# 46 I WAS HEALED

I remembered how I used to leave eye appointments with my throat choked with tears. When I’d get to my car, I’d sob for a few minutes before driving home. I was very thankful that those days were behind me now.

The scary header image I used for my blog, helped describe the awful feeling of having something sharp in my eyes 24/7.

It was a beautiful day. After much needed rain, the air was clear and slightly warm. Even though it wasn’t spring yet, the smell of blossoms caused me to inhale deeply.

I walked briskly toward the building where I had an appointment with my ophthalmologist. It had been 9 months since I had last seen my doctor. Even though she wasn’t able to “cure” my dry eyes, I always respected her. She would prescribe things that I asked for, such as serum tears. Few people ever had that covered by insurance, but mine were. Unfortunately serum tears and most remedies didn’t help my problem, they worsened it.

This would definitely be an interesting appointment because I wasn’t suffering anymore with unrelenting eye irritation and pain.

I managed just fine with my eyes now. Some days were better than others. On this particular day, my eyes were tired and slightly dry. It was probably due to spending a lot of time on my computer the night before. But I had escaped the lifelong diagnosis of dry eye suffering and for that, I was eternally grateful.

As I opened the doors to my ophthalmologist’s office, I wondered, “How had I escaped?”

I often shared my technique of using coconut oil. But other than one woman who said it was helpful for her, no one else seemed to have been cured as dramatically as I was. I remember how I used to search the dry eye support group site. I was envious of people who found relief. I tried so many things, and was devastated when they hurt my eyes. I had such a long list.

I tried acupuncture. It was relaxing, but my dry eye problem wasn’t alleviated.

Many items I ordered were expensive. If I couldn’t use them, I mailed them for free to any dry eyes sufferers who were interested. That helped me feel better about it.

Perhaps the key for me was that I never gave up.

I did rest for periods of time; I admit I was in complete despair. But it wasn’t giving up because eventually I went back to trying something else.

These are a partial list.

The last thing on my list was to go to a naturopathic doctor. I had heard of that before, but without a recommendation I had no idea who to trust. Plus it was expensive. So instead I tried dietary changes on my own without any improvement of my eye condition.

When I did go to a NT (naturopathic) doctor, I made many changes. (See posts: #40 A NATURAL PATH-PART 1 and #41 A NATURAL PATH-PART 2)

I attribute my cure to the coconut oil technique. The week before I started it, I finished a regimen of preservative-free allergy eye drops that were a disaster. My eyes were horrible and I went to see the optometrist who recommended those drops. She saw my irritation and told me to discontinue them immediately.

The night after that appointment I began using a coconut oil technique. I was desperate. I had waited on it because it was important for me to try only one thing at a time. That way, there would be no confusion about what worked or didn’t.

I put the oil into the eyecups and stared through it. The next morning I woke up. My eyes didn’t hurt. I couldn’t believe it!

From that day forward I continued using the oil at night. Once my eyes were better, I didn’t sustain many of the things my NT suggested. I went back to using some plastic items in my kitchen and I stopped using an air purifier in my bedroom.

I take a lot of supplements with my NT doctor and even underwent a six-week detox regimen. However, my eye issues resolved before I did this.

A few months after my eyes stopped hurting, I had an appointment scheduled for scleral lenses. They would be expensive and my eyes were much better. I debated about cancelling that appointment.

I’m glad I didn’t. The doctor suggested that instead of scleral lenses, I try soft daily contact lenses. I was amazed at how I was able to handle lenses again. These were different from the hard contact lenses I had worn for 40 years. I had to practice taking them in and out.

Initially, I received a multifocal lens for my right eye. It would allow me to have some close up vision, which was convenient. But when I’d go to a movie or play tennis, I didn’t like seeing blurry in the distance on that one eye.

A month later I asked my doctor to prescribe another lens for me that I could wear for those other situations.

I only wear my lenses about twice a week – mostly for social occasions or for a tennis game. My friends have told me I’m seeing the ball much better these days. I am elated for other reasons. Once my eye condition improved, I was able to concentrate on dieting. I gained a lot of weight during when I was suffering from dry eyes – eating helped me feel better temporarily. I took off 40 pounds in six months and was a new woman.

I feel tremendous empathy and sorrow for my fellow dry eye sufferers. I wish everyone could find something that heals him or her. I encourage people to keep trying. If I had given up, I would still be suffering.

I consider myself cured because I live my life without my eyes hurting or distracting me.

That doesn’t mean my eyes are 100% the way they were before this condition took over my life. There are times when my eyes are annoying, but I do not use any kind of drop. My problem became severe after I overused eye drops and eyelid wipes. And my eyes are still very different since having cataract surgery. I have a lot of floaters due to PVD (posterior vitreous detachment).

I’ve continued to use coconut oil before I go to bed, but not every day. If I miss a day, sometimes I’ll notice. Then I’m sure to use the oil again that night. I never use it during the day because my vision is affected and gets blurry from the oil.

I was ushered into an exam room for my appointment. The doctor’s assistant came in and asked me to look at the eye chart. I wore my glasses and asked her for results when we were done. She said, “Great! You saw 20/20!”

When my ophthalmologist came into the exam room, she carefully looked at my chart. “Your vision test was excellent,” she said warmly and added, “How are you? I haven’t seen you in a while. You are able to wear contact lenses? That isn’t something recommended for people with dry eyes.”

I was excited to share with her my amazing story. I began with explaining my coconut oil technique. I described how I put the oil in eyecups at night, and after the first attempt, my eye pain went away.

She nervously laughed but seemed genuinely happy for me. “Let’s take a look at your eyes,” she said. She put in yellow fluorescein drops and turned off the light.

“Your eye pressure is good,” she said. “Everything looks great!”

I wondered if she needed to see me again. I asked her if I needed to make an appointment to come back.

“It’s not necessary,” she said. “You don’t need to come back again unless there’s a problem.”

Just as I was ready to leave, she asked me about my multifocal lens. She said, “I didn’t know those were available. I also wear dailies and now I want to get one!”

I was amazed how I was sharing helpful information with my doctor. It felt great to be a pioneer of so many positive things.

As I walked out of the building toward my car, I took a deep breath of the springtime air.

I felt like I was walking on a cloud. I remembered how I used to leave eye appointments with my throat choked with tears. When I’d get to my car, I’d sob for a few minutes before driving home.

I was very thankful that those days were behind me now.

Once my eyes were better, I took a vacation to Costa Rica. It was heavenly to travel without pain!
I was able to scuba dive and see really well with my new daily contact lenses.
I really appreciated the gorgeous jungle scenery with my lenses while rafting on my trip. I did get wet and closed my eyes during those moments.
I closed my eyes while zip lining and wearing goggles would have been a better idea.

© Judy Unger and http://dryeyediaries@wordpress.com 2017. 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.

#43 I WILL SHINE – PART 2

Two months ago, I had the amazing opportunity to share my story. I was “discovered” by Remedy Health Media because of my inspirational writing about dealing with my dry eye syndrome.

Writing from my heart has led me to so many wonderful connections. Two months ago, I had the amazing opportunity to share my story. I was “discovered” by Remedy Health Media because of my inspirational writing about dealing with my dry eye syndrome.

I shared the experience of being filmed on the first part of this story:

#38 I WILL SHINE-PART 1

To see the video at Remedy Health Media’s site, click the link below:

http://immersive.healthcentral.com/vision-care/d/lbln/turning-points-chronic-dry-eye/

I think the most beautiful part of this video was sharing the experience with my childhood friend, Joni Lautman. We’ve known each other since childhood. I am currently living in the coop where I grew up – my parents are gone and I chose to live in my childhood apartment, rather than sell it.

Joni lived in the same coop and we played together from the time we were toddlers. In fact, there is a photo that was used in the video where we are sitting in front of the same apartment where Joni grew up.

This was taken in 1978
This was taken in 1978
This was taken for the video in 2016
This was taken for the video in 2016

The video film-shoot involved approximately 5 hours of film footage and 75 minutes of audio; all of that was used to create a 3½-minute video!

I wondered how the video would be edited and I thought they did a wonderful job. It was very touching and when I shared it with friends, I received many beautiful responses.

Music has helped me cope with many challenges since I began playing my guitar again in 2010, which was actually two years before I developed dry eye syndrome in 2012. The video tended to slant much more toward my rediscovery of music than to how I’ve dealt with dry eyes.

I was able to obtain the audio out-takes from Remedy Health Media. I have separated them into 6-8 minute segments, in case anyone has the time and interest to hear more about my story.

On this post, I share them as MP3 audio that can be downloaded. On YouTube, I’ve created a channel with them in a video format. That channel can be accessed with the link below:

https://www.youtube.com/channel/UCARZo5dhh2R2jrOeXiF0uog

Untitled

Judy & Joni Dialogs: (Click the blue links to play audio)

Judy & Joni Dialog #1

Joni and I talk about how we’ve known each other all our lives. I share how my dry eye problems began in 2012 shortly after cataract surgeries.

Judy & Joni Dialog #2

I talk about how I started to find hope of healing through my dry eye support group. The remedies were sometimes very discouraging when they failed, but eventually some of them did help.

Judy & Joni Dialog #3

I talk about how I’ve cope with guilt over managing better than other people with this condition. Joni mentions how she had never heard about dry eye syndrome before and I talk about the difficulties of finding relief while pretending I was okay.

Judy & Joni Dialog #4

I talk about how dry eye syndrome changed my thinking and made me more compassionate. My eye condition improved when I discovered my eyelids were irritated due to a possible allergy and I discontinued my regimen. Writing songs helped me express so many feelings and help me to cope.

Judy & Joni Dialog #5

I talk about how I coped with being a caregiver. When I began to write about my life on this blog, I released so much of my pain and sadness. I became a new person. Joni was “instrumental” in my rediscovering my music. Her encouragement was the reason I began to play my guitar again after 30 years.

Judy & Joni Dialog #6

I talk about how my music turned my life around. All of the songs I began writing were songs that helped me change my life. When I touch people with my music, I am fueled and completely inspired.

Judy & Joni Dialog #7

I talk about how I’ve coped with the depression from dry eye syndrome. I talk about how I maintain hopefulness. I believe in using the power of my thought to feel better.

Judy & Joni Dialog #8

I talk about healing from grief and how my music fuels my life. I am still struggling with dry eyes, but I am able to manage with it. Sharing my feelings through my music helps me to cope in a beautiful way. I am compelled to be honest.

Judy & Joni Dialog #9

For this video, I talk about my gratefulness over how my condition improved. I share hypnotherapy concepts that have helped me deal with my discomfort.

Judy & Joni Dialog #10

I talk about how support and understanding makes a difference when dealing with dry eye syndrome. I feel inspired if I can help others cope with their condition in a positive way. Words hold a lot of power and by re-framing my thoughts I am better able to deal with my eye condition and life in general.

Judy & Joni Dialog #11

I talk about how music saved me and made me joyful. Joni and I became close again and I became a different person. My eye problem is simply part of my journey. Learning to deal with it is something I do because every day is precious to me. I can’t wait to live any longer and plan to make the most of every day.

judy-joni-1 judy-joni-2 judy-joni-3 judy-joni-4 judy-joni-5 judy-joni-6 judy-joni-7 judy-joni-8 judy-joni-9 judy-joni-10 judy-joni-11

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#30 Judy and Carol

It’s horrible to think that the very regimen we use to help ourselves could cause problems!

Just a handful of some of the supplements I was taking to help my dry eyes. Unfortunately, they didn't do much for me.
Just a handful of some of the supplements I was taking to help my dry eyes. Unfortunately, they didn’t do much for me.

I have shared many posts of my correspondence with Carol, a good friend I made through my on-line Dry Eye Support Group. 

Even though our common topic was our eyes and adjusting to discomfort, we supported each other through other things, too. Carol was anxious to hear how my appointment went with a new eye specialist last month. 

I didn’t expect much from my appointment. I wrote to her my impressions when I came home:

Hi Carol,

While I was waiting for the doctor I asked the assistant if he was a dry eye specialist. Turns out he was a general eye doctor. I had requested a dry eye specialist referral, so I was a little disappointed. Still, he was relatively inexpensive compared to the other outside doctors I’ve gone to. So if it didn’t work out, I was only out $150.

This doctor was kind and very nice. He said that I don’t have typical dry eye – but he said my eyelids were severely inflamed, however. None of my doctors have ever explained that. He said I didn’t have blocked glands, Blepharitis, conjunctival chalasis, incomplete blinking or demodex mites.

He prescribed some steroid drops for me to try. He gave me three different strengths and said to try one each week and slowly the dose would get weaker. After that, he wanted me to try taking Clariton – it seems he thinks it’s more of an allergy. He gave me all of the medication (the were samples), which was nice, too. I am hopeful that maybe this will help me! It sure feels great to have some hope again.

If this fixes it, I’ll wonder why I had to suffer for 3 years. But not really – I just want to feel better. He did tell me not to use artificial tears so much. I was using them every hour.

A few days later, I wrote again to share:

Good morning, Carol. I am elated to feel some improvement – I think the steroid drops are helping with my discomfort. It’s not normal/perfect or anything, but that slight difference is wonderful and I’m hoping it will continue to get better.

It’s ironic, but my other dry eye doc had given me some steroid drops that I never used because of a bad reaction I had to one in the past.

I feel like this time, the doctor seemed more aware of things and I was willing to trust him.

I do think I made my problem much worse by using so many artificial tears. It was a vicious cycle.

My friend was very happy for me and supportive. But not long after my appointment, Carol wrote to me that she was very sick and going to the hospital. Her problem was “low sodium levels.” She told me she would write later on and I anxiously awaited hearing from her. She lived across the country from me. I was her email buddy, but how would I know if she were okay? I was worried.

Finally, I received a message from her.

Hi Judy,

Back home yesterday afternoon but not feeling so great today. Curiously, eyes felt OK while I was in hospital and had only Restasis Monday morning early. Not even that Monday night as I didn’t get moved from ER to room until 10:30 pm so had none of my typical meds, compresses, lid wipes, etc. during the stay.  Didn’t even shower from early Monday until I got home yesterday afternoon as I had all the cardiac monitor wires attached plus IV catheter stuck in arm for whatever.  It makes me wonder if I overdo the eye drops, cleaning, compresses, etc. Even my vision is clearer. So I know what you mean about that, too.

Wow, Carol – you had so much going on. Do you know what was wrong? You didn’t say much at all about it and I imagine you probably hate even talking about it. When I took care of my mom, she had a few hospitalizations from “electrolyte imbalance.” I remember her sodium levels were low. I could tell something was wrong because she became very disoriented. It sounds awful.

It is interesting about being off the regimen and feeling better. I am not using any more artificial tears; they made my problem worse. It’s horrible to think that the very regimen we use to help ourselves could cause problems!

Hi, Judy,

It turns out that the medication the urologist put me on to help control so many urges to urinate at night can severely deplete sodium. When he prescribed it, I asks specifically about concerns using it and he said “it is given to kids to control bedwetting” indicating to me it is harmless. I looks it up online and I did see it can deplete sodium but I eat plenty of salt so thought no more of it. Apparently it doesn’t work quite like that.

When I felt terrible on Monday, and by late Monday afternoon I felt like I was dying. Apparently the dying feeling wasn’t far off. Sodium level is “critical” and can lead to seizures and death.  Still not quite to normal and I still don’t feel great. So fed up with taking one step forward and thinking I am better then made to go 5 steps back and feeling it is hopeless. Ok, that is enough.

Aren’t you sorry you asked lol??!!

© 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.

 

 

 

 

 

#27 Judy and Carol

We need to take care of ourselves with this eye condition. Let’s never lose our hope.

I share my correspondence with my friend, Carol, from my on-line Dry Eye Support Group. Her words are in blue.

I’m not having such a great day – one of those “burning, stinging” days and trying to blink out that foreign body that cannot be blinked out. But I am thinking of your role modeling and trying hard to stay diverted. I’m feeling really down today because my daughter and two grandkids went on vacation and if I weren’t dealing with this eye mess, I would have been with them.

I am sorry that you weren’t able to go with your daughter. One day, you will feel better and when that day comes and you are “out and about,” it will be fantastic for you. Keep reminding yourself that will happen. Our mind is very powerful and can influence outcomes. Keep trying things. I am doing that, too. It is very important. Just came back from singing – so all is well for me. My eyes are a bit foggy and weird, but I hardly noticed them as much. So I’m very happy about that!

Your positive approach is an inspiration. I thought the dry eye group was a lifeline when I first found it. But I see how so many people have been struggling for so long and trying every possible way to deal with this horrible problem that won’t go away. I find that very discouraging. I have an appointment today with a dry eye specialist. I don’t expect a miracle now and only a few months ago I thought this would heal.

I think it is important to hear success stories to maintain hope. Attitude goes a long way toward healing. I like to think when something comes; it can leave the same way. I’ve had other conditions in my life that were probably stress-related (psoriasis, colitis) and they went away. It’s baby steps and you just keep trying things! Please let me know how your appointment goes.

You are right that success stories are good. Yesterday at my appointment, I had a Lipiflow treatment – it felt good while it was being done, but it was pricey. I was given a prescription for Restasis, and will try it. We are willing to try anything, aren’t we? I walked out of new doc’s office yesterday in tears. I’m still having had time accepting this happened to ME!! But why not me? I know that dark place. I keep going through the motions, but wonder if it is worthwhile if this never ends.

Thank you for updating me about your appointment. I remember so well going to my car to cry after doctor appointments. Why can’t doctors understand this kind of agony? It’s horrible and it does make us desperate.

I tried a new eye drop for a few weeks and it burned and didn’t help. (It was called Azasite, and it’s supposed to help Blepharitis symptoms). Then I used Cliradex wipes for the last few days (tree tea oil), which was another remedy the doctor thought would be worth trying. Today, my eyelids are burning so much and I’m in a lot of pain again. I hate trying things that make my eyes worse!

On my better days, the pain is manageable. I’ve accepted the fog and floaters. If I get depressed, then I am in more pain. I still hope there will be a cure for me someday. I pray you are feeling better and that something will get you to a better place. Hang in there – it will come.

I find it very depressing that life is passing me by. I am glad I didn’t develop this when I was much younger as some have. But feel it wouldn’t have happened if I hadn’t had the surgeries I did. You know how that is.

Today was one of my worst eye days in a long time. I am feeling very teary for someone with dry eyes. So I get to vent to you – it’s my turn.

All day long, my eyelids ached and I was in pain with foggy vision. I have so many things I want to do, but it’s hard to concentrate. I am fighting and struggling to overcome it.

You left such a supportive comment on the dry eye site yesterday; it was to comfort someone who was desperate. No one would have known you had such a bad day; you are so kind.

Every comment I make to help someone else, is something I tell myself when I am discouraged. That’s why I know about encouragement. I’ve lived with a lot of heartache and it sure helps when I see things as temporary.

I am having a hard time emotionally today as it is exactly six months since I was healthy!! February of 2015 was when I had cataract surgery that sent me down this path. If I had only had some inkling but as you said, it is better to accept it. But I am still bogged down hating it more times than not and it does make me depressed.

After 3 years of managing, I am sure you have been there and mostly risen above. I sure hope so. The one positive is I “met” you!!! 
Hope, hope, HOPE!

Hi Carol, we need to take care of ourselves with this eye condition. Your last line says it all. Let’s never lose our hope.

© 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.

#23 Judy and Carol

I feel like I have to keep trying things in order to discover something that might help.

I share my correspondence with my friend, Carol, from my on-line Dry Eye Support Group. Her words are in blue.

Losing a child must be the worst possible life event. You have had more than your share, yet your attitude seems so positive about facing challenges.

Finding strength when one feels so depleted and hopeless is very hard. Distractions probably do help as they get your mind focusing on something besides eye problem. This is still new to me: realizing it is chronic and won’t go away as I was originally led to believe.

I am happy to read yours don’t hurt as much as they once did. How long did that take? There are so many things to try yet so little seems to provide relief. Your mindset is a lot more positive than mine is now!! But your words and support do give some hope. Thanks, again, I really appreciate it









!

I’m still learning how to accept this condition. A wonderful woman also helped me when I was down.

I know you are just beginning this stuff. It’s one thing to try remedies with hope of relief, but for me, the hardest part was when those things made my eyes worse! I tried testosterone cream and it burned so much. I went on hormone replacement therapy that not only didn’t help, it made me even more miserable. The one thing I hoped would help were serum tears; they set me way back. I had a terrible reaction from Doxycycline, too.

But I feel like I have to keep trying things in order to discover something that might help.

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#22 Judy and Carol

I’ve tried so many things and plan to keep searching. It’s so discouraging when things set me back – it’s a risk I deal with since my eyes are so sensitive. But mindset makes the biggest difference!

In July of 2015, I started to correspond with Carol. She was a new friend from my on-line Dry Eye Support Group. Her words are in blue.

Judy, I really appreciate your blog! It has a lot of helpful information, as well as some hope. Thanks and best wishes.

Carol, you have no idea how much that means to me. I look forward to reading more about what you have gone through. It is definitely one of the toughest things I’ve ever dealt with and I’ve gone through some other tough stuff in my life.

Judy, your writings have helped me think I may make it through yet another bad day when there have been so many days I want to give up. This is such a tough situation to cope with and I am just beginning to realize I will NOT have life as I knew it back. Since you are three years out from the beginning it really does hold out some hope. But it will be a hard struggle. Thank you so much for sharing your story and experiences and I hope that you do very well!! You are so talented!!!

Thank you, Carol. I’ve come through losing a child and realizing that my life would never be the same after that. There’s nothing good about these life adjustments except to find the strength to get through them.

For me, dry eyes have left me very vulnerable and depressed. I’m a big believer that thoughts equal feelings. So I’ve worked hard to think in a positive way. First off, you are not alone. I never like the thought that “it could be worse.” But I have come to see that I am very blessed that I am able to still drive and do my work. My eyes blur, fog and hurt – but I’ve become much better at distracting myself from that.

My goal is to find joy in life despite this condition. My eyes are not like they were before my surgery, but like scars I carry – it doesn’t hurt as much as it once did.

Keep searching for your remedy. It’s there – never give up. I know that one woman in our group was in horrible pain and now is okay. She found a diet that helped her. Something that really helped me was to drink a lot of water. I also use Genteal gel when I go to sleep.

I’ve tried so many things and plan to keep searching. It’s so discouraging when things set me back – it’s a risk I deal with since my eyes are so sensitive.

But mindset makes the biggest difference!

© 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.

#21 MY FRIEND, CAROL

The saddest part of this disease is how isolating it can be.

My eyes weren’t great. I often looked at the dry eye support group as a place where other understood what I was going through. I didn’t have much to say.

But sometimes I felt compelled to write. There was a message from a new member named Carol. She mentioned that her dry eye problems happened after surgery; that was the same thing that had happened to me. I welcomed her into the group. (Her words are in blue)

July 6, 2015

My name is Carol and I’m so glad to find this site. I was diagnosed with dry eye after having eye surgery 5 months ago. I have been so miserable that my quality of life is gone. But reading others stories is helpful. It does seem like this has total control of my existence at this point. How do you cope???

This is a great site. My dry eyes also came on after eye surgery. It has been about three years now. It’s a journey! I am so sorry because that is the biggest struggle when it impacts our quality of life. I mourn the “normal eyes” I used to have. But at this point, my eyes have improved so I try to stay positive.

When I get sad about it – my eyes feel worse! Unfortunately, there is no remedy that works for everyone; it’s so individual. I was very discouraged when serum tears irritated my eyes; I had hoped they would be my cure!

I’ve written a lot about my dry eye journey. There’s probably a lot to sift through but here’s a link to my stories of coping. If it helps you, then I feel great! I haven’t written a recent update, but the good news is that it doesn’t look like I have glaucoma on top of dry eyes!



Thanks, Judy!!! Will review. Glad glaucoma not an issue – always hopeful.

Posted on July 7, 2015

Judy, just read some of your blog. Had to stop after awhile due to eye pain. You are amazing!!! Your story is just what I was looking for here: someone who has been thru the fire and survived! I’m still going thru grief stages and blame myself for having more surgery than I needed. You are very gifted
.

Things I loved doing: reading and going to movies. Next to impossible for now. Biggest sadness: unable to do things with my kids and grandkids. I feel so much guilt over burden I am for husband.

Posted on July 8, 2015

Thanks to Judy’s encouragement, I went to a movie all by myself today!!!!! Doesn’t sound like a big deal but it was.


Of course it was a big deal! You made my day, Carol. I’m so glad if I could make a difference. I believe it’s very important to try to distract ourselves from the pain rather than dwell on it. Nothing could be harder. The saddest part of this disease is how isolating it can be.

CRYSTAL TEAR filtered

© 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.

#20 SEARCHING FOR A REMEDY

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.

I never want to give up hope.

CRYSTAL TEAR 6 filter

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

#11 MY JOURNEY IN SIGHT

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

This was originally posted on May 8th, 2014:

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

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

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

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

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

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

I closed my eyes

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Dry eyes

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

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



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

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

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

What exactly have you been diagnosed with?

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

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

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

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

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

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

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

Painful eyes

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

To be continued . . .

Hopeless eyes

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

#10 MY JOURNEY IN SIGHT

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.

Eye regimen close up

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.
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)

Eye Regimen

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.

The artist's eye

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.”

The artist's eye 2

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!”

Filtered trees

She shared more about that workshop.

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

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

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

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

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

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

But now I had some hope.

And hope was everything for me.

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