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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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Happy New Year!

1/1/2014

3 Comments

 
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)!  :-)


3 Comments
Jim
1/1/2014 03:14:40 pm

I think of your Mayo experience whenever I have a ham sandwich for lunch. All that expertise, and they just can't cut the mustard.

I hope London is a more positive trip. I like traveling by Underground - no one ever gives you a second look for having headphones. Make sure you visit the Tate.

Reply
Emlyn
1/5/2014 01:32:39 am

LOL!!! Too funny! Well, hopefully my visit there, as well as subsequently sending the neurologist a copy of Judith Krauthamer's "Sound Rage" book, will inspire Mayo to study the condition further for future patients.

I'm really looking forward to London (despite the fact that I know I'll be deliberately bombarded by triggers during part of the trip). I am definitely visiting the Tate again. (I went when I was 16 and one of the exhibits wound up inspiring a series of my own sculptures). I do plan to use the Underground a lot too. (I deliberately found a hotel that's not far from the Underground so I could take it to/from the testing as well as for my own explorations.)

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Marija link
1/7/2014 08:54:09 pm

Happy New Year! :)

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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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