The Bionic Sound Project

this girl’s journey to sound

Stressing about Monday Saturday, August 5, 2006

So the last few days I’ve been feeling icky. At first I thought I had an upset stomach due to going out to eat the other day, but that wasn’t it. My stomach is just in knots and all tight and achy.

Today Mom asked me if I was still feeling sick, and then asked if I was stressed about Monday. Hmm…maybe that’s why I feel sick…because I am nervous about Monday. I really need to learn how to manage stress and anxiety.

I don’t know what to expect. I kind of wish I could get it over with, but all the anticipation and buildup towards the activation is kind of exciting. But at the same time, no longer will I be able to wonder and dream about what it will sound like, because I will KNOW and have it on my head and using it.

It’s a conundrum.

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The prevalence of CIs over Hearing Aids. Wednesday, August 2, 2006

This past weekend was interesting. I went to Deaf Professional Happy Hour on Friday night to meet up with some old friends from school, as well as other people who live here in this area. Saturday was a big pool party that was a combination fundraiser for the traveling deaf softball team and a goodbye party for two deaf girls that were going off to grad school.

The most interesting part of it was that in the group of people that I was talking to, everybody but two had cochlear implants. It’s amazing how many people have been getting implanted, especially within the last 3 years. We were all trading implant stories, and so far, I’m the only one who had a bad time with the surgery/had to have it twice.

I remember the days when meeting a person who had a cochlear implant was something that was somewhat rare and unheard of. In fact, the first time I had a friend with a cochlear implant was my freshman year of college. In 1997, I worked at the oral deaf school that I attended when I was a little girl. I was a counselor for their summer camp program for deaf kids and their siblings. It was amazing, the number of them that were implanted and doing extremely well with their implants, as compared to my generation (at the time) who were still hearing-aided.

The other funny thing was that when I met up with P.J. on Friday night, we found out we had the same doctor, and were comparing notes. He asked me if i was “that girl who had a problem with her implant and had to have surgery twice” and I asked him if he was the “young man who reacted strongly to being activated due to one sound he had never heard before in his life”. The deaf community is way too small, with all of us going to the same doctor, haha.

P.J. was telling me about his post-activation experiences, and all the sounds he was hearing at the bar (that I couldn’t hear/pick out with my new digital hearing aid), and I was very impressed. He also told me a funny post-activation story about when he came home, and he heard this “ding ding ding” coming from around the house, and stopped. It kept coming and going, and driving him crazy. Finally he asked his boyfriend what that noise was, and his boyfriend told him that it was the bell on the cat’s collar. P.J. said that he wanted the bell removed from the cat immediately. It was funny how he told the story.

Found another website that is geared towards wireless accessibility. Sent an email off to Nokia to find out about their phones and the difference between HA+CI compatibility. It’s frustrating because some of the websites, like Motorola, have no information on accessibility, nor can I send them an email without being a Motorola customer.

 

Post-Surgical Tinnitus, playing the piano, and Music

Still suffering from post-surgical tinnitus. Mom thinks it’s the fluid moving around in my ear, and that it means it’s healing up (which it better be, since it’s only been 2 weeks). My observation is that it gets worse when I bend over or move too fast.

It’s like a rushing, roaring sound, almost as if a jet plane is taking off inside my head…but it’s so odd, when you only hear it on the right side…so used to hearing sound bilaterally…will be happy to get the CI activated and hear ACTUAL sound instead of imaginary noise. And then there are times when I get the noise, and it makes me want to shut down completely for fear of passing out, because it can be very overwhelming. Just a few more weeks and hopefully it will go away along with the feeling of imbalance.

I find that the more I move around now, the better I can train my brain to get past the “unbalanced dizziness” feeling, and start feeling more normal, instead of resting up in bed. My energy level is also starting to come back, which is nice because I’m tired of being a slug. Just gotta finish the X-Files by the end of the summer!

As for residual hearing, I still have yet to hear anything, but I have been trying every now and then. I’m afraid of thinking that I can “falsely” hear it, which is kind of hard. I have a “memory” of what I sound like, so if I talk, I can trick my brain into thinking it hears myself speaking.

I’ve also started playing the piano again, and I really miss it. I’m amazed at how well I’ve been playing, for somebody who hasn’t touched it for about 2 years. Maybe I should start taking lessons again. Now I wonder how the piano will sound after I get the CI on.

Here’s the info on what to look for in CI-Compatible Cell Phones, located on page 4.

I’ve already started making a list of CDs I want to listen to after I get the CI activated and can listen to music. I know I’m definitely going to buy Christina Aguilera as my reward, because it’s CHRISTINA!

Jun 13 – The Futureheads“News And Tributes”
Jun 27 – Billy Talent“II”
Aug 15 – Christina Aguilera“Back To Basics”
Sep 12 – Basement Jaxx“Crazy Itch Radio”
Sep 12 – Justin Timberlake“FutureSex/LoveSounds”
Sep 26 – Janet Jackson“20 Years Old”
Oct 03 – The Killers“Sam’s Town”
Oct 24 – The Who – “Who 2” (maybe)

Just 5 more days.

 

Actual Implant Surgery Video! – *GRAPHIC* Sunday, July 30, 2006

Actual Implant Surgery Video – WARNING: GRAPHIC

And just because I *had* to…(thanks to Jen)




 

Cochlear Implant Surgery #2 Diary and Photos Wednesday, July 26, 2006

Here are the pictures and the diary of my experience from Cochlear Implant Surgery #2, that I’ve been promising to post for awhile!

Link to Surgery #1 diary and pictures (July 10-12)

 

In the car on the way to the hospital for cochlear implant surgery number 2!

Tuesday afternoon, the results of the NRI test and CT scan determined that I needed to have surgery again to fix a minor complication with my implant (easily corrected). I am the first patient EVER in all of his years of practice to have this problem. He’s heard of it, but he’s never seen it happen, so it was kinda cool being a doctor’s first case. He definitely won’t forget me!

However, I felt bad because everybody at the office was waiting for us to come back from the CT scan till after closing hours, because they needed to see the results on whether or not surgery was needed, which I wouldn’t find out until the next morning when Myrna, the secretary/coordinator, came in.

Wednesday morning, 10 minutes after they opened at 8:30, everything was in place and all set to go. I was going to have surgery at 5:30 pm on Wednesday afternoon, same hospital as my first surgery.

(more…)

 

whiningness within Saturday, July 22, 2006

I’m sick and tired of sleeping on my left side. My left hip and ribs hurt, especially my ribs. Ugh. Still can’t sleep on my right side yet, and even if I could, it’s not comfortable.

The other problem is that either I’m too far from the TV and can’t see the captions, but am comfortable, or close enough and not comfortable. My glasses broke the day before I had surgery, and they can’t be fixed, so I have to get new ones. First I have to get all healed up, because the pressure from the arms hurt my incision, and trying on demo models in the store…eeeeeeeew germs, eeeew.

And why is it just when I finally get comfortable and can see the TV, it’s time to change the disc in the DVD? I’m now on disc 1 of season 5 of the X-Files (four 45-min eps per disc), and am enjoying re-living every minute of my shippy-ness.

And could somebody tell me why ONE pill costs close to 14 dollars? For 7 pills of my antibiotic (Levoquin), the list price is $96.11. I am so grateful for the medical insurance we have, because I only had to pay $25 out of pocket.

Ok, I feel better whining. I want to get online tomorrow, hopefully. I need human voices!

 

Saline Solution, Phones, and Activation

Losing 7 pounds in one day is really weird. Gotta love IV saline solution puffing you up like a balloon, and then getting it all out of your body with frequent trips to the bathroom. My mom is nagging me because she’s worried about me screwing up my electrolytes + potassium levels.

I’m about to give up on my phone, because I’ve sent text messages and am not getting responses back from people. Some said they sent me messages when I was in the hospital, and I have yet to receive them. I kind of wish I knew if I can use a real phone or not, so I could decide what to do with this phone. At least I know the email is consistent.

I’m excited about my implant activation date, and have already started a countdown to it. That is, only if my doctor says yes. I have to see him for surgical follow-up on Wednesday, and then again just right before I turn my implant on. I’m still on track for my activation date, despite having surgery twice, which is a big yay for me.