Some Potentially Exciting News

I just found out today that my employers will be switching health insurance providers and that as of March I will be covered by United Healthcare. This may not seem like a big deal to many BUT this provider has covered the Esteem surgery for some patients in some states! Which means, that there is a possibility that I could have my other ear implanted without having to be $45,000 in debt.

Although this surgery is a huge risk and I have had some hiccups along the way, I would not think twice before having my other ear implanted. Before, cost had been a concern, but if it is possible that insurance would cover this, it would be such a miracle!! Even if my hearing is just as good as it would be with hearing aids, not having to deal with hearing aids on a daily basis is what makes the whole process so incredibly worth it.

I love being able to have conversations with my husband in the dark, with the lights off, in the middle of the night when neither of us can sleep; I love being able to hear and feel safe at night, when I am driving, when I am swimming; I love the thought of being able to jump into a pool or the ocean without worrying that my hearing aid would get ruined; I love being able to hear while I am showering.

I am just beyond excited at this moment and pray that this will all work out!

Life with One Ear...

... is not fun. I feel uneven. I feel incomplete. I feel null and void. I feel like a large piece of me is missing. The left side of my body feels like a black hole that is going to suck me in. It is like sound cannot be decompressed. It cannot be processed. It comes in through one ear and the pressure just builds and builds until I feel as if my head is going to explode.

My tinnitus is back. I haven't experienced this sensation in over a year! To hear a constant ringing is just plain annoying. It is making it difficult for me to sleep. It makes a lot of things difficult. Like conversation. I cant hear myself speak. I cant even hear myself think for christ sake. This sensation is all-consuming and not in a good way. Once the ringing starts, it is near impossible to make it go away. I try plugging my fingers in my ear to make this horrific noise go away. It won't. As I lay in bed writing this, I wonder if this offbeat symphony will ever go away.

Life with one ear, and not a great one, is just plain awful. I did not expect things to be as hard as they have been. I do not know how on earth I ever did this for 8 weeks after my initial surgery. Looking back, I do not remember it being that bad, which is probably why I thought 2 weeks would be a piece of cake. It's not. It's just plain torture.

I hate not being able to hear well; it makes my heart feel like it is going to explode. I hate that I feel frustrated all the time. I hate that it makes me snappy. I hate that I cannot have a conversation without putting 300% energy into hearing one sentence. I hate that I have to ask "what?" 3 times before hearing something. I hate not being able to hear in the shower. I hate that my night is so silent and dead. I hate that I cannot talk with my husband in bed anymore. I hate that I cant hear the whispers of the wind.


To be completely honest, I think what I really hate is what my life is like without my Esteem. I have spent the last six months focused on the fact that there is a problem and I have put all my energy into finding a solution and just simply being heard. While this energy has been put to good use, I am realizing that I have lost sight of all the positive aspects the Esteem has brought to my life. It gave me hope. It made me believe in miracles. It gave me confidence to challenge myself, to be myself. It brought me out of my shell. It allowed me to, once again, have faith. To open my heart to the world again. It brought back my zest for life. It pushed me on the path to acceptance. 


It changed me.

I must always remember the day my Esteem was turned on. It was the day I became whole again.

Revision Surgery Agenda

Monday, January 21^st

7:45 AM        Lydia Departs from New York

American Airlines

Flight # 59

Depart NEW YORK (JFK) at 7:45 AM

Arrive in SAN FRANCISCO (SFO) at 11:25 AM

11:25 AM      Lydia Arrives in San Francisco

American Airlines

Flight # 59

Depart NEW YORK (JFK) at 7:45 AM

Arrive in SAN FRANCISCO (SFO) at 11:25 AM

11:50 AM      Alex and Fraser Depart from Denver

Southwest Airlines

Flight # 1030

Depart DENVER CO (DEN) at 11:50 AM

Arrive in SAN JOSE CA (SJC) at 1:35 PM

12:30 PM      Lydia Rents Car at San Francisco Airport

1:35 PM        Alex and Fraser Arrive in San Jose

Southwest Airlines

Flight # 1030

Depart DENVER CO (DEN) at 11:50 AM

Arrive in SAN JOSE CA (SJC) at 1:35 PM

2:00 PM        Lydia Picks up Alex and Fraser at the San Jose Airport

2:30 PM        Check-In Hotel

Courtyard San Jose Campbell

655 Creekside Way

Campbell, California 95008

http://www.marriott.com/hotels/travel/sjccc-courtyard-san-jose-campbell/

3:00 PM        Audiogram with Dr. Tucker

6060 Hellyer Avenue #150

San Jose, CA 95138

4:00 PM        Pre-Opt Appointment with Dr. Murray

6060 Hellyer Avenue #150

San Jose, CA 95138

Tuesday, January 22^nd

11:00 AM      Arrive at Surgery Center

Silicon Valley Surgery Center

14601 South Bascom Ave. Ste 100

Los Gatos, CA 95032

12:30 PM      Surgery Scheduled to Begin

5:00 PM        Surgery Ends/Head to Recovery

9:00 PM        Head back to Hotel

Wednesday, January 23^rd

2:45 PM        Post-Op Appointment with Dr. Murray

Thursday, January 24^th

11:00 AM        Hearing Aid Adjustment with Dr. Tucker

Friday, January 25^th

10:00 AM      Check out of Hotel

12:40 PM      Lydia Departs from San Francisco

American Airlines

Flight # 16

Depart NEW YORK (JFK) at 12:40 PM

Arrive in SAN FRANCISCO (SFO) at 9:15 PM

1:10 PM        Alex and Fraser Depart from San Jose

                        Southwest Airlines

Flight # 519

Depart SAN JOSE CA (SJC) at 1:10 PM

Arrive in DENVER CO (DEN) at 4:40 PM

4:10 PM        Jane and David Arrive in Denver

                        Southwest Airlines

                        Flight # 818

                        Depart ST LOUIS MO (STL) at 2:45 PM

                        Arrive in DENVER CO (DEN) at 4:10 PM

4:40 PM        Alex and Fraser Arrive in Denver

Revision Surgery Roadblocks

It has been quite some time since I last blogged and so much has happened during this time. Hopefully this post will fill you in on all of my Esteem happening over the last couple of months...

As I had mentioned in a previous post, I was scheduled to have my revision surgery in October, but after speaking with Dr. Murray in August, we had decided to postpone the surgery to January 2013 in hopes that whatever issues there were with the cement would be resolved by this time. Shortly after this conversation, I was notified that Envoy Medical’s business structure had changed and there was a possibility that the cost of my revision procedure, and any future procedures, would not be covered as I had initially been told.  This was very frightening and upsetting for my husband and I, as these extra costs were not something we had anticipated or budgeted for. I was also worried that I would have to settle with the lack of clarity I had been experiencing. Yes … I could continue my life the way things were and be OK. But, there would always be a part of me that felt like something was missing. That something was not quite right. Like there was more that could be done. During this time I felt like my fate was no longer in my hands and all I could do was wait it out. If I hadn't already done that enough...

The staff at Envoy were very communicative during this time, even though there was not a lot of substantial information that was being shared. All they shared with me was that my “data” would be gathered and reviewed by a Board of Envoy Medical employees as well as Dr. Murray in order to determine if a revision surgery was “deemed fit”.  Those were the exact words used. To be completely honest, these words made me feel like I no longer had someone looking out for me. I didn't even feel like someones patient. I felt like a four-sided piece of paper among a dozen others in a large pile of paperwork.

After a long and torturous month, which seemed like an eternity, I heard from Dr. Murray’s office out of the blue to discuss the results of my “case”. During this conversation, I was first told that Envoy would pay for one full revision surgery (i.e., replacing and/or reconnecting the driver and/or battery) and one scar tissue removal surgery. This was a huge relief. However, any logistical costs, such as hotel, airfare, car rental, etc. would not be covered. While I had suspected this would be the case, all I could think about was how these extra costs would leave a very large hole in my wallet.

We also attempted to come up with a strategic plan for moving forward. Dr. Murray shared that it was very difficult for him to detect the root of the issue without having seen my ear, but from what I had mentioned in regards to the lack of clarity and experiencing distortion, that the issue was likely due to scar tissue. He suggested taking baby steps as we move forward and to start by removing scar tissue. If my hearing did not improve from this procedure, then we would reevaluate the situation and likely move forward with a full revision surgery. He told me to contact his assistant to schedule this procedure once I had some dates in mind.

After speaking with Dr. Murray, I was thrilled that everything was finally moving forward again and I wanted things to happen as soon as possible. As I hung up the phone with Dr. Murray, I rushed to my computer to send Dr. Murray’s assistant an email to let her know I would be there at Dr. Murray's earliest convenience. For a moment, all I could think about was me, my ear, and being able to hear again. Images of what my life had been like before I lost my hearing flashed through my mind. The teenage girl getting in trouble by her parents for spending endless hours talking on the phone, the girl who didn't think twice before answering her phone, the social butterfly who loved to be around others, the girl who didn't care what other people thought of her. The girl I once was. The girl I was starting to find again. The fun-loving girl who was ready for a major comeback.

As I was standing at my desk hovered over my computer, my dog began whining at me, as if to say, “What the heck is wrong with you?”. That is when reality hit. I have a dog to take care of …  I have a house and family … I have a job … I have  R-E-S-P-O-N-S-I-B-I-L-I-T-Y … ugh.  How on earth would I be able to coordinate all these different aspects of my life on such short notice? Oh … That’s right … I wouldn't … Sigh … I had been defeated.

When Dr. Murray’s office didn't hear from me, his assistant, Rebecca  contacted me to see if I had an idea of when I would like to come in for this surgery as Dr. Murray’s schedule was filling up quickly. I told her that with my planned out of office for Thanksgiving and Christmas, and given my expected work for these month, I would probably have to wait until the New Year. She mentioned that Dr. Murray had availability the week of Thanksgiving and proposed that the surgery happen during my already anticipated out of office. GENIUS!! 

I asked her to pencil me in temporarily and that I would give her a definite answer by the end of the week; I had to work this out with my husband and supervisor at work before making a final decision. Thankfully, both my husband and supervisor were supportive of this idea so my husband and I decided to take a detour to San Jose, CA before heading to St. Louis, MO (my hometown) to spend the thanksgiving holiday with my family.

My husband and I arrived in San Jose on Monday morning (November 19th), checked into the hotel, and went straight to my pre-op appointment at Dr. Murray’s office. During the first hour or so of the appointment, I met with an Esteem Engineer (one I had never met nor worked with before) who conducted some technical test on my Esteem as well as hearing tests to examine my pre-surgery gain.

I then met with Dr. Murray to review my test results. Essentially, Dr. Murray conveyed the same thing Melinda had mentioned to me back in June: that my test results have a peak at 1000 Hz and 1500 Hz and that this peak is likely the result of the Esteem Driver not being fully nor properly connected to the Stapes. Additionally, Dr. Murray examined my ear and found scar tissue build up on my ear drum. While it seemed that both issues were present, something we had not anticipated prior to this visit, Dr. Murray shared that he would not know the extent of the issue until he was able to get in there and really take a look. 

So, there I was … in San Jose … miles away from home … planning to take things slow … planning for the best case scenario (just scar tissue) … and … coming out with the worst case scenario (both issues) … leaving with much heavier baggage than I came with.

While we could move forward with the scar tissue removal procedure as planned (and save the full revision surgery for a later date), there is a 50/50 chance that the scar tissue will come back after the full revision surgery. If it did come back, then it would become a cost issue for husband and I. How in the world would we be able to afford this procedure when my two surgeries are up and Envoy is no longer obliged to pay for my future surgical needs?  It is terrifying to think that I have only two chances to get this right. 

Dr. Murray left the room so that my husband and I could contemplate what we wanted to do:

1) Do we do what we came here to do, which would leave the possibility of having to pay out of pocket for an additional scar tissue removal procedure at a later date? 

Or…

2) Do we consider this a "wasted" trip (and wasted money I might add) and come back at a later date so that we are able to potentially save money in the end by having both procedures done at the same time (but only being counted as one of my two procedures)?

As my husband and I were discussing the pro’s and con’s of our choices, Dr. Murray popped his head into the room to let us know that he could move his other appointments around so that I could have both procedures done the next day. My heart lit up.  My initial response was “Um… OK!!!!”

As Dr. Murray looked back and forth between my husband and I, my husband cleared his throat and softly said my name snapping me back to reality. “What about our flight leaving tomorrow? Would you be able to handle flying if you have a bad reaction to the pain and anesthesia again? What about work? Could you handle going back to work next week after having a much more invasive surgery than planned? Also, not being able to hear for 2 months is a lot different than not being able to hear for 2 weeks as you had discussed with your supervisor and co-workers?” Dr. Murray left the room again to let us contemplate this new idea.

My chest began to tighten and my heart filled with disappointment. I hated my husband at this moment for asking me these questions. For asking me to think with my head instead of my heart. For asking me to be realistic. What about me? What about what I want? What about what is best for me? Do I matter anymore? I am so tired of being thrown around. Of waiting and rescheduling and waiting more. I am so sick of having to accommodate to everyone else. I don’t want to prolong the inevitable any more. I want my life back. I want my hearing back. I have been through so much over the last year. When is it my turn to have something good happen? I deserve to choose me. Just this once.

I buried my face in my hands wanting to scream out in anger and frustration. Thinking back on this moment, I am not even sure whom I was truly mad at.

My husband?  For shattering my dreams and asking me to wait when he knows that I want this more than anything in the world.

Dr. Murray?  For having me come all the way out here and waste my time, vacation, and money to tell me something I was already told in June.

God? For testing my patience and making me wait. There better be a damn good reason he keeps putting this off! It is not fair that I hear of so many other peoples effortless success while I keep hitting roadblock after roadblock.

Myself? For not being able to fully accept myself as an individual with hearing loss and wanting so badly for the chance to hear again that I would so selfishly drop everything in my life for this.

All of the above?  Yes, all of the above.

When I finally lowered my hands from my face, I looked up, directly in my husbands eyes and said, “I … hate … you” because I knew he was right and I hated him for being right. My husband and I sat in silence until Dr. Murray reappeared and I told him that “we” decided to wait. That day, I blamed my husband for the decision we both knew in our hearts was the best one because, well, sometimes we just need someone to blame to help provide reason for the unfortunate things that happen in our lives.

I may have lost this battle, but I will keep fighting until I win this war. I truly believe with all my heart that everything happens for a reason, and that God has a plan for each and every one of us. There is a valuable life lesson that can be taken from each and every one of these setbacks and while I may not know what that is right now, the personal growth I have gained from this experience has already made the ride well worth it and I look forward to the 2nd phase of this journey to begin after my revision surgery ... January 22nd!!

Future Changes to the Business Model at Envoy Medical

It was recently brought to my attention that the the business model at Envoy Medical, the company that created the Esteem hearing implant I have in my left ear, has changed. Just to give you a little background (if you are not already familiar), prior to this change, patients went through Envoy Medical in order to connect with a surgeon and obtain the Esteem implant. At the beginning of the process, you would be assigned to a Envoy representative who would then be your point person for questions about the implant as well as figuring out payment plans and filling out necessary paperwork. When I went through this initial process during the summer of 2011, I spoke to my surgeon, Dr. Marzo (the surgeon in Chicago), once before surgery, and I was not able to speak with him until I had paid my surgeon fee and set a surgery date. Almost all of my initial contact was with my Envoy Representative. Currently, there are ~13 surgeons whom are able to perform this surgery across only ~13 locations across the United States. Therefore, it was part of Envoy's procedure to fly their Engineer's to a patient's location for activation as well as any subsequent adjustments down the road.  Since surgery almost a year ago, almost all of my contact has been with an Envoy Engineer. 

However, I found out that after a certain time frame, Esteem patients will be getting their Esteem through surgeons instead of Envoy Medical. Envoy will no longer be sending their engineers to remote areas for their Esteem adjustments.  The future goal is to have Esteem trained audiologists in many different areas throughout the US  so that it will be more convenient for patients; however, I was told that it would take a while (at least a couple of months) to reach this goal. I was also told that at the present time, while the new procedures are put in place, current Esteem patients will have to travel to their implanting surgeon site or surgery center  for their adjustments. 

The changes that Envoy is undergoing makes perfect sense to me. These changes will make connecting with the Esteem implant much easier and less tedious for patients since we can connect with a surgeon directly instead of having to go through Envoy to ask questions, determine our eligibility, and make payments. Additionally,  I can only imagine the resources that will be saved by not having Esteem Engineers fly across the globe to make adjustments. Hopefully, these resources can and will be used for research/credibility and making the Esteem device more effective, especially for those with profound hearing loss.

While I agree with the changes that Envoy is making, I have to admit that I am a bit concerned about what this means, financially, for my future revision surgery(ies). I was told that it has not been clearly defined yet how to handle patients that are experiencing issues with their Esteem device.  All patients that are currently experiencing an issue will be reviewed by the Envoy management team and engineers as well as my new surgeon, Dr. Murray. It is then up to Dr. Murray to decide how to move forward with my Esteem device issues. Payment for the revision procedure and expenses have also not yet been defined. 

What scares me is that it is possible that under this new business structure, my revision surgery and the expenses that go along with it (hotel, car rental, etc.) will not be cover by Envoy under their new structure. I have been through the process once and it is definitely NOT cheap! I just keep thinking to myself, how on earth am I going to be able to afford the costs of a revision surgery? The issues with my Esteem are outside of my control and there is nothing I could have done to prevent this disconnect of the driver from the Stapes.  I have also done so much extra work, specifically around aural rehabilitation, to make sure that I am, personally, doing everything I can to get the most from the Esteem. I know I took a huge leap of faith going into this surgery and I feel like a 2 year old saying this (so, excuse my pity party moment), but it just does not seem fair. Ugh. I feel upset. angry. frustrated. impatient. confused. I feel so many emotions, I do not even know what I feel (if that makes any sense at all). 

I think the worst thing for me right now is just not knowing what the financial aspects of the revision surgery will look like and not being able to see a clear picture of my future with the Esteem. I love the Esteem and it has changed my life in more ways than I could have imagined. I love it! However, it is hard knowing that it has the potential to get even better and that one day, I may not have to consider myself as hearing impaired anymore. There is one thing that I hate more than waiting and that is things that are outside of my reach. If Envoy does not cover my revision expenses, then this dream is out of reach for me. But I am a fighter and this is just another uphill battle that I will have to overcome. I may not see the benefit of Gods path for me now, but I know that one day, I will look back at these struggles and thank God for giving them to me. I will never let these hard times define me or my life but instead strengthen me to my core and give me the gift of patience. 

Life is YOUR Choice

I have to say that the last year of my life has been quite a struggle. Hell, the last 6 month in itself of learning to hear again has been a spiraling journey of ups and downs. There are days that I feel on top of the world and others that make me want to just give up on this journey all together. While my implant has given me hope and improved my hearing on so many levels (and hopefully many more to come!), I do still have my "I cant hear very well" days where everything seems a blur. 

Sometimes when things do not seem to go right in our lives, we attribute our feelings to the situations in our life. And rightfully so... We wouldn't have to deal with the situation at all if life didn't throw it at us while we weren't even looking, right? While we may not be able to choose our life circumstances or how we initially feel about certain things that happen in our life, we DO have a choice about how we react to these unforeseen situations and how we let them affect how we live our lives and our overall happiness. 

Obviously, feeling sad, frustrated, angry, or depressed doesn’t feel good, so when it comes down to it, we have to ask ourselves, is it worth it? Is it so important that it is worth holding onto this negative energy? Letting it ruin your day? Letting it make you feel upset? No, it is certainly not! 

Yes, it is frustrating that I have to wake up every morning as a hearing impaired individual and go through my day wondering if I will be able to hear people or not. Yes, it is not fair that I have to live with a hearing disability, while I see friends my age being able to so effortlessly and happily live their life. I hate more than anything that it is difficult for me to keep in touch with and communicate with my loved ones. Sometimes I get SO mad at God when things get difficult. Why me?

However, what I have learned is that by holding onto this negative energy, the only person you are hurting is yourself. By being jealous of someone else's life or by being frustrated when you cannot hear someone, you are only hurting YOU! These feelings are truly a waste of energy that could be used to feel good about something. So, stop honing in on the negative, and boost up all the positive things that are happening in your life right now!

Always keep in mind that while you cannot control the crappy life circumstances that are thrown at you, you can control the level you take it too. If you take the time to explore whatever it is you are feeling, you will be able to better understand yourself, which will make it easier to learn from and let go of the negative experience that may be holding you back. With hardship comes growth, but only if we take the opportunity to learn from lifes' happenings. By focusing on the lesson instead of the struggle, we are bound to become wiser and happier individuals...

Life Since Adjustment

Since my adjustment in December, things got off to a slow start due to being sick and the fluids in my ear, but for the last couple of weeks, things have been getting progressively better! I thought I would take a moment to reflect on how things have generally been going since my readjustment.


Until about 3 weeks ago, I was not able to turn my volume past 7. Every time I tried, I would get high pitched feedback. However, in the last 3 weeks I have been able to make it all the way up to volume 10 and I have to say I am LOVING the volume gain (I want even more!) and cannot express what a difference it makes! After going a month without being able to change the settings, I never thought that I would actually make it to this level! This is very exciting not only because of the volume gain I am getting but also because it means that I am healing and the fluids are starting to drain!


I found that I spend most of my time on the "A" profile, which is considered my "Everyday" setting. I have tried the other settings but this is the most comfortable for me in almost all situations. I am not really crazy about my "C" profile ("Music/TV Watching" setting). I feel like the sound of swallowing is so distracting it is difficult to focus on anything else. When I am on this profile I feel like my ears are going to explode. I have this weird ear popping sensation. It is almost like there is too much base which is making my ear feel lots of pressure. I have not been out too much in the last month, but my "B" profile (i.e., background noise setting) has been pretty great! I found that it works better at bars/clubs where the the loud noise is more constant than when out to dinner at a restaurant. I have actually preferred to stay on the A setting when I am out to eat.


I found that I am finally starting to gain some of the distant noises I have been wanting. I actually attended a lecture for work which took place in a large classroom. I was seated towards the back right and heard every word except when I was thinking about how surprised I was to actually be hearing!  So, I guess I missed a few parts but more of an attention issue than a hearing issue. However, this is still not "perfect". At the end of the lecture, there was Q and A. I did have trouble understanding other peoples' questions. It is weird that some voices can sound so loud, while others are too quiet. I wonder if something like this can be addressed in my next adjustment or if this is just the nature of speech?

Since my readjustment, I feel that I take much more notice to the sound of walking. Shoes hitting the floor. Legs rubbing together. I feel like I make such a commotion when I am walking around my office that it makes me want to tiptoe sometimes. Since our production room is right by my office, I have found myself very distracted by the sound of the printer. I often get so distracted that I have to close my door. Also, I noticed that the heat vents in my office make a squeaky noise when they are on and running. Not to say that I am not grateful but it is crazy how I never noticed this before because it can be quite annoying...

I feel like the dishwasher in our home gets increasingly loud every time I turn up my Esteem device. Being on volume 10, I found the dishwasher so loud that one time, I started yelling at my husband to stop using his electric saw in the basement. I was so confused! The sound was so loud that I thought it sounded like someone using heavy machinery. haha. 

I haven't been able to wear sun glasses for almost 6 months since the side of my head is still a bit tender when I put pressure against it. When I tried them out this week, I realized that it doesn't hurt anymore!

Well, that is all I can think of at the moment! 

A Survival Guide for New Deafies! (GREAT BOOK)

My husband got me a Kindle for Christmas and I found the most amazing book! It is called A Survival Guide for New Deafies! and is specifically written for people who suffer from late on-set hearing loss, LIKE ME!

It is a short book (only 39 pages) and took me about 30 minutes to read. It is one of those books that I will read over and over again whenever I am feeling down about myself or am unable to hear something; very inspiring. If you are suffering from hearing loss and are having a difficult time accepting it as your reality, then I definitely suggest you read this. It is also a great book for family and friends of Deafies to read so that they can understand the struggle we face and how to react to your situation.

Here are the "rules" that are outlined in this book:

• Always have a sense of humor about your hearing loss
• Never Apologize for being a Deafie! NEVER!
• Be honst about your new Deafie status to old and new friends, family, and associates 
• Learn all modes of communication
• Stay social!
• Understand your hearing loss
• Allow for only small moments of self pity!!
• Beware of non-believers

Just thought I would share this piece of inspiration to anyone out there struggling with hearing loss! :)

Road Trip To St. Louis

Fraser and I are spending the Christmas holiday with my family in St. Louis! 


We were planning to leave last night, but a huge snowstorm hit Kansas and parts of I-70 were closed so we decided it would be best to wait until today to start driving. I am glad that we decided to drive instead of fly because I heard that DIA (Denver International Airport) was PACKED and many flights were delayed. Nothing like spending 8 hours in the airport waiting for your flight to take off (yes, this has actually happened to me). 


Many people hate traveling by car, but I have come to love it! Growing up as a kid, my family drove everywhere when we went on vacation and, while it was not always the most pleasant experience, some of my favorite moments from childhood are from our family road trips. I think our longest drive was from St. Louis to Fort Lauderdale (~24 hours if I remember correctly), besides our family trip to visit colleges during the summer between my sisters Junior and Senior year of high school, which was a 10 day trip through the Midwest, up to New York, and down through most of the east coast. Many “Griswald” memories… Anyways, I was very excited for our road trip to St. Louis.

When we woke up this morning, my ears were hurting and kept feeling like they needed to pop. I kept holding my nose while swallowing but it just didn’t seem to do the trick. I had not taken my allergy medicine in almost a week so we had to take a little detour this morning to find a Walgreens that was open at 6:00 am!


I decided to take the first shift of driving because I was so excited to just listen to music with the open road in front of me. When I drove home from work yesterday, music on the radio sounded AMAZING! SO much different than it had sounded in the last two months. I didn’t experience any distortion and I was able to actually hear the different instruments. I was also able to hear the words well enough to later find the songs on itunes to download them for our road trip. However, driving on the highway while listening to music was quite different for me.

First of all, I was so overwhelmed by all of noises a car makes. Before my re-adjustment appointment, the sound of driving a car was mostly just a loud muffled noise. When I was driving today, I noticed that a car makes a different noise as you drive over different parts of the highway. Also, in certain parts I heard this constant “clunk-clunk”, which sounded almost like a horse galloping. I actually remember as a kid not being able to sleep in the car because I was so distracted by this on some parts of the highway. I would even sing songs in my head to the beat of this noise. I also took notice to the sounds that the car makes when it accelerates. It is weird how I never really noticed these little things before.

So, these car noises were a bit overwhelming for me and interfered with the sound of the music. It took a good 2 hours of trial and error to find the programming that would take away the background noise but also allow me to hear the music clearly. I think I tried each and every volume on each and every program setting. I also tried this in conjunction with adjusting the car stereo. 


My husband woke up while I was in the middle of trying to figure this out and told me that the quality of the music I have been downloading is really bad. It made me feel better knowing that it sounded a little crackly to him as well, but it is weird that I never noticed how poor the quality of my music was. Maybe that is why it sounded so bad before? It wasn’t until he plugged in his ipod that things sounded a bit more comfortable. Unfortunately, his ipod has thousands of songs and it is so difficult to sort through and find the ones I actually like!

I feel like each of my 3 program settings have their plus’s and minus's when it comes to listening to music, but none of them sounded “perfect” (if that is even possible). I feel like the programming that sounded the best for one song, was not always true for the next song. I found what worked best for me and produced the least amount of distortion was if I had my Esteem set lower and the volume in the car set higher. If I turned my Esteem past volume 3 on any of the programming, I would experience crackling distortion. What I found interesting was that when I did increase the volume past 3, the actual instrumentals sounded great, loud, and clear. It seemed that the voice of the singer or the cheering in the background (from albums recorded live from concerts) was what produced the distortion. So, after many hours of trying, I found C3 to be the “best” setting. While the noises of the car were a bit louder than I would have liked, I think the music sounded the clearest at this setting. 


I did talk to my husband about this and he said that when you are driving on the highway, it is just loud. That is the way it is. He explained that the noisiness of the car is what he hears too which is why he has to increase the volume so that he can hear it over the loud noises of the car. He also explained to me that more “basey” bands or singers with deeper voices are more difficult to hear since the sound of the car drowns out the music so he also has to adjust the volume depending on type of music he is listening to.

What I found to be pretty amazing is that songs were much easier for me to identify. Before my Esteem, it would take me at least 30 seconds to identify a song that was being played. I would first have to turn it very loud so that I could actually hear what the song was, and once I identified it, I would be able turn it down and then follow along more easily. So, I feel like I am actually hearing the music much better than I ever did before.

Right now, Fras is driving and listening to talk radio. This, for some reason, is not as clear on C3. I find that listening to talk radio and talking in the car is much easier on my “Background” settings. I found B7 to be the easiest for me to comprehend what was being said, of course when I put the effort in to do so.

I also want to mention one of the few benefits of having a disability. It can get you out of speeding tickets. I was a little speed demon when I was driving earlier today and got pulled over. With all of the cars flying by, I wasn’t able hear what the officers was saying so I kindly explained to him that I am hearing impaired, just got surgery, and was having a difficult time hearing him and asked if he could speak up. We started talking to him about the surgery and our plans for the holiday as I tired to find my license and registration. He went to his car and came back a minute later with a warning. Score! This is actually the third time I have played the "hearing impaired" card and gotten out of a ticket.

Hearing Test Results From First Adjustment

As I mentioned in my last post, I completed a hearing test during my re-adjustment appointment. This is probably one of my least favorite things in the world. I mean who likes to be tested and scored on something you know you are not very good at! Well, I received my test results today and I have to say that I am very disappointed with my scores and feel like I am hearing a lot more than what is showing up in this test. 


Before the implant, I had severe to profound hearing loss (in the lower and high ranges, respectively). My test is showing only a 5 decibel improvement with my Esteem, with the greatest improvement at 15,000Hz (80 to 30 decibels). I also had requested my hearing test from the day of my activation, and, at most frequencies, my hearing was, on average, 5 decibels better than my recent test. My test scores went down from my activation to my readjustment. Also, my Esteem scores are about 5-10 decibels less than my hearing aided scores. 


It really broke my heart when I saw these tests. I told my husband this and he was shocked as well and felt that he has noticed such a difference in my hearing and speech. I am feeling very concerned about this lack of improvement and am hoping that it has something to do with my cold instead of something more serious. I emailed my Technician about this to see if she could offer any explanation. 

Additionally, my word understanding increased from 68% to 76%. I was told that patients typically increases about 10-15% at this stage in the process and I am below that average with an 8% increase. I am not trying to justify anything, but I do feel like it is difficult to really detect an accurate account of differences when my pre-test took place in Denver, in which the audiologist said the word, and the test today used a recorded voice. When I was tested in St. Louis just 3 months before my test in Denver, my word understanding was 20%. I think this was so low because they used a recording of a female with a high pitch voice. So I am not going to let myself get too discouraged about this, as I will have a more accurate comparison when I am tested at my next readjustment appointment. 


While I am trying to stay positive about this (the situations is what it is), I am a bit concerned and will feel much better once I hear what the Envoy Technician has to say about this. More details to come...

Head Cold and Feedback From My Esteem

Most of the feedback and distortion I have experienced with my Esteem has sounded oceany or like a crackling noise. Up until last week, I had only experienced the high pitched screeching feedback twice. However, I have only heard this on the highest profile setting (C5) and it has never been constant. The first time I heard this type of feedback was about a week before Thanksgiving when I got out of the shower and wrapped my hair in a towel. My ear was folded within my towel when this happened so, once I adjusted the position of my ear the feedback went away. Just to be safe, I changed my programming to C4 that evening. I wonder if having water in my ear caused this feedback?

The night of Thanksgiving is when I heard this high-pitched feedback again. I had spent a long day at work (yes, work!) in effort to save my holiday time for Christmas and we had spent the evening with Frasers’ parents cooking and eating dinner, so I was pretty exhausted that evening. Fraser collapsed in bed and I jumped in bed on top of him, laying my head on chest. This was when I heard the squeaky high-pitched feedback for the second time. I looked at Fraser and asked him if he heard it too. He seemed puzzled as to what I was talking about. As a joke, my husband calls my hearing aids my “squeakers” because every time I try to cuddle with him and lay in his nook, they would produce a loud screeching feedback that he could actually hear.  I guess he cannot hear feedback from my Esteem!

Throughout my life, even as a young child, I have always experienced seasonal allergies but since my surgery, my head congestion has been a bit out of control. I have been coughing up some questionable mucus and just feel like I have a permanent sinus infection. Interestingly, I have not actually felt sick. I was told by Dr. Marzo that I should expect to have some head congestion for the next couple of months and that taking an over the counter decongestant should help reduce the amount of fluids and make this a bit more manageable. During my activation, I was told that head congestion or having a cold may make it more difficult to hear, as it would when a person with normal hearing has a cold. I was also told that having a cold produces fluids in your ear which could also cause feedback. Throughout the last couple of month I have been taking Zyertec D pretty consistently and have found that this does have an effect on how well I am able to hear. I am generally able to hear much better when it is in my system.

Towards the end of November, I saw my doctor for a check-up and told her what I was experiencing. She put me on an antibiotic for 10 days but that didn’t really seem to do the trick. For the last week, I have been experiencing the high-pitched screeching feedback every time I blow my nose. Basically, my ear would pop while blowing my nose and I would experience this feedback until I swallowed and my ear had un-popped. This was even happening when I went down to C3. When my ears popped, it sort of hurt. The pain was not unbearable but it definitely didn’t feel good! I have only had one ear infection in my entire life and I just remember my ear popping and it feeling similar to this.

So, basically I have been experiencing the signs of a cold for the last month but I did not actually start feeling sick until this weekend. When I woke up yesterday, my nose was so stuffed up I could barely breath, my glands were so swollen I couldn’t even talk, and I was coughing up some questionable mucus. I spent most of the day sleeping, which my puppy Rufus did not like.  He kept sneaking into the bedroom with his ball, trying desperately do play fetch with me. At one point, he dropped his ball underneath the bed and started whimpering because he couldn’t get it. I stuck my head underneath the bed so I could grab his ball and my ear started screeching with the high-pitched feedback but this time it did not stop. I had to turn my ear down in order to get this feedback to go away. Something was definitely not right.

First thing this morning, Fraser called the doctor and made an appointment for me. She said I have an ear and sinus infection (boo!) and put me on the Z-pack, steroids, a decongestant, and cough syrup so I hope to get this cold out of my system before my readjustment appointment next week. I am very concerned that this will impact my appointment and I pray to God that everything will work out for the best.

Thinking Too Much

I wonder what sounds I am not hearing, but do not know I am not hearing because I have no one there to tell me of that sound. Also, others may not think twice of a noise so they may not outwardly say it so I wouldn’t know to listen for a noise. I think this may have something to do with my ADHD but sometimes I will not hear something until it is brought to my attention by someone. Then, when I focus on the noise I am able to hear it. Thinking about this I wondering if I am actually hearing it or if it is just a memory of that sound. I think I am thinking too much and need to go to bed…

Hearing Aids In The Shower

The weirdest thing has been happening to me recently. I am still not 100% used to hearing different sounds so every time I get into the shower, I start to freak out when I hear all of the noises of the shower. I scramble to pull my hearing aid out and then realize that I do not have my hearing aid in. There is nothing to "take out" because I am hearing this out of my "real" ear. I am hearing with my Esteem! There used to be so many occasions when I would forget to take my hearing aids out when I got in the shower and would realize 30 seconds after that they were still in. I would frantically scream for Fraser to come get them and put them in my dry box. I am actually surprised my hearing aids are still working…I am so thankful that I no longer have to worry about this happening!

Last Day of Filming for the Oprah Network

The film crew from the Oprah Network came back for our last day of filming. It was the same crew except for the producer. Madeleine was not able to make it :( so they flew in a producer from LA. She was great, and Fras and I really enjoyed spending time with and getting to know her. The crew arrived at our house at 8am and had a full day of filming scheduled for us!

First on the agenda was City Park. I had actually never been here before so I was very excited to go and “experience sounds” here. As we were walking into the park, the first thing I heard was my footsteps among the leaves. This was not a new sound for me to hear, but I swear, the more I hear certain noises the more crisp and clear the sound becomes. Also, the more I hear different sounds, the easier it is for me to identify and differentiate between sounds. 


City park is near the zoo and there was a Whooping Crane that was very noisy on this Sunday morning. While walking, I kept hearing this bird in conjunction with children on the playground. Both of the noises were sharp and high pitch. I had a very difficult time telling the difference between these two noises when we first arrived at the park. As we made our way to the playground, there were three little girls singing as they were swinging on the swings. I could not make out what they were singing until I asked Fraser. He told me they were counting and he started to count with them, whispering under his breath. I followed Fraser's counting and matched it to the counting of the little girls. That was when I actually understood, for myself, what exactly they were singing. I wonder why I was not able to understand what they singing on my own. How was I able to understand this after Fraser had told me? When will I learn to hear, identify, and understand this on my own? Although I was not able to pick up on what they were singing right away, I was able to differentiate between when the were singing compared to when they were just simply chatting. 


The most memorable part of this experience for me was hearing a child's laughter. There is something about the innocence of children that relaxes me and puts a big smile on my face. Childhood. Everything was an exciting adventure. So much hope. So much to look forward too. For the first time in 9 years, I feel like I can relate. My lifelong dream has been to work with children, but because of my hearing loss it became very difficult for me communicate with them since their voices are so high pitch. What I experienced in the park today has really inspired me to work with kids again. It is so easy to forget what you are missing out on when you have avoided it for so many years. 

Our next stop was The Denver Zoo. We had our own escort and had VIP access to see the Coo Coo bird. This bird was ridiculously loud and really could drive someone "Coo Coo". They had Fraser and I wait outside while they got the bird ready and “vocal”. I remember waiting outside the room and thinking to myself, "What the heck is going on in there? Is this bird being slaughtered?” That’s how loud and alarming this sound was. 


When we first walked into the room, it all just seemed like one big noise to me and was causing a little feedback with my ear. However, the longer we stayed in there, the more natural the noise became and the more I was able to hear all of the different levels of the Coo Coo birds' screams. I think before my implant this noise would have seemed like one big blob of sound, but it was amazing that I was able to hear and differentiate among the different squawking calls this bird made. The bird was so loud though that it made me want to cringe at some times. It was almost painful. Not painful like it would be if you got pinched but a different kind of pain that is too difficult to explain. This is a pain I don’t think I have ever experienced. It was almost a good pain to know that my ears now have the capacity to hear something like this. That sound is actually too loud for me instead of me struggling to hear. My adrenalin was rushing and my heart was beating a mile a minute the entire time we spent with the bird. The feeling I was experiencing was overwhelming but in a good way. The producer noticed my reaction to all of this and did a quick interview afterward but I was so BAHHH excited and giddy and shaky. This was not like anything I had experience yet!


Our next stop was the monkey house, as we had been told that the monkeys have been "vocal" recently. However, there was not much activity and the only thing I did hear was the “choo choo” of the train and the “ding ding ding” of the bell at the train station behind us. Fraser cracked a joke about how I ALWAYS want to ride the train everytime we are at the zoo and the film crew decided it was time to finally fulfill this desire! We road around once and the sound of the train moving on the tracks overwhelmed my ears and, because of that, I was not able to hear much else besides the whistle and bell of the train. Throughout the entire ride, the conductor was talking and although I was able to hear him loud and clear, I was not able to make out what he was saying. After we road around, the film crew asked the conductor if they could get some shots of the bell and the train whistle. I decided this was too much fun for me to miss out on so I asked if I could be the one who actually did the "ringing" and "tooting".  I don’t think the zoo would have let me do this on any other day so I took advantage of this and just had fun with it! 


We ate some lunch and then fed the Lorikeets. Again, FREE access and food for the birds! I placed my hand near one of the birds and it jumped right onto my hand and started eating the nector! I have never experienced anything like this so this was pretty cool. I think I was so distracted with this that I really did not take notice to the sounds I was hearing. I heard the birds chirping but the noise was very faint. The sound of others talking around me was what I heard the most. After this we decided to call it quits and move on to the next activity.

After the zoo we went to a music store. I have to say that this was probably, by far, the most awkward of all the filming that we did because I have absolutely NO musical talent. When we first walked in, Fras and I started to play with some little noise makers. We got into a little groove and “crack!”. I broke one of the instruments! I felt SO awful about this. Of course this happens to me… on camera! After my embarrassing moment, I moved on to something that was a little harder to break… windchimes. I LOVED this noise! It is so peaceful. Probably my second favorite sound besides water. I can't remember the last time I heard this, but Fraser mentioned to me that his family has wind chimes at their house in Naples and Aspen, and in the 4 years we have been going there, I have not noticed this noise once! What a beautiful sound that I have been missing out on.


I was then filmed playing around on the piano. I had actually taken piano lessons as a kid, but my mind went blank on what to play so I was just sitting there, tapping random keys. I kept thinking to myself "doo doo doo. This is so awkward". I tried to break this awkward moment by sliding my fingers all the way down the piano in one swift motion! I had everyone laughing after that and that is when I decided to be done with the piano. I then went on to play the drums and was asked to describe the sounds I was hearing. This was very difficult for me because how does one really explain sound? The way I see sound is that either I love it, I hate it, or just don't take notice to it. It is hard to explain why something sounds good or bad. It just does. Also, I must say that I don’t like how any instrument sounds when I play it but when I was able to hear the store owner play, it was glorious. I was able to pick out 3 different string instruments for him to play and I picked the mandalin, violin, and banjo. I loved them all but my favorite was the banjo. Not sure if this is because of my midwestern roots or because of my favorite episode of Family Guy when Stewie plays the banjo ("I got blisters on me fingers!"). Before we left, the store had invited us to attend the children's music recital. We still had one more thing to do, so we were only able to stay for the first couple of songs but it was breathtaking. Live music is incredible! This kids were amazingly talented!


What I realized about my experience at the music store today was just how much I miss music. I have mentioned this before, but I have always loved music. I never had the musical talent, but I loved everything about the way it sounded. I especially loved classical music and would sometimes pretend I was the conductor of the symphony, acknowledging each instrument. I have always loved musicals as well. I cannot even tell you how many nights my mom and I would spend watching old movies, singing and dancing to the music. Also, during the summer my family would go to outdoor musicals at the St. Louis Muny. However, in the last couple of year music just hasn’t sounded very clear to me so I just stopped listening to it. Hearing all of these different instruments today made me realize how much I am missing out on and has inspired me to bring music back into my life.

Our last stop of the day was Wash Park Grill. Fras and I were EXHAUSTED at this point but were excited to finally spend a nice romantic dinner together which was a bit difficult to do with a camera and bright lights in your face. I was a bit nervous about dinner because this restaurant is very dark and noisy, and has been challenging for me in the past. However, tonight was almost effortless and I was also able to hear so some new noises I never noticed before my implant. I heard the clinking of our glasses. I heard the sound of the knife rubbing against the plate as Fras was cutting his food. I was able to have a conversation with Fraser while chewing and not looking at him. 


Today was pretty darn amazing and was the perfect end to my week. I left work on Friday feeling discouraged about everything but today was really fun and boosted my confidence in my future of hearing. 

Sounds of the Mall

Today at work I had to attend another Webinar training. I had such high hopes that attending meetings at work would be easier for me, but the last training I attended left me feeling hopeless. I am happy to report that the quality of the sound ended up being much clearer than the first time which made the training much easier to follow. However, I was probably only understanding about 50% of what was being said. Learning to hear again is not a simple task. It is frustrating and overwhelming. It takes A LOT of patience. Patience that I am losing every time a situation is this difficult for me.

One of the most important things that Fraser has taught me is to speak up and be my own advocate about my hearing loss. However, sometimes I wish that I didn't have anything to speak up about. I wish I could have a normal life and be a normal employee. I hate, more than anything, that accommodations have to be made for me. Oh, everyone has to move so Alex can sit at the front of the room. People also have to communicate with me in different ways in order for me to hear.

As I left work, I felt so many negative emotions so decided to stop at the Mall on my way home. "Retail Therapy" is the cure to everything. I also knew I just needed to walk around and let go of the negative feelings that were surrounding me.

When I walked into the mall, my heart started to race because I was hearing SO many noises and all at once. 

• The sound of heels tapping across the floor
• The sound of people talking in the distance
• Music exploding from the ceiling
• Kids screaming as they sprinted past me to get to the play area

I honest to God felt like my head was going to explode. As I was walking, I kept cringing and looking over my shoulder to see what was going on around me. I felt a little paranoid. I do not think I passed more than 1 or 2 shops before I made a mad dash into Forever 21 to escape the madness. But this was much much worse! The music in this store was so loud and overbearing. The beat of the music soon matched the beat of my heart rapidly thudding underneath my shirt. As I got deeper and deeper into the store, my anxiety worsened. I couldn’t take it. I had to get the heck out of there. I honestly cannot remember what happened next but next thing I know I have my hands over my ears and I am running out of the store, out of the mall, into the garage, and into the safety of my car. Wow. That was the most overwhelming 7 minutes of my life. I think that this has to be some type of world record for the least amount of time spent in a mall.

While this week has been a bit discouraging for me in my ability to hear and understand people, as well as in my attempts to be “happily social”, I now understand why the Envoy Technician sets the devise at minimal gain for the first couple of months and only allows you to hear and get used a small range of sound. While my experience at the mall was overwhelming, it did give me more confidence in Envoy’s process. I feel like I have the strength to be patient and that everything will fall into place soon enough. If it doesn't then it is not the end. In very small increments, my life changes everyday and I have faith that things will get easier for me.

Helping my Marriage Blossom

Last week, Fraser and I decided that we wanted to start seeing a therapist to help give us the tools we need to overcome the many trials and tribulations that have presented themselves over the last couple of months. Some people think this is crazy since we have only been married for 6 months, but we have encountered more in the last couple of months than most people face in their first couple years of marriage. We love each other and want to be happy. We are not afraid to admit that we need a little extra push to help us get back on track. I am actually really proud that we have taken the step to do this because many couples wait until it is too late. Also, we now are gaining important skills and learning invaluable lessons that will help make our marriage work and last a lifetime.

While walking into our appointment, the sound of the cars flying by was piercing. I asked Fraser what he thought of this and this noise did not seem to bother him. However, this noise was so overwhelmingly loud for me that it overpowered Fraser's voice. I have also found that it is difficult for me to talk on the phone when I am near a busy street. I will have to tell the person on the phone to stop talking until all of the cars are out of site. I wonder if this will become more bearable with time. I wonder if this is something that I will need to learn how to "zone out".

Fraser and I could not be happier with our therapist. I have seen a couple of therapist in my lifetime and I have found that it is very difficult to find a therapist you can trust and connect with. It usually takes a couple of tries so we both feel so fortunate that we were able to find a good connection. 

Throughout the session, we both did A LOT of talking...Too much talking. She mentioned that we both have impeccable communication skills and that we have a gift that allows us to express what we are feeling. However, what we learned is that one of our biggest issues as a couple stem from our "listening skills" and "need to be heard".  While we are great communicators and able to express how WE feel, we are not listening to each other, and, because of this, we feel that we are not being heard by the other person. She gave us probably the most important pieces of advice we will ever learn about marriage and relationships. 


“Strive to listen before trying to being heard”  


"Where there is anger and hatred in a relationship, there exist fear, sadness, and loneliness"


We also were able to talk about some of the pent up resentment we have developed towards each other and I think it was just nice to finally digest all we have been through in the last couple of months. Overall, we are both very pleased with how everything went. While we still have many things to work out, we cannot believe how much we learned about our relationship in just one session. We are both so hopeful and cannot wait to live the happy lives we both want and deserve. One of the most wonderful things about marriage is that you have a partner for life. You never have to face anything alone because you always have that person by your side to get you through all of the tough times. However, one of the most difficult parts of marriage is learning to put the needs of your spouse before your own while also letting your emotions/needs be known. We have a long way to go in achieving a marriage like this, but we sure do feel confident in our ability to work through this!