#DAM Drinking Plan

#practicalJoe #adrinkingplan?

A couple of weeks ago, in the car, on our way to hockey...

'Well I don't like carbonation, so no beer.'

'Joe, there are other types of alcohol.'

'I don't see any point in drinking, it seems dumb ... and it costs money.'

While I appreciate his 15 year old views on alcohol consumption and his aversion to all things carbonated, this is a conversation that will need to be re-visited over the years.

'Joe, you may change your mind. I know how things go.... You may try drinking at some point. The important thing is that you have a plan.'

He was looking down at his phone...I think I lost him😔.

But, I kept going. This topic...is another anxiety inducing topic for me. You see, the liver is not a great multi-tasker. The liver can be helpful if you are having a low blood sugar, it helps release glucose into the bloodstream. But, if alcohol enters the picture, the liver moves detoxifying the alcohol to priority number 1. This can cause severe hypoglycemia ... add in that you might be passed out drunk...in the early morning hours; this is an extremely dangerous situation.

'If you do decide to drink, you will need a "plan". It is something we should talk to your doctor about. The plan may be as simple as eating an extra snack before going to bed, or checking your number more often, or not drinking on an empty stomach....'

(I think I talk too much)🤔

As the "drinking plan" discussion came to a quiet end, I realized "the drinking plan" sounds like way too much responsibility for a partying, possibly inebriated college-aged male.

Who am I kidding!? I'm humbled.

#makediabetesvisable #t1d

#DAM D' Drama

#d'rama on day 5 of DAM ...one would think having a month dedicated to awareness should be enough.

#nothingscaresthebejeezusouttaadmamalikeastomachbug

11:30-something last night...while I was sleeping...

I hear a 'I've been low for hours...had 4 juices...stomach doesn't feel good'...my eyes snap open👀. Joe has a death ate a cracker look to him. His number is hovering in the 50s and 60s. The only thing I can do here, is to turn his pump off for a couple of hours and pray to all that is good and holy that he doesn't have a GI Bug.

2:17 a.m. - The retching sounds let me know that the good and holy unleashed the bad and evil. 🤮
Since, we have checked blood sugars every 2 hours, ketone checks every 4 hours, hydrated and bolused insulin as aggressively as his BG allows.

A GI illness can (and has) meant a trip to the ER for Joe. For a person with t1d, GI illnesses, common colds, and influenza can be dangerous and can lead to hospitalization and even death.  

#getaflushot #washyourhands #stayhomewhenyouaresick
#makediabetesvisable #t1d

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28

#DAM Fall Back

#theoneeye 👁️

Many nights, that's all it requires; one eye. There's an internal 2-ish a.m. alarm in me. I wake. Eyes closed, I fumble for the phone on my nightstand. My right eye reluctantly opens. It scans the Dexcom app to make sure he is at an ok number.

The app will alarm if he goes below 70 or above 300. I don't have it on for other deviances, like if it loses signal or rapid drops and climbs...if I did, it would alarm all.the.time.

Last night was a good night to sleep. #thankful
#makediabetesvisible #t1d #needtotweakbasalrate

T1d people change time on your pumps! 🕑🔄

1 Comment

33

#DAM The 9 Lives of Joe

I have many fears re: Joe and diabetes. One of them is he goes into an empty locker room while low. I worry he'll lose consciousness and no one will find him for awhile.

A week, or so, ago...

At the end of hockey practice, Joe headed into the locker room. His Dexcom picked up his signal. The CGM app alarmed 43 and arrow diagonal down.

I sat on a bench in the rink's warm room, my eyes glued to the locker room door ....hoping, wishing I'd see him any moment ..how long should I wait? Another 2, 4, 5 minutes? Then what? Send in some random guy to see if he's still conscious?

😩*Joe would KILL me* 😬

So, I waited some more. Then, finally, I saw him lumbering out of the locker room. My heart.

#makediabetesvisable #t1d

#DAM Broom Closet Bolusing

While I admired his initiative, a broken insulin pump, mid-vacation, at 7:30pm, on a weekend is not a time for amateur hour.

This past summer...during vacation...while we were eating dinner with family...

Joe's pump failed. He excused himself from the dinner table to replace the pump. He's been independently changing pump sites since he was 9. So, when I heard the 'Mom, I need help!' yelled down the stairs, I was surprised 😳.

As I entered the bedroom, Joe gave me the lowdown. He apparently tried to change his pump, but the pump had malfunctioned, gave an error message requiring a call to the company. Joe apparently looked up the pump company's number on his phone. He called the pump company where he and the representative attempted to revive the pump to no avail. 😳 I guess it was at this point the pump company rep realized Joe was a minor...🙄

'Mom, you need to call them back...they need to talk to someone over 18 to ship out a new pump.' 😑
 
🤐(*#$ #@$& $@&#)🤐

The abbreviated version of what transpired after: I called Omnipod. Pump was broken. 😑 They overnighted one to us on vacation. Which was actually two days.. because late hour on a weekend day😢. Luckily (or maybe not) I brought a 9 year old, discontinued "back-up" pump. 😟 PROBLEM...pump LED light could only be barely seen in pitch-black broom closets🤬...and piston sounded bogged down (by sand?)😵. Anyways, I decide to go the shot route for basal insulin and plug him into pump for boluses. PROBLEM...we didn't have basal insulin. Called on-call MD for Lantus order. Ran to pharmacy to get Lantus and syringes. Next two days consisted of broom closet bolusing 🤓and a shot of Lantus.
 
#omnipod #animas #makediabetesvisible #t1d #travelingw/t1d

#DAM It Is Not

12 long years ago Diabetes Awareness month became a 'thing' I think about on November 1st. He's living well. He's strong. He's grown up ahead of his years. I don't say much about it these days, in part because everyone has their 'thing'...know this, we are still here doing fingersticks, counting carbs, dosing insulin, battling highs and lows day in and out. We make it look easy. It is not.

#makediabetesvisible

1

The Mirror

As we walked side-by-side through the parking garage into the hospital yesterday, his 6' frame towering over me...he said 'I don't really even think about having diabetes except on Endo days and sometimes when I have to check a number.'

'Really?'

'Yeah'

He then went onto say something that briefly caused my eyes to sting.  He said, 'it's weird, but when I look in the mirror...I don't see my POD anymore.  I don't see the CGM.  I just see me.' 

When Joe thinks of himself, he says diabetes doesn't even enter his definition of who he is.

The Endo appointment went well.  Joe continues to do the majority of his care.  He is an active high school freshman and manages to juggle school, being an athlete, and managing diabetes successfully.  His A1C was 7.  A fine number considering his growth and his independence.

He turns 15 at the end of April.  We discussed his drivers permit with his endocrinologist.  You see, driving with diabetes adds another element of risk to just the act of driving.  People with t1d need Medical Clearance Paperwork, in order to get their driver's permit or license.  When Joe starts to drive, he should check a blood glucose prior to driving and every hour if he is driving for more than an hour's time.  He should not drive unless his blood glucose is 90mg/dL, or higher.  Driving low is more dangerous than driving inebriated.

I'm not sure how I am doing with all of this.  Actually, that's a lie.  I do know how I've been doing.  I've been fairly anxious.  High school has been more of an adjustment for me...than for him; I think.  I have had to back off as a hands-on pancreas and trust that I have taught him well.  I have.  Can I just say, at this age, sometimes having that damn Dexcom is a blessing and a curse all in one.  Watching his blood sugar remotely can cause my mascara-fringed eyeballs to bulge outta their orbits when his number is tanking to the 40's, while he is at school or at a hockey practice.  There isn't a darn thing I can do to help him.  I watch.  I wait.  I worry, then I hope and I trust things will be OK.

A day-in-the-life update.

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.