You are currently browsing the category archive for the ‘Complications’ category.

There is something to be said for the comfort of routine. Yesterday, I had my annual eye check. And like clockwork, it played out the same way it always has.

Just like always, the week before my appointment, I received a reminder message from doctor’s office. That cued the call to my dad to lock him in for chauffeuring and morale duties.

Just like always, a little part of the back of my mind was occupied with the upcoming appointment and a series of ‘what if’ scenarios played out.

Just like always, the night before my appointment, my anxiety levels were heightened. I tried to alleviate them with a bit of twitter humour.

Just like always on the day of the appointment, Dad picked me up and just like always, I told him how nervous I was. ‘Twenty years of diabetes now, dad.I’m worried this might be the appointment where the news isn’t all good.’

And just like always, he said ‘Just wait and see. There’s not point worrying before you see your doctor.’ His morale boosting comments, just like always, right on point.

Just like always, I nervously waiting in the second waiting room to be called in to the first appointment.

Just like always, the orthoptist had me read from a chart and put drops in my eyes and sent me on my way to the next waiting room. And just like always, my vision blurred and my heart rate increased.

Drops in; vision blurring. Waiting…

Just like always, my dreamy ophthalmologist called me into his room. (Dreamy because he’s lovely to look at. But more dreamy because he is just so damn kind to me in my ridiculous nervous state). ‘Are you well,’ he asked, just like always asks, and I realised that I have not always answered, ‘Yes. So well…’

Just like always, he said: ‘Your vision and eye pressure look good, Renza. No changes at all since last time.’

Just like always I allowed myself to smile a tiny bit. But no too much. Because the reason we were really there hadn’t happened yet.

Just like always, he turned down the lights in the room and shone an almost painfully bright light into my eyes. He asked me to look this way and then that way. He looked at the front and back of both of my eyes.

And just like always, when he’d looked for all he needed to look for, he turned the lights back on and smiled at me. ‘There is no sign of retinopathy or any other diabetes-related eye problems. Your eyes are great.’

Just like always, I breathed again. I smiled. Really smiled. ‘I’ve had diabetes for twenty years now. Today’s news has made me really happy.’ I said. And I thanked him for giving me such good news.

Just like always I wandered back down the corridor, feeling far lighter. I paid the bill, I found my dad.

And just like always, he looked at my beaming smile and said, ‘I told you so. Just like I always do.’

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Step right this way for some diabetes snapshots, information, and inspiration.

URGENT REQUEST TO PEOPLE IN AUSTRALIA FROM INSULIN FOR LIFE 

Insulin for Life Australia is in urgent need of Lantus insulin. If you have any no longer needed Lantus (or any other insulin, but Lantus is the priority right now), please consider sending it to Insulin for Life, Australia. More information available here. (If you are not in Australia, please use the same link and request information about where you may be able to send your donated insulin.)

Women’s work

International Women’s Day may have been a couple of weeks ago, but I loved this piece from the Diabetes Mine team paying tribute to women in diabetes.

Researching DIYPS

While we’re talking women in diabetes, this wonderful profile of Dana Lewis showcases not only her trailblazing work in DIYPS, but also how she has moved into researching the technology.

Diabetes devices overview

KQED Science ran this great overview of diabetes devices, including a well-balanced summary of current sensor-based glucose monitors. The piece features another legendary woman in diabetes, Melissa Lee.

Diabetes UK Conference wrap up

Last week, Diabetes UK held their diabetes professional conference in London. They extended the conference by as day to host the Diabetes UK Insider event for people with diabetes which provided a summary of some of the sessions from earlier in the week. (You can catch up on twitter by checking out #DUKPC and #DUKPCInsider tags.)

There was some stellar tweeting from both events from a few twitter stars and the blog posts are trickling through now.

You can read this one from Ros at Type 1 Adventures.

And Ascensia smartly engaged Grumpy Pumper once again to write updates for them, and you can find them here.

Four years

Kim Hislop is a pretty cool woman and recently she wrote a beautiful piece about the last sixth months, which she says have been some of the most difficult times of her life. Four years ago, Kim received a kidney transplant from her mother-in-law and, unfortunately, in September last year, the transplanted kidney was rejected.

Read Kim’s story, including how she is feeling about starting dialysis and what she hopes for her future. She is a truly wonderful person and has been such a wonderful advocate for sharing stories about living with diabetes complications. I really hope she keeps writing.

Please, if you are not already an organ donor, please consider becoming one. Information about becoming an organ and tissue donor in Australia is available here.

Pre-pregnancy planning study

Are you a woman with either type 1 or 2 diabetes aged between 18 and 40 years of age living in Australia? Then Helen Edwards wants to hear from you!

As part of her PhD research, Helen is developing a tool to determine how prepared women with diabetes are for pregnancy. The idea is for the tool to be used by diabetes HCPs working with women with diabetes contemplating pregnancy.

If you are interested in participating, please get in touch with Helen at helen.edwards@adelaide.edu.au.

Just Talking

Last month, I sat down with Christopher Snider and had a chat for his Just Talking podcast. By ‘sit down’, I mean that I was at home in Australia and it was the weekend and I was drinking coffee because it was crazy early, and he was at home in the US and it was … well, who knows when it was – I’m not got at time zones.

We chatted about weird accents (I think we were referring to mine), the Hemsworths and Nicole Kidman, #LanguageMatters (because it does) and other diabetes stuff too.

You can listen to it here.

#GBDOC

I’ve been given the keys to the GBDOC tweetchat bus for this week. I’m talking about including people with diabetes in … well … everything to do with diabetes. I suspect the #NothingAboutUsWithoutUs hashtag might get a bit of a run alongside the #GBDOC tag. Please join me at (UK time) Wednesday at 9pm (which is Thursday at 8am AEDT, because we are the future).

Aims for the chat: don’t use too much Australian slang; limit swearing. I should be right about not using slang…

Spare a Rose wrap up

In case you missed it, the final tally for this year’s Spare a Rose, Save a Child campaign is in!

Thanks to everyone who donated and shared information about the campaign.

New year, new jumble. And lots of saved links from the last few weeks to share.

#OzDOC 2.0

Did you know that after OzDOC had it’s ‘final’ tweetchat at the beginning of December last year, it’s had a reboot and is now continuing to go at a great rate. David Burren (AKA Bionic Wookiee) kicked off the chat but is looking for people to volunteer to the moderators’ roster. There’s a brand new Twitter account to follow (@OzDOC_host), but the #OzDOC hashtag continues to shine brightly.

Same #OzDOC time, same #OzDOC channel. (i.e. Tuesdays at 8.30pm AEDT)

And while we’re talking tweetchats…

…make sure you keep an eye out on the #GBDOC tweetchats, which also had a bit of a restart last year and are going absolutely brilliantly. Follow @GbdocTChost for topics and moderators.

Now is a great time for Aussies to participate in #GBDOC because with the time zone difference, the chat is on Thursday 8am AEDT…which is actually quite pleasant. (It all goes to pot and becomes more difficult when daylight saving kicks in/out in respective hemispheres in coming months, but for now, it’s certainly manageable!)

Jane’s profile

It’s no secret that I’m a huge fan of Professor Jane Speight and I make no apologies for mentioning her so frequently on this blog. She is truly a champion for and of people with diabetes and her pioneering work on diabetes and #LanguageMatters, and social stigma are changing the landscape for those of us living with diabetes.

Last week, a profile of Jane and her work was published in The Lancet. Congrats, Jane. I can’t imagine a more worthy recipient of this attention. Please keep on keeping on. I for one am very grateful to have you on our side!

Read the article here – it’s free, but you will need to register/log in to access it.

(Click photo for source)

Dear ‘patient’

I was really interested to read this BMJ Opinion piece about medical letters, with the writers suggesting that instead of addressing ‘report letters’ to referring (and other) doctors and HCPs, that they should be addressed directly to the person, CCing in the doctor who would ordinarily have been sent the letter.

I love that idea! My endo generally copies me in on anything she sends out to my other HCPs to keep me in the loop, but I think that actually writing directly to me is even better.

HCPs would need to completely reconsider the language they adopt, the terminology they use and the overall tone of the communication, and I believe that there is nothing that should be shared with another HCP about me that shouldn’t be shared directly with me.

Interesting idea. And interesting to see if it has legs…

Writing for Grumps

After writing for me a few weeks ago, I returned the favour and wrote a post for The Grumpy Pumper. (I think the deal he made was something like ‘I’ll show you mine if you show me yours’, so I had to come up with the goods.)

This is all part of Grumps’ attempts to get people with diabetes speaking about #TalkAboutComplications in an open and honest way to help reduce the shame that seem to go hand in hand with a complications diagnosis.

Get ready for Spare a Rose spam

This year’s campaign is about to kick off. And if you want to know why I support this campaign, here’s just one reason.

Hospital admissions and T1D study

Rebecca Munt from Flinders University is currently enrolled in a PhD at Flinders University and is looking for participants in her research.

The focus of her study is to explore the experiences of self-management for adults with type 1 diabetes in the hospital setting (when T1D is not the primary admission diagnosis). If you’re interested in participating in Rebecca’s study, have type 1 diabetes, are over 18 years of age and have been admitted to hospital within the last two to five years (not for diabetes), please call Rebecca on (08) 8201 5749 or email rebecca.munt@flinders.edu.au

(The project has Social Behavioural Research Ethics Committee approval from Flinders University.)

Future of medical conferences

I have been very vocal in recent years about the shortcomings of diabetes conferences, specifically the lack of involvement and engagement of people with diabetes as part of the planning, running and presenting of the conference. So this piece really resonated about why medical meetings need a revamp, and some ideas for what could be done differently.

(Click for original tweet)

Because #NothingAboutUsWithoutUs.

Does the story we know and love about Banting need a rewrite?

I was fascinated to watch the short documentary shared in this story which suggests that the frequently-told story of the discovery of insulin is missing out a critical part.

It was the best of times, it was the worst of times…

This blog post by Sue Robins detailing two vastly different medical appointments is compelling – and quite heartbreaking –reading.

More D Merch

Totally true!

Click image to get your own!

 

Towards the end of last year, I wrote about some things happening online trying to encourage people to openly and freely speak about being diagnosed and living with diabetes-related complications.

When conversations about diabetes complications are brought into the public domain, often two things happen.

Firstly, people start to talk. That whole cornerstone of peer support – reducing isolation and sharing stories – flings doors and windows wide open, and people, often gingerly at first, start to offer their own experiences. Inevitably, someone will say that they don’t speak about their complications because they fear the judgement that will follow. Or that they believe they are the only one their age facing complications because they have never met another person, or read a blog post from another person sharing a similar experience.

Secondly – and most damagingly – there is judgement. And it comes in spades, often sending some of those who had started to open up retreating back into the depths of diabetes taboos. This is not helpful for anyone.

So I wasn’t surprised when, during a useful discussion starting online about living with diabetes related complications – which resulted in some people willingly talking about their own experiences – the horribly judgemental comments started infiltrating the conversation.

I shared this post that I wrote almost five years ago about why we need to reconsider the way we speak about diabetes complications as I thought it was relevant to the current online conversation. In fact, everything I wrote in that post was still true because diabetes continues to be a terribly stigmatised condition and, within that, those of us living with complications seem to face additional stigma and judgement.

If for one second anyone doesn’t believe that statement, here are just some of the comments that I received (on LinkedIn and Twitter) after sharing the post:

‘If considering that many people who are type 2 diabetic quite simply exercise too little and eat too much fat…… which has immense financial consequences for the provision of healthcare…….. how else do you propose to get these people to lose weight and stop emburdening (sic) themselves on our NHS? If you take away the need to shame them you take away the most powerful way of making them take responsibility for their health.’

‘Sorry Renza but if we get complications of diabetes then we have failed. We are each responsible for own health and must try to maintain it at all cost.’

‘Diabetic complications do not happen with ‘perfect’ blood sugars. I agree that we must be supportive and sympathetic and the insulins available don’t help but it’s still the patient’s responsibility and not the doctors. Sorry if this doesn’t bode well with you.’

Is it any wonder that people are reticent to speak about developing complications if people are thinking like this?

I have written before that I believe diabetes has an image problem, because I can’t think of any other health condition that, if a treatment does not get the desired outcome, the person living with that condition is blamed. I have never heard someone being blamed if the cancer for which they are being treated does not end up in remission. I don’t know of anyone with rheumatoid arthritis who is blamed if their pain increases or their mobility decreases. I’ve not heard of someone with psoriasis being accused of not caring for themselves if their skin flares up.

But all bets are off when it comes to diabetes and fingers are pointed fairly and squarely in the face of the person living with diabetes if they develop complications.

Diabetes complications happen. It is, unfortunately, a reality for many people living with diabetes. I’m not trying to be negative or scare people, but we know that the longer we live with diabetes, the more likely we are to develop complications.

In this post, The Grumpy Pumper says: ‘Complications are a hazard of what we have. Not a failing of what we do.’ Maybe if we take that as the starting point we can take away the blame. And maybe if we take away the blame, we break down the stigma. And maybe if we break down the stigma, we can start having a real discussion about how we treat complications if they develop, and get to treating them.

And maybe if we stop thinking that developing diabetes and anything that happens after living with it is a shortcoming we can stop feeling so judged and shamed, because others will stop judging and shaming us.More to read on this topic:

Melissa Lee wrote this piece.

Riva Greenberg shared this one.

Sarah K from Sugarbetic wrote this. 

And this from Mel Seed.

 

‘Grumps? Grumps? When are you writing for me?’

Last year, The Grumpy Pumper wrote a couple of posts for me in what was going to be semi-regular series called What Would Grumpy Do? Actually, the idea that it was going to be a semi-regular thing was news to Grumps, and because he doesn’t like to be told what to do, it’s been over a year between posts. 

Earlier in the month we were in Abu Dhabi at #IDF2017 together, and every second thing I said to him was a variation of ‘When are you writing for me again? Grumps? Grumps? Grumps? Hey, write something. Now! Grumps?’ As it turns out, four days of me asking the same thing yields results. Who knew?

So here’s Grumps’ recent diabetes complications story. and his efforts to get people talking about complications to reduce stigma.

Off you go, Sir Grump-a-lot…

____________________________________________________

‘I’m afraid you have a diabetic complication Mr Pumper.’

(I’ve had the language matters talk, don’t panic)

How would you feel if you heard this? What would you do?

Well, at that point in time, I asked myself: What Would Grumpy Do?

To set the scene…

I had a bloody great hole in my foot.

I was at the podiatrist.

So, let’s face it, I did not fall off the chair in shock.

The conversation went something like this:

Grumps: What kind of complication? You can tell me straight. It’s my foot, right?

(Cue eye rolling by podiatrist. I don’t blame her. Dealing with me is a challenge at the best of times.)

Podiatrist: Yes. It’s an ulcer.

Grumps: Caused by the blister I told you about that burst, healed over but must have had some crap in the wound?

Podiatrist: Yes, that’s it.

Grumps: So it’s caused by my diabetes then?

Podiatrist: Oh no, not the blister, but your neuropathy means it will take longer to heal.

Grumps: So that big hole in my foot isn’t a complication of my diabetes; it’s complicated by my diabetes?

Podiatrist: Well. I guess so…

Me being me, I don’t care what it’s called, nor how I’m told, because if I’m totally honest it doesn’t bother me. Not much does. I’ll take whatever comes, deal with it and move on.

But I wanted to make a point. Things can be viewed very differently depending on who you are and how you feel about things. And how you feel about things can depend on how things are worded – that can massively influence things.

Anyway, to cut a short story long, a precautionary X-ray and a consultant later it was confirmed that there was no bone infection, which was good. It also showed that about a year ago I had broken two bones at the top of my foot and also smashed the joint in one of my toes – fuck knows how. (I remember a lot of swelling in the foot and bruising.)

Instead of healing, the bone had degenerated and gone ‘chalky’. Over time that hardened and went back to solid bone (as I understand it). So the toe joint isn’t a joint now, and the foot is slightly warped (just like my sense of humour). The Charcot (the chalky thing) is no longer active, but I am at risk of it happening again if I get another trauma to the foot.

All of which is good!

Why the hell would I think any of that was good?

The hole in my foot uncovered all the other stuff, so to be honest, I’m glad I got it. If I hadn’t, I would still not know. The Charcot isn’t active so there is nothing that needs to be fixed. I now know that if I get similar symptoms, or become aware of any trauma, I need to get it looked at ASAP. And I know the route to make sure that happens.

So, all good in my book.

I went home and did what any self-respecting Grumps would do: I waited until it was dinner time in the UK and then posted a gross picture of my foot for all to see. I described the issue and raised the subject of my complications.

This sparked a very good online discussion about compilations with other PWD talking about theirs and others seeing that they are not the only one with them. And there is no shame in having them. Sharing experiences and taking comfort from others; for me, that’s what peer support is about.

We are all in the same boat. It’s just that the boat is full of holes. If we try to bail out the incoming water on our own, at some point we will drown. It we help each other; we can keep our heads above the water.

I am not ashamed about my complications. I never will be!

I will Grumpily tell everyone that wants to listen, and post disgusting pics that pop up on your social media feeds just as you are about to tuck into your favourite meal.

I’m not sorry about this!

Complications are a hazard of what we have.

Not a failing of what we do.

#TalkAboutComplications

Live Long and Bolus

Grumps

Grumps’ snazzy new footwear.

Want more from The Grumpy Pumper? Check out his blog here. And follow him on Twitter here

A recurring theme throughout last week’s ADS ADEA meeting in Perth was the need to manage expectations. I think, in general, we do a really lousy job of this in diabetes.

We’re told that can expect to live a ‘normal life’ after a diabetes diagnosis, when that’s not necessarily the truth.

We’re told we can expect to eat whatever they want, when really, the effort that goes into calculating medication doses depending on the nutrient value of our foods is hard and it may be easier for some to actually limit food choices to make things a little easier.

We’re told to expect a cure in five years’ time, when the truth is that a cure is not even on the distant horizon.

We’re told that we can expect new technology to significantly reduce the burden of living with diabetes, when the reality is that sometimes, it’s more – not less – work.

We’re told to expect person-centred care, when, really, our health system, is not designed to cater for the individual needs of people living with diabetes.

We’re told that emerging technology will be fully automated, smart and cure-like, but we are not told that there will still be human-input necessary and that the devices are not as smart as a functioning pancreas.

We’re told that if we keep our A1c below 7% we can avoid complications, and yet, there is no guarantee, and some of us do develop complications despite an A1c regularly hitting that magic number.

We are told that if we count carbs and dose the right amount of insulin at the right time, we can keep our glucose levels in range, often neglecting to be told that there are a lot of other factors at play.

We are told all this, and then, when these expectations are not met, we are told we’ve failed. Or we are disappointed.

Here’s the thing. The tools are actually really great. Our health system here in Australia is mostly terrific. The majority of our HCPs genuinely do want to give us the best care they can. We don’t need to oversell things as much as we do.

Our expectations are being set so realistically high, that it’s impossible to meet them.

So, THIS is what I would like to say about all the things I’ve covered above to help manage expectations:

Your life will be different after a diabetes diagnosis. But that’s okay. Your new normal is going to be different to your old normal, but hopefully, there will be very things that diabetes will prevent you from doing. Acting like a pancreas is not really normal, but you can do it!

Yeah, you can eat whatever you want. But it’s undeniable that certain foods are harder to manage after your pancreas decides to go on strike. Find what works for you – and that can change. But do be prepared for food to become something that can be a little fraught because you may find that some of your most favourite foods are a little difficult to deal with.

Researchers are brilliant and amazing and the advances in diabetes management are actually quite mind blowing, but a cure? We’re nowhere near that yet. Keep up to date with everything and try to mine through it to work out what is relevant for you. Keep getting excited about management and tech advances – but do keep it in perspective. (Also – consider the source. I promise you that the Channel 10 news or Buzzfeed is NOT going to be where you learn that diabetes has been cured forever.)

You are going to have a lot that you will want to know and work through, and possible a variety of healthcare professionals to see. As wonderful as it would be to have someone to coordinate it all for you, you’ll have to put in the leg work to find the right team, the right service and the right people. And then, once you’ve found them, it’s still up to you to direct what you need. Otherwise you might find yourself at the mercy of a system that is not really going deliver exactly what you need to get the most from it.

You may have heard that in the US there is a (hybrid-closed loop) pump/CGM combo. Some are calling it an artificial pancreas. It’s not. The tech is incredible, but it’s not fully automated. It still requires calibration and it still requires operator input. This is not me being negative, because the tech is exciting. It’s me being realistic about the level of automation

No new devices are going to completely remove the load diabetes adds to your life, or your involvement in their operation.  Insulin pumps need buttons pushed; CGMs need calibration, food needs to be considered. Full automation may be the goal, but it’s a while off.

An A1c of 7% or below will indeed reduce your risk of developing diabetes-related complications and there is a lot of evidence to support that. But it doesn’t eliminate the risk. That’s the annoying and somewhat unfair reality of diabetes. Unfortunately, it’s the reality. Obviously, do what you can to manage your diabetes as well as you can. But don’t expect that a number is a guarantee of anything.

Carbs and insulin are only part of the equation. How you’re feeling emotionally, illness such as colds and flus, hormones, nutrients other than just carbs, the phase of the moon (well, maybe not) … all these impact on your numbers. And they change. Don’t expect that there is an equation that will work all the time.

In life, we’re often told to expect the unexpected. But in diabetes, the unexpected is often only that way because what we have been told to expect is unrealistic. If we were told the truth, and provided with realistic expectations from diagnosis – and throughout our diabetes lives, perhaps we wouldn’t feel that we’re constantly falling behind and failing.

Here’s me and my boss talking about expectations in technology. 

Disclosures

Roche Diabetes Australia has covered my travel and two night’s accommodation for my stay in Perth as I am a presenter at the Roche Educators Day (RED). There is no expectation from Roche that I will write anything about the RED, but I expect I will because it’s always such an interesting and enjoyable day!

The remainder of my time in Perth is part of my role at Diabetes Australia.

As someone who is rather passionate about the words we use when we are talking about diabetes, I was framing how I would respond in my endo appointment when I finally received my pathology results yesterday. ‘Path results are not a moral compass, Renza. They give you a snapshot of data and that is information to help you inform treatment decisions moving forward. Nothing more. Nothing less. Your value as a person is not based on the numbers on the paper.’ I repeated the words rhythmically over and over and over again.

And maybe, I almost started to believe them.

I walked into the office and sat down anxiously. With a smile, she handed me sheets of paper. ‘You’ll be happy,’ she said to me. She told me my A1c as she knew that was what I would want to know first.

I flipped through the papers, the numbers starting to blur. I heard the A1c number but the rest stopped making any sense. ‘I don’t know what I’m looking at all of a sudden!’ I said to her.

Ah,’ she said. ‘Let’s start with your kidney check because I know that always worries you.’

We went through all the other results too. I was smiling and almost bursting into tears. ‘I’m so pleased,’ I said. ‘I’m so pleased with myself.’ And it’s true. I was feeling good about myself. And then I stopped taking.

Of course I was pleased; the results were all good. The numbers were in my target range. All of the worries I’d had for the last week melted away. But along with the celebration, I was starting to feel uncomfortable.

If the numbers were not where I wanted, my response would have been disappointment and, perhaps a little shame. I would not have been pleased with myself, instead chastising my lack of effort and feeling I was not enough. Yet, the effort would have been the same regardless of the numbers on the page.

Try as I might, I cannot divorce the idea that an in-target number is somehow connected to my value as a ‘good person’, which translates to an out-of-target number means I’m not. I fight this idea all the time. I write about it, I talk about it, I genuinely thought I believed it. Does the entrenched messaging we are told over and over again by some HCPs mean we actually should assess our own value as people based on numbers (a pathology check, BGL check, CGM trace, weight, blood pressure….)? Can we simply not move beyond the judgement?

I pushed away the thoughts and tried to just breathe with the relief I was feeling.

I walked out, paid the bill and walked to my car. I decided that I wanted to share the good news with Aaron, and I sent him a text with my A1c result. He responded perfectly with a gorgeous message…and then brought me Tim Tams for dessert.

And while we were munching on those Tim Tams, I said to Aaron, ‘You know, I’m really pleased with everything here. I’m pleased with my A1c, but the thing that relieved me more than anything are these five words…’ I leaned over and pointed to the paper at the five words I was referring to:


And I breathed out. Possibly for the first time in a very, very long while.

This is me standing next to my favourite poster drinking from an excellent coffee mug:

And this is a close up of said coffee mug:


And this is the back of same said coffee mug:


Decompressing today and grateful for this little reminder! I love homewares that give a pep talk.

More information about Bill Polonsky and the Behavioural Diabetes Institute here. And more from me about Bill Polonsky here. (And you can buy your very own version of this mug right here.)

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.

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

Today, I just want to follow up a little about one of the points I wrote about yesterday in my post about the event I attended on Tuesday evening about diabetes-related foot complications, specifically this point made my A/Prof Ramon Varcoe:

He explored how we make people with diabetes know this technique for saving limbs is available, and said that it is really, really important to inform PWD about it so that they can ASK for it and not just accept a diagnosis of requiring an amputation. He said that this was the group that could really drive change here, by demanding that they have the best treatment possible.

This had me thinking long and hard. I agree with A/Prof Varcoe here, but that is not really a surprise. I am so much about consumer-led healthcare, that I dream about it (sad, but true).

Mostly, I thought about it in context of my own diabetes care and how it has happened that I am such a DTech nerd. I decided after about two years of living with diabetes that I wanted to use an insulin pump. I really just could not get the hang of the MDI situation I had been put on at diagnosis and was the living embodiment of why Protophane was referred to as Protopain.

I went to an information session and heard a women speaking about how much she loved using an insulin pump and what a difference it had made for her quality of life. Afterwards, I spoke with her and by the end of our chat, was convinced. I wanted one of those! (Impressionable little thing, aren’t I? #MarketersDream) This woman would become my pump trainer and the only diabetes educator I have ever seen.

At my next endo appointment, I marched in with the research I had done, the questions I needed answered and an expectation that by the end of the consultation, I would leave with details of how and when and where I would be getting my pump. Ha, the naivety!

My endo was absolutely not keen for me to take the pump road, ‘You’ve not had diabetes long enough,’ he told me, which confused me no end, because it already felt like a lifetime. ‘I think we should talk about this again after you’ve had diabetes for about 5 years. Yes?’

Well, no. That was the last time I saw him. I spent the next six months endo shopping until I found one that (I was promised) would agree to helping me on a way to a pump. I walked in and made it very clear why I was there and he nodded straight away. ‘Yep – we can do that,’ and picked up the phone. And about three months later, I was a pumper. This particular endo and I parted ways not long after because I needed someone who was far more expert in the diabetes and pregnancy track I wanted to embark, but I have always been grateful that I found him and his open attitude to diabetes technology.

When CGM was launched into Australia, I spoke to my diabetes educator and asked her to fill in the required paperwork to get me sensing. She sent the form off the day we spoke.

And the same has happened when I have wanted to change or upgrade diabetes devices.

What I am trying to say is that this has all been led by me. So when A/Prof Varcoe spoke about the importance and value of connecting with PWD and telling them about these new vascular procedures to save limbs and prevent major amputations, it made perfect sense. He urged that we needed PWD to be the ones who, if told they needed to have an amputation, spoke up and asked for a second or third opinion, specifically asking about the very procedure he had just discussed.

This ground swell of action is what causes change, but we need to know exactly what to ask for. It’s far more effective to ask the question ‘Can my artery be revascularised? I understand there is surgery than can do that and may prevent the need for a major amputation.’ rather than just ‘Is there nothing more than can be done?’

So many of the people with diabetes I know are using particular drugs or devices because they have asked for them – not because they were recommended or suggested by their HCP. And this is why PWD need to have all the information. This is why device companies should be going straight to the consumer to share information, not expecting it to happen through HCPs. (I know that there has been discomfort from some HCPs at Abbott’s direct to consumer promotion of Libre – and the fact that PWD can order themselves without needing to see a HCP, but why would that be the case?)

But it is more than just making sure the information is there for PWD to know and see. It is a complete and utter reshaping of a system that a lot of times actually isn’t about empowerment. There are still too many ‘old school’, patriarchal attitudes that dictate care choices to the PWD instead of accepting and encouraging us to lead the way for our own care. I think things are changing, but I also think they are changing far too slowly.

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