Stars Align in the Advocacy Sky

Martin and I met early last week. We spent a day on Capitol Hill meeting with various representative offices as part of Diabetes Patient Advocacy Coalition DPAC, addressing issues/legislation pertaining to diabetes.

Between meetings, we talked about the clinical trial I’ve been in and devices I’m using.
Martin has lived with T1D for 66 years which is by all accounts, especially Senator Markey’s office, quite amazing, especially considering how crude treatments were when he was diagnosed.

In one of our meetings, Martin spoke about having been one of the clinical trial participants of laser treatments for diabetic retinopathy in the 1970s (‘74). I felt a lump in my throat.

I spent many years feeling ashamed of my own diabetes complications (I didn’t do a “good enough” job). I was just starting my career in design, a visual field, in the wonder of New York City. The diagnosis was terrifying. A brilliant doctor gave me 2 treatment options. I chose a new technique involving very aggressive laser therapy. Many rounds and a few years later, my eyes stabilized.

Now, I get to give research updates and motivational talks for JDRF and I am asked to speak at medical schools about T1D. In this roll, I show photos of the inside of my eye. I explain the laser scars and how my eyes compensate. I encourage (beg) people to get involved in clinical trials, and how I do them for ONE specific reason. I do them to pay-it-forward. I say how I will never get to meet the people who tested retinopathy laser treatments. Some of the first participants went blind immediately. I NEVER say what I was once told, that I would never meet these “testers” because they had died already.

On Tuesday, I learned my talks will have to change a bit. Not only did I meet one of the trial participants whose actions have given me the gift of sight, but I finally got to say, “thank you”. I tried to explain this to New Friend Martin, but I couldn’t get the words out, so outside a Senator’s office, we stood there hugging and crying.

On World Diabetes Day and everyday, Martin, I thank you, again and again, I thank you. 

Bonding outside Elizabeth Warren’s office. Martin was the true star of my day.

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

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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

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!

 

 

Southfork Ranch (bonding with Dallas)

My bond with Dallas:

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1.  The TV show Dallas premiered in 1978.  A few months later, I was diagnosed with T1D.  Yay the 70s!

2.  Who shot JR? Was a cliffhanger which became a pop culture phenomenon.  The episode where the shooter was revealed was the second highest rated prime telecast ever (it was Sue Ellen’s sister who revealed she was pregnant with JR’s child and used that to keep herself out of prison).  During the time this episode aired, I too was taking shots (well of insulin… no bullets were involved).  Shots!

3.  Season 9 of Dallas was revealed to be a dream sequence of Pamela Ewing’s (she thought Bobby died.  It was awful.  When she “woke-up” the next season, she freaked when she found him taking a shower).  Bobby’s “return” (he left for a season but was persuaded to come back due to declining ratings) effectively eliminated everything from the previous season.  I wish T1D was a just a dream, but alas, my dream is to be part of The CURE, and eliminate T1D.  On a side note, I’m a huge fan of long showers too!

4.  Dallas won 4 Emmy awards.  I’ve won 4 Best of the Betes Blogs (so close to an Emmy… if only the blog were a TV show).

5.  Sue Ellen was a former Miss Texas.  Sierra Sandison is a fellow T1D and a current Miss Idaho (this part will make sense in a minute).

6.  Dallas was know for ending every season with a cliff hanger.  Diabetes is a series of ups and downs too (especially with blood glucose levels)

7 . I was once lost in South Fork… well the south fork of Long Island.

8.  Dallas originally aired on Saturday nights, was switched to Sunday nights and then switched to Friday nights where it stayed, until the series ended in 1991.  I will be in Dallas this Friday night to attend and speak at The JDRF DALLAS Type ONE Nation Summit on Saturday 6/6.

Incredible right?  So are you anywhere near Dallas/ Ft Worth?  Do you have T1D?  Do you love someone with T1D?  Do you care about someone with T1D?  Are you enemies with someone with T1D (ok that part’s a joke.  Cheeky.)?  Here’s the Registration Info (yes, FREE).

JDRF Type One Nation Summits are happening throughout the country.  If you would like to find one near you, click HERE.

These Type One Nation Summits create some really amazing opportunities and I have met such amazing people and lots of new friends.  I’ve been to 2 so far (3’s the magic number right?  Yay Dallas… or should I say Yee Ha?).  The presentations and speakers are different for each Summit.  In Dallas, there will be an outstanding group presenting and also hosting a series of break-out sessions.  The list is available HERE and includes Miss Idaho, Sierra Sandison who brought so much awareness to diabetes with her #ShowMeYourPump campaign and also professional snowboarder and founder of Riding on Insulin, Sean Busby.  You can also hear me attempt to say, “Mission Message” which is absolutely impossible to say 3 times fast.

This post was a bit more of a stretch than the Britney Spears/Vegas post but hey, the “shots” part was pretty solid.  Just remember, EVERYTHING’S bigger in Texas y’all.

 

 

 

 

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”):

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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

Oops!… I Did It Again

What a Dopey mistake.  Downright Goofy.  In my previous post describing my bond with Britney Spears, I forgot one of the more important parts…

Britney was in The Mickey Mouse Club….

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Found somewhere on the interwebs (I think).

AND I was a LAB MOUSE in an Artificial Pancreas trial (and yes, I have pair of sequined Minnie Mouse ears with my name monogrammed on them)!

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Again, I will be speaking about my time in the AP Trial, some insights and fun stuff at JDRF Nevada’s TypeOneNation Summit THIS Saturday.  Like I said in the previous post (me + Britney), the schedule on Saturday is incredible AND there are MORE TypeOneNation Summits happening throughout the country which you can find right HERE .   My buddy Brian and I will also be sharing our experience on March 21st at JDRF Long Island’s TypeOneNation Summit .  For my Long Island post I’m considering another comparison post with either Billy Joel, Dee Snider or Lindsay Lohan.  This is a tough decision… I may combine all three and toss in Busta Rhymes too.