Freak Show

"If he is unconscious or has a seizure - Glucagon is in his camo bag OR call me and I'll run over and give it..  AND call 911". ~  Yeah, so writing that part seems a little over-the-top..but what am I to do?  It could happen.  I like how I added in the part of just calling me so I could "run over" and whack him with the Glucagon.  It is so very difficult to not appear like a freak show.  To top it off I am sending Joe over with a jar of pickles and salami-wraps for "free" snacking into the evening hours.  Freak Show...

 

My Head On Village Person Body...Don't Ask...

 

10:56pm last evening, Joe's blood sugar was 25.  Haven't seen a number that low since he was 3 years old.

 

Tonight is the sleepover.  I am a little nervous, due to Joe's low trend through the night over the past week.  I cannot back out of this though.  I know it.  Joe is thrilled and I need to make this happen AND keep my composure to give the illusion of "normalcy".  So,  I analyzed his numbers this morning and backed off his basal rates. 

 

I then proceeded to type out "instructions" to accompany my 10 year old child. 

 

Here is what I came up with (I added the red just for my readers here on Beta Buddies.  No red was added to the actual document for "normalcy-appearing-purposes"):

 

Joe should check his blood sugar: every 2-3 hours and/or before he eats and/or if he feels "LOW".

 *Joe is going to call me with blood sugar numbers and carb counts and he/I will bolus over the phone.

 * I did talk to him about not "over-carbing".  I told him a couple of pieces of pizza were OK, but no more.  One carb snack in the evening would be OK, but he should not graze (unless he is running low, then it is OK).  It is OK for him to snack on the non-carb foods (the pickles and salami-wraps that I sent are for this purpose).

 LOWS - A low blood sugar for Joe is a number less than 70:  If Joe's number is less than 70 he needs sugar.  Sugar is in his camo-bag.  He needs either 3 Starbursts OR 3 Glucose Tablets.  He then needs to wait 15 minutes and then he should do a re-check of his blood sugar to make sure the number has come up to 70 or higher.

 If he is unconscious or has a seizure - Glucagon is in his camo bag OR call me and I'll run over AND call 911.

 NIGHT TIME CHECKS - Please check Joe before you go to bed and call me with the number.  Then at 2 am (sorry...ugh).  For the 2 am number, if Joe is < 70 please give him 3 Glucose Tablets (he will chew them while he sleeps) and then re-check his blood sugar in 15 minutes to make sure his number came up (double sorry).  If Joe is 70 - 100, please give him 2 Glucose Tabs.  If Joe's blood sugar is 100-249, do nothing.  If Joe's blood sugar is 250 or greater, then he needs a "correction" dose of insulin.

 Using the Glucometer/PUMP remote for "correction": (NOTE: You should be within 5 feet or so of Joe to deliver the insulin from the remote) Once the blood glucose number appears on the glucometer screen, you can select "bolus" (at bottom of screen) by using the down arrow to highlight "bolus" and then pressing the "OK" button.  The glucometer will then give you a menu of "types of boluses" , you will select "EZBG" using the arrows to highlight "EZBG" and then pushing the OK button.  The screen will then display the current BG/where we want his BG "120"/and a correction factor...the math so-to-speak.  Push "OK" (Joe's current BG will be highlighted).  The cursor will then be highlighting "show result", press the OK button.  There will then be a screen suggesting how much insulin to give (the amount will be next to the word "TOTAL=").  You will need to push the up arrow until the suggested amount is reached.  Once the amount entered is the same as what the Total suggested you will press the "OK" button.  The cursor then moves to "Go".  You will press the OK button again to deliver the insulin.

A day-in-the-life of authoring an "Instruction Manual" (of sorts) for Joe, my ten year old son who has type 1 diabetes.

The Dreaded "No Parent Zone"

The "No Parent Zone" sign, printed on neon green backing, increased my anxiety level a bit.

I explained (or tried to, but how on earth can anyone "get it" unless you live it) to the registration lady that Joe had Type 1 Diabetes and that I needed to talk to his instructor, give him some sugar, and have an idea where he will be on the mountain before I can remove myself from the "parent-free" zone.

Joe was on skis for the first time in his life yesterday.  Hockey is over for his team for the season, allowing time for new "adventures".  Frankly, I was nervous to take Joe skiing when he was younger.  I should have taken him, but I didn't.  His blood sugars would frequent the 20s, 30s, and 40s when he was 3, 4, and 5 years old.  I was not comfortable manning him solo on a mountain, in the cold, on skis (yes, I realize this totally doesn't sound like the Reyna and Joe that you have come to know, laugh at, and perhaps love just a bit).

Back to the sign, the registration lady, and the skiing...Joe started his day with a lesson...

The registration lady tried to usher Joe onto the back of the room to the "No Parent Zone".  I was following Joe, unwrapping Starbursts.  His pre-lesson number was 198 (it is morning, trust me...he will crash).  The lady stopped me from following Joe.

Me:  "Ahhh...I need to give him sugar"

Lady:  "Now?"

Me:  "Yep, now."

Lady:  calls over the Joe to have him come to the "Non-Parent-Free-Zone".

I gave Joe 4 Starbursts (I shoulda given him longer acting carbs, but it was all I had in my coat pocket) and sent him back into the "Parent-Free Zone."  I waited for the registration lady, who is dealing with other lesson-goers.  Once she was free, I asked if I could speak to the instructor.  The instructor was in the "No Parent Zone" and as you maybe can already tell there is no way, no how I am gonna access this "Parent-Free Zone"...and apparently the instructors don't come outta the "No Parent Zone".  So the registration lady stated that she would inform the instructor of Joe's Type 1 Diabetes, that he has sugar in his coat pocket, and that I will be located at the bottom of the hill if Joe needs me.  I watched the registration lady go tell the instructor.  I kinda waited to try to make eye contact with the instructor so that she knew what the mother (and bad-a$$ pancreas) of Joe looked like.. ya know ... in case she needed my assistance.  She never looked over.  I left feeling a bit nervous and anxious.  I was confident in Joe though.  He had sugar...he would be fine...

Off to the bottom of the bunny hill I went.  I think they really discourage this.  Oh well.  I wanted Joe to know I was there if he needed me.

45 minutes or so into the lesson, the instructor called down the mountain (hill...), "Joe's mom?"

Me:  "Yes, is he low?" (I forget he doesn't speak Diabese)

Instructor:  "Ahhh...I wanna move him up to another class.  He can already stop and turn and he belongs in the Moose or Raccoon Group, not the Chipmunks."

Me:  "Will he be going up higher on the mountain?"

Instructor:  "Yes."

OK.  So I went with it.  I checked Joe's blood sugar again (about an hour after the 190-whatever and the 16 grams of carbs).  He was 134.  I give him a couple of glucose tablets and then he is going to apparently slug back some Hot Chocolate in the "No Parent Zone".  So, I went with that too.  Just have like a smallish amount of Hot Cocoa Joe.  Yeah, right.  Who knows what he consumed in the "Parent-Free Zone".  Alls I know is that when the lesson was over and Joe was begging me to rent skis and get a lift ticket so that we can conquer the mountain together his blood sugar was 396.  I did nothing with the number.  It'd burn down.  I had more pressing issues like I was gonna have to ski.  I had not skied since 1996.  I tore my ACL (Anterior Cruciate Ligament) the last time I skied. 

Lift ticket purchased, rentals donned, I head out to get Joe off the bunny slope.  He instructed me on how to insert my boots into the bindings.  Once the skis were on, I was comforted that they felt pretty natural to me.  Off to the lift Joe and I went.  There was no line.  Once the chair passed us to scoop-up the people in front of us, I tell Joe to hurry and get up to the loading line.  I then heard him say "crap"...as, I got scooped up by the chair; Joe did not.  He had dropped a pole and was two chairs back from me on the lift.  The people behind him are yelling at him to pull his safety bar thing down.  He did.  The only comfort to me at this point is that his number was 390-something the last time we checked and that he could not possibly be low and dangling 30 feet over the earth, solo. (Now let me insert here that most parents would be worried about their kid  dangling precariously over the earth while trying to man poles and while swinging their skis a bit too wildly - in my opinion... especially when it is their kid's first time on the lift, I think the diabetes just escalates that worry and I was so very, very, very calmed by his previous high-ish number...trying to not think that perhaps his vision may have been a bit blurry with the high.)  Anyway.  He exited the chair like a pro.  Off we went to enjoy some green circle runs.  We did several of the same run...off the same lift.

Then...

We decided to mix it up a bit.  We tried a new lift.  This lift looked long.  This lift had some sort of midway exit.  As we approached the midway exit, Joe thought perhaps we should get off.  Me?  I thought what the heck?  We should scope out the top.  So, up...up...up we went.  When we exited, we had two choices to get down the mountain.  A blue square to the left or a blue square to the right.  We took the blue to the right.  It was narrow.  It was icy.  I think I maybe said some inappropriate things. 

I finally talked him into lunch.  BG was 262.  He ate.  I bolused for the majority of the carbs, but did not "correct".  Out we went, for more.

By the end of the day, Joe and I were sticking with our first lift/run combo.  Joe would mix it up a bit and go on different runs than me and we would meet at the bottom.  One time I was waiting and waiting and waiting for Joe.  Lunch bolus was on board.  It had been about an hour since he had eaten.  Nothing scares me more than losing him.  It isn't just the losing a kid thing.  It is losing the kid and people not knowing about the blood sugar business thing.  It is the lost in the woods...comatose from a low... in the cold ... kinda thing.

Welp, he was fine.  Apparently he decided to go off some sort of wooden-ramp-jump-thing and did a face plant.

A day-in-the-life of adventure with Joe.

Who Has DONE IT On Stilts?

Joe did.  Yesterday, after school, I saw my kid strutting his stuff on stilts.  Routinely we check a blood sugar upon dismissal.  Yesterday...we did it stilt~style.  Joe's blood sugar was 133.

Why the heck was he on stilts you may or may not be wondering. He and his friend are performing a stilt routine in the Talent Show today... yesterday was the dress rehearsal.  And yes, I realize the stilts look a bit "Forrest Gump-ish".

Checking blood sugars in our day-in-the-life.  A cool, bloggable, moment.

"May the Fourth Be With You"

So, did I ever tell you that the recessional at Dave's and my wedding was to the Imperial March ? You know Darth Vader's Theme Song...

Personally, I called it the "Death March" (that is a story for a different day though).

Nah... I don't think I have shared that before.

What about Dave's very Yoda-esque statement one evening when we decided to let a blood glucose of 220 "ride" without correction? Have I told you about that? I think I did during last year's Blog Week hosted by Karen at Bitter~Sweet (click here for details on this year's Blog Week, which starts next Monday, May 9th).

The quote...

"An A1C does not one high night make."

Deep, profound, and sleep allowing. We would not need to get up in 2 hours to recheck a bolused and potentially low Joe. Instead we got 4 hours of sleep to check a potentially even higher Joe, but it provided some much needed "sanity" and laughter in the moment.

Happy Star Wars Day!

No, I am not making this shit up. It is actually Star Wars Day. And. Believe it or not, I have even written a post about Star Wars and Diabetes...only me.

A Long Time Ago (like a year and a half ago)

In A House A Few Blocks Away (remember we have moved)

A Post Titled "Mom How Can I Win The Empire With You Checking Me"

Was Written by Yours Truly

And Then Rewritten Today

Weekend mornings are "hockey mornings" in the Maher home.

Joe has really shown an interest in this sport. He practices every Saturday and Sunday morning with the "Blue Crew." These practices have been a blood sugar buster. Not only is hockey an extremely physical sport, but practice times are rotated. Sometimes Joe eats breakfast before he goes to practice and sometimes he does not. As, I have mentioned time and time again Diabetes has an adulterous affair with "routine"... it loves it, it craves it, it wants it in the worst and most primal of ways.

I digress.

Anyways...

With the insulin on board from breakfast, Joe tends to go low even though many carb grams are given freely to boost him prior to practice.

Yesterday, I gave him a really low dose of insulin to cover his carbs for breakfast and he ran in the 300s and 400s during practice and after. So, when we got home I gave him a correction dose of insulin (only 1/2 the dose the pump recommended) to try to get his blood sugar (a 420) down.

A couple of hours later...

I go to check his number while he is playing Lego Star Wars on the X-box. He is using both hands on the X-Box controller. As I try to lance his finger, Joe emphatically states "Mom, I can't win the Empire with you checking me!"

A in-the-recesses-of-my-mind "for f*ck sake Joe" was muttered ... accompanied perhaps with a ever-so-slight eye roll, as a smile crossed my lips and face.

My response ... "Of course, Joe win the Empire" ..."just do it in a few minutes-OK?"

A couple of minutes later, Empire won and all, Joe did his blood sugar check. A 183 was obtained.

A day-in-the-life of recognizing that childhood trumps diabetes.

FOOD RAGE IN THE BUFFET LINE

WARNING...You may not want to read on if you are a Disney World lover or if you are easily offended. You know me...I am going straight to hell for my impure thoughts in the "happiest place on earth."

A few posts ago, I had mentioned that the Maher's had been a little M.I.A. lately. A large part of the M.I.A. was that we had surprised the kids with a trip to Disney World.

I am a "home-body", not a big vacation girl here...and furthermore, don't particularly care to be overstimulated non-stop every waking hour. I hate lines and am not a big fan of rides that transport you through "scenes" that are meant to entertain you...so you can imagine the scandalous and less than nice thoughts that traveled through my twisted brain while hanging with Mickey, Minnie and the crew.

Let's see where to start?

Well, I could tell you about incident in Epcot when I whispered to my Mother-In-Law that I wanted to go tell "Marie" from the Aristocats to "get her furry a%* back to the line and sign my daughter's autograph book" after she left right when it was Bridget's turn...but, it isn't really D-related, so I'll scratch that story...see I truly have issues.

Or,

I could talk about the swarm of mom and dad stroller-pushers that used their strollers as "cattle prods" to out-inch and out-maneuver those of us on foot...blocking us at every turn trying to reach the coveted line to the Princesses and Fairies after Toon Town opened in the Magic Kingdom...rolling over the back of my flip-flops, ircking me off, and then racing Bridget and I to be first in line...but, nah...again, not D-related...this one I think anyone would be annoyed over BTW.

So, that leaves me with the GREEDY GUY in the BUFFET LINE.

The point of this story is how I once again get screwed out of food because I am ALWAYS the last to eat. It has somehow become my DUTY to do the diabetes care when we are out, at social functions, sitting down to dinner at a restaurant etc...So, without further delay...The FRIED SHRIMP STAND-OFF with the guy in the buffet line.

Each night in Disney we had reservations at some "Country" in Epcot or at a Hotel where inevitably a buffet of food was being served. You can imagine the "joy" of walking a self absorbed, overstimulated, over tired, diabetic 6 year old BOY through a buffet line. I had to remind him that "hello...there is a line here" and to wait his turn; to watch out for others etc. etc. etc. I was left to discuss food choices, measure, guess on carb counts of foods from all around the world...I threw caution to the wind many nights in Disney for sure. Once we got back to the table, I would get Joe's bolus cranking for the food on his plate. Then I would head back to the buffet line to make myself a plate.

On the night in question, the buffet happened to be fish. I was going through the main course line...and just wanted to try a couple of the fried shrimp. Unfortunately, at the time I was in the line the fried shrimp were all gone. No worries, I had plenty of other foods to choose from. I figured I'd hit the fried shrimp on my second pass. So, I went back to the table. I eat a few bites of my dinner and then, of course, Joe is ready for "seconds". I take his "order" and then head back out to the buffet thinking that I'll go get my fried shrimp.

The fried shrimp was at the VERY END of a LONG line for the seafood. I ONLY wanted the fried shrimp and just a few at that. So I "park it"...across from my food of choice...hoping to hop into the line once it thins out (I guess you could call it "cutting in line"). I see a rather large man making his way up the line and there is a BIG BREAK in the line after him. So, I am thinking Great, I'll just grab my shrimp after he helps himself. Well, doesn't this guy take spoonful after spoonful after spoonful after spoonful...after spoonful (I added an extra "after spoonful" for good measure) of the fried shrimp. SERIOUSLY?! By this point, due to his greed and gluttony, not only are there a limited number of precious shrimp left but there is no longer the nice big break in the line for me to "cut" in. An elderly lady is now hot on his heels. She arrives at my desired platter and SLOWLY grabs her serving of fried shrimp, one shrimp at a time with TONGS mind you...it takes FOREVER...and once she's through there are only like a couple of shrimp and crumbs left in the pan. At this point, I am DONE. I cut off a lady at the butter dispenser, I grab a butter bowl and scoop up the remaining shrimp...I was not even gonna deal with those cumbersome tongs and I then march off...back to the table in a bit of a huff.

Can anyone say "FOOD RAGE" issues here...

So, you must think I am a "hot head" when it comes to my food. I feel somewhat selfish for even mentioning this...but it is truly how I feel, so here goes. I guess what bothers me is that so often my needs...especially when it comes to eating with the family are placed on the back burner...EVERY TIME. I make sure Joe's food is measured, weighed, carb counted. I ask him to wash his hands and check his blood sugar. I am the one who directs the bolus or does the bolus...and only then, at that point, do I get my food and sit down to eat. By the time I sit down, Joe is more often than not ready for seconds...so that requires the whole process to begin again...measure, weigh, bolus. So, yes, I am somewhat resentful about the "eating situation" at times...and the "Stand-off in the Buffet Line" over the Fried Shrimp exemplified this perfectly. I overreacted (internally...trust me I was a model of patience and grace externally...seething mad internally), ready to combust over "normal" buffet-like behavior, especially for a guy with a large habitus. This resentful, food-deprived, D-mom realizes she needs to DELEGATE a bit more so that she can get a GRIP.

So for a little therapy...an apology letter...

Dear Overweight Guy in the Buffet Line (taking WAY more shrimp that you should be BTW),

I am so very sorry for my impure thoughts about the portion of fried shrimp that you served yourself in Disney World. I know it is none of my business what-so-ever, what you eat, how much you eat, etc. I don't know what came over me.

You see, my family...especially Dave, Bridget, and I have been sneaking food for years. Yes, I realize this is "unhealthy" behavior. We are trying to avoid having to deal with bolusing Joe with Insulin for extra carbs or unknown carbs. Also, I am a bit bitter over the fact that I am ALWAYS the last to eat. In line, that night...with the shrimp...I was LOSING IT because not only was I the last to eat, but you were holding me up further by serving yourself an ENORMOUS...make that a GINORMOUS (gigantic + enormous) portion.

Anyway, I realize I had an extreme reaction to "normal" buffet-like behavior and I am going to acknowledge my problem. I will work on my FOOD RAGE issues...and possibly see a therapist...or better yet...I'll BLOG about it.

Sincerely,

Reyna Maher

Joe's inefficient and at times psychotic pancreas