You Know You're a T1D Parent When...

November 29, 2013

Earlier this week, I was awakened in the wee hours of the morning by our power going out.  I chose to just doze back off thinking it would resume soon enough.  I had a warm man next to me; I'd be fine. When I got up around 9am, it still was not back on.  Now, in the past, I would have worried primarily about how I would cook for my kids with no power or I would worry about the meats thawing in the freezer.  And, I did still worry about those things…somewhat.  Since Diabetes has taken up residence in my house, however, my primary concern was…drum roll, please….INSULIN.  It HAS to be refrigerated.  Once at room temperature, it’s only good for 30 days.  If the power did not go on and the insulin thawed, then we would have a lot of wasted insulin.  There’s no way I could have used it all without sending the boys into a coma. As I cuddled with the boys to stay warm, I sent the text message alert to the older boys to NOT open the refrigerator for any reason so that all possible coolness would stay inside.

I called TXU in the morning, and put in our “Out of Service” claim in the morning.  When we returned home from lunch to still no power, I phoned again.  I spoke to someone and told them to prioritize us as I could not lose the insulin.  They were pretty unsympathetic. As the day progressed with still no return of power, I began to come up with alternate plans.  A) Put the insulin in a lunchbox and put it outside since it was only 38-degrees; B) Take the insulin to my parents’ house in their fridge; or, C) Put the insulin in a lunch box and put it in the freezer compartment.  I chose option C.  When the power resumed around 3:30pm (12 hours later), I exhaled and returned the insulin to its safe spot in the refrigerator. All the insulin was saved!

All that back story and rambling leads to this.  I obsessed about the insulin all day.  I knew we could stay warm (get a hotel worst case scenario); I knew I could feed the kids (special restaurant treat for lunch was a hit!); I knew I could easily (albeit very expensively) replace the meat that could’ve been ruined.  But, I was not willing to sacrifice hundreds of dollars worth of insulin.  I was not willing to risk the single medication that sustains my babies’ lives.   Not to mention, to go through the hassle of explaining why so much insulin was wasted and having it refilled would be more than my last nerve could stand.

All that back story and rambling leads to this:  I would have never stressed this much or thought this way if Diabetes wasn’t part of our lives.  And, I don’t think anyone except another D-parent understands my stress in this situation.  My wheels started turning.  Stressing about Insulin is a clear indication that I’m a Diabetes parent.  There are other scenarios, too, that only happen if Diabetes is riding shotgun in your life.  So, with the help of my TOFN friends…Letterman-style but not necessarily in a particular order….

YOU KNOW YOU’RE A T1D PARENT WHEN:

20. You think any beeping sound you hear is an insulin pump failure alarm, and it causes you to cuss (whether out loud or under your breath..depending on the day).

19. You can drop a conversation (important or not) mid-paragraph/sentence/word (either in person or on the phone) to tend to a Diabetes-related issue, and  you will experience zero guilt for your perceived rudeness or abruptness.

18. You carry a D-bag everywhere you go, and the term “D-bag” isn’t the least bit offensive to you.

17. You have turned around or made huge detours, no matter how far from home or close to your destination you are, because you forgot the D-bag.

16. You have to explain to medical professionals (and strangers) the difference between Type One Diabetes and Type Two Diabetes.

15. People think you’re a physician when you discuss Type One Diabetes.

14. You consider “Recognizing a Low Glucose” a developmental milestone.

13. You go to the Pharmacy three times in one day and still do not have everything you need, and you still leave broke.

12. You check for the Carb Counts on the box of Milk Bones, only to realize you’re holding dog treats after you cannot find the Nutrition Facts label.

11. You invite the School Nurse to family functions.

10.  You never sleep all night, and six hours feels like a real treat!

9. You want to sucker punch someone who whines about how tired they are after one night of dealing with a sick kid or partying too much.

8. When your child misbehaves, you ask him/her loudly, in public, “Are you high?”   Using the same loud voice, you threaten to punish him or her if they are NOT high!

7.  People look at you like you’re crazy when you state “He’s been high all day” nonchalantly.

6. Your primary concern in a power outage or pending disaster (ie., fire, flood, storms, apocalypse, etc.) is your insulin stock and/or Diabetes supplies.

5. You make sure your child has candy with him/her at all times.

4. You go to the ER and order people around like your name is on the building (Harper Emergency Pavilion…how can we help you?)

3. You get excited when there is a “sighting in the wild” (randomly meet another T1D family) and you compare doctors, diagnoses, and supplies.

2. You find used test strips in random places…like in your hair after a nap or on your calf while grilling.

And, the Number One Way you know you’re a T1D parent….

1.        Your kid “shoots up” in a restaurant in front of police officers…and you proudly post it on Facebook.

Bright Stars in a Dark Sky

11/24/13

I have mentioned in conversation multiple times, in my book, in blogs, etc. that 2012 was a very dark year for me.  Aiden was diagnosed with Type One Diabetes in February, and before I could pick myself up completely from that, his twin Asa was diagnosed also in August.  I was sucker punched in February, and then kicked in the heart before I was up off my knees.

I am not really a doom and gloom kind of gal, but truthfully, this was easily the darkest and hardest year of my life.  Being betrayed by a friend and going through a divorce doesn't hold a candle to having your babies diagnosed with a difficult chronic incurable disease.

Regardless, after discussing 2012 the other day, I began to rethink 2012.  It sucked, don't get me wrong, but it wasn't ALL bad.  Some really cool stuff happened in 2012.  These events were like bright stars in the dark sky that was 2012.

In April, I hosted my daughter's wedding shower.  I had a lot of fun planning this great party for her, and my "girls" helped me to embarrass her pretty well.  I did not (and still do not) want to let my baby go, but if I had to, I was going to do it with a bang!

Courtney's blanket I had made out of our 5K shirts

 Also in April, I was honored to be asked by one of my closest friends to be her Matron of Honor in her wedding.  I had always been the bride; never the bridesmaid.  I was elated to finally see her genuinely  happy. So, we had a cool Bachelorette party and a beautiful outdoor wedding.

Bachelorette party crew at Gloria's

Melissa and William's wedding with me and Best Man Stuart on April 29, 2012....Jon Bon Jovi's anniversary!

My two out-of-state nephews flew into town for Courtney's wedding. I always LOVE seeing them and spending time with them.  So, a couple of days before the ceremony, we had a family outing to Six Flags.  Diabetes helped make it a cool experience (albeit stressful) as we took advantage of the disability pass.  We had so much fun, and I was tickled to have my "babies" all together. We had even more fun after the wedding going to Rangers games and having XBox wars!

My offspring and me at Six Flags, June 2012

My two nephews and my niece at Six Flags, June 2012.  I SO love these guys!

In June, my daughter was married.  As I have mentioned before, Diabetes interfered with my level of involvement in the planning and paying for the wedding, but she still had a lovely ceremony.  So hard and so sad to let my baby go, but she was beautiful!

Jerry and me with Courtney at her wedding

At very end of September, I hosted a Surprise 40th birthday party for my husband a few days before his actual B-day.  He was in the dark the entire time until he saw his buddy's bucket head through the restaurant window.  We had such a good time celebrating him!  He is "decades" older than me now!

Surprise 4oth Birthday dinner

 Shortly after his birthday party, Jerry and I took our annual anniversary vacation to LA to visit his brother.  We had a great time taking a vacation as adults, away from kids, away from Diabetes.  We visited Universal Studios on one day, and we had a great time returning at night for the Haunted Houses!

Jerry and me with his brother and sister-in-law at Universal Studios, Oct 2012

 While we were on vacation, I willed my friend's twin babies to stay in the uterus so I could participate in her childbirth!  On my birthday, I planned to have lunch with her, take a nap, then have my birthday dinner with my family.  I stopped at the hospital for some task just before leaving for lunch.  Before I even left the hospital, she called me because she was being admitted to deliver her twins at 36 weeks gestation!  I grabbed some scrubs and clocked in to take care of her.  Yep, I had to WORK on my birthday!  But, it was so worth it.  While getting her ready for her C-section, she informed me that she and her husband had decided to give their newborn daughter my name as her middle name.  I teared up.  What an honor! I knew I was hilarious at 3 am, but I didn't know I meant that much to her.

Me holding newborn Duncan Stuart and Eiligh Rhonda after their birth 10/17/2012

Eiligh Rhonda and me on our birthday, 10/2013

There was only ONE thing missing in 2012.  But, truthfully, I spent so much money on hospital bills and medications that I would not have been able to afford my biggest self-indulgnce....so it's just as well. But, I did miss him and could've used his "dope" dose....

 In 2012, I felt Diabetes had stolen my soul.  My heart was refilled by the light of these stars that shone through that dark sky.  Despite the darkness inside of me...Yes, I smiled.  Yes, I had fun.  2012 was not all bad!  Thanks to those who love me most who helped bring me light in my darkest time!  You know who you are, and I hope you know how much I love you, too!

Rhonda

Hidden Diabetes In Pictures

11/23/13

I was browsing through pictures last night, and of course, my mind started reeling.  I began to think about our life before Diabetes invaded.  I remember, but it's almost like another life ago...a movie I once saw...because Diabetes is so consuming.  And, I remember...

Approximately 28 weeks pregnant with the twins

I was so excited to be having twins, yet so very nervous.  I was already on "modified bedrest" by this point, and I did all I could to carry these babies as long as possible. Despite the discomfort, inconvenience and sometimes misery, I knew carrying them as long as possible was critical for their health and development.  I was willing to sacrifice everything for their well-being.

Hospital photo, about to have the twins at almost 36 weeks gestation.  I was elated to be a Mommy again...to two!  I was already in love. My abdomen was the size of a 300-lb man!

Asa in the NICU.  5# 2 oz. I knew he was mine the minute I saw him because he looked like a shrunken Jerry lying in the bed.  Giant eyes, tiny nose, blonde.  I pointed him out before they told me which babies were mine.

Aiden after birth in the NICU.  He was 5-3 and ironically, had to stay longer in the NICU because of unstable blood sugars.  After scaring the life out of Jerry by not breathing right initially, he had lots to say by this point!

Ready to go home at 3 1/2 days old.  Scrawny but scrappy and healthy. How were we to know they were already laced with the genetic predispostion towards an autoimmune response.  They were wired for T1D. 

Age 3 weeks.  Growing with the good booby juice, still bald with giant eyes!

Age 3 months.  Asa in blue.  Not impressed with the photo session.

Age One.  They were so cute, and we had to work so hard to tell them apart even though we were assured they were fraternal.  At this age, we did a genetic test and found they were indeed identical. I thought it would be important for them to know medically, and little did I know how right I was!

18 months old.  There was no shortage of energy or mischief with this cute duo!

I teared up when I saw this picture.  Asa on the left looks JUST like Jerry's kid photos!  He couldn't deny them if he tried.  They were 3, and so full of life and energy.  

Fall, around age 4.  Little did we know Diabetes was lurking in a dark corner of their bodies wearing its Invisibility Cloak.  He was waiting for just the right cue to strike.

Momma's boys, age 5. I never cease to be amazed at how much they look like Jerry, like I had little to no genetic contribution, and how Aiden has such a similar personality as his Daddy.  They may look like Daddy, but Mommy is #1!

Spring of 2012, in First Grade.  Aiden was diagnosed right around this time. How could we have known the genetic Hurricane that was in full swing inside his tiny body.

We hoped Asa would dodge this genetic bullet but feared the inevitable because they are genetically the same.  The weather patterns were about to develop into that same storm.

Aiden, Feb 2012, in the hospital at diagnosis.  I never realized how thin and ill he looked because it happened so gradually.  He still had the energy to smile and all I could do was cry.

Five months later, Asa was in the same boat.  Seeing brother go through this and his trusted teddy bear, Vanilla, helped make the transition smoother

Two handsome boys on their 8th birthday, Oct 2012.  In another day and time, they may not have lived to see this day.

Crashing in the same bed, making night blood sugar checks even more tricky!

Their first Christmas with Diabetes, 2012.  Santa brought them pancreases.  What the real Santa wouldn't do to make that possible!

I cried a lot this day.  Aiden's One-year Diaversary.  One year living with this craptastic disease.  We celebrated his bravery, his strength and resolve with Ice Cream.  In your face, Diabetes!  Around this time, I started my book.  

Growing bigger and stronger by the day.  Summer 2013. Learning more and mastering more by the day, but we still know we are only co-directors of this show.  Diabetes has the top spot. Aiden has gained almost 20 pounds since diagnosis.

Celebrating Asa's One-Year Diaversary!  Ice Cream and a new toy for him, too!

So Happy that I still get to have my baby in my life.  I'll deal with whatever just to keep him. Asa is my silly-heart, and he often reminds me of myself when I was a child.  I love him so much.

Over a year in. And now, we're NINE!  Where has the time gone?

I feel nostalgic every time I see a little blonde-haired girl with pigtails and curls, and I wonder where all the time has gone. I can remember my daughter like that like it was yesterday. 

 I see platinum blonde little boys with blue eyes, and I am reminded how small my Kyle once was. He now is bigger and heavier than me.  

I look back at pictures of Jace, and I remember how elated we were to have our own baby.  Now, at age 10, he's as tall as my shoulder.  I remember when we thought he would be the last one.

And, when I look at my "baby" twins, I remember how I loved watching them grow together.  I love watching their bond.  And, I wish I could more clearly remember the times without Diabetes.  For the first 7 years of their lives, they lived shot-free.  Unless a cure is found, they'll live the majority of their life with this burden.  Humbling.

But, hey!  Weren't they stinkin' cute?

Rhonda

Cry Baby

Cry Baby

11/18/13

As I’ve mentioned before and as any D-parent has felt, today has been one of those emotional cry-baby days.  I’m not exactly sure why.  I cannot explain why sometimes a thought can pass through my head unscathed, and on another day, the same thought brings me to tears.  Fatigue and stress probably play a huge role, but those go hand-in-hand with Diabetes. Today was really no different.

On Mondays, Aiden has Runner’s Club after school.  Every Monday, I go to the school and either run with him or sit on the sidelines and wait for him.  The teacher who runs Runner’s Club has been trained by the school nurse as an Unlicensed Diabetes Care Assistant (or whatever they’re called), but when I met him, he looked like a deer in the headlights and seemed incredibly relieved when I told him I would be there most of the time.  It’s what Aiden wants to do; I want him to be able to do it; and, I want him to be safe and everyone comfortable.  So, on Mondays, we run.  Sideline pancreas, right here.

For whatever reason today, as he was participating in RC, I started thinking of upcoming things in the next couple of weeks.  As soon as Thanksgiving is over, it’s time to go have their A1Cs drawn.  The quarter after that….  That’s what got me.  The quarter after that…..it’s been TWO YEARS since Aiden’s diagnosis.  Two years.  Two. Freakin’. Years.  Two years of shots, insulin, highs, lows, meters, strips, appointments, pumps, A1Cs, glucose…you name it.  Two Years already?  Two Long Years.

Tears just started falling as I relived again how scared and helpless I felt those two years ago.  I watched him running with his peers, and I thought of how he could’ve been taken from me.  I thought of all that Diabetes demands. The sleep deprivation, the stress, the fact that I am the only parent who HAS to be there…because of Diabetes.  Then, I felt a little silly for crying again and tried to dab my eyes on my jacket.

When I got home, a glimpse in the mirror caused more tears.  I’m tired.  My eyes tell on me.  This is so draining for a parent, physically and mentally.  It’s aged me tremendously inside and out.  There is not enough make-up to hide the circles or disguise the fatigue.

Finally, the twins had their Third Grade Program.  They don’t like being in the spotlight, so I was so proud of how they participated whole-heartedly on their program.  Asa kept doing the wrong hand motions, the opposite direction of his classmates, which made Jace and me giggle.  Aiden was trying hard to sing along and not look embarrassed.  They were so danged cute.  And…the tears fell again.  Drip, drip, drip.  Again, so humbled by the thought that I could have lost them both.  Humbled by the thought that any major screw-up on my part could hurt them, and they’re still vulnerable. So proud of how much they have grown and how handsome they are.  Proud of how much they have accomplished despite Diabetes tagging along. Sick to my stomach to think we have dealt with this for almost two years.  I dabbed my tears with my jacket.  Even when they drive me nuts, I cannot imagine my life without any of my children.

When they are grown, perhaps they can know and will understand the emotional toll this disease takes on this Mommy. Right now, I do not think it’s fair to burden them with that.  They have enough to think about.  As we walked out, Aiden said, “Were you crying?  I saw you wipe your eyes on your jacket.”  Great.  I’m busted.  How do I explain?

Before I could respond, wise-guy Asa covered for me and said, “She was probably crying…Boo hoo, those are my babies, boo hoo!”  Yep.  You got it, son!  Close enough.

Now, as I type, the tears are falling again.  Quietly sliding down my face.  I want to talk about it, but it will only make it worse. I don’t want the boys to see me cry; I don’t want to appear weak to my husband or any of them.

Being a parent is challenging.  Managing Diabetes can be an ass-kicker. Put the two together and it’s more than Hercules can bear some days. We are doing well, but it is hard.  And, it makes this Mommy cry.  Still.  And, I think it is normal.  I hope it is okay.

Time to go wash that jacket.

Rhonda

My Book

My Book

Just in time for World Diabetes Day!  11/14/13

I’ve always loved English, and I am a confessed Grammar Snob.  I’m not perfect, but I try.  I tell people all the time that I took AP English in high school and tested out of college English.  Thus, I’ve never taken any English beyond my high school years.  So, it’s not like I have a Master’s in it.  This stuff isn’t hard; it just requires attention to detail.

I’m already rambling.

Anyway, I have always wanted to write a book.  A few years back, I spent a bulk of my spare time trying to draft a fictional novel loosely based on real crazy characters.  I think I wrote 14 chapters or so before I lost steam.  My spare time became less bulky.  Regardless, I still wanted to write a book and say, “I’m a published author”.

As everyone knows, both of my twin sons were diagnosed with the craptastic Type One Diabetes in 2012, five months apart.  To say 2012 sucked (in that regard) is an understatement.  Between that, working overtime, and my baby girl getting married, I was an emotional wreck inside.

Aiden’s 1-year Diabetes Anniversary (Diaversary) was in February.  In January, I really started struggling emotionally all over again.  I was having flashbacks of the pain and anguish I felt on that fateful February day. I was getting angry at the whole situation again.  I really felt myself sinking all over again.

 Around the same time, an old friend of mine contacted me about her son’s symptoms.  He was screaming, “I have Type One Diabetes”.  The same day she messaged me, he was in the hospital with this craptastic diagnosis.  Needless to say, I received a lot of messages from her.  I welcomed them all.  Messages with questions, messages with feelings.  This, too, catapulted me back to that February (and August) day.

I was so happy to help my friend, J.  I was glad I could be there for her for two reasons: 1) She was there for me when I was on bedrest with my twins.  She helped take care of me and my kids, and for that, I’m forever grateful. And 2) I really wished I had had someone to bounce questions and feelings off of when Aiden was first diagnosed.  Besides my husband, I was pretty much alone.  Knowing I couldn't fix it was a tough pill to swallow!

(Later, I was introduced to TOFN, and let me tell you, hearing people speak your language and validate your feelings is very therapeutic.  That group was the lifeline I needed!)

Reliving all those still-raw emotions and helping my friend sparked the idea for my book.  I had the idea that if I could help at least one person not feel crazy or alone, then I had won.  I made an outline of my chapter ideas and things I wanted to include, and I began to write.  It was cathartic and therapeutic.  Frankly, it helped me re-process all of the conflicting, sad, and confusing emotions I had surrounding my boys’ diagnoses and their upcoming Diaversaries.  The book gave me something to focus on, and it really helped in the Acceptance phase of grief.

I showed my work to my equally grammar-snobby friend, Melissa, when it was still pretty raw.  She said, “You’ve got good bones; now you need some meat on those bones.”  I thanked her for the back-handed compliment, and I assured her I did not need to gain any weight.  OOHH, the book.  She was talking about the content.  I see. 

After I put the said meat on the said bones, I had my husband read it.  He’d already read some of the preliminary stuff.  If my husband is anything, he’s honest.  Sometimes brutally so.  He pulled no punches with me.  He told me what needed to be fixed, added to or changed.  I stuck my lower lip out, but I did it, and I think it made the book better. Since this is sort of a horror story, I think he expected it to be very much like Stephen King, but I’m totally less nerdy and creepy than SK is!

After investigating my options, I chose to do self-publishing.  I did not want to have to pitch for an agent, and delay getting the book out any longer than necessary. When I finally finished, I spent a couple of weeks working with Createspace to upload the files and create the book covers.

Melissa helped me again with a great cover idea.  She’s honest, too, but not quite as brutal, and she helped me make it fantastic.  When my step-son helped me shoot the photograph, with no provocation he said, “Wow!  That’s really freakin’ emotional!  WHAT are you doing?”  That was the affirmation I needed that the cover photo elicited the response I was looking for.  After I explained about the book cover, he was so proud to be a part of the process!

Several times, I had to go fix or add “one little thing” then resubmit to Createspace.  Finally, yesterday, the proof was near-perfect.  I think there was a problem with one line space, but I refused to keep splitting hairs.  I submitted it for publishing on Amazon and Kindle.  I’m sure I could still pick it apart today and add more, but I had to put the brakes on somewhere!

A few hours later, I typed my book title in an Amazon search, and voila….there’s my book!  I was tickled!  How cool is that?!  Now, I need to get the word out there.  I want others to read it.  I want the Endocrinologists and CDEs to read and give to newly diagnosed families, because I really could’ve used such help when I walked away from Cook Children’s three days after admission.

I don’t want to be assaulted or coddled, but I do welcome feedback from my D-friends! 

Here’s the link below!  Please share! It’s paperback through Amazon or on Kindle.  It will be more widely available later.  A portion of all proceeds will go to our JDRF Walk to Cure Diabetes Team!

http://www.amazon.com/Mommy-Cant-Fix-It-Diabetes/dp/1493578286/ref=sr_1_1?ie=UTF8&qid=1384437427&sr=8-1&keywords=mommy+can%27t+fix+it

Rhonda

What Would You Do?

What Would You Do?

October 24, 2013

I use social networking for fun, for venting, for voyeurism, and for networking.  I like to see what people are doing, watch their children grow through photographs, and giggle at the silly updates.

I talk a tiny bit about work.  I write a little bit about hanging out with my girlfriends (and getting that much needed estrogen dose!). I gush a lot about Bon Jovi (my eye candy and the dope for my soul).  I brag quite a bit about my kids and my sexy husband (They’re my world).  And, I write, I reach out, I blog, I educate tons about Type One Diabetes.

As the date to the JDRF Walk to Cure Diabetes rapidly approaches, I’m getting more vocal, more frequently, about our need for donations.  Every dollar raised is a dollar closer to a cure for my boys and the 15,000 children diagnosed with this craptastic disease every year.

Once I cleared the depressive fog from my vision after receiving not one, but two, Type One Diabetes diagnoses in 2012, I started acting.  I want to fix everything and move on, but this is one thing I could not fix on my own.  All I can do is teach my boys, lead by example, learn as much as possible, advocate, and help those who can make a difference in finding better treatments and a cure.  It’s a full-time job.

So, today, I started wondering if I annoy people with my frequent posts about Diabetes.  I mean, really, I could go on daily about JBJ, but that doesn’t help my boys or our family Walk to Cure Diabetes team.  That only helps me J  Honestly, I really hope I am not annoying anyone, and I apologize if I am.  But, with that being said, I ask…What Would You Do?

What would you do if someone told you your baby now has a manageable but chronic disease?  I hope you’d do what I’ve done.  You’d put your big girl panties on and deal with it daily, because there are no days off.  You’d learn to stick fingers and give shots, multiple times per day, just to keep your baby alive. You’d learn to weigh and measure foods to get the most accurate carb count.  You’d learn to study the numbers and patterns on a daily and weekly basis to evaluate patterns in your never-ending quest to keep their blood glucose in the elusive “normal” range.  You’d go to every possible medical appointment in different specialties, be at the school regularly, and attend every field trip to make sure your baby is healthy and safe. You’d read anything you could get your hands on to learn more about the disease, more about treatments, more about the current research, more about pending treatments and cures.  You’d learn to function on broken sleep like you did when they were newborns, except this time, they won’t outgrow it.

What would you do if you knew medical research and science have developed some great technologies that can lower the amount of injections and finger sticks your baby has to suffer through?  What would you do if you knew a cure was on the horizon, but more funding is needed to actualize that dream?

I hope you’d do what I’ve done.  My bank account is not big enough to help alone. I can't possibly work enough hours. I’ve never been one to ask for money or chat with strangers, but now, I have to let my guard down and open my mouth.  I have to spread the word, educate, and talk.  I have to think of new and creative ways to raise money for the one organization that is focused on finding a cure for my boys, Juvenile Diabetes Research Foundation.  Fundraisers. Raffles. Direct donations.  Business donations.  Letters. Business cards. Newspaper articles.  Facebook posts.  I have to humble myself and ask for money.  I have to get the word out!

If finding a cure is the outcome, I’ll scream it from the mountaintops.  I’ll humble myself.  I’ll embarrass myself. I’ll annoy people, hoping they’ll take pity on me. I’ll find a way to reach someone, if nothing else but to get a little back from Obama in the form of a tax-deductible donation.

So, again, I apologize if my rants are taxing.  As a Mommy, I’m doing all I can do for the sake of my baby boys.  I’d take this disease from them in a heartbeat and bear the burden myself, but life won’t let me.  

And, again, I ask….What Would You Do?

Please support our team today!  There’s no gift too big or small!

www2.jdrf.org/goto/FuseA2Team

Rhonda

Diabetes in the Back Seat

October 17, 2013

Diabetes in the Back Seat

If you’ve ever read my blog, seen my Facebook posts, or met me in person, then you’ve probably picked up on the fact that I’m a die-hard Bon Jovi fan.  Love, love, love the music!  It’s truly dope for my soul.  And, the fact that Jon is so danged pretty really helps!  I’ve been in love since I was 13.

Fortunately, I’m married to the most awesome, secure, and understanding man.  He lets me jam to the music (he digs it, too!) and he doesn’t care if I fawn over Jon.  He knows it’s all fantasy, I’m just having fun, and I’m coming home to him every night because he’s really the only man for me.  Needless to say, I’ve raised my kids on Bon Jovi.  Since 2011, I’ve been squeezing in a kid to a concert.  Now, first, this is Mommy’s “time out” (and limited funds), so the chances to squeeze them in are limited.  And, with so many kids, I’ve had to work them in over the course of different tours.

I took my daughter and her fiancé to Dallas in 2010.  They truly got to see one of THE BEST shows I’ve ever seen Bon Jovi perform.  Bon Jovi loves Dallas, so it’s always a great show!  Even if you’re not the biggest fan, you really have to appreciate what a great performance it is.  On March 17, 2011, I took Kyle for his 13^th birthday.  He’s my mellow-jello kid.  He didn’t dance and sing, but he liked it. 

This year, I took my “music man” Jace to OKC in honor of his 10^th birthday.  HE loved it!  He danced, he sang, he clapped.  He made every penny worth it!  It’s so fantastic to see pure joy in your child’s eyes and to have something to bond over.  My twins were a little miffed that I was only taking Jace, so I had to explain that I’d get to them in due time.

Frankly, I felt intimidated to take them.  Not because I don’t think they’ll have fun, but I was very worried Diabetes would rear his ugly head and ruin the concert for all of us.  I feel ashamed of myself when I feel compelled to skip something or alter plans because of Diabetes.  But, sometimes He’s really scary.  I feared lows.  I feared crazy adrenaline highs.  I feared a screeching Pod failure. Part of my motto is to still let them be kids and to not deny them any experiences (when possible) because of Diabetes.  I had to put my big girl panties on a deal with it.  When Bon Jovi added Fall dates on this “Because We Can” tour, they added Dallas the night before my birthday (5 nights before their 9^th birthday).  How could I make excuses and say no?  I couldn’t.  It was a perfect gift for two little boys who have been waiting for their turn! Butter Cup sucked it up!

I bought tickets and stowed them away.  They weren’t the primo Fan Club seats I’ve grown accustomed to, but they were nice seats.  I sat in 2^nd row in Dallas in the Spring. I sat in 3^rd row the night before in San Antonio.  I can slum it now and then for the sake of my kids J 

The boys got home from school.  I fed them, they showered, and we took off.  I packed up all Diabetes supplies in a cute discrete bag and loaded up with glucose tabs.  On the way, in between explaining the “concert rules” to the boys and being peppered with at least 5, 432 questions, I bargained with Diabetes.  In my mind, I begged and willed him to stay in the car and not ruin this for us!  There’s plenty of room in my van for him to stretch out and relax.  He can meet back up with us after the show!

We got a snack (pure junk which usually jacks their numbers up, but they thought it was awesome), and we pottied and checked sugars just before the show started.  They were a little high.  I can live with that.

I wish I had a camera to snap a photo of their faces when the lights went down and the concert was starting.  Instead, it’s emblazoned into my memory.  They had a look of sheer and pure excitement on their little faces.  Aiden grabbed his heart and looked at me to let me know it was “beeping” out of his chest!  They were SO excited!  They’re no Jace Bryan, but they clapped and sang, and otherwise, really enjoyed the show.

With Diet Coke and high sugars, Aiden had to potty an hour into the show.  Broke Concert Rule #1 (We potty first and don’t leave during the show).  Since his sugar was a bit high, I took it in stride.  It was Diabetes just reminding me He could wreck this if he wanted to.  I’ll take one potty break over nursing lows in the dark at a concert, which was my biggest fear.

My little rock stars have to get adjusted to the Rock Star schedule.  They were getting pretty tired, so we left before the encore.  Concert Rule #2 broken (We don’t leave until it’s over).  Again, I thought I’d gotten off pretty lucky thus far, so I didn’t want to press the issue with Diabetes.

When they ask questions, it’s like a shotgun blast.  With one shot, you get peppered with thousands of pellets.  They littered my brain with questions on the way home, dozing off just before our exit.  They talked about their favorite songs that were played.  They asked when they could go again.  They want to sit in the Pit.  They made it worth every penny. They made it worth every gray hair that I sprouted worrying about taking Diabetes to a Bon Jovi concert.

I’m sure, Diabetes will get me back somehow as He isn’t usually a cooperative beast.  Actually, I think He and Murphy are in cahoots together, because if you don’t want it to happen, it will…at the most inopportune time.  Chances are, he was picking on someone else, but I don’t know how this escaped his radar.

Regardless, I’ll take it.  Celebrating my birthday with Bon Jovi was great.  Seeing that sheer unadulterated excitement and joy on their faces was priceless.  I think they’ll really remember their 9^th birthday! And, I’d do it all over again!

Rhonda

Far-Reaching Grasp

October 7, 2013

Far-Reaching Grasp

Pretty much since we’ve been married, my husband and I have celebrated our anniversary with an adults-only trip.  Each Spring we pick a location, secure childcare, and look forward to some alone time as husband and wife the rest of the year.  We’re so fortunate to have parents who realize the importance and value of this gift to us and who help us out.

Since Diabetes plopped his fat butt in the middle of our lives 18 months ago, this trip has been needed even more, but yet, at the same time, I have been saddled with a bit more stress to go along with it.  I worry when my boys are with me.  I worry more when they’re away from me.  I worry immensely when I’m more than a short drive away from them.  It’s just one of the struggles that accompanies with this disease.

So, yesterday was our 13^th Anniversary.  Diabetes tries to intrude and take things from people, but I refuse to let it take my boys, my marriage, or my respite. We left for a remote cabin in Oklahoma on Friday.  It was quiet, serene, and lovely.  With grandmothers on duty, we had nobody or nothing to worry about…theoretically. All we had to do was eat, sleep, love, talk, read.  Regardless, my typical worry was compounded by the fact that my phone was on roam since we were so remote.  I could only communicate via text over Wi-fi.  I wouldn’t be able to talk to my boys or hear our mothers’ voices to see if they were stressed over all of this.

The first two nights the boys were with Memaw (Jerry’s mom).  She keeps them overnight a couple of times per month, so she’s used to this routine.  Typically, if anything, their sugars are too high with her because they get to junk-out Grandparent-style.  I don’t really have to worry about them tanking out in the middle of the night.  Needless to say, I succumbed to sheer exhaustion the first two nights.  I slept the better part of 12 hours and 10 hours respectively.  For whatever reasons, good sleep evaded Jerry.

I rested so well, and the amount of time I thought about Diabetes was profoundly reduced from what I do on a normal basis.  It was heavenly.  I’d escaped Diabetes, and He didn’t know where to find me.

On night #3, the boys were back at home with Grandma (My mom).  My mom does great with them, but she doesn’t typically do overnights.  I had emailed her detailed routines and instructions of how we handle evenings and bedtimes, Diabetes-style.  To make the deal even sweeter, Grandma and Papa treated the boys to all-you-can-eat Pizza buffet.  More junk, Grandparent-style. Again, since she doesn’t do the overnights regularly like Memaw, I texted her instructions on how to dose for my nemesis…Pizza.  I felt better after reminding her how to dose for pizza.  I thought I would relax and capture a few more good hours of sleep on my last vacation night.

Jerry was missing his “white noise” fan, so he used a “white noise” app on his phone to help him sleep better.  The noise he picked was TV static.   Apparently, that was the entry Diabetes needed to find me 200 miles away. You can run, but you can't hide!  In Poltergeist fashion, Diabetes slinked through the TV static and plopped his fat butt right back into the forefront of my mind.  He was sure to bring with and employ his favorite torture tactic on me…sleep deprivation.  How dare I think I’m getting away from him!

I started thinking about the damned Pizza.  I know I gave my mother instructions on when to check the boys, when to check again if they were high or low.  But, I started over-thinking it.  I wondered if she knew to check them around the time the extended bolus would hit.  What time is the extended bolus?  What were their sugars at bedtime?  Are they coming down from the standard Memaw’s-house-high?  Does she remember to check them again mid-night if needed?

My thoughts plagued me. I lay for an hour, listening to Poltergeist static, listening to my husband snore.  I tossed.  I turned.  I counted backwards. Finally, I couldn’t stand it any longer.  I knew, in order to get any rest, I’d have to message and ask.  I know I left my boys in capable hands, but my mind will not relax until I ask what I need to ask and say what I need to say. It’s so terribly hard not to worry when they’re holding my heart in their hands.  In their grasp are two of the very reasons I get up in the morning and breathe.  I hoped, beyond all hope, that when I messaged my Mom she did not perceive it as a lack of trust on my part.  I hoped she did not think I was questioning her diligence or integrity. I just needed to know.

She sweetly messaged me back.  Boys were 148 and 180 at bedtime; she planned to recheck 30 minutes after their extended bolus.  Score!  Then, she politely told me she was turning her phone off to charge.  I took that to mean, “Get off the phone, relax, and sleep, Rhonda!  I got this!”

Finally, after another hour or so, with more thoughts plaguing me, I fell asleep.  Yet, it was another non-vacation style typical sleep pattern.  7 hours at best, broken and interrupted.  Diabetes’ grasp is far-reaching and he robbed me of one more night of sleep.

Two nights was good, but three nights would have been wonderful.  I still have bags under my eyes, but truthfully, I don’t think three nights would heal those.  I think I’d have to sleep like Rumplestiltskin.

On our drive back, my husband told me I need to relax a bit more.  So, I pondered that thought.  And, first, I think I have relaxed a lot since the first diagnosis.  As I understand more and can identify pieces of the puzzle, it’s a bit easier to cope.  However, I don’t think I’ll ever completely “relax”. Why?  Because, it’s my job to keep them healthy and safe.  It’s my job to teach them how to think this through and manage it themselves.  And, my heart would break in two, my life collapse, the breath stolen from my lungs… if anything happened to one of these boys because I “relaxed” too much. 

Until a cure is found, Diabetes will have permanent residence in my life, in my mind, in my psyche.  I guess I’ll sleep when I’m dead.

(Mad props and kudos to our moms for taking this all on, with orders for me to relax, with no complaints…so Jerry and I can have some respite and protect our marriage!)

Rhonda

Inspired

Inspired

10/2/2013

I wake up every morning and do the best I can.  Some days are better than others; some days I feel I am barely surviving or holding it together.  With a household to manage, five sons to keep up with, a husband, a job, two adult daughters, two dogs and Diabetes plopped right in the middle of it, some days I feel I’m doing good to just be upright. 

With all those people to manage, one would think the laundry, grocery shopping, and housework alone would be enough to keep me in stellar shape.  Unfortunately, it’s not. So, one thing I do spend energy on is fitness.  It’s important to me in order to be healthy, feel good, work out stress and look good for my husband.   Honestly, since Diabetes climbed aboard, I’ve been struggling somewhat as after some of those long nights managing high or low sugars, all I want to do is climb back in bed.  And, the generalized fatigue makes it hard to motivate myself to go run 2 or 3 miles after working 12 hours.  My bed beckons.

I was at my peak in 2010.  

I pimped my husband out to pay for a trainer; he’s got mad skills.  I focused on my diet. I ate more protein, more grass clippings, less Corona.  I put in the time at the gym as I should.  It was for a selfish reason.  My husband and I were spending our 10^th anniversary on the beach, and I wanted “those” awesome beach bikini pics.  I’d never had them. I got them!  I felt amazing.  My cholesterol was fantastic. (Exercise and seaweed will do that for you!)  Coolness!

I planned to keep it up.  Immediately after the trip, I had a “friend” sucker punch me. That really knocked me to my knees for a bit.  Then, I fell and broke my arm.  Set-backs.  Once the arm healed, I was back on board for a good 8 months or so before Diabetes jumped on board.  That meant my focus became being a pancreas and working like a slave to pay for it all! Being told your baby has a chronic incurable disease could knock the Incredible Hulk down.  Learning to manage it all diverted my attention. Being told both of your babies have an incurable disease is enough to make Hercules’ knees buckle.  Needless to say, something had to give.

 I kept up with my gym routine as best I could, but it wasn’t the same.  It’s really hard to manage it all with THAT beast on your back!  However, now, I’m back on track.  Working hard to make it right again.  I use that bikini pic as my motivation, what I want to achieve again.  Granted, I’m not bad right now, but I’m not that good! I maintain my weight in a 10-lb range, which is just over the weight at which I graduated high school. I make my weekly gym plans, weekly goals, and longer term goals.  Sometimes my goal is a body fat percentage. Sometimes it’s a certain weight or measurement by a certain date. Sometimes my goal is determined by some life event (wedding, Bon Jovi, vacation), and sometimes it’s just “get your fat ass to the gym like you’re supposed to”!  Some weeks I get in there three times and add extra cardio sessions outside of the gym.  Some weeks I only make it twice. Some weeks I miss all together.  Life can get in the way, and being a Mommy and a pancreas comes first, but I try my hardest.

Despite what I think is failure or weakness on my part, I’ve still somehow managed to inspire someone who’s great herself!  Natalie is a high school friend, always a sweet and funny soul.  She lives in LA and is a fitness trainer!  ME?  I inspired a fitness trainer?!  Come ON!  I posted my awesome bikini photos online after that trip, and when Natalie complimented them, my head swelled!  SHE looks fantastic and SHE said I looked like a fitness model.  Really, her comment trumped all others!

I think I have a lot of room for work, but I’ll take the compliment. Frankly, this ego boost came at a great time, and also serves to motivate me to keep on keepin’ on!  Read what she has to say here!  Thanks, Natalie, for your inspiration!

http://fitnessnatalie.tumblr.com/post/62909766075/witness-the-fitness-feature-rhonda-fuselier

I guess in this life, you never know who is watching, who takes notice, or who is inspired because of you!  I hope I can get my already giant head through the door now!

Rhonda

All-Night Diner

Thursday 9/26/13

All-Night Diner

It’s one of those nights.  Good ol’ Diabetes is whipping out his famous torture tactic…sleep deprivation.  In the great words of DH, Sleep Deprivation is Diabetes’ Water-boarding.

I woke up at 0600 on Tuesday morning.  After getting the kids off to school, going to the gym, and running errands, I took about a 2.5 hour nap in preparation for my 12-hour night shift.  With joy, I spent 12 hours caring for other people’s babies.

I arrived back home about 0730 on Wednesday morning.  After tending to the dogs and throwing a roast in the crock pot, I slept about 4 hours.  Ordinarily, I’ll sleep a bit more than that after working, but Wednesday was special.  You see, the schools have these great random days where they release students early.  I call them “Parental Inconvenience Days”; they call them Teacher In-service Days.  Whatever.  I chose to make the best of it.  I took the boys to see Planes, and since Daddy was home, I snuck in a quick pedicure before dinner.  My roast was fabulous by the way, which is precisely why my kids didn’t want to eat it.

My plan was to hit the hay about 10pm after I knew the boys’ blood sugars were ok.  That’s where my thinking became flawed.  Diabetes latched onto my plans and decided to sabotage. We did our typical 7:30 pm check.  Asa was 48, Aiden 133.  I gave Asa 24g of peanut butter crackers.  We rechecked at 8:20, just prior to 8:30 bedtime.  Asa had catapulted up to a whoppin’ 61! 

Typically, the kitchen is closed after dinner, especially after I’ve cleaned.  Not tonight. What would you like from the Diner?  Juice Box for 15g.  Since Daddy was gone taking the big boys to a dumb scary movie, I decided to read.  Asa is my “slow riser” so I planned to check again in an hour or so. 

While reading an interesting book about a killer night shift nurse (oh, the irony), I started feeling pretty sleepy!  I decided to doze for about 30 minutes until the man got home and we could have our nightly “adult time” (Kids in bed, adults can watch TV and converse.  It’s a neat concept).  I guess Diabetes was lurking in the corner, because no sooner than my eyes started to close than Aiden came down stairs at 9:10 pm stating he “felt low”.  He should’ve been asleep 30 minutes ago. Of course, he was 51.  This waitress re-opened the diner and served up 15g of Chocolate Milk.

The man got home about 9:45.  After verbal descriptions and bodily demonstrations of how the movie scared Kyle, I sent him to recheck the boys.  They were low normal.  81 and 100. We decided to go ahead and watch TV for an hour despite my overwhelming fatigue.  Partly, it was because I savor my time with him, and partly, because I know it would do me no good to try to go to sleep with sugars that low.  I’d lay there and think about it instead.  Even when Daddy has it all under control, I have to know and can’t rest.

 

After an hour or so of TV, I crept upstairs with my spelunker lamp on my head.  My knees creaked with each and every step…all 16 of them.  Sugars were at a lovely 48 and 69. Back downstairs.  I thought the kitchen was closed for the night, but I had to open the diner…again…for these special circumstances.  Repeat the same 16 stairs with the same loud knees to deliver 15g of Chocolate Milk each.  Tired. Still tired.  Still have to wait to make sure sugars are good enough to sleep through the night.  Can I please catch a wink…or a breath, Diabetes?  I’ll tell you whatever it is you’re wanting to hear!

We watched one more show.  Recheck at midnight.  102 and 104.  I decided to retire….finally…at that point.  I set the alarm for 2:30 am so I could assure they weren’t tanking just before the “dawn phenomenon”.  Well, 102 and 104 after lows just isn’t quite comfy enough for my good taste.  So, I lie awake.  I think of this blog. Under the covers.  Out of the covers.  Change positions.  Watch the clock.  Finally, I just get up.  May as well since I just can’t sleep, despite overwhelming fatigue.  I can’t sleep unless I know my babies are safe. (The man is sleeping soundly knowing I have this all under control; he has to work in the morning while I have the option of sleeping if need be.  When I work, he has to do this with no backup.  He rocks like that!).

At 0100, I listen to my knees pop and creak up 16 steps again. This time, I sneak a prick on two little toes since they were sticking out; they don’t like it, but they never know unless I tell them.  It gives their over-used fingers one small break. 86 and 107.  One stable, one declining.  Back down to the diner to serve a bit more juice.  Creak, creak, creak, creak….

(Really, I should have fabulous thighs for all of this home Stairmaster exercise I’m getting, but nope.)

Now, I’m wondering what I did to piss Diabetes off.  Did I bad-mouth your mother? Did I flirt with your wife?  Did I not pay enough attention to you?  (I disagree as we had to do two site changes only to have a PDM error 2 hours later which necessitated a call to Omnipod and another site change.  I mean, who cares, insulin is cheap, right?)  I didn’t lose my temper today (despite the PDM error).  I did everything I was supposed to do.  But, Diabetes doesn’t care.  He heard I was tired and needed sleep.  He’s just contrary like that.

So, the house is sound asleep, and I am awake to make sure my baby boys will wake up in the morning.  Worst case scenario, I’m up all night, then I sleep while they’re at school tomorrow.  Then, I hope that tomorrow’s substitute nurse doesn’t need to call me, yet, I hope she does call me if she has any questions about my boys’ care. 

This is a perfect night where a Continuous Glucose Monitor (CGM) would be a great tool so I could rest with the comfort of being alerted for plummeting sugars.  But, I can’t bear the thought of jabbing my sons with any more sharp instruments.  I can’t fathom the idea of them having to wear ANOTHER device on their growing bodies.  And, I don’t think their sensitive skin would tolerate any more adhesive than it already is forced to cope with.

Having to run this all-night diner is a prime example of why I’ve had to give up other things.  Nothing is more important than my kids, so something had to give.  My gym plans fall when sleep takes precedent. My house isn’t as clean as I’d like it because I’m simply worn out some days. My dogs need to go to the groomer. I need a haircut.  I can’t apply for a job that fits my post-graduate education because I have to stay home and be a pancreas, because nobody knows our boys or serves as a pancreas better for our boys than we do.  I’m their Mommy first.  Being a pancreas (and waitress) is exhausting.

It’s 1:30 now.  I’ll listen to 32 more knee creaks as I recheck Mr. 86.  Then, I’ll try to sleep until 0545.  If not, I’m up.  I’m up until because that’s what Mommies and pancreases do.

And think about it.  Really.  Seven broken hours of sleep in the last 48 hours is enough, right?

Rhonda

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