Healer

I've loved the song Healer for a long time. I absolutely believe that God is Jehovah Jireh - the God who heals. Experiencing that in my own life, though, brings a whole new meaning to the song. Today, I sang that in church AND played the guitar. Before my surgeries, I couldn't play the guitar. My guitar sat in my room for years. Now, thanks to my new ears and a great guitar teacher, I am able to stand up in church and proclaim that God IS my healer. He is so good!

I also noticed today that I can hear the pages in our worship binder turning. I suppose that means my right ear is FINALLY healing!:) Actually, I think flying several times over the last few weeks helped a lot. The feedback is greatly reduced and I can leave it on volume 2 at night now. For several weeks, I had to turn it to 0 at night. This healing has been a long time coming, but it's worth it! 

I'm finally going back for more hearing tests on Friday. I'm very nervous, as always. (Megan, if you're reading this, I MISS YOU!!!) The new audiologist is good, too, and very sweet. It's just always scary to see the actual numbers. I know my quality of life is dramatically improved but I want the numbers to show it, too. :). Fortunately, we have a super awesome day planned after the appointment, including a Willie Nelson concert. That's another thing that would not have been fun with hearing aids. Yes, God is good. If you think of it, please keep me in your prayers  on Friday. 

The Negative

The Esteem has been nothing short of miraculous.  It is wonderful and life changing and unbelievable.  I could ramble on for hours about the amazing ways it has affected me for good. 

But I want to be honest on here.  There are some definitely negatives to this experience.  Of course, the expense and the pain of surgery and the adjustment period are big downsides and I expected those.  There have been a few other negatives that I didn't expect, though.  Let's elaborate...

1) Sensory overload - With my first Esteem, I didn't get too much of this.  The adjustment was smooth and healing was fast.  The second go round has been a completely different story.  I think the ear is FINALLY starting to heal and suddenly things are LOUD.  I mean, REALLY LOUD.  I don't have the right Esteem on full volume but some days, it is so loud, I can barely stand it.  Being in Oklahoma this week has set my allergies off like crazy which means some days are good hearing days and some are bad.  Today was a good hearing day........but then we went to a BBQ.  Everything was so loud and overwhelming I wanted to crawl into a hole.  Unfortunately, I only knew a few people there, so I didn't have familiar voices and there was so much noise, I couldn't stand it.  I tried plugging my ears and turning my Esteems down, but nothing worked.  I got a horrible headache within 15 minutes and was actually nauseated just from the sensory overload.  It was NOT fun.  Obviously, when I think about it rationally, I'm amazed that I can hear all of those sounds and that anything can be loud enough for me to feel overwhelmed by sound, but at the time, it was miserable.  I didn't expect that, especially not 7 months after my second surgery.

2) Personality changes and social changes

This one is complicated.  I like studying personalities and knowing my "types."  Before my surgeries, I was VERY introverted.  I thought that was my personality, but it turns out that I found it draining to be around people because HEARING required so much energy.  Now, I'm an ENFJ.  Look it up.  It's totally me.  Adjusting to be extroverted has been really, really hard, though.  I really did not enjoy being around people before my Esteems so I have a very small circle of friends.  Now I want to be around people ALL.THE.TIME but it's hard to make more friends as a grown up.  I also have the social skills of a deaf person.  No offense intended, but it's really challenging to socialize when you can't hear...and it's really hard to overcome that later in life.  Part of being deaf is knowing that you don't really fit in.  You can't hear what people are saying, so you miss out on a lot of conversation and IT SUCKS.  It really was the worst part of hearing loss for me.  I had enough hearing to know I was missing out on something, but felt ostracized most of the time.  It's not because my friends were jerks; I just knew that I couldn't follow the conversations and was always left out.  That's not the case anymore, but learning to make new friendships and overcome the crazy fear of being excluded and rejected has been REALLY, REALLY challenging.  I definitely did not expect overwhelming loneliness to be part of this Esteem journey, but it is.  Before all of this, I needed alone time because people were exhausting.  Now, alone time is lonely and that is just no fun at all. 


Please know that the incredible joy this journey has brought me and the amazing freedom outweigh ALL the negative a million times over.  It's been surreal and magnificent...I read Fancy Nancy today and the adjectives are sticking apparently. :)  I do want to be 100% honest, though.  Lots of people read this from all over the world (which is crazy to me...but welcome, y'all!) and you need to know what you're in for with the Esteem.  It's not all sunshine and roses and smiley faces.  It is the most incredible experience I've ever had, though, and I thank God for this blessing every day.

Freedom

I started this post last week while I was in New York and have soooo much more to add from this week!  Let me preface it by saying this: I got the Esteem for ONE reason.  I wanted the freedom to do things without dealing with hearing aids (water parks, traveling with people, swimming, listening to music in the shower, etc.).  I did not expect to get better hearing than I had with hearing aids (though I did get that).  This post is all about how much freedom the Esteem has given me!

From last week:

As dramatic as it may sound, the Esteem has really given me a new lease on life.  It’s been a 14 months since my first activation and I feel like a completely different person in so many ways.  I’ve always been an active girl, ready to try new things and go new places, but only if I was with someone with whom I felt comfortable.  You see, when you can’t hear, it’s really scary to be somewhere new.  Think about all of the times you have to hear instructions or information.  When I was 14, my family went to Hawaii and we had a BLAST on a tour through the rain forest.  It was awesome, but I would never, ever, ever have been able to go on a group tour without someone I know.  I never wanted to go beach camping because water meant taking my hearing aids out and that was miserable.  The anxiety that comes with not hearing is pretty intense.  Of course, I never realized that was WHY I felt so uncomfortable and scared in new situations without a familiar person.  I thought that was just me. 

            Yesterday, I was in Niagara Falls.  I had been in New York for a conference so I decided to drive over and see the falls.  I had planned on going by myself (that wasn’t scary) but got talked into doing a tour…and LOVED IT.  I was on a bus with 20 people I had never met before and somehow became the social butterfly of the group.  Shocking, right?!?!  I also managed to get hit on by a 60-year-old…those of you who know my tendencies in dating are not surprised by that, I’m sure!  All of that aside, after a few hours of talking to these complete strangers and even posing for pictures with them (really!), it hit me.  I would never have been able to do that before.  What I thought was just a natural shyness was really due to my hearing loss.  My eyes are filling with tears as I type this.  What an amazing gift God has given me!

 Tonight:

This week, I've been in Oklahoma with my darling little Gavyn and Brynna.  I have to upload all of the pictures when I get home and I'll edit this post to show some, but here's the big news: We went to a water park for two days.  We stayed at the Great Wolf Lodge in Dallas, which has a huge indoor water park.  First off, we stayed in a hotel.  That is a crazy experience for me.  How do y'all sleep in hotels when you can't turn your ears down??  It is LOUD!  Next, I stayed in a hotel WITH PEOPLE and didn't have a panic attack once.  I hated being with people overnight when I wore hearing aids.  Once I took them out, I was completely cut off from everyone.  It was miserable.  Now, it's not. :)  Then...the water park!  We spent hours playing in the water, taking silly pictures of ourselves under water and going on water slides.  I got to do it...all of it...and enjoy it.  I wasn't freaking out about not hearing the kids or feeling left out of everything.  It was just normal and fun.  Normal and fun is kinda what I was hoping for. :)

While we were in Dallas, I finally got to meet Ashton, another Esteem recipient.  Believe it or not, I had never met another person who has an Esteem in real life.  I used to be part of a support group on Facebook but left that because of some nastiness toward other people.  It was awesome to finally meet someone!  Of course, Brynna had to be in on the action, so Ashton had more of an adventure than she'd planned for - haha! :)  

This week has been BUSY.  Of course, if you know me, you're not surprised. :)  I like to be on the go constantly.  The big hearing related fun has been our "camp outs."  Gavyn (6) & Brynna (4) want to have camp outs every night.  This was NOT an option when I wore hearing aids.  Needless to say, we've had a camp out every night this week. :)  We pile onto an air mattress or one of their (twin size...) beds and watch movies and giggle until they fall asleep.  I'm supposed to be "camping out" right now but I couldn't sleep.  No one tell Brynna I got out of bed.  She ordered me to stay in bed until she wakes up! :)  

Going to a water park or having sleep-overs with my niece and nephew may not seem like a big deal, but to me, this is HUGE.  I would have been so stressed by both of those things before my surgeries.  It really is the little things in life that matter and the Esteem gives me the freedom to enjoy those little things!

Lately

There isn't much to report, but my whistling ear is keeping me awake, so I figured I would update this. :) I've been having some problems with my new Esteem. It's nothing major but the implant whistles A LOT. It's been doing that for quite a while, but last week, I noticed it was getting worse. After a VERY stressful morning, the wonderful MaryKay at Dr. Shohet's office calmed me down and I plan to see the audiologist next month. I hope the issue is the super slow healing process. I know there's still fluid in the ear, which can push the ear drum against the wires and cause feedback. I hope it's just fluid and not scar tissue. If it is scar tissue, I would need a revision surgery. Obviously, surgery does not sound appealing, mostly because I would have to deal with the awful surgery center again. They are not pleasant folks! 

 The amazing thing is that, even with the difficulties I'm having and the possibility of another surgery, I cannot believe how blessed I am to experience this. Is it perfect? Obviously it is not, but it's incredible. A little (or a lot of) whistling inside my head is a very small price to pay for the ability to hear. Oddly enough, being awake at night because the whistling is worse when in lying down forces me to think about how miraculous this is. Who would have ever thought noise would keep me awake?!?!? I certainly never did. 

God is so good, y'all!

A Whole New World

That's what the Esteem has provided for me - a whole new world!  You can thank me later for having that song stuck in your head now - haha! :)  I've started so many blog posts and never seem to finish them because I just don't know how to put all of this into words.  There have been some pretty major developments in the last few weeks, so I guess I should share!

1) BIG NEWS: Anthem Blue Cross covered my 2nd Esteem at MORE THAN 100%!  There were MAJOR issues with the surgery center and insurance this time around.  The surgery center neglected to fill out the right paperwork then called and demanded $19,400 the night before my surgery.  Seriously.  But, y'all, God is so good.  I had that money saved from the reimbursement the first time.  Normally, I don't have money like that sitting in my savings account, but He provided.  Anyway, when the surgery center filed with insurance they billed for the correct total ($39,000 - SERIOUSLY!) but did NOT use the code for the Esteem device, just for the surgery.  Needless to say, they did not get reimbursed for much....so neither did I.  About a week ago, I got word that they corrected their claim to include the code for the Esteem and Anthem reimbursed the surgery center $21,700 for the device.  Now I just have to get reimbursed from them...which should be fun, considering they still haven't reimbursed me from the first surgery.  I am also still fighting Anthem to cover the surgeon's portion of the surgery, which they did the first time, but not the second.  Good times, y'all!  As stressful as all of this is, BlueCross covered TWO Esteem surgeries in California!  That is groundbreaking!

*Note: I am being VERY open with dollar figures here, which makes me nervous, but there are several potential Esteem patients reading this who need to know details.  If you are a patient and want the codes used, please email me and I will gladly share everything with you!  When I had my first surgery, God provided every step of the way, even when it seemed impossible to me to come up with $30,000.  He IS our provider and sometimes He uses insurance companies. :)*

2) PR: I got a call from my surgeon's office (His office manager is one of my favorite people in the whole world!!!!!) asking if I would be willing to be involved in some publicity for Envoy, the company that makes the Esteem.  Yeah, me.  You can stop laughing now. :)  I am SO not a good speaker and I don't particularly enjoy talking to grown-ups, but God has performed a miracle in my life and if I am given an opportunity to glorify Him, I have to take it.  I also want to get the word out about the Esteem.  It still overwhelms me to think of this incredible change in my life and how it all came about because a girl I went to high school with (Hi, Tori!) watched Good Morning, America one day.  If I can share this incredible opportunity with other people, I will.  The same day that I got confirmation that Anthem covered the device, a representative from Envoy called and now I'm just waiting to hear from the PR firm.  I have no idea what this will entail and I'm kinda scared to death, but I pray that God will use me to glorify Him and to open doors for other people to experience this.

3) New experiences:  After a year of hearing, you'd think that I would run out of new experiences, but that has NOT been the case at all!  Just today, a group from church was working on our float for the Memorial Day parade and one of the guys was joking around with kids in the backyard of the house while I was standing in the garage.  I couldn't understand every word he said, but I got a lot of it.  I didn't think anything of it until a lady said, "Even Jill heard that!"  Little moments like that still amaze me.  I even went on a motorcycle ride two weeks ago!  That would never have been fun for me with hearing aids.  The wind noise would have been unbearable if I'd kept hearing aids in and nothing was fun if I didn't have my hearing aids in.  We rode a motorcycle up to Sequoia National Park and found a great little meadow there.  Standing in this meadow, in the middle of God's beautiful creation, listening to the water in little streams...our God is so good!  Now I'm crying again! :)

4) Healing: My ear is still not healed.  I haven't tested my tympanograms since activation, but I can tell there's improvement because I don't hear fluid in my ear.  I can tell it's not completely healed because the Esteem still whistles a lot.  It is so weird to hear whistling inside my head.  Unfortunately, this whistling usually starts about 4:30 a.m.  It's a very convenient alarm clock, I suppose. :)  I will go back for hearing testing this summer and that should provide more information about the healing process.  It's completely normal to heal slowly.  Even with the diminished quality and the whistling, though, it's 100 times better than a hearing aid ever was.

I know I say it over and over again, but this has been life-changing.  I am a completely different person than I was a year ago.  Life is just so much easier when I don't have to struggle to communicate!

Concerts and Ramblings

It feels odd posting on here now because having two working ears seems normal now. I'm still amazed every day and hope that I never lose that, but it feels natural to hear now. I have had a few "firsts" lately to share! I LOVE music and am very thankful that I can experience music in a whole new way now. I can hear intricate details and distinguish instruments. I can ENJOY music that I used to hate because now I can hear the sounds instead of a roar. It is nothing short of wonderful!! Since my first Esteem was activated, I've wanted to attend a love concert but never had a chance until last week. I was pretty nervous that it would be too loud or I'd be hypersensitive, but at TWO different shows in very different venues, I didn't even have to use my remote! It was soooo much fun to really enjoy a concert. The company wasn't so bad either. ;). After almost a year with one Esteem, I can't believe how different so many experiences are. It's surpassed my greatest dreams.

Lately, I've been thinking about growing up without hearing. I was really fortunate to be able to function with hearing aids, but now I get how awful they are and how much I really did have to struggle. High school would have been a completely different experience if I'd been able to hear. Part of me wishes I'd never had to go through all of the hard things that I did. However, I get to experience a miracle every day. Those of you who know me know that I worry about everything and over analyze everything. It's no fun and it's NOT ok for a Christian. It's always been a struggle for me. This Esteem journey, though, has changed a lot. God made me able to hear. He did that! I never dreamed that would happen but it did! Knowing that helps me trust in other situations. If God can heal me, He can take care of everything else. Being able to see (well, hear haha!) God work like that is so worth every painful hearing related experience I've ever had. He is amazing. I am constantly in awe.

Group work

It's been a while since I've updated this!! Things are going GREAT with both Esteems. The right ear is healing verrrrrrry slowly. It still hurts a lot and some days it whistles, but it is so worth it. I'm amazed EVERY SINGLE DAY. I'll go back for a hearing test this summer. Hopefully by then, the numbers will reflect the incredible difference. Of course, audiograms cant begin to show how much better life is now.

I'm almost done with my special Ed credential now (thank you, Jesus!). I've done most of the work online but am having to take an on campus class right now. It's my first with two working ears. :). Last week was the first class and we had to work in groups the entire time. Pre-Esteem, I despised working in groups. It was so hard to figure out who was talking and then lip read and make sense of everything. But this time, it was easy!!!! A few minutes into class, a guy said, "Ok, we're the fun group. This is our group for the rest of the class!" I GOT TO BE IN THE FUN GROUP!!! It seems silly, but when you're deaf, you can't be fun in a group. It's too hard! For the first time since I started school, I got to have fun doing a group project and I wasn't the weird kid. I cried on the way home. God is so good to me!