Tag Archives: rainy days

The Next Chapter

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

Even in the grey.

In the very place where God has put us, whatever its limitations, whatever kind of work it may be, we may indeed serve the Lord Christ.

~Elizabeth Elliot

This morning was lovely; 6:45 am and I am wide awake. (Ok, the Charlie horse cramp in my right leg is not the greatest alarm clock, but it got me out of bed.) I go to the kitchen to make a cup of coffee and notice how bright it is outside. No sun…in fact it was raining. The colors were vibrant. The grass, trees and shrubs look greener; the blossoms a deeper shade of pink; the tree swallows more royal blue as they flew in big sweeping motions around the deck and the robins a deeper chestnut as they hopped in the grass feeding on bugs. The only thing that looked the same to me was Muffy–but we’ll give him some slack. 🙂

As I feed Muffy his breakfast, I breathed in. Refreshing. The grey skies reminded me of limitations, as even my own physical disabilities were on my mind the night before. It is easy to see the color grey and connote it with seeming dreary, as if it is not possible to think that a day without blue skies and sunshine can be beautiful. But it was. In fact, I don’t think any amount of sunshine or clear skies could have replaced the atmosphere that lingered today. Life can seem grey. I question what I am doing or will do in the future; I question about health or finances, about where to serve or what book to read next. It does not have to be this way; I was not created to live this way. I live in beauty, because in the days of grey, I have been given hope and a purpose. (Jeremiah 29:11-13)


Filed under Adjusting to NF2, Muffy, Uncategorized

A new day!

I am not usually up this early. Not a “get up before the sun” sort of person, but today was different. I opened my curtains to a dark sea-blue sky. No clouds to distract the beauty. I sit on the end of my bed and start my physical therapy exercise routine. I started my sessions last week.

The goals set from a PT view is to strengthen my inner core muscles, while releasing some of the pressure in my back (upper, lower) and neck. I also added my own goal of working on my posture, as my shoulders bend in and I stick my neck out.

When I try to explain my stretches and goals, I always feel like an oxymoron: strengthening the muscles, yet relieving the pressure at the same time. How is that possible? They are such simple step exercises too. Repetition. And I think, “Why couldn’t I have thought of that on my own?”

As I finish my morning session, I begin to think about the day. How fresh it seems, and even though there are gray clouds in the sky, it is getting lighter outside. I think of Lamenations 3:22-24, “The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness. ‘The Lord is my portion,’ says my soul, ‘therefore I will hope in him.'”

I thought about yesterday…how dreary, dark, cold, rainy, Monday of a day it was. My physical body was feeling the weather…it affects my hands like someone who suffers from arthritis. I had a constant pain spasm in my big toe on my right foot and I could not seem to lift my shoulders in a good posture position. It is like carrying an invisible weight. I thought of how most mornings I get up and forget to thank God for another day. Another chance just to get myself out of bed on my own, even if my body feels otherwise.

Today I have no pain yet. I can’t guarantee this day will be without it, but it is a new day. The gray clouds are now overrun by the returning beauty of yellow hues and faded blue sky. The sun finally showed its face. It is as if the morning beckons, “Arise, shine, for your light has come, and the glory of the Lord has risen upon you.” Isaiah 60:1


Filed under Adjusting to NF2

Walking with my Raincoat.

I’m looking for a friend to hold the door

It’s cold outside when I don’t know where to find

A sheltered place secluded from the race

Of this old life

It is rainy here. Gray, misty, windy. Reminds me of this past month. Seems every turn had bad weather.

As I walked out in the downpour with no raincoat

I was soaked down to the bone from head to toe

Without my raincoat, anywhere I may go

I still get wet somehow

And yet right now as I sit and glance out the window…blueish clouds set in a faded yellow sky. I can’t help but smile.

I found a friend. He’s with me to the end.

He promised me that He would not forsake His own

And when a promise never ends

It can only mean one thing…it’s from above

The sky is now pale pink. The reminisce of hope in the storms.

Now I walk out in the downpour with my raincoat

After all is said and done, He’s still the One

With my raincoat, anywhere I may go

I know I’m alright

Reference: “Raincoat.” Downhere. Word Entertainment, 2001.



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Filed under Adjusting to NF2, Family Times

A Monday in Disguise

The past few days I have been a walking contradiction. I have had P.O.D.’s song, “Alive” on my mind all weekend, but I have been anything but that. Combination of lack of enthusiasm plus lots of work hours, I spent most of my spare time taking naps or simply putting off what I need to do. At the time, I just did not want to do it..mostly writing emails and letters. I even found myself thinking yesterday, “I am tired of writing.” (GASP!) I know. But it was an honest thought. Then, I get two letters in the mail. One from a friend back home in CO and another from one of my Grandma’s. Cherished letters. Handwritten just for me. That changed everything.

So today as I hummed, “Alive,” I thought to myself: “Today has been a good day!” I had fatigue at work, but a cup of tea and relaxing for a half hour on the couch when I got home solved that problem. My back has been giving me a lot of pain, so I took breaks every hour to lay on the floor. Always worth it, especially since Terminex was here this morning…no more surprise spiders leaping out from under the couches while I try to stretch.

Today was raining, but I loved it. We need the moisture and I needed the excuse to stay inside. Plus I themed it while I worked on sorting pictures by watching Singing in the Rain. Not much beats that. I finished sorting by year all of my college pictures and uploaded ones that I need to copy off onto Shutterfly. I felt like a champion, even though the piles and piles of all my other pictures are still in unorganized heaps.

Yep, today was a Monday in disguise…no doubt about it.

How was your Monday?


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Filed under Books and Movies, Paintings, Uncategorized