#29 ALL OF MY TEARS

I think laughter is so healing and big help in dealing with chronic pain.

This post is taken from my Facebook Dry Eye Support Group. I am sharing something that actually carries a little bit of humor.

LORI: Seriously? I have a drop for every occasion!

Lots of Tears

SUSAN: Nice stash! I know. I have about six different ones myself, including the ones that didn’t work!

LORI: My hubby says my bathroom looks like an isle at Walmart!

‪JOYCE: Did you break into my house?

CAROL: Looks like my closet. Plus some.‪

MARGARET: I have a few too. But mostly stick with two.

JUDY: Oh, drop it! I sensed your post was “dripping” with sarcasm. I sure wish I had something more “refreshing” to add! (I love puns!)‪‪

LORI: You’re awesome Judy!

JUDY: Aw! It’s nice to know my puns are appreciated. My puns appear in the “blink of an eye!” But I just can’t “Systane” them!

LORI: I actually have eye drops on my shopping list today and my husband says ARE YOU SERIOUS? Lol. I think I need a 12-step program.

‪CAROL: There’s probably a 12 Step Drop lol!!‪

KOSTA: The first step to beating addiction is admitting you have a problem.‪

JUDY: I think it’s the other way around. We already know we have a problem and the “addiction” is really just a desperate coping measure!

‪ KOSTA: Judy, you’re right.

‪LORI: I put drops in when I’m alone. I hide the amount of times I put drops in from my friends/family. I lie about the $$$$$$$$$$ I spend on my drops to my husband. I sneak around to different stores when I find a sale on drops but I don’t have a problem though. I could stop if I wanted to . . .

DONNA: This whole post is cracking me up!!! My dear friends, I needed a laugh!!!!

JUDY: Me, too. I think laughter is so healing and big help in dealing with chronic pain.

‪© 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.

#26 IT’S ONLY DRY EYES

Probably the most difficult part of dealing with my condition is feeling abandoned by doctors.

Probably the most difficult part of dealing with my condition is feeling abandoned by doctors.

It began with my first visit to Urgent Care with terrible pain in my eyes. I was examined and sent home after being told, “It’s only dry eyes.”

Eventually, I was given a referral to a corneal specialist. I was so hopeful I’d get some relief. But instead, he told me, “Your condition is incurable, and you’ll have to learn to manage it. Continue with hot compresses, eyelid wipes and use Restasis eye drops twice a day.”

As I left that appointment, the pain in my eyes felt overwhelming. I wore sunglasses and tears were streaming down my face. The irony of tears and dry eyes didn’t escape me. I openly sobbed once I was inside my car.

On my last post, I shared the sad feelings expressed by “H” – a young girl who was suffering and lonely. She finally went to see a new doctor.

She posted below:

“H:” Is there anybody who has normal Schirmer results but still has so much dryness? My doctor told me that I don’t have dry eyes. She said my results were normal and that I don’t have Blepharitis either.

But I have terrible irritation and my eyes really have pain. When I cry or put drops in I feel better. She said to stop searching for dry eye treatment and to get psychological help. But I really suffer; she doesn’t understand. I don’t know what to do …something is affecting my eyes too, but the doctor cannot find it.

“M:” Go to another doctor and see if they confirm those results, without sharing that you’ve already been to see another doctor.

“H:” ‪ Ok. I will do this. But doctors can’t see my dryness. I don’t believe them.

“M:” Me neither, the only thing I get is drops. I have not met one yet that knows about dry eye treatment. The U.S. seems to have some doctors that can help their patients. I’ve struggled to help myself.

“H:” Yes, I am tired of struggling.

‪ “M:” Please don’t give up. It’s definitely a struggle and I know how you feel. I used to cry after seeing the doctor, I felt hopeless, but over time it has gotten better.

”H:” I won’t be able to do my job or anything because of eyes. My eyes never heal.

“M:” Try not to think too far ahead because that brings stress and makes things worse, I know I’ve been there. It took me a long time to improve but I still get bad days. Stress is the worst thing for us.

”H:” Yes but I can’t prevent stress because of my eyes. I’ve seen so many doctors and they can’t find anything. The first one said, “You have dryness; you must have plugs.” Another one said, “You have MGD, and there is no cure.” The last one said, “You don’t have dryness.”

‪According to doctors I shouldn’t be suffering, but I am!

“B:” Go to another doctor, get plugs –  maybe they’ll do gland expression. My own tears are also irritating because the oil glands don’t work. Hot packs are a little help; mostly they are relaxing. Never let a doctor tell you it’s all in your head.

”H:” There is no gland expression here. I can just do hot compresses at home.

‪”L:” You might try to get psychological; I know it has helped many other people.

“A:” It sounds like neuropathic pain, which ABSOLUTELY is related to dry eye.

“H:” What can I do for neuropathic pain? I really suffer from it!

Writing this blog put me in a place of looking back at all of my doctor visits related to my dry eye condition. I sorted through every office visit summary and copied whatever diagnosis was there:

BILATERAL UPPER AND LOWER EYELID BLEPHARITIS

DRY EYE SYNDROME, BOTH EYES – Primary

OCULAR PAIN, BOTH EYES – PRIMARY

VITREOUS OPACTIY, BOTH EYES

DEGENERATIVE MYOPIA, BOTH EYES

POSTERIOUR VITREOUS DETACHMENT, BOTH EYES – Primary

BLEPHARITIS (INFLAMED EYELID)

 

VISION DISORDER – Primary

Not one of them mentioned MGD.

Meibomian gland dysfunction (MGD) is one of the most common diseases observed in clinics; it influences a great number of people, and is the leading cause of evaporative dry eye.

The more that I read about dry eyes, the more convinced I became that I had MGD. This became a new road for me to follow.

cropped-closed-eye-copy.jpg

© 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.

 

#19 I LET GO OF FEAR

The day after I returned from my vacation, I had an appointment with a top eye specialist.

Lighthouse Eye

Originally posted on April 11th, 2015:

Two weeks ago, I visited the state of Oregon. While driving along the beautiful coast, my son and I stopped at Yaquina Head Park and toured a remarkable lighthouse.

At the end of an educational lecture, we were able to climb a tight stairway inside that led to the top of the lighthouse. On our way down, my son stopped to take a picture of the spiral staircase. I thought his picture eerily resembled an eyeball! (You can see his shoes at the top.)

I snapped this while I was waiting.
I snapped this while I was waiting.

The day after I returned from my vacation, I had an appointment with a top eye specialist. Before seeing the doctor, I was given a few tests. A technician manually checked my field of vision; it was tiring for me to concentrate and look for tiny flashing lights. Afterwards, she drew pictures from her results to map my “blind spots.”

My appointment did not yield any new information to treat my dry eyes, unfortunately.

The specialist recommended that I try plugs in my tear ducts again. Plugs never helped, and I still had two that were inserted years ago.

This ophthalmologist then told me that my dry eyes were a result of poor tear film. I asked him if I also had Blepharitis (eyelid irritation), and he said that was secondary, a result of not having enough lubrication.

My first big surprise was to find out that I needed new glasses! I was never informed after cataract surgery that my vision could change again three years later.

At first, I was embarrassed to think that perhaps some of my fogginess was because my glasses needed to be changed. But I paid a lot of money for this appointment, so I was glad that I was given such a thorough eye exam.

But I wasn’t expecting to hear the more shocking news that followed.

He told me that the pressure in my right eye was very high and there were visible indications of glaucoma damage. He gently told me to get an appointment at my HMO with a glaucoma specialist – not just a regular ophthalmologist. And he told me not to wait.

I left his office and sat in my car crying. I waited until I felt well enough to drive. When I came home, I crawled into bed. I was devastated.

I didn’t really want to share my upsetting news with anyone, but then I received a call from my friend who had recommended this specialist.

I told her tearfully, “You know, you probably saved my vision – I don’t know how to thank you!”

My friend was very comforting. She acknowledged that I’ve had a lot of challenges to go through since my divorce and my parents’ deaths. I was very grateful for her.

Beach rocks

It was almost 4:00 pm and I decided to call my HMO to schedule an appointment. The sooner I got that appointment, the better. It was a Friday afternoon before Easter weekend, so I didn’t expect much.

The lady on the phone said, “There aren’t any ophthalmologists working next week; they are all gone for Spring break.” I thought she was kidding when she said Pediatrics would be covering that department.

I told her I was very concerned about my eye pressure and wanted an appointment with a Glaucoma specialist. She said, “You will not be allowed to see a Glaucoma specialist. Only patients who are not responding to conventional treatments are allowed to see one. Any of our eye doctors can treat you.”

I said, “Well, what if this gets worse before I see a doctor? I don’t want to have my eyes permanently damaged!”

Then she asked me, “Are you in pain?”

I answered, “I’m always in pain. I have dry eyes.”

Her reply was laughable. She retorted, “Well, honey, just put in artificial tears until your appointment.”

I took a deep breath. There wasn’t enough fire in me for steam to come out of my ears when I heard that one.

But sometimes, God can appear in moments that seem like coincidences.

Suddenly she said, “Oh! I see that there is an appointment available and it’s only in a week and a half. It just so happens that it is with our only Glaucoma specialist – so you are very lucky.”

I marked down the appointment for April 16th.

Japanese Garden Green

My eyes were still dilated and the light outside was painful even with my dark glasses on.

I was overwhelmed trying to grasp the things the eye specialist told me. My head was spinning with a zillion questions: Did he say I had Glaucoma for sure? Was the damage he saw permanent? If my next appointment was in 13 days, could my eyes get worse? Was I was going blind? How would I adapt and manage that?

I was spiraling down into depression. It was too much!

Azaleas

Two weeks later, I saw a glaucoma specialist. She ordered a battery of tests and then sent me a message. She completely disagreed with the first doctor and said she saw no evidence of glaucoma. Her recommendation was that I come back in a year to have my eye pressure checked.

I let the outside specialist know what my HMO eye doctor said.

He responded with this, “I am pleased your pressure was lower and symmetric on that day. Often there is a delay in diagnosis and treatment of glaucoma due to fluctuations in pressure, just as hypertension may not be diagnosed on a day when the blood pressure is normal. I would recommend that you be evaluated at least every 4 months, not just with pressure checks, but also with quantitative perimetry and ocular coherence tomography for measurement of retinal nerve fiber layer thickness. Ultimately, if you do have glaucoma, one will see a progressive deterioration in those studies.”

I advocated for myself and made sure that my HMO would follow this outside specialist’s recommendation by thoroughly checking my optic nerve in 4 months. As I result, I have an appointment scheduled in July.

Brilliant Sun 2

I love puns, so I’ll start with one here.

All of this was a real “eye opener.” I was so down when I went to see the outside specialist. I wasn’t expecting worse news about my eyes and couldn’t handle hearing I had another eye disease.

But then I realized that worry and anxiety didn’t serve me in any way.

One benefit from that appointment was that I had new glasses, which helped me see more clearly. As a result, I felt a lot better.

I went from total panic, to complete gratefulness. I was able to do so many things with my eyes. I relied on to drive, illustrate, play tennis and edit music. 

I decided I could accept my eye pain and somehow find a way to live with it.

These lyrics from my original song "Clear" carry so many meanings for me!
These lyrics from my original song “Clear” carry so many meanings 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.

#18 I NEVER WANTED TO FLY ALONE

I am excited share many beautiful photos on my blog from my trip last week to Oregon.
I am excited share many beautiful photos on my blog from my trip last week to Oregon.

Originally posted on April 3rd 2015:

I was determined to overcome my eye condition. Planning a trip seemed like a way to prove to myself that I was still able to enjoy life. I decided to go to Oregon; it would be an opportunity for me to meet the wonderful art directors I worked with. For the last three years I had received many terrific assignments from the Tillamook Cheese Company and their art agencies were located in Portland.

My 18-year-old son asked if he could join me and it sounded like a great idea. My post title is the first line from my song “You Are My Wings.” I recently sang a vocal for the new arrangement of that song, so those words came into my mind. Yes, I was glad I wasn’t flying alone!

Our flight left late at night. My son took the window seat and was excitedly snapping pictures after take off. Both of us agreed the city looked like glitter below us.

As I continue this post, I am going to intersperse comments from people from a dry eye support group I belong to on Facebook. Their words will be in different colors and represent many different people. My own words to the forum will be in black bold. The post began with one member voicing her worries about taking a trip with dry eye disease.

Sparkling City

Since I don’t know anyone personally who has dry eye like I do, I’ll cry to you guys about it! I’m going on a trip with friends later this month. Normally it would be a fun trip and I’d be excited about it, but now that I have this dry eye thing I’m dreading it. This condition, which sounds like a mild inconvenience to people who don’t have it, is really having a big negative impact on my life. I know there are much worse things. I guess this is how it’s going to be from now on and I’ll have to adjust, but right now I’m still shocked at how debilitating it can be!!

I completely understand. I’ve felt reluctant to take any trips away from home because of my dry eye condition. I like to “feel safe” and be home when the pain overwhelms me. It is one of the sadder realizations I’ve come to by having this horrible condition.

Sparkling City 2

Our flight would arrive in Portland near midnight. My eyes were constantly bothering me in the airport; once my son and I were on the plane I closed them. My son was so excited and I was very happy he was with me.

I decided to listen to my music for a little while, but then I became very emotional and tears spilled from my eyes. It was embarrassing and I wasn’t sure if I was crying from joy or sadness. But I did notice that my eyes felt better after releasing those tears.

Ocean sunset gray

It’s a stunner, isn’t it? People have no conception of the life impact unless they’ve experienced it. The adjustment process is not easy but you will get there! Sometimes the mental challenge is as big as the physical one… that gradual shift from feeling defeated and limited to grappling and taking control, embracing the tools and strategies to make it through.

Your words echo mine exactly…the part about others not getting it really rings true.

The worst part is other people’s complete lack of understanding! If someone asks what’s wrong and I answer that I have dry eyes, they look at me like I’m stupid and say, “Why don’t you just put drops in?” I SO feel your pain
!

Mossy Stream

Our plane landed and my eyes hurt; I poured eye drops into them, hoping they would calm down. The fogginess and irritation were driving me crazy. I followed my son through the airport and prepared myself to drive a rental car.

During the plane ride, I kept digging through my purse, hoping I’d find an important piece of paper. It contained the gate code and room number where we would be staying.

Before we boarded the plane, I called my older son. He looked in my desk drawer and didn’t find it there either. I wondered how it had disappeared.

My youngest son squeezed my hand and said, “Mom, stop worrying about finding that paper. We’ll figure out a way in. Why don’t you just look at this as an adventure?”

With those words, I grinned. My son probably learned that from me!

Waterfall and Log

I had an airport TSA guy question me as to why I had so many eye drops. After all, I was “just going to New York.” I fear running out of drops in the middle of a trip, so I carry a lot. But other than being prepared, don’t let it change your life too much. The people close to me understand now that I am capable of conversations with my eyes closed. Keep getting out there and enjoying life.

That’s why I love this group, full of people that understand exactly how crappy this condition is.

You must know that there are others like me who share your pain, I seldom go anywhere and don’t want to think about traveling for vacation.

Japanese Garden Bridge

We safely reached our hotel and I was collapsed in bed. I was amazed that everything had gone smoothly. My son was right; it was an adventure.

I also realized that taking this trip with my son was joyful and that was the reason I had cried earlier.

Brilliant Sun

I completely understand what you are going through. After dealing with eye problems for a year I finally went to the doctor; Severe Chronic Dry Eye was the diagnosis. So far, I haven’t found much relief, but being in this group has helped. You don’t really understand what it is until you have it, and then you can sympathize with anyone else who has it.

It might take a long time to feel better but it will happen. Don’t get frustrated. I know we have all thought that we’ll feel like this forever but things do change. And lately there have been a handful of new drugs in clinical trials that will hopefully be put on the market.

Blossoms

I used to not go anywhere, but then I started to face my fears about socializing with others. I think it’s because you never know how your eyes will behave and stress doesn’t help. Usually, I just say to myself nobody’s perfect. I just tell people straight out that I have eye problems. It has taken me ages to get to this point and I have a lot of anxiety.

I understand completely. This condition has completely changed my life. I’ve had to quit my job. I am doing some volunteer work now, but some days I feel so lost and alone. I miss the capable person I used to be.

Just get out; don’t let it stop you – don’t let it win. I am doing my best to travel and enjoying life with my husband at my side to hold my hand when I have to close my eyes because of the pain.

I’ve struggled a lot with the horrible dry eye cycle of sinking into hopeless depression – and having my eyes feel even worse when I’ve been discouraged. But I can say with complete honesty that I have good days where I accept this condition when it’s not torturing me. I miss the feeling of “normal” and probably always will. I guess this is the “new normal” and I’m grateful when it’s not like it was at the beginning! I cannot let go of hope and will continue to search for anything that brings relief.

Garden Waterfall

Even though I couldn’t escape from my foggy vision or eye pain, I thoroughly enjoyed exploring Portland, Oregon. I especially loved taking pictures at a beautiful Japanese garden. The koi were magnificent.

Koi in water

On every outing my son kept asking me, “Mom, how are your eyes?” I appreciated his caring but felt sad because I knew he was constantly worrying about me.

Beach scene

I think what’s hardest is not being able to depend on your eyes. I am a visual person. The discomfort of the dry eyes changed my life so drastically. I used to be a fairly social person. Now I feel like a hermit. It takes such an effort to get myself out the door many days. I feel so lonely. And it seems that my friends and family have moved on without me. I’m so grateful for this support group. It keeps me going.

Your words made me cry – so true. I am also very isolated and get sad when I see pictures of myself with bright open eyes. I can see my eye pain in pictures now. But other people don’t really see or understand that pain. My eyes are foggy and uncomfortable – but I’m not impaired like other people are with this disease because I can drive and work. Still, the isolation comes from not feeling great about being out and about – traveling, going shopping etc. When my eyes hurt, all I want to do is retreat.

Eerie beach 2

My son and I explored different beaches. He especially enjoyed a tour of the Yaquina Head lighthouse. Before heading back to Portland, we drove to Tillamook Cheese Factory. We were given royal treatment there and it was a most wonderful day.

Lighthouse

We all know this disease is horrible to the point that quality of life is adversely affected, even the ability to work. But worst of all, is the chronic pain, aching, stinging, burning that no one can understand. And the depression and anxiety that ensues because of the isolation and wearing down from constant pain.

Your stories have made me speechless. This is my life as well. I have to pick and choose why I leave the house because I know it could very likely trigger a flare up. It has greatly impacted my income and social life but, most of all, the uncertainty of the next “flare up” and the isolation has caused me anxiety and depression. It’s priceless to connect with others who understand this.

I think you summed it. Our eye issues cause detachment from life – and I miss the connections I once had. But ironically, I have learned so much from this condition about myself. I use this word a lot – insight. I’ve searched deep within to discover empathy and focus on small blessing to keep myself going. This is a precious connection for me to know that others understand the pain that is such a burden dealing with every moment of my day!

Grassy view

After touring the Tillamook Cheese Factory, I drove back to Portland through the Tillamook Forest. It was raining and my eyes were very concentrated on the road. After four hours we found a hotel near the airport that worked out well for us.

On the following day I planned to visit two different art agencies that I worked with on the Tillamook account. My son told me to go on my own because he wanted to relax in the hotel all day. I was slightly disappointed at first. But I didn’t say anything; the last thing I wanted to do was drag him along.

Being alone made me anxious because the streets of Portland were very complicated. It was going to rain and even though I had GPS, with my eye condition it was tough. But then I realized that I wouldn’t have my son barking commands at me. I could even sing in the car if I wanted to.

I took a deep breath and left myself plenty of time to get there. Everything worked out fine; I found the two agencies and even managed to stay dry somehow!

Rainy City

We went home the next day and I was proud that I had been able to travel despite my eye condition. The day after my return, I had an appointment with a top eye specialist and was hopeful that he might be able to help me.

It has been very hard living this way. I have definitely lowered my expectations about being “joyful.” I only want to live my life without constant pain.

During this trip, I ate far too much. I knew it was to numb myself and that it was not good for me. My awareness of that made it even worse.

But celebrating my courage is important to me. I continue to hold onto hope even though sometimes it feels like I’m losing my grip.

Seeing the beautiful pictures brings my smile back. And of course, knowing that my son will always have wonderful memories of our time together is the best part of all.

in a forest Mossy Forest

A misty beach Beach rocks Judy against beach rocks

I'm in awe

© 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.

#17 MY JOURNEY IN SIGHT

I kept looking for something that might help my dry eyes. I decided to try an acupuncturist who came highly recommended by a good friend.

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.”
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.

nasturtiums

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.

depressed eye

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.

Needles 2

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

When I began to write with more detail about my eye issues, I grouped those stories under the title of “My Journey in Sight.” I was hoping that perhaps through my experience I could help other people suffering with similar problems.

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

This was originally posted on November 7th, 2014:

Over the past two years, I’ve struggled with some major eye problems. Most of my energy was spent trying to cope with pain and at the same time search for anything that might help me.

When I began to write with more detail about my eye issues, I grouped those stories under the title of “My Journey in Sight.” I was hoping that perhaps through my experience I could help other people suffering with similar problems.

I found that title so ironic because my blog “My Journeys Insight” began as a blog of self-discovery and had nothing to do with eyesight. But my eye problems have brought me insight and the additional pun just enhances my blog title.

I’m hoping this will be the last part of my “eyesight series” for a while. My eyesight journey has been challenging, but thankfully I have reached a better place and want to share where I currently am.

Here is a brief summary of my eye issues:

  1. In 2012, my eye prescription changed dramatically within two months. I had poor vision in one eye and a lot of fogginess at night. I realize now that some of this might have been due to dry eyes. The eye doctors told me I had mild/moderate cataracts so I went ahead and had cataract surgery on both eyes.
  1. Six months later, I had Posterior Vitreous Detachment (PVD) in both eyes. This is considered a common age-related occurrence, but it was shocking for me. Cataract surgery often leads to PVD and I was very near-sighted, which increased my risk for complications.
  1. I had a lot of trouble adjusting to the blurs and dark floaters from PVD. I was able to work on my computer and perhaps because of PVD and intense staring, I experienced unbearable pain in my eyes. I went to Urgent Care and was told I simply had mild Blepharitis and dry eyes.
  1. My dry eye journey was lonely and torturous. The first cornea doctor told me that nothing else could be done. (Other than my current regimen, which was wiping my eyelids, using a hot compress and Restasis eye drops).
  1. For two years I lived with constant pain and fogginess in both my eyes. I could see well enough to work, drive and function outwardly. But my condition led me to become deeply depressed and withdrawn.

I did change doctors; I found another corneal specialist who was willing to go through a long list of dry eye remedies. It was very discouraging when nothing brought relief.

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

I see my eye problems as a metaphor for many other human conditions – so I’m hoping that anyone reading this could relate it to other ailments and struggles. Because hope was something I held onto during grief, I found many of the exchanges on the dry eye forum I subscribe to very touching. I share excerpts of posts from different people over the last few months that paint a picture of what people with dry eyes deal with.

Is dry eye considered a disease or a syndrome??

I would call it a condition that is chronic, which means there is no cure but with regular maintenance the symptoms are bearable in most cases….

The technical term for dry eye is PITA. Pain In The Ass!

I don’t think recovery is possible anymore. All I read everywhere is pain, pain and pain for years with and NOTHING helping. I don’t think life is worth it with this. I’m losing hope.

Don’t lose hope! Maybe we cannot recover completely, but I have hope we all can find a way to live with it, or at least have some good days without as much pain or redness.

I also don’t know anyone personally who has this disease. Before I was in this group I felt very alone. I think it helps “talking” and reading how others cope with it.

Hey, the last thing you can do is lose hope. Just try to live your life one day at a time. Every day new discoveries are made, I know recovery may be slow and painful, but I am sure it will happen.

This group has already taught me so much. My improvement isn’t great but it is better, don’t lose hope! We must never lose hope!

Sometimes I feel like I’m missing something. You have all these eye doctors saying dry eye is very treatable and then all of us patients who suffer on a daily basis. What’s the deal? It’s a constant struggle for some of us.

Dry eye isn’t so much a curable condition, as one we have to manage – at least that is how I feel
.

I’d just like to put this out there. I’ve done a lot of research and I’ve come to one conclusion. The treatment of dry eye takes a long time. Certain medical abstracts talk a lot about patients getting discouraged with their current treatment and quit and go on to the next thing. My point is find a doctor that can give you the best diagnosis and don’t get discouraged when you don’t feel better with treatment after a month or two. I’ve definitely improved although not close to 100% but I’m much better than I was when I first started.

I have had dry eyes for 26 years now and I did give up. I felt like no matter what I did nothing was helping, so I did nothing for years. Oh, how I wish I could take those years back and have a redo! I just had surgery for recurrent cornea erosions on Friday because of this.

The problem I have with different treatments is that it seems like any treatment I try seems to irritate my eyes more. My corneal specialist has said to not continue a treatment if it hurts my eyes.

I think I’m gonna explode. Sorry to vent, but I miss my old life terribly. I’m so sad. I’m 26 and can’t do anything except sleeping, staying home. 
I just want to be free, to live normally, to be happy again…

This disease is so much more psychological than anyone WITHOUT the disease realizes. It’s a major hit to self perception/confidence, as everyone thinks we either cry all the time, are hung-over, stoners, or don’t take care of ourselves. Be strong, tell people about your disease! Tell them when it hurts, when you know it looks bad. Be who you are, unapologetically. Come to us for support and let’s solve this dilemma together!

I am afraid I will have to live with this painful condition for the rest of my life. Either I can give up or stay strong and see what tomorrow holds…

Believe me, after almost 40 years with this condition I should have thrown the towel in long ago. I just keep searching and searching until I find the right doctor and/or the right medication. Promise me you won’t give up. We are all here to support one another. Feel free to drop me a line anytime when you are feeling down and hopeless. There is hope!!!

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

Until I joined this dry eye forum, I felt very alone with my eye pain. I learned so much from other people who were going through similar challenges. Two important lessons that I learned while searching to help myself were:

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

    I was extremely nearsighted for most of my life and comfortably wore hard contact lenses from the time I was 11 years old. I painted detailed illustrations without any problem.

    As a 55-year-old woman, I could spend a lot of energy wishing my eyes were the same as they were even five years ago. Around the time shortly before my father died and my separation after a long marriage, I began having trouble seeing. I’ve often wondered if the symptoms I had at that time were related to dry eyes.

    My cataract surgery became an ordeal when I had to go back for yet a third surgery – a cortical chip was left behind. Then there was a capsulotomy, which was a laser treatment for the edge of the cataract that intruded a few months later.

    But it was the PVD that was very upsetting for me. Every moment of my day was challenging because of the all the fog and junk in my vision.

    My own son told me, “Mom, I can see why you say things are foggy. Your eyes look clouded!” I often wished I could pop out my cataract lens implants and clean them.

    Living with fog and floaters was one thing, but when I had constant pain it was torture. How does a person live with pain every moment of their day? I know many people who do and I am heartsick imagining it.

    Within the last month, I’ve experienced improvement with my dry eye condition. I still have dense floaters and fog, but the pain has lifted and my attitude has changed. All I can say is that I am so relieved.

    I accept now that my vision is adequate to live my life and is something I will continue to adjust to. Being free from pain is a gift that leaves me crying with gratefulness.

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

    My improvement began when I was at a very low point. The remedy I thought would help me the most was serum tears (made from my own blood). Unfortunately, I had a bad reaction and thought that the tears were made incorrectly or compromised.

    After writing about how discouraged I was, a friend from the on-line forum reached out to me. Her name was Susan and we corresponded a great deal to support each other. Susan introduced me to Judi who was the leader of a dry eye support group in another county. Judi had asked Susan if she could contact me because she was very concerned about my serum tear reaction. Judi sent me a lot of information, spoke to me on the phone and we emailed each other.

    Two months ago, I traveled to meet Judi and attend one of the dry eye support group meetings where she was a leader. It entailed about five hours of driving and luckily Susan’s husband drove us to the meeting. The time went by easily with them and I didn’t mind the outing.

    The meeting was informative. But my reason for being there was to meet and personally thank Judi for helping me. After the meeting was over, Susan took a picture of Judi with me.

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

    Because Judi had found a lot of success with serum tears, I decided to try again. Two weeks ago, I had new serum tears made from another batch of my blood. This time the tears were 100% serum, instead of 20% like I had the first time.

    After putting only one drop in each eye, a few hours later I experienced weird sensations and my eyes felt much worse. It took about five days before my eyes felt better and I did not use any more serum after that.

    I was disappointed that the remedy I was certain would be my “cure,” was not the case. It was so frustrating; instead of serum helping, it was hurting me!

    Blood Draw 2My improvement began because of Judi and her willingness to guide me. Such simple things made a difference and weren’t very difficult for me to implement.

    Drinking a lot of water (at least 10-12 glasses a day) seemed to make the biggest difference. And then there was a certain technique of using an eye gel at night.

    Judi had explained to me on the phone that her “gel remedy” was something she discovered on her own and was very proud of; it helped to combat a condition with a very long name that made dry eyes worse.

    The condition was known as Lagophthalmos, which in simple words means that eyelids aren’t fully closed when a person is asleep. Judi asked me if someone could look at me when I was sleeping so I’d know whether my eyelids were closed. The thought of asking one of my sons to do that seemed kind of strange. Then she asked me if my eyes hurt when I woke up in the morning; I told her that they most certainly did.

    Her remedy involved using Genteal Gel (I tried another brand without results). I always wondered why anyone used gel eye lubricants. They blurred my vision and didn’t bring any kind of relief.

    The trick was to get my eyelids to stick together so they would remain closed when I was asleep.

    Judi said, “Be absolutely sure not use any other eye drops for at least half an hour before going to bed. You want this gel to be very sticky. Put it in and close your eyes tightly. After five minutes, your eyelids should stay stuck together.”

    I followed what she said, and woke up in the morning without pain. This lady was a miracle worker!

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

    I wrote to her and said:

    On Sep 13, 2014, Judy wrote:

    I was so excited to share with you that I had some better days with my eyes recently. The Genteal gel at night is helping and especially all the water I’ve been drinking. I couldn’t believe that yesterday there was a moment when my eyes actually felt almost normal!

    I’m so glad I was able to meet you. I know I’ll be writing about that day. Thank you again so much, Judi!

    Hi Judy,

    I am so glad that you are finally seeing some improvement in how your eyes are feeling. One of my greatest joys in life is knowing that God has chosen me as the vehicle to share His blessings given to me with others in need and in pain. I pray that this gift never ceases and He continues to find ways to use me to make a difference in others’ lives in whatever way that might be.

    I am thrilled that the Genteal Gel is working for you. I am surprised how many people are never diagnosed by highly-trained eye specialists about this condition. When I was first diagnosed with Lagophthalmos my reaction was, “Oh, no! I had another incurable disease.”

    I was told I could have weights sewn into my lids. Then I was told to tape my eyes shut with an X over my eyes at night, which tore the tissue at my eye because it is so delicate. I was told to cover my eyes with saran-wrap at night, which was horrible.

    I sat and prayed one night and in the morning my friend suggested I try Genteal Gel. She didn’t mention the way I was to use it, by not putting other drops in beforehand – or holding lids closed till it dry. But somehow God showed me the way.

    HE SEEMS TO ALWAYS MAKE A WAY WHEN THERE SEEMS TO BE NONE.”  AND SO BETWEEN THE GENTEAL GEL AND THE AUTOLOGOUS SERUM, HE HAS GIVEN ME THIS GIFT OF FREEDOM FROM PAIN AND I AM DOWN TO 4 DROPS A DAY.

    I can’t tell you how grateful I am that I can share this. I pray that you can get serum that helps you.

    Thanks again for the great news and I feel your condition will continue to improve and pray God also uses you to share His blessings going forward.

    Judi, just for fun, I’m sharing what was doing on my computer tonight; it’s one of my songs. I’m a passionate songwriter. I don’t market or sell anything yet but one day I will. 🙂

    Ps. When my eyes are better, it will be much easier for me to reach out to find a larger audience. I see God wanting me to have this healing time and it has enabled me to stay close with my children and focus on creating music every day. I have over 60 song arrangements now.

    Wow, what a voice you have – it sounds angelic!!! I look forward to listening to it all… Such a gift and blessings!

    Thank you so much for helping to lift me up. The depression that resulted from my eye pain has been overwhelming. For this past year, I’ve just stayed inside a lot and have been reclusive.

    I didn’t sing for 30 years and after my 5-year-old son died in 1992, I never thought I’d sing again. I picked up my guitar four years ago and it healed me and changed my life. I believe God gave me music to share, to heal others and myself.

    I don’t consider myself to be a great singer. I’ve worked hard to improve so I can share my songs with the world. Two years ago, I could hardly keep my pitch. It’s a process. Singing for me is all about opening my heart and allowing my emotions to be free. Your compliments mean a lot to me.

    I’ve found a lot of joy with my writing and music. I am peaceful and try to help others who suffer with grief and never imagine feeling better. I’ll look forward to seeing you again in January when Susan and I drive out to the support group meeting again.

    Few can understand the debilitation the loss of a child causes. We lost our son at 42 with two young children to lung cancer, another unexplainable debilitating tragedy.

    Oh Judi, I am so, so sorry about your son! Now we are not only joined because of our eyes, but also as bereaved mothers.

    I could tell when I met you that we would be friends – You are so beautiful and your smile is so kind and loving. Once again God, in His wisdom has brought another special person into my life – there are no mistakes.

    Love and blessings, Judi

  2. Judy & Judi

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

#14 MY JOURNEY IN SIGHT

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

Originally Posted on September 12TH, 2014:

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

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

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

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

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

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

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

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

I was open to it.

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

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

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

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

And her mentioning God really touched me.

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

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

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

Judi

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

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

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

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

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

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

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

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

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

The experience was quite spiritual for me.

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

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

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

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

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

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

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

How is that possible?

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

Coral Rose

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

#13 MY JOURNEY IN SIGHT

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

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

This was originally posted on September 9th, 2014:

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

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

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

Serum Tears and box

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

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

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

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

Serum bottle

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

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

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

Playing at Kulak's 12

Unfortunately, everything changed the next day.

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

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

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

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

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

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

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

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

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

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

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

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

Butterfly of death

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

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

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

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

Scared Eye

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

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

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

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

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

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

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

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

Now I felt embarrassed for insisting upon this appointment.

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

And my butterfly of hope was smashed to the ground.

Facebook Post on Blog

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

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

Susan and I

To be continued . . .

Playing at Kulak's 11

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

#12 MY JOURNEY IN SIGHT

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

Spider and the Eye

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

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

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

And then there were those other moments.

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

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

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

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

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

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

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

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

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

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

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

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

Sunset 3

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

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

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

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

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

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

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

Spider and the Eye B&W

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

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

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

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

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

Eye on Facebook

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

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

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

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

After I wrote my update, I received this comment:

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

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

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

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

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

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

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

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

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

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