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

Traveling, trials, and tribulations

About six weeks ago I was approached by Abbot here in the US to trial their new Freestyle Libre System. They sent me two free sensors and a reader and asked me to post on social media and here on the blog about my honest opinion of the product.

As some of you know I have used the Freestyle Libre system in Australia and love it. So trialing the US version has been a no-brainer. Even though I have used the product on and off for over a year I was excited to trial the Freestyle Libre System in the US because of its new and different features.

Instead of a start-up period of one hour, it has a 12- hour warm-up period. I inserted mine in the morning so it was ready to read by dinner time which meant I could feel more secure overnight when my levels are more volatile.

The sensors last for 10 days (as opposed to 14) and you need a prescription from your doctor. On average the cost for a sensor in the US seems to be less than Australia. I think it depends on the Pharmacy you get them from here and the co-pay coverage by your insurance.

I popped my sensor in on the first day with a FB live (see below) it was absolutely painless and they’ve improved the adhesive factor. You get a reading by passing the reader over the sensor. It has good range and works through several layers of clothing. i.e winter jackets!

After patiently waiting for it to warm up (12 hours seemed like forever) the readings came in almost 40 mg/dl lower than the fingerstick readings taken with the reader. The Freestyle Libre System comes with a reader that can take blood glucose fingerstick readings and even Ketone readings with FreeStyle Precision Neo and Ketone test strips.

In my previous experience, it can take up to 24 hrs. from insertion for fingerstick readings to match the sensor.  Sadly they continued to be out after more than 48 hrs. It wasn’t a great start and bummed me out, especially because I had to get up at 3 am and treat what I thought was a low-low blood sugar which in the end wasn’t one.

I decided to call customer service to let them know what was up. Can I just say, Abbot customer service rocks! It was such a great experience. They were really thorough and asked a ton of questions about the readings I was getting to the kind of test strips I was using. They compared all sorts of data to determine whether it was a reader or sensor error.

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In the end, they decided to send me a new reader and sensor. I was advised that my new sensor and meter would arrive the next day or I could go to my local pharmacy to pick one up. They were courteous, thoughtful, kind and it really felt like they cared. Luckily Abbott had given me two free sensors to trial so after removing the first, I popped in the second (on the opposite arm) and crossed my fingers.

Success! The sensor was neck and neck with my fingerstick readings all the way. I’ve never worn it on the back of my right arm before (I favor the left side) so I was curious to see if having it on my dominant arm would affect the readings. But it hasn’t made a difference.

I also decided to throw caution to the wind to test the Freestyle Libre’s durability getting it wet, pulling clothes on and off and doing my vigorous yoga practice. It stuck like a dream throughout. However, numbers could be almost 20 mg/dl out after excessive movement like going up a flight of stairs or from indoors to outdoors, doing handstands or getting out of the shower. When I was settled the readings were consistent. So if I saw a trend arrow heading up or down I’d wait about 5 minutes and scan again.

I totally love the convenience of being able to scan as many times as I like and how I can see everything plotted on a graph. It was interesting to see how I dipped low in my sleep and then sharply rose high and then leveled off. Those kinds of readings helped me to adjust my basal dose.

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Halfway through the trial, I flew to Utah. I was advised not to go through the scanners and to ask for a pat down. The security guy at JFK tried to convince me he knew better. Telling me that the waves of the scanner were no worse than using a cell phone. I waved my doctors letter at him reiterating I wanted to opt out.

The device survived the flight (as did I) and gave me peace of mind. Having to fumble for my glucometer in the middle of traveling can be a real hassle. I remember taking a flight back from Munich where the passengers next to me also lived with Diabetes (type 2). Every time I checked my meter they looked over my shoulder and made a comment and asked if I was okay. It was sweet but bugged me and in the end, I went and checked in the restroom.  Scanning discreetly throughout the flight meant I could keep my levels to myself.

I also caught a Sinus cold during the trip which meant consistently higher readings and the necessity to increase my insulin dosage to correct. Having the Freestyle Libre system on meant I could keep a close eye on my levels which helped me deal with the extra stress of traveling while unwell.

Even though there were a few bumps at the start of the 10-day trial, I’m giving the FreeStyle Libre System the double thumbs up. I still have one sensor left to go so stay tuned for my next update on the blog and on Instagram and Facebook.

If you’d like to learn more about the Freestyle Libre System you can visit their US site here  

Why prick when your can scan?

Disclosure: I’ve just returned from the two-day #dx2Melbourne blogging event hosted by Abbot, the makers of the Freestyle libre, a flash glucose monitoring technology which has the tag line, “Why prick when you can scan?” I was sponsored by Abbott to participate in the program. They paid for my flight to Melbourne, put me up in a hotel, gave me two free sensors, a reader, and a goodie bag. I am in no way obligated to write about my experience at the event and the opinions and views expressed here are my own.

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I was first introduced to the freestyle libre flash glucose monitoring system last year by my CDE and Endo. They thought, that being a LADA and still producing some insulin, that it would be interesting to see what sort of data they could glean from seeing my levels plotted on a graph over time. They were also curious to see how my yoga practice and low carb diet would affect things.

The two-week trial went like a dream. My levels stayed in range, I hardly knew the sensor was there and for the first time since being diagnosed I slept through the night. When I went back for the evaluation they asked why I thought my levels had been so good? (because truly they’ve NEVER been that good)

All I could think of was that my fear of going low had been taken out of the equation. Overall I was less stressed and more confident.

After going through quite a few sensors and having a range of experiences, both great and not so great since the initial trial, I was excited to attend the #dx2Melbourne event and hear more about the product. I was also very curious to meet other bloggers who live with type 1 diabetes. In fact, I was so excited that I felt like one of those kids who are about to meet their pen pals for the first time at camp.

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I think I might need to devote a whole other blog to what it felt like to meet some of my diabetes heroes for the first time but in a nut shell… it was inspiring, intense, reassuring and heartfelt. Each person manages their life with diabetes in a unique way. Our discussions were robust (a word that everyone used to describe our passionate feelings) and there was definitely a lot of strong opinions. What I loved most was that none of us shied away from expressing different viewpoints on any given topic.

Being new to the discussion (most of the bloggers were at the #dx2Sydney event when the freestyle libre launched last year) I found myself stepping back, taking a breath and pondering.

One thing that stood out strongly was that because we are bloggers in the diabetes space we have to be aware of what’s happening with diabetes not only in Australia but globally.

That awareness inspires advocacy.

Most people living with diabetes aren’t going beyond what doctors are telling them or seeking out communities and or more information.  It certainly didn’t occur to me when I was first diagnosed. In fact, I remember one doctor telling me NOT to google diabetes and that I could live normally as long as I took insulin, ate well and exercised.

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When Greg Johnson the CEO of Diabetes Australia spoke during the event he disclosed that the issues at the founding of the organization in 1957 are the issues we are still dealing with today, “Insulin does NOT solve the problem.”

That’s why gatherings, support groups and events like these are so important. I can’t begin to express what it feels like to sit at lunch with people who casually check their blood sugar, and then take their shot. No one judges or questions because what we do to manage our diabetes is part of our every day lives.

So besides making lots of new dia-buddies and normalizing my life with diabetes, this event did have great takeaways that I’d love to share.

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First up was Mahmood Kazemi, senior director of Abbott global medical & scientific affairs. I’m not really a statistics gal but I was impressed when he shared that after gathering unidentifiable data from over 55,343 readers (the device you scan over the sensor to find out your BG level) an average of 16.3 scans a day affords better glucose control and lower A1c’s.

He also mentioned that things like ingesting large amounts of vitamin C, exposing the sensor to sunlight, or fast changes in environment like going from a dark to light space can throw off sensor readings. Abbott takes sensor faults seriously and sometimes they even reverse engineer a faulty sensor.

There were some questions from the group about scar tissue build up around the sensors, allergic reactions and whether Abbot will be recommending other sites, besides the backs of the arms.  Apparently, they haven’t tested accuracy “officially” beyond the arm sites but anecdotal evidence suggests that the accuracy remains consistent wherever you put it.

One of our Bloggers, Matt was keen to know when the sensor would have an alarm Mahmood reminded us that the device is not designed to be CGM, it’s a different technology with a different purpose.

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As a group we discussed the pro’s and cons of blogging…and later we talked more with guest speaker Isabelle Skinner about online personas and how the digital community can bring people together to create change. We had another robust discussion about the difference between coercion and saying things like, “this worked for me to help me manage my diabetes.” And what it means to be a trustworthy genuine source of information online.

A highlight of the event was heading into the Melbourne CBD to learn how to create great images for our blogs as was the live webcast on the emotional side of living with diabetes with Lisa Robins who specializes in diabetes clinical psychology.

The big question?

Did we think it would be useful to have professional psychological support on diagnosis (YES!) and what are ways that we stay positive with diabetes.

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Something I shared was how gratitude had really helped me. Focusing on what’s working rather than what’s not and giving myself a break…

Which included not being offended when the planned yoga for diabetes class with the group early Sunday morning was canceled.  I didn’t get a chance to ask but am curious to know why no one wanted to attend the free class. The lack of attendance has sparked a determination in me to address the issue of ignorance around this word YOGA and what people feel it represents.

More food for that in blogs to come….

In the meantime, I would highly recommend checking out what my fellow bloggers had to say about their experience of the event.

Renza of Diabetogenic

Frank of Type 1 Writes

Matt of Afrezza Down Under

Drew of Drew’s Daily Dose

Georgie of Lazy Pancreas

Kim of 1 Type 1 and Oz Diabetes Online Community

Melinda of Twice Diabetes

Tanya of The Leveled Life

Helen of Diabetes Can’t Stop Me

Alana of The Enlightened Diabetic

With great respect… Rachel

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P.S.  What if there was an easy way to feel better, have extra confidence and be more relaxed about managing your diabetes?

Yoga absolutely helped me and I’m convinced it can help you too

Join me on September 1, 2017 for my free yoga challenge

“Better Diabetes Management in 7 steps with Yoga”