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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Duck, Duck, Goose?

DUCK FIABETES.

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If you would like more information on Big Duck, check out Wikipedia.  If you would like more information on why I went crazy when I pedaled around a bend and saw Big Duck, click HERE.*

*Note: I went to architecture school and Big Duck was in my favorite class, Modern Architectural Design History.  When I say “in my class”, I mean it was a topic covered, not that Big Duck sat next to me and was in my study cram group.  The later would be 1000x better, however this still all seems special to me.

If you would like even more information on Robert Venturi’s use of the term, “Duck” in architecture (hey, learn something new), check This out.

Day total: 66 miles cycled.  Riding across Manhattan at 11pm in stinky bike gear (P.U.) and a “South Hampton” sweatshirt big enough to be a dress or a tent for 3 of me, pretty terrific too.

#DuckFiabetes

 

 

 

Bike Heart

Pinata heart

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

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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.

 

 

 

Nice Stems – Advil On Ice Please

Quick update… One of the Alecia’s Stem Cells JDRF Walk team shirts from many moons ago made reference to “Nice Stems”, as in “nice legs”.  It was cheeky.

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Never in a million years, did I think the switch to cycling would leave my stems looking like this (4 days after my last “accident”):

AW Stems

 

Clipless pedals are awesome, until they are not awesome.  Also why are they not called clip-in pedals?  Or Holy-shirt-I-can’t-get-out-of-these-pedals?  Or I’M TRAPPED pedals?

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Saturday 5/23. First day with clipless pedals. I was killing it, until the very end when I was heading home, and slowing down at a red light. Suddenly found myself on the ground in Manhattan traffic.

My legs hate T1D more than I do.  Really.  I asked them.  65 Miles on Monday.  My bike is fixed (again) and I will be back out training tomorrow.  Hopefully no more hitting the wall (literally and figuratively) or being one with the pavement.

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65 miler on Memorial Day. Highlight was my nephew showing up at the midpoint. Clipped my helmet on for me and then tried to force feed me the clip.

Also this article came out this week.  Excellent and a glamour shot of my dear friend Brian and more information on our Artificial Pancreas trial (definitely one of the better articles out there).

A year ago, I was planning what I was going to wear to a polo match and what snacks I needed to bring tomorrow.  Tonight I will be laying out my cycling gear, grabbing bananas, Gatorade, and pickles on my way home from work.

If you’ve ever felt inclined to support someone doing an endurance sport for the 1st time, please share my link.  If anyone tells you there is no crying in cycling, please tell them that phrase is only good for baseball.  #StayStrong #CryItOut #AdvilAndIcePlease

A Little Heart

This week I’m mildly obsessed with the song “The Heart Wants What It Wants” by Selena Gomez (and don’t even get me started on that “Stars Dance” song.  Oh Selena where have you been all my life?  Oh wait, you weren’t born yet).  To anyone who knows me as a Motley Crue/Cinderella/Arcade Fire/TV on the Radio/Bjork fan, I’m sorry.  Yep, bubble burst.  So speaking of hearts, I LOVE Valentine’s Day.  A holiday created to sell cards?  HELL YES!  I love cards too!  I even love index cards.

Valentine’s Day is a fantastic IMG_0116reason/excuse to pay-it-forward.  There’s still time to Spare a Rose, Save a Child.

I don’t think of Valentine’s Day as a “romance” thing.  It’s about happiness, smiles, being kind (even when you really don’t want to be), doing someone else a favor, surprises, simply saying “I LOVE you”, and grilled cheese.  Why not right?  My only real Valentine’s Day disaster was when I decorated a coworker’s desk with hundreds of heart stickers.  Those stickers weren’t liartumblr_n9q6gjcaoJ1rk250ao1_1280s (so damn STICKY.  Tragic clean-up).  Well you win some, you lose some right?

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And if you need a little inspiration (and who doesn’t love a little magic a la scavenger hunt), please join me in finding some hearts.  Send’em my way (as you can see, February is looking a little skimpy): surfacefine@gmail.com

Do Good, Feel Good.  LOVE.  Oh and get some exercise.  Be good to your heart.

 

Wordless Wednesday – Riders On The Storm

The story to go with this post is just outrageous, bizarre and absurd, but it’s Wordless (and way stressful) Wednesday.

I think maybe the smile is enough to convey my thoughts (and wet hair blown across face /stuck to my cheek apparently).

20 miles.

Adventure.

Check!

Also, Dexcom in shirt.  Can I be like Sponge Bob Square Pants, but instead Square Boob?

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I Love You More

There is so much D stuff going on around here that I crashed yesterday and …

TOOK a NAP (I am NOT a napper).  While my brain tries to process and absorb the past few days, I have some pics I just can’t wait to share.

I (oddly, nervously) HELD the encapsulation project from ViaCyte.

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My friend Cindy took this pic.  She is a lovely and a really funny D-Mom and we tend to make each other cry.  You know what she’s not?  A photographer!  Hello Blurry pic.

Next up: #JDRFOneWalk Conference in Washington, DC was wonderful.  HOPE is so beautifully motivating.  Facial tattoos while on a 20 minute walk by oneself in this nation’s capital, lends to some pretty confusing conversations (I kept forgetting I had it on my face… most of the confusion involved the World Cup).

Mike Tyson without the ear biting.

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My bike riding has taken on a new angle.  Details later, but I’m riding a 3-speed Citibike or a stationary bike at the gym, but more.  My joking is no longer a joke.  I’m training-ish.  I ring the Citibike bell like nobody’s business BUT mostly when no one’s on the path.  Yes, I’m a 10 years old.  Want to join the Manhattan/Brooklyn JDRF One Walk?  That’s the bridge in the background of my bike training pic.  Gorgeous right?

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And finally, I had an incredibly magical moment on Saturday.

Exhausted and pedaling along when I saw a BIG heart!

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Yes, that is a piano that appears to have washed ashore on the tiny bank of the East River.  I hit the breaks and wondered just how tired and dehydrated I could possibly be.

These pics are my proof that I did indeed see a piano in the sand, tagged with A HEART.

Magic, I’m telling you, magic.

More to come. xo

 

 

New Rates And Some Other Stuff

Endo appointment yesterday.  Didn’t have high hopes (high, ha) as I have been running way TOO high lately, especially overnight.  A1c is a higher than it has been in 3 years.  Disappointing but not surprising (up .3 BUT that takes me to the next whole number and that I seriously dislike).  Also gained a chunk of weight.  More than I thought, but not upsetting as I missed having a butt.  Baby Got Back can’t be my favorite song without some junk in the trunk right?

Adjusted some basal rates with my doctor as the last adjustments did zilch.

New basals worked way TOO well overnight. Ooof.  This morning’s headache plus allergies was like being b*tched slapped by my pump and then a bag of freshly cut grass… over and over again.

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Also, I found a whole bunch of hearts this morning. And TONS the last few days.  Timing. Found: hearts . I still have a lot to add.  I find myself walking routes where I know I will see hearts that I’ve already met.  If nothing else, it’s a good breathing exercise.  See a heart, take a HUGE deep breath.

According to FitBit, I’m averaging just shy of 40 miles a week.  How the H-E-double-hockey-sticks is that possible?!?  Amazing.  That’s all walking!  Cray.

There appears to be another shot (shots, ha) at my getting into an artificial pancreas trial.  I don’t want to think too much about it and set myself up for disappointment but the idea of this old body being used for diabetes progress is deliriously exciting.  Stop thinking about it.  Easier to say than do.

My 35th diaversary is approaching next month.  My feelings on this are a tangled web.  I should write about that, as maybe I’m not the only one?  35 years of this fear and giving myself incessant mental pep talks is a really long time.

In other news, my eye is FINALLY healing (and an allergy puff ball).

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This past Saturday, I said goodbye to two of the very biggest Alecia’s Stem Cells supporters.  They were with me from the very beginning of founding ASC.  Saturday would have been their 60th wedding anniversary.  Now they are back together.  Also, being on a moving dock with ashes is a possible recipe for disaster.  Life is short.  Never lose sight of the wonderful experiences you’ve had along the way.  The people who believe in you… hug them, love them, appreciate them.  Sappy-McSappster moment.

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A few other random thoughts and observations:  50 Cent should stick to rap, I need to try pump sites in my lower back, Maya Angelou was one hell of a woman, and I may have seen Apollo Creed at a train station in Jersey on memorial day.

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Be good. ONE Walk

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How did I possibly breathe out of that nose?

 

 

There was a little girl
Who had a little curl
Right in the middle of her forehead.
And when she was good
She was very, very good
But when she was bad
She was horrid!

 

 

Let’s be good.  Let’s feel good.  Let’s do good.

It’s official.  Alecia’s Stem Cells NYC JDRF Walk Team is registered to walk again.

I want you.

I need you.

We need advocacy.

We need to push technology forward.

We need to a CURE.

Come walk with me.

Come support our team.

Spread the word.

Reach out.

What are you doing September 28th?  NYC.  Brooklyn.  A beautiful bridge.  13th Anniversary of the founding Alecia’s Stem Cells.  15th ASC Walk.  25th Anniversary of the JDRF Manhattan Walk.  My 35th year with a busted-up pancreas.  35…. WOW.

Type ONE, until NONE.

ONE WALK.

I need your help.

I.  NEED.  YOU.

For more info, come visit Alecia’s Stem Cells.  xo