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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Blinded Me With Science

 

IMG_9580Thomas Dolby wrote and sang a song called “She Blinded Me With Science” which was released in 1982.  I have always liked the song and am currently waiting at The Joslin Diabetes Center donating all sorts of parts of myself (a lot of blood in the photo above and DNA stuff) and having all sorts of tests for a clinical trial.  I am now waiting for the 2.5 hour eye exam (actually waiting for my eyes to dilate) and the Thomas Dolby’s hit is totally stuck in my head (ear worm) and making me smile like a lunatic banging away on my laptop.

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Little known facts about the song (Thanks Wikipedia):

The song features interjections from the British scientist and TV presenter Magnus Pyke who repeatedly shouts “Science!” (thanks Google).  Thomas Dolby wrote the song because he had an idea for a music video and needed a song to go along with it.  There are a lot of interesting parallels here today.

One of the first lasers to treat diabetic retinopathy

One of the first lasers to treat diabetic retinopathy

The lyrics:

It’s poetry in motion
She turned her tender eyes to me
As deep as any ocean
As sweet as any harmony
Mmm – but she blinded me with science
She blinded me with science
And failed me in biology

When I’m dancing close to her
Blinding me with science – science
I can smell the chemicals
Science
Science

Mmm – but it’s poetry in motion
And when she turned her eyes to me
As deep as any ocean
As sweet as any harmony
Mmm – but she blinded me with science
She blinded me with science
And failed me in geometry

When she’s dancing next to me
Blinding me with science – science
Science
I can hear machinery
‘Blinding me with science – science
Science

It’s poetry in motion
And now she’s making love to me
The spheres are in commotion
The elements in harmony
She blinded me with science
She blinded me with science
And hit me with technology

‘Good heavens Miss Sakamoto – you’re beautiful
I don’t believe it
There she goes again
She’s tidied up and I can’t find anything
All my tubes and wires
And careful notes
And antiquated notions

But – it’s poetry in motion
And when she turned her tender eyes to me
As deep as any ocean
As sweet as any harmony
Mmm – but she blinded me with science
She blinded me with science
And failed me in geometry

She blinded me – with science
She blinded me with

For more information on clinical trials in the US I encourage you to visit www.clincaltrials.gov

Lab Mouse Center

Lab Mouse Center

I’ve Been Here Before, Right? (for the USA)

In the past 2+ years I have had to change health insurance plans (and carriers), 3 times.  The process is simply mind boggling.  New doctors, new procedures, new pharmacies, new bills, moving mountains to make things “work”.  Many people are going through the same thing right now (Health Republic Insurance of New York went out of business recently and although not my insurer, it certainly contributes to the madness with open enrollment ending in 4 days and less options for individual coverage plans in my state).  This process is nothing short of torturous, as trying to find specifics on both On and Off Market plans is a game of “How many questions can you ask and how few answers can you get?”.

My situation is complicated (isn’t everyone’s?) but as I have read through contracts on the coverages (these prescription drug tiers… where are all the other meds?), any decision I make involves risk. The premiums are less ($) than what I was previously paying BUT the coverage is MUCH less (“coinsurance” is not a nice word).  The feelings of “Which decision is the least bad” combined with “OMFG how much is this REALLY going to cost me?” and my new favorite, “What do you mean the insulin I’ve been on for years and have had good results isn’t covered… AT ALL anymore” (<- that’s really happening. Novolog.  See photo).  I will figure it out.  There will be more 4am bolting awake nights (well mornings), and there will be tears but, as I have learned, you just do (and use your brain and maybe kick some shins along the way).

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So, I’m sharing this fiasco (OK, story), because there is a link that is INCREDIBLY valuable and even if you are one happy yellow smiley face sticker with all things health insurance related (oh how I envy you and wonder if you’ll marry me… I have little to offer in return… I seriously can not think of anything except free wifi, a ridiculous amount of gold glitter and I *may* dance and rap in the shower… yikes…?), I hope you will bookmark this link.  It is a post from Christel at The Perfect D (and updated recently).  Need Help With US Diabetes Supplies and Medications? UPDATED! 

Look at ALL that information.  Thanks Christel for allowing me to share this and more importably THANK YOU for doing all this work for all of us!

Information is power.  Go be powerful. xo

 

Stripped?

This morning I went to the gym before work. 40 minute+ workout. Cross training (ish). Weights, planks of torture, rowing, kettle sillies and some dancing around because that’s how I talk while exercising (apparently). Jump around! I stopped at Starbucks as I walked home. My local Starbucks remains under construction. I keep going there, forgetting the closed sign on the door. I started to walk down the steps and OUCH!  It felt like something stabbed me in the butt. Not my butt really, but the part under your butt where your thigh starts.  I took 2 more steps down. OUCH!  Was I being bitten ON the crease of my butt?  What?  Nope.  Kept walking feeling too embarrassed to grab my own butt. At a traffic light I pulled on the fabric of my spandex pant leg and jumped around, smiling, knowing the expression “Ants in Your Pants” was appropriate to my movements.  Somehow that fixed the problem.  Weird. I kept walking.  Took a step off the curb and OUCH.  The biting was back but slightly moved.  I jumped around wanting to stick my hand down the butt of my pants but keenly aware that I would absolutely run into someone I knew.  I kept pulling on my pants and swiped my hand over the spot expecting to feel a straight-pin sticking out.  Nope.  Nothing.  Stabbing feeling stopped.  Weird.

I thought this might have been on my butt since I had 2 of these in my feet a few days earlier. they are called Sandspurs. Logically.

I thought this might have been on my butt since I had 2 of these in my feet a few days earlier. They are called Sandspurs, logically.

As soon as I walked in my front door, I pulled off my pants (careful not to disturb the Dexcom sensor on my thigh and my insulin pump site on my hip).  Looked inside my pants.  Nada.  Looked at the outside of my pants.  Nada.  Looked at the floor.  Nope, nada.  I took a step towards the shower.  OUCH!  I felt my butt.  Look what I found.

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They are everywhere, people.  Everywhere.  I walked around (and worked-out) at least an hour with a BG test strip in the crease of my butt/thigh.  Well played diabetes…better than being in my sock…. again.

Why am I sharing this story?  An opportunity to chat about my butt?  Not really (ish).  I believe sometimes we just have to laugh at the absurd things that happen because of diabetes.  At the end of the day, here are your cards, play the hand you were dealt (I couldn’t come up with anything like that involving butts.  I went down a path of Sir-Mix-A-Lot and then a thing about the Kardashians but that got too strange).  I stripped and found a strip?  Nah.

 

Writing On The Wall?

The timing of this discovery, yet again, magic.

Believe in magic.

A moment where the writing really was on the wall!

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Also if you get down on the ground surrounded by bags of garbage to take a photo, be glad you did not encounter rats.

Stop thinking about it.  No Whammies.  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

 

 

 

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 

 

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!

 

 

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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