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I bought a new t-shirt the other day. I saw it on Instagram and decided that I just had to have it. I’m not sure if it was growing up in a mostly female household; or the six years I spent in an all-girls school; or perhaps it’s the friends I am fortunate enough to be around a lot; or maybe the fact that most of the people I work with are dynamic women; or raising a daughter in 2018. Whatever it is, girls supporting girls, and women supporting women is the approach I have always tried to take in both my personal and work lives.

I guess my thinking is that we need to look out for and support each other because we know that outcomes for girls and women around the world are not always that great. And also, when women build each other up, and support and encourage each other, we are unstoppable!

I was thinking about this last night as I followed a Twitter conversation that all started after a somewhat sensationalist article in a newspaper about a bloke (sportsperson?) who, as it turns out, seems to have some diabetes-related neuropathy. As people shared the article and spoke about it, there were a couple of comments from people with diabetes about this person – another person with diabetes – ‘not looking after himself properly’.

When I started reading, I almost pinched myself to make sure that I hadn’t been sucked into some sort of void, and been dragged back to another time. Because this conversation has happened before – countless times. (A search through Twitter and this post pointed me to just a couple of those times.)

Diabetes-related complications and stigma. Diabetes-related complications and language. They go hand in hand. And along for the ride is judgement.

The complexity between diabetes, and developing diabetes-related complications is far too much for my little brain to comprehend. But I do know that there are no guarantees in diabetes. And I know that blaming people for whatever path their diabetes travels is not helpful in any way.

When someone suggests that another person with diabetes is ‘not looking after themselves properly’ there is a lot packed into that. It may not be intended, but that comment is so loaded with blame and shame and judgement that it becomes agonisingly heavy and, quite frankly, terrible.

To suggest that someone’s diabetes-related complications are the result of them ‘not looking after themselves properly’ means that essentially what is being said is that the person intended for this to happen. That they ‘brought it on themselves’. That they deserve to now have to face a future of diabetes-related complications.

To that, I say bullshit!

And, somehow, it is even worse when a comment like that comes from another person with diabetes, because if anyone should understand how harmful judgement can be, surely it is others with diabetes.

Supporting each other doesn’t mean just patting each other on the back and saying ‘good job.’ It is far more than that. It is acknowledging that we are doing the best we can at that moment time with what we have. It’s accepting that there are myriad ways of managing diabetes, and that people should have the right and the ability to choose the way that is right for them – even if we don’t think it is right for us. It is encouraging others’ efforts, cheering their successes and standing alongside them when things are tough. It is being happy for other PWD when they are doing, or being invited to do, great things.

It is not saying ‘You are not doing enough’.

We would be quick to say that it’s not okay for a healthcare professional to suggest that we are not trying hard enough. We don’t accept it when the media make claims that people aren’t looking after ourselves properly. We push back and say it is not okay when those without diabetes suggest that we are not doing our very best.

And in exactly the same way, it is not okay for other PWD to criticise one of our own because, honestly, we should know better. We should be on the same side. We should be building each other up.

It is completely unreasonable to expect that people with diabetes are going to agree on everything, and actually, who would want that anyway? Diversity of opinions is as important as diversity of experience. We all have our own ideas and ways to live with diabetes and there will be times that we completely disagree. That is all fine, as long as it is done with respect.

But even with those differences – differences that we can celebrate – the commonality of messed up beta cells should be what brings us together to be on the same side.

I could be Pollyanna-ish about it all and say that we should just be kind to each other, and that may be a good place to start.

Living with diabetes is fucking hard. We never, ever get a break from it. No matter how manageable our diabetes seems or how cruisy things may be at a particular moment, it is still always there. It doesn’t matter if we are scaling mountains or running marathons. Or living our dreams or travelling the world. Or getting up in the morning and going to work or school. Diabetes does not take a break.

Diabetes doesn’t take a break. But we can give each other one. No blame. No shame. Just an acknowledgement that we are doing the best we can. PWD support PWD. That’s what makes us stronger. That what makes US unstoppable!

P.S. If you really don’t agree with what someone is doing with their diabetes, you can say nothing at all. You don’t have to be critical. 

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The day before the Australasian Diabetes Congress (ADC) started, Ascensia Diabetes Care brought together a number of Australian diabetes blogger and advocates for the Australian Diabetes Social Media Summit, #OzDSMS – an event that promised to tackle some interesting and difficult topics in diabetes. The social media component was relevant for a number of reasons: the #TalkAboutComplications initiative that The Grumpy Pumper would be speaking about had been (and continues to be) driven on social media; and we really wanted to share as much as we could from the day on different social media platforms to ensure that those not in the room had a clear picture of what was going on and were able to join the conversation.

This planning for the event happened after one of those brainstorming meetings of minds and chance that sometimes occur at diabetes conference. I caught up with Joe Delahunty, Global Head of Communications at Ascensia at ADA because he wanted to speak with me about the launch of their Contour Next One blood glucose meter into the Australian market. And from there, plans for the social media summit were hatched. Joe isn’t afraid to look outside the box when considering ways to work with PWD, and his idea of a blogger event tied in beautifully with the ADC which would already have a number of diabetes advocates in attendance. We both knew that we needed a drawcard speaker. So he sent us Grumps.

One thing was clear from the beginning of the event’s planning – we wanted this event to tackle some issues that aren’t always readily and keenly discussed at diabetes gatherings. It is often a frustration of mine when following along industry-funded advocate events that the topics can seem a little frivolous, and there is the risk that they can seem a little junket-like because most of what is being shared is selfies from the attendees in exotic locations. (For the record, I am always really proud of the Aussie DX events hosted by Abbott because the programs don’t appear as though we’ve been brought together to do nothing more than celebrate our lack of beta cell function while swanning around Australian capital cities.)

The #OzDSMS program was simple – three talks plus a product plug. The discussion was going to be led and directed by the PWD in the room, but the Ascensia team wanted to be part of that discussion, rather than just sitting and listening.

Grumps led the first session in a discussion about how the whole #TalkAboutComplications thing came about after being diagnosed with a foot ulcer. Although he had prepared a talk and slides, the conversation did keep heading off on very convoluted tangents as people shared their experiences and asked a lot of questions.

For the second session, Grumps and I drove a discussion  focused on decision making and choice when it comes to diabetes technologies, with a strong theme running through that while the people in the room may know (and perhaps even use) the latest and greatest in tech, most people using insulin are still using MDI and BG monitoring as their diabetes tech. (For some perspective: in Australia, there are 120,000 people with type 1 diabetes and about 300,000 insulin-requiring people with type 2 diabetes. Only about 23,000 people use insulin pumps as their insulin delivery method. And there would not be anywhere near that number using CGM.)

This certainly is interesting when we consider that most online discussions about diabetes technology are about the latest devices available. We tried to nut out how to make the discussion about the most commonly-used technologies relevant – and prominent too.

Also in this session was a conversation about back up plans. While this is one of Grumps’ pet topics (he wrote about it in one of his #WWGD posts here), I think he met his match in David Burren, our own Bionic Wookiee. Between the two of them, they have back up plans on top of back up plans on top of back up plans, and over the week came to the rescue of a number of us at ADC who clearly are not as paranoid well organised as them.

Yes, there was talk of product. Ascensia’s Contour Next One meter was being launched at ADC, so there were freebies for all and a short presentation about the meter. (For a super detailed review of the new meter and the app that accompanies it, here’s Bionic Wookiee’s take.)

It makes sense that device companies use these sorts of events as an opportunity to spruik product, especially if it’s a new product. I am not naïve enough to ever forget that we’re dealing with the big business of medical tech, shareholders, ROI and a bottom line. But as I have said before, I WANT us to be part of their marketing machine, because the alternative is that we’re not included in the discussion. I’ve not drunk the Kool Aid – I’m fully aware they know that we will have some reach if we write about their product. I’m also fully aware that even though our bias should always be considered, the words remain our own.

I was super pleased that during the small part of the day dedicated to talking about the device, the presentation wasn’t simply about trying to blind us with all the fancy bells and whistles included in the meter. Instead, the focus was on accuracy. As I wrote here, accuracy will always be king to me, because I am dosing a potentially lethal drug based on the numbers this little device shows me. (Well, these days, I need it for when I calibrate my CGM which will then inform Loop to dose that potentially lethal drug.) Accuracy matters. Always and it should be the first thing we are told about when it comes to any diabetes device.

We moved to the Adelaide Oval for dinner for a final presentation by CDE and fellow PWD, Cheryl Steele, who also spoke about accuracy and why it is critical (this went beyond just talking about the new meter). I walked away considering my lax attitude to CGM calibration…not that I’ve necessarily made any changes to that attitude yet.

It was an exhausting day, but a very satisfying one. There was a lot of chatter – both on- and offline and it felt that this was just the start of something. Ascensia has not run an event like this before and hopefully the lively discussions and engagement encourages them to see the merit in bringing together people with diabetes for frank and open dialogue about some not-so-easy topics. While this event was exclusively for adults with type 1 diabetes, I think people with type 2 diabetes, and other stakeholders such as parents of kids with diabetes, would benefit from coming together to share their particular experiences and thoughts in a similar event setting, and potentially some events which bring different groups together to hear others’ perspectives.

As ever, I felt that this event (and others like it) go a long way towards boosting opportunities between PWD and industry, and I am a firm believer that this is where we need to be positioned. Thanks to Ascensia for allowing that to happen; thanks to others from far and wide who joined in the conversation – we were listening. And mostly, thanks to all the advocates in the room for contributing so meaningfully.

Disclosures

I was involved in the planning for the Ascensia Diabetes Care Social Media Summit and attended and spoke at the events Grumps attended. I did not receive any payment from Ascensia for this involvement or for attending the Summit. They did provide lunch and dinner, and gave me a free Contour Next One blood glucose meter. And an almost endless supply of coffee. Ascensia has not asked me to write about any of the work I’ve done with them. But I will, because I like to share and I know there are people who are desperate to know what was going on while Grumps was here!

Grumps was here as a guest of Ascensia Diabetes Care, who brought him to Australia to be the keynote speaker at the Ascensia Australia Diabetes Social Media Summit and to speak at other events about his #TalkAboutComplications initiative.

My travel and accommodation to ADC was funded as part of my role at Diabetes Australia. I would like to thank the ADS and ADEA for providing me with a media pass to attend the Congress. 

Last week, I spent a busy week at Australasian Diabetes Congress. I spent a lot of time with work colleagues, health professionals, the event organisers and researchers.

And I was fortunate because most of the time, I was around at least one of my peers. Between the #DAPeoplesVoice team, (Mel, Frank and David), other diabetes friends from home, (Ash, Kim, Gordon and Cheryl), and away (Grumps), there was always someone nearby who I could rely on to ‘get’ diabetes. (This is important always, but conferences have their own special challenges where diabetes mates are certainly appreciated to help keep some perspective!)

I have written countless times before about the power of peer support. I have also written that my peers have been the ones to have truly helped me through some of the most difficult diabetes situations I’ve faced – not necessarily with advice, but simply a knowing look, a nod of the head, or the words ‘me too’. Our peers help us make sense of what we are dealing with, provide us with endless support and help make us feel connected to others. And that’s important with a condition such as diabetes, because it is all too easy to feel that we are on our own.

Which is why I was so pleased to learn about ConnecT1ons, a new initiative from Diabetes Vic, which is looking to provide that support to another group within the diabetes world – parents of kids with diabetes.

It is undeniable that parents of children living with diabetes have their own brand of challenges. This was brought home to me again last week during the Diabetes and Schools Forum when parent of three children with type 1 diabetes, Shannon Macpherson, spoke about some of the difficulties she and her family have faced with her children in the school setting.

And again this morning, when I was speaking with a parent who is having a very tough time with her young, kindergarten-aged child. ‘Renza,’ she said to me, as she explained what was going on. ‘You have no idea. Having a child with diabetes is impossible because we cannot be with them when they probably need us the most.’  She’s right – I have no idea.

But other parents of children with diabetes would and do understand. And as they shared their empathy, they would also probably share some of the things they’ve done to help them through similar tricky situations.

Diabetes Victoria is looking to bring parents like this together for an event where they can meet other parents of children with diabetes. Plus, it’s a few days of respite from looking after their child with diabetes, while knowing their kid is safe (and having an absolute ball) at diabetes camp. What a brilliant idea all ‘round!

You can watch a video explaining the project here, and  hear from Jade, the mum of a young boy with diabetes share some of her experiences – and how parents just like her will benefit from ConnecT1ions.

As is always the case, finding funds for initiatives like this is a struggle, so today, Diabetes Victoria launched a crown funding campaign and is seeking to raise $15,000 to run ConnecT1ons. If more is raised, they can run additional events. The crowd funding is only open for a week, so please do consider making a donation – and doing it now! Click here to be taken to the Pozible page.

Congratulations to Diabetes Victoria for acknowledging that parents of kids with diabetes are a specific group that need support amongst their own peers. Extra huge congrats to Kim Henshaw who has spearheaded this project as part of her role as Children and Families Coordinator.

Please do donate. I returned home last week after spending time with my peers feeling refreshed, energised and connected. Parents of kids with diabetes deserve to feel the same by spending time with each other.

Not a functioning beta cell amongst us.

Disclosure

None! I was sent information about ConnecT1ons from the Communications Manager at Diabetes Victoria last week, but she did not ask me to write about it. I don’t work for Diabetes Victoria (I left there back in Jan 2016) and have had nothing to do with this new initiative. But you have to admit it’s a good one. Hence, this post.

Just over half way through the Australasian Diabetes Congress and after a massive few days, I’ve lost my voice, my way and, my ability to form coherent thoughts. Thank goodness for links and stuff.

Grumps Down Under

Before the Austalasian Diabetes Congress (ADC) even kicked off, our skies darkened, a final Winter cold-blast hit the east coast of Australia and The Grumpy Pumper arrived. Oh, and Melbourne lost our World’s Most Liveable City crown the day Grumps arrived in my hometown. I’m not necessarily saying these things are connected, but that’s a lot of coincidences…

Anyway, Grumps and I spent the next few days drinking Melbourne coffee and tackling the issue of language and diabetes, and Grumps spoke about his #TalkAboutComplications work. The ACBRD team has written about his visit last week here.

Coffee. Because: coffee.

Once Melbourne had enough of Grumps, we headed to  Sydney to do more work, including visiting the offices of Life for a Child and catching up with some of the team there.

#OZDSMS

After arriving in Adelaide, it was straight to the conference centre for the first gathering of Aussie diabetes advocates and bloggers for Ascensia Diabetes Care’s Social Media Summit.

Grumps was the special guest and as well as speaking about diabetes complications, he and I led a discussion about decision making in diabetes technology.

You can see what all the chatter was about by checking out the #OzDSMS tag on Twitter, (there was a lot of discussion!), and I’ll be writing more about it in coming days.

Hard at it!

DIYAPS at ADC

The next day, ADC kicked off with a symposium on the Brave New World of Diabetes Technology. Three early Aussie loopers – Cheryl Steele, David Burren and me – took to the stage and you can watch all our talks here:

New DIY Diabetes Technologies Position Statement at ADC

And if you make it all the way to the end (the symposium went for 2 hours all up), you’ll see Diabetes Australia CEO, Greg Johnson, launching Diabetes Australia’s new position statement about Do It Yourself Diabetes Technologies. I am so proud of this world first position statement, something that all diabetes stakeholders from all over the globe have been crying out for. (A reminder to anyone asking ‘Why don’t we have one of those?’: please don’t reinvent the rule. Adapt and use this for your jurisdiction and get it out there to start the conversation.

(Click link to go to position statement)

PWD on stage at ADC

Later in the day, the stage in Riverview 7, I was pleased to stand on a stage crowded with some wonderful diabetes advocates for an ADC first – a symposium on Co-design. More about this another time, but some familiar Aussie advocates shared their work which has really advanced the role of people with diabetes in the development and delivery of diabetes services, activities and resources. I was so pleased to be able to show the new Mytonomy ‘Changing the Conversation’ video as an excellent example of co-design.

Melinda Seed and Frank Sita at the co-design symposium

Sexy new pump hits Australia

And rounding out day one was the official launch of the Tandem t:slim pump which is making its way to our shores next month. This is a sexy, sexy little pump and I know there are going to be a lot of people very excited about it! (The pump is being distributed by AMSL Diabetes in Australia, so keep an eye on their website for more details.)

PWD at ADC

Pleasingly, there has been a presence of people with diabetes at ADC. Probably this is most visible when reading social media updates from the #DAPeoplesVoices. David Burren, Melinda Seed and Frank Sita have been invited by Diabetes Australia to provide updates and commentary of the Congress. They are tweeting machines and have been covering sessions, live-tweeting throughout. But that’s not all! Ashley Ng facilitated a Twitter workshop, encouraging HCPs at the event to get on Twitter and share what they were learning. Kim Henshaw is here from Diabetes Victoria; Tanya Ilkew from Diabetes Australia is also here. Grumps is here. And I’ve been doing what I can in between presenting and meetings.

I crashed last night with my voice gone, and fell asleep wrapped in the memory of a brilliant few days of impactful and meaningful advocacy efforts. There’s so much more to do. But these sorts of events, and opportunities to spend time with other people with diabetes who are certainly on the same wavelength and have the same commitment to bringing in the voice of PWD to all discussions, certainly help to advance our cause.

And one more thing

It looks like it’s that time again, Australia…

Disclosures

I was involved in the planning for the Ascensia Diabetes Care Social Media Summit and attended and spoke at the events Grumps attended. I did not receive any payment from Ascensia for this involvement or for attending the Summit. They did provide lunch and dinner, and gave me a free Contour Next One blood glucose meter. And an almost endless supply of coffee. Ascensia has not asked me to write about any of the work I’ve done with them. But I will, because I like to share and I know there are people who are desperate to know what was going on while Grumps was here!

Grumps was here as a guest of Ascensia Diabetes Care, who brought him to Australia to be the keynote speaker at the Ascensia Australia Diabetes Social Media Summit and to speak at other events about his #TalkAboutComplications initiative.

There is never a better time to employ the WAIT (Why Am I Talking) philosophy than when speaking with someone newly diagnosed with diabetes. Even if there is lots I’d like to say, as I wrote in this oldie from the archives.

________________________________________

She called me because someone had told her to get in touch. ‘Speak with Renza. She gets it.’ Is what she was told. She we organised a time to meet and over coffee we talked. And she searched my face for reassurance as she told me how scared she was feeling.

When I meet someone who has recently been diagnosed with diabetes, I say very little. I listen. I ask questions and gently try to find out what is going on in their head. I don’t say much about my own diabetes, because I don’t want to imprint my experience in their mind. Everyone feels different at the time of diagnosis and working out exactly what they are feeling needs some time.

I listen and sit there quietly and try to reassure and be positive. I nod a lot, and let them talk and vent and, if they need to, cry. Usually people cry. And I let them know it is okay. I did all of this with the woman who called me. She did cry and she did vent. And then she cried some more. And I said hardly anything.

But this is what I wanted to say:

  • It is okay to feel scared and uncertain. Or angry. Or completely and utterly ambivalent.
  • Because, you see, there is no right way to feel right now – or ever – about living with diabetes. And equally, there is no wrong way to feel.
  • You don’t have to work this all out this week. Or next week. Or next year. In fact, you never have to work it out.
  • But do work out what you can manage today and do that. And whatever it is, it’s enough. It. Is. Enough. And well done you for doing it!
  • Find your tribe. In fact, this is what I want you to know more than anything. Others who are also ‘doing diabetes’ will help you make sense of this new world. You have to be ready to do that, but do be open to the idea. I wish that someone had introduced me to others with diabetes when I was first diagnosed. It took me over three years to meet another PWD and I felt so alone in those three years.
  • And when you do meet people, don’t think that anyone has this diabetes thing worked out completely. Even those who say they do…
  • …because, there is always more to learn, which is daunting and exciting in equal measure.
  • I promise you – whatever you are feeling, whatever you are thinking, someone has had that same feeling and same thought. You are not alone. (Reading diabetes blogs will prove that to you!)
  • Diabetes may feel like it is about to take over your life and it probably will for a little bit. And there may be times that it does again. But it will not define you for the rest of your life or determine who you are. It can be as much or as little of your identity as you choose to let it.
  • You will be okay. You will be okay. You will be okay. (And, yes, I am saying that for your benefit as much as my own!)
  • There will not be a cure in the next five years. Or even ten. I am not saying that to be pessimistic, I just want you to understand that hope is really important in living with diabetes. But unrealistic expectations that won’t come true are not going to give you that hope; they will destroy it.
  • Ask questions. All of them! You may not like the answer (i.e. see previous dot point), but ask anyway. You will be amazed at the things you learn.
  • Your diabetes; your rules. This will become more and more apparent the longer you live with diabetes. You don’t need to explain, apologise or justify anything you do to manage your diabetes. Ever.
  • Anyone who makes you feel crap about your diabetes – whether it be the fact you have diabetes, or how you are living with it – needs to fuck off. (And if you can’t tell them that, find someone in your tribe who can! I am happy to be that person. Truly! I have the mouth of a trucker and I’m not afraid to use it.)
  • Do not watch Steel Magnolias. Ever.
  • Right now, this probably seems like it is the worst thing that will ever happen to you. This may sound odd, but actually, I hope it is. Because I know you can get through it.
  • You will laugh again. And smile and feel light. You will not think about diabetes for every minute of the rest of your life. It will be there, but it does not have to rule your very being. It certainly doesn’t rule mine. You will learn where to place it in your world, and that is where it will sit.
  • You do not need to feel grateful that you have been diagnosed with diabetes and not something else. Because it does suck. It’s good to remember that and say it every now and then. Or shout it out. While drunk.
  • Go buy a new handbag. Trust me! If you want, I can help you to justify it as needing a new bag to cart around all your diabetes crap, but just do it for yourself. And while you’re at it, a new pair of shoes. Just because!
  • Call me. Anytime. If you want. Only if you want. And even if it just to hear me tell you that you will be okay.

But I didn’t say those things. I only said this: You will be okay. I know this to be true because you are strong and resilient and capable. I know this to be true because many others have walked this path and worked out how to make it okay for them. You will do that too. It will be okay for you.

And I hope that was enough. Or, at least, enough to start with.

I have a very scientific way of collecting info to share in these Internet Jumbles. I make weird notes on my phone that absolutely make sense when I note them down, and then make absolutely no sense when I revisit them to put together the latest edition. (Case in point: ‘DMK mine’ had me stumped for a few hours until I realised that was shorthand for the HypoRESOLVE piece on Diabetes Mine. The DMK is because the meeting was in Copenhagen. Of course it makes sense. Perfect sense.)

Half the time, even after trying to work it out, I still can’t understand my notes, so there is a shedload of stuff I wanted to share that is still a mystery trapped in my iPhone.

But! Here are the ones I was able to decipher. Buckle up…it’s a long one. 

Ask patients? That’s novel

Results of a review of international literature examining patient involvement in the design of healthcare services showed that patient engagement can inform education (peer and HCP) and policies and improve delivery and governance.

I am always interested to read these sorts of articles, but must say, my response is often an eye roll and the words ‘No shit, Sherlock’ muttered under my breath.

More here.

Research and people with health conditions

What is the role of people with health conditions when it comes to research? This editorial from BMJ suggests that full partnership is the best way. 

And this infographic from Public Health Research and Practice about how to involve consumers in health research is also useful.

Thanks for listening

It’s so nice when people actually take home some tips and tricks from presentations I’ve been involved in. This tweet over the weekend from diabetes educator Belinda Moore (referring to a symposium at last year’s ADS ADEA meeting in Perth in which I was fortunate enough to be involved) was gratifying.

Peer support remains an absolute cornerstone of how I manage my diabetes as effectively as I possibly can. It is those others walking the same road who help me make sense of a health condition which takes delight in confusing the hell out of me!

The driver’s seat

This post from Melinda Seed underlines why she believes that the idea of diabetes being a ‘team sport’ is not especially accurate.

More here.

Complications and language

The awesome PLAID Journal (which you really should bookmark and read) published a piece just as ADA kicked off about why we need to change the way we speak about diabetes complications.

The piece was written by me and Chris Aldred (AKA The Grumpy Pumper), bringing together Grumps’ #TalkAboutComplications initiative and my constant banging on about language. (I first wrote about needing to reframe the way we talk about complications five years ago in this piece. Every word still holds true.)

You can reads the PLAID Journal piece here. And please share. This is a message that we need to get out.

Wellness is not the same as medicine

My huge crush on OB/GYN Dr Jen Gunter only increased after she published this piece in the NY Times last week.

I have written before about how damaging the ‘wellness industry’ can be in diabetes, including this piece on the language of wellness.

Diabetes Voice reboot

The IDF’s magazine has had a reboot and is not delivered in a digital format. Check it out here.

Well, that’s candid…

This photo of Cherise and me snapped at Diabetes Mine’s DData Exchange is hilarious in itself, but Amy Tenderich’s caption is gold!

(Click for source)

Right device, right person, right time

Dr Kath Barnard’s piece in Diabetes Medicine Matters reiterates her message from the 2017 ATTD meeting (I wrote about it here) about the importance of matching the right device at the right time for the right person.

More here.

What are the barriers to preconception care ?

This piece was just published in Diabetes Research and Clinical Practice looking at the reason women with diabetes may or may not attend pre-pregnancy care. (I was a co-author on this piece.)

‘If only there was a….online community for people with diabetes’

That comment came from a HCP at a diabetes conference a few years ago – just after someone (maybe me? I can’t remember…?) had literally just given a talk about the diabetes online community.

The DOC is not new – it’s been around for some time – and this great piece from Kerri Sparling gives a history of the DOC.

HypoRESOLVE on Diabetes mine

I was interviewed by Dan Fleshler from Diabetes Mine about HypoRESOLVE. You can read his piece here – it gives a great overview of the project.

On a break

I’m going to be taking a little Diabetogenic break for the next couple of weeks. The rest of the year is shaping up to be super busy, so I thought I’d use the next fortnight to get myself organised.

I’ll be sharing some old posts from the Diabetogenic archives and expect to be back just in time for the Australasian Diabetes Congress which kicks off in Adelaide on 22 August.

In the meantime, be well and be kind to yourself.

I was in Sydney last Friday for a day of meetings, and once they were done, I met up with a new diabetes friend, Amira, who I met only a couple of months ago, but had instantly connected with in that way that only those dealing with messed up beta cells do.

I met her at work and then we walked to have a coffee and a chat. After a while, our conversation turned to her work as an optometrist. Amira told me about the camera she uses to do retinal scans.

I mentioned that I’ve never had a retinal scan as part of my eye checks. My ophthalmologist always dilates my pupils and spends a good amount of time looking at the back of my eyes for any changes. This is how my eye care has been managed and I have always been happy with it (and by ‘happy’, I mean: ‘it makes me cry just thinking about it, but I do it anyway’).

Would you like me to take a photo of your eyes?’ Amira asked me. ‘You can send the images to your ophthalmologist to keep on file.’

I thought about it for a moment and took a deep breath before answering. ‘Sure,’ I said. ‘Let’s do that! Thank you!’

We walked back to her office and Amira explained how the camera worked and how I needed to position my eyes. After scanning both my eyes, she sat with me and explained exactly what she could see. She pointed out each part of the eye and what she was looking for and patiently answered my questions. She showed me how she could see the artificial lens that had replaced my own when I had my cataracts removed. (And she clarified that the black spot that I was the first thing I saw was actually a mark on the camera – not my eye.)

She told me exactly the same thing I’d heard back in May when I most recently saw my ophthalmologist: ‘Looks great. There’s nothing to be concerned about.’

I wish that THIS was the first time I had ever seen the back of an eye of someone with diabetes, instead of the frightening image shown to me less than eight hours after being diagnosed, when my first endo showed me a photo of an eye with – apparently – diabetes-related retinopathy. I say ‘apparently’ because I had no idea what I was looking at and had no idea what anything meant.

But that image, accompanied by the words ‘This is what happens with high blood sugars,’ has resulted in years and years of seeing an out of range number on my glucose meter and automatically imagining my retina decomposing…behind my very eyes.

This, combined with other scary images used as part of diabetes awareness campaigns, not to mention the occasional poster in the waiting rooms of various HCPs, is why I am so terrified about anything to do with eye care.

And when we also add the blame and shame that inevitably accompanies discussions about complications, using language that disempowers, it is no wonder that my response to Amira asking if I wanted a photo of my eye was to automatically panic.

Despite twenty years of regular checks, with positive outcomes and a supportive ophthalmologist, the legacy of that initial encounter and subsequent frightening images have taken their toll.

Amira emailed me the images of my eyes, and I’ve spent a long time looking at them – because I know what I am seeing (plus, my eyelashes look awesome!). This is information. It is a snapshot in time and, thanks to Amira’s explanations, I understand what is going on .

‘Come and have another scan next year,’ Amira said. I might just do that. While it will be great to have annual images as a comparison, the best part will be I get to spend time with my awesome new diabetes friend!

Amira has provided me with this explanation of the camera she uses and what it does:

‘Ultra Wide Daytona Plus provides contrast and both red-free and green-free filtering, as well as autofluorescence modalities (so we can see layers in front and behind the retina and assess which part is affected).  

Photo documentation means we can monitor and track overtime, allowing for early detection. 200 degree retinal scan compared to a standard scan that often gives around 45 degree view.

Part of my work involves attending diabetes conferences both here and around the world. Sometimes I have a speaking gig, other times I’m there for meetings, and always I’m there to learn as much as I can about the latest in diabetes.

I love this part of my job in equal measure with not loving it. The ‘love it’ part is because I get to meet with and hear from some absolute superstars in diabetes research and get front row preview seats to what they’re working on. And I love it because I get to see other advocates who are there for the same reasons I am.

The ‘not love it’ part is because I spend a lot of time away from my family and ‘real life’. I feel enormous mother guilt (this time I missed the kidlet’s Winter Music Concert) and feel lousy for leaving lists of plans and schedules for people other than me to manage. Plus jet lag. I talk about jet lag so much because these days it is absolutely kicking my arse as it turns me upside down and into a bumbling, confused, unintelligible mess.

I realised when I was at ADA in Orlando that all my overseas DOC friends have only ever seen me at my jet lagged, time-travelling worst. They get exhausted, grumpy, vague, annoyed me. And they get me doing weird things like falling asleep in front of them only to suddenly get a second wind and become almost hyperactive where I speak a lot – and really quickly – about weird things such as Australian-isms that I believe they absolutely must start to use in their day to day vernacular. (Only click on this tweet if the eff word and spiders don’t offend you…)

And then, I reach a point where I abruptly stand up and say ‘That’s it!’and just leave and head to bed, often mid-conversation.  Why they still want to talk and hang out with me is actually a mystery!

But I am glad they do want to spend time with me, because sometimes, being at a diabetes conference is really hard going emotionally.

We sit there listening to some pretty tough stuff; scary stuff. We hear ourselves being spoken about as ‘subjects’ in research which takes away our ‘human-ness’ and makes us sound like rats in a lab.

We are referred to with words that make us sound like petulant children (‘non-compliant/non-adherent/failed’ etc.) and all we can do is tweet our frustration (and language positions statements) begging that presenters be considerate in the words they use.

We hear scary, scary tales of all the things that can go wrong with diabetes in a variety of different situations. I reluctantly walked into an 8am session on diabetes and pregnancy, and even though that ship sailed a few years ago for me now, I still brace myself for the research showing that diabetes can and will impact on our developing babies, and children once they are born. That mother guilt I spoke of early is gets turned into mother-with-diabetes guilt which is a monster of proportions all to itself. (Of course, the wonderful Helen Murphy’s talk at 8am was not scary or mother-with-diabetes-guilt-inducing. Instead it was full of interesting facts about how APS impacts positively on diabetes pregnancies. Hurrah!)

Diabetes-related complications are spoken about in matter-of-fact ways that zone in on specific parts of our body and suddenly we stop being whole. ‘The diabetic foot/eye/kidney’ is still attached the rest of us, and yet whole sessions dissect them from our bodies and focus solely on that part of us, forgetting how connected we are to them (literally and figuratively!)

We are told about how diabetes increases the risks of so many, seemingly unrelated problems that can only make me feel as though the cards are stacked so against us that, sometimes, diabetes just isn’t fair. (See also – or maybe don’t – this released today…)

We sit there listening to advice on how things could be improved and sometimes, shake our heads at the disconnect between what is reality to those of us actually living diabetes and the ideas from researchers and clinicians. We wonder what – if any – engagement there has been with the people this advice is meant to serve.

It can be – it is– emotionally draining, exhausting, frustrating.

Those moments when a friend’s sideway glance, or eye roll, or a snarky comment in response to yet another kick in the gut because diabetes is all bad news, is a reprieve from feeling a little shaken. (Of course, it’s not all like this. Often we sit in sessions and feel that those presenting are truly championing our efforts and we do high five through those presentations.)

And those evenings when the sessions have finished, and the official dinners are over and we simply sit together, debrief, refocus and put diabetes back in perspective, make me whole again. It’s the same at every conference. The people may change depending on the location of the conference, but there are always people there. And I’m grateful for that, because I may return home exhausted and jet lagged, but I’m not overwhelmed at what I have seen and heard. Which I fear is how I would be if it wasn’t for the caring, smart, understanding, wonderful people in this tribe .

Tribe at ADA

Official ‘Look! We’re at a conference!’ photo.

One of the best things about going to diabetes conferences is finding time to speak to, and bounce ideas off, fellow people with diabetes. It’s always so great to hear others’ ideas and opinions – sometimes I find myself nodding in furious agreement, and other times their views are completely opposite to how I see things. 

A couple of weeks ago at the America Diabetes Association Annual Scientific Meeting, The Grumpy Pumper and I spoke about a post I was writing (and subsequently published last week) about using the latest diabetes technologies at diagnosis. I knew that he would have some strong thoughts on this topic. 

Grumps said he had some concerns with my ‘give us all the tech right now at diagnosis’ approach, and today, he’s written his thoughts. (Seriously – my pestering him to write is paying dividends these days! Note to self: keep on it!)

Here’s what he has to say…

_______________________________________________________

I’m not really sure if this is a What Would Grumpy Do (#WWGD) post or not. Or if it’s just rambling of the kind of crap that occupies my tiny brain on a daily basis.

Anyway…

Last week, the Nigella of the DOC posted about the use of diabetes tech and how early someone should be offered it post diagnosis(Renza note: Grumps: We’ll be talking about that nickname next time we catch up…)

This subject always interests me, and, to a point, concerns me.

Don’t get me wrong: I love the idea of everyone having the choice of whatever kit they want and need to manage their diabetes, as early as possible in their journey with diabetes, to be able to relieve their own personal burden of diabetes. This also goes for parents and carers too – (those that manage diabetes in a different way, for or with the person with diabetes, dependent on their age etc.).

Of course, the utopian world is for a fully functioning ‘Artificial Pancreas’ (AP) to be commercially available and affordable; a world where at diagnosis, everyone has access to this and the information to make an informed choice if it’s right for them; a world where for most, if not all, that burden of diabetes is not even realised…

My interest and concern?

Well, my job, (as uninteresting as it sounds to most), is business continuity. Or planning for what happens when (as an organisation) things go wrong: when technology that you rely on is unavailable; when your supply chain lets you down; when there is a skills shortage to carry out the things you need to do.

As a result, my brain (tiny as it is) constantly sees the possible risk of what could go wrong, and the mitigations and plans. (The saddest part? I actually enjoy it…)

You can maybe see where I’m trying to go with this now?

The more we rely on diabetes technology, and the earlier we do so, then we (in my opinion) need to have better contingency plans in case things go wrong.

Our ultimate safety net is hospital. However, none of us want to have that as our contingency, do we?

Continuity planning isn’t complicated: it can be detailed; it’s often dull. Ideally it never has to be implemented, but inevitably it does.

The official definition of business continuity is:

‘…the ability of an organisation to maintain essential functions during, as well as after, a disaster has occurred.’

Basically: the ability to carry out the essential things you need to do when shit goes wrong!

I’ll try and keep this brief since I can see you are already dropping off to sleep.

For me, with my diabetes management, it breaks down to this:

Essential functions (the minimum things I need to achieve):

  • Avoid DKA
  • Stay in a safe glucose range (so wider range than usual target, and sod any talk of flat lines!)
  • Be able to detect and treat hypos
  • Be able to fulfil driving regulations

Tasks I need to do to achieve the above:

  • Get a measured amount of insulin into my body
  • Be able to check my glucose levels
  • Treat a hypo when detected (meter or hypo awareness)

Critical tools needed to achieve the above:

  • Insulin
  • Insulin delivery method
  • Blood glucose monitoring system
  • Hypo treatments

The level of continuity that you wish to plan for is total up to the individual. Ideally, we usually try to plan for minimum disruption.

My current diabetes kit is:

  • Insulin
  • Insulin Pump
  • CGM
  • Blood glucose meter
  • Hypo treatments (various)

Whilst I am lucky enough to have spares for most of this kit, I, in my opinion, benefit from being old school. My journey to diabetes technology has been progressive and having started on injections (via syringe) I am confident that I have the skills to keep myself safe if all my technology failed.

As a result, my base-level back-up is:

  • Insulin
  • Syringe
  • Blood glucose meter (and of course strips)
  • Hypo treatments (or cash to purchase as a back-up to my back-up)

So, there you have my interest…

My concerns?

Skills shortage.

In that utopian world where all go onto AP at diagnosis, how do we ensure that we have the skills to stay safe if technology fails? Or if a suppler fails to be able to get a component to us? Let’s face it, a hurricane in the wrong place can cause production issues that lead to shortage of supply; transport strikes; fuel shortages. All of these, and more, have possible impacts.

So if we don’t have the skills to implement our back-up plan, then what use is it?

Some would argue that PWD would need to be educated on MDI etc., which is very true. However, it is another thing for most adults to know how to inject and actually doing it for the first time.

Then there are children with diabetes. Diagnosed as a baby and on a pump soon after, the child may never know how to inject. Until they need to. That could be a huge psychological thing for any child.

There is no one easy answer. As always, and as I said above, our ultimate safety net is hospital so we should always be safe.

But my advice to myself is:

  • Have a plan
  • Know how to use it
  • Wear sunscreen

Live Long and Bolus!

Grumps

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

Dear Channel 9

Hi. You don’t know me, and to be perfectly honest, I don’t really know you either. My TV tastes run less to the sensationalist and more to the Netflixist, but nonetheless, here I am writing to you.

You see, I want to talk about Drew Harrisberg for a minute.

So, I work for a diabetes organisation and as a diabetes advocate, and one of the best things about my work is that I get to meet people with diabetes from all over the world and from all walks of life.

One of those people is Drew Harrisberg, who I met through some diabetes device events that I have facilitated.

Drew’s on the far left. With the red circle around him.

Drew is an exercise physiologist and a diabetes educator (as well as a singer/songwriter, model and also probably saves kittens from trees/rescues small children from wells/helps grandmothers across the street with their grocery shopping.) Oh – and he happens to have type 1 diabetes.

I can tell you now, Drew and I have very different interests. He’s all about physical activity. I’m all about sitting around drinking coffee and making cookies. But, we both have AWOL beta cells and love dogs, so there’s something in common there!

Just after the latest Abbott DX2 event where we caught up, I was watching TV and there on the screen was Drew’ face. He was on the promotional advertisements for Ninja Warrior.

Okay – full disclosure here: I had to see the ad half a dozen times before I worked out the name of the show and then I had to Google it to work out what the hell it was all about. I’d never heard of Ninja Warrior before. Now I know it’s a reality TV show involving ridiculously athletic and fit people engaging in competitive torture completing obstacle courses. (I know – it’s an absolute fucking miracle I’m not all over this and wanting to be part of the action…)

Anyway, after seeing that Drew was involved, I did get a little interested. While my reality show viewing generally extends to Masterchef (because: Nigella) or Grand Designs (because: Kevin McCloud), I was suddenly keen to know just how Drew would be presented on the show.

Reality TV show producers love a back story. In fact, they’re ALL about the back story. And I figured that Drew’s back story was going to be about the fact that he lives with type 1 diabetes. I could hear the emotive music playing already and see Drew running slow-mo along the beach, his dog beside him, as his voice told the story of his diagnosis and how, despite the obstacles he faced by diabetes, he could still face the obstacle course of Ninja Warrior (and, fuck! I should be writing copy for that show right now; give me a job).

I do love a little bit of diabetes awareness on mainstream TV. If there is an opportunity to bust some myths and smash some stigma, I’m all over it, and I figured that Drew’s appearance on the show could do that. Plus, I’ve been told that kids LOVE this show, and I thought it would be great for kids with diabetes to see Drew not letting diabetes be a barrier to him being his very-best-obstacle-course-beating self.

So, I was resigned to watching the show when it starts (soon, apparently) and cheering on my mate from the comfort of my sofa (while drinking coffee and eating the cookies that I choose to bake in lieu of doing any exercise). I figured that the diabetes community here in Australia would really get behind him, hoping that he would not have to deal with any pesky hypos just as he was…well…doing whatever one does on an obstacle course.

Except, then I noticed that he was no longer in the advertisements. Where Drew’s face had once been, I suddenly saw the perfect smile of someone else (someone, I assume, with a functioning pancreas). I checked the website and he was nowhere to be seen. It appears that Drew has completely disappeared from all Ninja Warrior promotional materials. (Wait! Is this the ninja part of the show? I still don’t really understand it…???)

Although I may be a tiny bit pleased that I don’t need to commit to a three month reality show, I am so disappointed that having someone with type 1 diabetes on prime time TV has been lost.

So, Channel 9 – any chance you can share what’s going on? What have you done with Drew? Why has he disappeared? Why have you completely forsaken this awesome opportunity to showcase someone on your show who is living with a serious and seriously challenging health condition?

Looking forward to learning the full story…

Best,

Renza

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