[MUSIC PLAYING]HOLLY FRICK: AS is calledan invisible disease.You'll see somebody who looksperfectly fine.But they're complaining.They seem like they'relazy because they have fatigue.But actually, what's going onin their body isn't recognizedby your GP and the peoplethat you normally see.
[MUSIC PLAYING]Ankylosing spondylitisis a rare genetic disease.It has no cure.It's a type of arthritis.And it causes the bodyin the spine where cartilageshould be but erodes away,your body grows new bone.And when you grow bone on topof bone, you become fused.And it's very painful.
I struggled for a whilehaving AS before gettingthe diagnosis.
The amount of pain that I wasin, it kept me in bedfor a year.I wasn't able even to walk outhere to the kitchenand take care of my family.And I didn't know what was goingon.I didn't know if it wasin my head.I didn't know if it wasold injuries.I didn't know what was happeningto my body.
I sleep approximately 11 to 13hours.I don't like sleeping in.I don't like to be perceivedas lazy.But you don't want to goto sleep because you know you'regoing to wake up stiffand in pain.
So I'm usually just awakewaiting until I can fall asleep.And waking up in the morning,I always feel like, oh, no, Imissed half the day.I got to get going.Let's do life.
[MUSIC PLAYING]I was so happy to havea diagnosis.I wasn't confused any longer.I knew that I had a medical termfor what was going on.And I love to research.So pulling up anythingand everything that I could dofor myself made me feel morein control.
I had to slowmy whole entire world down.And I had to limitmy expectations.
So my world has slowed downto a puppy dog, a kitty cat,homeschooling so that my boysare close.
I go down to the chickens.And I make sure that they havewater and pick up their eggsthat they laid.And yeah, that's a good startto a day, isn't it?
I like to buy lots of gadgetsto try to help my pain levels godown.I love my Epsom salt baths.So I take a hot bath with Epsomsalts, resting as much as I can,anything to keepthe inflammation down.
Eating well and also exercisingis very important.It's very important for usto stretch.
I'm on a lot of pain medication,of course, because it's sucha painful disease.And I also wear a opium patch.And so this is a seven-day patchthat hourly seeps opiuminto my systemso that I don't have to dothe rollercoaster of painwith pills.
Weekly, I take my biologic,which is a shot that I givemyself.And that biologic slowsthe progression down in my bodyso that that bone won't growwhere the cartilage should be.
The support that I getaround my house is amazing.My family is so good to me.
I have nature to enjoy righthere in my own home.Everything's right hereat my feet.My husband'sa wonderful provider for me.
My outlook on life and how Ienjoy life helps me to livemy life.It helps me to stand tall.It helps me to no longer beconfused about what'swrong with meand why am I hurting?Instead, it gives methe confidence to say, I'm goingto go out there and enjoy lifewith whatever mechanism I need,whether it be a mobility device,a handicapped sign in my carso I can park closer,whatever it takes.I'm going to get out thereand enjoy life.[MUSIC PLAYING]
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