This was originally posted on November 7th, 2014:
Over the past two years, I’ve struggled with some major eye problems. Most of my energy was spent trying to cope with pain and at the same time search for anything that might help me.
When I began to write with more detail about my eye issues, I grouped those stories under the title of “My Journey in Sight.” I was hoping that perhaps through my experience I could help other people suffering with similar problems.
I found that title so ironic because my blog “My Journeys Insight” began as a blog of self-discovery and had nothing to do with eyesight. But my eye problems have brought me insight and the additional pun just enhances my blog title.
I’m hoping this will be the last part of my “eyesight series” for a while. My eyesight journey has been challenging, but thankfully I have reached a better place and want to share where I currently am.
Here is a brief summary of my eye issues:
- In 2012, my eye prescription changed dramatically within two months. I had poor vision in one eye and a lot of fogginess at night. I realize now that some of this might have been due to dry eyes. The eye doctors told me I had mild/moderate cataracts so I went ahead and had cataract surgery on both eyes.
- Six months later, I had Posterior Vitreous Detachment (PVD) in both eyes. This is considered a common age-related occurrence, but it was shocking for me. Cataract surgery often leads to PVD and I was very near-sighted, which increased my risk for complications.
- I had a lot of trouble adjusting to the blurs and dark floaters from PVD. I was able to work on my computer and perhaps because of PVD and intense staring, I experienced unbearable pain in my eyes. I went to Urgent Care and was told I simply had mild Blepharitis and dry eyes.
- My dry eye journey was lonely and torturous. The first cornea doctor told me that nothing else could be done. (Other than my current regimen, which was wiping my eyelids, using a hot compress and Restasis eye drops).
- For two years I lived with constant pain and fogginess in both my eyes. I could see well enough to work, drive and function outwardly. But my condition led me to become deeply depressed and withdrawn.
I did change doctors; I found another corneal specialist who was willing to go through a long list of dry eye remedies. It was very discouraging when nothing brought relief.
I see my eye problems as a metaphor for many other human conditions – so I’m hoping that anyone reading this could relate it to other ailments and struggles. Because hope was something I held onto during grief, I found many of the exchanges on the dry eye forum I subscribe to very touching. I share excerpts of posts from different people over the last few months that paint a picture of what people with dry eyes deal with.
Is dry eye considered a disease or a syndrome??
I would call it a condition that is chronic, which means there is no cure but with regular maintenance the symptoms are bearable in most cases….
The technical term for dry eye is PITA. Pain In The Ass!
I don’t think recovery is possible anymore. All I read everywhere is pain, pain and pain for years with and NOTHING helping. I don’t think life is worth it with this. I’m losing hope.
Don’t lose hope! Maybe we cannot recover completely, but I have hope we all can find a way to live with it, or at least have some good days without as much pain or redness.
I also don’t know anyone personally who has this disease. Before I was in this group I felt very alone. I think it helps “talking” and reading how others cope with it.
Hey, the last thing you can do is lose hope. Just try to live your life one day at a time. Every day new discoveries are made, I know recovery may be slow and painful, but I am sure it will happen.
This group has already taught me so much. My improvement isn’t great but it is better, don’t lose hope! We must never lose hope!
Sometimes I feel like I’m missing something. You have all these eye doctors saying dry eye is very treatable and then all of us patients who suffer on a daily basis. What’s the deal? It’s a constant struggle for some of us.
Dry eye isn’t so much a curable condition, as one we have to manage – at least that is how I feel .
I’d just like to put this out there. I’ve done a lot of research and I’ve come to one conclusion. The treatment of dry eye takes a long time. Certain medical abstracts talk a lot about patients getting discouraged with their current treatment and quit and go on to the next thing. My point is find a doctor that can give you the best diagnosis and don’t get discouraged when you don’t feel better with treatment after a month or two. I’ve definitely improved although not close to 100% but I’m much better than I was when I first started.
I have had dry eyes for 26 years now and I did give up. I felt like no matter what I did nothing was helping, so I did nothing for years. Oh, how I wish I could take those years back and have a redo! I just had surgery for recurrent cornea erosions on Friday because of this.
The problem I have with different treatments is that it seems like any treatment I try seems to irritate my eyes more. My corneal specialist has said to not continue a treatment if it hurts my eyes.
I think I’m gonna explode. Sorry to vent, but I miss my old life terribly. I’m so sad. I’m 26 and can’t do anything except sleeping, staying home. I just want to be free, to live normally, to be happy again…
This disease is so much more psychological than anyone WITHOUT the disease realizes. It’s a major hit to self perception/confidence, as everyone thinks we either cry all the time, are hung-over, stoners, or don’t take care of ourselves. Be strong, tell people about your disease! Tell them when it hurts, when you know it looks bad. Be who you are, unapologetically. Come to us for support and let’s solve this dilemma together!
I am afraid I will have to live with this painful condition for the rest of my life. Either I can give up or stay strong and see what tomorrow holds…
Believe me, after almost 40 years with this condition I should have thrown the towel in long ago. I just keep searching and searching until I find the right doctor and/or the right medication. Promise me you won’t give up. We are all here to support one another. Feel free to drop me a line anytime when you are feeling down and hopeless. There is hope!!!
Until I joined this dry eye forum, I felt very alone with my eye pain. I learned so much from other people who were going through similar challenges. Two important lessons that I learned while searching to help myself were:
- A remedy that cured someone else’s eye problem didn’t necessarily cure mine.
- There were remedies that were so simple; I didn’t pay attention to following them.
I was extremely nearsighted for most of my life and comfortably wore hard contact lenses from the time I was 11 years old. I painted detailed illustrations without any problem.
As a 55-year-old woman, I could spend a lot of energy wishing my eyes were the same as they were even five years ago. Around the time shortly before my father died and my separation after a long marriage, I began having trouble seeing. I’ve often wondered if the symptoms I had at that time were related to dry eyes.
My cataract surgery became an ordeal when I had to go back for yet a third surgery – a cortical chip was left behind. Then there was a capsulotomy, which was a laser treatment for the edge of the cataract that intruded a few months later.
But it was the PVD that was very upsetting for me. Every moment of my day was challenging because of the all the fog and junk in my vision.
My own son told me, “Mom, I can see why you say things are foggy. Your eyes look clouded!” I often wished I could pop out my cataract lens implants and clean them.
Living with fog and floaters was one thing, but when I had constant pain it was torture. How does a person live with pain every moment of their day? I know many people who do and I am heartsick imagining it.
Within the last month, I’ve experienced improvement with my dry eye condition. I still have dense floaters and fog, but the pain has lifted and my attitude has changed. All I can say is that I am so relieved.
I accept now that my vision is adequate to live my life and is something I will continue to adjust to. Being free from pain is a gift that leaves me crying with gratefulness.
My improvement began when I was at a very low point. The remedy I thought would help me the most was serum tears (made from my own blood). Unfortunately, I had a bad reaction and thought that the tears were made incorrectly or compromised.
After writing about how discouraged I was, a friend from the on-line forum reached out to me. Her name was Susan and we corresponded a great deal to support each other. Susan introduced me to Judi who was the leader of a dry eye support group in another county. Judi had asked Susan if she could contact me because she was very concerned about my serum tear reaction. Judi sent me a lot of information, spoke to me on the phone and we emailed each other.
Two months ago, I traveled to meet Judi and attend one of the dry eye support group meetings where she was a leader. It entailed about five hours of driving and luckily Susan’s husband drove us to the meeting. The time went by easily with them and I didn’t mind the outing.
The meeting was informative. But my reason for being there was to meet and personally thank Judi for helping me. After the meeting was over, Susan took a picture of Judi with me.
Because Judi had found a lot of success with serum tears, I decided to try again. Two weeks ago, I had new serum tears made from another batch of my blood. This time the tears were 100% serum, instead of 20% like I had the first time.
After putting only one drop in each eye, a few hours later I experienced weird sensations and my eyes felt much worse. It took about five days before my eyes felt better and I did not use any more serum after that.
I was disappointed that the remedy I was certain would be my “cure,” was not the case. It was so frustrating; instead of serum helping, it was hurting me!
My improvement began because of Judi and her willingness to guide me. Such simple things made a difference and weren’t very difficult for me to implement.
Drinking a lot of water (at least 10-12 glasses a day) seemed to make the biggest difference. And then there was a certain technique of using an eye gel at night.
Judi had explained to me on the phone that her “gel remedy” was something she discovered on her own and was very proud of; it helped to combat a condition with a very long name that made dry eyes worse.
The condition was known as Lagophthalmos, which in simple words means that eyelids aren’t fully closed when a person is asleep. Judi asked me if someone could look at me when I was sleeping so I’d know whether my eyelids were closed. The thought of asking one of my sons to do that seemed kind of strange. Then she asked me if my eyes hurt when I woke up in the morning; I told her that they most certainly did.
Her remedy involved using Genteal Gel (I tried another brand without results). I always wondered why anyone used gel eye lubricants. They blurred my vision and didn’t bring any kind of relief.
The trick was to get my eyelids to stick together so they would remain closed when I was asleep.
Judi said, “Be absolutely sure not use any other eye drops for at least half an hour before going to bed. You want this gel to be very sticky. Put it in and close your eyes tightly. After five minutes, your eyelids should stay stuck together.”
I followed what she said, and woke up in the morning without pain. This lady was a miracle worker!
I wrote to her and said:
On Sep 13, 2014, Judy wrote:
I was so excited to share with you that I had some better days with my eyes recently. The Genteal gel at night is helping and especially all the water I’ve been drinking. I couldn’t believe that yesterday there was a moment when my eyes actually felt almost normal!
I’m so glad I was able to meet you. I know I’ll be writing about that day. Thank you again so much, Judi!
I am so glad that you are finally seeing some improvement in how your eyes are feeling. One of my greatest joys in life is knowing that God has chosen me as the vehicle to share His blessings given to me with others in need and in pain. I pray that this gift never ceases and He continues to find ways to use me to make a difference in others’ lives in whatever way that might be.
I am thrilled that the Genteal Gel is working for you. I am surprised how many people are never diagnosed by highly-trained eye specialists about this condition. When I was first diagnosed with Lagophthalmos my reaction was, “Oh, no! I had another incurable disease.”
I was told I could have weights sewn into my lids. Then I was told to tape my eyes shut with an X over my eyes at night, which tore the tissue at my eye because it is so delicate. I was told to cover my eyes with saran-wrap at night, which was horrible.
I sat and prayed one night and in the morning my friend suggested I try Genteal Gel. She didn’t mention the way I was to use it, by not putting other drops in beforehand – or holding lids closed till it dry. But somehow God showed me the way.
HE SEEMS TO ALWAYS MAKE A WAY WHEN THERE SEEMS TO BE NONE.” AND SO BETWEEN THE GENTEAL GEL AND THE AUTOLOGOUS SERUM, HE HAS GIVEN ME THIS GIFT OF FREEDOM FROM PAIN AND I AM DOWN TO 4 DROPS A DAY.
I can’t tell you how grateful I am that I can share this. I pray that you can get serum that helps you.
Thanks again for the great news and I feel your condition will continue to improve and pray God also uses you to share His blessings going forward.
Judi, just for fun, I’m sharing what was doing on my computer tonight; it’s one of my songs. I’m a passionate songwriter. I don’t market or sell anything yet but one day I will. 🙂
Ps. When my eyes are better, it will be much easier for me to reach out to find a larger audience. I see God wanting me to have this healing time and it has enabled me to stay close with my children and focus on creating music every day. I have over 60 song arrangements now.
Wow, what a voice you have – it sounds angelic!!! I look forward to listening to it all… Such a gift and blessings!
Thank you so much for helping to lift me up. The depression that resulted from my eye pain has been overwhelming. For this past year, I’ve just stayed inside a lot and have been reclusive.
I didn’t sing for 30 years and after my 5-year-old son died in 1992, I never thought I’d sing again. I picked up my guitar four years ago and it healed me and changed my life. I believe God gave me music to share, to heal others and myself.
I don’t consider myself to be a great singer. I’ve worked hard to improve so I can share my songs with the world. Two years ago, I could hardly keep my pitch. It’s a process. Singing for me is all about opening my heart and allowing my emotions to be free. Your compliments mean a lot to me.
I’ve found a lot of joy with my writing and music. I am peaceful and try to help others who suffer with grief and never imagine feeling better. I’ll look forward to seeing you again in January when Susan and I drive out to the support group meeting again.
Few can understand the debilitation the loss of a child causes. We lost our son at 42 with two young children to lung cancer, another unexplainable debilitating tragedy.
Oh Judi, I am so, so sorry about your son! Now we are not only joined because of our eyes, but also as bereaved mothers.
I could tell when I met you that we would be friends – You are so beautiful and your smile is so kind and loving. Once again God, in His wisdom has brought another special person into my life – there are no mistakes.
Love and blessings, Judi
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