The song beneath the song

In this post I wrote a few months ago, I talked about all the things we do to try and get diabetes to behave that outsiders don't see, and how exhausting it can get.

When you look at the graphs below, you think, "hey!  Not bad.  Those are some pretty good after breakfast and lunch numbers!'

And you know what?  They are. But what we've been dealing with over the past week is anything but nice.

Strep.  High fever.  Ketones.  BGs in the 400-500 range.  Antibiotics. Blah.

Over the past week, through trial and error, I've discovered that we can hold off those high BGs by bolusing her for double what she eats (so if she has 50g of carbs, I bolus for 100g).  And starting at 1:00 pm, I run a 50% temp basal (so her basal + half for non-podders) for the rest of the day.

The result is today's decent looking graphs.  But the back story on those pretty numbers contains a lot of fear.

It's scary because at dinner, when she eats her most carbs, I am dumping a tonne of insulin into her.  Just before she goes to bed.  

Just before we go to bed.

Actually, I'm chicken when it comes to dinner and don't bolus x2.  Last night I bolused for 140g when she ate 80g and she STILL hovered around 350 until we did multiple corrections.

On this last day of World Diabetes Awareness Month, I wish that people would get what a double-edged sword insulin can be.  Yes, it saves my daughters life.  She cannot live without it.  But it can also take her life if I don't tread carefully.

It's a pretty frightening dance and I'm trying my hardest to sense when diabetes is changing the beat on me.

Even 7 years later, I'm still learning the moves to this dance.

Today

***This is a re-post of a blog I wrote 3 years ago.  It's just as true today as it was then.

This is my daughter, Elise.  She is 8 years old. She loves to play soccer.  Paint and draw.  Read.  She loves to dance and sing.  Making her little brothers laugh. The colour green.  Roller-coasters and waterslides.  She's a girly-girl with a tough side... the absolute best of both worlds. 

She makes me laugh.  Loves everyone she's ever met. Blows me away with how smart she is.  She has the innate ability to drive me bananas, but at the same time; I am so very proud the be her Mom.  And today, she makes me thankful.

Without today, Elise would not be alive.  If it wasn't for today, I would have had to say goodbye to my first-born over 7 years ago.  If today had never happened, this would be one of the last pictures I have of my daughter...

During a month that is supposed to be filled with thanks, I am most thankful for today, November 14.

Because on this day, in 1891, a baby boy was born in a small farm house in Ontario, Canada.   He would grow up and make an astonishing discovery that would save my daughter's life 119 years later.  Not just the life of my daughter, but the lives of countless others too. 

Because in addition to everything I wrote about her above, Elise also has type 1 diabetes.  Her body NEEDS insulin to survive, but no longer produces it. 

It was nothing she did. Or didn't do.

Nothing she ate. Or didn't eat.

There is no cure.  No special diet.  No secret spice.  There isn't a bark that grows on a tree that can be brewed into a tea.

But there is insulin.

Today, I don't have to watch my daughter literally starve to death because of a faulty pancreas.  And that is why I am thankful for today, the birthday of Dr. Fredrick Banting; inventor of insulin. 

He saved my daughter's life.

Lucky Ones

We live in a country where we have access to the latest and greatest diabetes technology.

We are some of the lucky ones.

My husband has a job that provides us with health insurance.

We are some of the lucky ones.

We're able to afford a CGM and necessary supplies for our daughter.

We are some of the lucky ones.

If we ever ran out of any of our supplies, we have a whole community to turn to for help.

We are some of the lucky ones.

Our support team of doctors and nurses are pretty amazing.

We are some of the lucky ones.

Insulin is readily available to us.

We are some of the lucky ones.

My daughter's diabetes was caught very early on and we didn't have to suffer through the horror and agony of DKA or the PICU.

We are some of the lucky ones.

We have access to people that will help my daughter through the emotional toll diabetes can take.

We are some of the lucky ones.

For us, diabetes is not a death sentence.

We are some of the lucky ones.

As hard as diabetes is, I always have to remind myself of the people who are not as fortunate as we are.  For people in developing countries, diabetes can be a death sentence, and that's why I'm thankful for the work the International Diabetes Federation does through the Life For a Child Programme. And while I am all about supporting those who are working to find a cure or ways to make life with diabetes easier, we can't forget those who barely have access to the medicine they need to live.  IDF is currently helping over 17,000 children and youth with diabetes in 46 countries by providing supplies and education.  Please go to their website to donate or find out more about them.  

Nine. Times.

It was 1:45pm on Monday when I started this post.  As of 10 minutes ago, I have been on the phone with our school nurse 9 times.  Nine. Times.



The first call was around 8:00 this morning, only 15 minutes after school started.  The reason?  Elise was low. I honestly can't remember the number because there are so many from today, but she was below 100.  Only an hour after eating.

Even though I changed basals and I:C ratios (so she'd get less insulin), she only topped out at 120 after breakfast.

The rest of the day so far has followed suit.  Low after low after low.  In fact, I'm expecting a call soon, since my watch is telling me she's dropping.  Again.

All those spikes you see were from the many, many carbs consumed.
But she always came right back down

Now it's Tuesday, about 24 hours later.  I never finished the post yesterday because... well, life.  And again, I've been on the phone with the nurse nine times.  Including one phone call where Elise was 51 in P.E.

As much as this sucks, I am very thankful we have probably the rocking-est (is this a word?  No?  I care not) school nurse in the history of ever.  We are the lucky ones.  I have heard from so many parents how care at school is a battle, the nurse isn't helpful, and things being done to their child are downright illegal.  

We are contemplating moving to another state.  I am unfamiliar with the laws and unsure of the protections that exist for Elise there.  I do know that right now we live in one of the best states when it comes to protecting our kiddos with T1.  

It shouldn't be this way.  There are so many struggles when it comes to diabetes; finding an endo you gel with, getting the supplies you need, insurance battles... the list goes on.  I'm lucky that when I send Elise off to school, I know she's in amazing hands.  Not everybody has this and it hurts my heart for them.

This month, I am thankful for so much.  But after what we've been dealing with over the last few days, our nurse is at one of the top spots on my list.  If you have a good one, make she she/he knows it.  If you don't... well I'd be shouting that from the rooftops too.

And I think a certain nurse will be getting a "just-because-you're-awesome" gift tomorrow.

Second verse, same as the first... but worse lows this time

My new job title

Conversation with Elise yesterday:

E: S told me that his mom is an art teacher.  I told S that you are a diabetes teacher.

The hours suck, and so does the pay.  There's no time off and the work itself makes you crazy.

But there's nobody else I'd rather work for.

Watch me meme

Awhile back, I was asked if I'd like to contribute a meme to the T1 Everyday Magic website in honour of World Diabetes Awareness Month.  After looking up what a meme was (I kid!), I agonized  over what my submission would look like... should it be funny? Mention poison cookies? Should the humour be subtle, yet sprinkled with sarcasm?  

Click here to find out, and to see some other great memes from some pretty cool DOC peeps.

A witch, a ninja, and Dusty walk into a bar...

Under the influence of candy and the trick-or-treating hasn't even started yet.

These blood sugars are brought to you by hours of running around and over 30g of uncovered Halloween treats.

And what you don't see?  The continued lows all night; including a 72 at 10:00 pm, a 62 at 1:15 am, and a 64 at 5:30 am.  Thank goodness we're all stocked up on sugar here.

National World Diabetes Awareness Month

Before you use diabetes as a joke or a punchline, think about Elise, and the millions of children and adults like her who struggle everyday with the burden of diabetes.

She did not cause this.

She won't outgrow it.

There is no cure.

It is 24/7/365.

And if you can eat something, then so can she.