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very exciting. I had that poetry reading, then went out again yesterday afternoon to a thing happening in the street (well, in a "parklet") with people alternately ranting, event announcing, and poeting. by the time we were there and I got up to read, I was very tired. Saturday evening I went with the kids to a jazz age murder mystery game. Everyone's outfits were amazing!

I went out to lunch today by myself. Ramen place, looked unpromising from the outside but then it was extremely good.

It is good to be out of the house reliably!

Work OK. I feel more mentally "on" than in the past few weeks. My vision still gets bad by the end of the day. I get disheartened with exhaustion too, but mornings are good again.

Cat still slowly dying of kidney failure and not eating. we are hydrating her twice a day now. I am glad to cuddle her a bit more but it is stressful to deal with her peeing everywhere. Though, I can also do the laundry now more or less.

That's new and I dont' want to mess it up! It's been months since I have dared waste my ankles and knees on laundry doing!

Sink still leaking so I have a choice of doing the dishes with the leak or leaving the sink full of smelly dishes for another day. I think it will be towels and bowls under the sink and more laundry. Plumber may or may not come at 8am tomorrow. They are a bit unreliable. (both ones that I called.)

I am going to Paris in early November for work. Looking at maps, feeling excited. It will be an adventure in inaccessibility. But at least, only 5 co-workers, small team meeting, I hope low key. The office is in the 9th arrondissement on a broad street with curb cut sidewalks. Kind of between the opera houses and a lot of fancy department stores. It is very close to a covered passageway or two, sort of an early mall (Jouffrey and Panorama).

Paris is laid out in a clockwise spiral from the center with numbered districts and I read that they are often written in roman numbers on signs. IXeme! As I study the maps I am zooming in to see street level views. I have found some sort of feministy queer space with a zine library.

I got a nice extra bonus at work. I like this place. Bonus!!!!
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Overwhelmed a bit at how many people want to come see me or have lunch or coffee etc or hang out. This is a good problem to have!!!!! But it is still overwhelming.

Beach vacation fabulous, sometimes frustrating as I wanted to do so much more than I could, but on the other hand it was hilariously just like my life here, but with frequent swimming, a golf cart, and daily house cleaning. We all woke up and read books or played games or whatever (me reading with coffee on the beach) There was some swimming, I had to nag the kids to put on sunscreen and eat and drink and pick up after themselves, and I would go off to the little grocery store to get food (daily) which was a treat for me. More swimming. Naps. Kids wilting in heat, more computering. Then we would wander somewhere and eat dinner.

I laid around on the porch, in bed, or on the beach lounge chairs a lot, reading my Black Panther Party books and thinking and writing poetry. elaine brown book (fascinating! intense!) Huey Newton's Revolutionary Suicide, also very good, but I feel kind of impatient/mad with them both tbh. Reading Kathleen Cleaver now and also George Jackson's prison letters and next I will read Ho Chi Minh's Prison Diaries (can't believe i have never come across this) And a book of Fannie lou Hamer's speeches.

I think this heavy reading is something of a response to the super bad level of books I was reading while sick. Could not tolerate much so was re-reading kids' books and things that I thought were kind of brainless and silly.

On the trip I got to kayak a bit with kayaks that were *right* next to our beach access spot. Very conveniently. I had a moment of self indulgent crying in the middle of the bay by myself because i felt so free and in control and powerful and wished I could always feel that way and get around on my own power.

So my trick has to be (i resolved) to take that feeling and transpose it (as I mostly do already) to whatever way I'm getting around. I also felt like this in the golf cart as i miss driving around in my car very much. I wondered also if this was the last time I would even be able to kayak like that or if I can still pull it off sometimes. I think I am not at the end of kayaking (though it really hurts my hands and I can't do it for long). Most opportunities I would have to do it are giant excursions and since I can only do it for like 10 or 20 minutes and not hours, that doesn't work.

It has to be some situation where I can get to kayaks myself, without help (or much help) and there is no fuss and I can stop whenever needed without inconveniencing anyone.

Torso still sore and I have realized I don't fit into my pants anyway. Hrmmm. Need new pants.

New poem which I am pretty happy with, and will read it this Saturday in Berkeley.

D.'s cat is pretty clearly dying at this point. she is also peeing all over the bathroom floor. we came home to a lake of (days worth) of pee. i washed it a bunch of times but I don't think even time and scrubbing will help because it soaked into the grout around the tiles. Bathroom will smell like pee forever until tiles are ripped up and floor re-done. I am sad and thinking of other cats gone who i loved very much. And death in general. However I am also just tackling the amount of work it is to nurse her and clean after her (food and pee, luckily just in the bathroom) and am fussing and making sure she eats a little bit many times a day. Maybe it is possible for her to rally but if not then I want her to be fussed over and comfortable and happy. I am worrying that if she pees on the bed I will be in hell and we will have to buy a new mattress so am considering buying a waterproof thing for the bed(s). Must think about what then happens when she dies ie what to do with cat body. We do have some dirt in the side yard, I think sufficient if we get a big shovel. But I am not sure, and it is very hard dirt. We are all petting and cuddling her. She seems to be happy.

My friend S.'s talk was great tonight and I was so happy to go "OUT". Thought about how much I liked going to things like this and then going to dinner with people to talk more intensely. Now this is usually just not wise for me to do. I miss it. It made me extra happy that so many women showed up and were talking, and that B. was there and liked the book. We are not actually particular friends but I like and admire her a lot.

A. liked her first day of school. Moomin's is tomorrow. I so feel for him with the amount of homework that is about to descend. Last year was ridiculous. Way more work than I ever did in college. I'm glad he has so much knowledge cramming into his brain though. He is a thinker! It is that he needs a bit more space to think and freedom to discuss. Hope he will find it. He is intensely following this webcomic right now which I need to fire up and read all of on the ipad (too hard to read on computer screen)

So this is to say that nothing is easy but life is very nice right now.
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Well it's 5 weeks since the shingles started!!! I had 3 weeks out of work and then went back to work a little more each day. Then on Thursday this week, I was so exhausted I planned to take it specially easy, stop working at 1pm and then just check back in later in the afternoon/evening. Instead, that day I worked from 7am till 10pm. I went to lunch with my sister and was keeping an eye on things. Just as I was about to stop work around 3 or 4 it became clear it was going to have to be a sudden security release (which we call a chemspill). Holy crap!

I was crying by 5:30 and thinking I couldn't do it. My co-worker in France who knows more (in theory) was asleep and our boss was trying to ease off (after covering for me and Mr. France for weeks) and plus he has small children. My coworker here is fabulous but newer than I am at it, and I didn't know how to loop her in usefully (plus it was the end of her day and her kids are littles). Had a cup of tea, paid attention to my sister telling me to put down the computer for a minute, called my boss and got my 2nd wind pretty sure I could deal. And by that time I had all the strings gathered. Anyway, got it all knit together. We had a fix already and just had to make sure to coordinate a lot of people and the stuff they do. Builds take some time so it was important to kick them off as soon as possible. Put it all to bed with email to all the people who could kick it along over the night, and who would wake up to it in the morning. (Different shifts).

One interesting thing was that some people from other teams had also never been through the process. All good for us to get the practice. Sometimes people have to be encouraged to blurt out in public channels that they don't know, either (when i say i don't know) We also had funny conversations where 3 people would be asserting what they thought was true, and after 10 or 15 or more minutes we would slowly realize we were all wrong. (And why). Now, imagine our embarrassment but my realistic view is that most people in the real world would not realize they were (collectively or separately) wrong, or only after days or longer, and they wouldn't all admit it in front of each other or the rest of the teams. That is fantastic and it's how things get better. It's part of what I like about the culture there. I'm so proud to work with all these people.

I know not all of the company operates like that but most of the engineering facing people do. I love that. It's what I was looking for when i went to work there.

The extra bonuses are nice too.

Anyway, we turned it around in a day (26 hours was what I heard though that is not from the start of the realization there was a bad bug)

Did all that while still on a lot of gabapentin and dizzy and with blurred vision. (It gets worse towards end of day) I am about halfway tapered now from the 3600 mg/day dose.

I woke up to move it along more, and also to the news of my bonus and an extra bonus (because my pay is relatively low and they are catching me up till my next raise). My coworker is now my direct manager and our former boss is one line up. After the release went out there was nice email to @all (somewhat embarrassing as I can't help but think of all the fumbling mistakes I made and the time lost to all of us being unsure) Even with those things we did it and it was awesome. I'll take the praise (and pass it along and spread it out) and the raise! Nice to be recognized for being good at things. Being good in a pinch and making decisions and communicating across many teams is one of my good skills.

The only problem is I often then fall over physically. (See: getting shingles a day after my release shipped 5 weeks ago, or likely, a day or so before as it was the night at the opera when the pain started to kick up horribly)

Trying to learn to balance that. I did rest, look up, stretch, walk around, and eat reasonably, instead of spacing out, hyperfocusing for an entire day, and going on painkillers and coffee.

I also have this week coming up as comp time (since my being ill ate up all my PTO. I planned it back in May or June. Back to the beach, this time a whole week at the beach I liked best. With zond7 and both kids. I am very excited. I have been preparing and basically gathering things to pack for the last week. Today was spent slowly packing and doing laundry and lying down in between, which I am now capable of (zond7 mostly did the laundry but I did get one load of it) I also went and had tasty brunch down the street.

Yesterday my cab ride to the pain clinic was hard enough (sitting upright, seat belt) that I am nervous about the trip and the level of pain I will be in. zond7 got a free upgrade and will give it to me so I will be in business class or whatever they call it now. Or if I luck out he will get bumped up another level and i could end up in 1st class leaving him with the kids... he will sleep thru it all though... it's one of his traveling skills!

I have sprayed myself with coconut smelling suntan oil for bed just so i can feel like i'm already there.

Also very excited to see the kids who are both at the airport or on way back now with zond7 who went to meet them. But i am too tired to be all THAT excited.

I have a cotton blend smooth tank top and some sort of "yoga shorts" (from lululemon shop when i was in Whistler) to act as my bathing suit since I don't htink I can tolerate a regular suit yet.

Pics will come soon!
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OK how is this for an idea

Women's Creative Commons Culture Collective

It is mostly just an idea. But we can make it an idea with some sort of logo and manifesto and maybe templates for how to do it.

We spread the idea that we can offer people whose work we love some money for them to creative commons license that work. Rather than just wishing they would or asking them, we pay people. Like producers do to own a slice of an artist's work. Instead we pay to not own a slice or only to own the same slice as everyone else does. This will help us support each other, and our work, and also will save it from obscurity when we reserve it privately or publish it small scale because we want to get paid. Wanting to get paid is reasonable.

We could encourage each other to start saying right up front here's what it would cost to CC license this particular work (i think that is useful for visual art). But I am also going to try to make reasonable offers for this for writing and music i love and want to republish or want to be up on the net. I am just now doing this with 2 friends locally whose music I love, and who made a lovely song called Sisters, and I want to send it to EVERYONE..... especially right now.

As riot grrrl zine distros go... I have always considered the bulk of my work to just be out there and not under my control and I don't look for control of it. and that was our ethic. Now we have some formal structures to bring to bear that could be in good alignment with what we do anyway , that will let us do it better.

If you see ethical problems with this please discuss in comments or just tell me in email.
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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)
badgerbag: (Default)
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.
badgerbag: (Default)
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
badgerbag: (Default)
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)
badgerbag: (Default)
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!
badgerbag: (Default)
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.
badgerbag: (Default)
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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