First, I was really happy to have my mom and sister accompany me. Adam had already exhausted his personal/sick days with my surgery and subsequent appointments. I actually felt it was best for the kids too to have dad since mom would be gone.
Upon finding out about the trip, my mom planned a short jaunt in Las Vegas. It is really hard to describe the Vegas experience... it is one you all need to experience at least once. The town is literally in the desert. What killed me was the airport was pretty much right down town. I probably only saw about 4 major casinos and little bit of Old Vegas, so I didn't even begin to tap into it all, and sadly I didn't see one Elvis, not one!!! I won nothing... I wasn't even lucky enough to keep the slots running for long... mom was pretty lucky, winning a few times and jenn pretty much fell into the unlucky category too, but got more playing time than me. I would love to go back out there!!!!
I have to say about the company I was a guinea pig for, Advanced Bionics, are truly from my perspective a great organization. I enjoyed everyone I met. I spent most all of my time with one person. The tests were different than anything I have done before. I wanted to do well and I was concentrating so hard, I got a headache. One of the things he did was he kept having me change processors (the part I wear w/ the magnet) and he wouldn't tell me what he did to them as far as changing the programming strategies and one of the changes he made, made a tremendous difference in the clarity of what I was hearing(it would have ruined his experiment to tell me what he had done, I called him a mad scientist..lol). Unfortunately, they are not allowed for a variety of reasons to give me the programming, only my own audiologist, Joyce can do that... so when I left, I felt like I could hear nothing with my usual processor. I could have cried. Yes, the difference was that big for me. The good news is that, I am scheduled to see Joyce on October 5Th, so it won't be long until I get those changes. They had indicated I may be asked to come back out, and that is in my opinion a great opportunity... Mushy part here.... When I lost my hearing suddenly, it was a horrible and sad time for me, and yes for a while I thought my life was over. I adapted, adjusted the best I could... when my hearing dipped last year and I got the implant, it was the first time I really felt hope again... honest to-goodness pure, sweet hope. I am not an engineer, but if what I can describe for the smart guys can help a little, then it makes all of the sad stuff a little bit better.
Which brings me to my next little bit of drama....
So, I immediately emailed my principal and let him know it was a really cool experience and that they may want me again in the future and the company had said some of their test subjects have no problem getting sick leave to do the testing.... my principal said that I needed to contact the superintendent, so I did... The next day I was being hammered because I forgot to do the professional leave request (I was totally at fault, had gone through all of the other steps as far as talking to my union rep about days off, my assistant principal about arranging a substitute and lesson plans)... The conversation got ugly between myself and my boss and he said that he would recommend any further testing with the company and time off result in a "deduct day." May not sound so bad, an unpaid day off work, but it is a scam... because we only work 9 months a year but get paid over 12, they charge almost 2 days of pay.... one deduct day is probably the equivalent of a months worth of groceries for my family.... no exaggeration... So, now I need to go see the superintendent on Monday.
To make matters better or worse.... the university of Washington in Seattle is doing a music and CI study and would like me to participate. This all puts me in a real pickle. Being hearing impaired and wearing a cochlear implant is my life now. I want to help the research, I want to be a part of that... and don't feel I can turn my back on these wonderful opportunities, yet I have a financial obligation to my family too...
Even as I write this, I tear up... Say a few prayers for me that it will all have a way of working out... I am emotional about it, because the road I have traveled has had quite a few bumps....
Saturday, September 29, 2007
Thursday, September 27, 2007
the trip
I am going to get a short post out now, and a longer one later..... so stay tuned for that.
I didn't get back to Akron/Canton airport until 9:30 a.m., got home shortly before 11, got showered, ate and headed straight to school... after flying all night and very little sleep on the plane, this made for an interesting afternoon with 12-14 yr. olds. By the time I got home my eyes felt crossed and I nodded off in the chair. I went to bed at 8 last night, thus the reason I haven't posted yet!!!!
We left Friday afternoon (my mom and sister and I) and headed to Vegas. I loved it... Nope... I didn't win anything but that place is unique to say the least.
We headed to LA Sunday afternoon. The drive was slow going because of the intense traffic. One of my lasting memories of LA will be the traffic.
I can't say enough about Advanced Bionics. I met some really cool people. It wasn't easy for me... some of the tests I would concentrate so hard, it earned me an instant headache.... but very interesting nonetheless.
I am hopeful that my school district will allow me sick leave to go back out, but it isn't looking so hot right now...
For the full scoop, check back over the next few days!
I didn't get back to Akron/Canton airport until 9:30 a.m., got home shortly before 11, got showered, ate and headed straight to school... after flying all night and very little sleep on the plane, this made for an interesting afternoon with 12-14 yr. olds. By the time I got home my eyes felt crossed and I nodded off in the chair. I went to bed at 8 last night, thus the reason I haven't posted yet!!!!
We left Friday afternoon (my mom and sister and I) and headed to Vegas. I loved it... Nope... I didn't win anything but that place is unique to say the least.
We headed to LA Sunday afternoon. The drive was slow going because of the intense traffic. One of my lasting memories of LA will be the traffic.
I can't say enough about Advanced Bionics. I met some really cool people. It wasn't easy for me... some of the tests I would concentrate so hard, it earned me an instant headache.... but very interesting nonetheless.
I am hopeful that my school district will allow me sick leave to go back out, but it isn't looking so hot right now...
For the full scoop, check back over the next few days!
Tuesday, September 18, 2007
california dreamin'
I couldn't resist the title.. saw it the other day on my Forest Gump soundtrack.
Ok... here is an update on my hearing....
Some days I still get discouraged. I feel like I am doing so well, and then an old frustration kicks in, and I think I forget how awful it used to be for me before the implant. So, instead of being amazed by my leaps and bounds, I think... why am I not catching it all?? I guess that is probably more a mark of my progress than anything. I know my close friends and family will tell you that my whole demeanor has lightened up a lot, and I am quite sure I can attribute that to less frustrations. I do feel lighter. My shoulders aren't as tight, I have more energy. It isn't a weight loss thing either.. At the end of a typical school day prior to my implant, I was working so hard that by 7:00 p.m. I was on the verge of tears. I just didn't have the heart to tell any of you, including my own husband how bad a typical day used to be for me.
I still have high expectations for myself and am trying desperately to improve my word recognition and lessen my dependency on my aided side. Really, I need time...
So, this Friday I leave for California. It is all pretty unreal to me still. I am trying not to get too hyped up, but I want to do well. I want to have a voice in some small way to help others and myself. If the feedback I give the engineers for Advanced Bionics can help even in the most tiny of ways, than I did a good thing. Those of you that know me well, or know my story even... know that I take everything serious and work myself with all I have. I can't see this as just a crazy adventure. I see it as an opportunity to do something positive. I hope I can have fun too... but that isn't my main objective. Now if a little side trip to Vegas(enroute to LA) doesn't put some fun into me, then we really know I am an uncurable nerd!
Ok... here is an update on my hearing....
Some days I still get discouraged. I feel like I am doing so well, and then an old frustration kicks in, and I think I forget how awful it used to be for me before the implant. So, instead of being amazed by my leaps and bounds, I think... why am I not catching it all?? I guess that is probably more a mark of my progress than anything. I know my close friends and family will tell you that my whole demeanor has lightened up a lot, and I am quite sure I can attribute that to less frustrations. I do feel lighter. My shoulders aren't as tight, I have more energy. It isn't a weight loss thing either.. At the end of a typical school day prior to my implant, I was working so hard that by 7:00 p.m. I was on the verge of tears. I just didn't have the heart to tell any of you, including my own husband how bad a typical day used to be for me.
I still have high expectations for myself and am trying desperately to improve my word recognition and lessen my dependency on my aided side. Really, I need time...
So, this Friday I leave for California. It is all pretty unreal to me still. I am trying not to get too hyped up, but I want to do well. I want to have a voice in some small way to help others and myself. If the feedback I give the engineers for Advanced Bionics can help even in the most tiny of ways, than I did a good thing. Those of you that know me well, or know my story even... know that I take everything serious and work myself with all I have. I can't see this as just a crazy adventure. I see it as an opportunity to do something positive. I hope I can have fun too... but that isn't my main objective. Now if a little side trip to Vegas(enroute to LA) doesn't put some fun into me, then we really know I am an uncurable nerd!
Monday, September 3, 2007
california
Ok... first an update on the week at school... Here is the deal with the f.m. So far, I am doing ok without it at the high school. I am sure I could benefit from it during class change discussions, but so far I have been able to use my office for that with the door closed and it works.
The jr. high... I probably need to exclusively use my f.m. there, but I turned it on the other day and it felt like my spectrum of sound went from being a rainbow to just being red and orange. It used to be the very opposite with my hearing aids... I felt like I couldn't hear until that f.m. was on and in my hand. Now, even though it will help with those sometimes soft speakers at the jr. high, it takes away wait feels like a lot of sound so I didn't have the patience to stick with it. I guess it is the first time in 3 years I feel like I am aware of my surroundings and I feel much more apart of the classroom. So, tomorrow will be "stick with it day" for me and I will work with changing my settings back and forth and using the f.m. exclusively at the jr. high.
I am also going to start trying to just use my implant only at home sometimes. I haven't really done that and I feel like I am not making the progress I want to make at the rate I want to make it. Don't wish me to relax any, it is this fiery attitude that has kept me going the past 3 years and we all know it!!!!
I did hear from the people in California and at the end of the month I am making a trip out there. I will be working for them the 24th and 25th. There are several particular testing areas the man mentioned, and I am really excited and hope that in the end... my listening and feedback can REALLY help. How many professionally trained musicians are struck with a sudden hearing loss in their prime? In my particular case the odds are 1 in 27 million. I think the odds are something like 1/10,000 in the world have sudden hearing loss every year... bilateral (both ears) is much more rare, and with an idiopathic diagnosis like I got... meaning the doctors not finding a disease or virus or tumor to account for my hearing loss, well... that leaves me in a very lonely place. My gut will always be that it was/is autoimmune inner ear disease. I didn't respond to the prednisone when I first went to the Cleveland Clinic or test positive for the antibody they were looking for, but by that time it was 6 weeks after my hearing nose dived.
The two relapses I had in the past six months, which is what caused me to look into an implant and the effectiveness of the steroids tells me it is autoimmune. When I really needed an answer as to why my hearing suddenly disappear I couldn't get a definitive one, and know I am quite sure that I have one, I feel no differently about it all. There was a time I would have given a king's ransom for it, and now I realize that having answers doesn't always settle things within your heart, sometimes all you need is time.
God Bless
The jr. high... I probably need to exclusively use my f.m. there, but I turned it on the other day and it felt like my spectrum of sound went from being a rainbow to just being red and orange. It used to be the very opposite with my hearing aids... I felt like I couldn't hear until that f.m. was on and in my hand. Now, even though it will help with those sometimes soft speakers at the jr. high, it takes away wait feels like a lot of sound so I didn't have the patience to stick with it. I guess it is the first time in 3 years I feel like I am aware of my surroundings and I feel much more apart of the classroom. So, tomorrow will be "stick with it day" for me and I will work with changing my settings back and forth and using the f.m. exclusively at the jr. high.
I am also going to start trying to just use my implant only at home sometimes. I haven't really done that and I feel like I am not making the progress I want to make at the rate I want to make it. Don't wish me to relax any, it is this fiery attitude that has kept me going the past 3 years and we all know it!!!!
I did hear from the people in California and at the end of the month I am making a trip out there. I will be working for them the 24th and 25th. There are several particular testing areas the man mentioned, and I am really excited and hope that in the end... my listening and feedback can REALLY help. How many professionally trained musicians are struck with a sudden hearing loss in their prime? In my particular case the odds are 1 in 27 million. I think the odds are something like 1/10,000 in the world have sudden hearing loss every year... bilateral (both ears) is much more rare, and with an idiopathic diagnosis like I got... meaning the doctors not finding a disease or virus or tumor to account for my hearing loss, well... that leaves me in a very lonely place. My gut will always be that it was/is autoimmune inner ear disease. I didn't respond to the prednisone when I first went to the Cleveland Clinic or test positive for the antibody they were looking for, but by that time it was 6 weeks after my hearing nose dived.
The two relapses I had in the past six months, which is what caused me to look into an implant and the effectiveness of the steroids tells me it is autoimmune. When I really needed an answer as to why my hearing suddenly disappear I couldn't get a definitive one, and know I am quite sure that I have one, I feel no differently about it all. There was a time I would have given a king's ransom for it, and now I realize that having answers doesn't always settle things within your heart, sometimes all you need is time.
God Bless
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