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:

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And here’s another:

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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!

 

 

 

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.

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?

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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.

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

NO Change

Changes – Thursday 5/14 
Today let’s talk about changes, in one of two ways.  Either tell us what you’d most like to see change about diabetes, in any way.  This can be management tools, devices, medications, people’s perceptions, your own feelings – anything at all that you feel could use changing.  OR reflect back on some changes you or your loved one has seen or been through since being diagnosed with diabetes.  Were they expected or did they surprise you?

I read 2 of the posts this morning for the “Changes” theme while I waited at my retina specialist’s office.  I had an early appointment.  It was a gorgeous morning.  I was ready.  My referral however, was not.  I have some new doctors since I had to change insurance coverage.  When I worked with the insurance broker, there was ONE non negotiable for my medical team.  I keep my eye doctor.  No matter what, I keep my retina specialist.

When I was in my mid twenties I took a job in New York City.  Maybe a year into the job, I was sitting at my office drafting table with a drawing on a piece of graph paper.  I had an itch and rubbed my eye while looking at my drawing.  Absolute and complete horror hit me.  The graph paper turned wavy like that fisheye tool in Photoshop.  I uncovered my eye and looked again.  The graph paper looked fine.  I covered my eye with my hand.  The graph paper was wavy.  I moved my head.  The wavy lines moved.  If there is a stronger word than horrified, than I was that word. I had changed to New York doctors but I’d never changed retina specialists since I’d moved.  No way.  I saw the same retina doctor every year from the time I was a little girl and he was considered one of the best in Philadelphia.  Its all a blur now (ahhh bad joke), but I went to my parent’s and saw my doctor.  Yes, non proliferative retinopathy.  I had laser treatments.  I was scared out of my damn mind.  This kept up for maybe another year.  I had to switch to a New York doctor.  My Philly doctor was a big shot.  He recommended a doctor group in New York.  Only a few doctors in the group took my insurance.  The Philly doctor immediately named one of them as the guy I needed to see (see? Oh man, I swear I’m not doing this on purpose).  He told me he was young.  I didn’t want young.  I wanted seasoned.  Philly Dr said this NY Dr just spoke at a retina conference and the head of the NY group was the doctor for a D celebrity.  Ok.  I’d give it a try.

I saw the NY Dr in the late 90s.  Yes he seemed young.  He told me I needed more laser.  This scared me more.  I didn’t know this doctor.  He wasn’t the doctor who’d treated me for years.  Then he told me I had 2 options.  One was the current laser treatment protocol. The other was much more aggressive treatment.  Something new.  I am not doing justice to this story since my brain can’t remember all the technical aspects, but it involved using the laser to cauterize the bleeding vessels AND then to also treat other areas preemptively.  If other places were going to bleed, to make it so those places would be further away from my center of vision.  It made sense to me (sort of) and it involved a lot more laser than I’d previously had.  I could get worse before it got better.  I went for it.  I’ve lost count of how many times he treated me.  Sometimes a little laser, sometimes a lot.  Both eyes were involved.  He was so nice and enthusiastic and we’d talk design and he made it all seem so positive.  I would be there for hours and hours waiting.  Sometimes I cried afterward.  And then there was a time I didn’t need any laser.  And another time and another time.  That last time was over 10 years ago (I think 13).

So I was the patient today without a referral.  It took me forever to get someone at my new primary doctor’s office to answer the phone.  I was apologizing to everyone in the damn office, as I knew I was screwing up the doctor’s schedule (apparently I really wasn’t but I felt like I was).  Letters and numbers projected on a mirror, reading test, the wavy graph. I made lots of jokes.  Waiting.  Eye scans.  The room for the tracking laser tomography.  I walked in and called it “fancy”  the technician shot me a look (it couldn’t be less fancy of a room).  As she set everything up, I called it “exciting”.  Then an “adventure”.  She said, “well that’s one view of it”.  So I explained it to her.  If I consider this an adventure, that the equipment looks “fancy” and this is so freaking exciting, then its a positive set-up.  Everything is less scary when it’s an adventure.  She sat back and said, “Ok, let’s get you back on your fancy adventure”.

 

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There were some hiccups when I got to see my doctor.  They couldn’t get the scans to upload but when one of the technicians said, “There’s something wrong”, my stomach sank to my toe. (I thought they meant with my peepers, not uploading the scans).  My doctor showed me how great my eyes are.  How beautifully the laser from long ago worked. I saw the layers of my eyes and heard how thrilled he is with the results.  Then he said it,

“NO CHANGE”.  

He told me how he thinks all my exercise continues to help my eyes.  Then like everyone I now talk to, we spoke about cycling.  Seriously I have nothing else to talk about anymore really.  He is going on a cycling trip in Italy.  His kids are no longer kids.  And I walked out, dilated pupils like a cartoon character, and orange sunglasses I got for free at Food Bank event, I decided to walk the 30 blocks back to work.  I put on my music and George Michael’s Freedom ’90 song.  I know, I’m so old it’s ridiculous.  I kept the song on repeat the entire walk.  I was all smiles thinking about the theme of DBlogWeek being CHANGE today.  If you know nothing about the song I type of, read this: George Michael’s Freedom ’90.  It’s interesting, about his changing.  I walked with swagger.  I smiled at every damn person.  No Change!

I walked in the door of my office and took my iTunes off repeat.  Next up, Iggy Azalea’s ‘Fancy”.  My fancy, exciting, adventure to the eye doctor.  They won’t all be winners.  I don’t expect them to be and there will be many more bumps in the road.  But today, was a No Change.