Sharing what I’m about to is kind of like just ripping off a band-aid as fast as possible to get the pain over with. I’d rather just put it out there and not expend my energy trying to keep it a secret.

It’s been a long time coming. I’ve put it off for years. I’ve struggled with my hearing and pain in my ears for well over 10 years. For some reason, I just continually pushed it to the side. I’ve been pushing it to the side so long, that I can’t even pin point when it started. There were times that I was seeing my doctor for other reasons, and I mentioned the pain. They would take a look in my ears and comment on the scar tissue and that I didn’t have an ear infection. I got one or two referrals through the years to see an ENT. I made an appointment a couple of times. I would end up canceling due to one of my kids being sick or concerns about money and just figuring I had already put it off and I could just put it off a little longer.

So, what finally got me through that door? Without going into the whole story, basically a flare up of my Sjogren’s Syndrome manifesting as extreme pain in some of my muscles pushed me to the edge of being tired of being in pain, and every other issue I had been dealing with in my body for so long. I made an appointment to see my internist. That morning before the appointment I made a list of every symptom or concern I had been dealing with in the past year or longer, if it was something that hadn’t already been rectified. The hearing loss and pain were on the list. While at that appointment my doctor did a basic hearing test that I failed. That day, one of the referrals she gave me was to an ENT. I made a promise to myself that I would follow up on every referral she had given me that day to take care of every issue regarding my health. The next day I made the call and made an appointment for the next week with the ENT.

The issues I had been dealing with in regards to my ears were difficulty hearing, pain, ringing, and a new clicking noise that had started within the last few months. Every night when I go to bed my ears hurt. The left worse than the right. Whichever ear is facing up has to be covered with a blanket to help give me relief. If it’s left to the open air it would hurt worse. I don’t know why.

My difficulty with hearing has required me to adapt and become hyper focused in social situations to be able to decipher what is being said. Most of the time, I have to pay attention to the few words that I can pick out clearly and deduce from there what is being said. A one on one conversation is much easier to navigate and be able to hear when I’m face to face with the person. A group setting is difficult. There’s a lot being said that I’m completely unaware of. The hearing loss has been going on for so long that I’ve just accepted the fact that I’m not going to hear everything and that there may be moments that people don’t even realize I don’t hear them. I used to worry a lot more about what people would think. I’ve become more comfortable with asking people to repeat things, but sometimes even when they repeat it for me several times I still can’t hear what they are saying. That can feel embarrassing. There are times when I eventually just nod my head and let it go. I’ve worried at times that people might think I’m ignoring them, but at this point I hope that at least the people closest to me know I wouldn’t intentionally do that and most know I have trouble hearing. I’ve become pretty good at guessing at what a conversation is about just based on a couple of words that I can make out… but sometimes I’m completely wrong.

How has it affected me at home with my husband and boys? It’s frustrating for all of us. I get tired of having to repeatedly tell them that they have to speak up if they want me to hear them. They get frustrated that I don’t hear them the first time and they have to continually repeat things. In those moments where a serious conversation is going on, it is especially frustrating that I have to ask them to repeat or speak louder. I feel like I’m ruining the seriousness and focus of whatever is being discussed.

The hearing loss has affected me much more than the ear pain. To say that the hearing loss has an impact on me at least ten times a day in conversation would be putting it mildly. To say the hearing loss has some type of effect on my kids and husband at least once a day in conversation with me would also be putting it mildly. The pain I feel everyday that’s worse at night… I’ve just adapted and dealt with it. Most days I ignore it. The hearing loss won’t be ignored.

I had such a mix of feelings as I drove to my appointment to meet with the ENT. I had actually waited over ten years for this appointment. Ten years. I was excited and apprehensive at the same time. There were a lot of unanswered questions. I didn’t know what this appointment would entail. I didn’t know if it would mostly be talking and the doctor examining my ears or if I would have a hearing test or some type of imaging of my ears done to look inside. What kind of answers would I have after this appointment? Would I finally know what my level of hearing loss was? Would there be a way to fix it? Would I need hearing aids? What about the pain? Would the doctor be able to do something about the pain that I had been sleeping with for over ten years?

The first thing they had me do was to meet with the audiologist. I felt excitement knowing I would finally know the details of my hearing.

The pressure in each of my ears was checked. Then I was led to a small soundproof enclosed room with a widow that connected to a similar room on the other side. The light was dim and there was a chair along with different types of headphone type equipment with wires that would be used in testing my hearing. The audiologist placed the appropriate equipment in my ears, on my head, or in my hand. She sat in the other room where I could see her through the window.

The first thing she asked me to do was say words into a microphone that went to just one of my ears at a time and asked me to repeat a word when I heard one. After that I had to listen for tones in each ear and press a button on a handheld device every time I heard one. Lastly she had me repeat a list of words one at a time after she said them that were at a perfect level where I could hear them clearly. During these tests it was obvious to me that there were significant moments where I didn’t hear anything that I could respond to and I confirmed in my mind that there were some sounds I just couldn’t hear. Part of me felt flawed and part of me felt relieved that the testing had finally been done.

The doctor met with me back in the examination room. He asked a lot of questions and looked in my ears. One of the first things he told me was that my hearing loss and ear pain were not connected. They were completely separate issues.

First he talked about the hearing loss. He showed me my results on a chart and explained that when looking at a specific type of hearing loss the ears will be very similar. I could see that the pattern of tones that I heard followed the same pattern for both ears, one line was just a little higher on the chart than the other one. He then showed me the range on the chart that represented normal hearing. Before he even said it, I realized only one of the tones that I heard was within that range… and it was just barely within it. Everything else was below the line. Then he showed me that most people hear things clearly at about 40 decibels. I had passed the test 100% on repeating the words back during the test, but they had to be said at 70 decibels.

“You have mild to moderate hearing loss. There’s nothing that can be done to correct it. Your only option if you want to hear better is to wear some type of amplification device, a hearing aid.”

Then we discussed the ear pain. He stuck something in my ear and pressed on something inside it and asked me if it hurt. Yes, it hurt. He said he could tell it did just by the fact that I grimaced when he did it. Then he showed me a picture of the inside of the ear and the jaw joint he had pressed on. The pain had nothing to do with my ears, it was jaw joint pain. Temporomandibular Joint Dysfunction, better known as TMJ. He said this is something that’s treated by a dentist and he could refer me to a specialist. He told me to take some ibuprofen and eat soft foods for a week and see how I felt. I told him I was already taking anti-inflammatories for my flare of Sjogren’s and a prescription pain medication. After talking some more, he deduced that it was probably likely connected to my Sjogren’s and a manifestation of arthritis causing the TMJ. He asked if I had a rheumatologist who specializes in certain autoimmune diseases like Sjogren’s. I told him I had finally made an appointment with one and the soonest they could get me in was December 31st. Now I will have to wait and see what the rheumatologist has to say about it. I almost feel bad for the guy with the laundry list I’ll be bringing to that appointment.

Lastly, the doctor went back to the hearing loss and told me I could meet with their audiologist right then if I was considering the possibility of getting a hearing aid and that they would be able to discuss all the options and answer my questions. I said yes.

My experience with the audiologist was something I will forever be grateful for. She was perfection in a situation that was uncomfortable for me. There was something about her that was comforting and she was in tune with what support I needed from her both emotionally, mentally and in choosing a hearing aid. It went smoothly and the next thing I knew I was walking out of the doctor’s office with brand new loaner hearing aids in both of my ears.

It’s been about 24 hours since I started wearing hearing aids. You know that song from Aladdin… A Whole New World? Yeah. That.

There’s an endless amount of thoughts and feelings swirling in my head and I will share more as time goes forward. The main thing I’m wondering right now is what perception people will have of me once they know I wear hearing aids. Will people treat me differently? I don’t know why I feel so much more apprehension about people knowing I have hearing loss than I do about them knowing I have type 1 diabetes or Sjogren’s. Maybe it’s because it involves one of the five senses? Our senses are significant and something that most everyone understands. It’s a flaw that’s easy to see and have judgement about or a pre-conceived idea. Maybe that’s it? I’m not sure yet.

I’ve asked myself many times why God continues to give me these kinds of challenges. All I can do is hold onto my faith that He knows me and has a purpose for my life. The purpose I have been able to find is that He needs me to be an example of resilience. He needs me to show that it doesn’t matter what happens to us, it is for our good and for our growth and He gives us the strength to carry on and keep getting back up every time we get knocked down. If I can get up, so can you. I know this isn’t the last hurdle… I’m only somewhere along the path and there’s much more to come. I will continue to rise for Him and for those who need my example of strength that comes from Him.

On a lighter note… I was standing in the kitchen last night making sandwiches while my husband was doing the dishes. I jumped out of my skin probably 20 times as plates, bowls, utensils, and glasses clanked against each other. Like I said…
A Whole New World.

What about you? What are you putting off or not taking care of within yourself? What is it that you perceive as a flaw? Is it time to finally pick up the phone and make that appointment? I think it is.