Category: JRA

What I battle

Living with JRA (Juvenile Rheumatoid Arthritis) in my adult life is combating the crippling fatigue. Yesterday, I had a hideous day, since I spent my whole day lying down. Now, I’m paying the price my aching joints are refusing to move. 

JRA’s fatigue never dissipates, lurking in the dark crevices, and desiring an opportunity by launching an energy-draining web on me, causing a never-ending tiredness.

There’s my ADD mind longing to write or work on other tasks on my to-do-list. At times, the struggle can be overwhelming, where I desire to release a powerful scream, eradicating my frustration by rattling the windows.

What keeps me sane is focusing on my goals and tasks I want to achieve by reducing the stress and pressure. Like today, I’ll prioritize what I want to accomplish, and figure out which of my household chores needs to get done to keep my joints moving at my pace.

Today’s plan to create Deadman’s Planet episode 2’s premise before working on my household chores. 

Arthritis Awareness Month

I am writing on a subject I deal with every single day of my life, and there is no escaping from it. JRA is better known as Juvenile Rheumatoid Arthritis, and since May is Arthritis Awareness Month, I thought I would write about it.

When I was seven years old, in the mornings I would feel stiff and achy like my joints were frozen in time. My mother dropped me off at school, she noticed I was limping in the mornings and after school I was fine. She questioned me if I hurt my leg, and I said no. Then my mother took me to our family doctor, and the tests revealed the diagnosis of JRA had already begun attacking my knees and ankles. Since this was the early 80’s, there wasn’t much information, support, and hope for my family and me.

After my diagnosis, it seemed that society had written me off, I remembered the adults in my life whispering ‘that I would be in a wheelchair before I was twenty-one.’ I was determined not to let that happened to me, neither were my parents. Thank God for my parents.

One day, I went to the store with my mother, and I was perfectly fine at the beginning of the errand. An hour later, I was sobbing because my aching knees and ankles refuse to bend and the pain radiated throughout my body. My mother finished her errand, taking me home where I could recover. Throughout my childhood, I fought against a crippling disease that was determined to transform me into a living statue by using invisible chains to bind my joints in place.

At the same time, I dealt with a society who still clung to a 50’s attitude towards the disabled that shouldn’t be seen. Another side too, I was a bright, beautiful girl who walked like an elderly woman. Let’s face it; a child should be happy, healthy with a promising future. I wasn’t that child; my reality stunned people by eradicating their illusions about life in the 80’s leaving people petrified.

What I longed most as a child was to be set free from the pain and desiring acceptance. 

That’s what a person with RA or JRA craves for support, understanding, and acceptance to endure the everlasting war. If you know someone that is fighting this awful disease just ask what can I do, or give a hug to show your support.