Let’s talk a little about hearing.
What? Okay, let’s not actually “talk”, let’s type a bit shall we. Ah, that’s better, I can understand this much better.
Recently I saw the Audiologist and had my hearing aid adjusted. By recently, I mean 2 -3 weeks ago. I was amazed. I was hearing things I didn’t know I’d been missing. For days I kept asking Stuart, “What’s that noise?” I do believe I was driving him crazy. He kept having to think, what noise? then he’d realize, oh, she heard the truck outside, or the plane over head…I hadn’t been hearing these things.
Then my hearing started to drop. Just like my left ear did this past summer. It started sounding like a busted speaker. Things didn’t just get quieter like it originally did when I lost the majority of the hearing in my right ear. In my right ear, after each Meniere’s attack I simply didn’t get all my hearing back, things got duller, softer. This is different. Things sound tinny. Broken. Today it’s a bit better, but it’s still there. For some reason, my left ear’s nerve was damaged. Dr. Kaylie said it’s not that uncommon with Meniere’s patients. He said the way I was losing my hearing in my right is more right is more common, but it’s not completely uncommon for it to happen like the left. My worry is, the left ear’s hearing dropped so suddenly. It fluctuated a bit for 3 months, then it didn’t come back.
I just tried to watch something on Netflix. I didn’t realize it didn’t have subtitles, but since I had my hearing aid adjusted if I listened with my iCom (it puts the sound right in my hearing aid) I’ve been able to watch some things without subtitles. This show started, I could not hear anything. I checked the volume on my computer, it was all the way up on the computer and on the site. I could only hear tiny little squeaks. I would not have thought it was anything if I wasn’t trying to hear something.
It bother’s me so much that Netflix has so very many movies and shows that are not subtitled!!! It’s ridiculous. They have a list of some they do have (it is not inclusive) and there is no way to sort it by genre or anything worth while. You can sort it by title, year, rating, and how many stars it got. Big deal. I’m looking for a Sci Fi movie…help me out here. Geez. We usually have to order discs because more discs have subtitles. Ummmm, if the discs have subtitles why aren’t they available on streaming? Really. Do you realize the market you are missing?? OK. Off Soap Box.
My worry about the hearing loss.
I know I will need a cochlear implant. I really don’t want to be completely deaf this late in life. But will they go ahead and do it with everything else going on? Or will they need to get this all settled first? What if I completely lose my hearing in just a few short months? Or less? (I know I’m looking on the dark side, I’m just looking at the worst case scenario, and remember I went through this last year. And right now I can barely hear!) So, tomorrow we are going to call the audiologist and make an appointment for a hearing test. So I can be armed when I talk to Dr. Kaylie. So I can ask him, if I need a cochlear implant soon, will we need to wait until the intracranial hypertension is under control first? Heck, couldn’t another hole in my head be a good thing? cause a little leak in there doc, just a slow leak…yeah….then I won’t need the shunt. hahaha
Does anyone out there run a fever at night? Or know why you might? I had all the test run recently…autoimmune, inflammatory…ect. all perfect. Even my fatty liver is not fatty. It has fat on it, but the liver itself is not fatty. Great news. No autoimmune markers….so yes, I am allergic to wheat, and intolerant to gluten, but I do not have Celiac. *sticking my tongue out at a certain doctor* Why am I swollen every morning? I had that answered by one of you lovely friends. Bed bound people retain a lot of water. So I’m trying hard to move more, but not move so much that my pressure gets all raised and I get a spiked headache. I’ve also cut way back on the salt.
Anyone else out there have hearing troubles? I know you are out there….do you think you will ever have to get a cochlear implant?
Picnic with Ants 
I just want to cry, ok, I am crying. Because I just can’t stand the amount of sadness and loss, hearing and otherwise that we all seem to be going through. I’m crying out “I want Wendy to hear” but your POST did not make me cry. It just added it to everything I have been reading about. Our little safe nest, Judy, Phylor, you, me, we’re all suffering and it’s NOT FAIR. I think it must have to do with mercury in retrograde or that’s what I blame whenever things go straight to hell.
On the hearing side, I have less than 50 percent in my left ear (probably much less by now because I refused to be tested for years). If I could afford it I would try and buy a hearing aid but with two kids going into college and the house disaster, well…let’s just say I need to win the lottery or rather I’d like to. I’m here, whenever you need me, to email or im or text. I need to make a stand on behalf of all of us. We’ve had enough of this shit, and we’re not GOING TO TAKE IT ANYMORE. (please). love, Laurie F.
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Well, honey, pretty soon you may be able to get a hearing aid pretty darn cheap….as in, I can’t use mine any more. : ) If I end up not being able to use one in either ear, there’s no need for me to hang on to them. If I end up having some hearing in one, I may hang on to it so if one breaks I have a spare, but i don’t know. That may be silly. I’ll talk to the audiologist.
I’m not grieving over losing my hearing. I’ve accepted it. It will just be hard to be completely deaf before I learn ASL. Hearing a little is better than nothing for communication. I’ll just have to keep a notebook and pens with me. or a white board : ) maybe pretty colors : )
don’t cry for this. It’ll be alright. I’m only concerned because I figured the shunt surgery would come first. It seems they’d want to get the pressure in my brain level before doing a different brain surgery. ugh…another brain surgery.
Oh, and we have to talk. It took me 3 breaks to read your post about Callie. Our lives have been so similar. (about all except children…and that could have been more similar, I will talk about that too. I’ll write soon.) Friend me on Facebook, I can’t friend you for some reason.
hugs wendy
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Losing your hearing must be so scary! I have some hearing issues — but nothing like you are going through.
I’m going to send you an email with some suggestions as to the fever and the swelling — need to remember the fever resource, and give you some ideas re the edemia.
Wish I could say something about your hearing, but although I’ve done some research on my issues (and hubby’s tinitisis and extremely sensitive hearing at times — if I don’t whisper, it sounds too loud — and I need the tv on a higher volume to hear it), you know much more than I do about the effects of meniere’s, implants, (and shunts for your other issues)
All I can offer on that is (((((hugs))))) and wishes that things could get better for you.
I’ll put the email togther re the other issues tomorrow — I need to redo some research on night fevers and edemia.
Sending you good thoughts!
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Phylor,
It’s not so scary. Losing my sight would be much scarier. I’ve accepted this. But I hear sound all the time, even when my hearing drops to nothing during some fluctuations. the tinnitus keeps me company. yeah, I know all about that stuff. it’s odd. but it happened so I had to deal with it. as I’ve said….I adapt. *wink*
Now if I went blind…that would be harder for me to adapt to. much harder.
Thank you in advance for the information, the doctors seem stumped. After finding out my thyroid levels were ok with the current dosage they went…I don’t know. great, so every night I feel like I have the flu. It’s just a couple of degrees, but makes me feel like crap.
thanks chica wendy
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PS: to Laurie — watched Network again recently; love that phrase, and the ways you can take it and turn it around to suit the situation. Brillant!
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Wendy,
You are able to hear color and form and touch and patience and love and life like a wonderful orchestral performance. Your life has been about learning to “hear” in ways that most of us can’t begin to imagine.
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Oh you are so right. I’m really not afraid of losing my hearing….well most of it. I’ve lost most of it. : ) I am a bit afraid to go completely deaf. A little bit just for communication until I learn a different way, and because people keep scaring the beejeebeeze out of me. They come up behind me and I don’t know they are there. Even Stuart comes in the room and I don’t know he’s there.. It’s freaky, I don’t know how to get used to that. But eventually I’m sure I will. I need to talk to my deaf friends about it.
I am excited about this opening up my world to the deaf community.
Now the possibility, no matter how small of losing my sight because of the intracranial hypertension…scares the crap out of me. Being deaf and blind. That’s overwhelming. But I have to remember. VERY REMOTE POSSIBILTY! and if it happens it usually only happens in ONE EYE!! So no stress, don’t freak out!
Thank you for stressing this fact. I haven’t been able to do much art, with the pain in my head. I can get on the computer…..limited some days….but darkening the room and dimming the screen as dark as it will go, sometimes I wear sunglasses too. I can see it fine. and need the distraction. but art….I’ve tried doing things, and it just looks like blobs. I’m getting there.
thank you again. see how you are the chief? hugs wendy
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Wendy…Wendy…Wendy. Have you ever considered that the reason you run a fever is because you are a hot, hot woman? Ask Stuart, see if he agrees.
On a serious note, can you take something like Tylenol? I think part of the reason I would feel hot is that my body was dealing with the added stress from being sick and having a don’t-know-what-you-have disease. Also, how much water do you drink during the day? Drinking more may help with the swelling, strange as that sounds, and if you are a bit dehydrated that could be giving you a low-grade fever. Or, could one or a combination of pills be causing the fever?
I don’t know what I can add about the hearing. It sucks, none of you should have to deal with it at all. None of us should have to deal with what we deal with. The really bad (read: selfish) part is that we would not have met each other and gotten to know each other, but, still. We shouldn’t be dealing with this dilly-dallying around. We’re the baby boomer generation. It’s not like the medical community didn’t know we’d be getting older and knocking on their doors with health problems. UGH! It’s late and I’m getting off my soap box now, I think it’s time for bed.
I hope you all have sweet dreams.
Maureen
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Oh baby, Stuart is telling me I’m a HOT baby all the time!!!! But this is an icky kind of, I don’t feel good fever kind.
And I really hate doctors when they ask, how much is it, and I hate to say…99 – 99.9 they think, not really a fever, but my normal temp is about 97 so this is a fever, luckily my GP knows my normal temp. She looks in her files and sees, what my temp is when I see her and I’m not sick. Yay. But the look they give me when I first tell them. Even my ear doc. He has 3 years of records that say my normal temp is in the 97 – 97.5 range ummmm look at my chart, I’m not normal! You should know, I’m just not normal. We know that don’t we???
Hearing….well, I’m ok with it. It just gets aggravating sometimes. I miss hearing Stuart ramble, and the birds sing, and silly songs. it’s hard for Stuart to ramble when talking with ASL we don’t know that much. And most of what we know is medical…just in case. : )
The fever. I can take Tylenol. And do, or Vicoden, depending on the headache too, it has Tylenol in it. they say none of my meds are causing it. I drink A LOT of water, have to with the Diamox (the med for the pressure, it’s a diuretic, but specifically for CSF, strange huh?) So I drink over a gallon a day! I have a 32 oz cup and drink at least 5 or 6…really. I’ve been up about 2 hours, I’m on my 2nd glass. And I drink 1 or 2 in the night. I have to, or my head gets worse. So water not the problem. But I do think I’ll look up my meds just to make sure. Dr. Gray thought possibly my hormones. Thyroid, but it’s right in line. I am hypothyroid, but I just had it tested, all 3 tests, and it’s normal, right in the middle. They won’t even test my other hormones because I’m on the pill. Damn I should have had them tested last year when I went off of them, but I’m not going off again now, I went all crazy with PMDD when I went off. Poor Stuart, I’m not doing that to him again. : )
You know growing up when I got sick I always ran a fever at night, very, very rarely did I ever run a fever in the day too. But this has been going on for months now so I know I’m not sick. it’s just weird.
And I know we wouldn’t have met if this all hadn’t happened…and I’m so glad we did. But you know what, I do wish things would stop happening to me. Can I just keep what I’ve got, or even have a bit less? Just don’t add any more? I’m tired. This morning I told Stuart, this isn’t a life. We have to do something to make me feel like I’ve got a life again. oh now I’m dizzy and sick. love to you. w
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