So, heaven at work was short lived. As much as Monday was awesome not having to wear earplugs or headphones, yesterday and today was back to usual with the sounds of soda cans popping, wrappers crinkling, people whistling etc. [Sigh!] Maybe I'll luck out and no one will come into the office this coming Monday either. I did speak to our HR person to see if we can figure out a better location for me where my misophonia won't be triggered as much. It's not going to be easy, given the "lay(out) of the land" but I'm happy that my firm may be willing to help me make my work environment more bearable.

Last night, while flipping through the channels trying to fall asleep (despite still being on a caffeine high so many hours after having a large latte earlier that morning), I came across an episode where David Letterman was interviewing the members of Led Zepplin. Every time the camera switched to a full-shot of the stage, showing all the band members as well as Dave, I noticed that one of the band members would not stop tapping his foot - even while his colleagues were doing the talking. It was very strange because usually I only remember being bothered by sound triggers on TV but this was definitely one of my regular visual triggers that usually bothers me at work or at a restaurant. As I was watching the show (careful to look away any time they pulled back to a full-stage shot), it made me think about the Mayo neurologist's comment about my triggers being situational. It occurred to me that I may not have answered his question correctly when he asked if I was bothered by the same triggers if I did them. The more I thought about it, the more I realized that if I'm conscious  that I'm doing a trigger (like tapping my foot), I stop myself from doing it. Maybe I am bothered by my own trigger actions but just never thought about it because I can control them.

Perhaps something to ask the neuro-otologist when I meet with him next Wednesday...

Instead of using up a vacation day today, I came into the office to play catch-up . During the majority of the year, I'm juggling nearly 50 scheduled and "drive-by" unplanned projects while wearing multiple designer/project manager/marketing hats. On top of my regular job tasks, I also speak at conferences and local universities, write articles for professional magazines, chair my firm's Events Committee, am on the board of a local professional association, participate in community theater (on-stage and behind the scenes), and even work on my book - just to name a few things keeping me on my toes. (That doesn't even take into account that after 40+ years of living on the east coast, I'm still trying to get settled-in from my move to the Midwest last year.) Sometimes it feels like I'm in the middle of a taffy pull, because no sooner do I complete one task, then five more pop up. (All I can say is thank goodness that I don't have to wear I/T and CAD manager hats on top of everything else, like I did at my prior job. LOL!)   %-)

With all that's on my plate on any given day, I actually love working during this time of year. The majority of my coworkers take the days surrounding the holidays off, so it's a very different work environment. There are only a half dozen others here who, like me, decided to come into the office today. Most of them are located on the floor directly above me, but in the approximately 40' x 75' lower level area where my desk is located (affectionately called the "Garden Level"), I'm completely alone. Believe it or not, that's actually a good thing. This is the one time of the year when I don't have to wear earplugs or headphones to drown out the triggers in my office to focus on my work. It's so wonderful not needing any coping techniques in order to function like a "normal" person at the office.

If you're wondering what I mean by that, during any other time of the year, I'm constantly tortured by "innocuous" sounds around me that don't seem to bother anyone else: soda can tops being opened,  crunching of crispy fruits/vegetables/chips, clanking of utensils on chinaware, slurping of coffee, people reading out loud to themselves (especially the hissing of their "s" sounds), the buzz of speakers being played softly, the crinkling of wrappers being opened, pens being clicked or tapped on the desk... But the worst of all... WHISTLING! (Darn that "Whistle While You Work" song!) Those are just the sound triggers! Every day my senses are endlessly bombarded with distracting misophonia triggers - audio, visual, tactile, and sometimes even smell. Although I usually cope by wearing earplugs or blast music through headphones to block annoying sound triggers, when I have to participate in team meetings or go on the phone to speak to clients/reps/contractors/consultants, I'm left completely exposed and helpless to triggers coming at me from all directions. 

Don't get me wrong, compared to other firms where I've worked over the years, I like my current firm. The people are genuinely friendly and the design work is challenging. There is one aspect of my firm though that is a double-edged sword to me: the physical environment. My firm strives for good communcation within the teams (something I embrace and wished that my prior firms did better); however, in order to facilitate communication, the dividing partitions between desks/cubicle areas are barely 16" above the desk surface. There's practically no sound insulation at all, which really exacerbates my misophonia. (Having an individual cubicle with 5' high partitions is one of the few aspects of my prior work environment that I miss, even though the communication within that firm was horrendous.)

That's why I enjoy coming into the office during the holiday season instead of taking a personal day off for an extended weekend. Other than the slight blowing sound of the HVAC heating ducts, the occasional sound of footsteps from the floor above, and the soft ticking of my desk clock (which I honestly didn't even notice until I was writing about how quiet it is right now), there's not a trigger to be heard. It's pure heaven compared to what it's like during a normal  business day.

(Sigh!) Well, two nights ago we had a major snowstorm. Twelve inches of heavy, wet snow in about twelve hours with wind gusts hitting 50 mph at times and the snowfall didn't stop until around 9 a.m. yesterday. The roads were completely covered with packed snow and the lighter stuff blew around with the fierce winds, almost creating a white-out condition. Soon after lunchtime though, the skies cleared up with not a single cloud to be seen. (It was still pretty windy though...) 

I was optimistic that the roads would be driveable this morning; so that I could still go to my Neuro-Otologist  appointment. I even prepared for the bad roads by giving myself an hour for a drive to the doctor's office that should have only taken about 10-15 minutes tops under normal driving circumstances. As I put my office laptop into the trunk of my car, my cellphone rang. The doctor was sick, so they needed to push my appointment into the new year. Drat!

Yesterday I also heard on the news that the major highway that I'd have to take back to the Mayo Clinic for my follow-up appointment on Monday had been closed in some parts, due to the snow and even a major 25 car pile-up.  (I'm sure there must have been others along the entire stretch I'd have to travel.) Since this morning I wound up driving a mere 20 mph on a route that I normally can cruise around 70 mph on my way to/from work, I felt that I didn't want to have to drive that slow to get up to my Mayo appointment in one piece. It would mean it'd take me over ten hours of white knuckle driving conditions.  Not the way I wanted to spend part of my holiday weekend. So, I cancelled that appointment with the idea that I'd either reschedule it again if things didn't go well with the Neuro-Otologist or maybe find a similar follow-up doctor locally. We'll see...

So, while I wait for the new year to come for the next leg of my journey towards relief from this condition, my weekend will be focused on relaxing, enjoying the holiday, writing more of my book proposal, further development of this website, reaching out to friends/family/colleagues, reflecting on my past and thinking ahead to the future...

So, even though I was a bit disappointed by last week's initial visit to the Mayo Clinic, this morning I followed-up on a lead on a local doctor who is a Neuro-Otologist. (Essentially, he is both an Ear/Nose/Throat doctor and a neurologist.)  I was fortunate to be able to schedule an appointment with him for this Friday morning and if all goes well, I may forgo the 3+ hour trip back up to Mayo, or at least postpone it for a while.

The woman with whom I scheduled the appointment said that this doctor has seen patients with misophonia before, and given that he specializes in both the brain and ears, I'm very curious to hear his thoughts about this condition.

So, between staying up really late to launch this website so I could kick-off the blog with my Mayo Clinic journey then getting up at 5 a.m. to be ready for my 7:30 a.m. appointment, I got very little sleep the night before my appointment. It made it so difficult to leave those soft, fluffy pillows that morning.

Anyway, it's amazing how efficient the Mayo Clinic is. Yesterday I arrived at the check-in area at 7:15 a.m. and there were already several people waiting in line and over a dozen others sitting in the waiting area. Within a couple of minutes I was at the front of the pack meeting with one of the receptionists. After she answered a few clarification questions for me, I gave her my completed forms and she handed me a little beeper. When the beeper went off, I was to go to Door "C". The room was extremely large. On one wall, there were two openings that had the letters "A" and "B" over each respective opening and the opposite wall had openings with "C" and "D" over them. I felt like I was waiting in a very nice DMV office instead of a health clinic. (Too bad DMV's don't run as efficiently as that facility...)

As I waited for my beeper to go off, I found myself moving to various locations in the waiting room... One gentleman behind me was nervously tapping his pen on his papers, so I got up and moved to the other side of the room. Then one young person out of a group of six sitting together kept cracking her gum, so I got up and moved again... (I noticed one of the guys in the group watched me as I moved to another seat across the room.) Even while wearing my earplugs, I must've moved four times before I found a comfortable place to wait. By the time I finally got settled in, I maybe waited one minute before my beeper went off. I walked over to the woman standing by Door C and she took me into the back "C" area to take my vitals and history. The aftermath of my aggrevation from being bombarded by the various triggers around that waiting room was not lost on me. When she took my blood pressure, it was 125/75, which is higher than my usual reading of 111/70. In fact, it was probably the first time I could remember when my systolic reading was ever above 115.

After she finished with my readings, she walked me down to another examination room where I was to wait to see the doctor. It was a very different atmosphere than what I was used to seeing in other doctor's offices, even the one's I've designed. As a lighting designer, I'm constantly aware of how a space is illuminated and what struck me most about my walk down the corridor was how dimly lit it was. (That and, other than the woman who was guiding me from one room to another, I didn't see another soul in the entire "C" area.)  The examination room itself was well lit though. It had one big window looking out into the city, a very tall wood wainscot around the entire room, a wooden changing room with a curtain pulled back, a long couch directly across the room from a wooden examination table that had a padded cushion on the top (although I noticed it rested on a scissor type stand, probably to be able to raise it higher if necessary.) It was very different than some of the more cold, sterile examination rooms I've experienced in the past.

I sat on the couch waiting for the doctor to arrive and immersed myself in thinking about the experiences that led me to this point. After several minutes, there was a knock on the door and the doctor entered. He sat down at his desk and asked me to tell him more about why I was there. I explained how I learned I had misophonia and that, after discovering that the closest physicians who deal with the syndrome were over a four-hour drive from me, one of the HR people in my office as well as the director of my studio suggested that I try to see someone at the Mayo Clinic. He commented that he had never heard of the condition before and even looked it up on his computer right in front of me. I noticed that he pulled up one of the most informative websites I've found to date (www.misophonia.info). I continued describing to him what it's like to have to deal with misophonia on a day-to-day basis, and went on to say that even though the physicians I've discovered with knowledge about the condition are audiologists, given that my triggers go beyond sound to include visual and tactile (as well as a little bit of smell and taste), I figured it was more of a neurological issue. He actually said to me at two different points during the visit how thorough I was with my descriptiveness. I explained it came from being an artist with a high attention to detail.

He asked me to go into the little changing room and change into a gown. He then did some simple tests, which I can only assume were to gauge my brain functionality. Motor tests like walking down the hall and back, watching him move is fingers with just my eyes, touching his finger then my nose and back again, (I swear officer, I didn't have anything to drink since last night... LOL!), even having me resist his pushing against my fingers/hands/arms/legs. In the end, he said he didn't think it was a neurological disease, mainlhy because of a comment I made about being annoyed by triggers only when other people do them, not if I were to do the same trigger action. He said because it seemed to be a situational reaction, and he wanted to refer me to a psychiatrist there. Although I was disappointed that I wasn't able to get the kind of feedback from him that I was expecting, I figured if it might help lead me to some relief from this condition, I couldn't reject any potential avenues. Unfortunately, they weren't able to get me an appointment until January 4th. I luckly was able to move that up to December 24th, but it still meant that I drove over 3 1/2 hours and stayed overnight in a hotel for just under a 2 hour initial visit.

I checked out of the hotel and thought a lot about what the doctor said the entire ride back. It occured to me that maybe, just maybe, the reason why certain triggers bother me when other people do them and not when I do the same actions is that when I do them, I am conciously doing them and therefore my mind is able to prepare or adjust accordingly. I thought about some of my triggers, such as the whoosh-clack of a soda can opening and how it happens so fast, there's not just any way to prepare for it, but there's no way to react to it either. It's over just as quickly as it started, yet even though it's a short interruption in whatever I may have been doing at the time, distracting me for that brief moment, the sound echos through my head and it's hard to get back into the swing of whatever I was doing.

Well, I may not have expected a quick fix to this condition, but I hoped to have gotten a little more progress than what I felt on that long drive back. All I can say is that although the doctor had never heard of misophonia before, at least I planted one little seed that might grow to a greater spark of interest or discussion amongst him and his colleagues. Who knows, maybe I can be a regular "Janey Appleseed" who plants a tiny bit of knowledge about misophonia with people wherever I go.

Today, after setting up the lighting for my company's Open House celebration for our clients and wrapping up a few other loose ends at work, I drove over 220 miles up to Rochester, MN to get settled into my hotel room before my 7:30 a.m. appointment at the Mayo Clinic Neurology Department. The entire ride up, I still couldn't believe this visit was actually going to happen.

A little background about what led up to this trip: I first contacted the Mayo Clinic back in July, when I first learned about misophonia. My preliminary research revealed that there were no physicians in Iowa who had experience with misophonia patients, the closest practitioner to me was over four hours away from where I lived, and to get to the others would've meant a minimum two hour flight. Two of my coworkers suggested that I inquire at the Mayo Clinic, which was about an hour closer than that nearest practitioner. Unfortunately, I was told I'd have to be put on a waiting list because my condition wasn't considered an urgent situation. In all honesty, I never thought I'd get off that waiting list but just two weeks ago, I received a phone call from Mayo saying that they were able to give me their last appointment of the year, on the afternoon of December 28th. I was concerned that, since they're closed on weekends and holidays, the multi-day trip to the clinic would mean that a portion of my time might be in the New Year after my health insurance deductable contributions resets to $0. I was told to keep calling back to check for cancellations and son-of-a-gun, this past Monday I was told they had an opening for tomorrow morning. Without hesitating a beat, I switched my appointment for the earlier date... Now I'm here getting ready for the big day tomorrow. It's so exciting to know that I'll be seen by some of the top physicians in the country. I'm very hopeful for what may ensue from this trip...

After settling into my hotel room this afternoon, I decided to take a walk to check out where to check in for my appointment in the morning. I'm glad I did because halfway through the winding skywalk connecting the hotel to the adjacent buildings, I made a wrong turn. A lovely couple saw me trying to get my bearings and steered me back on track. It was such an interesting walk to the clinic. The beginning part of the lower skywalk reminded me of the Crystal Gateway underground corridors in Pentagon City, Virginia lined with restaurants and stores throughout the passageway. Once the skywalk corridor entered the Mayo complex, it became more intimate in scale with wood finished walls pierced here and there with art displays. As I neared the end of the corridor that opened up to my clinic's building, I heard the lovely music of a piano playing. It sounded like when I was back on the east coast hearing a pianist in Nordstrom's playing to entertain the weary shoppers. I thought to myself that the sound was resonating too much to be something being played over a sound system and I was right... When I reached the end of the corridor, there to my right was a man playing a grand piano in a multi-level open atrium. The echoing sound in the space enveloped me and it almost felt like I was dreaming. I didn't need anyone to pinch me to prove that I was truly there though.

So, after enjoying the sound of the piano for a little bit, I found the check-in point for my appointment then headed back to the hotel to relax and fill out 19 pages of forms and questionaires sent to me in preparation for my visit.  As hard as it is to believe I'm actually here, it's exciting to know that tomorrow I embark on my quest for relief from this frustrating condition.

To be continued...