Sophomore Year- Week 1

So far, everything has been pretty good and my teachers have been wonderful (knock on wood). We've watched a few movies, and every time they have either been captioned (knock on wood), or the teacher has told me in advance and worked out how I will get the information. My hearing has been great (knock on wood) and I actually went for a mapping before school started, but chose to stay on my old program. That's the first time I felt like I was hearing well enough that I didn't want to change to something new. The FM has also worked pretty well (knock on wood) and the teachers have been great about passing it around.

The workload hasn't been terrible (I'd say knock on wood, but your hand is probably getting tired), and I am so glad I chose the electives I did. While my friends are spending their time reading studying and reading for quiz after quiz for their AP elective class, I get to go around taking pictures for the yearbook! Obviously, once we have more pictures there will be more work in designing the pages, staying after school, going to outside events, etc. but I would much rather be doing this. I can't remember if I said this before (I probably did) but I am also taking a medical science class, which will hopefully lead to me securing a spot in a program next year where students get to observe doctors of all kinds as well as surgeries. We haven't started doing any in-depth learning yet, but I can tell it will be something that I will enjoy. We're also going to be learning how to use stethoscopes properly in the coming weeks, so if anyone has experience/ advice on using a specific brand stethoscope with a cochlear implant, please share! There is another person taking the class with CIs, so the school is looking into purchasing one. We'll see where that goes!

I turn 16 on Labor Day and will hopefully be getting my license soon after, as I have to take yet another test due to the crazy laws that Texas passed and put in effect starting with the teens getting their licenses literally a week before me. I would be grumbling about having such a borderline birthday, but if I had born a week earlier I would be a Junior, so I guess I can't complain! Here's to another good week!

Nucleus System 5- My Experience

Well, I finally got my new processors on Tuesday. When they say it takes 6-8 weeks to arrive, they're not kidding! I did get pretty impatient, but the important thing is that they did come. Here are some pictures... *sorry for the blurry quality. These were taken from my phone, since my sister decided to steal my camera, even though she has her own....sisters!*

On the left if my pink Freedom (the beige thing is the FM boot), on the right is my brown N5 with the pink cover.

Left---> Right Freedom, N5 with pink cover, N5 with blue cover.

Brown N5 on my head- side view. Please excuse the messy hair, I just put it up to take the picture :)

The remote...  I definitely think that's more of a personal preference thing. As someone who always has a cellphone in her pocket, it's no big deal for me to carry it around. It's pretty user-friendly once you take the time to figure out how to adjust all the settings. The only thing I wish they would add (possibly with future remote software upgrades?) is the option to have certain settings as "favorites" in the remote (similar to in a cell phone) that you adjust the most, making them quicker and more accessible to get to. Another thing is, it look like an Mp3 player. Or a cellphone. Or some combination of the two... What's the problem?

We're not allowed to use them in school, so I'm always completely afraid I'm going to get yelled at for having my "iPod" out in class, or even worse, have a teacher not listen to me and take it up. I don't adjust the settings too much, but I try to do it pretty discretely when I do- so far, so good.

AutoPhone- Would someone please enlighten me how the darn thing works? I know for a fact I have it, because my audiologist knew I wanted to try it out, and I saw her check off the little box for it. However, it's failed to come on every single time I've been on the phone (and I've used three phones- my cellphone, our landline, and my sister's cell). I  can hear better without T-coil than when I manually enable T-coil, so I don't mind it now working.. I just want to know if there's a way for it to work! My audiologist said it's voice activated, so the person on the other end has to have spoken for a few seconds before it detects it. No luck!

The view from behind- It's much, much thinner than the Freedom. I really like how I can make it stand out with the covers, or I can make it blend in completely. From the front, you really can't see any of it (my hair covers the earhook), unlike the Freedom, which was pretty bulky and noticeable from the front.

Battery Life- With the Freedoms, I barely got a full day of battery life, so I was worried that I wouldn't get very much out of the N5 (which use 1 less battery). The computer estimated that my right ear, which has a very strong map, would last 16 hours. It predicted my left ear, which has an even stronger map, would last 13 hours. Not quite a full day, but close enough. Yesterday was the first day I actually got to wear them all day (Tuesday- I didn't get them until my 9AM appt. Wednesday- I had French Honor Society inductions in the evening, and changed the batteries before  I went just in case, and Thursday I had a ton of reading to do and a very loud family, so the implants came off during my reading time). I put them on yesterday at about 8AM and I didn't get a single low-battery warning, even though I went to sleep at 12:30 AM. I'm pleasantly surprised that they actually appear to be lasting longer than my Freedoms did (weirdly enough, although partly due to my use of the FM boot on one Freedom). I know a lot of people really want the rechargables, but I never used them with my Freedoms, since they died during the school day, so I doubt I'll use the rechargeables for the N5 when they come out.

FM- There is not yet a boot released for the N5 for FM, so I have to use a neckloop with T-coil called the MyLink. While it's nice to have less on my ear, it's not exactly a fashion statement to walk around with a neckloop all day. I put the bottom part under my shirt, but I don't normally wear T-shirts, so a good portion is visible. I had to go a few days without the FM, and it made me realize there were come classes I really needed it for (French, my AP classes) but I also realized there were some that I could hear just fine without it. I think I may just "play it by ear" (heh..no pun intended) and only use the FM depending on what I'm doing in each class each day. When it's not in use, I can just take the FM off, so it's not a big deal.

Hearing- I was MAPped the same day I received the N5s, so my hearing is better than it was on Monday, but I don't know which I can attribute it to. I'll have to try out my Freedom again and see if I notice a difference, but I was told that, if I did, it would be pretty minimal. We'll see.

Funny story... I had taken off my FM neckloop in one of my classes, since we were just doing bookwork. The girl who sits next to me asked about it, and I lamented how I found it kind of annoying, but mentioned it was because I got new, smaller processors. I figured she's noticed since I'd worn my hair up the day before, but I lifted my hair up and pointed it out to show her anyway. "Ohhhh!" she exclaimed, "I was wondering why you hadn't wearing anything on your ears... I see it now!" 

just the usual

Bad blogger! Yes, I know. My sincerest apologies, sometimes life gets in the way! :P
So, what's been going on here?

• Saturday night- We got back in town, and I was off balance and dizzy. Deja vu? Yes.. only this time we drove, which made the whole thing pretty weird to me.
• Tuesday- Early in the morning, my left implant started aching a little bit, bu only if I pressed on it, so  I didn't think much of it. As the day went on, the pain became more and more pronounced. By 5th period, it was excruciating. Whenever I raised my eyebrows or smiled (which, I discovered, I do practically every five minutes) it only got worse, and my face expression turned would turn to a grimace. By 7th (last period), I hade to take my processor off. By the time I got home, my surgeon was closed.
• Wednesday- I got in the car, and my mom told me that she thought it was snowing. It pretty much NEVER snows here, especially not this early, so I rolled my eyes (what can I say, I'm a teenager!) and laughed. We pulled out of the garage, and shrieks of excitement could be heard from our car, as well as the constant buzz of my phone, filled with "IT'S SNOWING!!!" text messages. It, indeed, was snowing on December 2nd in Texas. It lasted for an hour, but it only stuck to the grass. No snowday off of school for us :( I took some Tylenol, and the implant pain was a lot less.

This is a picture of the snowfall in my town.
Credit: nbcdfw.com-taken by Todd Young
• Thursday- Finally, able to get in to see my surgeon. (Wednesdays are surgery days). It was barely hurting then, but I was still freaked out by the whole episode, plus the dizziness still hadn't gone away.  The verdict?
• He saw nothing concerning upon examining my head/implant, which is good. Upon looking at where my pain was, at the lower area (my surgeon called it the receiver) of the implant, he determined that it was from the processor rubbing against it and irritating it. My implant is pretty high up, so I found that surprising, but I think he knows a thing or two more than I do! He said that we just need to watch it over the next couple of months, see if it still bothers me, and that the only way to real way to fix it is to get the Nucleus  processor since it would be smaller and wouldn't rub on the site as much. (Potential insurance coverage argument? I think so!)
• He said he didn't really have an explanation for why the dizziness was occurring, and thought it was just a coincidence that it happened right after the trip. Dizziness is pretty common in all hearing loss patients, especially those who have had some type of ear surgery, so it's not exactly surprising to him. My surgeon gave me a 3 page long list of balance exercises to do which should help my balance improve. I haven't done any yet, but they're awfully interesting- how does standing on one leg with a cardboard box over your head sound?!

Yup, that's my ear. This was taken at a camp I went to this summer for kids with hearing loss.

We got a little excited about using the bling ;)

You can see where my implant/coil sits  in relation to my processor.(It's similar for both ears)

*I also got a mapping right before we left town. Now, both ears are at a processing rate of 1800. Battery life isn't great, but hearing is!

And, if you feel like watching an inspirational video that will surely make you teary-eyed, click here!

News, News, and More News

Sorry for keeping you guys in suspense ;) for so long,  I wanted to be certain of everything before I posted about it. Now I am, so read on...

I know a lot of people mentioned that external equipment can often be the source of having an unusual amount of trouble with hearing. Whether it be a dirty microphone cover, a damaged processor, a loose coil,- they all affect how you hear. In my case, I changed out all of the equipment and it made absolutely no difference in sound quality. If you, however, are reading this because you're experiencing the same problem, I recommend changing out all external equipment, just to rule it out before proceeding any further.

Mapping
So, last Friday (10/23) morning my orchestra teacher pulled me out at the end of class saying my mom had sent him an email that she wanted him to relay to me. I went into the office and read it- the Cochlear Rep woke up sick  (darn you, H1N1!) and wouldn't be able to make the appointment- did I still want to go to the audiologist? I wasn't happy about that, but I figured it wouldn't hurt to try yet again with my audiologist. I went to the appointment, and my audiologist told me that she felt like we were missing something and that a new set of eyes should look at it, but she wanted to try one last thing before giving up. It was either that or do some hearing tests, so I figured what the heck...

My audiologist decided to start from scratch and create an entirely new map- the same ol' measuring T's and C's just wasn't doing it anymore. My processing speed/rate on both processors has always been at 900, which is where most people start off, and usually stay. The processing speeds can range from 250 (on the oldest processors, mainly only used by people who have had their implants for years and years and don't like the faster rates) to 3600 (only available on the newest processors, but pretty much too fast for anyone to comfortably use.) My audiologist said that often times with her very elderly patients who aren't doing as well as you'd expect, as well as patients who had been Deaf all their lives, she moves the rate down to 500. The response is usually a sigh of relief, and an exclamation of, "Wow! That's so much more comfortable!" These patients usually find that things sounds "screechy" at 900.

So, how does that relate to me? Comfort wasn't the issue, but clarity was. My audiologist decided to take a leap of faith and see what would happen if we moved in the opposite direction, since I was having the opposite problem. So, starting with my (right) old side, the one I'd been having the most trouble with, she opened a new map with a processing speed of 1200. In addition,  she changed the pulse width. When I first got my implant, I needed it so loud that the C's (loud sounds) were going too high up,and there wasn't any room left move them. Instead, my audiologist had changed the pulse width so that the (excuse me if this exclamation isn't perfectly accurate, this is all from memory) electrode rang just slightly longer, making me perceive the sound as louder. This causes a huge drain in battery life. Since I'm now bilateral, I've been  slowly turning down the right ear, so my audiologist thought it would be safe to move the pulse width back to the norm. A higher processing rate also causes a decline in battery life, so my audiologist thought it was necessary since we were trying out a rate of 1200.

Okay,okay, enough with the technical stuff! Before turning it on, she warned me it would sound weird. It did. She turned it on, and all I heard was a buzzing. Like, if you accidentally had your processor on T-coil. I turned off my left ear and just listened- I could hear voices, but they sounded like they were coming down a long tunnel. My audiologist worked her magic, making the appropriate adjustments. I had no clue if I would like it once I got out into the "real world", but figured I had nothing to lose. Next, we opened a new map with my left ear, changing the processing speed to 1200. We had never adjusted the pulse width on that side, so we left it alone. When it came time to listen to the tones, I remarked at how different they sounded. It was the same pitches as if it had been played while it was at 900, but the sound was completely different. Imagine always hearing the note A played on the violin, and then suddenly, one day, it produced the note A, except it was the sound of a trumpet. Wouldn't you be baffled?

My audiologist attributed this to the changing of the processing rate to 1200. I asked her why it only happened on my left ear, and she shrugged. I knew very well that no two ears are alike, so I didn't think much of it. We made pretty much the same adjustments on that side, but this time I just wasn't so sure on this side, but wanted to try it out and see. Right after my audiologist saved the maps, I was getting ready to put my processors back on, grab my stuff and go on my merry way, when my audiologist got my attention said "Stop!" I looked at her.  She told me to hook up my left ear again. I looked at the computer, and noticed the map for my left ear on the screen. I soon realized what the problem was, why the new processing rate wasn't producing the same result in my left ear. The column that lists the processing speed said 500. It was accidentally changed to 500 instead of 1200-yeah, I bet that could make a difference! She remapped me at 1200, and all was right with the world!

Interestingly enough, this new mapping caused my battery lives on both ear to do a little flip-flop. My right ear, which always required a ton of power and had a battery of life of 12-16 hours with disposables. With the new map, it is supposed to give me 36 hours! That's a huge difference! On the left ear, I had only been using the FM on that side since it required less power. The battery life, formerly around 25 hours, is now only 16 hours. The FM still works with it, but I am guessing I could probably usually it on both ears now- I will have to look into that eventually.

And my actual hearing....what did the map do? Instead of rambling on for another 8 paragraphs :P, I'm just going to copy a facebook message I sent to my audiologist a few days ago after she inquired about how I was doing.

I think it's better! Everything sounds "right"...I can understand people and music sounds good again! About time ;) I was starting to forget why I listened to music in the first place. The left side sounds a little softer/far away, but I don't notice it with the FM on. I am happy and do not want to change a thing! (for now..)







Maybe it is one magical change after all?
 
And there you have it. Sorry, I have a lot more to write about (hence the news, news, and more news,) but this post is already way too long, don't ya think?!
 
Happy Halloween!

Good news is coming...

as soon as I have a spare few minutes to write about it! Stay tuned..
(Hint: look at the tags!)

In a Funk

When I need a mapping or have trouble hearing, my family is usually the first to notice. It's possible my friends notice too, but they just choose not to say anything :)
It starts out with...

• A significant increase in the number of times I say "what?"
• Suddenly needing things a lot louder OR
• Everything being painfully loud. Lots of shushing!

That's "stage one." Stage two is when I start to notice. Usually I notice the things I've already said, and

• I'm completely exhausted and worn out by the end of the day
• I get annoyed easily
• I snap at people at the drop of a hat (I'm normally quite friendly-honest!)

And that's how I've felt for the past few week-a month. It's not that my hearing has plateaued- I'd be fine with that. I feel like my hearing is declining, which is not okay. And it wouldn't be that big of a deal if I hadn't just had a mapping in which my level barely changed. Even my audiologist said she wouldn't expect much of an improvement, since there was pretty minimal change in my MAP for both ears.

So, what's the deal?

A) I have no clue
B) But it could be..

1. An equipment issue
2. A mapping issue
3. That I'm just stressed, so I don't have as much energy to put into listening
4. An internal implant/electrode problem (I highly doubt it)

I really don't care why, I just want it fixed. After a long (short, actually we didn't have school Friday) week of school, I want to be able to relax. Unwind with my friends. Do some serious retail therapy.

Instead I strain to follow conversations, and eventually give up and go into my own little world. I put on a a mask of sorts and going into autopilot- smiling, laughing when everyone else laughs, nodding along with conversations. It's like I've gone into a time machine and back two and a half years. Only difference is a new school and harder classes.

And it's just not fair to my family. I go home and take out my frustrations on them, the people I love most. I'm sure we've all done it at one time or another, but I come home tired, angry, and upset everyday. And they feel the emotions right along with me.

Two steps forward, and five steps back.

Sorry if you don't like the short sentences and bulleted lists. I thought I'd try out a little differently just for this post, it seemed to go with how I was feeling.

And no I'm not just going to keep complaining- I've got an appointment with my audiologist and the Cochlear rep on Friday. Cross your fingers...

Good, but...

In French class, whenever we do any sort of speaking test there is a rubric that we're graded on. You can be rated anywhere from a 0-5 on a variety of criteria. If you score a 3.5-4 on something, that means you scored in the "good, but..." category. As mature as my class would like to think we are, there is still a fit of giggles everytime the teacher says "If you have a good, but.."  (Notice what it sounds like when the comma is removed...) Anyway, it basically means you did pretty well, but there are some things that could have been better. That's how my week went.

For starters, there were no meltdowns, breakdowns, freakouts, or anything of that sort. It's been a relatively happy week.. Some of the material that I was worried about and having trouble with seems to have gotten easier. I really  need (another) mapping, so everything on the hearing front hasn't been too great, which doesn't really help when you're put in one of the noisiest hearing environments.  It seems like the people at the school are starting to understand what I'm getting frustrated with, and are willing to help- as long as it doesn't involve spending, and a very misleading thing called "educational need" is shown.
Unfortunately:

• A) Sometimes when you've done everything you possibly can, there's nothing left but to try a proven and well-known technology. If this isn't recognized very soon, there can and will be action on our part.
• B) My intelligence and ability to study for hours just to learn the material I can't hear in class shows absolutely nothing about my hearing ability. I wish someone (who makes these decisions) would understand that.

Sorry if that's vague, it's probably best that I wait to share more details until after the fact.

Believe it or not, my week was relatively stress free. I haven't been completely overwhelmed, and actually got something that I oh-so-dearly was starting to miss- SLEEP! My teachers have scheduled all of the hardest tests on this upcoming Thursday, so I'm planning on getting a head start on studying so I'm not a complete disaster come Wednesday night.

And for the but.. And it's a big but... ( no pun intended... okay, maybe...)

I've had the same violin teacher ever since I started playing violin over three years ago. I'm not talking about my orchestra director, but my private lessons teacher who I've seen for  half an hour each week to work on any pieces or techniques that I have trouble with, or want to get better at. He's been my teacher when my hearing was getting worse, when I decided to get a CI, was waiting to get my implant activated, watched as I changed and grew along with my hearing, and then my journey with my second implant. He loved to experiment with how well I could hear differences in pitches, and was usually able to tell if an issue I was having with orchestra  was a "hearing thing" or just one of my own little quirks, completely unrelated to how well I can hear.

For the past two Mondays, he hadn't shown up at my school to give me a lesson during my orchestra class (or for any of his other students). I figured he was sick, and didn't really think anything of it. What I didn't know was that he hadn't called the orchestra director to let him know he wouldn't be there, which was something always did. My orchestra director was starting to get worried, and on Tuesday went over to my lesson teacher's apartment and knocked on the door, but no one answered. He soon found out no one had heard from him in a while, and called the police. The police came over to the apartmet, and found that my lesson teacher had passed away in his home at least a week ago. He was fairly young, and relatively healthy.

That's all I know, I have no clue about the cause was or any other details. I'm still very much in shock, and it has definitely made me appreciate each day for what it is, because you just never know if tomorrow will come. I know it won't be easy to find another teacher who understands and is nearly as interested in my hearing journey. I am very grateful for the three years that I had him, and can definitely say I wouldn't be where I am today without him.

Birthday Girl

You may have noticed a small very significant change in my profile.

No?

I am now officially the big one-five. Yes, I am fifteen! That means that in a couple of days, I will be taking the test to get my learner's permit. It also means a sharp increase in my mom's panic attacks,

Kidding! Well, sort of :)

To celebrate, I went out to dinner with six of my closest friends and had a great time. We did plenty of reminiscing and some gossiping, and I still can't believe how fast we're all growing up. The restaurant was pretty loud and noisy, but my friends are even louder, so it wasn't too big of a problem! I am due for a MAPping, so I will be going in on Tuesday. I did just get a new one a couple of weeks ago, but it soon became apparent that it needs some tweaking. Whenever I need a new MAP there are number of signs that make it quite obvious to me and my family, but I will write another post on that later. Anyhow, I get to sneak a peek at the new Nucleus 5, so who am I to complain!

Note to self: Never think it's okay to eat a cheese sandwich for lunch the day of your birthday party. Lactose intolerance doesn't take a day off, even for birthdays! (yes, I learned the hard way...)

So, I'm posting this video although it seems to be about naivety (and naive is definitely not an adjective I'd use to describe myself), and there are other Taylor Swift songs that I like even more. So why am I posting it? Well, because it has to do with the two main reasons I'm writing this post:

1. Being fifteen
2. Taylor Swift

Taylor Swift? How could she possibly have anything to do with this post?

I know, I know- you're just dying from the suspense! ;)

Wellll, I got quite a few very nice birthday gifts. One of them I begged for hinted about months in advance...




TICKETS TO THE TAYLOR SWIFT CONCERT IN THREE WEEKS! *insert loud girl shriek here*

I love music. But if it's sung by Taylor Swift, that makes it about a thousand times better.

Can you tell I'm excited?