Introduction (part 2)

I suppose you have already read the introduction, if not you may go back to the "introduction part 1" post and read it again. If you've done it, then you're right here ;)


I'd like to continue where I stopped writing ..


Introduction part 2


I think it might take a while until you get the whole picture of myself and my background history about my ear, that's why I'll start to build up this post here.

So in 2008 I had my acute hearing loss and when the situation seemed to improve after adjusting my hearing aid to the new hearing curve, the issue has resolved to me. I didn't want a cochlear implant at that time. I thought, with my hearing aid I can still hear and for as long as I still have some remaining hearing left, I think I should use it! 


Here's a video that I posted when I had my 2nd hearing loss:



The first few months were tough as I had to adjust to it. I felt as if ear drums hurt a bit, because the volume as increased to compensate the loss of 100db... so you can imagine,... after increasing the volume to almost 100db, it wasn't comfortable, but somehow my ear got used to it... and to my surprise the hearing curve stayed that way for two years, without changing much. I thought it would get worse because I am getting more volume into my ear (eardrum) that I thought this wouldn't be healthy. However, it didn't make any difference, the only positive one was that I could hear again.

So I tried it this way for two years. I managed to get along this way. I finally managed to believe that I don't need a cochlear implant at all... I believed it all until I had another hearing loss in February 2010. I stayed at hospital for about 6 days at that time but nothing changed. Even my acoustician couldn't help me anymore, when she tried to adjust my hearing aid to this second hearing loss... 


After fixing my hearing aid, I still couldn't hear well. I felt as if something was wrong with my hearing aid. That was the point when I really had to deal again with this issue "Cochlear implant, yes or no"??!!


In April 2010, I visited my doctor at hospital and had a talk with him about a possible surgery and what he would do and discussed it all in detail. They made pre-tests and all looked good on my side to be implanted as nothing has changed and my hearing remained useless.

During that time, I tried to keep myself busy, used this experience to fuel my inspiration and I wrote like crazy for the past few months. I wrote poetry that dealt with that situation, the insecurity about the surgery, the fear (will all turn out okay, will I hear again, how will it sound) and so on. I literally drove myself crazy but that was one of the best times I've ever had. Don't get me wrong :) I didn't like that I had that hearing loss but I wrote some heartbreaking poetry that I surely don't want to miss. I didn't even know what I'd write in the following months to come... I had the urge to write it all down, my experience, I kept a diary and wrote intensely about it, I wrote poetry whenever inspiration stroke me - This time I'll definitely not forget. I hope that through the poetry I'll be able to share a bit of my world, my experience and give people the feeling that you're not alone with this. I went through that. I know what it's like to be scared, to doubt technology, to doubt myself if my brain can adjust to it and so on. I cannot guarantee that the implant will work for anyone the same way does for me, in terms of "making it a success with hearing". Everyone of us is different and so is our background history about hearing.


I could always hear on my left ear, so I had the memory of hearing, the sounds and how things should sound, so maybe that influenced it all and I love languages and rhymes. It don't know if this is why I do so well with my implant but I only speak from my own personal experience. So that's why you have to make yourself the choice because if (if... ) it should not turn out the way you expected it or if it should take much longer for you to hear, there's no one else except you to blame because you actually signed the paper. That's why they want you to be sure. That's why you should wait until you can't benefit from your   own hearing.. only then when you can't anymore then it's the right time to get the implant, or think about and make the decision that you think is the best for you - to hear or not to. Both decisions are good, as long as you feel comfortable with it. I personally prefer to hear as I don't want to miss the sounds but there are also moments when I'm quite lucky that I have the advantage over hearing people, that I can simply turn off my speech processor in crowded places and can still enjoy the silence if e.g. I have to write something. :) or if I want to sleep with an open window in summer :)


I think I'll stop here although it's really interesting now but you need time for a break to digest all the information you just read :)


More will come soon!
Your bionic PoetryGirl

Sandra

Introduction (part 1)

A little introduction to this new blog. If you have found this blog by coincident or if I have told you, either way, I'd like to thank you for coming to this site. Spare me a few minutes so I can briefly tell you what this is all about.


This is my Sandra (or PoetryGirl) from Facebook/CCOR or mytruestory85 from YouTube.


I've decided to create a new blog. You can still find my old blogging account under "inspirational-guide" but I wanted to create a new one where I'll share things about my ear, my journey towards hearing and the poetry that I'm writing.


I came a long way from where I am now, so I don't really know exactly where to begin but I'll give you a brief summary.


I've been born with two "hearing" ears but due to an infection as a baby, (to which one I don't know exactly, either due to meningitis or middle ear inflammation) it left my both ears ossified. My right one is a lot more than my left one. That is also why I don't hear anything at all on my right ear. On my left ear, I do hear or have heard pretty well, all until 2008. (I'll come to it in a few mins).


In the past I had a couple of hearing fluctuations and I got my very first hearing aid when I was about 16 or 17 years old. I got it on my left ear.

It helped me a bit with listening exercises but there were still times when it was difficult for me to understand, either because I was thinking too much about the word that I have heard (was it "car" or "far")  or I didn't understand it at all. To make it short, it was tough here and there but I managed to get along pretty well with my hearing aid.

In February 2008, I had my first significant acute hearing loss. My hearing cure dropped to 100 db. I still still about my left ear as on my right I've never heard.

So I hope you can follow. Anyway, to come back... I have stayed at hospital for a week. It didn't really help me. They gave me infusion to make my hearing recover but nothing changed. I couldn't hear and I didn't even know that I could still use my hearing aid, the one I had at that time.


I figured it out later, when I went to my acoustician and he increased the volume of my hearing aid. When the volume was increased I could hear again - all of a sudden. So from this point on it was clear to me that I don't want to consider a cochlear implant surgery because I could hear again so I have closed that chapter. It's not the right time.


To be continued... (I'll write more later) let this be the intro (1part) and I'll go back later. :)


Thanks for reading (stay in touch) there's more ;)

Sandra

My video about my cochlear implant surgery is back

I was watching some videos about other people and their ear surgeries, baha, cochlear, etc and it made me want to put some of my videos about my surgery back as public. After some time I felt I shared too much, or too many things about per private life that I put them back as private. I felt I shared too much and felt vulnerable, even more when I shared my yt account with friends in my place. All of a sudden I felt so exposed. They asked me questions like, "why do you share so much about yourself?" and I was like why not? I have this youtube account for almost 2.5 years and I love to share. This way I found about about ccor because I shared my dream to write a book and Laura and Sandy sent me messages and let me know about ccor and the 100 day challenge. If you don't share you cannot expect to get advice and help.


I'm not sure if I put all videos of my surgery back but some of them I will and I'm sure it will help others. I didn't share so much of my ear in the videos but I therefore have more pictures to show if people want to know. In case you are new and stopped by at this blog. I had two cochear implant surgery within a week on my left ear, but now I recovered and my hearing is doing well.


I have some posts here, they were short but they provide pictures..
Holy cow where do I begin? (posted July 18, 2010)
Update on my surgery (posted July 20, 2010)
Had my second surgery (posted July 24, 2010)
Stitches are out (posted July 28, 2010)


I will write more soon. Btw, the book "Poetry Pieces of Europe" is already out wohooo. I'll make soon a video as soon as I get my copy per post :)) I'm so excited. I should get it before Christmas!

It's a miracle that I can hear

Hello!!

It's time to give you an update. A few days ago I tried to listen to music using this cable that I had in my big white CI suitcase. I didn't have the time to try it out earlier or maybe I just wasn't ready to try it out so today, it's already THREE months since I've had my surgery... (not one month, I didn't notice the typo before).. So today I wanted to give it a try. :)

I’m simply amazed how well I hear and understand. I’m listening to some of Anastacia’s songs and her voice sounds the same as last year when I could hear her with my hearing aid. This is a miracle. This electrode inside my ear gives my hearing nerves the stimulation and somehow my brain can use this electrical stimulation to make my brain understand what I hear. Wow this is beyond my understanding. Wow I was so suspicious and full of doubt that I could never hear music again. I was prepared to fully detest it but now, see where I am now. I can hear and enjoy it. :) I hope I can inspire many more people to go for the surgery. Of course it has to be their decision but things do get better. You have to take it as an opportunity, be open and just have fun with all the new sounds. I was listening a lot to music even before my hearing loss, and maybe this helped me I don’t know. I have no idea what influenced my brain to use all this information and make me understand what I hear. The CI gives me back my life quality. It was definitely the right decision. I don’t regret it and I don’t regret that I didn’t go for it earlier. It was just meant to happen this year.

This year I was the year for me. 2010 was MY YEAR :)

Talk at university | Poetry reading

Finally, finally this post.... I've been procraastinating with writing this .... not because I didn't want to.. I did other things instead.. so here's the post!!

I have good things to share! Last Friday my speech therapist at hospital sent me an email asking how I'm doing and he knows that I'm writing poetry. He asked me if I want to give a talk in front of his students and talk about what it's like to have a CI, the challenges and how it affected my life. He said I can also read a few poems if I want :))) Wow!! Awesome!! That totally made my day when I read his email. His lessons start Monday (tomorrow) and the next one, next month and so on. I want to come tomorrow but it's bad timing as I'm working and I don't want to have to excuse myself so I'll wait until November. Besides I'm not even prepared :P Omg, what am I going to say aaaaa, :) I haven't thought that ... I'm bit scared... phew... reciting some of my poems about my ear .. in front of a group of students. :O I hope they will be nice to me haha! What I fear most is when they start asking questions and I don't hear them. Okay I do hear good but what if I can't hear them :O (-.-) lol. I know it's ridiculous as I actually do hear good. We'll see! It's exciting nonetheless!! I look forward to November.

I'm not sure if this will take place at university or at school near the hospital area. I have to ask so I know. Wow that will be the first time that I have a talk and recite a few poems. I have the feeling that this will be the beginning.. it's kind of exciting. I used to get very nervous when I had to give a speech. I remember... uh .. :) and usually got red in my face, just from being nervous, phew.. but that was a long time ago. I think I've changed and this time it won't be like this.

Who wants to come there next Month?? :P

I cannot say any bad things about the CI, okay I did have pain and it was a tough decision but definitely not a wrong one. I needed the time to make this decision and I've led this battle for so long. In the end things turned out great. Hey I can even listen to music again. It didn't take me long to hear and enjoy it again :)))

Okay, as much as I'd love to go on and write I have to stop. It's almost 11.30 PM and it's time to go to bed!! I have to get up early tomorrow and go to work.

My processor is acting weird

Hello!!! It's time for another blog. I've been a bit lazy... and tired too but not from writing. I just feel tired in the evenings. Where do I begin????

I'll begin with this beeping that I hear... "beep, beep, beeeeeeeeep" than it stops, what the fuck???? Why do I hear that??? This doesn't sound like a tinnitus, .. or some sort of electrical tinnitus? does that even exist?? no way... seems like my processor is acting weird sometimes... hm....

It could be because I forgot to switch back my processor to the default setting, it is on "t" which is for phone calls .. I don't know how to explain it but I have a remote controller where I can switch between the two programs and I forgot to switch it back after work and I left my remote controller in the office so... hm, when I hear with this program, it seems that my processor is very sensitive to electromagnetical things, or... hm e.g. when I walk past a bank and come close to the door my hearing aid makes a strange sound => noise not sound, it makes a strange noise, I don't know or when I put my hear close to my keyboard on my computer => woah it's loud!!

And yes that side where I have the implant feels really gross, uncomfortable and sometimes itchy (O_o) (-.-) I didn't go and visit a doctor because I don't think it's necessary... it's just this feeling that I have as I have the processor on my hear, my glasses and all this is just too much for my ear. Maybe I should start and wear my contact lenses again, hm...

I'm sorry for my last post | I'm okay :)

Hi there,
I'm sorry for being a b!tch in my last post ... I'm fine really. I distracted that thought and I'm okay. It was just one of these days where I had bad sleep, tinnitus at night and all this and even before that I felt awful... but okay. The good think is I wrote poem last night at 2 AM wow =) yeah at least this helped me to fall asleep again. So once I finished it I was tired and the funny thing is, the last few sentences from my journal that I wrote, before I doze off I couldn't even decipher anymore... This morning I was like "what did I write there??" I couldn't read it anymore...


Anyway, I'm glad I do have my friends those in my town, far away and my online friends =) I love you all. I'm sorry for this negativity and for making some of you guilty. I know that I did that, I can feel and see it - I AM SORRY!!!!! Let's forget all this! Forgive and forget right? =)
So, I'll go back to my photo book. I have the idea of creating a photo book with pictures and text so I can remember my CI surgery and the things. It's not that I have to but why developing pictures when I can do that here ;) It's more fun!!! So that's what I'll be doing this week and hopefully I can finish it by Saturday so that I can place the order. This book will be for private use only, so I can read it and put it in my shelf where all the other pictures are and the photo albums :)



And I have a lot more things to do.... I need to rewrite my poems into my other collegue notepad that I have, which I started a year ago... why? Just because I want to. I want to keep the poems all in one place and have one "back-up" handwritten just in case. It's good! If all the poems get lost, God grief I'd be VERY UPSET!!!!! So let's not even think about it. I must prepare for it. So make sure you make back-up files of anything that is very important to you :) I'll have to do that too and back up my poems, journals and pictures.
Anyway, thanks for reading. I felt like writing :))