Friday, April 24, 2015

What's the Big Deal?

Many, if not most, people don't realize the gravity of Type 1 Diabetes.  In that vain, we've heard things like:

Q:  What's the big deal?  I know someone with diabetes and their fine.

A:  Yes, most individuals with T1D live very full lives filled with joy and potential.  There's not much a kiddo with this disease can't do that any other child can do.  However, if you aren't living and breathing the 'behind the scenes' stuff we go through day in/day out, you probably won't realize they aren't 'fine' all the time.  Our little girls now have to begin to 'feel' when they are low or high -- it's a life saving tactic they need to develop.  Can you imagine, sitting at a desk next to your little girl who's been working happily on her schoolwork.  You look over after spending a little time working with one of your other children to discover she has tears streaming down her face.  She can't tell you why. She's. Just. Crying.  This disease has cost her the ability to control her very emotions. Severe lows and highs can even render her unable to think rationally. You suspect low blood sugar.  Guess what?  You now have to CONFIRM your suspicion with yet another finger stick.  Sure enough.  Low.  You give her a small juice. Then you wait. Will it bring the blood sugar up?  Will you need to give more glucose?  Finally, the blood sugar is on the rise.  All is well, right?  No, that 'yucky feeling' she's been battling while her sugar was low- that caused her to cry - doesn't just magically 'go away' when her blood sugar gets back in 'normal ranges'.  Now - you wait; you watch; until her body recovers; her mind clears; and she's capable of going back to her school work.   How long?  15, 30, 60 minutes?  It varies by child.  It varies by situation.  They are the only ones who can KNOW when they feel 'back to normal' again.  So, yes, they may be 'fine' some of the time, but.... often.... they may not be.  It's undefinable. They SEEM healthy, happy, thriving even, yet.... there's this deep, deep, loss and grief that isn't visible on the outside.

Q: or Comment:  At least you already know what to do since Techno is a T1D and you have been doing this with Selah for a while.

A:  100% true!  We DO know WHAT to do.  Techno has been carb counting and figuring insulin ratios for some time.  Me?  Not so much.  Can and has he taught me?  You bet. But... do you know how overwhelming it is to actually figure out the carbs in everything you put in your mouth?  It's exhausting.

What once took me 5 minutes when it came to preparing breakfast, now takes 20 -- and that doesn't count any cooking or plating of food time.  That's just checking blood sugars, calculating carbs for what they are going to eat, keeping their 'kits' separate, remembering whose numbers were whose, logging the blood sugar numbers/the carb ratios/the foods to be eaten, who needs what amount of insulin, then NOT mixing them up when administering.  The first few days after diagnosis, I cried when preparing meals.

Plus there's the 'art' of managing diabetes.  Once you take a blood sugar level you have to decide, "Is it low enough to wait to give insulin?  Do I give it before they eat, right as they start to eat, or maybe a little after they start to eat?"  Or "Do I give a little more insulin b/c I know she really likes Doritos and will probably want more?"  Then there's the dilemma when you've dosed for a certain amount of carbs and.... imagine it.... the 6 yo decides she doesn't like spaghetti today and barely touches her food.  Or worse, begins throwing up.  WHAT?  Wait?  I just dosed you for a million carbs and you ate 5?  Panic ensues.  That life saving insulin I just gave her to keep her healthy, to allow her body to utilize the glucose in her food is now life THREATENING.  There's not enough glucose going into her little body to be used by all that insulin and the blood sugar is sure. to. plummet.  What a nightmare.  So, yes, we 'know what to do', but it's not that simple.

So many variables.

So much to consider.

Multiplied by 2.

Each day.

Each meal.

What was lost?

That feeling of being 'fine' most of the time.  Of not having control of your emotions, even your thought processes when blood sugars drop or rise outside of 'normal' ranges.

Loss of time spent recovering from lows and  highs as the body readjusts to the blood sugar getting back on track.

Loss of ease when cooking and preparing meals not to mention the added stress of constantly thinking of the foods our girls might eat, actually eat, or don't eat.

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