One Painful Day That’s Lasted 8 years

A couple of years back, I wrote a story for inflammatoryboweldisease.net. It starts off, “Every painful step is a painful reminder that I still have Crohn’s disease.”

The piece detailed the day I woke up with a level of pain I’d never experienced before and rarely has gone away since. It is, literally, one painful day lasting eight-long years.

The first signs of psoriatic arthritis

My battle with symptoms from psoriatic arthritis began way back in the 90s. But they never presented consistently enough to pinpoint the cause. Back in the early 90s, I was the sick kid that doctors couldn’t figure out.

And as some of you may have experienced, when doctors get frustrated with your case, you become to blame. And after they’re done blaming your issues on being a teenage girl, they may shift blame to the parent who takes you to see them (your mom).

The frustrating symptoms of PsA

During my sophomore year of high school, I could barely eat and was continuously running to the nearest bathroom. I had thick patches of cracking skin around my ears, nose, and eyebrows, and my raw scalp created snowfalls. As if that wasn’t bad enough, my knees suddenly gave out.

The pain radiated out from my knee caps and felt like a hot knife was piercing them each time I took a step. As fast and random as the pain would come on, it would dissipate. Sometimes there would be swelling, and sometimes not. My pediatrician sent me to an Ortho who then pawned me off to physical therapy.

Reader, it was bad. My labs showed anemia, a mega elevated CRP (an inflammatory marker), and a high white count. All signs of inflammatory illnesses.

The ongoing diagnosis story

By the time my senior year of college rolled around, I was a hot mess. Once again I couldn’t keep nutrition in, my joints were on fire and my knees were acting up. I returned to campus from winter break with my first CT-Scan under my belt and a knee brace.

In May 2005, I graduated and moved back to Florida. My Crohn’s disease diagnosis came a few months later. After receiving the diagnosis, I didn't receive treatment. Only when the perfect storm occurred with my conditions was I forced to find doctors who could help me. By then, unfortunately, the damage was done.

That’s why during that fateful morning, in 2012, I didn’t realize how deep in trouble I truly had fallen.

A terrible flare and a terrible day

I don’t remember what woke me. But when I tried to stand, I crumbled to the floor and crawled to the bathroom. The feeling, like shards of glass embedded in the soles of my feet. My fingers were stiff, puffy, and throbbing, too.

I gripped the wall and dragged myself back to bed and willed myself to go back to sleep. After waiting a few hours, I was petrified to set my feet back on the floor.

My job was eliminated about a month after this flareup. My boss told me I was a liability to the team. I was working as a contractor by then and had zero legal protections. I had to make the excruciating decision to short sell my house, sell everything I owned and moved back in with my parents just before turning 31.

Piecing together the psoriatic clues

The pain I mentally and physically experienced in those early days is still indescribable. While applying for disability in 2012, I reviewed records of my former pediatric GI office sent to my adult GI office. There were labs, procedures, and imaging records.

Many clues missed, including an autoimmune thyroid disease called Hashimoto’s. There was a pattern: GI symptoms, joint or lower back pain, and skin issues. They almost always appeared together.

A different diagnosis story

Psoriatic arthritis isn’t something that jumps out at doctors. There isn’t an antibody test like rheumatoid arthritis. My psoriasis outbreaks were tricky and easily overlooked. That’s why it still took a few more years of steady monitoring from my rheumatologist before she was confident enough to deem this psoriatic and not enteropathic (blame falls on IBD) arthritis.

Some days, it is hard not to wonder if I would be pain-free today had I received a proper diagnosis years ago.

Helping prevent others from experiencing what I’ve gone through is the driving force behind why I became involved in advocacy and share my story. How did you receive your psoriatic arthritis diagnosis?