The First Time

I have another post over at A Sweet Life today.  I wish I’d done a better job editing but it was a bit (totally and completely) rushed.  I am still in the Artificial Pancreas clinical trial and there continues to be lots more information to share.  The more people who know about this program, the better.  The more people willing to participate, the better.  And the more people who get involved in fundraising for crucial research, the better.  My experience is proof of a JDRF grant at work and testament to the incredible and honorable dedication of teams at both Mt. Sinai New York City and the University of Virginia.

2 other things:

1.  This is my DiAs screen from last night.  The loop is CLOSED in this photo and I am supposed to be asleep (and a cool view of the Empire State Building):

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2.  I was briefly reunited with my dog today.  He smells less than superb and I don’t care:

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2 Items of Importance – I Don’t Mess Around

I, along with 4 other people affected by T1D from the JDRF NYC chapter, met with representatives from Senator Chuck Schumer’s office 2 weeks ago (yes I did almost autocorrect his name to “Chick Schumer” recently, caught it in time, and then laughed so had alone in an elevator that i partially slid down the wall).  We were there to discuss S. 2689 (Medicare coverage of Continuous Glucose Monitors).  I left hopeful and with finger’s crossed.

On Thursday night while in route to Artificial Pancreas stuff (Wow, yes, wow), I received an email that Senator Schumer will co-sponsor the bill.  We need this to happen folks.  Many people (and I’m sorry to say fellow T1Ds) don’t see how important this is.  Let me reiterate why this is important to support this and help fight, even if you are nowhere near 65 years old and think this doesn’t affect you.

1. If you support the Artificial Pancreas Program, a CGM is an integral part of this program.  Let me spell it out:  to Close he Loop, you need a CGM.  If Medicare does not support and cover CGMs, whatever the device is that becomes the Artificial Pancreas will have THAT much tougher of a time to get in OUR hands.  CGM coverage by Medicare is a hurdle we can knock out of the way to get us closer to the availability of the Artificial Pancreas.

2. Health insurance companies look to Medicare.  If Medicare does NOT cover CGMs, it makes CGMs “appear” unnecessary.  My CGM is a savior to me.  If yours a savior to you? A savior to someone you love?  A savior to someone you mildly like?  Then go HERE and support THIS.

Now here is the BIG part… TALK this up!  Post it on Twitter, FaceBook, Instagram and whatever other social Media things people use these days.  Reach out to people BEYOND the diabetes community!   REACH OUT.

Did you go to High School?  Reach out to your High school alumni.  Do you have siblings?  Get them to sign.  Friend of friends?  Yeah, grab them too.  This doesn’t cost money.  it just takes a few minutes.

GO!

Next up… Artificial Pancreas stuff.  The photo is pretty ridiculous (why are we in a magnifying glass?  Well it’s appropriate that I’m laughing, no?) but here’s the skinny from Brian and me over at JDRF’s Type One Nation.

Thanks for reading.  Spread the word.

 

 

 

 

OnetoNone

Alecia’s Stem Cells JDRF ONE WALK team is selling shirts again!  New spin!  These awesome shirts are NOT the shirts our walk team will be wearing this year.  This design comes in a slew of styles and sizes…. mens, womens, kiddos.

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Here was the idea…. design a shirt for sale to the public and the proceeds will go to JDRF.  CHECK.

Design a shirt that is a conversation starter…. One arrow none?  Oh what does that mean?

Design a shirt that anyone and everyone would wear.

Design a shirt that embraces both JDRF and Alecia’s Stem Cells…. yep, done.

Use red!  Red is the color of energy, blood, desire and PASSION!  WE have the PASSION to PUSH Type ONE to Type NONE!

Want a shirt?  OnetoNone

Care to help?  Share this link: http://inktothepeople.com/marketplace/ink-detail/38593

And a HUGE thank you to Ink to the People who are so supportive of me, ASC, and fighting T1D!

Happy Labor Day weekend! xo

FREE – NYC JDRF ONE Expo

There is quite a roster for the JDRF NYC ONE Expo on 9/16.

ONE event to get Educated, Engaged, and Empowered!

I will be speaking during the Research Update along with Marlon Pragnell,  JDRF’s Senior Scientific Program Manager, who will be discussing the advances in JDRF’s priority T1D therapies, including encapsulation, prevention and a detailed look on the Artificial Pancreas Project and Dr Carol Levy, Director of Type 1 Diabetes and Diabetes in Pregnancy at Mt Sinai Hospital who will be presenting about Artificial Pancreas research being conducted at Mount Sinai Hospital in NYC.

I know space is limited for the presentations, so here’s the registration link AND it’s FREE (more info if you follow link than the image below): ONE EXPO

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Wordless Wednesday – Riders On The Storm

The story to go with this post is just outrageous, bizarre and absurd, but it’s Wordless (and way stressful) Wednesday.

I think maybe the smile is enough to convey my thoughts (and wet hair blown across face /stuck to my cheek apparently).

20 miles.

Adventure.

Check!

Also, Dexcom in shirt.  Can I be like Sponge Bob Square Pants, but instead Square Boob?

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Launch

I have to make this short and sweet as I need to get my butt to the gym since this bike riding thing is legitimately happening on Saturday and I even have the bike shirt in my purse at the moment which seems odd (read: scary).

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Last night I was asked to speak about my “feelings on being involved” in the Artificial Pancreas Project at the Official launch of the APP clinical trials at Mt. Sinai hospital.  It was an amazing experience, listening to the presentation and success of the UVA APP trials.  I said this elsewhere on social media last night, but it bears repeating, I believe my experience last night was a pivotal life moment, where all I felt was inspired and determined.

And that could be the end of this post, but there was something much bigger going on for me.  The BEST part was that my Mom, one of my brothers and my sister were all there and shared the experience with me. Yeah, THAT was the best part.

#HOPE

I Love You More

There is so much D stuff going on around here that I crashed yesterday and …

TOOK a NAP (I am NOT a napper).  While my brain tries to process and absorb the past few days, I have some pics I just can’t wait to share.

I (oddly, nervously) HELD the encapsulation project from ViaCyte.

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My friend Cindy took this pic.  She is a lovely and a really funny D-Mom and we tend to make each other cry.  You know what she’s not?  A photographer!  Hello Blurry pic.

Next up: #JDRFOneWalk Conference in Washington, DC was wonderful.  HOPE is so beautifully motivating.  Facial tattoos while on a 20 minute walk by oneself in this nation’s capital, lends to some pretty confusing conversations (I kept forgetting I had it on my face… most of the confusion involved the World Cup).

Mike Tyson without the ear biting.

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My bike riding has taken on a new angle.  Details later, but I’m riding a 3-speed Citibike or a stationary bike at the gym, but more.  My joking is no longer a joke.  I’m training-ish.  I ring the Citibike bell like nobody’s business BUT mostly when no one’s on the path.  Yes, I’m a 10 years old.  Want to join the Manhattan/Brooklyn JDRF One Walk?  That’s the bridge in the background of my bike training pic.  Gorgeous right?

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And finally, I had an incredibly magical moment on Saturday.

Exhausted and pedaling along when I saw a BIG heart!

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Yes, that is a piano that appears to have washed ashore on the tiny bank of the East River.  I hit the breaks and wondered just how tired and dehydrated I could possibly be.

These pics are my proof that I did indeed see a piano in the sand, tagged with A HEART.

Magic, I’m telling you, magic.

More to come. xo

 

 

Curiosity?

Foot is healing and Dexcom site is switched.

Left thigh doesn’t hurt at all but I am curious as to why the blood pooled around the edge of the sensor (yep, that’s a skort in the pic…  I like to rock a skort regardless of the teasing I seembikeshorts to keep catch about it) .  Anyone?  I don’t know why I’m so curious about this, but after all the blood upon insertion, I expected a big bloody bruise under the sensor, not around it…. Anyone?

 

So what’s next?  In a dramatic moment (read: insane), my sister and I signed up for  JDRF Ride.  No, not one of the BIG Rides, but a local one…. well Jamaica….ummmmm Jamaica, Queens… which seems far away (right now) since I still haven’t figured out how we are getting there.  You know what else I haven’t figured out?  Bikes!  We don’t have bikes!  We *may* have a connection to borrowing bikes thanks to JDRF.  Great!  There is a 10 mile version to which I said, “pish-posh”.  I regret my pish-posh attitude now.   I will be riding 20 miles.  I had no idea how far that was.  My training so far has been 2 Citibike rides.

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That is the Brooklyn Bridge in the background, which is part of the route of NYC’s JDRF One Walk.  This is also the view over my Citibike handlebars and my big huge purse strapped to the front.  My training looks wimpy.  My training IS wimpy.

After eating way too much unhealthy food over the 4th, yesterday I went to the gym.  Granted I have some sort of upper respiratory thing I’m fighting through, BUT I did a 1/2 hour on the elliptical and then switched to a stationary bike.  I was good and sweaty and coughing and figured maybe I rode 10 miles.  I looked down.  Nope.  2.16 miles.  Holy Smokes this going to be ugly.  How many spin classes can I go to in 3 weeks?  Eek.  Remember when I did that CYC (spinning madness) class for JDRF?  My sister and friend loved it so much that they still take the classes!  I hope my sister doesn’t mind me riding on the handlebars of her bike.

Here’s the route (terrifying YET exhilarating and then a little “OMG” and then “those stops look fantastic”):

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Next up: I leave Wednesday for Washington DC for the JDRF One Walk Conference: Road to Success.  I’m excited and super curious.

And finally, in the next few weeks I hope to have some updates on the AP trials which are to begin HERE in NYC.  Not holding my breath for my own guinea pig involvement and not getting over enthusiastic (so I keep telling myself).

Keep advocating folks.

 

 

 

 

 

 

 

 

 

Wordless Wednesday – PROGRESS!!!

I can’t even describe how inspired I feel today (I’ve been up since 4:30am so it may partially be exhaustion, but I do feel excited).  While my brain and my heart settle a bit… here’s a pic of me last night (microphone not working and video without sound).  I definitely think I was a bit stiff and far away, my chit-chat was the most boring part of the evening, but who cares…. BECAUSE…..

Not a bad pic.  Pretty sure this is when I realized there was no video playing!

Not a bad pic. Pretty sure this is when I realized there was no video playing!

 

THIS IS WHAT IT’S ALL ABOUT!

Dr Aaron Kowalski

Dr Aaron Kowalski

Dr. Aaron Kowalski.

MIND.

BLOWN.  

I got to sit next to him and afterward, bombard him with questions.  If my pancreas could smile, believe me, it would have.

Pancreas from I Heart Guts

Pancreas from I Heart Guts

 

 

 

 

More information on all of this later!  And here’s some additional info about Dr. Kowalski:

Dr. Kowalski, JDRF’s Vice President, Artificial Pancreas Project.  He is an internationally recognized expert in the area of diabetes technologies, and oversees JDRF-funded research aimed at accelerating the delivery and development of the artificial pancreas systems. He has authored numerous articles in the field, including co-authoring the landmark study in The New England Journal of Medicine that revealed the effectiveness of continuous glucose monitors in T1D.

Dr. Kowalski’s brother Stephen was diagnosed with type 1 in 1977 diabetes and in 1984, Dr. Kowalski was diagnosed with type 1 diabetes.