Diabetes Musings

Seven.

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Seven years.

I can feel the goosebumps on my neck as I type those two words out.

In some ways, it feels like only yesterday that I didn’t know a world without type 1 diabetes.

In other ways, it feels like a lifetime.

Type 1 diabetes is undoubtedly the biggest challenge life has thrown my way.

Trying to mimic a healthy, working pancreas is no easy feat. Trying to cover carbohydrates with insulin. Trying to keep my blood sugar levels between 4 and 8 mmol/L as often as possible. Trying to make choices that will help me to live a long and healthy life. All while trying to live some sort of a life at the same time.

There’s a lot of trying, if you hadn’t guessed that much already.

As much as I’d like to call myself a superhero and say that diabetes doesn’t get the better of me, it does. When you choose to give something a go, you open yourself up to the possibility of failure. When you choose to open a door, you run the risk of exposing all of your flaws.

Diabetes is demanding. It requires constant attention. It drains me, mentally and emotionally. Every single decision I make through the day has an impact on my diabetes. I feel waves of guilt and emotion course through my veins, from a decision as stupid as eating a piece of chocolate. Diabetes doesn’t stop demanding of me, even at the lowest of times where all I want to do is shut the door and throw in the towel. There are still times where I do feel different, limited or alone because of this stupid condition I was dealt with.

But when you give something a go, you also open yourself up to the possibility of flying.

Starting on insulin pump therapy last May was a huge leap, that ultimately helped me to refocus on my diabetes management and reduce the highs and lows. Having access to continuous glucose data through the FreeStyle Libre flash monitor overwhelmed me at first, but I’ve since learned how to best utilise the data from it. Starting a blog was a little nerve wracking at first, but it’s since made me more passionate and open about diabetes, and led me to some amazing advocacy opportunities.

As a wise person once said, it’s better to try and fail, than to not try at all.

As I celebrate my seventh diaversary today, those are the words I am choosing to live by.

Because there sure is life after a diabetes diagnosis.

“Can I Tempt You With a Sugar Fix?”

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Can I tempt you with a sugar fix, Frank?

I could see snakes, chewies, sour worms, chocolates and other party mix lollies in the bowl my boss was holding in front of me, as she asked ever so nicely.

No thanks, I’m fine.

Oh!  She replied with a small gasp, presumably recalling the fact that I have diabetes. Sorry!

There it was.

That presumption that just because I have diabetes, I couldn’t dip my hand into that jar of lollies. Even though I was certain I’d had this conversation before, and hundreds of others like it.

I felt cornered. Defined. I hated seeing someone else make presumptions about what was best for me. And I felt this rising urge to explain.

It’s not that I can’t have them, I just don’t want any at the moment.

The truth is, I’m not a big fan of lollies. Sure, I like them. Sure, I’ve been known to eat them from time to time. But they’re not my absolute favourite sugar laden treat food in the world.

Sure, I could of grabbed a piece of chocolate. But I’d just had my morning tea, and no longer felt particularly hungry. I was also physically working, and wasn’t keen to screw up a steady blood sugar with something spontaneous in this moment. I’ve also been eating far too much junk lately, to the point where I’ve even been treating hypos with Easter eggs. So I am definitely making a conscious effort to be more prepared with my eating behaviours and scale back on the chocolate.

Just like any other person out there in the world, I will politely turn down food from time to time.

All I ask is that you don’t assume that my diabetes is the reason.

That Damn Clip

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What’s the worst thing about wearing an insulin pump?

It’s not the feeling of attachment all the time.

It’s not the constant attention required towards infusion sites, batteries, pump lines and insulin cartridges.

I’m not even bothered that the pump is still not a freaking cure for diabetes.

What bothers me the most about my pump is that damn clip.


It wobbles. All. The. Bloody. Time.

Despite my many repeated attempts to tighten that tiny screw that holds both parts of the clip together, I’m lucky if I’m rewarded with a week free from wobbliness.

It doesn’t stay clipped to my clothes properly unless I actually thread the fabric inbetween those two bits of plastic.

It’s a bloody pain to pull apart from my clothes when I want to have a glance at it. Which, let me tell you, is quite a lot. Not to mention having to thread it back on again when I’m finished.

My affection for this delightful clip escalated yesterday when the two parts of my clip, held together by a screw, snapped apart.

When I called the Animas helpline to see about getting it replaced, I learned that this clip is only covered under warranty for six months. Yet the $9,000 pump is covered for four years, despite it already looking quite tired after one.

I can’t say I’m keen to waste another 30 or more dollars on a new clip that I don’t like, and which I know won’t last.

I’d love to buy one of those awesome clips on eBay that I could simply stick to the back of the pump. But of course then I’d be blocking the little infrared patch, which I need access to when I upload my pump data to diasend.

So last night, I went out to the shed and attempted a little DIY repair on my pump clip.

I’ve put the clip back together with a putty called Knead It, that dries like cement.

Cement will hold better than screws, right?

Giving Context to a Hba1c Result

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I really want to get my hba1c done. I have a referral to pathology sitting in my diabetes file at home, to tide me over until my next endo appointment. But I know it’s still a bit too soon. 

I have a pretty good idea of where I’ll be sitting. Yet my deepest, darkest desires are still chasing sight of a number. A scorecard. That stamp of validation, that will tell me how well or not-so-well I have been doing with my diabetes over the past couple of months.

It’s silly, really.

A hba1c is just a number. It’s only one small element in the scope of managing diabetes. In fact, it’s not even the most accurate measure of how I am managing. Although it’s supposed to be a 3 month ‘average,’ around 50% of that result is drawn from the past four weeks worth of blood sugar levels. If there are big variances in my levels, then the result is likely to be less accurate. I was even told that clinic results can vary by as much as 0.5% from pathology!

With holidays and Easter in the rearview mirror, I definitely felt that it was time to sit down and review my data. So over the weekend, I gathered all of my diabetes devices and uploaded their data to Diasend.

Diasend is a brilliant tool for reviewing my diabetes data at home. It’s a web-based software platform, where I can upload the data from my insulin pump, blood glucose meters and FreeStyle Libre. It generates the data from all these devices into one, easy to read report. So for instance, I can see what my reading was at 12pm, the carbs I ate with lunch, the insulin dose I gave for lunch, and the basal rate I had running at the time.

When I review my data, there are five things I like to look at besides from my hba1c, which give me an indication of how I am doing with my d-management.

Obviously, the first thing I want to know is my average blood sugar level over the past 2-4 weeks. I then use this handy tool to convert my average blood sugar level to an estimated hba1c.

The second thing I think about is how often I am checking my blood sugar. I’ve always been in a pretty good habit of checking my levels before and after meals, and before and after significant activity. I also try to check once during the night, if I don’t sleep over my 1am alarm! Checking my blood sugar more than four times a day means that I’m getting a bigger picture of where my levels are sitting through the day, and that my average blood sugar level is accurate.

The third thing I look at is the Standard Deviation in my blood glucose readings. In other words, how high or how low are my blood sugar levels going? How often are these kinds of swings happening? How big is the variability between these kinds of swings? Before I started using an insulin pump and more actively managing my levels, there were big swings. For several years, I was able to scrape together half decent a1c results, but I always knew that they weren’t accurate because of the large deviation. Ideally, my standard deviation should be less than 3 for the hba1c result to be a reliable one.

My fourth consideration is to any significant events that might have influenced my levels lately. I know that I’ve been travelling and eating a lot over Easter. The increased physical activity has produced a few more lows, while the excess of food has produced a few stubborn highs. There’s usually a good reason for everything, and I simply feel so much better about a disappointing couple of days when it can be explained.

Finally, I try to focus on the progress I’ve made since last time. Whether it’s a lower standard deviation, a problem area I’ve been able to fix, or whether I’m simply feeling more comfortable with my management since last time. I constantly remind myself of these victories, to motivate myself going forward.

A hba1c result is an important number. But there is so much more context that needs to be given due consideration, before we begin popping the champagne bottle, or smashing it to pieces.