My story started 13 years ago. I started having problems with my vision, was treated but not diagnosed until 2009. When I was diagnosed with uveitis, someone ‘dropped the ball’ and neglected to run the hla-b27 test, which would have led to my AS diagnosis back then. Instead, I was having excruciating heel pain. You always blame something else. Wrong shoes, standing all day, working on concrete. Then comes hip pain, again, you lifted wrong, slept wrong, pulled something. For 2 years I had almost constant shoulder pain, debilitating pain that required a 34 year old woman to have her mom help her dress and undress. Again, lifting wrong, pulled muscle. Xrays, cortisone shots, nerve testing, muscle relaxers, anti-inflammatories.
Then the ribs, the pain so bad it feels like someone has put their fist through your chest. Blame it on the bronchitis you just got over, I mean, it can’t be anything major, the doctor isn’t worried, plus she already thinks you’re a hypochondriac.
Then the back pain, I’m only 34, I walk like an 80 year old. Somethings wrong with my body, I know it. Doctor isn’t concerned but I finally demand an MRI. Results, DDD, arthritis, spurs, bulging disc. Doc says “nothing serious, follow up as needed”.
After months of adjustments, muscle therapy, medical massage, Chiro finally says “let’s do bloodwork”. C-reactive protein off the charts, HLA-B27 positive.
Now they are listening, now I’m not just the woman who complains about “weird traveling pain”.
Turns out, all the problems I was having were “flares”. I am just “lucky” enough to have long term flares.
Rheumatologist wants aggressive treatment, MTX, prednisone taper, Humira injections. The meds suck, I feel drained but I’ve got to look at the long term.
I’m losing my hair. My big beautiful mane. The mane I ALWAYS complained about, running down the drain. I always wore it up in a bun, cause it was easy. People would say “your hair is so pretty, why don’t you ever wear it down?” Because it’s soooo thick, and is a pain to do, a bun is just easier. Now I’m wishing I would have taken the time to do it more often while I had it. I’m doing it more now, so I can get a few more of those “your hair is gorgeous” comments while I still can.
I am 35 years old, I feel like an old person, I’m sick. Work is getting harder and harder. My uveitis has never shown improvement and has taken a lot of my vision. Can’t afford disability, prolly wouldn’t be approved anyways.
AS is changing my life, personality, body, appearance, and spirit. Only people with AS or close supporters understand. It’s a long and challenging road, and unfortunately it may not get easier.
But then again, it may. This journey is one with limited answers, but we always hold hope, that it can get better.
I am one of the many faces of AS.
