Category Archives: Books and Movies

When I Grow Up

Do you remember sitting in elementary school and being asked the question, “What do you want to be when you grow up?” Like an early career fair, sometimes you wrote a paragraph on the topic or discussed it in class when guest speakers came to relate their exciting tales of their specific job positions.

However, to be honest, I don’t ever remember someone specifically asking me this question (besides the classroom setting as a whole) or if I ever gave a specific answer. I have tried to think back to see if I can remember, but I think my career interests back then until the time I reached high school were merely daydreams. I do remember at a young age seeing an orchestra perform on television and that is when I decided I would someday learn to play the flute. When this turned into a reality, I then ventured to dream that I would play in an orchestra…maybe a famous soloist. Well, I did get my solo moments in concert band. We may not have been an orchestra, but I consider performing Georges Bizet’s songs from his opera Carmen a good try (plus it was my favorite solo moment.)

There were other daydreams. I had always wanted to be a singer in a band. I strummed my air guitar or keyboard as I jammed to the music. Being an over dramatic girl, I played the roles of Florence Nightingale or once pretended to be a doctor. I sat on the side of my bed, clip board in the left hand, and stared at my invisible patient. As I went on to explain how the eye is connected to the brain, my invisibility was intruded when my sister (unknown to me) walked in on my consultation. Yes, the eye is connected to the brain, and somehow that was the funniest scientific truth my sister had ever encountered.

It was not until high school that I started to take interest in careers that were more than daydreams. Once I discovered I had interest in the world of business, I filled my schedule with classes such as Accounting I and II, Marketing, computer courses (much has changed in technology since then!) and I jumped at the opportunity to be an editor of our school yearbook. After I graduated, my job at the local florist shop gave me experience in every area, with my favorite of handling the money transactions or office management, such as mail and filing. It came to no surprise then when I started college with an Accounting major in mind. After failing miserably on my mid-term in Accounting II, I realized that the subject was way over my head and focused my emphasis on Management instead.

The funny part about having a degree is that sometimes it pertains nothing to your current career. To make a living while finishing college, I worked as a cashier–even after graduating. I slowly gained responsibility and trained to be a cash officer, which ironically, resembles an accountant’s role minus taxes and payroll. I enjoyed this and for the first time felt I had “a career.”

I was crushed when I felt God calling me to end my career that I loved last October, but I see now that it was His timing as the winter brought all the health battles. By the time March rolled in, I was feeling myself again physically and was becoming bored. So I restarted job searching. I wrote once back in college, “Job hunting is like chasing a white rabbit in the snow.” My sister wrote me back and commented, “That’s a simile.” I don’t have any clever similes up my sleeve this time, but I will say that the search has been frustrating. Not because there are no jobs on the market, but because I am not physically what I was even two months ago and I guess I question what I can actually perform in the world of work.

I know work means many things–there is work where you get paid or you can volunteer your time and work to serve others, both being honorable positions as long as the motive in your heart is pure. Colossians 3:17 says, “And whatever you do, in word or deed, do everything in the name of the Lord Jesus, giving thanks to God the Father through him.” I enjoy the times of volunteering–even if it is just time spent with a friend on a lunch date. But I also have a desire to work and finally admitted I needed help in that process, so I contacted the Bureau of Vocational Rehabilitation. After being approved for their services, I had another meeting with them yesterday to continue the process.

I was still uneasy about the meeting, but over breakfast I did more brainstorming on different areas that I wanted to discuss with the counselor. As I finished my coffee, I set out to finish the last chapter in the devotional book I started about a month ago. God’s timing of words spoken to the heart never cease to amaze me. And so I read:

Out of all history, God chose this time for you to be on earth.

We may think back with regret on who we wish we’d been. We may look forward with fear about who we might (or might not) become. But the only place where we can offer ourselves, where God can use us, is the moment we’re in right now.

Gerth, Holley. You’re Already Amazing. Grand Rapids, MI: Revell, 2012. (180-181).

I may not kn0w my future career, or the timing of it how it will all come together, but I can rest assured…life is more than the aimless chasing of white rabbits in the snow.

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The Book: “NF2: Our Journeys”

Question: Where has this year gone? Here we are in July already! Stop and think for a moment on all that you have done in the past six months. If you are like me, you may be wondering how you are going to write your Christmas card this year; thankfully, we still have another six months to figure that out. 🙂

As I reflect, there is a list of major events on my calendar: blood clot, hospital trips, Physical therapy, paintings, a few visits to see grandparents, Spring Break vacation, books read, made new friends, turned another year older, overcoming new physical limitations, visited my sister a few times in Columbus and Megan visited from Colorado…and last but certainly not least: I wrote about my life (limit 1500 words) for this book NF2: Our Journeys.

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January 2, 2o13–a representative from The Children’s Tumor Foundation contacted me through my blog in response to a letter I had sent to the foundation at the end of the previous year. Three days later, she contacted me again. The Children’s Tumor Foundation works alongside a foundation in the UK called, Children With Tumors. There was an opportunity for those with NF2 to participate in this publication (sharing their story)–all started by Jessica Cook who also lives with NF2.

January 9, 2013: Unexpected blood clot.

January 10, 2013: In hospital and I get an email from Jess. This is where it began.

I can count on both hands how many people I have known/met personally that live with either NF1 or NF2. Yes…less than ten people. It was only when I started this blog that my social group of “meeting” people who live with NF2 expanded slightly. When Jess first emailed me, it was about the book. I had no idea over the next five months I would not only get to be part of this amazing opportunity to share my journey of living with NF2, but also make a new friend in the process.

January and February were crazy months of doctor appointments, physical therapy and painting. I had until the end of February to write my story. Not that I procrastinated, but a combination of all taking place those months and just a lack of not knowing what to say, I finally forced myself to sit down a few days before the due date and write. I submitted it the day the rough drafts were due. By this time, Jess and I had been emailing back and forth and she responded to my draft with praise saying that it was what she had expected. That put my nervousness at ease.

My story was edited (spelling, grammar, punctuation) by Jess and a few of her friends and then sent back to me to read and review. I asked my cousin, who is known for her exceptional editing skills, for help on a few sentences and wordings–then satisfied–I sent it back to Jess saying it was final on my end. I picked my “author name” for the introduction and submitted a picture. (Muffy is famous! 🙂 ) By this time, I now had told my family about Jess and the book; I had mentioned it to my doctors in Cincinnati and wrote about Jess to my grandparents. Just talking about it all was exciting!

Getting to know Jess over the past six months has been both encouraging and inspiring. We never started our emails from the past (full life story)…we started right where we were at the moment. Sure, past events have come up in our conversations, such as, physical changes we have endured, emotional battles we have overcome (such as isolation and self-image struggles) and how living with NF2 has broadened our life’s story in ways unimaginable.

Jess’ work in the UK through her social advocacy website and group–Can You Hear Us?–has inspired me to be connected. I have been reading other blogs from people living with NF2 and (though good intentions) need to make a better effort to seek out the Deaf community here. It has also helped me to seek out the possibilities when life hands you disabilities; I believe God placed this book opportunity in front of me for a reason–because these past six months, I have seen my body change and weaken faster than the other nine years of living with the disease combined.

I say it often, but it is the truth: It is only by God’s strength and mercy that I can still function what I am. And He has shown me in abundance the past few months that what I currently struggle with physically is not the end–there is still more to my story waiting to be told. There is always room for hope…

My story: I seems to be a re-occurring phrase over the past few weeks. A few days ago I thought of the hymn “Blessed Assurance.” I think Fanny Crosby wrote what I feel about my story best:

Perfect submission, all is at rest
I in my Savior am happy and blest,
Watching and waiting, looking above,
Filled with His goodness, lost in His love.

This is my story, this is my song,
Praising my Savior, all the day long;
This is my story, this is my song,
Praising my Savior, all the day long.

– – –

To buy a copy of the book:

http://canyouhearus.co.uk/nf2-book/shop/

(Shipping is included in the book price and PayPal converts the total for those ordering from the United States.)

For More Information:

Cook, Jessica (producer). NF2: Our Journeys: A collection of inspirational stories written by people with NF2. Lavenham Suffolk, UK: canyouhearus.co.uk, 2013.

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Filed under Adjusting to NF2, Books and Movies, Hospital Trips, Muffy, Paintings

A Fresh Look

I don’t know if this is something hairdressers learn in their training schools, but how they can take a woman who comes in the hair salon looking like she just got out of bed (which I practically did) and have her leave feeling completely fresh is beyond me. This was my morning.

I woke around 8am. To get my day started, I did my physical therapy exercises and then planned to read a little over breakfast. The latter never happened. Mom found me asleep on my exercise mat at 9:15am…late for my chemo dose, I scramble to the kitchen and take my medicines, cram in a bowl of cereal, fill my Tervis of coffee and then head out the door. I get in the car and state, “I think chemo is making me more tired.” I think it is true.

My body changing quickly over the past few weeks has set me in a place where I have been going through insecurities about my physical state, especially the beauty aspect of it. It is easy to hear, “You are beautiful!”, but look in the mirror and see the opposite. Lies also wear you down…they make you tired. I was at this point a few evenings ago. After dinner, I decided to devote my evening just to reading with a cup of peppermint tea to help my sickly-stomach feeling. A few chapters later in my book, I come across this verse:

For God did not give us a spirit of timidity, but a spirit of power, of love, of self-discipline. 2 Timothy 1:7

I went to my bathroom mirror and excitedly wrote the verse with a purple dry erase marker. The verse does not say, “You are beautiful!”, but I think it is implied. Choosing to believe it is now like a fresh look at the day…will I leave empty or satisfied?

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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.

~Plato

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The Next Chapter

Rainy days have strange effects on me. Some days it makes me groggy as I feel it in my body…especially my right hand. That was my yesterday. I even smashed my index finger that morning within the umbrella as I was closing it; I never felt a thing–just a small pinch but it was only when I looked down to see why the umbrella was not closing did I see my finger jammed.

Another rainy/cloudy day today, but completely opposite. Today was my motivation day. I went supply shopping: paints, paintbrushes, canvases and various add-ons for my upcoming paintings. Yellow Spring’s “Art on the Lawn” festival is only a month away. (More to come on that topic!)

Today I was focused on the broad spectrum of details and errands that needed to get done, even though my right hand seems a bit swollen and my arm is tense. Like an equation, I am not always that full of energy. Yesterday I just focused my attention on one thing at a time. My favorite being a book. I was achy with sick feelings in my intestines, so I made a cup of Chamomile tea and picked up where I left off in Through Gates of Splendor, by Elisabeth Elliot. I was determined to finish the last few chapters.

Growing up, we knew the story of these five missionaries. Nate Saint, Roger Youderian, Ed McCully, Pete Fleming, and Jim Elliot who all followed God’s calling to show and communicate the love of Christ to those tribes in Ecuador that otherwise had no contact with the outside world. These men were at the time, the same age range that I am right now. I sat thinking of this…how these men gave everything for the Gospel. They were taking part of God’s plan to reach the nations, ultimately never seeing the fruit of their labor this side of heaven.

A few months after the deaths of these men, their story was recorded. The first copy of Elisabeth’s book was published in 1956. The edition I pulled off my parent’s bookshelf was the 25th anniversary edition, 1981. As I read the Epilogue II, I came across this conversation that Elisabeth had with Corrie Ten B0om:

“Sometimes,” she told me, “I have said, ‘L0rd, I must have something fresh. I cannot go on telling the old story.’ But the Lord said to me, ‘This is the story I gave you. You tell that one.'” So Corrie encouraged me to go on telling mine. (pg. 266)

And this encouraged me. I set out to write blog entries and feel like I am sharing the same story–repetitious. I want something new. But this is my story. and God wants me to tell it. So a new chapter to my story happened this week:

Tuesday evening I started my first dose of the chemo treatment, Sirolimus.  I take it every 12 hours. I have to be consistent with the time, so I chose to take it around the same time I take my other medicines.  So far I have had no side effects.

The chemo itself is very different from the other chemo treatments I have taken in the past. It does not feel like a chemo. Of course this is the first time I have had to keep medicine in the refrigerator…that could be part of it. The recommendation for taking the solution is to put it in a small 2 oz or so of orange juice stirring it a lot, drinking it and then drinking water or something afterwards. If it tastes the way Marcia says it smells, then I am double blessed as I can’t smell it nor does it change taste of my orange juice. Tonight I thought I would try the other recommendation for taking the medicine: in chocolate syrup. It was disgusting. I think I will just plan on drinking lots of orange juice for a while.

However, this chemo can cause mouth sores and so I have been given mouth care instructions to help prevent or treat these sores. First, a reward: I get an excuse to eat pudding, ice cream, applesauce, yogurt, ice cubes or pop sickles before and/or after as the cold and smooth will help prevent mouth sores. I have always been one for flossing and brushing my teeth after meals so that has not been a problem. They did give me a “recipe” for making my own mouthwash as I am no longer allowed to use store-bought ones due to the alcohol content used…even if it says “Alcohol free,” I am not chancing it.

My diet is much the same as it was before, except now I am a bit more cautious on going and getting that white mocha, as I am to watch my sugar intake. God must still want me to learn self-control. There are a few others on the list that I need to watch–eating red meats (which I don’t do often anyway), watch the different fats in dairy products and limit egg yolks to 3 a week; egg whites are fine. They warn against eating spicy foods as they can cause sores. I need to drink lots of cold fluids, eat lots of fresh fruits and vegetables, and get enough fiber. Even if I wasn’t taking this chemo, it is good eating habits to follow.

I am thankful right now that my body has been tolerating the treatments and will just have to take it one day at a time. I will have labs done every week and my first clinic visit to Children’s is at the end of the month. Do I think chemo is working? I don’t even think I can honestly answer that. My body changes from day-to-day. I note more aches or strains, more numbness or bad balance. There are always things at the back of my mind or new physical challenges to overcome.

My story is not yet complete. I know this. Some chapters seem to fly and others seem to drag on endlessly. Some pages make me laugh, some leave me in suspense and others make me cry. Like reading any book, you have to turn the page at some point to continue reading. If I focus on only one page full of th0se physical sufferings, I will never get to the ending or get to share the new things learned with you. I might just find out that the best part is only a few pages over.

*Elliot, Elizabeth. Through Gates of Splendor. Wheaton, Illinois: Living Books (Tyndale House Publishers), 1981.

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Confidence

This morning was one of those mornings. Not that I got started off with the wrong foot, but definitely the wrong shoes! I should start paying closer attention to my gut feeling that says, “This is not going to work.” Now I like to be optimistic, but that little voice inside tried to warn me that the dress I was trying on in the Target fitting room was too small. “It’s so cute, I want to try it anyway.” I get stuck. Thankfully my Mom was shopping with me that day. Lesson learned (at least for shopping).

You would think from my Cinderella shoe experience that I would have learned to follow signs that it might not be a good day to wear certain shoes. Think again. The cause: they completed my Sunday morning outfit (even to the choice of earrings). The effect: I was tripping in them even before I left the house. “If I walk slow I will do fine.” Even slow was not working. I get to the church door and the man who greeted me acted calm but I wonder what he was actually thinking. I said, “Good morning!” Then tripped and said, “Stupid shoes.” I never fell, but on the way out of church I was having such a hard time, I just slipped off my shoes and went barefoot to the car. The shoes are now in the thrift store pile. As cute as they are, they just have to go.

This morning, the message was on Psalm 16; “A Psalm of Confidence.” On the drive home, I was thinking of how the message was exactly what I needed to hear in encouragement and truth that “Confidence in the Lord means that I trust Him regardless.” It was like preparation for the days to come.

As I am still thinking, before you know it, one of my favorite movies comes to mind: Rogers & Hammerstein’s The Sound of Music. It could have been my shoe experience or emphasis on the word, “confidence,” but I started to laugh as I could picture Maria (played by Julie Andrews) singing and doing her fancy feet work in the song, “I Have Confidence.”

http://www.rnh.com/videos.html?video=109&gallery=170&vpg=7

[Fancy feet – 2:30; my feet – 3:46] 🙂

I definitely don’t trust my feeble ankles or my shoes to preserve me when I walk, but I have confidence in the One who is able: “I have set the Lord always before me; because He is at my right hand, I shall not be shaken.” Psalm 16:8

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It’s like lab work…Part I

If you have ever had important medicines where labs are required before you can proceed with anything medical then this post would be like the lab work. Maybe I spent too many hours in doctor appointments yesterday or maybe it is because I have somewhat neglected to keep you all informed of current physical conditions, but to understand yesterday and the current future course of actions then you need to understand the lab work of what has brought me to this point.

So here it is: Part I

I wrote at the beginning of the month about my May MRI/hearing test results, a list of things physically changing in my body and the fact that I had an option for a chemo treatment. Over the course of the month, here is an inside scoop of a few important decisions and observations that lead up to yesterday’s appointments.

First, it was no easy decision about the chemo treatments. Yes, I had an absolute peace that doctor’s appointment, but when I returned home, I was forced to face reality and the fear of the reality that my body is indeed winding down faster than my hopes, I lost sight of the peace that God was in complete control. I felt like this heavy cloud was over me..like the fear that I would make a wrong decision. I was just confused even though I was seeking God with my whole heart.

Do what the Lord bids you, where he bids you, as he bids you, as long as he bids you, and do it at once. —C.H. Spurgeon

Between different songs coming to mind (Michael W. Smith’s “Someday” (Set the Children Free), passages of Scripture (Psalm 90, emphasis verse 12), talking with my parents and the C.H. Spurgeon’s quote, I came to the decision that I would start the chemo treatments. Not implying that God has given me this time to “be sick,” but that I have the time right now to try. I knew deep inside that if I got to the next MRI without at least trying, then I would hold guilt on myself (even though I shouldn’t). I also had to come to realize that this is still something that is purely trial run. The hope is that it stops tumor growth, but it could not work any at all too. Neither myself or my doctors have any control of that.

My decision made, I emailed my doctors and we started communicating about different things. I also told them that I would not want to start anything until after my parents returned from their trip to Colorado. That leads us to this week.

Like any other appointment, I have to evaluate myself and make a list of any new physical changes noticed or questions I may have. Even though I was just at Children’s three weeks ago, I had a list of new physical changes which is a bit saddening, because it means that the something is still going on inside my brain area. Because I won’t have an MRI for another 2 months, I can’t assume tumors are growing but they are obviously putting pressure or something as my body is showing change, especially on the right side.

Changes I have noticed have been complete numbness in my right hand and up my arm. (I will blog more on my right arm later). There has also been an increase of pressure in my neck, so I feel my posture has decreased again even with keeping up with my PT exercises. I also have had an increase of pressure in the lower spine. I can feel it as well as I notice it in the way that I stand and the added pressure on my intestines. My balance seems about the same in normal walking situations but may have a bit more troubles as the most frustrating recent change being losing hearing in my right ear. Usually a few small decibel is not that noticeable, but I just got my hearing aid adjusted two weeks ago and already noticed that I was having a hard time hearing. And even if I did not notice, others had because the first thing a few friends and my doctor pointed out was my voice being strained (I do this when I can’t “hear” myself speak.)

As all this came together, I took my list and my questions to my doctor appointment yesterday. My lab work on my behalf was complete, but I was in for more when I got there…

Continues in Part II.

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Thursday’s doctor visits.

And it happened. May is now officially over and June has just begun. Crazy to think!

So I thought I would just recap from where I left off…Wednesday evening:

I don’t know what kind of results tomorrow will show or what I will be doing in this next month or the rest of the year, but as I gather my list of inefficiencies, I remember that when I can’t…He can.

I wake Thursday morning around my typical time, 6:10 a.m. This typical morning time started about a month ago…steroids can cause change in sleeping patterns. Lucky me, I get morning shifts where I see the sun come up and drink fresh cups of coffee at breakfast.

Thursday was no exception except our coffee was on the go, because we had to get down to Cincinnati for my doctor appointments. The day turned out to be relatively fast appointments and we even made it home before 4:30 p.m. which is a record breaker!

I came prepared with my list of questions and observations of things over the past three months. The doctors said I am doing well for the condition that my body is living. And considering the results of my MRI, that prior sentence is an answer to many prayers daily on my behalf.

The MRI of the spine showed stable, which is not what I was expecting, because it usually has more liquid in the tumor at the base of the neck growing in the spine. I asked if there was more fluid in this tumor, but the measurements did not show so.

The MRI of the brain is what surprised me. It showed tumor growth in the meninges areas, including the 5th nerve, etc. I asked out of curiosity if my doctor had a count of how many tumors were growing. He did not know, but estimated about 80% of the tumors in this meninges area were growing; a few as much as 3-5mm and that is the most growth I have had yet. The tumor on the left acoustic nerve has also grown. When I mentioned that I had more ringing and my hearing test results from last week, it made more sense of why my hearing has decreased in that ear rapidly over the past two months.
Because I have had a lot of new side effects, I asked if the tumors from the brain are the ones effecting the rest of my body. It seemed strange to me that this could be probable. I guess I don’t know enough about the brain. Anyway, my doctor said that between the tumors in the brain, the one in my neck and all the ones in the spine down lower at the abdomen–it is extremely difficult to decipher which tumors are causing the problems.
My initial thought was that they would increase my steroids, but because I have been experiencing certain side effects, they are keeping me on the same dosage I had been taking already. The steroids are just to help keep the pressure from the tumors down, but don’t have any control on the tumors as I also have thought this whole time.
Right now, I do have a chemo treatment option. It is also the last option at the moment that I have as far as studied/approved treatments. It is an oral treatment, so I would take it by pill. We went over the possible side effects again. They seem tolerable if I would get any but most effects deal with the blood cell counts and high cholesterol. I could also get a rash, swelling in the face, sores in the mouth (things like this.)
Thursday morning, my reading in Oswald Chamber’s My Utmost for His Highest talked about complete trust in Jesus: “Jesus Christ demands that you risk everything you hold on to or believe through common sense, and leap by faith into what He says.” I didn’t make my decision on this chemo treatment on Thursday. In fact, I still have to pray more about it and make sure that this is what God wants me to do. But one thing is for certain–I feel God had prepared me for that day, the news, the treatment possibility. I had a peace that I normally don’t feel at doctor appointments.
I can’t say that over the weekend the peace remained as strong as what I felt on Thursday. There were times of doubt, fear of the unknown, hard questions to ask myself. But when the time comes for my decision, I want to know the fullness of His peace like I felt on Thursday. The peace that passes all understanding and say, “Whatever my lot, thou hast taught me to say, ‘It is well! It is well with my soul!'” (Horacio G. Spafford, It is Well with My Soul. 1873.)

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Filed under Adjusting to NF2, Books and Movies, Hospital Trips

List of my insufficiencies

Kermit. Miss Piggy. Animal. Rowlf the Dog. Beaker. Fozzy Bear. The Electric Mayhem.  Statler and Waldorf. Rizzo the Rat. The Swedish Chef. (Just to name a few.) If you have ever seen any of the Muppet movies or The Muppet Show episodes, I am sure you can envision the characters, the voices, the humor. And sometimes God uses the strangest Muppet analogies to give me humor in spite of my insufficiencies.

This past weekend, I started my notes of things that need to be discussed with the doctors tomorrow. I see a team of different specialists: my main doctor for the MRI results and treatment plan; a pain team management doctor for the tumors in my hands and the pain in my neck/upper back; a follow-up with my doctor for the blood clot and a few others. It is a long day–early to late in the afternoon with all the evaluations being meticulous, but repetitive. There are the talks of future possibilities, different treatment options available, different steps or things to watch. My brain about half through goes into standby. So I started bringing a list. I do better with lists. I am a note-taker person. It helps me focus and understand or stay awake. 🙂

So this list is all the changes that have occurred in my physical body since my February visit. After my scribbles of a list was finished, I put my pen down and cracked my knuckles. (I know you are not supposed to do this, but it feels good and I figure my fingers are already worse off anyway.) I look at my hands and start to laugh. Out of nowhere I remember my MRI experience from last Thursday. That day, I thought I would take a nap during the scan, but the technician asked if I wanted a movie. I looked at the list anyway and figured I would just watch something fun and that I have seen before so if I fell asleep then it was no big deal. I skim the options fast and choose what I see as “Muppets.” Now assuming this was The Muppet Movie, I get cozy with my arms strapped in and headgear set in place. The movie starts and this is no Muppet beginning…it is Muppets from Space and I think, “Oh boy. I haven’t seen this in forever!” The first fifteen or so minutes, I was breathing so hard through my nose, because it was the only way I could keep from laughing!

I did end up falling asleep during the movie, but I don’t think I would have ever thought of this on my own if I had not watched that particular movie, because unlike the other movies where Kermit and Miss Piggy are the lead characters, this time it was Gonzo and Rizzo the Rat. Gonzo. Classic character. Classic nose.

gonzo http://www.imdb.com/media/rm2902164736/tt0158811

See that nose? If you are wondering how my left ring finger now looks as it continues to curl in–think Gonzo’s nose. It matches. Find the humor in the analogy and laugh. It’s ok, because I already did.

In making my list for the doctors, I found the “head and shoulders, knees and toes” song was the best way to organize my list so I started with my hearing; then my neck and upper back–more pressure and getting hard again to stand up straight or hold up my chin; my arm and hands–besides the “Gonzo nose” finger, my left middle finger has significantly started to curl as well. Whereas my right hand just went completely numb to my elbow making things like holding pens, buttoning my pants, putting in bobby pins, holding cups or texting, holding my toothbrush, tying my shoes, pouring coffee from the pot and typing more of a daunting task than they should be. My bowels still deal with constipation; and my legs/feet are weak. I can hardly get up off the floor or when I bend over to pet Muffy, if I am not holding on to something then I easily loose my balance and occasionally just fall over. Strange though, I have not had any pain spasms–Charlie Horse cramps in the legs–but no pain spasms!

I usually look at my list and I see my life becoming less independent. And if there is one thing in life that would be the hardest to surrender, it is my independence. It was the reason last year that I struggled so hard with moving back home. But where I could only focus on the losing part, God had bigger plans and he has been helping me to see that I can still live fully on my own. I just have a few speed bumps that take a bit slower t0 get over. Yes, there are days when I am completely frustrated at my hands or cry and say, “A 25 year old should not have this problem!” (like not being able to button my pants.) But to see past my insufficiencies helps me to see how blessed I truly am, because I have resources available to help and when the resources can’t, my family can.

Over the past few months, things of this have been changing: I got my own plates, bowls and cups that I can hold better; I have my special silverware and we just ordered more because I constantly use my fork and spoon now as it is. (See utensils here.) We also just ordered a button hook so I can button my pants; coiler elastic shoelaces so I don’t have to worry about tying my shoes or bending over when they come untied; and I bought hairbands so I don’t always have to use bobby pins. If I go clothes shopping, I have to be able to put the outfit on myself or I don’t buy it; I went back to wearing dangling earrings, because most often they don’t need backs so I don’t have to worry about trying to hold the tiny piece of metal; I gave away all but a few cd’s as I came to a peace about losing my hearing; and have been getting really good at finger poking at the keyboard when my hands otherwise are too tired or cramped to type in a normal fashion.

I don’t know what kind of results tomorrow will show or what I will be doing in this next month or the rest 0f the year, but as I gather my list of insufficiencies, I remember that when I can’t…He can.

I think I can’t, I think I can’t
But I think You can, I think You can
I think I can’t, I think I can’t
But I think You can, I think You can
Gather my insufficiencies and
place them in Your hands, place them in Your hands, place them in Your hands

~Relient K, “For the Moments I Feel Faint”

Other resources:

http://www.arthritissupplies.com/good-grips-button-hook.html

http://www.arthritissupplies.com/coilers-elastic-shoelaces.html

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Filed under Adjusting to NF2, Books and Movies, 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

Chorus:
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

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