Thank you to Brian W for spot checking my “going on medical leave” sign for work. Thank you to Colin for knowing the email the local FedEx uses for printing requests. Thank you to Isaiah for making me lunch and carrying all the groceries up stairs. Thank you to everyone who liked my costume. Thank you to Pope for helping me choose my costume. Thank you to my doctor’s office for being awesome. Thank you for the Facebook SCDS Support groups for connecting me with others who understand. Thank you to whoever normalized the concept of naps.
Monthly Archives: October 2013
I slept a lot after work yesterday and today has gone a lot better. I even walked two blocks to FedEx and had the poster for the door at work printed. This way when people wonder where I’ve gone they can see. I added some text at the bottom that reads “Rebekah’s Brain Opens December 4th!”
I also have a picture of my Halloween costume. Again, obsessing on brains…
Thank you to the SCDS support groups on Facebook. Thank you to Dave F for a very well timed text message. Thank you to Kim for a very good hat idea. Thank you walls and canes and anything stable that physically supported me today. Thank you to Isaiah for picking me up at the end of the work day. Thank you to Kyle for hot chocolate, Kyle & Colin for joining me for lunch, and Kyle again for being kind every time I told him to be more quiet. Thank you to Byron for his infinite coworker patience. Thank you thank you thank you all.
My symptoms are getting worse. Very glad I’m having surgery.
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!
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.
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.
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.