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Surprise, it's your mitochondria!

I would like to state for the record that the doctors at the Cleveland Clinic absolutely deserve their reputation.

As it turns out, coenzyme Q10 is a very important part of your cells generating energy. Also, it turns out I don't make enough of it. I've been on supplements for about 5 days now. Aside from residual deconditioning effects (I have been forced to be sedentary for 5 years after all), I'm feeling better than I can ever remember feeling. I don't sleep for 10 hours and still feel tired, I can focus on things, I can think... I can only imagine what it'll be when I'm actually feeling the full effects of having normal levels (research tells me that will be anywhere from 1 week to 6 months from when we find the ideal supplement dosage). Once I'm stable in that respect, I can expect a full recovery. There's a possibility of lingering cognitive deficit, but the case studies all state that physical symptoms completely subside. I assume that I'll still need a fair bit of physical therapy to get past having been incapable of much movement for so long. However, a couple of the case reports specifically mention people rapidly going from wheelchair-bound to able to walk unaided, so I'm reasonably confident that it won't be any harder to recover than it would be for someone who isn't collecting obscure diseases.

Oh, you know you do.

I've got two invite codes for Dreamwidth. Anyone want them?
I am posting from the web browser on my new DSi. I am entertained by this, far out of proportion to the actual usefulness of it.

Learning time!

Or was that meme time? In any event, on with the show!

The Rules: Comment to this post. I will choose seven interests from your profile and you will explain what they mean and why you are interested in them. Post this along with your answers in your own journal so others can play along.

Interests chosen by rapier.

Catharsis - Let's start with the definitions I'm working from. Via The American Heritage Dictionary of the English Language, Fourth Edition:
  1. Medicine. Purgation, especially for the digestive system.
  2. A purifying or figurative cleansing of the emotions, especially pity and fear, described by Aristotle as an effect of tragic drama on its audience.
  3. A release of emotional tension, as after an overwhelming experience, that restores or refreshes the spirit.
  4. Psychology.
    1. A technique used to relieve tension and anxiety by bringing repressed feelings and fears to consciousness.
    2. The therapeutic result of this process; abreaction.
[New Latin, from Greek katharsis, from kathairein, to purge, from katharos, pure.]
We're looking primarily at #3. I end up in a lot of, oh, let's call them life lessons, that require a period of catharsis to recover from. I'm an artist because that's what achieves catharsis for me. When I manage something that captures what I'm trying to release (such as that swing set scene I did that one time) it's a perfect moment of it. Since it's something I frequently seek, I consider it an interest.
Fnord - You saw nothing. What interest?
Fucking your boyfriend/girlfriend - Because when you click on them, it says "The following users are also interested in fucking your boyfriend:" (or girlfriend as appropriate). That makes me giggle to no end.
Insane artists - This, as the kids say, is a twofer (threefer, technically). Depending on how you define "insane", I am one. To an extent, I think all artists are insane and have to be to be artists. Finally, I find the truly insane artists to be the most curious, Van Gogh being the most obvious and well known example.
Inverse chivalry - When I say inverse, I'm speaking in the sense of reversed in order or character. I like being chivalrous, but traditionally speaking I'm meant to be on the receiving end of such. I'll have none of that, so inverse it is!
Parenthetical asides - You may have noticed that I like digressing in the middle of my sentences (kinda like this). While it wasn't entirely a conscious choice to start doing it, it has been a conscious choice to continue the habit. I like it, I feel it gives a certain intimate tone to my writing, and it gives me a relatively coherent means of rambling.
Sexy brains - Smart people are hot. Thus, sexy brains are sexy!

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I just had the following conversation:

"Sweetie, please leave the pillows on the couch."
"No pillows on the couch, I can't!"
"Why not?"
"Because Kyra doesn't feel well." (She periodically slips into talking about herself in the third person if an idea is new to her.)
"So... you don't feel well, and that means you have to put the pillows on the floor?"
"Yep!"
"Hmm. I think someone might be taking advantage of being sick just a little bit."
"Yep!"

Ah, well. At least she's honest about it.
It's official. Postural orthostatic tachycardia syndrome, hyperadrenergic type. I've moved to 60 mg extended release of the propranolol and am pretty close to symptom-free. We'll see how I feel once we successfully cut more of the unnecessary drugs out of my life; first step is the oxycodone (thank god); we're stepping down over the course of a month and I'll get to stop entirely on my birthday. Lovely coincidence, that.

I honestly never expected this. For all the times I started sentences with, "When I feel better..." it was really just a way to justify getting out of bed each day. I never believed it'd happen. I don't think I can explain how amazing it is to go from not being able to walk the less than 10 feet from my desk to the kitchen table each day to feeling perfectly healthy with a single little pill. I'm no longer wholly dependent on other people. It'll take some time to recondition myself and have some stamina back, but I can't say that I particularly care. The important part is that I'm better and after being so ill for so long I'd given up on the idea of it ever happening. I'm not even sure what to do anymore. But I am sure I'll figure it out.

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A mixed bag of news, fresh from the front

First the sad story.

This evening one of the neighbors knocked on the door. A cat had snuck in to their shed. From our estimates, he was stuck in there for at least a month -- the last time anyone can remember seeing him around the neighborhood was about 6 weeks ago. We gave him 300 ccs of subcutaneous fluids (we'd had some left over from administration to a sick cat of our own). After that he was still severely dehydrated and had agonal breathing (which essentially means he was in a state perpetually minutes from death). After a few hours, Mom took him to the emergency vet; they took one look at him and said, "He's going to die." Fortunately, they do have a good samaritan policy and didn't charge us for putting the poor dear to sleep. His nails were torn and ragged from frantic efforts to escape the shed before he was too weak.

In far happier news, we have an extremely good lead on what's making me sick. The current frontrunner is Postural Orthostatic Tachycardia Syndrome. On Thursday, I saw my doctor for a regular checkup; I see the current MD every other month so she can keep up on how I'm doing and we talk about how my meds are. I mentioned that I absolutely couldn't handle the tremor anymore. Not being able to do any work was driving me completely insane and it had become bad enough that the act of standing up would literally shake the entire room. She put me on propranolol (a beta blocker) to see if we could avoid Parkinson's meds. I agreed that this was a good plan. Imagine my surprise when not only did the tremor stop, but so did most of the pain, confusion, visual artifacts (the sparkly lights I see regularly), nausea, weakness, and I even know nouns again. That's at half the normal dose, too. There are doctors at the Cleveland Clinic that specialize in this, luckily, and on top of that the current doc has seen it before. When I asked her about it she mentioned that she knows what it is precisely because she has another patient with it who came in much the same way I did. Years without diagnosis, stumping everyone... finally got in at the clinic and came back with that diagnosis. I'd mentally marked it as "something to follow up on" until I had such drastic improvement from the propranalol. Now I'm just trying not to get overly excited until I can follow up with the doctor I was seeing with the Cleveland Clinic who is supposed to be thinking on who to refer me to see there. Still, for the last two days I've felt human again. That hasn't happened in over 4 years.

And that? That is some damn fine news.
I am sitting here in my robe and pajamas, waiting. Today, I am waiting for court and all the attendant administrata of judges and paperwork to come to a head. Not in person this time, however, but via telephone. Thus the pajamas, as I find myself curious to know what it's like to address a judge while wearing a robe of my own, even if mine is red and fuzzy. In one half of an hour I will call the court and be on the phone for some indeterminate amount of time. Once this is done I will have a new box to check on forms.

Well, that was weird.

Kyra asked me to put a dvd in for her. I asked her to wait a minute as I was doing a few things inside my computer case and couldn't really stop in the middle of it. A minute later I look up and see that she has the dvd player open. I tell her to leave it and I'll get it for her in just a second. She says, "Okay Mommy!"

I get up, look, and she has not only put the new dvd in, but she put the dvd that was in there back in the correct case. I'm not ready for sneaky! I'm even less ready for her operating the tv and accessories by herself; that makes it so much harder for me to ration tv use for the day...

That was fun. Honest.

We made it. It was far from the easiest travel I've had, but we made it (and so did all of the luggage).

We made the connecting flight by literal milliseconds. The first leg was delayed for any number of reasons (the accident at DIA, a different flight had people who needed the connection, weather in Chicago...). My second flight was meant to leave Chicago at 5:45. We pulled up to the gate in Chicago at 5:45. I had to wait to get help to get off of the plane; even if I could walk, I wouldn't be able to wrangle a little girl, a car seat, a diaper bag, a backpack, and my messenger bag. We got things off and a nice airport employee got me in to the wheelchair, Kyra on my lap, and I held one bag and the carseat as best I could while he got the others and pushed me. We had to run (the poor guy!) from gate B9 to B17. We got there just as the woman at the gate radioed out to tell the plane to leave. I couldn't quite think of what to do, so I just exclaimed, "No!" She just stared at me for a second and then said, "Wait, are you ON that flight?" I replied affirmatively, and so she called back to stop them and there was a flurry of activity that landed me safely on to the plane and settled in. We left at 5:50 or so, almost entirely due to the amount of time it took me to get settled. That was a bit nerve-wracking but does make for a good story.

The rest was comparatively uneventful but mostly peaceful. Kyra was great for almost all of the flight(s). The only significant breakdown she had was when she woke up after a 20 minute nap (the only one she took) while we started descent into Chicago, and even then it was a couple of minutes and she was fine. Oddly, Southwest requires carseats to be in the window seat. I've never experienced that elsewhere and I'm not entirely sure why. Ah well.

We're settling in fairly well. Kyra seems in awe of actually being able to talk with her grandma without the use of a phone and loves her new bed and the idea of sleeping in the same room as I do. I'm doing as well as I can, I think. It'll get better as time goes on. In my corner, as it were, I have the advantage of having one of the most comfortable beds I've ever had -- last night I had one of the best nights of sleep I've had in years despite being in a strange place and alone. It took everything I had to get out of bed this morning because it's just that cozy. Now I just have to hope that my computer's in good shape. I'm using Mom's laptop until we get it set up. Hope everyone else is doing well!

Eep?

Sun Dec 21
Depart DENVER INTL (DEN) at 1:45 PM
Arrive in CHICAGO-MIDWAY (MDW) at 5:00 PM
Change planes in CHICAGO-MIDWAY (MDW) departing at 5:50 PM
Arrive in CLEVELAND OH (CLE) at 8:05 PM

I was supposed to leave Friday but took the offer to delay because of the snow and ice storms in the midwest.

I'm very nervous. I haven't flown alone since I was 19 (unless I'm forgetting something completely), and I admit I'm not too enthusiastic about going with just me and a toddler while I'm in a wheelchair. The layover is what worries me the most; I'll have help from the airline, but as these things go, if we're late getting in it'll be a tight fit to get my connection. I have to wrangle both of our carryons and her, and I have to keep her entertained for over 4 hours while she can't really get out of her seat and I won't have Sesame Street to show her. (I do have Sesame Street books on backup that she's never seen before, so I'm hoping that'll do if she asks for it.) I've told her we're going on an adventure and she says she's excited, but she keeps telling me "No, no airplane!" as if I'm delusional and imagining the whole idea there. She says this in the same tone one would say something like, "No, you haven't been to the moon, don't be silly!". She does, however, adore the thought of seeing her grandma, so if she starts to get upset my plan is to keep reminding her that that's what we're doing. On the less optimistic front, I have to check my computer in to the cargo hold. It's simply too big to be carried on to the plane as it won't fit in either the overhead bin (38"x11"x13") or under the seat (19.5"x16"x9" at the best). We have to hope that they manage to keep it intact and en route, but the conversation we'll have at the start regarding liability and replacement costs will hopefully help motivate them to care as much as I do.

Please think good peaceful travel thoughts for me today and extra calm toddler thoughts to top it off. At least Mom gets to pick me up at the gate; there are very small perks on occasion when one can not manage one's self.

I'd say "Here goes nothing," but I also don't have time to deconstruct why I don't care for the phrase, so feel free to fill in your preferred equivalent while I go finish putting the carry on bags together.
I'm moving to Ohio on the 19th.

It occurs to me...

I have yet to encounter any problem that can't be at least helped by ice cream.

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The silliest things can win me over.

In researching repair shops for my car, I broke into giggles at the shop that used the phrase "magic profit elf" on their website.

I think I'll go there. (It isn't just that, but it certainly helps.)

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Jul. 4th, 2008

I broke my glasses today. Naturally, the day that no optometrist will be open. This is also a curse, as it's already my back-up plan; normally, I'd wear my contacts (and have the glasses as a backup) but I've been putting off getting my contacts replaced. So, unless the epoxy magically works, I'll have a very blind and woozy day, I guess. Good thing there's liekly to be someone open tomorrow. (I hope my touch typing skills are good enough for this to be legible, too -- I can't see the screen or the keyboard.)

On a relatively light note...

It occurs to me, via recent experience, that I (still) don't understand most people. I don't understand the functioning of small group interactions in a non-intellectual capacity. I could go on at length about the social functioning of dyads, and yet in a one-on-one conversation with someone I don't know well I can barely keep my eyes off of the floor. I have no idea what I'm supposed to say, or do, or how to read common social cues. I feel like a stranger in my own culture when that happens.

The key, as in most things, is practice. It's a difficult problem; no matter how much experience I get, I don't quite have the ability that most people do to extrapolate experience to similar situations. I can do such things with books and time, but socially speaking it never quite clicks while I'm in the middle of something new. It does, however, get a little easier each time.

The real problem comes up when I'm nervous. I can make myself so flustered that new people never get to know me before I drive them off by not acting in what are, to others, acceptable or expected ways. It can take me anywhere from 5 minutes to 5 months to be able to relax enough around someone to feel as if I'm genuinely myself. While I'm lucky enough to have some good friends who have made it past that stage, I lose a lot of potential friends along the way in the period of awkward, occasionally sophomoric behavior that my discomfort engenders. On top of that, I often get so concerned that I'm acting inappropriately that I have, on occasion, made far too much out of it and either backed off too much or overanalyzed my own behavior to the point that it wasn't possible for me to relax in future interactions. I've yet to determine a workable solution for this.

Oct. 21st, 2007

We're throwing Kyra's birthday party today (her birthday is Thursday).  I oh so foolishly said that we'd barbecue if the weather was nice.  It's snowing; we're at 3 inches and counting.  I have only myself to blame (really, who thinks it won't snow in October in Denver?).  I'd light a fire, but we haven't had the chimney swept yet and I'd be afraid since the previous owners of the house didn't take particularly good care of anything.  I do hope it doesn't mean that people will have to cancel.  She's a bit too young to understand that.

Ah, well, she's still getting some good stuff today, even if she doesn't quite know that either.  I don't know how long it'll be before she can appreciate it, but she's getting her own computer with Linux installed (Edubuntu, for the curious).  I actually got the computer ready for her a while ago, but with moving and all that it was delayed, and I do believe this is the perfect occasion. (=

Meme time, oh yes.

First, learning about some interests.Collapse )

To the first three people to respond with a comment here indicating that you're interested:

I will send you a gift!  In return, all I ask is that you make this same offer to your friends.  It will either be something I make or something else fantastic that I think you'll like.  It's fun, so try this today!

RIP, little electronic friend

My keyboard is no more.  Poor keyboard, so ergonomically perfect, so extensible and grand for gaming, so full of life such a short 24 hours ago.  They've given me a temp to replace you, and this, this... thing isn't even a pale shadow of you or your abilities.  Gone is my ability to control workers where a number pad would be, gone my beautiful artwork wrapped around your keys, gone my quick and simple application shortcuts... and all that's left is a little yellow icon in my systray to remind me that you've moved on to some other, possibly better place.

Someday, another will come and take your place.  Someday after that, I may even forget that you are gone, that this future clone isn't really you.  But I know there will always be some part of me that remembers that things aren't quite right. 

-----

(This sort of thing is easy to write when you actually think about dead loved ones and pretend you're just talking about electronics.  No, no one died recently.)

Just a quick update.

We've successfully moved! We only lost internet for a few days, boxes are everywhere, and I'm exhausted but pretty happy. I've managed to unpack about a box myself in between bouts of stupid pain... but it's also a box more than I expected to manage. Hopefully I can at least get my desk back together tonight and tomorrow; that will let me breathe easier. Now, however, I am quite exhausted, so I will probably play games and follow that up with going to bed. I hope all is well in internet-land!
Some administrative notes to get out of the way. First and foremost, some may have noticed that I have done a fairly large purge of the old friendslist. It is nothing personal. Say it with me now: "It is nothing personal." One more time? Okay, good. Hopefully you got that. If you've been removed, it's either that I feel that we've grown apart so much in interests and the like that most of what I have to say is probably going to bore you to death, or because there's some reason or choice that's left me unable to feel safe with you having access to the non-public things here. I could make tighter filters, but I shouldn't have to. This is my space to say my things, and I can't have people about that I can't trust, even if there's not an actual reason for it. With that said, we're going to go over the first part one more time. It is not personal. No drama; I am a drama-free zone. I hope you guys can understand that I need to have this be a safe place for me to freely express myself. And, of course, you're still always welcome on public posts.

Secondly, and on a much happier note, the happiest of birthday wishes to one of the most wonderful people I know, oddharmonic. Some day I will remember to ship a birthday present to you before it's so late that it's embarrassing. Someday.

Now, back to your regularly scheduled blogging.

Jul. 19th, 2007

My apologies, my dears, for not writing in some time. I've also been very behind on reading and don't have much hope of catching up. If there's been anything important since you last heard from me, please point me at it. The back has been acting up and I've been neglecting many things.

Jun. 26th, 2007

Most of the entries in this journal will now be friends-only out of necessity. If you do not have a livejournal account, they're free and always available for signup, so I'd suggest you do that and let me know who you are in the comments here if I know you. (Comments are screened, which means that only I and the person who posted them can see them.)

If you do not get a livejournal account, you'll probably only see silly quizzes and very very pointless things from here on out.

Jun. 26th, 2007

Before we get down to any business, I've been tagged by the esteemed korvac.

List 7 songs you are into right now, no matter what the genre, whether they have words, or even if they're not any good, but they be songs you're really enjoying right now. Post these instructions in your LiveJournal along with your 7 songs. Then tag 7 other people to see what they are listening to.

Erin McKeown - Lullaby in Three/Four
The Eels - My Beloved Monster
The Mighty Mighty Bosstones - Over the Eggshells
Pizzicato Five - Twiggy Twiggy Twiggy vs. James Bond
Conjure One - Center of the Sun
Me First and the Gimme Gimmes - Desperado
Dar Williams - Comfortably Numb

Tag yourselves today. I'm too tired. (=

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il viendra bientot...

Organic food is great. I open with this because apparently, not everyone knows this. From personal experience, I can tell you that when I eat organic foods I feel better, I have more energy, and I'm a generally nicer person.

Now, with that out of the way, I have discovered a company that delivers organic produce weekly (and at a lower cost than purchasing it at the store). I have waited to tell everyone how fantastic this is because I wanted to get my box before I went on and on about how great it is. But I swear, I could just stand around smelling that box for days, because it smells that good. So, with that said, if you live in Colorado, Connecticut, DC, Delaware, Pennsylvania, Maryland, New Jersey, New York, West Virginia, or Virginia, check out http://doortodoororganics.com/. Here, at least, we can also get extras (for example, I got cinnamon peanut butter and some fair trade coffee this week).

To summarize: Organic = win. Inexpensive delivered organic = total victory. (And cinnamon peanut butter = awesome.)

Feb. 14th, 2007

In what might possibly be one of the sweetest things that's ever happened, Kyra gave me a giant hug just now. I was feeling a bit worried and looking for something on one of the bookshelves (not really related things, but they were both happening all the same). Suddenly, she ran into the room, wrapped her arms around my legs, and looked up at me with that sweet little smile that only little children can perfect. I smiled and said "Thank you, I love you too," and she giggled and ran off.

I am on reprieve, lacking my joie de vivre.

I need to learn to receive ukemi. Instead of rolling with the punches (snrk) I've been lying down and saying "ow". No more. I know I'll keep failing out of these dances if I don't learn.

I suppose it's probably a matter of practice. It's always easier with a master to instruct, but these techniques were developed somehow, so they can surely be developed again. I'm certainly dedicated to the idea, and so it shouldn't take much more other than a willingness to fail while I learn. I think I'm okay with that.

Of course, one could also argue that a better plan would be to stop letting people into attack range, but I don't see that happening. Someone always suckers a way in eventually, and I'd much rather be prepared.

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Cheery Notes

A very happy first birthday to the most wonderful girl in the world. It's really been a year.

Love you, baby!

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Whee! More letter-ness!

Dear Makers of RPG Video Games,

I understand that a video game is a difficult way to introduce a plot. However, I think someone needs to inform you that cutscenes are not the only method. Your stories would, by and large, do more if they were character-driven rather than event-driven, and it's much easier to accomplish that if you aren't forcing mental disconnects every 5 minutes with your damn cinematics. If I wanted to be forced into a story like that, I'd watch a movie.

Love,
Stacey

PS - If you don't do it, I will.

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It's not actually a lie, but it's still a good quote.

I just gave our favorite of the litter of kittens away. Bryan's still asleep, so I have until he wakes up to enjoy him not being upset about it. However, we needed to find more homes for them. We don't have the space or the money for 6 cats. And it was her or nothing, so...

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Humor is the greatest innate talent.

Kyra told her first joke today!

She said "Yeah" while shaking her head no. Then she waited to see what we'd do. When I laughed, she got this huge grin on her face. When I told her she was silly, she did it again. (=

Ah, baby humor.

Awkward Parenting Moments, #57

Kyra has removed one of her socks, and is about to become frustrated because she can not take a large bite out of it. Now I have to figure out how one explains that you can't eat socks to an 11 month old, preferably before she decides that the best way to express her frustration is an ear-piercing shriek followed by throwing the sock as far as she can. (Naughty objects go as far away from the body as possible, I've learned.)

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My ferret, Lillie, died last night.

Rest in peace, little girl. I hope you're having a good time with your brother.

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