I get depressed when I long for the eyes I had in the past
Posts on my Dry Eye Support Group Site
July 25, 2014
Hi everyone. I wanted to post an update about my condition. I had been using hormone replacement therapy (pills) and a testosterone eyelid cream for three months. Well, it didn’t help my dry eyes and the doctor said I could stop. In fact, the eyelid cream burned my eyes all the time. I will soon be getting serum tears and pray they will give me relief.
But yesterday at my appointment, my cornea specialist did something else. She used a fine needle like tool to unclog the oil glands in my upper and lower lids. Then she squeezed my eyelids. It wasn’t pleasant. My eyes were sore after, but I think it did help a little. She said the oil that came out was very thick, too.
I’m still using Restasis, eyelid wipes and hot compress. Those things don’t seem to do much.
The worst thing about this condition for me is depression. I don’t want to live this way for the rest of my life and it gets me down. So I try to stay hopeful and will certainly share how those serum tears work once I get them.
November 29, 2014
Just last week, I had to go off Doxycycline. I was having terrible pain in one leg and it became so bad that for two weeks I could hardly walk at all. I had an MRI and went to a chiropractor, but am convinced it was a side effect from the Doxy. I stopped taking it and the pain went away. It’s one thing to try a remedy and have it not work – another thing to suffer from it. Unfortunately, when I used serum tears – my eyes were much worse. I am not going to list all the remedies I’ve tried, but you are all familiar with them on this site.
Ever look for something and later you realize it was right there in front of you but you didn’t see it? Well that’s the best way I can describe something simple that seems to really help me. I’ve been drinking 10-12 glasses of water everyday.
I haven’t stopped searching. Although my eyes are better, they are not completely “normal.” That is something I always dream of having again someday.
June, 2015
I basically have surrendered to my condition. Stress causes my eyes to worsen, so I strive to keep my environment comfortable. Every day, my goal is to maintain serenity. Recently, I tried a few new remedies for my eyes, but found it discouraging when every single one caused my eyes to worsen.
Even though I have continued to drink water, my eyes still bother me and have worsened again.
I get depressed when I long for the eyes I had in the past. Acceptance and appreciation for what I’m able to do despite this, is where I’ve put my focus. It is not easy, but familiar – it reminds me of how I coped with grief. I have a strong belief that healing is possible. I tell myself on bad days that things will get better.
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.
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.
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.
This was originally posted on March 1st, 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.
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.
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.
Today I had an appointment with my regular doctor. He was very sympathetic and kind as he looked right into my pained eyes.
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.
Something was wrong. I was having trouble concentrating because my eyes were slightly burning and foggy a great deal of the time.
This post was originally written on January 12th, 2013:
Something was wrong. I was having trouble concentrating because my eyes were slightly burning and foggy a great deal of the time.
On a daily basis, I was suffering and plagued with intense dry eye syndrome again – the familiar feeling of feathers and sensations started to make me crazy!
This condition was worse when I was away from home. It plagued me during my recent trips, so it wasn’t about spending a lot of time on a computer.
Gradually, it dawned on me that something had worsened. I was overwhelmed as my eyesight became more and more unbearable. My mind chattered to overcome negative thoughts and sadness. I was losing the battle.
The eye department and facility where I had my cataract surgery did not give immediate appointments unless it was an emergency. This wasn’t an emergency, but clearly I needed to address it. The last time I had gone to that facility with similar symptoms, I received admonishment that my condition was irreversible and I just needed to “get used to it.” I was given a prescription for eye drops (Restasis) and told that eventually my nasty floaters and blurs, which were a result of Posterior Vitreous Detachment in both eyes, would be less noticeable.
It occurred to me that perhaps my physical discomfort was tipping the scales for me now. It was hard for me to open my eyes. I closed them and tried to ignore the dirty vision in front of me, even though I began to feel desperate. Ophthalmology appointments with my HMO were never easy to get and it wasn’t truly an emergency. Or was it?
Depression began to descend upon me like a dark cloud. I found myself crying easily and realized I needed to do something. But what could I do?
I decided to call a retinologist whom I had last seen ten months earlier. He seemed compassionate and willing to help me – but the only way he could do that was through surgery. He said it would be best for me to wait and get in touch with him the following year if my problem hadn’t improved.
He could restore clear vision with a Vitrectomy, but it was an extremely risky procedure and he would do it only in circumstances where a patient could not function otherwise.
But when I called, I kept reaching a recording that his secretary was on vacation. I tried calling back several times with the hope of simply scheduling an appointment. My calls were not returned. A week later, I finally received a call back.
When I heard the voicemail, which I’ve transcribed below – I was very upset.
“Hello, this is Angie. I was on vacation for a week, but I was looking at your chart note and he wants you to contact him only if you want surgery. So let me know if you want surgery. If you do, then I’m going to pass the message on to him and he’ll have his surgery scheduler schedule you. Okay? Give me a call back at . . .”
Such extremes! On one end, I was told that there was nothing that could be done and the other choice would be to have radical surgery. There had to be another answer! Perhaps there were other options. I was tired of only seeing things in black and white, which I often found myself doing.
I went on the Internet and saw that there were other remedies for floaters.
I contacted my regular doctor to tell him what was going on. He was really the best part of my HMO, because he was terrific about following up anytime I asked him anything.
Once again, he was my champion. Within an hour of my emailing him, the retinologist suddenly called and was willing to speak to me.
I described my symptoms and the retinologist explained that surgery would only worsen the dryness I was experiencing. Vitrectomy was what he specialized in and with a 10% chance of losing my eyesight, it wasn’t something I would consider. He said, “I can’t help you, but you can see a cornea specialist for the dryness.”
The following day, I was given an appointment. I couldn’t believe it!
I explained my symptoms to this cornea doctor. He said, “Dry eyes tend to worsen with age and hormonal changes. Sadly, it isn’t something that can be cured. Cutting into the eye with cataract surgery has a permanent effect upon the production of tears. Artificial tears are not the same in terms of lubricating as natural tears.
He was right about that. I poured them into my eyes and it made no difference. I still felt sensations and pain. He gave me his favorite remedy. He told me to microwave rice in a tube sock, and then use it as a warm compress on my eyes twice a day.
I followed his instructions, but found little relief.
In the Los Angeles area where I lived, there was a world-famous eye clinic at UCLA. I decided it was time to go outside my HMO to get another opinion.
I asked my good friend, Dr. Sam to find the name of someone I could see. He followed through and I scheduled an appointment with a well know doctor. It would be on the first Monday in February. This was going to cost me a lot of money, but I decided it was far more important than anything else I could buy.
I copied this from a site on Facebook called Sun Gazing. Not sure who the artist was, because I want to give credit.
My hypnotherapy sessions every week became very intense as I worked very hard to discover ways to help myself. I plodded onward and was thankful for the relief I found during those amazing sessions. One thing I learned was that I was not being gentle with myself. Criticism was something I had lived with all of my life. Being self-critical was a habit I wished I could overcome.
Two words also played over and over for me. They were: compare and despair.
Those words weren’t helping me. True, I had already suffered the horrible loss in my life of my child. That meant nothing could compare and there was no allowing for despair. And it meant I wasn’t grateful for all the possibilities that my situation could be much worse.
As my eye condition began to overwhelm me, it reminded me very much of grief.
AN UGLY CONVERSATION
What I am about to share is very ugly. It is about the chatter that has gone on in my mind and encompasses so much energy. There are two voices in my mind that battle endlessly.
I try to use a filter to help myself. I call it the GENTLE FILTER.
This conversation I am sharing is an expression of complete vulnerability. I am honest and raw.
One voice is called: GRIEF. Grief represents sadness and hopelessness.
The other voice is the INNER CRITIC. That voice is judgmental and harsh.
GRIEF: Oh my God! Please, please – I cannot face opening my eyes. It hurts and it’s horrible that I have to look at what is right in front of me. I cannot accept this. I just want to see the way I used to without fog, blurs, shadows and ugly lines swimming all over my eyesight. My eyes burn and I don’t want to open them. Why did this have to happen?
INNER CRITIC: You are weak – come on! You’re lucky that you can still drive and see well enough to function. This problem is a result of your inability to accept the aging process. You are making your own problem worse. You are suffering with this because you are unwilling to be happy about your life. Now that you’ve radically transformed your future by ending your 31-year marriage, did you think you’d be free from suffering?
GRIEF: I know it could be worse, I want to celebrate that it isn’t blindness or cancer. I am grateful for all the beauty in my life, but I’m still sad about this. I sure miss my mom and dad. They really cared about me and would have helped me figure out what to do.
INNER CRITIC: You don’t really miss them. They would have only suffered to see you going through this. It’s better they’re gone.
GRIEF: I have grieved so many things in my life. I believe in healing. I’m okay about so many other losses – but not this. I cannot find a way to get used to this. Also, I was so proud to be a shining example of finding joy again in life. Now I am a fraud because I don’t look forward to the future anymore. I want to hide and curl up in a ball. What is the point of anything when I want to just close my eyes? I thank God every moment because I have my music to soothe me. There is still so much I want to do, but I don’t feel well. I think I’m ill.
INNER CRITIC: You’re not ill. You are suffering because you aren’t willing to face your grief. You are over-eating and biting your nails – all of this is a result of your weakness. If you treated your body better, you would feel better. This is not about your eyes.
GRIEF: I surrender. I give up. I’m sad.
GENTLE FILTER:
You are suffering and trying to comfort yourself any way you can. Do not give up hope.
The retinologist’s words were crisp and firm. “Can you function? Can you do your work in order to sustain an income?”
Songwriting is both mysterious and magical for me. Currently, I am composing lyrics for a new song.
Written on June 10th, 2013:
My post title is a line of lyrics from my song “The Unknown.” When I wrote my song in 2011, I was horrified by my lyrics. It was because they were so revealing and honest.
The lyrics of my song that include this title go: “My tears I hide when you are near me, I cry inside where you can’t hear me.”
I operate on that level more than I’d like to admit. I hide my pain, while inside I am screaming and crying. It has been quite difficult for me to release my feelings and very unhealthy. In order to numb myself, it is far easier to indulge in overeating and the result has been awful for me. I am certain that the reason my music heals me is because it is the one place where I can freely express myself.
“Can you function?”
The retinologist’s words were crisp and firm. “Can you function? Can you do your work in order to sustain an income?”
I looked at him and hesitated. Softly I said, “Yes, but it’s pretty tough. I get headaches and it’s frustrating.”
He spoke kindly and said, “It’s very important that you understand why I’m asking you this. If you tell me you cannot work or function, I will schedule you for a Vitrectomy tomorrow.”
I had read about this procedure. It was rather drastic. The gel in the eye is replaced with vegetable oil. Walla! I’d have crystal clear vision again. But of course, nothing is that simple. The procedure is quite risky.
He explained that it was a routine surgery for him; and he did it often. He said it would take less than an hour; then I would go home and live with the result. With seriousness he told me that there were rare instances of failure and he remembered each and every case.
Due to my nearsightedness and elongated eyeball, the procedure definitely carried more risk for me than the average person. His recommendation was that I wait at least a year to be sure. As I left, he told me that he it was more than likely that with time I would adjust.
I walked to my car. The sunlight was painful and my vision was swirling with feathers and lines. I put on sunglasses and tried not to cry.
I decided I liked this doctor. Mostly, I appreciated his compassion.
I had made this appointment because I was so discouraged by my eyesight; I wanted reassurance that my retinas were still intact and felt it might not be a bad idea to see another eye specialist. I had already read a lot about PVD (posterior vitreous detachment) on the Internet and knew there wasn’t simple cure for me.
I had actually been given a referral to this doctor a month earlier after I informed my HMO that I wanted reimbursement for a second opinion. My request for reimbursement was denied, even though I had given prior notice. I was given a referral to see this retina specialist from my HMO instead. I made an appointment, but it was several weeks away and I was miserable.
I did not have the energy to appeal the denial of my $250 expenditure.
The doctor that dispensed my second opinion recommended a laser treatment to help treat a common complication I had from my cataract surgeries.
Finally after complaining, I was given a sooner appointment where a doctor at my HMO performed the laser treatment. I was told I could cancel my appointment with this retinologist.
After the laser treatment, I was hopeful that my eyes would improve. But it was not the case. A few weeks later, I had a second PVD when my vitreous gel separated in my “good” eye.
On top of that, I had painful dryness in both eyes that was excruciating. All the while, I was busy working on an illustration assignment. Thankfully, my computer had a large screen that was helpful for my eyes.
It was my music that continued to keep me going and helped me the most.
My eye difficulties inspired the lyrics to my song “Somewhere I Can’t See.”
I am having difficulty functioning and am discouraged. My brain is screaming loudly that this is intolerable. I quiet the screaming by playing music and it does help. But my days are harder than I ever imagined.
Written on May 26th, 2013:
This past weekend I performed at a party; it was on the day that marked the one-year anniversary of my father’s death and was the same weekend as my deceased son’s birthday.
Unfortunately, most of the evening I was worried about whether I saw sparks in my vision, which meant I could be having a retinal detachment. I wasn’t sure if what I was seeing was related to my eyesight or the tiny light bulbs lining the outdoor performing area. I planned to make another appointment with a retinologist as soon as possible or go to the ER if it became worse.
I played 3 songs and shared a lot about my life in only twenty minutes. I actually enjoyed speaking more than singing. But my audience was receptive; the people listening were kind and embraced me.
As I write this post, I am trying gamely to cope with extremely uncomfortable eyesight. My eyes are not mine anymore and this has deeply affected my quality of life.
This is a result of both of my eyes experiencing PVD, also known as Posterior Vitreous Detachment. It happened to my left eye in January and last week my right eye was afflicted. It seems that having cataract surgery last year accelerated many problems for me due to my severe nearsightedness.
I went on the Internet and the consensus from the medical profession is that this condition is untreatable and something you eventually adjust to; it often takes a year. But I also found words written by other people suffering greatly with all of the same symptoms I had.
I see shadows from dark floaters. There is fogginess; many blurs and my eyes actually feel wobbly. On top of this, I’ve developed sensations as a result of a dry eye condition. My eyes continually water and feel uncomfortable. Daylight hurts.
I am having difficulty functioning and am discouraged. My brain is screaming loudly that this is intolerable. I quiet the screaming by playing music and it does help. But my days are harder than I ever imagined.
Yesterday, I had a big disturbance in my GOOD eye. Just like what happened to my left eye in January, the gel separated from the eye wall in my right eye.
Written on May 17th, 2013
Yesterday, I had a big disturbance in my GOOD eye. Just like what happened to my left eye in January, the gel separated from the eye wall in my right eye. There are large areas of blurriness (from blood) and dark floaters everywhere on both eyes now. I am very discouraged. This is even harder and I am overwhelmed!
Today, I happen to have an appointment to see my eye surgeon. I waited three weeks for this appointment and it was to deal with dryness and inflammation – not this! I want to scream and cry. I hope I can hold it together.
I feel like I am walking through life with a filthy windshield now. All of my words to help other people with grief now apply to me. I hate this situation but have no alternatives.
It is very hard focus on anything. Thank god, for the music that is helping me now.
Message to a tennis friend: (my words are in bold)
I am having MORE problems with my eyes. I had another episode of bleeding inside my good eye. I’m very discouraged and do not feel like playing tennis tomorrow. I’ll play if you can’t find anyone – but I am definitely not in a good place.
My friend’s reply:
I don’t have another player but what can I say if you don’t want to play???
I’ll be there. I’m just having a tough time. But playing is probably good for me, even if my eyes are crummy. I have acuity, but not clarity. It’s hard to explain. I’m not blind, but I hate what is going on!
This is how my vision was before PVD.
The next day, I drove to play tennis. I hardly had slept the night before. My mind crackled on and on; like a radio blaring it was noisy.
My eyesight could not possibly be comparable to my dead son, but I was grief-stricken. How would I live with this situation? What was my alternative? As I drove, I concentrated so as to drive safely. But blurriness and shadows were swirling everywhere.
Later in the day, I would see my eye surgeon. However, I knew that there was nothing he would be able to do to help my vision. Seeing him was awkward. He felt he had done his part. He was an excellent surgeon and my cataract surgery was considered successful. Unfortunately, I had so many complications, which were probably a result of my extreme nearsightedness.
I openly sobbed as I drove. This was too much! I put on music to soothe myself and heal my pain. But still, pain and sadness were shooting through every fiber of my being.
The last thing I wanted to be doing was to be playing tennis at a country club. My Friday game was normally played at a backyard tennis court. But today it had been scheduled at this club because our usual court wasn’t available. I hoped I wouldn’t see anyone I knew. I wore dark glasses and held back tears as I exited my car.
My body was heavy and I felt very vulnerable as I held my racquet. I began warming up and was grateful that I could still hit the tennis balls with my annoying eyesight. This was certainly better for me than hiding in my apartment.
After a short while, I decided it was actually a beautiful day. I closed my eyes and felt a soft breeze. I inhaled the aroma of chaparral from the nearby hillside. Perhaps life could still be decent, even if my vision stayed this way. I was determined to find a way.
I was introduced to another woman player who was filling in for our group. When I told her I was going through a divorce, I didn’t want her to feel sorry for me. I quickly let her know it was my choice and briefly shared my story. Then she said, “Well you must be happy about your decision, because there is definitely a glow coming from you.”
I was surprised to hear that. I didn’t feel like there was any glow about me. I accepted her words and was pleased that despite my pain I could still smile.
The two hours went by and as soon as it was over, I fled to my car. I needed my music to soothe me immediately. I was in an emotional crisis because I began crying again.
But playing tennis was excellent information for me. My eyesight was acceptable because I could still hit a tennis ball. I had actually played fairly well and that amazed me.
Later that day, I had an appointment with the ophthalmologist who had done my three cataract surgeries. Just as I expected, he explained to me that no treatment existed for annoying floaters; eventually I would get used to them. He examined my retinas, and they were intact; I was grateful about that. He did say that my dryness and inflammation could be treated with another eye drop medication. I left with a prescription. He said it would take at least several weeks before I would notice any improvement. His last words were, “Do not call me for another appointment until at least six weeks go by!”
I walked to my car with my eyes still dilated. My discomfort was so intense, that I began to cry again as I drove home. I stopped crying once I put on my music. Over and over, I thanked god for my musical elixir.
It was clear to me. My annoying eyesight was sucking the joy out of my life.
It made it difficult for me to concentrate and to do many things. It gave me headaches, especially when I was doing artwork. But I could still draw. I could drive. I could still work with my computer and play tennis. How fortunate I was!
My greatest challenge was to find my joy again. I suffered for so many years with grief, and was a zombie for decades after that. My journey had brought me boundless joy. Now I was sad and grieving for my former eyesight!
The insight from this was profound. Perhaps god had another message for me, since the word “insight” includes sight!
Grief is part of life.
In an instant, we can lose something that we take for granted. Time might heal, but moves slowly when you are in pain.
No one else can truly know of our pain unless they are also living with it. I do maintain hope that I will feel better soon, but at this moment I am simply putting one foot in front of the other.
I just wanted to update everyone about my eyes etc. On Tuesday, I had laser treatment on both of my eyes to clear the remaining cataract that intruded upon my vision.
An email update written April 7th 2013:
Hi friends and family,
I just wanted to update everyone about my eyes etc. On Tuesday, I had laser treatment on both of my eyes to clear the remaining cataract that intruded upon my vision. The complication I had was very common and almost immediately I could see that everything was brighter. But once the dilation wore off I saw numerous dark floaters, which was something the eye doctor told me I would have for a few days.
Unfortunately, the problem in my left eye is still quite pronounced for me. When the gel in my eye separated from the eye wall, there was some blood inside my gel. That is causing the blurriness. The doctors have told me it will improve, but it will take time – possibly even a year until it is absorbed.
All of this has been very hard for me to deal with. I try to stay positive, even though I often have a sensation like I have cobwebs in both my eyes. I was told there is no reason for this.
In the meantime, I am thankful that working on the computer is not a problem for me. It is when I’m not working, that my eyes bother me. Although this is challenging, I celebrate the many beautiful things that are happening in my new life.
I am thrilled to be working on a wonderful illustration assignment, which is going quite well. The income will allow me to continue singing and moving forward.
dryeyediaries 