Category Archives: Adjusting to NF2

March 22, 2012 · 6:39 pm

“THIS IS SO EXCITING!”

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!! 😀

I AM GETTING NEW HEARING AIDS!!!!!!!!!!!! 😀

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.”

http://www.azlyrics.com/lyrics/castingcrowns/voiceoftruth.html 

http://www.azlyrics.com/lyrics/mercyme/spokenfor.html

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March 14, 2012 · 8:51 pm

2 Corinthians 5:7

On my birthday, my parents gave me Jeremy Camp’s book, I Still Believe: Discovering hope and healing in the midst of life’s deepest valleys. Now, I have to warn you that I might be all over the place with the post as so many thoughts are in my head right at the moment. Hang in there and I will try to make sense of all this in what I have to say.

I had already started a book called, The Lost Letters of Pergamum, which is extremely fascinating (more about that later I assure), and because I wanted to finish the book before I started any others, I just put the Jeremy Camp book under my Bible to save for later. A few days after when I got in bed, I just could not resist reading the first chapter…I can never read just one chapter if the book is compelling! A few chapters later, I found myself flooded over with memories from ten years ago.

In his book, Jeremy Camp tells his testimony and recaps the journey of his first wife’s battle with cancer in early 2000-2001 along with his healing process and how God led him on a journey to meet his wife now, Adie (former Benjamin Gate lead singer). Back up ten years when I first heard about Jeremy Camp, his first album, Stay, had just been released September 24, 2002.

If you read my “What is NF2 page” you will note that this is before November when I first discovered the NF2 disease. Well, back up a few months to end of August 2002, CCM (Contemporary Christian Music) magazine had a two-page story about Jeremy Camp and his late wife’s testimony. I was so absorbed in the story, by the end, I was in tears. I knew I wanted to get his cd and hear the songs that he had talked about in the article.

October 2002, I finally got my braces off and on the way home, my Mom and I stopped by the Family Christian Book Store in Colorado Springs to get a few new cd’s–Stay was obviously one of them. As we enjoyed a few hours of music on the way home, I noticed I was drawn to Jeremy Camp’s album. It is rock and I liked that, but most important, I was drawn to the lyrics of 2 songs in particular: “Walk by Faith” and “I Still Believe.” Over the next month, I quickly memorized the lyrics to all the songs on the album not realizing how much that his songs were going to help me in my darkest hour. Then November 18th came. That night after we called grandparents and a few of my closest friends, I sat down just overwhelmed with emotions and confusion. I put on Jeremy Camp’s cd and for the next few weeks after that, it never left my cd player.

In April 2003, my oldest sister’s college invited me to their campus as they were hosting Jeremy Camp for an evening of worship. My sister had shared my story with many of her friends and they knew how much Jeremy Camp’s music had impacted my walk with the Lord during the hard physical and emotional battles. Because I had just finished my six weeks of radiation and was catching up on my school work, I was not able to attend. I was so bummed. I cried!!

God provided another concert in Denver, May 2003 at the West Bowles Community Church. [Just a funny side note–I pronounce things wrong a lot but some of the funniest were when I did not have my hearing aids. For example…West Bowles (Bowles pronounced as in a bowl used for eating…)–I pronounced it as West BowELS. Oh the laughs from my family could not be contained on that one! 🙂 ) Anyway, we headed up to Denver to pick up my sister from the airport and went to the concert. By this time, Jeremy Camp had just asked Adie to marry him, and she was there that evening. Reading the book now, I see the journey of healing for him and hope that God gave him in his relationship with Adie. Truly an encouraging and inspiring story that I was not aware of at the time of the concert. The line to talk with Jeremy Camp in person was endless, but it was a time I will never forget. I was able to share with him about how God used his music to encourage me when I first discovered the news of NF2. My family and I got to pray with him which was really special. The next morning was a Sunday, so we went to the morning worship service where Jeremy led worship and told more of his testimony. It was an incredible time!

I want to refocus on present day. It has been quite a while since I have heard of anything going on in Jeremy Camp’s life. I had just learned that he had a book coming out a few weeks before my birthday, and surprise, it was my birthday present. The thing is, I know it is God timed. Think about it (or as Star Wars would say, “Search your feelings, you know this to be true.” 🙂 ). I KNOW it is God timed. God timed Jeremy’s first cd to release a few days short of 2 months before the MRI results–the impact of the songs speaking truth about our walk with God is something that helped bring peace when all this started. Now, ten years later, Jeremy’s book releases exactly one month AFTER my blood clot. It was actually the week of February 19-25th that I hit a wall-not just physically and emotionally–but spiritually. I was angry and could not see any hope. To be honest, I am still struggling. I don’t have it all together yet…but that is why I am relating to this book, because we don’t have to have it all together–we just have to walk by faith. I am still not sure why God had this blood clot happen right when I was settled and doing so well…but I will never know here on earth and that is what Jeremy Camp’s book has reminded me–“Now faith is the substance of things hoped for, the evidence of things not seen.” Hebrews 11:1.

This book has really encouraged me and, most importantly, reminded me that God is with me every step of the way. He knows my hurt, my frustrations and my sorrows. Jesus said, “These things I have spoken to you, that in Me you may have peace. In the world you will have tribulation; but be of good cheer, I have overcome the world,” (John 16:33). If you have anyone that you know–or maybe even yourself– that is in need of encouragement, I really recommend this book. My story is my own story of how God has used Jeremy Camp’s testimony to encourage me not once, but twice, in my life. Maybe God will use it to encourage and bring hope to others as well. 🙂  God does amazing work in our time of greatest need…sometimes all we need is a little reminder and a point back towards the right direction. I leave you with my favorite song, “Walk by Faith” by Jeremy Camp.

http://www.youtube.com/watch?v=S3rP_3xAKi8

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March 9, 2012 · 4:00 pm

Endurance

Today was my second session of Physical Therapy. I go six weeks, twice a week. The goal: to help bring function back to my left leg by strengthening the muscles that have weakened from the blood clot, and to help stabilize my balance as best possible. Overall, PT repeats, “To build your endurance.” Tuesday was my first session. The whole time was used to see my body condition in the physical sense–things I can do well and things that I need help with during the sessions. It was mostly stretching and holding the pose for thirty seconds sort of exercises, but by the end of my 45 minute session, I felt like I had just completed a marathon! I came home and slept for four hours!! Today’s session, we went into the actual stretching exercises that they want me to start at home. It was more physically challenging…required more endurance.

My PT set me up on a step machine (not sure of the actual name, sort of like a stationary bike in which you are “stepping” but sitting down). As I was finishing my six minutes on the machine, I noticed a poster on the wall over to my right. It read, “A walk of a thousand miles begins with a step.” I thought that was a great saying to put in a PT gym. Here people come to regain what they have lost…sometimes even just their first step. The greater picture is that enduring the hard work, results will follow–even if it seems miles away. I remember running cross-country in high school. I was not very fast–I do not have a long stride–but every training made me stronger, not just physical but the mental endurance. We would train a few days a week on different terrains: grass at the park, running the cement streets, and our not so favorite–hills and every so often, a mountain. Yes, you read that right–MOUNTAIN!!! Talk about endurance! I am not a competitive person, therefore, I did not like the races, but during the races is when I felt like my training and building up my endurance had paid off! I never stopped, even in pain, and whether or not I came in last–which most often I would–the most important thing above all else is that I finished and I did not give up! That is what I call endurance.

This summer is the Olympics in London!!! YAY!!!!! More to come regarding that but the whole aspect of training and endurance reminds me of when we saw THE Olympic Stadium in Athens, Greece. What a sight to see!

There it is! Where the Olympics first began, well actually the first were held in Olympia (hence the name). Very fascinating history about the origin: http://www.greecetravel.com/olympia/.  The point–they have been around for a LONG TIME! Imagine those first games! 😀 All the strength and endurance, for what? Honor and a sacred olive branch (or wreath).  Enduring for honor! I remember my professor telling us that if a contestant did not win the olive branch, they did not return home…the honor was lost. Can you imagine how intense that would be?

The time we spent at the Olympics arena in Athens. I was reminded of what Paul says in I Corinthians 9:24-27,

Do you not know that those who run in a race all run, but one receives the prize? Run in such a way that you may obtain it. And everyone who competes for the prize is temperate in all things. Now they do it to obtain a perishable crown, but we for an imperishable crown. Therefore I run thus: not with uncertainty. Thus I fight: not as one who beats the air. But I discipline my body and bring it into subjection, lest, when I have preached to others, I myself should become disqualified.

And again he writes,

Not that I have already attained, or am already perfected; but I press on, that I may lay hold of that for which Christ Jesus has also laid hold of me. Brethren, I do not count myself to have apprehended; but one thing I do, forgetting those things which are behind and reaching forward to those things which are ahead, I press toward the goal for the prize of the upward call of God in Christ Jesus. (Philippians 3:12-14).

There are times when running the race is hard!!! And unlike cross-country races, sometimes I give up because I cannot see past the wall in front of me. But in everything there is hope: Every step towards the next thousand miles, I can go with confidence because, “I can do all things through Christ who gives me strength.” Philippians 4:13.


Here are some other websites about the ancient Olympics:

http://www.olympic.org/ancient-olympic-games

http://en.wikipedia.org/wiki/Olive_wreath *I like the story in this one. 🙂

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