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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Monkeys at the Beach

“You cannot get through a single day without having an impact on the world around you. What you do makes a difference, and you have to decide what kind of difference you want to make.”

—Jane Goodall (born 1934)
Primatologist, Ethologist, Anthropologist, Un Messenger Of Peace

bike nake

I’m riding a bike again (striped down… the bike, not me…yet), raising funds and building diabetes awareness as are a WHOLE team of other wonderful, amazing and inspiring people… and we’ll be riding at Amelia Island, Florida! 100 Miles.  Woot.

http://www2.jdrf.org/goto/alecia

Again and Again (really)?

The great health insurance debacle continues.

I received a letter 2 days ago dated 12/16 (last day of open enrollment for coverage starting 1/1), that my health insurance application was rejected due to the form being “old”.  Yep.  I had questioned the insurance broker in reference to the date on the application and if there was a newer one (there was a discrepancy in one of the plan codes although not mine).  It’s a long story involving many emails and phone calls but I was assured by the broker that the MY plan name and number were the same so the application would still be processed.  Nope.  After cry-panicking, sending an angry email on Saturday night, followed by more crying, I had to pull myself together for a FaceTime call with one of my nephews.

My nephew started by asking me, “What’s happening?” so I scaled it back but explained that I was in a bit of a mess with health insurance and how crazy things were.  He repeated back to me “crazy”.  Indeed, crazy. I spoke of how the options I had were not even close to what I wanted and all were worse than my current coverage but now another wrench was thrown into the mix.  He said something I didn’t quite understand, mentioned Lightning McQueen and talked about things that are “great”.  I told him the situation is tricky and he kept saying “tricky” back to me.  He then said my name, followed by “Rocky run”, put his hands above his head and started running in circles.  Next he dropped to the floor and did his version of Rocky Balboa push-ups (looked more like an impression of a seal).  Did I mention my nephew is 2 years old?  And it made me laugh and then think.  I have the privilege from time to time to speak to people about the evolution of T1D care and technologies, about progress and research, and the most important part… advocacy, I have spoken about the JDRF Ride program and why it is so very dear to me. I get to talk and talk and even tie things into some of my own personal philosophies and parallels with Rocky Balboa.  Eye of the Tiger, baby.

Freedom Fog

Freedom fog all around

My nephew’s advice was solid.  This insurance mess is a mess for sure, but I need to keep fighting.  This was another round, not the full fight.  It’s like athletic training.  You keep going and when you hit obstacles, you use your mind and experience to figure out multiple solutions.

I moved on to Plan B yesterday when I’d exhausted everything I could do in this debacle (it was Sunday), I took advantage of this Miami-esque weather we’re having in the North East, put air in the Pinata bike tires, dressed in a costume of Spandex and started pedaling.  I worked on Plan E (I already had a rough outline of C and D before I reached the West Side.  There were so many tourists near the WTC memorial and most walking in the bike lane.  “ON YOUR RIGHT,” was unsuccessful with most people who were not speaking English and I may have sounded like the teacher from Peanuts, “Wha-waaa-whhhha-WAAAAHH” so I decided to take side streets back across the city.  What a gift.  I saw beautiful graffiti from some of my favorite street artists, cleared my head a bit, smiled.

Wonder woman

Pinata Bike on a mission

Mr Robot Pinata

Hello Mr Robot

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LOVE

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Wheatpaste girl

This morning I started my follow-up calls to my health insurance broker after a night of emails and networking my D plan.  My “kill them with kindness rule” had to be shelved for a bit.  Emails unanswered, voicemail messages unreturned, cell phone calls and texts done (repeatedly).  Couldn’t get my hands on a carrier pigeon (damn those birds are fast). I called the broker company’s main number and then kept dialing extensions of everyone else in that department.  Oops.  I’m sorry I dialed the wrong extension, I haven’t been able to get through, can you transfer me, I don’t mind waiting, thanks so much for your help.  I finished signing all the appropriate forms a few minutes later.  Will this situation resolve itself in enough time?  I don’t know.  Plan C is so close now I could lick it.

Patient advocacy starts with us.  Always.  Now stick your hands in the air and Rocky Run.

xo

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

 

 

 

Worth.

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Sunday.  Back on Piñata Bike.  Across Manhattan. up the West Side, Over the George Washington Bridge to 9W.  Just me, Piñata and a ride coach.  For months, I have wanted to take photos on the George Washington Bridge while I pedal along.  Finally did it.  Don’t worry, I was wearing a parachute.

Silly Rabbits, there are no parachutes, one adventure at a time kiddos.

The phrase on this photo bugs me because of the grammar.  Ending a sentence with a preposition?  What the what?!?!  But, the saying is true to me, and applies to so many things.  Endless.

I didn’t have a great ride on Sunday.  I rode slower than I envisioned.  I struggled on a route I sort of already know.  It was a gorgeous early morning, and I wasn’t riding strong.  There was so much road kill on 9W.  A lot.  I kept running over very flattened, furry things.  Oh man.  Sometimes I tried to imagine I just ran over a very dirty Barbie fur coat.  I wasn’t feeling great.  Blood glucose ran pretty well and I was drinking my electrolytes.  As I lagged behind the coach, I looked up a hill and was stunned.  There was a deer.  A fawn.  In the shoulder of the road, right in the path.  I yelped to the coach (yelping is a sort of description of a really weird non yell noise that I made).  Cars sped by.  The fawn jumped into the brush and there were two baby deer.  The ride coach passed the deer.  I sped up, a little scared the deer would jump into the road and tackle me (another bizarre bike adventure? Please don’t tackle me deer).  As I got closer, all 3 just stared at me.  The fawn had large scars on her back.  She clearly didn’t have it easy.  For some reason I said in a low voice, “You guys need to move over.  Go.”  And I waved my arm.  They stayed put in the brush.  Apparently even deer don’t listen to me.  Oh, dear (errrr deer).

I didn’t ride as far as planned.  I was the reason we turned around early (I hate that).  I had a MUCH better ride back (wind on my back helped) and I got the coach to talk to me (I actually said “tell me a story”.  When I’m not feeling 100%, I find chatter an awesome distraction).  I ended up riding 46.5 miles.  Not great (for me) but acceptable.

Obstacle are placed in our way to see if WHAT we want, is worth fighting for.

I want to help cure diabetes.  I want to push new technologies forward.  I want to use my voice, my time, my life, my experience to make a difference in this diabetes game.  I’m gearing up with a new plan.  My goal didn’t end in Burlington.  Here’s where to help: RIGHT HERE , or you can physically push me along (I’m really not kidding)… I’ll let you know the route!

 

 

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

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.