My Diabetes Inklings

The Guilt of Privilege

I have access to subsidised (aka free) CGM and I feel guilty as heck for it. As my diabetes educator signed the forms, the wave of emotions hit me. I was excited, happy, relieved, angry and frustrated. It felt incredibly unfair that I was accessing CGM without cost while others were scraping every dollar to afford these.

CGM is precious. I remember trialing it when I started on my first insulin pump about six years ago now. It was life changing to be able to see what happened in between the finger pricks, to get alerts and see glucose level trends. I was armed with so much data that exercise didn’t seem so daunting anymore and the anxiety around hypos and highs were greatly reduced as well.

While the technology is awesome, the price wasn’t. Currently a Dexcom G5 transmitter is about $500 for three months, each sensor costs about $80 and lasts seven days. The Freestyle Libre sensor is $92.50 plus postage (don’t even get me started on having to pay for postage…). I’m not sure how much Medtronic sensors cost but I’d assume it’s comparable and the last time I checked, they were slightly more affordable on a subscription plan.

Of course, the diabetes community has come up with workarounds to get more bang for your buck with rebatteried CGM transmitters and extending sensors for as long as we can. For us, the benefit of having that continuous data outweighs the risk of infection that comes with extending the sensor.

While we make do with what we’ve got, many people are working in the background to to get CGM and Flash subsidy for everyone with type 1 diabetes (and hopefully for other people with diabetes who will benefit from it too down the track). We’ve come a long way since CGM first came to Australia and there’s still a long way to go.

Thank you to all the organisations and people behind the scenes who have made it possible for me to access subsidised CGM. I promise to pay it forward by donating expired transmitters to be rebatteried and doing what I can to keep advocating to achieve access for people with diabetes who will benefit from it. Out of pure habit I’m still extending my sensors for as long as possible (although the best I’ve done so far is just under three weeks). It’s the least I can do to ease this guilt and to make the most of what I am lucky to have.

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My Diabetes Inklings

Speak Up, Be Heard

Recently I found out that a high school friend passed away from cancer. His diagnosis took over six months as the first doctor he saw said it was nothing. His mum persuaded him to get a second opinion. He eventually went but argued that “they show no interest in me”. Twenty-four hours later, he was diagnosed with lung cancer.

Prior to my diabetes diagnosis, I had a sinus infection that went on for six months and it worried me. I had never been this sick for so long and I wanted to get answers. I consider myself incredibly lucky to have had a GP who was patient with me and listened. Neither one of us expected a diabetes diagnosis after further tests were run.

These experiences highlight the unpredictability of our health. Neither my friend nor myself fitted the stereotypical profile for our diagnosed conditions. We tend to go into the doctors expected to be told “it’s nothing” or “it’ll go away”. But sometimes that’s not enough. As patients, we need to do better at sticking to our guns when we feel that something is not right. And as healthcare professionals, we need to do better at making our patients feel heard.

We are our own experts when it comes to our body. If something doesn’t feel right, don’t brush it off. That’s not to say we should become hypochondriacs. But if something is concerning you or impacting your day to day life, get it checked out. If someone actually says “hey, you should get that checked out”, listen to them!

It’s better to run the tests and receive the all clear than to let the issue bubble along until it’s too late. And if you don’t feel listened to in the first instance, get a second opinion. Early detection or diagnosis often leads to more treatment or management options. Make sure that your doctor captures your concerns during your visit as you never know when that piece of the puzzle might fall in to place. 

My endo dictates his clinical notes aloud while I’m in the room to ensure it’s accurate and that I know what is being sent to other members in my diabetes care team. It can be a bit awkward to hear but I respect and appreciate the honesty and transparency this process brings. 

Now I have the habit of seeing what health professionals write in their clinical notes and I never hesitate to correct them if needed. Medical notes are legal documents, which is why it is crucial that what is documented is accurate. However, this does comes with confidence. Prior to my diabetes diagnosis, I would’ve never dared to do this nor would I know what to look out for. It has taken me years and plenty of bad experiences to get to this point.

Being an active participant in my own healthcare has become another one of those life skills you pick up living with chronic condition over time. Unfortunately, time is a luxury not everyone has. Because now we will never know, had my friend gotten that x-ray earlier, would he still be alive now, about to celebrate his 30th birthday?

My Diabetes Inklings

My Diabetes, My Life

Accepting a diabetes diagnosis is difficult. I often hear people saying that they just ‘go through the motions’. They’ll take their medication as prescribed and be done with it. Some won’t even check their blood sugars. I mean, I totally understand. Life goes on as usual, and no one wants to think about living with a chronic condition. I think this is the difference between passively living with diabetes and owning your diabetes while taking charge of your life. Continue reading “My Diabetes, My Life”