Technology

My New Look Diabetes

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This is what my diabetes currently looks like.

One evening injection of Lantus, which is currently giving me freedom from attachment and freedom from thinking about rapid acting basal insulin. After a few mild night time lows, eight units seems to be the magic number.

One infusion site still stuck to my stomach, which I am able to connect my insulin pump to at mealtimes to deliver boluses.

One late Animas Vibe insulin pump, which I now carry around in my diabetes travel case rather than on me. My insulin pump offers me the convenience of an ezCarb calculator at mealtimes, and no needles to deal with while I’m on the go. 

This was a very spontaneous decision that I made in the space of an hour over the weekend. I honestly had not had a single, fleeting thought cross my mind in the days leading up to it.

Despite being only a few days into this pump vacation, I feel as though I have finally escaped the feeling of a dog chasing its tail while managing my blood sugars throughout most of April. Lately, there have been a few too many highs and a few too many lows.

Just as I wouldn’t enjoy eating a ham sandwich for lunch every day, I feel like I need to shake things up every once in a while in order to me feeling fresh and motivated to manage blood sugars. Whether that be a new sticker for my meter, a Rockadex patch for my FreeStyle Libre, or in this case a new insulin regimen.

Every time I do this, I learn something new.

Rather than rushing into splitting Lantus injections after some high blood sugar levels, this time I’ve decided to wait a few days for my basal insulin to settle in.

Yep, Lantus does take some time to settle in, in my experience.

After reconnecting to my pump following my last break in December, I discovered that residual Lantus hung around in my system beyond its 24 hours, causing some lows in the first 24 hours.

So this time, I wanted to wait a good 2-3 days for my Lantus to settle in before coming to any conclusions. So far, one injection per day is treating my blood sugar levels kindly. Besides, I was feeling that split injections were just too many variables to play with at the end of my last break.

I’m sticking with my evening injection, which keeps me stable through the night. I only experience a slight effect of dawn phenomenon after I first wake up, which I can manage with an extra unit or two of rapid acting insulin.

Safe to say, I’m feeling a bit more enthusiastic towards diabetes this week.

Stay tuned.

Why I Am Waiting.

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Unless you’ve been living under a rock, you’ve likely heard of the whole We Are Not Waiting movement. You know, a bunch of people who are hacking their diabetes devices in order to enhance their functionality. Such as transmitting blood glucose data to other devices, turning a FreeStyle Libre into a CGM with alarms and even closing the loop between an insulin pump and a CGM.

You need look no further than the name of this movement to find the reason for it. People with diabetes really are at the mercy of device companies, regulatory bodies or, in the case of the snippet I read in yesterday’s paper, researchers who are currently attempting to regenerate organs in sheep!

I don’t see a cure on the horizon in the next ten, twenty or even thirty years. The business of business is business. Advancements no longer feel like a solution, but rather a pathway to the next enhancement or product. Both consumers and device companies seem too focused on feeding this diabetes technology frenzy.

The most realistic advancement that I do see on the horizon is a commercial closed loop system. That is, an insulin pump that communicates with a Continuous Glucose Monitor to automatically regulate blood glucose levels. There are a few systems currently in development in the US. Yet I don’t realistically see any of these getting into my hands here in Australia in the next five, dare I say ten, years.

I need look no further than the current insulin pump situation here in Australia. If online communities are anything to go by, Aussies are crying out for a new insulin pump option to hit the market here. There are insulin pumps listed on the TGA website that can be legally sold here in Australia, and yet we are left waiting at the mercy of distributors, device companies, marketers, financial strategists, and all of the other powers that be.

Better yet, it’s 2018 and people are still forced to do all sorts of questionable things in the name of INSULIN, the drug with a price tag that is skyrocketing by the day.

I have been reading up on the likes of hacking a FreeStyle Libre system and closing the loop over the past couple of months. There is a growing community of people here in Australia who are buidling and running homemade closed loop systems, and you can lurk or join them here.

I, however, have made the regrettable decision that I will have to wait.

For starters, I would have to commit to full time Continuous Glucose Monitoring. This is not currently subsidised for adults like me here in Australia. Nor is this, as well as the other hardware required, in my current budget while I am working toward other financial and career goals. Secondly, I don’t own a pump that is loop-able, and I don’t like my chances of being able to get my hands on one.

Finally, I’m not sure that I would be able to give any ‘we are not waiting’ efforts the due focus that they would inevitably require at the moment, with a lot of other priorities on my mind for the year ahead. As one Facebook group admin puts it, don’t bother asking for the idiots guide as these solutions aren’t for the faint headed!

I am frustrated. Not because I’m envious of others who do have the means to do so. Not because I can’t manage. Not because I don’t have good health, excellent access, good people around me or a good quality of life.

I am frustrated, because people with diabetes deserve so much better than what they’re currently getting.

Technology Changing Diabetes Outcomes at #ADSADEA2017

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Another standout session from my time at the ADS-ADEA conference was a symposium on technologies changing digital health outcomes.

Professor Brian Oldenburg introduced us to the ‘new’ health communications landscape in a digital era, which was nothing new to many of the consumers in the room! The promise of technology is great, but how do we ensure that it has sufficient reach and sustainability? With technology ever evolving and enhancing, keeping up with it is a real issue.

The buzz word of the conference popped up once again, with talk of the need for ‘person centred’ design in these digital technologies. I felt that this would be a great opportunity to engage with digitally savvy consumers, such as the DA People’s Voice team who were all there frantically tweeting in the room! I would hope that the healthcare professionals in the room were reassured by the promise of digital technologies complementing, rather than replacing their fundamental role.

Digital health programs were challenged by their usability, engagement and outcomes. As we were introduced to a digital diabetes coach, I was really struggling to see how such a program would be engaging or motivating. While it’s true there is no judgement in a robot’s voice, there are also no expressions of empathy or other human elements that help us to foster trust. I was also skeptical that older people would have the computer literacy or appreciation for these programs. Many still prefer to be served by a teller at the bank, or by a person at the checkout. I’m a big advocate for providing options and not forcing technology on those who don’t want it. However, I was surprised to hear that these programs were being taken up by both older and younger people.

You can see the digital health coach for yourself and decide:

Bec Johnson of the Telethon Type 1 Diabetes Family Centre was next to take to the stage, talking to us about how digital technologies have played a fundamental role in helping the family centre to reach across the whole of WA. Can I just say how nice it was to sit there as a West Australian, having something that the East Coasters around me envied? You can check out my sneak peek inside the Family Centre right here.

Bec began talking about how isolating type 1 was for her, and her sentiments just echoed among many of the consumers in the room. She shared that it took 10 years until she first began connecting to other people with diabetes through the Reality Check forums here in Australia. Those forums were her saviour, and she knew that online communities would be a pivotal part of building a type 1 community here in WA.

The Family Centre’s closed community Facebook group is about connections, rather than information sharing. I was rather impressed as Bec told us that the group had ‘conditioned’ this culture among the group, with many participants quick to politely call out posts seeking clinical advice. New entrants to the group are screened with a series of questions, in order to maintain a safe space for parents to share some of their deepest darkest thoughts. The Facebook group also allows consultation with the community on events or programs, in order to deliver the needs of the community.

Bec highlighted the Diabetes Detective program, which would not be possible without shared CGM data and remote contact with Diabetes Educator Amy Rush to smooth out any blood sugar issues. Other examples of online education from the Family Centre include the ‘Cyber Carbs’ online carb counting course and Type 1 Babysitters training. Bec also touched on online crowdfunding, raising an impressive $10,000 for the Family Centre for her swim to Rottnest Island earlier this year.

I was only saying last night how it often feels that the contribution of an actual person with diabetes doesn’t feel valued by healthcare professionals, conference organisers, organisations and companies in the diabetes space.

What I loved most about Bec’s talk was how much it proved the value of having a person who has hands on experience in diabetes, working in diabetes.

Also, I’d really love to see the foundation of the Telethon Type 1 Community translate into something for young adults one day.

Disclosures: Diabetes Australia provided me with a media pass to attend the ADS-ADEA 2017 conference, with the view that I was interested in attending and delivering my own, honest insights to the wider diabetes community.

Type 1 Tech: A Patient’s Perspective

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A few weeks back I gave a presentation to a group of healthcare professionals on my journey with type 1 diabetes technology, and how it has helped and hindered me. You’ve probably seen bits and pieces of this talk scattered across various blog posts, but it was nice to put this all into one piece of writing. Strap yourself in – this is a long one!

I was one of the privileged few who got to join the diagnosed-a-few-weeks-before-turning-18-club. I was midway through my first semester of uni, working my first real job, and driving with my Provisional license. Until type 1 diabetes came along in May 2010.

For the first six years, I managed my diabetes on Multiple Daily Injections. This meant one shot of Lantus insulin for my basal every night, and Novorapid injections with my meals. Injections were frustrating. I never felt I could get my Lantus dose quite right. Although I had learned to carb count, I lost the motivation to do it, because I never really saw any results. I was guessing most of my insulin doses, and there were lots of exhausting lows and highs.

Injections were inconvenient, especially when I was out. I often found myself putting off corrections, and giving my insulin doses after a meal was over. I kept blaming myself for what I ate. I often felt riddled with feelings of guilt, and kept telling myself that I would snap out of my rut and get back on track with my management. But diabetes just felt very overwhelming, and impossible to manage.

Back then, blood glucose meters didn’t have all the bells and whistles they do today. Meters didn’t have USB ports. I had to keep that dreaded paper logbook of levels and insulin doses. It was an absolute pain to have to stop and record my levels, on top of all of the other diabetes management tasks. I often found myself filling in weeks of missing data prior to clinic day, and even fudging some. When my diabetes educator pointed to a spot in the logbook and asked me what happened here, Frank? I was left scratching my head trying to remember.

In 2015, I ventured online. I began writing my blog, Type 1 Writes. I began connecting with other people with diabetes through social media, and watched them share their experiences so candidly. I began reading more about diabetes, and developed a genuine interest in it. I no longer felt so conscious about having type 1 diabetes, but rather more motivated to better manage it.

Online, diabetes technology was often the hot talk of the town. A lot of people in the Diabetes Online Community used, and were passionate about technology. Here I was thinking pumps were only for young kids, or for people who were having a harder time with diabetes than I was.

My diabetes management wasn’t very crash hot at the time. The public system of care pushed me towards self management as soon as I was able, and I had lost touch with my diabetes educator for some time. Although my hba1c was sitting in a range that was considered “satisfactory” by my endocrinologist, I wasn’t happy. I knew that it was riddled with lows and highs. I didn’t feel great. I knew that I could do better. I couldn’t keep cruising along, and needed to speak up for what I wanted.

Towards the end of 2015, I began to consider an insulin pump. I went to an information evening hosted by Diabetes WA, and later got back in touch with my diabetes educator to discuss it. The decision to switch to an insulin pump was not something that I took lightly. I knew that a pump wouldn’t simply fix all of the problems I had with my diabetes. It would be a big responsibility. I was expecting a steep learning curve. And I knew that there was a greater risk of going into DKA.

I can still remember my diabetes educator asking me if I wanted to get the process started during that first session. Instead I decided to think about it, and made the decision at our next appointment in three month’s time.

Starting insulin pump therapy in May 2016 was like building the foundation that my diabetes management had been missing for so long.

There was the potential for so many more things to go wrong with a pump. Insulin cartridges needed to be filled and replaced every couple of days. Infusion sites needed to be changed, and rotated around on my stomach, every three days. Pump batteries need to be changed when the alarm sounded. I had to keep an eye on my pump line for air bubbles, that could restrict the insulin being delivered to me. I had to keep an eye on the infusion sites on my stomach for any signs of bruising or bleeding. Not to mention becoming comfortable with having a device attached to me while I sleep!

Site failures were a big hurdle for me in those initial months of pumping. I was using a 90 degree infusion set with an insertion device, and dealt with a lot of anxiety every time I had to change it. After every new site change, I became really paranoid over whether it was a failure or success. I would poke and prod my infusion site, trying to blindly detect a kinked cannula sitting underneath my skin. I would watch the colour of the skin around my infusion sites like a hawk, looking for any signs of bruising or bleeding. I would stand on edge while my pump was delivering an insulin bolus, waiting to feel any stinging.

I can still recall one tumultuous night where my blood sugar levels were soaring into the 20s, and no amount of insulin would bring them down. Hours later when my meter was showing ketones, I finally ripped out my infusion site to discover a kinked cannula.

There were moments like these initially, where I was an emotional wreck. I just wanted to rip my pump out and throw it against the wall. There were a few low points where I seriously wondered whether insulin pumping was working for me. Thankfully, at the suggestion of some of my blog readers, I switched to an angled infusion set with a manual insertion, and the anxiety dissipated.

A well tuned basal and bolus regimen is the foundation to successfully managing type 1 diabetes. That was probably my biggest challenge in those initial months on an insulin pump.

Setting my basal, or background rates of insulin, involved conducting what is called a basal test. This involves fasting over a six hour window, and evaluating how well the rate of background insulin keeps me steady. This was an enormous task, particularly in the mornings where I needed more insulin to offset the extra glucose released by the liver.

It required a great deal of patience. There were days where I couldn’t do a basal test, because my numbers were higher than ideal. There were days where a basal test was cut short by a low blood sugar. There were days where the tweaks just didn’t seem to fix the problem. And there were days where I simply couldn’t go without my morning coffee! It took me a good two or three months until my basal rates were finally 100%.

Any healthcare professional will also tell you that you need to be able to count carbohydrates if you want to use an insulin pump. I’ve really surprised myself in that regard, because I was expecting that I would eventually slack off and go back to guessing. Yet today, I can’t imagine not counting carbohydrates. I continue to experiment with techniques such as timing of insulin delivery, and covering higher protein or higher fat meals. Smartphone apps like Calorie King are also a lifesaver for carbohydrate counts, as well as protein and fat.

I was also fortunate enough to also have access to the FreeStyle Libre Flash Glucose Monitoring System when I started out on my pump. For the most part, the Libre was a replacement for fingersticks. The Libre provided me with a glucose reading, an 8 hour history, and arrows indicating the direction in which my glucose levels were trending, every time I swiped the reader over the sensor on my upper arm.

For my needs, the Libre was perfect. I check my blood sugar frequently throughout the day, so the Libre fitted the bill nicely in adding some convenience to that. I liked that the hardware was minimal, and that it didn’t use up a lot of real estate on my body. Bells and whistles such as alarms and data sharing aren’t as important to me, especially if it pushes up the price of the product.

I guess where I have struggled the most is setting boundaries around Continuous Glucose data. I have found it easy to become obsessed with the data after wearing my Libre for too long. There have been times where my behaviour hasn’t been too healthy. I’ve found myself compulsively checking my levels while I’m sitting on the couch in the evenings watching television. The trend arrows are frustrating to see at times, and it’s hard to remind myself that they are only temporary. Against better judgement, I do tend to over react to the data, which sends me low far more often that I should be.

Late last year, I reached a point where I looked at my graphs and realised that I wasn’t using the Libre as effectively as I did in the beginning. I thought to myself, am I checking my blood sugar because I need to, or just for the sake of it? Since then, I have decided that the Libre is not something that I can wear all the time. I prefer to use it for the purposes of fine tuning basal or boluses, when I need a break, or when I plan on cruising my way through all the Christmas food. I need time away from the tech, in order to be able to use it most effectively.

Which brings me to good old fashioned fingersticks.

Traditional blood glucose monitoring forces me to think about whether I need to check my blood sugar, or whether I’m simply doing it because I can. I read the number, act on it, and move on. My head isn’t consumed by numbers so much, and my mood isn’t dependent on trend arrows. In fact, there have been periods where the numbers have been better than those on the Libre, simply because I’m not micro managing numbers.

I love how far blood glucose meters have come since I was diagnosed.

Today, meters have USB ports. I can simply plug my meter into the computer before an appointment, and upload the data from all of my devices to computer software such as Diasend. I don’t need to scratch my head every time I’m asked “what happened here,” because Diasend compiles data from my insulin pump, meters and Libre into one easy to read report.

When I was first diagnosed, blood glucose meters weren’t as flashy or stylish as they are today. They were boring. Today, meters have backlights for testing in the dark, colour screens, bolus calculators, alarms, smaller test strips, smaller samples of blood, stylish cases and cooler lancing devices. There are Mum and Dad businesses selling stickers and accessories to brighten up our diabetes devices. Diabetes can feel so monotonous at times, that these small features really do help pep me up in my daily management tasks.

There’s an old saying that goes something along the lines of “an insulin pump is only as smart as the person pushing the buttons.” I couldn’t agree with this statement more.

Over the past year, technology has been a lot of hard work. In fact, it’s been harder work than Multiple Daily Injections. I can honestly say that I am still learning new things about insulin pumping today. I am still learning new things about my diabetes today. Technology was an investment that I needed to put the hard work into, in order to reap the benefits. I needed to learn how to use my devices properly. I needed to take responsibility for the maintenance of these devices. I inevitably had to go through moments of burnout and failure.

Technology is not a solution for diabetes. Not everyone will be able to make this kind of an investment.

After seven years of borderline average diabetes management, I felt like I owed it to myself to give it a go and see if I could do better.

I didn’t see the results overnight. In my first three months on a pump, my hba1c actually went up as I adjusted to using these devices. But I continued to put the hard work in, and I eventually saw the benefits.

Today, I feel more confident with my diabetes management than I ever have. My numbers don’t go as high as they once did. The lows don’t happen as often as they once did. I can sleep through the night with steady, in range blood sugar levels – something I once thought was impossible. I was able to get my hba1c to where I wanted it to be. For the first time in my life, I’m proud of that number, because I know that it’s not riddled with lows and highs. And I’ve been able to maintain that number ever since.

While the technology has certainly improved the quality of my life with type 1 diabetes, the hard work I put into these devices has helped me just as much.

Pump-less in December

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I was staring at the infusion site on my stomach that needed to be changed on Friday night, and all I could think to myself was I really don’t want to do this. 

I thought about the stressful week I had just had. I thought about all of the running around I’ve been doing lately, and the hypos that accompanied the running around. Spontaneous activity is so friggin hard to plan for. How can I possibly guess when I’m going to get the urge to vacuum my bedroom floor, fiddle around with the Christmas lights that have fallen, or water the garden – and set a temporary basal rate an hour in advance to stop me from going low? This was hardly an issue on Multiple Daily Injections.

It was 37 degrees on Friday, and the pump just added to the hot weather discomfort. That lump in my pocket was a cozy comfort during the Winter, but now it just annoys me. Every time I sprawl out on the couch, or lay down in bed, its there. Every time I have to stop and tuck the excess pump line back into the waistband of my shorts, only to have it emerge again soon after. Every time it weighs down my shorts with all of the other crap I carry around when I leave the house, and I’m left pulling up my pants every five minutes.

I’ve definitely been cruising a little more than I would normally allow myself. Hello, December. I had two iced coffees last week. At 69g of carbs a pop, it’s not something I can usually justify consuming, especially being in liquid form. I’ve been treating myself more often than I would usually allow, and carb considerations cross my mind less often than they usually do. Maybe a break would give me time to refocus?

I love my insulin pump. I love the added precision, and extra flexibility that it allows. Having an insulin pump has really motivated me to more actively manage my blood sugar levels and count my carbs. In seven months, I don’t think I’ve ever seriously considered abandoning my insulin pump.

But I was already daydreaming of being free from my pump. I was excited by the idea of shaking things up and doing something different, in the same, refreshing way that going Libre-less was.

I have learned so much about my insulin dose requirements since starting out on a pump, and I couldn’t help but wonder if I could apply this logic and newfound diligence into Multiple Daily Injections a second time around.

With Christmas just around the corner, I doubt that this pump break will last very long. But for a few days at least, I will savour the freedom of not having to feel for a flying pump every time I get up off the couch, and the extra space in my pockets.