Friday, December 29, 2006

In the clear

My neurologist called today and told me that my spinal fluid is clear. So as far as he's concerned, I don't have MS right now. He couldn't say anything about five years down the road, but my tests right now are negative. His guess was that I was probably knocked down by some virus. I really, really hope it's all gone.

I've been thinking about obsession. Does anyone else have that affliction? It's low-grade, but I definitely have it. Whenever I sit down to play the piano, I want to play forever. Like I mean quit my job and play the theme from "Brokeback Mountain" (super simple, just a progression of thirds with a couple fourths thrown in, but so, so beautiful) forever. I realize the market for such a talent is limited, but the feeling is overwhelming. But you know, I haven't even played in 3 days. Also, every time I bowl I believe I can become a professional bowler, even though I barely make it into triple digits and I bowl with any old green ball I can find.

The same thing happens with certain foods, like sweet potatoes. Every year, I go through a phase in which I rediscover the brilliance of sweet potatoes. I buy large amounts of them, smash them, roast them, salt them, marshmallow them, any number of things. But then when I'm done with them, I'm completely done. The last ones always go bad in the pantry.

I don't know why it is that I can't just be normal. I just have those two settings: On and Off. Can anyone give me some advice?

OK I'd better get ready for work. I think big news is happening again as I write this.

Thursday, December 28, 2006

One miniature step back

Well, I may be going a bit too fast, because last night at work I started to feel dizzy again. Not very much, and not for a long time, but I definitely recognized the eye craziness. The only way I can describe it is that I can feel my eye movements all the way down my body, into my legs. Anyway, around 9 I went to lay down for a little bit because I felt really tired. About 10 minutes later I came back, and that's when I started to get dizzy.

Still hopeful for today.

Wednesday, December 27, 2006

Yep, I'm back

Tonight was my first night back after 4 weeks away. I felt great. Our A1 designer was sick, so I moved Josh over from Biz and asked Ryan to do Biz. The night was incredibly slow, and Tim and I even hoped for news at the beginning of the day. Well, after he left, it happened. At 11:49 the alert came over: Gerald Ford died. There was at least a moment of shock, let me tell you. And then I spoke it out loud: Gerald Ford has died!!!

We hustled and got the brand new A1 and 3 other inside pages out around 12:30. It was sort of a blur, but I do remember singing, "We are the Champions" just after the A1 black was clicked. It was a wonderful night to be in newspapers.

Monday, December 25, 2006


Well, Jeffrey's napping in the big red chair, a sure sign of a successful holiday. My mood, like my belly, is full but contemplating. We had a quiet morning for gifts and treasures, and then a lovely, lovely afternoon with friends and food and raucous conversation. Fun for us, terror for the cat. Also something I never could have contemplated a little over a week ago. I got tired once this morning while cooking, but then I sat down and rested my head and then everything was fine again.

On this side of the holiday, I wonder what it is that makes everyone so crazy go nuts. And that includes me. I mean, I'm a strong believer that everyone is crazy anyway, but something about the holiday just turns that up to an 11. For about three or four days, I was in a major, major funk. I think maybe the holidays, like alcohol, amplify our inescapable essence (please don't copy edit this sentence. I know it sucks). For me, that's being critical and quick to judge. And then something about Christmas morning finally arriving lets all the pressure out of the room, and I can just enjoy it.

The sanity issue brings me to my current conversational obsession: warning labels. I think everyone should have them. Then you can find out what their insanities are right up front and then deal with them. Hello, I was overindulged as a child and therefore need attention. or, Hello, I am insecure and very competitive with members of my own sex. Hello, inside I am thinking only about how fat I feel today.

Movies also need to carry warning labels. Last night I watched The Family Stone on HBO, which I thought was some sort of cute Christmas romance with some high-quality Sarah Jessica Parker-hating. Well, let me warn you about this now: THE FAMILY STONE HAS A MOTHER WHO DIES OF AN ILLNESS. Yep. It's the downerest of the downers movie. For the holidays. As if I was already riding a wave of sanity, for God's sake. So I spent a couple hours crying on Christmas Eve, missing my mom. Next up: Terms of Endearment. Maybe I'll top that off with You've Got Mail (another secret mother-death movie) and a touch of Bambi.

Alright, I've waited long enough to have room for another brownie. I hope everyone had as good a day as we did.

Saturday, December 23, 2006

Chapter I: A man named Brian Stallcop

Since I'm unexpectedly couchbound for the night, I'll interrupt my regularly scheduled pap to begin My History with The Pilot.

I started here on March 1, 1999, but the story starts 5 years before that. I was a sophomore, systematically breaking through Northwestern's protective measures before expulsion. First there was the warning shot, probation for 1 semester; and then 1 year; and then permanent probation, which is where I believe I stand today.

I was spending way too much time at The Daily, where I was the design editor. I had really never been trained; I had chosen graphics the year before because the line was shorter than the reporting line (see previous post re: impatience) during New Student Week. God, it was romantic to be in a newsroom for the first time. AND it qualified as my work study job!

At any rate, I knew The Pilot's reputation, so when I came home to this msg I about flipped: The News Editor of The Virginian-Pilot had called for me. I must have gotten the internship!

Yeah, I hadn't. I called him back, this Brian Stallcop, and he told me that I was dead center in the stack of applicants but to keep trying and to keep in touch. After hurting my ego, it seemed really decent.

Well, I did keep in touch. Three and a half years later, Brian gave me my first job, as a copy editor and page designer at The Sun of Bremerton. One of the other copy editor/page designers had called it "Bummertown" in my interview. She was right. My car had been involved in an accident on the way out there and was held hostage by a mechanic in Wyoming for most of my 10 months there. I spent most of my time embodying everything I'd learned about depression in college: sitting in my underwear on the floor of my furnitureless appartment, eating chili out of a can with just the blue light of Homicide: Life on the Street reruns on my face at all hours of the night.

That year, we learned that my mom had cancer. Ovarian and colon. I know this is going to sound crazy, but I had no idea how serious it was. I don't know how much any of us knew. I went home to visit a few times, and interviewed for a residency in Chicago, hoping to land closer to home. My mom seemed to get better, so I cast my net a bit wider. Brian, who was by then The Sun's editor, knew about an opening at The Pilot. He got me on the phone with Denis, who asked why I hadn't applied yet. I honestly didn't think I'd get it.

The day before I was to fly out to Norfolk, I found out my mom's cancer had metastisized. I asked Denis and Brian if I should cancel my interview. I didn't want to talk to anyone. I just wanted to go home. A kind, kind person at Northwest Airlines helped me through a difficult call, I'll always remember. I was just crying and crying, speaking indiscernibly and asking for a ticket home for the next day. He told me it would be some exorbitant amount, and said it would be a lot less if I waited a week or so. I kept telling him I had to get home right away. He just said to me, in the most caring voice I've ever heard from a stranger, "Who's sick?" I never took that trip. Denis and Brian convinced me to come interview. And while I was here, I decided to go home and take care of her. I told Denis on my last day here. He told me he respected my decision, and that he would keep in touch and that he wanted me to work here.

I went back to Bremerton, gave notice, and headed home. That was August, 1998.

Coming next on A Very Special Face the Music: Kicking around on a piece of ground in my hometown.

I'm impatient

It's just an affliction I've always had. I like to get things done now. I try to fight it, but I haven't been successful.

How this relates to today is that I have pushed myself a bit too far. I went to Target for a motorized scum brush (I know, I cannot believe it, either) today and I got dizzy again, worse than I've been in days. Luckily I had my cart on which to lean. Anyway, there go those plans to clean tonight.

Gone walkabout

OK, it's alternately muggy and sunny out and I'm between walks. I feel great today. I went in to the newsroom yesterday and gave notice that I'm coming back. It's odd how much better I'm feeling than even 3 days ago. I walked down to the post office, and to the Wall and back, and I just feel a little tired. I have so much energy. I started out with a little Queen (it's hard to tell if I'm dynamite with a laser beam or if I make the rocking world go 'round, but for sure, I'll keep on fighting 'til the end) and then somehow ended up with a little Whitney Houston. Ah, the vagaries of my iPod.

I know I'm coming back quickly. I hope it's not too quickly. Already I feel like a conceit on a television show -- I can't believe whatever extreme drama from last week's show got resolved so easily and now we're onto this week's drama already in just one line of dialogue! But I can't change how I feel. And, in this case, I wouldn't want to.

Friday, December 22, 2006

Still stuck in a cold

Why is it that no matter how much Kleenex we buy, I always end up just carting one lone box around with me from room to room?

OK, I'm off to go see Addison Montgomery, if you know what I mean.

Thursday, December 21, 2006

Is this what cautious optimism feels like?

I feel like I'm among the living today for the first time in a very long time. I walked around outside, and I drew in the chilled air. It felt so good. Do you ever get that feeling when you drink water that you can actually feel it nourishing each of your cells? That's how I felt with every breath.

It's good to be among the living again. Sure, now I'm on the couch, watching an inexplicably new rerun of The Office, but I had so much energy today. I'm very hopeful that I'm near the end of the tunnel.

This is spinal tap?

So I just had my lumbar puncture, and I have to say it was not bad. Be not afraid! I won't know the results until next Friday, because their office is closed for the holiday for most of next week.

The whole thing took less than a half-hour. I sort of freaked myself out at first because I saw him fiddling with this device. You can't tell from this picture, but it was about a foot and a half long. But then I remembered that he used that last time to check my reflexes and was not going to jam it into my back. I told the doc that if they offered muscle relaxants, these things would be a lot more popular. He said they were just about as popular as they need to be. We laughed, because what else are you going to do when he's got the big needle? Anyway, I laid on my side, with my back to him, wearing one of those gown things. I took off my pants, but got to keep everything else on, which was a nice surprise. He had me curl up in tight fetal, and pressed around to try to find where the spaces between my vertebrae were. Then he cleaned off my back, and then there was a sting when he put in the lidocaine. But that went away pretty quickly, and then he said the needle was coming. I was like, just like that??? He said, yeah, the lidocaine starts working in about 2 seconds. And he was right, because I just felt a little pressure as he was putting the needle in and throughout the procedure. Then he left the needle in for a while (maybe two actual minutes?) to collect the spinal fluid, which looks just like water. I think I expected something murky, like marrow from a chicken bone or something. Anyway, they took 4 vials, and then the needle was out. He assured me my spinal fluid won't leak out the hole.

My back is a little sore now, and he said I could develop a headache anytime in the next 4 days that could last up to 4 days. But so far I'm feeling pretty good. Actually, I'm feeling pretty good anyway today. I had a nice conversation with Luis last night about being positive. I still have a hard time discerning between positivity and denial, but right now I'm choosing positivity.

Wednesday, December 20, 2006

Lyrics of the day and other trifles

So come on now, come on now, child
You're here just a little while
And you might as well smile, you might as well smile
'Cause tomorrow you just don't know.
It will pass. It will pass in time.

OK, I'm starting to feel a bit like Tom Hanks in Cast Away if, instead of Tom Hanks, the part was played by Crystal Gayle (can you believe she is still touring??). Before I got sick, I'd been trying to get in to get a haircut (from someone who is VERY BUSY, apparently) for a couple weeks. Well, that was about a month ago. And now the hair is about 2 inches past ridiculous. I suspect that when I go back to work, I'll shave my head and spend most of my time on the floor beneath my desk, clicking a flashlight. Clickonclickoff. Clickonclickoff. Clickonclickoff.

Sunny, D

I spent the afternoon out in the sun because I read that sunlight and Vitamin D will help battle MS. I sat out on my balcony in pajamas, wrapped up in my favorite comforter from college. A lovely day.

Julie mentioned today that it might be chronic fatigue syndrome. Dammit. I don't even think I believe in chronic fatigue syndrome. Anyway, though, when I looked up the symptoms, it looked pretty similar. I'll mention it to my neurologist tomorrow and my gp.

The cold season

I have a bad cold today. Maybe this is what was keeping me down yesterday. I have a sore throat and I'm tired and my body has taken to producing extremely rude things. I'm going to have to call in sick twice today. Though I have to admit that it's kind of nice to have something so quotidian, something I can put my finger on.

I have been craving red meat so much lately. Like I feel like I could just eat an entire cow. I mean, it'd take me a day or so, but I could do it. I was afraid that watching the Koko documentary was going to make me into a vegetarian, but so far that hasn't happened. Fingers crossed.

Coming soon to Face the Music: a history of Judy and The Pilot, an occasional series. It starts with me as a sophomore in college. Ah, the Mama Cass years. Watch for it!

Tuesday, December 19, 2006

Baby steps

So I'm pretty much back to laying down all the time today. But I did get television back in reasonable spans, I've noticed. Right now I'm watching "Koko: A Talking Gorilla." Koko just stole a nut and is on time out. Sad, really. Parenting is really hard to watch.

My neurologist just called, and said all my bloodwork is fine. He said, again, that my MRI is abnormal, but "not that impressive, no offense." I'm scheduled for a lumbar puncture on Thursday at 11. He said if he finds proteins in my spinal fluid, we might head in an MS direction, because it might be super-early. But I just wonder why I'd feel so bad if it were so early. At any rate, I'm not looking forward to the actual procedure, but I am really glad to be having it, because I want all the tests that can be done to be done. What else is there?

PS: Here's a tip for anyone who is ever in the position of having to get in to see a super-specialist doctor-person. Always try to get on the cancellation list. At first, they set me up for an appointment in January. I asked to be on the list, and they called me back with a cancellation on Thursday. Sweet!

Lay, miserable

Kind of a setback day so far. I went to bed early last night because I was really tired from going to get the Christmas tree. Then I woke up to pee and was awake for maybe 30 minutes and then fell into another deep sleep that I couldn't escape for many hours. Do you ever sleep so hard that you feel like you actually integrate with the bed? As if the bed sucked just your shape into it, perfectly? That's how it felt. I was plagued with the kinds of weird dreams you have on NyQuil, which Dustin and I call NyteMare. Most of them involved little kids in danger of being blown up. Horrible, horrible.

What is keeping me down? I'm having a really hard time getting my doc on the phone, and I didn't get to talk to my favorite nurse back there, Vonda. I got someone else instead, and I don't like her. She has a very "what is your problem?" attitude, unlike everyone else's, which is "hi sweetie, how ya doing today?" She's new, though. I will outlast her.

Monday, December 18, 2006

OK, so

Lyme disease is out. Vonda from my gp's office called to say they'd tested for that and that I was fine. The encephalitis, which I frankly think is a long shot given the symptoms, would need a lumbar puncture to determine. So I'm waiting to see if my neurologist wants one. I don't know if all the rest of my bloodwork is back yet. Dr. Lanoue said it would be a week, and that was last Wednesday. So I'll probably call on Tuesday.

Sam called today to see how I was doing. It was really nice to talk to him. I was trying to let him know that everything is hilarious to me right now, in a way that I think is actually a manifestation of my illness. I mean, you know, it's probably neurological, right? So anyway, this is for Sam. This is from a movie spoiler web site (I love spoilers, I have to say. I don't have the stomach for suspense) and it just made me laugh and laugh. They need a spoiler. For the Nativity Story. Hahahahaha.

Sunday, December 17, 2006

Not just desserts

Today I was able to go to Bernadette's dessert party, which was really great. My favorite, I'd say, was the chocolate mousse, because of the chocolate cookies sticking up out of it. Super. Also, the pumpkin cheesecake was quite good (Lauren's flavorite) and some kind of a berry nut wrap? Anyway, everything was mega good. When we got there, I felt pretty tired, but I sat and took it easy for about an hour, sitting and talking with people. After that my head started to spin, so I went into another room and laid down on the couch with a teddy bear and a cute Paddington. It was random that I remembered the little Brit bear. Many people came to visit me in the room and chatted, and we stayed for a few hours. I was happy to see everyone.

Now I'm home and resting in bed. My head hurts; I think I overexerted myself today. We still don't have a tree, but we did go and buy some lights and ornaments, so Jeffrey can go and get a tree by himself tomorrow and I can decorate it when he gets home. He's not that enthusiastic about it, but he's going to love it, I know.

Tomorrow I'm going to call my doc with my new symptoms as well as a couple possible diagnoses that I picked up at the party: encephalitis and lyme disease. I'm sure he'll love that!

Saturday, December 16, 2006

And now that I've gotten me started,

let me just say that I hate that Northwest Airlines changed its logo. It was my favorite logo, and I talked about it in the design classes I taught. Here's the oldie, and still quite a goodie:

It works on so many levels. There's the N that's leaning forward, about to take off. And then there's the triangle that combines with the N to form a gestalt W. And finally, the triangle combines with the circle to create a compass, pointing (you guessed it) northwest. So smart. I love it. So I'll never know why they changed it to this:

OK, first of all, when I think of nwa, I think of something else. And I'm almost positive that these guys (wait, Doris Kearns Goodwin is on the board of Northwest? Who knew?) aren't straight out of Compton. Secondly, the logo completely loses all of the typographical brilliance of the first one. The compass remains, but the triangle isn't incorporated with the type at all.

OK, that's all for now. My headache and left elbow pain is still here, but I got a nice visit from Luis earlier that got me out of bed for a while. We also tried to buy a tree, but they were all sort of Dickensian, so we passed. The elbow thing is weird because it shows up out of nowhere, so I never know when my entire left arm will just give out. It makes things pretty unpredictable, but not in that butterflies-in-the-stomach way.


An icepick headache again today. Left temple. Blech. I REALLY hope we'll be able to go to Bernadette's dessert party tomorrow.

Originally, Jeffrey and I took this day off to go to what Lori calls "All-you-can-meat" in Richmond, where they would rue the day they met the likes of me. I mean, I guess that would have been today. But we'll go as soon as I get better. Please, illness, don't be something that makes me have to give up stuffing my gullet with meat, hand-carved off a sword at my table, on keep-it-coming status.

Friday, December 15, 2006


I gotto admit that today has been kind of rough on me. I've done the most that I have done in weeks: Walked over to the post office and back (mostly with my eyes closed, a process I call inverted blinking), did a load of dishes and a few other small things. But they've really taken a toll on me. It's hard for me to remember that I'm not back to normal yet. I crashed hard this evening, which hasn't happened in about a week. I think it's because I pushed myself, but I honestly do not know what else to do. I think that I have to push myself a little further to get a little more energy back. But it hasn't worked for me so far. I honestly don't know what will.

OMG, I just got this -- the amazon logo's little arrow means a to z. I just thought it was a little grin. Jeez. Just took me 11 years to figure that out.

New symptom

So today I have extreme joint pain in my left elbow. I went to flush the toilet with my left hand and literally yelped in pain. I couldn't help but laugh at the metaphor, though; I have always had trouble letting things go.

I looked up my new symptom set on the internets, and found fibromyalgia, but I don't have any of the other symptoms for that. So for right now I'm just going to live under the assumption that it's just atrophy. So I'm going for a walk. It's gorgeous outside. You'll recognize me as the woman walking slowly, eyes closed, singing loudly, and probably flailing wildly to work the muscles.

Thursday, December 14, 2006

I'm feeling that feeling again. I'm playing a game I can't win.

OK, $20 to anyone who can name that song lyric without googling it.

I'm guessing it'll be the Eva Brian formerly known as Evil Brian.

I had my VER test today. They hooked up electrodes to my head and face (they exfoliated first; that patch of skin is SO NICE now!) and then flashed a checkerboard pattern at me to see how the impulses go through my brain. I got to wear an eyepatch. My neurologist happened to be right there, so he interpreted the results and told me that they were normal. Also, he said the MRI showed some abnormalities, but he was unlikely to call it MS. He looked sort of flummoxed when he told me he didn't know what it is.

So now we're waiting on all those blood tests, which can take up to a week.

So I'm back to not knowing, which is sort of hard for me. I think I had come to terms with the MS diagnosis. I know that it probably not being MS is good news, but only if what it is is better. I don't mean to be pessimistic, truly, but I just feel like I'm never going to know what it is.

I did go into the office today for a couple hours to test my tolerance. It wasn't great. I was pretty dizzy by the end, after going through my 288 e-mails, the vast majority of which no longer pertained to me or any of their recipients. It was really nice to see people, though. I laid low in the redesign grotto, the site of my near-collapse a couple weeks ago.

Wednesday, December 13, 2006

Doctor No. 4

So I saw the neurologist today, Dr. Lanoue. He was the fourth doctor to say that it's likely MS. So I'm back. I couldn't really read him very well, as I can read my other docs. He said that we'll just do a bunch of tests to try to eliminate everything else. I sort of feel like it's the JonBenet Ramsey investigation, just a slow process of eliminating every other suspect. Of course, I think MS died in that one.

So I went over to my gp and gave what seemed like a LOT of blood for a ton of bloodwork. Tomorrow I have a visual evoked response test. Then my neurologist will look at the results of my bloodwork, my MRI and the VER and see if there's any more information. He did also mention the spinal tap again. Oy.

Oh, and just a little tip: Your neurologist will ask you to take off your shoes and socks. I didn't know that, or else I would have taken some cosmetic measures. Or 1. One cosmetic measure. Anyway, if you have to go, and you feel a little funny about your feet, just be aware that they will probably ask to see them. This maybe tests your neurological response to embarrassment.

After a couple days of feeling pretty good, I'm back to dizzy, lightheaded and headachy today. Dag.

Oh yeah, and of course, this: SCORPIO (Oct. 24-Nov. 21). Isn't it strange how the people who are the most able to handle tough obstacles don't usually encounter them? And the people with the most money are given all the free stuff. Today you're trying to rectify life's inequities.

I guess I need to handle some obstacles? Or something? I'll let you know if I come across any. Right now I'm just going to be in bed, so they'll have to find me there.

Tuesday, December 12, 2006


So they were able to get me in tomorrow at 8!!! Yay!!!


My gp says the MRI is not diagnostic, meaning it could be MS, it could be something entirely different, and he can't tell. He said the vessels looked good, meaning I didn't have any bleeding or a stroke or anything. Well, there goes that excuse out the window. Dag.

He said there were some subtle changes in my brain (which I guess means differences from other brains? Since this is the first time he's seen my brain?) and I'd need to see a neurologist to do some more tests to see if we're even going in the right direction. He said they were trying to get me in this week, and that it could involve a spinal tap. Ai Chewbacca. All I can say is that I hope this ends up with me being smarter or getting some kind of X power.

OK, I just talked to the neurologists and they can get me in the soonest on December 27. Literally, I am crying.

Holiday Mathis' buzz-harshing continues!

SCORPIO (Oct. 24-Nov. 21). You're so sensitive, but you'd benefit from toughening up your approach today. Let nothing discourage you. Be like people who do cold calling for a living -- they are rejected 95 percent of the time and continue on.

WHAT has this woman got against me? I'm her biggest fan!

Monday, December 11, 2006

No news, well, you know the rest.

I had my MRI today. They looked at the nerves and also the blood vessels. It was painless; I actually fell asleep during the procedure. It was just so dang comfy. I can pretty much fall asleep anywhere. One time I woke up from a very deep sleep on a plane, and EVERYONE WAS GONE. I was like, damn, are we here already? The flight attendant said no, we never left. We had to deplane because there were some problems with a wing. Seriously.

Anywho, my gp hasn't called me today, and I didn't get done with it until a little before 5, so I'm going to find out tomorrow.

So much for an ominous horoscope.

Lyrics of the day

Hey you! Don't tell me there's no hope at all!
United we stand. Divided we fall.

Holiday Mathis is harshing my buzz

Here's my horoscope for today:

SCORPIO (Oct. 24-Nov. 21). Your stars put a big challenge on the agenda. This gives your valiance a chance to emerge. So when you see the obstacle, as you will almost as soon as you get to work, don't back down.

I mean, seriously. Jeffrey points out that I'm not going to work today. He has a point. And there are other points, certainly.

In the small hours before THE DAY OF THE MRI, this reminds me of my discussion with Denis during my interview for news editor. He talked about the big challenges of the job. I told him, there's nothing you can do with challenges but meet them. What else is there, I said. Well, I hope that hubris carries me through this.

Sunday, December 10, 2006

Give me the keys

Oh I don't mean driving. I mean I'm back at the piano this morning, which makes me very, very happy. I can't read music for long stretches, so I'll play one or two pieces by reading, and then I'll play the ones that I have memorized. I hope my neighbors love "The Rose." I'm trying to memorize them with my eyes closed, too, because that feels the best. I'm also doing some Hanon finger exercises to get me back in the swing. I can do those with my eyes closed, too.

This morning has been pretty good; much better than yesterday. Last night I felt like someone was driving an icepick through my temple, but in a way that made me optimistic because then I thought, hey, maybe I'm having bleeding in the brain! Yesterday's highlight was David bringing me over mac and cheese. It is really, really good.

Tomorrow's the big day. My MRI is at 3:45, and I'm not sure when it can be read. My gp said he would probably be able to talk to me about it on Monday, but I wonder if that will really be the case. He also said he will try to talk to the neurologists and try to get me in before February 7. That'd be great.

I leave you with one question: Wrong, or very wrong?

Saturday, December 09, 2006

Baby, it's fracking cold outside

Not so great this morning; woke up with a bad cold and headache combination platter. But the good news is David is bringing by some homemade macaroni and cheese this afternoon!!! And he makes good mac and cheese. I'm really into sort of middle-American comfort foods right now. Laura brought me some ham and potato soup (made with 5 tablespoons of butter!) and it was very good and homey.

I may have jumped the gun on my television-watching abilities. Last night we tried to watch Battlestar Galactica on the big tv, and I had to turn away for most of it. It's OK, though. I liked last week's much better. A co-worker called it "Like Grey's Anatomy but with much more violence." Yup.

It is the season, after all

For funny pictures of children being frightened by the big man.

Friday, December 08, 2006

... and I think to myself ...

Today has been wonderful.


My doctor's appointment was fine. We discussed what Dr. Kerner said, and he said that we still don't know if it's MS, so we'll just wait on the MRI on Monday. He also reiterated the possibility that it's some kind of virus or some kind of bleeding in the brain. I asked if there would be anything we could do to treat my symptoms now, and he said that not knowing what's causing them would really make any attempts ineffective and possibly dangerous. He compared it to shooting into a forest and hoping to hit something. So I'm happy to just hang out and wait. He seemed pretty positive during the entire visit except for one point, to which I'm not sure how we got. I had mentioned that I was feeling better today (and the women who work there, who have seen me 4 times in a week, mentioned it, too!) and that yesterday I only crashed once instead of twice. And then he said that sometimes these things seem to get better and plateau, but if there's a deterioration after that, he'd probably send me back to the hospital and they would treat it acutely there. So OK. Also, I don't think the Gatorade and Gatorade-like products have been helping, because my blood pressure dropped another 20 points when I sat up from laying down. He looked up orthostatic hypotension on the Web, and it looked like it wasn't connected to MS. So that might mean something. I'll talk to him again after my MRI.

Diana was waiting for me after the appointment, and she brought me many goodies of the food/entertainment/comfort variety. That made me feel really, really good. Before I went to my appointment, Julie came over and we chatted and I played the piano, which I really have not been able to play since I became sick, because I can't sit up and concentrate for that long, and because my eyes wig out when I look at the music. It was so great to see her again. So I came home to her, and then Jim came over and they got lunch and we all ate together. It was so much fun. Everything is hilarious to me right now, and they were joking about how I could milk this at work -- "Um, actually I think the page on the left is better -- and I have brain-stem bleeding." Eventually it just became BSB -- "Uh yah, I really need this vacation time (BSB)." We laughed so loud. It felt good.

I was really surprised at how long I lasted today. Jim and I played the piano, and then Julie sang along (there's video, and I've heard of this e-service called u-toobs or something?). Jim plays really fast. It's funny; even though I can play the songs he played, I was just amazed when I saw his fingers move without him looking at the keys. It's really kind of unnerving. I'm not entirely sure why. Anyway, I started to get tired, and so I sacked out on the loveseat in the back and Julie knitted while Jim played. It felt like maybe we were in Little Women or something?

After they left, I pretty much went back to Bed Central and slept for a couple hours. But now I think of my day and I laugh, and I laugh, and I laugh.

Thursday, December 07, 2006

A lot

Today's been quite a roller coaster. I'll try to give you the double-edit, followed up by the too-long story.

>> At no time did my ophthalmologist or any of her staff blow puffs of air into my naked, vulnerable eyes, a practice that is a betrayal on the level of astronaut ice cream, which I always think will be fantastic but never, never, never is.
>> I may be able to watch television again. I was able to tolerate it for about an hour tonight. I can finally find out what happened on The Closer! And, there's this commercial, which I LOVE. They show it during BSG.
>> I talked to many people who were very supportive, reminding me of the love in my life and the different forms it takes.

So I guess that brings us to the not-so-good. Dr. Kerner, my ophthalmologist, didn't find anything wrong with my eyes, but there is some damage to the optic nerve in my right eye that shows that there was probably some optic neuritis in the past. She said she couldn't diagnose me for sure, but she repeated something the other doctors have talked about: multiple sclerosis. She also said it's still possible that what I have is some kind of virus, and that many times, young women who have these sorts of mysterious symptoms are initially diagnosed with MS because so many women get it. The real clincher will be the MRI, which I have scheduled for Monday. Apparently, they need to look for white plaques in my brain, and they would show up on the MRI. So, as far as I can understand (she threw a lot at me today), the MRI will let us know for sure whether I have MS. If I don't, I'll be back in the great unknown.

She also wants me to see a neurologist. Her office called down to the neurology specialists at the hospital, and they gave me an appointment for February 7. That is in 2007. AND they asked me if I wanted morning or afternoon. Apparently they're WIDE FUCKING OPEN on February 7. I'm going to call back and see if I can get on some list for a cancellation or something. I don't want to go somewhere else, because apparently they are the MS specialists. And, Dr. Kerner said that with something like this, 6-8 weeks is not a huge difference in the course of treatment. Still. February. I was able to sweet talk my way into an earlier appointment with Dr. Kerner. Let's see if it'll work with these chaps.

So I was pretty much a mess when I got home. It really surprised me. I have been pretty pragmatic about this whole thing so far. About the MS possibility, I mean. I've done some reading, and it's been pretty matter-of-fact. But then I started talking to my friends, and I really lost it. Brianne came over and sat with me, which was really, really great. She told me that once I know what it is, I will go into Judy Attack mode, which allows me to find problems, break them down, and solve them. And I thought about it, and she's right. I have been short all my life, and I find ways around it. Sure, some of these methods pose danger, but I very often get what I want -- from off of the top shelf, or in life. I've been lucky that way.

So tomorrow, it's back to my GP. More questions. I'm hopeful there will be more answers.

And Julie is in town, and she's coming over to chill. She and I talked today about how sometimes people don't know what to say when I talk to them about this stuff. I know. I told her that I know it's really hard for everyone, not just for me. They're worried, and confused, and they want to help, but they're not sure how. I'm sure I don't make it any easier, because in the past I've been really critical of people's words. What can I say? I've always been an editor. A friend of mine wrote to me and apologized for not stopping by or calling. She said she didn't want to do the wrong thing and make it worse. I told her that if it comes from a place of caring, it won't be the wrong thing. And I really mean that, even though I can't believe I actually used that "place of" construction. Blech. It makes me want to vomit.

When I was taking care of my mom in the last 6 months of her life, some people dropped out of my life. Two of my best friends, who years later asked for my forgiveness, just sort of disappeared. It was heartbreaking and really eye-opening. They chose absence over awkwardness. I did forgive them, though. It's hard for everyone. There's no guide. I was losing my mom for the first time, and I made mistakes. They were watching me suffer for the first time, and they made mistakes. And now I'm coming to terms with my own health for the first time, and I will make mistakes. Everyone will. And instead of concentrating on perceived deficits, I'm concentrating on the good intention.

Lauren told me the best thing tonight: She said if you want to cry, you should cry. I'll hold your hand. If you want to laugh, I'll laugh with you. If you want to kick my ass in chess, you can kick my ass in chess. Whatever.

And that just about did make me want to cry. 8)

A great morning

I'm feeling good and I chatted with Julie this morning. Life is so good. More on that later.

OK, off to see my ophthalmologist!

Thanks for reading


I just wanted to make clear that I don't intend for this blog to be a replacement of talking or having personal contact. I thrive on that. But I also know that people get busy with their own things. I know people are thinking of me, and I am really grateful for that. I just wanted to give people a chance, if they're interested, to catch up with the medical stuff in a sort of non-invasive way. Also, I find myself with a lot of time on my hands at a time when many of my work friends are busier because of all this time I suddenly have.

Anyway, that's all.

I mean, but really, is that ever all? 8)

Sines, sines, everywhere a sine

So I think I can represent my day as a sine wave with a pretty large amplitude. It starts out in the morning, when I'm feeling pretty good because I'm all rested up. Like today, I was able to walk around pretty normally in the morning, go and get breakfast (All-Bran with chocolate soy milk; it is fiberlicious!), and sit up in a chair for about an hour and a half. That's a lot for me right now. Then I noticed I was propping myself up against the back and side of the chair, so I got back into bed. I was still able to write, answer the phone, and watch a dvd on my laptop (right now I'm watching the second season Office DVDs. Pure gold) for a couple more hours.

Then there is always a crash. I can't talk, I can't get up, I can't pick anything up, I can't open my eyes, and I have to sleep right then. This usually lasts for about an hour or 2.

Then, depending on how long I rested, I have another little spurt of energy. Today, I was able to sit at the piano and play one page of "Gymnopedies" (a shout-out to Denis, who loves Erik Satie, and my god, who wouldn't), heat up my dinner, and then get back to bed, aka my home base. A little more of the DVD, a little more talking on the phone with or e-mailing family and friends, a little more looking at weird things on the internets. A lot of Gatorade and Gatorade-like product-swilling. And then I feel another crash coming. Today, Laura was supposed to come over and hang out, but I knew I was about to crash, so I had to ask her to not come over. That made me very sad.

So you see where I'm going with this. It takes a little longer than 24 hours for me to have 3 full cycles, which means my sleeptime has been shifting ever later. Jeffrey wants me to sleep, but I don't want to waste the time that I'm feeling good.

Wednesday, December 06, 2006

Peace on earth? Begins with me?

I've been thinking that maybe this whole thing will make me more peaceful in life. I've been very much getting into scented candles lately. I have never ever been into them, so I have a lot laying around the house from when I've gotten them as gifts or won them in something. I took this photo last night. Cliched? Yes. But it makes me happy so so what?

Tuesday, December 05, 2006

Judy's illness: The Miniseries

So even though this blog started as a place to talk about learning how to play the piano, I'm going to start blogging about my medical stuff. I figure it's logical because it's been keeping me from playing the piano, and hey, at least the blog title is still accurate.

So here's the story up until now:

Last Monday, I started feeling very, very lightheaded. I bought a vcr/dvd combo (don't ask; craigslist, you are the devil!), and as I was carrying it to my car, I suddenly didn't trust my arms to not drop it. So I rushed to the car and rested it on the trunk of the car and worried about getting home. I thought it had been the new video we'd tried earlier in the day, Paula Abdul's Cardio Dance Jam, so I just crawled on the couch and sacked out for the night at like, 8.

So Tuesday, it got worse. The lightheadedness upgraded to a full-blown dizziness* and I felt like I was falling all the time, even while laying down. I called in sick and spent 23 of the 24 hours of the day in bed.

On Wednesday, it was still bad. I talked to Tim, who had experienced vertigo after going on some kind of medication, and I wondered if this could be like that. I was in bed all day, and feeling OK because of it, and I decided to try to come in for a meeting for changes to the paper at 5. When I stumbled into the shower, I knew that was a mistake, but I kept at it. Lauren drove me to work after we talked about me not going. I was miserable the whole time. Paul and Denis and some guy named Mike were talking about some page behind me, and I couldn't turn around and look at it, because of the dizziness. I mostly just kept my eyes closed and sat as fully reclined as possible in the chair, using my ponytail to steady the back of my head. Jim thought I was delirious, with moments of extreme lucidity. Apparently I used the word "hopefulness" a lot. Then I used the wall to brace myself to get back to the Jeep and laid/slept for the rest of the evening.

Sometime in these few days I realized that the TV was making me feel much, much worse, even for 1-2 minutes at a time. Also, my little iBook makes my eyes crazy and my head feel like it's falling off. And I can't read the paper for long stretches at a time because it makes my head crazy. So I've been using my PC laptop from bed. Pretty much it's all I have right now. Thank goodness for living in 2006.

On Thursday, my doctor checked me out and hypothesized that I had some kind of inner-ear labyrinth problem. He checked out my eyes, too, and said that I had some difficulties following his finger as it wiggled around. He prescribed me some Meclizine and said if it's not a lot better by 10 Friday, to come back. He also said I have orthostatic hypotension, which I think I've had forever because I sometimes grey out when I stand up. I just hold onto something and just wait until it clears up, like static on an old-timey tv.

So I took the Meclizine and went to bed, and on Friday morning I felt pretty good. Mornings are better than evenings for me, because I just get so fatigued and dizzy. The Meclizine is supposed to make you drowsy, and I really, really wanted to go to work, so I didn't take it. For a while I thought this was the dumbest thing I'd ever done, but it turns out that it didn't even work for what I have, so I'm not feeling quite as dum. Anyway, I drove to the paper, but I knew in the car that I'd made a mistake. Why can't I ever admit that to myself? I drove the 6 minutes there, and then sat in the car for about 10 minutes, slowing down my spinning head and getting up the energy to go in. I was carrying my purse and my lunch box and an umbrella, and by the time I got to the redesign grotto, it was just too heavy for me. So I pushed through the door and just dumped my stuff. I don't know what I was thinking, because then I tried to walk to my desk. I COULDN'T CARRY MY THINGS, BUT I THOUGHT I COULD JUST GET TO MY DESK AND WORK. This truly is dumb, to be sure. Anyway, halfway there, Evil Brian saw me and stopped me and turned me back around. Brianne drove me home, first stopping at Harris Teeter and getting me groceries. I hadn't been out of the house, really, in 4-5 days, and the food at home was getting very desperate and collegelike. Jeffrey had been working a ton of OT, so he didn't have time to go out and shop, either.

In the Harris Teeter parking lot, waiting for Brianne to come back with my food, I just started to cry. I hate to have people have to take care of me. And it definitely brought up issues of when I took care of my mom as she died of cancer. I just cried and cried. It was awful.

is a blur, because I started taking those Meclizine pills again, and then sleeping, and then waking up and taking a pill, and then going back to sleep. Sunday, when it became clear the pills weren't working, I stopped taking them. I was able to get out of the house for about an hour and a half for a planned social gathering, but the last 45 minutes were very painful. I had to lay down and call Jeffrey to pick me up. All I had been doing was eating and sitting up, but it was too much.

So on Monday, I went back to the doc. He was upset to see the pills hadn't worked, and did some blood work and sent me over to the e.r. to get a ct scan and an ekg and some more bloodwork. After about 4 hours, (Jeffrey was in the waiting room through several episodes of Law and Order; 2 not guilty shows in a row!) everything came back negative. The ct ruled out bleeding in the upper lobes of my brain, but can't rule out bleeding in the stem. My liver and kidney and thyroid functions looked normal. I went back to my bed nest. I did leave it for a while because one of my favorite shows, "The Closer," (and let me just say that goddammit, they really do know drama) was coming back from hiatus. I went out to the living room and tried to sit and listen to it, but my eyes kept wandering over to the tv with very bad results. So I ended up turning the chair so it was faced all the way away from the tv and I listened to it. It was pretty dramatic that way -- someone got shot and I had no idea who!

took me back to the doctor, where he looked concerned again. He's usually pretty jolly, so I can't say as I like that. We set up the course for the rest of the week, which included going to see an ophthalmologist** for a neurological consult, and then back to him, and then getting an mri. This test can rule out bleeding in the brain stem, I'm told, as well as show lesions and other abnormalities in my brain. My doctors are pretty convinced that it has to do with my eyes, because they move around in a funny fashion, as well as the fact that I can't look at certain things without getting sick. I also close my eyes a lot while I'm talking and typing because it's much more comfortable.

The other thing he told me to do is drink a gallon of Gatorade a day and increase my salt intake to increase my blood pressure. I was like, can do, Doc! So Jeffrey and I went to Gene Walters and got a ton of different -ade options (Gatorade leaves a bad aftertaste in my mouth sometimes, and Powerade makes me feel like I'm getting away with something!) for me to try out. Also salty goods!

So that brings us to today. I've been up and sitting for an hour, so that's great! But I have a headache, which is new. That scares me.

I'll keep this up to date with my medical stuff and whatever I come up with.

* Since then, I've heard people call this "disequilibrium," which always makes me want to say the word, then spell it out in sets of 3, and then repeat the word again.
** This word I want to spell out, too.

Sunday, August 13, 2006


I'm trying out a new piece, and once again, I am moved by it. It's called Gymnopedie, by Erik Satie, and the dynamics at the top translate to slow and mournful. It is gorgeous. What really strikes me about doing this piece at this moment in my life is that I am able to read the music so much better than I expect to be able to. I'm not good by any stretch, but this is the first time I feel like I can go to the nation of music and speak the language a little bit. Last night, when I played through the piece for the first time, I was actually able to figure out the melody and the bass lines. It's such a gift, to be able to learn a new language. Honestly, now I think, well, I speak English, Vietnamese, and I read music.

Saturday, August 12, 2006

Orff my rocker

OK, so I've been playing these pieces from a book called the Orff Collection, some little piano pieces from Carl Orff. And yesterday, I came across a piece, No. 7, that was really simple and beautiful. It really made me grateful to be playing the piano. It was amazing. I know this sounds cheesy, but I felt really moved. It was so wonderful how he put the notes together, but the fact that I could reproduce it, and be a part of it, was just so touching. This book doesn't have many dynamic markings, so I was able to interpret parts of it myself to make the song mournful.

So I get it. I get the deal about music, and how people get so involved in it. Count me in.

Friday, August 11, 2006

Cat power

I think our cat, Maddy, really likes my playing now. At first, she would just paw at me, with her eyes wide as I plunked through "Jingle Bells" and "Good King Wenceslaus." But now she sits at the edge of the rug that I bought for the piano while I play, bathing herself. She makes me feel like I have a fan.

Monday, August 07, 2006


I was just flipping through this new book that my teacher gave me to practice while I'm on break. It's "The Orff Collection," by Carl Orff. And here's what I saw in the table of contents: Part I: Intermediate Level.

Intermediate Level!!!


Sunday, August 06, 2006

School's out for summer!

My teacher doesn't teach in August, so I'm off for a month. She gave me a bunch of stuff to practice, so I've been keeping busy. Last week, I ran into my neighbor, who also teaches piano, and he said my teacher said I was "a very good student." Y-hoo!

I've been practicing from 4 different books (over the summer, I've started an Orff book), and some of it goes pretty well. I'm up to Alouette and Kumbaya in the Alfred, which I quite like. I've done 4 different versions of Simple Gifts. So I was practicing tonight, and feeling pretty good about it until I got to the Piano Town pieces, complete with their dinosaur drawings and kids with trumpets. And then I started to suck, big time. A major degree of suckage. It really was amazing. But I figured out why: because they change around the fingering. One second I'm in G position, the next second my fingers are all overlapping each other. I get all jacked up.

Anyway, at least now I know why I suck. And knowing is half the battle.

Anyone out there have trouble with crazy fingering?

Friday, July 28, 2006

Power to the people

I've just finished the book, "Piano Lessons: Music, Love & True Adventures" by Noah Adams, who I guess used to host NPR's All Things Considered, or maybe still does. It was a quick and entertaining read for the most part. At 51, Adams decides he must buy an $11,000 Steinway, even though he hasn't had lessons for decades and does not know how to play. Directly after his piano arrives, he shells out $300 more for a piano lesson course on his old Mac (this is from 1996, so I'm guessing ... System 7.5 or so? 8, maybe?), along with what I can only imagine is an incredibly cheap little electric keyboard. The program teaches as he plunks along on the little keys, telling him if his rhythm is right or if he's off on all the notes. He goes through this program for a while, then pays for another learn-by-ear program, and then goes through a week of intensive piano camp, which ends in a performance for other campers. This all leads up to him playing Schumann's "Traumerie" for his wife as a Christmas present.

I'd read some criticisms of the book on when I went to order it (for one cent! Odd). Readers in the music community were insulted by the way he went about playing, intimating that he cheated in some way. They criticized his lack of discipline
and hints of elitism.

And, after having read the book, I have to agree to a certain extent. While he approaches learning the piano with a certain degree of self-deprecation, there's no true humility. Maybe it's because his job allows him to, instead of simply admiring the great players of our time, just go out and interview them. It sort of puts him on their level, if not through music, then through conversation. Maybe people are resentful of first reading that a person blows, seemingly unthinkingly, $11,000 on a piano, and later more on a handcrafted boat for his wife. I mean, should he feel bad for working hard and making money? No. But I just don't smell even a whiff of gratitude.

I don't know who this book is written for. Like I said, it was entertaining to me, but I also recently bought a piano and started playing. That's why my boyfriend recommended this book to me in the first place. So let's say there are those people each year who buy a piano, cold, in their adulthood. We can all read it and enjoy parts of it.

But then who else is there? Is it for the people who can afford all of that? A month every year in Maine; Washington, D.C., digs that allow for a piano?

One thing I've always hated about chess is that people think it's only for the elite -- be it the intellectually elite, the good players, or maybe the people who grew up with a "library" in their house. That's why I like to play on a $2 K-mart plastic set. Also, I have a handmade Chinese chess board with glow-in-the-dark plastic pieces. It's a game for the masses.

And music is for the masses. But America is what it is, and some have more, and some have a lot more. Maybe a younger version of myself would read THIS blog and just want to vomit. Why do I need a little keyboard for roadtrips? Who the hell do I think I am?

Does anyone else face these questions? Let me know if you come up with any answers.

On the road again

So we're doing some traveling this summer, but I don't want to lag on the practicing. So I've been looking into getting a little keyboard that I can take in the car for 4-7 day roadtrips and such.

And you're thinking, you only just started playing piano because a friend of yours sold you one for cheap. Yes, well, welcome to a little neighborhood called obsession. It's sometimes fleeting, often expensive, and always intense.

So anyway. There are a lot of choices out there. This weekend I visited my friend Julie, who plays the violin, and we went to a couple music stores to scout them out. She wants to get an even smaller keyboard so she can just plunk out chords and understand some more complex theory than she's getting right now.

The thing is I just want a little portable piano. I don't want it to do scat, or sound like a French horn, or heat up my coffee, which I don't even drink. But the sales staff at the store was trying to sell us both on some very complicated machines. It made me love my little upright piano all the more. I felt strangely Luddite.

One thing I'm looking for is weighted keys. Does anyone have any idea how I can find a cheap keyboard with weighted keys? I'm guessing no. But I'm on the lookout.

Thursday, July 27, 2006

What my mind can conceive, my body can achieve

It seemed so hopeful when I read that saying in a series of children's books long ago. I'm just having a little trouble actually getting it to work.

Right now, I'm having a problem playing the notes in the melody legato, while the accompaniment is staccato, or just even unmarked notes. At the end of my lesson this week, my teacher said I could practice a little passage while she waited for her next student. I played the passage (3 notes! 3 notes!) maybe 3 times, and then she just said, "well, maybe you just better stop." I laughed and said, "Just can't take anymore today, huh?"

She said I'm falling on the keys, instead of playing deliberately. So this week, that's what I'm working on: Deliberation. If she only knew how deliberate I am.

Does anyone out there know how much I should be practicing each day? I asked someone at work, who said it should be 2 hours, at least 5 times a week. That's going to be hard, since I work at least 50 hours a week. What I really want to hear is 30-45 minutes.

Tuesday, July 18, 2006

How old will I be if I don't take piano lessons?

Oh, who the hell cares how I got here? Here's what matters: I'm 30 years old and I'm just now learning how to play the piano. It's something I've always wanted to do, but we couldn't afford it when I was a kid. And then laziness and complacency stopped me from doing it as a young adult. But when a friend of mine moved away a couple months ago and offered to sell me her piano, I thought, well, it's about time.

I've taken about a month's worth of lessons, and the kid who follows me at my teacher's house is oh, maybe, 6. As someone who's always considered herself a middlin' to high achiever, this brings with it a sweet pain.

I asked my piano teacher how long it would take me to get good at the piano. She said, maybe 3 years until I feel proficient. At first, I thought, man, I'll be 33 years old and just gaining proficiency. Damn.

But then I thought, I'm going to be 33 anyway. At least I'm doing something with my time. So I posted a sign above my piano: HOW OLD WOULD YOU BE IF YOU DIDN'T TAKE PIANO LESSONS?

In case you want to play along at home, I'm using these 3 books right now:

Faber and Faber's Adult Piano Adventures

Alfred's Basic Adult Piano Course Lesson Book, Level One

Piano Town

Oh good, the Piano Town book image came in the largest, so you can see the kids right on the front. That's the funniest, or most humiliating one, whatever your perspective. I enjoy such hits as, "Owls and Bats." "The Backpack." "Waiting for the Bus." "My New Class." And don't forget such classics as "Glitter Glue."

I kid, because I know I have an amazing opportunity. I have the time and the money and the space to bring piano into my life. I'm really glad. And I'll let you know how I do.