Lunar-Bound Blood Sugar

It seems we are to burn the midnight oil tonight, battling a high blood sugar - 18.8 mmol/l to be specific.  I’m not sure why this high has materialized on a night I would have wagered would be an “in range” one.

But as I look out my window into the night sky, I wonder...


...could this be to blame?

Well, moon?  Do you know anything about these blood sugar shenanigans?  You’ve been blamed for crazier things...

Walking The Walk

This weekend was our JDRF walk to cure diabetes and it struck me how my feelings related to this day have evolved with each passing year since Jenna’s diagnosis. 

For three years now we have attended in some capacity and each year I have experienced sudden surges of emotion while in attendance that force me to breath deeply and center myself, lest I burst into a teary, fragile mess.  Something about a gathering of people affected by the same life challenges we are with hopes of a cure in our hearts causes my maternal heart to swell.   Of course, nothing compares to the raw emotion I felt the very first time we attended.

The first walk was only a week after Jenna’s diagnosis.  We were still in shock.  I hadn’t started a team; I hadn’t canvassed for pledges; I hadn’t even completely unpacked from our four day hospital stay just yet! I was still trying to wrap my head around how this happened to my little girl.  

Upon our discharge from hospital our Diabetes Nurse Educator informed us that a walk was scheduled to take place in our area in just a couple of days.  She encouraged us to attend to network and meet other families like us.

  

So that Sunday we packed our brand new, hospital issued, Accu-chek backpack full of all the stuff we had been supplied with that was now a part of every single outing we would take from that point on, and we headed to the park where the event was in full swing. 

We arrived late.  The stragglers were just trickling in - returning from the 5k walk.  But most of the people had already returned and the announcer on the bandstand was in the process of drawing names for the prizes they were giving away.  There were several tents set up with different meter and pump brands displayed.  Each company represented had some branded item to send us home with, gratis.

It was all so very strange.  So surreal.  I felt like an alien on another planet - like we were the only ones new to this.  Everyone else seemed to know each other.  Everyone looked relaxed and happy, as if they were attending a family reunion.  But we felt like fish out of water (except for Jaz and Jenna who were intrigued by the slight “carnival” feel to the whole affair.)  Yet I wanted to reach out to people.  I thought of all places, this would be a place to find understanding and comfort.  

Sometimes I think it was just too soon.  We were in a very different place than the majority of those in attendance.  We had one brief heart-to-heart with a rep from Accu-chek.  He asked us how long since our daughter was diagnosed.  We told him, and after his eyes widened at the realization of just where our headspace was, he promptly dropped handfuls of 10-count test strip sample canisters into one of the branded bags we had been loaded up with as we aimlessly drifted from one company tent to the next.  

I was touched by this gesture even though it was mainly the promotion of yet another product, which shows just how hungry I was for some empathy and compassion.  Not that I wasn’t grateful to have some freebee goods thrown our way.  It just felt so strange to be a part of an event that was supposed to be geared toward finding a cure for this life-threatening disease.  But at every turn I encountered corporate sponsors promoting the stuff aimed at managing diabetes - not curing it.  And short of displaying a sign that said “We are new to diabetes and we are hurting.  Please hug us and tell us it will be alright,” no one there had any way of knowing our situation.  Consequently, no one offered us any encouragement or comforting words.

Last year, we did register a team with JDRF.  We canvassed.  And the support we received from family and friends was overwhelming.  When we arrived to the walk we checked in and an older woman seated at a table, wearing a JDRF hat and t-shirt found our team name on the computer print-out.  

“ooOOOOOooooh!  Well done! Thank you very much! “ was her reaction when she saw the amount our team had raised. 

I was given an incentive claim slip and instructed to take it to another table where I was told I could claim my “incentive prize” for the amount of money I raised.  

Incentive prize?!  What’s THAT about?!  

I didn’t want any prize, unless a cure counts as a prize!  It felt wrong to accept a prize for raising money to fund research to find a cure for the chronic, life-threatening disease my daughter has.  It seemed to cheapen what I had done.   

But they gave us our JDRF backpack anyway.  A few weeks after the walk it came in the mail.  It’s pretty nice.  We use it quite a bit, actually.  But in no way does it hold a candle to the incentive of finding a cure.  (Did I even need to write that?) But that’s just how ridiculous the whole idea of an incentive prize is to me.  And every time I look at that backpack I wonder if a portion of the funds raised has been used to purchase these “incentive gifts”.  

Money that was given to help find a cure is instead being used to buy thank-you gifts?!  Banish the thought!  It couldn’t be!  These gifts must be donated.  

This year we made t-shirts.  I wanted to get my girls involved in the event and I thought t-shirts would be the perfect way to do that.  And it was.  They loved it.  We all wore homemade t-shirts and received numerous compliments on them both at the event and afterward.  

We all wore the t-shirts for the entire day and I was surprised to learn just how effective t-shirt messages are at bringing about awareness.  

After our walk we headed to a grocery store to pick up a few things for dinner that night. J and I were asked on two separate occasions to explain our t-shirts.  We capitalized on the opportunity to spread some information and answer questions.  

On yet another occasion J was in a store attempting to locate an allergy medication for Jenna as she has been suffering particularly badly this spring, and by chance met up with an old work colleague who happened to be in the store at that time.  They chatted briefly, catching up on each other’s lives and the colleague commented on J’s shirt.  J explained about the walk we had just completed to find a cure and his friend said “Oh that’s right.  Remind me...what does your daughter have?”

“Type 1 Diabetes.”

“Right.  Well, I’m glad it isn’t something life-threatening.”  He replied, sounding relieved.

“Well, actually, it IS.  Hypo and hyperglycemia are both very life-threatening conditions and are common among type 1 diabetics.  Not to mention the long-term complications that can result from  years of unstable blood sugars.”

The shock his friend expressed at finding out how serious type 1 diabetes is serves as yet another example of the lack of information the general public has with regards to this disease.  It’s also another glaring reminder that we all must be prepared to educate and inform.  I was proud that J seized the opportunity to enlighten his friend.  It is this kind of ignorance that causes indifference among those not touched by type 1 diabetes.  

Of course, this year I was given an incentive gift - again.  And again I found myself feeling guilty for accepting it.  But I rationalized that it is most likely something donated to JDRF by their corporate sponsors.  JDRF can’t be purchasing these gifts with cure money!  Besides, I can take those gift cards and buy my girls some clothes.  That way the money is being put to good use. 

Then, by sheer coincidence JDRF emailed me a survey yesterday as I was composing this post.  They were looking for feedback regarding how I felt the event was run.  Some of the questions were related specifically to the issuing of incentive prizes.  Among other things, they asked if I felt the prizes were important to my participation in the event, if I was aware that JDRF had to purchase these prizes, and if I was aware that I could donate the prize back to JDRF to help redirect the funds back into research for a cure!!  

I instantly felt all kinds of foolish.  

DONATE THE GIFT BACK!  Of course!!  Why, oh why didn’t I think to do this or at least inquire as to how the prizes are obtained by JDRF?  

So next year, barring the discovery of a cure, (I know, I know, but I’m trying to be optimistic here) I will be participating again in the JDRF Walk To Cure Diabetes.  I will campaign as I have done these past two years.  I will take it a step further and attempt to organize a fund raising event myself for the first time.    And next year I will enthusiastically donate my incentive gift BACK to JDRF.    

Oh.  And by the way, I was sure to let JDRF know in their survey just what I thought of the whole “incentive prize” concept too.  I hope more people consider donating their prizes back to JDRF so the funds can be redirected back to their intended purpose: finding a cure for type 1 diabetes.

Sick of Lemonade

I’m usually a relatively upbeat person.  I don’t complain a whole lot.  I try to look at the positive side to otherwise negative aspects in life.  I strive to make lemonade out of all those damn lemons we all get hurled at us now and then in life.  That’s what we’re supposed to do.  Right?  

I mean, I have even tried to put a positive spin on Jenna’s diabetes when naming my blog.  The very first blog post I wrote explains how the name came about.  It was my attempt to make sense of what was happening to my beautiful baby girl.  I knew from a nursing perspective what type 1 diabetes was all about, but from a parent perspective?  Not so much. 

I haven’t really experienced any prolonged feelings of anger or rage about Jenna’s diabetes.  I’ve certainly had acute bouts of anger born of frustration, like when I’m getting up every two hours in a night trying to deal with a stubborn high blood sugar (such as tonight, which is why I’m up blogging.)  

But if I were to describe my overall feelings with regards to Jenna having diabetes it would be that of profound sadness.  Sadness of a grieving nature.  The kind of sadness that caused me to lose a shocking amount of weight after her diagnosis because the thought of eating made me ill.  I was actually angry at food for a while after her diagnosis, oddly enough.  But I never blamed anyone for her getting this disease.  It is what it is.  And tragically, Jenna is one of millions of people who suffer with this damn affliction.  We all know diseases such as type 1 diabetes are out there but none of us truly believes it could happen to our child.

I try to be positive about it though.  Mostly that’s for Jenna’s benefit.  I certainly don’t want to be a bitter, angry Mom due to her diabetes.  That would only make her bitter and angry or perhaps she would eventually feel responsible for being the cause of my negativity.  I wouldn’t want her to carry that kind of burden on top of what she already has to cope with.  Also, I don’t want Jenna to ever think she should be pitied or that she can use her diabetes as an excuse for why she can’t do something.  That would be like clipping her wings.  And she was born to fly.  

I have stated in a previous post that I have learned to accept her diagnosis.  But that should not be interpreted as me being okay with the fact that my little girl’s pancreas has been attacked by her own immune system and, as a result, no longer makes the insulin she requires to live.  I am absolutely NOT okay with that.  It merely means I have dealt with the initial shock and overwhelming, crippling sadness that I once felt.  I had to do this in order to carry on and be the mother that my two little girls need.  

Type 1 diabetes is an incredibly misunderstood disease.  Some believe it can be brought on by eating too much candy.  Others think that once someone is on insulin they are cured.  Still others believe that in this day and age, no one dies of type 1 diabetes anymore and if someone does die, well, he probably didn’t take good enough care of himself.  All of these beliefs are false. This disease is chronic, constant, relentless, unpreventable, unpredictable and, as yet, incurable. 

Living every day with diabetes is like living with the Grim Reaper standing just a few feet away from you - quietly, patiently, biding his time, waiting for an opportunity when you aren’t looking... 

Some nights when I can’t get Jenna’s blood sugars to come down and she starts showing ketones in her blood, or when she has a scary low that I was lucky enough to catch, I sense that death has briefly take a step closer to my baby girl.  It terrifies me. 

Some people who don’t know might think that is a bit dramatic.  I’m sure most people with type 1 diabetes would agree with me when I state emphatically that it is not. This disease is frightening.  And what makes it so frightening is how much diligence, care and conscious effort it requires to stay safe and healthy all day, day and night.  Every.  Single.  Day.

But the real bitch of this disease is that no matter how much care and diligence is taken, sometimes people with diabetes still die.  Just in the past two months alone I have been made aware of three deaths of young people with type 1 diabetes.  The youngest victim was a 13 year old boy with his whole life ahead of him.  I have a lot of difficulty reading about these tragic stories, for reasons that are all too obvious.  

I read recently that the most common cause of death in young people with diabetes is from insulin reaction, causing severe hypoglycemia.  

Imagine that!  Death by the very thing that has saved you countless times in the past!  I can actually remember my emotional reaction many years ago, long before I became a mother or a nurse, when I learned that type 1 diabetics are in constant danger of dying due to insulin overdose.  I was horrified!  What kind of sick irony is THAT?  And now I’m the mother of a child with type 1 diabetes.  And I get up multiple times a night to make sure my little girl is safe and her life-saving treatment isn’t poised to take her life.  Or conversely, that her treatment is doing it’s job and protecting her from diabetic ketoacidosis - another deadly condition that can develop from not enough insulin.

People are uncomfortable when someone speaks to them of an unfortunate event or circumstance that they are coping with in their life.  Often the person listening feels compelled to offer a reply of “Well it could be worse, you know” or “You think you’ve got it bad!” as if pointing out why someone’s misfortune isn’t as bad as someone else’s is actually helpful.  Really, this approach serves to help no one but the listener, easing the discomfort they feel from not knowing how to respond when someone else has experienced something shitty in their life.  So to spare people that discomfort and to spare me having to hear, yet again, why someone thinks I should be grateful, I don’t often focus on the dark side of this disease.  I put forth a positive, “this won’t bring us down, no sirree!” type of front.  No one likes a complainer.  

But I’ve bared a  little more of my soul in this post.  Even though I am, in fact, grateful, probably more so than the average person,  I’ve shared some of the darker side of type 1 diabetes. Because the fact is, most type 1 diabetics are the furthest thing from being complainers.  They are SURVIVORS.  They are incredibly courageous people who cheat death every day of their lives.  They endure frequent bouts of physical and emotional stress.  They are performing a never-ending tightrope act with no safety net.   They deserve to not live in fear.  They deserve our respect.

And they deserve a cure.

The Annual Vegetable Garden Post!

With summer only days away I feel compelled to discuss a topic I broached last spring.  Gardening.  I love it.  And my goal is to have my girls love it too.

Last year we planted our first real vegetable garden.  I’ve worked on farms and I’ve had flower gardens and certainly I’ve grown deck gardens that included herbs and tomatoes in pots, but as for a proper GARDEN - garden, last year’s was the first.

It was such a huge hit with my girls.  Not only did they help plant and tend the garden (at least until the novelty of weeding waned) but they also enjoyed the fruits of their labour. They had a great time playing in the back yard then heading over to the carrot patch or the tomato plants at their leisure and pulling or plucking the treat of their choosing.  There is something strangely satisfying about extracting a vegetable from the ground - a vegetable that you’ve grown yourself!  It’s right up there with collecting eggs from a hen house or feeding a baby goat - two experiences my girls have been fortunate enough to have had. 

So, in light of last year’s success, we’ve expanded our vegetable garden and included a few veggies we didn’t try last year.  We dedicated one whole plot to potatoes.  And my goodness are those potatoes happy!

We are also attempting beets again this year.  Last year’s beet crop failed.  I’m not entirely sure why but I suspect it resulted from a prolonged heat wave that hit around the same time we were on vacation and the garden didn’t get the watering it should have.  This year’s crop seems to be faring better.  In fact I have recently pulled the very first official beet myself, washed it and eaten it, greens included, standing right there in the garden.  It was delicious. 

We are also growing onions, radishes, lettuces, broccoli, zucchini, tomatoes, garlic (love garlic!) and of course carrots. 

The great thing about the garden is it’s sort of like a “diabetes-free zone”.  Jenna is allowed to eat at will with no pre-snack check (unless I suspect a high or low, of course) and no bolus.  Yes, I realize that certain veggies have significant amounts of carbs in them, but this is just one sacred area I like to minimize her diabetic burden. There really is no better way to turn a kid on to vegetables than to have them eat them freshly picked.  So, to awaken the vegetable-lover in each of my girls I try to keep the garden as positive and as free a place as possible.  Besides, when she’s outside, Jenna is active - running through sprinklers, skipping, playing tag.  She is more apt to burn through the few carbs she might get from her garden snacking.  So it balances out, usually.

And speaking of carbs balancing activity,  I’d like to share a couple of pictures I took in the garden this week of a creature that burns the sugar it’s diet is chiefly comprised of as it is eaten!  This little hummingbird really took to the camera and allowed me to get several amazing shots as it fed on the nectar in my Red Valerian. 

Thanks for photo-op, little hummingbird!  

Happy gardening!

Two Years

Today marks two years since Jenna’s diagnosis with type 1 diabetes.

Two years of lancets, alcohol swabs, insulin pumps, test strips, carb tabs, carb counts, carb factors, infusion sets, insertion devices, reservoirs, combo boluses, corrections, injections, calibrations, calculations, insulin to carb ratios, sensitivity factors, tangled tubing, occlusions, site changes, ketones, glucose meters, air bubbles, rebound highs, stubborn highs, delayed highs, sickness highs, highs for no damn reason at all, lows, scary lows, persistent lows, tummy cramps, tears, worry, sleeplessness, aging and living from one blood sugar check to the next.

But it has also been two years of laughter, celebration, love, growth, learning what really matters, being thankful for the good numbers, finding the balance, fighting the good fight, making new friends, offering support and getting some in return, eating healthfully, finding beauty in simplicity, discovering hidden strength, realizing that the greatest growth comes from overcoming challenges, learning to live in the now, being truly grateful for good health, understanding how good life is.

Diabetes isn’t something I would have chosen for our family.  And there is no denying the challenges it has presented.  But it has also afforded us great opportunity.  In some ways it has been a gift, as strange as that sounds.  

Diabetes is merely one fibre in the vast fabric that is our life.  

And what a beautiful fabric it is!

I've Always Wanted to Be a Superhero

The Diabetes Online Community or DOC, as it is affectionately called, is a plethora of talented, colourful people, each bringing something uniquely his or her own to the diabetic table.  This is an amazing group of people to be connected with.

I recently became aware of yet another talented member of this incredible, diverse neighbourhood.  Chris Bishop is the author of Type 1 Tidbits and he has created a really cool blogroll.  Each blogger listed has a superhero avatar - the message being that we are all superheroes, those of us who fight the good fight with diabetes every single day.  I can get on board with that.

Chris is not only a talented person with type 1 diabetes, he is also incredibly perceptive!  He's never met me in person yet here's my superhero avatar:

That's me in the purple get-up with the hot pants and the bitchin' boots!  How badass am I ?!

It's like looking in a mirror.

A Hero Among Us

I talk a lot about my youngest daughter, Jenna, on this blog.  You know, the one with diabetes.  But this post is mostly about my oldest daughter, Jazmine.   She is one special kid.  Once you read this, I'm sure you'll agree.

Yesterday morning Jazmine and Jenna were downstairs playing.  I had showered and was drying my hair when Jazmine appeared at the bathroom door, wide-eyed and looking intense.

"Jenna was all whiny, weepy and crying for you, Mom, so I checked her and she's 2.8" she explains in a calm, yet earnest manner.

Before she even got the entire sentence out I was sprinting down the hall toward the kitchen to raid the stash of carb tabs I keep in the coffee/plastic dish/spare keys cupboard. (There's no rhyme or reason to my kitchen cupboards, in case you are wondering.)

"Good job, honey!  You're one awesome big sister!  I'm so proud of you!"

I grabbed a couple raspberry carb tabs and headed downstairs.  Jazmine, beaming with pride for her cleverness and quick-thinking, was hot on my heals.

"I want to give her the carb tabs , Mom."

"No problem!"  I handed her the carb tabs and let her take the lead.  I'm not exactly sure why it was important for Jazmine to give Jenna her antidote but I respected her need to see this mini-crisis through to the finish.  She had single-handedly identified the signs, took the initiative to conduct a blood sugar check, interpreted the results to be low and requiring immediate intervention, then quickly alerted me.  So I hung back and watched as Jazmine fed her little sister two carb tabs and offered comforting words to her while she chewed the chalky-sweet remedy she so badly needed.

We sat together for a while afterward, the three of us.  I held Jenna in my arms as the sugar worked its way through her system, easing the symptoms of her hypoglycemic state.  I told both my girls how proud I was of them - Jenna for allowing her big sister to do the blood sugar check, and Jazmine for being so responsible and using such good judgement at the tender age of 6.

When I shared this with my facebook friends I received some wonderful feedback that I was sure to share with my girls.  Someone said what a lucky Mommy I am.

I couldn't agree more.