#16 MY JOURNEY IN SIGHT

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.

This photo was taken when I attended a dry eye support group meeting. It wasn’t in my area, but I’m glad I went. I met and thanked a wonderful woman named Judi, who really helped my eyes improve with her advice.
This photo was taken when I attended a dry eye support group meeting. It wasn’t in my area, but I’m glad I went. I met and thanked a wonderful woman named Judi, who really helped my eyes improve with her advice.

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:

  1. 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.
  1. 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.
  1. 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.
  1. 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).
  1. 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 share a picture from my younger days. There’s no going back! I can honestly say that now that my eyes are better, my life is wonderful again.
I share a picture from my younger days. There’s no going back! I can honestly say that now that my eyes are better, my life is wonderful again.

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!!!

Many of the people in my dry eye forum dream about feeling “normal” again. I’ve accepted that my “new normal” is okay for now. I am not cured but it’s certainly livable.
Many of the people in my dry eye forum dream about feeling “normal” again. I’ve accepted that my “new normal” is okay for now. I am not cured but it’s certainly livable.

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:

  1. A remedy that cured someone else’s eye problem didn’t necessarily cure mine.
  1. There were remedies that were so simple; I didn’t pay attention to following them.
    Despite my dry eyes, I’ve continued to illustrate and have had an excellent year.
    Despite my dry eyes, I’ve continued to illustrate and have had an excellent year.

    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.

    I can open my eyes again – somewhat.
    I can open my eyes again – somewhat.

    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.

    Susan and her husband, Bill, were so lovely to spend the day with.
    Susan and her husband, Bill, were so lovely to spend the day with.

    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!

    Blood Draw 2My 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 can open my eyes again – somewhat.
    I can open my eyes again – somewhat.

    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!

    Hi Judy,

    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

  2. Judy & Judi

    © Judy Unger and http://dryeyediaries@wordpress.com 2016. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Judy Unger with appropriate and specific direction to the original content.

#14 MY JOURNEY IN SIGHT

For a week after using the serum tears, I was deeply depressed. My eyes hurt and my vision was foggy even though my eye doctor said my eyes looked “fine.”

Originally Posted on September 12TH, 2014:

For a week after using the serum tears, I was deeply depressed. My eyes hurt and my vision was foggy even though my eye doctor said my eyes looked “fine.” I began to lose hope of ever conquering my dry eye condition and reclaiming the “normal” eyes I once had.

I had definitely lowered the bar a while ago. This wasn’t about acuity (vision); it was about living with discomfort and constant pain. I could accept poor vision, but not pain.

My online dry eye support group knew exactly how I felt. I plan to write more stories about this group. It is comprised of men and women, young and old. One woman has lived with her condition over 25 years already. Many of the new members want to pull their eyeballs out!

What I continue to find so beautiful, is how this group is filled with hopefulness. When someone is overwhelmed, another member suggests things that might help him or her.

After my serum tear fiasco, I poured out my heart and received many caring and concerned messages.

My new friend from this group named Susan was very appreciative of my story. She had just gotten a prescription for serum tears because I had encouraged her to push her doctor for it. Now she wasn’t sure whether to try them after hearing about what I had experienced.

Susan and I began writing daily and I was touched by how caring she was. It turned out that she didn’t live too far from me. That was amazing since the online group was international. Susan had suffered with dry eyes for about ten years. She had attended several meetings of a dry eye support group in Orange County, which was about two hours from where we lived. The leader of that group was a very knowledgeable person and quite willing to help others. Her name was Judi.

Susan had recently spoken with her and shared my story; now Judi wanted to get in touch with me.

I was open to it.

Judi began by emailing me a ton of literature and eventually we spoke for an hour on the phone.

Her messages resonated with wisdom, knowledge and incredible compassion. If I allowed an image to form, it would be of seeing myself lying on the ground. Suddenly gentle hands caressed me and sweet messages of hope were whispered in my ears. With the help of those hands, I managed to pull myself back up.

What stood out to me in Judi’s messages were several things. Certainly she had an incredible amount of knowledge. But what really helped me was when she acknowledged the psychological impact of my condition and reassured me that I wasn’t going crazy.

You are not crazy or a hypochondriac; they just don’t have the answer or know how to treat you. God can make a way when it seems there is none. Don’t give up.

And her mentioning God really touched me.

No one can understand how bad the pain of dry eyes can be unless they have experienced it. We have more nerves in our eyes than anywhere else in our bodies. I can remember a young man, many years ago that wanted to have his eyes removed because the pain was so bad; he was in his 30’s. That was so very sad and I wonder whatever happened to him.

I have also struggled with anxiety and depression my whole life, especially after the age of thirty. I have recently learned that anxiety and depression makes the pain of dry eyes worse – and the pain of the dry eyes makes the depression worse. It is a vicious cycle.

I can say that my struggle started 14 years ago and my eyes are better now than when I started but also I have learned to be much more proactive in treating them. It always drives me closer to God, to depend and trust Him – to spend time with Him – to be grateful for His grace and faithfulness in all areas of my life.

Judi

After about two weeks, my eyes recovered. They weren’t “normal,” but perfectly adequate for all the things I do. The pain subsided and helped me appreciate how much better I was. I was relieved that I was able to perform at my niece’s wedding above.
After about two weeks, my eyes recovered. They weren’t “normal,” but perfectly adequate for all the things I do. The pain subsided and helped me appreciate how much better I was. I was relieved that I was able to perform at my niece’s wedding above.

Twenty years ago, I helped bereaved parents, siblings and grandparents as a support group leader for an organization named Compassionate Friends.

Whenever I have written about the things that helped me to survive my grief, I usually mention how I benefitted from support groups. “Hold hands with other people who are also suffering. Take baby steps together,” is often how I frame it.

It seems like I followed my own advice when my dry eye condition began to overwhelm my life.

One of the hardest things for me as a leader at Compassionate Friends was helping the newly bereaved.

They were in shock, bewildered at how their “normal” life had suddenly disintegrated. The grief journey they were beginning seemed like a horror they could never survive and dying to join their loved one seemed far easier.

Part of reason it was so difficult for me (back then), was because I was on the same journey and I couldn’t really say that it would get “better” with honesty. The journey from where the hell began was arduous and excruciatingly slow. The best that could be hoped for was to hold hands with others and hang on.

What I gained from helping other people with grief was a sense of purpose. It made me feel that all of the suffering I went through strengthened me. Now I could do something useful, my son was an “angel on my shoulder,” hugging and holding me as I comforted other people.

It was when Judi reached out to help me that I realized how I was getting something back for all that I had given.

The experience was quite spiritual for me.

As horrible as bereavement was, I have looked at it as a pathway toward enlightenment. Grief took me away from God and eventually I found a way back. I try not to imagine that God orchestrates all the misery in this world. Because of my eye pain, I know I have gained far more compassion and depth.

i just can't see
These are lyrics from my song “Wonder Why.” I recently finished the vocal and guitar additions for my song.

I know that things could be worse and things could be better. The number of painful diseases that exist in this world are endless and I cry for anyone who suffers. Even with dry eye disease, there are people whose eyes are disfigured and scarred, who cannot drive or face daylight at all.

So many things happen in life that I do not understand. For myself personally, I strive to stay positive as I follow my dream.

I keep smiling and there’s a reason for that. It’s because my eye pain has not stopped me from arranging songs, recording vocals and writing new music. I even began composing a new song last week.

I am currently working on a large illustration assignment that is going very well. Somehow, I always manage to find time to write for my blog.

I am very close to all three of my children. I have two sons who live with me (17 and 23) and they keep me busy shopping to fill our refrigerator. I play tennis and I swim several days a week.

How is that possible?

My explanation is that there are angels are all around me.

Coral Rose

© Judy Unger and http://dryeyediaries@wordpress.com 2016. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Judy Unger with appropriate and specific direction to the original content.

#13 MY JOURNEY IN SIGHT

My serum drops arrived on a Monday morning. My son burst into my bedroom to announce, “Mom, there’s a big package at the door for you!”

This picture was taken on the day my blood was drawn.
This picture was taken on the day my blood was drawn.

This was originally posted on September 9th, 2014:

My serum drops arrived on a Monday morning. My son burst into my bedroom to announce, “Mom, there’s a big package at the door for you!”

Only a week before, I had driven for two hours to a distant facility to have 21 vials of blood drawn that would be used to make these revolutionary eye drops.

Of course, the dry ice was far more interesting for my son as I removed the seven precious bottles of serum. I put six in the freezer and one in the fridge. I wondered how long it would be before I could start squeezing the bottle and putting the tears in my eyes.

Serum Tears and box

I looked to see if there were any papers in the box but there were none. There were a few instructions on the bottle telling me to discard it after a week and to keep it refrigerated at all times.-

By late afternoon, I checked the bottle in the refrigerator and it wasn’t frozen anymore. It was time to use them! The drops that went into my eyes were cold, slimy and kind of shocking. They were definitely refreshing. I imagined my eyes were soothed every time I blinked.-

The instructions on the bottle said to put one drop in each eye every two hours. I didn’t follow a tight schedule, but used them whenever I saw the time had gone by. By bedtime, I had used them at least 4 times.

I could hardly believe that bottle contained my own body fluid!

Serum bottle

That first night held a momentous event for me. I performed for the first time in eight months.

Before my dry eye condition overwhelmed my life, I used to perform weekly at the Open Mic at Kulak’s Woodshed. From the moment I walked in, everyone there welcomed me back with open arms.

Singing in front of an audience was still difficult with my eye discomfort. Before I began performing, I mentioned to the host that I had “eye issues” and it was difficult for me to open my eyes.

Playing at Kulak's 12

Unfortunately, everything changed the next day.

Just after I woke up I noticed my vision was cloudy. It was rare for me to go back to sleep, but I did so because I thought perhaps I was just tired.

By evening, I finally acknowledged that something was wrong as the fog in my eyes became more and more dense.

Now I was far less excited to continue putting the serum drops into my eyes. I wondered if perhaps this was something I needed to stick with. Maybe my eyes were healing this way?

This post on my Internet Dry Eye forum really gave me a lot of hope.
This post on my Internet Dry Eye forum really gave me a lot of hope.

I posed my question to the people on the dry eye forum I belonged to. One woman responded and said she had experienced a little discomfort at the beginning but after that she was vastly improved. I continued using the drops.

The next day, my pain was even more intense. Clearly this was not normal. I tried calling the pharmacy that made them. Their phones were not working.

I felt so discouraged and disappointed. (Eventually, I did reach them and they took down information from me to look into whether my drops had a problem. I never received a call back.)

It was very hard for me to concentrate and do my illustration work. All I wanted was to be in the place I was before I began using the drops. About a year ago, I was dealing with this level of severity almost every day. Now I appreciated my progress.

By Friday, I had already stopped using the tears and prayed things would get better. A friend told me that my eyelids and face looked swollen. I decided that I should to be checked by an eye doctor.

But when I called, I was told there were no appointments available.

I continued to insist that I needed to be seen and was given a lengthy evaluation over the phone. I listed my symptoms and the receptionist seemed unconcerned. She still would not give me an appointment so I told her I wanted my doctor to call me back.

Two hours later, the receptionist called me back and said; “Your doctor said she doesn’t need to see you today.”

Butterfly of death

I was livid! I felt smoke coming out of my ears and eyes. At that moment, I hated my doctor.

I took a deep breath and continued to insist upon an appointment. My heart was pounding while I was put on hold. The receptionist finally came back on and said coldly, “Okay, you can come but you’re going to have to wait a very long time.”

I hung up and began crying. I decided to call a good friend before leaving in order to calm myself.

My friend used to work in a doctor’s office. She said, “Don’t take it personal. You were being screened out and that’s done regularly. Your doctor probably wasn’t even told about your situation.”

Scared Eye

An hour later, I was in the waiting room. I was prepared to wait a long time and certain I had done the right thing by coming in to get checked. I was the last patient before lunchtime and the examining room area was deserted. Finally my eye doctor came to get me.

I told her how much I appreciated her fitting me in during lunchtime; I didn’t want to appear angry.

I described the pain and fog that began only a day after using the serum tears. My eye doctor said, “I told you serum tears weren’t a cure.”

But I had many questions for her because in the last few days I had learned a lot. It turned out that my bottle was only a 20% solution and I had heard that wasn’t nearly as effective as 100% serum. A reaction was unheard of.

She replied, “Well, if they bothered you with 20%, then it would be even worse if they were 100%.”

I asked her if the saline could have bothered me. She said it definitely wasn’t the saline. But it did look like I might have contaminated the bottle. I had touched it to my eyelid whenever I put the drops in. It sure would have been helpful to me if there had been clearer instructions.

Did I have an infection? This cornea doctor would soon find out.

As she put the yellow dye into my eyes, I gasped because it burned so much. Only a moment after looking with a magnifier, she announced in a chipper voice, “I don’t see any problem at all; your eyes look very good actually.”

Now I felt embarrassed for insisting upon this appointment.

I walked out of the building and didn’t know what I was feeling. I was glad I didn’t have anything wrong, but at the same time I began to doubt myself. I was such a demanding patient.

And my butterfly of hope was smashed to the ground.

Facebook Post on Blog

The support I received from my Internet group helped me so much. Only the week before my tears had arrived I had rallied to encourage another woman to get them prescribed by her doctor. After my ordeal, this woman was very concerned about whether to move forward to get them.

She and I began corresponding privately. I had made a new friend and her name was Susan.

Susan and I

To be continued . . .

Playing at Kulak's 11

© Judy Unger and http://dryeyediaries@wordpress.com 2016. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Judy Unger with appropriate and specific direction to the original content.

#12 MY JOURNEY IN SIGHT

Sometimes, if feels like my eye problems have taken over my life. I seldom perform with my guitar anymore and prefer to be in my apartment. My interest in traveling has disappeared.

Spider and the Eye

Sometimes, if feels like my eye problems have taken over my life. I seldom perform with my guitar anymore and prefer to be in my apartment. My interest in traveling has disappeared.

A few weeks ago, I described my struggle with eye pain and subsequent depression to my hypnotherapist, Connie. I said, “It’s like I’m wrestling with a treacherous white spider.”

I told her how when I had the upper hand (where I had distracted myself from the pain), I stood on top of that ugly spider and shouted, “You are not going to wreck my life!”

And then there were those other moments.

I could see myself lying prone on the floor held by the painful grip of that “white spider of sadness.” I was discouraged and overwhelmed; overcoming it felt hopeless. And I felt like I was a failure for not being able to accept it.

Connie listened thoughtfully and then she said, “Let’s talk about acceptance. How would you define it?”

The first thought that came into my mind had to do with grief. Healing from my son’s death took a long time and was certainly the hardest thing I ever had to accept. I said, “My struggle with grief was much harder than this. For years I was angry and certain my life was ruined. But with healing, I have truly accepted that he is gone and will never grow up. I’ve chosen to look at him as my angel. I can now see that his death didn’t ruin my entire life and even had a positive affect upon me in some ways.”

Then I mentioned a few words that came into my mind to define my acceptance. They were: resignation and surrender. I battled grief for many years and with my surrender came peace.

Then I said, “Maybe I can’t accept my eye pain because I’m still searching for a remedy that will help me!”

At that moment, I felt certain that was the reason I was struggling to accept my condition.

This butterfly is a Rose Swallowtail. I love to add my own artwork to stories on my blog.
This butterfly is a Rose Swallowtail. I love to add my own artwork to stories on my blog.

Although I was miserable, my dry eye doctor told me I had to wait several months before making an appointment with her in order to give the current remedies time to take effect.-

I was on hormone replacement therapy and began using a testosterone compound cream on my eyelids. I prayed these two things would help alleviate my dry eye pain. The theory behind taking hormones is that menopause causes dryness.

Unfortunately, I suffered even more because the testosterone cream I rubbed on my eyelids caused a burning sensation in my eyes. I diligently tried not to rub my eyes but it didn’t make any difference. My eyes were on fire!

It became difficult waiting to see my doctor. I plodded through my days trying to distract myself from the pain and fogginess in my eyes.

Then I became extremely emotional and edgy. When I had a blow-up with my son where I was shrieking at him, it was really out of character for me. I was always able to hold my emotions in check and although I wanted to express myself more now – flying off the handle was not my style.

Sunset 3

I had been taking hormones for 2 ½ months. It was clear they weren’t helping and perhaps were actually contributing to my moodiness. I decided to discontinue them. I still used the testosterone cream every night, as well as Restasis eye drops, compresses and eyelid wipes.

Finally my eye appointment arrived. I was determined to convince this doctor to give me a referral for serum tears. It wasn’t simply that my HMO would pay for it – it was because having those tears made from my own blood was a complicated process. I knew a woman who travelled to several far away locations to get them because they made such a difference for her.

When my doctor came into the room, she was very serious. This dry eye specialist was very professional and I could tell she cared even though she didn’t smile.

I updated her on the regimens I was following. Ironically, tears streamed down my cheeks when I shared how my life was horribly affected by my dry eye condition.

I became very emotional when I said, “I’ve fallen to the ground three times since I last saw you. It wasn’t because of my vision. It was because my eyes hurt so much that I can’t really open them to see where I’m going.”

I began sniffling and said, “I wish I could have seen you sooner. I’ve been waiting months for this appointment!”

After she examined me she said matter-of-factly, “I’m going to try something on you today that has helped some of my other patients.” My curiosity piqued – what was she going to do now?

Spider and the Eye B&W

She asked me to rest my chin and press my forehead against a large piece of equipment. Then she opened a bag of tools that held needles and tiny tweezers. My heart pounded as she explained how she was going to open my tear glands and squeeze out the clogged oil.

She began by poking my upper and then lower lids repeatedly with a sharp tool. She said, “I can see your oil is very thick. If this helps, you can come back again and I’ll do it more.” All I could think of was how I wanted to run away forever from this hospital!

I flinched with every sting. As she worked she also pinched and squeezed my eyelids; I was gasping and hoped it would be over soon.

My eyes were sore and dripping as I walked to my car. I prayed it would help. But as I drove home, I was elated.

It was because she agreed that I could get the serum eye drops. Within a week, I would be receiving the information for them.

Eye on Facebook

I subscribe to a support group for dry eyes on Facebook. There are approximately 150 members and most everyone is going or has gone through so much of what I have. Many members bemoan how nothing the doctors gave them helped, but occasionally someone mentions a miraculous moment of relief they found.

About six months ago, I asked if anyone on that forum knew about serum tears. No one replied or mentioned using them. That told me that it was definitely a tough remedy to obtain. But a “friend of a friend” spoke to me about them and I definitely wanted to get them.

After my recent appointment, I wrote an update about my eye condition on this site. I ended my update with these words:

For me, the worst thing about this condition for is depression. I don’t want to live this way for the rest of my life and it gets me down. I try to stay hopeful and will certainly share how those serum tears work once I get them.

After I wrote my update, I received this comment:

Judy, my ophthalmologist told me about what you’ve described and said this: “Doctors USED to take needles and open up the glands and then express the clogged oil but they found out that it did damage to the oil glands so that isn’t done anymore.

And then that same day, there was a post from a woman who had used the serum tears. She wrote:

I just wanted to share: For the last five years I’ve suffered terribly with severe dry eyes.  gave me my life back. I’m not exaggerating. It was mentioned by the fourth doctor I saw as a last resort. It should have been at the top of the list.

Here were more comments that followed her post: (my words are black and bold)

Why are doctors so hesitant to try them? Do they have a lot of bad side effects?

They don’t. Over and over, doctors kept pushing the pharmaceuticals even after I explained that they didn’t help and caused extreme irritation. This is what happens with medical treatments that are proven BUT have no pharmaceutical company to promote them – doctors don’t hear about it. The serum drops changed everything. I’m so glad I didn’t give up!

I believe it’s mostly just lack of familiarity. Doctors don’t read the studies so they aren’t aware how good serum drops are for healing the ocular surface, nerve damage repair etc.

I was ready to pluck my eyes out. I’m not exaggerating. It’s only been a week and I would say there has been at least a 25 percent improvement. My eyes are definitely functioning better. The associated Blepharitis has dramatically improved, as well. I am thrilled that I tried this.

Well, I have been trying to get my HMO to prescribe them for me. I had to try a lot of useless remedies first but now I’m going to get them soon. I even met and spoke to another woman who told me that they really helped her. So thank you for sharing and I’m so glad you found relief!

© Judy Unger and http://dryeyediaries@wordpress.com 2016. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Judy Unger with appropriate and specific direction to the original content.

#11 MY JOURNEY IN SIGHT

The present has been more challenging than I want to admit because I unfortunately live with chronic pain in my eyes. I deeply want to find acceptance of my condition but pain is hard to live with.

This was originally posted on May 8th, 2014:

Sometimes, it’s amazing for me to imagine that four years have passed since my rebirth at the age of 50.

Many changes have occurred in my life since then. With the finality of my divorce, I have settled into a routine of keeping close tabs on my three children as I continue to follow my dream. The deaths of my parents within two years, as well as the memories associated with living in my childhood home have me living in the past at times. But I also see my future very clearly.

I am not in any hurry to get there. There are so many wonderful blessings going on in my life that I want to focus on.

The present has been more challenging than I want to admit because I unfortunately live with chronic pain in my eyes. I deeply want to find acceptance of my condition but pain is hard to live with. I’ve continued to search for remedies without finding any relief.

In some ways, I see my suffering as a form of grief. It has come with all of the stages that I am quite familiar with. When I first experienced PVD (posterior vitreous detachment) after my cataract surgeries – I was in shock. Since that time, I’ve alternated between depression and numbness. At that time, I was not living with pain – only foggy vision.

But that has changed. Recently, I’ve noticed that I’m angry and irritable because of the unrelenting pain.

I closed my eyes

Just like grief, I decided to see if I could find others that might have wisdom to help me. I discovered an online support group for people suffering with (get ready for a complicated name): Chronic Dry Eyes & Chronic Blepharitis.

I have both of those conditions and Blepharitis refers to inflammation of the eyelids. This group has helped me tremendously. For certain, it sure helped to commiserate with others suffering from eye pain. And it was fascinating that so many of them had gone through the same experiences with doctors as I had. Most of them went into great detail about the remedies they had tried.

I am going to share information that I’ve learned by summarizing many messages. All of them tell a very sad story. I’ve organized them into one conversation, but these comments happened over time and came from many different people. Anything I’ve written will be in black/bold.

I just joined this group. I’m not sure where to start sharing. I can say that I know this is a place where I’ll find understanding. I have had my condition for over two years. I’m 54. Three years ago, I had some problems seeing and was diagnosed with mild/moderate cataracts. I had surgery for them and have suffered from many complications. This dry condition is horrible and those surgeries made my problem worse.

My eye condition is really affecting my quality of life. I’ve been miserable living with constant pain. I have been using steroid suave, taking flax and fish oil, tried plugs in my ducts; use hot compresses and Restasis eye drops.

Recently, I went on hormone replacement therapy to see if that could make a difference. It has been a month and nothing has changed yet. I’ll let you know if it helps! I miss feeling “normal.” Every day I struggle with fogginess and pain.

I’m on hormones too! The only time my eyes feel “good” is when I’m asleep or have hot compresses on them.

I’m thinking there is no such thing as just chronic dry eyes. I think we should tell our docs not to say, “You have chronic dry eyes and I’m giving you Restasis. Just go die for a year.” I’m glad I had the brains to go to a neuro optho on my own after 6 months.

My eyes drive me nuts. I take fish oil, use Restasis, use over the counter drops like they are air, sleep with a wet rag over my face, and have plugs in the ducts – and still it is like this.

My eyes have been bad again this week leaving me very depressed and unable to work. I think I’m close to losing my job. The worst thing is I don’t feel I’m getting the help I need. My doctor doesn’t know what to do for me.

My eyes hurt all the time, my left eye is dribbling and goopy, and my vision really sucks. This stinks. OK, rant over, back to work. I just had to say it to somebody.

Have you tried using ice cubes to stop the burning? There are those eye masks you can put in fridge or freezer. You can use cold or frozen cucumbers too.

My eyes will not stop. I sit here with wet cloth on my eyes and also just pouring the drops in. Both eyes still killing me. Going to blow a gasket here.

My eyes have decided to join yours now. SO miserable!! Makes me feel sick, headaches, light is painful. The pain is like a combination of scraping sand and onion juice.

Dry eyes

I’m so sorry. I understand it can be horrible pain & discomfort is so hard. Can you use preservative-free lubricating drops that do not have Benzalkonium Chloride in them? That can aggravate some people’s eyes.

I didn’t know that and my doctor only recently told me. I was pouring in artificial tears that could have made my condition much worse!



I saw an eye doc and he just said dry eyes and gave me Restasis and I also got the tear duct plugs; neither work
.

I’ve been there many times myself. It’s a process to figure out what helps you and what doesn’t. There are many forms of Blepharitis and you need to know what type you have.

My doc told me I was his worst patient, I have the plugs and I’m on the Restasis and I had to be on the Steroid drops for almost a year to just survive. But I’ve been eating really healthy trying to take the best care of myself.

What exactly have you been diagnosed with?

The doctor just said I had dry eyes; that was the diagnosis.

Telling you that you have dry eyes is like a cardiologist telling you that you have heart trouble! It might be accurate in some sense but it is NOT A DIAGNOSIS. Dry eye is a convenient catchall term for a whole lot of things (many of us have more than one issue).

My doctors are willing to offer me a Vitrectomy – which is totally risky! I just wish I didn’t have the discomfort and pain. I’ll keep trying things and will definitely share anything that works.

I am new to the group. Thanks for the invite. Have had dry eyes for years. Not so much for treatment. My doctor put me on Doxycycline for several months, but I did not do my homework, and really don’t know if there is any good research. My gut wouldn’t handle it and shortly after I developed a parasite infestation. Maybe the antibiotic changed the gut flora?

Your words are very meaningful for me and I am so sorry about what happened on the Doxycycline. I was given a prescription for it also. I decided to wait on it because I’ve had stomach issues in the past. I’m glad I followed my “gut” feeling! I started hormone replacement therapy instead. Thank you for sharing and I hope something brings both of us relief soon.

I have aged at least three years in the last 5 months. I now look older than I am and I always looked at least 5 years younger before.

I feel that way too. I look at pictures before this eye pain began. I was always smiling and youthful. I walk around now with my eyes like slits, trying to cope with constant pain. I pray it won’t be this way for the rest of my life!

Painful eyes

I learned that eye pain is considered particularly excruciating because our eyes have so many nerve endings.

I was a terrific advocate for my children and parents. But it has been difficult for me to advocate for myself because I honestly feel like I am ill and in too much pain to think clearly.

Because my eyes have been worse lately and nothing has offered relief, I’ve decided to pursue a remedy that has intrigued me from the very beginning – serum eye drops.

I had heard about miraculous results and even one of the doctors at my HMO mentioned it. These eye drops are created from my own blood. Blood is drawn and placed into a centrifuge to create the serum. It is packaged at a pharmacy and placed in the freezer in packets. The process must be done every 3-4 months.

The serum is expensive and not covered by insurance. But the doctors who would treat me do take insurance. I’ve requested my HMO to refer me there and am waiting for their answer. If they refuse, I will switch my coverage because my divorce is final and I have that option now.

There are only a few places in the world where serum eye drops are available. The center that does this is only two hours from where I live. It is affiliated with a large university, so it isn’t like something completely out of the box.

I realize the Internet is full of misinformation, but I have been reading a lot to learn more about the condition I have. It seemed like serum drops promoted healing and relief.

Clicking on this makes it larger
Clicking on this makes it larger

But then, I received a real sign. I spoke to someone who actually used them! A good friend called me and asked me if I would like to talk to someone she knew who suffered with severe dry eyes and had found relief. I was more than ready.

The woman’s name was Celia and she was very kind on the phone. I had a paper and pencil handy and wrote out all of her suggestions. There was a long list. I wasn’t sure about whether I’d be willing to wear motorcycle goggles and even found that to be tragically humorous. But I didn’t rule it out.

Celia talked about the serum eye drops. She said, “Getting them is very inconvenient and they are expensive. But they make such a difference and I can’t live without them.”

As if that wasn’t enough for me, the very next day an acquaintance left a message. She and I had played tennis a few days before and I had a lot of trouble that day keeping my eyes open. I was amazed that I was able to force myself onto a tennis court the way I felt.

Her message said that she had some information that might help me with my eye condition. I called her back.

She said, “I saw my ophthalmologist and told him about you.” With breathless excitement she said, “Do you know about serum eye drops?”

I let her know I had been considering them and was amazed at the coincidence that now two people were eager to share this information with me. There were hurdles I’d have to go through in order to do this.

But I wanted to hold onto my hope that something was going to help me heal and feel better.

To be continued . . .

Hopeless eyes

© Judy Unger and http://dryeyediaries@wordpress.com 2016. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Judy Unger with appropriate and specific direction to the original content.

%d bloggers like this: