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!
www2.jdrf.org/goto/FuseAATeam

Rhonda

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! 
THAT KISS, YO!!!

DID THAT JUST HAPPEN?!!!!


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....

Rhonda

Thursday, November 2, 2017

Newborn Baby

Newborn Baby

June 29.  THAT was my last blog?  Jeez.  Time flies when you're having fun.  I'm going rogue here and blogging free lance, which means, I didn't type-edit-save-edit-type-save-edit-publish first.  We'll see how it goes and how many mistakes you catch.

Last week we had a heck of a week.  I made some changes to their insulin rates and correction factors, so for two nights in a row, we chased lows down all night.  Imagine one of the loudest and most annoying sounds/beeps ever.  That's what we kept hearing all night.

When we silenced the alarm for one boy, the other one would sound.   One night, Jerry was up nursing the boys/Dexcom for about 3-4 hours.  However, he forgot to take his phone with him (which elicits said annoying sound) so it continued to wake me up.  Work doesn't care how Diabetes behaves, so he went to work with bloodshot eyes.
Jerry.  This may or may not be his actual photo that morning.

The next night, I took the hit.  I was up and down all night.  Needless to say, I crawled back into bed as soon as the boys were ready for school.  Fortunately, I had the day off and could sleep a few hours.

The third night, I had taken the boys out to eat, so instead of low, they were high.  I had to get up to correct their high sugars.  Lesson:  If you knew how hard your body worked to process a heavy meal, you'd never do it again.  Well, ok, maybe you would, but you'd think more about it!  What happens is their insulin dosing is fantastic and covers them for 4-6 hours, THEN the fat is processed and the glucose jumps through the roof.  I digress.  The point is, I was up and down trying to get their glucose levels to normal before morning.  I succeeded but I lost another night of sleep in the process.

I figured out the problem and the next few nights were ok.  Fortunately for Jerry as I had to work three nights in a row.  (See eyes above).

Last night, we were both super tired so we went to bed early.  I startled awake at 2 am, after a whopping 5 hours of sleep. I couldn't shut my brain off.  I wondered, "Why haven't I heard the Dexcom alarm?"   Instantly, I think negatively.  OMG, I bet they're not tracing (technology and wi-fi isn't perfect); clearly they're up there low and dying and I'm just laying here.  Wait, listen.  Do you here the devices alarming from the next room?  Nope.  Clearly they failed, too.  Finally, I look at my phone.  Both boys are normal and steady.  Shocker.  

But, then guess what?  It was just enough thought and full bladder to fully wake me up.  I tossed, I turned.  I contemplated the meaning of life.  I counted sheep.  Nothing worked.  I finally got out of bed at 4 am.  Ran an errand.  (Yes, I can do that at 4am since hospitals are open 24/7.  Fortunately my night shift gals were around to visit with).  Then, I headed to work.  A full day with students.  A job that doesn't care how Diabetes behaved or how much sleep I had. Put an extra shot of espresso in my Starbucks, please!   I have to take my bloodshot eyes and physical fatigue, put my best face forward and plow through the day, all the while plotting and planning how I can possibly get into bed by 6:30 pm without feeling like the most awful mother on the planet.

I think I've said it before, but having children with Diabetes is like having a perpetual newborn baby.  So many nights, we are up and down tending to low or high glucose levels. One boy, both boys.  Who knows?  Good food, bad food.  Pump failures. Even when all is well, we wake up to make sure all is well.  There's not a night that one or both of us aren't up at least once to assure the boys are ok.  It's exhausting.  It's like tending to that newborn baby.  Some nights they barely cry, some nights the cry all night, and when they don't cry, you panic and go make sure they're still breathing.  It's exhausting.  

Childhood should be simple, and Diabetes complicates it tremendously.  I work hard to make sure they can be kids and their lives, their childhoods, are as simple as possible.  The price:  Sleep.  The payoff:  Healthy, well-rested children.


In the meantime, life goes on and Diabetes doesn't care.  It won't be forever for me (although I am sure the worry will never cease), but it will be forever for them if we don't find a cure!

Until my next nap,
Rhonda







Thursday, June 29, 2017

Science and Technology

Dexcom

It’s been awhile since I’ve blogged.  That’s not for lack of ideas but rather for lack of spare time.   Working, being a wife, being a mother, being a pancreas…doesn’t allow for much else.

Approximately three years ago, after much research and suggestion from other T1D patients and parents, we decided to get Continuous Glucose Monitors (CGMs) for our boys.  I was reluctant at first because I wasn’t sure it would really save them any finger sticks, and I really didn’t want another adhesive attached to their sensitive skin.  We figured out some hacks to minimize skin irritation, and now, frankly, we’re quite dependent on these little devices.


There are others on the market, but the CGM we chose is made my Dexcom.  If you don’t already know, a little filament (sensor) is inserted under the skin and reads the glucose level in the interstitial fluids. The sensor then sends a reading to the transmitter (attached to the sensor).  That transmitter sends a signal out to the receiver where we get a reading.  It tells us what the approximate current blood glucose is and which way it’s going…steady, up or down.  The receiver alarms for highs and lows based on preset parameters.  It’s science, B!tch#$!  (Sorry, we’ve been re-watching Breaking Bad).

Science and Technology.  Science and Technology that allows for peace of mind, safety and rest.

Before Dexcom, we had to check their sugars at their bedtime, at our bedtime, and anywhere between one and five times per night…each.  That’s a lot of pricks, a lot of expensive strips, a lot of trips up and down stairs, a lot of lost sleep.  It’s no wonder I put on weight because the sheer exhaustion.  That said, a blood test simply tells us what the sugar is in that moment.  It tells us nothing about the trend.  We talked the other day and wondered how many times were one of our sons dangerously low in the night and we never knew.  Now, Dexcom allows us to rest a little easier at night, although there are some nights we really want to toss it out the window.  We can count on it to alarm to wake us up to treat a high or low.  And, if we wake up on our own, we can just check our phones (we have an app that follows the Dexcom readings called Dexcom Follow) and see how the boys are doing.
Days like this are great!  Normal value, steady line.

My boys are now old enough to stay home alone, but with Diabetes in the mix, that’s a much more nerve-wrecking notion.  With Dexcom and Dexcom Follow, I feel more at ease because any moment I can check my phone and see how their glucose levels are running.  That said, I can call and check and guide their decision-making process if needed.  However, I’m blessed with some pretty smart little dudes who 99% of the time have already done what I would’ve done had I been home. 
Low but steady.  


I still have to work night shifts a night or two per week.  When I am home, Jerry and I take turns getting up to handle Dexcom alarms.  It just seems like it wakes one of us while the other is in a different phase of sleep and misses it.  When I am at work, I can still be Jerry’s backup pancreas and alarm.  I feel comforted that I can check them in the middle of the night while I am working.  We have a system.  If something’s amiss, I text him and give him time to message back.  If I don’t receive a message back, I call and wake him up.  More than once, he was in that deep phase of sleep where he did not hear the alarm. We’re a team and we do what has to be done to protect our precious guys.  #Teamwork.

Nights like this stink.  Low and falling....


My girls at work are fabulous.  They’ve become very used to the Dexcom Follow alerts.  Many even know the difference between the high alarm and low alarm.  They are like extra backup wives to Jerry or third, fourth, fifth and sixth pancreases to the boys….    If my phone alarms while I am away from it, they will run it to me and tell me “Diabetes alarm went off.  One of the boys need help!”  They also make sure I follow up with Jerry if treatment is needed.  They’re on it with me.  #Teamwork. 

My initial fear that this wouldn’t save them finger-sticks was unfounded.  With advancing technology and upgrades, they’re really only required to check their sugar and calibrate the device twice per day.  If all is steady and well, they can rely on the reading to dose for meals.  Obviously, if they are high or low, we require they check and treat according to what the blood reading is, but overall, it does save them some pricks….which saves on strips.
This warrants a phone call....


JDRF is one of the primary organizations that has funded research for such technologies like Dexcom.  They work with the FDA for approval of such life-saving devices.  They lobby Congress for Medicare, Medicaid and private insurance coverage of CGMs, knowing such devices foster independence and improve safety of Diabetes patients.  I honestly feel that on more than one occasion, Dexcom has saved my boys’ lives when they’ve gone low unexpectedly or without explanation.  If that annoying alarm hadn’t awakened us, then….  I don’t even want to think about what if.

Word on the street is that Dexcom is teaming up with Omnipod (my boys’ insulin pump company) to have the devices talk to each other and serve as an artificial pancreas. 2018 is the projection!  Can’t wait.  Science and technology.  Research funded by JDRF. 
Picture of an Omnipod and a Dexcom sensor side by side.  You can see what is injected under the skin.


If you’re on the fence about getting Dexcom, I’d highly recommend it.  It takes some practice and finesse, but it’s well worth the time and money spent.  If Diabetes and/or CGMs aren’t on your radar, then you can help by helping us support JDRF and their efforts to make life better for those with T1D, and you can write your Congressperson to encourage their support of the Special Diabetes Program and insurance coverage for Diabetes supplies. #CoverageforControl

You can help today by supporting The AA Team as we help JDRF turn Type One into Type None for Asa and Aiden!  www2.jdrf.org/goto/FuseAATeam.  There's no gift too big or small as every dollar raised is a dollar closer to a cure.




Rhonda


Saturday, November 12, 2016

Living with the Ghost

Livin’ with the Ghost

Any person who’s known me for longer than 10 minutes knows I love Bon Jovi.  The man, the music, the band…I love them all.  Mid-tour during the “What About Now” tour, one of JBJ’s best friends and 30-year bandmates, Richie Sambora, abruptly left the band with little public explanation.  This was the start of a tumultuous three years for JBJ.  His living hell. Richie left, leaving questions unanswered and the public and media speculating about a very private matter.  JBJ tried to fulfill a lifelong dream of owning an NFL team in his quest to buy the Buffalo Bills.  The Buffalo people were CRUEL to say the least, and the bid failed.  Further, he had issues with a record label to whom he had been loyal for 30 years.  Those things paired with more things I am not privy to know, JBJ had a rough time.  Too much!

But out of great pain comes great art. On November 4, Bon Jovi released their latest studio album “This House is Not For Sale” (THINFS).  I like all Bon Jovi albums, obviously, but I do actually like some more than others and some have to grow on me.  THINFS….I liked immediately.  It’s simply fantastic, back to their roots, including recording in their original studio.  It’s dark, it’s light, it rocks.  It’s a reflection of that three years of JBJ’s life.


I was so fortunate to attend a Runaway Tours trip to Toronto, Canada over my birthday.  So, dream come true, I was able to attend a live “Listening Party” on my actual birthday after a fun Q&A session and fan club party the prior night.   I really did like all the songs.  I liked the darkness, the energy, the healing.  I liked hearing Jon’s explanation as to how each song came to life. 

I have mentioned more than once in this blog, in person, to anyone who will hear me that Bon Jovi is my dope.  It’s the drug I need.  Bon Jovi has helped me through some of the darkest points in life and has been responsible for some fantastic life highlights!
JBJ, Tico and me in Toronto, 10/16/16


I instantly liked “Living with the Ghost”, and the more I hear it, the more I like it.  It may be my favorite cut of the album, and since they are all pretty great, that’s saying a lot!  But, here’s why.  That song is me. 

Presumably, the song is about his relationship with Richie.  And, his subsequent healing. Without going into too many impertinent details, I, too, had a friend devastate me in 2010 and had to sever a 16-year relationship.  I think it literally broke my heart and felt very much like a divorce.  Every time I hear “Living with the Ghost”, I’m taken back, therapeutically, to this time in my life. 

Overall, the song speaks to me as I imagine JBJ felt way worse than I did.  His lyrics capture my emotions so well.

Marry me to the blue sky
Bury me in that long last drop of hard rain
Meet me where they stop time
That's you to me on the shovel that's digging this grave
Till I can waltz on a moonbeam
Till I can find a way to return all tears into wine
I'll hitch my ride to a day dream
Can't unkiss the lips that love is leaving behind

I ain't living with the ghost
No future living in the past
I've seen that hate has done to hope
Tomorrow wasn't built to last
I ain't living with the ghost
How can I scream, I'm scared to breathe
I wrote each word, you gave the toast
But we were fire and gasoline
I ain't living with the ghost

I set my sails over wheat fields
Rode waves of amber let a new sun shine on my face
I dropped the sword, put down my shield
I left your scars for the stars guiding my way
I traded hurting for healing
I must admit that I was reeling now I'm feeling just fine
Traded nightmares for dreaming
Go tell your shadows that I got out alive

(Chorus)

Last night I had this dream
I saw a man wash his feet in the church holy water
He worked up to his knees
From his arms to his neck said I'm over in my head
He was crying trying to get some relief
Lord, I'm just trying to get some relief
I had this dream
That man was me

(Chorus)


No matter if I am right or wrong about this song being about Richie, about his healing from his hard times, that’s what it means for me.

I have had some dark times in my life, and the most devastating was when my boys were diagnosed with a lifelong chronic disease.  A disease that can shorten their lives, threaten their lives, and requires constant time, money, energy and diligence to maintain.  Ironically, this devastating diagnosis was the trigger for healing for me regarding that failed relationship.  When I had to focus my energy on the lives of my baby boys, it was time to let go of that hurt and accelerate healing because I certainly did not have enough time and energy for both. 

I was in over my head, crying trying to get some relief.  I couldn’t even scream because I was scared to breathe. Diabetes caused me to Drop my sword, put down my shield and leave my scars for the stars guiding my way.  Having my boys ill meant I traded hurting for healing.  You see, I had to.  

Granted, their T1D diagnosis brought on a new level of pain and required healing, but my focus completely shifted.  T1D framed up my perspective and told me it was time to let go and not only focus on myself but my boys.  I still think about her sometimes, but Diabetes framed it all up and made me care so little about that anymore.  For all the garbage Diabetes dishes out, that was one little gift. 

The message to that former friend.  “I must admit I was reeling, now I’m feeling just fine.  I traded nightmares for dreaming, so go tell your shadows that I got out alive!”

There's no future living in the past. I heard this song, that song was me.  I’m not living with the ghost.


Rhonda

Thursday, October 20, 2016

OOPS!!

Ooopppssss….  Guess I can check this one off the bucket list!

Over the weekend, I went to Toronto to see Bon Jovi (why else?!).  I was meeting other Bon Jovi friends there, including my main Bon Jovi buddy and roomie, Gennie.  They arrived a couple of hours before me because I had to wait to leave until after the JDRF One Walk.  Bags were packed.  I bolted straight from the 5K Walk to the airport and hopped on a plane to Toronto.

It was warm outside in TX but not too bad.  More than anything, the wind was doing quite a number on my hair!  I was sitting in the middle seat of the plane, which I usually dread, because one doesn’t know who will flank them.  I was most scared of Miss Bad Perfume or Mr. Huge Guy (or Mr/Ms Talk Nonstop or Mr/Ms Stinky.  Don’t hate.  We’ve all been there!) because with one I can’t breathe and the other I have to sit with my shoulders scrunched the entire flight, thus I can’t breathe.

Fortunately, neither sat by me.  At some point in the flight I realized I was the one not smelling so hot!!!!  So, I was THAT person!!  I was Mrs Stinky! Granted, I kept my arms down and it wasn’t overwhelming, but I guess I got hotter and sweatier than I thought on that walk.   All I could think about was getting off that plane and getting a shower.  I could NOT meet my friends tattered and smelly!

When I landed in Toronto, long story short, I texted Gennie.  She said they were meeting for dinner after a while, told me our room number (10295), and said the front desk had my name to give me a key.  They had just gotten to dinner when I arrived, so I stopped by the front desk to get a key, drop my stuff off, and God forbid, SHOWER before I went down to meet them!

I hustled my bag and my key up to 10295.  Key didn’t work. Tried three times.  At that point, I bothered to look inside the key envelope and verify the room number.  Oops.  10265.  Hmmph.  Must’ve misremembered Gennie’s text.

I scurried down the hall to 10265 and voila, it opened!  I rushed in the room, plopped my suitcase on the bed, and hurried to shower and join my friends.  Now, follow my thought process.

First thing I see are clothes in the closet.  Those could be Gennie’s.  I don’t memorize her wardrobe. Who cares?  Move on!

I run to charge my phone while I’m showering.  I see her white charger, and think “I’ll use hers”.  Iphone charger?  Since when did Gennie get an Iphone.  I thought she had a Samsung like me?  Oh well, dug my charger out and charged my phone. 

Plugged in my flat iron.  Noticed a small suitcase and some flip flops on the floor.  Those don’t look familiar; maybe someone bought them for her. 

I strip, rocket speed.  Butt naked. Grab out what I plan to wear.  I hustle to the bathroom.  Pads on the counter.  Clinique makeup bag.  Gennie must be on her period.  Wait?!  When did she start using Clinique? 

I grabbed a washrag and the hotel shower gel.  Hurriedly showered.  Jump out.  Put on more deodorant and lotion.  Brush my teeth.  There is NO Mary Kay in there! Where is her Mary Kay? (I have traveled with her enough to know what her toiletry bag looks like!)  

Hung my washrag nicely in the shower and my towel on the back of the door, next to Gennie’s swim top.  They went swimming already?

Got dressed.  Ran a brush through the windblown mess that was my hair.  Quickly ran the flat iron over it.  Kept looking around.  Something isn’t adding up.  At this point, in for a dime, in for a dollar.

I threw my stuff back in my suitcase and set everything nicely off to the side.  I grabbed my phone and plugged in my portable charger to refuel.  I bolted out of the room and took off to meet my friends downstairs.

Now, in the room, stuff wasn’t adding up, but I was too hurried and excited to really stop and think.  As I boarded the elevator and walked to Benihana, I began to ponder.  Surely that was Gennie’s room!  I looked at my texts from her, wondering if perhaps if one of us had gone dyslexic.  Did she type it wrong?  Did I read it wrong?  Verified the text. 10295.  Well, I just showered in 10265.

I arrived to meet my girls.  Squeezed in for dinner.  First thing I asked, “Gennie, you did tell me 10295, right?!  THAT’s our room?”  She confirms.  Our room is 10295.  “Well, guess what?!  I just showered in 10265.  That’s the key they gave me.  I just showered in a stranger’s room!”  Oh my, we laughed so hard, imagining all the possible scenarios!!  Stranger comes in when I am butt naked.  In the shower.  Leaving her room. 

I told them how things weren’t adding up and suddenly I felt the compelling need to go rescue my belongings!  After dinner, we headed straight up and gathered all my belongings out of 10265 and put them in their proper place in 10295.  The only thing I left behind were the dirty towel and washcloth and empty shower gel bottle.  If I had been thinking, I’d have grabbed those, too, but I just grabbed my luggage, carry on, toiletries and charger and ran to 10295!

Obviously, I’m honest, and I didn’t touch or bother any of the stranger’s property.  But I can only imagine what she thought when she came in and saw a dirty washcloth, used towel, and empty shower gel.  It’s like the case of Goldilocks.  I would have paid to be a fly on the wall.  Hilarious to me, probably not so funny to her.

Regardless, desperate times call for desperate measures.  I desperately needed a shower, and clearly I wasn’t above showering, inadvertently, in a stranger’s hotel room.  We spent the rest of the evening having a grand time visiting and getting ready for two nights of Bon Jovi!  It was a very funny start to a great birthday weekend!

Shower in a stranger’s hotel room.  Check that one off the bucket list!


Rhonda