Rare Disease Day 2021

Today is an important day for a lot of chronically ill individuals, especially those with rare diseases. Rare Disease Day used to only be on February 29th but now it’s celebrated annually on the last day of February. I took time to reflect on the years that have culminated in each diagnosis, each adding another stripe. Each of these photos speak to a part of me that you all may see or know. Some maybe you don’t.

My medical mess tee from @spooniesistershop because, well that’s just a fact. I’m like a rainbow zebra. 🦓🌈

My Pink Ribbon Warrior Shirt shows something I don’t talk about often. I have been fortunate enough to have and beat cancer a couple of times now.

My cozy MCAS, EDS & POTS Awareness sweatshirt represents the main things I share about, advocate for, spend time educating myself on and write about most.

My mermaid tank is just real me… If I knew how to photoshop out my port, my ugly scars and the tape that’s helping move fluid out of my arm and away from said ugly scar I would. But I have a tattoo of a mermaid similar to this that runs from my hip down the curve of my leg to behind my knee. I’m a swimmer who loves to swim until I can’t anymore, free dive every chance I get to be in the ocean and my heart is always calling me back to the sea. But my realities have had to be shifted so much as I’ve battled my stripes.

That brings us to a simple face… This is who you’d see if you didn’t know me and ran into me on the street. No filters, but makeup on and tops to cover all my insecurities with a smile to hide the pain.

Finally, something I do not share on social platforms generally… My daughter has a Chiari Malformation and a spinal syrinx the full length of her thoracic space. She may need brain and spinal surgeries. She is the brightest light and so full of hope and joy. We are rare and strong together. 💗

Today I celebrate her… my ‘little bug’ and I celebrate you all! I’m celebrating this community of beautiful, strong, amazing, rare zebras.

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