Paths Crossing – The BETES

There’s this woman who’s path and mine continually cross, more than she actually knows. It involves a whole substory from Spiegeltent (love) in 2006 to ringing in the New Year at La Soiree in 2014 (both were cabaret/vaudeville shows in NYC).  It’s a bizarre story but this woman, Marina, and I keep crossing paths in T1D Land too.  We have friends in common, are sometimes at the same events but never have more than a few minutes to chat (I did get to see her in action once at a JDRF TypeOneNation Summit in Long Island and was intrigued).  I follow her on all sorts of social media platforms (clearly, I’m a stalker), and with all of that said, I am quite disappointed I will not be in NYC this coming weekend to see her work with The BETES Organization.  So instead of trying to describe this myself, Marina sent me some information (she is the Founder, Executive and Artistic Director of The BETES Organization), and I share it with you below:
Our work is about the lived experience of living with chronic illness- the mental health, the emotional well being, and the social. Our programming currently focuses on the Type 1 space.
 
Whatever your story is – coming to understand and express the rewards and hardships of living with a chronic condition, surrounded by community. The act of expression gives validity to our narratives, and strengthens all of our voices, simultaneously helping those who we are surrounded by better understand the patient experience, strengthening communication and building compassion.
 
What we add to the mix is the transformative power of puppetry- suddenly, all of this invisible stuff has form and shape, and we can all see it, talk to it, cry and laugh at it.  Its a powerfully unique creative tool.
 
Our honorary event co-chair is Dr. Henry Anhalt, DO of T1D Exchange
Our honorees are Dr. Jason Baker, M.D. of Marjorie’s Fund and Dr. Barbara Anderson, PhD.
 
The event will hold a 45 minute section of our creative, participatory programming followed by a heated discussion with a leading panel of clinicians, advocates and patients, and will be followed by an award ceremony for our two honorees.
This is in-between a wine reception with a top-notch live jazz trio.
Here are the details:
Event: The Patient Voice 2016: Bridging the #Diabetes Gaps
Date: Sunday March 20, 2016
time: 1:30 – 5:00 p.m.
Location: 417 e. 61st street, Manhattan
3 minute video: http://wi.st/1QpMu08
event registration page: http://bit.ly/PatientVoice
And click HERE for more general information on The Betes.

Advocacy TODAY.  ‪#‎JDRFGovDay‬

Today is a big day.

More than 170 JDRF Advocates are currently (today and tomorrow) meeting with Members of Congress in Washington DC to support the ‘Medicare CGM Access Act’ (H.R.1427 and S. 804).  To deprive seniors of CGM technology can have devastating results and is financially costly. Medicare does not consider CGMs to be ‘medical’ necessity. Over 95% of health insurers DO cover CGMs.

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Thirty-seven Members of the Senate and 184 Members of the House of Representatives are currently signed-on in support of bipartisan legislation to provide Medicare coverage of CGMs for people with diabetes. This legislation isn’t just for our seniors however – it will in fact benefit everyone – by helping to pave the way for reimbursement of next-generation artificial pancreas technologies when made available.

Make a difference today:

  • Email your Senators. This form asks your Senators to co-sponsor S. 804, the ‘Medicare CGM Access Act.’
  • Email your Representative. A form that asks your Representative to co-sponsor H.R. 1427, an identical House companion bill.

EVERYONE who has ever been touched by T1D can help advocate.  If you have done this before, PLEASE do it again.

And I beg you to share this information with others.

Reach out, take action, create a better future.

Buddy and fellow T1D advocate Brandon Denson. http://www.diabetesforecast.org/2013/jul/brandon-denson-pro-football-player.html?referrer=https://www.google.com/

Buddy and fellow T1D advocate Brandon Denson.

 

 

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).

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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

Later.

“You’re here awfully late.”

I heard a voice behind me as I locked the office door behind me.

Wednesday was a long day and I was on a call that took much longer than expected.  I looked over my shoulder to see the man who worked across the hall walking to his door.

We made small talk, I didn’t even remember his name (I actually don’t think I ever knew his name) and then he told me how he’d seen me on Fox news the other night.  He thought I did a good job, so I explained how I looked tired and the bags under my eyes were bigger than my purse.  Self depreciating humor, my specialty.  He then said how he had no idea I had diabetes.  Yes, I do indeed.  He told me he has “sympathy” for me and then corrected himself and said “empathy” and then explained he didn’t quite know the word (some sort of -pathy I assume) but again, he had no idea I had diabetes and that it’s great I have this new device.  I explained how I don’t actually have the Artificial Pancreas I tested in the story but how it’s promising technology and how motivated I am that it’s on the horizon.  That I’m thrilled to see the technology getting mainstream press as there will be hurdles to bring it to market and people need to help push this technology forward.  I started to leave and then he told me how he knew someone with diabetes.  Knew, as in past tense. I immediately “knew” there was zero chance that this person he spoke of was miraculously cured, but instead, they were deceased. Not my, nor any other person with T1D’s, first time at this conversational rodeo.

He pointed at his lower leg as he explained how his diabetic former classmate had his leg amputated and then pointed at the other leg, then he pointed to the top of his thigh as he explained how this fellow apparently had both legs amputated at 2 different spots. I possibly mumbled something about how I was sorry to hear that and how important it is to help and advocacy.  He told me how his classmate smoked and how it was a lifestyle thing in the South.  Hmmmm.  I let that go.  I wanted to leave.  He then added that his classmate had a GoFundMe page because he needed a special cart at one point and how they had all contributed to it.

The conservation wound down, I left and walked a block and a half to the subway.  I thought about diabetes and 37 years of these moments and all the people I know with diabetes and how we all live with this work called diabetes.  We keep trying and all I kept seeing in my mind was this man, who’s name I don’t know, in his bow tie telling me about leg amputations as though that’s a perfectly normal thing to tell someone with the very same condition because they “seem” to be doing so well.  Like it was gossip.  Well I knew  a man…  The lump was in my throat as I started down the steps of the subway and the tears didn’t start until I was standing on the platform, waiting for the train.

I text a friend and told him to keep riding bikes and training people.  I happened to have therapy that night (not for my shoulder but for my brain) and my outline to talk work, personal life, family was pushed aside because I needed to talk about how I felt as I left the office.  I cried/talked as I relayed the story.

The next morning, I was surprised to still be upset.  Hours later, I realized I was upset with myself.  I complained to three friends already, I talked-it-out, and it was time to let it go, and that was the problem.  TIME to let it go?  I’m sure there will be people who disagree with me, but letting it go suddenly felt like saying it was all ok.  The 18 year old version of me who barely talked about T1D nagged at me.  Make this right.  And then I over analyzed the entire thing and then I was so damn busy I never got across the hallway.

Today I went across the hall (I did find out bow-tie’s name) and asked if he had a few minutes to chat.  I explained that the other night, I think I did a disservice to myself and people with diabetes.  His eyes got big.  I explained how I knew he didn’t mean harm when he told me about his high school classmate who’d passed away or about his numerous amputations but that it was upsetting to me.  That the story he told me is part of the worry I live with everyday and that I think, and hope, he has a better story to tell now.  He apologized for upsetting me and I continued that the next time he meets someone who’s diabetic, he can tell them a better story.  He can tell them about this woman who works across the hall and how she’s been in clinical trials for technology that potentially could reduce some of the stress of diabetes.  How that woman was on TV to share information about this technology.  That she is an advocate and works like crazy to spread awareness and raise funding and that she is just one of many people working to make this one part of the world a better place.  And then I added how truly sorry I am about his classmate.  He stood up and he hugged me.  Yet again, I did not see that coming.  He talked some more about people in the South and I left it at that.

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Artificial Pancreas With Some Heart

Recently I was contacted by a reporter from my local FOX affiliate about a story she wanted to cover on the Artificial Pancreas for a segment called The BIG Idea.

Tonight, the piece aired on our local 10pm FOX 5 NY news.  My endocrinologist and the Chief Mission Office for JDRF were also interviewed.  It’s amazing to witness how so much footage is made into such a short but thorough news segment.  I was happily surprised by the accuracy of the story and pleased with how they explained the technology involved.  I owe a huge thanks to Kerry Drew and especially the editing team who made this come to fruition.  I have also decided I look exceptionally tired and should start going to sleep earlier.  Seriously though, I’m honored to have had a voice in spreading this story.  This AP technology is getting closer!  The UVA algorithm I tested in my first AP trial is now slated for 3 month AT-HOME trials which has happened in the time since they filmed this news segment.  Keep pushing forward (and get some sleep).

Here’s the video:  FOX 5 The BIG Idea.

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Thanks to my friend Deb who is my steadfast T1D supporter and puts together pics with amazing speed!

Today was full of surprises, many, but the one that sticks out the most is a moment right outside my office.  I saw it upside down as I walked down the street and it took my breath away.  It was not this shape a few hours later (just a wet blob).  I stopped a man who was about to walk across it and showed him how the snow melting on top of the scaffolding had dripped into the shape of a heart.  He smiled and told me how the cord for his computer sometimes makes the shape of a heart.  I told him how I tend to see a lot of hearts and I its a great thing.  Powerful heart moments… or possibly stranger danger (me, not the guy). xo

Snow drip love

Snow drip love

Where’s My Passport?

Dear Ms. Oh Come On Now (<- me),

We currently cannot offer you health insurance coverage because you were unable to provide proof of being a US citizen or national…. 

Errrrrr, what?!?!?

My hardy har not-so-har-at-all joke about marrying for health insurance and trading with someone who needs a green card, doesn’t even make sense anymore.  Joke’s on me?  Que?

After tracking down the insurance broker, he assured me he’d already taken care of this and the letter must have gotten crossed in the mail.  Hmmm.  No bueno.  So he knew already and solved this problem how exactly?  Sheesh, this just keeps getting crazier.  My favorite part though is the company that sent the letter was my SAME insurance carrier a year a and one month ago.  Do they think I renounced my citizenship since then?

Does anyone know what language my name is on on this coffee cup?  Maybe it’s a key to my mysterious country of origin?

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Resolve

Do your New Year’s resolutions involve any ONE of the following?
1. See new places.
2. Embrace new adventures.
3. Make more friends.
4. Improve your physical fitness.
5. Improve your mental fitness.
6. Go on an incredible vacation.
7. Try something new.
8. Give back.
9. Do something AMAZING.


45% of Americans make New Year’s resolutions.

12% attain their goal.

If ONE of the items above is YOUR goal, I know how you can be in the 12%. 

CLICK HERE! 

Set a calendar reminder for noon on 1/20, the first day of regstration for the 2016 JDRF Ride. 7 amazing locations, varying terrain options, and many distances available.  

Coach Ross keeping me focused.

Coach Ross keeping me focused.


Happy New Year!

A Frozen American Girl (give away)

*PLEASE NOTE: THE GIVE-A-WAY PORTION OF THE POST BELOW ENDED ON 1/6/16… the frozen shoulder is starting to get better, or shall I say “thaw”? Thanks! 

I keep starting and stopping a post I’ve been writing about how I was diagnosed with Frozen shoulder a few months ago.  It’s another bizarre complication of T1D and I did not have an easy time getting it diagnosed (2 doctors thought it was a partial tear of the rotator cuff although I suspected frozen shoulder but they thought I had too much mobility for it to be frozen), 3 failed MRI’s (it was impossible to keep my arm still at that weird angle for so long), and the absurd amount of time I had to wait to get into physical therapy (insurance, referrals, etc).  2 things seem to have accelerated the “freeze” this past Fall… I started boxing again and the trainer kept having me do push-ups on a strange angle and the fact that I ride my bike in Manhattan and have to keep reminding myself to loosen up and hold my shoulders down (I suspect I ride looking like I’m holding on for dear life… because I AM).

Due to this insurance mess, this morning was my last session at physical therapy.  I still have more sessions to go (pre approved) but can’t use them since my plan is being discontinued (12/31) and will have to start this process all over again next month with new insurance.  GRRRRR.

Iontophoresis? Yes please!

Iontophoresis? Yes please!

This week I received a return check from a deposit I had to put on my home many, many years ago.  I was quite surprised and decided 1/2 would go to something special.

When I left physical therapy this morning, there were police barricades every which way and I was redirected to walk across Rockefeller Center.  Big tree, tourists a’plenty, and my path blocked.  There were hundreds of officers standing in line on 5th Avenue.  Today was the funeral of NYPD Detective and Air National Guard technical sergeant Joseph Lemm, who was killed by a suicide bomber last week in Afghanistan.  It was another reminder of just how short this life is, as he leaves behind a wife and 2 children.  When I finished navigating barricades, I was standing in front of the American Girl flagship store which opens at 9am (surprise).

Yesterday my social media newsfeeds and emails were inundated with postings about how The American Girl Company had released a diabetes care kit for American Girl dolls.  So, for the first time in my life, I walked into an American Girl store (holy smokes, kid culture shock), and asked for the diabetes doll stuff.  Yep, they had it on display.  It includes:

Diabetes storage case, ID card, medical bracelet, glucose monitor and lancet device, glucose tab container, an insulin pump, an insulin pen, some stickers, adhesive disk, and a log book.

American Girl Diabetes Care Kit

American Girl Diabetes Care Kit

I did not cry in the store since I was still shocked I was there and have also never understood American Girl dolls.  These dolls weren’t around in my time (I was all about Barbie) but my sister had them.  I always thought they were focused on historical periods which confused the heck out of me because why would Kit from 1934 be hanging out with Samantha from 1904 and why would either of them have inline skates?  Made zero sense to me.

This morning, I learned that there are a TON of these dolls and the American History dolls are just one part.  Kids, well parents, get the dolls to look like the kid.  They have a whole resturant in the store where people go to have tea with their doll.  Kids have birthday parties and all bring their American girl dolls along… and NOW that kid with T1D, can have accessories (a whole kit) that gives their doll the very same devices they use to manage and thrive with T1D.  Yep, no tears until right this very second.  I never grew up with an insulin pump and blood glucose meters came later in my diabetes days (I = Barbie playing dinosaur) but I did play a heck of a lot of sports.  American Girl dolls have a zillion sport accessory options (A ZILLION) and NOW they have diabetes equipment options too. Amazing.  Truly Me!

American Girl TRULY ME

American Girl TRULY ME

I took  home deposit money and bought some American Girl Diabetes Care Kits and then I did what any grown woman would do after being a kid in a toy store… I called my Mom.  Although she was flabbergasted that this diabetes equipment exists for dolls, she was more surprised that for all these years, I’d thought American Girl dolls should have been called Time Traveler dolls.

I now have 6 American Girl Diabetes Kits to GIVE away and my Mom suggested I give them away right here.  So in the comments, please tell me why you would like the Care kit and my Mom will pick out the winners (and I’ll notify you via the comments section by 1/6/16 and I will pick-up the shipping.  Shipping outside of the US will take a bit longer though).

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I ask one thing in return though, that you pay it forward.

On the other side of Pain is Wisdom.  xo

And for more information on how this American Girls diabetes care kit happened check out this story from the LA Times.

AG IP

Again and Again (really)?

The great health insurance debacle continues.

I received a letter 2 days ago dated 12/16 (last day of open enrollment for coverage starting 1/1), that my health insurance application was rejected due to the form being “old”.  Yep.  I had questioned the insurance broker in reference to the date on the application and if there was a newer one (there was a discrepancy in one of the plan codes although not mine).  It’s a long story involving many emails and phone calls but I was assured by the broker that the MY plan name and number were the same so the application would still be processed.  Nope.  After cry-panicking, sending an angry email on Saturday night, followed by more crying, I had to pull myself together for a FaceTime call with one of my nephews.

My nephew started by asking me, “What’s happening?” so I scaled it back but explained that I was in a bit of a mess with health insurance and how crazy things were.  He repeated back to me “crazy”.  Indeed, crazy. I spoke of how the options I had were not even close to what I wanted and all were worse than my current coverage but now another wrench was thrown into the mix.  He said something I didn’t quite understand, mentioned Lightning McQueen and talked about things that are “great”.  I told him the situation is tricky and he kept saying “tricky” back to me.  He then said my name, followed by “Rocky run”, put his hands above his head and started running in circles.  Next he dropped to the floor and did his version of Rocky Balboa push-ups (looked more like an impression of a seal).  Did I mention my nephew is 2 years old?  And it made me laugh and then think.  I have the privilege from time to time to speak to people about the evolution of T1D care and technologies, about progress and research, and the most important part… advocacy, I have spoken about the JDRF Ride program and why it is so very dear to me. I get to talk and talk and even tie things into some of my own personal philosophies and parallels with Rocky Balboa.  Eye of the Tiger, baby.

Freedom Fog

Freedom fog all around

My nephew’s advice was solid.  This insurance mess is a mess for sure, but I need to keep fighting.  This was another round, not the full fight.  It’s like athletic training.  You keep going and when you hit obstacles, you use your mind and experience to figure out multiple solutions.

I moved on to Plan B yesterday when I’d exhausted everything I could do in this debacle (it was Sunday), I took advantage of this Miami-esque weather we’re having in the North East, put air in the Pinata bike tires, dressed in a costume of Spandex and started pedaling.  I worked on Plan E (I already had a rough outline of C and D before I reached the West Side.  There were so many tourists near the WTC memorial and most walking in the bike lane.  “ON YOUR RIGHT,” was unsuccessful with most people who were not speaking English and I may have sounded like the teacher from Peanuts, “Wha-waaa-whhhha-WAAAAHH” so I decided to take side streets back across the city.  What a gift.  I saw beautiful graffiti from some of my favorite street artists, cleared my head a bit, smiled.

Wonder woman

Pinata Bike on a mission

Mr Robot Pinata

Hello Mr Robot

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LOVE

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Wheatpaste girl

This morning I started my follow-up calls to my health insurance broker after a night of emails and networking my D plan.  My “kill them with kindness rule” had to be shelved for a bit.  Emails unanswered, voicemail messages unreturned, cell phone calls and texts done (repeatedly).  Couldn’t get my hands on a carrier pigeon (damn those birds are fast). I called the broker company’s main number and then kept dialing extensions of everyone else in that department.  Oops.  I’m sorry I dialed the wrong extension, I haven’t been able to get through, can you transfer me, I don’t mind waiting, thanks so much for your help.  I finished signing all the appropriate forms a few minutes later.  Will this situation resolve itself in enough time?  I don’t know.  Plan C is so close now I could lick it.

Patient advocacy starts with us.  Always.  Now stick your hands in the air and Rocky Run.

xo

From East to West

Yesterday, I was honored to have my JDRF Ride story featured in the monthly Ride newsletter.  Although there were many tears, frustrations and times of doubt along the way, I realize how fortunate I am to have had this incredible experience.

With all my heart, I thank you.
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A excerpt from the JDRF newsletter’s rider spotlight:

This year I proved that its’ not about the ride, it’s all about the journey. I started my first JDRF Ride in Burlington but actually finished on the other side of the country.

After years of involvement with the JDRF Walk program, I was ready for a new and different type of challenge, so in 2014, after some strong persuasion from one of the National Coaches, I agreed to do my first JDRF Ride in 2015. With my NYC teammates and coaches, I spent the entire spring training and fundraising for the end of July, planning to complete my first century ride.

Although a little scared, I felt ready for Burlington. Due to a perfect storm of T1D problems, my ride ended early in the day due to medical issues. I felt devastated but continued to cheer on my teammates and sister who were riding to eradicate the very problems I was having that day. That evening, at the celebratory dinner, I was completely shocked and honored to be awarded with the JDRF Spirit Jersey. I spoke of the “fight” with T1D. That day, diabetes had won THAT round, but that evening, I won.

Within days, a plan was hatched for me to take a second shot at a century ride this season. Thanks to social media, word spread about my Burlington experience and people continued to donate to my fundraising efforts. Once given the medical green light, I went back to ride training. It was challenging, as much of my training was kept a secret but I continued to focus on my goal to finish my ride at the last JDRF Ride of the season in Tucson, Arizona.

I flew into Tucson a little nervous and extremely excited. I met (and surprised) many of the people who’d been in touch, hoping I would accomplish my century goal during next year’s Ride season. There were many tears and so much love. At the Pre-Ride Dinner, I gave a presentation of Why We Ride, which allowed me to connect growing up and living with T1D, my experience in clinical trials, my Burlington experience and my Rocky Balboa-esque fight. Tucson was another step and another round for me in my journey to help cure T1D.

The ride itself was a challenge, including some early day insulin pump problems and making up for lost time, but I kept pedaling along with wonderful support from fellow riders and the JDRF Ride coaches. I DID IT! 104 miles. I went the distance and won another round. I am so grateful and humbled by all the efforts of so many amazing people who helped me reach both my fundraising and ride distance goals.

I have flourished and grown through the strength of the JDRF Ride community. I am eager to continue my development as a cyclist (a term I refused to call myself until I completed Tucson). I am encouraged, excited and certainly relieved.

To everyone from Burlington to Tucson, I thank you. This life is to be lived, fully. Thank you for enabling me to do just that!

Registration for the 2016 Ride season starts 1/20 and there is a NEW ride location!  Stay tuned for more information (this is BIG).

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