Thursday, April 30, 2015

The Face of Hope



This is my face approximately 20 seconds before bursting in to tears.

Relief.
Happiness. Determination. Hope.
Fear.
Thankfulness.

I stood with Derek Rapp from JDRFI and chatted.He pulled this small band-aid like piece from  his pocket and offered me to hold it.

It was surreal. This device would fix me. It could fix me. IT WILL FIX ME.




It's so small, I fingered its rounded edges as he talked to me about how important caring is, about diabetes, and about my job. I held on to it, and imagined walking around without a pump, or a bag or glucose tabs.

I imagined putting my running shoes on just because the mood hit me, not because of a roller coaster of diabetes.

Everything came crashing in and my eyes welled up. We snapped the photo and I cried.

Everything came out and Derek wrapped me in a hug and just said "thank you for caring."

When I fundraise now, I am selling hope. More aptly: I am selling the idea of hope.

This is a better future. You may not have diabetes or have loved ones with diabetes. But wouldn't you feel better if we created a world where the burden of a lifelong chronic illness was less?

This was my first moment in my history with diabetes work that I truly felt an end may be in sight. It was a very raw and overwhelming feeling.

I can't do it without you.

Donate, donate, donate.


We can't create this world free of the burden of diabetes without our community.

Please, take a moment and reflect on what this would mean to you, your friends, your loved ones.

It's one less scary thing to face in the future for you.

It's one more thing for me to live for.

If you can not donate, join me. Join my walk team, make your own team, contact your JDRF chapter.

It took a village to get here. It will take many more to keep going.

Thursday, April 16, 2015

#dayofdiabetes Recap

Hi all!

Yesterday I took part in an awesome advocacy movement called #dayofdiabetes. It gives people a glimpse in to what daily life with diabetes can be like. It's also interesting following everybody else's days to see how dramatically different we can all be in our personal care and treatment.

You can check  out my storyfied page right here.

Let me know your thoughts in the comments below.

Thanks for following!

Monday, April 13, 2015

Constant Advocate

Did you know the French word for Avocado is Avocat but also the French word for lawyer is Avocat?

Here is a hard core avocado (pic taken from: http://anthropomorphicavocado.com/)



Well now you do. I thought of that as I mis-spelled advocate in the title.

Anyway, on with the news.

The past week has been a bit trying in Nova Scotia. We had our 2015/2016 budget released and it made a lot of drastic and painful cuts in programs and services that our province needs. When I try and remove my feelings from this budget, and try and objectively understand the necessity to bring our failing province out of debt some of them make sense.

A little background for you, and yes this does have to do with diabetes I swear.

Nova Scotia is one of the poorest provinces in Canada. We have one of the highest aging populations, our emigration vs immigration for the young and talented is absolutely heartbreakingly staggering. We have the highest instances of cancer in Canada, the second highest of diabetes. We have the 4th highest rate of unemployment. We have the highest taxes in the country, with a whopping sales tax of 15% and the personal tax rate can go as high as 50%!

As you can tell things are pretty grim. We aren't exactly booming, our population is ageing and our healthcare dollars are generally....well mismanaged.

There are fewer and fewer people like me: well-educated, gainfully employed and enjoying it, owning a home and paying down student debt. When when I say fewer and fewer...I mean I am in a severe minority.

I won't get in to why I think that is, I will just say that it is a fact that has become a trope in Nova Scotia life.

ANYWAY, the budget made a lot of cuts that to me don't make sense (two that had me riled are the film tax credit and unfreezing tuition costs). But I have to have faith that our government wouldn't do such drastic things if it didn't have a plan to bring wealth back to us. Maybe?

But inside the dreary, dismal display for the budget lays a nugget of progress.

The Nova Scotia Government announced it will up the age limit of the funding for the insulin pump program from 19-25! This has been my personal advocacy story for quite some time. The province needs to understand the life-changing effects this can have on people with T1D. I know of two people who have moved provinces to get this coverage.

Other provinces are covering all pumps for all ages and there is no reason we are so far behind them. The announcement was a shocker and a great step in the right direction for our province. With the finances in such a difficult position, it's amazing we see a tiny step in the right direction.

It may have been just saving face, it may have been something more, but at a luncheon a few months ago the organizer decided to sit me next to our minister of health. The poor guy..ha ha! We had a great chat about the state of diabetes care, and its epidemic level in Nova Scotia. We talked about how I think we can make small changes in our wording and how we treat the public with diabetes, and we had a long chat about the insulin pump program. I taught him how to carb count my lunch and showed him my CGM, blood test and how I bolused.He agreed we need to do more. I am so proud to be a constant advocate. I am so glad that under the darkness that the province is currently in, we see a little light.

Saturday, April 11, 2015

25: A Damn Good Place To Be

This morning I woke up like every other morning.

I laid in bed for a few minutes soaking in that I was, in fact, alive. I breathed and was breathing normally, the morning light was just starting to filter through the cracks in my blinds. My dog was snoring lightly at my feet, my fiancé was breathing deeply at my back.

Saturdays are usually pretty laid back for me. I get up, go to the market for some veggies and flowers and leisurely take in the morning. I prefer to do it solo, I get a lot of thinking done wandering through fresh vegetable stands and baked goods with a coffee in hand.

The sticky night stuck to my neck, elbows and knees. Spring is finally here (maybe) and the warm air, and thick fog show it.

I rolled over to check my phone and my insulin pump buzzed. Low battery.

As I went in the bathroom and splashed water over my face, last night's hazy memories caught up to me. I changed my infusion set at 1:30 am after ripping one out in my sleep. As I came to, I remembered the squeal of the high blood sugar alert  invading my deepest sleep. My pump laying on the floor too far away from me.

I remember fumbling in the supply closet for everything I need for a site change, while trying not to wake the others.

I remember the needle piercing my skin on my right arm and the slight twinge of annoyance that this is what I was doing while everyone else in the world was seemingly asleep.

This morning I woke up like every other morning, but it wasn't.

Today marks 25 years living with type one diabetes.

Over the past 25 years, there have been some advances we can  truly be proud of. We are pushing for better treatment in the school systems for littles who are living this life, better treatment in the workplace, better treatment options...trying to get insulin in the hands of people who can not afford to stay alive-at no fault of their own.

Often messages get muddled, there are people who fight over the dumbest things like numbers and definitions, and who's experiences trump others.

I have taken on the role of a patient advocate because I think that's where my strength is. In my professional life I work for the world's leading funder of research for a cure for type one diabetes. Diabetes is my life-and I made it that way. I want to give a voice to those who don't have one, or have the desire to have one.

I do what I do for me, and for others. Not because this is the worst disease in the world, but because it is A disease in the world. It is one that affects millions of people worldwide. No matter the type or how to treat it, there is still just too much unknown about it for me, personally, to stand aside and not take part in pushing.

So I have lived 25 years with type one diabetes. What has it done for me? It has shaped my career, my future goals and my personal circle all for the better.

It has taken minutes, hours, even days from me in self-care.

There are, and there always will be times in life with a chronic illness that I am sad, angry and annoyed. But I live my life trying not to let those moments win over the ones where I feel overjoyed, happy and fulfilled.

Type One Diabetes has made me a fighter. Maybe I would have been a fighter if my immune system stayed the course 25 years ago, maybe not. But I stand up for what I believe in, I push for what I want and I will defend every one's right to do so.

My personal goal, over the past few years, and the coming years is to help people living with chronic illness feel supported and well mentally while the physical illnesses are treated by medical doctors. I guess I can say out loud that I am starting to get the wheels in motion to focus on mental well-being in transition care. I don't know where it will take me, but I am excited to find out.

And if it wasn't for my pancreas calling it quits 25 years ago, I probably wouldn't be where I am right now.

And this is a damn good place to be.

I guess I have come out of blogging hibernation.