Spoonie Spotlight is my way to use my platform to share the stories of others living with arthritis or an arthritis-related condition. Since tomorrow is World Arthritis Day, I felt like it would be a good time for me to share my story of living with arthritis. The point of Spoonie Spotlight 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?
Tarsal coalition (an ankle condition), sernogative rheumatoid arthritis, fibromyalgia, and anxiety, but we’re just going to talk about the first two today.
When were you diagnosed?
Tarsal coalition – Fall 2000
Seronegative RA – July 2010
Fibromyalgia – August 2011
How long have you had symptoms?
I’ve been been in pain since fall 2000. At the time, we thought it was just from my tarsal coalition, but looking back, we believe it has been arthritis probably from the beginning.
Have you been limited in any way from your illness? If so, how?
I can’t work full time or go to school full time. I can’t run or exercise other than yoga or walking. I’m constantly in pain.
What’s your story?
I started experiencing pain in fall 2000. Over the course of 9 years, I had 4 surgeries trying to deal with the pain. In 2010, I woke up one morning and couldn’t open my mouth more than 8 mm. A few days later, it turned out that I have advanced joint damage in my jaw, which led to going to the front of the rheumatology waitlist. By the end of the week, I was diagnosed with psoriatic arthritis, and had 58 affected joints. The following August, I was diagnosed with fibromyalgia, as well. It took until January 2013 for me to be on an arthritis treatment that worked. After graduating from college, I taught high school, but I had to quit after one year because my health was so poorly. I took a year off and had knee surgery this past February, and am now working part-time and going to school part-time (studying for my MA in English literature). I currently have IV chemotherapy every four months, pill chemotherapy every week, and take 25 pills a day.
How has your illness changed your life?
Because of it, I can’t live how a normal 24yo does.
What are your goals for the future? (Not related to your health)
I hope to be able to make a living by writing and/or editing in some way. I also want to have a family.
What are your goals for the future? (Health related)
I would love for my daily pain to be in less joints and/or to be less in general.
Do you consider yourself handicapped or disabled? Why or why not?
Yes, I’m disabled. I have permanent health issues that affect every aspect of my life.
What would you like readers to take from your experience?
Someone can look fine but be very, very not fine.