About sashafeather

Queer, disabled, white, geeky. Interested in social justice, tv, movies. I have a greyhound dog.

Nerve block #3

My nerve pain was pretty terrible this last week.  I had the attention span for playing candy crush and listening to podcasts.  I still ran errands and did essential tasks, but my mood was bad and I was exhausted.  I took a lot of naps.

I went in today for Nerve Block #3.  It went well.  I’m planning to get these every 3 months.  The doctor said she’d do it more often if need be.  I told her the biggest difference I’ve noticed is that I’m able to read again.  I went from reading only comics and articles in 2016 to reading seven novels so far in 2017.  (I still read comics and articles, but now can read novels again too. I just checked my Goodreads account; and I’ve read 9 novels as of today).

The doctor had a resident with her again, and she explained everything she was doing. I think the combination of listening to her explain the details, and the fact that I had a vasovagal reaction last time, made me a little nervous. But I did OK and only had to lay there for a couple of minutes before I could get up and go. The whole thing was fast and pretty easy. I felt sort of euphoric; my pain lowered dramatically and it was easier to breathe.  Since my pain is often in my nose and mouth, it can be hard to take a full breath, and albuterol doesn’t always help.

The resident said that my case was the most interesting one of the day.

I am waiting for the headache to come, the one that follows after the nerve block and lasts all night. My mouth hurts but so far, no terrible headache. I think it’s just on the edge though. I bought a bunch of popsicles and plan to keep eating them.

Getting sick, getting poor

You cut back on your work hours because you’re sick. Your income drops, but it’s worth it for the extra rest. You know you aren’t getting better; you won’t ever get better.

You cut back on expenses little by little. You already don’t much like drinking alcohol or coffee, so the articles advising you to cut back on lattes or cocktails are lost on you.

You already buy most of your clothes from the thrift store. You stop using the coin-op dryer and hang your clothes on the line to air dry. It makes your shoulder hurt but saves you a few bucks in quarters. You dilute the laundry detergent with a little bit of water.

You share your Netflix and Hulu accounts. You stop paying for internet sites that you used to throw a few bucks at when you liked their service, like Dreamwidth and Flickr. They have free versions available.

You ask your parents for money, again, knowing how fortunate you are that they can help, and that you have a good relationship with them, and that they don’t hold back financial support due to your queerness.

You run up your credit card buying gas. You think about taking the bus more, but the stops and starts make you nauseous. That’s not a new thing, not a chronic illness thing. The school bus made you nauseous as a kid. But it does seem worse now.

You stop working for a while because you get laid off, and anyways you need to take a break: you’re really sick. Sicker than you want to admit to anyone, even yourself. A while becomes a longer while.

Your main entertainment is the dog park (Permit: $32 / year), Netflix ($10/month), and reading fanfic and the internet (mostly free – wireless internet $21 for your share; electric bill $16 for your share). You use the library more and more for comics and the occasional movie.

You reluctantly go on food stamps. You notice yourself eating the heel of the loaf of bread, which you used to give to the dog because it was “all crust”.

You ask your friends for help paying your medical bills and other expenses. They come through, and you think about how fortunate you are.

You feel guilty.

You learn about anti-capitalism. You feel less guilty.

You learn about the emotional costs and structural sources of poverty. You begin to feel empowered.

You read about the Mortgage Interest Deduction in the New York Times Magazine. You get angry, and anger is fuel.

You stop and get a fucking ice cream cone.

Accessibility and Gaming, part 1

I have been getting more into gaming lately. It’s the best thing to do when I’m especially ill because it distracts me from feeling terrible, and it’s just plain fun. Naturally, I think about accessibility in gaming.

I usually play with the sound off because I’m not super into the music on games. When on my PC, I’ll listen to my own music while playing. I have arthritis and some dexterity-driven games are not for me. Very stressful games aren’t for me either. The games below, I played on PC and purchased through Steam.

Stardew Valley: This is a wonderful, low-key game that involves farming, fishing, mining, and scavenging, and occasionally interacting with villagers. You can play at your own pace and sound is not required. I use my mouse left-handed*, and this game is designed for a Right handed mouse. Although I found a page for switching keyboard commands, I couldn’t find a way to switch the mouse buttons. I ended up leaving the mouse button commands alone and still playing Left handed, and switching the keyboard commands to accommodate my right hand being on the keyboard. Fishing is difficult and requires dexterity. However, there’s a mod that makes all fishing easy. I downloaded and installed this mod with the help of some internet tutorials. I played this game a lot and it was very relaxing.

Undertale: I gave up on this game mostly because it requires high dexterity. I admit that the art wasn’t really my style either.

Never Alone: I gave this a try and it was rather stressful, as it involves a lot of running away from polar bears and such. The game play is also sometimes difficult and requires dexterity, and again I was using left handed mouse which didn’t seem natural for the default controls. It’s very beautiful and I might try again someday, but my favorite parts were the “cultural insights” (Northern indigenous people talking about their cultures) which I could probably just watch on YouTube.

*I am not technically left-handed; but I have pain in my right shoulder so made this switch years ago. These days my left hand is my “good hand”.

post is to be continued as I have more games to write about!

Nerve block round 2

Today I went in for an appointment to repeat my nerve block.  The doctor and medical staff were all lovely.  But I arrived at about 2:35 and didn’t leave until 5 pm for a short appointment.  I was a bit early but got into a room right away.  Did the intake paperwork and questions.  Then sat to wait, and wait, and wait.  I tried to read my book but felt too tired.  I put my head on my hand, leaned on the desk, and fell asleep.

The very kind medical assistant came back in an apologized, and offered me hot chocolate or coffee, which I accepted.  Then I saw the doctor.  She thanked me for waiting and we proceeded.

I had a vasovagal reaction to the injection.  This means your blood pressure drops, you feel queasy and hot, and you better not stand up because you could faint or throw up.  Faiting is mainly a concern because you could hit your head or otherwise injure yourself.  This has happened to me a few times before, including once when I gave blood.  They lowered the table flat, gave me some cold washcloths, and made me lie still for an hour, monitoring my blood pressure and heart rate.  Even after I was feeling better, my heart rate refused to rise until I got up and walked around with the nurse.  By this time it was nearly 5 pm and my doctor had gone home.

The doctor asked if I’d had enough to eat today.  I said, probably not.  In part I had not planned to sit in the waiting room for an hour; I’d expected to be in and out.  Luckily I had a granola bar, some hard candy, and a water bottle in my bag.

If this goes like last time, I expect to get a bad headache tonight, so I bought popsicles and made sure my ice packs are in the freezer.

Health care can take a lot of time and be a lot of work.

Solstice Goose

Yesterday as I was driving to the Humane Society for my volunteer shift, I saw a cop car pulled over on the bridge over the highway. I glanced over to see two officers with their arms spread wide, making that classic herding gesture. In between them was a goose. Not a common Canada goose, but a light brown and white, beautiful goose. I laughed aloud and figured they’d be going to the same place as me. When animal control or the police pick up strays, they bring them to the humane society.

A few minutes after I’d started my shift, I saw one of the officers walk in. I was the only person sitting up front at that moment so I asked if I could help him.

“Yeah, I have a… duck? Goose?” he said. “It’s in the back of my vehicle.”  I imagine this was one of the stranger things this officer had done.

I went and got someone and it turns out the goose was a domestic, barnyard goose that had gone astray. She seemed quite calm. How she ended up on the bridge over the highway is a complete mystery. Now she is safely ensconced in the barn at the humane society. After a stray hold period she will be up for adoption.

 

 

 

 

Small activism for people with limited energy or resources

What can we do, as chronically ill people? We are often not people who can plan and lead marches. We generally cannot work long hours. Many of us have trouble with phone calls due to anxiety. Many of us are poor and cannot donate or purchase supplies.

Here’s what we can do.
Link sharing of important information, research and fact-checking.
Emotional labor, such as telling people we care for them, leaving supportive comments, linking to cute animal pictures and music.
Listening to people’s troubles. Using Skype and calling our friends. Sometimes you understand something so much better when you describe it to someone else; you can think through a problem when you talk to someone.
Sending packages or notes in the mail.
Producing fanfic, fanworks, art, etc. Journaling. Creating. Letting our voices be heard. Reminding the world that we exist.
Wearing buttons– making ourselves and our positions visible to the world.
Starting conversations. Being allies as best we can.
Sharing what resources and skills we have. For instance cooking, proof reading, pet sitting.
Taking care of ourselves and each other, because survival is essential. Reminding others to do self-care. Affix your own oxygen mask before assisting others.

More from Susan Sontag

from “Illness as Metaphor”, 1977, p. 85

“But how to be morally severe in the late twentieth century?  How, when there is so much to be severe about; when we have a sense of evil but no longer the religious or philosophical language to talk about evil.  Trying to comprehend ‘radical’ or ‘absolute’ evil, we search for adequate metaphors.”

See again, the use of “crazy” metaphors to describe evil people and evil acts.