their own bubble. Frequently these people fail to see that just because they don’t need information about <insert topic here> that doesn’t mean everyone has access to or an understanding of it.

Sometimes, when I was involved in running an activity or speaking about a topic at an event, people say that they have never had any problems with that, so why would we speak about it – completely ignoring the fact that for lots of people living with diabetes this is an issue that is of concern.

I ‘work in diabetes’ (which sounds ridiculous, but you know what I mean) and the last person’s diabetes that gets considered when I am at work and thinking of developing programs is my own. If I thought, for one minute, that my experience of living with diabetes mirrors most others, then I’d be utterly naïve and not doing my job. That’s why working and engaging with, and listening to as wide a range of people affected by diabetes as possible is critical to delivering services that are of use.

(Because, let’s be honest, if it really were all about me, I’d spend lots of time and effort working with the leather crafters at Hermes to help me design a perfect diabetes bag. Because: shallow. And lots of stuff.)

And you know if you just rolled your eyes at that last comment because you have found (or designed) the perfect bag and think it is waste of time to speak about it because it doesn’t affect you, then a) stop it, and b) can you tell me where to get one? Thanks.

With World Diabetes Day next week, it’s a great time to think about how others deal with diabetes, what they know, what they don’t, what their concerns may be.

If I only cared about what was going on in my diabetes bubble, I wouldn’t write so much about campaigns like #Insulin4All. You can read all about the campaign here, and my post about it during the lead up to 2014’s WDD.

I have never had trouble accessing insulin. But that doesn’t mean that I don’t care about those who do.

So…I had a NEEDLE IN MY EYE!

November 9, 2016 in Complications, Diabetes, Eyes, Family, Healthcare team, Real life | 15 comments

Yesterday, I had my annual eye screening. In an endeavour to calm me as much as possible from the anxiety I feel about this annual check-up, I made plans so that it would be the same as my check every year. My dad drove me there, sitting in the waiting room while I faced my fears in the doctor’s office.

I have been going to the same eye specialist centre for 15 years. I’ve seen the same ophthalmologist the whole time and his orthoptist has been the same absolutely delightful woman. She does a super job of calming me down, checking my vision and eye pressure and popping in the dilating drops. And then she sends me off to see her boss so he can have a look at the back of my eyes.

‘The main event’ part of my appointment is always fairly similar and I am fine with that. I know what to expect, I know the order of things and I know that I will have an opportunity to talk about anything concerning me.

We start with my ophthalmologist asking me how I have been and what has changed in my life over the last 12 months. I mentioned that I had changed jobs and we had a chat about that for a moment.

Then he asks if there have been any changes with my diabetes in that period and is always pleased (as am I!) when I report on the mostly boring nature of my diabetes. At this point, he usually asks about my family and any recent travels.

And then, the eye exam. The lights go out, I rest my chin on the contraption and he spends a good 10 to 15 minutes having a look at my eyes, explaining what he is looking at, what he is looking for and, most importantly to me, what he can see.

Or – what he can’t see. I am always hoping that he can’t see any diabetes-related eye disease.

‘Remind me how old you are, Renza,’ he said as he turned the lights back on.

‘I’m turning 43 at the end of the month,’ I said, blinking furiously as my dilated pupils tried to get used to the suddenly bright overhead lights.

‘And you’ve had diabetes for 18 years, right?’ he asked.

‘Eighteen and a half…,’ I said.

‘There is absolutely no diabetes-related anything going on in your eyes, Renza. It is all good news from me. You should be really pleased.’

‘I am,’ I said, nodding. I could feel my breathing starting to return to normal, unaware until that moment that I’d been holding my breath.

‘Okay. So…I’ll see you in a year. Of course, come back sooner if there are any changes. But first, is there anything else you wanted to mention?’

‘Oh – yes!’ I suddenly remembered that I had written myself a note in my phone. ‘I have noticed that my eyes have been really watery lately – maybe in the last couple of months. I can’t go outside without tears streaming down my face. It’s a little better if I am wearing sunglasses, but not always.’

‘Let’s have a look,’ he said. ‘It could be a blocked tear duct.’

‘Wait – what are you going to do…?’ Panic was setting in again!

‘Just tilt your head back for a second and I’ll pop some drops in first. And then I’ll do what I need to do.’

I knew that it was not the moment to ask exactly what was going on. I also knew that he has been my eye specialist for 15 years and knows me and my anxieties. And I also know that I trust him completely! I could hear paper rustling – the sound of something sterile being freed from its package.

‘Renza, I want you to look right up over your head for a second.’ At that point, I saw the syringe. ‘Okay – in a second, you are going to feel some saline running down the back of your throat. Nothing to worry about.’

And at the moment I tasted the salt I realised that THERE WAS A NEEDLE IN MY EYE. AND I WAS AWAKE. And I was not screaming. Or in any pain.

‘That one is fine,’ he said. ‘Let me check the other one.’ And he repeated the procedure, again announcing all to be okay. ‘It’s all fine – nothing to worry about at all.’

‘Great,’ I said. ‘Um…did you just stick a needle in my eye?’

‘I will never say,’ he said, smiling at me.

‘I think we need to acknowledge this new phase of our relationship. I feel I have really grown as an eye patient.’ I said as I gathered up my bag. I thanked him for his time – but really I was thanking him for the awesome ‘report’ and the lovely way he deals with me.

‘I’ll see you next time, Renza. Everything is looking really good.’

I walked out of the room. My dad looked up from the magazine he was reading and stood up. ‘All okay?’ he asked. I nooded. ‘Told you!’ he said – just like he always does.

I smiled. ‘Guess what? I just had a needle stuck IN MY EYE.’ I told him. ‘Did you hear me? A NEEDLE STUCK IN MY EYE.’

I settled the account and made an appointment for the end of next year at the front desk and we got into the elevator. ‘I just had a needle in my eye,’ I said, this time quietly and mostly to myself.

‘And my eyes are all clear.’

We walked to the car. All done for another year.

14963236_10154688301495789_697187018739568242_n

Pupil still slightly dilated. But an all-clear from the ophthalmologist.

Middle of the night conversations

November 7, 2016 in Diabetes, Language, Lows | 1 comment

Fade in to bedroom in middle of the night…

Diabetes: Helllloooooo! It’s me; Diabetes!

Me: Piss off!

Diabetes: Rude! You don’t like me very much, do you?

Me: Um…no…It is 3am and you have just woken me up. I guess you’re okay. I mean…I guess.

Diabetes: Pfft. You’re a lousy liar. I hear the words you use when talking about me. We should discuss your language. You swear like a trucker a lot of the time.

Me: My language? You want to talk about my language? It’s 3am. I’ll tell you what you can do with my fucking lang….

Diabetes: Yeah – that’s what I’m talking about…

Me: Well this has been fun. I might go back to sleep now.

Diabetes: Oh – I’m not done yet. We have so much to catch up on. Let’s talk.

Me: About what…?

Diabetes: I was wondering… Do you think there is any way that you could like me? Any way at all? What would I have to do?

Me: Is leaving me alone and finding a way for my beta cells to start working again an option? Could you do that for me?

Diabetes: Not so much.

Me: Okay. Is just being in the background and not bothering me and responding the same way to the same things each time an option?

Diabetes: No. Not really.

Me: Um…is never again waking me in the middle of the night a possibility?

Diabetes: Again, no – I get lonely and it’s fun to have you around when it is dark outside.

Me: Okay. Then to answer your question: no. I don’t believe there is any possible way that I could like you. In fact, I think that I will pretty much dislike you for the rest of my life. Which I hope to be a very long one. We have nothing in common and you have no redeeming qualities. So…

Diabetes: I’m sad to hear that, my friend…

Me: I am not your friend.

Diabetes: Whatevs.

Me: That is not a word.

Diabetes: Totes is.

Me: It is not. And neither is ‘totes’ unless you are referring to a bag.

Diabetes: You know; you’re actually kind of annoying.

Me: Pot. Kettle. Black.

Diabetes: Use verbs!

Me: I had no idea that my diabetes was so into grammar and language.

Diabetes: Yeah – I love it. And punctuation.

Me: You do?

Diabetes: Yep. I do.

Me: Wow. That’s kind of interesting…

Diabetes: It is, isn’t it?

Me: I love punctuation, too.

Diabetes: I know. I can’t decide if my favourite punctuation symbol is the interrobang or acclamation point.

Me: Oh – they are two of my favourites as well! … So, what else do you want to say to me?

Diabetes: Oh – just this…You’re low and probably should do something about it.

Me: What the fuck‽

Diabetes: Renza! Language! Drink some juice. (But excellent use of an interrobang!) … Also, if you find yourself talking weird punctuation marks with your chronic autoimmune health condition – I’d suggest that you think about what could be going on with your glucose level. And then do something about it.

Renza: Do you know what this punctuation mark is:

sarcmark

Diabetes: No. What is it?

Renza: It’s a sarc mark. And this one? This one is a snarc mark.

snark-mark Renza: You should consider pretty much everything I ever say to you to conclude with one of those – take your pick.

Diabetes: That’s not very nice.

Renza: Neither are you.

Diabetes: Drink some juice, you moron.

Renza: Don’t tell me what to do! Great; now I’m wide awake.

Diabetes: And it would appear my work here is done. See ya…

Fade out to sound of expletives, all punctuated with a certitude point.

certitude-point

Five years – ten at the most

November 4, 2016 in Awareness, Diabetes | 1 comment

It’s day four of Diabetes Awareness Month and I am feeling a little burnt out. Already.

My social media feeds have been washed in blue; it’s Friday and I am in head-to-toe blue, and my kid went off to school today wearing blue pom poms in her hair and a blue circle pinned to her school shirt.

My inbox is full of requests to promote a new awareness initiative or to fund a new campaign, and I am preparing for talks I am giving throughout the month where I will be speaking about real life with diabetes, or the importance of including people with diabetes in the development and running of programs and services for us.

Buildings will be lit up in blue, the media will be (mis)reporting diabetes and there will be blue everywhere. Blue. Blue. Blue.

Yeah. It’s Diabetes Awareness Month.

I’ve been thinking back to my diagnosis and how I thought my life with diabetes was going to turn out. I was promised a cure when I was diagnosed eighteen and a half years ago: ‘There will be a cure in five years – ten at the most.’ I believed it. I really believed it. And I figured that I could manage this diabetes palaver for five years – ten at the most.

Where is my cure?

I write about progress and my excitement at diabetes technology and how it has absolutely changed my life. In my (relatively short) time with diabetes I have been the beneficiary of these new technologies, of better insulins, of smart devices, of support programs, of outstanding education. I am one of the lucky ones.

And yet my cure seems as elusive today as it did when I was diagnosed – in fact more so, because now…now I don’t believe it will be here in five years – ten at the most.

I feel ungrateful even asking for it – I have access to everything I need to manage my condition. My life with diabetes is good. I even had a kid with this stupid condition doing everything in its power to stop that happening. And, let’s be honest, I’ve made a career out of it too.

I write here about the trials and tribulations of this condition, but I know that I am mostly preaching to the converted – those who know what I mean when I write words of daily frustrations, celebrations, victories and annoyances. And that’s okay. You are my tribe and I love you hard – I really do.

But those outside our world don’t know it, and they see me and think it is all okay.

It’s not. It’s not okay for me in my ridiculously privileged diabetes world. And, even more so, it is not okay for people who die because they can’t access insulin. It is not okay for people who struggle so much with the daily tasks of this condition that they can barely raise their head from the pillow. It is not okay for those who feel so stigmatised by diabetes that they refuse to tell anyone about it for fear of retribution and shame. It is not okay that diabetes is a punchline for every piss-poor comedian.

And it’s not okay that there is no cure. I can close my eyes and instantly be transported back to the room where I had my first insulin injection, and I can see the endocrinologist and hear his voice and the words I no longer believe. ‘There will be a cure in five years – ten at the most.’ No. No there won’t.