Thursday, May 31, 2012

Conversations (Living With Cogan's Syndrome)


A truly strenuous component of this whole ordeal is trying to have a normal conversation—albeit, normal is something I'll never have again. One on one talks are typically the most successful for me as I am able to focus on the other individual's lips and listen intently to the sound of their voice. For instance, when Sarah is driving and I am in the passenger seat of our car, our exchange usually goes something like this:

“Do you want to get a coffee at Dunkin' Donuts?” she asks.

“I'm sorry, what?” I ask, shaking my head, leaning in close to her face, and squinting as I try to target her lips with my eyes.

“Do you want to get a coffee at Dunkin' Donuts?” she repeats, this time speaking in a slow, low tone while turning her face toward me so that her lips are in view.

“Do I want to get a coffee at Dunkin' Donuts?”

“Yes,” she says.”

“Yes.”

And that is what I would call an easy discourse. Discussions grow increasingly arduous when in larger rooms or when others are involved.

I have come to loathe groups of a considerable size. In church, I can't hear what anyone is saying. The sound of multiple conversations within the sanctuary flush out the already feeble noise of a single dialogue I might be having. When going out to dinner, I have Sarah order my meal and talk to the server because I am embarrassed about my hearing problems and don't want to spend the time explaining my issues to someone I don't know.

Spending time with Sarah's family used to be something I truly looked forward to. Delving into a feast—as most get-togethers include around ten people—drinking beer with guys, sitting outside by the fire and sharing stories and laughter were all aspects of the family congregation that I longed for; unfortunately, much of this has changed. The conversations ensue and the joyfulness of being together envelopes whichever home we are gathered in, but I feel left out. I don't laugh anymore and I'm not as outgoing as I used to be, even amongst those whom I am closest to. Most of the time I'll try to stay involved, fake a smile and then leave the room to go read, drowning my disappointment in fantastical worlds.

Reading has become a habit of mine. I loved to read before all this began, but now that I have the time—and it excuses me from having to talk too much or strain myself in the laborious act of trying to hear—it is practically all I do. I read when I wake up and only take breaks to eat, go to the bathroom, talk to Sarah, and sleep. It is probably becoming an addiction, but at this point, I don't care. I wish I could talk to others without feeling self-conscious or shamed, but I can't; it's too hard. I don't want to think about my issues anymore so I've allowed fictional lives to take over my own.  

Tuesday, May 29, 2012

Diagnosed (Living With Cogan's Syndrome)


March 19th:

Today was my first appointment with the eye disease specialist, Dr. Russo. Now that I’m home, thinking back on the day, I feel exhausted and I’m doing my best to recuperate; however, I am also relieved.

Our road to discovery began as Dr. Russo’s assistant guided us into the exam room and we were seated. He was an older fellow—very friendly, but not too computer savvy—who was searching the keyboard for the correct letters before typing at an excruciatingly slow pace with only two fingers. Sarah and I smiled at each other, holding back our laughter. About fifteen minutes later, when he had finished asking us questions and entering the responses into a medical document, he performed a slit lamp examination on my eyes. When he was finished, he had me tilt my head back and released two different drops into my eyes.

“Max, have you been tested for…”

“Can you repeat that? I missed the last part,” I said.

He sat very close, looked me straight in the eyes and asked again.

“Have you been tested for an autoimmune disease or for Lyme Disease?”

“No, I haven’t,” I responded.

“Dr. Russo may want to test you,” he said. “The eye drops will take a few minutes to kick in, and then he’ll be in to see you. It was nice to meet you.” He shook my hand and then Sarah’s and walked out the door.
I looked over at Sarah and raised my eye brows.

“Well, looks like we’re on to something,” I said.

“Yeah,” she spoke with enthusiasm.

We waited for about twenty minutes, making silly faces at each other—what seems to have become a ritual at my appointments—until Dr. Russo glided in. I need to paint a picture of this man before moving on because that is exactly what it was like: a picture—Dr. Russo looked like a caricature. In walks this tall, thin man in his late thirties, holding a manila folder. He was wearing an open laboratory coat and underneath, he donned a white button-up shirt with a maroon vest. To top it off, he wore a large, maroon bowtie. He walked towards me with a perpetual smile—that lasted the entire appointment—staring straight into my eyes, arm extended, perfectly straight.

“I’m Dr. Russo,” he said, shaking my hand.

“Hi, I’m Max. It’s nice to meet you,” I answered, unable to keep my eyes off of his bowtie.

“It’s nice to meet you too,” he said, slowly turning around to go shake Sarah’s hand.

As he turned to place the folder on a table, I waved Sarah down, pointed to my neck and mouthed, “bowties are cool.”  She nodded in excitement, immediately understanding the reference to one of our favorite television shows, Doctor Who. There was a glimmer in her eye, and I wondered if she was thinking the same thing I was: If “The Doctor” were real, this guy would be totally believable as one of his incarnations!

“Tell me what happened, Max,” Dr. Russo spoke, but I couldn’t understand one word he said. He barely moved his mouth up and down from his permanent slight grin.

I shook my head, “I’m sorry?”

He repeated his question and gestured to me with his arm, giving me the floor.

“I woke up sick on Valentine’s Day and within a week I was beginning to lose hearing in my right ear,” I said. “My doctor couldn’t figure it out, she thought it was probably an ear infection but referred me to an ENT, who thought the same thing. About two weeks later, I woke up sick again and began to lose hearing in my left ear.”

Dr. Russo shook his head and in what seemed to be an unexplainable phenomenon, his smile turned into a frown without any real motion at all and somehow still vaguely resembled a grin.

“I went back to the ENT and then to another ENT who gave me a Prednisone injection in my right ear. He then referred me to Dr. Mazen, who referred me to you.”

“Wow,” he nodded, his smile returned. “Let me take a look at your eyes.”

He had me lean forward and used the same slit lamp machine that his assistant had used; only this time he turned on the most unnatural bright lights and shined them in my eyes. It was almost unbearable as my eyes began to water and ache. When he was finished, Dr. Russo pushed the machine away, leaned back in his chair, pointed at me and said, “You have Cogan’s Syndrome.” He paused, giving me a moment to ask him a question. So I did.

“Can you repeat that? I’m sorry I didn’t hear you.”

“You have Cogan’s Syndrome,” he said, this time spelling it out for me. I still didn’t understand, but I knew that I had finally been diagnosed. As he continued, he spoke in short, choppy sentences with pauses in between each one—not enough of a pause, however, for me to speak. “It’s an autoimmune disease. Very rare.  It affects your eyes; your hearing; your balance,” he swayed back and forth in demonstration.

“Wow. Okay, then. So that’s that,” I said.

Dr. Russo introduced us to another assistant, Hope, as he began to explain all of the medication I would need to be on and what sort of treatment would be necessary. Hope scribbled down all of the information for us.

“It’s treatable,” he said, his smile growing, obviously relaying an important message.

“I’m sorry?”

“It’s treatable.”

I shook my head, not comprehending.

“Treatable,” he repeated again.

“Oh. Treatable,” I nodded. Thank God.

“You’ll need to do a Remicade treatment here at the hospital. Once a month. For two years. It’s a long process. You’ll start with a pre-treatment this week: you’ll need to go across the street where the infusions take place.  You’ll start with a steroid directly injected into your bloodstream for three consecutive days.  I’m also going to put you on Methotrexate. You’ll take it once a week. I’m going to prescribe you more Prednisone. You’ll take it daily,” he continued on with his fragmented speech through a plastered on smile but I lost track somewhere at the beginning.

Dr. Russo then pointed at me and for the first time I heard him clearly, "You are going to get your life back." That sure felt good to hear.

His assistant gave Sarah the written copy explaining everything I had missed. Sarah spoke and motioned to the paper, asking questions until she seemed satisfied she had a grasp on the correct course of action. The first two items on the list were to get an X-Ray of my chest and have blood work done right away. It was unlikely, but I gathered from the discussion that there was a chance that this disease could impact my heart. My blood would now need to be tested every two weeks as Methotrexate can affect the liver.

Phew. We spent twenty minutes in Dr. Russo’s third assistant’s office after that. Trudy’s presence is infectiously enthusiastic; one can’t help but feel a little bit happier when one is sharing a room with her. She spoke with Sarah for several minutes, got on the phone and made appointments for us, faxed documents to our primary care doctor, and printed out information we would need.

We took the elevator to another floor to get my chest x-ray and blood work done.  We decided it was better to do it then than to wait until later. In the waiting room, Sarah got my attention and started to delineate the gist of all that had happened in Dr. Russo’s office.

“Honey, I’m not sure what you could or couldn’t hear. Do you have any questions about what just happened?”

 “Can you tell me what I have?”

“Oh, you missed that?” she asked.

“Yup. He hardly moved his lips.”

“I know,” she laughed, “it was almost as if his lips were frozen in a continuous smile.”

“I know!” We couldn’t help but try and mimic the expression: moving our lips ever so slightly with the rest of our faces completely statuesque. We have done this many times since.

“Okay, you have Cogan’s Syndrome,” Sarah steered the conversation back.

“Hogan’s Syndrome?”

“No,” she laughed again, “Cogan’s. With a ‘C.’”

“Oh, Cogan’s  Syndrome,” I said, finally understanding.

Sarah relayed the explanation in its entirety, speaking slowly and annunciating her words so that I could comprehend what she was saying. She told me that Dr. Russo had indicated I should be getting at least some of my hearing back with the treatment. She went on to express her conversation with Trudy.

“Trudy is amazing. I’m sure you saw that she handled her interaction with us like we were her first and only priority. She also explained where you will be going to get your treatments,” she hesitated to make sure I was following her. “You are going to the cancer center to get your infusions. She explained that you would be in a room with patients receiving chemotherapy and that she didn’t want us to get there and be shocked by it all.”

“Wow.”

“Yeah. You are getting the steroid injections on Wednesday, Thursday and Friday, and then you will start Remicade on Monday. They moved some things around to make sure you could get in as soon as possible.”

“Busy week. How are you going to be able to fit this in with your work schedule?” At this point, I hadn’t driven in about three weeks due to my vertigo.

“We’ll figure it out,” she assured me. “How do you feel about today?”

“Really good,” I said. “We finally know what I have and that it’s treatable. It’s a bummer that it’s going to be such a long recovery process, but I am thankful that I’ve finally been diagnosed.”

“Yeah, and Dr. Russo seems really good. He immediately knew just by looking at your eyes and hearing your story. It was amazing,” she said.

“His bowtie was amazing.”

Thursday, May 24, 2012

Interlude (Living With Cogan's Syndrome)


When I lost hearing in my right ear I was shocked, but I thought things were bound to get better. A short period later, I lost hearing in my left ear—fear and confusion stepped in, replacing any semblance of understanding and hope for a speedy recovery. I was unsure of what was going on, but I didn’t have time to think of all of the important or even minute facets of my life that I would truly begin to miss.  In the midst of appointments, tests and, admittedly, my own decision to hide my feelings behind books and countless hours of reading, my mind was clouded. The one thing that I know I miss the most is music.

Sarah and I were driving in the car one day and she started to sing.

“What are you singing?” I asked. I hadn’t even realized that she had turned the radio on. All I was able to see were her moving lips.

Have your friends collect your records and then change your number…” she turned her face slightly to the right so that I could read her lips, singing the lyrics to the song and bobbing her head.

“I’m sorry, I don’t know,” I shook my head as a sadness began to take over.

Now you’re just somebody that I used to know…” she sang louder, annunciating the words and smiling.
I figured it out; but that didn’t make it any better. I stared out the passenger side window, watching the trees and the buildings pass by. In that moment, I realized that if I ever did hear music again, it would not be the same.

Most of the time I like to do my writing in our living room, sitting on the couch with the laptop comfortably rested on my crossed legs. I used to listen to music while writing. I found it put me in a certain mood, depending on the artist I would play at the time—whether it was the soothing, melodic style of Greg Laswell, or the eclectic, indie-pop sounds of The Shins—music acted as a catalyst for how the words would flow. I can’t do that anymore. I write, and I enjoy myself, but I’m missing a huge a part of what made writing fun for me.

I would turn on The Naked and Famous radio station on Pandora, allowing the fun dance music with its heavy base and electronic rhythms to amplify throughout our apartment while I cleaned. I would dust and sweep, wash dishes and put clothes away, all the while dancing around like a maniac. Sometimes—if the right song came on—I would pop and lock (especially when Sarah wasn’t watching) and attempt to breakdance.  Vertigo prevents me from doing any of this, while hearing loss limits me to clean in silence.

This past weekend, March 17th-18th, we visited my parents in New Paltz. This had been the first time we had seen them since I thought I had an ear infection. When we went to church on Sunday, I was thrilled that my hearing in my right ear had improved a bit, and I was able to listen to the sermon through a headset; however, the music was painful. For a moment, I listened to the band play, my dad on lead guitar, and all I heard was loud, piercing noise. I plugged my ears.

I miss hearing all of my favorite artists. Many albums have been released since I grew ill that I will never be able to fully grasp. The worst part of not being able to listen to music is that I can’t hear Sarah’s beautiful voice. Sometimes I can hear her sing, but when I do, it doesn’t sound like her. She sounds robotic and high-pitched. What once was a blessing for me is now an agonizing experience because I don’t believe she will ever sound the same to me again.

My life is now a melody of silence and unfamiliar noise.  If loud enough, what was once smooth and beautiful is now a screeching, piercing reality.  Music is a part of my past.

Monday, May 21, 2012

It's Always Someone Else Until It's You (Living With Cogan's Syndrome)


March 15th:

It’s not as though I thought I was invincible growing up—that I could don a cape and tights, fight crime and never get hurt. In fact, I got hurt quite a bit. I’ve had numerous broken bones and other injuries that helped me to understand my own mortality; however, I never expected to have a serious health issue that would render me debilitated—at least, I didn’t think that anything could happen to me at such a young age.

Even after experiencing the death of a friend in high school and then a close friend two years later, the idea that anything serious could ever happen to me was pushed to the far reaches of my mind. I’m sure that whatever is going on inside of me is not fatal, but it doesn’t change the fact that it’s hard to deal with. I’m not having an easy time coping with this. I tell everyone all of the time that God is good and He is getting me through this—and I know that that is true—but I don’t feel it every day. And then there’s Sarah. She’s been amazing throughout the entirety of my
illness; but I’m sure that she is struggling just as I am; unsure of when to tell someone the truth: this all sucks; it’s discouraging; it’s difficult.

It’s no fun having to see a doctor practically every day. It’s no fun being the subject of test after test. None of it is fun. This is my new life, though. Today was no different.

My first appointment was an MRI. I had never had one before, but I had imagined what it would be like based on what I have seen in movies and television. I was right for the most part, although I didn’t realize that it would be so loud. I guess the good thing about not being able to hear anything is that it wasn’t too loud for me—granted, I had head phones on to block out most of the noise, so who really knows?

As I lay back, and the bed began to move deep into the cylindrical machine, I thought about what the lady issuing the test had said to me, “Remain as still as possible. This will take about 45 minutes,” and my mind shifted all over the place. How the heck am I supposed to not move for 45 minutes? Maybe I’ll fall asleep. What if I have to go to the bathroom—I did drink a lot of water before. What if I have to scratch my nose, or my leg? I won’t be able to reach my leg, anyway. I wonder if whatever machine she is looking at to process my results, has the capability to read my thoughts? Can she read my thoughts? Don’t think. Don’t think. Don’t think of anything stupid. Shut up, Max. Go to sleep.

When the bed began to move out, I woke up. Thank you, God, that that is over. Wait, what if she read my thoughts while I was asleep? 

I met Sarah in the hallway and she hooked arms with me, helping me outside.

“How did it go?” she asked.

“It was fine,” I said. “I fell asleep through most of it. She had me wear a set of headphones to block out the noise of the machine.”

“Yeah, I could hear it down the hall!”

“Wow, it was that loud, huh?”

“Yeah. So, how do you feel?” she asked and placed her hand in mine as we walked to the car.

“To be honest, kind of nervous,” I said, opening the passenger side door to our car and getting in. “I mean, I’m sure the results will come back negative, but even though it’s a slim chance, it’s still a chance, you know?”

“Yeah, I know. I feel the same way. I have faith that everything will be fine, though.”

I sat still, waiting for the right words to say. She is so strong, I thought. I don’t know if I could do any of this without her.

“Me too. I love you,” I looked at her and smiled.

“I love you too, Max.”

“Well, ready for my next appointment?”

We met with Dr. Mazen after a series of hearing tests with his audiologist. He is a thin, bald man in his forties with bushy eyebrows. He shook my hand and then Sarah’s and like the plethora of doctors that I had seen already, he had me explain what happened.

“Wow, I’m sorry you have to go through this,” he said. “I’m going to try something. I’m going to place my hands on either side of your head and I’m going to twist it from side to side. I want you to try and focus on my nose with your eyes.”

“I’m sorry. Can you say that again?” asked.

He looked me directly in the eyes, explained again, this time using hand motions to give me a clear picture.

“Okay.” I said.

He shook my head fast. I couldn’t focus on his nose at all.

“Did you notice that?” he asked with full annunciation.

“Notice what?” I asked.

“Your eyes were all over the place.”

“I’m sorry.” I shook my head, not understanding what he said and still dizzy from my head being passed about between two hands like a basketball. He repeated himself.

“Yes. That, I did notice.” I glanced over at Sarah and she was smiling.

“Are you still on Prednisone?”

“Yes,” I said.

“Good. Well, I have to tell you. Your balance will never be the same again,” he said. “I want you to do some physical therapy. It will really help you learn to adjust to your balance issue. You’ll learn to refocus and you’ll get used to walking around on your own again without any help.”

I nodded, shifting my gaze to Sarah who was taking it all in. Dr. Mazen continued, “As far as your hearing goes, I want you to make another appointment with me for two weeks from now, so that we can see if you are a candidate for the cochlear implant.”

I shook my head, letting him know that I wasn’t fully able to grasp what he had just said. Once he repeated it and I nodded in agreement he continued on.

“I also want you to set up an appointment with Dr. Russo. He’s an eye disease specialist, and there is a chance he will be able to diagnose you. He’ll probably want to have you get some blood work done as well.”

I couldn’t understand everything he was saying, so I just nodded and resigned myself to the idea of asking Sarah after. We thanked him, and left.

On our way home, we talked about the situation.

“Busy day, huh?” Sarah said.

“Tell me about it. I just want to go home, get in my pajamas and sleep.”

“What do you think of Dr. Mazen?”

“He seemed really nice,” I said.” I liked that he was looking at me when he was speaking and would repeat himself without hesitation if I needed him to.

“Yeah, I really like him. It seems like we are finally getting to see some great doctors.” She said as she drove onto the highway.

“Yeah, and I love that they keep referring us to other doctors—you know, that they are all working together. It’s reassuring.”

“Absolutely. How do you feel about everything he said?”

I paused. “Good, I guess. I mean, it was a small step forward, and that’s good I suppose. I just wish were easier. We didn’t really learn anything new today. Just more uncertainty.”

“I know. Hopefully Dr. Russo will be able to diagnose you.”

“Yeah, hopefully.” God, I hope so.

Thursday, May 17, 2012

Blessings (Living With Cogan's Syndrome)

(Names of family members, now and forever, will remain as is)


March 14th:

 “So, you have another appointment today at Dr. Feldman’s office. I took the day off for it,” Sarah said.

“Yeah,” I responded, “I was thinking that—considering it could be a long visit—you should go do something for yourself. It’s going to be a nice day out, maybe you could go take a walk at the outdoor mall, and write in your journal a bit.”

“That actually sounds like a great idea! Are you sure you don’t want me to come with you?”

“No, I’ll be fine. You’ll just be sitting in the waiting room for a long time anyway; you might as well do something enjoyable and relaxing.”

That is exactly what Sarah did. She may have also bought a shirt or two as well, but I couldn’t blame her. She had been through a lot these past couple of months and deserved something special. Besides, it didn’t hurt that the shirt looked really good on her.

I met solely with Kelly today who administered various tests to determine the severity of my balance issues as well as some more hearing tests. She and her assistant guided me slowly—taking into account my dizziness—into an examination room. They sat me in a chair and Kelly spoke.

“This is my assistant, Brad. He’ll be giving you some instructions today as well. I’ll be right back.”

“Okay,” I said.

“Hi, Max. I’m Brad,” he said, holding out his hand for me to shake.

“Hi, Brad,” I said. “So, are you going to make me hop up and down on one leg?”

“No,” Brad laughed, “we’re just going to do some simple tests with you sitting down.”

Kelly returned and came over to me.

“Okay, Max, I’m going to explain the first test.”

The tests took about an hour altogether. First they had me stare at a thin screen about four feet long that hung on the wall. A red dot appeared and bounced from spot to spot on the screen; or sometimes it slid across the screen in slow motion; or sometimes at a rapid pace. I was supposed to follow the dot with my eyes only, keeping my head completely still. This part wasn’t too bad, but I could tell that my eyes were all over the place. I was unable to focus on the moving object.

For the next examination, they made the chair recline all the way back so that it was as flat as a bed, though I was still sitting up. They held onto me and then in one swift movement, pulled the upper half of my body all the way back and turned my head to the left so that it was now touching the pillow they had placed at the head of the bead. When my head hit the pillow, I was supposed to stare at a specific spot on the wall. Kelly and Brad repeated this test a few times until it was time to turn my head to the right side.

The final balance test consisted of me laying down with my body to the right and then to the left.  At opposite times they blew warm or cold air into both of my ears and had me go through the alphabet using girl names, or boy names, or cities and states. This, surprisingly, was the most difficult test. By the end of it I was hardly able to stand. It took me a few minutes and two cups of water to regain some focus and move on to the hearing tests—which were the same ones that had been administered a couple of days ago.

Sarah picked me up a couple of hours after she had dropped me off and we got some lunch. While eating a delicious burrito, my brother, Gideon, called. This was actually the first time I had spoken with him since all of my problems began. He wanted to see how I was doing and how Sarah was doing. He asked about my tests and that we keep him updated. Gideon told me that he admires how well I have been handling everything and that he is really proud of me. Hearing that—from my older brother—made my day. It truly was great to hear from him, and to know that he and his wife are thinking about me.

Tonight, Sarah’s sisters, Kim and Christin, along with their husbands, Lukas and Matt, came over and helped Sarah clean the apartment. With my incapacitated state and all that Sarah has had to do as of late, our apartment hadn’t been fully cleaned in months. The girls cleaned our bedroom—which was the biggest disaster of all—while the guys cleaned the kitchen, the living room and the guest room. What a kindness it was to have them give up their time and selflessly invest themselves in our well-being!

God has been so good through all of this. Sarah and I have been trusting that He has a plan for us, even though it has been hard at times not knowing what the future might bring. But we keep being reminded that He is in control. Blessings flow from His hands.

On March 12th, the day we got back from our first meeting with Dr. Feldman, there was a letter in the mail addressed to “Max and Sarah Pfeffer.” It was from by oldest brother Casey and his wife, Sarah (I know, two Sarah Pfeffers—who would have guessed?). When we got upstairs, I forgot about it initially and went to the couch to begin reading. Sarah walked over to me several minutes later with wet eyes. She grabbed the book out of my hand, placed it gently on the coffee table and replaced it with the letter. I looked at her knowing face and sensed that there was something powerful at work. The letter was a full page and was in Casey’s handwriting.  Casey and I haven’t always done the best at staying in touch since he moved to California about six years ago.  Seeing the effort he put into this despite of his busy schedule was a gift in and of itself.  The letter described how much they are praying for us and love us. They told us about the financial struggles they had had in the past, but how God has been providing for them lately and they’ve been doing really well. They felt the need to give back and had been praying for a long time about to what or whom they should give.  It was tenderly expressed that there was no doubt in their minds that the money belonged to us.

I finished reading the letter and looked at the check. My eyes widened and tears immediately fell. Not only did we not ask or expect anything at all, but it was an extremely generous gift. Sarah and I held each other—my arms around her back, her chin on my shoulder; we wouldn’t let go. We remained as one, thanking God for his provisions. I haven’t been to work in weeks, and I have no idea when I will be able to return, but this will surely help for a little while.


Wednesday, May 16, 2012

A Turning Point (Living With Cogan's Syndrome)


March 12th:

Quite a bit happened today at my appointment with Dr. Feldman. Was there any resolution? Not completely, but we are finally moving forward and we’ve actually found a doctor we trust!

Sarah held my hand as she led me into Dr. Feldman’s office. I sat down in the waiting room as she let the receptionist know that we had arrived. She sat down next to me and helped me fill out all of the paperwork.

A young woman came out to the waiting room to get me.

“Max?” she looked around.

Sarah nudged me because I couldn’t hear. We both stood up and walked over to the woman. She shook my hand and looked directly at me.

“Hi, Max. I’m Kelly, the audiologist. Follow me and we’ll do some hearing tests,” she said.

I couldn’t hear a word she said, and I wasn’t able to read her lips, but I figured she wanted me to follow her as she started walking away, so I did. Sarah and I entered a small room with another sound proof room—enclosed by a glass door and windows—inside. Sarah sat down in an empty chair and Kelly motioned for me to enter the sound proof room.

“Watch your step,” she pointed as I staggered through the glass door.

There was a chair inside that she had me sit in. She leaned forward and said, “I’m going to do a series of tests to see where your hearing is at. For the first test, I’m going to place these colored tubes in your ears. You don’t need to do anything, but you may hear some loud noises.”

“I didn’t catch all of that. You’re going to do some tests?”

“Yes,” she smiled, “but for the first one you don’t need to worry about anything.”

“Okay,” I said, still not really positive of all that she said. I watched as she placed two different colored stoppers on the ends of two long wires. Uh oh, the same test that Santa did. I hope this actually helps.

Kelly placed them in my ears and left the room, closing the door behind her. She sat down at a desk on the other side of the window and began the test. I could hear various sounds in my right ear—fairly quiet, but noticeable. I couldn’t hear a thing in my left ear.  I looked through the glass door at Sarah who was looking at me and smiling. I pulled my upper lip up over my top set of teeth so that I looked like a gopher. Her smile widened.

Kelly got up from the desk and came back in the room. She removed the wires and put them away. She then pulled a set of head phones off of a hook and placed them on my head, only not like regular headphones. One side went behind my left ear, at the back of my head, and the other side in front of my right ear, in the front of my head. Then she handed me something that looked like a joystick with a large button on top.

“Okay, for the next test whenever you hear a beep, press the button. When I’m all finished, I’ll come back in and switch the headset around.”

“Press the button when I hear something?” I asked, unsure if I heard her correctly.

“Yes. When you hear a beep.”

“A beep?”

“Yes.”

“Okay.”

She left the room and closed the door. I began hearing faint beeps in my right ear just a moment after she sat down. A few minutes later she returned and switched the headset. I spent a few minutes in the room, listening as carefully as possible for any beeps, but I heard nothing.

The door opened and Kelly came over and took the headset off and hung it on the wall.

“One more test.” I raised one finger as a way of asking “one?” and furrowed my brow in response.

“Yes. I’m going to read some words to you. I want you to repeat them back to me.”

“I’m going to repeat words back to you?”

“Yes.”

She placed a different set of headphones on me and went to her desk. She placed a paper over her mouth so I couldn’t read her lips and began to speak. I was able to repeat back to her roughly half of what she was saying. My face was getting hot as the frustration grew. Come on, Max, you can do this. But I couldn’t. Half of what she said sounded like muffled sound.

When Kelly was all finished she had me step out of the room and sit next to Sarah as she printed up my results.

She knelt down and showed us the sheet with my hearing test results on it. She began to speak and point to diagrams and numbers but I couldn’t catch everything she was saying or what it all meant. I was able to catch certain phrases like “really bad”, and “way below normal”, and “severe hearing loss.” I didn’t bother to have her repeat herself because I figured Sarah would fill me in later. I probably should have been more proactive and not put so much responsibility on Sarah’s shoulders—I know she was feeling overwhelmed as well—but everything was just so difficult and this was one of the first times I was speaking in a public setting with anyone since my bilateral hearing loss. I was overcome emotion. This was not easy, and it never would be easy again.

Kelly was going to give the results to Dr. Feldman who we would meet with next. We had already been at his office for over an hour and it looked like our appointment was only halfway through. We sat in the waiting room, patiently awaiting Dr. Feldman’s call. Sarah explained to me that Kelly believed that I do not have an ear infection and whatever the issue is lies much deeper because of my severe to profound hearing loss. Well, looks like I won’t be on any antibiotics anymore.

A little while later, Dr. Feldman’s assistant called us in. She noticed that I was having trouble walking straight, so she held out her arm and I wrapped mine around hers. She guided me into a medical room and had me sit on a reclining chair. Sarah sat across from me. She told us that Dr. Feldman would be in shortly to see us. While we waited, Sarah and I made faces at each other, trying to make one another laugh. It worked. We‘re both great at making ugly faces.

Dr. Feldman entered the room. Immediately, I thought he looked so familiar but I couldn’t figure out why. He came over and shook my hand, looked me straight in the eyes, talked very slowly and said, “I am so sorry that you have to go through this.” The concern and sincerity encompassing his face was completely genuine.

As he shook my hand, I realized who he looked like. Just before I lost hearing in my left ear, I watched an episode of Being Human—a television show about a ghost, a vampire, and a werewolf who live together as roommates—in which a man named Kirby from the 1970’s steps through a doorway from hell into the land of the living. Kirby intertwines himself into the relationships of the three main characters, befriending each one separately, while simultaneously pitting them against one another. Kirby turns out to be a serial killer from the past. It’s too bad that Dr. Feldman bears a striking resemblance to Kirby, because he turned out to be a really great guy. Now whenever I see him, I won’t be able to help but wonder…

Dr. Feldman asked me to tell him everything that had happened to me. I went through all of the details, illness by illness, doctor by doctor. When I mentioned Santa Claus and his lack of helpfulness, Kirby—I mean, Dr. Feldman shook his head in disgust. He was legitimately dumbfounded by this knowledge. Dr. Feldman was shocked that I had not received any oral steroids for the hearing loss.  He said there was severe to profound hearing loss and after reviewing my results, he called Dr. Mazen, the hearing and balance director at a nearby hospital, to consult with him.  Together they decided it would be best to administer a shot of the prednisone directly into the right ear—due to the fact that it was not as severe as my left ear. He also advised that if hearing did not return to the left ear, that there was always the option of a cochlear implant.  He talked for a while, most of which, of course, I couldn’t hear. I looked at Sarah for reassurance and she was remaining calm. Everything must be fine, I thought. He’s probably just telling her what we’ll do to move forward. She was nodding at everything he mentioned and going along with his suggestions. I figured I would do the same. I began to nod.

Dr. Feldman left and went to get his assistant. When they returned, he came over to me and said, “We are going to administer a high dosage of prednisone directly into your right ear. We’re going to lean your chair back.”  I gathered that they would be putting something in my ear. I guess I’ll find out in a moment, I thought.

The chair began to recline, and in a few seconds, I was lying back. He told me to turn onto my left side. He sat behind me and placed some sort of instrument in my ear. The shot didn’t hurt, but once the liquid began dripping through my ear, it felt oddly cold and uncomfortable. I cringed and gritted my teeth at the strange sensation. When he was finished, Dr. Feldman placed his hand on my arm and gently rubbed it. What a compassionate guy!

He told me I needed to wait for about twenty minutes before I would be able to leave.  As I lay there motionless, I began to tear up. Sarah stood near me so I could see hear. She held out her hand and grabbed mine.

“What’s wrong?” she asked me.

“I don’t know. This is just all so much.”

When I was finally able to get up, we were ushered out to the waiting room again. Sarah spoke with the Dr.
Feldman’s assistant and the receptionist.  The assistant handed her some papers with multiple appointments that had to be made.  Sarah stood with the receptionist for several minutes who called and made all the appointments for us—a balance test and an appointment with Dr. Mazen as well as an MRI.

Sarah and I are so thankful for the importance and urgency that everyone at Dr. Feldman’s office regarded my situation with; however, there was a sense of panic and anxiety as all of the professionals were frantically running around trying to do things for me as quickly as possible.

On our way home, we didn’t say much at first.  Sarah broke the silence.

“How are you feeling?” she asked me.

“I’m feeling a little better. It was kind of overwhelming,” I said.

“Yeah.” she said, “I want to tell you something. Dr. Feldman said there is a reason you are getting an MRI.
There is a chance that a tumor is causing this and they want to check for that.”  She glanced over at me but I was frozen. I stared forward out the window, without making a sound. “I want you to know, though, that they just want to rule out the worst case scenario so that they can move forward.”

“Okay. That’s kind of scary.”

“Yeah,” she said.

“You must have been freaking out when he told you, huh?”

“I was trying to stay as calm as possible. I didn’t want to scare you or upset you anymore than you already were.”

“Wow, I appreciate that. I really had no idea. Thank you, sweetie,” I said.

It looks like this is going to be a fun week.

Tuesday, May 15, 2012

Silence (Living With Cogan's Syndrome)


March 7th—9th:

Vomiting was awful; pain in both ears—pretty bad as well; however, the worst experience of this whole ordeal has to have been waking up on Wednesday morning.

I opened my eyes and looked at the clock: 7:15am. I stretched out my body and began to remove the covers. I wasn’t quite ready to get up, so I lay there, watching as Sarah was moving about the room, getting ready for work.

“Hi, baby,” I said. My whole body tensed; teeth clenched—something was wrong.

“Hi, sweetie,” she replied, not really looking directly at me as she was busy picking out an outfit.

“Sarah…” I released that one special word that means everything to me, holding back tears.

Sarah looked at me and knew something was up. She rushed over to the bed, and got in. She lay right next to me, and looked into my eyes.

 “What’s wrong, Max?”

“I can’t hear anything,” I cried, my face distorted as the tears let loose. “I can’t hear anything out of either ear. I can’t hear my own voice!” I lost it. This was the scariest moment of the past two months; quite possibly, ever. I let out what Sarah would describe as a mix between whimpering and a horrible shrieking sound. She told me it was the saddest sight she’d ever seen. What’s going on? God, why is this happening? I can’t take this anymore. Will I be deaf forever? Sarah held me tight.

“What am I gonna do? I can’t go to work. I can’t have conversations with people. What am I supposed to do?” She kissed my forehead and probably tried to calm me down with a series of soothing words, but I can’t really be sure.

I had been on some new antibiotics since my last visit with Santa. Sarah had called his office, asking about the Avelox prescription that I was on. Apparently, it was supposed to be a 10 day prescription, but I only had five pills. They sent in a new order to our local Stop and Shop pharmacy and I started taking it on the fifth of March. Well, it looks like it didn’t work. Surprise, surprise.

Once I had calmed down a bit, I assured Sarah that I would be fine at home by myself. She needed to go
into work, and I could tell she was agonizing over it.

“Don’t worry, baby,” I said, “I’ll just do some reading and writing. I’ll be fine.”

“Okay. I hate this. Call me if you need anything,” she stressed.

“How about I text you,” I smiled halfheartedly.

We embraced and she was off. I immediately turned on the computer and immersed myself in activities that would distract me from my current ailment. I wrote articles for thescifichristian.com; I read a couple hundred pages in a fantasy novel by Andy Remic; I emailed and browsed Facebook for longer than I desired. I didn’t want to think about my hearing loss. I hated that it was happening and I decided it would be better just to disregard it entirely.

By the time Sarah returned home that evening, I could hear her out of my right ear just slightly.

Yesterday, Sarah worked from home, and she called Linda to ask her about the prescription. Linda was unavailable so Sarah had to leave a message. Later in the evening, Linda finally returned Sarah’s call. She explained to Sarah that considering the fact I had been on Avelox for over 72 hours, if it was going to work, it should have already. She said that I need to get back to the ENT and having some more tests done.

“I’m not going back there,” I told Sarah when she explained this to me. “That man has done absolutely nothing for me.”

“I completely agree with you,” she said, as I stared at her lips, doing my best to read them.

“I think it’s time for a second opinion. Preferably from someone who is far from retirement age and not well past it,” Sarah laughed as I said this; I couldn’t help but crack a smile as well.

“Well, why don’t we research other ENTs in Manchester or nearby?”

And so we did. It didn’t take us long, either. Dr. Feldman was just ten minutes down the road and he had fantastic reviews online. Out of curiosity, we decided to look up some reviews on Santa Claus. His were less than stellar, and we also discovered that he had a sanction placed against him for mis-prescribing and over-prescribing medication on multiple accounts. I wish we had done our research ahead of time.

Sarah called Dr. Feldman’s office today. This ended up being somewhat of a miracle obtaining an appointment with him. The receptionist explained to Sarah that there were no available appointments for two weeks. She was put on hold, asked to hang on while the receptionist spoke in muffled conversation with someone else, put on hold again. Sarah was getting frustrated. It was in that moment that she thought that maybe they would find an opening. Sarah prayed, “God, please let there be an opening.” A moment later, the receptionist returned and said, “Due to the nature of your husband’s appointment (hearing loss), we can fit him in on Monday.” Thank you, God!  

Just three days. Please God, help me get through the weekend.

Saturday, May 12, 2012

In Health and in Sickness (Living With Cogan's Syndrome)


March 1st—4th:

“Guess what, Sarah,” I probed. It was Thursday night, March 1st, and Sarah and I were in the midst of the beginning stages of the development of our website.

“What?” she asked as she searched through the various templates we would choose from for the website layout.

“My left ear sort of hurts.”

“Stop it,” she said.

“I’m serious. I hope I don’t wake up without any hearing in my left ear,” I said half-jokingly.  “That would suck.”

“That’s not going to happen.”

The next morning I woke up at 6:30am, and rushed to the bathroom to begin a vomiting session just as I had a few short weeks ago. I still had hearing in my left ear, but the pain hadn’t subsided. I spent the majority of the morning in the bathroom, clutched to the toilet or curled up on the floor.

Sarah came to the bathroom once the festivities had ended.

“Are you okay sweetie?”

I shook my head.

“I’m going to stay home from work today,” she said with her phone in hand, already about to call her boss.

“No,” I cried, “you can’t.”

“Max, I am your wife,” she said in a stern voice. “You need me. I can take the day off. It’s no problem.”

“It’s not fair,” I said, but she was already on the phone, talking to her boss in another room. What a persistent and wonderful wife I have.

When she got off the phone, she came back to me. She put her arm around me and held me close.

“I’m going to call the ENT. He needs to look at you again,” she said.

I nodded and cried in her arms.

Sarah made another appointment with Santa Claus. It was time, yet again, to visit the North Pole. This time Sarah came with me. Old Saint Nick examined my ears for a few minutes and then sent me in for the same hearing test that the nurse had done a few days ago. When it was all finished and he looked at the results, I was sitting in a chair in the waiting room with a bucket in my hand, Sarah rubbing my back. He strolled over to us, reached out and handed me a new nose spray and a 4-day sample of Avelox.

“Here are some magic meds that should make you feel better in no time,” he grumbled, holding a smile. Did your elves make them in the factory?

He told us to make a follow-up appointment for two weeks later, which Sarah took care of for me. Before we left the office—Sarah supporting most of my weight as we walked—I let go of her and took a trip to the bathroom, ensuring that the ride home would be free from any mess.

I spent the rest of the day and night in and out of the bathroom, with Sarah guiding me back and forth.

Yesterday morning, I woke up throwing up again. Sarah had a commitment at church. She was supposed to lead music for the women’s retreat and had left before I even woke up. I somehow made my way to the couch where I attempted to watch television, but the motion just enhanced the sickness; I tried to eat but couldn’t keep anything down. By mid-morning I called Sarah in hopes that she could call the doctor for me, but I only got her voicemail. I tried again and again—no luck.

Since my first plan didn’t pan out, I had to call my primary care physician: Doctor F. He was unavailable. I left a message for him to call me as soon as possible. Please God, I prayed, I need him to call. I need him to call soon. I can’t handle this anymore. The phone rang a few minutes later but I was already in tears.

“Hello, Max. What’s wrong?” he asked.

“Did Linda tell you…about my sickness…” I groaned, “a couple of weeks ago?”

“Yes, she mentioned it to me. You woke up vomiting, couldn’t keep anything down, and lost hearing in your right ear?”

“Yeah. Well…I’ve been sick for…the past twenty-four hours. It started with pain in my left ear. I can’t keep…anything down.”

“Nothing? Have you tried Gatorade?”

“Yes. Nothing.”

“I’m going to prescribe you Cyclobenzaprine. This should help with the nausea. If it doesn’t work, you’ll need to go to the ER,” he said with urgency.

“Alright. Thank you…Doctor F.”

“You’re welcome. Feel better, Max. Goodbye.”

“Bye.” I hung up the phone and stumbled to the bathroom, the dizziness rushing to my head, trying to drag me back down—the conversation on the phone was just too much. When I finally made my way back to the couch, I texted Sarah to let her know that there would be a prescription waiting for me at Stop and Shop that she could pick it up on her way back.

When Sarah returned in the early afternoon, I looked like a mess. My face was as pale as Casper, my hair was disheveled, and my clothes smelled like something awful. Sarah helped me put on new clothes and gave me the medication. It didn’t really do the trick at first, but that evening I stopped throwing up.

By this afternoon, I’m feeling much better; however, I’m still very dizzy and my ears are still bothering me. I’ve been sick and Sarah has been so busy taking care of me, that we haven’t been able to go grocery shopping or clean our apartment in weeks. Thankfully, my mother-in-law is at our apartment now helping Sarah out with those duties and relieving some of the stress for her.

Thursday, May 10, 2012

Nothing Is Easy (Living With Cogan's Syndrome)


(For all posts, aside from my name, Sarah's, and those that whom I've been given approval, all other names will be fictional)

February 18th – 28th:

It has surely been a long week since I met with that strange doctor in New Paltz. I'm starting to really get frustrated with being sick. I feel like it will never end, and that no one has a clue as to what is wrong with me. I just want to get better. I just want to have a normal day. I keep wondering why this is all happening. I know that God has a plan, but it hasn't been easy and I haven't figured out what it is yet.

Shortly after our visit with my parents, I lost hearing in my right ear and I was not feeling any better after being on Amoxicillin for a few days. Something needed to be done. Sarah called our doctor's office and made another appointment with Linda, whom we had seen regarding my eye problems—which haven't fully recovered by the way. From what she could tell, it was an ear infection and she gave me a five day medication called Z-Pack. I was also prescribed Tylenol with Codeine for the pain that would not cease. This, I had hoped, would clear things up for me. Obviously, with the luck I've been having, my hope would not ring true.

Yesterday was February 27th. I went to back to work and it was a strenuous day to say the least. The Z-Pack had not worked. I tried to do as much as I could with the kids, but it was too difficult to gather that much energy for the tasks I was so accustomed to doing. I was dizzy, so I moved at a slow pace throughout the day, my ear was in pain and I still couldn't hear a thing out of it.

I was outside on the playground with the kids, sunglasses on to shield my sensitive eyes, making sure to point my left side to the teacher's aide, Sally, so that I could hear her if I needed to. There were other classrooms outside as well. Aware that the teacher/child ratio would be fine, I asked Sally if I could go make a call to my doctor.

“Go right ahead,” she said. Sally and the head teacher, Cindy have been so kind through all of this. Having worked with them for the past two and half years, we have developed a friendship and I know that they really care for me, almost as if they were my moms.

I went inside, stood in the hallway near one of the classrooms, and made the call. The receptionist answered, giving her name and the name of the practice.

“Hi. This is Max Pfeffer. I'd like to speak with Linda, if it is at all possible.”

“One moment, please,” she said as she put me on hold.

As I was waiting for Linda to answer, I looked out the large glass windows at the playground. I watched as the children ran along the play scape, chasing after one another. I wished that I could have been out there with them, being the one to chase them around the playground, growling at them like some sort of zombie with my arms outstretched. That's what I always do. I love watching their smiling faces as they scream and run away from me in pure excitement. Why can't I do that?Why can't I be that fun teacher right now?

Hi, Max. What's up?” Linda asked.

Hi, Linda. Well, the Z-Pack didn't work. I still have all of my symptoms. Is there anything else I can try?” I asked in desperation.

Hmm,” she thought for a moment, “This is strange. I don't think it is swimmer's ear, but I'm going to prescribe you ear drops just in case. In the meantime, I think you should make an appointment with an ear, nose, and throat doctor.”

Alright, thank you.”

You're welcome. Bye.”

Bye,” I said and hung up.

I breathed in deep and let out a large sigh of frustration. Nothing is easy, I thought.

This morning I had an appointment with an ear, nose, and throat doctor. I was praying to God that this specialist would be able to figure out what was wrong with me. The nurse called me into a patient room and took my weight and height down. She then told me that the doctor would be in shortly. A few minutes later, a large, older man with rosy red cheeks (whom Sarah told me later was actually 77 years old) walked into the room and closed the door.

Hi,” I said with a smile; he reminded me a bit of Santa Claus, with his jolly demeanor. He responded with a sort of guttural grunt or laugh—I still haven't quite figured it out—and a slight smirk.

What happened?” Santa asked nonchalantly, in an almost inaudible tone—not only because I couldn't hear out of my right ear, but because he had a very low, raspy voice.

I explained everything to him. From the eye issues and the Prednisone drops, to the ear issues and all the medication I had taken up to that point. As I explained he nodded and continued to grunt. He sat down on a stool next to the chair I was sitting in and looked in my ears.

More grunts.

Follow me,” Santa said when he was finished and he stood up and walked out the door.

I followed him into another room where he had me sit in a chair across from a computer screen. He left without a word—probably to bring gifts to other good boys and girls—and the nurse who had brought me in entered.

I'm going to do Tympanometry hearing test,” she said.

Okay,” I shrugged. Whatever the heck that is.

She placed colored caps on the ends of two long wires that were connected to a machine that almost looked like a typewriter, without the keys. She then put one wire into my left ear and the other wire into my right. I heard some beeping noises, mostly in my left ear as she turned the machine on. When it was finished, she took out the wires from my ears, brought the results of the test up on the computer screen and printed it out. She then had me follow her into a waiting room.

About ten minutes later, Santa came back, carefree as ever, with the test results and said that he wanted me follow him into another room. I followed along like an obedient little elf, until we entered a room with a large microscope. He had me sit in a leather chair and reclined it all the way back so that I was laying down. He took a closer look into my ears with the microscope and then said, “It looks like you still have some redness in there. It's going to have to get better on its own.” WHAT!?!?!

The only gift Santa gave me today was a nose spray called Nasonex, in order to, as he put it, “clear up some of that pressure.”

Okay. Ear drops and Nasonex. These better work.


Monday, May 7, 2012

Pain, Pain, Go Away (Living With Cogan's Syndrome)


February 17th, 2012:

I love visiting New Paltz, New York. The town in which I spent 23 years of my life holds a very special place in my heart. Perhaps it's that my parents still live there, and I get to see them when visiting; maybe it's the joy of spending time with my friends; or it could be the fact that it is a fun, artsy college town filled with locally-owned shops and a beautiful mountain range overlooking the heart of Main Street—that's a pretty fine aspect. There are a plethora of reasons why I enjoy going back to New Paltz, and that is just what Sarah and I did today. Unfortunately, it hasn't been the most pleasant trip thus far.

My right ear has really been bothering me the past few days, but we had planned this weekend trip and I didn't want to miss it. This was probably not the best idea, because for the first couple of hours at my parent's house, all I wanted to do was lay on the couch, holding my ear, as if the soft touch of my right hand would soothe the pain. Uggghhh, I thought, and I thought it some more.

My parents told me that I should go to the walk-in clinic to get my ear checked out. My mother told me that the doctor we used when I was a child opened the clinic with his son and that they are top-notch professionals.

“If I can start taking something to get rid of the pain, I will be happy,” I told my family, still curled up on the couch.

Sarah drove me to the clinic, helped me inside—the dizziness was still in effect—and filled out the paperwork for me. The doctor—not a father or a son, but rather a middle-aged woman with glasses and close-cropped hair—brought me into a room and had me sit on the patient bed. She stared at me for a moment, leaned back against a table, and continued to stare.

“Should I tell you what's been going on?” I asked, slightly confused.

She nodded.

“Okay, I'll start from the beginning.”

I told her about my experience earlier in the week of vomiting up a year's worth of bodily storage. I gave it a moment before continuing, searching for some sort of acknowledgment that she was aware of my existence: a nod; a disgusted face; a laugh; a tear. Nothing. She continued to hold a blank face that would leave me nervous even after the appointment. I explained how the next couple of days I had experienced Vertigo, doing everything I could to not collapse every time I got up, and pain in my right ear that continued to worsen. She approached me from the right and looked into my ear.

“Yep. It looks like you've got some sort of chronic ear infection going on,” she said, making her way to my left ear. “It looks like you've got a little bit in the left ear too. The right ear is nastier.”

“Really?”

“Yep,”she said as she made her way back to the table she had been leaning on before and leaned on it again, arms folded, “I'll prescribe you some Amoxicillin. That should clear up that nasty redness in there.”

“Okay,” I said, “Thank you.”
She nodded her head and left the room before I did. Odd.

Sarah and I picked up my prescription from Stop and Shop in New Paltz and I took my first dose immediately. I wasn't taking any chances. I wanted the rest of the weekend to be enjoyable.  

Thursday, May 3, 2012

Almost Better...I Think (Living With Cogan's Syndrome)


February 15th, 2012:

I was able to eat a bit today. Nothing of too exotic: some more Gatorade, a bit of rice pudding (I had no idea how much I would actually enjoy this stuff!), and store bought apple sauce. Thankfully, the nausea completely dissipated. The medication really did the trick. What I did notice, though, was that I was extremely dizzy. Yesterday, when all I could think about was wanting to feel better, the dizziness was hardly on my mind—today, was another story.

Sarah has been helping me do everything. If I needed to get up to do something, I'd sit up slowly, wait a few moments until I didn't feel dizzy anymore, and Sarah helped me up and walked me to my destination; she even helped me put my clothes on! Kind of silly, sure, but it was truly too hard for me to do on my own.

You know what it feels like, Sarah?”

What?” she asked me as I followed behind her toward the kitchen, my hands on her waist, her hands in a firm grasp around mine keeping me balanced.

It feels like I'm tipsy, but I haven't had anything to drink. I'm trying to stay as steady as possible but I feel as though I'll tip over or trip or bump into something at any moment.”

Really?” her voice exhibiting faint shock.

Yeah. It's totally weird.”

All day I felt like this. And another thing: my right ear felt a bit clogged as well—almost as if there was water in it. I tried moving my face and jaw around in all sorts of unnatural variations, hoping that some undisclosed liquid would come pouring out, relieving me of the annoying pressure. But alas—nothing worked. I've never had an ear infection before, but I'm guessing that's what it is.

Wednesday, May 2, 2012

Happy Misery (Valentine's) Day! (Living With Cogan's Syndrome)


February 14th, 2012:

Sarah and I weren’t going to do anything too spectacular for Valentine’s Day. We had just gotten back from a long weekend away with the youth group from our church and we were tired. We decided it would be best to just go out for a nice dinner—Thai food, perhaps? This was the plan anyway; the plan changed.

I woke up at two a.m., feeling nauseous. I quickly got out of bed and fumbled through the darkness of our bedroom. I swung open our bedroom door without hesitation or fear of waking Sarah, held out my hands towards the walls to steady myself in the gloom of the apartment. I found the bathroom, and just in time. Thus began what could quite possibly be the worst day of my life.

I went back to my room, crawled into bed and heard Sarah’s voice.

“What’s wrong, honey?” she asked, mumbling through her words; half asleep.

“I threw up.”

Sarah pulled me in close and rubbed my back. I tried to close my eyes, to forget about how I was feeling and fall back asleep. It didn’t work. Twenty minutes later I found myself in the bathroom again. I vomited three times within a matter of 30 minutes while in the bathroom. I was sure this was not the end. I tried to stand and make my way back to my bedroom, but I couldn’t even make it through the bathroom door.

I grabbed my towel off the rack, held onto the sink for support and knelt down. I folded my towel into a pillow and placed it down. I lay down on the cold, tiled floor, curled myself up into a ball, and fell asleep. Around seven a.m., Sarah woke up and found me in the bathroom. She asked me if I wanted to move to the bed or the couch. I’m fairly certain that I mumbled and groaned through a slur of incoherent babble and remained in the bathroom for a while longer. Sarah called her boss and took the day off from work—thank God.

When I finally made it into the living room, Sarah helped me onto the couch, as I felt overly dizzy and weak from my bathroom extravaganza. She placed blankets on me and asked me if I wanted anything to eat.

“I don’t think I can eat anything at all.”

I wasn’t on the couch long before I found myself needing to be back in the bathroom. This was my routine for most of the day: Vomit, lie on the bathroom floor, vomit some more, lay on the couch, and head back to the bathroom for another round.

By four pm, I had disgorged myself 14 times, and was unable to eat anything—save a spoonful or two of Gatorade—even that I couldn’t really keep down. Sarah called our primary care provider and was able to get an appointment at 4:30 with a Physician’s Assistant. The drive to the doctor’s office—a half an hour away—was grueling. I pushed the car seat back and tried to rest as Sarah drove. When we arrived, Sarah helped me out of the car and led me inside, to which I went straight to the bathroom and threw up for the 15th and final time that day. Time to see the doctor!

The PA, Linda, explained that a nasty stomach bug was making its rounds, and that this is most likely what I had. She prescribed me Prochlorperazine—a medication used to help relieve cancer patients of their nausea due to chemotherapy—and once I began to take it, I started to feel much better.

Then, finally—sleep—uninterrupted sleep.

Tuesday, May 1, 2012

January 2012: Eye Think This Might Be Bad (Living With Cogan's Syndrome)

January 2012:

This month has been so aggravating.  I woke up one day in the beginning of January with what I thought to be Conjunctivitis. Pink Eye, I thought. I’ve never had this before. What the heck? Gross. I had severe pain in my left eye—which would not stop tearing—I could barely look at the light, with a little extra morning gunk protruding out of the corner. My eye was extremely red. I called in sick to work and went to my primary care physician immediately. I had never had pink eye before so I didn’t know what to expect. In fact, my wife, Sarah has had it multiple times, and I never once caught it from her, so this all seemed odd to me.

Based on my description of the symptoms I was experiencing, my doctor believed it to be Conjunctivitis as well. She prescribed me eye drops and I was on my way. Unfortunately, the eye drops didn’t work. I spent a couple of nights in much pain, sprawled out on the couch, with uncontrollable streams flowing from my eyes. It was unbearable. I was pretty sure that the doctor was wrong about my condition. I ended up seeing her two more times—in the meantime, my right eye began to have issues as well—until she finally decided to refer me to an ophthalmologist.

After taking a closer look at my eyes, the ophthalmologist believed me to have Uveitis. He prescribed Prednisone eye drops, which he alleged would bring down the inflammation. I began using the eye drops right away. At first, I noticed slight relief, but not enough to feel comfortable. I decided it would be a good idea to wear an eye patch on my left eye anytime there was a light on, or when outside. This included at work—I work as a teacher’s aide at the daycare at Eastern Connecticut State University—so the kids all decided to call me “The Pirate” upon seeing me and ran like mad.

I spent most of the month like this: wearing an eye patch to work; taking Prednisone whenever my eyes felt like they would burn out of my skull (which was pretty often). Finally, by the end of the month, things are beginning to taper off. The pain isn’t as bad, although it does flare up every once in a while.

Hopefully, February will bring brighter days. Days in which I can actually stand to have a lamp on in my bedroom.

Introduction (Living With Cogan's Syndrome)


This blog is dedicated to revealing what it is like to live with an autoimmune disease. Since being diagnosed with Cogan's Syndrome in early April of 2012, but having symptoms dating back to early January, I have undergone some serious life changes. This journey—albeit only four months thus far—has not been easy. I’ve lost hearing in both of my ears;  have had non-stop vertigo;  been overly tired; experienced extreme nausea; stopped working due to the vertigo and hearing loss; lost confidence in myself, especially when it comes to engaging in conversation. The list goes on; however, it has not all been so miserable.

The posts will begin where my health issues first started—in the beginning of January, 2012. I will date each post as if it is the actual day I am speaking about. The blog will mainly be in the style of a journal. I hope this format will be informative for those of you who don’t know anything about Cogan’s Syndrome as well as for those of you who do. I will be very open about the affects the disease has had on me physically, emotionally, and spiritually.

Let the journey begin…