Teenage Thoughts Interrupted

This is only a sample of what I imagine is circling through my daughter's mind, on repeat, every day:

when am I eating next
4x+y=47...where do I start
what's my blood sugar
when is that English essay due
we're running in gym today so I might be low
I wonder if Molly can come over after school
I'm sitting for an hour and a half in the assembly- I'll probably be high at lunch
I love the new Nick Jonas song
the school schedule changed for the day so lunch is really early- that'll mess up my blood sugar
should I get a new mirror in my room
should I have dinner before or after tennis so I don't go low
my piano recital is on Saturday
is it site change day
which dress should I wear for 8th grade graduation
why am I high
I need to get something for grandpa's birthday
should I ask all my friends to stop and wait for me while I check my blood sugar
why are my friends arguing over where to go for lunch on Friday
how many carbs are in this dish of Italian ice
are the Red Sox on tv tonight
should I correct again or will I crash because I might only be high from being nervous about the quiz
when are auditions for the summer musical
did I silence the dexcom or is it going to alarm during the concert
maybe I'll call my cousins tonight
why are there no clean measuring cups so I can measure my rice for dinner
that panda video is adorable
should I go to the nurse for this 69 blood sugar or just eat a couple of glucose tabs at my desk
should I ask for a new phone case
I need more dexcom tape
maybe we could shop for shoes for the 8th grade dance this afternoon
I have to bring more juice boxes into school tomorrow for the nurse's office
does the library have the book I'm waiting for yet
where did I leave the meter
is it my turn in words with friends with grandma
I have to remind mom that we need to reorder the pump supplies
should I post a selfie on Instagram today or is it too soon since the last one
maybe I'll just have cucumbers and hummus for snack so I don't have to count carbs
I'm so excited about this ancient Egypt history project
I can hear the alarm but where did I leave the dexcom
this box of tic tacs is almost gone

Whack-A-Mole

Streaks of high blood sugar are becoming frequent visitors.  I'm upping the insulin:carb ratio, the correction factor and the basal rates regularly.  My methods are sometimes scientific, with thoughtful basal testing and downloading of information. Some other changes have been made more impulsively, in exhausted frustration.  Either way, numbers seem to settle in for a few days to manageable if not perfect.  Then it's over.  She's stuck at 250 again.

So we start again.  Because of her health, of course.  And also because a 13 year old with consistently high blood sugar is not someone you want to live with. Trust me.

There was a time when we adjusted very few things between endo appointments.  One basal rate might change, or I'd need to up the breakfast carb ratio.  A little growing, or a change from school to summer schedule would require a bit of work, but not much.  Sometimes we'd do nothing at all and she'd be just fine. For 3 months.

I was warned this was coming.  I knew I'd have to start making regular changes in her insulin regimen.  I imagined it would be hard work.  What I didn't fully understand was the emotional component of the whole thing.  It's akin to playing a never-ending game of whack-a-mole.  There's that brief moment when all the little moles are in their holes and you take a deep breath hoping you've whacked them all.  Instead they start popping up faster than before.

I'm certain my little smile at the flat dexcom line from 1 a.m. until 7 this morning will be justly rewarded with an astronomical  spike before the day is out.  Or tomorrow's 1-7 line will be straight at 200 instead of 108. If we ever hit a day completely in range, I'm sure it will include a request from my child to go out to lunch with her friends to restaurant with uncountable carbs, or be followed by another lethargic snow day.

This challenge, like whack-a-mole, will take some skills to get through.  We'll keep looking at the big picture.  We'll keep moving.  We'll stay calm. We'll show the enemy who's boss.  And we'll know that this era, like any game of whack-a-mole, must eventually come to an end.  It can't last more than 4 more years, right?

Enough Already

Here's an abbreviated list of things I wish I never had to do again:

-Hear my alarm clock at 2 a.m.

-Receive a text that has only a blood sugar number in it.

-Answer a call from the nurse's office.

-Hear "I feel low."

-Do math before my first cup of coffee or in the midst of a party.

-Lug pounds of diabetes supplies through a museum or up a mountain.

-Worry whether my child is passed out somewhere.

-Explain type 1 diabetes.

-Argue with a pharmacist, insurance company representative or medical provider.

-Support my child through a disappointment or frustration diabetes has caused her. 

This parenting a child with diabetes job is intense and unrelenting. Being responsible for keeping another person alive,safe and healthy is a stressful job. It involves countless physical, mental and emotional tasks every day. I must also help with the math homework, do some laundry, make dinner and provide sufficient regular-people parenting support to a 13 year old.  In my spare time I should surely contribute to society in some productive way.  Then I need to get out to see the latest movies, read the big novels, exercise, and make time for the rest of my loved ones.

I've heard diabetes described as a juggling act among carbs, insulin, activity and multiple other factors, and it's a good  metaphor.  There are occasional days when this juggling act seems possible.

But then diabetes throws in a knife or a flaming torch and all those other balls must instantly lose my attention.

Relentless

We're going through a stretch of very active diabetes management here, and it's exhausting.

Don't get me wrong.  We're always managing diabetes; all day, every day.  It's just that sometimes it fades into the background a little bit.  This isn't one of those times.

At February's appointment we were surprised by a creep up in my daughter's A1C.  Nothing dramatic, mind you, but worth working on.

Suggestions to address this problem were discussed at our appointment, and we implemented them right away.  Then she started eating.  Everything.  She's growing noticeably taller by the week.  At every appointment lately, the endocrinologist has reminded us that her total daily dose of insulin is likely to double in the next couple of years.  At this rate it'll double by the time we see him again in May.

Her basal rates and insulin to carb ratios are going up and up. With these changes come increased finger sticks and dexcom alarms, the return of the log sheets, and an extraordinary amount of thinking.

I'm trying to meal plan and grocery shop more carefully too.  Countable carbs and balanced meals are important so that we know if the insulin changes we're making are right.  The fewer variables in that equation the better.  I'm also trying to fill her up, so that she's not looking for a snack an hour after dinner. If she does want a snack, I want to have healthy, filling choices on hand.

I'm hearing from the nurse's office at least once a day for a high or a low.  Then she's at play practice until five or six o'clock most days after school, so we're managing snacks and dance induced lows via text all afternoon. Meanwhile we're spending time figuring out how to include her diabetes equipment in her play costume. But who doesn't love a challenge?

The sedentary lifestyle of winter is giving way to the activity of spring.  Yesterday was the first outdoor recess since November. She's walking home again when she doesn't have play practice.  Schedule changes and field trips are creeping back into the school days.  So are juice boxes.

Factor in what feels like more than our fair share of diabetes flukes like the other night's 2 a.m. site change, and it feels like it's all diabetes, all the time here.

Which it is.

Walking. Again.

Below are excerpts from the letter I emailed and facebooked to our friends and family last week:

This year marks the 10th year our family has walked for JDRF.  Our first walk was in Boston, 11 months after she was diagnosed.  We walked 3 miles through Boston in the pouring rain carrying a 23 month old who refused to sit in her stroller.  Despite all of that, it was an incredible day.  People lined the banks of the Charles River as far as we could see in either direction. They were all there because they knew what we'd found out over the past year.  Living with diabetes is painful and challenging.  They were hopeful that the research supported by JDRF would improve the lives of people with diabetes. That hope was contagious, and started us on our journey towards supporting this organization.

I'll spare you the paragraph about the how crappy it is to live with diabetes, and the one about the kinds of research JDRF supports. If you're reading this, you have at least a rudimentary knowledge of both.

Ten years is a long time.  Some of you have been asked ten times now to join us and/or donate to our walk team.  Maybe you're tired of being asked.  We're certainly tired of asking. Yet we hope you've caught a little bit of our hope that JDRF is making progress, and that one day you'll be able to join us in saying that we made our hope for a cure a reality.

Writing the walk letter gets harder every year.  I truly am tired of asking people to give money to JDRF.  I'm tired of organizing the walk-day logistics.  I'm tired of how difficult it is for friends to participate because they're overloaded with fall sports, activities and competing charitable commitments. I'm tired of setting aside the day every year on our calendar.  Every September, I find it harder to begin again.

Then I remember that I'm tired of the aforementioned crappiness of living with diabetes. So another walk season commences.

Before I know it, nice things start to happen.  People donate generously. Someone who hasn't walked with us before is able to come. An encouraging note comes along with a donation.

I begin to realize again that I'm not alone.  While these people aren't in the trenches with me every day, they care.  Before I know it, I begin to feel a bit of that hope I artfully described in my letter. 

It feels good.