One month later!

Hello all!  I just want to give a shout out to Kristin S.  as she keeps hasslin' me to update this blog- so thank her for this update!

I was just in for some hearing tests and speech testing on the 19th and let me tell you, it was pretty amazing.  With the CI alone, I could hear like 86% phonemes (Parts of the words) and 60 some% of whole words (in quiet)- my audiologist was quite impressed "tremendous progress" she noted!  With BOTH the hearing aid and the CI I heard  98% of sentences correctly in quiet... "in quiet" means just that- no background noise which isn't entirely realistic but still a HUGE difference from pre-CI!  So quite exciting.  I also have a new setting on my CI to use the phone... I haven't tried it yet- she recommends using it with a landline and call people who I know well (their voice anyway) I don't have a landline- apparently if you have a data plan on your cell phone (which I do) it could mess with the frequencies and all that fun stuff. 

Today I'm setting up my IPOD on my computer to start downloading books from a local library- this should help me with my word recognition- kind of like studying for the collegiate type.

On a semi-side note: There has been a voluntary recall on my implant because 2 people have had shocks, pain and loud noises about 10 days post operation... I'm not concerned about it- I still trust Advanced Bionics and I'm impressed that they are having a voluntary recall after 2 people have had issues, this tells me that they care about ME as a recipient. 

Anyway, thank you ALL for your thoughts, prayers and cards throughout this whole process it's been quite a ride! 


Have a great Thanksgiving and stay safe!

hair flair

Hey friends!

Welcome back... it's been awhile- hope life is treating you well!  No real "big" news today however, I took a big step myself and wore my hair up TWICE this week.  Granted I went to work with my hair down and shortly after lunch I would put it up since I was hot and it was annoying me.  It took some courage to do that, but I just thought to myself "if someone cares enough to comment, I'll care enough to kick their butts"  Just kidding, but really if I got a rude comment, I could send someone to ISS (In School Suspension) yes, I have "some power."  In all actuality, I wouldn't hear if they DID make a comment so really... who cares!?
  I've sample different colors on my processor (purple, green, blue and orange) Purple is BY FAR my favorite!  :) Someday, I'll "skin it" meaning use the website (skinit.com maybe??) and design my very OWN stickers for it- who knows what I'll do... it'll be spur of the moment. 
  Hearing has been going GREAT!  I'm very excited to put it on in the morning and sad to take it off at night.  Wearing only my hearing aid I cannot hear the clicking of the keyboard as I type, if I had my processor on I could- it would probably be an annoyance!
  I go in for another "speech test" appointment (2 hours) in the middle of Nov. sometime, I'm excited!

Have a great short while- 'til we meet again
:)

Jiminy Crickets!

Crickets are quite an annoyance- I've heard them before, don't get me wrong, but seriously- they are pretty constant. Now, in the last few (COLD) days I haven't heard much of them and for that I am thankful!

I went to the Audiologist just over a week ago and had a few tweaks- and it has been AMAZING since then! Before the appt. I was hearing a continuous high squeal which gave me headaches and after... IF I hear a squeal it's a lot more "dull" and more of a background noise! I was SO excited and happy after this appt. and had no one to share this news with and hug (Josh was sleeping, others were at work) that I went to Target and used up a gift card I've kept in my wallet- I felt like a little school girl with a new toy!

I am continually getting used to all the "news" of having a CI- wearing the processor, connecting the magnet, new hairstyles, dead batteries- it's all still very, very new. The next on my "CI to do list" is to listen to an IPOD through a "direct connection" where I plug my IPOD right into my processor (basically my head). My Audiologist warned me that I do NOT have a surge protector and that it should only be used on battery powered things (laptops, portable DVD players, basically anything with a headphone jack). How ridiculous would it be to be using a plugged in laptop and get a sudden jolt in a place I don't want to be jolted! BLECH!

Wearing the processor is slowly but surely becoming more noticeable for me as it's more heavy than my hearing aid was and MUCH more cumbersome. I have also noticed a lot more itching at the scar site and where the device is located under the skin and that get's annoying as when I itch it I typically knock the whole device off the side of my head! I've been looking at a "body worn aid" which would be completely worn OFF the ear, how nice would that be? But I'm not sure where the microphones would sit then if I had that, so I'm just exploring all options!

:) Til next time!

New sounds!

Hello all,

it's been awhile! Hope September has been treating you well with the start to the school year and cooler weather! I have had many ups and downs and twists and turns over the last couple of weeks, my job has started (I teach) and that has helped me learn more sounds! here is a list of some "new" sounds I now have
-crickets (I thought they only made noise at night while sitting around a campfire NOT during the daylight!)
-Ticking of a clock (A "soft tick" as a friend described"
-me typing a text message on my cell phone
-a timer alarm clock
-Jingle of my dogs tags

I haven't heard much of speech sounds yet, but I'm sure that's to come!

My next "mapping" is on the 17th! So I'll get even more "power" to my CI!

No title for this one

Since the surgery/ activation I've noticed I'm a lot more sensitive when it comes to deaf jokes- when I had hearing aids it took me until sophomore/jr year of College to become ok with the jokes- which are funny I do have to admit. so NOW that my hearing in my left ear is completely gone- it's difficult to accept it. I miss out on A LOT more than I did in the past, which is unfortunate as I am such a social person. People have been good to me and very understanding but I can understand their frustrations in having to repeat themselves more than one time.

So there you have it, I'm a lot more sensitive nowadays- a lot more frustrated and moody....

but ALL in ALL I remain optimistic :) This was a good move and I do not regret surgery for a minute!

Activate!

Thursday, August 26 I finally got my device "processor" (or CI from here on out). So I met with the Audiologist and she gave me my whole kit (LOTS of stuff) I got 2 of everything so I have a backup when needed- it's quite the setup and it's taking a bit to get used to.

As for sound, I knew going into this NOT to expect any miracles- and a miracle I did not get. As of now (3 days post activation) I continue to hear a high pitched sound- it's consistent and quite a bit annoying. I still remain optimistic, they say it takes about 6 months to a year to really know if it worked or not.

That's my brief update, next will be more of an emotional one. :D

Post Surgery!

Hey all,

sorry I didn't write any sooner, my computer has this new "thing" it likes to die and be REALLY slow... so I don't like to use it.

Surgery went well, took longer than expected but went very well, I did stay over at the hospital and hardly slept- it's annoying, they make you wear these leg things that puff up to help your circulation, but I'm glad I stayed for the anti nausea meds and such. Recovery is going slow, well I feel better so I guess it's not too slow. Other than a brief trip to the local ER for anti nausea meds and fluids on Friday night/ early Saturday morning I've been lucky, little to no dizziness or ringing in my ears- today I feel headache-y and my ear hurts. I'm able to get up and down the stairs on my own and eat! My appetite is pretty small now and I've lost up to 8 or so pounds but I'm sure I"m gaining that back too so thats GREAT!

So far I've watched 2 seasons of the Big Bang Theory (AWESOME show) and I'm almost through the 3rd season of the Office.

Nap time before bed time!
:)

Reality

So... reality is starting to sink in- and I"m having a lot of anxiety. The typical response is "it'll go just fine" or "thats understandable" but I don't know how to tolerate it other than keeping busy. I picked up hours at my summer job and I'm hitting up school a couple of times this week so I can prepare my classroom and the stuff I NEED at the beginning of the year so the week or so after my surgery I can have NO worries. HA yeah right- I worry all the time, but that's another battle for another time!

Reality REALLY sunk in when I read someone's facebook status on Sunday referring to it being August. WOW. August- really? and then today my lovely cousin and co-worker asked "is your surgery next week" and I said "no it's the 12th... wait... that IS next week" ...super... I'm excited, yet apprehensive. The whole "surgery" thing on my HEAD is causing some "background stress" in my life that is definitely showing through in my everyday life... i.e. I'm crabby. But I try to do my best at covering it up! :)

There's my semi-emotional rant for you!

Finally an Update!

Hey all! Thanks for checking in again!

Yesterday Josh and I spent a good 8.5-9 hours at Mayo Clinic. I had 4 appointments I think so I'll just go through my day- bear (bare?) with me, I just may ramble!

We started off the day leaving home at 6:15am after very little sleep for the both of us! I had the MRI first- all is well in my head, my nerve are intact, the cochlea looks "healthy" so it's all still a go!

I had other appts. where I selected the brand and color of my implant and headpiece- I chose Advanced Bionics- Harmony. Drs. assured me that I could not go wrong in making the CI choice as they recommend all of them equally. The AB's (Advanced Bionics) do not come with a remote but you can change settings manually or have it be automatic. Pros and Cons to all brands. OH and the color- I picked the blackish "charcoal" color- it makes the color accents (Blue, orange, purple, maroon, red, etc.) stand out more and I like that! I can also get stickers made through a website so I can make the device as funky as I want! ....we'll see...

Next I had to NOT eat for awhile and then take a balance test- this was interesting to say the very least... I had to sit in a chair- get strapped in and wear goggles that blocked out all light and had a camera on my eyes. This was about 10 minutes long, the chair spun around (slowly-ish, and rocked a little back and forth- it was to measure my balance system (inner ear). This test showed "some damage to the left ear balance system" ...interesting
Then we went to another room with some minor computer glitches that ended up being resolved- easy test... wore crazy goggles and followed a little red light- what was the most interesting was the WATER TEST... yes they used water- I HAVE to share about this test. First the Aud. sprays hot water into one ear to "stimulate the inner ear" makes you VERY dizzy- and after the spraying is done you have to think outloud- so I counted backwards by 2's, came up with boys names in ABC order and girls names in ABC order as well as counting by 3s or something... anyway- I had to wear darkening goggles again and lay on a table, it was QUITE a sensation. When he sprayed my LEFT ear I didn't really feel dizzy at all, but when he sprayed my RIGHT ear I was CRAZY busy!
-The results of the test told me that I have 87% LESS balance function in my left ear than my right. Basically my whole balance system is reliant on my RIGHT ear. There is no telling when the damage to my balance system occurred but it makes sense that it happened from the meningitis. -I'm not a clutz, I have a damaged balance system!- :D

The last appt. was the "pre-operative" meeting with the Dr. doing the surgery. We talked about how it might be more risky to do the Right ear in the future due to the higher risk of balance issues (any disruptions may make me have a lot of balance issues) so we're sticking with the left ear for sure, and the right ear as a POSSIBILITY in the future but really only if the Left ear implant does not work like it should.

So to make a LONG blog even LONGER... Surgery is August 12th, unknown what time yet as I have to call the night before. Left ear only- Sweet colors.

OH and my "Switch on date" (the day I start actually using the device) is August 26 (and 27th!) so right in time for a good friend's wedding (and the start of the school year)! WOOT!

Thats the update- I like you! Have a good day!

surgery description

This will be pretty basic- from my memory of what my surgery will entail- it could have "wrong information" but it's whats in my head right now... yeah that basic ;)

Getting a Cochlear Implant (CI for short) it's a relatively easy surgery that takes about 1-3 hours and I would be considered an "outpatient," now that's where a large majority of the anxiety sets in, being "put under" when I had my wisdom teeth out and was "under" for 10 minutes I did NOT like the feeling afterwards... or the vomiting or the shakes/ shivers. ANYWAY, the surgery is just a small incision on my scalp just behind and a little up from my left ear- they put the "computer chip" there resting on my skull under the skin, they then put a TEENY TINY electrode (Actually I think there are several on there) into my cochlea which is the size of a pea and resembles a snail shell. I have full trust in the surgeon and am not afraid of the SURGERY part just everything surrounding it. Also, with this surgery there is no guarantee that it'll work well and due to the electrodes into the cochlea it'll damage any residual hearing I actually do have. - so thats a risk I'm willing to take.

Planning=anxiety

Hey all!

The surgery date is set August 12th! I was hoping for sooner to guarantee that I could start back to school on time but on the 12th might be cutting it close. It just may be too overwhelming to re-train my brain to hear in a short amount of time. People have told me that they have great success and can return to some form of normalcy within days of the surgery. Now, I'll be deaf for the recovery period (2-4 weeks) and then I get "switched on" thats where I get completely hooked up- and start re-learning to hear. They say people sound a lot like "mickey mouse" or some mechanical voice, but given time it gets better. I've been told I won't even need to lip read anymore... it's really up to me to give that up though, it's a GREAT evesdropping tool ;)

I've been having a lot of "ups and downs' and of course this all coincides with buying a new house, planning a wedding, GOING THROUGH with the wedding ;) starting a new summer job, then the appointments leading up to the wedding... it's pretty ridiculous- Josh is marrying into my new medical bills- lucky him! So the anxiety is really surrounding the surgery, not the wedding- that will all fall into place even if a lot of people ask me lots of questions that I don't care to answer more than once- that might be the teacher in me. Believe it or not, I've found I have little patience apparently! :) Who'da' thunk it?!

Anyway, that is a little emotional update for you all... :) it's a crazy experience to say the least I'm sure many of you have had made decisions similar to this- it's weird to think that at 24 I need a CI, or hearing aids in general? Isn't hearing loss for "old people?" just kidding. but really that thought has crossed my mind SEVERAL times throughout the years!

The next post will be more about the surgery for those of you who don't know much about it.

OFFICIAL

It's official. I qualify for a Cochlear Implant (CI) for both ears. It was slightly sketchy on whether or not I would qualify due to my testing. Separately my ears are horrible. I scored a 0% word recognition score in my LEFT ear and a 22% in my RIGHT ear, but together I scored about a 50%. but in the end I qualify and to make a long story short, yes I want to get one, yes I'm nervous and excited. I could get it as early as the end of July. How exciting is that? I shouldn't have to miss any work! Be a personal attendant in a wedding towards the end of July, and then be well enough to be a bridesmaid by the end of August and start school soon after that!

My medical evals and things have been through Mayo, I have gotten really excellent care there! :)

Here's a little bit I read from Josh Swiller's writing "Wall of Sound" in the New York Times- (Swiller is Deaf who has a Cochlear Implant)
I read this following Passage and thought "EXACTLY IT" it explains what it's like to rely on lip reading and still only understanding 70% of conversations (without lip-reading I currently understand no more than 35% of words read to me in isolation- a 1:1 setting WITH lip-reading I bet I'm about 50-70% depending on the situation)

"What's 70 percent like? It's hard work. It's always hearing the laughter but rarely catching the joke. One-on-one you can hear pretty well, but big gatherings -- high school parties, say -- are just noise falling on top of noise, like ocean waves in a storm. So you develop techniques to feign understanding, limit embarrassment and somehow stay afloat -- the smile-and-nod, the thoughtful lip purse, the "Oh, I have to talk to that guy; great to see you, though." (I didn't learn until years later that this is how everyone, hearing or not, gets through high school.)"

it's finally put into words for me. *sigh*

to do list update

_XX_ Buy a house
____ Plan a wedding
____ Move out of my parents house
____ Get checked out for a CI (evaluated)
____ start a new summer job
____ freak out over extracurriculars at work
____ end the school year on a positive note

One thing done! *WHEW*

uh oh!

I just got a "huge" bill for going to the audiologist- my insurance I'm sure will reimburse but still... boo bills!

Also, I struggled a bit today- we had meetings this afternoon and there were only about 6 of us there but it was pretty difficult to follow the conversation back and forth- very exhausting. I consider today a "bad hearing day" but I think I'll have more of those from now on as ANY little fluctuation in my hearing (fluid or just a head cold) will be more obvious with my already sensitive hearing.

oh well. Josh and I close on our house tomorrow so optimism will need to remain key! Something I have to tell myself OUTLOUD "Stay positive." Then I listen to Sugarland- "it happens" is my theme song right now. RANDOM.

Learned something

I learned that after having Meningitis (Which I had) can cause "ossification of the cochlea" (hardening of the cochlea) which would make a CI not work well.

But I also read today, that it typically "ossifies" (?) shortly after diagnoses... SO what I"m wondering is if it could START to harden at that time, and slowly continually harden to the point I am at now... which is more deaf...

Learn something new (and disheartening) everyday.

Also, I joined a chatroom for Cochlear Implant users and stuff- hence how I learned this... pretty sweet.

Checklist

Nothing to do REALLY with the CI but here goes...

____ Buy a house
____ Plan a wedding
____ Move out of my parents house
____ Get checked out for a CI (evaluated)
____ start a new summer job
____ freak out over extracurriculars at work
____ end the school year on a positive note

This is my "To Do" list- just about everything on here is STARTED just need to finish ALL of these in the next couple weeks- can you say... STRESS?

#2

Feel free to bookmark me and stalk me all you want- this will be a "no holds barred" (is that even the correct saying?)

Number 1

I'm just testing out the page- ignore this blog :)