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:

6 thoughts on “33 out of 39

  1. Love it girl. We lived much of the same life a few years apart :-). I didn’t test my blood in college cuz then it took FIVE minutes!!!! Miss you, love you, and we will take care of each other when we are old, OK???? RRRRRRRRrrrr

  2. Wow, that sure is a lot to say! Replace “Dexcom” with “Minimed”, and replace “turning 40” with “turning 39”, and I think you’ve got my own biography right there! (Oh yeah, also take out the boyfriends part. I didn’t date much, and I married the — I think — fourth girl I dated. But the rest is so true, and so real. And me too, I live!

  3. It makes me feel good to read you. I try to keep this philosophy too “The Me first” and ” the diabetic me” second. Otherwise, my life would only turn around a pump and a tablet of sugar. I try to make the best choices and to live healthy but when I eat fries or a drink too much, I try not to think about the consequences and LIVE the present moment. Not easy! When I worry about tomorrow, the uncertainty and the doubts that the future holds with juvenile diabetes are too scary , so I prefer to just live…conscientiously 🙂 !

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