Category Archives: Adjusting to NF2

December 22, 2013 · 9:27 pm

Limitless

Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, to him be glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen.

Ephesians 3:20-21

Yesterday didn’t quite seem like the first day of Winter. Of course I was not going to complain…warmer temperatures, a little humidity and rain was a bit refreshing for me personally, as I could actually walk on my own in the outdoors. I probably am quite alone in this excitement, but I am also truthfully a little sad that for Christmas we may be seeing green grass instead of a blanket of white. Guess it just goes to show that, “The grass is always greener on the other side.” I find the weather pattern here to not follow a pattern, so you never know what we will expect this week for the holiday anyway.

Yesterday’s less-winter-like weather didn’t stop us from enjoying the Nutcracker ballet performance in Dayton. Even though I could not hear the music, I was surprised at how much of the music I remembered and also how good the timing of music in my head was to the dancers onstage! (Ok, just had to have the boasting moment. 🙂 ) It was a memorable performance.

It really didn’t start at the Nutcracker, but the past few days my balance has been the worst yet. I think a main reason for yesterday was due to only being able to get a few hours of sleep the night before, so my body was exhausted. I have also struggled again with my bowels, so that may also play a part…the tumor pressure in the lower spine…the increase numbness in my left foot, resulting in a pained ankle and swelling. There are many things. By the time I am getting ready for bed last night, I have already forgotten about the fun of the day–the time I got to spend with my family, the magical performance of dancers, the chance to be out enjoying life.

I used to be a morning person…before my body got old. Before my body slowed, making any hurried situation a nightmare. I despise being rushed or racing time. I never win. This morning getting ready for church was like this. I could have been on time…if getting down into the garage didn’t mean coming right back up to use the bathroom; if getting outside in the wind didn’t interfere with my balance and the fact that I couldn’t get the side door to lock; if putting my walker in my car didn’t mean causing my finger to bleed or using all my arm strength. I slammed the door as I finished putting the walker in the back seat, balanced myself in the wind and let the tears flow. Everything in me wanted to turn right back around and just stay home.

But I got in the driver’s seat. Something in my mind just told me to press on…and church was amazing. I returned home right after church ended and finished the coffee that was still warm in the coffeepot. With the family still at their church service, I got a chance to have some alone time reading and doing some thinking. I read a newsletter from my friend. Her Christmas thoughts are taken from the experiences in her Denver neighborhood. I know the neighborhood; I had grown to love the kids and families there as I volunteered weekly with my friend’s ministry the five years I lived in Lakewood. The kids still send me get well cards–I cherish them.

My friend’s letter focused on Hope. We miss so much in life, because we see limits-even putting limits on God in all that He is, all He provides, all He promises. But God has no limits. He is limitless. I sat and pondered this. Lately my prayers have been mere few words, my frustrations in body leaving me with doubts for my future and what I will become..how it will affect my family. I have tried to ignore it, but I can’t ignore it for much longer. I can’t plan my future, but I don’t want to be unwise about it either.

Why is it hard to fully trust in the Limitless nature of God? For me, it means letting go of all I imagine or want for myself. And I guess that scares me. But it shouldn’t. Why would a Limitless God desire me to give myself fully to him, if He didn’t have a greater picture in mind? And so I seek that faith…that trust…that Hope.

Michelle Tumes, “Dream.”

Chorus: There’s a dream in your heart and His heart is your prayer
You can move mountains with your life in His hands
He’ll tear down the walls and He’ll walk where you can’t
Have faith in the power to believe
He’s given you the dream

2nd verse: I pray your dream will leap beyond you expectations
You’ll see miracles He has no limitations
Listen to His voice a spark will ignite
Let Him be the strength to carry your life
He’ll raise your spirit high

Faith in the power to believe, He has given you a dream…

 

 

3 Comments

Filed under Adjusting to NF2, Family Times

Tagged as , , , , , , ,

December 16, 2013 · 11:23 pm

In all things…

This is what I wish my attitude resembled towards this year’s winter weather: “I like snow! It is pretty and this morning I woke up early to yet more fluttering flakes dropping from the sky. Snow makes the earth cheerful and bright. Almost makes me want to sing Irving Berlin’s song, ‘Snow’ as performed in the classic movie White Christmas.”

Sounds pretty enthusiastic, doesn’t it? Well, allow me to show you my honest feelings towards winter this year:

Grumpy Cat kulfoto.com

Yep. This is just about it.

I have been grumpy towards this winter. The weather makes me even more dependent: In reality, it is not all the weather–it’s me…my health. The weather doesn’t help it any and the conditions surrounding daily activities, but I need something to blame. So, I have chosen the weather.

I get stuck in my winter jacket and can’t get my seatbelt on because of that fact. I blurt out, “NOT A FAN!!” And feel more like a little kid because someone buckles it for me. Maybe that is why this winter is bugging me. The more my health declines, the more I physically feel old yet like a live like a child. I struggle putting on my socks and boots; I can’t zip my winter jacket; I was only able to get out on my own once last week for an errand to Wal Mart, because most of the snow and ice had melted from the parking lots. The next day, it snowed again. Basically, I can’t go outside on my own. I can, but even with my walker, it is just difficult. Not to mention, a little dangerous with the ice. I fear falling.

There it is: winter is like fear. I think it’s the darkness…which is why I like Christmas lights. Light penetrates the darkness. Light brings joy.

Yesterday at church, the message was from James 1:2-4:

Count it all joy, my brothers,  when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.

“Trials of various kinds”–I seem to be feeling the weight of these words this winter. And I have tried to remain in Joy. It’s hard. In those moments of trying to live on my own, I find that my own joy is not equivalent to God’s Joy. At Christmas, we celebrate and remember the joy of a Savior born. Jesus, his life and death and resurrection, conquered fear and death. If it is conquered, then why do I fear the road ahead? Uncertainty is darkness…but being certain of my future in God’s hands is light. And although it doesn’t make my current physical living conditions any easier, I can depend on God like a child. I am His child. And I can find Joy in all things…

May you be strengthened with all power, according to his glorious might, for all endurance and patience with joy, giving thanks to the Father, who has qualified you to share in the inheritance of the saints in light. He has delivered us from the domain of darkness and transferred us to the kingdom of his beloved Son, in whom we have redemption, the forgiveness of sins.

Colossians 1:11-14

5 Comments

Filed under Adjusting to NF2

Tagged as , , , , , , ,

December 8, 2013 · 6:13 pm

A Christmas without Disappointment

Needless to say, last night I was a bit disappointed. Although I was pretty excited to wear my new mustard yellow fuzzy-knitted winter hat! But I am not so certain it was worth the long haul of pushing my walker on slushed-iced sidewalks in 20 degree weather. I take that back…yes, it was worth it for the memory–Oh, the memory!! But since it was dark and slushy-ice, I could not go into town on my own. Let me just say one thing: I have the coolest parents!

I have been looking forward to this weekend for quite sometime. The first weekend of December and it has been filled with Christmas cheer. Friday night we attended a concert at the university. I planned my outfit of a fancy red shirt, my green polka dot sweater and fun red earrings that resemble gift bows. The concert? The one and only Denver and the Mile High Orchestra. They are just about the jazziest, craziest modern horn band that will make you laugh and worship all in one evening. Believe me, my polka dots fit right in with the college campus fun!

IMG_1070

IMG_1074

I first saw Denver and his band perform on my Make-a-Wish cruise my senior year of high school. The radio station, K-Love, was hosting the cruise that took place the first part of January 2005. It would sail from Las Angeles to Catalina Island, and to Ensenada, Mexico before returning to the states. K-Love had been a great source of music, encouragement and fun during my radiation days in Denver (the city.) Mom and I could laugh along with radio hosts–John and Sheri Rivers-during early, cold, rush-hour drives to the hospital; Mom could sing and stay awake on drives home while I slept; and once we attended a movie they were promoting for Third Day’s Come Together album. Jokingly, I put my name in the box for a chance to win concert tickets–guess whose name got drawn? 😉

When the conversation about my qualifying for a Wish first came about, it shouldn’t be a surprise then that I would choose the cruise: a week full of concerts by my favorite bands! I see now that it was God timed, because after my freshman year of college, my hearing started to decline. By junior year, I was using interpreters for chapels and classes. Although I could still hear music, I usually played it loud and started keeping to “oldies,” basically no more K-Love as they played songs that I didn’t know.

Like I’ve said, this year at Christmas is different without music. On Friday, it is not that I didn’t know the songs (minus one or two), it is that I didn’t hear them. Nothing. I knew this, and went anyway: the performance and atmosphere was the reason I went. From what I remember on the cruise to what I saw Friday night: the band hasn’t changed much. 🙂

So why the big disappointment last night? Maybe I was expecting too much considering the weather and cold. Or maybe it was remembering how fun last year’s Parade of Lights had been and I just assumed the same for this year (without taking my current physical state into any consideration.) The best part about the town’s Parade of Lights is that all the little shops are open; between Beans-n-Cream and Stoney Creek Roasters, you are bound to get in a free hot drink outside their doors; and just about all of town’s residents and college students flood the streets. It’s like a movie moment.

And there we all were–ready for the parade. You can always tell when a parade begins as you see police car lights flashing. Since we were standing on the “end” part of the parade route, I saw the flashing lights approach very slowly, but they finally came. The police car was suburban style and it was pulling a trailer on which Santa and Mrs. Clause were seated on a sleigh, pulled by two model reindeer. I waved as they passed and didn’t think much to the fact that they were followed by a regular police car, with flashing lights. I still am not registering the fact that after that police car there was a huge line of regular cars.

Mom looks at me, “That’s it.”

“THAT’S IT?”

Haha, yes. Disappointment.

The truth is, the Christmas season can be disappointing-could be the weather, not finding “the perfect gift” for your friend, or even something as silly as a one-float parade through a whole town of people. Santa may have been the beginning and end to our town’s parade, but Jesus is the beginning and end of everything. The same yesterday, today and forever (Hebrews 13:8)–in Him there is no disappointment.

I am the Alpha and the Omega, the first and the last, the beginning and the end.

Revelation 22:13

2 Comments

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

December 1, 2013 · 8:54 pm

It’s different this year…

I knew it would be, but I didn’t think it would be so hard. I think it started when thoughts became reality: this would be the first Christmas in which I would hear no music. Earlier this summer when I gave my cd’s away, the facts were there, but not the season. I am glad I gave when I did…but now it is starting to settle in–Christmas in Silence. Oh, believe me, I sing in my head like a 24 hour radio station, but it’s not quite the same.

There is still joy in the start of December. I am just navigating my way around some “lumps of coal:” some ‘differences’ between Christmas present and Christmas pasts.

Eleven years ago, my Christmas season was not so ordinary either. Between my diagnosis on November 18, 2002 to my first major surgery December 18, 2002–I had missed most of school but still completed my assignments, sat for hours in waiting rooms and bright-colored hospital rooms at Denver Children’s in which I met a whole team of doctors that talked to me about everything that I did not even grasp or understand and still tried to do fun seasonal traditions with my youth group and family.

Then I had my surgery. I think my biggest worry was thinking I would not make it home in time for Christmas. Like I said, I did not (at that point) fathom the seriousness of the surgery and its possible effects nor even living the rest of my life with this disease. I cried more about missing school than fearful emotions (nerd, I know.) The day of the surgery, my pastor and his wife joined my parents and myself in the waiting area. They had brought some gifts from their boys and the youth group. One was a stuffed chicken that played music and danced, “The Chicken Dance” song. For some strange reason this was huge for us back then.

At first, it was just us in the room. Then a couple and a with a small boy, maybe aged 4, joined us. Making casual conversation, they told us that the boy’s name was Gabriel. That is all I know, but I can still see his face when we showed him the dancing chicken. It was silent joy of the season. I saw him a few days later when my sister and I went downstairs to do the craft of the day. Gabriel’s dad was pulling him in a red wagon; my sister was pushing me in a wheelchair.

The craft was a folded photo book. They had loads of Christmas stickers and markers. I just used stickers. I still have the little booklet; It holds five of my favorite pictures from that hospital experience. And I was discharged on Christmas Eve.

scan0001 Note: the reindeer antler headband!

Present day–my handwriting is down to minimal use. My few Thanksgiving cards were simple (I liked it that way.) I knew my Christmas cards would have to be too. Wanting a different but fun greeting card to accompany my picture and “<3 Mel” signature, I decided on stickers. I got twelve cards done and noted how it was like a OT exercise to my fingers. I cried because on a card I messed up my signature and smiley face so bad I was going to throw it away. Mom and Dad said I should still send it. It is not about my signature, smiley face or stickers–it is about bringing joy to my family and friends this season. I need to focus my own joy on that aspect as I finish my cards this week.

It’s only December 1st. I don’t think gratitude should be limited to the month of November. I have much to be thankful for even in the different physical circumstances. Not all is different: Already this upcoming weekend, I have fun holiday events that I plan to attend with my family. Christmas movies have captions and I realized that I can still enjoy the Nutcracker ballet even if I don’t hear the music. Ballet is beautiful. Tis the season for a good cup of peppermint mocha, gingerbread cookies and peanut brittle; carolers, classic Christmas novels by the fireplace, and trees decorated with lights and special ornaments; snow, parties with friends or family, and the times of solitude.

It is the season of giving, the most wonderful time of the year, the joy that is ours in remembering the greatest gift of all:

For to us a child is born,
to us a son is given;
and the government shall be upon his shoulder,
and his name shall be called
Wonderful Counselor, Mighty God,
Everlasting Father, Prince of Peace.

Isaiah 9:6 ESV

6 Comments

Filed under Adjusting to NF2, Family Times, Hospital Trips

Tagged as , , , , , , , ,

November 14, 2013 · 8:10 pm

My Father’s House

Last night I was finger-poking a few emails at the kitchen table. Mom was gone and Dad had gone out back to his workshop. I was not surprised to hear his footsteps come in a while later, but was caught off guard by his excited bounding around the kitchen entry way and motioning me to follow him with a big smile on his face. Doing my best to make haste in following him towards the garage door without falling, I still am clueless as to what is going on or what I should be expecting to see.

Dad motions to go down the garage stairs and then does so himself. As he nears the bottom, I start to make my first step and grab the railings out of instinct. “OH WOW!!!”, I blurt out as I look at Dad who is all smiles at the bottom of the stairs. I look back at the new railings (attached to the old ones which are just huge wooden, flat beams). The new smaller, circular handle railings were perfect! Fixing the railings on these stairs has been on the top of my OT list, as for starters…I am serious I have “stairophobia”: my own terminology for, “Mel is afraid of falling down the stairs.” I even freak out on curbs. Going up is not a problem…just down. So the garage stairs ending in concrete…I just loathed.

Back in high school or college, if you asked me where I saw myself in five or ten years, you would never have heard an answer such as, “I can see myself  being a disabled and unemployed single adult living with my parents.” I also don’t think I would have ever mentioned living in the Midwest, painting or writing a blog either. Everything I said (because I know I did have the dreams like being married and having a high status corporate job) or would have said–would definitely been the extreme opposite of what I live today. I still have dreams and hopes for the future–they are now just different…and it has been a long road of acceptance to finally realize that home is where I need to be.

After my first DVT, I moved back in with my parents: and I was NOT co0l with the situation. I tried everything to help my helpless case but to no avail. After a few months, I decided that if this was going to be “home” until I bounced back on my feet, then I had t0 make my room as “my room.” We got my bed in and Mom helped me arrange so I had a bookshelf. It felt more cozy and life went on…about the time I have a few good possible apartments to tour, my second DVT hits. It all went down from there. It wasn’t until June of this year that I talked with my Dad: “I guess I should stop apartment hunting, huh?” One look from him confirmed my answer and somehow that is when full acceptance of “living at home” settled in…and I had a peace about the situation.

The typhoon that recently struck the Philippines, leaving horrific conditions and deaths, has been on my mind and in my prayers for those it has affected…for those who lost everything that was considered “home.” My heart goes out to them and it has caused me to see, yet again, the many blessings that flow into my life each day. I have never experienced a typhoon or hurricane, flood, fire, earthquake, robbery or forced to leave my home. The most I deal with is the privacy boundary line between my parents and myself–but to scale of the others, it seems so small.

As I made my decision about no more chemo and putting the AFO braces on hold, I mentioned to my Mom that I just wanted to live with no extraness until that was no longer possible (i.e. when I really can’t drive on my own, need OT help in getting a shower or having to use a wheelchair.) As I continued to talk, I got some tears, but was not sad. They were reaffirming tears: My physical body is temporary, just like this home in which I live…it will one day be made new. I have accepted that just as I accepted the fact I know live with my parents. The future is unstable–ask me where I see myself in five or ten years and I think you would just get a blank stare. I don’t know my future plans, but I know where I am headed–where my real home is…and that gives me hope. Yet another reason to have a heart filled with thankfulness.

Don’t get lost in despair; believe in God, and keep on believing in Me. My Father’s home is designed to accommodate all of you. If there were not room for everyone, I would have told you that. I am going to make arrangements for your arrival. I will be there to greet you personally and welcome you home, where we will be together. You know where I am going and how to get there.

John 14:1-4 (The Voice)

3 Comments

Filed under Adjusting to NF2, Family Times, Uncategorized

Tagged as , , , , , , ,

November 8, 2013 · 10:51 pm

Live for Today

This morning I got to sleep in without a guilty conscience. I still woke at 9am out of habit, but I just rolled over and went right back to sleep for another hour. I have had things on my list to get done but at the moment, I permitted myself the extra rest. I woke up the second time thinking it was a great morning, because it was.

See, I had no forced reason to get out of bed at 9am. I don’t have to watch the time or record my times in which I take chemo. No more labs, no more excess of orange juice in the refrigerator, no more syringes. In other words: I ended the Sirolimus chemotherapy. Yesterday. Finished–almost five months. Ecclesiastes 3:1 says, “For everything there is a season, and a time for every matter under heaven.” I started chemo in July in blind faith; I am ending it in the same.

This may not make sense to you; it may seem either that I have given up on treatments or that I am turning into a rebel. Neither is the case, but I have come to some decisions about my health, what I am currently doing as far as treatments and appointments and most important–what I want to be doing while I am still able to on my own.

My MRI results showed stable, or “no changes” that they can decipher. This is always a sigh of relief. However, this time it was a tad aggravating–if the results are stable then what on earth is going on that we cannot see? I suggested that they start putting some of the research funds/efforts towards a 3-D MRI machine. Maybe I am too much a Star Wars fan, but I think that would be awesome and more helpful in these situations as then we could see the tumors closer and at different angles.

So if my MRI was stable, then why did I end chemo? It is no surprise to my family (nor my doctor either.) I knew I would be ending chemo at the last appointment on October 22nd; the timing was not right for the discussion as well as I had decided to go the full two months again and wanted the MRI anyway, regardless of the results. I also see now the new lessons of faith that went hand in hand with the physical changes that have occurred since our trip to Wisconsin. These have shaped the path of where I stand now in my decisions and trust in God.

I ended chemo, because there comes a point in time where you ask, “Is this benefitting me?” I know you can’t ask this for all situations but I did in this case. The chemo may or may not have been keeping them tumors stable, but because the side effects in my body have increased at a fast rate, I don’t think tumor size is the issue…more what we cannot see, in which I did not see chemo helping. It actually was starting to frustrate me more than anything. I see this also with my AFO braces. I know–I just blogged my “I am a champion” post, but again, it was pre-Wisconsin days.

I know my body is fading; I have excepted that fact through much tears and a broken spirit. After Wisconsin, I just gave up on life. I saw no hope. As that week ended and I restarted my times of reading the Word, I kept returning to His burning question: “Do you trust me?” Trust. It is what I desire most from my doctors, family and myself that I know my body: I am the one living with the disease, experience the changes, and know when I need different. If I desire that in my own life, how much more God desires it from me: He created my body, died and rose again so my temporary pain would become eternal life, and meets my needs so that I can continue to live. And that is why I made some decisions: I am done dwelling on the past and trying to fix the future. I just want to live to the fullest in the present.

You make known to me the path of life; in your presence there is fullness of joy; at your right hand are pleasures forevermore. ~Psalm 16:11

10 Comments

Filed under Adjusting to NF2, Hospital Trips

November 4, 2013 · 10:06 pm

I used to be a Shopaholic

In college, my roommates and I went often to the movies. After seeing Confessions of a Shopaholic, I felt much like the main character, Rebecca Bloomwood. Not that I racked up almost $20 grand in debt, got a job that I knew nothing about, lied to a debt collector, or bought a green scarf for $120 on maxed out credit cards, but the movie made my conscience weary–because I did love to shop. And I was good at impulse buying.

I have always been one for fashion. It was why I wanted to be popular..they wore cool clothes. With my sister visiting this past week, we discussed the 90’s fashion and what we used to wear. Much laughter later, there is just no way it was fashionable, though at the time it seemed so. (I still dig 80’s fashion.) 🙂

Back to Denver days, or as I term–my “glory days”–I loved the city life! I lived with college roommates, had a great job (who doesn’t love Target attached to a mall?), lived in a great neighborhood–across the street from the public library and a park, and was only a few blocks from the best tea and coffee shops. I was in great shape, attended an awesome church and Bible study, volunteered with an after-school street church in downtown Denver, and was surrounded by friends. And I loved to shop.

It is hard not to when you are surrounded like this with so much. It was mostly clothes and, not to blame, but when you are a cashier seeing things fly past your nose all day..sometimes it gets to your brain. Brainwashed. It was better than magazines: I saw the newest products and prices, plus I had an employee discount. But not all shopping was for me. I like to give gifts; giving gifts brings me joy. Getting unexpected gifts gives me joy. To give you must also receive.

It wasn’t until we moved to Ohio that I got really serious about sorting my belongings. Growing up, we did have a thrift store run by our church and we gave our un-needed items to them for others to use. I am all for thrift stores…I shop at Goodwill, but I have always been one to want new in clothes. Fresh. I don’t think it is bad to shop that way, but I have to watch the impulse buys and motives when doing so.

I stopped shopping like Denver days when we moved out here. Yes, I still shop, just not as often. Before August, when my driving ordeal started and then draining health, I would run my errands after church. Coming in the house, I would try to hide a majority of my things in my disposable bags on my way past the kitchen, through the living room and to my bedroom. Parents always seemed to be in the kitchen; I don’t know…something like parents eyeing you makes you feel accountable for what you buy even though I don’t think they cared. Some Sundays it was just food anyway.

Times change. I still like fashion…I follow a few fashion blogs and still stand in front of my closet making “outfits” for different days or upcoming events. But shopping is now mainly for the needs. Most of it is now OT needs. I bought a set of plastic bowls, plates and cups the other day as it is something I need for the kitchen. They have better gripping edges; Me holding glass is getting dangerous. The OT list is for needs that will help me function and be safe, like a shower chair. And the walker I have is just genius!

Because I have been on steroids for almost a whole year, I have gained some weight. With my body the way it is, there are times when just getting ready in the morning or putting away my laundry feels like an exercise. Even today, putting on my socks, ankle braces and shoes took fifteen minutes; I hadn’t even done any PT yet but was breathing as if I did. My body is not its Denver “glory days,” and accepting that has been a long process of faith.

I did have some wardrobe needs now that winter is around the corner: pants and sweaters (among the top of the list.) I don’t think I have met anyone who is excited to go pant shopping. And in my case, I was looking for specifics. Mom recommended J.C. Penny as first stop. I had asked her to join me as I was uncertain of exactly what I was going for–basically, comfortable pants with no buttons. Slacks. I still have jeans and will wear them, but I needed something that was less harsh on the stomach.

We found what we were looking for in the petites section and I was pretty excited. There were some fun colored ones and a corduroy pair. Those didn’t work and fashion was thrown out the window. I try on the others and say, “I look like an old lady in these.” Then quickly blurt out loudly, “No offense if anyone heard that.” I just didn’t want to offend an elderly lady in the dressing room, happen that there would be one. It was exciting to get these pants but I have to admit, it was and is a bit embarrassing to wear them. Just not the fashion I am accustomed to, but they meet my need.

Sweater shopping was more normal–of course, Target just feels normal. 🙂 Marcia helped me find some sweaters. I am so glad she was there, because the last long sleeve shirt I try on, I get stuck. By this time, my arms are pudding and I had to ask for help to take it off. In other words, I may love fashion and shopping but it is now a very exhausting experience. Let alone when I get home I can’t carry my bags up the stairs anymore either.

I am still accepting the wholeness of these past few months–the changes in my body and image overall, but I feel I am reaching a point where I see significance in more important things other than fashion. You will still see me planning outfits or making a “new look” out of the clothes…just rearranging colors and patterns in ways I haven’t worn them before; I will still read the fashion blogs and comment on stranger’s cute shoes, but I am seeking to be content. Fashion is fleeting, but a thankful heart is what I desire most of all.

But godliness with contentment is great gain, for we brought nothing into the world, and we cannot take anything out of the world. But if we have food and clothing, with these we will be content.

I Timothy 6:6-8 ESV

2 Comments

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

Tagged as , , , , , ,

October 27, 2013 · 9:16 pm

Light

Today was refreshing. Encouraging. Restful. (I like naps!) A time of fellowship with a friend. And sunshine.

I am not implying that the sunshine alone turned my attitude in a 180 degree motion, but waking up to its light did lift the mood as I prepared my breakfast and sat down for coffee and morning readings. Last night, I ended the day pretty much in despair. I saw little hope. I felt sick in my stomach/intestines and getting ready for bed was in pain from the pressure in my neck.

Mornings are a better time of day for me; I am a morning person, though I can totally stay up late as well. But I feel energized in the morning and this morning was no different. I still woke to the same problems I fell asleep to last night, except the pain in the neck was gone and not as much pressure on the spine. My stomach issues are just something else anyway, but I did enjoy a light breakfast.

Finishing my coffee, I read the passage in Genesis where Jacob wrestles with God. I always find this passage interesting, because we see Jacob on his way to meet his brother Esau after fleeing from him years before because he stole Esau’s birthright and the blessing from their father Isaac. So now the night before they meet, Jacob is afraid. I read the Matthew Henry Commentary for this particular passage and it was discussing how Jacob stayed behind, alone, to pray…”wrestling” with the Lord.

And Jacob was left alone. And a man wrestled with him until the breaking of the day. When the man saw that he did not prevail against Jacob, he touched his hip socket, and Jacob’s hip was put out of joint as he wrestled with him. Then he said, “Let me go, for the day has broken.” But Jacob said, “I will not let you go unless you bless me.” And he said to him, “What is your name?” And he said, “Jacob.” Then he said, “Your name shall no longer be called Jacob, but Israel, for you have striven with God and with men, and have prevailed.” Genesis 32:24-28

I can’t say that I have ever prayed fervently a whole night about my fears…to be honest, this past week, I don’t even think my prayers got past the phrase, “I can’t do this…” Not even this morning’s prayers were very specific, but knowing that I can wrestle my inner thoughts, emotions and everything before God enables me to be vulnerable. I think of vulnerability like dependency = the sign of weakness. But it can be a source of strength–like my walker…it implies a tone of “handicap”, but it is a source of strength and stability when I walk. And today, I was able to get my walker to my car, in my car and drive to meet my friend for an afternoon coffee/chat. I don’t always need my walker or my cane as this morning, I was walking fine without them, but being independent, still needs dependent. I am finally accepting that my safety, when on my own, needs the stability.

Acceptance is rough. Although today, I found a ray of sunshine…of hope. I can live with these new changes, though I am still figuring out how, it is still difficult and I will still have melt-down days of despair, but today, light prevailed.

We ought to continue instant in prayer, always to pray and not to faint: frequency and importunity in prayer prepare us for mercy.

Wrestling believers may obtain glorious victories, and yet come off with broken bones; for when they are weak then are they strong, weak in themselves, but strong in Christ.

Matthew Henry Commentary. Biblegateway.com

4 Comments

Filed under Adjusting to NF2

Tagged as , , , , , ,

October 26, 2013 · 10:31 pm

When all the scenes flow together…

Today my parents and I went to the production of War Horse at the Schuster Performing Arts Center in Dayton. It was a phenomenal performance! Unlike most plays that pause in between different sections for changes in scenes or the props, everything today flowed in motion just like turning pages in a book. Speaking of the book, I have not read it (War Horse by Michael M0rpurgo)–nor have I seen the movie that DreamWorks produced in 2011; so I was a little confused in the second half but am very thankful for the change in seating arrangements they offered when we first arrived, so I could be close to the interpreters. It was a sad, but loving story (always best when based off true events). I can now put the book on my “to read” list, but seeing the play was amazing.

This week, all the “scenes” of the days seemed to flow together. Not a bad thing, just got a tiny overwhelming when you add the normal daily life events to tumbling health factors. The week started pretty typical: who doesn’t have insane schedules these days? I had a few important things this week: my driving test was the first. The PT gave me her clearance but wishes to see me again in six months. It was not until Thursday that I got clearance from my rehabilitation doctor at Children’s. I celebrated by going to Beans-n-Cream for a chai and some reading. I felt a bit social awkward, being out by myself for the first time and having to use my cane for balance, but I still enjoyed being out and back in my favorite coffee-house!

The most important thing was my doctor’s appointment on Tuesday. It was the end of month four of Sirolimus chemo treatments; the start of month five. Although there are no changes for right now as far as what I have been doing in treatments, I still discussed the physical changes that happened in my body over the WI weekend with my doctor.

On the way to WI, something in my body snapped and I got intense pressure (even more so) on my spine, which causes a list of new areas affected or the areas, such as my feet, to worsen. Simultaneously, I have had an increase of stiffness and numbness in my right arm. Over the weekend, I was hoping it was temporary…also because I was chilled all weekend, I thought maybe being back home in warmer air (which never happened, as this week our weather chilled to “winter weather”) and my own bed might release some of this new symptom. I am getting to a point where I need to stop going to bed hoping that tomorrow will bring a ray of release from it all, because it doesn’t happen that way (the way I want)–I only see it to be getting more unstable and on the downward slope.

I really was doing pretty well for the most part this week; I was not until Thursday evening that the pressure in my lower spine increased more…occasionally hitting the tailbone; Best way I can describe the feeling is like coming down on your tailbone while snowboarding. Yesterday was when it started to be obvious that it was affecting my balance more in the evening as I was taking smaller steps in precaution. I don’t want to fall. This morning, I just went ahead and used my cane; and now the walker.

To be honest, I didn’t write this post the past few days because I haven’t even had a chance to grasp it all; I can’t write on this blog (though I try my hardest) about all this in a way for you to understand. I don’t even understand, nor my parents or family that sees it direct and experiences the changes with me–just not physically. These past few days I really have just been a wreck–at least emotionally. And yet I don’t even know what emotions I am really having, because it resembles the production we saw today–all flowing together. And so right now, I am struggling. And that is about as honest as I can be…

8 Comments

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

Tagged as , , , , ,

October 21, 2013 · 11:03 pm

When waters still

I’m not a person who dreams of a vacation at the beach. I am not one you would find fishing while sitting in a boat, kayaking down a river or swimming in the ocean, signing up for snorkeling lessons, or being a lifeguard; I don’t even like swimming pools. Maybe because we didn’t grow up near beaches, but did fish/canoe in the mountain lakes and there was a nice hot springs about an hour from home that we sometimes went to in the evenings, big bodies of water are not something I enjoy. They scare me: the depth of the waters and what is unknown underneath is what it is. That and I can only backstroke.

This past weekend, we visited family in Wisconsin. My uncle is very passionate about sail boats and sailing, so it was no surprise that we discussed a sailing adventure, as it was going to be a full moon and the winds would not be as bad in the evening. I had to humble myself and remind my lack of enthusiasm (plus I was feeling extremely sick all weekend, but no excuse) that even though sailing was nothing I loved, it was something that my extended family did as a family activity and I should at least follow along and enjoy being with them rather than moping in negative thoughts.

We had to borrow their jackets, gloves and hats as we were not prepared for how cold it turned out to be, but once we layered up, we were on our way. Me, getting on the boat, would have been a Youtube video sensation. 🙂 Once I got on the boat, I sat and didn’t move until we made it back to the dock. I must admit, I had momentary jealous thoughts, because my cousins were balancing on the front of the boat just hanging on to the sail’s ropes. You would never catch me doing that sort of thing!

We get to the middle of the lake and it is a pretty view…darkness had settled in for the evening and all around the shores were lights shining. Then the wind stopped. Inner panic set in and the first thing I think of is C.S. Lewis’ Voyage of the Dawn Treader in the Chronicles of Narnia series where they experience a time of no winds. Of course we were not in a huge boat and have modern technology, so after trying to get a natural wind..we ended up having to use the motor to return.

I did find just sitting there–although thinking Narnia thoughts–relaxing, and when I stopped panicking, almost peaceful. Then I remembered how opposite the situation was for Jesus’s disciples:

And when he [Jesus] got into the boat, his disciples followed him. And behold, there arose a great storm on the sea, so that the boat was being swamped by the waves; but he was asleep.  And they went and woke him, saying, “Save us, Lord; we are perishing.” And he said to them, “Why are you afraid, O you of little faith?” Then he rose and rebuked the winds and the sea, and there was a great calm. And the men marveled, saying, “What sort of man is this, that even winds and sea obey him?” Matthew 8:23-27

If anything, my weekend was much like the seas in this passage–just personally in all the physical, mental and emotional. I am not sure why it all flooded in at the same time, but last night–once again crying myself to sleep–I told God that I didn’t know what to do about pretty much everything (mostly physical as that affects everything else.) I don’t even remember what my words were because I found myself in a deep, calm sleep. It was as if Jesus rebuked my waging body and instead told my being, “Peace. Be still.”

I still woke up feeling the same physically…but felt refreshed mentally and emotionally. There are going to be more storms in life…but I shouldn’t fear them: I am secure in The Lifeboat.

5 Comments

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

Tagged as , , , , , , , ,