Random

Maybe a little Random

9/24/13

It’s been almost a month since I’ve blogged.  It’s not for any shortage of ideas, but more because life gets in the way.  Kids started school. Getting insulin levels adjusted for school routine. Boy turned 16. Endocrinology appointments. Pediatric appointments. Football practice and games.  Drivers’ Ed. Working. And, I’ve been focusing a lot of energy on fundraising for our 2013 JDRF Walk to Cure Diabetes Team.  On occasion, I take the chance to sleep.

It’s been 18 months now since Diabetes plopped his big fat butt in our lives uninvited. As I sit and think, I list the things that Diabetes has taught me in the past 18 months.

1.       I’ve learned not to brag.  As soon as I gloat, feel proud, or brag, Diabetes kicks back and reminds me who is boss.

2.       I’ve learned to be patient.  Yes, I’ve broken down in tears due to disappointment.  I’ve cried due to extreme fatigue and frustration. I’ve been downright pissed about having to buy stupid stuff that I’d never buy ordinarily.  Now, I try to just shake my head at the stupidity of this disease because getting upset and angry doesn’t change anything or take it away.

3.       I’ve learned to take nothing for granted.  Most notably, the lives of these two precious little boys. In another day and time, they’d be dead.  That’s a harsh and humbling thought.  Even when they’re driving me nuts, I’m so glad they’re alive and with their Mommy and Daddy. Too many parents can’t say the same thing.

4.       I’ve learned to think about one problem from multiple angles.  I’ve already done this in my nursing career, but you don’t realize how many different reasons for a crazy glucose level there could be.  Once you think you pinpoint the problem, it’s easier to correct.  Did I count the carbs accurately?  Was he active? What does his insulin pump look like?  Is he getting too much basal insulin?  Too much bolus insulin? Is he getting sick? Did he have a lot of fat or protein?  Not enough protein? Does this site absorb better?  Is the insulin good/bad?  Was I holding my mouth right?  Any of these can impact a blood sugar level.  Sometimes, nothing makes sense. 

5.       I’ll never stop learning, being surprised, or being baffled.

6.       My boys are WAY smarter than even I imagined, and they get it. I explain on their level (and maybe even above their level), and they go with it and seem to understand.

7.       I’ve learned to approach people with heart to ask an uncomfortable question…asking for money.  Frankly, I’m independent and stubborn to the point of it being a fault, and I’d rather chew nails than ask someone for money.  But, I’ve gotta do what I’ve gotta do.

As I mentioned, I’ve been spending a lot of time and energy fundraising for our Walk Team.  If I could just write a check myself, I’d do it, and give JDRF all the money they need to find a cure for my boys.  If the amount of tears I have cried (and other D-parents) could cure this disease, not only would my boys be cured but all other Type One Diabetics would, too!  If sheer willpower was strong enough to make those beta cells work again, T1D would be eradicated.   Unfortunately, that’s not enough.

When my boys were diagnosed in 2012, I literally felt like my heart was ripped open and the breath was kicked out of me.  It was humbling to know that I could not do my #1 Mommy job…fix the problem.  Once I caught my breath, I decided to do what I COULD do, which is help those who CAN fix this problem.  So, I’m working hard on thinking outside the box.  I’m asking a lot of people in a lot of different ways to donate to help JDRF find better treatments and a cure.  I’m finding ways that people “get something” back for their donations.  I’m hoping to have a hugely successful team and raise lots of money for JDRF.  Besides provide the best care I can for my boys, it’s all I can do to fix the problem.

So, if my perpetual asking, reminding, or discussing the topic is wearing on you…ask yourself…What Would You Do?  How would you respond if someone told you your baby had an incurable disease, but a cure is on the horizon?  And, know that the way it wears on you is only a fraction of the amount of wear and tear this disease wreaks on my boys’ bodies and this Mommy’s heart.

So, I’ll ask again.  Support our team today! 

www2.jdrf.org/goto/FuseA2Team

Rhonda

Newbie vs. Veteran

Newbie vs. Veteran

When I graduated nursing school at the ripe old age of 22, I was the young “newbie” of the group.  I had a good education, great mentors, and worked with a cool group of ladies, so I caught on fast.  Yet, I was always still in awe of those nurses who were “old” veterans.  More than once, I remember thinking “I can’t even imagine having been a nurse for 15…20…30 years.”  (I also remember thinking one nurse who had five children was insane, but that’s another blog entirely!) It sounded so far off to me.  I still had so much to learn, so much to experience, and so much growing to do. (Go Horned Frogs!)

16 years later (don’t do the math there; that’s not nice!), I’m no longer the young one… no longer the newbie.  I’m the “old” veteran now.  Been there, seen that, have the battle wounds (and stories) to prove it.  I’m the one they come to with questions, to get that hard stick, to hear the war stories. However, I'm not naive enough to believe I know it all.  There's still more to see, experience and learn. The newbies probably look at me and can’t imagine themselves “so old”.  They’ve got so much to learn, so much to experience, and so much growing to do.

I’ve been at the Diabetes game for 18 months now.  Part of my coping is to educate myself and read about others who are in my shoes (or worse shoes).  I read two blogs regularly: Death of a Pancreas by the incredibly witty and clever Joanne (www.deathofapancreas.com) and Our Diabetic Life by Meri (www.ourdiabeticlife.com).  

When I really want to feel sorry for myself for having two sons with Type One Diabetes, I remind myself of Meri who has three…and a recently deceased young husband.  I only have to serve as two pancreases and my husband is alive, kickin’ and sexy! Diabetes sucks and life's not fair, but I digress!

Recently while reading Meri’s blog, I read her post, “15”. (http://www.ourdiabeticlife.com/2013/08/15.html)

Meri did a beautiful job showing how her oldest diabetic son (who was diagnosed in infancy) has grown and thrived 15 years with Diabetes.   He has refused to let Diabetes define him or bring him down. FIFTEEN YEARS.  Fifteen.  Fifteen years she’s dealt with this craptastic disease, had two more added to her plate, then lost her husband.  Fifteen.

As I did in nursing school, I stand in awe at this “old veteran”.  Fifteen.  We’re barely 15 MONTHS into this crap, and I can’t imagine fifteen YEARS.  It makes me realize how much I have NOT experienced.  I still have so much to learn, so much to experience, and so much growing to do.  Fortunately, like my early mentors, there is a great D-parent community out there to help me be a successful pancreas until my boys can do it on their own (or until a cure is found).  There is tons of research and information to help me make the best pancreatic decisions. And, like Meri, I hope I am instilling in my sons that Diabetes is part of them but does not define them.  They are beautiful, witty, smart, and funny.  They behave at school and make straight A’s.  I refuse to let Diabetes interfere with them having a childhood or allow it to bring them down.  Like Meri’s boys, they are thriving. Also, I'm sure, despite her veteran status, Meri knows there's still so much to learn and experience, but I know she has great war stories!

As I couldn’t imagine touting my fifteen years of experience when I was a mere 22, I now can’t imagine saying my family has been dealing with Diabetes for 15 years.  20 years.  Or, as in the case of my father-in-law….50 years.  It’s a ridiculous thought to me. And, hopefully, a cure is on the horizon and I will be able to say, “They were diagnosed 15 years ago, but they are cured now.”  In the meantime, I’ll embrace my “newbie” status again (at least I’m young at something), and learn, experience and grow.

Rhonda

Off Switch

August 22, 2013

Off Switch

I’ve noticed that those who are completely physically exhausted or below average intelligence can fall asleep as soon as their head hits the pillow.  They don’t have the energy or gumption to think too much about sleep. I really think I’m one of those (I’ll let you decide which one), but apparently I’m not.  I’m one of those who lies there for awhile going over today, thinking about tomorrow, thinking about the past, and optimally needing quiet in order to catch those elusive Zzzs.  When I wake in the middle of the night, sometimes I’m stuck awake.  This is how the other night went, and this is typical.

Asleep around 1130. Awakened by full bladder at 0345.

I don’t want to get up, but I can’t ignore it.  Better go now.  I don’t wanna move.  Get up, fatty, and go pee and check on the boys.

I use the restroom and then check on the boys.  Sugars are good.  I crawl back in bed hoping to find sweet slumber right away.  Not so much.  Someone switched the brain ON.

Oh, great blog idea.  Newbie vs. veteran.  Oh, I could say this.  Oh, I could say that.  I’m afraid to fall asleep and forget these genius ideas.  Let me keep repeating them to commit them to memory.  Wait, that’s really clever!  Say that!

What’s that noise that I can hear through my ear plugs?  Oh, just Jerry mildly snoring again.  I’ll jerk the pillow to readjust his head and airway.   Jerk.  Resumption of quiet.

STOP THINKING!  Time to count sheep.  1, 2, 3….10, 11…Wait, why is that sheep pink?

I wonder if their sugars will be ok until breakfast.  Maybe I should set the alarm to check them again.

I need to stop by the store today.  I’m running low on my sodas. Speaking of, maybe I should go to Wal-Mart and get a new plastic storage drawer for the Diabetes stuff.  That other one is broken.  Wait, maybe I should just rearrange it all, conserve some space.  Yeah, that’s a good idea.  I’ll do that. 

Crap, he’s snoring again.  Head readjusted.

Now, my mind HAS to shut up so I can fall back asleep.  The alarm is going off in 2 hours. 

Count backwards from 100 so you’re mind has only one thing to focus on.  100, 99, 98….67, 66.  OH, I wonder if Richie Sambora will be back with Bon Jovi in the fall.  I wonder if he’s tweeted about it.  I really wish they’d resolve their issues because I miss Richie.  CRAP…I was counting!  Where did I leave off.  Of course….70, 69, 68….3, 2, 1.  Well, that didn’t work.

I wonder what will happen on the next Breaking Bad.  I can’t wait.  Tread Lightly….

The closer it gets to alarm time, the harder it is to fall asleep. 

GO TO SLEEP!  Try the sheep again.  1, 2, 3…..18, 19,20…wait, WHY are the sheep jumping the fence when there’s a gate right there?  That’s just dumb.

What else can I do to raise funds for our team?  Am I bothering people with my ideas?  Oh, I can do this.  I need to buy this for the party. Oh, that would be cool, too!

Snoring again?  I wonder if he’d notice if I put my fingers in his nostrils.  Must be nice to be asleep.

What should I do to entertain the boys today?  Museum?  Park?  What do I need to pack for that?  I really should clean out their closets, but I think we’ll hit the park for a little bit. Hey, remember that time I spun the kids so fast on the merry-go-round that I made that kid puke?!  That was sad but funny, too!

Maybe I can squeeze a nap in, because if I don’t, I’ll be worthless to my husband and family by 7pm.

Hmm..it’s been almost 2 hours.  I wonder what their sugars are now.  Speaking of, I need to remember to tell the school nurse This….I really hope she’ll listen to me about pre-dosing their insulin before lunch.  I hope I don’t have to spend all week up there coaching her just to keep my boys alive!  I need her to do it right because once school starts, that’s 1/3 of their day, which is 1/3 of their A1C…and if the A1C is squirrely..they look at ME!  I freakin’ hate group work!

STOP IT.  Count again.

I start drifting off.  We are 1hr and 15 mins before the alarm goes off. 

Snap awake.  Holy, cow!  I was drifting off.  Cool.  Let’s try again.

This repeats twice more before I fall completely asleep.

The alarm rudely goes off one hour later. 

I don’t want to get up.  I need to pee.  What are their sugars?  Are they ok?

I get up, blood-shot eyes, and face the day.  I decide over the course of the day that perhaps I should place a notepad by the bed.  Then, when I wake up with a rare stroke of genius, I can jot down the ideas, and hopefully, relax my mind. 

Or, maybe when a cure for diabetes is found, my brain will develop an OFF switch!

Rhonda

Stick Shift

Stick Shift

 8/7/13

When I got my Drivers’ Learning Permit at age 15, my dad taught me to drive a “stick shift”, a manual transmission.  Several hard stops, stalled engines, and bouts of whiplash later, I got the hang of it. That’s how I learned.  Learn the hard way first, then the “easy” way is so much easier and more comfortable! However, driving an automatic is so much easier, and it’s what I prefer.  Despite learning to shift a manual transmission, I chose an automatic car.  The one brief time I had an “stick shift” car, I HATED it, and quickly reverted back to an automatic. But, being able to drive a manual transmission vehicle is a skill I cherish and one that has served me well in this life.  Frankly, driving a stick shift is practically impossible with kids is tow as I typically have one hand on the wheel, and the other hand adjusting the radio, handling trash, air-drumming to Bon Jovi, or refereeing a fight, but I digress.  I will always choose an automatic transmission.

When my boys were born, their pancreases were automatic.  Carbohydrates in, insulin out.  Much like driving that automatic transmission vehicle, there was little thought involved in the process.  We aimed to put healthy stuff in, good insulin out. Their “engines” adjusted to all extrinsic factors that impact processing carbohydrates.  Activity, diet, age, growth, heat, etc.  At age 7, however, their automatic “transmissions” broke, and we had to revert to manual.  My dad may have taught me to operate a manual transmission, but nobody taught me how to be a manual pancreas.  And, much like learning to drive that stick shift, there have been some bumps, hard stops, and bouts of whiplash in learning to be a manual pancreas…times two.  The best mechanic can’t overhaul these transmissions!

Now I press the clutch (calculate insulin), and the amount I have to press varies over the course of the day and increases over time.  It’s up to me to figure out how much and when an adjustment is needed. Then, I add the gas (carbohydrates, protein & fat).  Too much makes their engine rev to a dangerous level (hyperglycemia), and too little makes them stall out (hypoglycemia).  When the combo of gas and clutch is just right, we can switch gears and move about our day!  As with any engine, other factors can impact how that car drives.  Heat, type of gas (type and quality of diet), mileage (age of the child and length of disease), changing the oil (new pumps, new sites, new insulin vials), heavy usage (exercise), and low fluids (dehydration).  Despite having the right gas and clutch combo, any of these can cause the engine to rev or stall.  My job is to figure out which one is the culprit. 

I’ve just completed two “first years” of diabetes.  Being a nurse, I had a basic foundational knowledge of Type One Diabetes, but that was it.  Being a healthcare provider did not prepare me for the daily ins and outs of being a pancreas to two little growing active boys.  It didn’t prepare me for the crippling worry that accompanies this disease.  It didn’t prepare me for the sleep deprivation, which is Diabetes’ parental torture tactic.  Nursing school didn’t prepare me for the ignorant remarks that well-meaning others say.  Being a nurse didn’t prevent my mommy heart from breaking in two when I heard the words, “He has Diabetes”….twice. 

And, it didn’t prepare me to forever be on the stick shift.

Now, I am stuck on this “stick shift”.  I stick.  I stick fingers.  I stick toes.  I stick tummies, arms, and legs.  I stick pumps on.  I stick in the morning, afternoon, evening, and middle of the night.  I stick in daylight and dark. I stick awake and half-asleep.  I stick.  And, until a cure is found, I’ll be stuck on the stick shift, manually shifting their transmissions, waiting, hoping, and praying that someday, they can go back to automatic!  I’ve learned and semi-mastered the hard manual way; can we go back to the easy automatic way now?  Please?

Help us support JDRF in finding a cure today!

www2.jdrf.org/goto/FuseA2Team

Rhonda

Second First Diaversary, August 3

Second First Diaversary, August 3

In February of 2012, my youngest twin son, Aiden, was diagnosed with Type One Diabetes.  Besides stabilizing and caring for him, our next immediate concern was for his identical twin brother, Asa.  If they’re genetically the same person, isn’t he prone to develop this disease?  We were given some low statistics for Asa to also develop T1D. Upon further research, I learned he had a 10% chance of developing T1D within the first year of Aiden’s diagnosis and a 50% chance of developing it over the course of his lifetime.  We crossed our fingers.

(See Aiden's First Diaversary Blog : http://twotoosweet.blogspot.com/2013/02/aidens-one-year-diaversary.html)

From the time Aiden was diagnosed, we periodically checked his brothers’ blood sugars at random times. Asa ALWAYS resisted, moaned, groaned, whined.  He definitely was not the "tough" twin, way more tender! We’d tease him sometimes and pretend we thought he was Aiden when it was shot time!  He quickly confirmed his identity!  “I’m not Aiden, I’m Asa!  I don’t have Diabetes!”

So, on Friday August 3, 2012, I found it quite odd that Asa willingly wanted to check his sugar when we were checking Aiden for a suspected “low”.  He’d NEVER voluntarily held his hand out to be checked before.

After being knocked to my knees after Aiden’s diagnosis, I felt like my damaged heart was mending and my wobbly legs were ready to stand up again.  When his blood sugar read 200+ two hours after his lunch, I felt like the rug was pulled out from under me again!  That wound in my heart was reopened, and I was back on my knees again!

Since it was a Friday, we followed him over the weekend.  Besides the morning glucose level, every reading was over 200.  To that point, Asa had failed to show any other symptoms like Aiden had.  However, his weight was down slightly.  I mourned all weekend long, and got him to the doctor on Monday afternoon.  Hospitalized Monday night.  Home Tuesday night to adjust to another new normal.  Double the work, quadruple the worry.  So much for that 10% chance!  We caught him incredibly early.  If not for that random check, he could have been so much sicker!

Since Asa had watched Aiden for the previous 5 months, he took it all in stride.  He knew what to expect, and knew those shots weren’t too bad (could be better, could be worse).  Through this second first year, I’ve learned so much more, and have a few funny mishaps that can only be had if one is dealing with identical people with the same chronic disease. He has someone who understands him on every level, and they tackle everything together now, including Diabetes!

Asa has gained strength and resolve in this past year.  He’s progressed from being terribly tearful and frightened of his quarterly venipunctures to volunteering to go first (but Mommy still has to hold him and count it out until it’s over).  He’s learning as much as possible about his disease and how to manage it.  He worries more about Aiden, I think, than he does himself.  And, he’s still continues to grow and thrive as a little boy.  He’s a straight-A student, good school behavior, good reader, good at video games, fights with his brothers , loves his dogs, and has one of the silliest senses of humor in this house!  

(They call me…the Pizza Cutter)!

I am so glad medical research has advanced so that there are reasonable treatments for this craptastic disease, and with more research and support, hopefully a cure will come in my boys’ lifetimes!  Because… I don’t know how I could have survived losing not one, but TWO babies to this stupid disease, and I don’t know how I could live without Asa’s silly little heart!  And, I don't want to live to see the day this disease takes either one of them, even if I'm 90!

So, today, we’re going to celebrate.  We’re going to celebrate that Asa has not been re-hospitalized with complications. We’re going to celebrate that he has been so big and brave in accepting his diagnosis. We’re going to celebrate how much we’ve learned.  We’re going to celebrate that it’s not worse (although it could be so much better).  We’re going to celebrate that we live in a day and time where treatment is available and a cure is on the horizon. And, through the tears, we’re going to celebrate that my baby is still alive to live a full life! 

I think we’ll celebrate with some ice cream!

You can help us find a cure today:

www2.jdrf.org/goto/FuseA2Team

Rhonda

Joke's On Me!

Joke’s On Me

For the lucky folks who don’t have to deal with Type One Diabetes or live their lives as a pancreas…a little background:

Diabetics get bolus insulin, which is the amount of insulin given at one time to cover the carbohydrates in their meal.  They also get basal insulin, which is the small amount of insulin that is constantly given to provide insulin for their organs to function.  It can come in the form of 1-2 shots of a very long-acting insulin or tiny amounts each hour on their insulin pumps.

From time to time, for various reasons (such as growth, progression of the disease, the color of the patient’s underwear, and/or stupidity), the blood glucose numbers will start spiking at random times or rising for no understood reason, which necessitates a “basal test” to make sure the person is getting enough of that “underlying” basal insulin.

A night-time basal test involves giving the child their meal, then nothing else afterwards.  They are not supposed to eat or drink until breakfast so we can see how their bodies respond.  I have to do this every 4-6 weeks at least.  Trust me, I’m constantly analyzing numbers to see if they need more or less bolus or basal insulin at any given time.

_________________________________________________________________________________

So, it’s been a few weeks, and I have noticed each twin boy keeps spiking his blood sugars during the night at random times for no understood reason.  I opted to do a basal test last night.  I really think I need to call it something else, because they minute Mr. Diabetes hears “basal test”, he jumps into the front row for the show!  It’s full scale mockery from that moment on!

My boys’ bodies have a knack for screwing around for days at a time, then correct themselves or go/stay ridiculously low when I do a basal test, thus giving me inconclusive results. Last night was certainly the worst showing ever!

Twin A	Twin B
5pm:  235 (Fed, SWAG’d carbs, dosed). I guess we got a small post-pizza spike.	5pm:  155 (Fed, SWAG’d carbs, dosed). Take THAT, Pizza!
6:45 pm: 53 (given 20 g of carbs).  Really?  Already?	6:30 pm:  88 and “feeling low” Bunch of bull crap. That’s what I get for getting sassy!
7:30 pm (2hrs after meal): 101	7:30 pm (2hrs after meal): 69 (20g given)
8:00 pm : 73 (given 13g milk)
8:30 pm: 81 (given 5g more before bed)	8:30 pm: 63 (15g given)
10:00 pm: 57 (given 15g)	10:00 pm: 83
11:45 pm: 78 (given 15g)	11:45 pm: 64 (15g given) Feel like I’m on a roller coaster!
12:30 am: 118  (exhale).  Now, bring the spikes on, Mr. Diabetes!	12:30 am: 126 (exhale). Now I can actually sleep for a bit.
3:00 am:  105. Survivable.  No spike, naturally.	03:00 am: 87. Cool. No spike here either.
06:00 am: 70 (given 15g)	06:00 am: 86 (5g given since we’re sleeping in).  Well, someone is sleeping anyways!

Before any T1D parents launch off, let me say:

1.        I KNOW that, technically, once I have to correct a low or high, the basal test is over and has to be redone at another point in time.  But, I have had luck in the past where I correct a post-dinner, post-activity low and can carry on with the test.  Also, now I’m just morbidly curious and worried, so I MUST check them (coincidentally) at the same basal test intervals.  And, obviously, I have ALL the spare time in the world and NO need for sleep, so I can just stop and restart on a whim!  No biggie!

2.       Yes, some of the carb corrections DID have protein in them!  I was out of my “staple” Chocolate Milk, but we had regular milk.  They weren’t all quick carbs.

3.       And, yes, I fully understand that Diabetes is Stupid!  No need to remind me!

I just shake my head.  And, as I think over the course of yesterday, I realize I had too many strikes against me for this test to be successful.  Mr. Diabetes held all these cards in his hand and slapped his knee as he laughed at me from his front row seat!  He was holding a Royal Straight.

Ten of Spades:  I told myself and the boys, “We’re going to do a basal test tonight”.  It always makes them SO happy!  *(insert mandatory moans and groans here)*  I tried to whisper so Mr. Diabetes couldn’t hear me, but he obviously heard!

Jack of Spades: First, my Dad treated the kids to Cici’s Pizza for lunch yesterday.  My Diabetic twins can eat their birth weight in pizza, which subsequently wreaks havoc on their blood sugars.  But, I was with them, suffering through the Hell that is Cici’s, dosing them all along the way.  They had insulin up front and extended insulin to cover the later glucose spike that occurs when pizza’s crap is metabolized.

Queen of Spades: Following the high quality lunch, I took the boys to the Trampoline Park.  Two hours of practically non-stop activity.  We checked while there and they are in the 200s, but not as terrible as it usually is after pizza.  It came down with each jump! Besides, I was really waiting for that 4-6 hour-post-pizza glucose spike.  I had my dukes up!

King of Spades: Twin B’s pod failed on the way home, so I had to change it promptly and reschedule that extended bolus.  Twin A’s pod was changed after the extended bolus since it was due to be changed.  Each boy got 0.5-1 unit extra with pod change to prevent/minimize the post-pod-change high. Apparently, the new sites were really absorbent!

Ace of Spades:  I made a fantastic dinner.  Meatloaf, Mashed Potatoes, Wheat Rolls, Salad, and Fruit.  So, let me tell you, when I say “fantastic”, that means my kids won’t eat it.  The better it is, the less likely they are to eat it.  I made sure they had stuff to eat, because with Diabetes in the room, I can’t say, “You eat what I cook or you don’t eat.”  Doesn’t really work that way with this disease.   So, they did not eat nearly as much as usual, and they certainly did not consume enough protein.  Naturally. 

They followed their low protein meal by a rare playtime outside where they actually played nicely, didn’t fight, and didn’t run in every 5 minutes!  (I KNOW!!!  Call the News!)  Hide-and-Seek was the order of the evening, which means they ran off any and all carbs they’d just consumed.  I’m pretty sure Mr. Diabetes whispered subliminal messages to them to encourage such abnormal behavior, thus further complicating my basal testing plans!

Needless to say, I’m the JOKER here.  I just shake my head and laugh, or else I’ll cry.  And, I try to see what went wrong.  I learned a few lessons after this fiasco:

1.        Mr. Diabetes has Super-Sonic hearing and a wicked sense of humor.

2.       Apparently, two hours at the Trampoline Park obliterates any post-pizza glucose spike. Too bad I can’t afford to do that every time.

3.       Apparently, my boys are NOT kids who belatedly spike their sugars after heavy exercise.

4.       Maybe I should cook a less “fantastic” meal if I plan to do a basal test.

5.       There WAS Chocolate Milk in the fridge…hidden behind two jugs of juice…I’ve since discovered!  DOH!

6.       As DH said, the only thing consistent about Type One Diabetes is that it’s inconsistent!

7.       I’ll watch the middle-of-the-night spikes for a few more days then try to repeat again.  Any suggestions on what I should call it?

I folded on this hand Mr. Diabetes, but I’m not out of chips!  I will win eventually!

Rhonda

Enemy Torture Tactics

As a family, we’ve been dealing with Type One Diabetes for over 16 months now.  Some things have gotten easier, some things have remained just as crappy as day one.  I’m the Pilot of this craft, and I have a great co-pilot, but it’s a tough job!  Most just don’t understand all it entails until they live the life…even if just for a day or two. 

In February, just prior to Aiden’s One Year “Diaversary”, I was sort of having a hard time.  Everything diabetes was getting me down.  Mostly, I hate it for Aiden, and it’s not fair to him….and there’s nothing I can do to change it.  All I can do is continue to run the marathon, and hope the finish line shows up eventually.  We’re now a couple of weeks away from Asa’s One Year “Diaversary”, and I’m back to having a hard time again.  As I ponder and brew it all over in my head, I’ve decided it’s because Type One Diabetes is the work of the Devil.  T1D is the enemy, and he uses unfair tactics in this war!

One known and primary tactic of enemy forces is sleep deprivation; Type One Diabetes is my enemy and his primary torture tactic is sleep deprivation.  Let’s take this week for example.

Sunday:  I worked until 0100, and when I work partial shifts, I always check the boys when I get home.  Exhausted, low and behold, the Devil made sure one boy was low when I arrived (50, I think).  So, I have to give the sleeping child carbs…and wait.  Of course, the one who was low is the one who is also very slow to rise.  Thirty minutes later, 72.  Barely above normal.  More carbs, wait again.  By the time his sugar was good enough to go to sleep, it was 0230.  Alarm sounded at 0630.  T1D gets the last laugh!

Monday:  No rest for the weary.  I take one kid to Golf Camp and run errands while he’s occupied…taking Diabetes with me wherever I go.  Once I get home and get all settled, I decide I’ll take a little nap while the boys watch a movie. Literally, as soon as I start to drift off…..*tap tap tap*  “Mommy, I feel  low!”  No kidding.  The Devil’s handiwork again.  Joke’s on me thinking I could get some sleep.

Evening and middle of the night numbers have been screwy, so it’s time, naturally, to do a basal test.  I have to do one every 4 to 6 weeks it seems.  I’m constantly working to keep insulin rates ideal in order to manage their blood sugars as close to normal as possible and in order to minimize complication as they grow.  It feels like an exercise in futility. Mostly one boy needs it this time, but if I’m up doing one, they’re both getting it.  Doesn’t matter to them; they sleep through it all. They’re tortured enough just having this disease, my torture is worry, fear, and sleep deprivation. (For those who don’t know, when I do a basal test, I basically have to get up or stay up through the night to check their sugars every 2-3 hours-- from 6pm to 6am-- to make sure they are getting the proper amount of overnight insulin.)

10pm bedtime.  Up at midnight to check sugars.  Stuck awake until 0230.  Go ahead and check sugars then.  About to fall asleep when the kicking Preying Mantis (also known as Jace) joins us in bed.  Up at 4.  4:30.  5.  5:30.  Check sugars at 6.  Guess what?  LOW.  Did you count the lack of hours of sleep there?  Yeah, me neither.  I estimated about 4 broken hours. I've always been the kind of chick who needs lots of sleep, so this is the cruelest torture!  Does wonders for my attitude!

Tuesday:  Up at 0600.  Take kid to Golf Camp and run errands, dragging T1D along, while kid is at camp. Attempt to nap again before lunch for an hour or so.  10 minutes in…*tap tap tap*  “I feel low”.  Devil’s play.  So, I get to suck it up all day with burning eyes.  10pm bedtime.  Up at midnight to recheck the low sugar of the boy who was high the night before!  He’s low.  Recheck at 0100.  Recheck at 0300.  Up at 0600. 

Wednesday:  Took one hour nap, at the beginning of which I was awakened to “Did you bolus me for my side item?”  I really think an alarm sounds when I’m dozing off. (Same as when I pick up the phone or sit on the commode, but that's another blog!) The Devil plants the seed in their heads, “Alright boys…go wake her up!”

To make matters even sweeter, I get to carry on during the day like I didn’t just lose SO much sleep the night before…..nights in a row now. NOBODY cares!  The dogs don’t care.  The kids don’t care.  They still want breakfast, lunch and entertainment.  The laundry doesn’t care.  The cooking doesn’t care.  Get the picture here?  I still have to be chef, chauffeur, cruise director, maid, launderer, nurse, wife, mother, and referee…on top of being two pancreases!  With all that being said, I get down on myself to boot.  My perfectionist attitude doesn’t like not being able to be the best wife, a great mother, a good friend….because my energy is spent being two pancreases, causing other important areas of my life to fall.

Type One Diabetes is a formidable foe.  He’s got great torturous moves, like the Devil.  T1D leaves me filled with worry.  I’m sometimes paralyzed by fear.  My hands are tied as to the amount and hours I can work….needing more money but not able to obtain it.  My hands are tied as to with whom I can leave my children.  Any “basic” event and task takes foresight, thought and planning that isn’t ordinarily necessary (and I’m sure is taken for granted by the non-T1D family). I’m left looking, daily, at this unsolvable puzzle of numbers, trying to make sense of the nonsensical.  My foe has “rules” by which he doesn’t play; there’s no Geneva Convention here.  The gloves are off!  And, I’m left knowing this invisible beast inhabits the bodies of my babies, and until there’s a cure, I can do nothing to make it go away.  All I can do is hit it with my best shot(s) *pun intended*.

So, I’m wondering at what point am I supposed to crack?  What am I being coerced to do? Why are my boys, me, my family being punished?  I’m sure this is a violation of my human rights, but who do I hold accountable?  When will that finish line be an actual finish line instead of a mirage?  When will this Devil leave us alone?

I’m hoping for sleep tonight, but I’m not holding my breath.  You can bet your sweet behind that one boy will be too sweet, and the other won’t be sweet enough! (And, they’re likely to switch beds and roles in the night!)  I’m looking forward to a weekend getaway when I know my co-pilot will take the reins and pancreas-it-up for me.  I’m looking forward to getting a soul dope infusion, aka…Bon Jovi and time with girls!  And, I’m looking forward to a cure!

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Rhonda