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.
Showing posts with label degenerative. Show all posts
Showing posts with label degenerative. Show all posts
Tuesday, December 2, 2008
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.
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