augh.

Apr. 28th, 2009 11:08 am
phinnia: asian person demonstrating proper use of facemask (birdflu)
good: neuro's medical assistant faxing referrals.
not good: stupid elevator broken AGAIN. biopsy negative, so now we're back to square one with that. today's plans derailed entirely. what to do now?
phinnia: smiling dolphin face (house/wilson-yay!)
First appointment: orthopedic surgeon.

Short answer: complete waist of freaking time. Nothing he can do for me. Suggests I go back to rehab clinic for more antispasticity meds. Considering that when I initially went in to rehab I could walk mostly normally (for someone with CP, that is) and actually get up off the floor and use my arms to pull myself up on things and not fall down or have to lean on something constantly, I am saying that the antispasticity meds can go fuck themselves with my compliments, and the botox can help (considering the lack of leg muscle control for the first few weeks after the botox treatments has leflt me in some extremely humiliating situations which I would rather not discuss. All I really wanted at the beginning for all of that was physical therapy. I have the stretches the PT taught me and I have information on water fitness classes. I think I am done with rehab, THANK YOU AND GOOD NIGHT.

Then I came home (no, really, it was actually much easier to come home between appointments) and had decent but not fantastic mexican food, coffee and mini cheesecakes. Went to local lesbian bookstore; did not pick up lesbians, but did manage to get some cards for people and a very nice book on the best buddhist writings of 2008. I'm hoping to get either enlightenment or material for new monk stories.

Second appointment: rheumatology.

They got the test results back. Some of them are abnormal. Now we have to run those tests again. Preliminary diagnosis based on bloodwork and some preliminary questions/facts about me point to sjorgren's syndrome (which wins the award for the least intuitive spelling in an autoimmune disorder) which (i'm guessing) is probably comorbid with some flavor of arthritis given that it looks and feels like my grandmother's arthritis that started when she was about my age. Also I probably have restless legs syndrome and they can give me something for that, which is nice because it feels like lightning-based needles are running through my thighs, which is a bit distracting when you're trying to get a bit of a nap.
So I get tested for that, and I have to go back to the dentist and do tests on my saliva, and eventually I may have to get a cheek biopsy (not looking forward to this part).

But yes. surgeon useless (except possibly in the 'feeling better about not requiring surgery for quite some time' bracket, so not so useless i suppose) and rheumathologists have fun theory that explains things, and the theory has been brought over by (it looks like) Swedish people, which wlil make [livejournal.com profile] bork either happy or sad, i'm not sure.

hi, how was your day? the inauguration was cool. ooh, a shiny thing -

stirfry

Aug. 8th, 2008 10:39 am
phinnia: smiling dolphin face (house/octopusbox wilson)
[livejournal.com profile] tallin, last night just before bed: "Where's the coffee?"

Me: It's in the cupboard at -

Tallin: No, no. Not the new stuff, where's the jar of coffee? That was beside the coffeemaker?

Me: *eyes widening* THE BABYSITTER.

She cleaned the kitchen. Marvelous. She moved the coffee.

It was a frightening ten minutes until we found it, tucked away in a dark corner probably the furthest place it could be in the kitchen from the coffeemaker.

WAUGH, PEOPLE. YOU DO NOT MESS WITH THE COFFEE. CAFFEINE = SRS BZNS.




Today I take the child to the DENTIST OH BOY.

And and AND I got the ship notification for the "Snow, Glass, Apples" BPAL with the Neil Gaiman chapbook NOMNOMNOM.

And! I did not get enough sleep! Because there was the coffee incident, and then walking across the room on the way to bed my ankle decided that walking was just NOT ON and quit, right there, and I bruised my breasts (no, really!) by falling into the edge of the sofa, and ... yeah.

It was one of those nights. Not in the Eagles-song sense.




Clickies! Yes, have some:

the stonehenge clock. It has ROBOTS involved.

international dome house. Oh god, do I ever want this. It would be like living in SMURF VILLAGE ALL THE TIME.

From the most awesome and excellent [livejournal.com profile] takaal: the velveeta rabbit. love. <3 <3

From the far-more-talented-than-your-humble-servant [livejournal.com profile] yuki_onna: (OMG can she WRITE, seriously, I've lost track of the number of times I've told friends to READ HER BOOKS): How to sleep with a writer. Carefully, in one word. I agree.

[livejournal.com profile] haikujaguar is doing another One Card Draw. She is one of two people who I will do divination with ([livejournal.com profile] deyaniera is the other), largely because she is SO RIGHT ON. If you want a card, the best way is to kick some money into the tip jar. It's worth it.




Seaners is petting the little muffin-top bit of skin at the top of my shorts. It's cute, but weird. Just like him.

Now he's humming and staying 'hi' in context and being offended on dad's behalf for those THINGS attacking his head (ie: headphones).

And again, paratransit sucks. AUGH.
phinnia: smiling dolphin face (house/wilson-antidepressants)
Today's fun and excitement: a trip to the primary care person, who seemed kind of concerned that I was still having breathing problems from last month's bronchitis. Which is kind of good, because frankly I'm kind of concerned about that myself.

So I won an all expenses paid (by my insurance) trip to Blood Draw with a stopover at Radiology for an exciting Chest X Ray (again).

And for the low low price of three vials of my precious bodily fluids, I get to have a thyroid test, a heart test, a blood count and an iron levels test! Don't you wish you were me? Sure you do.

Friday is when the big fun starts, because I have an hour-long pulmonary function test at the exotic Hospital which means I don't get to use my inhaler at all Thursday and I get to be put through some kind of exotic torture and show off my fabulous breathing skills.

*bows* Thank you, thank you, hold your applause. I'll be here all week. Tip your server, please, and enjoy the rest of the show.

aftermath

May. 10th, 2008 11:55 am
phinnia: asian person demonstrating proper use of facemask (birdflu)
Dearest darling [livejournal.com profile] machineplay,

Your awesomeness as always is boundless, but especially right now, because you were the one that told me about those lidoderm patches, which in turn meant I could actually SLEEP.

Love always,

L.

Dear [livejournal.com profile] shellynoir,

You are made of random and win and awesome. Thank you so, so much for picking Seaners up at Emergency World Land and taking him home so he didn't have to sit through that. I am extremely grateful.

L.




Thank you for all the fond wishes. I am staying off my feet and trying to avoid doing anything that would make me go back to Urgent Care World AGAIN. If I ever wake up there will probably be writing this afternoon.

Today's fun and excitement: designer pubic lice. From Japan, of course. <3 Courtesy the most marvelous [livejournal.com profile] thewlisian_afer.

back

May. 9th, 2008 09:02 pm
phinnia: smiling dolphin face (rumi/future better than my past)
home now. tore the living hell out of my knee. hurts like omgwtfdjf;dshgewaiomv. Ace bandage + painkillers + ice. Ambulance ride was fun.
phinnia: asian person demonstrating proper use of facemask (birdflu)
off to urgent care again. this time I've epically fucked up my knee, as in, "I can't put weight on it". This means Seaners and I get to ride in an ambulance! OH BOY.
phinnia: writing a rumi quote on a desk (rumi/heart is a pen in your hand)
Boring appointment with pain management guy. He approves of the new treatment regimen (lidoderm patches as needed + diclofenac (a popular European NSAID, one does feel on the cutting edge) 2x daily) and wants me to see Primary Care Guy so I can take something for the damage which will inevitably be caused to my stomach by the pain medication. Plus I have to get blood work done every few months to make sure the whole bloody lot of this isn't slowly killing me. Look! An Outbreak of Medical Care! Awesome!

He wants to see me in two months - after I see the rehab guy, who I'm seeing next week - and approves of the spinal surgery thing or something similar. So we'll see what Rehab Guy says next week.

Whole Foods: Still full of Pretentious Nannies and Mommies, still overpriced, but they have a more reliable supply of glutenfree bread than TJ's does.

Am happy recipient of package! From [livejournal.com profile] tsuki_no_bara, who is made of win and awesome. (Seaners totally approves of the CDs, by the way, and so do I. He is Rocking Out in a very serious way (there is much jumping, bouncing, laughing and stimming.) Haven't tried the cookies yet, am hiding them from kid until after his bedtime: they have wheat in them, which is fine, more for me! THANK YOU SO MUCH, honey.)

Think kid may also have dairy sensitivity as well as gluten problem (and indeed think that dairy sensitivity may be worse than gluten problem). Totally forgot that he had to be on soy formula as wee baby because of dairy sensitivity then. Feel vaguely like lousy mother because of this. *laugh*

Apartment: disgusting disaster due to child being home on weekend. Hate cleaning, yes precious. Ankle feels like pain and death: can't put another patch on it for a while (they have to be 12 hours on, 12 hours off) so I'm just resting it.

Am trying to get good picture of cat playing with packing peanuts. No success as yet. Have several pictures of cat's butt though. Cat is obviously typical cat in that respect.
phinnia: it's a brain. in a skull. (brain)
So yesterday afternoon I started progressively losing the ability to speak in coherent sentences. I'd been feeling weird and off for a few days but I just kind of shrugged and figured I'd caught the kid's sick and kind of chilled for a bit. Minor spoken word aphasia has been a problem as long as I can remember, but this seemed worse, somehow - kind of foggy and weird and lightheaded.

Aphasia is an "uncommon" side effect of neurontin. So I called the pain clinic and talked to a nurse and she forwarded me to the doctor on call, and he called back, and it kept getting worse and worse until I couldn't say the word 'yes' reliably, and then we decided it was time for a trip to ... URGENT CARE WORLD!

(Note: Seaners did not get to go. Seaners hung out with the nursing students upstairs. He wrapped them around his little finger and had a great old time. One of them was also kind enough to both give us a ride TO Urgent Care World and even pick us up FROM Urgent Care World at 1:00AM when we got to leave.)

Yes! We spent 7 1/2 hours at Urgent Care World. It's a vaguely crappy theme park, but when they do let you go on the rides, the rides rock hardcore. Also the lines are really, really long.

So we got to Urgent Care World and were checked in by a Stereotypical Queer Guy. Chris told him my problem was 'aphasia'. He didn't know what that meant. There was also a large debate on how to spell it. I was able to, finally and with great irritation and effort, actually spell it FOR the man. The irony of this, in retrospect, was hilarious.

(If I actually had known it would have been gone in a short period of time it was kind of cool in a distant way. My brain was very foggy, but I could visualize the words on blocks or tiles in my head, and if I could slide enough of them together, I could actually make sentences with effort, as long as they were short. It kind of faded between worse and better - the bad moments I actually had to spell the words out in my head, but the good ones I could get as many as three or four word blocks.)

Other highlights of Urgent Care World:


  • Initial Bitchy Triage Nurse, who despite having read my fucking intake chart, almost didn't let Chris come in with me to get my vitals checked. Of course this happened to me during a particularly bad moment, because that's how I roll, apparently, and so he just kind of followed me in and snarled at her a bit and she went away and another much nicer and more understanding nurse came back. She was one of those "can you just make 'him' sit in a chair?" people. Fucking bitch.
  • Amazingly Hot Nurse who was just cool and was wearing a Threadless t-shirt and who took me to Radiology.
  • Head CT scan (I has a brain! Let me show you it!)
  • Riding on gurney to Radiology, which was wicked fun. If I worked at a hospital I'd just ride the damn things all the time. (Yes, I was lucid enough to be thinking about notes and things, because I am a nerd.
  • falling down due to seriously low blood sure while walking OUT of the ER. Another vote for my being Patient of the Week.
  • The neurologist, who was really cool. And now I know how a standard neuro exam works.
  • The reflux hell from not eating pretty much all day by the time I got home.


Conclusion eventually was that the increased neurontin + celexa + the hellbutrin mess just caused the brain to throw up its hands and say 'fuck this shit'.

So for the entirety of today I've been feeling like I'd been hit by a truck directly in the center of the head (the headache started around 4 PM yesterday and ended around 3PM today). but I have warm new pyjamas and have now had pizza and am about to try the nanaimo bars which were proxy-sent to me by my awesome girl [livejournal.com profile] machineplay (who also wrote me amazing fanfic for valentines' day) and I have BPAL (Pisces, which likes me very much, and two frimps, one that I've tried and loved and another that I may have tried but I'm not sure). So i'm okay now, and I love you all very much. <3 <3

We also had the dumbest babysitter evar today, and we've had some doozies, including the one that figured she couldn't catch sick from kids because the germs were too small (I am not making this up I freakin' swear). But I'll get to that later.

home

Feb. 16th, 2008 01:50 am
phinnia: smiling dolphin face (bunnystars)
home safe now. resting tomorrow. full report to come, stay tuned! there are funny parts.

woohoo

Feb. 15th, 2008 09:56 pm
phinnia: asian person demonstrating proper use of facemask (birdflu)
posting live from urgent care world. about as fun as it sounds. aphasia got ridiculous. no one knows why yet. feel like patient of the week.

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