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.

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.

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.

The final lancet

"It's blue.  A darkish blue.  And it sort of looks like a pen.  Except thicker.  And there isn't a point on one end.  Just a flat surface with a hole.  It should have some white writing on it... I think.  Or maybe not.  It could have worn off by now."

I felt the words tumble out of my mouth, painting a very inadequate picture of what I was describing.

Then I lamely added, "It's what people with diabetes use to check their blood sugar."  Knowing full well that probably no help at all.

"Well Miss Joanne, if we find your item, I will be sure to give you a call straight away." Her sweet, southern drawl did nothing to make me feel better.

You see, as you probably know by now, I was describing a lancet.  And not just any lancet, a multiclix lancet, one of just a few left in our dwindling supply.

Elise has only ever used the multiclix.  When she was a tiny 12 month old, that was what we used to pierce her little fingers to draw blood.  It has been the one constant through our diabetes journey. And now we are down to one.

Others have been lost.  Some broken.  All of them irreplaceable because there are no more multiclix being made to replace it with.  And I know the fastclix, the younger sibling to the multiclix is just as good, but that does nothing to get rid of all the drums I have sitting in the diabetes cupboard.

That, and I don't do change well.

So for now, I might have to chain that last remaining multiclix to Elise's diabetes bag. Just like a bank with their pens.

Would that make me weird?

The Answer

It's the small things... I think the universe knew I needed a smile today.

P.S. An actual real live blog post(ish)!

Meanwhile, Somewhere in Texas*

Diabetes is being a jerk... even on the snow tube hill.

*picture may not actually have been taken in Texas 

Take back my blog Tuesday

I turn my back for a few minutes and my blog gets hijacked?  What a sweet post from my husband.  And if anyone else wants to say nice things about me, you can have my password too.


Well, now it's my turn.

I am a lucky girl when it comes to sharing this burden.  Far too many times I hear stories from wives about how they can't even go out for a fun night with their friends because their husbands haven't even tried to learn the basics of caring for their child with T1.  Or if they do get to leave, they end up being on the phone with said husband the entire time.

I'm not trying to throw the guys under the bus, but the majority of diabetes care usually falls to the wife.  In our case, it makes sense, because I stay at home. But however the duties are divvied up, each spouse should be capable of handling all things diabetes.

Fred does pretty much all the night checks.  My problem is if I get up, it takes me a good hour to fall back to sleep.  Sometimes longer.  So way back in the beginning, Fred told me he would take care of all the nocturnal stuff.

Best of all, I can go out and not even worry.  Can I just say how wonderful that is? Because I handle all the ordering of supplies, paying of bills, endo appointments, and changing of pump settings (along with dealing with whatever diabetes throws at me during the day), there are some days I feel like all I do is diabetes.  And my brain starts to hurt.

I need breaks (not just from diabetes, but from being a mom too) so I can maintain my sanity.  I am able to go play soccer,  take in a movie, have dinner with friends, go shopping. or even a weekend away, and I know Fred is on top of things.

So thank you Fred, for the kind words and for being a great Papa.  I couldn't do this without you.

Hijack Monday

It's been almost 3 years since I've hijacked my wife's blog...

In other words, it was overdue.

Hi, the name is ______, Fred ______ (Joanne doesn't like to give out too much personal info).

Just a quick shoutout to the best mom!

Joanne was a great mom before diagnosis and multiple kids and became an amazing mom once Elise was diagnosed.

Thanks for doing an amazing job and for everything you do for Elise!

That moment when...

... The carbs you just weighed for your daughter's afternoon snack almost exactly matches the amount you pre-bolused for (and totally guessed at, not even knowing what she would pick for her snack).

Go me.

Her Fight Song

"This is my fight song
Take back my life song
Prove I'm alright soooooooong!'

The lyrics blasted loud and strong from my backyard, not from the radio, but rather the lungs of my 8 year old baby girl.  She was flying high on the swing, her hair flying behind her, legs keeping time with the rhythm of the song.

"My powers turned on
Starting right now I'll be strong"

I moved to the window and silently watched her as she belted the words out for the whole neighbourhood to hear.  Tears started to well up in my eyes.

"I'll play my fight song"

Diabetes has not been nice to her lately.  We had a long fight with pneumonia, during which we battled super high numbers. She also got food poisoning a few days ago.  Her dex graph is so ugly I can barely look at it.  

And still she marches on.  Worn, but not beaten.  Tired of this life with type 1, but not ready to give up.  That day she seemed to be telling diabetes where to go and how to get there.

"And I don't really care if anyone else believes
'Cause I still got a lot of fight left in me"*

I believe it baby girl. I'd be a fool not to.

*Lyrics from Fight Song, written by Rachel Platten