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

Updates, Cussing and Such

Busy, busy, busy so a quick update (also I have another post after this one):

  • I never finished the post about my eye doctor appointment.  So here’s the short summary.  I am fine.  I took lots of pics at the office.  I was there for HOURS.  Is anyone losing sleep at night because I never wrote the down and deep about my eye doctor appoint?  No?  Okay, let’s move on and I’ll get info together for another time.
  • I read this earlier today:  “To strengthen the muscles of your heart, the best exercise is lifting someone else’s spirit whenever you can.” – Dodinsky.  Do Good, Feel Good.

    Brooklyn heart

    Found on Sunday in Brooklyn Heights

  • My ongoing issues with my pump sites going bad immediately after inserting and blood bath moments in my bathroom have remained but I have had 2 good sites in a row so that’s encouraging.  The discouraging part is my insurance won’t budge on my allotment of sites.  I went through 6 in a weekend.  I will be completely screwed towards the end of this 3 month prescription and forced to either leave in sites too long or switch back to shots.  No way Jose.  I’m an Inset kinda girl.  I like awesome packaging the doubles as the inserter.  I like pink and blue sites (I’m totally anti green though.  TOTALLY).  Today I was able to try out the Inset 30.  Things have changed since I used the equivalent version (Silhouettes) back in my MiniMed pumping days.  Although the needle still looks obnoxiously rude (like it’s going to spew curse words I’ve never even heard at me), there is now an inserter.  Yeah, I was nervous putting it in but not that pale, sweaty way that used to happen as my hands shook back in my manual insertion days.  It’s funny though that just looking at this new (well new to me) site took me right back to my first NYC apartment and pep talking myself as my hands shook trying to get those damn sites in.  So, I am currently wearing my old blue Inset (I can’t risk another blood bath at work.  Mint green pants and a white lace shirt SO does NOT go with my ruby red blood).  I also have my Dexcom on my tummy.  I am one hot stuff robot lady today.  Woo Wee. (I can’t show the Dexcom because  I’m keeping SurfaceFine PG… well for today). 

    2 sites.  1 tummy.

    2 sites. 1 tummy.

  • I have finally finished my JDRF Walk letter.  I wrote an earlier version that I tried out on a few people last week.  It had one of 2 reactions.  It either made people cry, like really cry and hug me or TOTAL radio silence.  Like no email, text, IM silence.  Oh well.  My new letter is a bit long but it touches on what I think is important.  Once I clean it up a bit, I’ll post it here. 
  • I need to stop cussing so much.  I’m not sure if this is diabetes related or not.  F*ck Diabetes?  Yeah, totally diabetes related.  Oh and PG is over now.