It Has a Name: PsA and AS
As a child, I was unable to walk for a time due to hip, SI joint pain, pain in the lower spine. I would combat crawl vs enduring the pain as I stood or walked. I just tried to keep going in spite of it all.
As a teen, it was gut issues, costochondritis, hip tendinitis. Why am I so exhausted? I keep going in spite of it all. As an adult, why is this all getting worse, I’ve seen so many doctors, had exams, and Xrays- all normal.
"I’m just out of shape" but I spend 6 days a week in the gym. Exhausted, pain, stiffness, no answers, "must be in my head". I keep going in spite of it all.
The pain is getting worse
Middle-aged- this is so much worse, it’s so hard to turn in bed, so stiff in the morning, I can barely get up. I allow myself 3 hours at least to get up in the morning. I can barely move- I keep going despite it all until the day I can’t.
I can’t get up no matter how hard I try, I can no longer stand the horrific pain. I’ve had it long ago, have seen specialists, even spent 3 weeks at Mayo Clinic without clear answers or treatments that didn't help at all.
My husband who’s known me for 30 years but married only 1, at the time says, "This is not you, there are answers, we must find them."
Running out of money and energy
I cannot spend more money on diagnostics and procedures and specialists. That just torturing me and uses what little energy I have.
My husband said, "You don’t have to, we will." After an unusual couple of specialists, a podiatrist, then a rheumatologist, after 2 rounds of bloodwork, 3 rounds of X-rays, and ultrasounds, I have my answers- PsA, AS.
I don’t trust it, how can they find an answer so quickly when I’ve had issues my entire life? I research, I read stories, the puzzle pieces start to form a picture- it’s me, it’s true.
I begin treatment, it makes me so much worse, then after months, another treatment. It doesn’t help.
How will I pay for treatment
Now another treatment. After a week, I get up easier in the morning, I go down the stairs with reciprocal gait in the morning. I think this is helping- amazing.
Then learning my insurance will not cover the one medication I’ve been waiting my entire life for.
A doctor gives me samples, the drug company will help me with 3 month supply- then what? I don’t know.
I’ve got a long road ahead of trying to strengthen the body that PsA and AS have destroyed.
But, for the first time in about 15 years, I have hope and that will keep me going, in spite of it all.
Do you use the word disability to describe your AS?