My husband just got laid off from his job and short term disability is two weeks of no pay for me followed by six weeks of heavily reduced pay. I think I’ll take this moment to prioritize this button from the “You Can Help” list…
Monthly Archives: October 2013
Back when I was just your average geeky girl in P.E. class I was often told to “push through” whatever I was experiencing so I could achieve another lap or a higher climb or whatever. I hated the concept of pushing through. To me it was the opposite of “listen to your body” wisdom.
Today I woke up with a horrible headache. My little toe hurt because I stubbed it really hard on the stove last night and the ankle connected to the other foot felt wobbly. I ate a sedate breakfast, tried to lay in bed playing video games, got frustrated and moved to the living room to sit on the couch and watch TV. In the living room I could smell that it was kitty litter changing day and knew it wouldn’t get changed until Isaiah got home from work. I felt an instant of self pity which immediately transformed into a bull headed desire to push through.
I got up and changed the kitty litter then straightened the living room. There’s a chance I will pay for this later with a larger headache. In fact my headaches are always larger after I am active. Who cares though? The kitty litter doesn’t smell, the living room is livable. I am happy.
Thinking back I would never push through for P.E. because I had nothing attached to doing well in P.E. I have a lot attached to cleaning house, making it through a work day, appearing healthy, being independent. My conclusion is that even the wimpiest geek who never touched the ceiling on the rope climb will push through for things that really matter to her.
Today I came home to a pile of boxes in the apartment hallway in front of my door.
It turns out deliveries from my cousin Jeff were not done yesterday they continued into today! I got my vertigo cane (makes it sound so much better than old lady cane), the special pillow for keeping my head at the right angle while sleeping after surgery, and the thing to help me grab stuff from the floor. Thank you Jeff!
I also got a great card in the mail from Laura Z with the most awesome drawn hug I’ve received.
Words with Friends friends of awesome now include John D and Kyle R has popped back onto the screen. Ongoing thanks to Caro, Lisa R, and Sammy G.
Thank you all!
Today I went to brunch with my friend Pope. During our conversation he mentioned my blog is sorta sad. I told him I planned to do a “post surgery plans” post and he said that was sad too because I couldn’t do this stuff now. Fortunately he understands that now is just a sad time and a window into my mind right now isn’t going to be bright and shiny joy.
Welcome to my sad blog.
Overall I had a good day, an active day which led to a bad headache. I went to brunch and Halloween shopping. I came home to some amazing deliveries. More about that in my Thank You post.
The post I want to do is a list of things I plan on doing after my surgery, some just because, some because my hearing will be better, and some because I won’t have the vertigo issues.
- Go see Rigoletto at Seattle Opera – ambitious because of the dates
- Visit John and Lisa in NYC for cherry blossom season
- River rafting over the summer
- Finish some overdue baby quilts
- Walk a lot
- Take a backpacking camping trip
- Do one of those deep overall house cleans that drives Isaiah crazy because it disturbs his sense of restfulness
- Run for the fun of it
- Climb Mt Hood
The list would be longer but the typing is hurting my head and I still want to do my Thank You post.
Boxes were delivered with the mail today. I didn’t expect such an outpouring so soon!
Huge thanks to:
My cousin Jeff got me rainbow socks to wear in the hospital, a special yarn tote, and some really neat looking books including a book of poetry he wrote himself. Poetry! Fantastic!
Robi sent me magazines because she knows I like to collage. Right now the sound of scissors cutting paper hurts my head but it’s still fun to read the magazines.
Words with Friends awesome people: Caro, SammyG, ChrisL
I think my “favorite” symptom is one called “brain fog.” Seriously. Brain fog.
My original search for answers was based on what I considered my primary symptom: headaches.
I thought that the confusion and inability to focus was just a side effect of having a headache that lasted for months without a break. Then in discussing Superior Canal Dehiscence Syndrom (SCDS) with my doctor I found out that it is considered a symptom all on its own.
I mentioned this to a coworker and he said something similar happens to new parents. He says the exact same thing every time I tell him that brain fog is a symptom of SCDS. He’s a parent and good at repetition.
So yeah, I can’t think as well as I used to. Really, physically can’t think as well. I’m late more often, forget that I have to be places or call people or do things. I forget how to do things. People’s names when looking straight at them. Words. Putting thoughts together is an effort.
It became enough of an issue when I almost missed one of my doctor appointments that I sat Isaiah, my husband, down and had a talk. Now my husband comes from a very relaxed family and I love him for it. Our relationship has always been me organizing and him keeping me from getting stressed over organizing. We are a good partnership. He took on all my chores and takes wonderful care of me without hovering.
Me, “Isaiah, I’m not doing well. We almost missed that doctor’s appointment and I can’t be responsible for remembering them. I need help.”
Isaiah, “Ok, we’ll get you an iPhone.”
Note how adeptly he dodged being responsible for me. Good man!
*It should be noted that when I “quote” I am never really quoting, it’s always a paraphrase based on how I remember it.
Anyway, I have an iPhone now that I lean on for calendaring, note taking, reminder lists, whatnot. I’ve also starting taking a ridiculous number of pictures of the cats. Brain fog. Yeah.
From when this new headache started in May my only question has been “How can I stop it?” Once I got the diagnosis of superior canal dehiscence syndrome all I wanted was to take a nap because my question was answered and the quest to do what was necessary was about to begin.
My mother’s first question when I told her was “How did this happen?” She’s one of those questing, curious people which is why she was so good when she worked in QA.
I have to admit I’m not the best listener these days. The headache is distracting. What I remember from the conversation with the doctor is “mumble mumble head trauma mumble mumble birth defect.” I should probably ask Isaiah to write this post for me but he would probably just write “it’s all conjecture.”
So here’s some conjecture.
I believe that I was born with (or developed early on) a tiny tiny tiny hole in my superior canal. The best reason I have to believe this is I have always hated loud noises and it took me six years to learn to ride a bicycle (balance).
This hole was enough to make me dizzy if I exercised too much (I always thought I was out of shape but really? dizziness?) but not so much as to cause bad headaches or nausea or a lot of my other current symptoms.
Then came head trauma. “Mumble mumble change in blood flow in the brain. Mumble mumble.”
Oh yeah! Last year’s embolization of those two arteries of the many that make up my dural arteriovenous malformation. That would change the blood flow. (duh) The doctor (in a moment where I heard more than mumbles) even said “Brain surgery counts as trauma.”
So take a tiny tiny tiny hole living in a comfortable, stable environment and lessen the pressure put on it by an excess number of arteries in that same area. Pop! (No it didn’t literally pop.) Tiny tiny tiny hole finds new freedom to grow and expand!
Boom! Headaches, extreme dizziness, nausea, brain fog, trouble talking, etc etc etc.
As I met with doctors, had scans and tests done, and generally searched for why I don’t feel well I made jokes about brain surgery. I’ve been doing this since May when the quest began. I’m only just now facing up to the reality that this is happening. I still make jokes but it’s getting horrifyingly real.
Yesterday’s tests came in two parts. The first part was standing on a small moving platform trying to keep good upright posture. They would move the “scenery” around me around or the platform or both. This was done multiple times with my eyes both open and shut. Made me very nauseous. The second part involved sitting in a chair following light dots on the wall. My cats would have loved it. It made my head hurt. There was one part with light and dark stripes alternating that made me want to cry. I just couldn’t focus on the colors, my eyes kept seeing the wall behind instead. The technician had me keep trying and said unfocusing my eyes was a coping mechanism.
Anyway, the result was that I have measurable symptoms that match the scans. They want me to start physical therapy before the surgery to start correcting my incorrect assumptions about where my center of gravity is. I use my eyes almost entirely to maintain my relative stance to the world around me. My inner ear and what gravity tells it is ignored (because it’s wrong).
The other result was my head hurts horribly and every time I move it feels like my brain is sloshing inside my skull. I did make it to work though it was hard to focus. I find the pain easier to deal with now that I can pinpoint it better.
I just sent out the email and made a Facebook announcement. One more checkbox on the “this is really happening” list. It makes me grumpy. Or my headache makes me grumpy. Either way I think I’m done with the internet for tonight. Goodnight.
Yesterday I scheduled brain surgery for myself. It sounds so weird. You’d think that if I was going to have brain surgery I wouldn’t be able to schedule it for myself, I must be a vegetable or drooling at the very least. Instead I’m just in pain and sick.
I’m still trying to figure out how to tell everyone. Some people know but it’s been very scattered based on who I bump into or not.
Last year I had a different brain surgery for a different problem. Last year I wrote tons of update emails and kept everyone in the loop. I was delirious and on pain killers and not working.
Now I have a problem that pain killers don’t really help. Sure I get loopy but the pain is still maddeningly there. (I wonder if the last name Mattingly is a shortening of Maddeningly.) I am working. I miss a lot of days but I still can work on good days.
Last year I had a Dural Arteriovenous Malformation. Now it’s my Superior Canal Dehiscence. Spellcheck hates my issues.
Last year the surgeon threaded a tube into my femoral artery, up through my heart and jugular to the arteries in my head and embolized two of the way too many arteries I have up there. In December a different surgeon is going to drill through my skull collecting bits along the way then use those bits to plug the hole in my superior semicircular canal (part of the inner ear).
I’m obsessed with the inner ear right now. I’ve been designing T-shirts, flasks and buttons that show the inner ear and try to express what that hole looks like. I haven’t finished descriptions or figuring out how much I want to try to make off each T-shirt but I’ve got a neat little Cafe Press store front to maybe sell my wares.
Right now I’m in bed trying to lay very still. I had some testing done on my balance this morning and I feel like throwing up. I’ll wax poetic about what it’s like to have a Superior Canal Dehiscence plenty later. Right now let’s just say that I am ridiculously unable to remain vertical with my eyes closed.