Friday, September 21, 2007

This and that....

Claire had a good birthday yesterday! I was going to take some sort of birthday goodies to her school, but she told me that her granny had already made cupcakes, so that was taken care of. She came home wearing a birthday crown with her name on it...apparently she got to wear it in school and got to be queen for the day :) My mom showed up with a bag full of goodies and the little girls invited her to come eat dinner with us, so she did. We went to Chili's...Claire's pick...which was fine, because we had gift cards for there, and it was free :) The little girls all ordered macaroni and cheese, which is terribly overpriced...we ended up paying 12.00 for three plates of macaroni. I told 'em that for twelve bucks I could make enough macaroni at home to eat for a month...especially since it's the cheap Easy mac kind!! They did eat it all, though...so that was a good thing....and then the server bought out some sort of huge chocolate volcano dessert for the birthday girl! I like Chili's...but last night, I realized just how DARK and LOUD ours is. We sat towards the back and if we had been with someone besides family I wouldn't have understood a thing. It won't keep me from going back, though...their food's good :)
We went to Wal-Mart afterwards to pick up some groceries and to let the birthday girl shop for a little while. She (predictably) wanted more Barbie stuff, which will probably be lost in the 2.8 metric tons of Barbie stuff that we already have by tomorrow :)
Yesterday's mail was fun...I got a birth announcement for a beautiful baby girl, my medical ID ankle bracelet that I ordered from Lauren's Hope on MONDAY, and a birthday card from my local ENT's office. I have been putting off buying any sort of medical ID for...oh....a year now? It keeps coming up on the lists that I'm on, though...and I have known that I needed to order something for a while. Since I have a magnet implanted in my head, I can't have MRIs. I'm not sure exactly what the consequences of that would be, but I try not to think about it. In case of an emergency, especially if I were to be rendered unconscious, medical personnel need to know that information. I am not a jewelry person. Occasionally for a special occasion I'll put on earrings and some sort of necklace, but we're talking really special occasions here. I don't like watches or bracelets or rings...I don't like feeling them...they just drive me crazy. So I have put off this medical ID thing as long as possible. I finally decided to give ankle bracelets a shot...to see if they would irritate me as much as other jewelry does. So far, it hasn't been a huge problem. I don't feel it often...occasionally, my jeans will brush up on it but on the whole, it's not too bad. Hopefully in a few days I won't notice it at all *crosses fingers*. Advanced Bionics does have cards we can carry that tell what medical procedures we can and can't have, but I always worry that I won't have them on me or that they won't be found.
Last fall I backed into a pole at Target and even at a slow speed, my head jerked back and my processor flew off. I had to get out of the car and look for the thing....it was in the back seat somewhere. If I was ever in a major motor vehicle accident, it's entirely plausible that I could lose one or both processors...and without those visible indicators of my deafness, who would know? It's a whole new ballgame :)
The birthday card from my ENT's office included a coupon for a free package of size 675 hearing aid batteries. I used those things for years...and now I don't need them anymore. I love the rechargeable batteries that come with my CI...they last me about 12 hours at a time, which, honestly, is about as long as I use them in a day. On Sundays, since we have such long days, I'll go ahead and switch batteries before the evening services in case the one I have runs down while we're out, but that's the only time. The Advanced Bionics processors come with two sets of batteries...two smaller Slimcells and two larger Powercell batteries. The Powercells are supposed to last a really long time, but I can't wear them...they are too big and heavy for my ears....so I have no idea how long they would last me :). I am hoping when I have my second CI that I can switch the two bigger batteries for smaller ones before they're even opened...I haven't asked yet, though...we'll see :)
Today: no plans....tomorrow: not many plans, so far...my grandma's turning 96 (I thought it was 97...I can't keep up) so we are going over to the nursing home to see her and have a little cake and ice cream. Bless her heart...her memory's gone, so she doesn't recognize me anymore, but she is a friendly gal and enjoys company no matter who it is.
I went back in the archives and looked at her pictures from last year, and when I read the accompanying post I realized that her birthday last year was the first day that I drove after my CI surgery...and that was two weeks later. And by my own accounts, I could barely drive a straight line on the less than half mile to the nursing home. Well, that does it. I'm waiting until after my Savannah trip to have that surgery. Even if they do get me in on standby in the next few days, there's a chance I won't be able to drive in time for my trip...and I can't let that happen!! So...I'll wait! It will give me something to look forward to when I get back! :)
Enough rambling....Katie is cooking bacon and eggs upstairs, and it smells done :) Later, y'all! :)

Thursday, September 20, 2007

Update:

Well, honestly, there hasn't been much news lately. My surgery seems to be on schedule...while I am grateful that it is scheduled and seemingly on time, I was really hoping that I might get called in on a cancellation...and that hasn't happened yet. Since I'm taking a trip to Savannah, GA, in a few weeks, I don't want to have it after October 1st...I will have to be recovered enough to be able to drive myself there!! So I'm gradually relaxing a bit, resigning myself to the wait!
I went to the Nashville HLAA Picnic a couple of weeks ago...pictures here! This was one of the first events hubby and the kids had gone to with me in a while. There were several other kids there so my girls had a great time...and since Will and hubby were some of the only hearing males there, they stuck together...although they did meet quite a few of my buddies, and I think they had a pretty good time, too. There is another big picnic on October 7th...the Nashville League for the Deaf is celebrating its 80th anniversary...so they are combining the CI Group, picnic, the HLAA meeting, and the League's anniversary homecoming all into one big event. I am really looking forward to that! :) Then the Nashville HLAA group will meet on the 13th...from there I will be taking off to Savannah! :)
I have been reading and posting over at the Hearing Journey forums lately....and in the past few days we have had quite a few new CI activations. They are all doing so incredibly well with their implants....I can't wait until I have my second one! I think this will be an entirely different experience from my first CI...I think this time I'll be able to hear at activation instead of just "feeling"...and am looking forward to seeing how this implant compares with my first one! I have been pushing myself with my first CI a bit...trying to crank up the volume just past comfortable, to see if I can't get myself used to it. It's tolerable until someone yells or drops something...and I have to keep it quiet in noisy situations so I won't get headaches. I was in Bible class Sunday morning and the guy behind me made a comment...I didn't get it all, but I did get the first few words that he said without looking...which was a big deal!
I took an online "webinar" taught by Tina Childress last week. Tina talked about different ways to enhance our understanding of music, and suggested a few websites where we could practice our listening skills. Some kinds of music are better for learning than others, obviously...hard rock, for example, is just noise....very uncomfortable to listen to, lyrics practically undecipherable. I like country and softer rock, and more recently, jazz (which is GREAT for practicing picking out musical instruments!). I try to listen to it at a high volume (wake the ol' brain up) and try to pick out as many sounds as possible. It gets exhausting quickly, but I can tell a slight difference in the way music sounds after just a week! :) I have also started listening to my Harry Potter CDs again (I keep the volume manageable for that so I can listen to it longer). They are still largely unclear, but hopefully in a few weeks, with more practice, I'll be able to pick out more and more words. I know that a lot of my failure to progress is physical, but I'm sure that some of it can be helped with some hard work...and I haven't been really putting in my best effort!
Gonna get going...it's Claire's 7th birthday today, and we're headed out for dinner in a bit...I have to clean up a bit, help with homework, and get the little girls ready to go out! Later! :)

Tuesday, September 11, 2007

One year ago today....

I woke up bright and early and hubby and I drove to Vanderbilt. I was tired and hungry (no food! no coffee!! oy!) but really excited. I knew that the surgery that I was about to have would change my life, and I was ready. Thankfully, everyone was on time that morning, and I didn't have any unnecessary waiting...I was checked in and whisked back to pre-op.
In pre-op they confiscated my hearing aid and then proceeded to talk to me and ask lots and lots of questions, which was both funny and annoying. Hubby was able to stay long enough to help me understand some of it, but they soon asked him to leave and I was at the mercy of two male nurses that I couldn't understand at all. They gave up on me pretty quickly and found a woman for me to talk to, and I could lip-read her MUCH better!! We got through the questioning, FINALLY, and they gave me a surgical cap and marked the ear to be operated on. I was astonished when an intern came in and said that they would be operating on my RIGHT ear, because that wasn't what we had been planning, so we had a bit of momentary confusion while she checked and re-checked, and finally verified that yes, we were doing the LEFT ear. *whew* Then Dr. Haynes came in just as the funny anesthesiology dude was about to put something in my IV. He looked at the fellow and said, "Don't do that! I want to talk to her a minute!" and then basically asked how I was doing, and if I was ready to go....just checking to make sure everything was OK...awwwwww :) After that little interchange he gave the go-ahead for the anesthesiologist. About one minute later they started wheeling me down the hall. I remember feeling fuzzy, half sitting up and turning to one of the nurses, and saying, "Wow! This stuff works fast!"...my very last memory.
The whole surgery was over in an hour or so...don't ask me...I don't remember it. I do remember waking up to a nice nurse beside the bed. She asked me if I wanted to get up and go to the bathroom and I told her I did. So she got me up, got me to the bathroom, and I immediately threw up. Lovely. She asked me if I wanted a Pepsi, and I did. Drank the whole thing and threw it up. At that point she asked if I wanted something for nausea, and I did. Don't remember anything after that, because it knocked me flat. I do remember waking up and her asking if I wanted to go home. I said, sure, whatever. Then I threw up again, and conked out. Woke up probably an hour later and hubby was sitting there. He told me that I could go home if I wanted to (I vaguely remembered already hearing that piece of news) and I told him, sure thing, get me up and out of here. Then I threw up again, and they gave me something for it, and I conked out...again.
Yet another hour later, I woke up, and this time hubby was ready...he had a wheelchair there for me to be shoveled into and carted out to the car. And yes, I was sick again...several times. He dropped me off at the house (the kids weren't there) and went to pick up my prescriptions. He came back bearing medicine and chocolate. The medicine, I wanted...the chocolate, no (it took several days before I was really up to eating again). I spent the next few days mostly sleeping (THANKFULLY, the nausea stopped after the first day). I didn't have a lot of pain...it was uncomfortable, but not horribly painful....I did take the pain pills, but more to help me sleep soundly then to stop pain. The top half of my ear felt like it was asleep, and it stayed that way for several weeks. I had a strong metallic taste in my mouth for several weeks, as well...strange! I had no tinnitus in the implanted ear...mainly because there weren't any hearing nerves left to kill off, I think...all gone years ago. I was HORRIBLY dizzy, though, and had to literally hold on to the walls to walk...forget about walking up and down stairs or driving. The worst of it was over in a couple of weeks, but I still had a good bit of it at activation, a month later.
A year later, I feel great. I can feel the implant under the skin...it's wild...but it doesn't bother me...I think that, aside from the first couple of weeks after surgery, I have slept on it every single night. It's a part of me now.
I am SO glad I did this. If you had asked me several months ago, I wouldn't have been able to give you the same answer, but after suddenly losing everything in my good ear this past March, it has been my lifesaver. It has given me sound that I never thought I would have in an ear that was never supposed to hear. It's far from perfect hearing but what I do have helps me so much. Most CI users report that they continue to see improvement over time...for several years....and I have that to look forward to...plus, new doors will be opened for me in November when I start the entire saga all over again!!
Happy first anniversary to my bionic ear today!! :) Any questions? I would LOVE to answer them!
Love y'all....... :)

Friday, September 7, 2007

So....what do they LOOK like?

I still run into people all the time that are new to the world of CIs and wanting more information. One of the most common questions is, "What do they look like?" Good news: especially if you've ever worn a hearing aid, they are pretty similar. Yes...they have the additional coil and the magnet, but especially if you're a gal, most of the time they're going to be covered up by hair :) I got asked the question today, and thought I'd just blog it so that everyone else can see too :)
Most of the time you can't tell I have it on. The only part that really shows on me is the T-Mic. If you don't want any part of it to show, you can always use a smaller ear hook, but I LOVE my T-mic...in addition to it providing clearer sound, it helps hold the processor on...so I don't have a problem with it at all :)
Here are a few pictures of my processor. I like jazzy colors so I picked out the "Techno" color set when I ordered my CI. My audiologist was amused....I'm not sure any of her other clients had done that before :) It was harder than it looked like to get pictures behind the ear, so sorry they're not any better. Any questions? Fire away :) (if you want to see the pictures full size you can click on them :) )





Wednesday, September 5, 2007

Like to read?

I started reading Josh Swiller's blog, Cochbla, about a year ago, when I was researching my first CI. I liked his writing immediately...it was entertaining and easy to read. Several weeks ago I found out that he had written a book. He served in the Peace Corps in Africa in the 90's and the book tells of his experiences as a deaf person in a foreign country. I love to travel, but the prospect of foreign travel has always been kinda daunting to me...the language barrier is hard enough to overcome in the US sometimes!! Anyhow, Swiller's book, The Unheard: A Memoir of Deafness and Africa came out yesterday, and is available on Amazon.com. I think it will be a great read and can't wait to get my copy!! :) Check it out! I'll try to get a review of it up here in a few days! :)

Tuesday, September 4, 2007

Frustrating....

You ever just get frustrated that people just don't seem to GET IT?
I never wanted to be deaf, and spent most of my life basically pretending I wasn't. In hindsight, maybe that wasn't the best idea, because now that I'm REALLY deaf, seems like I'm always having to remind folks. I used the "bluff method" for years...I could hear enough that with lip-reading, I usually had a pretty good idea what was being said, and what I didn't, I could usually bluff my way out of. And with the hearing aids, I had enough comprehension that I could occasionally pick up words here and there without always having to work so hard to understand. I have heard over and over again that people just forget I'm deaf because I manage so well. I understand that that's a huge compliment, but sometimes I wish I could make them all remember just a little better.
I hear sounds, yes. I do pretty well with environmental sounds; not so well with voices. I can usually tell what a sound is just by listening. Today I was in the bathroom with the door shut and I heard a noise. "Hubby's getting his clothes out of the closet", I thought. I know that sound, and I hear it well...even though the closet is several feet away. I hear the sound of the toilet running....of the clock beside my bed ticking. Honestly, some of these sounds I've never heard before, so I'm really impressed.
But voices are still my Waterloo. I can hear them, but I can't comprehend what people are saying. I am still almost completely dependent on lip-reading. If you blindfold me and give me a lineup of several people that I know well, I can listen to them talk, and can tell you who's speaking, but don't ask me what they're saying. I'm not there yet.
Seems like people would understand that when they're told...but no. I love my family, but I can't make them understand how uncomfortable it makes me to sit outside in the dark, with dim overhead lights casting shadows on everyone's faces, to talk. I would so rather be inside, where there are bright lights and fewer environmental sounds. But I know they enjoy being outside, and I don't want to be the lone holdout, the party pooper. So I go and I struggle, and come away not feeling MORE a part of the circle, but less, somehow.
And my hubby, bless him, abandoned me to go to the bathroom at a drive-around window at McDonald's on the way home from vacation. It was BEFORE we ordered. At that point I told him to HOLD IT and gave him the order and told him to get it while he was inside, because no way in the world was I going to order it myself. I can't order at a drive-through any more than I can fly to the moon!! I know that it just didn't occur to him. He wasn't being ugly...he just didn't realize.
When I'm driving, I used to be able to mostly just listen, occasionally turning to lip-read here and there. Now, I have to lip-read everything, which basically means that when I'm driving, either hold your thoughts, or wait until I am in a position to be able to look at you when you speak. And please don't look like you're annoyed at being made to wait when I finally do get to look at you; it's not something I can help. Like I said, I worked for years to make my deafness a non-issue...unfortunately, at this point in my life, it's a big issue, so I'm having to retrain everyone around me to think a little differently, and it's not only frustrating to me, but, I think, frustrating to them, as well (which, of course, adds to my frustration again, ha!) Sometimes when I'm with other people, especially family members, I just go without my processor: when they know that I'm completely deaf, and there's no sound at all coming in, they are a little more careful, a little more thoughtful. But put the processor on, and I'm suddenly a hearing person again, and treated like one. It's a catch-22...not really WANTING to be treated differently, or specially, but really needing it.
I am hoping that a second implant will fill in some of the gaps that I've got now. I'm not asking for miracles...but would be so happy to just have things be a little better. I believe it will happen...I just get so tired and frustrated sometimes. Just keepin' it real.
There are implant users that do incredibly well straight out of activation. My online friend Amy had her CI surgery in July, was activated with her Harmony in August, and talked on the phone to her husband ten days later (followed up that performance by calling her mother and her sister!). Those stories aren't what you'd call COMMON...but they're not uncommon, either...they happen. While I don't dare hope for such stellar results, at least in the beginning, I DO dare to hope that a second ear will give me better sound quality, better direction, less frustration.
All new CI users are told to keep their hopes high and their expectations low. I can do that...especially after the past year, since I know firsthand now that it's not an overnight process. But two ears will HAVE to be better than one!! I can't wait!! :)
Sorry for the vent...but perhaps several of you have felt this way before?
<3