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Finding My Tribe

July 12, 2016 by Frank 4 Comments

People don’t see me at 2.30am in the morning, shivering, and shoving skittles down my throat. They don’t see me on a restless night, rage bolussing stubborn highs that refuse to go down. Or the finger pricks I perform every time I walk out of the room.

People don’t see the insulin pump that I pull out of my pocket underneath the table. They don’t see the loads of discarded test strips and insertion devices underneath the lid of my rubbish bin.

People don’t see the guilt I feel every time I put a donut or a piece of chocolate into my mouth. They don’t see how tied down I feel every time I walk out of the house, with a jacket or satchel stuffed full of diabetes crap. Or the failure I feel at the bruises and scars that are hidden underneath my shirt.

People don’t see the exhaustion I feel, every time the alarm clock goes off to check my glucose in the middle of the night. They don’t see the burnout I feel behind every smile, and every single ‘good morning’ that bounces off my face.

People don’t see the rollercoaster of emotions that flood through my body when the door to my room is closed. They don’t see the fear I feel, every time this condition takes an unpredictable turn. Or the judgement I place on myself, every time I go quiet.

You don’t see diabetes, when you look at a person like me. You see normal. I daresay you even see healthy. You see me drinking coffee and eating donuts, just like everyone else. You don’t see all of the tasks that managing this condition entails. You don’t see the isolation I feel, living with a condition that you need to experience to fully understand (and trust me, I wouldn’t wish that on anyone).

For me, a big part of what was missing from my own diabetes equation for the first four years was peer support. Nothing really does beat the feeling of hearing someone else say the words “me too.” “I get it.” Or “I hear you.” Nothing beats the anticipation I feel, every time I refresh my diabetes feed reader. Nothing beats the enthusiasm I feel during OzDOC chats every Tuesday night. Nothing beats the sense of community I feel every time I am glued to Twitter, that makes me feel far less alone with my condition. Nothing beats being able to lean on my family for support when I need it, something that I simply wasn’t able to do after my diagnosis.

There’s an old saying that goes, “find your tribe and love them hard.”

I’ve definitely found mine, and they certainly won’t be going away anytime soon.

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Posted in: Dealing with Diabetes, Diabetes and Emotions, Diabetes and the Online Community, Diabetes Musings, Diagnosis Tagged: Diabetes, DOC, NDW16, NDW2016, OzDOC, Peer Support, Social Media, Twitter

Making DOC to Real Life Connections

June 14, 2016 by Frank 1 Comment

Group Photo 2

One of the best things that came from Diabetes Exchange in Sydney was the opportunity to make some real life connections with members of the Diabetes Online Community. In the past year and a half, online peer support has changed the way that I look at and manage my own diabetes.

More specifically, I’ve been drawn to a group called the Oz Diabetes Online Community, where I participate in diabetes support chats on Twitter every Tuesday night. The individuals in this particular group are the ones that I feel I can relate to the most. Theirs were among the first blogs I read. Their Tweets are the first that grab my attention in the morning. They live in the same country as I do, and we likely share a lot of similarities (and differences) about life with diabetes. The chance to meet some of these folks was a dream come true.

Mind you, I still can’t believe that this happened to me. I’m not an athlete or a celebrity, nor did I know anyone of influence in the room. I’m just an ordinary guy who happens to have diabetes. I kept waiting for the event to be cancelled, or to be scheduled on another day where I wouldn’t be able to attend. I was half expecting to be told that I didn’t have enough blog readers, or that I would be too expensive to fly over from Western Australia.

Going into this event, I definitely felt a little bit like the odd one out. I lived on the opposite side of the country, and I was probably the newest of all the bloggers there. I hadn’t met any of the others in attendance prior. I was a little nervous about whether I would fit in, and whether the other bloggers would be as nice as they seemed online.

I was so nervous on the drive to the Ovolo hotel in Woolomollo on Thursday afternoon. I wondered who would be the first person I’d meet. Would I run into Renza getting out of a taxi? Would I walk up behind Ashley at the reception desk? Would I bump into Georgie on the way to my hotel room? I wondered if I would even recognise them outside of their Twitter photo.

I was escorted up to my loft style hotel room, which was like nowhere else I had stayed in my life.


And, sadly, hardly enough time to enjoy it. I was nervously counting down the minutes until 4 o’clock. When I knew I couldn’t put it off any longer, I nervously proceeded to make my way down to the lobby for event registration. I instantly recognised Georgie, Kim and Ashley exiting the elevator on the opposite side of mine, and the nerves were instantly relieved.

It was super weird at first. Even though I knew these guys online, I didn’t know them, really. It was super weird as we sat down, and part of me wasn’t sure what I was going to say to them. Hey, great blog post last week? I’m glad the registration in the lobby lasted an hour, as it served as a nice ice breaker. By the end of that hour, I’d had a decent chat with Ashley, Melinda, and PR ladies Laura and Hannah, and I’d had a few words with Georgie and Kim as well.

It was great to chat with Drew and Matt, who I did not know of prior to this event, over breakfast on Friday. I was honestly in awe of all of Melinda’s life experience with diabetes, which absolutely shines through all of her activity online. I had a nice chat with Kim on the boat, as well as a few silly photos. Renza gave me a few words of encouragement about my upcoming pump day on the way upstairs to pack my bags on Friday morning. Georgie and I counted down together as we inserted the Libre sensors on our arms. I had fun Tweeting with Ashley during Friday’s proceedings, despite the fact that we were sitting next to each other. Although I didn’t get a chance to have a chat with Tanya, I was inspired by the story she shared about managing diabetes and achieving great things in a way that worked for her.

Water Taxi 1

I guess my biggest takeaway is that I no longer feel like such a stranger around these guys. While some of the bloggers aren’t in the same circles as myself online, I do feel closer to some of the others. I feel like I do Tweet these guys more often. I have now replaced most of their “online” voices in my head with their real ones. And some of them are now Facebook friends, as well.

I feel so privileged to have met these guys, and I’ll remember our time together fondly. Here are the list of attendees and their blogs:

Ashley of BitterSweet Diagnosis

Melinda of Twice Diabetes

Georgie of Lazy Pancreas

Kim of 1 Type 1

Renza of Diabetogenic

Tanya of The Leveled Life

Drew of Drew’s Daily Dose

Matt of Afrezza Down Under

Group Photo 3

Disclosure: Abbott Diabetes Care paid for my travel and accommodation expenses to Sydney. I received a FreeStyle Libre reader and two sensors free of charge. There was no expectation that I would subsequently blog, and all opinions expressed are my own.

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Posted in: Dealing with Diabetes, Diabetes and the Online Community, Diabetes and Travel Tagged: Bloggers, Connections, Diabetes, DOC, Peer Support, Support

Happy Birthday, Type 1 Writes!

January 4, 2016 by Frank 3 Comments

One year ago, I knew absolutely nothing about diabetes beyond my own ability to live with and manage it. I didn’t really know of anyone else living with diabetes. I didn’t think that there were many blogs out there, let alone an active online community. I didn’t think that there would be much to talk about. I knew nothing of news and developments in my own community, let alone the rest of the world. I can’t even say I was very interested. I very much believed that this isolated reality I was living in was as far as life with diabetes would take me.

One year ago today, I began writing about my type 1 diabetes. I wanted my own space to share my thoughts on life with diabetes, something that I did not think there was much of at the time. I also wanted to pursue my dream of being a writer. One year ago today, Type 1 Writes was born.

My initial posts here didn’t even have much to do with diabetes. I spent so much time planning, designing, thinking and over-thinking this blog. I was caught up in trying to make my posts have a mass appeal, rather than just writing from the heart. I was writing about iced coffee, sleeping tips and footwear, for goodness sake! Today marks one year since my journey began, even though the first genuine posts about my diabetes didn’t actually appear here until April.

It was around then that I started using Twitter, and began to uncover that diabetes community. I’ll never forget my first OzDOC chat, and how friendly everyone there was. Weirdly friendly, like they all knew each other in real life! I’ll never forget how surprised I was at some of the follow backs I received. I’ll also never forget how excited I was when Diabetes Mine first retweeted, and included The Things I Don’t Tell You About My Diabetes in their DOC wrap up.

But it was Diabetes Blog Week in May that really inspired this blog. Those seven exhilarating days of reading and connecting with other people’s personal experiences of life with diabetes. Writing about my own diabetes and baring all. I truly felt a sense of community. At the end of that week, I knew what I wanted this blog to be. A blog about my own life with diabetes, written from the heart.

Blogging has certainly been full of surprises, mind you.

I honestly didn’t think that I’d be able to stick with a blog for a whole year, for starters. I never imagined that I would become so interested, and passionate about diabetes.  I never imagined that I would find a diabetes community that means so much to me. Most of all, I didn’t think I would find so much to write about diabetes. Writing that has extended beyond the reach of this site. A column at Insulin Nation, advocating for greater access to test strips. Posts that were featured on Diabetes Daily. A voice that was used to advocate for serious issues like Insulin4All. Experiences that inspired the Beyond Type 1 community.

I am a better person today for being a part of this community. I have never felt more confident with my own diabetes. I have never valued my diabetes with such a high regard. I have never been more passionate about anything in my life. And that cure that I don’t believe will happen, seems just that little more believable today.

It’s been an honour to share this space with you in the past year, and I can’t wait to see what’s in store for the Diabetes Online Community in 2016.

Happy Birthday, Type 1 Writes. Here’s to many more.

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Posted in: Diabetes and the Online Community, Diabetes Musings Tagged: Diabetes, DOC

My First World Diabetes Day, Twitter Style

November 16, 2015 by Frank Leave a Comment

This weekend, I celebrated World Diabetes Day for the first time in the whole five years that I’ve lived with this darn disease.

A great start to a blazing hot World Diabetes Day here in Australia. And #BigBlueTest-worthy, too! #WDD pic.twitter.com/WsGlpKCvvY

— Frank (@FrankSita) November 14, 2015

It was my first World Diabetes Day because, prior to this year, I’ve shied away from my diabetes a lot, which you can read about here. Blogging and connecting with others in the Diabetes Online Community this year has given me a great deal of confidence in the condition that I live with. The Diabetes Online Community has sparked a real interest, and a passion for the disease that I live with. So, a big part of World Diabetes Day for me was being able to join this community for a 15 hour Twitter chat and speak up.

@KellyRawlings absolutely. It took me years before I finally embraced my diabetes and didn’t shy away from it #WDDChat15

— Frank (@FrankSita) November 14, 2015

@diabetesalish thanks – its all of YOU peeps in the #doc who inspire me! #WDDChat15

— Frank (@FrankSita) November 14, 2015

#WDDChat15 means that I get to chat with awesome #DOC peeps who I sometimes miss due to time differences.

— Frank (@FrankSita) November 14, 2015

It’s important to come together today to forge lasting connections #WDDChat15

— Frank (@FrankSita) November 14, 2015

I think of all my wonderful #DOC friends. I draw inspiration from them, I receive support at any hour, I admire their enthusiasm #WDDChat15

— Frank (@FrankSita) November 14, 2015

Throughout each hour, a guest host tweeted five questions relating to a particular diabetes topic that we would discuss. There were many thought provoking topics brought up, experiences shared and issues discussed throughout the 15 hours, many of which I’m sure I missed.

It was really great to have one day where the Diabetes Online Community came together to speak, listen, advocate and support each other. I also forged some new connections along the way, some of which I’ll share with you.

First up, Cayla. Cayla is a young college student in the States, and I really admired the enthusiasm that she maintained throughout the chat. At one point I talked about how I would love to fundraise for my Public Hospital Diabetes Clinic, and Cayla told me to go for it. There were many more.

@FrankSita You could try and start a fundraiser or hold an event if this is something you are very passionate about! 🙂 #WDDChat15

— Cayla (@StrongerThanT1D) November 14, 2015

Next up was Kristin. Kristin is the mother of an 11 year old type 1 girl. It was inspiring to hear how Kristin’s daughter leads the diabetes discussions at home, as well as setting the boundaries of what she doesn’t want to talk about. Kristin, I’m sure your daughter has a bright future ahead of her.

Q2 @FrankSita It depends on the person. I often let my kid lead any discussions. Within the family, we talk all aspects #WDDChat15

— KristinT1dmom (@KristinInYYC) November 14, 2015

Next up was Kate. Kate and I found some common ground chatting about how we both find a lot of support from our families and the Diabetes Online Community, but not as many in real life.

I mostly talk about it w/ doc and sometimes my mom. I need more friends in real life who have diabetes so I can talk to them too #WDDChat15

— Kate (@aDoseOfDiabetes) November 14, 2015

I agree with you. I don’t know enough PWDs in real life…that’s where the DOC comes in handy though! #WDDChat15 https://t.co/QpsDVA1Ilc

— Frank (@FrankSita) November 14, 2015

Then there was Karen, who has lived with type 1 diabetes for 49 years. Karen told me that she didn’t feel that a lot of people understood her diabetes. Karen, I’ve felt exactly the same way many times in the past.

Q2 I don't talk about diabetes even close family don't understsnd the intensity of the disease and they never will #WDDChat15

— Karen (@karend1) November 14, 2015

I know exactly how you feel. But I’m sure they’re prepared to listen if you ever want to…#WDDChat15 https://t.co/hpFYFjetLk

— Frank (@FrankSita) November 14, 2015

Finally, hats off to Chris for a marathon effort for the whole 15 hours of chat.

My name is Chris. I have type 1 and I've been here since 7 am. My diabetes hasn't taken a break since 2004 so why should I? #WDDChat15 #dsma

— Chris Stocker (@LifeofaDiabetic) November 14, 2015

We’ve actually been following each other for a while, but we haven’t really chatted before. Chris is a freelance writer and owns his own SEO business.

@LifeofaDiabetic awesome…that makes you the first SEO person I know who isn't a spammer…#WDDChat15

— Frank (@FrankSita) November 15, 2015

We had a good laugh at the fact that both of our respective school teachers hated our writing, and yet now it is a significant part of each of our lives. You can also check out Chris’ blog, The Life of a Diabetic.

My year 12 English teacher put me in a "C" box. If only she could see my blog and advocacy today #WDDChat15

— Frank (@FrankSita) November 15, 2015

Haha I say that all the time. My freshman teacher hated my writing. Well it is my career now #WDDChat15 #dsma https://t.co/EdDkQyW10H

— Chris Stocker (@LifeofaDiabetic) November 15, 2015

If the sense of diabetes community is something that appeals to you, I strongly encourage you to create a Twitter account. People in the Diabetes Online Community are very friendly, and there’s always somebody around to help you day or night. The diabetes community also comes together every Wednesday night from 9-10pm ET (US) to chat, and you can join in by following the #DSMA hashtag.

Thanks again to all of you who joined in and made my first World Diabetes Day a bright one!

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Posted in: Diabetes Advocacy, Diabetes and the Online Community Tagged: Diabetes, DOC, DSMA, WDD, WDDChat15, World Diabetes Day

“Really? But You’re So Slim and Fit!”

November 6, 2015 by Frank 1 Comment

I briefly checked into a bit of an impromtu #DSMA chat yesterday morning (thanks to the end of daylight saving time in the US, the chat now happens to coincide with my morning tea break at work and I can check in!).

The question that was being discussed at the time was one of the simplest, yet mind blanking questions. How would I define diabetes? Would I be type specific? Broken pancreas, insulin injections? Or would I go for a blanket definition? Regulating blood glucose levels, healthy lifestyle? Would I say something witty? It kind of stumped me a little.

I recalled a chat over the phone with a work colleague on Wednesday. Coincidentally, we were discussing the issue of a diabetes related appointment during work hours. I casually mentioned that I had diabetes, and her response kind of suprised me.

“Really? But you’re so slim and fit!” 

I wasn’t suprised by her response. Nor did it upset me. What I was suprised at, however, was the way in which she responded. That it was a big deal. I guess for me, I’ve gotten to the point now where bringing up diabetes in real life is not a big deal.

Which brings me to my own interpretation of that #DSMA question. I would like people to know that diabetes is not something that I inflicted onto myself. And I’m not saying this as a selfish person with type 1 who is completely and utterly offended. I’m saying it for people with all types of diabetes.

I’m a bit sick of the media associating diabetes with all of those “lifestyle” factors. Yes, obesity is an issue. Yes, inactivity is an issue. Yes, they’re epidemics, along with diabetes. Yes, in some cases they can be prevented. And yes, we need to work to halt them.

And we can. Independently of each other.

Why can’t we promote healthy diets and active lifestyles, without bringing the words “causes diabetes” into the mix? Wouldn’t it lead to the same outcome? We’d be working towards haulting those epidemics, without stigmatising the people who are already living with chronic conditions.

People living with diabetes would feel motivated and empowered to manage their condition through a healthy lifestyle. And at the same time we’d be encouraging people at risk of developing these conditions to adopt healthier lifestyles.

The only difference?

People already living with diabetes wouldn’t be stigmatised. They wouldn’t have to hear demoralising messages that blame and shame them. They would be able to look forward, instead of being continually dragged backwards into the pit of could ofs, would ofs and should ofs.

Truth be told, nobody chooses ANY type of diabetes. Except for the health care providers, researchers, advocates and donors who are trying to make sense of, and solve it. Each and every single day. And it’s time that we, the patients, are encouraged to look forward rather than backward.

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Posted in: Diabetes and the Online Community, Diabetes Musings Tagged: Diabetes, Diet, DOC, DSMA, Lifestyle Factors, Obesity, TypeAll
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