Dreams Come True

This one's not too T1D related, but it sort of is.  And, I can't help but shout it to the world!

I've mentioned my love for Bon Jovi in a past blog (http://www.blogger.com/blogger.g?blogID=3991210116007822858#editor/target=post;postID=8613411686367354952;onPublishedMenu=allposts;onClosedMenu=allposts;postNum=21;src=postname
  (Sure hope that link really works).

I've been a fan since I was 13.  Love Jon. Richie is a guitar god! Love the music.  It's really dope for my soul.  It's upbeat when I'm feeling good and calming when I'm feeling stressed.  It motivates me in the gym and when I run 5Ks.  I've never run without Jon singing in my ears. 

Ok, brief story.  In all the concerts I've attended, I've wondered how people got so close.  I was never lucky enough to have an accidental run-in with any of the band members.  After finding my awesome Bon Jovi buddy and joining the Fan Club, I've gotten closer by degrees each time since about 2008.  My dream:  Get a photo with Jon Bon Jovi and tell him what Bon Jovi has meant in my life.

I've gotten pretty close with our fan club seats and backstage tours.  In one group, I was the only one who missed shaking Jon's hand backstage (that's another story).  Up close on stage, I've narrowly missed Jon although I did get to shake Tico Torres' and Richie Sambora's hand once!

In Austin, I got to shake Jon's hand outside the Circle (part of the stage).  I swear he made eye contact and had a prolonged handshake with my friend Gennie.  In Dallas, I was inside the Circle.  I held a little boy up so HE could shake Jon's hand, which meant I missed my chance.  That was ok.  That little boy had a wonderful moment, and it was up on the Jumbotron!  :)  I got lucky, Jon came back around and I indeed got to shake his hand after all.  Getting closer to my dream, closer by degrees.

A couple of weeks ago, my friend and I stumbled into the band in hotel bar and got to hang out with two band members and Jon's brother.  That was WICKED cool!  We're not crazy.  We didn't press for secret information.  We just hung out and talked like normal folks.  They thought we were totally cool...and we are! :)

Gennie and me hanging with keyboardist David Bryan after the Dallas concert

Gennie and I jetted to Las Vegas on April 18 for an organized Fan Club trip.  This was yet again something I've been dying to do, but the timing and/or $ never seemed to pan out.  I told people I was going to Vegas, but I kept my clam shut about this:

Yep, that's the real Jon Bon Jovi with his arm around me!



I was a brief photo op, but it felt so good to stand next to him, say hello, and "smile for the cameras"!  I didn't get to say what I'd wanted because of the hurried situation (photos for 200 folks takes a lot of time), but it was wonderful nonetheless!

And, here's the kicker.  When I'm at Bon Jovi, I don't think about Diabetes.  For those couple of hours, my mind is immersed in the music, the crowd, the entire experience.  It's a much needed dope injection for my soul! 

It's all made possible by having a cool like-minded and fun Bon Jovi buddy, and it's all made possible by having the coolest husband alive who takes over so I can "breathe" and recharge.  A husband who is secure enough to know that I loves me some JBJ, but he is the only man for me and the one I'm coming home to!

*squealing like a school girl*,
Rhonda

Unbreakable Bonds

Unbreakable Bond

April 17, 2013

Two incidents yesterday reminded me how precious and strong a bond is between twins.  Unless you are a twin or have had the honor of parenting twins, you’ll just never get it.  It’s incredible.  Here’s my story:

Imagine our surprise when I thought I was expecting Baby #4 (our 6th together), only to be told on OB/GYN visit #1 that there were TWO.  There aren't very many adequate words that describe that moment and that day.  Shock. Disbelief.  Elation.  Shock.  From that moment on, I wished only to carry my babies to as close to term as possible.  I didn't care the gender; I just truly wanted non-premature healthy babies.

Only 4 weeks early (and with big brother Jace only16 months old), Asa and Aiden were born healthy (albeit a little skinny).  I brought home two healthy 5-lb babies with no medical complications.  My wish came true. 

Asa and Aiden at 3 weeks old.  All head and eyeballs!

 

 

Our first year was filled with diapers (in triplicate), sleepless nights and very little money, but every bit of it was worth it to watch these boys grow together. We were told they were fraternal twins, but we could find no differences, and we had to be very diligent in how we dressed them in order to tell them apart.  By age one, we still couldn't tell easily, so we had them genetically tested.  They are indeed identical twins.  I figured this information could help us answer the questions of interested friends and nosy strangers; this information could serve them well medically in the future.



 



Asa and Aiden, Age 1

 

Watching them throughout their infancy was amazing.  They'd hold hands while breastfeeding. They'd snuggle up to each other in the night.  They'd crawl to each other.  Laugh at each other.  Look for each other.  They walked at approximately the same age.  They erupted teeth at the same time.  Once upon a time, they were ONE person (one ball of cells), and they turned into two magnificent and cute baby boys!

 

 

The twins went to preschool together at age 2.  They were nervous to leave Mommy, but they were secure as long as they had each other.  If anyone suggested separating them so they could "form their own identities", I think all three of us cried.  It just wasn't right for them.  Even in preschool, the girls loved them.  One loved them "because they have the same head".  :)

First Day of Pre-K 4

 

Fall 2007...Lookin' JUST like their Daddy's kid photos!

 

 

When Kindergarten started, we opted to keep our boys together.  They needed each other to brave this new adventure of "big boy school".   Seated apart in class, they thrived.  They made friends.  They learned, they excelled, and they sat by each other at lunch and PE.  The girls chased them mercilessly.  Asa recently told me, "You don't EVEN understand Mommy!  They hug us, and kiss us!  It's tough!"

 

 

After Kindergarten, Asa decided he wanted to be in different classes for First Grade.  Aiden did NOT.  I talked to each of them individually about their feelings.  Asa said, "I don't like people always asking me 'Are you Asa or Aiden?'"  He wanted his own identity separate from Aiden. (I knew this day would come, and I was glad it was on our terms and not the school system.) 

 

When I asked Aiden about his feelings, he threw a dagger right through my heart. 

"When Asa's not with me, my body just wants to cry." 

 

I had to put on my Mommy-Fix-It hat.  We compromised and came to an agreement.  The boys stayed together one more year in First Grade, and they separated this year for the first time in Second Grade.  They are happy, but they still flock to each other every chance they get.  They play at recess together.  Go to the nurse together.  Stay together on field trips.  I don't think anyone can really fully make them ever be completely apart. Covalent bond.

 

Examples of this bond, you ask?  Ok.  Here's a couple.

When the twins were about 3 or 4, one of them got a swat.  Broken-hearted, he sat on the floor and cried.  The other ran to his side, crouched down and hugged and held him.  In brave defense of his twin, he shouted at me, "YOU NOT HURT MY FRIEND!"  How can  you argue with that?  That's how they are. They'll whack each other out of frustration, but nobody else better even try.  They'll immediately rush to each other's aid, worry about each other, and look out for each other.

 

When Aiden cut his forehead open around age 3 or 4, ASA was the one losing it, scared his brother was going to die.  I had to "stop the bleeding" on two fronts there!  It was sort of hard to hold pressure on a cut and assess the situation with a hysterical twin in the background. 

 

When Aiden was diagnosed with diabetes, it made me cry even harder to see Asa's face when we told him Aiden had to go to the hospital...as if I hadn't cried enough already.  Daddy brought Asa (and the other brothers) up right after school to see Aiden.  He NEEDED to see Aiden was ok.  That was the first night in their lives they'd slept apart from each other.

 

Everyone piled in to see Aiden in hte hospital.  D-Day 2/20/12

Five months later, Asa was diagnosed with diabetes.  When we told Aiden, his face lit up.  He smiled.  Now, he was worried on one level, but he knew Asa would be ok.  And, he knew that now there was again no difference between the two of them.  Now, he had someone to brave this fight with.

Aiden hugging Asa in the hospital, August 2012

 

Asa and Aiden getting their new Omnipods!

 

 

 

Now, with Diabetes running the show, they have a new level of concern for each other.  Their bond is stronger and deeper.  Like atoms and electrons, it's on a cellular level that isn't even visible to the eye.  The first time Aiden's sugar got crazy high (due to Mommy's bad SWAG), ASA was the one who was most worried and scared. He was freakin' out, wouldn't sleep, demanding I take Aiden to the hospital because he didn't "want him to go into a coma".  It was more work reassuring him than it was to correct the bad glucose level.  The same happened in reverse a couple of weeks ago.  Asa's sugar got way high; Aiden exhibited the most concern.  He didn't go into a full-scale panic like Asa, but I knew he was terribly worried because of the questions he fired at me (like the Spanish Inquisition).

"What number makes you go into a coma?"

"When will you check him again?"

"Will you check him during the night?"

"Did you give him insulin?"  "How much?"  .... and on and on. 

 

In all fairness, what 8-year-old should have to know this much, worry this much?

 

Asa and Aiden on their 8th birthday, October 2012.  In another day and time, they may not have lived to see this day. 

 

 

So, yesterday, I was given another glimpse into the level of covalent bond of these boys.  I took the boys for a walk.  Asa decided to ride his bike.  Since they are not immune to the laws of physics and momentum, I require they walk their bikes down the hill.  To Aiden, Asa looked like he was about to ride his bike down the hill, and Aiden clearly felt immediate terror.  He shouted, "Asa, no!  Asa, Stop. Walk!"  When Asa got off his bike to walk it (as he'd already planned to do), Aiden said, "He scared me to deff.  He broke my heart cuz I thought he was going to be hurt". 

 

At the park, Aiden tied up with his older brother over a ball.  Before I could respond, Asa ran Olympic speed to Aiden's side and was pulling Jace away from him!  He also threw himself over Aiden and fussed at Daddy for ticklin' their toes!  They don't even consider the consequences; they are just immediately by each other's side for defense or protection.

 

It never ceases to amaze me how much these boys love each other.  How they feel each other.  How they worry deeply about each other, oftentimes before themselves, and will defend each other against the strongest forces (ie., Mommy and Daddy).

 

Diabetes may have invaded their bodies, but it didn't destroy that bond.  Yet another thing you can't break, Diabetes!

 

It can be difficult to raise twins; it's very hard managing two identical diabetics.  But, watching this impenetrable bond makes mothering them an honor.

 

Christmas 2012.

100 years ago, Type One Diabetes was a death sentence. I cannot imagine how I would have survived to have these children placed into my care, watch them grow, witness this amazing bond...only to have them taken from me by a cruel disease.  I'm thankful every day that times have changed, and although Diabetes is Stupid, it hasn't taken them from me!  However, we still have a LONG way to go in finding a cure and better treatments for Type One Diabetes.  Help me help JDRF in finding a cure for my boys.

 

www2.jdrf.org/goto/FuseA2Team

 

 

 

Rhonda



 

 



 

 

Transformed

Transformed
April 16, 2013

Fourteen months ago, Diabetes moved in.  He showed up announced, uninvited, and staked claim on parts of our lives and home that weren't up for sale. Diabetes transformed our lives.  Immediately, our primary concern was transformed from 'Who wants spaghetti for dinner?' to 'How many carbs are in that plate of spaghetti?'  Suddenly, worrying about a kid crawling into bed with us at 0300 transformed into crawling out of bed nightly to check a blood sugar at 0300 to make sure that same kid is still capable of sneaking into our bed.  Diabetes transformed a simple walk to the park into a planned event complete with snacks. 

To say it has changed our lives is an understatement.  Diabetes has taken over our lives.  It's embedded in our psyche.  It plagues my daily thoughts. It dominates my grocery list and consumes a good portion of our monthly budget.  And, it's taken over my house. 
Take a look:

Anyone who knows me knows that life makes no sense to me unless it's organized.  It's truly a strength of mine.  I don't know how anyone can attempt to manage T1D if they are not organized.  First thing I did was make Aiden a diabetes notebook.  Inside, I keep his completed weekly glucose logs, his Endocrinology reports, a nerdy flow chart tracking his A1Cs, testing papers, and lab orders for the next Endocrinology visit.  The clipboard is for the current week's blood glucose logs.  Notice the highlights...the bane of my existence. 

In the background, you can see his Diabetes kit which includes alcohol swabs, extra AAA batteries, syringe, lancets, strips, meter, PDM (which controls his insulin pump) and glucose tablets. 

Because wrapping your head around one isn't enough, we added another one 5 months later.  Same set-up, color-coded.  It helps, but it doesn't completely prevent me from screwing it up some days...and some very tired nights!

The clipboards, the notebooks and the kits all have a proper home (inside the drawers  and cabinet below), but convenience and Diabetes has more often than not left them taking over my kitchen buffet counter. He wants to be out in the open, being noticed and watching us like a strange voyeur.

This is what I call "Diabetes Central".  It's supposed to be this hip little prep counter next to my oven.  But, since it's more out of the way of cooking space, Diabetes has claimed this space as it's primary home.  White drawers with daily supplies.  School PDM travel packs wedged to the left of the white drawers. Bottom cabinet shelf with notebooks, reference materials and OTC medications.  Third and Fourth shelves house $1000s of Omnipods and overstock of pump supplies.  Notice the classy Gain container that serves as a Sharps container. Throw in my calendar and some ADD meds, Spongebog Gummy Vitamins, and Diabetes Central is complete.

A glimpse into the bottom drawer.  Really, it IS organized!!  It's organized chaos. I know just what lies in all that madness.  Medications. Needles.  Lancets. Test strips.  Current opened insulin. Alcohol (not the good kind).  Cotton balls.  Wraps for the Omnipods.  Decorated duct tape for the Omnipods (which they never really use).  Pump application and detaching supplies.  Isn't life grand? Oh, and my spelunker headband flashlight that looks SO sexy in use, but since I'm not an octopus, I need it to see to do those mid-night glucose checks. (I think it's Diabetes way of making me look even more foolish than I already do.  He's making fun of me, too!)

Because ruling Diabetes Central wasn't enough, Diabetes has staked claim on parts of my refrigerator.  Where you store butter and eggs, I store the one hormone injection that keeps my sons alive.  Oh, and the Juice Box that I'd never buy ordinarily because you're really just paying for the cute convenient packaging.  For T1D families, that cute packaging is precisely the number of carbs we need to rescue a plummeting blood sugar.  So, insulin and Juicy Juice have become roomies per the dictation of Diabetes.  I'm sure he'll find a way to just command the entire fridge eventually.  Give an inch, he'll take a mile.

 Diabetes spread his tentacles to another cabinet facing (or you could blame Jerry for not mounting it on the cabinet door I intended him to...either way).  This is our lifeline.  At a glance, my co-pilot can look and see what's up today in regards to Diabetes.  I made a form for each boy with insulin:carb ratios for each meal and basal rates that I update with every change.  We use the dry erase to jot down carbs and servings for each meal.  Because, I'm good, but Diabetes is better.  He's zapped many of my brain cells, and I just can't always do it without a little "reminder" about what they ate., how many carbs per serving, and how many servings.  ( Fun, huh?  A huge math test, at least three times per day! Yippee! ) 

This board also has emergency #s, when the next insulin pump change is due, and WHO has pissed Mommy off and doesn't get to play electronics.  THAT was the best thing I EVER put on this board  (in Sharpie) because nobody wants their name up under that slot! :)  (And, it helps me keep track of who lost privileges and for how long, lest I appear inconsistent because Diabetes consumes all my brain power.  Now, I'm rambling).

 

I thought the days of carrying a D-bag (diaper bag) were over, but Diabetes laughed in my face.  He demands I carry a bag on any outing that last longer than 52 nanoseconds. (Trust me, I've tried leaving it behind on the briefest of journeys only to be mocked by Diabetes!  Any time you think you can pull one over on him or get ahead, he'll remind you who is boss!)  I've yet to find the perfect bag that has everything just like I like it, but this one is close, and it's cutely monogrammed.  Inside are emergency back-up supplies, Glucagon, extra pods, the Carb Counter book, and snacks.  Whenever we leave, we throw in their kits and we have what we need.  Have D-bag, will travel. (That's Diabetes Bag, not the current connotation of D-bag, although....yeah.  T1D is a D-bag)

 



 

Diabetes took away the functionality of their pancreas cells, and it left this in it's place. Diabetes has transformed the way my boys have to manage and maintain their bodies.  They have to have a daily reminder that they are different from their peers.  It irritates their skin under the adhesive on occasion. It itches.  It gets knocked around.  Diabetes is not a cool Transformer like Optimus Prime.  This disease costs tons of money like a Camaro, but unfortunately old Pods don't transform into Camaros.

 

 

 

 

Diabetes has been the uninvited guest in my boys' lives.  He didn't ask.  He just showed up unannounced, and like a bad in-law, he won't leave.  He's taken over a part of their lives, but not all of it.  They still play, and fight, and smile.  They still learn, and grow, and dream.  They are silly, and wicked smart, and funny. The little girls LOVE these handsome little dudes (God, help me!).  And, they still love them some Frito Pie.  (Take that, Diabetes!)

 

 

 

 

Diabetes has transformed our lives, some for the good, some for the worse.  He fills me with worry, consumes my time, and deprives me of sleep. But, he cannot and won't dominate everything. Diabetes can't stop my boys from lovin' their Mommy.  Diabetes can't stop them from living their lives; they just live it differently. Despite his best efforts, he only made my marriage stronger.  And, Diabetes can't take away the coolest dog on the planet! :)

 

Don't ask me why the photo is sideways.  Probably Diabetes screwin' with me!

 

Join us in our quest to cure Type One Diabetes.

www2.jdrf.org/goto/FuseA2Team

(The A-squared Team)

If I we can cure Diabetes, then I halt the hostile takeover of my home and the transformation of my life!

 

Rhonda



 

 

2013 Walk to Cure Diabetes

April 8, 2013

2013 Walk to Cure Diabetes

I’m a Mommy first, Nurse second, but sometimes I do combine the two roles. I’m a fix-it-and-move-on kind of gal.  Sore throat?  Tylenol and Water.  Fever?  Advil and Rest.  Scrapes and bruises?  Band-aid and Hugs & Kisses.  Fix it and move on.  It’s just how I roll.

When my sons were diagnosed with Type One Diabetes in 2012, there was no fix for me to apply so I could move on.  No amount of ice packs, Band-Aids, hugs or kisses will fix their disease.  I can’t move on from it. I can learn all about the disease and new treatments.  I can experiment with insulin dosages and particular meals to see which combo will cover them the best…today (it’ll all change tomorrow).  I can stay up late and get up all night long to manage blood sugars (high or low). I can worry until I have bleeding ulcers.  I can do a lot of things, but unfortunately, NONE of them will take this craptastic disease away from my innocent boys.

After diagnosis, I was hoping to find a 5K that would benefit JDRF (Juvenile Diabetes Research Foundation) since running 5Ks (albeit slowly and poorly) is my “thing” to do with my daughter.  It was “something” I could do. Instead, I found out information about JDRF’s annual Walk to Cure Diabetes.  Good enough!  I formed our 2012 family team, Aiden’s Army, because at the time, only Aiden was diagnosed.  I had T-shirts made, and I forged into the unfamiliar territory of fundraising. On top of being a fix-it-and-move-on chica, I’m also very much a stand-on-my-own-two-feet kind of gal, too, so asking anyone for money is difficult.  On the day I was to pick up the T-shirts from the screen printer, Asa was diagnosed, so it was too late to change the team name or shirt. Better luck next year.  I asked tons of questions of the local JDRF staff; I’m sure they were tired of me.  I asked tons of questions and got plenty of ideas from my Type One Family group.  I pestered my family, friends and co-workers ad nauseum. All said and done, Aiden’s Army raised over $2000 for JDRF.

You see, I can’t fix my boys’ disease.  I can’t take it away.  But, what I can do is work my hardest to manage it to the best of my ability.  (Manage, not control).  And, I can ‘fix it’ by supporting the efforts of doctors, scientists and researchers who are working towards a cure.  I can support this organization whose sole purpose is to find a cure for Type One Diabetes.

So, again, in 2013, we have a revamped Family Team to support JDRF.  This year, to honor both of my sons, we’re The A2 Team (A-squared).  We welcome any walkers to join our team.  We welcome any business to sponsor us.  We welcome any donations to our team and our cause.  And, maybe with the combined efforts of JDRF and thousands of families across the United States, we can see a cure for my sons before this disease kills me!

Our Dream:  No more shots.  No more finger pricks.  No more extrinsic insulin.  No more insulin pumps. No more $$$s going out the door every month just to keep by babies alive. No more bad guessing on carbs that wreaks havoc on their blood glucoses.  No more worrying every time they sleep late.  No more wrinkles, ulcers and gray hairs resulting from a deep primal worry for your children.  No more…

Support our team today.

www2.jdrf.org/goto/FuseA2Team

Rhonda

My Official Pizza Stance

April 4, 2013

It’s Official:  I hate Pizza

Anyone who really knows me knows I don’t particularly care for pizza.  I had two main reasons, then diabetes added a third reason and made it official.  I hate pizza.

 Reason #1:  Pizza is delicious, don’t get me wrong.  Melted cheese, processed meats, chopped veggies, pineapple sometimes.  It’s sinful.  However, with all that comes an exorbitant amount of calories, fat and carbohydrates.  About 10 years or so ago, I noticed that whenever I ate pizza, I felt like crap.  The taste and calories aren’t worth how it makes me feel.  I feel bloated and over-full.  I feel heavy, and I’m sure the grease pours out of my pores like oil poured out of the Exxon Valdez.  I feel dehydrated and sluggish like a snail that has had salt poured on them.  It’s just not really worth it.  When pizza is the catered lunch of choice at work functions, I often choose not to eat.  When pizza is the ‘reward’ for a busy shift, I feel a bit insulted.  I get to work hard AND starve!  Thanks.  Because of all of this, only occasionally do I want or eat pizza.  Lately, if and when I do have pizza, it’s when I make it homemade with alfredo sauce, grilled chicken and spinach.  THAT is the bomb and I don’t feel like a bludgeoned mess when I’m done with it.  And guess what, I stop after 2 slices. 

                Reason #2:  In my home, I have a pizza-loving husband and 5 pizza-devouring boys.  To say their love and devotion to pizza is in their genes is an understatement.  I think it courses through their veins.  My husband brags that he used to be able to kill an entire large pizza by himself as a 165-lb teenager….on a regular basis.  I think he still can. Frankly, I can find better things to brag on him about, but I digress.  Anyways, when we make or order pizza, you’d think that it was clearly the first and last time they’ll ever get to have pizza in their lives.  They flock to the kitchen like vultures to road kill.  I have to remind them to wash their hands as usual.  They eat until they are as stuffed as a Thanksgiving turkey.  Pure gluttony.  To make it even fatter and more calorie-laden, they want Ranch, Butter Garlic sauce and breadsticks, too!  I fight them to eat at least a little bit of fruit or something remotely healthy.   My diabetic twins, I think, are the worst.  They will eat as much as their teenage brothers if given the chance. 

                When dinner is over, they leave the pizza sitting out, so I’m left to clean up and try to dispose of the odd boxes that never fit right into the garbage can.  A couple of hours later, AFTER they’ve clearly consumed enough calories to last them all week, the “big boys” (this means my husband, too) will sneak in another slice or two even though they are still full!  Gag.  In the morning, they’ll eat the cold diarrhea-in-a-box that has been out all night.  Or, they’ll fight over the refrigerated leftovers for the next day’s lunch. And, they suffer.  Long “meetings” with the throne, upset stomachs…the whole game.  But, that’s not enough negative reinforcement to stop them.  I buy little microwave personal pan pizzas for the occasional lunch, and they fight over them and try to glutton-out on those, too.  Really?  One 380-calorie 16g of fat personal pizza isn’t enough?!  I have to be the ‘bad guy’, limit them, and make them eat other healthy things in addition to pizza.  If I didn’t, I kid you not, the entire box of 16 personal pizzas would be gone in one sitting.  Frankly, I can’t afford it on top of everything else.

My parents like to occasionally take the boys to Cici’s as a treat.  I’m pretty sure they’ve been thrown out before but they won’t admit it to me!  Living with six males has its own level of daily disgust, and this adds to it.  It’s gross to eat like that and treat your body that way.  Barf.  So, pizza is the exception in my house, not the rule. I leave the room when they are eating it.  They order it when I’m gone because I just can’t take it.  I don’t like seeing any of my beautiful men acting like death row inmates getting their last meal.  I'm sure it will be the meal of choice when I'm gone to Bon Jovi.

If all that wasn’t enough, here’s Reason #3:  With all it’s carbs, calories and fat, pizza wreaks havoc on my boys’ blood sugars.  Every time.  Without fail.  I can’t seem to find the magic formula to give the right amount of insulin to keep them in a normal range after pizza.  One dose of insulin works for approximately 3-4 hours.  I give them insulin to cover the initial blast of carbs.  I “extend” their bolus (for non-diabetic folks, that basically means I have their pump deliver part of it now, part of it later), but I can’t seem to extend it long enough.  No matter how long I extend, no matter how much insulin I give, they ALWAYS spike 6-8 hours later.  Last night, Aiden was over 200 at 8pm.  At 10pm, he was 276 at which time I gave him EXTRA insulin.  By 3am, he was mid-300s….AFTER extra insulin.  So, I had to give him some more.  Then, I was stuck awake.  This happens every time.  The only good thing is that I don’t have to worry about their blood sugars bottoming out in the middle of the night, however, now I have to worry about internal damage and bad A1Cs from crazy hyperglycemia.  Asa was low at 8-9 pm, then was spiking by 10pm.  He, too, after being low, needed extra insulin at 3am and was still in the 200s by morning.  Diabetes AND Pizza are STUPID!  They don't play well together!

Mr. Pizza.  You’re about to join the ranks of cookies and chips in my house.  You’re about to be banished.  No longer will I allow you to wreak havoc on my boys’ systems.  No longer can I allow you to deprive me of sleep due to your antics. I can’t take another minute of gluttony.  It’s just all too much.  So, my stance is official:  I hate pizza.

Rhonda

 

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