I realize that the majority of people who don't actually know me that read this blog read it because they're facing surgery for their Chiari.  I feel like every once in a while, I have an obligation to update my condition...because there's so little information out there.

I warn you, gentle reader, this story isn't really going to have a happy ending.

My physical condition continues to deteriorate.

Motor control loss.  Vertigo and equilibrium issues.  Mobility loss. Ever worsening pain.  Tinnitus so loud I have difficulty in conversations.  Of course, my conversations are made difficult by my increasingly obvious cognitive degeneration.  I'm slower, less sharp, less articulate.  I have difficulty holding focus and forget what the conversation was about in the first place.  I'm still having grand mals, and Imatrex seems to help, so my neurology team thinks they're actually migraine-related.  I need help bathing, walking, dressing, and sometimes eating.  Some days I only need some help, some days I need help with everything.

Some days I lie in bed and scream and cry from pain until the painkillers kick in.

Some days I shit myself.

Some days I'm really scared for what the next 45 years of my life will look like.

After a little more than a year since I had to stop working, I'm finally officially retired.  My disability pension should be kicking in soon.  That will be nice, because our expenses currently exceed our income and it had been getting pretty dire.  

People like to offer me all sorts of advice that they somehow think will be "helpful," like I haven't been living this disaster 24 hours a day for YEARS.  As though we're sitting around, helpless despite the abundance of service information, medical studies, assistance programs, and, of course, holistic/natural/eastern/woo-woo/hocus-pocus/fad diets.  

Whatever it is that you feel compelled (for whatever damn reason) to tell me I NEED to do, please keep in mind the following:

A.) Yes, I already know about it.

B.) Yes, I've already tried it.

C.) No, it did not work.

Worse that the actually practical things like acupuncture (stopped working after my brain surgery,) elimination diets (NOPE, no effect whatsoever,) applying for medicare/In Home Support Services (I qualify for NOTHING,) are the truly off-the wall suggestions that are outright insulting.  MULTIPLE people have suggested that my husband and I divorce and I forfeit my home to him so I can get government assistance.  ARE YOU FUCKING KIDDING ME?  Why, WHY would anyone ACTUALLY say that?  Seriously.  Think before you open your fool mouths, people.  

Anyway.  

I'm working on the "last big thing" I'll do before I can't really do anything anymore.

Every day above ground is a good one.

For now.

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.

Better Every Day.

Every day, I hurt a little less and feel a little more energetic. I'm still not allowed to do anything, so I have to be very careful. All the same, I can make crafty things and go for walks and eat slightly more ambitious foods. I'm incredibly grateful for how well I'm healing. I do think I'll be racing the clock to get back to work in September. At this point, I'm not even allowed to carry my purse.

I almost forgot how sick I was before the surgery. Matt had me go back and read my blogs because I wasn't sure that I was actually feeling better. I was wrong. I'm WAY better. No shakes, no arthritis, few headaches that aren't located in the immediate surgical site, very little nausea, and I'm only sleeping about 9 hours a day, which is borderline miraculous.

I'm trying to formulate a little recovery plan which includes substantial weight loss. The only exercise I'm allowed is a slow-paced stroll, so I plan to stroll a little farther everyday. I also plan to eat small meals preceded by a very large medium-to-dark green salad sans dressing, other than breakfast. The only thing I can handle at breakfast is one piece of white toast with a little bit of butter and hot tea. About half an hour later, I can manage to get down some fruit without wanting to hurl.

I'm thinking about starting a happiness project. It's normally a bit hokey for my taste, and I think it's my mother's genetic material expressing more dramatically as I age. Of course, she's consistently pretty happy, regardless of life's little curve balls, so perhaps there's something to it all.

By the way, I won the Bravo Award.

Life: Post-Crainiotemy

So the surgery is over. As you've probably guessed by now, I woke up and haven't lost any substanial life functions. My head is finally clear enough that I can think and stay on track with something for at least long enough to blog about it.

There are subtle differences between what my life was and what it's metamorphosing into. I still feel like shit (physically) most of the time. It gets better every day, even if only by a little bit. I'm hopeful, but not too hopeful, mostly due to my ridiculous fear of disappointment. I suddenly have a sense of smell again. She had taken a hiatus while I was a freshman in high school, and (most likely having found a nicer locale,) had seemed destined never to return. While her homecoming has been welcome, she's a dramatic little bitch and now everything tastes funny.

I'm finally able to resume some creative pursuits again. It's tough, given that I can't turn my head or pick up anything that is heavier that 5 pounds, but anything is better than nothing. I even did a bunch of mending, for christ's sake. Being out of bed is fabulous. To be honest, my body is so sore from lying still and doing nothing that being in bed is now almost too physically taxing to be considered unless I am in a medication-induced slumber. I want to do yoga so badly it's tonto. I love that word. There is no reasonable, single-word English equivalent. Tonto is like a cross between ridiculously stupid and soft in the head. My mind is still pretty soft-boiled from the medication and surgical stress, so I can't think about anything that's intellectually stressful for very long, meaning that working on my thesis and the course outlines I've been re-writing are right out. Reading my email is stressful, for fuck's sake.

Not that I'm not exceedingly grateful. EXCEEDINGLY.

I woke up. I'm not a vegetable, I don't require machines to eat and/or breathe, and all my extremities seem to be functioning as designed. At some point, my neurosurgeon will allow my fiancee and I to resume sexual relations and I'll be able to do yoga and ride my tricycle and build things and go back to work.

I'd like everyone to know that our society does a SHITTY job of including the disabled in regular life. FYI. While I'm allowed and encouraged to take little walks everyday, long walks or shopping are right out. Sometimes I use my own chair, but it's the sort of thing the hospital lends you and is awful in every way from the worn out brakes to the lack of foot rests (wtf?) Often, I depend on those electric scooter things in stores or I can simply forget it, because Matt can't push me and the cart at the same time. Last person forgot to charge it? I'm SOL. The best is when the customer service person says "oh, I don't think that's been working for a while." WELL, FIX IT ALREADY, ASSHOLE! Today, I got to ride in one of those humiliating multiple child seats designed for beleaguered moms with multiple spawn. My favorite part is how people give me dirty looks when I get out of my chair and walk somewhere. I feel like I need to wear a sign that says "my legs are fine. It's my spinal cord that's the problem, dipshit."

Panic sets in.

So I'm trying to blast my way through my thesis while prepping for the Bravo Awards site visit, grading finals, learning to crochet so it's second nature after my surgery, spending time with my son, and trying very, very hard not to panic.



I'm so damn freaked out. I mean, sure, who wouldn't be. However, I'm rather used to having everything very together and I'm not doing such a hot job on that right now.

Fuck you, world. Can you cut me some slack for a few months so I can do the things I really want to do while I still can? I mean, sure, I'll mostly be back to normal within 6 months to a year, but DAMN IT there are things I will never ever be able to do again, and I'm sure as shit not doing them right now AM I?

No. I'm reading study after study on an educational practice that I find iffy at best (and/or worst) because frankly, so far no one has ever conclusively proven that it does fuck-all despite over 30 years of it in the American classroom. But since we're all bracing for more layoffs, I really do need to finish my Masters in time, just-in-case. How sick and sad that I've spent 9 years in the classroom-an award winning educator-yet I'm still quaking in my New Rocks over layoffs like some 1st year intern. So, instead of heading down to Disneyland with my brilliant child and the LOML on Monday to ride a looping rollercoaster for the first (and likely last) time in my life, I will instead be reading another 10 tragically boring journals on a topic I really couldn't give two shits about. Instead of spending the weekend in San Fransisco roaming my second-favorite city in the world with a wonderful man that I would love to share it with (sorry NYC, you're #4,) I'm going to instead grade epically awful essays and TRY to focus on the slowly blooming aesthetic perception and valuing that lies beneath the horrendous grammar and stunted vocabulary of shamefully under-served urban minority youth.

I'm glad we did the Grammys last year. I don't think I'm strong enough this year for them. I know I couldn't possibly get a dress made in time, and frankly, I don't want to put that kind of effort into a gown that I will hopefully never, ever be able to wear because I will never, ever be this fat again. Not that I worked out today, or anything. But then, I'm hardly eating too. I can barely eat these days. Even when I'm hungry, everything sounds awful. The thought of eating chocolate, once my great joy, makes my stomach turn a little.

I've been "forgetting" to make the appointment for the estate lawyer. It's not on purpose, I just only ever seem to remember after the end of the business day. Hell, I never remember until after midnight.

I want to plan our wedding. I need to do my taxes. My heart and soul and every fiber of my being screams out to create some lasting thing of meaning and beauty and I just can't do it right now because I'm racing the clock so that when I finally can get out of bed and get on with my life I'll have a life to go back to.

I better not fucking die from this because I'll have left far too much undone and it would just be horrendous. And I better get around to writing that "advance directive" because it would actually be a fate worse than death to be an uncommunicative prisoner in my husk of slowly atrophying flesh lying there thinking about all the things I never finished.

Fuck.

I'm more than a wee bit depressed with all of this.

I'm exceeding lucky and thankful for Matt. How he puts up with me I'll never know.

So much for that Masters helping me with job security.

I'm trying to get my homework done for GED 691. She assigned 70 pages of reading in addition to working on our thesis, and frankly, it's a bit much. I've got a pretty nasty headache today, and standing up is something I'm going to need to avoid for the rest of the day. Thank goodness for the adjustable bed. I'm actually able to work on my laptop while supported enough to be comfortable.

I'm scared about next year. The numbers for the education budget for next year are really, really bleak. I'm nervous about getting laid off, and I don't think I'm going to get moved up. Even though my admin credential is done and my Masters will be done this summer, I'm not really going to be in suitable condition for job hunting over the summer. That was my contingency plan when I started my Masters 2 years ago; if I got laid off, I could find work as an Assistant Principal somewhere.

Complicating the matter is the fact that keeping my current insurance is now a life-or-death matter.

I'm completely freaked that I'm going to get laid off in July and not be able to afford my mortgage, let alone my COBRA payment. If that happens, I won't get adequate post op care (let alone the corrective surgeries that 25-30% of patients need.) I'm scared I'm going to lose my job, lose my insurance, lose my house, develop hydrocephalus, get meningitis, and die.

Scared enough that it makes me cry when I think about it and keeps me up at night.

What a day.

I told my stage crew kids today. They've been eying me suspiciously and repeatedly asking if I'm okay. I figured I probably should tell them that I don't have cancer, so they will stop worrying. Now that I've notified my principal and my director at the district office, I was finally able to tell them. I think they've suspected much more than everyone else, because they spend so much time with me. They took it really hard. I think it's really difficult for them to think of me as mortal and fallible. I tried to parse it in as hopeful terms as I could; I know that's what's been helping me cope.

Our new bed arrived today. I'm so glad we took this leap. I'm finally comfortable for the first time in ages. The mattress arrived last week, and I've had the best sleep I can remember. Sound, deep, and painless. I'm used to waking up in pain a few times a night, but since we started sleeping on the new mattress I've slept soundly and peacefully straight through every night.

I need to make a consult appointment for my end-of-life paperwork. I've got my estate all figured out, but I'm sorta torn on my advance directive. I'm not quite ready to deal with the threat of a persistent vegetative state.

My surgery is most likely going to be April 27th.