Wow, hard to believe it will be 2009 in two hours. 2008 was such an interesting year, wonder that this new one will bring? After all, this time last year I was wearing a hearing aid in my right ear designed for mild to moderate hearing loss and hearing things just fine. One year later, I have a Cochlear Implant and am learning to hear all over again. Things have been going great. Getting adjusted to the extended earhook and having fewer headaches/pain which is great. Hearing more and more without the aid of speech reading and people at work have noticed a change in me. I am happier, more talkative and friendlier. Such a small device that delivers a big impact on my life. I am still wearing the hearing aid in the right ear, though it does little good. But, stimulating the auditory nerves in that ear through what little residual hearing I have left is important. Even if it is ten years down the road, there is still a chance I will be able to go bilateral.
I have been listening to my Zune in the car on the way to work. Choosing my favorite songs from when I could hear normally. They still sound like crap, but I am starting to be able to understand the words as they are being sung. In time, they will start to sound better, so I will keep on tuning in.
Happy New Year All....

What a great day! Both my girls came home for Christmas and we had a wonderful time. The oldest was by herself, but Angela was with her boyfriend, TJ, and my granddaughter. The majority of the presents under the tree were for my granddaughter, Gabi, who is almost 16 months old. We had so much fun watching her tear the wrappings off each gift.
It wasn't easy to understand everyone, but it was better than Thanksgiving. Sounds are still computerized but the helium sound seems to be going away, slowly. Between Kimberly, the oldest, and I, we had plenty of food and we were all stuffed by the time we got up from the table. I am so lucky to have two beautiful daughters and grateful that my granddaughter has a loving, generous and caring Daddy.
I even got brave and called my parents using my VCO. It was a good call, but not easy as my mother is hard of hearing and also gets confused easily. She came on the phone long enough to tell me she loved me and then handed the phone back to my Dad. I had to wonder if the relay operator had been drinking as some of what was typed didn't make sense (ie: a string of numbers instead of words). I miss them so much, but they live so far away and it is not easy to get away from work and travel up to the cold North of Minnesota.

These last four days have gone by so quickly and I have to return to work tomorrow. I am not looking forward to it, but have no real choice. I am adjusting quite well to the CI. No sounds make me jump, at least, and if I hear something, I have been able to figure out what it was. This still sound synthesized, but I can actually understand some voices without having to speech read or look at CC on TV. I can hear the buzzer on the stove, the microwave, my dishwasher. I heard the washing machine make a racket and knew it was unbalanced. Something I have not been able to do for a long time. The only thing I really hate so far is the pain my ear feels from the processor. That little hook just hurts after wearing it for hours.

Well, what an interesting day! Activation is complete and I have been assimilated. Yeah, right....
Bob and I drove down to Wilmington, not a big chore for me as I napped most of the way. We picked up my oldest daughter and after a really nice lunch headed to my ENT's office. He checked my incision, and looked in my ear and tried to tell be about a "gap" he had discovered somewhere in my ear but didn't fix at the time of the implant as the surgery took such a long time. He is going to monitor it and if needed, reinforce the "gap" using cartilage from my ear lobe. Not sure what that is all about as I had a really hard time speech reading him.
Bob and my daughter, Kimberly, got it, but it was one of those days that I didn't really have time to ask or understand. After passing the surgeons examination I was sent down the hall to see the CI audi and get my implant activated. I have to admit I was really happy when she started things and I could actually hear the beeps. We spent well over an hour just setting the processor to give me sound and not too much volume. No real mapping, that will come in two weeks.
The world sounds strange now, synthesized is the best word I can come up with. Voices all sound like computers inhaling helium and although I do have an easier time speech reading, I have to admit I am upset that I can't understand better. I know that will come in time, as I have not been deaf that long. It is just frustrating.
I did have one bright, shining, moment tonight while watching TV. I have my CC on all the time but it doesn't always show commercials. I was watching one and even without CC, and no face, just the voice, I was able to understand every word! I know it was just one voice, spoken at just the right tone and enunciation, but it gives me hope that I will get to the point that I won't have to speech read or use CC.
Hard to believe that Christmas is next week. I do have all my shopping done, which amazes me under the circumstances, and the presents are all wrapped. Just no tree yet, silly me has procrastinated as usual. That will go up this weekend. Both my girls will be home for Christmas, as well as my granddaughter. I am looking forward to it and just hope I can hear and understand them all.

It's Sunday night and all is quiet, more or less, since the tinnitus doesn't know how to be quiet. Getting a bit nervous, as well as excited, about activation day. It is in four days and I just hope it goes well. I know there is a 1% chance the implant can fail, so that is always at the back of my mind. Prepare for the worst, but hope for the best. That is my motto in life, and always has been.
I wish I had more than three days after activation to adjust before going back to work, but that is all I could manage to take just before Christmas. Being in retail, it's hard to take off time around any holiday.
Bob and I got to babysit our granddaughter, Gabrielle, today and we had such fun. She is 15 months old and so smart already. I love watching her, as you can almost see her mind working to figure out a problem or find a way to do something. She is already saying "diaper" when it needs to be changed and can figure out how to open the screen door, or put the lid on a jar correctly. She is also a very happy child and loves to talk to my cats. Her vocabulary is increasing and I just hope I will be able to hear it all as she grows. She doesn't mind me being deaf, as she has never really known any different. She is just a joy, pure and simple.
I do have an observation, one gained by my journey into deafness. Hearing people have more tolerance and understanding of deaf people than they do the hard of hearing. I suppose that is due to misinformation. It seems that once you mention the word deaf, hearing people just get it. Mention hard of hearing, and they lose the translation. I know that being hard of hearing takes on many forms, and that is the problem. In my case, I can clearly hear environmental sounds like a siren, horn honking, paper tearing, but can't understand speech, even though I hear it. Hearing people get so frustrated by that, and I can't help it. It just is what it is.

It's been a quiet week, no pun intended, but not without it's frustrations. Having my non-implanted ear lose hearing has been annoying, to say the least. Knowing that my activation date is less than two weeks away has given me some hope, but it is hard. Work is no longer fun, and being at home gives me some peace, until Bob tries to talk to me. It is just so hard, but I am not going to let it get me down. That is not my nature. Just having one of what I call my "pity parties" and I will be better in the morning.

Green Light

I went to the surgeon today and all is well. He agreed that the fluid retention was caused by my sleeping on that side and since I have stopped, the body has started to reabsorb that fluid. Most of it has gone and what is left is under the actual implant, so all is well for activation in two weeks. I feel so much better now and am looking forward to a new experience.

The fluid buildup has not gone down so I faxed my surgeon to let him know what was going on. (I find that sometimes a fax works better than iprelay or my phone/vco relay. It cuts out the "middle man" and goes right to the source). I explained that the implant site has fluid buildup and has increased rather than reabsorbing back into the body. He faxed me right back and asked me to come into the office so he can check it out. I am so worried that my activation date will be postponed. So, I have an appointment on Thursday so he can check it out and let me know what is going on.

Black Friday

Although I love working at Wal-Mart most days, Black Friday is a day I dread. I don't know what comes over people on that one day a year. Our store was like a zoo, and I was glad that I was working behind the scenes in the back offices. Had I been out on the floor, I am not sure how I would have fared. Not being the best of speech readers, I would have spent most of my day saying "excuse me?" or "I don't understand, I am deaf". I was totally upset tonight when I read an article about an associate in New York that was killed after opening the doors at 5 am to 2,000 shoppers. It appears he may have been trampled to death. What made it worse is that when the store decided to close due to his death, the shoppers ignored that and kept on shopping. I am sorry, but there is nothing worth that on any day. Such a waste.
My head is hurting today. The fluid near my implant has not started to go away, in fact, there seems to be a larger area. I think it is because I am sleeping on it during the night.There is no redness, and the incision is almost totally healed, but I am going to call my surgeon next week just to play it safe. I don't want anything to delay activation.

Well, Thanksgiving went better than I expected. The restaurant was a nightmare, but I knew that to start with. The distortion in my non implanted ear is so bad that it was just lot of nasty noise and made speech reading very very hard. Even with my husband and daughter, and I usually do fairly well with them. The food was good, and once we left (all stuffed) we headed over to my sister-in-law's house. Much better. Still hard, as they are not used to looking at me while speaking and would sometimes talk over each other, but it was a bit easier to feel a part of things there. My granddaughter was a delight, and helped save the entire day. We all had fun just watching her as she is such a cheerful 15 month old.

It's been over two weeks since the surgery and things are healing nicely. I do have some swelling near the implant site, but know that will go away in time. Only the top part of the incision seems to have scabbed over and it is doing great. Thanksgiving is this week, and I wish I could say I was looking forward to it. We are driving to a town just over an hour away to have dinner with my sister-in-law, her husband and their two daughters. I dread the whole thing. The hearing in my non implanted ear has gotten worse and the idea of sitting in a crowded restaurant at a table full of people that I can't understand is not my idea of fun. But, it is important to my youngest daughter, so I will do it for her.

I had my youngest daughter call and make an appointment with my audiologist today. I was working in receiving and didn't really have time to make the call using my pocket vco. Besides, it is so much easier for her to do it. Anyway, even though I knew he could do nothing for the distortion, I was hoping he could crank up the volume a bit to help me with speech reading. My ability in that area is not the best, but it is better if I can have the volume I need to try and decipher speech. Not much luck, though. He has it cranked to the max, all 95 to 100 dbs and it still sounds like people are speaking softly. Sigh. It is soooo frustrating!!! I am counting the days till activation and just hope that makes life less stressful. Work can be so hard as people keep forgetting to enunciate and look at me while talking.
I did quit wearing my hats today, except to go out in the cold. The bands kept rubbing against the implant and I was getting headaches. They also made my glasses rub against my incision and that part is sore now. Most people don't even seem to notice and if they do, and don't know about the surgery, I imagine they just think my last haircut had a minor glitch.
All in all, not a great day, but not a terrible one either. Nothing major, just annoying. 29 days and counting till activation.

Back to work, ho hum.....

Goodness, what a long day today was. Who would have thought an 8 hour day could stretch out so long? It was good to see my friends at work again, and so many are so happy for me now that they know the surgery was successful. My hearing in my other ear is getting worse though and wearing a hat doesn't help. It partially covers the mic and also causes feedback from time to time. I am hoping that once my "fuzz" grows in a bit more I can go get my hair done and at least even this "do" out a little bit. Anyway, just tired and going to just kick back and watch TV.

Post Op checkup and I have my activation date!!

11-13-08
Today went really well. We had to drive back down to Wilmington to see my doctor, but since the appointment wasn't until 9:20am, we got to sleep till 6am. I thought the people in his office were really sweet. We signed in about 20 minutes early, and before I could make it back to our seat from a quick trip to the restroom, they were escorting us to a different part of the building to wait for the doctor. It only took a few minutes to realize that they wanted me to feel comfortable with my lovely new haircut, even though I was wearing a hat. They really are such nice people and really seem to care about their patients. Dr. Brinson was really pleased with my progress and he took the tape off the incision and all the stitches had dissolved away, just like they are supposed to. I did have an allergic reaction to the triple antibiotic I had used, so he wrote out a prescription for an ointment for that as well as an antibacterial drop for my other ear. Since that ear uses a hearing aid with an earmold, it had developed a small problem that the drops will fix in no time. My activation date is set for December 18th, in the afternoon and I am so excited. It means I just might be able to understand my granddaughter at Christmas time, which can be hard enough when they are only 15 months old. Oh, and to actually be able to follow a conversation again with my daughters...I am so thrilled and just want the time to fly by. I know it won't be easy, but I am hoping that since my hearing loss took place in such a short time I have an edge that will allow me to learn this new way of hearing quicker. Will try and keep this going at least once a week, but life will be pretty mundane and quiet until activation.

Good-bye icky pressure bandage!!

10-09-08
I finally get to take that nasty thing off. It has been the most uncomfortable part of the post surgery experience. Bob says my ear incision looks really good, even if my ear is all scrunched up like a cauliflower. It feels so good to have it off, and I can nap more comfortably, too. I have done a few loads of laundry, no major activity, other than cooking supper. That wasn't really hard, nor did it take long. I have even taken back the chore of feeding all my critters (dogs (2), and cats inside and out). They seem happy to have me back, so that makes me feel good. I just wish I could hear the cats purr, I really do miss that sound. All in all, I feel really good and though still kind of blah energy wise, I know I have been very lucky.

Day two

10-08-08
Slept off and on in the recliner and didn't need to take more than a few pain pills total. I just hate the additional "loopy" feeling I get from drugs more potent than tylenol, so that is all I am using now. I have stopped taking the nausea pills as well, since they aren't needed. The incision area still doesn't hurt that much but this "glasscock" pressure bandage is so damned annoying. Even though it is velcro'd they added extra surgical tape to my forehead and it pulls every time I smile or frown. I don't have a lot of energy, but over all feel good. Just watching a lot of TV and taking lots of mini naps. Hubby is waiting on me as needed, which has been kind of fun, and a change of pace. Bob has taken the entire week off from work to be home with me. Such a sweetheart.

Surgery Day!!

Wow, what a long day. My husband and I got up at 3am and made the drive to Wilmington in plenty of time. Both my daughters were there, along with a friend, to give me support, or so I thought. I spent the last half hour before being prepped for surgery cuddling the girls like I used to then they were little. I think it made them both feel better, and didn't hurt me either. I was taken into pre-op for all that mundane stuff that needs to be done and then settled into my gurney and made comfortable. The girls came in with my husband and friend and stayed with me for a while. After they left (all but hubby) the surgical team went to work on my "little cocktail". Once that was given, hubby left and they started to wheel me towards surgery, that was it, lights out and I dont' remember anything until they woke me up in recovery.
From what my husband has told me, here is a quick rundown on what happened to turn a three hour operation into four and a half hours. They started the procedure, got the implant in place with no trouble at all. Then, when it was time for the electrodes to be threaded into my cochlea, the trouble started. When the surgeon drilled through the mastoid bone to the cochlea, he found ossification (boney growth) in that part of the cochlea. They had to stop surgery right then and there and take x-rays to determine whether the ossification was full or just partial. I was lucky, and they were able to find a spot farther along to drill and complete the threading of the electrodes. It turns out I had meningitis as a child, with a high fever, and didn't know it. Not unusual for the 50's, I suppose, but I was once again lucky in the fact that the fever broke before taking my hearing all those years ago. My surgeon thinks that the combination of the ossification, a genetic link to early hearing loss and the MM all added up to what has happened in the last three years with my hearing.
So, after being rudely woken up post surgery, I was back in my clothes and in a wheel chair heading out the door by 1pm for a long drive home. I stayed awake in the car and actually wanted food about half way through the drive. We stopped for french fries for me (no salt) and a burger and fries for hubby. I had no dizziness at all, and no real nausea, just indigestion and mild discomfort in the incision area.
Once we got home, I crashed in the recliner and stayed there all evening. I finally emailed my family (my kids had made the basic calls earlier) and checked in with my friends at the forum and now it is lights out.

Surgery is tomorrow...

11-06-08
I am so wound up I know I can't sleep even though I have to get up at 3am to make the trip to Wilmington, NC with my husband for my surgery. We have to be there by 6am with the operation scheduled to start at 8am. I have spent the last months preparing for the worst, but hoping for the best. My will has been written, as has my power of attorney and living will. Not that I think they will be used any time soon, but I learned after that passing of my mother-in-law that you just can't leave things like that undone.
I have spent the evening vacuuming, doing laundry, making my bed, moving a recliner into my computer room so I can sleep there and watch tv, use my computers and not have to do much walking around. I don't know if I will be dizzy after the surgery, as each person reacts differently. With the help of friends at my alldeaf forum, I have taken care of all those "little things" you don't really think about. Like paying bills in advance, buying items I might need after surgery, making lists for my husband and daughters, just getting totally organized so I have nothing to worry about after surgery except getting better.

Making lists and planning ahead

10-10-08
After meeting my new ENT doctor last week, I was getting anxious about my surgery date. We got the call today that my CI surgery will be done on Nov. 7. Wow..less than a month away. I am nervous, kind of scared, but excited and hopeful at the same time. I have had my meningitis vaccine, had a second CT scan so the surgeon knows what is going on in my head and now it is just a waiting game. I am a list maker, so I know that is what is going to get me through till the surgery date.

How it all began...

How it all began

9-2-08

Hi, my name is ET (Elizabeth). For all practical purposes, I am deaf in my left ear and have profound hearing loss in my right. What hearing I do have in the right has been hampered by nerve damage. This causes me to “live in Charlie Brown’s classroom”.

I have Meneire’s Disease (aka: Morbus Meniere or MM ). No, it is not contagious. There is no known cause, nor any known cure for this disease. It attacks your balance, your hearing (to some degree) or both. Vertigo (this is where the world is spinning out of control and you are standing still, it can be quite unsettling) is another aspect of MM.

People with MM that have major vertigo attacks often end up worshipping the "royal thrown". They have a hard time just walking and many of them spend days in bed (either with the actual vertigo attack or the aftermath). I have been lucky in that respect and my attacks last for only a few minutes, if that at all. I have not been able to walk a straight line in two years without concentrating and I have heard that some people think I am mad when I am walking. This is not the case at all, I am just trying to walk the best way that I know how, without looking like I have been drinking or bumping into walls. Stress is also a factor with MM and can bring on an attack.

As I have stated, hearing loss is common with MM, closely followed by Tinnitus (sounds in the ear that do not exist except in the brain). For me, I hear whines, hums, chirping, cicadas, etc. (one ear has had the sound of a weed eater that never runs out of gas) and lately, I hear heartbeats and planes taking off (before this happens, I can lose hearing altogether until departure time). Oh, and recently I have added a full mariachi band as well as sci-fi sound effects. The Tinnitus is 24/7 and for this reason I no longer sleep through the night. Through all the testing, they also found that I have a genetic link to early hearing loss, but no autoimmune problems that can be detected and no other known reason for my sudden hearing loss.

If my hearing continues to deteriorate, I have been told that I am a good candidate for a Cochlear Implant. So, who knows what the future holds? Being hard of hearing has so many levels that people with “normal” hearing just don’t seem to understand. If I said I was deaf, you would know that I heard nothing. If I said I was blind, you would know that I saw nothing. But, when I say I am hard of hearing, you have no clue as it differs from person to person.

10-02-08

Update:

Well, I am now at almost zero speech comprehension in my “good ear” so I am going to have a Cochlear Implant. I have done all the tests (and flunked them) and should find out my surgery date within the next few days. I will be out for a minimum of one week, then it will take 4 to 6 weeks for the swelling to go down and the healing to finish. Once that is done, I will be “activated” but it will take a while for me to be able to understand speech again, if it works.

I am so excited!!

Wish Me Luck!!!!!!!