HERE ARE SOME MORE ODDS 'N' ENDS
I went to the Jax Symphony on Jan. 12. That was before I returned to church (in my previous note). The first thing I noticed, was when the orchestra tuned up for fifteen minutes before the performance, that it was VERY annoying. I guess I shouldn't complain because many don't have any hearing at all post-op, but I want this journal to be a true reflection of my feelings. I said to Tom, "Do they always do this for such a long time? It's really bothering me," and of course, he said they did. It's something that I never noticed before because we'd either be talking or reading the playbill. The first selection was written by a modern, local composer and I didn't like it very well, perhaps because I didn't know it. The next two were written by long-dead composers and were somewhat familiar to me. They were HUGE compositions in sound and number of instruments. I enjoyed those two very much. I was a little tired though. It was just my sixth day after surgery, but afterward I felt energetic enough to walk with Tom along the Riverwalk along side the St. John's River. We usually do that to wait for the crush of cars trying to get out of the parking garage.
Another experience over the weekend. I was eating lunch, chewing and talking to Tom (not a nice habit, chewing while talking), but all of a sudden, and just for an instant, my voice grew very large. Now even though I know that usually the last vestiges of any hearing disappear after CI surgery. I still secretly tried my hearing aid in my implanted ear. It wouldn't fit at that time because my ear was swollen. Later in the day I thought I'd try my aid again. I put a little lubricant on it and it slid right in. I turned it on, and while it didn't amplify as much as it usually had, there was definitely sound because all of a sudden my hearing became more balanced. I was really surprised and wore it for a little while. However, after a few hours it started to irritate behind my ear, so I took it off. I tried it again for another few hours on another day and again it didn't make my ear happy. Since then I've not worn the aid in my implanted ear, but I thought it was an interesting concept.
I'm feeling well, walking my 10,000 steps a day in short increments, remembering not to overdo. I guess we all know our own bodies the best so I do use my common sense.
I find people are still confused about the CI. More than one person at church asked me if I could hear now. I explained how it worked and they were all interested. If nothing else, I'm educating a lot of people.
GETTING NEAR THE END (THE BEGINNING?)
On Jan. 23, I had my follow-up visit with Dr. Antonelli. The stitches are absorbing into my skin, and all looks well. My first two days of activation and mapping are on Thursday and Friday, February 9 and 10. I will be getting two processors, both BTE and both beige (my hair is that color). Am I boring? I could get a BWP but I know I will NEVER wear it so will use the second BTE as a backup. Then I have appointments after that for the next five Mondays or Tuesdays. Following my activation, I will begin my journal again.
February 9, 2006
Okay, every one, here I am, back from Judy's Amazing Adventure. No matter how much I was prepared, there was no end to my astonishment at the other voices, my voice and my laughter. I did not have any emotional moments, just a deep, deep interest in what was going on. Perhaps this is because I have some hearing in my unimplanted ear, and did have a very little bit in my left, implanted ear. There was the series of beeps and bangs and whistles. At first I did not understand what I should be understanding. Eventually as the processor was turned up, the voice of the Lori, the audi, was coming through, not normally, but monotone, almost robotic. I understood her better than my husband. At one point, I laughed and sounded like Dorothy's Wicked Witch of the West. That made me laugh even more, and before you know it, the four of us (including Lori's assistant), were having a good time!
Lori wanted me to not wear my hearing aid unless I had something important to discuss with Tom, my husband, or when I went to church, out shopping or other places where I had to deal with people. When we left the clinic, my processor was on Program 1. She wanted me to increase it after a couple of hours to P-2, then later in the evening to P-3. Upon rising tomorrow, I am to make sure it's set at P-2, not P-3. Then increase it later in the morning. I go back to the clinic tomorrow at 11 a.m.
Leaving the building, I turned off my aid and just listened. The wind was blowing strongly, and I knew there was a sound, but it was not like any I've heard before. The traffic noise was not unbearable but not recognizable. On the way home I heard the ubiquitous turn signal and laughingly told my husband that I would never again turn on the signal and forget to turn it off. It was much too INSISTENT! After awhile the tire-on-the-road noise disappeared as did regular traffic sounds. At that point, I turned the processor up to P-2. I sniffed. It seemed pretty loud. I said, "I just sniffed. Did you hear that?" Tom said, "Always." Oh, my. Maybe I'm a noisy person and just never realized it.
I have to say that because of all you, my friends, I knew to expect the unexpected. It was always low expectations and high hopes. I can understand Tom somewhat, but have to read his lips. I know the television is on in the next room, but I cannot understand what is being said. That in itself is a miracle, though. I never before could determine that it was on with both hearing aids OUT of my ears. I hear Tom's voice and television voices as men's voices--deep and manly(!) I just don't understand what they are saying. Along with the voices, there is a constant, I want to say echo, of these voices, but clearer and montone. It's almost like I'm listening to two people, saying the same thing, but one is a split second behind. Other noises are surprisingly strong and identifiable, Tom scraping his fork on his plate during dinner, the clock ticking behind me as I sit here typing.
I did go into my computer file folder marked "hearing" and pulled out the little audio books someone had steered me towards. It was a child's book, called the "Brementown Musicians." As the man's voice narrated, I read along. Again, it sounded like two men talking, one just a tiny step behind. But I will continue that listening project. Lori wants us to practice numbers, days of the week, months, family members' names, etc.
For a little while there's been some sort of constant buzzing in the processor, but it just now stopped and other things have become clearer, such as my typing. It is sort of a relief not to have the contant sound. Maybe something in the house went off, such as the heat, or maybe my auditory nerve said "enough!" As I said, I expect the unexpected.
Good night and good luck.
Feb. 13, 2006
My audi said to go without my hearing aid as much as possible, to only wear it when I go out to shopping or to church or when I have to have a really important conversation with my husband. Otherwise, she said, wear your processor only. So I am doing that about 6-7 hours a day. Hour by hour, especially when I don't wear the aid, the CI is picking up more and more sounds that I understand. Talking to my husband, though, requires that I look at him directly at this point.
One thing I noticed yesterday in church. I was sitting behind the priests at Mass where I couldn't read their lips during announcements and sermon . I kept testing with CI only, with aid only and then both together. I couldn't understand with each of them separately, but together I was pleasantly surprised to understand many words.
I can't say that I won't change my mind, but the five-and-half-weeks with no hearing in the implanted ear gave me a taste of what it is like to have unbalanced hearing. I felt it most keenly when we were at the symphony or in church with all the music. Time will tell. Even though there's a ton of "noise" coming through my CI, I already prefer to wear it all the time, sometimes with the aid, but most times without.
I will go back tomorrow for another mapping. It is a new audi, Dr. Katherine Gray. She is the person I met originally and who tested me, but she was not available last week. I had Lori White, who was so great and so young. (Aren't they all? LOL.) After that I am scheduled weekly for six weeks. According to my instructions I will have weekly appointments for 2-3 months, then three-, six-, nine- and twelve-month appointments. I assume I will be able to call for an appointment anytime if I have a problem.
Here's a minor CI moment: (GUYS: Intimate behavior warning. Proceed with caution.) There is so much sound coming into the processor all the time, so when I went into my walk-in closet, I noticed the relative quiet. I was in the process of dressing, donning my bra. As I inserted each hook in to each loop, I heard a little "click." I was so astounded to hear three clicks, that I undid the hooks and refastened them so I could listen again. Silly.
Environmental sounds are coming in a fairly plain manner, unlike the human voice on which I'm still working. Yesterday, I was outside on my patio when I heard a dog bark from afar. It didn't sound like a bark to me, but I was able to determine from the pattern what it was. Water running from the faucet sounds like whistling and the whistling teakettle sounds only a little different than usual. Hubby Tom was chewing asparagus (he likes his vegetables al dente), when I thought, "Boy, is he loud!" I could hear his crunching. This morning I was standing at the sliding glass doors looking out at the birds, when I heard this clicking, clicking. I followed the sound to its source. It was Tom, two rooms away, clicking on his mouse playing Solitaire. That is totally amazing for an ear that had only 5% hearing pre-CI. I have not put on my hearing aid yet today.
I've been practicing listening to iTunes on my computer, all the songs from the fifties that I had downloaded, like the Platters, Doris Day and all the Four-somethings--Four Aces, Four Freshmen, Four Lads, etc. Some are good, some are not. I don't listen to fifties music much anymore but they are branded indelibly in my brain, so they make good lesson objects. I've also been reading and listening to children's books.
PS I forgot to say that I've had some of the WORST tinnitus I've ever had in my life. At bedtime after taking off the processor, it sounds like a train horn. The first night it happened, I looked at Tom to see if he'd wake up because I didn't know it was tinnitus. Sometimes I have it mildly and constantly even with the processor on. Sometimes it starts even if I THINK or READ about it. My tinnitus has always been crickets or ringing and often when I've been sick, or taken aspirin, or for no reason at all. But it has never played a big part of my life so this is new to me.
Feb. 19, 2006
I know that having half my tongue "tasteless" is temporary, but I wonder if it's for a longer period for some than for others. Some things I can't enjoy as I used to, for instance: a BMT Subway sandwich with lots of mixed veggies, oil & vinegar; or chicken fried steak, which normally I'd kill for; or a Wendy's Classic Hamburger. I noticed that many of these things that have mixed food items are not enjoyable at all. Scrambled eggs, or bacon, or plain sliced chicken sandwich is delicious. I can only chew on the right (unimplanted) side of my mouth to get the proper taste. Anway, it's been helping me lose weight.
About the tinnitus. It's still almost constant but sometimes I just forget about it . . . or maybe it disappears. In the morning all I have to do is put the processor near my ear and the tinnitus starts up again. Really weird.
As I said, I wear my processor without my hearing aid for much of the day to "practice" getting those sounds. More and more I recognize the sounds for what they are. Running water still has a whining sound. Our grass is kind of "winter-dead" at present, and today I heard it crunching under my feet. Tonight we went to see Madama Butterfly, the opera which makes me weepy. I wore both the processor and the aid and while the sound was not good via the processor it was as glorious as ever with the aid. I am thankful for that since we go to a lot of musical events. However, I will continue to use the processor to listen to music because I am determined to make it work.
Feb. 27, 2006
I spent this last week pretty miserable since sound was much too loud for me. Granted, my sister was visiting and we went to LOUD places==the symphony, a performance of Hello Dolly at a dinner theater, restaurants, etc. Finally, I took it off altogether for two days. It was that or my sanity.
Last Tuesday, Feb. 21, I thought it was too loud when I left, but also thought I'd get used to it. That didn't happen. This morning we got the present problems resolved. I took a more conservative approach to my testing and asked to have one program softer than my optimal program. What a difference a day makes and thank goodness for frequent mappings. I can understand speech much better and hear environmental sounds more clearly. I'm also not being such a harpy. Right now I'm listening to the clothes washer add water and drain water from two rooms away. Oh, happy day!
March 3, 2006
This week has been really good. Some environmental sounds are starting to sound the way I remember them. I continue to wear the processor only, many hours day, only inserting my hearing aid as well when I go out. This morning I started to leave the house to go to the supermarket and forgot that I didn't have my hearing aid in my unimplanted ear. Now whenever I go out the front door, I stick my finger in my ear to make sure the aid is in.
One thing I must emphasize. On January 6, I had 5% hearing in my left ear, deaf for all practical purposes. Now I will go outside and hear the birds singing, the dogs barking, people talking, dry grass crunching under my feet, leaves rustling, and airplanes droning overhead from this very SAME ear. It makes you feel that this is Something more than a miracle.
We went last night to hear Emanuel Ax play the piano with the Jax Symphony. Not only is he well-known in the classical music world but he's POLISH! I was delighted to hear someone from my ancestral country. While listening to music, I always am experimenting. The music is still very "in outer space" sounding, echo-y and drawn out and downright weird. It's hard to explain, but at the same time I can hear the regular music. I turned off first the CI and then the hearing aid. Without the CI on, the music is quite fuzzy. Now I can't remember if that's the way I always heard it, or if the CI is now picking up the sound of each individual instrument! At any rate, I get the best musical impressions with both hearing aid and CI on.
Another observation: the other day I was walking and for the first time was able to use my CD player using my music link with my hearing aid. (Of course, I also bought a carrier for it that I strapped around my waist.) As I was walking, the traffic was too loud in my implanted ear, so I turned the button to "auto-sensitivity." What a difference. I was as happy as a lark, listening to beautiful music and enjoying the warm sunshine.
I know I have a long way to go, especially with speech, but as every day gets better and better in small ways, I think success will be mine down the road.
March 7, 2006
Yesterday, I went for my sixth mapping. On the way Tom and I stopped at McDonald's. (My taste is coming back.) It was very noisy, so I decided to try my P3 (autosensitivity) once more, only having had luck with it on my walk. I had just pushed the button for P3 when the cashier asked if she could help me. I ordered, then waited. All of a sudden I noticed MUCH of the background noise was muted. It was HEAVENLY! When I went to the table I took off the processor to see which program that was. It was P3. I tried all the programs again, and was disappointed that P3 did not have the same effect as it did at the counter. I thought, "Oh, no. That program was a fluke. It's not working after all. " I sat for a moment or two feeling dejected and while I was contemplating what to do, the sounds slowly disappeared again. In other words, I had never waited long enough to let the programs take effect. Somehow I missed that information (as is common for HOH people) or forgot it in the storm of information that I had received. All this time I had been pushing buttons rapidly. A new lesson learned! We continued on the highway to Gainesville, with me joyfully using the P3 program. The road noises were muted! I could hear MOST of the words Tom spoke as long as I looked at the side of his face. It was delightful. I made him talk and talk (and he is the quiet type). For the first time, I SINCERELY believe I have made one of the best decisions of my life.
Below is a very recent photo of me with my GREATEST supporter and friend, Tom. Cursor way down to see the photo and go next page.
