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.

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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!

Support us today!

www2.jdrf.org/goto/FuseA2Team

Rhonda

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”.

Sincerely,

Rhonda

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

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