Somewhat Silent

The Silence of Deafness is an Abstract, not an Absolute.

April 24, 2008

I have finally been given an answer!

by @ 10:47 am. Filed under Sounds, Experiences, Discussion

…for what the ‘breathing through my ears’ feeling actually is!

I went in to the specialist yesterday for my first review since the operation in January and there was good and bad news.

Good news: My ear drum is healed. and I have been given an explanation to what this sensation I and everyone else on here has been having!

Bad News: My left ear drum is healed but is retracted again and it is inevitable that fluid will build up again very soon, and they dont want to risk putting tubes back in as my drums wont be able to take it, and the fluid will detieorate the middle ear bones and my residule hearing will suffer regardless!

Also… there is no cure for the sensation of breathing through your ears!…

What it is: My estachian tubes are in a constant state of dysfunction, they are always closed and in a constant state of pressure. I dont breath or hear or feel the way whats considered to be normal. My estachian tubes are under developed. This breathing through my ears is when the tubes open for a brief moment and actually function properly as they are supposed to!!!!

But because I have lived with this all my life, this feeling is hurtfull and uncomfortable. when I pinch my nose and suck in to make the discomfort go away, all im doing is putting my estachian tubes back into a state of dysfunction, which is what im used to and what feels normal to me!

He was honest and he said, he wouldnt give me false hopes, he said there is no cure whatso ever and that I will just have to learn to live with it.

He said it is common for people who have PET or ETD (Palatous estachian tube, or estachian tube dysfunction) I have the latter and this is my situation.

yours may be different to mine, but to be honest I dont mind that there is no cure, I wish there was but at least I have an answer :) :)

December 20, 2007

Hearing Dogs For Deaf People!

by @ 1:54 pm. Filed under Misc, Thoughts, Accessibility, Discussion

Ok I obviously dont get out enough! I never knew this! I can only find a UK link, but i think its a wonderful idea to have a dog that can be your partner and be your ears! they are trained to alert their owners to alarms, car horns, traffic, doorbells, factory and work related sounds, every sound both work and home related to help you feel secure in your hearing difficulty!

WOW!!! I want one! :p haha no really I think its a great idea, heres the UK link to read about it,: http://www.hearingdogs.org.uk/ 

is this service available anywhere else in the world? I cant find any links for here in Ireland, but ill keep digging! :)

I took a risk and sent him an Email!

by @ 10:29 am. Filed under Thoughts, Accessibility, Experiences, Discussion

I have just sent an email to my Specialist, I hope he doesnt think im a wierdo or anything, Im just deeply interested in finding out this puzzle that is the ‘Breathing through my ears’ phenomenon! This is the Email:

Mr Fenton, My name is Colette McNamara, a longterm patient of yours, please forgive me for emailing you on this email, as it was the only one I could access through the web to get in contact with you.
I realise you are busy, and I never get a chance to speak with you in the clinic, but I was hoping when you had the time if you would check out this weblog about the condition I complain and research about.
I write for a site called Somewhat Silent, and international weblog about deaf and hard of hearing and also medical issues.
The one subject I wrote about was well recieved with over 150 responces respectively about the title, ‘Breathing Through My Ears’
The condition of which I originally came to you with, and of which you have worked excellently to figure out, In april I got T-Tubes inserted and only called into see you last week about an irritation in my left ear which you perscribed ear drops to solve, and I have to return to you again in January.
I appreciate your help in trying to solve my ear problems that have been with me for 17years now! Prior to you there was Mr Keogh and now yourself!
I wanted to thank you personally for your efforts and wanted to share with you the responces I have recieved in trying to figure out this problem, of which many people all over the world also live with and have no name for, I started to write about this problem in June 2006 here is the link to that initial discussion:
http://somewhatsilent.com/2006/06/25/im-breathing-thru-my-ears/
Then I updated the discussion as I had met you and had worked a little through it:
http://somewhatsilent.com/2007/02/03/breathing-through-my-ears-discomfort-continued/
The Site itself is Somewhat silent and its link is here: http://somewhatsilent.com/
We would also love to have your say on the site, please feel free to email me back with your thoughts on the matter, I have undergone all this since I was 7 and have a deep interest in the medical side of things, not just the basics The face that there are an infinate ammount of people out there and their specialists are just saying its a simple ear infection intregues me, and I hope you too, I would love to learn more about it!
I hope you find it of interest, I go under the name Lette on the site.Thank you for your time, and I apologise for emailing you here again.
Colette McNamara.

October 20, 2007

Between a rock and a hard place!

by @ 6:55 am. Filed under Misc, Sounds, Thoughts, Politics, Accessibility, Experiences, Discussion, Discrimination

Here comes a rant, and im sorry, Im not talking to anyone in particular, I just need to get it off my chest! 

So I find most days I have to explain to people about my hearing, and it nearly always doesnt work in the sence that I can say the official title of my hearing loss is, ‘Severely deaf’, and yet I can answer people when they talk to me!
As I have explained before, Im neither completely deaf or completely hearing, im severely deaf, thats the title, and yet when I answer someone who asks me a question there like, WTF?? I thought you were deaf!! Deaf awarness is the problem, or the lack thereof! I have bilateral hearing aids, I lipread, and I sign only a tiny bit, my Lipreading is my main means of communication, my speach and voice sounds like that of a hearing person….but Im not! I cant hear a lot of things, and with that EVERY DAYYYY without fail I find myself like a broken record explaining, that I understand what you say and I can talk but I cant HEAR you!! People cant seem to understand that! and the days your tired and cant concentrate on lipreading and they ask you questions and you cant answer them, their like, I thought you said you could understand me and today you cant?? People actually think I make it up! But I dont, I suffer, and Sometimes its enough to make you want to lock yourself away, but you cant because life goes on and tough shit!

If we all cant learn to understand that deaf is deaf HOH is HOH and yes we actually can in a way all be lumped in together as a group and get on with it, but no…I see it so much, mainly in the Deaf community itself, that Profoundly deaf people dont want to know you if you can speak, that means you can hear and your not the same as them!!… Actually my situation can be worse, I believe, and this is a horrible thing to say but sometimes iit can be true: ‘What you never had you never miss’
Now this is only a small minority of deaf people im talking about here, the most iv met and spoken to are lovely and im mad about them, but there are those few, and it makes no sence to me, why anyone should be treated differently for any reason!

I had perfect hearing, and now I dont and I have had to adjust and its a much harder thing and it messes you up, and the fact that some people dont want to understand is so upsetting.
Im in the middle of all this, I have no rock to call my own, Im neither completely deaf or completely hearing, no doctor, no interpreter, no person, can understand unless they have had this proplem, and so few do… Iv spoken to people online to you lot and its great to discuss the problems on here because ye understand, but in real life iv only ever met, HOH people or profoundly deaf people, no one like me in the middle. I have no one to truely Understand…I have people to talk to about it, Keith is the best in the world, but sometimes I feel so isolated and even though it seems like im doing so well and understand everything, the truth is sometimes I cant, and sometimes I just want to be on my own. Most days it doesnt bother me, but other days it does, and theres nothing I can do about that! Its up to other people to understand, not me, im the one who has to live with it already, why should I have to to change any more, iv enough adjustments to make!

Yet there is a part of me who wonders should I just be deaf, as in only use sign, but that wouldnt be the truth, I can hear little things, and I lipread really well, and im well able to speak, so NO I dont need to send myself to a group because it bothers other people!

Yet there is a danger of me waking one day soon and ill have no hearing at all… I cant lie anymore it does scare me, it scares the living shit out of me, and yet if it happens I know ill adjust again, and get on with it, but still I cant help feeling scared about loosing the hearing I have left. I have had hearing, and loosing it is a big deal… I have adjusted this far, but could I really live without Music, Keiths voice, My families voices, birdies, everything we take for granted…
Im sure I could but it would be so hard, I am loosing frequencies on a regular basis, and im trying so hard to deal with it, and adjust…. but will there be a time where I cant adjust anymore? what then?

Currently im involved in the Deaf Community Center in Limerick, and they are great, Sandra there so so nice and I feel like for once I have a place in the deaf community where im actually accepted for the problems I have, everyone is welcome there, and everyone gets on, no matter how severe, profound or mild your hearing problems are…I feel more people and places have to take that attitude.
I for one would welcome it with open arms.

September 2, 2007

I now have a Blackberry 8100

by @ 5:25 am. Filed under Discussion

….now, how the hell do I use it??!! this is for sanctum who seems to know his stuff with Blackberrys, or anyone who might help me?

I have just aquired one from someone through work, but I need to get it unblocked so it will accept my ‘pay as you go’ simcard, so I want to know, do I need to be on a bill sim for me to use the net and messenger ect? or will it work with my ‘pay as you go’ sim? also was it built to be hard to use?? I find it so hard to type anything legible before an hour passes!!

I havent paid anything for this, and probably wont in the long run, but if I cant use it theres no point in keeping it!! and it looks sooo cool!!! I could just use it for calls but that would be a waste! any tips????

thanks!

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