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!

 

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.

PicCollage

Video Killed The Radio Star

Love that song (totally a product of my generation and I remember watching that video in my best friend’s basement as she had cable (!!!) and we’d play Barbies as we watched MTV videos).  I’m behind on updating JDRF Ride training information.

Lots of training stories.  Funny spin class incidents (I was the only attendee at a spin class in Dallas and got there 15 minutes early to make sure I got a bike… 5:45AM.  Only one).  Crossing fears off my list… riding in the rain?  Done.  Riding alone in the rain?  Done.  Riding alone in the rain across the Manhattan Bridge twice?  Done.  Riding alone in the rain across a bridge and actually finding Prospect Park?  Yep, done.

There have been some down times.  Problems with dehydration, low bgs, running out of energy to the point that I was actually falling asleep.  Dry heaving through Harlem off the side of the bike.

I have met with a nutritionist which was/is helpful.  I eat so much more now and after being salt conscious for years and years, I need to maintain an increased salt intake when I’m riding for hours.  Crustables are my favorite food.  Seriously favorite.  PB&J that thaws on my back?  YES, YES, YES!  Things I figured out on my own.  Who knew I’d like bananas and peanut butter?  I have 2 water bottles on the bike.  One is 1/4 Gatorade to 3/4 water.  The other is 3/4 Gatorade to 1/4 water.  Did I mention I can eat 1/2 a Crustable as I am pedaling?  Only half though.

As part of the AP Trial I participated in months ago, I did an interview for a medical/health website.  I thought the interview and questions were interesting but nothing ever came out of it.  They contacted me 2 weeks ago to get some additional footage of me in my normal life (specifically walking my dog).  Somehow we got on the topic of my cycling “adventures” (let’s face it, it’s all I talk about anyway).  They decided to film me on my bike.  No biggie.  Oh I get to wear all this Spandex madness (don’t forget the padded crotch and tush) on a video?  Well I can cross that off the list of things I’ve never done.  Great.  Really, terrific.  Spandex.  Oh this never gets old.

The night of filming, was brief (well except riding to the video spot with all sorts of craziness through Tribeca at rush hour… that was kind of crazy and I kept having to look at directions).  It’s a long story and yes I did end-up explaining to a police officer about the Artificial Pancreas (talked his ear off) but I realized that all these things are opportunities.  Opportunities to share, connect, and advocate.  The fella who was in charge (videographer?) and shot the video, I’d met months ago and we’d bonded about diabetes and the AP Trial and what his father has dealt with also having diabetes.  There were 3 interns from the website  In the down time, I got a chance to talk to them about the Ride program and why I’m doing this (and sharing Manhattan cycling adventures).  They were great and asked questions.  I gave one of them my phone when I’d arrived and asked, if she had a chance, to take some photos (I wanted pics of the GoPro cameras.  I fly Virgin America a lot and I am ADDICTED to their GoPro channel.  ADDICTED.  I get off those flights and want to balance my suitcase on my head, hang from a helicopter and and then jump off with my suitcase and use it as a toboggan down a snowy mountain).

I have no idea how she made this video with my phone.  Fascinated:

Hopefully this link works: IMG_2410-2

Otherwise, here’s one of her pics:

IMG_2436

 

And here’s another:

IMG_2437

The night I filmed, was the day the whole Crossbit Twitter irresponsibility/sadness hit the fan.  It weighed heavy on my mind.  After the pics, I went for a ride.  From the west side of Manhattan through Battery Park (southern tip) and then I sprinted up the East Side.  And as I huffed and puffed and dodged obstacles, I thought about how angry I felt.  Many reasons to be angry and sad to see T1s and T2s dividing themselves.   So I kept riding.

Only 14 miles that night, but probably my best training ride so far.

A life well lived with drive and fight, to me, is the best revenge.

Drive currently = ride.

 

 

Wordless Wednesday. Get Weird

Training continues. I made a spin class for myself. Alone. Many stares. Many. I keep taking photos. Big day this Saturday. Big ride this Sunday.  I liked this quote today:

“It had long since come to my attention that people of accomplishment rarely sat back and let things happen to them. They went out and happened to things.”

—Leonardo da Vinci (1452-1519). Artist, Inventor, Scientist

So far this week:

  

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.

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

 

 

 

Don’t Stop, Won’t Stop (My Dexcom Song)

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A super brief update from the Dexcom/insurance debacle.  I received a bill from the 3rd party (wait 2nd party?  Oo-la-la!  A fiesta!) that supplied my “new” Dexcom G4.  The bill was not for the full bazillion dollars but for the co-pay/prescription plan.  Interesting.  I also received my next 3 month shipment of Dexcom sensors.  Although I do NOT have it in writing (trying), it appears my Medical Denial was indeed overturned and it was NOT because of the 2nd or 3rd party supplier (it’s 2nd right?  Why am I so confused on this?) BUT because I went a little nutso and my doctor had a peer-to-peer review with one of the doctors from the medical insurance company.  Again I do NOT have this in writing (I do have about 10 copies of the denial letter though) but I’m willing to put myself out there and consider this a win.

WHEW!!!!

In other news, I am 61% to my JDRF Ride goal.  In 45 days, (how is this even possible so soon???!? I NEED MORE TIME) I will be riding 100 Miles in Burlington, Vermont.  I still can’t believe I’m doing this (well trying, I haven’t done it yet and my longest ride so far is 65 miles which did NOT go well… but more on that and my NEW game plan, maybe next week).

When I started Alecia’s Stem Cells (JDRF Walk team), in 2001, we collectively raised just over $7000.  Little did I know then how much the team would grow and even go on to walk in other cities.  Switching to the Ride program is like starting all over again.  I am cycling fetus.  Everything is new to me and there is just so much trial and error (and some crashing).  It has been a bit of a relief to not deal with organizing so many people and everyone’s travel plans but on the flip side, the training and time commitment to Ride are significant (read: A LOT).  Want to help me get beyond 61%?  Check out this PAGE… If you could share this link with other, I’d be beyond appreciative!

Cool tan lines courtesy of cycling gear!

bike hands

 

I See

I left an appointment last night (therapy or what I refer to as “Feelings”), walked out the door and turned right (East).  As I walked down the street, something seemed bright behind me but I was busy with my phone.  I turned the corner, and people were facing West, snapping photos with their phones.  I spun around and was surprised to see Manhattanhenge was still happening.  I thought it was over already and I had missed it the last few evenings.  I snapped a quick pic too and turned North.  At every intersection, I looked left (West) and there was always someone snapping a photo.  Many people stopped in the middle of the road (be careful New Yorkers).  I took a photo at every cross street too.  The 3rd intersection was THE Moment.  Blinding orange light.  So much more beautiful than the photo below.

Stop and look.

Stop and look.

I kept walking and looking left.  I realized I was smiling.  I was smiling because last weekend on my 55 mile bike ride (yes, I rode 55 miles on the bike…. AGAIN).  I had a brief conversation about diabetes and eyes.  I shocked a fellow cyclist by describing how much aggressive laser eye treatments I’d had 15 years ago.  As I walked and soaked in the changing views of Manhattanhenge, I kept thinking how easily I get caught-up in problems and life’s stress.  There are times that I forget how very fortunate I am. How important it is to embrace and celebrate the act of being grateful.  I kept thinking about this as I turned right (I zig zagged homeword) onto the same street as my church.

I heard from the Pastor of my church this week as he has not seen me in a while and was concerned.  I had emailed him back explaining that I am still alive, training for a 100 mile bike ride (God help me, no really, please God, keep me on the bike and upright), and that I had been away a few Sundays as well (you know when I’m not falling off the bike), and I skipped the part that there have been times when I simply didn’t feel like going.  As I walked past the church, thinking how I should really make some time to visit with the Pastor (he’s such a good, thoughtful man, even though he’s a Buffalo Sabers fan), I saw the sign outside.

church

Perfect timing.

This morning, I saw THIS ARTICLE and yes, the tears started flowing.  THIS is what I tested in the Artificial Pancreas clinical trial.  In summary, this version of the AP is headed towards commercialization.  Huge news along with the Bigfoot announcements this week.

Human clinical trials of AP and Bionic Pancreas systems are happening.  Human clinical trials of encapsulation are happening.  Human clinical trials of Smart insulin are happening soon!  I completely and totally understand the frustration of wanting the CURE, but I am grateful that huge steps in technology and better treatments are on the horizon and I am still around to “see” this happening.

Now, I just need to stay on that damn bike,  increase my stamina and get to my fundraising goal!