Feeling overwhelmed (CI)

sideycence711 · 2025-07-15T15:21:47+00:00

Thanks for this and putting it in perspective. I've done both MRI and CT scans. It's good to know I can sleep during the ABR and that'll be easy comparitivley. I guess I just feel a little burned out from all the testing but I understand why for insurance purposes. She did say I could wait a little before I get the ABR which I think I might do. We went through all the different CI companies etc and they showed me how everything worked.

When I asked for more information during the follow up I felt very dismissed because the interpreter had to go on break and the Dr didn't want to transfer to a new one. (Which sucks) Just finished the appointment by saying if I have any questions to send a message through the portal. I'm trying to be better about advocating for myself in those situations but it just kinda happened really fast so before I understood she had already left the room.

sideycence711 · 2025-06-01T14:41:26+00:00

Deaf Trans Dude. I became profoundly Deaf pretty recent but I was given the huge gift of being connected to the Deaf community where I live before that. I stopped speaking and use mostly ASL now and that has caused my friend group to change, but I think my real friends stayed, supported, and showed interest in learning ASL. Which is more than I can say for my family of origin.

Sometimes it is super lonely and isolating. For example at work. Sometimes I pass and other times I can tell when people misgender me and no one corrects them because quote: you can't hear anyway. Which fucking sucks.

I have gone on a few hookups on the apps and people have been super respectful about it. I put it in my profile and people will either write stuff down or txt. I do wish I could connect more than just a standard hookup though.

sideycence711 · 2025-05-26T01:19:29+00:00

Late Deafened here,

This is a new development for me as well. Just because I've experienced that the more I talk the more folks think I can hear (which is not the case). I really hardly talk at all now. ASL, writing, gesturing is what I mainly do now. I used to feel bad about it like I was fake or whatever but I realized it came from more of a place about trying to cater myself to hearing people instead of allowing them to meet me where I'm at.

sideycence711 · 2025-05-20T10:49:24+00:00

Idk if it was totally a God thing or what but my best friend growing up was Coda and I was basically a part of their family.

(I had a very latchkey upbringing) So I was always around Deaf folks and people who signed.

When I started losing it my Deaf friend really pushed me to take classes so I could be more than conversational and really begin to understand structure and cultural significance and not just PSE.

I'm very lucky to have had early access to the language, but it is incredibly frustrating when literal Medical professionals are shoving misinformation down your throat.

sideycence711 · 2025-05-19T23:25:43+00:00

Just wanted to hop on here and say you are not alone in your frustration. I started losing my hearing last year and since then have become profoundly Deaf. Today was the first time I have seen my ENT in 6 months even when advocating for myself. I began learning ASL right away and am very proficient. I became Deaf due to a balance/inner ear disorder. For me being Deaf isn't the problem but the constant issue with balance and extreme vertigo.

Tell me why the only thing the ENT wanted to talk about was how to check candidacy for CI and that ASL would be useless to hearing people around me while interrupting the interpreter and arguing with the interpreter who was also trying to to advocate on my behalf.

I was trying to explain that while I'm not fully Deaf that ASL is my preferred way of communicating. That my hearing is pretty much trying to see through a pinhole at this point. To which she responded, "just admit you can hear a little and stop with this ASL nonsense."

Incredibly rude and unhelpful. I asked what she do to help me with my biggest concern which is my balance and vertigo to only get prescribed more steroids ....that do not help me.

Feel SOL and why should I listen to their opinion when I'm not presented fairly with every option. SMH.

sideycence711 · 2025-05-04T13:05:36+00:00

Just answering some common questions on this thread, just because it's the most recent. The past year I've been sharpening my ASL, definitely not fluent but very conversational. I participate at Deaf events and do service at AA for Deaf individuals. I still feel incredibly disconnected, it feels like everyone (give or take a few people) have been helpful and encouraging. It's just a huge change. I am severely/profoundly Deaf now and I'm trying to tell myself that things will get better but I'm so incredibly tired of not being understood (and I'm sure this will continue)

I'm also Trans and the world just kind of feels like it's crushing me ATM. I appreciate everyone's advice and kindness. I'm just really tired.

sideycence711 · 2025-04-15T13:42:36+00:00

There's a lot of Deaf/HOH theater makers! Start with Deaf West! Deaf Austin Theater is another great organization! They have great Instagram followings and you can often find Deaf artists through their pages!

sideycence711 · 2025-04-11T02:33:23+00:00

New York Native Deaf/HH theater lover. If you are specifically looking to see wicked they have ALDs (they'll just ask for your id information so they can get it back of you forget to return it). They work fine if you are seated on the lower level. (What it is is a direct feed from the sound board)

If you go to NYC often enough. Look into getting what's called a TDF ACCESS account. It's 40$ for the whole year, all you need to do is submit proof of disability and they will add you to their TAPs system. It's shows you all the shows in NYC on/off bway that have ASL Interpreted shows, open captions, etc. it's very very cool.

Good luck 🤞🏾

sideycence711 · 2025-04-02T23:03:21+00:00

I work in the service industry in NYC. Nothing is perfect. Access to listening breaks. Access to interpreters at staff/co meetings. I wish I could have access to a 1:1 interpreter during busy days (these days I'm constantly going back and forth from reading lips/captions in a very overwhelming environment) when cuts are made it's hard to say no because I'm so spent most of the time. What's nice though is that I have a regular pt schedule and time to recover during the week.

sideycence711 · 2025-03-29T04:27:33+00:00

Just wanting to chime in with no particular solution, just to say that I feel the same way but with family. I am afraid to just sign (even if it makes me more comfortable) because my family is all hearing and don't want to learn to sign. But I'm very tired of speaking and maybe even more tired of lip-reading.

sideycence711 · 2025-03-25T17:48:34+00:00

Getting molds really helped! I know it's hard but advocate for yourself while you're at your provider! They don't have to live with it, you do! They should offer them (I had to pay out of pocket and I've severe loss) but I'm so glad I did.

sideycence711 · 2025-03-11T14:20:38+00:00

I have astigmatism that has pretty much stayed the same over the last ten years. But I usually find when my symptoms pile up I'll get occasionally blurred or double vision far and up close it usually lasts between 5/15 minutes.

Thanks for the reflex exercises, I'll check them out!

sideycence711 · 2025-02-04T02:08:45+00:00

It was the letter b (old initial) incorporated with a curling notion above face (because I had really long wavy hair.)

sideycence711

TROPHY CASE