Friday, June 21, 2013

Check Your Tone

Check Your Tone

June 21, 2013

Let me preface this entire email with two facts:
1.   I’m very grouchy when I’m tired.  My sleep was patchy at best on Thursday night.
2.  I’m sort of touchy and OCD about my boys’ A1C levels. Sort of.

With that being said, I now fire off!

Part of managing and following Type One Diabetes is annual Ophthalmology appointments for the boys to evaluate for and manage any diabetes-related eye complications.  I took the twins today (Friday).  It was Aiden’s second visit, and Asa’s first visit since he was diagnosed after last summer’s appointment.

These appointments are LONG. Check in.  Fill out update papers.  Wait.  See Optical Tech.  Get eye drops.  Wait for 30 minutes while dilating drops take effect.  See Other Optical Tech Guy.  Wait.  See Dr. Ophthalmologist…..Times Two.  Because of my other son’s eye problem, I’ve done this at least yearly for the last TEN years.  There’s no getting around it.  Now, I get to do it times three.

I’ve NEVER had a problem in the Ophthalmology office before.  Never, and we’ve been coming, as I mentioned, for 10 years now. I can’t remember what Mr. Other Optical Tech Guy’s title actually is, but he does measurements, assessments, etc., before the actual physician arrives in the room.  The guy today (Mr. OOTG), we’ve never seen before.

Well, he rubbed me all sorts of wrong. 

He saw Asa first, who has never had an Ophthalmology exam (although he’s familiar with the process from being forced to tag along all these years), and he has only been T1D for 10 months.

Mr. OOTG:  “What was his last A1C?”
Tired Grouchy Mommy:  “Asa’s last A1C was 7.3.”  (Just for the record, that was DOWN from the last visit)
Mr. OOTG:  “Is your Endocrinologist happy with that?”  (His name is now Mr. Judgmental Tone)

Now, the question itself is harmless enough.  That wasn’t the problem.  The problem was the TONE in which I felt it was asked…in front of my child.  I let this one breeze by.

Next he evaluated Aiden.  Aiden has been T1D for 16 months now….16 months today…thanks for forcing me to think of that!

Mr. Judgmental Tone:  “What was his last A1C?”
Tired Grouch Mommy (who doesn’t like his tone):  “Aiden’s last A1C was 8.0”
No comment from Mr. Problem Tone, but clearly, Aiden saw the elephant in the room.
Aiden:  “Is that good, Mommy?”
Tired Grouchy Mommy: “It could be better”
Mr. Judgmental Tone:  “Yeah, you could say that.  It could be better.”

He finishes and leaves.  We see the Ophthalmologist who reassures us all is well with the boys’ eyes, and after 1:45 minutes, we are set to leave (after paying yet another steep diabetes-related bill). 

As I ponder and brew over the course of the day, Mr. OOTG’s tone and remarks bothered me more and more.  My husband, knowing me better than anyone, reassured me that I wasn’t being an ass. Mr. Judgmental Tone's tone and remarks were inappropriate. 

So, here’s what I’d like to say to him, and I just may when I have to return to the same office on Tuesday for my non-T1D son. (Oh, sweet justice!) I’m sure EVERY T1D parent can echo my sentiments.

Mr. Judgmental Tone Guy,

I am a Registered Nurse, and I am a Mommy (first and foremost).  I was thrown into dealing with this craptastic disease against my will….twice.  I KNOW what my boys’ A1C levels are.  In fact, I obsess about them. Despite being encouraged and instructed to NOT view it as such, I view the A1C as MY report card…and I dislike making anything but A’s!  I KNOW what my Endocrinologist would like them to be.  I’d like them to be even better than that. I am an intelligent and educated professional, but unfortunately, I was NOT born to be a pancreas.  It’s a tough job, there are many factors that impact it, and there’s a steep learning curve.

I am doing ALL that I can to combat and manage this invisible beast.  I stay up late at night, well past my bedtime, defying my fatigue level.  I get up in the middle of the night to check on the boys again in case they need carbohydrates for hypoglycemia or additional insulin for hyperglycemia. I do frequent bolus and basal testing to make sure the insulin ratios are as good as I can get them. I increase insulin one week, just to have to reduce it back down (or raise it additionally) the very next week.

Mr. Crappy Tone, I am dealing with active 8-yr-old boys who are growing by leaps and bounds. Aiden, in particular, has exited the “Honeymoon Phase” of this disease earlier than expected.  He has grown several inches and gained almost 20 pounds in the last 16 months.  Both of these factors complicate managing his glucose levels and insulin ratios.  After only 10 months, Asa, too is rapidly exiting the Honeymoon Phase of this disease as both boys have ALL THREE antibodies attacking their tiny pancreases at once! He is growing like a weed, and he has gained 16 pounds in 10 months.  It’s not easy at all.

I read anything and everything I can get my hands on regarding this disease.  I’m staying up-to-date on research.  I’m doing what I can to aid in fundraising to help find better treatments and a cure.  I’m working very hard at being TWO pancreases, which is a job for which I’m ill-equipped. I take my boys to the Endocrinologist quarterly, who is pleased with how my husband and I are managing our boys’ care. I take them to the Pediatrician yearly (and as needed).  And, I take them to you yearly, too.  In the meantime, I’m still trying to be a mother to two adult daughters.  In the meantime, I’m still trying to manage THREE other boys who have their own sets of issues.  In the meantime, I’m still trying to be a stellar wife, the arm candy, the envy of my husband’s friends.  In the meantime, I still have to work.  Most importantly, in the meantime, I’m trying to make sure my twins still have a CHILDHOOD despite dealing with very adult issues!

So, trust me when I say I’m doing my best.  Believe me when I say I’m investing ALL I CAN into this disease and managing my boys because I love them with every ounce of my being, and if ANYTHING happened to my “babies”, I would NOT be ok….ever…again.

With that being said, until you walk a mile, a minute, a day in my shoes, keep your tone to yourself.  You DON’T KNOW what dealing with this disease is like until you have to deal with it every minute of every hour of every day.  There is no remission.  There is no vacation.  I’m aiming every day for ideal A1Cs.  I think about it EVERY DAY. I want that A on my report card.  Just like a fat person doesn’t need you to point out that they’re fat, I don’t need you highlighting that my boys’ A1Cs are more than we’d all like them to be! You worry about the eyes, the Endocrinologist and I will worry about the A1Cs! If you give me nothing else, keep your tone under wraps and give me bonus points for at least being able to pronounce and spell “Ophthalmology”.

Not born a pancreas, but I play one in real life.

Friday, June 14, 2013

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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Saturday, June 8, 2013

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