Coping Skills.

Three weeks from today, I will have walked out of my office at work for the last time for a month. That still seems crazy. I'm still trying to figure out how three weeks can seem like such a long time and such a short time...hmm...

Anyways. As I was working with one of my clients today, we were discussing the idea of coping skills when they feel anxious. I started thinking about that...obviously I've been experiencing some anxiety. How do I cope?

When I feel anxious, I feel like I don't have a lot of control. And when I feel like things are out of control, I find ways to feel like I have control. So I organize. I make lists. Spreadsheets. Tables. To-do lists. My planner looks like a rainbow threw up on it with all the color coding I do. Sometimes it borders on ridiculous.

When I went to my appointment with the neurosurgeon, I came with a full, typed page of questions for him. As I'm preparing for my pre-op appointment next week, I've started a new page of questions. I've already started thinking of what I want with me at the hospital and have a bag set aside that I'm putting stuff in. Like I said...I sometimes border on ridiculous.

I'm EXTREMELY thankful that I have a cousin that has worked/does work at the hospital that I'm going to be having the procedure done at. In my anxiety, I asked her if she knew if it would be possible to have a tour of the hospital so that, after having my body go through a trauma and being exhausted and in pain, I'm not also trying to understand my surroundings. I can go in knowing what to expect. She responded by letting me know that she would be willing, on her day off, mind you, to take me on a tour and talk to me about other things to think about. When she told me that she would do that, I was gently reminded of how blessed I am by my family and friends.

So I can be borderline ridiculous at times. Aren't we all?

30 Days...And How Do You Feel About That?

It struck me today at work...today is April 22. One month from today is my surgery. 30 days from now, at this time, I'll be in my room in the intensive care unit. I don't know how I'll be feeling, whom I'll be allowed to see, or what the next 48 hours will hold for me. But I do know one thing...30 days from now, I'll be holding firm to the belief that my life will have just changed.

I've done my best to be as strong as possible for everyone. In the coming month, that strength is going to have to increase, as I still have to share with my boys at work that I'm going to be leaving for a month. I don't know how they'll react, but I know that there is going to be challenges ahead for all of us.

I feel like I've done a decent job being strong. I'm far from perfect at it, but I feel like decent can be ok sometimes. I've only had one big break down. While that is often seen as a sign of strength, I whole-heartedly believe that there is just as much strength in the process of breaking down. In allowing your feelings to show. I try to tell that to my boys...maybe I should practice what I preach?

There's a word I've been trying to eliminate from my vocabulary lately..."should." I keep telling myself that I should be strong. I should be the rock for everyone else. I should wait until I'm alone to break down.

No.

I tell everyone I know that being their genuine self is perfect. That it's ok to be real and to have feelings and to share those feelings. Right now, my genuine self is scared. And I need to tell myself that it's ok to be scared. This is a big deal.

So how do I feel? Scared. Anxious. Sad sometimes. But richly blessed and ready for this new chapter. Maybe even ready to chow down on a corn dog because it's time for me to enjoy more at this amusement park than just the tilt-a-whirl.

What is Superior Semicircular Canal Dehiscence (SSCD)?

Let’s be honest. I had never even remotely heard of this thing before. Heck, the only part of the ear I knew about was the eardrum. When the ENT called (the one before the one at OHSU…the second time at OHSU) and said that this might be a diagnosis, obviously I went online and googled that ish. As I’m reading about all the symptoms, I’m thinking in my head, “Yep,” “Oh, that’s the technical name for that,” and “Wow, this sounds exactly like me.” Here you go, folks. SSCD in a blonde, twenty-something’s words.

Let’s break it down, shall we?

Superior Semicircular Canal: As you can see in the photo below, the semicircular canal is located in the inner ear. It is lined with cilia (tiny ear hairs…gross, right?) and filled with a fluid called endolympth. Every time the head moves, that fluid moves the cilia. The movements of the cilia are communicated to the brain, making it a motion sensor of sorts. The brain then knows how to keep the body balanced. The semicircular canal has three (main) parts: horizontal, posterior, and superior canals, each of which provides a separate sense of directional balance. The superior canal detects head rotations on the anterior-posterior axis (up and down movements of the head).

The ear. Duh.

Dehiscence: There are a number of different kinds of dehiscence in the medical world. But here’s what it means in terms of SSCD: it is a thinning or opening of the bone in the skull that covers the superior semicircular canal. In my case…the bone is missing. I’ve tried to show it in the photo below. The right side (labeled ‘normal’)…look below the ‘m’ in normal…that’s what it should look like. The left side (labeled ‘dehiscence’)…look below the first ‘e’ in dehiscence. See the big black space? That’s where the bone has eroded away. There isn’t really a clear answer as to why the bone has eroded, but it has.

Inside my head...I know, really, who wants to be there?!? 

Diagram of SSCD

About 17 years ago, a doctor by the name of Lloyd B. Minor at Johns Hopkins University was doing his doctor thing. He found that eye movements evoked by sound and pressure stimuli often align with the plane of the superior canal (sorry, no blonde terminology for that one…that’s in the works). He and his colleagues published information about the syndrome and created a surgical procedure to correct the problem and relieve the symptoms. I don’t know him personally, but I’m going to go ahead and call Dr. Minor my homeboy.

The man that changed my life...Dr. Minor

I’m still trying to gain some answers myself as to what is happening in my head (aren’t we all?), but I tried my best to give you the information I have as of now. Feel free to contribute via the comment section with any questions or any information you might have about the diagnosis!

Four Score and Seven Years Ago...Minus the Four Score Part...

I was asleep at my parent's house in January 2007. My alarm went off and I got myself out of bed. I stood up to walk out of my room and before I knew it, the room was spinning around me and I had a date with the floor that I didn't know about. Extremely confused, I tried to pull myself off the ground, but I simply could not stop the room from spinning. I called out to the person staying with me at my parent's house and they came rushing in. They attempted to help me to my feet, but I couldn't even steady myself enough to stand up. I sat on the edge of my bed, completely confused.

Once the clinic was open, I called my doctor to make an appointment. She informed me that I was experiencing vertigo. She said it happens to people sometimes, recommended rest and plenty of fluids, and sent me on my way. Later that night, I attempted to go to sleep. As soon as I tried to crawl into my bed, the room started to spin around me again. I couldn't lie down to go to sleep, so I propped myself up in a chair with a footrest and, for the next few months, that's how I slept.

After a while, the vertigo continued to get the best of me. So I went back to my doctor, and she recommended that I go to an ENT (ear, nose throat doctor) in the area. I made an appointment with him. After an examination, he informed me that he believed that I had a condition called Benign Paroxysmal Positional Vertigo (BPPV). This condition brings on vertigo when the head is placed in certain positions. For me, it was the right side. He gave me some exercises to do at home to correct the problem and sent me home. 

More time passed and the exercises weren't helping. I made another appointment with the ENT. He referred me to another ENT in the Portland area. This ENT decided that he wanted to do some vestibular testing. For two hours, I was spun around, had water rushed into my ear, and did my best not to lose my lunch. All of that testing again pointed to BPPV. The Portland ENT recommended that I see a highly specialized ENT at OHSU. I desperately hoped that, after two years, he could give me some answers. 

For the fourth time, I told my story of spinning. More testing. More medical imaging. More vestibular therapy. More exercises to try at home. Nothing was working. I was so done with all of this. The ENT suggested a surgical correction. At this point, I had been spinning for almost two and a half years and I was desperate to have my life back. In May of 2009, they did some work on the inner ear on my right side, plugging a canal so that crystals in my ear, which are a part of how we balance, can't move to the wrong spot and cause vertigo. It was a day surgery and I went home with high hopes that I was finally cured.

The recovery was a little rough, but I made it through. I noticed mild improvements, convincing myself that it would get better as time marched on. It did get better, but there were still remnants of the spinning that just never seemed to go away. 

Fast forward four years...July 2013 to be exact. I was attempting to meet with clients at work, but I could not get off the tilt-a-whirl. I left early and tried anything I could to make it stop, but it just wouldn't. I made an appointment with my doctor, who referred me to an ENT. He didn't seem sure of what to do, but he gave me some motion sickness medication to tame the nausea associated with the vertigo and sent me home, telling me to call back in a month if nothing had improved. 

In that month, I was with someone who was opening a box. As they ripped the cardboard, I screamed. The sheer volume sent me into a horrendous bout of vertigo. The next day, I made another appointment with the ENT. He sent me to the best ENT my insurance could offer without an outside referral. Here we go again...

It was late fall or early winter by this point. For the seventh time, I told my story. This time...it felt different. She explained to me a two different conditions she believed I could have...Meniere's Disease or Superior Canal Dehiscence Syndrome. She ordered a specialized image of my head and more vestibular testing. 

A few weeks after all the testing had been done, the ENT called me. She had finally received everything for review and was referring me to a specialist at OHSU. He was a neuro-otologist...someone specializing in the ear-brain connection. It took three months to get in to see him, but it seemed worth the wait. 

For the eighth, and hopefully final time, I told my story. They did a thorough exam, asked me quite a few questions, and reviewed my images with me. "You have a condition called Superior Canal Dehiscence Syndrome." The correction...surgery. I was able to ask questions, he gave me the run down. I wanted to move forward. He explained to me that I would need to meet with the neurosurgeon to make it official and put in the referral.

As I was driving away from OHSU, my phone rang. It was the neurosurgeon's office. An appointment was scheduled and, two weeks and a full page of questions later, I was waiting to meet with the neurosurgeon. He explained the procedure and patiently answered all my questions. I knew that I was ready to be done. I knew that this was not the quality of life I was meant to have. So I scheduled the surgery. 

It's still about a month and a half before the surgery, so there's obviously some anxiety, but I feel surprisingly at peace. It's time for this chapter to close. It's time for the amusement park attendant to pull the lever and tell me it's finally my time to get off the tilt-a-whirl. 

Join Me On The Tilt-A-Whirl?

I'd like to open with this...I'm terrible at this blogging thing. I set one up, get on a roll for a while, then it falls off the face of the Earth. However, here's where I stand with this blog. Since I went "public" on Facebook today with the information about my diagnosis, I've received a great deal of encouragement from people. Texts, phone calls, comments...they've all come through and I'm beyond blessed. I want to make sure that everyone who has been so kind and loving on this journey so far has the opportunity to get updates. So I'm reaaaaaaaaaally going to try and make this blog work.

But this blog isn't just for you guys (no offense...much love). It's for me. It's the chance for me to get it all out there. Today, I had a bunch of people tell me that they had no idea. That I've done a great job of hiding the constant spinning. While that can be a wonderful thing when used properly, I want people to know that they can talk to me about it. That I'm happy to answer questions and share my journey. People don't realize how much something so "hidden" can really affect a person. Which leads me to my third and final point.

This blog is also for people who are going on this journey, or one very similar. After my diagnosis, I jumped online and did as much research as possible. There's a whole heap of medical journals, doctor speak, and stuff like that. But there isn't a lot on the people. The one's that live with this every day. The people that have to pretend like they can get through the day without feeling as though they're going to revisit breakfast, lunch, and dinner. The people that like things quiet and have a small heart attack with every loud noise because their vertigo flares up and all of a sudden we're doing forward rolls down a hill. This blog is for my SCDS peeps (shout out!).

We're in this together folks. Join me on my tilt-a-whirl. But I'm planning on getting off that ride soon.