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Sarah Celebrates Her 1 Year Zipperversary

Almost 2 years ago, I was diagnosed with a disease that (at the time) I didn’t realize would change my entire life.  Chiari Malformation is a debilitating condition that has no cure…only temporary solutions.  A year ago, I underwent 10 1/2 hours of surgery to help limit the symptoms I was having and today I celebrate.

During the Morning Buzz, we spoke to Phil Papadimas, a Physician Assistant with Dr. Bolognese.  Phil worked along side my doctor in New York, and spoke briefly about what Chiari Malformation is:

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My condition, in many ways,  has improved.  I’m so thankful to no longer suffer from pressure headaches.  I still wince at the thought of having one.  Almost traumatized to cough, for fear of inducing one.  But, I’ve been assured, those are a thing of the past.  However, the journey isn’t over.  Everyday is a struggle in its own way.  A day of fun can quickly gift you with a 4 days of pain.  My body can predict the weather better than the Old Farmer’s Almanac.  And I have more surgeries to face in the future.

chiari 2

I never thought I would be someone riddled with chronic pain.  It’s exhausting and zaps the life right out of you.  But, I find that positive attitude, helping people and staying busy gets me through it.  Smiles are often forced.  And I usually lie when you ask me how I’m doing.

Happy

My husband has been my biggest supporter and caretaker.  While I’m in public with a smile on my face…he’s behind me ready to catch me if and when I fall.  He is the only one who sees me cry and knows the true depths of my pain.

pain

Thank you to everyone who  has reached out this year and checked in on me.  I’m grateful for the relationships I have found as a result.  I will fight everyday to find a cure for Chiari Malformation!  I may have it…but it doesn’t have me.

Flashback to when I called into the Morning Buzz from Critical Care Unit:

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