Diabetes: A Day in a Kids Life

I found this in a pile of Chloe's old drawings. It's nice to know she can capture a peaceful looking scene from the day in the life of diabetes. Just a happy mom gently sticking her smiling kid with a needle. Who says were not normal?

Insulin Pump; The Little Black Box

In the unfortunate event a plane goes down and you want to know why things went wrong, you simply look for the little black box.  I've never seen one but I know somehow, whatevers inside, it will tell the black box people exactly what they need to know.

Unfortunately for my kids, whenever they crash, I too can find out just how things went wrong because they've got a little black box on board themselves.  Only their black boxes are actually pink and blue and we call them pumps.

At the scene of any diabetic catastrophe, we just examine their pump and find out what cause the crash...or the soaring, whichever the case may be.

Unfortunately, what is usually tells us, is that we weren't paying enough attention to our controls-carb counting, timely testing, or pump updating.  The result is almost always pilot error, which in most cases, would be me...again.  Mother-of-diabetic-who-got-distracted.  Heavy sigh.

"Are You High?" And Other Lame Things We've Said in Public

All families have something unique about them.  Sometimes it's something small and hardly noticeable. Other times it's the everyone-knows-you're-odd kind of thing and it just can't be hid.  And after a while, whatever your family's particular uniqueness seems to be, it somehow slowly becomes quite normal to you and you forget that you've got something peculiar about you when you're in public.  In our family's case we're the weird family that doesn't eat a lot of sugar and has "di-uh-be-tis".  Everyone knows this about us, but we often forget.

Because of we've forgotten, we tend to say things in public which alarm the masses.  We get quizzical looks from people who are trying to understand what they're hearing.  We just go about our day making comments without realizing they might sound a little bizarre.

Here's a few things you might overhear us say to our kids if you happen to stand within ear shot of our family:

"Get a test."  This classic statement spews out many many times a day.  We think nothing of it until people give us an odd look and sometimes ask us just what kind of test we're about to give our kids.  Math? Spelling?  College entrance exam??  They're all wondering what kind of parent gives their children a pop quiz at the drop of a hat.

"Are you thirsty?"  This really isn't an odd question but when we pose it, it sounds unusual because of the negative suspicious tone in which we ask it.  This makes people wonder if we've punished our kids with some sort of diabolical water rationing system, which only heaps more public concern in our direction.


"Did you bolus?"  I'm not sure what they think when they overhear this one.  Perhaps they think it is code for passing gas in public.  Whatever they're thinking, it comes accompanied with a mild scorn and a quick veer in the opposite direction.  All they know is they don't want anything to do with a bolus, especially if it stinks.


"Where's your kit?" This always results in a confused look.  People's faces betray that 'what kit?' sort of look that gets their foreheads all scrunched up.  First aid kit?  Sewing kit?  Whatever-kinda-kit-are-you-looking-for? discombobulated look.  What we mean is "Testing Kit".  Honestly, I couldn't really tell you just when or exactly why we ended up calling our kid's meters & case  "The Kit", it just somehow happened.  It makes sense to us but we can tell it confuses everyone else.

But the question that gets most people really really shaking their heads...


"Are you high?"  This one is the mother of all misinterpretations.  Unfortunately it took us a really long time before we figured out it could mean something quite different to the non-diabetic ear, but it made complete sense to us.  While WE were talking about blood sugars everyone else was thinking substance abuse!  It never crossed our minds to ask this question in hushed tones as if something was really bad about it.  We forget that innocent bystanders who happen to overhear our conversations are alarmed because they assume we're derelict parents who have an inappropriately casual attitude with which we talk about what they think is drug usage.  What's worse, folks really seem alarmed when we ask our ten year old daughter this question, and slightly less offended when we ask our seventeen year old son.  Craziness indeed.

Talking quietly is not an option.  We're just not that kind of subdued family-even though at times I wish we were.   So we put up with the occasional odd looks we get from eavesdroppers.  It just reminds us that we are indeed a weird family, which, I suppose,  makes us just like everyone else...unique.

Diabetic Landmines

When Cheyenne was really little, we used to put those teeny band-aids on her fingers after she tested.  Not really to stop the blood-there really wasn't a lot of it left after the copious amounts of blood the old test strips used to require (enough to donate to a blood bank if you ask me).  We put the bandage on her fingers because, as any parent knows, there's some sort of magic power in a band-aid that makes a kid forget all about their troubles.  I'd buy them by the carton because we'd use so many.   BUT...the downside to easing Cheyenne's woes meant increasing mine.  These darn band-aids would stay on her finger for about an hour and then she'd shed them off all over the house.  To my major distress I would find them everywhere: stuck to the furniture, carpets, cushions, and sometimes hitching an unauthorized ride on my clothes.  It drove me crazy!  But it made her feel better so I just suffered through the whole ordeal by imagining the day she'd be older and these little landmines would be a distant memory.

Fast forward 15 years and things haven't changed much.  Though I'm not finding band-aids everywhere--that's changed.  Nowadays the two diabetics left at home leave me tiny test strips almost everywhere!  And while they are much easier to suck up into oblivion with a vacuum, they still drive me crazy!  Everywhere I go, these buggers are there vexing me at every turn.

Oh won't the madness go away??

But then I realize something.  When I finally get my wish, when these terrible tokens finally disappear from my house, like the band-aids have and Cheyenne with them, then it would only mean the other kids will be gone too.

So now when I start to tire of the test strip landmines all over the place, I realize it's not so bad after all.  So for now, I continue to do all my mine-sweeping with my vacuum...and a better attitude!

The "Mashed Potato Phenomenon"

If you've got a diabetic around then you've most likely heard of the  
"Pizza Phenomenon".  That unexplainable blood sugar rise that happens after carefully counting every single ingredient in a slice of pizza and correctly bolus-ing for it...only to find that a half hour after eating the pizza, your blood sugar is high despite double and triple checking your math.  Yes, that my friends is why Pizza earned the word "Phenomenon" to be it's dreaded companion like a hiss and a byword.

Around our house there's a few more things that have earned the prestigious "P" after its name as well.  An unfortunately they are favorites for both Mitchell and Chloe-though, to their dismay, I serve them very rarely.

First is the "Spaghetti Phenomenon", a serious blood sugar spiker there.  Mitchell in particular, loves spaghetti and will eat two monstrous plates full along with an unauthorized helping-or should I say heaping-of garlic bread (did I mention there's a "Garlic Bread Phenomenon" too?).  Spaghetti night doesn't happen too often around here just for that reason.

It then goes without explanation that we also have a "Lasagna Phenomenon" around here too.

Then there's the "Pancake and Waffle Phenomenon" which happens despite using the sugar-free syrup, a  "Corn-on-the-Cob Phenomenon", and a "Muffin Phenomenon" as well.


But the worst of them all is the evil and highly dreaded "Mashed Potato Phenomenon", which takes two full days of blood sugar checks to recover from. 

This is why, at our house, you will seldom see these things on the menu.  I avoid them like the plague because I am convinced it takes longer to get these foods out of their system than it would an actual plague.  I have lovingly termed the whole lot of these foods "White Death" since most of them come in the color WHITE and give me nothing but grief and ketoacidosis.

And now, for the bonus round...
Can you guess what was recently on Chloe's birthday dinner menu??

Spaghetti, Mashed Potatoes, and Corn!

I'm calling that, "The Birthday Phenomenon"!

Good Advise, Bad Information

Did you know, 

that according to the American Diabetes Association,  

Type 1 Diabetes only accounts for 5-10% of all diabetics?

 * * *

This means I've run into an awful lot of confusion...

Which, unfortunately means I can't tell you how often well intended people give me advice that makes me want to gouge their eyes out.  Yes it sounds a little drastic I know,  but it continues to be the one thing that makes me see red INSTANTLY.

Here's how the conversation usually goes...

Casual Acquaintance:  "Hey I was reading the other day about diabetes and did you know that you can totally reverse diabetes with exercise and diet?"

Me:   about to say something back but can't get a word in... 

Casual Acquaintance:  "Have you ever thought about changing your diet?"

Me:  "Well, that's interesting.  You must be talking about type 2 diabetes which is a different thing completely."

Casual Acquaintance: "Oh no, you should really try it.  Your kids wouldn't have to take insulin anymore and they would feel so much better."

Me:    Speechless. Trying not to let my blood pressure go through the roof.

Casual Acquaintance:  "I can let you borrow some cookbooks if you'd like."

Me:  Completely frazzled.  "No thanks, I'd rather eat crap and let my kids suffer.  But I appreciate your advise.  Really I'm just too lazy to try anything like that."

Casual Acquaintance:  Speechless. Watching me walk away.

In this conversation you can also substitute feeding them better food with taking some herb I've never heard of or a variety of other fantastical ideas.

I swear this sort of well intended conversation would happen on a weekly basis when most of my kids were in grade school.  At first it would leave me in tears.  The advise giver was so sure I knew absolutely nothing about my child's perilous condition and insisted I just needed to be given better information.  I could understand their mistake had any of my kids been overweight but they were all really skinny.  Never did I encounter a person who listened long enough to realize there really were two very different types of diabetes out there.

My first plan of attack was to educate people in a kind way that they were mistaken.  But when well meaning folks wouldn't listen I would end up in tears.  Did they really think I was doing this to my kids on purpose?  Then when I realized no one wanted to hear that my kids actually had an incurable disease,  I soon resigned myself to quickly end the conversation before it got anywhere.  Years later I just decided to frustrate them back by acting as if I didn't care if things could be changed.  Silly I know.  But after 15 years you get worn down and stop playing nice.

But, I've got to change my ways.

My solution is to force the disease namers to change the official name of Type 2 Diabetes to something completely different.  This would avoid the nasty mix-up that used to get me so riled up.  So I've thought of a few possible names:

• PDD- Pancreas Deficit Disorder
• Hypo-Pancreatic-Something-er-other

But my favorite one is...

• Pa-Cranky- that's for a cranky pancreas that isn't up to speed.

That should help right?  Different name means different disease, and that means different cures right?  Which should mean people will stop telling me to feed my kids better or to try some bizarre herbal concoction, right?

Then again, who's really gonna let me change the name? 

Then I realize the poor folks dealing with Type 2 have their challenges as well.  So that leaves me with about the only thing I CAN change:  my attitude.  And any advise on that, well, I'd certainly listen to.

A1c It's Just Not for Me

It's A1c time again.  I've already got a headache thinking about it.  Because I know this time around the numbers won't be too good.  The last three months have included Christmas, New Years, and all kinds of events that have distracted me from playing Nurse Nelly the way I should.  This diabetes stuff is a full-time job and quite frankly it doesn't always get the attention it needs/deserves.

The A1c always feels like a report card.  Like a test of my motherhoodship.  My ability to defy the gravity of bloodsugars, tests, and carb counting every few hours-all while trying to hold down the regular life that the outside world sees.  It's a very exposing look at the last three months of my parenting.  I often think it would be refreshing, though deviously selfish on my part, to require mother's everywhere to take a blood test every three months that could tell how exact they were during that quarter on doing their job just right; on laundry, housekeeping, helping their kids with homework, feeding their family nutritious meals, etc.  I'd call the test a Mom1c.  This test would provide me with lots of nervous and grumpy mother's to bond with.

Seriously, it gives me a headache. And a massive guilt complex.

But, what it ALSO does do is give me a shot in the arm (be it a painful one).  Like going to see your parole officer (I really don't have one of those), it's the kind of sober meeting where you come away feeling like you can do better than you have been.  You can re-prioritize your life and give the most important things the attention it deserves.  You plan new tactics so that you won't get distracted.  And, for a blissful month (hopefully two) I really will do better. 

With that in mind...I'm off to see the doctor with two kids in tow.

POSTNOTE:

Just got back from visiting with the kid's endocrinologist and things went better and worse than expected.  One had a good A1c and the other?  Well...not so good.  Thankfully we have a very understanding doc who knows that teenagers don't always manage their diabetes with lifelong optimum health in mind.  I have found that it has always been easier managing diabetes in a child who's still dependent on their parents and not so easy as they get older and more independent.   But he gave some very very valuable advise: "Don't Give Up."  A timely token for a weary parent.  And so, we plan to keep our chins up and keep trying!