Manager, Not Controller

Manage vs. Control

I keep seeing or hearing people write or ask about “controlling” diabetes.  

“You’ll get control of it”   

“Do you have it under control yet?”

I know I’m about to launch into a semantics debate, but it’s bugging me.  We don’t control diabetes; it controls us.  However, we can and do learn to manage this beastly disease.  There IS a difference.

According to Dictionary.com:

“Manage” is defined as ‘to bring about or succeed in accomplishing, sometimes despite difficulty or hardship’ and ‘to take charge or care of’.

“Control” is defined as ‘to dominate’ or ‘to eliminate or prevent the flourishing or spread of’. 

I really should stop right there.  Enough said, right?  But, no.  I’m not one to hold my tongue if I’m passionate about something.  Just ask my friends J

You see, as a T1D parent, I cannot ‘control’ diabetes.  I cannot dominate it; I cannot (much to my chagrin) prevent it from flourishing or spreading.  I can, however, ‘manage’ this craptastic disease to the best of my ability.  I can try to ‘accomplish’ ideal blood glucose numbers ‘despite difficulty and hardship’.  I can ‘take charge’ and ‘take care’ of my boys and their condition to the best of my ability.  I can manage their day-to-day life so that I worry about diabetes, they worry about being kids.  Every day is different.  Every day is new.  And, I am in control of none of it!

At work, I manage people. We work together.  I try to positively influence them into performing the best work possible.  Most nights it works well.  At no point in time, however, do I ever control them.  They are intelligent autonomous creatures who can buck in a minute!  Whatever is going on in their worlds can impact how they perform, despite my best efforts. 

Much the same, I can manage a patient textbook perfect, but Mother Nature controls the ultimate course of life!  Like Diabetes, I can do everything perfectly, I can manage perfectly, but there are factors I cannot control that impact the outcome.

At home, I manage children.  Positive and negative reinforcement.  Discipline and consequences.  Trying to get five boys to do their chores, do their homework, not fight, not scratch themselves in front of their mother, and bathe appropriately is no easy task, but I MANAGE.  I’m not foolish enough to think I control because they all have great stubborn will and autonomy, and they will “forget” (conveniently), be moody, and argue if so inclined.   Scratch away, they will! I can manage the situation, I cannot control their wills.  Some days, no amount of bribery, positive reinforcement or persuasion can convince them to cooperate.

Same thing with Diabetes.  I manage it.  I work with food, insulin, glucose meters and logic (Sorcery, Science, Math, and Voodoo) in attempts to yield the best results possible.  Unfortunately, diabetes is a petulant child. I can sweet-talk, bribe, and make promises, but it will NOT be controlled. One day, Diabetes will respond to my efforts, the next day, it won’t. As a matter of fact, if D thinks I’m getting the upper hand, he will fight back in his ardent refusal to be controlled.  Diabetes gives ME positive and negative reinforcements. Diabetes scratches his privates in front of me on a regular basis! Diabetes will cooperate one day, but refuse to play by the rules the next day.

Diabetes is an invisible foe who hides around corners and sneaks up behind you when you’re not looking. Diabetes will give you the illusion of control, but ultimately, D is in control! (We’ve had a decent week of numbers, so I’m just waiting for Diabetes to resume ‘control’ of the situation and make me work to ‘manage’ it all over again!).

So, until a cure is found, neither my boys, Jerry, nor I will ever control the situation.  Instead, we’ll attempt to manage it.

Off my soap box.  (Should I get started about ‘your vs. you’re’?  Their vs. They’re vs. There?)

Rhonda

Attached at the Hip

March 24, 2013

Attached at the Hip

Reading another D-Mom’s blog a few days ago and talking to a few D-parents last night inspired this blog.  We all went out to dinner sans kids, and we all had our phones attached to our selves.

I grew up in the day where you called land lines, paid for long distance, heard that annoying busy signal, and left notes to tell your parents where you were, when you’d be back, and what number you were at.  If you left without leaving a note, there was hell to pay!  If someone didn’t leave you a note, you’d look frantically around the house, call every house you knew they’d be at, and you had to anxiously wait for them to come back.  Oh, those were the good ol’ days!

I was a cell phone hold out.  In 1999 when I met my husband, I still did NOT have a cell phone.  I’d joined the techno world by having a pager, but that was it.  I didn’t want anyone to be able to access me at all times.  What was wrong with paging and waiting for a return call?  Leaving a voice mail?  Or, *gasp* calling back at a later time?  I don’t remember when or why I finally got a cell phone, but I traded the old pager in for one.

I still have a land line.  I’m not one of those people who give everyone my cell number and who receive all contact through those invisible signals in the sky.  Mostly, because I work nights, and I don’t want every Tom, Dick, and Harry to wake me up during the day with things that can wait.  Much to my husband’s chagrin, I still keep a land line at the house. 

Since 2012, having this cell phone has become critical.  I’m one of those weirdos who keeps it attached at the hip at all times.  When leaving the house, ‘cell phone’ is on the check list of things I must have, along with the diabetes bag.  I’ve turned around many times to go back for it! It’s not because I’m afraid I’ll miss a Facebook status update from someone I haven’t seen in 10 years.  It’s not because I may die if I can’t crush a few more candies.  I don’t need to fill every down second with a piece of electronics in my face.  Nope.  I keep it attached because at any given time, there could be an emergency with my sons. 

One wrong move could land them too high or too low blood sugars.  Seizures, loss of consciousness, accidents, comas.  Hasn’t happened yet, *knock on wood*, but it’s all possible. Unfortunately, I cannot be with them at all times, and I HAVE to be available for a phone call to answer a question about how to manage a situation or respond to an emergency. On the flip side, when they are with me, I need it in case there is an emergency!  I’m tethered either way.

 Shortly after Aiden’s diagnosis last February, I was walking into Sam’s Club to shop while the kids were at school. Right as I walked inside, I realized I forgot my phone. I mumbled under my breath, 'crap, gotta get my phone', and I did a U-turn to head back to the van to pick it up.  The old cart-passer-outer gentleman made a remark about “you young people can’t go anywhere without your phones”.  Now, first, I appreciated that he called me young, and most of the times I’d say, “Have a Nice Day” (Bon Jovi style), but this time I felt the need to explain. 

“Sir, I have a son with a chronic disease, and at any given time the school could call me for an emergency”.  I felt the need to dispel this “young people” stereotype.  I’d really rather be able to leave my phone behind and NOT panic.  If it weren’t for diabetes, I COULD leave it behind.  I really CAN survive without IMMEDIATELY responding to every text or voice mail.  I can wait until I have free time at home to respond to Facebook messages or play my Scrabble words. Unfortunately, that’s not my legacy.

See, once my son was diagnosed, my cell phone has to stay charged.  It HAS to be with me. If the battery is running low, I feel a great sense of urgency to get it on the charger.  If I forget it, I feel anxiety and borderline panic until it is back in my possession.  It’s very frustrating to be this dependent on a stupid gadget.  Even if a capable adult is caring for my kids, I still have to have it, because I never know when they will need Mommy!  The Captain of the Diabetes Ship has to be accessible at all times.

The refreshing part….last night I had dinner with 12 or 13 other D-parents.  I had my phone out in the center of the table so that I could see or hear it ring or text.  ALL of them did to!  They had it on their hips, in their pockets, on their laps, or on the table, too.  It was nice that I was with people who understand, speak my language, and never blinked about that phone on the table!  Oh, and two of us had to answer calls. L

So, next time you see someone who “won’t leave home without it”, don’t judge.  You never know his/her situation.  They may be losers who are addicted to technology, or they could be holding onto a lifeline to their child/children.

Rhonda

Beta's Last Stand

March 13, 2013

Beta’s Last Stand

I’m fightin’ here.  This time, not to bring a nasty blood sugar down, but to keep one up!  It’s equally frustrating and terrifying, but at the opposite end of the spectrum.  You see….high blood sugars cause damage over the long-term, have long-term complications and consequences.  And, each time I see one, I worry what damage is occurring.  But, low blood sugars can have immediate short-term complications:  Loss of consciousness, seizures, no fuel for the brain, etc.  You know?... fun stuff!  There’s more urgency to amend the situation.

Refresher for non-diabetic folks:  When a person develops Type One Diabetes, his or her body attacks the beta cells of the pancreas, which are responsible for making insulin, and kills them off.  For the first few months to 2 years, a newly diagnosed patient is considered in the “honeymoon phase” of the disease.  This means, all those antibodies aren’t done working yet.  They haven’t killed ALL the beta cells, just most.  The ones that remain continue to function.  Like a bench-warmer, they jump in the game sometimes.  Eventually, the autoimmune antibodies will win the war and kill them all off.  In the meantime, the battle ensues.

My twin son, Asa, was diagnosed 5 months after his twin brother.  Asa was diagnosed in August of 2012.  Since it’s only been 6 months, he’s still in his “honeymoon” phase of the disease, but with all THREE antibodies attacking his pancreas beta cells (most kids only have 1-2), he’s rapidly leaving this phase.  His insulin requirements are rising on a regular basis.

It seems the last 5-7 days Asa’s last remaining beta cells have decided to launch an offensive.  They are fighting for their lives, but like Custer and his troops, they are being and will be annihilated eventually.  They’re doomed.  (Oh, the thought of knowing something inside my baby’s body is DYING is just SO comforting and heart-warming). I have affectionately named Asa’s last five beta cells Larry, Moe, Curly, Alfalfa and Buckwheat.  The “boys” are cranking out insulin right now with all their might.  They don’t understand it’s an exercise in futility, and eventually the Anti-Islet Cell, GADA, and the Insulin Autoantibodies tribes will defeat them in this autoimmune siege at the Battle of Little Pancreas.

Larry, Moe, Curly, Alfalfa and Buckwheat have caused mayhem!  10 days ago, with average blood sugar numbers climbing, I did a basal test.  We marginally (MARGINALLY, only like 0.05 units per hour difference) changed Asa’s basal rates (that’s the insulin that infuses continually so that his organs have enough insulin to function).  We looked good the first two days after the change.  Then…BAM!!  Stumbling, dropping, falling off a bride with no bungee cord attached.  Usually, a 10-20g carbohydrate snack elevates the blood sugar back to a normal range.  With Buckwheat and company participating, nothing that usually works is working.  These inadequate bench warmers just really aren’t as good as the starting line-up.

March 11:

Time	Blood Sugar	Action/Comment
0830	48	15g free
0900	76	37g, covered with insulin
1000	41	15g free
1100	51	10g free
Noon	72	10g free, 40g covered
1300	45	15g free

 

NOW?  NOW you want to show up and work? For FIVE MONTHs, I’ve been working with very little help from these nincompoops, and now they want to wreak havoc on the routine!  They clearly are not following the rules. It’s been much of the same since.  These guys are acting like your dying relative who has that one last blast of energy before the end comes.  Everyone thinks, “He’s doing so well today” and the next day it’s over.

March 12, I dropped his day time basal rate to LESS than what it was before we changed it on March 7. 

Time	Blood Sugar	Action	Comments
Noon	46	30g free	That should fix it, right?
1230	47	15g free	Yeah, joke’s on me!
1300	50	20g free	Larry, SIT DOWN and let the experts work, please?!
1400	69	10g free	I’m starting to think I want the tribes to win!
1600	70	Early dinner with free carbs and insulin	Does that make me a traitor?
2000	104		Can I get some rest now?

 

 

If I were to feed myself as much as I’m pouring into the kid just to keep his blood sugar up, I’d have gained 10 pounds already!

So, March 13, we go to Six Flags for my other son’s birthday.  Since activity lowers blood sugar, I TURNED OFF his basal insulin.  OFF…getting NO insulin!  I raised his meal insulin-to-carb ratio to 1:15, which he was using in December!  He only got insulin for meals….and less so than usual. Here’s how his day went:

Time	Blood Sugar	Action	Comments
0900	51	15g free, 25 covered	This is what sleeping late does for you
1100	59	15g free	We’ve JUST entered the park
1200	77	20g free
1400	104	15g free, insulin, extended so only received partial insulin initially (later cancelled second portion of extended bolus)	Carby picnic lunch outside the park that could easily send non-diabetic into a coma!
1430	46	20g free	30 minutes after consuming over 100 carbs and only being treated for part of it!
1530	62	13g free
1700	71	10g free
1800	92	Dinner with free carbs and insulin	Wouldn’t you know, he didn’t finish his food?  Adding insult to injury here! I think he may be consorting with the enemy.  Wait, who’s the enemy again?
1900	55	20g free	Yes, I’m adding protein sources, too, all along.  It’s not only simple carbs!
2000	105		Basal insulin remains OFF
2100	36	20g free	REPEAT…THIRTY-SIX
2130	39	20g free	Sleeping, sweaty, didn’t change! This is the dumbest disease EVER!
2200	100		Exhale
2300	232		Resumed basal insulin
0200	325		WTF?  Correction insulin given.
0900 March 14, 2013	158		Back to normal

 

 

Yep, ALL day, the child had NO insulin except for meals, and apparently, even that was too much because Larry, Moe, Curly, Alfalfa and Buckwheat decided to join the party.  That’s all well and good, but if they could shoot off a flare, tag in, or fire a warning shot to let me know they’re helping, I’d really appreciate it.  I’d be much obliged.  Since they don’t believe in open and honest communication, I’m losing sleep, getting an ulcer from worry and wasting a hell of a lot of money on test strips!  Did you count those FOURTEEN checks in 14 hours?!  Furthermore, they’re TERRIBLE shots!  Clearly, wasting way too many bullets, misfiring, throwing punches in the dark with their eyes closed…  I feel like I’m an experienced Navy SEAL paired with inadequate and untrained Iraqi soldiers. They are more of a hindrance than help…a liability.

I’m not sure if it’s good news or bad news, but his blood sugars are more “normal” today.  I haven’t seen the death certificates.  I haven’t seen the tribes hang Larry, Moe, Curly, Buckwheat and Alfalfa’s heads in effigy.  I haven’t been presented with a Peace Treaty. But, I think the battle may be over.  I don’t want anything to “die” on my baby, but we can’t be duplicating each other’s efforts!  If you’re going to die inevitably, then die already! The way the past few days have been, I really feel like his Type One Disease Management IS being run by the Three Stooges!

Now, I’m left wondering.  Is this it?  Is the honeymoon over? Did the Betas fall, or have they only retreated?  Are they lying in wait, preparing to attack again when I least expect it? Only time will tell. In the meantime, I lie in wait.  I’ve got my gun cocked, loaded with chocolate milk, peanut butter crackers, Quick Sticks, Candy and Glucose tabs. I’m mixing adequate amounts of fats, proteins, simple carbohydrates and complex carbohydrates.  I’m dosing insulin using the “Mixing Bowl” philosophy (see prior blog).  And, I’m just waiting to hear “Mommy, I feel low!”

Rhonda

Mixing Bowl

March 9, 2013

Mixing Bowl

Lately, in my crazy, tired, stressed-out head, I’ve likened managing diabetes to making Grandma’s favorite cake recipe by scratch…with no recipe.  If you get everything right, your cake will turn out perfectly.  If you miss one ingredient, or put too much or too little of something, your cake will flop, overflow, or just not be quite right.

Those who don’t regularly deal with diabetes think we just check a blood sugar and give insulin.  What they don’t understand or know is that there are so many more ingredients to the process. Forgetting to consider one thing can flop our cake….and our ultimate goal (the perfect cake) is normoglycemia (normal blood sugar). 

So, here’s the recipe:

First , you check the blood sugar.  Hopefully it’s normal, but don’t hold your breath.  (I would’ve died from hypoxia a long time ago if I held my breath!) When deciding on how much insulin to put in the mixing bowl, you primarily have to consider the carbohydrates the child is consuming.  So, much like the flour and sugar are the primary ingredients in baking your cake, the current blood sugar and carbohydrates are the primary ingredients in dosing insulin.

But, if you fail to use or consider other smaller ingredients, your cake flops.  Baking powder, eggs, oil, milk, cocoa powder…..etc. Our “ingredients” are intrinsic and extrinsic.  Some we can control, others we cannot.

As diabetic parents, we have to consider the level of the blood sugar.  High ones require more insulin, low ones require less insulin. 

We have to adjust for extrinsic factors:

·         The TYPE of carbohydrates (Simple or complex, each of which impact the glucose level differently and at different times). 

·         The fat and protein content (High fat or protein meals make the glucose spike HOURS later!).

·         The child’s current and future activity level (Running around like a madman uses up all the circulating carbohydrates and causes a rapid glucose drop).

·          Growth.  Size of the Child. Hormones. 

·         The site of injection of insulin.

·          How Mom is holding her mouth and the color of her shirt.

·         What the child had the prior meal.

·         The amount of hairs left on Daddy’s head. 

You have to consider ALL of it.  Gather all that together, and throw it in the mixing bowl.

Then you stir the ingredients with your Math-VooDoo-Sorcery-Science spoon.  Slow down! Not too many stirs, not too few.  Pour the mixture into your cake pan (read:  diabetic child) and allow to cook in the oven.

What’s going on intrinsically in the “oven” that will impact the outcome?

·         Is that “oven” growing? 

·         Developing an illness? 

·         Is his brother irritating him?  Are they all irritating me?

·         Is now a HORRIBLE time for his Omnipod to fail? (If so, you can guarantee a failure and the dreaded screech of death!)

·         Having a “leftover” fat or protein spike from another meal?

·         Have a few remaining functioning beta cells today that decide NOW is a great time to fritz out?

·          Sheer stubbornness of diabetes to cooperate and adhere to logic and reason! (It's quite a stupid disease!)

Any and all of those intrinsic factors can make or break your cake.

In one to four hours, check your concoction.  Did it flop (go too low)?  Did it overflow and burn inside the oven (hyperglycemia) (leaving you yet another mess to clean!)?  Or, for one rare moment, was it just right? 

No two days are the same.  The same meal can impact him differently on different days due to those intrinsic and extrinsic factors.  Success and failure.  It’s baking a cake without a recipe.  One day the cake is great, the next day you wouldn’t feed it to your dog!

But, as T1D parents, we persevere.  We add more carbs, less carbs, less insulin, extend the insulin’s actions, we stir more, we stir less.  We try dancing, holding our mouths differently, wearing a different colored shirt, giving Daddy a toupee, and drinking wine…WHATEVER it takes to achieve the elusive goal of normoglycemia.  And some days, we actually get it right….THAT is our icing on the cake!

Rhonda