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The "Butterfly's Whisper" Blog

Welcome to my blog. I hope by sharing my own misophonia experiences, others who are frustrated with misophonia sensitivities will discover that they're not alone. I also hope that people who may not have misophonia will gain some insight about what it's like to have this condition.

Please feel free to post any comments or use the "Contact Us" page if you have any questions/comments you don't want to post online.

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The Mayo Clinic journey begins...

12/13/2012

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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...
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    About the Author

    Emlyn Altman has been suffering with misophonia for over 35 years, even though she only found out about the actual medical condition much more recently. As frustrating as the condition has been over the years, her heightened sensitivities across all the senses considerably influenced her talents within the visual fine arts (particularly sculpture), music (singing, piano, and many other instruments), writing, and culinary backgrounds, as well as professional achievements as an architectural lighting designer. Her goal in developing this website is to promote more awareness about misophonia and help other sufferers as well.


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