Category Archives: DOC

A Little Heart

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This week I’m mildly obsessed with the song “The Heart Wants What It Wants” by Selena Gomez (and don’t even get me started on that “Stars Dance” song.  Oh Selena where have you been all my life?  Oh wait, you weren’t born yet).  To anyone who knows me as a Motley Crue/Cinderella/Arcade Fire/TV on the Radio/Bjork fan, I’m sorry.  Yep, bubble burst.  So speaking of hearts, I LOVE Valentine’s Day.  A holiday created to sell cards?  HELL YES!  I love cards too!  I even love index cards.

Valentine’s Day is a fantastic IMG_0116reason/excuse to pay-it-forward.  There’s still time to Spare a Rose, Save a Child.

I don’t think of Valentine’s Day as a “romance” thing.  It’s about happiness, smiles, being kind (even when you really don’t want to be), doing someone else a favor, surprises, simply saying “I LOVE you”, and grilled cheese.  Why not right?  My only real Valentine’s Day disaster was when I decorated a coworker’s desk with hundreds of heart stickers.  Those stickers weren’t liartumblr_n9q6gjcaoJ1rk250ao1_1280s (so damn STICKY.  Tragic clean-up).  Well you win some, you lose some right?

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And if you need a little inspiration (and who doesn’t love a little magic a la scavenger hunt), please join me in finding some hearts.  Send’em my way (as you can see, February is looking a little skimpy): surfacefine@gmail.com

Do Good, Feel Good.  LOVE.  Oh and get some exercise.  Be good to your heart.

 

Insulin N’ Roses (I N’ R)

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I posted this earlier this morning on Facebook and was surprised to hear from 3 friends in a matter of minutes that they didn’t know this program existed.  One is a T1D friend I met through JDRF Los Angeles a few years ago and another is the Mom of a recently diagnosed T1D who I was introduced to through a business competitor (yes, the world is small).  I take for granted that there are people in the #DOC who do such an incredible job promoting the Spare a Rose, Save a Child campaign that a few tweets from me are enough.  The messages I received both publicly and privately to the FB post certainly prove otherwise.  So here you go (yep, Do Good, Feel Good) and spread the word

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In many parts of the world, a child diagnosed with T1D will die in a matter of days, due to a lack of available insulin. By sending one less rose this Valentine’s Day, you can provide a child with a month’s worth of insulin. For the second year in a row, my Mom will be receiving a Valentine’s card thanking her for being my Mom and notification that in lieu of a dozen roses, she has instead kept a child alive for another year.

Roses die, kids shouldn’t.  http://www.SpareARose.org/give

From www.spacegirlw.tumblr.com (took this over the weekend. Perfect for this post)

From www.spacegirlw.tumblr.com (took this over the weekend. Perfect for this post)

#SpareARose

THREE.

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Here’s the conclusion of the Artificial Pancreas Trial blog on the JDRF page.  As I have said before, these trials need volunteers and people to spread the word.  I was asked by a relative last night, if I got “the” pancreas.  She thought my participating in this trial was a pancreas replacement of some sort… like surgically.  People beyond the T1D community need information.  I ask you to please help me spread the word if you too want the AP to become a reality.   Get other people to like the JDRF Facebook page too.  Every once in a while, people get inspired by something they read, something that catches their eye, a conversation.  Let this be part of a continuing conversation.  Good conversation.  Keep it going beyond us in the T1D community.  Thanks.

FREE – NYC JDRF ONE Expo

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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

One-Expo-Flyer_v2

 

 

Baby Got Back (For 24 Hours)

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In an effort to give my tummy a break and a little healing time, I tried a “flank” pump site Monday morning.  Yep, my back.  I know people wear insulin pump sites there.  Its an approved spot on those pump site diagrams.  I have attempted this before without success.  Animas (Unimedical) blue 6mm cannula and I was ready to go.  It’s a little strange to rotate around to do the insertion BUT it’s a spring loaded site inserter and I suspect that makes it a hell-of-a-mucho more manageable.

*BAM*.  I was good to go and made sure to wear jeans yesterday that were far lower than the site spot.  I was aware that the site hurt.  It didn’t hurt like a tummy site that gets all crazy stabby immediately upon insertion and you just know you have to yank it out and then you’re either prepared for a geyser or your cursing at yourself because you have blood tie-dying your clothing AND you SHOULD have been prepared.  Nope, the flank was not that kind of pain.  Just irritating.

back site 2

 

Mind over matter?  I was busy all day but it hurt.  A bit stingy.  A bit itchy.  The insulin absorption from the site seemed off, but eventually worked (although slower than usual).  I went out to dinner and sat on a bench type seat (I happened to be on a boat which was lovely) so my back was never pressed against the back of a chair and I avoided that irritation completely.  Getting ready for bed, I kept thinking it felt stingy-itchy, but I needed to stick (pun intended) it out.

I woke up in the wee morning hours when I felt the Dexcom site pull off my thigh.  Seriously? I had IV3000’d the hell out of it right before my Gilligan’s Island dinner tour and the IV tape somehow dislodged from me in bed, got slightly stuck on the sheets and when I rolled to the side, I ripped that Dexcom site right out.  BG was in the 120s, so back to sleep.

Early gym morning.  Replaced Dexcom and slathered the new one with SkinTac.  Good to go.  Pulled on my gym pants and felt something move on my back.  Well those gym pants are tough.  So incredibly tough that they *flicked* the pump site right off me.  Put a new site on my tummy and was off to the gym.  My phantom back site still hurt.  Ouch.

back site re

So what’s the deal?  Am I really the only one who can’t get these flank sites to work?  The pant flicking was unfortunate BUT that site was still hurting and I don’t think I would have made it the full day with that stabby site.  Thank you gym pants.  Well done.  All sarcasm aside (there is no such thing, so some sarcasm aside), does anyone have a flank site recommendation?  I had previously tried the 9mm and thought the 6mm would be the solution.  Nope.  Does this need to be a two man operation and I just need to get further back on my back?  Should I be going to yoga to get better contortionist moves?  Do I just have it in the wrong spot?  Anyone?

Launch

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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).

mtsina1i

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

Dracula

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I snapped this pic yesterday while on the fly. I switched sites in the morning while packing-up some boxes and had about 30 seconds to myself. I left the old site in… Just in case.  Hours later the old site started to bug me (also note, my skinny jeans were feeling snug, I was moving around a lot and the old site was simply annoyed). I pulled it out and immediately saw the blood. Oops. And after putting a tissue in the waist of my pants, checked the cannula.

Eek!

Hello there vampire!

vampireJPG copy

I snapped a pic. I thought the pic looked kinda of cool (interesting angle, decent light).

Vampires really do exist!

 

New Rates And Some Other Stuff

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Endo appointment yesterday.  Didn’t have high hopes (high, ha) as I have been running way TOO high lately, especially overnight.  A1c is a higher than it has been in 3 years.  Disappointing but not surprising (up .3 BUT that takes me to the next whole number and that I seriously dislike).  Also gained a chunk of weight.  More than I thought, but not upsetting as I missed having a butt.  Baby Got Back can’t be my favorite song without some junk in the trunk right?

Adjusted some basal rates with my doctor as the last adjustments did zilch.

New basals worked way TOO well overnight. Ooof.  This morning’s headache plus allergies was like being b*tched slapped by my pump and then a bag of freshly cut grass… over and over again.

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Also, I found a whole bunch of hearts this morning. And TONS the last few days.  Timing. Found: hearts . I still have a lot to add.  I find myself walking routes where I know I will see hearts that I’ve already met.  If nothing else, it’s a good breathing exercise.  See a heart, take a HUGE deep breath.

According to FitBit, I’m averaging just shy of 40 miles a week.  How the H-E-double-hockey-sticks is that possible?!?  Amazing.  That’s all walking!  Cray.

There appears to be another shot (shots, ha) at my getting into an artificial pancreas trial.  I don’t want to think too much about it and set myself up for disappointment but the idea of this old body being used for diabetes progress is deliriously exciting.  Stop thinking about it.  Easier to say than do.

My 35th diaversary is approaching next month.  My feelings on this are a tangled web.  I should write about that, as maybe I’m not the only one?  35 years of this fear and giving myself incessant mental pep talks is a really long time.

In other news, my eye is FINALLY healing (and an allergy puff ball).

eyeheal

This past Saturday, I said goodbye to two of the very biggest Alecia’s Stem Cells supporters.  They were with me from the very beginning of founding ASC.  Saturday would have been their 60th wedding anniversary.  Now they are back together.  Also, being on a moving dock with ashes is a possible recipe for disaster.  Life is short.  Never lose sight of the wonderful experiences you’ve had along the way.  The people who believe in you… hug them, love them, appreciate them.  Sappy-McSappster moment.

GBK

A few other random thoughts and observations:  50 Cent should stick to rap, I need to try pump sites in my lower back, Maya Angelou was one hell of a woman, and I may have seen Apollo Creed at a train station in Jersey on memorial day.

apollo

 

 

 

 

 

 

 

Be good. ONE Walk

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little curl

How did I possibly breathe out of that nose?

 

 

There was a little girl
Who had a little curl
Right in the middle of her forehead.
And when she was good
She was very, very good
But when she was bad
She was horrid!

 

 

Let’s be good.  Let’s feel good.  Let’s do good.

It’s official.  Alecia’s Stem Cells NYC JDRF Walk Team is registered to walk again.

I want you.

I need you.

We need advocacy.

We need to push technology forward.

We need to a CURE.

Come walk with me.

Come support our team.

Spread the word.

Reach out.

What are you doing September 28th?  NYC.  Brooklyn.  A beautiful bridge.  13th Anniversary of the founding Alecia’s Stem Cells.  15th ASC Walk.  25th Anniversary of the JDRF Manhattan Walk.  My 35th year with a busted-up pancreas.  35…. WOW.

Type ONE, until NONE.

ONE WALK.

I need your help.

I.  NEED.  YOU.

For more info, come visit Alecia’s Stem Cells.  xo

 

Australia?

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ASC 2013

Alecia’s Stem Cells- JDRF- 2013

 

WE’RE GOING TO AUSTRALIA!

 

Well actually the Alecia’s Stem Cells 2013 Shirt graphic is. Remember our award winning ASC 2013 JDRF NYC Shirts?

“New Technologies, New Treatments, New York”… ?

 

ASC JAJ

JDRF Australia contacted me for their New York, New York themed Gala (well, Galas!). They LOVED our shirts (hey we loved our shirts too), so presto, I sent over the graphics.  They have a printer who printed the shirts for free (yay) and I just got word they have printed shirts for all their volunteers to wear at the Australian Galas… So in a way, ASC will be at 4 Galas this May…Melbourne, Sydney, Perth & Brisbane.  Amazing!

This perfectly ties in with my last 2 Volunteering themed posts too!  More amazing!

Do good, feel good.

Me and my parents

Me and my parents

JDRF 2013 Walk