The Very Beginning with Poppins, Paella, and Petty

In early April, I went with my family to celebrate my 49th (!) birthday at Disneyland, which has become a tradition aimed at making me feel much younger than I actually am.  After a full day of charging hard through both California Adventure and the original park, we had dinner in Downtown Disney, and while I was enjoying my paella, I first felt my muscles start to seize up.  The next day, and everyday thereafter, my muscles continued to swell, ache and lose elasticity.  I went from holding the title of ‘flexibility queen’ in my yoga classes to not being able to straighten my arms, lift my arms overhead, sit on the floor or even open my mouth wide enough to shove in a sandwich.  A trip to the New Orleans Jazz Fest confirmed in my mind that there was definitely a problem.  For 3 straight days, I stood 8-9 hours in the searing heat saving spots on the front rail for my favorite bands:  Tom Petty, Bruce Springsteen and the Beach Boys.  A lot of my neighboring place savers were sitting down between warm up bands, but I couldn’t.  At the end of each day, I was STOKED on the tunes, 99% deaf, and it appeared that my legs had been somehow replaced with those of a pachyderm.  I searched for Allen Funt or Ashton Kutcher, but they were nowhere to be found.  Those were indeed my legs.  I still thought it would just go away on its own, but after a few more weeks, I knew I had to go in and see my primary doctor, who I had seen previously solely to get travel meds.  Dr. C examined me, asked a barrage of questions and was “perplexed” by my symptoms.

Celebrating my 49th with Mary Poppins, Bert and a totally lame penguin that we wanted to kick out of the picture (or just kick).
Eye contact with TP – The BEST!

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I am a survivor of two extremely rare diseases, thanks to over 100 blood transfusions and ultimately, a bone marrow transplant. My blog,, chronicles my adventures through medical offices, operating rooms, clinics, transfusion centers, hospital transplant floors, victory celebrations, and finally my bucket list items – all with a humorous and sometimes profane twist. My goal is to inspire others not to give up on life or anything else, and to understand that it’s actually possible to enjoy any experience, even battling a life-threatening illness (or two).

2 thoughts on “The Very Beginning with Poppins, Paella, and Petty

  1. You should write a book. Your incredibly fun to read and you give a bad situation a funny twist. Wishing you all the best and sending many prayers your way.


  2. Joselyn if you weren’t so darn funny I would be really worried! With your spirit, family & friends you will win! (fight on SC & that from a Bruin is true love!)
    Our family prayers will be with you & family for a final battle with this odd disease.
    Love, Sharon & Mike McCaffrey


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