So for those of you with Chiari looking for a happy ending, I have some bad news.

My symptoms (with the exception of the truly horrific headaches) have come back.  With a VENGANCE.  I'm in more pain than ever, in more of my body than ever.  I have difficulty walking more than a few steps, when I can walk at all.  It takes as long as ever to wake up in the mornings- but without the Provigil, I'm barely able to get out of bed for 4-5 hours.  I use a walker or a motorized chair pretty much full time.  I'll use a cane to get to the bathroom next to my bedroom; the walker is too hard to manage around the doors if I'm too tired/hurty.  I sit to shower, my husband helps me wash my hair.  He has to help with my shoes most of the time too.  I only wear slip-ons or zip-ups now; anything with laces is kind of a cruel joke.  I've been on medical leave for 2 months.  In the 6 weeks before that (right after I went back to work after summer break) I missed 6 days of work before starting my leave.  Four of those were days I went home early- one was when I FELL OUT OF MY CHAIR DURING LUNCH AND COULDN'T GET BACK UP.  Another was when I had a seizure in the mail room.  The others were because I was so shaky and visibly pained that I couldn't spit out a single complete sentence while trying to teach.  On the other days, I routinely had to stop talking mid sentence for 30-60 seconds while I winced in pain.  I would forget what I was talking about and the students had to remind me.  It was scary for them.  It was embarrassing for me.  And the pain was incredible.

For 2 years, I've chosen to ignore the pain and push through to stay in the workforce.  Anything that could get the pain under control (and I mean, like just down to a 5 or 6; by no means "gone") made me so loopy I had no business supervising students.  While on leave, I'm able to take those meds.  I can have a "lie down" after a spurt of light activity.  I can actually manage my pain and get the edge off enough to think and spend time with my son and find some joy in living.  The thought of suffering like I did before I went on leave is actually scary to me.  Even if I could find the fortitude to "suck it up," I don't think I could actually do my job in a responsible way.  I can't make decent decisions on the drugs.  Without the drugs, the "background noise" is so intense I can't stick to a lesson plan.  I can't get around my classroom.  I can't use the tools safely.  I can barely open the big door to my classroom.  I have to pee more often than I have passing periods, and it takes me so long to get there I'm late to almost every single class.  Worse, there were a few times I couldn't get coverage to go to the bathroom and had accidents (that fortunately, I don't think anyone noticed.)

I don't know what to do.  Obviously, I can't keep working.  My husband can't work because I need round the clock care.  Some of the doctors who warned me that half the people who have decompression don't improve or worsen have declared my operation a "success" and act like it was a miracle cure and that my symptoms might not be from the Chiari (which is total BS based on every single study and scientific journal I've read.  Most studies cite the pre-surgery brainstem compression as permanent and non-resolveable.)  Others have basically shrugged their shoulders, told me it was non-resolvable and the best they can do is try to make me comfortable.  Which at this point, I can live with.  I'm no longer so desperate to live a "normal life" as I was before the surgery.  The pain is impossible to ignore any more- I have to treat it.  And so far, that's meant not working.  Which sucks.

holiday shopping

We did the bulk of our holiday shopping and wrapping over the last two days. With me being so sick, we couldn't get a head start. We decided it would be best to do it during the daytime, during the week while I was on break so we could avoid weekend mall traffic.

I'm exhausted, and I hurt. It was really, really hard. I've never liked the holidays much anyway (at least not since I was a little kid,) but this was ridiculously stressful. Also, I'm really having to deal with last year's goodbye visit with my aunt. I'm still struggling with that. I know my mom is going to have a tough time with it too.

I feel like I've lost 20 IQ points in the last 2 months. I can't seem to get my head screwed on straight, and I'm not as articulate as I was before. I forget things all the time, and I get confused so easily.

Matt got me a Nintendo DSi and a ton of games. That should keep me good and busy while I recover. He's so thoughtful. Kaiser called me today, and made my appointment to see the neurosurgeon in one week. I'm stunned at how fast this is all moving. When I had that cyst burst a few years ago and they thought it was breast cancer, it took six WEEKS to get an appointment! I can't figure out if it's that Kaiser is really efficient, if no one wants appointments until after the holidays, or if they're in a hurry to do the surgery. We'll see, I guess.

I've put on a lot of weight since I first got really sick in October. I've started working out with Matt, and walking as much as I can handle. I'm trying not to overdo it, but I want to stay mobile. All the websites say to stay lean; that it helps with staying physically comfortable. I also have this terrible feeling that if I don't keep moving, I'm going to permanently ossify into a solid mass. Taliesin has been working out with us. It really encourages me, and keeps me from wussing out. I found a good, fat-hiding dress thingy today that I can wear with leggings. Anything with a structured waistband puts too much pressure on my hips, and makes them hurt so badly that it's difficult to walk.

Also in the plus column, the never-healing wound on my nose that I've had for 2 months seems to finally be healing up. I have a GIANT scar- an 1/8th inch diameter HOLE in my nose. All from a stupid zit at the wrong time.

I think when my scar on the back of my head and neck heals up I want to get a big zipper pull tattooed at the base. My aunt Susan had a star done over her chemo/radiation shunt scar, and I really liked the idea of that. I won a haircut at the Side Show Sirens silent auction, so I think I'll use that to get my hair "fixed" after they shave me for surgery. I've seen post-op photos of everything from a shaved stripe that looked like a reverse mohawk to the entire back of the head shaved, so it will be nice to be able to get a cut that will grow out well and work with whatever I end up with. I usually trim my own hair, getting a "shape" once in a while so I have something to work with.

I got an email from the Bravo awards today. The ceremony is on March 3rd. That means that if I get my ideal surgery date, I'll only have 2.5 weeks recovery if I win. Matt says he'll wheel me up on stage in a wheel chair if necessary. I don't think that will be a problem- I'll be outright stunned if I even make it to finals.

PD Day 6

I'm starting to be practical. I'm writing down my list of things I want to ask the neurosurgeon, thinking about what I'll want for recovery, jotting down things I can suggest when people ask "is there anything I can do?" That, in particular, was a wonderful discovery I made reading someone else's blog. The few people I've told so far have all asked- and I've had nothing to say.

I want to call my aunt Susan. She was an RN, and lived an absolutely remarkable life despite an eleven year battle with breast cancer and being unable to work. I want her to tell me about surgery and medication. I want her to help me figure out how to live with this, and how to live after this. She was so brave and together through everything. She modeled to me what was truly important. I miss her so much.

I'm scared. I'm scared of the surgery itself. I'm scared of the pain, of possible complications, of it not working. I'm scared I'll lose my job, or be unable to work. I'm scared I'll lose my insurance, have complications, be unable to pay for my care, lose my house, and die of meningitis. That must sound totally absurd, but this is the overriding theme in the back of my mind.

Merry Fucking Christmas.

PD Day 5

My lucky bamboo nearly died. I bought it to remind myself to sit down and be thankful at least once a day. Sadly, I haven't done much of that lately. I should start again.

I'm thankful for so much right now. My loving partner who has taken wonderful care of me. A healthy child who is loving and patient with me and doesn't act out TOO much despite being scared out of his wits by this. An extended family of co-parents who gladly take on more so I can heal, and who throughout all of this I can trust to raise my son well should fate render me unable to do so.

That's not very likely though. From what I've read mortality rate from the surgery is really low- only about 2% from the studies I've read so far. Hopefully the neurosurgeon will have more information about my particulars.

Back to the gratitude.

My friends have been wonderful, with visits, calls, support, and kindness. My mother, father, and stepmother have been flexible with holiday planning (too stressful for me right now,) and have made it very clear that they will be there for me through this. My teammates at work who I've told have been outstanding-picking up the slack where I can no longer pull my weight. My other colleagues don't know yet; but I know they're wonderful people, full of love and kindness. I may even finally have a renter for my guesthouse, but I won't count that chicken until it moves in.

I have great health insurance. So far. For 15 years, no one has wanted to run any real tests, and I've been told over and over that there was no physical reason for my pain and discomfort. Yet 2 months into treatment for good old fashioned influenza, and they've found the needle in the haystack. I'm nothing short of stunned. And to think I was actually scared of switching to Kaiser. Of course, I know that they may deny me things that bring only a small quality of life benefit, but thanks to that policy, I can afford this surgery that otherwise might cost me my home.

I've decided to try and move around more. I did a bunch of walking today; I parked at one end of the Big Kaiser on Sunset and walked to my various stops along the campus. I walked up to the bank, and I walked down to Tiffany's house to pick up Caddy's present. I even did a little pilates with Caddy and Taliesin this morning. I feel better this evening than I did this morning.

I'm working on my short explanation of this whole business. I need a brief, reassuring, and honest description, seeing how I'll be doing a lot of that in the near future.

PD Day 4, Evening Edition

Fuck Fuck Fuck Fuck Fuck

What if I wake up after surgery and my symptoms are the same? What if I wake up and they're worse? What if I wake up and have all new problems? What if I wake up and I'm not as smart?

What if I don't wake up?

I can barely stand up and the pain, while only a 4 on the pain scale while sitting down, is persistent. I knit for a little while today while laying down in my son's room while he played video games. I get frustrated and overwhelmed really easily right now; everything is just so HARD. I feel like I did nothing today.

Again.

PD day 4

This has been a rough morning. My face hurts, my teeth hurt, my skull hurts. My fingers and toes feel numb and cold, but my torso is sweating. My right hand is tingly, and it took about 2 minutes to send a text message. I keep hitting the wrong keys when I type. I took a giant motrin, but am going to hold off on the midrin if I can. It does a stellar job knocking out the pain, but at the price of me spending the rest of the day in haze due to the mild sedative in the medication. I'm really sensitive to sedatives.

This is an average "tough" day. It's not an outright "bad" day- there's been minimal nausea and no shakes. I can't believe I told myself that this was nothing and probably normal for 15 years.

Knowing that I'm not, in fact, crazy or some sort of hypersensitive sissy has been oddly gratifying. For half my life, doctors have implied the above with impunity. Now that they can look at a single printout of an MRI, they look at me in wonder and say "how did you live with those symptoms all this time?" They're stunned I hold a full-time job. They're speechless when they find out I'm also in grad school. All I want to do is scream at them collectively "you told me I was fine! Of course I went out and got a job!"

Well, they didn't ALL tell me I was fine. When I was being tested for Narcolepsy at 19 (all came up negative, of course) the first neurologist I saw told me I probably would never live a normal life. I basically told him to go to hell. Doubtless, my life as I've lived it could never be considered normal. I like to think that I've far exceeded the expectations of normal. But I did so through intense pain and suffering that I don't like to admit to experiencing- after all, I didn't want anyone to think I was crazy, or a hypersensitive sissy.

Post diagnosis-day 3

Trying to sleep sucks. I felt like garbage all day, and I'm sore and exhausted. Worse yet, my lack of productivity makes me feel oddly guilty. I've lived a forced "normal" life for so long, that I feel like a total loser on days where I can't push through. The kids upstairs are playing rock band. I've tried rock band, but I could never make all my fingers move right, and it all moves too fast. Same thing with dance dance revolution. Each thump moving through the floorboards robs me of sleep and reminds me of all the things that have never worked right.

There's been a lot of that in the last three days. The sudden realization that this has all been real- that I'm not some lame hypochondriac-has been both terrifying and freeing. My stepmother reminded me today of my dad telling me to "cut the shit" when I was sick. I guess at some point I decided to not be sick anymore. Of course, I was sick, but damnit, I got up and pretended I wasn't. I ignored signs and symptoms until they were unbearable. I subjected myself to endless medical tests that found nothing. I got so tired of hearing about how it was all in my head that I stopped looking for the real answer.

Ironically, it's all in my head.

Literally.

The joint pain. The nausea. The cold, numb extremities. The growing weakness in my right hand. The clumsiness, the dizziness, the vertigo. Hell, I have vertigo in my dreams. The endless fatigue, the bouts of incoherence, the fainting. The headaches. The hearing problems, the earaches, the ringing in my ears.

It's all in my head.

But not for long. The neurosurgeon will be calling any day now, to set the date when she'll open up my skull and make it all go away, leaving only a zipper-shaped scar zig-zagging up the back of my head.