Be good. ONE Walk

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?

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

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!

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.

Batman Makes Dexcom Appearance

Yesterday.  Day off from gym.  No overnight basal reduction needed (or so I thought).  Exciting dinner of avocado and PopCorners (OMG they are so good).  Glass of wine.  Went to bed. Fought Dexcom beeping lows from 12:30am onward.  Slept in normal spot… inside of bed (against wall).  On outside of bed: Ipad, cellphone, Dexcom, dog, dog’s BFF toy Froggie, entire jar of Glucolift tablets.  Ate periodic tabs.  Hugged dog.  Dog annoyed. BG would come back up, but still too low.

Dragged this morning.  Shower.  Coffee.  Subway.  Therapy.  Latte.  Dexcom beeping.  Too high. Correction + bolus.  Bought flowers for office.  Subway.  Office.  Shared piece of toast with office mate. Bolus. More coffee.  Bg too high.  mini Correction.  Work.  Make jokes.  Realize no one likes rap Friday.   More working.  BG still to high.  Must be patient.  Busy.  Go to check Dexcom.  Straight arrow down.  Candy.  Keep working.  More beeping.  Double arrow down.  Use last (very old) Quick Stick. Wait.  Sad that Quick Stick is gone. Put quarters in JDRF jar for all the F-bombs I dropped.  $1.50 total.

Quick Sticks

Quick Sticks

And then ***PRESTO*** …..

Dexcom Batman!

Dexcom Batman

Dexcom Batmanhow-to-draw-batman-easy-step-6_1_000000094181_3

Not the ideal BUT there’s gotta be some entertainment value in this right?

 

Melissa, Marina and Freddy

Throwback Thursday.

fish

 

Many, many years ago, I thought I caught a trash bag while fishing with my family.  Nope.  I caught a flounder that made me the Second place Cape May County Flounder Fishing Champion for that summer.  I was mentioned in a local newspaper, received an official champion certificate, and a fishing pin to be worn on my non-existent fishing cap.  Pretty damn exciting.  Beating both of my brothers for Biggest Fish Caught on our trip was amazing.  Finding out I was the second place Cape May County champ and watching the looks of disbelief on my brother’s faces was effing awesome (especially since I thought I had caught a trash bag).

Was it fair?  I did bait my own hook so by family rules, it did “count”.  As evidenced by the photo, I was too scared to hold Freddy the Flounder while on the dock.  Notice my hands pinned awkwardly at my sides and the nervous/proud/just-luck-I-guess smile on my face.  That is the first mate’s hand holding MY fish in front of me.  What I lacked in fish holding, I made up for in bragging enthusiasm.  My brothers weren’t amused on the car ride home as I went on and on and on about how cool it was to be the ONLY member of our family to EVER get placed on the HUGE Cape May County fish board.

When I saw this fishy photo today, it made me smile.  So proud and jumping around like I had ants in my pants, until I was supposed to hold Freddy, and then I froze.  Everyone shocked.  I was considered the least “into” fishing and yet I won.  Winner, winner chicken (well flounder) dinner.  How was that fair?

It wasn’t fair.  Like so very many other things in life, it wasn’t fair.  And that’s my favorite part of the story.  We were on the boat the whole day.  No one on the boat had caught anything for awhile.  The Captain decided to move so we could fish in another spot.  Everyone reeled in their lines lickity-split, except for me.  I was teased by both brothers, all of us simultaneously realizing my upper body strength was truly pathetic.  As my rod’s hook and weight got closer, it became more and more difficult to reel it in, but the pull didn’t seem like there was a fish on the line (This wasn’t my first time at the rodeo, errr, Atlantic Ocean.  I’d caught flounder before).  I remember thinking how cool it would be if there REALLY was a fish on my line after all this upper body weakness embarrassment.  I was wishing for that magical, “NO WAY”, moment.  Everyone was watching and I swear to God it looked like a shadow for a second and then like a big black trashbag being pulled to the surface.

Here’s what you need to know about flounder fishing.  You do NOT yank the line into the boat with the fish on the end.  Big No-No.  It won’t stay on the hook (I’ll spare you the details). You get the fish to the surface and then scoop with a net.  As the fish disguised as a trashbag came to the surface, the 1st mate yelled to me to stop.  Give me a break, dude.  My brothers were still mocking my lack of muscle tone.

“You caught a BIG one!!”

Huh?  I did?

Nope, not fair.  Luck.  And that’s why if you’ve made it this far in my fishing story, I implore you to read Melissa’s post from Diabetes Daily, “Diabetes Complications are Complicated” (If you haven’t already read it five times like I have).  She absolutely nails it and touches on things that have been on my mind…  guilty and frightened…yep, nails it.  Diabetes complications… nope, not fair… who is lucky?

Today there was a response to Melissa’s post (also on Diabetes Daily) from Marina, “To LOVE A Thing That’s Always Trying To Kill You: Diabetes“.  Wow and WOW.  Again, this touches on so much of where my mind wonders, and the very core of the place I have been struggling for months, “I am worth this struggle”…?

I’ve read Marianna’s post 3 times today and everytime, my eyes tend to get a little watery (allergies?) when I reach, “I am worth this struggle”…. This is my struggle, plain and simple.  If this mantra in any way can lift some of the weight of all this…. that anchor in my mind that seems a little heavier these days, I will gladly repeat this mantra to myself a hundred times a day.

I’ve got much more upper body strength these days.  I need to reel in that anchor a little bit now or I will sink.  I am worth this struggle.  How very beautiful.

 

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.

 

Hammer Time

Today’s post was supposed to be about an diabetes incident/ talking-to-a-stranger moment I had on the subway last week.  However, I read the following quote from Eleanor Roosevelt this morning and thought, “Oh My God, THAT’s IT.”  I will probably read this a thousand more time this week. To diabetes and beyond… Thanks Eleanor Roosevelt and this is why if I could have dinner with any famous person, dead or alive, she is STILL my #1.

“You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.”

– Eleanor Roosevelt

Powerful words.

Now, in other news, I haven’t been to a Spin class in years but I will be participating in the JDRF event this Saturday (March 8th).  In NYC?  Looking for some exercise?  Want to try a David Barton class without becoming a member? Want to support JDRF?  Want to join me?  Want to push me back-up onto my bike when I keel over but my feet are still tied to the pedals?

http://www2.jdrf.org/site/TR/TeamJDRF/Chapter-NewYorkCity4456?pg=entry&fr_id=3629

Facing Fear.

STOP.  Hammer time.

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