Diabetogenic

Sign the T1 International Access Charter

November 3, 2016 in Advocacy, Awareness, Diabetes | 2 comments

I have written (frequently) before about T1 International and I am going to do it again this Diabetes Awareness Month.

Because the team at T1International have a new initiative: they are urging people to sign their Type 1 Diabetes Access Charter which outlines five rights that all people with diabetes should have:

The right to insulin
The right to manage your blood sugar
The right to diabetes education
The right to healthcare
The right to live free from discrimination

None of these things are luxuries. These are basic human rights that should be afforded to every single person diagnosed with diabetes – not just those of us lucky to be born in a country such as Australia. Insulin is not a new-fangled, fancy drug. It has been around for 95 years. When talking about the right to the tools required to manage bloody sugar, we are not talking latest technology such as continuous or flash glucose monitoring or hybrid-closed loop systems that are entering the market. We are talking about basic blood glucose meters and strips.

The reality is that around the world, many people cannot access or afford insulin or diabetes supplies. Education is sporadic at best. People with diabetes are being forced to choose between buying insulin and buying food or other essentials. How do you make the decision between putting food on the table or buying the life-saving drug you – or your loved one – needs to stay alive? It’s a decision that most of us in Australia never have to even contemplate, but it is a reality for many, many people around the world.

I messaged T1 International founder, Elizabeth Rowley, yesterday to let her know I would be writing about the charter today, but I also wanted to comment on a Facebook post she had just shared.

Elizabeth had used the JDRF diabetes stats calculator (as discussed in yesterday’s post) and shared her results. She had a very different take to how many others responded.

She reminded us that she is the one of the lucky ones because in her almost 25 years as a PWD, she has been able to access whatever she has needed to manage her condition.

When I did my diabetes numbers, I looked at the terrifying number of BGL checks I have done over the last 18 years: 34,749 (although Aaron did suggest that during pregnancy alone I would have done that many!). Not once have I ever had to wonder from where I would be getting my next box of strips. Not once have I thought about rationing strips or pump consumables for fear that I could not afford more when I ran out. Not once have I had to consider taking less insulin that I need.

The scary thing about the numbers generated by the JDRF calculator is not the huge numbers many of us are seeing tallied up. In fact, it is actually the small numbers in those people with diabetes who can’t access what they need to manage their diabetes.

T1 International is doing some amazing things – just as they have done since they started a yea few years ago. Please check out their website, click below to sign the charter and get your friends and family to sign too, and if you can, make a donation to this really important cause.

Interweb Jumble #19 – the November edit

November 2, 2016 in Awareness, Diabetes, DOC, Health, Real life, World Diabetes Day | 2 comments

November is a big month in diabetes. For those of us living in Australia, the main event is World Diabetes Day on 14 November, but I’m certainly happy to be swept up in the USA’s Diabetes Awareness Month.

For the next four weeks, there will be a lot of diabetes awareness about and it’s a great opportunity to speak about real life with diabetes, dispel some myths and set the record straight when someone tells you to increase your cinnamon consumption to cure your diabetes.

Get your blue on…

Blue is the colour of diabetes and, this month, it’s my colour of choice! (Including this potentially misguided nail colour. My manicurist actually said ‘Are you sure?’ when I picked it our yesterday.)

I’m stuck with these nails for a couple of weeks now, but plan to accessorise with a lot more blue (including the blue mascara and eye liner I bring out just for November!)

And a throwback to 2011 (seriously!) when Cherise got a few DOC folk together to make this video. Wear blue!

Diabetes is not about numbers. Until it is.

JDRF has this nifty calculator on their website that (somewhat scarily) adds up the numbers to show just how many diabetes tasks we’ve undertaken in our diabetes lives. Here’s mine (as of yesterday).

I am the first to say that diabetes is not all about numbers, but I do love this because it shows the magnitude of this condition and its relentlessness. You can get yours here.

(And JDRF UK has their own here.)

What is diabetes awareness month all about anyway?

In fact, what are ALL awareness months about? This beautiful and throughtful post from Jessica Apple from A Sweet Life (online magazine) is definitely worth a read.

And this take from a Diabetes Dad…

And Tom Karla (AKA Diabetes Dad) has this to say about just who this whole month is for. (Spoiler: it’s not for those of us already living with diabetes!) As I said on Twitter yesterday – I spend a week every July (during National Diabetes Week in Australia) trying to explain this. Will be forwarding Tom’s post far and wide from now on!

7 day online peer support…

Did you know that there is a free online Peer Diabetes Mentoring Summit running right now (until 7 November). Diabetes Dominator, Daniele Hargenrader, has coordinated this fab event and you can claim your free ticket here. So many terrific sessions with great speakers to follow!

Photo challenge

There’s a fun photo challenge for the month from Project Blue November. Using the prompts they’ve provided, post a photo each day to your SoMe feeds to share your life with diabetes, tagging the pic with #ProjectBlueNovember. Here are the prompts:

What I’d tell myself at diagnosis..

Lovely piece from the team at Diabetes Forecast where some PWD share the wisdom they would give their newly diagnosed self. Read it here.

And here’s the letter I wrote to my newly diagnosed self a few years ago. It still holds pretty true!

Circled

The International Diabetes Federation’s WDD selfie app (download for free at the app store) allows you to add a blue circle – the international symbol for diabetes – to any photo you’d like.

Big Blue Test

And of course, November means that it is time once again for the Big Blue Test, brought to us by Diabetes Hands Foundation. Over 125,000 BBTs have been logged since the program started in 2010. Easy peasy lemon squeezy instructions are:

Get logging for good karma. There’s even an app you can use to make it super easy. (And yes – I’ll be logging before and after I take the pups for a walk!)

Keep in perspective.

It’s really easy to get overwhelmed by everything diabetes that’s going on this month. If your SoMe feeds are anything like mine, they will be overtaken by diabetes and there really does seem to be no escape.

Which is why it’s important to remember that we are about so much more than diabetes and find time in the month to do things that remind us of that. We have a couple of birthdays to plan and an upcoming trip to New York to think about – all things that will hopefully keep the whole month in perspective. Plus there is always baking…maybe some cookies…

Snapshot in time

October 28, 2016 in Diabetes, Real life | 1 comment

Our kidlet is starting secondary (high) school next year. Her parents are totally in denial about this – we keep looking at photos of her from five or six years ago, pretending she is only in her first years of primary school. This works perfectly until we actually look at her today – tall and lanky and tweenager-y – and realise that denial can only take us so far!

The other night, we attended an orientation evening at her new school. As we were rushing about getting ourselves organised and out the door to get there on time, I was mainlining water and continuing to rage bolus my way through awfully high glucose levels. The throat infection I’ve had for a couple of weeks seemed worse and was absolutely kicking my arse. Apart from a milky coffee in the morning, I’d had no carbs all day, and yet each time I looked at my iPhone for my CGM number I was furious.

At one point, I blinked away tears as I saw another number in the high teens and a stubborn, perfectly-straight CGM trace that was stuck in the yellow zone of the graph.

My mantra of ‘it’s just a number’ wasn’t cutting it. The razor-blades in my throat were agonising and my legs and arms were achy – a combination of a low-grade fever and high-grade molasses pulsing through my veins. I threw back a couple of Nurofen, chugged a large glass of water and we piled out the door and into the car.

We got to the school and the kidlet found one of her friends and we all settled in the beautiful school library, waiting to hear about the school’s transition program and what our kids could expect as Year 7 students next year.

The move to this new environment is made as smooth as possible for the students, however there was a lot of acknowledgement from the Principal and the year level coordinator that it would be different and challenging time, as well as a chance for some terrific opportunities.

The Principal said some really soothing and encouraging words – for the benefit of both the new students and their equally (perhaps more?) anxious parents. It was lovely to hear about the supportive and inclusive environment on which the school prides itself, and the initiatives and activities they undertake to help the students become part of the school community.

But the words that struck me most and made me think that we had made a really good decision about this particular school came when he was speaking about exams, tests and assessments.

He acknowledged that getting results for assessments can be a little nerve-wracking at times and that it is perfectly normal to feel some level of anxiety. And then he said ‘But a result is just a snapshot in time. It does not determine where you are going.’

I looked over at our girl then and saw her listening intently. She has heard us say similar things before in relation to school tests and she has heard me say it a lot of times in relation to diabetes numbers.

As the Principal continued talked about the school, I stole a look at my phone for my CGM and saw the number 19.6 looking at me. I recognised the anxiety I had been feeling earlier was two-fold: anger at being high and the lousy feeling that comes with it. But also the fear of high numbers as a long term problem. Subconsciously, the inextricable link between high numbers and complications lurks, littering my mind with fear.

It doesn’t matter how much I know about complications and improvements in management, that fear is always there. I know about how much better the outcomes related to complications are these days for people with diabetes when compared with ten, twenty, forty, fifty years ago – I still am terrified. And never more so than when I am high.

I took a deep breath and returned my phone to my handbag. In my head I repeated the words the Principal had just said a few moments earlier and felt myself breathing easier. ‘It’s just a snapshot in time. It does not determine where I am going.’ I said it again. And again. And again. Until I almost started to believe it. Almost.

Unpleasant

Rituals

October 26, 2016 in Family, Real life, Vlog | Leave a comment

Trying to make sense of the weird link between visiting old family homes, coffee, and searching for security and safety in diabetes. Sometimes, my thought process is ridiculous!

Lingo jingo

October 25, 2016 in Communication, Diabetes, Language | Leave a comment

It’s Drop the Jargon Day. Here’s one I prepared earlier about this very topic.

So today, I am taking extra care about the words I use and the things I say and write when talking diabetes.

I know I am guilty of being very lingo-istic at times. I read through this blog and see the jargon sprinkled through posts, abbreviations and slang terms littered everywhere. (Huge thanks to someone who commented on one of my posts last week about how I need to not use anagrams so much!)

I catch myself in meetings using shorthand that makes sense to me, and correct myself by explaining terms may be like a second language to those of us required to speak it fluently, but a foreign language to those who don’t.

So today, I am going to use pictures to illustrate this issue. Because a picture tells a thousand words. And a cartoonist is far more amusing that I could ever hope to be! (Click on images for source.)

Take the pledge to Drop the Jargon here.

plainenglish

Oi!

October 20, 2016 in Devices, Diabetes, Real life, technology | 3 comments

‘Oi!!!!’

‘Hey!! Hey!! Oi!!’

I have a particular look that I reserve for men who yell at me from passing cars. Admittedly, this look is employed far less frequently than when I was a younger lass, but occasionally, it still does need to be used.

And today, the thunderous look of complete and utter disdain was on my face, and the choice words I was going to use to accompany it were forming on my lips as I turned to the person who was shouting at me from their car which was actually stopped at a set of lights as I crossed the road in front of it.

It took me a moment to realise what was going on, but there was a man, half leaning out the window of the passenger side of the car, flailing his arms around and, once he had my attention, yelling ‘Look!!! Look!!!’

I looked.

And there, on his arm, he was sporting a CGM. Just like me – mine circled by a dark blue RockaDex patch; his with a bright green one.

I jumped up and down (by this time I had safely crossed the road) and yelled back. ‘Oh my god!!!! Hey!!! Hey!!! We are totally best friends now!!!’ I was waving my arms around as well, absolutely not caring how ridiculous I looked.

The lights changed and the car took off. He gave me a last smile and yelled good bye. And I waved at the car, standing there on the side of the road, laughing out loud.

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6,761

October 17, 2016 in Diabetes, Family | Leave a comment

Today is day 6,761 of living with type 1 diabetes. I don’t know why I did the calculations (by ‘did the calculations’ I mean, used timeanddate.com and put in the dates. I didn’t do it myself in my head; that would be weird and impressive), but I did and now I know. My counter is still weighted in favour of days without diabetes, but the difference is slowly but surely eroding.

In the last ten days, I’ve visited houses from my childhood. By some weird coincidence, the house I grew up and lived in until I moved out at 21, and the house my dad grew up in and I spent countless Sunday afternoons with my extended family are both up for sale. I walked through the houses and memories flew around me, launching me back years.

Each day, I drive past the warehouse Aaron and I moved into as students and where we lived for three years, celebrating our independence with a constant flow of friends and dinner parties. Right now, it’s literally a façade and nothing more as it has fallen victim city-fringe developers. No doubt, the eight apartments that were there will be turned into a 15-storey monstrosity with nothing more than the heritage-listed façade to remind us what was once there.

These places are not about diabetes because for all or most of my time there, I did not have diabetes. The 6,761 day counter started after we moved out of our warehouse; I lived in my childhood home for only ten months with diabetes, (when diagnosed, I had moved back home, saving money to buy a house before we got married), and my grandparents’ house also only saw a few years of me living with diabetes. Their day count is heavily balanced in favour of days without diabetes.

And so, these homes are not houses of diabetes. Our apartment never saw a rogue BGL strip on the floor, insulin in the fridge, or a cupboard full of diabetes supplies. There were not huge jars of jellybeans scattered around the house, or empty juice boxes on the bedside table.

The two homes we have owned accommodated diabetes from day one. When we moved into our ‘new’ place three years ago, diabetes moved in too and was given its own space. Just as it has found a pocket of space at my parents’ house now where I open the fridge and see the exact juice box that I use to treat a low in bulk supply (that’s not because I have a billion lows; my parents have always shopped for the apocalypse!).

It settled into my in-laws’ house in the country. We’d arrive at the farm in need of a cup of tea after a long drive and I’d open the fridge for milk to find insulin staring at me. And I’d sigh, slightly startled, as I checked to make sure it was still in date, replacing it with fresh vials from my bag if not.

For 6,761 days, diabetes has moved in with me wherever I live, taking up cupboard space that, let’s be honest, could be far better put to use by housing cashmere sweaters or striped t-shirts. It’s invaded the butter compartment of the fridge which I would prefer to be overflowing with salted Danish butter. It’s littered the floor with BGL strips, the benches with spent pump lines and the rubbish bins with the waste of diabetes consumables.

I wandered around the houses of my childhood and instead of remembering diabetes, I remembered games, and play-dates and hiding places and loud laughter around the table – and stomping, moody teenage years. It’s getting harder and harder to remember the days before diabetes, but as I stood in my old bedroom, I saw the days before the last 6,761, remembering them clearly. And at the same time, not remembering them at all.

Ground swell

October 13, 2016 in Awareness, Communication, Complications, Devices, Diabetes, Engagement, Healthcare team, Real life, technology | 4 comments

Today, I just want to follow up a little about one of the points I wrote about yesterday in my post about the event I attended on Tuesday evening about diabetes-related foot complications, specifically this point made my A/Prof Ramon Varcoe:

He explored how we make people with diabetes know this technique for saving limbs is available, and said that it is really, really important to inform PWD about it so that they can ASK for it and not just accept a diagnosis of requiring an amputation. He said that this was the group that could really drive change here, by demanding that they have the best treatment possible.

This had me thinking long and hard. I agree with A/Prof Varcoe here, but that is not really a surprise. I am so much about consumer-led healthcare, that I dream about it (sad, but true).

Mostly, I thought about it in context of my own diabetes care and how it has happened that I am such a DTech nerd. I decided after about two years of living with diabetes that I wanted to use an insulin pump. I really just could not get the hang of the MDI situation I had been put on at diagnosis and was the living embodiment of why Protophane was referred to as Protopain.

I went to an information session and heard a women speaking about how much she loved using an insulin pump and what a difference it had made for her quality of life. Afterwards, I spoke with her and by the end of our chat, was convinced. I wanted one of those! (Impressionable little thing, aren’t I? #MarketersDream) This woman would become my pump trainer and the only diabetes educator I have ever seen.

At my next endo appointment, I marched in with the research I had done, the questions I needed answered and an expectation that by the end of the consultation, I would leave with details of how and when and where I would be getting my pump. Ha, the naivety!

My endo was absolutely not keen for me to take the pump road, ‘You’ve not had diabetes long enough,’ he told me, which confused me no end, because it already felt like a lifetime. ‘I think we should talk about this again after you’ve had diabetes for about 5 years. Yes?’

Well, no. That was the last time I saw him. I spent the next six months endo shopping until I found one that (I was promised) would agree to helping me on a way to a pump. I walked in and made it very clear why I was there and he nodded straight away. ‘Yep – we can do that,’ and picked up the phone. And about three months later, I was a pumper. This particular endo and I parted ways not long after because I needed someone who was far more expert in the diabetes and pregnancy track I wanted to embark, but I have always been grateful that I found him and his open attitude to diabetes technology.

When CGM was launched into Australia, I spoke to my diabetes educator and asked her to fill in the required paperwork to get me sensing. She sent the form off the day we spoke.

And the same has happened when I have wanted to change or upgrade diabetes devices.

What I am trying to say is that this has all been led by me. So when A/Prof Varcoe spoke about the importance and value of connecting with PWD and telling them about these new vascular procedures to save limbs and prevent major amputations, it made perfect sense. He urged that we needed PWD to be the ones who, if told they needed to have an amputation, spoke up and asked for a second or third opinion, specifically asking about the very procedure he had just discussed.

This ground swell of action is what causes change, but we need to know exactly what to ask for. It’s far more effective to ask the question ‘Can my artery be revascularised? I understand there is surgery than can do that and may prevent the need for a major amputation.’ rather than just ‘Is there nothing more than can be done?’

So many of the people with diabetes I know are using particular drugs or devices because they have asked for them – not because they were recommended or suggested by their HCP. And this is why PWD need to have all the information. This is why device companies should be going straight to the consumer to share information, not expecting it to happen through HCPs. (I know that there has been discomfort from some HCPs at Abbott’s direct to consumer promotion of Libre – and the fact that PWD can order themselves without needing to see a HCP, but why would that be the case?)

But it is more than just making sure the information is there for PWD to know and see. It is a complete and utter reshaping of a system that a lot of times actually isn’t about empowerment. There are still too many ‘old school’, patriarchal attitudes that dictate care choices to the PWD instead of accepting and encouraging us to lead the way for our own care. I think things are changing, but I also think they are changing far too slowly.

Why don’t we do this?

October 12, 2016 in Awareness, Complications, Diabetes | 5 comments

Last night, I heard the most amazing talk about diabetes-related foot complications. (There are words I never thought I’d write.)

Because actually, the talk was about PREVENTION of amputations. Now, I’m not talking about prevention in the sense of ‘Check your feet daily, see a HCP regularly for a foot check or if you identify problems, and wear sensible shoes’, advice I have always taken selectively. (Happy to check my feet, happy to have a HCP check my feet. But I just bought these boots…so I guess two out of three ain’t bad.) This talk was about prevention of major amputations, thanks to different surgical techniques that can save limbs.

A/Professor Ramon Varcoe, a vascular surgeon from Prince of Wales Hospital in NSW, is my new hero. I listened to his talk absolutely enthralled and amazed. Let me count the ways I adored what he said last night:

He didn’t show gory pictures. (Thank you. Thank you. Thank.You.)
He acknowledged that diabetes is a really difficult condition to live with.
Furthermore, he acknowledged that those who have needed diabetes-related amputations face a really tough future.
He explained in terms this pinhead could understand the techniques he uses to save legs from needing to be amputated. In VERY basic terms it is a technique similar to the surgery used to open arteries in the heart… a fine wire is inserted into the artery and a ‘balloon’ is used to open the artery. (He concluded his explanation by saying ‘Bob’s your uncle; we can ‘revascularise’ the limb’, making it sound so simple that anyone could do it in their kitchen on a rainy afternoon. For the record, maybe don’t do this in the kitchen on a rainy – or sunny – afternoon.)
One way he framed his thinking was to say ‘Think of this as a ‘foot attack, the same as a heart attack’.
He also (almost regretfully) told the audience that very few vascular surgeons perform this surgery and then went on to list the barriers: diabetes foot disease is not sexy; there is limited expertise in the filed now and learning the techniques requires retraining and great skill and there is no kudos (unlike heart surgery which does draw glory!)….Another example of the image problem that diabetes has!
He explained that this technique is less invasive, far, far cheaper to perform, hospital stays are less, the PWD recovers much quicker, and – GET THIS! – the results are outstanding. In fact, reducing major amputations by 62%.
He explored how we make people with diabetes know this technique for saving limbs is available, and said that it is really, really important to inform PWD about it so that they can ASK for it and not just accept a diagnosis of requiring an amputation. He said that this was the group that could really drive change here, by demanding that they have the best treatment possible. (I nearly stood up and applauded at that, but glad I didn’t because the event was at Parliament House and there were a lot of MPs and senators in the room and I was trying to behave).
He called on better training of clinicians and campaigns to raise awareness of the procedure directly to PWD (you know – an amputations prevention initiative?!) which is exactly what we need. EXACTLTY.
And he finished by saying: ‘My vision is for there to be no more major amputations. I hate this operation. Major amputations destroy people and destroy families. And it’s preventable.’

A/Professor Ramon Varcoe

This event was coordinated by Diabetes Australia in association with the Parliamentary Friends of Diabetes Support Group, co-chaired by Rowan Ramsey MP and Graham Perrett MP. I work for Diabetes Australia.

Forgotten lows

October 11, 2016 in Diabetes, Hypo, Lows, Real life | 3 comments

I had a low last week that knocked me for six. It certainly wasn’t the worst hypo I have ever had – far from it actually. But it had been a while since I had one like this. In fact, since I started eating low(er) carb. (I’m still reluctant to call it low carb, because I am really not trying to stick to a certain amount of carbs per day. But to give you an idea, it’s a rare day that I eat more than 80 grams.)

But last week, I did. My usual Japanese food takeaway place was out of sashimi which is my favourite quick lunch. So, I ordered a sushi roll and a cup of miso and off I went.

Now white rice is evil to me. It really is. I love it, but have never managed it! In 18 years of type 1, I have never worked out how to bolus for it. I am better (although not great) with pasta and other carb-heavy foods. But rice? Just hopeless! I would just guess, hope that I was close to right and then kept a close eye on my numbers afterwards, correcting as necessary.

On Friday, I was nowhere near right. No.Where. I watched my CGM line start to rise and rise and rise pretty quickly after I ate, resisting the urge to bolus before I hit the upper limit on my graph. And I am so glad I didn’t because after the spike, came the plummet. Insulin still on board, and two arrows pointing down.

I tried to intervene, but it was too late. Suddenly, my lips starting tingling, I realised I was sweating a lot and my thought process was all over the place. I read the same email five times, started five different responses and had no idea what I was trying to say.

I grabbed a juice box, and drank the lot in one gulp. The desperate low feeling of ‘I.Am.Going.ToDie’ overtook me as I stabbed another straw into another juice box and looked around for what else I could consume that would help, grabbing a handful of jellybeans; spooning honey from the jar and pouring some milk into a bowl with cereal.

And then I stopped. I willed myself to breathe, counting up as I inhaled, down as I exhaled, trying to not get the numbers messed up. I concentrated on my heartrate. I walked away from the food on the kitchen counter and sat at the table, focusing on the artwork above the wood-fire oven that the kidlet and I had done years ago when she was only about 5 years old. I thought about us spreading down a drop sheet on the front veranda of our old house, sitting the large canvas on top of it and emptying tube after tube of paint onto it. ‘It’s like a Jackson Pollock painting,’ she said, signing the finished artwork with her name and then adding ‘and Mummy’ afterwards.

Slowly, my heartbeat returned to normal. I could count my breathing without difficulty. I stopped thinking that I was going to pass out. My clothes were drenched from the sweating, though and now I was shaking because I was cold. I gingerly walked into the bedroom, pulled off my top and put on a thick jumper, wrapping a scarf around my neck for good measure.

I looked at my CGM graph on my iPhone and saw the quick spike and the sudden crash – a sight I’d not seen for some time. I lay down on my bed and closed my eyes for a moment, which became an hour and when I woke, the ‘hit-by-a-bus’ hypo hangover had taken over my body.

All this because of a sushi roll gone wrong. It wasn’t even a delicious doughnut or cupcake, I thought. It took me almost 24 hours to get back on track. The over-treating had to be corrected and I tried to not over correct, but that failed and another low in the middle of the night messed me up a little more.

This was a forgotten low. And I’m not particularly inclined to have another one in the near future to remind me again.