I just need to get it off..
Sometimes some days are GREAT with my CI.
Others are not so great but I cope.Because I want to hear!
Some days I'm so thankful for the chance to hear again and to be able , just today , to discriminate some words from the tv.Or other things on other days.
But my progress has been slow and frustrating.Maybe my audie needs to get a better map for me.Maybe he isn't competent enough.Maybe I'm just one of the tricky patients.Or maybe I should speak up more on mapping points.
Another aspect is that nobody warns you about the changes , transitions.Not the ones from the sound , but the change from Hearing aids to CI BTE's.
I went from a Widex hearing aid Senso+ P38 ( I don't know how powerful it was , but I had it for 10 years , and it worked well for me.Served me well.Before that I couldn't even imagine talking on the phone , not to mention other things. ) which I have still in a drawer , in it's case , like I used to do every night.I can't even give it away to Lion's Heart or something similar, just to help people , because I'm still emotionally attached to it.
I still expect to wear my Senso, even if I'm 16 months implanted , and going.
But I also remember one thing clearly.That my hearing aid used to be so light.I couldn't feel it at all.
Or maybe I'm not attached to my CI yet.Maybe it is because it's so troublesome.Or it is maybe because I had it less than two years.( For anyone wondering , I'm just a person that doesn't do anything if she's not emotionally attached to it.Just because.Especially when it comes to something that I will have for life.)
When my CI was on my ear , it was still SO numb that I couldn't feel the weight.You see , I was activated soon after CI op ( something close to 3-7 days , I can't remember , and I can't be bothered right now to check )
I was feeling like my ear was going down a few days later.No , my actual ear , not my hearing.That's when I googled on CI blogs.I found an unimaginable trove of information , and a lot more.Before my CI operation I had logged on CI brands homepages and researched.My choice was obvious , because I didn't like MEDEL ( it was the only other option offered to me ) and I tried to contact the CI people in Greece.We even have a club.Which, is not active.the webpage wasn't even functional.their forum wouldn't let you register.UGH!
When I heard that activation abroad was a month later , I was floored.I also started to suspect that my early activation might be the culprit for all my ear troubles.
Because when I'm pulling my CI , I don't feel relieved because I can relax.Or that I can have some peace.I feel relieved , well , because I think , there goes the weight off my ear.
I tried the shoulderworn approach.It was very helpful and useful.( Thanks Kylie ) but , I'm so used to wear something on my ear that I don't feel right.Also that isn't workable anymore because I lost both of my pouches that Kylie generously provided me.
I decided to order a Snugfit when I went to get my controller replaced.The office that represents Cochlear in Greece , didn't have any in stock.It had only a child sized pair.They had to order some from Switzerland.I ordered a brown large pair.They wanted to be paid upfront.I told them I will pay on delivery because I need my money for going back home ( I was on Athens after having to see Rachel off from airport ).Also I had dealt with other companies like these that always promised delivery , got your money , and then they couldn't even recall the order.UGH.So they promised to deliver it.I ordered them to be delivered at my parents home, so they can sign it off and get it.Because of my mapping that I can't hear my $^%& doorbell to get the delivery.And on the estimated dates , I was supposed to be on a day trip somewhere.
Well big surprise here.The snugfit , two weeks later hasn't been delivered either here or my parents' home.They promised a four day delivery at the very least.
and today I snapped.My ear started again tingling and stating that it had enough.I got CI off, switched it off , twisted controller off and wore it again like that.Just the processor, without the controller part.And I feel like bliss , but I also feel like I want to hear.And that drives me crazy.
I can wear the full BTE for four to five hours without my ear complaining.After that all bets are off.
I even go without CI when I'm home , just to not have to think about it.Everybody that has seen me , can attest to it.
I always planned to get a babyworn cord , because here in Greece we don't have backup CI's.And I like being able to get the BTE when I go out.But somehow , it gets on the backburner.I have to pay for that bill.I have to repair something.
Maybe I had a bad week and I'm getting it off on the CI.Who knows.The thing that I know right now is that my ear approves from just the processor on the ear , that says that is just right.
Maybe Cochlear should provide with everything in their box.Even a babyworn even if it's for adults box.Snugfits.
Some insurances won't cover for anything else except the CI operation you see.And CI's are expensive.
Even the Coil costs double the price here.Even the setup for Babyworn.
and I'm back on plain batteries because I shouldn't have brought my charger in that sucky hotel.Now it's not working right , and I found it was the power cord which needs to get replaced.
My coil is giving signs of dying out , it starts to crackle.Thankfully someone sent me a free coil a while ago, out of her heart's goodness.Hi yourself if you're reading that!
I also want to pay someone back , but my bank is giving me trouble with paying back abroad.
I also had a nightmare experience when I had to go to a private practice to get my teeth x-rayed.I had to get a front and a side xray.I removed my CI.Immediately my ear went like WHEW the weight is off.That just made me feel inadequate.and I couldn't hear.Then I was told in no uncertain terms that I have to remove my glasses.Well , I removed them.The lady kept talking to me.I couldn't see her clearly enough to lipread so I put them back on.She was cross.I told her that I'm deaf already, and without my glasses , I'm all but blind as I can't see her well enough to lipread her.She was cross but I stood my ground.She finally saw my point so I sat on the xray machine while she directed me.when I was all set she went you can get them off.I got them off , but the little squabble added to my frustration.I was pleasant and everything , but inside I was fuming to myself for feeling inadequate enough.
At least I scared the xray people with seeing a cord thing in my side xray.That was the ground wire or the electrode.LOL.The doctor came back outside and asked me what the hell was that did I wear anything on my hair.Then he stopped on his tracks as he saw my hair was so short that no ornament could have sat there.I told him about CI operation and raised some awareness.He was interested to learn that.He wanted to ask more but he had to xray more people.*smile*
And I had to pay in the front desk for the xrays.*grumble*
Greece has a lot of expensive things AND bureaucracy.
Right now I just want to forget where I'm living.To forget that I have the farmer's insurance in Greece , which is the WORSE insurance in Greece.It won't even cover ANY of my dental plans ( much less any of CI related stuff , except for CI operation ) , and I discovered it this afternoon , it definitely won't cover the braces I need.Or the wisdom teeth removal that I'll go under in Nov.So my family has to fork over the money , just because.
Whew , I feel a lot better.But I also don't want to burden anyone else.Sorry.But I just want to take it off.
I just hope tomorrow will be in a positive way.Or I just had a particular bad day.
Wednesday, September 30, 2009
Saturday, September 26, 2009
A visit ,a cracked processor and a lot of thoughts.
A few weeks ago I had a visit from the fabulous Rachel Chaikof who is very vibrant and nice - I think I made another friend.
Everyone knows that Rachel is a great advocate for CI's.She also is bilateral ( something that is exceedingly rare in Greece , although I can hear some scattered bilaterals here and there in Greece.), and she has been giving me tips on advocating and I've been telling her all about the situation here.
Here is me and Rachel on the Castles of Salonica , a place at the upper parts of Thessaloniki.This pic was taken with permission from her site
I had a lot of fun with Rachel, but about pics and places - go to her site she has about traveling.
We went to Thessaloniki's places and we also tried Athitos ( or Afitos as we Greeks say it , that place has two names ) , Rachel , remember the old granny? LOL. We also went to Athens and Acropolis and a lot of other places.I wish she could visit again sometimes so we can plan more trips around here.She made me see my country with new eyes....
I also had the chance to see someone that is bilateral, because as I said earlier , that practice here is non- existent, although I've been wanting that for myself , but I can't afford it.
I noticed a LOT of differences , and I'm certainly going to try and go bilateral.I am waiting on an email from my insurance that I'm pretty sure it will come back negative.But I've been persuaded after ONE trip to port bay where I couldn't hear ANYTHING while she could hear me so good that I was floored , and I had a lot of thinking about it.
Rachel also tries a lot of things that I don't try , such as Telecoil - which was pretty disastrous with my hearing aid - all I could hear was noise and nothing else , and it's been the same when I first tried my CI.The culprit now was my laptop fan which overwhelms everything else , I tried using it in buses , and other places when I'm away from laptop , and to my surprise it works better than I was expecting!
She also suggested to go for a better map and I'm certainly going to do that after elections occur ( right now I have no desire to trek down to CI centre and get nightmare traffic jams , I'm not that masohistic! )
I was so pleased to meet Rachel and I hope she comes again sometimes , she certainly is welcome here.We also share the love of knowing new CI implantees , which I do here in Greece.Right now I'm in the proccess of helping a new candidate take the decision for her implant ( she's going for Cochlear too ) and helping her with a lot of advice.
I certainly feel more enriched and with a different perspective , and although she's certainly gone through so much and still have a vibrant smile , made me want to do the same and try and make some changes.
On other news , while Rachel was here , the Nucleus 5 was unveiled , which got me pretty excited.I also posed the question to Cochlear forums when that is going to be approved in Greece and I was directed to Damplaid Inc , which is the representative of Cochlear here in Greece.UGH!
Cochlear needs to open its own offices here in Greece , Damplaid is taking advantage of having the representacy and has pretty high prices.But that is certainly something I've blogged about.
Also I've stopped using the rechargeables for the time being - since I got back from Athens my cord charger isn't working right, and I'm afraid of putting it in case it does something worse, as I've paid for my batteries , so I need to be careful,I certainly need to replace the power cord sometime.For the time being I'm on plain batteries ( which I need to spend anyway as they 're from last year and they going to expire. ) , and that made me remember why I made the switch ( aside from economical and ecological reasons ) was that I always fumbled with the small batteries and I always would lose one.I lost one on the stairs today.ugh.
Also , Rachel saw my CI one day when we were trying to find a solution for it to stay on my ear and mentioned that I have a cracked controller - WHAT - and I was so embarassed I didn't notice.My CI is so dark that I never noticed.I got that replaced though , easily , although I was a bit shocked at the place where I got it replaced ( that is another blog post though ) , but what concerns me , is a cracked processor affecting hearing ? Because I definitely noticed a difference.I think my processor was cracked for quite awhile , because now I can hear very faintly the doorbell ( although only if I'm under it and if I know it's GOING to ring ).
And Rachel's solution worked for few days , then it started again falling out.UGH!! I've been checking thoroughly for another crack.So far I've been lucky.The shoulder worn doesn't work so great now because I need a safetypin pouch ( I'll have to order one )due to me wearing high necked clothes but I'm also going to check out if I can find a babyworn cord , see if that helps me.I don't mind how it appears , as long as it helps me.
Regarding controllers cracks I've been checking other kids processors in speech therapy and telling them to go replace them if they're under warranty.Most of the parents are thankful about my advocating even to them, as they know I'm just trying to help them.
Oooh , before I close I should share something.Rachel has that big camera , which she let me try a few times , and I could hear her shutter clicking.at first I was what the hell was that?then I understood it and it started bugging me , as I couldn't hear my camera's shutter.Well a few minutes ago I managed to hear it.YAY!
Anyway I should stop here or I'll go on forever.
Everyone knows that Rachel is a great advocate for CI's.She also is bilateral ( something that is exceedingly rare in Greece , although I can hear some scattered bilaterals here and there in Greece.), and she has been giving me tips on advocating and I've been telling her all about the situation here.
Here is me and Rachel on the Castles of Salonica , a place at the upper parts of Thessaloniki.This pic was taken with permission from her site
I had a lot of fun with Rachel, but about pics and places - go to her site she has about traveling.
We went to Thessaloniki's places and we also tried Athitos ( or Afitos as we Greeks say it , that place has two names ) , Rachel , remember the old granny? LOL. We also went to Athens and Acropolis and a lot of other places.I wish she could visit again sometimes so we can plan more trips around here.She made me see my country with new eyes....
I also had the chance to see someone that is bilateral, because as I said earlier , that practice here is non- existent, although I've been wanting that for myself , but I can't afford it.
I noticed a LOT of differences , and I'm certainly going to try and go bilateral.I am waiting on an email from my insurance that I'm pretty sure it will come back negative.But I've been persuaded after ONE trip to port bay where I couldn't hear ANYTHING while she could hear me so good that I was floored , and I had a lot of thinking about it.
Rachel also tries a lot of things that I don't try , such as Telecoil - which was pretty disastrous with my hearing aid - all I could hear was noise and nothing else , and it's been the same when I first tried my CI.The culprit now was my laptop fan which overwhelms everything else , I tried using it in buses , and other places when I'm away from laptop , and to my surprise it works better than I was expecting!
She also suggested to go for a better map and I'm certainly going to do that after elections occur ( right now I have no desire to trek down to CI centre and get nightmare traffic jams , I'm not that masohistic! )
I was so pleased to meet Rachel and I hope she comes again sometimes , she certainly is welcome here.We also share the love of knowing new CI implantees , which I do here in Greece.Right now I'm in the proccess of helping a new candidate take the decision for her implant ( she's going for Cochlear too ) and helping her with a lot of advice.
I certainly feel more enriched and with a different perspective , and although she's certainly gone through so much and still have a vibrant smile , made me want to do the same and try and make some changes.
On other news , while Rachel was here , the Nucleus 5 was unveiled , which got me pretty excited.I also posed the question to Cochlear forums when that is going to be approved in Greece and I was directed to Damplaid Inc , which is the representative of Cochlear here in Greece.UGH!
Cochlear needs to open its own offices here in Greece , Damplaid is taking advantage of having the representacy and has pretty high prices.But that is certainly something I've blogged about.
Also I've stopped using the rechargeables for the time being - since I got back from Athens my cord charger isn't working right, and I'm afraid of putting it in case it does something worse, as I've paid for my batteries , so I need to be careful,I certainly need to replace the power cord sometime.For the time being I'm on plain batteries ( which I need to spend anyway as they 're from last year and they going to expire. ) , and that made me remember why I made the switch ( aside from economical and ecological reasons ) was that I always fumbled with the small batteries and I always would lose one.I lost one on the stairs today.ugh.
Also , Rachel saw my CI one day when we were trying to find a solution for it to stay on my ear and mentioned that I have a cracked controller - WHAT - and I was so embarassed I didn't notice.My CI is so dark that I never noticed.I got that replaced though , easily , although I was a bit shocked at the place where I got it replaced ( that is another blog post though ) , but what concerns me , is a cracked processor affecting hearing ? Because I definitely noticed a difference.I think my processor was cracked for quite awhile , because now I can hear very faintly the doorbell ( although only if I'm under it and if I know it's GOING to ring ).
And Rachel's solution worked for few days , then it started again falling out.UGH!! I've been checking thoroughly for another crack.So far I've been lucky.The shoulder worn doesn't work so great now because I need a safetypin pouch ( I'll have to order one )due to me wearing high necked clothes but I'm also going to check out if I can find a babyworn cord , see if that helps me.I don't mind how it appears , as long as it helps me.
Regarding controllers cracks I've been checking other kids processors in speech therapy and telling them to go replace them if they're under warranty.Most of the parents are thankful about my advocating even to them, as they know I'm just trying to help them.
Oooh , before I close I should share something.Rachel has that big camera , which she let me try a few times , and I could hear her shutter clicking.at first I was what the hell was that?then I understood it and it started bugging me , as I couldn't hear my camera's shutter.Well a few minutes ago I managed to hear it.YAY!
Anyway I should stop here or I'll go on forever.
Saturday, September 12, 2009
Seeing my country through someone's eyes.
As I wrote before , Rachel Chaikof came to see Greece , after Israel.
We've been walking , making friends , and most importantly , TOURING , and she shot countless pictures.We're yet to finish the touring ( which will culminate in Athens ) and today is a relaxing day.
Her pictures , and most importantly , her blog posts about Greece , make me see my country with different eyes.I still have the same perspective about my country , but I also find that I have different lenses to look through.
I love talking to her about everything and anything.I feel enriched. Oh , and she passed down some of her movie obsessions.But more than everything I feel like I'm slowly gaining another friend , another perspective in life , and most importantly , learning from her experience.
Last night when we were watching movies and talking until the small hours of the morning , although VERY tired from the previous day , I felt something that I could not identify at first.I felt content.
Life is so better when you try different things.
Oh and as a side note , my english comprehension is going up!!
We've been walking , making friends , and most importantly , TOURING , and she shot countless pictures.We're yet to finish the touring ( which will culminate in Athens ) and today is a relaxing day.
Her pictures , and most importantly , her blog posts about Greece , make me see my country with different eyes.I still have the same perspective about my country , but I also find that I have different lenses to look through.
I love talking to her about everything and anything.I feel enriched. Oh , and she passed down some of her movie obsessions.But more than everything I feel like I'm slowly gaining another friend , another perspective in life , and most importantly , learning from her experience.
Last night when we were watching movies and talking until the small hours of the morning , although VERY tired from the previous day , I felt something that I could not identify at first.I felt content.
Life is so better when you try different things.
Oh and as a side note , my english comprehension is going up!!
Wednesday, September 2, 2009
Odds and Ends
I just can't believe that summer is over..I had fabulous time that summer , and that made up for last summer too , I hadn't felt like that for two years...
This summer it helped me more than anything.My parents even did their part , instead of us bickering all the time ( mostly for the big stuff ) we decided to let them drop for few months and really enjoy some family time.Boy , did that help!
We went a boat trip to Samothrace three times , and I stayed to homebirth place too , to see friends and relatives.I even went camping on my own, to meet some friends there..it was GREAT.
I returned to my apartment to fix bills , try to make the home presentable , and to look after Theo for few days.Right after week's old Theo stay , my parents came to stay and install the AC..Figures it would be installed on the first cold day of fall! I'm lucky like that! At least it'll be there for next summer..
In a few days I'm expecting a certain someone , and thanks to my dad , I'm in my sickbed , suffering an allergy attack which usually lasts a week, and add that up to exhaustion due to lack of proper sleep , and that adds up to someone pretty grumpy , getting hot and cold flashes , and a pretty annoying cough! ( Dad opened the porch doors wide at the living room , that's where I sleep when my parents come , to be as far away as I can be from their smoking , and because they get the double bed to sleep. and I was sleeping only in a nightie , which resulted in me getting a cold , which resulted to allergy attack , and frozen shoulders.Left one is still a bit sore , right is back to normal thank god! Thanks a bunch Dad for making me miserable even after forbidding you open up anything before I'm awake and properly dressed.NOT! )
I just hope that I'll feel better soon ( best case scenario I'm better by Saturday , but that's a long shot.Worst is Tuesday , but that's not acceptable either.So I hope by Monday morning to at least be up and running , the exhaustion is no joke!! )
I just can't wait to meet someone though!!! It's only FIVE days till I meet Rachel Chaikof , although I'm nervous that I'll be embarassed either from speaking mangled English , or letting my shyness overwhelm me and not speak at all.Or even bolt from the airport.Ha ha.The last just isn't going to happen , don't worry. But I'm worrying for the first two possiblities , but I'm going to brave it , and wing it.I will survive , and so she'll do , and I dare say she'll even thrive!
I rambled far enough , and I have to go back on my book...I'm reading breaking dawn , from Stephenie Meyer.It's good..Next on my list is a greek book , then I want to read something fantasy or sci fi too..but what? nothing too scary , but exciting , different.Any suggestions ?
I also am thinking of trying audiobooks in english soon , see if I can understand anything...but I got confused with the abridged and unabridged versions.Anyone can help me here?
This summer it helped me more than anything.My parents even did their part , instead of us bickering all the time ( mostly for the big stuff ) we decided to let them drop for few months and really enjoy some family time.Boy , did that help!
We went a boat trip to Samothrace three times , and I stayed to homebirth place too , to see friends and relatives.I even went camping on my own, to meet some friends there..it was GREAT.
I returned to my apartment to fix bills , try to make the home presentable , and to look after Theo for few days.Right after week's old Theo stay , my parents came to stay and install the AC..Figures it would be installed on the first cold day of fall! I'm lucky like that! At least it'll be there for next summer..
In a few days I'm expecting a certain someone , and thanks to my dad , I'm in my sickbed , suffering an allergy attack which usually lasts a week, and add that up to exhaustion due to lack of proper sleep , and that adds up to someone pretty grumpy , getting hot and cold flashes , and a pretty annoying cough! ( Dad opened the porch doors wide at the living room , that's where I sleep when my parents come , to be as far away as I can be from their smoking , and because they get the double bed to sleep. and I was sleeping only in a nightie , which resulted in me getting a cold , which resulted to allergy attack , and frozen shoulders.Left one is still a bit sore , right is back to normal thank god! Thanks a bunch Dad for making me miserable even after forbidding you open up anything before I'm awake and properly dressed.NOT! )
I just hope that I'll feel better soon ( best case scenario I'm better by Saturday , but that's a long shot.Worst is Tuesday , but that's not acceptable either.So I hope by Monday morning to at least be up and running , the exhaustion is no joke!! )
I just can't wait to meet someone though!!! It's only FIVE days till I meet Rachel Chaikof , although I'm nervous that I'll be embarassed either from speaking mangled English , or letting my shyness overwhelm me and not speak at all.Or even bolt from the airport.Ha ha.The last just isn't going to happen , don't worry. But I'm worrying for the first two possiblities , but I'm going to brave it , and wing it.I will survive , and so she'll do , and I dare say she'll even thrive!
I rambled far enough , and I have to go back on my book...I'm reading breaking dawn , from Stephenie Meyer.It's good..Next on my list is a greek book , then I want to read something fantasy or sci fi too..but what? nothing too scary , but exciting , different.Any suggestions ?
I also am thinking of trying audiobooks in english soon , see if I can understand anything...but I got confused with the abridged and unabridged versions.Anyone can help me here?
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