Costume Included.

This is the thank you note I sent to the many, many people who generously supported my Amelia Island JDRF Ride.  What a journey.  700 Riders.  154 with T1D. 3 Million dollars raised!  

WE DID IT!  Saturday’s 104 mile JDRF cycling goal is in the books, but there’s a behind-the-scenes story too.  

The weekend’s adventure started on the flight.  I was on a plane with a bunch of fellow JDRF cyclists but was startled to hear someone saying my name and grabbing my arm, only to find one of my teammates and the only other one who’s had T1D as long as I have, with a crashing and dangerously low blood glucose level.  Things got a bit frantic but we pulled together, got him quick carbs and we all worked together.

My fundraising theme this year was Type ONEder Woman and my bike was covered in the names of all my amazing donors, Wonder Woman stickers, glitter and stars.  What you may not have known, was last winter I had the honor to address 700 people on behalf of JDRF in New England.  I shared my experience in clinical trials to improve the treatments of T1D AND I shared my JDRF Ride story (from Burlington to Tucson).  I met so many amazing people that day, but one truly stood out, a little girl named Emma and her Mom.  Emma was decorated with Wonder Woman facepaint (her favorite) and we talked about our mutual Wonder Woman love (who doesn’t love Wonder Woman?).  Her father is even a fellow JDRF cyclist! Throughout the training season, I donned a Wonder Woman sports bra peaking out of my ride jersey.  Slowly a theme evolved, Type ONEder Woman and this little girl and her family, constantly liking my training photos, fundraising pushes and cheering me onward.

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When I arrived at the hotel, I was handed a Wonder Woman gift bag filled with Wonder Woman goodies (the tiara fit perfectly) and the most adorable card, again cheering me on (Thanks Emma’s family). In a matter of hours, I managed to drop a vial of Novolog insulin in our hotel room (sorry Paige, insulin smells disgusting) and then to my complete HORROR, at dinner, my insulin pump DIED (what?!?!?)! I was so fortunate to discover I had a backup pump and supplies in my luggage, but I was reminded of two things: Bad things happen in threes (friend emergency on flight, wasted insulin, pump death) AND the incredible power of teamwork.  In all of these scenarios, my teammates offered to help and share all THEIR own supplies.  And that’s exactly how ride day went.

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Photo credit: Ian Joyce

For the first time in my ride experience, the NYC team stayed together, and we worked as a team.  We rode the same speed to keep ourselves all together.  We laughed at the same ride hilarity.  We helped one another out.  We were truly a team.  Since the route had multiple distance options and looped back to the hotel, we were able to say goodbye to our friends who rode shorter routes and they were able to cheer us on as the last group made the extra 25 miles to get us to the 104 mile mark. Whew!

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At the 76 mile mark, I had shooting pain in my frozen shoulder (they should call it stabbing pain shoulder, not frozen) and my right hand was constantly going numb.  I had the opportunity to call it day.  I looked down at my bike, and the first name I saw was Emma’s, so I hopped back on my bike (I didn’t hop, it was more like a careful climb), stuck with my team and kept pedaling.  From mile 101 to 102, I had a rather cathartic moment, I was looking at Emma’s name and then the names of my nieces and nephews and then my sister Paige, who was right there, pedalling along with me.  I kept thinking about Emma, and what my life was like growing up with T1D. It sounds dramatic (who me?) but it was like watching a montage of my life, like a scene in a movie.  My childhood was directed by the advice given to my parents at my diagnosis, I was a child FIRST and a diabetic second.  I did everything, played every sport, never missed out, but I remember quite vividly when I was the only girl in my class not invited to a birthday party because the birthday girl’s mother told her I was going to die (nope, still standing), or being on a date with a guy who freaked out that I had an insulin pump because I was “sick” and had “fooled him” into thinking I was healthy (ah the old bait and switch of perfection, oy), or the hours I have spent arguing with health insurance companies about the tools I need to take care of myself.  And the rest of that mile I focused on the fact that I was on a historic bike ride for JDRF, my T1D buddies, and myself as this ride raised  an epic 3 million dollars to ensure a better future for everyone with T1D.

At mile 103, we lined up as a team, and waited to cross the finish line ALL TOGETHER.  In that moment of waiting, I saw my friend’s name, the one with the emergency on the plane. He’s got two adorable kids (who were at the ride), a fantastic wife (who rode) and he’s an accomplished cyclist (unlike my scattered cycling skills) and we are in the 37 years with T1D club, together.  As I then told my ride mates, we are so lucky because so many people will never know what it feels like to accomplish a goal in an endurance sport and even luckier, because so many of the people with T1D prior to us, never got to see this point in life.  I am grateful but I’m on a mission to change the future of this disease.

And then I got to do something I have dreamed of for the past 2 years, I crossed the finish line, side-by-side, with my biggest fan, my sister Paige.

 

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Needless to say, no beer has ever tasted as good as the ones waiting for us when got off our bikes!

I thank you with all my heart and busted pancreas for supporting me and inspiring my dream.

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Now, let’s celebrate! xo Alecia (AKA Type ONEder Woman… yes, the tiara has gone to my head)

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The Name Game

This *may* have me giggling like a 5 year old this morning (I also posted it on the NYC JDRF Rider’s Facebook Page and seeing all the bike names has me laughing way harder than anyone my age should be laughing over such silliness).

I’ve decided to stick with “Pinata Bike” for my bike though, since “Colonel Slick Wagon” kinda gives me the creeps.

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My friend, Brian (I have quite a few Brian named friends) wrote this post about his recent first time ride experience in La Crosse.  I like his story for a multitude of reasons and thought you might too:

Brian’s JDRF Ride 

 

Bike Heart

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Last 1.5 miles, Oh my God!  Immediate illegal turn… yet again (rebel) and then full sprint across street in clickety-clack shoes.  Photo.  Stood smiling.  Phone battery almost dead.

A week full of some wacky and wild surprises, THIS was the Sunday evening finale. Cherry on top…..  errrrr, actually heart on top.

Someone I admire so very much immediately messaged me last night when I posted the photo,

“That bike ALWAYS has that much heart on it”.

Yep.  Tears a plenty.

Here’s the next step (well spin): NO QUITTING

 

 

 

 

 

 

 

 

 

 

 

 

 

 

So what happened?

The following is a combination of what I posted on my personal FB page after I returned from the Burlington Ride and also what I sent as an email to the incredible people who’s names are on my bike and donated to the ride.  I’ve also added a few more details.  This isn’t easy, folks.

This past weekend was the BIG day, the culmination of all the months training, advocating, and fundraising.  I was ready, excited and a little scared to ride 100 miles with 238 other cyclists in Burlington, Vermont, all of whom were there to support and further the fight against T1D. 
So what happened?During my training rides, I often had the song “Eye of The Tiger” stuck in my head when things got tough.  Never by choice, it would just pop into my head.  Many people don’t realize though, in the movie Rocky, Rocky Balboa did NOT win in his fight against Apollo.  He lost, but the “win” for him was that he went the distance.  I did NOT finish the distance in Burlington this weekend, at least not in the way I thought I would.  I didn’t even come close to my mental image of victory.  After all the training, it was absolutely crushing to realize I was getting my butt kicked by T1D, AT the actual Ride to CURE T1D.I had the perfect storm of diabetes fails brewing as I got my feet clipped into my pedals Saturday morning.  At the dinner the night before Ride day, my buddy Brian did an fantastic presentation that managed to tie together The Ride program, his childhood with T1D, 19th Century Whaling (yep) and our AP Trial experience.  As he had us all laughing and I finished my well carb counted dinner, I realized I was going low.  WHAT?  I’d been running on the higher side for days.  Nothing had been working and then AFTER I’d finished the meal, that was when I was going low? Are you kidding me?  The details are simply annoying, but I had a very stubborn low.  Like would-not-go-away, lingering jerk low.  Too much food in this belly does not end well.  Needless to say I got up super early Ride morning to try to rehydrate as much as I could.  I didn’t feel great but I would be DAMNED if I wasn’t riding.  I started distance ride routine.  Reduce basal by 50% one hour before I start pedaling, bolus for 50% of breakfast.

Adrenaline kicked in, I was going up and needed to pedal.  When we finally got going, (we started on an uphill) I was ready for my BG to balance out.  The hill would help.  Nope.  I knew I was in trouble before I reached the first rest stop.  I was checking my Dexcom, and not where I wanted to be at all, but was convinced I could fix the situation.  Regrettably, I could not.  I can not put into words how completely and utterly crushing it was to accept I wasn’t going to jump out of the ambulance, hop on my bike, and catch-up to my teammates.

Sounds awful right?  Yet my 3 days in Burlington were absolutely magical.  Mike Clark, the National Ride coach told us the weekend would be life changing.  He was right.  NOTHING went as I’d planned on Ride day, nothing, but my unimaginable day was filled with incredible inspiration and love from my fellow cyclists, the team that runs the JDRF Ride program, the wonderful coaches, the families of the cyclists, people who are not connected to T1D but decided to join Ride (I LOVE those people so damn much), the medical staff who takes care of the riders (they know me VERY well), and the awesomeness known as “the Bike Room”.

Things didn’t get back to normal for me physically for the rest of the day despite everyone’s best efforts (I rode wearing 2 pump sites.  One turned out to be a fail, and I ended up taking shots throughout the day too).  I made enough progress to get the green light to meet my sister a mile from the end of the course, so we could cross the finish line together.  When I finally returned to the hotel, despite keeping my chin up almost the entire day, the enormity of not obtaining my goal hit me like a ton of bricks.  How could I possibly have clocked more miles on my very FIRST training ride in March when I didn’t even know how to switch gears, then I did on the BIG day, 3 months later?

At the banquet Saturday night, I could not have been more shocked as I listened to Mike describe this year’s Spirit Award winner, and although completely confused, I looked at my sister nodding and realized he was talking about me.  I was the girl people had followed through her training highs and lows, I was the girl with a bike decorated with all her donor’s names, I was the girl who kept riding her bike in the bike room, unwilling to leave because I wanted to learn more.  All of the ride coaches unanimously voted me for the award.  What felt like defeat, turned into triumph.  Honored seems like such a small word to describe how I felt then, and feel now.

One of my cycling buddies wrote the following on Facebook after I explained what happened,

“Just to add a bit more perspective for those who weren’t there…it’s not like Alecia just couldn’t finish the 100 because of T1D. She had severe T1D complications that involved getting paramedics called to administer an IV and so on. And, against medical advice, Alecia went on to the break points along the route to cheer on her friends to help us finish the ride. When I saw her at the 70 mile point with a big gauze covered hand I had this image of her yanking the IV out and running back to join us. The Crankees (NY JDRF team) could not be more lucky to have such a teammate. The reason we fight this fight is because T1D can be an extremely serious, life threatening condition and even in the face of just that *on* ride day Alecia fought on and won–the spirit award and the admiration of over 300 people in the room last night.”
There are more rounds for me, and everyone with T1D in this fight, and a century ride to be completed in my NEAR future.  For right now, I am embraced by the incredible love of my family and that includes my JDRF Ride family.

Over $900,000 was raised by JDRF Burlington Riders this weekend to fight T1D.  Thank you for your love and generosity.  On Tuesday I went to my lunch time spin class.  I’m back in the saddle (well spin is actually a lot of out-of-the-saddle).  I think I need a little “me” time this week, but life is to be lived and I remain a fighter.

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The Caboose. 36.

In 36 Days I will be attempting to ride 100 Miles in Burlington, Vermont.

Scratch that.

In 36 Days, I WILL ride 100 Miles on my bike in Burlington, Vermont.

Today is my diaversary.  Diagnosed with T1D 36 years ago today.

I figured out this mathematical magic this morning… 36 more days til Ride and and 36 years of T1D on the same day.  That’s gotta count for something right?

Here’s the newest bit of “flair” in my fundraising plans.

Ok, you knew I was going to figure-out a way to decorate this bike right?  I used to bedazzle Dexcom arm sensors.  All these warnings about creating drag on the bike… I’m already the slowest one folks.  If I’m going to be the caboose, I’ll be a brightly colored, glittered one for sure!

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Here’s my social media fundraising idea (scheme) for today:

YOU are going on The JDRF Ride! Say WHAT?!?! For everyone who has donated to MY riding 100 Miles on 7/25, YOUR name (or message) is going ON the bike! Come with me! This bike is all about inspiration, funding vital research, and a LOT of Alecia flair. Where’s the glitter paint? ‪#‎gettingcrafty‬ #36 ‪#‎diaversarydream‬ 

-> ****MY Dream**** <- (So close to beating the 2001- first year Alecia’s Stem Cells total).

I have had a bit of a heavy heart lately.  When I think about this diaversary stuff, I have uncharacteristically lacked feelings on it.   I haven’t been upset per se, but I have lacked enthusiasm.  My friend posted this photo today.  This certainly turned my mood around.  Note: I definitely do NOT like chocolate mint Cliff bars.

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Also if anyone has a bike helmet covered in LED lights and rhinestones, let’s talk.

 

 

 

Don’t Stop, Won’t Stop (My Dexcom Song)

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A super brief update from the Dexcom/insurance debacle.  I received a bill from the 3rd party (wait 2nd party?  Oo-la-la!  A fiesta!) that supplied my “new” Dexcom G4.  The bill was not for the full bazillion dollars but for the co-pay/prescription plan.  Interesting.  I also received my next 3 month shipment of Dexcom sensors.  Although I do NOT have it in writing (trying), it appears my Medical Denial was indeed overturned and it was NOT because of the 2nd or 3rd party supplier (it’s 2nd right?  Why am I so confused on this?) BUT because I went a little nutso and my doctor had a peer-to-peer review with one of the doctors from the medical insurance company.  Again I do NOT have this in writing (I do have about 10 copies of the denial letter though) but I’m willing to put myself out there and consider this a win.

WHEW!!!!

In other news, I am 61% to my JDRF Ride goal.  In 45 days, (how is this even possible so soon???!? I NEED MORE TIME) I will be riding 100 Miles in Burlington, Vermont.  I still can’t believe I’m doing this (well trying, I haven’t done it yet and my longest ride so far is 65 miles which did NOT go well… but more on that and my NEW game plan, maybe next week).

When I started Alecia’s Stem Cells (JDRF Walk team), in 2001, we collectively raised just over $7000.  Little did I know then how much the team would grow and even go on to walk in other cities.  Switching to the Ride program is like starting all over again.  I am cycling fetus.  Everything is new to me and there is just so much trial and error (and some crashing).  It has been a bit of a relief to not deal with organizing so many people and everyone’s travel plans but on the flip side, the training and time commitment to Ride are significant (read: A LOT).  Want to help me get beyond 61%?  Check out this PAGE… If you could share this link with other, I’d be beyond appreciative!

Cool tan lines courtesy of cycling gear!

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Diabetes Blog Week – Ride On

It is Diabetes Blog Week.  Karen at Bitter Sweet Diabetes wrote (in 2012?), “If you don’t have a blog but have thought about starting one, now is the perfect time”, so I did (which was my first post).  For more information on Diabetes Blog Week please check this out. And thanks Karen for putting this all together.

Here’s today’s topic:

In the UK, there was a diabetes blog theme of “I can…”  that participants found wonderfully empowering.  So lets kick things off this year by looking at the positive side of our lives with diabetes.  What have you or your loved one accomplished, despite having diabetes, that you weren’t sure you could?  Or what have you done that you’ve been particularly proud of?  Or what good thing has diabetes brought into your life?  (Thank you to the anonymous person who submitted this topic suggestion.)

There are a few positive aspects of my life with diabetes… friends I’ve made and the incredible people I’ve met because of T1D would be at the top of the list, but currently, right this very second, I can only answer this by sharing a little more of my on-going JDRF Ride cycling progress.

I can cross “NEVER EVER wearing and entire outfit made of Spandex while walking through, and waiting in Penn Station” off my list of things I would never ever do.  Yep, nailed that one.

I have also learned you need a Bike Permit to take a bike on the Long Island Rail Road (life is full of surprises).  The permit is $5 and doesn’t expire.  It looks like a train ticket.  I’m sure I’ll never lose that one.  Yep.  Lost.

Long Island is shockingly hilly.  An early morning in those hills is far chillier than one would expect.  Getting lost is not the fun adventure you would like to believe it will be.

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Beautiful home, streets lined with potholes, and Oyster Bay way down and in the background.

70% basal rate reduction worked pretty well but I should have started it a bit earlier. I had a GU because the Dexcom arrow was starting to drop, I stayed steady the rest of the ride.  Woot.

A week later, I learned the following: trying to cross the street during the 5 Boro NYC Ride (when you are NOT in the ride but ARE on your bike) is damn near impossible.

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Next, I learned that repeatedly bouncing off the railing of the “OMG-why-the-heck-is-this-SO-narrow” ramp up to the George Washington Bridge is similar to being a ball in a pinball machine.  It is quickly becoming my signature move.  Watch out people.  No really, watch-out.

Are you ready for the big part??… I rode 60 miles in one ride!!  Holy smokes!  The hills were challenging, I went through a LOT of water, and my bgs ran a smidge high until about the 30 mile mark, but I rode 60 MILES.  Nyack, New York is so beautiful.  Just amazing.  If someone told me that someday I would ride a bike from the lower half of Manhattan, up and over the George Washington Bridge, up through New Jersey, back over the New York state line, under the Tapanzee Bridge and up to Nyack, New York, I would have laughed so hard I would have peed my pants.  I might be the slowest and the sweatiest, but I did it.  I still need to improve my pacing (it is currently not so hot) and keep increasing my endurance (also still weak).  And in even stranger news, I happened to have a meeting right over the Tapanzee Bridge 4 days later and pointed out where I had been on my ride.  They asked where I started.  When I answered with, “My apartment”, no one could believe it (I include myself in “no one”).  It was SO far away!!!

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And here’s the deal.  I have thought about doing a JDRF Ride in the past.  After almost 2 years of the back and forth of getting into one of the Artificial Pancreas clinical trials, I publicly stated (at a conference) that I would do the Ride if I got into the trial.  I received the email that I was officially a candidate while still at the conference.  I was/am a chatterbox. I told everyone about being on the candidate list.  There was no way I was getting out of this Ride!

So here I am 2 and a half months from a 100 mile ride in Vermont (OMG x1000).  I think of the many T1D athletes who I admire.  My childhood hero, NHL great Bobby Clarke, Olympic swimmer Gary Hall, Jr, and professional snowboarder Sean Busby.  I admire them in a way I simply couldn’t imagine before now (and believe me, I already admired them tremendously).  I never thought someone with T1D couldn’t do a ridiculous amount of cycling, BUT I certainly didn’t think that I would ever be inspired enough to try (you read the part about all the Spandex right?).  And now, I am inspired… and I continue to try.

Tried to stop Fred Flinstone style but with my elbow instead of feet.

Tried to stop Fred Flinstone style but with my elbow instead of feet.

Cycling Mayhem!

 

Training update:

1st training ride.  Thought it was supposed to be 9 miles.  Ended up being 27.5 MILES.  Rode in snow.  1/2 bolus for breakfast.  Reduced basal rate 30%.  Had lows the entire time.  Ate all my glucose and then some of 2 other riders glucose (oops).  Dexcom and pump were beeping like crazy.  Great lunch at Dinosaur Barbecue.  BGs went back up.  Crashed back down on ride back to Manhattan.  Ugh.  Need to learn.  My normal exercise protocols are different for cycling.

Eating other people's glucose supplies.

Eating other people’s glucose supplies.

2nd major training ride last Saturday.  Left home at 7:45am.  Crossed Manhattan.  Almost collided with a woman carrying about 30 mylar monkey balloons across the street.  Yep.  8am Monkey balloons.  Laughed a lot.  Met ride trainer at Intrepid.  Rode up West Side.  Met 2 other riders near George Washington Bridge.  A few terrifying moments.  Only girl in group.  5 of us total. Slowest rider (again).  Gorgeous day.  River Road was closed.  Rode 9W up Jersey.  Got yelled at A LOT for running red lights.  Was in my own zone…?  Started off with 60% basal rate reduction.  Switched to 70% reduction after about an hour and half. BG remained between 85 and 110 the ENTIRE time.  Thought we were turning around in Alpine NJ.  Saw sign for Alpine.  We kept going.  Stopped at the NJ/NY state border.  Rode back.  Stopped at bike shop/snack stop on Jersey side of GWB.  Had 2 GU Gels by the time of the bike shop break.  Switched to 80% reduction.  Left shop.  Last one out of parking lot.  My front tire clipped back tire of ride trainer.  Ride trainer didn’t even feel it and kept riding.  I dropped like a stone in the street.  A stone wrapped around a bike.  Audience: About 30 people having snacks outside bike shop.  Ugh.  Got home 1:30pm.  One more GU Gel on the way home.  No bolus for GUs. Highest BG? 117.  45 MILES door-to-door!  

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Gravel removed from leg.  FIRST fall is over!  Yay!!!  Still have my teeth!  Woo hoo!

The leg that didn't slide on gravel just banged the bike.  Ouch.

The leg that didn’t slide on gravel just banged the bike. Ouch.

My hand has been swollen since the very first ride.  Got this awesome Xray this week and its just a bad sprain between the thumb and index finger (I struggle with the brakes).  Brace and some physical therapy (you know during my free time while I fight for CGM coverage).  I ADORE this Xray as my Medic Alert is right there.  Safety First!

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7am train tomorrow to Westbury, Long Island.  I need a bike permit for the train.  Who knew?  Amazing.  Heard the route is hilly.  God help me.

Also a HUGE thank you for all the support on this journey.  I am getting closer to my goal to ride.  It’s inspiring to read the messages (cheer goes a LONG way).

Barely slept last night.  Challenging day.  MUST get some shut eye tonight.  Getting late.