–The Bad News: I’m late again on posting. Sorry, readers! In addition to slowly getting better and dragging my carcass through some more difficult days, the family has taken ‘caring is sharing’ to heart and passed around what I am calling the “Castillo Cold.” Elias caught it first, then Isobel, then Anthony, and finally, myself. Anthony and Elias had it the worst of all, with Anthony taking home the prize for Most Grossly Sick, and I miraculously skated by with only one day spent on the couch. It could be because I clocked in all those years as a public school librarian I’ve already been inoculated against the worst mankind has to offer, but I don’t know. What I do know is that even as I was sick on the couch, sniffling my way through a box of tissues, I was still healthier than I was at most points earlier in the summer, which brings my to my Good News: the Humira is working.
–It is slow magic, life-changing magic, health unfurling one petal at a time. This isn’t an overnight fix (though I felt I noticed some benefits right away), this is something that paces itself toward my finish line of health. But that’s the wrong metaphor altogether, as I’m never ‘finished,’ and whatever shape my health will take, I will never be what a normal person would consider ‘healthy’ unless I somehow fall into remission. I don’t hold out hope for that. I have my eye on Better. Better than. Better than now, better than I was, better than awful. I want to keep pace with a better quality of life; keep pace with my kids, with my ideas, with my goddamn dishes. I’m limbered up, I have help, I have you, and I’m doing everything I can to pick up this pace.
–I’m still having a lot of problems with the injector pens. The syringes were much harder and much easier at the same time. I can tell you for sure, though, that Humira hurts a whole lot less than Cimzia. The needles themselves aren’t a big deal (like Trump, they are just a little prick), but the medicines burn like fire.
–(If reading about my experience with injecting makes you nervous because you might start one of them yourself, don’t be; you’ve already experienced far more pain than this. You got this.)
–I have spent a lot of time this week feeling very fortunate that I have access to these life-saving medicines. It is not easy to keep me functional. It is not cheap either. But I am so lucky to even have access to such sophisticated treatments.
–I’m so disheartened by the hate that has permeated social media. As my friend Sunday recently summed it up, life feels like an avalanche of diarrhea lately, and some of it is news we must bear witness to, but some of it is just regurgitated hate from all sides and every orifice. As a SAHM with a debilitating chronic illness, social media has been my lifeline to the world. I am not saying this lightly. I am happy to do what I do because when I need to be connected to like-minded people, or laugh at a cat video, or vent my own particular brand of weird into the world, I can with a touch of my finger. I can get advice, encouragement, ideas, and inspiration. I can share advice, encouragement, ideas and inspiration, which at times feels even more important. But the hate, turned up to 11, hitting me at full-force in the face every time I log on, is overwhelming.
–Isobel said “hell” today, and when I told her not to say “hell” she spelled it out.
–Elias helped me make the mashed potatoes for dinner the other night. ME: This is nutmeg! Can you say “nutmeg?” //ELIAS: No
–My Bernie friend Mike dropped off some ah-may-zing squash from his garden at my house. Just look at them! The biggest one was long enough for him to use as a cane. Elias kept calling it a snake and walked around the kitchen holding it and making hissing sounds. I was most excited to get the kabocha squash, also called a Japanese pumpkin. It’s a favorite of mine, and one you might have had before if you’ve eaten vegetable tempura at a sushi restaurant in the fall. My only problem now is that I have so many ideas of what to do with it I’m having a hard time deciding which one to make. He also gave me a sweet patch and I’m currently looking for the perfect thrift store hat on which to attach it. Earlier this summer Mike also gave me two tomato plants (Roma and Shady Lady), plus two 4×4 raised garden beds. I haven’t been well enough to fill ’em up and get ’em started yet, but I’m hoping to get some fall crops going after school starts. Tl;dr: Mike is a super great guy.
–We went to the fair this year with our friends, and though we didn’t get to do all the things we normally do (my legs were really bothering me, even though I had the cane) we did see a chicken that looked exactly like a Vennoat, the kids won carnival prizes by popping balloons with darts, and a goat literally tried to eat my phone out of my hand while I was taking its photo. Isobel took my phone while we waited for our photo booth photos and took about 300 pictures of Kingston, 50 of Justin, and one of Anthony, Elias and me. She also took this hilarious video.
—I am constantly covered in children, and, if my kids allow, cats, too. My two kids are so territorial of my lap, I can’t imagine what it would be like to have more children. Like, from the moment I get up until I go to bed, if I sit down they are on top of me. I’m genuinely curious how parents of more than two children deal with this issue.
–Speaking of generous friends, Little Big reader and my friend Liz is absolutely amazing. On a whim she bought an Instant Pot for me on Prime Day because she knew I desperately wanted one. How crazy generous is that?! She also had a care package for me that she had been curating for awhile and it arrived shortly later full of crazy goodness like adorable shoes, a Pikachu hat, books on embroidery, and capsule sea creatures, which entertained both my children and my cats greatly. I cooked pot roast for dinner in it last night, and it was so easy I worried I was doing something wrong. I was wrong! It came out beautifully, and I am really impressed with the sear I was able to get on the meat. Fantastic. Isobel and I are particularly excited to make yogurt in it, and Anthony is excited to eat literally anything I make with it. What an amazing gift! Thank you again, Liz. Thank you, thank you!
Snapshot 07.13.16. Recovery is not a straight line, God makes me hit myself, and Ferengi Edition Enterprise.
Fox News anchor advances in lawsuit over name of Hasbro’s toy hamster. File this under WHAT IS EVEN HAPPENING
Michael Page knockout ends with a Pokemon celebration. Yes, that is a Pokeball.
Frank Frazetta, on a natural canvas for any 70s sci-fi art. My husband and I love Frazetta.
The four stages of being at
#RNCinCLE in one picture. See also the Women for Trump event (wow), spotted at the RNC, broken gavel, Made in Bangladesh, opening the Ark of the Covenant, and the RNC experience in general.
lol it looks like a giant toilet. Let’s flush, America!
The greatest Personal Life section of a wikipedia page. Have not yet seen the movie and I’m already half in love with this movie.
The fantastic culinary horrors of the 1970 book ‘Happy Living: A Guide for Brides.’ I can’t look away from Gross American Food.
We are all squish cat. Richard Scary gets fucking dark, yo.
Yanni’s in concert in Philly tonight and tomorrow. And he is not fucking around. I hope this is his Prince tribute album.
Trump tags random man named Scott Walker in thank you tweet. HAAAAAAAAAAAA
The RNC is getting lit. LOLOLOLOL (It’s worth it to watch the whole thing.)
“Toddler Grandma Style,” The Fashion Approach That Will Set You Free. I’m feelin’ it.
Little Broken Heart’s Love Song Playlist. It’s nowhere near Valentine’s but I still listen to our playlists on the regular.
Little Big’s Halloweenish Playlist. Since we’re on the subject of playlists…
Scott’s Most Awesome Halloween Party Ever of 2013. Wherein I am a pregnant Deanna Troi.