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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.

Contact ME

Traveling along...

1/27/2014

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Wow. I didn't realize how long it had been since I last posted an update. I guess I've been pretty preoccupied...

Of course, trying to deal with the layoff has taken up a good chunk of time, especially getting out applications for potential academic positions and trying to get some consulting clients too. Last Tuesday, I was finally able to clean out my desk and pick up my last paycheck from my old office. It was a bit stressful going back there but I think there have been a lot of changes happening in that place. (It actually was eerily quiet when I was there.) I have no regrets about what happened though. I think I've gotten so used to putting up with bad environments (and I'm not just talking about trigger exposure), that I wind up staying put longer than I should. Their giving me "the boot" was just the kick in the butt I needed to reboot and start taking better care of myself. It's amazing how much better I've been sleeping since leaving that place.

Friday, I actually took a spontaneous drive up to Chicago to take care of several things that I couldn't do in Iowa. (Yes... Believe it or not, Chicago was actually the closest city where I could take care of those things - despite being over 350 miles away.) It was a very short trip, since I decided to head back Saturday morning to beat the second snowstorm that was about to hit while I was there. I only had one major trigger experience, and that was actually while I was checking out of the hotel. I was lucky in that they gave me a room on the top floor in the end corner of the building, with only one adjacent room; but when I was leaving... There was a housekeeping guy halfway down the hallway whistling very loudly. I scrambled to put my earplugs in as quickly as I could. Figures that when I got to where he was, right by the elevators, he wanted to start a conversation with me. I probably was a little snippier than I should have been (it's bad enough that I'm not a morning person, let alone be bombarded by my worst trigger when I'm in that grumpy mood), but at least I had a long drive back to unwind.

During one of my errands, I had a nice discussion with one of the customer service people about my misophonia. I don't quite remember how it started, but I explained how sensitive I am to certain sensations. (I might have been commenting about how the extreme cold makes my tactile sensitivities so much worse, as I was slathering lotion on my hands.) The agent was intrigued by my sensitivities and commented how her niece seems to have similar sensitivities. I told her how I found out about the 20/20 report on misophonia from a stranger across the plane's aisle from me and gave her a card to my website. I swear... The more I talk about my sensitivities, the more I find others who have (or know people who have) similar sensitivities. I think the more we keep our frustrations bottled up (for fear of offending others or looking like we're crazy), we're doing more harm than good - not just to our own well being, but also in promoting more awareness about the condition. Of course, the delivery is just as important as the message itself, but I do believe we shouldn't be afraid to be vocal about our sensitivities.

I'm starting to count down the weeks/days for my trip to London for the fMRI study. It's exciting to think that I'll be a part of such major research that could be so beneficial in our understanding of misophonia. Part of me is psyching myself up for the trip, part of me is bracing myself knowing I'm deliberately going to subject myself to trigger sensations knowing I won't be able to move a muscle when I do, and another part of me is looking forward to going back to a city I haven't visited in decades. I'm especially looking forward to enjoying a relaxing afternoon tea or two while I'm there. (Ever since I moved to the Midwest from the East Coast, I have yet to find a traditional British tea out here, something I miss greatly.)
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Moving forward steadily along

1/18/2014

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It's funny how different things have been over the past week, now that I'm no longer at my previous employer. My trigger exposure has come way down, which I really think has had an impact on lessening my overall stress. Granted, my overall contact duration with people in general has also decreased, but it's a welcome break for a little while. (I don't expect it to last too long since ultimately, I'm hoping to get accepted as a professor at an institution.) At least in the meantime, I can control my work environment to be the most comfortable - and productive - for me, something I haven't been able to do in a LONG time.

Granted, being home more now does have it's drawbacks too. My cockatiel has definitely been spoiled over the years, so unless he is standing on his favorite perch (my shoulder), he gets very "whiny," which has been driving me completely bonkers this week. I guess I'm just not used to him being as vocal as he has been because I normally leave my apartment for work very shortly after he sees me in the morning. Now that I'm not rushing out the door, he's very clingy, which makes it very hard to do any work around the apartment. Once I get my new laptop, it won't matter because I'll be able to work wherever I want: a coffeeshop, my apartment complex's club house... etc. Unfortunately, it won't be arriving for another month, so I'll be tethered to my desktop, with him sitting on my shoulder, a little while longer.

On a good note, I also got back into the swing of things (literally) with my exercise routine this week. Now that I don't have a full-time job that worked me to death anymore, I had no excuse not to work out. I could choose whatever time-slot I wanted, and have been aiming for the 9 a.m. or 4 p.m. slots, when I figure there will be less people at classes. (Granted, this week was the first week of the new session, so classes were pretty packed with people trying to meet their New Year resolutions. I'm looking forward to the next couple of weeks when the numbers will start thinning out...) I love being able to hit the kickboxing bag again and meeting up with classmates that I haven't seen for a while. Hopefully, I'll be able to get back to where I was before my hiatus from the past couple of months. It's been a wonderful release, although I do find that I have to get to classes super-early to stake out a spot at the front of the classroom so I can minimize any triggers around me.

On a different note... Earlier this week, I also corresponded with the founder of the UK Misophonia Foundation, who leads the Misophonia MeetUp group in London too. I figure I'll try to meet up with him while I'm in London for the misophonia fMRI study so I can learn more about how their support group works as well as finding out more about the UK MIsophonia Foundation. If all goes well, I'd eventually like to start a local misophonia support group, since I often read posts by people on discussion groups searching for a local support group in the US. Of course, I won't jump into such a major undertaking blindly. I want to find out what challenges are involved in such meetings and what works, what doesn't. In general though, it'll be good to expand my network of misophonia-informed people.
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Researching misophonia

1/11/2014

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Well, this was certainly a week of ups, downs, and changes. Of course, losing a job is never fun, but change can often have good outcomes. The last time I was laid off ended up in my moving to the Midwest and if that hadn't have happened, I never would have learned about misophonia. So, I am hopeful that things will start looking up (sooner than later).

It has been a big relief to not have to deal with being bombarded by triggers at my old office. My stress levels from work must've dropped considerably because I've been sleeping much more soundly and not waking up in the middle of the night at all. It's a very strange feeling to have more control over my environment, except for my cockatiel's occassional whining. As annoying as that trigger is, the good thing about it is that the sound also forces me to quickly leave the apartment and go to coffee shops or other places away from household distractions to write and strike off more things from my "to do" list. The time away from my apartment winds up being very productive for me.

What's also nice about not spending all of my waking (and sleeping) hours dealing with work issues is that I can focus more of my attention on promoting more awarenes about misophonia, researching info to broaden my own knowledge, as well as responding to readers' comments and emails (not to mention investigating potential opportunities in academia). I found a very interesting site that I hope may help open the doors to more misophonia research opportunities. It's called ResearchMatch! and it's a website where people can connect with various research studies - regardless of whether they have a condition or just want to be a part of the "control" group. It's a free site that was developed by major academic institutions across the country. Although my search of their studies didn't come up with misophonia, I signed up anyway and indicated in my profile that I'm interested in misophonia research studies. They assigned a URL to my profile so I can "campaign" for misophonia research studies; so, please take a look at the site (https://www.researchmatch.org/?p=c0a3787b), sign up, and forward the link along to others. I figure the more people that sign up for misophonia research, whether on this site or others, the more likely that researchers will see the need for misophonia studies.

So, spread the word. Let people know that misophonia is real and it needs to be researched!
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Bad news, good news...

1/7/2014

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Well... My gut feeling about last month's "review" that was not a review was right on the mark. I was laid off this afternoon. (Their actual words were that my "employment has been terminated." Bleah!) As bummy as it is to be laid off, I'm actually happy to be out of there. They expected me to do the work of three people with no additional dedicated help. I was completely set-up to fail. (I should've known when my two predecessors - who I was hired to replace - quit because they were overwhelmed.)

Anyway, as much as I liked working with most of my coworkers and helped design some fun projects, I'm glad not to be subjected to work triggers anymore. NO MORE WHISTLING! (YAY!!!!!) No more soda cans opening or silverware clanking on soup bowls. No more people chewing crunchy foods or tapping feet/fingernails/pens/etc in meetings. No more candy wrappers being opened near my area. But most of all... No noise of feet clopping on the floor above my head. Last week, I came into the office a little after 6 a.m. and was the first person there. The next person who came in walked through the lobby, proceeded to go upstairs but instead of going to the far corner of the room where his desk is, I heard [STOMP, STOMP, STOMP...] ten times above my head, like someone trying to get snow off of his boots. His desk is nowhere near the area above mine and instead of knocking anything off his boots at the entry vestibule like a normal person, I was bombarded with that racket from above. I swear he was doing it deliberately, knowing how sensitive I am to sound. (The whole entry area was dark except where I was working and we made eye contact when he started to go upstairs, so he knew I was there.) Whatever... As much as they tried accommodating my misophonia, the overall building's environment was not condusive for any kind of noise reduction. I pretty much had no hope there, on many levels.

But as I said earlier... All is good. I don't have to burn myself out anymore (to the point of insomnia or, when I could fall asleep, dreaming about work). I can go back to my dedicated workouts (something I stopped because I was so overwhelmed at work this Fall), maybe even do some consulting work so I can have better control over which (and how many) projects I take on. I'll definitely use this time to also work on my memoir so that, hopefully, I can finally wrap it up after my trip to London next month for the fMRI study. (Of course, over the next couple of weeks I'm going to have to be even more frugal than ever in preparation for the trip.)

Perhaps I will even take this opportunity to investigate other career paths. I've always enjoyed teaching graduate school students, in addition to speaking at professional conferences. I love seeing students achieve that "aha" moment when they get the concepts of the lesson. Their creativity and enthusiasm energizes and excites me. It makes me remember why I became very passionate about lighting design and 3D visualization in the first place.

Many people have told me I'd make a good professor, and I'll admit that during the past year and a half while I've been exploring my misophonia, I've come up with many ideas for potential misophonia research studies. Perhaps this layoff is a sign that I need to start pursuing that route...

At least I ended the day on a very enjoyable note. I had a very long hot stone massage already scheduled for this evening. (It was something I bought at the beginning of the year at a charity silent auction, but the car accident prevented me from enjoying it sooner.) It was very relaxing and just what I needed. Couldn't have picked the timing of that appointment any better - even though I scheduled it over a month ago!

Yes, 2014 should be a year of new beginnings and even greater possibilities... We'll see what happens!

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Winter tactile triggers

1/5/2014

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Brrrrrrrr... The one thing that struck me most about my move out to the Midwest is that, with the land so flat and not many tall buildings or forests, the wind chill really hits hard here. According to the local news station, it's currently 1° outside with a windchill of -13°. That's actually warm for the past week, and it's supposed to get even colder. Eek! It's this type of weather that really exacerbates my tactile triggers. Normally, certain silks - especially pantyhose or tights - are my biggest tactile triggers, but when the weather is this cold and dry, even fabrics that don't usually bother me set off my misophonia. I wind up having to slather lotion on my hands in the morning just to put on my regular cotton clothes.

I'm starting to plan for my trip to London next month, to participate in the fMRI misophonia study. I made sure that my passport is up to date (it's good until 2021) and checked to make sure I didn't need any visas or other extra preparation because of the study. (Although I'm doing the study for personal reasons, not business, I don't want any to mess around and wait until the last minute if I do need something special for the trip.)

I'm also glad that I bought travel insurance when I purchased my airline tickets. It may have been more expensive than I've usually had to pay, probably due to the fact that it's an international trip, given how many flights were cancelled with the snow storm that hit us on New Year's, and then shut down many flights in Chicago/Atlanta/NYC Airports as the storm moved eastward, I'm not going to mess around that something like that won't happen in February. I also made sure I'm getting there three days before the testing not only to give me a little buffer in case I do have flight delays, I want to make sure that I have plenty of time to rest up before the testing so that I have no residual jet lag that might affect the fMRI testing. Given that I lost sensitivity to triggers when I was on Tramadol after the car accident, and became extremely groggy in the mornings, I want to be at my most alert - or at least closest to my "normal" state of mind - when I go in for the testing.

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Happy New Year!

1/1/2014

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PictureA snowy New Year's morning
Happy New Year, loyal readers and new ones alike. I hope you all had a festive (or relaxing) holiday celebration to welcome in 2014.

I'm so happy to finally be able to put 2013 behind me and start 2014 with a fresh outlook of good things to come. As I mentioned in my last few posts, these last several weeks were pretty rough for me, but I'm looking forward to the new year as a fresh start like the fluffy white layer of snow that fell this morning. I'm not one for making resolutions; but I hope to continue (and get back to) many of the goals and efforts on which I started back in 2013.

Of course, I already know that my misophonia journey is going to have some major happenings this year.  Right off the bat, I'd like to share an article on the Psychology Today website where author Wendy Aron interviewed me for well-written article about my experiences at the Mayo Clinic last year that was posted this afternoon.  (Thanks Wendy!) It was that trip up to Mayo when I launched this website/blog.

I'm also gearing up for my trip to London this February to participate in the misophonia fMRI study. As excited as I am about getting the official go ahead to be a participant, knowing that I can do my part to help researchers learn more about misophonia, every now and then I think to myself, "I can't believe I'm actually going to be deliberately exposing myself to triggers in a situation where I have to control myself to remain completely still." I've experienced three MRI's over the past six and a half years with no problem, the most recent being last March when I had a 3D MRI scan of my brain. I don't have any issues with MRI scans. Usually, I just close my eyes and listen - sometimes to music but when that's not available, just to the different tones and patterns that the machine makes. Knowing that my reflex reaction to whistling is to instinctively put my fingers in my ears, it will be interesting to see how I feel/react when I'm exposed to triggers knowing that I can't move a muscle during the tests. Sometimes I joke to myself that if my reflex reaction is too strong, they may need to strap my wrists down during the tests. LOL! At least I know that I'll be there for a couple of days for me to decompress after the tests too, so I can take advantage of enjoying afternoon teas afterwards (a relaxing treat I've missed so much since moving to the Midwest) and maybe even go for a spa treatment or two to unwind.

Although I also mentioned in a previous post that I was thinking about NBF treatments at a local facility recommended by a friend, given how much I can already predict I'm going to be spending to travel for the London study, not to mention that I didn't get a raise this year or much of a bonus, I'm going to have to take it one day at a time when figuring out if I can afford to do that right now. I know that NFB usually requires multiple sessions and since NFB is excluded from my company's health insurance policy, I'll have to play it by ear whether or not I can pursue it as soon as I thought I would. (I was accepted into the study after having a conversation with the NFB facility.) We'll see how the year progresses and what new treatment revelations may appear as the months go by.

Of course, there's also work on my memoir which, if all goes as planned, I hope to complete soon after the London trip. Many people (including three agents) have already expressed interest in it and it's about time that I wrap it all up. (That's my biggest goal this year.)

I have so many other goals and ideas to help promote general awareness about misophonia, possible research topics, and other ways to help other sufferers and connected people alike - too many to list here - but as each thing comes to fruition, I'm make sure that I post it here first! Of course, I also need to get better about using the SenseHaven twitter feed more fully, but one step at a time. I want to make sure that I am walking steadily along the path of this misophonia journey, and not stretching myself so thin that I trip along the way.

With that said, I do want to thank all the regular readers who come to this site, as well as the new ones who join us along the way. (Welcome!) I consider you all a part of this journey for relief from misophonia (like Dorothy with an ever expanding entourage); and whenever I read comments in response to blog entries or even emailed directly to me through the Contact Form, your words energize me to continue this journey.

Best wishes for the New Year. I hope you all have a happy, healthy, and trigger-free 2014 (and beyond)!  :-)


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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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