[MUSIC PLAYING] HOLLY FRICK: AS is called an invisible disease. You'll see somebody who looks perfectly fine. But they're complaining. They seem like they're lazy because they have fatigue. But actually, what's going on in their body isn't recognized by your GP and the people that you normally see.

[MUSIC PLAYING] Ankylosing spondylitis is a rare genetic disease. It has no cure. It's a type of arthritis. And it causes the body in the spine where cartilage should be but erodes away, your body grows new bone. And when you grow bone on top of bone, you become fused. And it's very painful.

I struggled for a while having AS before getting the diagnosis.

The amount of pain that I was in, it kept me in bed for a year. I wasn't able even to walk out here to the kitchen and take care of my family. And I didn't know what was going on. I didn't know if it was in my head. I didn't know if it was old injuries. I didn't know what was happening to my body.

I sleep approximately 11 to 13 hours. I don't like sleeping in. I don't like to be perceived as lazy. But you don't want to go to sleep because you know you're going to wake up stiff and in pain.

So I'm usually just awake waiting until I can fall asleep. And waking up in the morning, I always feel like, oh, no, I missed half the day. I got to get going. Let's do life.

[MUSIC PLAYING] I was so happy to have a diagnosis. I wasn't confused any longer. I knew that I had a medical term for what was going on. And I love to research. So pulling up anything and everything that I could do for myself made me feel more in control.

I had to slow my whole entire world down. And I had to limit my expectations.

So my world has slowed down to a puppy dog, a kitty cat, homeschooling so that my boys are close.

I go down to the chickens. And I make sure that they have water and pick up their eggs that they laid. And yeah, that's a good start to a day, isn't it?

I like to buy lots of gadgets to try to help my pain levels go down. I love my Epsom salt baths. So I take a hot bath with Epsom salts, resting as much as I can, anything to keep the inflammation down.

Eating well and also exercising is very important. It's very important for us to stretch.

I'm on a lot of pain medication, of course, because it's such a painful disease. And I also wear a opium patch. And so this is a seven-day patch that hourly seeps opium into my system so that I don't have to do the rollercoaster of pain with pills.

Weekly, I take my biologic, which is a shot that I give myself. And that biologic slows the progression down in my body so that that bone won't grow where the cartilage should be.

The support that I get around my house is amazing. My family is so good to me.

I have nature to enjoy right here in my own home. Everything's right here at my feet. My husband's a wonderful provider for me.

My outlook on life and how I enjoy life helps me to live my life. It helps me to stand tall. It helps me to no longer be confused about what's wrong with me and why am I hurting? Instead, it gives me the confidence to say, I'm going to go out there and enjoy life with whatever mechanism I need, whether it be a mobility device, a handicapped sign in my car so I can park closer, whatever it takes. I'm going to get out there and enjoy life. [MUSIC PLAYING]