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one of the last sandal days
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storm coming in
First nor’easter of the year is hitting this weekend. Got me thinking again about the Met Office’s shipping forecast. I’d love an equivalent for my health, extreme functional compression to communicate my daily lupus symptom status. Right now I’m going to be moving a ring between my pinkie and the first knuckle of my middle finger. Pinkie means “decent or better”. Middle finger is everything else.
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Late 30s going on 70
It finally feels like fall here, it was about 48F when I took the kids to school and daycare. Enjoyed getting dressed for that sort of weather, not so much sunscreen and sweat. And my ears don’t hurt in the wind anymore thanks to the hydroxychloroquine, turns out that was Raynaud’s. But the joint pain is much more obvious with the cold. That might improve over time, but this is my now.
Late-30s going on 70. I’ve been taking a lot of comfort in Ursula Le Guin’s writing, as usual, but her writing on aging and the fallibility of the body is particularly resonant.
The pain in my feet, knees, and hips was enough the other day that it suddenly dawned on me. Do I need a cane? Maybe I need a cane. Let’s get a cane. I found a secondhand one online from some estate sale in California and sawed it down to size. I won’t need it often, but there’s something about having something that I picked, that someone else previously found useful, that I modified just for me, that makes life-changing pain a little more visible when it’s not that obvious, pain that I can’t explain to acquaintances, friends, strangers, without bursting in to tears. Having something to hold, to lean on, to signify “hey, maybe let me take that bus seat if that’s alright”, is really comforting.
I’m hoping that visual signifiers will also help with the kids. That’s the hardest, most sorrowful part. Reminding him that I have “inside boo-boos” when he wants to play bath monsters, “I know mommy”, running to ask daddy instead. Her looking at me carefully with her big blue eyes saying “oo okayee?” when I wince after she jumps in to my lap. Yes, I’m okay my love. I’m not, but I’m okay enough.
My dad has dealt with chronic pain for years. I had no idea how much it drains the soul. I’m sorry.
It’s not all bad. Like I said, my ears don’t hurt in the cold now. Though everything else does, how’s that for a tradeoff. I can have dairy again, the lactose intolerance was a part of it all. And my highest and lowest notes are back with zero effort on my part, which was truly a shock.
So many things to be thankful for (insurance, savings, time, Sam, friends, family, neighbors, modern medicine, our walkable neighborhood, a good rheumatologist). And Carole King. How had I not listened to “Tapestry” in full before. What an unbelievable album. I put it on in a particularly low moment after I stumbled across a video of Aretha Franklin singing “(You Make Me Feel Like) A Natural Woman” at the 38th Kennedy Center Honors gala. Every song on there is fantastic, but I was full of tears after the first line of “Beautiful”.
“You got to get up every morning with a smile on your face / and show the world all the love in your heart.”
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One answer, many questions
Another quick update: I’ve been diagnosed definitively with lupus. I’d been toeing that line for a long time, have had symptoms related to it for at least 15 years, but things properly went wrong starting around the middle of last year and a recent biopsy made it definitive.
Anyways, send me all of your hot-weather recommendations for long sleeves and pants that don’t make me feel like a boil-in-a-bag meal. And hats, all the hats. Did Carmen Sandiego have lupus?
(Genuinely, related to the clothing recommendation solicitation: I really appreciate the emails I get about this blog, truly, and I’m sincere when I say “send me x”. But I should say now, I’m not great on quick replies at the moment, haven’t been for some time. It’s hard to find the words. But thank you.)
The first week after diagnosis was the honeymoon phase, relief at knowing. Now I’m in the much lower “what now, what next” phase. The diagnosis road has been very long, and honestly there’s still a long way to go in terms of finding the right cocktail of drugs to keep flare ups and progression at bay. Reading other folks’ stories has been really helpful though, so I’ll try to share it at some point.
If you’ve wondered why the long time between posts, here’s the answer.
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Overheard on 7th
I was walking to the grocery store just now with AB in the carrier. A man bumped me accidentally rushing after a woman about his age, maybe both mid-70s. He grabbed her by the shoulder and turned her to him.
“Where are you going?!”
Silence.
“You want to go home?”
She nods.
Gently turning her the opposite direction, “But home is this way.”
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A postponed postpartum story
This is a mega-post about our daughter AB’s arrival a little over two months ago, with a bit about BB’s birth three years ago thrown in. I wanted to note some of that at the time but never did.
It’s mostly so I don’t forget, but maybe someone else will find it useful too. Maybe AB in the future if she ever decides to have kids.
This gets a bit in the weeds. If you’d rather not read about things like breastfeeding, IVs, episiotomies, etc, probably best to skip this.
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Balance brushing
I read somewhere that poor balance is heavily tied to memory loss later in life. Wish I could remember where…
Now I stand on one foot while brushing my teeth. The right foot and right side of my mouth for the first minute timed by my electric toothbrush, and the left foot / side of mouth for the second minute. It’s more challenging than you might think! Who knows if it would help long term, at least it makes B laugh.
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4+ month update
It’s been a little over four months since B arrived. These are some of my experiences or things I’ve learned so far, plucked at random.
I’d say that the books, conversations, and classes prepared me pretty decently in theory, but the physical and emotional reality is almost impossible to prepare for. Being a parent has been much more visceral than I expected.
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“we will be making marmalade”
Read Letting go: my battle to help my parents die a good death by Kate Clanchy in The Guardian, published 6 April.
They don’t know if she will ever come off [the ventilator], but if she does, they say, she will live a very limited life in a nursing home. “We must hope she dies,” says my dad when I put down the phone. My parents are devout atheists: they believe there is no God and therefore we must live well. So do I. We pray.
This is probably one of the more moving things I’ve read in the past year. I came across it via Kate’s Twitter profile where she often shares poetry by her students.
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Identity wrangling
Cupping the water in Spicey Gill coming down from Ilkley Moor. Photo taken a year ago today.
“You are not your emotions.” Well you are, but you are not only your emotions. And you can choose not to be controlled by your emotions.
Life is made up of micro and macro decisions, and their consequences.
I chose to move back to the US, and now I am grappling with the reality of that decision, amongst other things. It has made life easier in some respects, and harder in others. Do I regret it? No. Will we be here forever? Magic eight ball says 🎱 “Concentrate and ask again”.