An Exclusive Path to Improved A1C Outcomes?

I was recently e-mailing a blog reader who was investigating a national diabetes management system. As I began to respond to the e-mail, I found myself feeling compelled to add more and more perspective to the question being asked of me.

Diasend is the data management system I use with the team at my diabetes clinic. It allows me to upload the data from all of my diabetes devices – my blood glucose meters, my FreeStyle Libre and my Insulin Pump. I can manage my diabetes data in one place. For instance, I can look at my blood glucose level at 10pm last night, the basal rate of insulin being delivered at the time, and my most recent carb intake and bolus insulin dose.

Even better is the fact that I can choose to share this data with the team at my diabetes clinic. Prior to an appointment with my diabetes educator, I am able to upload all of my devices to Diasend. Gwen can better prepare for our education session, and I don’t need to wing my way through her questions around blank spaces in my logbook with umms and ahhs. It does force me to be more transparent around my results and the context surrounding particular occurrences, but I do have a great deal of trust in most of my team.

The e-mail went on to suggest that a management system such as this one on a larger scale could result in improved A1C outcomes in patients. In some instances, I could envisage this being true. However, I felt compelled to explain that an A1C result is not necessarily the sole indicator of how well an individual or healthcare team is managing diabetes.

How many times have I gone to test my blood glucose, expecting the moon and the stars, only to come back with something completely unexpected? Then I’ve had stellar A1C results in the past that have been praised, when deep down I know that I’ve been having far too many hypos.

There are so many issues surrounding diabetes, that many of us deal with concurrently. Mental health and emotional health, for one. I have a few good connections in the DOC who deal with more than one autoimmune condition, such as rheumatoid arthritis or coeliac disease. Then there’s all the regular checkups we have to maintain. The time and the financial burden we must invest into staying healthy.

The quality of my healthcare team makes all the difference, too. Some healthcare professionals can barely scrape the surface of what’s written in my chart. Others see the whole person behind the condition. They talk to me. They gather the full picture of what’s going on. They are empathetic. They give me their time, and their undivided attention. They go above and beyond their duty to help me succeed.

However on top of all of this, we still do our best to live happy and fulfilling lives. That, in itself, is absolutely amazing.

In my opinion, there is no exclusive path to improved A1C outcomes. But dealing with each of the bricks that cement the final result together definitely helps.

A Rough Patch

I’ve been going through a bit of a rough patch with my diabetes lately.

I’ve been using an insulin pump for six weeks now. I am loving it, and I do genuinely feel a greater sense of control compared to what I did on Multiple Daily Injections. I feel that I am putting far more effort into my diabetes than I did towards the end of my reign on injections, which is a good thing. I feel motivated to put that effort in, because that effort does produce both results and less stress.

Yet at the same time, the insulin pump has been one of the greatest challenges I have faced in the course of managing my diabetes. There are an endless number of variables I can program for with the pump. Fine tuning the pump settings has taken a great deal of time and incredible patience. With a job that entails physical activity, this workload is essentially doubled. As I’ve somewhat come round full circle in fine tuning my pump settings, I am finding that my basal insulin requirements need to be lowered further. I’m needing to go round the clock again with basal testing (urgh).

The occlusion I wrote about yesterday was the last straw. It set off a rollercoaster of emotions. Sadness, failure, anger and frustration. I’ve been snappy. I’ve been quiet. I felt very tempted to rip out the pump and take a break last weekend. The words fucking diabetes have often been on my breath. I’ve even wished my diabetes away, something I can honestly say rarely happens. Opting out of renovation work last weekend was a tough, but necessary call so that I could have some time alone.

My diabetes educator recently reminded me that sometimes we need to take a step back from diabetes. Not literally, of course. I guess more like trying to put it to the back of my mind, and bringing some of the non diabetes stuff to the forefront.

For me, a big part of dealing with this burnout has been taking a step away from social media. I’ve really just needed a break from reading and engaging myself in the the constant conversations about diabetes online. I’ve pulled out a book, and started reading again. I even finished it. (If you know me, you will know how much of an achievement this is). I made dinner on Thursday night. I’ve focussed my attention finding some different stuff to snack on. I’ve also been ducking out into the Winter sun when it makes an appearance, too.

At the moment I’m just trying to look at my diabetes day by day, and trying not to set unrealistic expectations in fine tuning my insulin pump. I’ve put a plan in place to move past that occlusion. I’m giving the centre of my stomach an indefinite break from insulin pump sites. I visited my doctor last week, and am subsequently applying bruise cream to the centre of my stomach to hopefully heal some of that scar tissue. I’m placing my pump sites on the outer edges of my stomach, and drawing dots in permanent marker to track my rotations. I’m also checking my pump sites when I get dressed each day for signs of bruising and bleeding.

This week, the bruises are finally starting to fade. And with it, I feel like some of that burnout cloud is beginning to clear, too.

The Occlusion That Triggered a Burnout

Two weeks ago, I made my first venture over to the right side of my stomach. I had worked my way across the left side of my stomach during my first month on the insulin pump. Infusion sites only need to be changed every three days compared to injections, and I was pretty damn pleased at the thought that the right side of my stomach had gotten a break for a whole month. So I was pretty surprised to discover bruising underneath that very infusion site two days later in the shower.

I knew that I had to rip it out straight away. As I ripped it out, it began to bleed. As I watched the bleeding and nasty purple bruising on my stomach, I really couldn’t believe it. I hadn’t touched that side of my stomach for a whole month, and I really had no explanation for it. I was pissed off, and wondered to myself where I had gone wrong.

As I went about replacing the infusion site, I wasted two insertion devices in the process. The first site came a little unstuck from my stomach as I pulled the insertion device away from my body. Not wanting to risk a failed site, I pulled it away from my body completely and started over. The second one was also a failure. The details are a little hazy, but I remember seeing a bent needle as I pulled the insertion device away from the site. By the time the third one was in, I had wasted close to an hour of my afternoon dealing with it. In addition to being angry, I was now very much emotional as well.

Yet, it was only about to get worse.

I decided it was as good a night as ever to turn down one of my favourite dinners (stuffed eggplants) in favour of testing my evening basal rates. Ironically, I was also moderating an OzDOC chat that night on diabetes and emotional health.

My levels were in range prior to kicking off the chat. I was confident my basal rate was close enough, although I did suspect that my levels might drop a little that night. So it was to my great surprise to find that towards the end of the hour, my BGLs had hit 10mmol with an upward trend arrow. I don’t know what possessed me to check my stomach, but I did. And I discovered my very first occlusion in my insulin pump line.

This one didn’t bleed a little. It bled and bled and bled. Words cannot describe how devastated I felt that night as I lay there on the couch, applying tissues on my stomach and waiting for the bleeding to subside. The two nasty purple bruises that were left on my stomach in the days that followed were a lasting reminder of my diabetes and of how long I’d had it. I had never felt so failed by my body in my life.

I stood for at least five minutes in front of my wardrobe, deliberating whether or not to replace the site. After the day which I’d had, I really didn’t feel like dealing with another site change. After the events that had transpired, I wouldn’t even be able to go to sleep with confidence that the site would stay put. I was seriously considering injecting Lantus and taking a break from the pump for a day or so.

I eventually gathered the courage to replace the site, opting for the outer edges of my stomach. I’ve since decided that the centre circle of my stomach needs an indefinite break before it’s ready to handle three day long infusion sites. I’ve visited my doctor, and I’m applying bruise cream to my stomach in the hopes that it will heal some of that stomach tissue.

I now make sure to look at my infusion sites every day. In the shower, when I’m getting dressed and before bed. I always make sure that the skin underneath the site looks clean and free from dark marks and bruising, because I want to minimise the chances of this ever happening again.

It was the occlusion that triggered a really rough period of diabetes burnout over this past week and a bit.

In and Around the DOC of Late

I’m going through a bit of a rough patch with my diabetes at the moment. I haven’t felt like writing too specifically about pump or blood glucose tethering issues, and I’m taking a bit of a back seat on social media. But that’s not to say that there hasn’t been a lot going on in the good ol’ DOC.

One thing that I am reminded of during this rough patch, is that I have excellent tools available to me in order to manage. I’m wearing a Libre sensor on my arm, which gives me the convenience of scanning as often as I need to. I have a $9,000 insulin pump attached to me, which allows me to set temporary basal rates to settle stubborn glucose levels, or conveniently bolus from the comfort of the couch. I also have plenty of spare insulin, glucose meters, skittles and test strips in reserve.

Not everyone in the world does.

T1International is currently running an appeal to provide insulin, syringes and glucose monitoring supplies to an estimated 2,000 Syrians who are in dire need. Just under $20 Australian dollars will provide a month’s supply of insulin, which I easily spent at Woolies yesterday alone. You can read more about the appeal here, and make a donation here.

If you’ve read a diabetes blog recently, there’s a good chance that you’ll see a comment from Rick at RADiabetes. Rick invests a lot of his time each week into reading the mass of diabetes blogs in our community, and curating the blog page at TuDiabetes which you should definitely check out here.

There’s a new diabetes forum/app from Beyond Type 1 for people to connect, share and inspire each other to not only live, but thrive with type 1 diabetes. I must admit I’m not too keen on another password to remember, but I am definitely feeling tempted to sign up after a peek at some of the forum activity from new and familiar faces. Check it out here!

There’s a new book which aims to help children better understand diabetes self care and the use of equipment. Diabetes veteran Yerachmiel Altman from New York began photographing stuffed animals taking shots, doing finger stick tests and using an insulin pump as a way to help a family dealing with a newly diagnosed six year old son. You can buy the book, I Can Help Take Care of Me here.

Helpline Live is a free service offered by the team of experts at Diabetes Queensland. If you’re a part of the Twitterverse, you can tweet a question under the hashtag #HelplineLive, and the team from Diabetes Queensland will get back to you with an answer. They’re live every Tuesday morning from 9-10am, but will answer your questions outside of those hours, too!

You might have heard of Jayne Lehmann before, but she is relatively new to me. Jayne is a self employed diabetes educator from South Australia who is actively connecting and learning from people with diabetes on social media. Her latest blog post explores the implications of the upcoming NDSS changes, which you can read here, and be sure to follow her on Twitter here.

Yesterday was officially the shortest day of the year, meaning we are well and truly in the depths of Winter. I’m reminded of this freezing yet glorious afternoon at Lake Burley Griffin in Canberra last July. Take me back!


Hope you’re keeping warm, and that your Wednesday is filled with stable glucose levels.

No Clinical Need, No CGM For Me

Last week, the opposition pledged $80 million towards subsidising Continuous Glucose Monitoring technology if elected at the upcoming federal election in Australia. The pledge would subsidise Continuous Glucose Monitoring technology for people under the age of 21, in addition to those with a clinical need such as pregnancy or hypo unawareness.

It’s great to see a commitment from both sides, and hopefully these announcements will pave the way to access for the rest of us in the future. I am happy for those who may see a benefit should either successful political party honour their pledge. I congratulate those who have lobbied tirelessly for several years, even though it took a federal election for their efforts to finally be recognised by both major political parties.

The rest of this post, however, is completely selfish.

I am disappointed that I will miss out. Even though I’m not particularly interested in using a CGM, I still feel very much left out.

The political motives behind both of these announcements irk me. People have been lobbying tirelessly for several years to get Continuous Glucose Monitoring technology subsidised, and yet it takes a federal election for their efforts to finally be recognised. I’ve watched heartfelt current affairs segments, news pieces, and read social media posts over the last two years, with non committal responses all the while. Yet along comes a federal election, and suddenly both parties really care about diabetes.

So, I don’t have a “clinical need,” and will not qualify for a CGM. What’s to stop me from inflicting hypos on myself, or badly managing my diabetes in order to get one? Then there’s the issue of those young adults who will be able to access a CGM now, and then lose it as soon as they turn 21. Doesn’t seem very fair, does it?

I’m just a young adult trying to make my way in a very expensive world. Keeping myself healthy already takes up a large amount of my time, my energy and my income. I simply cannot afford to pay for what is essentially a luxury product. Just because I don’t have a “clinical need,” it doesn’t mean that this technology wouldn’t change the quality of my life.

As a person with a chronic illness, I am always reminded in the media of the burden I place on the healthcare system. Surely an investment in my health would be a step in the right direction. Surely having the option of using this technology would only motivate me further to manage my diabetes to the best of my ability.

Diabetes technology should be available for all who wish to use it. Period.

Sometimes I think that it looks better for politicians when they are photographed helping children or more visibly sick people, rather than ordinary ones.

But hey, that’s politics, I suppose.