Category: health

I just woke up from a five hour nap. Went to see my SCDS surgeon then bumped into Molly and had lunch together. Molly is my surgery buddy. We met on a support group for people with SCDS, both live in Portland and get along really well. Her SCDS doesn’t make her quite as loopy as mine does.

Anyway, all of my surgery questions are answered and all of Isaiah’s surgery questions are answered. My next doctor thing will be in hospital actually having my craniotomy.

I sent out the big email to everyone about surgeries and holidays and birthdays and whatnot. My birthday is ten days after the surgery. My doctor says I can drink. Isaiah says Mojitos are not a winter drink. I told him that we’d crank the heat up in the house until it was Mojito weather. I think I won that one.

Still feeling a little loopy. Lately though that’s like saying my head hurts. My head has hurt since May. At least I can pull off complete sentences and the sound of my own typing is only mildly annoying.

I’m going to try to finish out my symptom descriptions in the next few weeks. The plan is for the surgery to fix the symptoms and I feel writing about them in the present tense is very important.

Thinking of symptoms I was describing the weird noise that happens when I turn my head to fast and the doctor said it’s probably the sound of my brain moving inside my head.  That’s a little freaky.  Ok more than a little. That alone was worth a five hour nap.

Timer for all cooking. Mostly avoid cooking.

iPhone for calendaring, reminders, notes, pictures of things to remember, texting.

watching predictable tv or listening to monotonous music to drown out unexpected noises

Try not to scratch face or head. Or talk loud.

Fluffy socks mute the sound of my feet hitting the ground.

Do not bend over, learn to pick up objects from the floor with my toes.

Do not move quickly.

Do not clap my hands.

Keep blood pressure low, loud pulse bad.

Touch walls or other objects to keep a sense of where down is.

Avoid noisy fabrics.

Keep eyes unfocused. I know, it’s weird. I don’t know why this helps with the dizzy.

Avoid noisy food.

Naps.

Complain a lot.

In fourteen days, also known as two weeks, I will arrive at the hospital for my craniotomy.

Every day I feel more glad that this will happen. Every day I become more scared about this happening.

The surgery feels like the beginning of a second chance at life, hiking, camping, running, dancing. An infinite future stretches out beyond it that glimmers on the horizon. I’m also completely focused on that one day and no matter how much I try reality doesn’t seem to go beyond it.

The surgery could be described as a door. I suspect I know the wonderful things on the other side but reality is that it’s closed right now. It (and my head ha ha) opens on December 4th. Hopefully it opens onto something wonderful.

After all it’s 24 days until my birthday…

 

Ever bang one side of your head against something sharp? Or get cuffed on one side of the head? Where your ears ring and there’s a sharp pain and you feel sick to your stomach?

Every little noise makes my head feel like that riht now. Even the sound of the typing. Even the sound of Isaiah opening envelopes to pay bills. EVERY noise.

And I feel like this all the time. To degrees of bad and not so bad. Today is bad. Came home early from work. Slept a bit.

Why am I typing? I can’t lay in bed forever. I’m dying of boredom. DYING of Boredom.

Ok, typing too much. Ow ow ow.

Post Script: and the sound of my feet when they touch down on the floor, or when my skin brushes up against something, or the creak of my vertabrae when I move my neck or the ever so subtle sound of my eyelids popping when I blink, or the sound of the cat scratching her ear in the other room, or the hum of a computer or game console or the click of that little button on my iPhone – why isn’t there a way to navigate without clicking? Or the sound of a pencil or pen scratching paper or pages turning, or even my fingers tapping the glass on my iPhone like tiny tymphonies.  I cannot escape the noise. The noise is inside me. It even follows me into my sleep. Oh and cars driving past or the flash of bicycle lights which feel like sound or the chirp of birds or the woosh of wind. My pulse. Oh god my pulse. There’s no escaping my pulse. No wonder before they figured out this was all about a #mm hole in the inner ear that people were thought to be schizophrenic.

We went to hang out with Isaiah’s sorta-sister Aimee, her husband David, and their son Bodhi for brunch. Bodhi is delightful.

After breakfast I took a nap because my head was hurting. I take a lot of naps. Though they had a spare room with a bed I chose to curl up on the couch and just close my eyes for a bit.

At first Bodhi didn’t get it. He kept saying “Aunt B, come look!” When his mom explained I was napping and suggested he give me a toy to cuddle. He brought me a lion. Then a puppy. Then a bird. Then more toys that I didn’t look at because I just kept my eyes closed as he piled more stuffed animals on.

Aimee tried to tell him to “leave Aunt B alone” and he responded “I’m giving her friends.”

I knew visiting would be exhausting but also very very rewarding. Bodhi’s generosity was so warming. Aimee and David always so loving and kind. It was a great visit.

Some days are tough. Some weeks are tough. Some times I am just waiting for my surgery and hoping for relief.

There’s nothing like a three year old piling snuggly toys on you to make a moment feel over the top and life a lot more than just head pain.

PS: Yes, I am “Aunt B” or “Aunt Bee” and Isaiah is “Uncle Slim.”

My husband and I are both introverts. Me less so than him, though even that is debatable. One of the things we strive to do to keep our relationship healthy is to give each other “alone at home” time. We are also both geeks. I am a computer programmer with a minor gaming habit and he is a gamer with an intellectual bent. “Gamer” in this instance refers to card games, board games, video games, Dungeons & Dragons (and other RPGs), and just generally games.

Tonight he has gone to our favorite game store, Guardian Games, to play Magic the Gathering. I don’t go as often even when I’m feeling well.

I am home alone. Normally this is a relief. Down time without any people around, not even my awesome fella. Tonight it is not so great.

Alone with my thoughts. Alone with no one to talk to. Not that Isaiah talks much but I talk. He’s a very good listener and when he talks it’s always pretty fantastic. I can ramble and he can pinpoint the positive things to focus on and the wild worries of a difficult mind.

Nineteen days to my surgery. Less than a week to my questions day with the surgeon. A week and a half of work. A major holiday. Some house cleaning. A few happy hours, a couple of lunches. Nineteen days.

The surgeon is going to peal back a flap of skin and cut a two inch square in my skull. I will be dehydrated and pumped full of steroids to make my brain smaller (seriously) so he can lift it out of the way with an object I imagine looks like a shoe horn. Once my brain is out of the way he will check out my cochlea and semicircular canals which all together are about the size of a dime. The key area is my superior semicircular canal which is where the bone thinning is. He will then mix up a special cement made from my own bone dust. He will smear the area with a special gel that will prevent the cement from getting into the porous bone. Then he will slather on the bone cement. Once it’s in place he’ll put everything back as close to how he found it as possible. The two inch square of skull will be latched in place with tiny titanium plates. The flap of skin will be sewn back down with desolving sutures. I will have a crazy groovy scar that will get covered by hair over time.

I will be dizzier, crazier, in more pain, swollen from my head being held in a vice for five hours of surgery, unable to chew, unable to pick up my 10 lbs cats, and hopefully free of weird noises in my ear. Over time, months, the bad stuff will go away and I will turn into a graceful diving, swiming, mountain climbing ballerina with wings. Yeah.

Or I could be partially deaf in one ear. Or my symptoms could change, neither better nor worse. Or or or or.

I really hope I am able to read or do other distracting things during recovery. I know at first it’s going to suck and I am really going to need the distractions. Like tonight. I could really use a distraction tonight. Something more engaging than TV. Some nights it’s just not fun to be home alone.

My surgeon is working with someone studying the before and after effects of brain surgery on cognition. I did two hours of cognative testing today to contribute to this work. Attention span, memory, shapes, definitions, spatial something or other, whatnot, etc. I did ok but it was exhausting. And I’m not fixing typos here.

Other testing to date:

• A hearing test: passed.
• VEMP testing: passed.
• Balance testing: failed.
• Visual balance testing: failed.
• Pre-op physical: passed.
• Pre-op blood tests: passed.

All that’s left is the final pre-op conversation with the surgeon, a haircut (because I want a nice, intential bald spot), and the surgery itself.