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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Last Call KISS

2f66677eb0cf8d07c91dbe56cd32015cIn a matter of hours, our T-shirt sale/fundraising extravaganza will come to an end (and the shirts will GO TO PRINT).  The ONE to NONE shirt sale ends TONIGHT at midnight CST.  I had hoped we’d sell 40 shirts (needed to sell 24 to go to print) and Pres-To-The-Effing-O (PRESTO) I just heard we are up to 46.  Wow!  Not bad!

Proceeds go to JDRF, rocking graphic T goes to YOU (or you could give it as a gift, right?  Or buy a whole bunch, and give as LOTS of gifts).

I’m too tired right now to end this post in a witty, or snarky or even sassy way (although I’d like to, so I’m open to suggestions), however earlier today I explained the rationale behind a KISS work/design project (Keep It Simple, Stupid).  I then used a photo from over the weekend when I happened to meet Paul Stanley in a restaurant (he of KISS fame) to drive my point home.  I laughed myself silly and even cheered for myself which is just full-on weird.  My wit is now long gone for the day (possibly week), so if you would like a T-shirt, just get on it, because you are running out of time (mere hours).

Rock and Roll all night?  Yep, tired.

http://inktothepeople.com/marketplace/ink-detail/38593

 

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

 

 

Wimpiss Breath?

Tonight is the official kick-off for the NYC (Manhattan’s) ONE Walk which is the roll out of a whole new platform for JDRF’s Walk (the evening is called Progress to Type None).  The purpose of the event is to discuss research developments over the past year (artificial pancreas, complications, encapsulation, smart insulin, restoration, and prevention), upcoming Team Walk plans, and the new website for the walk this year (thank God)… AND guess who the opening speaker is… ME.  Guess who I get to introduce? Jeffrey Brewer (I just found this out 15 minutes ago… yikes).

Today seems like a GREAT day to shake-off all this fear stuff that has really been nagging me since my 35th diaversary last week (check out the comments section of that post… yay DOC).  Let’s face it though… I’m not going to simply shake it off (although I really LOVED Scott’s comment “Yes, thirty five years is a long time – but it’s just a series of individual days, and so far you’ve survived every single one of them. There will be many more, and I’m sure you’ll survive those too.”)  So awesome. 

So, what’s my plan, you say?

Redirecting scared energy.  Granted this is an experiment… but, I think this could work (read: OMG this better work).  I have a lot more to read at this event than I thought and I haven’t actually seen the powerpoint that I will speaking along to (terrible sentence structure by the way… ending with a preposition.  “Along to”… cringe worthy).

But here’s the really great part… I get to speak a tiny bit about Alecia’s Stem Cells and with that, I will absolutely talk about the goals of this team.  That puts me in fighter mode.  That takes me out of worry mode.  I really need to get back to outlining that part though (geez where is this day going?).

Also on a slightly humorous side note: in my introduction tonight I am supposed to state that I am our Walk’s Corporate Team CHAMPION.  When I was a kid, my brothers and I would wrestle (although this story applies to most games we played).  When someone won, they SANG (often while flexing their muscles), “I am the CHAMPION, YOU ARE THE WIMPISS BREATH”, over and over (there was a tune involved, I promise).  I still don’t even know that wimpiss breath means but it had something to do with being a wimp and it sort of sounded bad.  It is damn near impossible to think of saying that line tonight, CHAMPION,  and not flexing like a professional wrestler from the 80s and then raising my arms up and hopping up and down like Rocky (I may just do the flexing anyway).

Tonight I get to embrace my fear of public speaking yet again.

I WILL redirect my fear.

I am forced to be brave.

When you’re SCARED but you still do it anyway, that’s BRAVE. -Neil Gaimon

 

Australia?

ASC 2013

Alecia’s Stem Cells- JDRF- 2013

 

WE’RE GOING TO AUSTRALIA!

 

Well actually the Alecia’s Stem Cells 2013 Shirt graphic is. Remember our award winning ASC 2013 JDRF NYC Shirts?

“New Technologies, New Treatments, New York”… ?

 

ASC JAJ

JDRF Australia contacted me for their New York, New York themed Gala (well, Galas!). They LOVED our shirts (hey we loved our shirts too), so presto, I sent over the graphics.  They have a printer who printed the shirts for free (yay) and I just got word they have printed shirts for all their volunteers to wear at the Australian Galas… So in a way, ASC will be at 4 Galas this May…Melbourne, Sydney, Perth & Brisbane.  Amazing!

This perfectly ties in with my last 2 Volunteering themed posts too!  More amazing!

Do good, feel good.

Me and my parents

Me and my parents

JDRF 2013 Walk

Weekend Update – Cloning Plans

Friday.

No time for blogging this week.  Not enough sleep… ever.  Must. NOT. GET. RUN. Down.

1.  JDRF NYC WALK- Still trying to get ready (there’s really no such thing as ready right?) and delivering as many shirts to people as possible the past few days (riding Citi Bikes like the Wicked Witch of the West also refering to myself as Mr. McFeely and making “speedy deliveries”).  I have no idea how I am going to get so much stuff (props, shirts, all my normal D stuff, baton, pom-pons) to the Walk site.  Must do laundry in next 48 hours.  Also must try cloning myself between loads of laundry.  Looking to make multiple clones.  Will definitely kill one clone for new pancreas.  If my current pancreas worked for 6 years-ish, I am excited for my new, cloned, works-for-6-years, pancreas.  Going to send other clones off to do projects.  I will definitely have my real self go to the Walk,  and will leave the clones at home to walk the dog and clean.  I hope they clean better than I do.  Hey future clones, the bar is NOT high at ALL (the home is a mess though).

IMG_42742. Due to demand (I know, that truly sounds ludicrous), we are offering a SECOND printing of our JDRF WALK Team shirts.  Lots of styles:  men’s, women’s, kiddie-poos.  I LOVE these shirts but, I am biased.  Proceeds go to JDRF.  Cool shirt goes to YOU!  <- Click there.  Get a shirt!

Our shirt sale ENDS Tuesday 10/1 (I can’t believe it’s almost October).

 

3.  A friend is making me a Dexcom case.  Yes, he has a rapid prototyping machine.  He is most likely going to kill me for posting this pic (but maybe he’ll be fooled by a clone and the one he kills can be the one I get the pancreas from?).  Hopefully he won’t see this before the Walk Sunday.  He was on my very first Walk Team in 2001.  As for the case, he has been prototyping samples with dimensions he found online (not using my actual Dexcom receiver).  Yes, this is kind of totally awesome.

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What I love about this photo… we are in a restaurant.  My friend has my Dexcom in a case that doesn’t quite fit.  There are calipers on the table.  We appear to be doing important stuff.  He is holding a glass of wine.  This is what we call a very productive design meeting.

4.  If you live on the East Coast and don’t already know this, WaWa makes the best coffee.  Also my favorite, and best tasting milk.  WaWa supports JDRF.  WaWa’s coffee just got THAT much better.  I wasn’t always a New Yorker people.  Support businesses that support JDRF.

Special thanks to my baby bro for taking the time to get me these pics.  Let's go Eagles.

Special thanks to my baby bro for taking the time to get me these pics. Let’s go Eagles.

5.  I hope this laundry/cloning thing works out.  I change what I said before.  I would bring 2 clones to The Walk but dye their hair so everyone wouldn’t be confused.  I really need them to help me get all this stuff to Foley Square and pay for the cab.  One clone could carry my silver backpack (how else will people see the back of my shirt?) and the other one could help lug stuff around all day and get me a snack and maybe some coffee.  I’d put a clone in charge of our Walk Team table.  I’d go chat with the Animas rep about the VIBE.  I’d go visit my buddies over at Team Hoffmanderson and also a new friend at Team Pigs Are Precious. I’d put that clone to work (I “may” be taking this too far.  Lack ‘O Sleep).

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Lucky 12

LUCKY 12I pass by this patch of sidewalk almost everyday.  I noticed it again as I rushed home from the gym this morning.

12

12 is my favorite number.  12 is my “lucky” number.  Alecia’s Stem Cells was founded 12 years ago.  2012 wasn’t quite what I thought it would be.  There’s gotta a be a BIGGER 12 out there.  Please, please let there be a bigger 12 out there.

I received some horrible news from a friend over the weekend.  My Dad hugged me and I just started sobbing.  I believe that is very much a Dad/daughter thing.  Hug from Dad = tears from me.  Life has thrown me a slew of challenges, all in a row lately.  My Dad kept whispering in my ear, “It doesn’t make sense right now, but there is a plan for you.  Just remember, there is a plan for you.  It’s just a different path.”  There was some God stuff thrown in there too but that’s between me and Dad and well, God.

I was with the friend with the horrible news last evening (that is a terrible description by the way).  There were some tears.  We discussed many things.  She’s always supported my diabetes and JDRF projects.  I told her about the JDRF Walk Kick-Off/ Research Update I’d attended on Wednesday night.  I told her about JDRF’s encapsulation program (or at least what I understood of it) and all the things I learned last week.  I told her about how I felt inspired, a renewed sense of hope, again.  I told her about my friend who’s part of JDRF’s Voices Council and how she recently shared with me that she too felt inspired.  At the end of our meal, I think I’d not only given her a pep talk, but I’d also given myself one.  She kept telling me how much I inspire her.  Talking with her really helped inspire me too.  Sometimes, I think the energy you give off, really does come back to you.  I got the most positive e-mail from her first thing this morning.  It felt like a hug.

12

LUCKY 12.

I’ve gotta a lot of work to do.

Join me.  Join our team.  Get involved.

Oh, and if you don’t like me or think I’m a jerk or I talk too much, just donate to this guy.

The fundraising all goes to the same place although we seem to be in some sort of competition.  This is the photo he put on Facebook last night.  Yes, that is me.  No, that is not my quote.  If this quote raises funding for research, then yes, that is EXACTLY what I said EXCEPT, I definitely didn’t call anyone Mr. Strahan*.

Ben H

 

And if you’d like more info on Alecia’s Stem Cells, want to spy on how we’re doing, want to join our team, want to sponsor one of our walkers, want to donate, please go here AND read the post below this one for more ASC info. XO

* Team Hoffmanderson is an awesome team and I am extremely happy to call them friends.  I mean, they might not even be friends, but I’m happy to call them that.

 

Kicking It in NYC

ASC sign1Let’s face it, I’m really not sure there will be a cure for Type 1 Diabetes in my lifetime.  I do know though, I will absolutely be part of finding the cure for Type 1 Diabetes.  This dream, idea, vision of mine has grown with intensity as I’ve gotten older.  I’ve been a T1D for 34 years.  That’s a long time.

I became involved with JDRF, because of my parents.  JDRF was their calm in the storm after I was diagnosed in 1979.  JDRF was still in its infancy at the time, but now stands the largest charitable supporter of T1D research.  JDRF and the families my parents met, managed to give my family HOPE.  My parents passed this HOPE along to me.  At 6 years old, my parents showed me what it’s like to pour your self into a cause and to BELIEVE. (check out my Mom’s 4-letter word)

In 2001, I founded Alecia’s Stem Cells in New York City with a tremendous amount of help from my friends.  A lot of things have changed in my diabetes world since that time.  One thing that hasn’t changed though is that our team is still based on friends and family who are willing to sacrifice their time and money (and often lend their creativity). They too will BE part of the Cure.

asc dodgeAlecia’s Stem Cells has had teams walk in Queens, Manhattan/Brooklyn, Boston and Los Angeles.  Our team has raised OVER $200,000 towards JDRF’s mission to cure diabetes by funding crucial research!  This is incredible and this is because of YOU!  YOU too are part of the CURE.

 

This past November, I was asked to speak along with Michael Strahan at a JDRF NYC Fundraiser.  It was a fun event but most importantly, it gave me a chance to share my view.  I got to tell parents of T1D kids about my story.  How I’ve been diabetic for 34 years, about how I DO understand how they may be angry that there isn’t a cure yet, but how I am proof positive of how technology has changed and is advancing diabetes care and treatments.  I told them how I envy their children. I told them that the glucose monitors and insulin pumps I use along with their children simply didn’t exist when I was their child’s age.  I told how to check my glucose levels,I would pee in a cup and add some chemicals and that gave a glucose “range”.  THAT range that was flawed.  I showed off my Continuous Glucose monitor that I wore on my arm.  I explained how these technologies are not a cure BUT they are advances.  They are advances that come from critical research. Research is the key component of JDRF.

This June, I was honored to be voted to the Board of JDRF NYC.  At the same time, I also became the Coordinator of JDRF’s Adult Type 1 Group.  Both of these opportunities will hopefully enable me to take another step in my NEED to make a difference.  Government advocacy and peer-to-peer support?  Yes, sign me up.  There’s a third part to this news though.  I consider it my diabetes TRIFECTA.  I’ve started the process to participate in diabetes clinical trials.  Maybe Alecia’s Stem Cells should be Alecia’s Lab Rats?

So one last thought, I’m 40 years old now.  I think about how someday I won’t be here anymore, but hey, none of us will.  I wonder what my legacy will be.  I hope that my nephew and soon to be either niece or nephew live healthy and happy lives and have families of their own.  Maybe they will mention me as their creative aunt.  I HOPE they remember that I always followed my heart.  I REALLY HOPE they never have to worry about T1D in their own children.  I HOPE that someday they talk about how their aunt had a friend who told her one time that there are two types of people… victims, and ass-kickers and their Aunt Alecia was an ass-kicker and yes, she helped cure diabetes.

I am not willing to sit back and wait for change.  I will be part of it.  Be part of it with me. Grab your sneakers and walk with me.  Walk for the other 3 million people in the US who are also fighting T1D.  Walk for hope. WALK FOR MY HOPE.  Support our team. CHEER US ON!

You can join and/or support Alecia’s Stem Cells at: http://www2.jdrf.org/goto/AleciasStemCells

Xo,

Alecia the Ass-kicker

WALK 2012 - Brooklyn 1/2 way mark