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Unread 03-09-2009, 12:53 AM   #32 (permalink)
candybrowneyes
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Well I guess its my turn sorry if it turns into a book, but i know you all like to read...

Last summer around July/August I had noticed that I was having some dizziness and what seemed to be a sudden loss of hearing that fluctuated from time to time. At first I really didn't think much about it, I just thought it was something that came and then would go. The last couple of weeks in August though I started getting really bad Tinnitus. It wasn't just a small ringing sound it was loud and it was so bad I couldn't sleep. During the day I was scared to drive and do my normal every day things because I couldn't balance right, my head would hurt, my hearing would go away then come back, go away then come back.
Scared out of my mind I went to the ER, I thought something was wrong with my head. They ran a number of tests, blood tests a CT. When they found nothing wrong with that stuff they ordered an MRI the following day. I went in for it and go the results back in a couple days. They called me and told me they didn't find anything tumors or anything of the sort that would explain what was going on. I asked if maybe it was related to Diabetes because it runs in my family but the doctor assured me it wasn't because they checked for that.
I was very frustrated and because my hearing was an issue I called a place to have a hearing test done. The place I had called had told me it was about a month till they could get me in for a test. I took the appointment (even though I thought it was rediculous to wait that long.) A few days had gone by and the symptoms seemed to lesson except the Tinnitus. It was driving me nuts because it was constant and it just never seemed to go away. It was like I had a whole lot of crickets chirping at night in my head all of the time.
Frantic in the morning I called my mother crying she told me to find another place that could take me. The first place I called I was in tears I'm surprised the lady could hear me. I told her what was wrong and she said they could get me in for a test within the next hour. She was appalled that the other place was going to take so long.
The Audiologist I went to see is Bill, it was his own practice and his wife Wendy was his secretary. When I came in, they both made me feel so at home. I was nervous of course but he brought me into the office and had me sit down while he took all my history down.
We started all of the tests, first he checked everything out in my ears, he said they were pretty red inside, more than he liked to see. Then he did a measurement of some sort I think it had to do with fluid in the middle ear? I really didn't understand a lot of what he was saying to me. Then came the hearing tests. Say ice cream, say ball, say sidewalk.. (i know you all know how it goes, lol) I missed a few words and repeated a few back that weren't right. And while he did the tone tests it was also hard because of the Tinnitus. The sounds were the same sounds I was hearing all of the time so it made it hard.
We finished the tests and he took a few minutes to go over everything. I knew I hadnt done very well =( He then came back and said I had a moderate-severe loss and sat me down to show me the results of the audiogram. He showed me where my hearing was, what normal was, and how much loss I had, and how much I still had left. The tears started to flow and it was hard for me to take in. It was more hard because I knew something was wrong I just didn't know what. Then he also said he wanted me to see an ENT because of the fluid test and something else, I don't remember what it was right now. So he referred me to an ENT at the University hospitals. He did tell me he recommended Hearing Instruments for both ears and took me to the other side of his office. He showed me many models and brands and showed me ones he could put on me that day.
Because my hearing was moderate-severe he handed me a small BTE aid and asked me what I thought of it. I said it was small and it looked nice. He got 2 of them and hooked them up to the computer where he started to program my audiogram into them. A little while later he put them on me and we started to tweek things. I will tell you I cried 2 times that day. Once when I knew how much hearing I had lost and once he put those on me. It was brought to my attention that my hearing had been bad before i thought i was losing my hearing as well. I was hearing so many things I hadn't heard in so long. I heard a radio he had on the whole time in his office i didn't know was on!

That was about 7 mths ago. Since then I had seen the ENT we did the tests and I have been Diagnosed with Menieres Disease in both ears. My hearing has also dropped a number of decibels since. The latest drop was in my right ear in January, 5 decibels just in that month. I have had to have an upgrade in the receiver in both aids so that the gain is greater.
This has been a very painful thing for me to deal with. While I put on a smile every day and I try to make the best of it my friends and family just do not understand what I am going through. I feel like I am caught in Limbo. The world of hearing people is no longer the same. A world where I felt comfortable starting up a conversation with a group of people, laughing and joking around with my friends and family. A world that has turned into one I can no longer understand to the best of my ability. One where no one understands me...
Trying to slowly transition my life into the Deaf community. A community that doesn't fully understand what it is like to become Deaf after having hearing your whole life.
Its a double edged sword that is hard to swallow any way you look at it.
I enjoy music more than anything in my life and knowing that some day I will not be able to hear it breaks my heart. It sounds weird but some days I wake up hoping that all of my hearing is just gone so I don't have to go through all of this hard stuff. People think because I have Hearing aids that I hear everything. And when I miss something they think I can just turn them up and all will be okay.

When I learned of my disease I enrolled into ASL and have enjoyed every minute of it as I have always thought it was a beautiful language.

Some days I can stand my life and others its tough. I am just glad I have a place like AD to come to.. I feel very blessed to have met the people I have met and the ones I continue to meet in this journey...
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