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Hi, my name is Renza and I never update software, operating systems, apps or anything that needs updating on anything. If I needed some sort of personal software update each year upon my birthday, I’d still be running whatever I was using when I was seventeen. I don’t have auto updates set up because 1. I’m an idiot and, 2. I used to, and once that caused problems with…something. Can’t even remember what, but obviously it left some deep scar somewhere and now I won’t do it again.
Most days, this apathy makes no difference to anything at all. I eventually get around to updating and on I go. No big deal.
Except for when it becomes a big deal. Because then I find myself #LooplessInMelbourne.
On the morning of Good Friday, my Riley Link died. Let me set the scene here by saying my RL had been dying for some time. This was not something that ‘just happened’. It had started needing a charge around mid-afternoon as well as the overnight charge it had been getting since I started using it in August 2017.
But on Good Friday, it decided that was it. No more charging. My Loop turned red and that was it. RL dead. Done. Gone. Finished. Just as it had been warning me was likely to happen for a few weeks.
Now, someone smart would have thought this through as soon as the RL started to need extra charging, and understood the following: 1. RL needs replacing, 2. make sure back up is available, 3. double check Loop docs for how to swap out old RL for new one, 4. follow instructions.
I got as far as step 2, and that was it. I was supercilious in my back-up planning skills and took my spare RL out of my diabetes cupboard, leaving it on my desk as though that was enough to miraculously sort everything. Idiot, thy name is Renza.
On that (not so Good) Friday I put all thoughts of sorting it out of my mind and set about my day. It was a public holiday, so I figured I’d fix it all later. I also thought it would be just a matter of switching RLs over.
Not so much.
Around midday, I sat down and read the Loop docs and immediately realised that I needed to update my Loop app to use the new RL. I’ve rebuilt the app before and I know it is a simple process.
I scanned through the docs and saw that I needed to make sure that all operating systems and apps were up to date. Suddenly every single update notification that had popped up in the last year flashed before me. So did every post, plea, warning to update everything from Katie DiSimone on the Looped Facebook page.
I set to updating my Macbook, iPhone and Apple Watch. Easily done. Then, I came to Xcode. And the wheels fell off. (Xcode is an app and needed to build Loop.)
I don’t think I’ve updated Xcode since I loaded it onto my Macbook, back when I first built Loop. I do remember it taking FOREVER to upload and install. The update took longer. The first time I tried to update, it took almost three hours to not work. The second time, it took four. By this stage it was late on Friday. Clearly, I was paying no attention to what was going on because when I saw that it had finished updating, I assumed that all was good and off I went to rebuild my Loop app.
Building Loop is simple because the instructions have been written for people like me in mind. Technologically hopeless, but eager to understand. They are step by step and, honestly, if you follow every step as laid out, you cannot go wrong.
So, off I went. Step by step. And then…
Red error message.
I read the errors page and tried all the suggestions, but the same error message came up. It was getting late and I was exhausted, so at 1 am, I went to bed. I was over it and figured that fresh eyes in the morning would do the trick.
I woke on Saturday and with those fresh eyes I realised straight away that Xcode had not updated. That’s right – the second attempt had failed too, and I had been trying to rebuild Loop using an outdated version.
As it turns out, third time’s a charm and while eating Easter lamb at my in-laws, Xcode updated successfully.
After lunch, I opened the new version of Xcode and followed the instructions to build Loop. That took under 5 minutes and no brain power or tech know-how (from me, that is – a lot of people had used a lot of brain power and tech know-how to make it so easy for me).
Shortly after, the Loop app appeared on my phone. I entered all my relevant info (another 3 minutes work from me) and then almost straight away my Loop turned green.
And I’ve been happily Looping ever since.
So, here’s the take home: Keep everything updated. If I had done that, the rebuild of Loop would have taken a total of 15 minutes. And most of that would have been sitting and waiting for Loop to re-install on my phone.
I was telling someone about this whole (actually rather boring) story the other day and a little smugly they said ‘That’s why I won’t use a DIY system. Sounds like a nightmare. They can’t be relied upon.’
But actually, that’s not the case at all. What is unreliable is me and my inability to do the basic updates that all our devices require. Our commercially available apps (such as Dexcom) require us to update occasionally. In twenty months of using Loop, I’ve updated the app once (when I got a new iPhone).
Being #LooplessInMelbourne wasn’t really a big deal. It did, however, remind me why I am a huge fan of DIYAPS as the right tool for me right now. And it also reminded me that I really am not much of a fan of DIYDiabetes. That’s really not for me at all!
Loop’s back, baby!
Some weeks in diabetes feel longer than others. This week has felt like a millennium. And it’s felt nasty.
I took most of the Easter long weekend off Twitter because there was some mean stuff happening, with the usual suspects rearing their bullying heads. I ventured in once but didn’t want to spend my weekend seeing what people were saying about my tweet. Apparently said tweet also wound up on Facebook, because being held up as an example of the hopelessness of the diabetes mafia on just one social platform wasn’t enough.
Whatever.
If I had to say something positive about it all, (being the Pollyanna type), it would be that I do appreciate the lack of passive aggressiveness of these bullies. They let you know where they stand – no Vaguebooking or subtweeting from them!
But then, I also lack subtlety. And so, here’s an unambiguous reminder for everyone. Because after the week that was, I think we could all do with a little bit of kindness.
Dr Jen Gunter* is a brilliant OB/GYN in the US, and she seems to have to spend a lot of time dispelling myths created by looney wellness gurus and Gwyneth Paltrow about things that help women’s health – most of which seem to involve shoving things up one’s vagina. Their non-science approach has included suggestions of inserting jade eggs, glitter and (most recently) garlic cloves in the vagina for all sorts of weird and not-so-wonderful purposes.
So, the good doctor writes blog posts and Twitter threads about why sticking ground up wasp nests (I’m serious) inside our vagina is a very, very bad idea. (I know – that should be self-explanatory. Alas, for some in this world, it is not.)
We get to do this in the diabetes world too. While I’m yet to see anyone suggesting inserting household items, bulbs or crushed up stinging insect homes into our orifices as a potential cure, there certainly are other myths that seem to regularly come our way and have people wondering if maybe, just maybe, they would work better than insulin.
They will not.
Cinnamon will not cure diabetes. I even have a little n=1 study to prove this. I ate nothing but cinnamon buns for two weeks while in Copenhagen and Stockholm and my diabetes did not disappear.
Okra water may have improved the glucose levels of pregnant rats (in one study), but it will not work as a substitute for insulin, so don’t load your pump up with it.
And while I can honestly say I have no interest whatsoever in any of the klusterfuck of Kardashians (I just created that collective noun for them), as soon as one of them trespasses into my diabetes world, you bet they become fair game and on my radar. This little gem from Khloe gets a regular show in diabetes presentations I give:
Myths and misconceptions everywhere! We may laugh about them, and share silly memes, but sometimes, they do more than just cause us to roll our eyes. Sometimes they can be a little more damaging.
Hello Easter, and hello myth that low A1c guarantees zero complications.
The reason this was getting a run was because Easter for many means chocolate, and chocolate is like kryptonite for some low-carbers. Out came their claims that carbs are a one-way street to Complicationsville.
Diabetes-related complications don’t work in a logical, or especially fair, way. There is no formula that you can go to that works it out for you and is accurate every single time. Much like there is no pie for low-carbers, there is no Pi for diabetes.
It would be great if there was. I would love something that worked like this all the time:
A1c <5% = 0 complications ever, ever, ever.
Alas, it doesn’t work that way.
Diabetes-related complications are fucked up for many reasons. Before we even get them, they can be terrifying. We live with this fear hanging over our heads and for some of us, that terror can be horrid.
They come with all sorts of blame and shame and judgement and finger pointing, plus a good measure of guilt. Isn’t that fun?
There are other factors at play that contribute to the development of diabetes-related complications. And we don’t know what they all are. That’s why we see examples of two people running the same A1c for the same number of years yet one has complications and the other doesn’t.
And then, if we are diagnosed with them, we need to readjust our lives to work around this new reality that can be debilitating. And that’s just the physical side of it – the psychological side adds a whole other level.
There is evidence to show that an in-range A1c lowers the risk of developing diabetes-related complications. We have that information and it is regularly and repeatedly banged into our heads. One of the first acronyms I learnt when diagnosed with diabetes (literally day 1) was DCCT!
I know that the idea of developing diabetes-related complications after ‘doing everything right’ and living with a super low A1c doesn’t seem fair. I also know that people are terrified about what diabetes may hold, so gripping onto a promise that the bad stuff won’t happen can be reassuring. We all want reassurance. We all want hope.
But a reduced risk does not equal no risk. Diabetes doesn’t work in absolutes. And people who think that it does are, quite simply, wrong. I really wish they would stop spreading myths about it. (That goes for you too, Khloe.)
*Dr Jen Gunter has written a book and it’s due out later this year. I’ve pre-ordered and you can too here. It’s called The Vagina Bible, or as it has become known in our place thanks to the fourteen-year-old kidlet’s wordplay: ‘The Vible’).
Twenty-one years of diabetes feels like forever sometimes, and I feel as though nothing surprises me anymore – it’s just same, same, day in, day out. And most days really are like that. But then there are moments that jolt me.
I had a moment this weekend that did just that. It felt familiar, because it happens occasionally. But it passes and I forget. I think that before this weekend, I’ve never really tried to work out just what it was that I was feeling.
But this time…this time I did.
Perhaps it was because I had four glorious days of long weekend and time to think, or maybe it was because diabetes was far more dominant than I’ve come to expect, thanks to thirty-six hours without Loop (which is a story for another time).
This feeling is like being in the ocean and being pushed under by an unexpected wave. I feel overcome and I feel that every single part of me is being caught up and I can’t escape. It hits me out of nowhere and as I’m being pulled under, it takes over.
It lasts no more than a heartbeat or two, and usually I just shake it off and get on with whatever I was doing.
But this weekend, I stopped and along with feeling swept up, I felt an overwhelming and complete sense of sadness descend upon me. I know I have diabetes. I have accepted it. I feel it living in me. But this sadness is matched with a realisation that this is it – I don’t get a chance to be without this ever again.
I’m doing a lousy job trying to explain this, and I don’t want to sound like I am in the midst of some sort of crisis, or about to sink into the depths of a period of burnout. I’m not there – or even staring it down.
This is just that fleeting moment of remembering that diabetes will always be present, and each day, it will rob me of some of my time, my mind, my headspace. It makes me feel sad when I think of this.
I was reminded that we do so much to just settle ourselves around all that diabetes demands of us. Some of that is physical rearrangement as we accommodate the devices and scars and paraphernalia that accompany this condition. But so much of it is how we think and feel. In the past I have not given this feeling a name, or allowed it to be any more than a passing flash – barely a blip on my consciousness. Maybe this time I permitted more because I could handle it and was ready and able to give it a place.
My body and mind are taken up so much by diabetes – I don’t want to give it any more attention. But this weekend, for more than just a minute – although not too much more – I gave name to this sadness that I feel. It passed and on I went. But it lives there now – or rather it always has.
If I see another article about ‘guilt free’ Easter meal ideas, or read about how people will ‘be naughty’ and eat chocolate eggs, I am going to throw myself into a vat of Lindt Bunnies and not emerge until next Tuesday. It’s everywhere – and even more prevalent on diabetes-related sites.
Is it any wonder that so many of us with diabetes have a fraught relationship with food? With so many judgement-laden words associated with the foods we eat, our diets, and eating during festive periods, it can seem impossible to not feel that everything we put in our mouths comes with some sort of grading.
I don’t know how many times or in how many different ways I can say that food doesn’t have a moral compass. There are no good or bad foods. There is no one eating plan that works for all people.
And more than everything – it is not okay to tell a person with diabetes that they should feel guilty for eating a chocolate Easter egg (or anything else for that matter).
Being diagnosed with diabetes does not mean that you are now open for business for comments, criticism, advice or condemnation about the foods you choose or choose not to eat. Your eating choices are not for public scrutiny. No one has buy-in on your food choices unless you ask their opinion.
We are programmed from when we are young to think of foods as a way to measure our virtue. Unlearning all that messaging is really, really tough.
And diabetes makes it so much harder because we see the impact of what we eat and how our food choices affect our glucose levels. CGM may provide countless benefits, but it also lays bare what we have eaten. But, just as our food choices are no one else’s business, neither is what that food is doing to our CGM trace (or reading on our glucose meter).
My hope for all my diabetes tribe this weekend is this: may you find some chocolate of choice (or not, if your choice is no chocolate). And may no one pass judgement on what you are eating, pass comment on your glucose level, ask you what you ate, tell you to eat only half a hot cross bun, or belligerently ask you if you have bolused for it.
So yes, let’s have a guilt-free Easter. But I don’t mean that in terms of cutting out what we want to eat, or being made to feel bad about it. I certainly don’t mean it in reference to being made to feel guilty because we have a higher glucose number than we would like to see. I mean let’s just free ourselves completely from any guilt associated with food, or the numbers following eating that food. That’s actually one thing I am in favour of completely restricting.
Easter baking plans…
This is honestly what I thought life had in store for me following my diabetes diagnosis twenty-one years (and two days) ago:
(Click for source)
The reality is, of course, very different. The reality is that I am healthy and absolutely not abstaining from things that bring me joy (see: Nutella). I’m still working on the long life part, and have every intention of making that a reality too.
If you are newly diagnosed (or know someone who is), find people who are doing this for real, not text book tales of a diabetes life. There is a lot of joy still to be had. I promise.
I have some illuminating discussions with healthcare professionals. After I’ve had an in-depth conversation, I find myself going over things they have told me and discover that I have always learnt something new about what it means to work in a system that is, in many ways, broken. I learn how their approach to healthcare changes year by year as they try to do their best for the people they see each day. And I realise that I never, ever could do their job.
Other times, I shake my head a little because I wonder how their understanding of the day-to-day challenges of living with a chronic health condition is so far removed from reality. In these cases it’s almost as though we are speaking different languages.
Recently I spoke to a group of HCPs about those differences. I focused on how we manage to fit diabetes into our busy lives in ways that HCPs never can imagine and how the neat text book description of life with diabetes is very different from the mess that we are trying to tame each day. I spoke about how what they say can be read in a multitude of different ways by those of us on the other side of the consultation, and to think about words carefully. And I spoke about how although some education of HCPs about diabetes suggests that there is a one size that somehow fits us all, the truth is that we require our education to take into consideration every size and shape possible and for it to be delivered accordingly.
A doctor came up to me afterwards and thanked me for my talk. ‘Thanks for making me think differently about some things,’ she said. I loved that she said that, and I told her so. ‘Actually, that’s always one thing that I hope to get when I hear someone speak about diabetes – a new perspective or way of thinking about something that I think I have all worked out.’
We chatted a little about what she’d heard that had surprised her and would she would now be thinking about in other ways. I may have high fived her when she said that she would now be taking a lot more care with the language that she uses. ‘I had no idea that what I was saying had such stigma attached. I honestly thought I was saying the right things. I never meant for people to feel blamed, but I can see now how I could have come across that way.’
That’s been one of the challenges of the #LanguageMatters movement in diabetes. As we’ve tried to bring HCPs along for the ride, we’ve had to do it in a way that doesn’t make it sound like we are berating them. I do and will continue to call out language that impacts on PWD negatively because it does matter. Language has the power to make us feel like we can take on diabetes or be defeated by it; it can make us feel like we are doing all we can and that is enough, or that we are failing and will never do enough. Again, for those down the back – language does matter. But I truly have never believed that HCPs use language with any malice or intent of harm. It’s often just because they repeat the words and phrases that have always been used.
I explained this to the doctor and we spoke about how to get the message across in a way that highlights and promotes collaboration. After we’d been speaking for about 10 minutes, she said ‘I have a question for you,’ I nodded, eager to hear what she wanted to ask. ‘What’s the best kept secret in diabetes?’
I was startled. What an interesting – and frankly brilliant – question. I’d never been asked that before and I wanted to think about it a lot. Poor woman – I’m sure that she just wanted some sort of quippy response and to be done with it so we could go home and eat dinner.
‘Wow!’ I started, excitedly. ‘I love this. Are there any secrets to diabetes?’ I started a checklist, going through some ideas. ‘Is it peer support? For some reason, a lot of people don’t know just how widely available this is. Or maybe it’s how people can drive their own healthcare by setting the agenda. I frequently have people tell me that they just do what their doctor tells them (or rather, say they will) because they didn’t realise that healthcare could be an open and joint dialogue. In diabetes, maybe it’s all the clandestine DIY stuff that is going on which is so apparent to those of us who play on Facebook and Twitter, but maybe not to those who are not online as much. I know it’s NOT cinnamon. Actually – maybe it’s the whole thing about how when living with diabetes, or other chronic condition, our mental health is rarely taken into account, so perhaps understanding that and being referred to relevant services is the secret. It happens to so few of us…’
I stopped, because I could sense that there was so much I wanted to say, but I truly didn’t have an answer. ‘I don’t really know,’ I sighed. ‘I wish I did. I wish there was one…’
We said our good byes and I started to walk away before the doctor called after me: ‘You know what the best kept secret in diabetes is?’
I spun around. ‘What?’ I asked. I admit that I was hoping for a key that was going to unlock the mysteries of diabetes and suddenly make it a lot easier to live with.
‘You,’ she said. ‘And others like you. If only doctors like me took the time to listen to you all we would know a lot more and probably do a much better job.’
I smiled at her. ‘We’re not really a secret,’ I said. ‘We’re actually quite out there. You’re just not looking in the right places. Or asking the right questions.’
I gave her a little wave and left the room.
Dear Pancreas
For the last twenty-one years, part of you has been living rent free in my body doing…well…doing bloody nothing.
If I could performance manage you out of there, I would. Alas, I cannot. But here is the performance review I would give and the things I would like to say (with illustrations from Effin’ Birds).
As it stands, it’s been a while since the whole functioning beta cell thing happened.
In fact:
And…
Just an idea, but…
I’d really like to know…
And was wondering if you could perhaps…
But…if the last twenty-one years is anything to go by, I’m guessing that not much is going to change any time soon.
So, we’ll just keep going with this?
Yep?
Here’s the thing: the last twenty-one years have been pretty rough at times. But I’ve managed. I have no idea what I am doing most of the time, and spend a lot of time with a confused look on my face, or saying…
But that’s okay. Because along with the understanding and acceptance that I may never, ever truly be good at diabetes, it turns out that I am managing.
So, dear pancreas. As you were.
And on I’ll go. As I have been. Just like this…
Effin’ Birds is the sweary joy you need in your life. After I found them last year, I wrote this piece because, I found that there is a picture for pretty much every diabetes moment imaginable.
Follow them on Insta here and Twitter here. (Obviously, this is not for people who are offended by obscene language. I am not one of those people. Neither is my kid who takes great delight in bringing out our set of Effin’ Birds playing cards whenever she has friends over. I apologise unreservedly to those friends’ parents.)
Look! A t-shirt that explains what I am made up of:
Insulin and coffee: that pretty much sums it up.
Some days it makes sense to wear diabetes on my sleeve (and chest…). You can get your own by clicking on the image and going to the The Diabetic Survivor‘s e-shop. Lots of fun stuff to check out, including tees, bags, phone cases and more. I’m a bit taken by the ‘Dead Pancreas Gang’ merch.
I bought this shirt myself because it’s cute and I like to support folks in the diabetes community.
I regularly say that I wish I had an assistant to take care of all the diabetes admin. I’d like to be able to hand over all the scheduling, paperwork and the general keeping track if it all that takes time, brain power and forces us to find room that those not living with diabetes can dedicate to making sure they remember if there is milk in the fridge or when the new season of The Good Place starts.
It would be a thankless job, and I doubt that anyone would be interested in doing it, but I can dream.
A couple of weeks ago, Diabetes Australia officially launched KeepSight, the first ever national eye screening program for people living with diabetes. It’s actually a super easy concept: PWD register to be part of KeepSight and then receive reminders when it is time to have an eye check. No more needing to remember the last time you had a check-up.
This is similar to the cervical screen program that has been around for a number of years now. I have relied on reminders from that program to alert me when it is time to make an appointment for a screening check. KeepSight will help us keep track of our eye checks.
I could give stats about the number of people who are missing out on regular eye checks, and even more stats about rates of diabetes-related eye complications. But I won’t. Because that is not what is getting me excited about this program.
I’m excited because this is one of those simple ideas that goes towards making our lives with diabetes easier. And, quite frankly, there’s not enough of that happening!
Click on the link below; it takes literally two minutes to register.
Now, if we could just find a way for insulin scripts to never run out, diabetes supplies to be endlessly replenished when running low and all our other appointments sorted, we’d be halfway to making this condition just a tiny but easier to manage.
Disclosure
I work for Diabetes Australia, but I am not writing about this because I have been asked to. I am doing it because I genuinely think this is a program that goes towards helping those of us living with diabetes and I will always share anything that does that.
But you do need to be aware of who pays my salary each week and consider my bias when I share things by my employer. You have a right to know that, which is why I will always make sure that it’s clear – each and every time I write about anything in which I am involved. Transparency is important.
Diabetogenic 