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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

Long overdue update

2/22/2014

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I apologize for being offline for so long. As you can guess from my last post, it's been a whirlwind of a week. I do appreciate so many of the warm wishes of support that I've received from friends and general blog readers alike. It really means a lot to me!

To start off, I'll just say that my aunt/mom is a lot better than she was when my sister emailed me on the 13th. (My family and the doctors weren't sure if she was going to make it. From what I understand, it was the worst possible stroke a person could have (the clot was in her basilar artery), but the circumstances couldn't have been better when it happened. She was already in the car with my uncle/dad when it happened and he took her to the ER in record time. That particular ER location has a stroke unit in the ER 24/7 and the top stroke physician was on call that evening.) She still has a long way to go, and it's very difficult to see someone who is not only the strong matriarch of our immediate family, but also a central pillar connecting all of my relatives around the world, weaker than I've ever seen her. All I can say is that I am very thankful that she is doing better and is in a rehab facility now. She is truly amazing. Despite a little confusion with certain memories and some muscle weakness, she is very quick when it comes to making jokes. She frequently cracked up everyone in the room with some of her quick and witty quips.

I could probably write a tome about all the things that have happened over the past week, but I think I'll do it in drips and drabs rather than in a 10-page blog post. I'm still a little tired from the past week of traveling. The airline wouldn't let me change my flight from London to go straight to my family in NY. They made me go from London to my original end destination in Iowa and then I had to purchase a whole new ticket to go from Iowa back to New York. Then when trying to get back to Iowa on Thursday, all of the flights going to my end destination were cancelled due to blizzard conditions after I had already made my first leg to Atlanta. I'm not kidding! ALL of the hubs around the country were completely booked back to my final destination even the next day, so I wound up flying from Atlanta to Omaha and drove the rest of the way.

So, please hang on a little bit longer for more updates while I get settled. I do have a lot of misophonia updates to share: The fMRI testing experience, some of the research articles and other information I learned about from the researchers and other misophonia sufferers, even my experience flying back from London which, despite the circumstances, was a heck of a lot better than my experiences with the snide sorority "beotches" on the way over to London. (Let's just say that the cabin going back to the States was less than half full, and absolutely no one was sitting in the rows behind me. Yes, I meant that... The entire 4-5 rows behind me were empty! It was pure heaven!)

To be continued...


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Devastating news after final fMRI test

2/13/2014

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Today was the second (and last) test for my participation in the misophonia fMRI research study. I was actually feeling quite good about it afterwards (despite being stressed with the triggers thrown at me during the tests) and couldn't wait to post some of my experiences here while enjoying a relaxing drink at the hotel bar. Unfortunately, I'm going to have to ask you all to hold on a little bit longer for that update...

When I got back to the hotel and checked my email, I got an urgent message from my sister who said our mother (my biological aunt, for those of you who read my earlier post about my parents passing away) had a major stroke last night of the most serious kind. I've spent the past 2+ hours trying to figure out how to change my original Sunday flight back to the Midwest to an earlier flight that will get me to NYC sooner. Of course, the Delta toll free number doesn't work outside the US and the Delta number for the UK is only 8 a.m. - 8 p.m.  and I unfortunately tried calling them at 8:15 p.m., just missing them. Argh!

So now I feel trapped here on the other side of the Atlantic, not knowing if my mother is going to hang in there long enough for me to get home (whenever that will be). On top of that, from what my sister told me, NYC is currently in the middle of a blizzard that's supposed to drop nearly two feet of snow. I might not even be able to come home sooner than Sunday. All I can say is thank goodness I got travel insurance. I only purchased it thinking that the snowy weather in February is so unpredictable (and heavy) this year; and I didn't want to risk missing a flight due to weather delays or cancellations. I never in a million years thought that I would need to cut my trip short because of a family medical emergency.

This is going to be a LONG ten and a half hour night waiting for Delta UK to open their phone lines again...
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Meeting up with the UK Misophonia MeetUp group

2/10/2014

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Blimey, mates. I can't believe I'm actually here in London! Somebody pinch me!!!

For those of you who saw my Tweets (yes, this website does have a Twitter feed at @SenseHaven), my optimistic predictions of having a "trigger-free" experience in business class for the last leg of my flight here was short lived. Of course, my seat was directly in front of a half dozen obnoxious sorority girls. (They must've been alums, because they were too old to be still in college.) The girl behind me was talking extremely loudly to the girl sitting diagonally behind her. I couldn't imagine that their carrying on wasn't annoying to other people besides me. Unfortunately, the Midwest spoiled me with people's kindness and understanding about my misophonia (or my judgment was impared from lack of sleep) because before the plane took off, I asked the girl behind me if they were planning to talk so loudly throughout the trip. (Big mistake!) I explained that I have a condition that makes me sensitive to sound and even with my earplugs in, they were being very loud. Although I asked her calmly and politely, the girl behind me was rude and dismissive. Besides telling me to wear headphones, she offered me a Xanax. (If this were the 80's, I'd say she was telling me to take a "chill pill.") So much for people being understanding if the message is delivered politely...

I pretty much ignored them during the 5+ hour flight. My headphones are really good, so between blasting my music during take-off and watching movies until touchdown, I didn't hear them at all. (I probably should've kept my mouth shut and waited to see what happened, but I figured it was easier to approach them before the plane took off than during the flight. Oh well... Live and learn.) I'd say that the situation resolved itself but no such luck. When the plane landed and people were debarking, I decided to take my time gathering my stuff. (We landed an hour early, so I was in no rush.) Of course, the sorority sextet had a similar idea, or they were deliberately hanging back to be obnoxious. Why do I say that? Because no

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Tally ho! On my way to London!

2/8/2014

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I can't believe the trip for the misophonia fMRI study is finally here! It seems like yesterday that I was officially accepted as a participant to the study. (In actuality, it's been a good couple of months.)

Even though my tests for the research study don't begin until Wednesday, I wanted to arrive in London a couple of days early, not only to give myself a travel buffer in case this insane/unpredictable winter weather might delay or cancel any of my flights (I have three legs going over to the UK), I also wanted to give myself ample time for my body to adjust to the time zone difference. The last thing I'd want to happen is for any jet lag to impact my brain's ability to function and give false results for the tests. (I already know from the aftermath of last year's car accident, when I was completely loopy on Tramadol, that a delirious mind is much less sensitive to triggers.) I even got up super early so I could try to get on a 7 a.m. flight instead of my original 11:15 a.m. flight. I succeeded in getting the 7 a.m. flight, but unfortunately was unable to get on an earlier flight for the second of three legs. Oh well. At least I had no problems making my last leg, which was the most important one.

Trigger-wise, it's been the same ol' stuff when it comes to traveling, except this time I'll be continuously traveling for almost 24 hours! I constantly see anxious people waiting for their flights, bouncing their legs/feet or fidgiting with objects. When debarking from my first leg, the guy directly behind me started to whistle very loudly in my ear, so I quickly stepped aside on the gangway connecting the plane to the terminal to let him pass me. I also had to ask one of the flight attendants to not lean against the back of my seat as she was monitoring people pass her into the rear of the cabin. She was very apologetic when I said that I was sensitive to the bouncing of the seat back as she leaned against it. I think if I had snapped at her instead of asking her politely not to lean against the seat, the situation might not have been as pleasant, but as I've mentioned in previous posts, I still believe it's all in how the message is delivered.

As much as I'd like to take my usual long afternoon nap when I arrive in London (my typical routine when traveling eastward on trans-atlantic flights to adjust to the jet lag), I'm only going to be able to take a quick cat nap after checking into the hotel because a couple of hours later, I plan to attend the UK Misophonia MeetUp group. (I've already warned the others that they'll need to have toothpicks ready to prop up my eyelids.) It will be interesting to see how their support group works, especially since the meeting is being held in a pub. (Maybe getting drunk helps dull the senses like my Tramadol did. LOL!)

Anyway... I've got to head over to the gate for my last leg. I'll do my best to post updates while in the UK, but I don't know what kind of internet access I'll have. If I can't get online, I'll try to post new blog entries as soon as I get back into the US.

Cheers!

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Counting down the days...

2/6/2014

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I'm so excited. My trip to London for the fMRI study is coming up fast! So much to do still and little time to do it. Have to figure out what to wear/pack for the trip. I'm looking forward to much warmer weather. It's kinda strange to say that London's 40's/50's degree weather is "warm," but considering I'm dealing with single digits without the wind chill here in the Midwest right now, I feel like I should bring a bathing suit for the trip. LOL! (I actually am bringing a bathing suit, but just for the hot tubs etc. at the spa where I'm treating myself to a bit of relaxation after the tests.)

This was quite an interesting week. Since I'm not working (other than the job-search efforts and preparing for the trip), I decided to go to the movie theater across the street from my apartment to see the latest Hobbit movie. (In the 2+ years that I've lived here, I had never stepped foot in the 20-plex.) I figured that between it being an "early bird" morning showtime (10:50 a.m.) of a movie that's been out for a while, not only would I save a few pennies, the theater should be practically empty. I wasn't wrong. I got there just as the previews were starting, which was great since I could scope out the ideal place to sit away from everyone else. There were only six other people so I sat in the center of the section in front of them. I experienced no triggers, other than an occasional crunch of popcorn or whisper behind me (which wasn't often), and didn't even have to wear my earplugs or let down my hair "blinders." It was the most enjoyable movie I've seen in a LONG time. Granted, it wasn't until after I saw that movie that I realized I've been missing out on taking advantage of the mini theater my apartment complex has at the Clubhouse. I could've been watching movies privately sitting in the plush theater seating with no triggers at all. Silly me. I'll definitely be taking advantage of those facilities when I come back from the trip.

I read something this morning saying that 20/20 is doing a report on hyperacusis tomorrow (Friday, Feb. 7th) at 10 p.m. (9 p.m. CST). Since they already did a report on misophonia a couple of years ago (which was the report that a stranger on a plane told me about when she introduced me to the term misophonia), and since hyperacusis is somewhat connected with misophonia, it wouldn't surprise me if they refer back to that earlier report. It will be interesting to hear what new information they show.
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Happy Groundhog and Superbowl Day

2/2/2014

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According to folklore... Since Punxsutawney Phil (the famous groundhog) saw his shadow this morning, winter is predicted to last another six more weeks. Given how unusually cold it's been this winter (and we've only just began February),  that's going to feel especially long. I looking forward to the change over to springtime weather whenever it comes.

"Change" in general is something I've thought a lot about lately. I think many people resist change out of fear of the unknown; and yet, if there's one thing my misophonia has taught me is that sometimes change is a good thing. If it weren't for my move from the east coast to the Midwest (a HUGE change for me, given that I had no friends or family out here and the furthest west I've ever lived prior to the move is Washington, DC), I never would have met the stranger on a plane who introduced me to the term misophonia. What a life changer!

Now I'm looking to make another huge change for me - a career change into academia. This last job was the final straw in over seventeen years of being unhappy from one architectural firm to another. The more

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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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