Thank you to the mystery person who sent me a bright orange sitting up in bed pillow. Thank you to all the people who are giving me their emails for the “how’d the surgery go” mailing list even though they know I already have their email. A special huge thank you to my most devoted Words with Friends friends JohnD, LisaR, and Caro. The distraction is invaluable while experiencing multiple types of sick combined with insomnia. East Coast rules at 4 a.m. PST!
Category: health
Superior Canal Dehiscence Syndrome Symptoms: Ear Fullness
I normally catch every cold and flu. This year has been surprisingly light on “normal” sick while experiencing the “this can’t be happening” sick. I think because I’m resting up a lot and getting out a lot less.
A feeling of “fullness” in my ear is an every day portion of my SCDS symptoms. If I were a dog I would be shaking my head all the time. It feels like I have water or a cotton ball in my ear. It wasn’t until I was diagnosed and saw “a feeling of fullness in the affected ear” on the symptom list that I stopped compulsively cleaning a perfectly sparkly clean ear. Imagine a dish that appears clean but feels greasy no matter how many times you wash it.
Last night I woke up because my ear felt so full I could have sworn I was drowning. Four in the morning and completely adrift I cleaned out my ear. It didn’t help. I tried going back to sleep but kept waking up. Then I started waking up coughing. At about seven I sent a sick note to work and took some Robitussin. I slept well for a while, no more coughing, woke up around eleven and realized Robitussin is super dizzying (for someone with SCDS).
It turns out that while “there’s something in my ear” is the normal symptom there’s another level of it for SCDS with head cold. Let’s call it the “Star Trek Wrath of Khan Ceti Eel Experience.” I was tempted to link to the worm burrowing into Chekov’s ear but instead here’s a picture of Chekov knowing the worm is on it’s way there as it crawls across his face. An image search of “ceti eel” will give you all the graphic detail you need to sympathize. Or if you ever saw Wrath of Khan the only more memorable scene is Kirk screaming Khan’s name. I put forth that people focus on that scene to get the ceti eel scene out of their minds.
My ear is currently back to a feeling of fullness. More full than some days but not as bad as the four a.m. wake up.
Nesting & Thank Yous
I’ve a row of books I may read, a row of movies I may watch, some handy things in case I feel crafty. A lot of optimism on the bookshelf by my bed. Most important it will be clean and neat, equally easy to sleep in as be busy.
I hung the scarf my previous coworkers made me for the last surgery where I could see it. I think I’m going to put about as much beautiful stuff of the like as possible. Things given to me, things made for me, things that will remind me there are people out there rooting for me.
Speaking of which. Thank you to Glory for thinking of me, to Stacey for her generosity, Osiris for hosting me, Caro for making plans to come visit for my post-surgery birthday, and Winnie always for her eCards. I am surrounded by amazing people.
“Bad Head” Days
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.
Surgery Brain
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.
SCDS Support
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.
Thank You Roll Call
Thank you to work for continuing to be considerate and understanding. Thank you to Allen B for joining the Words with Friends friends. I cannot say how much all you who distract me with Words with Friends are helping. Thank you to Dave F for meeting up to talk about SCDS as someone else who has had the issue and had surgery to take care of it. Also thank you to Dave F for “Walker Texas Ranger” the best walker a girl could have to help with post surgery vertigo. Thank you to my husband for being super supportive always.
Aaaaaand Brain Fog
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.
Thank you Roll Call
Thank you as always to my Words with Friends friends. Thank you to Schwern for the Wonder Woman pajamas and the mysterious benefactor who sent the super comfy sitting up in bed pillow. Thank you to John & Melissa for getting me the lambic oh so long ago that I am now drinking because if I’m going to be this dizzy then I’m going to be drunk. Thank you to my husband for being out while I make poor decisions because I am still free to make poor decisions. Thank you to my mom & stepdad for the very pleasant visit while we were out and about. Thank you to Apio for cat sitting. Thank you again to Jeff for the vertigo cane, I ended up using it some today after I threw up because having my hand on a stable object helps me with which way is up and reduces vertigo. Thank you to V for thinking of me. Thank you to the people who make movies that end up on Netflix. Thank you to the TV show Midsomer Murders, especially whenever anyone says murder as “meurrrder” in that delightful British way.
Preparing for Bed Rest
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.
Rebekah Golden 
