Wednesday, July 27, 2011

Weird Sounds coming from my Implant

Three days ago while I was out I kept hearing weird sounds with my implant. Every time I talked it was "echoing and sounded like a robot it was bazaar. Its not the noise I heard a few months ago. So the first thing I did was change the batteries. NO LUCK. Then I changed them again NO LUCK. I started panicking. I also used my dry and store every night so I knew it wasn't the heat. Its definitely random.

Yesterday I went to the doctors it was fine until I arrived at the office and all sudden I heard the robot sound AGAIN. I started to panic because I was alone at the office and I knew this would be a problem if I couldn't hear what the Dr was telling me. I switched the batteries. AGAIN NO LUCK. Then I called cochlear as I'm waiting in the doctors office waiting for my name to be called. I told the secretary I was deaf she asked me " what does that mean" I said that means I CANT HEAR YOU! and how I wont be able to hear my name called and if she can please come and get me.

Finally cochlear picks up I explain the situation and the implant goes back to NORMAL. She said not to worry and that she will get a coil send out to me right away.So I was supposed to get the coil today waiting and waiting because she said she will overnight it. It turns out they messed up on the shipping its 3 days shipping so I will get it Friday. SIGH.

So back to the Dr's My name was called even though I specifically said I WAS DEAF. No one listens to me. No one came and got me. The nurse she said was calling my name for a few minutes. I told her sorry I explained the the secretary that I WAS DEAF and of course the secretary NEVER TOLD THE NURSE. Finally I saw the Dr. 40 minutes later.

Last night, As Im walking out the door to go to the movies that sound came back again! I didn't have my remote with me so I couldn't troubleshoot it. Then it stopped as I sat in the car. Then as the movie started it started up again and lasted for the entire movie even all the way home! So I ran to my room got out my remote and the remote claims there is no problem.

Tonight I changed coils from my backup and the problem still occurs.

August 24th I have my 2nd (Every 3 month Mapping appointment).

To be Continued...

Hope you are all having a great summer. It is so hot here in NY although the past day its been cooler.


Thursday, July 14, 2011

My Story featured on Cochlear Implant Online!

I was asked by Rachel to write a story about myself for her website. For some reason I cant post the link. Thank you so much Rachel for asking me.

Danielle was born with a moderate-to-severe hearing loss. She was fitted with hearing aids at a young age. She shares the struggles of growing up with hearing loss. However, there is a happy ending to the story!

My name is Danielle. Since birth, I have had a Bilateral Sensorineural Hearing Loss (Nerve Deafness). I am the only person in my family with a hearing loss. My parents didn’t really know what to do for me when I was younger, Because no one told them about services that were offered at the time.

I struggled my entire life in Special Education. I was in a regular public school and BOCES (Board of Cooperative Educational Services) for hearing and speech services since age two. Everyday I had speech therapy. It wasn’t just one hour. It was hours of speech therapy. At the time, I thought this was required. I didn’t know I had a hearing loss until I realized I was different at age 17 years old. That’s when I realized something was wrong with me. I thought it was normal. All my life, I have been very isolated and stayed to myself because ” I am different.”

I don’t recall learning that much. I wasn’t able to hear that well with my hearing aids and my FM SYSTEM. My parents have bought me numerous pairs of hearing aids that didn’t help me at all. I know how to lip read very well. That is how I get by. When I reached high school, I was struggling tremendously. I still had speech therapy where BOCES would come in my high school and pull me out of class just to lip read. I know how to lip read so well that if you are a table away and you have your mouth covered I can even read the side of your mouth. It's amazing. That’s how well I was taught. The only best thing that ever happened to me is speech therapy.

I was in a really bad setting in high school. I never really got to learn. All I remember was being pulled out for speech and a TV always on in the classroom. Now I look back and realize this was the worst experience of my life. I had an FM system on my desk. I remember this one kid used to push it off my desk and my teacher didn’t do a thing. The FM System helped me hear a little bit. I would go for days without the FM system because this kid knocked it off. It would break and had to be repaired.

I understand my parents didn’t know what to do for me, but I would have done so much better in a deaf school. After my last year of high school, I was thrilled to get out of there. I wanted to start driving, but I had a really big fear because of my severe hearing loss. I didn’t know anyone who was like me. I was all alone.

Usually when I came home from school, I would do some homework and study for tests. I would fail because I never knew what was going on. I didn’t have a note taker like I was supposed to. I was very isolated, never really had any friends. I never trusted anyone but my family because I was always made fun of. Months later after graduation, I realized I wanted to become a teacher. Even though I struggled in school, I had this one teacher that I loved in speech class. She always told me I would make a great " teacher" someday. I believed her.

She inspired me to go into the field. One year later, I applied at a college near me. I had to take an Entrance Test, and I asked for services: extra time for the test, FM System, etc. I was used to having multiple choice questions just with 3 answers. I remember taking this test. It took me 8 hours. I failed it. I didn’t know the science and math. I had to be placed in non-credit courses to learn before I got into regular college-level classes. It was awful. I felt dumb and stupid, and I was so upset with myself. I cried for a month. I was so mad at myself and thought I was a failure.

One year later, I learned math, science and English for the first time in my life. It was a whole new world for me. I passed those classes with flying colors. I stayed at the college campus for hours and hours after class was finished just to get a tutor to help me. I FINALLY DID IT!

I started college-level classes in 2006. That’s when my life changed forever. In class, I saw someone using their hands and I had no idea what it was. It was an interpreter using American Sign Language. I was shocked, I had never seen anything like this before. I asked my deaf/hard of hearing counselor what that was and she said ” ASL”. She then told me, “You know that you’re not the only hard of hearing person out there.”

I said, “Really? Please sign me up for this class next semester.”

I knew I had a problem my entire life, but I wasn’t sure what was wrong with me until my mom explained it to me. I remember asking her “Whats wrong with me?” That is when I realized I wasnt just like everyone else. I was different.

In 2007/2008 I took ASL classes. I met two people that were deaf. I was so happy to be surrounded by people like me. It was like heaven. I was so happy to go to college just to talk to these two girls because they were just like me and we understood each other.

In 2008, I mastered all the levels of ASL. I became the ASL president for 3 years. My ASL group went to Gallaudet University for the deaf a few times. It was the best experience of my life. I changed my degree to major into ASL.

In college, I had an Interpreter after I completed my first ASL class. I also had a CART captionist (a person who uses a laptop and types everything the professor and students say). It can be printed out if you ask and you take that home to study. CART is amazing. It saved my life when I didn’t know much signing

Five years ago, I got very ill and couldn’t finished college. I was so upset because I was only four classes away from graduating. Then my hearing worsened from severe-profound to profound deafness. I cannot benefit from a hearing aid in my right ear. I can benefit a little with my left.

In 2008, I was at the 1st NYC Walk4hearing. I raised over $3,000. I had the pleasure meeting so many new people there. I was introduced to this one woman and her name was Jen. She was wearing two devices on her ears that was attached to her ” head”. I asked her what they were and she told me they were cochlear implants. “They help her hear,” she said. She then told me she was profoundly deaf during her entire life and never heard one sound before up until she received her implants five years ago. For one year, I researched about Cochlear Implant’s after I lost most of my hearing in my right ear. Then I knew that this was best for me. I wanted to be able to hear my niece.

In Feburary 2011 I had surgery for a cochlear implant. I was so scared because of my illness, but I needed to HEAR. I needed to just fit in. On March 8th, 2011 was the best day of my life and was able to hear within 10 db. I was activated. I heard water, a pen drop for the first time and so many more sounds. I couldn’t believe all the sounds I have been missing out on my entire life. My favorite sound is the ocean its so relaxing. I didn’t know the ocean had a sound until I went to the beach with my cochlear implant. Everything makes a sound. I love the option how I can be in both worlds. deaf when I can’t take anymore sound for they day and then when I want to hear I can just put it right back on my ear. Having both worlds is a great experience. I am so grateful I have this implant. A month after I was activated, so many people came to me and said ” You have the biggest smile on your face.” ” You are seem so relaxed”. It’s true I have been so relaxed with this implant because I don’t have to look at you and read your lips. I can hear mostly everything your saying. If it weren’t for Jen, I wouldn’t have my cochlear implant today. I didn’t know Cochlear Implants even existed. Jen changed my life and I am so happy to have her as a friend.

This is my personal story, not every story is like mine. I basically had to advocate for myself my entire life. Now that I’m 25-years-old and will be going back to school in September to finish my degree. I also will continue to be an advocate. I am involved with the Hearing Loss Association of America. If you recieve the Hearing Loss magazine I will be in the September 2011 issue.

For all parents out there: It can be hard to deal with children who have a hearing loss. My parents were lost and confused for years. They didn’t know what to do for me. My mom was basically in DENIAL. She was afraid that people would label me. Early Invention these days is wonderful. It has been around since 1985, but my parents had no idea. No one told them. There is so much accessibility these day for kids. It’s amazing! Here on my blog on the right hand side is a list of resources. If you cant find anything and need help finding support in your state. Please dont hesitate to email me. I am always here to help.

To all my Readers out there: I hope you enjoyed my story. Most of all to all you children and adults: Follow your dreams and dont let anything stop you!!!

As Marlee Matlin Saids: "deaf people can do anything EXCEPT HEAR." It's true we can do ANYTHING.


Monday, July 11, 2011

Walt Disney World Experience 2011

Thanks to my parents about 9 of us including my niece went to Walt Disney World in Orlando Florida! I haven't been there since I was one years old and dont remember anything. It was so amazing to be able to hear almost everything. It was nerve racking the first day. The sounds the music it was overwhelming. I was able to go on 2 rides with my cochlear implant without it falling off. It was the best experience ever. I have so many pictures and I finally met my favorite GOOFY!!!!! Growing up I called him " GOOPY" I couldn't hear the "F" sound. We were there for one week. It was so hot and did lots of walking thankfully my mom rented a electronic wheelchair which helped when my legs hurt. I had trouble outside in the park when music was playing while we were eating didnt realize I was yelling because I couldn't hear myself talk. Then I realized when someone said to me " YOUR TALKING TO LOUD." I was wondering why they were yelling back LOL. I didnt change any programs even the noise program because I didnt think I was on the go all day long. I'm wondering if that would have made a difference. The last two days was pouring rain like crazy. First it drizzled for a little it was nice not having to worry about my processor getting wet. At first I was panicking but it didnt really get wet at all because I had my hand over my implant. Finally after ten different stores I found this WATERPROOF money holder. This came in handy I put my implant right in there and it was fine. Hearing most of the disney music was awesome hearing almost every word. My favorite part was the BEAUTIFUL CASTLE and the PARADE. Being able to hear on this trip was even better.

Playing in the pool with my niece was awesome. Being able to hear her playing in the water and babbling away. I told her that she cant splash her aunt. I wore my implant for about 5 minutes. I wanted to experience what the sound in the water is like then I took it off. I was standing up I wasn't in the pool only my feet were because I was nervous.

School starts in September I cant wait to go back and finish my degree. It has been 5 years. I am very excited to go back... this is going to be another experience being able to hear well in a classroom setting. Something new! I will still have CART and and interpreter.

Next month I go back for my second 3 month CI EVALUATION. I cant believe its 5 months since ACTIVATION. It's amazing. Im going to find out if I am a candidate for my Left ear.

Until then I hope you all are having a wonderful summer! Enjoy it and stay cool. It's very hot here in NY.