Tag: Superior Canal Dehiscence Syndrome

Yesterday was a “bad head” day. So is today. I power through what I need to like work. Try to do a few things to make myself feel  normal like take a coffee break with Donna. Get home from work and lay down. Odds are I will fall asleep, wake up late, eat dinner, go back to sleep.  I am going to have a super restful weekend and will try to post more Monday.

There’s something about waiting for Brain Surgery that makes my head spin. Every other thought is “and I’m having brain surgery.” Example: “I wonder what I should have for lunch and I’m having brain surgery.” Work Example: “I wonder if this is a native SAML call and I’m  having brain surgery.”  It’s all very distracting.

I’m trying to plan for it. How do you plan for brain surgery?

It’s all I can think about. Will it be a success? How much will it fix? How long will my recovery take?

I joined some support groups on Facebook as recommended but I made the mistake of reading some of the post-op complaints. I need to remember it’s not an overnight fix. And I’m a good healer. And if I can just stop feeling like throwing up from going for a long walk then my surgery will be a success.

We all have those people who worked at a company we used to work at who were interesting and easy to get along with but never became friends for mysterious reasons like everybody being settled into their existing friend groups. They end up being “friends” on Facebook who post interesting pictures of their travels or links to the occasional article on North Korean propaganda art.

One such of those in my Facebook friends circle had surgery in the last year for Superior Canal Dehiscence Syndrome. Yep. Exactly what I have. Right down to the same side of his head. There are differences, there are always differences, but I met with him tonight and he’s the first person I’ve had look me in the eye with the same tiredness I feel and true empathy. The sort of empathy that comes of having the same symptoms, the same annoyances, the same struggle to make health decisions while struggling to make simple decisions.

Meeting with him was invaluable. I didn’t realize how important connecting with other people with similar experiences would be. I am tired now from going out and teary from being understood. Bed soon. Meanwhile gratitude. So much gratitude I did my thank you roll call before my post.

My mother just called. I was telling her about the pictures I took while Isaiah and I were out of town and how I was uploading them to Flickr. Then I said, “I don’t know where my phone is but I’ll upload more later.”

After I said goodbye I went to hang up and said to myself, “Oh, there’s my phone.”

Then I started laughing and called Mom back to tell her I had found my phone, I had been talking on it.

She laughed too because she hadn’t thought of that solution either.

I spend a lot of time in bed these days but it is nothing compared to the time I will be spending in bed the three weeks after brain surgery. I am therefore brainstorming how to make my bedroom most liveable. Potentially related to my need to have control over something (anything) in an otherwise powerless situation.

My resources include a bedside table, seven foot bookshelf, small craft table, comfy chair and two dressers.

We already have a TV and a Playstation set up here in the bedroom. I will probably adjust the location for more comfortable viewing. I do plan on watching movies but what movies to keep nearest to me? Up and other Pixar movies seem like a good idea. What others? Should I add a few video games to the mix? I can’t play a lot now because I’m dizzy and the surgery is supposed to have some dizzy side effects but what about a week or two after? Should I be optimistic? Or at least be sure I have the farmer video game where I can raise chickens and milk cows?

I also like the idea of keeping books within reach. What books?

Craft projects, what craft projects?

I am already bored with being sick. What can I do to make being sicker more bearable?

It’s hard to focus. Today is a bad head day. I actually threw up. I never throw up. Asophougus of steel. All I can do is lay here and quasi-think.  Need more distractions.

My husband and I had planned a four day weekend for his birthday. We made it through three and are now home. Even going slow I can’t go as far as I used to.

It leaves me feeling very very sad and petulant and hating my head. I love being active and I hate that the more active I am the more my head hurts, the more I feel like throwing up, the more my brain seems to spin behind my eyes.

Sure, I’ll feel better after laying still for a day or so. It annoys me that I wasn’t even a quarter as active as I wanted to be and I still have to pay with so much down time. It annoys me that I have to stand at the view point and look up the trail not run up the trail.

The list of things I will do when my head is better is getting longer. I hope this surgery accomplishes as much as I hope it will. I have to believe it will. It will.

I got a call from the doctor’s office. The scheduled surgery is officially approved by my health insurance. I find I don’t have a lot else to say.