Bye Phife – A Funky Diabetic

“Now here’s a funky introduction of how nice I am.

Tell your mother, tell your father, send a telegram.

I’m like an energizer cause, you see, I last long.

My crew is never ever whack because we stand strong.”

 

Five years ago I attended a screening of Michael Rapaport’s documentary “Beats, Rhymes & Life: The Travels of A Tribe Called Quest”. Tribe had been one of my absolute favorite Hip Hop bands (still is).  I went to a TCQ show shortly after college when I moved to New York City.  Busta Rhymes made a guest appearance and I remember fondly how everyone went bananas-cuckoo-crazy when he jumped on stage.  It was at THAT very show where A Tribe Called Quest announced that they were breaking-up.  It was shocking.

Years later I learned Michael Rapaport (actor/director) was at the very same NYC show in 1998.  He was so fascinated by the break-up and was a super fan, that he decided to make a documentary or “rapumentary” about the group’s rise to fame and subsequent feuding and break-up.  I made it my mission to go to the opening screening of the movie at the Tribeca Film Festival.  I knew Phife Dawg (member of TCQ) was diabetic, person-with-diabetes, and had undergone a kidney transplant.  i was quite curious to see how he was doing.

What I didn’t know, and was surprised to find while viewing the movie, was the significant role diabetes played in the break-up and conflicts within the band.  Diagnosed in 1990, Phife made it clear in both the movie and in the Q&A with the audience, that he struggled with his diabetes diagnosis.  Phife had problems with hypoglycemia and hyperglycemia as the fame of the band grew.  He also addressed how fluctuations in glucose levels led to moodiness which also led to conflicts with his bandmates.  I sat in the theater next to my college roommate, as Phife spoke, we both cried.

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Can I kick it?

Yes you can!

This morning, I read that Phife passed away.  I just saw a release from his family that he passed from complications of diabetes.  One of my brothers contacted me about whether Phife was T1D or T2D.  Over the years, I have seen reports of both.  All I know, is when I hear of a loss of life from diabetes, I am flooded with feelings and then ideas. Today, I think of my many happy memories listening to and seeing a Tribe Called Quest while in college, when I was a brand new New Yorker, and at a film screening.  I think of the massive influence TCQ had on so many of today’s musicians.  I think of all the times I giggled listening to the incredibly creative lyrics of Tribe songs.

“When’s the last time you heard a funky diabetic?”

Mayor

Art and Helicopters

I was 13 minutes late for plans last evening (I just need a helicopter.  I live a few blocks from a helipad.  I would also like Inspector Gadget spring bounce shoes.  I would not use both at the same time though, jump out of the helicopter, turn on spring shoes, bounce back too far and be decapitated by helicopter blades. No bueno.)

13 minutes late and as I tripped, but did not fall, in the street I looked up and saw this:

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I haven’t seen a Appleton Pictures piece in a while, and my heart skipped a beat.

A fun evening and as I headed home, lo (I was not low at the time) and behold:

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Like a diabetes Batman symbol.

#diabetesawareness

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