Advocacy

Type One: Breaking Misconceptions With Humour

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I don’t do Wordless Wednesdays, because I feel like I’m ripping you off of a blog post.

However, I feel that today’s entrant is a very worthy contender.

Landis got in touch with me last week and shared her web series, Type One with me. I enjoyed it so much that I felt compelled to share it here today.

Type One is about a young man, Matt, who has type 1 diabetes and is looking for love. Landis and her co-creator, Mike, both have personal connections to type 1 diabetes in their lives. Their web series uses comedy to break the common diabetes misconceptions and stereotypes, and if the first episode is anything to go by, they’ve done a smashing job.

It’s only an eight minute episode, and it’s well worth a watch. Look out for the part where Matt so casually pulls out his meter and insulin pen on a first date – I was hysterical.

Landis and Mike are hoping to raise enough money to film seven more episodes. You can check out their fundraising page here, which also features a Q and A with Landis and Mike.

Tomorrow, Diabetes Will Still Be Here

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Today marks the 30th of November. Today marks the final day of Diabetes Awareness Month. Today, I feel like I should be writing something grand to wrap it all up. Today I feel like I, along with the rest of the Diabetes Online Community, should be applauded for all of the energy put into November.

Tomorrow, as I turn over another page of the calendar, my focus will likely shift.

Tomorrow will mark the first day of Summer. Tomorrow, I will need to seriously get thinking about a birthday gift for my brother. Tomorrow, I will need to begin that dreaded task of Christmas shopping. Tomorrow, I will need to start my long overdue ritual of decking out our patio in Christmas lights. And tomorrow, I will begin dreaming of the beach, the tennis and winding down for the year.

However tomorrow, I will still have diabetes. Tomorrow, you will still have, or will still be affected by diabetes. And tomorrow, many more people will be diagnosed with, and will be newly affected by diabetes.

Tomorrow, I will still need to check my blood sugar level ten times. Tomorrow, I will still need to give more than just the four insulin shots my doctors prescribe. Tomorrow, I will still need to count the carbs in the foods I choose to eat. Tomorrow, I will still need to correct a blood sugar high. Tomorrow, I will still need to treat a blood sugar low. Tomorrow, I will still be frustrated. Tomorrow, I will still be plagued with long term fear. Tomorrow, I will still have to continue to perservere.

Tomorrow, we will still have people all over the world affected by diabetes. Tomorrow, we will still have people who cannot afford insulin and other basic supplies. Tomorrow, we will still have people who cannot access diabetes education and basic healthcare. Tomorrow, we will still have people who are unable to access technology that would make their diabetes management simpler. Tomorrow, we will still have innovations in diabetes care that are out of reach for many.

Tomorrow, I would love for nothing more than to shove diabetes into a drawer and forget about it until next November.

But while all of these issues are still here, Diabetes Awareness Month will never be over at the 30th of November.

Advocating Long, and Hard, and Always

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Throughout November, I’ve certainly felt an increased level of energy, and activity in the diabetes community. Over the weekend, this community came together from all over the world for the occasion of World Diabetes Day. To advocate, to speak up, to raise awareness and to share.

One of the “events” to mark that occasion was the World Diabetes Day Chat over on Twitter. For 15 straight hours we shared our experiences, we tackled hard hitting issues, we bounced our advocacy efforts off of one another and we raised our voices. It was a twitterstorm of diabetes talk. It was one of the most inspiring, and empowering moments of advocacy. I feel so much more motivated and focussed towards my own advocacy efforts as a result of that chat.

When I finally put my phone down at 11am on Sunday morning, I felt kind of fizzled. I wouldn’t say that I feel burned out, but I certainly feel as though I could use a breather. And when it was time for our weekly #OzDOC chat on Tuesday night, it seemed that I wasn’t alone.

Advocacy is not easy. Advocacy is not always within our comfort zones. And advocacy does not stop. I kind of feel like Chris when it comes to advocacy.

So while I’m taking a breather here this week, advocacy, or the thought of advocacy, certainly has not stopped.

Following on from my letter to the Australian Health Minister Sussan Ley, I want to get in touch with my local Member of Parliament on Continuous Glucose Monitoring, and broader diabetes issues in general.

I’m still paying attention to the news, and to social media morning, noon and night (inbetween the occasional tweet about The Walking Dead, and my afternoon coffee and cannoli). I am truly invested in the condition that I live with, and that does not ever stop.

Diabetes Daily has offered to syndicate some of my old blog posts, which is an honour. I’m pretty excited to be able to extend the reach of my writing. Getting a professional looking profile photo, and writing a few professional sounding sentences about my purpose in this community is actually a lot harder than you might think!

This afternoon, I’m paying a visit to the Type 1 Diabetes Family Centre in my local area. Hopefully more on this in the next couple of days.

I’m thinking about how I could possibly promote the wonderful Oz Diabetes Online Community a bit more in my local area.

And I’m still thinking about #insulin4all, and how we can make change happen for those who are less fortunate. I’m feeling a bit stumped on this one…

On top of all of this, I’m still living with, and managing my own diabetes (which I don’t feel like I’m doing too well at the moment, to be honest).

In the words of my friend Ally at Very Light, No Sugar, advocacy is keeping the faith. Advocacy is advocating long and hard, and always. And we advocate because #weneedacure (as difficult as that last part is for me to believe).

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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