#17 MY JOURNEY IN SIGHT

Those needles do prick and sting a little. I thought I’d give acupuncture a try but I’m not sure I’m going to “stick with it.”

Originally posted on March 15th, 2015:

I was so touched when a good friend sent me an email wondering if I was okay because I hadn’t posted to my blog for almost a month. I was teary as I typed her a message back:

It’s so sweet of you to think of me. I’m very, very touched. Perhaps when I had deep stresses like my parents’ deaths and my divorce – it helped to express my sadness through writing.

But lately I’ve been quite depressed. I’m wrestling with the dark witch and trying to figure out what to do next. I feel like I can’t allow myself to be sad since I am free now and have so many blessings in my life.

It’s because of my eye problem.

I continue to do music, which definitely comforts me but most of the time I’m struggling with pain in my eyes. I am irritable and distracted by pain, so upset that I can’t seem to overcome this. I feel like my journey was about rediscovering joy and I feel like it’s hard to share my honest feelings.

Love you, my dear friend. I think of you often.

On the last part of this series, I was very hopeful about improvement in my condition because of drinking a lot of water and using eye gel at night.

I decided to give serum tears a third try. I had a batch in my freezer and this time I would do something different. My friend, Judi was a leader of a dry eye support group and told me there was another method I could try where the serum tears wouldn’t be as irritating.

She said, “There’s a doctor who recommends using a steroid eye drop for a week before using the serum. The steroid calms down your eye and without inflammation, the serum can have a healing effect.”

I had my doctor look into this and she was willing to prescribe a steroid eye drop for me. Unfortunately, after one day my eyes began feeling foggy and painful. It felt like I was putting poison in my eyes – so I stopped.

I was disappointed, but not like I was the first time because I didn’t have high expectations.

Unfortunately, it took weeks before my eyes felt better and that was very tough.

I try hard not to be affected by my struggles with eye pain. I want to keep looking for something that might help me. I decided to try an acupuncturist who was highly recommended by a good friend – at least that wouldn’t set me back like the steroid eye drops did.

Her name was Veronica and she came to my house. I enjoyed talking with her as she worked on me. I asked her to take pictures and she did.

After our first session, I went for a walk and marveled – it felt like my vision was clearer and I could open my eyes wider than usual. I was thrilled and planned to write about it. But then I caught a cold from my son and my eyes worsened. But I still was very hopeful that my eyes were improving.

Veronica came for our second and third session with determination to help me. At our first appointment, she recommended that I try at least four sessions to give her a chance to make a difference. Each time she tried out different things and asked other instructors at the acupuncture institute where she worked for advice.

After our fourth session, my eyes were still very irritated. I was beginning to lose hope and didn’t know what to do next.

I am so photogenic. I smile for pictures even with needles in me!

Last week, a good friend sent me a text message encouraging me to see an eye specialist. I have had many people recommending ophthalmologists to me. I don’t think they realize how daunting it is to see a specialist without insurance. I have an HMO and can only use their doctors; they have continually denied my requests for opinions outside of their network.

My friend was persistent. She wrote me a second time:

If you read this doctor’s list of achievements, he appears to be an excellent scientist and diagnostician.

I thanked her. I reminded her that a year ago, I spent a lot of money to go to a well-known eye specialist who spent 10 minutes with me. He told me two things:

1. There was nothing that I should ever do to my eyes again (surgically).
2. When I mentioned my dry eye pain he said, “Oh, I don’t treat dry eyes – you need to see another specialist for that.”

This feels daunting, at times – hopeless and expensive. I understand your wariness. Those of us who have tested the medical world know that true Health Care does not come easily. Keep the faith! The alternative is unthinkable!

I’d gladly spend money for relief but it’s all unknown. But I value your recommendation and promise to look into it. I’ve dealt with the unthinkable more times than I ever wanted to, sadly.

If you see this doctor, be candid about your plight. Besides compassion, you might raise his scientific curiosity. You must carry the same tenacious torch for YOU, as you’ve carried for your kids!! Sorry for being so forceful. This all hits a passionate chord with me.

I love your chord. I’m blessed to have a friend like you. I’m crying.

 

 

I wrote down the doctor’s number and it was next to my computer. My eyes were just awful and I began to think that perhaps I might consider this. But first, I had to overcome defensive and negative thoughts. Did my friend think I wasn’t taking care of myself? Was I not tenacious with this problem that had tortured me for three years now?

I understood why I felt angry. Why would I trust any doctor? The very doctors that I trusted had literally dumped me with my eye problems. And I could go back further to the surgeon that operated on my son, who subsequently died. At the moment, I had a cornea doctor who was willing to prescribe the remedies I researched and requested, but so far nothing had helped me.

That was a lot better than the first specialist who told me, “Your eye condition is considered a disease. There’s nothing else I can do.”

Then I thought about the fact that my friend was so caring. How could I be angry with her for that? I went ahead and called the clinic and never even looked up this doctor on the Internet. But I made sure to ask if he treated dry eyes. The woman on the phone put me on hold and came back to say, “Yes.”

I scheduled an appointment; it was two weeks away and I had ten pages of forms to fill out.

I shared my plan with my friends. I was surprised when I received a message from my good friend, Dr. Sam telling me he knew this doctor. He wrote:

He is brilliant. I’ve worked closely with him at Los Angeles County Medical Association…he is a former President like me…I can recommend him highly!…Sam

I want to add some perspective to my feelings about hope so I’m sharing correspondence from the wonderful dry eye support group that I belong to on Facebook. These exchanges happened several months ago. My words are in black/bold.

A woman named Mary posted:

My eye pain was horrible today at work. I could hardly open my eyes. I can’t cope anymore – I want to rip my eyes out.

Mary, I wish I could hold a crystal ball for you and tell you this is temporary. I know you are in Hell. Please hang in there because one day you will be so glad you did. You will heal. It takes patience and a lot of self-love. Dig deep because you are worthy and have a lot to offer this world. Don’t let this disease win.

Thank you, Judy. Now for the past three days, I’m feeling better. I am unable to figure out why. I don’t see any pattern, any change in my routine . . . This is really frustrating!

Mary, I suggest trying to focus more on gratitude and appreciation rather than frustration.

Mary, that’s wonderful news! So much of how I’m feeling surrounds the way I talk to myself. Enjoying it is great. My motto is – the more you look for something, the more chance you’re going to find it. That’s how I feel about my eyes. I keep looking when they hurt and know better days are always possible. That’s why I told you not think about ending your life – TEMPORARY is something I tell myself a lot when I’m discouraged!

Oh, and I also see you as very grateful. When I’m told to “feel grateful” that hurts. I know you are!

Thank you, Judy, because I was hurt to be honest.

I get so sick of dealing with this day after day after day!! I just want to be a normal person with everyday problems.

Unfortunately, eye pain is impossible to overlook. I can push many types of pain aside, but when it’s in the sensitive part of my eyes – there’s no escape. I can say that my eyes have improved to a point where I can think about other things now. I cry tears of gratefulness for that but it’s far from what used to be normal for me. I pray it gets easier for you.

Went to the emergency room. I don’t have an infection. The doc told me he couldn’t do anything for my eye pain. I just want to end my life.

Mary, please don’t let this disease cause you to hurt yourself. Your life is very valuable. Pain can make us crazy, for sure. I’m a bereaved mom and I know if you ended your life – there would be a lot of pain for those who love you. It will get better. I promise.

Judy, your message is so kind – I’m crying right now. Thank you. It is a relief to talk with people who understand what I am going through, thank you so much!

Tears are good, Mary. You are not alone with your pain. You will find relief and until then – please do not despair. It is in this valley of sorrow where you will discover things that you will carry for the rest of your life. It is an opportunity to let go of what we expect from life. I think this is a turning point for you. It’s okay to express your anguish. You are going to beat this. I know you will.

© 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.

#16 MY JOURNEY IN SIGHT

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.

2. 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.

3. 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.

4. 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).

5. 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 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.

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.

2. 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.

   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.

   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.

   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 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

3. 

   © 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.

#15 MY JOURNEY IN SIGHT

This painting was a watercolor exercise I did over 30 years ago that became a terrific addition to my portfolio. Unfortunately, I never liked illustrating beverages.

Originally posted on September 21st, 2014:

It happened during an ordinary day. I was driving somewhere and suddenly I realized that my eyes didn’t hurt.

I blinked a few times and was so grateful that my eyes felt “normal.” Then I noticed how much better my vision was without the fog related to having dry eyes.

I was so happy that I began to cry. I whispered a thank you to God for this blessing.

Although I had some foggy and irritated sensations in my eyes later that day, whatever discomfort I experienced was manageable. Now I knew that my condition wasn’t going to be something that would torture me forever. My faith in healing was confirmed!

This gives me an opportunity to share some very old illustrations I painted for a hospital nutrition brochure back in 1984.

A few weeks ago I made a major commitment to follow a healthier path. I stopped eating whatever I felt like; I was so tired of beating myself up about it. 

I made healthier food choices and suddenly, everything started tasting better – even an apple was more enjoyable than the chocolate I used to snack on.

Which one would you rather have? Seriously, I am choosing the apple because I have made a commitment to get healthy! (These are illustrations of mine)

I joined a YMCA and began swimming laps a few times a week. On the other days, I fit in a half-hour walk. I continued to play tennis, and went from once to twice a week. 

All of this certainly helped my mood but I wasn’t sure if it was going to help my eyes. 

But then my eyes began to improve. Because I always hear my lyric lines running through my life, I share with humor one that came to mind with my first huge change. The words in my head were: “My life became clear.”

It was because I started drinking a lot of water!

I’m not sure how many glasses I gulped down exactly, but it definitely totaled over the recommended 8-10 glasses a day. I gave up the iced tea with a lot of artificial sweetener, which was certainly not very good for my body either.

Only the week before, I had gone to my hypnotherapy appointment with a stack of pages related to dry eyes. I told Connie (my hypnotherapist) they were sent to me by a wonderful woman who had reached out to me. Her name was Judi, and she was the leader of a dry eye support group. I wished her group meetings were closer because unfortunately the group met about 2 hours away from where I lived.

Connie glanced at the many pages I stuck in front of her. She pointed to one of them and said, “It says right here that drinking water is very helpful for dry eyes.” She paused and then said emphatically, “You know, drinking water might not only help your eyes; it’s beneficial for weight loss and your overall health.”

Connie pointed to a metal bottle filled with water right there next to her. She shared how she worked hard to drink a lot of water every day.

I listened and my mind was open to it. Why not? I left that appointment and made a commitment to Connie that I’d try to drink a lot more water.

During that next week, drinking water became my new habit.

I was running to the bathroom a lot and it made me think of a poem I had written with a new title. Instead of “My Tears Filled an Ocean,” my new poem was “My Pee Filled an Ocean!”

Okay, so my illustration might not be water exactly.

It was a beautiful summer morning. A week had passed and I was so excited to see Connie for our appointment. I couldn’t wait to share with her how much my eyes had improved. In addition to drinking a lot of water, I had done another remedy at night that Judi had recommended. I will share more about that on my next post.

I’m not really missing the iced tea and artificial sweetener I used to drink all day long.

© 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

Originally Posted on September 12^TH, 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.

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.

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.

© 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

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.

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!

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.

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.

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.”

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.”

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.

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.

To be continued . . .

© 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.

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.

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.

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?

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.

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

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.

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.

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!

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

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 . . .

© 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.

#10 MY JOURNEY IN SIGHT

This was originally posted on March 1^st, 2014: 

When I think about how many eye specialists I’ve seen, my head spins.

I have two conditions: Dirty vision due to posterior vitreous detachment and dry eye syndrome.

Unfortunately, my dry eye condition is the one that has really made me miserable.

I keep hoping I’ll find a way to alleviate my pain. According to the last corneal specialist I saw, it worsened and became a chronic problem because of hormonal changes related to my age (I’m 54). But primarily, it was brought on by cataract surgery.

Still, I can’t help but wonder about an emotional component. I know the body can exhibit things that our mind does not allow.

When my son had violent meltdowns, I developed severe rashes on my elbows that were constantly bleeding. During one of my mother’s early hospitalizations, I was afflicted with severe stomach pain. I even remember when it began – it was triggered by the smells in the rehab facility where she was. I ran to the bathroom and my horrible nightmare turned into microscopic colitis.

Those physical manifestations of my pain were temporary, but added to my misery because they lasted for several years and made everything I did harder.

I am extremely grateful that those conditions eventually faded away.

My eyesight problems remind me of my true weakness. I survived my empty marriage by ignoring the things that upset me – I looked the other way.

But where do I look now? I just can’t escape the fog and dirty vision; I’m in pain and it’s too much.

I was disappointed after paying $500 for an opinion from a doctor at the world-famous Jules Stein Eye Institute. He spent 10 minutes with me and an associate examined my eyes. I still have not received a report from him and it’s been a month. He called me the next day to ask me why I wanted it, and I found his attitude annoying. He said he would not put anything in his report that indicated I deserved reimbursement because it caused problems for him in the past.

This is a filtered photo from my recent trip up north. It does represent how I feel with the glare and fog. Nature and the outdoors are healing, but my eyes still hurt.

My bedtime ritual has become fairly time-consuming. Despite doing all the things I’ve listed below, my eyes still burn and have sensations. I have difficulty concentrating and often close my eyes when I walk outdoors. I bump into things a lot!

Judy’s Bedtime Eye Ritual:

Wipe eyelids with special eyelid cloth and cleaner

Put in Restasis eye drops

Start humidifier – do not slip on the wet floor

Put in eye gel drops

Warm up hot compress in the microwave

Put on iPod and relax with compress over my eyes

(The last step is the one I like best)

Twice now, I’ve seen an ophthalmologist who is a cornea specialist through my HMO.

At our last appointment, I let him know that I was following a regimen of all his suggestions. This doctor said sweetly, “I’m sorry, but there’s nothing else left that could help your condition. It’s incurable.”

So I reminded him about something I knew about – plugs in my tear ducts. Twenty years ago when I wore hard contact lenses, I had two inserted. They stimulated more tear production and helped. Only one of them remained.

He said, “Sure, I’ll put more in for you.” That was when I learned that there were four, not two places for those plugs.

I would have two more inserted that would give me three plugs. I learned that the upper lid tear ducts, however, were not so easy to work with.

It was very painful as he pulled on my upper eyelid and pressed down. I tried to remain steady as I felt the sting of his tweezers. It took almost fifteen minutes and my eyes were dripping. There was no numbing for this procedure and I used every technique I could think of to stay calm and still.

When he was done he said, “It’s likely that they will fall out, but if you think they helped then I’ll cauterize the surrounding tissue to make them stay in permanently. Let me know.”

As I left, I wondered when I would get relief since he told me to return in six months.

I’ve had the same HMO since I was born. Although I’m ready to leave it, I do love my primary doctor. He really did try to advocate for me, even though I paid for my outside opinion with my own money.

His last message to me was, “I have another patient who was given the run-around. I sent her to a colleague of mine that I went to med school with. She’s a retina specialist and might be able to help you also.”

I told him I was willing, and a referral was sent. It helped when he mentioned another patient was given “the run-around.” I wasn’t alone with my problems!

I sure didn’t hold out much hope for this eye specialist. I was so tired of having my eyes dilated.

The appointment came up quickly and I prepared myself to hear the same speech of, “Sorry, but there’s little that can be done for dry eyes and PVD (posterior vitreous detachment).”

As I sat in the waiting room, I heard my cataract surgeon’s voice nearby. I put my head down and hoped he would recognize me. He was the last person I wanted to see even though many doctors have told me he did an excellent job with my implants.

My name was called and I went into the examining room. Immediately, I liked this doctor. She was energetic, young and sharp.

I mentioned my primary doctor’s name. Suddenly she became bubbly and used his first name while recounting memories from when they were both in medical school.

I noticed she was confident, but not arrogant. She seemed to really want to help as she sat down next to me. When she asked me to describe my problems, I didn’t know where to start.

My voice did not reveal my emotional turmoil at first. But because she was so compassionate, I felt as though I could allow myself to vent all the frustration I had over my condition.

Tears began to spill onto my shirt, which was such an irony for someone like me suffering from dry eye syndrome.

She handed me a tissue and said, “You know, I consider dry eye syndrome to be a disease. It is chronic and affects your ability to function. It’s not only hormonal. The fact that you wore hard contact lenses for many years is another factor – that created scar tissue. But even though I can’t treat your dry eye condition, I have another cornea doctor that I want you to see. There are still things you haven’t tried. Have you heard of serum eye drops that are made from your own blood? It can be a miracle. Another idea would be to create a moisture chamber for your eyes by wearing goggles at night.”

I listened to her rattle off more ideas to add to my other rituals. I didn’t expect much from this appointment, but suddenly I had a doctor who really seemed to care. 

Then she said, “Okay, let’s take a look. I’m going to examine you now.”

In the darkness, I drifted off in my mind to avoid the pain. If my retinas were still intact, I was always grateful. Thankfully, they were this time, too.

She said softly, “I cannot imagine how you can see with the dense amount of junk in your gel. I can see it! There are ghost blood cells and enormous floaters. It’s like a curtain of spider webs.”

I was amazed to hear her words. That was exactly the way I had described my vision.

She was enthused when she said, “I can clean it all out for you. It would take just ten minutes. It’s up to you whenever you’re ready!”

“Is that considered a Vitrectomy?” I asked.

She nodded, indicating it was. The way she described it, it didn’t seem nearly as radical and dangerous as I thought it was. Suddenly it sounded tantalizing.

For another half an hour, she explained more about the procedure to me. She said she didn’t want to appear overconfident, but had never experienced a bad result. “If a doctor experiences a bad result, it can leave them fearful. I’m not on the opposite side telling you there aren’t risks. The reason for my success is that I choose my patients carefully. You are actually a perfect candidate. Yes, there are risks and with this procedure, and your risk of a detachment is slightly increased. But you are at risk for a retinal detachment even without doing anything at all!”

She mentioned that she did not do the surgery on anyone who did not have lens implants. One risk of the procedure was developing cataracts.

“You already have had cataracts, and that is another reason I could do this.”

Then she added, “I attended a workshop recently and the same doctor you just saw from the Jules Stein Eye Institute was there!”

She shared more about that workshop.

“The purpose of that workshop was how people who suffer with your problem have their life deeply affected. You are an artist and I can see how much you are aware of detail. This is all about your quality of life and this procedure could make a huge difference for someone like you.”

I left that appointment with a surgical packet and was given an appointment with a new corneal doctor to help me with my dry eye syndrome.

I drove home with my eyes half-closed. The pain was unbearable. But my heart was filled with hope. I wasn’t going to jump into having a Vitrectomy, for sure.

Before I would consider surgery, I first needed to get my dry eye condition under control.

I had a lot to think about. The specialist I had paid $500 to see made me promise not to touch my eyes. He said that he had many patients who had lost their eyesight and wished they had known that ahead of time.

This new doctor seemed terrific. But I needed to really think through everything. That wasn’t easy to do when I felt desperate about my condition.

But now I had some hope.

And hope was everything for me.

© 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.

#9 MY JOURNEY IN SIGHT

I am a commercial artist. This job was for a bank brochure that stated, “We have all the tools you need.” I need tools to help me cope with my eye discomfort!

This was originally posted on February 4th, 2014:

In 2012, I had difficulty seeing and was told that cataracts were probably the reason. I was vulnerable at that time because I had recently decided to end my marriage of 31 years. I trusted that my vision would improve and I’d be happy with the results; most people were.

But unfortunately, I suffered from many complications following those cataract surgeries at the age of 53.

Recently, I’ve been brought to my knees by unrelenting pain in my eyes.

My floaters from PVD (posterior vitreous detachment) no longer are my focus. It seems that my dry eye syndrome has gotten worse. As a result, I have fog and sensations that have only added to my misery.

I cannot concentrate and sometimes it’s hard for me to even open my eyes. The pain is so disturbing that I am teary and frustrated.

The medical profession has not been able to alleviate my condition. I have carefully followed a regimen of wiping my eyelids at night, using a hot compress twice a day and Restasis eye drops. I don’t want to blame myself or anyone else for this condition.

I simply want to live without my eyes making me crazy!

I miss my younger eyes, and not for cosmetic reasons.

Therefore, I was anxious for my appointment to come quickly with a top eye specialist at the Jules Stein Eye Institute in Los Angeles.

Finally the day arrived. 

It was a long morning – a 90 minute drive and over an hour of interviews and eye exams before I would see the top doctor. The cost for this appointment was $475.

Before seeing the top doctor, I saw his associate who did my retinal examination. I honestly wasn’t too thrilled when this first doctor introduced himself.

I said, “Where’s the doctor I’m supposed to see?”

He explained that I would see the top doctor after he examined me. I was a little suspicious, but then I found this man to be very compassionate and informative.

I held onto his words when he said, “You are very near-sighted. Yes, you had your vision corrected with the lens implants and cataract surgery. But with extreme nearsightedness, the brain can have trouble adjusting.” 

I almost cried when he said, “You’re not alone, I’ve seen many other patients that suffer and cannot manage to get used to their new vision.”

I had brought with me a sample of one of my illustrations. When I showed it to this doctor he nodded and said, “Well, you this makes even more sense to me now. Look at your attention to detail – and now your focal distance has been completely changed. That is huge!”

So I heard once again that with my myopia, I have watermelon shaped eyeballs. The membranes over them are thin and pulled taut. This explained my eye gel separation and why floaters and blurs have bothered me so much.

When the top doctor finally came in the room, I felt like I was seeing a celebrity.

I shook his large hand and said, “I liked seeing your picture on the Internet. I feel like I know you.”

He replied, “You mean, my picture didn’t scare you away?” I noticed his voice was deep and buttery.

His confidence was alluring; he was a large man and his aura was powerful and reassuring. Gently he told me that advances were coming that might help me – someday soon, but not yet.

My voice quivered when I asked him if there was any way he could help me; I was so miserable. I held back my tears as much as I could in order to say those words.

He said, “I don’t specialize in dry eyes, so I can’t help you with that. But please, do not let anyone touch your eyes. No surgery or a laser on your floaters – please promise me! I’ve seen many patients who wished they had known that before they ended up losing their vision.”

He recommended I have some eye scans for a baseline and said my HMO ophthalmologist could call him to discuss it.

I was graced by his presence for exactly ten minutes. He swooped in and swooped out.

His last words were that he was certain that I would improve without any treatment at all; it was inevitable. I prayed it would be soon.

 

I had opted to go alone to this appointment. The paperwork recommended that I should have someone drive me because my eyes would be dilated. I brought my dark sunglasses and planned to drive home carefully as I had on many other occasions.

I did not want to lean on any of my friends and was certain I could manage this myself. Being on my own was easier.

I put on my dark glasses. But as I was entering the elevator, I didn’t see the door was closing and it slammed into my arm. As pain shot through me, I felt the wall of tears pushing outward. I held them back and swallowed. I wanted to scream.

When I got into my car, the dam burst. I began to sob loudly – it was such a relief.

Suddenly, someone was standing next to my car and banging on my door. I opened the window and a man said, “Are you leaving? I want your parking space!”

He had no idea I was crying. I caught my breath and drove home playing music to soothe my pain.

Later that night, I scrolled through Internet forums to see what people had discovered as remedies for dry eyes. I couldn’t believe that I was now looking at yet another support group in my life. I clipped some paragraphs that spoke to me.

I will share them at the end of this post.

I came across a study related to the high incidence of dry eyes in war veterans with PTSD. It caught my eye.

Because of hypnotherapy, I try very hard to be in touch with my subconscious. I have often felt that I am suffering from Post Traumatic Stress Disorder. 

What happened next was so unsettling and horrifying. I was only trying to imagine what trauma I experienced that could relate to this.

Waves of realizations began to sweep through me. 

Images circled and attacked my heart with unrelenting anguish.

All I could see were eyes!

My father’s eyes . . . Filled with pain for months before he died. And then I sat with him and listened to his death rattle for a week. It was shocking to see him die with his eyes and mouth open.

My mother’s eyes . . . A week before she died, her eyes conveyed such resignation and sadness. It haunted me terribly and I wrote about it. Shortly after, I listened to her death rattle for a week until she died in my arms. Her eyes also opened at the moment of death to look at me.

My husband’s eyes – filled with anguish and shock that I wanted a divorce.

My children’s eyes – filled with anguish and shock that I wanted to divorce their father.

And lastly, Jason’s eyes . . . It was a horror to see my child dead and his lifeless eyes were what shocked me the most. They were wide open and staring in different directions.

I copied these paragraphs below from dry eye articles on the Internet.

Anxiety and depression are more prevalent on patients who are older and have had the disease for longer periods of time. The anxiety and depression are caused by the constant irritation, pain and discomfort of a dry ocular surface. it is incredibly stressful to be constantly aware of discomfort in your eyes, as it is almost anywhere in your body, but the eyes are much more sensitive than most other areas of the body, hence the increased levels of anxiety and depression. 

In addition to affecting ocular health, the discomfort and irritation of dry eyes can cause deterioration of general wellbeing, emotional health and social functioning.

© 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.

#8 MY JOURNEY IN SIGHT

Originally posted on January 15th, 2014:

I arrived for my hypnotherapy session completely distraught. My eyes were foggy and the sensations were impossible for me to ignore.

There have been several times in my life when I had physical conditions that were definitely stress-related. Over time, those problems resolved. One eye specialist recommended hypnosis as a way to deal with my discomfort related to posterior vitreous detachment.

Now I was suffering at a time when I had less stress than usual in my life. I desperately wished I could solve this mystery. The greatest stress I had was because my eyes were always bothering me!

Connie began our session by helping me with a technique known as “tapping.”

First, I spoke about what I was feeling. She took notes and then our work began.

I followed her lead and she repeated words that I had just said. I repeated those words while at the same time tapping areas of my body in a repetitive fashion.

Tears were pouring from my eyes as I repeated painful phrases:

“I’m angry. This isn’t fair. I don’t want to live with this condition. The doctors told me I’d just get used to it – but I can’t! I could have surgery that might cause me to lose my eyeball! I don’t know what to do. I’m lost!”

The tapping went on for about ten minutes and then we stopped. Connie asked me how I felt.

Feelings were all in the forefront now. This technique was excellent at causing me to let down my guard. Tears and feelings kept gushing out.

I sobbed, “Oh, I have a lot of baggage around doctors! After all, my son died following heart surgery when I was told his odds were excellent. They were wrong!”

With those words, I realized that I had not truly let go of past trauma.

I cried and cried. And then I felt better.

Today I had an appointment with my regular doctor. He was very sympathetic and kind as he looked right into my pained eyes.

I could feel my lip trembling as I thanked him. He told me he would be my advocate and put in a request that my HMO cover the cost for my second opinion. He said it would probably be denied – but it was still worth trying. I felt so grateful for him.

Together we went over my entire history of eye issues that began shortly before I had 3 cataract surgeries in 2012. Since then, I had seen at least five different eye specialists within my HMO and had gone for another outside opinion, which I was not reimbursed for.

Before I left, I mentioned something that Dr. Sam had suggested – was there any rheumatological testing he could do to look for other causes of dry eyes?

My doctor said, “Wow, your friend really knows his stuff.” Yes, I’m going to order lab tests for that right now.

I asked him how long it would be until I’d get a decision from the HMO. He said, “Don’t cancel your outside appointment. If it takes a long time, that will actually work in your favor. Let me know what you find out from the doctor you’re seeing at Jules Stein Eye Institute.”

I told him I certainly would.

I walked to my car. My eyes were half closed and I felt like something was crawling under my eyelids. This could not be normal and I hoped I’d get some answers soon.

© 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.