Posts Tagged ‘deadwood’

Facials! I don’t mean the dirty kind!

I think I’ve had a facial maybe 1 other time and it was one of those deals where you go “Oh, whatever” and abandon yourself and 60 bucks to the hands of fate. Salons and day spas are such a crapshoot. You know that some strangers are going to touch you for a while and some shit’s going to happen to you – but what? It is very like going to a whorehouse but for middle aged suburban ladies (as I’m sure many of you have noticed.)

So what happened to me in this huge fancy (yet cheap) new salon place in downtown Deadwood was that two women removed my socks and shoes and put me into a giant vibrating chair (see?) that also did percussion and kneading. They soaked my feet and hands. I thought the hand soaking bowls were nifty because they put smooth glass pebbles in them so your fingers don’t get bored. There was painting, and dabbing, and massaging with about 6 different kinds of scrubby stuff and lotions. They did all the dabbing and pincering of cuticles and filing early on. They pointed at the autoclaving disinfecting thing to reassure me about how modern they are & that flesh eating bacteria will not rot my fingers off my bones because of their cuticular invasions. There was hot stone massage. I noted they took the hot stones out of a crockpot. The hot stones might have been the best part, but I also liked the HOT LOTION. Dang! Then, a rather elaborate french manicure which is pale pink or clear nails with white tips. I don’t know how long thatall took. A long time.

I find that perhaps because language is a barrier, but perhaps also cultural difference of some kind, the Nail Salon ladies are alert to the slightest twitch and they overinterpret a bit. So, if you fidget, or scratch your nose, they assume no matter WHAT you say that you don’t like what they were doing and they should switch. Alas. An exaggeration of the Curse of the Just Right, where someone is massaging you, and you say “OMG, just right, don’t stop, keep doing exactly that” and they can’t HELP doing it different. Also true for sex. You might have noticed this in your own life.

For the facial part I was led back into the bowels of the building where there were candles and more mysterious Stations for things to Happen and then into a small room with more candles and all sorts of big dentists’ office looking machines. I was given a white cotton muumuu for purposes of neck and shoulder massage which made me feel nearly certain this would not be like my FIRST time I braved the “facial”. When THAT happened oh, it was awful. If you look at my skin, which I recommend you don’t, you will see I am acne-ridden, greasy, and dry-skinned all once. There are blackheads and whiteheads and sort of looming way underneath lurking incipient zits that cannot be stopped but are lined up on a zit conveyer belt waiting for their turn. So in the historic facial of days of yore, some lady whose language I did not speak *squeezed my zits* and sort of eviscerated them with a tiny post-hole digger. It was wildly painful. Afterwards my face was all raw. So anyway, THIS time was awesome. The dental machine turned out to be a high tech Vaporizer which gently puffed warm, perfect steamy air onto my face. A hot towel was wrapped around my head and then infinite strange hot faceclothings and more dabbing and scrubbing and face massage happened. IN between every stage I got hot towelled again. I lost count. First there was coarse grained scrubbing and then a towel. Then fine grained scrubbiness. Towel. Lotiony stuff. Towel. Tingly stuff. A sort of Mask thing which dried as I fell half asleep deliciously to some horrible new age flute music and a botched rendition on guitars of that one Satie piece that they always play in arty movies. Some shoulder and neck rubbing happened while I was lying there on my back with a warm fuzzy blanket over me. There was a point where there was tiny karate-chop percussive massaging all over my face, my sinuses, jaws, much better than you’d think.

So that was pretty awesome. My face does not feel or appear magically different — the point is more the hour of face massage. I don’t really care about the nail polish either (though it is rather splendid) since I will ruin it by tonight, but the good news on that front is whatever they use for polish does not asphyxiate me or them.

The bad part was they were flipping out the whole time about my crippledness (which they didn’t the first time I went there! dammit!) and just could not grasp that I could walk okay. Like, I walked in. With my backpack and crutches. And they saw me walk a little without the crutches. But, they would grab onto my arms while I was walking, or try to lift me up sort of from a chair — unbelieveable — and I had to explain 5 times that no one had dropped me off, Yes I could drive, no I did not have a special car for handicapped people — Yes I could work the pedals — no, no one was coming to get me — this from people who were looking at my feet and watching them move for an hour and a half and I repeat, who saw me walk in and walk around their salon. (My guess is that much like it was in China, Vietnam must not quite be there with popular awareness of ideas of independent living, despite some evidence to the contrary. I dealt with this as if quaaludes were my compass and anchor with a mild half-smile and eventually all the questions stopped as I dozed and sank into the awesome vibrating throne chair and let myself be buffed and squashed and oiled like a motherfucking empress of rome.

Rook drove to M4rin to pick up his mum from her spirituality Retreat & thence to the Assploratorium. They are on their way back. My plan is to feed them soup and hope to god my mom in law goes to bed early after her exhausting day. Armed with my 3 hours of hand, face, and foot massage and new age music I have another plan, which is, ANY time she brings up any crappy health thing or says anything that pisses me off I will Change the subject and ask her what her plan is for when she begins to lose mobility in her 4 story house that has stairs to get in the door, and also what she will do when she can’t drive safely any more, and what her blood pressure is, and I will also regale her with stories about my mom’s parents in their assisted living with expensive round the clock aides. That ought to fix her wagon. If that fails then I will remember some errands and leave for an hour or so.

I have worked on poety translator things, submitted 2 batches of poems to places, cooked, done laundry, on top of all that!

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Earth Day festival


useful ramp into deep gravel
Originally uploaded by Liz.

The festival was just perfect in the ways that Deadwood town festivals always are – small, well organized, lovely, full of children, with music & food & crafts & art displays & oozing with good intentions & civic pride, sponsored by C4rgill and such companies with mild creepiness. (Their “we lurve nature” brochures remind me of the PR spinmater in “The Fountain at the Center of the World”.)

A band called the Banana Slugs played funk, rock, zydeco, catchy tunes with funny lyrics about the Bay and marine life. You have not lived till you have eaten some PTA chick’s homemade turkey sandwich in your new pink tshirt that has a whale wrestling a giant squid, while the crowd around you roars the refrain “Estuary! Salty and fresh” and small children shake their butts on the lawn. Then everyone lined up to go in canoes, and pet some sharks and eels, and sieve mud to find the tiny worms and shells, and there was a slide show somehow connected to Al Gore’s global warming thing which I did not see the slide show but apparently there was stuff about melting glaciers.

My heart sank when we drove into the blocked-off parking lot next to the cluster of low buildings. For the parking lot was gravel and all around the buildings was gravel. There were some concrete paths half buried in gravel and some wooden walkways. But, I was in for hours of trying to move around. I had not called to check about access. Still, I’m glad I went and didn’t miss it.

I had some moments that were nice where I was like “yay family having fun” but, I could not get to most of the places where Rook and Moomin were, at the times they were there, because of access and crowds (for example there was no way i was going to get to pet a shark with all those people shoving me… bags in the face…people leaning on my chair… I ran over a lot of toes in that aquarium building and then just went to its sidelines in complete disgust) And, so I had a lot of those “parked” moments where you get to sort of watch other people having a nice time and you experience a sort of disabled-person compersion as you enjoy their enjoyment (which is halfway just parental enjoyment of kids doing their thing). I had a nice moment when I wheeled up onto the pier and managed it competently and wheelied over the rough patches and the wind wuthered through my hair and jacket. (Estuary! Salty and fresh!) I felt very alone-in-a-crowd.

Three separate people were especially offensive. I guess I have not been going out to unfamilar places/crowds that often, because it felt like it’s been a while. One woman blessed my heart. Another one said kindly that she “just wanted me to know that she thought I was very brave”. A totally scary tanning-booth possibly-drunk lady with her grown up son with her (looking like he was gonna die of embarrassment) caught my arm as I wheeled past and said “You know, it’s good that you come out. You’re making SUCH A DIFFERENCE” and something else I have mercifully forgotten, but it was so dripping with grossness that I sat there and stared at her with my mouth open and had no witty retort.

A lady tried to push me at one point and I could see her recognition that things were rough for me though she could not figure out why, so I went back after a while and asked the volunteers if someone might sweep the concrete walks free of gravel. That helped. And I went over the giant pit of gravel in the photo here (so tantalizingly leading to a ramp) a few times (in fact, too many times) popping wheelies with every step (step??) so that my front wheels would not sink down.

The bathroom was far, far across a sort of narrow corridor of gravel and logs and there was just no way. If I had brought both my crutches and not just one, maybe.

The nicest bit, besides Moomin petting a shark, was that we ran into my ex girlfriend Nada and her partner & their two kids! It was so, so, good to see Nada and I clutched onto her and felt like crying somehow as I had been feeling very alone in the crowd split off from everyone. Then, it turns out, I had completely forgotten that Nada’s partner is a neurologist at Staffnord, a resident. I mean I knew she was something medical but have not seen her for a long time… since maybe Hurricane Katrina or so… as she was always working so I only really hung out with Nada. Well, she pretty much started banging my kneecaps right there and drool was coming out of her as she looked me up and down like she was a dog and I was a giant hunk of meat and said things like “Goddamn it I’ll do your lumbar puncture myself, it’s easy as pie.” “Uhhh can I have a valium for that, because, terror and pain.” She said the Movement D1sorders clinic had just or was just hiring a ton of awesome people and was all overhauled and I should send her all my documents and history and MRIs and junk. As she asked me questions and I tried to explain the whole crappy story it was a bit intense for me. I admitted, I ahve been avoiding going back to my neuromancer because I feel like he fucked up and misdiagnosed me, though it happens to everyone really – but mostly I dont’ want to go because I just couldn’t cope, emotionally, with more doctoring and tests and running around. Besides, I am getting better or at least not worse. I also confessed (at her questions) that indeed lumbar punctures have been mentioned more than once and when they do I have just not gone back because I am scared of it. She talked of the plexus and de- and re-myelination. And that, in some ways, it is not going to matter what the diagnosis is as long as it is not an immediatly terrifying one like a tumor or ALS which it isn’t, and the real thing to pay attention to is, what feels better, and if I am doing better slowly, then, I am doing things right. (That is how I also feel, and I think it is true.) I felt very guilty over not going to phys therapy regularly or swimming. (So much like trying to explain to the dentist why you don’t floss enough, but worse.) At one point I was really overcome with her kindness and almost cried, but I caught it. “I’ve tried to manage things as best I can, and mostly do, but, it’s hard to manage it right, when you’re in it.” It was kind of her to say she understood.

I made everyone leave because of my exhaustion and having to pee. My legs were so stiff, I think from the effort of the wheelies, low back hurting a lot. I wish I could sleep, or cry and be comforted, or both. I guess I need to go back to the doctor and then go to Staffnord and start all this mess up again.

Rook fell asleep immediately when we returned. I read E. Nesbit and lay in bed doing slow leg-therapy things. We have a role playing game in half an hour, can i pull myself together to sit up and be social?

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The pace of visitors

Visitors for the past few days which makes you attempt to see your life through someone’s else’s view and of course that’s a funny balance because visitors change the way you do things. I notice over time that Rook and I have our standard “Joys of Deadwood City” tour we offer to visitors; the walkable downtown, the handy Food Hole grocery which means you can stroll to it once a day and have nice fruit and bread and things like that; Buck’s; the cafe. There is not really much else! I’m not up for H4ndley Rock, and Bore “Island” is really just a marshy landfill which is only charming if you like the remnants of industrial waste and highway and undiscriminating waterfowl who need a place to stop over on the way to Venezuela. A person who had their shit together might go to the Little F0x or the big F0x theater.

After those limited Joys are sampled it is a matter of lather, rinse, repeat. Sleeping, reading, lounging on couches, baking, and board games punctuate the suburban bliss. Abundant parking may also be savored by the urban visitor, as a sort of grace note in the symphony of slack.

Anyway! I think Zond-7′s mum and nephew are over their jet lag and eager to move on to the Big City, tomorrow! His nephew has also made friends with bank tellers, homeless people, record and game store owners, the supermarket checkers, and the “Buddhist” cult around the corner in the old Salvation Army church: being a gregarious soul and inquisitive about gang colors, pancakes, and other Americana.

Speaking of gang colors! I noticed for the very first time in Deadwood, some blue 13 sureño tags – big and bold right under the J3fferson overpass! Holy crap! I was pretty shocked and wonder if it will have some repercussions. For 8 years I have lived here and it is all XIV all the time. I don’t know dick about it all, other than noticing the colors & symbols and decoding a little bit. And… oddly… feeling a bit patriotic of the norteños since I do live here. Anyway, the main thing is that I worry that this means new conflict. Though the tags mostly seem to be kids dabbling or fooling around, in this neighborhood.

I have cut Zond-7′s hair, and his nephew’s which was hacked bald in places since he is the sort of person to let small children cut his hair (and who is going Out for a Run about once an hour, in the rain, on the edge of manic) and we have lounged and loafed and walked (rolled) and eaten enormous brunch. Zond-7′s mother is hemming his pants.

Last night most of us went to Squid’s place with Indian food. Iz told me about Cambodia, and Moomin read Polly and the Pirates which I swiped from him later and which was EXCELLENT, and SJ was there. I was exhausted (from having take his mum to the mall which I am still not sure if she wanted to do that for an authentic American experience or she just wanted to buy things). The mall trip was hilarious. I think from having raised a couple of butchy punky superfeminist strongminded daughters she knew just how to manage me so that I didn’t mind. I would balk, suggest leaving the store, act disinterested and attempt to direct her to things she might want, or say harrumphily that I refuse to even look at clothing with fake pockets… and where my mom would argue the point and despair, she just blinked slightly, nodded in understanding, suggested the boys’ department, rifled through it, swept me to a completely different area, and like a kindly librarian matching me with the Book of Gold she found me a magic selection of suit jackets with functional pockets, sleek with no frilly crap, including *the perfect jacket of my dreams* and corresponding white dress shirt. In it, I scare myself, I’m so handsome and sleek and foppish. So, that’s how I went to the mall for the first time in ages, and came out feeling triumphant.

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Crosslinky thoughts

About intersections of disability, body image, gender, and family, I guest blogged over here on Body Impolitic: Our Big Old Crippled Crazy Bodies Are Political.

And there’s a flippant book review on FeministSF of a sort of feminist action-cryptography-mysticism-conspiracy-novel from 1988, The Eight by Katharine Neville, at The pleasure of retro.

I’m enjoying io9 a lot. It got an instant community of good commenters, and it’s got archives back to last October, so I haven’t been bored on the internet for a while now.

I have been working on walking quietly around the house, and my enormous detailed obsessive bundle of information about The Orphan’s Tales including a high level summary, a more detailed summary of In the Night Garden, and a glossary of characters and place names. (You can follow that link; no spoilers there, but the links from it can be spoilery.)

I’m having another quiet weekend mostly puttering in the house and resting and reading in bed. Saturday we had a Dragons game with action figures and a battle. Sunday I helped Moomin with his diorama and his book report on a book about a time machine and then in SF (dinner at Emmy’s with Zond-7 and then helplessly watching him melt down with stress for a while, then we Planned Things and both felt better.) Today was very relaxed with more reading and computing and then one of those very harmonious 2 hour long conversations over chicken tacos and while driving… about class, books, SF, Scalzi, Orphan’s Tales, Potter fanfic, our families, childhood memories, the nature of storytelling and anecdote. We’re all back in Deadwood now; Moomin is about to give us a practice session of his oral report on the time machine book. We have all watched a YouTube video with Korean breakdancers…. thus goes my life…

My only complaint is that it’s cold, rainy, my legs hurt, my knees are being horrible I think from the increased amount of walking on my less-spastic-but-weakened legs. Spring, please come!

OH… and I’m reading on Friday at Queer Open Mic at the Three Dollar Bill Cafe, in the LGBT Center in SF, with several other readers from Can I Sit With You? including international glam queen blogstar SJ of I, Asshole, and then the open mic itself, which is always entertaining and thought-provoking. If you’re around, do please come to it! And… buy the book, which make a very good present for older elementary school kids & up, if you don’t mind them reading some swears.

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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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The more prosaic diary of what’s up

So I decided I’ll go to UCSF to their ALS clinic, and get a 2nd opinion or workup or whatever from them. They can use all the same tests and MRIs and stuff. I might just have to have an EMG – sounds like a somatosensory evoked potential is no picnic, but something like that will get done.

I walked a bit again today with crutches, and sat up a good part of the day. Went out to lunch with and Jo (I’m completely obsessed with this pho place in Deadwood and its totally delicious noodle soup) and then came back here to talk poetry with D. (lying on couch with an electric blanket) and THEN Rook and Moomin and I went to Jo’s house to do a little minor clearing up and moral support which I hope helped. It is a dreary thing to do alone, moving, even when you’re not having that feeling of salvaging from the wreck.

Rook took kids to our house, and then when Ep’s husband came over around 5 to drive Jo around town, they dropped her son and Eliz. off at my house too. Everyone played super peacefully with rocket launchers and “guns” that were actually my crutches, & then in elaborate gladatorial games with the tiny remote controlled cars from China, MC-ed by Eliz and fenced off by a coliseum of couch pillows. I watched from bed.

I thought I would miss the concert but then just in time all the kids got picked up. WHEW.

And what a fabulous feeling with my lap blanket tucked in around me, whooshing down the street in my new ultralight wheelchair, down the BRAND NEW RAMPS.

I’m very lucky…

It was all a bit exhausting, but I mostly stayed very warm. I’m hurting now despite baclofen. My left leg is spasming a lot tonight, mostly the calf and foot.

I have to say, that the feeling of trouble swallowing is more intense the last few days, and I never know if it is just in my mind… or if it is really worse. I guess if it gets really-really worse, I’ll know it. I have had increasing trouble in the past years with swallowing when I ‘m lying down or on my back. For example if getting a massage I have to turn on my side to swallow. I guess that is not quite normal? And much of the time I have to sort of think about swallowing food. I do it by leaning forward just a bit and stretching out my neck. Is that …. well, I know it must be odd, because I don’t remember ever thinking about it or noticing it before a couple of years ago. Can I just confess… I didn’t mention that to the neurologist even when he asked about swallowing difficulties.

I do think about it, and figure I will do a quick project to record myself reading more of my poems.

I haven’t really wanted to talk about that to anyone because it feels like it would make it more real and it makes me much too afraid.

They have programs where you record yourself saying like 1500 common words and phrases and then a speech synthesizer thingie digitizes it and can construct what you want to say from that. The software to do this has different moods so you can inflect things to be angry or happy or whatever.

Remind me to record some key phrases like “Shut the fuck up” and “OH GOD! HARDER!”

Hahaha!

On the other hand I am not convinced it’s not all in my head and I don’t mean in the “upper motor neurons in brainstem” way of being all in my head.

You know the feeling of when your throat gets tight because you are super emotional? Like that.

Pilot and I had a nice talk yesterday and she filled me in on the acromegaly stuff which went along with the tumor. I didn’t realize that bit of it. She’s having a rough time over there, which I knew but didn’t really grasp. It’s funny to think of us in our next door houses, struggling. And I want to offer more solidarity in some way.

Meanwhile, I continue being absurdly happy. I get frustrated and scared and especially tired of being in bed. Not that I don’t love to be in bed. It’s just that when I have impulses to do something else, but can’t muster up the stamina, and bed is warm, and cold hurts like helll.

Rook’s parents are coming on Thursday!

I need to make a bunch more appointments and deal with medical things and faxing and insurance! And get food for xmas dinner, order a turkey or whatever! I feel like baking bread and cleaning the house! Instead I laid in bed all evening and watched “Hail the Conquering Hero” with Rook.

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The Spangleplex, brimming with potential

I went with Jo Spanglemonkey to see the new Spangleplex, lease just signed and payment paid! I see why she decided on the spot to rent it. Both of us are mega familiar with the rental and house-buying options in Deadwood through many years of renting and then chumming around in the easy-rider luxury-car Ford Crown Victorias of pantsuited realtors. It is a high density neighborhood over by Sidewood, a couple of blocks from the 7-11 and Wegman’s, therefore also it must be walkable to the slightly manky Starf*cks. The neighborhood read as perfectly fine, like mine, with likelihood high of many kids on bikes and moms with strollers.

There’s a garage! and very huge living room and kitchen. You could fit like 3 kitchen tables into there. It’ll make a perfect place to set up every kind of art and craft thing. I picture Eliz with a sewing desk in there, and Jo’s painting stuff. The driveway has this sort of nook in front with rosebushes that would make an awesome porch and there is a nasty old plastic table with umbrella that I’d put out there for porchtastic lounging and people-watching.

In the garage taped to the inside of the cupboard on a yellowing bit of notebook paper there was a chart showing the location and variety name of all the rosebushes. It is totally the house of some dead old lady who went with the 70s wood panelling and the yellow trippy-pattern linoleum and as we stared at the chart in her years-old handwriting I extrapolated the estate sale that probably happened in that house about 10 years ago when she died, the porcelain figures and lace doilies, the wooden wall plaques with jesus-sayings and sunsets, the 70s cookbooks and handfuls of plastic costume jewelry beaded necklaces that come with old lady estate sales in these parts. And perhaps a big bible-sized cassette tape recorder that broke in 1985 and was never thrown away. Because of the Imaginary Rose Lady, I could totally love the Spangleplex.

There is a duplex neighbor lady with dogs, good for potential Eliz. and Sophie dogsitting jobs.

And because it is all so huge I picture some way for Eliz’s outrage and ire to be cooled by having some importantly private space of her own demarcated somehow.

I proposed that Jo hold monthly Art/Craft salon nights at her house. Also we should have either croquet or bocce on the tiny front lawn. You see how I am very willing to poke my friends up to be hosts, while I never invite them over for dinner myself. Sheer evil on wheels!

The hard part if it were me would be the weeknights without kids, alone in the house with insomnia and internet. But, as Jo goes to bed at 9pm without fail, she’s seeing it more as an opportunity to watch the Netflix she wants to before crashing out undisturbed.

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Diagnosis takes forEVER

My mood is fluctuating a lot as I deal with pain and weirdly variable ability levels. Sometimes I get up from bed and go “Ooo, I can walk to the other room and can do the laundry and stuff!” and then I wonder if other times I have just mis-read everything, or made it all up, or am completely bonkers. But no, pretty rapidly my leg starts to hurt like fuck again and I have to lie down. I’m still at about a 6.0 – 7.0 on the Kurtzke Scale.

Both legs are giving me trouble but the right leg is so much worse that I mostly focus on that.

Realizing that a large part of the pain is spasticity continues to be very helpful. Warmth helps a lot. If I keep my feet and legs very warm – under electric blanket, or in 2 pairs of long underwear and in my furry mukluks, then a giant chain of painful spasms is less likely to happen.

furry mukluks

This also explains some things from Physical Therapies Past. When the therapist would do passive stretching and traction and it felt great, we both interpreted it as taking pressure off the spine. But the machine to do spine traction alone didn’t help and in fact drove me nuts because i had to lie still and sort of strapped down and my legs hurt. I have been getting people to do more passive stretching along with a little massage. That helps. I find that after a bit of stretching if I just lie there without moving my leg at all, it stays quiet. If I stay in bed especially on my left side, then I can get up and walk around and the spasms aren’t so bad. (Until they just are again, and I don’t know why.)

So my PT was mostly about trying to make my muscles stronger, but they are already hellishly strong and also they aren’t paralyzed. Instead they spasm so hard that they hurt, and then I have trouble moving because they’re stiff and spasming and they resist. And moving in one direction to stretch one set hurts the other side that’s contracting. Something like that, I guess. And the PT I need to be having would be about trying to reduce muscle tone – not to improve it.

In short my usual feeling that I could do ANYTHING is probably true. I could run from a bear… or kick your ass… but then I’d fall over afterwards and pay some hideous consequences.

I had another MRI today, this time of my thoracic spine. I think the point of this one is to double triple check that I don’t have some kind of giant spine problem or tumor in there. My neck had some problems at C4-5, C5-6, and C6-7 (herniated discs and other stuff, but relatively minor). Especially at C4-5 where there is a bulge and some degeneration and moderate foraminal stenosis. That is the sort of stuff they expected to see in my lumbar spine, but didn’t. So, that stuff could explain the problems in my arms and hands and neck, I guess. But again those problems are like nothing compared to my leg, obviously…

It is the difference between “ow, my neck is bothering me a little” and “holy fuck I can’t walk and want to cry and am sort of thrashing around constantly from pain”.

Anyway, just now I took 2.5 mg of baclofen. I am very happy the 10mg tablets come in bitable form, so I can try a very low dose.

I found a usefully metaphor-laden description of spasticity though it is mostly for CP patients, it seems quite useful and helps me understand a bit. I figure I’ll research nerves, muscles, and this GABA stuff and write up whatever I figure out in a little report so I can be sure that I understand it clearly.

What these dudes say about low dose oral baclofen sounds sensible and non-scary to me. So that’s what I’m going to try. I’ll start with 2.5mg of baclofen once a day in the evening. Well, today at 5:30 because I was a bit desperate. I’ll try it for as long as I can deal with it, and see if that has any effect.

Right now I just feel a tiny bit more cheery and relaxed. My leg does feel less tight. As I try to move around it feels odd. That’s all I can say. Maybe a bath will help…

Here’s another random link to a description of PLS.

The disorder usually begins in the legs but can begin in the upper body or bulbar (speech and swallowing) muscles. The age of onset is generally between 35 and 66 years of age, with a median age of 50.

The incidence rate for PLS is difficult to determine. One study puts it at 500 individuals in the United States. However, many researchers feel this is an underestimate and the actual incident rate is closer to 2,000. The issue is further complicated by the fact that a good portion of people initially diagnosed with PLS actually have HSP or ALS. Most researchers indicate waiting about five years to observe symptom development before being confident of the diagnosis.

Note that bit about the five years to really know what you’re talking about with the diagnosis. Grrrrrreat. I know I have to get used to being vaguely diagnosed. I ride with it okay sometimes, and then have moments where it’s very hard. I just want to know… WHAT IS IT!

This part kind of made me laugh. Emotional lability, much?

Other symptoms that commonly occur include hyperactive reflexes, muscle spasms, presence of Babinkski’s signs, muscles spasms and pain. Some individuals report having emotional lability.

Dammit, don’t tell me I’m a neurotic poet because of this weird neurological condition! I’m just a neurotic poet! And I just laugh all the time when I’m mad or frustrated because, uh…

Oh well.

Emotional incontinence! Really… it’s funny…

How handy for explaining why I’m cracking up at bad poetry readings or meetings at work. No, really, officer! It’s my rare neurological disorder!

It could just be spastic paraplegia of some kind, maybe the wonderfully-named “Apparently Sporadic Spastic Paraplegia”. I could be a mutant!

This part is also quite true for me:

Many people find the tightness in their muscles worsens when they are angry, stressed, or upset. This may make it more difficult to walk and speak. It is unknown exactly how emotions affect muscle tone, but it may involve adrenalin levels. Most people also report increased stiffness in cold weather.

And about the uncertainty of diagnosis, this bit sums it all up very well:

Muscle spasticity and weakness can also be caused by other conditions including (but not limited to) Primary Lateral Sclerosis, spinal cord injury or tumors, cerebral palsy, multiple sclerosis, amyotrophic lateral sclerosis, vitamin absorption, and thoracic spine herniated disks.

Thus the MRI of my thoracic spine, where you’d think that any of my doctors would have started. My neuromancer thinks MS is unlikely & same with ALS because I would probably have more muscle atrophy or wasting. But neither of those are for sure ruled out.

Since it’s the same thing (from the feel of it) as it was from approx. 92-99, it seems doubtful that it’s ALS… since I’m not dead of pneumonia:

Upper motor neuron degeneration causes muscle spasticity and weakness in the voluntary muscles. It is disabling, but not terminal. Lower motor neuron degeneration causes muscle wasting, which eventually affects the respiratory system and leads to death.

That’s a comfort.

Meanwhile, life is pretty sweet. I get frustrated, especially with pain and times when mobility is hard, as well as with my usual state of fury with myself that I’m not productive enough. I’m driving (we’ll see, on the baclofen) and am spending most of my time in Deadwood City, but about 1-2 nights a week in SF with Zond-7. I spend most of the day in bed, getting up for small forays about the house. On a good day I do some light housework. (I can assess how mobile I am based on laundry: am I doing laundry at all? from the wheelchair? can I stand up to get stuff out of the dryer or do I have to ask for help for that part?) Other people are often in bed with me with computers or books, which is cosy. (Rook just brought me potstickers with sauce and some cranberry-grape juice laced with pomegranate! thanks Rook!) Periodically I beg for stretching or massages or I burst into tears and begin whining, but I am just as likely to be giggling, flirting, all on fire with ideas or cussing at some feminist controversy on the net or writing like a maniac or devouring a fabulous science fiction novel. This last week I’ve been able to drive, and if i can park *right* outside of a place then I can crutch in, say, to a restaurant, though I have to be sure I don’t have to stand up waiting or ordering and also that I won’t be wandering around looking for the bathroom. So mostly I stick to the wheelchair. Wheeling in the house is easier, but I’m doing some walking on crutches, cane, or just plain legs on the theory that it might help and if I can, I should, even if it hurts.

I need support from somewhere other than all you fuckin’ walkies, nice as you are. So I’m going to go lurk on PLS-Friends and the PLS corner on ALS Forums.

Mostly I’m clinging to the thought that I’m a mutant and have mere spastic paraplegia (SP) or Apparent Sporadic Spasticity (ASS) (no, not really; they made it ASSP, but I’m not fooled by that lame acronym-fu). That would explain where I’m at now, while warding off the scary future-swallowing-speaking-and-arm involvement. Maybe I’ll just make up my mind to believe that I’ve got ASS.

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Sappy gratitude for life, analysis of motherhood

Today I felt an overwhelming gladness that I could do so much and that life was so full. I woke up curled up with Moomin and Zond-7, had coffee while I finished reading Tooth and Claw – which was excellent and you should read it if you love victorian novels (or regency romances) and dragons or even if you don’t – And then did some cleaning up (not so much after Zond-7 as after me since I’d been around a lot and I am a huge slob with the laundry and dirty kleenexes, qtips and towels and dishes and coffee cups and books and earplugs strewn everywhere next to the bed, along with the entire contents of my backpack). We drove off to leave Zond-7 at his bike and to go off for errands while Moomin and I went to Dog-Eared Books (I bought Moomin a TinTin, an Asterix, and one of those books about a dog and a cat who journey for 1000 miles, and myself a used biography of Mary Wollstonecraft) then all met for smoothies and coffee at Sidewalk Juice. Back in Deadwood, I puttered, bustled, did laundry, unpacked, washed dishes, strewed more things from my backpack around so that I’d feel at home, like a rat, and nibbled some crackers.

Rook and I and Moomin took off to Squid’s house, where I was for the first time able to get around walking well enough to tour the whole house. If I had my druthers I would be better enough to go on bikes and trampolines and seesaws and sit on the floor to play. Still, I could get up and down as I pleased and go up the steps without barely thinking of it – just limping a little instead of painfully hauling myself along. And I could watch the kids playing. I do still tend to space out, now that I’m out of the habit of playing with the kids because I physically can’t or have been in too much pain to deal with them. Then, M. called to talk about her pregnancy which I find unbearably exciting because which ever of them got pregnant I knew that M.’s reaction would be awesome, quirky, neurotic, human, and that it would push all her buttons to do the thing I most love about her which is her intense scrutiny and logical analysis. Also, she said I was right that if it happened she would get a strange pleasure in feeling like a scientific experiment observed from the inside, and she doubted it, and I was right, which if you have ever had an ex-girlfriend, you will know is satisfying. Plus, can I just say that one of my best friends in the universe plus M who is basically my ex wife, having a kid! Most exciting thing ever, besides my sister having a kid and joining the secret cabal. I cannot wait to spoil it occasionally and buy it very strange little onesies.

Squid fed us cheese and pomegranates and chocolate chip cookies — sending me home with an extra pomegranate from someone’s ranch because I devoured the first one without stopping – not remembering it is pomegranate season and I particularly love them because of the way you have to dissect them and work hard to get the marvellous bursts of flavor. It is the pleasure of the satisfying ticky little work of untangling a ball of yarn, combined with eating secret treasure. I was happy she likes the shirt with the pacific tree octopus. But if she was being polite and really doesn’t, she should treat me like family, and just wear it once pointedly around me and then put it away for a good respectable year or two in her garage and then donate it to charity, the way we all seem to deal with such situations around here in suburbanlandia. But actually, I believed her story that she had a bad week and then was hung over and woke up to Seymour displaying it like a snarky birthday banner.

Rook and I made a grocery list that shall live in infamy in which incident I realized how deeply we misunderstand each other over small things, like whether one is having a productive discussion or a maddening argument. It ended well, and I went off to grocery shop in my maddening way to my heart’s content, only showing a bit of prudence with the produce so that it wouldn’t rot in the fridge. I drove the 2 blocks to the Hole Fuds and then walked through – added bonus that I helped a very old lady hang up her handicapped parking thing in her car; she had dropped it on the floor and couldn’t manage to bend over to pick it up, or did not want to deal with the difficulty, which I completely understand. She told me it was one of her bad days and I showed off that it was a good day for me and we had some crippled lady bonding conversation about sciatic nerves. So, I walked through the entire store, and then bagged my groceries, feeling very muscular about the triceps, as if I was going to accidentally haul up a gallon of juice and it would fly up to the ceiling because I forgot I was raised on Jupiter and have super strength. At home, I made oatmeal bread and ate pasta and spinach salad.

I thought about what M. said in our phone call. Her hard question to me was “You used to really want to have a bunch of kids. But then you only had one and you seem happy with that. What about being a mother did you find too hard, or different that you thought, or what parts did you find that you don’t like?” It was something like that, but more blunt and angular, maybe beginning with “How come you don’t actually like being a mother?” She starts with the most uncomfortable, squirmiest framing possible. I recall fondly how she would confront my male ex-lovers, prospects, or friends with opening salvos like “How can you even stand to be a guy in this patriarchal society? How can you not want to just to kill yourself? I don’t understand how you can live with yourself.” With a sharklike grin. It was teh awesome. The thing was she was just curious and wanted to know. It came off as scary, yet sincere. So with the way she asked her question today, I learned something just from my initial reaction to the framing of the question, which if it had been phrased more mildly or diplomatically, would have not led to any new information. I don’t have to start out explaining all the ways I of course DO LOVE being a parent, or a mother. She knows them well, or can extrapolate them. That’s not the question! What bits don’t I like? How did I move from wanting many children or at least more than one, to wanting one? Mainly, realizing how much labor and thought it takes. Also, I found I’m not as good at it as I thought I’d be. It’s not that I’m bad, it’s just that I can’t live up to my ideals; as if I could be my mom and dad at their best moments, but all the time. I am too ambitious to have that much to give. There is also the factor of having two miscarriages that were physically and emotionally difficult. I couldn’t deal with more risk and grief. But it is more about energy and maybe ambition or self protectiveness, which you can see as positive or negative qualities. I am very happy to give over a chunk of my life to being a parent. But, with another baby, with all the strain of infancy and no sleep, I would be less good at parenting than I am now, and would not take well to the demands of life, and the amount of unselfishness I’d have to have.

After Squid’s house, we came home for a bit. I assessed our Halloween costume potentials, and called my mom and dad, and made lists and diagrams of how I would make a bat utility belt and utilities from duct tape, and realized I had not done any work or written my column or blogged anything for days or prepared for the conference and that I have a meeting tomorrow at 9am and a doctor’s appointment and then the conference again, and work, and my parents are coming later in the week, and that I had mixed up many things about my upcoming schedule. Then we went off to Haus of Humour, the local amazing costume shop, and found the perfect Batm4n costume for Moomin. So that is somewhat less work, though I regret the utility belt (which would have been 3 errands and hours of work.) I got a ridiculous wig which faintly recalls the great wig I had years ago that I called my “tumbling chestnut locks” which was horribly realistic and yet so wrong. This one is for my Oracle costume (the superheroine not the database software.) It’s longer than Barbara Gordon’s hair should be and yet I liked having long pretty pony hair, even hair that is utterly wrong and silly and porntastic.

Back to my oatmeal bread, which came out very well! It is from a bread machine so don’t be too impressed with my mad baking skills.

I have left many things out, like visiting hazelbroom, and going to the park with yatima, and some peculiar physical reactions and things I said which were sort of metaphory yet true, and some minor dramas of life which are embarrassing but which I continue to mull over.

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Looting the mysterious drawers of dream mansions

Last night I missed kj’s play in the South Bay because I couldn’t face the drive to Burlingame and back to Shallow Alto and then south and then back to Shallow and my car and home to Deadwood. And sitting up during the play. Instead I dropped Moomin off at Hamster and SuperT’s house. It was boiling hot. She came out of the shower in a towel and a towel turban to serve me fizzy italian lemonade.

We sat beside her fans – or I laid on her couch with my feet up — and commented on the architecture of the ceiling molding and the state of our marriages and relationships as well as our friends’, and the way our kids played, and all that. Talking about a marriage of a person we know. “It’s not like she’d divorce him because he doesn’t like to French kiss while it’s one of her favorite things to do for hours and hours.” “Yes but can she face the whole rest of her life without ever French kissing for hours and hours, ever again?”

She had empty boxes out for the kids to play with. they made “animal habitats” and i admired her new outside porch space — she took the little concrete patio and made it a place a bit like Jo’s monkey pit, with a scavenged persian rug and some cushions.

Then to Zond-7′s where I lounged in bed all evening with fancy pizza and computers and an extremely entertaining visitor, Rain. Rain is hyper in mind and body in the way of people who might in the past have done a tad too many drugs and were left sane but more interesting and open to ideas than they might have become otherwise. We gossiped about multiple layers of things at a fair amount of depth – of recent history of the valley, of startups and web 2.0 culture and this time around’s boom, and of specific personalities, then of people we knew, and nifty projects, and that’s all I’ll say because it was a gossip session of extreme and frightening and pleasant frankness because I felt like we clicked and also because Zond-7 seems to know her well. This, all from bed… with computers… the nicest way to have a conversation.

We ate pizza with corn, pineapple, black olives, green bell peppers, and grilled chicken and it was fanfuckingtastically delicious late at night… again the best way to eat anything… in bed. I played with Quicksilver and started exploring it. Zond-7 started teaching me some of his more useful keystroke commands to do things. We both tried working but fucked off a fair bit reading blogs and news and exclaiming at the world’s fuckedupitude and marvels.

I read a bit of a Dover book about pirates, a sort of 1930s-ish feeling book or maybe 1890 and it is funny that I couldn’t tell, because you should be able to tell that!!! Or, I should! It was timelessly Britishly imperialist in tone and I’m not sure if it’s worth reading all of it. It was good enough for a long hot bath.

Then we stayed up super late talking over our relationship. What do we want it to be? How will we know if we’re fucking it up? What about times like just now when we’re stressed for time and can’t balance life very well? What do the failure points in our previous relationships mean? How much were specific dysfunctions to those relationships and how much are our own individual failings we bring with us? How will whatever damages we carry forward affect us now? You know you aren’t fucking it up when you end a conversation like that feeling very peaceful and content and comforted and good.

I woke this morning having had an intense dream. I was doing some sort of intense super technically giant work project with an event. (Ahoy B–C—-Block, you haunt my dreams.) All sorts of things had to be coordinated and fancy tech totally new displayed involving odd internet holographic thingies. As I was walking past a grocery store in this dream, I noticed a bunch of tables in the parking lot, set up with obviously free food ! I mean, hot damn! I started stuffing things into my shoulder bag — jars of peanut butter, 6 packs of fancy italian fizzy lemonade, loaves of bread — thinking “hot damn! free!” but sheepishly realizing I didn’t need to take the free peanut butter since I could afford to buy it.

Then in the dream I was inside the doors of an enormous mansion. The owners had died, or gone away, and there was something like an estate sale except more like it was free. Just go in and … they had taken the things they wanted, so it was okay to rummage. In a far-away room in this labyrinth place I found an enormous antique cabinet going all the way up one wall. It has always been my fantasy to own a cabinet with a zillion tiny drawers — a card catalog or chinese medicine cabinet — and this fit the bill. Enormous, dark polished wood, with baroque carved embelleshments and drawers of all shapes and sizes. They were full of all different kinds of colored dice and game pieces.

I resolved to find out who had charge of the mansion and buy this cabinet for Rook. How surprised he would be! Then I realized he might just be indifferent and be fine with his different dice in little plastic baggies and would not greet the enormous cabinet with a sigh of joy, as I would. Plus, I thought maybe they wouldn’t sell it to me at all. So I looted handfuls of each different drawer into my backpack, thinking I would sort them out again later to present to Rook in a way he would like better. (Yet still ask about the cabinet, or look for a similar one, less massive and imposing but still pleasing to me.)

Next to the cabinet of many drawers there was a low bureau or dressing table with a mirror on top. When I was little I liked to explore my grandmother’s and mom’s bureau drawers. My grandma had things like very old-seeming gold-backed hairbrush set and perfume bottles on a silver tray. The texture of pantyhose in the drawers and the sort of mysteriousness of girdles and bra straps… For me going through her bureau drawers was like trying to understand the weirdness of femininity or womanhood. I tried sometimes to duplicate or echo this feeling in my own rooms, with top-of-bureau setups that had a ritual feel, like little shrines.

This dream bureau was very similiar to my grandma’s, but more mysterious and… oozing the feeling of wealth. (Rather than shabby overly-cared-for just-post-Depression-era lower middle class fanciness 30 years later.) Things that seemed like they must have cost hundreds or thousands of dollars in department stores, golden handbags with delicate clasps, hose and lingerie that was like thousand dollar tissue paper. Gold tubes of rose-smelling lipstick.

Then there were drawers and drawers, flat like map drawers, of makeup of different shades, with everything labelled, poetic names of dreams and dawn and twilight rose and masquerade, starlight disco, ocean midnight shimmer.

I could not decide what I wanted from this. It was all attractive and expensive and yet nothing was my style and makeup, while fun, feels like drag. Finally in one of the makeup drawers I found an array of tubes and pots of glitter, so I took the nicest one to decorate my hair for the big party at the techie event I was organizing in the dream.

Down deep in the back of one of the clothes drawers there was a strange designer-y outfit. It was like a tight bodysuit that had a cartoon landscape sewn into it, patchwork style, with a dinosaur, and was clearly meant to be worn with expensive femmy things as a weird designer outfit and would fall apart in about a month. I took it to use it for pajamas.

I’m awake late, and have had coffee with condensed milk, graham crackers in bed, and to be nice, washed Zond-7′s dishes, as he has one million thousand work things and deadlines before he leaves for Yurp, next week. It is cheating to take the easiest task off his hands.

I’m off now to the game con! I will buy dice and celebrate the synchronicity of my dreams.

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