He Should Do That, He Can Eat That, And His Diabetes May Vary

Daily, I am reminded we each, each and everyone of us, have our "thing".  I believe most of us want others to understand, or attempt to understand, our "thing".  

I want more understanding and acceptance for Joe and all persons with t1d.  The daily care, attention, and psycho-social-emotional toll the disease demands can be overwhelming.  To an outsider we can look like we are micromanaging things and making a bigger deal out of things than there needs to be.  Many people do not realize the attention to detail that must occur, in order for things to run smoothly and safely for Joe throughout his days...and his nights.  Misinformation and misunderstanding and subsequently the judgment of persons dealing with this high maintenance chronic condition can be frustrating.  

The following conversation took place a few weeks ago.

"Hi, is this Joe's mother?"

An apprehensive "yes", was answered.

"This is Mrs. (blank), his (blank) teacher."  

*Silence.  He's never liked the subject matter this teacher teaches.  I entered the conversation with trepidation.

"I wanted to learn more about his type 1 diabetes."

"Ohhkay.  What would you like to know about?"

"Well, it seems like he is doing a lot of 'stuff' for his diabetes during my class."

Joe had just experienced a couple of weeks of low-ish numbers.  So, this did not surprise me.

"What time of day is he in your class?"

"At the end of the day."

"Oh well that makes sense.  He has been running a bit low and he most likely is looking at his number and taking sugar.  After school he either walks a couple of miles home or he has hockey practice.  He typically would need to eat a snack for hockey and he might take some sugar tablets prior to walking home... what have you seen him doing?"

"Yes..he is taking some tablets and I have seen him eat.  ..... I also overheard him...and I didn't want to call him out in front of his friends...but he was telling his friends how he drank a chocolate milk, some orange juice, and he ate some Cheerios.  I know that probably isn't good for his diabetes and thought you should maybe know."

*This is where I take a deep breath and remind myself that I am thankful this teacher called me and wanted to learn more*

"It's totally fine if he eats those things.  He would need to give himself insulin for them to cover the carbohydrates.  Sometimes, he uses those foods to boost up his blood glucose or to treat a low."

"Well, it's just..that....  I have some friends who have diabetes....  It seems like Joe is doing more work ...with his diabetes... than they do."

*This is where I again, take a deep breath and remind myself of my gratefulness for her phone call*

"I think your friends  may be a little bit older than Joe (like by 50 years) and they may not have the same type of diabetes, and they are most likely not as active, and they may not be trying to keep their blood sugar in the range that Joe is trying to keep his in.  Each person's diabetes can vary quite a bit."


Teaching teacher about our day-in-the-life.

Some Ding Dang Blunt Honesty

What he was expressing isn't emoted often. It's rare for him to complain about t1d.  He truly just goes about his day-in-the-life of teenager-hood like a teenager-y boy in a teenager-ish manner.

Being a Teenager

About a week, or so, ago...

Perhaps it was because he does most of his care now.  Maybe it coulda been because he was being a typical 14 year old boy.  And it most definitely could have been because I scheduled his annual lab draw, a flu shot, his Endocrine appointment, and a 504 meeting all on the same day.  I forget - it's alot....type 1, it's management, and the crap that accompanies it.

He was slumped over and apparently taking a "nap" during our 10 minute drive to his Endo appointment.

I was definitely resembling a chatty, perky, 40-something-year-old, mom-type as I rattled off questions with a brisk tongue; trying to engage in some sort of meaningful conversation with my boy.

He hardly responded to me, as in I mean there were moans, groans, and single syllable words used.  I think I was  annoying him.

'Joe aren't you happy you get today off of school?'

A ..'For sucky reasons' was mumbled.

'It's not so bad.' An attempt to encourage him to be more positive was made.

Joe then sat up straight and and then set me straight.  'I get to go get my blood drawn, get a flu shot and see a doctor about a disease that I don't want....I then get to go sit in a conference room ... with a bunch of my teachers ... and discuss the disease that I don't want.  It's the worst.'

'I can think of worse things.' I then mentioned something about death, death of loved ones, and maybe squeaked in the death of his beloved dogs all being way worse than his day with the disease that he doesn't want.

His response...'it's the worst that I've experienced in my life, so far.'

Good point.  I wish I'd keep my mouth shut sometimes.  As we chiseled our way through the diabetes "to do" list, his attitude improved. His A1C - 6.9.  He had some insight into his 504 Plan and discussed it with his team.  He was back to "the Joe" I typically see.

Blunt honesty about his day-in-the-life.

Eye Protection

How Joe makes bacon snacks. 😎

A day-in-the-life of carb-free snacking.

They Don't Train You About This Stuff

#theydonottrainyouforthisatdiagnosis
#nightchecksdothematyourownrisk

There was no time for a thought to flicker in my thought feed, as I dropped to the floor like a 140 pound sack of potatoes.

Last week...

It was 2-ish a.m.  I had just checked Joe's blood sugar and turned off his bedside lamp and was traversing my way around and through what looked like laundry fields, hills, and mountains.  The laundry - some piles clean, some dirty, and some were possibly unknown (clean or dirty or both) is a typical scene in Joe's room these days.  He does his own laundry.  I think he has a system?

Back to me...

I was maneuvering myself through the laundry landscape and came upon a crumpled up large blanket.  I decided to walk on the blanket pile.  The pile was large; it looked soft; it looked safe.  One step onto the blanket and my right toes hooked into a metal laundry basket catapulting it up on end to impact my right shin, tripping me.   The laundry basket then falls to the ground in time for the top metal edge to absorb the impact of my anterior thigh.

Do not underestimate the impact of our day-in-the-life.

Confidence in the Desired Outcome

The title...I think that means "hope".

Where has the time gone?  He is starting high school in the fall.  He's been living with, living well with t1d for like 11 years now.  I've been typing away on this blog on and off over the course of  7 years.

Graduation from Middle School

Woodchuck (I think normal people call it a "diabetes bag") has evolved from a camouflage-murse to a gray kinda-like messenger bag to a  royal blue Nike string-strapped backpack.  This new bag, well...it's not as convenient for me to assess supply needs, as everything is just jumbled up on the bottom.  Joe prefers it though.  It looks like what many of his friends carry.

NIKE Woodchuck

He wears a medical ID now; dog tags.  It's a must as he traverses the community without me present. I expressed the importance of having some sort of identification on him...you know, in case.  It's hard to phrase things like you might need help if you go so low that you can't talk...a.k.a. you are unconscious or maybe having a seizure...So I just kinda mumble through those moments.  He knows.  He knows he may need help at some point.  The ID is worn daily; no reminders needed.

Joe.  Joe seems pretty typical to me.  He is checking his blood sugar regularly.  He boluses for snacks and meals.  He doesn't appear uncomfortable with his diabetes-ness.  His CGM and POD are on his arms.  They are visible often.  He performs his care in front of his peers.  This is where I think an early diagnosis maybe has helped us; helped Joe.  He knows no different.  Having "something" has been his norm.

Me.  I go from this elated feeling of 'WOW...he's a teenager and he's still doing pretty well with the daily grind of managing t1d.'  My life has gone from micro-managing blood glucose levels, carb counting, bolusing, pump-site inserting, CGM inserting, blood sugar boosting 24/7 x 365.  Now, I assist with CGM insertions only.  Joe does the rest.  Occasionally, I check in on his self care with a "what's your number?" or a "did you bolus?".  I am pleasantly surprised by his response to a "how many carbs are you counting that as?" and his reply is within 5 grams of my calculation.  There is a huge relief in all of this.  He can participate in sports, solo, with minor d'-sasters here and there; these are learning experiences.  Each season he becomes better and better at handling the rigors of t1d and activity.  I say all of these things and then it sneaks in; the fear.  Fear of nights, of driving, of college.  Eleven years ago, when he was 3, I couldn't imagine us here.  He is thriving.  This is what I hold onto as I look forward to the next several years.

A day-in-the-life of hope...confidence that Joe will grow up happy and healthy and live a long life.

The Exam Table

There was a time I had to lift him up to the exam table. 

His A1C was 7.1%.  

An 8:15 a.m. appointment, during his first week of summer vacation, was not a cool start to his day-in-the-life. 😀

...On A Stick

As he stumbled to the pantry  for a juice box, an  'I feel like a butt cheek on a stick' was heard.

'What's your number?'

'38'

A teenage boy's description of a low in the day-in-the-life.

Letting Go ... A Bit More

Sometimes I feel like this d' mom business is like being drug down a path, not of my choosing - mind you, by my 4th toenail; I claw and scratch and dig at the earth in resistance.  I worry.  Many times I feel alone with that worry, as it can be belittled by those who don't truly understand the nuances of t1d.

Yesterday...

Maybe it's because he hasn't really ran this far before.

Maybe it's because it's a crowded and chaotic event.

Maybe it's because we really have no experience with basal reduction and carb boosting with distance running.

Maybe it's the logistics of him running 5.3 miles out and then needing to take a shuttle, on his own, to get back to the finish line.  

Maybe it's because I'm running the whole marathon and I won't be able to get to him easily if he needs help.

My friend offered Joe a leg in the Vermont City Marathon.  It is taking place this Sunday.  I am registered to run the marathon and Bridget is going to do a half marathon.  It's a big event for Burlington, Vermont.  The news has been broadcasting updates on the weather and marathon details for over a week now.  Downtown Burlington is congested with thousands and thousands of people: runners, spectators, and volunteers. 

When my friend asked Joe about the leg, I was sitting in between her and Joe.  Joe perked up and confirmed he would like to run the leg.  I kinda did a grumbly-mumbly under my breath 'uhm...we aren't really prepared for him to run a leg.'

My friend: 'Oh don't worry my kids haven't done that distance either.'

Me: 'No...d...ddiabetes."

I felt bad for even saying that.  I don't think Joe heard me.  Yes, I have always tried to show him he can do anything despite having diabetes.  He has....but...I've always been there.  I've been there with sugar sources, back-up supplies, and a brain that can make split decisions about bolusing, boosting, and adjusting pump settings. This will be a 5 mile jog without his parents close by, but surrounded by thousands of people...and aid stations...and even medical stations...and there is even a race tracking app.  I guess it's as good of an event as any to let go a bit more.

Last night..

'OK..you can do it, but you need to have sugar with you, your phone with you...and you have to wear your medical ID.'

'I will Mom.'

The Game

5:18 am - no signal on his CGM.

I should check him.  If he is high, there is plenty of time to correct; a little over 5 hours.  I was careful not to wake him. He needs his sleep; especially today.  I lifted his ring finger and pressed the lancing device firm to his finger tip, hoping to avoid the need for multiple pokes to get a blood drop.  He was 386.  Not a great number.  I corrected and plodded out of his room and down the stairs.

Was the ringing tinnitus?  Or his POD?  I went to the bottom of the stairway and didn't hear anything, so assumed it was me and my aging ears.

5:38 am - Joe came down the stairs.  The ringing was his POD; it failed. The beeping from the POD woke him.  He's up.  It's game day.  It's State Championship game day.  I hate diabetes.

Joe changed his POD.  We bolused for the portion of the correction not given, due to the failure.  Joe ate; bolused for that too.

Around 8am - BG remained 386; a correction was given.  There was still 3 hours until game time.

9:30-ish am - BG 156. Two juice boxes (44grams CHO) were chugged in the car en route to the rink.

10:10 - BG 171.  Skittles (a fistful) was consumed.

10:50 - BG 263.  A good place to be for Joe to play the game.

All this work.  *sigh*

All this work...he endures daily.

He went down in the first eight minutes or so of the game.  His hip had been an issue the prior week.  It popped while he was skating and he went down.  The game was paused, while he removed himself from the ice.  He hobbled off the ice, off the bench, and into the locker room.  When I got to him...tears.  He was removing his pads; they were forcefully chucked into his bag.  Win or lose, more than anything else... he wanted to be playing with his team.  He watched the remainder of the game from the bench.  His team was the Runner Up for the State of VT; they lost the state championship 2-1.

I wish I didn't feel like this.  I wish I could just write that we've got this.  I wish I could say we are warriors and nothing gets us down.  Frankly, I'm disappointed for him.  And.  I feel a bit bitter.  He endures enough...just to get to the stupid game.  Sorry.

His blood sugar after the game, after all those carbs and then not skating...126.  Nice.

Kinda pissed off about the day-in-the-life.

I'm a Checker, but not a Mice Checker...Yo

A few days ago..

 

Pre-post note:  We are currently besieged by mice.  Traps are set in the basement and the main level of our home. 

The words "GI BUG" scare the BeJeezus outta even the most resilient, calm, cool, and collected of d' rents.  Joe currently has one.  I was up at 3 am ... checking a blood glucose, ketones, and then bolusing insulin.

As Dave woke, I updated him on the night care provided.

Me:  "I checked his BG...high 200s, ketones were OK...I've bolused twice over the last three hours."

Him:  "What about the mice?"

Me:  "What?"

A sick Joe with Oscar.  Miniature Schnauzers are supposed to be mousers! 

Him:  "Did you check the mice?" (referring to our traps)

Me:  "I'm the ketone checker; you're the mice checker."

Checking in on the day-in-the-life, but not on the mice. 😱

Maturi-D'

Over the years, I've tried to teach him the proper way to do things.  A healthy diet was discussed and modeled.  But... he did his own thing, choosing to eat from the "Brown and Beige Club" for years - chips, bread, mac and cheese, chips, crackers.  Now, lean meats and vegetables are consumed regularly.  Blood glucose checks were encouraged multiple times daily.  This has been his routine for the most part, but with some nagging.  Rotating pump sites, took years; like 9 to be exact.

The lumps and bumps are persistent in one arm; his right.  Until this last year, he used the backs of his arms exclusively for pump sites and CGM sites.  He was reluctant to try a new area.  Reluctant should be translated as "refused".  

Several months ago, Joe first found these lumps.  I explained it was most likely due to lack of site rotation - lipohypertrophy. I encouraged rotation, but didn't say much more.  A few weeks later...

 

A little more maturity in the day-in-the-life.

Growin' Up D'

Just like when you questioned their ability to one day pee and poo on the potty, to feed themselves using a utensil, or to tie a shoelace, a parent of a child with t1d questions the ability of their child to perform the tasks involved in managing t1d, independently.  The tasks are one thing.  They are fairly straight forward.  First do "this", then "this", and then "this".  This approach can be used to teach checking a blood glucose, carb counting, and delivering a bolus of insulin.  There is a whole other level to managing t1d; the critical thinking aspect.  If "this", then "this", but if "this", then think of "this" and then try "this", but do "this" if "this" is happening.  This is much more difficult and challenging to impart.

About a week ago...

In an early morning hour, I entered the kitchen.  The blood ketone monitor and a scrumpled strip wrapper was laying on the island.  When Dave woke, I asked him about it.  He didn't use it.  Eventually, Joe woke.  He explained it.  He decided to check ketones before going to bed the night before.  He had been in the 300's all day (due to a cold) and was in the 400's prior to going to bed.  He thought it would be a good idea.

When he was diagnosed at three, the thought of teaching him how to check a blood glucose seemed unattainable.  It happened...when he was four.

The thought of him learning to bolus was overwhelming.  Again, it happened...when he was five.

Carb counting seemed out of the question.  It, too, occurred ... I think it was when he was 7-ish or 8-ish.

Pump site changes... yup...he started those when he was 9.

The previously mentioned tasks are just that.  They are tasks.  They are the foundation of managing t1d.  The next level is where the critical thinking skills come in: managing activity,  managing illness, managing pump settings.  We are at this point now.  He's doing it.  

Independence and it's progression in the day-in-the-life.

Feelin' "Got"

I'm not sure if isolation quite describes it.  I suppose it is a feeling of loneliness and of feeling misunderstood.  Today, I didn't feel that way.  Today,  I felt "got".  Today, my eyes teared up as I read an email from one of Joe's teachers. This email was not in response to any recent issues.  It was an unexpected email of praise for Joe. 

A portion:

'I can only imagine how challenging it is to live each day with diabetes, and the impacts it has on Joe's personal and academic life. And, as if managing the health aspects of it isn't enough in itself, he also has to learn how to advocate for himself and build new coping skills to manage it's impact on all aspects of his life. I see so much growth in these areas as well.'  

The blood sugar checking, the carb counting, and the insulin dosing are one thing.  Sure, at times, the numbers cause physical discomfort.  Yes, the management, the needles hurt.  The thing about diabetes is... the actual disease and the management are so enmeshed and interconnected throughout our days and our nights that it is impacted by just about everything;  it impacts just about everything.

Proud of Joe and how he handles his day-in-the-life.

Chromebook Confiscation

NOTE: Joe does not have a Chromebook Confiscation history.

I knew, over the years, we'd run into difficulties of not being understood.  Sure.  We all deal with that in our day-in-the-life.  I guess I didn't think I'd be saying things like this to an educator:  'Not only is his access to his school day limited by treating and waiting out lows, but to take away his Chromebook for the remainder of the school day, because of his medical condition... limits his access further.'  My voice was measured.  My temper in check. 

The blood sugar checking, the carb counting, and the insulin dosing are one thing.  Sure, at times, the numbers cause physical discomfort.  Yes, the management, the needles hurt.  The thing about diabetes is... the actual disease and the management are so enmeshed and interconnected throughout our days and our nights that it is impacted by just about everything;  also, it impacts just about everything.    

About a month ago...

Joe experienced a school day riddled with lows; blood sugars hovered from the 50's to the 70's.  He spent some time in the Health Office, but for the most part he remained in the classroom.  At one point in his day, he left his Chromebook in a hallway.  He forgot it as he was dealing with another low.  The Chromebook was confiscated for the remainder of the school day.  It was confiscated because it was unattended.

At the end of the school day, Joe visited the Chromebook Confiscator and let him know he had a medical issue that caused the infraction leading to the "confiscation".  The Chromebook Confiscator made Joe promise it would not happen again.  Joe promised.  His Chromebook was given back to him.

Within a week's time...a week where lows were plaguing his days and nights...again, the Chromebook was confiscated by the Chromebook Confiscator.  Joe went to gym class.  He placed his binder and his Chromebook on a bench in the locker room; not in his locker like the students have been instructed to do.  You see, he was nervous about going low during gym.  The shakiness of his hands make maneuvering a combination lock challenging; making access to his belongings quite difficult.  Even if a low was treated, it could take 15 to 20 minutes for him to feel better, for the shakiness to subside.  Joe did end up low.  His Chromebook, gone from the locker room bench...taken away for the rest of the school day.

So, it is at this point... at Chromebook Confiscation #2 that I stepped in.  Joe needed an advocate.  He was missing class due to managing low blood sugars AND the only mechanism to access his work electronically, at school, was being taken away from him.  It was being taken away from him because of diabetes, none-the-less.  

I spoke with the Chromebook Confiscator.  I explained Joe's medical condition.  I explained how low blood sugars can impact executive functioning.  I explained when he feels low, he needs to treat the low promptly.  The Chromebook Confiscator's solution was when Joe feels low, he could walk his Chromebook to his locker and then treat the low.  Tears, while not yet visible, could be heard in my voice.  'You aren't understanding me.  He should not have extra steps added into his routine when he feels low.  He needs to treat the low...not walk to a locker...unlock a locker...and place his Chromebook in the locker.'  

So, then the Chromebook Confiscator proposed, Joe not even have a Chromebook.  He proposed a desktop be provided for Joe in each classroom he attends: Math, Social Studies, Spanish, English, Science...I explained firmly, this was not an option.  Not only was the proposal just plain wrong, but hey...let's make Joe feel even MORE different... he has a pump, a CGM, sees the nurse multiple times daily...oh and let's add ... there's the kid who has to use the desktop computer in FIVE different classrooms.  Awesome.  Ugh. The conversation left me feeling alone, misunderstood, and questioning myself.  Am I asking too much?  Am I over-complicating things?  It also left me feeling a bit sorry for Joe and for myself.  Why can't things just be easy?  This life, of managing t1d, is difficult enough.

In the end, Joe's School Nurse and the Principal met.  A sticker was placed on Joe's Chromebook that states something like "If found, return to the Nurse."  

The Chromebook Confiscator disrupting our day-in-the-life.

'

Night Shift

At least he piled up the juice boxes neatly.

The above is the scene that greeted me, as I went in to wake him a few weeks ago.

'Joe, the juices are not for snacking on.'

'I was low in the middle of the night.'

'Three times?!'

'Yes.'

Over the years, people have asked me ... 'When will Joe start taking care of his diabetes during the night?'  These people are well intentioned.  I've been pretty adamant that Joe sleep when he can.  Diabetes keeps him up enough.  He wakes, at times, when he is poked.  He wakes, at times, when I am cramming a juice straw into his mouth.  He wakes, at times, to the beeps from a pump failure.

He is a growing teenager.   His energies should be focused on school, sports, friends, video games....and other teenager-y things.  He needs his sleep for typical growth and development.  I have slept with the CGM by my bedside, nightly, for years.  It alarms, I wake, I take care of what needs taking care of.

On the three-juice-low-night, Dave checked Joe prior to bed ... and accidentally left the CGM in Joe's room.  While I found it reassuring that the alarm woke the sleeps-like-the-dead-Joe, I will still cover the night shift.  I know, one day ... soon enough, he will need to manage that, as well.  For now, it will continue to be me.

More on on our day-in-the-life of nights.

Choke It Down

A couple of weeks ago, after a hockey game, Joe bought an apple strudel-y muffin from the rink snack bar.  He was going to eat it on our 30 minute trip home.

'My number is 223...60 grams..I'm not going to correct, but will cover the muffin.'

A 5.5 unit bolus was then cranking into his subcutaneous tissue to cover this muffin ... which he hadn't yet tasted.  I chimed in with a 'I sure hope you like it.'

'If I don't, I can either cancel the bolus and drink a juice ... or ... I'll just have to choke it down.'

A day-in-the-life of knowing you may have to 'choke in down'.

School Nurse Call

At about 3pm, the end of the school day, a few days ago...  I received a call from Joe's school nurse.  She notified me of a recent low; he treated.  He left school without re-checking his blood glucose; he didn't want to miss his ride home.

'Ok...so your telling me to call him and make sure he makes it home alive (laughter) ... and if he doesn't, I won't hold you responsible.'  Laughter closed the conversation between Joe's school nurse and I.

These are the things you say, cuz they are kinda true.  He's meandering the community, alone...sometimes low.  At times, I just gotta have blind faith that he'll be alright.  He knows what to do.  I have taught him well. And.  I also realize..there could be times, he may not be ok.  There are no guarantees with anything in this life; certainly not with t1d.

I called him.

'You ok?'

'Yeah.  I'm 120s.  I didn't want to miss my ride..'

Conversations with the school nurse while dealing with the day-in-the-life.

Meatloaf

Joe cut this meatloaf-loaf into thirds this morning. 

Meatloaf pic added for comic relief.

His plan; take a 1/3 of the loaf to school for lunch each day over the next few days. 

We no longer use the "daily log".

We transitioned to a scrap of paper for carb counts; he says he doesn't need it, but it gives me some sense of security.

A less micro-managed day-in-the-life.

D'straction

It distracts him multiple times a day.  Prior to eating a blood glucose is checked, carbs are counted, insulin is dispensed.

It distracts him nightly, as he hopes to wake the next morning.

It distracts him when he needs to sip juice, as he sleeps.

It distracts him when he gets left behind because he needs to do a check, change a pump site, or consume sugar.

It distracts him when he wants to be active.  It must be taken into consideration every time he plans to exert himself physically.  It must be cared for, or his ability to participate could be hindered by a low.

It distracts him every few days, as he needs to load his pump, prep his skin, and pierce his body to place a new site.

Does he complain about this "distraction"?  Rarely.  Does he feel sorry for himself?  Never.

So, I guess it should not have surprised me; his reaction.

A few weeks ago, a couple of friends approached me.  Their children, classmates of Joe's, had said a teacher stated...in front of Joe and his peers...'Joe, your diabetes is a distraction to the class.'  This was during a period of incessant lows, a period of sleepless nights, a period of frequent pump adjustments...and a period of  'I just don't have it in me to be "that family" in dealing with the school system right now.'  I asked my friends to let the principal know about the event. 

I then discussed the issue with Joe.

He confirmed this indeed had happened.  He didn't give it much thought.  He was not bothered by it in the least.  His response....'the teacher is right...it is a distraction.'

Who would know any better the distractions this demanding, unrelenting disease causes on an hour-to-hour, day-to-day basis...than Joe?

Hoping ... just like for everything else that is "atypical" in our society...that respect, acceptance, and empathy are demonstrated for the day-in-the-life.