sasha_feather: Road and thunderheads (big sky)
My face is hurting despite the nerve block. I suspect it's allergies / congestion. Weirdly cool and humid today.

What more is there to say about pain? Nothing.

I tried to read "The Charioteer" from the library, but the text was small and not very crisp. Gave up.

Tried to read a Sarah Glidden graphic memoir, but the text was too small. Set it aside for the time being.

Now charging up my Kobo-- fanfic is the way to go!!!
sasha_feather: Big book of Lesbian Horse stories book cover (lesbian horse stories)
1. what are the words you do not have yet? [Or, “for what do you not have words, yet?”]

Those things that are small traumas, "it's not really a trauma but"; like microagressions but not so micro.

More words for coming out: are you coming out to yourself? to others? Are you in the long process of de-brainwashing yourself? Are you still de-brainwashing yourself after years and years? Do you hear a song on the radio, a love song without any gender specified, and assume it's about straight people?

More words like "Hangry", which is a good word; I'm cranky because I'm hungry, I'm cranky because I'm in pain; I'm cranky because....

More words for different kinds of love. Love is love doesn't work for me. I like distinctions and nuance. Love for the world; love for nature; love for friends; love for fandom; sudden and gradual loves; ones that fade and ones that endure. And what are things that help make love happen? What are those things?

Words for surviving, for getting through, for recovering, for dealing with shit that you have to do but can barely get yourself to do.

And more words for physical, chronic pain, which is so boring, and so difficult to describe.
sasha_feather: Retro-style poster of skier on pluto.   (Default)
I went to a rock and mineral show today. My mom asked me what was the coolest thing I saw. I said, the people. Perhaps I should have just planted myself in a chair and watched people go by. Old guys, hipsters, long beards, a kid in a minion costume, a young lady with purple hair using a wheelchair and digging through a box of rocks, men with jewelry and fanny packs, a guy in a dirty shirt busting open geodes. A guy named Karsten whose store is called "Karstones". It felt like a Sci Fi convention, a bit, but just dealers, info tables, and maybe 2-3 demos.

I feel overwhelmingly exhausted today. My knees and ankles hurt. And my face. Iced my knees this evening. Tried to read but couldn't concentrated; watching TV instead.

Oh and I think I left my phone charger in Minnesota UGH.

Grateful for netflix, hulu, and my roommate's cooking, and wool sweaters.
sasha_feather: the back of furiosa's head (furiosa: back of head)
When I was a kid I had a long bus ride. A consequence of living in the country-- the school bus wound around the roads picking up the rural kids. I complained once to my mom that the trip was boring. She told me that if I looked carefully, I'd notice something new every day.

I live a quiet and careful life (to quote Anna Altman in Every Body Goes Haywire, and sometimes it's a boring and lonely life. But I notice something different every day. The change of the seasons and flowers blooming. New dogs at the park.

I had lunch today with [personal profile] jesse_the_k and we watched some animated short films. She wrote about it here.

my thoughts on one of the films )

uh huh

Aug. 24th, 2016 07:25 pm
sasha_feather: the back of furiosa's head (furiosa: back of head)
After my 2nd session of PT, I am still aggravated and thinking of quitting.

While she seemed a bit taken aback that I didn't like the reading, she did manage to roll with it. I said that it was too basic for me and that I have read better books about pain. I said that I did like the part about the body map.

She recommended I try an app in which the user practices Left/Right sorting of body parts; there is some evidence this supports correct functioning of the body map. I explained that I only have a PC, not a smart phone nor tablet. She didn't think this would be a problem.

So I look at the website for the app (which costs about 7 bucks for each body part featured)

And it says it's only available for Android and ioS. (Am I wrong about this? plz correct me if so!)



fuck PT.
sasha_feather: Retro-style poster of skier on pluto.   (Default)
I have PT homework that involves learning about some pain research.

Why Things Hurt - Lorimer Moseley (14 min Tedx Talk)
Understanding Pain in less than 5 minutes (whiteboard by PainAustraila)

Read section one of "Explain Pain" by David Butler and Lorimer Moseley (done)

What I struggle with here is a) the feeling of being talked down to, and b) Feeling like being told that pain is your fault. When in reality we don't actually know that much about it from a scientific perspective.
sasha_feather: sirius black from harry potter films (sirius black)
A memory.

You know when they make you run in elementary school? Sometimes when I ran hard my bottom front teeth would hurt for a little while, in the same nervy way they do now. But now it's most all the time.

Good things:
Seeing Tempest today
Cooler weather
Working in the garden with my roommate
Reading a good comic book -- "O Human Star"
Seeing my dog park friends yesterday


Jul. 2nd, 2015 10:39 pm
sasha_feather: "The heroine's achivement of autonomy and self-actualization was the point of the narrative" (heroine)
I am taking a water Ai Chi class. It is in a warm water pool and the other people in the class are mostly older women. I am by far the youngest person in the class; I don't feel uncomfortable about this though. I like hanging around with older women anyways. It sort of feels like "my mom's friends" age-wise. The movements are very gentle, constantly moving. They focus on deep breathing, range of motion, and balance. It's just my speed, really, because when I've tried things like yoga, it hurts too much to do the movements. This class is challenging, more so than I expected it to be, but doesn't hurt too much. In fact the teacher encourages us not to push through pain, and it's easier to take that advice in a class like this which is aimed at people with mobility issues, than it would be in a standard class.

Sometimes--often-- my internalized ableism tells me that I should be able to do more. After all, I can walk at the dog park, do household chores, drive, etc. But when I'm in this class and focusing on my body, it tunes me in more to how much pain I have and how much I am trying to ignore it all the time. And that takes tons of energy. It's exhausting. Chronic illness reduces your stamina, plus coping with chronic illness takes work.

I have really high standards and expectations for myself, and I should remember to be easier on myself because my life is not exactly easy.
sasha_feather: Retro-style poster of skier on pluto.   (Sherlock glass)
I really liked The Hospital Suite by John Porcellino, a graphic memoir focusing on the author's experiences with illnesses. He has mysterious and severe gut pain, which turns out to be a tumor (non cancerous) requiring surgery. He loses a lot of weight and has trouble gaining it back. Eventually, though natural and alternative medicine, he starts to feel better physically, but then his old problems with anxiety and OCD act up, causing problems with his marriage. There are some intense descriptions in here including self-harm, thoughts of suicide, OCD symptoms, and food issues, which some readers will no doubt want to avoid or approach with caution.

I loved the no-nonsense honesty of this book. Porcellino doesn't have a lot of regard for his doctors, who misdiagnose him and don't show him much compassion. He furthers his studies with Buddhism and finds comfort in koans. Especially stark for me were panels depicting experiences of pain and mental illness, successfully using simple line drawings to show tension and pain.

What I continually admire from graphic memoirists is their ability to be so forthright about their experiences. Body, mind, soul, relationships are laid out on the page for all to see. I wonder if the simple cartoon format works as a distancing mechanism for the author.

Highly recommended.
sasha_feather: neat looking overcoat (coat)
Quoting [profile] firecatstef:

This "spoon shortages explained" poster is good, but I'd prefer a poster that also mentions that any of these activities could randomly develop a spoon leak. [image is below if you don't want to click]
In fact, I am going to generally ponder thinking about disability-related energy shortfalls in terms of liquid rather than discrete entities like spoons. Some liquids evaporate/freeze/boil/expand/contract at different rates depending on conditions. Some liquids interact with their containers. It's easy to spill liquids of the containers aren't handled properly. And so on.

I also liked this image "Understanding Invisible Illness", which shows an iceberg, things above the surface and those below. Taken from FB's "Chronic Illness Cat" page.

image )
sasha_feather: neat looking overcoat (coat)
This has been one of the more stressful few weeks of my life.

I am pretty sick. All-over achy and tired. I took two days off of work (yesterday and today) but not sure how much it helped. I'm afraid that I am under-performing at work at that shit is gonna hit the fan. Well, it won't be the first time that has happened I suppose. Being chronically ill and trying to work and survive on your own is something that there is not a lot of room or support for in society. Right now I am really longing for a different way to live.

This week on the WisCon ConCom list I got really angry, fought with people I respect, and well, made myself sick I guess.

Possibly I am not eating enough protein.

Thank you to everyone who has been supporting me in various ways. Thanks also to everyone who writes about things like:
Tone argument
Gas lighting
Concern Trolling
White woman's tears
Victim blaming
because I've been listening and learning.
sasha_feather: Max from Dark Angel (Max from Dark Angel)
I went to an event today at a park called Disability Pride. I'm friends with one of the organizers but have a weird avoidance relationship right now with another of them. They have a performance stage with loud music, food and booths, and people mill around and chit chat.

I am very tired and was not quite firing on all cylinders. I sat and talked with [personal profile] jesse_the_k and a few others. One woman I met, Kathleen, used to go to WisCon and it turns out she started childcare there. We asked her when this was, and she wasn't sure, maybe the late 80s. She doesn't have kids, but her friends in the dealers' room did, and they were having an issue trying to make money there and find child care. The concom was comprised of people who did not have kids and it apparently hadn't occurred to them to provide child care. Now, 25-ish years later, child-care is an inherent part of the con. (I tried to take a break from WisCon today, but this was a nice thing to talk about, actually).

I got a free massage and tried some yoga (painful). Later I walked the dog briefly and took a nap. I'm having a lot of pain and fatigue.
sasha_feather: cartoon charachter who has Syndrome (i have syndrome)
Source: purpleviolin91 on Tumblr
link to image

100: Fully recovered. Normal activity levels with no symptoms.
90: Normal activity levels with mild symptoms at times.
80: Near normal activity with some symptoms.
70: Able to work full time but with difficult. Mostly mild symptoms.
60: Able to do about 6-7 hours of work a day. Mostly mild to moderate symptoms.
50: Able to do about 4-5 hours a day of work or similar activity at home. Daily rests required. Moderate symptoms on average.
40: Able to leave house every day. Moderate symptoms on average. Able to do about 3-4 hours a day of work or activity like housework, shopping, using computer.
30: Able to leave house several times a week. Moderate to severe symptoms much of the time.
20: Able to leave house once or twice a week. Moderate to severe symptoms. Able to concentrate for 1 hour or less each day. Able to do about 2 hours of work at home, or activity like housework, shopping, using computer.
10: Mostly bedridden. Severe symptoms.
0: Bedridden constantly. Unable to care for self.

Notes from Tumblr:





the best pain scale ive ever seen for chronic pain #Repost from @jennjenn129 with @repostapp #chronicpain #rsd #crps
Helpful activity scale both for talking to practitioners and gauging your own progress.
I’m 30!!!!
Fuck. I thought I was doing better but yeah I’m at a 40. I I’m out much longer I get a migraine or otherwise ill most times :/
This is like… too real. How am I supposed to bullshit myself now??

(end notes)

The note about being no longer able to bullshit oneself is particularly apt. I run about a 40 or 50 on this scale.
sasha_feather: Amelie, white woman with dark hair, smiling cheerfully (Amelie)
I really liked this post by s.e. smith: In Defence of the Urban Car.

I am good at guilting myself about things. The "shoulds" can take the voice of a parent, or the voice of liberal politics, or just a general sense that I should be doing more things during the day. As a person with lots of pain and fatigue, I generally need to rest a lot and I often have low productivity. It also helps me to drive my car rather than walk or ride the bus. The bus makes me feel motion sick and sometimes anxious. Walking leaves me tired out.

Last spring and summer I would walk to the neighborhood dog park (about 4 blocks) quite regularly. Then in mid-summer my knee swelled up. I started driving to the neighboring town's dog park, about 4 miles away. For some reason, in my mind there were two choices: walk to the nearby dog park or drive to the further one.

Then at some point it occurred to me that I could *drive* to the nearby dog park, saving my knee, saving gas and time, etc. I could walk longer at the park because I wouldn't have to walk back up the hill to get home. It seemed a little ridiculous to get in the car to drive the short distance to the park, but on the other hand, it helped me a lot. So now, that is what I do. This decision was about giving myself permission to make my life easier, as a disabled person.

Having a diagnosis of RA did help with this act of "giving myself permission." Social support from others also helps. Sometimes people at the DP (dog park) ask if I live in the neighborhood, etc, and I will say in a self-deprecating way, "Oh yes, I should probably walk here, but it just makes it easier to drive, what with my knee," etc. And nice comments from friends and acquaintances in support do help. There is a nice parking lot there and plenty of other people drive.

Other places this applies in my life: Doing just one load of laundry instead of all of the laundry. Using the clothes dryer instead of hanging clothes on the line (except that the driers don't work very well!) Doing a few dishes instead of all the dishes. Breaking tasks up into small bits over time. Some tips on UnF*ck Your Habitat have helped because that site emphasizes small, manageable tasks, with built-in breaks: 20/10s are 20 minutes of cleaning then a 10 minute break. Also they recommend concentrating on a particular area of cleaning, one that you really notice when you are finished.
sasha_feather: Black, white, and red image of woman with futuristic helmet (Sci Fi Woman)
1. I went to the dog park twice today. My feet and legs hurt badly, but I still was able to walk around in the sun, and had a nice time with my dog. One man I was talking to (a dog park regular) asked if Sorcha ever wags her tail. "I can get her to wag her tail," I said, standing up from the bench. I danced around for a moment, waving my arms around, singing her name and generally making a fool out of myself. She wagged her tail.

1.5 I found my dropped mitten at the dog park. My mom made those mittens! :o

2. I caught up on Elementary and am still enjoying it. It will be nice when the election is over because, no more political ads for a while.

3. I plan to stay in and read fan fic tonight.


Does anyone have advice for hurting feet/ankles/legs etc? I have the pains I'm used to dealing with: my face, head, shoulder, and stomach/gut. These other ones, I'm not used to and they are kinda rough. I am going to PT for the knee, but right now my feet hurt way worse than my knee, and all the walking I'm doing, which I thought would help (it usually does help my knee), isn't actually helping my feet.
sasha_feather: horses grazing on a hill with thunderheads (horses and lightning)
Before I forget! When I went to have my blood drawn in the hospital yesterday, I remarked on how much I liked the lights to the phlebotomist. She said she liked them too because she gets bad headaches and they reduce the glare.

The lights shone upwards onto a piece of white fabric that was stretched out like a baby bouncer. From there it reflected into the two blood-draw bays on either side of the barrier. It was all reflected light that didn't shine directly into anyone's eyes; it was bright but diffuse.



My elbows are sore today! Bonus. I don't feel like I am talking enough lately, and I am pretty upset about my joints hurting, so I am going to be writing more here.


Someone today (my CST) asked me if I had plans for the long weekend. I don't really-- I'm pretty broke. I'll probably just watch Warehouse 13 and go to the dog park, maybe try to get some things crossed off my to-do list. When I told her I go to the dog park every day, she said, "when I'm reincarnated I want to come back as one of your pets." :D
sasha_feather: sirius black from harry potter films (sirius black)
This is the level 3 class and will be focused on creativity.
class 1 )
journaling )
values )


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

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