Category Archives: Adjusting to NF2

October 16, 2013 · 10:39 pm

Rebalance

The Olympics are always a fascinating two-week event to watch (Even more so, the Paralympics that come a few weeks after!!) Although I enjoy watching the ice skating, curling, and speed skating competitions, my favorite of the two seasons (winter/summer) is the Summer Games. Last summer, the Olympics were held in London–which I found fabulous as Britain/UK is on the top of my own “Mel’s World Travels” sort of wish list. I had been reading several books on the reigns of the different kings/queens and through some church history already, so when CBS would air the “interesting things of London” segments, I felt like a school kid.

At that time, I worked early morning shifts and would be home by lunch for the rest of the day. This meant that I had the chance to watch the afternoon events that you don’t normally see in the evening time as they get crowded out from the more popular ones. I got to see sailing, archery, table tennis, equestrian, judo, fencing, taekwondo and I watched some weight lifting. It was all very interesting.

Every sport has an attribute in which I feel they put more attention to more than another sport would focus on…for example: soccer: kicks and feet motions; synchronized diving: timing of the downward movements; equestrian: pose and maintaining your horse; rowing: upper body strength; and my favorite, because I have none–gymnastics: BALANCE!

I should correct myself: I don’t have much balance, but anymore these days even my “much” balance does not account for much. 😉 I could venture to say that I somewhat occasionally perform floor exercises like a gymnast, but less graceful in the air, more flapping of arm movements and I never land on my feet (quite the opposite.) However, the balance issue is currently being worked on during these past few PT sessions and ones yet to come. My rehabilitation doctor at Children’s prescribed for me to get ankle braces. These aren’t just any ankle brace–they are AFO braces. (I like the abbreviation–it stands for Ankle-foot Orthotic.) They look like this:

ankle-foot-orthosis-afo-80454-3202943 medicalexpo.com

What you see is what it is–huge, feels like hard plastic, from knee past the toes bondage for your feet. So far the only fun part has been my display of cool designed knee-high socks, which I actually only get to wear on the right leg as the neutral colored compression stocking takes the left leg. But with jeans on, nobody notices anyway. Otherwise, these AFO’s are hard work! I feel I am training for the Olympics, except in my case, I am “re-training” my brain to use the muscles that have weakened after years of atrophy. Also, these braces are helping my right ankle to stay straight when I walk (but I feel it trying to twist) and in time, I hope the added weight my left leg gains from the weak right side will balance out too.

The exercises so far have been small but aiming at balance. It is unbelievable how it can make your legs feel like Jello within a few minutes! We took another strength-goals test today to see how I am progressing…even though it has had two DVTs, my left leg is the strong leg! But that doesn’t surprise me. Usually by the end of my session, I am ready for the braces to come off, but today I went an hour longer after my PT left and did normal routine things…then I was ready to take them off! The walker proved to be a useful resource in stability as I walked around the house just fine today; best part was when I needed a break, I locked the wheels and sat for a minute to catch my breath.

This is only the beginning. Change will not happen over night…it is going to take time, effort, and a lot of sore muscles. In the end, I should (and hope) be able to wear the braces regularly in a day; I anticipate less falling, but that may just be inevitable.

I am ready for the challenge: it makes me feel like an Olympian.

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The Olympic Stadium. Athens, Greece.

But he knows the way that I take; when he has tried me, I shall come out as gold. Job 23:10 ESV

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October 14, 2013 · 11:29 pm

The Secret Ingredient

During last weeks PT session, my physical therapist and I made small talk as she was helping me get into my new ankle braces (more to come on that story). I told her that my only weekend plans was to attend the Taming of the Shrew play with my sister at Cedarville University. (The play was AMAZING!) Because I had nothing else, she invited me to join her and her husband for the annual Sauerkraut Festival in Waynesville.

http://www.sauerkrautfestival.com/

They have attended for a few years in a row and she proceeded to tell me all about the different things they have there at the booths and the food. When she mentioned that they put sauerkraut in desserts too, I gave an “ew” remark but was assured you don’t taste it, it just adds moisture. Like a secret ingredient. I am not a sauerkraut fan, but decided it would be fun to tag along and experience the festival for myself.

Around these parts, every town has a few festivals special only to that town. For Cedarville it is Cedarfest held at Labor Day. The Chamber of Commerce writes:

Cedarfest is an annual Labor Day Weekend festival in Cedarville, Ohio; the “Home of Labor Day”. Cedarfest has something for everyone in the home of the Father of Labor Day.

http://www.cedarvillechamber.com/

It is a really fun-filled weekend. We attended different events last year–my favorite was the pancake breakfast served at the fire station. 🙂 Anyway, Yellow Springs holds the Art on the Lawn Festival and an annual Street Fair every October. Young’s Dairy holds different events in the summer and in Springfield (also during Labor Day weekend), they have an annual “Fair at the New Boston” festival, in which you take a step back into time. There are countless others–if you attended them all, your summer weekends would always be booked. But I think these traditions are fun and they provide opportunities for vendors to share their home-made products with people and it is a social time.

Yesterday was no different, except this was by far the LARGEST festival I have ever seen! Wow…crowded! It reminded me of back in the days where the markets were on the lower section of the city or right outside the city walls…full of vendors selling their meats, baskets or fabrics, with live chickens clucking around. 🙂 There were no live chickens in Waynesville, but the street was still a sight to see.

Although she was not there as a PT–it was kind of like hanging out with an aunt/uncle–I felt more confident with her being there as we took the walker I just bought Friday and it was my first time using it; she showed me the proper ways to get on the curb and such. I am so thankful that I had the walker, because it was not only great for balance as we weaved our way through mass amounts of people, but the seat also came in handy when we ate lunch and for the souvenir bags of homemade goodies.

The town was set up like a driving street. You walked in one direction on the right lane and the other direction in the left lane…traffic jams were ultimately inevitable. The main street of vendor booths was a mile long. We started on the side in which you climb the hill…so by the time we reached the other side and turned around, we were walking downhill. (Another time I was thankful for the walker!) We took our time…mostly “window shopping” but every once in a while stopping in a booth to look around at the products or test taste the food. We tried the sauerkraut salsa at one booth…my tongue felt like it was on fire! Thankfully, there was a booth from WI not too far down, so the delicious cheeses set that problem straight.

We had sauerkraut pizza for lunch and it actually was really good. If I was served the pizza at a restaurant without knowing what the added toppings were under the cheese, I would never think to say “sauerkraut” as an addition. They look like onions anyway. But this pizza was good–also had sausage and green peppers too. Towards the end of our two mile excursion, we stopped at a booth that had desserts (sauerkraut: secret ingredient). Among the options, I bought a brownie, a slice of pie, and a whoopee pie. Still seems strange, but the brownie reminded me of German Chocolate cake and I had the pie this morning at breakfast with coffee. I liked it better than the brownie.

Yesterday was a fun day. I am glad I went and glad I had my walker to help me as I really pushed myself physically in all that walking. By the time I came home, my body was ready to just sit; so I did. Even after a good nights sleep, my body today was feeling the effect of yesterday’s exercise–my body was just slower moving today. It took me all afternoon to get papers organized out of my file box for a meeting tomorrow; my hands were not cooperative. Then it took me over a half hour just to change the sheets on my bed–by the end, I was breathing like I had just ran a 5k.

My strength is not found in the cups of coffee every morning, nor in the stability of my walker–but by God’s goodness. His strength is no secret ingredient…it is the ingredient to my life and the reason I live through another day.

Strength will rise as we wait upon the Lord
We will wait upon the Lord
We will wait upon the Lord (x2)

Our God, You reign forever
Our hope, our Strong Deliverer

You are the everlasting God
The everlasting God
You do not faint
You won’t grow weary

You’re the defender of the weak
You comfort those in need
You lift us up on wings like eagles 

“Everlasting God.” Chris Tomlin.

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October 8, 2013 · 11:59 pm

Driving: Take Two

Yesterday started out like any other typical “It is an important day today!” —

tumblr_lm5yg6o9vh1qjt7foo1_500 www.tumblr.com

Let’s just throw out the fact that it was a Monday.

Yep, the day in which I was to complete part two of my driving evaluation tests could not have started out with any better of the typical important day fashion: sleeping past my alarm and Mom waking me up fifteen minutes before we had to leave. Her ever-calm assurance in these situations met my panic mode as I stumbled out of bed and started going through my morning list of important things I had to do (let alone getting somewhat presentable for the day): feed Muffy, take medicines, etc. “And I need coffee.” Mom said she would make sure Muffy is fed and start some coffee.

Only a few minutes past when we had to leave–with fresh coffee and an apple for breakfast–I get in the car and feel like I can finally catch my breath and looked forward to getting the test over and done! It amazes me that something like this can consume your mind. I do not have a problem with my driving–and yet when doctors first ordered the evaluation back in August, all of a sudden the restriction caused me to doubt my driving–so much that I was having dreams of being in accidents. After the first evaluation September 19th (even though I passed), I still had restrictions until I took this second part. I was able to practice in empty parking lots, which boosted confidence, but it is not a main road.

Feeling confident, I sign in and a few minutes later head out the door with the PT to the Student Driver car. I have only driven one of these official cars once for Driver’s Ed class…that was ten years ago. My instructor (who was also my history/government teacher) must have trusted his students as for our actual driving license test, we could choose between the Student Driver car or one that we had that we were more comfortable driving. I chose the latter of the two options…nothing compares to our family’s 1987 Honda Accord. It is like an heirloom. It witnessed at least thirteen years of high school drama from the parking lot between me and my sisters. Pretty classy!

Anyway, I would have felt more comfortable in my own car (logically), but since it was not a possibility in this situation, I tried my best to adjust to the Student Driver car even though there were many things very different from my car. I found my biggest frustrations being their steering wheel having these huge box-like attachments right above the “9” and “3” area..which is usually where I place my hands. (Note that this test was caused by the concern of my hand function in the first place, so the scenario didn’t suit well.) I also had a problem with the side view mirrors not having the small blind-view mirrors. (Those have saved me from numerous episodes of changing lane woes and proved so when I was doing some reverse exercises with cones in the parking lot.)

We finally get to driving around in a very pretty residential area–being fully determined not to mess with my chances of the evaluation, I kept my focus. Once we determined that the motion for “keep going straight” involved two hands (better clarification), I meandered, slowly, through the neighborhood. When we finished and headed back, the PT asked me how I felt about the driving and I told her my honest opinion (seeing no problems). Never assume a professional PT sees your driving the same way. As we met to discuss the results with my Mom, the PT explains her two things that she sees as a concern (which I do not see in context of the driving experience how they fit in properly to what I thought was the main concern : the grip and strength of my hands!) As soon as I figure out that I still do not have the official okay to drive and that I must return one more time, I bluntly express my point of view in one short sentence. I set up my next drive for the 21st and cry in the elevator–expressing my frustrations to my Mom. There are some things I just do not understand and what they want to see in these evaluations from me is what I do not understand.

There was good in the morning though…I can drive normally in my car as long as one of my parents is with me. Talk about feeling like being back in high school, but I am very thankful for this outcome (even if it is still an inconvenience to our schedules.) By driving  the roads, I can now get back to feeling like a normal driver and hope I spend less time dreaming doubts and trusting that God can use this time to help me gain more confidence as yesterday was my first time “on the road” since August.

But yesterday I also felt my conscience tug at my heart over my attitude at the PT right before we left. I did not mean to bluntly express my opinion, but it came out. And I feel bad for it; I hope I did not ruin her day. I am sure it was just as awkward and maybe frustrating for her to navigate a deaf person around a neighborhood and through cones in a parking lot. In my childish actions in response to the PT’s professional opinion, I see how wrong I was and asked God to forgive me.  Taking my driving evaluation as a lesson: These are events that I  cannot go back and change, but instead, learn from it and set out focusing on doing better next time.

“Let no corrupting talk come out of your mouths, but only such as is good for building up, as fits the occasion, that it may give grace to those who hear.” ~Ephesians 4:29

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October 6, 2013 · 10:34 pm

Homecoming: thoughts of heaven

This weekend was Homecoming Weekend for the university in town. Although it meant nothing to me (besides a fun parade and getting pumpkin chai with my sister afterwards), there were many class reunions during the weekend where the alumni had returned to their Alma Mater to celebrate their years of attendance and also seeing the vision of the school continue through the current students. This year was also special as it was the coronation of the new university President.

Homecoming is coming home. Ok, so maybe college is not home…nor your high school, but when you are saying “homecoming,” it is the welcoming back notion. I have to admit though, when I was in college, my term for “coming home” literally meant calling Mom and saying, “I am coming home.” Home. My mind has been thinking about this word…I think I started when we took a little weekend road trip to Toledo.

After my mom remarried, we moved to Toledo. I was about a year and a half old or so. We moved to Colorado a few months after I turned six years old; my first memories of a “home” were from there. As we visited a few weeks ago, I realized that all my memories of Toledo were of places, such as the tunnel you walked through under the main road to get to the zoo; the Bob Evans we passed to get to our house; the house itself (I can still see the inside); the church we attended (but when we actually attended church I noted how much smaller the sanctuary was compared to my five-year old mind); MacQueens Produce Farm and a really awesome ice cream place by car lot (which I finally got the name: Jan’s.) I remember things like my classroom at school, getting red tokens for lunch when you wanted pizza, learning the alphabet, and being Mother Goose in the end of the school year play. I remember singing a Honey Tree song for church and playing in the turtle sandbox or eating orange pushups. But what I don’t place is people’s faces. I only remember them through pictures.

All that changed in Colorado. We moved in the summer, meaning I started a brand new school that Fall. The kids in my class were the peers I attended the rest of my school years with, graduating together and continuing to keep in touch here and there (thank you Facebook.) Home was no longer just things or places…it involved people from town, school and church. Home, physically, was the house…a place where I could be myself, protected from the world. In the bigger picture, Colorado was home. I still consider it home. It is my Alma Mater.

Don’t get me wrong, I believe God moved me here for a purpose…especially in the area concerning my health. I now have friends, live closer to my extended family, a “home” church I have attended since the move and many open doors for my paintings. So why doesn’t it feel like home? Time may play a part in it: we lived in Colorado for almost twenty years (seventeen to be exact). Whatever the cause, I think it fits into the season of the soul..this current road I travel, with thankfulness.

Home brings thoughts of heaven. As my body continues to decline, [yet I am still becoming all that God has planned for me in this life] there are times when I do honestly question God in aspect, “I don’t know how much more of this I can handle.” Maybe I am using thoughts of heaven as an easy way out of this worldly suffering. Heaven is joy…and I look forward to that Homecoming. There will be nothing like it in comparison. But here, in the now, I should not be praying centered around myself, but God. It is only then that this temporary home (my body) will find strength in thanksgiving, even in the suffering:

Man-centered prayers tend to ask, “How can God help me with my problems?” while God-centered prayers consider, “What is God doing in this? How can I join in God’s purposes here?” This changes not only what we pray for, but also the way we pray.

Tim Challies. “Persevere in Prayer.”

Philippians 4:4-7

~Mel 🙂

*http://www.challies.com/articles/persevere-in-prayer?utm_source=feedblitz&utm_medium=FeedBlitzEmail&utm_content=5575&utm_campaign=Four-hourly_2013-10-02+12%3a15

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October 1, 2013 · 8:06 pm

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.

DSCN2896

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

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September 27, 2013 · 11:59 pm

6 a.m. to 6 p.m.

Yesterday I was up before the sun. Actually, my parents were too as the sun did not come out until we had already started down the road towards Cincinnati. It was a lovely morning though. A few times on 42 South, while sipping my coffee, I thought, “This is like a picture off a postcard.” Then we hit the interstate; at least traffic was flowing well and we made it to Children’s Hospital right on time for my day of appointments.

Yesterday marked three months of being on the chemo treatment, Sirolimus. This chemo requires me to have a follow-up appointment every month with my doctor, where I present them with my log of times I take the medicine every day and other recorded health issues I keep track of during the month. I am still doing well on the drug considering all that has happened over this past month. My main doctor asked me my thoughts on it again–if I thought it was benefiting me and if I wanted to continue. Last month’s check-up was easier to confirm better answers as I had MRI scans to help me clarify that tumors were looking stable and it was a benefit to continue on because of that fact (and also two months was not enough time in my mind for a fair trial of the treatment.)

But yesterday I just honestly said, “I don’t know.” There has been more changes over this past month that have been more consistent: the pressure in my lower spine, the increasing weakness/numbness in my hands, more hearing loss in the right ear, worsening lack of bowel movements. Plus the steroids are making my stomach feel heavy and my balance is worsening. By the time I saw my main doctor around 2:30pm (after the whole team throughout the day otherwise), my brain could no longer function in hard questions. All I could think of was how I am not certain what this next MRI in November will show; it is hard not to wonder. I did decide, however, to continue on the chemo as planned until the MRI on November 5th. I will see my doctor soon after and we will go from that point whether or not to continue the Sirolimus.

Yesterday also included seeing the whole “team” of doctors. I do this every six months. I see my main doctor and his small team that I communicate with via email every week for labs and questions; I see four other specialists for different areas plus my social worker. It gets repetitious to have to talk about my problems to every doctor, but they ask different questions and then take what answers I give them, plus their own observations, and discuss together different concerns and possibilities. I cannot tell you what a privilege it is to be a patient with a team such as this! They truly have my best interests at heart and I know this is true for all their patients…just very humbling at how much they circumference and still take time for each individual. 🙂

Usually these “team” doctor visit days start around 8am or so and we usually get out by 3pm (on good days). But because I have had high blood pressure, a bit of last-minute things were added to my schedule before I could leave. And so by 3pm, I was on my way to the radiology department for my ultrasound/x-ray…and in my fatigue and hurried walk, my right foot hits the floor hard, resulting in tripping and flying to the floor. I was fine, but because I had fallen two days earlier, I reopened a wound on my left knee…which gave me a nice mess this morning as I have still been bleeding (thank you blood thinner pills.) Good news is that I think we got that mishap under control, but it added more time to get out of the hospital yesterday. (A big thank you to my interpreter as she was with me the entire day as well.) We finally found ourselves leaving Cincinnati around 6pm. It did not take me long to fall asleep in the backseat.

Although yesterday was a majority of just talking…as the biggest problem of numbness in my hands and feet they can’t do anything for in relation to medicine and I will never regain that lost sensation…I feel that it was a good day (long), but good. Over the next month, I can pretty much guarantee more changes–whether physical or even to the routine agendas like when to get lab work completed. I can only take it but one day at a time, one step at a time.

P.S. I read this verse earlier in the week; reading it from a different translation made a certain phrase stand out. I emphasized it in bold.

I have been crucified with the Anointed One—I am no longer alive—but the Anointed is living in me; and whatever life I have left in this failing body I live by the faithfulness of God’s Son, the One who loves me and gave His body on the cross for me.

Galatians 2:20, The Voice

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September 24, 2013 · 11:57 pm

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.

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– – –

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

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September 19, 2013 · 11:59 pm

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)

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September 16, 2013 · 12:13 am

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

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September 10, 2013 · 11:33 pm

Like Plain English

I have never been a Shakespeare fanatic. Mostly because I never understood the language of his plays. In high school, I read and watched a few plays (movies) in English class and did the homework discussion questions but always seemed to grasp the scenes differently than others in the class.

“So what is going on in this scene here?” Or, “What does this character mean when he says this?” I would sit and hope that I would not be chosen. I didn’t want anyone to think that I was not understanding.

Don’t get me wrong, I didn’t have this problem all the time–only when discussing Shakespeare or poetry (like his Sonnets.) I love books, English class, creative writing and diagramming sentences. However, if I made a list of my favorite classic authors of all time, Shakespeare would not be in the top five. But I have discovered something that is helping me appreciate the works of Shakespeare. It is called, “plain English language.”

Barnes and Nobles could just very well be what I consider a great hangout place. It is almost like a huge library where you have freedom to chat and walk around with your coffee. I often go in to the local store just to look around at the bargain books, read a few children books and see what is newly released. In this meandering a few months ago, I headed towards the playwright section. Mom and I had watched James Stewart’s old film, Harvey, and I knew it was based on the play of the same name by Mary Chase. I wanted to see if there was a copy of the original play. There wasn’t, but I found the play Our Town, by Thorton Wilder, and skimmed through the text remembering seeing the play in the Creede Repertory Theatre and crying during the final scene. Excellent play.

What fascinated me the most in this section was the amount of Shakespeare plays available. I think all (even his Sonnets) were on the shelf. I didn’t bother to skim through them, but picked up this instead:

9781411401006_p0_v1_s260x420 www.bn.com

It is genius! This morning I sat at Beans-n-Cream sipping my Pumpkin & Spice coffee and found that I was not only enjoying the play, but understanding the play. Shakespeare is on the left page–plain English translation is on the right page. Maybe this is considered a “cheat sheet,” but in my opinion…if it allows me to understand the text of someone who is considered to be one of the greatest writers in the English language, then it is worth the modern translation.

My everyday conversations can parallel much to that of a Shakespeare play. As much as I do my best to lip read, words and phrases constantly get mixed up; I miss context or transition clues to next conversation; and I sometimes just say, “I have idea what you’re talking about.” Lately, if it really important– after attempting fingerspelling, but obvious that I still am missing one or two words–my parents will write it down. Like plain English and I understand.

When it comes to translation in communication, I think I use a lot of different methods: sign language interpreters, text messages, closed captions on television or movies, and a Captel service when talking on the telephone. After my hearing dropped and I returned the Phonak Cros, I decided a better investment would be a Cap Tel landline phone. Up until this point, I have been using an internet caption service through Sprint. It was free and accessibly convenient in college. But it is getting more inconvenient: To make a phone call, I would have to start my computer, get on the site, log in, put my number in and then the person’s number who is receiving the call, press enter, wait for Sprint Cap Tel to call me, press send and finally be set up for the conversation.

It is not like a TTY or landline phone where captions are fast, accurate and promising not to cut out of a conversation. (Believe me, many times during chats with credit card companies gets frustrating as you never get the same representative.) I will say that I found humor though…because the captions are based on voice recognition, there were many laughable “read between the line” moments. I can relate–happens to me in real life daily.

But these woes are no longer my concern. I am now the owner of a Cap Tel captioned phone!!!

MI_6356www.adcohearing.com

It works fantastic and I finally understand the whole phone conversation! It provides accuracy and convenience (especially safety for emergency phone calls). On the bottom of the screen there are little boxes…the left is mine and the right is the person I am calling. When talking, the box flashes, so I know when to listen and when they are done speaking. My box flashes too, and st often in red, which means I am talking too loud. Ironic, since most of the time people say I talk too quiet. This phone allows me to receive calls, make my own appointments, and best of all-talk to my grandparents (as well as other family and friends.) Out of all the new accommodations made recently and still to come–this is placed in the top five favorites, perhaps even as number one.

Most people do not listen with the intent to understand; they listen with the intent to reply. ~Stephen R. Covey

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