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. 

jdrf-ndam

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.

img_5383

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.

img_5486

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.

 

14956392_10208286129219093_7394039352425602657_n

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.

img_5427

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

fullsizerender

ww

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).

IMG_0483

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

Bike Heart

Pinata heart

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

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Continue the Discussion

A quick note:

I saw an excellent play last night (thanks to 2 JDRF friends who told me I “had to” see it) which was part of the NYC Fringe Festival.  “Type What Now” was written, produced and performed by Jessie Bear.  Incredibly thought provoking and what I hope remains an ongoing discussion regarding perceptions of Type 1 and Type 2 diabetes.  On an even broader scale, the show tackles issues of body image and has appeal far beyond the diabetes community.  After laughing and crying throughout the performance, I was thrilled to hear it is a Fringe Fave (apparently the short run has been very popular) and an additional show has been added for this Sunday at noon (8/30).  If you are in the NYC vicinity here are the details:

Fringe Fave – Type What Now 

If you do not have the opportunity to see the show but are interested in a review, I think this pretty much nails it (From Theater is Easy).  Interesting right?:

Theasy Review of Type What Now

I agree with that review wholeheartedly.  Good conversation and challenging one’s own perceptions… LOVE it.

 

 

 

 

 

 

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!

 

The Caboose. 36.

In 36 Days I will be attempting to ride 100 Miles in Burlington, Vermont.

Scratch that.

In 36 Days, I WILL ride 100 Miles on my bike in Burlington, Vermont.

Today is my diaversary.  Diagnosed with T1D 36 years ago today.

I figured out this mathematical magic this morning… 36 more days til Ride and and 36 years of T1D on the same day.  That’s gotta count for something right?

Here’s the newest bit of “flair” in my fundraising plans.

Ok, you knew I was going to figure-out a way to decorate this bike right?  I used to bedazzle Dexcom arm sensors.  All these warnings about creating drag on the bike… I’m already the slowest one folks.  If I’m going to be the caboose, I’ll be a brightly colored, glittered one for sure!

BIKE NAMES copy

Here’s my social media fundraising idea (scheme) for today:

YOU are going on The JDRF Ride! Say WHAT?!?! For everyone who has donated to MY riding 100 Miles on 7/25, YOUR name (or message) is going ON the bike! Come with me! This bike is all about inspiration, funding vital research, and a LOT of Alecia flair. Where’s the glitter paint? ‪#‎gettingcrafty‬ #36 ‪#‎diaversarydream‬ 

-> ****MY Dream**** <- (So close to beating the 2001- first year Alecia’s Stem Cells total).

I have had a bit of a heavy heart lately.  When I think about this diaversary stuff, I have uncharacteristically lacked feelings on it.   I haven’t been upset per se, but I have lacked enthusiasm.  My friend posted this photo today.  This certainly turned my mood around.  Note: I definitely do NOT like chocolate mint Cliff bars.

10639588_10105378013499653_8117084080210497807_n

Also if anyone has a bike helmet covered in LED lights and rhinestones, let’s talk.

 

 

 

Southfork Ranch (bonding with Dallas)

My bond with Dallas:

Sue ellen AW

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.

Stemmy

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”):

AW Stems

 

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?

IMG_1548

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.

Dex AW

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

Painful Secrets?

Day 2 of Diabetes Blog Week #Dblogweek:

It is Diabetes Blog Week.  Karen at Bitter Sweet Diabetes wrote (in 2012?), “If you don’t have a blog but have thought about starting one, now is the perfect time”, so I did (which was my first post).  For more information on Diabetes Blog Week please check this out. And thanks Karen for putting this all together.

Keep it to Yourself 
Many of us share lots of aspects of our diabetes lives online for the world to see.  What are some of the aspects of diabetes that you choose to keep private from the internet?  Or from your family and friends?  Why is it important to keep it to yourself?  

I started writing my response to these questions, about my dating life and thought maybe 10x that I should go with this from a different angle or just not at all, but I work best with a stream of consciousness approach and heavy doses of unedited “winging it” so here goes.  I was in a serious relationship when I started this blog years ago and my then partner was referenced in my early posts, often.  I have not tackled dating here for a multitude of reasons, and diabetes is not the reason I didn’t find “the one” (please note that there is an eye roll that goes with typing that, “the one”), but diabetes has played a role in my relationships, to varying degrees, along with many other non-D aspects of life.

There is something specific to dating that has occurred with me in recent months.  If you have followed me on twitter, or you know me, you might know I participated in an Artificial Pancreas trial back in November.  It was pretty incredible.  Since that time, I wrote about my experiences for JDRF, A Sweet Life, have spoken at various JDRF Type One Summits, spoken on behalf of Mount Sinai hospital, did interviews with some diabetes publications, ended up on the local news and witnessed a newspaper interview I did, get picked-up internationally.  Wow.  Sounds braggy right?  I agreed to all these things for the reason that I want people to understand and learn about T1D.  I want to help further the cause and if my body and my time enabled Artificial Pancreas research to progress, then I can use my mouth and my brain to explain both my experience and also why I believe research and diabetes research funding are so damn important.  I could go on and on, but that’s not the point of today’s post.

What I considered but didn’t really fathom, was Google.  I don’t hide the fact that I’m T1D (or PWD, but I never remember to use that terminology).  I have been google-able for a long time.  As far as T1D goes, my JDRF Walk team has had fundraising stuff all over the damn interwebs for years.  There is no hiding and that’s not my desire anyway.  The press over the AP trial though, I didn’t/don’t control.  An article that says I’m haunted by T1D (Seriously? I want ghosts if that’s true.  I want ghosts that can go do stuff for me… pick up dry cleaning, walk the dog, give me a massage and go scare my obnoxiously loud neighbors, etc).  According to a reporter, I haven’t had a good night’s sleep in 35 years (I was diagnosed in 1979.  I must look like a zombie!).  I am a horrendous sleeper but not just because a Dexcom has beeped at me periodically over the past few years.  I live in Manhattan.  It’s effing loud here, people. Or my favorite, that I’ve “suffered” with T1D since I was a child.  Yeah it hasn’t been a walk in the park, but the word “suffered’ is drop-kick worthy to me. You get the point.  Sometimes the facts were corrected in online press, but printed press is, well… printed.  And now when it comes to dating, and even in some recent business situations, people actually Google me.  Instead of explaining to someone new that I’m T1D and what that entails, the internet gives them a slew of information, not necessarily spun how I would introduce it and sometimes not quite accurate.

Can I have Space Ghost?  Chiseled jaw and funny? Check.

Can I have Space Ghost? Chiseled jaw and funny? Check.

I have to admit though it isn’t all bad news for dating.  I went out with someone a while ago who I had to keep rescheduling our get togethers (yep, I’m good like that).  At one point, in a casual conversation, he text me that he had Googled me.  Oy.  He made comments about my career success and some photos (hey thanks), but he never mentioned T1D.  I knew he knew.  So I waited, until I actually wasn’t rescheduling dates and while we were out, he seemed to bring it up -ish, you know, Google and I helped him out.  We discussed T1D.  He clearly did some homework (huge plus in my book) and finally asked where I put my pump.  I pointed between my boobs (I rarely wear my pump there but the dress I was wearing had no other good spot).  Nothing like an ice breaker where you have actually encouraged a guy to stare at your chest.  And then it happened, I know this sounds like a Romantic Comedy, but as soon as I pointed to my chest, I went over my target blood glucose (ps I’m on an Animas Vibe and the screen was facing outward) and my pump beeped and then lit up!  Right through the dress, a blue light. Yep so I had a guy staring at my boobs and then my chest beeped and lit up like I’d swallowed a strobe light.  After explaining, “no I did not do that by pointing at my chest”, it was good for some laughs and then I’m sorry to say, unlike a romantic comedy, he wasn’t “the one” either, but the two other times we went out, I was truly amazed at how he showed-up clearly having done more and more T1D research and we have actually stayed friends since.

There have been some, what I consider, bee sting moments too (well more like a wasp).  In a way, I am relieved I can weed out the “possibles” from the “toss to the curbs”, thanks to some AP press, but let’s face it, those bee sting “Oh Wait,  You’re Sick?  I can’t handle sick!”  moments happened both in my 20s and 30s.  They were rare, but yes, they happened and nothing has ever been as shocking as a 3rd date I went on in my late 20s where the guy went nuts on me in a restaurant about how I misrepresented myself and he doesn’t deal with sick people.  It was awful, he had had a few drinks, got louder, wouldn’t shut-up and I left in tears.  The end of that story though is I’d been set up with him by a friend and a year later she told me he had testicular cancer.  I wouldn’t wish that on anyone, even a boy who made me cry, but maybe he has a different perspective on “sick people” now.

So there you have it.  This is one of a few things I don’t talk about online and for the record, I would do another AP trial again in a heartbeat.  I would do all the press in the world and write as many stories about it as I could as I believe so strongly in research.  The clinical trial experience is like nothing else I’ve ever done and it opened my mind and my heart to the people who are trying to bring this technology to all of us haunted by T1D (sorry I couldn’t resist).  I might get a Casper cut-out on my bike for the JDRF Burlington ride.

And as for the question of why this is important to keep to myself, I just realized it isn’t, is it?

Print