Tag Archives: seeing hope in difficulties

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. ūüôā 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

[Chorus]
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.

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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. ūüôā

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. ūüôā

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

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Filed under Adjusting to NF2, Hospital Trips, Uncategorized

Now what?

I have to be honest.¬†I have been procrastinating writing¬†this particular post since Friday. Oh, I tried. And it resulted in tears of frustration. Last week was rough. It was not a good week. I kept finding more things during the day that I could hardly do–the last being I could no longer clip my left fingernails. And¬†I use huge clippers! By Friday night, I just broke down physically and emotionally. I looked in the mirror and could not see anything positive.

Since the decrease of¬†my steroids¬†and now¬†back to¬†them¬†consistent, I have been doing¬†stable. I have full energy back most of the time (at least¬†I feel more energetic) and most of the weight I felt on my upper back is lifted. But I feel it affected my hands on a more permanent level: more weakness and numbness–especially in the right hand as my ring finger is now very heavy from the numbness. I also find I have¬†more curl in the left ring finger… when carrying things I don’t even use that finger. I am having a harder time opening things (especially in the kitchen), putting on makeup, putting in my earrings, unbuttoning my pants in a hurry, putting on thick socks, and typing. In a word: slow. I am getting slow.

I am thankful though that my back is not as heavy as two weeks ago. I have only had a few times of the extreme neck pain. At Thursday’s appointments, I saw some doctors from the Pain Management team. They prescribed these special patches that you place on your area of pain and it helps decrease the pain by numbing it.¬†I have not had to use them yet, but thankful for this because it gives me more freedom to still continue things I would have been doing otherwise. When¬†I use the rice pack, I¬†have¬†to hold¬†on to it or balance it¬†and that gets difficult. They also recommended I get a Physical Therapy evaluation and start PT. It was actually one of my questions as I have been trying to work on my posture–which helps balance, strengthen the back muscles, stimulate bowel movement and just help me in the long-term.

Otherwise, my main doctor and¬†I discussed the steroid pills in terms of steadily staying on them for the time being. I have decided against the other two chemo treatments at this time, but really glad that we discussed things…because it gives me a better understanding for if and when the time comes to reconsider the options. I got all my questions answered. ūüôā

Right now¬†I am frustrated and sad.¬†I got my left hearing aid fixed and my ear cleaned yesterday and I still cannot hear; Which means I am going to get a hearing test very soon! (Monday to be exact).¬†But it is hard. I now realize how much I depended on my left ear. I cried last night¬†when¬†my dad had to write down what he was saying so I could¬†understand. I think it is time for¬†me to take another lip-reading class and touch up on my sign language…although due to the hands, I focus more on lip-reading anyway.

Remember my very first post of the New Year? (You can read it here). I talked about seeing the birds in the winter…their safe haven being the butterfly bush outside my window. Here almost two months has gone into the year and how easily¬†I¬†have forgotten that¬†God feeds these birds and knows their¬†needs (Matthew 6:25-27). In my own life, I have felt like these birds–in the cold of winter, finding a safe haven among the little branches of the bush even though the wind and snow still are all around. Almost as if when I say, “Will winter never end?” But really mean it more towards all the current health problems…finding new daily obstacles is like waking up to realize you have to scrap off your icy windshield again.

Today my cat¬†led my attention to a¬†male¬†cardinal¬†outside on¬†the branches of the bush. When Muffy’s ears perked up, I looked and there¬†it was: brilliant red. ūüôā Of course all¬†around¬†outside was snow, but there¬†it¬†was…in the gusty, snowy wind minding¬†its own business. As the wind started to blow, the cardinal’s actions¬†resembled how I feel at the present moment: clinging for dear life. I watched for a while and asked myself, “And what am¬†I clinging to?” The hopes that my body¬†will go back to the way¬†it was before?¬†Quite possibly.¬†Like I said…this weekend, I just dismissed everything. I did not really even talk to God, because I did not know what to say and I was trying¬†not to be angry about all these new changes. I get tired of change.

I don’t want to be stuck in the ruts of winter months forever, so I do need a change. I need to change back to seeing hope in all circumstances. It has already started. I have been going around and making notes of things that are difficult and possible alternatives. My family has been there with suggestions and support. And I know that God does see my life living with potential. I just finally have to cling to that promise with my whole heart.

‘Let not your heart be troubled,’ His tender word I hear,
And resting on His goodness, I lose my doubts and fears;
Though by the path He leadeth, but one step I may see;
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me.

Song: “His Eye is on the Sparrow.” To read more about the story of this hymn, click here.

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Filed under Adjusting to NF2, Hospital Trips, Muffy