With my most sincerest apologies to Neil Gaiman, this is gentle reminder that I really needed today. Happy Wednesday, everyone.
Recently, I heard myself saying to a friend with diabetes that she really didn’t need to – and shouldn’t – apologise for diabetes, specifically, for needing to stop to check her BGL while we were mid-conversation.
‘Don’t apologise,’ I said to her. ‘It’s just part and parcel of diabetes.’
And then, I heard how often I do it.
‘Sorry – I just need to treat this low.’
‘Sorry, darling. Would you mind just grabbing me a juice box from over there?’
‘Sorry – I had a lousy night with crap high BGLs and hardly slept. Would you mind repeating what you said? I missed it. Sorry.’
‘Sorry – my pump is wailing at me. Let me just see what it wants.’
‘Sorry – my CGM is alarming. I need to calibrate…hang on a sec…’
‘Damn. I’m out of insulin. Sorry. I just need to refill my pump.’
‘Sorry for munching on these glucose tabs. I’m okay – just trying to ward of a low.’
‘Sorry. My brain is foggy! I think I might be low….’
Sorry. Sorry. Sorry. Sorry. Sorry. Sorry. Sorry. Sorry…
Why am I apologising for my messed up beta cells? I didn’t destroy them. (Actually – technically I guess that’s not true. My own body did kill them off. But it wasn’t deliberate on my part…This is all getting rather confusing, so let’s just agree that it’s not my fault that I have diabetes.)
Why do I say sorry for having to treat or manage or address the health condition I live with all day, every day, and do things that I only do to keep me well…and alive?
I’m not alone here. Many others do the same. I’ve sat in rooms with friends having nasty lows and heard them apologise over and over again as they treat and will their glucose levels to rise. We do it amongst ‘friends’ – others from our pancreatically challenged tribe who get it better than anyone else, and we do it with those who are not living with it.
When I apologise for my diabetes, I am making it sound like I have done something wrong – intentionally or accidentally. And that is never the case. I’ve never intentionally been low or high. And even if it could be considered an accident or something I could have prevented – perhaps over- or under-bolusing or forgetting to refill my reservoir before leaving home – it was never done with the aim of being disruptive to others. Or myself for that matter.
What I am also doing is apologising for diabetes inconveniencing others. And I am also saying it is something shameful. But I can’t do anything about having diabetes. And it is not shameful. I am certainly not ashamed of having diabetes.
I wonder if it is a case of good manners going too far. Manners are very important to me – I have instilled this in our kidlet who is frequently complimented for her beautiful manners. But manners are about courtesy and respect – and that respect is for yourself as much as others. I think I am actually being quite disrespectful to myself when I apologise for having to ‘do diabetes’.
My body, which really doesn’t like itself, is not a reason for me to say sorry. I do enough managing diabetes without having to feel the need to repent all the time. So I’m not saying sorry anymore. Well, I’m going to try, anyway!
‘Do you eat a lot of carbs?’
This was the question that had me stopping and thinking about my diet and how it has changed in recent times.
It is also a little bit of a taboo topic and I feel a little odd writing about it here. I really don’t care about being judged by others when it comes to my diabetes decisions, however for some reason, food attracts so much attention and judgement, I am somewhat reticent to write this post.
Firstly, and most importantly, please do not take this as medical advice. Or nutritional advice. In fact, there is no advice here at all– just some thoughts about what I do that seems to work for me. I am not a healthcare professional of any sort whatsoever. Please keep that in mind while reading.
I should also say that I had no intention to change my diet. It was just one of those things that happened slowly over time.
So what’s different? Well, mostly, it has to do with my carb intake. I eat considerably fewer carbs these days than I have in the past. Why? No idea. As I said, it wasn’t planned. It hasn’t been part of a no or low gluten diet; it certainly hasn’t been part of a weight loss strategy. And it utterly has not been part of an intentional low carb (high fat or otherwise) plan.
Honestly, I get a twitch in my right eye when I hear talk about low carb, because anyone who wants to suggest that I should stop eating doughnuts is, in my opinion, in need of a cup of tea and a lie down.
But even with this aversion to the LC idea, the thing I have found is that, by default, I have adopted a far lower carb diet than is recommended by dietitians and other healthcare professionals.
In my case, where this is has been most obvious is not in the ‘sometimes foods’ I eat. When I want a doughnut, I still eat a doughnut. Because as much as I write about them here, I actually only eat them occasionally. And that hasn’t changed. On the occasions I feel like a doughnut, I eat a doughnut.
The real change has come in the day-to-day foods I eat. Some of these changes include:
- I cook and eat less pasta than I used to and when I do, there is more protein and vegetable-rich sauce dousing the penne or orecchiette or farfalle or macaroni.
- If I make a risotto – again, a rare occurrence – the vegetable and meat component has been significantly increased so that I am getting a lower carb hit.
- I eat breakfast only on the weekends (this has always been the case and always will be and that is all there is to it!) and will only ever eat half or, at the most, one slice of toast that comes with my eggs, bacon and avocado (or whatever I have ordered).
- I don’t snack on carb-y foods – I’m now more likely to grab a handful of nuts than a piece of raisin toast.
- I’ve stopped thinking that a meal is not a meal unless there is a large serve of carbohydrate on my plate. This was tough, because old habits die hard and the very first dietitian I met, the day after I was diagnosed with diabetes, insisted I eat ridiculously huge quantities of carbs with every meal and I stuck to that for a while.
- I prefer sugar to artificial sweetener in my coffee, but instead of two sugars, I’ve cut down to one and sometimes, none.
Am I eating a low carb diet? Well, strictly, no. Is it lower carb? Yes, you bet! The Dietitians Association of Australia website suggests that an ‘average adult’ should eat 310 grams of carbs per day. I can’t think of the last time that I ate that many carbs in a day. (Looking back through my pump boluses for the last couple of days, my total carb intake is well under 100 grams.)
So, how does all this affect my diabetes management? Mostly, it has shown me just how much easier my diabetes is to manage when I eat fewer carbs. Low carb days result in far smoother CGM lines. Fewer carbs mean less insulin, which means less likelihood of lows, which means less likelihood of rebound highs, which means I ride the glucose rollercoaster less frequently. It’s an equation that makes so much sense and, for me, it works because, overall, I feel much better.
Is it right for everyone? Hell no! It’s right for me now, but who knows what I’ll be like in a few weeks time!
So why the hesitancy to write about this? Diet is a highly personal issue. But there is undoubtedly a real sense of reluctance to enter a debate about how a diet that is not necessarily endorsed by dietary guidelines may be beneficial to managing diabetes. I have too frequently heard HCPs shut down conversations about low carb diets – often low carb, high fat – however there are more and more people with diabetes saying this way of eating works for them.
Is this a case of the science needing time to catch up with what people are doing? I think yes. But I am not a scientist or a dietitian and I certainly don’t understand the science behind diet. But I know what works for me. And that is really all that matters in this case!
As it turns out, I made mushroom risotto for dinner. This huge mound of six different kinds of mushrooms was cooked with chorizo and onion before being stirred through a small amount of perfectly cooked arborio rice. A huge bunch of baby spinach leaves were stirred through at the end of freshness and a touch of green.
The other night, I drove through the pouring rain to Geelong to speak at an information session for healthcare professionals about CGM technology. The event was run by AMSL, the distributors of Dexcom here in Australia (the disclosure song and dance can be found at the end of this post).
I sat on the panel with Dr Natalie Harrison, a terrific local endocrinologist (oh – how’s THIS for a bit of disclosure – we went to kindergarten together!!) and paediatrician and diabetes technology champion, Dr Peter Goss. I was there to bring the overall IQ of the panel down, share the ‘living with CGM’ story and be the point of difference between the glossy information presented by the CGM company.
On the left – the numbers of all readings in the glossy propaganda (it’s about 6.2 in our language). On the right – real life.
Both presentations by the doctors on the panel were enlightening. They clearly showed how CGM could be used in a number of different scenarios. The thing I particularly enjoyed was how both speakers are using this tech as tools of empowerment for the adult or child with diabetes – not for any other reason. Both repeatedly said that although in most of the cases they presented, there was a reduction in HbA1c, the biggest benefits to the PWD was improved quality of life. (I may have done a little fist pump each time they mentioned that!)
Examples included shift workers, tradies working on construction sights, exercise nuts, kids, adults, teens – demonstrating a terrific cross section of the diabetes community who may – and indeed have – benefitted from the technology. There was also a discussion about how CGM is useful in specific target groups and situations, with a considerable time of the discussion being about low carb diets and CGM. (And can I say just how refreshing it was to have this discussed with little judgement from the speakers. Too often LCHF or just LC is dismissed by healthcare professionals without any willingness to accept that there are many people who are using this as part of their diabetes management and achieving excellent results.)
Dr Goss also mentioned how useful CGM tech can be for families where ‘dead in bed’ is a real concern because it can show families just how stable glucose levels usually are overnight, and therefore may help reduce a lot of the anxiety parents feel. (There was also a discussion about the significant emotion around DIB and how it is frequently overplayed. This is really important because while one person dying from DIB is one person too many, it is thankfully a very, very rare occurrence (as shown in all local and international literature). The fear and the risks need to be in perspective and unfortunately, that is not the case at all times, and the anxiety it is causing is unnecessary.)
After the official, smart speakers finished, I stood up. At this stage, the AV equipment had called it a night, so I put aside the few slides I had developed, and shared a few things.
I spoke about why I love this technology and why I choose to use it pretty much all the time. But I also spoke about its limitations – specifically the emotional and psychological barriers that are of concern. I raised the point that reluctance to use CGM by PWD could be for myriad reasons and to never assume what that reason is (this was in direct response to the suggestion from one of the speakers that often PWD refusing to wear CGM have something to hide). I suggested that for some, it is a huge step to agree to wear something attached to one’s body all the time – something that provides a lot of confronting information, beeps, alarms and can be downright annoying. This is not a small consideration – it is big!
I also spoke about the necessity to customise just how PWD use the technology. I explained how I turn alerts on and off, depending on how engaged I am with my care. I could see that didn’t sit well with everyone so I tried to explain that being able to deal with – and respond to – a couple of alerts, is better than having the all on and doing nothing because it is too overwhelming. Or simply not wearing the technology at all.
And I also spoke about how what I do to make CGM work for me, even if it is against the direct advice of the company – and HCPs. Case in point, my sensor and transmitter are on my arm at the moment. I have found that recently, I get better readings and the sensors last longer if that’s where I site them. I also leave the sensors in for a lot longer than the suggested 7 days. (Peter Goss concurred with both those statements saying that most of the children and adolescents he sees prefer to wear sensors on the upper arm. And there was a bit of a ‘who leaves their sensor in the longest’ discussion, with Dr Goss sharing that the record in his clinic is 26 days. I did disclose that while I have a mental block about going beyond 21 days, I know people who have doubled that!)
This is why it is important to hear directly from people who use the technology. While both doctors shared case studies, the focus was really on how CGM helped smooth out glucose lines. And of course that’s important. But equally important is the way we manage the technology in our life, because if we can’t find a way to get it to work for us, we won’t wear it. After the presentations, a couple of HCPs thanked me for being there and said that I had raised a number of things that they just had not considered before – all things that are usually missed when a PWD is not part of the discussion.
And it served as a reminder again that even though it is terrific to have people with diabetes represented in some ways in presentations at these sorts of events (or conferences, meetings etc.), the only way to hear the real story is to hear it from someone living it.
Thanks to AMSL for inviting me to speak, but more so, for putting a person with diabetes up there on the panel. We belong there.
Disclosure
I was invited to speak at this event by AMSL Diabetes, Australian importers and distributors of Animas and Dexcom. I was provided with product to speak at this event…. The team from AMSL did not hear or see my presetantio prior to the evening and the only direction I was given was to share my experience of using Dexcom. Which I did – the good, the bad and the ugly.
(For the record, although not really relevant, but I’m disclosing the crap out of everything here, I also use an Animas pump. That was wholly paid for by my private insurance company whose premiums I pay each fortnight through clenched fists of frustration as their premiums continue to rise. I also pay for the ongoing consumables needed to drive said pump.)
I am not the sharpest tool in the shed sometimes. In fact, there are many times that I wonder how I have managed to get to this stage of my life without doing some permanent damage, or embarrassing myself so monumentally that I could never leave the house again without wearing a disguise.
But even though I am sometimes a sandwich short of a picnic, I am still able to decipher between high and low blood glucose levels and understand what constitutes in range, below range, above range, stratospherically-above-range-so-do-something-now and about-to-plummet-to-new-depths-if-you-don’t-mainline-glucose (the last two are highly technical terms).
Yesterday morning, I woke up with a start and within 2.1 milliseconds, realised I was low. Really low. I reached over to my bedside table and scanned the Libre reader across my arm to this:
There is some really useful information on that screen. The large font-size numbers confirmed my ‘I.Am.Low’ predicament. The graph is also useful (perhaps not while my glucose is sitting at 2.3mmol/l, but later on I was able to look at it and try to work out the reason for the rapid drop from 1am). The red line below my target range is also useful because it shows how long I had been floating around there before I woke.
The piece of not so useful information is the alert in the top left hand corner. A warning sign with the words ‘Low Glucose’
This is not only on the Libre. If I try to bolus on my Animas pump when my BGL is above range, the delivery steps are interrupted so that I can be told that I am high. I know, Sir Pump-a-lot. That’s why I am pressing buttons. I need you to do your thing and give me some insulin. It makes absolutely no sense to halt the process right now to remind me I am high.
I know I sound like I am whinging for the sake of it. I could just ignore the messages and focus on the fact that this great tech is helping me manage my diabetes is a really useful way.
But the problem with these little messages is that they are a constant reminder of how frequently I am out of range. It’s not enough just to see the out of target number, but my devices then do a little ‘ner ner ni ner ner’ song and dance about it too.
It makes me feel that a lot of time I am messing up and failing – because a lot of the time my numbers are not where they need to be. The last thing I need is to feel that my bloody diabetes tech is judging me. There is already enough of that in diabetes.
In one of my #DBlogWeek posts last week, I wrote that for the sake of my own mental health, I have learnt to not compare myself with others.
I was thinking of this the other day when I was involved in a conversation with a woman newly diagnosed with diabetes. She told me that she was really upset at the response from a close family member who, when told about the diagnosis and how distressed she was, responded with ‘It could be worse. At least it’s not cancer.’
I’ve had that said to me. Several times. And it is one of the most offensive things I have heard. I don’t really know how to respond to it, because it’s true, I don’t have cancer. But I do have diabetes and that is pretty bloody horrible sometimes. (For the record, I equally dislike the idea of responding with ‘At least it’s not cancer. There is a chance of remission with cancer; type 1 is for life…’)
I get just as annoyed when it happens in our community. ‘At least it’s not type 1,’ is something I have heard said to people with type 2, diminishing the challenges they may face.
When I was anxious about my impending cataract surgery a few years ago, I was told ‘It’s nothing. At least you don’t have to have laser or have your eyeball injected.” Again, that’s true. But I was still terrified and had every right to be.
When discussing a nasty hypo ‘At least you didn’t lose consciousness and wake up to a roomful of paramedics.’ Sure, I remained conscious throughout the low I had last week. But I needed help to treat it and it happened in front of my kid. She was scared which really upsets me and makes me feel guilty.
When our experiences are belittled or minimised, it means we may stop sharing them. No one wants to be told they are being a drama queen and that it could always be worse. Of course it could be worse, but that doesn’t mean what you are dealing with doesn’t suck.
I have had diabetes for 18 years now. I have not had to deal with debilitating complications. I have not had to spend weeks in hospital because of my diabetes. But does that mean that my fears and concerns and anxieties are any less relevant than someone whose experiences are different?
And that’s why you will never hear me say to someone newly diagnosed ‘At least you have just been diagnosed. Just wait until you have had diabetes as long as me and <this or that> happens,’ because everyone’s experience is different and that newly diagnosed person may have their own concerns at that particular time. Or not. Which is also fine.
I had a healthcare professional once tell me that at least I didn’t have diabetes ‘too terribly’, because I worked, had a child and travelled. It was one of those (incredibly rare) moments where I was stunned into silence. I was torn between wanting to say ‘Well, surely that makes what I’ve achieved all the more incredible‘ and stabbing her with a fork. I said (and did) nothing.
There is no ‘at least...’ when it comes to diabetes. There is no discussion about how it ‘could be worse’. Because the truth is, it could be a whole lot better. I could NOT have diabetes.
I have now been wearing the Freestyle Libre flash monitor for ten days and have some initial thoughts to share.
I wasn’t sure what to think of the Libre before using it. I had heard stories of people absolutely loving it and other tales of people not really being all that impressed. I was certainly excited to try it, as I am with any new technology and was interested to see how my experience compared with friends who had already had a go.
I went in with a very open mind, albeit a mind that has been completely and utterly won over by Dexcom and CGM technology.
Overall, I love this device and can see why, where and how it would be brilliant for some people and now, after a week and a half, have a better idea of where it fits in my diabetes management.
The Good
The insertion was simple. I could go into a whole lot of detail about how it works and what it looks like, but a very clever young lady has made a very cool video of it and she is far cuter than me. You can see it at the end of today’s post. (The caveat to this is that Ms Pumplette in the video is under 18 years and, at this stage, the Libre only has TGA approval (i.e. in Australia) for adults.)
I will just add that it was completely painless for me. As in: Did. Not. Feel. It.
The device is discreet. I have mine attached just under my upper arm, so it is completely hidden, even when wearing a short-sleeved shirt. This placement also means less likelihood of ripping it off on a doorframe or similar. The profile of the Libre sensor is fabulous – tiny, flat and completely unobtrusive. (But if you would like to pimp it, of course there is a cottage industry making lovely patches to stick either over the top of the white disc, or to augment the tape around it.)
I have found the device to be incredibly accurate – when compared with both my BGL meter and Dex. We were warned that new sensors could take up to 24 hours to start to read accurately, however I found the new Libre sensor to sync with my devices as soon as the 60 minute warm up period was over.
Obviously, one of the biggest selling points of the Libre is its convenience and there is a lot to be said for the incredible ease of just scanning a device over my arm rather than doing a BGL check.
I had a couple of Dex-less days and found that the Libre was brilliant, especially considering that within 2 hours of my last Dex sensor dying, I had a horrid hypo that left me feeling vulnerable and scared and more than a little fragile. I had the Libre scanner in my back pocket (replacing my iPhone as the reader for my Dex) and was scanning every 30 minutes or so which was very reassuring.
The less good (I am reluctant to use the word bad here)
The cost is going to prove prohibitive, with sensors coming in at $95 each, which is above both Medtronic and Dex sensors. Being factory set, there is no possibility of extending the 14-day sensor-life. I’ve not used Medtronic sensors for a while now, but from what I read, most people get a max of 14 days out of theirs. I get about 21 days from a Dex sensor – at which point I rip it out because I start to get a little grossed-out. (But I do know people routinely leave theirs in for longer.)
The reader/scanner for the Libre is $95 and is rechargeable. This is certainly a point of difference when comparing with CGM transmitters, which have a battery life of either 3 or 6 months (depending on the product you use), and cost significantly more. (Add a CGM receiver to the cost and the price goes up a whole lot more.) This is where the affordability of the Libre runs rings around the CGM devices.
I just want to quietly flag supply issues which I hope will not be a problem here in Australia. The Libre is not quite available for purchase here in Australia, but is only weeks away. At DX2Sydney, I asked if there are any supply concerns similar to those that plagued the product’s release in the UK and EU and was assured that there really should not be here in Australia. I suspect that part of the reason the launch was not immediately after TGA approval was to make sure that there would be product available.
The verdict for me
So, is this a product I would continue to use? Well, yes. And no.
I really like and I trust the Libre. Accuracy for me is THE most important measure when it comes to any diabetes device (whether that be measuring my glucose levels or delivering insulin). From that perspective, I found this to be a winner.
But the lack of alarms is a problem for me. As someone with impaired hypo awareness, being able to catch those lows is important and I can’t do that without a system that warms me. The Libre doesn’t do that.
HOWEVER – this is not a CGM device and therefore, I understand I need to frame it in that way. This is a replacement for BG monitoring and BG monitors do not alarm and I have no expectation that it will. Despite being a sensor, the Libre is meant a substitute for finger pricks and meters. Currently, I check my BG twice a day to calibrate my Dex. If I was not wearing CGM, I would absolutely use Libre over a BGL meter any day.
Pumplette talks Libre
DISCLOSURE (again!!)
DX2Sydney was being coordinated and run by Abbott Diabetes Care. The costs for me to attend the two day event (travel, accommodation, meals and transfers) were covered by Abbott. All attendees received Freestyle Libre products (one scanner and two sensors) so we could trial the new device.
There was no expectation that I would write about the event or my thoughts of the device. Abbott may have paid for me to attend, but they did not pay for my words on this blog, social media activity or anywhere else. I like to share, so that’s why I decided to write about my experience.
It’s the final day for the 2016 #DBlogWeek and I have so loved reading what people have shared about the terrific topics for this year. A huge thanks to Karen Graffeo – who not only organises the week, but sorts through heaps of suggestions (including a suggestion from a certain person who may or may not be quoted in this blog today who was, apparently, hoping for naked blogging) for the community before deciding the topics. I have been averaging five hours of sleep a night reading all the terrific posts. Big sleep-ins and afternoon naps for me this weekend!
Today’s prompt: Let’s round out the week by sharing our best diabetes tips and diabetes tricks. From how you organize supplies to how you manage gear on the go/vacation (beach, or skiing, or whatever). From how you keep track of prescription numbers to how you remember to get your orders refilled. How about any “unconventional” diabetes practices, or ways to make diabetes work for YOU (not necessarily how the doctors say to do it!). There’s always something we can learn from each other. (Remember though, please no medical advice or dangerous suggestions.)
I frequently write about diabetes tips and tricks. In fact, this post from a couple of years ago shared some ideas that still help me get through the myriad diabetes tasks required on any given day.
So for today, I thought I would go to someone else who might be able to provide some ideas that are different to mine.
Many of you will be familiar with The Grumpy Pumper. I’m lucky enough to have met him a few times in person and chat with him regularly and he would like me to describe him as a grumpy bastard. So to keep him happy (grumpy-happy), I will. He also also wants people to think he doesn’t smile (there may be evidence to the contrary…). He generally looks like this:
It’s possible I had consumed a lot of bubbles when this pic was taken.
But he has a very Zen quality that may come as a surprise to many. He has an attitude of not sweating the small stuff and just getting on with diabetes. He also has an uncanny ability to make lights flicker from across the other side of the world, and turn skies grey when he is arriving in a new country. (These superpowers are quite terrifying and probably could have been the subject matter for an episode of X-Files.)
Anyway, I asked him ‘What are Grumpy’s tips for dealing with diabetes crap’ and he told me he makes lists. The lists are:
The world according to Grumps.
I really love this attitude because it completely and utterly flies in the face of how I usually deal with things. I find that I get far too stressed about the things I can’t change or influence – both in my diabetes life and the rest of my life.
So tomorrow, I am going to go and buy a fuck it bucket and start to fill it up.
Not sure that my preferred fuck it bucket is exactly what Grumps was talking about…
Day 4 of #DBlogWeek and I have now read every single post from yesterday about diabetes and language and I was so interested to hear all the different perspectives. Not slowing down yet! There are still many blogs to read!
Today’s prompt: Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!
Before I was diagnosed with diabetes, I had very limited experience dealing with healthcare. I remember those days fondly because now, with my frequent flyer status firmly entrenched as Platinum, I feel that I have had far too much experience.
However, for the most part, the frequent flyer program I am part of isn’t that bad because I have been able to tailor it to my needs. I have selected a team of HCPs to meet my needs and respond to my particular quirks.
So, I am going to turn today’s topic on its head a little and write about the really positive things that I encounter in my healthcare.
- The respect I receive at all times from the HCPs I have chosen.
- The access I have to my team. They have kindly handed out their after hours contact numbers and are happy for me to reach out to them via email. I have never taken this for granted or abused it and only ever have contacted them when I have absolutely needed it.
- Because I see the same HCPs every time I visit (because I pay to see them privately), there is no need to go back and start from the beginning, explaining who I am and my convoluted medical history. They know me; they know why I am there.
- Not one of my HCPs believes that diabetes is the most important part of my life and therefore understands that there are many times I will show up to an appointment unprepared. And there is no judgement from them for this.
- My HCP team also understand that diabetes is far more than a condition of numbers and are incredibly aware of the emotional aspects of living with diabetes. My endo and GP have been quick of the mark on several occasions suggesting I see a psychologist. For this, I am very grateful.
- A couple of my HCPs know just how valuable peer support networks are. They ‘get’ that the people living in my computer are as critical to my diabetes wellbeing as my visits to them. Even better, I know they pass this information on to other people with diabetes they see.
- I have an ‘indefinite referral’ to my specialists, which means I don’t need to see my GP each year asking for another referral. I also have ‘indefinite diabetes’, so this is useful!
- Our public health system is far from perfect, but when I have had to use it, for the most part it has been brilliant.
- Our National Diabetes Services Scheme (NDSS). I was registered the day I was diagnosed which meant that I have had access to subsidised diabetes supplies since then. It still costs money (although syringes and pen needles are free), but it is heavily subsidised.
- And while talking about the NDSS – once registered, that’s it. There is no need to prove that I still have diabetes or that I still need access to strips or pump consumables.
- Insulin prescriptions are easy to fill – a simple call to the pharmacy and the next day it’s waiting for me to collect for the total of around $40. And that lasts me about two and a half months.
- Insurance in Australia is nowhere near the nightmare issue it is in the US. I choose to pay for private insurance for the simple reason that I want the full cost of my pump covered and I want to be able to choose the HCPs who treat me. My premium is not in any way affected because I have diabetes nor can I be refused cover.
Of course, there are things that could be better. Access to technology is one of those things – and by that I mean easier, more affordable access with a HCP workforce equipped and educated to work with us. We need swifter and smoother access pathways too, so that when new tech or drugs arrive on the market, they are approved for use and being utilised by PWD as soon as possible.
Outside Australia, there is much to do to improve access to basic diabetes needs.
And finally, what I believe will go a long way in improving the healthcare experience for people with diabetes is to better consult with us. We need to be part of the development process of systems, programs, services, devices. There needs to be better listening of, and engagement with us. Because only then will the people creating the healthcare experience we have to use understand what we truly need.
It’s day 3 of Diabetes Blog Week, with thanks to Karen from Bittersweet Diabetes. And it’s hump day, so the week is half over. I am on my way to Sydney for meetings all day, but will be making sure that any transit downtime is spent finishing reading yesterday’s posts. And today’s too.
Today’s prompt: There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I’m willing to bet we’ve all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don’t care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let’s explore the power of words, but please remember to keep things respectful.
I have written about language many, many times here. So today I thought I’d vlog. Happy viewing.
And here it is again: the Diabetes Australia Language Position Statement.
Diabetogenic 