Tag Archives: hearing loss

The end of my boy-band days

Since you are my friends, I will tell you a secret. After all, that is what friends do. I was in love. Yes, seventh grade and I knew I had found love. Every generation seems to have this love or at least the infatuation of the term: boy band. I don’t know much music history, but I am pretty sure this phenomena started before The Beetles.

My era was the Millennium. Yes, that was even the title of the best Backstreet Boys album. (Actually, the only one I ever listened to of their recordings.) Among the many during that time, I focused my obsession on the Christian pop boy band, Plus One. I saved up my allowance and bought their album The Promise on cassette tape. (Yes, cassette tape!!!) I memorized their songs, read the magazine articles, followed their Myspace, and daydreamed endless hours of meeting them in person. I never went to a concert.

Needless to say, by the time I reached high school, I had a little more self-control on my emotions. But I still listened their Christmas album for weeks after my surgery. Jason Perry could sing those high notes on “Oh Holy Night” so perfectly that I had no choice but to hit the back button and listen to it again.

Like all boy bands, there comes a day when they are no more. Your favorite decides to part their ways and seek other directions, much to the tears of the fans. I kept my copies of the cd’s but only listened to them here and there when cleaning my room or doing a workout. I never touched the cd’s in college. I hid my secret; only my RA and roommate knew as the song “Written on my Heart” came on over K-Love on our way to church. Now I am in the final stage: my cd’s are in the thrift store pile. I said goodbye to those cute little faces I had once been in love with–and that is that. (Ok, secret: I kept the cassette tape, only because it is a cassette tape. It is like an antique of my childhood days.)

– – –

I am not just saying goodbye to my boy band days. It has come to the point where listening to music is more frustrating (if I can even hear it) than it is enjoyable. But unlike the boy band tears, I am surprisingly unemotional about this predicament. Even more surprising that I found pure joy in deciding who would receive the last of my cd’s…to whom I bequeath the classics and oldies. (Secret: I kept one cd–Nancy Honeytree. She was the first of music I remember listening to as a child. I went to a concert and sang her songs in church. It is now added to my “Special Box” with the cassette tape.)

Sure, there are things about music that I miss being able to follow–like watching movies and hearing the soundtrack; jamming to the “oldies” in my car (but on long road trips, I substitute for a book in its place, read from the backseat and do just fine); or my favorite of falling asleep to the sounds of music. Honest thoughts here: this may all sound sad, terrible, or unfair–yes, it is all those things–but that is not what I feel. I am satisfied. I was brought to this point slowly. I think the change first started when I painted the simple bird for my dad’s birthday three years ago. Music is not out of my life entirely–I may not be able to physically hear it with my ears, but it is in me. It always has been. Always will be.

Music gives a soul to the universe, wings to the mind, flight to the imagination and life to everything.



Filed under Adjusting to NF2, Books and Movies, Family Times, Funny Stories

It’s like lab work…Part II

Yesterday morning, my mom, sister and I set out for Cincinnati. My first appointment at Children’s was at 10:30am, and although it turned out to be a very long appointment (which I am used to), it really helped in understanding more of the treatments and a few ” for future reference” ideas from my social worker in the case I start getting to a point where more help is needed in daily things.

Whereas last appointment I was emotionally calm, this time I seemed to be an emotional wreck. In discussing the chemo treatments and steroids with my doctor, I burst into tears as I tell him the thought of me not being able to be on steroids (which are moderately helping as much as they can with the pressure from the tumors) is just unthinkable for me. How will I function? Then I turn right around about an hour later and get upset when we start discussing the options for receiving help in the case I am no longer functional, such as areas like getting ready in the morning or in the event I need to stay home alone and need someone to be there just in case I need help. I blurted out defense, “I am fine on my own.” Yes, but for how long. I see now that these decisions also affect my family and although I rely on them and they will do anything to come to my aid…there may be a point in time when they just need to be family and I can get more professional assistance. And thinking that way bugs me. So I ignore that fact, when I may someday have to face it.

I felt yesterday was a more typical doctor appointment. It was like a teeter-totter. I had my concerns/fears on one end and I had my push to continue to try hard when things are slowing down on the other side. I don’t think there is a right and wrong to this equation…but I realized the continual need for keeping this in balance is important too and that balance comes best when I lay aside both my fears of the unknown and my defense wall and focus on what God sees. Some nights I get in bed and have relief when I say, “God is not finished yet…” and other nights I just get in bed and cry, telling him that I am not sure how this is going to work. I think I took both these emotions with me yesterday even though I am at a peace about starting the treatments. I think too that because my body has been changing, I have been fighting harder against it and putting a “state of emergency” on getting treatments started to see if they help. Again, I have no control of this, but getting that into my heart and mind is a difficult task. Something I am struggling with and have in the past.

In general, I can’t say that I can give you much details about the chemo, Sirolimus. To be honest, I think I found the statement, “Third time’s a charm,” to be false. This is the third time that I went over the chemo treatments and side effects with my doctor. It was a bit overwhelming. I understood everything but it is very detailed this time with specific instructions that I am nervous. My RN assured me in an email this morning that the process will make better sense once we get started. And it will not be like Avastin where I go and have one day treatments then recuperate for a few days, get back to normal living and then restart the process in two weeks. This chemo treatment will be taken at home (which I also learned that it is a solution, not a pill) and I will be taking it more frequent than once every two weeks (like Avastin).

As we discussed side effects again, my doctor made it very clear that very few have started the chemo while being on steroids treatment at the same time. However, because I don’t have an option to stop steroids at this point in time (I guess I do but highly unwise), the team of doctors are going to be monitoring my blood levels from labs and anything that I email of things noticed, because this chemo affects your immune system and they do not want me to get infections of any kind, especially in the lungs (could lead to pneumonia). Most of chemo will be regulated by labs and blood levels..it will be a slow process, but still the hopes I do well on it and possible halt of tumor growth.

A few of the other side effects I will be given more instructions on what to watch (such as sores in the mouth, fevers, headaches)…and I was given specific instructions that I was not allowed to drink grapefruit juice. Still not sure why, but it does not harm me any as I don’t like grapefruit. 🙂 The plan for now is to get labs done on Monday, and as long as everything with labs check for an ok to go/insurance for the medicine then I am set to start this Tuesday, July 2nd.

The second part of doctor appointments was getting my much-anticipated Phonak Cros! I was a little concerned about the (probable) loss of hearing that I don’t think I was as excited about it as I was a few weeks ago. I told my audiologist first thing about my hearing loss observation. We did a quick hearing test on the right side and it did show that I lost some frequency in the low tones. Surprising but then again not so much, because the tinnitus has changed from when I wrote about my mind feeling “unorchestrated” to now a lower consistent tone. I said, “It sounds like a man gargling.” Sometimes things are hard to explain, ;).

We adjusted my hearing aid on the right side to give me more volume. I decided to go ahead and give the Cros the full trial run (keeping it under warranty of 30 days). This means I have time to try it out in different settings and see if it helps. If I think it is not-or in the event I notice more hearing loss in the next few weeks-then I have the option to return it for full refund. I am really wanting this to work, but at the same time, the hearing loss is something I will never regain…so I feel I must be wise in the final decision and give this a good trial run.

It is a strange piece! It is very tiny and there is no ear mold…just this little 3-D triangle microphone that goes in the ear and this little plastic tube that is attached the actual body of the Cros that rests on my ear. I am so used to having ear molds that I panicked when Marcia asked how it was working. I was feeling inside my ear and since I felt no ear mold I thought I had lost it. It will take some getting used to–especially putting it in!!

I can’t honestly say that I think I notice it helping yet as it has only been one day. Last night I didn’t notice changes, but I do want to keep my thoughts open about it and not “assume” the worst that it won’t work. Tomorrow I have a lunch with a friend at Chic Fil A. No time like the present to test it.

And that is the current news…the end of my lab report. 🙂


Filed under Adjusting to NF2, Family Times, Hospital Trips

Little Joys!

Have you ever stopped for a moment to listen to the water as it drips out of the faucet? What about the sound your sheets make when you ruffle them as you make your bed in the morning? The sound your fork or spoon makes against the dish; the taps your fingers make on the keys when you type; the brushstrokes when you paint on a canvas; the click of your eye shadow case as you finish getting reading in the morning; or the sound of pages turning as you read a book? Little joys!

Yesterday I got my hearing aids fixed! 😀 Funny is perception. It has only been a mere three weeks since they went from usable to unusable overnight. It seems much longer than that! The hearing aids currently are back to where I had them set before–I have them turned up all the way though, as we did not adjust any of the settings due to my last hearing test being in February. At that point in time, my left ear had gunky-dark fluid behind the ear drum and I received some medicine to see if that would clear out. I had my ears checked once and it seemed to be helping slowly. It was not until after the spring break that the tinnitus (insane ringing in both ears) became increasingly loud. So there is much difference in my hearing since February.

Changing the levels now seemed in wrong timing, because I have my MRI/hearing test next Thursday the 23rd. My regular doctor appointments are the following Thursday the 30th. As far as my hearing test goes, I am thinking my left ear has not improved any even if the gunky fluid is out from behind the ear drum. Even with my hearing aid in, I am not hearing much (though I placed it in first this morning and then shut the lid to the case and heard it clear as day…guess that is a good thing!) I do know, however, that I depend on my right ear/hearing aid the most. It used to be the opposite, but I can tell already that my hearing aids are helping…maybe n0t improving my balance but I have not run into as many walls today as I round the corner–little joys! And, after going three weeks with no hearing, I think I did improve my lip-reading and we started incorporating more sign language at home.

My dad is sneaky. He found this website where you can look up words you need and they give you a video of the sign. Last weekend, we had company and at Sunday’s lunch we had the typical tuna sandwiches, chips and salsa, carrots and grapes and cookies for dessert. I see my dad pull out his phone as the others at the table are in conversation. Not thinking anything of it, I return my attention back to lip-reading but sort of just sit in a daze. (I get bad at that. I stare like I am lip-reading but I am not paying attention at all in my mind! I need to work on staying focused!) Anyway, dad never waved for my attention or anything, he just moved his hands. I knew it was a sign, but since he did not mouth the word, I had no idea what it was. Instead of guessing or pointing aimlessly at the table, I just said, “I don’t know what that sign is.” It was grapes!!!

I should have remembered. I learned it in ASL I. Although dad was trying to be sneaky and not ruin the conversation at hand (I think I did 🙂 ), our table then erupted in sign–from discussion of ASL vs. ESL or SEE to guessing the word being signed (as my dad passed on his phone to my sister who put the website and my memory to good use!) Sometimes these conversations are awkward for me as I feel I should be the one to know all the signs (I don’t), but because our guests both had reference and previous experience to sign language, we were able to work through and remember words with sign together.

During these past three weeks, I now have experienced both sides of the spectrum in terms of hearing and hearing loss. Just the other day I read this quote. I think it sums up my thoughts the best way possible: “Heard melodies are sweet, but those unheard, are sweeter.” ~J0hn Keats.

I am happy to hear, thankful to hear, liking to hear…and I think it is because I had none–that I appreciate it more! Little J0ys!!

PS. This s0ng came to mind this morning:

Carolyn Arends, “I Can Hear You”

Leaky faucet dripping in the kitchen
Rubber squealing — watch out in the alley
Mr. Marley’s probably late for work again.
Birdie singing — telling me to get up
Such a soothing sound floating on the wind
I just keep listening

Funny how You speak to me
In such mysterious ways

I can hear You
I can hear You
It’s so amazing how Your voice keeps breaking through
I can hear You

There’s a church bell ringing out the hour
Like an old friend calling through my window
With the laughter of the children playing down below
You’ve got a way of getting my attention
In the rhythm of life, everywhere I go
Somehow You let me know

If I’ll only stop to listen
You’re in everything

I can hear You
I can hear You
I can hear You
I can hear You

Music video: http://www.youtube.com/watch?v=GtsWtNS-3Og


Filed under Adjusting to NF2, Books and Movies, Family Times, Muffy, Paintings


[Adj: Not orchestrated; unarranged or off the cuff]

I would venture to say that if I wrote this blog a few weeks ago then it would have had an entirely different perspective. I would have quoted to you lines from the Grinch: “Oh the noise, noise, noise, noise, noise. There’s one thing I hate, all the noise, noise, noise, noise!” Or my favorite Finding Nemo: “Mine. Mine. Mine. Mine.” The seagulls only ever quote one word the entire movie; must not have been difficult to learn their lines. Nigel, the pelican, is about to gulp down his breakfast. Annoyed at the seagulls, he turns and states in blunt authority: “Would you just shut up?”

When my hearing first started the extra editions of obnoxious noises and rhythmic patterns in my head, I had to force myself to find humor to keep myself from tears in most conversations. These two quotes above are most often what I thought. It was and is probably not very obvious to anyone (except to my family) that I am struggling to hear, most often past the extra noise. I put my emotions in the incognito, like the Penguins of Madagascar’s secret tunnel digging at the zoo: and I feel I hide the emotions well, until I can no longer conceal it.


Communication. Hearing. Deafness. My thoughts seem to be consumed most often about these words, their meaning in my life and how to handle them. I first started hearing a high-pitched ring in my ears in the eighth grade. I grew to ignore it; it really did not distract me or play any significance to my communication even when wearing hearing aids. I don’t think I ever really thought much about the ringing, unless it was louder than usual–in event I had a headache or something. Fast forward ten years and things started to change soon after we returned from our spring break vacation. I noticed two different rings. They both had different pitches and instead of just a constant steady ring, they made patterns almost like a broken record. This is where my first annoyance started. And I thought of the Grinch. I thought of Nigel.

NF2 is a disease where you often feel complete isolation in dealing with the different side effects caused by the tumors; but what I should know or realize by now is that I am not alone. Maybe there are a few extremes, like my sweet-smelling aroma–which I still smell!!! But the ringing in the ears, also called tinnitus, is common among other people with NF2. However, before I knew this, I finally had the courage to ask my friend–who also has NF2–if she had ringing in her ears. In our discussion about the different noises we hear, we both described them in terms of musical instruments or notes–which I thought was fun. And then I realized it is yet another area in my journey with NF2 where suddenly I am no longer isolated…after all these years of thinking that I was the only one who heard excess noise in my head! Suddenly, my perspective started to diverge.

There is no “on” or “off” button; I will live with these noises my whole life. I walked in the kitchen last week and declared, “I am nearing Deafness; yet I will never sit in silence.” As many days as there are of complete frustration in trying to communicate, even just with my family, there are other days like today where I hear the noise but it is tolerable. Maybe it is because last night I sat out on the patio and waited for Muffy to finish his midnight snack. I thought to myself about all the noises and patterns in my head, simultaneously playing their rhythms. It sounds like a 5th grade band; it sounds unorchestrated.

Then I laughed at the thought: “I wonder if any of the famous composers ever felt this way?” Hearing all the noises of the orchestra in their heads while compiling their notes together to become one masterpiece. How did they do it? I thought of Beethoven. His deafness never stopped him from becoming a world-famous composer. I can’t destroy pianos like he did, but in waking up this morning, I realized that the piano is one sound and melody in my head that I hear. The tinnitus is changing; last week it was the sounds of trumpets, electric guitars, an accordion, and clarinets (which were most annoying–sounded like someone was just blowing air in the horn and wiggling their fingers back and forth between two notes.) This week, I still hear the clarinets (though not as loud) and the accordian…but today I hear a regular piano. It has been like listening to a “rest and relax” cd you find at stores even though it sounds more like a child just sitting down and playing random keys up and down the piano. But it is a piano. It is almost refreshing.

Who knows–maybe tomorrow it will not be so refreshing; maybe I will hear something new or maybe not. These past few weeks have taught me about embracing change once again. So today I concluded that even though this may not be the “music” I am accustomed to hearing, it is music and I can praise God for the noise–even the clarinets.

Praise Him with the blast of trumpets high into the heavens,
and praise Him with harps and lyres
and the rhythm of the tambourines skillfully played by those who love and fear the Eternal.
Praise Him with singing and dancing;
praise Him with flutes and strings of all kinds!

Praise Him with crashing cymbals,
loud clashing cymbals!
No one should be left out;
Let every man and every beast—
every creature that has the breath of the Lord—praise the Eternal!
Praise the Eternal!

Psalm 150:3-6 (The Voice Translation)


Dr. Suess. How the Grinch Stole Christmas. Random House, 1957.

Finding Nemo. Disney Pixar. 2003.

*Image taken from http://www.religiousforums.com/forum/attachments/religious-debates/981d1171060978-great-news-hope-our-future-just-20smile-20and-20wave-20boys.jpg.


Filed under Adjusting to NF2, Books and Movies, Family Times, Funny Stories, Muffy, Random, Uncategorized

Now what?

I have to be honest. I have been procrastinating writing this particular post since Friday. Oh, I tried. And it resulted in tears of frustration. Last week was rough. It was not a good week. I kept finding more things during the day that I could hardly do–the last being I could no longer clip my left fingernails. And I use huge clippers! By Friday night, I just broke down physically and emotionally. I looked in the mirror and could not see anything positive.

Since the decrease of my steroids and now back to them consistent, I have been doing stable. I have full energy back most of the time (at least I feel more energetic) and most of the weight I felt on my upper back is lifted. But I feel it affected my hands on a more permanent level: more weakness and numbness–especially in the right hand as my ring finger is now very heavy from the numbness. I also find I have more curl in the left ring finger… when carrying things I don’t even use that finger. I am having a harder time opening things (especially in the kitchen), putting on makeup, putting in my earrings, unbuttoning my pants in a hurry, putting on thick socks, and typing. In a word: slow. I am getting slow.

I am thankful though that my back is not as heavy as two weeks ago. I have only had a few times of the extreme neck pain. At Thursday’s appointments, I saw some doctors from the Pain Management team. They prescribed these special patches that you place on your area of pain and it helps decrease the pain by numbing it. I have not had to use them yet, but thankful for this because it gives me more freedom to still continue things I would have been doing otherwise. When I use the rice pack, I have to hold on to it or balance it and that gets difficult. They also recommended I get a Physical Therapy evaluation and start PT. It was actually one of my questions as I have been trying to work on my posture–which helps balance, strengthen the back muscles, stimulate bowel movement and just help me in the long-term.

Otherwise, my main doctor and I discussed the steroid pills in terms of steadily staying on them for the time being. I have decided against the other two chemo treatments at this time, but really glad that we discussed things…because it gives me a better understanding for if and when the time comes to reconsider the options. I got all my questions answered. 🙂

Right now I am frustrated and sad. I got my left hearing aid fixed and my ear cleaned yesterday and I still cannot hear; Which means I am going to get a hearing test very soon! (Monday to be exact). But it is hard. I now realize how much I depended on my left ear. I cried last night when my dad had to write down what he was saying so I could understand. I think it is time for me to take another lip-reading class and touch up on my sign language…although due to the hands, I focus more on lip-reading anyway.

Remember my very first post of the New Year? (You can read it here). I talked about seeing the birds in the winter…their safe haven being the butterfly bush outside my window. Here almost two months has gone into the year and how easily I have forgotten that God feeds these birds and knows their needs (Matthew 6:25-27). In my own life, I have felt like these birds–in the cold of winter, finding a safe haven among the little branches of the bush even though the wind and snow still are all around. Almost as if when I say, “Will winter never end?” But really mean it more towards all the current health problems…finding new daily obstacles is like waking up to realize you have to scrap off your icy windshield again.

Today my cat led my attention to a male cardinal outside on the branches of the bush. When Muffy’s ears perked up, I looked and there it was: brilliant red. 🙂 Of course all around outside was snow, but there it was…in the gusty, snowy wind minding its own business. As the wind started to blow, the cardinal’s actions resembled how I feel at the present moment: clinging for dear life. I watched for a while and asked myself, “And what am I clinging to?” The hopes that my body will go back to the way it was before? Quite possibly. Like I said…this weekend, I just dismissed everything. I did not really even talk to God, because I did not know what to say and I was trying not to be angry about all these new changes. I get tired of change.

I don’t want to be stuck in the ruts of winter months forever, so I do need a change. I need to change back to seeing hope in all circumstances. It has already started. I have been going around and making notes of things that are difficult and possible alternatives. My family has been there with suggestions and support. And I know that God does see my life living with potential. I just finally have to cling to that promise with my whole heart.

‘Let not your heart be troubled,’ His tender word I hear,
And resting on His goodness, I lose my doubts and fears;
Though by the path He leadeth, but one step I may see;
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me.

Song: “His Eye is on the Sparrow.” To read more about the story of this hymn, click here.


Filed under Adjusting to NF2, Hospital Trips, Muffy

Accommodations For Normal Living

I did something yesterday that I have not done in a while years! I ordered to go…DRIVE THRU!! A big deal considering every time I want to grab and go–I have to park, walk in, order, wait, then go. When I am with family, things are pretty normal (minus a missed ordered fries or no sauce); or if I am driving and my sister is in the passenger seat, she yells past me and then I just pay and pick up at the window. But me alone…ordering drive thru most often is like talking on the telephone (even with my internet captel)–lots of communication problems. I think most people would say ordering drive thru is hard for anyone, but it makes it even harder with profound hearing loss. Thankfully, most now have big screens so you can see your order.

The most common misconception I have about my hearing loss is that I cannot hear anything. True…when I have no hearing aids in. My new hearing aids give me a lot more power and range to pick up on sound, but even still I think my hearing is slightly decreasing. I have a hearing test next week with my MRI/doctor appointments to see how things are going.  People at work ask me if I hear voices. I do, but if I am not reading lips, then I have no idea what you are saying. SO, I have to give credit…it was like a “cheat sheet” drive thru. I got off work around noon, aka, lunch hour. I was exhausted but had a coupon for a free Chic-fil-A hand spun milkshake. They seemed to have a really busy noon hour and since I could not find a parking spot, I ventured in the drive-thru lane. They had long lines so they had set different workers at certain points to take your order and punch it in, so by the time you got to the window, you had already paid and just got your order. Brilliant! 🙂 But I still count it as official drive thru…because I never left my car!

Friday, I had an appointment to discuss different options for my phone upgrade. I am not interested in an iPhone or anything big with touch screens, because it is hard for me to hold and text. In discussing my needs, we are focusing on phones for seniors. Most common are flip phones with big T9 text keys. There are also ones that have ICE buttons on the top of the key pads, which for safety factor might not be a bad idea. We still have a bit of research to do with different things, but I think that type of phone is what I will possibly get. With my fingers getting so numb and loosing function…I am not looking for anything fancy but that covers my need. We also talked about getting a captel landline phone. That was a big factor for me in my apartment. My phone service was not always the best, and if I had an emergency, I just can’t call people. I have to turn on my computer, start my internet, load the address, log on, set my phone numbers, then hope the website runs smoothly and does not cut off my conversations (which seems to happen on my most important calls). It takes a lot of time. With the landline, I just have to pick up the phone and dial out. I think that might be an important investment–especially when I want to call grandparents. 🙂

We also discussed a lot of different options for helping me maintain my independence. It is my hopes to get into an apartment of my own again soon. It was a big shift going from living with roommates at all times to living on my own. I saw concerns that could have been problematic. Thankfully, my apartment accommodated for a lot of them, such as a strobe light on the fire alarm. But I think there are more concerns than just my hearing. I also fall a lot. I fell out of the shower a few times in college and in the apartments in Denver. Not that it will happen again, but I also think of when the blood clot hit. I was also in the shower. That event was actually very scary for me. It leaves me with doubts of being able to safely live on my own again. And that is why the appointment Friday was such a huge encouragement for me to understand that there are resources, accommodations and technologies that help make independent living (for as long as I am able) a safer experience. I am so thankful for that.

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Filed under Adjusting to NF2


If I had cable, I would only want it for two things: football and ABC’s The Middle. If you have not seen The Middle, I suggest you rent season 1 from Best Buy and start at the beginning. Season 1 is hilarious! The show is about an ordinary family in Indiana–hence “the middle of nowhere”. 😀 Mike and Frankie Heck have three kids: Axl, who would rather play sports than study; Sue, extremely optimistic and tries out for everything but never makes any teams due to some funny issue or lack of talent (until cross-country made the team a “no cut” team); and Brick, six-year-old bookworm with extreme knowledge who whispers to himself. Every episode presents the family in a real life situation…but ends as a family sticking together.

Some of the best quotes come from Sue. She is quite the character!

Sue sees a possibility in every situation. Most often–although her family tries to tell her simple truths she is missing–Sue’s naive and energetic personality does not get the message. For example: Leap Year. Sue’s birthday is on Leap Year and she is ABSOLUTELY CONVINCED that she is going to have a surprise birthday party, even though the family tells her that she is not. At one scene, Sue comes in the kitchen where Axl is eating a bowl of cereal. She starts asking Axl if he knows any details of the surprise party. Getting annoyed, Axl takes Sue by the arm and leads her to the basement, telling her to wait there and not to come out–Sue’s not understanding he is playing a big joke, thinks it is real. Axl leaves and there is no one in the house. All you see is an empty kitchen and then Sue says from the basement…”This is so exciting!!! 😀 HA! Best part–they DID forget her birthday and woke her up at 4am singing happy birthday. Thus, she was surprised and thought they were planning it that way the whole time. Her family let her assume so. 😀

I have a surprise for you..no joke! 😉 Tomorrow is a big day; a “THIS IS SO EXCITING!” sort of day!! 😀


The hearing aids I have now are 7 years and 3 months old and let me tell you–that is like dog years in comparison to human years…these things are OLD! Every new audiologist that I meet is shocked at the model of my hearing aids, let alone the fact that they work so well. My hearing aids have been maxed out (meaning the highest possible they can go) since spring of 2008 when my right ear collapsed at a chapel. Before that, we had discussed the possibility of getting new hearing aids, but we were not sure how long my hearing would remain after that incident. To be honest, I thought I would be completely Deaf by now. God had other plans as I still have a little hearing left.

Currently, my hearing loss in my left ear is considered severe to profound sensorineural hearing loss and my right ear is considered moderate to profound sensorineural hearing loss. American Speech-Language-Hearing Association defines sensorineural hearing loss:

Sensorineural hearing loss (SNHL) occurs when there is damage to the inner ear (cochlea), or to the nerve pathways from the inner ear to the brain. Most of the time, SNHL cannot be medically or surgically corrected. This is the most common type of permanent hearing loss.

(All Contents Copyright 1997-2011 American Speech-Language-Hearing Association (ASHA). All Rights Reserved. http://www.asha.org/public/hearing/sensorineural-hearing-loss/)

My hearing loss obviously comes from the tumors on the Auditory nerves. For the most part, the hearing loss has been gradual–except that spring of 2008. MRI results did not show any growth in the right tumor, so it was assumed that the tumor hardened on the inside. This is why doctor appointments can get frustrating, because I can have new physical symptoms but nothing shows on the scans. I have an MRI and hearing test every 3 months. I have been relatively stable since July 2010. A little prayer goes a long way. 🙂

The only time in these past ten years of NF2 that my hearing ever improved was when I was on the Tarceva chemotherapy pills. That was a happy hearing test!!! Ask my family, I am not a fan of hearing tests. I have to sit and punch the button when I hear the noise. I have such high pitch ringing in my ears that most often I just sit there knowing that I am supposed to be hearing things, but I have difficulty discerning the noises from the ever-present ringing. But most of all, I very much dislike the “word recognition” part of the test. I get asked often if I can hear. Yes, I can hear (with my hearing aids on); however, if I am not reading your lips then you sound Japanese. Words have no meaning if I cannot read your lips. Simple fact: I am fluent in English AND in lip-reading (also American Sign Language, but I lip read so well that I only use ASL and interpreters for church and doctor appointments..or if I chat with a Deaf individual that I meet at stores, etc.)

My current hearing aids have three different settings: Setting 1, I hear everything. Yes, everything. Maybe not quiet things, but there is a constant background murmur! I also hear everything in LOUD proportions. Setting 2 focuses on people who I am talking to and helps to minimize the background noise. Setting 3 is supposed to be for the phone, but when I do call people on http://www.sprintcaptel.com (like a free TTY service), I usually leave my right hearing aid on setting 2. I cannot hear well enough out of my left ear to carry a phone conversation.

If you are a hearing person, what things would you miss hearing the most if you had sudden hearing loss?? Just curious. I miss listening and following along with music; hearing frogs, crickets and birds–even Muffy’s meow!! There are other things: communication with little kids or just my family in general, especially in night car rides or star-gazing chats on the grass. Watching TV or movies with no captions; my grandparents calling me at 7am on Saturday mornings to chat about life and current events; listening to the radio (we grew up on Adventures in Odyssey!!) and hearing sirens, such as police cars, firefighters or smoke detectors. Thankfully, modern technology allows me to have an amazing alarm clock that uses a flashing light and vibrator to coordinate with fire alarms and door bells. I do not use the alarm sound anymore, but the vibrator and light work just fine for me! 😀 Here it is:

See the yellow button? There is a connection at the back for a lamp. So when you have the lamp plugged into the alarm, you turn the light on by pressing the yellow button. The volume and tune knobs are if you want the alarm sound adjusted. On the right side where there are words: the top is “outlets”, which allows you to choose your wake up preferences. I set the combo of vibrator and light. The bottom is for the vibrator. You can choose steady or pulse. My favorite is pulse, because otherwise it feels like a steady head massage. 😀

I will say one quick note on having hearing aides…whenever my ears get tired of hearing, I just take them out. Instant silence. I realize that I have come to a place in life where I actually enjoy a few hours of silence. In silence, I like observing; I like focusing without being distracted by other noises; I like singing songs in my head or have a conversation with God. Sometimes God seems silent. Like Elijah, I expect to see or hear God in big ways (Elijah looked for God in the wind, earthquake and fire); He came in “A still small voice” (I Kings 19:11-12.) God has done incredible things in my life right down to the little details. Even today, another specific prayer was answered. When I tune into God–not distracted by the noises of the world–even in my deafness, I can hear His still small voice–the voice of Truth–say, “This one’s mine.”



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Filed under Adjusting to NF2, Family Times, Funny Stories, Muffy