Editor’s Note: As part of our ongoing series of first-person health profiles called “What’s Your Story?” we hear from Kaitlyn Pintor, whose nerve disorder causes pain so severe that she’s often felt like her body has been set on fire. When the pain started nearly a decade ago, Pintor was a single mother of two. She still found time to organize support groups for people who share her chronic pain disorder. Now, a new medication has made her chronic pain more manageable. Pintor speaks to us from HoofBeats riding school in Sonoma County, where she goes for horse therapy. Reporter: Ryder Diaz.
By Kaitlyn Pintor
In 2004, I was diagnosed with Reflex Sympathetic Dystrophy after an ankle sprain. I had burning pain that ended up spreading throughout my body, from head to toe.
It literally feels like you’ve been set on fire and you can’t turn the fire down. Just water brushing over my skin would cause intense flame.
The normal comforts don’t comfort you. You can’t wrap yourself in a blanket. You can’t go soak in the sun. Sounds bother you. Or the laughter of your children may turn your pain up.
You can’t have affection and things any more. As the years progressed, I could feel how that partly changed me. From not being able to embrace my kids in the same way. They were two and five when I was diagnosed, and they’re 13 and 15 now.
It takes a lot of strength to live with pain that people can’t see and to keep telling yourself every day, you’re not crazy.
I’ve used food pantries. I’ve lived off of disability. There were so many times where I just prayed that God would take my life because I couldn’t picture having to sustain at that level of pain for the rest of my life.
I started in a wheelchair, and now I’m walking around on a horse ranch today and feeling compassion from a horse. I never thought that I would be able to do this.
I don’t know how long this treatment is going to work. So, I’m afraid I’m going to take on things and let people down because what if my body won’t hold up.
My pain story is just one part of me. But it’s been in the way of the other stories that I want to tell and things I want to do — how I want to serve people and help bring healing to people who are suffering.
Listen to Pintor’s story: