Category Archives: Adjusting to NF2

August 7, 2012 · 10:42 pm

You’re Invited!!

Wow. This Saturday couldn’t come any faster! And with a loaded week of doctor appointments, work, a football game 🙂 and the finishing touches of paints and details for the display of my booth…sleeping in my MRI today has never felt so good!!! Yep, these summer months just seemed to fly right on by!!! My last MRI was in April. Things were stable, so the decision was to go another three months with no treatments of any sort and let my leg continue to heal from the blood clot. I am doing well for the most part. Some days I feel the tightness and pressure from the tumors more than others, but God always gives the grace needed to continue on. I must admit that standing on my feet all day long while painting and drinking lots of caffeine is not very normal, so I will look forward to more normality next week.

There are a few things on my list that I need to discuss with doctors about on Thursday. My mom and I go down for a full day of appointments with different doctors. I also have a hearing test on Thursday morning.

Usually during a week like this–full of doctor appointments–I often get nervous. Since I don’t know the results of my MRI, my mind starts to wander…thinking of all the different things that could be showing on the scans. I get frustrated when I go to the appointments and hear that nothing has changed on the scans. Don’t get me wrong, that is great news! But when side affects continue to change–more weakness, more difficulties in hearing, more pain spasms, more achy nerves, more fatigue…if I go Thursday and hear “No change”–I might be upset. But see this is all nonsense to think this way. I have no idea of the scan results and no control over it, so why worry about it? Bad habit I suppose.

To ease my bad habit, I honestly have been too busy these past few weeks and especially this weekend to even think about my doctor appointments. I have too much on my “to do” list for Saturday. I am so thankful for my family helping me…not only with different suggestions for paintings, but also ideas for my display and logo, getting supplies, steering clear of my messes in the basement, encouraging me when I am burnt out, and for planning on being there to help all day during the festival! One thing that is for sure–if I ever do another event like this, I will (1) have all the supplies such as tables and a canopy, (2) have one experience under my belt for reference of things that went well and things that did not, and (3) I will remember the cause/effect of procrastination and not go in that direction! Overall, it has been a great learning experience! I even painted different styles and experimented with different themes, textures and colors. 🙂 Not to mention sizes! Some paintings are almost as big as me (and wider!)

Thus, I would like to formally invite you to this Saturday’s events!

What a great opportunity to represent my paintings, my passion and what God has done in my life! I am so excited!! Check back early next week for a few pictures of my favorite paintings and stories of Saturday’s event!

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August 3, 2012 · 12:01 am

Anne (spelled with an “e”).

As I finished my crunchy peanut butter and honey sandwich for lunch, I headed back in my room to finish a project. Today’s goal: my earrings. Picking out my earings in the morning (let alone putting them on) takes a while–due to all of the studs being crammed in the same small oval container, combined with the small backs which I usually drop. I decided if I organized my earrings, my early morning ready routine leaves me with a few more minutes to spare. I got a pack of cork tiles and a 5×7 frame, turned on part two of Anne of Green Gables and went to work.

Right about the time I start pushing in my pearl studs, the scene where Anne recites “The Highwayman” for the White Sands recital starts playing: Matthew Cuthbert buys Anne a pearl necklace; she recites; Gilbert gives Anne a standing ovation; and the scene ends with Diana and Anne walking by the lighthouse on the beach.

Now I can relate a bit more to Diana…wanting the latest fashion, the buzz, eyes the fashion of the ladies’ hair at the dances. But Anne sees past that. As they watch the sunset the conversation unfolds:

DIANA: Did you see all those diamonds? I wish I were rich and I could spend my whole summer at a hotel eating ice cream and chicken salad.

ANNE: You know something, Diana? We are rich. We have sixteen years to our credit, and we both have wonderful imaginations. We should be as happy as queens. Look at that! [Points to sunset.] You couldn’t enjoy its loveliness anymore if you had ropes of diamonds.

DIANA: I don’t know about that.

ANNE: I’m content with my string of pearls. Matthew gave them to me with as much love as ever went into any of those stuffy women’s jewels. I am happy Diana, and nothing is going to hold me back. (1)

I think Anne says it best. She is content. She is loved. She has a goal for her future. I think when I start to see life from Diana’s point of view, I get anxious…wanting more yet not realizing how much I have. Funny, Anne was a lot like Diana in the beginning of the movie–insecure yet prideful. She even wanted to be called Cordelia, always dreaming to be someone else. Her attitude changes over the course of events that unfold. And her attitude in this scene is spot on. Thinking each day from Anne’s point of view allows room for God’s point of view to rise above my own. Meaning, if I am content, happy, and realize that I am loved by the One who created me…even all my handicaps and pain and failures cannot hold me back from becoming who God created me to be. He says,

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call on me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart.”

Jeremiah 29:11-13.

Seems like the best way to start out each morning. And just like Miss Shirley told Anne, “Tomorrow is always fresh, with no mistakes in it,” (2) so too God’s compassion and mercy never ends. They are new every morning. Great is Thy faithfulness! [Lamentations 3:22-23].

References:

1. Sullivan, Kevin. 1985. Anne of Green Gables. Based on Lucy Maud Montgomery’s novels. Retrieved August 3, 2012. http://greengables-1.tripod.com/script/1part7.html#.

2. Sullivan, Kevin. 1985. Retrieved August 3, 2012. http://www.imdb.com/title/tt0088727/quotes.

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July 31, 2012 · 11:03 pm

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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June 22, 2012 · 11:25 pm

What I learn in Cash Office

Cash office is my time to think. It is my time to “journal” in my mind. I think of random things, funny things, even songs or movies will come to mind. It is like my own talk show for two hours. Combine that with my ever-present cup of coffee, it looks like an idea situation. 🙂

Today, random thoughts started formulating in my mind. One thing led to another when all of a sudden my mind started simmering with thoughts of yesterday’s work experience, which had caused me to become angry. I realized that I was starting to let my mind boil with angry thoughts, when really all was said and done and was not that big of a deal. I caught myself and thought, “Why is it so hard to let go of things?”

I see this pattern in my life. If I get hurt (or wounded pride) by someone then I get defensive. It has caused some severe damage in relationships in the past. Things I regret saying, but I know that I am forgiven by those I hurt and God. So I must let it go. Once I realized that I was starting to steam today, God brought to mind of things I should be thinking about instead:

But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness,  gentleness, self-control; against such things there is no law. And those who belong to Christ Jesus have crucified the flesh with its passions and desires. If we live by the Spirit, let us also keep in step with the Spirit.

Galatians 5:22-25, ESV

Love

It is easy to say the word love. I say it about everything–“I love this” or “I love that”. But when it comes to relationships, to say “I love you” means that I need to love as God loves. God loves unconditional. Sure, it is easy to love your family. But what about the homeless, the forgotten, the ones in prison, drug addicts or your enemies? Romans 12:9-21 talks about love in action. “Love must be sincere…Be devoted to one another in love. Honor one another above yourselves” (verse 9a-10). If I choose who I love, then I am a hypocrite. I must also love God with my whole heart. “‘Love the Lord your God with all your heart and with all your soul and with all your strength and with all your mind’; and, ‘Love your neighbor as yourself'”. Luke 10:27. Pretty simple–Love God, love others, love myself (and in that order). 🙂

Joy

Psalm 30 is a song of joy. “Sing praises to the Lord, O you his saints, and give thanks to his holy name. For his anger is but for a moment, and his favor is for a lifetime.Weeping may tarry for the night, but joy comes with the morning.” (verse 4-5). Isaiah 55:12 also says, “You will go out in joy and be led forth in peace; the mountains and hills will burst into song before you, and all the trees of the field will clap their hands.” There are so many other verses or songs that came to mind. There are some days when I think, “What could I possibly be joyful about today?” I think that is just it…it is backwards! Hope is joy! Even in the darkest times, there is hope…and in that we can have joy! It is not easy though. Sorrows come, but they only last for a moment compared to the hope that we have in Jesus Christ. And that brings joy. 🙂

Peace

First thing I thought of was when Jesus calmed the storm. He had been sleeping in the boat and the disciples woke Him in fear of the storm. “And he awoke and rebuked the wind and said to the sea, “Peace! Be still!” And the wind ceased, and there was a great calm,” Mark 4:39. The peace that God gives is enough to calm any storm…even when nothing seems possible. The months following the blood clot–everything just seemed so restless and confusing. Then I asked God for peace. It came. It was still the hardest time of my life, but it came. It is in those moments that you understand that God is in control and you just have to trust Him. “Be still and know that I am God.” Psalm 46:10a.

Patience

If you have ever seen Lord of the Rings, you will note that Smeagol and Gollum are the same character but two different personalities. Smeagol is the good and Gollum is the bad. In the Return of the King, Smeagol and Gollum are talking while Frodo and Sam are sleeping. They (Smeagol and Gollum) want the Precious (the Ring). Smeagol does not want to hurt Frodo, but Gollum keeps convincing him that they cannot have the Precious without it. Gollum keeps telling Smeagol to have patience.

Life always seems in a hurry: Always on the go, never wanting to wait, must have now style. Patience can mean waiting five minutes in the line at the grocery store or waiting a few months for a friend who is planning on visiting. I think patience is also where we get anticipation. While we wait, we get anticipation. When we hurry while waiting, we get antsy. For me, this is my worst problem! I am not very patient when it comes to time. I don’t like racing against time. I don’t like being late. I am not a very nice person if we are in a hurry and going to be late. It is where my OCD shines bright. I set my alarm and check it a few more times even though I know it is set.

Many things in life can test my patience, such as waiting for a representative on the phone but instead being on hold for forever. But being patient has great rewards. Imagine if a pregnant lady was not patient during her 9 months of the child in the womb! When the baby does come, there is much joy! Right now, I am learning to have patience and pray about a few needs in my life. And I know God has in mind exactly the answer, but I have to wait until His perfect timing reveals them.

Kindness

There is an old Steve Green song that sings,

Be kind to one another, and build each other up.

Build each other up. Build each other up!

Be kind to one another, and build each other up.

Up, up, up, up, up, up, up!

I think giving sincere compliments to one another is a way to build each other up. Gossip is a way to tear each other down. It always happens to me: I start talking about someone and they come walking behind me. Not a very fun experience. Best way is, “If you can’t say anything nice…don’t say it at all!” Or Ephesians 4:29 says, ” Let no corrupting talk come out of your mouths, but only such as is good for building up, as fits the occasion, that it may give grace to those who hear.”

To me, kindness goes along with Goodness. You can be kind in words or deeds. Likewise with goodness. “You are the light of the world. A town built on a hill cannot be hidden. Neither do people light a lamp and put it under a bowl. Instead they put it on its stand, and it gives light to everyone in the house. In the same way, let your light shine before others, that they may see your good deeds and glorify your Father in heaven,” Matthew 5:14-16.

Faithfulness

I think the best way to say this is–God is faithful! I have seen it time and time again in my life from small details to big events. Most importantly though…I want to be faithful to God, because He is so faithful to me. One of my favorite hymns is “Great is Thy Faithfulness.”

“Great is Thy faithfulness”, O God my Father. There is no shadow of turning with Thee; Thou changest not, Thy compassions, they fail not. As Thou hast been, Thou forever wilt be.

“Great is Thy faithfulness!” “Great is Thy  faithfulness!” Morning by morning new mercies I see; All I have needed Thy hand hath provided—”Great is Thy  faithfulness,” Lord, unto me!

Gentleness

We used to own rabbits. They were so soft and when you pet them, you did it gently as not to scare them. I often think of God’s gentleness in terms of His peace. Isaiah 66:13a says, “As a mother comforts her child, so will I comfort you.” Believe it or not, but my real full name means “Gentle.” Although sometimes I am far from that, I thought to myself how I could be more gentle (not just my name). I can be more patient, kind to others even when they are rude, less prideful, less selfish, more compassionate, more loving, more encouraging. It is amazing how something such as gentleness can appear so small, yet impact so big.

Self-control

This is another. It is like a bad habit. I think for any individual there are different areas that need to have more self-control. A few months ago, I deleted my Facebook. Why? That is everyone’s question. Mine too. But I know that for a few years since I started it, my self-control of time spent on FB has been in quite a battle. I tried a lot of things: staying off every other week, only getting on a few times a week, even just once a day. But I kept coming back to the same thing: FB was my obsession. One night as I logged off, I just knew it was time. Ignoring the thought, I went to the bathroom to brush my teeth. And then it came: You should delete your obsession.

Getting rid of an obsession is not always that easy–and believe me…it stinks! But for right now, while I learn more about self-control in the little things in life, that is what I need to be doing. All these Fruits of the Spirit are a never-ending cycle of lessons learned and to be learned. It is life, because we are Being.

Today in cash office–what could have been an anger session in my mind turned into a lesson. God showed me areas that I can improve on in life. Thanks for letting me share my thoughts with you all. More to come…

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May 18, 2012 · 10:07 pm

Running the Race.

Last week, I finished Kathy Van Riper’s autobiography called, A Race Worth Running. A friend had given me the book as a birthday present last year and I put off reading it for obviously a good year. I am not sure if that was God timing, but I think I got more out of it now–being a year later–as I have been through a bit more experiences in my physical body, such as the blood clot. I was so emotional reading the book that after I finished I was talking with my mom and just started crying (a variety of things), but I pointed to the book on the couch and said, “I don’t know why this book has made me so emotional.” Mom looked at me and said, “Probably because you can relate to what she went through.”

I thought about this. It is probably true. If you compared my life to Kathy’s life, there are some extreme differences: she was married, had two kids, battled an extreme case of breast cancer for ten years, and lived in CA her whole life–and yet we also had similarities: We both loved running (I can’t physically anymore, but love walking!); we both had treatments on the same chemo called Avastin (although she went through ten other different chemo treatments; I have only been through two.) We both had a blood clot with all the blood thinner shots and pills that follow; we both lost our hair; we both had radiation; we both were (and I still am) supported by an amazing circumference of family and friends who love endlessly and share support during the good and bad times; we both had to switch hospitals and doctors after years of care offered by another one; and we both have faith. Kathy’s faith is now complete. I am still on the journey.

Kathy’s “life verse” was Hebrews 12:1-2,

Therefore, since we are surrounded by so great a cloud of witnesses, let us also lay aside every weight, and sin which clings so closely, and let us run with endurance the race that is set before us, 2 looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God.

I put in bold the phrase that she quoted most often in her journal entries that were at the end of the book. Kathy was a runner. Unlike myself who ran cross-country in high school but hated the races, Kathy thrived in races–anything from 5k, 10k to marathons. Whether you run or not, running as if in a race is almost the strength and perseverance mind-set for life: “[Forgetting] what lies behind and straining forward to what lies ahead, I press on toward the goal for the prize of the upward call of God in Christ Jesus.” Philippians 3:13b-14.

When I ran cross-country in high school, training was what got me through the races. For training, we would run on a variety of things during the week: grass, sidewalks through town, and other times, run up the mountain. I remember this one place…not quite sure where exactly in the mountains…but all of a sudden after you “warmed up” running the road, it just turned into a straight shot up the mountain. Rocks everywhere, so steep. It was literally a “breath-taking” view! 🙂 Coach always encouraged us to never stop. Never. So even though I was bringing up the rear end of the team while running slower than most people’s walking speed, I never stopped. After you got over that huge steep hill, things leveled out. Sure, it was still a mountain, but it was more like the hiking paths and less gruesome. Even after all this training, sometimes during the races I would want to give up. But then I would remember and say to myself, “Pull yourself together. You trained harder than this.” And I would not stop. Mental determination. The finish line was my goal. And that was the best part, because as you near the end you start to hear the cheers from everyone at the finish line. You pick up the pace, knowing that the finish line was just ahead. You forgot about the rest of the race…how much pain or how many people passed you. You strived to the end with all strength left in you. The verse that was so special to Kathy fit her life–her personality, her faith, and her race against cancer. The common phrase for people who have died from cancer is, “They lost the fight.” Indeed, our lives are worth fighting for but after reading Kathy’s book…I would not say that she lost the fight. Rather, she finished her race.

“Pressing on towards the goal”–I have shared Kathy’s favorite verse. I would like to share with you now my favorite verse. It is from II Corinthians 12:9-10,

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.  For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.

I had started running in the 7th grade…slacked off here and there, and in college, I started going to the gym every night. Not much kept me from the gym each night in college. I think it was my own way of “pressing on” during those times. I loved it. Something happened after I graduated, I stopped exercising every night and lost a little determination for a bit. I lived close to some different parks in my neighborhood and started walking there. I loved seeing the season changes and talked to God while I walked a few miles. My old job was also connected to a mall which had an indoor mile lap and I would often walk during my lunch breaks. Please understand me when I say this…as this pertains to my life and mental determination: When I either give up exercising, or can’t exercise from health reasons, I see a change. Like my attitude changes about how I see things in life…big struggles seem even harder, and even little things seem so hard. I told my mom about Kathy’s life during our conversation that night I finished the book–how she would go on mile runs a few days after chemo treatments. I said, “I don’t think I could do that,” as if it made me feel guilty for not getting out for walks lately or getting a few other things done that were stacking up in my room (which it sort of did). Mom said I didn’t have to. We were all made different.

Then I thought back to times in Denver. I worked Thursday-Saturday eight hour shifts. The weeks of chemo I worked Thursday, chemo Friday and then back to work Saturday-Sunday. Regardless of how much I tried to talk to work about changing this schedule, it never did. For months this happened. I think that is where my favorite verses really set in…”When I am weak, then I am strong,” because it was almost my reminder of my semester in college when I was on chemo pills. I don’t know how I got out of bed then, or on the weekends of work after chemo. Definitely not on my own…but on God’s strength.

The thing is, most people look at me and say the exact thing of what I said about Kathy’s life, “I don’t think I could do that.” And I would tell you, “You don’t have to. We are all made different.” God gives me strength to endure, just like he gave his strength to Kathy. He gives it according to our need. I think that is what makes life so special. We all have our own race–our own life worth running…enduring through pain, encouraging others and in return receiving it, rejoicing with those who have crossed the finish line, and striving for what lies ahead.

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May 4, 2012 · 11:55 pm

“Sometimes the night was beautiful…”

What a week!! Quick recap of big events:

I bought myself my first pair of sunglasses!!! I think they are pretty cool. 8-D (Yes, they go over my glasses–but they work great!)

I finished a painting. I tried Snapple’s new tea: Bret’s Blend Tea–Trop A Rocka. It has mango, pear, peach and cinnamon flavoring. Delicious! I got to talk to some friends from CO. My little sister comes home from college tonight! 😀 So exciting!!! 😀 We got to see some family friends who are in town and had dinner with them. And the biggest event of the week: yesterday’s hospital trip.

I had my annual 3-month MRI and doctor visits. It was a LONG day! I checked into radiology at 6:30 a.m. for my MRI. I got out around 9:30. Got a nice bruise on my right arm from the IV they used for the contrast. Went up to my regular doctor visits that lasted until 12:45 pm. Ate my sandwich on the run to my 1pm appointment for an ultrasound on my left leg to see how the blood clot is doing. I got out of there at 2:30. Back up for one more appointment and finally got to leave the hospital around 4 pm something. I was so tired by that time that as soon as I got in the car, I fell asleep. Thanks to my dad and mom for being there, because while I was sleeping, they were stuck in rush hour.

The day, although long, went well. It is my own battles of striving to be independent that cause me to build a defense wall when I attend appointments, especially when they are Occupation Therapy concerned. I like to do it on my own, even though my body is changing. And for me, it is harder to except the fact that my body is changing and getting more slow, than it is for me to adapt to changes. For example, when doctors ask me if I have noticed any changes…I say the obvious ones that I might be concerned with or notice getting harder to do. Then they ask my parents and they say things that I really have not noticed, because most often either I am used to it by the appointment so I forget the changes or I just don’t take note…like I can’t see myself walk, so I don’t notice how my right leg and ankle are working or seeming different. I am not mad at my parents for speaking these things, but my first initial reaction is to clarify with justification and try to prove that I am doing just fine. It is a hard day to sit and discuss about all the big to tiny changes noticed. It is not that any big steps are taken towards these changes–it is just discussing them. I think what frustrates me most is having to talk about all the options out there–possibilities–for when the time comes that I do need more assistance in maintaining my independence.

Independence. The word in itself is what I fear most I think. The thought of losing my independence causes me to strive to work harder to maintain what I can do right now in life. Like driving. The weeks following my blood clot, I could not drive and I struggled! When I was ready, driving and taking management of my schedule helped me get back towards feeling independent, even though I had just let go of my apartment. God only knows the future. He knows when I will need help and has surrounded me with an amazing family who helps me in more ways than I probably recognize and a team of doctors who have resources to help me as well. I just hope when it comes to that time, that I will have let go of my pride and recognize that I will need help. And not all help is bad. Not all help classifies me as helpless. Not all help labels me as disabled. The assistance at that point in time will enable me to continue to live independent for as long as I can. I must learn to embrace help, not build a defense against it.

I have not received the results for my brain and neck scans yet, but scans of the spine were stable. And the left leg shows stable as well. This is a praise!!! 🙂 Thank you for your prayers!

Last night before I went to bed, I went out to feed Muffy. The moon was bright, stars were shining, and it was a lovely warm evening!!! I sat on the patio and started humming Rich Mullin’s, “Sometimes by Step”. Of all the day’s worth of emotion, chaos of schedule, and long discussion…it was so nice to sit in silence. Just for a few minutes. No thoughts of the day spent or thoughts of tomorrow. Just a deep breath of wonder realizing how tiny I am in the universe, yet God knows me by name. He loves me and takes care of me. I am so blessed.

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April 25, 2012 · 12:13 am

Unscripted.

Usually my blog posts have a theme. I think of different things and put them together in a blog, blending nicely into each other through transition verbs and sentence. In itself, that sort of represents my train of thought, which I have mentioned before, and how I go about being productive in a day. Today’s productivity was running errands after work and scheduling upcoming appointments. I go from schedule to schedule…everything in a timely manner and train of thought. Not tonight. I decided tonight I am not going to have any plans. No train of thoughts. No historical evidence or fun facts (well, I shall refrain). Just me. Unscripted.

The past few months, I have been struggling with finding my passion again. In Denver, I was so involved. I was dedicated to work and surrounded by college friends and roommates, volunteered every week to a street church downtown with kids–which was pretty much my joy of living life each week–and when I was in need of some adventure or time alone, I would go to the mountains just ten minutes down the road. You get to the top of the first hill and see out like a 360 view of the city. I spent a lot of time doing that, especially the last full summer I was there. In the moments of chaos during those months…just seeing the view from on top a mountain made me forget the valleys and shadows of life beneath. Not that here is not beautiful, but there are no mountain tops to see around. Maybe that is sort of significant to my passion. I left it on the mountain top as I started into the valleys. See my problem does not lie with the health related issues being the “valleys and shadows”. They are my mountain tops. How frustrating it is for me to know this! It is so backwards, but in the backwards of the thought…it makes sense. When I have health related things come up…the biggies like chemo, surgery or the blood clot…I have nothing to depend upon but God’s timing, provisions and strength. When I become stable, I find that my focus shifts…I find my own strength to depend on, “I can do it”, like proving I can on my own; getting back to work, I find my own provisions; and I take over my schedule of “things to get done”. It is a habit. It is a bad habit. Why should my life be at the mountain top only in my physical sufferings? Why can’t I remain at the mountain top…or at least the upward climb towards that place even on the normal days? I believe that is why God has convicted my heart to get more in the Word and prayer as of late, because I am entering my valleys again. I should be praising God even on my boring, normal days just like I do when I am in pain. Such different advice apart from the other endless bestsellers on these subjects saying it the other way around. But that is me. Unscripted.

Summit Venture

You know what was great about today though? Blue sky! It is most often a rare sight to see here. Blue skies, green grass. My favorite part is walking or driving through the “tunnels” of trees. They clump together and shade over so it feels like a green tunnel. I think it is so beautiful! Reminds me of a song by Rich Mullins called “The Color Green.” I just have to give you this link of his music video. I watch it when I feel like I am living in black and white. http://www.youtube.com/watch?v=88Lx1D0gbTo.

Color is: Laughter, being creative, reading in a coffee shop while slowly sipping my cup of tea or chatting with a friend, walking with my mom in the evenings, playing Quicksand with my older sister and brother-in-law or chess with my little sister. Family nights watching “Shaun the Sheep”. Blending paints on a white canvas and coming up with a masterpiece in the end. Petting Muffy when he sits in my lap, brushing my teeth, writing my grandparents, creating new outfits out of old ones, suprise dinners with Dad, looking at old pictures, or seeing new places. Better yet, finding old postcards of places we have been to over the years. 🙂 Today I smiled when I waved to an old man crossing the road, seeing a friend at work, watching the ladies in front of me at the line in Michael’s chat with each other, mailing letters, getting a text from my sister about Lord of the Rings and eating marshmallows for dessert. Today I found myself being thankful for butterfly wings. They are so pretty. I saw a bunch of butterflies yesterday when my mom, sister and I were at a conservatory for plants and butterflies, birds and a mouse. Yes, a cute little mouse. 🙂

And that is me at the moment. Unscripted–in the beauty of stillness, a blend of colorful thoughts, and surrounded with love. Like this new butterfly…ready to spread my wings and fly.

“Have you not known? Have you not heard? The Lord is  the everlasting God, the Creator of the ends of the earth. He does not faint or grow weary; his understanding is unsearchable. He gives power to the faint, and to him who has no might he increases strength. Even youths shall faint and be weary, and young men shall fall exhausted; but they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.” Isaiah 40:28-31

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April 5, 2012 · 11:22 pm

One step at a time.

Guess what happened at Physical Therapy today!?!?!?!

I WALKED IN A STRAIGHT LINE…ONE FOOT IN FRONT OF ANOTHER FOOT!!!!

Last time I have been able to do that was right after my surgery…freshman year of high school. Wow. 🙂 It was not fast and I was super wobbly, but I did it! All the practice of standing on one foot and other balance exercises have paid off. It must have looked something like a baby taking the first steps on their own. I was the only one in the room too! Usually the room is full of other patients. But no one saw it: only me, my PTA and God. 🙂

Habakkuk 3:19 says, “The Sovereign LORD is my strength! He makes me as surefooted as a deer, able to tread upon the heights.” My weak ankles reminds me of another girl with weak ankles: Much Afraid. Have you ever read Hannah Hurnard’s classic work, Hind’s Feet on High Places? Much Afraid is the main character. Although I have never read the original book, I grew up on the junior book aimed for children or teens. I remember her journey…from the Valley of Humiliation to the High Places. Her companions are “Sorrow” and “Suffering.” The journey is hard. But when she makes it to the High Places, the Shepherd is there. Such abounding joy follows. You can read the first chapter here: http://files.tyndale.com/thpdata/FirstChapters/978-0-8423-1394-0.pdf. If you enjoy that then I really recommend the book. I look forward to reading it soon myself!

I find that I can be like Much Afraid: timid, physically challenged (she has weak–and I believe crooked–ankles as well), set out on a hard journey and there are some days where the mind tells the body: “You will never make it.” I have been there. Life is hard. The joy of the celebration of Easter means that my companions do not have to be “Sorrow” and “Suffering”; although Jesus never said that I would NOT have them, but to have hope–because He is greater than these things. Jesus conquered death. I do not need to fear even in spite of them: “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” John 16:33 [Italics emphasized].

Much Afraid’s story reminds me of my favorite song. Ever. I know I have said that I have many favorite songs, but this–this is my life song (so to speak). When I was little, I wanted to learn how to play it on the piano and sing it in church. It is by Cindy Morgan called, “I Will Be Free.” Instead of my own explanation, I thought it would be better for you to just read the lyrics. I also found a great video of her playing live, so you can hear the song and read the words at the same time: http://www.youtube.com/watch?v=0ySp0gktlN4.

The mountains are steep and the valley’s low

And already I’m weary but I have so far to go

Oh, and sorrow holds my hand and suffering sings me songs

But when I close my eyes I know to whom I belong

And who makes me strong

I will be free, I will be free to run the mountains

I will be free, free to drink from the living fountain

Oh, I’ll never turn back ’cause he awaits for me

Oh, I will be free

A wise man, a rich man in pauper’s clothes

A shepherd to lead us through the land of woes

Though many battles I have lost, so many rivers yet to cross

But my eyes behold the Son who bore my loss and who paid the cost

I will be free, I will be free to run the mountains

I will be free, oh, free to drink from the living fountain

Oh, I’ll never turn back ’cause He awaits for me, oh

Oh, I will be free, oh

Oh and I’ll dance on silver moonlight and I’ll walk through velvet fields

Oh, and I’ll run into the arms, the arms that set me free

Oh, I will be free to run the mountains, I will be free

Free to drink from the living fountain

Oh, I’ll never turn back ’cause He awaits, oh I’ll never turn back

Don’t you ever turn back ‘Cause someday, someday we’re gonna see

That we will be free

[“I Will Be Free.” Cindy Morgan. A Reason to Live. Sony, 1993.]

Have a blessed Easter weekend. I will continue my thoughts on life next week…

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March 29, 2012 · 1:45 am

Mercy.

Yesterday was hard. Not physically hard, but emotional. I turned in the keys to my apartment. I loved that place. It was hard to let it go. It was the first time that I have ever had a place on my own. It was in a quiet neighborhood; my patio faced the pond, bonus that it was on the first floor so I did not have to worry about stairs. I even had a garage so I did not have to scrap my car in the mornings and it was only ten minutes from work. I moved in the second week of November 2011, but between chemo every other week plus a family reunion at Thanksgiving, Christmas season work bliss and my sister’s wedding the first weekend of January, I had just officially settled in a few short weeks before the blood clot hit. I spent one night there two weeks ago. That was my last.

The time spent in my apartment, although short, has fun memories. I had enjoyed decorating, especially my 2-foot tree at Christmas. I hung my paintings and had a Greece/Rome corner in my living room which held my books, papers and photos from college days of study and travel. I hosted my little sister and some of her college friends right before finals in December for an evening of Elf (the movie) and snacks. I even gave a speech. 😀 (from Fozziwhig’s Christmas party speech on Muppet’s Christmas Carol!)

Of course, there were other aspects that were not so fun such as killing spiders. One night, I was preparing for the next day. I think it was a chemo weekend, because I was headed over to my parents that night. Anyway, since I don’t own a dresser, I keep my “unspeakables” in a little basket near my shoes. I was just about to grab some socks and the biggest wolf spider crawled out, and fast! I screamed so loud and jumped back as far as I could. It moved and I screamed again. It crawled behind the main bedroom door, so it was either try to run past it and get out in the living room or close the door and be stuck in the same room. I did not want it to go under my bed and it was far too big to kill with my shoe. I knew my Swifter stick was in the hall closet, so I started to move towards the door. Normally I would not do this, but because Dad would not believe me of how big the spider actually was, I took a picture of it. Yes. And it was so disgusting.

After I took my far off picture of the spider behind my door, I think my moving caused it to go out in the hallway. I was shaking and grabbed my Swifter as fast as I could from the closet, because the spider was now in the bathroom. I started hitting the floor with my stick, but kept missing. I have a purple city bathroom theme, so my bathroom mat is a nice dark purple; I am missing the spider every time I hit the floor because I cannot see it. Finally, it crawled off the mat and I hit it. I think I killed it the first time, but just to be sure I hit it a few more times. I have some sort of arachnophobia or something, because I was shaking so bad. I even took a picture of the dead spider just to make myself feel better. Of course I deleted them after I showed my dad. 🙂 I did not want to pick it up with just a kleenex. I got a trash bag to cover my hand and then grabbed several napkins. I threw everything in the trash–spider, napkins and bag. Then washed my hands. 🙂 I tell you–I have a serious spider problem! I packed so fast after that and put all my “unspeakables” in the wash. Such a funny story now, but at the time… I was traumatized. Lesson learned: never keep anything but your shoes on the floor.

I am thankful for the time spent in my apartment. It is a place I know God provided and even if it was only for a short time, I still enjoyed every part of it. It still does not make moving easy. To be honest, I am so confused. In Denver, I seemed to have it all put together. Here it seems like my life is falling apart. I don’t blame God or even ask “Why?” I think God is bringing me to a place in my heart where I can’t control my physical outcomes anymore, so I just have to trust Him to know that His plan is best. Maybe I took too much control in Denver. Even here, I thought I was fine doing things on my own. I am independent, yet my body is slowly becoming dependent. It makes a hard struggle between mind and body.

Most of my struggle the night before was guilt. I have been shown extreme mercy from my apartment complex who said if I turned in my keys by March 31st, then that would be it. No extra fees, nothing. Only God can ordain a situation such as this. I also have merciful parents who let me move back in with them for the time being. The mercy given has made me feel like I need to pay penance or something–prove myself worthy. Dad told me that I put the guilt on myself, because that was not their intentions nor the apartments intentions. I think it is part of my troubled spirit finding peace in the situation. I was still struggling with guilt when I got out of bed in morning. While at work, the song “In Christ Alone” (Townsend and Getty, 2002.) came to mind, especially the last chorus:

No guilt of life, no fear in death–this is the power of Christ in me. From life’s first cry to final breath, Jesus commands my destiny. No power of hell, no scheme of man can ever pluck me from His hand. ‘Til He returns or calls me home, here in the power of Christ I’ll stand.

No guilt in life. God is still working with me in this area. I did not paint this out of guilt, but I did want to show the apartment how grateful I am for their mercy. I could not think of a title. I sat in the car before I went into the office and just stared at the painting. My mom finally suggested Matthew 5:7, “Blessed are the merciful, for they shall be shown mercy.” And that is what I put.

So where do I go from here? Not sure. Just praying for direction. My mom gave me these verses today: “Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge Him and He will make your paths straight.” ~Proverbs 3:5-6. Seems like the best way to restart the journey.

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March 25, 2012 · 10:14 pm

My new droids.

Howdy. If you are eagerly awaiting the news of my hearing aids–this post is for you! The past few days have been interesting. I am in the process of retraining my brain to hear noise. Cool. And yet sometimes my first reaction is, “This is annoying!” Noise, noise, noise. I feel like the Grinch who hears the noise of Christmas below down in Whoville. 😉 There are exciting noises: I can hear myself breathe. I sound like Darth Vader. 😎 I can hear Muffy meow, purr and chew his food…which I thought was a frog at first. I hear better on the phone, but will still use Sprintcaptel. I have been trying to listen outside for birds, but I have not heard any yet. Communication is better, but that is part of the hardest retraining of the brain. My parents voices sound the same. I can hear the car engine tick…sort of annoying. I can also hear when the refrigerator comes on. When I text or type, I can hear the keys being pushed. And church echoed this morning, so I actually had to turn my hearing aids down. These are just a few things I have noticed. I was told that it will take 3-6 weeks to get used to these new hearing aids, and that it is easier for someone to adjust to new hearing aids if they have never had them before rather than if they switch hearing aids–(which I agree completely, based off experience!)

On my new hearing aids, I have all these settings and options to learn and understand; right now I feel a bit overwhelmed! The strangest habit for me to get used to is the method of how I turn the hearing aids on and off. These are my OLD hearing aids:

The number “4’s” are the volume control. It was always on number four unless there was times where the background noises were excessive. Then I would turn it down. Also, the switch at the bottom is how I turned it on. Imagine a good seven years of turning the switch off and on…now I have to pop the battery in and out. Old habits are hard to break.

Here are my new hearing aids:

This is only the right hearing aid. Both are this new “chestnut-brown” color and the same size. See how the battery is popped out? That means it is off. It might take another seven years to get used to that method. 🙂 These are like R2-D2! These little “droids” make beeping noises when it changes to a different setting and a little song when it turns on. They are also set so that my functions change automatically. For example, when I put the phone up to my ear…it automatically changes my hearing aid into the new setting. I do have the option to have manual settings. The only one I think that I will probably set for manual is the setting which minimizes background noises. I have plenty of time before my follow-up appointment to think about all the settings and my preferences.

Going to sign off for the evening. This past weekend was a big turn of events in many ways, which leaves me right now very exhausted! This morning I thought of Matthew 11:28-29,

Then Jesus said, “Come to me, all of you who are weary and carry heavy burdens, and I will give you rest. Take my yoke upon you. Let me teach you, because I am humble and gentle at heart, and you will find rest for your souls.”

 Off to make tea, then enjoy some quiet moments reading before I fall asleep. More to come…

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