Friday, May 4, 2012

Atypical ranting soapbox mama

I'm in a mood.  I'm wagging my finger and double air snapping all over the place.
Oh look!  A soapbox!  Looks inviting... 
Listen up!

It is real.

Diabetes is not a joke.

People honestly think that fat people just need to eat less and diabetes will disappear.

Diabetes is not a fat person's disease.  It is an everyone disease.

Type 1, Type 2, Lada, Gestational, all of it...everyone is a target no matter what your waist size.

My boys have a type of diabetes called Type 1.  It thrives in the otherwise healthy population.  This particular type is autoimmune...it is serious...it is not a joke.

Diet won't make it go away.  Diet won't make them "better."
 
Their pancreases do not make insulin.  NO INSULIN.  Too bad every one's bodies need a constant stream of insulin to survive.  If insulin was only kinda important it wouldn't be a big deal.  But insulin is very important...so important that just a few hours without it is an emergency...a life threatening emergency.

But the world turns a blind eye and doesn't want to see what a serious thing it is. 
Story time.  TRUE story time.
 
Grab a blanket and some cocoa 'cause it's gonna get all kinds of real up in this blog...

Today I was picking up my boys from school.   My nephew attends my littles school and I was chatting with my sis.  We said goodbye and within minutes she doubled back to find me again.

"Meri!  Did you know L is laying down on the ground...in the middle of the playground?"

I ran over to him and found him face up laying flat on the ground. 

"What's up L?  Are you low?"

"No...I'm just so super tired.  My body doesn't want to work.  I just want to sleep."

"Are you sure you aren't low?"

"I am sure.  I checked my sugar before school was out and I was a little high.  I gave myself insulin"

We get the car and pick up his brothers at the Junior high and High School.  We run to the outlet mall...I need a baby shower present and L needs shoes.  Like...his shoes are 2 sizes too small...

But as we are walking into the mall L says he is going to throw up.

Blood sugar:  592.

I check his pump.  His reservoir is full of insulin.  I check his history.  Yes, he gave himself lunch insulin.
 
I have him bolus himself insulin to correct his sugar and send another child to the drink machine to buy L a bottle of water.

But my gut tells me something is wronger than it seems, so after the insulin is injected, I take off his set and prime out a unit of insulin...just to make sure it is working. 

I hold his set up to the sun so I can see more clearly...
Nothing is coming out.  
I try again.  A tiny speck appears. 

"What do you think J?"

"That isn't a unit." Says J.

Then I feel it.  Insulin on my hand.  The tubing cracked and L wasn't getting any insulin at all.  I look at B with my mouth agape.  B returns my stunned gaze and says, "dot dot dot."  Which is his way of saying  "..." which is his way of articulating an uncomfortable pause or heavy moment.  Probably a sign that he plays too much Mindcraft, but I digress...

L is about to lose it.  We run to the bathroom and he composes himself.

So then I order B to take his pump off and give it to L.  I give L the proper amount of insulin through the prime so it doesn't show up on B's IOB.  And I leave the pump on L...he needs the insulin more than B right now.  

What kind of choice is that?  Not cool fates.  Not cool.

So we get home and this is what I find.


And checking ketones takes a lot of extra blood...more than a normal blood sugar test.  And blood spurts all over me...

And my baby looks like this.


And so I throw on new tubing and a fresh reservoir with fresh insulin for good measure.


I insert the needle into my boy, and pull it out leaving the tubing inside.


I spend the next two hours monitoring ketones and blood sugars and finally realize...

Meri...you can breathe.  He is going to be okay.

But here is the kicker...

What if I didn't test his sugar?  What if I left him and figured he had the flu?  What if I didn't test him at all the rest of the day? 

I'll tell you what would have happened...He would have gone into a coma...or even worse.

Now I know you are all rolling your eyes and thinking:
"MERI!  That would never happen!  You are a rockin' pancreas.  You always are vigilant about checking your boys.  You would never ignore symptoms and not check him."

And you are right.  I never would.  But it happens around the world...ALL THE TIME.

Maybe a family can't afford the test strips.  They are a dollar a piece.  Some families can only afford to test their child one time a day...if at all.  Somefamilies can't even afford insulin for crying out loud!  And they have to CHOOSE to let their child die.

There are teens out there, adults even, that don't test for days.  Maybe they weren't educated about the importance of it.  Maybe they are just so darn sick of CONSTANTLY CHECKING ALL THE TIME.

There are people out there misdiagnosed as Type 2...when they really have Type 1.  I can't even properly relate how dangerous this is.  Most Type 2's can go without insulin...there isn't a Type 1 in the world that can go without it.  (Most type 2's make insulin...it is slow and sometimes insufficient...but it is present.)

It's serious. 

I'm pretty okay with that.  On hard days, like today, it is hard to be okay with it.  But for the most part I accept our story.  We can do this.

But so so many are misinformed.  Even by doctors.  Misinformation is just as much an epidemic as diabetes is.

And those on the outside looking in think it is a dietary issue.   That's just cruel.

Our life is REAL, and SERIOUS every day.
 
And lest you want to gag...I want you to know I am honestly not complaining...

I'm just seriously gobsmacked with the misrepresentation diabetes has in the media.

I'm getting off my soapbox now...and going to bed.

For a couple hours anyway...

Because at 2am I will be checking blood sugars and ketones again.  Because diabetes never sleeps and not checking is a gamble.

Sure, the odds are in their favor that they will wake up alive even if I don't check.  But I don't play the odds when it comes to my boys. 

I don't gamble with my children's lives.

Because as I said before...Diabetes is serious.

How can we get the world to see?

(Wow. How did this soapbox get into my bed?)

Lights out on my rant.

Good night.

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