Saturday, September 27, 2008

Two out of three ain't bad :)

I got one video done Thursday night, and one done today. I would have gotten more done but I have had computer issues....grrrrrrrr. I have a brand new laptop that has been coughing and spitting and crashing all day today...ugh. I will try to get the third one up in the next few days...but I am not promising anything :)
For now...enjoy the first two! :)


Friday, September 26, 2008

YouTube videos are up!...

...here!

I have the first one captioned, and am working on the other two. I will try to get them posted here tomorrow night :).
I had my second map today. We set my first program at Hi-Res P, Fidelity 120...my second program was just a louder version of the first. Then I asked Susan to set my third program at Hi-Res S in hopes that a simpler program with less stimulation would be easier to adapt to, and when she started setting the levels on it I was surprised at how much better it was. We got to looking and it turns out that entirely by accident, we had set the programming at 50/50...which means that half of the sound was coming in through my T-mic and half of it was coming through the external mic on the implant itself. That has turned out to be MUCH easier to listen to, and we were actually able to increase my overall volume using that. Katie was in the bedroom tonight talking to her cousin Bethany on the phone and, just using the new ear, I was able to make out a few words here and there. I am thrilled! Not bad at all for 48 hours out! :)
The hardest part has been adjusting to the whole bilateral business. I had gotten used to the way my good ear sounded, and combining the two is taking a bit of doing. Factoring in that the two ears sound different, that it's been thirty years since my brain has worked two ears at the same time, and that one of my ears doesn't work exactly like the other one does, it has occasionally been overwhelming. Today I actually had some balance issues after my mapping...if I took one ear off, or turned my good ear down, I would get unbalanced...it was the strangest feeling! I had heard of people having balance issues with cochlear implants, but since I've never had them before, it had never occurred to me that I would. After being reassured that it was normal, I quit stressing over it and am just muddling my way through. I did take a long nap this afternoon...without ears...and woke up feeling a lot better. I had forgotten how discombobulated I felt the first few days with my good ear...I am feeling it with this one, too...and this time we're trying to work two at once. I may take a lot of naps in the next few days!
As far as the sensations I feel (and yes, DJ, I hear sounds with them, they're not just feelings) here's the odd thing: I only feel them when I wear the new ear alone. When I'm wearing it with the good ear, I don't feel them. This is SO totally different from the first time around when I couldn't wear the two ears together at all. I don't have another map for about another week and a half...so I will have time to adjust to what I have now. I am doing lots of listening therapy...I just love the Direct Connect cables. I plug right into the laptop and can listen to books on CD or music with no outside interference...it's so nice!
Will try to get those captioned videos up soon...watch this space! :)

Wednesday, September 24, 2008

Surrounded by sound!

Sorry it's taken me so long to get this post up. We went to lunch after activation and when I got home I started working on the video. That has been largely unsuccessful so far...the model of Handycam that we borrowed isn't compatible with Windows Vista (I am stating for the record that I hate Vista, argh) so I had to go kick the old laptop into shape, install the Handycam drivers on it, and upload video. The first time I did it it saved it into a movie the size of a postage stamp, which wasn't exactly what I had in mind, so now I am doing it again, and it is taking ALL. NIGHT. LONG. to do.
Then we all got ready for dinner, went out to dinner at our local Mexican restaurant and then went to church. Back home now, waiting on the video to upload, still. I will have to get it off that computer and over here on this one where I can edit it a bit in Windows Movie Maker and upload it to YouTube. Did I mention already that I hate Windows Vista? I can't even make my laptop file share or printer share. For crying out loud!
We got to Vanderbilt right on time this morning, and Susan was fairly busy so we ended up not getting back there until around 9:45. I had been furnished with a new processor, new coil, and new batteries, so that was a real treat...the only problem that we had was that AB had sent two processors, and in return they wanted me to send back the original left ear processor AND my beloved right ear processor, which I wasn't giving up, no way, no how. It was a mixup of some sort, obviously, so Susan got on the phone with them and sorted all that out, and then we got to work.
It was actually a little confusing when she started the tones...because I actually heard them before I felt them. I wasn't really sure if I was feeling anything until they started getting louder, and then I could feel the sensation. I wasn't too surprised at it...I had expected to feel something. It was nothing at all like the first activation when I only felt sensation and heard nothing. We went through the rest of the tones and I felt something with every one of them...again, not surprising. I was delighted that they had a nice sound quality to them though!
Then came the actual turn-on...I braced myself for the shock but it wasn't as bad as I was afraid it would be. I definitely felt the sound but Susan's voice was also coming through really well. We discussed it for a few seconds and then she said, "let me try something". I am not sure what she did...but with a few clicks she managed to eliminate nearly all of the sensation I had at that particular volume (several sounds had NO sensation at all...I tested them out by banging stuff on the desk in my own little personal science project, which was highly entertaining, apparently ;)). Then I told her to raise the volume, and the sensation came back, so she clicked again, and most of it dropped out again.
This is a HUGE contrast to the way it was before...before we took the first implant out, AB actually sent a rep to do integrity testing and he and Susan slaved over that ear for the better part of an hour, trying this program strategy and that, and never managed to make so much as a dent in the sensation. I have long accepted that for me to have been deaf as long as I have, a little sensation might be there at first that might take some getting used to...but what I had before was completely overwhelming. It got to the point that I chose to spend the vast majority of my time in total quiet rather than to wear the processor. This isn't that way...as of today I have some "normal" sounds that don't have an accompanying sensation. Granted, I have a very quiet program...my audiogram today looked to be in around the 70 dB level...but I am delighted to have real sounds! My own voice has no sensation at all, which hasn't ever happened before. It looks like I'll be starting small and working my way up, but I am THRILLED to be where I am now...this is a great starting place.
I actually wasn't able to wear the two ears together before...because they were so different. I couldn't handle the sensation on one side and sound on the other, so I gave up the sensation in favor of sound. I've worn the two together all day long today, and besides a slight headache, I have had no problems. Everything seems much LOUDER today...and everything just sounds different. The sounds I have coming in on the right and left sides don't match up very well and it is SO hard to get used to! I know in a few days the brain will blend the two together a little better and I won't even notice the differences...but right now I can :). I am sitting now hooked up to the laptop with two ears hooked up to two direct connect cables on the laptop (it has two headphone jacks...bonus!). I'm listening to John Denver singing "Looking For Space" on YouTube and marveling at how it sounds EXACTLY like I remember it (granted, I'm hearing most of it through one ear!) and trying to refrain from singing out loud (my people are all asleep and would not appreciate my efforts!). I am jumping in with both feet...I know that this time things are going to be different and I am going to do everything I can to make it work this time. I am determined...I am going to be bilateral...I want to be surrounded by sound!
OK...now that I have the video on the computer...YouTube is down...ugh! I'll get it up ASAP...promise :)
More posting soon!

Eight hours......

...yeah, yeah, I know I should be asleep...but I'm hyper. Eight more hours and we'll know...one way or another. It's anyone's guess what I'll hear...pray for me!
I'll update as soon as I'm able...and we will video the whole thing, so stay tuned...perhaps this time I'll be able to figure out how to upload video a little faster than I did last time! :)
Eight hours...after almost two years of wondering and waiting, the clock's ticking down. I hope I'll be able to sleep at all tonight...

Saturday, September 20, 2008

Quick update....

(you know me well enough to know this will be another epic, right?)
Five more days until activation...*whew*. I'm quite frankly a basket case about it...this could go either way. We will tape it, and I'll probably post it no matter what the results are, although how fast I do it depends on how quickly I remember how to upload it from the camera :).
Interesting side note...I was briefly concerned as to whether or not we might have issues getting to activation! A rumor started yesterday that Nashville would run out of gas this weekend...and people were lined up six and seven deep at pumps last night...in some areas cars were parked on the road in line. I think that most of the stations here in town are either low or out of all but the premium stuff, and more isn't expected for another couple of days. We tried to get a little last night for our monster van and the BP down the street was rationing it...eight gallons to a customer! It is just insane! Our little car is full and we very rarely drive the van much during the week...so we are good to go...no worries here!
Our second ASL class on Tuesday was just as much fun as the first...this time everyone got a little more relaxed and we got to know each other a bit better. We actually stood around and talked a bit afterwards and just had fun hanging out. This coming Tuesday we're supposed to go up to the League in downtown Nashville for a project set up by the Deaf community called, "Deaf, Deaf World". Talking is strictly prohibited...sign only! You know how hard that will be for me!?!? Very limited sign vocabulary and a biiiiiiiiiiiiiiiig mouth...perhaps I should tape my lips together?
OK...a couple of items of interest: First up: Got a funny story about your hearing loss/deaf/CI adventures? Val Blakely and Rachel Chaikhof are teaming up and putting together a book...proceeds to go charity. Go here to read more! Believe it or not, I can't think of a single funny story, although I know there have to be millions of them. Maybe my hubby, kids, or mom can help me remember! Deadline is Sept. 30th...so hurry!

And this from Brenda Battat, director of HLAA:

"In our Labor Day mailing to you about how frustrating air travel can be, it looks like we hit a hot button! Many of you wrote back complaining about lack of access. People told us stories about missing announcements at gates, missing their plane, or missing on board announcements that would have saved them from missing their connections. Some people are so frustrated they are ready to sue.

Well, we hear you! We are working with the US Department of Transportation (DOT) who tell us they are not receiving enough complaints. They think people with hearing loss are doing just fine with the airlines. Let’s send them a message and let’s make it loud and clear so they can hear us!"

There was a form attached to the e-mail to register your complaints with the DOT, but I couldn't figure out how to attach it to Blogger, so here is the next best thing: the official DOT form. I have only flown alone a handful of times, and haven't yet had any trouble. Thanks to a tip from Laurie, when I fly alone I go to the counter and ask for a pre-boarding pass for people with disablities. That way I am guaranteed that I can get a seat where I can see the flight attendant and hear what she's saying. I do tell the attendants that I'm deaf in the event that something urgent comes up, but I haven't ever had a problem.
HLAA has a webpage that deals with airlines and advocacy, but it seems to be down, so when they get it back up and running I'll post it :)
My Claire has a birthday today...eight years old...and we are taking her out for her birthday tonight. She is in love with my iPod Shuffle so I got her her own little mp3 player...pink! We asked her where she wanted to go and she picked Red Lobster. Expensive tastes that little girl has! :)
Gonna get off here and get ready...have a great weekend, all! :)

Tuesday, September 9, 2008

ASL Classes...Part 1!

I took SEE (Signed Exact English) waaaaay back in 197something when I was a little bitty thing. There wasn't a lot of need for me to use it, as I could hear well enough with my hearing aid to get by in a mainstream school environment (if I remember right, I didn't even get a teacher's aide until second grade). Signing is one of those "use-it-or-lose-it" things...very easy to get rusty...and it is an ever-evolving language as well. Years of neglect has made me way past rusty...I had forgotten all but the most basic signs. I've had an interest for a couple of years now in re-learning and have even picked up a couple of books on the subject. I have learned quite a few signs from Deaf and hard-of-hearing friends and it has just made me interested in learning more. I couldn't take the ASL 1 class last year because of a scheduling conflict, so I was thrilled when it fell on a Tuesday night this year...I am totally free on those nights :).
Tonight was the first class, and I am going to love this. There's the teacher, nine women, and one boy that looks to be around 20ish or so (definitely outnumbered). Two mothers with CI kids, one grandmother of a CI child (although she doesn't look old enough to be a grandmother!) and quite a few teachers' aides for a local school make up the bulk of the class. There are a handful that are there just because they want to learn the language, but most of us have a connection to someone who is deaf and/or hard of hearing and are working on communication skills. I am the only deaf member of the class...so that will be kinda interesting :).
We talked about the history of ASL...the different kinds of sign (SEE, cued speech, Pidgin Sign, etc), syntax, customs, body language, etc. We learned quite a few signs, but mostly we just covered it from an informative point of view tonight. We have a good group...everyone loosened up fast and we all had a good time...and I am looking forward to the next nine classes!
I really think we have a good teacher...Jackie started learning ASL in 1992, I believe she said, and has a college degree in it. She works for a video relay operator as an interpreter, so she has had a lot of experience and is just a gold mine of information. She will occasionally take a sign from the book (a newer edition is coming out this month, I believe) and say, "that's not how they sign it now...here's the short form" or something to that effect, and I like that. I know it will take me a long, long time to get either fluent or really comfortable with it...but I feel like she wants to help us get a really good grasp on it so our communication skills will be the best they can be.
This class ended up being my birthday present to me this year...I turned 37 today. It was a great way to spend the night. It is in a small town outside of Nashville that has nothing but a Sonic, but y'all know me...Sonic is all I need, really :).
The new ear is still healing great...I sleep on it all night, every night, stitches and all, and no pain. The incision occasionally gets kinda sore and the skin over the implant gets tender occasionally...since he moved it up it's taking a bit of getting used to again, but that won't last long :).
Off to bed...night, all! :)

Saturday, September 6, 2008

A first!

This morning I woke up late...entirely too much so, honestly. It's dark and cloudy outside and the weather was just right for sleeping. Usually, that's a bad thing...my morning headache is always worse than usual when I sleep like that. However, this morning I woke up with NO HEADACHE AT ALL...and I was sleeping on my new ear when I opened my eyes!!
The past few nights I've tried sleeping on the new ear but I think that fear more than anything kept me from it. Last night I was laying on my "good" side and was NOT sleeping well...when suddenly I realized that I had just flipped over and was sleeping on the new ear. I panicked a bit at first...and had to think about it for a second...was I in pain? how did it feel? and then realized that it felt fine...no worries...back to sleep!
So it's healing well on the outside, which is a great thing in and of itself. However, the really big thing here is that I wasn't able to sleep on that ear before surgery without pain and headaches! This is huge! I have already told several people that as far as I'm concerned, this surgery is a huge success, because when I touch my ear, it feels like a perfectly normal ear...for the first time in two years. No pain, no pressure, no anything. I was actually really lucky this time in that I had very little swelling (the magnet from my good CI sticks to the magnet site already), no numbness, no facial nerve stuff, no taste disturbances. The newness will wear off in a few days, I'm sure, but I keep touching that ear, expecting, I think, that something will happen and it will be like it was before, but no...this time around, it's different. That was the main reason I went through it all again. The discomfort the first time around drove me absolutely up the wall, and at one point I just wanted it OUT...I didn't care if they replaced it or not...I would have been happy if they had just taken it out. I had a hard time asking for help though, because I thought that most of it was just me. Ever heard the old story of the Princess and the Pea?
Well, I'm one of those people that are sensitive to almost everything, I'm not sure I could feel a pea under twenty mattresses...maybe a couple, though ;). Things bother me that the next person's not even going to notice. I thought that I was just going to have to deal with it until I had my second ear done and they were SO different that I knew the first one could be improved on. And the improvement is amazing...there is no comparison between the way it was before and the way it is now.
I am STILL refusing to get my hopes up that activation will be different than it was before. A couple of people have told me to "think positive" and "be optimistic" but I prefer to be realistic. I didn't have hearing in that ear for years. We know for sure that there was no hearing from the time I was four years old and onward, and the loss might have started even before then. The brain just wires itself differently sometimes over long periods of time. If I do get hearing this time around instead of sensation, believe me, I will be the happiest person on the planet, but I am not setting myself up for that. Instead, I've decided that this time I'm going to try my hardest to push through it. I have a new inspiration...a 14-year old girl named Amanda. Amanda had never had any hearing at all when she was implanted at age 14. When she was first activated, she only had twitching in her eye...no sound at all. That would have been enough to make me throw in the towel the very first day...ugh, I could not have stood that at all...but she managed to stick with that and she is now hearing some sounds with no sensations. Granted, my brain's a lot older than hers is, but she has inspired me to try harder to work with unfavorable circumstances. My attitude is a bit different this time around...my primary motivation was to get the pain out of my head, and that has been accomplished...I am THRILLED with that!!! Anything beyond that will just be icing on the cake!
I will need to really set a plan of action and stick with it...as I've mentioned before, I have a very low tolerance for uncomfortable things...but I want to make this work if there's any way I can do it.
I LOVE my new ear! At one week post-op...I can say that I'm SO GLAD I did it again! It has already been worth it! :)

Tuesday, September 2, 2008

Brain dead!

...that's how I feel :). These pills that I'm on have slowed my brain down to a crawl. The past few days I haven't done much besides sleep, play on the computer, and read...anything requiring serious concentration has been out! I took the pills faithfully for a few days...the first day I fell asleep and let the medication run out and was sorry when I woke up in a lot of pain. I resolved then to just take them as prescribed and not feel bad about it. The first few days were really rough...somehow or another, my "good" CI ear got banged or scratched or SOMETHING during the process, and it was too sore to sleep on, so I didn't have a "good side"...I ended up trying to sleep flat on my back every night those first few nights, and that was tough. Last night was the first night that the "good" CI side was comfortable enough for me to sleep on it...and I crashed hard...slept for about 11 hours straight! I am not feeling the need for a nap today :)!
Taking the turban off was WONDERFUL...it took the pressure off and everything felt SO much better! I didn't take a good look at the incision until about 24 hours later, though, when I washed the hair for the first time...it looks identical to the way it did the first time around. He apparently didn't even bother preserving hair this time...he shaved himself a nice little landing strip on my head. I whined a bit to several of my CI buddies but am getting no sympathy from any of them, as they all think I got off entirely too lightly with my last surgery, when Dr. Haynes didn't shave anything at all!
The incision itself isn't too painful...the bony area around it and my neck are bruised and battered a bit, though, and that's where all the soreness comes in. When I took the turban off at 24 hours post-op, the swelling started...at 48 hours the side of my face was just huge and it stayed like that for probably a couple of days. Yesterday it was better, and today the swelling's gone. I still have some bruising behind the ear and the stitches are still visible, but other than that everything looks relatively normal. The site of the implant itself is incredibly itchy, for some reason. I have had a lot of issues with itching...painkillers seem to do that to me as a matter of routine...but most of it has settled down except for that area that houses the implant. I am assuming that it's because of the skin stretching and everything healing in there, but it makes me nuts. Abbie suggested that I get an ice pack for it, and that helped a lot...as long as it's cold, it doesn't itch. Dr. Haynes left a couple of stitches out this time where I could obsess over them...I think he is testing my patience. So far I have been able to keep my hands off them...I'm afraid of messing something up. We'll see how long that lasts! With my first CI surgery there were stitches all up and down that ear and I finally had to cut my fingernails so I'd leave them alone...they were just too much temptation.
Family and friends have been bringing dinner and hubby has been making sure I have everything I need, so it's been nice to just be able to relax. I'll probably get out for church tomorrow night...that will be the first time I've gotten out all week. I have been lucky not to have any really bad vertigo this time...I just get a bit unsteady when I first get up, but after that I'm good to go :). I still get tired very easily, but a lot of that has been due to not sleeping well...and the pain pills...once I get off those and get into a more regular sleeping pattern I think I'll feel a lot better!
Activation is Sept. 24th at 9 AM...three weeks from tomorrow! I have mixed emotions about it...but I'm mostly looking forward to it...it will be interesting and informative, for sure :).
OK...enough drugged drivel...thank you all for all your support and well-wishes over the past few days! Your comments have meant so much and have cheered me up tremendously! I love you all! ((hugs))