Diabetes Blog Week – LOVE

I started this blog/space, to connect and share within the diabetes community.  The switch from thinking about writing a blog to actually doing it (years ago), came from a prompt I read from Karen Graffeo at Bitter Sweet about participating in Diabetes Blog Week.  I don’t write many posts on this blog recently and I don’t spend as much time within the DOC as I once did, but that doesn’t delineate how much I value this sense of community, the connections I’ve made, and that this blog led me to expand my own role as an advocate.  The connections I have made with others has become a vital part of my own wellbeing both physically and mentally.  I have gathered knowledge and most importantly, I have made amazing friends through the diabetes online community (DOC) that are now part of my In Real Life (IRL) world and that is priceless to me.

Today is the first day of this year’s Blog Week and here is the topic:

Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? (Thank you, Heather Gabel, for this topic suggestion.)

I do not like the photo below.  My arm looks the diameter of my thigh (it is not, yet), the wrinkles in my face seem accentuated, and there appears to be a baby’s foot growing out of my wrist. I do not like this photo, but I do LOVE this photo.  This is friendship, admiration and joy.

karen and alecia hug

This is my friend Karen.  Karen was on my radar years ago because I read her comments in DOC twitter chats and I also read her blog.  She’s a fellow T1D, lives in the same city that I do and when I was trying to learn about T1D and pregnancy, she was someone who I knew had experience.

We met in real life through JDRF at a group event. Participants included DOC-ers from 3 JDRF chapters who decided to get together for dinner beforehand.  Karen freaked out during our initial conversation. She knew of me through the JDRF NYC Walk (walk team).  I freaked out too (just far less visibly and audibly) when I realized this was the woman whose blog I’d been reading and following around the internet.

We became friends.  My friendship with Karen came with “accessories”… her husband and now 2 kids (please note: “accessories” is sarcasm folks.  Her husband gave me a pep talk one time that I will always carry in my heart). They are all my friends and I love them dearly.  Diabetes brought us together, specifically the DOC, and as much as I hate diabetes, I love my friend.  LOVE.

We may talk about things far beyond diabetes, we may laugh so hard we can’t speak to each other, and my life is richer because this family is in it, but I am aware that I would probably not know them if it weren’t for diabetes, so why am I here… today, rushing to type this post?  After an incredibly frustrating and annoying high BG and a messy pump site change in my office’s bathroom, Karen popped into my mind and that we need to make plans soon.  I text her a much shorter version of what I wrote above and explained that as frustrated as I may be, that diabetes sucks and she doesn’t (that’s always a nice text message, “you don’t suck”).  Diabetes gave me my friend.  My hope being here today as part of Blog Week, is that it’s a reminder of just how vital and wonderful these DOC friendships are and all it takes is ONE connection (I have many in my squad so please, no one be offended because these friendships are my wellness team).

A few weeks ago I went on a bike ride, I text Karen who happened to be right near my destination and subsequently had a cheer squad yelling my name (imagine Smurf voices) as the kiddos ran to my bike.  It was just awesome and although I did some more formal diabetes advocacy this morning, my buddies are what I celebrate in this blog post today.

HOffmanderson cheer squad

 

 

 

Monkeys at the Beach

“You cannot get through a single day without having an impact on the world around you. What you do makes a difference, and you have to decide what kind of difference you want to make.”

—Jane Goodall (born 1934)
Primatologist, Ethologist, Anthropologist, Un Messenger Of Peace

bike nake

I’m riding a bike again (striped down… the bike, not me…yet), raising funds and building diabetes awareness as are a WHOLE team of other wonderful, amazing and inspiring people… and we’ll be riding at Amelia Island, Florida! 100 Miles.  Woot.

http://www2.jdrf.org/goto/alecia

Blinded Me With Science

 

IMG_9580Thomas Dolby wrote and sang a song called “She Blinded Me With Science” which was released in 1982.  I have always liked the song and am currently waiting at The Joslin Diabetes Center donating all sorts of parts of myself (a lot of blood in the photo above and DNA stuff) and having all sorts of tests for a clinical trial.  I am now waiting for the 2.5 hour eye exam (actually waiting for my eyes to dilate) and the Thomas Dolby’s hit is totally stuck in my head (ear worm) and making me smile like a lunatic banging away on my laptop.

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Little known facts about the song (Thanks Wikipedia):

The song features interjections from the British scientist and TV presenter Magnus Pyke who repeatedly shouts “Science!” (thanks Google).  Thomas Dolby wrote the song because he had an idea for a music video and needed a song to go along with it.  There are a lot of interesting parallels here today.

One of the first lasers to treat diabetic retinopathy

One of the first lasers to treat diabetic retinopathy

The lyrics:

It’s poetry in motion
She turned her tender eyes to me
As deep as any ocean
As sweet as any harmony
Mmm – but she blinded me with science
She blinded me with science
And failed me in biology

When I’m dancing close to her
Blinding me with science – science
I can smell the chemicals
Science
Science

Mmm – but it’s poetry in motion
And when she turned her eyes to me
As deep as any ocean
As sweet as any harmony
Mmm – but she blinded me with science
She blinded me with science
And failed me in geometry

When she’s dancing next to me
Blinding me with science – science
Science
I can hear machinery
‘Blinding me with science – science
Science

It’s poetry in motion
And now she’s making love to me
The spheres are in commotion
The elements in harmony
She blinded me with science
She blinded me with science
And hit me with technology

‘Good heavens Miss Sakamoto – you’re beautiful
I don’t believe it
There she goes again
She’s tidied up and I can’t find anything
All my tubes and wires
And careful notes
And antiquated notions

But – it’s poetry in motion
And when she turned her tender eyes to me
As deep as any ocean
As sweet as any harmony
Mmm – but she blinded me with science
She blinded me with science
And failed me in geometry

She blinded me – with science
She blinded me with

For more information on clinical trials in the US I encourage you to visit www.clincaltrials.gov

Lab Mouse Center

Lab Mouse Center

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:

insulin train

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:

appleton chelsea

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