Adjustment to late onset deafness

Jezie

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Hi, I am new; to this site and deafness. I am 32 years old mother of 6 (although I lost my oldest daughter to SIDS). I am glad for this thread because reading it let me know I was not alone. Many people have stated pretty much where I am so I won't rehash simply put I late deafened and lost. But I am finding my way again. :)




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MonaLisa1992

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Hi, I am new; to this site and deafness. I am 32 years old mother of 6 (although I lost my oldest daughter to SIDS). I am glad for this thread because reading it let me know I was not alone. Many people have stated pretty much where I am so I won't rehash simply put I late deafened and lost. But I am finding my way again. :)




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Welcome! I'm glad you don't feel alone. I had a moment there where I felt pretty low about my hearing loss too- I think I posted about it farther back on this thread. Things get better! You can't be lost if you're on a new adventure ;)


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Jezie

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I can see that. The lost comes from the loss of the known. I love to play music and now I don't feel it. Employment is a huge struggle and I haven't found my place there and so on. Yes, it is a new adventure, but my map was dropped in the river and floated down stream ;) it sounds cranky or complaining but I truly am not; just drawing a new map with chalk on the sidewalk. Some days it rains washing it away and some days it shines and I get pretty far. I have learned to find humor in a lot of things that make me feel lost.



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glickchick

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I totally agree in that the deafness/hearlng loss makes you feel lost. I still feel that way. While communication is obviously such a challenge, i find that I miss hearing just the simple, everyday sounds of life - running water, cars whizzing by on the street, and stuff like that. While I've definitely accepted that I am now totally deaf and always will be, I do wonder if I'll ever fully get used to it.
 

Accepting524

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I am new to this board and have recently gotten my first set of ha. I have been reading all of the posts and notice that a lot of these issues are things I have gone through. The other day I was in the back of my house and my husband was in the hard. He comes in the back door and said "what's going on with the washer." I didn't hear anything. We walked to the wash room and I noticed it was making a terrible noise. I couldn't hear it from the back of the house. This was after I had already been to see the audiologist and ENT. Truth be told I knew there was a problem 8 months ago when I had a hearing test at work. Our health company came to give free eye, ear, and skin cancer exams. About two (maybe threw) weeks ago I went to a party and got completely lost in the convo. I had a near meltdown. I started to cry. It runs in the family so I'm not completely in shock. I have cousins and an aunt who went through this in their 20s/30s. I have had about a million ear infections and tubes never worked. I never really thought it would catch up with me. My sister and brother have had no issues. Looks like I'm rambling. I sometimes feel a little lost. My husband has been super supportive. We are having a baby in November. Life for the most part is good. I hate to act down and depressed but part of me feels like he can't understand what I'm feeling. If my family history is any indicator I'll be profoundly dead by 40. (My one cousin was 36 when she became profoundly deaf in both ears). So right now I have many things to be happy and grateful for but I feel sad and lost too. I must sound crazy. (Maybe it's the hormones). Much of what ya'll say is what I am feeling. Watched tv with closed caption for the first time tonight. I took my ha out when I got in the shower I didn't put them back in. It's hard to follow. The husband is sleeping. I'm actually happy I was not going back to work after the baby. I don't know that I would be able to do my job if I went deaf. I am a senior event planner for a big company and I am not sure how that would work with some of the big named high paying clientele. I guess my rant/ stream of consciousness is over. Id love to hear from anyone with similar experiences. It felt good to talk. Thanks for being my sounding board.


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tlsikes

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Hi, I'm new to the board and I fit on this thread.

I went to sleep on May 1 with hearing in both ears. When I woke up on May 2, I had pain and what felt like congestion in my right ear. I thought it was due to the cold I'd been fighting so I started taking a decongestant.

I saw my one doctor who prescribed zithromax, thinking I had a sinus infection. That made no difference. I also tried a combo of decongestant and expectorant. Still no change.

Not being able to hear out of that ear has been driving me crazy because I spend a lot of time on the phone and it's awful for me now. Finally, I made an appointment with my son's ENT and saw him on Monday.

The hearing test showed that I have hearing loss in both ears, but it's more serious in my right ear. It's an issue with the inner ear or nerve so even though he gave me a 6 day course of steroids, the ENT isn't hopeful that there will be any change.

My father had the same thing happen to him with suddenly losing his hearing and my mom is hard of hearing in both ears (with hearing aids) so I guess I should have expected this. I don't think I expected it to happen so soon.
 

KerBear

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Hi tlsikes;

Welcome to AD! I'm pretty new to posting here, too, although I've been lurking for almost a year. I'm sure you'll find people here to be very helpful and supportive.

I know what you mean about not expecting [hearing loss] to happen so soon. I had a slight hearing loss in my right ear since age 3, and was told when I was 20 that I would eventually need a HA for that ear. My left ear had normal hearing at that time. When I had my hearing tested last summer, I was told I had a moderate loss in my right ear, but also a mild loss in my left (good) ear. I had NO idea I had any hearing loss in my left ear! I had always assumed my hearing wouldn't start going downhill until I was in my 50s or 60s, but instead I got my first HA (right ear only) at the age of 40, and will probably be getting a second aid later this year if things continue on the same downward trajectory. (I've been told my hearing loss is genetic, but there is no family history of hearing loss prior to age 65 going back 3 generations.) Life throws some unexpected curve balls sometimes. But as someone from "Say What Club" reminded me, there are worse things than losing your hearing... I'm not in any way meaning to suggest that losing your hearing is trivial, though. It's pretty unnerving. But as I said earlier, you will find tonnes of support here from most of the posters!

I'm assuming you'll be getting hearing aids sometime soon? I think you'll be surprised at how well they work with the phone. While I don't use my aided ear with the phone, the few people I know with hearing aids say the direct bluetooth link from phone to hearing aids is amazing! Hearing aid technology is getting better all the time...

Anyway, welcome to AD!!!
 

tlsikes

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KerBear, thanks for the welcome!

Except for my sudden loss, our stories are kind of similar. I knew before that I had some hearing loss because it runs in my family. I thought it was mild because I wasn't terribly bothered by it. My test the other day showed me the loss in my "good" ear wasn't just mild!

You're so right that there are worse things than losing your hearing. I keep trying to tell myself that when I have moments of feeling sorry for myself. I've been struggling for the past 9 months with other health stuff, though, so this on top of it is making me say, "What else?!?"

I hope I'll be able to get HAs soon. I think if I want to keep doing my job, I need them and I'm amazed at how great the technology is these days.
 

KerBear

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tlsikes;

I understand the moments of feeling sorry for yourself. I have pity parties far too often! I can sympathize a little bit regarding your health issues as well, as I've been dealing with a few new health issues that have arisen in the last year. Many times I've found myself thinking, "Really, there's something else wrong?" I've been following the blog of a wonderfully inspiring woman who has hearing loss and a few other disabilities. Whenever I start asking "Why me?", I'm reminded of her and find strength in knowing that if she can cope - and be extremely successful in her life - then so can I.

Over the last few weeks, I've decided to try something different to help me cope with the fear of losing more hearing, and the uncertainty of the when/how/if it might happen and how/if it will affect my eventual return to the workforce once my kids are a little bit older. I'm allowing myself 10 minutes a day to "freak out". That's it. I don't get to wallow in self-pity/fear while my kids are napping, while I'm doing housework, or while I'm doing anything else. I have set aside those 10 minutes every day in which I allow myself to worry and stress as much as I want, and when that time is up, I return to "reality". This process isn't working perfectly yet, but it's definitely helping to lower my anxiety.

You say you hope you'll be able to get hearing aids soon. Are you holding out because of the prohibitive cost? HAs can be pretty expensive. Have you looked into getting some from Costco? (I'm not advertising! I have no affiliation with Costco whatsoever, but my father-in-law got his hearing aids from there for a great price, and I know a few others who have done the same.) If you have a Costco nearby, it may be worth looking into.
 

KerBear

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Hi Accepting524;

I've read your post a few times now, each time wanting to respond but not sure what to say, other than, you're in the right place when you need to share what's on your heart and mind. You weren't "rambling". You're beginning a new phase in life that is likely going to require intermittent adjustments, and it's perfectly ok to feel a little bit lost.

I'm glad your husband is so supportive, but it's true that he can't know what you're going through. I think, and this is just my opinion, that hearing loss is almost as hard on the spouse of the hearing-impaired person as it is on the person losing their hearing in some ways. My husband has admitted that he has a hard time figuring out how to talk to me some days. On paper, I have a mild hearing loss in one ear and a moderate loss in the other. But I have fluctuating hearing loss, so on some days, I have a moderate and a moderately-severe hearing loss. On those days, I find myself feeling lost a majority of the time, and my hubby (and toddlers) get confused wondering why I can't hear something today that I could hear perfectly fine yesterday. It must be hard to watch someone you love go through this...

You don't sound "crazy" when you say you have "many things to be happy and grateful for but...feel sad and lost too." You sound like someone who is learning to adjust with a new normal and someone who is starting to go through some of the stages of grieving. You're a work in progress. We all are. It's good to share what you're feeling with others who can understand what you're going through. I hope you'll find encouragement and camaraderie on this board!
 
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Shosho1

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Wows, wow. I just stumbled upon this site. I am late deafened/hoh and am also in my late 40s with 2 kids. I am more new to this form of communicating, than I think most, but I am desperate to be connected with people who "get it". Reading each post in this forum makes me want to cry. Is there really a community out there I can talk to? Get advice from and I don't have to be perfectly deaf and deaf expert? I actually have known ASL at a decent level for over 20 years, because a good friend has Menieres, so I learned as a hearing person, but I live a very hearing life that I am feeling like I am failing and drowning in, because I just can't interact, or feel safe like I used to. I've been feeling crazy, that I can't find connections. I live in the Bay Area, super liberal, queer/bi, former fat dyke and I keep finding very traditional folks in deaf world. Ok, I am going to believe I am just ranting, and not hoping for the magic keys for climbing out of this abyss... But damn, I am hopeful.


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KerBear

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Welcome, Shosho1! I hope you will be able to find the community you are seeking on this forum.

I need to vent. (Shosho, this portion isn't directed at you!) Or maybe I just need to ask people with more experience how you've dealt with gradually losing bits of your hearing? I'm feeling really stressed out lately about having hearing loss in general, but also about the idea of gradually losing more and more, especially since I don't know how far down the slope I'm going to go. I know most of you *get* this. How long does it take for people with gradual hearing loss to get comfortable telling people who've only known them as "hearing" that they are now HOH? I know it's different for everyone, but it's been a year since I was "officially" diagnosed with hearing loss, and 8 months since I got my hearing aid (I only have one; I need another but my insurance won't cover it right now because my hearing isn't "bad enough."). I thought I'd be at least somewhat ok with my new reality by now. But obviously I'm not. I'm really struggling with how to tell people I've known for years that I'm now HOH. I'm trying to be up front about it so they know why I'm asking for the occasional (or frequent, in the case of quiet talkers!) repeats. I feel like many of them look at me differently, and for certain there has been one person who seems to have stopped associating with me since I told her that I'm now slightly HOH. Does it ever get easier having to tell people that you're HOH? Or will I eventually just develop a thicker skin and not care so much about what other people think? I hope so.

My husband is wonderful, but sometimes he gets frustrated when, on a day when my eustachian tubes are acting up, he has to repeat himself several times in order for me to hear him. If my husband gets frustrated, how much more so will people who don't know me? What about meeting new people? When/if my hearing gets substantially worse, will people even want to make the effort to get to know me? I'm pretty sure I'll want to keep meeting people, no matter how hard it gets.

Ok. I'll stop the pity party now. Thanks for "listening"....
 

dogmom

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:wave:Shosho and KerBer....


I'm 42 < no kids- dogs> and also hoh and started losing my hearing maybe 6-7 years ago, so far as I know. Am told I was born with missing inner ear part though so I don't know, born very premature.
Hub is oral deaf/hoh. I learned a teeny amount of ASL and was first exposed to the Deaf community some years ago when I was in college and took a part-time Summer job at a recreational program that served elementary school kids identified as deaf/hh and also kids with disabilities such as emotional/behvaioral and ADHD. Since then I've taken several classes with Deaf teachers and gained more experience. My first year of that program there the Supervisor was CODA and throughout the time we had Deaf staff.

I happen to have a learning disability <diagnosed in college> and auditory processing problems <not formally diagnosed> so I'm used to making explanations....am also bi <out>and generally have always fallen "outside the box" for a range of reasons, always being the "only" -something- so I'm used to...things. I don't really care how people see me as hoh or whatever and for me, I pretty much am open about stuff and just come out and tell 'em. For me, it's easy in terms of my bringing it up...actually my ID'ing as bi and my LD seems much more challenging for people to "get", in my experience. Not that my explaining of those latter is harder, but that the concepts just don't seem to make their way into the person's mind, or stay there.
Anyway, also being involved in Deaf world, my experience is - you develop thicker skin.

I meet new people all the time at my job- customer service - don't work the cash registers but interact with people coming in to get dog stuff - and I meet new people when I interact with those who will provide services - car repair, bank, gas meter, whatever and I generally let them know whatever they need to know so we can interact, don't hide anything and don't worry about it. In general for whatever reason, I've had people laugh at me and make comments or be impatient when I didn't understand something, or do something differently than they do it but my experience as a child - especially a child in Special Ed - maybe prepared me a bit for being hoh.
I also have a noticeable speech difference <childhood speech and language problems> which seems to have also been affected by the hearing levels and sometimes people don't understand me.

I think it's an adjustment thing, a learning thing...and also allowing oneself to feel a certain way, is ok.
Just don't let others define you.

:hug:
 

Michman49

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Hi. I introduced myself awhile back on here and got help with some questions I had. I missed this thread somehow but just got through reading the stories and things going on that I myself am going through .

A recap on me is that I was born deaf in right ear and have been dealing with hearing issues with my left ear since 1994. I am 49 now and after a 6 year reprieve my problems back. Been to audiologist and doc. Been told I'm now at moderate to severe hearing loss. Through the years been misdiagnosed etc and went through steroid injections recently to no avail. Have a hearing aid which helps some days but never had to use it much till now. In the past my hearing always came back after week or two. This time going on three months with no changes and have ringing always. Guess that was a long recap.

Don't know if it will come back this time, stay the same or worsen. I am educating myself on my loss and how to cope with it. This sites certainly been a help. Although I dealt with this for years I never took the time to get in touch with hoh people and what to do. I just kept working. No one in my family has anything like this and I try to explain my hearing loss with the distortions, ringing etc. and hearing aid isn't much help. It's a work in progress. I have felt alone and don't know what to do if it worsens still. Some one stated this better but it's like being on an island and the rescue ship is getting further and further away.

Thanks for letting me post here. I am working on turning my ignorance around on being hoh and understanding more each day. Your stories and insights are keeping me going. Thanks

Barry
 

whatdidyousay!

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Welcome, Shosho1! I hope you will be able to find the community you are seeking on this forum.

I need to vent. (Shosho, this portion isn't directed at you!) Or maybe I just need to ask people with more experience how you've dealt with gradually losing bits of your hearing? I'm feeling really stressed out lately about having hearing loss in general, but also about the idea of gradually losing more and more, especially since I don't know how far down the slope I'm going to go. I know most of you *get* this. How long does it take for people with gradual hearing loss to get comfortable telling people who've only known them as "hearing" that they are now HOH? I know it's different for everyone, but it's been a year since I was "officially" diagnosed with hearing loss, and 8 months since I got my hearing aid (I only have one; I need another but my insurance won't cover it right now because my hearing isn't "bad enough."). I thought I'd be at least somewhat ok with my new reality by now. But obviously I'm not. I'm really struggling with how to tell people I've known for years that I'm now HOH. I'm trying to be up front about it so they know why I'm asking for the occasional (or frequent, in the case of quiet talkers!) repeats. I feel like many of them look at me differently, and for certain there has been one person who seems to have stopped associating with me since I told her that I'm now slightly HOH. Does it ever get easier having to tell people that you're HOH? Or will I eventually just develop a thicker skin and not care so much about what other people think? I hope so.

My husband is wonderful, but sometimes he gets frustrated when, on a day when my eustachian tubes are acting up, he has to repeat himself several times in order for me to hear him. If my husband gets frustrated, how much more so will people who don't know me? What about meeting new people? When/if my hearing gets substantially worse, will people even want to make the effort to get to know me? I'm pretty sure I'll want to keep meeting people, no matter how hard it gets.

Ok. I'll stop the pity party now. Thanks for "listening"....

You should feel safe and comfortable telling your friends right away that you're losing your hearing . A real friend will be supported and understanding and not mind having to repeat their self . I hate to say this but you'll find out who your feel good friends are when do tell them you're losing your hearing.
Welcome !
 

Lau2046

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Does it ever get easier having to tell people that you're HOH?

Nothing about hearing loss is easy but you can change the way you react to things. Remind yourself that this is not your fault. It happens to everyone at some point - some are born with this and for others it happens sooner than later. I was born bilateral moderate to severely deaf and I'm now at moderate slopping to severe and severe slopping to profound. The best advice I can offer is to be your best advocate. If you don't understand someone, remind them in a nice way that your hearing is not what it was and they need to change how they communicate with you. If your husband/wife/friend gets frustrated, tell them to ask you again when they've had a chance to calm down....

Laura
 

Angel1989

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For me one of the hardest things to get through to someone is, yes I can speak but I can't hear a thing. Being able to speak does not make me less deaf.

I will tell them, I am deaf, speak slow so I can read your lips. Once they hear my voice it all goes out the window.

I ran into an old acquaintance who is a Nurse Practitioner, I told her I am completely deaf from being sick three years ago. She kind of laughed and said "no your not, your voice is fine". OMG....I said "I lost my hearing...not my voice".
 

KerBear

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I ran into an old acquaintance who is a Nurse Practitioner, I told her I am completely deaf from being sick three years ago. She kind of laughed and said "no your not, your voice is fine". OMG....I said "I lost my hearing...not my voice".

And that about sums it up!!!! Grrrr. I'm a Nurse Practitioner, or at least, I was until I let my license lapse in order to raise my children. The first thing my former colleague, who is also an NP, said when she found out I was getting one hearing aid was, "Will you still be able to work?" Ummmm....yes... I haven't suddenly become stupid, I've become HOH!!! I'm assuming that when the time comes for me to return to work, I'll still be able to work even with two hearing aids! Sure, I'll likely need some modifications to the equipment I use depending on the severity of my hearing loss at that time, but I still plan to return to my former career at some point once my little people are older.

I think this is a huge part of what makes me nervous about telling others that I'm becoming HOH. It seems that people immediately assume that you've lost your brain, not just your hearing! Anyway, such is life. I realize that the vast majority of people out there are ignorant (in the purest sense of the word) regarding hearing impairments and deafness. I can see that one of my roles will now be to provide education to others. Thankfully, educating others about health issues comes somewhat naturally to me.

An aside...I attend a mom's morning out group every Wednesday morning. There is one "older" woman who attends the group; she no longer has young children like the rest of us. She's obviously been having trouble hearing the videos that we're watching because she keeps asking the group's leader to turn the videos up, which is interesting because I can hear the videos fine without my hearing aid in (I forgot it one day). Anyway, for the last few weeks she's been joking about getting her "old person hearing aid". I haven't said anything yet because not everyone in the group knows that I have one, even though I have been wearing my hair up a lot lately, and I have told a few people in the group that I have one. I really think I'm going to talk to this lady this week to let her know that having a hearing aid isn't really that bad;) At very least, I'm going to recommend that she get her hearing checked.

I also have another friend who recently disclosed that she thinks she is experiencing hearing loss in one ear due to TMJ, but she's afraid to get tested because she won't wear a hearing aid even if she needs one! Prior to that conversation, she had no idea I have a HA, but I promptly disclosed that to her, to which she then said, "I didn't realize you're deaf!" She really didn't realize that there are degrees of hearing loss, which I find strange, because I've known that since I was in junior high... Anyway, she and I had a good laugh about her ignorance.

Lau2046, I know you're right about needing to learn to advocate for myself! That's just a very new role for me. I've always been told that I advocate well for my patients' needs, but I've never been good at asking for what I need. I guess I'll be learning this soon enough;) Growth is never a bad thing.
 

Angel1989

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You know I had no clue about deafness prior to my hearing loss. I lost my hearing overnight no warning. People came into the pharmacy to buy hearing aid batteries all the time but that was the extent of it. I do not know another deaf person. We go to the very busy mall and I have only ever seen one person signing. My primary care doctor, I am her only deaf patient. I just got my hair done at a very busy salon, I asked and I am their only deaf customer. SO....I try my best to not to get upset about peoples reaction.

I just sat for 2+ hours getting my hair done. Can't talk to the girl and I couldn't wear my glasses to see to play with my phone etc. Talk about a snooze fest!! HAHA
 
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glickchick

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Wow, I can totally relate to this! This is one of the reasons I have gone basically voice-off. It avoids this situation entirely. Yeah, relying on pen/paper or text messaging isn't easy, but it works for me.

For me one of the hardest things to get through to someone is, yes I can speak but I can't hear a thing. Being able to speak does not make me less deaf.

I will tell them, I am deaf, speak slow so I can read your lips. Once they hear my voice it all goes out the window.

I ran into an old acquaintance who is a Nurse Practitioner, I told her I am completely deaf from being sick three years ago. She kind of laughed and said "no your not, your voice is fine". OMG....I said "I lost my hearing...not my voice".
 
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