Head, Shoulder, Knees and Toes

I recently babysat a preschooler, and while we were playing and dancing to my age-appropriate playlist, the song “Head, Shoulders, Knees and Toes” came on. As I ran after the three-year-old, I realized the song was made for me and my psoriatic arthritis. If you don’t know the song, the lyrics go like this:

Head, shoulders, knees and toes, knees and toes.
Head, shoulders, knees and toes, knees and toes.
Eyes and ears and mouth and nose.
Head, shoulders, knees and toes, knees and toes.

So sorry! Good luck trying to get that out of your head.

Head

In 2012, I had a really bad flare. It was the first time I had to call in extra help to run simple errands. My arthritis was so severe, that I couldn’t even turn my head. There was no way I could drive because I couldn’t even turn my head to back out of my driveway. To this day, for me, one of the first signs of a flare is my stiff neck.

Shoulders

In 2013, my rheumatologist said that along with my active psoriatic arthritis, I also had bursitis in my shoulders and knees. He told me I had to watch repetitive movements, especially in kickboxing class. Yes, I do have psoriatic arthritis, and yes, I kickbox. I am the queen of modifications because I am not giving up this exercise that I enjoy so much and that is a blessing to help me relieve stress.

In one of my favorite classes, we jab our heavy bag 500+ times on the left and then switch to 500+ times on the right. Needless to say, this repetitive motion would leave my shoulders feeling like they were on fire. Instead, I cheat, and I’m okay with that. Again, queen of modifications. I jab 50-100 times on the left, then switch to the right, and back and forth until I need to take a break. I’m still moving, and that’s the most important thing for me.

Knees

When I am in a flare, my knees swell right up. Nothing makes them hurt more than the humidity in Michigan summers. With an upstairs bedroom and home office, I try to limit the number of times each day I have to go up and down the stairs.

Toes

Over the past ten years or so, I’ve come to notice that my toes are becoming slightly deformed from psoriatic arthritis damage. The damage isn’t severe, but it’s enough for me to notice. My doctor said it is important to continue to treat the psoriatic arthritis aggressively to minimize future damage. Thankfully, my biologic medication has been working pretty well the past few years and I hope it continues – fingers (and toes) crossed!

Eyes and Ears

Just having psoriatic arthritis means I am more susceptible to other diseases and conditions. Case in point: I have chronic dry eye, another autoimmune disease that is related to my psoriatic arthritis. My ophthalmologist prescribed steroid eye drops to keep my eye inflammation under control.

And my ears? The National Psoriasis Foundation reports that about 31% of psoriatic arthritis patients also have hearing loss, 23% have balance issues, and 26% have inner ear damage. I got my hearing checked this year and luckily got the all-clear, but my audiologist recommended yearly testing to keep track of any changes that may be so subtle that I don’t notice from day to day.

Mouth

My son often has trouble eating and talking when his psoriatic arthritis is in a flare. That’s because his arthritis affects his jaw and causes him a lot of pain. Even though he’s all grown up now, it still makes me sad when I see psoriatic arthritis taking away his smile.

Nose

Each time I switch immune-suppressing medications, I get nose infections. I have no idea why they culminate in my nostrils, but they do. They are even worse when I have psoriasis there – a double whammy! Thankfully, these nose infections aren’t too bad for me to control, as long as I catch them early and apply antibiotic ointment as prescribed by my dermatologist.

Thanks to my psoriatic arthritis, “Head, Shoulders, Knees and Toes” is a reminder of how this disease has taken over my whole body. But I’m fighting back, and one day, I’m convinced I’ll be in remission. Then I can look back and think of it as a cute preschool song again, or at least just an annoying little earworm I can’t get out of my head.