Peaceful-5 Days before DSAEK Surgery

1/31/13 Thursday

Well, I’m now 5 days away from my surgery.  I haven’t been worried about the roads like I was before I started praying, in faith, for God to make clear, safe paths through the mountains for us.  Now and then a tiny worry will enter my mind and I just say, “Nope, God will clear the way and be with us.  There is nothing to worry about.” Same with the surgery.  I know so many people are praying for me…I really can feel it, a total peace from God. It’s awesome!  I’m excited to see better, even though it will be one or more months before it clears up for good vision after the surgery.

Surgery Date

Well, the time has come and I now have a surgery date for my first corneal transplant.  The date is February 5th. 2013, in Portland with Dr. Mark Terry who was the first in the U.S. to do this type of surgery and has a success rate well into the 90% range.  My husband and I will be staying in Portland for 7-14 days before returning home, depending on how things go. 

I was just approved for pre-existing health insurance.  What a huge praise!  Our costs have gone from $60,000+ to more like $12,000-ish.  (for both eye surgeries) Of course, now we're praying for provision for that amount, since we don't have it.  I am hoping to get both eyes done in 2013. We know that God will provide and give us wisdom for how we can pay for the expenses.

Now that it's a go, I've been somewhat anxious, especially since it all happens with me being awake!  Yep, awake!  I know this is something I cannot do, so God will have to enable me when the time comes.  I had to be put out just to get my wisdom teeth out, so the thought of my eye being cut open and a layer of my cornea being peeled off like wallpaper and a new layer of donor tissue put on, is beyond me.  

Then, there's the donor tissue.  I'm so thankful for it, yet so sad for the donor family.  At the same time, I remember in my grief after my father died, getting a letter notifying us that two people had regained their sight due to my dad's donor eye tissue.  I burst into tears, but it made me so happy to know that his death helped someone else.  So, maybe that fact will give a little solace to the donor family and me as well.  I will be praying for them. I sure never thought I'd find myself in this position back then.  

My mother recently had cornea transplants in both of her eyes and she is doing well and seeing better than she has in her whole life.  Her procedure, called a DMEK, was a little different than mine will be and my outcome will more than likely not be as good (she's seeing 20/25 without correction and she just had her first surgery in late June and the second in late September);  the reason for the differing outcomes is that they are removing the same amount of my tissue, but replacing it with a thicker layer of the donor tissue, resulting in my cornea ultimately being thicker than it was originally. (called a DSAEK)  The recovery time is longer as well.  Months as opposed to weeks.  This is still better than the full transplants they used to do, which took 18 months or so to recover from.

I guess that concludes my update. Please keep me in prayer as the time gets closer for my surgery.  I know God will be with me and has my best in mind.

The "eyes" have it...again!

I've put off writing this post for a while...

As I write this, my Fuch's symptoms have returned after about a month of clear eyesight. In my humanness, I can only ask "why?" and pray that they may go away again. I know God doesn't mind me asking, as long as I continue to trust in Him and know that everything He allows, He allows for His perfect and greater purpose in my life and for His glory.

Although I'm saddened and frustrated to have this "thorn" back in my flesh, I am truly thankful for the time I had with clear vision. There is a song that keeps going through my mind regarding this situation, it's a praise song that we sing at church. They lyrics say, "You give and take away, you give and take away. My heart will choose to say, Lord blessed be your name. Blessed be the name of the Lord, blessed be the Lord."

So, what do I mean by Lord? Usually, we refer to God as Lord, God our Father, etc...when we pray. There are many names in the Bible, for God. God refers to Himself with many other titles. The names reflect His character, purposes, and His attributes. God reveals His power and glory to His people through His names.

One of my favorite names for God is Jehovah-Rophe or Jehovah-Rapha,"the Lord God heals." (Psalm 147:3) It means to restore something to its original or normal state. God wants to heal us. However, it's not always a physical healing we need the most. Because of sin, we all need spiritual healing and sometimes we need emotional healing. Our 'land' may even need to be healed.

Another one of my favorite names for God is "El Roi." El Roi is "the God of seeing." He sees everything. This name may be used to ask God to reveal something to us by opening our spiritual eyes. God sees it all. The God who sees, or El Roi means that God sees the suffering and afflictions of His people. He will help us if we are humble and call upon Him. (Hebrews 2:18)

These are two of the names of God that I have chosen to call upon in my life, for I have needed spiritual healing. I've had many physical afflictions and even some emotional things from which I've needed healing. The Lord is faithful and has been with me through thick and thin. Do I always "feel" His presence? No, but I know He is there. Each time I pray and read His word, I have experienced God. If God chooses to permanently heal my eyes, I will give Him glory; and if He chooses not to...I will give Him glory.

Either way, I continue to choose to glorify God, experience Him and His work in my life and I will wait in expectation to see what He will do next, in and through me.

Stay tuned...

Hindered

One of my favorite things of the year is photographing Vacation Bible School for our church. We hold outdoor Bible schools in four locations, with three in the morning and one at night. My "job" is to go around and photograph at each of the locations.

This year I was sick in bed all day on Monday, so I already missed a whole day of moments. In spite of my recent check up, I can tell that my eyes have indeed declined this year. There are things that "fuchies" (people with fuchs) see and deal with, that aren't indicated by a certain vision number like 20/40, etc... Last year, I wore my sunglasses, but had them up on my head most of the time so I could see to take the pictures. I photographed at all the locations and didn't have the pain and migraines like I had this year from the sun and glare on my eyes. I even had to take Thursady off from photographing because my eyes hurt so much and I had to rest them. They are dryer than last year, too. This is especially troubling for me as an outdoor photographer!

As a result, I didn't get nearly the number of pictures this year and I missed so many moments. (the worker kids water balloon fight, the set ups and take downs, etc...) I went home early from our end of VBS party, too. I just couldn't do it anymore. (I was also under some emotional stress this year that added to it) I missed the goodbyes with the teams that had come to help us for the week and everything. This saddens me greatly as does the fact that I didn't get to know everyone as well as in past years.

Of course, it doesn't end there. Being a digital photographer, more time must be spent uploading, backing up, keywording and post processing the images; yet another strain on my eyes. I'm still working on them and it's taking longer than usual.

I was hindered in my ministry this year but I know God will bless what I was able to capture, for His glory! I also know that God will somehow use me and what I'm dealing with to help someone else either now or in the future. I'm excited about that!

For those of you who are prayer warriors, please pray for my friend Tanda that's having eye surgery on July 30 at 11:30am. I know she must be somewhat nervous and especially knowing someone else must lose their life in order for her to have renewed vision.

Tanda, if you are reading this, please know that when my dad died, we received notice that not one, but two people regained their vision because of his donation. It was a great comfort to us to know that because of him someone else's life was made better.

What is unseen

*A personal note: Let me begin this post by speaking to those of you who've committed to praying for me on a daily basis. Your prayers uplift and encourage me and are appreciated more than you could possibly know. Who knows where I'd be without your love, prayers, and support. So, thank you, from the bottom of my heart!


The month of May has come and gone and I haven't gone in for my eye check-up. I know, shame on me. I have good reasons, but not good excuses. I suppose the biggest reason is that I don't really want to know or think about how my eyes are doing. Is ignoring it really a coping mechanism or is it trusting the Lord? Am I just doing what needs to be done each day, the best that I can, in spite of the state of my vision? I hope so.

I believe that sometimes it's easier to just keep going along and not really think about my eyes much, other than the day to day inconveniences they cause me. Each morning I put in my eye drops, knowing that it's taking longer for my foggy vision to clear up, and that eventually it won't clear up at all and I'll need a corneal transplant; two of them. I find the more I think about it, the more my focus is on me instead of God and that hinders me from doing what I should be doing for Him. The irony is that a big part of what I do as a profession and to glorify Him is dependant on my vision. The truth is, each day I'm very aware of my eye problems. My vision, or rather lack of good vision is effecting my business and life more and more and I'm keenly aware of that fact on a daily basis, whether I admit it to myself or not. I've tried to stop talking about it to my family, since there's nothing they can do but pray, there's no reason to burden them with the details; although, I am forced to enlist their help at times to read a street sign or tell me if my image is in sharp focus or not. (here's where money for a camera/lens upgrade would be extremely helpful. Yet another miracle I'm praying for.)

Sometimes I think, "I'm tired of taking pictures." Yet, I know that I love taking pictures and I am not tired of taking them. I think the problem lies more with the struggle of straining to focus, the eye pain and fatigue from the glare of the bright sun or computer monitor, etc... I think I'm just tired of dealing with my eyesight. There's a struggle that goes on with each step of the process of my photography, and life in general, for me. Sometimes I get very frustrated! Sometimes I get mad! Sometimes I get the "poor me's." Yet, what Christ suffered for me is so far beyond what I think of as suffering. I can, after all, still see! Praise the Lord! The pain I have with my eyes (& other parts of my body) are nothing compared to the pain Christ was willing to suffer for me. Wow, I'm such a whiner, hu? What right do I have to complain?

So, speaking of Christ, where does my faith come into all of this? What do I know of God? I know He loves me. I know He sent His Son to die for me. I know He has a plan for my life. I know that His plan is perfect. I know that plan is for my good. I know God is able to heal me. I know that healing may not be in His perfect plan for me. I know He expects me to trust Him. I know He expects me to serve Him. I know He expects me to obey Him. I know He expects me to glorify Him. I could go on and on with this list.

Here's a scripture passage that encouraged me today...

2 Corinthians 4:16-18 "Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal."

Dear Lord,

Please give me strength to face each daily task and help me to not grow weary of the many struggles that come my way. May the eternal glory you're achieving in me shine bright for others to see. May each image I take point others to you through the glory of your creation. As I await your healing, whether on earth or in heaven, may your plan be completed in me and may this sinful servant be found faithful in your sight, no matter what you choose to do with mine. May the lessons I learn on this journey help me to encourage others going through similar situations in this life. In everything, may your will be done. In Jesus precious name, Amen

So, it would seem that my biggest reason for not going to the eye doctor is fear. Not a good reason. Okay, okay, I'll make an eye appointment! Sheesh.

"Fickle Fuchs"

Fuchs is often referred to as fickle Fuchs because the symptoms can be so unpredictable and vary so much person to person. The disease typically begins progressing in a person's 60's or later, but there are teenagers who present with symptoms. It is genetic, but some people never have any symptoms at all, while other family member's progresses to the point where corneal transplants are necessary or blindness will ensue.

It is also fickle within each person. The fluctuation and changes in my eyes on a daily basis are amazing. Some mornings things look very foggy and others...not so much. Some mornings my eyes are VERY watery, and others...not so much. Some mornings my eyes are VERY sensitive to light and others...not so much. Some mornings I can read from my large print Bible, other mornings...not so much. Some mornings my sight clears up pretty well by noon or early afternoon, some days...not so much.

I really don't have days where I can go outdoors without my dark sunglasses anymore; at least not without my eyes watering and burning really bad and hurting and getting a migraine. This makes it hard to do photography sometimes. There are days where I must wear my sunglasses indoors, as well, especially if the lighting is flourescent. Some stores are really painful on my eyes.

Some days even with my eye drops they don't ever totally clear up, now. That's normal as the disease progresses. It takes longer and longer for them to clear as the corneal swelling goes down until enough cells die that they cannot dry up and the fog, and watering and poor eyesight continue and blindness is eminent unless a corneal transplant or divine healing happens. That's just the nature of this beast. I won't mention the painful breaking blisters that come along with that extra retention in the cornea because that will get me down unnecessarily. I may not have to get to that stage, and I'm not there now. So, I will not borrow trouble from tomorrow.

"Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Who of you by worrying can add a single hour to his life." Matthew 6:26-27

God instructs me not to worry. He loves me and will take care of me no matter what happens. I am very valuable to Him. (I know I just quoted these verses in the last post, but they are very special to me and God keeps bringing them to my mind and comforting my heart with them.)

Since there's only so much I can do about my eyes and symptoms, I will just keep taking advantage of my good days and rely on my audio Bible and such the other days. I will continue to trust the Lord and do His work as I wait on Him.

"Finally spoke with the Corneal Specialist"

Today I finally got a call from the corneal specialist that had been recommended to me by someone whose transplant was done by him. From looking over my chart from my eye Dr, he doesn't seem to think that I'm quite ready for the transplant, yet, unless my vision deteriorates a lot in the next year. He says that my Dr. can still get my eyes to 20/20 with glasses. He can't see what I see, though, so I'm not so sure I agree with him. On the other hand, he hasn't seen me for himself and I still don't have a corneal thickness reading.

He says that the full transplant will make my cornea an irregular shape, like a football at least, but sometimes even more severely distorted. He said that sometimes a hard corrective lens is needed after the surgery. (I already have astigmatism, but only slight) He also said that it usually causes near or far sightedness, which I don't have right now, and would need glasses or corrective lenses for that.

He told me a bunch more about Fuchs that I already knew, but I listened to see how knowledgeable he is about it. He seems to really know what he's talking about, or at least confirm most of what I already was able to find out through research and my online support group.

He seems to think because I am a photographer, I should not rush into the surgery too soon as my vision may be worse than it is now and harder to correct. I guess I'll keep tracking my symptoms and be in prayer about it.

"There is Joy"

I've had a couple of bad vision days recently and am also struggling with a bit of depression. Satan tried to deter me from going to church this morning. I really wanted to just drop my kids off and go back home and crawl back into bed. But I didn't let him win. Take that, satan!

I'm so glad I went to church. The music is always great, but one of the songs was especially uplifting for me to sing today. It goes like this...

In The Presence of the Lord

There is joy, there is joy,
There is joy in the presence of the Lord.
There is joy that's full, there is joy that's free;
There is joy in the presence of the Lord.

There is peace, there is peace,
There is peace in the presence of the Lord.
There is perfect peace when I rest in Him,
There is peace in the presence of the Lord.

There is love, there is love,
There is love in the presence of the Lord.
There is love that's real no matter how I feel,
There is love in the presence of the Lord.

Stand and sing, stand and sing,
Stand and sing in the presence of the Lord.
Stand and sing your praise to the risen King;
Stand and sing in the presence of the Lord.

Another thing that was a real blessing to me today was that before my husband left to go out of town for the week, (at 3am this morning) he left post-it notes all over the place! One on the bathroom mirror that reads, "I love you!" One on the coffee pot (that was ready to brew when I got up this morning, just like it is nearly every morning) that reads, "Just for you, babe!" One in the refridgerator that reads, "I'm thinking of you." One in the car that reads, "Miss me yet?" I'm sure I'll find more througout the week. He's so sweet! I am so blessed to have such a wonderful man for a husband. He even left some just for our girls in their rooms/bathroom.

Anyway, I just thought I'd share that with you all. It's so good to be reminded that even in hard times we can have joy, peace, love and rest in the presence of the Lord and in the blessings He bestows upon us. Simple truths of God's character! He is always the same, no matter how I feel! I praise Him for that!

"Brave?"

I recently had a friend of mine call me brave. Brave? Me? I don't think so! I am sometimes on the verge of tears and and feeling quite weak, emotionally and physically. Brave is a word normally used to refer to war heroes and soldiers; like our troops fighting in Iraq right now for our safety and freedom. Brave is a word used for the strong, and those that protect! Brave is not a word that I would use to describe myself!

I usually feel as though I am one of the weakest people I know. Some would even say I have a weak constitution. I have Celiac (wheat gluten allergy) and many other health issues and yes, I have fears...The thought of going blind scares me! The thought of getting a corneal transplant scares me! The thought of losing another loved one scares me! I know from experience that it's what my mind comes up with ahead of time that is scary, not the event itself, although it can be uncomfortable. It's a game of "what-ifs."

So, it's a mental thing, right? Well, in a way...I mean, thoughts and feelings are one thing...but what we do with them or in spite of them is another, right? For instance, I am afraid of flying. I love it, but it scares me to death. On the one hand, thinking of falling out of the sky all those feet down to the ground is scary! On the other hand, from up there in the sky I can see the beauty of God's creation in a whole new way and it's easier to see how God can keep track of what's going on in each of our lives. I remember that He loves me dearly and my life is in His hands. So, in spite of the fears, I went on an airliner and then a small plane during my recent trip to California and Acapulco. I also faced the fear of being on a cruise ship out away from land.

How did I do it? With the strength of the Lord, I "bravely" stepped or should I say flew out in faith. I faced my fears, but not alone. One of my now favorite verses is one I memorized for my first airline flight..."Have I not commanded you? Be strong and courageous! Do not tremble or be dismayed, for the Lord your God is with you wherever you go." Joshua 1:9 (NASB)

Don't get me wrong, that's not to say that I never tremble or fear...I just know that God is with me and I continue to do what scares me in spite of how I feel at the time. No matter what comes my way, I lean on God and His love to give me the strength and courage to face it. So now you see why it's not me who's brave, but God's strength in me that causes me to act brave. I am weak, but He is strong. I also have many wonderful friends and family members who pray for me and lift me up when I'm in a weak moment and that encourages me to face another day. (but that's another whole post)

Here is a Kathy Troccoli song that is close to my heart and very applicable as I face an uncertain future concerning my sight. I hope it will encourage you to be...brave.