DecibelMemos

Perspectives Absent of Sound

2018 Recap

Happy New Year!  I can’t help but look fondly back on 2018…..Here are a few things that stand out: 

We kicked off the year taking a 10-hour flight to the middle of no where – Rarotunga, The Cook Islands. 

Rarotunga – In the middle of the South Pacific

I hate flying and always kept my flights at 4 hours max……so taking a 10-hour flight was really facing my fears, but the long trip was well worth it!  As a matter-of-fact, I think it cured my fear of flying!

In January 2018, I made a commitment to listen to more audio books – not only as a means of ‘ear rehab’, but also to expand my knowledge on different things.  I’m happy to report that I closed out 2018 listening to 22 audio books and too many podcasts to count!  As a result, I’m now a little smarter (haha!) and hearing at 98% word recognition with my bionic ear – AMAZING in such a short period of time!  Speaking of my ear……

Last Spring, I went to Mayo for help with the balance problems I was having after cochlear implant surgery (I shared all of that with you here on my blog).  It was a game changer for me – having a Mayo support team in place got me over the hump and on to brighter days.  Since that time, I’ve transitioned ALL of my healthcare over to Mayo!

I was able to spend my 49th birthday in our newly built home……Need I say more?!  It’s been a lot of fun getting settled and decorating.

In July, I went to my first (what I call) ASL Camp – AZTI – Arizona Total Immersion.   It was a 4-day retreat where you can not speak and only use American Sign Language.  It doesn’t matter what your skill level is, you can participate – mine was at the toddler stage…….you can’t get any lower than that! 

Here we are, the beginners posse – together for every class!
Here’s the whole gang!

Anyway, it was the most uncomfortable 4 days of my entire life!  Everyone that knows me, knows I love to connect with people and not being able to go deep in conversation and really get to know others was truly a struggle – my anxiety was through the roof for those 4 days!  Needless to say, I made it through, but realized I wanted to formally learn ASL – more on that later…..

One very small, brief connection made a way for me to donate my old hearing aids to a lady named Renu, she lives in Nepal.  I’m very happy to report that she is hearing very well with them and we continue to stay in touch on her journey with new hearing aids.

Here is Renu holding my old Phonak hearing aids

I was able to attend my first NASRA (National Association of State Relay Administrators) conference in Bloomington, Minnesota, which will be held here in Phoenix this Fall – I have been recruited to help my boss with planning and also helped at this last conference with set up, etc. (see below)

Went to my first concert in years – Saw Boney James, a spectacular saxophonist who plays some really good jazz!

I can’t forget getting upgraded to VIP seats at Jack Canfield’s One Day to Greatness seminar.  Long story short, I was unable to get accommodated for captioning so they upgraded us to VIP – that was a fun day with my husband and we had lunch with and met Jack Canfield!

I ended the year with getting to meet Derrick Coleman, Deaf NFL football player with the AZ Cardinals.  He’s a super sweet guy and it was great hearing his story and how he overcame many obstacles to get to where he is.

This year (2019) is already taking shape.  As I mentioned earlier, I need to improve on my sign language skills.  As a result, I am starting formal ASL classes in a few weeks……stay tuned on my progress – I’m fortunate to have so many wonderful people to sign with now!

Lastly, I would like to share with you that I’m starting to kick around the idea of getting my second cochlear implant……I know, you probably think I’m crazy after all I went through the first time around, BUT………if you know me, you know I won’t let fear keep me from anything!  Stay tuned…….

10 Months – C.I. “Mapping”

Hello Folks! A quick update on where I’m at. I had my ten month check-in and ‘mapping’ today (mapping = cochlear implant lingo for when they put you in the testing booth to see how your bionic ear is performing). I had pretty amazing test scores last February when I was at the 90-day mark – my speech recognition was at 94%; therefore, I didn’t expect much improvement, BUT to my surprise I did improve to 96%. At this point, in my C.I. journey, it’s about clarity more than volume – how I understand speech is what’s important. What I did find interesting is when we were in the testing booth, we discovered I did not do well understanding male voices, but scored 100% with female voices. Something we will keep an eye on over the coming months with the new programming. It’s all these really fine ‘hearing details’ you don’t think about or realize……For those of you that can hear, APPRECIATE IT!!

When the green light is on, it’s being programmed

I am not excited to be in the testing booth, can you tell?

I would also like to give you an update on where I’m at since going to Mayo Clinic for the the dizziness and balance issues I’m still having. I’ve been told what I have is called PPPD (Persistent Postural-Perceptual Dizziness) – Yeah, I never heard of it either! In a nutshell, PPPD is motion sensitivity triggered from the trauma of the cochlear implant surgery…..I’m not going to mislead you, cochlear implant surgery is quite invasive and as a result, I developed this complex vestibular disorder where your brain becomes hypersensitive to your own movement as well as things moving around you (visual vertigo). I feel intense discomfort in places like supermarkets, moving vehicles or places that have busy patterned surfaces. If you’ve ever been on a cruise and get off the boat, but still have the feeling like you’re on the boat, that is how I feel on a daily basis – a floating feeling. My head feels foggy and I lose my balance easily. I am told I can overcome this and holding on to hope that I will.

Basically, the only thing I can do is to keep pushing through daily life – even when I feel uncomfortable and want to vomit! I have to keep putting myself in those situations so my brain can begin to reset itself. I’ve also been going to vestibular therapy at Mayo Clinic and put in this machine called a Computerized Dynamic Posturography with Immersion Virtual Reality (CDP-IVR). It has been very helpful in determining my triggers and helps the therapist give me exercises to help work through those triggers.

Computerized Dynamic Posturography with Immersion Virtual Reality (CDP-IVR) Machine

As far as the tear (or what they call a fistula), it has not healed yet and I’m told to give it some time – how much time?….I have no idea, but when I move my ear or put my finger in it to clean in and around it, my world spins!…..I can’t go around with a dirty ear – HOW GROSS would that be?!

It is my plan to have the other ear done (once my balance is back on track).  No, I’m not crazy – it’s just, I’M HEARING THAT GOOD (shouting from the rooftops) and I want to hear in stereo!  All dizziness aside, having the cochlear implant has changed my life for the better despite taking on this not so nice part of it.

Lots to catch you up on over the last several months!  Yes, my main focus has been on hearing, but I’m also learning sign language. I went to a 5 day sign language immersion camp – no talking, only sign back in July. I will share that with you in my next post. Stay tuned…..

Taking the Good with the Bad

Yesterday, marked 6 months since the activation of my cochlear implant. To say that it has changed my life is an understatement! It has opened up a new world for me in more ways than one – Let’s just say, sometimes you have to take the good with the bad:

* One of the big changes has been in my ability to understand speech. My speech recognition is so good now that when I talk on the telephone, I no longer need to use captions – That alone has given me so much independence! Before, I relied heavily on my captioned telephone and a captioning app for my mobile phone as well as my husband to return calls for me or listen to messages I couldn’t understand. I am now constantly amazed at how clearly I hear.

* As I mentioned in my previous post, I fell in love with listening to audiobooks…..Now I’m listening to podcasts and a part of my daily routine – While getting ready for work and when I walk the dog, I listen to inspiring podcasts. It just gets my day off to a beautiful start!

* It’s nice to take my implant off and have immediate quiet – silence is something I’ve learned to cherish. As a hearing person, I didn’t understand what real quiet was….Now having the ability to turn it on and off is quite nice.

Some of what I’m working through (and learning to exercise patience with) right now are:

* Having the feeling of being a bobble head, which in turn is throwing my balance off. Right now, I’m in a constant state of “tipsy” from the moment I wake up, until I close my eyes. It gets pretty tiring working through a foggy brain all day long – needless to say, my energy level is depleted by the end of the day.

* I have a tear in my inner ear that gives me some weird vertigo sensations when I touch to clean around my ear or inside of it. Also happens when I belch, yawn, sneeze, etc. – it’s a whole lot of fun with my allergies in full swing too……yea, NOT!

I’m told this is not normal to happen, but comforted to know all of this WILL go away (eventually) – this will not be permanent. Sometimes the body just does some crazy shit and you have to learn patience and give it time to heal.

In the meantime, I’m getting ready to start vestibular rehab, which will help me gain more confidence with my balance.

Would I do it all again?……..YOU BETCHA!

March 8, 2018 – The day I found out about the fistula/tear

New Year, New Ear!

I can’t believe it’s been just over 90 days since my cochlear implant surgery. So much has changed and continues to change with my hearing. At first everybody sounded like Darth Vader. As of today, voices still sound deep, but no longer robotic. I am able to distinguish between male and female voices. I hear sounds in nature (birds, leaves rustling, ocean waves crashing, etc.) so crisp and clear – Actually, it seems better than I remember with excellent hearing! I’m still working on music – I listen to the old school station (songs I know) and I am able to name tunes pretty quickly, but they don’t sound the same…..YET, I have hope!

On the flip side, I am getting used to having a dominant ear, whereas before both ears just sucked – I didn’t have anything to compare to or feel “off” about. Now, my implanted ear is my dominant ear. So much so, I don’t like wearing my new hearing aid for the other ear. I really only wear it to keep the nerve stimulated with sound and it does give me a little boost when I’m talking on the phone or listening to audiobooks.

My sparkly new ReSound hearing aid

Speaking of audiobooks……

If you recall, in my last post, I was just getting back behind the wheel. I decided to make the best use of my time by using the two hour commute (back and forth to work) to do some “ear rehab”. Well, I discovered audiobooks – I am in LOVE with AUDIOBOOKS…….Why?! ……..Because, I CAN FINALLY HEAR THEM! I am close to finishing my 5th audiobook – I started the beginning of January and Yes, I’m so addicted! I never thought I could enjoy something like this. I love reading and never understood how anyone could enjoy hearing a story, but now that I can hear, I GET IT!!

Sporting a Cochlear America head wrap on the beach in the Cook Islands – I have my Kanso on underneath the wrap.  It was great to hear the ocean waves!

We just returned from vacation and I share, in the video link below, all the things I can hear and my progress the last several weeks.

https://photos.app.goo.gl/eBROLZOjJiqKl1zY2

Happy Hearing Everyone!

Six Weeks Post Op

Let me start by saying this journey is surreal! There is no way I could have fathomed all that it has involved physically and emotionally. First, you go through the surgery aspect and you’re recovering from a major surgery (outpatient, but still major – you’re getting your skull drilled!). My energy level was low for a good 3 weeks, my body was healing. All I wanted to do was sleep and hope to wake up with eyeballs aligned. Then there is the activation phase and your acclimating to a new way of hearing and all the energy involved with rehab, which takes a lot of work to get out of (in my case) the robotic hearing stage , which I’m hearing less of every day. I was also hearing a lot of strange sounds coming from my implanted, supposedly ‘deaf ear’ the first week I was activated…..hard to describe, but I swear I heard a full band playing in my head one night! I found myself checking my ear to make sure the processor was off my head because I was hearing like it was still on – pretty freaky! Both surgery and activation have their own emotional aspects to deal with too, BUT……Here are some pretty cool ‘hearing observations’ that have happened since activation three weeks ago:

  • Sitting in a noisy restaurant with my processor on and not getting blown away like I did with hearing aids
  • Hearing a helicopter before I see it
  • Hearing my dog’s nails scrape against the pavement
  • Hearing my husband walk in the front door and yelling, Hello! before even seeing him
  • Listening to my “old school” station and naming the tunes
  • Hearing a co-worker talk outside my office door (I thought they were talking to me, so I responded) – They popped their head in shocked because I heard it.

(these are just a few off the top of my head)

So……today is six weeks post op. I’m on my second day of driving to work and slowly getting my ‘mojo’ back. I am not pushing the process and trying to force tomorrow, rather I’m enjoying a new normal of hearing and looking back at what is becoming a faint memory of eyeballs rolling like slot machines. I realize this struggle is part of my story, the story I am now able to share with you!

First day driving to/from work – 6 weeks post op

Ok, so there were some interesting bus stories the last few weeks!

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