In her new blog: “Kicking Hoops and Shooting Goals,” MJ Rowan captures the daily irony and flow of living with ankylosing spondylitis (AS) and fibromyalgia — both of which she has. MJ crafts an irresistible story you almost certainly cannot stop reading mid-paragraph.
“It’s an isolating experience,” she writes in a recent post about how the Internet can provide a support community for people with chronic illness, “where our friends and family don’t quite understand (as much as they try), however international strangers can support you in a virtual intimacy that is hard to replicate in our everyday reality.”
MJ blogs from Perth, Australia, where she works in community relations for a non-profit and studies communications and professional writing and publishing, or as MJ says: “professional Facebooking.” She also raises her 14-year-old daughter, who also lives with chronic illness.
Here’s an email interview with MJ, edited for length and clarity:
HealthCentral (HC): You've had a blog in the past, but you began a new one called Kicking Hoops and Shooting Goals. What brought you back to blogging?
MJ: “Kicking Hoops and Shooting Goals” started as a project for university … We were encouraged to write what we know about and, aside from some obscure pop culture references and “The Muppets,” what I know is ankylosing spondylitis. I saw “Kicking Hoops” as an opportunity not only to put pen to paper again, or fingers to keyboard as it were, but also an exercise in accountability in how I deal with my disease, which to this point has not been terribly proactive.
HC: How were you diagnosed with AS?
MJ: Symptoms started after my daughter was born just over 14 years ago and at first were restricted to my knees, (which) would swell to the size of footballs, and some back pain that I had attributed to pregnancy. It was obviously arthritis in my knees, however the numerous doctors I saw were quite ambivalent. Yes, it’s arthritis; there’s no cure; it might go away; it might not.
I ended up getting a referral to a sport medicine doctor that treats elite athletes here in Perth, and maintained mobility by regularly having my joints drained and shots of cortisone. This guy would take out a pint of fluid and administer a shot of cortisone in under two minutes. No ultrasound required.
I walked with a cane and would self-treat at home with anti-inflammatories, heat, and rubs that would make my eyes water. I had accepted this as a new normal and no one seemed willing to investigate further, nor were treatments offered.
A few years later, on a family holiday in Thailand, prepared for with pre-holiday drainage and injection, I had still what was the worst flare of my life...Returning to Australia I asked for a referral to another rheumatologist and that’s how I met Dr. Eugene Ang. He was the first to ask questions and left no stone unturned...Test results showed off-the-chart inflammatory markers and scans revealed unilateral grade 3 sacroiliitis. Boom. AS.
HC: What's something you wish someone had told you right after you were diagnosed?
MJ: You need support and advocacy. I had very little of either and I believe this contributed a state of denial that followed me for years. Aside from a couple of friends that would come and visit to help me look after my daughter on the bad days, I was quite alone in terms of my illness.
I became very adept at hiding my pain, and I still am; you need to know me very well to witness the bad days. I self-medicated with alcohol and maintained this bizarre dual life of drinking and dancing on tables in front of friends, then spending days crying in bed alone.
While getting my diagnosis I attended all appointments and imaging alone. I had no one with me when the verdict of AS was handed down. I since have a friendship that developed over those years and I can’t tell you how much I wish she was in the room with me that day. I feel I would have dealt with it in a much healthier manner.
My rheumatologist picked up on my state of mind and corresponded with my GP (general practitioner) about his concerns and that I was in denial. I have a good team behind me now, but I feel having that support sooner would have changed my life.
HC: How does ankylosing spondylitis impact your other chronic health conditions?
MJ: Chronic health conditions are like Pokémon, your body gets one and it wants to collect them all, and inflammation isn’t just for joints. It’s for eyeballs and lungs and bowels. My most recent addition is fibromyalgia, which is being managed reasonably at the moment. I had a history of anxiety and depression prior to my diagnosis of AS, but it is certainly exacerbated post-AS. You need to care for your mental health just as much as your physical.
HC: In a blog post you talked about a new health scare prompting the start of a bucket list. Why is it important to have dreams with chronic health conditions? And what's at the top if that list?
MJ: Dreams are important for your mental state. You need to have a goal and you need to work towards it or the grief of “what ifs” will take you down. Travel is the highest on my list and I am motivated by experiences. I need to see all the things while I can!
In the last few years I have ticked off Machu Picchu, participated in Loi Krathong (lantern festival) Thailand, seen Madonna perform in Madison Square Garden amongst others. Sunrise over Angkor Wat and a wedding in India have made several appearances on my vision boards over the years. They could be next!