D-Blog Week Day 3 - Clean it Out

Today's topic challenges us to look for diabetes-related things that we are holding on to. It might be physical belongings or it might be emotional stuff that we can't seem to let go of. What are these things, why are we hanging on to them and what are we going to do about them?

Yesterday I struggled a bit with the blog topic and today I seem to be doing the same thing. 

In a physical sense, I really don't hang on to too much diabetes stuff. I have my diabetes cupboard where my supplies are stashed and there is usually a pretty good supply stashed. But I use it all and I feel better when there are weeks of back up stuff stashed in there because one just never knows when that pesky zombie apocalypse is going to hit. 

But other than having a good supply of things I use, I really don't have a lot of extra stuff kicking around for no reason. 

Oh wait, that might not be true. 

Actually, when I think about it, I may still have every single glucometer I have ever used tucked away on the bottom shelf of that diabetes cupboard. 

I may also have boxes of lancets for each of these devices that are still 3/4 full because, let's be honest here, you don't go through too many lancets when you only change them one per season. 

Oh dear. Now that I think about it, I may still have all of the start-up information for my Medtronic pump. The pump I used to use before I switched to Animas several years ago. 

And, since we're being honest here, I may also have gotten into the habit of saving the little pump plug thingie that I use when I am unhooking my pump for a shower. I keep one in the bathroom, two in my toiletry bag for when I'm traveling and a few in my swim bag for the pool. And then, for about 5 years, I used to toss every new one I got into a plastic bag in my diabetes cupboard, just in case. And when you consider that I get a new plug thingie every four days when I put in a new site, I have a lot of them. 

I'm proud to stay that, in the last year or so, I have stopped saving them. But I did post this picture a few years ago and it might be worth looking at it again. 

By the way, this is one of those gimmicky wine glasses that holds an entire bottle of wine in it. There are a lot of those plug thingies in there. 

Ok, so maybe I really do need to take a look at my diabetes cupboard and toss a few things out. 

As for emotional baggage that I am dragging around, since we are all being honest here, there is one thing that does make me kinda crazy. 

I am finding it increasingly difficult to respond respectfully to people who say things about diabetes (be it T1 or T2) that are ignorant or hurtful. Most of the time I am able to hold myself back because I know the person and I know that they are not saying these things to be hurtful, they just really don't understand. So instead of snapping at them, I try to patiently educate so that, hopefully, the next time they think something negative about diabetes, they hear my voice in their head saying "don't judge. Just don't. You have no idea and what you just said is very hurtful. If you're curious, ask the person. But for heaven's sake, don't judge." 

But I have to say that, after 12 years of this, there are days when it's really difficult to put on my nice girl pants...because what I really want to do is give them a good smack and say "oh for heaven's sakes, you have no idea what you're talking about, you are spreading negativity and you sound incredibly ignorant. So how about you stop spewing inaccurate information and making things worse for everyone."

Sigh. 

But you and I know that the second response does not make the world a better place. Only the first one does. 

And I'm all about making the world a better place. 

So while I am getting increasingly frustrated by the lack of accurate diabetes knowledge out there, I am also committed to changing that when I can. 

But let me tell you, there are days when I want to toss all of my pump plug thingies out and check to see if that wine glass really does hold an entire bottle. 

D-Blog Week Day 2 - Keep it to Yourself

For this second day of D-Blog week we were challenged to talk about some of the aspects of diabetes that we keep private. Those things that we don't blog about and those things we don't tell our family or our friends about.

This topic was a tough one for me because, to be honest, I had trouble thinking of something to write about.

My immediate thought was that I don't really keep diabetes-related things private. There are plenty of parts of my life that I never blog about but I don't tend to pull any punches when it comes to diabetes. The good the bad and the ugly bits of diabetes all take turns starring in my blog.

Then I told myself to think harder. That there must be something I don't share, some aspect about diabetes that, consciously or not, I don't share. I told myself that I just need to be really honest with myself and I'll find something.

I'm honest about my blood sugars. I write about the tough days, the emotional days, the easy days. I write about the scary moments and I write about the inspiring ones. I talk about the times when I'm angry at the diabetes gods and the times when we are getting along and can go out for drinks together.

Then it hit me.

I don't whine about diabetes.

I resolutely refuse to complain about anything to do with diabetes.

I think it's important to share the challenges but I try very hard to do it in either an entertaining or an informative way. I want others to learn from my adventures and I want people to find comfort in knowing that someone else out there gets it.

But I have no patience for people who complain for the sake of complaining. Complaining rarely makes anyone feel better and usually ends up dragging other people down. Complaining feels destructive rather than constructive.

So, no matter how I am feeling on any given day, about any diabetes-related situation, I won't complain about it, on my blog or to the people I care about.

Even on the toughest diabetes day, when the roller-coaster seems to be running non-stop, there is always something I can do to make it better. So while I might drop the odd f-bomb, I refuse to wallow and I refuse to stop trying.

Saturday in Listowel

Tomorrow morning, at the crack of dawn, I will be two plus hours from home in a small town called Listowel.

Coffee in one hand, my laptop in the other, I will be speaking to a roomful of ladies who have also been on journeys, big and small, that eventually brought them together for a workshop called Living with Type 1 Diabetes from a Women’s Perspective.

I will be one of three speakers at this event and I get to talk about my own journey. I get to talk about my discovery of running, my love of triathlon, my refusal to say no to things just because they are scary and the strength and support I get from being part of the diabetes online community.

I get to meet new people and exchange a few laughs and probably a few tears. Perhaps even a few emails.

Even more fun is that, on my drive home, I’m taking a wee detour to meet up with a friend for coffee. She is someone I met at my last presentation in November and with whom I’ve been exchanging emails ever since. She’s relatively new to the type 1 diabetes world and I’m going to hear all about her new insulin pump and how things are going in her life.

After that I’m going to drive home, exhausted but very grateful for all the wonderful things that diabetes has given me.

Because, let’s be honest, there is not one part of Saturday that would happen if my pancreas hadn’t decided to take an early retirement. And I’m guessing Saturday is going to be a pretty amazing day.

So thank you diabetes for that.

A Waste of a Good Spoon

A colleague of mine shared an article the other day about spoons. 

Click here for the link to the full article (which is worth a read) but I'll give the Coles notes version (for those of you who remember Coles notes).

In the story, a conversation happens between two friends, one of whom has lupus. The girl who has lupus is asked by her friend what it's like to have lupus. The friend is not looking for a scientific answer, she is looking for what it's really like to live with lupus every day.

So the girl gives her friend 12 spoons. And she tells her that these are all the spoons she has for the day. And that every time she does something (like take a shower, or make lunch or meet a friend for coffee) it will cost her a spoon. She then makes her friend talk through an imaginary day and her friend quickly realizes how much it 'costs' to simply get out of bed, shower, get dressed and have breakfast. She was down to 6 spoons before she even left the house.

It was a pretty powerful way to describe the decisions and the compromises a person has to make when, for whatever reason be it physical or emotional, they struggle to do what most of us do without a second though.

I read the article and it really got me thinking. After a while, I sent a response back my response. I borrowed the spoon analogy but tweaked it a bit to see if I could use it to describe diabetes.

I said that living with type 1 diabetes is like carrying 10 spoons around all the time.

Each spoon represents a question that needs to be answered. And all 10 spoons (or questions) must be answered before you move on to the next activity in your day be it getting into the car to drive to work, having lunch, going to an afternoon job, or even just going to bed for the night.

1. What is your blood sugar?
2. Is it going up or going down?
3. Do you still have insulin in your system from your last bolus?
4. Have you eaten something recently that has carbs?
5. Have you done any activity today that might affect your numbers?
6. Are you going to do any activity later that might affect your numbers?
7. Are there any other variables that might affect that number? (illness, what phase in your monthly cycle you are in, stress, extra sedentary day, bad sleep the night before, not enough water to drink etc etc).
8. Do you need to do anything (take insulin, eat something, drink water, lower basal insulin) before undertaking whatever thing you're about to do?
9. Do you have enough insulin left in your pump to get you through to the next activity with enough left in reserve in case you need it?
10. Do you have emergency carbs with you in case you answered any of the above incorrectly or in case the diabetes gods are feeling frisky?

Once these questions are answered, you can move on to the next activity in your day.

My colleague responded with a rather shocked-sounding email. "I had no idea it was that complicated". To which I responded "I think that's why I don't get worked up about most things. It's just not worth wasting a spoon."

Not worth wasting a spoon.

What an interesting way to look at your day.

If you only have so many spoons in a day what would YOU do with them?

What activities would you stop doing because, when it comes right down to it, they really are a waste of a spoon?

And which activities would you make sure to prioritize because they are totally worth the cost?

And since we have no way of knowing how many spoons other people get for their day, maybe we could cut them a little slack sometimes eh?

On a funny note, I went online to see if I could find a funny picture of a spoon to include in this post. I found two that I really enjoyed. Hope you like them too!

A Bizarre Evening with Dear Diabetes

There are plenty of adjectives that can be used to describe diabetes.

It's not often that I would choose the word 'bizarre' but the other night, that's exactly how I would describe what happened. 

I had a very tight window between the end of my workday (5pm) and my CoreFit class (5:30pm). I had to drive home, change and then drive across town in those precious 30 minutes. 

Problem number one: I had gone to work with what I thought was enough insulin but ended up being down to 1 unit in my pump at 5pm. Not enough to get me until 7pm when I would be home again. 

Solution? I turned my basal rate down to 10% for one hour. I figured I was working out anyway so I wouldn't go too high. Plus it was only one hour so I could just take a bit of extra insulin with dinner to make up for that difference. 

It worked. My pump didn't alarm during class to tell me that it was out of insulin. In fact, it waited until I walked into my kitchen before making a peep. Unfortunately, just as I walked into my kitchen, it alarmed for three things, one immediately after the other. 

Alarm 1: pump is out of insulin

Alarm 2: blood sugar is above 10.0

Alarm 3: blood sugar is rising quickly (double arrows up)

Alright, the blood sugar spike was a little dramatic but I figured I'd be fine as soon as I changed my pump and took an extra large dinner dose. 

Problem number two: I removed my infusion site. That's the part of the pump that is stuck to my skin like a bandage and there is a tiny plastic tube inserted under my skin so the insulin has a way to get into my body. Usually I peel back the infusion site and either nothing happens or a small droplet of insulin leaks out. This usually happens if I change my pump too soon after taking a dose of insulin.

Never in my life have I removed the infusion site and seen blood gush out. And by gush I mean a spurt followed by an alarming amount of blood leaking down my abdomen. I grabbed a nearly tissue and pressed it hard against my side. Doug passed me the box and I added about five more to the pile. I soaked through all of them. More tissue. More pressure. It was a good five minutes before the bleeding stopped to a trickle and a few more before I felt confident that I could put a bandage on and not ruin my clothes. 

In the meantime my pump kept alarming. The no insulin alarm and the blood sugar rising too quickly alarm. I was now 14.8 and still double arrows up. 

Once the gushing stopped, I put a bandage on and then proceeded to refill my pump and put in a new infusion site. I bolused 1 unit for dinner (it was pretty low-carb that day) and 5 units for my spiking sugar. 

By the time we were finished dinner I was 20.9 and still climbing.

It took me three more insulin doses and several hours to climb back down below 10.0 resulting in a rough night and a missed morning run. 

None of it makes any sense to me. 

One hour of reduced insulin is not enough to cause that kind of spike. My numbers were fine at 5:30pm so it's not like I was high to begin with. My CoreFit classes usually cause a dramatic drop in sugars, not a spike. 

And what the eff was up with that gusher? It's like I had hit an artery and the only thing holding in the flood was a tiny plastic tube. Remove the tube and, well, it looked like a scene from Dexter. 

At the end of the day I am grateful that my site didn't decide to gush before I pulled it out. Like in the middle of CoreFit class or during my work presentation. How dramatic would that have been as a bright red mark slowly worked its way across my shirt while I stood in front of a group of horrified onlookers completely oblivious?

I Was Never Told

I remember when I was first diagnosed with diabetes and trying to come to terms with what it all meant. Trying to figure things out. Trying to sort through the information that I was given by supportive, well-meaning diabetes educators who, more often than not, did not have diabetes themselves.

I learned a bit from the people who were there to teach me. But I learned the most from just living the experience. I learned. I adopted that knowledge into my new reality and then forgot that I didn't always know it.

Like learning what a low feels like.

I was told that low blood sugars feel like this:

I was not told a bunch of other stuff and ended up having to figure it out on my own:

• I was not told that low blood sugars can happen when you're full from dinner. And you will have to gag down food when you really don't want to. 
• I was not told that they often happen at the worst time. I was not told that I might have a dramatic low while in the shower and would have to get out with shampoo still in my hair, stumble to the bedroom for juice and then sit on the side of the bath dripping wet for ten minutes before I could stop shaking enough to rinse my hair. I was not told that lows can happen in the middle of presentations at work. While making love. In the middle of eating lunch (I'm already eating for heaven's sake! Piss off!)
• I was not told that those fast-acting carbs that you need during a low are rarely healthy and that, if you have too many lows you could actually put on weight because of all the empty calories you take in. I mean really, no weight maintenance program in the world says you should have 2-3 juice boxes per day.  
• I was not told that all the doctors and nurses I met would put the fear of having complications first and foremost in my mind. And that this new-found fear would make it seem like a good idea to have lots of lows if it meant avoiding highs. And that lows are really not good either.
• I was not told that lows can happen no matter how hard you try not to have them - and that you are not a bad person or an incompetent diabetic if you have them.  

 I was not told about the ignorance I would have to face. From people I work with, or golf with, or meet at the gym. I was not told that real life doctors and nurses would ask me questions like "is your diabetes well controlled" and that it would take me several years to go from feeling guilty when asked the question to becoming an advocate and explaining patiently why this question was not at all a question they should be asking patients. And that I would have to explain it again the following year when the same doctor asks me at my annual exam. And the year after that.

I was told how to count carbs and inject insulin and treat lows. I was not told that doing all of the stuff they told me to the absolute best of my ability would not produce results anywhere near what they actually wanted to see. That there is a difference between textbook diabetes and real life diabetes. 

I was not told that there were other people like me out there. And that it might be a good idea to find some. Because they will understand all of the above.

I learned all of this on my own. In hindsight, that is probably best. I do better when I learn from experience. And I've certainly done better with every year that has gone by as I add more and more to my real-life experience purse.

But I do know that there are many people out there who may not figure this stuff out for themselves. Who may do everything they are told to do and then not understand that it is not their fault when the wheels still fall off the cart on a regular basis. Who may feel personally responsible for every low. For every high. For every up and down.

Those are the things that make me feel like we really need to take a good look at how support is provided to people.

Because while there are times when I think I am doing well because of the support I have received, more often I think I am doing well in spite of it.

The Diabetes Gods Have Gone to Florida

I probably should not say this out loud. And I really shouldn't write it in a blog.

But I'm going to anyway.

Diabetes management has been feeling rather easy lately.

Like remembering to brush my teeth or doing laundry kinda easy. The kind of thing you have to do but it's so routine that you just do it without really giving it much thought.

I'm not sure what is responsible for this little diabetes management nirvana but I'm pretty sure it's not just one thing.

It's probably the fact that I have been exercising regularly for weeks now, never missing more than one day in a row. Exercise has always been key in keeping the BG numbers down.

It's probably the fact that I have been a little more careful with what I eat.

It's probably the fact that it's January in Canada and the diabetes gods have up and left for Florida to enjoy a few weeks of sunshine and golf.

Whatever the reason(s), it's been nice.

It's been nice to have fairly stable numbers.

It's nice to bolus for breakfast and watch my blood sugar do what I think it will do.

It's nice to correct a high blood sugar and watch it float down nicely to a reasonable number rather than crash land into a major low.

It's nice to have my bedside fig newton stash go stale before I finish them because I have not been having night time lows in a while. And, when I do dip below 4.0, I can take two Dex 4s and it seems to be enough to get me  back in range.

Another trick that I've been using lately is one that I never made much use of before. Temp basals. Instead of stopping lows that I know are coming with food, I have started preventing them with a strategic lowering of my basal insulin.

In other words, if I'm heading to bed and notice that my blood sugar is on a slow trend downward AND I just came back from CoreFit, I can pretty much guarantee a low in a few hours. I used to deal with this by eating an extra snack before bed.

Now, I turn down my insulin by 20-30% for a few hours.

It works. No high. No low. No pre-bed snack that I don't want to eat because I'm still full from dinner.

Diabetes is a disease of subtleties. If you try to deal with it with a heavy hand, it fights back with a heavier one. If you are gentle and kind with it, it usually responds in kind.

(My guess is that the diabetes gods will jump on the first plane back from Florida as soon as they read this post and  I will be writing another blog in a week or so about the horrors of blood sugar roller coasters. Still though, it's important to celebrate the diabetes victories as they come. And the last few weeks have definitely been victorious) 

Play the Course the Way You Find it

Sunday night we were watching the Canada Cup of Curling final. Team Jacobs versus Team McEwen. Team Jacobs was predicted to win but they were struggling a bit.

The announcers, bless them, were trying to figure out their problem.

Well, they didn't play yesterday so that could be it. They lost touch with the ice.

Plus the ice is different during the final game because there are fewer teams playing which affects the ice temperature.

And there are more people in the audience which heats up the building, also affecting the ice temperature.

Oh, and they are convinced that one of their rocks is a 'cutter' meaning that it doesn't rotate the way it should.

I turned to Doug and announced "curling is just like diabetes!".

"How so?" he asked.

"What worked yesterday probably won't work today and there are so many variables that can affect the game that it's impossible to be 'perfect' for more than a few moments."

"Diabetes is like golf too" countered Doug. "Every day the course is different. And the only way to cope is to play the course the way you find it. Not the way you remember it from the day before."

"Wow, I should write a blog about this!" I said.

"Well, fire up your laptop and get on it" replied Doug.

"Oh, and I have one more nugget of wisdom that you could use to wrap up your blog" he said with a grin.

"It's the same ice for both teams."

"Thanks baby" I said as I fired up my laptop.

Diabetes - What it Feels Like on the Inside (a repost)

A little over a year ago I wrote a post trying to explain what diabetes feels like to me. I reread it yesterday and decided that it's worth republishing. So here it is from November 2013 - mere days before I starting using Dexter. I wonder if I would have written it differently if I was already CGM'ing?

_____________________
It's always the same and yet it's always different.

Sometimes it starts with a dry throat and a gentle headache right between my eyes. The kind that makes me squint a bit and brings out those frown lines that I get when I'm thinking hard about something.

Sometimes it starts with a yawn. And then another one. And then another one. I usually start slouching in my chair a bit or get up to make some tea in an effort to wake up.

Sometimes my elbows start to feel a little less bendy. Like the fluid in my joints is starting to solidify.

Sometimes I get a funny taste in my mouth.

Sometimes the symptoms stop there. Sometimes they get worse and my dry throat becomes a crushing thirst, my gentle headache starts to pound, my yawns flow into each other and my joints all begin to join the stiffening chorus. Sometimes my hands start to ache.

Sometimes I clue in quickly. Other times I don't.

I always clue in eventually and grab my glucometer - knowing I'm going to see 16+ on the screen.

Sometimes my lips and tongue start to tingle just a bit. The way they feel when the freezing is coming out after a trip to the dentist.

Sometimes my heart starts beating a little faster and feels like a fluttering bird in my chest.

Sometimes I start to yawn. And yawn. And yawn. I go make a cup of green tea in an effort to wake up a bit.

Sometimes my limbs start to feel light, like gravity was turned down a notch. I become a little more awkward and clumsy than usual.

Sometimes little things annoy me. Things that didn't annoy me even a minute before and things that don't normally annoy me...ever.

Sometimes I clue in quickly. Sometimes I don't.

When I don't, my lips and tongue start tingling a lot - to the point where I can hardly feel them. My heart beat gets crazier and I start to sweat. It comes on fast and furious at that point and I can easily sweat through a hoodie and a jacket as well as my jeans in minutes. The yawns progress to the point where I can hardly get a sentence out between them. The world starts to spin. I need to sit down.

What I really need to do is grab some juice.

Diabetes is a textbook disease made up of numbers. Dosages. Ratios. Units. Time.

Diabetes is often summarized on a piece a paper with pictures of people drinking water or looking pale and shaky. It comes with warnings that a person is in one of the two ends of the blood sugar spectrum and helpful suggestions about what to do.

Diabetes is all of those things. And it's none of those things.

Diabetes is the horror of waking up drenched in sweat and hardly able to reach the Dex 4s on your bedside table and wondering, through the haze, "what if I hadn't woken up?"

Diabetes is the fear of going back to sleep in case it happens again. And it's the feeling of isolation when you get to the pool the next morning, tired and shaken, and no one has any idea what you've been through and how scared you were...and how important it was to get up early anyway so diabetes doesn't win.

Diabetes is the horror of struggling to control a blood sugar of 25 with dose after dose of insulin and feeling that every minute you spend up in the clouds is another minute that diabetes is doing damage to your body. The only body you have. And diabetes is wondering if this high will be the high that puts me over the edge to the land of no return.

Diabetes is the fear of going low 1500m from shore during a triathlon swim and yet still getting in the water because the fear of letting diabetes dictate your life is greater than the fear of an open-water low.

Diabetes is squinting at the tiny air bubbles in your insulin tube, carefully priming to get them out, and then wondering if anyone will do that for you if your eyesight fails and you are no longer able to do that for yourself one day.

Diabetes is listening to people talk about other people with diabetes and all the horrible things happening to them...and refusing to let that stop you from trying to be healthy even though it's just so easy to give up and hand diabetes the reigns.

Diabetes is about doing the same thing, day after day after day, knowing it's only going to work half the time.

Diabetes is about finding a way to be proud of the fact that you test your blood sugar in public and have tubes coming out of you as you walk around the change room after your swim. Because the alternative is hiding and that's not an alternative you're willing to entertain.

Diabetes is all numbers and ratios and signs and symptoms on the outside.

On the inside, it's a never-ending battle between fear and courage. Between motivation and depression. Between the will to fight and the urge to throw in the towel.

Sometimes I'm the one on the left. Sometimes I'm the one on the right. 

Depends on the day. 

Women with Type 1 Diabetes

On Saturday morning I was up and on the highway before the sun came up. I was in Cambridge Ontario before 8am and had my laptop and speakers connected before 8:15am.

By 9am, the room was full of women with type 1 diabetes. Some had their pumps out for all to see. Others showed no visible sign of a pancreas malfunction but the fact that they were there bright and early on a Saturday morning leads one to assume...

I wasn't scheduled to speak until just before lunch so I listened to the speakers who went before me. All medical professionals. All with important and helpful information geared specifically for women. Pregnancy, stress, menstruation, menopause, exercise and all sorts of other fun things designed to wreak havoc on blood sugar numbers.

When it was my turn to speak, I told my story. I talked about being a person first. A person with diabetes second. I talked about the emotional roller coaster that comes with being diagnosed as an adult, the challenge of trying to go back to the life I had before diagnosis and the day that changed everything. The day that I decided to become a runner.

I made sure that I talked about how running, or any other kind of exercise, is possible if you break it down into small and manageable steps. I made sure I talked about how I was not some super-athlete. That I was just a regular girl who started small and build my strength to the point where I could stand up in front of a room full of people and announce that I ran half-marathons and did triathlons for fun. I made sure I talked about the Diabetes Online Community and the difference that finding that community made.

Afterwards, several women came up to speak with me.

I met a woman who was diagnosed at 12. She is 60 now meaning that she's had type 1 for 48 years. She looked fabulous and strong and she talked about how important it was to be tough when facing type 1 diabetes. She asked me if I would come speak to the people with type 1 in her area. I accepted immediately.

I met a woman who had been diagnosed just a few years ago. They caught it early enough that she didn't have to go on a full-blown insulin regime right away. Instead, she is living with the knowledge that her beta cells are slowly shutting down and that she will find herself on a pump in the not too distant future. She and I talked about the emotional challenge of being diagnosed as an adult. We can remember what our lives were like before. Our partners and our families remember the way we were before. And our eyes welled up as we both found solace in the fact that we understood what the other person was going through. We are no longer the people we were before. She is still mourning that loss and I tried to find the words to tell her that it would be ok. And that she would find the courage to face the road ahead and come out stronger on the other side.

I met another women diagnosed as an adult who said she was shocked when I started talking and she started crying. "I didn't realize until today how important it was for me to know that there are people out there who really understand what I'm going through."

I met a women who had a baby not that long ago. She talked about how she too was misdiagnosed in the beginning. I was told I had type 2. She was told she had depression and prescribed anti-depressants instead of insulin.

It was an emotional event for me and for many of the women there. Not sad emotional though. Good emotional. The kind where you leave feeling better for having had the experience.

World Diabetes Day

Happy Friday.

Happy World Diabetes Day.

Happy Omigod Sebastien Made it all the Way Across Canada Day.

A man with an insulin pump, a wicked french accent and a dream bigger than all of us. Run across Canada to raise awareness about type 1 diabetes and hopefully inspire a few folks along the way.

Day one: February 2 2014 - Sebastien left Cape Spear in the coldest Canadian winter in 15 years and headed west. 

Through the maritimes and Québec and Ontario

Through the prairies

Towards the Rockies 

Up one side...

...and down the other.

Sébastien set a lofty goal to run across Canada. 

To run 7500km. 

To run the equivalent of 180 marathons. 

And to finish in Vancouver on World Diabetes Day. Which just happens to be today.

Guess where he is?

Yep, Vancouver. Five kilometres from the finish line.

A bunch of my friends are out there ready to scream, cheer and shed a few tears as he finishes the last few steps of his journey.

He did it. He's a few pounds lighter and probably pretty sore but he did it. He did it not despite diabetes but because of it. He inspired everyone he saw and everyone who saw him. Saw him in photos, in videos, online or running down one long road or another through the worst weather that Canada could throw at him.

Happy World Diabetes Day folks.

If you have someone with diabetes in your life, give them a big hug today and make sure you tell them that you love them eh?

(photos taken from Sébastien's Outrun Diabetes Facebook page)

12 Years

Today is Hallowe'en.

Tomorrow is my 12-year diaversary.

Twelve years ago today, I woke up feeling awful. I woke up exhausted. I woke up thirsty. I woke up having probably lost a pound or two since the day before. I woke up craving sugar. I woke up knowing something was terribly wrong and hoping that the appointment I had made for November 1st would shed some light on the problem...even though I had pretty much figured out the problem already. I just didn't want to admit it to myself.

Twelve years ago tomorrow, I woke up in my own bed for the last time in a week. I would be misdiagnosed before noon, re-diagnosed correctly by about 4pm, in the hospital by 5 and in intensive care before dinner. I would have called my parents trying to be brave and broken down in tears before I could even say 'hi dad'. I would be put on an insulin IV and assured that insulin would make me feel better. It did. In fact by the time my parents showed up around 8pm I was already feeling better. Probably because my blood sugar was down to 20 rather than 35.

Every day has 24 hours in it. Every hour has 60 minutes in it and every minute has 60 seconds in it. Some days, some hours, some minutes have a bigger impact on our lives than others.

The day of my car accident when I was 16 years old aged me. In the hours, days and weeks that followed that horrible day, I grew up quickly. By the time I left that hospital, I was no longer the little girl who had gone in. I had grown up, matured and learned a lot of life lessons that helped me when I found myself in the same intensive care unit a decade later.

Some of the nurses recognized me from my last stay. I (thankfully) wasn't in the same room again but, as soon as those doors opened, I instantly remembered the smells, the sounds, the feeling of vulnerability and the stubborn refusal to cry no matter what happened next. At least not until my family had left the room.

That week 12 years ago was another one of those weeks where I was forced to mature quickly to adapt to my new situation. I came out of that hospital stronger and braver than I was when I went in.

I am who I am today because of many things. My ability to handle life's curveballs is due largely to that car accident and to that diabetes diagnosis. Those moments taught me how to handle physical and emotional pain with courage and how to separate the little things in life from the big ones.

I wouldn't wish either of those weeks on anyone. But I am grateful that they are part of my own history. My life would not be nearly as rich or wonderful if it wasn't for the moments that taught me what is important...and what is not.

Misdiagnosed

One of the best things about being connected to the Diabetes Online Community (aka the DOC) is that they stumble across things that I might not stumble across and are then nice enough to share it. Which means that I learn more, read more, appreciate more than I would if left to my own devices.

Like yesterday. When my friend Scott shared a link to a position paper posted on a blog I had never heard of before.

The paper was about adults diagnosed with Type 1 diabetes. As in they were diagnosed when they were adults. Not when they were kids as T1's alter ego, Juvenile diabetes, would suggest.

The paper talked about the high number of adults who are misdiagnosed with having Type 2 diabetes. Who are put on exercise regimes and diet restrictions and pills and who are then judged when things don't improve. They not only don't improve but they get worse.

People have ended up in comas because of being misdiagnosed.

People have died.

I was misdiagnosed. It was November 1st, 2002. It was probably about 10am at the time and I was sitting in my doctor's office. She took one look at my blood sugar of 30+ and told me I had Type 2. She told me I would be put on a pill, that I would have to watch what I ate and that I would be fine. She sent me for bloodwork and sent me home.

She called me a few hours later to say that I had to go to the hospital immediately because I had diabetic ketoacidosis. According to her I still had Type 2 diabetes.

The endocrinologist who appeared in my hospital room promptly announced that I had Type 1 diabetes, not Type 2, and transferred me to the Intensive Care Unit where I stayed for four days.

I was misdiagnosed but it didn't even take 12 hours for someone to figure it out. I was on insulin in no time and feeling better by the minute as my blood sugar went down for the first time in...weeks? I never really think much of that day other than to use it in presentations when I tell my diagnosis story.

Then I read that blog post yesterday. I read other people's stories, one after the other. I read about people who were judged for not being able to get their blood sugar down on their own. People who didn't find out for months and months what the problem really was and who came dangerously close to death before they do.

We. Don't. Make. Insulin.

No amount of encouragement, berating, pill prescriptions and exercise regimes will help.

Without insulin. We. Will. Die.

I was down to a vial and a half of insulin in my fridge on the weekend. Enough to get me through almost two weeks as long as I didn't gorge on baklava for breakfast. Enough to certainly survive one statutory holiday. And yet a tiny part of me was freaked out at how low my supply was.

What. If. Something. Happens?

I have come to expect that people who have no experience with something, be it Type 1 diabetes, disabilities or whatever, will often have preconceived notions that can be quite far off from reality. I do my best to help clear those up but I try not to judge people for not knowing when there is really no way they could have known.

Reading about how many people with Type 1 have been misdiagnosed by doctors (doctors!!) frightens me. Type 1, in the big scheme of medical conditions, is not a very hard one to diagnose. Take a blood test. Check for insulin sensitivity. Ask a few questions. Bingo.

And yet when you combine the fact that many more adults are being diagnosed with Type 2 AND Type 1 has that 'juvenile' label attached to it and suddenly it's a problem.

From the sounds of it, it's a big one.

Five Point Fives

When I was at Friends for Life a few weeks back I learned a new diabetes expression.

Five point five.

At first I didn't know what it meant. I overheard a few people saying things like "he's a five point five" or "you hang out with a lot of five point fives".

Being a fan of the art of figuring things out on my own, I didn't ask what they were talking about. I tried to guess.

Why would one person be a five point five and another person not be one? What makes someone a five point five?

It wasn't a gender thing. Or a height thing. Or a body shape thing. Or a shoe size thing. At least it didn't seem to be.

Any guesses?

Perhaps it's easier if you see it written as 5.5 rather than five point five.

Someone who is a 5.5 is someone who doesn't have diabetes. It's a funny thing to call them but makes sense because every time you check their sugar, even after a tray of maple fudge and baklava (mmmmm, maple fudge and baklava!), their blood sugar will be 5.5. Or thereabouts.

(Oh, and apparently my American friends call these folks ninety-nines. Same idea, different system of measurement). 

Being a five point five isn't a bad thing. At least I don't think people were saying it was. I certainly don't think it is. In fact 95% of my friends are five point fives so, if it's a bad thing, I'm so oh elle in the friend department.

I think that I'm going to add my own little caveat to the definition. For me, a five point five is someone who doesn't have diabetes but who also recognize that some people do have diabetes. They might not get all the ins and outs of it but they know it exists.

So I'm happy to add five to fives to my vocabulary but I'm making a point of distinguishing between them and the folks I like to call the don't get its.

Welcome to Your New Reality

Type 1 diabetes is often referred to as juvenile diabetes despite the fact that it can strike anyone at any age. This name is one of the many things that contribute to the misconceptions surrounding diabetes.

It leads many people to think that children get one kind of diabetes and it's not their fault and adults get another kind of diabetes and it is their fault.

Last week Doug and I were out golfing. One of the other golfers spotted me checking my insulin pump.

"Oh, is that a pedometer?" they asked.

"Nope" I said, "it's my insulin pump. I have diabetes."

And then I waited for the response. Typically, I would hear something like "oh, I know someone who has a pump" or "my aunt had diabetes" or "how does a pump work?" etc etc.

I don't usually get a look of horror followed by a "wow, that means your diabetes is really bad". It wasn't even a question. It was a statement of fact. My diabetes is very bad. Therefore I must wear an insulin pump.

I responded with a tight-lipped but polite "actually it doesn't mean that at all. My pancreas doesn't work and I need to take insulin in order to live. I just use a pump as a way to get insulin. I could just as easily use needles". I certainly did not expect to hear "yes, but that means that your diabetes must be really bad" in response.

Now I was frustrated. I understand that most people have no idea about diabetes and I don't expect anyone with no experience with it to be an expert. So, while the first comment was hurtful, I don't believe it was intended that way. Once I explained things, I would have hoped that they would have listened and made an attempt to understand. Or at least ask questions. The second comment went from being unintentionally hurtful to something worse. They were judging without knowing and doing it to my face without apparent care for how I might feel about being judged.

The third comment was the final straw for me. "My cousin has diabetes. She really doesn't take care of it. She is on a pump too and it's really bad."

I responded with "the worst thing about diabetes is how unfairly people are judged. You don't really have any idea what your cousin does or doesn't do to take care of herself. Everyone assumes that, if someone has diabetes, it's their fault. Often it's not. And even if someone's lifestyle did contribute to their getting diabetes, it doesn't give anyone the right to judge them."

For anyone who knows me, saying that directly to someone, particularly someone I don't know well, is as close to boiling over that I get. I was furious. I was hurt. And I was grateful for the dark sunglasses that hid the tears of frustration.

As we walked on to the next tee, me struggling to get my emotions under control and her apparently oblivious to the turmoil she created, a voice popped into my head.

It said: welcome to your new reality.

I am no longer a 28 year old newly diagnosed 'juvenile' diabetic.

I am now an almost 40-year old person with diabetes. A person who makes a point not to say "I have type 1". I say "I have diabetes" period. And I am now of an age when people begin to develop type 2. Which means that the assumption more and more is going to be that I have diabetes because I did something wrong. And I am on insulin because it's really bad.

I have a feeling I am going to be spending more and more time trying to teach people that a) the fact that I'm on a pump is awesome, not awful and b) that it's just not ok to judge people, no matter how much someone thinks they 'know' about diabetes.

Finding Our Tribes

Last week I was in Windsor for a few days volunteering at an Outrun Diabetes event. Sébastien Sasseville, a type 1 hero, left Newfoundland in February and has run all the way to Windsor.

His message is clear. It's not about the run. It's about what it symbolizes. It's about bringing everyone together and it's about the hope it gives people who have diabetes.

I drove to Windsor on Wednesday after work and arrived too late to meet up with anyone. So my first chance to meet anyone involved in the event was the Thursday morning breakfast meeting. We were instructed to be there at 8am. Everyone arrived within minutes of each other and, once all present and accounted for, we did round table introductions.

By the time we were halfway around the table I knew I was in for a great day.

Every once in a while, you find your tribe. A group of people who share something fundamental to your identity. I have a running tribe. I'm slowly developing a golf tribe.

As we went around the table, I discovered that I was about to spend the day with a group of people with whom I share not one but two fundamental links.

The first was diabetes. Probably half of the people at the table had type 1 diabetes. Everyone was proudly sporting their insulin pumps and were blood sugar testing, carb counting and bolusing with ease.

The second thing I shared with the team was a little more surprising because I hadn't expected it. Although in hindsight, I guess I should have.

French!

More people at the table spoke French as their first language than spoke English!

Omigod!

Sébastien Sasseville is from Québec. He speaks English wonderfully and eloquently but he does so with a very obvious French accent. His sidekick (driver, detail guy) on the cross-Canada trek is a good friend of his who is also Canadien-français. The sidekick's father was also there as he had spent the last five weeks travelling with them. He was definitely français. Oh, and the videographer as well as the photographer were also Québéquois. Finally, one of the Animas reps spoke French like a champ. Add me to the list and there were 7 French-speakers there.

By the time the event started, I was able to appreciate how important events like this are. Those in attendance who had type 1 diabetes were given a green bracelet to wear. It seemed a little silly to me at first until I saw little kids wearing green bracelets spot adults, like me, wearing them. Until I saw them spot Sébastien wearing one. And George Canyon, Canadian country singer wearing one. And Lindsay, Guelph university student and pilot wearing one.

Those kids, many of them for the first time, found their tribe. They saw other people like them which, considering how invisible diabetes can feel sometimes, is huge. Parents saw other parents with kids who have T1. Siblings without type 1 saw other siblings without type 1.

For me, I felt immediate kinship when I heard the French accents. And again when I spotted the insulin pumps. For the kids, they felt it when they saw the green bracelets. It doesn't matter how it happens. It just matters that it does happen.

When you find your tribe, you realize how much you missed it, even if you had never found it before.

I think that's what Sébastien Sasseville's Outrun Diabetes project is all about. To bring people together through a common bond. One that, as negative as it can be sometimes, is also a pretty powerful motivation.

What Does That Mean Anyway?

"Are you in control?"

Four little words that have the power to make me cringe.

Especially when asked by a medical professional.

Latest example:

I went to my GP's office a few days ago for my physical and to get a few prescriptions refilled.

Before I saw the doctor I had to meet with a young lady (a nurse?) who goes through the usual things. She checks my weight, my height, my blood pressure and asks what medications I'm taking.

Then she asks the dreaded questions:
"Do you check your blood sugar every day?" and "Are you in control?"

"Do you check your blood sugar every day?"

I forced my face into my best impression of a pleasant/patient smile and responded in my calmest voice "I have Type 1 diabetes. Of course I check my blood sugar every day".

(I wanted to add - I check it 10 times a day AND I have a continuous glucose monitor - but I didn't. I also wanted to say - even if I didn't, how are you going to know if I'm lying? - but I didn't.)

"Are you in control?"

Again, using a picture-perfect look of patience, I responded "I have Type 1 diabetes. It's impossible to be 'in control'. My blood sugar is constantly going up and down. I just do my best to limit those ups and downs. My A1C was good though if that is what you're asking."

"Great!" was her response. End of discussion.

Seriously though - I don't get it. When someone in the medical profession asks "Are you in control?" I always wonder what they are really asking.

Is my blood sugar between 5 and 7 all the time? Of course not.

Do I have lows? Of course I do.

Do I have highs? Of course I do.

I have an A1C of 6.5, my diabetes team is pleased with everything I do but every day, and I mean every single day, my Dexter graph looks like a roller coaster. Sometimes I stay between 4-10 all day long. Other times it's a bit wilder and I go from 3-18. But it's always always always up and down and up and down.

So what does 'in control' mean?

I really don't know what they are asking but I never ever answer that question with a yes or a no. I always answer it with some version of "I have type 1 diabetes, there is no way to keep my blood sugars 'in control'.".

That usually either ends the discussion then and there or, as in the case of my optometrist last year, starts a conversation about my idea of control versus hers. I had no hope of convincing her that I could have highs and lows and still get a gold star from my doctor. She was extremely concerned when she heard that, of course I have lows and of course I have highs, and cautioned me on all the awful things that will happen if I let that craziness continue.

You can imagine how hard it was to keep my 'patient' look going that day.

"Are you in control?" feels a lot like greeting people with "hi, how are you?" We don't really truly want a long drawn-out answer to that question. We just want them to say 'fine thanks, and you?' so that we can get on to the real stuff we want to talk about.

"Are you in control" is supposed to be answered with a simple "yes".

I refuse.

Because I feel that it is important to gently teach people that questions like that are silly. And useless. And insulting. And, in my opinion anyway, tells me that the person asking the question does not really understand what Type 1 diabetes is anyway.