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 is 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 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 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... 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.  Some families 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 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.


  1. You are spot on!!! I cannot even tell you the amount of times I or my children have been told that if they just ate better or lost some weight their diabetes would be "cured". I do the only thing I can in that situation: educate!

    (Can I borrow your soapbox?)

    The cost of taking care of diabetes in America has become out of control. My brother, who is also Type-1, has in the past gone without insulin because he could not afford it. No one should have to do that.

    My kids and I are lucky enough to live in a country that recognizes that Type-1 diabetes is a chronic disease and that the families dealing with it need extra support. The government supplies everything that we need to control and treat diabetes, including all of our doctor visits. I don't know how we would have managed it if we were still living in America. Something really needs to be done!!

    (Thanks for the soapbox)

  2. Awesome rant Meri. How quickly diabetes becomes dangerous is the HARDEST thing for people to understand. My sweetie look so healthy, and she is. But something like this could easily happen to her and it requires constant vigilance. Thank you for stating it so eloquently.

  3. Rant away my friend. Your diabetes amy vary but one thing about diabetes that doesn't vary is the fact that it is a rat bastard. I applaud your skill and presence of mind to swap pumps and prime the units into L to keep them out of B IOB calculations. Spectacularly cool under pressure.

    Love Ya / Mean It


  4. we're a week away from my daughter's first anniversary w/this, this...i don't even know what to call it anymore! thankfully we've had no one tell us to eat better, lose weight, gain weight, but what i don't like any more is the people say they're sorry. i know that it's coming from the most genuine, well-meaning place, but it's just not necessary. nothing we could have done or do in the future will change it - it is what it is and this is what we do to go forward and not dwell. i thank you too for the soap box and i wish i was some times as accepting and positive as you are - i'm working on it on drop at a time!

  5. You are SPOT ON, Meri. Thank you for the rant! We all need to do more of it to get our voices heard. Hugs to you! P.S. I SO want to move to Ireland, Shannon! ;)

  6. Amen Sister. We were there too yesterday. 1.5 ketones and HIGH. Sucks eggs. What else can I say? Oh yeah- love you! ((hugs))

  7. Preach it! Preach it loud! (sucks eggs - concur)

  8. Oh Meri, I was one of those people who was misdiagnosed (at age 46) with Type almost killed me! Lucky for me I realize that the Endo I was seeing at the time knew nothing about LADA and only believed that Type 1 shows up in childhood! Unbelievable that he can still practice and be a "specialist" in Endocrinology!

    I'm so glad L is ok and that this is one of those "bumps" in the road. God bless!

  9. Thanks for posting this! I AM one of those overweight type 1 diabetics, and I hate it when people act like if I just lost some weight I would be cured! Grrrrr..... You are so awesome. I am always inspired by your strength! ((((HUGS))))

  10. Meri, you don't need to climb down off your soapbox. Ever. You're doing everything right, saying everything right, and writing everything right. And the "thanks" that you get for being such an awesome Type Awesome, to borrow a phrase, sucks eggs. You have every right to preach the words you have to say.

  11. Holy crap, Meri. That is sooo scary. You definitely should be on that soapbox. Its important. I've learned a ton from you since I've known you that I've had no clue about before. I can't believe you didn't tell us any of that last night!!

  12. I am so sorry you had a day like that with all the other stuff you are going through. I have had similar days with my son from time to time. Your kids are so blessed they have such a smart mom sitting on ready to go and conquer at all times. I have often wondered if someone like Bill Gates had someone he loves (not that I want to wish diabetes on anyone) to get diabetes, would he have enough money to throw at the research to cure diabetes that we could all get rid of it.

  13. Have you ever had that moment of DOH! over what seems the most obvious stuff (esp. after someone brilliant showed you the way)? I would have dug out a syringe, pulled the reservoir and given the shot before it even dawned on me that I could unplug one kid and just plug into the other. Eesh.
    (I just had a flash of an old time phone switchboard with the big wall of connections and the wires “How may I help you?”, “I need a correction.”, “Please hold and I will connect you”, plugin, “Thank you.”)
    Hope L recovered quickly!

    1. Unfortunately, we've had to do this many times before. One thing I want to add though...we have to be sure not to use the other child's pump settings to give insulin to the other child. Once I put J's pump on L and almost bolused him 20 carbs with J's setting. (That would have given him twice the insulin he should have gotten.) That would have been a disaster! Another thing to note is the basals are completely different so we can't usually just leave one child's pump on another child. (Although in my case, L's and B's basal settings are pretty dang close!

      Thanks for the sweet comment!

  14. Sharing this as I am the one who only checks her sugar 1 a day for all those reasons... until I have a bad day or three. I have been type 2 for 15 years now transitioning from gestational into type 2 in 1995. My son has been affected by my diabetes and his twin sister died because of complications during my pregnancy. I too thought, just lose the weight and my body will respond to the insulin, but I am now realizing that my pancreas is just unpredictable and my blood sugar is unstable. Diet management helps, but any illness, stress, or even changes in the weather can affect my diabetes. If it affects my energy, it affects my metabolism. Thank you for accepting your life with the path you are on and trusting God throughout. It is a BIG testimony that God is giving you wisdom, peace, and strength to walk this path. May HE cure you all on this side of Glory!!! Just because.... because your words are so encouraging to people like me. Thanks for being a light in the world of diabetes!

  15. Meri...had a similar occurence with my daughter last... she was complaining of a headache and not feeling good.. I thought she was trying to get out of her shower, nighttime duties... but she was 500+... it is so serious and so constant.... people just don't realize how much work it is to manage and maintain!! Well said as always!!!!!!

  16. After having an entire DAY of fighting high blood sugars that made me physically ill (enough that I almost considered leaving work early...but I toughed it out), I understand this rant. Diabetes, from the outside, may not look like a big deal. But it is. And I am blessed that there are people out there TALKING about it.
    Thanks for your rant Meri. Perfectly stated.

  17. meri, I love your blogs .. . I love your posts . . . I'll say it again, you make me feel sooooo normal!:) I too am so glad you had the presence of mind to disconnect one to reconnect another! Wow! True grace under pressure! You are my diabetes hero! You fight each minute for your boys just like I fight each minute for my girl. Keep those great words coming . . .and if you'd like to use the soapbox, I'm all for that!:)

  18. Well said. That is some scary stuff. I try to make diabetes look easy, but it's not. It's constant, it's unpredictable, it's serious, and it can be downright scary sometimes. You are pretty awesome Meri. I appreciate you!

  19. I am standing right up there with you!! As Moms of Type 1's we advocate for our children and our children will in turn advocate for themselves.

  20. Meri, My husband has Type 1 and the pump. It is team effort- after 27 years of being a diabetic, he can no longer sense lows or highs. It is a daily struggle that my friends don't get. Any one single mistake can be the last mistake. Thank you for writing about it, for some of us, we get "it". Be strong...

  21. I completely understand. I am frustrated with how diabetes is portrayed in the media too. When people learn that I use a pump, their first reaction is, "Wow. you must have a really bad case." GRRRR.
    Awesome post!


  23. Some people just have NO ClUE!!Very True Diabetes never sleeps!! NO breaks:(


Moderation now enabled, so comments will not immediately be seen.