"Never Mind"

I was regularly checking my facebook feed when I see this shared post about two words that should never be said to a hard of hearing person. Most, if not all, hard of hearing people likely already know the two words before they even read what the person was referring to. They are "never mind."

Here's a link to the opinion piece on Times Colonist. I could not have said this piece better than the author did. In fact, after I read the first few paragraphs, I thought someone stole something I had written in the past! The girl has an extremely similar background to me- by when she became HoH, her use of hearing aids and the FM Trainer in schools and constant annoyance of people saying "never mind" to her when she asked them to repeat something. She really hits it home about how rude it is, without actually acknowledging that it's rude. We just find it insulting; as if we're a burden for needing you to repeat something! The image above is quite frankly, what I feel when someone says it.

I also like that she mentions how hearing for us, is not passive. It takes us a lot of effort and the results can be tiring. At the end of a day, there's nothing more pleasant than being able to take off the hearing aid(s) and/or cochlear implant(s) and being able to relax in silence. For those of us that also have to lip read, it's nearly twice as tiring an effort to listen with the ears AND eyes. I actually found myself developing tunnel vision today when I was so focused on lip reading my boss for 10 minutes. And that was ONLY for a 10 minute conversation. But that's how much work it took me to try my hardest to hear and understand every single word he was saying. As opposed to the half-assed effort I usually surmount myself to in order to prevent myself from wearing out too fast.

Most people don't realize this, even those that have been in my presence often in the past, but I get suddenly tired when I'm around people in social situations when I wasn't even tired before I arrived. This is due to the communication wearing me down... really fast. Shortly after I arrive, I start to disappear to hog a TV or read a book or something. I realize people might think this is me being rude, but it's really me trying to save myself from passing out in a coma of exhaustion. I just canNOT keep up with that much communication, especially if it's a room full of people. And to make it easier, no one really tries to talk to me anyway. I'll spend half of my energy keeping alert in case someone wants to talk, but then, nope. I get it, I'm awkward and quiet and when you finally do ask me something, my answer is probably five words and not all that entertaining. (Which, really, if that's the case, you probably shouldn't ask such a question. I'm not a comedian). But then, just ask me another question! Show interest! I know, you're probably thinking, "why don't you just ask people questions instead?!" Well, because, as mentioned above, it's exhausting for me to exert that much energy. Plus, I'm quiet and not known to just start talking to anyone I'm not comfortable with. My energy is precious, and I choose wisely where I spend it. Plus, I've had too much experience with people brushing me off with "never minds" when I did show interest, but couldn't understand them, and when that happens enough, you just generally start to give up on the human race.

But hey, I'm only (almost) 30. I'm young. I'm growing. And I'm putting myself out there more. Just maybe humanity will win itself back and I'll be that middle age person who talks to everyone. Until then though, you can email me, IM me, and text me as much as you want. It's funner that way.And no one says "never mind" in written format.

Well, well, well...

It's now nearing the end of March 2014, and, I have not posted in forever. Unfortunately, I have nothing to say CI related either! I am simply thriving. My CI is still functioning as well as day 1. It's been 3.5 years now. Really, I am just waiting for the 5 year mark so I can upgrade to the smaller processor.

I can however, talk about my paranoia of my CI eventually breaking. It stresses me out thinking that could happen. If you're a follower (or know me), you know that while I'm "legally Deaf," I do hear - in my humble opinion - fairly enough in my non-implanted ear to get through a one-on-one conversation with someone I know with the help of lip reading. However, my attention span is reduced and I tire out fast communicating this way and eventually look away and piss the person off. :-) The point though, I do not sign to communicate. When I'm really stuck on a word I can't hear or lip read, the person will finger-spell the word if they know how to. If they don't know ASL, it kinda just ends there. I end up feeling like a useless moron for wasting this person's attention while we've become increasingly frustrated that I can't understand them. THAT is how most communication goes when I don't have my CI on. And I don't even want to imagine the day that could happen would become a reality, and last... weeks... if my CI were to ever break. Sad, I know. Whatever. Anyways! It's a constant reminder that I should learn ASL and somehow force people around me to learn it too. Well, actually, while that can benefit me in some ways, it's not going to benefit me with hearing people who don't know it. Shoot! I guess the answer is called paper and pen. But then, maybe it's not! Imagine that the one time I whip out that paper and pen and ask the person to write down what they are saying, and it turns out they can't write! Because they're missing their arms! I'm just kidding; I realize those odds are extremely slim. Like I said, Paranoia. Let's just hope it never comes to its demise. Ever. Or let's just hope that wherever I work when that day comes, that everyone just has a field day with the fact I can't hear a thing they're saying and I would prefer to be in my little cave by myself. Yea, I like this option the most. I guess it just means I need a new job, 'eh?

I remember I posted about a movie that was coming out... eventually... I wonder if it ever came out. Lemme google... I obviously did not keep on top of this film. 95 Decibels was released 10 months ago, and from what I'm seeing, the only way to watch it is to buy the film for $25 from their website. It does not appear to be online anywhere. If anyone has seen it online, feel free to let me know where. I am not a fan of spending $25 for a DVD.

Switched at Birth and a CI

A recent spoiler indicated that over the next several episodes of Switched at Birth, a character will be getting a cochlear implant, but we won't know who until the episode airs. I've read that it might be Daphne, but I also read it could be Emmet's father, who has a cochlear implant in real life and would be able to play the role the best.

However, in another episode, Daphne's character will enter a dream state of 'What If' she had a cochlear implant. Which is something she imagines she would have if she had not been switched at birth and the Kennish's raised her. How different would she be really if she was raised by the Kennish's? Do you feel she grew up into this amazing person strictly because she had Regina, who did everything in her power to make the World an easier place FOR Daphne, but causing her to have to fight for herself? There's something about being given an implant at a young age, in a rich family, that erases the possibility of that kind of learned behavior. I'm not saying she would have grown up worst, just different.

In any case, if you're excited to see these episodes, the episode of "what if" will be on July 8, and the character that received a cochlear implant will be on August 5th.

95 Decibels: A Film

 I recently discovered that there is a film premiering in New Jersey Sept 26, called 95 Decibels. It revolves around the difficulty parents face when they find out their child has a hearing loss, and then the process and drama they go through towards making the decision to give the child a cochlear implant.

ER actor, Goran Visnijc, will be in it, as well as Tyler Hollinger and Megan Corry playing the parents. There isn't much more news revolving around this film right now and unless you score tickets to see it in Jersey, most of us won't be seeing it until the end of the year or early 2014.

Here's the trailer with captions.

A night at the Races

A few nights ago my husband and I went to the NASCAR Nationwide race outside of Phoenix. We were convinced I would end up taking my implant off the moment the cars began racing. However, that was not the case! I found that the ClearVoice massively reduced the background noise to the point the cars were actually tolerable with the CI on. I can't say the same for my non-implanted ear though. I had to put an earplug in instantly before I went nuts. Again, my non-implanted ear hears around 120db, so it's not like I have great hearing in it or anything, but I do hear some things fine (like 20 engines roaring at once, or my husband talking next to me without the CI on). But overall, I guess this is semi-great news for some reason... that the CI can tolerate something so horrible sounding. I doubt I'd be saying the same thing if it was pre-ClearVoice, however.

 On a different topic, I was upset Danica wasn't racing that night. Apparently she was racing for the following night for the Sprint Cup, and even so, she was in the bottom 6 because of a crash. Lame.

AB's Got a New Processor!

Most of you have probably already heard about this news. Advanced Bionics has produced a sleeker processor, that is currently available in Europe. Upon FDA approval (which is likely), it'll be available in the US around this summer. Here's a brochure of it:

If you're looking at the processors on the right side, the new one is the middle white one. The current one is the left, and the right tan one is actually today's hearing aids. Most of the information just seems to point out that the new processor is much slimmer, which will be a breathe of fresh air to all of our ears. Yet, there has been more information that it will have wireless capabilities for things like using a bluetooth, hearing the TV directly and so on. So it'll also have the option of hand held remotes to control those things. I don't know if they will cost extra or be insurance covered, however.

Either way, I have to wait until October 2015 to get this upgrade. Quite lame, but that's how insurance rolls. And by then, it might be even smaller!

2013 Update

It's been 5 months since my last post. I'm sure I've had something to say a few times, but forgot  to write about it. For the time being, I can just update on my implant.

It's going as well as it has been for the past year. I do, however, feel I need another mapping, some more tweaks, to increase high frequencies. Some things are starting to sound a bit low to me. Yet, I still feel it might simply be due to ClearVoice, which did that when I was switched to it. In some ways, I've found it a nice program, in other ways, I've found it to be more limiting than I want my cochlear experience to be. I'm not sure if there's any middle ground around it yet.

I still have my days where I go the whole day without wearing the implant. Sometimes I just don't care to hear the TV, or the doorbell, or the dogs playing. But what can I say? It was my life prior to the implant and it's still a part of me to have complete silence. Plus, I always imagine the day when the implant could fail or break and I'd have to go weeks without it, anyway.

Accommodating Me Throughout the School Years

I recently saw this article and it struck home with me. It is on this site called Hearing and Kids, called "How do we know what a child with a hearing loss needs in school?" It has gave me the urge to share my own experience with accommodations as I was growing up in school.

I was around six years old when I was really aware I had a hearing loss because I was suited with hearing aids and entered elementary school at First Grade (skipping Kindergarten). Elementary school was a huge step out of my league from I recall from years in Preschool. I wasn't aware I had hearing issues before age 6, but when I think back, I was yelled at a lot in preschool for "not listening." I was too young to put 2-in-2 together. I thought I was just a bad kid.

I didn't use any special hearing devices until middle school, but I remember all the hearing issues I had in first grade. That I didn't know what the teacher was saying nearly 70% of the time, that I literally taught myself speech growing up from learning in first grade about how letter arrangements help distinguish the pronunciation of words. I guess I felt I didn't have a choice because I wasn't hearing anyone well enough to learn it all like a normal person. This was the reason I grew up with my speech coming across much different than the norm, and how I wasn't even "corrected" much on my speech until I was an adult! It's only now with my implant have I actually been learning the correct pronunciations and slowly fixing my speech  myself.

Fun fact: At some point, I began calling my teacher Misses Bitch. Her name is actually Misses Fitch. I don't know why I was calling her the B-word, maybe I couldn't hear the "F" in her name. In hindsight though, this was funny cause I was only 6. (Wasn't funny at the time though...)

In middle school, there were better resources around at the time and since its invention was relatively new, the FM Trainer came around. I was lent it to use on school property. It is basically a device that clips into my hearing aids, and uses radio waves to help me directly hear the person wearing another device that had a microphone (usually the teachers). It works almost exactly like a walkie talkie, though it didn't look the same. I wore the FM Trainer everyday until I graduated high school, although I was upgraded to newer versions twice by then. Here's an image of what the one I wore during my last two years of high school resembled:

I loved this one. Mainly because, THERE WERE NO MORE WIRES! Imagine wearing, for 8 hours a day, a box that clips on your pants (like the box in the left image), and has two wires that go up your torso and hook into each hearing aid. It is a pain in the butt. And I dealt with a lot of, "What is that?" and a few, "Take that off! You shouldn't be listening to music at school!" Said one teacher who seriously though it was a walkman. Rude. The new one simply had a little end piece I attached to the end of one hearing aid. It was very modern and very awesome. The teachers still had to wear a microphone system though; I don't think there's much room for improvement within that end.

In college, I only attended campus classes my first three years, and I didn't use an FM Trainer. Mainly because the college had a total old-school FM Trainer... one that was so friggin old, it was older than the ones I used in middle school. And it sucked. Its transmission was horrible. It wasn't worth dealing with. So I went to classes the old-school, tough way, of sitting in the front of class, lip reading, hoping I'm NEVER called on because I'd likely have no idea what is going on, and having a note taker (who sucked). Needless to say, I did OK, but I did fail one class from not having a note taker and from not hearing enough of anything to comprehend the entire course.

It was around this time, I realized campus classes were just going to fail my opportunity of actually learning anything well, and thankfully, that's also around the time the emergence of online courses came around. So I switched to full time online and was understanding material as well as my ABC's.

That article, states one very important piece of information I want to quote,

"The technology is so good, school staff members sometimes think that kids do not need any help. I have had school staff tell me that now that a child has a cochlear implant he is no longer disabled. Well, he is certainly much better than he was before he received an implant, but it is really important to understand that he is still not normal hearing."

This is absolutely correct. I may be hearing 80% better than I have in the past decade, but I am still legally Deaf, I still need accommodations in some ways, and I am in no way, "normal." I have been dealing with the constant need to confirm to others that I still have hearing issues despite the implant, because many think I am hearing normal now. Anyone that actually hangs around me for extended periods of time (like my co-workers) are typically aware of this as they still need to tell me when it's break time or showtime or whatever. Of course, they also didn't know me before the implant, but they should probably be thankful for that (it would've just been a bigger hassle dealing with me).

With that said, this is vital information to keep in mind when dealing with children with a hearing loss who do or do not, have a cochlear implant. It is rude to assume implanted individuals are hearing normal and no longer need help. It is important to know them all individually and realize what works best for each one.

Tinnitus and More

Well.

I've been having some lovely tinnitus in my implanted ear the past few weeks. It's not horrible, it's just there much  more pronounced than usual. Always sounds like a lawn mower in the distance is going off. Lovely.

All I can do is wonder what makes it louder than usual. Is it my lack of sleep? Caffeine products? My nerves still adjusting to the ClearVoice upgrade?

I do tend to turn the volume up a little louder with ClearVoice since everything is somewhat softer. Some high frequency sounds will come across way too loud with the volume I use, but it depends what is going on around me. But sometimes all it takes is one loud noise to turn on my tinnitus. Kinda like if you get punched in the face, you see stars. When I get audibly "punched" in the ears, I hear ringing.

Just thought I'd mention that.

I had the privilege today of hearing someone calling my name at work. Faintly, but I swear someone was saying, "Nichole, Nichole..." and I was looking around me like a freak trying to find the source. Then I walked down a few lanes and noticed my co-worker on a ladder starring at me to help her and realized it was her. Haha, that was fun. It's also nice when I hear my boss calling me from 10 feet away. Or when I can tell that one of two ladies are in the building because they talk so loud (on purpose), even though I never know what they're saying. Except this one word: "Natalie!" One of the two ladies likes to scream that name a lot. Makes me feel like I'm at home. Where everyone screams for each other. The screamer also reminds me of my mom. Enough said.

Other than that, sometimes I listen to the radio in the car, and usually can't make out enough speech to understand what is being talked about. But this morning, I heard one sentence quite well, "At Carls Jr, you can get a large drink for only .69cents!" Well, isn't that lovely. That's cheaper than McDonalds!

Maybe you've learned something right now. Like, that you should go to CJ's just for drinks. (But that's silly. You can also buy a 2 Liter of store brand soda for .69cents. Depending where you live).

CI Heart Rate Study

Today was the day to do my part in a CI study at ASU Tempe. The study, when it's finished, will have 2,000 participants. I was participant like, 1,500 something. So they're pretty close to finishing it in the coming months. The purpose of it is to monitor the heart rate to see if it increases when CI users attempt to distinguish speech in noise. The point of this study, I actually do not know. I mean, what if they find a confidence interval that 90% of the test subjects having an increased heart rate... then what? Would it prove that someone needs to have a currently well-functioning heart rate before they get a CI? No idea. Anyway...

When I arrived, the first thing done is signing some papers - that I will get paid said amount of money, and that I can just leave anytime I want. Apparently some people have had second thoughts about participating at the last minute. Silly people. What's to fear? The only expectation was that we'd be tired by the end of the test. And damn straight I was tired. If a 2 minute speech test for my audiologist can wipe me out, an hour long speech test is draining. Oddly though, that part wasn't even the worst part.

The test was a series of 6 tests.

• Test 1: Speech in quiet. Easy peasy. Like, high 90% accuracy, easy.
• Test 2: Speech in really loud noise. Horrible. Reminded me of why I can't understand my co-workers when everyone is conversing group style. I just can't do it. Too much going on. 
• Test 3: Visual test without implant, in which I was to say the color or word on the screen. Easy. But it goes on for 5 minutes, and by minute 1, you feel like a zombie.
• Test 4: Speech in mild noise. Wasn't too bad. Maybe 60% accuracy.
• Test 5: Visual test without implant, in which I was to say the color of the word, while ignoring what the actual word says. Think, a word that says pink, but is the color orange. I was to say orange. This requires some serious left-right brain control. And it was the most draining part of the test because it requires a ridiculous amount of attention. 
• Test 6: Speech in moderate noise.

That was the order I did them in, anyway. The point of the visual test, I'm assuming, was to see if the heart rate changes from a visually challenging experience compared to an audibly challenging experience. There was a 5 minute rest period in between each test to monitor my resting heart rate.

I could see the heart monitor off to the side most of the time, when I looked, and I really didn't see much fluctuations in my heart rate during the whole thing. If there were fluctuations, they're probably minor, or happened during times I wasn't paying attention (like during the visual test, since I had to look at my screen).

One thing I learned from this test: I hear a female voice better than a males voice now. Prior to the implant, male voices dominated because they were low pitch. But I found it a bigger struggle to understand a male voice in noise, than a females. I also learned, that if I'm ever asked to do a visual test like that again, I might punch someone. But getting how much $$ I did for this study, made it all, pretty worth it.

Also, the test as a whole, felt like one of those affirmation tapes that people listen to and repeat until they've got the speeches brainwashed into their skull. Repeating a bunch of a random sentences for a total of 30 minutes, really made me feel like I was psychotic for a while, and had "I" talking to "me" and "me" talking to "myself." Get it? Obviously you need to re-watch Me, Myself, and Irene.

With that said, I think they still need more participants for a few studies. If anyone is interested in finding out if you are a candidate, contact me somehow and I'll send you the contact email. They'll reimburse the traveling costs and pay you a small sum for participating, per hour (it takes 2 hours).

Otherwise, I hope I get to do another study someday. It wasn't so bad. Makes you feel like you participated in something that could potentially be important.

ASU CI study - I'm a participant!

I received an email a few weeks ago from ASU research center about them obtaining information on my cochlear implant status for a study. Although I didn't qualify for the actual study they were reaching out to me for (because I don't wear a hearing aid in my non-implanted ear), I was told I do qualify for another study they've been conducting for a while. I told her I was all for it, and now I'm scheduled for that on July 11th.

The study is going to measure my heart rate and blood pressure while I listen to voices in noisy environments. The theory is that our heart rates increase. Which I can personally say, mine does. It does get much higher if I'm expected to repeat back what I heard. It's an anxiety thing though. The belief that if I don't understand the speech correctly, I'm going to fail, make my life harder,and make YOUR life harder. Although I'm doing much better at hearing people in noise with this CI, that anxiety is still there, but it's certainly not as bad as it was prior to the CI, where I'd go into an all-out anxiety mode of "OMG, someone is talking to me right now and I'm not going to know what they are saying and we're both going to hate me!" And most of the time, I still had no idea what they were saying, so it was pretty bad for me. But these days, "calm down, listen closely, you'll understand and make these the happiest people for the next 5 minutes," and frankly, I do quite well - 90% of the time.

I'll definitely provide an update on my actual experience with the study, if I'm allowed. I don't know how much of this stuff is suppose to be kept quiet. But I'm pretty excited to be a lab rat for the first time in ages. Oddly. Plus, getting paid close to $60 for 2 hours of my life, is a pretty sweet deal. Having to drive home from the study in Phoenix rush-hour traffic however, is making me second-guess this. Ha.

How I like ClearVoice

I've had ClearVoice for about two weeks now. My stand with it is, so-so. While I definitely prefer it in public, like at my job, because it drowns out all the annoying background noises, but still allows me to hear people when they speak, I don't prefer it in otherwise quiet situations.

My first encounter with it in public was at a baseball game. I recall that they are usually really loud in a muffled way due to the thousands of people talking. I remember it was usually so loud at the games, I had to lean in close to understand my husband next to me. But with the ClearVoice, human chatter was reduced dramatically. If I were to rate the level of sound before ClearVoice at a 9 out of 10, with ClearVoice, it is a 3. Absolutely no complaints about this difference.

At my job, it has tuned out a number of noises, including the air conditioning system, general loudness of human chatter, and even this floor waxer that use to be pretty loud. While this can be kinda nice, because I'm sure even hearing people wish they had the option to tune out annoying sounds like that, and I'm not going to lie, I still embrace being Deaf to some things, but at the same time, I kind of miss those noises. They let me know that I could hear things again that I wasn't hearing prior to the implant.

In quiet situations, such as in my living room where I like to sit with the TV on low, while reading a book and semi-paying attention to the TV, it has also tuned out general sounds like our A/C system, cars, the usually obvious to hear garbage/recycle trucks, and so on. But more importantly, it has reduced the quality of sound from the TV to much lower. Not only do I have to turn the TV volume up louder than I use to, but I even have to turn my implant volume up to get it where I like it.

As for voices, is it making them clearer like it's intended to? No. In fact, I have not noticed any change in my ability to interpret speech, in person or on TV. Although I believe its main intention was to reduce environmental sounds so that speech stood out more. We can either hear everything, or we can hear people so we can communicate better. Usually, we just want to communicate better, so ClearVoice does allow this ability, especially in public situations. However, I am personally going to go back in for another mapping and ask to have a ClearVoice setting for public, and the non-ClearVoice setting for quiet situations. When I'm alone, I feel like I need to be audibly alert. I like to know when the garbage man comes and goes, when there is a faint knock on my door, when my husband is awake, and when small things just make sounds.

Neptune Update

Short update. I asked about getting the Neptune processor since I'm going to a lake this summer and would totally like it if I could leave a processor on to hear. Unfortunately, Medicare only allows someone with a current processor to get a new one every 5 years. So, I have to wait until October 2015 to obtain it. By then, will I even care anymore? Heck, hopefully AB will just come out with a newer, smaller processor by then, which I'd be more excited to get

ClearVoice - What was I actually expecting?

I finally got my implant programmed with ClearVoice today. I've heard nothing but positive results about it and figured it's a must have if I want to hear people talk better.

Advanced Bionics states that many individuals have showed much better speech recognition results with this program, with much better results in children than adults. Certainly sounds promising.

My new audiologist explained that there are three levels to ClearVoice, a low, medium, and high. In which, the low takes out only a minimal amount of background noise, and the high takes out lots of it for optimal attention to be drawn to vocals. She reset all my settings with the medium setting, saying it's typically what people prefer, and it's a good starting point to see how I do.

The first thing I noticed when she switched was that the low static noise that I always hear in doctor offices, disappeared. I assume it was the air conditioning system; I always find it to be the most overwhelming noise in most commercial buildings, even my work. As far as speech changes, nothing. But that was to be expected since it is in an otherwise, quiet office. Plus, after all, if I already have 100% speech recognition in quiet, what was I really expecting with ClearVoice? 120%? Is that even possible?

As I left the office, the next thing I noticed was that my car was driving much quieter. Usually when I drive, I hear the traction of the wheels on pavement pretty clearly, but it had been gradually reduced in sound to be close to unnoticeable. I decided to listen to all the songs I listen to in a cycle to see if they sound any different. Besides some obvious sound reductions, again, in the instruments, I didn't really notice any increase in vocals. Some of the songs even sounded a little less enjoyable than they previously did.
I'll clarify this part - as you'll recall, my non-implanted ear hears at about 120 decibels, which is bass levels. I consider it to be my ear to balance out the implant since my implant favors high pitch and frankly, most sounds under 90 decibels. Thus, when I listen to music, I've got my implanted ear hearing the vocals above anything else (generally), while it'll also pick up any high pitch instruments, such as flutes, saxophones, acoustics, violins, and many chords of the piano. At the same time,the non-implanted ear is picking up the bass, the drums, the bass guitar, low pitch chords of the piano, and the guitar. To me, it's a sweet balance in sounds, and it's the biggest reason I have no interest in getting my other ear implanted. I also rely on the non-implanted ear to hear when I take off the implant, which still functions well enough for me to get around... my house. And I'd rather be hearing something, than nothing, when the implant isn't on.

Other than that, I continued to test the ClearVoice when I watched some TV. Again, no noticeable difference in speech comprehension. In fact, all I've overall noticed so far,is that the sound quality with ClearVoice seems somewhat softer. I had to actually turn the TV volume past 30, which I never do. I leave it at a comfortable 24, usually. (I'll clarify here though, that although a 24 is my volume of choice, my husband, with normal hearing - so the military says (I think they just suck at testing the military) - prefers the volume at nearly 45. So my "comfortable" 24, is no where considered loud).

So, I guess my biggest test for ClearVoice will be when i get my butt in public. Sunday, I'll be attending the Diamondbacks game, and that should be a pretty good testing ground. Tuesday, I'll be back at work, and again, that will also be a good testing ground. The most frustrating place to hear people these days, is, after all, at my job. The building is always loud, with the AC running, the soft but obvious music playing, and if the store is open, customer chatter everywhere. It's usually so environmentally loud in there to me, that I can't hear someone talking to me behind my back. Like the old days. A constant reminder that I am, indeed, still Deaf, no matter what's in my skull.

AB's new processor, the Neptune

Those of you with implants already know about the release of the Neptune sound processor by Advanced Bionics earlier this year. For those of you that don't have an implant and don't keep on top of this type of information, I'll explain. The Neptune is the first ever waterproof cochlear implant device. Like hearing aids, standard CI's cannot tolerate water and moisture without getting damaged. The Neptune, however, can. This is great news for those that are avid swimmer's and will be able to embrace being able to hear while in bodies of water. Even I have to admit, it'd be nice to be able to go to the lake and still have my CI on to talk to people floating on tubes around me, instead of having to go completely deaf. The last thing I, and others, want to deal with, is possibly damaging a device worth more than 20 grand.

It would also be useful for people that exercise often. There is nothing more annoying than wearing the implant and sweating (behind my ear). Some people (even I) may go as far as snagging the ear piece into our hairbands to avoid the sweat-with-plastic contact, but of course, it's a pain in the butt. Although there are some serious pro's about the Neptune processor, it's certainly not an implant I'd be wearing all the time. It still has a wire attachment; it just attaches to your swimsuit strap, shirt strap, swimmer's cap, or whatever clip on area it can reach. If it was wireless, my goodness, it'd be a slam dunk. Although what I really dream of, is an entire processor all in one, that will only clip to my skull as one small piece of plastic. I'm sure that's everyone's dream... science hasn't gotten that far yet. But with the extreme changes we've noted in hearing aid sizes, it'll definitely happen someday!

Jaw issues seem to have resolved

Some of you may recall from earlier posts, post-surgery, that I woke up from my surgery with some serious jaw issues. Something from the surgery set some inflammation off in my jaw and it was never the same. So for nearly a year, I was limited in what I could eat and I avoided seeing the dentist because there was nothing they could do for me if I couldn't open my mouth wide enough. I was recommended to go see a TMJ specialist, but I never received the referral call to make an appt, so I just never bothered to put in the effort to make it happen. Plus, I did all this research on what the TMJ would likely say, and what they would recommend as treatment, and all of it, was expensive, pain in the butt sounding, treatments. Like the splints... where they would make a mouth guard, of sorts, that has to be worn nearly 75% of the time and constantly re-made, (meaning continuous expenses), until eventually, the jaw is more aligned and hopefully pain free and working better. Ya, right... not happening.

What I ended up doing though was quitting coffee and other caffeine products. I did that from about August 2011 until Jan 2012, and frankly, I believe it helped a bit. The possible implications coffee/caffeine have on the jaw is that it increases our bodies tension and it can cause you to clench your jaw more often, aggravating the pain. Other than that, coffee is also known to leech nutrients from us, mainly because of its diuretic properties, and unless you're taking vitamin supplements everyday, you're likely losing lots of valuable nutrients when you drink coffee. There's also been research suggesting it leeches calcium from our bones, which is certainly not good news for us ladies that likely having beginning stage bone issues in our 20s. It's certainly not good news for ME, because I personally hate most milk products and don't acquire enough calcium.

However, after I eventually had my third vertigo spell late last year, I was recommended to get a physical for blood tests to see if there are any deficiencies that could be causing my vertigo attacks and general feeling of crap. Two rounds of blood testing confirmed I had a severe vitamin D deficiency, which is likely the explanation for my constant fatigue I've been experiencing since I was a teen, amongst other things. I don't know if this deficiency is the cause of the vertigo's, but I suppose when it dropped to all time lows and kept dropping over the past  year and a half, it off-set symptoms that were similar to being diabetic and having a massive blood sugar drop. The tests showed I'm not diabetic, so I guess it's all from the lack of vitamin D (and probably calcium, as I stated above).

So, I was recommended to take some calcium and vitamin D supplements, which I have been taking for the past month now. I must say, my jaw is the most back to normal that it has been since before the surgery. Not only that, I seem to be digesting coffee better now. Prior to the supplements, just a few sips of coffee made my body feel like it was physiologically punched. I would feel tired right away, usually end up taking naps nearly 2-3 hours of waking up from 10 hours of sleeping, and my brain would literally shut down to the point I couldn't really do anything but be a zombie. But I have not been experiencing those symptoms at all since taking the supplements. Who knew calcium and vitamin D had THOSE kinda affects on our bodies? All we hear is that they're good for our bones. So, we assume that if we don't get those nutrients, that our bones are just going to cave in earlier than they should. We don't think it's going to affect our digestion with other products though, or how we metabolize, or how it affects our minds... or that it could even have anything to do with your jaw. We just don't stop to make these connections enough, we don't get more well-rounded information from our doctors, and we don't do our own research until we're personally affected by something.

I suppose you could say this is partly why I became so interested in health. Although my interest stemmed in 10th grade during my first health/nutrition class that made me consider my diet and habits. I'm more prone to research since I began my Bachelors programmed in health education (and have since acquired my degree in Dec 2011), and want to be able to educate others on the important of nutrition. If you must take supplements, then take them. Some research may say supplements are pointless, but hey, it probably varies by the nutrient. Because I certainly notice the positive affects calcium/vitamin D supplements are having on my health, and I'm sure others would to (including all those old ladies popping those pills like candy).

With that said, I'm pretty happy my jaw is feeling better. It's nice to be able to eat things that use to aggravate it. It's nice to be able to enjoy the billion cups of coffee I drink these days because of my absurd work hours. And it's nice that I can make a dentist appointment again and finally get my teeth cleaned/checked up on.

My advice: if you feel like crap and have for years, go see your doctor for a physical and blood tests to see how you're doing. It could be as simple as finding out you need more of a certain vitamin or mineral to feel better. Certain deficiencies also seem more common based on locality. In Phoenix, for example, despite the ample amount of sun available all year round, vitamin D deficiency is really common out here. When in doubt, see your doctor and do ask if it's OK for you to take multi-vitamin supplements and so on.

Silence is Bliss

It seems I've been missed. I understand. I'm missable. (Missable should be a legitimate word).

A month ago, my husband and I have taken in his childhood dog, Dyna. She's about 13 (or 14) years old, and recently had surgery to recover from getting hit by a car. His parents couldn't handle her anymore because she requires being looked after and his mom couldn't handle seeing her so beat up anymore. I understand. Even I can't stand seeing her in this condition. My husband however, has the mindset that she will stay alive as long as he can allow it (and as long as she never requires expensive surgery), regardless of her condition. So, here she is.

Besides that fact she has only 3 useful legs (the other one was damaged from the accident and unsuccessfully can't be fixed), she also has heart and thyroid problems. This requires some daily medications, which we, unfortunately, forget to give her every single day. Although she didn't receive the meds for about a month before we got her either. As a result, she is losing her hair as fast a cancer patient and developing scabby skin. Today, she actually started bleeding from a scab on her backside. It's kinda gross and not a sight anyone wants to see. But hey, my husband loves the crap out of her.

The reasoning for telling you the story of Dyna is because she is the first thing I have encountered that has made me happy I can take my implant off sometimes. This is because she is a whiner. It's like having a baby in the house sometimes. And last I checked, no one likes the sound of crying, wailing, tantrum-throwing, fussy, needy babies. My husband says she's been doing this way since she was a baby herself. It's her awesome(ly neurotic) way of communicating that she wants food, to be petted, to go outside, or who knows what. Unfortunately for her, she is not pet-able anymore, she's on a diet since she can't exercise anymore, and when she does go outside, she pees and poops so fast that you're pretty sure all she wants is to come back inside. So, these days, it just seems like her annoying habit. And I can't yell at her ALL the time, so I take my implant off and enjoy silence.

Silence is bliss, I tell ya. 

Just when you think it's ended, it really hasn't

For some time now, I've thought I wouldn't have any issues with my CI. Nearly two weeks ago, after beating a cold, I developed vertigo and the nausea that comes with it, again. Totally unexpected. Granted, it wasn't as bad as it was when I had it after my surgery or back in January 2011, but it was bad enough that I had to leave work a few times or risk vomiting everywhere (or fainting, even). I had to go back to the doctor for some anti-vertigo drugs to subside it. One pill is all it takes for the worst of it to go away, even though I can always feel it lingering during the first few hours after waking up, for several weeks.

Supposedly, this might still be a sign that I still have Benign Positional Vertigo (BPV) which was somehow set off during my surgery. I did read up that it is a rare risk of the CI surgery, as some stones in our ears can get shook loose during the surgery. In January, my surgeon gave me some exercises to do to subside it, which I did for about two days, then felt better, and figured I'd not bother doing it for another few weeks. It's likely I just need to do those again and see if the vertigo never comes back. But with my luck, it'll be a recurring condition with no idea what sets it off.

Lame.

Other than that, the quality of sound from my CI shifts, mostly seems noticeable when I'm sick and when I've had caffeine. Caffeine is an enemy in my body, even in tiny quantities, and sets off my tinnitus, as well as fatigue, tiredness, and sometimes headaches. The sound shift with the CI is that I become really sensitive to it at the lowest volume and that just tends to aggravate my tinnitus even more. Other times it sounds garbled. Kinda like if you're sick and your voice is compromised but you speak anyway and sound ridiculous, that's what the sounds will come in like.

For the most part though, I'm still hearing rather well with the CI. I am overdue for another test and mapping, however, which I am probably going to need to schedule myself since my audiologist of the past year has taken a job elsewhere. However though, I still have no interest in going bilateral.

25% Auditory Improvement

I had a three month CI check up today. We started with the basic beep test... I'm hearing at the same levels I was three months ago, except my high frequency dropped a notch. In my defense, I've have tinnitus going off again this past week and it does affect my hearing tests because I'll assume some beeps are the tinnitus, so I won't click the button, and I'd rather I get that wrong than falsely correct, so I played it safe.

Usually when I do the speech test, there is a mans voice playing from a CD, but the CD player was broken today, so my audiologist did the vocals. This may have biased my results because she's a female, she speaks clearer and I'm familiar with her voice. Even though, the automated male voice is also clear, and males are easier to understand than females, so it might just be that I'm familiar with her. Either way, I got 100% on the speech in quiet and 84% on speech in noise. That's pretty much a 25% improvement from three months ago.

The future speech tests will likely fluctuate in the top 80% due to the way I process speech. For instance, when I hear these sentences, I'm never hearing every single word correctly, but I manage to repeat back the correct sentence by assuming what the missing words were based on the sentence's proposition.
Example: "The girl went to the farm." I may hear 'the girl went to the arm,' but obviously that sounds wrong, so I manage to process that the last word was probably farm.
Otherwise, there's just some sentences where I can't make out half of the sentence and can't even take  wild guess what it was, and that's what gives me a score of 84%.

I mentioned that I felt I might've needed the high frequencies raised due to not being able to distinguish certain sounds yet. She mentioned it's pretty common and there's not really much more the CI can do for me at this point. If I'm not telling them apart, then I just gotta rely on sentence structures and lip reading, which I do anyway. She did try to raise the high frequencies though, but ended up reducing it by 2 points because it was just too intense at the level it was currently at. But she did raise the decibels for high frequencies... which I think she said means she raised the amount of firing the electrode will use to help me hear high frequencies, while at the same time, not raising the depth of the frequencies. Something like that. It's over my head.

So now I've got three settings on my CI: normal, tv, and noise. I hardly ever use the noise one because I'm not really in public much and when I am, the noise isn't bothering me to the point I consider switching modes. Although I should test it out more often because it might allow me to hear grocery clerks better than I do with it on normal. The tv option is so I can increase the CI volume without dealing with the intensity of the high frequencies. This is cause I consider my husband auditorily bipolar. Whereas I like the tv volume at 28, for the same show, he would like it at 38. But if we're watching a movie, I like the tv louder because the vocals are typically reduced for movies so to enhance action sounds, but he likes the tv lower than I do in those cases. So in cases like that, I can turn my CI volume up and hopefully hear more of the vocals. They also have the sounds set like that in theaters, which even with the CI is STILL annoying.

Quails and updates

Over all, my CI journey has reached a standstill. There will not be much else to say about it unless I'm a victim of malfunctioning or some random ailment as a result of the surgery or implant (which is all unlikely). Or perhaps if I get a new processor or get to participate in a study... or have a kid or find a job... all, which is unlikely for at least 2-4 years.

As I was pulling weeds in our backyard all week, I was hearing this whining sound that made me think of a dog that is crying. But it was tough to imagine there would actually be a crying dog outside nearly every single day, several hours a day. So when Thomas came out one day and I heard the sound again, I asked him what it was. He says it's a quail. Which is odd because I have yet to even see a quail out here... but for the time being, I guess quails sound like crying dogs. Sad.

I do have another CI mapping in a week; my first one in 3 months. Then I won't have another one until mid August, I think. My CI has absolutely had no "growth" towards hearing low pitch. Everyone told me it would eventually adjust, but it's not seeming that way. I think I once read that the electrodes often don't reach those very deep areas of the cochlea where low pitch nerves reside, so if that's the case, that might be way I'm not hearing any. The only burden is it's tough to actually hear most music the way it should sound. But then again, since my non-implanted ear pretty much only hears low pitch, I seem to have some balance in sounds between the two ears. The only singers I am able to enjoy these days it's people like Celine Dion, Mariah Carey and Whitney Houston. It's all about the vocals and who can carry some pitch. My past taste of alternative rock has gone out the door cause none it sounds the same anymore. Totally bummed.

On the other hand, my ability to grasp high frequencies is still a challenge. I've had one setting on my processor for 3 months now and I have not been able to increase the volume on it by any means... which would have allowed me to hear even more high frequency sounds. So I expect a 5 point increase in high frequencies on my mapping next week and nothing else. But maybe the preset volume is just too high? I'll have to mention it.

My speech comprehension should be better than it was three months ago, despite the lack of practice over the entire 7 months. I have not been able to find any pre-set sentence programs online to practice with, and my husband seems to just always be too busy with something to practice with me. But at the same time, when we practiced for 5 minutes a few weeks ago, I was bombing the word distinctions in a predictable way, likely due to the high frequency settings still being set on the low side, making it hard for me to tell apart similar sounds.

There's news going around that there is a new AB processor that has been developed and is being used (I think) in Europe. It's called Neptune and it's suppose to be small enough to be worn while swimming. Not that I'd ever care about wearing a hearing device while I'm underwater, but IT IS SMALLER! If it spreads to the United States, I might be able to upgrade to it in about 5 years... unless I wanna pay chunks of bucks for it out of my pocket (naw). But my ear will be so excited!