Posts Tagged ‘cramps’

Russian gangsters and Japanese philosophers, side order of trauma

Life has been a curious mixture lately with a bit of horrible intense drama and a bit of slack and routine, cramps and whining and sleeping late; yet as usual, though I think I’ve been doing nothing, when I look back and count up, everything seems so full, so good, so luminous. I feel like I’m riding a giant wave, exhilarating, heady with power. I have worked long days with the good feeling of knowing what I’m doing, being useful. I’ve had some bad days physically, and emotionally, but also, kept my shit together, and have a brain full of ideas and books. What I love, I love to be thinking and getting new information, playing, talking, looking at things with my awareness open. This week despite emotional lows I am full of poetry… I am Having an Interesting Life I suppose…

I’m reading a fantastic book that the SkaRat recommended to me, called I Am A Cat, published in 1905. It’s so good! It’s hilarious & sad. The introduction laid out charmingly how the author- Soseke Natsume – was something of a failure in his career & as a scholar – his teaching career sort of crappy – his pittance of a scholarship to go to London – which he mostly failed at because he hid in his room for 2 years doing nothing but reading a ton of books. OMG… my kind of person. It is all the cat’s pomposity and charm as he observes Human Nature… the scribblings of his human & the funny (catty!) conversations of the slack-ass scholar’s obnoxious, pretentious, half-assed friends. I keep thinking that surely the different characters sketched out must be making fun of particular figures from some intellectual scene in Japan at the time. I love the translation… it flows beautifully and succeeds in being funny (or at times in conveying that something complicated has just happened that would be funnier in Japanese, which as a translator, I appreciate).

I am also still reading the Crypt0 book but it is lost in the house somewhere. It is very good. Though… has that annoying golly-gee drooling P0 Br0nson flavor to it where you just want to go, Jesus, get a room already with your dreamy-eyed hacker boys. At least it does make it clear – the homosocial nature of geek culture. It was odd to read of what’s his face staying in McC’s house where I worked too. I could picture it (not the specific physical setting – I mean that I know the atmosphere well.) It explained some things to me about the feeling of working there and what was expected – expectations that one would have a sort of salon of underemployed geniuses who do your domestic labor and settle in a bit like extended family – not that I don’t appreciate some of the judgements and sentiments of that – but a fate I would particularly like to avoid from either side of the equation, underemployed genius side, or benevolent salon-aspiring employer whose homoerotic bonding time period had sadly passed with N. and M. in the late 50s and early 60s. Honestly the more I contemplate that looming fate for myself the more I want to do it co-op style or not at all. Anyway, read Crypt0 book and besides the actual ideas, thought of the cultural phenomenon where you do what RS4 did and ride your collective exhilarating wave of thought & collaboration, but it is not permanent, like having a brilliant rock band, and you may never get that synergy again in life, which seems awfully melancholy. One would just refuse to believe it.

My other book has been Godfather of the Kremlin which ummm what’s his name in Brussels recommended during a moment when I felt like there was no possible conversational topic since I was not really part of their work meeting, did not share their wonky knowledge of their topic, and did not want to talk about myself, so I asked this obviously interesting person what unusually good books he woudl recommend. It was this one. I’m enjoying it greatly… it’s super business-politics wonky and explains Russia in the 90s and specifically how Berezovsky and other capitalist gangsters looted the country during privatization… the whole thing with the vouchers is so horribly fucked up.. and I was deadly fascinated with the aeroflot story – the textbook case of how to loot a company you don’t own.

The emotional stuff has been difficult, I have felt intense about my physical issues and had a lot more pain this week, and also, had some fights with Rook over things, which brought up more issues for me than I know how to rightly deal with myself. It kind of brought up old family issues for me. I have particular difficulties when people are angry with me. Oh, can’t I be a grownup and not think back on things that happened over 20 years ago — haunted by ghosts? I understand ghosts now. I am happy with myself- and yet – not. Also, trying to face the ways in which I am, actually, an asshole. That’s hard! Rook is also very stressed in his job and this is his last week. He quit! I’m so glad he did, and think it is the right decision. I find it fairly easy to talk about most of my emotional problems or issues or dilemmas but he does not and I did not realize what he has been through. I also felt like, last year, with my health problems, I wanted him to have more support, he did not, I did not know how to provide it, I had my own issues and needed emotional support which he didn’t really know how to do either. I hope that is clear, yet vague… I was caught up in my loop of cranky pain, hating myself for not being able to be happy and full of attention and cheerful – hot and sweaty – upset with life – thining that i have not done enough – and that if I am in pain now, I might be in more tomorrow, or unable to even get up and therefore i should use the last of my strength to clear the laundry off the floor and make the room less disgusting – in case I am stuck in it for days – and thus trying to chivvy everyone else around me suddenly to clean and wanting to cry at being The Nag and also full of resentment at needing or wanting help and/or at years when it was my job to do the housework – And the reality of it is that we screamed at each other at the top of our lungs about housework… I am embarrassed… and that spilled over into arguing about everything – but I need to talk about it. I think we made it up and had a good conversation. And for some people that might be normal and part of life, but for me, not. Meanwhile I thought lately that things were calmer with a person who I mortally offended last year causing endless drama and pain, and yet who will not attempt to work that out with me in any way. I wish we could just sit down and talk. Or, if not, then I wish she would step off, keep her emotional pain to herself, and not lay it on me and people close to me. For various reasons, we are peripheral to each others’ lives. And we have to accept that and negotiate some way to tolerate that. That’s what I think. I can do it if they can. But, terribly, I feel that unholy feeling that something is being projected as being part of me, when it is actually that other person. In other words, that they have major boundary problems and the exact problems they have, they are attributing to me, and that, somehow, while not my Fault really, is partly because of my own strong personality, stubbornness, and what is either my assholishness or shininess depending; so that I am horribly aware that if I were somehow Lesser of a person, there would not be a problem; yet because this other person and I are both rather Rocketship in our approach to life, they bristle and cannot tolerate and I bristle and cannot back down.

I admire an uncompromising, unconventional person who has a strong personality, very much, often even when they position themselves in opposition to me or they clearly hate me or find me annoying as all fuck. A person who insults me, I can often look past the insult, and see the information. I also have Theories about how as a society we need people who don’t have great filters and who ignore social cues. I am one of them… But you know, some people are more extreme than me…. I appreciate what is good about them. Holy crap though, I don’t mean anything bad. If I’m offending, just tell me to my face… would the world end?

Other people have their own childhood-families and their own ghosts and histories… I am aware… So I will think about my responses to anger (paralysis, trapped, need to flee… flight reflex… ) and try to be easy on a person who has their own baggage, that I might trigger. But, it is not fair to the person triggering it, not to tell them or talk to them. I can’t erase myself, and won’t go away. The things thrown at me or accusations — and the tangible results of that — bring up my own irrational painful issues; abandonment in general. Therefore it seems logical to attempt negotiation, even if that is crazy moon language. Though I would just plain like the chance to explain myself, I would also willingly shut up and listen, not say anything, go away and think about it, and try not to go on the defensive etc. I see no need to hash it all out, but to establish reasonable boundaries, and what are the actual goals of talking at all. I do not expect some buddy buddy outcome here. I just want not to cause suffering to a person, and not to suffer their emotional outbursts and the effect direct or indirect they have on my life. I feel okay that I am saying this on my blog, and that I called the person to make the direct and sincere offer of “let’s talk”.

Meanwhile. Moomin has had “camp” which is really just day care, at his old school from a year ago, and though I thought he would find it boring, he seems to be having fun playing that he is squirrels with Jos3lyn and Mar1s0l and their entourage, and in the corners of time, reading Nancy Drew books. I had a call that he bumped his head, during a meeting at work, and ducked out to hear him sobbing with ice on his head, could tell he was okay but rattled, went to get him, admired the enormous bump on his head as he ran around and begged me to stay just long enough to have the ice cream sundaes… and enjoyed seeing the kids myself that I used to play board games with at recess… J0anna and the others…. I thought of M4rcus who was the most hawk like of them all and full of scorn and who could almost beat me at chinese checkers. (I would not insult him by letting him win – he was too smart not to see through that and be offended.) I miss getting to be a little bit involved at the school.

It has been 100 degrees or over – unbearable in the house – I got home today from SF, got the old library books, picked up Moomin (braving the horrible hill) and took him to the library. Worked a bit – looked up books with him – the Pilot met us there with Peanut who wants to play computer games – Moomin found a Nancy Drew and several books with magic & dragons in them – Maybe I can make it a custom to go there with him in the evening one night a week and just sit and read. We all went to the new Japanese restaurant on Main and Rook met us there. It’s not really very good… alas… I would not go there again … H1guma is still best in town. We had a nice dinner though. Moomin is eating more foods. He gets into the idea that it is korean food (will eat kim bap, fried tofu, the pickled gourd or radish thingies, and the other day with me and Rook at the korean restaurant in mtn. view he wanted to learn to read hangul characters. I am happy he has an interest but mostly just happy he will now eat more than 10 different things, 5 of them fruit.

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Parties, and Eddie Izzard show

I showed up at the hotel early this afternoon and then realized there wasn’t a central place (yet) for me to camp and work. I had been somewhat frustrated at driving in traffic downtown, got lost & overtired. So I fled the hotel with cramps & no lunch; nearly got run over by a cab driver at the parking garage, screamed fuck you at the cab driver and then felt super embarrassed (Lindsay was in the cab and claimed she had feared for her life on the ride from the airport) and went to Zond-7′s where I laid down to work and was able to complain neurotically, ate a tuna sandwich with the new super nice organic produce delivery, chocolate, pecked at more work, nursed my cramps, and calmed the hell down. Back to the hotel this time in a cab (since it is a 10 dollar cab ride but like 50 bucks a microsecond to park in the hotel garage.) Hotel = superswank.

The parties rocked – I saw SJ – Squid – Skud – Jenijen – Jenny – Maria – Beth Kanter – omg everyone – there was a lot of hugging – we had our photos taken for new hi res pix on the site – I committed “bloggerface” – I felt mildly bewildered that everyone else was going off to special invite-only parties and I had not been asked to any – And yet not really that jealous at all – Just in the minor way that I would like to say no instead of feeling left out. Got over it. Felt a little like Nathan Barley myself for a few minutes there… I imagined myself shoving my computer into someone’s face and going look – “TRASHBAT.COCK”. this image kept me giggling – and kept me going. Hugged 20 million more people… met lovebabz and Lauren and Adrienne from Black Woman in Europe – gossiped some more with Beth – talked with Claudia who writes for El Tiempo – had a rum and coke – videoed erin and laurie and some others on the wii boxing. I picked up some emily’s list swag and also those free wine charms (oops! ones). I then hauled ass out of there to get another cab to just a few blocks away to see Eddie Izzard. I started out mildly hostile from the somewhat clumsy attempts at “local san francisco ” humor and because the callbacks (bits where he’d go back and reference an earlier bit) were also sort of klutzy and I felt un-trusting that they would not be dumb. But, then they weren’t, and they all built up and became really good. My other main criticism is that slapping creationism is kind of a cheap shot. It worked and it was funny but a combination of things meant that I could see the show as being a reach for a particular profundity by Izzard and it didn’t quite get there. But, close. If he had said the word “stromatolite” i might have forgiven a bit more. Go a little deeper please, on all of it… it would be funnier… even if not everyone gets it… I wondered if it was dumbed down on purpose to be accessible. I did like the sparta bits and hannibal bits… Did his god moments get near cosby’s god and noah? Or are my memories of cosby’s god and noah a bit rusty – because I thought they got near to it. So on the great side, Izzard swayed me around to his side and I was laughing my ass off by the last half of the show. He was doing like 5 levels of the “callbacks” at once until they were layered up very ridiculously and the traumatized squirrel survivor of the ark was helping feed skittles to the plague frogs and half the 10 commandments ended up from the squirrel. (10. when someone comes, run up a tree ) and giraffes were playing charades and then a velociraptor in a derby hat (who was really god) has a conversation with jesus about spiders having sex, and bjorn borg/boromir does a whole tennis match with new coached inter-thwock grunting sound effects and you can see all of it perfectly well though it’s imaginary, that’s really impressive!

Rook liked it but I think was reserved about the cheap shots. Zond-7 had the comedian’s critique which I will not attempt to explain. I liked it very much though I wanted more or better, somehow. More depth to outweigh the jokes.

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Verticality, mostly

I am taxed with explaining my physical state by various friends online and offline. There is not a lot to tell. I am still going up and down in both pain and functioning. The ups are steadily further up. The downs are still down, but not so bad, and haven’t been too lengthy. So, last week (or was it the week before?) I had a couple, three bad days in a row, using my wheelchair in the house, staying in bed most of the time, and barely leaving the house. I had other days, in the past few weeks, of minimal activity, but able to walk around the house for food, bathroom, doing the laundry, and driving to pick up Moomin. I had a cold for a week. So, I worked from home for two and a half weeks, figuring to save the walking energy for housework.

The “up” days were fabulous, where I could not only do all the housework, walking around the house free but felt perfectly able to do a couple of blocks on crutches.

On Sunday I drove across SF and then walked with crutches across a whole giant supermarket and half a parking lot. Then I managed to get down a sandy cliff trail (not very long, but still, would have been impossible a few months ago) with crutches and sliding on my butt. I laid on the beach. My legs were spasming horribly by that point. But, I made it back up with no functional problem, just pain. Then stairs! (You see how different this is, and how encouraging!) Then I collapsed and cried and stayed in bed, unable to get my leg to stop cramping, unable to deal even with the thought of getting in and out of the bathtub, much less any more stairs or driving. In the morning, I was mostly better, with residual pain and leg cramps. It was the cramp/pain of exhaustion much like I had last fall — but, last fall I had that complete exhaustion even if I walked to the bathroom, I guess because of the Lyrica and Baclofen and a general downhill slide.

I am mostly still in the wheelchair for any distances over one block, or if there are hills, or if I am going into a store or a bar or an event where there might be standing-in-line or standing at all.

I give myself little challenges like, “Park and walk to the ATM without crutches”. I feel a little unsteady when I come out of the car. The curb (or ramp) is hard and I want to hang onto something. In the house, I am more confident, and pop up from resting in bed to lope about. It is a good home rhythm, bed/reading/writing/working, up for 10 minutes to do things, down again, recharge, up again.

Right now I would like to be in the wheelchair around the house, but I don’t want to in front of my mom-in-law because it feels like she would judge me somehow negatively. It doesn’t make sense, but there it is. Most of the day, I used the chair, but I walked a lot around the office at work. I am in pain enough that I would like to get up and wash my face and get a drink. But, I am putting it off hoping the pain will be less in a little while. If I wait till I have to pee, then I can get up and do all those things in one trip and lie down again.

I’d put myself at maybe a 5 – 7 on the Kurtze Expanded Disability Status Scale, up from the really yucky time last fall when it was more like 6 – 8.3.

Have I been back to the doctor? No… I feel like I should, but I can’t bear it.

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Reading The Shadow Speaker, and an update on pain

I’m in the middle of The Shadow Speaker (by Nnedi Okorafor-Mbachu) and am digging it a lot. It feels more serious & weighty than Zahrah the Windseeker, which I also loved. I like its superpowered mutant kids & intersecting magic worlds & fantastic writing. I might be in love with Jaa the Red Queen warrior who has two husbands. Or the way that the politics of chocolate play into the story. Or all the strong women in the story… Or the way that Ejii starts to be able to see things in microscopic vision, seeing cells, and then atoms and molecules. No… wait… really I’m still in love with the plant-computers from Windseeker. & the city. I’m a sucker for skyscrapers made out of giant plants.

Today was long but good. I recognize all the feelings in myself of a long day where I have gotten too exhausted. I don’t know where my limits are physically. I’m afraid not to push myself, and afraid to push myself too far. It’s so exciting to feel stronger. I am still so relieved and happy about being undiagnosed, but those feelings are complicated and mixed with fear, anger, guilt, feeling both duped by the probably-wrong diagnosis and also responsible for it somehow.

I walked around a lot this afternoon but still needed the wheelchair. My right leg stiffens up. But the deep horrible pain is gone… what was that about? Exhaustion perhaps? The baclofen making my legs perceive walking to the bathroom like running a marathon? My right foot burns, and tingles, and prickles, and goes numb, but mostly does what I want it to do, except lift up all the way. The cramps in the bottoms of my feet are gone. My other foot buzzes and hurts, as do my hands, but that’s usual… So in short, aside from being physically weaker from the last couple of months of less activity, I’m back to around where I was all spring and summer.

I helped Z. by driving him around and packing boxes into my car again this morning and being moral support in general. Later back in Deadwood, I sat and threw away old papers today. Half a file cabinet drawer is now toast. Then I got Moomin (tiring, but not *impossible*) and helped him with his homework and did some dishes. It was very hard and I laid down in between doing things every few minutes. I took out a bunch of the trash, which I haven’t done for ages and ages because it is difficult from a wheelchair, but now I can do it on one crutch if I am slow and careful. I feel scared, proud, and brave lately as I walk around so much. Anyway, finally around 8pm I realized I was going to cry, and found my off switch and made Rook (who is sick with a cold) wake up and take over.

I’m trying to remind myself that my usual pattern is to go too far and backslide. I don’t want to do that. Also sometimes it isn’t my fault; it’s just impossible to tell how much is too much to do at once.

This morning while driving around and waiting for Zond-7 to come down the stairs with boxes, I thought about some of my translations from early last year, and I listened to cheery and moody 80s music in the glorious sunlight… and was very happy. I had that feeling like I was in my car and could just decide to drive off and keep driving, full of music and sunlight.

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PLS research project at Northwestern; gadget gossip

I’ve been immersing myself in mailing lists and bulletin boards and papers off Medline on HSP and PLS and ALS and spasticity, and neurological problems in general.

The Neuromuscular Disorders Program at Northwestern is doing a familial study for Primary Lateral Sclerosis or PLS. So me, my sister, my parents, and Rook will send them blood. They send a kit to us all and we take it to a phlebotomist and then presumably fed ex it back super quick.

Meanwhile, with all the reading I am realizing that just like things are with my legs, it’s like that for a bunch of people with PLS and their swallowing/speech. If it is PLS and not spastic paraparesis, it’s not like I’ll suddenly be unable to eat or talk but probably more intermittent or partial. So people talk about having difficulties for years, but more like having to do some occupational therapy and think carefully about swallowing, with some episodes of choking on food or drink, not like an on/off switch. That sounds grim still, but it’s comforting to hear from other people talking about their daily experiences.

Yesterday I spent mostly in bed, getting up a little around the house, in the wheelchair, then driving to SF. I went briefly into Djim’s place to drop off Moomin and so that the kids could see his very amazing rabbits with their whole set-up that’s like a rabbit castle. They liked it, and I was appreciative of being able to go in and see people even for a few minutes. Today was lovely. I woke up late-ish, could walk pretty well, drove everyone to work and school (only a few blocks so no biggie) then was able to get myself out of the car and met G. for tacos and then coffee. I just kind of wheeled up and down 24th Street taking photos in the sun, because I could. I liked the amazing hardware store there, the Workingman’s Hardware with the two super old guys surrounded by a very beautiful jumble of tools and pipes and stuff. G. gave me the update on her work and love life and I explained the confusing diagnosis stuff, mostly.

I met a guy at Ritual Roasters who had amazing interesting wheels called e-motion. They’re motorized and give a mechanical assist in whatever direction you’re pushing. They go on a regular manual wheelchair and make it every easy to maneuver. I could imagine being happy with these wheels, if I get to the point where I lose a lot of arm strength. The wheels are quite heavy, 30 pounds each, and battery life means they go for 8 miles. But as they’re quick release, you can still put the wheelchair into your car or even fold it with the wheels still on if you have an x-frame chair. It seems so much more intuitive to control a chair this way than with a joystick or steering wheel. Anyway, if I need something like this, I also think it might be far off in the future, and the technology will keep improving.

Really, it made my day to see these! The dude was so super nice to answer all my questions and to geek out with me. I seriously long for some other wheely people to hang with.

I got my super-cheap forearm crutches today, and they’re okay, easier than using 2 canes. They aren’t red like I wanted, but are a sort of gross pinky-red. Oh well. I was thinking I’ll write all over them with black sharpie and that’ll have a nice effect!

The new glittery folding crutches *might* come by Thursday but more likely, Friday or Saturday. I soooo need them for the BlogHer holiday party! ohhhh!

And my new Quickie Ti will come Dec. 18, they’re promising. I still have some regrets about not getting to try a Ti-Lite.

I stayed in the city because it was so sunny and beautiful… though I had meant to go home and go back to bed. My legs were painful but not impossible — I think the baclofen is helping. I upped it to 5mg, still below the dose they said to start on. It’s tempting to take it in the morning too. Either it wears off by the end of the day, or I just get tired (whether I stay in bed or not) and my legs are more spastic. The cramps in my calves, shins, and feet seem stronger than I’ve been used to. I think back and try to remember if it was this bad. Sometimes, yes it was, and I took a lot of very hot baths. My right leg being like this is I think what used to make my knee hurt and collapse – the muscles or tendons right next to my knee were spasming and very tight, and my knee wouldn’t work right. On the right side it is all about the ankle right now. When I think of wearing an ankle brace it sound soothing and nice, like it might keep my foot from hurting and dragging.

I still hope it’s HSP but I don’t see how anyone’s going to tell. Half the people on the mailing lists and BBSes seem to think their diagnosis is PLS when their doctor thinks it’s SP, and vice versa. It’s interesting how on all these medical net sites people identify themselves with their diagnosis – dx and date of dx. My date of dx is this year, though I’ve been living with whatever this is since at least 1993. So, people ID themselves with that date, which has the effect of giving them a certain authority of long experience and the assumption they must know a fair bit about all the research and symptom treatment & adaptations in life. The further back dates are hopeful as well, for me, so it’s nice to see someone posting “DX-ed with PLS in 1988″ since 20 years later they’re still having a nice life and posting long thoughtful emails to listservs.

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Roller coaster of pain and meds

I’m on a weird roller coaster this week. I take the Lyrica at night, and it takes away some of the nerve pain, while making me feel kind of stoned. Also, the cramps or spasticity in my legs increases, which is a different kind of pain – or, I just notice it more because the other pain lessens. In the morning, I’m still groggy from the drug. My arms and legs feel weaker and I don’t have any energy or oomph in me, physically or mentally. By afternoon, I’m alert and feel a bit better. The nerve pain starts to zoom back up, but it’s really nice to feel mentally and emotionally more “myself”. Towards evening I am dying to take another pill to squash the nerve pain.

It’s really weird, like different bits of myself are awake at different times.

I am doing nothing but minimum of caring for kids, lying in bed, and idly reading. I can’t seem to focus much. I react, and think, but the thoughts don’t gather up into action or resolve.

It feels best to just keep my leg very warm under the electric blanket. Then the aching is so much better.

Yesterday I decreased the meds by half (with an okay from the doctor).

So, I tried to back out of all my work commitments for the next week. That is stressful in itself, but better than letting people down while trying to insist I can do things that I can’t manage.

Instead I will just go to my doctor appointments and try to adjust to the meds. I’ll go to rehab, if I can drive or find someone to take me and decant me and the chair from the car & stuff me back in again.

The doctor wants me to increase the dosage steadily, which worries me. If I keep upping the dose every week, it’ll take me much longer to get used to it.

Already I notice I feel a bit more alert, and the tremor didn’t last more than 2 days. I am sort of stuttering, or unable to make words come out, sometimes, talking. That is uncomfortable but I figure that too might wear off.

Then, I am hoping I don’t have to be on this drug for too long. I wouldn’t have needed it for the pain I had a couple of weeks ago, which I could live with! And was living with!

There is a hard feeling of being a slacker, and giving up, just when I want to prove myself even more — the more I am in pain or disabled, the more I want to prove I can do anything and everything.

I also feel very out of control of things right now, and like I don’t know how to predict what is happening physically.

The Lyrica makes my arms and mid back weaker. That’s upsetting and difficult to face, and spikes up all the fears that I am having over the weird news that the spinal cord injury is so high up.

I worry about MS, I worry about work, I worry about daily life, about degenerative things, losing more arm function or strength, about driving with my leg like this. About whether the way I limp has hurt my injury further, and whether I’ve pushed myself too hard; about whether I am lying in bed too much and am not trying hard enough.

I’m really sorry I’m letting people down…

I hope I’m doing the right things.

Back to another mystery novel from the stack that Iris sent. It is about my mental speed right now & is very comforting. I liked the Peter Wimsey one, and the Michael Innes one called The Journeying Boy. But the Christianna Brand one, Green for Danger, was so poisonously sexist that I could barely stand to finish it; though so many of the characters were women and it was all set around nurses in a military hospital, none of the women ever talked to each other (or anyone else) about anything other than Catching a Man. I could slap Brand for the ending 2 pages which enraged me even through a warm layer of Lyrica.

That stuff, it’s like butter all around my leg nerves and the stripe of burning pain. When it starts to wear off, the return of the pain is super hard to bear, and I’m not sure that it’s not harder to have it come and go, than it is to just have it all the time. It’s like the ache of ice water, like my leg being filled up with ice and fire and needles pricking from the inside.

I stand up periodically hoping that it will help, and because I get sick of sitting and lying down. I can do it hanging onto a table or desk. I have to put a lot of weight on my arms, but that hurts too and feels scary. My right leg is noodly. I can move it, but it just folds up if weight goes on it. My left leg is not too great, but mostly can stay stiff. But if I try to bear weight on it while it’s bent, it also folds up.

That’s all. I have more to say about books, especially to make fun of the middle bits of Ga10m3 (which I liked much of) where happy collaborative love-commune space hippies conquer bad asteroidal pirates by the power of yelling loud. I cannot stop snickering and going “GAYome”. I think the author maybe will lose the “Make, Slashdot, and Wired” crowd he says is his imagined audience. I swear to god it’s like he’s describing Tiptree’s lesbian clone goat farm. But with the added hilarity of generations of hammock-weaving asteroidal villagers with no ambition to leave or travel — plus the space pirates. Join my blogome! Interstellar blogging will defeat the Empire! Our amazing microwave-radiating lolcats will drive you craaaaayzeeeeee!

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Mind-numbingly sick

I am missing the 2nd day of the fabulous geek conference because I got quite sick. I woke up feeling awful and it just got worse till I was barfing all over. My lips are all cracked, and I’m too weak and feverish to walk around the house much, though I managed not to camp out on the bathroom floor. It’s so scary how sick you can get, so quickly! I think of all the books I’ve read where the soldiers or travelers get dysentery and have to be tied onto their horses.

In the last few hours I have managed to drink half a ginger ale, so that’s hopeful.

Zond-7 had to leave early for the airport, Rook had to go in to work, Jo Spanglemonkey brought me the ginger ale and crackers. I’m half relieved to have Rook back home but also half annoyed in the feverish state of all sounds seeming twice as loud as usual. My body aches all over like I’ve been beaten up, and worse in my low back and gut from the cramps. And I’m VERY WHINY.

Mostly I slept, stared at the ceiling, laid on a heating pad, sobbed on the cats, and then in the afternoon read about halfway through the Xenogenesis trilogy. I tried to read an S.P. Somotow book but could not engage with it.

I’m so grateful that Rook is bringing me a hot drink and some Tylenol and is doing the laundry I couldn’t manage and is bleaching everything in the bathroom. What a day! I can’t help fretting about work. But it’s unrealistic to think I’ll be working tomorrow.

Okay, let’s be bold with this cup of broth, and hope I don’t barf it all up and the tylenol too.

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The nicest sort of day, with massage and relaxing

Lounging in bed all morning with books and computers and coffee and cookies and a person excellent to gaze at. I read a little poetry and finished Dishwasher Pete’s book, which I highly recommend. Getting a fabulous hour and a half massage and then sitting in hazelbroom’s sunny flowery kitchen with iced chai and fast wireless… Bagels in a relaxing way… a fabulous art gallery on the way back to the car (and managing to park within half a block of hazelbroom’s house and the bagel place and the art gallery, and walking to everything). Then lounging the rest of the afternoon with a million screamy but basically peaceful kids in the yard, everyone coming over, everything very social: Rook, Moomin, Nukie, Hamster, Peanut, Hamster’s parents, Zond-7, Minnie, her baby, and my uncle and his wife, and Peanut’s parents dropping in and out as well. It was really nice. We ate stuff from the Hole and played some board games.

I’m still glowing from the massage. The difference between no massage and massage is hurting all over, vs. hurting just basically in one place and a bit down my leg.

I find that what I need for massage is deep tissue stuff with a lot of trigger point work and myofascial release. T.W. has pointed out the TFL and ITB (tensor fasciae latae and iliotibial band) is super nasty on my right leg. When people work on it it hurts like hell but helps the pain in my knees and my whole leg… The muscle around the front of my hip is also super messed up. I also go a bit crazy with pain at the point on my calf where that same muscle or fascia or whatever, ends, just below the knee on the outside.

So I need to do more swimming and strengthen my stomach muscles more, but I also really want more massage since it helps so much with pain. My leg all cramps and seizes up, all the way down to my smaller toes. uncramping the front of the hip muscle, whatever that one is called, helps me walk more normally, because i can bring my right leg further forward. Well, blah blah blah. More massages!

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State of the legs and the soul underneath

My legs hurt. Both of them. It’s not much fun. Also, allergies and cramps hit me at the same time. I can walk around, but the constant level of pain is disheartening today. It’s a day where I just want to lie on my left side, waiting to sleep again, and maybe crying gently every once in a while while staring at the ceiling (or really, the bookshelf and wall to my left).

Instead, I got Moomin ready, fed him, made his lunch, took him to school, went back to bed a while to read work email and think, oversaw the (brief) moving of the piano by movers, went to Bad Moms Coffee which was very comforting and sanity-making in general (thanks homies!), came home hurtily (but nutritiously fed on plum pie and bacon) to collapse; did laundry and dishes instead, collapsed, cried a bit, got over it, worked, wrote, paid bills, talked with a contractor who I hope to poach from the Pilot and Acrobat to put screens on the windows which lack screens, (now it is 4pm in my account of the day) picked up Moomin which was more exhausting than I thought it would be (and he was screaming in pain as he had just ran neck first into a metal footrest on some kind of pole), chivvied him upstairs and to pack his homework up, yelled at some random male teacher that the door should be unlocked and had a giant argument with him; had a very polite spanglish conversation with the super nice custodian, Ishamel, who explained to me that a year and a half ago he filled out a work order to get the door repaired but no one has answered it or fixed the door; took Moomin home and sat up with him at the table while he did his homework, filled out forms and read all the handouts for school, took him to Squid‘s house where I tried to be vaguely social while lying on my left side in various places about the pool and house, and drove home … I made him chicken nuggets but they turned out to be accidentally “meatless chicken nuggets” which he rejected. I am happy Rook is home now to deal with the rest of the homework and to cook mac and cheese… perchance to shop.

My day home to work from bed did not quite go as I thought it would.

I miss Zond-7 something fierce.

I tried to walk in to pick up Moomin, but the door was locked and I cried again and went back to my car and got the wheelchair and went around to the back of the building. I begged the after-care person to let me call them and they could send him down to me, though it is against their policy. They might. Or, the person who was there today might. But the other people who work there might not, so I will have to ask, explain, beg, and/or bully at least two more people and probably more.

The piano movers could not stop talking about my FMINIST license plate and I wanted to kill them. Dinosaurish old dudes with hernia belts in place, har-haring and asking what all this feminist stuff is or what, is it the same thing as it was 25 years ago or what? I asked what they thought it meant, and when I got more har-haring, mildly mentioned equal rights as being only fair and sensible. They also mentioned to me that I was too young to be walking with a stick. Thanks guys. I did not explain. I was not feeling very able to deal with hearty jocular people.

I also wrote my letter to the entire city council about the lack of curb ramps on my street and how I have to go in the street to take Moomin to school. It is scary and exhausting at best during the heavy traffic of morning drop-off. It’s not going to be tolerable at all when it gets dark and rainy.

It is humiliating and wearing to have to explain over and over. I go into it feeling defensive and angry and ashamed, but usually am able to do some magic to replace those feelings with patient reasonableness. Today I could not for the life of me come up with any of my usual nice. Possibly the allergies and stuffy head on top of everything else… chain sneezing… unable to breathe out of my nose… logy…

So, it was a day like that.

Thank god for reading, the internet, and abstract thought, which distract me and fill me with happy enthusiasm as I escape this rotten rotten body and its very annoying lumbar vertebrae and the nerves that come thickly cording out of them, apparently “insulted” beyond bearing at the moment.

Also, I’m so happy I have milk and soda and a bunch of frozen dinners.

I am pinning my hopes on calling my friend T. who will come and give me a 2 hour butt-and-leg massage. (Not minding if I cry).

Or, maybe I will feel better in the morning and this is some sort of blip of pms-ing. The cramps could be messing with my muscles and setting off spasms, I guess. Oh why do I feel like such crap… I was fine yesterday…

It freaks me out when the other leg starts to hurt right down to my toes.

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The good bits of a long difficult day

I was in a pretty ill temper yesterday and today. But the good bits, in a list:

* The drive was nice, not too trafficky, in fact beautiful, and I got into that driving mood where everything seems perfect and the music is perfect. My leg hurt but it was bearable.
* I was possibly a reasonably diplomatic person despite my bad temper.
* Zond-7′s talk was great. Yeah I’m biased – but he is a brilliant speaker!
* A good talk on the way back about difficult things. He knows his way around an emotion or two or ten!
* And gave me a massage when I collapsed
* And I recovered from collapsing very well with a bath and an hour or two of lying down
* He got his plane even though I couldn’t manage to wake up to do the drive
* Though I had to go to the DMV, I was out of there within 40 minutes
* Though I had to pay a bunch of parking tickets late fees and registration that I swear I paid already online, on time, thank god I have the money to do it without it being a catastrophe.
* Hanging out with cdent was nice, as always
* Frozen yogurt with blueberries
* chatted with y. about yesterday’s heinosity
* D.g. gave an excellent talk; I love her calm authority and total braininess, and her methodical approach. she has pretty much thought of everything. I admire her…
* cdent said some cool speculationy ideas that pleasantly blew my mind
* though Moomin was in pain writhing around and moaning (gas?) I was able to calm him down and comfort him (again despite my own bad mood and considerable pain) and he fell asleep
* now I’m home and all cozy and about to have a lukewarm bubble bath to cool down from the evening heat
* Rook’s lovely writeup of his time at burning man which is so characteristic of his approach to everything; he is so calm, where I would have been a giant high-frequency-radio receiver and broadcaster with a new complication every hour and many Impressions. the really interesting thing is that his Impressions are no less complicated but they go into rpg setups and characters.

I have nothing good to say about the horrible cramps.

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