Health Care, Love, Life Stories, Wellness

I never thought kids could have arthritis – until I became one of them

I wanted to worry about crushing on boys, or when I’d finally be allowed to shave my legs - not whether I’d be able to walk when I wake up.

People tend to associate arthritis with old people and knuckle cracking. I did, too, until the tender age of 12 when I found out my tween body had been riddled with the disease. Juvenile rheumatoid arthritis (JRA) affects about 50,000 children in the United States. Of those 50,000, about 10% have systemic onset JRA, which is the most severe type as it can affect internal organs. JRA is an autoimmune disease, which means the body attacks its own healthy cells. Talk about self-sabotaging behavior!

The first symptoms seemed innocuous enough.

The doctors chalked up a swollen ankle to tendonitis. Then, I noticed one day my pinky was swollen, then my knees, my wrist, my elbows, and nearly every joint in my body.  I was regularly covered from head to toe in a bumpy, red rash. The itch was so bad I couldn’t go to school because I had to sit home with ice packs on my burning skin.  

Then, there were the fevers. They’d come and go, but the day I spiked a 104-degree fever, my parents rushed me to the emergency room.  No one could tell us what was wrong.   I saw a variety of specialists and was eventually diagnosed with systemic onset JRA. 

Chronic illness didn’t exactly benefit my adolescence. I wanted to worry about how to control my frizzy hair or when I’d finally be allowed to shave my legs – not if I’d be able to walk. I still dealt with all the stuff that comes with being a dorky 12-year-old kid, like being excluded by cliques and wondering if I’d be invited to parties. Like any tween, my body was changing.

But in addition to puberty, I had to deal with swollen, painful joints and an itchy, ugly rash I desperately tried to keep covered up. 

[bctt tweet=”I wanted to worry about crushing on boys, or when I’d finally be allowed to shave my legs – not whether I’d be able to walk when I wake up.” username=”wearethetempest”]

The arthritis was unpredictable, meaning my ankle could be fine in the morning and I’d be limping by the afternoon. I could wake up with my knee that I couldn’t put any weight on, only for it to be completely fine the next day.  All of the uncertainty and chronic pain has consistently been a major source of anxiety for me. Not knowing if I’d be able to walk, hold a pencil with my throbbing fingers, or even turn a doorknob filled me with dread on a daily basis.

I was embarrassed for having to wear slings and braces frequently, and occasionally even needing crutches. Did my classmates think I was faking to sit out of gym class? How far would I fall behind in school due to doctor’s appointments? Severe anxiety was essentially the fourth and most consistent symptom of JRA.

It’s been 12 years since my diagnosis and I still haven’t found the right treatment, but my symptoms have changed and even decreased quite significantly.  Unfortunately, treating JRA is basically a matter of trial and error, and I need to stay on a medication for three to six months to see if it’s working. To tell you I’m frustrated would be an understatement. I often feel hopeless, unable to envision a life without pain. Naturally, I became depressed. 

 At one point, I was injecting myself with four syringes of medication daily to control the flare-ups. It was a huge weight on my shoulders to have to be responsible for medicating myself in this way. I couldn’t go anywhere without a cooler of pre-filled syringes. 

A smorgasbord of meds kept away the dangerous fevers temporarily, but more serious action was needed. During college, the flare-ups became so regular that we couldn’t continue to treat them on an as-needed basis. I had developed a rare complication of JRA called macrophage activation syndrome (MAS). 

MAS is also known in oncology as Hemophagocytic Lymphohistiocytosis (HLH). It is a rare, life-threatening disease in which white blood cells that are supposed to attack harmful cells instead attack healthy blood cells, destroying the immune system. 

I remember a doctor explaining we needed to nip it in the bud before I had a fever that took my life. I felt like I was being punished. A life of chronic pain seemed like too much for one person to handle. Now, I was talking to oncologists about finding a donor whose bone marrow could replace mine.  

The bone marrow transplant was successful and the HLH was treated. Thankfully, I no longer suffer from severe flare-ups. I’m still on a journey, however, to find the right treatment for JRA. Even though I’m no longer a juvenile, the diagnosis remains. 

As I type this, my swollen sausage fingers beg me to stop, but I can’t.

I can’t stop moving forward, trying treatment after treatment and hoping eventually I’ll have some relief. I’ve made it so far, and despite the pain, I  know I’m healthier than ever before.