Blood Sugar Levels

A CGM, and a Second Option In My Diabetes Drawer

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Two weeks ago, I attended an information evening on insulin pumps. And to a lesser degree, Continuous Glucose Monitoring. For the former, I am still deliberating. I am still plagued by two lines of thought. Will an insulin pump actually help me, and give me more ease over my diabetes management? Or will it just be the same old diabetes management but with a fancy device? And will the learning curve, and frustrations be too much to handle? I don’t know. That’s a question for my diabetes educator next week.

For the latter, however, I do have a clearer train of thought. I’ve been writing about the issue here a lot lately, and advocating for more affordable access here in Australia. And I have come to (somewhat of) a conclusion, based on my own diabetes, and my own individual circumstances.

I do not use a Continuous Glucose Monitor. For me personally, it’s estimated cost of $5,000 per year is a very large chunk of my annual salary at a time where I am looking towards my future. I would rarely spend that sort of money on myself, and I can think of a thousand other things that I would rather put that money towards.

I don’t think I could handle having access to results 24/7. I actually forced myself to stop testing so often earlier this year, because it was doing more harm to me than good. There was a time where I couldn’t handle seeing imperfect numbers. I was prematurely correcting post meal highs, only to end up hypo two hours later. Glucose numbers are always going to naturally rise after a meal. But they are going to naturally come back down as well. Sometimes I think that mentally, it’s better not to see those numbers inbetween. Out of sight, out of mind, right?

Nor do I like the idea of potentially having two devices attached to me, at a time where I am currently considering an insulin pump. I like to keep my pockets as light as possible at all times. I cannot stand jingling pockets full of crap weighing me down while I’m running around at work! Thinking about that device being attached to me all the time feels like a physical reminder of my condition. And at the moment, that feels a little demoralising to me.

Bear in mind that I have never lacked the motivation to check my blood glucose levels. I am quite comfortable checking my levels. I will sometimes test as often as 10 times a day, because it gives me a certain level of comfort. It gives me a sense of certainty, control and grounding over my condition. Without my meter I would be completely lost.

I realise that I have lived the bulk of my life with diabetes at a mature age. An age where I relish having independent control, and management over my condition. I am also still a relatively “young” diabetic, who is yet to go through a serious burnout. Perhaps my attitude towards Continuous Glucose Monitoring will change with time.

That being said, if I did have easier, cheaper access to a Continuous Glucose Monitoring device tomorrow, I would certainly take it. I would trial it. It would certainly be handy to have on me when I go on holiday, when I am frustrated, and when I just want to have a break from diabetes. It would be a useful learning tool to have, and a shield against the unpredicatability of diabetes and glucose levels.

And I am certain that every other Australian would accept glucose monitoring technology tomorrow if it were more affordable, and accessible. Either as a regular management tool, or as a second option. If you would like to see Continuous Glucose Monitoring technology subsidised by the government, I urge you (again) to write to your local Member of Parliament, and the Minister for Health, Susan Ley.

I dream of one day seeing my own Continuous Glucose Monitoring device when I open my diabetes drawer. Beside my hoard of test strips, needles and insulin pens. Sitting there patiently, as a nice second option for me to take advantage of whenever I feel like doing so.

There’s No Such Thing As “High Use”

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I poured my heart into the column I wrote for Insulin Nation last week, which you can read here. I questioned why I am made to feel guilty for using more test strips than what is subsidised through our National Diabetes Services Scheme (NDSS) here in Australia. I knew it was a topic that I felt strongly about. What I didn’t expect, however, was the overwhelming response from other people who felt exactly the same way that I did. Individuals, parents, children and people commenting from the other side of the world.

Over on Twitter on Saturday morning, a tweet from my #OzDOC friends Kate and Melinda at Twice Diabetes caught my attention. In response to my column, they suggested to a concerned Aussie d-parent that they could apply for a “high use exemption” from the NDSS limit with a doctor’s sign off. Another d-parent joined in the chatter, telling us that she had a letter from a paediatrician outlining the necessity for “high use” testing.

Look, that’s great. I am really pleased to hear that these individuals were able to access their supplies in their time of need. But it’s not good enough. Why should these individuals have to go and justify the need for these supplies? The very supplies that are keeping them, or their children, alive and healthy. By putting people into boxes such as “high use,” we are only further demoralising them. More than likely, they will go to their doctor. They will face a string of questions and concerns over whether they are managing their diabetes well enough. They will face judgement. And more than likely, they will feel inadequate.

In my opinion, there is no such thing as “high use” where Blood Glucose Monitoring is concerned. In my opinion, regular Blood Glucose Monitoring is in everyone’s best interests. It gives me a sense of control and peace of mind over my diabetes. It keeps me safe and healthy as I carry out my daily activities such as work, exercise and leisure. The very activities that can have implications on others if not monitored adequately.

I have gone through burnouts from diabetes. I have gone through periods where I have wanted to give up, and periods where I have lost the will to monitor my blood sugar levels. And during those tough times, the last thing I need is to be encouraged to test less.

I don’t want to place all of the blame on Diabetes Australia or the NDSS. I am really grateful to live in a country where we are blessed with such a good healthcare system. I also blame the meter companies who over inflate the prices, and make a profit off of our disease. But that’s another blog post altogether.

Personal thanks to Craig at Insulin Nation for your support of this story all the way from the US, and for pushing it to Diabetes Australia and the NDSS on social media outside of your work hours. I was also extremely pleased to see that I had a small victory. The NDSS agreed that this quote on their website did indeed make individuals like myself feel guilty:

“There are limits to the number of products you can purchase on the NDSS. If you reach the limit, we will contact you to give you information to help you manage your diabetes.”

The NDSS updated their website on Friday as a result of my column. The limits to diabetes supplies accessible through the NDSS are now clearly specified (they previously weren’t), and there is a much nicer wording for those who require supplies beyond the limit subsidised:

“We understand that some people may require more products to manage their diabetes. If you require further assistance with accessing products to manage your diabetes, please contact the NDSS on 1300 136 588 or at ndss@diabetsaustralia.com.au.”

Thanks to Diabetes Australia and the NDSS for reading the article and taking my opinion on board. I do feel really proud to stand up for all Australians living with diabetes and to walk away with a small victory.

However, we still have a long way to go.