Mapping #1

A couple of friends asked me to update my blog after mapping. So that’s what I’m doing. 🙂

Last week was initial stimulation and today was mapping. They’re generally the same.

Today went much better than last week. Why? I didn’t want to throw my CI. 😀

A few things I noticed:

-On the way to my mapping appointment I finally turned on the music in my car. It’s been off all week. While it did not sound great, I was surprised at the fact that I could pick the music out over the noises of the highway at a very quiet volume. With hearing aids I usually had to turn the music way up whenever I got on the highway and even then I couldn’t always pick it out.

-I noticed that I can hear the noise that’s made whenever I hit the scroll ball on my sidekick. I thought I was imaging it at first because I didn’t think it was possible for that to make a noise. I’ve tried it several times today and sure enough it does make a noise. I guess from it rubbing against something else.

-After mapping when I was switched back to live mode. It was so much better than the last 2 times in terms of being bombarded with noises and the volume level. I was actually able to pick out my audiologist’s voice. Of course it all sounded the same. However, the last 2 times I couldn’t tell what was what at all and it was just a constant noise.

94% of everything still sounds the same. Once I tolerate sounds better I should be able to start the long process of gradually figuring out what is what. Right now it’s all just kind of one big cluster of sounds.

I also finally figured the one sound that I have the hardest time tolerating. Voices. I just have a hard time tolerating it whenever people start talking compared to other sounds for some reason.

I just feel better today even though not much has changed.

Triggering Sensory Issues

I should probably explain that I’ve always had a few minor sensory issues. It’s almost more of a quirk than anything else or at least that’s what I like to think. 😉

I do enjoy being stimulated by things like bright colors, music, roller coasters, etc. However, I’ve always had a few issues with certain things. As a child it took forever for me to get used to wearing jeans just because of how the material felt. When I started my clinical rotations it took me forever to get used to wearing causal business type clothes. There have been days where I had a hard time focusing on what I was supposed to because I couldn’t stand how the clothes felt against my skin. Most of the time I can do a really good job at ignoring stuff like this but there are days where I have a hard time handling it. I did outgrow this somewhat and it has become easier over the years.

One thing that most people immediately notice about me is the fact that I’m not a touchy-feely person. I seem to be more sensitive to touch for some reason.

One example would be speech therapy. Growing up, I used to hate speech therapy for different reasons. One major reason was that a lot of my speech therapists would grab my hand without any warning to touch their throat (to feel them make sounds). Once they did that I was just lost for the rest of the session. I couldn’t focus on anything because I was trying so hard to remain calm and not get overstimulated. I was really good at faking it and acting like it didn’t bother me. I didn’t want it to. It got to the point where every time I had a new speech therapist I would request that they be informed in advance to please not be so touchy. 😉

Btw don’t worry, it’s okay to hug and touch me. 😀

This can also come into play with certain textures of food, etc. I have done so much better with this over the last few years and I’ve outgrown a lot of these things. I also know how to ignore it when it does bother me.

Anyways, that’s just one of my several quirks and there is a point to this rambling.

So, you all know last week I was a bit overwhelmed at first. Very understandable and I can’t imagine anyone not being overwhelmed. However, what I failed to prepare myself for was the possibility of the CI triggering my general tendency to be oversensitive to things. I have noticed even with the CI off that I’m a lot more sensitive to touch, smell, and taste. Especially touch. I caught myself snapping at a couple of people to not touch me (e.g. trying to get my attention). This is something I only do when I’m overwhelmed and I don’t realize it. Immediately afterwards I felt really bad, because it had nothing to do with them. I’m also noticing that things in terms of taste and smell are twice as strong as usual. Itches have also became almost unbearable.

One may quickly assume that it’s associated with the CI directly. I believe it’s indirectly associated. It’s just something that caught me off guard and I didn’t have any of my coping skills in place. So, I decided to take this afternoon/evening off from my CI to hopefully calm down some of these overstimulated sensory issues before mapping tomorrow.

Kelly: 6
Torture Device (aka CI): 2

Week #1-Take 2: Cartoons vs Live Actors

Just thought I would “record” a few things here that I have noticed with the CI for my own personal records.

I have been wearing my CI in mostly a “controlled” environment where I control what I hear and what I don’t (aka home). I have worn it out in public also. It is harder wearing it in public because once there’s more than one sound in the mix it all becomes so constant and sounds the same. Whereas at home I can control when I hear things and the volume level on the TV, laptop, etc. It’s easier figuring out what I’m hearing when I’m in a controlled environment.

I would say about 95% of everything sounds the same (it was 98% last week 😉 ). However, when I listen to very familiar songs I’m starting to notice an extra layer to sounds that I never noticed with my hearing aids. For example, I never noticed a specific beat pattern in one of my favorite songs until now. Another song–I used to hate this one brief part of it when all the instruments were playing (it all kind of clashed) and I would actually speed forward through that part. Now, I enjoy that part.

Funny thing. When I watch TV shows on hulu.com, I can tolerate “listening” to cartoons (e.g. The Simpsons, etc.) better than I can tolerate live actors. For some odd reason I find it easier to follow the pattern of speech with cartoon shows than shows with live actors. Half of the time I end up muting the TV/laptop when I watch live actors, because it’s so hard to tolerate and I want to enjoy the show!

What do I mean when I say that it’s easier to follow the pattern of speech? When I watch the subtitles while listening I can kind of tell when there are pauses between words. It does all sound the same and I do have to work hard to try to follow the pattern.

I’ve never been a fan of cartoon type shows. I don’t think I’ve ever watched this many cartoon shows until this past week.

No clue why. Anyone know?

I am still struggling a bit when it comes to tolerating sounds in general.

Week #1

Well, I have had my CI for about a week now. It’s been a wild ride so far. Just thought I would give a follow-up as to how I’ve been feeling since it’s been almost a month since surgery.

It’s been about 3 and half weeks (will be a month on Thursday). The incision has healed really nicely and I am very pleased with it. The numbness I had in my lip from the breathing tube finally went away a few days ago.

I have a little bump behind my ear that seems to slowly be going away. At this rate it should be gone in a few days. It’s a bit annoying because it bothers me whenever I wear the processor and it rubs against the processor. I’m not quite sure what caused the bump, fluid, maybe? It was just odd because it kept changing in shape, size, and location.

I still have some stiffness that usually just bothers me whenever I try to open my mouth to take a large bite of something. Hopefully that will go away with time.

It’s definitely going to be one long journey. I have my next mapping Tuesday and I’m not quite sure how that will go. I’m already dreading one part of the mapping. Let me explain that my CI is hooked up to a computer and I let the audiologist know whenever I hear something. During this part I cannot hear anything else except the beep/tone/whatever it is (at this point it’s still a sort of sensation). This can take anywhere from half-an-hour to a couple of hours. Then she switches me back to live mode where I can hear everything in the room.

I. Hate. That. Part.

It’s when I’m bombarded with all these sounds that are extremely loud and is very difficult to tolerate. I also really have to fight the urge to just take the CI off and throw it across the room. The first 30 seconds is just the worst feeling. It’s a mental battle with myself to just get through those few initial seconds while not having any physical reactions. It’s hard to explain. It’s almost like my body responses to it as something that’s going “wrong” or is a danger so it goes into defense mode thinking that I need to fight something off (adrenaline rush, “fight-or-flight” response).

It’s amazing how loud that room is. Seriously. I mean, logically, I know it’s extremely quiet because no one’s talking, the door is closed, and my audiologist takes care to be sure there aren’t any unnecessary noise going on at that moment. I do wonder if there’s a sort of constant noise (the AC, fan, ??) because there’s this constant noise even when no one’s talking.

I don’t mean to keep pointing out all the negatives even though that’s all there is right now, lol. It’s just that it seems like people in general want to ignore all the negatives so I’m just trying to be honest here. However, I would think that for someone with my background there would be more negatives at first before things get a bit better. This is different compared with a baby, someone who has progressive hearing loss, or a late-deafened adult going through the CI process. Sometimes things have to get worse before they get better. I am committed to this and I will figure out a way to utilize the CI in a way that will benefit me.

My brain just needs to rewire itself. How well will my brain rewire itself? No one knows.

How Does One Learn to "Hear" With A Cochlear Implant?

Suggestions? Ideas?

KU Sorrows and Swapping CIs

*sighs* KU lost 😦

Ok ok ok….so maybe I was expecting too much after winning the National Championship last year. Although making it to the Sweet Sixteen is pretty good considering we have a young team and we won it all last year. Beware, next year…we may just win it all again! 😉

I will be cheering against MU for the remaining of March Madness. It’s a law of physics…MU can’t do that much better than KU.

A bunch of us got together for the game. We drove around for an hour before the game and checked out 5 different places to watch the game. No luck. One place had a 4 hour wait. So we ended up going to a friend’s apartment. Afterwards, we went to another place to just chill and hang out.

I got a lot of “How do you like your CI?” I just kind of laughed and told them to ask me that again in a few months. 😉

A lot of audiologists will tell you to not swap CIs with someone else. Ummm…..of course that makes me curious. Never tell me not to do something because then I’ll try to figure out why. :-p Also, for the record I was never told that directly so I officially did NOT go against any one’s instructions. 😉

A lot of it has to do with the fact that everyone has different mappings and it may just entirely throw you off if you try someone else’s mapping.

I was talking to someone about how it’s a bit frustrating right now with my CI and that it will just take time. This person then wanted to try my CI. So I let this person try it. This person could hear NOTHING with my CI. This person then asked me if I wanted to try her/his CI. After a few “No…no…no way….(that’s me trying to be a good CI patient…which I failed at, lol)” I let my curiosity get better of me once again and I thought that this was going to be one of my extremely dumb moments. I then slapped her/his CI on after a couple of “don’t pass out” comments from fellow cyborgs. I thought it would be so horrible that I would just end up throwing it across the room after 2 seconds of having it on.

Surprisingly, I liked her/his CI much better. It did sound exactly the same as mine (monotone constant high frequency sounds), but it was at a much more comfortable volume. Not sure if that makes me feel better or worse. Although in the long run, I’m glad I did try it.

Fascinating…..she/he couldn’t hear anything with mine, but I liked his/her better simply because of the volume level. That goes to show you how much of it depends on how your brain rewires things. It’s just fascinating to me how those 2 CIs sounded so similar to me but entirely different to this fellow cyborg.

I then had a couple of friends mention that I may be pushing myself too much and that it’s ok to just take tinnyyy babyyy steps. They’re right. It’s so easy to set up yourself for failure with something like this. I don’t like taking baby steps, I like taking giant leaps while figuring out the in-between steps later……even though that usually results in more crashes than necessary. I have been doing pretty good this week taking it one step at a time considering my general tendency to want to just skip the in-between steps.

Honestly, I think this CI journey is going to teach me so much more than just learning how to “hear.”

Err…It’s almost 4:30 am. Whoops. Life would be so much simpler if the rest of the world operated on my sleeping schedule. 😉 Night!

Magic Magnet

I’m one of those people who gets bored quickly, however, it doesn’t take much to amuse me.

I still find it weird knowing that I have an implant in my head. I find it even more weird knowing that there’s a magnet there.

What I find amusing is when I place the external magnet within a close proximity of where the implant is…that it just kind of jumps right to the exact place. It reminds me of that “magic” trick many of us did as a kid. You know where you get something that has magnet somewhere in it and you place it on the table. You then secretly move another magnetic object under the table and you “magically” move the object on the table.

Yep. I’m too easily amused.

Kelly vs Torture Device

Kelly vs Torture Device

I have declared a battle between myself and this torture device aka cochlear implant.

I’ve said it before and I’m going to say it again. It is horrible! I knew from friends before going into this that it would be horrible, but they couldn’t really describe it. There’s no way to really describe 100% effectively the experience to a hearing person who has always been able to hear.

Keep in mind I basically have never had any residual hearing in the high frequency range. The transposition aids I wore put high frequency sounds into the low frequency range I had residual hearing in. I could tell the difference between high and low frequency sounds. However, I was hearing the high frequency sounds as low frequency sounds. A bit confusing.

Now, all of the sudden I’m able to hear high frequency sounds that are NOT being compressed/transposed into low frequency sounds after 25 years of never ever hearing these sounds. I do have to admit that at a certain point before going through with the CI surgery I did wonder if my brain would even be able to process any high frequency sounds.

So now it’s almost like a personal battle with my CI. This torture device may have won Tuesday afternoon but I won Monday, Wednesday, and today. I have had it on for about 10 hours without any breaks, although I think it’s time to give myself a break. 😉

Kelly: 3
Torture Device (aka CI): 1

The war’s on and I’m going to win! 😉

On a side note this is normal for someone with my background and it supposedly gets better with time.

Learning To Tolerate Sounds

Basically at this point I’m just focusing on tolerating sounds. Yesterday went so much better than Tuesday afternoon. I couldn’t really handle wearing it Tuesday afternoon and had to leave it off for most of the afternoon. I think part of it was just that I was so mentally drained from my brain working to rewire itself.

I started fresh yesterday morning and was able to work up from P1 to P3 (increasing volumes from P1 to P4). I did finally turn the sound back on my laptop; I had it off Monday and Tuesday. However I set the volume at about 35-40 when I usually had it at 100 with my hearing aids. That just goes to show how sensitive I have been to sounds. I was able to tolerate the CI all yesterday afternoon and evening. I did take a couple of breaks and took it off twice for about half an hour at a time.

I do have a bit of ringing for a few minutes after I take it off. Probably just from all the stimulation.

I actually have it on P2 right now and my laptop volume has been set at 80-100. I may have to take it off in a bit to do some work. I’m not quite to the point where I can tolerate it well enough to wear it while being able to focus on something else. It’s just too distracting. I can barely follow a conversation with someone when I have it on, let alone reading genetic stuff with it on.

As much as I want to take it off…at the same time I don’t want to. It’s just the worst feeling whenever I have to put it back on…the first few seconds are just such a shock to my poor nerve system. It’s almost easier to just leave it on so I don’t have to experience that feeling every time I put it back on after taking a break. Plus I have to start over again and work my way up from P1 to P4 every time I put it back on. I should be comfortable with P3 or P4 by the time I go in for mapping this coming Tuesday. I usually have it on P2 or P3 (P1 is the quieter program and P4 is the louder one).

This wears me out.

Music and CI

Erhmm…I’m a bit blog happy today. In other words, I’m bored.

Remember that post yesterday about how I miss listening to music and I didn’t even want to try to listen to it for a long time with the CI.

I lied.

Well, not really.

I caved in.

I’ve read some conflicting views about CI and music. Some say it can be difficult to develop an appreciation for music with CIs but I don’t know the reasons behind it. If it has to do with how the CI processes sound itself or what. I do have several friends with CIs who enjoy music so it is possible.

Anyways, I couldn’t resist. Curiosity got better of me.

I picked out 2 familiar songs on youtube and turned the volume WAYYY down on my laptop because I’m very sensitive to sounds right now. I don’t think I’ve ever had the volume down this low when listening to music.

Let’s just say…it’s very umm interesting…

I was already familiar with the beats of those 2 particular songs (The White Stripes and The Ting Tings) which helped.

I can’t tell the voices from the instruments. It’s just a pulsing sensation that corresponds with the beats unless there’s a lot of varying beats (then it no longer corresponds with the beats because it’s overloading) at the same pitch.

Weird.

I think 2 songs are enough for now, lol. I can only take so much at a time!