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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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Spring - A time for new beginnings

3/26/2014

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This morning while doing errands, I thought to myself how being laid off has actually benefitted my health lately. I dropped my bike off at the repair shop for a tune-up and when they asked how my century ride went (an event that was the primary reason for my getting a new bike from them), I told them that I had to drop out because of serious nosebleeds I was having not long before the race. Funny how, now that I'm not working for that firm anymore, my uncontrollable nosebleeds stopped and my misophonia trigger stresses have significantly dropped. (Granted, I haven't been going out as much either, but now that the weather has been getting better, that's going to change.)

I am sitting in a coffee shop now and I made a nice discovery this morning. One of the coffee shops where I sometimes go to work on my computer has a private room that can be reserved for just a $25 gift card purchase. I may start using it to have a place where I can focus on my writing away from the apartment.  One thing's for sure... Right now I'm sitting in another coffee shop by the window and there are a bunch of gnats that keep flying around me. Last November, when I talked about misophonia to my Toastmasters' club, I described the annoyance of misophonia triggers like being dive-bombed by mosquitos and other insects, a description to which they could completely relate. Well, I feel like I'm reliving that portion of the speech because even though they don't make any noise (which wouldn't matter since I'm wearing my earbuds now), they're so fricken annoying! I smush one and three more start flying around me. Argh! Oh, and even though when I first got here, it was so pleasantly empty in the café, I wound up having to switch sides of my table because two women sat at the table next to mine and one of them in my direct line of sight above my laptop screen wouldn't stop twirling her hair. I'm just glad I got here at a time when I had my choice of where to sit. Now, I'm facing the outside so the only thing in my view is the occasional car that pulls up to the drive-through microphone/speaker.

It's so nice out today. I see lots of robins looking for worms and buds starting to peek out on the trees. Granted, it's not quite the same as cherry-blossom time back in DC, but spring is spring and I'm hopeful that it will bring about new beginnings for me this year. I'm still waiting to hear back from schools to which I applied for professorship positions. I *so* want to get my foot in the door somewhere, especially if it can help me pursue some of the misophonia research ideas that I've been developing. Please keep your fingers crossed for me! I can use all the positive mojo I can get!   :-)


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Still talking about misophonia...

3/22/2014

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This past Thursday was a big day for talking about my misophonia experiences. Back in September of last year, I presented a speech to my Toastmasters' club as a way to introduce myself and to spread a little more awareness about misophonia. One of the reasons why I rejoined Toastmasters in the first place, after a seven-year hiatus,  was because I knew if I wanted to promote more awareness about misophonia to the general public (especially if there might be opportunities to be on TV or the radio), I really needed to brush-up on my speaking skills. I also knew that Toastmasters holds speech contests every year, one of which being an international contest where top speakers compete against other speakers from around the world. If I could do well and progress through the various contest levels, I figured it would mean that many more people would learn about misophonia.

Although my original idea for Thursday's speech contest was to use a much more abbreviated version of the speech I presented back in September, a couple of days before the competition, I realized I had a better idea of how to talk about misophonia in my speech... One with which the audience could better relate... And it worked! I won the speech contest at the Club Level and am now gearing up for the Area Contest on Tuesday, April 8th. From the comments I received after the competition, my strategy worked. People could really connect with what I was saying, and it seems one sentence stood out for everyone... When I commented that the motion of someone bouncing their legs or fidgeting out of nervousness would make me extremely anxious too. (I can say that I've been sitting here in a coffee shop for over a half hour and one person sitting two tables away from me has been bouncing her foot since the moment I arrived. It is so annoying!!! Thank goodness for having long hair to block that motion from my peripheral vision.)

The speech contest wasn't the only sharing of misophonia experiences that I did on Thursday. After the contest, I had lunch with one of my fellow Toastmasters and then hung out a little bit longer so that I could be interviewed by a student over Skype for a class paper he's writing. I was so flattered to get an email from him last week asking for the interview and although he said that it was only for class, not to be published, I figure if I can help anyone by talking about my misophonia experiences, I would never hesitate to do so. (I just usually ask to see the final write-up when it's done.)

He first asked me about myself in general and then we went into more detail about how misophonia affected my life... When did I first notice it? How do I cope with triggers? Have I done anything extreme to  prevent being exposed to triggers? It was interesting talking with him. Although lately I've done my share of thinking about misophonia in my past while I've been working on my memoir, there are some things that came out in trying to answer his questions that I hadn't thought about in a long time. I look forward to reading his paper when it's finished.

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Recounting my fMRI experience

3/17/2014

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I'm long overdue in recounting my experiences participating in the fMRI study in London last month, and I don't want you readers to be in suspense any longer... The fMRI study was a fascinating experience. Although I braced myself for the possibility that deliberately subjecting myself to triggers in a confined space where I was unable to "flee" would be akin to water torture, it was unlike my wild imagination assumptions... In fact, I've experienced three other MRI tests prior to this study and believe it or not, despite some of the sounds triggering my misophonia and making me temporarily uncomfortable, I was more miserable during the first one to check out a knee injury than I was for this study. (Granted, that was because my then boyfriend broke up with me the week before and when I told the technician that I like classic rock, she  put on a radio station that played back-to-back love songs the entire time I was being scanned. Talk about torture!) But I digress...

The first day of testing I found myself confronted with a potential Tube (subway) strike, so I decided to walk over to the facilities. It was a bit of a hike, so I didn't get there as early as I would've liked. By the time I filled out the forms, the researchers immediately started me with the hearing tests so that we didn't miss our scheduled time-slot for the fMRI. I was brought into a small room with a table, chair, and computer monitor. The walls, floor, and ceiling were covered with warm gray fabric, I assume to lessen any extraneous sounds. The researchers put sensors on my fingers, another sensor band around my diaphragm and then gave me a little four-button device to rank the sounds that I heard ("1" for no annoyance, "4" for the most annoyance.) They had me listen to a series of everyday sounds - each sound playing for about 3-5 seconds, during which time I had to focus my attention on a plus symbol in the middle of the screen. In the pause between sound bytes, the screen asked me to first rank how annoying the sound was and then asked how much that particular sound triggered my misophonia. There is a difference! Some sounds were very annoying but didn't trigger my misophonia. Other sounds triggered my misophonia big time! A few sounds didn't bother me at all. This went on for about 10-12 minutes, after which time one of the researchers would pop into the room to make sure I was okay.  After about five sessions of the 10-12 minute series of sound bytes, the researchers unhooked me from all the sensors and then we went over to the fMRI.

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Feeling like a taffy-pull...

3/13/2014

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Hi, everyone. I'm back. As you can imagine from my last few posts, a lot has been happening lately. Between my trip to London for the fMRI study, my mom/aunt's stroke, hunting for consulting opportunities while waiting to hear back from universities for full-time professorship opportunities, and a spur of the moment trip back to DC last week to meet with potential clients - not to mention pulling together information to file taxes - I feel like a Ping-Pong ball!

My mom/aunt is doing better. Found out she was transferred to a sub-acute rehab facility earlier this week. She's improved a LOT since the initial stroke, but she's still not well enough to be back at her home by herself. (My dad/uncle still works full-time.)

The trip to DC last week was pretty last minute. I had been trying to meet up with a potential consulting client for nearly a month before my London trip and when I got back, she asked if I was planning to go to a design event held last Thursday, something I used to attend every year when I still lived in the area. Although I hadn't planned to attend, I figured it would be an ideal event to not only meet up with the client as well as reconnect with other colleagues with whom I might be able to do consulting. All-in-all, a very worthwhile business trip.

In addition to work related errands in DC, I was able to take a side trip to meet up with Judith Krauthamer, the author of "Sound Rage," with whom I have become friends not long after her book came out. We had a lovely discussion catching up with what's been happening over the past year, as well as my experiences with the fMRI study. I'm not sure how it came up in our discussion, I think we had been talking about the lack of misophonia awareness by medical practitioners, but I commented that although I saw a therapist for nearly seven years (starting around the time of 9/11), I really never brought up any issues of being annoyed by sounds, visuals, or certain other stimuli. There was so many other things happening in my life - such as a bad boyfriend break-up, being laid off for the first time, and minor health issues - that had been causing so much stress on my life that I never thought to bring up sensation sensitivities as another stressor. I just thought my being sensitive to sound and visual triggers was just a weird quirk for me, not a medical issue that needed to be discussed with my therapist. I wonder how many other people with (misophonia-related) sensitivities don't feel it necessary to bring them up with their medical provider...

I did reach out to my therapist while I was in DC, just to see if she received the copy of "Sound Rage" that I sent back in October. We talked a little bit over the phone and she agreed that I seemed to have other things on my mind that took precedence over any trigger annoyances that I may have been feeling at the time. She did remember one occasion when I mentioned an incident where I asked a guy on the metro platform to stop clanging his ring on the handrail and he just kept doing it more. Other than that, sensation triggers never came into our discussions. 

As much as I'd like to update everyone about the fMRI study experience, I feel that it'd make this blog update WAY too long. Hopefully, I'm going to be "grounded" for a while, instead of running around like a chicken with my head cut off, so I'll try to post the fMRI experience within the next couple of days. (I definitely don't want so much time lag between posts and website updates.) Which reminds me... For those of you who haven't noticed, I added two more pages to the SenseHaven.com website:  Potential Coping Tools and links to Other Misophonia Blogs. Please let me know if you have information to contribute to those pages. (The only request I have for links accepted for the misophonia blogs list is that you in turn link back to the SenseHaven.com website.)


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    About the Author

    Emlyn Altman has been suffering with misophonia for over 40 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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