Whoever said “live like you are dying” was a real twerp.  Seriously. If everyone lived each moment like it was their last, the world would fall to pieces.  Think about it: Everyone would quit their jobs.  We’d all gain at least 20 pounds each. bread. cheese. chocolate. cheese. Christmas decorations would be up all year round. Hugging…so much hugging.  Whitney Huston’s “One Moment in Time” on a constant loop. We’d all just walk around sobbing at every puppy and sunset we saw, wondering if it would be our last. That’s no way to live! As a matter of fact…it’s exhausting. Depressing! Have you ever watched Beaches, Step Mom or Old Yeller?! Well… multiply that by 10 and you maybe have a taste of what that would feel like.  Trust me.

In August of last year, I was diagnosed with a rare terminal lung disease called Pulmonary Veno Occlusive Disease or PVOD. It’s a rare form of Pulmonary Hypertension or PH, which is a fancy way of saying that my lungs aren’t getting enough oxygen and my heart is having to work extra hard to pump oxygenated blood to all my important organs. Not much is known about this disease and the only major treatment is a lung transplant.

The odds of getting diagnosed with such a disease: 1 in 6 million.

Here are some other statistics that should help put this into perspective:

Odds of being born with 11 fingers or toes: 1 in 500

Odds of winning an Oscar:  1 in 11,500

Odds of being struck by lightning:  1 in 700,000

Odds of becoming a billionaire:  1 in 7,000,000

Odds of becoming President of the U.S.:  1 in 10,000,000

So based on my luck, I should be a lightning survivor, billionaire Oscar winner with 11 toes, running for president.

But alas…I am none of these things.  Instead, I am sick.  I’ve got a bad pair of lungs. And that’s ok.

I really really don’t want this blog to be sad. or depressing.  We have enough Twilight moms, Jersey Shore millionaires and pet obesity for that. What I do want is 1) to help anyone in a similar situation 2) raise awareness for organ donation and this beast of a disease (which often goes misdiagnosed, if diagnosed at all) 3) to rant to something that isn’t my husband because there’s only so much tender face caressing a man can take. Poor guy.

Let me be honest…lung disease sucks.  Oxygen tubes dry out my nose and I feel more geriatric than vicenarian…but most of the time…I’m really happy.  Like truly happy.  I have the most wonderful husband who throws me into an attack every 5 minutes from laughing so hard.  I have supportive family and friends who at any given moment would drop anything to help me. I still go to work. I still shower.  I still wear pants….ok, maybe I don’t (Maybe I never did).  I still eat everything that’s in front of me (probably not helping). And there’s still hope. And where there’s hope (and faith), there is peace.

I’ve been blessed with a condition that makes me acutely aware of my existence. And I find it my duty to impart with you one of the truths I have learned about that existence thus far. It is this: we are all going to die someday, but…we will live until we do. Shocking, I know! If you are reading this, then you are still alive!  So…quit your job, turn up the Whitney Huston and get to gaining that 20 pounds or simply follow Snookie’s advice, “steal a plant, get arrested, and then do whatever,” because congratulations, you’re lucky like me.