Tag Archives: unknown future

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

In all things…

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

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

Grumpy Cat kulfoto.com

Yep. This is just about it.

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

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

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

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

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

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

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

Colossians 1:11-14


Filed under Adjusting to NF2

My Father’s House

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

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

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

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

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

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

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

John 14:1-4 (The Voice)


Filed under Adjusting to NF2, Family Times, Uncategorized

List of my insufficiencies

Kermit. Miss Piggy. Animal. Rowlf the Dog. Beaker. Fozzy Bear. The Electric Mayhem.  Statler and Waldorf. Rizzo the Rat. The Swedish Chef. (Just to name a few.) If you have ever seen any of the Muppet movies or The Muppet Show episodes, I am sure you can envision the characters, the voices, the humor. And sometimes God uses the strangest Muppet analogies to give me humor in spite of my insufficiencies.

This past weekend,¬†I started my notes of things that need to be discussed with the doctors tomorrow. I see a team of different specialists: my main doctor for the MRI results and treatment plan;¬†a pain team management doctor for the tumors in my hands and the pain in my neck/upper back; a follow-up with my doctor for the blood clot and a few others. It is a long day–early to late in the afternoon with all the evaluations¬†being meticulous,¬†but repetitive. There are the talks of future possibilities, different treatment options available, different steps or things to watch. My brain about half through goes into standby. So I started bringing a list. I¬†do better with lists. I am a note-taker person. It helps me focus and understand or stay awake. ūüôā

So this list is¬†all the¬†changes that have occurred in my physical body since my February visit. After my scribbles of a list¬†was finished,¬†I¬†put my pen down and cracked my knuckles. (I know you are not supposed to do this,¬†but it feels good and I figure my fingers are already worse off anyway.) I look at my hands and start to laugh. Out of¬†nowhere I remember my¬†MRI experience from last Thursday. That day, I thought I would take a nap during the scan, but the technician asked if I wanted a movie. I looked at the list anyway and figured I would just watch something fun and that I have seen before so if I fell asleep then it was no big deal. I skim the options fast and choose what I see as “Muppets.” Now assuming this was The Muppet Movie, I get cozy with my arms strapped in and headgear set in place. The movie starts and this is no Muppet beginning…it is Muppets from Space and I think, “Oh boy. I haven’t seen this in forever!” The first fifteen or so minutes, I was breathing so hard through my nose, because it was the only way I could keep from laughing!

I did end up falling asleep during the movie, but I don’t think I would have ever thought of this on my own if I had not watched that particular movie, because unlike the other movies where Kermit and Miss Piggy are the lead characters, this time it was Gonzo and Rizzo the Rat. Gonzo. Classic character. Classic nose.

gonzo http://www.imdb.com/media/rm2902164736/tt0158811

See that nose? If you are wondering how my left ring finger now looks as it continues to curl in–think Gonzo’s nose. It matches. Find the humor in the analogy and laugh. It’s ok, because I already did.

In making my list for the doctors, I found the “head and shoulders, knees and toes” song was the best way to organize my list so I started with my hearing; then my neck and upper back–more pressure and getting hard again to stand up straight or hold up my chin; my arm and hands–besides the “Gonzo nose” finger,¬†my left¬†middle finger has significantly started to curl as well. Whereas my right hand just went completely numb to my elbow making things like holding pens, buttoning my pants, putting in bobby pins, holding¬†cups or texting,¬†holding my toothbrush, tying my shoes, pouring coffee from the pot and typing¬†more of¬†a daunting task than they should be. My bowels still deal with constipation; and my legs/feet are weak. I can hardly get up off the floor or when I bend over to pet Muffy, if I am not holding on to something then I easily loose my balance and occasionally just fall over.¬†Strange though, I have not had any pain spasms–Charlie Horse cramps in the legs–but no pain spasms!

I usually look at my list and I see my life becoming less independent. And if there is one thing¬†in life that would be the hardest to surrender, it¬†is my independence. It was the reason last year that I struggled so hard with moving back home.¬†But where I could¬†only focus on the losing part, God had bigger plans and¬†he has been¬†helping me to see that I can still live fully on my own. I just have a few speed bumps that take a bit slower t0 get over. Yes, there are days when I am completely frustrated at my hands or cry and say, “A 25 year old should not have this problem!” (like not being able to button my pants.) But to see past my insufficiencies helps me to see how blessed I truly am, because I¬†have resources available to help and when the resources can’t, my family can.

Over the past few months, things of this have been changing: I got my own plates, bowls and cups that I can hold better; I have my special silverware and we just ordered more because I constantly use my fork and spoon now as it is. (See utensils here.) We also just ordered a button hook so I can button my pants; coiler elastic shoelaces so I don’t have to worry about tying my shoes or bending over when they come untied; and¬†I bought hairbands so I don’t always have to use bobby pins. If I go clothes shopping, I have to be able to put the outfit on myself or I don’t buy it; I went back to wearing dangling earrings, because most often they don’t need backs so I don’t have to worry about trying to hold the tiny piece of metal;¬†I gave away all but a few cd’s as I came to a peace about losing my hearing; and have been getting really good at finger poking at the keyboard when my hands otherwise are too tired or cramped to type in a normal fashion.

I don’t know what kind of results tomorrow will show or what I will be doing in this next month or the rest 0f the year, but as I gather my list of insufficiencies, I remember that when I can’t…He can.

I think I can’t, I think I can’t
But I think You can, I think You can
I think I can’t, I think I can’t
But I think You can, I think You can
Gather my insufficiencies and
place them in Your hands, place them in Your hands, place them in Your hands

~Relient K, “For the Moments I Feel Faint”

Other resources:




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

Sweet Aroma.

If you happen to see me¬†as of late, you might¬†often times catch me¬†with my nose¬†in the air. Don’t think much of it…I am¬†just trying to smell the air, because it¬†carries a¬†sweet aroma. Actually,¬†I don’t even think it is the air. I think it is¬†just my nose or senses.¬†No one else can smell it. I can’t even tell you where it came from.¬†If you are thinking this is insane–it probably¬†is. Even my doctor had never heard of¬†anything like this before. I am thinking it is from one of my medicines. I would have guessed¬†Lovenox, because the scent started¬†decreasing last week once I stopped the blood thinner shots. I was a¬†bit sad, and aghast when I actually smelled something quite unpleasant. I am just one of those¬†rare few that get side¬†effects¬†concerning the sense of smell. It certainly is not the first time that it has happened when taking treatments.

Like I¬†said,¬†I can’t remember smelling the aroma before the blood clot…but¬†I sometimes¬†wonder if I did but did not recognize¬†it.¬†I am a bit slow to piecing these things together.¬†Right before¬†my¬†last doctors appointment,¬†I finally came to my senses [LOL, classic Mel punch line right there–get it??] and realized that I am smelling this sweet aroma everywhere I go. I really can’t describe the smell. It is not vanilla per say, but almost like a fresh rose smell. I have no sense of¬†smell. Literally, so I can’t even remember the last time I smelled a rose…so I am just thinking in my mind that the smell of a rose is the best possible answer. ūüôā I know it is not lavender! Maybe that is because I have never liked the smell–in essence, maybe¬†I am making my smell based off personal bias of favorite flower smells. Isn’t this great? It is like¬†a psychology class. ūüôā Regardless, my sweet aroma is like having a Glad plug-in affixed to my nostrils at all times. ūüėÄ Coming from two and a half¬†years of not smelling¬†to having this aroma in my nose has been quite pleasant!

Last week, I did notice the aroma fade. I thought it ended.¬†I would get wisps of it here and there…that is when I would stick my nose in the air and just smell–grasping as much of it as¬†I could get before it was gone. Mom caught me in the kitchen; it happened at a red light coming home from errands (I am sure it looked most ridiculous…oh well); and it happened Saturday night after my sister and I finished a movie in the basement. Now that it has returned I don’t have to smell the air as often…because I smell it when I breathe. It is almost as if it is inside me.

The¬†sweet aroma was not the only thing to fade last week: my left¬†hearing aid is currently not¬†working, thus, my hearing seemed to “fade” as¬†I depended (or depend)¬†on lip-reading and my right¬†hearing aid only until Thursday’s appointment. My bruises are fading–my stomach is almost back to its normal color in most areas; and as I decreased my dose of steroids, what I got in return was a reverse of side effects of swelling, numbness, and extreme pain in the neck and upper back. As the medicines faded–the side effects worsened so bad that on several times I could not even lift my head. I was¬†a hunchback. Not even my pain medicine helped very much on Saturday afternoon; so I warmed my rice pack, placed it on my neck and crawled into bed for a nap. That seemed to help!

I am now on the plan of getting back on the steroid pills at the moment. It will take time to get to where I was before, but regaining stability to where I can function is the key. It is the thesis of my doctor appointments on Thursday–to formulate a plan:¬†keeping me functioning and independent as long as possible while decreasing the pain without using a lot of heavy pain medicines. Talking with my parents last night made me realize how much I don’t know. I have questions that seem to have no answer.

I also realized last night that I have been having inner denial. I know my body is slowing down, changing, fading…but I just chose the road to dismiss it. Doctor appointments seem like a blur of massive information; I usually get home and totally dismiss everything. I let myself try to forget that I have struggles, pain. I ignore it by pushing myself harder against it. My own act of inner denial of thinking, “I won’t get to that point of extremity health problems.” Sometimes I don’t think that is bad…it gives me the motivation to carry on and conquer.¬†But I¬†also¬†can’t live a life ignoring¬†it either. My dad reminded me last night that things will continue to change. I have so much pressure right now from tumors along the spine in and out that any slight change is going to effect my body.

There will be no timeline of events. No way to prepare or know when the next changes will be.¬†The thing is–everything will fade in time.

For now we see in a mirror dimly, but then face to face. Now I know in part; then I shall know fully, even as I have been fully known. (1 Corinthians 13:12)

– – –

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal. (2 Corinthians 4:16-18)

These promises will not fade over time. God holds my future. Amidst life’s pain and suffering, those words speak a sweet aroma to the soul:.¬†“But thanks be to God, who in Christ always leads us in triumphal procession, and through us spreads the fragrance of the knowledge of him everywhere. For we are the aroma of Christ to God…” (2 Corinthians 2:14-15a).


*A song that has been on my mind since last week:

Shaun Groves. “After the Music Fades.” Invitation to Eavesdrop. Provident Records, 2004.



Filed under Adjusting to NF2, Random, Uncategorized