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Tuesday, July 19, 2016

Just Don't Say Nothing

This past FFL was a hard one to go to.  Two years ago, I was 15 weeks pregnant with my fourth child.  Two weeks after I came home from the conference, I lost the baby.  The Marriott is full of bittersweet memories.

As I was on my way to one session, I passed a seating area that I remembered from two years ago.  There I had sat, flanked by two of my wonderful FFLs, talking with Joe Solo.  I was feeling so tired.  But so happy.  I could feel my baby kicking, and it was wonderful.

This Thursday marks the two year anniversary of the day Nicolas was born still.  And much like most sad anniversaries, diaversaries included, it will pass largely unnoticed.

This post really isn't directed towards those living with D, but those of you who knows someone who does.

Anyone who has had something sad or bad happen to them, knows that most people don't know how to respond.  As the "anyone" in the last sentence, let me give you this nugget of wisdom:

Just Don't Say Nothing.

Even if the diagnosis was years ago, they still might need your words.

Sometimes when they're living in the mundane, everyday of their life, they need to know that someone is thinking of them, and caring about their struggles.

They need to be seen.

I'll never forget the time I was out at a restaurant with Elise when she was a baby.  I had checked her BG, given her a shot and fed her.  Towards the end of the meal, an older gentleman came up to me and said, "I think you're doing a wonderful job, mom."

Oh. My. Gosh.  The tears.  He saw me.  There I was, just doing what had become routine (a very crappy routine), and he saw me.

And Said Something.

After I admit that I've been struggling, people often ask me, "why didn't you say anything?"

My answer is this; sometimes, you are too busy drowning to scream.  When you're drowning, it takes every ounce of what you have to just keep your head above the water.  You don't have the energy to scream.  You need those who are around you to look up and take notice.

You need to be seen.

While I was at the conference, a friend mentioned my blog, and talked about Nicolas.  And you know what?  Mentioning Nicolas didn't make me sad.  I'm already sad.  My heart already hurts.  Speaking his name cannot break my heart anymore than it already is.

No, talking about Nicolas brought me joy.  Because someone remembered him.  My friend "saw" him. And by doing so, saw me.

Just Don't Say Nothing.

I've also experienced the opposite; friends that are completely tuned out.  And their silence speaks volumes.  

If you know someone with diabetes, or who has a child with diabetes, or a spouse with diabetes, or is dealing with some type of heartache:

Tell them you see them.

Tell them you love them.

Let them know they're doing a good job.

Just Don't Say Nothing.

Wednesday, July 13, 2016

Miss In-D-pendent

One of the things I love about going to Friends For Life (post-conference wrap-up to be posted soon... I hope), is how it not only renews my energy and hope, but it also gives Elise a boost in self-confidence in taking control of her own care.

She's shown signs of this pre-conference; not having to be asked to check her BG before a meal, entering the carbs and bolusing herself, and even helping me to count the carbs. Gone are the days of total dependence.

Sure there were slip ups... like the time she was bolusing herself for her lunch, and she somehow pressed the up arrow on the amount of insulin to be bolused, and received double the insulin she was supposed to get.  The only reason I caught this was because after she finished eating, dex was showing double arrows down. Which led me to investigate what had happened on her PDM.

It took a few minutes of blinking stupidly at the PDM, but I eventually figured out the error and bonus carbs were dispensed.

Have I mentioned how awesome the dex is lately?  No?  I apologize... thank you Dexcom for helping me to keep my daughter safe.  You rock.

Anyway, Elise arrived home from FFL and let me know she wanted to be "more mature in taking care of herself" (yes, those words exactly).  

She decided she wanted to wear my old Pebble watch, so she could keep an eye on her numbers.

She told me she wanted to make food choices that weren't so hard on her blood sugar.

And, unbeknownst to me, she wanted to start doing all the checking, bolusing, and carb counting without any adult supervision.  Oy.

Because of the aforementioned slip-up, we had talked about needing to show me her PDM before she bolused... not because I didn't trust her, but I just wanted to make sure all the numbers made sense.

Well, the other day, after we got back from FFL, the kids were attending their summer camp at the local pre-school.

Side note: This is the pre-school that all my kids have gone to.  They hold a two week summer camp for kids 2-5 years old.  Obviously, Elise does not fall into this category, but because her former teacher there runs the camp, Elise is always invited to attend the camp with her brothers as a helper. Our pre-school also rocks.

During camp, the kids eat a snack and their lunch.  I told Elise she needed to call me when she was going to eat, so we could decide on what to bolus.  The first day I got a text from her with her BG and the carb amount.  Nothing more.  I texted her back asking what her IOB was and what was bolused.  Silence.  So I texted her teacher, who got Elise to call me and let me know her bolus was 1.55 units for 26g of carbs.  Waaaaaaaay to much insulin. I then realized that the snack was early enough in the day that her breakfast ratio was the culprit. I told her to eat some glucose tabs and all was well.

Yes, that one was my fault.  I should have adjusted the time on her breakfast ratio, but I forgot. When she got home, I explained to Elise why it is so important to go over the numbers with me and that was that.

Until the other night.  She was at a friend's house when they decided to have a snack of baby carrots and ranch, without telling the mom.  They had eaten dinner only about 90 minutes earlier, so there was still IOB.  Elise took it upon herself to count the carbs and bolus herself.  

For 80g of carbs.  

She had 10 carrots.  She looked at the carb amount and the package said 8g. So Elise reasoned that if she had 8 carrots... 8 x 10 = 80.  

I guess it's time to have a lesson on serving sizes.  

Luckily, Elise also reasoned that she had enough IOB to cover the carrots, so she zeroed out the bolus and didn't give herself any insulin. Crisis averted, another discussion had. 

I realize this is a very long post, but lately I've been struggling with the "letting go and letting her".  I am all for kids being able to go out and learn from experience and making mistakes... it's just that there's a chance that if Elise makes a mistake and it's not caught, there could be dire consequences. 

Like I've said before, "it's a dance, and I'm doing my best to teach her the steps."

Tuesday, July 12, 2016

Back to Reality

Re-entry into the real world is hard, yo.

Wednesday, July 6, 2016

Friday, July 1, 2016

Happy 149th Birthday Canada!

It all started with a simple picture of my 10 month old daughter holding a Canadian flag.  Now 8 years later, all 3 of my kids proudly wave the maple leaf on Canada Day. 

Tell me what’s a Douglas Fir 

Betcha never heard a bobcat purr

Have you ever seen a lobster crawl?

In Canada, we get to see them all.

We get to see the maple trees, maple sugar and the maple leaves,
We got the biggest wheat fields growing tall

In C-A-N-A-D-A, where we see the reversing falls
In Canada, we get to see them all.

Tell me, what’s a tidal bore,

Have you ever heard the ocean roar?

Just listen to that wild goose call.

In Canada, we get to see them all

We get to see the maple trees, maple sugar and the maple leaves,
We got the biggest timber woods so tall 
In C-A-N-A-D-A, where adventure ever calls,
In Canada, we get to see them all.

Have you ever heard a maple creak?

Betcha never seen a mountain peak.

In the land of the big snowball.

In Canada, we get to see them all.

We get to see the maple trees, maple sugar and the maple leaves,

We got the biggest wheat fields growing tall

In C-A-N-A-D-A, where we see the reversing falls,
In Canada, we get to see them all.

Have you ever seen a magnetic hill?

Or a lady on a dollar bill?

Betcha never seen the autumn fall.

We get to see the maple trees, maple sugar and the maple leaves,
We got the biggest timber woods so tall 
In C-A-N-A-D-A, where adventure ever calls,
In Canada, we get to see them all.

*Lyrics from the song C-A-N-A-D-A by Raffi

Happy Canada Day to all my Canadian peeps out there. 


Friday, May 20, 2016

Diabetes and Disasters... a follow-up

Tips and Tricks - Friday 5/20 

Let's round out the week by sharing our best diabetes tips and diabetes tricks. From how you organize supplies to how you manage gear on the go/vacation (beach, or skiing, or whatever). From how you keep track of prescription numbers to how you remember to get your orders refilled. How about any “unconventional” diabetes practices, or ways to make diabetes work for YOU (not necessarily how the doctors say to do it!). There's always something we can learn from each other. (Remember though, please no medical advice or dangerous suggestions.)

My name is Joanne, and I horde diabetes supplies. 

Remember this post from a few months ago, when I told the story of a co-worker of Fred's who lost his house in a tornado?  I wrote about wanting to organize Elise's supplies in such a way that they would be easy to grab in case of an emergency.

Well, I am proud to say... I did it!

It tok a few days, but here are the pictures to prove it:

The before... yikes
The carnage begins
I found these totes at Costco for about $10 each
Because the dex boxes take up too much space, I bought large ziploc bags and organized the sensors by date
The aforementioned ziploc bags.  I'm entirely too lazy to flip the picture.  Sorry
The totes now reside at the back of our tornado room
So shiny and organized! That paper taped to the door? Instructions on mixing U-20 insulin.  I can't bring myself to take it down for some reason.
I keep enough supplies in the cupboard so I'm not continuously running to the closet, and everything is organized by date, so I know what to use first.  It feels good to have it all together!

Now I just need to keep on top of it as supplies come in.

Thursday, May 19, 2016

Pardon the interuption

I wrote most of my posts last week with the exception of the Thursday post.  I thought I'd get to it at some point before it needed to be posted.

I didn't.

Instead I got bronchitis.  And then the medicine made me sick.  Last month, I broke my ribs playing soccer, and all this coughing and barfing has kinda sucked.

So, instead of a wildcard, I'm playing the sympathy card. I'm hoping at some later point I'll finish up my post.

And thank you for all the comments.  I'm sorry I've sucked at reading and commenting in return.

Wednesday, May 18, 2016

When is a joke not a Joke?

Language and Diabetes - Wednesday 5/18

There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I'm willing to bet we've all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don't care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let's explore the power of words, but please remember to keep things respectful.

I fall somewhere in the middle on this one.  While I prefer saying Elise has diabetes (instead of Elise is diabetic), it is not my hill to die on. 

I will say that when people use "pricker" vs. lancet, I have to suppress a giggle.  Because as I've said before, I have the sense of humour of a 12 year old boy.

What gets me, though, is using diabetes as an insult, or in a derogatory way.  Referring to a dessert as a "diabetes bomb", or "diabetes in a cup".  When I heard that there was such an insult in Hotel Transylvania 2, I decided my kids would not be seeing that movie.

You see, I think it awful to joke about a disease in a way that's ignorant, or helps to spread ignorance. It leads to people actually believing that Elise got diabetes from a piece of cake.   It reduces people with diabetes to a punch line, and that's not cool.

"But Joanne!" You say, "It's all in good fun!  Laugh and the world laughs with you, and all that."

But sometimes, it's not funny.  Diabetes can be destructive; physically, mentally, and financially.  It can go hand-in-hand with depression and eating disorders.  And in the worse case scenario, it kills. Sometimes at random and with no warning.

Too many times it has caused my daughter to cry deep, tortured sobs.  I've held her as she has wailed about how much she hates this disease, even saying she "wants to quit life".

So you'll excuse me if I don't feel like laughing.

Tuesday, May 17, 2016

I am slowly going crazy...

 The Other Half of Diabetes - Tuesday 5/17 

 We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk? (If you are a caregiver to a person with diabetes, write about yourself or your loved one or both!)

I often joke that when I gave birth to my kids, most of my brain must of come out too, because I think I've become dumber with each child I've birthed.

Add diabetes to the mix and it's amazing that I rememeber to dress myself before I walk out the door.  Mentally, I am exhausted.

Over the past two years, diabetes has become increasingly frustrating.  Elise doesn't follow trends.  She is STILL on the same dose of insulin she was when she was 6... her TDD is about 10 units (she usually eats 50-100g per meal).  She goes through periods where we don't bolus her for meals.  Or only bolus by half.  We've never been able to bolus her fully for her dinner.  We do it manually over a period of five hours.  

And then there are the times she's high no matter how much insulin we dump into her.

For about a week, Elise was going high after breakfast... into the 300s and only coming down to the low 200s by lunch.  So I lowered her I:C ratio from 1:26, to 1:24 (the difference in her bolus was .20 units).  And the last two days she hasn't gone over 160 before she crashes.  WHHHHYYYY? 

Mentally, it's exhausting.  It's like an enigma, wrapped in a paradox, stuck inside a conundrum.

Or something.

I don't really have any sage advice on how to deal.  My method is to rant and rage (to my husband, a friend, my blog, or an empty room), and remember all that I'm thankful for; especially that my daughter is here in my arms. It could be so much worse.

And then I go to Target.  Because Target is good for all that ails you.

Monday, May 16, 2016

Of Applesauce and Advocacy

Message Monday - Monday 5/16

Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog?

It happened the other day in the applesauce aisle of the grocery store... as all good advocacy stories do.  I was delighting in all the clearance deals on my son's favourite apple sauce. She seemed to be overwhelmed by the sheer number of flavours available.  We made some small talk about applesauce when she dropped this bit of deliciousness in my lap:

"My son told me not to buy him apple sauce because he doesn't want to get diabetes."

Um... What?

She was quick to add, "I mean, it runs in my family.  I have it.  Type 2, that is."

I told her about Elise, and as we spoke some more, I showed her how I can see Elise's BG on my watch.  It was 71.

"Kind of low," she commented.  I let her know I was in contact with the nurse and the low had been treated.

"Couldn't she, you know... stop the low before it happens?  Maybe eat a handful of nuts. Or eat a snack every two hours?"

These were honest, genuine questions.  From a person who seemed eager to dispense some (what she thought was) helpful advice.

I told her that type 1 was different, and that my daughter would have to be psychic to ward off lows.  Sometimes they come out of nowhere.  We can do the same thing day after day, and get different results. And that everything (EVERYTHING) can affect her blood sugar, right down to the colour shorts she's wearing that day.  

Kidding... I think.

The woman then commented she didn't know type 1 was so involved and thanked me for the information.

And I guess that is why I still blog.

In the beginning there was an amazing group of mom and a few dads that were part of the blogosphere.  And a lot of it was about support, and community, and same-same.  I craved it and needed it at the start.

But as we continued our journey and the number of D-'rents blogging fell off, it became less about community, and more about sharing our story.  Hoping that friends would read it, and understand more about our life.  Wanting strangers to read it and know that they're going to be okay. 

I feel like I have a tale to tell, and if it helps just one person, then that's all I need.