Each individual affected by spondylitis has their own unique story. We at SAA believe that each and every story can be a source of inspiration and empowerment. We’d love your story as well! Send it to us at Programs@spondylitis.org
By Felecia Campbell
Tuesday, January 17, 2017
Hi. My name is Felecia. I’m from Portland, Oregon. I’m a social worker and a songwriter. And this is a little bit about my life with AS and how life goes on if you just keep moving.
When I play music, I forget that I have any problems at all, not just AS or any of the diseases it comes with.
It makes my soul dance a little bit.
After a show sometimes, I get a little tired. The brain fog builds up. That’s the hardest part. It helps though because little things in everyday AS life, like remembering to take medications or to sit up straight -- you know -- that memorization is a really good technique to have for music.
Go on lots of walks. Walking is very therapeutic for me. Playing music. Just finding a good chord progression will make my body feel a little less painful.
Hey, did you know the ankylosaurus was a real dinosaur?
I didn’t know that.
It had a fused spine.
I go there
Grab a warm blanket
Stick a cold needle in my arm
I'm loaded on - Antihistamines and they kill what's left inside of me
I'm going in every 6 weeks and they still remember me
Even though I'm starting to disappear
I'm counting on - 3 days of sleepless nights
Chest pains and bright lights
Stinging my eyes so bad I can't even read
My favorite books sit on shelves waiting to be loved and held
The way this disease holds me
And it's a music infusion
Stick it into me --
Carolina, bring me my pills
Can't always get them refilled
All these scripts spell my name backwards
Have you ever felt so much pain?
You know I don't like to complain
But sometimes I do
I'm too damn -- Little to have all these big words
Infecting me and my world
I've been through hell and back
And it never stops
It never stops
I wake up and find myself right where I started out
Well it's a music infusion
Take it out
Why won't you, won't you take it out --
I feel weak on in the inside
So how can I be strong on outside?
I'm trapped within this body
I can't play but you can't sing the way I do
The way I do
The way I do --
Check out Felecia's discography: https://feleciaandthedinosaur.bandcamp.com/
See Felecia on The Faces of Ankylosing Spondylitis: https://thefacesofankylosingspondylitis.com/a-s-face-0949-felecia-campbell/
Other posts by Felecia Campbell
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