Category Archives: advocacy

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

Curiosity?

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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.

MZwallace1

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”):

route-295x300

 

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!!!

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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.

 

Wimpiss Breath?

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Tonight is the official kick-off for the NYC (Manhattan’s) ONE Walk which is the roll out of a whole new platform for JDRF’s Walk (the evening is called Progress to Type None).  The purpose of the event is to discuss research developments over the past year (artificial pancreas, complications, encapsulation, smart insulin, restoration, and prevention), upcoming Team Walk plans, and the new website for the walk this year (thank God)… AND guess who the opening speaker is… ME.  Guess who I get to introduce? Jeffrey Brewer (I just found this out 15 minutes ago… yikes).

Today seems like a GREAT day to shake-off all this fear stuff that has really been nagging me since my 35th diaversary last week (check out the comments section of that post… yay DOC).  Let’s face it though… I’m not going to simply shake it off (although I really LOVED Scott’s comment “Yes, thirty five years is a long time – but it’s just a series of individual days, and so far you’ve survived every single one of them. There will be many more, and I’m sure you’ll survive those too.”)  So awesome. 

So, what’s my plan, you say?

Redirecting scared energy.  Granted this is an experiment… but, I think this could work (read: OMG this better work).  I have a lot more to read at this event than I thought and I haven’t actually seen the powerpoint that I will speaking along to (terrible sentence structure by the way… ending with a preposition.  “Along to”… cringe worthy).

But here’s the really great part… I get to speak a tiny bit about Alecia’s Stem Cells and with that, I will absolutely talk about the goals of this team.  That puts me in fighter mode.  That takes me out of worry mode.  I really need to get back to outlining that part though (geez where is this day going?).

Also on a slightly humorous side note: in my introduction tonight I am supposed to state that I am our Walk’s Corporate Team CHAMPION.  When I was a kid, my brothers and I would wrestle (although this story applies to most games we played).  When someone won, they SANG (often while flexing their muscles), “I am the CHAMPION, YOU ARE THE WIMPISS BREATH”, over and over (there was a tune involved, I promise).  I still don’t even know that wimpiss breath means but it had something to do with being a wimp and it sort of sounded bad.  It is damn near impossible to think of saying that line tonight, CHAMPION,  and not flexing like a professional wrestler from the 80s and then raising my arms up and hopping up and down like Rocky (I may just do the flexing anyway).

Tonight I get to embrace my fear of public speaking yet again.

I WILL redirect my fear.

I am forced to be brave.

When you’re SCARED but you still do it anyway, that’s BRAVE. -Neil Gaimon

 

Punching Vampires?

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I am distracted at work today.  I’ve had yucky, sticky blood sugars for almost 3 days now.  Mostly 200s that won’t budge (well there was a brief break on Saturday afternoon) unless they go up to the 300s and at one LONG point on the commute yesterday, a lovely HIGH reading.  UGH.  I have temporary basaled like crazy, way over-bolused out of frustration without any success, and attempted to flood myself with liquids.  2 insulin vial changes and 5 (yeah that’s right 5) site changes. 1 site hurt, 1 was so much worse than hurting… more like stabbing, but ALL 5 bled when I pulled them.  I did a site change at the office this morning only to realize I had used up my desk stash of reservoirs.  I couldn’t run home at the time, so I gave myself an injection.  When was the last time I used a syringe?  No clue, but it looked surprisingly tiny to me.  As I went to inject myself, my hand started to shake as I got the needle just shy of my skin.  My first thought, we’re having an earthquake.  Nope.  Tried again.  Same thing.  Still not an earthquake.  3rd try, I got it.  30 minutes later, I left for more pump supplies and to finish the site change.  I’ve been using the 6 mm Insets for the past few months and switched to one 9mm once today to no avail.  I have (temporarily) fixed quite a few electronics by hitting them against a table when nothing else seemed to work (have you met my TV remote control?).  So here’s my thinking…I would like to punch myself in the pancreas and see if that helps… you know, like a jump start.  Even if it were just temporary, I could use a break from this today.  It’s upsetting and scary.  This current pump site doesn’t hurt.  I don’t want to get too relieved just yet as It’s too early to tell if it’s working (fingers crossed)  Seriously though?  5 vampire cannulas?  5 in a row?  REALLY?

DEX high

So what’s the positive spin?  I certainly appreciate ALL the times that things like this DO NOT happen.  I appreciate all the times I forget I’m on a pump because it isn’t vampire bloody hell hurting me.  I appreciate that my mouth doesn’t normally taste like I’m sucking on pennies (gag).  I appreciate that people donate their time and money to diabetes research.  I appreciate that diet ginger ale is sold within my office building.  I appreciate that aside from all this diabetes madness I did have a nice weekend.  I also appreciate that I discovered Jumping Beans are a really thing (I had no idea).

If anyone wants to help me with this punch-my-pancreas-reset-experiment, just let me know.  I may however be busy be doing another site change.  Grrrrr.

 

Lordy Lordy…

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Look who’s 40!?!

Today is my dear friend Sara’s 40th Diaversary!

Sara is an incredible woman, an amazing friend, a true advocate, and has spread a wealth of Diabetes information to so many.  She has also been a guest blogger here, at Surfacefine sharing her experience with The JDRF Voices Council AND her Research Retreat.

Cheering you on Sara!  xoxoxo

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

An Addition

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Did you read the OUCH post?  Did you know its National Volunteer MONTH (not just week)?

  • It does sadden me a bit to hear JDRF LA is looking for volunteers to help at their Gala (I would think they would inundated with volunteers but then again, I am a dreamer) . I’ve worked at this event twice but won’t be in town for this year’s event.  Trust me, its definitely a do good, feel good experience, highly inspirational plus lots of celebrity sightings and cute puppies (who doesn’t like cute puppies?).  Info: Calling all volunteers!! We need your help at the Imagine Gala on May 3rd. For more information on times, location and roles click the following link. Send your completed form by email to spietrzak@jdrf.org or fax to 213-622-6276
  • Sara over at Moments of Wonderful is the Las Vegas JDRF Chapter’s Volunteer Manager and they also happen to be looking for volunteers!  You can contact her at: jdrfnvvolunteer@gmail.com
  • The Diabetes Scholars Foundation has a whole list of scholarships available to incoming freshman to a four year accredited college, university, technical or trade school.  Look at these scholarships and its only one application to apply to a multitude of scholarships!  Check this OUT!

OUCH!

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I have a pretty high tolerance for pain (that doesn’t mean I won’t complain incessantly when something hurts). I’ve been taking shots a long time (and they were WAY bigger when i was a kid), inserting pump sites and Dexcom sensors for oodles of years. Why then, is today the day that my left ring finger tip hurts so effing much from a finger stick? It’s almost comical in the realm of physical pain that typing is killing my damn finger and I keep wincing in pain… like a VERY angry splinter.

ouchJPG
Such a teeny red spot/ bruise. Sometimes it really is the little things that sting the most.

A bruised finger has me thinking about how ready I am for the next level of technology and ultimately, someday, I hope, a cure.  I think about how I speed packed this morning to get out of town for a few days.  Picking out what to wear today not based on weather or comfort, but what will keep my pump most accessible going through security at the airport and how I should have moisturized my legs as I may have to drop my pants to show of my thigh Dexcom site but at least I’m wearing my lucky heart undies.

I write this post to bring up a point near and dear to my heart (oh and to complain a bit)… This week has been National Volunteer Week (tomorrow is the last OFFICIAL day).

GO. DO. SOMETHING.

No really, go. Volunteer to help JDRF. Local chapters are always looking for people to help out. It’s not about donating/raising money (although that is indeed important). Encourage a non D to volunteer with you.  Believe me, it’s not always easy, but try it.  Spread the word.  Do good, feel good.  Figure out your talents and volunteer them. Give your time, your ideas, your heart and most importantly, your passion.

It is time. GO!

PS If you are looking for something to do…Alecia’s Stem Cells is ALWAYS looking for walkers, sponsors, social media pushers, friends, competitors, cheerleaders, huggers…. more info about ASC in the next few weeks.