things all able bodied people should read - or even non-able-bodied people, who don't have fibro or chronic fatigue

i was going to post about the embroidery drama tonight, but then i realized that today was blogging against disablism day (BADD), and decided that posting the links i've been collecting would be a better idea.

i posted the other day and mentioned that i have fibromyalgia and chronic fatigue (as well as a few other things), and that's why sometimes i get behind on posting, i'm just not feeling coherent enough, or i've been feeling so crummy that i have very little to actually post about!

i thought i'd post a few links, to things that i found interesting, or that really resonated with me. i've been extremely lucky to have close friends and family who try to understand, for the most part, with a few notable exceptions, but i know it's hard for even them to understand. they see me on a regular basis (the family at least, friends, unfortunately not as often), and have a general idea of what's going on in my life, but there's more to it than being tired or weak or walking funny. there's the pain that i don't talk about, because frankly i get tired of talking about it sometimes, there's the "fog", the confusion and inability to think clearly and remember things, there's the emotional strain, the stress, the overwhelming sadness that i feel sometimes, the frustration with the ableist behaviours of the people and the world around me, the constant stress of dealing with my disability company and various doctors, the frustration at being unable to do things that i used to do, the seclusion, the wear and tear on my body that "faking" healthy for short periods causes, and so much more.

renee at womanist musings posted a post for BADD called fibromyalgia: the invisible pain that's very very good.

the spoon theory from butyoudontlooksick.com is a bit of a classic, but something that i wish everyone would read. (pdf)

The Open Letter To Those Without CFS/Fibro is good, with the exception of the last bit about getting better. quite frankly, there is no cure. the sooner we can move beyond the ableist idea that getting better and back to "regular" life is the holy grail, the sooner we can see the value in people regardless of dis/ability (and thus allow ourselves to live full lives with disabilities without shame or depression). there's nothing inherently WRONG about having a disability. there is no value to it, good or bad, it simply IS. the values that we subscribe to around dis/ability are values that society has placed on it and on the people people living in differently abled bodies. these values are about as accurate as the values society has placed on women's bodies, and haven't we figured out by now what a crock of shit that is?

the invisible illness bingo card is great. (with the exception of the author's response re: medical pot in the comments. it was a valid point, and that was just rude, frankly) goddamn i hate that shit, yet you get it all the time. some of the ones i've gotten -
"maybe it's the ink from your tattoos that's making you sick" right grandma, cause that's exactly why everyone with tattoos has fibro, but no one without tattoos ever gets it!
"it's not like you're REALLY disabled, so i don't think you have any right to say if you think something seems ableist. it's not like you use a cane or something." first, ALL people have a responsibility to dispute oppressive behaviours, so my ability or lack of ability has nothing whatsoever to do with your oppressive behaviours, but good try. second, lots of people with disabilities don't use mobility aids, for lots of different reasons, that doesn't mean that they don't really have disabilities! i rarely use one because if i'm bad enough to need it that day, i'm not leaving my freaking house, but that's actually none of your business.
"oh, you're so LUCKY! i'd love to sleep all day/stay home/not work/get a massage" this is by far the most common. trust me, you wouldn't really love it. i sleep all day because i'm freaking exhausted. not because i stayed up all night drinking and dancing, or even stayed up all night crafting, but because i tried to do something like go to the grocery store. sometimes i'm freaking exhausted for no reason at all! and if i could work, i WOULD work. i miss work! and massages freaking hurt. my twice weekly massages are loosen up my muscles so that they don't hurt more, they are not surface spa massages. they hurt. trust me.
"you're too young to be this sick, so you must be imagining it!" thank you mr specialist. it's so nice to know that you've gone to medical school for so many years and yet you learned so little.
"hey, you should buy this magic drink that i sell on the side! it'll totally cure you!" this one came from the president of my union local. yes, it really did. that was the extent of the support he gave me. hence why we went over his head to the provincial level. i unfortunately work in a fairly conservative area, and so he continues to be re-elected despite his sexist, racist, homophobic and ableist attitudes.
"if you stopped eating this/drinking this/smoking this, you'd be cured!" right. it's just that easy. thanks!
"it's just because you're fat" right. which totally explains why so many skinny and averaged size people ALSO have fibro and CFS!
"it's all in your head" actually, in some ways it kinda is, because they think it has to do with how our bodies react to and respond to pain (hence why anti-seizure drugs are commonly used to treat fibro). but i don't think that's what you meant.
and more. lots more. i get the "my coworker's sister-in-law's cousin's ex boyfriend's sister tried this and it cured her" one all the freaking time too.

this post, fibromyalgia: when your brain is not your friend is really good, and i actually sent it to my mom last week. there are a few things i disagree with (i don't know where people keep getting this idea that the pain is consistent for your entire life! where are all these fibro patients who say that? everyone i know is the opposite! and god, enough with the "suffering from" crap. people "living with", okay?), but it's a really good description of the less pain focused effects of fibro. the comments are highly annoying, just as a warning.

this post at the hand mirror is FABULOUS. i am so freaking tired of the word "lame" being used to equal bad, and so frustrated by otherwise politically aware people refusing to acknowledge that their insistence in using the word IS oppressive and inappropriate.




and there are SO MANY more blog posts posted today that are linked to the diary of a goldfish, and i haven't even begun to read the majority of them!

shopping! in person, and online...

sooo. in my quest to obtain more craft supplies than i will EVER live long enough to use, i've discovered a few really awesome shops. some of them i bought from quite a while ago, but i'm assuming they haven't changed much.

first of all, i adore etsy, really i do. i can find such awesome supplies there, and everyones customer service is so fabulous.

the first is spirit girl, who i've ordered from multiple times, and she's fabulous. it's always super quick, and i love my beads.

i've also ordered from evol pixie's supply, and while they took a little while to get here, it WAS over christmas, and everything was fabulous and wrapped so securely!

i ordered a bunch of vintage beads from peppermint soda, and they were all soooo gorgeous! and she sent some extra goodies!

and i ordered my mom's mother's day present (yes, very early!) from epoch beads, and it's great! she sent extra goodies too!

you know, i buy a lot of beads for someone who sucks at jewelery making as much as i do....

as for ephemera, which is my other major weakness (but is luckily used much more than the beads!), i've been buying that both online and in person.

i finally caved and investigated skybluepink after hearing about them for ages. my order came, and i IMMEDIATELY had to start crafting with it, i loved everything i got. her service was totally stellar (i e-mailed her to add to my order after i started obsessing), and her prices are really really good. plus, she ships to canada without ripping you off! i LOVE shops like that!

and i also checked out the paper flea market, after rackycoo raved about them. they too are pretty cheap, though they aren't so great about shipping to canada (why do shops insist on using UPS for intl packages? UPS sucks ass!). i haven't received from them yet, i had the package shipped to the US, but i'm excited about it.

in person, i finally made my way down to ruby dog's art house, after hearing about it for so long. what an amazing place! the selection totally makes up for the hassle of getting there (why is there never parking on main st? obviously this is an issue, hello city hall! and it drives me crazy when stores aren't open monday!) i got so much amazing stuff for collages and altered art, and used some of it on on the still-secret tip in pages. the owner was very chatty, and i ended up staying in the store for much longer than i anticipated, though it was totally worth it! very fun stuff, such as old cheques, and prescriptions from the 1920s, empty matchbooks with fabulous images on them, lots of cool postage stamps and old labels, that sort of thing. though most of the stuff is priced individually, they also have a bulk bag section, and i filled a good size bag for about $5. the front of the store is rubber stamping supplies, and i'm determined to go back to buy that virgin mary stamp i saw.... anyway, really awesome store, totally worth checking out. be aware that it is NOT accessible though, many of the aisles are too close for wheelchair or proper cane access, and a lot of the stock is low to the ground (i ended up sitting on the floor because i couldn't crouch as needed), and if you have pet allergies, you may have problems, as ruby the dog is a member of the staff!

also on main street is urban source, which i've been going to for years now. in some ways they're similar to the newer ruby dog's, but they carry less of the "old" ephemera. their stock is primarily items from other industries, available for recycling into art supplies. they also have a lovely selection of hand made papers and different colours of cardstock, and carry some more traditional art supplies such as writing utensils, magnets, glue, etc. it's a very small store, but definitely worth checking out. i always find fabulous stuff there. (also not particularily accessible, it's too crowded, though the bins and such are high enough that you rarely have to crouch. and the whole main street parking issue again!)

i also discovered a new art store in tsawwassen called sublime art supplies and gallery. i go out there twice a week for massage, so i'm really happy to be able to pick stuff up there (and be supporting an independant store while i'm at it). it's pretty small, but they carry a large variety of stuff, including lino printing supplies (the current obsession!). and they're in the town centre mall, so i can always find parking (including handicapped spots, which are oh so rare in vancouver), and it IS accessible!

and the other store i wanted to rave about is actually out in delta as well, in ladner, the upstart crow. (and yes, i did write this entire post for the purpose of raving about the store! well, not entirely)
they carry a lot of gift type stuff, made by mostly local artisans (i found the best birthday present ever for my sister there), but more importantly, they also carry art supplies and beads! their bead selection isn't huge, since they carry lots of other stuff as well, but it's good, lots of different things, and a lot of interesting quality beads. they also carry all the basic findings, as well as some fancier ones, which is really nice, considering my other closest options are paying the super-inflated cdn prices for bags of them at micheals, or driving all the way in to country beads in kitsilano when i need things quicker than ordering them online. they also carry a selection of beautiful glass hand made beads, which are pretty much out of my price range, but gorgeous to look at. their art supply selection is really good as well, though i'm rarely in the market for things like oils, etc. they also carry some scrapbooking/altered art stuff, like rubber stamps, ink pads, some paper, and some ephemera. the most important thing about the upstart crow is the service though. i've been going there for a while now, usually on my way home from massage in tsawwassen, and for the longest time the same clerk was usually there, pam. she was super enthusiastic and helpful and fabulous, and is apparently in art school now, which explains why i never see her when i stop in during the week. the last time i went in, i was looking for a specific colour of ink pad, and i started asking questions. the owner of the store was there, and she was so incredibly helpful. she pulled out all her own personal ink pads from the studio in the back to test them for me, and took the time to show me her favourite ink technique, and had me try it myself. she also chatted with me about block printing options, and sold me a block printing medium to mix with regular acrylic ink at a VERY good discount. she showed me a few other things, but really with no pressure, and she must have spent at least half an hour with me. seriously, SUCH good service. i was really impressed. (while some areas of the store might not be accessible, the vast majority is spread out enough. they always have multiple staff working, and with their awesome sevice, i don't forsee an issue if you can't reach something. the majority of their stock is displayed high enough that you don't need to crouch or anything. they're on the street, not in a mall, but i believe there are actually a few street handicapped spots along there.)



okay, this post makes me look like i've been spending a lot of money lately.... not that much, i promise!

cool site

i found this the other day and forgot to post it.

it's a project done in sweden that teaches people who are in wheelchairs how to sew clothes that are suited for a sitting position, and it looks really cool. it's got some patterns, and some interesting info about what kinds of alterations are required when you spend your life sitting.