On being the Lupus Ninja, and an update about Hurricane Florence

I really dislike bringing up the fact that I have lupus because 1) it’s not the most important fact about me; 2) it’s boring to keep mentioning my own chronic illness; 3) it’s not that big a deal. I just know that one day if I get on American Ninja Warrior, though, I’ll have to call myself the Lupus Ninja. <eye roll> I mean, do I need to worry about that? Well the other day I nearly dislocated my shoulder on the playground trying to literally go from one monkey bar to the other—I used to be able to go across the whole set of monkey bars, even skipping rungs…back in third grade—so I guess not. But still. Lupus is my human interest adversity story they’ll want to use.

However, not until Harry had his surgery and I consequently had a stress-induced lupus flare did I realize what I’m really dealing with here, and to me that is an interesting thing to share.

What is lupus pain like? Well it’s not like having a baby (I’ve had three[!]) and it’s not like having a slipped disk (I’ve had one). At its worst, this flare rendered me unable to lift a skillet, open a jar or even a water bottle, and at one point I had to call Noah during the night to lift Harry back into his crib after a feeding because I wasn’t confident I could stand without dropping him.

Oh! And I got pleurisy! Lupus, pleurisy, these all sound like old-timey diseases one would die from in as a Union soldier in an antebellum Civil War hospital. Pleurisy is inflammation of the lining of the lungs, and for me it felt like a constant dull ache radiating from a sharp pinpointed pain under my right shoulder blade, going through to my chest. That was a little scary. But then the doc gave me a stronger, longer steroid dose and it got better.

This flare lasted a few weeks (I’m still having to open water bottles in a weird way because my grip isn’t totally back to normal), the longest and most intense I’ve ever had. For the majority of the time since being diagnosed, I’ve had virtually no pain. So this was a bit shocking and upsetting.

The result, however, has been a commitment to health and nutrition. I will never be the kind of crazy butthole* who goes extreme on either of those topics, but I have become the kind of person who is readjusting her expectations about food and I’ve also joined the YWCA for yoga and swimming (once the swim center reopens; it’s been closed because of flood damage, ironically predating Hurricane Florence).

*A couple weeks ago the kids and I were at my parents’ house for an after school hangout and Oliver saw some extreme sport commercial on TV. He said, “That looks like fun.” and Ethan said, “Yeah if you’re a crazy butthole.” Of course I immediately admonished Ethan but I’ve also been laughing to myself about it ever since and using the term “crazy butthole” as often as possible in adult conversation and texting. I don’t know, guys. No matter how old I get, in spite of all my education—one might even say erudition—I will always have a weakness for butt jokes.

Speaking of Hurricane Florence, we were largely unaffected. The creek behind our neighborhood flooded substantially and a small sinkhole appeared near the storm drain at the bottom of our street, but the worst was what happened to our beloved Oriental. One photo I saw on Instagram featured our favorite coffee/ice cream shop, The Bean, nearly submerged. The waterfront road was destroyed. So that’s a real shame. Our (aka my friend Lisa’s) river house was spared thanks to being on high ground.

For reference, the pictures of my parents and the kids were taken inside The Bean this summer, which is the circled blue building. You can see the construction and the sidewalk railing along the wharf in the background of the pic with my parents. And the arrow is pointing to the dragon that was in the little lagoon picture from this summer. As you can see, the road and sidewalks were completely underwater. There’s no dry land or even docks left above water between the lagoon and the wharf.