Month: October 2015

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.

The Case for Subsidising CGM in Australia

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It’s good to see the issue of Continuous Glucose Monitoring getting more attention in the news at the moment here in Australia.

The Danii Meads Barlow Foundation have been doing a fantastic job at the moment of getting the word out into the media. A couple of weeks ago, this foundation provided Catherine Rowley with the support to address our leaders on the Q and A program regarding CGM support from the Australian government. You can read about that here. Their advocacy work also resulted in a report on Today Tonight yesterday, raising awareness of the founding couple’s daughter who passed away from unnoticed hypoglycemia during the night. The foundation are currently advocating for the government to provide $5,000 per year towards the cost of maintaining Continuous Glucose Monitoring device consumables.

Rebecca Johnson, who lives with type 1 and manages the Telethon Type 1 Diabetes Family Centre here in Western Australia, also wrote a pretty powerful piece in The West Australian newspaper yesterday. She hits the nail on the head perfectly.

“Managing type 1 diabetes comes at a cost. It costs me dignity, like the time I was spoon fed honey on the floor at a party because my blood glucose was so low I couldn’t see or talk. It costs me time: countless hours calculating insulin doses, testing my blood, counting carbohydrates. It costs me opportunities, at work and in life. It also costs a lot of money.

To monitor my blood glucose around the clock I use a thousand dollar machine that runs on a battery that costs $500 to replace. The sensors which I insert beneath my skin to read my glucose level cost $100 and must be replaced every six days.

The government does not fund continuous glucose monitors. It comes out of my pocket and it costs me, a young person with diabetes, more than $5000 a year to run. I fund it because I want to live a healthy, complication-free life, away from emergency admission and hospital stays, dialysis, eye laser treatments, chronic wound care and amputation surgery. Continuous glucose monitoring can prevent hospital admissions and expensive long term medical care for people with type 1.

In a time of extraordinary healthcare costs attached to diabetes care, our Federal Government needs to recognise that by supporting people with type 1 to take the very best care of themselves, the burden on the health system will be significantly reduced.

This device can save my life. My monitor is set up to sound a loud alarm when my blood glucose level is dropping. It wakes me in the night when it identifies a dangerous downward trend before my glucose is so low I can’t move or help myself.

To me, continuous glucose monitoring technology is the single most important innovation in diabetes management since the invention of synthetic insulin. It gives real time glucose information to people with diabetes to identify trends in their levels and fine tune their diabetes control. This essential biofeedback is something that every person with type 1 diabetes needs to better understand and manage their condition.

It is also the only technology that can help prevent “dead in bed” syndrome, where people go to bed with normal glucose levels and are found dead in the morning from massive, undetected overnight hypoglycemia.

Continuous Glucose monitoring is streets ahead of pricking your fingers up to 10 times a day to test your blood for glucose. Testing like this is relatively easy in daylight hours, but often many hours are left unmonitored overnight. Unmonitored glucose levels are fraught with danger. Glucose levels that are too high damage every organ and system in the body, increading the risk of kidney failure, heart disease or blindness. And if glucose levels drop too low, the sleeping person can seize, fall into a coma, and die.

A hospital admission for a single severe hypoglycaemic event costs the public system over $5,000. Treatment of diabetes related complications can cost more than $11,000 a year per patient.

It takes a visionary government to invest in new technology, and the case for funding continuous glucose monitoring is compelling. It will save the public system money, time and resources immediately and in the future. It will also give me and other sufferers a daily blessing. We will wake up in the morning.”

I am certain that every person with diabetes would accept CGM technology if it were more accessible here in Australia. If you would like to see CGM technology subsidised by the Australian government, then I urge you to write to your local Member of Parliament, and to the Minister for Health Susan Ley (click for contact details).

Taking Words, and Actions, To Heart

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I’ve always been the kind of person who takes a lot of what others say to heart. And letting those little things get to me is sometimes my biggest downfall.

I woke up yesterday morning feeling pretty good. Things were getting back on track diabetes wise, I’d had a decent night’s sleep and I was ready to take on another day. I got to work, and it was all smiles and laughter with my work Mums as usual. “Dobro utrov, ca cosi?” Which is Macedonian for “good morning, how are you?” It’s one of the little perks that I love about getting to work in the morning.

But after I’d started work yesterday morning, there was one small comment that was enough to turn around my mood, and my day. What was said isn’t as important as the way in which it affected me. I hate how much I took that comment to heart. I hate my behaviour that followed that comment. My moodiness, my negativity, and my stubborn refusal to let that comment go through the morning. While it may have taken somebody else to make that comment, it was me who chose to let that comment ruin my day. And I hate myself for it.

And in a weird way, my attitude towards that situation yesterday kind of parallels my attitude towards diabetes. Every decision that I make has an impact on my diabetes. Every item of food that I eat. Every drink that I put in my mouth. Every place that I choose to visit. Every activity that I choose to do. I carry diabetes along with me, every step of the way. Whether I like it or not.

And it only takes one insulin dose. One finger prick. One really high blood sugar reading. One anger fuelled over correction. One weakening hypo. One handful of jellybeans. One small action is enough to throw my diabetes sideways, and turn my day upside down. It’s enough to make me angry. Teary. Emotional. Moody. It’s enough to make me beat myself up for hours. It’s enough to ride me with guilt for the rest of the day. It’s enough to make me lose my motivation.

I got some wise words of advice from some friends in the staff room later in the day. I know the real truth surrounding that comment, and I shouldn’t let anything else that’s said bother me. Let it in one ear, and out the other.

And I know the truth behind my diabetes management, also. I am living with an unpredictable disease. I am stepping into the shoes of a perfectly functioning pancreas, something which is not easy to do. I find incredible strength to step up to that task, each and every single day. I fulful this role to the best of my ability. It’s something that many others wouldn’t even be able to imagine doing. But I am only human. And I must forgive myself when things don’t go as planned, and take away the added wisdom for next time round.

I must learn not to take words, and actions, too much to heart.

Nightly 1am Blood Glucose Checks

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I’ve always based my decision to check my glucose levels overnight on how confident I am that they will remain stable. There have been good stretches where I have enjoyed several weeks of stable numbers through the night. And some wonderfully uninterrupted nights of sleep. Then there have also been some terrible stretches, where I have had absolutely no confidence in my glucose levels whatsoever. Which pretty much sums up the past couple of weeks for me.

I’ve been stuck in a bit of a rut these past couple of weeks. It probably started with a few days of less than perfect food choices. It would have been followed by a couple of days of less than ideal, and even harder to control, numbers. It has resulted in a lack of energy, and some unhealthy habits on my part. Like some late nights, and some extremely long weekend sleep ins. And the longer I’ve let this go on, the harder it has been for me to pick myself up and begin to climb out of this rut.

There is one thing I have done differently during this rut, however. I have taken ownership for the consequences of my unhealthy behaviour these past couple of weeks. That consequence is getting up at 1am every night to test my glucose levels. I’ve dialled up my Lantus dose to cover the added stress, fat and carbs consumed. But I’ve never really felt certain whether my glucose levels will settle, or spike again after I go to bed (mostly the latter).

There’s no worse feeling than waking up to something like 15. Or even worse, 20. It puts a huge damper on the quality of my day, and the people I interact with. I hate thinking about the fact that my glucose levels have been sitting at those crazy high levels for the better part of 8 hours. I am ridden with guilt when I think about how irresponsible I’ve been, and of all the damage that I’ve done to my body.

During this rut, I’ve managed to catch a lot of those highs at 1am and bring them back down within range by morning. I’m quite proud of that. Having control over those night time numbers has slowly restored some of my diabetes motivation. Gradually I’m getting back into my healthier habits, and my insulin requirements seem to be getting back to normal once again.

By the time I went to bed on Sunday night, I finally felt confident that my glucose levels would not rise through the night. What I did not anticipate, however, was going hypo at 1.30am. But I will still take it as a win. I just need to drop my Lantus dose a tad more, and I should be good to go once again.

Hopefully ready for the start of another good stretch.

School Bus Memories

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As I went walking on Friday afternoon, it occurred to me that I just so happened to be retracing part of the route that my old school bus would take every day. And being the second last Friday in October, it also just happened to mark a certain number of years since I finished school. And, a couple of hundred Friday afternoons since I last caught my number 2 school bus. Catching that bus every day was a significant chapter of my life, and one of the final chapters that I closed before my diagnosis.

I can remember waiting outside the school gates for that bus to arrive every day. On blazing, sunny 40 degree days, and on cold, blustery grey days. I can remember getting excited on the days where our bus was one of the comfortable, spacious, new air conditioned ones. And I can remember being depressed every time our bus was one of the old, squashy, rattly ones with ripped seats and graffitied windows.

I can remember being given a word of advice not to sit at the back of the bus on my first day of year eight, because that was where all the “cool” kids sat. And I can remember eventually becoming one of those cool kids who sat at the back of the bus when I made it to year eleven and year twelve.

I can remember how full my school bag used to be on that bus. Full of the text books I told myself that I would study that night. The assignments I convinced myself I’d get a head start on that weekend. The school blazer that I was supposed to wear all the way home, but stuffed into my bag the minute I got onto that bus and out of the teacher’s sight. The lunchbox that never saw the light of day because it was “uncool” to take it out into the school yard. My very first Motorola flip phone, wallet, keys and drink bottle.

And absolutely nothing else.

If there’s one thing that those bus rides mean to me today, it’s the fact that it was one of the last chapters of my life that was completely diabetes free. There was no blood glucose meter to carry around, making sure that it wasn’t squashed by the weight of my textbooks. There were no sneaky glucose checks or insulin correction shots before everyone else got on the bus fashionably late. There were no bags of jellybeans to fumble around for on the bottom of my bag if I was feeling shaky. I was able to happily eat all of the junk food that was passed around and not feel guilty for it. I didn’t have to think about my next insulin shot.

Looking back today, that world seems completely unreal to me. But it was there. It was reality. And it feels like only yesterday that I was getting off that number 2 bus for the very last time.

And when I got off at that bus stop at ten minutes to four each day, my biggest concern in the world was what treat I would have when I got inside. Potato chips or a bowl of ice cream? Lollies or chocolate? Popcorn or salted nuts? There was the latest school politics that I couldn’t wait to tell my Mum and little sister. Those much debated “favourite” students. Those love to hate teachers. And all of the homework that I probably wouldn’t get done that night.

So in other words, not a worry in the world.

Best of luck to all the Year 12 students preparing for final exams and graduation at the moment. Fond memories.