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#31 (permalink) | |
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Registered User
Join Date: Dec 2007
Location: Florida
Posts: 11,995
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Seems like a great support group for people that becomes deaf. |
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__________________
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#32 (permalink) |
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Registered User
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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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Love is the force that transforms and improves the soul of the world... |
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#33 (permalink) |
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Registered User
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Something important
Hi everyone....i'm tommy, a new "3 Years" sudden deafness. I'm indonesian. I've introduced my self at introduction topics. But, someone suggested me to join this thread for more personal experience sharing, so...here i am.
Actually, i have something important to ask u guys. It will be nice if i can share it wih you : 1. Is there any legal rules for deafs like us to drive vehicle? I mean, are deafs like us still allowed to drive cars/motorcycle on the street and have driving license ? 2. How are we supposed to learn ASL if, let's say, nobody around us speak ASL either? To whom are we gonna use it then? I don't say it's useless, it's just, if there are no "NORMAL" person speak ASL, how do i still communicate to them then ? That's all my first sharing trough. If i type wrong words or impressions, please forgive me. Thanks and take care ! |
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#34 (permalink) |
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Registered User
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Hi candy. Your experience is similar to mine. But you're still lucky because everything that happened to you was not so suddent. I was HOH since 8 years old, so i only hear with my left ear. Untill 3 years ago, one night, i had a great fever. My hearing turned down slowly, with many ringing and buzzing noises in mid ear, just like what happened to you. And i was totally deaf in the morning, untill now.
I don't enjoy it, but i can't regret it either. But not like the others who learn ASL so quickly, I prefer learn "MOUTH" first. That's because when i was still "half" normal, HOH, i learn people's talk trough "MOUTH" too. Even i used to watch TV on mute. Yes, i like to learn ASL too, but in my country, it's not easy to find place/community that teachs ASL. If they are, they asked me to pay just to learn ASL, which the amount is not suitable for me. So, here i am. Joining this community, with hopes i can learn ASL better manually. Bydway, i suggest u to try the accupunture method. It's very useful and no pain. It doesn't cost u much too. because accupunture relates to neuro system, things that broken on us. I've tried it, and it gave me progress. So, that's my suggestion, and hopes we can make friend. Take care ! Last edited by candybrowneyes; 03-09-2009 at 09:47 AM. Reason: Didn't trim :) |
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#35 (permalink) | |
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Registered User
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Quote:
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Tell me, what is it you plan to do with your one wild and precious life? |
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#36 (permalink) |
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Emerging from the sun
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Candy and I have discussed our similarities before, (except she is waaaayyy cuter than I am) and our love of music that was stripped away. My experience with Meniere's began around 1993. I was deafened overnight in my right ear in 1988 from an auto-immune disorder. The Meniere's was sneaky. I noticed a strange sound when I moved my head quickly. I realized I could hear low rumbling sounds better than I ever had, like I had a small amp in my head. Then came the swift loss of hearing, across the board. When people spoke, it was like they had a Kazoo for a voice. I received a phone call during this time, and could not make out a word the man said. I went to my brother, and told him to help me get appt with ENT. From there, I was tested, then referred to University of Minnesota. I met Dr. Samuel Levine and his staff. They helped me feel comfortable, and I was given a series of hearing tests: the vacuum test for fluid, tone test (all tones sounded like the tinnitus) and word recognition. They told me I needed an MRI, and they also took me to a blood lab for about 10 vials of blood. Asked me lots of stuff. Did the MRI. After all this, they had me back for the final results. I heard the words "Meniere's Disease" for the first time. Also, the dreaded "We don't know much about this disease" but that I would need Dyazide for life. The reason it was more difficult to diagnose me was my lack of vertigo. And, as the years have gone by, I have become more HOH. I am now profound right/moderate-severe left. I have been stable since taking the Dyazide, without much more loss. I have had the prejudices from hearing world: the insults, frustrations sent my way, the quizzical looks from old friends that my hearing can change in an hour. And I have felt the prejudices from the Deaf world: hearie, not life long Deaf, is not fluent ASL. I am where I am from being part of both worlds. I regret the loss of music more than the loss of regular talking conversations. I would not have become involved with the world of the Deaf/HOH without having gone through this. I too felt the deep shame and depression of losing my hearing, and being forced to adapt. Just playing the hand I was dealt, I always say.
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"Be faithful in small things because it is in them that your strength lies." ~ Mother Teresa |
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#37 (permalink) |
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Registered User
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Hi everyone...
i wonder if anyone of you ever feel like....after being deaf ( Specially a previous hearing one ), you feel that your sense become more sensitive.... ? Because i do. For instance, i can't hear, but i know that someone's knocking the door, or the phone ringing. Or when you drive vehicle, you know that someone's going to pass you by. Moreover, sometime i can tell if someone's lying or not.I don't know, maybe because i lost my hearing sense, than my other sense become more active maybe ? What do you think guys ? O by the way, is any of you can share opinion about my previous post ? About deafs legal rules for driving vehicle ? Are we still allowed to drive and have license ? I really like to know about it. Thanx all |
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#38 (permalink) |
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Premium Member
![]() Join Date: Sep 2008
Posts: 1,146
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In the US there is no law prohibiting Deaf from driving, so long as they pass the requirements for all other drivers (vision testing, behind the wheel, written test etc). Shortly after I lost my hearing I renewed my license with only the vision screening.
Years ago, before they became standard equipment, deaf were required to have dual outside mirrors. Frankly, I think I'm a safer driver now, since I'm less distracted by the cell phone, radio, chit-chat, and so forth. |
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#39 (permalink) | |
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Registered User
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I believe that, as humans, we were made to change with our circumstances. People like you and I have lost a sense we used to have, so we make up for it in other ways. A keener sense of awareness about our environment, an innate knowledge about when the energy in the room has changed from just one person to two people. It makes sense. Deaf people have been surviving and thriving for thousands of years because we were made with the ability to survive, even though we don't have all the equipment others have. I don't know, by the way, about driving...was wondering about that myself recently.
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Tell me, what is it you plan to do with your one wild and precious life? |
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#40 (permalink) |
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Registered User
Join Date: Nov 2008
Posts: 460
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You get more sensitive to vibrations when you can't hear. I can tell when someone is about to enter the room at home, because I can feel the vibrations of their feet. I know when my dog is growling because I can feel the vibrations going all the way up his lead. I think hearing people feel it too, but they don't notice because they don't need to.
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#41 (permalink) |
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Registered User
Join Date: Jan 2008
Location: So. California
Posts: 134
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Hi....If there is anyone that has late onset deafness are in the Inland Empire in So. California. I can help with some life changing peer counseling and support tips. I'm a Hard of Hearing Advocate at CODIE (Center On Deafness Inland Empire in Riverside, CA) and I also have a support group. Please refer anyone to me if they need asisstance. I, myself have lost my hearing throughout the years and had to learn a lot about myself and life changing issues that occurred because of my hearing loss. Main thing is for the person to go to someone that understands and talk about what is happening and get supportive tips they can use in their lives. A support group if a wonderful help, they want to go (some do not want to attend these).
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#42 (permalink) |
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Registered User
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I guess you could consider me hard of hearing. I've noticed for the last several years that I am constantly asking people to repeat what they say. I noticed it really bad last year at one of my horse shows. I was watching the ring steward for change of gait calls. I could not hear it over the PA. Made it very difficult.
Some days it is better than others. I know it is slipping, and I deal with it. Sometimes I get angry because I don't get all of a conversation.. or my husband gets mad at me because I don't answer when the kids are trying to talk to me. Though its hard to know where you fit in. I'm not d/Deaf. I have been taking ASL for both myself and my son. I enjoy every minute of it. Though when I try to make friends with HOH or Deaf I am shunned. (Not by all, but by most...) Though I am not willing to give up. I am sure someone out there wants a friend! lol
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~Live...Laugh...Love...~ |
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#43 (permalink) | |
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Registered User
Join Date: Jan 2008
Location: So. California
Posts: 134
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Their website is full of useful informaiton for HOH people as well and even students who need help in the classrooom. |
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#44 (permalink) | |
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Registered User
Join Date: Sep 2007
Location: Oregon
Posts: 78
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I know exactly what you mean. There are a couple of fairly new nurses that I am currently working with that seem to have changed their perspective about me since learning about my deafness. I have been told I'm too shy, then in the next breath, I'm too aggressive. I have been told I had no business working in the OR because some people think Im a 'patient saftey issue" although I have been working there for several years with out any problems until the new hires say these things about me. It is so frustrating since they just dont understand how much I work at making sure communication is open, and how much i do to not put my patients at any type of risk. ARRRGGG, sometimes I wish they could be deaf for one day to understand.
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#45 (permalink) | |
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Registered User
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__________________
Love is the force that transforms and improves the soul of the world... |
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#47 (permalink) |
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Registered User
Join Date: Mar 2009
Posts: 2
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Questions, please: 1) Does ALDA operate in local chapters and support groups or is it a national organization? 2) With SSHL and not yet knowing how to sign or lip-read, how could I participate in a support group? Thanks.
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#48 (permalink) | |
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Joe's Friend
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Here is the link to ALDA in Chicago. Good luck.
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#49 (permalink) |
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Registered User
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something is missing for me, but its tough to articulate it. I am comfortable at work, but not so in personal life. I feel like a loner all too often. Since my divorce 2 years ago- there is no such thing as going to social activities. I feel like such a loser outside of work, hence I am content spending all the time possible at the hospital. I have a sence of importance and belongingnes there.
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#50 (permalink) | |
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Emerging from the sun
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Quote:
__________________
"Be faithful in small things because it is in them that your strength lies." ~ Mother Teresa |
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#52 (permalink) |
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Premium Member
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When a thread is 'sticky', It means that the thread will be on top of above of any threads in the specific forum.
Let's think about it - It is like when you see a bulletin board at work or places, You will see these post-it notes that are there with the tacks on it for everyone to see it. Hope that helps you understand what 'sticky' means.
__________________
Isaiah 33:6 - "He will be the sure foundation for your times, a rich store of salvation and wisdom and knowledge; the fear of the Lord is the key to this treasure." |
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#53 (permalink) |
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Hm. Well, it seems that people are people whether hearing or not. d/Deaf, HOH, and hearing people all seem to have a tendency to exclude those who have abilities we don't have, or who don't have abilities we have. Not true of everyone, of course and thank God for that. It's so silly though. Not everyone can do everyone, yet humans seem to delight in punishing each other for it and then bemoaning their own loneliness even though they won't accept people who are different from them. It all goes back to the fact that it's a very good thing we ARE different...the world would be boring other wise. I think it's just as much the job of people who are hoh or d/Deaf to reach out to hearies as it is the other way 'round. Just a thought. We insist we are proud of who we are and then take offense at natural awkwardness from people who just need a little time to adjust to our unique needs. I really believe that if given the chance and the time, most people, hearie or not, will come around and work with people different then themselves.
__________________
Tell me, what is it you plan to do with your one wild and precious life? |
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#54 (permalink) | |
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Banned
Join Date: Jun 2006
Posts: 60,296
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Having said that, I will also qualify it with the statement that it is important to keep challenging yourself to try what makes you uncomfortable. It is the road to growth. |
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#56 (permalink) | |
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Banned
Join Date: Jun 2006
Posts: 60,296
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#58 (permalink) |
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Emerging from the sun
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Just curious; is there any plan to have an actual LDA group in AllDeaf, now that you have returned? We can wait until the "Welcome Back" parades are finished, if you wish. Was wondering if this is going anywhere, other than a thread/intro thing.
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"Be faithful in small things because it is in them that your strength lies." ~ Mother Teresa |
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