Hungry Trauma and Thorn in My Side

Hungry Trauma and that Thorn in My Side

February 21, 2014

I never cease to be amazed at the things that strike me as odd about Diabetes or the things that make me cry.  Most days, I feel like “This sucks, but I got this!”  Other days, I’m taken aback. My mind is constantly churning, trying to understand, do better, find solutions.

On Aiden’s Diaversary Eve (Wednesday night), we had Baked Potato Soup for dinner.  It was fabulous, if I do say so myself. Lots of carbs that I dosed for, a little lacking in protein.  I was wicked tired that evening given the crapola night Diabetes had handed me the night before.
Two Years Sweet and Strong
At 7:30 pm, just  prior to 8:00 pm bedtime, the boys were a respectable 96 and 130 each.  I cracked a smile!  Take that, Diabetes!  They each had a snack bag of nuts.

At 9:30 pm, I decided to check the boys a little earlier than I ordinarily do in hopes that I could go to bed.  Apparently, Diabetes saw that smile and felt my pride two hours earlier.  He rubbed my face in it!

Asa was on the bottom bunk.  Usually, when I grab his hand, he instinctively jerks back away from me or his hand is relaxed so I can pick a finger (or toe) to poke.  He's a fighter! This time, instead, he stirred and began muttering, “Hungry, hungry, hungry, hungry…”  It was the tiniest, quietest, quivery, most pathetic voice or thing I have heard in a long, long time.  As soon as he said it, I knew he must be low.  39.  I choked up.  I just wanted to hold him and tell him it would be ok, but that wasn’t going to help.  I had to intervene to save his life.

Under usual circumstances, a bedtime low would have me frustrated, cursing Diabetes under my breath.  But on this night, I was exhausted, and my emotions were raw due to the next day’s Diaversary.  After checking Aiden, too, (he was a whoppin’ 32), I ran downstairs to gather carbs.

I felt the tears welling up but I had to stave them off so I could intervene.  Each boy drank 4 ounces of chocolate milk, ate a few bites of a banana, and washed it down with half a juice box….all while asleep.  When I returned downstairs, the flood gates opened.

Diabetes won that night.  He got under my skin.  He got to me.  My baby’s sugar was so low, his brain was trying to send a message to his body.  His brain, desperately deprived of its only fuel source, glucose, was crying out for help.  “Hungry, hungry, hungry, hungry….”   Even while asleep, his body was begging for intervention, begging for what it needed to survive.

I cried to know his body was so desperate.  I cried to know I’ve been dealing with this for two solid years and I don’t know when it will end.  I cried because I was tired beyond belief, and now I had to stay up for at least an additional hour to make sure they were safe.  I cried because a little child should not have to beg for what his body needs to survive.  I cried in fear of what may have happened had I waited another hour to check, as I typically would do.  I cried because that was the saddest sound I think I’ve heard in ages.  “Hungry, hungry, hungry, hungry….”  I am crying writing this. I cried huge flowing tears.

The next day, I teared up again thinking about Aiden’s Diaversary, and I teared up several times as “Hungry, hungry, hungry, hungry…” echoed in my ears.  It was truly traumatic to me.  I’m glad his brain had the wherewithal to ask for what it needed, but I don’t think I ever want to hear those words uttered in that voice ever again.

“Hungry” was still echoing in my head today, almost 48 hours later.  Jamming my “therapy” CD, I heard a song I’ve heard a 100 times.  Except today, I heard it a little differently.  It was a great sentiment to how I feel about Diabetes and the way He treats me.  When I crack a smile, he rubs my face in it.  He’s a thorn in my side that just won’t quit.  Diabetes can test my faith, but He can’t take my pride, my boys.  For these boys, I’ll fight to the death.

Dedicated to you, Mr. Diabetes!

Thorn in My Side

Thorn in my side

You're always there

Just to remind me

That I still care

Thorn in my side

You won't let me go

Right there beside me

To let me know

I've been pushed around

Been knocked down

Lost a round or three

Life took a couple of things I loved

When I was too blind to see

But I'll survive

I gave up on luck but I'm still getting by

Yeah I'm going to be alright

You can test my faith

But you can't take my pride

Thorn in my side, thorn in my side

Thorn in my side

You just won't quit

Once in a while when I crack a smile

You rub my face in it

Thorn in my side

You won't let me run

God bless the fights

That I've lost and won

But I'll survive

I gave up on luck but I'm still getting by

Yeah I'm going to be alright

You can test my faith

But you can't take my pride

Thorn in my side, thorn in my side, thorn in my side

Thorn in my side, thorn in my side, thorn in my side

I've been pushed around

Been knocked down

Lost a round or three

Life took a couple of things I loved

When I was too blind to see

But I'll survive

I gave up on luck but I'm still getting by

Yeah I'm going to be alright

You can test my strength

But you can't take my pride

Thorn in my side, thorn in my side, thorn in my side

Thorn in my side, thorn in my side, thorn in my side

--The brilliance of BON JOVI (From The Circle)

Thorn in My Side

Rhonda

Two Years Sweet and Strong

Diaversary #2                                                                           February 20, 2014

After a pod failure on Tuesday….or failure to report his pod came off (thus delivering zero insulin into his body, lots into his backpack!), we had a crazy high…435.  I gave Mr. Aiden a shot to bring his sugar back under control, and I put a new pod on.  Two hours later, he was about 225.  Coming down, but I also anticipated a late post-Doritos-and-taco-salad high (yes, that’s a real phenomenon), so I gave him a small amount of additional insulin and went to bed.

I lay in bed pondering the meaning of life and going through the Diabetes equation in my head. 

(Current Glucose Level + Carbs on Board+ Insulin on Board divided by fat and protein content of latest meal multiplied by the day’s activity level and age and site of pod subtracted from the color of his underwear squared.  Divide that result by the phase of the moon…and presto)!!!

This happens every night….at the end, the result is what time I need to wake up to check them again.  The result varies.  Tuesday night, the result was 2 a.m on Wednesday morning.  Alarm set.

At 0200, I awoke to discover that I was well-advised to wake up at 2 a.m.  Asa was near perfect at 112, Aiden was 51.  So, he got to sleep-drink a juice box.  I lay down for 20 minutes and rechecked.  39.  WRONG direction.  So, he was privileged enough to sleep-drink about 20g worth of Carbohydrates in the form of Chocolate Milk.  Twenty minutes later, at almost 3 a.m., he scored a perfect 100.  Now, and only now, am I allowed to go back to sleep.

Except.  I can’t.  I’m awake enough now that sleep evades me.  I think out my upcoming trip; all the things I need to do before the trip to make sure my guys are ok without me; what I need to do today; stresses in my life; what’s right in my life (including the sexy warm man next to me)…and Good God…what may have happened has I not woken up at 2 a.m.  He skated in at 0600 on Wednesday morning with a respectable 112!  Perfect ending to year number 2.

Two years ago today, Diabetes officially invaded our lives. I can recall vividly the fear, helplessness, pain of that day.  It still makes me cry. Although it’s routine, no two days are the same. … it’s sort of like my job in Labor & Delivery.  Most days are fine; some days are great; some days just plain SUCK!  I’ve learned a tremendous amount over the past two years, and I know I’m light years away from knowing nearly enough.

But here’s what I do know:

My baby is alive.  He is growing and thriving.  He is smart, passionate, and funny...the spitting image of his father!  His behavioral problems, stomach pain, visual disturbances and dehydration have been replaced by finger-sticks, insulin, pumps, appointments, and shots.   I know as long as we do our best, he can live an imperfectly ‘normal’ life.  I know one false move on my part could cost him his life.  That, my friends, is humbling and explains the newly sprouted (but recently covered) gray hairs.

Today, we celebrate his life.  We celebrate how brave and strong my Aiden is.  We celebrate that although the diagnosis sucks, it wasn’t worse.  I get to keep a modified version of my perfect baby!

Now, we learn and grow with him.  We Walk to Cure Diabetes every year.  I’ve written a book describing the emotional journey of the first year of diagnosis….times two
Mommy Can't Fix It

One can watch and support our journey on my new Facebook page at www.facebook.com/FuseA2Team. (Two Too Sweet).  Besides the day to day medical care and parenting combined, it’s what I can do.

I’ve battled the mourning and negative thoughts all day.  I’ve staved off tears at least three times.  Some good Bon Jovi infusions have helped with that.  But, now, he’s home..and we celebrate!

Pancreas out,

Rhonda

Vials of Life

Vials of Life in a Box

The only way to sustain my boys’ lives is to inject extrinsic insulin into their bodies.  Without it, they would perish over time.  It would be a long, drawn out and painful death.  100 years ago, this would’ve been their fate.  Fortunately, medical advances have lead to the development of life-sustaining injectable insulin thus they can live an imperfectly “normal” life.  Frederick Banting (and researchers since then) probably saved this Mommy from sitting in a corner, rocking, plucking her hairs out one by one.

This is the current box of insulin in our refrigerator.  Each blue-topped box is one vial that has 1000 units of insulin.  On a low average, each boy uses about 100 units every 3 days.  Two boys using 100 units each means 200 units used every three days. Thus, one vial will last us approximately 15 days….if we’re lucky.  There are 13 vials of insulin in the refrigerator that must be kept at a specified temperature.  13 vials of 15 days each means I have 195 days of life sitting in this box.  A power failure or cracked vial can damage the insulin, and in theory, shave days off their lives.

That may sound like a lot..until you put it into terms of a child’s life.  195 days isn’t nearly enough.  A child's days should not be numbered, should not be finite. I want more.  I need more.  Looking at it like that is very humbling.  I guess I need to go to the Pharmacy. When you look at a vial of insulin in terms of days of life it provides, I guess one can understand why we D-parents suddenly turn into Hoarders.  We want to secure as many days as possible.  

Humbling…. May you never have to look at a medication (or anything else) and think of it in terms of how long it will sustain your baby's life.

Rhonda