I’m so sorry you’re going thru this. I hated the medications . Humira wasn’t available when I was diagnosed, no clue what it’s like.
The surgery itself was very easy. I was comfortable enough to go back to work the next day with an itchy but fairly painless wound behind my ear. The lead- up to the surgery seemed more involved than I expected, but more tedious than anything else.
Then in a couple week, they turned the CI on. I still had hearing in my other ear, with a hearing aid. The sound thru the processor was so odd that it was funny. Everything sounded bizarre. But that gradually changed , over another couple of weeks, and after that my brain expected the tones it heard and things began to seem quite ordinary. My speech recognition sort of kept improving for about a year, til it reached something like 92%, where it still is.
I think my overall hearing kept changing for the better even after that. I’ve since read that this happened because my brain kept learning more and more about how to deal with the inputs it got. I wish I had known about aural rehab then, it probably would have made all that happen faster.
And the best part —no more medications!!
Does that help? I’m happy to talk about it, but it would be great to learn what you’d like to know.

So it’s my understanding that it’s like a magnetic piece it sticks to the side of your head kind of underneath your hair maybe or behind your ear is that comfortable? I was surprised to find that the surgery was so minor. Do you have to go out a lot for check ups? Can you partake in normal activities without issue? Do you take them off at night? Is it kind of weird not being able to hear anything at this point if the meds are working that left here would probably be a candidate, or at least close to being a candidate for the CI. The right ear does have hearing loss, but I can hear as of this point, but as you know, this is more than likely just gonna get worse like yours did.

It was a tough time, for sure. When you first realize that your hearing is at risk, it’s just awful. My friend called it a personal earthquake. I remember struggling with it all, and in the midst of feeling physically crummy from the meds.
I cried, screamed, stayed in bed with the covers over my head, you name it. It’s painful even knowing someone else is going thru it

I was about 45 when the AIED hit. At that point , if I remember , my hearing loss was diagnosed as severe. My hearing just progressed to deafness gradually.
I hated the way I felt on the meds and needed to look for a job. I guess I decided that I’d rather be deaf than sick. So I stopped the meds and went back to school to get trained in a field that didn’t need me to hear well. I had been a teacher at a community college.

I’ve read that many autoimmune diseases hit women disproportionately. And stress impacts everything. But I have a hard time fitting personality into the picture. I think the disease and your hearing don’t give two hoots about personality. I can’t imagine that the researchers who gathered the statistics about AEID even met the humans who were diagnosed. If you are type A you’re lucky, you’ll have plenty of drive to cope with all this.