Right now, my audiologist just wants me to get used to the noises I hear. So over the next two weeks (next appointment is September 8th), I need to work on increasing the volume of my cochlear implants every day.
Basically, each cochlear implant has room for four programs. Whenever a person goes in for a mapping (a session to change the settings of the cochlear implant), four programs are typically set. You start with the first one, then when the first one has been.."mastered", you move on to the next one, etc.
Right now my programs are set so that each program is louder than the previous one. So program one is the softest level of sounds, especially when put at volume one. Over the course of the next couple of days, I am to increase the volume gradually to give my brain time to adjust to the comfort level/noise level. Currently I am at a volume 6 (starting with a volume 5 at the appointment). I can go up to volume 10. So, from now until September 8th, I basically need to make it up 34 volume bars (10 volume bars for each program, I'm on number 6 for program 1, so only 4 left on that one, then 10 more for program 2, 10 more for program 3, and 10 more for program 4). So I really will be constantly adjusting my volume very day to try and build up that loudness and for my brain to handle it.
There's also a sensitivity level, but that will not be the focus for now. The sensitivity level is basically how far away I'll be able to detect sounds. The lower the number, the closer things have to be to my physically for me to be able to detect the sound, the higher the number, the further away the cochlear implant will pick up the sound. People do not go the highest number in general as it picks up too much background noise, and becomes a lot more difficult to understand the noises in the environment. We have my sensitivity levels set on what the average cochlear implant user has it on (12-14).
SO, over the course of the next two weeks, I am just practicing listening to sounds, trying to figure out what is what, and getting used to the loudness. Over time the squeakiness should go away (over the course of the next few days), and things will start sounding more normal.
Wednesday, August 25, 2010
The first 6-7 hours of what I've been hearing
So, at first, everything was just noise with the basic barely distinguishable sound for speech. There was at first no difference between Bryan's voice and the audiologist's voice. They were both squeaky with a hint of "normal." When we went to the front desk to schedule my next appoint, we went out in the hall, and the first thing I noticed was the clomping of the audiologist's shoes on the tile floor.
We then got in the car, and Bryan had the radio on. I could tell it was a person talking right at first. Then music started playing, and it sounded like static. We had to go straight to Heber to pick up Kiernan from my parents who had been watching him for the day (THANK YOU SO MUCH!). Near the end of the car ride, I could start detecting the beat of the music, especially the sounds of the more obvious drums, but still had difficulty with telling when a person was singing.
We then got to my parent's and I started noticing the things that seemed really really loud to me:
Crinkling of foil, dog toenails on the tile/wood/cement, crinkling of paper, "pssshhhh" of a soda being opened, breathing really sharply through your nose. I could also hear the click of the blinker REALLY well, and the clicking of texting on my phone.
I also started being able to differentiate between voices towards the end of us being there. My dad I could differentiate more than anyone else's which was a weird thing for me. Kiernan wasn't too hard, but he's still really difficult for me to hear at all. Bryan's is getting easier to detect, and my mom's was just more female than any one else's.
Then we went home. By the end of the ride I was definitely differentiating the singing from the music, and was starting to hear strong sounds of the guitar.
We got home, and Kiernan was insisting to play outside, so I went outside with him since Bryan was kind enough to get up early with him to let me sleep a bit more.
Wow. Was that noisy. I had no idea where some sounds were coming from, At. All. I thought I kept hearing birds chirping, but then I realized it was Kiernan laughing with another kid. I kept hearing this weird sound that seemed to happen regularly, to find that it was the older kids crashing the wagons into the tables (they were definitely having fun). Talked to a couple of people, and could still definitely detect voices. Just over all though, it was noisy and busy.
I came inside, got Kiernan ready for bed, watched TV a bit while he finished his milk. Noticed that the tv now sounds a lot like I heard it when I wasn't paying attention to it at all and the volume was low (lots of sssshhh and mumbling type sounds). I took Kiernan to bed, read a story to him and sang a song. It was definitely weird to hear me attempting to sing again. I sang every time I put him to bed in between the surgery and now, it was just weird to "hear" it again.
He went to bed, and then I got busy with taking pictures and updating. I can definitely hear the clicking of they keyboard as I type better than I can hear anything else. Basically, if it's a higher pitch sound, I'll hear it better than anything else right now.
So the over all progress:
I can discriminate speech from general noise.
There's no more completely squeaky voices.
With both ears on, things are sounding more normal.
I no longer hear the clicking in the background in my right ear.
Weird things: "hearing" things is definitely a different feeling this time around. When the implants were first turned on, it seemed like I was feeling things more than I was hearing things. This is still true from time to time.
I keep going to push my hearing aid mold in since I'm still hearing higher sounds and my brain is automatically translating that into hearing aid squeals. Imagine my surprise every time I actually feel my finger IN my hear. Weird, I tell you, weird.
There have been no disappointments. I came in not really knowing what to expect, and I'm glad I came in that way then I could not be disappointed or devastated. I had very low expectations if at all, so I'm happy with them so far.
We then got in the car, and Bryan had the radio on. I could tell it was a person talking right at first. Then music started playing, and it sounded like static. We had to go straight to Heber to pick up Kiernan from my parents who had been watching him for the day (THANK YOU SO MUCH!). Near the end of the car ride, I could start detecting the beat of the music, especially the sounds of the more obvious drums, but still had difficulty with telling when a person was singing.
We then got to my parent's and I started noticing the things that seemed really really loud to me:
Crinkling of foil, dog toenails on the tile/wood/cement, crinkling of paper, "pssshhhh" of a soda being opened, breathing really sharply through your nose. I could also hear the click of the blinker REALLY well, and the clicking of texting on my phone.
I also started being able to differentiate between voices towards the end of us being there. My dad I could differentiate more than anyone else's which was a weird thing for me. Kiernan wasn't too hard, but he's still really difficult for me to hear at all. Bryan's is getting easier to detect, and my mom's was just more female than any one else's.
Then we went home. By the end of the ride I was definitely differentiating the singing from the music, and was starting to hear strong sounds of the guitar.
We got home, and Kiernan was insisting to play outside, so I went outside with him since Bryan was kind enough to get up early with him to let me sleep a bit more.
Wow. Was that noisy. I had no idea where some sounds were coming from, At. All. I thought I kept hearing birds chirping, but then I realized it was Kiernan laughing with another kid. I kept hearing this weird sound that seemed to happen regularly, to find that it was the older kids crashing the wagons into the tables (they were definitely having fun). Talked to a couple of people, and could still definitely detect voices. Just over all though, it was noisy and busy.
I came inside, got Kiernan ready for bed, watched TV a bit while he finished his milk. Noticed that the tv now sounds a lot like I heard it when I wasn't paying attention to it at all and the volume was low (lots of sssshhh and mumbling type sounds). I took Kiernan to bed, read a story to him and sang a song. It was definitely weird to hear me attempting to sing again. I sang every time I put him to bed in between the surgery and now, it was just weird to "hear" it again.
He went to bed, and then I got busy with taking pictures and updating. I can definitely hear the clicking of they keyboard as I type better than I can hear anything else. Basically, if it's a higher pitch sound, I'll hear it better than anything else right now.
So the over all progress:
I can discriminate speech from general noise.
There's no more completely squeaky voices.
With both ears on, things are sounding more normal.
I no longer hear the clicking in the background in my right ear.
Weird things: "hearing" things is definitely a different feeling this time around. When the implants were first turned on, it seemed like I was feeling things more than I was hearing things. This is still true from time to time.
I keep going to push my hearing aid mold in since I'm still hearing higher sounds and my brain is automatically translating that into hearing aid squeals. Imagine my surprise every time I actually feel my finger IN my hear. Weird, I tell you, weird.
There have been no disappointments. I came in not really knowing what to expect, and I'm glad I came in that way then I could not be disappointed or devastated. I had very low expectations if at all, so I'm happy with them so far.
The materials I received
All right, this is mostly a picture post of what I received. I had *NO* idea just how much stuff I would be getting. Holy moly. Also, note, some of you may be very familiar with what one gets, or how cochlear implants look on a head, I have some friends that have never seen one, so everything is posted here :)
First we'll start off with the cool part, my cochlear implants and how they look on my head.
The cochlear implants
One of them on my head (they look the same on both sides):
The cochlear implants with my "pretty" covers (They were free, and believe me, they were the best choice for me from the selection I had):
The pretty cover cochlear implant on my head:
The two boxes I got:
The very top layer of the box (both boxes are the same):
The bottom layer of the box:
The bottom layer of the box spread out:
So that's all the stuff I got.
Here's what I can remember from memory what's in the boxes (remember, it's kind of late...and I'm a bit overwhelmed):
Back up processors, back up magnet/head pieces, back up coils, back up ear hooks, microphone protectors, zinc batteries, batter compartments (for the zinc batteries), battery covers (for the zinc batteries), rechargeable batters, compact rechargeable batteries, battery recharger, plugs for battery recharger, remote control, plugs for recharging remote control, cochlear implant "headphones" for battery operated things, cochlear implant "headphones" for plug in the wall things, auditory rehabilitation cd, remote control cd, poster for a quick start of basics, cochlear implant dryer (not a machine, just dries out the water that's accumulated in the processors), dryer..stuff, advertisements, lots of reading material, the "pretty" covers, cases for carrying implants, belt clip or neck loop for remote, user manual.
I think that covers it. Just remember, everything is times 2, since I have 2 cochlear implants.
First we'll start off with the cool part, my cochlear implants and how they look on my head.
The cochlear implants
One of them on my head (they look the same on both sides):
The cochlear implants with my "pretty" covers (They were free, and believe me, they were the best choice for me from the selection I had):
The pretty cover cochlear implant on my head:
The two boxes I got:
The very top layer of the box (both boxes are the same):
The bottom layer of the box:
The bottom layer of the box spread out:
So that's all the stuff I got.
Here's what I can remember from memory what's in the boxes (remember, it's kind of late...and I'm a bit overwhelmed):
Back up processors, back up magnet/head pieces, back up coils, back up ear hooks, microphone protectors, zinc batteries, batter compartments (for the zinc batteries), battery covers (for the zinc batteries), rechargeable batters, compact rechargeable batteries, battery recharger, plugs for battery recharger, remote control, plugs for recharging remote control, cochlear implant "headphones" for battery operated things, cochlear implant "headphones" for plug in the wall things, auditory rehabilitation cd, remote control cd, poster for a quick start of basics, cochlear implant dryer (not a machine, just dries out the water that's accumulated in the processors), dryer..stuff, advertisements, lots of reading material, the "pretty" covers, cases for carrying implants, belt clip or neck loop for remote, user manual.
I think that covers it. Just remember, everything is times 2, since I have 2 cochlear implants.
Tuesday, August 24, 2010
Activation Day
All right. It's been a long evening :) You're lucky I'm posting this now, but most of you won't read this tonight anyway :)
So we went, and first did a sound booth test before anything else. Turns out, I can still hear some very high sounds when they are really loud. So, maybe I wasn't imagining some sounds after all. But I can only hear them in my right ear. I heard NOTHING in my left ear. It was a short test...maybe 10 minutes. I guess this is a new thing, as they have started doing what is called a soft insertion of the implant device in my head (basically, they try to be as careful as possible, so that some natural hearing can be preserved).
Then we went to the room with the chair and all the equipment to look at your ears, etc. The nurse came in and checked my scars, and found that there was a stitch left in each incision, so she trimmed them down as they were poking out. I was glad to find this out, as I thought maybe I had a skin tag growing, and it was annoying. Now, I don't feel that "skin" anymore, YAY!
Finally, we meet up with the audiologist who was doing my activation. First we talked about some confusion, and I basically got to determine who would do my activation, and I chose the one who came to see me...as she was going to do it anyway. Then there was a student observing the session today. That had to be an exciting one for him, an adult who was doing a simultaneous bilateral cochlear implant, and on activation day to boot.
She then said she really wanted to push me through this process. I'm SO okay with that :)
We first did my left ear. She checked the magnet strength. The level 2 magnet was not strong enough, so she put it to a level 3 magnet. That seemed to work.
She put the magnet on, and I was very surprised to find that I could barely even feel the magnet there. That was a good thing, I expected it to be a constant annoying feeling. So that was another plus. Then she did a check to make sure all the electrodes were working, and they were working just fine. Then she did a check to so see if the auditory nerve was "catching" the specific electrodes that were being turned on. It all looked good, so we proceeded. Next, she had me count the number of beeps that happened to establish the threshold level. Basically, we wanted to see how quiet the beeps could be with me still counting the correct number of beeps. Got that established. Then we wanted to establish the comfort level, or basically the loudness level that I was comfortable hearing at. She did a series of beeps until I thought it was comfortable. Then she turned on the implant. It was a bit too loud, so she turned it off, and adjusted it, then turned it on again. It was better, but was I surprised to even tell that a person was talking.
At first I could NOT make out what the heck the squeaking noise was. After a few moments, I realized it was the audiologist talking. Honestly, it sounded exactly like the wii fit board that "talks" to you on wii fit. If you haven't heard that, then the best comparison I can make is a mouse squeaking. It was really weird. Then she had me do a listening test where I had to name a day of the week that she had said. I got them all right, which REALLY surprised me, she said all of them except for Friday. She said that was great, and then programmed the back up processor for my left ear.
We then went to the right ear. Same process. Magnet on, checked the electrodes, did the clicking sounds, did the threshold level and comfort level. This time I really was off on the comfort level with the beeps for my right ear. She turned it on, and boy howdy, was that loud. She quickly turned it off, and I loved that she turned to tell the student that this was precisely why she kept the mouse over the "off" button, for reactions like mine when something was too loud. We then turned it on again, and it was all good, except I kept hearing clicking in the background. Kind of like hearing an AC going in the background, but you can still pick up speech over the AC hum, except this was clicking. She tried some adjustments and made it so that it wasn't so prominent, but it was still there. She didn't want to turn it down any less if she didn't have to as she wanted to keep the auditory stimulation there, which was fine with me. It was definitely a sound I could deal with without going crazy.
We then the did the days of the week test again. I got them all right except for the last one. I just could NOT figure out what she was saying. I went through them in my head, and none of them sounded right. I went through Monday, Tuesday, Wednesday, Thursday, Saturday, Sunday in my head...and it didn't sound like any of them. I just could not figure it out, so I guessed. Turns out it was Friday...which I didn't even THINK about. So I felt better once I realized she hadn't said it before, and that it was just one I couldn't remember in my head. She then said it was good, and programmed the right ear back up processor. As for what things sounded like, it was definitely NOT squeaky. So bizarre. It's closer to what I was hearing before the surgery. Not quite the same though. It's definitely more mechanical, and I can't quite make out what people are saying without reading their lips.
Then we had them both on at the same time. That was a really confusing moment at first. Combining squeaky talk with more normal talk...mechanical and hearing all the background noise as well. Talk about a sensory overload.
Anyway, I've kept them both on since then. Another post will be coming about what I've noticed throughout the day, and what I think has improved and what has not.
I'll also be doing a picture post of all the materials I got (think two thick briefcase size boxes full of a lot of stuff).
So we went, and first did a sound booth test before anything else. Turns out, I can still hear some very high sounds when they are really loud. So, maybe I wasn't imagining some sounds after all. But I can only hear them in my right ear. I heard NOTHING in my left ear. It was a short test...maybe 10 minutes. I guess this is a new thing, as they have started doing what is called a soft insertion of the implant device in my head (basically, they try to be as careful as possible, so that some natural hearing can be preserved).
Then we went to the room with the chair and all the equipment to look at your ears, etc. The nurse came in and checked my scars, and found that there was a stitch left in each incision, so she trimmed them down as they were poking out. I was glad to find this out, as I thought maybe I had a skin tag growing, and it was annoying. Now, I don't feel that "skin" anymore, YAY!
Finally, we meet up with the audiologist who was doing my activation. First we talked about some confusion, and I basically got to determine who would do my activation, and I chose the one who came to see me...as she was going to do it anyway. Then there was a student observing the session today. That had to be an exciting one for him, an adult who was doing a simultaneous bilateral cochlear implant, and on activation day to boot.
She then said she really wanted to push me through this process. I'm SO okay with that :)
We first did my left ear. She checked the magnet strength. The level 2 magnet was not strong enough, so she put it to a level 3 magnet. That seemed to work.
She put the magnet on, and I was very surprised to find that I could barely even feel the magnet there. That was a good thing, I expected it to be a constant annoying feeling. So that was another plus. Then she did a check to make sure all the electrodes were working, and they were working just fine. Then she did a check to so see if the auditory nerve was "catching" the specific electrodes that were being turned on. It all looked good, so we proceeded. Next, she had me count the number of beeps that happened to establish the threshold level. Basically, we wanted to see how quiet the beeps could be with me still counting the correct number of beeps. Got that established. Then we wanted to establish the comfort level, or basically the loudness level that I was comfortable hearing at. She did a series of beeps until I thought it was comfortable. Then she turned on the implant. It was a bit too loud, so she turned it off, and adjusted it, then turned it on again. It was better, but was I surprised to even tell that a person was talking.
At first I could NOT make out what the heck the squeaking noise was. After a few moments, I realized it was the audiologist talking. Honestly, it sounded exactly like the wii fit board that "talks" to you on wii fit. If you haven't heard that, then the best comparison I can make is a mouse squeaking. It was really weird. Then she had me do a listening test where I had to name a day of the week that she had said. I got them all right, which REALLY surprised me, she said all of them except for Friday. She said that was great, and then programmed the back up processor for my left ear.
We then went to the right ear. Same process. Magnet on, checked the electrodes, did the clicking sounds, did the threshold level and comfort level. This time I really was off on the comfort level with the beeps for my right ear. She turned it on, and boy howdy, was that loud. She quickly turned it off, and I loved that she turned to tell the student that this was precisely why she kept the mouse over the "off" button, for reactions like mine when something was too loud. We then turned it on again, and it was all good, except I kept hearing clicking in the background. Kind of like hearing an AC going in the background, but you can still pick up speech over the AC hum, except this was clicking. She tried some adjustments and made it so that it wasn't so prominent, but it was still there. She didn't want to turn it down any less if she didn't have to as she wanted to keep the auditory stimulation there, which was fine with me. It was definitely a sound I could deal with without going crazy.
We then the did the days of the week test again. I got them all right except for the last one. I just could NOT figure out what she was saying. I went through them in my head, and none of them sounded right. I went through Monday, Tuesday, Wednesday, Thursday, Saturday, Sunday in my head...and it didn't sound like any of them. I just could not figure it out, so I guessed. Turns out it was Friday...which I didn't even THINK about. So I felt better once I realized she hadn't said it before, and that it was just one I couldn't remember in my head. She then said it was good, and programmed the right ear back up processor. As for what things sounded like, it was definitely NOT squeaky. So bizarre. It's closer to what I was hearing before the surgery. Not quite the same though. It's definitely more mechanical, and I can't quite make out what people are saying without reading their lips.
Then we had them both on at the same time. That was a really confusing moment at first. Combining squeaky talk with more normal talk...mechanical and hearing all the background noise as well. Talk about a sensory overload.
Anyway, I've kept them both on since then. Another post will be coming about what I've noticed throughout the day, and what I think has improved and what has not.
I'll also be doing a picture post of all the materials I got (think two thick briefcase size boxes full of a lot of stuff).
Saturday, August 21, 2010
Two weeks, sorry!
So I have had a couple of people nudge me and remind me that I have not posted. :) I've been gone, and have had a difficult time accepting that I've been back in reality for a week.
My last post was about dizziness and finding out what made me dizzy, and was just a couple of days before I flew out to DC/Maryland for a Cued Speech Retreat. My dizziness had actually decreased a LOT over the two days.
I went to security at the airport, told them I had implants and went into the "special line" and went through the new micro something technology where it's kind of like an x-ray of you. No problem, but now I've got my sister telling me that her doctor not to said to go through that at all. I'll have to ask about it at my activation appointment. I then got gum, and chewed it like crazy once I boarded the plane, as the surgery directions had said that if I were going to fly, to do so to help my ears "naturally" pop. The verdict? No popping, no pain and no dizziness. It was a very smooth flight. It was the same story for the flight home. The only time I got dizzy during that trip was when my friends, Chance and Jenny, gave me a tour of the capitol in DC. The dome...very big. Looking up at the top made me very dizzy. Chance thought ahead and told me to go up the stairs looking down, and to wait until I sat down before looking up. I'm very glad he did, cause boy oh boy that made me dizzy. It went away quickly though.
Then I got home Monday night. Bryan picked me up, we dropped our son off and went to see Inception at the rear window caption theater in South Jordan. Great movie. Not why I brought it up though. It was so freaking loud, that I'm SURE I actually HEARD some of the movie. It wasn't all in my head, I'm pretty darn sure that I actually heard them talking here and there in the movie. That was weird. Then we came home, and packed for Lake Powell and went to bed.
We left the next morning (Tuesday) to go to Lake Powell. I was nervous about that with staying on a house boat, and with having a 21 month old with us there from Tuesday to Saturday. Overall, no dizziness or motion sickness! It really is gone! The only time I got dizzy was when we were hiking back to the boat from Rainbow Bridge, and there was a very steep hill. Other than that, nothing. I was pleasantly surprised. It was a wonderful trip. No access to technology and no service on the cell phone, it was truly a break from reality.
Then I came home :( Both Bryan and I agreed that Lake Powell was too short. Kiernan did so well there (probably because he's used to our TINY apartment...seriously about the same size as the houseboat...it wasn't a fancy house boat). I was just glad we were able to be on a houseboat for this visit, as I'm not sure how Kiernan would've handled sleeping on the ground with a sleeping bag in a tent.
Anyway, we got back late Saturday night, and slept a lot on Sunday. I went back to work on Monday (technically still on vacation, but things need to get done!). And this entire week has been easy in terms of the implants. No dizziness, period. Awesome.
Now as for the silence? I'm starting to get more ringing in the ears type things than "hearing" the sounds that should be coming from the people/objects. The weirdest "ringing" type thing that's been going on constantly? Dial Up connection sounds. 13 or 14 years ago, my parents had dial up connection, and I was addicted to the internet, so I was constantly connecting. When the computer would connect, it would make that screeching and crashing noise. That's what I hear quite often, BUT only in my RIGHT ear. My left ear has the actually ringing sound, and never the dial up sound. Weird right?
It's getting harder to "remember" what the sounds are of some things. I KNOW what they are, but they're not as easy to "hear" anymore.
The thing that's been the hardest and most confusing for me this week? Not hearing my own voice. For work, I've met some new families to help them with the orientation process. THis means I've never actually heard the names pronounced, and some of them, I have NO idea how to pronounce them. I went to one home, and asked how to say the name, my interpreter did the best she could (No cued speech transliterators were readily available) to help with the pronunciation of the name, and I repeated it back. I got it right, but I still felt somewhat at a loss, because I couldn't REALLY confirm with my OWN hearing that I said it right. I had trust the mom, and I sure hope she was honest!
For church, I did some visits with some people, and everyone is hearing around here, and well aware of my needs as I have no hearing. I really appreciate the kindness of everyone. During these visits with some people, it was really hard for me to not hear my voice while I was talking. I think it's because I'm still very self-conscious of whether I'm too loud or too quiet. Mmmm...I've just decided that is a part of it, but the other part is that I'm afraid my speech quality may have gone down, but I have no way of truly knowing myself. I have to rely on other people to know. That's a hard thing to do.
That's all that's really happened in the past two weeks in terms of implants. A really exciting thing though? My sister-in-law had a baby girl yesterday! Apparently she showed up at the hospital at 5:15 and the baby girl was born at 5:22. Amazing, hopefully my future birth(s) will be that way :).
My activation date is on Tuesday, August 24th. The post-op appointment is at 2, and the activation appointment is at 2:30. Then I fly out to Chicago for my fellowship meeting on the 26th. Then I'm "officially" back at work visiting ALL of my families on the 30th. It's gonna be a whirlwind week next week.
My last post was about dizziness and finding out what made me dizzy, and was just a couple of days before I flew out to DC/Maryland for a Cued Speech Retreat. My dizziness had actually decreased a LOT over the two days.
I went to security at the airport, told them I had implants and went into the "special line" and went through the new micro something technology where it's kind of like an x-ray of you. No problem, but now I've got my sister telling me that her doctor not to said to go through that at all. I'll have to ask about it at my activation appointment. I then got gum, and chewed it like crazy once I boarded the plane, as the surgery directions had said that if I were going to fly, to do so to help my ears "naturally" pop. The verdict? No popping, no pain and no dizziness. It was a very smooth flight. It was the same story for the flight home. The only time I got dizzy during that trip was when my friends, Chance and Jenny, gave me a tour of the capitol in DC. The dome...very big. Looking up at the top made me very dizzy. Chance thought ahead and told me to go up the stairs looking down, and to wait until I sat down before looking up. I'm very glad he did, cause boy oh boy that made me dizzy. It went away quickly though.
Then I got home Monday night. Bryan picked me up, we dropped our son off and went to see Inception at the rear window caption theater in South Jordan. Great movie. Not why I brought it up though. It was so freaking loud, that I'm SURE I actually HEARD some of the movie. It wasn't all in my head, I'm pretty darn sure that I actually heard them talking here and there in the movie. That was weird. Then we came home, and packed for Lake Powell and went to bed.
We left the next morning (Tuesday) to go to Lake Powell. I was nervous about that with staying on a house boat, and with having a 21 month old with us there from Tuesday to Saturday. Overall, no dizziness or motion sickness! It really is gone! The only time I got dizzy was when we were hiking back to the boat from Rainbow Bridge, and there was a very steep hill. Other than that, nothing. I was pleasantly surprised. It was a wonderful trip. No access to technology and no service on the cell phone, it was truly a break from reality.
Then I came home :( Both Bryan and I agreed that Lake Powell was too short. Kiernan did so well there (probably because he's used to our TINY apartment...seriously about the same size as the houseboat...it wasn't a fancy house boat). I was just glad we were able to be on a houseboat for this visit, as I'm not sure how Kiernan would've handled sleeping on the ground with a sleeping bag in a tent.
Anyway, we got back late Saturday night, and slept a lot on Sunday. I went back to work on Monday (technically still on vacation, but things need to get done!). And this entire week has been easy in terms of the implants. No dizziness, period. Awesome.
Now as for the silence? I'm starting to get more ringing in the ears type things than "hearing" the sounds that should be coming from the people/objects. The weirdest "ringing" type thing that's been going on constantly? Dial Up connection sounds. 13 or 14 years ago, my parents had dial up connection, and I was addicted to the internet, so I was constantly connecting. When the computer would connect, it would make that screeching and crashing noise. That's what I hear quite often, BUT only in my RIGHT ear. My left ear has the actually ringing sound, and never the dial up sound. Weird right?
It's getting harder to "remember" what the sounds are of some things. I KNOW what they are, but they're not as easy to "hear" anymore.
The thing that's been the hardest and most confusing for me this week? Not hearing my own voice. For work, I've met some new families to help them with the orientation process. THis means I've never actually heard the names pronounced, and some of them, I have NO idea how to pronounce them. I went to one home, and asked how to say the name, my interpreter did the best she could (No cued speech transliterators were readily available) to help with the pronunciation of the name, and I repeated it back. I got it right, but I still felt somewhat at a loss, because I couldn't REALLY confirm with my OWN hearing that I said it right. I had trust the mom, and I sure hope she was honest!
For church, I did some visits with some people, and everyone is hearing around here, and well aware of my needs as I have no hearing. I really appreciate the kindness of everyone. During these visits with some people, it was really hard for me to not hear my voice while I was talking. I think it's because I'm still very self-conscious of whether I'm too loud or too quiet. Mmmm...I've just decided that is a part of it, but the other part is that I'm afraid my speech quality may have gone down, but I have no way of truly knowing myself. I have to rely on other people to know. That's a hard thing to do.
That's all that's really happened in the past two weeks in terms of implants. A really exciting thing though? My sister-in-law had a baby girl yesterday! Apparently she showed up at the hospital at 5:15 and the baby girl was born at 5:22. Amazing, hopefully my future birth(s) will be that way :).
My activation date is on Tuesday, August 24th. The post-op appointment is at 2, and the activation appointment is at 2:30. Then I fly out to Chicago for my fellowship meeting on the 26th. Then I'm "officially" back at work visiting ALL of my families on the 30th. It's gonna be a whirlwind week next week.
Thursday, August 5, 2010
Purposeful Dizziness, yes vs. no
My dizziness has decreased immensely the past couple of days, thank heavens. I have been paying a lot more attention as to what exactly makes me dizzy. Turning quickly, getting up too fast, bending at my waist for too long rather than my knees, you know, typical stuff.
Then one more thing.
Nodding my head yes.
Do you think that says something about me as a mother? I don't get dizzy from shaking my head no anymore, at all, it's not even a problem anymore. But I do get quite dizzy from nodding my head yes.
I do have a toddler....:)
Then one more thing.
Nodding my head yes.
Do you think that says something about me as a mother? I don't get dizzy from shaking my head no anymore, at all, it's not even a problem anymore. But I do get quite dizzy from nodding my head yes.
I do have a toddler....:)
Wednesday, August 4, 2010
Been a few days
It has been a few days since I blogged, however, if you read up at the very top I put in my disclaimer "I make no promise to be consistent." It's very true :)
So last time I blogged, it was all about dizziness. It hasn't really stopped. I have a airplane trip this weekend, and will be on a houseboat next week (this was a pre-planned vacation before the CI surgery was determined, so if y'all think I'm just taking advantage of the time off for recovery, this was already planned :P). I was dizzy every day at work last week. I didn't drive again until yesterday. Friday was even more dizziness, but I still got to see my mother in Heber and we had a short chat, and then I went home, and I believe I crashed on the couch at 9:30. I believe my husband told a friend of ours that I fell asleep on the couch with the tivo remote pointed to the tv. I actually fell asleep in the midst of trying to fast forward through commercials. I was exhausted from all the training at work and the dizziness was just especially killer.
Saturday was no different, I was dizzy then as well. This became a concern because I'm about to fly next week and I really don't want to add motion sickness to the dizziness from the flight or from the houseboat week. So, I put in a request for a prescription refill so that I would have enough while I was gone and not run out.
Sunday, I just felt sick all over and was dizzy as well, so we stayed home to help me take it easy. I slept, A LOT.
Monday, I met with some ladies from work to do some additional training and set up my office, and the dizziness had actually subsided quite a bit, and I was able to drive to the office (which is literally maybe 5-10 minutes from my place, so really, no big deal).
Tuesday (today), the doctor's office called (and I received an e-mail saying my prescription couldn't be refilled) to ask about my symptoms. The nurse was concerned because she said it had been over a month since my surgery (it's been two weeks and one day). So Bryan called back and told them the correct number of days, and then the nurse called back asking what kind of dizziness I've been experience and asked lots of questions and said she would call back later after consulting with the doctor. She then called back not too much later, and said the doctor wanted to see me. Freaky right? I suddenly think I've done something horrible requesting more of the meds, or actually have something wrong with me. I then think maybe, just maybe he'll see this as the post-op and move the activation date up (highly doubtful though).
So, we had a couple of hours to kill and went to Wheeler farm. Holy hot day, and that did not help with dizziness at all. I had been fine all day, up until I took a hot bath, and then added this heat. I then became dizzy, so just in time for the doctor right? This is when I realize that if I am still dizzy, then I'm pretty darn sure he won't move the activation date up :)
We go, and we sit down, we talk about what I've been experiencing. I finally think of the right description of dizziness. The nurse kept asking me if it was the room spinning kind of dizziness. Well..sometimes it is, and when it is that, it's for a brief moment until I sit down. Literally like 3-4 seconds long. However, the rest of the dizziness is this: Imagine you're sitting down, then you stand up way too fast and get lightheaded. You know that kind of dizziness/disorientation. *THAT* is the perfect thing to use to describe how I feel the majority of the time. Sometimes it's really intense, sometimes it's not so bad and I can function just fine with the annoying lightheadedness/dizziness.
So what does the doctor tell me?
I need to purposefully make myself dizzy if it happens with certain things. Did your jaw just drop, or your eyebrows go up in confusion? Yeah, ours did too. I'm also to not use the medication if I can help it (I'm already doing this, I don't like taking medication). The proof of me not taking it all the time? I was allowed 15 pills the day of the surgery. You can take it every 6 hours. It has been 15 days, and I still have 6 or 7 pills left, and the majority of the pills I did take were within the first 3 days. So yeah, proof that I try not to use it if I can help it.
Anyway, back to the point. Purposeful dizziness? Basically since the doctor had been in my inner ear (where your equilibrium is), it's really messed up my brain's ability to match the fluids in my inner ear to what I'm actually seeing and feeling. That smoothness of the fluids in my inner ear has been disrupted, on both sides, not just one. So double whammy.
However, the best way to solve the dizziness? Let it go away. My brain is relearning how to match up what I see and actually feel to the movement of the fluids in my inner ear. Taking the medication actually suppresses the body from being able to make that connection, so it takes longer to do so if I take the medication. So...yeah, don't take medication and make yourself dizzy.
No, I am not to go and start spinning in circles all the time, though I'm sure the people in my apartment complex court would LOVE to watch that and call me a crazy deaf lady outside. It'd be pretty funny :) But the things that do make me dizzy (looking up at something...like an airplane in the sky, turning my head left to right quickly...it used to be turning my head at all, but now it's just if I move it faster than I have been the past two weeks, bending over at my waist to picking something up instead of bending at my knees, crawling on the floor, picking up Kiernan), I am to keep doing as if it were normal just to help my brain readjust to the new movement of the fluids in my inner ear.
I hope that makes sense, and I did do research on it before going to the doctor. I just don't LIKE feeling dizzy/sick all the time, but I guess I'll just deal with it. So, no meds, do every day things that make me dizzy repeatedly. Only take meds if the dizziness is severely impairing my ability to function while doing something I *must* do (like work last week).
Otherwise, everything has been healing up nicely and there are no problems with the implants (even though you can feel a HUGE drop off on the side of skull right now. Go ahead, feel yours, it goes around nice and smooth on a curve, mine no longer does that. If you want to feel my head, I promise I won't think you're weird, it's quite different and kind of cool/weird to feel). He also checked the ear drum and middle ear, things look great there as well, completely clear of anything. So the good news out of all this? I'm healing very well and there are no infections that causing the dizziness.
Tomorrow I'm driving to Ogden for a meeting to satisfy the last of my Helen Keller fellowship. Yes, I am driving. I can actually move my head completely from side to side now, so that's not a concern while driving. And I can definitely handle driving a lot better now than I could last week. But I promise, if the dizziness is too severe in the morning, I will make Bryan take me :)
Now, the pictures as promised. The first one is the left ear and the second one is the right ear.
If you look at the last picture, you can see a bit where my hair was shaved. It's REALLY not noticeable at all. And the scars, they're almost right on that edge where your ear meets your head. So no one can see it. Seriously, vanity wise, this surgery was nothing.
So last time I blogged, it was all about dizziness. It hasn't really stopped. I have a airplane trip this weekend, and will be on a houseboat next week (this was a pre-planned vacation before the CI surgery was determined, so if y'all think I'm just taking advantage of the time off for recovery, this was already planned :P). I was dizzy every day at work last week. I didn't drive again until yesterday. Friday was even more dizziness, but I still got to see my mother in Heber and we had a short chat, and then I went home, and I believe I crashed on the couch at 9:30. I believe my husband told a friend of ours that I fell asleep on the couch with the tivo remote pointed to the tv. I actually fell asleep in the midst of trying to fast forward through commercials. I was exhausted from all the training at work and the dizziness was just especially killer.
Saturday was no different, I was dizzy then as well. This became a concern because I'm about to fly next week and I really don't want to add motion sickness to the dizziness from the flight or from the houseboat week. So, I put in a request for a prescription refill so that I would have enough while I was gone and not run out.
Sunday, I just felt sick all over and was dizzy as well, so we stayed home to help me take it easy. I slept, A LOT.
Monday, I met with some ladies from work to do some additional training and set up my office, and the dizziness had actually subsided quite a bit, and I was able to drive to the office (which is literally maybe 5-10 minutes from my place, so really, no big deal).
Tuesday (today), the doctor's office called (and I received an e-mail saying my prescription couldn't be refilled) to ask about my symptoms. The nurse was concerned because she said it had been over a month since my surgery (it's been two weeks and one day). So Bryan called back and told them the correct number of days, and then the nurse called back asking what kind of dizziness I've been experience and asked lots of questions and said she would call back later after consulting with the doctor. She then called back not too much later, and said the doctor wanted to see me. Freaky right? I suddenly think I've done something horrible requesting more of the meds, or actually have something wrong with me. I then think maybe, just maybe he'll see this as the post-op and move the activation date up (highly doubtful though).
So, we had a couple of hours to kill and went to Wheeler farm. Holy hot day, and that did not help with dizziness at all. I had been fine all day, up until I took a hot bath, and then added this heat. I then became dizzy, so just in time for the doctor right? This is when I realize that if I am still dizzy, then I'm pretty darn sure he won't move the activation date up :)
We go, and we sit down, we talk about what I've been experiencing. I finally think of the right description of dizziness. The nurse kept asking me if it was the room spinning kind of dizziness. Well..sometimes it is, and when it is that, it's for a brief moment until I sit down. Literally like 3-4 seconds long. However, the rest of the dizziness is this: Imagine you're sitting down, then you stand up way too fast and get lightheaded. You know that kind of dizziness/disorientation. *THAT* is the perfect thing to use to describe how I feel the majority of the time. Sometimes it's really intense, sometimes it's not so bad and I can function just fine with the annoying lightheadedness/dizziness.
So what does the doctor tell me?
I need to purposefully make myself dizzy if it happens with certain things. Did your jaw just drop, or your eyebrows go up in confusion? Yeah, ours did too. I'm also to not use the medication if I can help it (I'm already doing this, I don't like taking medication). The proof of me not taking it all the time? I was allowed 15 pills the day of the surgery. You can take it every 6 hours. It has been 15 days, and I still have 6 or 7 pills left, and the majority of the pills I did take were within the first 3 days. So yeah, proof that I try not to use it if I can help it.
Anyway, back to the point. Purposeful dizziness? Basically since the doctor had been in my inner ear (where your equilibrium is), it's really messed up my brain's ability to match the fluids in my inner ear to what I'm actually seeing and feeling. That smoothness of the fluids in my inner ear has been disrupted, on both sides, not just one. So double whammy.
However, the best way to solve the dizziness? Let it go away. My brain is relearning how to match up what I see and actually feel to the movement of the fluids in my inner ear. Taking the medication actually suppresses the body from being able to make that connection, so it takes longer to do so if I take the medication. So...yeah, don't take medication and make yourself dizzy.
No, I am not to go and start spinning in circles all the time, though I'm sure the people in my apartment complex court would LOVE to watch that and call me a crazy deaf lady outside. It'd be pretty funny :) But the things that do make me dizzy (looking up at something...like an airplane in the sky, turning my head left to right quickly...it used to be turning my head at all, but now it's just if I move it faster than I have been the past two weeks, bending over at my waist to picking something up instead of bending at my knees, crawling on the floor, picking up Kiernan), I am to keep doing as if it were normal just to help my brain readjust to the new movement of the fluids in my inner ear.
I hope that makes sense, and I did do research on it before going to the doctor. I just don't LIKE feeling dizzy/sick all the time, but I guess I'll just deal with it. So, no meds, do every day things that make me dizzy repeatedly. Only take meds if the dizziness is severely impairing my ability to function while doing something I *must* do (like work last week).
Otherwise, everything has been healing up nicely and there are no problems with the implants (even though you can feel a HUGE drop off on the side of skull right now. Go ahead, feel yours, it goes around nice and smooth on a curve, mine no longer does that. If you want to feel my head, I promise I won't think you're weird, it's quite different and kind of cool/weird to feel). He also checked the ear drum and middle ear, things look great there as well, completely clear of anything. So the good news out of all this? I'm healing very well and there are no infections that causing the dizziness.
Tomorrow I'm driving to Ogden for a meeting to satisfy the last of my Helen Keller fellowship. Yes, I am driving. I can actually move my head completely from side to side now, so that's not a concern while driving. And I can definitely handle driving a lot better now than I could last week. But I promise, if the dizziness is too severe in the morning, I will make Bryan take me :)
Now, the pictures as promised. The first one is the left ear and the second one is the right ear.
If you look at the last picture, you can see a bit where my hair was shaved. It's REALLY not noticeable at all. And the scars, they're almost right on that edge where your ear meets your head. So no one can see it. Seriously, vanity wise, this surgery was nothing.
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