Me Too!

"We read to know we are not alone."

C.S. Lewis said that.

I first heard it in the movie Shadowlands and I remember thinking that it was a very powerful line.

I think we do a lot of things to know we are not alone.

We check Facebook more than we really need to.

We blog. We read blogs. We take pictures. We share silly videos. We buy the latest pair of boots that everyone else suddenly seem to be wearing. We read Fifty Shades of Grey (whether we liked it or not) so that we too could be part of the conversation.

Last night I met up with a few people in Cambridge. I didn't know any of them and I felt bad because they had to put up with my coughing all through dinner. They are all involved, either as speakers or as organizers, in an event this coming November for women with Type 1 diabetes.

I have been asked to speak at this event. Last night we got together to talk about what the day would look like and what each of us would speak about.

Before I went, I asked Doug what he thought I should offer to talk about during my presentation. He had some pretty powerful suggestions.

Talk about how exercise and diabetes is really hard but that it's worth the effort. The dangers of a low during a run far outweigh the dangers of a sedentary lifestyle. Talk about how living with diabetes is scary and how to use that fear to give you courage to do other things. To try other things. To say yes to things that scare you.

Talk about how people with diabetes just want to feel less alone. How they want to feel like everyone else. Talk about how people are often worried about using devices like insulin pumps even though those devices can make it easier to care for your health. Talk about how they are worried because they think they will be 'less sexy' if they wear a pump. Talk about how they worry about telling a new partner about their diabetes when they are starting a new relationship. Talk about the diabetes online community and how it helps to make you feel less alone.

The diabetes online community is like a big huge chorus of strangers singing 'me too!'. A chorus of people whose daily adventures and frustrations can instantly make me feel like I am not alone.

I read blogs to know I am not alone.

I speak to others about diabetes to know I am not alone and to show others they are not alone.

I wear my pump on my belt to show others they are not alone.

I want to add my voice to the big huge choir of people singing 'me too'.

Friends for Life 2014 - the first half

Friends for Life is already half over. It's hard to believe and yet not at all surprising. Time usually flies when one is having fun and the more fun one is having, the faster it flies. 

I arrived in Orlando on Tuesday morning. The trip was as easy as it could be, made even more so by the fact that I was on the same plane as the famous Shawn Shepheard from the Diabetes Champions Network and Sugar Free Shawn. He is a wealth of knowledge, hilarious and ridiculously easy to talk to - a great combination in a travel buddy. Especially one that I only met two weeks earlier.  

Tuesday afternoon was pretty low key. Travel, check-in, unpack, explore the Orlando Marriott Resort, watch Belgium beat the US in the World Cup game and enjoy a delicious hamburger for dinner while chatting it up with the Animas gang. 

The best part of Tuesday was getting my famous green bracelet. As soon as I had it on I couldn't help staring at people as they walked by, checking out whether or not they too wore the famous green symbol that showed they were part of the tribe.  

Got my green on! 

Wednesday is when things really began. 8am was the First Timers coffee where we joined a room-full of families, couples and individuals. People with T1 are easily spotted by their green bracelets. First times are just as easy to pick out of the crowd.

One glance and you know I have Type 1, am a first timer AND come from a place called Canada. 

I met one couple who had adopted five children. One of them developed Type 1 in January. All seven of them made the trip to Friends for Life. Seven orange bracelets. One green one. Such a powerful message of the importance of having a support team.

Shawn and I spent most of the Wednesday together. We went to two sessions on Social Media led by the famous Scott Johnson and Kerri Sparling. We explored the expo, taking photos with Sebastien, showing off our Animas Vibe pumps to anyone who asked to see them and trying out cool things like Glucolift glucose tablets (which are hard to get in Canada). 

I tasted-tested all three. Cherry was by far my favourite. 

I raced Sebastien. I felt bad beating him. I mean I have pretty fresh legs and he's been running 40k a day for months now. Probably not a fair fight. 

If I could have described my 'ideal' day at a Friends for Life conference, Thursday would have been it. I got up early and headed down to the fitness centre. I ran on a treadmill for the first time in almost five years. Forty-five minutes later I was drenched in sweat, I had run almost 8k and I felt great. Well great except for the 5.5 with double down arrows the Rose started warning me about. A Larabar and a quick shower later, I felt better and headed down for breakfast. 

After breakfast, I went to a session about Autoimmunity, Celiac and Type 1 diabetes. The speaker was Alessio Fasano and he was brilliant. He was obviously a very intelligent researcher and he could have presented his information using highfaluting mumbo jumbo but he didn't. He presented the research with such wonderful simplicity and eccentric charm that he had me completely enthralled. I took five pages of notes, guffawed more than once and left, an hour later, with a brain full of knowledge about the factors that, when combined, can trigger an autoimmune response that leads to the development of Type 1 or celiac. 

I also headed across the hallway afterwards to buy his book and take part in the Celiac research study. 

Helping out the research project AND checking to see if I've developed celiac since the last time I was tested four years ago. 

After lunch, which I spent with some of the cool folks from Connecting in Motion and Riding on Insulin, I went to a session on the Bionic Pancreas presented by Edward Damiano. Ed's son was diagnosed at a very young age and Ed committed himself to creating a bionic pancreas on time for his son to go to college. His son is going to college in the fall of 2017. If you want to watch something really cool, check out this video on the research they did in 2013 at a summer camp. 

The project had stalled for the first time due to funding issues. They need to raise funds to finish building the bionic pancreas and, if they want to have it ready on time for to meet Ed's 2017 deadline, they need to raise the funds by September 1 2014. So if you want to help, please consider donating to the Bionic Challenge. 

I met a whole bunch of bloggers whose stories I read every morning while I have my breakfast. It turns out that some of them read Running on Carbs which feels a bit surreal. I went to the You Can Do This booth and added my personal motivational message to the choir. I made friends with the Dexcom folks and I got a copy of Kerri Sparling's new book. 

I spotted a whole bunch of people I had read about or that I know from their online presence that I haven't yet found the courage to walk up to. There are still two days so I may yet do so. 

I'll write about the second half of this great adventure on Monday. In the meantime, Happy Fourth of July to all of my new American friends. 

Friends for Life 2014

Yesterday I wrote about green bracelets. They are apparently a pretty big thing in the Type 1 world.

The first time I heard about them was when I read about people attending the Friends for Life Children With Diabetes conference in Orlando. They wrote about how emotional it was to be there and spot all the people wearing green bracelets.

People just like them who, while they might look different on the outside, shared the same faulty pancreas. People just like them who, no matter what their job, their background or their favourite tv show, all need to inject insulin just to stay alive.

People who wear that green bracelet understand like no one else what it feels like to be high. Or low. What it feels like to have to eat when you don't want to. They know all too well that sharp pain when the insulin needle hits a nerve. That burning sensation that we feel sometimes when the insulin is going in. The frustration we feel when we are judged by the word 'diabetes'.

For the past few years I have read about people's experiences at the Friends for Life conference.

This year, for the first time, I won't just be reading about it.

I'll be writing about it.

One week today, on Canada Day no less, I'll be en route to Orlando for the four-day conference. When I get there I'll be one of the people wearing that green bracelet. I'll be making conversation with complete strangers simply because they are wearing one too.

I will see, and maybe even meet, some of the Diabetes Online Community powerhouses whose blogs I read every day. I will see a few friends I have already met, on-line or in person.

And who knows, maybe someone there actually reads Running on Carbs and might think it's kinda cool that they get to met the Canadian girl who paints her nails before races, wears a Fitbit who writes blogs and who plays golf with a handicap of 47.

I'll bring my fountain pen to sign autographs just in case.

What I Will Talk About

This morning, around the time this blog is posted, I will be getting dressed in my hotel room in Kingston.

I will then be heading down to the restaurant for breakfast and caffeine.

I will then be heading into a conference room to hook up my laptop and, for the tenth time, make sure that the slideshow and the sound are working properly.

At 8am, people will start trickling in with their coffees in hand and, at 8:30am, I will be introduced to the crowd.

And then floor will be mine for an hour as I speak to a room full of diabetes professionals.

I will talk about myself and paint a picture to show that I am much much more than a diabetes label.

I will talk about how I was diagnosed and what the word "Type 1" meant to my 28-year old self.

I will talk about the journey that I have been on since my diabetes diagnosis and that, no matter how challenging diabetes can be, it always seems to have a role to play in making my life better.

I will talk about how, any goal, no matter how crazy it may seem at the start, is manageable when broken down into bite-sized pieces.

But more importantly, I will talk about the Diabetes Online Community. I will talk about how I discovered it. I will talk about how it, and you, made such a difference both in my daily life as well as in how I manage fitness and health. I will talk about how important the DOC is as a way to provide support and encouragement to people in the time between our six-month appointments. When we are dealing with all of the diabetes stuff on our own. When we don't always have people in our lives who understand.

I will talk about how taking even a few extra minutes to get to know who a patient is can make a world of difference in terms of how care is provided.

I will encourage them to explore the DOC and encourage them to talk to the people they support about it.

And hopefully, by 9:30am, I will have made a bit of difference in the world.

The Presentation

As promised, today is the day I tell you how the presentation went. The one I did on Tuesday night in front of a group of diabetes educators.

It went really really. Super dee duper well. I couldn't have asked for better kinda well.

The evening event consisted of three presentations. The first one was done by two ladies from OneTouch and they were presenting the OneTouch Verio meter. Not having one of these, I was pretty excited to find one in my bag of goodies. It's a pretty neat meter in that it can identify and track blood glucose trends for people who test their blood sugar a lot (ie. me). Apparently, once I have been using it for a while, it will beep when it notices things like my blood sugar is usually high two hours after lunch or it's low around 4am. That kinda thing. Plus it lights up, has a big screen, a rechargeable battery AND it kinda looks like a baby iPod if you squint just so. Sold!

I was up next. I had arrived early to make sure that my laptop connected to the projector and the speakers. All I had to do was walk to the front and start talking. I did just that. I started off by thanking everyone there for coming and for dedicating their time to helping people like me.

I told my diagnosis story and heard gasps when I told them how I was misdiagnosed as a type two. How surreal and crazy hard it is to have to learn to give yourself that first injection and how scary it is to go home armed with the ability to read a nutrition label and not much else.

I told my running story. They clapped when I said I ran my first half marathon. They laughed at how hard it was for me to run for one minute and they nodded in approval when I told them about the size of my running belt and how many emergency supplies I carried.

I told them how I typed the words "type 1 diabetes" and "runner" into Google and discovered my first diabetes blog (hi Scully - you're now famous!). I told them how cool it was to meet my first type 1 in the wild and how I decided to write my own blog.

I gave a few examples of the things that the DOC taught me. Like how to waterproof my pump for long runs and what things like SWAGing and type awesome mean. They loved SWAGing! I talked about how important the DOC community is to people and then I played a video that Sara sent me. Remember the video she made after people sent in photos of themselves wearing glasses and insulin pumps? And how the video was made for a little girl who didn't want to have to wear glasses AND an insulin pump?

People cried.

And clapped.

And promised to check out my blog and click on other blogs, and learn about this Dee Oh See I was talking about.

They asked me questions like "how can we support people better" and I told them what Jeff (hi Jeff!) asked me to say. I said that too much pressure is put on people to reach the magic A1C number. Reaching this target over and over again, or even at all, is just not possible for most people. It leads to depression, stress and, sometimes, people risking too many lows just to get a better A1C. They nodded.

I told them that we are more than diabetes and that not everything that happens to us is because of diabetes. We can get real people sick too (they liked that term as well) and maybe our sore hand, stress fracture or whatever has nothing to do with diabetes at all.

I said don't tell us all the bad stuff that can happen to us - we know already. Treat us like people. Take the time to get to know us as more than just a disease. And teach people about the DOC so that they can get support during the 8,754 hours a year that we are not at the doctor's office.

It was a wonderful night. I loved watching the room light up, nod, gasp and cry as I told my story our story. I told everyone I could that I would be happy to talk to anyone about diabetes. I'd be happy to teach a group of professionals or Type 1s about the DOC and how to access it.

By the next morning, two people from the audience had already left comments on my blog. That alone means I made a difference to more than one person.

yay!

Thanks you guys for your support, encouragement and words of wisdom. I felt like I was talking for all of us and I think I may have done you proud.

Perfect Strangers

I have a friend that I've never met.

I have never talked to him on the phone.

I probably couldn't pick him out of a lineup.

If he walked up to me and said hello, I'd probably stare at him wondering who he was.

Still, I consider him a friend.

His name is Jeff.

He has Type 1 diabetes - just like me.

He runs, he cycles, he swims - just like me.

He takes pictures, likes to travel, and reads lots of books - just like me.

He blogs about life - the good, the bad and the diabetic - just like me.

Tomorrow, he will be flying from Boston and spending the weekend in Southern Ontario.

He's going to run Around the Bay, a race that's, ironically, 'Older than Boston'.

And I get to meet him in person.

Yay!

Day 7: What I've Learned

I learned that I not nearly as disciplined with my diabetes as I should be.

I learned that I am way more disciplined with my diabetes than I need to be.

I learned that I handle challenges really well.

I learned that I could be better at handling challenges.

I learned that I have a very positive outlook.

I learned that I need to lighten up a bit.

I learned that there are a lot of people out there just like me.

I learned that I am absolutely unique.

I learned that, when it comes right down to it, diabetes is a very individual disease.

I learned that I am not alone.

The DOC (diabetes online community) is made up of people who come together for support, for knowledge, for encouragement and friendship.  Diabetes is what we have in common.  And sometimes that's all we have in common.  People I might never connect with in person, I connect with in the DOC.  Because they get me the way most people don't.  And that, my friends, is priceless.

Thank you Karen for organizing this fabulous week of blogging.  I feel so honoured to have been part of it and cannot wait to do it all again next year.