Do I hear my pulse or pulsile tinnitis? Do I care?
Superior Canal Dehiscence Syndrome
Thank You Roll Call
Thank you to Isaiah, my husband delightful, for washing the floors today and driving me to and from my audiology tests.
Thank you to Isaiah again and also his sister Caro for figuring out the best time for her visit which I only just realized they did. She will be around to help out post-op to take care of me while he’s at work.
Thank you to all my Words with Friends friends including new friend M.
Thank you to Laura Z for the awesome hugs cards. Nobody sends better card hugs. See!
Superior Canal Dehiscence Syndrome Symptoms: Vertigo
Vertigo is an interesting symptom. My response to vertigo is part of why the experts think my SCDS is a birth defect that became worse in the last year (probably due to head trauma or maybe just finally bad enough to notice). When they asked me if I was dizzy I said, “what is dizzy?”
What is dizzy? I guess the best answer is the feeling you get when you spin in a circle long enough. That doesn’t feel very different from everyday for me. I mentioned I like being on boats and the technician running the vertigo tests was surprised. What can I say? I’m an adventurer. I also like the swoopy feeling of take-off and landing on a plane. I get the best adventures from the simplest things.
Balance is something I’ve always worked hard at. I was an awkward child who strove to be graceful. I took dance and gymnastics and played baseball. I didn’t mind being the worst at things because I just wanted to do them. Later in life I practiced more dance and yoga. I developed all sorts of ways of feeling where my feet were and how my body was to memorize where it should be. It was never a sensation I felt in my ears but more an alignment of sight and muscle. Needless to say I did well enough but never excelled.
I also didn’t think this was strange. The fact that spinning in a circle made little difference to how I felt seemed like a sign of superior balance not a sign that I was constantly imbalanced. Sure it took six years to learn to ride a bicycle without training wheels and I was constantly spraining my ankles but that was a physical weakness of some sort right?
Looking back now my whole life has rearranged itself. Those times I collapsed from exercising? Maybe my blood sugar wasn’t actually low. When I broke out in a cold sweat and had to lay down at the state fair? Maybe it was the loud crowd and the spinning rides not a strange flu that had no fever and went away with bed rest.
I’m questioning the explanations of a lifetime and I have no facts to back any of it up. It wasn’t until August 25 of this year that I got the specialized CT Scan that showed there was a hole in my inner ear.
It’s very disorienting. It changes my reality too much. So am I dizzy? Yes. I get seasick when things move around me, even little things like light reflected from a car spinning past through the window. I lean on walls and lately have even started swaying which feels like the first step towards falling.
The technician at the surgeon’s office says the tests prove I’m dizzy whether I know the word for it or not. I really appreciate that. It’s like having a thermostat to tell me if it’s cold. Sometimes it’s cold and I’m not or it’s warm and I think it’s cold. A measure is a wonderful thing.
Being dizzy, for me, is not the world spinning around me like the movies make it appear to. Instead it is me spinning inside the world.
Thank You Roll Call
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.
Bad Days Are Followed By Good Days
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 Roll Call
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 Roll Call
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!
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.