I’m going to do a gratitude post and a ‘what the last week has been full of’ post later. Right now I just want to talk about how happy I am snuggled up at home.
I got home on Friday and have been, am on, a variety of pain medicines and vestibular suppressants. The after effects of a craniotomy do hurt more than the reasons to get a craniotomy but I know that once the craniotomy bits heal I will feel fantastic while SCDS is just something that does not heal on its own.
Today is my first day hanging out on the couch. It’s a little tiring but in a good way. Plus I was just tired of being in bed no matter how amusing the distractions have been. The kitten is curled up next to me, Mom & I are watching Chopped Season 7, I’m eating yummy mooselix (a la Isaiah who is at work) and Caro is plugging away at some work she can do in Oregon as easily as in Wisconsin. What a happy day.
Of course ordering these sentences is a little tiring so I think I’ll take a break. No need to overdo it. Just enjoy the warmth and love and light frosting of snow outside the windows.
Categories: SCDS, recovery
I’ve tried to keep very busy today. I got a haircut at Wooptido by my friend Staci:
Then I had sushi lunch with Pope, a long nap, dinner with Mom, Isaiah, Aimee & David & Bodhi. I introduced them to Blind Onion Pizza yummm. I also gave Bodhi one of my OHSU brain toys (squeezy fun) – the bright yellow one. I think I’m starting an Aunt Bee gives yellow presents trend. (Remember the yellow ukulele?)
Anyway Isaiah is doing laundry while I hang with Mom and watched Chopped. Just a relaxing evening before craniotomy.
The countdown clock used to be fun but now that it says “2 days” I don’t like it so much. Fortunately, fortunately?, my symptoms keep getting worse. Two days is awesome and two days is horrifying. Why not just give me a month from now? Two months? Why does the fork touching the plate have to be so loud? Or the click of my mouse? Or my breathing.
I often say if only the brain fog and fatigue can be fixed then I will be happy and I will. As my symptoms get worse though I have to say that I want all of them fixed. Every single symptom. Please.
In three days I check into the hospital to have my superior canal fixed. As an added bonus I get a window into my brain. Sounds so much nicer than craniotomy.
The last couple of days have been tiring. Now that I don’t have to save any energy to make it to work on weekdays I can over do it all I want.
Yesterday I had lunch, dinner and card games with Isaiah, John and Lisa. We hope to visit John and Lisa in May.
Today I went to the beauty salon and got my armpits waxed. This is probably too much information for many people but I think it’s an interesting idea on the list of things to do before surgery. Personally, I shave to avoid the way armpits smell when there’s hair there. Shaving while dizzy sounds horrifying and honestly the days between bathing are probably be longer than I’d prefer. Seemed like a good idea at the time.
The only other things to do are:
- go shopping for soft food for post surgery
- organize my room a bit more with Danica’s help
- do laundry on Tuesday:
- cleanest sheets the night before
- cleanest jammies
- cleanest loose clothes to wear to the hospital
- get my haircut
- lunch with Molly
Autophony – person’s own speech or other self-generated noises (e.g. heartbeat, eye movements, creaking joints, chewing) are heard unusually loudly in the affected ear
Dizziness/ vertigo/ chronic disequilibrium caused by the dysfunction of the superior semicircular canal
Tullio phenomenon – sound-induced vertigo, disequilibrium or dizziness, nystagmus and oscillopsia
- Pulse-synchronous oscillopsia
- Hyperacusis – the over-sensitivity to sound
- Low-frequency conductive hearing loss
A feeling of fullness in the affected ear
- Pulsatile tinnitus
I struck out the things I wrote specifically about as far as I can tell. Want to get the descriptions in before December. So…
Pulse-synchronous oscillopsia. Yep, that’s the little dot in my eye that goes ping ping ping or ponk ponk ponk except with a little dot I can see instead of a sound but what’s really the difference between dots and sounds and touches.
Hyperacusis, over sensitivity to sound. Yeah. I think I’ve complained about the sound of my typing. And anything else I hear.
Low-frequency conductive hearing loss. I often wonder if it’s my hearing that’s worse or just the amount of other things I hear that make it harder to hear what’s around me. there you have it.
Fatigue. Yeah. Yeah yeah yeah. Oh yeah.
Headache/migraine. That was what started it all. The quest to find out why my head has been hurting since May of this year.
There. All symptoms written. Sorta. Mostly.
Glory brought me a tray for eating in bed with as well as a super comfy pare of stretchy pants. Mayling brought me the most beautiful little herb garden in a pot with thyme, sage and rosemary. Then Glory and Mayling took me out to lunch at Zell’s Cafe. It was fantastic and amazing and I needed a really big nap after.
Sometimes it seems like the happier the day the bigger the resulting nap.
Mom and stepDad came over for dinner and we had wonderful food to go from Cha Cha Cha. I was super tired.
Now that I’m all full of food though I don’t feel as much like napping. I’ve already slept a lot today. So I’m super tired and head achy and awake.
Not really focussed either.
I got a beautiful necklace from Edie, my mother-in-law. And a wreath and wild blueberry jam.
And Staci thought of me. And yesterday was wonderful with Pope and Molly and the Wilson family fantastic. Oooh and Kirsten R and her delicious devilled eggs. Did I already write thanks for that?
Not tracking well. Love and gratitude to all.
And Thanksgiving. That too. We’re just non traditionalists. Unless tradition includes Mystery Science Theater’s Turkey Day marathon. Then we’re traditionalists.
Anyway, I’m super thankful and pretty tired. Hi world.
My gratitude has been quiet lately but it’s time to call out to some really awesome people.
Thank you to Kelli for sending me coloring books and a new set of coloring pencils. I had forgotten how relaxing coloring is.
Thank you to Mom for all her understanding.
Thank you to Savannah for always being uplifting.
Thank you to Molly for being my surgery buddy.
And thank you so much to Isaiah’s Mom, Edie, for sending this card:
Life does not have to be perfect to be wonderful. -Annette Funicello
Listy makes a great pun. I’m listing like a ship and I’m listing like a person with a pen and paper.
Three days of work ahead, a holiday, some tasks and then surgery.
So what about those tasks?
- Set up Food Tidings
- Dye my hair (the Sunday before surgery)
- Do art fun
- Finish organizing room with Danica’s help
- Make a list for Danica to do the deep clean while I’m in hospital
- Organize health papers for SCDS (ambitious!)
- Make pumpkin pie (I love my own pumpkin pie)
- Try not to obsess on that brain surgery thing
I did get my movies for post-op sorted:
Yeah, the last one is blurry. So is my brain. The thing next to the Alien set is a video game, I added more video games after taking the picture.
Thank you to my fabulous coworkers especially the ones who are half way between “we can do this without you” and “what are we going to do without you?”
Thank you to new friends and old.
Thank you to my mom, husband, and just everybody in my family. I am so fortunate to have you all.
Thank you to all the medical people who are helping me move towards health.
Dizzy but thankful.