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RD is my Marathon

I have a new Shero. Fredi Bangwa. Fredi ran the 2021 NYC Marathon and celebrated being the last one to cross the finish line at almost 11 hours. The street sweepers passed her, asking her if she wanted a ride. She was offered a Metro card. Her sisters met her at mile 16 with her walker. She pushed it to the finish line. According to Fredi, who has RA, “If you can’t be first, it’s great to be last.”

Thanksgiving 2010 I trained for and walked my first of 3 half marathons. Training, PT and yoga enabled me to get off of medication for fibromyalgia for the first time in well over 10 years. In fact, I no longer consider FM as a current diagnosis for me. I was more fit than I had been in years. I believed my 50's were going to be my best decade. A fit, active Nana was finding her groove.

In November 2013 I developed hip pain. That Spring I registerred for my 4th half marathon but was barely able to complete a 5K. My niece had to help me get off the ground after I sat down to rest at the finish line. In the summer I had trouble getting back into a boat in the middle of a Very Large lake. My girlfriend, a marathon runner, sat me down and told me I had to do something, NOW! I finally chose to see a Sports Medicine doctor because I knew it would be important to him to have me up and moving soon. I'd never thought of myself as an athlete, but I just new he was the guy to get me back on the trail. Plus, I was afraid the only solution an orthopedist would have was surgery. After looking at my xrays, my SpMed guy told me, "I don't see another half marathon in those hips or back". I told him, "We'll see." An MRI showed a torn labrum and the only solution was a hip replacement. This from my non-surgical guy. He stuck with me pre and post op. Love that guy.

Fair warning - This story does not end with me walking another half marathon. In fact, I haven't walked a fitness event since. But I am in the middle of a marathon.

At age 55 my hip replacement recovery went well at first, but then I developed chronic pain in both hips. And then in many more bilateral joints. Fatigue. It took 3 years and 2 rheumatologists to realize I had developed Rheumatoid Disease. I believe RD was in my future and my surgery simply brought it to the surface. I was 57.

At diagnosis I was convinced treatment would quickly bring relief and I'd be out there walking long distances in a couple months. My 3 year treatment journey has been difficult. I've trialed many medications without much improvement. I've been on steroids continuosly for over 2 years. In August 2020 I stood on the trail at Jenny Lake and told my husband, "Let's come back next year and I will walk the 6K loop around this lake." A year later and just a couple blocks are a long trek. I've had shoulder surgery and repeated dental infections, both probably thanks to my RD meds. My PT feels like a close friend and confidant; we've been together since before the first half marathon. My husband has tuned into the types of aid I need, and what help I will accept. I have 2 Rheumatologists - a local one and one at a major center 1500 miles away. And I'm struggling.

But, here's the deal. My most recent biologic is helping a little. We'll know more in 6 weeks. I am a chronic optimist who is suffering from moments of doubt and fear. At 62 I am not the bouncy Nana I'd plan on being. When I start to improve, I'm afraid to believe it is real. It's so hard to be disappointed. Again. But, still, I do feel a little better than a month ago... Optimism is creeping in...

Fredi. Fredi helps me believe. I celebrate her win. (And worry a little for the pain she msut be experiencing.) I don't have the same emotional need to walk a half marathon. RD is my marathon. I have physical goals that feel as challenging as a marathon. And that's okay. Cuz, “If you can’t be first, it’s great to be last.” These feet just finished the 2010 Seattle Half Marathon.

  1. Hi . After I read the article I, as I am wont to do, started doing a little searching in our archive to see what others have written that say something interesting on topic. I think we have all heard RA and chronic disease in general referred to as a marathon, not a sprint, but I found Kat invoking this and stating "Throughout the course of my long life with JRA I’ve had many different iterations of how I cope. I’ve handled it horribly, and I’ve handled it courageously, with everything in between" (see: I thought this quote and your article sum up that there are no easy answers or one path and there will be missteps, but to keep trying things out and searching for new answers (hello again PT) has nobility. Best, Richard ( Team)

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