Child Arthritic

At first, I thought about titling this entry "What if you were born like Benjamin Button, but your joints just kept crumbling?"

That seemed a little too morbid and too sympathy-seeking...
But also, I'm kind of feeling a little morbid at the moment.

A long process to get diagnosed

My diagnosis story may ring bells for a number of you because A) it took a long time for me to be diagnosed with psoriasis, B) there was no commonly known correlation whatsoever between skin rashes and joint damage... psoriatic arthritis was not widely known - even among doctors, and C) the all-too-common and ignorantly biting statement, "You are too young to have arthritis," expresses the general belief accepted by society that arthritis is just something that happens in the final seasons of one's life (after decades of wear, tear, and memories).

Misdiagnoses

From infancy I had psoriasis, but my mom believed that it was just a bad case of diaper rash. As a toddler, she was perplexed by the bleeding and cracked scaly skin that covered my hands and feet. For years my mom took me from pediatrician to dermatologist and received diagnoses from athlete's foot to hand, foot, mouth disease. Unfortunately, no diagnosis or cream cleared my skin. I remember being sent home from school because, between music and lunch, the palms of my hands would suddenly be covered in erupting pustules or because the Saran wrap my mother used to keep the cream on my feet would split and slice a bleeding fissure between my toes during PE.

Finally getting a psoriasis diagnosis

I was in senior high school when we finally received the accurate diagnosis of psoriasis. We went out-of-network to the UNC School of Dermatology in a desperate attempt to find some answers and they sent us to the compound pharmacy to pick up a crazy concoction of horrible-smelling tar and petroleum. It was a mother-loving miracle. My skin had never been so clear.

I went on with life with a few hiccups - a wrist surgery at 13 to remove a “very unusual” ganglion cyst that prevented me from moving my left wrist, an ACL replacement at 16, and a bunionette correction at 18. It wasn’t until I was a freshman in college that the symptoms started to become inexorable.

Increasing pain

My feet hurt so badly that I began counting how many steps it would take to get from one building to another. After memorizing how many steps each path took, the process evolved into distracting myself by calculating the percentage of distance left on each trek. In the mornings and late evenings, I would lean against the walls as I walked from my room to the bathroom. Eventually, the stiffness extended to the daytime as well. I would cross my legs during class and accidentally tap the back of my heel against the chair. The pain would course through my body like lightning leaving me nauseous and reverberating like a struck metal pipe.

Around that time my psoriasis flared up. I traveled back to UNC for an appointment and, as I was making my way to the checkout desk (leaning against the wall… of course), one of the students meekly and curiously asked if I had psoriatic arthritis. The rest is history.

Reflecting on a psoriatic arthritis diagnosis

As it turns out, I’ve probably had psoriatic arthritis for most of my life. Before elementary school, I began complaining to my mom about pain, but she believed it was just growing pains, later just soreness from sports.

I've had 6 orthopedic surgeries, undergone countless medication regimens (some total failures and others moderately successful), spent about 9 months in a wheelchair, and I’m scheduled for a second knee surgery this afternoon.

This time, I did not tear my ACL as a 16-year-old softball catcher skiing down a refreezing mountain. Instead, I have a bucket handle tear of the meniscus, a failing ACL graft, and a torn LCL because I tried to use stairs without a handrail. This time, I’m in a wheelchair because my hands, wrists, and “good” knee are too weak to use crutches.

What will the future hold?

I am left considering, "If this is what 31 looks like, what will my mobility look like when I'm 50? If this is what 'managed with medication' for almost 15 years looks like, what will I look like in another 15? How will I transfer from chair to chair in 10-20 years when I need a knee replacement if my joints continue to deteriorate? How many more mountains will I be able to climb? How many more babies will I be able to pick up before my wrists pose too great a risk? I'm on my fifth or sixth biologic (after trying the NSAIDs, methotrexate, and occasional steroid), this one is either doing worse than the last or I'm in one hell of a flare (or both, who knows?). Will we find a medical cocktail that actually works for a significant length of time? With all these heavy-duty meds for decades, will my kidneys or liver give out before the joints? Your guess is as good as mine."

The lack of control and the unknown future is pretty terrifying. Plus, having a disability puts a whole lot of pressure on a spouse.

Thanks for the community and the support. It does help (a little) to know that I'm not alone in all of this. But, it still sucks.