Lest We Forget

To honour all those brave souls who gave their lives serving the military, 

"Lest We Forget" is published this 11th hour on the 11th day

I posted this first on 11-11-11 at 11:00 am, and I share it once again with you. 

In Flanders Fields

In Flanders fields, the poppies blow

Between the crosses, row on row,

That mark our place; wait and in the sky

The larks, still bravely singing, fly

Scarce heard amid the guns below.

We are the dead, short days ago,

We lived, felt dawn, saw sunset glow,

Loved, and were loved, and now we lie

In Flanders fields!

Take up our quarrel with the foe:

To you from failing hands, we throw

The torch; be yours to hold it high.

If ye break faith with us who die

We shall not sleep, though poppies grow

In Flanders fields!

~ John McCrae 

In Canada and throughout the Commonwealth, Remembrance Day ceremonies offer veterans the opportunity to remember and salute fallen comrades, and all Canadians an occasion to reflect on the sacrifices made and the tragedies endured in their name.

Lest We Forget is what we say, for we shall not forget. For me, it reminds me of these fallen soldiers who have given the ultimate sacrifice - instead of staying home, safe with their families, attending to their daily lives, they fought in trenches, enduring pain and suffering that most of us can't even imagine. This day was set out so that we do not forget these fallen men and women who gave so selflessly. This day is for them. This post is for them.

The drawing above was done by my nephew Keith in 2002. He was only 10 years old at the time. It is clear that he "got" it. And I hope it serves to help us all "get" it too. 

Lieutenant Colonel John McCrae, physician and poet, served in WWI

in the Canadian Medical Corps and had been artillery veteran of the Boer War

The Games End

I've learned some things about myself in the last few months since my license was suspended. Well, I've learned a lot of things, but the one thing I've figured out, I want it to be all about me. I want my doctor's full attention. All of it. Not just a piece of it.

Credit: Mike Hoskins, The Corner Booth: Diabetes Art Day 2011

Before the Driving Event, I would arrive for appointments, and my endo and I would have a brief conversation, "Do you have any concerns?", "Let's tweak your settings some more", that kind of thing, followed by extensive number crunching and subsequent pump setting changes. And that was enough when I was an average person with diabetes. But it seems to me that since the event, I am no longer just average, and the landscape has changed. I am now on a mission to change it to a landscape that will work for me.  

My endocrinologist, Dr. K, works in a large teaching hospital, and I have discovered that doctors and patients engage in games, and I don't like games when it's my health at stake.

Remember the broken telephone game that we played when we were kids? You know, the one where everyone sits in a big circle, then someone reads a phrase, then whispers it into the ear of their neighbour, and that neighbour into their neighbour's ear, and so on? Until the end of the circle, and the last person has to say the phrase out loud. Inevitably it is always wrong, and sometimes has hilarious results. However, it's not so hilarious when we're talking about our health.

Game #1 - The CDE/Doctor

In between appointments with Dr. K, I have ongoing email exchanges with my CDE, Sophie (not her real name). It's her role to review my weekly BG numbers and suggest appropriate changes. At times, I had some concerns or questions for Dr. K, so I would tell Sophie, and she would tell Dr. K of my concerns on my behalf, and afterwards, she would paraphrase Dr. K's answer back to me.

This kind of worked, so I thought, however, each time the air was just a little chilly. So I was left to wonder what may have really been said. Did Sophie not relay my message as I wished it to? Did Dr. K misinterpret Sophie's words? Who knows. I wasn't there.

Game #1 Score:  Endo 1, Jamie 0

Game #2 - The Appointment

The rules of engagement for appointments plays out like this: First I meet with the nurse, who records all my vitals. So far so good. Then I meet with a resident (never the same person) who leads discussion, asking questions relating to my health and BG numbers on various charts, and then goes away to give her summation to Dr. K. Again, I am not present, so I cannot assess if she is understanding my intentions and concerns. I cannot hear what the resident says, I do not have the opportunity to clarify anything at all, until she says something that shows the disconnect. After their meeting, both return, and Dr. K leads the appointment from then on.

By this time, over the past couple of months, Dr. K has only heard my concerns through Sophie and the  resident. Everything except my BG numbers has been tied up neatly in a bow, and this is really all Dr. K seemed to want to focus on. At no time did she follow up about the concerns, or even seem to have time for them, and was ready to focus on my numbers only.

However, as I tried to discuss some of my concerns, I realized that she somehow got the impression, and wouldn't let go of the impression, that I wanted my license back no matter what, with no regard to my safety or health. Which was NOT true. But something had happened that gave her that impression. At one point I told her that I felt frustrated by how long this process was taking. Dr. K told me that I must "accept the reality".

... umm, doctor, first of all, it was you who told me the timelines that I could expect months ago... and did you just tell me to suck it up??!

Game #2 Score: Endo 1, Jamie 0

Game #3 - The Teaching Opportunity

Something else has also occurred to me. Throughout the whole process of reporting my Driving Event to the doctor, I had expected that she might be reporting the event to the Ministry of Transportation. I know of other doctors who used discretion on a case-by-case. However, one might wonder if this option may have been coloured as a teaching opportunity for the resident who is present throughout the appointment. This is the Teaching Opportunity session of How To Tell A Patient That You Have An Obligation To Report As Legislated By The Province Of Ontario.

Hmmm, perhaps true? Perhaps not. I don't know, but it kind of seems that way to me.

Game #3 Score: Resident 1, Endo 1, Jamie ?

Ending the Games - Next Steps

So there's a little more game playing in my future. I will continue to work with my team group of professionals to provide a successful report to submit to the Ministry. My next appointment is in a couple of weeks. And then, hopefully I can implement steps to put that behind me.

I can't guarantee anything, but my future medical team is going to look different.  It's going to be one where my voice is heard, directly from me, to those I am working with. For this is how relationships are built.

The waiting game

So I've been waiting. I continue to wait. I've been playing a waiting game.

Artist Credit: Sian Storey

I also want to be high. No, I'm not a junkie. Unless you count insulin as my drug of choice. This is one of the requirements of this waiting game.

But the high I'm referring to is for my blood sugar levels.

Now you're thinking, that doesn't make sense. Who wants to be high? Doctors and medical professionals everywhere warn of the perils that manifest themselves when your blood sugars are high.

Mythbusting alert: sometimes complications can manifest themselves despite good management of blood sugars.

Now I'm not saying that I want to be in the stupid high range. High-normal range is good enough. I just don't want to slide into low territory, for this may have a price that I'm not willing to bear - which is the ability to drive for months to come.

So let me tell you a story. It's not a pretty one, and I'll try not to bore you with the extraneous details.

Back in June, I had a driving "incident". Or maybe I should call it an "event". Whatever it was, I had a devastatingly low (blood sugar) while I was driving. Although I didn't test immediately before driving, I wasn't thinking (mistake #1) because I was high not 1 hour before.

Now I did bolus at the time, however my history had been that once high, I tended to be stuck there. However what transpired was a perfect storm of a (possible) misbehaving pump (the manufacturer subsequently replaced the pump due to some "inconsistencies"), a misbehaving pancreas, and hypoglycemic unawareness. Perfect. While the manufacturer immediately replaced the pump, I just wish the rest was as easy to replace.

As I am here today, writing this blog post, and the fact that many of you have seen me out and about the interwebs, it has had a good ending. I wasn't hurt, no one else was hurt, there was no damage to our brand new car or anything else. This just created a tremendous concern that something had to be fixed, so I spoke to my medical team.

And, subsequently the event was reported to the Ministry of Transportation by my endocrinologist, and my license was suspended. I shared my story with her in the hope that she could help this from happening again. Silly me, for I discovered that telling the truth about what happened only served to take a tremendous toll on me and on our family.

The loss of my license has changed how I conduct my life. We live in a small town with no public transit, this has been problematic. The train that I take to get to work everyday is on the other side of town. Too far to walk. I now rely on my daughter, my friends, my neighbours, and yes, I'm walking a lot more. That is good, however, it has been a tremendous loss of independence.

It is important to me to restore life the way it was. Except for that driving while low part. I have a spiffy new pump/CGM (continuous glucose monitor) combo that tells me all about my lows, and will even suspend insulin if I ever do go low… not that I expect to given the fact that I will act immediately upon hearing such low alarms.

Well, this is where it gets kind of murky. The Ministry requires my endo to report a bunch of stuff about me, including all lows, over the course of 30 days.

So what is low according to the Ministry? Well, the number of incidents of 4.0 mmol (72 mg) or less must be reported. No regard for time of day - just how many. No explanation that something happened while cutting the grass or vacuuming the house. So I think that if I just stay on the high side for one month, that will be good enough.

Unfortunately, it appears that my DTeam and I are on different pages. On 3 separate occasions, adjustments to my pump settings have actually resulted in lows. I realized none-too-quickly that my team was making adjustments to my basals based on my CGM data. Everyone (except my team apparently) knows that you don't do this. It reports trends, but it is far from perfect. This is a CGM newbie mistake. I shared with my team. However, there was no apology and no accountability.

So will my numbers be strong enough to report them to the Ministry? Only my endo will be able to determine this at my appointment next week. And if she submits it, I will wait for 6 weeks to hear back from the Ministry. If not, I guess the 30 days could start again. All going well, I might have my license back in time to visit family for Christmas. If not, well...

The good news is that I now have a pump/CGM system that will help me to manage this stupid disease better. That's a good thing. I know this.

So in the end, I continue to wait. I've been lining up my ducks, getting them all in a row. And now I'll wait some more.

Rocky roads

I've heard it before, but there really is a learning curve to a CGM (Continuous Glucose Monitor). 

When I started a month ago, I had a colourful printed list about how to insert sensors, how to calibrate, and other CGM essentials. This is what the graph looked like in the beginning. I was a happy camper. I was going to get my BGs in some sort of order. 

I had hope. I was fresh. I was excited. 

See that beautiful flat line?

But things deteriorated. I was starting to see graphs that looked like this one: 

Jamie's Very Very Bad No Good Diabetes Day

Then there came that fateful night last Sunday - a work night - when my CGM was busy alerting me all night. That's every hour folks. By morning I was a ragged wreck. 

So the next day I called Medtronic, and later had an enlightening conversation on Twitter with some awesome DOC (Diabetes Online Community) members, that the picture came together for me. 

So here are the basics that I wasn't really getting:

1. Calibrate only when your BGs are stable
2. CGM must be calibrated at least twice a day, or it can shut down. 
3. Calibrate* 3-4 times a day, at least 4 hours apart, and wait for 1/2 hour before eating/bolusing
4. Even if your BG is high, don't do any corrections if you are calibrating - either calibrate and wait for 15 minutes, or if BG is too high, it might not be a good idea to calibrate right then
5. Keep well hydrated
6. Make sure your ISIG value according to CGM is good (still trying to figure out what "good" is... I'm still on that mission
7. Keep well hydrated
8. Make sure your pump/CGM is located close to the transmitter/sensor. Apparently it was too much for the manufacturer to use a transmitter with enough power to reach from one side of my waist to the other (and really... I don't think I'm that fat!)
9. Oh yeah, keep well hydrated

*Calibration is when you give CGM info correlating it with your meter, which is the gold standard for testing your blood, with a variance allowed of +/- 20%

(For those looking for really good info about CGMs, please check out Jeff Mather's Dispatches post What I've Learned About My CGM. Thank's Jeff!) 

By the way, no one told me before speaking with the DOC that steps 5, 7 and 9 were essential steps. (I love the DOC for this kind of thing). 

Apparently if one doesn't follow these steps, you can get a crazy-*ss graph like the one above. 

And yeah, that's just the beginning...

Remember my Whiteboard Advocacy campaign that I was running at work last year? Well I've repurposed the board (aside from work purposes of course)... and started a Calibration Process Map... figuring out what the best time is to calibrate the darn thing. 

This was my first attempt ... doesn't look good. But it was a good start. 

First of all... it looks like I need 26 hour day to make this puppy work. See those thick lines up there? That's when I figured that I shouldn't calibrate. 

And what I was doing before? 4 times a day? Stable? Ok, go for it. Apparently that's wrong, wrong, wrong. And yeah, I don't drink... aside from the much needed coffee. 

Things have settled down a bit... I was having Whiteboard Separation Anxiety this weekend, and was using my kitchen chalkboard, which usually is host to my shopping list. 

Anyway, this is what it looked like this weekend:

And so things have been looking a little better the last couple of days. 

So I've travelled some rocky roads, and now I think I can make this puppy work. I have hope.