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.

40th Birthday Party

40 years ago, my parents were told to take me to the ER and get my blood taken. I was 6 yrs old. It took 2 nurses and a questionable doctor 3 tries to get a vein. They held me down, I cried. My Dad took me to McDonalds for pancakes (with syrup, ugh) afterwards. 

That afternoon, my parents were on the phone, my Dad walked out the front door and sat on a rock (yes we had a rock garden, weird) and for the first time ever, I saw my Dad put his head in his hands and cry. The next day, with my little suitcase and teddy bear, my parents took me to Hannehman Hospital in Philadelphia. I learned the word “diabetes” and that I would have to take shots. In my 6 year old brain I thought the shots were like the blood draw the previous day and doctors would hold me down. For two weeks, I went to arts and crafts, practiced giving injections to an orange and slept in a room full of children with various ailments. I remember the boy in the bed next to me, Raul, who had a heart condition. His Mom cried a lot. There was a girl across from me who had been severely burned in an accident. The thing that scared me the most though, was that I wouldn’t get to go to school. I was very eager to start 1st grade but now, something was wrong with me, I was sick and I thought I was going to be sent away. 

My parents and relatives visited me everyday. At night, my parents would call on the pay phone to say goodnight. My Dad would tell me I needed to be brave for the other kids. I would try not to cry, I would cover my face, begging my parents to please bring me home. 

Type 1 Diabetes treatments and research have elongated my life expectancy. Although there are a litany of items I hate about T1D, I believe some of the best parts of me are based on the idea that I live on borrowed time. 

Outliving peers who’ve been on the same path makes for some incredibly hard feelings. Testing technology that stands to improve people’s lives is awesome yet extremely troublesome when one looks at the lack of access so many of us face. Diabetes is a tricky disease with no easy cure… yet. 

I haven’t fooled myself into thinking riding a bike will cure T1D, but certainly funds raised from walking and riding has directly impacted the fact that I am here. The eyesight i need to ride is proof of the technological progress and amazing doctors, in my lifetime. 

I’m the co-coach of my JDRF ride team this year. You’d be hard pressed to find anyone (including me) who thinks I’m a “good” coach. I’m not the technical person. Not even close. I care most about safety and that people enjoy the ride (in that order, safety FIRST). And I as I begin what marks my diabetes’ 40th birthday, I plan to live (and celebrate) with just as much vigor, determination and wild ambition as I guess I’ve always had but it’s tempered these days with a growing sadness for the increasing number of people who aren’t here with me. 

My role in the diabetes space has evolved over time and I’ve worn a lot of hats, jerseys, and a hospital bracelet with my first name misspelled, but one thing has never changed, and that’s my belief that we can help make a difference. 

Thank you for cheering me, and all of those affected with T1D, onward.

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.


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.


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!

img_5455 img_5527

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.



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.


Now, let’s celebrate! xo Alecia (AKA Type ONEder Woman… yes, the tiara has gone to my head)



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.


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

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
I can hear machinery
‘Blinding me with 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

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).


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



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.

bg test strip

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!


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?



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.





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.

bike name


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