Fear? Cowabunga Dude


That sentence (and the letter it was attached to) has been on my list of life fears for years and years and years.  Due to a rather complicated (ok, weird) work situation over the past 12 years, I have joked (read: definitely NOT joked) that I would marry for health insurance.  New York State (and NY City) have some health insurance laws (not to mention premiums) that seem to be “different” than many other states.

This “NOT OFFER” is not taking effect right away.  I have a few months.  I will slam my face repeatedly into a window if I have another conversation with my “advisor” at Fill-in-the-Blank Insurance because:

1. He has a name that is only fitting for a child.

2.  He sounds like he just hopped off his skateboard to take my call.

3.  When he told me about the other plan available to me, he explained that other people with my “old timer” plan switched last time they had open enrollment and they all, “REALLY LIKE THEIR NEW PLAN”.  (God I wish I could say his name but I’m afraid someone who reads this has a kid with a cute bowl cut named —- and will be eternally offended).  Really —-?  EveryONE who switched plans likes their new plan?  That’s amazing!  So, how exactly does this “everyone” measurement work?

“Well, no one in my territories has called to complain.”

Seriously, no one has called you, —-, to complain so therefore EVERYONE likes their new plan?  Holy shit, this is my advisor?  (Note: I took Logic in college to fill a core requirement.  I did not do well.  I am sure I beat —- in that class).

4.  When I ask about durable medical equipment coverage, I actually want an answer about durable medical equipment.  Crazy, I know.

5.  When I’m finally told (by someone else) that the plans we are talking about are subject to change in October, before the enrollment period, and I ask —- about this, here’s what I don’t want to hear, “I think you’ll really like the plan everyone else switched to and there will probably be a plan like-that in October”.

6. That phone call required many quarters.  Many.  I would smack —- across the face with his skateboard if I could.

7.  My favorite part was when I said, “So you’re basically telling me I have options that sound like cheaper premiums but less coverage and more expensive costs in almost every other area, but you can’t confirm any of this because the official insurance plans don’t come out until October?  And now I can feel like I’m going to throw-up every day worrying about this for 2 months?  Well at least I’ll be really skinny and sleep is over-rated anyway right?.”  The response, “You really are funny.”  Ugh

Here’s the thing and hey maybe it’s because I’m just a laugh-a-minute, or because it was a day where other huge fears (job related) also happened to come true (oh the timing!), but I’m just not freaking out.  I am so oddly calm, I’m wondering if someone is drugging my coffee.  HUGE fear….happening… not freaking out.  Who am I???  I almost feel guilty that I’m not freaking out, but when you are juggling, more than you ever thought you could realistically juggle, does one more ball in the air change everything?  I dunno, I don’t actually know how to juggle, I find most clowns annoying (unless they make balloon sculptures… balloons change it up completely), and my athleticism doesn’t always lend itself to eye-hand coordination, so I have no one to ask about my juggling theory.

I’ll deal with it (while I attempt to stockpile the eff out of every supply I can get my hands on).*

*I’ve decided “eff” doesn’t count as cursing.






Monday Mantra and Not Dissolving

“You’re off to Great Places!
Today is your day!
Your mountain is waiting,
So… get on your way!” – Dr Seuss

So if you have a lot on the horizon (and some daunting changes), I offer you the following image and story:


At the end of the day yesterday, I decided to clear my head (only temporarily worked) and ride a Citibike along the East River in Manhattan.  On my return trip, I stopped to take a photo and, to both my surprise and horror, I got doused with East River water!  Holy Shirt! Must have been from a boat wake, but no matter where it came from, I have never wanted to touch nor be touched by the East River.  I shockingly did not run home (pedal) and grab rubbing alcohol, and a shower.  I sat on my bike and laughed (like a crazy person which may have been noted by other people who rode by, wondering if I was just really sweaty on one side of my body).  So far, my skin has not dissolved, I have not developed superpowers and my pancreas has not sprung back to life.  Bummer on 2 out of 3 of those.

It’s really OK to be scared out of your fucking mind sometimes (I wasn’t actually thinking my right side would dissolve from East River water… well not after I survived the first minute… I’m talking about other stuff… you know, the splash is a metaphor and stuff).  In a totally bizarre way, sometimes it’s downright great to scared.

I need to go TRY to climb a mountain now.

Yes, quarter put into jar already.

And my last thoughts for the morning, keep smiling, your enemies will absolutely hate it (and you can always go home and have a good cry later right?).





Wimpiss Breath?

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


Melissa, Marina and Freddy

Throwback Thursday.



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.


My Mom’s 4-Letter Word

I’ve been active in JDRF (especially the JDRF Walk-For-A-Cure events) for much of my life.  I have two  Alecia’s Stem Cells teams walking this year (New York City on September 30th and Los Angeles on November 11).  Every year, I write a letter, asking (sometimes begging) my friends and family to participate.  There are years where writing the letter comes easily, while other years I agonize over it.  I try to have the letter ready to go on my diaversary (June 19th) but this year I did a diaversary blog post instead.  So yes, I’m a little behind my own schedule.  It got me thinking though, why JDRF?  I have recently shared my D-blog with my family and decided to ask my Mom, about why my parents got involved specifically in JDRF. Although I was a bossy 6 year old when I was diagnosed, I  wasn’t calling the shots (Get it? Diabetes pun? Shots? Ha) so here’s my Mom, filling in the blanks:

Seriously? My Mom is gorgeous, inside and out.    This was me pre- D.


When asked why did we get involved in JDRF?  The answer came easily.

Alecia, our firstborn child was diagnosed with diabetes at the age of six.  That day, June 19, was a shockingly sad time in our lives.  To say we were blindsided, is exactly how we felt.  This was a child who was the picture of health, extremely bright, adorable, always cheerful and up for anything.  Everything we had ever heard about this disease came running through our minds and we were devastated.  Fear of the unknown was stifling!

Our endocrinologist, Dr. Robert Kaye, was most encouraging.  He gave us the best advice which became our mantra – “Alecia is a child, who happens to have diabetes, not a diabetic who is a child.”  That was the beginning of our journey, becoming immersed in the education of the vast world of living with diabetes.  Dr. Kay suggested we become acquainted with JDRF.  Through our association with them, we quickly realized we were not alone.  JDRF became our lifeline to meet others with small children, to learn from those families who had been down this road and most importantly, we learned fact from fiction about this disease.

We attended lectures, participated in telethons, had Alecia appear in public service announcements and I became a member of JDRF’s board – ultimately running the Philadelphia Zoo walk.  We were always hoping with the funds raised through JDRF that a cure was in the wings to be realized by our precious little girl and all the others afflicted with this life altering disease.

As years passed our daughter grew up, and we did everything possible to ensure her a normal life, participating in various activities like other kids her age.  After college, she moved to NYC and became involved in the NYC Chapter of JDRF and has cultivated a team each year for the annual walk in which her family and friends all participate.  The involvement with JDRF has shifted to her as an adult.

Our memories of working along side Lee Ducat and her leadership of an all embracing foundation (JDF) now JDRF, still remain a source of inspiration. Lee fostered a community to welcome, educate, and most importantly diminish the fear factor for families.  JDRF introduced us to other families who shared the same ultimate goal to help our kid’s lives be relatively normal until the day they discover the four letter word – CURE.

33 out of 39

Sounds like a passing test score right?  I’ve thought way too much about this blog post (read: over thinking is NOT good).  I considered advice I’d give to a new diabetic, or a letter to my siblings (especially my brother who wasn’t even 2 years old when I was diagnosed) for all the times my “up-keep” took away from theirs.

Me & my brother

I imagined a post about the incredible changes in diabetes technology that have occurred in “my” time and my hopes for the future.  Last week, I kept recalling a memory of my high school English research paper on diabetes and how I left out ONE big fact, a book listed the life span of a Type 1 diabetic to be cut by a 1/3 (I didn’t want my class mates to know that but I cried myself silly).  I envisioned listing all the absurd comments people have made when they realized I’m diabetic (that’s still on the blog list for another day… yeah I’m coming for you Jet Blue flight attendant).  But tomorrow is the big day and it’s getting late and here I am.  So here’s what I got:

My parents took the doctor’s advice when I was diagnosed (6/19/79) as their mantra:

I was a child first, and a diabetic second.

That was it.  Plain and simple.  So I did everything every other kid did.  I played sports.  I played a ton of sports I didn’t even want to play.  I went to sleepovers.  I went to sleepovers for kids I didn’t like.  But I lived.  I got yelled at for getting a C+ in Spanish.  I got grounded for mouthing off to my Mom.  I spent too much time on the phone with my friends.  I had so many summer jobs that I’m pretty sure my parents broke all US child labor laws.  I liked boys who had no idea I even existed.  And I lived.

I looked at colleges (side note: my Dad took me to visit Harvard first… no, I was not even close to Harvard material), and I made sure those colleges were not near my parent’s home.  I had roommates who scared me.  I made friends.  I studied Architecture.  I had a fake ID.  I drank too much.  I didn’t do a good job checking my blood but I always took my shots.  I gained 15 lbs my freshman year of college.  It looked more like 25.  I switched majors.  I had boyfriends.  I never once did drugs.  I made questionable fashion choices (hey it was the 90s, cut me some slack).  And I lived.

I got a job (OK that did NOT happen right away).  I moved to NYC.  I got new doctors. I got more serious about my health.  I embarked on a career. I had a boss who believed in me.  Wait, I had a boss who really believed in me.  My job took me all over the world.  I had my eyes lasered more than once.  I took a heck of a lot of shots.  I traveled more.  I pulled the trigger because I was finally ready, and I got a pump.  Pump training took a ton of time.  My college boyfriend broke my heart.  I couldn’t eat.  I got really skinny. I went to therapy to fast forward the healing of my heart.  Therapy taught me some stuff I hadn’t thought about how I viewed being diabetic. I realized I didn’t like the ex-boyfriend that much.   I lived.

I got back in the saddle.  I dated most of Manhattan (and some of Brooklyn).  My career actually took off.   I saw a lot more of the world.  I had crazy adventures.  I started a JDRF Walk Team (Alecia’s Stem Cells).  I got a lot of people to walk.  I hosted team fundraisers. I had big parties to celebrate diabetes anniversaries (Its NYC.  We eat that stuff up).  I recruited my friends and family for all sorts of MY stuff.  I kept designing lamps.  I started designing jewelry.  I tied my jewelry business to my JDRF fundraising.  My work appeared in amazing places.  I went to amazing places.  I lived.

Our 2010 Alecia’s Stem Cells shirts!

I have the same problems other people have.  I have fears many of my peers have never even considered.  I worry about the future.  I am infuriated that stem cell research lags so far behind in this country.  I frequently curse the FDA.  I have begun to curse the TSA.  I worry I will never have kids.  I worry if I did have kids I won’t be alive to see them grown. I worry I will die in my sleep of hypoglycemic unawareness.  I worry that all this diabetes stuff is too much for my boyfriend.  I worry I will need a new kidney. I worry that if I currently pay more for private health insurance than many people’s annual salary, how will this ever possibly turnout well?  I worry every time I get cut.  My current big worry is that I will someday be a burden to my siblings.  My bigger fear is that my future nieces and nephews will be diabetic too and I don’t want my siblings to have that burden.  I worry I won’t get to see the day of the artificial pancreas being available or I’ll be too sick to get one.  I worry that I will fall through the healthcare cracks.  I worry that I worry too much.

And then I take a minor break from worrying.  I work-out.  I get my heart beating.  I get my heart pounding.  I think of my circulation and telling my heart to step up to the plate because my pesky pancreas can’t anymore.  I think of all the parents I’ve met who cry when I speak to them because they consider me an inspiration.  I think of my sister’s college roommate being diagnosed (T1D)  while in college and how she felt I was the only one she could ask questions.  I think of how I fought to get a pump.  I think of how glad I am to have a Dexcom.  I think of how I was the longest living diabetic in my JDRF mentoring class.  I think of turning 40 next year (OK that freaks me out so I immediately STOP thinking of that and then freak out a little more.  40?  Seriously? I act like I’m 12).  I think of how much I value my life.  I think of all the gifts I’ve been given and how truly blessed I am.  I think of this image below (and I apply it to things far beyond running), oh, and by the way, I live: