Thanks For Giving

The fundraiser was a success. Altogether, adding what was donated through Sweet Frog and what was given online and in cash for my medical needs, $550 was collected. THANK YOU!

This fundraiser paid for one visit to my doctor in Chapel Hill about two weeks ago. (Yup, he’s ridiculously expensive, charging around $280 per visit with him, not including the cost of supplements.)

I’ll have to decide whether to start more fundraisers. I’m honestly too tired right now to consider it. I’d much rather work for the money. My dream job for this season of my life would be to work for Firefold, a company that repairs computers. Please pray that God will open the door for me to work part-time while I’m in school full-time. I do need money to pursue further help for my medical problems.

Here’s an update on my health and needs.

For over a year now, I’ve been hypersensitive to sounds (especially higher pitched sounds). I don’t enjoy playing my flute or piccolo anymore because they are high-pitched, my shoulders hurt when I play, and my vagus nerve isn’t working well so it’s hard to breathe deeply enough to play well. Worse, however, is the impact this has had on my daily life and relationships. I don’t eat with my Potter family anymore because the sounds of the utensils on the plates is unbearable, even with noise cancelling headphones. I wear noise cancelling headphones most of the day because four of Gina’s five kids are home for the summer. The noise of the laminate floorboards cracking as people walk across the floor anywhere in the house is also hard to tolerate. I’m barricading myself in my bedroom. I love the people I live with; I just don’t love their noises. The ice machine in the refrigerator, the squealing of the van’s belt, the sound of running water in the kitchen or bathroom, the squeak of the back door as it opens, they way people pronounce their “S’s,” the dribbling of a basketball outside on the pavement, the squeal of the school bus brakes (6 times per day because there are three busses in my neighborhood) and did I mention the glass dishes and silverware?

All of these “normal living sounds” cause discomfort. It takes all of my will power not to lash out at people who make such noises, even though my rational brain tells me that they are being normal humans and it’s ME who is messed up. So, instead of risking blowing up at anyone, I retreat to my bedroom, where I still feel like everything is simply too loud.

Just a few days ago I saw an audiologist because I felt like I couldn’t manage this hearing hypersensitivity anymore without help. Melissa Karp was able to run me through several hearing tests and quickly identify that I have hyperacusis. She charged me a reasonable amount for the evaluation and knew what we need to do to help my brain repair itself.

You see, hyperacusis is an auditory processing problem in the brain. My ears themselves aren’t damaged, nor are they any more prone to damage than yours are. However, my brain has decided that to crank the volume up to 12, and therefore I perceive the sounds I hear as extremely loud. My audiologist placed me in the “severe” category. At least I’m not “extreme” yet – the last level on the chart.

She recommended that I begin Tinnitus Retraining Therapy (TRT). It’s not just effective for tinnitus sufferers; it’s also effective for hyperacusis. It involves wearing sound generators that look very much like hearing aids and cost about as much – normally between $1,500 to $3,000 PER EAR (and like most people, I have two ears). The company that manufactures the sound generators understood my income dilemma and has cut the cost significantly, and Vocational Rehabilitation may be able to help with the cost as well, but I’m waiting for a final verdict on all of that.

Meanwhile, I’m not supposed to use my noise cancelling headphones at home (though I still do because it’s just too loud and I’m battling migraines from sounds around me). I am participating in a sound enrichment protocol and listening to white noise all night in an effort to comply with the instructions I was given so that this condition doesn’t get worse.

TRT takes a while to work. Most people don’t seem to experience improvement for at least 6 months to a year after they start TRT. There’s no pill or quick fix to this one. The cause of the hyperacusis, my audiologist suspects, is a brain that is “on fire.” Just as my other senses are hypersensitive – to touch, light, texture – so now is my hearing.

I need a cure. I want to work a job. I want to do good to those around me. Please keep praying for me.


2 thoughts on “Thanks For Giving

  1. Sarah:

    I have just read many of your articles and posts. Thank you for sharing your life with us all.

    I belong to The Hyperacusis Network, have been for about 4 years or so. I understand the condition; I understand your heart. Even though I do not have CRPS or RSD, I do have Meralgia Paresthetica, which is taxing on me, waxes & wanes, but like you, I do my best to survive our unique infirmities. (I recently broke the fifth metacarpal in my right hand, and just came out of 6 weeks being casted and have some nerve issues to deal with, but seeing a physiotherapist)

    Your great and wonderful attitude and will to survive, is like none else that I have read, in a long, long time, including your posts on The Hyperacusis Network.

    Some who write there at the Network, do so (sometimes) out of a spirit of “not-knowing-all-the-facts”, or “what-has-worked-for-me, will-be-good-for-you”; we just have to beware of that mindset and of such cavalier.

    But what MOST impressed & inspired me, was your non-compromising faith in Jesus Christ. That my dear, is clearly seen.

    I to am a Christian, and have made my career in Christian radio broadcasting; 35 years to be exact, but the hyperacusis has taken it all, pretty much away. Indeed, those “S” sounds do hurt and make that treble knob, so devilish looking. Still, your commitment to God, and to those around you, has deeply moved me Sarah.

    May you be touched today, with the love & mercy that only He can give…to our broken hearts.

    Your brother,


    • Hi Anthony! I actually recognize you because of a Vimeo video I saw about Hyperacusis where you were featured. The video really touched me and I felt glad, not that you were suffering, but that you would share your life with us and your faith and prayers for your friend. I am so grateful that you reached out to me. I’ll send you an email tomorrow. (Tonight I have to get to sleep.) Thanks for your encouraging words.

      Gutsy Girl

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