Visit with Rheumatologist  was a waste of time..took an hour to see him and the visit lasted less than 5 minutes..no blood test to see if the pills are doing damage. Just a few questions and an appointment in 6 months. Sigh.. I am supposed to see my Audi soon but hesitate to make an appointment as I have been hearing about the N5 failing.. No news is good news, Right?
 There has been an increase in sounds that actually make me cringe/hurt and I am worried about this big time. I do not want to have to go through the surgery again, especially with the ossification problems I have had. I guess I am just going to have to bite the bullet and call.

I have my first appointment with my Rheumatologist since being put on my new meds on Thursday. I imagine they will draw blood to see if there has been any damage to the liver. Hopefully not. Switching from just eye drops to eye drops and pills is a gamble but my eye doctor and I felt there was no other choice. The pressure in my eyes just would not go down and he found vasculitis in both eyes. I know the course of treatment is working and my eyes are white and no longer water constantly.

I used to listen to music all the time. I loved it all, country, classical, rock and roll, r&b, didn't matter. It all sounded good. If I heard a voice that was awesome, I would even get goosebumps, or shed a tear. Then, it was all gone. Don't get me wrong, CI's are a medical miracle. They just can't make music sound like it once did. I can understand the lyrics, sing along (only when I am alone because I have no clue how I sound anymore), recognize the song after a few lines but I have no clue who the artist is (except for one song, at least that one time..I knew it was Elvis singing when I hear "In the Ghetto").
 Case in point: hubby took me out to eat dinner and they had music playing outside the restaurant. I knew the song.. "It's a wonderful world" but I had to ask the hubby who was singing it..was it Louis Armstrong? Was it Michael Buble? I had no idea.
So, why am I bringing this up? The answer is the show called The Voice. I don't know if you follow it or not, but I loved the concept of the judges picking singers by the sound of their voices alone. No first impressions other than the voice. I can't always appreciate the voice, but I still like the show and love the judges and their banter.
This past season was exceptional. Enter Chris Mann..a classically trained Opera singer. This guy was awesome!! While I didn't have the same response when he sang outside his comfort zone, I cried each time he sang opera. Still not 100% sure why, just happy that I could feel that gut reaction once again. I was able to close my eyes and "hear" the way I knew he sounded. That is my biggest CI moment to date..and I am grateful for it. Such a shame he came in 4th. I thought he should have won..but, go figure?

I was looking back over my posts for the last few years and realized something really important was missing. About a year after I was sent to Chapel Hill for my second implant I had my "yearly" check up with my ENT. We got to talking and he thinks he came up with a diagnosis. Somehow, possibly from an upper respiratory infection, he thinks I have acquired an autoimmune disease called Cogan's syndrome. It is rare, but he has treated others. The sad thing is that it can be treated and hearing CAN be saved. So, why did I lose my hearing? Because it is so rare, and there is no "test" for it, most doctors have not heard of it. The symptoms can also mimic other diseases. It has taken my hearing and has also attacked my eyes. The eye problems actually started before the hearing loss but I could not connect them until I knew all the facts. I have had chronic Iritis since 2005. What that means is that the iris becomes inflamed and small particles form that obstruct vision. Left untreated, it can mimic cataracts, lead to actual cataracts, glaucoma and blindness. Treated, it can lead to cataracts (I have them, but my doctor assures me they are minor and nothing to lose sleep about) and glaucoma. I have quite an array of eye drops that I take and also a drug called Plaquinol that was first invented to cure malaria..one of the side effects is that it helps with inflammation and has been used to treat autoimmune diseases like lupus and rheumatoid arthritis. The funny thing about auto immune diseases is that they often travel in pairs..I guess they get lonely and invite a friend to come and stay. In my case, I also have Sjogren's syndrome. Dry eye, dry mouth, dry skin, etc. No cure for either, but we treat the symptoms.
On the bright side, since I live in the south where mosquito's thrive and go forth and multiply, I won't contract malaria.. but I might lose some of my vision in 10 years or so..
Life is a constant Catch-22..but it is my life, and I am living it my way.

http://www.drugs.com/health-guide/cogan-s-syndrome.html

Believe it or not, I am working on my Dad's memoirs. He was born in 1921 and served in the RAF during WWII. Both he and my mother were born in England and he has been recording cassette tapes recounting his life. What? Cassette tapes? Yes, but it isn't easy. I do the play, rewind, pause, play shuffle. I can type a few paragraphs this way and then have to rest my brain. It is slow going, but I will get it done. This all came about from his response to my niece when she was in college and asked questions about the years he spent in the RAF. Since then, it has taken on a life of it's own and I hope that I can finish it before his life ends. He may be active and computer savvy, but he is 91 years old, after all. Wish me luck!!

Words of My Father

Oh, my. I have been lazy where this blog is concerned, haven't I? So much has happened since 2010.  Where to start? I still have my phone, it's an EVO and I still love it. I gave up on the t-coil as there was too much noise interference, and I don't really use the remote much anymore either. I find that I have one setting I like and I don't change it. I still hate phone calls-it takes too much concentration to listen and translate what I hear into what I actually understand. (I have the dual cables that I can plug in and they work well but are a pain to plug in.) For that reason I am thinking about getting an iPhone. There are two fairly new CC programs that work best with the iPhone. Yes, it is true that there are also ones with Android, but you have to have 4G to make them work. I live out in the country, which is where I would use my phone most, and only have 3G there.
 I have been back to my Audi for yearly checkups and she tells me I am doing really well. I don't always feel that way, as my testing is done in a quiet lab and I live in a noisy world, but I do fairly well. I run into people that I have not seen in a year or so and they comment on how much better I am hearing and that I am more like my old self.
 I still work at Wal-Mart, coming up on 22 years in July (Jim, from River Bend, if you still follow this, please stop in so I can meet you..I work Tuesday - Saturday in the back offices..stop at site to store and ask for me).
My husband and I celebrated our 30th year of marriage last May and we are still best friends.
 In December of 2010 we welcomed our second grandchild into this world, Gemma Elizabeth Nyberg. Right from the start she was and still is the most "smiley" child I have ever known. Her older sister, Gabi, is my heart but Gemma is my angel.
 2011 was a fast travelling year and Bob and I had our first "real" vacation. Our oldest daughter chose the Outer Banks of North Carolina as the site for her wedding (September 22nd). It almost did not take place thanks to the angry, and destructive, powers of Hurricane Irene. The original site for the wedding was in the southern part of the islands, near Okrakoke. Thanks to Irene all the roads were washed out and the ferry was stopped for safety reasons. After a bit of a scramble, they found a site in the northern part of the islands in Carolla, NC and it was full steam ahead. Although it was scheduled to be an outdoor wedding, Mother Nature intervened and it rained.  We moved everything inside and the wedding was lovely!! Bob, my husband, and I played tourist along with my sister and her husband. We visited the Wright Brothers Museum at Kitty Hawk and loved it. We ate in some wonderful restaurants and did the usual tourist shopping. We even managed to visit one of the many lighthouses there. Over all, just a fun time.
 Life settled down and we were looking forward to Christmas when our lives were shattered with the news that our youngest daughter was in a car crash and had been airlifted to a Hospital in the neighboring county. It was a catch 22 situation..to be airlifted meant it was bad but to be taken there was much better for her than our own local hospital. She ended up being cut out of the car and had a broken femur, hip and shattered elbow. The elbow was the worst part as it had broken through the skin and parts of the bone were left at the crash site. The next day she was in surgery for hours having pins and rods put in place.
 After months of rehab, lots of work, sweat and tears on her part, she was able to walk down the aisle at her own wedding on April 7th of this year. The site for the wedding was lovely. Tryon Palace, the first site of the state capitol of North Carolina. The grass was green, the flowers in full bloom and it was a sunny, if windy, day.
  I am so happy for both my girls..they have each married the man of their dreams. Not only that, but these fine men are also their friends..to me that is the best foundation for a long and happy marriage.

N5 and falling in like...

Wow...what a difference. I went to Chapel Hill on Thursday for my post op appointment and although a little "mushy", I was healing up fine. My doctor asked when I wanted to schedule activation and my response was the sooner the better. His response was even better..how about today. He called the Audi and was told to send me right over.

This activation was so different. After my first transplant, I felt let down by the experience. My audi at the time spent a grand total of 20 minutes with me and sent me on my way. This time, it was a 2 hour visit and I came away a lot happier. I am now sporting two N5 processors, even though my first implant is a Nucleus Freedom. It is so cool..I have a remote control that works with both. No more snatching the processor off to try and find the right mix..they stay in place while I play with the volume and sensitivity.

I find the compact size easier to deal with and it uses only 2 batteries (no rechargeable ones at this time..still waiting for fda approval). The plug for my cables is more discreet and in a better location.

It's more compact so it hugs the head more and the coil is shorter and less noticeable. It is also bluetooth compatible which led me to buy a device and new cell phone today. It's going to take a while to fine tune things, but I like it already. It is way better than using the neckloop..less interference and better sound.

All in all..I am a happy camper for the moment. Just wish the swelling would go away fast and I really miss blowing my nose...

Don't mean to be gross..but I can only blow "gently" now and that does not work well with a sinus problem...but..the alternative is an air pocket..and that I have had before with the first surgery...

Later all..it's almost bedtime..