sasha_feather: book cover art from the queens thief (queens thief)
I'm just so excited to have read a book this week. Because of my headaches and facial pain, etc, I've had a hard time reading, and it makes me sad becuase I love reading. it's not that I love "having read", I love reading itself, the quiet of it, the way time stretches pleasantly and I can immerse myself into a narrative. Sometimes when I finish a book I'm just so happy with the experience that I'm like, "5 stars! Excellent book!" Then later I think more critically and temper my opinion.

Autobiography of a Face by Lucy Grealy

Some of this is copied from my Goodreads:

Intense, absorbing, and beautifully written. This memoir details the author's experience with childhood cancer in her jaw. Unsurprisingly if you know me at all, I especially enjoyed the horse parts: as a teenager, Grealy works at a couple of stables and finds solace in the horses. I appreciated the meditations about how one's face can be a stand-in for one's self.

Contains: harrowing descriptions of medical procedures including surgeries, radiation and chemo, dental procedures, plastic surgery, hospital stays;
Human and animal death;
Descriptions of bullying.

Several times the author uses "blind" as a pejorative.

The flaw of this book, if there is one, is that the beginning parts are intensely detailed, making you feel as if you are there with Grealy, but then the last third of the book is not very detailed at all. Suddenly she's in college, then grad school, then living in Europe. This is the part where she's getting a lot of reconstructive surgery, none of which she's very happy with. I'm not sure how I feel about this part, or about the book as a whole. Sadly Grealy did not live very long, so couldn't reflect more upon this stage of her life. She died of an overdose.

She seemed to have a very interesting and complex inner life, with a fierce intelligence.

This book does not get into disability politics or culture at all, except perhaps in a few scenes where she finds community with fellow patients in hospitals.
sasha_feather: Uncle Iroh from avatar: the last airbender (Iroh)
Met with my disability attorney today. He's a very nice man, but definitely a talker, so I am trying to determine and remember what is actually important from all of what he said.

Read more... )

That's really all I got and the appointment was about 45 minutes. So, that was confusing!
sasha_feather: cartoon charachter who has Syndrome (i have syndrome)
Excellent thing I read on twitter, in re resolutions for disabled people:

Tawn Christians



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.
sasha_feather: neat looking overcoat (coat)
A few of my tips and tricks for managing chronic pain.

Specific to facial nerve pain:
--I wear the lightest possible glasses
--I do sinus care things, like nasal sprays, eating spicy foods, taking mucinex, using my inhaler.
--Frozen grapes and other frozen fruits act like an ice pack inside the mouth.
--Chewing gum and snacking and drinking cold drinks can help distract me from the pain.
--Lying down and meditating.
--Sometimes I sleep with an ice pack
--Botox was of some usefulness, but what was better:
--A nerve block every three months or so. My doc targets the infraorbital nerve.

Migraines / Light sensitivity:
--I keep the overhead lights off in the apartment, and rely on lamps.
--I wear a hat with a brim when I go out. The hat needs to be big enough on my extra-large head, so it can be a challenge to find a good one.
--Lying in bed and listening to music or podfic with an ice pack on my head or face.

General pain:
--Compression socks. A recent addition to my life and I like them.
--Good quality shoes with lots of arch support.
--I keep an electric heating pad by my bed, and another one by the recliner, so I don't have to unplug and move it around.
--Fingerless gloves, for typing.
--In general, staying warm is helpful, so I will for example wear leggings under my jeans in the winter.
--Various pain creams like Icy Hot, Ted's pain cream, etc.
--The freezer has 2-3 ice packs in it, always. I wrap them up in a pillowcase.
--Loose, comfortable clothes. This can involve cutting tags off of clothes, and cutting notches in the necks of shirts. My favorite kind of shirt is the henley.
--If you can afford it, getting a massage or other alternative medicine can be helpful during really bad pain episodes.
--I play video games to distract myself.
--I rest a lot. For example, do the dishes, then sit down for a few minutes. Take naps.
--I keep a stock of various medications and supplements, though most of these are of limited usefulness for my main problem which is nerve pain. Some of them do help with other kinds of pain. I do keep anti-nausea pills and anti-dirraheal pills handy, because they work.
--Audiobooks and comics are a lot easier to read than traditional books when you have impaired concentration from chronic pain.
--Lower your expectations for yourself. Try not to compare yourself to healthy / non-disabled people.
--Find disability community.
--Ask for help.
sasha_feather: horses grazing on a hill with thunderheads (horses and lightning)
Today I am giving myself credit for managing several complex health problems. I'm giving myself credit for resting, for leaving volunteering tonight when I didn't feel good, and for generally taking care of myself.

I am grateful for my dog, my roommate, and my friends.

I am grateful that i have a recliner to sit in at home, that is comfortable. I also have a comfy bed and warm blankets.

I'm grateful for Netflix.
sasha_feather: the back of furiosa's head (furiosa: back of head)
So, I have phone phobia. I used to consider it mild, but these days it's a real problem. Here is an example.

This afternoon, I finally got myself to make a phone call to refill my Enbrel. This is my main medicine for RA, which I take once a week. I'm out and due to take my next dose on Saturday, so, I know I am running late on this.

I had to leave my apartment and stand outside to make the call, due to cell phone reception. Then I had to wait on hold for about 5 minutes.

When I finally spoke to someone she said that Thursday is the last day they can mail out refrigerated products and it's too late to send it now. So it will get sent on Monday. Can I come pick it up tomorrow?" I ask, as the specialty pharmacy is in town and I have a car.

"Your insurance locks you into the mail order system, and we don't have an option for pick up," she said. Even though this would save them money by not having to pay FedEx. There is also no online re-order system. You have to call. So, fuck me I guess.

I feel bad about myself when stuff like this happens: I feel irresponsible for not calling sooner. I feel like there is something wrong with me that I can't seem to make a simple phone call. But-- if there were an online form, I could do it in 2 seconds. And driving to pick up the med (before they changed the system) was not usually a problem for me unless I was very ill.

The medicine comes in a fairly large, styrofoam shipping box with ice packs and bubble wrap inside. My last one, I returned to a random pharmacy after taking my med out. But I imagine that most people throw all this material away. It's hard for me to imagine how the insurance company is possibly saving money with this system. My own health care is suffering because of it. I *also* don't get the interaction with a pharmacist that I would get if I picked up the med myself.

What a fucked up system.


Apr. 5th, 2018 03:37 pm
sasha_feather: the back of furiosa's head (furiosa: back of head)
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
sasha_feather: the back of furiosa's head (furiosa: back of head)
(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

rest day

Dec. 18th, 2017 11:48 pm
sasha_feather: Max from Dark Angel (Max from Dark Angel)
I felt just terrible this morning. Half-awake, I decided I better email my doctor about my sinus infection. So I got up and did that, and took a shower, and continued to feel awful. I decided to skip volunteering today, and once I made that decision I almost immediately felt better. I reminded myself of one of Jesse's sayings-- even disabled people get sick days.

I read "The Facts of Life," a graphic memoir by Paula Knight, and absolutely loved it. A very thoughtful, wide-ranging book about infertility.

Here is some interesting research:
Controlled temp changes inside ear can prevent migraines
sasha_feather: horses grazing on a hill with thunderheads (horses and lightning)
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.
sasha_feather: the back of furiosa's head (furiosa: back of head)
Korra (Avatar: The Legend of Korra) - has PTSD and was poisoned
Dr. Kerry Weaver (ER) - uses an arm crutch
Jodi Lerner - Marlee Matlin's character on "The L Word" - Deaf
Brian Kinney (Queer as Folk) - testicular cancer
Ben (QaF) - HIV
Justin (QaF) - PTSD, brain damage
Thirteen (House) - Huntington's disease
Arizona Robbins on Grey's Anatomy - above knee amputee
David Fisher, Six Feet Under, PTSD.
Willow (BtVS) - Addiction
Annalise Keating (HtGAWM) - Addiction.
Thomas Barrow (Downton Abbey) - permanent hand injury

Margarita with Straw
The Way He Looks (about a blind gay kid)
Wilby Wonderful (film is partly about a suicidal man)
The Normal Heart (about HIV)
Philadelphia (HIV)
Longtime Companion (HIV)
Jeffrey (HIV)
HOLE (short film) - physical disabilities
Frida (about Frida Kahlo)

The Charioteer, Mary Renault - physcial disabilities
And the Band Played On (HIV)
The Line of Beauty (HIV)
A character in Nimona (physical disability)
Umegat and his partner in The Curse of Chalion (phyiscal disabilities/trauma)
John Granby -Temeraire series (missing hand, prostethic)

Deadpool - disfigured
The Iron Bull (DA:I) - uses a leg brace
Angels in America (HIV)
sasha_feather: the back of furiosa's head (furiosa: back of head)
stuff i did
--Had insomnia last night
--Went to humane society to volunteer. Had a good time.
--Went to dog park
--Bought groceries
--Exhaustion hit me like a brick and I slept for a couple of hours

Now I am still tired, but probably won't be able to sleep.

I forgot to mention earlier that my disability parking tag came in the mail about a week ago. This is a big milestone for me. I'm grateful to have it.

Here is another short film rec: An animated film about young love, "In a Heartbeat". Very sweet. No dialog.
sasha_feather: Retro-style poster of skier on pluto.   (Default)
A 15 minute short film about a disabled gay man. Has captions. Explicit content.

(Film autoplays at link)
sasha_feather: Retro-style poster of skier on pluto.   (Default)
My dad and I went to "Baby Driver" in the theater. This is a mediocre action film directed by Edgar Wright, starring Kevin Spacey and Ansel Elgort. The first part of the film is better than the 2nd part, and features Baby showing off his incredible driving skills as a get-away driver for some bank robbers. He listens to music constantly and the best parts of the movie show how he matches his music to life. The 2nd part of the film got too much into gun violence and ridiculousness. But, there was some interesting disability content. Baby has tinnitus; his foster father is Deaf. They use ASL to communicate and they enjoy music together-- the Deaf character, Joe, feels the vibrations on speakers. Baby can also be viewed as an Autistic character, although I don't think this was intentional on the part of the film makers. There were a few traits that stood out: He has a couple of deep interests and is narrowly gifted (with driving and music). He barely speaks, and when trying to interact with people he sometimes quotes song lyrics and movies. He wears sunglasses most of the time (perhaps to avoid eye contact?). He also cares deeply about the people he loves, and he is not particularly emotionally expressive.
sasha_feather: the back of furiosa's head (furiosa: back of head)
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.
sasha_feather: Black, white, and red image of woman with futuristic helmet (Sci Fi Woman)
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 part 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!
sasha_feather: Retro-style poster of skier on pluto.   (Default)

SuperBabies Don't Cry
by Heather Kirn Lanier

"With my woo-woo belief that the mind could control the body, I’d pushed disability away. I’d done this by subscribing to the belief that disability always had an avoidable cause. I’d believed I could control the body because I could not stomach the truth: that the body is fragile, ephemeral. I had not realized this about myself. I had not realized this about my parents. I did not see our adamant devotion to vitamins and affirmations and organics as fear-based, as an attempt to control the uncontrollable. I also did not see it as political. I saw it as morally good. I was making a SuperHuman. What was wrong with that?"

Content Notes: Pregnancy, Birth, Parenting, Internalized Ableism
sasha_feather: Black, white, and red image of woman with futuristic helmet (Sci Fi Woman)
(I left this as a comment on facebook)
Thinking this through, I think these "standing wheelchairs" are less about the "health" or "independence" of disabled people, and more about making disabled people conform to non-disabled standard, to make us more acceptable to non-disabled society. If a few individuals get benefit from them, OK. But they are not part of the social justice model of disability.

Imagine altering the built and social environments so that wheelchairs are normal. No one comments on them in hostile ways. There are ramps and elevators aplenty. Everything is reachable from wheelchair height, or if not, someone is around who can help reach, or there is assistive tech for helping with that. This would be probably cheaper than providing these "standing wheelchairs" and benefit many more people, including kids, people with fatiguing illnesses, short people, etc.
sasha_feather: white woman in space suit (Astronaut)
Seen on Tumblr, posted by chameleonchild:

"Being chronically ill and having to stay at home a lot doesn’t mean I have more free time. The chronic illness occupies that and the rest of my time."

Bit of an "aha" moment for me.


sasha_feather: Retro-style poster of skier on pluto.   (Default)

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