Overheard today -

Cadence asks "mom, how sick was I when I was a baby?" We talked about being unconscious, bags of fluid and insulin going into her body by tubes, about the drill and syringes that pumped fluid into her shin and the central line doctors put into her heart to save her life. She asks "did they take all the love out of my heart". I smiled + said, "no sweetie, they kept you alive so you could keep lots of love in your heart!!" She smiled back and said "that's good, because I love my family, so much"

Just Plain Awesome.

new discoveries

I supplied the venue for an Insulin Pump information session last night at my clinic The Calgary Centre for Health. We will sometimes open up our facility to different interest groups, providing a free space to host a seminar. I had boatloads of stuff I had to get through at the office, so spending a few extra hours at the clinic last night wasn't a bad idea. There was about 20 people, there mostly parents of diabetic children. Very few people get to spend an evening with a bunch of strangers but be intimately connected through a condition. It's really kind of comforting to be in the presence of so many that know the struggle, it's an affirmation that while wandering the house at 2am looking for test strips, infusion sets, batteries, juice boxes, and hail Mary's....there's someone close by doing the same thing. The mid-day yawn and eye rub could almost be the universal handshake of diabetes.

Animas brought in Lorraine Anderson, a certified Diabetes educator and fellow pumper. The brain trust of Ward Clark, territory Manager for Alberta, the great Joe Solowiejczyk, and Teresa from the Alberta Children's Hospital were among us in attendance. The content discussed was far more in depth than just how great pumps are for managing diabetes. We chatted about matching food to insulin blousing, how to really take advantage of combination boluses, pizza bolus, super bolus, all of these great concepts that many of us have heard of but been too nervous to experiment with. Lorraine did an amazing job of empowering the group to have some "fun" with diabetes, see if you can out-think the beast. I consider myself fairly knowledgeable about insulin pumping, but found myself completely engaged and fascinated by the discussion. In fact, texting the discussion with Nicole to make sure we remembered the information. It was a really great discussion and to be honest, I found it exciting...which is so lame, but it's true! The opportunity to come at Cadence's disease from some different angles. We touched on a fair bit of topics that are frowned upon by some CDE's but in this discussion, we learned the reasons why we all do it incognito. For instance, pre-bolusing 20 minutes, overriding the pump recommendations based on instinct and experience, acceptable blood glucose departures 2 hours post meal, etc. It was great. The only issue I have this morning is that pile of stuff I had to do last night....is still sitting on my desk but i'm going to try and attack it from a couple new angles.

B.

Stats.

I've been asked to give the keynote address at the Alberta Diabetes Foundation Rations for Riches event tomorrow at the Calgary tower. 10 minutes to share what diabetes is to our family. I'm going to do a blog post in the next couple days to describe the room....I'm kind of nervous, but it's an excited nervous....it's an opportunity to change perspectives.

I had to dig up some stats tonight for the keynote and even I was amazed by what I found.

- 300,000 kids with Type 1 diabetes in Canada.

- 3-5% increase in diagnosis rate per year (that's how you spell epidemic)

- 17 BILLION dollars per year towards diabetes complications yet the Alberta government doesn't cover a single dime of preventative measures. Seriously.

- in the 10 minutes it takes me to speak tomorrow morning in front of all those hungry people, 120 kids worldwide will develop diabetes...and most of them will die from it.

It has to be stopped. Get behind JDRF, ADF, CDA, educate, learn, be part of the solution.

till tomorrow!

B.

I'm back

It's been awhile since i've posted and I have finally figured out why.

There are many reasons and excuses I could throw out there, a business purchase, crumbling professional relationships, family non-D stuff...life is busy. The reason I've been delinquent about blogging is that I wasn't sure what to write. I had a comment from someone who said, is there anything that diabetes doesn't affect? I had to think about that question and for the longest time I sat looking at the cursor trying figure out what to write about that was fun, light, not related to diabetes. Well...the cursor still blinks. Don't get me wrong, there's a majority of our lives that are not related and certainly more that we don't let diabetes affect. But that's not what I write about, that stuff is awesome. LIFE IS FANTASIC IN EVERY SENSE. Diabetes is like cousin Eddy though...always there dumping his sewage tank out of his RV and spilling it onto your beautiful lawn. That's why I vent about it.

I write this blog for me. This blog is a place of emotional catharsis. It's used to be my little internet backwater that I never thought would be read, yet I get questions and emails regularly about the content. Being the parent of a diabetic is lonely place, it's a hard disease to spot. I write this blog for us I suppose and it feels good to do it. I've connected with many others that live in the same world through detailing our times of good and bad in the last 3 years of the D. I trended away from the purpose of this page, thinking that this blog had to evolve into other things. I was wrong. This blog is for me and the Diabetics, and especially the parents of, in the world that need to know there are others out there that feel the way we feel...and you know what? It's okay.

Guilt is a horrible feeling. I felt guilty that I hate diabetes more than my daughter hates it. I felt guilty about not checking her blood sugar last night because I desperately wanted to sleep...I felt it was selfish to put my need for sleep over her long term health. Granted she's 4 years old but she still feels the lows and highs. Nic and I feel bad d-days where we just throw our hands up and say "fuck you diabetes". Keeping in theme, I imagine me like Clark Griswold talking to Cousin Eddie, "maybe drive you out to the desert, leave you for dead." without Cousin Eddie picking up the reference. I think alot of parents feel this guilt and fear expressing their feelings for fear of being told "you're not the diabetic". A man whom I'd like to call a good friend, even though we've only met twice, is a 50 year old diabetic. He said "I think, as a diabetic, it's harder on the parents that it is the kid". To hear that from someone that has the disease was in part sad but in many ways brought relief and validation that it is okay to hate it, it is okay to be angry, and it is okay to feel helpless at times and hurt for my daughter.

So, I'm back and I'm not over diabetes, never over the fact that it will try to define my daughter's life, and no...as of Thursday morning, the answer to the question "so is that diabetes settling down, you've got it under control?" will still be answered in the fashion of: the last time I stabbed her tiny finger and took her blood, it was, but I'll let you know in 2 hours.

b.

dead in bed.

I'll admit I'd never heard about the "dead in bed" syndrome until a coupled days ago when a 13 year old girl with Type 1 diabetes went to sleep with a good blood sugar, in great overall health, and never woke up.

I will make no attempt to understand what the parents of this girl must be going through. I have myself watched my daughter's life flicker and come to within seconds of ending in my arms... is an image that I will never be at peace with. To actually have your child torn from you without an explanation, a cause, or a reason is unimaginable. Once again, diabetes gets off without a mark on it....dead in bed syndrome has no official cause but is responsible for 20-60 deaths per year or the equivalent of 6% of all deaths in type 1 diabetics under the age of 40 years old.

6% of type 1's die for no known reason. The assumption is that overnight hypoglycemia is to blame. But not diabetes, amazing. This was not the fault of anyone's, certainly not the parents, they did exactly what they should have...it's just one of those things...except that it's a young life ended shortly and without closure. I pray for their family that they can be a peace with this tragedy.

Over the last few weeks, out of a sheer desire for a full night's sleep, I have skipped Cadence's 2am blood test a couple times....3 years of an alarm at 2am 7 days a week, I needed a bit of break. To read this horrific news reaffirms that we need to be vigilant about our kid's blood sugars. Their life literally depends on our diligence both in the short term (dead in bed) and the long term complications. We also need to galvanize our efforts as warriors against this disease, educate, fundraise, lobby for a remedy. Just this morning a huge segment on our local news channel about the rising costs and complications of "diabetes" without identifying the types! It was from the Canadian Diabetes Association which is almost entirely type 2 focused, talking about prevention of long term outcomes and the cost of 2 billion dollars a year to the province. What they did not mention was that the Province of Alberta doesn't cover a DIME of type 1 prevention costs, insulin, test strips, syringes, insulin pumps. People who can't afford to protect their children, have no other option but to choose conservation of test strips, re-use a syringes, squeeze another few weeks out of that vial of insulin. It's not right and has significant consequences.

Teach people at every opportunity that Diabetes is multifaceted and needs the attention of citizens, our elected officials, the change needs to come, come swiftly, and be significant in order to prevent another young life ended without a reason.

Learn on November 14th for World Diabetes Day.

b.

A Little Slice of Peace

One thing that most parents of a diabetic fear is the night. Most parents put their kids to bed, sink into the couch and enjoy the time of no-kidness for a few hours. If you're a parent of a toddler diabetic...you play the "what would a pancreas do?". Bedtime, blood check, DECISON = snack, basal, or bolus and what's going to be best while she's unconscious for the next 8 hours. Lots of decisions to make.

For the last 3.5 years, I have set my alarm clock 7 days a week for 2am. I get up, walk down the hall to Cadence's bed, slowly creep in, pull back the covers to find her feet, lance her toe, squint to see the blood drop in the dark (c'mon testing light!!), see the number and decide what to do - DECISION - bolus, basal temp, wake to juice. Then I go back to bed, close my eyes...debate my decision...stay up for another 45 minutes because now I'm awake, made some mental calculations, started the mental machinery...and I get up at 5:30am for week absolutely trashed. I carry my luggage under my eyes :-) . Have I snuck a full night's sleep in here and there? Maybe once or twice. Usually what happens is I wake up to my alarm, decide not to bother, then lay there for 45 minutes thinking about checking her...then finally get up to do so, stay awake for another 45 minutes...rinse and repeat. LOL it's a never ending cycle of self-fail.

So last night, Cadence, for the first time that I can remember climbed into our bed at 10:30pm and stayed there. Normally this is a habit your don't want your kid to get into but strangely, this morning I'm kind of happy that it did. I still checked her at 2am but she was all curled up right beside me (makes me smile to think about it). The best part was that she was right there, I could hear her, know she's all good and I fell right back to sleep. At 5:30am this morning I had this funny feeling....oh yeah it was rest including piece of mind.

Weird.

Hailey has herself all around diabetes as well, she's been watching and learning for her 14 months of existence. Without the ability to say hi, she now knows the steps to checking blood sugar and gets mad when she's cant do her own everytime Cadence reluctantly has her blood tested - Oh the irony!

b.

Hormone Discrimination

Choose your injectable hormone wisely as it may be discriminated against.

I say that sort of tongue and cheek but it does directly stem from an interesting conversation that I had with the officials from the Calgary Public School system. As Cadence is getting older, she is starting to understand more about her disease and the role that it plays in her life. She is also asking alot more "why" type questions. These are great though, she knows exactly why she needs to have insulin. Being 3 years old, Cadence is getting to the age of going to school. An exciting, yet terrifying destination for us as parents as it will be the first time that we have to loosen our grip on her diabetes. In advance of the day, I wanted to find out more about how diabetics are handled inside of the school system and was quite surprised at the answers...or lack there of that I was provided.

I asked what the policy on diabetics in school is, to which I was told that there wasn't one. I then asked the simple question of whether or not someone in the school would be able to do a simple blood test with Cadence. She's 3 years old and can do it herself, but if someone in the school could supervise it and give her some insulin through her pump, that would be great. I was given the response "our teachers are not trained to do procedures, so no that would not be a possibility, but they will provide juice if required." I retorted "but how would they know if she needed juice without a blood sugar?" and was again hit with "our teachers are not trained to do procedures."

The conversation was stalling at this point so I tried to angle it a little differently. I said "okay, so if a teacher were willing to learn, based on my instructions to do a blood test and deliver insulin based on my direction, would that be okay?" Again, I was given the "our teachers are not trained to do procedures line.".

My frustration is growing a bit here, I can completely see their point on the issue: blood, DECISIONS, and most of all LIABILITY. So I asked my question a different way. "Alright, so if you have a child with a severe peanut allergy that eats a peanut butter sandwich because they're hungry, how would that child get an epi-pen or epinephrine injection?" I received this puzzler:
"All of our teachers are trained to use an epi-pen to an allergic child"....sounds like a procedure to inject a hormone doesn't it.

Giving juice to a diabetic is the same as giving a kid with a peanut allergy a peanut butter sandwich because they're hungry. The difference is how your chosen life-saving hormone is classified.

I asked them, what's the difference if the two are just injectable hormones? If Cadence did her own bood test and she required a set pre-set bolus of insulin...what would be the difference between an epi-pen and an insulin pen?

There was some dead air on the phone for a minute...and then...."our teachers are not trained to do procedures, as I've mentioned before, but let me give you the Principles number."

What's your school's policy on Diabetes?

B.