Life Support Fad

 A fad or trend or craze is any form of collective behavior that develops within a culture, a generation or social group and which impulse is followed enthusiastically by a group of people for a finite period of time.

More on track ...

I don't think about it much.  They are a part of him; his CGM and his pump.  When I see him, I see Joe.  The devices are a seamless blur on the backs of his arms.  They help keep him safe; alive.

I remember when he was three.  I remember when the choice was made to start him on the pump.  It was a mere three months after his diagnosis; maybe not even that long.  I struggled with that decision.  Between the meals and the snacks, between the needles and the blood, and between the monitoring and the carb counting... he looked typical.  There was nothing "visible" about the disease.  There were no reminders that he had a chronic condition.  He looked like his peers. Adding technology, adding devices changed that.

Joe has never felt the need to hide his diabetes.  He wears his pump and CGM where people may see them.  Sure he gets questions. Usually, he responds to them.  Sometimes, if he is focused on something else, he may divert the conversation elsewhere. 

Last week, while we were at the track meet where Joe learned about kidney-pancreas transplants...

I was timing with a group of parents.  Joe came over to me, to my purse, for money.  As he walked away, a parent commented on the "new fad".

Timing Lady: "What is this new fad?"

Me:  "What?"

I followed her line of vision, she was watching Joe walk away from us.

Timing Lady:  "I've seen a lot of kids wearing those, what are they?  ... on the back of his arms?"

Me:  "OH."  I then saw what she saw.  "My son is a diabetic.  That is his insulin pump and a continuous glucometer."

Timing Lady:  "I thought it was some new kind of accessory the kids were wearing on their arms."

Nah,  just life support.

The "craze" of sporting some life support in his day-in-the-life.

Not the "Cure" I Would Want for Him

Joe ran up to me, as we were leaving his track meet yesterday.  An excited  "Mom, I just met a man who said he 'used to have diabetes'".

I looked directly at Joe .."What?"

"Yea, he saw my pump and then told me."

My head did a subtle side-to-side shake.  My mind then went to the word "whack-a-doodle".  I was worried Joe had ran into someone who gave him false hope; someone who was telling him a tale about a Dr. MoonLoveJoy who cured his diabetes with a rainbow, sparkling with unicorn horn dust.

"Joe, don't believe it.  Whatever he told you isn't true.  There's not a cure for type 1."

"He said he got a kidney-pancreas transplant."

Oh.  Now.  This changed everything.  "Yes, then yes.. he is technically cured.  But ... Joe ... that isn't the way you want to get a cure ... by having your kidneys .. fail."

Joe and I talked more about transplants.  I used to take care of  kidney transplants post-op.  Typically, a pancreas transplant takes place in a person with severe t1d who is also in need of a kidney transplant. The transplanted organs require life-long use of anti-rejection medications.

"So, you don't typically see a person just receive a pancreas transplant."

"I know mom ... I wouldn't just get one for sh*#'s and gigs."

Ha!  "No Joe, you wouldn't just go get one for the heck of it.  Anti-rejection drugs can have some serious side effects."

As we drove home, we talked more about kidney failure.  It's been years now.  Years, since I've thought of this manifestation of poorly controlled t1d.

A day-in-the-life of talking organ transplants with my 13 year old.

Insulin Reigns Supreme

D' Blog Week:  Day 4:  I went with the Wildcard of getting physical.  Managing diabetes during exercise can be tricky, so share what works for you or your loved one with diabetes and maybe it can help someone else.  What do you do when you want to work out, but your blood sugar is lower or higher than you would want?  How do you cope with this?  Or how do you manage gym days at school for your child with diabetes?

I was living the dream...

Pancreating for a stubborn three year old who was as active as a rabid squirrel ingesting cases of Red Bull.  Fast forward 10 years ... I've learned a few things about t1d and activity.

Never, ever, never, ever, never, ever, never, ever, never underestimate the power of IOB (Insulin On Board).  If possible, I try to have Joe avoid a large bolus of insulin within 2 hours of a workout that will last for an hour or longer.  We don't correct highs (up to 300) and do about 1/2 correction for a BG over 300, before a workout.

Never, ever, never, ever, never, ever, never, ever, never underestimate the domination of insulin.  Joe's preferred sport is ice hockey.  During practices, we struggle with lows.  During games, we struggle with highs.  For hockey practice, I decrease Joe's basal by 40-50% starting about 1 hour prior to practice and keep it decreased for the duration of practice. He typically drinks a chocolate milk (28 grams CHO) before practice to "boost" his BG.  He drinks a Gatorade (another 20-something grams CHO) during practice.  And he typically has a "free snack" (18-30 grams of CHO) after practice.  During a game, his blood glucose will spike up to the high 200s to the 300s.  We typically do a 1/2 correction after the game and this will bring his BG back into range.

Never, ever, never, ever, never, ever, never, ever, never underestimate the potency of insulin.  Have access to plenty of fast acting sugar sources and longer acting carbohydrates during periods of activity.  Fast acting sugar is great for heading off an imminent low and then follow-up with something more complex to keep that number up.

In addition to our ice capades...

Joe also participates on his school's track team.  The practice is held at school, immediately after school is dismissed.  I added a "sliding scale" of sorts on his daily diabetes log.  I used to do something similar for PE days.

A person with t1d can be active; they, like all of us, should be active.  Yes, they need to pay attention to BG trends and what works and what doesn't work.  The above tips took years of logging and tweaking and will inevitably change over the next few years.  Also, sugar sources are a must if you are going to work out.  Have them on your person.  Have a stash of change to buy sugar.  I've had to raid vending machines after depleting our Skittles supply during hockey practices.  Just be prepared for the unexpected.  It happens.  But, it shouldn't deter you from getting out there.

A behind the scenes look at what goes into an active day-in-the-life of living with t1d.

"This Isn't Diabetes 101!" ~ Reyna Maher

D' Blog Week: Day 3:  There is an old saying that states "Sticks and stones may break my bones, but words will never hurt me."  I'm sure we've all disagreed with this statement at some point, especially when it comes to diabetes.  Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes.  For some, they don't care, others care passionately.  Where do you stand when it comes to "person with diabetes" versus "diabetic", or "checking" blood sugar versus "testing", or any of the tons of other examples?

The following doesn't happen all to often.  Well the "mascara part" does; that happens daily.

Typically, when it happens, it's in the morning as we prepare to get the kids off to school and the adults off to work. 

Typically, it's when Joe has forgotten to check a pre-breakfast blood sugar and Dave hasn't followed-up on making sure he has checked a pre-breakfast blood sugar.  Where am I?  You may be wondering and asking.  Well my eyelashes aren't gonna mascara themselves, are they?

So, typically...I come downstairs and ask about Joe's number only to find out no number has been checked.  My eye balls kinda bulge outta my skull and I then go all scholarly on Joe and Dave and say something like...

EYES BULGING OUTTA SKULL (note mascara use though)

"Guys, this isn't Diabetes 101!"

I then lecture them up and down about checking a morning blood sugar.  Ummm, they know this.  We've been doing this for 10 years.  I'm thinking we have enough Diabetes credit hours to have earned a Bachelors, and a Masters, and a Doctorate (a few times over).  

Dave and Joe laugh.  

Eventually, I will too.  

I do temper my behavior at some point in the interaction, reminding myself of the power of my words and actions.  I recognize the need to be authentic and real.  I don't think Joe is fragile.  I certainly don't handle him with kid gloves.  

I have, however, measured my words over the years.  

I never use the phrase "test your blood sugar."  Testing implies passing, or worse ... failing.   I also try to avoid saying things like "that's a good number" or "that's a bad number."  I try to view all blood sugar numbers as data. I am thankful for any data that could help guide decision making in Joe's care.

I also have some reservations about labeling Joe a "diabetic".  It's never seemed natural to say something like "my son is a diabetic."  So I've never said it.  

And...for some reason, I take pause with the word "disease".  To me the word means sick.  I tend to lean toward the word "condition", which really doesn't sound any better...oh and there is the equally unhealthy sounding word "disorder".  I use the words, once in awhile, but they don't roll off of my tongue.  Perhaps it's hard to accept words like illness, condition, disorder, and disease as a part of your child. 

A Diabetes 101 lesson on talking about the day-in-the-life.

Acceptance

Blog Week:  Day 2:    We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally?

The psycho-social-emotional toll of t1d has never been lost on me.  The micro-management of food.  The time the care takes.  The numbers "rating" how one is doing at managing the disease.  The stares.  The less-than-helpful, well meaning, misinformed comments.  And... I am sure the physiologic effects of the highs and lows impacts one's sense of well being.  Absolutely.


But..

I'm not gonna write about any of that today.

About a week ago.. as I was walking home after a run, I saw Joe headed down the street to our neighborhood.  His gait was slow.  His shoulders were slouched.  He then slumped down onto some one's lawn.

This happens.  When he gets a kinda badish low, his legs stop working.

I approached him.  "Hey..you low?"

The mouthful of Skittles provided the answer.

"You want me to run and get the car?"

"No,  Mom wait...I'll walk home with you."

Once his low released it's hold on his legs, we walked and talked and discussed Joe's day at school and then at track practice.  Somehow we got to talking about friends and then diabetes got thrown into the mix. Joe said something like "I just make jokes about my diabetes to my friends."

"What?"

"I try to make them not scared of it.  I figure if I make it into something funny, they'll feel more comfortable around me."

This kinda made me mad ...and ... well, sad too.  This disease demands enough out of Joe and the thought of him worrying about trying to make it better for his friends just annoyed me.  Not at him.  Not at his friends.  But just annoyed and mad and sad at the situation.

Trying to make his day-in-the-life a little comical for some acceptance from his buddies.