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Thinking about quiet things to do today, sedentary but productive and not all about computers. This is not a list of things which all need doing, it's just something to choose from.

Note, if you go on etsy and look for "punk note cards" you will quickly think, "What the fuck is WRONG with me" especially once there are no good options. All my notecards are pretty landscape paintings suitable for mailing to my remaining grandparent. Amazon has got nothing. Etsy, fucking nothing and nothing good for "feminist" either. Note to world. Those retro pictures of some woman looking femmy from the 40s and saying "fuck" don't make it feminist. for fuck's sake.

I believe precita eyes store over on 24th has either postcards or notecards with some women other than (but including) frida kahlo. thank fuck. in the meantime I will make my own, which in theory is as it should be, but in practice I would like to buy some!

Computers:

Get all my data off Revolt's hacked up hard drive and get it back to him.
More setting up of power strips in convenient places by the couch, counter, kids' room
Fiddle with music things. Can I get it so my giant music collection will play to speakers?
Open up Airport Express and just look at it. Read up on what might be wrong with it.
Write short blog posts about books.
See if there is a better blogging client than MarsEdit.
Play clash of clans since it's now Battle Day for my family clan

House:

Continue clearing desk area, go thru file cabinet
Does the metal shelf in-out box from garage fit under the "charging table"?
Laundry. Clean laundry smells like mildew. Get z. to re-wash with borax
Coax the cat to eat tidbits.
Groceries for the week. make a list. zond7? or instacart?
Cook some delicious plátanos today.
Deep water all the plants.

Projects:

Write another letters. 2 per week is good. Maybe 1 per day.
Think of some more letter writing people. Ask for addresses.
Write to grandma finally even if no printed photos seem suitable
Make more notecards. Punk feminist ones. Color them with colored pencils.
Make set of punk feminist notecards for my sister
Look over poems.
New tiny zine (Alpha Suffrage Club) research and writing
Plan new tiny zine on combahee river collective. Important!
Organize sticker collection at least roughly, in envelopes.
Hardware store again to contemplate fancy small plant pots.
Repot tiny succulents as presents for R. and the nice post office lady


Thoughts

How many people can I handle seeing this week.
- intern
- yatima's brother
- tru
- Revolt
- hazelbroom
- sundress?
- would like to call debbie
- new nice friend who plays ingress?

That is too many. Dammit. Maybe will need to wait till post mexico visit to invite extra people.

My luxurious bath and applying a korean face mask, then every kind of lotion I own last night including the low strength marijuana lotion - that was a good plan. I feel extremely moisturized, and smell like rosemary and lemon.
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We all need shelter some of the time.

Hug or send your good thoughts to a feminist activist today

Or just anyone near or far.
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Still covered in scabs, not super intense looking but painful. Still off work. I have had many short naps. Frustratingly not better yet.
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Feels like maybe people will expect me to be back at work monday but I do not feel ready. Still waking up whimpering in pain and unwilling to move. Still in massive pain just turning over or walking across the house. It hurts to type on the computer (Am doing it anyway, I have a special position for it with my arm sort of glued to the painful side and the computer down low on my belly)

I think I will do the paperwork and aim for next week out too rather than try to aim for wednesday or something.

my ankles still feel amazing and fabulous. getting out of the cab yesterday from therapy i looked to the end of the street and thought, I could walk that far, if my side didn't hurt. I wonder if I will be better from the shingles, but still under the good effect of the prednisone, for long enough to walk to the corner and back!

I wonder if I could agitate for a more frequent steroid burst experimentally.
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I had a great time at the minicon and party last night and kind of participated quietly at the level I could handle. It is partly about planning and partly about changing my expectations of what I can do.

Sat on padded benches near the back with people I knew all around. And just kind of listened to the panels and gossiped and spaced out. Then we went to stef's house which was a block away and where he made us all tea while we laid on enormous couches playing with the cat. How ideal! It was like stunningly better than my other plan which was lying on the floor upstairs somewhere in the club.

Then back to trek up the stairs, which I partly had to sort of bump up on my ass becasue I was dizzy and also my left arm is too weak to really support my weight. I had some very nice drinks and conversations. stef wants to do welding and design things for the scooter project. Woooo! I knew we would find someone nice. we'll see.

I was standing next to Laura Poitras and wanted to talk with her and with Bruce S. but they were so deep in conversation and I didn't think that either of my reasons to talk with them was cause to interrupt their Deep Thoughts. But, swoon, Poitras. <3 <3 <3 <3 <3

Then went and fulfilled the plan to lie on the floor int he green room area.

I felt suffused with love for everyone there for their battles against dystopia. Flawed as they may be. (people and battles)

Spent goodly amt of time just looking at sarah's amazon stats with her and giggling happily as her book is #1 in various categories. I predict good things will and already are coming of this.

We stayed just till the start of the main party to see robotsnowden and short speeches & then escaped. I went to sleep and D. live tweeted his reading of sarah's book until like 4am.

Today, hung with Moomin quietly and then dropped him at the library to meet rook. Went to therapy (first time in over a month) A lot has happened. Feels like a year! I took notes on some things. I come out of it relieved to talk things over and with some practical thoughts that crystalize and then I go over them and type them up in a big list of Therapy Insights About Pain and Disability and Slowing the Fuck Down.

Pain was sometimes manageable today to like a "6" level with out vicodin but then went sparking up in the afternoon to an "I can't even think straight" 7 so I took a vicodin and went off in the car.

Riding in a car is very very hidesouly painful with shingles on your torso because everything shakes it around and you have to hold the seatbelt out from your body completely. There is a decision to be made about whether your back should touch and stick to the back of the seat, or whether you hunch forwards trying not to have friction, but having more jolting. I opted for molding myself to the back of the seat. I feel raw! Flayed even.

Many more thoughts but time to sleep.

My ambitions this weekend are to water all the plants slowly and tenaciously.
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I just read a bunch of these, and can heartily recommend books 1 through 3. In book 1 we meet Jacky, an orphan girl from London during the Napoleonic War era. She is part of a street urchin thief gang that lives under a bridge. Then she disguises herself as a boy and goes to sea. Naval battles and adventures! In Book 2 she has been discovered to be a girl and sent to boarding school in Boston. She still has lots of adventures and it's really good. Book 3 she has more nautical adventures, going on a whaler, then a ship that basically turns pirate and privateer. Irish politics are touched on.

I liked that the books are very anti-slut-shaming on all counts. Swashbuckling and adventures. The girls constantly kill people who threaten them. There is threat of rape and even a girl telling about past rape but it didn't feel badly done. Quite the reverse, it was satisfying.

Trigger warning: stupid racism against African American and Native Americans in Book 4.
Read more... )
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It comforted me that once I increased the gabapentin (900mg 3x a day) I didn't even think about taking vicodin. Not that I ahve taken very much of it but when I have to take it steadily for even a few days I worry that someone will think I am addicted. Once again, I can report that I can be taking 5mg of vicodin 4 times a day (a piddling amount) for days, and then go off it and not care as long as I am not in pain and therefore I conclude that I need not worry about opiate addiction. Even if it would be a different story if I were on heavy doses for months and then had to go off, I don't feel a "tendency" to be addicted to anything at all!

My goal for today was going to be, no extra painkillers other than gabapentin but I think it should instead be "appropriate pain control". we will see
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Every time someone "friends" me like on FB or flickr I see if we have mutual friends and then I have to check if they are a wheelchair/disability fetishist. It can be hard to tell at first if they talk a lot or repost things on disability pride. But you can tell if you poke around. Someone will be friends with 40 people I'm already friends with and they're all disabled, and then I realize it's a fetishist.

Whyyyyy are people so gross.
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Well as I suspected 900mg of gabapentin made me very groggy. Sleep was strange & hallucinatory.
I took 600mg this morning and was able to get up and get coffee and bread and eat it in bed.
Appreciating that I can manage that.
Head very swimmy and dizzy. I am just going to lie here.

I thought that the coffee this morning and not taking 900 mg quite yet would mean I have some more lucidity as a treat. Then at noon I will take 900mg and who knows how that will go. I will lie here like a sort of cosily beached flannel coated manatee, gently hallucinating in and out of dreams.

One thing that comforts me a lot in this state is to have a nicely arranged bedside table.
I have flowers on it, my touch lamp torchiere (pointing up) which i really love being able to adjust to 3 levels of light, shea butter, coffee/tea mug, a giant chunk of green glass, my crystal cube holographic print of the entire universe, and my wooden letter rack that holdes all my devices sideways for recharging. It holds my 11 inch Macbook Air, a kindle, an external hard drive, my phone, and an external battery and sometimes also Danny's mini iPad. That's a lot of devices in a very neat, compact space!

Two big power strips are hung on the side of the nightstand. Over the power strips in the space between the bed and the nightstand, I now have a thing I bought off Amazon, called an "Urban Shelf", an idea for a thing covering this space which I have tried to construct from junk several times and failed to implement. the Urban Shelf works very decently. Its slots for power cords have been helpful and now my million tangly cords are less in the way. Right now the urban shelf holds a kleenex box but it has also been good for my entire laptop, plates, etc.

I like being able to look over at the nicely arranged nightstand at the flowers and polished wooden surface. I polish it with lotion or oil. I like to turn on the lamp which glows gently through its own glass, the red glass of my bud vase and the green and universe glass. Past the flowers on the side of the narrow bookshelf I can see my little trading card that has Oracle on it at her computer. Secretly corny shrine to Oracle..... Maybe I will get an Instapainting oil on canvas version of Oracle surrounded by screens in her wheelchair. I find it so heartening - I can't experess how it chirks me up to connect anything about my situation with a badass superhero mastermind.

Inside the nightstand drawer I have many conveniences like earplugs, nail clippers, lidocaine cream and other lotions, usb sticks, clips, headphones, lip balm, bookmarks, hair ties, toothpicks, some medicine, pens, scissors, asthma inhaler. I would be so lost without this magic drawer full of junk! The cubby below the drawer in theory should have a selection of good books but right now it needs to be cleaned out since it's so stuffed full of books you can't really get use out of it.

Maybe if I have a limber and non dizzy moment I'll clean out that cubby and stock it with only a few books good for bedside comfort, a drawing pad, crossword puzzle book, and maybe a couple of "to read" books lined up (instead of an enormous jumble).

Of other things to appreciate about my situation, once again the steroid burst means that I have almost ZERO allergies. This never happens except while traveling to new places or when I'm on steroids and for a few weeks after the steroid burst. It's a small luxury to have my sinuses feel so light and not swollen and to not have to blow my nose all the time. Yesterday I sat on the front porch and pinched leaves off my plants and did not get a giant sneeze attack or have to take actifed or benadryl.

I miss work a lot. For a few days earlier in the week I was reading and responding to urgent email. Right now I feel too drugged, stunned and distracted by pain, and messed up in general. I am exhausted.

One bad thing which I will complain about, besides the skin pain and "shocks" and burning and allodynia, is that my left side feels wrong and strange. The muscles don't work right along with the deep ache, and they spasm. I think that is maybe straining my other back muscles on that side. Sitting upright and walking and bending over feels hard and wrong. What if it stays that way.... If it does I will adapt. My ribs hurt and my guts in that stripe on the left around front and back, feel all wrong. The muscles in my low back just underneath are very sore and messed up. It is probably temporary as part of the shingles inflammation or infection of the nerve.

From looking at charts I think it may be T8 or T9. Hard to tell... Just below or at the edge of my ribs. To me, it seems wider than just one stripe, because it goes from my lower rib to my navel. Maybe it's T9. Interesting to look at the nerve/dermatome charts, anyway!
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Negative thinking patterns:

* My pain is terrible!
* I can't bear it! How long must this go on?
* I shouldn't have so much pain. I don't deserve this.
* I simply have to find some relief now!
* Why can't they make my pain go away?
* I'm going crazy! When will this all end?
* I'm going to be an invalid. I can hardly do anything any more
* I'll never get better
* This is going to get worse and worse
* No one else can really understand this pain
* It's all my fault that I'm in this mess

Frankly today every time I felt the pounding headache on top of the pain and a feeling of breathlessness or dizziness and tried to sleep I thought, what if this is actually dying and I am about to die? Ridiculous!!! No I am not. I have a super clear cut, easy to diagnose, obvious and self-limiting thing wrong that will likely be better in a week or so!


Realistic thinking (rational)

* The extreme pain is back again, but I know that it is only temporary
* By relaxing my muscles I can make my pain more bearable
* I can take a bit more rest today between activities. Tomorrow I'll do more regular activity routine
* I want to do something pleasant today as a distraction
* I can keep my breathing as deep and even as possible and this will reduce my experience of pain
* Bad days are to be expected, we all have them. I may as well enjoy what there is to enjoy, even on the bad days
* I can stay in control of the rest of my life, even when I have this pain
* Things are going slowly but in the right direction

More about thinking errors or irrationalities (or simply unproductive/unconstructive lines of thinking)
* Blaming. Blaming self, others, an incident, decision to do something
* "Should" statements. I shouldn't have been rushing, I shouldn't react to pain like this
* Polarized thinking. I'll never be able to cope, the pain will never go away (extremes)
* Catastrophizing: Thinking of the worst outcome. What if?
* Control fallacies: Either that I, or someone else, is in control of the pain. This doctor will be the one to help!
* Emotional reasoning: I'm taking too long to heal, so I must be doing something wrong.
* Filtering: Only seeing the bad things. Ignoring the good bits.
* Entitlement fallacy: Why do i have to go through this? I'm too young to be sick. I don't deserve this
* Overgeneralizing: I tried to do this x times, and it didn't work and it will never work. Today is bad, tomorrow will be worse
* Mind reading: making assumptions about other people's thoughts and intentions behind their actions.

They all blur into each other a bit!

I slip in and out of this kind of thinking a lot. I talk about it here and in person and on FB maybe a little intensely when things are bad. This helps me to get to the more rational or constructive or happy state of mind where I think of the good aspects of my life (which are MANY) and day to day pick up on the things that I enjoy that make life good.

Today I rested a lot more, i experimented with setting off my "5 minute power nap" alarm and closing my eyes and doing lots of deep breathing (hard, because distraction makes pain easier to endure)
I felt very appreciative yesterday and today of nice chats with friends over the course of the day. (Yesterday Sarah and today TW) How I appreciate that!! I had nice food. I got myself flowers delivered from Instacart. I sat out on the front porch for a few minutes here and there to look at the world and people passing by. I enjoyed just reading DW, FB, and twitter and idling through information and I read book 2 of the Bloody Jacky series. (trashy and silly but good for my state of mind)

In between those nice things and appreciating them, I fought the sorts of demons listed above. A big one for me is worrying that I was doing so well at work and now this will somehow ruin it and ruin how everyone thinks about me. In response to these thoughts I read the pain survival guide book and tried to think of good examples of people praising me at work.

I wrote to my therapist (had to cancel today's appointment, going out seems very difficult). She replied, "Remember, though, that it is very unlikely that there will be any problems with your work for you caring for yourself. Challenge those thoughts—do you have any evidence that people would rather you suffer through pain than work from home and care for yourself? You are a valued member of your community. Be gentle with how you talk to yourself!" She is a nice and smart therapist. I can read that, and think it, and believe it for a bit, and then I think again, But what if this is the thing that ruins everything? The thing that helps best is the words, Do you have any evidence. No I do not. That is solidly rooted in reality.

I hope I can work next week. Maybe short days. Meds or pain, either may make that just not possible.

My doctor suggested increasing the gabapentin from 300mg 3x daily (which I started a few days ago) to 900mg 3x daily. Yikes. I don't love gabapentin. It seems to help a bit and yet it makes me feel dull and groggy and slow. In the past, when I have taken it for extended periods of time it backfires and I end up with the "electric shock" nerve pains and shaking hands.

So, plan. Increase meds tonight. Do the "power widget" phone naps frequently tomorrow. In between power naps, do very small sets of physical therapy exercises, and enjoy life with food and books. D. will be home and it is his birthday. I can't do anything much for that but it will be a treat to just be together all day without work pressure and without anyone else. he can program or fiddle about with things or play elite.

then sunday, take a cab to my sister's, which is a big house so i can lie on a couch with no one touching me or jostling me and just chill out with her cats for her bday and that will be the family/party day. (only problem is napping would be hard, and there are stairs to get in, and cab ride will be painful) They could all come here but it would be harder i think to be in our house with so many people. (We do that often and it's nice, but i'm too much in pain to cope well with the closeness and chaos)
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I found myself in tears this morning as i contemplated how much I love plaid and my flannel sheets. Red plaid is the hobbit hole of plaids. I keep crying sentimentally over things. Or just crying from sadness. Or for no reason. Steroids are truly weird. I cannot wait for the shingles and these meds to be over.

I am actually ok though. It is nice to have the house full nicer than you would think. I wondered if i would want everyone to go away. I think i would have over the weekend. But now it is ok. Long as I can get away and lie down. It's nice not to be sick and lonely during the day (and yet to have the feeling of pressure to care for/entertain moomin not all on me)

Dizzy, weak feeling, pain comes and goes. I slept well, waking up in pain but falling asleep very quickly which was a mercy. Deep aching pain and skin pain both.

My whole left side feels weird, on and off. Stab, pinprick, pins & needles, weak or achy. Shingles are very very weird & variable. Anecdotes from the Internet seem to confirm this for everyone.

I am midway through the last Martha Wells book that I have on my list. A thing I notice that she does very well: Many moments all through her books where a male character articulates to himself about the competence of a female character, without it being a giant issue. Ways it usually goes in other books and stories: the guy says or thinks or acts in a way that questions a woman's competence. She then may protest or assert. He then maybe reluctantly agrees or yields. Or persuades her otherwise. Wells has a pattern of the guy having an inner monologue about the action that's more like, "Now we're breaking into this building. Makes sense for her to go first since she can see in the dark and all. Good thing she picked this good way to go up" Then they do that thing. Maybe she spots a sniper on the opposite building. And it works. No further comment happens. Smooth!!!!!!! It gets it out there without the "question and undermine" phase.

Played Boss Monster with mom and the kids last night. I was skeptical but it became clear it is interesting strategy after we got the rules down. I have trouble sitting up long enough. We just played some of Rat Race and I had to goe lie down. My nephew (stayed over for last 2 nights) is so very good at games and rules and loves the details so much. Moomin respects it. It's so nice how they get along.

I hoped to go to flora grubb with my mom and sister but made the better choice it hink to lie down not push myself (duh) Still so hard to do but I could not take the pain and didnt want to drag down their outing.

my mom has made awesome tomato sauce with meatballs. she is a fast efficient no fuss cook and it smells great. she cleans as she goes too (like i do, but i learned mine in the co-op kitchen) Simmering for the rest of the afternoon will make it amazing.
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No matter what hurt we are going through right now I firmly believe that we have all contributed to making many good things and have done good work. That work has been worth a lot. It was worth doing. It wasn't perfect and it hurt people along the way including all of us. I know no one wanted that. And including many times perpetuating the harms we were trying to counteract. We made mistakes and keep making them. The work stands as good for many people. I look at many many flowerings of new orgs and energy and publications and know that we are in the geneology of it (like in skud's talk about GF's origins and roots and inspirations, we are now in that chain) That good energy and effect can't be denied. Our flaws individually and collectively don't invalidate that. And they will carry on doing some good things. I feel sure of it.

Shingles

Jul. 5th, 2015 08:42 pm
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I have shingles as of thursday night. Only realized that's what it was on Friday evening. Got a house call doctor (this was amazing) and antivirals and prednisone.

Not sure about the prednisone but i'm taking it anyway. I read a lot of papers on saturday off medline. jury is out on prednisone. the acyclovir pills make me gag and retch (they are just too big and have ... edges. why!!!) Will see a doctor from my regular practice tomorrow and I think it will be best to switch antivirals to something smaller that doesn't make me barf and cry 5 times a day.

On vicodin. It is very painful. Vicodin is not always enough but I am going to try and keep it to that. alternating with tramadol.

It is around my waist in a stripe, on the left, i think t7-ish (lower ribs)
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I am done, sort of! at least, it shipped!

Cool huh?

I'm so very very very tired and brain-fried! I hope for a good long weekend with some swimming involved!
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My friend Beth was in my dream last night. we were spies. it was pride week in London and we were in full leather and discussing its cultural meanings. I could walk during most of that and then suddenly things shifted and i remembered I had a wheelchair and then i was in it for the rest of the dream and wondered how I could have walked so far in my spying job! We said wry things and slinked around. Things were very industrial.
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Made a n appointment for monday with my regular doc. I have the strange feeling like I'm ashamed and am going to disappoint him or everyone. I was doing so well?
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Things going super well but I am maybe overworking a bit. Allergy attacks in the night waking me up a lot. Last week or 3, ankles bad. I keep saying to the physical therapist they are bad but he has been acting kind of dismissive. Not sure what to think there. But I am not getting any .. advice or help I guess. I got the boots back out last week at some point when I decided i wanted to walk around the back patio and go up and down the stairs and do some laundry and stuff. Then I realized i was crying on the bus with anticipation that i could get home and put on the night splints to keep my ankles still and my feet flexed. (hard to lift up my foot to keep it with my toes not pointing down. My calves and ankles hurt like fury. Anyway, general knee/hand/ankle burning/inflammation feeling. I am worried a lot that this is like heading into flare up land. I need to change up something. Go into different mode. Ice ankles several times a day, wear the splints at night.

Frustrating as i want to go out , see mad max this weekend, go to the body of work performance next week, go to a party on thurs, go to amy schumer and then I have to fly to vancouver for work for a week. I am obviously not going to be able to last out the week. I will have to work out so that I don't go to the morning all-hands part, and just go to the afternoon bits. I don't know how I can manage it even with that. I also need better painkillers. I took a vicodin and it isn't even touching the pain.

did i bring this on? too much going out? walking around? working too long hours? I am doing all the PT. should i call my doctor? what is even the point in that. :(
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Reading Sea of Poppies from [Unknown site tag]al-zorra's review the other day. I really like it! Picking up the words from context but at some point I will just read straight through this glossary by the author: http://www.amitavghosh.com/chrestomathy.html. I may read everything I can find by him for the next couple of weeks.

Finished my re-read of North and South. I love it but also want to make fun of it. All that virtuousness and dying and agonizing neurotically! Also what a case of the Nice White Ladies. Then I felt like it wound me up to expect a huge mutual brain dump of Mr. What's his name and Margaret explaining everything to each other and their change of heart, but it was over in 2 pages. WTF, draw it out a little bit Gaskell! This does not mean I didn't love it and all the union things and the more or less sympathetic view of working class and poor people. BUT I have a big butt, Margaret's virtuous position is that if the masters and servants and working class just hang out a little bit more they will fight less and it won't matter that someone gets to be ridiculously wealthy and comfortable while other people are still super poor but may be lucky enough not to starve to death. Please. You over there in the mansion, tone it down a little and start a dinner buying coop for your factory workers and you, workers, read the bible more and ... drink slightly less and don't actually beat anyone up when you go on strike which you won't any more becasue the masters have explained why they can't give you a raise but are still in a mansion with a carriage and so on... No, that doesn't work does it?
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This was my day!

Notary for passport form
handed off noisebridge docs
got z. his package
put all the jars of coins in the garage ready to be coinstarred
got my data off an old laptop onto a 1TB hard drive
hired a guy to come move the fridge and the kids' bunk bed
mopped behind fridge
scrubbed out freezer
bought cleaning supplies to scrub freezer etc
cleaned out the kids' beds, which were nastily full of trash, dust, cables, old socks
gathered up 5 loads of laundry
mailed c. to ask her to come do all the laundry tomorrow
ordered new checks
paid bills
threw away a lot of papers
looked for a.'s keys (failed to find)
looked for m's wallet (also failed)
z. came over
the guy who is treasurer for NB came over
a. came back home from her mom's and i fed her dinner
emailed people about work thing, worked a bit

A very responsible day. I think I did too much scrubbing and walking. I laid down in between doing everything at least. The house still overwhelmingly has crap all over the place.

I am trying to look for some WisCon posts and reading a bit of the tweets but am just too domestically overloaded to feel engaged.

The fabulous bit of the day is that I did get a lot of my old data. WHEW.
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Listening to how he plays piano, blowing my mind. He makes glenn gould sound like a soulless prancing robot pony. I am listening again to beethoven sonata in d major (pastoral) which i played the hell out of in high school (painfully learning bar by bar so i know it really well to listen to) and rhodes is so brilliant with it that I am feeling embarrassed for my attempts to emotionally interpret it. crap! he plays bach so well i'm in tears! good stuff.

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