Tag Archives: independent living

The Room at the Inn

I’m not much help in preparing the bedroom upstairs for my friends visit this weekend. The main problem is that I just can’t get up the stairs…every step says, “Caution!” Like a trail of red flags, so I just don’t enter. Even if I got upstairs, I am useless in changing sheets; So I resolved to help with any needs for cleaning or preparing either on the main floor or the basement (where we will be using my painting studio to decorate with fabric paints the t-shirts for Sunday’s NF Walk.) ūüôā

With thoughts of vacation, I couldn’t help but giggle in memory of my hotel experience from the Colorado trip two weeks ago. Last Fall, when I was having weekly PT and OT sessions, my Occupational therapist and I discussed a wide variety of ideas to supplement my needs in the areas where I was physically struggling to perform the daily tasks. She also helped me be aware of resources available for when in time I needed more help. Most of the “when in time” resources seemed irrelevant at the moment, since my physical body overall was doing pretty well.

“When in time” moments started catching up to me around February–I think the first being the shower chair. At first I was embarrassed–even to show people my room was enough, because with the bathroom door open, you can see the raised toilet seat handles. Not your typical bathroom. But I quickly dismissed this notion of blush, because it is when I realized that being independent in this area, I saw a blessing.

My OT mentioned a few other future reference ideas, one being the handicap room in hotels. At that time, I had only purchased the walker for my PT exercises as balancing in my Ankle FootDrop braces was near impossible. Even in February, I only used my cane when I left the house. Now the use of my walker is 99%. I even purchased a second walker to keep for house/back patio/basement use, while the older one is left in the garage for when I leave. The plan has worked smoothly, I think.

There is a first time for everything and the Colorado trip held no exceptions. There was the new way I checked through security, pushed in a wheel chair and now the hotel room. Mom and Dad helped reserve a handicap room, but before one gets to their room, they must get in the hotel. We pull in the parking lot and see the main lobby doors cut off in entrance by the yellow “Caution” tape. Looked more like a crime scene from Law and Order episodes. Mom goes to check-in using the only other door on the building,which is the back entrance.

The room itself is quite nice. The only significant difference I noted between this labeled room and a regular room was the bathroom. The doorway allowed room for a walker or wheelchair to easily enter and maneuver around. There was a handle attached to the wall by the toilet, along with a telephone. I suppose if you fall off the toilet, the assumption is that you can reach the telephone to call for help. The shower “chair” was what made the whole first-use-of-handicap-room experience worth it (in memories sake)!

In conquering difficult situations from the eye and body of a disabled person, I often mutter to myself (sometimes probably louder than I should) the fact that if TLC ever wanted a new reality show that I would volunteer; a show following individuals with disabilities and how they overcome the obstacles they face daily…what ones make them cringe, cry, laugh. What situations are easy or ones that are absurd. Most importantly, how it affects those closest to them. Anywhere I travel, someone has to retrieve or pack my walker from the trunk; I can get locked in public restroom stalls, because my hands can’t get the knob to open; or retrieving items at the grocery store often requires a helping hand. Mom and I like to swiftly shop our lists separate, so the last time I was choosing a coffee creamer, I asked a kid looking at the sour cream next to me if he wouldn’t mind helping me get the bottle, as I was nervous to drop and have it crack,¬†then spill (just from previous experience at home.)

It is in this “reality show” thinking that I had to laugh. I envisioned the crew filming me as I show the viewers how the shower is set. It was like camping. At the one end, the shower is the standard shower head (but you could detach it)–the other end is “the shower chair.” Now, I can’t complain, because being able to sit was appreciated; however, this wooden beam of a chair that you folded up and down (but was too heavy for me to fold up upon wanting to get out of the shower) was right in the way of how you normally exit a bathtub style shower. I was barely able to keep a grip on the handles and was thankful not to have fallen completely out. The next shower, I had to have Mom fold the beam up for me before I exited.

I understand that some hotels are older, but in the newer hotels–like the one we stayed in the night before our fight back–I do not understand why there has been no consideration for the shower set-up in handicap rooms. One would think that a walk-in style shower with a sturdy set chair attached would be more efficient for those who cannot get themselves in a bathtub shower. The thought just crossed my mind that weekend as the first hotel gave me much more insight to think of as well: if you’re remodeling the lobby, please make your residents aware that there are missing tiles on the floor when they come in after two days of no continental breakfast to find the place empty of chairs or tables. We used my walker to transport the served cereal back to our room. ūüôā

I may sound on a rant but I don’t mean for this to be so. I just want to make people aware that life brings unseen hurdles in your path and sometimes one needs a helping hand for safety–hence the handicap ramp in the hotel parking lot. Quite frankly, I would not have even called it a ramp, but a slab of steep, skinny, sloped concrete. It was only wide enough for my walker, so if I were using a wheelchair, I would probably have felt safer just hopping the curb. There was no hand railing either; I wanted to quote Marlin from Finding Nemo:¬†

Bob: Hey, you’re doing pretty well for a first-timer.

Marlin: Well, you can’t hold on to them forever, can you?

Bill: You know I had a tough time when my oldest went out to the drop off.

Marlin: They’ve just got to grow up som – THE DROP OFF? THEY’RE GOING TO THE DROP OFF? WHAT ARE YOU, INSANE? WHY DON’T WE FRY THEM UP NOW AND SERVE THEM WITH CHIPS?

Bob: Hey Marty, calm down.

Marlin: Don’t tell me to be calm, pony boy.

Bob: Pony boy?

Bill: You know for a clownfish, he really isn’t that funny

Ted: Pity

ūüôā

Never before my own handicaps and disabilities did I even think of these situations or how an individual lives each day overcoming even the smallest of difficulties. I’m not suggesting that life be easy, because it’s not and experiencing scenarios such as these is very humbling. It keeps me aware of my surroundings and ever thankful for the help in time of deepest need.

*Finding Nemo. (2003). http://www.imdb.com/title/tt0266543/quotes

3 Comments

Filed under Adjusting to NF2, Family Times, Funny Stories, Uncategorized

Cute Shoes

If you recall, I have this knack for cute shoes. I think it could be partially genetic–a family trait that naturally flows throughout my genes, much like my love of coffee and good reads. The artistic eye for cute shoes is also a key conversation starter with strangers. “Cute shoes!” I say honestly and enthusiastically while waiting in long, slow lines at the store. Time suddenly seems to quicken its pace and before you know it, your engaged conversation is ending.

Even though this intrigue of fashion is still very much part of how I complete my wardrobe for the day, it is not as much of an importance of appearance anymore as it is sturdy convenience–although at this point in time, I can argue the fact that it doesn’t matter what is on my feet…I am still prone to ankle twists, bad balance and falling: thus, I still own a pair of cute slip-on shoes that I save for special occasions, just like my bag of make-up. (Secret! ūüėČ )

Because I realize that my walking is declining and my bones are fragile (it is a miracle that I am even walking, let alone have not broken any bones during my falling episodes), I am trying to take the appropriate steps in safety by wearing regular shoes–except that I can’t physically tie shoes due to my hand conditions. My physical therapist had mentioned last Fall during one of my PT sessions that there was a¬†shoe and leather repair store,¬†in which she recommended to her patients. This store specializes in shoe adjustments as well as repairs. My adjustments would be removing the shoe laces and getting Velcro straps.

“Sounds old-timer fashion,” my first thoughts concluded. (No offense meant to my elderly readers.) But when I received my pair of tennis shoes back, I actually think that they are kind of cute. ūüôā

DSCN3430

 

Remember how exciting it was as a kid when you first learned how to tie your own shoes? My Velcro straps enabled me to re-experience that simple childhood joy.

The Sovereign LORD is my strength! He makes me as surefooted as a deer, able to tread upon the heights. Habakkuk 3:19, NLT

7 Comments

Filed under Adjusting to NF2

My Choice

This may seem like a sudden decision (which it is); but it has been long-time coming. It was one of the hardest choices I have yet had to make, but this time it was my choice and that alone makes me feel like an independent person.  I have decided that for my safety and the safety of others, I am finished driving.

This decision is not a result of just one physical area, but a combination of many since February: increasing numbness in right hand and especially weakness in the thumb, upper arm strength, weakening right ankle, my balance worsening, and overall energy after hoisting my walker in and out of the backseat while running errands. It is not that I am a bad driver–but God used one weekend to show me that I should consider my driving limits before a worst case scenario occurs. If He hadn’t intervened, my body and mind would still be at conflict with each other about this situation. I knew this choice would be coming, yet I wanted to go as long as possible before I had to finalize the word.

Now what? I am not sure. Ten years of driving, owning a car for five. Like my short-lived apartment experience, I have many memories. Many stories of me and my car. I am now just shifting driver seats to what I do best anyway: co-pilot; but it will take time to adjust to the transition.

For everything there is a season, and a time for every matter under heaven. Ecclesiastes 3:1, ESV

13 Comments

Filed under Adjusting to NF2, Uncategorized

When You Give

In the second grade, I was in Mrs. Brumfield’s class. There are a few special memories I think of when remembering Mrs. Brumfield and her class: She always wore bright red lipstick and because she used my personal book, Abel’s Island, to¬†read to the class for our afternoon reading time, I have a smudge of that red lipstick in the front cover of my book. It still remains one of my favorite children novels.¬†Our circular building held classrooms divided like a pie and our door faced the playground–I especially liked the monkey bars, so much that I gave my palms blisters; but once my name was written on the chalkboard and I had to stay in from recess.

Mrs. Brumfield’s favorite type of animals were pigs. We even made “pigs” using pantyhose stuffed with pillow cotton and after we tied off the curly tail, we hot-glued on felt ears and sewed buttons for the eyes. My pig has pink ears and purple buttoned eyes…and it is in my special box. On our birthday, we got to make a chart using pictures from home to tell the class a bit about our favorite things and about our family. A family member was invited to attend and sit with us up front, but because neither mom nor dad could attend mine, Mrs. Brumfield allowed my best friend at the time, Stephanie, to sit with me.

At the end of the day, there were two dismissal bells for the bus shifts. Because I left on the second bell, this allowed me ten extra minutes of reading time…as we always ended the day with quiet reading in our own “corners or desks areas.” Being a book nerd from an early age, I took this time seriously and never wanted to leave class at the second bell if I was in mid-sentence. And Mrs. Brumfield gave us a take home assignment, but it was “fun” homework: when it was our turn, we took home a large Ziplock bag containing a book, entry log, and a stuffed animal of a mouse in overalls holding by Velcro–a chocolate chip cookie. Our assignment was to log our different activities of what we did with our new pal. Mom tried to find a few educational activities. ūüôā The hardest part was keeping track of the cookie! The book:

if_you_give_a_mouse_cookie

If you have read either this book or¬†the other,¬†If You Give a Moose a Muffin, the overall concept of the story is the same: you give and they keep asking for more–eventually circulating back around to what was initially given.

Recently, my parents went on an extended weekend vacation back to Colorado. It was not initially the reason why we set the Lifeline for use, but it was planned to have that established before their trip for safety reasons. My weekend was not much different from others. I had a few appointments already set, tasks I needed to accomplish and had some sister chat times. I carried out my days like usual routine–my own breakfasts and lunches. Several ladies from my parent’s Sunday school class signed up to deliver hot meals for my dinners. I cannot tell you how much that was appreciated!! A few ladies contacted me just to see how I was doing and if I needed anything. Genuine kindness.

Mom did ask a girl from town around my age to come in the evenings to spend the night (mainly for my Lifeline factor), but also to help take out trash, clean Muffy’s kitty litter, help with dishes and anything else I might need. We decided this was best in their absence–she came in around 10pm and left in the mid-mornings for her other duties and jobs. It worked nicely and since the Olympics were still being covered in Primetime, I usually was in the basement at the end of the day relaxing and working on a friend’s late Christmas present while watching the Games.

I really cherished the weekend, but also saw how much I possibly take for granted within my family all the extra help they give so selflessly. Miriam would ask if I needed help with anything else before going to bed herself and unless it was something I just couldn’t do, like unbutton my new sweater so I could wear it the next day, I didn’t initially ask for much assistance. Maybe it was embarrassment, maybe pride. Maybe I am used to my family seeing me struggle, like when I try to pick up medicines that have fallen to the floor, and they just come to the rescue without my asking. Or often, maybe I am just tired of asking for people to give their time and help–as I turn more dependent, I am becoming stubborn and wanting to still do things on my own. How do I balance between the two? It is something I am still in process of learning.

Continue reading

3 Comments

Filed under Adjusting to NF2, Family Times, Muffy, Uncategorized

Lifeline

Yesterday morning, I spent two hours at the hair salon getting my perm redone. For the amount of time taken, the result looks lovely (and bonus points to me as having no sense of smell fully pays off in these instances.) Nearing the end, I had twenty minutes of waiting, during which the solution needed to soak into my hair with the curlers still set in place before my stylist removed them. I asked the lady sitting next to me if she could pass me a People magazine…just something to glance at as I waited. “Pointless readings,” I tell myself, but I didn’t read much anyway as I didn’t have my glasses on at that moment.

I did happen to find one good article about a girl my age who lives with Down Syndrome. As I skimmed the blurry article, I was impressed by her courage not to let the disease define her; she had even gone to court to declare her independence rights on choosing where to live. I don’t know her name or the edition of the People Magazine for quotes, but I do remember reading a few sentences where she states that she is an independent person–she just might need a little help sometimes. I had two thoughts: First, I fully relate to what she is saying. She and I may struggle with vastly different physical limitations, but there is a common understanding both in emotional and mental thoughts of what it means for independent living. And second, whether you struggle physically or not, don’t we all have moments where we might just need a little help? It is our human nature; it keeps us humble.

When I first moved back in my parent’s house, I thought I was losing all independence. It took time for me to process that I never lost my independence; living at home ensures that I can live independently. Yet, I am surrounded by family who can help if I just might need it: opening zip lock bags or medicine bottles if Walgreens places the lids in the wrong direction; putting on my compression stocking or clipping my toe nails; carrying my groceries up the stairs or my full laundry basket to the washer. Or in the event that I have car problems, need to get Muffy’s food from the patio but it is dark outside, I accidentally break a dish while loading/unloading the dishwasher…help is there as well. It is safe independent living.

hermie¬†“I’m…independent!” (samefacts.com)

To maintain continual safe independence–while at home–I now wear a Lifeline necklace. Wearing this necklace does not change any part of how I currently live. I still get up in the mornings on my own; bathe and dress on my own; make myself meals and, of course, the morning pot of coffee; I can still write (chicken scratches), type (finger poke), text, and paint; I still climb up and down the stairs, even if it is a slow one-step-at-a-time; and, I still drive, run errands or go to church on my own as long as I have the energy and weather permits me to do so. ¬†The Lifeline’s purpose is to inform others if I needed help–the communication is accurate and efficient. The necklace works only at my home (garage, basement too) and outside property. Once I leave the driveway, I am too far from the sensor for any signals to send. ¬†However, being out in public, my chances of being all alone are quite slim. ūüėČ

When we first set the Lifeline in place, I was confused as to how I, personally, talk with the personnel over the communicator (set up in my parents room) as I am Deaf. I really do nothing, except push the button on my necklace if I need assistance. The personnel from Lifeline contacts my parents through the communicator and notifies them that my button was pressed, so they can check on me. If no one answers that machine call, they immediately start calling my emergency contact numbers in order; my mom’s cell phone is first, etc. In the case I fall and I am unresponsive, the sensor on my necklace cues in on this and Lifeline automatically sends emergency medical help. It is safe independent living.

Lifeline is unlike a regular 911 emergency contact. It doesn’t have to take a catastrophe of epic proportions for me to push my button for assistance. It can be something even as simple as accidentally breaking glassware while doing the dishes and not being able to safely step away from the glass; if Mom is outside working in her garden, how would she know I needed help? The necklace is also waterproof, so I wear it in the shower. It is only by God’s goodness and perfect timing that my parents were still at home on that Sunday morning when the first blood clot hit as I was in the shower. Because I was hyperventilating and had my left arm slung through the handle on the shower wall in order to stand up straight, the only way I could contact for help was to bang my right fist against the shower wall. At that time, I didn’t even think it was being heard. After a few solid bangs, my mom finally decided to check in on me. You can see the importance of having this in place as I continue to live independently.

Although Lifeline is often aimed in advertising for the elderly, I know for myself–and the family–wearing the necklace puts ease in the mind of constant “What if’s?” It reminds me of my times in¬†prayer. I don’t have to wait for epic catastrophes in order to present my requests to God. Prayer replaces the “What if’s?” with constant peace.

The Lord is my chosen portion and my cup;
you hold my lot.
The lines have fallen for me in pleasant places;
indeed, I have a beautiful inheritance.

Psalm 16:5-6 ESV

3 Comments

Filed under Adjusting to NF2, Family Times, Uncategorized

Light

Today was refreshing. Encouraging. Restful. (I like naps!) A time of fellowship with a friend. And sunshine.

I am not implying that the sunshine alone turned my attitude in a 180 degree motion, but waking up to its light did lift the mood as I prepared my breakfast and sat down for coffee and morning readings. Last night, I ended the day pretty much in despair. I saw little hope. I felt sick in my stomach/intestines and getting ready for bed was in pain from the pressure in my neck.

Mornings are a better time of day for me; I am a morning person, though I can totally stay up late as well. But I feel energized in the morning and this morning was no different. I still woke to the same problems I fell asleep to last night, except the pain in the neck was gone and not as much pressure on the spine. My stomach issues are just something else anyway, but I did enjoy a light breakfast.

Finishing my coffee, I read the passage in Genesis where Jacob wrestles with God. I always find this passage interesting, because we see Jacob on his way to meet his brother Esau after fleeing from him years before because he stole Esau’s birthright and the blessing from their father Isaac. So now the night before they meet, Jacob is afraid. I read the Matthew Henry Commentary for this particular passage and it was discussing how Jacob stayed behind, alone, to pray‚Ķ”wrestling” with the Lord.

And Jacob was left alone. And a man wrestled with him until the breaking of the day. When the man saw that he did not prevail against Jacob, he touched his hip socket, and Jacob’s hip was put out of joint as he wrestled with him. Then he said, ‚ÄúLet me go, for the day has broken.‚ÄĚ But Jacob said,¬†‚ÄúI will not let you go unless you bless me.‚ÄĚ And he said to him, ‚ÄúWhat is your name?‚ÄĚ And he said, ‚ÄúJacob.‚ÄĚ Then he said,¬†‚ÄúYour name shall no longer be called Jacob, but Israel,¬†for¬†you have striven with God and¬†with men, and have prevailed.‚ÄĚ Genesis 32:24-28

I can’t say that I have ever prayed fervently a whole night about my fears‚Ķto be honest, this past week, I don’t even think my prayers got past the phrase, “I can’t do this‚Ķ” Not even this morning’s prayers were very specific, but knowing that I can wrestle my inner thoughts, emotions and everything before God enables me to be vulnerable. I think of vulnerability like dependency = the sign of weakness. But it can be a source of strength–like my walker‚Ķit implies a tone of “handicap”, but it is a source of strength and stability when I walk. And today, I was able to get my walker to my car, in my car and drive to meet my friend for an afternoon coffee/chat. I don’t always need my walker or my cane as this morning, I was walking fine without them, but being independent, still needs dependent. I am finally accepting that my safety, when on my own, needs the stability.

Acceptance is rough. Although today, I found a ray of sunshine…of hope. I can live with these new changes, though I am still figuring out how, it is still difficult and I will still have melt-down days of despair, but today, light prevailed.

We ought to continue instant in prayer, always to pray and not to faint: frequency and importunity in prayer prepare us for mercy.

Wrestling believers may obtain glorious victories, and yet come off with broken bones; for when they are weak then are they strong, weak in themselves, but strong in Christ.

Matthew Henry Commentary. Biblegateway.com

4 Comments

Filed under Adjusting to NF2

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

6 Comments

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

Unshakable

The other night at dinner, we were discussing old movies. Old–as in black and white…as in Charlie Chaplin, Laurel and Hardy and the like. We grew up watching many of these kind…either that or classic reruns of black and white television shows, such as The Lone Ranger, Petticoat Junction, The Dick van Dyke Show, I Love Lucy, The Beverly Hillbillies¬†or The Andy Griffith Show. If I ever need a hearty laugh, these are bound for success!

Don Knotts, who plays Barney Fife on The Andy Griffith Show, also starred in many funny movies: The Ghost and Mr. Chicken, The Reluctant Astronaut and¬†The Shakiest Gun¬†in the West are personal favorites. In the 1968 film, The Shakiest Gun in the West, we find Jesse W. Haywood (Knotts)¬†fresh out of a dentist school in Philadelphia¬†and now pursuing the West to open an office and provide his services there.¬†One¬†hilarious¬†event¬†after another, Haywood’s vulnerability¬†places him right¬†in¬†the middle¬†of¬†a secret government case in which he has been lured into by the stagecoach robber, Penelope “Bad Penny” Cushing, who has been offered a pardon if she helps solve the case.

Haywood at the beginning of the movie is not what you would label a western man. Everything changes for him when the other wagon men see–what they perceive–as Haywood fighting off a group of Native Americans. Suddenly he is a hero. From that point on, his pride is fueled, enough even to accept a challenge from the famous and feared Arnold the Kid. It is only after this that he discovers the truth about his fighting abilities–it is not him, but has been Penny the entire time. Crushed, he returns to the plain old Jesse W. Haywood…a nobody in his eyes. I don’t want to spoil anymore of the movie, but I will say that in the end, we see that Haywood learns confidence. He has experienced the West and longed to be something big–but in the end, it is not his pride or fighting skills that earn him his recognition but simply by being himself and what he does best: being a dentist.

When my sister was here in July, we watched this movie. ūüôā I have thought of it a few times lately more because it gives me a few good laughs when I get frustrated with my hands.¬†As you may recall, my hands are weakening–curled fingers due to muscle loss¬†in the left hand and extreme numbness in the right hand which results in lack of grip and sensation. It is not entirely noticeable but my hands also shake. Not violently but just a steady jitter.

When it first started, I did not think much of it, figuring it was just a phase or I was tired that day or anything else excuse-wise that came to mind. When changes happen in my body, I allow myself a certain period of time to test and take note if it is indeed a change or just a spontaneous reaction of tumors with the nerves. Sometimes things happen only once,¬†never occurring again. Unless it is crucial–like my notice of hearing loss–I don’t mention anything to my parents or doctors until it becomes a relevant occurrence.

One night, my sister came home and as we were talking she just broke in midsentence and asked, “Are you feeling ok? Your hands are really shaky.” I had not mentioned it to anyone yet…guess it was time to say something. That was early summer. As the summer months progressed, so did the shake. Sometimes my left thumb will spasm. It does not hurt; I just have no control over its movement.

I really don’t notice the shakiness¬†until it is obvious: when I eat, when I write or as I observed last night..when I paint in detail. I was finishing my last two paintings for Saturday’s festival (exciting ūüôā ), but on the one I was elaborating¬†with flowers and side margin d√©cor. My shakiness started to frustrate me as my marginal fancywork continued to expand farther and wider than what I wanted, topping it of with my right hand smearing the metallic¬†red paint amidst the baby blue background.

– – –

This past weekend, there had been (and will¬†be) a lot of conversation about the days ahead and my health. Since my body continues to change, we are moving forward to get the help and resources set up in advance so when life gets more shaky, we have some stability. It was a rough weekend emotionally. As if shaking in fear of¬†losing¬†“independence,” I was reminded that¬†receiving this help will¬†in¬†return¬†help me¬†to¬†continue to live as independently as possible. There are resources and services¬†that we are not familiar with…this is a whole new chapter¬†in life.

It doesn’t come naturally for me to admit that I need the help, but it is then that I am graciously humbled.¬†I had to set aside my pride to see the goodness in this situation.¬†I see¬†a parallelism¬†to my prayers as well. I have been¬†contemplating what it means¬†to “ask, seek,¬†knock”¬†(Matthew 7:7). Three action verbs…why are they so difficult to act upon? And yet I can come before God at any time, not with¬†shaking or trembling, but with¬†confidence.

Let us then with confidence draw near to the throne of grace, that we may receive mercy and find grace to help in time of need…[and]¬†let us be grateful for receiving a kingdom that cannot be shaken.

Hebrews 4:16, 12:28a

6 Comments

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

Update!!

Hello everyone.

I would like to take a few minutes to update you on my health. My last MRI and appointments brought up a few questions that my doctor felt needed to be address further by a few specialists: 1) the pain in my right hand due to the tumors growing in the palm on the pinky finger side and 2) my vision as I was (had been at that time) seeing colors frequently during the day. Of course we all see colors, but this was like going from being outdoors in the snow on a sunny day with no sunglasses on¬†to going indoors–that funny green color when your eyes are trying to adjust back to the dimmer light. That is the best I could explain it, but they knew what I was talking about. So appointments¬†were set on November 1st to see a doctor on the Pain Management team (for my hands) and a neuro ophthalmologist about my eyes.

The doctor concerning the pain was very nice. He reminded me of Mister Rogers. ūüôā He listened to all my pain problems and the conclusion came to that there is not much that can be done about the tumors in the hand, except keeping the pain down so that way I can still use my hand as normally as possible without cringing in fear of huge pain every time I go to open a door or pull out a chair or squeeze my shampoo bottles. I¬†have already been on a pain medicine for a while now to help with the pain spasms, but I was given another prescription for a different pain medicine to help with these new different pains. The plan is to see how well this new medicine works on helping my pain (I mean it won’t all go away, but if it keeps it down so I can function that is good) and see how tired it makes me (I also don’t want to be a walking zombie. Been there before, not fun!) Next time I have doctor appointments, if I am not satisfied then there are two other pain medicines to try. So that is all very hopeful. ūüôā

At my eye appointment, there were several things that we discussed. For one, my eyes were extremely dry and scratched. So I started eye drops to help with that. ūüôā And two, after they dilated my eyes, they found that my optic nerves were¬†swollen. So, considering my case, the doctor said it is a possible many things, but most important: there is extra fluid in my brain and something is putting pressure on my optic nerves. Then it all gets complicated from there…you don’t know what tumor(s) are pressing on the optic nerve–it could be from the any tumors in the brain or if it could be from the tumor in the spine at the C-3 to C-7 area that is causing pressure and maybe blocking the fluid flow…many different causes. The most important thing was to get the excess fluid out so my optic nerves go back to normal and thus, I stop seeing excess floating colors throughout the day.

I started this medicine that helps soak up the extra fluid in the brain. I already notice a big difference! My eyes are doing much better! I have not seen much color since I started it–only one or¬†two times compared to seeing it everyday all day long like¬†before.¬†The main side affects of this medicine is that it would effect the way carbonated drinks taste…they would taste more metallic. I totally forgot that at lunch last week¬†and pulled out a Cherry 7Up to go with my lunch. I¬†took¬†a¬†sip and about spit it out. I was like “Ugh this is so nasty! Tastes like metal!!!”¬†LOL.¬†I had to throw it down the sink and drank chocolate milk instead. Not drinking any carbonated drinks for a while is not that bad for my diet anyway, so no harm done. ūüôā I go back December 5th for an eye check-up.

And lastly, something that has come up that I have not discussed fully yet with doctors, but I am having much tenseness and pain in my neck and shoulder areas of my back. I think it is due to the extra pressure on the spine from the tumor that had more fluid shown in the last MRI. The new pain medicine has been helping relieve some of that pain. I have to watch my posture as I have been bending more like a person with osteoporosis with my neck strained out as standing up straight causes pain. My parents and I sat down and got a few things from different websites to help with different issues I am struggling with in maintaining independence.¬†All these things are¬†for people who live with chronic pain and weakness. Mom found a rice pad jacket, and it has been so helpful. All I had before was a little 4×6 size pad that I used. The jacket helps release some pain and tenseness in my shoulders.¬†It is comforting.¬†We found some silverware to help me for when I have to cut things, as gripping silverware now really hurts my right hand. Dad helped me find soap dispensers that I can use for my shampoo/conditioner when I shower. We found a device that helps me open my gas tank (right now I use a pair of pliers), a device to help me squeeze my eye drop bottle so I can put my own eye drops in, and I found big pens to write with at the Dollar Tree. All these things out there and available to help maintain independence and I never realized it.

I told my mom the other morning that I felt this time with these changes in my body, we did something about it. Not like we didn’t before, but this time, we took action to find ways to help get around the obstacles. And it was exciting. ūüôā And just the thought to know that I am not alone in this. I may be one of few that has NF2 but there are so many different factors and diseases that lead to the same side effects or weaknesses. Someone has been down this road before me, because these things are available for my use. That is such a blessing. My ten years are coming up in just a few days–ten years ago when I first found out the news that I had NF2. And I thought I was going to die. Now I see, God has only made me so much stronger by His strength. I really can’t explain what I am feeling right now about it–I’ll let you know in a few days. ūüôā

~

2 Comments

Filed under Adjusting to NF2, Hospital Trips