Diabetes Musings

How I Became Empowered to Chat Act Change

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Wednesday’s #DSMA Twitter chat was about how we, as patients living with a chronic condition, can Chat, Act and make Change. Seeing as Wednesday nights always translate to Thursday mornings here in Australia while I’m at work, I thought I’d share my thoughts from the chat here today.

One year ago, I was a shadow of my current self.

I felt very much alone with my diabetes. I didn’t know anyone else with diabetes in real life. Most of the people around me didn’t know anything about the type of diabetes that I had. Nobody saw what I had to do to manage my diabetes. The insulin injections, the blood glucose tests, and all of the frustrations and emotions that I went through at night while the door to my room was closed shut.

It was very easy for me to shy away from diabetes. The more time that lapsed since my diagnosis, the more I would keep things to myself. I didn’t want to talk about diabetes with my family at the dinner table. I didn’t want to add my voice to the conversation if it meant that I had to talk about diabetes. I didn’t want to appear weak in front of others, because of my diabetes.

I struggled to embrace the support system that I did have in my healthcare professionals. I struggled to be open and honest in front of a revolving door of endocrinologists, being in a busy young adult diabetes clinic. I would smile and nod my head as she congratulated me on my excellent hba1c level, when in my head I knew that I had woken up hypo every night in that past week. Deep down I knew that things needed to improve, but I kept telling myself that things would change next week. And then the week after that. And then in the new year.

It’s very hard to feel empowered, let alone advocate, when you live with a condition that makes your life so much different from those around you at times. One year ago, I was far from an empowered patient.

Blogging and joining in the Diabetes Online Community on Twitter has changed my life, for the better. Having those connections from others who “get it” has filled a huge gap that was missing in my diabetes management. Having a blog which I was able to pour all of my thoughts into was extremely therapeutic. Receiving words of support from others in return was an added bonus.

I would like to think that my diabetes management is a million miles better than it was a year ago. I have a genuine interest in the disease that I live with, thanks to the Diabetes Online Community. I get information and inspiration from this community every day, that I can apply towards making my own diabetes management better. I have my own thoughts, and opinions that I want to talk about, on my blog and at home. If there’s a story on the news about diabetes, we’ll talk about it at the dinner table. If something interesting happens during the day, the first thing I want to do is get home and share it on my blog.

Being an empowered patient has helped me loads with my healthcare professionals. For one, I have taken my diabetes way more seriously in this past year than I ever have previously. In recent months I addressed minor concerns with my eyes and my feet straight away. I actively pursued a cancellation when I needed to see my endocrinologist in August, rather than wait until January. I packed my supplies like a crazy person when I went on holidays in July, rather than just taking the bare essentials. And I am now seriously considering an insulin pump, because I would like to achieve better than “okay” results with my diabetes managment.

Being a part of this community empowered me to advocate for something I strongly believed in – greater access to glucose test strips for Australians through the National Diabetes Services Scheme (NDSS). And that I did, through a column for Insulin Nation in July. That column resulted in a small change to the wording on the NDSS website, something I am extremely proud of. I have blogged, and intend on writing to Minister Ley, calling for government funding towards Continious Glucose Monitoring in Australia. And I like to think that the existence of this blog is a form of advocacy in itself each and every day.

The longer that I am a part of this wonderful community, the greater my passion is for all things diabetes. That passion grows more and more with each passing day. And that’s how I am empowered to #ChatActChange.

Join the #DSMA Twitter chats every Wednesday night at 9pm US Eastern Time by following @DiabetesSocMed and the #DSMA hashtag on Twitter.

I Know What My Supplies Mean to Me. #Insulin4All!

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If you’ve been reading this blog for a while now, you’ll know how strongly I feel about blood glucose monitoring and test strips. I could not possibly survive without my test strips. Sometimes I use as many as 10 a day. Test strips, among other diabetes supplies, help me to feel grounded and in control of my diabetes. I could not possibly live without them. So much so that I’ve been driven to write some pieces, both here and for Insulin Nation, advocating for greater access for people with diabetes in Australia.

So when Elizabeth Rowley from an organisation called T1International reached out to me about a campaign called #Insulin4All, it seemed like a natural cause for me to support.

It’s easy to take diabetes supplies for granted when I live in a country where I have always had excellent and affordable access. It’s easy to take my diabetes healthcare professionals for granted when they are so easily available, and at no cost to me under public healthcare. It’s easy to forget that these supplies, and professional support, are what keep me alive and healthy. Today, and each and every day for the rest of my life. And I couldn’t imagine my life without them.

When I think about disadvantaged people in other parts of the world who cannot access insulin, among other diabetes supplies, I really have nothing to be complaining about. There are people out there with type 1 diabetes who struggle to survive because they cannot access life saving insulin, blood glucose test strips and basic healthcare. Some take insulin without knowing if their blood sugar level is high or low. Some suffer diabetes complications, or die a premature death from a lack of supplies, education and healthcare. There are plenty of really touching stories on T1International’s blog.

I support #Insulin4All this November, because I know what my diabetes supplies mean to me!

I hope that you will join me, and have a bit of fun with it too.

So, you need your sign, with the words “we are the world in World Diabetes Day,” and the hashtag #Insulin4All. I felt like a kid again, with my ruler, lead pencil, eraser and textas, carefully outlining my letters and words on a straight line and then marking over them!

Then you need a photo, with yourself or a group holding the sign. Get creative. The best I could come up with was holding a handful of my Lantus pens. And, trying to find the best lit spot in the house free of noticeable junk in the photo!

Then, head on over to insulin4all.tumblr.com and upload your photo to the campaign wall.

And spread the word! #Insulin4All!

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Dear Content Marketing Specialist…

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I received an e-mail over the weekend that frustrated me, so I’ve penned my reply here today. For the purpose of this blog post, I will refer to my e-mail recipient as “Content Marketing Specialist.” Well, technically she was.

Dear Content Marketing Specialist,

I’m afraid I cannot support your client’s practice of giving people money for their unused glucose test strips. Yes, the person who you buy the test strips off might receive “some” financial assistance. I quote the word ‘some,’ because I seriously doubt that it would amount to anything significant towards those “financial burdens” of managing diabetes that “we all understand.” However, you neglect to mention that your client is also taking advantage of another person with diabetes in need when the test strips are onsold. Your client is making a profit as a middleman, a practice which is unethical.

I will not be placing a link to your client’s website on my blog, beside other charitable organisations on my resources page. I would hardly compare your client to some of the other charitable organisations on my Resources page. Organisations such as Diabetes Australia, who place the importance of assisting people with diabetes in need ahead of making a profit. Government organisations such as the National Diabetes Services Scheme (NDSS), who heavily subsidise the cost of my test strips with Australian taxpayers hard earned money. It seems like a real insult to them to take advantage of this scheme, which gives me greater access, better management and peace of mind over the disease that I live with.

I am extremely fortunate that I live in a country where I have access to diabetes supplies such as insulin, test strips and syringes. Supplies that I heavily rely on to keep me alive, and dare I say healthy. There are many other people out there in less fortunate parts of the world who don’t have the same luxury. People die each day because they cannot get access to life saving supplies. And if I had the means to do so, I would go there and help those people directly.

If you had actually read this blog that contains “useful information for diabetics,” you would know that I would not even consider standing for such a practice.

So, now I will put something to you. How about dropping your client and directing your resources towards an organisation or cause that is doing actual good for people with diabetes?

This, coincidentally, is what I will be doing throughout November, which is Diabetes Awareness Month.

I hope you will join me.

Many thanks,

Frank

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.