Category Archives: Adjusting to NF2

February 13, 2014 · 8:32 pm

Today’s expectations

I expected it to be an early morning: 5am, it was.
I expected the coffee machine at Children’s to boost my morning energy: the new machine was broken. 8am, no coffee.
I expected the appointments to discuss the main issues–balance, intestines and overall function–with a long list of things that can help for “future” changes: it did, but without the long list.
I expected my MRI results to come back reporting “stable” conditions, even though I have still experienced  some physical changes, like numbness in the right hand: it did and I am thankful for no tumor growth.
I expected my doctor to want an MRI in another 4 months: he didn’t and left the choice to me. Next MRI is planned for mid-August (6 whole months!) 🙂
I expected all my questions to be answered: they were, along with much great conversation.
I expected to leave by lunch: 12pm, we did.
– – –
Life is often lived in arrays of expectations. A day like today shines bright and hopeful; other days, the expectations fall into shadows of despair. And what of the expectations I hold for myself? I often feel the “need to perform” or “prove” to doctors that I am still doing my best possible. And though I did not struggle much with that today, there were still moments. And what of the Great Physician? Why do I feel the need to prove myself to God physically? He knows my body is broken. And he heals: maybe not in the ways I expect, but always in hope.

The hope of the righteous brings joy, but the expectation of the wicked will perish. ~Proverbs 10:28 ESV

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February 9, 2014 · 11:55 pm

Carried in Love

“It happens every time,” I say in tears with a mouthful of a Fiber One bar. I take a drink of my re-heated coffee, then continue, “I do so well; then the week before my doctor appointments, I just don’t!” Of course, I also state in frustration that I think it’s a conspiracy. I am not sure what the case is (definitely not a conspiracy), but this situation does seem to happen most often around doctor appointments.  Maybe it’s just ironic.

This morning was like any other Sunday: a rush getting ready, downing a small breakfast amid hoping to leave on time, but still needing to put on my socks and boots. In my hurriedness coming out of my room, carrying my winter coat and boots, my right leg locks at the knee as I round the corner in which throws me off-balance. I tumble-down backwards, dropping everything and hit my head on the floor. My parents were still here, and within a minute of falling, Dad came to the hallway and assisted in picking me up off the floor.

Just a few days earlier, I spent a whole day conquering my file box! (Also termed: The Twilight Zone!) After hours of organizing and sorting, the results are rewarding. All that was left to accomplish was shredding a stack of old bank statements. Dad un-jammed my shredder and I started happily shredding away! As it starts to fill, the shredder gets a slower speed and makes noises (unknown to me.) Dad comes in and tries to tell me this, but I defend my shredder saying it is able to shred up to so many pages and that it is just full. Not really implying that I need help emptying the bin, Dad makes his way to help me anyway. Sitting on a stool, I start to stand to get out of his way, but result in slipping…knocking the stool over, I too stumble backwards. It was like a crash-landing. I have never hit the floor backwards so hard ever before, and in a moment, I was in the worst pain and instant tears. But Dad was there, and helped pick me up.

As he helped me get comfortable on the couch, I started to feel bad for bickering in justification the few minutes before the fall. Seemed so silly; and Dad finished shredding my papers. This morning, after finally getting my boots on, I realize that I probably shouldn’t drive in the snow that was piling down. I text Dad and tell him I am just going to stay put, safe and sound. “After all that,” I mumble as I go ahead and just brew a new pot of coffee. But I am glad I stayed. My morning readings brought me to ponder God’s unfailing Love, as I thought about my Dad having been by my side after each fall. Truth: Dad won’t always be there, but God is ever-present in times of trouble. (Psalm 46:1)

Missy [his daughter] could fall down and hurt herself, even if I’m walking right there beside her. That doesn’t mean that I allowed it to happen. She knows, as far as unconditional love, I’ll pick her up and I’ll carry her. I’ll try to heal her. I’ll cry when she cries. And I’ll rejoice when she is well. In all the moments of my life, God has been right there beside me. The truth of God’s love is not that he allows bad things to happen. It’s His promise that he’ll be there with us when they do.

–Clark’s response to Marty’s question: Why does God allows bad things to happen to decent people?

Love Comes Softly. 2003. Based on the book by Janette Oke.

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February 7, 2014 · 11:26 pm

Moving Forward

Today was my MRI. You have to understand why I thought it was kind of a big deal: for the past four months, I have had but only one small and local doctor appointment. That’s it. 🙂 Can’t you see how joyous this is?

While I was getting ready, I did some thinking: The past four months of living without having to think of myself all the time has been the most rewarding experience–unlike during chemo when I had at least two appointments every week, plus specific times for taking chemo, and still, log every detail for doctors and research team. Chemo was not helping me. It was controlling me and after much prayer, I decided to end. I know this is not a situation or conclusion that other chemo patients can decide. But this was, and still is, my final decision. I truly am thankful and appreciative of all the care that is put towards my condition and know that it is always available to me when help is needed.

Since then, I cannot deny that I have painfully embraced this fact that my physical body could indeed change drastically, causing me to become fully dependent on others for my needs. It is not easy to comprehend. But isn’t that faith–surrendering fully to God, dependent on Him to meet my every need? I am nothing without His strength; I can’t deny it. Doctors look at my scans and compare what they see evolving inside verses my body’s functions and performance on the outside. The contrast should be labeled as “impossible,” but that is not a word in God’s vocabulary. Possible: I know that it’s true when I get out of bed each morning.

I am a living; As I see now, there is only one direction in which I can continue regardless of MRI scan results–and that is forward.

I came that they may have life and have it abundantly. ~John 10:10b

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February 1, 2014 · 11:59 pm

Solid Grip

Normally when I accidently drop a medicine on the floor, one of my family will hear it land and come quickly to the rescue. No one saw or heard me drop a pill tonight, and instead of asking for help, I tried to pick it up myself.

I don’t say coincidence, but my dropping of pills is always the same two and they never seem to end in causing me troubles: the first is skinny, yet cylinder shaped, and has the smooth outer wax-looking covering making it slippery for my numb fingers; and the second pill, well, it just so happens to be the exact same color as the wooden floor and when it drops–it’s transparent. It’s a daunting task to find this pill, and when I do, it is usually if I tip my head at very awkward angles or the lights suddenly reflect a shiny stud on the floor. I take both these pills twice a day…some days, like today, are just aggravating!

When I dropped the former of the pills this morning, I was alone. I tried with no success to pick it up with my fingers, but after a few minutes, resulted in grabbing a spoon from the drawer and pushing the pill into the middle of the utensil. Pulling myself back into standing position, balancing the pill on the spoon had me feeling as if it was a raw egg. 🙂 The spoon-retrieving-medicine was a success, so when the pill dropped again tonight, I started the same process, except this time first asking Marcia for a spoon. It was then Dad realized what I was doing and came to the rescue.

It must not have been my day for medicine, because shortly after this I set out to refill my day caps for the coming week. When I got to the latter of my two trouble-making pills, I didn’t drop just one…but two, as they slid out of my hands. I did the usual awkward angle head positions and found one, but as I gently swept it closer to me in order to pick it up without falling off my chair, it speeds away and goes back into transparency. It’s then that I let out a disgusted, frustrated: “UGH. Good grief!!” Mom came to the rescue and found both.

I had one more refill, but in this case, the pill is never the problem–the bottle cap is the problem. It is one of those “squeeze the cap on the sides while you turn the bottle,” and I normally don’t bother to try anymore with opening it. I can’t remember the last time I opened a bottle like this normal…it has to be a few years; the atrophy in my thumb muscles played a role in this long before numbness was a problem. My hand format consists of placing the bottle in my left hand–one of the “push here” spots rests against the bone of the thumb that stands out since the atrophy; and the other “push here” spot, I place my pointer/index finger and squeeze as hard as I can, while twisting the bottle with my right hand. It never started to become a major problem until the numbness increased.

Maybe it was my frustration of medicines today, but as I tried to open it, instead of giving up right away, I set out to try something else. I unsuccessfully tried using a pair of needle-nose pliers, but in this attempt I noted that most of my problem was not the “push and twist” of the cap, but my holding the bottle firm in the right hand. So, I found the non-slip rubber jar opener pad in another drawer and just tried again to see if I could open the medicine bottle.

It was not easy, even with the assistance…but after a few more big squeezes and strains, the bottle opened. And I cried. In that moment I felt victorious. I should see the same in life…that even the most difficult days are worth living, because I am held firm in God’s hand.

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January 27, 2014 · 2:23 pm

Thankful for Today

I didn’t take much notice of the blue skies and appearing sunshine when I first woke this morning. Remembering the days of summer when waking between 6:30-7 A.M. was pure joy (and total spontaneous…), I groggily pull myself out of bed around 7:40 after smacking my snooze button at least three times prior. Stanley Steemer was coming between 8-9 A.M. to spot clean the carpet, in which my room was one of them. I text Mom to tell her I am awake (though not desiring to be out of bed yet) and get ready.

As I enter the kitchen, Mom has the coffee brewing and I grab a quick bowl of cereal for breakfast. “I could be more awake if I went to bed earlier,” my thoughts conclude. This past week, I have had many late evenings. If I did not want to blame myself, I would put blame on the authors who write incredible novels. I started one Saturday evening and simply could not put it down! Last night I had about eighty pages left and knew if I didn’t conclude the story, I wouldn’t sleep anyway. I am known to finish good reads such as this at the wee hours in the morning, but last night, it was just until 1 A.M.

Blue skies and sunshine were not highly celebrated by my family or I while living in Colorado. In fact, like the mountains, I simply took the combination for granted. After moving, the skies proved very different! I can handle the long streaks of rainy days, but what gets me is the days where the sky is just white: no clouds, no sun, no blue. Just white, as if a drywall has been placed between earth and the heavens. Not so today! Blue skies and sunshine. As I reenter the kitchen a few hours later for lunch, I tell Mom: “These kinds of days give me energy!” And sort of pump my arms in cheerleader fashion.

Last week I called my good lady friend for a chat. Gayle is more like another grandma as she has known my family and I even before I was born. Her godly wisdom and sense of humor are something that encourages me every chance we get to talk (or when I visited her during Denver days.) She is the only mid-eighties woman I know that can chat more about football than even myself! No offense to my family, but I don’t get very far when discussing the topic with them (except for my brother-in-law!) 🙂

So when I called her, our first order of talk was indeed football, seeing as the Superbowl is approaching this coming Sunday and we are both Broncos fans! We talked about family and the holidays; current news, weather and a few fun things coming up. Eventually we got around to discussing health–she has Diabetes and myself with NF2. About the only thing we have in common is bad balance and occasional falls (but no broken bones!) We near the end of our conversation and I briefly mention the dates for my upcoming MRI/doctor appointments. I share a few thoughts on the matter and tell her that there is nothing I can do at this point besides take life one day at a time and live it to the fullest and to the best of my abilities while I can.

She listened then responded, “Well I’ll tell you…I am just so thankful that you are still able to get yourself around and take care of yourself and not confined yet. I am happy to hear that.” I got a few tears in my eyes, “Thanks Gayle.”

When I commented to Mom about the sunshine, blue skies and energy, my mind flashed with thoughts of Gayle. She was thankful for my health, though we had discussed even the changes that are spiraling downward. How often do I get out of bed and pray simply, “Thank you for this new day,” or “Thank you that I can still get myself out of bed and prepare for the day.” In honesty, I don’t…especially on the white days. But I desire to start a new praise habit…one of thankfulness in the morning, no matter the colors of the sky.

Blue skies that take me back to being a child
Trees with leaves that turn the colors I love
A heart that’s beating to Your melodies ringing
And I am a miracle ’cause heaven is a part of me
And You are the song that I’m singing

“All Things New.” Watermark. Rocketown, 2004.

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January 26, 2014 · 10:53 pm

Future Winds

Quite frankly, I have not seen anything like the winds we encountered here yesterday. At least not in the winter, or since moving. It was like watching a National Geographic special on PBS about Antarctica–the winds thrusting the snow all around in fierce fashion. It was pretty insane.

Growing up, it was just a known fact: spring meant wind. And with high drought, and living among potato fields, this meant a lot of dirt, sometimes dirt devils too. Oh, and did I mention that we lived an hour from The Great Sand Dunes National Park and Reserve? From where we lived, the dunes made a tiny gold outline against the San Juan mountains. But entering the park, the dunes are a mass of towering hills of sand. When the wind started to blow, whether you were climbing the peaks or not, often the hot sand would swipe and tingle your arms or legs–not the greatest feeling, but rolling down the dunes was always worth strenuous upward trek.

There are several other notable times when strong winds were evident. Once, during VBS, I was leading the Sing and Play at the end of the day, before our youth pastor took over with the concluding end lesson. The wind that day was so powerful it knocked the power out of most of the town–so there we were…around close to 200 in the sanctuary with no lights, microphones, nothing. Of course most of the kids think it’s great and thankfully it didn’t scare the little ones too bad. I got some help on stage in the vocal area, and we sang a capella before Josh took over–he didn’t need a microphone anyway. On our way home, we passed by a grove of huge trees; one had simply snapped like a twig under the wind.

The summer of 2009, I moved to Denver as that Fall semester would be my last of college days. Between part-time work and volunteering once a week with the street church kids, I was finishing the last of my Gen-Ed courses online (which I enjoyed and should have taken more advantage of earlier…but no regrets.) Me and a few roommates from school rented an apartment a few blocks from campus. We didn’t have internet set, so it was my routine to swing by campus on my way home from work to submit assignments or fill in my two-cents of discussion in the forums.

I had permission from the security office to stay later than when the computer labs closed and often they came around to check on me, which I appreciated very much. One night, it was stormy but I had to submit a paper by midnight. I text my roommate that I would be coming in late so if she was going to bed, don’t bother leaving a light on for me. I get to work and being at the bottom of a drafty stairwell, don’t think much about the wind and rain, until I glance out the window and see massive hail balls pelting my car and the cement. My phone starts vibrating and I start receiving all these texts from my roommates telling me to stay put–the tornado siren had just been heard. Not by me.

I still had my paper to finish, so I moved a chair to the middle hallway’s door and sat under the frame structure. I figured that was the best I could do and continued to type. I submitted my paper by 11:58pm. Barely made it! I was surprised that I even had a car when I went outside; I had parked under the biggest tree on campus which had lost many large branches in the wind. I drove back to my apartment with only a few dents on my hood and minor cracks in my windshield.

…

Last night I watched a few old episodes of 19 Kids and Counting on Netflix with Mom. One episode we watched was when the Duggars announced their exciting news of expecting another child, but at 18-weeks, Michelle (mom) has a miscarriage. A very heart-breaking episode to watch. As Michelle talked with tearful eyes about their time of mourning and grieving the loss–she also that they would see their little girl again someday in heaven. They were given peace.

One comment that Michelle said stayed with me. I woke this morning deciding that yesterday’s wind was a bit parallel to what she discussed. She simply mentions that if we were given the ability to see into our future, we most likely wouldn’t want to face it, at least not the hardships. So I thought about my own life–if I saw my future ten years ago to what I am now, I wouldn’t (then) want to face this…all the changes the disease has caused. And I can say now that I don’t want to see my future, as much as I have tried to plan my course in the past.

The future is like the wind–invisible; yet I am certain there will be winds of pain and sorrow, but also joy, hope and peace.

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 beperfect and complete, lacking in nothing.

If any of you lacks wisdom, let him ask God, who gives generously to all without reproach, and it will be given him. But let him ask in faith, with no doubting, for the one who doubts is like a wave of the sea that is driven and tossed by the wind.

James 1:2-6, ESV

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January 17, 2014 · 11:59 pm

Soup on Snow Days

Today is snowed. A lot. I called my grandpa after a late breakfast and as we finished our conversation, he asked if I was getting ready to have lunch. “Not yet. I am still finishing my coffee.” Of course, I didn’t tell him that it was my second cup. But I did already know what I was planning on the menu for lunch: soup and a bagel. Comfort food.

As I was organizing and sorting my books this week, I found a devotional book that I started last Fall, but put back on the shelf without finishing it. It’s titled, 66 Love Letters: A Conversation with God that Invites You into His Story, by Dr. Larry Crabb. Dr. Crabb writes this particular read in a first-person dialect between himself and God. Taking each book of the Bible as a love letter from God, Dr. Crabb asks the question of what we are hear and learn from the love letter; how does it fit in our lives today? And what about the bigger story: God’s story?

Yesterday, I read Part Three: Living in Mystery with Wisdom and Hope. This section included Job through the Song of Songs. In this recent past week, I have had more thoughts of my upcoming appointments and health. In honesty, I think I am seeing a little glimpse of what bigger physical changes are happening, yet still trying to ignore the fact that it is actually happening. As I read Love Letter Nineteen: Psalms, God (in conversation with Dr. Crabb) states,

In the Psalms, I reveal what life is like for the person who lives in the storm with his eyes fixed on me. As you read the Psalms, hear me say this:

Face the hard questions that life requires you to ask. Gather with other travelers on the narrow road, pilgrims who acknowledge their confusion and fears. Then, together, live those questions in My Presence. (Crabb, 91.)

My first response–“I don’t want to face the hard questions.” It has been leading up to this point all week–just from different events, conversations, thoughts or songs coming to mind, and things read in other books–but this morning’s conversation with my grandpa helped finalize the point: facing my hard questions is inevitable. But I don’t face them alone. We all face hard questions about the circumstances in our lives. The true comfort comes is knowing that we’re held and forever in God’s Story.

P.S. This song came to mind this week: “Held” by Natalie Grant.

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

Crabb, Larry. 66 Love Letters: A Conversation with God that Invites You into His Story. (Nashville: Thomas Nelson, 2009.)

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January 11, 2014 · 11:59 pm

My One Word for 2014

From my last post, one can read about the good times my family and I had while being all together for the first time in over a year. It was a phenomenal way to kick off the new year and I wish it could have lasted longer!

Over the week, however, I really struggled with the battles waging in my mind. I know–you will tell me something like, “Mel, you are beautiful. Don’t believe the lies that say otherwise,”–but right at the start, looking around at my beautiful family talking and laughing over our Spaghetti Warehouse dinner..I just wanted to burst into tears. I felt different, distant than everyone else. It was only the beginning of my “happy face” week.

I think in part it is frustration at my current hand condition. As the numbness increases, so does the weakness and curling of my fingers. Tasks that should be fast, are now taking me longer or requiring help. One that is most frustrating of all is putting in my hearing aid. Some days I just can’t, so I either go without it (which I do okay in lip-reading) or someone else puts it in for me. It was putting in my hearing aid before our late lunch on Sunday that caused me to get so frustrated that once I finally got it placed in my ear, I looked in the mirror and told myself, “Just put on your happy face.”

I know–I can be honest with my family and should not hide emotions, but I get tired of it being about my health. I feel my conversations with people are most often about my health (if they ask about it) or books, coffee, or small talk such as this. My first engaging conversation I have had in a long time was when we came home from the Creation Museum the Friday before and we started discussing Darwin, natural selection, and evolution. Don’t get me wrong, the car ride to the museum had us in conversation of memories–hilarious–but memories are different than deep questions (if you get what I mean.) Back to Sunday, the battling of emotions and lies in my head did not fool my sister, Marcia, as I came back into the kitchen.

She asked what I what I wanted to drink and I snapped, “Water,” then headed to Mom’s bathroom to see if she had a hair clip. Not being able to do my hair anymore was also bugging me. Next thing I know, I am a sobbing mess and Marcia finds me like this–anything but happy. Ironic, just releasing those anger and frustration thoughts helped me release the tight emotions. Marcia said that we are family–I don’t have to put on a happy face for them. Easier said than done when you battle “burden” thoughts for over ten years. Mom found us and helped me put up my hair. The evening turned out to be one of great memories and laughs. With a true happy face.

Not even a day later, I find myself in the worst possible situation I have ever had physically. It’s not G-rated and I don’t wish to discuss it…but let’s just say that night I was sick, and I mean literally sick. It was awful. I have never felt so humiliated even though I was at home just with family. Without asking questions, Marcia and Mom set out to assist me, as once again, I am a sobbing mess. I even said, “This is when I hate my body.” And I meant it. While helping me, and cleaning up at the same time, I am not sure how the conversation flow happened, but I remember Marcia looking up and saying, “Because you’re family and we love you.”

Holley Gerth–author, speaker, fellow blogger–wrote a post, “What’s your one word for 2014?” It was sent to my inbox the morning of the humiliating incident evening. I read it, but I did not start to think serious about something like this until a few days later. I have never claimed a life verse or a yearly word. I know others who have, but especially a yearly word–seemed like a resolution to me and I never meet my resolutions, thus, I don’t make them at the beginning of the year. I just used that as my excuse, I suppose. Maybe it was something about Marcia’s comment that caused me to see different.

My health is something that affects much greater than myself. For my family, I can’t grasp the depth of their sacrifices on my part due to health or what it means for all of us in the future. But what I saw the night of my most vulnerable physical state was Love. It was sacrifice. It was pure. We say the word “love” all the time, about anything, but are we really giving ourselves away in the process? In thinking of Holley’s question, I found myself trying to find the “perfect” word for my year of 2014. It didn’t take me long to oust the perfection part and just gather a word. I thought of many but found myself returning to this: there is only one perfect Love and through my sister and Mom’s actions, I saw Jesus.

That is Love.

What is my one word for 2014?

Love.

Little children, let us not love in word or talk but in deed and in truth.

~I John 3:18

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January 9, 2014 · 11:59 pm

Mrs. Dash

In the classic Christmas song, “Rudolf, The Red-Nosed Reindeer,” the first of Santa’s reindeer mentioned is Dasher. You must be thinking, “Mel, we are past the holidays! It is a new year already!” That is exactly my point…the new year took off with a dash! 🙂 We kicked off the year by picking up my sister and brother-in-law from the airport…and with all family members and spouses present, we enjoyed a nice meal at the Spaghetti Warehouse in Dayton, then came home to celebrate Christmas.

Yep, January 1, 2014 was a fantastic day and the beginning of a week filled with fun! We played games, shared memories and had good laughs, took loads of pictures, drank almost all the hot chocolate in the cupboard, played more games, “owl family” late nights resulting in late mornings and breakfast times, and took a short road trip to the Creation Museum in Petersburg, KY. 🙂

At the Creation Museum, there was a small room on the lower level called, “Dr. Crawley’s Insectorium.” Now, if you know me, I am not a bug, insect or spider sort of person. Snakes I can handle if they slither slowly, but insects…yuck! However, because we were there, I wanted to get the whole museum experience. Besides, these insects were dead, so what was the harm in viewing them? The first of the display boxes contained locust, crickets and katydids. The plaque described how they form “God’s choir,” as they make beautiful chirping noises when using their mating calls to attract females.

I thought a few things were interesting: a) A female of the three insect species listed has to listen and distinguish among the chirps which mating call is for her and then respond; b) Out of all bugs and insects, only these three are listed for their beautiful noise; and c) The plaque also mentioned reference to prophets in the Bible, one being John the Baptist, and their eating locust. I didn’t think much about the eating part until the end of the museum tour and day, in which Mom, my brother-in-law and myself, found ourselves finished a half hour before everyone else. With nothing else to see, we went to the bookstore to look around and wait.

My choice of two post cards placed me over at the cash register and after I paid, I see at the side the selection of chocolates (not having anything to do with the museum…just a treat!) and other candies. Of course, the suckers with bugs in them would not my choice of a tasty treat. Under the candies was a shelf that had little boxes of flavored locust, but I didn’t actually realize they were real locust until I picked up the sea salt flavor and read the cover. Tempted, I almost purchased the sour cream & onion flavor, but right when I decided “no” in my mind, the store closed and we left. So much for starting the year off in a bold fashion. 😉 It may have had too much salt anyway…

Right before the new year, Dad and I discussed my left ankle. It has been swollen for quite sometime. When I sit, I don’t always prop up my feet, which doesn’t help any, but the fact is that I needed to try something new. I already deal with osteoporosis and numbness (which I have no control over), but the swelling I could try to bring down. The simple word: salt. Oh how I just love salt! So being told, “No salt,” was a sad experience at first, because I literally thought I could not have any. I was reassured that I can still have salt. If you think about it, salt is unavoidable-it is in everything! It is not a diet or new year’s resolution, but my new restriction was simply that I just can’t add salt to my plate and must practice self-control.

The tumor on my 5th nerve affected my sense of smell, which affects your taste. It has to be a very strong flavor or scent in order for me to smell and/or taste it. Every so often, I will get a giant “smell-wave” for a split second and it literally will take me by surprise. If anyone is around, they hear about it! With tasting food it is different. The typical routine is usually putting on a lot of salt and pepper just for a taste. Without salt, foods like vegetables can be pretty bland. That is where Mom suggested the substitute, Mrs. Dash. It is salt free and has a bold flavor!

Limiting my salt seems to be rewarding, as I have noticed the swelling decreasing. The whole experience has also got me to thinking of my own life. I have been out of my typical morning routine, coffee and readings, which I see is starting to result in becoming a spiritual life that is bland. I still have salt–but like my food restriction, I am not adding any to my life–not seeking the boldness that God intends…and I feel no purpose. It is the new year, and I seem lost. Praise God–He is bigger than my fears, bigger than my failures, bigger than my future here on earth.

He is like Salt–Unavoidable; In Him, I have no need for restrictions.

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December 29, 2013 · 11:58 pm

I feel Blue

And I look blue too–at least before I scrubbed my hands, washed my paintbrushes and changed my sweatpants; I had blue paint all over them as well. I wasn’t trying to be messy, but it seems the darker the paint color, the more prone you are to dropping the paintbrush or accidentally rubbing against the table where the paint is wet from the outer-border edges or my favorite: opening a tube of paint and have a huge blob splatter on your hands (I don’t bother with fingernail polish much anymore). And a painter’s secret–Never open a tube of paint over your canvas. You’re just asking for trouble. 😉

Tonight I was finishing the bottom portion of a sky/sea painting for my uncle. I selected my shades of blue hues, a few greens, such as a sea-green and teal, and a silver shade for the finishing touches. I sat down to sort of think about what brushes to use and stroke styles. My mind wanders and I just ended with having a good cry. It was a bit of pity for myself (hence, “I feel blue,” as in the downward emotional state) mixed with a bit of anger, and denial. Yep, that is me at the moment. The year wasn’t supposed to end this way, but it did…and is.

I was doing just fine. I know my body has changed even since ending chemo in November. I know I need to sit down and be serious in thought about important decisions…about changes that could be in my future where I will need more help in daily living. I know I need to talk more with my parents and siblings about such things, but don’t know how..I don’t have the words or the thoughts. Can’t we all just ignore it? Since November’s end of chemo and all doctor appointments, I have been able to breathe–no pressure to think about health at all times or record it like I did during chemo. There were hard days certainly, but to not think about the next MRI or certain doctors I will have to see and the questions they will ask was rewarding. I still want to say that in my decisions that I have lived with no regrets.

Ending the year of 2013 could not be better: From a relaxing Christmas with the family to having relatives visit on their travels, I anticipate the New Year Day as my sister and brother-in-law visit from Colorado for a week! 🙂 But my excitement got short-lived as they sent me the papers for my next MRI and doctor appointment dates. The reminder that my days of living in denial are closing in has made me angry; last night I was so upset I wanted to throw up or scream. I just cried myself to sleep instead. It kept coming back to time: “You have one more month of freedom.”

In my head, I start to hear the questions I know I will be asked and I start to give my answers. And that is where I feel blue…because I know my body has changed; I live in it–I know my strengths and weaknesses. I know my balance continues to worsen and my hearing is in its final stages. What I tell my doctors, what my parents tell my doctors and my MRI scans are considered “me” and that makes me frustrated, because I want doctors to see past the little finger, arm and leg strength tests and see me. I want them to see me and how I try my hardest opening things before asking for help, putting my walker in my car, doing laundry or painting. I guess my fear is having decisions made for me, as in the past. And I grow discontent with my body. I just want to tell it to stop changing, but I can’t control those decisions either.

This mornings sermon was from I Timothy 6:6-11:

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. (verses 6-8).

Contentment doesn’t pertain only to material possessions (although that was mostly what was discussed.) We also read from Matthew 6:25-34, in which we are reminded not to be anxious, because God knows exactly what we need and will provide. Normally when I read these passages, I stay on the material possessions path, but today, Pastor Joe also started discussing health; It caught my attention. He read a passage from the book of Job and made a point that we can also be content with our bodies, no matter the changes–God is in control. You would think after a sermon like this that I would have a different frame of mind, but it is going to take a lot of prayer to return to that place…where I am content, where I fully trust God with my health, where I live fully with no regrets.

When everything is wrong
The day has passed and nothing’s done
And the whole world seems against me
When I’m rolling in my bed, there’s a storm in my head
I’m afraid of sinking in despair.

CHORUS:

Teach me, Lord to have faith
In what you’re bringing me will
Change my life and bring you glory

There on the storm I am learning to let go
Of the will that I so long to control
There may I be in your arms eternally
I thank you, Lord, you are the calmer of the storm.

Downhere.”Calmer of the Storm.” 2001.

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