Be prepared for the most boring edition of This & That ever. There is literally nothing going on right now, but it needs to be that way. So you’ll have to settle with my thoughts on good books and lip gloss 😉
- Cookies have taken over our house! On Sunday, I bought 5 boxes of Girl Scout cookies from a sweet little punkin that showed up at my front door. I had a $20 bill, cookies were $4/box…you do the math. Then yesterday, the FedEx guy dropped over 10 lbs. of massive gourmet cookies on my front step. David’s grandma wanted to do something nice for me in light of all that is coming up, so she sent me a gazillion cookies from one of my favorite local cookie shops. So we now have over 8 dozen cookies in our house at the moment. I need to implement some sort of strategy that helps me not eat them all in 48 hours. Self-control isn’t working too well 😉
- Tarte Energy LipSurgence is my new obsession. So much fun! The shade changes depending on the ph level of your skin that day. So far, I’ve had it be everything from a nude blush color to cotton candy pink. One swipe is usually enough for me to get sufficient color, but if you apply more the color becomes richer. It’s very sheer and almost acts as a stain, so it’s great to use with balm or gloss on top. I originally bought it for my sister for her birthday, but then I decided I needed some too.
- I have an elopement ceremony in Rocky Mountain National Park this weekend. I figured David and I could head up there and maybe stay a night or two in Estes Park. And then I looked into hotels. Apparently Valentine’s Day + President’s Day=really expensive hotels that are almost sold out. So instead of spending $350/night, we’ve decided to camp in the Park. I’ve never camped in the winter before. It could be really fun…or really miserable. I’ll report back on the outcome!
- Since it’s my off-season, I’ve had a lot of downtime. It’s been lovely! My days have been full of taking walks, coffee with friends, trying new recipes and reading. I discovered an author that I really enjoy and I’ve checked out just about every book of hers from the library. If you like murder mysteries that aren’t necessarily fast-paced or scary, Louise Penny may be for you! She writes about a quaint little town in Canada that happens to have a little problem with people showing up dead. I like that she spends just as much time writing about the beautiful scenery and what type of cheese was served with dinner at the local bistro as she does about the clues and crime.
- I had a pretty good balance week last week, except for a few minor setbacks. I even managed to go for a long hike on Tuesday. It was almost 70 degrees out and I couldn’t not take advantage of that! I made a deal with myself that at the first tiny hint of any issues, I was going to turn around. But I managed 8 miles without any balance problems at all. Hooray! God is so gracious to allow me to enjoy this still.
I thought I’d do a little SCDS FAQ (that’s a lot of acronyms haha!) since I have been getting lots of interesting questions about surgery and what exactly this crazy syndrome syndrome is!
- What exactly is SCDS and how do they fix it? Basically you have a series of balance canals made of bone that act as barriers between your inner ear and brain. One of my balance canals, the Superior Semicircular Canal, has broken. In order to fix it, they have to do a bone grafting surgery. Essentially they make an incision above your ear into your skull. For about 30-60 minutes they lift up your brain so they can visualize the broken canal. Using some bone from your skull, they craft a “replacement part” and then permanently adhere it in place. The brain goes back into place, a titanium plate covers the hole in your skull, you’re stitched up. The balance canal is technically never “fixed,” it’s just covered up by the bone graft, so it is essentially rendered useless, which is better than having it broken.
- What are your symptoms? Primarily bizarro auditory and vestibular issues….I can hear my heartbeat, the muscles and cartilage in my neck, blinking and my voice echos in my head when I talk. My ear also feels full, like when you have an ear infection. Several times a day I get thrown into momentary vertigo where everything is just…off. So far, I’ve had several instances where the whole room was spinning. Usually I just feel off kilter, especially if I move my head or eyes too quickly.
- How did the bone break? To be honest, doctors really aren’t sure yet. There is some evidence that it is congenital. There is also some evidence that head trauma can be the culprit. I’ve had some concussions, so it may be a contributing factor. Or maybe it’s both!
- What happens if you don’t have surgery? I get this question a lot from people hoping that maybe I can avoid having to go through surgery. Unfortunately, SCDS is degenerative and usually just gets worse over time as the bone begins to wear away. My momentary vertigo would likely turn into constant 24/7 dizziness. I could definitely deal with all the weird auditory stuff for the rest of my life (although it wouldn’t be fun) but the dizziness is one thing I couldn’t handle. For some patients, it progresses rapidly and just a few months down the road they are debilitated by dizziness. For others, it can take years to get to that point. Since my initial diagnosis in September, I’ve noticed a steady decline in how I feel. I would guess a year from now I’d be a walking disaster. I’m not taking any chances, hence having surgery now!
- -What is recovery time like? Immediate recovery is about 6 weeks where the brain swelling goes down. After the initial 6 weeks, it takes most people 4-12 months before they’re back to 100%. The majority of that time is spent recovering your balance and equilibrium. The surgery plugs a balance canal so you have to retrain your brain to see the world correctly.
- I just saw you a few days ago and you seem completely normal! Are you sure you need to go through all of this craziness?! I know, I know. My pleasant demeanor can be quite convincing that I’m perfectly fine 🙂 One of the hard things about struggling with this is that it is literally all in my head. You can’t tell just by looking at me that something is wrong. It’s only in those moments where you see me stumble from balance issues or you notice I’m having a hard time focussing on our conversation due to all the noise in my head that you realize there’s a problem. I liken it to looking at someone who has Fibromyalgia. On the outside, they may look totally normal, but you know on the inside they’re struggling daily with all sorts of pain. That’s the problem with so-called “invisible diseases,” you can’t always judge a book by it’s cover!
- How long will you be in California? We’re schedule to arrive March 31st so that I can do some brain scans on April 1st. Then surgery is the next day. Most patients are in the neuroICU for 24 hours and then in recovery rooms for the next 2-5 days, it just depends on how you’re feeling. My post-op appointment isn’t until April 15th, so we’ll likely be in California until the 16th or so. During that time between hospital discharge and my post-op appointment, we will be staying in an on campus hotel for UCLA patients for part of the time. It’s only a block away from the hospital, which is nice…just in case 😉 For the rest of the time, we will be staying at a nice condo in Brentwood, just a few minutes away from UCLA!