Of Disney and of Victories

The Photo on the left is me and my 2 1/2 year old son on the Kilimanjaro Safari at Disney's Animal Kingdom, January 2013. The photo on the right being our most recent trip this past July, on the same attraction!

Back in 2013, Aviel and I traveled all the way to the Happiest Place on Earth from our home in Israel for a family reunion, and one that would change my life forever. 

When I moved to Israel, I thought my Disney days were over.  In fact, the summer that I lived in Jerusalem while Devin and I were engaged, I remember downloading every behind-the-scenes and travel documentaries on Walt Disney World Parks and Resorts that I could find on iTunes.  Giving up this part of my childhood, this hope of something my own children would experience, was something I mourned. 

That particular 2013 trip was a surprise.  I don't know exactly what was taking place on the North Carolina end of things, but my three sisters, brother, and Dad (all Disnerds) decided that we should go on a big extended family trip, the first we had all done together in years, and now with a new generation to boot!  This trip was also the first time I met my now Step Mom, Donna.  She stayed with Aviel and mw in our room at Disney's Wilderness Lodge (We had the concierges level that year.  It was amazing).  Donna arrived a day after the rest of us, and I remember my dad saying, "You'll like her.  She loves the Mouse." (She also loves the Lord, and he was right, I loved her). 

The invitation to go was something I never expected.  Of course, Devin could not take off work in January, so Aviel and I prepared to go alone.  And not without some angst.     

I was nervous and embarrassed to see my highly athletic family because my face had swollen, turned red, and I had gain a few pounds.  That was only what you could see.  I was dealing with a number of oddities in my body that simply did not make sense. 

Before heading to Florida with my dad, siblings and crew, we stopped in North Carolina to stay with my mom for a few days. Her husband was a General Practitioner,  and I had just enough guts to tell him, "I've been googling and I think I might have Cushing's Disease."   Cushing's is literally a rare one in million disease.  I had know him long enough to trust that he knew I was not a hypochondriac, but rather an intelligent research-aholic who knew how to evaluate scholarly information.  Even so,  he was skeptical at first but said that I had enough symptoms (including secondary infertility) that he thought it might help my "peace of mind" do to some tests.   You can read more about how I self-diagnosed this rare condition in How I Figured It Out).

I did a simple fasting blood test in his office the next morning. A few days later, I'll never forget the phone call I answered in my room at  Disney's Wilderness Lodge where we were staying.

"Callie, I'm sorry to tell you this on your vacation but your coritsol is *extremely* high. You really might have Cushing's Disease. When you get back I'll give you the labs and some instructions for your GP in Israel."

He also said, "Callie, if this isn't Cushing's, what might be going on to make your cortisol so high?" (cortisol, of course, being a stress hormone). 

"Well, it couldn't possibly be missiles flying overhead."  I joked (but not really), as we had just gone through a conflict the November before.   

I enjoyed that trip with my whole heart because I didn't know what life was going to be like when we got back home to Jerusalem. 

And as was suggested, I followed up right away.  I took the labs from North Carolina to my Family Doctor in Israel, and she was amazing. She immediately ordered ALL THE TESTS and SCANS, necessary for an accurate diagnosis. 

It took 7 months of searching,  but they located a tumor on my pituitary gland and I had the neurosurgery surgery to remove it on Sep 17 2013 in Tel Aviv.

Its been almost 4 years now and look how we've changed! No more moon face- high school weight, the little guy is 7 now, and we have 2 Post-Cushings-Princesses ( 2 and 8 months, and 8 months in the photo)!

We have also been blessed to visit Walt Disney World Resort twice since then, thanks Daddy and Donna for donating their Disney Vacation Club points to our growing family.  

My Cushing's story was an easier journey for me than most who struggle for years to find a diagnosis,  but it was still not easy (heart aching for more babies in a developing nation, away from family, with wars and terrorists, no car, walking everywhere with groceries and crying baby while cortisol is crashing sort of hard). Life is good, though, and so worth living!

Honestly, though, had my family not made the decision to go on that particular Disney Reunion, I don't know how long that tumor would have remained hidden in my brain.  Reading stories about the struggle so many women faced in finding a health care provider who would listen, I don't know that I would have had the courage to go in and share with my doctor those words that I spoke in North Carolina (remember... "I've been googling and..."). 

Having first recieved actual medical evidence that I was really sick... and this wasn't just some weight gain or hormonal body changes while on a Disney vacation was also a gift.  Not only did it give me something to do, a place to be joyful and busy rather than thinking the worst, I also now associate Disney Parks, not only with fireworks, but with victory. 

To my fellow Cushies, keep pushing for answers, keep working towards recovering... and maybe do a Disney trip... because, FUN! 

Just keep swimming. 

And remember: 

"...in all these things we are more than conquerors through him who loved us."  Romans 8:37


I Ate Falafel at Epcot

The Not-So-Cinderella Happily Ever After


Popular Posts