How does hearing loss change you?

I am an hearing impaired Muggle born with the loss but misdiagnosed until 16 as Asphasic and Mentelly challenged. I have fought many battles and won in spite of professional s before and after correct diagnosis. Stating I will never graduate from college or have a good job. I did both ... graduated from San Francisco state in Psy ... and had some self made jobs - in the hearing world and profffesionsls were shocked ( Audiologists/ proffessors.. etc. . More folks in my life say I cannot and in spite a lot of self esteem issues and lack of confidence that I fight all the time- I do / can do in spite of them.
Before cellphones; t coils allowed me to be more okay in the hearing world. Nowadays; no- although the InnoCaption helps- not enough. I have taught Audiologists and other folks that t coils acts like an fm receiver for me- better to hear tv if there is no captioning availabl or music iPod . The loop in some train stations and t coil have smooth things out for me. My big issue in life is to make medical offices more in time to hearing impaired. MuLe n Care has done some good work in that but they still need some work. They still call and I messaged the office stating no. They will work with me ... with reminders sometimes.
We need 911 to be text friendly. Not yet in most states and that’s is not good. Scary
My hearing loss has worsened and it is making things more difficult. But critters and books helps a lot.
Sorry for long bit.

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I tried not to let things get me down as it is getting harder. It does not help that I am an depressive Deefie( misspell on purpose- having some hearing) There was a science report how important it is to be out there - that hearing issues needs to be resolved or serious consequences will happen . Someday better coverage for hearing aids in Medicare , etc

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Thank you all for your responses and feedback. Understand the ups and downs of hearing loss & tinnitus that doesn't go away even with the fancy programs that I have, biofeedback and sound devices that I tried...it's a fact of life that I will live with these two misfunctionings of the brain until I die. My past history has multiple reasons for these results and so I will just live with them and march on in life. But, as I said, I will learn to live with them by using different ways to augment my life around them. AND I will work with others to help me do that.
I would love to attend the next HLAA National Convention in Rochester NY but my husband and I just moved to FL from WI. A BIG move that has me very busy just trying to get myself use to a new neighborhood. My husband is helping me but after living in one place for some 45 years....its an adjustment.
My HLAA Work in WI has been completed and now my work in FL is just beginning. But first my house and doctors and getting me set up for the next chapter in my life. We live in a 55+ community where there are many hard of hearing people - so guess what? There will be plenty to do. But first, one step at a time.
One thing I can say, is if there is anything you can do for yourself - that is learn about your self and your health. What type of hearing loss do you have? Do you have noise in your head (tinnitus)? Do you have difficulty with hearing sounds that get louder and louder called hypercusis like I do? Do you have a balance problem or vertigo, like I do? When does that happen? Have you had physical therapy? What type of testing have your had for your hearing loss? Have your seen both a ENT (ear, nose and throat) doctor and an audiologist for a complete checkup? Do you have them on a regular basis?

Are you treating your hearing loss like a yearly or even biannual physical since this should be something done on a regular basis? If not, then this might be one reason our health care providers neglect to address these issues. I know, because I am a retired RN and this was NOT taught in our nursing schools.
I learned it on my own. Our HLAA website provides plenty of information to help ground you in plain and simple information that can help to give you ammunition to make sure you are ready for your appointments, urgent care visits, hospital visits, emergency room visits or anything in between. Talking to your healthcare providers about your hearing loss is just like talking to your neighbors or family. THEY need to know since they are taking care of you.
They need to know how to communicate with you - what works and what doesn't work.
I have a letter that I give to my doctors that specifically spells out what I expect of me and what I expect of them when I see them. They always make sure to follow and work with me since I am a high-risk patient. You tell them that...my life is in their hands. Especially in surgery and I have had my share.
https://www.hearingloss.org/
Last item....Medicare and coverage issues. I write to all of my legislators and governors and even the President. I have written to Congress and other governing bodies about healthcare issues that directly and indirectly affect you and I. I have not yet been called to sit before any of the panels but I have had my written materials submitted in Washington DC. I have been working on the issue of having Medicare cover Hearing aids and at this time - it will not be done for various reasons. The closest we have right now is the FDA approved for Over the Counter Hearing Aids Act that gets it nearer to what we could have but not quite. While it's better than nothing - its not exactly what we need. There are so many other 'big issue' bill on the table that the HA Act is usually gathering dust. http://www.hearingreview.com/2017/08/president-trump-signs-otc-hearing-aid-legislation-law/
I had been working with Honorable Sensenbrenner to get a bill passed from both houses to pay for HAs every 5 years and each year it never got passed the Senate. We worked on it for four years. And now I am in FL. So...Who knows.

That's all for now. Everyone can join our HLAA Organization - it's a terrific place to find out what I have been giving you - find Chapters or people who share the same insights, thoughts, supporting arms and hugs and know there may not be answers but are willing to 'listen' and work alongside you as others have for me. It took me 7 years to accept my hearing loss and to agree that I needed help - support and to speak up about it. I was angry but soon found that I could turn that around and do something about it. It didn't happen over night as most things don't but in the end - word does get around in mysterious ways. I planted the seed and it grew... and you all are going to do the same. IT DOES WORK.

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@bookysue I wear hearing aids but also have tinnitus the tinnitus bothers me more then heading clearly but I have Phonek and can adjust them to outside noises .Good luck in your quest

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Thank you all for your responses and feedback. Understand the ups and downs of hearing loss & tinnitus that doesn't go away even with the fancy programs that I have, biofeedback and sound devices that I tried...it's a fact of life that I will live with these two misfunctionings of the brain until I die. My past history has multiple reasons for these results and so I will just live with them and march on in life. But, as I said, I will learn to live with them by using different ways to augment my life around them. AND I will work with others to help me do that.
I would love to attend the next HLAA National Convention in Rochester NY but my husband and I just moved to FL from WI. A BIG move that has me very busy just trying to get myself use to a new neighborhood. My husband is helping me but after living in one place for some 45 years....its an adjustment.
My HLAA Work in WI has been completed and now my work in FL is just beginning. But first my house and doctors and getting me set up for the next chapter in my life. We live in a 55+ community where there are many hard of hearing people - so guess what? There will be plenty to do. But first, one step at a time.
One thing I can say, is if there is anything you can do for yourself - that is learn about your self and your health. What type of hearing loss do you have? Do you have noise in your head (tinnitus)? Do you have difficulty with hearing sounds that get louder and louder called hypercusis like I do? Do you have a balance problem or vertigo, like I do? When does that happen? Have you had physical therapy? What type of testing have your had for your hearing loss? Have your seen both a ENT (ear, nose and throat) doctor and an audiologist for a complete checkup? Do you have them on a regular basis?

Are you treating your hearing loss like a yearly or even biannual physical since this should be something done on a regular basis? If not, then this might be one reason our health care providers neglect to address these issues. I know, because I am a retired RN and this was NOT taught in our nursing schools.
I learned it on my own. Our HLAA website provides plenty of information to help ground you in plain and simple information that can help to give you ammunition to make sure you are ready for your appointments, urgent care visits, hospital visits, emergency room visits or anything in between. Talking to your healthcare providers about your hearing loss is just like talking to your neighbors or family. THEY need to know since they are taking care of you.
They need to know how to communicate with you - what works and what doesn't work.
I have a letter that I give to my doctors that specifically spells out what I expect of me and what I expect of them when I see them. They always make sure to follow and work with me since I am a high-risk patient. You tell them that...my life is in their hands. Especially in surgery and I have had my share.
https://www.hearingloss.org/
Last item....Medicare and coverage issues. I write to all of my legislators and governors and even the President. I have written to Congress and other governing bodies about healthcare issues that directly and indirectly affect you and I. I have not yet been called to sit before any of the panels but I have had my written materials submitted in Washington DC. I have been working on the issue of having Medicare cover Hearing aids and at this time - it will not be done for various reasons. The closest we have right now is the FDA approved for Over the Counter Hearing Aids Act that gets it nearer to what we could have but not quite. While it's better than nothing - its not exactly what we need. There are so many other 'big issue' bill on the table that the HA Act is usually gathering dust. http://www.hearingreview.com/2017/08/president-trump-signs-otc-hearing-aid-legislation-law/
I had been working with Honorable Sensenbrenner to get a bill passed from both houses to pay for HAs every 5 years and each year it never got passed the Senate. We worked on it for four years. And now I am in FL. So...Who knows.

That's all for now. Everyone can join our HLAA Organization - it's a terrific place to find out what I have been giving you - find Chapters or people who share the same insights, thoughts, supporting arms and hugs and know there may not be answers but are willing to 'listen' and work alongside you as others have for me. It took me 7 years to accept my hearing loss and to agree that I needed help - support and to speak up about it. I was angry but soon found that I could turn that around and do something about it. It didn't happen over night as most things don't but in the end - word does get around in mysterious ways. I planted the seed and it grew... and you all are going to do the same. IT DOES WORK.

Jump to this post

Weird a number of folks including myself. Mind you, I was born with this; always took aids out to read in quiwt( drive audiologist nuts- says it’s a no no- I do not like no no’s) never a consequence until the last few years. I now have “tin.... and for me it is resolved by keeping aids in. Still do not... FYI. See if that helps- there is more success with tin. Help - please check online as much as possible - always in any issue be as information gathering on your own on any issue . It saved my life last year.

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