I Can: Four Lessons

I think I can...... I think I can ...... I think I can

We remember the mantra of the Little Engine That Could. Little did I know, or even imagine way back when, that I am now that little engine. For every day, living with diabetes, I have been taught what it is to fail, and I also learn, again and again, that "I can".

When diagnosed with diabetes, I held the belief that maybe I couldn't. That perhaps life would be different than that life I envisioned. Certainly it was different. But as it turns out, not for the reasons I thought.

Lesson 1 - Diagnosis and Life Goes On

Glucometers: 2010 vs 1988

In 1988, I was 27 years old, two years into a marriage, and ready to start a family. Then the diagnosis. Certainly we couldn't. But after only a few months, I was expecting, and facing a huge learning curve for managing equally crazy blood sugars that come with pregnancy. It wasn't easy, but I was determined, and was armed with my meter - a big brick of a thing, that dutifully reported my blood sugar. It was a scary time, but I was young and determined. There were lots of doctor appointments and worry, but we had a beautiful - and healthy - daughter, who still shines today. 

I have gone through many life changes, I'm happily married to a wonderful, understanding, supportive, and (above all) patient husband. I have an interesting job. I've found my voice as a diabetes advocate. I'm a librarian of my community's Little Free Library and, of course, I'm a blog writer. How far I've come!

Summary: I Can have a healthy child and a great life. It just takes some determination and chutzpah. And yes, I've also got a healthy sense of humour. It gets me through the day. 

Lesson 2 - Living Life Better

Eating what I like #takethatwendell ;)

Fast forward 19 years. Insulin therapy had changed - from 2 needles a day to that of multiple daily injections. It was more advanced, but also very demanding, and exhausting. I had read about the insulin pump, but just couldn't imagine being hooked up to anything all day, everyday. There was no DOC (Diabetes Online Community), and I had only connected with a few groups that focused on Type 2 diabetes. 

But I was supremely irritated by the constant requirements of MDI. The guessing game of what the long term acting insulin might be doing, causing seemingly random highs and lows. I had heard about the flexibility and the lifestyle change it could bring. But the decision to pump changed a lot for me. Gone were the early days of hiding in bathrooms to inject, not wishing people thinking I was some sorry heroin addict (perhaps misguided because I looked nothing like an addict).

Gone were the days of rigid eating schedules. I also didn't count carbs at the time, so the pump - and counting carbs - allowed me to eat just about anything I wanted. But most importantly, it has brought my BG numbers lower, admittedly far from perfect, but to a number that both I - and my doctor - can live with.

Summary: I Can live a better life with my insulin pump.

Lesson 3 - Learning Again That I Can

A pretty good day for me - a no hitter!

In 2012 things changed for me. I had a bad low while driving and was diagnosed with a very scary complication - hypoglycemic unawareness - the inability to feel any symptoms of low blood sugar. I still wonder why no doctor before had mentioned it. I had never read about it, and believe me, I had done a lot of reading. I knew all about loss of limbs and dire warnings of blindness, and even early death. I knew a lot of scary stuff, but this one hit me hard. 

I lost my license for several months, which was a real challenge living in a one-driver household, in a small town with no local transit. It was a blow to me when I realized I couldn't even pick up my mail from the post office without my license - my ID was gone. And so was my independence. It was a blow to me because it was first a lesson in 'I can't'.

Although CGMs were common in the US by 2012, not so much here in Canada. But what I did know is that the constant monitoring afforded by the CGM would be invaluable. I worked hard over those months with my doctor, and ordered a CGM. What a difference it has made. The CGM tells me what my body can no longer tell me. Where I used to have obvious signs of low blood sugar - weakness, sweating and facial numbness - I now make it a habit to check of my trends (one arrow up, two arrows down)... whatever is going on, I can now respond when I still have my wits about me to do something. I can be proactive, instead of reactive. How cool is that?

Summary: The CGM has brought me from a place of feeling I couldn't, back to I Can.

Lesson 4 - Empowerment by Getting Ahead of the Game

Nightscout: Data in the Cloud

Fast forward a couple years to December 2014, when I caught wind of a growing movement to free diabetes data into the cloud. At first I didn't see the point. My data was on my CGM, so why would I want to do something like this? The problem was I was missing some warnings. Winter coats, busy train stations, or just not hearing it. 

Nightscout - a project that freed diabetes data from devices like the Dexcom and put it into the cloud - brought my trends and my data right to my wrist. I could just glance at my watch or get subtle haptic tap on my wrist to let me know what is going on. (For more information, you can read all about it for yourself at Nightscout.)

With just a cheap cell phone, a tiny data plan, and a Pebble watch, I was able to jail break my data. It's in the cloud now, and I haven't looked back. It has proven itself by saving me from severe lows several times because of its diligence and my immediate awareness of what is going on, even in noisy busy environments. 

Even better, my support network - my husband - can just check his app at home to see what might be going on. This was huge for him because he now has assurance that I'm safe, without having to wait for me to text him to tell him so. With Nightscout we are ahead of the game. 

Summary: I am empowered by having open access to my data. I can now say, I Can.

And now what?

I can hardly wait for my next discovery - my next lesson in "I Can".

Will it be technology like the artificial pancreas that is being tested, and promises to take over the work that I now do?

Will it be smart insulin which will release only what I need, when I need it?

Or is The Cure just around the corner?

I won't hold my breath for any of those things, because you just never know what is around the corner. 

But I know I Can.

Just like that Little Engine That Could.

We can change the face of diabetes. Just as I've learned and re-learned the lessons of I Can. We can do it many ways, including supporting, or even participating in the TELUS Walk to Cure Diabetes. 

Let's change the direction of change by participating, supporting a family member, or any one of our T1D friends, or at least share the word with others. If you live somewhere else, look up your JDRF chapter and find out what they are doing, to make living life with diabetes just a bit better for all of us. 

This Walk raises critical funds for research focused on curing, treating and better preventing Diabetes. I am all about that! 

And is it a fit? I'll let you figure that part out, and I'll just continue writing, and hope what I share with you here gives you something to reflect on. 

Running Against the Wind

I am honoured that I have been asked by JDRF Canada to be part of their Blogger Network. When they reached out to me, I couldn't get over the fact that they even found me.  But I also know that as a person who happens to blog, who has lived with Type 1 diabetes for a very long time and also live in Canada, that it could happen, and then it did. :) 

Living with diabetes is like running against the wind. 

Sometimes living with it is like being brushed by a gentle breeze - the calm days that quiet our minds, when our blood sugars behave and we can exist in the diabetes happy zone, almost like 'regular' people. 

There's a whirlwind of doctors - specialists and general practitioners - who endlessly discuss our A1c's, our eyes, feet, and other body bits that can be affected by diabetes, as we worry our bodies might betray us as we get reminded about what we should be doing, and what we shouldn't. 

Credit: kubcia

Diabetes can be like a tropical storm, which can batter you, throw things at you that you didn't see coming, which leave marks like unseen bruises. 

Low blood sugars pop up at unexpected moments. Sometimes we can see them coming, and they leave us numb and confused.  They wake us up in the middle of the night or keep us up, not letting us get the much needed sleep, ironically because we were up the night before, dealing with yet another low.

There's the frustrating high blood sugars, which despite throwing insulin at them, routinely mock us, laugh at us like those creepy little gnomes that live in people's gardens. Then, just to add a little insult to injury, because as we overcome the high with insulin to attempt to get those numbers down, because the system is imperfect, back down to lowland we go. 

Don't be disheartened though, for diabetes gives us resilience. All of these winds have made us who we are. 

If we each had a magic mirror, and could wish away all of those winds away from our pasts, and whisk away all of our challenges, it would also wash away the discovery of how strong we really are, and who we have become. Without that, would we be who we are today? 

It's  not all about those storms. But I've learned over the years, just as those gentle breezes shift, diabetes also shifts. I continue to get by, to survive, and I will continue my journey to become a better and stronger person, while running against the wind. 

Sometimes I go about pitying
Myself,
While I am carried by the wind
Across the sky. ”
            ~ Frances Densmore

We can change the direction of the wind. We can do it many ways, including supporting, or even participating in the TELUS Walk to Cure Diabetes. Our very own DOC (Diabetes Online Community) member, and Canadian, Alanna Swartz, is stepping out to make such a difference. 

Let's change the direction of the wind by participating, supporting a family member, or any one of our T1D friends, or at least share the word with others. If you live somewhere else, look up your JDRF chapter and find out what they are doing, to make living life with diabetes just a bit better for all of us. 

This Walk raises critical funds for research focused on curing, treating and better preventing Diabetes. I am all about that! 

And is it a fit? I'll let you figure that part out, and I'll just continue writing, and hope what I share with you here gives you something to reflect on. 

A Matter of Perspective

A conversation that I recently had:

Pharmacist:  You are on only two medications! That’s amazing!! 

Me: Actually, it’s three. 

Pharmacist:  ????  Two.  

Me:  Don’t forget the Insulin. 

Pharmacist:   Oh, right!!! But you are like a rock star diabetic! Nobody is on just two meds! 

Now, it did feel good to be called a rock star diabetic. Because nobody has ever EVER called me that. 

Credit: Valerei

This conversation came 26 years - almost 10,000 days - after my diagnosis, and it did make me feel kind of warm and fuzzy inside. But I would bet there are lots of PWD - People With Diabetes - who are not on other meds, like children for example. But I’m not going to argue that point. 

Because what strikes me is this:

Has insulin become so ubiquitous in our culture, that it is no longer seen as a medication with its own challenges? 

Is this why people shrug diabetes off? Is it why people tend to think that all you need to do is eat well, take your insulin, take your meds, and all will be well? 

Does it take a diagnosis of diabetes, and living with diabetes for a while to understand that insulin is not a cure? That even with the modern advances of better insulins and technology, that there are still many challenges for those who inject or pump it everyday?

Insulin is not a cure, and it is not easy to manage. But I do my best to manage it. Every day. 

And that makes me a Rock Star. And if you are a Person With Diabetes, that makes you a Rock Star too. 

So when you're not feeling much like a Rock Star, and it will happen from time to time, remember that it's a matter of perspective.

When it rains, look for rainbows

When it's dark, look for stars

                                               
                                                                          Esther Comau

That thing you're doing*

*The full title of this post is actually "That thing you're doing right now, and don't even know it", but for Twittery reasons, I have shortened it. :)


An advocate cares. 

An advocate wants to affect change. 

An advocate wants to engage, influence, and chart new paths in churning chaos. 

Advocates are all that, and none if that. It's like saying all ALS supporters want to have buckets of ice water thrown on their heads. There are as many types of advocates as there are people. 

I call myself an advocate, because I speak what's on my mind, usually about diabetes but not always, albeit I often edit it just to keep it in the realm of being family friendly ;)

~Mahatma Gandhi~

But far from the advocacy 'stars' (bless them!), I am a small tiny star just trying to make a tiny difference. I choose to share my thoughts about diabetes in a blog, on Twitter, and with my co-workers if they ask me about it. 

When I see others struggling with diabetes, or with any other challenges online, I break out of the mindset that "they will work it out" or "Somebody Else will help them", and I will offer suggestions, or if nothing else, give them a little virtual pat on the shoulder if I don't have an answer. 

I am sometimes inspired to write letters to organizations, but not often, because I usually end up feeling my efforts seemingly go unnoticed. I do when I think it's important though, and I do harbour a little hope that somebody out there is sharing that email with others, exclaiming, "See this??! Isn't this brilliant??!"

All this being said, I'd also venture to say that you are an advocate too, because you are reading this blog post. You probably have read some other, much more inspiring posts and commentary than this. You have come down a different path to get here, whether it was looking for insight, looking for clarity, or just a little curious. 

Whatever it is, whatever brought you here, and however you get to where you are going, you will take away a new fresh perspective all your very own. And one day, you may find yourself sharing your own take on things with others - your partner, your extended family, or your best friend, over a cold lemonade and a package of Oreos. And maybe your sharing with them can expand their world just a little bit too as they go on their own life journey.

And that makes you an advocate too.

It doesn't take much. Just as Mahatma Gandhi said, be the change you wish to see in the world.