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Nice things: playing clash of clans . I am now in my 7 year old nephew's clan along with my dad and brother in law. and i think my sister is in there too now if my guess is correct about who would name themselves "D'ude".

M. is reading lots of webcomics and I think he comments on them regularly!

it was nice that zond7 came with me to portland. and i liked getting him to get new clothes.

Enjoying music. t'kay maidza is very good! listen to switch tape. very catchy!

I read a crapton of Tessa Dare and Eloisa Dare romance novels. They are not very taxing and they're often funny. Though sometimes they are too far on the dominant-male, slightly dubious consent side of things.

Read a kid's book called The Boy at the End of the World which I liked very much and will get for A. for xmas. post-apocalypse survival with a robot friend, a pygmy mammoth, and a giant mutant talking prairie dog with zap guns. It was pretty much perfect "middle-grade" sf adventure.

Read more of "Ra" which is a web serial science fiction alternate history where magic was discovered in 1970 and is sort of like computer science. It is hilarious in a particular way .... plot twist after plot twist.... mind blowing epiphanies about magic and reality and science.... and perfect techno-magic-babble that had me laughing uproariously.
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More PT this week. I am successfully doing the sets of exercises every day.

I still have the flu, tired and vaguely sick, fever varying between 99 and 100, yet am functional. Way more functional than when I wasn't sick but was having a flare up of joint pain. As I think this over I am undoing some hidden levels of blaming myself and worrying that it's my fault or I am specially wimpy or malingering. It is obviously not my fault and I'm tough as nails.

Also maybe I am just not hit that hard by it since I did have a flu shot.

I went out for an hour to the HRDA office party (figuring not contagious if I've had this for nearly 2 weeks) then home again and to bed.

Tomorrow, beta 11 release (specially extended for a week) And then to pain/insomnia therapy and then I will chill out and have a nap. If i feel up to it will go to stef's party. Then swim on the weekend. If I can work up to 2-3 times a week consistently it will be amazing

The portland work week hotel for 1st week of december has a pool. I am going to resolve NOT to try to go out to dinner with people. if i can last the work week sitting up and paying attention and getting back and forth to the hotel it will be ok. d. is going with me and will just work from the hotel. that is amazingly comforting as I won't be stuck and without help if things go wrong physically. and he is super comforting and good to come home to.

I can't tell right this minute if my ankles are stretchy-good hurt or actually hurt. But i ache al over . the PT today was partly some sort of weird pilates machine . and like 20 miutes of lying there trying to move just my lower abdominal muscles, which I am still not sure actually exist. holy crap that was difficult and exhausting. but awesome.
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Still running a fever, taking it super easy, doing little bits of housework. I sorted out several armloads of books and filled up the little free library. Played Monument Valley new levels last night with Milo and then again by myself this morning.

I had a brief silly moment of wondering if I have listeria then realized that some sort of flu is more likely. Still it gave me pause and I thought some more about going off the Enbrel experimentally for, say, 6 months.

Read a couple of Tessa Dare romance novels and enjoyed them.

Not realy up to anything creative. It was all puttering and reading and resting. Very domestic.

I was ambitious to go to the hardware store and buy a large flowerpot for my philodendron in the living room and re-pot it, but realized this is unwise, I'm still too sick, maybe this is a situation where not pushing anything will keep the bronchitis away, or whatever.

I got myself a new pair of long underwear as I realize the REI sale extends to the online bit not just the store. And got milo a new pair of jeans off amazon. Levis 513 slim or the gap skinny ones fit him best. Last week he showed up wearing ada's black jeans that have black brocade-style roses all over them and he looked so fantastic. it was subtle, yet glam. he had not noticed that his pants were flowery. Somehow,he has ended up with more pants at his dad's house than here. How does this happen? He comes here in one pair of pants. He leaves in another. How? Maybe there was some point where he was packing to go on a trip, or camping; packed here and unpacked at his dad's.

Earlier this week while going up the hill for groceries I went to the kids' resale store and cruised it for pants for him. but came out with a red velvet dress for ada instead. this may be the very last moment of usefully using up my store credit there. The batch they are both wearing now is the top range of their sizes, so I can resell them and get credit and use it for my nephew... It was so handy to get them cheap clothes there. I'll miss it!
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I have been on a fic-reading kick this week. I read Born from the Earth, which I highly recommend! Will never think of Iron Man the same way again. It is so good!!!!!

Then went looking for anything either crossover or AU that has, well, anything I recognize in it, that is long enough to keep me occupied for an hour or so and that has good ratings (high number of kudos or comments) I could almost go watch or learn something about Teen Wolf just in order to read all this stuff. My search resulted in lots of Marvel and LOTR fic and some very odd Pern AU. Pernlock... OK! I don't even like Benedict whatever, but naturally, he improves with dragons, knife fights, and so on.

Missing delux who used to exchange all the silliest and most amazing of it with me.

Right now am in the middle of an epic rewrite of The Hobbit where Bilbo goes sort of back in time to live his life from age 50 onwards again to try and fix everything so that his friends don't die; it's very sweet.

Recommendations welcome! I am especially into novel length or series length works! Angst and drama ++!
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I have been walking around the house more and doing much better! Today I went to the warm pool over by the zoo where my new PT has a group session. Adventure out on the 23 bus. The pool staff I got to on the phone (2 different people) could not tell me anything about how to get there by bus, where the bus stops were, whether there were sidewalks or what.... Totally new concept I guess. It is partly a rehab pool and partly a place where people take their infants and toddlers for swim lessons. The bus ride was pleasant - not crowded and one of the old-style lower buses with the fold out ramp. The rehab/rec center is sort of a whole complex, like the nicest possible community rec center. there are gardens and gyms and other things like art rooms and i think maybe some domestic animals. So it is a place where if you live in a group home I think you get taken there by bus.

The pool was super super nice. it even has a window that looks out over the lake merced area. it was Actually Warm, over 90 degrees, and the entire room and locker rooms were also not uncomfortably cold for me. I have never experienced that outside of a spa. The PT was nice. The group was him, two of his surfer friends with injuries (one who is recovering from a high spine injury), an older guy with sciatica, and an older lady who has been going there for years and mostly hung onto the edge. I was so excited and happy to be able to move around well in the water and stay in for long enough for it to be worth the entire trip. (Unlike ymca where it is so cold i can't stay in very long) That said I would still love it to be EVEN WARMER. When i got out I started shivering and my teeth chattering though I wasn't uncomfortable in the pool. Maybe as I get more in shape I'll be less cold sensitive.

I did lots of work on gait and walking around, sideways, backwards, doing squats, and some sort of arm lift with a kickboard that strengthens your core muscles. I had great trouble keeping my back in the right posture but finally could feel how it should be. I have forgotten how to walk right and be correctly upright. My pelvis just doesn't want to do it. Weird. I found this unexpectedly upsetting. It felt amazing to be exercising though.

As I was leaving the locker room filled up with old ladies with obvious bad hips or knees and they were very nice and cheery. i could maybe eventually go to their class. I started crying though a few times over today. I had complicated feelings as it pointed up to me that my situation kind of sucks. There were like 30 women older than me hobbling around with canes but they all walked into that complex somehow from a car or bus, went up a hill or a ramp and (harde than it sounds) got undressed and were prepared to do it all again in reverse. I could imagine 3 years ago before my ankles blew out that I could have daringly parked close and walked in, maybe. Now I can't imagine that and wouldn't be able to do it in the manual chair either. I guess the old ladies in my comparable situation might not have had the resources to get to the pool at all. But, the ones who were there, I can't keep up with them. I know it isn't about compareing yourself to anyone, but because I stick to the same routines.... sometimes some of these things aren't obvious to me.

i woudl like to go to this pool as often as possible !!!!!!

I am dreaming of being able to take a month or even 2 off work (i woudl totally do it unpaid leave) and swim every single day. But, what if I did this, and then fucked myself up worse, or, without it being my fault had some sort of flareup and then was off work and still unable to rehab properly? I think I could do it though. Even if I messed it up I would still be stronger and maybe my bad leg would not go off the rails so often. i thought of all the times i have been on medical leave or been super messed up and not been working. always, as soon as possible I was working again (or, in school and working part time) I think there were a couple of months in 2002 or so when i didn't ahve work, still had childcare full time, and drove around and wrote a lot of poetry. Other than that I have never been able to make the space to do lots of PT.

i am still super healthy1 which is so lucky. like my cholesterol and blood sugar and blood pressure and organs and everything work fine. well except my stomach. other organs fine. i should swim all the fucking time!!!

it was glorious to walk around and feel my legs do al the things. i am sore now but didn't damage anything. it is like actual muscles being used sore. tomorrow wil be v. stiff. nothing is spasming, popping, or grinding, or feeling "stuck" (I'm looking at you, right big toe) . other than my bad leg nerve thing, which isn't any worse than it was yesterday or this morning. buzz buzz.

my book The Pain Survival Guide: How to Reclaim Your Life, which I am halfway through and like very much, has a chapter where it reminds us that our pain is not interesting to anyone but ourselves and we should not talk about it all the time and not complain. Other than this chapter the book is brilliant. on the other other hand, other than here or to Danny I don't go around describing my pain. I don't think. i have tons of other kinds of conversations and listen to people a lot. danny says he does not mind and we can commiserate on our ailments and i certainly talk with him about other things too. so, good. and, take that, pain survival guide.

I felt very grimly determined but also this time, more hopeful than usual that I can make the effort and stick with it, at least once or twice a week. maybe then take a month off in the early spring and try to strengthen up? is this an unthinkable plan? i will ask my doctor what he thinks in a few weeks. i know i can't take medical leave to do this because obviously, I Can Work. i thnk that i will work much longer in my life in general if I take time out and successfully strengthen up.
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I get somewhat annoyed when I see people saying "stay safe". What the hell people? Is the point of life to stay safe? Since when?! Especially weird when saying it to women who get death threats on Twitter. What are the suppposed to do to stay safe? Go into hiding? I mean, I've seen several people DO that. I fucking refuse to ever do that. Seriously fuck it.

Also weirdly irksome, when people say it to journalists going into war zones. I know what people mean is, I hope you come back ok from this. Still, if they were planning on staying safe they wouldn't go into a war zone to report from the front lines.

Annoying recent fad of language. I don't think I ever heard anyone say "stay safe" before about ... maybe 10 years ago, maybe less. When I hear it I hear a double message of "I'm worried about you" and "Be afraid and in fact I'm judging on you right now for not being afraid and behaving cowardly enough and whatever happens to you is your own fault"

Curmudgeonishly, me.
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In a book I'm reading right now (the dragons in Detroit one) the protagonist notices "the smell of wealth" as he joins a horrible sibling for dinner. apparently the smell of wealth in this fancy restaurant is hardwood and truffle oil. Fair enough. I suddenly wondered what the smell of wealth would be or not be for different people.

Things that are definitely not the smell of wealth:
* Pine-sol
* Patchouli
* Feet smelling carpet in the YMCA dressing room
* Those air freshener candles in the gross smelling aisle at the drug store

Add your own to this list. It has a lot of potential.

I then had a memory not for the first time of this amazing lady I used to work with. We didn't work together directly, but were acquaintances from different departments and I would be around in her in various work contexts. She was a couple levels of hierarchy up from me. Once at dinner I was suddenly struck by realizing she was wearing like, a super simple sheath dress and some sandals and nothing else noticable, with her air in a ponytail. But she looked wealthy in a way I could not fathom. Why did she look like she was sort of burnished and definitely rich. It came down to I think, plastic surgeries, and super white teeth, and years of very regular spa visits. Like she must have got not just her hair cut every week but had the full run of things that can happen to you in a day spa/salon (a thing i was only dimly aware of at the time. ) She absolutely glowed. Nothing was out of control or out of place and she also projected an air of being extremely relaxed. She was also *nice* all the time. It was very odd. Her simple dress was also very structured and perfectly tailored to her. If you look around in the world, most 60 year old people don't look like that. I think celebrities must do this high level of work to look super polished. (this was near L.A. so she wasn't the only one to look like this) to me that is what wealthy looks like. They look like perfect dolls of humans. It isn't even the amount of consistent long term labor that goes into it. It's like the lifetime of never dropping that labor. And being really relaxed and comfortable because of leisure, at the same time. It was just their normal. It goes so far beyond a regular person's dressing up for an occasion (like, you can't get there by just doing your hair.)

Middle class people (when I'm definitely in middle class landia and not strange silicon valley land where different signifiers hold true) look like the current season's mall clothes. This is unmistakeable. Most of the people getting off a plane from Dallas or Houston will be wearing a current Mall from head to toe and it won't be more than 6 months old, not a fray or an inkstain.

This has been my painkiller fueled ramble of the day. You're welcome.
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I am now on book 3 of this fabulous SF series. Miserable interdimensional castaway ingenue meets psychic teenage space ninjas! There are space cat ghosts! All the exclamation points! It's ridiculous in a very pleasing way.

Spoilers below.

Read more... )
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Worked myself up to deciding to just like POWER THROUGH and go on this two week trip to mexico city and bogotá yesterday, started planning. My one moment leaving the house was 15 horribly painful minutes scootering to the mailbox and 2 blocks beyond to test. I could not take sitting up and the rumbling of the sidewalk on my wheels. I have a new (ish) intense/ dull/ sometimes sharp pain in my lower spine, separate from the sacroiliac pain. In theory the steroid burst might kick in over the next few days or week. But I can't face the pain of travel, trying to keep up, managing to get food and going to sit up in offices and stuff and be around strange people trying to front while in this much pain.

Super sad to miss this trip and miss out on meeting new interesting people and participating and throwing in my 2 cents and being feminist power for good etc.

it is going to be embarrassing to call off my trip 1 day after saying to everyone at work that i am doing it.

Benefits (glad game style):
* some double union events i would have otherwise missed (and... frankly might still miss, it still takes me heroic effort to go out, i gotta front tomorrow and then thurs. night if i want to go to pioneer awards, which i do)
* 2 weekends with milo i woud have missed.
* infinite take out food
* uber cabs to places at tip of fingers
* will invite friends to come over
* will not be in in the rain at 7000 feet in bogota or like trying to scooter over cobblestones or some dumb shit like that
* Not like fucking up at my job or losing my job or having to go on disability.
* maybe i will take a day off and work on some poems or a new translation to cheer myself. if it is possible while i'm in this much pain.


OK peace out, i am sad and upset and full of grief.

Not getting younger or any better.

Sad that my ankles were maybe hopeful for a couple of months there and i was starting to almost believe they could " get better" at least a few more notches and enjoying driveing and now I have pretty much no faith in that. Since I have a degenerative arthritis thing and my tendons are like turning into calcified dysfunctional whatever.

Worrying that i will not be able to keep up with 6 weeks of Beta rapid release at work. As usual, I will crap out during the moment of highest stress and crucialness. I have warned my boss about this likelihood a few times. Also, i am very annoyed this is happning right as i was asking for a level up.

Time to shoot up some enbrel for all the fucking good that will do. how can i tell if it is helping or not? fuck.

goal today: less painkiller, but more steady painkiller. had half a tramadol on waking up. Will take another half now. I did the same yesterday but endedu p taking codeine at night. Decreased night neurontin to 300 and ambien to 5mg over last couple of days, i thnk successfully (sleep quality still decent)
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Girding my loins to take some prednisone!
I had half of one last night (I think they are 10mg) and I have about a week of them.

I predict this will fill me with energy and make some of my joint pain/exhaustion better but not fix my ankles because, fucking ankles.

We'll see.
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Exhausted even getting there. Totally running on fumes. Dr. F. was very nice, as always. I talked about being in mid-flareup and my ankles especially losing function and being extremely painful.

I am back to wearing the walking boots, but it is difficult to get around the house or stand up (or sit up, really, for long) even with the boots on. I am also wearing the night boots. They are sort of intense but they clearly work. I can't tolerate them all night.

He said I should be in the ankle boots for at least 6-8 weeks. Bummer. Ankles are slow. Mine never healed up but I thought since they were feeling a bit better and I was driving, walking with a full stride and pushing off with my foot properly, that maybe they would get better. Then I told him that I worry it is my fault. But since it seems like an over all joint pain flare up that is probably silly. He said it is autoimmune and not my fault. I still feel like it is my fault even if that is irrational.

Dr. F. said my ankle MRIs from last fall showed damage. I think the ankles got a bit eclipsed by my stomach issues in the late fall and I was also switching doctors. So I heard about one ankle but not the other and no one including me really followed up. The MRIs showed moderate achilles tendinosis and posterior tibial tenosynovitis. The right ankle has some longitudinal tears. Cysts at the insertion point (achilles) And cysts in the heel bone.

I felt some odd relief that there is outside confirmation that there is a problem other than my saying that I am in horrible pain and can't walk right. I worry about the cysts in the bone. Shouldn't they do something about them or like check on them? Can they be fixed? Could this be the cause of some of my pain? Should they MRI it again and see what's going on? Can I get the nitroglycerin patches that they say have a promising chance of actually healing tendinosis damage?

Dr. F. is referring me to an orthopedist who specializes in ankles and he apologized for not following up earlier and was super nice.

We talked about pain and sleep. He advised me to keep on with the tramadol and tylenol and not be shy about just taking it all day. He gave me gabapentin for night time which I can take with ambien, from 300 - 900 mg to help with pain and waking up at night. Also, lidocaine patches which I've never had before. The lidoderm patches are rad. I cut up two of them and plastered them on my ankles, wrists (by the thumb -- always super painful for me) and the horrible spot on the outside of my right calf where I seem to have some nerve damage (peroneal nerve) Lidoderm is awesome.

He didn't know that ankle stuff like this is associated with seronegative arthritis (along with sacroiliac issues). I promised to send him some review papers.

I got much better sleep last night and am going to be working from bed for as long as I can manage it today.

Fluctuating between Mostly OK and small bouts of terrified crying. At least I know this time around how to manage. Also, I went to Vienna in the snow by myself in a manual chair with these fucking boots. So I can go to colombia and mexico in them too. I will give MozFest a miss though, sadly.

I am crying with frustration over losing driving, which I was enjoying. I drove across town to Dogpatch and went to some cafes to work a couple of weeks ago by myself and enjoyed it a lot. I drove with my friend Eileen 5 minutes away to my storage space and we worked on stuff. And I drove me and Danny and the kids to Fort Funston (15 min drive with no traffic) which was lovely. And I drove the first 20 minutes or so of going to Monterey with my dad, and then the stretch over Highway 17 in the dark because he was freaking out and I have driven it a hundred times even if it was years ago, so I am blase about 17 in the dark. I was very much enjoying driving by myself with loud music going all around me. The 80s and punk/ska CDs were the best along with the twee/pop/punk stuff like Los Campesinos. OK. I now can't even drive it across the street to repark it. There is no way. So I'm sad. It feels worth saving the car though. In 6 months Milo can do drivers ed and get his learners permit as he will be 15. Then he can drive me places. Aw yeah.

Glad I got to drive a bit and that I went to the beach with Val and also that I did the whale watching (which is the thing I keep blaming myself for along with driving, but i thought maybe the whale watching boat ride loosened up a lot of things/scar tissue...But I'm glad anyway)
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Took a slightly old gabapentin last night out of total desperation. It went ok. It did its nerve pain relief thing. A relief and yet then i was twitchy and weepy feeling and did not like the side effects. Which thankfully just turned into falling alseep and staying asleep instead of waking up in pain a lot of times. Yay? I still felt in less pain in the morning too. Half a tramadol + tylenol + some coffee (bad idea for stomach, but so helpful) NOw I am back home from the Mountain View office on the couch and still able to work but the pain is very distracting and I am close to the edge of Not Able to Work. I realize this means I need to cool my jets completely for a bit. But I want to go to back to school night. One more thing tonight and then I will cool it for days and days I swear to god. Too much pain. I am making an appointment to renew my Medical Use card and another with my regular doctor to talk about help for worsening ankle(s) and general pain control for my upcoming trip in October. I don't see how I could get through it without serious pain meds at least for night time. I am at the point where I will go beg my doctor for pain drugs, a thing I very much do not like to do. Will work for oxycontin. OK. I find these status updates helpful to look back on someetimes when I forget (near instantly once I bounce out of it) that I just recently had a bout of difficult impairment/pain/whatever. Goal: intervene and stop myself before I hit some sort of rock bottom.

I really don't want to go on nerve pain/ssris long term, it was pretty horrible for me even if it worked for pain. Maybe would consider doing it for a horrible month or two though. Effexor sounds like the pits but it is what the pain clinic recommended i think. Its side effects sound more horrible than cymbalta, which was intolerable.... :(

OR... maybe this leg pain is temporary from the injection and will feel better in a few days. fingers crossed?!
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My injection site/bad leg are truly hideous the last few days. I powered through the weekend on tramadols (about 3 per day plus codeine at night, and i had coffee 3 days in a row on vacation) Now down to only painkiller at night and tylenol in day but today I need to kick that up a few notches. I just want to lie on ice packs/heating pads and writhe around. God.

Lots of meetings today. I would like just a little cup of caffeinated tea....
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Back from the zinefest etc.

I am reading the three issues of an extremely good zine, Moonroot, some of the best writing I've seen in a while. It's great. I highly recommend it! fucking excellent!!!!

http://moonroot.tumblr.com/

Wish I'd had more time to talk with the folks at their table but I had to scoot off and go to the panel/discussion.

OK.

Onwards.
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Leg not too good, ankle also, painkillering up to cab to the zine fest. I am on a panel at 3pm.

Not sure if I can make it to Oakland today but I will give it a good try.

zach came by to show me his new scooter hacks, which are amazing, and brought me a really big comfy foam cushioned seat back with a wood panel backing, for my travelscoot, which will be really good if I hack it down to half its size and bolt it nicely on. Or maybe a large amount of velcro backing and some sort of clip. It needs to be as portable as possible. i am super touched he brought it. The new hacks are a big power converter so his huge 35 amp hour batteries can now charge a car charger port mounted in the scooter side. There are also new speakers which he scavenged from noisebridge and mounted on the back in older looking cases so no one will steal them. they fit perfectly! soon to come, a microphone (xlr) jack so he can plug a mic straight into the scooter speakers.

hannah's board game party was fun yesterday. i feel glad to hold my friends close.

whales

Aug. 21st, 2014 10:26 pm
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Forgot to say that the whale watching was great. I was not seasick at all. I stood up a lot and felt quite at home!!!!
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Today I weighed up what I had to do and considered: no kids to care/shop/cook etc. for till the weekend, no meetings past 10am, work stress pretty low right now. It was sunny even in the early morning. This is what I have been waiting for all summer to go to the beach or basically, anywhere at all that isn't my usual haunts. I would like to use my bit of extra energy not to clean the house, do laundry, or shop or even go do physical therapy or go to the pain clinic. It is time for a Very Mild Adventure!

I plotted a little and then took the J and N to the beach, worked and had lunch from a cafe. The train wasn't too bad, though it took an hour. Lunch at Beachside (food not as nice as it looked, no wireless, but outside tables) Then worked from the Java hut or whatever it is, and then once it got really sunny scooted across the Great Highway and went up to where there is a sidewalk (opposite the windmill at the corner of Golden Gate Park).

I walked a little way into the sand next to some sand dunes thinking maybe i could establish myself in some way looking at the ocean.

Sand is good for challenging all your small different muscles in your ankles and knees. Like with the whale watching, I could feel things happening in my ankles that were exciting but scary. Either I'm re-damaging them in horrible ways, or I'm breaking adhesions or scar tissue in there deep down. I can move my ankles better in the last couple of weeks, bending them further up. and have been icing them at least twice a day (often all night)

I could not get very far into the sand and the beach is very huge. I thought how I am lucky to get to do this and felt congratulatory for at least getting to the beach twice this summer at all (once with the kids to Aquatic Park which is super easy access and narrow) and glad that I picked a good day that was sunny and warm. Then suddenly felt sad like I could not bear the pollyannaish being glad thing. It is true I am lucky and can feel appreciative and yet I also have the horrible thought every time I do something that maybe this is the best it gets and I will never get any further onto a beach, or with walking, or whatever, and everything will get more difficult. Still, whatever, right, because I am also lucky enough to cope well with it and have a ton of support, skills, privilege, job, etc. to make things extremely pleasant and easy. And, a month ago I could not have done this as I was still too exhausted and weak from not being able to eat/gastritis/esophagus or whatever it is. Fuck, 2 weeks ago I was also getting over a cold and was hapy just to be carted along on yatima's errand. (which was great... and took us to the presidio and beach side both... but i was decrepit.) So obviously I felt happy to be able to have an independent outing and my usual pride in being bad ass enough to go across town in my tiny scooter. Take that, FEAR. I felt in planning it that I was brave enough to do it because the scooter will fit into a car and I could call a taxi which woudl actually come get me, if I got so tired that taking two trains back was daunting or if I hurt myself by accident.

BUT I thought, well here I am alone at the beach in a desolate spot. No one is looking. Perhaps I could just have a brief cry about it all. I felt some grief and loss. I wished i could have been at the beach on the east coast where my family was a few weeks ago, and there would be beach roses instead of eternal west coast ice plant/sea fig. Everything would smell "right" and would be lovely though sad in other ways. Mostly I just wished I could climb around and run around in the sand and go down to the water and feel more free to explore as I very much like to do. I cried a bit for when we were at bean hollow last week with my dad and I couldn't go look at the tide pools with moomin though I really wanted to. At least he did what i told him and went without me and had a good long look at them on his own. OK. So I cried on the beach for 10 minutes and felt very self indulgent. I wished I could just be in a sad mood for the rest of the day. I thought how nice it would be to have a strong drink or be on the super duper drugs they shoot into my veins when I get my back injections. (I think some combo of valium and other things) Then I felt better and went back to the cafe and worked some more and got a VERY crowded train home.

I am still kind of weepy to be honest.

I plotted future trips and thought it would be nice to go out again but allow much more time, and go all the way up to cliff house and the nature center/overlook/gift shop/coffee bar just above Sutro baths. Or even further and scooter all along the walkways around the point whatever that is called which I haven't been on for years.

It was a tantalizing but not really satisfying beach trip.

I'd like to go to Moss Landing but have a magic dune buggy to go out along the beach and also be able to kayak through the slough there without hurting the hell out of my hands. Not sure if I could really do it anymore. Maybe in a tandem kayak. An could it be an invisible dune buggy so I could chill the fuck out and get in and out of my wheelchair without 800 people staring at me and stuff.

I talked a good long while with a guy whose mom had a stroke and has a jazzy, at the train platform behind the safeway. he was very nice and we discussed the intricacies of scootering. She needs a joystick controller really and more stabilty than a travelscoot but there could still be smaller powerchairs (she is small) that fold up. Also, an off duty muni driver at the java hut talked with me a while about his wife who has MS and another kind of large scooter that she has trouble fitting anywhere. She would like something more portable but insurance will not pay. She could handle or nearly handle something like my scooter. I got him to drive it around a little bit to try it out. Also, I talked with many, many other people from kids to surfers to random slightly limping older ladies who all liked the scooter and thought it looked cool and wished they had one to play with or get around better on. I should keep count. I always have slightly ambiguous grumpy feelings about the people who seem to approve of me extra because I take up less space and "look cool". Thanks but how about if I didn't, would you just hate on me or what. I try to take it as best as possible and I also utterly don't mind children who are like HOLY SHIT I MUST DRIVE THIS FUN TINY MOTOR TRICYCLE THING while their parents are scared I will be angry. Hahahhaa.

Day of Feelings!
badgerbag: (Default)
Feeling a bit better and I am able to eat more and walk around the house. Huzzah!

Not out of the woods yet but as long as I can actually eat, things are great.

When you stop eating things get scary kind of fast!

Random doc not actually useful; kept recommending naturopath, betaine hcl. She started the ball rolling to switch my stomach meds to some fancier one, and did some blood tests, which is fine. I didn't have a lot of expectations. I just wanted to establish contact and some sort of baseline reality because last time things went so badly.

I read The Stone Boatmen, The Savage Detectives, and a book about Korean court life and also some very stupid girls' boarding school books by Jean Webster (Just Patty) and Alta's memoir called "Momma" which was very good but a bit devastating. Stone Boatmen felt like a long strange dream. Good but won't be for everyone.

Played some MTG with Moomin.

I sat in the sun on the front porch yesterday and had the energy to start dusting off and sweeping under all the flowerpots with a little whisk broom, which I could do gradually and while sitting down next to the flowerpots. Several of them need repotting or other major care. Then I swept off all the leaves (though they are still on the stairs) Had giant allergy attack from having temerity to touch outdoor things. As usual.

I also fixed the garbage disposal, which was full of the remains of fish soup making the house pretty gross smelling. The nice plumber emailed me how to do it (unplug it; stick an allen wrench underneath in a little hole in the center of the disposal; turn the wrench till the motor turns with it and the whole thing un-jams; hit reset button)

Now my porch sitting spot is much more peaceful. I plan to inhabit it some more today. I would also like to clean off the desk (another thing I can do mostly sitting down)
badgerbag: (Default)
Sorry for the endless physical complaining. But here is some more.

I am only able to move around slowly and am sort of having to pause for breath. Like even sitting up or tring to get dressed. I went out to the doctor today (but it was the wrong day..... sucky) And coming up the stairs I had to actually pause at each step, going very slow already, and have an extra breath. I don't understand what that is from. it's like a sensation of pressure (in my chest and throat and sort of in my head, like a head rush) or like i'm going to faint. Maybe from gas in my stomach or some sort of swelling... like i can't get a deep enough breath? I could test this with a peak flow meter, maybe. Maybe it is like low blood pressure? am i not hydrated enough? It is not something I've experienced outside of these bouts of gastritis and reflux.

Reflux, pain, etc. I am still handling this without painkillers. So far.

The stomach pain is very intense and I feel like i am just sort of clutching my upper abdomen/chest and thing to keep it still when i move around.

today I had warm milk with condensed milk in it, yogurt, and a spoonful of hummus. I am not eating enough or really drinking enough either. How can I do more, I don't know. I am worried this can go downhill kind of fast. It already has. But I mean, more downhill. Last night I was like, ok realistically I'm not working this week. But I can't tell if I'm getting better and if i'll be working next week. I have to just be ok with that uncertainty.

Usually when stuck in bed I can at least do things like get up and water my plants. That is getting harder and harder. Not easier. Eating also not easier. I am about to lose the ability to put on my pants standing up.

oK, I have another dr. appt tomorrow with a doctor i've never seen. This will not do any good. What are they going to do. Probably a blood draw and refer to gastro doc. I would like to see a new gastroent. as my last one did not inspire confidence.

Food is so amazing to taste and stuff, I miss it, and would like to eat it. Two weeks ago I could eat a hamburger.... omg.. .hopefully I will magically heal from this again.
badgerbag: (Default)
Other than going to the drugstore I've been in bed for 3 days not even really walking around the house more than to get broth and juice. Napping a lot. I have to face up to, if bed and not talking or doing anything for the weekend didn't fix this I'm probably not going to be able to work this week. Must write to boss + coworkers. I don't want this -- I need to learn the stuff i was going to do and be responsible for this week. Anyway, i made a dr. appointment for Wednesday.

I am on 40mg of pantoprazole 2 tmies a day, zantac 150s twice a day, and some random amounts of Tums. Sipping on carafate when the reflux gets bad.

I have a big pillow under the head of my mattress wedging it up and 2-3 pillows so I am more upright. I can't tolerate that position all night (but have successfully avoided eating or drinking in the evening)

No painkillers since (I think) Tues. or Wednesday. If this keeps on much longer I will need some though. But I avoided them because I don't want to be annoyingly told that maybe this is all happening BECAUSE of painkillers.

Annoyingly I am achy from lying in bed but moving around/walking makes reflux worse and is basically painful (like my stomach/esophagus is being jolted around) so I can only walk in a slow shuffle.

fri. egg, milk, chicken broth
sat. egg, yogurt, yogurt drink. apple juice.
sun. egg, juice, spoonful of hummus

Despite this I have mostly kept in good cheer. Read more stupid Arthur Upfield books and another Phryne Fisher mystery, which was pretty terrible. Read Star Fraction and Stone Canal. Star Fraction was good though I got irked with some things. Stone Canal was irksome all through. Cassini Division might be a bit better (just starting it)

***
Monday: finished cassini division. halfway through Sky Road.
my sister came over... we got some groceries. I ate half a zucchini and an ice cream bar. (an improvement on endless yogurt)

Napping a lot. I can just doze off at any time. I wonder if there is any way they can actually figure out if this is immune/arthritis related or if it is just that my stomach is trashed from years of NSAIDs and will always be susceptible to gastritis?
How do people deal with actual ulcers ? I imagine they must be worse for pain.

December 2014

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