Welcome to this week’s Spoonie Spotlight. Today I’m featuring Cory! Spoonie Spotlight is my way to use my platform to share the stories of others living with arthritis or an arthritis-related condition. The point is to share the realities of living with arthritis and to make others’ voices heard. (New posts every 2 weeks.) If you would like to participate, fill out the form!
What’s your diagnosis?
JRA / RA
When were you diagnosed?
How long have you had symptoms?
20 years now
Have you been limited in any way from your illness? If so, how?
Yes. My hands have been severely weakened & always in pain.
What’s your story?
I was diagnosed at the age of 7 with JRA. The problem with my diagnosis is that there has never been scientific data to really back up the diagnosis making it 100%. I don’t swell, my blood work is clear, my x-rays, MRIs, ultrasounds & EMGs show nothing, but I’m still in pain & still sore every day.
Growing up my pain jumped around. Starting in my foot & hoping to my knee, wrist, elbow, shoulder & jaw with pain always on the right. I attended Sick Kids Hospital until I was “too old” & outgrew most of the pain too. For about 10 years I lived mostly pain free with only the occasional flare up.
Two years ago I started having pains in both my hands & wrists & it’s stayed put. I’m always stiff, sore & in pain. I’ve lost muscle mass, strength, grip, & energy. I’ve had to adapt to everything even including the way I open doors. Every day is an ongoing struggle.
How has your illness changed your life?
I’ve lost opportunities, strength, & motivation. I’ve had to adapt & change the way I do any chore in life. Everything has changed.
What are your goals for the future? (Not related to your health)
I want to travel & I want to be employed.
What are your goals for the future? (Health related)
I want to regain strength & help myself find a good balance between pain & living with it.
Do you consider yourself handicapped or disabled? Why or why not?
I try not to, but there are many things I need to say no to these days.
What would you like readers to take from your experience?
My case is one in a state of limbo. I’m not healthy enough to say I don’t have RA, but I’m too healthy in that I don’t show enough signs for aggressive treatments. I want others to know this exists & I hope I’m not alone. I also would LOVE for people to reach out for whatever reason if they find they connect with this. xoxo
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