Being Bionic

11:45 AM 4/30/2004 Today marks 30 days post-activation.
Using the implant seems to get a little easier over time. Voices are starting to sound a little more natural and different from each other. I am even beginning to hear the rise and fall of the pitch and volume in some people’s voices. I also notice it is getting easier to hear the singing in songs a little bit. Before all I could hear was the beat, now I am starting recognize other instruments and voices. I can even follow along to some of the songs I know! My favorite sound, though, is the dogs sniffing in my ear. It’s so cute!

Over the week, we did pratice with the “I Spy” book and on the phone. The “I Spy” book was easy for the most part, but I made the mistake one night of working with it at the end of a very long tiring day and I missed a lot of words and broke down crying, just not wanting to deal with it anymore. So I took it off and put it away for a while, and things have been ok since. As for the phone, it’s ok… if we stick to words I know are going to be said, I do decently. But I have a hard time getting any thing else… the fact that there’s background noise of the car when my husband calls me doesn’t help much either.

As far as the Meniere’s, the dizziness has been a little worse over the past week than it has been, but that could be due to stress and lack of sleep. The ringing isn’t as bad as it was last week, but still bothersome. I still have to start the day out on a really low volume and increase it gradually as the day goes on.

I also had my fourth mapping session yesterday. I go back in a month for another one. Dr. Wolfe told me that normally they wait 3 months before they bring someone back for another mapping after the fourth one, but since I made such a big jump in volume and changes yesterday, that they’d bring me back in a month and keep doing so until I don’t want to change things anymore. We did the same routine as always, and he tried me out on a different map again, also one I did not like. I stuck with the old one and he increased the volume, and that was pretty much it. There is no noise program this time since I haven’t been using those, instead I have 3 of the same program, but different volume levels.

I asked him to explain the names of programs I have been seeing on the CI lists online, such as MPS or CIS, and he said that I have the Hi-Res Technology which is different from the other implants. I guess he was trying to say mine doesn’t really use those kind of programs. He explained the difference between my implant and Cochlear’s Nucleus 24. He said that Cochlear’s has 24 (or something like that) electrodes, and mine has 12, but the difference is that mine is capable of using all 12 at the same time, and the Nucleus 24 can’t do that. HE also said that my implant was the only one that would be “upgradeable” so to speak, meaning that it could handle future technology that comes out, because at the current time it is only using about 10% of it’s current capabilities. That was really nice to hear! (Literally, hear… hehehe)

As usual, everything sounds weird again after the mapping session, worse than before I went in. I told Dr. Wolfe how this happens and it seems to end up being better after I get used to it, and he said that people say that happens to them a LOT and that it’s normal for things to sound worse at first then better. Before the mapping session, I was waiting in the waiting room talking to Tami and mentioned that doing an audio therapy right after getting a new map drove me nuts, because it was so difficult and I was already so tired from the mapping. So she said that we could drop the session for that day. That made me really happy, as I was even more tired than my normal! I would NOT reccomend to anyone that they do mappings and audio therapy sessions back to back, ever. Maybe not even on the same day.

Also before we went back to the mapping area, Dr. Wolfe put me in the booth to test my progress. We did the same tests as before and then a few extra. The same tests being where I raise my hand when I heard sounds, and then point to a card of pictures that corresponds with the word I hear. My husband said he was suprised becuase I was hearing sounds that even he could barely hear, and I nailed like 90% of the words I had to guess at from the card, and even noticed when the wrong word was said. Dr. Wolfe and Tami seemed impressed. Dr. Wolfe gave me a harder card to do, one where all the words were one syllable and they all started with “B” and sounded similiar. After we finished those, Dr. Wolfe came in with a funny look on his face and said I was doing REALLY good, better than expected, and I got 9 out of 12 of those.

So I guess just for fun he wanted to do an “open set” which is basically where I guess at what was said without ANY visual cues at all. He told me it would be really hard and not to worry about it if I couldn’t get any of them. These were sentences that had no relation to each other, but basic every day sentences like “What time is it” or “Where did you go”. The idea scared the crap out of me, but I actually ended up being able to guess correctly at a lot of them, even though there were a few where I only caught one word or didn’t get any of it. After that was over, Dr. Wolfe and Tami seemed even more impressed (both their faces had funny expressions… either shock or amazement or something) and he told me that I got 50% of the words, which was really impressive given the long time I had been deaf in that ear and the short time I had been activated. we talked about how in the past Dr. Wolfe had told me he didn’t think I would get much more than sound awareness in that ear, so he was impressed. He also brought up how he originally wanted me to implant my left ear, because he thought I’d be more successful with it. But I am still glad I implanted my right ear instead, because it’s working out decently, and like my husband said, it’s a good thing that I did so because if I had waited longer, it might not have done as well with an implant, and my hearing aid can hold the other ear over until I get that one implanted years from now.

I guess it’s something special in Dr. Wolfe’s experience, because he told us that he was thinking about getting my permission to use my files for writing a case study on me and my progress for a medical journal or something like that. That’s pretty cool… it must mean I am doing pretty good. My husband told me that Dr. Wolfe said that he’s personally never seen anyone make as much progress as I have. My husband thinks I blew everyone away, and told me later that evening that when we were walking out of the booth, all Tami could say was “wow, wow, wow”. He said even he was impressed, which is a lot coming from my husband. He doesn’t get impressed easily.

I am too afraid to think that the whole situation is that big of a deal, because I am afraid of thinking it is a bigger deal than it is. I always have a feeling of waiting for the other shoe to drop, because it usually does. I am still not sure what to think of it all, and whether or not I should allow myself to be estactic, but I was somewhat cautiously elated for the rest of the day. it’s nice to know that I am making good progress. It’s sort of motivation for me to keep going and working hard at it.

6:16 PM 4/19/2004 It has been about 2 1/2 weeks since activation. Last Thursday was my third mapping and second audio therapy session. Both appointments went decently, but they were tiring, especially since they were back-to-back and lasted an hour each! That’s a lot of listening.

The mapping appointment didn’t yield anything wonderful like I’d hope. I went hoping to get the volume increased because I figured I would hear a lot better that way, but I am not sure if he increased the volume or put me on a different kind of map, or both. He did try me on another map, which I absolutely hated because it made his voice sound like Darth Vader, and it was just awful. I told him I liked the other map better. However, ever since I left it seems like that this new map is louder but not as clear. It seems louder, but muffled, which is weird. I was going crazy for a couple of days after that mapping session trying to figure out if it was worse than before I went in. So that’s why I don’t know if it was a new map or not.

However, there is some good news: before he remapped me, he put me in the booth for some testing, and I did a lot better than I did two weeks before. I’m making progress! Dr. Wolfe came in during the middle of the testing along with Tami and he said that Tami made another comment about thinking my hearing aid must have been on because I was doing so well. LOL I offered to take it off if they wanted. At that point, I’d been wearing it as a “security blanket” even though it was turned off most of the time, and occasionally it was helpful to figure out what a sound was. However, that day I also got my old hearing back in and turned in the loaner, and it isn’t fixed like it was supposed to be. So, I’ve not even been able to turn it on, and ever since Thursday I’ve hardly even worn it.

The second audio therapy session went well, all things considered. It was especially tiring for me because I had JUST gotten remapped and was struggling to get used to the new map. The fact that it might be a different kind didn’t help. Things were louder but it just seemed harder to “navigate” with my brain, due to muffled-ish (yes, I KNOW that’s not a word!) sounds. We worked on some of the “Shh” words and other similiar words, and we did all these different excercises with words that consisted of testing me and etc. I can’t even remember what all we did now. I do remember that I couldn’t wait for it to be over, I was so tired already from trying so hard to listen with it. Right before we left, Tami wanted to try me out on the phone, so she went into another room and called the phone in that room, and I was to say whether or not she said “red” or “yelloW”. So we did that, and I got which ones she was saying. I didn’t really hear it very clearly, but I could hear the pattern of the words she was saying. At the end of the phone conversation, she said something else and I had no clue what it was, but my husband was telling me to hang up the phone so I did… Tami came back in the room and said “When you end a phone conversation, you are supposed to say “goodbye”". LOL! Oh well, I was overwhelmed and didn’t really think of it, so when my husband told me to hang up, I just did.

Other than that, things are starting to get a lot better with time, although at this very point in time I feel like I’ve hit a plateau, but I just need to pratice. I haven’t been doing that as much lately because I’ve been so busy. But I have discovered a new sound that I couldn’t hear with my hearinng aid, at least not very well: dog tags!!! Somewhere around the middle of last week I started noticing that I could hear the dog’s tags making noise when they ran by or went in and out of the room. I love that sound, even though it’s annoying. It’s cool to be able to hear it and know when the dogs are coming before I see them! At first it was pretty faint… now it’s pretty darn loud! I now know when one is following me without looking behind me.

Other sounds are starting to sound more natural and it is becoming easier to distinguish between them, such as clapping, clicking, scraping, barking, howling, shuffling, banging, fizzing, dinging, bonging, bubbling, water running, burping, etc. However, people’s voices all still sound like Donald or Daffy duck. They are starting to sound a little different from each other, but for the most part they are useless unless I am reading lips. I am a very long way from being able to hear what people are saying without either knowing the subject of the coversation or reading their lips. I don’t know if it will even be possible, but I hope so. My biggest dream is to catch every word, even on the phone. Perhaps it’s a possible dream…

As far as the dizziness and ringing, the dizziness has been a lot better lately, but the ringing has been worse. I discovered I could eat gluten again without hugging the toilet all night, so I’ve been eating stuff with gluten in it and that may be one reason the ringing has been so bad the past week or so. I am going to hold off on the gluten for a little while and see if the ringing gets better. The ringing actually isn’t bad when I don’t have the implant on, if it is even there. It’s when I first put the implant on in the morning, even at low volume, and when loud or drawn out sounds occur that trigger the ringing. The last week, all the tinnititus has been triggered by sounds from the implant. That’s actually an improvement from constant ringing from who knows what!

11:14 AM 4/8/2004 It has officially been one week since I was activated. Nothing major to really report on has happened, but it has been an adventurous and trying week! There have been lots of ups and downs. I have gone through periods of time where I absolutely hated the implant, and other times where I think it’s pretty cool that I can hear what I can out of that ear. I’ve laughed, cried, and screamed, and I bet I still have a long road of the same to travel…
It’s not as bad as it was at first, as far as not sounding very good. It’s improved a little bit; I can distinguish certain sounds and words a little easier. My brain has finally accepted that they are SOUNDS so it doesn’t seem as much like a horrible case of tinnititus anymore. My brain also getting more used to the volume; I am finding that I can slowly increase the volume and still be comfortable. That is good, because it seems the louder I can go, the better I can hear with it. unfortunately, “hear” is a relative term. Everyone still sounds the same, mostly flat, and I still only hear the drums or beat of music. I also still have to read people’s lips, if I am not reading their lips, all I hear is a series of beeps and clangs, with only slight variations. However, if I AM reading their lips, I can pick up a lot more and distinguish the sounds easier.

Some sounds are slowly becoming clearer and clearer. Some are sounds I love to hear, such as the birds chirping, knocking, footsteps on hard floors, and paper crinkling. I can even hear the shuffling of my jeans legs when I walk, which is pretty cool. I don’t recall hearing THAT with my hearing aid. However, there some sounds I can’t stand but can’t ignore! Some of these are my husband kissing in my microphone, clearing his throat (ARRGGHHHH!!!!! THIS one drives me INSAAANNEEE!!!!), and the rapid shooting of his video games. (Funny, they are all husband-related? Teeheehee!) I can hear a lot of other good and bad things also. Some things suprise me, and one would think I was tripping out on drugs to see me sitting or standing there, totally enamored with the source of the sound, doing it over and over! For example, one day I discovered how loud scratching the desk with my fingernail really was. So I sat there for several minutes just scratching the desk, with a big grin on my face! Hehehe! This has happened several other times with other seemingly minor or silly sounds. How to describe these sounds? Hmmm, compared to my hearing aid, they are VERY different. It sounds completely different yet slightly alike, they are definately more metallic sounding, blurred together, and not as clear. Often, I just hear a lot of clicking or whirring. This is just a matter of my brain training itself to sort it all out, however, not a fault of the implant.

I’ve discovered a couple of things I don’t like, but hopefully will be fixed somehow: It does not pick up some low pitches, and seems to completely miss out on some words that aren’t low pitched. I figured it out the other night during one of the reading sessions with my husband. It seems to skip over words that begin with high frequecy sounds, such as “SHH” or “Whh”. It picks up the first part, but either does not pick up the second part of the word, or barely does. Like the words “Should” and “Shall”. If my husband says “ould” and “all” by themselves, I can hear them fine. But if he says “Should” or “Shall”, It barely picks up the “ould” and “all” parts, if at all. I hear the SHHH parts ok though. That is getting annoying, because I get completely lost in the paragraph. We came across a phrase in a book that was nearly impossible for me to pick up: “wheat should be”. I plan on mentioning these problems to Tami today, during my “audio therapy” with her. Maybe she can help. Today will be the first “audio therapy” session.

8:13 PM 4/8/2004

The audio therapy went well. I almost forgot about the appointment due to a carpet shampooing disaster, and therefore did not have anytime to freshen up or do my makeup! Oh well. The audio therapy session basically consisted of a variety of excercises, mostly centered on seeing what I can hear, and me guessing at words that Tami was saying. It was difficult and tiring, but not so bad! She said I was doing really well. So that’s encouraging.

One part I rather enjoyed was when Tami gave my husband a little taste of my world. During one of the excercises, she would read off a list of words with her mouth covered, and I had to try to guess what she was saying and say the category they were in, such as fruit or states. She read off a list of weird volcano names to my husband, without telling him they were volcanoes, and he was to guess that they were volcanos. Well, obviously, he was completely lost!!! So now he knows what it’s like for me.

She told me to pratice listening by reading the closed captioning on the tv and trying to follow along, like I have been doing, and to get a book on tape and also the same book in print, and try to follow along. We also discussed the tinnititus and dizziness, which I was having a lot of trouble with. I told her about how it had been better lately, and my husband and I were suspecting that it may have been my hearing aid all this time that was making me sick! So I am to keep a log of the dizziness and ringing for Dr. Wolfe, the audiologist that does the mapping.

Speaking of mapping, I have had the processor on the loudest program and then up a notch or two on the volume all day. I am happy about that! I am now finding that the “noisy room” setting and the “normal” setting are way too quiet, so I am already looking forward to the mapping session next week so we can crank it up a bit!

About the problems with low pitches and missing some of the words, it may either be that my brain needs to adjust and learn to hear them, or the implant may just simply not be picking up on the sounds at the moment. I guess we will know in time.

That’s about all I have to say right now. I could say a lot more, but I would rather wait until I am sure about what I have to say before I write about it. Stay tuned!

So today is exactly 34 days since I’ve had the CI surgery, and I am now activated. But first, let me back up a few days and add in some updates, as this week has been so busy or overwhelming that I did not write on the actual days that some of the events happened.

Wednesday was my appointment with Dr. Baker. Nothing new, I told him about how I was still dizzy and my ears were still ringing. He gave me the same ol same ol “I’m sure that will be fixed when they turn the implant on.” He skirted around the issue of the dizziness, I think he just didn’t want to say nothing could be done. But I sort of got it out of him. He reccomended “Balance Therapy”. Great. More appointments. Anyway other than that, my stitches are finally bump free! I thought they were scabs, but he told me it was my skin growing over some stitches that hadn’t dissolved yet. So I asked him to pull them off and he did. And that was that.

Thursday was my initial activation day. My mom wanted to be there, so she met us at the Cochlear Implant clinic around 9:45. My appointment was at 10. We all met up there and went into the waiting room. The “Hearing Therapist”, Tami, came and talked to us a bit. She’s really nice and friendly, which is a good thing since I’ll be working with her an hour a week!

Finally, Dr. Wolfe came and got us and we all went back into this little room. It was small, and all of us were pretty squished in. He put my processor and stuff together, hooked it up to a machine, and put it on. I didn’t hear anything right away because he hadn’t turned it on yet. He went to his computer, told me to turn my hearing aid off, and then told me to tell him when the beeps got loud, but not too loud. Then he turned it on.

It was really weird, to hear something out of that ear after 12 years of not. I heard these really weird clicking and clanging noises, and at first it was really hard to tell if I was actually hearing anything or if it was just my tinnititus acting up again. But finally I could tell that I really was hearing something. It was really hard to tell him about the volume, because of my tinnititus and the fact that I hadn’t heard ANYTHING for so long, so I really just guessed the best I could about the volume. He had my mom and my husband talk along with him to see if I could hear them. I could. It was pretty cool, but weird… it sounded nothing like them, or any normal sound. All it sounded like was a bunch of electronic beeps or pots and pans banging together when they talked. No voices, just clangs representing their voices.

Dr. Wolfe and my husband seemed a little excited and my mom was definately excited, near tears. I was excited to, but not like that. I was more cautious, too afraid to be excited or happy about it, since nothing works out for me when I do that. That and listening to what I was hearing wasn’t really any fun. It was like a really twisted case of tinnitius, like weird clanging tinnititus that set off REAL tinnititus. When he had the volume all the way up on my comfort level, I could feel my eye on that side twitching, and my eyes would water whenever there was a lot of sound. My neck was also spasming a little bit. The eyball thing was uncomfortable but not too bad. But that tinnititus… almost immediately I started panicking a little bit because all this time I thought the tinnitus would go away as soon as they turned it on. But no, it was worse. But I tried to put up with it and ignore it. Dr. Wolfe said it was probably because my brain was reacting to the sounds, and that it should go away soon.

Then after those few moments, we sat there for a long time, about 2 hours, while he ran a whole bunch of other tests on the implant and my ears and whatnot, and we talked about the implant and asked him questions about it. During that time he replaced the magnet with a stronger magnet on my headpiece becuase it kept falling off. Also, during the testing, he said that my nerve response was REALLY good and said that things were looking really good, better than they thought it would. He seemed pretty please with the fact that everything was working out better than expected.

Finally, he was done, and he put my processor and everything together and put it on me, and there it was… finally. No more being hooked up to the machine and listening to tests.. it was just me and the implant as it was meant to be. (Sounds corny, I know, but I hate being hooked up to wires and I was anxious to get to the final stage already.)

I couldn’t really feel the headpiece that was stuck to my head. But the part on my ear was a little heavy and annoying, since I hadn’t worn anything on that ear in so many years. But I could hear sounds. I could hear laughing, clapping, and voices already. Of course, they all sounded the same, but I could tell by the pattern of the sounds what they were. That was a little disappointing, to only hear one sound but in a pattern.

Then, when Dr. Wolfe was telling me and my husband what to do at home to help me get used to it, one of the things was for my husband to read to me from a children’s book and then stop at certain points and I was to finish the sentence. Dr. Wolfe tried it on me, and without looking at him I was actually able to follow along with his voice from the pattern of sounds I was hearing, and finish where he left off. Dr. Wolfe seemed sorta impressed, I guess because he didn’t expect me to do that well with it already. My mom by this point, was crying. And my husband looked a little wide-eyed. Pretty cool, I guess… I think I was just so overwhelmed by it all that I was sorta numb. I probably looked to them like I didn’t give a hoot that it was working, but I did, I was just, too cautious to get too excited.

Anyway, I don’t know if this happens with everyone, but Dr. Wolfe seemed to be so impressed that he went and got Tami and Patti to come and see how well I was already doing with it. They seemed to be majorly impressed. By that point there was a total of 6 people in that room, boy was it CROWDED! So we all talked, I piped in that I caught this word or that word, Tami asked me if I promised I didn’t have my hearing aid on, hehe! That was funny, I don’t know if she was joking or not but if she wasn’t, that made me feel good that I was doing that well.

After all that, we talked to Dr. Wolfe about some final stuff and then left. After we left, and my mom was on her way home, my husband told me in the car that Dr. Wolfe said he thought I was going to do really well with it while I was in the bathroom, but he didn’t want to say that to me to raise my hopes too much. I guess we’ll see.

After that my husband and I went to Red Lobster to celebrate, had a nice dinner even though there was no money for it, lol. Then we came home. At first the afternoon was interesting and fun, because I would recognize certain sounds a little, and that was encouraging. I could hear the beat (but only the beat) of the music in the restaurant and in the car. I could hear the turn signal, the clacking of the keyboard keys on the computer, and the mouse wheel. Except for the mouse wheel, those were all sounds I could hear with my hearing aid, but not that well. At that point, still now, I could hear everything much better with my hearing aid. But it was just the fact that I was hearing anything with that ear. Of course it’s still clicking and clanging and mostly the same sound, but still.

Towards the end of the night, I was tired, cranky, overwhelmed, and highly irritated. At this point, all it was, was static noise, and I was too tired to focus enough to try to figure out sounds. I was mostly cranky and irritated because I kept wanting to turn the volume up, but I couldn’t because it was setting off the tinnititus and dizziness. But if I had it low enough to not do that, I couldn’t hear nearly as much. That got frustrating. Fortunately it was almost time to go to bed so I got to take it off, and I went ahead and took it off 2 hours early so we could watch a movie and I could have a break. That was nice. I sure was tired though! It wore me out beyond belief.

The next day, Friday, was the second mapping session. Much of the same went on except for when he put me in the booth and tested me out to see if I could hear any of the words. I could do some pattern recognition, but since it all sounds the same it was hard to tell which word it was. They re-mapped it again, this time at a more comfortable level that doesnt make my ears ring as bad. Tami told me to start out wearing it with the volume down and then gradually increase it to keep my brain from going into shock and keep the ringing from being so bad.

We left, and that was that. It is much better now, much more tolerable, and I am even starting to make out more and more words and sentences. I can’t hear very well compared to my hearing aid, but I still hear pretty well with it compared to NOTHING! It still sounds like just a lot of static and weird noise most of the time, but when I pay close attention, I am learning and training my brain to associate certain clangs with certain noises. Hopefully I’ll start hearing more than the same clang, at least…

I miss my hearing aid. I’ll get to wear it again once I learn to use the implant, but that will be a while.

IwashedmyhairIwashedmyhairIwashedmyhair…
I…. WASHED… MY… HAIR!!!!!!!!!!!!!!

Whooo hoooo! I’m so happy. It was almost like those Herbal Essences commercials. It felt sooo good, even if it hurt a little bit from pressing on my skull. It feels sooo much better now. I don’t have to be a greaseball anymore! I had to forego the dryer obviously due to pain.

The wounds are healing nicely I think. They still feel all hard and crusty to the touch but they don’t look as bad. I’m not picking the scabs, as much as I have the urge to. It just itches!

I let Molly sleep with me in the bed this morning. When I woke up, she was licking behind my ear. Little rascal! Of course I pulled her off me, but now I know why dogs lick their wounds: it feels good! Their tongues are perfect for scratching the itchiness but soothing the pain at the same time. I wanted to let her keep doing it (Maybe SHE could get the scabs off. ewww, right?) but I knew better. Good thing I was going to be able to get it wet today, to wash doggie spit germs off.

The ringing and being off balance are rather bad today, though. I just don’t feel very good. I am sure it has to do with water retention or something like that. I have a headache too that seems to throb and make it all worse. Not sure if it’s the activity of showering and the housework I’ve been doing, but I hope it goes away. It’s not as bad as right after surgery, but still annoying!

So far I am doing pretty good. The dizziness and ringing are constant, but not intolerable. They are just a little more severe than they normally were 24\7 before the surgery.

My main discomfort as of right now is the pain and itching on my head. That and not being able to wash my hair on my own!!! I HATE being a greaseball! YUCK! But I’ve been working with it by wearing a ‘dana on my head. Wearing a ‘dana is normal for me even pre-surgery so it’s all good. Anyone that knows me well knows that sometimes I look like I walked right off a hippie commune (and not just cuz of the ‘dana.) That’s me, and it works with me, so thank goodness for that! It is a little uncomfy pressin’ on the surgery site tho.

I drove for the first time since before the surgery today. My driving wasn’t too bad in my opinion, at least not any worse than normal. Hehehe! I stuck with Dr. Baker’s instruction to stay away from heavy traffic. Only drove down the street. It was nice to get out of the house! I’ve got serious cabin fever.

I’ve also done a pretty good job keeping the surgery site dry as per his directions, so I’m glad for that. I can not WAIT for Monday, the day I can WASH MY HAIR again!!!!!!!! The only problems have been keeping Molly’s nose out from behind my ear and especially her tongue off of it. She got a few licks and nose squishes in when I wasn’t paying attention though. Oops! Felt good tho, just to have SOMETHING on it!

I still have not slept on my left side yet. That is starting to get to me. I have tried, but it’s still just too painful. It does still hurt a lot. I hope the pain goes away a lot more by the time activation day rolls around, otherwise the outside part is going to be uncomfortable to wear.

Other than that, I’ve spent the last couple of days posting about my surgery on several online communities that I belong to, and as a result fielding lots of questions about it. That resulted in me writing a few things that I also wanted to include in this journal for memories or keepsakes. I’ve copied some of them in another entry.

That’s all for now.

I saw Dr. Baker today for a follow up visit. He says the site is healing pretty well and that all the pain should go away soon, and when I asked about the ringing and dizziness he said that since he thinks it’s mostly in my right ear (the one that got the implant), and that most of the ringing and dizziness will go away once it’s activated. Ok, I can see how maybe the ringing will go away since the auditory nerves will be busy, but the dizziness?? I am rather doubtful about that. I guess we will see.

My activation is scheduled for April 1st. Until then I have been instructed not to drive because of the dizziness. A side note: I did see Dr. Baker mention during my last visit before this one that sometimes a Cochlear Implant is actually used to cure Meniere’s Disease. Ehhhh…. ok….

Something I had intended to ask him about but forgot, and now it’s bugging me: WHICH implant exactly did he put in??? I know this seems silly but the fact that I wanted the one from Advanced Bionics was definate. What I didn’t think of was that A.B. currently has 2 different implants available, the newer one having JUST been approved. The newer one is the HiRes, and the older one is the CII. So now I am all paranoid that he might have put in the CII, like maybe I got implanted too soon and didn’t get the HiRes or something, I don’t know. I am just paranoid, but praying my butt off that it’s the HiRes.

According to the website there isn’t that much of a difference between the two, but dangit, I want the newest and best one! I guess I could email Tami, my “rehab” speech pathologist, and see if she can find out for me. That’s all I really know to do, whenever I call Dr. Baker’s secretary, she never calls back and so I don’t get an answer half the time. I understand she’s probably pretty busy but it’s still pretty annoying to not have any confidence in getting any help from her!

Well today’s entry is pretty much going to be both a personal entry and a CI journal entry, because all my personal life has been about since the surgery is the recovery. So, today is exactly one week since I had the surgery.

I had the surgery Monday, March 1st, and everything seemed to go fine at first,during the first hour after I woke up, but lots of complications arose during the course of the week, like a blister on my eardrum and nerves that were supposed to be numb but weren’t (so I felt and still feel ALL the pain), major constipation from the painkillers and dizziness and ringing so bad I wanted to die. Oh yeah, let’s not forget the intense neck pain from my head being twisted around AND a cold that left my throat so sore I couldn’t swallow the very day after surgery.

So I spent the last week basically bedridden and didn’t get out of it until Sunday, March 7th, except for when I had to go see Dr. Baker Tuesday and Friday to have the area checked and bandaged changed and then removed.. The whole week Nick had to help me do everything, even find the bathroom because I didn’t know left from right or up from down. Finally today I’m back on the computer because I can see the screen through the dizziness enough to be able to read it and type. That and I need to distract myself from going truly insane from the dizziness and ringing and pain. I can’t stand to be in bed anymore. I have to go on with life even if I’m miserable.

Nick and I are afraid of the possibility that the ringing and dizziness from the meniere’s disease being made even worse (and me, the pain) might be permanent as we feared before the surgery, but the doctor keeps saying it will go away and we are hanging on to that, because we have to. I hope this damned implant is going to be worth everything I am going through right now. There have been many times I broke down crying through out the week and regretted doing this. Nick has been wonderful with me through this, I don’t know what I would have done without him. He’s been an absolute angel and I love him so much, and I know he loves me.

I don’t know what I am going to do if this miserable hell ends up being permanent and/or the implant doesn’t work on top of it all, but I am trying not to think about that right now because all I can do is deal with what’s going on right now in the here and now. I have enough to deal with just making my way through the house without falling or getting hurt, not killing myself from the insanity that ensues when the ringing gets too loud, and doing anything I can to ignore the feeling of someone bashing my head in with a hammer. Painkillers and valium help a lot, but the side effects of those drugs are almost as undesirable as what they help. I’ve found that as long as I stay still and don’t move around too much, it all calms down and it’s not so bad. But the point is, I have to live life, I can not and will not spend the rest of my life in bed. I am going to live my life dammit, come hell or high water. Well, try anyway.

That said, on to the fun stuff. Humor and fun is what gets us through the hard times, right? Thought you guys might enjoy the picture of my head, taken 5 days after the surgery. (The bandage didn’t come off until then). Yummy, eh?

(Note: You can click on the picture and it will take you to another website that has a larger version of the pic on there.)

P.S. Even though it looks like they shaved a lot, you really can’t see anything when my hair is down. Thank goodness!! At least THAT went right for me! But… I can’t get it wet until Monday, March 15 (two weeks after surgery)… so washing my hair has been a BITCH. (Again, thank goodness for Nick.)

This is the first entry in my CI journal. CI stands for Cochlear Implant. In this journal I will be writing often about my journey with the Cochlear Implant.

Tonight is my last night implant free. Tomorrow I will be waking up around 4 am, to take a bath and get ready to go to the hospital. My husband is driving me. We will leave the house about 5:30 AM and are to arrive at the hospital at 6:15 AM. The surgery is scheduled for 8:15 AM, and I am to talk to Dr. Baker, the surgeon, before it starts. The surgery will last anywhere from 1 to 3 hours, and I could wake up either in the afternoon or evening. I may or may not have to stay overnight, it depends on how well I do after the surgery.

I am only a little nervous. I am a lot more nervous about the recovery than I am the actual surgery itself. I learned that usually the first 48 hours of recovery are the worst. There are a lot of things going through my head, mostly me wondering how things are going to be and envisioning how they may be. I just want it all over with.

I have cleaned the house, so that stress is gone. It is now ready for whatever visitors we may get, and it will be nice to have a clean house to recover in. So I’m happy about that.

My Mom and Grandma, and maybe my Grandpa, were all planning on being there when I wake up from the surgery tomorrow. But to be honest, I kind of don’t want them there. I really appreciate that they want to support me and be there, but I’d be a lot more comfortable without them there. I tried to get them to stay home before the last time I was scheduled for this surgery in December, but they wouldn’t hear of it. But I am getting ready to call them in a bit and try again.

Well, I called them and they weren’t the happiest about it, but they were agreeable. I just explained that I didn’t really want a bunch of people around staring at me when I’m trying to wake up from the anesthesia, and that there wasn’t really any point in them being there if it wasn’t just to visit me, because my husband would be the one to make any decisions and stuff. My grandma was really the one that resisted more than anything, my mom didn’t really seem to care that much one way or the other. At least that’s out of the way. I can wake up and start recovering in peace.

So, the plan as of right now is for me and my husband to go to the hospital and I’ll have the surgery, when I wake up, my husband will make all the phone calls. He’s planning on calling Jenna and Kelly C., as well as my family. Then my family can decide what they want to do then, depending on whether or not I will be staying in the hospital or going home.

I don’t really know what else to write about at this point. That’s all there really is to say about the night before the surgery. Everything else will be written about in time, I am sure, as my journey with my new bionic ear continues.