The Good News

I’m not one to write about the latest news on diabetes. It’s not because there aren’t amazing new technologies, cures and treatment protocols on the horizon. It’s just that I’d rather focus on what’s tangible and practical in my personal day to day management. When someone sends me a message with the latest ‘cinnamon’ cure I find myself ranting about the differences between type 1 and type 2 diabetes and how there is no cure for type 1. There are only useful management protocols that may or may not consistently work. A lot of my friends who were diagnosed years ago were told not to worry because a cure was coming in five years.  More than five years have come and gone and we are all still waiting.

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One of the biggest and scariest moments for me was realising that I had a life threatening, incurable disease. I was on the yoga mat in a pose when it dawned on me. I cannot adequately describe that moment. It was a mixture of shock, disbelief, denial and confusion. Coming to terms with that feeling and finding acceptance has been the core of my practice since.  I guess anyone when faced with any kind of diagnosis, or crisis goes through this. That’s why community and support are so needed.

What I am excited about in the diabetes space is how we can thrive with diabetes. There are some really cool organisations out there to tap into. As a regular contributor to Beyond Type 1 I am inspired by how they raised awareness through brilliant community building campaigns. It isn’t just about finding a cure, it’s about networking, inspiration and collaboration. Another powerful resource is Diabetes Daily. Daily updates and articles on all types of diabetes, recipes and research and a thriving community, I feel blessed to have so much information and support on tap.

In fact, today I received an email from the team at Diabetes Daily about a large study that identifies the habits of successful diabetes management. Compiled by the thrivable insights research panel the study looked at what habits those with optimal glycemic have in common? They surveyed 1,938 people and I’m pretty sure I was one of them.

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The survey analysis data demonstrated that those with type 1 and type 2 diabetes who have optimal glycemic control are significantly more likely to:

  • utilize low-carbohydrate diets
  • use insulin pumps
  • exercise regularly

Moreover, patients with type 1 diabetes were significantly more likely to:

  • use a continuous glucose monitor (CGM)
  • eat consistent meals daily
  • incorporate the protein content of their meal in calculating their insulin doses

The comprehensive data report was published on October 16, 2019 and can be found here: Habits of a Great A1c Survey Data Report. The lead researcher, Maria Muccioli, Ph.D, is also available for interviews about the findings. 

To me the best way to control my diabetes is a no brainer. I have heard many people in the diabetes space talk about diabetes as carb intolerance. It’s not that we shouldn’t include carbs its just how much. I find that about 100 carbs per day is my maximum. In my last blog on diet I talked about eating at the same time and roughly the same thing every day. I have also emphasised how important it is to have some way of seeing blood glucose data in real time. The more I know what foods do what, the easier it is to manage my levels . And you know how much I love exercise. Yoga for diabetes is the bomb!

That’s why I get all nerdy about these kind of studies. The more evidence we have of what enables us to live well with this condition, the more health care providers will come onboard. Believe it or not up until a year or two ago my doctor was still giving me a hard time for my dietary choices. Luckily education around this is shifting.

When I personally reflect on how I feel about diabetes management and the resources we have available I feel lucky. When my great grandfather had diabetes, there was no insulin and no education around diabetes. He died of diabetes complications. Ironically my birthday falls on the month and day of his passing. A powerful reminder of how grateful I am to have the education, choices and support to live a long, healthy and happy life with diabetes. Thats the good news!

See you tomorrow #NDAM #DiabetesAwarenessMonth

with great respect…

rachel

The number of tests?

“How many times do you test per day?” this was the question put to me this morning by the Accuchek Guide rep while I was trying to replace my meter. “About twenty,” I replied adding that my blood sugar can tend to be volatile. The rep murmured a sympathetic sound. But I wondered what she really thought.

I know what my Endo thinks. He’s mentioned to me on more than one occasion that I am obsessed with checking.  Do I really need to wake up throughout the night to check? Ummm…YES!  It’s not like I set an alarm or anything, I seem to naturally wake up between 1-3 times per night anyway so why not check?

Overnight lows are the worst. In the days before I had the whole diet thing mastered I’d wake up and have to eat at 2 am. Nothing worse than sitting by myself in the kitchen watching the clock tick over while I wait for my blood sugar to rise.

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And what about in the day? Do I really need to check every hour? I actually don’t check every hour, it depends on whether I’m insulin resistant or have had some sort of injection blunder. Most mornings I can go from breakfast to lunch without even checking. I know my liver is doing its thing, dumping some extra glycogen into my system so it’s rare for me to drop. It’s usually between 12-5 pm that I like to be vigilant. I can never seem to get my lunchtime bolus right, and then there might be some extra exercise thrown in the mix around 4 pm.

Checking vigilantly when you live with Type 1 Diabetes is a make or break situation. Especially if you can’t tell when your low. Its called hypo unawareness, it happens when you have too many lows and the body stops recognising the feeling of being low. Like my horrible hypo two weeks ago, before I knew it I’d dropped to 3.2 mmol. Scary!

It was also after that horrible hypo and sharing it here that some friends encouraged me to use a CGM (continuous glucose monitor). This is something I would love to have but sadly here in Australia there is no subsidy for someone like me. To be eligible for the Dexcom or Medtronic CGM you have to be hypo unaware and admitted to hospital more than once or under the age of 21.

The Freestyle libre flash glucose system is also on offer here, but this has no subsidy at all. I have written before on the blog about how much I love this product. Sleek, discreet and accurate using it has increased my peace of mind and saved my finger tips. I’ve attended  product launches and #dx2Melbourne and can honestly share the company, its ethos and care are palpable. I’ve even lobbied the government to make access affordable for people like me and had a small feature in the Noosa News. In spite of my passion and efforts, I still can’t justify spending $100 every fortnight.

But wait ho… my wonderful parents, after reading my blog, gave me the best early christmas gift ever! A 6 months supply of the freestyle libre. I am touched and grateful.

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Here I am ready to launch. So excited to have some time off from the drudgery of test strips and the ability to see whats actually happening minute by minute with the food I am eating, the insulin I am taking and the sleep I’m sleeping. I’ll probably put one in starting next week so stay tuned…

See you tomorrow #NDAM #DiabetesAwarenessMonth

with great respect…

rachel

Writer’s Envy

I don’t think I’ve ever said this but I have writers envy. I know…I know…it’s probably nuts to say this but after spending two days with Australia’s top diabetes bloggers and advocates at the Dx2sydney2018 event hosted by Abbot, it’s hard not to feel awestruck in their presence.

My jaw dropped when Renza Scibilia from Diabetogenic casually mentioned that she knows exactly how long it takes her to write a blog and that it’s all of 7 minutes. When I pointed out how incredible that was because I swear each piece of writing is breathtakingly brilliant and meaningful and something I believe every person with diabetes should read, she insists that because she doesn’t review what she writes or even check it for grammar that surely it’s not.

IMG_2903Each person at the Dx2 event has a strong voice in the diabetes space here in Australia. I read what they write voraciously and they are no less passionate in person. Behind every blog is a person with a message and a mission. I feel grateful to be amongst them even though I do feel like the odd one out. As one of our presenters put it, I’m the yoga lady.

This was my second Dx2event. The last one was in Melbourne and full disclosure: Abbot paid for my accommodation, travel, and food with no expectation that I would write about the event or my experiences. The opinions shared here are my own.

The main purpose of the event is to share conversations about diabetes, diabetes tech, and advocacy. We were also there to trial the freestyle librelink an app which works on both Android and iPhone.  You use your phone to scan instead of the reader. I’ll talk more about the app and my experience in a sec.

When Renza asked us to share one thing that we’d received from attending it was hard to know what to say. Having just returned from the US and meeting so many bloggers and advocates who are all doing such great work I couldn’t help reflecting on how different our role as bloggers are here in Australia. We are not fighting for the same things all though we are living with the same condition. Here our medical supplies and insulin is subsidized. We have organizations that lobby for us at the federal level and we also have state organizations that advocate and spread awareness.

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The Online Diabetes Community is still relatively new. We are a small band of warriors who aren’t afraid to speak to tech companies and let them know what they could do better. We are willing to go off-label and experiment to have better control and we don’t shy away from expressing frustration and our vulnerability.

And at the same time, we are dealing with health care providers who are slow to adopt technology and organizations that have outdated systems. Everyone is doing their best to upgrade the dinosaur but as Greg Johnson the CEO of Diabetes Australia shared, the main issue is that we don’t have interoperability, the ability of computer systems or software to exchange and make use of information. Put simply, when the devices can’t speak to each other it’s a pain in the bum!

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That’s why upgrades like the freestyle librelink are exciting and useful.

As Renza put it in her blog, “ 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.”

Yep, making life with diabetes easier is my goal too. It’s why I mentioned the possibility of a pump trial in my previous blog and why I diligently stick to a twice daily yoga practice to keep up my insulin sensitivity. Handy apps and diabetes tech definitely helps too.

As most of you know I am a HUGE fan of the freestyle libre. Definitely, love the Australian version with the one-hour startup and 14-day lifespan. When I first heard about the librelink I was super keen to try it. Now that I have I am totally on board and here’s why;

  1. I love the idea of being able to scan directly from my phone
  2. There’s more info on the app than on the reader like a home screen which has the last reading you took, your glucose graph and estimated Hba1c
  3. You can scroll back over the data in the graph to see what your readings were
  4. It has the same great features as the reader with better color combos.
  5. It has a text sound feature kind of like Siri where you can audibly hear your glucose readings if you’re driving or its night time

 

Even though I love the app there were also a few hiccups during the 24-hour trial.

  1. It only runs on an iPhone 7 or higher or an android phone. I don’t have an iPhone 7( I’m still happy with my 5s) so not sure I’d want to purchase a cheap android as then I’d still be stuck with an extra device in my bag.
  2. On the iPhone you have to make sure the app is open and you have to push a “ check glucose” button. You can’t just wave the phone over the reader with the phone on screensaver. This is not ideal for overnight so you would still need to use the reader.
  3. The phone has to be placed in a certain spot to scan the sensor. Even a few millimeters out and it misses it. Which means sometimes you’re doing a lot of waving around with your phone which could look anything but discreet.
  4. I kept getting an error message telling me the sensor was already linked to a different device. I usually had to wait a few seconds for it to pass but it wasn’t an instant reading.

You can definitely use the reader and the phone at the same time as long as you scan the sensor with the reader first and then scan the phone within the 60 minute start-up period. I like this option because it means you can use the phone when out and about and the reader at night for the convenience of an instant scan.

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The phone like the reader doesn’t have alarms, something blogger Matt Bendall ardently argued for during the event. So even with the librelink app, it’s still a flash glucose monitoring system. Something we discussed too was the subject of data overwhelm and how the freestyle libre offers an alternative to that. Having never used a Dexcom or Medtronic myself I can’t comment or compare. Personally, I like the scan option which means I test when I want to. I definitely get an adrenaline rush when I see a trending arrow that goes straight down or up so I couldn’t imagine how much panic would ensue if I had alarms. But that’s me. I tend to overreact to everything and why I do yoga!

So what do I think? I’m giving it the Two Thumbs UP. The app is launching June 5th here in Australia and I’ll be linking up as soon as I upgrade my phone. Now I have an incentive.

I am so grateful that Abbot hosts these Dx2events, not just because we get to try out new gadgets but because I get to spend two days learning more about what it means to live with diabetes. There is nothing more precious than peer support, friendship and being able to laugh about things that no one else would understand.

As someone shared on the last day it’s these sorts of events that fill up our cups. Right now mines’s full to overflowing.

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If you’d like to check out my brilliant blogger buddies here in Australia click the links below

Renza of Diabetogenic

Frank of Type 1 Writes

Drew of Drew’s Daily Dose

Melinda of Twice Diabetes

Tanya of The Leveled Life

David of Bionic Wookiee

Jenna from Typeonevibes

Ashley from Bitter Sweet Diagnosis

Matt Bendall

Kim Henshaw