Kick Start My Heart

June 14, 2013

Scared to the Core

We took our boys on vacation this week to Galveston. I prepared for the trip for a week.  Packing, planning, preparing, laundry and shopping.  In addition to the boys’ typical D-bag, I packed an additional Vacation Diabetes Bag filled with entire boxes of any and every supply I could think we would need.  A month’s worth of insulin was in the cooler. I was ready to make Diabetes cooperate during this vacation.

Overall, we did well.  Their Omnipods fared well through kite flying, wave riding, crab hunting, sandcastle building, and swimming.  We managed their sugars despite restaurant dining, soda pop drinking, and S’Mores.  A few highs, few lows.  I checked the boys before I fell asleep, and we all slept well in our comfortable beach house.  We had the upper hand on Mr. Diabetes. 

So, that’s the background.  As I’ve mentioned before, once you have a diabetic child, you instantly go back to a form of “infancy”.  As most mothers, when my babies were newborns, the first time they slept through the night, I was panicked.  I rushed to their bedsides to make sure they were still breathing.

When a child is diagnosed with diabetes, that gut-wrenching heart-stopping fear is back.  People die of hypoglycemia!  When my boys sleep later than expected, I run to their bedsides.  Every.  Time. Give them a *poke poke*.  If they are responsive and appropriate, we can all rest again.  So far, one *poke poke* has been all it has taken to rouse them and restart my heart.

Yesterday, I woke up after sleeping some 7 hours.  This is a RARE treat for me! I did not hear my boys awake yet.  I sprang from the bed and ran to their room in the beach house. Aiden lay sprawled on the full-sized bed. The blanket was draped over his body, covering his chest, so I couldn’t see if it was rising and falling.  He looked pale, and his eye was half open.  He did NOT look okay.  I gave him the *poke poke*.  No response.  In a split instant second, so many thoughts passed through my head.

Scream for Jerry.  Get the Glucagon.  What’s his sugar? Is he breathing?  Where is the closest hospital?  Did he tank in the night? Oh my God, this can’t be happening. 

My rational thought took over and I shook him as I loudly called him name, “AIDEN!”

He stirred and indignantly said, “What?!” 

I had to kick start my heart!

After I gave myself a precordial thump to restart my heart, I said, “Are you okay?”

“Yes, Mommy.  Why are you asking me that?”  Exhale.  I was probably paler than him. 

“Nothing baby.  Go back to sleep.”

I went and lay back in my bed, trying to slow my heart to a normal rate and rhythm. By some miracle of fate, I fell back asleep.  After that, I then knew he was just passed out tired from all the vacation fun.  His eye was half-open because he has giant eyeballs like his Daddy, and that’s just the creepy way their eyes look sometimes. 

When Aiden got up and checked his sugar, he was 186. 

Stupid Diabetes.  Took yet another year off my life!  Stupid Diabetes.  Reminded me again who is Boss and what he is capable of.

Unless you live this life, you just can’t fully comprehend the fear. It is paralyzing.

There HAS to be a cure one day.  I don’t know how many times I can stop and restart my heart before it just won’t restart again. 

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Rhonda

Livin' on a Prayer

Shame on me!  It's been almost a month since I blogged.  What have my readers done in my absence?

To be honest, when the mini-stroke of genius hit that triggered my "Wanted Dead or Alive" lyric change (on Diabetes Blog Challenge Week), the wheels kept turning and churned this one out, too.  I just held onto as I didn't think it was as good as "Wanted".

Regardless, Bon Jovi is coming back to Dallas the day before my birthday in October.  (How old, you ask?  I'm hangin' on to 35 for awhile.  Oh, I don't look that old?!  Ah, shucks, thanks!).  I digress.  Anyways, that is also 5 days before my twins' 9th birthday.  They have been dying to go see Bon Jovi with Mommy, and they were totally excited for (but jealous of) big brother Jace who got to go prior to his birthday in the Spring.  I landed 3 tickets, so I'm going to go out on a limb, take the boys on a school night (*gasp*), and hope that Diabetes cooperates so my boys can have the experience of a lifetime....seeing live what Mommy has played for them since birth, seeing live the guys they've only heard and seen on TV.  I've got four months to convince Mr. Diabetes to play along for 3 hours, but I don't trust him.  He's already proven to be a traitor!

(Oh, and it's a surprise, so shhhh!  If you say anything around them, I'm going to treat you like you belong in the looney bin!)

So, since Jovi's on the mind, here's my other "artistry".  Enjoy!

Living On a Prayer

Once upon a time, now every day it’s so

Mommy used to sleep through the night

Pancreases went on strike

Her twins’ crappy luck, it’s tough.  So tough.

Daddy works the Railroad all day

Working for the meds

He brings home his pay for love. For love.

She says, “We’ve got to hold them and give them a shot

Because it makes a difference if we treat it or not

We’re in this together and that’s a lot for love

We give lots of shots

Oh, we’re always there, living on a prayer

Take their hands, they’ll make it I swear

Living on a prayer

Mommy has her stomach in knots

Barely holding on when she used to feel so tough.  It’s tough.

She wants Diabetes to go away

When she cries in the night, Daddy says, “Baby, it’s okay”

We need to find a cure, ready or not,

Because it makes all the difference if they make it or not

We’ve got each other, and that’s a lot for love

We give lots of shots

We want a cure, Livin’ on a Prayer

Hold their hands, they’ll make it I swear

Livin’ on a Prayer

We’ve got to hold on

Ready or not

We Walk for a Cure

Because it’s all that we got

We want a cure, Livin’ on a Prayer

Hold their hands, they’ll make it I swear

Livin’ on a Prayer

Rhonda

Diabetes Blog Challenge: Freaky Friday

Just like in the movie, today we’re doing a swap. If you could switch chronic diseases, which one would you choose to deal with instead of diabetes? And while we’re considering other chronic conditions, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions?

Freaky Friday:

If I had to choose a chronic disease for my boys instead of Diabetes, I guess I'd choose Eczema.  I don't have it, but I know a few who do.  It's unsightly at times.  It may itch.  You gotta buy some creams and make sure not to eat allergen-triggering foods.  No disrespect, but SO WHAT!  I'll take it!  At least it can't kill you if you mess up!  

But, the ultimate Freaky Friday for me would be to trade places with my sons.  I'd take their disease and bear that cross myself if I could.  If it meant they'd never have to check their sugars or get a shot, I'd take Diabetes from them!  I'd give them my pancreas if it were possible. Unfortunately, I can't.  

It's their cross to bear, and since I can't take it away or fix it, I have to nurture them now, and teach them to manage their disease as best as possible when they're grown.

Rhonda

Diabetes Challenge: (Art) Wanted Dead or Alive (Diabetes Style)

Diabetes Blog Challenge:  Diabetes Art

Saturday Challenge:

This year Diabetes Art moves up from the Wildcard choices as we all channel our creativity with art in the broadest sense. Do some “traditional” art like drawing, painting, collage or any other craft you enjoy. Or look to the literary arts and perhaps write a d-poem or share and discuss a favorite quote. Groove to some musical arts by sharing a song that inspires you diabetes-wise, reworking some song lyrics with a d-twist, or even writing your own song. Don’t forget dramatic arts too, perhaps you can create a diabetes reality show or play. These are just a starting point today – there are no right or wrong ways to get creative!

I’m going a bit out of order here, but I have to act on my little strokes of genius when they strike.

WANTED DEAD OR ALIVE (Diabetes Style)

It’s never the same

Only the days will change

Every day

It seems I’m dosing away

Another day

Where the numbers just won’t hold

I try all night to fight that low

I’m a D-Mom

Got Glucose on my mind

I’m wanted (needed)

Dead or alive

Sometimes I sleep, Sometimes it’s not for days

The people I meet

Don’t know what’s right to say

Sometimes I tell the day

By the carbs that I treat

Sometimes when I’m alone

All I do is think

I’m a D-Mom

Got Insulin on my mind

I’m wanted (needed)

Dead or alive

I Walk for the Cure

Meters and Snacks are on my back

Appointments we keep

There’s just no turning back

I’ve tried everything

And sometimes we hit a wall

Given a million shots

And I’ve rocked them all

I’m a D-Mom

Got A1C on my mind

I’m wanted (needed)

Dead or alive

I’m a D-Mom

I’ve got Science on my side

And I’m wanted

(Needed)

Dead or Alive

Not always right

Dead or Alive

I still try

(I still try)

Until I'm Dead ... or Alive

Now, If I could get Jon and Richie to sing it…

Rhonda

Diabetes Blog Challenge, Day #2 Wildcard: Dream Device

Diabetes Blog Day #2

Tuesday May 14, 2013

Wildcard:  Dream Device

It would be so easy to say, “A New Pancreas”.  I mean, really?  Can’t they make a mechanical pancreas like they make a mechanical heart?  But, I’ll get a bit more creative.

My dream device would be a Continuous Glucose Monitor (CGM)-like device that would tell us what the glucose not only currently looks like, but will look like in the next few hours after a meal.  My Crystal Ball Glucose Monitor! It would have to be a “smart device” where we plug in what the meal was, what amount of carbs were, what amount of insulin was given.  Then, it could tell me over the course of the next 4-8 hours what the circulating glucose level would be.  That way, I could know when to give more insulin and how much.  With that device, I could know whether I could sleep through the 0200 am check or get up.  With this device, I could relax a bit instead of continually analyze my child for signs of low or high sugar.  Maybe, I could take one of these weights off of my shoulders.

Second device:  Laser glucose tester.  It’s very disheartening to see little black dots on my babies’ tiny fingers.  I poke their toes at night just to give their fingers a break.  How about a device that I just wave over their arm that could measure circulating glucose levels?  You know?  Kind of like the black light when you get the stamp to return to the park at Six Flags.  Yeah!  Like that.

Until a cure is found, those are my two dream devices.

Rhonda

Diabetes Blog Challenge #1: Share or Not to Share

Diabetes Blog Challenge Week #1: 

Share and Don’t Share

I work in healthcare, and although I can understand a plethora of medical conditions, I cannot fully understand what it’s like to live every one.

I never knew how helpless a parent felt when their baby was in the NICU until my twins were in there.  I never knew how much a C-Section hurt until I had one (not that that would stop me from being up in 8 hours).  I’ll never know what it’s like to have Gestational Hypertension.  I’ll never know what it’s like to lose a fetus.  I can “nurse” any patient under any condition, some times better than others, but I’ll never really know unless I’ve walked in their shoes.  The things I have experienced have made me a more empathetic nurse, but I can never fully “know” it all. 

Quarterly, my sons have to visit the Endocrinologist.  Quarterly, these healthcare professionals get a glimpse into my life. It’s just a glimpse.  Just like I work with pregnant women and newborn babies every working day, I'm only getting a 'snapshot' into their entire world. They work with Type One Diabetes every working day.  But, at the end of the day, they get to go home and think about other things.  No fault of their own, but most do not understand what it’s like to live with this beast every minute of every hour of every day. They are only getting a snapshot of our busy, crazy, hectic, beautiful world.

Beyond the smiling faces of my cute boys; beyond the weights and measurements; beyond the numbers on the last two weeks chart; beyond that dreaded “Mommy Report Card”, the Hemoglobin A1C…there’s so much more.  I wish they could see how Diabetes takes a piece of almost every facet of our lives. 

1.     When we wake up, the first thing we do is make sure our children are alive. *poke, poke*

2.    Get ready for school, check the morning blood sugar, eat breakfast.

3.    Once breakfast is selected, now Daddy and I have to THINK about breakfast.  What is he eating?  How much of it is he eating?  How is this particular meal likely to influence his blood glucose for the next few hours?  Did he finish his meal?  (All the while, someone has to feed the dogs, clean up, referee the fights, and get themselves ready for another day).  Voodoo, Science, Math and Luck.  Dose insulin.

4.    Put the boys on the bus and hope they don’t crash before they get to school. (Fortunately this has never happened on the way to school.  *knock on wood*)

5.    While they’re at school, Daddy goes to work, and Mommy does any multitude of things:  Go to the gym (and wonder how their sugar is); Go to the store (and consider Diabetes on every aisle); Pay Bills; Go to the Pharmacy (to pick up Diabetes medications and supplies); Make calls; Run Errands; Work on fundraising for our JDRF Team; Sleep for the night shift I’ll work that night.

6.    At 2:55, the boys are released from school, and I impatiently watch the clock until they get home.  I hope they don’t drop their sugar on the bus (they have provisions in their backpacks in case).  I won’t relax until they are safely back in my “nest”. 

7.    Wait, with baited breath, to get the coveted email from the school nurse.  It’s a mini-report card.  How’d we do dosing for breakfast?  How are our basal and bolus rates working while they are at school?  How was their Diabetes Day at School?  Jot all the numbers down on the clipboard, and try to make sense of it all.  *It’s an exercise in futility*

8.    Chores, Homework, Playtime.  Get dinner planned and prepared.  As I cook, I jot down the carb count of each serving of each item on the “menu” so I can keep a running tally while the boys eat.  Of note, since I’m now the Mathematician Waitress, I don’t eat until they’re done.

9.    Playtime.  Clean. Showers. Let them be “children” while I wrap my brain around it all.

10.  Bedtime blood sugar check and snack.  To dose or not to dose?  That is the question.

11.  Once the boys are in bed, that’s Mommy & Daddy time.  Time to decompress, be a husband and wife.  The length of this time is determined by fatigue level and the last glucose level.  See, Diabetes dictates when and how much sleep we can get. There’s no such thing as ‘going to bed early’ anymore without an alarm set to interrupt said sleep.  Murphy’s Law:  The more fatigued I am, the crappier the blood sugar will be…demanding I stay up even later or get up more frequently.

12.  At our bedtime, another sugar check.  Gear up with Spelunker light on head (*very sexy, I may add*).  Try to figure out which boy is which since they like to play switch-a-roo on us.  Insulin one, carb another.  Don't mix the two up! Plan the next time to get up to recheck depending on the readings.

13.  What?  Sleep all night?  Don’t make me laugh!  Get up heifer, and make sure your boys don’t need anything else….more insulin?  More carbs at 0200?  Drop back in bed, hopefully, for a very few more hours.

14.  0545.  Start all over again.

I wish they could see how our hands are now tied since our babysitting options are severely limited. I wish they could see how managing ONE diabetic is difficult, but managing TWO is formidable! I wish they could see how seriously I take every meal.  I wish they could see how much I worry.  I wish they could see how hard I try.  Surely if they could, I could get a “handicap” or bonus points on that A1C.

I’m glad they don’t see me cry (*wait, yes they have.  I fell apart 2 visits ago!*)  I’m glad they don’t see me get frustrated and angry.  I’m glad they don’t see the dark circles under my eyes and crazy hair at 0200.  Mostly, I’m glad most of them don’t have to live with this because it’s not something I’d wish on my worst enemy.

To know scientifically and medically “know” a condition, it’s very easy to advise.  It’s easy to make suggestions.  It’s easy to judge when you’ve never walked in someone else’s shoes.  I’m guilty of it myself when I give the SAME lecture EVERY shift about the importance of adequate WATER intake in pregnancy. 

Looking at the “glimpse” of our lives doesn’t tell the entire story.  It’s only a facet of who we are and what we do to keep our boys healthy, thriving and alive.  

It's My Party, I'll Whine if I Want To

It’s My Party, I Can Whine If I Want To.

Nobody has necessarily outright told me I’m playing the victim after my sons’ Type One Diabetes diagnoses, but it begs the question if some have thought it.  If the thought has ever crossed one’s mind, this one’s for them.

Most days I handle this diagnosis well, but there are days it gets to me.  This craptastic disease victimizes not only the innocent patient, but it also victimizes the family.  Diabetes, the Robber.

My 7-year-old sons did nothing to cause or deserve this disease.  Yet, it was thrust in their laps, and they will be forced to deal with it until the end of their lives or until a cure is found…whichever comes first.  Diabetes is not the worst enemy in the world, but he has still stolen so much from my sons and our family.  In the words of my friend, “because of this theft”, they will always have sore fingers that get more calloused and tougher by the day.  They will always have to take insulin just to survive, whether by regular shots or via pump.  They will have their blood drawn via venipuncture and have to see the Endocrinologist every three months.  As if that wasn’t enough visits, they still have to see the pediatrician for regular check-ups (like any other kiddo), and they have to go to the Ophthalmologist annually.  All of this, to screen them for long-term complications including kidney damage, vascular damage, blindness, and nerve damage.  That’s a big EXPENSIVE pill to swallow for an 8-year-old baby…an expense they’ll have all of their lives. Most of the time we do our best and roll with it, but there are days when it just gets to me and I feel a bit sorry for myself (and them even more!).

Diabetes the Hijacker has hijacked their innocence.  Now, they know way too much about anatomy, medicine and health than any child their age should have to know.  They worry about immediate and long-term complications of an abnormal glucose (high or low). They have to suffer the curious stares and questions of classmates, friends, and strangers when they check their sugars, have to go to the nurse daily, or hear their Omnipods beep.  They have to endure being teased by ignorant idiot children who target anyone who has to do something out of the ordinary.  And, Mommy has to worry about ANY minor illness knocking them down and hospitalizing my child with diabetic complications. What you fix with TLC and Tylenol can devastate my diabetic child.  The majority of the days, we work hard to manage it and teach the boys to roll with the stares and teasing, but sometimes, I feel sorry for us, and I just want to throttle someone.

Diabetes the Burglar has stolen the simplicity of having a meal or an outing.  We have to count every carbohydrate my boys consume, every meal, every day, every time.  Nothing is free.  Diabetes robbed them of the freedom to just pop some M&Ms in their mouth or grab a cookie and run about their day.  A field trip, walk to the park, or picnic is not simple anymore.   A restaurant outing can be a nightmare with trying to make sure everyone orders what they want, count the carbs, dose the insulin.  Needless to say, I don’t think I’ve eaten a hot meal in a restaurant in a long time if the boys are with me! Most parents just grab their shoes and head to the park or for a walk.  I have to bring the D-bag and pack a snack. Most parents just worry about what the kid will wear and pack a quick lunch for a school field trip.  Today, it took me almost 45 minutes.  Pack 2 lunches.  Document the carb count of every item in the lunch kit.  Pack Diabetes Bag…the same D-bag that has to be taken with them wherever they go.  Don’t take your simple picnic or field trip for granted.  Most days I just roll with it, but sometimes it really pisses me off!

Diabetes the Bandit has stolen regular undisturbed sleep from my boys, my husband, me and the grandparents.  I paid my dues.  I breastfeed twins for 8 months, and I spent over 6 months without sleeping longer than 4 hours at a time in order to give them the best start possible.  Now, there’s no such thing as going to bed early.  If I do, I have to set an alarm to check the boys’ blood glucoses (or make sure the hubby stays up).  One night, it’s high and I have to fix that.  Other nights, it’s low and I have to poke them and hope they will wake up enough to consume carbohydrates to restore normoglycemia.  Unless the boys are at Grandma’s house (whereby she is getting up in the middle of the night checking them), I don’t get to sleep uninterrupted.  Ever.  I think when they are 33 I’ll still worry about them in the night.  Most nights, the boys sleep through the checks, but sometimes it awakens them, too.  I stay up late to assure they are ok, and I get up again during the night to make sure they stay ok. On top of that, there’s no sleeping late either.  If the boys sleep past a certain hour, I’m immediately gripped with gut-wrenching, heart-pounding fear that the worst has happened to them. It’s not cool at all.  I thought I was over that when they passed the age of SIDS risk.  Life's not fair. Most night, I just suck it up, but sometimes, I just cry. 

Diabetes the Mugger has taken away life options for my boys.  Never will their lives be like someone without diabetes.  They can pursue almost any career path…almost.  They’ll never be a soldier as much as they’d like to.  They’ll never be able to live alone as it would be unsafe for them, thus stealing complete independence from them.  They will have to have constant medical identification on so they aren’t mistaken for a drunkard, thus advertising their private business for all the world to see.  They’ll have to make special provisions before they operate any vehicle. In whatever schooling, work, or activity they choose, Diabetes will insist upon being noticed and acknowledged…or he WILL wreak havoc!  Most days, I don’t think too much about more than the immediate future.  But, when I hear them passionately singing “Army of One” (by Bon Jovi, of course), it breaks my heart that they’ll never get to be that soldier Jon sings about.  Sometimes, I pity us.

I was invited to this party, but I didn’t want to go.  Now that it’s “My party”, I’ll cry (and whine, and pout, and feel victimized) if I want to!  I’m not usually and don’t like to be a Debbie Downer, so most days are fine. If you know me, know that I try not to saturate every conversation with Diabetes talk. But, this thief has not only stolen so much from me and my boys, but he dominates my thoughts to boot.  I try to keep it light, but we live with this every day.  Every. Day. And, since I’m forced to act in a role for which I am ill-equipped, will never fully understand, and will always be inadequately trained….I’ll whine and cry if I want to! 

What I can do to cope is listen to my Bon Jovi, joke, love my family, and do my part to raise money in the hopes of finding better treatments and a cure.

Support us today so we can party without crying!

Rhonda

www2.jdrf.org/goto/FuseA2Team