Category Archives: Uncategorized

June

Turn the calendar page, another month is here,

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It’s hard to imagine that it’s already been half the year.

Flowers, gardens start to appear,

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Bringing colorful hope of the future so near.

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May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope.

Romans 15:13, ESV

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NF Awareness Month

Well, it came and went–May, as I forgot and was reminded yesterday–was NF Awareness month. It was also Autism Awareness month. I don’t find it necessary to tell you facts or stories of NF–you have already read my blog entries. So, I will end this NF Awareness month with something different–none of the talk, such as, “This is a side effect of medicine or tumor function;” But talk of living life with NF2–because, I will tell you plain, it has, is and will continue to change my life.

Once in a conversation with my friend Jess, we discussed our thoughts and feelings about the topic of researchers finding a cure for our disease. I thought about it for a long time and finally responded to her email, saying that I cannot imagine life without it. Please don’t consider me a strong person, because if anything, this disease knocks you down. There are more moments were I detest my own body, wishing that I was something more rather than being thankful for what I have–in other words, as my body continues to unwind, I feel left behind.

Yet looking back at the road thus far, I am aware that life has been filled with divine moments. Moments where God met me in my lowest state and helped me back to my feet, never leaving me behind. And so life continues–to the end, which is the beginning of Life.

He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.

Revelation 21:4

PS. I believe that God has given doctors and researchers the skills, resources and knowledge to help individuals suffering with illnesses, such as myself. Although at the current moment, there are no treatment options available for me, I still desire to walk with hope in the Cincinnati NF Walk, June 22nd, and support the further research of NF, along with those persons in which the research impacts through results, such as new treatments. If you would like to donate for this cause, there is still time: Team A Mile in Mel’s Shoes

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To Feel Numbness

This past Mother’s Day, we decided to treat Mom with a picnic at the state park just down the road. It was such a lovely day! After the Frito taco style lunch, everyone played some outdoor games…I focused on Frisbee and amazed myself how good I could catch while sitting on my walker. Throwing it back to another person was a different a story. The day had me thinking of years past where we would take family picnics in the mountains. But instead of picnic birds and cute chipmunks joining the feast, we just had bugs. While Melissa’s pup, Basho, tried to eat a caterpillar, I was distracted with a few baby spiders crawling around at the end zone of our picnic table cover.

“They’re in nature and they’re so tiny,” I kept telling myself. Mom and Dad have done a pretty good job of keeping spiders out of view in the house–it has been a while since I have even seen one so close. I think the time helped calm my previous state of hyperventilating in arachnophobia; even watching The Hobbit: The Desolation of Smaug. was more tolerable (of course, Marcia and I were a little distracted too at that part, as we were attempting to get my caption specs to work properly!)

Anyway. back to Mother’s Day, the sun was shining and not yet having my sunglasses on, I was in squint mode trying to keep up with all the lip-reading conversations. Up until this point, lunch had peacefully survived without epidemics of girlish squeals of bugs–but I broke that trend when all of a sudden, I realize that this is no cataract fuzz in my right eye view. It was a spider! And it was no tiny baby one at that either! My first reaction–the glasses got thrust off with my left hand and shoved into Dad’s face (well, more like over his plate that was still full of Frito taco lunch.)

“There’s a spider on my glasses!!” Dad takes my glasses and flings the spider off into the grass. I continue, “Gross! I am infested with spiders!” Still disgusted, it occurs to me, “That could have been crawling on my face!” And Marcia confirms, “Well it was on your arm.” Yeah, thanks for the warning.

I am not certain as to why numbness is a side effect of the tumors. I understand muscle atrophy and weakness, but not the numbness or why/how it also affects the muscle weakness too. I can’t even tell you when the numbness first began…I don’t remember. All I remember is that it started in my left ring finger at the tip. Slowly over time, it progressed to other fingers in the left hand and my toes. A definite turn took place the summer of 2010 when the tumor on the 5th Nerve doubled in size, suddenly leaving me with intense jaw pain. I first thought it was TMJ, as others in my family have the condition, but as soon as I felt the first tingles of numbness I knew it was tumor related and it was confirmed by the MRI results.

Numbness in the face was strange at first–now, it covers everything: forehead, gums, cheeks and neck. As of this past week, I have confirmed numbness in  the upper left lip. Mom says it is not noticeable, but if you studied my face closely, you can see the lip is a bit poofed and that makes the lip slide to the right (just a tad, but still, I see it.) It’snot just my face…my feet (can’t really wiggle my toes anymore), whole left leg and right arm and hands…areas on my shoulders and back too…numb.

It is hard to describe “numb.” One would assume when you’re numb that you don’t feel anything. Almost but not quite. I feel things, depending on what it is. Just examples: I feel the ground when I walk and I feel what I touch with my fingers (minus the right pinky and my grasps are very weak); I can’t feel temperatures in the hands or feet, so it is hard for me to tell if my feet are really cold or if the plate coming out of the microwave is hot. Numbness tingles like when you come indoors after being outside on an extremely cold day–the thawing effect. Numbness is heavy. Numbness is a pain (although too figurative, I am implying the literal definition.)

As I was thinking of numbness this week after confirming it in my upper lip, different situations came to mind. I found myself, in numbness, with a burden for those who hurt deeply (physically, mentally, emotionally, spiritually.) Whatever state, I realized that people in immense pain use “numbness” (or the forms of action in a way to numb the pain), to escape pain (or the hopes of escaping their current suffering.) But you never escape through numbness–because you feel numbness…it is heavy, it is a pain. Numbness (or the denial of the situations/conditions one is living) is not the answer.

“Held” by Natalie Grant

(*Second verse)–This hand is bitterness.
We want to taste it, let the hatred numb our sorrow.
The wise hands opens slowly to lilies of the valley and tomorrow.

(Chorus)
This is what it means to be held.
How it feels when the sacred is torn from your life
And you survive.
This is what it is to be loved.
And to know that the promise was
When everything fell we’d be held.

Bridge:
If hope is born of suffering.
If this is only the beginning.
Can we not wait for one hour watching for our Savior?

 

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The Garden of Roses

They say that walking is the best exercise, and for myself, I agree one-hundred percent. This weekend was too nice to stay indoors, so my parents and I ventured to a new state park on Saturday for some walking of trails. The first trail seemed very nice; when I think of parks, this is what I always have in mind: paved trails, trees that provide shade and the occasional bridge walkways where thick underbrush or tricking streams are underneath your feet. This one had it all and the destination of the first trail was a waterfall. No sign mentioned sand (like a beach.) We near towards the area where the falls is located and I mention that the area looked much like Mesa Verde, minus the ancient cliff-dwelling houses. Then I get my walker stuck in the sand.

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There was a set of stairs (far off behind the rock in the picture) and realizing walking in the sand is worse than grass, I told Mom and Dad that I would take a rest while they saw the falls. It was an enjoyable sit…and I was able to walk part of another trail that night too.

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I probably should have taken a nap on Sunday, even though I did “rest” by simply sitting and reading, but I am not sure if that would have fully helped yesterday anyway. Scheduled for a fun day at Melissa’s, we started with a delicious brunch: gluten-free waffles, fruit, bacon and David made scrambled eggs with green peppers and onions (yum.) Eating and chatting outside on the back patio–and not drinking as much as I should have–I think my dehydration may have started then.

Columbus is filled with many pretty parks. We chose Whetstone Park, because they have a Park of Roses in the midst of it all. Maybe we were trying to make a loop, but we seemed to start randomly just by parking and cutting across the grass to the paved trail. Grass entirely wears me out, so by the time we get to the cement, my legs are already saying that they’ve had enough. Basho was with us and seeing him thoroughly enjoying himself–running everywhere, barking at the bigger dogs, never begging to be picked up or have a ride in my walker–gave me humor and something to enjoy besides thoughts of my slow walking.

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Once we reached the entrance to the Park of Roses, I was in my slowest state of walking. In every step, my mind kept saying that it didn’t want to take another, but then my feet would…like an automatic response to the word walk. We passed by the herb garden and I saw the perennials from a distance. I had greater expectations for this section, especially the roses; we were a few weeks early for full-bloom, but there were a few rose bushes in bloom and you could see the start of the rose section blooming as well.

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I didn’t venture far off the path, but as I am struggling to get to a bench to sit (that’s me in the left hand corner of the picture) and take a drink of over-needed water, I thought of Jesus. It just came to mind–all I saw was bloodied, dirt-stained, sandal feet moving forward one step at a time. Jesus wasn’t pushing a walker on a paved or grassy path; beaten beyond recognition, he was carrying the heavy wooden beam of his cross and walking up a hill (which I imagine was just a rocky, dirt path.)

He walked each step bearing the weight of my sin, my physical suffering. He walked each step in Love, with a promise to never leave or forsake me if I placed my trust in Him alone.

He walks with me to the end, until life forever in His presence.

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***All pictures taken by Bonnie Pinkerton***

 

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Seeing Ahead

Last week I saw the surgeon ophthalmologist for the cataracts in my eyes. After a whole day (literally) of sitting in the waiting area or the exam rooms, I left the hospital with extremely tired eyes. Cataracts plus dilated eye drops does not equal a good equation. 🙂

I haven’t had an eye exam in close to two and a half years. When I see my regular ophthalmologist every four months, it is only a visual field test and a quick shining of bright lights in the eyes as he checks the optic nerves for signs of swelling. No dilating, no tests where they set lenses and click back and forth–in which you say whether “one” or “two” is the clearer option. Simple and fast.

That being said, this eye appointment was interesting. Not only were my eyes so dilated (you could hardly see the color of my eyes), but also the bright lights in the eyes were making lip-reading a colorful experience. Everywhere I looked seemed to be a mesh of sea-green and magenta. I also realized that taking the option “one” or “two” test, I needed assistance; if I was viewing the letters on the wall with Star Wars looking vision specs, how was I to know which number was with which lens? I solved the problem by explaining that Mom should stand next to me–when the nurse flipped the lens, she would say the number. Mom would then tap my hand either once or twice and I would say which option was best. It was like a signing interpretation in the dark!

When my optic nerves were swollen and I was seeing black spots in my vision, I started a medication to help keep the swelling stable. Even last spring when the MRI showed growth in 80% of the brain tumors, my vision was not affected and I am very thankful. Although, currently, I am not seeing black spots, seeing through a fogged lens is starting to annoy me. I am out of focus. A least at home I can squint; I was told not to squint when taking the “read the letters as far down as you can” test. Squint focusing was cheating. 🙂

The past few days, has been difficult. It is testing my patience. I left the hospital with a surgery date: my left eye will be corrected July 1st. It seems so long…the thoughts, “Can’t it just be fixed right now?’ come to mind. Maybe more so, because of all my health problems, this is one that can be fixed…it’s temporary, anything else I experience is a permanent loss.

This morning, the story of Jesus healing a blind man came to mind (Mark 8:22-26.) When Jesus first laid his hands on the man’s eyes, the man could see–but it was not clear: “I see people, but they look like trees walking,” (24.) It was only after Jesus laid his hands on the man’s eyes for a second time that the man’s vision was fully healed. I wondered what the blind man may have been thinking after the first time Jesus laid his hands on his eyes, or even the disciples who were also present. It is not important, but the story does show a testing of faith.

The answers to our sufferings may not come rushing in all at once; in fact, it is rare if they do. What I see ahead may appear hazed and out of focus, but it is temporary–one day Faith will be Sight.

Now we see things imperfectly, like puzzling reflections in a mirror, but then we will see everything with perfect clarity. All that I know now is partial and incomplete, but then I will know everything completely, just as God now knows me completely.

I Corinthians 13:12, NLT

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Everything I Am Not

In season three of The Andy Griffith Show, there is an episode titled, “The Great Filling Station Robbery.” In the beginning of the show, we find Deputy Fife (as usual) trying to bring the Mayberry jail to more modern terms with technology, though it is not needed. As the episode progresses, the Filling Station has a theft problem. A troubled teen named Jimmy had just been given a job there to assist Gomer in the pile-up of cars needing to be fixed while the owner, Wally, is away. Because of his troubled past record, Jimmy is blamed for the robbery. Andy takes the calm road and waits for the next evening to see what happens; Barney, of course, sets a flawed attempt of greatness to catch the crime in action and jumps to conclusions. At the end, it is Jimmy’s knowledge in modern technology that catches the true criminal in action, proving that he was not what everyone thought he was to be.

Although Deputy Barney Fife didn’t do anything to solve the robbery, the ending minutes can make you giggle when Barney calls his gal, Juanita, at the diner. In typical Barney-ego seriousness, he recites a poem:

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Juanita, Juanita…lovely, dear Juanit

From your head down to your feet,

There’s nothing half so sweet–

As Juanita, Juanita…lovely, dear Juanit.

Oh, there are things of wonder of which men like to sing.

There are pretty sunsets and birds upon the wing.

But of all the joys of nature, none truly can compare

with Juanita, Juanita…she of beauty beyond compare.

Although I don’t recite poems comparing a sweetheart to the joys in nature, I have found myself lately in a state of comparison, usually in physical terms only. I can compare myself to others placing myself above them (judgmental) or placing myself below them (insecurity). Yesterday, I did both.

Being disabled, it is easy to find yourself in this position. I wonder if any other disabled individuals can also agree to this, but personally, I find myself comparing my physical and mental state towards other disabled individuals. There is always the persons that are far worse off than yourself; sympathetic thoughts towards that individual mingle with your own thoughts of gratitude…”I’m glad that’s not me.” And it is wrong.

On the other spectrum, there are those who you may consider not as bad as what you endure, so you place yourself above them in judgement. This is my downfall. In comparing myself to others in this way, it makes my own pains seem not as heavy. And it is not so much a condemning judgement, as it is maybe more self-pity; a “I can no longer do these things, but you can…” But even this thinking is wrong.

Comparing myself to anything other than what God holds true in my life can only be “half so sweet…” and I miss the purest blessings of reaching out to those around me.

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Strengthening exercises

Yesterday, I had a short appointment to meet my new primary family doctor. It is necessary for me to have a local physician to cover the basic grounds of needs that I may have, like getting my ears cleaned or lab work done. Most importantly, I needed a local doctor to regulate my blood thinner levels when I take an INR test at home. Because I am now at a certain age and new health care policies, some of the doctors from my team of specialists at Children’s can no longer see me as a patient. Not that they don’t want to see me (as I was told last Fall when I had my long day of seeing the team in rotation,) but I would soon be out of their age of expertise. My birthday early Spring marked that I am now too old. 😉

The local family physician will now be, in terminology, my hematologist (regulate INR levels) and my Genetics doctor (regulate my thyroid level and others like Vitamin D, etc.) I am very thankful that Children’s has an adult program for patients with extreme rare diseases like myself and that I am still under their quality care; but for the basicness, I must admit…having care so close to home is a nice aspect.

Going to the doctor’s office usually means paperwork. Even though I have been a patient before at this facility in town, due to new regulations (no doubt) and the fact that it was a new doctor/first time visit for me, we had a questionnaire to fill out before we got into a room and then had lots of conversation questions between the nurse and the doctor. I have been to my fair share of appointments, so I knew the typical routine: height, weight, vitals. Then medicines. Not to say that I am a genius, but somewhere along the way, I finally typed out all of my medicines with their full prescription names and doses. I even alphabetized them. (Genius!) haha. 🙂

Next you cover the basic family tree: paternal and maternal–parents and grandparents. Because my disease is genetic, my two older sisters also get looped in the information. Then it’s me. Where do you begin? We already covered the one sentence definition: I have NF2. I tend to talk too much and too detailed, so usually Mom or Dad give the basic rundown of history, starting freshman year of high school–the basics of treatments and how they affected my body and what doesn’t work in my body anymore. i give my two cents when needed, make corrections or answer questions.

I usually get asked three main questions: Do you smoke? Drink alcohol? Any chance you are pregnant? No, to all the above. So yesterday when the nurse started asking me questions, I was startled by the first, due to–what I considered–the randomness of the inquiry: “Do you drink caffeine?” Now understand, the past week there had been extreme late nights, awakening with early mornings and a bustle of family activity. Even yesterday, after an early morning farewell to Marcia as she heads West for the summer, Mom and I decided to do all our errands in Xenia before the doctor appointment. I like checking off my errands lists, but it leaves me exhausted..especially when in a hurry (my body doesn’t hurry.) “Do you drink caffeine?” Even after my two morning cups of Tim Horton’s coffee, obviously, my mind was not functioning.

I look at Mom with the, “I am quite confused!!” facial expression. “Caffeine,” Mom says. Reading Mom’s lips, the brain solves the equation: Caffeine was your morning cups of coffee. My eyes widen with energy, “Oh yes! I drink caffeine!” I get the reassuring nod and as the nurse continues to look at the computer screen, she asks the next question: “Do you exercise?” Fully awake and comprehending the question, I chose my reply wisely–“Define ‘exercise.'” 🙂 After a pause, I add,”because if you’re looking for running or crunches, then my answer is no. I do neck stretches, but things like walking up the stairs is an exercise for me…everyday living is an exercise.”

It’s true. Trying to stand with good posture or keeping my head upright is an exercise. Bending down to pick up something off the floor is an exercise. Folding my laundry, helping with the dishes or pouring milk from a new container is an exercise. Today, it was walking on the grass with my walker from the parking lot to the circus tent. These daily exercises may not be adequate enough to re-strengthen what the tumors have destroyed–in fact they’re not. But there is still a hope beyond the dwindling physical strength and it is more than adequate.

This is a sacred day before our Lord. Don’t be dejected and sad, for the joy of the Lord is your strength!

Nehemiah 8:10b, NLT

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The Open Door

“What’s the point of having a handicap sign on the door, if there is no handicap button to open the door?” My question was intended for Mom as we made our way into a store. A man nearing the entrance at the same time may have heard my blunt, yet honest, question as he held open the first of the double door entryway. I smiled and said, “Thanks!” as I passed on the way inside.

A situation such as this really is not something that is one to dwell on in frustration. I think I simply asked my question, because I am seeing this same concept more often now that I use and depend on my walker in public. But maybe that is where my frustration sometimes comes from–I think the concept of having a sign but no modem is misleading and I want to voice my opinion about it very loudly.

And this is where my thoughts collide. It is not easy for me to be disabled; sometimes my frustrations at my physical state (slowness due to hands, upset stomach, the fact that I can’t go downstairs by myself anymore or get myself outside either) causes me to want to voice my opinions strongly about the unfairness of life; (I do that anyway when it concerns health insurance woes.) This way of thinking endangers me in selfishness…that things should be as I want them to be.

And so I think of doors in an analogy of my life. Not all closed doors are meant to frustrate; not all open doors are meant for me to walk through; some doors will have misleading signs; some doors will not open on their own, but will take physical effort on my part. Discerning the right door to enter is dependent on the door to my heart–“Guard your heart above all else, for it determines the course of your life.” ~Proverbs 4:23, NLT

Doors of Greece. Pictures taken by Mel 🙂 (Greece trip, May 2010)

Myceneans Mycenaean tomb

Athens Athens

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Philippi Greece0002 Ruins of the church building, Phillipi

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Under the Heavens

Yesterday at breakfast, Megan and I started discussing some of the different college courses we had taken during our years of studies. Old college days have been in thought since this weekend marked Marcia’s college graduation. Our “baby sister” now a college graduate! 🙂

In the course of our breakfast chat, Megan and I discussed our science classes. I had taken Environmental Science (being a Business major, this was the easiest to comprehend–bonus, the shortest labs!) and Megan had taken a course from her college that was equivalent in study to my Environmental class. We both concluded that the study of rocks was not our keen interest. We ventured to other areas of nature…the oceans and heavens, and it made me think back to the last summer I lived at home (San Luis Valley), before permanently moving to Denver that Fall to finish school and work.

IMG_4951 Cosmos.

To cap off my Gen-Eds, I took several online courses from Red Rocks Community College. Besides my Humanities curriculum and online discussions, my next favorite that summer was Astronomy. Being in the science department, this also meant labs. But I didn’t mind the labs. From my parents backyard, on clear evenings with little or no moon, the heavens sparkled!! I could spend hours gazing at the stars, trying to find constellations in my Dad’s telescope or drawing the phases of the moon. One couldn’t do that living in Denver.

Growing up, we sisters would take blankets out on clear summer evenings and lay out on the grass. We would talk about life–funny stories, the little insignificantly seeming things that back then got on our nerves, fears or dreams–and stare up at the sky. I remember feeling so small…one can’t even see the whole expanse of the sky without turning your head. I know the ocean is deep, unmeasurable, but the heavens are unfathomable.

il_570xN.592181820_c2f2 Northern Lights Show.

Once in junior high, I was getting ready for bed. On summer evenings, it was typical of us to leave our windows open as to get a cool breeze and hear the outside voices of nature (my poeticness version of saying, “Hear the cows chewing the grassy fields and mooing distress-fully.”) I was closing the curtains half-way when I noticed the sky was glowing red. My first thought, “Jesus is returning!” and went into an excited panic moment. Then realized it was not, but couldn’t put my finger on what I was seeing. Still in an excited panic state, I ran downstairs (yes, I literally used to run down the stairs), and yelled, “The sky is red!!” My Chicken Little moment. Dad looked out the study-room window, but the corner of the roof blocked his view of the red, making my Chicken Little situation all the more realistic. But I persisted that he go outside. When we did, the sky was aglow! Northern Lights…right out my bedroom window. Unfathomable.

He who made the Pleiades and Orion,
    and turns deep darkness into the morning
    and darkens the day into night,
who calls for the waters of the sea
    and pours them out on the surface of the earth,
the Lord is his name.

Amos 5:8, ESV

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Today, May is here

Today I got to paint.

Today my sister, Megan, and Mom joined me. 🙂

Today, my “painting studio corner” in an unfinished section of the basement, became artistic.

If you hear a voice within you say ‘you cannot paint,’
then by all means paint,
and that voice will be silenced.
– Vincent Van Gogh

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More to come…

https://www.etsy.com/shop/BrushstrokesbyMel

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