Tuesday, November 25, 2014

Tip of the Iceberg

Tip of the Iceberg

November 25, 2014




Type One Diabetes is like an iceberg; people do not see what is going on beneath the surface just to stay afloat.

I was inspired by this photo.  First off, icebergs totally freak me out; Diabetes freaks me out at times, too, and I could not think of a more fitting analogy.  T1D does not look like much above the surface, but underneath is a massive complex disease that requires constant vigilance to stay afloat.  Faltering leads to the iceberg breaking or sinking.

10th birthday,  Oct 2014

What you see when you look at my cute boys is only the tip of the iceberg.  Two little boys who, from the outside, are seemingly perfect and healthy.  Two beautiful boys who are funny, witty, and smart.  Two little dudes who make good grades and are classroom leaders.  Two little men who want to be doctors when they grow up. Two little guys who do not have one functioning pancreatic beta cell between them.

What you see on the outside is only the tip of the iceberg.  They look so good because of what goes on underneath.  In order to keep the iceberg afloat, a tremendous amount of work, worry, blood, sweat and tears occurs under the surface.

Under the surface is a Dad who takes full duty when Mommy is away.  He handles insulin dosing, pump changes, and monitoring with a side of fatigue and worry.  He works hard to analyze the available medical coverage so we can obtain all the latest gadgets possible to keep the tip of this iceberg afloat and majestic.  Under it all is a Dad who loves his little clones and spends the majority of his annual bonus in healthcare spending and a chunk of his paycheck bi-monthly so we can take care of ourselves. 
Mommy and Daddy Pancreas at the JDRF One Walk, 2014

Under the surface is a Mother who is worn to her core with worry, analysis, late and long nights, and fear. She has to put her own care and needs on the back-burner for the sake of all of her kids and is aging exponentially form the unrelenting fatigue. Under it all is a Mommy who still gets choked up when she remembers the day she heard, “Get him to the hospital now!” and "You've got another one!".

Under the tip of that iceberg is a load of math, voodoo, science, sorcery, and luck.  Every morsel of food that is consumed must be measured and considered.  How many carbs does it contain? How many fat or protein grams? How will this impact his sugar now?  Later?  Does he need insulin for it?  How much? Every. Single. Bite.  Nothing gets zero consideration.

Yep, that's me..with bigger boobs, trying to mix the right potion to make it all go away

Beneath the exterior are the gadgets we use to help make their complicated little lives just a little easier. An insulin pump to deliver insulin constantly (basal) to keep his organs working AND when needed for food (bolus).  An insulin pump that has to be changed every two to three days and requires a biting STAB for insertion. A device that is taped to their terribly sensitive skin.
Asa, forgetting he has an insulin pump on his right arm, Dexcom on his left


Also attached to their sensitive skin is their Dexcom CGM (Continuous Glucose Monitor).  This is a tool only to help us monitor rising and falling glucose levels.  Synced with NightScout, it wakes us in the night to alert us if something is wrong…in addition to the several times per night we wake up on our own and look at the screen.  Dexcom is a tool only.  We still have to stay up at times.  We still have to use our brains to process all the information.
On a rare "quiet" night, we still wake up multiple times to check


Under the iceberg’s peak are two home glucose meter systems (complete with meter, alcohol prep pads, strips and lancets) that are used 4-10 times per day to poke a tiny hole in the tips of their fingers, draw out blood, and give us a glucose measurement for the moment…this moment only.  It changes minute to minute.


Below the surface are two tired parents, two humans functioning as someone else’s organ, two brains that have to put it all together.  Every meal. Every day.  24/7. No vacations or reprieves.  Someone is always thinking.  What is his sugar? What is he eating? How many carbs? Dose the insulin based on the preceding three questions.  Watch and wait. Unexpected and predicted changes happen daily because Mr. Diabetes does not play fair.  What works today may fail tomorrow. Levels are impacted by stress, activity, age of the pump site, age of the insulin, color of his underwear.  Some days are good and it all works.  Some days make zero sense.  Diabetes does not play by the rules; He runs his own agenda.  It’s baffling at times.

Under the surface are siblings who care and who have to be on the lookout for their baby brothers and grandparents who work hard to help. Beneath it all are school teachers, staff and nurses who have to step outside of their comfort zones, with fear, and help two little boys stay healthy and safe while maintaining a piece of their normalcy and childhood.

Under the surface are quarterly venipunctures and Endocrinologist visits, $ . Annual (and as-needed) visits to the Pediatrician and Ophthalmologist to monitor for problems and keep them healthy, $. Beneath it all is a Momma Bear who will lose her marbles if you bring your “simple cold” cooties around her vulnerable babies, because simple for you can mean pain, complications, and hospitalizations for them, $.


Under the surface, despite it all, is a Mommy Pancreas who is so proud of these tough smart little boys and who is so grateful to be able to hold them and hug them every day.  Below the surface is a Mommy who is grateful to watch them thrive and grow, listen to their corny jokes, and referee their fights.  Underneath it all is a Mommy who is both proud and saddened by how much they know about their disease already.  Under the surface is a Mommy who can’t fix it and who would give her life to keep this iceberg afloat so that all outsiders see is the tip… two beautiful, smart, funny and otherwise healthy boys.




Rhonda

Monday, November 10, 2014

Another Gray Sprouted

Another gray sprouted

November 10, 2014

Another gray hair sprouted and another year off my life.  Because clearly I didn't have enough.

Yesterday, we picked the boys up from my mother-in-law’s house where they had spent the night.  Quite often, we find their sugars a bit high after being spoiled by Memaw.  (They deserve to be kids, deserve to be spoiled by grandparents, so we just deal with it).   However, when I glanced at the Dexcoms (Continuous Glucose Monitors), the last reading showed the glucoses levels quite normal.  It had not detected the glucose level of the boys in a few minutes however because they were out-of-range, so there really was no telling what the current glucose was.

Asa & Aiden were outside playing and were tickled pink to see their Daddy’s new truck. Activity and excitement can drive a normal glucose level down.  Or up…depending on the day, barometric pressure, last meal, and color of their socks.   (I know…that makes it simple, right?)  Regardless, I told Aiden to go inside and gather his belongings and get his shoes on.

A few minutes later, I walked inside to check on them, and all I saw were feet and legs laying in the entry way.  Dead-like.  Motionless.  Passed-out like.  My instant thought was, “Oh CRAP!  He passed out!  Where’s his stuff?  Where’s the Glucagon?”  I called his name as I approached him and he didn’t respond. When I rounded the corner, I saw the little turkey quickly close his eyes.  He was faking!

What was he doing?  Being a boy.  Pulling a trick on his Mommy…or Daddy…or brother…or grandparents…whomever was first to arrive.  Unfortunately, it was me.  He scared the life out of me and I was less than impressed. So thankful he was ok and playing, but now ready to kill him!

Proud Mommy moment…in a tone louder than usual (emphatic but not yelling), I told him he could pass out if his sugar was low, and that’s what I thought had happened.  Told him he scared me to death.  He apologized.  No more passing out jokes or playing dead allowed as long as Diabetes is a barnacle in our lives!

Drop-kicking him wasn't an option. So, clutching my chest, I went back outside and told my husband we were going to have to give Aiden up for adoption lest he kill me!  When I told him what I saw when I went in the house, his eyes about bugged out of his head.  So, yeah, my reaction was legitimate.  I think Jerry would’ve had heart failure, too.

Needless to say, I don’t think I’m going to make the “live to 100” goal I’ve had forever.  Diabetes and my kids are making sure of that by regularly depriving me of sleep and taking years off of my life in a single moment. At this rate, I should’ve died last week.

On the way home, I stopped and bought a new bottle of hair color to mask the new gray hair I sprouted.  As long as I have spunky little boys and Diabetes, I'll keep Miss Clairol in business.


Rhonda

Monday, October 20, 2014

Epic 4-0

Epic Bday Weekend

I’m a sucker for birthdays.  I love to make someone feel special, and I love a good celebration.  I wanted my 40th to be big time!  Not because I’m a selfish brat, but….Because, life has kicked me down the past couple of years, and because…aren’t we supposed to be grown-up after 40?  I wanted to send my thirties off in style! I was not disappointed.  My birthDAY turned practically into my birthday week thanks to some cool co-workers, friends, and the Man.

I worked Tuesday night, and when I went to check on my co-workers in other areas, I babysat in the nursery so the nursery nurses could take care of stuff.  Usually they’re quite quick, back in 10 minutes or so.  10 minutes passed.  I called out to ask someone a question and they weren’t “available” to talk to me.  5 more minutes passed and the one of the nursery nurses returned but thought of something else to do, so she ran back out.  Don’t get me wrong, I don’t mind helping anyone, but after 20 minutes, I started wondering, WTF?  WHERE IS ANNA?  I called around to find her but nobody knew where she was and one person giggled at me.  Huh?  What’s so funny? When I left the nursery, I found my co-workers had decorated the break room and stocked it with yummy healthy food and pumpkin stuff! 
Work Birthday party


They REALLY surprised me!  In the past, I have seen someone carrying something in suspiciously, but not this time!  Back story…they forbade Anna, who is usually very efficient and fast, from returning to the nursery until they were done.  I was held hostage!

My friend Melissa messaged me and told me she was coming to pick me up on Thursday.  How to dress.  What time.  That’s all I got.  She arrived with mischief in her eyes.  She took me to a restaurant where we waited patiently for others to arrive. Because of the restaurant, I guessed who one attendee would be, but I really didn’t know who else was coming.  After a few minutes, 3 more co-worker friends arrived, bearing balloons, gifts and wine.  We were set!  I was quite surprised and delighted.  My “Pool Crew” all came out to celebrate with me! 
The Pool Crew


I knew my husband was making plans for me on Saturday.  I wanted NO details at all!  I did tell him that my birthday wasn’t complete without time with him, and initially we thought we would have a private date on Friday, but we moved it, due to Diabetes and babysitting issues, for the next weekend.  I was very happy with that given we had a plan!

Friday was my actual birthday.  Present #1 I requested:  Sleep.  I slept in, ran some errands, got a pedicure and manicure, then I watched a marathon of Parenthood.  Basically, I was quiet and did whatever I wanted to do, and it was fantastic!  My big boys had plans, so when the little boys and the Man got home, we had a small family dinner and brownies!
Small family dinner with brownies

Saturday.  The Big Day!  After working hard for months to convince me he didn’t give a crap, Jerry pulled together an amazing night for me!  We slept in a bit, and I got up and ran errands.  He told me to be ready by 4pm, so I was mostly ready by 3:15pm.  I sat around in undergarments and a robe only when my first friend arrived!  So, I had to dress in a hustle!  Birthday surprise:  The first guest was my friend who is ALWAYS late!

The rest of my crew (didn’t know who all was coming) arrived just ahead of a limo.  So. Fun.  The limo was stocked with adult beverages, and we took a long ride to a dinner location.  I felt like an infant riding backwards in her car seat because I could only see life after it had already passed by. Jerry sent us to a fancy steakhouse, very upscale, that I had never been to before.  I think he forgot who some of my friends are because immediately, the silliness and noise started!  We were having a ball, complete with dares and pranks. 
Limo crew!


The face a guy made when I went and kept his wife’s seat warm while she used the restroom was priceless!  He backed away from me like I had Ebola!  Anyone who looked like they had a stick up their butts was forced to come and take a photo with me and smile!  The Wine “Somalia” didn’t like that I asked her, “Somalia?  Like pirates, Africa, and AIDS?”  Whatever.  Touted herself as  a wine expert who doesn’t drink wine.  How does that even work?

To make it even funnier, towards the end of the evening, a manager-looking lady thanked us so dearly for our patronage and then politely asked us to leave.  CRAP!  We were ruining the atmosphere of the other patrons.  Well, I know when I’m wrong, so I was like, “Pack it up girls!  We’ve been kicked out!” Long story short, we weren’t kicked out and she didn’t even work there!  They pulled a fast one on me and I FELL FOR IT!
Funny prank, great joke!

Upon leaving the restaurant, I was blindfolded.  Oh crap.  After arriving at our next destination, I had to pee SO badly!  I begged them to take me first to the restroom.  I am not graceful so I got out of the car slowly and was led inside.  Someone took my hands and placed them on themselves right as my mask was removed.  I was led to rub down some hard body at La Bare!  Freakin’ hilarious!  I screamed, and said, “I have kids your age!”  Felt a bit pedophilish.  Found our VIP table.  Hit the stalls. Now, I can think.
Holy cow!

Well, what happens at La Bare stays at La Bare….mostly.  Probably the funniest story was when a dancer grabbed my friend and my heads, pulled them back, then accidentally conked them together.  It was supposed to be sexy, but we wound up being “head-bangers” instead!  Apparently I have an eye socket of steel because she had a knot!  The poor guy was mortified, but I let him make it up to me with a lap dance.  I’m a giver like that. 

I’ve never been to a male strip show.  First time at 40!  Obviously, it’s a different vibe than when men go see women strip.  Girls are there to have fun.  Wasn’t a big fan of being touched or touching, but nobody gauged my eyes out when I got married! I love me some pretty men! They had to make me touch!  All the dancers were nice looking, but there were no blondes…I’m a sucker for blondes.  I did have to give a couple of obligatory tips to the guy who danced to Bon Jovi, one who danced to Bryan Adams, and the soldier who served in Iraq and Afghanistan.  For real, though…I have to support our troops. Again, I’m a giver like that.

After we left the club, the plan was for the limo to bring us home.   Remember, I’ll get my man-date next weekend.  However, the blindfold was slapped back on me, and we stopped very soon. WHAT?  We did not make it home from Dallas to Crowley THAT FAST.  I was again led out of the limo, posed for some pictures, and guided by the hand somewhere.  It’s a miracle I didn’t trip and fall.
When the mask was removed, I was in a nice hotel suite and my man was waiting for me!  BAM!  How’s that for the perfect end to the night!?  Ladies don’t kiss and tell, but I’ll assure you, it was perfect.
Surprise!  Your man is waiting!


On Sunday, we had our October family birthday party.  I try to get the family all together once a month to eat and visit, so this was the perfect time.  Just like usual, we captured most October birthdays (there are 7).  My daughter had made the MOST PERFECT cake for me!  It was such a nice top off to a great birthday week/weekend.
Most perfect Birthday cake ever!

Mind you, I’m not a complete brat.  I don’t expect this level of celebration annually.  But, this was a big one. This one was important.  And, my husband pulled out all the stops.  He clearly is one of the most secure dudes on the planet because he doesn’t blink over my JBJ love, and he arranged for my VIP treatment at La Bare! He worked so hard to pull my friends together and plan it all so I would have a perfect night, and it worked! He knows me like the back of his hand and he knew what would entertain me the most and make me the happiest!  He rocks!  It could have only been better if JBJ himself got on stage!  Of course, I may not have survived that.

Sunday night, Diabetes apparently was FED UP with me not paying any attention to Him.  So, both boys were wicked high from 9pm on.  Extra insulin only kept them steady (at a too high level) instead of bringing them back down to normal.  I fell asleep by 9pm, and I was awakened three times by 10pm.From them on, I was awakened at least every hour or two.  Diabetes is a demanding brat! 

With all the crap I deal with in my life, this was a much needed break!  I thought very little of Diabetes while I was out!

A newer friend who went along with us gave me the sweetest compliment that I think caps this blog off well:  I love your friends. They are so fun and they dote on you when you're not around. I think that's true friendship and proof of how awesome you are. So grateful for the invite. It was indeed epic!!!

Thanks to everyone, especially My Man, who made turning 40 painless!  I’m usually good with words but words cannot express how truly grateful I am and how amazing you guys made me feel! 
LOVE this guy!



Rhonda

Saturday, October 11, 2014

REM is Over-rated

REM is Over-rated

October 11, 2014

Any parent of a T1D child can tell you, sleep often comes at a premium.  A typical night for me used to involve checking the boys’ glucose levels at their bedtime and again at my bedtime.  Depending on those results, the cycle of the moon, what they ate for dinner, and the color of their underwear, I would determine if and when to check them again throughout the night.  Typically, I woke up at least once to use the restroom at which time I would go ahead and check on them.  Often times, I was forced to set an alarm for every 1.5-3 hours to check on them.  It’s almost like we’re in a perpetual newborn period, waking up every couple of hours, sans the newborn crying.  That’s replaced by Mommy tears.

Perhaps someone could argue this is or was overkill, however, too many times, I caught a crazy high or a dangerous unexplained low….a low that could have killed them.  So, their tiny lives are in our hands; we’ll do whatever it takes to keep them safe.  “Dead in Bed” is a rare but real and scary phenomenon.  Simply put, your body cannot live if there is not enough glucose in the blood stream, thus if a low went undetected during sleep and continued to drop, the T1D kid could die.  I don’t wish that on anyone, and I don’t think any of my family or friends want to find me rocking in a corner, sucking my thumb as I pluck my hairs out one by one…. Yeah, that’s pretty much what I think would happen if something happened to one of my babies.
Look at those faces!  Do you blame me?!

Recently, we began using the Dexcom Continuous Glucose Monitoring (CGM) system.  Unfortunately, the range of the CGM to the actual boy (receiver to transmitter) was too far away at night between our bedrooms, thus it was essentially useless to us to monitor the boys easily at night.  Well, unless I wanted to move into the living room on a permanent basis or put these nearly 10-year-old boys back in cribs at the foot of my bed.  Don’t think I didn’t consider it.

When computer geeks’ kids get T1D, they develop cool programming to make the Dexcom CGM readings feed over the net.  Some banded together and created Night Scout. Long story short, I looked it up and put Jerry on a mission to make it happen.  He tossed a few options my way…Options, technology and verbage that was WAY over my head.  My answer, “I want to be able to roll over at night and see their sugars so I know they’re ok”.  He made it happen. 
Much to my chagrin, every night does NOT look like this!


All that background for this:  The CGM and Night Scout has been a fantastic, albeit imperfect, solution to help us get a few more winks at night.  It’s so refreshing to be awakened by an alarm if someone is too high or too low or to roll over, see all is ok, then snuggle back up to the man and fall back asleep.

(My Mom fell in love with it when she stayed over with the boys while we took a short vacation.  And, I worried about them less knowing an alarm would wake her up if necessary.)

As Diabetes would have it, He still demands attention now and then.  Some nights, the alarm is going off like crazy which means I have to wake up and make the mouse cooperate with my confused fumbling hand to silence the alarm.  Afterwards I have to check them and intervene.  Fortunately, that is the exception, not the rule.

Last night was an exception.  After a busy day at the Zoo, where Asa went low for 30 minutes (He was 51 after 25 grams of carbs and 20 minutes; he got a "free" ice cream which was fine with him!), we had a heck of a night with Aiden.  He was high around 9-10pm, so I gave him insulin to bring his glucose level back into range (“correction insulin”). 

Around midnight, the alarming started.  63 and dropping. I gave him a juice box which he sucked down in his sleep.  Asa was 93, so I gave him half a juice box just for good measure lest I be up in an hour or two doing the same thing for him.

An hour later, I snapped awake to make sure his level had risen well on the monitor.  Good.  Dozed back off.  An hour after that, repeat of the first scenario.  66 and falling.  Another juice box. 

About the time I dozed back off, Jerry snapped awake and saw the low number, which woke me up and I assured him I’d already intervened. He did that twice during the night.

 (Side note:  Since the CGM monitors the glucose level in the interstitial fluid between cells, it doesn’t reflect a rise or fall quite as fast as blood.  Thus, the monitor won’t show the rise in the first 15 minutes like the blood does, so I wait 30-60 mins).

An hour later, both boys were steady.  By this time, it was 4 am.  At 0530, the alarm went off again.  55 and dropping.  Knowing I had to rise for work in 30 minutes, I got up.  This time the carb of choice was chocolate milk.  He showed steady around 115 by the time I got out of the shower. 

As one may have deduced, I was basically awakened every hour from midnight to 6 am either by an audible alarm, by my Mommy paranoia who needed to see that things were ok, or by my husband’s startle and shake.  There’s really no solid explanation as to why Aiden couldn’t keep his sugar up overnight.  Diabetes often defies logic.  That said, it must have been related to the level of exercise we had at the Zoo. Or, it could have been too much correction.  Or, the color of his shirt.  Who knows for sure?

Dreams?  Who dreams?  What is REM sleep again?  Who needs it?  Diabetes thinks it’s over-rated.

Yes, there are WAY worse diseases.  Yes, it could be worse.  But, we sure could use a cure so 
Mommies and Daddies like me can rest easy and not worry about our babies’ lives.  Every. Night.
Support us for a cure today!



Rhonda

Sunday, September 28, 2014

Repost: Jace-isms, from October 2006

Repost
 9/28/2014

My boys are growing so fast, and so much has changed with them over the years.  I know when I open my eyes, they'll be gone.

I wasn't wise enough to write down the great stuff my daughter said, but by the time the little ones arrived, I came up with the idea to blog.  In this blog, my boys were 3 and 2.  Now, they're 11 and almost 10.  I'm sure they'd be equally amused and mortified that I'm posting this.  Yet, I find it a good exercise in nostalgia, humor, and appreciating them at their unique and special ages.

10/30/06

As I work to gather more stories to continue my "Gotta Love This Job" series, I've decided to start another series.

Children say the funniest things…sometimes at the most opportune or inopportune times….and their perspective on things is magical.  My three-year-old son, Jace, has been a good source of entertainment lately.  Three is a very trying age, but three-year-olds are fabulous at the same time.  Jace says more and more things, and his grammar errors are comical.

1.     Like any other child I've ever had, Jace says, "I want to hold you!" when he wants to be held.  It's funny to say, "Okay," then sit on his lap.
2.     Last week, someone in my house (who shall remain nameless) expelled some flatulence accidentally.  With a very puzzled look on his face, Jace looked up and asked, "You poop you-self?"
3.     Along those same lines, my husband, the flatulence expert, expelled some gas one day (as he does every day multiple times).  My son, Kyle, who was then about three or four-years-old, very puzzedly asks, "Poo-poo in there?"  He's never lived that one down.
4.     Jace and his twin baby brothers have a fascination with turning the faucet on and off while they are in the bath tub.  I let them play while I gather things up.  A couple of weeks ago, I heard the water running and lots of giggling.  I walked back in to see all three of them projecting their "family jewels" under the running cold water.  I ask, "What are you guys doing?"  As the spokesperson for the group, Jace exclaims, "We're ticklin' we're wieners!"  All I could do was laugh and walk away.
5.     Jace and his brothers were again in the tub and I was in the shower (with a glass door).  Daddy was in the bathroom to bathe them, but thought he'd try to play a joke and make me laugh.  So, he put my underwear on over his clothes (looking quite comical as he did it.)  Jace is learning boundaries and understanding possession, so he was flabbergasted.  He "told" on his Daddy by saying, "MOOOOOOMMMMMMYYYYYY!  He's touchin' your underwear!"  Oh my goodness!  I bet someone listening from the outside who didn't see what was happening was a little scared of what was going on in there.
6.     Jace the Parrot:  When pulling out of a parking space at the Fire Mountain, a lady decided to go ahead and try to hit us then honk very loudly as if we were the idiots!  My docile husband rolled down the window and, stating the obvious, told her she was a "Stupid B*&ch".  A few days later as I drove Jace to his Christian preschool, we passed by Fire Mountain.  We were talking about sweet things like how much Papa and Mommy and Daddy and Grandma loved him when he suddenly exclaims, "Supa Bish!"  From that day forward, every time we passed Fire Mountain, he repeated that.  I told him and told him not to say that, but I think he thought that was the restaurant's name.  I finally got smarter than him and distracted him with the school buses across the street and he forgot.  Gotta watch what you say around that kid!
7.     Finally, all three boys were in the tub again.  Jerry was sitting on the commode with the door open watching them while I got ready for bed.  As a joke, he made a loud grunt to pretend he was straining while he worked on his task.  Jace jumped up!  He looked at his Daddy, and took a deep breath in.  Then, he shouted, "Daddy, it's coming out!?!?"  He was just cheering his Daddy on like we try to cheer him on during our potty-training quest.  Maybe one day he'll actually poop in the potty like Daddy!

With as smart and entertaining a child as Jace is, I'm sure it won't be long before I add more.  I hope you enjoyed.

                                       Jace 0906

Rhonda

Thursday, August 28, 2014

Mirror, Mirror, On the Wall

Mirror, Mirror, On the Wall

August 28, 2014

Hi.  My name is Rhonda, and apparently, I used to blog here! 

Sheesh! Has it really been six weeks.  Trust me, it’s not for lack of material.  Rather, with the kids out of school, I’ve been quite busy. 

I took a short vacation with Mom, Niece and Daughter.  I spent 9 days working Texas Lions Camp for Diabetes.  Of course, I reprised and maintained my role as summer Cruise Director.  And, I spent the lot of August getting five boys ready for school.  Senior pictures, clothes, shoes, supplies.  As if I didn’t have enough to do, Mr. Diabetes requires I now have special meetings with the teachers and nurses on top of already attending 6th grade camp and Meet the Teacher night. In the meantime, I have to work to pay for all of it, and somewhere in there…still be wife and pancreas.  Occasionally I get to sleep. There’s rarely a dull moment, but I digress.

Ok, below is what I’ve been thinking about, and I think I would struggle to find a Diabetes parent who doesn’t fully understand what I’m saying.  Disclaimer:  This is not a fishing expedition for compliments.  It’s simply how I feel.

We celebrated our second 2-year-Diaversary in August, which means for 2.5 years, I’ve been going at the Mommy-Pancreas bit.  It’s a role I didn’t audition for or seek, but I won the part…the lead…twice. Yea, Rhonda!

I was 37 when Mr. Diabetes crept into our lives.  Wait, forget I said that.  Well, remember for now, but forget later.  It’s important for my point.

I had my daughter, my first child, when I was 17, thus before Diabetes snuck in, we were often mistaken for sisters since there really isn’t much of an age gap there.  She’s so much more beautiful than me, but I know I’m biased.  So, I held on to 29 for quite awhile. 
My daughter & me in July..don't be deceived by the great makeup and suspected photoshop


On my first birthday after Diabetes diagnoses, I went ahead and upped my age to 35.  Since my daughter was getting older, it was getting a little weird to explain I was 9 when she was born.  Folks weren’t buying it anymore.  Besides, suddenly, I didn’t feel 29 anymore. I felt and looked 35. 

So many nights staying up to give carbs and wait for a glucose level to be safe enough to sleep.  So many nights giving correction insulin for a high sugar, then having to get up again in 2 hours to make sure it wasn’t too much (and 2 hours after that).  So many nights staying up to do “basal testing” to make sure the underlying insulin rate was accurate.  So many nights awake, wondering, worrying, sometimes tearful.

So many days stressing about things that had never crossed my mind before.  What’s the Carb Count in that roll?  Do I have enough juice boxes?  Does everyone know how to use Glucagon in case I’m not around? When is the next appointment? Are my other kids getting enough of my time and attention because so much of me HAS to focus on keeping my twins alive and healthy? How bad am I screwing this up?  Am I doing enough?

It’s a pain and a worry that originates from the deepest part of my core….a part I really didn’t know I had until Mr. Diabetes invaded our perfect little world. 



Mirror, Mirror on the Wall.  Who’s the tiredest of them all?


So, now I look in the mirror and I wonder who that is staring back at me. I almost don’t recognize her.  Two years ago, she was 29.  In six weeks, she’ll be 40. 

 I see insurmountable fatigue.  I see dark circles that no concealer can hide because it’s more than skin deep.  I see pain and worry deep in my eyes.  I see a 40-year-old woman where a 29-year-old (for the 9th time) girl used to sit.  It’s a little depressing.



That’s how quickly Diabetes ages us.  At this rate, I’ll be dead in no time, but I’m not allowed to die.  My boys need me.  My husband needs me.  By the time my boys graduate, I’ll look 80, I’m sure of it.  It’s not enough for Him to rob my boys of a pain-free worry-free childhood. He has to take his physical toll on me, too.  You suck, Mr. Diabetes.  (Wait.  I apologize.  Please don’t screw up my night now!)

I remind myself regularly that this could be so much worse.  I know it.  But, the level of work, science, thinking, voodoo, planning, sorcery, worrying, and math involved just to keep my babies alive and healthy is exhausting.  It’s not to be discounted or undermined on any level.   It’s tough. 
These guys are WORTH every wrinkle, bag, dark circle and flaw!

This is the hand I was dealt, and I’ll play it the best I can…even if it means I’ll get the Senior Citizen discount at 45!

Support us for a cure today!


www2.jdrf.org/goto/FuseAATeam

Rhonda

Wednesday, July 9, 2014

Dirty Looks

Dirty Looks

July 9, 2014

In my family, I was the third child, the youngest.  I have a sister who is four years older, and my brother is 11 months older.  (Yeah, my parents wasted no time!)  When my mom was pregnant with me, my dad swore I was another boy and refused to even discuss girl names with my mom.  Joke was on him.  He was a bit surprised when I emerged, three weeks early, distinctly lacking a penis! (I had stuff to do, and sitting in the uterus getting fat wasn’t one of them). 

Since my sister was SO much older than I, she felt she was too big (*read, too good to…*) play with me.  By process of elimination, I played with my brother.  We play GI Joe, He-Man and Cars.  We shared a room until I was about 8. When I was about 9 or 10, I traded in my powder pink bicycle, complete with basket and banana seat, for a boys’ BMX.  Yep, I was that girl outside riding bikes and jumping ramps with my brother, his friends, and the neighborhood boys.  From the get-go, I learned how to get along with dudes!

I always kept a core group of close female friends, but I was always friends with guys, too!  I got them.  I understand them. I like them. They entertain me.  Our brains work alike. I’m very analytical and logical.  I don’t like to talk too much. I’m direct and honest.  And, I despise playing games.  What you see is what you get.  I’m friends with my husband’s friends.  I’m friends with my friends’ men.  I get along well with the male physician staff.  Guys come to me to talk about woman problems, hoping I can offer insight.  In many great man-woman debates, you’ll find me taking the guys’ sides. I’m just really a dude in so many ways. I think my dad may have been onto something when he suspected I was a boy!

Here’s where the problem arises.  Way too many women do not understand a woman who is friends or friendly with men.  For me, they’re so much easier to get along with.  These women’s jealousies and insecurities get in the way of clear vision. Similar thing happens on Facebook where women get upset if a dude is talking to me, reconnects, whatever. The ladies who know me would trust me overnight naked alone with their men.  Besides the fact that I just get along well with men, they know me and how my brain works.  They know I believe in strict rules in relationships…it’s black and white, no blurring of the lines. They trust me whole-heartedly because…

Over fifteen years ago, I met this guy
Didn’t take long to figure out he was the one.  It didn’t take him too long to figure out that he’d met his match.  Here was a smart woman, who didn’t need him, and whose brain did not operate in the stereotypical womanly ways.  No games.  Straight-forward. He’ll tell you himself, I’m a dude in a woman’s body, which is one of the reasons he loves me.  I understand him; he understands me. We married 16 months after meeting.

If I haven’t made you sick by mentioning it before, then get the barf bag ready.  This guy is the one for me.  I’m in love.  No doubt.  Are there days I want to choke him out?  Absolutely, but I can’t imagine my life without him.  He’s the only one. The only guy who stands the REMOTEST chance against this guy....

 Is this guy...
…and since we all know that’s not going to happen, I think he’s safe.

Now to my point, because of my friendliness, camaraderie and friendships with guys, WAY too many times, I’ve been given dirty looks by other women.  Classic example happened recently.  When I went to Kerrville in April for a Diabetes retreat, I met a few other families…one dad in particular had a girl about my boys’ age.  I’ll call him Mr. Nice Guy. We said hello, talked Diabetes, etc.  His wife wasn’t with him, and my husband wasn’t with me. 

Fast forward to June.  Jerry and I went to a Diabetes Conference in Austin. I walked right up behind Mr. Nice Guy while checking in.  He had his wife, Mrs. Not-so-nice with him.  He recognized me, we chatted briefly, introduced him to my husband, explained how we knew each other, etc….and we moved along with our day.  Well, Mrs. Not-So-Nice gave me the evilest look.  I just ignored it.  I’m used to it.  Over the course of the day, we saw them a few more times.  Each time I’d offer a friendly smile or say, “Hello again”, and each time I received a snarl from Mrs. Not-So-Nice.  I found it funny when finally MY husband said, “Why does she keep looking at you like that?!”  He noticed.  It was so flagrant.  I told him I was used to it, at which time Jerry added, “Some women just don’t understand that you just get along with men well, do they?”  Nope.  Story of my life.

I used to let those types of reactions bother me, but I don’t now.  Rather, I recognize it as that person’s insecurities, because if she knew me, she’d know there’s not a chance in Hell I’d give him the time of day unless he suddenly morphed into this guy...

 or this guy....

 I love me some pretty men,
..I mean, nobody gauged my eyes out when I got married, and I like talking to men and hanging out with men, but there’s only one man in my life.


So, if you haven’t been around me much, and didn’t know this about me…relax.  I have a man who I’m madly in love with.  I don’t want yours.  I’m not a home-wrecker, nor do I have the time and energy to lie, cheat or train another one!  But, I will be friendly and sometimes flirt to boost his ego.  That’s all it is.

So, no more dirty looks!   Can’t we all just get along?


Rhonda  

Friday, June 27, 2014

So Many Questions

Questions

6/27/14 

For anyone who thinks managing Diabetes just means taking a shot with meals, let me introduce you to the abundance of questions that run through my mind at any given moment.  These questions are on top of all the questions we ask ourselves for parenting in general.

Any given Diabetes scenario is plagued with tons of questions to help us make the best management decision.  I'm sure my D-parent friends can add even more?

High Sugars:
Why is he high?
When did he eat last?
What did he eat last?
Is his pump site ok?
Where is his pump site?
When was his site last changed?
Does he have Ketones?
Did I correctly dose the insulin?
Is the insulin expired?
How long ago was his last insulin dose?
Does he need more insulin?  Could I or should I have timed it differently?
How much correction do I need to give him?  (Followed by complex mathematical formula)
Did I give him enough correction?  
Why didn’t the last dose of correction work? 
Do I need to adjust the ratio for this meal?  Correction?  Basal?
Should I just give him an extra shot of insulin to bring it down?
Is he getting sick?
Am I responsible for destroying his body?
And, the ever so critical “What day is this?”

Low Sugars:
Why is he low?
When did he eat last?
Did he finish his meal?
What did he eat last?
Has he been exercising?
Did I overdose his insulin?
How much insulin is still “on board” and acting?
Could I or should I have timed it differently?  Given less?
What was his sugar to start with?
How best should I treat this to rapidly bring it up and keep it up?
Is his basal rate too high?
Deciding question:  “What color are his underwear?”

Hemoglobin A1C results:
What did I do wrong?
What can I do better?
What needs to change?
Does he need more insulin?  When?
Is he growing?   Not eating right?
What diet and exercise plans can I refine?
Am I destroying his body?
Am I failing at my job?
Always pressing: “Will there ever be a cure?”

Pump Site Changes:
How many days has he had the current pump in place?
Where were the last two sites he used?
Are any of the sites bruised?  Rashy?  Lumpy?
Which potential site looks the healthiest?
Are our skin barrier/protection measures working to minimize rash?
Can I convince him to try a new site?
When will he be due for another pump site change?
How much insulin should I fill it with (in order to minimize waste) considering upcoming activities and days of expected use?
Has he been putting lotion on his sites like I told him?
What’s his current glucose level?
How much insulin do I need to start him with on the new pump (to minimize post-pump-change highs)?
Did the pump function properly and is the cannula in place?  (This is very tricky with crappy eyes)
Did I squeeze hard enough to minimize his pain?
Is he really hurting or just lashing out at me and making me feel guilty because he’s tired of all of this pain?
Oh-so-Important:  “Did I hold my mouth right?”

At Each and Every Meal:
What’s his current sugar level?
How many carbs do I anticipate he’ll eat?
How much insulin does he need for pre-meal bolus?
How many carbs did he actually eat?
How many carbs are in ____  ?
Did he finish all the food I dosed him for or does he need more insulin?
How many fat grams did he eat? 
How much protein did he eat?
Was it enough protein to keep his glucose stable?
Do I need to add insulin later for high fat/protein meal?
How much insulin do I need to add more his fat/protein content?
How active will he be after this meal?
Will he need a snack later?
Is he listening to me and learning as I process and explain all of this?
Don’t forget:  “What’s the price of tea in China?”

Nightly:
Does Diabetes want to play fair tonight?
How much sleep will I get tonight?
What’s his sugar?
What pattern do I anticipate his sugar will follow overnight? (Considering how the glucoses have been all day?  What he ate last? When he ate last? How long do we plan to sleep in the morning?)
What time do I need to interrupt my sleep to recheck him?
How many times do I need to interrupt my sleep to recheck him?
Tie Breaker:  “Did Mr. Diabetes hear me curse his name or brag today?”

Am I being a good enough pancreas?  Am I being a good enough Mommy?

Needless to say, my head is swimming the majority of the time, and I'm exhausted.

See.  It’s not so simple. Every day. Every Meal.  Hundreds of questions and decisions.
Support us for a cure today! JDRF One Walk, The AA Team

Rhonda

Sunday, June 22, 2014

Sweet Child of Mine

Sweet Child Of Mine

June 22, 2014

My husband and I attended the JDRF Type One Nation conference in Austin over the weekend.  We had a nice getaway and the conference was great!  We enjoyed connecting with other Type One families and learning more about what JDRF is doing to transform Type One into Type None.  There are great treatments and potential cures on the horizon.  It was a great reminder as to where our money goes and why we donate, fundraise, and Walk.

One of the coolest things about attending was being recognized for my book, Mommy Can't Fix It,  and my blog by complete strangers.  My message is getting out there, reaching people, and impacting their lives!  Score!  One lady even remembered my Bon Jovi love!   Tee hee…it’s legendary!  J

Needless to say, attending the conference sparked a few blogs in my little brain.  I’ve been on a blog block lately, partly because I’ve just been so terribly busy with work projects, kids and being a substitute Mommy Pancreas.  Those blogs will be coming.

Strangely, however, I woke up to this blog swarming around in my head this morning.  I haven’t heard this song in awhile. I haven’t thought of this song in awhile.  I don’t recall dreaming about it either.  Rather, I woke up, and this song, complete with lyric changes was swimming through my consciousness, so I figured I’d better write it down.

Sweet Child of Mine

He's got a smile that it seems to me
Reminds me of Pre-D memories
Where everything was as fresh as the bright blue sky

Now and then when I see his face
He takes me away to that special place
And if I think too long, I know I’ll break down and cry


Whoa, oh, oh, sweet child o' mine
Whoa, oh, oh, oh, sweet love of mine

He's got eyes of the bluest skies
Diabetes has filled with rain
I hate to look into those eyes and see an ounce of pain




His hair reminds me of a warm, safe place
Without D by his side
I wish for the sticks and pain to quietly pass him by

Whoa, oh, oh, sweet child o' mine
Whoa, oh, oh, oh, sweet love of mine

Where do we go?
A new way to live now
Oh, let’s find a cure now

Where do we go?
(Sweet child)
A new way to live now
Ooh, please don’t go low

Get it.  They're sweet and "sweet".  J

Please help us help JDRF find better treatments and a cure!



Rhonda

Sunday, May 18, 2014

Diabetes Blog Challenge Day 6: Saturday Snapshots

Diabetes Snapshots



Saturday Snapshots - Saturday 5/17 . 
Back for another year, let’s show everyone what life with diabetes looks like!  With a nod to the 
Diabetes 365 project
, let’s grab our cameras again and share some more d-related pictures.  Post as many or as few as you’d like.  Feel free to blog your thoughts on or explanations of your pictures, or leave out the written words and let the pictures speak for themselves.


In a previous blog, __Hidden Diabetes in Pictures__, I shared pictures of my boys.  It was one of the more tearful blogs I have written seeing how innocent they were before Diabetes, how unknown the storm was that brewed in their bodies.

A little late (as I have been all week...work schedule and computer virus impeded my blogging), I am answering the blog week challenge for Diabetes Snapshots.  Instead of recollecting how things were before Mr. Diabetes plopped his big butt in the middle of our lives, this blog is about the daily grind. 

In a perfect world, other D-parents will feel a little more “normal” and those who do not live with Diabetes will learn a little and perhaps be inclined to Walk with us or donate to our cause!


Now I begin…
Every time we check a blood sugar, I record the results on these clipboards...one for each boy.  I average, look for patterns, and decide how to adjust to Mr. Diabetes ever-changing rules in this game.  Pink pisses me off; yellow worries me.  As you can see, obviously my emotions stay on a roller coaster!



 
Once I wake the boys up for school, I set up their supplies to check their sugars.


Tiny fingers, drops of blood.  Every day, 6 to 12 times per day.


After checking sugars, counting carbs and dosing insulin, we get to eat our breakfasts.


This is the inside of their D-kits that have to go everywhere with them.  When they eat, I get their kits ready for school. So, on top of book, binders and backpacks, my boys carry a kit that holds all the essentials to keep them alive!

A small selection of ALL the supplies that are used EVERY. DAY. to keep my boys healthy and alive.  If they aren't used daily, they are required to keep for emergencies.  All of this is easily $2500 worth of stuff, and there is more unpictured.

Omnipod insulin pumps...in action on a cute little thigh!  Not sure what we're going to do when puberty hits and they get wicked hairy!


Diabetes trash everywhere


Despite the crappiness of dealing with Mr. Diabetes day in and day out...I get to keep my babies.  They are alive and well and can dig in the mud!


After a busy day at school and play, we rest.  Now, Mommy and Daddy get to figure out who is who in the night!

 
Support us in the JDRF One Walk.  www2.jdrf.org/goto/FuseAATeam
 
 
Rhonda