View Full Version : Need to vent about hearing aid....

07-14-2012, 09:20 AM
Sorry - you guys get my rant. :p

I know I am lucky in so many ways, and I try to stay positive, but sometimes stuff gets ya down, you know?

So my Lupus ate my right ear back in April - went mostly deaf over there. It's been a couple months of prednisone (today is my first day on ZERO - and man, am I ever feeling the withdrawal!!!!), ramping up onto 25mg weekly of Mtx, etc.

Everybody including my docs keep saying how brave I have been, how well I am handling it, etc....and I do try to keep things in perspective. It could have been my kidneys, or my liver, or my lungs....I don't like losing my hearing, but really it's not that bad in the larger scheme of things. I am still able to function pretty well, go places, work part time, hang out with my family - it's just an inconvenience.

But I think some of my optimism has hinged on this idea that "Oh, I can just get a hearing aid...". Somehow I guss I had in my head that it would make things "normal" again.

Well it DOESN'T. It doesn't replace normal hearing. It's expensive and not entirely comfortable (not bad, and I know I will get used to it, but it does make my ear a bit sore) and I am so afraid I will lose it or break it. And it sounds like I have a tin-can speaker on that side of my head. It's a high-end aid and it's about as good as they get, but it's still kinda lousy, so there it is.

I dunno. Somehow the disappointment with this hearing aid has brought all the emotion and fear I guess I have been holding back crashing down around me. I'm okay, really - just down about the whole thing. I guess it's a delayed reaction. My symptoms were not horrible up to now, but something about this whole experience and now being on the Mtx has driven home to me that I really do have some scary diseases (I have Sjogren's and APS too) and they can do some really bad (shizzle) to me.

Anyway - thanks for reading. It helps to "get it out".

07-14-2012, 01:52 PM
I "hear" ya (sorry, really *bad* joke). I had issues just a little over 2 years ago, where I got periods of vertigo, along with constantly dizzy that varied in intensity. It was my ears, and that definitely worried me. My F-I-L and his brother both have hearing aids, and it's a wonder they aren't insane, what with them things going "TWEEEEE!" in their ears half the time. They both will take them out for most of the day, and only put them in when they "need" them. Ray says that he can hear Aunt Gertie across the room, whispering secrets to her niece, but he can't hear a normal conversation in front of him, because of all that background noise from sources like Aunt Gertie... tic

Vent anytime ya like, btw...

07-14-2012, 10:03 PM
Hey Sleepy,
I "hear ya" too! I was diagnosed with Meniere's disease long before the AI stuff, although the rheumy later called it Autoimmune Inner Ear Disorder.
I've lost 60% in the right ear and 30% in the left. I was checked for a digital hearing aid a while back, but I turned it down when I found out how much it would cost and that the insurance would pay nothing on it.
I've learned to compensate. I always sit in the middle of the table at meetings and social functions. To make things worse, my Spasmodic Dysphonia makes my voice very weak, so I struggle to hear others and to make myself heard by them - no fun! My in-home electrical engineer has rigged a speaker with a volume control next to my favorite seat so that I can hear the TV, stereo, etc. He also put one in the kitchen so that I can hear from there.
When I was still teaching, I played it to the hilt! A boy would come up to my desk and mumble a question. Me: "Say it again, louder!" Boy (still mumbling): "Can I go to the restroom?" Me: "Repeat that in my good ear, please!" Boy (shouting so that the class hears him): "Can I go to the restroom?"
Me: "Potty? Oh, sure - take the pass." The boys were mortified and stopped asking to go in my class - LOL.
Do you notice that men and boys are more difficult to hear? Jeff says that it's because I've lost the low frequencies.
Hang in there, my friend. We'll make it, one way or another.
Feel free to contact me when you need to vent.

07-15-2012, 01:39 AM
.....Somehow the disappointment with this hearing aid has brought all the emotion and fear I guess I have been holding back crashing down around me......

i understand. we hold it together so well on the big things... but loose it totally on little things.

venting is good for us.
i hope you get used to it.
i am looking like needing one too.

07-15-2012, 09:25 AM
I forgot to ask you there Sleepy, if you have balance issues with your hearing loss? The balance is in the middle ear, and depending upon the damage done, might influence what they can do for you. Like Marla, they said my ears' issue is Meniere's, which comes in stages usually, with damage taking place over a period of time, and it takes the low-end of the audio spectrum and your balance (natural aging take the upper frequencies). A person can be "re-trained" to accept the unbalanced as the new "balanced" attitude. Strange but true. Is your hearing damage from damage to the drum itself, or the nerves to the brain, or something in the middle? My insurance covers an implant in the ear, but NOT hearing aids. Strange, eh?...

07-15-2012, 10:25 AM
Thank you, all - it really helps to vent to people who understand, even if you don't have the same specific issue, you understand the process.

I have not had balance issues - I did have a little bit of dizziness, just when I got up in the mornings, right at the beginning - but it went away pretty quickly. They're saying it's NOT Meniere's, partly because there was so little vestibular involvement (thank goodness!!!!). Or maybe I just got through them quickly because I spend so much time horseback, which is excellent therapy for balance issues. I rode a lot right after it happened, just because I was so scared, and horses are the best medicine for me. It's the only place I ever feel totally whole and healthy; borrowing those big, strong, sleek bodies to carry me around. :-)

They did MRI's and CT scans and there was inflammation in the middle/inner ear (primarily inner), but it was non-specific and really told them nothing.

I lost the hearing literally in about 2 seconds one morning...it improved a little bit with steroids, but has been stable for about 8 weeks, so this is probably where it's going to stay. I can hear low frequencies quite well - I have almost no problems hearing my friend's husband, for instance - who has a loud, booming bass voice - but I can't hear women. On the higher frequencies, I am in the "severe-to-profoundly deaf" range. Word recognition is also pretty low. On the plus side, when the birds start making a racket at 4am these days, I can just roll onto my "good ear" and go back to sleep.

I am adjusting to the hearing aid. I think my brain is starting to build new pathways and compensate for the weirdness of it. They said that would happen. I still hate it, but I guess I will adjust.

There is some promising research in the pipeline using stem cells to heal this sort of thing...maybe in 5-10 years they can fix it, I dunno.

In the meantime, it's a good excuse to wear my cowboy hats a bit more, outside of work...it needs to be protected from rain and sun, so there ya go... ;-)

Our insurance is pretty good and will pay some of it...the company also gives us an HRA account to pay some more, and the rest will go on credit cards. And if I really hate it so much I feel like it's not worth the money, by state law I have 30 days to return it for a full refund...up to 90 days with my audiologist's signature (which she will happily give me - she's wonderful!). It's a big investment, but not being able to hear in my line of work is a safety issue - its NOT GOOD when you have 1,200lb. animals sneaking up on you and you can't tell they're there!!! :-P

07-15-2012, 02:15 PM
My daughter is so tired of hearing me say "what?" because I can't hear a thing anymore. I understand exactly how you feel about staying strong and then losing it over what, in the scheme of things, seems to be nothing. It isn't nothing though. It is our life. It is how we live our life. Come here to vent. We love you and we do understand.