Diabetes Musings

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.

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.

No Responsibility From Insulin Pump Companies

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Last night, I attended an information session on insulin pumps at Diabetes WA. And this morning, I’ve got about a million things that I want to write about.

I’ve been on Multiple Daily Injections since I was diagnosed five years ago. I’ve never seriously considered an insulin pump, and I can’t say that I know too much about them. I’ve thought about going to one of these information sessions over the years, but it was just one of those things that I never got around to. Okay, truth be told I procratinated on RSVPing to those events until it was too late. Over and over.

I guess what motivated me this year was the fact that I am now a part of the Diabetes Online Community. I think, talk and write about diabetes every day. I feel more motivated towards my diabetes managment, just from interacting with you. I see so many of you blogging, tweeting, screenshotting and instagramming pump stuff each day. I want to understand it. And I want to seriously consider it as an option going forward.

Representatives from a few of the insulin pump companies were there to chat to before and after the session. And to be honest, they were absolute vultures. I’ve never seen such eager salespeople out there in full force, desperately wanting our business. When our fantastic host Margie asked for some sample tubing to show us, it literally seemed like a race to see which rep could get to Margie first. As I asked one of the reps if a meal bolus was as simple as inputting the number of carbs into the device, she began hurriedly cramming in as much information as she could before the talk resumed. I’ve never seen anything like it.

The topic of Continuous Glucose Monitors came up briefly. As I have written in recent days, Continuous Glucose Monitors aren’t subsidised by the government here in Australia. The cost of purchasing a CGM device and its operating consumables is excessive. While having a CGM may not matter to myself, I know that it could make a world of difference to young children and parents out there.

I thought it was rather interesting to hear the representatives in the room quickly removing themselves of any responsibility for those excessive costs. They urged us to write to our Members of Parliament. They urged us to lobby the government for subsidies towards CGMs and diabetes devices. As though it’s out of their hands.

These companies are responsible for the excessive costs of these devices. These companies are making a profit off of our disease. There are so many companies and product lines out there for that very reason. That vulture like behaviour occurs for that very reason. And I hardly got the feeling that these people genuinely wanted to help me make my diabetes management easier. I so badly wanted to know if they even had diabetes themselves!

I hope I haven’t taken anything away from the Diabetes WA session. It was fantastic and I have so much more to write about. Stay tuned – I’ll have more in the days to come.

At 10.41pm, I was cutting it close with yesterday’s #DOCtober photo. An exclusive look behind the scenes of the jacket I wore last night.

https://instagram.com/p/80lsx1A_bu/?taken-by=franksita

 

The Invisibility of Type 1 Diabetes

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Yesterday I shared Catherine’s story. One of the many type 1 diabetes parents dealing with, well, everything that you would expect (and more) from a young child with type 1 diabetes. A Continuous Glucose Monitor would be a massive relief for Catherine and her daughter, and would change their lives.

Seeing Catherine’s story on television, and the discussions that followed at home simply reminded me of just how invisible diabetes is. Not enough people are aware of what people with type 1 diabetes go through in order to manage their condition. People simply don’t see a lot of the aspects that we deal with in order to manage this disease. And our media certainly don’t give it a lot of attention, either.

Our media here in Australia spend a lot of time focussing on those “lifestyle” factors that may cause type 2 diabetes, in some cases. Which is fine. These are all serious issues, which can be prevented. I’m all for that. However, it just seems that I always hear about how we need to lose weight, how we need to eat less sugar, how we need to eat more fruit and veg, and how we need to exercise more. How this is an epidemic that will destroy the world by the year 2030. Okay, maybe I’m exaggerating there. But Mum could even recall being asked if I was overweight after telling an aquaintance about my diabetes a few years ago. It just goes to show how little awareness there is of type 1 diabetes out there.

I’m not blaming anyone for this. I’m simply stating a fact. There’s little awareness of type 1 diabetes out there because it’s simply an invisible disease. It’s easy to spot things like excess weight, unhealthy food choices and lifestyles that are lacking physical activity in the world. It’s not easy, however, to spot things like glucose monitoring, carb counting and insulin injections. It’s not easy to spot sleep deprivation, frustration and stress from dealing with, and worrying about type 1 diabetes. It’s not easy to spot parents who have had to take time away from work in order to properly deal with a type 1 diabetes diagnosis. It’s not easy to spot parents concerned about how their child, and school, will cope with type 1 diabetes.

I say that we do a pretty good job of keeping it together when we’re out there among the rest of the world. We’re pretty strong people, you know.

And that’s where Catherine’s story comes in. She did a fantastic job of advocating for all of us type 1s, and helping to shed some light on the issues that we have to deal with behind closed doors.

I can only hope that this media attention will help deliver technology that will change the lives of many young families in Australia dealing with type 1 diabetes, and help make this disease a little less invisible.

I almost forgot my #DOCtober photo yesterday, so my last minute photo idea at 9pm was to change my Lancet!

https://instagram.com/p/8xzm_Mg_en/

 

Diabetes Pressures Without CGM Subsidies

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I was rather touched by an awesome type 1 Mum who spoke out about Continuous Glucose Monitors here in Australia on last night’s episode of Q and A.

Aussie Type 1 Mum Catherine asked Ken Wyatt, our Minister for Health, when Continuous Glucose Monitors would be subsidised by the Australian Government and hence bringing us into line with other countries.

She noted that the cost of a Continuous Glucose Monitor here in Australia was $5,000 per year, which was considerably less than the costs of looking after people with diabetes who are hospitalised. During a one week trial last year, a Continuous Glucose Monitor saved Catherine’s daughter in three instances where her blood glucose levels were dangerously low and could have resulted in hospitalisation.

Catherine told us that she checked her daughter’s blood glucose levels every two hours. She was often sleep deprived from managing her daughter’s type 1 diabetes throughout the night. Diabetes kept her awake for eight hours last week, in an instance where she was unable to get her daughter’s blood glucose to rise above 4mmol/L.

As a single parent, Catherine feels the financial pressures of type 1 diabetes. She cannot afford to work part time, or to stay at home with her daughter. A Continuous Glucose Monitor would allow Catherine to keep an eye on her daughter’s blood sugar levels remotely, and reduce a lot of the stress in her life.

As for the reponse given by the politician on the program, it was the typical response given by a politician. Wishy washy xtatements implying concern and high regard for the issue, but nothing committal.

I can relate to wanting to keep a close eye on blood glucose levels. I will test up to 10 times on most days, just to make sure I’m not having too many nasty hypos or being too high. There are nights where I so badly want to test in the middle of the night to make sure I don’t end up too high. And I often hate myself the next morning for succumbing to my exhaustion and not doing so when I see a high blood glucose level. And I don’t earn a lot of money, either. At the moment, a Continuous Glucose Monitor is a luxury that I simply cannot afford. When I’m paying the bill at the Chemist, I often think of all the other things that I would rather have spent that money on.

Catherine, you’re not alone. Thankyou for sharing your story, and for bringing this issue in front of our leaders, and the Australian public. Well done, type 1 Mum.