Not Too Late #NDAM

I posted this on my personal social media earlier today but I realized being so focused on other issues, I have not embraced National Diabetes Awareness Month and it is time:

A year ago, someone I admired and respected personally and professionally, handed me the biggest insult of my adult life, and it was tied to the fact that I have T1D, an autoimmune disease. I gritted my teeth and a few weeks later rode 104 miles in the Tucson desert to help cure T1D. I heard from that person yesterday. I still respect and admire them but far less than I did years ago. Then last night, I saw this photo of myself. My face says it all, I could not have been prouder or more excited to speak at the NIH this summer. 

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And it got me thinking, if at 6 years old, my body had the superhuman strength to annihilate its own beta cells, can you even begin to imagine what I’m capable of now? Happy feisty wishes to you all for National Diabetes Awareness Month. #NDAM

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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Making Faces

The countdown is on!

I have been a participant in the US Senseonics 90 day implantable continuous glucose monitor clinical trial since March.  7 days left.  Here’s the info and latest announcement via DiaTribe .

I’m also back on the bike – ish.  My self led training rides have been more like meandering training tours (oh look! Grafitti…) and in the 20-25 mile range only, but I’ve got time (denial).  The Coney Island Art Walls are almost done!

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Last weekend I sprayed myself with SPF 30 but as I’ve been having trouble keeping the Senseonics sticker and transmitter in place (especially when I exercise), I was cautious to dab sunblock near my robot arm but not spray or slather.  That was unfortunate.  This interesting tan-fail has happened twice now.  The result looked like this post-shower.  So sexy, no YOU stop it!

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And this 4 days later:

3 days later sense burn

7 days left!  After they remove the implant I will have stitches.  Since I suspect I will have this cool and awesome tan line for a while longer, I have been thinking about how I will rock my new look.  This is the design I have chosen:

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Like those wheatpaste girls from Gold Loxe say “Just Right”

Just right bike.

 

 

 

 

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

Advocacy TODAY.  ‪#‎JDRFGovDay‬

Today is a big day.

More than 170 JDRF Advocates are currently (today and tomorrow) meeting with Members of Congress in Washington DC to support the ‘Medicare CGM Access Act’ (H.R.1427 and S. 804).  To deprive seniors of CGM technology can have devastating results and is financially costly. Medicare does not consider CGMs to be ‘medical’ necessity. Over 95% of health insurers DO cover CGMs.

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Thirty-seven Members of the Senate and 184 Members of the House of Representatives are currently signed-on in support of bipartisan legislation to provide Medicare coverage of CGMs for people with diabetes. This legislation isn’t just for our seniors however – it will in fact benefit everyone – by helping to pave the way for reimbursement of next-generation artificial pancreas technologies when made available.

Make a difference today:

  • Email your Senators. This form asks your Senators to co-sponsor S. 804, the ‘Medicare CGM Access Act.’
  • Email your Representative. A form that asks your Representative to co-sponsor H.R. 1427, an identical House companion bill.

EVERYONE who has ever been touched by T1D can help advocate.  If you have done this before, PLEASE do it again.

And I beg you to share this information with others.

Reach out, take action, create a better future.

Buddy and fellow T1D advocate Brandon Denson. http://www.diabetesforecast.org/2013/jul/brandon-denson-pro-football-player.html?referrer=https://www.google.com/

Buddy and fellow T1D advocate Brandon Denson.

 

 

Off and Running (not cycling)

I’m currently out of the blogging and twitter loop but 2 quick items:

Sanofi, JDRF, Glucose Responsive Insulin.  Yes, please and let’s keep things moving forward!

I should have posted this long before now but JDRF New England is holding their TypeOneNation Summit tomorrow in Boston.  You can find the registration info here and the programming info here.  They are expecting 675 people.  How exciting!  I will also be speaking along with some incredibly amazing people. (675. so. many).

As I’ve written before, JDRF Type One Nation Summits are an incredible opportunity to learn more about advances in T1D, connect, and meet some remarkable people.  There is programming for everyone… kids, tweens/teens, adults with T1D, parents of T1Ds, and spouses/significant others.

My presentation is: Closing the Loop with Sneakers and Spokes: My T1D and JDRF Story.

This is one of my slides.

If nothing else, I bring the pizzazz (and enthusiasm).

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See ya soon Boston!

“I don’t want to get to the end of my life and find that I just lived the length of it. I want to have lived the width of it as well.”

—Diane Ackerman
American Writer

Artificial Pancreas With Some Heart

Recently I was contacted by a reporter from my local FOX affiliate about a story she wanted to cover on the Artificial Pancreas for a segment called The BIG Idea.

Tonight, the piece aired on our local 10pm FOX 5 NY news.  My endocrinologist and the Chief Mission Office for JDRF were also interviewed.  It’s amazing to witness how so much footage is made into such a short but thorough news segment.  I was happily surprised by the accuracy of the story and pleased with how they explained the technology involved.  I owe a huge thanks to Kerry Drew and especially the editing team who made this come to fruition.  I have also decided I look exceptionally tired and should start going to sleep earlier.  Seriously though, I’m honored to have had a voice in spreading this story.  This AP technology is getting closer!  The UVA algorithm I tested in my first AP trial is now slated for 3 month AT-HOME trials which has happened in the time since they filmed this news segment.  Keep pushing forward (and get some sleep).

Here’s the video:  FOX 5 The BIG Idea.

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Thanks to my friend Deb who is my steadfast T1D supporter and puts together pics with amazing speed!

Today was full of surprises, many, but the one that sticks out the most is a moment right outside my office.  I saw it upside down as I walked down the street and it took my breath away.  It was not this shape a few hours later (just a wet blob).  I stopped a man who was about to walk across it and showed him how the snow melting on top of the scaffolding had dripped into the shape of a heart.  He smiled and told me how the cord for his computer sometimes makes the shape of a heart.  I told him how I tend to see a lot of hearts and I its a great thing.  Powerful heart moments… or possibly stranger danger (me, not the guy). xo

Snow drip love

Snow drip love

Bike Heart

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

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

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

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

Yep.  Tears a plenty.

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

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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!

 

 

No Casper in this Story

Like most people with diabetes, I often find myself disgusted, upset and shaking my head over diabetes publicity, often.  The Crossfit CEO debacle sadness me on so many levels.  When people don’t seem to think the Medicare CGM coverage (lack there of) doesn’t involve them, I can’t fathom how they don’t think it affects ALL of us.  Believe me, it does.  I have about 10 other things I could add to this list off the top of my head, but I won’t.

I was in an Artificial Pancreas Clinical trial.  No news there.  I was asked to share my experience with EverydayHealth.com along with the doctor who oversaw the trial (who is my endocrinologist).  I’ve written about this before.  Yesterday, the story I filmed with Everyday Health posted (is that the word? “posted”?).  Sure my first name is completely botched.  Mangled.  It is far more exotic than my name actually sounds so I’m embracing it.  The pensive look to the Hudson river makes me giggle.  Very deep in thought.  But the thing is, it is stories like this, stories that help explain diabetes and where things are going that give ME hope.  I am glad to see the incredible minds from UVA and Mount Sinai getting credit.  I love that this is positive.  I love that this EXPLAINS and educates.  I love that I can send this to people who have donated to JDRF and explain that a JDRF grant made this clinical trial possible.  I love that TypeZero technologies exists.  I love that there is a video on the internet where I pretty much admit to wanting to be a klepto.

Here you go:

Diabetes?  Now there’s An App for that. 

So take THAT, negativity.

Thank you to all the people who devote their time and energy to getting this technology closer to reality.

What a week!  Hello Blue Moon!

Buenos dias, mi amigos!