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.

Eye Protection

How Joe makes bacon snacks. 😎

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

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.

He Needed A Little "Back Up"

One of the main reasons I write is so others living with t1d feel a little less alone.  While my stories are short, little vignettes of sorts, I hope you get a glimpse of the victories and challenges we face.  Not all stories necessarily reflect us in a positive light.  This is real.  Diabetes has not only impacted Joe's life, or my life, or Dave's life...but it, at times, impacts Bridget's, as well.

A couple of hours ... ago..

I was reading.  I was reading upstairs in my room.  I think I maybe heard some kind of mumble-y call or muffled yell, but I thought it was Bridget and Joe talking about a show they were watching downstairs.  I did not pay the noise much attention.  How long it went on for?  I'm not sure.

Finally...

A very clear "Mom! Dad!  I need help."  And then something was yelled like "23".  My middle-aged brain then put it all together.  Joe is calling for help, he is low, and his number is 23.

As I came downstairs, the scene is set with a sprawled out on the couch Joe, who has a fist-full of Skittles held to his mouth.  He cannot eat them fast enough.  Bridget is curled up on the other couch, the scene is rank with sibling turbulence. Apparently Bridget told Joe to "be quiet", during his multiple calls for help.  This has Joe up in arms, but he was unable to expand on the situation, due the the low treatment of trying to chew and swallow like 20+ Skittles all in one mouthful; not an easy feat.

Once Joe swallowed the masticated Skittles, the sibling conflict continued.  He was quite upset Bridget told him to be quiet, when he was calling for some help; for some, as he put it - "backup".  I expressed some concern over her lack of reaction and compassion.  She left the room.

Joe was shaking.  Joe was hot.  I've never seen him have a low where he felt warm or hot.  The discomfort was motivating enough that he silently made his way to the freezer for peas.  He then sprawled back out on the couch and plopped the bag of frozen peas on his forehead.

I made sure he was OK.  I then went to seek out Bridget.  She was upset with me; with Joe.  She has lived with diabetes in the household for all these 9+ years along with Dave, Joe, and I.  She knows lows are dangerous.  She knows he needs sugar.  She explained her side of the scenario to me ... Joe had his sugar and he had called for help multiple times.  She could hear my footsteps as I was making my way down the stairs; she knew help was coming.  She did not see the need to "do" anything at that point in time.  She did feel it was time for him to keep quiet so she could focus on her show, Grey's Anatomy.  Keep in mind she's a high school student and athlete.  She goes to school full time and practices and performs 6 days/week; she does not get much down-time.  

Diabetes is difficult.  Not always.  Sometimes we are smooth sailing over here and I kinda forget we are dealing with it.  There are times, however, it's not easy for any of us... especially when we are just trying to enjoy a relaxing moment.  I get it Bridget.

Honesty about t1d in our day-in-the-life.

A Small Mention

Earlier in the morning he had played a hockey game.

Then he swam.

As he approached me from the hotel pool, I knew.  The stumbles in his gait gave me the heads-up before the quickly whispered "I feel low" was uttered into my ear, while I stood in the hotel lobby.

I tried to get him to sit and check.  He wouldn't.  He immediately headed up a flight of stairs to our room.  This act gave me some peace of mind, his ability to climb the stairs.  As he entered our room, he crumpled.  I checked.  He was 24.  Smarties were dispensed.  Time was waited out.  Another blood sugar of 45...juice...more time...another blood glucose of 36...another juice....  He had trouble lifting his arm to man the juice; his extremities were useless, weighted down from the lack of glucose.

This past weekend, Joe and I traveled to the Montreal area with his hockey team.  Traveling in itself  can present some challenges in managing t1d.  Add in hockey games and a swimming pool ... and ... well ... jabbing my eyes with fiery hot pokers sounds like a more pleasant experience.  Joe's blood sugars usually climb to the low 300s during hockey games, due to the adrenaline rush.  I  partially correct those highs and don't cover about 20-30 grams, or so, of post-game carbohydrates.  The swimming and the scant IOB from the small correction did him in.

A few hours after the BG of 24 incident:

"Joe, did you feel low while you were swimming?"

"yes..slipped...on the pool deck...my legs weren't working right."

"Why didn't you stop?  .... for sugar?"

"I thought I had more time." (before it got bad)

"Joe, you can't do that.  You need to stop when you feel that way and eat sugar.  It's dangerous.  You could die from a low."

"I could?"

"Yes, potentially.  You didn't know that?"

"No."

"You should treat the low right when you notice it."

A few hours after the 24/He played another hockey game.

I thought he knew lows could be lethal.  I don't know why I thought this.  I never really told him that.  I just assumed he knew.  Thinking back over the years, I realize I've avoided telling him that little tid bit.  There was no reason to when he was 3, 4, 5, 6, 7, 8, 9, or maybe even 10 years old.  Now there is.  He is a 12 year old boy developing quite typically.  He wants his independence.  I want him to have it.  It all scares me sometimes..though.

A small mention of death during our day-in-the-life.

My REM Cycle

Many, many countless nights this happens to me.  The Dexcom alarms integrate into my dreams.  They seamlessly become part of my REM sleep cycle.  At times, I believe the alarms have continued for 30 minutes, perhaps longer, before I am nudged to wakefulness.

The alarms can be actual alarms in the dream; like an alarm on an alarm clock or an alarm to alarm me about a dreamt-up patient who has some impending decompensation. The alarms can also be a motor-like noise; like a noise of a broken vacuum cleaner or a dishwasher gone bad.  The alarm can also be some app on the kids' phones.  In my dreams, I'm searching through bags and backpacks, going house to house, traversing through malls, through yards, in search for the sound so that I can put an end to it's intrusiveness. 

Our Backyard/Moon

1:38am, a few nights ago..

WOMPP!  WOMPP!  WOMPP!  WOMPP!

It becomes part of my dream.

It's annoying because I can hear it and it keeps me just enough awake, but somehow I'm kind of  sleeping.  

WOMPP!  WOMPP!  WOMPP!  WOMPP!

Again, I can't quite figure out what the noise is.  I'm trying to locate the source of it as I play the main character in my dream.  It keeps my brain just active enough to prevent total rest; complete sleep.

WOMPP!  WOMPP!  WOMPP!  WOMPP!

Finally, I wake enough.  I remember Joe.  My son.  My kid who has diabetes.  The alarm is the "DEFCON 1", he is really, really, really low alarm. Another  WOMPP!  WOMPP!  WOMPP!  WOMPP! sounds off, for good measure.

I wake.  I plod into his room.  I ready the glucometer.  I lift his finger for lancing.  His hand recoils.  A "bud ... your low" is softly spoken.  His hand relaxes.  I check.  He's 51.  One glucose tab is popped into his mouth.  He sleeps. He chews.  I'm nodding off sitting by his side, waiting for the first tab to be masticated.  Tab two goes in.  He remains sleeping.  The tab is slowly chewed and swallowed.  Finally, the third tab is given.  I wait til it's gone, making sure he doesn't asphyxiate.  The basal rate is decreased by 50% for two hours.

A day-in-the-life of our nights with type 1 diabetes.

Not So Easy

Diabetes care is non-negotiable.  Joe knows it.

If Joe doesn't do his diabetes jobs, checking blood sugars and bolusing, there is a consequence.  It is the loss of his phone for the following 24 hours.  Some people think this is harsh; like he is being punished for having a disease.  Think of it this way, he is a 12 year old with an iphone.  It's not a big deal.  Not taking care of diabetes is a big deal.  It can alter his morbidity and mortality.  

A few nights ago, his head was hidden by his sweatshirt hood.  His face was buried into the couch.  An arm draped over a dog; Oscar or Henry, I cannot remember which one.  

Henry - black/Oscar - salt and pepper

 He didn’t bolus for an after dinner snack.  The bolusing is where we are struggling a bit. I was questioning him on it. 

“Why?”

No response.

Head remains buried.  

“Why don’t you bolus Joe?”

No answer.

Head buried.

Stroking dog.

“Please answer Joe.  Is it that you forget?  Does it take too much time?”

Silence.

“I’m trying to help us figure this out.”

Joe peeked up from the couch cushions, head still veiled by the hood.  “I don’t know mom.”

“You don’t know?”

“Mom, I just don’t know.”  His eyes shone with tears.

I let it go… for now.

A not so easy day-in-the-life of being a preteen with type 1 diabetes. 

The Smiley Face Did The Trick

Joe finds them annoying; the questions.  The questions a head pancreas, who is supervising a pancreas in training, ask. It was much easier when I did all of the diabetes care. 

  

“Did you check?”   “Did you wash your hands?”

“What is your number?”  “What was your number?”  “Joe, check your number?”

“What is Dexter saying?”  “What was Dexter saying?”

“Have you bolused?”  “Did you bolus?”  “Joe, bolus.”

“Did you eat sugar?”  “Eat sugar.”

“Do you have your supplies?”  “Don’t forget your supplies.”  “Go get your supplies.”

“What did you eat” “What are you going to eat?”  “You gonna eat all of that?”  “How many grams?”

“Change your site?”  “Did you change your site?”  

This is a pretty accurate blow-by-blow of our days.  Mind you, the questions aren’t asked one at a time.  They pretty much get peppered out the way I wrote them.  We ask one; no answer.  So we ask again … and … at times, a third question or follow-up statement is required.  Parenting a preteen, a preteen male, a preteen male with type 1 diabetes, can be maddening. 

Even via text… 

I think the emoji prevented me from needing to ask a third time.

A day-in-the-life of a transitioning pancreas.

The Scotch Kind

I was only in the basement for 25 minutes, working out.

I came up to this..

An old POD site, oozing blood on our kitchen counters (makes you want to come over for dinner, doesn't it?).

I look over to Joe, who is manning the POD change.

Joe..'I couldn't find medical tape, so I just used the scotch kind.'

Nice.

A day-in-the life of a 12 year old boy with diabetes.

The Use Of the CAPS LOCK Comforted Me

Facilitating independence with diabetes management in the pre-teen years is causing me much anxiety.

Joe was at an overnight hockey camp last weekend.  Camp involved multiple on-ice sessions, a water park visit, and foods Joe does not typically eat.  He spent the night in a condo with 4 of his hockey peers and a "condo" (chaperone) dad.  I stayed in a hotel close by.  I slumbered with my phone in my hand and a watchful eye on the Dexcom Share.

Here is a texting sequence that went down on the first night of camp.  His ability to use the CAPS LOCK button was comforting.

Heart pounding and mind racing...I threw on my clothes, ran through the hotel, ran to my car, drove to the condo and found Joe sprawled out on a bed, surrounded by his peers and the "condo" dad.  My eyes stung with tears.

A vulnerable day-in-the-life.

Fickle D'

"What was he?" ~ Dave to me at 3am...

"144"

My "one-eye" started to close and then I thought perhaps maybe I should ask why he was asking. 

My "one-eye" reopened ~ "Why?"

Dave's sleepy voice yammered off something about 9 glucose tabs and something about the 40s.

Me ~  "oh, I forgot to tell you that I never bolus for all of S'mores ... just half ... he always goes low after eating them."

Joe had a rough diabetes day yesterday.

6:54 am 337
9:06 am 306
10:05 am 319 (ketones 3.9)
11:18 am 248 (ketones 2.4)
12:14 pm 319  (ketones 1.4)
1:46 pm 448
2:14 pm 422
2:53 pm 406
4:01 pm 255 (ketones 0.0)
5:35 pm 56
6:56 pm 46
7:15 pm 110
8:15 pm 77
9:00 pm 80
10:49 pm 52
11:09 pm 41
11:29 pm 65
2:30 am 44
3:16 am 144


He handled it with grace.

A day-in-the-life of fickle d'

An Hour's Time...

The numbers never cease to amaze me.  How quickly they can turn on you; for the better or for the worse.

10:00 am-ish today:  BG: 319    Ketones: 3.9.  Site was removed; cannula was kinked.  Supposedly Joe had been in the 300s since 6am.  I never checked in with him about his pre-breakfast number until now (head hangs and shakes from side-to-side in shame).  New site was placed.  A "correction" of 2.3 units of insulin was given.

"How long will this last?" ~ Joe to me.  He is referring to the death-ate-a-cracker-feeling that he is enduring.

"Hopefully not more than a few hours."

Joe's sick.  Ketotic sick.  He's never been that kind of sick before.  Sure, he has been vomit-bug sick with subsequent ketones, but not vice-versa...the ketones inducing the "vomit-feeling" sick.

He is pale.  He is lethargic.  He is nauseated.  He is crumpled in his bed.  He should be at a baseball game right now.  And, sadly I actually tried to push him to go and play.  (I have a "competitive issue".... and ahhh... a "suck-it-up issue)."

Sometimes, actually a lot of the time these days...I forget that I am messing with a disease.  Not sure what I think I am doing with all the blood sugar checking and bolusing and carb counting and needle jabbing.

The "invisibilities" of  type 1 diabetes are like a double-edged sword. On the one hand, I am thankful for Joe's "normal-ness" in his appearance. His ability to run, jump, skate, bike, scooter, gallop, skip, and careen astounds us all. I am thankful for it; truly I am. On the other hand, what is difficult; what stings; what is painful is that the very thing I am grateful for is the very thing that detracts on why a cure is so desperately needed. It takes away from all that is done "behind the scenes", hourly, to ensure Joe's safety and wellbeing. The hidden sequella of it all can lull you into a false sense of comfort. It can lull the public into the inaccurate perception that we "have it under control". It has even, at times, lulled me into apathy and indifference.

An hour later...11:00 am:  Joe's perky voice is calling from his bedroom announcing his recovery as evidenced by his sudden urge to consume a fluffer-nutter.  BG: 249    Ketones:  2.4.  Carbs: 48.  Insulin Bolused:  2.3 units.

Things are going to return to "normal" quickly it appears.  The numbers, like I said before, never cease to amaze me.  How quickly they can turn on you; for the better or for the worse.  In and hour's time, things are drastically different.  Must be unsettling for one's body and subsequently for one's psyche.

A day-in-the-life of  an hour's time of living with type 1 diabetes.

His Pancreating Ways R Driving Me Cray Cray!

"Owww...HARhumph .... MOM!!!  You are talking way too loud!"

Joe and I were on the phone the other day.  He has a new Tracfone.  Dave and I had bought it for Joe as a safety-net as he undertakes all of his various endeavors before and after school, while playing with his pals in the 'hood, and all of Joe's what not.

Joe was calling me from his friend's house.  He and his friend were about to eat a snack.  Our plan was that he was going to call me with a blood sugar number and a carb count and an activity report to calculate how much of an insulin bolus to give.

Back to the convo....

Me:  "Joe, I don't know what you are talking about.  I am talking "normal"." (using an extra calm and soft, soothing voice ... yes, I have one of those)

Joe:  "Oh...I put it on speaker...oops...gonna keep it there though.  My ear is sweaty."

***Ewww****

Joe:  "We are gonna eat a snack."

Me:  "How many carbs?"

Joe:  "29"

Me:  "What was your number?"

Joe:  "Huh?"

*seriously?...how many years have we been doing this?...eye-roll...no sigh...trying to be somewhat of a good parent and pancreas all at the same time... which, by-the-way, is not easy*

Me: "Ah...did you check a number?"

Joe: "No."

Me:  "JOE, check a number."

Joe:  "OK"

*muffled voices, screams, laughter...he is having a good time*

Joe:  "101"

Me:  "What is the snack?"

Joe:  "A Popsicle-y thing."

Me:  "Is it all Popsicle? OR is there some ice cream involved with it?" (If it were all Popsicle, I would only have him cover 10 grams max.  Between the activity level and the glycemic index, Joe tends to drop like a rock when I fully cover Popsicles, juice, and the like)

Joe:  "It is like an Oreo Ice Cream Bar."

Me:  "OK...bolus for 20 of the 29 grams."

Joe:  "Bye Mom"

**********

Not sure what is going on with Joe these days.

We have been doing "Diabetes" for roughly six years now.  The last month or two have proven to be a bit difficult as Joe's independence with diabetes and "life" in general is expanding.  He meanders the 'hood on his bike visiting friends and looking for "work".  He started a Lawn Care business with his friend (his motto is "We put the CARE in Lawn Care" ... catchy).  The playdate, mentioned above, is the fifth home that he has ever gone to without me, his portable pancreas, in tow.  It is the first place that I did not train the parents in preparation for his stay.  I am becoming more and more comfortable with letting loose a bit.  He always travels with sugar. He has the phone.  He is with a friend. We always discuss, double discuss, and triple discuss our "plan" regarding blood sugars and diabetes management.

We are running into some issues though... 

1)  He isn't checking his blood sugar before he eats.

2)  I am getting frustrated. 

3)   I am sighing...out loud...sometimes. 

4)  He says he forgets.  Once he is reminded, he does it without complaint. 

5)  AND.  I catch him free-basing crackers, chips, and snack-like items when we are out with friends. 

Burnout?  I dunno.  Is he really "forgetting" to check?  It is his routine, has been for years.  I think he is he is a bit sick and tired of the never-ending-ness of it all.  I know I am.  Frankly, I am looking forward someone else supervising his "pancreating ways"  when he starts school tomorrow.  And, yes, I feel some guilt over those feelings.  Joe won't get a break.  Ever.

Joe's pancreating driving me nuts in my day-in-the-life.