ysobel: A kitten on a piano keyboard (music)
In addition to everything else going on in my life (migraines, fatigue issues still, having to find new roommate, my mom is moving and therefore stressier than normal, etc -- oh, and something church related, a committee that I am halfway through a theee year term on, has me going "nononono" like that one cat, so I'm having to figure out how to respect my reaction and boundaries there without being an asshole to the other committee members and-or drowning in guilt -- but that's another story), I have a dilemma re chorus.

There are two choirs I could sing with this coming year, and I don’t have energy to do both. (I don’t know for sure that I have energy for either, tbh.)

Choir A has good rehearsal times (twice a week 4-6), only three concerts a year (Dec, Mar, June), performs at the Mondavi Center, and is free ... but the repertoire for this year is uninspired and dreary, the director is close to retirement and so doesn't have many fucks left to give and therefore isn’t as good as he used to be, and honestly the group hasn’t really been fun to sing with the last few years.

Choir B has an awesome director, and the planned repertoire for the year is amazing (including the mozart requiem, which is practically a must-sing for me) ... but it meets 7-9:30 (only once a week, but I’ve been going to bed at like 8), it’s $65 a semester, I don’t like the rehearsal location, December is crazy with concerts, and there’s an obligatory citrus sale drive every year (like Girl Scout cookie sales but eat less cute or yummy).

Some of these are bigger issues than others (e.g. I can probably get my dad to cover the cost* for choir B), but.

I don’t know what to do.

...What would be ideal is for choir B’s director to come do choir B’s repertoire with choir A, but that’s not possible.

I also don't know how much of my fatigue issues are self-creating. Not just because my Inner Critic likes calling me lazy, but because I've gotten out of the habit of Doing Things, and I'm enough of an introvert that socializing is kind of a mental muscle. It's like when you have the flu and sleep for a week and then spend a while super weak and wobbly because your body got out of the habit of doing.

...sigh.

* footnote thingie, not related to choir: I've been doing reiki, which is sort of an energy manipulation not-quite-massage thing that I'm working on a post about, and I'm doing extra reiki during the roommate transition thing -- whether or not it's "real", it really does help me with stress. I'm doing it through the church, which has scholarship funds for people who want reiki but can't afford it, so I asked and got way more of a discount than I was expecting. Except my mom -- who doesn't even know how much of it I'm scholarshipping, just that I'm getting some scholarship help -- thinks that my dad can damn well afford reiki, and has this way of, like, guilting me *and* being snide about my dad st the same time. And on the one hand I do kind of see her point -- though my dad would probably be skeptical as all get-out at reiki as a concept, much less spending money on it, so I don't want to ask him, and really I'm getting Charity regardless of whether it's my dad or the church, and I think the church people like helping me -- but omfg I wish I knew how to tell her to NOT DO THAT AUGH WTF

Though a bigger priority is getting her to stop making snarky comments about how chubby nephling is. He's a fucking baby, chubby is *good*, he does not need to "slim down" ffs. ::rageface::

Heh

Aug. 12th, 2017 01:56 am
ysobel: (Default)
I was going to complain about how my brain keeps trumpifying the songs going through my head. "Oh, I stuck my head in a little trump's hole" and "hey, mr tangerine man..." and the like. (As opposed to skunk and tambourine.$

And being awake at 1:30 and feeling smartass, I was going to jokingly refer to the first of these songs as "the song about boundaries skunks"

except

I realized

it really fucking *is* a song about boundaries

and this is somehow (see also the fact that it's 1:30 and I should be asleep) blowing my mind.

(For those not familiar with the song -- there are several tunes, and some variants, but it starts: oh I stuck my head in a little skunk's hole, and the little skunk said well bless my soul, take it out, take it out, take it out, remoooooove it. Well I didn't take it out, and the little skunk said, if you don't take it out you will wish you were dead, take it out, take it out, take it out, remoooooove it. ...and tl;dr the narrator gets sprayed and "phew! I removed it ,,, too late". As a kid this is the epitome of hilarity. As someone who is struggling with enforcing boundaries? It's ... kind of profound in a weird way.

Whee

Aug. 9th, 2017 02:10 pm
ysobel: (Default)
I don't get story ideas much any more because I don't write. (Partly I don't write because the mechanics are hard and awkward, and writing a paragraph feels like a marathon. But partly there is a self-reinforcing cycle where I don't write because the ideas don't come (or they come as a vague concept with no idea for execution, or they come and then immediately die in the throes of logistics) which means I don't write which means the ideas don't come which means...)

But lately I've been wanting to do a retelling of Beauty and the Beast where "Beauty" is an ironic nickname: she is disabled, deformed, probably has vitiligo, whatever. And so they call her Beauty to mock her. Maybe even she's visually impaired so they're doing it to mock her intelligence/perception as well (ha ha she doesn't even know we're making fun of her, how pathetic is that)

And then today I realized: the Beast, often, is cursed such that they look like they act. I don't know quite how disabled!Beauty meets her Beast, but I have this image of her hearing the curse story and going "what no that's *bullshit* i mean do i look this way because I'm a horrible person? Does (Gastón analogue) look like he acts? Pretty sure not. Fuck this."

...and then I'm like well what if part of the purpose of the curse is that the pre-Beast had an attitude of "disabled people are inferior" and so got made disabled as a very ineffective morality lesson

...and then I spent about half an hour flailing about because AUGH NO, red alert red alert, you are going to fuck this up in completely ableist ways, flaiiiiiil.

Because my brain is logical like that...
ysobel: (Default)
... I can stop anytime I want ... I just don't want to ...

Or, more merge dragons tips. These are as much for myself as other people, but totally for other people too.

Read more... )#

Like I said: totally not obsessed.
ysobel: (me)
I posted https://ysobel.dreamwidth.org/538921.html about a kid with my medical condition who was in the hospital and needed prayers. (Personally I don't believe that prayers will fix everything -- it is not a vending machine, where you insert prayer and collect pony / get healed / etc -- but I like to believe that putting positive energy into the universe certainly can't hurt, and ... I'm babbling, right.)

I just checked her mom's Facebook page after a few days of forgetting, and the current situation is that her left lung has collapsed *and* she has raging pneumonia.

There are good things: she has a trach, added like a week or so ago, which means her medical team has better access to her airway; she *has* a good medical team; and her right lung is extremely kick-ass. (I guess having a fused rib cage means the lungs tend to get better about working in the space they have, or something?)

But she's only fucking 11 years old (I think her birthday's this month) and she's *tiny* and skinny and has no reserves to lean on. Her co2 numbers have been high, and vitals all over the place. I'm scared for her, and for her family, and in a weird way for myself. (Pneumonia is one of the two main killers of FOP people. Falling is the other. I don't walk or stand, so falling is less likely to happen, but pneumonia is still something I could get. I try hard not to, but,)

If you are so inclined, please send prayers or healing vibes Erin's way, or light a candle for her, or whatever positive-energy ritual you have. 💜💜💜

Omgwtfbbq

Jul. 30th, 2017 06:28 pm
ysobel: A man wielding a kitchen knife and making an adorable yelling face (rage)
Okay, so. My aide M is living with a couple of friends of hers, T and J. They are both on the older side. J has health problems that I don't know the details of, but that include a recent heart attack
And also a recent "we might have to amputate your legs" something for which she is still in the hospital.

M sent me kitten pictures earlier this week. Then one of her other clients went out of town and she went with him. Tonight's shifts are the first time I've seen them.

She mentioned how she hadn't had time to check on the kitten, or see how the weekend went, because T, who doesn't really like cats, was catsitting for her.

I got the chance to ask what was up with the kitten.

"Oh, I got it for J! It'll be therapy for when she gets out of the hospital!"

Uh, does she want a cat?

"Oh she loves cats!"

...but does she want to OWN a cat?

"Well I don't know, hahaha, but I couldn't just abandon it! I spent like $140 on the vet, having it checked up, and they did tests. It had pinkeye when I found it but I got antibiotics and it's looking so much better! I mean it's a ten day treatment and this is only like day three, but I'm sure it'll be fine, and I couldn't leave him with just ANYONE, right?"

...I want to scream.

This is basically M wanting a cat, and she's very soft-hearted and wouldn't be able to just leave it to die, but

*rage*

It's not a good idea, when you're living paycheck to paycheck, do sink a bunch of money into medical care for a stray cat. That sounds heartless but this is someone that has been unable to come to work once or twice because of not having gas money; who gets irrational and paranoid when hypoglycemic but doesn't always have money for food; who doesn't take care of her OWN medical issues.

It's not a good idea to take someone that's doing you a favor (she has place to stay in exchange for helping them out) and make them care for an animal they don't like, including giving eye medicine for a contagious illness.

It's not a good idea to foist a pet on a disabled person; it's one thing for a disabled person to own pets, as I do, but this is NOT J's choice, and even if she wanted a cat it's stupid to not let her choose one for herself

It's fucking unfair to the cat -- medical care is good, yes, but this whole situation REEKS of badness

It's fucking unfair to the people around her

*what the fuck is M even thinking* oh right she's not

*fumes*
ysobel: (easily distracted)
Games

Okay so a few months back, I was going to post about the games (mostly iOS) that I was obsessed with, only then I decided I had to do the Best And Most Thorough Recs Ever. Which sort of made it such a stupendously monumental task that I never did it.

I still may do a more in-depth thing later, but these are my current or recent iOS games. (Some may be available on other platforms, I don't know.)

The Game Formerly Known As Abyssrium

I'm sure they had good reasons for changing the name from Abyssrium (which evoked the premise of a deep-ocean virtual aquarium) to "Tap Tap Fish" (ugh) but the change very nearly kicked it off the list. But ... eh.

Read more... )

#

Zen Koi

Here, fishy fishy fishy. Pretty fishy.

Read more... )

#

Merge Dragons!

This game has taken over my life, I think. I even get the Tetris effect of closing my eyes and seeing MD stuff.

Read more... )

I have more, but this is enough for one post /) I'm not sure whether the remainder will be one post or two.

Feel free to ask me any questions about any of these apps.

I'm a dork

Jul. 4th, 2017 11:30 pm
ysobel: (Default)
...the epitome of Independence Day, for me, is not so much official fireworks -- and definitely not about personal ones -- so much as lying in bed afterwards, eyes closed, listening to 1812 Overture on repeat, waving my hands during the fun bits like I'm conducting.

Yup.
ysobel: (Default)
One of my dreams last night involved me talking about how some German communities -- particularly the were-shifters -- came over to America to escape persecution, and brought their traditions with them.

Traditions like Thanksgiving meal (turkey and potatoes in particular).

And all this was happening around 1066.

::eyes brain in amusement::
ysobel: (me)
Okay, so, uh. Most of you know that I have a condition called FOP -- Fibrodysplasia Ossificans Progressiva. For anyone who doesn't: it’s a really fucking rare medical condition where the body creates bone in and around muscles and tendons, progressively immobilizing the body into a human statue. It is incurable and untreatable.

This is a highly relevant video:



The 11-year-old in that video, Erin, got sick in April with basically the common cold, but it landed her in ICU. Between the severe scoliosis that FOP causes (I have way milder curvature because I was older when I started losing mobility, 10 instead of Erin’s 3, and my progression was slower) and the bone locking up her rib cage and taking up space in her chest, her airway is severely compromised. She was intubated as a last-resort measure for keeping her alive.

For the last two months, she’s been bouncing between ICU and “regular” hospital. About a week ago, her parents and doctors were discussing long term care options -- either BiPAP and hope like hell she never gets sick again, or a permanent tracheotomy. The trach procedure, complicated by the restrictions of FOP, would have her in the hospital until at least September and probably longer.

Four hours ago, she stopped breathing.

She has been successfully (re-)intubated, but... it’s bad and scary and so fucking not fair she’s a fucking *kid*, she isn't even 12 yet, she shouldn't be in the fucking *hospital* for *months*, let alone almost fucking *dying*.

(and if I’m being honest, this is fucking scaring me, not just on her behalf. My airway isn’t as bad, but this could be in my future too, and in another universe it could have been my path.)

So. Please, if you pray or send positive vibes or whatever, please send some to Erin and her family.

(She also loves postcards -- address is here -- but mainly I just want positive energy out in the universe for her.)
ysobel: (Default)
So I don't know if I mentioned it here at all, but I've been getting Reiki treatments for the past six months or so. Reiki, at least as far as I understand it, which isn't very far, involves energy manipulation, and s sort of like a massage only with gentle touch and rubbing your energy rather than your muscles.

(No, rubbing energy is not intended as a euphemism, shush.)

There is a part of me that thinks, stubbornly, cynically, that it's Woo. Kind of like the book my maternal grandmother sent me, when I was first diagnosed with FOP, about using visualization to do everything from curing cancer to getting your dream job/home/whatever, as long as you visualize hard enough and so it every day. Or like the "pray to Jesus and He will cure everything" thing that Christians do, based on the "if you have enough faith you can move mountains" scripture. Both of which are extremely victim-blaming: if you don't get magically better, you just didn't try hard enough.

But. Reiki ... well, it's not a magic cure-all, but it also wasn't presented to me as one; there are local people who use it for cancer patients but less in a "this will magically disappear your tumor" and more in a "this will help you get through the effects of chemo/radiation" way; and I fully believe there are things that science doesn't really know about yet, and "science can't explain this" is not a *validation* of alternative techniques but it isn't a contradiction either -- but regardless.

Even if it is pure woo, which I don't think it is? The touch aspect is huge for me. Most of the touch I get is functional, like my aides wiping my butt after I poop, but it's not really the level of touch that I crave; a lot of the remainder is my mom touching me, which is as awkward and fraught with complications as it is helpful. I can't cuddle. I can't hold hands. I can't lean against someone. I am massively touch-deprived, massively isolated because of both the wheelchair and the position I'm fixed in, and *even if Reiki is entirely woo it is a way I get meaningful touch*, and that is hugely significant.

It's also really interesting ... I know that priopreception is a thing and that we are aware of our own bodies, but usually my perception of my body is very dissociated and very blobby, kind of this:

Read more... )

Somehow, especially with the person I've done most of my sessions with, reiki gives me back a sense of my body. It's related to the touch thing, I'm sure, but -- a few months back she was doing stuff with my lower legs and feet, and I was connected with them as leg- and feet-shaped objects; even though my feet are blobs, IRL as well as in my self perception, for that while they felt like normal feet-shaped feet.

And mostly I don't want a sense of my body, because all my body brings me is pain and/or immobility, but it's nice just feeling like I get plugged back in. Like I'm actually a person and not a blob.

And that's a significant thing too.

Concert!

Jun. 9th, 2017 10:26 pm
ysobel: (Default)
Had choir concert today. Also two hours of rehearsal, but it went better than I thought it would (often we're over-rehearsed or just plain tired, when we rehearse a lot on the same day as the concert).

But more importantly, it is available on YouTube!

I don't know how long that will last -- it was advertised (sort of) as a livestream thing, and I don't know if they take those down or not. But:

...dammit, I forgot they don't like giving embed code to mobile users. Link for now, and I'll edit it tomorrow

https://youtu.be/itVYdYp1k9M

ETA got the embed code yay

ysobel: (Default)
Reading http://reasoningwithvampires.tumblr.com/ is making me want to do a horror rewrite of Twilight for my next nano novel.
ysobel: (me)
There was one point, shortly after I was diagnosed with FOP, that I learned that the worst cases of FOP left everything immobilized except fingers and face muscles. At the time I was horrified, since I still had decent mobility, but then I figured it was only the worst case scenario and maybe I'd get lucky.

(Heh.)

Turns out, fingers aren't at all immune. I kept meaning to document the restrictions -- more so now that within the last year my left index finger has gotten affected. So here's the current state of my left hand:



(Right hand is in better shape -- the base of the thumb is locked, the pinky is crooked and bent and doesn't straighten, and the tipmost joint of the index finger is mostly fused, but I can clench a fist okay.)
ysobel: (learning german)
Tried poking at French on duolingo ... and then realized it would mess up any Spanish attempts (or the Spanish attempts would much up French) because they look similar and sound so different, and I had a moment of "je suis, tu eres, il/elle/es est" (bad jumble of french and Spanish with a soupçon of German). So ... for now I go back to German for Duolingo purposes, and refresh Spanish grammar/vocab through other sites. (I am currently tempted by https://www.rocketlanguages.com/ which is paid, but I will probably get over that temptation and just stick to free resources.)

I did realize why I suddenly had urges to go do other languages, Greek or French or whatnot, rather than continuing with German. It's because the words aren't sticking right now. It's not difficult vocabulary -- z.b. Ort, Kneipe, Bezirk, Grundstück, Umgebung, Unterkünfte -- but I can't remember the words or their meanings at all. Each time it's like I'm seeing the word for the first time, and by the time it comes up again I've dropped it again.

Which is, um. Frustrating. And makes me want to avoid it. And to some extent repetition is the key to learning things like this, but it's hard to repeat things you can't hold on to.

I kind of wish I could just download language knowledge into my brain.
ysobel: (Default)
I started to suspect part of my fatigue and brain fog problem right now may be a UTI -- no pain, very few of the usual symptoms, but cloudy pee that smells funny is not a good sign -- and I've been wondering if I should message my doctor and see if I can get tested and, assuming I do have one, get on antibiotics. I don’t like taking antibiotics, but I’ve suspected possible UTI for at least a week and it’s not going away on its own, and it’s probably not a good idea to let an infection go untreated just because it’s not painful.

Then last night I had a dream where I took Monkey to a specialized vet because -- and my subconscious is being super subtle here -- I had two weeks earlier taken her to my regular vet, who thought she had a UTI but there were two tests and one said yes and one said no so they weren’t sure but suggested I go to this other place, but I waited until after I got back from a week-long trip that included going to some sort of conference; and the new vet was yelling at me about how I needed to take better care of my cat, I should have canceled the trip and brought her in right away, blah blah blah.

No cats were harmed in the making of this dream, but, like I said: subtle. I wonder what it means...

(Called my doctor’s office, which was a hassle and a half -- partly because I don’t have most of the typical UTI symptoms like pain or burning or urgency, partly because they kept wanting me to make an appointment and I kept having to say “I am disabled and can’t give a urine sample at the doctor’s office, she’s going to want a urine test anyway so I should do that first, I’m fine with making an appointment but I want to get the urine test done first yes I fucking well ‘have trouble walking’ I am in a fucking wheelchair and can’t fucking use regular toilets what the fuck (paraphrased; I didn’t swear), my doctor is familiar with my circumstances please just send her a message” -- it would have been less work to message her myself (“suspect uti, please order test”) but that doesn’t always get seen the same day. We shall see what happens.)

#

In other news: For all that I am way behind on making the yarny stuff I want to make, I find myself wanting to make a small stuffed bunny for someone I’ve never met. (I don’t remember if I posted here or not about the 11 year old girl with FOP that was in ICU because of complications of parainfluenza and FOP-created scoliosis, and she had to be intubated, which can cause FOP issues but was kind of a Hail Mary as it was? She’s still in the PICU and will be for a while, but she’s doing better; got extubated yesterday and is on bipap, and in much better shape, though there’s still a long way to go. I asked her mom what her favorite animal and color are (bunnies/turkeys and pink/purple respectively) because I just … I don’t know, want to do something for her. And a crocheted pink bunny seems doable?)
ysobel: (Default)
I've decided to temporarily give up on Greek -- I'm still curious about it, but Duo isn't the best mechanism for learning it.

Still haven't decided between Russian, refresher course in Spanish, or German. For tonight I did Russian, going back to the beginning, but I think it is more like Greek, in that I really need solid grammar info as well as what Duo gives. There is something to be said for using real words instead of memorizing charts, but there's also something to be said for the charts. Especially since my brain is not the super-elastic brain of a child.

But I did find that the Greek iThing keyboard is a lot easier to grok for English speakers than the Russian keyboard.

blathering about keyboard layouts )

Ah, human/computer interaction and user interface design. Two subsets of my major that I learned very little about! (I'm still resentful about my major -- I sort of herded myself into it because I could finish in time with what I had already taken, and while there's a lot of fascinating stuff, flailing is not the best way to come at a major. And I picked a specialty in eenie-meenie fashion, ending up in computer music because "I like music" and because it had the fewest classes, or at any rate the fewest horrid-sounding ones (I thoroughly hated philosophy by that point); only I'm not a composer and the classes turned out to be basically graduate-level, which is not the best for a flailing depressive undergrad. I still half feel like I didn't deserve my degree, that the (minor but still freaky) car accident I was in gave me sympathy points and the resident faculty member of my dorm was the head computer music person (oh yeah that was another reason) and idek. Back to the point though: if I'd come in wanting to do symsys from the first, rather than starting with computer science and then not being able to do that but not having enough time to do another major (and there's no way in hell im going TiVo ask my parents now whether they would have funded another year if I'd needed it, because the answer will probably make me sad) and so grasping at symsys as a last resort panic option, I would have made different choices, something more linguistics-y or user interface design -y. And I've lost track of my parenthetical. Was this a parenthetical? I think so.)
ysobel: A cat flopped out on the floor; text: meh (meh)
Well, the whole "learn Greek" thing seemed like a great idea until I got out of the alphabet section and into the words.

I need to check the website info (it drives me crazy that the website has information -- like blurbs about indefinite articles or conjugations or whatever -- that doesn't appear in the app) but there's no way I am going to remember anything. There are about five words for a/the (and without information I don't know whether it's based on noun gender or whether the next word Astarte with a consonant or whatever), plus I can't remember the words for "man" and "woman" even from one screen to the next.

So my options seem to be a) stay with Greek and get completely overwhelmed; b) switch over to Russian to see if that sticks any better; c) go back to re-refreshing German; or d) refresh Spanish and start getting serious about things like consuming Spanish media and whatever so that I can get passably ... well, fluent seems unlikely, but I guess conversant or whatever.

Or e) give the fuck up because my brain is broken so why am I even trying. But I think that's the depression brainweasels talking.
ysobel: (learning german)
So I went to the Duo Facebook page to see if there was information about the app changes (health meter and "gema")

There wasn't

...but a) there was an announcement about Japanese coming to Duo, and b) i sort of ended up starting the Greek course. No real reason (especially since it's modern Greek rather than ancient) but it's not like welsh had a purpose, lol. I do judge courses based on the early lessons (eg i want to learn danish but the first lesson makes me despair -- "drengen" sounds like drying but smushed into one syllable, "kvinden" sounds like kving, and it doesn't make *sense*) but Greek is starting with the alphabet. Sensible.

So far I can say such useful things as το γράμμα δέλτα (to gramma delta / the letter d), woo. Knowing Cyrillic helps, because I'm already used to ρ being r and π being p; otoh I suspect knowing German will make me inclined to read β as ss rather than b.

...I'm not sure why I'm switching. I'm not at the end of the German course. I'm not even up to where I was before -- I did the course up to like 10 units from the end, and then wandered off to welsh, and then had forgotten some of the German so I went back to re-do each unit that had unfamiliar words, and I'm only up to the middle of the fifth section, 57 units behind the farthest unlocked one. And it would make sense to stay with German because it's familiar -- I used to be fluent back in high school, so right now it's a weird mix of translation and knowing; there are some words that i have to think about and some words that are just sort of there, I have to look up tatsächlich but selbstverständlich is just, well, self-evident, no pun intended.

Semi unrelatedly, I'm still frustrated at the differences between the website and the app -- how much information isn't available through the app. Things like https://www.duolingo.com/words or like the blurb for a lesson about how articles work or conjugations or whatever. I find the app easier to use, but then I miss stuff. Grarh.
ysobel: Pink bunny (bunny comics), head cut open, completely hollow (no brain today)
Migraines suck.

Just in case anyone was still wondering.

(At least imitrex gets it to a level where I can follow a podcast, or sometimes even Netflix -- nothing that requires concentration, but the new mst3k series is perfect. And I just watched the episode with NPH guest starring, whee.)

(...that was today. Yesterday I did the "derp I feel like crap and there's an icepick in my head and I'm super nauseous and photosensitive GEE WHAT COULD POSSIBLY BE HAPPENING maybw I'll just wait it out hm why is it getting worse" thing for a few hours, which meant that when I finally did take imitrex it didn't kick in for a while and i was still feeling like warmed-over death when I went to bed. This morning when I woke up to migraine symptoms I actually took med pretty much i,mediately, and it worked better. Whodathunkit.)

(Though I do have to lolwut at my mom, who responds to "i have a migraine" with about ten zillion questions including whether it was the first day (and mind you we'd talked the day before, and i mentioned the migraine the first time we talked yesterday; i don't know why she perpetually thjnks I'm not telling her things) or whether the imitrex worked or whatever. Luckily this was by email, not in person, so I didn't have to kill her, but sheesh -- I do not need an interrogation when my brain is approximating molten lava, tyvm.)

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masquerading as a man with a reason

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