JDRF One Conference

JDRF One Conference

                At my primary job, we have been working hard to prep for our new long-awaited hospital tower to open in August. Given that, we have a vacation freeze for the majority of July and August as we will be working feverish overtime to put all the finishing touches on the tower and get everyone trained to the new place. Since “Educator” is one of my roles, I have the large primary responsibility to assure around 70 nurses are trained by Opening Day! So, since there is a freeze and we will be so busy, I planned two short vacation trips in June. Needless to say, the planned busy July and August inadvertently created a full and busy June.

            First, Kyle graduated high school on June 6. Two days later, we jet-setted for California to take the three youngest boys to Disneyland and to visit family in the LA area. Fortunately, Diabetes behaved fairly well, but that’s another blog.  We arrived home late on Sunday night, and I spent the next two days at an annual nursing conference…you know…back to that “Educator” role. I thought I would have a few days home after the conference to work, catch up on groceries & laundry, and refilling the hemorrhaging bank account before we leave again.  (This time, we’re boarding a ship to celebrate with the “big boys” on their planned and promised Graduation cruise)  *gasping for air*

            Plans set.  Busy June in order. Very few breaks. Then, a few weeks ago, I received an invitation from my local JDRF chapter to attend the JDRF One Conference in Washington, D.C. I have always wanted to go to D.C. To sweeten the deal, as part of the conference, we were to each take part in Capitol Hill visits with our Congressional representatives and Senators to lobby for support for the Special Diabetes Program and the Medicare CGM Coverage Act. 

            Anyone who knows me knows I can talk a blue streak about two things….Bon Jovi and Diabetes. So, Game On!  Jerry agreed to hold down the fort, and I took off to D.C. on Wednesday!  I was fortunate enough to fulfill a dream to see some of the historical US Monuments…White House, Washington Monument, WWII Memorial, Vietnam Veterans Memorial, Reflecting Pool, the Lincoln Memorial.  I was sweaty with that D.C. summer heat and humidity, but I was beyond excited to be there. I made it back in time to the hotel to clean up for meetings and dinners. Great research updates about the Artificial Pancreas, Smart Insulin, Prevention, Complications and Beta Cell Encapsulation. 

            On Thursday, we all loaded into taxis and rode to Capitol Hill. Representatives for JDRF, many like me who are volunteers, stormed the Hill to lobby for support for Diabetes funding. For my State and area, we visited the offices of John Cornyn, Kay Granger, Roger Williams, and Ted Cruz. At each Senator and Representative’s office, we spoke to their legal health aides, and let me assure you, I have never felt so OLD as we spoke to these bright and receptive aides who looked younger than my oldest child!

Meeting with Congressman Roger Williams

Ready to Storm Capitol Hill 

            Thursday afternoon, Thursday evening, and Friday were spent in more educational sessions and networking with other JDRF staff and volunteers for my state and other states. Since I had a couple more hours to kill, I turned the opposite direction from the hotel and explored a bit more of our Nation’s Capital. Lo and behold, I found the front of the White House!  I thought I was in the front on Wednesday, but I stand corrected.  It was surreal to stand in front of such a historical place that is recognizable around the entire world.

In FRONT of the White House

            Besides education, which I am all about, I think my favorite part of it all was meeting others like me who are passionate about their organization. We all have our own impactful stories…tear-jerkers…and I love to hear each one. I feel less alone when I hear others; I feel liberated when I am able to share our story.

            Also, I never dreamed in a million years I would lobby Congress for anything, so it was an exciting opportunity to go, learn the process, and speak up for my boys, my father-in-law, all other T1D patients, and represent myself, my family, Texas and JDRF.  Being a volunteer for JDRF has truly been the Band-Aid for my broken heart after my boys were diagnosed. Helping those who can help find better treatments and a cure for T1D because this Mommy can’t fix it alone.

            Volunteering for JDRF gives me meaning. Hosting our JDRF One Walk Team has been therapeutic as my boys can feel and SEE the camaraderie for them and all of those afflicted with T1D.  I will Captain the team, until the boys are ready to take over, so that we can raise vital $ to fund education and research, especially for my favorite project, Beta Cell Encapsulation.

ViaCyte Beta Cell Encapsulation device

I serve as a JDRF Mentor, helping new families to not feel so broken and alone upon diagnosis and steer them to resources and involvement that helped me feel hopeful and empowered when I was new to this battle.  Last year, I served as a Family Team Coach to help new and sophomore One Walk families become more successful and engaged.  I knew nothing year one and had to figure so much out; this type of help is vital to teams’ success.  Now, this year, I am Family Team Chair.  For some odd reason, my chapter thinks I am qualified to lead all the other Family Team Coaches as we all aid new and sophomore families through the One Walk process.  And, as I mentioned, now I have had the chance to volunteer to be an advocate on Capitol Hill and attend this conference!

            It is truly an honor to me, and I feel humbled and privileged to be asked to represent for my boys, all T1D patients, my local JDRF chapter, my state.  I guess all I can say is that this organization is the primary source of hope I have that one day my boys will be cured and/or they will have a fantastic treatment that minimizes the burden of their disease and reduces or eliminates all potential T1D-related complications.  Alone, all I can do is to be the Mommy Pancreas and make sure Diabetes doesn’t beat my Asa and Aiden.  Together, we can beat Diabetes!

            I do it all for them!

            Support us today as we help JDRF turn Type One into Type None.

            www2.jdrf.org/goto/FuseAATeam

Rhonda

Groundhog Day

Groundhog Day

“Caught in a blizzard I didn’t predict, trapped in a time warp.  Doomed to relive the same day over and over again until I get it right…”… or until there is a cure.

It’s 3 am.  I awake for the third time since 10 pm to an alarm.  One boy is 259, one is 59.  One gets carbs, one gets insulin.  Don’t mix them up.  Hair disheveled, face wrangled, I fumble up then back down the stairs.  Fall back into bed where sleep quickly retakes hold.

3:30 am.  Eyes pop open to glance at the monitor.  Need to assure the low sugar is rising.

4 am. Wake up to assure the low sugar is normal and steady and the high sugar is reducing. Attempting to think logically through the veil of chronic fatigue and the fog of waking up again.  All appears well.

5:45 am. Wake up for the day.  I have to shake off the cobwebs and pull myself together for the long day ahead before I wake up anyone else. Make sure sugars are acceptable for the next half an hour while I selfishly do something for me….you know, like take a shower and comb my hair.

6:10 am. Wake the twins up for school.  Check alcohol swabs, glucose tabs, strips and lancets in school kit.

6:30 am. Guinea pigs are fed. Teeth are brushed, hair combed, faces washed…maybe. They are 11 and find such hygiene optional at times. The noise factory arrives downstairs to check sugars, plan breakfast, dose insulin for breakfast, eat breakfast. “Don’t forget to update the Dexcom and write it down!”…lest your OCD mother has a fit because she MUST analyze the numbers regularly.

7:00 am. Bus arrives.  “Kits and Dexcoms!”  Assured they have them; most days they do.  Oh wait!  Forgot their water bottle. Run back for the water and an extra hug and kiss while the bus waits because you know, it’s imperative, and everyone else can wait.

7:00 am – 3 pm.  Plan dinner. Run errands. Work with burning bloodshot eyes. Frankly, I guess the red makes the green of my eyes “pop”.  Arrive home within minutes of the boys.

3:30 pm.  “Kits and Dexcoms”  The boys drop their school kits and Dexcoms on the kitchen counter. Mommy obsessively writes down sugars from the school day.  Scroll through Dexcom to see how they looked over the course of the school day.  What are their current sugars?  Intervene if necessary. Check alcohol swabs, strips, lancets in home Diabetes kits.  Move PDM to home kit and set school kit aside for the next day.  Homework, chores, piggy time.  Recreation….well, at least for them.  Me?....

4:00 pm. Brief gym session; cook; clean; bills; mail; dogs

5:00 pm. Call the boys for dinner.  “WASH your HANDS!”  Two purposes:  a)  Wash your hands before dinner, and b) Clean hands for a sugar check.  Check sugar.  Update Dexcoms.  Count dinner carbs and dose insulin.  Let’s eat!

5:10 pm.  Wait!  Seconds already?  I haven’t even finished making my own plate!  Of course.  Have more. Count carbs.  Dose insulin.

5:30 pm.  Clean kitchen.  “Can we take a walk?!”  Sure.  Bag packed with water and juice boxes, because we can’t just “take a walk” anymore.  Nothing is simple, not even a walk.  “Kits and Dexcoms, please!”  Ear falls off from all the chatter and incessant questions.  Stop at duck pond and drink a juice, hoping it will keep the sugars up.

Halfway home, juice wasn’t enough.  Sit on the sidewalk, looking half-crazy, eat candy and wait for the glucose level to rise to a safe level to continue our trek home.  Boy is feeling better.  Walk 20 feet before the next one says, “Wait, I’m low, too!” as Dexcom shows low with arrows dropping.  Same treatment, sit in front of a different stranger’s house.

6:15 pm.  Home. Showers.  Sugars stable. Soap is optional, they think.  Finish cleaning.  Prepare for tomorrow. Put on PJs while they shower.  Dexcoms still show stable sugars.  Finally I can relax, so I pour a big glass of water and hit the chair.

BBBEEEEEEEPPPPPPPPPPPP…..  The Pod shriek of death.  Fantastic.  Get back up.  Change insulin pump. No rest for the weary.

8:00 pm. Adult time for the man and me; reading time for the boys.

9:00 pm. Bed time.  Check sugars.  126, great!  82, great L.  That won’t last.  Give a couple of ounces of chocolate milk, hope that holds him for the night.  Brush teeth.  Kisses and hugs good night.

9:20 pm. Boards creek.  Someone is tip-toeing downstairs. “I feel low”.  Not the one who was 82. It’s Mr. 126.  Now he’s 92 and dropping.  Chocolate milk for him, too.   Try again to hang with the man and watch some TV.

10:20 pm. Dexcom sugars look good.  Going to bed.  Long day. More work tomorrow.

11:30 pm.  First alarm.  82 and chocolate milk didn’t hold.  Now 62. Yoo-hoo box it is.

12:00 am.  Midnight.  Glance at monitor.  One going up, the other steady. Back to sleep.

12:30 am.  Eyes pop open.  Still steady.  Doze back off.

It’s 3 am.  I awake for the third time since 10 pm to an alarm….

Groundhog Day.

Although activities may vary on a daily basis, this is pretty much how it goes.  Some days are better than others.  Mind you, I didn’t mention much about the hubby, the dogs, the other kids, all of whom demand and deserve their own level of time and attention.  This is just a glimpse of the demands of Diabetes.  I feel like I have three Full-time jobs at least. 

Don’t get me wrong.  I’m not feeling sorry for myself.  It is what it is because I have kids with Type One Diabetes.  Despite it all, I love my life and I am living a different version of “the dream”.  Rather, I feel sorry for my kids, and those like them, who have to live with and deal with this disease every day of their lives.  Unfortunately, not much will change for any of us until there is a cure. 

Support us today!
www2.jdrf.org/goto/FuseAATeam

Rhonda 

Four Years

Four-Year Diaversary

What a difference four years makes!

Aiden, age 7, upon admission to the hospital on Feb 20, 2012

Getting his special Build-A-Bear in the hospital

Four years stronger!  Age 11

I have had some bad days in my life, but I truthfully must say, Feb 20, 2012 was easily the worst day of my life. My suspicions were confirmed, and my baby's life and childhood were forever altered.  This stupid craptastic disease devastated his body, and we had to put the pieces back together. It was one thing that I couldn't fix.

Although a lot has changed in four years, nothing has.  We are all stronger, and we are all used to dealing with Diabetes.  However, there are still moments when I get choked up, times when I get mad, and days when I cry. No two days are the same, and just when you think the beast is tamed, he rears his head in another form, with another trick.

I sometimes feel like I'm living in a parallel universe.  There are times I don't remember a time without Diabetes; we just go with the very busy, very tedious flow.  Other times, I remember the innocence and care-free spirit like it was yesterday, and I weep.  Within and after a rough year, we took the bull by the horns.  We have learned as much as possible, and we continue to learn.  I wrote my book about our experience to share with other newly diagnosed families.  We participate with and volunteer for JDRF in multiple ways in order to support those who are working towards a cure. And, we live!  We make sure our boys have a good childhood, despite the presence of Diabetes, and we enjoy our time with them!

With all that being said, today we celebrate Aiden!  A cute stuffed puppy, a sappy card from Mommy, and a big fat cupcake to shove in Diabetes' face!  We celebrate the medical advances that have allowed us to keep our spunky, smart, silly baby with us.  We celebrate his fortitude in dealing with a very crappy disease that requires him to think like an adult WAY too often for his young 11 years.  We celebrate his strength in all he does.  We applaud how much he has learned in four years , and how well he understands and tries to manage his disease. He is an inspiration to many!

We love you, Aiden!

Rhonda

Survey Says

Survey Says

I don’t always get into “Repost this if you love your children”, “Like if you want a cure for Cancer” (or other attention-seeking posts) or surveys on Facebook, but I thought this one was kind of cute.  Granted, my “babies” are 11; I realize the answers would have been much funnier if they were 4, but I’m working with what I have.

I posed these questions to the twins.  Here are their answers:

Without ANY prompting ask your kids these questions. It's a great way to see what they think. Copy and repost

Asa & Aiden, Age 11.

1.      What is something I always say to you? 
I love you

(I really thought they would say “Check your blood sugar” or “Brush your teeth”.  Glad they hear “I love you” more than my nagging!)

2. What makes me happy? 
When we’re quiet.

(So much makes me happy, like good sugars, brushed teeth, good grades in school, decent behavior.  Quiet helps, too!)

3. What makes me sad?
Nothing makes you sad.

(I guess they don’t see me cry much really.  I try to keep too many negative emotions off their childhood plates.  Diabetes makes me sad…A LOT!)

4. How do I make you laugh? 
Asa says, by telling my awesome jokes!

(Admittedly, he’s a very funny kid, and he does make me laugh a lot!)

5. What was I like as a child? 

*I don’t remember how they answered this one* 

6. How old am I? 
41

(Can’t fool them anymore.  For the longest time, I had them convinced I was 29, which is odd since I was 30 when they were born.  Now, their math skills are too strong to blow that one by them!)

7. How tall am I? 
5’5”. 

(Yep, that’s it.  No secret)

8. What is my favorite thing to do?
Sleeping, and spending time with us

(Since I work so hard and Diabetes takes so much….yes, yes I like to sleep.  Spending fun times with them is great, too, because one day my nest will be empty)

9. What do I do when you're not around? 
Sleep

(See #8)

10. What am I really good at? 
Cooking

(Seeing how they reject a more-than-fair percentage of the meals I cook, I was a bit surprised by this response)

11. What am I not very good at? 
You’re good at everything.

(I beg to differ.  I can think of a good list of things I suck at)

12. What do I do for a job? 
Nurse

13. What is my favorite food?
Mexican food

(And one of the many reasons I am carrying too much weight right now!)

14. What do you enjoy doing with me?
Taking Walks and cuddling

(True story!).

So, have a little fun and ask your kid, too!

Rhonda

Detox

Detox

January 15, 2016

I was in the best physical shape of my life the two years before Diabetes struck our family!  Over the past couple of years, I have slowly put on 15 or so pounds. Diabetes, stress, fatigue, age…it all added up.  This doesn’t make me feel good, so I decided to take charge! Last fall, I decided to step up my fitness game (since I really had a pretty pathetic one) and started with a new local gym.  I did a “Challenge” over my busiest time of year.  Despite a vacation in Mexico, birthdays, lots of work, etc…I still lost 5 pounds.  It was just a little dent into the 20 pounds I wanted to lose, but it was a start.

After October, I continued 1-2 times per week doing weights and cardio at my regular gym, then I added twice-weekly fitness regime with the new gym.  Maintained during the holidays, so I consider that a win!  At the first of the year, my new gym, let me call it CoolGym, decided to host a “Detox”.  I needed another booster to jump start with weight loss, so I joined the 21-day challenge. 

Complete with signing up for the Detox, CoolGym provided access to a book written by a couple (I'll call them the Yuletides) who really believe what they’re selling. Of note, the Yuletides are “Health Promotion” experts, not physicians or nurses.  I'm not discounting their knowledge of their trade or nutrition, just stating a fact.   Frankly, I’m not much of a tree-hugger, but the underlying principle of what they had to say in their booklet IS valuable.  Basically, whole unprocessed foods.  Cut out the fats, trans fats, processed foods, caffeine, dairy, sugar, and much to my chagrin, alcohol.  Wine and cheese hiatus ensues.  The meat and bones of it is lean meats, loads of fresh veggies, tons of water. 

They make a lot of claims that by following this detox, one will have less constipation, bloating, fatigue, cravings, inflammation, stress, etc.  It’s all pretty true.  On my sixth day in, I have lost 3 pounds and my stomach went from looking like 7 months pregnant to 5 months. (I’m aiming for the non-pregnant look).  They go into a lot of detail about macros, pesticides, heavy metals (not the Metallica version), toxins, blah blah blah.  I really think some is very good and valuable information; some is a bit of a tree-hugging stretch; and some is downright hooey (I just really don't think the aluminum in my deodorant is going to give me Alzheimer's)!

It’s all good though.  As I’m reading this, I have an open mind, keeping my eye on the end goal.  Feeling better, losing weight.  I want to read and understand it all thoroughly, even though it really isn't rocket science to me. I dismiss the hooey, stick with the solid principles that I know to be true.  But then…then it happened. 

Exhale.  Shake my head.  Want to fire an email but realize you can’t fix dumb.  Brew about it. 

Under the heading AutoImmune Disorders, the Yuletide's write:

“Autoimmune diseases affect 24 million people and include but are not limited to:…Type One Diabetes. They are caused by the immune system losing its ability to differentiate between proteins belonging to our own bodies with proteins belonging to a foreign invader (bacteria, viruses, or parasites). Symptoms start to present when damage occurs to cells, tissues and/or organs in the body, this happens because our own immune system is attacking those cells. Each autoimmune disorder is determined by which proteins/cells are being attacked.”

(So far, so good, right).  Then they continue, “…Bottom line is that the root cause for all of the diseases listed above are the same. One can have a genetic predisposition to autoimmunity but 75% of your risk comes from environmental factors that include: diet, lifestyle, infections (prior and ongoing), exposure to toxins, hormones, weight, etc”   THIS is where they lost me.  Now, I rant!

75%?!  75%!   Guess what?  THIS is where I call BS!  The mere IMPLICATION that genetics only contributed 25% risk to this disease and the rest was CAUSED...caused by diet, lifestyle, etc!  GROWL! Tell the mother of the 8-month-old who had virtually nothing besides breast milk up until diagnosis that her baby’s diet and environment precipitated the onset of Diabetes. What about all the children whose parents let them be sedentary and feed them garbage?  They don’t get Type ONE because of it (Type 2 is a different story).

 I had two healthy seven-year-olds.  We limited processed foods or fast food.  They have a fruit and a veggie every meal.  They were active and of normal size.  Matter of fact, at dinner yesterday, they asked me for more KALE!  Since we were out, Aiden sauted up more himself!  KALE!  Unfortunately, they had a genetic predisposition to develop this craptastic disease, and even if I fed them completely organic, never vaccinated, or made them do hot yoga…it was going to happen.

I will concede the point that ABSOLUTELY diet is a huge contributing factor in the maintenance and control of many autoimmune disorders, but diet didn't cause them.  Diet, weight, and lifestyle are HUGE pieces of Type TWO Diabetes (which is NOT auto-immune).  As a matter of fact, in many cases, it can be halted by changing those things. A poor diet can precipitate exacerbations of certain diseases. A healthy diet with lean meats, veggies, fruits, no processed food, etc. is good for EVERYONE!  A healthy diet helps my boys maintain a steady glucose and lessens the amount of insulin they need.  However, diet alone will NEVER free them of the need for extrinsic insulin.  Only a cure will. 

I’m not sure how many people signed up for this Detox, or how many have done this before.  Regardless, let’s say easily hundreds of people read this information, thus “up to 75%” of them do not understand auto-immune diseases or Type One Diabetes.  Thus, that many people are fed incorrect information from non-medical professionals.  Which leads to an entire cascade of problems and misperceptions and dumb remarks.  Ask any T1D parent…we’ve heard them all!

 

So, for anyone out there who reads this, my chidren’s diagnosis was not caused by toxins, lifestyle, weight, hormones, or their diet.  It was caused by an auto-immune disease to which they were genetically predisposed.  (Same set of genes has yielded them gorgeous giant blue eyes, wicked above-average intelligence, and wit and charm!)   I DID NOTHING wrong to precipitate the disease.  Like most T1D kids, THEY are innocent children who did nothing wrong either.  It is what it is.

Through healthy diet (which I would promote regardless of T1D), exercise, AND the mandatory use of insulin, they will grow to be happy and healthy adults…adults with Type One Diabetes. 

Rant over.  Moving on.

 

Rhonda

It Could Be Worse

It Could Be Worse.


"It could be worse; it could be cancer!"  So many times, especially right after diagnosis, well-intentioned folks said such things.  It could be worse. Worse than Type One Diabetes.  Logically, I know this, but to have your situation, your mourning, your struggles downgraded is a bit demeaning. My boys' lives were forever changed in 2012, and that's nothing to downplay.


Fast forward almost four years.  1000s of shots.  1000s of finger sticks.  100s of doctor visits.  Way too many venipunctures.  Millions of carbs counted.  Countless sleepless, sleep-interrupted or sleep-deprived nights.  That's a small part of what Type One Diabetes entails.  Otherwise, I have happy, healthy, and thriving kids.  As long as I do everything right, as long as I teach them right, as long as Diabetes cooperates, it should stay that way.  Diligence and Perseverance.  I'll sleep when I'm dead.


I took my otherwise very healthy non-T1D son to the Ophthalmologist yesterday to follow up on an eye condition he's had since birth and follow up on his recent surgery.  Every time I am here....EVERY. TIME....  I see little preemies following up on possible or diagnosed retinopathy of prematurity.  There's no telling what other complications or struggles they're dealing with. It makes me so grateful my twins were born near-term at almost 36 weeks, healthy, never on oxygen.  The rest of my children were born healthy and term.


I see other kids with varying forms of cerebral palsy, and I am grateful all of mine were born healthy. I see little angels with different obvious syndromes, and I am grateful that the only negative genetic card we were dealt was the propensity to develop an autoimmune disease....because although it sucks, we can manage that!


Despite and with T1D, they are healthy and happy.  They are smart and caring.  They play.  They read.  They fight. They learn and excel in school.  Diabetes is a nuisance, scary, an every-day chore, but one day, my boys will be independent. One day they will go to college.  They will move out.  They will get married and have a family.


Sadly, way too many of the innocent children I see in that office will never have all that my boys have.  I am not saying their parents' struggles are worse than mine.  They may pity me for all I know.  Rather, we have a different kind of complicated to contend with...they have a kind of complicated I'm not sure I am equipped to handle. 


So, at times like this, I am reminded...there are worse things than Diabetes.


Rhonda

Thank You Sponsors!

The AA Team would like to thank their business team sponsors! 

Thank you to Chile Red Company  (The great printer of our shirts!)

Dr. Duran MD (Women's Healthcare)  - A fabulous women's physician with whom I work.  Go see her today!

Crowley Road Animal Clinic - A great, reasonable, honest and fair veterinarian whom I (and my parents) use for our furry babies!

Woods Financial Group  (My generous neighbor's business)

MIK Ortho  (The great Orthodontist who is personable, honest, and will be responsible, when it's all over, for fixing 4 of my 5 sons' teeth!)

Fort Worth Pediatric Dentistry  (The pediatric dentist we've used for all SEVEN kids, and who have known me since before the twins were even conceived!)

 and Texas Health Huguley  (Myawesome primary workplace who find little ways to make a big difference!)

Your support helps raise awareness and gets us closer to a cure!