Help a newbie adjust, please

[songbird]

Hi all. I'm 32 years old, and I just had my first audiogram yesterday. I'm in shock. I've been diagnosed with lupus for about 10 years. I know a lot about that condition. I never knew that so many of the drugs I depend on could cause me to lose my hearing. I've only been especially aware of having to do things like read lips, use captions, ask for things to be repeated etc for a few weeks, but my husband insists the loss has been quite noticeable for months or longer.

Anyway, my audiologist told me I had moderate hearing loss in both ears. She told me that about half my hearing in my right ear was gone , perhaps 40% gone in my left. (I got a copy of my audiogram but I really have no idea how to read it. She did explain that, but went over it so fast I didn't retain a lot.) I have lost higher frequencies, not lower ones. Audiologist recommended 2 RIC HAs, which I purchased. I should be fitted for them later this week.

I'm sad. I'm angry. I'm frightened. I'm not against using HAs to get some of my hearing back. I've lived with glasses all my life, and this is just glasses for my ears. At the same time, I feel as if I have lost something tangible. I don't want to talk to any of my friends about this because I am afraid of how they will react. What can I do to help myself adjust? Are there books I could read? Videos I could watch? Would it be appropriate to pick back up some of the ASL I used to know?

[Don]

Originally Posted by songbird

Hi all. I'm 32 years old, and I just had my first audiogram yesterday. I'm in shock. I've been diagnosed with lupus for about 10 years. I know a lot about that condition. I never knew that so many of the drugs I depend on could cause me to lose my hearing. I've only been especially aware of having to do things like read lips, use captions, ask for things to be repeated etc for a few weeks, but my husband insists the loss has been quite noticeable for months or longer.

Anyway, my audiologist told me I had moderate hearing loss in both ears. She told me that about half my hearing in my right ear was gone , perhaps 40% gone in my left. (I got a copy of my audiogram but I really have no idea how to read it. She did explain that, but went over it so fast I didn't retain a lot.) I have lost higher frequencies, not lower ones. Audiologist recommended 2 RIC HAs, which I purchased. I should be fitted for them later this week.

I'm sad. I'm angry. I'm frightened. I'm not against using HAs to get some of my hearing back. I've lived with glasses all my life, and this is just glasses for my ears. At the same time, I feel as if I have lost something tangible. I don't want to talk to any of my friends about this because I am afraid of how they will react. What can I do to help myself adjust? Are there books I could read? Videos I could watch? Would it be appropriate to pick back up some of the ASL I used to know?

Please post your audiogram results. The main part is a graph/chart of your hearing loss at several points, but also, there should be a word recognition score. Mine was abbreviated WRS. For WRS there will be a Db number and a %. So to interpret that, it might say, for example, at 65 Db, you understood 92% in the left and 94% in the right. It will not be written out like that but probably just numbers in some boxes and you will have to figure out the headings for the rows and columns.

For the bigger chart of your hearing loss, find where the row (decibel of loss) and the column (sound frequency or pitch) intersect. On my list below, at 1k or 1000 Hz, the line crossed at 30 for the left and 40 for the right.

I wouldn't put much faith in the percent lost he told you. They don't really measure it that way. It sounds like your loss would be in a good range for help from hearing aids, but, it is not like putting on glasses and being able to see perfectly well. Hearing aids help a lot and will keep you from being isolated because of your hearing. It takes some adjustment sessions and some time for your brain to adjust.

I'm with you on your reaction to the loss of some hearing. There definitely is a grieving process and it's not easy at first, but, after a while, it will be the new normal. I would definitely talk to friends about it. I grossly overestimated other people's interest in my hearing. It was a big deal to me but most people just said, "really, yeah, you needed those, where are we going for lunch".

Nope, no need for ASL.

Here is a good article that has been posted here before.
http://www.hearinglosshelp.com/artic...aidfriends.htm

[seb]

Don't be afraid to talk to your friends about your hearing loss, they already know and will be supportive of you doing something to help hear better. Being sad, angry and frightened are all part of the process but in time you will come to accept your hearing loss as another part of living. I've had hearing loss my whole life and was told in the 4th grade I would eventually need HA and I went decades not knowing how much I was missing until I tried on my sisters HA and could not believe what I was missing. Since I began wearing HA I have found all my friends to be supportive and a several have followed my lead and got HA themselves. Another thing I have found is the only people that notice you wear HA is little kids, other HA wearers and people who are looking at getting HA and want to know how you like wearing HA and if you liked who you went to. As for your lupus, talk to your doctor and make sure your at the lowest dose of your medication to keep it at bay and slow down its affects on your hearing. Good luck!

[songbird]

Thanks for your help! As best I understand it from what you've said, my audiogram looks like this:

55 dB HL- 70% (listed for both left and right ears)
binaural 55 dB HL- 90%

At 250 Hz, my left ear line starts at 40 and my right ear line at 50. The left ear line starts sloping down between 500 and 1000 Hz--I'm at about 45 at 1000 Hz, then back up to 40 at 2000 Hz (there's a "sh" right next to the x at this point.) Somewhere around 3000 Hz it goes back down to 45 or so, and back up to 40 at 4000 Hz and beyond. Whew!

As I've said, right ear starts at 50 at 2000 Hz and is pretty much a straight line till you get to 3000 Hz, at which point I go down to 55 or so.

There's also a bar here at the bottom that reads, "Importance to speech intelligibility", and my audiologist has circled 22% on the left side of the line.

I hope all this is helpful to someone! It makes a little more sense to me now, but I still wish all those numbers and letters meant more to me.

[Don]

Originally Posted by songbird

Thanks for your help! As best I understand it from what you've said, my audiogram looks like this:

55 dB HL- 70% (listed for both left and right ears)
binaural 55 dB HL- 90%

At 250 Hz, my left ear line starts at 40 and my right ear line at 50. The left ear line starts sloping down between 500 and 1000 Hz--I'm at about 45 at 1000 Hz, then back up to 40 at 2000 Hz (there's a "sh" right next to the x at this point.) Somewhere around 3000 Hz it goes back down to 45 or so, and back up to 40 at 4000 Hz and beyond. Whew!

As I've said, right ear starts at 50 at 2000 Hz and is pretty much a straight line till you get to 3000 Hz, at which point I go down to 55 or so.

There's also a bar here at the bottom that reads, "Importance to speech intelligibility", and my audiologist has circled 22% on the left side of the line.

I hope all this is helpful to someone! It makes a little more sense to me now, but I still wish all those numbers and letters meant more to me.

So if you listed it, it would be something like this?

Freq L R
0250 40 50
0500 40 50
1000 45 50
2000 40 50
3000 45 55
4000 40 55
6000 40 55

Well, for your word recognition, I think each ear is recognizing correctly 70% of the list of words spoken, at 55Db. Then, when using both ears (binaural) word recognition goes up to 90% at 55Db.

[songbird]

That's about right, yes. Is that a typical pattern? (Or is there any such thing?)

[lyork]

Adjusting to hearing aids is difficult. I've had my hearing damaged in two separate noise related incidents. I still get mad, frustrated, and even depressed at times knowing my hearing loss could of been prevented, but things happen so quick.

I purchased my first set of hearing aids much like you--my hearing was assessed and I was in shock at how much I had lost. I purchased aids in hopes of regaining my hearing and getting some relief from this darn tinnitus. Not one of my better purchases, those aids ended up sitting for four years because I hated how they made everything sound. Truth was, I personally wasn't ready to wear aids, you have to be comfortable with the idea of wearing aids. Getting support from family and friends means a lot.

I am starting to have problems with my speech as I can't hear my "S's" very well without my aids, (that goes for hearing other people as well). So I'm mentally ready to finally wear them, but at age 46 I still think I have been robbed of something and don't wear my aids everyday.

I've started taking steps to prepare myself and those around me for wearing full time aids. I'm finally telling people that my hearing has reached a point that I NEED aids. When I ask someone to repeat themselves, I use it as an opportunity to tell them about my needs. The girl that cuts my hair had wondered for a while about my hearing, people that I call on, but now that they know, they no longer think I'm not paying attention, they simply know I have difficulty understanding them.

[seb]

I've had a couple of friends of our family, both females that I just could not understand or even hear what they were saying most the time, but once I told them I was getting HA they both said they had thought I was ignoring them because I rarely responded to what they were saying to me and now that they new the reason, THEY felt better because they now new it wasn't that I didn't care what they were saying it was simply that I couldn't hear them. Since I have had the hearing aids I don't have anywhere near the problems hearing them and I learned that I was hurting peoples feelings by ignoring them or not responding to what they were saying when I couldn't hear them or understand what they had said and I probably should of told them I was having problems hearing their voice rather than say nothing.

[ComaCalm]

*free hugs*
It was a shock to me to learn that I did have moderate hearing loss, and lack of hearing has been something that's been present my whole life. I can't imagine what it must be like for someone who was used to having perfect hearing! *more hugs*

[corey]

my speech hasn't suffered. I can easily fool people in to thinking I do not have a hearing loss. Its practice with a patient partner willing to repeat the word back to you and correct your mistakes when you say it wrong. Then there is the cover the mouth with piece of paper to teach word recognition and keep going back and forth till you say it right.

You can even make a game out of it, by having your partner put ear plugs in and and do it to them. It helps them to understand what its like for you.

Working together strengthens the bond between the two of you.

Personally I felt closer to my teachers, that did this with me, than my own mother.

There will be times, your glad, you don't have the hearing, like in noisy environments and such. just turn the aids off hee hee.
And you can do it without looking obvious, like sticking your fingers in your ears so you don't have to hear.

I miss my hearing, never cried about loosing it. What made me cry was the bullying, not being accepted, fathers ignorance and not wanting to accept that I will never have normal hearing, even after aids. Mom pushing me to my teachers when, I had problems about it all.

Good news songbird is you managed to skip the age its hardest to adjust in, being young with a loss.

Having hearing and then loosing it is hardest to deal with because you reminiscence on the past ability. To help cope is best, to try to forget the times you could hear normally, its not your life anymore(this is when your in your head with your own thoughts). Just focus on today and forward. Its fine to talk about the past, to help others understand your struggles. Talking about it to others, even strangers can be therapeutic. As long as said people don't decide to bash you on personal level.

If you can accept your loss, then a lot of your frustration will subside like anger sad etc.

As you said "HA just like glasses for your ears". Actually good way to cope for yourself. especially when you have accepted the glasses for your eyes.

Another way to look at it its just part of growing older.

I don't think I have meet any old folks with perfect hearing......

Following quote to put into perspective from http://research.gallaudet.edu/Demographics/deaf-US.php

• About 2 to 4 of every 1,000 people in the United States are "functionally deaf," though more than half became deaf relatively late in life; fewer than 1 out of every 1,000 people in the United States became deaf before 18 years of age.
• However, if people with a severe hearing impairment are included with those who are deaf, then the number is 4 to 10 times higher. That is, anywhere from 9 to 22 out of every 1,000 people have a severe hearing impairment or are deaf. Again, at least half of these people reported their hearing loss after 64 years of age.
• Finally, if everyone who has any kind of "trouble" with their hearing is included then anywhere from 37 to 140 out of every 1,000 people in the United States have some kind of hearing loss, with a large share being at least 65 years old.

there is roughly 350 million people in usa Point is that is A LOT OF PEOPLE with hearing issues.


your not alone


Corey


PS reason people don't realize "just how many" is people don't want other to know they have a hearing issue.


I survived 31+ years bit messed up, but still kicking.
you'll survive