Diabetogenic

Village people – research call out

June 1, 2018 in Diabetes, Family, Real life, Research | Leave a comment

It takes a village.

How often do we say that about life with diabetes? I know I say it all the time.

It doesn’t matter if you were diagnosed as a child or as an adult, diabetes is rarely a solitary health condition. While those of us whose beta cells actually decided to go AWOL are the ones physically affected by the condition, our loved ones are also part of our diabetes existence.

As someone who is surrounded by a village of loved ones – family, friends, neighbours, colleagues – I can’t ever state enough how important they are in my diabetes wellbeing. I am so grateful for their love and support. I love that they are there for me when it feels like diabetes is kicking my arse. I love how Aaron knows that when things are tough, all I need is him to look at me, nod and say ‘diabetes sucks’, hand me a cup of tea and hold my hand to make me feel better. I love it when our daughter displays her keen advocacy skills by talking about diabetes in the same way I do, using the language I use. And I love it when my loved ones celebrate the wins and successes and diaversaries alongside me.

The Australian Centre for Behavioural research in Diabetes (ACBRD), in collaboration with the NDSS, is currently looking for family members and friends of people with either type 1 or type 2 diabetes to participate in some research to help them develop an information resource about how to support people living with diabetes. The resource will also focus on how loved ones can take care of themselves too.

To be eligible to participate you must meet the following criteria:

You are 18 years or older
You are either a family member or close friend of someone with diabetes (e.g. parent, sibling, spouse, best friend)
You live in Australia and are able to partake in a telephone interview, or meet with us in person in either North Melbourne or Geelong
You are able to read, write and speak English
You are available in early-mid June 2018

You will be thanked for your time and for providing your experiences with a $50 gift voucher.

If you are the loved one of someone with diabetes, thank you! And please consider taking part in the research for the development of this resource by contacting Caitlynn Ashton by email or phone (03) 9244 6668. (Please note, Caitlynn’s days of work are Monday-Wednesday.)

Celebrating my 20th diaversary with some of my village people.

Let’s really talk about sex (and women with diabetes)

May 31, 2018 in Diabetes, Health, Real life | 12 comments

A couple of years ago, I clumsily wrote a post about how there is simply not enough information available about women, diabetes and sex. That post remains one of the most read posts on this blog. Within half an hour of pressing the publish button, over two dozen women I don’t know reached out to me to say it was the first time they had ever read anything about the issue, and that their concerns and questions have never been addressed…mostly because they didn’t know how to ask them.

A week or so ago, the topic came up again thanks to a new survey that is being conducted out of the UK, headed up by health psychologist Kath Barnard. The introduction to the survey highlights that sexual health issues for women with diabetes are a neglected are of study, acknowledging they have an impact on wellbeing, self-image and relationships.

Here is what I wish I was told about sex and diabetes when I was diagnosed – or at least could easily find information about somewhere.

Diabetes can affect how you feel about sex. (Seriously, being diagnosed as a 24 year old, this should have been a headline.)
And it can affect sexual function in women. I really wish I had known this, because it was not mentioned when I was diagnosed (or for a long time after). Sex was different after diabetes, but because no one told me that it could be, or what might happen, I thought that this was just me. And because I thought it was just me, I didn’t speak to anyone about it. I guess because I was embarrassed and ashamed.
Yes, sex is exercise and can result in hypos. But it’s not just lows that affect sex. (This was literally all I was told at diagnosis about the impact of diabetes on sex: ‘You might have a hypo after or during sex, so eat a sandwich beforehand.’ And all I could think about in that moment was trying to work out how to incorporate a sandwich in foreplay. (Please do not send suggestions.)
High glucose levels are not good for libido. Sitting with glucose levels in the high teens and twenties does not put me ‘in the mood.’ It makes me feel tired, grumpy, frustrated and stressed. All of these feelings are conducive to diminishing sex drive.
And rollercoaster glucose levels don’t help either.
While I was warned that sex can cause hypos, I wasn’t equipped with how to deal with that. ‘Sorry, honey – I need…well, I need some honey, because I think I’m about to pass out,’ is a mood killer. For everyone involved. I learnt that very early on.
I wish I had been told how to speak about my concerns about sex – with HCPs and especially with Aaron. I felt like my body was failing at everything and that made me feel decidedly unsexy. But by not having the words or ideas of how to speak about it, I simply didn’t. (And again, I wouldn’t have had any solutions even if I did speak about it, so what would have been the point.)
The body image issues I had been living with for some time became amplified once I had diabetes. Suddenly not only could I see all these faults with my body, but now it was also broken from the inside. I felt unattractive, I didn’t want to have my body on show because to me it felt inadequate. It would have been good to have someone suggest I speak to a psychologist and work through this sort of shit!
‘Here are some ideas that might work if lubrication becomes an issue, because it might.’ That would have been a mighty useful comment to have received, instead of feeling like my body was slowly, but surely, shutting down all functions that I had, until that point, taken for granted.
Here’s an idea: often, at diabetes events, we receive bags chock full of goodies: Foot cream, alcohol swabs, glucose tabs, cardboard-tasting muesli bars, recipe books. Throw a tube of lube in there too, event organisers! At least this will get people thinking, realising that if this is an issue for them, they’re not the only ones, and probably start some conversation.
I wish HCPs understood that this may be a really difficult and awkward conversation for some people, and many women with diabetes won’t feel comfortable raising the issue. So please take the lead here and ask questions – even: ‘Have you noticed any difference in how you feel about sex?’ Do it gently…
Desire and arousal are not the same thing. Wanting to have sex, but knowing that it may be painful, difficult or just plain not the same as before, plays with your mind. I wish that had been explained to me, because arousal issues actually meant desire was affected.

I think that had I been better informed about all of these factors, or at least told that sex was something that diabetes could (or would most likely) affect, I would have been better equipped. It took me a while to muddle through it all myself.

I know that talking about sex – in and out of a diabetes context – is not always easy. But just because something is difficult doesn’t mean that it should be swept under the carpet and ignored.

Unsurprisingly, it was speaking with other women and learning that they had the same issues, questions and concerns that led me to seeking clinical and psychological help to work through everything. I feel like I got there in the end, but it took a lot longer that it needed to. Because I honestly thought that I was the only one dealing with it all. However – as is so often the case with diabetes – our concerns and stories are already someone else’s, and there are answers to be found if we know where to go to looking. I just wish that instead of having to search, they had been given to me at the beginning.

Please consider filling in the Female Sexual Health and Diabetes survey here. It only takes about ten minutes.

Consent

May 30, 2018 in Awareness, Devices, Diabetes, technology | 4 comments

I’m a little late to the whole Black Mirror thing. Aaron has watched through all four series and has repeatedly told me that I should get onto it, but I’ve just not been in the right mood to start and work through a new sci-fi series. (For anyone equally behind the times, Black Mirror is a Netflix series.)

However, there was one episode in particular that Aaron, and a couple of other people, suggested I watch. It is called Arkangel. The Netflix description for this episode is:

Worried about her daughter’s safety, Marie signs up for a cutting-edge device that will monitor the girl’s whereabouts – and much more.

The device (called Arkangel), an implantable chip, allows Marie to see her three year old daughter, Sara’s, location and vitals – blood pressure, heart rate, cortisol levels etc. – in real time. But more than that, the chip allows Marie to actually see exactly what Sara is seeing – not to watch her child as if there were CCTV cameras everywhere, but to see the world precisely as her daughter is seeing the world. There are parental controls that allow Marie to change what her daughter sees, effectively, blocking out (by pixilating) anything not PG-rated. The device was completely controlled via an iPad-type device and would alert if Sara was in any distress.

Arkangel was sold as a way for parents to know that their children were safe at all times. And what could possibly be wrong with that? It’s what all parents want. Right?

About ten minutes into the episode, I looked over at Aaron. ‘This is making me really uncomfortable,’ I said to him. Watching Marie getting on with her life, with the Arkangel tablet device next to her for easy access to what her daughter is experiencing at that moment, made me feel very uneasy. Every single thing her little daughter saw was replicated on the tablet.

As the episode progressed, Sara got older and Marie continued to monitor her daughter’s every move. But by the time she gets to about ten years old, Sara starts to question her mother’s use of Arkangel. Sara has come to realise that the parental controls mean she had never seen, and therefore could not understand – a lot of things her friends were talking about. Marie decided it was time to put Arkangel away. The tablet was switched off and stored in the attic, and Marie and Sara got on with their lives.

Until Sara hit teenage-hood…!

One night, after discovering Sara lied about her whereabouts, Marie reactivated the Arkangel tablet to locate her daughter, and see what Sara was up to.

My neighbour, Jo, was one of the people who urged me to watch this episode. She knew that I would see what she had seen when she watched the episode. And I did, immediately recognising the parallels between sharing of CGM data and Arkangel. And the issue of consent, or rather, the absence of it.

At the Roche Diabetes MeetUp at ATTD this year, I joined in a very robust conversation about the whole idea of sharing CGM data. There were adults with diabetes and parents of children with diabetes in the discussion, each with their own idea about the value of the technology.

A number of adults were appalled at the idea of sharing data, claiming it was simply a way for others to spy on them.

Personally, I am very apprehensive about sharing my data. Of course, this is a highly personal way to feel about the technology and there are other adults who absolutely love the idea that there is someone else keeping an eye on what’s going on with their glucose levels, and able to make sure they are okay if there is a problem. It makes them feel safer and more confident – and if that’s what people get from the technology, it’s only a good thing. But I am not sure just how comfortable I am at having someone see every high or low.

But we are adults – fully formed and grown and making decisions about ourselves and our diabetes, forourselves and our diabetes.

I also completely understand that as a tool, CGM sharing is one of, if not THE, most valuable and essential tool for parents to feel confident that their children with diabetes are safe at school, or other places, when they cannot be with their child. I know that CGMs with share capabilities have, in many cases, completely changed family dynamics for the better.

So when I question the technology and what it can do, I’m not in any way searching for answers about the value of the tech – that is indisputable in my mind. But I am questioning the issue of consent.

While it may make perfect sense for an infant in day care, or a primary school-aged child to have data share activated, what happens when the child starts high school. Or begins university? Or moves out of home? At what age does the idea of having the ability to remotely monitor someone’s CGM data become the decision of the person whose data it is?

I don’t think we have had these discussions, or thought through the long-term implications of CGM data sharing. And I worry that we still seem to not be having those conversations.

When the episode of Black Mirror ended, I felt unsettled. I actually noticed that my heart rate was elevated. I was rattled and had trouble sleeping that night, and I couldn’t help but see Arkangel as a cautionary tale.

Where are the conversations about consent? Where is the line in the sand when it comes to who makes the decision about data sharing? Obviously it will be different for every family, but where are the guidelines or conversation starters to equip people to make those decisions? If this is not being discussed at the time that children and adolescents are commencing CGM, why not?

These are not easy conversations to have – and, quite frankly, as an adult with diabetes, one diagnosed as an adult and not the parent of a child with diabetes, I am not sure that I am the right person to be even talking about it. Some might (and undoubtedly will) say that I should pull my head back in because I don’t understand the situation at all, and simply stop talk about it.

But someone does need to. And I think that it needs to start happening right now.

Linking up

May 28, 2018 in Uncategorized | 1 comment

Another week, another opportunity to hang out with some Aussie diabetes bloggers and advocates. I’m back in Sydney for today and tomorrow, facilitating Abbott’s third Australian Diabetes Exchange meeting. You can follow along on Twitter, Facebook and Insta at #D2Sydney2018. (And you can read about previous DX events here and here.)

The timing of the event coincides with the launch of Abbott’s Freestyle LibreLink app, which allows Freestyle Libre users to use their mobile phone (Android or iPhone) as the scanner for their Libre sensor. That’s right, point phone at Libre sensor, swipe, glucose level appears on phone screen. This means no need to carry the reader with you.

Freestyle LibreLink launches in Australia on 5 June, so it won’t be available until then, but we’ve been able to have a little play today to see how it works. The app provides pretty much the same information as the reader, so as well as current glucose readings and the previous eight hours of data, there are screens that show averages, time in range, and predictive HbA1c. It’s easy to use, looks clean, and for anyone already familiar with the Libre reader, the transition to phone-as-scanner should be smooth.

I am all about making diabetes easier. I frequently say that I lament the days when I could run out the door with my phone, keys and wallet and nothing more. Diabetes doesn’t really allow us to do that, thanks to all the paraphernalia we need to carry with is. While we still will need to carry lots of kit, by doubling up our mobile phone as a sensor scanner, we are able to take one thing less with us in our (oversized) diabetes kit bag.

Now, I have been doing this for some time. I’ve been using Dexcom G5 since it was launched in Australia, and Loop since August last year, so my phone is as much a medical device as it is a Twitter machine. But I was paranoid at first that my phone battery would die and I would be unable to check my glucose levels. It’s happened maybe twice.

Some things to think about if you are new to the phone-as-receiver-of-glucose-data. Charge your battery to capacity before you leave the house. Have a charger with you at all times. (I have one in my car, one at work and one in my bag). Consider carrying a battery pack – and don’t forget you need to charge that too if you want it to be of any use. There are cases which double as a back-up battery. Consider investing in one of them. And if you are worried that you are going to be caught short, chuck the reader in your bag until you get the hang of having your phone charged at all times!

Some people may think this is a gimmick, but I firmly believe that is not the case. Having our current non-diabetes technologies become part of our diabetes gear makes sense. We want things to talk to each other, and this is exactly what this is doing. We’re seeing it more and more.

Reducing burden, making diabetes less a pain in the arse and finding ways to make things easier. I’m all for that!

Want more information about Freestyle LibreLink? Keep an eye out on the Abbott Diabetes Care website here.

Disclosure

Abbott Diabetes Care have paid for my travel, food and board while in Sydney. They provided me with one Freestyle Libre sensor and advanced access to the Freestyle LibreLink app. (However, I will be deleting it tomorrow at the end of the DX2Sydney 2018 event as it is not available for use until it is launched on 5 June 2018.)

As is always the case, I have not been paid, or asked, to write about product or this event. I’m just a caring, (over) sharing type of person.

Added choice

May 25, 2018 in Devices, Diabetes, Pumps, technology | 2 comments

Last Friday, as I was getting ready to fly home from Copenhagen, I realised that the beautiful city was being inundated with some of my favourite European diabetes bloggers and advocates.

I was lucky enough to manage to meet up with the truly wonderful Tine who I have come to know and love through my involvement in the Roche Blogger program. When it comes to dynamic, sassy, smart and downright wonderful advocates, Tine is at the top of the list. We caught up briefly, talked about diabetes and language, and drank iced coffees and I am so glad that I got to see her gorgeous face.

Tine. She is so wonderful!

Unfortunately the rest of us were ships in the night and probably standing right near each other on opposite sides of the departure/arrival gates divide at Copenhagen airport. Brutal!

My friends were in Copenhagen to meet with the team from YpsoMed, which they do a couple of times a year, to talk about the YpsoPump and other YpsoMed products, advances in diabetes technologies and come together for some peer support. Some of them are using the YpsoPump, but certainly not all of them.

I’ve had a play with the YpsoPump a few times in recent years. My good mate Finn, who blogs here, (in German; Google Tanslate is your friend) stayed with us a couple of years ago when he visited Australia, and I tried bribing him with Tim Tams in exchange for his YpsoPump. Alas, my tactics didn’t work. (Apparently he needs it to infuse insulin into his body or something.)

And each year at EASD, I would annoy the team on the YpsoMed stand by demanding to know when they were bringing their pump to Australia. (This is standard line of questioning for me at international conferences when I see technology I like the look of and thing we should have access to. I am probably known as the annoying woman from Australia, a badge I am willing to wear and a cross I am willing to bear.)

Yesterday, the YpsoPump was launched in Australia. I’d like to think it was my pestering, but the reality is that it is a smart move by a company that has been around the diabetes world for some time now and saw a market that is truly crying out for some choice.

Lucky us!

So, here are a couple of things of note about the YpsoPump

Undeniably, the first thing that is abundantly clear is the size of the pump. It is teeny-tiny compared with other offerings. The Medtronic 640G, in a side by side comparison, looks like a monster. (This was one of my criticisms when I trailed that 640G a couple of years ago. It felt bulky, clumsy and huge!) The YpsoPump is streamlined and sleek, and sits comfortably down my bra. (First thing I did with it. I know; all class.)
The touchscreen and icons are a departure from the buttons we have come to expect on insulin pumps. When the pump is ‘sleeping’ it is completely black and blank. This adds to the sleek look of the device.

(Having a little play at EASD last year.)

It is pretty easy and intuitive to use. We got to have a play and set up the pump yesterday and it was simple and logical. Loading and priming the glass cartridge was quick. The cartridge holds 1.6ml of insulin – this is not a pump for people on huge daily doses of insulin.
The pump uses and is integrated with a smart phone app (search MyLife from the App Store to download for free). At this stage it is uni-directional, so the pump cannot be driven from your phone. (i.e. The pump speaks to the phone/app; the phone/app doesn’t speak to the pump.) However, this is something that will, in the future, happen. (‘In the future’ apparently means a couple of years.) For those of us Looping, we shake our heads, because we are currently doing this and it makes no sense that regulatory processes are holding up something that is already available and perfectly safe. It also negates the whole thing about discretion when it comes to the pump. If you still need to pull it out from under your clothes, it doesn’t matter how small the thing is – you still need to pull it out from under your clothes!
Really pleasingly, customer service is all being run out of Australia which means that whoever you speak with has a really good understanding of the Aussie health system. This is especially useful for ironing out any potential glitches with getting approval through PHI.
Consumables are already on the NDSS. Want this pump? It’s ready to go. Talk to your HCP!

Two other things I asked about were a little broader than simply the use, design and practicalities of the pump.

Firstly, I wanted to know what was going to be done to protect us from coming to love this device, only to see it disappear from the market in four or six or eight years’ time. I have lived through the loss of the beloved Cosmo pump (I LOVED that pump!) and now Animas. While for some this can be seen as just an evolving market, I think it is much more than that. We are intimately connected with these devices. We see pumps come and go from the market. We invest in them, we become attached to them (literally and figuratively). To have them disappear from the market is heartbreaking for some people. I was grateful that Eberhard from YposMed acknowledged our disappointment. He told us that the company has been around for a long time and is very invested in continuing to provide new, innovative and cutting edge technologies to the diabetes market. I hope he is right, because I can see people falling in love with this pump very easily.

And secondly, I wanted to know what sort of engagement YpsoMed were doing to ensure that what they are delivering (they have a lot of things in the pipeline, including a patch pump due for release in 2012/22) really aligned with what people with diabetes want and need. Their engagement with the community is strong and they seem committed to it. The European blogger group has been meeting regularly and provide feedback on design and development. The launch of the product into Australia was with consumers (the HCP launch is today). There is definitely a desire to work and link closely with people in the community and that should be commended.

Just some of the advocates and bloggers at the YpsoPump launch yesterday.

With the YpsoPump ready to go in Australia, we are seeing increased choice in the pump market. No longer should we feel pushed into a pump that we don’t really want because that’s all there is, or all that is supported. This is only a good thing for people with diabetes.

You can find out more about the YpsoPump by going here.

DISCLOSURES

You bet! YpsoMed flew me to Sydney, put me up in a hotel, and fed and watered me. They did not pay me for my time, nor for my words. They did not pay me to ask annoying questions – or to not ask annoying questions for that matter. You can and should consider this when reading what I have written today.

Talking about lows

May 23, 2018 in Awareness, Diabetes, Hypo, Language, Lows, Real life, Research, Travel | 5 comments

I’m back from a very busy week in London and Copenhagen. I arrived back in the door at home exactly two minutes after Harry and Meghan got hitched, so I missed the whole happy occasion. If only we had some sort of magical way to see photos and videos and relive beautiful experiences like that. Oh well, never mind.

The main reason for my trip was for the kick-off meeting for Hypo-RESOLVE, a new four-year project focusing on better understanding hypoglycaemia. I’m there as part of the Patient Advisory Committee (PAC), which is made up of advocates from across Europe. Obviously, it is now legislated that an Australian also be included in any European diabetes advocate activities. I believe it’s called the Eurovision Law.

The project is made up of eight work packages, each led and staffed by leading European diabetes researchers and clinicians, and after seeing just who was going to be in the room, I suddenly was struck down by the worst case of Imposter Syndrome I have ever experienced. This didn’t get any better when I was told that the presentation I had been asked to give was not only for the PAC. No – it would be in front of all eighty project participants. I looked at the list of who I would be standing up and speaking to, and cursed the meme- and photo-filled presentation I had prepared, wondering if I could pretend to understand statistics and graphs, and add some to my slide deck to at least try to sound smart.

I decided to stick with what I knew (memes, cartoons, photos of weird hypo tales), and left the slide deck as it was, hoping against all hope that I would manage to keep myself nice, and sound as though I understood what I was speaking about.

I was asked to give a talk about the real life experiences of hypoglycaemia. Fortunately I have kept a pretty good record of the literal lows of my diabetes (which, incidentally, was the title of my talk). Thanks to the search function on Diabetogenic, I was able to easily pull together a number of stories about the lows I’ve had. This proved to be more useful than I realised because these days, lows are few and far between. Since I started Looping, I’ve not had the sort of low that has made me want to write about it and try to analyse what it all means in my diabetes life. In fact, I’ve not had any lows that have required anything more than a mouthful of juice or a couple of fruit pastilles to treat.

Reading back through my blog posts was actually really quite confronting, and I found myself getting emotional as I read details of terribly scary lows and how they had impacted on me – in the moment, and in the days following. As I read, I remembered the anxieties I felt about something happening while low that would seriously affect my family.

I’ve not asked them, but I wonder if the fact that I have so few hypos these days makes Aaron and the kidlet feel calmer about my diabetes. They still see me sucking on a juice box every now and then, but it is done without urgency, and without the look in my eyes that betrays the calm I used to try (and fail) to convey.

In my talk, I really tried to express just how significant hypos have been in my life with diabetes. I tried to explain that even once a low is ‘fixed’ there are often residual effects – effects far beyond just trying to work out what my glucose levels would do after playing the how-low-can-you-go-hypo-limbo.

I spoke about how the emotional fallout after a nasty hypo can be crippling, leading me to second guess every diabetes decision I made, wondering what I had done to cause the low in the first place – because that is the ongoing narrative of diabetes….we did something wrong to cause the hypo (or the complication, or the high, or the technology failure). And I really tried to explain how sometimes there are no answers, no matter how hard we look, or how desperate we are to find something to blame.

Of course I spoke about the language of lows and how the words we use impact on the way that hypos are considered. There is no doubt that ‘severe’ hypos are serious and need urgent attention and investigation, but so-called ‘mild’ hypos can be just as burdensome.

Obviously, everyone’s hypo stories will be different and I took great pains to clarify that I was speaking of my own experiences only. In the past, hypos have terrified, paralysed and alarmed me. I was afraid to sleep, I was afraid of lows when awake. I was scared I would have a particularly nasty low around my daughter and scare her. I am fortunate that my deliberate non-compliance has resulted in almost no lows, and feeling safer that I have ever felt before. My fear of hypoglycaemia is manageable these days, yet I don’t take for granted that it will always be like this. I still carry hypo food around with me – there is no point tempting the hypo gods by not being prepared!

I’ll be writing more about Hypo-RESOLVE in coming days. I’m so pleased to be involved in such an exciting and interesting project; I’m honoured to have been selected for the PAC. I’m beyond thrilled that PWD are included in the DNA of the project – right from the kick-off, not brought in at the last minute for comment when all the decisions have been made. And mostly, I am grateful that hypoglycaemia is being given the attention it deserves. I honesty hope that one day no one ever needs to feel the panic and fear that so many of us have come to know.

Kicking off the kick-off meeting (Click for source)

You can read all about Hypo-RESOLVE in the Innovative Medicines Initiative media release from last week announcing the launch of the project. My flights and accommodation to attend the Hypo-RESOLVE kick off meetings were funded from within the project. PAC members are volunteers on this project.

These three women

May 14, 2018 in Diabetes, DOC, Peer support, Real life, Social media | Leave a comment

I’m in London for a couple of days of meetings before flying to Copenhagen….for another couple of days of more meetings. But I was smart this time, managing to set aside a whole day before the meetings start to do this:

These three women – these wonderful women – are part of the lifeline I have to help me manage diabetes. It may have been faulty pancreaes that brought us together, but what ties us together is support, friendship and love.

Thank you Annie, Georgie and Izzy for coming to meet me in my jet-lagged state in London. Thank you for building me up, and filling my jar. I couldn’t do this diabetes shit without you all.

It all comes down to choice

May 11, 2018 in Diabetes, Food, Health, Real life, Social media, Wellbeing | 1 comment

I woke yesterday morning to a shit storm on Twitter. I had dozens and dozens of notifications where I had either been retweeted, mentioned or @-ed. (And yes, sorry, I did just turn the @ symbol into a verb). I was hoping that someone was sharing news with me that in the eight hours I’d been asleep, diabetes had been cured, JK Rowling had released a new Harry Potter book, or Nutella would be sponsoring me to…well, eat Nutella.

Alas…it was none of these. No; it was not.

I slipped down the rabbit hole of people replying to a tweet where I’d shared an awesome blog post by my mate and all ‘round wonderful human, Georgie Peters. Georgie was commenting on the recent study which has been widely shared (and written up in the NY Times) about type 1 diabetes and LC diets. (If you’ve not read the NY Times article, do! The study is really interesting and as someone who predominantly follows LC it all makes perfect sense to me…and makes my CGM trace devoid of roller coasters lines.)

Georgie’s piece was not demonising LC. In fact, quite the opposite. She was suggesting that it is absolutely a valid way of eating for some people, just as eating moderate to high carbs might be.

Distilled into one word, Georgie’s post was about CHOICE.

In more than one word, Georgie was warning that diets that are inherently restrictive in nature could lead to an increased risk in eating disorders. Georgie was specifically referring to children on LC diets who are not given a choice in the way they are eating, or as she far more eloquently puts it: ‘…the food choices of children and their right to bodily autonomy.’

Choice. It all comes down to choice.

Apparently, that was completely lost on the people challenging what Georgie was saying. One person was somehow trying to say that the idea that a diet restricting carbs was no different to a kosher diet, and does that mean that people following a kosher way of eating have an increased rate of eating disorders? (If you can join the dots to make something that even remotely makes sense, please do so for me, because I have tried and keep coming up with a massive question mark.)

Another doctor claimed that she insists all her surgical patients go on a low carb diet (pre-surgery), and that they have no choice in the matter. Two things: type 1 diabetes isn’t the same as prepping for surgery. And any doctor who even suggestedthere being no choice in anyaspect of my diabetes management would be given the sack very quickly. (I’ve no idea about pre-surgery diets, because that’s not my thing. Diabetes is. Georgie’s post was about diabetes, not about pre-surgery diets. The surgeon’s comments added to my confusion, because: apples and oranges…which are probably banned on her LC diet. And further down the rabbit hole we go.)

The food we eat; the diet we follow, are inherently personal choices. No one has the right to insist that there is only one way of eating. One of the frustrations that some of us who do want to follow a LC diet have is that there are some HCPs who refuse to even acknowledge that it could possibly be a positive and useful diet for people with diabetes, some going so far to say it is harmful.

The other day as many of my friends shared the NY Times article, I saw them plead for others to open their minds. I want that, too! I want people to have the information about how LC might work as a diabetes management strategy and be open to the idea. But more than that, I want people to then choose what works for them.

And when it comes to parenting (and I know that I don’t have a kid with diabetes, but I am a parent), I know this to be true: we all want what is best for our children. The thirteen-year-old in our house doesn’t have complete autonomy over food choices, because I do ninety percent of the shopping for food and cooking. I like it that way, because I get to eat what I want, and don’t have to do any of the cleaning up after I’ve messed up the kitchen! Win, win!

While she doesn’t have a choice in what is served up at the dinner table, she does get to decide what of it she eats. I know she doesn’t have diabetes, so when it comes to thinking about food, she doesn’t have to consider her glucose levels. But there is far more to health than that.

I am doing all I can to inform and educate her on what makes for a healthy, balanced diet. I have to trust that what I am doing is enough to result in her making healthy choices most of the time.

Choice – that’s what Georgie was writing about. Is it really that hard to understand?

In kind of related, but really, just that I want to share something: this nut and seed bread is incredible:

It’s low carb (at least, it is the way I make it, because I swap the oats for coarsely ground hazelnuts) and, quite frankly, is the best thing I have ever eaten. (To make it decidedly not low carb, slather in Nutella…!)

Just like always

May 9, 2018 in Complications, Diabetes, Eyes, Family, Health, Healthcare team, Real life | 3 comments

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

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

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

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

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

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

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

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

Drops in; vision blurring. Waiting…

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

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

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

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

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

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

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

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

Confused

May 8, 2018 in Communication, Devices, Diabetes, Peer support, technology | 2 comments

We have a beautiful tree over the back laneway at our place. Usually at this time of the year, it is in full autumn brilliance. The red and gold leaves catch the gorgeous afternoon sunlight, and where the leaves have already littered to the ground, the branches are bare.

But this year, things have been a little different. Our tree brought out its autumn clothes a much later than usual, but sure enough a couple of weeks ago, we noticed that the leaves were beginning to turn. Every day, I’d look over the fence to see a deeper red, a more golden glow. Sure, we hadn’t needed to turn the heating on inside the house yet, and my really warm knits were still tucked away in the cupboard, but the tree was promising winter and cooler days.

Blossom buds. In May…

Over the weekend, as I sat in the kitchen, the back door open letting in a lovely breeze, I looked up at our tree. And there, on the bare branches, I could see something shooting. I went outside to have a closer look and realised that what I could see was the start of the blossom that comes out in the middle of springtime.

Our poor tree was looking mighty confused. I was confused. This isn’t how things go. The seasons are meant to be somewhat regulated and ordered. I like order. Order makes sense. This didn’t make sense at all to my brain, which likes things to be as they should be!

This wasn’t the only confusion I dealt with this week. Last Friday, I spoke about DIY diabetes technology at a health professional event and there was a lot of confusion.

I only had ten minutes (seriously not long enough to talk about something that is a completely novel concept to most of the audience), so I spoke fast, waved my hands around faster and tried to simplify the whole idea of looping into about 8 slides. ‘Renza will be around afterwards if you have questions,’ the emcee announced to the audience who all looked slightly bamboozled and winded after I finished.

There were questions. Lots of them about how Loop works, what it really is and who can use it.

But the one thing that seems to garner the most confusion is the cost. ‘You didn’t say how much has cost you,’ a few people said to me once the event was finished. Actually, I did. (Admittedly, very quickly, because: 10 minutes!) ‘Well, you need to source a pump that works, so that may be costly. And if the person using it is over 21, they will need to fund CGM themselves. Plus, the Riley Link is about $150 and there is a cost associated with becoming an Apple developer,’ I repeated what I’d said in my talk. (Obviously, I was talking Loop, but there was an OpenAPS user in the room too and I think he may have answered a couple of questions about the cost of his set up.) ‘No, no…what about the actual cost to use the app? How much does that cost?’

I have had this question asked probably more than any other. For some reason, people don’t seem to understand the concept of open source information sharing. No one is making money through this. The clever people who have developed DIY diabetes solutions place the details online for anyone to see and use. For free.

But this seems to be a confusing concept for a number of people.‘Wait. So no one is making in money from this? What about the people who worked it out in the first place? They are. Right?’

‘Nope,’I always reply, wondering how many ways I need to say it (along with wondering why I am so lousy at communicating things and also, if my hands waving around are distracting people).

Inevitably, the next comment is ‘Well, I’m not sure why someone doesn’t try to commercialise it. That would get it through regulations, wouldn’t it?’

At that point, it’s my turn to look confused. Why is it so difficult for people to understand that there are actually people in the world who genuinely want to do something good for others? Or that the WHOLE point of the #WeAreNotWaiting ‘movement’ is the fact that there is no waiting for regulations that are inevitable with commercialisation?

I guess that unless you are part of this community, it could be difficult to understand. But the generosity of those in the community is on show all the time. Whether that be the people doing the grunt work behind the scenes to make the dreams of DIY diabetes a reality, or the people who are then writing the step by step instructions so even fools such as me can follow those instructions, or the incredible community members who are ready to jump in any time to answer SOS calls for help when something doesn’t seem to be working, these people are doing it all for nothing more than the gratitude of those of us who are reaping the rewards of their cleverness and kindness.

The confusion – and disbelief – about this community is confusing to me, because every day I see how incredible it is. I only wish I was smart enough to give back even a fraction of what I have received from those brilliant folks who are there for the rest of us. And I really wish I was able to do a better job explaining what a marvellous bunch of people they are!