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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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A (not so) quiet office day

12/26/2013

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Typically, I enjoy going into the office the days between Christmas and New Year's. So many of my coworkers are away on vacation that it is usually the most quiet and productive time of the year at the office for me. Unfortunately, today was far from the norm.

I don't mean that people didn't go on vacation. If there was twenty people in the office (out of close to a hundred), that was a lot! Unfortunately, later this afternoon I went to my project manager's desk to  coordinate with him on a major project. We spent nearly two hours going room by room, discussing architectural details and conflicts that needed to be worked out and from the moment we started, halfway across the room I could hear one of the principals whistling VERY loudly while in the printing area. I am not exaggerating when I say he was whistling loud. I put in my best earplugs at the first hint of him whistling, at times I couldn't even hear my project manager sitting next to me, yet I could hear the principal's whistle loud and clear fifty feet away. It was REALLY getting on my nerves and considering I am 99% certain that it was that particular principal who gave me a scathing, biased, and inaccurate performance review, a part of me kept feeling like he was deliberately doing it to dig that dagger into my body even further.

To be clear, this is the same principal that I've posted about multiple times who whistles while reading a menu every time we'd be on a business trip and he'd sit across from me during our team dinners (along with other occasions such as while the team prepped for team meetings). He knows about my misophonia, I've discussed it with him on more than one occasion, and yet here I was having to put my fingers on top of my earplugs to stop him from making me feel like I had two ice-picks boring through my ears. AAargh!!! I was so grateful when we finished our meeting so I could escape back to my desk. (Unfortunately, we're having a follow-up meeting tomorrow afternoon. I hope to heaven that the principal decides to take tomorrow off, or at least leave early!)

On a happier note though, as a follow-up to yesterday's post: I got an email back from the moderator of the misophonia.com website. He put the full letter of positive misophonia thoughts and helpful holiday suggestions on the website. (Thanks Richard!!!)  I highly recommend reading it, especially if this time of the year seems to get that much more stressful for you.

Wow! It just hit me. Is it really less than six days until 2014?!?!?!?
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Looks like we're not in DC anymore, Tooki

12/25/2013

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Happy holidays, everyone. For those of you who might not get my modification of the Wizard of Oz quote, Tooki is the name of my cockatiel and after driving around for an hour and a half this afternoon looking for a Chinese food restaurant where this Jewish gal could get a yummy Xmas meal, I finally found ONE restaurant (other than Perkins) that was open today. Mind you, when I first moved here two years ago, I was completely floored by how EVERYTHING was closed on Christmas (even the stores/restaurants that typically are open in the major metropolitan cities on the east coast.) This year I thought I had a good plan in that I would try to go to restaurants in hotels for my Xmas evening meal. No such luck. They were all closed and the only hotel eateries  that were open were the bar areas, but even they closed at 5 p.m. Luckily, I remembered that the sushi place I normally visit once a week for their specials was supposed to be open, so here I am... Finishing off a special sushi roll, thankful I didn't  have to resort to breaking into my canned soup stash (which I keep in case of a weather emergency.)

This time of the year is typically not easy for me, but this year was especially hard after the crappy (and inaccurate)  performance review I got this year. (I've been trying very hard to write a rebuttal letter, but it's difficult to write it in a professional tone when all I want to do is tell them off about how unjustified their comments are... As I mentioned in a previous post, I will not spend time on this blog venting about how obnoxious and biased the feedback was so let me move onto more productive topics.)

Yesterday, I received an email from the moderator of the misophonia.com website (which I'm sure he sent to all the subscribers of that site.) I found his words very timely and encouraging, especially since it was clear he understood that this time of the year is especially difficult for people with misophonia. He gave some wonderful words of wisdom for how to not let the holidays get to you, and although I emailed him hoping that he'd put the letter on the website for me to give you all a link to read directly, I haven't received any response from him yet. (I'm not surprised or offended though. It is the Christmas holiday so I'm sure people are with their families or have other things on their mind.) In general, he suggested that we find outlets that help us relax and de-stress, whether through meditation, breathing techniques, or other ways to bring a smile to our faces. (Lately for me, I've been coming home and putting on my fireplace, lighting some scented candles, drinking some herbal tea or even some sake - if it's been an especially difficult day.) I didn't want to include his letter here without his permission but he did include a link to a post on his website asking people to contribute their solutions for how they deal with the holidays. If you want to read some of the posts, or contribute ideas of your own, click here...

Other than that, this morning I realized one type of non-sound triggers that are accentuated during this time of the year: my tactile ones. Yesterday, the high temperature out here was -17 degrees Fahrenheit, and that was even without the wind chill. Wintertime is especially difficult for my tactile triggers because my hands are much drier than usual, so I wind up being bothered by touch sensations - even the ones that don't normally bother me. I have to keep a bottle of hand lotion within reach at all times otherwise I'd drive myself nuts with tactile triggers. I can't even put on my favorite gloves anymore without slathering my hands with lots of hand lotion first. Oh well. It just makes me look that much more forward for spring to come my way.

Merry Xmas and happy holidays to all. May your new year be happy and trigger-free!
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Wrapping up 2013

12/21/2013

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It's amazing how fast time flies. So many good, bad, and even occasionally ugly things that happened over the year, I'm actually looking forward to hopefully starting another year fresh and hopefully leave a lot of 2013 behind me.

 I think I've finally wrapped up the last bits and pieces from the car accident in June (I'll believe it when I actually have Geico's settlement check in hand.) I've survived another year (barely) of being overwhelmed at work due to lack of resources and additional supporting staff. I've had may wonderful comments and emails through the SenseHaven.com website and am looking forward to seeing it grow further in the new year. I even got the official go-ahead to participate in the misophonia fMRI study. (I'm sure I'll be counting down the days for that trip.)

Today I wanted to play catch-up with a lot of overdue writing: holiday cards, work responses, long overdue inquiries about family matters, and of course, trying to get closer to wrapping up my manuscript.  Easier
PictureHow can someone get mad at that cutie?
said than done though. Normally, I try to decompress over the weekends to make up for stressful weeks at the office. This usually means taking my boid out of the cage first thing in the morning and cuddling with him on my shoulder as I read or catch up on my DVR recordings. So, this morning I left him in the cage while I hunted for my stash of holiday card packs. (I always buy more than I ever send out.) Unfortunately, because I was looking in rooms where my little guy couldn't see me, he kept making the one whiny sound that is my worst trigger while I'm in my "fortress of solitude" apartment. Normally, he's pretty quiet, usually because he's always out and on my shoulder whenever I'm around; however, when I try to do things around the apartment that requires me to constantly be bending down, standing up, and just moving every which way but loose, it's not practical for me to have him on my shoulder. He usually walks down to my butt when I'm bending over and if I move around too quickly, he flutters to the floor looking at me to pick him up again. So, it's doing these chore and object hunting tasks when I leave him in the cage, and that's when he's most vocal whining to get out.

How can he understand that his whines drive me crazy (and are the reasons why I literally walk out the door instead of trying to get any work done at home). I know I'm his soul "flock-mate," but there are some days that I wish he'd just knock it off and let me do my stuff around the apartment in peace. Don't get me wrong, I love the little guy to pieces. If he didn't do that one whining noise, everything would be perfect.

On the bright side though, his persistent whining does get me out of the apartment - even if it means going somewhere to sit in an isolated corner of a coffee house plugged into my loudest music just to be productive. After several hours, I head back to the apartment and although I might get a bit of a cold shoulder from the little guy (either that or he'll start yelling at me the second he hears my key entering the lock), in a few minutes he's back to nuzzling in my cheek, and all is well again with him trying to steal bites from whatever I'm trying to eat (don't even think of trying to unwrap a Baby Bel cheese wheel near him He'll try to get a piece by any means possible)...

Despite his annoying whining tendencies now and then,  he's very good at knowing when I've had a rough day and need a cute fluffy face falling asleep in my cheek or him imitating my laugh to get me smiling and laughing back at him. He can tell when I'm upset about something - especially when I'm venting to someone over the phone. (He does get quite vocal when I'm speaking very excitedly on the phone.) As much as a cat may be a more ideal (quiet) companion for someone with misophonia, given my major allergies to cats, that was never going to happen and to be honest, putting aside an occasional whine from my little guy once every couple of weeks, he's my little buddy and I wouldn't have it any other way!

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fMRI Study

12/18/2013

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Well... It's official! Today I scheduled my flight and hotel reservations for the London fMRI study. My wallet might be hurting for a while (and it might hinder me from approaching the NFB testing in the new year as I originally intended), but I *really* wanted to do this. All in the name of research, right?

So, if anyone in the London area might be interested in meeting up to chat some time while I'm in town, please let me know. You won't have to worry about me slurping if we were to go out for an afternoon tea. I *always* let the tea cool down until it's tepid (or just get iced tea right from the start). Yes, I know it's probably sacriledge to not drink afternoon tea when it's not hot, but I never saw the point of scalding my tongue to the point of not being able to taste anything for weeks. (The fact that slurping is one of my triggers doesn't help either. LOL!) :-)

I'm also looking forward to next week, when I hope that the majority of the office will be gone for the holidays. I love working during the last weeks of December. It's usually so quiet. Hopefully, this year won't be any different.

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Festive Triggers ('Tis The Season)

12/18/2013

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Oh, I so look forward to Fridays - especially when I know the end of day "work whistle" is about to blow. (As much as whistling is my worst trigger, somehow thinking about the Flintstone's work whistle bird brings a smile to my face.) I'm already tired from last week's disappointing employee performance review (if you can even call it that). But as much as my thoughts occassionally turn to what I might say in a rebuttal statement, I still plod on forward... Trying to make the best out of a horrible situation.

One of the nice things my firm does for community outreach is to donate some of our office space to non-profits in the area (right now, the Chamber of Commerce). Yesterday, the Chamber had their own holiday open house celebration, which would have been fun to attend, had I had the time to spare from my project work.

One annoying thing that happened during their preparation for the event was that a group of them decided to create small table centerpieces of glass beads in square glass voitive holders. Unfortunately, they decided to do their prep work on top of the metal filing cabinets right behind where I sit (literally 8' away at most). I'm sure the decorations looked very pretty but after a minute of the Chamber people dropping multiple glass pebbles in the glass containers on the metal cabinets... I was about to explode. Were they THAT oblivious that someone was actually trying to do work with all that loud "plinking" racket going on?

Finally, I said to them, "Could you PLEASE do that somewhere else?" They looked at me sheepishly as if to say, "Oops, yeah we didn't think about the noise bothering anyone," But after that, they moved their craft materials to a table on the level below mine on the other side of the reception area. What's ironic is that I could STILL hear the loud plinking noises (albeit not as loud as when the three of them were directly behind me). It was still pretty annoying though.

All I can say is: 'Tis the season for people to be creative with their holiday decorations but also for their consideration of their neighbors to decline somewhat. Must be all that holiday egg nog going around that's dulling people's courtesy sensitivity neurons. Maybe I should take a few swigs of it to hopefully dull my trigger sensitivity neurons too. ;-)

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Happy Anniversary, Sensehaven.com!

12/17/2013

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(I actually wrote this post last Saturday night, but since the iPad didn't write my title correctly,  the edited post date doesn't match when I originally posted it - 12/14/13)

Anyway, I don't know whether it's better to say happy anniversary or happy birthday but one year ago (12/14/12), I launched SenseHaven.com while embarking on my journey to find relief from misophonia - the kick-off post being the experiences during my trip to the Mayo Clinic. I knew my time there would be important to document in tbe blog but in my mind, the ultimate goal of the overall website was to promote more awareness about misophonia to sufferers and non-sufferers alike so that others like me wouldn't have to suffer for decades not knowing there was actually a medical reason for their selective sensitivities.

Since SenseHaven.com was launched, nearly 22,800 unique visitors have visited the site from around the world, and I have you all to thank for that. So, THANK YOU!

I have some interesting news that arrived yesterday evening and, given SenseHaven's milestone, the timing couldn't be more perfect! I received an email from the researcher conducting the misophonia fMRI study with the official go-ahead to be a participant in the study. (My official test dates are in mid-February.) I'm very excited about the news!

Hopefully, this will be the beginning of many more research opportunities to come in the near future. (I've even started developing some potential research ideas too.) More research = better understanding, which hopefully will lead to more universal awareness (not only within the medical community but also by the general public). This will eventually lead to more tolerance towards sufferers and perhaps a consensus for how to successfully treat misophonia.

Taking one step at a time eventually allows people to climb mountains!

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TGIF...

12/6/2013

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Despite all the frustrations of having to deal with my misophonia day after day, life outside of triggers still goes on. I'm not happy about not having posted for a while but let's just say it's been a rough week physically (got sick) and mentally (mainly work-related issues). I won't go into detail about my work frustrations. It's just another situation where I'm being set up to fail at my firm by having to do the work of three people with no possibility of ever getting help. I'll stop right there though, for fear of venting on issues that don't relate to misophonia.  All I can say is thank goodness the week is over, especially since I got a new cell phone and haven't set up my work email on it yet. Hopefully that should allow me a tiny possibility to not think about the office this weekend. (It's a long shot, but one can always hope...)

Misophonia-wise, it was a pretty status-quo week for me other than this evening being our office's holiday party for our clients. A couple of people at the festivities who knew about my misophonia asked me if the noise of the party bothered me. I think they were surprised when I said that the sound of so many people talking was more of a background "white noise" to me, similar to the continuous soft roar of a HVAC (heating, ventilation, air-conditioning) system. Even when I tried to demonstrate to someone the type of sound that does bother me by drumming my fingernails on a table, the sound of the party drowned out the "tack-tack-tacking" noise. I could barely hear it.
PictureMy grad school's studio (Photo from http://journal.barrocal.pt/)
Thinking about the buzz of people talking at the party drowning out potential triggers just made me realize that perhaps one of the reasons why I might not have noticed as many triggers during my late grad school years is because the studio space where everyone worked was always busy with students 24/7. The open space was always filled with energy, and the dull drone of noise by more than a hundred students working, talking, scribbling and creating in the same four-story open space filled the air... There was no carpeting or soft materials to dampen the sound. In fact, it wouldn't surprise me if the architectural design of the facility enhanced sound transmission throughout the space. It was only when I was away from that busy activity and in smaller/quieter spaces, with only a couple of people around me, that I noticed trigger sounds bothering me.

I'm laughing to myself as I type this because I haven't thought about the energy of that studio space in a very long time. (I graduated from there almost twenty years ago!) Oh well... At least thinking about that fun time in my life keeps me from thinking about work crap (to put it mildly)...   :-)

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The creative misophonian

12/1/2013

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One of the things that my aunt would say, whenever we'd have discussions about my misophonia, is how creative I am in so many different media: music, sculpture, writing... I know that part of it is because she's trying to be very supportive and encouraging of who I am and how much creative work I've done throughout my life. The more I learn about misophonia, the more I wonder how much of my creative abilities have been supplemented by my hyper-sensitive senses of hearing, touch, sight, and even a bit of smell and taste. (I've been very creative in the kitchen of late.) I don't think it's such a far-fetched idea, especially considering what I recently discovered while doing some more informal misophonia research.

I belong to a couple of misophonia discussion groups and every now and then, someone will pose a question that inspires me to try to look for an answer. So when a person asked  if anyone  knew about a recent National Geographic report on misophonia, I'll admit, the thought of such a report piqued my interest to know what the report would say. Of course, I tried googling "National Geographic report on misophonia" but didn't find the report. I even went to the National Geographic channel website but searches of "misophonia" and "sound sensitivity" came back with no results. What I did find from the initial Google search was an artist who did an album cover for the Danish heavy metal band called Misophonia on a website called deviantArt. I'll admit, the artwork really captured the emotion of what it sometimes feels like to be exposed to triggers - the rage created by a little needle jabbing at the ear. Although the image is unsettling, it is powerful and familiar at the same time.

I looked at some other images on the site, not all of which focused on the subject matter of misophonia. One other that caught my attention was a comic strip (page) illustrating a student with misophonia being bombarded by triggers during class. Even though it was a much simpler visual work than the album cover, in the back of my mind I could hear the various triggers conveyed in the various frames.

Between the visual artistry of these artists and the musician Paul Tabachneck, whose song "Misophone" I mentioned in the "Video and Audio Clips" page in the "Other Resources" section of this website, and my own experiences, I started to think about how many other artistic people are out there who might also suffer from misophonia...

Who knows, perhaps the creative Van Gogh cut off his ear to try to lessen aural misophonia triggers with which he may have been bombarded. Okay, that one may be a stretch, but it is and interesting thought to consider... I kinda like that possibility over what has been noted as the real account of how Van Gogh lost his ear. I can't tell you how many times I've lamented my excellent hearing and wished I could give some of my aural sensitivity to someone needy with hearing difficulties. (To warp a quote by a famous comedian, "Take my ear... PLEASE!")     :-)
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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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