Week One at Klinik St Georg - Germany

The doctors here are amazing. They know so much more about this disease than anyone I’ve ever met in the U.S. I feel validated in knowing that after being sick for so long there’s a place in the world that specializes in people just like me. Before coming here I was called a medical question mark, and no one could help me. Here, I’m just a “special patient.”

My hyperthermia was rescheduled to Monday due to complications with my body. I’ve been really sick these past few days and I need to be stronger first. This week has been hard. I have 4 holes in my chest, a central line in my neck, and I’ve been under anesthesia twice in 24 hours. I’ve spent my nights throwing up and my meals consist of apple sauce and bread on a good day. I knew coming here wasn’t going to be easy but nothing can prepare the mind and body for this kind of pain.

This journey has shown me a new kind of pain. It runs deep. My strength will have to run deeper.

Since I was a little girl people have told me I’m strong. Doctors have told me I’m brave. Strangers have told me I inspire them. I am strong, but not because I want to be, because I have to be. I think when I want to be strong I have to remind myself that being strong means being vulnerable too. It’s okay to let the tears fall. My tears are the words, poems, and prayers that I don’t speak out loud. All souls need watering, and pain builds warriors. 

Thank you to everyone who has sent prayers my way. I’ll respond to texts whenever I’m able.

I can’t wait for the day when my camera roll is filled with pictures of living instead of pictures of surviving. 📸

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