The Cost of a Chronic Illness

10 Comments


Its day 2 of the eighth annual Diabetes Blog Week. The idea is that bloggers sign up to write about a set topic each day for a week, and readers can get a variety of different perspectives on the one topic. Here is today’s prompt:

Insulin and other diabetes medications and supplies can be costly.  Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage.  So today, let’s discuss how cost impacts our diabetes care.  Do you have advice to share?  For those outside the US, is cost a concern?  Are there other factors such as accessibility or education that cause barriers to your diabetes care?

The cost of having diabetes sure does add up. Over the years, I’ve definitely felt envious of my peers who get to spend their money on having a good time and living like there’s no tomorrow.

But if I have to have diabetes, then there’s no place I’d rather have it than in Australia. My own diabetes care has been relatively accessible and affordable. I am not judged based on my income or socio-economic status. I have never struggled to make ends meet. I have a stable job and a supportive family around me. However, I do expect that there are still many in Australia who would still find it hard to make ends meet.

Insulin is heavily subsidised through Medicare and the Pharmaceutical Benefits Scheme, costing me approximately $35 for 5 boxes of Novorapid insulin.

Test strips, needles and insulin pump consumables are heavily subsidised through the National Diabetes Services Scheme, which is an initiative of the Australian government. I would pay around $16 for a box of 100 test strips and a box of 10 infusion sets for my insulin pump. Needles are free.

My diabetes healthcare is completely free through the diabetes clinic at my public hospital. I have access to a diabetes educator, dietitian and endocrinologist, the latter of whom refers me to any other healthcare professional in the hospital that my diabetes desires.

I’m also fortunate enough to be able to afford a private health insurance policy, which costs me approximately a week’s wage. This covers the costs of any hospital care, and I get benefits on things like dental and optical services. As someone with diabetes, a private health insurance policy will also cover the cost of an insulin pump – something I would definitely not have access to without insurance.

I feel that the biggest barrier to my diabetes care would be the quality of care I have received over the years. Although the public system is free, it doesn’t mean that it’s necessarily great. Busy public hospitals just didn’t have the time for me, especially when there were young children and families who understandably needed it more. I was pushed towards self management after about a year, not knowing any better. In retrospect, not having the support of a diabetes educator from years 2-5 were really detrimental to me. I was unmotivated. I felt isolated, and my diabetes felt unmanageable.

When I jumped online and found the Diabetes Online Community in 2015, I started feeling less “conscious” of my diabetes. I developed an interest in it. I eventually got back in touch with my diabetes team and started on insulin pump therapy, which quite honestly changed my life. I found the motivation to learn and more actively manage my diabetes. Last year I began seeing a private diabetes educator, who now gives me all of the time and support I need. Today, I call myself an advocate, dedicating my spare time towards something I am really passionate about.

I wasn’t always comfortable with my condition. I wasn’t always motivated to self manage, and speak up for what I wanted. I wish a healthcare professional encouraged me to jump online. I wish a healthcare professional had suggested an insulin pump to me. I wish a healthcare professional had encouraged me to seek out peer support. I feel like there are a lot of people out there who are in that place where I once was, just waiting for the front porch light to switch on.

To read other responses to today’s prompt, click here.

Travelling Prepared With Diabetes

15 Comments

Today kicks off the eighth annual Diabetes Blog Week. The idea is that bloggers sign up to write about a set topic each day for a week, and readers can get a variety of different perspectives on the one topic. Here is today’s prompt:

Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random.  What are your best tips for being prepared when the unexpected happens? Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected?

When I was first diagnosed, I had this attitude that diabetes wouldn’t weigh me down. Quite literally. I wanted to prove that diabetes hadn’t changed me. I wanted to prove that I didn’t need to carry a meter, insulin or jellybeans with me as a just-in-case. It felt weak. It felt like giving into my condition.

So if anyone knows a thing or two about how to travel un-prepared with diabetes, it’s me.

I once boarded a ferry to Rottnest Island, only to discover that I had bugger all insulin left in my pen  cartridge. Instead of trying to find a Pharmacy, I decided to wing it and somehow lived to tell the tale.

i remember going hypo on a Friday morning at work, with nothing to eat other than an overripe banana. Yuck.

I discovered a failed infusion site while I was away from home painting a house one Saturday afternoon, and had to drive home in the pouring rain to change it.

When my insulin ran out halfway through a lunchtime dose, I winged it again, probably running high until hometime.

When I suspected spoiled insulin earlier this year, I had to call my Dad to run some up to me work.

When it comes to travelling prepared with diabetes, my biggest dilemma is deciding whether I actually need to carry those supplies with me, or whether I am simply preparing for the zombie apocalypse.

I like to travel prepared. But I also like to travel as lightly as possible. Us guys don’t exactly have the luxury of handbags…

I’ll often stand in front of my desk before heading out, debating over whether I need to bring this with me. I’ll tuck things in my pockets. Then I’ll take things out because I feel weighted down and over prepared.

I’ve tried the whole keeping supplies stashed in different places. You know, desk drawers, lockers, in the car, in my satchel. In theory, it sounds like a great idea. The only problem is you begin depleting those supplies. And you have to remember to keep topping them up. Not ideal, either.

I’ve recently invested in a small, tube shaped pencil case. I keep all the essentials in there. A meter for travel, spare supplies in case of a pump failure, insulin, and hypo food. Those are my essentials. Nothing more, nothing less. I grab that case every time I leave the house. There’s no more dillemas over what to bring, or what not to bring. It’s not big, bulky or akward to carry. It can even stay in the car if it’s going to annoy me while I’m out.

There’s no easy answer to travelling prepared with diabetes.

You learn from experience.

And you do get better at it over time.

To check out other responses to today’s prompt, click here.

Seven.

2 Comments

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?”

Leave a Comment

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

3 Comments

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?