Horses are good company -- The Witcher

Stress, family, health stuff under the cut.
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I did a great puzzle that is all book cover art of American novels. Really an ideal puzzle because a) not actually difficult, b) good subject matter, and c) 1000 pieces means it takes a few days to finish. It would be fun to make more puzzles like this of book covers; you could make ones for various genres.

Yesterday I had a modicum of energy and went into books to prisoners for a few minutes, mostly to talk to a local journalist. That was really fun, I miss going to sessions. I love thinking and talking about activism, queerness, ideas, books.

Watched:
After Midnight, really good one today with Patton Oswalt, Terry Crews, Joe Manganiello, all just having a blast together.
A Court of Fey and Flowers - my first experience watching an 'Actual Play' of table-top roleplaying. I don't always understand what is going on, which is frustrating at times and makes me feel like I'm working too hard cognitively. The solution here is to try and just enjoy it without following every little thing. The actors are amazing and I especially love Aabria, the DM.
Dropout TV is really good, they center respect and kindness in their humor. I'm caught up on Smartypants and Thousandaires, two new shows.

I got a chair massage yesterday which helped my back and shoulders a lot, and in turn my jaw loosened up. Today I mostly stayed in bed and watched TV; lying down seems to be the most comfortable position right now.

I watched:
Kindred - on Hulu. 8-episode adaptation of Octavia E. Butler's book, however the story doesn't end at the end of ep 8, so I hope there will be another season? I enjoyed this a lot but it was tough to watch at times. Mellori Johnson, the actress playing Dana, is amazing.

Leverage: Redemption (latest episode). Free to watch on IMDB.

A Trevor Noah comedy special on Netflix.

I was having intense, somewhat scary ear pain, so I went to see a doc yesterday. She was someone I haven't seen before, but same department-- they fit me in, in other words. She was very good and weirdly easy to talk to (I don't often find new people easy to talk to).

No apparent infection. She thought this is RA inflammation in my jaw and prescribed steroids. Indeed my jaw is frequently (always?) painful but worse lately.

I took them yesterday afternoon and felt better pretty quickly. Of course steroids have their own side effects; I was up all night which is not exactly unusual for me but the steroids probably contributed. While talking to her I realized that I feel like my rheumatologist doesn't take me seriously; he seems to think I'm fine when in reality I am not. So my plan is to push a bit harder when I see him.

My mom also said something that stuck with me. She was talking about my dad having dementia, and that he probably has had it for longer than we realized, because "very intelligent people know how to cover it up." I was like, oh, I do that. I cover up my symptoms without even realizing it, sometimes. This isn't always bad-- one finds creative work-arounds for problems. One finds coping mechanisms. But then it isn't always apparent to others that there even is a problem.

With my dad, it was often subtle things that you can kind of brush off or make excuses for. And it's not like you can do much for dementia anyways but it's nice to let people in and let them know you are struggling so they can try to accommodate you and offer emotional support. I'm definitely my dad's child, this sort of thing is not easy for me.

So a friend of mine (Things with Wings) said the other day that the grumpy warrior is my patron saint. This trope is resonating with me particularly lately. With chronic pain I'm frequently grumpy, but I still want to do the right thing. And I have to keep going, there's no choice.

Examples of this trope are:
MurderBot,
Eliot Spencer,
Bucky Barnes,
Wolverine.

Do you know of other examples?

eta: Sarah Connor

I would really like to make vids, and so I'm going to try and write out the barriers I've experienced, and see if it helps.

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Having a lot of pain right now in my mouth; I'm maybe in a migraine cycle. It helps to contemplate things that are physically enjoyable:

For my feet, I wear fuzzy socks and some wool slippers that jesse_th_k gave me. The dog has very soft ears. My black leather jacket is one of my favorite things to touch, it's buttery soft. I have a very comfy henley shirt that I've been wearing for sleep.

I find it easy to feast my eyes. Tumblr is good for looking at beautiful pictures of landscapes, or art of my favorite characters. I have art and interesting objects in my apartment. Taking photos helps me think about what looks cool and interesting. Some of TV shows I watch are very pretty to look at.

I have free accounts at Spotify and Pandora. I like this playlist (which I named Chill yet inspiring) a lot:
https://open.spotify.com/playlist/7oXtXJuLv8bgdo4MTrV1uP

I also sometimes listen to rain and storm sounds on YouTube.

The Fat Nutritionist says: food you like is food that makes you feel good. So, it's not just about taste, but about how it feels when you chew it, and how you feel afterward, etc. Having pain in my mouth means that cold drinks and frozen food are helpful. Soft foods like yogurt are soothing. Chewing gum is a good distraction sometimes.

I'm not so into smells, but I can think about the smell of cut grass, or of brownies cooking in the oven.

It's also helpful to think about things that are emotionally pleasing, of course:

Reading romantic fanfic, or just thinking about ships I like.

Remembering good times. One time jesse_the_k and bibliofile and I went to Think Galacticon in Chicago, and stayed at the most fancy hotel. It was like something out of James Bond. We were on the top floor and the windows looked out at Lake Michigan.

Thinking about horses and dogs that i have known and loved.

What are some things that come to mind for you?

Excellent thing I read on twitter, in re resolutions for disabled people:

Tawn Christians

@tawn_christians

I WILL:

Measure my health using my own standards of wellness;

Treat my lived experience as expertise;

Rest when needed ;

Ask for what I need;

Be honest about my struggles ;

Celebrate my successes;

Be assertive with my clinicians;

Leave conversations that hurt me.

I realized the other day that trying to do everything myself is prideful. Not pride as opposed to shame (or maybe it is-- maybe feeling ashamed of not being able to do stuff), but pride as opposed to humility. Asking for help is humble.

I am having a hard time with pain today.

eta: I have some big dental expenses (past and future); I'm hoping that having my new crown looked at might address some of my pain. I have a paypal account under sandphin@gmail.com

(Re-posted from twitter- thanks to alice wong and heather ure for starting the discussion)

Some of the health work I do around my chronic pain:

1) making and keeping doctor appointments. Not trivial, as I have a lot of them.
2) Calling to refill prescriptions. I have about 8 that need monthly refills.
3) getting scripts from 2 different pharamacies
4) dealing with insurance
5) Dealing with dentists/hygienists who don't understand that i have chronic pain in my mouth nor how to deal with it
6) buying OTC meds like Icy Hot cream, vitamins; devices like a heating pad and wrist brace.
7) Scheduling time for rest and naps
8) balancing exercise, stretching, and rest; my energy varies from day to day
9) checking accessibility of events. For me an accessible event has: a place to park; comfortable seating; low lights; low noise; a bathroom; a place to refill my water bottle.
10) Keeping certain foods and beverages on hand.
11) Keeping my ice packs stocked up in the freezer.
12) Buying expensive shoes, rotating them, and keeping track of if they are worn out
13) remembering to take all my meds and packing extras when i travel
14) teaching myself to mouse left-handed. Adjusting computer games to left handed mode (due to pain in R shoulder and hand)
15) Buying the lightest weight glasses available and getting them adjusted many, many times, due to facial pain. This is what keeps me away from buying inexpensive glasses online.
16) keeping track of my fingerless gloves (which help my hand pain), my hats (for light sensitivity), and buying loose clothes
17) going to many therapy sessions and a chronic pain group
18) trying every fucking alternative therapy and having each one fail
19) reading articles, blogs, and books about disability
20) doing emotional work around grieving and acceptance of pain
21) dealing with insomnia from pain
22) dealing with depression/anxiety exacerbated by pain
23) managing other people's emotions and expectations; educating others

Every day, I think about working and not working. It is a lot to process. My life would certainly be simpler if I were working; I'd fit in with other people and be able to have conversations with strangers around that annoying question, "What do you do?" I'd have income even though it'd be small from being a part-time state employee. Insurance would simpler. I would be a little more normal and therefore pleasing, or at least not confounding, to the rest of society in this one way.

In my early 20s, I developed facial pain that no one could explain or treat. I got an MRI of my brain to check that it wasn't a tumor. I tried taking various anti-spasmodic drugs. I thought moving around might help, if only to distract me, so I left my desk job.

When I was in my late twenties I worked in a lab, at a job I didn't realize was a toxic environment. I went to a podiatrist to get orthotics, because my feet were hurting so bad that I would sit at home with ice packs on each foot. I developed a constant headache.

I eventually got a job I liked, working on a research study. I had to walk about a mile from my car to my desk. I started getting sicker. One day after I parked my car, I took a short nap right there in the driver's seat. Then I walked to the library, where I knew there was a sofa on the 3rd floor that I could nap on. I set a phone alarm and slept for half an hour. Then I walked the rest of the way to my desk.

At a later job, I closed the door and turned off the lights. I put my heavy winter coat on the floor and laid down on top of it, because I was feeling nauseous. I knew this wasn't normal. I didn't know what to do about it.

I was already getting treated for anxiety, something I'd failed to deal with in graduate school. All of my health problems made the anxiety worse. It was a problem, really a set of major problems, that few could help me deal with. The only people who seemed to offer wisdom were, and are, those in the disability community.

After that job ended, I started feeling a little better. I went to the dog park as usual and talked to my friend Mary, one of the best people I know. She told me that I looked significantly better, and that I should never work a day in my life again.

It was a relief to hear this. I don't want to work, and yet I do. I grew up a farm kid and labor was satisfying, even fun. I'm smart, and felt from a young age that I should use my intelligence to help make the world a better place: I would do scientific research. I would add my pebbles to the mountain of knowledge, to borrow a metaphor from the book Lab Girl.

Capitalism makes many demands of us. I had reached a point where the demands were too dear. I refused.

I'm poor now, but: "There is no shame in a simple life of poverty," Uncle Iroh assures Zuko in Avatar: the Last Airbender.

I don't know what the future will hold. It's hard to think about. But I'm sure that this is the best choice for me, even if I have to remind myself of that fact every day.