Continuous Glucose Monitors

Guest Post – T1D Family Story

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Jules reached out to me last week in the Dannii Foundation Facebook group. She has kindly accepted my offer to share her family story here today, in order to raise awareness of the importance of government funding towards Continuous Glucose Monitoring. If you are affected by diabetes in Australia, I encourage you to write to the Australian Minister for Health, Sussan Ley – check out my letter here.

Dear Minister Ley,

I write to you today, to let you see a day in the life of our family of 5.

We are not your normal run of the mill family.

Our daughter, J was diagnosed with Type 1 Diabetes (T1D) at the age of 5. That day, our lives turned on its head. I had seen T1D in a family friend growing up. I often found myself thanking my lucky stars that I didn’t have this disease! I was grateful as my children started to grow, that I didn’t have medical issues with my kids! How quickly this changed on that day, almost 8 and a half years ago.

That isn’t where our story ends. 9 months later, my second daughter, E was born. It should have been the happiest time of our lives. It was, briefly, until my son, T was diagnosed with Coeliac Disease (CD) one month later.

Another Autoimmune Disease had found us! I kept questioning myself, what have I done wrong? Could I have done something different? The answer is no! There wasn’t ANYTHING I had personally done wrong!

That very same year, we lost my Dad to Cancer. A huge person in our lives was taken from us at such an early age!

A couple years after this, T was diagnosed with ADHD. Another reeling moment, fighting for him and for people in the Health Profession to just listen to us.

As time went on, puzzle pieces started to fall into place. We had traced autoimmune diseases back to my Great Grandmother who had Rheumatoid Arthritis (RA). Funnily enough, I found out that I too have RA. So more research was done. All the while, dealing with T1D, CD, ADHD and the death of my dad.

In 2013, my mother was diagnosed with Cancer. We first found out that she was terminal on the 25th of May, which was T’s birthday. Merely 3 months later, my Mum passed away. It was yet another blow to the family that is still very real today, and has left mental scars on us all.

Prior to her passing we were starting to question if T had ‘bigger’ issues than just ADHD. Mum’s dying wish was to see him tested for Autism. T was tested, and on October 30 2013, he was diagnosed with Autism.

In that time, E started school. We had high hopes for her, as we still do. Her teacher turned to me and said, “please get her tested for Autism.” Only a couple months later (January 2014), E was diagnosed with Autism also.

Let’s skip forward to December 2014. It feels like hurt just keeps following us. I was diagnosed with Coeliac Disease. Let’s skip forward to September 2015. I was diagnosed with Multiple Sclerosis (MS). Let’s skip forward a month on, and my husband was diagnosed with Gilbert’s Disease and placed into the high-risk category for Lupus. OMG! Yet another autoimmune disease was trying to invade our lives.

Ok let’s take a huge step back. Where does our not so little J fit into all of this? Remember that ‘little’ girl who was diagnosed with T1D at the age of 5?  She’s now almost 14.

Through all of this – dealing with diabetes, Coeliac Disease, Autism, ADHD, Cancer, Death, Rheumatoid Arthritis, Multiple Sclerosis, Gilbert’s Disease and Lupus in our family – where does the time and energy come to look after a child with T1D?

It comes mostly from me. I test her blood sugar levels at 10pm, 1am, between 3-4am, and then again at 7am when we get up. I can tell you now that most days I’m utterly exhausted! That is without taking into account that I have MS. This kills most of my energy levels. I end up in bed most of the day conserving energy for appointments for the kids, or just to get up and make dinner for them.

A day in the life of our family is a HUGE undertaking! It wasn’t something I chose or deserved to get. It is what it is. BUT there is something that would hugely help our family.

J doesn’t have a Continuous Glucose Monitor (CGM). Why? Because the cost of this device is out of our reach. We are a 1 income family. I am a stay at home Mum as it is too hard to juggle appointments for all of my kids’ special needs and requirements. A CGM would add that layer of not having to guess what I could do wrong. Often at night before bed, J and I will look at her numbers and then at each other. Which way is it going? If we only knew, we could act accordingly and treat the right way to allow her a nights full sleep! Often our normal schedule of testing goes out the window and we’ll have hourly to 2 hourly testing.

J is so damned tired and cranky. She’s just over it! She just wants to do normal teenage things. And she would give a lot for a good night’s sleep. Please, uninterrupted sleep would mean the WORLD to her. At the same time, OMG, I just want to sleep too!

Please give it to us in the form of funding for a CGM.

Yours Sincerely,

Jules.

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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.