Sunday Afternoon

Having a very relaxing day. Breakfast with Pope, a nap, then Pope ended up with a free afternoon so I helped him shop for curtains and he helped me shop without Isaiah.

From the outside, except for really slow walking, my day appears beautiful. Through a certain lens my day was beautiful. Just ignore the horrible stabbing pain in my head and all the annoying noises my ear hears inside my head.

It’s like I live two lives. One is an amazing happy fulfilling marriage in a great apartment with two fantastic cats, a challenging and fun job. My friends and family are over the top amazing. The other is head pain, confusion, inability upon inability, spinning dizziness, fatigue, and the sense that my lists are all incomplete.

A Whole Week!

I made it through a whole week of work. No doctor days. No sick days. No half days. Not even working from home. Now if only my physical head felt as triumphant as I did.

Haven’t had a headache like this in a while. Light sensitivity is really the big difference. Everything else is just an increase of other symptoms. Louder ear sounds, more high pitched skeeeeeeeeeeeee noises, stabbing pain and dull pain both more, sensitivity to outside sounds is up, irritability, fatigue, etc.

So yeah, I am a happy, miserable success!

Fidgeting

Lately my thoughts have been fidgeting. I try to focus but everything keeps pacing around this one thought: brain surgery. I feel very repetitive. I think I’ve even written about this before. It’s very hard to focus. Hard to compose posts. What could I write about? Brain surgery. I have three weeks of work left before… brain surgery! I should really make a poster to remind myself to rest and ask for help after… brain surgery. I wonder how much I will be up for while recovering from brain surgery.

I have gratitude that I could write about. Many people to thank for a variety of large and small acts.

I have symptoms, still so many symptoms, I could describe.

Maybe it’s because I’m still going to work and work is exhausting. I really do come home and take a two to three hour nap after work every day. When I wake up for a late dinner my brain feels unsurprisingly fuzzy.

Today I really wanted to post so I’m posting about posting.

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!
Card from Laura Z

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!”

Brain Surgery Poster

I also have a picture of my Halloween costume. Again, obsessing on brains…

Brrraaaiiins

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.