Monday, October 23, 2006

Mapping Session #2

I went to see Susan today and she reprogrammed my ear. I told her that I am doing much better hearing men's voices, although I can't hear some womens' voices at all. When she reprogrammed the processor, she made some changes that will help with that, I think, so maybe in the next few weeks I'll be able to "hear" womens' voices better. Of course, none of the sounds I hear are clear yet, except the tinkles....those original sounds are now clear as a bell :) She reiterated that I am doing really well and making great progress. The vibrations are starting to settle down a little bit on regular programming. If I turn up the sensitivity they are still overwhelming, but she is pleased with how well my brain is adjusting and is giving me a little more time this time to adjust to my new sounds. I won't go back until November 15th, so I won't have any more news on that front for a while.
I asked her for some advice about how to keep the processor on. It's a bit heavy and it just doesn't want to stay on. I find that if I hold my head just so it stays on but I don't want to go through the rest of my life holding my head just so, not being able to hug people, or jog, or bend over to pick up babies. I am looking into getting a Powerpack battery pack, which will reduce the size and weight of the processor. It will mean that I'll have to wear a wire, so to speak, but it won't cramp my style nearly as it's definitely worth looking into. In the meantime she found me a clip that I think will help hold it on. I knew I'd have to do something last night when I was holding my sweet foster baby at church and she grabbed my face to give me sugar and sent my processor flying into the floor behind my pew. I had to ask the sweet couple behind me to retrieve it for me. Yeah, gonna have to do something.
It wasn't a great day...I have had a lot going on, and the stress has just been building (a lot of schoolwork, a busy weekend, and the added stress that having ears "in stereo" brings). I was going to indulge in a little retail therapy before my mapping session, but managed to back into a light pole with a great deal of force while I was at Target (I'm so thankful there were no cars around!). I thought I was in first gear but I was in reverse (they look similar in the new Versa) and about the time I realized I was in reverse, I whirled around and about that time, hit the pole. Because of my position, I smacked myself solidly on the ear. The processor and the coil with the magnet went their seperate ways...the processor ended up on the front seat floorboard and I finally managed to locate the coil in the back seat. I was horrified that I might have done some serious damage to my ear and was relieved to find out, after assembling the processor again, that it still seemed to be working. After establishing that everything I had was still in proper working order, I got out and surveyed the damage to the car. Ugh :( It's not horrible, but it's my new car......wahhhhh :( I drove to Panera and got online (I always travel with laptop) and tried to relay my hubby and my mom. I finally reached my sister-in-law at work she called my hubby for me (I thought he should know what was going on in case they decided to do any kind of tests on the implant, since it would mean me getting home later). Susan looked it all over and said that everything was more than likely fine. She said that they're implanted in there really good and are made not to move. That was a big relief.
It did make me think ONCE AGAIN *sigh* about getting a Medical Alert bracelet. Since I have metal in my head, I can't have MRIs or be in the same room with an MRI machine. If I were ever in a car accident and lost the processor (*ahem*, like I did today) nobody would know that I had the implant. The problem is that I am not a fan of jewelry. I wear a wedding ring and occasionally will put on a pair of tiny earrings, but that's about it. I sure don't want to wear a dog ugly MedAlert bracelet, or even a necklace. Wonder if paramedics would look for ankle bracelets? I told my hubby half-jokingly that maybe I should have it tattooed on somewhere, but I have no idea if the paramedics would ever see it unless I had it tattooed on my forehead. What's a girl to do??
After I "talked" to Lisa, I went to Davis-Kidd Bookstore. I had a hard time focusing on the books, but did come to myself long enough to remember that there was a Christmas special edition of Paula Deen's magazine, so I went looking for it and treated myself. I considered further medicating myself with some Ben & Jerry's Bananas on the Rum (WHY won't they sell that stuff in the stores?!?!?), but decided that that would be overkill. Maybe next time :)
I didn't get a chance to walk/run today. I have been trying to go out at least every other day, but I haven't had a walk since Saturday. It really does make me feel great to walk for a few minutes. Maybe I need to clean the treadmill off (if I can even find it....)
I'll try to be better about posting just a little something here and there. When I get stressed, I don't like to spread it around, and I've been a little stressed lately. Surely I can find something positive to post here and there, though! I'll try to do better at keeping up :)!

Monday, October 16, 2006

My first mapping session...

went GREAT! :) I wasn't prepared for it to be so great, actually. When I first got there, Susan hooked me up to the computer, and off we went, playing the tones again. I couldn't believe they were the same ones we did last week (I asked her several times if they were the same ones, since they sounded so different!) Last week, all I "heard" was pounding vibrations inside my head. Only a couple of the tones sounded like anything, and they were very low and very robotic, like machinery. This week, none of them were "just" vibrations. They ALL had a sound, and some of them were downright purty :) Susan redid my "strategies" since I had them set too loud last week, and they were nearly intolerable. When she was done, I found a favorite and found to my delight that her voice, while still robotic, had a definite feminine tone to it. We set them at a comfortable sound level...what she asked me to do was to tell her when it was "balanced" with my right ear (basically, when it took over about half of my hearing, it seems like) then she set that for my middle (12 o'clock) level. I was happy to find out on the way home that I could listen to my CDs with it at that level (although they sounded terrible, it didn't hurt my head to listen to them like it did previously). I think what we needed was a chance to sit down and talk over what wasn't right and then try to fix it, and I'm happy with the results.
One major concern that I had was that I still have a lot of vibrations inside my head whenever I "hear" a sound. I've been really worried that I might perhaps be one of the few that just can't use a CI because of the vibrations. They have just really been uncomfortable. I talked to Susan about it and she said that she usually only saw that response in people that had been completely without hearing either all their lives or for many, many years. I asked her if it would get better, and she said that it nearly always went away with a little time. Now I can deal with it. I just needed to know that it would get better.
I am now convinced that I'm headed in the right direction. I have been seriously worried that things just weren't right, but after hearing those tones in my mapping session, I KNOW that my brain's gotten a lot accomplished this week! How incredible! That's all I needed to know...that my brain was working with this implant. Everything else will come in time. I got all the time in the world, now that I can see some results and know that I'm starting to do the "normal" thing (if there is such a thing in this business) and have the same chances as everyone else. I never would have thought it. God is good. I KNOW this.
You wanna know what else? I'm listening to Harry Potter on CD...and I'm not kidding sounds incredible. No, I can't understand the words. But I feel like I'm right there. I feel that if I could turn the sound up, or sharpen it just a bit, I'd be able to hear the whole story. I know part of it is due to today's mapping session, since it didn't sound so hot last week. It's distorted and robotic sounding, but oh, it's almost. How freaky is that? If I could just turn it up without the jackhammers hammering away at my head, perhaps...
I saw a quote on one of the boards that I visited that I liked. Someone asked for permission to steal it, and it was given, so I'm stealing it too. It was:

"I have seen the light at the end of the tunnel, and it's not a train."

In other news, since there IS life beyond cochlear implants, although that's about all I can think of these days:

I bought me a new pair of Nike running shoes today. I tried on six or seven pairs of running shoes and manhandled every pair on the shelf under a hundred dollars before I finally found a pair that fit me comfortably. I may kill myself trying, but I really want to start running. I think that it would be great exercise and it would beat down some of my stress (I just don't handle it really well). I really wanted to give them a road test but the weather was NOT cooperating today. It was about 60 degrees and rainy all day. Maybe tomorrow will be dry and I can try them out then :)
I am getting a break from school...for a couple of days :) I don't have any assignments due until Wednesday, since we're on Fall Break. I am amusing myself with a huge stack of magazines and mail-order catalogs that I'm way behind on, and I finally got a chance to read my new cookbook last night. She also uses a little language that I'm not big on (WHY in a COOKBOOK?) but the recipes look terrific, and some of her stories are side-splitting.
I'm gonna get off here and make a grocery list. When it gets cold, I really don't mind cooking, but since I haven't cooked much lately, the cupboards are looking pitiful. So I see a trip to Wally World in my future...tomorrow! :)
I hope everyone's week is off to a great start! :)

Friday, October 13, 2006

An update!

I've been slow in updating because I've had to think about this thing a bit :) My relationship with my new implant is coming along slowly. I didn't expect it to be love at first sound, but honestly thought that my brain would transition a little more smoothly than it has. I still can't turn the sensitivity up without the jackhammering taking over my head. That gets old really fast. And I have to admit that perhaps I had my sights set a bit high, as I was hoping to be able to distinguish more sounds at this point. HOWEVER...I have a CD that I can play, one that I know well, and can tell which song I am listening to, simply by the way it feels in my head. I consider that a good thing, since many CI users have trouble distinguishing where words begin and end. I shushed Claire this afternoon and could hear myself "shhhhh"ing. I asked her to do it back to me and I could hear her doing it. I went to Wal-Mart yesterday and stuck my hearing aid in my purse just to see what I could hear without it. I ran into a preacher friend that I felt comfortable talking to and was happy to find out that his voice had a tone to it. It was a flat, robotic tone, but I could "hear" it, so that was good. When I dumped a bag of dog food in the cart, I heard it crinkle, and when I threw a bag of Doritoes in, they crinkled too. So we know this: I can hear crinkles, tinks, and taps. Oh, and "shhhhhhh"s. Considering that one week ago I had not heard anything in that ear in over thirty years, it's nothing to sneeze at. I go for a mapping session on Monday, and Susan will reprogram the CI with new "strategies". I think I'm going to get her to turn the sensitivity down, too. I had her turn it up when I was activated because a. I thought I'd get used to it fast, and b. I didn't know how disruptive it would be to have all those vibrations in my head.
Also, it's taken some doing getting used to wearing the thing. Yesterday I knocked it off twice...once onto the tile floor at Walgreens...and was scared to death that I'd broken it. It came with a one-time replacement certificate, but I don't want to replace it the very first's gotta last me a while. My Daddy suggested that perhaps I should wear a hairnet. That man and his brilliant ideas! Since I've never worn anything on this ear (and it's on my left side, which is awkward, since I'm a righty), it takes me a while to get it on, and it makes my ear sore. It has rechargeable batteries, large and small. The large ones last longer but I can only wear the small ones, because the large ones make it too big and heavy and it's all prone to come sliding off faster. I know I can have an ear mold made to keep it on, but that's one of the things I hate about hearing aids, and I don't wanna. It's all going to take a LOT of getting used to. I firmly believe that in the long run I will be so glad I have this implant. However, to say that I'm in love with it would be purely fiction. However, Ive been told that that's the usual reaction to 'em. I don't think anyone falls in love with theirs the first week, except perhaps Ivan (who is about five weeks or so post-activation and doing awesomely!! He is enjoying music already!!). ;)
I'm doing lots of listening exercises....listening to music and to Harry Potter on CD whenever I'm not doing anything important, like schoolwork. The jackhammering effect makes it really hard to concentrate on anything, so I'm glad I have a few days off school for "Fall Break", so I can relax a bit and just take it easy and play with my new ear! :)
Your comments, e-mails, love, prayers, and mentions on your own blogs have meant so much! THANK YOU all! I'm sorry I've taken so long to update, but I like positive updates, and wanted to take a few days to sort out some of my less than positive feelings. I feel that I'm right on course, for ME. I'll get what I get when I get it, and, as my Dad said last night, I already have SO MUCH. I'm a blessed woman! :)

Tuesday, October 10, 2006

Today's emotions are:

Overjoyed. Overwhelmed. Overstimulated. Tired.
Yes, I can hear. GOD IS SO GOOD.
Mind you, it's not very impressive, but I don't particularly care.
When Susan first hooked me up, I didn't feel anything at first, and then it came....whop whop whop whop the pounding of a migraine headache without the headache. I didn't catch it at first. I was listening for REAL sound, ya know. Then it got more intense...WHOPWHOPWHOP. I told Susan, "I feel a pounding in my head. Is that what I'm supposed to be getting?" I don't really remember what she said, only that I felt reassured that it was OK, and at least somewhat normal. She ran through several electrode pairs that way, and they all felt like that....whop whop whop whop. My head was reeling!
Finally, we came to an electrode set that actually had a little bit of...dare I say it?..sound quality to it!! It sounded a bit like it felt...sort of like a mechanical hum. The one after it was similar...still the heavy pounding in the head, but it, too, had a tone to it. Most of the tones we ran through didn't have a lot of sound to them...they mostly just assaulted my poor brain with sonic booms, but there were several where I felt like I was really "hearing" some sort of sound, no matter how dreadful. I was just overjoyed to have heard something that had a bit of "color" to it...that was all I had dared to hope for for the first day!!
After some doing, we settled on three programs of various sonic booms for my first week's practice set. I was somewhat dismayed when I put my hearing aid back on my "good" ear to find that with my processor on, I can barely hear from my "good" ear anymore. Apparently, my brain is scrambling trying to make sense of the new assaults on it, and is in "one thing at a time" mode.
I had a quick audiogram done, and scored around the 30 decibel level with my vibrating head. Now, if we could just transform these vibrations into, I'd be hearing great!!
I experimented with my three programs on the way home, and was starting to feel slightly unsettled that I hadn't "heard" any more, but had faith that it would get better. I took the processor off at Don Pablo' was so loud in there that my head felt like it was about to explode, and I wanted to enjoy my lunch (Priorities, ya know) (a funny thing...whenever I took the processor off, or whenever it was totally quiet, which I've discovered is virtually never, I get a "dial tone" sound in my head. WEIRD!!). I made the mistake of putting it back on without first turning the "volume" down, and about dynamited my head apart from the vibrations! I tried to nap in the back seat on the way home, but just couldn't relax enough to do it (not to mention that the kids kept poking at me to see if I was still awake). We finally got home and I decided that I needed a nap. The vibrations are making me tired. I hopped in the bed (and NO, I haven't taken the nap yet...OF COURSE I had to blog first!!) and there were a couple of coat hangers down by the foot of the bed that were cramping my style, so I tossed them and they hit a package of lighbulbs on the bed.
"Tink", they said.
"Tink"?? Isn't that a sound?
Of course, I grabbed the coat hangers, and tinked everything I could find, and yes, everything tinks. And the tinks don't sound exactly alike. Along that line, I started drumming my fingernails on the keyboard of my laptop, and those tink too :) I'm tempted to get me several glasses of water and a spoon and have me a tink festival. My sister-in-law brought my girls home from school and when I was talking to her I realized that my voice has a sound to it. Hers doesn't....yet. The laptop keys click.
I am ecstatic with today's discoveries. I feel like I have gotten exactly what I prayed for....just enough sound that I have hope. My short term goals are: to hopefully be able to manage the vibrations in my brain, and to be able to hear with my hearing aid in my good ear and listen to tinks with my new ear at the same time :) I have another mapping in a week, and who knows what will happen in a week??!?!?
Today has been a great one. The adventure is off to a grand start!!!!!!!! THANK YOU for your prayers!!! do you think it went?

What a dreadful picture...but wow, the joy and amazement I was feeling!!!!!!!!! Posted by Picasa

Monday, October 9, 2006

I am...

nervous. Excited. Stressed.
In less than 24 hours, if all goes well, I will hear sounds again in an ear that hasn't heard sounds in thirty-one years. As I've said before, I'm not expecting anything great, but sounds, in this ear that has been dead for years, are monumental...nearly miraculous.
I got my copy of Michael Chorost's Rebuilt in the mail on Saturday. I picked it up and have gotten through the first several chapters. He uses language that I don't use, and that is one of the only things that keeps me from recommending it without reservation. However, on almost every page, especially in the first few chapters, I see myself. He used one illustration that I have to share with you. On page 48, he talks about scheduling events for the days after his activation, and he says: "Entering those events feels strange, like knowing I'm going to show up female instead of male, or Catholic instead of Jewish."
The surgery wasn't scary. It was just surgery. It didn't, on its own, have the power to change my life. I didn't enter into it with any fear or trepidation. I walked into the hospital joyfully and confidently. However, big. I think the reason it's so scary is that it is so unknown. If I could remember hearing in this ear, ever before, I don't think it would be such a big deal. If I had experienced any of this before, it wouldn't be so nerve-wracking. However, I am stepping out now into uncharted waters, and I'm petrified.
I have the strength of several wonderful implant users and parents of users that I've met over the past six months behind me. I have the support of family and friends. I have church family all over the United States praying for me. And I have God, the giver of every good and perfect gift, with me, and this gives me strength and courage.
Keep me in your prayers in the morning, folks. I'm off to birth an ear. My life will never be quite the same will always, from this point on, be measured by "before" and "after" this day.