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There’s lots happening, but I can’t look away from my Loop app at the moment because I’m so damn excited and obsessed! (I’ll be writing something about it sometime this week.)
But if I wasn’t doing that, I’d be (re)reading these things…
Why it costs so much to see a specialist
I’ve always paid to see my endos privately. In fact, I generally ‘go private’ for all my healthcare needs – I can’t remember the last time I was bulk-billed for a medical consultation.
It does cost a lot, and I am grateful I can afford it, but the excessive costs often discourage people from seeking the right care they need. Of course, we do have excellent public health in Australia. My choice for seeing HCPs privately include wanting continuity of care, and not being subject to frequently very long waiting periods.
This piece in The Conversation looks at why specialist care is so expensive. And what can be done to reduce costs.
Lookiee! A diabetes Wookiee!
For those who participate in OzDOC (and other DOC activities) you may have come across David Burren. I met David last week to talk all things tech (actually, I just fired questions at him about Loop and he patiently answered them without rolling his eyes even once). He’s started a diabetes blog all about diabetes and technology and, thankfully, it is in language that even I can understand.
Check out David’s Bionic Wookiee blog here.
Statues are like tumo(u)rs.
With all the nonsense going on in America at the moment, this piece from McSweeney’s most adequately explains why the ridiculous idea that statues commemorating less than favourable moments in history need to remain. Here’s my favourite part:
I view this tumor as an important symbol of your body’s history and heritage. Removing the tumor would be yet another example of misguided medical correctness in today’s liberal America. I protest this surgery and refuse to whitewash your rich medical history. The tumor must be kept prominently displayed inside your body.
Do better, America. We all know you can.
More on what’s on the inside
Mel Seed’s blog about normalising mental healthcare in diabetes follows on from DX2Melbourne and is well worth a read. Read it here.
Diabetes is just…
This…
Faster insulin coming to Aus
A couple of weeks ago, I shared on my socials the exciting news that ultra-fast insulin, FIASP, had received TGA registration. No actual ‘launch’ date info as yet, although next week is the ADS ADEA Annual Scientific Meeting, so we may hear more then.
And in news that we already know…
Apparently, CGM is not just for abdomens anymore… File under ‘No Shit Sherlock’.
Swear-y
My blog emails keep getting blocked by the profanity filter at my husband’s work. Every now and then, he forwards me the message he’s received which states that the email was not delivered due to ‘offensive language’. #SwearyWife
This Twitter account definitely wouldn’t make it through, but it’s one of the best things I’ve seen on the interwebs for a while. I’d like to print THIS up poster size and put it on the wall of my office/wear it on a t-shirt, but perhaps that’s not appropriate.
D-parents and sharing the scary parts of their child’s diabetes online
I’ve linked to Moira McCarthy’s writing before because I think that she gets it right every single time she writes about the role of parents in their child’s diabetes.
This piece asks parents to consider if sharing their child’s scary and dramatic diabetes stories online is doing more harm than good. (I rather clumsily explored a similar issue last year in this post.)
Read her piece at ASweetLife here.
4Ts on Diabetes Mine…
Last month, during National Diabetes Week, in an endeavour to get our 4Ts message out as widely as possible, the good folks at Diabetes Mine allowed me to write a little about our campaign. You can read that here.
Living and loving someone with diabetes
As much as I think I am the most delightful and easy-to-live-with person in all the world, I have to admit that diabetes can and does impact on all relationships… and makes me perhaps not the most delightful and easy-to-live-with person. Aaron and I chalked up 23 years together yesterday. Diabetes has been part of the equation for over 19 of those years.
Diabetes advocates Nicole Johnson and Lorraine Stiehl have written a new book which has been called a practical guide to loving a person with diabetes. I’ve ordered a copy and will be leaving relevant pages open for my loved ones to read.
You can get a copy of What To Do When Your Partner Has Diabetes: A Survival Guide from Amazon.
Meme-y and true
There are a lot of diabetes memes out there, but sometimes I see one that just hits the mark so perfectly. Such as this from a TuDiabetes community member:
At #DX2Melbourne last week, we had a live webcast in an attempt to include people not invited to be part of the event to hear from some of the bloggers and contribute to the discussion. The hour-long webcast was about diabetes and mental health.
With delusions of Jenny Brockie and Tony Jones, I facilitated the discussion – which was actually quite difficult as there were thirteen of us sitting in a row meaning we couldn’t all see anyone other than who was sitting directly next to us without leaning dangerously forward. Also, I kept nearly falling off my stool, which suggests that I am the most ungraceful creature to have ever been positioned in front of a camera.
I’d put together some questions and discussion points to guide the discussion, but was very open to any tangent the group wanted to take to really navigate and explore the topic of diabetes and emotional wellbeing.
As the discussion flowed, I couldn’t help but feel a sense of déjà vu. Another talk about how diabetes affects us emotionally; another talk about not getting the support from psychologists and counsellors that we need; another talk about how usually it’s not even recommended that we may need to speak with someone about the mental health aspect of living with a chronic health condition; another talk from well-connected diabetes advocates saying that there is more to diabetes than simply being told our A1c, or any other number for that matter.
Amongst all the chatter, I asked myself how many times I’d participated in talks, how many talks I’d given, how many tweet chats I’d tweeted in, how many blog posts I’d written that were about the emotional side of diabetes. And then today, on my TimeHop app came this tweet, from an OzDOC tweet chat about mental health, held exactly 12 months ago today:
I’m not saying this because I think we’ve ‘done’ this topic and should leave it alone now. Not at all. I’m just suggesting that we’ve been having the same discussions about this really important topic for a long time, and yet diabetes care still seems to have this imaginary, yet somehow real, line down the middle, with the physical aspects of diabetes to one side, and the emotional aspects on the other as if the two are not fundamentally connected.
I knew that there would be some people listening in who would be hearing all of this for the first time. It would be the first time that although they had probably worked out that there was something missing from their diabetes care, they weren’t sure what it was. Or, they may have known they needed to speak to a psychologist or a counsellor, but didn’t know who to ask about it…and anyway, they may have thought, surely if this was something that lots of people with diabetes feel, someone would have mentioned it by now, right? Right???
Nineteen years I’ve had diabetes. And for at least seventeen of them, I’ve understood and known the importance of checking in on how the emotional impact of diabetes is contributing to how I am managing my diabetes. Or how I am not managing my diabetes (see above tweet….).
The idea that we can separate our mental health and emotional wellbeing from our diabetes is ridiculous. A condition that permeates every aspect of our life, moves in, makes itself a home and lords over us with terrifying threats of what lies ahead, impacts on our abilities to manage the day-to-day physical things we need to do.
Those watching the webcast at home could submit questions for the panel. A couple of diabetes healthcare professionals were watching and one asked a question that, as I read it, made my heart sink. He said that he sees people with diabetes who he believes would benefit from seeing a psychologist, but he is concerned that they will be offended if he suggests it. He asked the panel for ideas on how to broach the subject without causing offense.
Why did my heart sink? Because the question showed that there is still so much stigma associated with seeing a mental health professional, that other HCPs – on the ball, sensitive ones who know and understand the intersection between diabetes and mental health – feel worried that they might upset someone with diabetes if they suggest referring to a psychologist.
Until we normalise psychological support – until at diagnosis when we’re introduced to our new diabetes HCP best friends and psych support is part of that team – the stigma will continue. I’m not suggesting that everyone will need or want to see a psychologist. But putting it on the list, alongside a dietitian and a diabetes educator and an eye specialist will at least people understand that, if needed, there will be someone there to help with that particular piece of diabetes. (And to be perfectly honest, I really do wish I’d seen a psychologist at diagnosis rather than the dietitian who has scarred me for life with her ridiculously large rubber-mould portions of carbohydrate she insisted I eat at every meal!)
I don’t feel as though I am a failure because I have needed to consult a mental health professional in the past. I don’t think that it suggests that I can’t cope or that I can’t manage diabetes. I see it as important a part of my diabetes management as anything (and anyone) else. A lot of the time, I don’t feel as though I need to see someone. But other times, I do. And that is fine.
DISCLOSURES
Abbott Diabetes Care covered all my costs to attend #Dx2Melbourne, and provided all attendees with two FreeStyle Libre sensors and, if requested, a scanner. There was no expectation from Abbott that I would write about the event or any of their products, and everything I do write about it is my opinion, in my own words, and in no way reflects those of Abbott – or anyone else, for that matter.
On Monday and Tuesday of this week, I attended and facilitated Abbott Diabetes Care’s #Dx2Melbourne event which brought together eleven Australian diabetes bloggers. (All my disclosures can be found at the end of this post.)
(Just a recap – the DX (or Diabetes Exchange) series of events have now been run about half a dozen times. Other than #DX2Sydney and this year’s Melbourne events, the others have been held in hard-to-take cities including Stockholm, Berlin and Lisbon and have been attended by bloggers from the UK and Europe.)
#Dx2Melbourne reunited most of the bloggers who attended last year’s event, with some new faces thrown in for good measure. I was introduced to Alana Hearn for the first time, finally got to meet diabetes yoga guru Rachel Zinman, and caught up with Helen Edwards. (All the links to the blogs of the ‘repeat offenders’ who attended #D2Sydney can be found on this post.)
Some may believe that I am naïve in saying this, but the event is not about product. In fact, apart from a 45-minute presentation – the session that kicked off the two days – there was no other discussion about Libre or any other diabetes product unless it was specifically raised by one of the bloggers. Abbott did not have a new product to push; Libre has been out for over 12 months now in Australia.
(I am not, however, naïve enough to think that events like this are not part of the health industry’s 21st century marketing strategy. But, as I said last year when responding to a comment on my blog about this, this is the 21st century marketing. And I’m glad that consumers have a place in this strategy, because it would be far worse if industry was continuing with 20th century marketing strategies which completely excluded people with diabetes, and did not offer us any opportunity to directly engage and work with industry. Any device company NOT doing this is falling way behind and needs to catch up.)
As the Abbott team stated in their welcome, the idea of the DX events is to continue their commitment to bring together people living with diabetes to share ideas. And for Abbott to get an idea of what it is that is important to people with diabetes and what makes us tick – albeit a very select and privileged sample of advocates.
With this in mind, for me, the most valuable part of the event was the discussions that were completely driven by the bloggers. In an open session where we were exploring ‘why we blog’, I listened carefully as everyone articulated their reasons for going online and sharing their stories with strangers.
Reasons varied – some do it because they simply want to tell their story, some because they love to write, some have specific issues within diabetes they want to open up for discussion, some see it as an advocacy platform. What we don’t hear – ever – is anyone saying ‘Because I want to make money doing it’. I can be all evangelical about it and say it’s because we’re a choir of angels, but mostly I think it’s because we’re smart enough to know the limitations of what it is that we do, as well as understanding the strength is in connecting, not money-making.
We also considered the shortfalls of having an online presence.
I’m an over-sharer and I know that there is a lot I write that many others wouldn’t feel comfortable sharing – and some people have told me that it is sometimes difficult to read. I also write about issues that are of no real concern to others, and they are more than happy to let me know that I’m wasting my time and energy on such irrelevant (language) matters. I also know that as soon as I put something out there, I am opening myself up for comment – both positive and not-so-positive. We had a discussion about how we manage unwanted attention and, in the most extreme cases, trolling.
I have never regretted anything I have written or shared, and have never taken anything down because I’ve felt it was too personal. But I have had some very unwelcome and sometimes nasty comments sent my way.
I found this a really useful, but somewhat challenging, discussion. I have written about some very personal experiences, probably most notably, pregnancy loss. I’ve also written a lot about how diabetes impacts my mental health. These are two topics that are frequently hidden away, surrounded by shame and secrecy – precisely the reason that I am committed to writing about them.
However, the times I’ve been trolled – and fortunately, that hasn’t been often – it has been when I’ve shared very personal stories. They’ve been the times where I have found myself at my most vulnerable, and being so exposed makes any sort of negativity harrowing.
It was reassuring to discuss – and remind each other – that even though we are voluntarily putting ourselves online, we are not inviting people to be nasty and disrespectful. Online is real life, despite what some people may think. This is the space where many of us convene to work together, support each other and share information; it’s not a place for personal attacks.
I left the event on Tuesday feeling utterly exhausted, but also filled to the brim – a feeling that only comes after spending a solid period of time with others treading the blogging and advocacy boards. I was reminded of the similarities as well as the differences we experience living with diabetes. I felt buoyed by the various issues that draw our attention. I felt desperate at the access issues I still hear about – both here in Australia and overseas. But most of all I felt part of something that is much bigger than me, much bigger than my blog and much more powerful that anything I can do on my own.
Abbott Diabetes Care covered all my costs to attend #Dx2Melbourne, and provided all attendees with two FreeStyle Libre sensors and, if requested, a scanner. There was no expectation from Abbott that I would write about the event or any of their products, and everything I do write about it is my opinion, in my own words, and in no way reflects those of Abbott – or anyone else, for that matter.
(Settle down, Mum & Dad…)
I don’t have any tattoos on my body. And I rarely wear medical ID jewellery. How are these things connected?
Well, a lot of people with diabetes have diabetes tattoos, often on the inside of their wrists. Many say the reason they decided to tattoo their medical condition quite prominently on their body is because they don’t like to wear medical ID jewellery, (or don’t want the hassle of remembering to wear it). A tattoo is as permanent as you can get! Once it’s on, it’s on!
I’ve never really been interested in getting a tattoo, and I certainly have never even entertained the thought of getting a medical ID tattoo. This is obviously a very personal decision and I actually really like a lot of the diabetes tattoos that I’ve seen online. But it’s just not something that is very ‘me’. (And perhaps somewhere in this deeply cynical body of mine, a teeny tiny part of me that things maybe, perhaps, possibly there will be a cure for diabetes in my lifetime. And that unicorns exist.)
I do try to make an effort when I am travelling alone to wear my medical ID bracelet that I bought from a number of years ago. But the truth of the matter is that I very, very rarely do. Call me vain or shallow (guilty, guilty), but I don’t like the look of most medical ID jewellery, and even more, I don’t like looking down seeing a constant reminder of my medical condition staring back at me. I love wearing bracelets, but one that screams ‘chronic health condition’ is not really what I want to see when I am typing away and hear the jingle jangle of my bangles.
Today on my Instagram feed, this came up:
It’s from Pep Me Up Diabetes Blog which is run out of Germany by my friend Steffi. Steffi is awesome. I’ve met her in person a couple of times now as she’s also part of the Roche Bloggers Group. To date, her business has mostly sold very cool stickers for FreeStyle Libre sensors and scanners. She gave me a couple of stickers last year in Munich and I quite enjoyed sporting this one on my arm over the top of my sensor:
Now, Steffi has broadened her business to include temporary tattoos such as the one showcased on her Instagram feed today, as well as a couple of others which are also fabulous. In fact, if I were to get a permanent diabetes tattoo, I suspect that it would look like one of these:
(The first one means ‘I am greater than my high and lows’.)
I can see the merit of using a temporary diabetes tattoo. For me, travelling alone would be the time that I think it would be most appealing. But there are a lot of other situations that would be great too: music concerts and festivals, large sporting events, or even as a ‘try out’ for a more permanent inking!
I really love this idea – well done Steffi – and it is another example of some truly wonderful and fun things that are going on in the diabetes world by people with diabetes. Do support them if you can!
Want your own temporary diabetes tattoo? You can order here. And Steffi ships all over the world. Even Australia!
GIVEAWAY!
Steffi has kindly offered to send me a couple of tattoos for a giveaway. Want one? Click here and tell me when and why you would use one of these tattoos.
Wait – I think I found an alert bracelet I like! As I was scrolling through the Pep Me Up website, I found this and ordered it!
What a week. It’s been a big one. And here are some words I said to wrap it up…
And here’s some further reading..
All the details of this year’s National Diabetes Week 4Ts campaign.
IDF type 1 symtoms and DKA awareness campaign.
The tragic story of Peter Baldwin’s missed type 1 diabetes diagnosis and how his parents have committed to raising awareness of the signs and symptoms of type 1.
Georgie Peter’s type 1 diagnosis story via her blog Lazy Pancreas.
Thoughtful post from Rachel from Yoga for Diabetes about her diagnosis of LADA. Diabetes is so complex…!
See you in a week or so…I’m taking some time off here to catch up on everything else after the busy week. If you have a couple of spare minutes, please consider endorsing my nomination for this years WEGO Health Awards. Just click on this link – it doesn’t take long at all!
For the last sixteen years, I’ve been directly involved in National Diabetes Week (NDW) in some way. Admittedly, I missed a couple because we decided the middle of July is a good time to go to New York to escape the Melbourne Winter. Two years ago I missed half of NDW because I was in Orlando at FFL – I returned just in time for Kellion! Oh, and there was the year I had a little wee lass who I couldn’t stop looking at and cuddling.
But whichever way you look at it, I’ve been involved in NDW for a while. A lot of that was spent very much on the sidelines, because the campaign was type 2 diabetes focused and I was not. Or rather, my role at work was exclusively directed towards type 1 diabetes activities, and campaigns were always about raising awareness of type 2 diabetes.
This year, for the first time, there is an element of the NDW campaign that is exclusively focused on type 1 diabetes and it was launched today. It’s all about the importance of early diagnosis of type 1 diabetes, aiming to reduce the 600-plus hospital admissions each year because the early signs of type 1 diabetes have been missed. I know so many stories of people with diabetes being told they had a virus/urinary tract infection/were run down/growing pains (in the case of kids)/needed a holiday, and sent home with a prescription for antibiotics. Their type 1 diagnosis only came after ending up, very sick, in emergency, many needing ICU attention.
The campaign highlights the 4Ts of type 1 diabetes – Thirst, Toilet, Tired, Thinner.
We leaked a sneak peek of the campaign on Saturday to let everyone know that it was coming. The leaked video, which tells the diagnosis story of 9-year-old Isabelle, has been viewed by tens of thousands of people.
The response to the video and campaign details has been overwhelmingly positive, with people sharing the video widely amongst their networks. And comments have also been encouraging, telling us that the campaign is right in its tone and focus.
Today, the campaign was officially launched in Brisbane and all materials are now available for you to see and share. Here’s the campaign poster:
What can YOU do?
As this is a public awareness campaign, we need to get this information out to people outside the diabetes community. Mostly, those of us affected by diabetes now know the early signs of type 1, but that’s not the case for people who don’t have type 1 or know someone living with it.
You can help by sharing the video on all your social networks. Set your shares to public and encourage your friends to watch and share.
Share the poster – both online and off. You could print off a copies and take them to your GP office, school, supermarket and anywhere else with a community notice board. Ask your church or community group, or child’s school if the poster could be shared in newsletters.
Also, I wrote this piece for Mamamia Women’s Network – again as a way of reaching an audience outside the diabetes world. Please read and share this too.
Use the following hashtags: #ItsAboutTime / #NDW2017 / #4Ts
I have probably attended close to twenty Kellion Victory Medal Award Presentations over the years. You might think that they are all the same and to a degree, you would be right. Every ceremony involves people who have lived with diabetes for 50 or more years being given a medal while their story is shared.
And every single award ceremony has been just that. But the stories are rousing, the people are inspiring and learning about managing diabetes when technology was a glass syringe is sometimes mind-blowing! It doesn’t matter how many of these award ceremonies I attend, the overwhelming feeling of hope steadies and enthuses me for another year.
This year, 56 people were awarded medals, including sixteen 60-year recipients, one 70-year recipient and one 80-year recipient.
One of today’s 50-year medal recipients was Jenny Edge. Jenny frequently comments on Diabetogenic, never afraid to tell me when she thinks I’ve missed the mark; always happy to share her story.
I always love listening to Jenny. She’s very direct, and I always appreciate her no-nonsense attitude. There is no sandwiching how she feels with a couple of innocuous comments on either side of what she really wants to say. She gets to the point and gets there quickly. I find her quite brilliant!
Jenny was diagnosed as a young child, and today she told me how she really hated needles at first. ‘I thought they were cow needles,’ she said. ‘And then my dad showed me what cow needles really looked like – we lived on a farm. Suddenly, my insulin needles didn’t seem so scary.’
Although she received a 50-year medal today, Jenny has actually lived with diabetes for 55 years, so she’s only five years from receiving her 60-year medal. I hope to be there for that one too! Congratulations, Jenny!
Saturday afternoon I was flaked out on the sofa, the Winter sun shining palely through the front window. It had been a cold day and I’d been dealing with an unpleasant and tedious head cold, so I was enjoying the comfort of the house, a dog snoozing on my feet helping to keep me warm.
I was lazily scrolling through some things that I’d missed on Twitter and I stumbled across a protracted twitter exchange that began with this tweet:
Fair point. And reading David Gilbert’s Twitter feed and skimming through his blog, his commitment to patient-led healthcare is strong. He has a lot of experience fighting for the rights of healthcare users to be true partners in the system.
I was interested in the commentary that followed after Partha Kar, an NHS clinical director, quoted the tweet suggesting that things are different in the diabetes world. You can read that thread here.
I struggled with the exchange, feeling a little discomfort when every point made by the original poster was almost dismissed with a ‘but we are doing better’ comment, which completely and utterly missed the point.
I typed a couple of quick responses, deleting all of them. My head was foggy and I was not sure that my thoughts could be condensed in 140 characters or fewer. But I was trying to say that while I actually agree that ‘patients’ do have very limited ‘power’ and are often actively excluded from processes, that isn’t the point. For me, the discomfort was stemming from someone’s personal experiences being rejected by someone who is actually not in the same position – or rather, by someone who holds a position of responsibility in the very system being questioned.
Let’s reframe it this way. There is a gender pay gap that continues in every industry. Women are significantly under-represented as Company Board Directors, as CEOs, and in politics. Health outcomes for women are worse than they are for men. As a woman, I am conscious of the imbalance; I have fought for equality for as long as I can remember; I see the discrimination; I have experienced the discrimination firsthand.
Are there initiatives in place to try to address these gaps? Yep. Is the situation improved today as compared with 100 years ago? Perhaps. Are there men who are fighting for the rights of women? Of course there are.
But does that mean that women who are affected by the imbalance should have their (our) concerns and experiences dismissed because some are ‘trying to make a difference’? Absolutely not.
It is the same in healthcare. Just because there are some dedicated people steadfastly working to support and deliver a more person-centred, inclusive approach with its foundations in true partnership doesn’t mean that the problems are not still there. And it certainly doesn’t mean that we should stop paying attention to those who speak up about the inequality.
If people are feeling excluded – especially people with 30 years of experience in health advocacy, a Twitter following and a blog – we need to believe people are being excluded.
Just as it is not the place for men – even men who might be unequivocally feminist in their words and actions – to tell women that we need not feel discrimination because there are people committed to levelling the playing field, it is not up to HCPs to question the experience of healthcare consumers when we say we have no power and no ability to influence.
For the record, I agree with David’s original tweet. How much power do healthcare consumers really have in shaping healthcare? How much opportunity is there to truly influence the way the system, activities and programs are designed? In fact, how much of the system, and how many of the activities and programs are co-designed?
If we look at diabetes, how many positions are dedicated specifically to people affected by diabetes on Boards, expert reference groups, working parties, organising committees (etc.)? Can you think of an example when the split between HCPs and people with diabetes was equal?
And finally, a thought on language. The word ‘patient’ was used throughout the Twitter discussion and I believe it is problematic. It’s not a word I use; I don’t refer to myself that way. The Diabetes Australia Language Positions Statement advises against the use of the word because it ‘implies the person is a passive recipient of care, rather than an active agent in his or her own self-care’.
In a discussion about people feeling they have no power, using a word that clearly diminishes the role and involvement of the central person in the healthcare equation speaks volumes. At least I think it does.
If you can, think back to when you were diagnosed with diabetes. Can you remember much of it?
I can. I can remember almost every word that the endo, diabetes educator and dietitian said to me. I can remember that, in amongst the explanations of what diabetes was all about and how it would impact on my life, there were thinly-veiled threats about what would happen if I strayed from the plan I was being given with the expectation that I would follow it. I remember the rigid ‘my-way-or-the-highway’ instructions about how life with diabetes would be.
But mostly, I remember what was missing. There was no mention about the impact of diabetes on my emotional wellbeing. No one suggested that speaking with peers – others living with diabetes – might provide me with some much need comfort or camaraderie. No one hinted that I might like to do some of my own reading and investigating to come up with my own ideas of how to best manage this chronic condition that had moved into my body, my mind, my life.
No one told me there were options or suggested that I needed to carve out my own path and then work out to navigate it best.
If only I’d had a guide to help me do that – something to give me some ideas that felt more in line with how I lived before diabetes. I wanted something that shared real-life experience about how to make diabetes fit into an already really busy life, and help me be conscious of making healthier choices, but choices that didn’t feel as though they were suffocating me.
Now I have it – albeit 19 years too late!
Adam Brown from diaTribe has written Bright Spot and Landmines which he has sub-headed ‘The Diabetes Guide I Wish Someone Had Handed Me’.
Click on link to be taken to the first chapter.
As I read this book, I started to think about how different those early diabetes years would have been for me – the years before I found my voice, my people and an ability to work out my own way with diabetes.
I could use words such as ‘sensible’ and ‘practical’ and ‘level-headed’ to describe the advice gently doled out in Adam’s book, and they would all be accurate.
But they would be underselling the value of the book.
Adam highlights the landmines – the things we all do to take short cuts – that inevitably negatively affect our diabetes. Often we think these short cuts save us time or ‘fix’ a diabetes problem quickly, only to find that they often turn out to be time consuming and actually end up causing more problems than the original one we were trying to address.
The bright spots are suggestions on how to positively and sustainably live with diabetes. They are easy to manage, and don’t ask for a significant shift in thinking, or large financial or even time investment to make the changes.
The book is segmented into four sections: Food, Exercise, Mindset and Sleep. This makes it super easy to use as a reference book and dive into it to help target specific areas that you want to think about. I’ve read the whole book through twice now, but keep going back to the sleep section, because I realised that it is an area of my life that I really need to address now.
I honestly wish that the day I’d been diagnosed with diabetes I’d been handed this book. I wish I’d had it on my shelf all those years as a resource to refer back to in moments of burnout or no motivation, or when I needed a little push to encourage me. I wish I’d been able to tap into Adam’s wisdom on specific issues when I was struggling with being in a food rut that was affecting my glucose levels, or in a funk because my mind was not clear or focused.
I’m so glad to have it now and have already made some changes which have been very positive. It might be 19 years late to the party, but this book will be on my shelf to be pulled down very, very often.
It doesn’t matter how long you’ve had diabetes; you WILL get something out of Adam’s book. But if you or a loved one is newly diagnosed, I would recommend you stopping whatever you are doing RIGHT NOW and getting a copy. You can buy a paperback copy here, or download the PDF here, naming your own price.
If you would like to win a copy of Bright Spots and Landmines, I can hook you up! Adam generously provided me with some copies when I caught up with him recently at ADA. Just click here and tell me in 25 words or fewer why you would like to win a copy of Bright Spots and Landmines. But chop chop! You’ve only got until the end of the weekend to enter.
One of my bookmarked pages is this:
This is a public page and lists all open consultations from the Australian Government Department of Health.
I know. I live the exciting life.
I have it marked and check the page regularly to see if there are any consultations that are of interest to me and on which I would like to comment. The consultations I respond to are not necessarily diabetes-related, but then, my health is not always diabetes-related…
At the moment, however, there is a very diabetes-related consultation underway and I would encourage anyone affected by diabetes to take a few moments to fill in the survey.
The Department of Health is currently evaluating the FreeStyle Libre, specifically to consider whether it is suitable for subsidisation under the NDSS. (The consultation is happening following a submission to the Department for subsidisation of the product.)
An Assessment Panel will be set up to consider the submission, but before they meet, the Department is seeking comments from consumers and other stakeholders about the product.
You can take part by completely a very short survey. You need to provide some personal details (name, address, phone number and email address). There is one comment box for thoughts for the Assessment Panel to consider. You are asked to think about how diabetes impacts your quality of life; if you’ve used the Freestyle Libre, did it improve your diabetes management; what are your personal experience of using the device and any benefits or negative affects you may have noted; If you’ve not used the device, what would you expect it to do if you did. You are also asked to write about other devices and tools you use to manage diabetes and think about how they benefit your management.
Some things to consider when filling in the consultation survey:
- Be honest about your experiences. You don’t have to have used the Libre to complete the survey. This is for anyone who is affected by diabetes and would like to weigh in on whether or not they believe the product should be subsidised.
- Stay on topic! This is about Freestyle Libre, so it’s not really the time to say that you want a fully-funded artificial pancreas delivered to your door now please. (And just further to that, it’s not the time to lobby for the expansion of the NDSS CGM Initiative. Comments that are not relevant to the issue at hand usually get ignored. Stay.On.Topic.)
- Try to use really clear language and don’t assume the person reading what you have written knows a great deal about diabetes. It’s likely that the Assessment Panel will include people who do know a great deal about diabetes, but the people from the Department conducting the initial consultation may not. So, don’t use abbreviations and acronyms, or jargon and diabetes slang.
- This is the opportunity for people with diabetes to have their say. Health professionals are also invited to participate in the consultation, but obviously, their perspective is going to be very different to someone who is actually wearing the device to help manage their diabetes. What you have to say can’t be found in glossy brochures or opinions of those working with diabetes. Use the opportunity to really share your thoughts.
- So, your experience about actually wearing the device, the accuracy of it, how it has changed your diabetes management (if at all), why you do or don’t like it, the devices convenience (or lack thereof), the best and worst aspects of it are really, really valuable.
The consultation is open until 17 July and can be accessed via this link. Please share with anyone you think may be interested.
DISCLOSURES
None! I’m sharing this information because I know a lot of people who are interested in this device and because many are frustrated at how expensive it is.
Diabetogenic 
