Monday, July 30, 2012

Home, Sweet Home (Living With Cogan's Syndrome)

May 24th:

Sarah and I like to joke about how often I am at the hospital or other buildings for appointments and treatments. Each time we arrive at our destination, one of us will declare with sarcastic satisfaction, “Ah, home, sweet home!” Today was no different as I had not one, but two engagements to attend.

Sarah and I drove to Dr. Russo's office, ready for him to check my eyes.  When we arrived, his assistant was already behind the front desk, seemingly waiting for us. He brought us into the examination room, affirmed the types of medication I'm on for his notes, poured two different types of drops into my eyes, and then did a short examination. When he was all finished, he left the room and we waited for Dr. Russo—we waited for twenty-five minutes. Apparently, he can't do the full examination of my eyes until they are completely dilated.  

In his typical fashion, Dr. Russo walked in sporting a vest, a bow tie, and a thin grin.

“How are you doing?” he said, reaching out his hand.

“I'm doing well, thanks,” I said, reciprocating his handshake. “I'm still not hearing too well in either ear.”

Dr. Russo’s face changed to from his perpetual smile to a look of sympathy—though his faint smile could still be vaguely seen underneath his expression.

“Alright,” he said. “Put your head here.”

I inched my body forward in my chair toward the examination machine, placing my chin and forehead on their respective rests. Dr. Russo pointed at a spot on the device for me to look at and turned it on. The bright light pierced my eyes, making way for tears. I wanted to flinch—to close my eyes and not have to stare any longer—but I made myself deal with the discomfort.

I should explain that I have barely had any issues with my eyes for my entire life. I still have 20/20 vision—regardless of any irritation, sensitivity, or inability to focus that I have contracted with Cogan’s. I had minor reading glasses for a few years, but do not need them anymore. Needless to say, I am still not accustomed to all of these tests.

Dr. Russo pulled the machine away and rolled his stool back a bit.

“Your eyes look good,” he said. “Your eyes are a barometer.”

He paused as if waiting for a response.

“I'm sorry,” I shook my head in confusion.

“Your eyes,” he said, pointing to them, “…are a barometer.”

I still couldn't make out the word.

“A barometer,” he repeated.


“Barometer,” he said, doing his best to be as clear as possible with the movement of his lips.

“A barometer?” I asked.

“Yes,” his smile grew. “If they are doing well, then I know your disease is under control. I'm going to keep you on Methotrexate and Folic Acid but I want you to drop down to ten milligrams of Prednisone.”

I couldn't understand anything he was saying. The whole incident with the word “barometer” really threw me off. Dr. Russo is great, but considering I can't ever understand him, you'd think he would use a simpler word; perhaps the word “gauge” or “index.” I just had Sarah fill me in after. I don't like to do that anymore—I've been making a conscious effort to comprehend what's being said to me—but my conversations with Dr. Russo will most likely be an exception.

As Sarah and I left my appointment and while in the car, she brought up the amusing dialogue.

“Your eyes are a barometer,” she said flatly, without moving her lips.

I tend to have a decent time hearing in the car—probably because it is an enclosed space. I heard Sarah loud and clear.

“A barometer,” I repeated, smiling slightly and trying to mimic Dr. Russo's facial expressions.

Sarah had to work at the office today, so we decided (after some pleading and assuring on my part) that she would drive to work and I would take the car to my next appointment. I told her that I would park the car in the parking lot at her job, sleep until my eyes weren't dilated anymore, and then drive to physical therapy. I explained that since physical therapy really wears me out, that when I finished I could walk down the road with the laptop to a coffee shop and write for the blog that I had recently started. Sarah questioned if this was a good idea, but in the end trusted that I would be okay.

A couple of hours later, I made it to my appointment. Rose brought me into the back.

“How are you doing?” she asked.

“I'm doing well,” I said. “I've been driving a little bit, mostly short distances”

“Oh, that's great!”

“Yeah, it feels really good to have that freedom again. Last week, I began to add some minor weightlifting to my exercises.”

Cogan's Syndrome and all of its side effects, has forced me into a considerable loss of self-confidence. Sitting around for three months at home without doing any physical activity didn't help either. I felt disgusted with the way I looked and how I presented myself. Once I started physical therapy—and I truly began to see a noticeable difference—I decided that adding weights to my routine would be a solid idea.

I spoke with my brother-in-law, Marc, and my friend, Doug, about which exercises to do. They gave me some good tips, including various sit-ups. I took their advice last week and have been working out every day since. Three exercises one day, and three the next. I am already starting to feel more comfortable with my body and am starting to carry myself in a more assured manner.

“Good,” she smiled.

She then had me do the regular exercises that I have been working on: walking in a straight line with one foot in front of the other, balancing on various objects with my feet close together and my eyes closed. Next, she added two new workouts to my repertoire.

Rose set up five orange cones in multiple places around the room. She pointed to a cone, I ran to it, and I attempted to catch a medicine ball that she threw to me. This went on for a few minutes—I felt like I was training for the NFL. I didn’t work out like this before I got vertigo! I thought.

For the last ten minutes, Rose had me use the treadmill. She placed a sticky-note on the window in front of me with the word "center", one on the window to the left with the word "left", and one more on the bicycle to the right with the word "right." The goal was to focus on each word that she called out while walking. After about five minutes of this, Rose bumped up the speed and I had to jog for five minutes while doing the same thing.

I got off of the treadmill—winded and feeling like death—and Rose asked me how I was feeling.

“Well, I feel very dizzy. I didn't run even before I got sick, so that was exhausting!” I said.

She told me I was doing a really good job and that she could tell the physical therapy was really working for me.

I’ve noticed that as well. I still get tired and dizzy after being active, but I am at the point where, even though I am aware of being off-balance, I can decide not to pay attention to it. I have been able to move around much better and even drive! Physical therapy is definitely working.

For the remainder of the day—before picking Sarah up from work—I went to a local cafĂ© and wrote a blog post. Writing has been quite a therapeutic experience for me. It has allowed me to do something I love while expressing myself in how I have been dealing with my disease personally, socially and physically. My hope is also that this blog will raise awareness about Cogan’s Syndrome, so that others can be diagnosed as early as possible. Thanks for reading and being an important part of my story!

1 comment:

  1. I love reading your blog, Max. Thank you for writing it.