Tag Archives: Occupational therapy

Clumsy Me

Considering how clumsy my hands have been lately, yesterday morning I thought I was functioning pretty normal: no spilled coffee or dropped medicines, no broken dishes while unloading the dishwasher, efficient in time getting ready and typing (finger poke) a few quick emails. By noon, I was on my way down to the basement to start the top portion of a large painting.

I was having no problems getting my paint tubes from their assorted-by-color plastic containers on the floor and only had one jammed lid due to dry paint. The sole reason I forgo getting beauty nails at a salon is that I manage to paint my own nails (and hands for that matter) in a very festive way. I also chip my nails in a very festive way…and as such was my painting morning.

Somewhere along the way in the afternoon, the tides changed and my hands resumed their clumsy status. Of course the cold fingers could also be associated with part of the problem. I am very thankful that I have not done damage to assets like my laptop as I carry it from my room to the kitchen. I drop my cell phone repeatedly, but it has a protective cover–that is now cracked (time for a new one!)

Yesterday before dinner, I asked Mom to carry my laptop for me back to my room–a brilliant request as I was losing my grip on many other things during the evening…in particular, circular objects like my biscuit full of apricot jam and cylinder shaped objects like my Hazelnut creamer as I was pulling it from the refrigerator shelf. It fell to the floor, lid cracked, and about what I would blend in three cups of coffee spilled on the floor. It was the grand finale to my day.

I’ve written blog posts before about my hand history: how the muscle atrophy started, Occupational Therapy sessions, finger splints and other devices to help my function as my hands weaken, and my left ring finger resembling the appearance of a “Gonzo nose.” And although my MRI results since November have reported back as a stable status, there is a continuing message coming from some tumor (unknown) to the brain that blocks the message to the muscles in my hands–specifically fingers and thumbs. Hence, since November, I have experienced a loss of hand function…which means more weakness, more numbness and 7 more fingers that now too are starting to resemble a “Gonzo nose.”

In moments of clumsyness (or flat-out frustration, embarrassment), I sometimes have a moment of humor–where I can smile contrast to grunts or tears. Enter: Yzma.

EP8aT0z http://i.imgur.com/EP8aT0z.png

In Disney’s Emperor’s New Groove, Yzma goes from being Emperor Kuzco’s long-time guardian and advisor to being fired after she plays “Empress” in his absence. In a fury, she devises a plan to rid the empire of Kuzco and reign in his place. All goes well and according to plan until her handyman, Kronk, burns his spinach puffs at a dinner they prepared for the Emperor. Kronk dashes to the kitchen leaving behind the freshly filled cups on the platter, in which one is intended for Emperor Kuzco with poison. Upon returning, Kronk realizes his mistake, takes the platter to the side, blends all the liquids together returning a portion into each cup, and then gestures to Yzma not to drink hers. She quickly throws hers in the plant beside her, turning it too into a llama (but looks more like a horse.)

At the end of the movie, Emperor Kuzco has had an adventure that leaves him with a changed heart and a new friend, Pacha. As these two enter Yzma’s secret lab to retrieve the bottle that would turn Kuzco back into human form, Yzma and Kronk are already there. As Pacha tries to quickly grab the potion, Yzma knocks the shelf so all the bottles land on the floor. “Oops! Clumsy me,” is what she says. 🙂

My hands–as they continue in this weakening and clumsy state–are another part of my journey. I cannot lie that I have had many thoughts about what life will be like in the event I lose complete hand function. “What am I going to do when I can’t use these?” I cried a few months ago in the kitchen holding up my hands for Mom to see. Mom didn’t have any answers; I didn’t expect her to either. I know God holds the answers…to my prayers in all the uncertainties and fears, hopes and dreams. Unlike Yzma, I will never hear Him say, “Oops! Clumsy me.” Because He has promised me forever in the palms of His hands.


Filed under Adjusting to NF2, Books and Movies, Paintings

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

Appreciate the Hands Day

There seems to be a “day” for everything. My favorite part of the lounge at work was the huge calendar posted on the wall with different events for the week or special days, such as “National Marshmallow Day”; “Chips and Salsa Day”; “National Crossword Puzzle Day”; “National Peanut Day”…I mean literally–the list is endless! The only one that I have never been a fan of is “National Talk like a Pirate Day.” Our brother dorm during my freshman year of college literally took the day into full effect, some with costumes even. It was fun but after a few “Argggg Matey !” I had heard enough. But they did it ALL day–gruffy accented pirate talk–I just found it annoying. 🙂

There are days of fun, days of remembrance, days of randomness, days of awareness. Even this past Sunday was National Coffee Day, in which I took the liberty of enjoying a second mug of our freshly brewed Seattle’s Best. This post has been long time in the making…in other words, I have wanted to do this post for a long time but I believe that the timing was delayed….because God was bringing me to this point where I would learn from this post experience…where my physical body would be at a place to where I fully understand the significance of being thankful. It is the season of the soul.

Therefore, I now take a new liberty and declare today as my own, “Appreciate the Hands Day.” (In part celebration of the last OT session this morning, in which we finalized my list of things needed to order on my own and also received a few new helpful tools for my finger function).

Take these hands and lift them up
For I have not the strength to praise You near enough
See I have nothing, I have nothing without You

Bebo Norman. “Nothing Without You.” Try. 

Around my birthday, my grandpa sent me a card with a beautiful picture on the front. It was one of those reprint cards where it was an artist’s painting…in this case a watercolor. Curious of the painter–figuring it was someone famous like Monet–I flipped it over and the first thing I notice is how sloppy the artist’s signature looked. My mind is not fast to pick up on these things, but it took me a few minutes to make the connection (and also reading the description of the author) that this particular watercolor was not an ordinary watercolor. It was designed by this artist who painted it with his mouth as his hands were idle. My mouth just dropped. I would have never known if it had not been for the signature and description on the back. Come to think of it, up until that point, I don’t think I had ever known about that type of art work…only one exception would be Joni Eareckson Tada.

I googled a bit and found the Mouth and Foot Painting Artists website and soon found myself reading through the list of artist bios and pictures. Just astounding talent and artwork! http://www.mfpausa.com

The thing is at that point in time, my hands–although starting to weaken and numb–were very able to function “normal” (to borrow the term.) The thought came to mind that I should try a painting by using my mouth only, but never put the full effort into the idea as I was painting other canvases, especially for the show. Now that my hands have come to a point in major lack of motor skills and function, the mouth painting idea came back to mind. To fully appreciate  my hands, I wanted to “have none” for a painting. It was an eye-opening experience. (Although I did ‘cheat’ a tad, because I was home alone and had to set up, choose and squirt my paint using my hands, but the painting itself was all by mouth. Even my ‘Mel’ signature. It really gets to your neck after a while!)

I still say “good grief” in frustration tones at certain times during the day when my hands just become frustratable (yeah, I just made up a new word! 🙂 ) But in this season of learning to give thanks for everything–joys or trials–I am now seeing that my feeble hands are still strong enough to help me, so I can’t give up on them just quite yet.


I have set the Lord always before me; because he is at my right hand, I shall not be shaken. Psalm 16:8


Filed under Adjusting to NF2, Paintings

Salad bar and pizza toppings

This month, my big canvas paintings have been hanging in a pizza place, called HaHa Pizza, in Yellow Springs. I have only eaten there a few times, but I have never been disappointed. They offer pizzas of all sorts; you can get your pizza on homemade wheat crust (my favorite) and load up just about any toppings for your slices (I haven’t tried eggplant on mine yet…maybe next time I will be brave.) If you feel like you forgot something, you can just head over to the salad bar and choose from all the fresh and local toppings offered there. I think most people around here agree–the salad bar gets five stars!

Yep, HaHa Pizza adds a few more reasons to my list of why small towns offer greatness: Friendly workers, local art, laid back atmosphere, mustard yellow walls (ok, that sounds weird but it adds character and it is one of my favorite colors). 🙂 At any rate, it has been my first time displaying my art in Yellow Springs, other than the art shows. I am thankful for the opportunity I have had this month at HaHa Pizza. I hope to get the chance to work with them again in the future.




– – –

My Home Care OT reminds me of salad bars and pizza toppings. Life otherwise would be plain cheese or standard greens. I did not want to start OT at first. For my first session, I presented a lengthy list of things I can’t do and things that are almost to that point. My OT set out to work and today we went back over the list…we had solved almost all of the problems by getting the correct accommodations to give me a boost for continuing to live as independent as possible.

I still have a few items that need to be ordered: a new button loop as mine broke; a zipper pull and zipper key loops that would attach to my jackets I use often; more utensils with rubber grip handles; tylastic shoelaces; a fingernail clipper board (it positions and holds your fingernail clippers for you if you cannot); and removable handles for holding glass cups. These are things that I feel I would benefit from as my hands continue to weaken.

During my OT sessions, we talked about many alternative ways to do things. For example, there was a lamp in the living room that I could no longer turn on or off. My OT brought in this remote control switch that is actually for your Christmas tree lights and set it up on the lamp. Now, when I need to turn the light on or off, I just click a switch. Genius! You would assume we would have thought of that on our own. Sometimes a fresh perspective is what is needed.

She also helped me solve my problem of tearing open things (like bags of food), most zip lock bags, and turning book pages: rubber finger tips. 🙂 Next week is my last OT; she is bringing more of these but a larger size so that I can try to wear one on my thumb as well…this may help when I put in my right hearing aid. We also solved my holding a pen problem with new rubber grippers as my pen holder (yes, was lost but found) was giving me more frustration than assistance. My handwriting is still wobbly, but more legible. 🙂 And last, because it is my favorite…a handle for my Tervis, as I use it more often than mugs (morning coffee). The handle allows me to use all my fingers to grab hold, where mugs I can only use two fingers, and it gets interesting (plus a Tervis has a lid reducing spills!)

Funny part is, these things are always at the store…they are nothing special, unlike the specific ones I have to order. But if you are not aware of them or seeking them specifically, they can be overlooked…like so many delicious salad bar or pizza toppings. Home Care OT helped me become aware of this–that living with weakness is livable.

And my God will supply every need of yours according to his riches in glory in Christ Jesus. Philippians 4:19


Filed under Adjusting to NF2, Paintings

High Blood Pressure

I have never struggled with high blood pressure before. In fact, I don’t even understand how it reads. It is like a fraction, but every time is different…I don’t even know what a normal range is supposed to be. The arm gets squeezed: the pressure put on tighter, tighter, tighter…then in a few seconds, everything releases back to normal. The nurse says my number out loud. “Is that good?” It’s all I can ask, utterly clueless. Usually I get a nod of approval, but today I got a shocking remark from my Occupational Therapist, “Wow! Your numbers are high!” After a few more “just in case” squeezes, it was decided that I get rechecked after my test.

This was no ordinary test–it was a driver’s evaluation test. At my last doctors appointment on August 27th, there was concern by one team of doctors about the way I was walking. Due to the concern and just the wholeness of my body, they had me stop driving until I had this driver’s evaluation. I have had one before after my first DVT, but this time I agreed to the test rather than the last time where I felt forced. However, when I got home, my brain starts thinking. Like LeFou tells Gaston in Disney’s Beauty and the Beast, “A dangerous pastime…” to which Gaston replies, “I know.”

I get to thinking how unfair this predicament is…even though I understand the concern presented as there is a concern for other people’s safety in my driving…not just me, I deem it unfair and I let my thoughts turn angry. Yes, I admit it. I was angry. I felt singled out. And after today, I just don’t understand.

Last night I let part of the pressure go. My parents just listened as I cried, talking with my mouth full of food how about it all…the unfairness, the thoughts I still battle in self-esteem, and I even said, “My handwriting is like a five-year old.” (Of course I probably looked like one the way I was eating). I bring up Denver days: “They were my glory days.” Perhaps that has been part of this week’s inner battle–I am trying to relive my past when I felt free.

Maybe that is why I love driving. I am in control. Sweet sixteen and you are on top of the world as you feel ultimate freedom. How is it that driving can have this big of an effect on one’s life? Freedom: To be told otherwise is like being grounded. And that is how I left my driver’s evaluation, except I had done nothing wrong. In fact, I passed everything. There was just concern about the numbness in my hands, but I still do not see why it causes me to have to still not drive until I take an actual test in a car on October 7th.

But life is not about the fullness of understanding–it is about the fullness of faith. It is not about the comfort in freedom or the glory days of the past–it is about enduring in hardships and pressing on towards the goal. Life is not about control–but complete surrender. And I am only beginning to grasp what these mean in my own life..in what I deem unfair, what I cannot control.

And so I pray for sweet surrender, because only then will this body find peace.

When [Jesus] calmed people’s situations, it wasn’t simply an end to their painful circumstances; he didn’t just help them out of their problems. He made them whole again. These people who Jesus impacted experienced a fullness they had never begun to imagine possible. That’s what the peace of Jesus is about–filling up the taker and making them whole.

*Matthew Paul Turner. Beatitude: Relearning Jesus through truth,contradiction, and a folded dollar bill. Grand Rapids, MI: (Revell, 2006. pg. 34)


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

Living in a Fast Paced World

At Tuesday’s doctor appointments, we discussed transferring me to a neuro rehab clinic for my Physical Therapy and Occupational Therapy. This is still in the future plans, but because I currently have a driving restriction until I take a driver’s mobility test (based off the way I am currently walking, just to ensure safety on my reaction times)–it could be up to three weeks until I get the test completed even though I am on the current waiting list. Because of this, I am not able to get myself over to the rehab facilities and since I have already started with Home Health, the plan for now is to let them finish their sessions and then I go on from that point. I have been pleased with my PT sessions so far.

My first session of PT was last week and I start OT next week, which I am anticipating, because today in getting ready my hands lost grip of my makeup bag–momentary sadness to shatter a perfectly good bronzer. Anyway, while last week’s PT session was mostly talk and the “see where you’re at” balance, strength and mobility tests, this week was a full 45 minute workout. I have had PT twice already: one after my first blood clot to strengthen my left leg and the second session this past Spring to strengthen my neck and upper back muscles.

I have never experienced a singe PT session that would literally leave me so exhausted that I had to take a nap in the afternoon. To demonstrate how weak my muscles are–picture me on my knees, lifting the exercise ball over my head (repeat 4 times). By the last, my arms were beat. We also did a lot of balance exercises where I lift one knee while on the other and then rolling the exercise ball back and forth while maintaining balance. To the average person, these may seem so easy, but to a person such as myself, it was difficult. To be honest, today I felt like a toddler…learning to balance and lift things, freely falling over and struggling to get up. But the strength and retraining my mind to use the muscles does not happen over night..it is baby steps. 🙂

Of course, I overdid myself this morning after my session. I went downstairs and painted a canvas that will be on display next week at a pizza parlor in Yellow Springs. (more to come on that!) I finished but had some extra paint and don’t like to waste it, so I set out to finish a small abstract one as well. No joke, the last few seconds of “finishing touches” on the painting and the table topples over!! Thankfully, the painting was not ruined, but for the cleanup process, I was back on my knees like my PT session and struggling to get everything picked up without making a bigger mess. By the end of my painting session, I looked like a painting. 😉

I had been to Michaels a few weeks ago to pick up paints and a pack of 8×10 canvases. At the check out isle there were some extra-large reusable bags and on an impulse decision, I bought one in order to carry my paintings around when they go on display in Beans-n-Cream or anywhere else. Artistically decorated, the front says the classic line, “Stop and smell the roses.” I thought of The Story of Ferdinand by Munro Leaf. Growing up, Ferdinand was different. While his peers were shaping up to be the best for bull fighting, Ferdinand just wants to smell flowers. Only when he sits on a bee does anyone take notice of him. At the bull arena, he is adorned with roses…everyone expects him to put in a good show, and he just wants to smell the flowers. 🙂

Too often I try to rush forward in my physical body, even though it is no longer capable of the word “hurry.” I forget to stop, breath in, smell the roses (sweetness of God’s mercy and grace) and realize that I don’t have to feel pressure to keep up with the fast paced world. God can use me just as I am…like a child.

They say that I can move the mountains
And send them crashing into the sea
They say that I can walk on water
If I would follow and believe
with faith like a child

Jars of Clay. “Like a Child.” Self-titled debut album. 1995.


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

The Basics.

Hey guys.

Thought you might be interested in my new items that will help me maintain my independence as much as possible. 😀 I explained them in my last blog post, but I thought pictures would better show how they work as they are even a bit new for me. Why don’t we start as if I get up in the morning. I brush my teeth and take a shower.

The soap dispensers hold my shampoo and conditioner. I am trying to finish the bottles of my old ones. When they are done, I will just use the dispensers. They give me quantities of shampoo as if you were getting soap at the sink. 🙂 I have to squirt it a few times. And the handle at the right is what helps me get in and out of the shower. It was also what my arm was drapped around when the blood clot hit. Very sturdy!

I also use eye drops to help the dry eyes. I put this on the bottle today and came in the kitchen saying, “With the sound of thunder and speed of lightning- Look! In the sky! It’s a bird, it’s a plane, it’s Super-Tears!!!!” Needless to say, I think even Superman would have approved. 🙂 Because I don’t have the finger muscles to push the bottle, the clippers do it for me:

The rest of these things are random for when I need them. Such as when my back has the tense, sharp pain feeling–I heat up the rice jacket. It is flopsy (word?) but very comforting!

I might also need to cut open things in the kitchen, such as the bag in the cereal box or the covers to my tea. I also like to use paper to make special cards. Using real scissors gets difficult. It is not so much closing the blades part as it is having the thumb strength to reopen them. So, we got these new scissors that bounce back for you. All I need to do is practice, because I can’t cut in a straight line anymore. This might also be from not having the grip in the left hand to hold the paper still, but nonetheless, these scissors are great!

I decided that although I do not need this device right now, it is good to practice on. There might be a day when big pens just might not be what I need when writing. So, we found this neat device that makes your hand sturdy. It is hard, because I have always set my pens against my ring finger, and this device does not. Old habits are so hard to die. I hope to practice with it here and there to get used to it. I want to be able to at least do my signature the same with it. 🙂 That is my goal for now.

I have not had to use this YET, but it will probably be used very frequently: say hello to my new gas tank opener. 😀

This will look so much more appropriate than a pair of pliers. 😀 And lastly, what I love the most–to eat. These new silverware are fantastic! The bigger rubber handle allows me to grip the utensil like before but without hurting my hand. I have also noticed they are not ones for proper etiquette. At dinner tonight, the already used knife resting at the top of my plate kept falling off. Hmmm, I have to practice different ways to place them.

Of course the knife looks good resting on the plate in this picture (below), but that is because it was not loaded with gravy. 😉

We made our order from The Wright Stuff. Here is their website if any of you are interested for more information: www.WrightStuff.biz

What do you think? Any favorites? 🙂 I am adjusting well to these and really, they are for the better. I am not the first, nor the last to use resources like these. I am so thankful they are available for my use and independence. Now, if we can just work on the compression stocking part–I think that would just about cover all my problems. 🙂 Night everyone.

More to come…


Filed under Adjusting to NF2

MRI results.

My apologies for those who have been waiting for the results of last week’s MRI. I had no time to process things as my mind last week was so “go-go-go” for the art festival. I just quickly dismissed everything in my mind that got in the way. This week has been different: lots of rest and lots of thinking. Plus a lot of different emotions–a bit of fear, a bit of frustration, a bit of anger, a bit of laughs, a bit of peace, a bit of hope. For the beginning of this week, it was the negative emotions. I guess I could blame it on lack of sleep, but I think I just finally started to process from last week’s appointments. There is still much to process and pray about, but after many good cries earlier this week…I feel refreshed for the continuing journey. Still doesn’t make the road ahead an easy one, but I know God will help me through it day by day.

So, there is some good news from last week: my blood clot is all gone [except just a little small spot], but I “graduated” from blood thinner pills!!!! Yay! No more finger pokes for blood counts, no more nasty tasting pills! I am still to wear the compression stocking for a while (ok, like a whole one more year!!), but we are looking into ones that are almost accommodated (to borrow the term)–meaning different ones from other companies so that I can start to put it on myself. Eventually leading to the hopes that I can move back into an apartment at some point. 🙂 That is exciting!

Also, praise: the MRI scans for the brain show no growth! My doctor said that surprised him really; He was expecting a few different turnouts. Just goes to show there is no predictions in this disease. Oh wait. I take that back. I predicted that they would want me to start Occupational Therapy for my hands (especially my left hand). I was right. But I was expecting it, so I was not upset about it. In the long run, it is a good thing.

I knew two months ago that my hands are starting to slow down and continuing to weaken. My job is becoming more difficult in working cash transactions. My typing is starting to slow down, let alone using the shift key (and reaching for “a’s” and “s’s”) with my left hand is not so great. I think the first key that will stop working on my computer is the backspace button. 😉 I am still able (thankfully!) to maintain function, like putting in my own earrings, makeup, tying shoes, etc. It is nice that we are not in cold weather yet. When I get cold hands, they just lose all function. But we are not to that point yet…still enjoying the rest of summer! 🙂

Anyway, yes, I did start OT. My first session was on Wednesday. Mom and I ventured down to the Liberty Children’s Hospital for a late night session. It went well. Better than I was expecting. The main issue is trying to strengthen what muscles I have left–trying to preserve it as long as possible. Since April, I noticed more weakness. Typical I thought, until my left ring finger started to curve in. I noticed that the first part of July.

Here is the anatomy of my left hand. Notice the muscle atrophy of the palm and how my bone at the bottom of my hand by the wrist stands out. My thumbs are also like this. The muscle stops receiving the messages from the brain to function, due to the tumor wrapped around the nerve that coordinates with the area. The tumor wraps around the nerve, cutting off the messages and thus, atrophy. I think I would have found anatomy class interesting. Now I regret not taking the course in high school or college. Anyway, also, notice the ring finger. This is the position that it is in at all times. I had already been doing some “therapy” exercises on my own such as trying to play scales on the piano. Just keeping it stretched out and moving. There is nothing to do about the numbness, just mostly keeping them moving.

Although you cannot see it in the pictures, I would like to point out the best feature of my hands (both hands!!!) DOUBLE JOINTED FINGERS!!! A lot of my own accommodations for getting around to do things is being double jointed. For example: When I put on my earrings in the morning, I grip the back of my earring but I cannot hold onto it without using my double jointed thumb for more stability. The OT was taking measurements for different exercises and told me not to cheat, because I was using my double jointed moves. But it is hard to perform normally, because I have already found ways to accommodate living daily and so it seems normal to me until someone points it out.

This is my right hand. I also have atrophy in the palms and numbness but my fingers don’t curve in yet. I was just taking this picture so you can see the atrophy in my thumbs. Both are like this, but my right hand is the worst. See the dip? That is where the muscle used to be. It started in my right hand when I was a sophomore in high school, but it was not until later college years that it started to get worse. Just a part of me now. It used to bug me, but I don’t notice it anymore.

So, I have several strengthening exercises (both finger and hands) to do daily with a soft putty. It is in no way soft! It is quite the workout! And also, I wear a splint on my left ring finger to help strengthen the muscles. I go back for another session August 29th.

The best part of today was upgrading my phone. (finally!) It is just a simple T9 phone from Verizon. Nothing fancy, except the orange cover. It was that or black, but I figured orange would be good to find in case I drop it or lose it. Funny, the guy said the orange is labeled as “Hazard orange.” Guess it is a good fit for my phone. 🙂 The keys are a nice size and separated a tad so texting is smooth so far. I am thankful for that as that is a big part of my communication. I am still looking into a Captel landline phone as well.

The MRI of the spine showed that the tumor growing on the inside of my spinal cord at the C3-C7 area has grown. Also, the tumor is producing fluid which is adding extra pressure on the spine. My parents have noticed me curving my shoulders more. I have always had bad posture since the surgery in 2002. But some days even more I can feel tightness and pressure so standing up straight is difficult anyway. I am to watch my breathing. Not being obsessed about it, but keeping watch if I ever find that it is hard to breath or having pain breathing…but the tumor is slow-growing so I just have to keep that in the back of my mind.

Treating this tumor, I have a few options. I must be thinking and praying about these options before my next MRI on the spine only in October. There are two oral chemo pill options, a round of radiation (but unlikely), or have surgery to remove the tumor. Surgery is a last resort, but we also don’t want to wait until I have respiratory or diaphragm problems, so it is up in the air right now. I really have to sit down, write out the pros and cons, think and pray about the options and talk with my family…then talk with my doctor in October. I want to be prepared to discuss, because if there is an increase in size or more fluid, then action must take place. So, if you remember, please pray for me (my family and doctors) on this as it is important.

I will say one thing though: God sure has blessed my physical body. My doctor said that he knows my case, but for some other doctor to come in…look at my MRI scans just from the spine, the first question he thinks they would ask is, “Can she walk?” The answer is yes. Sure my right ankle continues to curve in and weaken, but I can walk. I can even walk fast (my version of running), climb stairs, get up and down off the floor and chairs, lift things, stand on my feet for a week straight while painting, drive and so much more. My doctor emphasized that my MRI scans do not show who I am. Coming from him–after just discussing all the things that are going wrong, possible treatments and things to watch for…that meant a lot. More than he probably realizes. I think it was God’s way of saying, “My grace is sufficient for you. For my power is made perfect in [your] weakness.” (2 Corinthians 12:9a). I surely cannot do this without Him.

More to come…


Filed under Adjusting to NF2, Hospital Trips

Cursive handwriting.

It is a dying art. At least that is my opinion. Not too many people I know write in cursive. A few I can confirm: my mom, my grandmas, one grandpa, and just a few older lady friends who write me cards. I really can’t say that I know anyone my age that writes pure cursive at all times. Think of how many generations wrote in cursive! It is almost like a language: when you stop using it or practicing, you forget it. I realized this during yesterday’s spontaneous lesson.

I just finished a book called, Signing Their Lives Away: The Fame and Misfortune of the Men Who Signed The Declaration of Independence, by Denise Kiernan and Joseph D’Agnese. It is a really interesting book! So often we only hear about the famous men such as John Adams, Patrick Henry, Thomas Jefferson and Benjamin Franklin. There are 56 signers and for most I had never heard of their names before, which means that I had a great history lesson reading this book! Fascinating to read about their upbringings/occupations, impact of the revolution, their duties during and after the war in public service, and how their lives ended.

Now, obviously, these men did a lot of writing. They corresponded to each other in letters, wrote documents and edited them using paper and a feather tipped in ink before the documents ever reached the printing press. And people think typewriters were a pain. 😉 Now, the signers names caught my attention: Some of their names are shortened, such as only writing the first two or three letters of their first name before they affix their last names; some signatures are big–such as John Hancock, who also had excellent penmanship; some are small, and others are a bit sloppy–such as Stephen Hopskins (Kiernan and D’Agnese. p. 38, 50).  Fifty-six signatures and they all had one thing in common (as far as writing style goes): they are all in cursive. Let me say that again. These famous signatures are written in cursive!!!

I thought to myself, “When was the last time I wrote in cursive?” The answer: probably 5th grade. We were required to write in cursive in elementary school, then had a choice in junior high of what our preference was in writing. I liked to write fast (still do), because I think fast. Cursive took me so long to write, so I opted for a sloppy something in between cursive and print. I sometimes use an uppercase cursive “L” for paintings, but that is about it. This was a wedding present for my best friend back home:

Thus, my thoughts all came to one conclusion: I must write in cursive! I borrowed Mom’s “feathered” pen–she had attached two fake daisies and leaves to the top of a pen, seemed feathery enough!–and off I started with vicarious intents! I got my “T” down, but my hand could not follow the motions that my brain was trying to remember. I ended up just sitting there at the table staring at a blank piece of paper. It was then I decided that if signer John Penn could teach himself how to read and write at the age of eighteen (p. 202), then I could relearn cursive handwriting! I googled “How to write in cursive” and found myself with oodles of practice printouts from www.abcteach.com. I found the experience enlightening. My dad noticed and said it was actually good Occupational Therapy. Genius! 😀 If I graded my practice sheets, I would probably given myself a B-. HAHA!!! Serious though, the “Q’s” and “Z’s” are somewhat ridiculous.

After a quick practice, I wrote a short paragraph. What do you know?!? My handwriting is actually legible!!! 😀

I enjoyed a short “back to school moment.” The hardest issue for me was not lifting my pen. A website called “wiseGEEK” says,

When writing cursive, never remove your pencil from the paper in the middle of the word. All the letters are connected together through a series of loops. This gives the letters an appearance of flowing together                                       (Conjecture Corporation, 2003-2012).

I am not sure if I will write all the time in cursive. Maybe here and there now that it is fresh in my memory and good therapy for my hands. Regardless, I think it is beautiful art within the written language (when written smooth and in the author’s own signature style). It is something that I hope we never lose completely. If you have not written in cursive for a while, try it! I think you will find that your hand remembers the motions of the letters quickly once you get started. Have fun and more to come…


Kiernan and D’Agnese. (2009). Signing Their Lives Away: The Fame and Misfortune of the Men Who Signed The Declaration of    Independence. Philadelphia: Quirk Books.

“What Should I Know about Writing Cursive?” wiseGEEK: clear answers for common questions. Conjecture Corporation, 2003-2012. http://www.wisegeek.com/what-should-i-know-about-writing-cursive.htm.


Filed under Books and Movies, Paintings, Random