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

Writing On The Wall?

The timing of this discovery, yet again, magic.

Believe in magic.

A moment where the writing really was on the wall!

FullSizeRender-4

Also if you get down on the ground surrounded by bags of garbage to take a photo, be glad you did not encounter rats.

Stop thinking about it.  No Whammies.  xo

 

A Little Heart

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?

IMG_0100

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.

 

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.

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.

 

 

 

 

 

 

 

 

 

Australia?

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

JDRF Meet-up & Tandem

Last night the JDRF Metros group met at a bar/restaurant and got to do a Q&A with our local Tandem T-Slim pump rep.  As much as I have read about the T-Slim and know people who have it, it was extremely informative and very cool to get to play with the actual pump a bit.  A few items of note (well for me and these are in no specific order, just how my mind recalled them):

  • I got to grill the rep on the finances of the company.
  • I did not realize that the developers and financiers are from the same company that created Symilin.  I had a horrendously BAD experience on Symlin.  Like really, really bad.  Like dangerously bad.
  • To my objection that there is no back-up battery for the T Slim (it’s rechargeable which scares the shirt off of me after losing power for 6 days during hurricane Sandy), the rep suggested getting one of those mini portable chargers you can get at the drug store (they take 2 batteries).  Almost like having a portable battery back-up, I guess.
  • The charging time for the T Slim was much shorter than I thought and it does NOT need to be almost drained before you charge it (like old cell phones).
  • I was impressed by ALL of the features that make the T-Slim advantageous to other pumps while on airplanes (cabin pressure issues).  I found this part super interesting (and although I didn’t totally understand it, the differences in the venting system were cool… get it?  Venting?  Cool?  That’s 3 cups of coffee making these jokes people!).
  • Alarm for the pump getting too hot and possibly compromising insulin.  I think I’ve had this issue in the summer months and this is an advantage to me.
  • FONT:  On some of the screens I found the font a bit small (and I was wearing my glasses).  The font size can’t be changed.  Insert bigger-is-better jokes.
  • Cut off: If a piano fell out of the sky and landed on me, I’d probably have problems far bigger than my pump getting crushed.  The maximum amount of insulin I ever have in my pump is approximately 110 units.  My total daily does ranges from 18.5 to 24 units a day.  According to the rep, if my pump were smashed, I could possibly get injected with 110 units at once.  I’m fairly certain 4 days of insulin all at once, could be the end of me.  With the T-Slim, due to how the reservoir works, it would apparently be impossible for it to give all the insulin at once.  I didn’t totally get that part but weird stuff falls off NYC buildings all the time so safety is important.
Incredibly dark space.  We used flashlights on phones to snap this pic.

Incredibly dark space. We used flashlights on phones to snap this pic.

  • I think reps believe we all want to hear that a company isn’t in it for the money.  Tandem just made their first profit this previous quarter.  That doesn’t sell me.  I want a pump from a big profitable business.  I want to know if something goes wrong, they can afford to fix it.  I also want to know a company is investing in “what’s next” all the time.  I want to know they can afford the patent process.  I want to hear they have lobbyist.  This DOES not mean they can’t handle these issues, but there is a comfort to ME knowing a company like Johnson & Johnson is diversified and not just making one product.  Yeah, I’m a nerd but a pump is a huge investment and something we need to rely on completely.
  • When statistics are rattled off to me about a pump having larger growth (in the market place) than any other pump available, I think to myself “No shirt, Sherlock”.  If your pump is brand spanking new, your sales figures (percentage) started at zero.  If your growth percentage is NOT the biggest, you’re in big trouble.
  • Sitting in a bar with 4 other young women learning about the T-Slim from a rep who demonstrated from both from a T Slim pump and from his IPad was interesting.  Occasionally I would forget where we were, look up and see guys staring from the bar.  Gotta wonder what they were thinking.  A bunch of ladies pouring over some sort of technology sales presentation in a loud and very dark bar.  Sexy, smart?  Or weird and possibly illegal activity going on in the corner?
  • I was impressed that the rep sat there for 3 hours answering our questions (and he ordered food but never got to eat it).
  • Another item I appreciate is that the basal rates go to the thousandth decimal point.  That was a factor in my Animas pump decision.  My regular weekday basal rate runs at .425, .475, .600, and back to .475.  I think that those fractions are helpful for me.
  • The Tandem rep is not T1D, but has members in his extended family who are.  The NYC 1/2 Marathon is this Sunday.  There are 33 runners on the JDRF Team.  This rep is one of them.  Does that make me like the T-Slim more?  Yes.  Should anyone be using this logic to make a decision about a pump?  No way.  I do however think (to me), it gives the T Slim a bonus point.
  • I am not due for a new pump any time soon however I would consider the T-Slim much more than I would have before.
The worst photo ever taken.  No, I was not in a moving vehicle.

The worst photo ever taken. No, I was not in a moving vehicle.

Captain, Tenille and Dora the Explorer Take the Subway

I hopped the subway last week, late in the afternoon.  It wasn’t rush hour, but was just crowded enough that I didn’t get a seat.  I stood against the door and within a second I noticed the woman sitting across from me.  She was older, significantly overweight, and had a haircut that reminded me of Tennile (of Captain and Tennile fame… yes I date myself with my old lady Pop culture references).  I’ve lived in NYC a long time.  I have encountered my fair share of crazy.  Heck, I’m pretty sure there are people who readily describe me as crazy.  I’m not gonna lie, she gave off a crazy vibe.

Image from http://abclocal.go.com/ktrk/story?section=news/entertainment&id=9404844

Image from ABC News

My eyes immediately spotted something on her lap (you know, after I’d finished thinking myself quite the smartie recalling Tennile’s name and hair style).  The woman on the subway held onto a box with both hands.   The box was bright yellow and I immediately recognized the device photographed on the front.  That mini Freestyle blood glucose meter.  The top of the box was ripped off and paperwork was sticking out.  My heart lept.  One of MY PEOPLE.  I kept staring in a you-are -half-staring-at-people-on-the-subway sort of way.  I wondered what her story was.  I thought I should tell her I’m diabetic too.  My internal dialog then laughed at me.  If I saw another woman on the subway would I say to her, “hey I’m a woman too” and high-five her?  If I saw someone with the same brand of sneakers on would I say, “Oh I love Brooks too.. we should be running friends”?  I kept my non-staring, staring.  At the next stop, the person next to Tennile With The Freestyle Meter, got off the train so I grabbed the seat.  I sat there thinking, “Should I say something?  Am I crazier than this lady since I’m having this whole conversation in my head?  Why is there so much stuff sticking out of that box?”

Freestyle image from Walgreens

Freestyle image from Walgreens

I made a deal with myself.  If she didn’t get off at the next stop, I would say something.  We diabetics need to stick together right?  Being kind is a personal goal of mine and chatting is kindness right?  Sort of?  Or am I just a busy body who should be reading my book and minding my own business?

The next stop.  Tenille FreeStyle didn’t budge.  Neither did I.

Go time!

“Hi.  I noticed your glucose meter box (me, pointing at box).  Do you have diabetes?”

She barely turned her head (another sign of crazy maybe) and answered, “Yes”.

“Me too!” (I tried to sound like “yeah, whatever, cool” but am pretty sure I probably sounded way too excited, like a cartoon character).

She turned slightly but was still looking at me out of the corner of her eyes.  I also now had the attention of some fellow commuters who were practicing their non-staring-totally-staring look.  She said, “Doctor says I got it again real bad.  Blood over 300.  They gave me this” (I’m going to assume this was the box with the BG meter).

Hmmmm.  “Again”  threw me a bit.  “Got it real bad” made me wince slightly in that my-pancreas-quit-when-I-was-6-years-old-and-I’m-pretty-sure-I-don’t-have-it-“real good” kind of way.  Oh and did your doctor actually say that, because if so I’d like to rattle them.

My turn.

“Well I’ve been diabetic for almost 35 years.  It isn’t easy, but if I can do it, you can do it too.”

Tenille FreeStyle turned to look at me. She quickly looked me up and down and turned back to facing forward.

Nothing.  Awkward silence.  Ummmmm.

Next stop a woman got onto the subway with a very small child.  There were many more people now.  Unlike my fellow seated commuters who apparently were raised by wolves, I offered my seat to the woman with a kid who looked exactly like Dora The Explorer.  She nodded, took my seat, and pulled Dora onto her lap.

I stood to an angle overlooking Tenille FreeStyle.  Her eyes darted around but she definitely was NOT making eye contact with me.  Next stop, more people.  Now I had to move further from Tenille FreeStyle.  Well that was a bust.  At least Dora the Explorer was smiling at me.

My stop.  Dora and her Mom were getting off ahead of me.  I saw Tenille Freestyle give me a darting look as she slid into the corner spot where Dora and her Mom were sitting.  I thought I should say something.  What?  “Good luck”?  That sounded so lame but I needed to get off the train and way too many people were exiting all at once.  I looked down.  Tenille FreeStyle beat me too it.

“Thanks for talking.”

I’m not sure if she meant diabetes stuff or just that I spoke to her.

“I meant what I said, even when it doesn’t feel like it, you REALLY can do this.”

She thanked me again and said OK and I gave her a big smile.

I got off the train.  The whole thing was odd.  I blocked people getting on the train and they were clearly angry pushing into me as they tried getting where they were going.  I was the lone salmon swimming against the 6 train.

I walked down the platform thinking about Tenille Freestyle.   She’d smiled back at me as I left the train.  Her teeth were very mangled.  I thought how I really need to make a dentist appointment.  I thought how this little experience wasn’t a diabetes thing at all (I mean it is but it’s more than that).  It’s about being compassionate.  It’s about being kind.  But was I just kind because of diabetes?  I never would have spoken to her otherwise.  My immediate reaction was something was off with her.  I spoke to her because I thought she probably has diabetes and therefore I felt compelled to say something.  Hmmm.

I thought about how there are plenty of times that I feel burdened by diabetes.  That I am scared, sometimes really scared and that there are times I don’t feel I can necessarily just do it.  I usually keep these thoughts to myself.  Saying it out loud could make it true (and send up a major red flag to people who know me and give me a few more points in the crazy column).

Did I just lie to Tenille FreeStyle?  No.  I told her the truth.  I do think she can do it, and it is not easy.  If I’m willing to believe in a stranger, I need to believe a bit more in myself too.

Thanks Tenille FreeStyle.

*Please note: in an earlier paragraph I referenced people raised by wolves perhaps lacking the manners to give up their seat on the subway to someone in need.  I do not personally know any wolves.  I’m sorry if any wolves were offended by my comment.

 

The Love Train, Passion & Charo

Real quick…. Don’t have much time for blogging these days so here are a few food-for-thought-esque items:

1. I “followed” a woman around CVS to get a photo of her dog.  I thought the dog looked like Charo when I saw it on the street.  Yes, I then turned around and chased them through a store.  Cuchi, cuchi. I love this dog (the dog’s real name is Blanche).

charoJPG

 

2.  Someone once gave me the advice of taking a photo of your pump’s basal settings.  This is REALLY good advice.  When things go wrong, this is REALLY important stuff.  Do it.  Now.  I will wait.  Go.  Trust me.

basals

 

3.  I saw this sign last night on the subway.

diabetes subway

When the gal sitting in front of the sign got out at Grand Central Station, I took the fastest photo ever (everyone was walking into me at the same time… human bumper cars).  I have issues with this sign.  I DO want a healthier NYC.  I also have a huge desire to eradicate the belief that I had too much sugar as a kid and developed T1D.  I also would like it noted I never had orange soda. This will be it’s own blog post someday (the sign, not some lack of orange soda).  Which leads me to a post I think is effing brilliant (and if you missed this, do yourself a favor & absorb this one) from over at Sweetly Voiced.  If you are still reading my gibberish and skipped over the link in the last sentence, go back and click on it.  Worth it.

4.  This is what my Dexcom looked like this morning.

90

Pretty sweet.  My Low alarm is set at 90.  90 and steady is awesome.  You know what’s not so awesome? The alarm going off over and over at a 90 bg when you just want a few more minutes of sleep.  The alternative is to be 90 and dropping and not feeling it and never waking up again, so I guess that pesky alarm will just have to remain. Ahhh 90… you torture me with your goodness.

5.  This morning I saw this on a subway sign:

l train

 

Look closely at the “L”.  there’s a heart!  The L train is the LOVE train?  Say what?  Good stuff people.

6.  I read this earlier today after all the 90 bg alarming business.   I’m sure there’s a way to tie this into diabetes stuff but I’ll leave that one up to you (I gotta go).  I think it’s terrific.  Happy Wednesday.

“I began to realize how important it was to be an enthusiast in life. He taught me that if you are interested in something, no matter what it is, go at it at full speed ahead. Embrace it with both arms, hug it, love it and above all become passionate about it. Lukewarm is no good. Hot is no good either. White hot and passionate is the only thing to be.”

Roald Dahl (1916-1990); British novelist

Kicking It in NYC

ASC sign1Let’s face it, I’m really not sure there will be a cure for Type 1 Diabetes in my lifetime.  I do know though, I will absolutely be part of finding the cure for Type 1 Diabetes.  This dream, idea, vision of mine has grown with intensity as I’ve gotten older.  I’ve been a T1D for 34 years.  That’s a long time.

I became involved with JDRF, because of my parents.  JDRF was their calm in the storm after I was diagnosed in 1979.  JDRF was still in its infancy at the time, but now stands the largest charitable supporter of T1D research.  JDRF and the families my parents met, managed to give my family HOPE.  My parents passed this HOPE along to me.  At 6 years old, my parents showed me what it’s like to pour your self into a cause and to BELIEVE. (check out my Mom’s 4-letter word)

In 2001, I founded Alecia’s Stem Cells in New York City with a tremendous amount of help from my friends.  A lot of things have changed in my diabetes world since that time.  One thing that hasn’t changed though is that our team is still based on friends and family who are willing to sacrifice their time and money (and often lend their creativity). They too will BE part of the Cure.

asc dodgeAlecia’s Stem Cells has had teams walk in Queens, Manhattan/Brooklyn, Boston and Los Angeles.  Our team has raised OVER $200,000 towards JDRF’s mission to cure diabetes by funding crucial research!  This is incredible and this is because of YOU!  YOU too are part of the CURE.

 

This past November, I was asked to speak along with Michael Strahan at a JDRF NYC Fundraiser.  It was a fun event but most importantly, it gave me a chance to share my view.  I got to tell parents of T1D kids about my story.  How I’ve been diabetic for 34 years, about how I DO understand how they may be angry that there isn’t a cure yet, but how I am proof positive of how technology has changed and is advancing diabetes care and treatments.  I told them how I envy their children. I told them that the glucose monitors and insulin pumps I use along with their children simply didn’t exist when I was their child’s age.  I told how to check my glucose levels,I would pee in a cup and add some chemicals and that gave a glucose “range”.  THAT range that was flawed.  I showed off my Continuous Glucose monitor that I wore on my arm.  I explained how these technologies are not a cure BUT they are advances.  They are advances that come from critical research. Research is the key component of JDRF.

This June, I was honored to be voted to the Board of JDRF NYC.  At the same time, I also became the Coordinator of JDRF’s Adult Type 1 Group.  Both of these opportunities will hopefully enable me to take another step in my NEED to make a difference.  Government advocacy and peer-to-peer support?  Yes, sign me up.  There’s a third part to this news though.  I consider it my diabetes TRIFECTA.  I’ve started the process to participate in diabetes clinical trials.  Maybe Alecia’s Stem Cells should be Alecia’s Lab Rats?

So one last thought, I’m 40 years old now.  I think about how someday I won’t be here anymore, but hey, none of us will.  I wonder what my legacy will be.  I hope that my nephew and soon to be either niece or nephew live healthy and happy lives and have families of their own.  Maybe they will mention me as their creative aunt.  I HOPE they remember that I always followed my heart.  I REALLY HOPE they never have to worry about T1D in their own children.  I HOPE that someday they talk about how their aunt had a friend who told her one time that there are two types of people… victims, and ass-kickers and their Aunt Alecia was an ass-kicker and yes, she helped cure diabetes.

I am not willing to sit back and wait for change.  I will be part of it.  Be part of it with me. Grab your sneakers and walk with me.  Walk for the other 3 million people in the US who are also fighting T1D.  Walk for hope. WALK FOR MY HOPE.  Support our team. CHEER US ON!

You can join and/or support Alecia’s Stem Cells at: http://www2.jdrf.org/goto/AleciasStemCells

Xo,

Alecia the Ass-kicker

WALK 2012 - Brooklyn 1/2 way mark