Tuesday, May 12, 2015

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. 


  1. Those are four great lessons. I was really struck by what you said in Lesson 2: "It was more advanced, but also very demanding, and exhausting." That is absolutely true - I'm grateful for advances in technology, but things are still tough just in different ways.

  2. Great post, Jamie!

  3. Hi! I really enjoyed reading your post and promise to come back to read more. I too often think of that "Little Engine" and continue to tell myself that I know I can. I agree with Karen's comment on Lesson 2. After 60 years of living with type 1, the recent technical advances amaze me, but the demands on my time and money require that I choose very carefully. Thank you for sharing your lessons.