Posts Tagged ‘asthma’

Feeling low

I’m feeling a bit low energy from being sick for so long. I have either some lingering annoying bronchitis or really really hair-trigger asthma left over from the bronchitis or both.

As I lie here working and reading blogs and listening to music, I’m fairly content but then it’s like the wall goes down, some kind of wall between between me and all the times I’ve fucked up and disappointed other people. Past failures are playing over and over in my head. I think of whole communities I was close to, that treated me so well, like I was a minor rising star or at least a promising talented person, and somehow… I’d just drop the ball and drift away. How many times has this happened! And how bitter it is when I not only do that, but someone then writes me to explain how I let them down.

Nothing in particular sparking this, I’m just annoyingly ill and my parents were visiting. I’m reading a lot and playing Galcon in odd moments.

Emotional flatness… or meltdown. Not a fun choice!

Here I am in bed being vaguely pissed off at the world, with a nasty headache.

i am so sick of being sick

Cheeriest music of the day: The Kabeedies…

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Things I thought of

Lately I was thinking of a couple of things. How my grandfather would get me to thread his needles for him for mending or buttons, when I was little. I knew he partly wanted to make me practice a good skill and because he liked to see that I had confidence doing things like that. But also he did really like me to do it for him because of arthritis and not so great eyesight up close. Anyway, I think of my clever little hands, and my concentration as I licked the thread. Of beading projects and ticky little things I liked to make with fierce concentration out of elaborate kits or just made up. I have been able to do things to some extent, but I know I don’t have the same dexterity even in good moments in the last year or so. It varies with how good I’m feeling. And I’ve felt better and worse and better again so it is hard to believe that some loss of motor control will be permanent. True? Or not? How much? We’ll see.

I was thinking again of all the times I have had to lie down during role playing games. Going out, you can choose *not* to go out. But a game is scheduled with a lot of people and you have to show up to do your part or it throws things off. It is handy to have the games at my house because I know I can lie down in a pinch and still play. And people have gotten used to it I think. We have even dragged a small mattress into the living room when I have felt dire. And that’s worked out okay. I appreciate that. And I think of it right now and cling to it and think of the acceptance people showed me of my variable abilities to do things over the years, and it is comforting.

I cried a little on Minnie at one point today as I thought of Moomin and that he is so young and his memories mainly start around now. That he will not remember me running around with him or carrying him or sitting on the floor playing or doing “airplane” with him on my legs and instead he will grow up and I will just be more and more disabled. I sobbed a bit for about a minute and then came right back knowing he will know my other abilities that he appreciates — like the way he climbs onto my lap to zoom down any ramp or hill for a wheelchair ride and how his friends also beg for rides. I was never such a good runner arounder anyway, not so you’d really miss it. It just appalled me for a bit to think of how he will see me and what it means for him in the future.

The doctor today to a few things about things I can and can’t do, that I said, like having to lie down or trouble lifting things, “But that’s not NORMAL! Why didn’t you TELL ME!?” I explained that I just would say the main thing wrong, which has usually been either breathing problems with asthma/bronchitis, or walking problems. If you go off listing a million things wrong that seem kind of minor then in my experience you will be just dismissed. Or sent for a blood test and then told everything is okay. Dismissed… As I have been for so many years.

I read a paperback book of She-Hulk comics and more of The Futurians (which is interesting but rambly) and Minnie picked me up from the wheelchair store and took me thrift shopping and fed me meatballs and drove me to my appointment and then to get a decaf latte and home again. It was so good to be with her today. I went to Moomin’s parent-teacher conference and talked to his 3 teachers. I like his homeroom teacher best and she is the nicest sort of understanding and warm and perceptive person for him. HIs report card was awesome!

I am eager to get my ramp set up. I might be buying some crap off Amazon. My mom in law sent me chocolates and my aunt sent flowers with the most retarded message ever with something on it that I suspect is a reference to some baby talk term I might have said when I was 3… plus I know my mom made her do it. O well. I do like flowers and I feel sorry for her and her sad life… Oddly, she is the one who should have the flowers. My life is incredibly awesome and happy.

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Diagnosis, sort of

I’d like to just give the short version for now and more diagnosing process will happen later.

I went to a neurologist. Dr. Capybara said I am obvious mid to high spinal cord injury, incomplete and high functioning. Whether it is the old car accident that did some bruising or compression, and it has been periodically aggravated, or whether it is some weird syndrome or degenerative thing, they will tell later, and also more precision about the level, but maybe c6 or upper thoracic, and it is also not necessarily pinpointable like that but is more complicated. So other doctors and ortho people were looking at my lumbar spine and sciatic nerve root and discs and not seeing anything and also noticing that my right leg has amazing muscle tone, and them figuring if i have a disc thing or muscle/ligament injury like a back sprain, I am not getting better fast enough which is somehow my fault. (And they’d do things like reflexes and poking me, and act like I was overreacting and faking pain.) But my leg has (legs have) amazing muscle tone and often so much pain, because they are spastic. As in spasticity. Like, not under my voluntary control. Also, the stuff with my arms that only acts up now and then, is not like RSI or some sort of separate neck thing that flares up, it is the same spinal cord injury. Or lesion. Or whatever it is. Maybe it is MS but maybe not. Whatever.

My assignment is to take these seizure meds at a low dose at night and then increase them slightly every week, and see if that helps the pain. Also I can have baclofen which (unlike regular muscle relaxants) might actually work.

How kind of the neurologist to gently take off my socks for me, completely understanding, and to then put them back on. And to believe in how bad my pain is.

Cold is so bad, mostly because of spasticity. But for years people kept just running blood tests on me and saying I don’t have arthritis so, the pain was… I dunno, just in my head? Or that I should exercise more.

This diagnosis, imprecise as it is, puts a different spin or frame on everything for me. Instead of being sort of a malingerer who doesn’t get better fast enough, I am something like a C6 incomplete para with very high functioning, who got better amazingly and slowly over time.

There is some backstory here:

2007: Day of things breaking This year’s flareup begins, stutteringly
2007: Sciatica pwned! more beginnings of this year, my hopeful feelings
2006: a little babbling while the drugs last In pain, I write a letter to my body, and photograph my uncooperative legs
2006: a little whining about my legs A bit of a flareup in 2006, pain and spasticity
2006: in which I pass the evils of capitalism across generations I describe a flareup in Feb. 2006 and remember the bad times
2006: Now with flames I muse upon my secret past as disabled person (expanded upon in comments)
2005: walkies One of those moments when I was feeling the pain and weakness and getting scared
2005: dyke march report – In which I march on legs, and reminisce about times past, and run into Joi who is also intermittently disabled
2004: giant pathetic rant from 1994 I transcribed a journal entry from a 1994 notebook, interesting
2004: Not at all meaning to be mysterious the story again including the car accident, concussion, original neck/shoulder/arm immobility (worst pain of my life, threw up and passed out), asthma, and degeneration sequence in 1989-1990.

(from 1989) I keep getting worse and worse shoulder and low back problems: same thing, I sneeze, or bend over to tie my shoe, and suddenly I’m sort of frozen in one position and can’t move and am gray and sweating with pain. The doctor gets more and more frowny. X-rays never say anything significant.

I remember these times, which haunt me,

I could no longer raise my arm above my head. Who knows… All sorts of badness then happened… My shoulder got better but my back and leg got worse and then the other leg started just collapsing under me. I would take a step and the leg would just buckle. No idea there. I lost my job.

After collapsing on the campus of DeAnza I ended up in Valley M3dical Center being kicked around from department to department having conversations like this: “I can’t walk, what am I supposed to do? My legs don’t work.” “They look normal on the MRI and the xray. Without a diagnosis, we can’t give you a wheelchair. You can’t get a diagnosis until you see neurology and they don’t have appointments and won’t talk with you until 9 months from now.” “But I CAN’T WALK.”

More detailed backstory, in a coherent narrative, with photos:

*Moody retrospective In which I start to tell the story of wheelchair, crutches, cane, walking and all those fluctuations. With photo of me rollerskating naked down Market Street in 92. I forget, often, that in 90-91 I often couldn’t walk, and doctors were telling me it was because of “referred pain” from pelvic inflammatory disease that mysteriously they could never find any evidence of, or because of internal adhesions and scarring. 1991 was the days of peeing in a bucket because I couldn’t get to the bathroom, and not knowing why, and welfare hospitals who treated me like I was a junkie seeking pain meds. 1990 was when I couldn’t ride my bike anymore, and couldn’t get to work, and many other disastrous things happened.
* Scrabble in the park How I saw mountains for the first time, and hobbled to Vernal Falls. Some horror stories of bad diagnosing from welfare hospital doctors. How bad the pain can get, trying to hold myself up with arms off the seat in the car, because of the vibrations. The feeling I have had for the years of non-disabilty, of effort and bravery and fear.
* Ms. Muscle How I stole a wheelchair.
* Between the post office and cafe Depths of the hard times, 1992 or 93, pain and disability level much worse than I am now. In which going to the cafe, or walking to the mailbox, was the highlight of my day. A lot of days on the porch wrapped in blankets, eating pot pies. I encounter people’s strange, rude, reactions to visible disability.
* All dressed up with someplace to go – babydyke badger with wheelchair, 93-94ish, going to parties and being a wild child no matter what
* Santa Cruz Mountains – 1994-ish. In which I treat my cane as a punk rock fashion accessory
* Growing out my hair – In which I could mostly walk, but sometimes wheelchair. Handrails and bathrooms explained.
* Cactus Club In which I get better slowly in 1996, onward, give away my wheelchair in 97, and limp for years. And then got pregnant 3 times and had Moomin. 2001 onwards, occasional winters on and off crutches.

I think of all the years that I had to explain things at work like why I needed to lie down under my desk, and just get horizontal; or why it was sometimes hard for me to walk across campus and sometimes not. I think of all the countless hours Rook massaged my legs, or that I had to lie down during our role playing games. All that time Rook always accepted me and without question helped me manage pain, ran me hot baths, sometimes would rub my feet for *hours* while gaming or while he watched TV. I worked hard on my own, but he got me through so much of it. All the times when for months I would manage a day, barely, but would come home from work and go to bed at 6pm, and he would deal with all the rest of our life and practical things. (Even when I was “not disabled” these last 7 or 8 years, this would happen.) All the times I was in university classes and would lie down on the floor to take notes and people acted like I was a freak. And I would just have to say, “Well, I have to.”

All the years when I couldn’t explain very well.

It is killing me a bit to think all that time, I was fighting a spinal cord injury, which if it were diagnosed, I would have had a lot of help, and real rehab.

As anyone knows who has not had a diagnosis and then gets one, it is a relief to have an explanation to give. No matter how scary the diagnosis.

I do (as always) feel proud of my years of struggle to get better, and I always respect the hard work that took. In job interviews where they ask what, outside of work, are you most proud of as an achievement, I always say “I was in a wheelchair and used a cane for most of the 90s, and got out of it.”

That sounds wrong in some ways because there is nothing wrong with using the wheelchair. But I am proud that I basically managed my own rehab, consistently, for years.

This post is longer than I meant it to be. I am having trouble processing all of this.

I trust that I will get back to where I was at the beginning of last week, and will be walking with almost normal gait for a block or two, and not constant pain. That is my goal. If I can get from Zond-7′s house to the cafe, and from my house to Hole Foods, then I will be very happy with that level of ability. And then from there I will set my goals further to walk more and more.

For now I would be happy to be able to *wheel* to the Hole Foods, but I can’t yet. I’m going to drive to work today, and ask for help, and lie down on the couch while working, to save my sitting-up time for the evening thing.

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Scrabble in the park


scrabble at yosemite
Originally uploaded by Liz.

Here is a photo of me and D. playing scrabble at Alexi’s house when she was a doctor in the park at Y0semite. At that point I was somewhat disabled and we were both having major asthma troubles. I recall going up the trail to Vernal Falls both having to stop every 50 yards and gasp and rest but going on with it very stubbornly. must be… 93? 94? I was very damned stubborn. We got to where we could see some sort of falls and then turned back. We laughed at ourselves a lot. Years later I finally made it to the top of the falls with Rook.

It was the first time I had seen mountains really.

D. is easy to be around because she knows what it is like and what is at stake. You can do a little but it is a game of how you spend your ability. It’s a risk and a gamble. So I was scared to go to Yosemite but she scoped it all out and would say things like well you will be a wreck after the painful drive but at the end we will put you in a hot bath and give you pain meds and massage you and give you tea.

I remember being incredibly frustrated and crying because of wanting to scramble around on the big granite boulders but I just couldn’t. Then, people wanted to drive to the other side to see Mono Lake and I was madly curious and had books all about the mountains and geology but knew the car ride would destroy me physically. (Again.) And it did, so at the end I could only just kind of sit there in the parking lot. This must have been pre-wheelchair, when I knew I couldn’t walk very well and was limping, but didn’t know why.

There were times around then when I ‘d go to the doctor and they woudl tell me I “maybe had MS” or else they would say it was “hysteria” and I also had a lot of talk about how I had probably had PID and had some kind of internal scarring in my abdomen that caused adhesions that made it somehow painful to walk. (??!!!) But I can tell you right now it was the exact same pain that I have right now, down my sciatic nerve, and it was very intense.

Often, in a car, I would be desperately trying to hold myself up off the seat by pushing up with my arms. I can be in that state, and can still hold a conversation for a bit, but one notch past that, or hours of that, and I lose my ability to focus completely. Trying to focus helps push the pain away to where I don’t pay attention to it. It is like reading about stories of torture or sensory deprivation and the value of trying to work out complicated logic puzzles.

Sometimes I try to tell people that I’m in a lot of pain and they don’t get it. C. would never get it even the tiniest bit because she is incredibly healthy. And I would just want to shake her and say “do you realize that my just acting reasonable and human at this moment is an enormous heroic effort?” Or … “Do you know what I am risking right now?” (Anything from tolerable but real pain, to “what if I break myself to the point where I have very great difficulty turning over in bed and when I do, I cry and almost pass out.”) When I talk about it, I feel like people see it as whining and sometimes it is whining. But often my intent is just to communicate that I am in a different mental state than they might be and am expending a lot of effort. So how I decide to allocate it is important to me. More about allocation decisions later. But that is one of the states of mind that I think maybe other disabled people GET and non-disabled ones don’t. You have to live and so you have to make that kind of decision all the time. You can’t just go to bed and wait to get better before you do some activity… or you’d never do anything at all. Instead, you weight the cost.

Back to the photo. This early in my struggle I had not learned that sitting in this position was a very bad idea for my low back and level of pain. Now I know it.

d. could usually kick my ass at scrabble but I occasionally beat her and gave her a run for her money. she’s a demon with the 7 letter words.

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Moody retrospective


parade 92
Originally uploaded by Liz.

i drove to oakland today and had a fine time hanging out. I sort of wanted to be in the wheelchair because of hurting, and in it, i can get around easier. It hurts a lot to get up and down from chairs and i stupidly kept getting on the floor. But didn’t want to be in the chair, because I didn’t want to… i dunno… something… I just didn’t. I thought of how nice it would be to go to a cafe in SF on the way home with Moomin, but I didn’t do that either because I realized I might be at some kind of breaking point. And the thought of going to a new place seemed daunting; exhausting. Would I be able to get into the bathroom, would I have to get up and down, would I ask for help to get the chair out of my trunk and put it in again, all that sort of thing. So I did not. I went to E.’s 11th birthday party and went in the chair. I still got up and down a stupid amount and exhausted myself further. Around a lot of kids somehow it’s hard not to. I laid down on the couch for a while, which helped. So although I had a good time today… a beautiful day… under the surface I was also brooding a lot about what to do every step of the way. If I get up do i take the cane or do i try to walk without it and just limp? I dont’ know what’s best. I am trying to graduate from crutches to the cane. And then sometimes think “oh fuck it… i refuse to put any weight on this fucking leg.” and go back to the crutches for a while.

Pain made me cranky today, too.

Here is a photo of me from 1992. I was roller-skating nearly naked down Market Street and I had the most glorious wonderful free feeling you can ever imagine. Not only at the pride parade painfully ecstatic to be there but also feeling physically very powerful and relatively healthy. My asthma was under control.

I had spent much of 90 and 91 becoming increasingly unhealthy with chronic bronchitis. And some kind of hell was happening which was probably either a cyst or PID or kidney infection or some combination and which kept getting all sorts of contradictory diagnoses but I had weird trouble walking or doing stairs for some of that time (aside from the severe asthmatic interludes). And then it all started to get better. I had good jobs and was writing a lot.

A rare photo of D. who hates to have her photo taken because of her family history which I suppose I should not talk about so I won’t but it is something of a phobia. If she did not have to look directly at the camera then it would be okay. It is not nice to talk about people’s phobias… I hate it when people figure out mine and want to ask questions or tease me. Anyway, it’s funny to see old photos of her sometimes in the background and just recognize the way she stands or a particular arm movement from far away.

Anyway I was putting this photo to show my baseline of when i used to be not disabled but as I typed this I realized that there were so many times before when I was and it was destroying my life because I didn’t know how to cope or what to do. When me and M. first moved to Berkeley in 1991 and I couldnt manage the stairs in Pax House and we were in the attic! Oh, my god! the hell of peeing in a bucket and crying… because i couldn’t make it to the bathroom, which was down a flight of stairs. And we were so poor I also remember crying because I wished i could have some fruit juice. M. trying desperately to support us. The only way i got health care was through the ER at Alta Bates. We were 22.

I guess before that in TX I was healthy before the accident and before I developed the really bad asthma. I would ride my bike all over and I loved that feeling. Then the asthma and strange physical problems in my back and shoulder made it really hard to keep riding my bike and I couldn’t get to work or class sometimes. I had no idea what to do and doctor visits would result in nothing.

The allergist fiddled my inhalers every 6 weeks or so. steroids fixed me occasionally. finally, constant nebulizing kicked the asthma pretty well. i did quite a lot of nebulizer intal + albuterol + theophylline pills + antihistamines + some other inhaler maybe atrovent or something like that. But for years the bronchitis would come back and then i’d be messed up for maybe 6 weeks or until i got prednisone.

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Feeling hopeful on steroids

I feel pretty decent today! Leg more like tingly and wobbly, but not so much pain! I can walk around a bit without crutches, better than yesterday, way better. And I sat up, had pancakes at the cafe, (gingerly, leaning back in chair not forward over table, dripping syrup on my shirt) and went to physical therapy. An hour of down time, stretching, heating pad and then I sat up and worked a bit, and felt human.

Maybe this is the steroids kicking in.

I still can’t bend over. I went to try to get something off the floor and it was like when giraffes bend over to drink. I braced myself in 3 places, splayed out giraffe-style, reached delicately forward with a giraffe-hand, and with great care, attempted to bridge infinity by bending my knees.

It’s very hard to get up and down from chairs. Hurts! I fall in, I heave myself out with arm power, gripping for dear life.

Last night was seriously the dark night of the fucking soul with the pain. So I’m extra happy to be reprieved today! So far!

The physical therapist was happy that my exercises are better, leg a bit more stable.

Caution! Do not make assumptions! Do not overdo it! Go back to bed! Don’t get too cocky! Steroids create exclamation points! Plus, I can breathe out of my nose and my little-bit-of-constant-asthma is totally gone so I’m *high on oxygen*.

**********
Oh well, serious pain started around 3:30 or 4. To bed. Up to eat pho ga. Then, just ow. Had to drag my leg again. Muscle spasms so far up my back I couldn’t take a deep breath. Hard to be that way in front of C. Also, if you can’t take a deep breath, it’s a bad idea to cry. Muscle relaxants taken at 8:30. It was a nice day while it lasted.

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The Phoenix Guards, and helpful things to do for invalids

Wow, I really really enjoyed The Phoenix Guards – so perfect! So gloriously pompous and silly and Dumas-y! Homage and parody… must have ben awfully fun to write. Three Musketeers, but satisfyingly with women in it, and not just plot-device women but actually integrated-into-the-story-women. By page 10 Tazendra was playing poker and duelling with a cardsharp on Main Street. The unlikely friends met, had a coach ride full of intrigue, joined the Musketeers, more duels & intrigues, even more satisfying descriptions of outfits and swords. I loved the funny dithering conversations. A party of adventurers, easily a role-playing game in episodes! Did… they weren’t human, right? The humans were the Easterners and the various characters were sort of dragony? That’s what I gathered. Anyway, there were women everywhere, at all levels of power and plot and narrative importance, even their housekeeper was awesome because she slacked off and had a personality, no one was made rapeable in the vile way that I hate in books, no one simpered or was perky or plucky…

A particularly good sentence:

Lord Adron, in between eating and thinking, which activities he was, in any case, accustomed to perform together, told the host and anyone who would listen of the recent exploits of his travelling companions, which caused Aerich to shrug, Pel to smile, Khaavren to blush, Kathana to consider more closely her food, Uttrik to look nervous, Tazendra to look haughty, and Mica to positively glow.

Nice because of the wordy pomposity but also the way the characters’ reactions are neatly, tersely laid out; they’re differentiated from each other and their personalities further illustrated and cemented.

It was nice to read this as a palate-clearing antidote after this grotesque, pretentious, dull book.

Yeah I’m cranky from pain, so sue me.

Need more Brust books… need to read Immortals series which I’ve been saving for next episode of being stuck in bed, which would be now.

Helpful things to do for a person sick or in pain in bed:

- dinner on a tray with perks, condiments, salt, all the things one might get up to get one’s self if one could get up without thinking about it
- just be around, and check in every half hour to offer fetching/carrying assistance, a few minutes every half hour or even every hour is very reassuring
- water refills, juice etc
- remove old dishes, trash, straighten bedside clutter, create easy to reach space for what’s needed
- pick things up off the floor
- straighten blankets, fix pillows, difficult to do for yourself with mobility problems or weakness from being sick
- gentle petting, sympathy, shoulder to cry on
- small self-care things, qtips, fingernail clippers, lotion, lip balm, hair clips, face wipes, icy hot. Heating pad!
- is the room smelly or stuffy… if so fix this… air it out, scoop catbox, offer nice smelling lotion
- for fever, bowl of ice water plus a facecloth. pain/heat relief, passes the time, gives control to the patient
- luxury things, small pleasure to outweigh pain;
- for extreme difficulty a child’s sippy cup is great. otherwise, straws.
- listen to complaining; articulating the pain or difficulty might give the complainer a bit of control or a handle on it
- offer distractions, light conversation, books, frivolity
- offer change of clothes or sweater or remove the 4 extra sweaters that have piled up in the bed
- offer inclusion in socialness or quiet, be aware of offering choice. If you come in my room talking loudly and chewing with your mouth open, I am trapped, miserable, and can’t escape, and am reluctant to boot you out because probably I need your help and can’t afford to piss you off. I can’t take chaos or jostling, but don’t like to feel isolated or excluded either, I like to know what’s happening. (Very young children are cheering in like, 2 minute doses, but difficult, because they don’t have any boundaries, and I can’t enforce my boundaries easily while lying in bed. )
- flowers are cheering, you might think not, but they are
- for me, with the back problem, I need help with socks/shoes sometimes
- make snoring-ass husband sleep in other room please 8-) (sparked by current events taking place to me, sounds like a convention of asthmatic walruses going uphill)
- an office chair with wheels makes a good makeshift room-to-room wheelchair
- ultimate luxury, someone to set up a fainting platform outside in the sun, with blanket and pillows and water and the necessities of civilized bedridden life, and then checkin and offer to move back after a while.
- Damn I wish I had some grab bars in the bathroom, you have no idea how hard it is to get in the tub especially when i need it most.

Those are mine, but I would guess they are nearly universal. The person is trapped, or has to make a hard decision of where to put very limited getting-up resources, where getting to the toilet independently is a high priority. So, think about how many times you have a small need, and can act swiftly and unthinkingly to satisfy it. Project that desire (frustrated) into days in bed.

When I feel a bit better, like this morning, the uncluttering and food things are my first priority. So, as soon as I can, I tend to do these things for myself, because then they help later when I fall over again.

No one is going to get all those things, all the time! I tried to put them in order of importance. It really sucks to have to ask for every tiny thing. So, this is a guide if you want to be extra thoughtful for someone.

When I visit someone in the hospital I do the bedside declutter, dish removal, drink refresh, and reorg. You basically have to do it a few times a day.

That’s my guide of ways to help people who are stuck and help them feel less helpless and beholden. Read Cherry Ames and Pollyanna for further instruction in the ways of nursing. It would be amusing if one’s bedside nurse would solve a mystery with their 6 attractive nursing school roommates while dating a handsome though surly doctor AND a devil-may-care airline pilot, and would tell one all about it. Calves’-foot-jelly plays a mysterious role in these proceedings (see Pollyanna). Also, I hear that alps and goats, or cute baby animals off the moors brought by wholesome peasant boys with strong Yorkshire accents, are useful. Perhaps someone would bring me some goats or robins or a mysterious key, or at least show up in lederhosen to infuse me with Heidiological and Secret Garden healing rays.

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Odd bits of slang from Le Fanu

The other day I lost the book I was reading and had to read two other books in the middle & I’ve just (happily) found it again. So, back to Checkmate by Sheridan Le Fanu. The other two books were Dr. Wortle’s School and um… something else… dammit….

“Why didn’t ye fetch a line o’ the old author with you? asked the rider — meaning brandy.

A few lines later, “Would ye like a drop of the South-Sea mountain (gin)?” said the stranger, producing a flask from his pocket, which Paul Davies took with a great deal of goodwill…

I’d like to know the explanations for these! Is there a hill named Geneva in Southsea? What’s the line from the old author, something that rhymes with brandy… or what? It’s torture not to know.

Oh! and at breakfast I started reading a wonderful book from the Lakeside Press series of history books or really of original source material. Some German dude who travelled to the U.S. for the gala opening of the… of some railroad in the Northwest going through Minneapolis all the way to Portland. The railroad tycoon had borrowed something like 20 million dollars to build it and was losing money, so he threw a huge party and invited all the heads of state and investment bankers he could think of to take a trip out west for the ceremony. I’m only in the middle of the introduction to the book, but it’s already vastly amusing as random European bankers and diplomats and Counts and Countesses endure small-town parades & endless oratory about telegraphs and the Cornucopia of Wheat that the Railroad will Bring Forth all as they freak out quietly about how Indians might attack and they sip champagne & make fun of Minneapolis some more. Henry Villard is the tycoon – I just remembered. From what it said in the introduction he was a smart & fascinating dude. I have not gotten to anything about the German traveller yet.

Today I woke up very early, wrote a tiny bit, & then worked on teaching prep and paper organizing & grading. Until like, 2pm, which blew, but now I feel more prepared. The most creative writer in the class unfortunately had to drop, which bummed me out a bit today because I was looking forward to reading all their stuff and to being generally encouraging to an arty type of person with a little spark and poetry to them. Anyway, I’m prepared for class now. Then I hauled off with Moomin to drop him off at Hamster’s house. SuperT was out and so her fabulous mate took the kids for the day — he was hung over from St. Patrick’s drinking bout. Off to see Minnie briefly. Her pink skirt had me fooled – I thought it was a thrift store find from someone’s home ec class in 1964 but NO she had gone to a skirt-making class with the most pink and gnarly fabric EVER. It even has facing and that lace stuff on the inside hems. Jealous…. Then to Debbie’s which was nice as it always is. Gossip. Wisconny things. Books. I ate vast quantities of homemade bread and pizza. Caraja and I went off to work in a cafe in the Haight. Instead of writing, which I should have b/c it would have been relaxing, I messed around with vmware and ubuntu and parallels and reading all sorts of documentation and reading my work email too. (WTF?) Gave myself a headache… shouldn’t have… Caraja somewhat frazzled and dissatisfied with life, while I was completely fried, and I called xyzzy who also sounded like a fish gasping for the water of some kind of magical relaxation. Decided to go home. But really not quite home… I had to pick up Moomin from Mij’s house where he had gotten dropped off to hang out during the end of Rook’s Cthulhu game & their fancy dinner (lamb’s liver and fancy potatos and sole in cream sauce and god knows whatall else, cabbage and then dessert with strawberries and rhubarb.) I stopped off a couple of blocks away to say hi to Hamster’s mom SuperT because I haven’t seen her in a month or so and then I was all healed up by her warm amazingness. She’s been sick. We joked around like crazy…. She told me about birthday invites that say “No Parents” so you don’t have to feed like 4 times the amount of children you invite (and feed them with actual grownup food) and I was like “Yeah and plus it makes the child porn ring stuff way harder if the parents come” and she cracked up and was like “No man it’s like you get to put them to work in your factory rolling cigars. It teaches them to appreciate their life more.” Inappropriate remark contest! Her mom is here visiting and is very woo-woo austiny-seeming in a good way (as one would expect, knowing SuperT and her Earthy Elegant ways.)

So, onward to pick up Moomin. I started to get asthma right away from the rabbits in Mij’s house and had to leave. What a day of seeing people just a tiny bit! Moomin was playing with Mij’s great stuffed animal collection and came at me with a giant squid taller than he is, growling in a scary voice, “DEATH RAY TENTACLES, DEATH RAY TENTACLES!”. At home we hung out in bed reading almost to the end of Harry Potter.

The other day I had another inappropriate remark moment in the car with A.’s friend who I don’t know well at all. He was all like “And my last year of high school it was like everyone suddenly liked me. Even the jocks.” I blurted out, “Must have been all those blow jobs” and instead of anyone laughing, there was this awkward silence and someone finally went, “Um….. um?” and thinking quickly on how to rescue it I went, “It sure worked for me!” and finally got a laugh.

Back to Checkmate? Or back to the railroad adventure and observations on the quaint habits of rustic Americans? (I can tell it will be like the “Boost for Birdsburg!” people in Wodehouse, but more real.)

You see how it is with me, I get a weekend, I think of a day of down time in bed with books, and instead I worked a full day’s work, went on an hour long drive and visiting, drove some more, stupidly tried to work on real work, visited some more, visited some MORE… and now write this all down in order to “relax” and now I’ll go eat chocolate in the tub while I read a book that is as useless and frivolous as possible. Even normal pop culture would be useful as a social connection mechanism or way to be in touch with the zeitgeist I actually live in. I like old things best, or imaginary things, or things so new that no one understands them. Perhaps my mind has been carefully trained to enjoy things that are as useless as possible as a measure of class distinction and in order to fit me only for being a luxury good to be consumed by others who do actual useful things in the world. Plus, my boobs hurt. Am I pms-ing? Damn! Will I ever learn to do one thing at a time, at a reasonable human pace? Would I actually like to? Isn’t there time later for that, when I cut off all my hair and become a monk?

I was happy to see so many friends today but maybe tomorrow afternoon I’ll hole up in a dark den and see no one until I must. I’m not really complaining. It was a fabulous day.

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Day 3 in New York City

It was a mostly good day. I hung out working with Quilty, and then we went to Think Cafe and hung out working and writing some more, on the good side. On the bad side, my computer is dying and I have had to use one of her extra, old-ish laptops. And then the ceiling began to leak in the cafe almost right over us and other people kept taking our bagels and coffee before we would realize they were on the counter and the counter-people were kind of pissed off and they ran out of bagels. But we got some just in time…

Then I went to the apple store in soho and my computer refused to misbehave. They zapped the PMU. And it seemed just fine. So I walked to the Cuban restaurant my airplane-buddy recommended on Prince and Elizabeth, met a cool woman who crochets hats, had awesome cuban food, and walked through the Bowery to Bluestockings while happily composing blog entries in my head. And then realized my computer didn’t work again. Walked back to apple store. It still didn’t work. DAMMIT. New logic board $280 bucks plus I need to back up the computer.

Then to WWB reading whicih was interesting – I bought the book. But I was caught in the rain. And then had my 3rd and hugest asthma attack of the day. Was rescued in the bathroom of Labyrinth books by Sue, an angel with an inhaler, who brought me tea and unusual kindness. People do not like to see illness or disability, including asthma attacks. It bothers them. Dinner with karen and her friend, who was super nice… Then back, hurting, knee blowing out, limping by now, super sucky, will I last out the trip with the ability to walk? I hope so. I am in love with the subway, as an able person. As a not so able one I will not have fun in New York.

Now v. upset about mailng list being jerks about transwomen, it is unbelievably disappointing and someone on there wrote me privately in a way that was just painful. there are many things disappointing about 70s feminism such as white feminst being racist and the whole lavender menace thing and then the sex wars, and so it is just nasty and upsetting to see this kind of thing rear its head in my home turf where i did not expect anyone would be like that at least not quite so meanly and thoughtlessly and in public. you come to expect people to be sane and to acknowledge their own shit, if they have it and can’t help it, like being brought up with prejudices they can’t get over. Unfortunately the dont’ see it that way. I don’t understand this at all.

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Asthma and bronchitis update

Today was better. I’m still not feeling very strong. On Sun night and Monday I was on the edge of going to the ER, but held off on that and instead did a lot of albuterol and stayed in the bathroom with the room full of steam. I made myself cough up the gunk and then would give it a rest. If you are in that situation, do remember about the steam-filled air being helpful and also, keeping extremely calm. The thing that sends me to the ER is exhaustion combined with panic and I avoided the panic. You have to sort of get in this yoga zen state of mind where you are only thinking about breath. Asthma = enlightenment? Ha!

When I can’t breathe I’m not thinking very clearly and avoiding panic is a really big effort! Sunday night was the worst because I was alone. As soon as Rook got home I could feel a little more secure. I considered going to tell the Pilot and Acrobat I was a little panicky and to check in on me, but then felt too dorky. Next time I’ll do that though. Again, not thinking clearly… I thought of asking them for some pounding-on-the-back but that too was humiliating… It helps but often makes me cough so hard I cry and retch. The awful truth of the very useful “percussive therapy”.

At my worst it also helped to do the peak flow meter just to feel some measure of ‘control’ or objective measurement of how bad things were.

So, today I could walk around fairly normally but it’s exhausting and hurts. I didn’t do any albuterol, and only *had* to go sit in the steam-room once in the morning. I rested a lot. Normal activity of walking around the house is barely possible – I just did, out of insane frustration and wanting to get some things done.

Peak flow is up to 425, which is still awful. My usual is 550-600 on that thing. Worst is more like 300 and I was definitely there on Sunday night and Monday.

So now I have antibiotics. I also have to confess I have a 20 mg predisone left over from some months ago when I had the samem problem and some dr. gave me a huge bottle of 20 mgs with strict instructions. And after a week of that I felt I was going to explode from bizarre unnatural energy and (against instructions) I tapered down instead of stopping abruptly, and saved one… Which I will take for the next few days in 5mg doses. I know… this maybe is unwise self-medicating. But it’s not like most of the doctors I’ve been to have been particularly wise either. This will kick me up to a basic level of breathing better…

Meanwhile I have had over a gallon of homemade chicken soup, so much ginger ale and juice and herbal tea … whew… I have to pee every 20 minutes over here.

Next person to suggest I take some “chinese medicine” or that I am affected by grief from the breakup with Caraja, well, get in line, because about 20 people have now informed me of that “fact”… I guess that the other 50 million times I’ve had bronchitis… er… argh … Can people just accept that a) I have some health problems that recur, including that my bronchial tubes are scarred up and susceptible to infection and b) I am a sciency person and a pharma head and while I will happily ingest whatever hippie thing happens to be around, probably, I’m really super unlikely to go seeking it out? and c) everyone around me has a cold, okay? So it’s not a big surprise I got sick too. Also, I absolutely loathe anything about how stress, or emotion, or whatever, causes illness. True or not, it is unhelpful… I consider that I am massively healthier and more robust than I used to be. Being emotionally healthy is only part of that, and in part is caused by that, as much as a cause of it. As with poverty and health and stress, the correlation is fuzzy and not one-way, it’s more like a feedback loop. Anyway if you want to shower me with herbal teas, homeopathic pellets, Vitamin Wonka, or actually give me some kind of alterna-massageatherapy, go for it, I will acquiesce, out of hope and open mindedness; just spare me the anecdotes and lectures… It makes me go ballistic… It’s just exactly the feeling of when my knee has gone bad, and a doctor tells me to lose weight and suggests “hysteria”. I know intentions are good, but it feels just the same. You are California hippie bitches. I am a geeky punk bitch. Our therapies differ…

Ahahah I was just bitching about this with Minnie and telling her the story of how this one yoga teacher i had for prenatal yoga had infinite gross stories of illnesses she had had, which were all corrected by learning a new specific yoga position to correct the flow of her chi, or something, including one that made her fingernails and toenails grow back when they had fallen out completely. Minnie topped that with a story of how her acupuncturist gave her a CD with chimes and whale sounds that supposedly cure every illness because they are scientifically tuned to your brain waves. Plus… whales.

I do accept the basic advice of “slow that mustang down, sally” because I know it’s bad when I’m getting over-worked and stressed and especially when I am starting to get sick and push myself even harder, to get shit done before the real illness hits… that always makes it worse! I mean, I already know it… so as advice, it’s more like a gentle reminder, than something I need explained at length, you know? Especially when I’m already sick and CRANKY.

I need to get a flu shot… maybe in NYC I’ll be able to do that real quick somewhere.

Tomorrow I hope to hit 475 on that peak flow thingie!!! or more!!!

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