Life is a Highway

Life is a Highway… What a great driving song!

It is also a great metaphor for living life – and driving – with diabetes.

Despite the temptation, and except when we are driving on the autobahn, most of us try to stick to the speed limit, more or less – and some of us are better at it (or luckier) than others.

When you have Type 1 diabetes, one must take care not to ‘drive low’, by observing personal blood sugar limits. Just as any driver will put on a favourite driving song when hitting the road and putting the pedal to the metal. In doing so, risk factors are assessed – personal safety, risk to others, and if making poor choices, one ultimately can face fines, or worse.

It’s the same with blood sugars. There’s no room for error, because errors can end up with dire consequences – for yourself and for others.

For me, I won’t get behind the wheel if my blood sugar is below 5.0 mmol/90 mg. An additional rule that I observe – if I’m in that mid-5.0 area (100 mg-ish), and my CGM (Continuous Glucose Monitor) is showing a down arrow (telling me “Warning! Falling blood sugars”) when I am heading out the door, I won’t get behind the wheel then either. I’ll sit down, load up with carbs and/or sugar, and wait it out.

Work will have to wait.
Grocery shopping will go on hold.
Life is absolutely suspended until I’m in a drive-safe range.

Once I get behind the wheel, the checking doesn’t stop. In fact this is when I become more alert – to the way I am feeling, and also to be in tune to what my CGM is telling me. Although it is set to alert me at 4.4 mmol/80 mg, when it does alert me, it means that I’ll pull over without delay, and will sit there, scarfing down glucose, until my BG rises above that magical 5.0/90 mark, with an up arrow. I don’t ask questions.

There's no load, I can't hold

Road so rough this I know

I'll be there when the light comes in

Tell 'em we're survivors

From "Life is a Highway" by Tom Cochrane

So driving with Type 1 diabetes. No excuses. No “I’m almost there”. And that's that.

Pausing to breathe

With holiday time upon us, I am reminded of the type of world that we find ourselves in, and the technology that is part of it. Whether the latest Nintendo, tablet or the handy robot vacuums that wander our houses, something is always competing for our attention.

Actually, I kind of wish my pump looked like this. Pump manufacturers, take note

When you have type 1 diabetes, even more technology makes demands on you everyday, all day. Remember those tamagotchis? Feed me, pet me, play with me now, or you will be sorry. If you treat me well, I might play nicely. For a while.

But there comes a time when it just seems to much. This past summer, this reached a critical level. My pump and CGM seemed to be nagging, demanding, day and night. One in particular went rogue. Rogue because there seemed to be no discernible benefit, because it was wrong much of the time, so after more lost sleep, I wondered what's the point. I put it aside for the time being, but when I upgraded my OS on my Mac, Carelink, which is used to upload boatloads of data, was ill prepared for the upgrade, and was deemed broken; the last straw. My colicky tamagotchi babies were laid to rest.

So I hauled out my Ping out of my trusty Dbox (my treasure box of diabetes supplies and retired equipment), programmed it up, ordered supplies, and I haven't looked back. Mind you, I still don't have a CGM but one day I will do something about that. I have mixed feelings about ramping up the technology again. I am rather enjoying the relative peace that the Ping provides.

I admit, some technology does improve quality of life. But one day, barring a cure (ha!) (sorry that was a cynical slip), I hope to only have to worry about the feeding and watering of a Diabetes Alert Dog. Not only will that dog give me peace of mind, but an occasional appreciative wag of the tail after a long walk, which would be much more than my CGM could ever give me.

A Solid B+ - Open Letter to My Endo

As part of Diabetes Blog Week, I'm going to do my best to post every day. So what if I'm already a day behind, right? Today's topic is:

Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one's daily life with diabetes? On the other hand, what do you hope they don't see?

When I come to visit you, I may appear calm, cool, collected, and I even make jokes. This is not the real me. This is a façade. I am a fraud. It's not because I'm hiding anything. I do this because I am really a basket case, just fraying at the edges, ready to come apart at the seams.

I know you are trying to help me, and I know you must be wondering why anyone would be this anxious when you're just trying to help me?

What I want you to know is that I'm trying. Back in the day, I was a solid B+ student who got a good share of As. However, these days I know that I am a C student in your eyes - I am the student that never seems to get it quite right.

I know you never have criticized me directly. I know you want to guide me, to help me overcome the challenges that I have faced and will no doubt face in the future.

But we both know...

I don't exercise like I should.

I often miscalculate the number of carbs and even forget to bolus on occasion, which is obvious when you look at my logs.

Sometimes I even forget to hit the button on my pump that one last time to actually initiate a bolus.

I do mean to test more frequently, but sometimes, well, life just gets busy, and I don't quite get to it. I know my HbA1C may even be less than stellar with a 9 point something. And no, I can't even remember what it is. To me it is nothing more than a measure for you to grade me.

I know that you know that I live with this disease every day. But I also think that the words "every day" might mean something different to me than it does to you.

For example, when you go to work every day, then you go home, leaving the day behind, and enjoy what's left of the day with your family.

When you walk the dog every day, you get out there, play with your dog, come home and perhaps watch an episode of Modern Family or the Amazing Race, or call your mother.

Yes, I do all that too (admittedly I could walk the dog more, and I'd certainly like to have the luxury of sitting in front of the TV), but every day, I am wrestling with this blasted disease that permeates everything that I do.

I sometimes deal with lows that seem to come out of the blue, interrupting conversations with family members, fogging up my mind at work, and then must snack, test and deal with the subsequent roller coasting of blood sugars. I fight stubborn highs, which demand my attention.

I don't get to plan these things. They just jump into my life, and I deal with them.

I would like to share a story with you. Last night I was prodded by the CGM, insisting that I had a low blood sugar. When I got up to test, it turns out that my CGM was playing a stellar game of the Boy Who Cried Wolf - and insisted on playing it - all night long. The dog thought it was pretty exciting too, and thought she might need an excursion to her potty in the backyard.

This is not an unusual story. It is one story of many that interrupt me and demand my attention. This is my "every day".

To look at me, you may not see a B+. You may see something less than your definition of best. But in my eyes I'm still that solid B+; the plus because I am still trying my best.

All I ask is to please see beyond all the numbers and get beyond any assumptions about me. See me for who I am - as someone who is getting by and perhaps just needs a break.

I would like you to know that I know you are here for me. But next time we meet, take a minute to ask me how I'm doing, and then, really listen to my answer.

A Little Help and a Lot of Courage

I'm writing this on Mother's Day, but today's post goes beyond that.

Today I'm visiting my Mom, for the first time in more than a year. But today I have a little bit of my independence back, and we are going on a road trip.

But first, before I get to the point, I would like to review the obvious, and the not-so-obvious things about mothers.

For the more obvious, our mothers:

• Raised us
• Put up with our crap
• Kicked us out of the nest, only to have us return decades later after a crisis (ahem, thank you).
• Patiently listen to us, endlessly going on and on about our daily stuff

They also:

• Drive for miles to pick us up after a bad low blood sugar driving 'incident' and drive us home again.
• Make a CGM (Continuous Glucose Monitor) possible when our health fails us.

Okay, admittedly, those last two are very specific examples, but real nonetheless.

This is a simple celebratory day to say thank you.

The past year was a rocky one for me. It's almost been a year since I had a devastating low blood sugar while driving. It was likely due to multiple factors. My driving license was suspended for 7 months, and after a lot of hard work and a ton of support, even now I'm still being monitored by the Ministry of Transportation, so I'm not out of the woods yet. But the most important lesson that I learned this year was that I test a lot more, and never take anything for granted.

Gone are the days that I say, "I'm fine". I only say that now when I test, get a 6.1 mmol (110 mg), and then I say "I'm fine. For now." See the difference?

In the DOC (Diabetes Online Community), we say, "You Can Do This", and I can do this. But as much as I know I can do this, I haven't done it alone. I've done it with a ton of support from my family - my husband, my daughter (who reminded me today that I'm an awesome mom), my Dad, and on this special day, I am recognizing my Mom.

So now I'm sharing a tribute from one very cool (and Canadian) rapper Abdominal and his Mom. Of course, I don't rap, I can't sing in tune or the right lyrics, and I don't even draw. And neither does my Mom. Just ask her, she'll tell you that too. But this video just makes me smile, just as my Mom can make me smile.


Courage by Abdominal (and his Mom)

Today I'm smarter, I respect diabetes and the impact it can make on my life - good and bad, and today I'm decked out with a CGM (which is still a bit of a love-hate relationship, but I'll get there).

For all you out there with diabetes, and are faced with some life trials, you can indeed do this. We pick up ourselves and have the courage to forge on.

But most importantly, don't be afraid to reach out. To your Mom, Dad, life partners or friends, and of course, to the people online in the DOC.

I'd like to leave you with a little something, because you can do this, with a little help from your friends.

Oh, I get by with a little help from my friends,
Mmm I get high with a little help from my friends,
Oh, I'm gonna try with a little help from my friends.
                                                    Lennon/McCartney

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. 

She's got a name!

Her name is Rosie. 

She stays by my side at all times. She is a Type Awesome* in my life. 

She:

Suggests...

Reminds...

Pokes...

Prods...

Jogs my memory...

Nags...

Admonishes (but only when I'm ignoring her)...

Doesn't judge...

Looks out for me...

Tells me what my blood sugar is doing and what I can expect.

Rosie is my robot - my artificial pancreas - a Medtronic Paradigm Veo. She is an Insulin Pump and, along with her transmitter, she is Continuous Glucose Monitor (CGM). The transmitter communicates my blood glucose to Rosie, and tells me what's going on. She tells me when I need to do something.

Have I tested lately? Double arrows up? Perhaps I need more insulin, perhaps I guessed my carbs wrong... maybe my site has gone south. Double arrows down? Better test. Maybe I need a snack. But what she's telling me is that I better do something about it. I admit, perhaps she is a little overzealous about her job, and perhaps not perfect, but who is?

What won't Rosie do? She won't get me juice when my blood sugar goes low, do my housework and she doesn't cook.

I'm sure I can look forward to some new added features in a future firmware update.

*Type Awesomes are those individuals forming an invaluable support network for People Living With Diabetes.