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.
Tuesday, December 2, 2008
Wednesday, November 26, 2008
Obama's Brilliant Plan-Socialized Medicine
Well, I was thinking...maybe too much, about Obama and this coming January and the next four years. It's quite scary to think of what he may do to this country, it's citizens, taxes, economy and who knows what else.
The future of my eyesight is at stake here, and that's no comforting thought. To think that I may need a corneal transplant in the next four years and yet not be able to get it because of socialized medicine. I may go blind waiting for the doctor or donor tissue I need if our health care changes dramatically. I used to think HMO's were bad and that we didn't have much say over our health care with those, but what Obama plans to do will make HMO's look desirable! This type of plan has failed in so many other countries, so why in the world does he think it's a good plan for "free" America? Well, that's a whole other blog post for a different type of blog.
It's a good thing I know the Lord and that He has a plan to prosper and not to harm me. I thank the Lord that my sight is in His hands and I can trust my future to Him, because otherwise I might tend to worry myself sick over the future and the coming administration of Obama.
"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
I love these verses. They give me such comfort! I know that faith in God will get me through whatever lies ahead for me and for our country.
The future of my eyesight is at stake here, and that's no comforting thought. To think that I may need a corneal transplant in the next four years and yet not be able to get it because of socialized medicine. I may go blind waiting for the doctor or donor tissue I need if our health care changes dramatically. I used to think HMO's were bad and that we didn't have much say over our health care with those, but what Obama plans to do will make HMO's look desirable! This type of plan has failed in so many other countries, so why in the world does he think it's a good plan for "free" America? Well, that's a whole other blog post for a different type of blog.
It's a good thing I know the Lord and that He has a plan to prosper and not to harm me. I thank the Lord that my sight is in His hands and I can trust my future to Him, because otherwise I might tend to worry myself sick over the future and the coming administration of Obama.
"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
I love these verses. They give me such comfort! I know that faith in God will get me through whatever lies ahead for me and for our country.
Wednesday, October 1, 2008
"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.
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.
Thursday, September 25, 2008
"Fuchs Corneal Swelling and diet"
I wonder...if diet can affect corneal edema in "fuchies." (aka: people who have Fuchs.) Or, at least for me because I'm also a Celiac (aka: someone who's allergic to wheat gluten) and tend to retain water everywhere when I eat wheat. So, maybe it makes my even my Fuchs symptoms worse when I cheat and eat wheat...as I did yesterday. You see, I'm having a bad vision day today and yesterday I ate not just wheat gluten, but also salty foods...leading to water retention. It does make logical sense and would explain why some days I wake up with very little corneal swelling and very little watery eyes and other days I awaken to a very hazy house and very watery eyes. Hmmmmmmmm. I wonder...
Monday, September 22, 2008
"Called Again"
I called my eye doctor last week to make sure they had sent the files to the corneal specialist, and let them know that I still haven't heard from him. They ended up calling him and he does have the questions I emailed to him. They are at his house and he's supposed to call me.
Monday, June 9, 2008
Thursday, May 29, 2008
"Dr on Vacation"
I got a call from the corneal specialist's office. Turns out he's been on vacation and will be out for another week. I'm thankful to have heard something from them so I know what's going on.
Wednesday, May 28, 2008
"Eye Appointment"
I just got back from the eye Dr. This is my regular eye Dr., not the corneal specialist. (I'm still waiting to hear back from him.)
He took much time and care to check my eye for any changes and to check the overall health of my eyes besides the Fuchs'. It's nice to have a Dr. that actually cares about the patient.
My eyes are healthy besides the Fuchs'. My left eye had more swelling than my right.
I don't need a change in my eye glasses. I just need to figure out what times of day or night it's best to wear them. With my eyesight fluctuating because of the corneal swelling, sometimes they bother me and I can see better without them. Wierd.
I had a glare test done today. That was strange. My eyes were worse with the glare, but I forgot to ask for details about how much a difference there was. I know it's not nearly bad enough to lose my license or anything, though. It was quite interesting to see the difference between reading the letters under ideal conditions and again with the glare of the light shining at me.
My optometrist is sending my records to the Corneal Specialist. Maybe that will help get the ball rolling for me since I haven't heard anything back from him, yet.
He took much time and care to check my eye for any changes and to check the overall health of my eyes besides the Fuchs'. It's nice to have a Dr. that actually cares about the patient.
My eyes are healthy besides the Fuchs'. My left eye had more swelling than my right.
I don't need a change in my eye glasses. I just need to figure out what times of day or night it's best to wear them. With my eyesight fluctuating because of the corneal swelling, sometimes they bother me and I can see better without them. Wierd.
I had a glare test done today. That was strange. My eyes were worse with the glare, but I forgot to ask for details about how much a difference there was. I know it's not nearly bad enough to lose my license or anything, though. It was quite interesting to see the difference between reading the letters under ideal conditions and again with the glare of the light shining at me.
My optometrist is sending my records to the Corneal Specialist. Maybe that will help get the ball rolling for me since I haven't heard anything back from him, yet.
"Current Symptoms" May update
"Current Symptoms" Bold, italic words indicate changes from last post of current symptoms.
*Trouble reading road signs/fast food menus/printed material/Bible -Either can't focus to read or get extreme strain and or bad headache from reading. (started using audio Bible in March and learned to Ctrl scroll to make online print larger for reading) Very hard to read captioning on TV or reader board that scrolls across during Nascar races, get eye strain if I try.
*Eye pain with bright/fluorescent light-I'm now wearing sunglasses indoors at church due to florescent lighting and at home if drapes are open as well as outdoors.
*Burning/watering eyes-Especially in sun or bright light. Hard to do outdoor photography.
*Imaginary moving objects/shadows-While driving, especially at night I think I see things/people in or by the roadside that aren't there.
*Imaginary moving objects/shadows-In the house, Seems like things flash by quickly, like a mouse or spider is in the house and just went past and I turn my head to look and nothing's there.
*Watery eyes in AM-Started using Muro 128 eye drops in March, but switched to natural MSM eyedrops Late April/early May. I am using two drops in each eye to help dry them up, helps vision.
*Hazy vision in AM-some mornings looks like light layer of smoke is filling the house. MSM eye drops are helping with this.
*Halos-around street lights-big round fuzzy areas of halo around street lights/porch lights. light bulbs-Can't see filament, looks like marshmallows with streaks coming off.
*Glare-night driving-headlights cover both sides of road. computer screen-must turn down or wear sunglasses back lit objects-very little detail off metal objects-especially sun glaring off cars.
*Dry Eyes-Dry and burning in afternoon/evening-Using Gen Teal wetting eye drops, as needed.
*Trouble reading road signs/fast food menus/printed material/Bible -Either can't focus to read or get extreme strain and or bad headache from reading. (started using audio Bible in March and learned to Ctrl scroll to make online print larger for reading) Very hard to read captioning on TV or reader board that scrolls across during Nascar races, get eye strain if I try.
*Eye pain with bright/fluorescent light-I'm now wearing sunglasses indoors at church due to florescent lighting and at home if drapes are open as well as outdoors.
*Burning/watering eyes-Especially in sun or bright light. Hard to do outdoor photography.
*Imaginary moving objects/shadows-While driving, especially at night I think I see things/people in or by the roadside that aren't there.
*Imaginary moving objects/shadows-In the house, Seems like things flash by quickly, like a mouse or spider is in the house and just went past and I turn my head to look and nothing's there.
*Watery eyes in AM-Started using Muro 128 eye drops in March, but switched to natural MSM eyedrops Late April/early May. I am using two drops in each eye to help dry them up, helps vision.
*Hazy vision in AM-some mornings looks like light layer of smoke is filling the house. MSM eye drops are helping with this.
*Halos-around street lights-big round fuzzy areas of halo around street lights/porch lights. light bulbs-Can't see filament, looks like marshmallows with streaks coming off.
*Glare-night driving-headlights cover both sides of road. computer screen-must turn down or wear sunglasses back lit objects-very little detail off metal objects-especially sun glaring off cars.
*Dry Eyes-Dry and burning in afternoon/evening-Using Gen Teal wetting eye drops, as needed.
Wednesday, May 21, 2008
"Questionnaire"
I have sent a questionnaire to a corneal specialist over in Idaho Falls. He was recommended to me by someone on my online Fuchs' Support group. If I like his answers and feel comfortable with the possibility of him doing my corneal transplant surgeries, I will make an appointment to see him. It will be quite a drive and some gas, but well worth it for the security of knowing I have someone well qualified to operate on my eyes.
I am awaiting his reply.
Thursday, May 8, 2008
"New Eyedrops Update"
Well, I've been taking the new, natural eye drops for just under a week, I think. They don't burn like the Muro 128 drops do. I like that fact, though I'm not so sure they do as good of a job drying up my eyes and helping with the corneal swelling.
My eyes don't seem to be quite as sensitive to light as they were before, but today they are quite sensitive, so maybe it's just a coincidence. I am encouraged enough for now to continue to use them.
My eyes don't seem to be quite as sensitive to light as they were before, but today they are quite sensitive, so maybe it's just a coincidence. I am encouraged enough for now to continue to use them.
Monday, May 5, 2008
"The Voice of Truth"
This is the video of a song that speaks to me. It encourages me on this journey. Not just Fuchs', but life in general.
This song, helps give me the strength to face another day: When I feel trampled on and attacked. When I'm overwhelmed and feeling so helpless. When everything seems to be going wrong and I feel like a failure in all that I do. When I know there's nothing I can do to help someone that I love with something they are going through. When Satan puts lies in my head. When my tears become so numerous that I feel like I may drown in them.
May this song encourage you as it does me.
This song, helps give me the strength to face another day: When I feel trampled on and attacked. When I'm overwhelmed and feeling so helpless. When everything seems to be going wrong and I feel like a failure in all that I do. When I know there's nothing I can do to help someone that I love with something they are going through. When Satan puts lies in my head. When my tears become so numerous that I feel like I may drown in them.
May this song encourage you as it does me.
Friday, May 2, 2008
"Package Received"
I received the package containing my new natural eye care vitamins/herbs/minerals today. I am anxious to see what, if any, improvements or positive changes that come about as a result.
Monday, April 28, 2008
"Natural Eye Care"
Today I ordered some vitamins and eye drops from the Natural Eye Care website. From reading all about them, I feel pretty good about trying them especially since they contain all and more items that are in my other vitamins but some of the most important ingredients are at more therapeutic levels and the fact that I won't have to take some of them separately. I just can't swallow all of the different things that are good for vision. We'll see how they work...
Click here to go to the Natural Eye Care website. Choose the eye problem you have to get a list of things you can do to help your condition.
I am also going to do a better job of not eating the foods that I'm allergic/sensative to. That's part of the vision diet as well as my own health regimine that I've kind of been fudging on for a while. I have gained some weight due to that and also I'm sure it is not helping my mood any to eat the junk foods, and even healthy foods if I'm allergic to them.
Click here to go to the Natural Eye Care website. Choose the eye problem you have to get a list of things you can do to help your condition.
I am also going to do a better job of not eating the foods that I'm allergic/sensative to. That's part of the vision diet as well as my own health regimine that I've kind of been fudging on for a while. I have gained some weight due to that and also I'm sure it is not helping my mood any to eat the junk foods, and even healthy foods if I'm allergic to them.
Sunday, April 27, 2008
"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...
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!
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.
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!
Friday, April 18, 2008
"Shut Windows"
I found a poem this morning that I believe can be beneficial to all. Sometimes our sight is good throughout life. Not everyone has eye problems. Not everyone with Fuchs' totally loses their sight before having it restored through corneal transplants. Some eyes are supernaturally healed. Some people are born blind and are blind throughout life, with no option of transplants. Whatever your degree of blindness or renewed vision, I believe this poem is uplifting.
It makes me think of that song, "Open our eyes, Lord, we want to see Jesus..." I always close my eyes when I sing that song. Why is that? Well, when we shut, or cannot see with, our literal eyes it enables us to close out everything else, open the eyes of our heart and just focus on Him. There's the other song, "Open the eyes of my heart, Lord, open the eyes of my heart, I want to see you." I can't sing that with my eyes open either and what a blessing that is! To truly see Him! Just Him! Whether blind or sighted, if only for a moment in our busy day, or for each and every moment of our busy day. To see Him, to know Him, to trust Him, to experience Him, to serve Him, to love Him...to see...Him.
"Shut Windows"
When the outer eye grows dim,
turns the inner eye towards Him
who makes the darkness light.
Fairer visions you may see,
Live in nobler company
And in larger liberty
Than the men of sight.
He sometimes shuts the windows but to open hidden doors,
Where all who will may wander bold and free,
For His house has many mansions, and the mansions many floors,
And every room is free to you and me.
~John Oxenham~
Tuesday, April 15, 2008
"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)
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.
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.
Monday, April 7, 2008
#1 "Diagnosis..."
It still seems unreal to me that this blog is even necessary...but it is. Let me start at the beginning...
Two years ago this May, my two daughters and I went to the eye Dr. for a routine visit. Just a check-up to make sure things were fine. Maybe get a new pair of glasses for myself or try contact lenses or both. Well, they ended up asking if we wanted a digital photograph taken of our eyes. I wasn't going to since it was $12 each and not something the insurance normally covered, but something made me decide to do it anyway. When the Dr. showed us the photos on the monitor of each of our eyes, I (being a photographer) noticed that mine looked blurry and soft while the girls' photos looked sharp and clear. I asked, "Why does my photo look so hazy?" He said he would talk to me about mine after we look at the girls'. I didn't really hear much after that except something about my daughter needing glasses until some muscles were strengthened. All sorts of things went through my mind, but I was still not prepared to hear his words regarding my eyesight. He told me he thought I had a rare, degenerative corneal eye disease, called Fuchs' Endothilial Corneal Dystrophy. It could someday cause blindness. Sometimes it happens sooner and sometimes later, sometimes faster and sometimes slower, but not to worry about it right now. He suggested I go to a specialist to get a second opinion and confirmation and he'd check them again in a year to see if there were any changes.
I went home kind of shell-shocked. I didn't really know how to process what he told me, and I can't say now just how I responded since it is all a vague memory now and I wasn't thinking straight. I do know that I called my husband and told him the strange news, made an appointment with the specialist and called my pastor for prayer suppport. I also spent time in prayer, trying to maintain, while I awaited the upcoming appointment.
The day of the appointment came and it was confirmed. I did have this mysterious disease in my eyes. I then went home and began to grieve for something I'd not yet lost. I thought about grandkids I'd never see, my own dear family, the sunsets and landscapes, thought about what it would mean to live in a dark world. Being blind has always been one of the worse things I could imagine. After a realistic amount of time spent in tears, I moved on to depression and proceeded to anger and fear and frustration with those that didn't share my emotions over the diagnosis and all of the other emotions associated with the grief process. I felt alone.
Then, there came a moment in time where I again got on my knees, placed all of it at the foot of Jesus and began to get back to "life as usual." I knew that God could heal me of this disease, and I trusted Him to do what was best for me. I also knew that nothing would change by worrying about and dwelling on it. In the meantime, I began to look into dietary helps, vitamins and other things that may possibly help, as well.
Some may say that giving it to God and moving on was a type of denial about the illness. I disagree. I do; however, think that it caused me to miss some of the signs that the disease was progressing. It's not that I had forgotten about it, but it wasn't something I thought about on a daily basis...it was definitely on the back burner.
Two years ago this May, my two daughters and I went to the eye Dr. for a routine visit. Just a check-up to make sure things were fine. Maybe get a new pair of glasses for myself or try contact lenses or both. Well, they ended up asking if we wanted a digital photograph taken of our eyes. I wasn't going to since it was $12 each and not something the insurance normally covered, but something made me decide to do it anyway. When the Dr. showed us the photos on the monitor of each of our eyes, I (being a photographer) noticed that mine looked blurry and soft while the girls' photos looked sharp and clear. I asked, "Why does my photo look so hazy?" He said he would talk to me about mine after we look at the girls'. I didn't really hear much after that except something about my daughter needing glasses until some muscles were strengthened. All sorts of things went through my mind, but I was still not prepared to hear his words regarding my eyesight. He told me he thought I had a rare, degenerative corneal eye disease, called Fuchs' Endothilial Corneal Dystrophy. It could someday cause blindness. Sometimes it happens sooner and sometimes later, sometimes faster and sometimes slower, but not to worry about it right now. He suggested I go to a specialist to get a second opinion and confirmation and he'd check them again in a year to see if there were any changes.
I went home kind of shell-shocked. I didn't really know how to process what he told me, and I can't say now just how I responded since it is all a vague memory now and I wasn't thinking straight. I do know that I called my husband and told him the strange news, made an appointment with the specialist and called my pastor for prayer suppport. I also spent time in prayer, trying to maintain, while I awaited the upcoming appointment.
The day of the appointment came and it was confirmed. I did have this mysterious disease in my eyes. I then went home and began to grieve for something I'd not yet lost. I thought about grandkids I'd never see, my own dear family, the sunsets and landscapes, thought about what it would mean to live in a dark world. Being blind has always been one of the worse things I could imagine. After a realistic amount of time spent in tears, I moved on to depression and proceeded to anger and fear and frustration with those that didn't share my emotions over the diagnosis and all of the other emotions associated with the grief process. I felt alone.
Then, there came a moment in time where I again got on my knees, placed all of it at the foot of Jesus and began to get back to "life as usual." I knew that God could heal me of this disease, and I trusted Him to do what was best for me. I also knew that nothing would change by worrying about and dwelling on it. In the meantime, I began to look into dietary helps, vitamins and other things that may possibly help, as well.
Some may say that giving it to God and moving on was a type of denial about the illness. I disagree. I do; however, think that it caused me to miss some of the signs that the disease was progressing. It's not that I had forgotten about it, but it wasn't something I thought about on a daily basis...it was definitely on the back burner.
Friday, March 7, 2008
Current Symptoms
*Trouble reading road signs/fast food menus/printed material/Bible -Either can't focus to read or get extreme strain and or bad headache from reading. (started using audio Bible in March and learned to Ctrl scroll to make online print larger for reading) Very hard to read captioning on TV or reader board that scrolls across during Nascar races, get eye strain if I try.
*Eye pain with bright/fluorescent light-I'm now wearing sunglasses indoors at church due to florescent lighting and at home if drapes are open as well as outdoors.
*Burning/watering eyes-Especially in sun or bright light. Hard to do outdoor photography.
*Imaginary moving objects/shadows-While driving, especially at night I think I see things/people in or by the roadside that aren't there.
*Imaginary moving objects/shadows-In the house, Seems like things flash by quickly, like a mouse or spider is in the house and just went past and I turn my head to look and nothing's there.
*Watery eyes in AM-Started using Muro 128 eye drops in March, one in left eye and two in right helps dry them up, helps vision.
*Hazy vision in AM-some mornings looks like light layer of smoke is filling the house. Muro eye drops are helping with this.
*Halos-around street lights-big round fuzzy areas of halo around street lights/porch lights.
light bulbs-Can't see filament, looks like marshmallows with streaks coming off.
*Glare-night driving-headlights cover both sides of road.
computer screen-must turn down or wear sunglasses
back lit objects-very little detail
off metal objects-especially sun glaring off cars.
*Dry Eyes-Dry and burning in afternoon/evening-Using Gen Teal wetting eye drops, as needed.
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