Saturday, October 27, 2018

Half Time

Half Time

I don't have a lot to say here as this just popped into my head.  Just wanted to share. Due to work and starting a Doctoral program, my time for leisure and blog has been limited.

The twins celebrated their 14th birthday on 10/21/18.  It's so hard to believe they're already in the throws of their teenage years.  I can't believe it's been this long, yet I can hardly remember a time without them nor can I imagine a life without them.  My youngest, my babies, aren't really babies anymore!

Since they were diagnosed with T1D at age 7, now 14, they've spent nearly half of their lives with T1D.  They are doing amazingly well, doing a ton of self-management.  At this point, we're just the bank to pay for it all and the supervisors.  Can't complain as the last two visits to the Endocrinologist have yielded record low Hgb A1C levels!  They've learned so much along the way and are meeting the challenge head-on, better than many adults!

We're thankful for all of the medical advances to promote healthy living and prolong the lives of those with Type One Diabetes.  It used to be a death sentence as little as 100 years ago!  (I guarantee if something happened to these boys, heck, or any of my kids, it would be the death of me!  Selfishly, I need them here for a long time because I plan to live to see 100!).

We're thankful for the technical advances that make life easier and keep the boys safe.  We're continuing to support JDRF and keeping our fingers crossed they will see a cure in their lifetimes and this disease will be prevented in future generations.

Half time. Half the time of their lives living with this craptastic disease.  Shortly, we'll have to say they have lived with T1D longer than not, and that's humbling.  One day, we'll be able to say they used to have T1D!

In the meantime, we celebrate their lives and health.  They are handsome, funny, and oh so smart!  They have so much to offer this world, and we refuse to let T1D stand in their way!

For my boys,

Thursday, August 2, 2018

Perfect Storm

August 2, 2018

My boys were diagnosed with Type One Diabetes at age 7.  As crappy as this disease is, it's fairly easy to take the reigns and "control" when the child is young.  My goal, as their mother, educator, and substitute pancreas, was to have them fairly self-sufficient by middle school so managing lunch and their school day was predictable and routine.  Mission accomplished.

I'd been warned all along that once a T1D kid reaches his/her teenage years, things can go haywire.  Hormones, attitudes, sleeping in, wanting to eat junk food, peer pressure, wanting to fit in...all are fabulous set-ups for rebellion and wanting the whole thing to go away.  Preparing myself for how to deal with it, I have talked to parents of teen (or former teen) T1D kids and read books.   I braced myself for the teenage years which arrived last October.

First, this is NOT my first rodeo with a teenage child or a teenage boy.  These guys have five siblings who preceded them into their teenage years.  I am prepared to deal with lovely attitude and my newly discovered stupidity and ridiculousness that accompanies all children into their teenage years.

Foolishly, however, I truly felt we'd be well into the teenage years before the Diabetes rebellion began.  Instead, I think Aiden was 13 years and one day old when it started.
Aiden on his 13th birthday

It started with him lying about checking his glucose level.  Even though he was wearing a CGM, he still had to check at least twice per day.  He would say he checked.  He would refuse to write down his numbers on the clipboard (what I use to monitor trends and adjust insulin doses).  One weekend, when he returned from Memaw's house, he literally had not checked his sugar for the entire weekend.  He relied on the CGM, however, the technology is only as good as the information you give it.   He just was really tired of this after almost 6 years, and he, as a typical teenager, had better things to do. 

I fussed.  Nagged.  Griped.  It didn't change unless one of us stood over him and made him do the right thing.  We spent a couple of months just trying to get back the compliance of the sweet little boy we once had. 

Then, a perfect storm of events changed the tides.

First, that weekend sent me over the mental edge, and Aiden and I had a heart-to-heart.  I excused everyone else, and we drove in the car to pick up the older brother.  During that ride, I told Aiden how incredibly disappointed and scared I was as a result of his behavior.  In summary, I said, "I have dedicated my life to learning as much as possible about this disease so that I can teach you.  I volunteer my time and donate money to help those who can change this for you and Asa!   I have lost sleep, lost money, given up promotions, and shed many tears because of Diabetes.  I would do anything in the world to take it from you, but I can't.  It sucks!  I know it sucks!  But, that doesn't give you the right to hurt and endanger MY SON!  If you keep this up, you'll can lose limbs, go blind, have kidney failure and die at a young age, and I DO NOT want to bury ANY of my children!"   This was all through tear soaked blubbering.  I've always protected their emotions, but this time, he needed to hear it to reach him.

Next, apparently, a long time ago, I told the boys if they got their Hgb A1C levels under 7, they could stay home for the rest of the school day.  In January, Asa's A1C was under 7.  I was shocked!  Boy, they QUICKLY held me to my word.  Ok, Asa gets to stay home for the rest of the day.  Well, by proxy, Aiden thought HE should also get to stay home. Even though Aiden's A1C was the best we'd seen in awhile for him, it wasn't under 7.  Well, that wasn't the deal.  He pleaded. Begged.  Argued.  I took a very sulky Aiden back to school while Asa got to come home and play!  Aiden did NOT like that!  He was mad at me the rest of the day. 

Finally, twice per semester, I lecture to UTA's Pediatrics class for undergraduate nursing students.  I speak on the science, the nursing care, but also the parent perspective.  It's a well-received robust lecture.  In February, I had to take the boys with me to conduct that lecture.  They had a morning dental appointment, and we went straight from there to UTA.  They sat in the back of the room and listened to my hour-long lecture.  They knew I lectured, but I don't think they fully grasped what it involved...My knowledge, but also my heart, out in the open for a lecture hall full of students to see.

Aiden commented on our way out about how much he learned listening to me.  Those three things in short succession, something clicked with him.  All of a sudden, he decided to take his Diabetes care much more seriously. 

Aiden cut out junk and seconds.  He's eating more salad, fruits and vegetables.  He's choosing grilled over fried.  He's diligently counting his carbs and limiting carbs.  He'll choose a drink from Sonic over an ice cream.  He keeps his PDM (device to control his insulin pump) and CGM (device that reads his glucose level) close to the hip.  He treats when things start to get high to keep his numbers in range.  He requests his grandparents cook for them instead of taking them out to eat because he knows how restaurant food impacts him; when he does go to a restaurant, he makes wise choices. Asa has always been easier to manage, for multiple reasons, but he, too, jumped on board and followed suit.

In return, Aiden lost about 20 pounds.  I had to regularly decrease his insulin rates to prevent dangerous lows.   Since his diet was healthier and he was exercising more, his body required much less insulin.  Besides normal teenage angst, his attitude improved tremendously (off-kilter sugars impacts mood big time!).  I complimented him immensely and shifted the focus onto how he feels since his sugars are more steady.  He admitted he felt much better.

In May, at a return visit to the Endocrinologist, Aiden had a record low Hgb A1C of 6.8.  He dropped almost a half point.  Asa's, too, was even lower than last time!  If you don't know, an A1C in the 6's is near-normal, near non-diabetic.  And, every reduction in the A1C level is a big reduction in the risk of complications.  He nailed it.  And, he got to have a day off of school!
Boys at doctor's office, hearing word of record low Hgb A1C levels in May

Some kids are harder to reach than others, and it always baffles me what is the final key to get through those thick skulls.  We worried he would revert to being lazy about Diabetes once he got his day off of school, but he has stuck it out all summer.  He is SERIOUS and gets mad at me if I "interfere" with his dosing.  So, I guess, now, I'm just the supervisor.

I'm really proud of these boys, and I hope the remainder of their teen years are spent managing their craptastic disease with such fortitude.  It will help them succeed into the amazing adults they are destined to become!

Help us support JDRF today as they search to find better treatments and a cure for Type One Diabetes!  Maybe one day, they won't have to worry at all!


Sunday, April 29, 2018

Some a Chapter, Some a Page

Some a Chapter, Some a Page
April 27, 2018

On the first day of third grade, Melissa approached me and asked me to play.
My family had moved to a new part of town, new house, new school. Believe it or not, I was a pretty shy kid, but once I knew someone and gained comfort, I would come out of my shell and talk…A LOT (not too different from now).  Initially, very shy.  We played at recess and ate lunch together, and a friendship began.

For the next three years we were practically inseparable.  We rode bikes (without helmets *gasp*) all around our small town. We slept over at each other’s houses. We played with dolls and played outside. We started “clubs” that usually only lasted a day or so.  This was back in the day with only one house phone, no video games.  We had to use our imagination.  We began puberty together (isn’t that a great time in life?!)  We challenged each other, competitively, to exceed in school. Participated in Honors classes together.  Both were offered to skip a grade. Spooked each other playing the Ouija board. Irritated our older siblings with our mere presence.  Had slumber parties.  Figured out how to use a brush and curling iron. She gave me my first Cabbage Patch Doll for Christmas (which was a HUGE deal!).  Our other friends, twins Cassandra and Catrina, were essential parts of our friendship circle, but Melissa and I were truly best friends. 
Couple of really dorky pics of us as kids

At the end of fifth grade, the four of us all went our separate ways due to our family circumstances.  Melissa moved to Arizona to live with her father. The twins moved to Mansfield.  My family and I moved to Crowley.  Bigger house, better schools.  All different directions, all new adventures, but the bonds were formed.

The summer after Melissa moved, at age 12, I flew on an airplane for the first time to visit her in AZ for two weeks.  We paraded all over Tempe as we had done our little township outside of Fort Worth. Over the remaining course of our school years, we’d visit when she came back to TX to see her mother.  We wrote letters, and occasionally, we spoke on the phone.  You see, the efforts to stay in touch were much more difficult as there weren’t cell phones, social media, or email, and calls were long-distance.

During college, we visited at least once, I believe for my first wedding.  We had a great reunion, all four of us, in 2000 shortly after I married Jerry. It never ceases to amaze me how that childhood bond and friendship leads us to always picking right back up where we left off, as if we never missed a beat.   Social media has since helped keep the bond alive and the connection strong.  We can now more easily stay in touch and follow each other’s lives.

So, you had to know I’d throw Bon Jovi in here.  Side note, whenever Bon Jovi announces a tour, of course I plan for all the TX shows, but I also like to pick at least one other city to visit and see the show. This year, Bon Jovi played two shows in North Carolina, where my friend Melissa had recently moved.  It was the perfect storm.  Long story short, I reached out to her, we planned a girls’ weekend to visit and see Bon Jovi. She hasn’t seen a concert since college, and we hadn’t seen each other in a while, so she was very excited about all of it!

I snagged us some fan club presale tickets in row 6, thinking this would be pretty amazing for her.  Since I’m weird and obsessively curious, after I purchased those tickets, I just glanced to see if any better tickets were available.  I thought my vision had failed me when two front row seats for face value popped up.  Needless to say, I whipped those into my cart so fast!  I rolled the dice and bought them!  My only Front Row seat on this tour!  (The other set sold, so I wasn’t out that $).

The minute I secured the best tickets and my flight, Melissa’s super cool husband reserved us a hotel room in Charlotte near the venue so we could spend time together in her home with her family, but we could also spend time alone in Charlotte.

I arrived in NC around lunch on Friday.  Instantly, we reconnected.  It was like we’d just seen each other last week.  We picked right back up where we left off.  SO much to talk about, SO much to share.  Rarely was there a dull or silent moment.  The semi-amazing part is that despite spending so much of our lives in different states, having different life experiences, different parents, different schools, etc., we turned out to be so similar.

We are both nurses with the same graduate degree.  Spelling and grammar Nazis. We talked about husbands, kids, works, parents, siblings, old boyfriends, friends, parenting, life, religion.  You name it, we probably talked about it.  Almost everything was the same and we had the same or similar philosophies.  I guess we were onto something at age 8.

Once we arrived in Charlotte for the concert, we checked into the hotel where we ran into the opening band on the elevator.  (They waved at us from the stage!) We explored the Uptown area a bit before we returned to get ready for the show. I fixed my typical “rock star” hair and put on my new bright sequin shirt. (I got quite a few comments on that shirt!)  Melissa cleaned up like a super model, so beautiful.
She couldn’t believe our seats!  When the lights went down, the excitement soared!  She rocked out and jammed like a real well-trained groupie.  Never having seen Bon Jovi live before, she didn’t know what a treat she was in for!  I think she was dazzled not only by the quality of a Bon Jovi show but also amazed at the front row experience.  It’s something that is hardly matched, and I may have created a monster!  Facial expressions. Eye Contact.  Communication with the artists. Watching the on-stage communication between the musicians and the nuances of each person. The sweat…..those things you cannot see from far away.

Towards the end of the show, JBJ jumped off the stage, during Bad Medicine, and went to his left to shake hands with fans.  This isn’t a typical move from him.  Besides, singing immersed in the crowd to sing two ballads mid-show, he doesn’t often leave the stage, although he will lean to touch hands.  We did not know if he would come our way or not.  When he started walking our way, she had her camera ready.  I had my hands ready to shake his.  Instead, he locked eyes with me, and holding his mic in one hand, leaned in and gave me a hug and KISS!  ( Look at 1:40 on. It really happened!)Afterwards, he continued down the way to shake more hands.  We almost died!  After 30+ years of fandom, a dream come true! 


Afterwards, we visited a local hotel bar just to wind down and recap and we encountered some band members there.  When Keyboardist David Bryan saw me, I said hello, and he commented on my shirt “being awesome” and said he saw it from his side of the stage (Opposite us!).  I think it’s my new lucky shirt.
Me with David Bryan and Phil X in Charlotte, NC

We settled into our room after a long eventful night.  The next day (ok really, it was the same day since we retired in the wee hours of the morning), we explored more of Charlotte on a comedy bus tour, then returned to her home. We spent the remainder of my time in NC enjoying her family.  Her husband is so kind, clever, and funny.  Her adorable boys are smart, charming, and well-behaved.  They were all truly a treasure to be around.  I didn’t want our time to end, but I couldn’t wait to share my adventures with my own husband and sons.  My entire weekend was amazing.
Comedy Bus Tour around Charlotte

I’m writing as I fly home.  I can’t wait to see her again!  North Carolina is beautiful this time of year, and it’s a great place with plenty of things to do within driving distance.  I know that now not only do I have a great girls’ weekend destination, but I have a guaranteed Bon Jovi buddy and tour stop in the future! 

I have now been to over 30 concerts before this trip, and Charlotte is my new Number ONE!  Great seats. Great set list. JBJ sang “Living with the Ghost” (Living With the Ghost). 35 years of friendship and 30 years of fandom collided perfectly. Got the set list, and our photo was on twitter at the end of the show (the girl said she chose us because of my shirt!).  JBJ had great energy.  Experienced it all with my first BFF…and oh yeah, THAT KISS! 

In my life, I’ve always had good luck with “Melissas”  She was the first.  Some people enter your lives and they are there for a page, a chapter, or the whole story.  Missing only the first few chapters, she’s a whole book person.

Once upon a time on the first day in third grade…..   the rest is history!   

Monday, January 29, 2018

Spring Back

January 29, 2018

Another freelance unedited blog here, so forgive any typos. Throwing this one out quickly before I have to head to a Leadership retreat.

Yesterday, I again had the pleasure to volunteer for JDRF to help at the North Texas Type One Nation Summit.  As I'm sure everyone knows, I do what I can to help this organization as they are the primary organization working to make life better for my boys.  If I can't fix it myself, I'm helping those who can.  So, we Walk; I coach other family teams (Family Team Coach and Family Team Chair for two years); I am an Outreach Volunteer (mentor); and, now I serve on the Board of Directors.  And, when I can, I just volunteer to help out.   I'm rambling now.

Anyway, yesterday, I helped out at the Summit at the beautiful Gaylord Texan Hotel Convention Center.  TONS of Pokestops there, by the way, but I digress!  My station was to work the JDRF Events table.  So, basically, in the vendor hall, I helped man (wo-man) the table and talk to anyone interested about upcoming JDRF Events...Gala, Walk, Ride, Kids Walk.

To my point...  A little family came up with a Dad, who did a lot of talking, very passionate, and a beautiful tall thin 13-year-old girl who was newly diagnosed.  I saw a quiet figure, presumably mom, standing next to Dad.  Dad was asking questions and somehow, we branched into a conversation about Continuous Glucose Monitors.  I pulled up my Dexcom Follow to show him how it worked and how you can get real-time information.  Shockingly, I got this reading....
...  Shocker.  I HAD to screen shot it.  But, that's not my point.

As I always do, I try to speak directly to the new T1D kids, too, to help them reduce their fears, answer their questions, talk to them on their level and meet them where they are, because ultimately, it's their disease and they have to learn to live with it.  I talked to Dad.  I talked to this beautiful girl.  I explained how some basic stuff worked, how it could fit into her dancing routine, and I encouraged her to live her life.

All of a sudden, I thought to look up at the quiet mom figure standing next to Dad.  I looked up into a slightly older version of this beautiful girl's face and saw bloodshot and red-rimmed eyes.  I nearly burst into tears myself.  Right there, in that moment, making eye contact with this woman, I was sprung back to 2012.  I recognized immediately in her my 2012 self.  A desperate, scared, mourning Mommy. Makes me tear up just writing it.  I wanted to jump over the table and hug her, which is huge for me because I'm not a big hugger.  Suddenly, what I was talking about with Dad and Daughter didn't matter anymore.  I needed to reach this Mommy.

I asked her if she was ok.  I looked her in the eyes and told her, "It's going to be ok".  Trust me, that's worthwhile to hear but hard to believe when your child is newly diagnosed.  Now, I am never at these events to sell or promote my book, but this time I wish I had one to hand to her.   So, instead, I looked her in the eyes and said, "I know where you are.  This sucks and it's hard.  Let me help you.  There are tons of books that teach you how to take care of Diabetes, but there's not much out there to tell you that what you're feeling right now is normal, and ok. I was where you are in 2012.  It will get better!".  I gave her this blog web address.  I gave her the title of my book to look up on Amazon. Mommy Can't Fix It

I encouraged the family to explore their devices and resources at the vendor tables.  When they walked away, I had to catch my breath.  My heart ached for that Mommy.  In my haste to reach her, I never got their names, and I regret that.

So, my hope is that she will read this blog and maybe reach out to me.  I want to help her; I want the help I didn't have when my boys were diagnosed and all this CRAP was brand new.  I want her to know it's ok to mourn.  I want her to know it's going to be ok, and her daughter can still follow her dreams.  I want to give her a hug.

My sweet T1D fellow Mommy, if you read this, message me.  If not, I hope that I helped her, even in some tiny way.  If I did, my day was a success.

Off to fix my hair before it sticks this way....