Tag Archives: changes in life

Homemade OT

“Do you want to go out on the patio to sit?” We had just finished dinner and Dad was up from the table already starting to clear the dishes to the sink. It was a particularly toasty day, so I had only ventured outdoors when Mom drove me to my short doctor appointment in town. But around supper, the temperatures dropped slightly making the air pleasantly calm and a soft warmth.

“I’m not sure what I am going to do,” I reply to Mom’s question. Before dinner I had finished a book–downloaded on my Nook–that a friend recommended to me. I was all caught upon emails, not planning on starting any paintings, had a clean room and just did laundry a few days prior, and didn’t feel like resuming finger-poke blog entries just yet. In a word, I was a bit bored. I could have called someone on my Captel phone for a conversation, but decided fresh air was needed.

I was taking the last of my medicines in the kitchen and thought of what to do while outside. Mom was going to be planting the yellow Columbines she recently bought from Lowes and Dad was working on (what looked like to me) weeding and installing the new garden hose. Never being one with a “green thumb” and now too adding my limitations of walking, bending over due to balance and my hands–I am pretty much no use in the garden. (Although I do play a role sometimes of watering the flowers and small bushes near the house with the hose.)

I decided I could sit at the picnic table and continue where I had left off earlier in the morning, reading and recording the verses where the phrase, “steadfast love,” appears. I had started this quest last Fall, but stopped after finishing Psalm 119. The notebook of references fell to the bottom of my upper right dresser “junk drawer” and it wasn’t until yesterday that I found it.

Lost in thought about the Psalms, Mom comes back to the kitchen and starts talking to me about using rice as an Occupational therapy exercise. Taking into consideration how the numbness in my hands affect my feeling, holding or picking up objects (I demonstrated with my medicines,) Mom continues to explain this simple exercise in an excited fashion. Totally missing a few context pieces to the conversation puzzle, I just understand that if you put rice in a bowl with objects, such as beads or coins, use your hands to feel around for the objects (because you can’t peek in the bowl for them), then it helps–not only your hands and finger touch awareness–but strengthens the mind. It’s like a psychology OT exercise! Stimulating!!

Instead of sitting around the picnic table, Dad suggests sitting under the tree nearer to where they are working. It was lovely! As I am getting ready to pull out my Bible, Mom asks if I wanted to try the rice bowl activity. “Sure,” I say. Mom goes in and gets a bowl of rice and places in “hidden objects” for me to find with my hands. The objects slowly discovered: nice sized wooden beads and pennies. “How many pennies are there?” Mom turns her head so I can lip-read, “Twenty.” Twenty? I found two. ūüôā

It amazed me how just weaving my hand in a bowl of rice “looking” with my fingers for objects, felt like an exercise. My hand was physically tired; I rotated between left and right. My physical therapist had commented on how much atrophy she saw in my hands, then showed me a strengthening exercise to help with the curling fingers. But it persists. The hardest part of nerve loss is that it can never be regained, though I can keep it for as long as possible if I retrain my brain using the muscle exercises. It might not amount too much, but it is better than being idle.

The book that I had finished before dinner is an autobiography titled, Life, In Spite of Me: Extraordinary Hope After a Fatal Choice,¬†by Kristen Anderson. At age 17, Kristen had lost all hope to live and attempted suicide by laying on a train track one block from her home. But she did not die. God, in miraculous ways…unfathomable ways…spared her life–a second chance. Through the long, hard recovery, Kristen came to know the healing power of God’s forgiveness, mercy and grace. Although she didn’t understand God’s timing, she started to share her story. She had questioned what life would hold with no legs…her future…but the more she shared, the more outflow of how her testimony helped others who were hurting came to light. Feeling God’s call, Kristen started in full-time ministry and founded Reaching You Ministries.

There are moments in my life where I question my abilities, strengths and future. It is not an easy road…and unlike Kristen, my body will never recover here on earth. But the encouragement and hope I found in Kristen’s testimony gave me the reassuring peace that my abilities, strength and future are not like the shifting sands…but solid, unshaken…held in God’s hands.

My hope is built on nothing less
Than Jesus’ blood and righteousness.
I dare not trust the sweetest frame,
But wholly trust in Jesus’ Name.


On Christ the solid Rock I stand,
All other ground is sinking sand;
All other ground isinking\

“The Solid Rock.” Edward Mote. 1836.


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

Central focus.

This weekend was beautiful. As I stepped out on the back patio, I could feel it. It was the start of Fall weather. I know it is not official until next Sunday, but the change seemed to shout out in the morning light, brisk air, and the first of colored tips in the leaves:

“A new season has arrived.”

I sat in a coffee shop last night¬†with¬†a friend.¬†As our conversation¬†flowed, I mentioned that I have been struggling with self-control (more priorities) of how I use my time. From the time I get out of bed, my days are usually pretty routine. Then these last two weeks, I seem to have lost that routineness. I seem to be all over the map of “to-do” lists of little details or projects needing attention, the weekly home visits by OT/PT, calling family on my new Cap Tel as I try to recapture the time of¬†lost conversations, squeezing relaxing time in to read, or responding to emails which can take a bit of time. The end of the day comes and after all the business of accomplished things, I feel like I haven’t even left the dock. My focus¬†meanders…

It is hard to discern what I need to be doing as I feel I fight against time of my declining body.

“I just don’t really know what to write about,” I say to my friend. Not that I am out if words or post¬†ideas,¬†but each day seems to bring about more change that¬†I don’t know where to start. In the same manner,¬†I see a parallel to my time studying the Word and in prayer:¬†Unsure of the direction I am to take, as some doors have opened and others have closed.

I wrote last week about leaving room for “God Room.” It cannot hold¬†nervousness leading to worry and doubt, but I let mine sneak in through the crack beneath the door. It distracts my focus, my desire of complete surrender…and I need to refocus on the promises that God is with me in every season: especially the ones that bring about change.

As Fall approaches, I anticipate its beauty. Shouldn’t I anticipate the same beauty within my own season of change?

God has made everything beautiful for its own time. He has planted eternity in the human heart, but even so, people cannot see the whole scope of God’s work from beginning to end.

Ecclesiastes 3;11, NLT


Filed under Adjusting to NF2, Uncategorized

It’s like lab work…Part I

If you have ever had important medicines where labs are required before you can proceed with anything medical then this post would be like the lab work. Maybe I spent too many hours in doctor appointments yesterday or maybe it is because I have somewhat neglected to keep you all informed of current physical conditions, but to understand yesterday and the current future course of actions then you need to understand the lab work of what has brought me to this point.

So here it is: Part I

I wrote at the beginning of the month about my May MRI/hearing test results, a list of things physically changing in my body and the fact that I had an option for¬†a chemo treatment. Over the course of the month, here is an inside scoop of a few important decisions and observations that lead up to yesterday’s appointments.

First, it was no easy decision about the chemo treatments. Yes, I had an absolute peace that doctor’s appointment, but when¬†I returned home, I was forced to face reality and the fear of the reality that my body is indeed winding down faster than my hopes, I lost sight of the peace that God was in complete control. I felt like this heavy cloud was over me..like the fear that I would make a wrong decision. I was just confused even though I was seeking God with my whole heart.

Do what the Lord bids you, where he bids you, as he bids you, as long as he bids you, and do it at once. ‚ÄĒC.H.¬†Spurgeon

Between different songs coming to mind (Michael W. Smith’s “Someday” (Set the Children Free), passages of Scripture (Psalm 90, emphasis verse 12), talking with my parents and the C.H. Spurgeon’s quote,¬†I¬†came to the¬†decision that I would¬†start the chemo treatments.¬†Not implying that¬†God has given me this time to “be sick,” but¬†that I have the time right now to try. I knew deep¬†inside that if I got to the next MRI without at least trying, then I would hold guilt on myself (even though I shouldn’t). I also had to come to realize that this is still something that is purely trial run. The hope is that it stops tumor growth, but it could not work any at all too. Neither myself or my doctors have any control of that.

My decision made, I emailed my doctors and we started communicating about different things. I also told them that I would not want to start anything until after my parents returned from their trip to Colorado. That leads us to this week.

Like any other appointment, I have to evaluate myself and¬†make a¬†list of¬†any new¬†physical changes¬†noticed or questions I¬†may¬†have.¬†Even though I was just at Children’s three weeks ago, I had a list¬†of new¬†physical¬†changes which is¬†a¬†bit saddening, because it means that the something is still going on inside my brain area. Because I won’t have an MRI for another 2 months, I can’t assume tumors are growing but they are obviously putting pressure or something as my body is showing change, especially on the right side.

Changes I have noticed have been complete numbness in my right hand and up my arm. (I will blog more on my right arm later). There has also been an increase of pressure in my neck, so I feel my posture has decreased again even with keeping up with my PT exercises. I also have had an increase of pressure in the lower spine. I can feel it as well as I notice it in the way that I stand and the added pressure on my intestines.¬†My balance seems¬†about the same in¬†normal walking situations but may have a¬†bit more troubles as¬†the most frustrating recent change being losing hearing in my right ear. Usually¬†a few small decibel is not that noticeable, but I just got my hearing aid adjusted two weeks ago and already noticed that I was having a hard time hearing. And even if I did not notice, others had because the first thing a few friends and my doctor pointed out was my voice being strained (I do this when I can’t “hear” myself speak.)

As all this came together, I took my list and my questions to my doctor appointment yesterday. My lab work on my behalf was complete, but I was in for more when I got there…

Continues in Part II.


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

Now what?

I have to be honest.¬†I have been procrastinating writing¬†this particular post since Friday. Oh, I tried. And it resulted in tears of frustration. Last week was rough. It was not a good week. I kept finding more things during the day that I could hardly do–the last being I could no longer clip my left fingernails. And¬†I use huge clippers! By Friday night, I just broke down physically and emotionally. I looked in the mirror and could not see anything positive.

Since the decrease of¬†my steroids¬†and now¬†back to¬†them¬†consistent, I have been doing¬†stable. I have full energy back most of the time (at least¬†I feel more energetic) and most of the weight I felt on my upper back is lifted. But I feel it affected my hands on a more permanent level: more weakness and numbness–especially in the right hand as my ring finger is now very heavy from the numbness. I also find I have¬†more curl in the left ring finger… when carrying things I don’t even use that finger. I am having a harder time opening things (especially in the kitchen), putting on makeup, putting in my earrings, unbuttoning my pants in a hurry, putting on thick socks, and typing. In a word: slow. I am getting slow.

I am thankful though that my back is not as heavy as two weeks ago. I have only had a few times of the extreme neck pain. At Thursday’s appointments, I saw some doctors from the Pain Management team. They prescribed these special patches that you place on your area of pain and it helps decrease the pain by numbing it.¬†I have not had to use them yet, but thankful for this because it gives me more freedom to still continue things I would have been doing otherwise. When¬†I use the rice pack, I¬†have¬†to hold¬†on to it or balance it¬†and that gets difficult. They also recommended I get a Physical Therapy evaluation and start PT. It was actually one of my questions as I have been trying to work on my posture–which helps balance, strengthen the back muscles, stimulate bowel movement and just help me in the long-term.

Otherwise, my main doctor and¬†I discussed the steroid pills in terms of steadily staying on them for the time being. I have decided against the other two chemo treatments at this time, but really glad that we discussed things…because it gives me a better understanding for if and when the time comes to reconsider the options. I got all my questions answered. ūüôā

Right now¬†I am frustrated and sad.¬†I got my left hearing aid fixed and my ear cleaned yesterday and I still cannot hear; Which means I am going to get a hearing test very soon! (Monday to be exact).¬†But it is hard. I now realize how much I depended on my left ear. I cried last night¬†when¬†my dad had to write down what he was saying so I could¬†understand. I think it is time for¬†me to take another lip-reading class and touch up on my sign language…although due to the hands, I focus more on lip-reading anyway.

Remember my very first post of the New Year? (You can read it here). I talked about seeing the birds in the winter…their safe haven being the butterfly bush outside my window. Here almost two months has gone into the year and how easily¬†I¬†have forgotten that¬†God feeds these birds and knows their¬†needs (Matthew 6:25-27). In my own life, I have felt like these birds–in the cold of winter, finding a safe haven among the little branches of the bush even though the wind and snow still are all around. Almost as if when I say, “Will winter never end?” But really mean it more towards all the current health problems…finding new daily obstacles is like waking up to realize you have to scrap off your icy windshield again.

Today my cat¬†led my attention to a¬†male¬†cardinal¬†outside on¬†the branches of the bush. When Muffy’s ears perked up, I looked and there¬†it was: brilliant red. ūüôā Of course all¬†around¬†outside was snow, but there¬†it¬†was…in the gusty, snowy wind minding¬†its own business. As the wind started to blow, the cardinal’s actions¬†resembled how I feel at the present moment: clinging for dear life. I watched for a while and asked myself, “And what am¬†I clinging to?” The hopes that my body¬†will go back to the way¬†it was before?¬†Quite possibly.¬†Like I said…this weekend, I just dismissed everything. I did not really even talk to God, because I did not know what to say and I was trying¬†not to be angry about all these new changes. I get tired of change.

I don’t want to be stuck in the ruts of winter months forever, so I do need a change. I need to change back to seeing hope in all circumstances. It has already started. I have been going around and making notes of things that are difficult and possible alternatives. My family has been there with suggestions and support. And I know that God does see my life living with potential. I just finally have to cling to that promise with my whole heart.

‘Let not your heart be troubled,’ His tender word I hear,
And resting on His goodness, I lose my doubts and fears;
Though by the path He leadeth, but one step I may see;
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me.

Song: “His Eye is on the Sparrow.” To read more about the story of this hymn, click here.


Filed under Adjusting to NF2, Hospital Trips, Muffy