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.

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.

I Let The Dirt Bike Comment Go...

A couple of days ago...in the car, on our way to school...

"OK Joe, so I'll bring your LEGO Ninjago Space Ship~Thingy and Catching Fire for the Endo visit." No comments on the Catching Fire. Bridget read it. Yes, violence. Yes, it, the violence, isn't as "depersonalized" as Star Wars with it's Lightsabers, or as Harry Potter with it's "STUPIFY", etc. I know ... kids killing kids with spears, arrows, and hand-to-hand combat that is organized and sensationalized by the government to instill fear in the "governed" seems to be a bit inappropriate for an eight (almost nine) year old. After typing that I realize that... indeed ... yes, I suck.

Back to the story at hand...

"Oh... and... Joe, please try not to laugh when the doctor examines you. He is a diabetes expert and he needs to look you over to see how your body is doing with diabetes."

In the rear view mirror, I see Joe's eyes widen. "You mean he is the best at diabetes in the world."

"Ahh. No. Well, I don't know exactly Joe. Let's just say he is the best at diabetes in children in our region. How's that?"

"mmmm" Joe seemed satisfied with my shifty response.

I dropped Joe off at school. I had a couple of hours before I needed to return to grab him for the Endo appointment. Now, usually I am not too thrilled to be going to Endocrine appointments. It seems that they coincide with a bad batch of blood sugar trends. I have felt that I was going in to "face the music". I have had "defensive manifestos" prepared for my actions with the pump, with boosting, with letting the settings ride. This time, however, I felt confident. Joe's numbers have been steady. Diabetes has been in the periphery of our day-in-the-life. Joe's last A1C was 7.3%; his highest, since pumping. I was hoping for a 6.6 to a 6.9%.

With Lego Ninjago thingy and Catching Fire in hand, I collected Joe from his school and off to Endo we went. While entering the parking garage, I saw a stretcher with a covered body being loaded into a hearse. I scope out Joe's focus. He saw it too; the body. He thought it was being loaded onto an "ambulance" and he did not understand why the persons head was "under a maroon colored sheet". I explained that the person was dead and that the body was being taken for burial. Joe chimed in "so the doctors did everything they could to save that person and they just couldn't". So... do I just go with it? Or, do I let him know that "life" isn't always the "best outcome" for the patient. I let him know ... the truth. This upset him a bit. The part that a person would choose death over treatment options. He wanted to know that I would always choose to treat anything that comes my way in the "medical condition" department. I reassured him that I would at this stage of my life... that I would do everything possible to ensure that I would be here for he and Bridget. A simple "good", was his response.

After the "body" sighting and deep discussion we headed into our appointment.

The Endo visit was uneventful. Joe's A1C was 6.9%, with a fairly tight standard deviation.

We checked out. On the elevator to the parking garage, an elderly man in a wheel chair joined Joe and I for the ride. I looked down at the gentleman's feet. He was missing one. His prosthetic was visible. I notice Joe's eyes were taking it in (face palm... I don't think I can handle another deep convo with this kid today). We departed from the elevator; from the one-legged man. Joe said nothing for a few moments. Then... "I think he lost his foot racing dirt bikes Ma."

A day-in-the-life of trying to parent a kid through doctors visits at the hospital.