Tag Archives: JDRF

OnetoNone

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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

Cha-Ching MF!

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Last week I took the Curse jar to the bank.  The jar itself is stupidly heavy (I did not buy the jar nor write the label) which led me to believe there would be more dinero in there than there actually was…BUT, Office Cuss Jar donated $43.55 to our Alecia’s Stem Cells Walk Team!  F yeah!

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And on that note, THIS is my current favorite (and yes I just put a quarter in for posting this…. seemed like the right thing to do).

MF

 

Wordless Wednesday – Riders On The Storm

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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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What’s New (The Preview)

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A few items:

1.  Recently someone told me how they find it easier to manage diabetes without working out.  Exercise makes their BGs bounce around.  I agree with the bouncing.  I get it.  Where I disagree though (and I can only speak for myself), is exercise makes your body and mind stronger.  Exercise keeps your blood pumping and I LOVE, love, LOVE that I have a strong pulse in my extremities.  Exercise is a good stress reliever (even if I stress about my blood glucose levels while I exercise).  And the most important part for me (currently), is there are days when I feel like I have zero control in oh so very many areas of my life (sometimes read: ALL AREAS).  Exercise is O N E area where I have some say… making the time, making exercise goals, achieving a goal.  My “mantra” (thanks Stacey for reminding me) is Do Good, Feel Good.  I think when it comes to exercise, this applies to one’s own body too:

Do Good For Yourself, Feel Good About Yourself.

Now when it comes to the BG bouncing, I get it.  Saturday is my JDRF Jamaica, Queens bike ride.  I believe I am getting a loaner bike.  Yep, 20 miles in an area I have never been on a loaner bike (I hope it’s not a beach cruiser… I’ve heard they are not ideal… ha).  Tonight I rode again at the gym.  I played around with the screen and ended up with some sort of video of a path in a Northern “pocket” of California (pocket was their video screen word, not mine).  The video kept changing.  It may have made me nauseous.  I believe the videos are for running because the path turned to sand on the beach right up against crashing waves.  Biking in the sand?  That “may” be out of my reach.  Then I became the smirking girl on the bike.  Could be worse.  I am far from riding in the woods on paths of roots and dirt as learned when I wanted to hit the breaks before the log going across a creek… yikes.

The photos below are what happens when you take pics from a moving vehicle…. oh, wait, I was on stationary bike.  You are viewing paths (and a log I had to dodge) and a Dexcom screen.  What you can barely see is the Dexcom down angle arrow and a BG of 128.

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I had reduced my basal by 40% for 30 minutes which started 10 minutes pre-workout.  I thought it was a HUGE success when I finally stopped dropping at 82 YAY!

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I made dinner, and after bolusing and eating, I started dropping again.  Bummer.  And then treating a low after I JUST had eaten was less than ideal, BUT every workout isn’t like this and hopefully Saturday will be a smoother ride.  Get it?  Ride?  Bikes?

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2.  I love seeing and hearing so much publicity around Miss Idaho.  Rock on Sierra and #showmeyourpump  Out of all the mainstream press I’ve seen though, this article from Bustle is my fave (EXCEPT the part that describes an insulin pump as “an aid that controls her diabetes”… oh how I wish that was true…. but more on THAT on THURSDAY).  Would “Helps” Control, make it better?

3.  I’ve gotten a lot of information about this whole putting your Dexcom on the Cloud stuff (cool pics ).  I haven’t looked much into it for 2 reasons: 1. Time is a little tight right now and 2. There is no one in my life who would want/need/be aided by seeing my Dexcom readings in real time.  I will say though, I can see how this is immensely helpful to parents of T1D kiddos and like Kerri said, her husband and Mom can check on her when she or they are away.  At some point, I will look into this further (although I suspect/expect this to be COMPLETELY over my head since I can’t even delete emails off an iPhone… they just keep coming back).  Having my Dexcom readings on my wrist or phone would be cool.  There is a fascinating Facebook group for this technology CGM in the Cloud . Cool right?

4.  I caught this earlier tonight (post bike ride lows).  Dating and Diabetes.  I have spent a solid year avoiding this topic.  I feel my stories could be discouraging and I want to encourage, not discourage… and then I feel incredibly torn on the entire topic, my feelings and my experiences.  Sigh.  Briley at InDpendence tackled it a bit tonight.  I truly applaud her bravery.

5.  I had a #5 item but for the life of me, I can’t remember what it was #OldAndTired

 

 

 

 

I Love You More

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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?

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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.

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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!!!

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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

 

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!