Category Archives: Hospital Trips


It all started Tuesday night a month ago, when I bumped my leg getting out of the shower, in which caused a deep gash on my left shin. A little background information might help explain the situation: It wasn’t my first time hitting my leg on the bathtub sides. In fact, both shins were already portraying an array of nicely blended shades of black and blue that had already been there for some time, due to the longer healing process in taking blood thinner pills. Add the delicacy of the skin, due to long-term use of steroids and complete numbness in the left leg, often I don’t know where most of my bruises come from–except the ones on the front shins.

I often think that I am un-observant. Or maybe things get so routine that it just doesn’t phase the mind that something is different. Such is the case on that day when I was exiting the bathtub. My bathtub already has higher-than-normal siding, not making it as an excuse, but my legs just can’t quite ever make it over the hurdles of a bathtub without contact, unless I am making a “leap in the air” look…which I am sure looks different in my mind than real life. I never ran track. Or hurdles.

My leg that day hit the rim, but I didn’t notice…actually, because it hit the heaviest portion of the bruises, I can’t even remember feeling it. It wasn’t until I noted scarlet red all over my new bathmat that I realized I had been wounded. Good thing I hadn’t ventured off the bathmat yet. I couldn’t reach the ever-present band-aid supply in my counter drawers by the sink, so I made myself presentable for assistance and then pushed my Lifeline button.

After several boxes of large band aids and keeping the wound as cleaned and protected as possible, it still was not healing properly. When I went to Children’s last week, doctors looked at the wound and my ankle as a redness and swelling of the skin under the actual gash had started. We set an appointment to see the Wound Team on September 9th, went to Cleveland for the weekend and started the new week. Then came Tuesday evening.

It hadn’t been until Tuesday that the redness and lower swelled ankle really started to hurt. That evening as Dad was helping me, he was carefully wiping the area with a warm washcloth before applying the new band-aid on the actual wound; it felt like pins and needles!! The next day was no better and by Thursday morning, Mom called my Nurse Practitioner at Children’s. I was just ending my early morning Skype chat with my friend when Mom comes in with a note saying that Children’s wanted me to their ER as soon as we could get there–more along the hopefulness that we could figure out the leg problem and still get me to my CEI appointment by 2:30. Like a two-in-one day. It’s not possible.

Already being set to go for the day, I just quickly put on my shoes, grab the rest of my half-eaten apple and a Fiber One streusel bar while Mom fills my Tervis with my morning coffee. Off we go. At the ER, we get into a room…do some waiting, watch an episode of Bonanza, talk with a few different doctors, more waiting and I fall asleep in my chair. Mom had already called CEI and explained the situation, and they kindly rescheduled my appointment to the following day (yesterday.)

It is in these situations that you learn patience; after much waiting, I got the ultrasound done one my left leg to ensure there was no blood clot problems. The good news is that there is no blood clot problems! 🙂 What the results show is that it is Cellulitis. It’s a skin infection. Germs, even the tiniest, enter through the wound and start to spread as an infection: infested…seems so gross. It’s not like I wasn’t keeping my hygiene or things like this, it just happened. But getting the proper antibiotics now will, in hopes, keep it from continuing to spread. It can get into the blood stream or the bones and that is something not wanted or needed at the moment!

Please pray this infection heals enough by next week, as timing of the eye surgery is mostly dependent on this…


Filed under Adjusting to NF2, Hospital Trips, Uncategorized

In a few words…

Normally, I like to give my MRI results in a full detailed account. However,in thinking of last week, the past few weeks, the past few months of complexity–I just want to tell you simple. In a few words…

My parents told me the results before my eye appointment, because I would be seeing my neuro-ophthalmologist and would need to discuss my questions and tell of my changes in the right eye vision. I suppose too, my parents wanted to tell me themselves and not have it come to me as a shock or surprise. It didn’t. “I saw this coming,” I told them. And even though it didn’t make it any easier, the fact that I knew in gut-feeling that my scans would reveal something, somehow made it easier to comprehend.

“There’s good news and bad news,” Dad begins. The good news: MRI of the spine showed stable. That is good news; although I have had more weakness in my legs, I probably would have been shocked if there was growth, because the lower half of my body (besides intense bruising on the legs from bumping into things) has not been a problem.

The bad news is that most of the tumors (besides the ones on the acoustic nerves, which wouldn’t matter to me since I am deaf already anyway) have grown…some significantly, some in areas by the skull that are likely causing pressure and the effects seen in my curling right hand, weaker left hand and numbness in the face/neck area adding to the choking, chewing and voice changes too.

These changes are slower, more “normal” to me to adapt to in everyday as compared to the right eye vision. The scans showed that there is a tumor growing next to the right optic nerve. “I am trying to see God’s goodness in all this,” I type to my best friend. At the time, I didn’t see it, but now I catch a glimpse…the fact that the tumor is next to the nerve and not on the nerve, is goodness.

This is what has been causing the grey veil and blind spots in the right eye. I don’t know much about eyes–I truly regret not taking Anatomy in high school or college, but there’s nothing I can do about that now; so I learn from my physical woes. I was told that your optic nerve is protected by a sheath, in which my right sheath is very swollen (thus pressure on the nerve.) I meet a surgeon on Thursday to discuss the surgery to release that pressure in hopes it helps the vision.

That is my last and only option. For the remaining tumors, I have no treatment options. “Your tumors will continue to grow,” my doctor tells me. We have had the discussion several times and I know that he and the rest of the team of my physicians feel helpless in the situation. He expresses his concerns on my current physical state and then asks, “What can we do to help, for you and your family?” Minutes before, I had just been in a state of tears and floods of emotions. Without a moment’s hesitation, I reply, “Well, you can start by getting me a limo and a personal chauffeur. That would help my Mom.” It made for good laughs; it released pressure.

I have not been abandoned though–I do have one more option: “Do you trust Me?” As I sat at the kitchen table that night with my parents, I started asking my questions as if I had already gone blind. My biggest was communication: I’m already deaf and couldn’t learn braille with my hands being so numb–was what I reasoned. How will we do this? Dad gets up and comes to my chair, gives me a bug hug and says, “Like this.”

It’s the picture of trust…”Do you trust Me?” Because in good news or bad news, God holds me.

Hold me Jesus ’cause I’m shaking like a leaf

You have been King of my glory

Won’t You  be my Prince of Peace

~Rich Mullins


Filed under Adjusting to NF2, Hospital Trips, Uncategorized

Secret Codes

When we were little, my sisters and I played “Spy.” If you have never been associated with this game, allow me to explain. It all begins with a sheet of wide-ruled paper and a wooden No. 2 pencil that was usually used for math class, hence, it lacks the eraser. After spending half of your spy time by creating a detailed floor plan of the downstairs areas, especially the kitchen, the game has now begun.

It’s a parallel to hide-and-seek with follow-the-leader. The objective is to pinpoint the non-playing family members and spy on them without being seen or heard. Melissa, being the eldest and cunning, always seemed to end the spying eye on her at first notice; Mom just played along, even when we giggled or accidentally moved the table chairs while trying to knee past them on the tile floor. It was the era of Carmen Sandiego and our games of Spy just happened to help us solve our curiosity mysteries.

Fast forward to junior high days–it was in these days that I learned two fundamental traits that would guide me as I started losing my hearing in the end of eighth grade: sign language and lip-reading. I first learned sign language from Melissa my sixth grade year, as she had learned a song at summer camp. That next summer meant that I was old enough to attend church camp as well, but I did not take the signing class–my friends did, however, and that year I learned, “I Can Only Imagine.” My junior year of high school, I took a community ASL class with my Dad; I had been self-teaching myself from a few signing books I purchased at the local college, but the course helped increase my vocabulary.

Until my lip-reading rehabilitation course during my first rounds of radiation in 2002, I never realized how much I was already reading. I sometimes get asked when I first started, and I honestly don’t know. I do remember once getting a talk from Mom after getting into trouble, in which I read her lips…but I always thought that may have resulted from a guilty conscience rather than hearing loss. 🙂

We may have no longer played our games of Spy, but we sisters developed in the junior high years a code. A secret code, and we would relay this message to each other in our times of need: SPR!! Yes, these three letters were part of the foundation to my lip-reading career. Best part was that we could say them to each other from across the dining room table or Sunday School room. The message was simple, so loud and clear: Secret Private Room. It usually was the closet, but some of our best secrets and cases solved were a result of the SPR!

Fast forward to the present day: I no longer play Spy or hold SPR meetings in my closet, but I do enjoy the game of CLUE. My college roommate and friend from Denver days surprised me with a visit on the weekend of the art show! Considering my past history in solving mysteries, one would think I would have not been so confused at the situation, when Callista taps my shoulder and I look up to see her smiley face. I was at the kitchen table reading, so I had my glasses off; Mom had just been discussing the new neighbors, resulting in my next sentence understanding of who I portray Callista to be in my mind: “You look like my roommate from college.” The lip-reading, because in my mind I know it is Calista, but I think it’s the new neighbor–it just threw me off completely.

“Hold on a sec and let me get my glasses on,” thinking of how I don’t like new introductions as I am terrible at names. I turn back around, see Kate and glance back at Callista. “What are you doing here?” It finally settles in–yes, these are my friends and they came to see me. 🙂 Later that night, we played CLUE. My hand of cards was not the greatest. I had all characters and two rooms, no weapon options. We play a few rounds and I had two characters left–still no weapons marked and only one room (besides my own) marked off the choices. Deciding to subject my own character to checks and balances, I place him in the nearest room and random grab a choice weapon.

“I think it is Mr. Plumb, in the kitchen with a candlestick.” Kate had no cards, Callista had no cards; they look at me like I am pure genius. “It was just a guess,” I had to assure them. Back came the conversations of Carmen Sandiego and I mentioned the show Sue Thomas, F.B.I.–inspired by the true story of Sue Thomas, who solved crimes by lip-reading: a deaf F.B.I. agent.

I must have been inspired by all these memories when it came to Monday’s MRI. Being an older, complicated body patient, my scans usually get scheduled for the last of the day. Monday was no exception. I was to report by 5pm for the preparations (which is translated as paperwork and questions); the scans starting at 5:30. I am comfortable with the long scans–usually they are my nap time when scheduled for earlier in the day. With this scan scheduled late, I knew if I napped, I would not sleep when I got home. Selecting my movie, I toyed with the Lord of the Rings, but once I start one–I must watch them ALL. To escape this, I selected Star Wars V: The Empire Strikes Back.

They get me settled in with the head-gear, strap my arms in, blanket and knee lifter; I am all ready for the scan and movie, although the goggles pressed hard into my nose. The opening overture and text starts–I find that looking at the screen with my left eye is actually blurred. So I allow that eye a break, close it, and view the movie from my right…aside from color differences, I saw things pretty normal considering its condition.

We’re still the beginning parts of the movie: Rebel forces are fighting the Empire on the ice planet Hoth and aside from that action, there are a few scenes with Darth Vader and his top commanders on his spaceship. It was right at the moment when the light, snowy planet Hoth gets cut off to the scene of the darkness of the spaceship that I am thinking I am seeing a secret code! You’ve heard of it before–movies will flash messages to the audience: “Buy popcorn.” Or something to that extent.

As the camera zooms in on the outer of the spaceship, I am seeing words, in what I think is the little lights from the inner of the spaceship. All excited, I start squinting to decipher the code, thinking, “Wow. My right eye problems give me a chance to see things different!” I start to see it is in sentences:

“This movie is 2 and a half hours long….” It goes on to tell me that it is not good for my eyes and that I should shut it off and sleep. But just in case I still wanted to view the movie,”Press [*].” So much for codes-Luke hadn’t even gone to Dagobah to find Yoda yet and it wants me to sleep! Thinking that my eye had recently gained some sort of cool lens power made me laugh.

In life, there are secrets and mysteries. Some will be revealed, some will not. Instead of solving them, I am learning to live in them.

Call to me and I will answer you, and will tell you great and hidden things that you have not known.

Jeremiah 33:3


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

I’m Confused

If you and I were sitting at a table, just talking about life and letting conversation flow, I would hope like any other normal conversation, there would be transition sentences to help me follow the train of thoughts of topics at hand. Maybe there is too much of a writer’s dream in that thought. But maybe that is my problem–I read too deeply into things; and my lip-reading often leaves my decoding of transitional phrases not what the transition is even off sometime that my Dad signed to me (after patiently trying to help me understand), ” I’m changing the subject.”

“So, we’re not talking about writing letters anymore?”


Such clarity, simple change. After yesterday…I could have used a little clarity, because what I have been living with over the past two or so months is anything but simple change. My Life with NF2 is appropriately labeled more as, My Life is so Confused.

As you know, my summer started with the increasing cataract hazy blur. Add the grey veil in the right eye, correction surgery on the left eye, endless eye drops, full and well recovery for the left eye while the right eye worsens…it has reached a point where I feel more blind with my glasses on than off; and I am already as blind as a bat anyway. Except even bats are better in knowing their surroundings–they see as a result of high pitch sound waves and the echo replies. High pitch frequencies were the first part of my hearing to diminish. So, me: no hearing (which really is not all that unbearable)–but it only becomes totally unbearable when you cannot see or when you see double, all in which is now me.

I would venture to say that 98% of this perpetual blindness is the current swollen right optic nerve. My MRI is on Monday, ophthalmologist appointment on Wednesday and Children’s Hospital on Thursday; next week is going to be a long week. But I have questions and ready for more answers, regardless of what the scans show. When I have my glasses off, my left eye does the controlling, though I try to refrain from zoning my right eye out entirely and keep it functioning straight ahead. Most often though, when I lip-read, write or even type…my right eye acts like a lazy eye. It is becoming a bad habit.

In preparing for the art show, I even painted in this fashion:  one eye and one hand. No glasses.




When we were setting the dates for my eye appointments in May, I specifically selected at the time (for what I understood) as my last appointment, post-surgery to be after the Art on the Lawn Festival. Summer in all fullness and yet eyes worsening, I was not only counting to the art show, but to yesterday where I had the understanding from earlier on  that I would be tested in the left eye for the new glasses lens to match my new eye lens they placed at surgery. I felt that would solve some of the bur problem when needing my glasses on…I can’t go everywhere without them; Although I do most often when at home, once even going down the stairs as it made the dizzy blur decrease.

These little but big changes–I was in anticipation! Instead, I left the clinic..with a dilated left eye and grey veil in the other…in my now confused mind, I had wasted a day just waiting (literally, almost five hours)–for nothing. I was so frustrated, angry, confused, not to mention hungry, and crying so hard, Mom pulled over on the highway to give me some clarity. I still don’t understand why my surgeon wants me to wait another 2-3 months, have another check and then get my new prescription if the eye is good even now. I don’t think I will make it that long! I am still confused.

But I am also wondering what next week will hold. And I often want to ask God for clarity in this mass of confusion I call a body. Not really a prayer, not really a demand…a simple question: What are you doing? And it’s a question that only faith can clarify.


















Filed under Adjusting to NF2, Family Times, Hospital Trips

Double Check

For the fourth time in the past two weeks, Mom and I headed down to the CEI center at Blue Ash (Cincinnati suburb). On the way home today, I think the view and drive was starting to get strenuous and well, boring. To lighten the mood, I suggested the next time we travel down, we play a game–“Like, guess what book I am thinking of!” It definitely lightened the mood. 🙂

Last week, it was the left eye cataract correction on Tuesday, with an immediate follow-up appointment on Wednesday morning. My last left eye check was this past Tuesday, in which the doctor told me that the eye looked really good! To hear this and see that my sight is clear made the day! (I am not certain, but I feel I did better too in reading the letters on the wall.) 🙂

I was born with a lazy left eye. Being a baby, I don’t remember anything, but it seems from stories that up until my eye correction surgery (around 11 months old), I didn’t see clearly. After my surgery, Mom took me outside and I touched every leaf in sight; almost as if there was a whole new world to explore…waiting just for me.

Then came glasses: After my few years of cute, red, circled lenses, I started a new school with new frames. It was not the fact that I was a new student that made me popular; It was the patch that I was required to wear over my right eye, so that my left strengthened. I’m not sure if it worked…when I am tired, my left eye drifts–pictures are evidence. Regardless, every year growing up I would have to take an eye test. Until the seventh grade, when lenses actually could be strong enough in prescriptions for my basic near-sighted blindness, it looked as if I wore goggles. Being about the only kid in elementary school with such spectacles, my peers would ask if they could try them on. “Be very careful,” I would say as I watched them just about fall over when their perfect vision met my blindness.

My eyes reached a plateau around high school, and I only had eye tests so that they could monitor my optic nerves through visual field tests. New glasses frames for college days, and I didn’t have an eye test again until I moved here. All was well until the first time the optic nerves started swelling in 2012. My right eye has been my strong eye. Almost perfect vision, it has carried the weight of both eyes for years. Just like my two blood clots, though in the same leg and same area, the side effects were so vastly different that I didn’t recognize the second clot as a clot. This is exactly the same situation for the nerve swelling. My first experience was a solid black dot in the right eye that would follow my every move. This time, it is the grey “veil” appearance that has changed over the past few weeks since doubling the eye medicine.

Seeming that the “veil” was worsening…there are days when I almost cannot do anything without refocusing my eye or it is as if I am seeing through an appearance like looking out the window through a shade or blinds…at my Tuesday appointment, they scheduled me for a regular visit with my ophthalmologist. After talking all my woes–there are many other observations–he checked my optic nerves and reported that the right nerve was just a bit smaller. Why the nerve is smaller yet then side effects more often and in a larger circumference of the right vision? I am not sure. The good news is that the nerve is not larger! The plan in sight for now is to remain on the twice a day, doubled dose optic nerve medicine, rechecking with a visual field test in late August.

Last night, I woke around 2am…just drifting back to sleep, I started mumbling sorts of prayer requests that came to mind. Then I remember saying, “I don’t want to be blind…” I don’t remember anything after that.

Faith is like being blind; it is like when my eyes are unable to focus in the sunlight and my walker becomes wabbly–and when I am about to stumble, a strong grip from a family or friend holds me in place, Faith holds me in that place…where there is still hope.

“Hope In Sight” by Out of the Grey
(2nd verse) Peace, when it goes
Oh, it leaves me with just one hope
No matter how near or how far
Your light is the brightest star
There is hope at both ends of the telescope tonight

Chorus: There’s hope in sight, hope in sight
If seeing is believing, then call me a believer
Hope in sight, there’s hope in sight
Now that I can see You through the eyes, the eyes of faith


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

Greater Expectations

If, by chance, my high school English teacher reads this particular blog entry, I feel inclined to start with a sincere note of appreciation to her outstanding tutelage in the area of classic literature. It was in her class that I first discovered (for as smart as I claimed fame to be), I was clueless when it came to Shakespeare; appalled at the darkness of Edgar Alan Poe’s works; wanted justice after reading George Orwell’s Animal Farm; and thought there was no greater written soap opera than that of F. Scott Fitzgerald’s The Great Gatsby. We encountered The Grapes of Wrath, sections of The Canterbury Tales, and most of all, works of the highly esteemed, Charles Dickens.

I like to give any read I pick up a decent try. There are the books that are enjoyable (say 3 of 5 stars); books that are worth discussing and sharing the title along to your friends (say 4 of 5 stars); and books that are all of the previous, plus the fact that you instantly want to reread the book, it is always in thought someway during the day and you take part of the action of plot while dreaming at night. Yes, a true 5 of 5 read can affect one in this manner (true story!) Sad to report, a devastating read can trigger the opposite of all joyous 5 of 5 characteristics single-handedly. For me, that took place my freshman year of high school. The novel: Great Expectations by Charles Dickens. Maybe it is because Dickens already happened to be a favorite author of mine at the time, that I expected to enjoy the novel as I had A Tale of Two Cities. (Of course, growing up, nothing was considered more classic and traditional in our house at Christmas than A Christmas Carol, especially if Jim Henson Muppets were involved. 🙂 ) Although my English teacher lectured and presented the novel with great enthusiasm, Great Expectations is placed on my “Abandoned: never-to-read-again” shelf in my mental library.

The more I think of expectations, the more funny it seems. We cling to expectations…they are the wins and losses. We run back and forth between the two–expectations must be balanced between the positive and the negative, much like a teeter-totter. When you have no expectations, you can find yourself thrust into a situation where you are inclined to making expectations on a whim. And for me, I did just that very thing yesterday after my cataract correction surgery on my left eye.

Eye surgery is strange; it is vastly different than other surgeries I have encountered. At one point in time, though highly on my anesthesia about ready to be wheeled in the surgery room, I remember thinking, “How am I going to blog about this?” 🙂 The preparation meant loads of different eye drops, getting my IV in place and vitals completed. Towards the last few minutes, the nurse squirted in the final eye drops and I was told to close my eyes. When she left the room, she shut off the lights. I fell asleep.

It was a great sleep…like the deep slumber you enjoy between smacking the snooze button vicariously on your alarm clock in the morning. I had no snooze button, but was quickly awakened when the nurses came back in the room and turned on the lights. Momentarily blinded by brightness, I read Mom’s “I love you” signed hand and they start wheeling me out in the hall. Now, I get confused easily, especially when it comes to reading lips dealing with medical things through eyes such as mine (that is my excuse…truth is I just miss a lot and find out about it later.) A few examples: I thought the surgery would take long (my expectation), but it really was only about twenty minutes. I also knew in my head that I was not going to be put to sleep, but got confused when they put the tubes up my nose (Mom told me later that it was oxygen.)

This all started to make better sense when she told me this, because on the drive home I started talking about the fact that I was “asleep” yet saw the light and things moving around my eye. The light was so bright that up until I left the hospital everything in that eye was orange. 🙂 We were given the instructions for the continuing eye drops at home and they covered my left glasses lens so my eye would not be strained for the day.

I had greater expectations for recovery in terms of time. I expected fast; indeed, the initial results are fast! Immediately after surgery, though temporarily orange, I could see clearly. No more cataract, no more haze! 🙂 But I also learned full recovery takes time. July has just begun. Among everything else in schedule, I have the entire month filled with eye drops three times a day and letting my eye adjust before I can go to a regular eye doctor for a new prescription of a glasses lens for the left eye. My expectations–frustrated!!!, but I can bring it back to balance–as always–by offering praise and thanksgiving, for the ability to see and the blessings from those around me who are the helping hands in my recovery.


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

For when I will see clearly, again…

Not even a month had passed since I last saw the surgeon ophthalmologist regarding my cataracts. It was during that middle portion of May that the first correction surgery for the left eye was scheduled for July 1st. It seemed as such a long wait! And yet here we are..the surgery proceeding as planned–next week.

By now, it shouldn’t be a surprise (much) when I next mention that during the past month, my right eye has changed. Like any other change, it started slowly. The cataracts have already effected my vision as far as the blurry haze off-setting my balance and deepening the light sensitivity issue. I have struggled with light in darkness situations regarding the left eye (born with a lazy eye) since we moved here; I had made the decision to stop evening driving shortly after the move. My left eye just could not handle the passing car lights anymore. It was different in Denver: cities know no darkness.

If you recall, I have–at one point in time shortly too after the move–had swelling on the optic nerves, resulting in seeing black spots. As it progressed to larger dots, I saw the ophthalmologist–who presently still is my eye doctor–and he prescribed the medicine that causes carbonated drinks to taste metallic. Not complaining, because as of the past two years, the medicine has helped keep the optic nerves stable. (On a side note: unlike other individuals with NF2, I do not have tumors on my optic nerves.)

What then causes the optic nerves to swell? “Tumors,” would come a reply. Although it’s almost like a trick question, because there is no definite cause tumor in sight (at least for me, since I have no tumors on the optic nerves growing with obviousness alarm.)  My body contains many, many, many tumors…we don’t even know how many to be exact. With many tumors growing at the same time, it is difficult to know which tumor causes what side effect. Even when tumors on the MRI scans show “no growth,” but I have increasing side effects (numbness, intestine problems, weakness in balance and strength), we still don’t exactly know what tumor is causing the problem.

When my right eye started changing about a month ago, different to that of the cataract haze, I didn’t think it to be an optic nerve problem. It started here and there, an intense darker fuzz in the eye when it caught a time of light sensitivity causing me to have to pause longer to re-adjust my eye. It only lasted a few seconds at first, but I still got to saying, “Hold on…eyes adjusting!”–so that way the person I was talking to understood that I was no longer lip-reading, but squint focusing back to normal sight.

After the trip to Colorado, the problem started increasing more times a day and I noticed that instead of seeing the typical cataract haze, I was now seeing a tad darker tint of everything. Trying to explain this situation, Mom suggests: “Like a veil?” Mom is so good with words. “Yes! Like a veil!” It still is the hardest situation to explain, but it is not very difficult to explain when you experience seeing in “tunnel vision.” And that is when Mom called the ophthalmologist office at the surgical CEI center where they set up an appointment last week in order to see what is going on with my eyes, based off my rambling adjective descriptions of side effects.

Without even dilating my eyes, the ophthalmologist on the emergency appointment floor noted that the optic nerve on the right eye is more swollen. I don’t understand how they “measure” the growth, but he mentioned that (after taking the density) it had gone from a “2” to around a “3 or 4.” All I know is that this means it grew. The doctor asked if I had any questions–which I didn’t–and as we left, the office there set an appointment for the following day with my main ophthalmologist. Bright and early the next morning, Mom and I headed back to Cincinnati.

I ended up taking another visual field test, even though I had just been in April for an appointment. The hardest part of the test is holding the clicker; I ended in holding it in my hands much like a tiny game boy remote, but grasping the cord with my right hand so I wouldn’t drop it. 🙂 Considering the eye condition, I was a bit shocked when the visual fields showed smaller-than-expected change. The outer and upper rims are areas where changes occurred in both eyes, but the inner middle to bottom portion of my right eye is where you see the most growth of blackness on the chart.

I did have a few questions for my doctor, and then we discussed the next steps. As of right now, he doubled my eye medicine dose per day. Change may occur slowly–so it is hoped that by my follow-up appointment on August 20th that there will have been positive changes and stable optic nerves. I do have one other option for helping release the pressure on the nerve, but it is a small surgery on the outer lining of the nerve; and even though the nerve is not touched, I am preferring no surgery.

This past month…especially past two weeks..has been a test of patience. I get frustrated with my eyes. “I can’t see!!!!” It is becoming my new “Good grief” slogan; but the truth is that I can see…just not how it used to be. And until the day when my sight returns to its former self, I just have to keep focusing on the Lord. I can’t deny that fearful thoughts of blindness has already crossed my mind, but focusing on them causes me to see life through tunnel vision. Eyes of faith oust the darkness and shines the light of hope in its place.

God, my God, I cry out:
Your beloved needs You now
God, be near; calm my fear
And take my doubt

Your kindness is what pulls me up
Your love is all that draws me in

I will lift my eyes to the Maker
Of the mountains I can’t climb
I will lift my eyes to the Calmer
Of the oceans raging wild
I will lift my eyes to the Healer
Of the hurt I hold inside
I will lift my eyes, lift my eyes to You

I Will Lift My Eyes.” Bebo Norman. Between the Dreaming and the Coming True. 2006.

1 Comment

Filed under Adjusting to NF2, Hospital Trips, Uncategorized

Seeing Ahead

Last week I saw the surgeon ophthalmologist for the cataracts in my eyes. After a whole day (literally) of sitting in the waiting area or the exam rooms, I left the hospital with extremely tired eyes. Cataracts plus dilated eye drops does not equal a good equation. 🙂

I haven’t had an eye exam in close to two and a half years. When I see my regular ophthalmologist every four months, it is only a visual field test and a quick shining of bright lights in the eyes as he checks the optic nerves for signs of swelling. No dilating, no tests where they set lenses and click back and forth–in which you say whether “one” or “two” is the clearer option. Simple and fast.

That being said, this eye appointment was interesting. Not only were my eyes so dilated (you could hardly see the color of my eyes), but also the bright lights in the eyes were making lip-reading a colorful experience. Everywhere I looked seemed to be a mesh of sea-green and magenta. I also realized that taking the option “one” or “two” test, I needed assistance; if I was viewing the letters on the wall with Star Wars looking vision specs, how was I to know which number was with which lens? I solved the problem by explaining that Mom should stand next to me–when the nurse flipped the lens, she would say the number. Mom would then tap my hand either once or twice and I would say which option was best. It was like a signing interpretation in the dark!

When my optic nerves were swollen and I was seeing black spots in my vision, I started a medication to help keep the swelling stable. Even last spring when the MRI showed growth in 80% of the brain tumors, my vision was not affected and I am very thankful. Although, currently, I am not seeing black spots, seeing through a fogged lens is starting to annoy me. I am out of focus. A least at home I can squint; I was told not to squint when taking the “read the letters as far down as you can” test. Squint focusing was cheating. 🙂

The past few days, has been difficult. It is testing my patience. I left the hospital with a surgery date: my left eye will be corrected July 1st. It seems so long…the thoughts, “Can’t it just be fixed right now?’ come to mind. Maybe more so, because of all my health problems, this is one that can be fixed…it’s temporary, anything else I experience is a permanent loss.

This morning, the story of Jesus healing a blind man came to mind (Mark 8:22-26.) When Jesus first laid his hands on the man’s eyes, the man could see–but it was not clear: “I see people, but they look like trees walking,” (24.) It was only after Jesus laid his hands on the man’s eyes for a second time that the man’s vision was fully healed. I wondered what the blind man may have been thinking after the first time Jesus laid his hands on his eyes, or even the disciples who were also present. It is not important, but the story does show a testing of faith.

The answers to our sufferings may not come rushing in all at once; in fact, it is rare if they do. What I see ahead may appear hazed and out of focus, but it is temporary–one day Faith will be Sight.

Now we see things imperfectly, like puzzling reflections in a mirror, but then we will see everything with perfect clarity. All that I know now is partial and incomplete, but then I will know everything completely, just as God now knows me completely.

I Corinthians 13:12, NLT


Filed under Adjusting to NF2, Hospital Trips, Uncategorized

Eye Appointment Findings

Today, Mom and I went to Cincinnati for my ophthalmologist appointment. I was super excited this past November at my last check up that I could extend my next appointment from 4 months to 6 months, as my optic nerves had been very stable and doing well. Three months later, the end of February, I started noticing blurred vision in the farthest corner of my left peripheral vision; random days of blurriness in my vision began in both eyes by mid-March; by the first of April it was consistent.

Considering the extent of my disease, this probably is not the best way to go about living everyday, if and when, I am feeling or “seeing” new changes. But oftentimes, I give the changes a fair chance to prove they are significant changes before I mention anything, because some changes are not worth a huge fuss over. However, if I feel the changes are a major issue or I am concerned right at the start, I will talk to my parents and make them aware. Just depends.

In this case, I only mentioned something about my left peripheral vision when I announced my driving decision. At that point in time, I did not think the hazy blur would change and would just show, at most, as more blind spot on my visual field test in May. But when the blurred haze started becoming more frequent, I also noticed it was affecting the ways my eyes react to light and focusing–ultimately, balance and lip-reading as well.

By now, I am not sure if I had so much mentioned the problem to my parents, but I know I did a bit of gripping about my vision frustrations–and besides that, I would take off my glasses to read, as I can’t focus fully without major squinting when wearing them. First time Dad saw me in this manner, he sort of gave me that shock look (“What are you doing?”)…”I read better without my glasses on,” I tell him. Reading without my glasses or else squinting profusely are now a pretty normal sight to see.

My parents are notorious at knowing my disease (a whole lot better than myself, how ironic) and when I finally explained my eye problems in full-length, analogical descriptions, several possibilities were discussed: maybe I just needed new glasses or bifocals; it could be my optic nerves, but it didn’t seem to quite fit as I have had that experience previously; or it could be cataracts, as long-term use of the steroids can cause an increase in this area. Keeping all these in mind, I wrote my blog update very vague, because even details to me were not worth trying to figure out on my own–leads to worry anyway.

And so today, we learned a few things: 1) By the way I was holding my punch button while taking the visual field tests, it was proof that I did not grow up playing Mario Brothers. And I mentioned this to the lab technician as we started the right eye test for a second time, (haha).  2) My visual field tests and optic nerves are actually around the same results as they were in November. Stable results are joyous thoughts of thankfulness! I am so glad it is not my optic nerves! 3) Thus, the cause and problem is cataracts. I see a surgeon specialist, highly recommended by my ophthalmologist, on May 14th where we will discuss what comes next. For now, it is back to waiting in the blur, without worry.

So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.

2 Corinthians 4:18, NIV


Filed under Adjusting to NF2, Family Times, Hospital Trips, Uncategorized

Today’s expectations

I expected it to be an early morning: 5am, it was.
I expected the coffee machine at Children’s to boost my morning energy: the new machine was broken. 8am, no coffee.
I expected the appointments to discuss the main issues–balance, intestines and overall function–with a long list of things that can help for “future” changes: it did, but without the long list.
I expected my MRI results to come back reporting “stable” conditions, even though I have still experienced  some physical changes, like numbness in the right hand: it did and I am thankful for no tumor growth.
I expected my doctor to want an MRI in another 4 months: he didn’t and left the choice to me. Next MRI is planned for mid-August (6 whole months!) 🙂
I expected all my questions to be answered: they were, along with much great conversation.
I expected to leave by lunch: 12pm, we did.
– – –
Life is often lived in arrays of expectations. A day like today shines bright and hopeful; other days, the expectations fall into shadows of despair. And what of the expectations I hold for myself? I often feel the “need to perform” or “prove” to doctors that I am still doing my best possible. And though I did not struggle much with that today, there were still moments. And what of the Great Physician? Why do I feel the need to prove myself to God physically? He knows my body is broken. And he heals: maybe not in the ways I expect, but always in hope.

The hope of the righteous brings joy, but the expectation of the wicked will perish. ~Proverbs 10:28 ESV


Filed under Adjusting to NF2, Hospital Trips