# 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.

#42 Carol and Hope

I believe that searching for hope is an important part of healing. The more you look for something, the more likely you will find it.

On this blog, I have had many posts where I am corresponding with Carol. A year ago, we started writing to each other after connecting through an online dry eye support group.

Carol was very discouraged when her dry eye condition began. She related to me because both of us suffered from our dry eye condition following cataract surgery.

I believe this will be my last post with Carol on the title. It is such a beautiful conclusion because Carol has made peace with her condition and is not suffering with it the way she was in the beginning. Is she cured? I don’t think so since she still follows a regimen to help her eyes.

But what is most important to me is that she is able to live without her eyes constantly interfering and depressing her. She is actually doing very well!

My correspondence with Carol began to slowly fade and I hadn’t heard from her for a while. Then I saw her post something to someone searching for hope on our support group site. It was so touching!

Just as I had reached out to help her, now she was reassuring another member that healing was possible.

I believe that searching for hope is an important part of healing. The more you look for something, the more likely you will find it.

 Rose Red Left

Lili: Hello, everyone. I guess that if you are here it is because you deal with chronic pain from dry eye, but it would be very encouraging to have a success stories wall or something. For me, success would mean not feeling my eyes and being able to forget about them most of the time. I have MGD, so if you have a success story please feel free to share it here – or even if you have had some improvement over the time.

Carol: Compared to a year ago when I was always miserable, I’m 200% better. I used to be on support groups constantly and they really did help. Then I found a dry eye doc who really understood. She got me going on the right track – not perfect, but so much better. Find out what works for you. Know that it can get better. Best wishes!!

Lili: Carol, what is your regime?

Carol: It is a fraction of what I was doing a year ago when it seemed like I was doing something all day long for my eyes. I had Lipiflow a year ago July and that seems to have been a very good thing; I haven’t needed to do it again. I started Restasis and continue to use in both eyes in morning and only in right eye in evening. Hoping to eventually stop it as I did OTC drops, which I no longer use.

I use nighttime ointment only in right eye at bedtime if needed. Right eye is the one that gives me problems at times, but not nearly as bad as in the beginning. I do 7 minutes of warm moist compress in morning followed by lid massage. I think I could stop that, too. Entire routine doesn’t take more than 10 minutes or so. Life is almost as normal as it was before Dry Eye. Hope you find what works most for you. It is not the same treatment for everyone. Best wishes!!

Lili: Carol, that is music to my ears, this is what I’m talking about!!! Real people who get better! I’m so glad your life is back to normal. I could live with the “almost” normal.

Lori: Hey Carol, I have missed you but figured since you haven’t been around that you were doing better! I’m so glad to hear this. So you may be on of the .05 % that had benefit from Lipiflow! Fantastic! I’ve still held out trying since so many here have such negative reviews. Hope the rest of your summer goes great! So glad the quality of your life has improved. People need to hear that here!

Carol: Lori, you are right!! We do need to hear of hope. I wasn’t sure about Lipiflow either but my doctor is convinced that it helped me. You really don’t know until you try. I was in such misery last year and I was willing to do almost anything. My tear break up time is nearly normal and my eyelashes even grew back. Someone told me a long ago that people who improve don’t come to support groups. But glad this thread started so people know there is hope. At the time, improvement seemed impossible. Hope you are better!!!

Judy: Lili, I can vouch for how much Carol suffered. I remember when she first joined this group. We both connected because our problems began after cataract surgery. Carol, nothing makes me happier than to know you are in a better place with your eyes. Yay! Lili, I am also doing better. It can be such a struggle, but it’s important to stay hopeful and keep trying things. 🙂

Lori: I was trying to explain that to a few of the members here. Most people who have had success with dry eye treatments aren’t in these support groups. There are many people who have had success – it’s just that we are the worst of the worst – most conventional treatments have failed us here. I hate that that makes others feel so hopeless when they read all the negative reviews of these procedures here. So happy for you!

Lili: You are right! I get worse when I read that there are people struggling for decades, because I thought that most people suffer one or two years and then improve. It is so good to hear that are both doing well! Quality of life, that’s all I want 🙂

Judy: I always hope that by sharing I can help others. Lili, I found this so inspiring that I’ve shared your post on my dry eye blog.

© 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.

 

#39 Judy and Carol

I feel like that inspirational eye video I participated in came too soon. I know I was still inspirational, but it sure would be great if I had solved my chronic eye discomfort.

On Jul 15, 2016, Carol wrote:

Hi, Judy,

July half over!! Time flying!! Looking forward to cooler days, though, as heat has been bad. Your video shoot must be done by now. That was a very different thing to do.  

I’m still doing “less is more” with eyes; some days are better than others. I hope you are doing better too.

Take care, Carol

 

On Jul 15, 2016, Judy wrote:

Hi Carol,

It was so nice to hear from you this morning. It’s been awhile so I have a lot going on to share. The video shoot was definitely a great experience. It was so exciting that I was able to forget how much my eyes bothered me. I wonder if I truly conveyed the suffering this condition causes me.

Either way, if anything I said helps other people – then it was worth opening up my heart to share how I cope. And of course, am still coping! This past week was really hard for me because I had a terrible cold.

My eyes took a big hit and hurt me terribly. On top of that, I had another outbreak of hives. So I was itching and coughing all week. It’s been a long time since I’ve felt well. I also have been woken up in the mornings with awful leg cramps and heartburn.

I finally decided to try something new to help myself feel better. I made an appointment with a naturopathic doctor. It’s going to be this coming Wednesday. I had to fill out 9 pages for the intake. I know it will involve some radical changes – but I’m ready. When I tried paleo diet before, I was unsure of everything and gave up after a few months. This time I’m hoping I’ll get some guidance and that will make the difference.

Today I have more news. I decided to see a friend’s highly recommended optometrist. I know that optometrists can also treat dry eye, so I was hoping for some other new ideas.

This doctor was lovely and she explained so many things to me that made sense. She said my meibomium glands were pretty open, but my eyelids were severely irritated.

Right away, she felt it was an allergy.

I told her Claritin and allergy drops hadn’t helped. She felt allergy drops might have irritated my eyes with preservatives. I was impressed when she did some research and found some that were preservative-free. I ordered them on Amazon with a rush when I got home. I’m seeing her again in two weeks and will see if these drops help.

As far as my vision, she said I’d be a great candidate for scleral lenses. That could solve my vision and dry eye issues (hopefully!). It’s very expensive, but now I’m willing to try.

I feel like that inspirational eye video I participated in came too soon. I know I was still inspirational, but it sure would be great if I had solved my chronic eye discomfort.

I will continue to keep trying and trying! I’ll definitely let you know how it goes with the new naturopathic doctor next week.

In the meantime, hope you have a good weekend and aren’t boiling over there.

Judy

© 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.

#37 I STOPPED ASKING WHY

I was contacted by a documentary filmmaker. They want to use me on a segment for dry eyes, an inspirational story.

My eye pastel flipped

My blog title is a line of lyrics from my newest song “The Key.”

When I was in deep grief, acceptance seemed unreachable. Today, I sometimes feel that way with my eye condition. It’s hard to accept that my eyes bother me all the time.

What definitely brought me down in grief (and similarly with my eyes), is the question of why it happened to me.

Because there was no comforting answer when I was grieving the loss of my child, it was a question I eventually let go of. With my eye condition, I am trying to do that, too.

Lately, I’ve found it difficult to write for my blog; I didn’t want to write anything mundane. With all seriousness, I simply added pressure with the thought that I won’t write unless it’s something profound. All that led me to was a blank page.

I’m glad I’ve decided to write again without worrying whether it’s moving or not.

I made the decision this week, to participate in a video interview related to living with dry eyes. My condition is something that I’m acutely aware of every moment of my day. It has also partially contributed to my inability to write much here because I hate complaining about my eyes.

What’s so interesting is that I started this blog so I could write about dealing with my dry eyes. It was this blog that led me to this venture.

Before agreeing to this project, I first needed to find out if it was legitimate. It was, and I will be paid for my time and involvement.

I was asked to select someone close to join me during the filming. That way, I could engage with my friend about the challenges I’ve faced with my eyes. I chose my childhood friend, Joni.

Judy & Joni younger and older

The filming will happen in approximately two weeks and the crew is going to come to Kulak’s Woodshed where I perform every other Tuesday evening. I’m both nervous and excited.

To be honest, I was very uncomfortable thinking about my appearance and how my tiny apartment would look. I decided I am an ordinary middle-aged woman (to put it lightly), and that is fine since most of the people watching are not expecting me to be young and glamorous.

Also, early on when I was debating about doing this, a friend told me, “Oh, you can’t do it because you’re having such a hard time with it still.”

That is true. I do wish I could be in a better place with my eyes so that I could offer more hope to others. But on the other hand, I hardly think I am a spokesperson for dry eyes since I suffer far less than many other people with this awful disease.

I don’t know what my future is with this condition, but I’ve decided (a recent realization), that I’d rather focus on what I can do versus what I can’t.

In many ways, I am discouraged by how my eyes “hold me back.” I am reluctant to travel or socialize because of my discomfort. But I am also encouraged at how much I can still do despite living with the irritation and discomfort. The fact that my eye pain doesn’t show is both a blessing and a curse. I’m not really looking for sympathy, but since my pain is invisible to others – most people are completely unaware of my discomfort.

The completed video will be shown on a health-related website and I’ll share a link to it once it’s available. I’m glad that I’ve broken the barrier to start writing again!

Click this link to hear a conversation with my vocal coach, Hannah Anders, as I shared my concerns about doing the dry eye video.

Blog excerpt discussing dry eye video with Hannah, my vocal coach

In the transcription below, Hannah’s words are in blue.

I was contacted by a documentary filmmaker. They want to use me on a segment for dry eyes, an inspirational story. I said, “But I’m not cured.” I mean how can I inspire when I’m going through this and I’m still searching?

Because you’re going through it and still searching!

Yeah.

You know how many people throw in the towel and get ailed and cranky and bitter and awful because they’re ailed?

Or they kill themselves . . .

They kill themselves – absolutely. Chronic issues are really unbearable for a lot of the population and they do just kill themselves.

Well, I feel like it’s chronic at this point, but I don’t want to think that. I want to still think that one day I can get beyond it.

You’re going to get beyond it because we’re not limited by what’s in front of us as an answer.

The other side is – I live with it. And I just keep moving forward. I don’t know what my future holds. It doesn’t matter. I’m going to keep doing the things I love. I’m going to keep watching my children grow. I’m going to keep singing.

That’s why you’re inspiring in a video. Because you’re not cured yet!

But I’m not going to stop living – that’s it.

But many do – for them to come and follow you and for you to say, “I am always in search of the answer, but I have to live in this body right now – I have to live with these eyes right now. And, I’ve made the best of that!”

That’s right!

It’s one thing for somebody to say, “I’ve cured it! Look how inspirational I am!” Well no shit! You don’t feel anything. Of course, you’re inspirational – you’re happy as a clam. But you know you’re in the space of having to just hunker down with this thing and live with it!

Thank you. Maybe that’s why I can be a good songwriter because I can tell the story of how to heal myself and I’m still going through it!

Absolutely, so – I think you should do it. I think that would be great. And I think that there’s an answer. I think it’s going to lie in the functional side of your body and it’s going to lie in the trauma and I think it’s going to lie in getting whatever that is, back in balance. Our bodies want to heal!

© 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.

#36 FEATHERS IN MY EYES

I currently live with eye discomfort I could describe as “feathers in my eyes.” That is definitely an improvement over when my condition began.

My eye

Living with my dry eye condition is hard to really describe. Like the ocean, it ebbs and flows. Like the moon, it waxes and wanes.

Metaphors, metaphors – somehow they help me explain what is unexplainable. And that has led me to describe the discomfort that I currently live with as “feathers in my eyes.” That is definitely an improvement over when my condition began. I’m not describing a spider stinging me anymore, which is up there on my blog header.

When I am having a better day, the feathers in my eyes brush lightly. They aren’t really painful, but they are definitely distracting and annoying.

And it’s even possible to have a day that is “decent” and also “terrible.” My eye condition can change abruptly for the worse. One moment, the feathers become harsh and painful. My eyes are burning and foggy and the discomfort doesn’t even stop when my eyes are closed.

When I’m outdoors and with people, if I’m having a tough day with my eyes I will cry easily. I feel depressed about life in general. If I am at home, I feel safer. If my eyes are hurting I will simply go to sleep.

Since I developed my dry eyes in 2012 after cataract surgery, I’ve gained a lot of weight. Eating takes away some of my pain, and unfortunately that has left me with the pain of being overweight, in addition to my eye pain.

When my eyes are hurting, there hasn’t been any remedy that has taken away my pain significantly. I thought that a steroid eye drop was the answer, but now it has dawned on me. What stopped my pain wasn’t the eye drop. It was when I stopped doing all the remedies: the eyelid wipes, the artificial tears and the hot compresses. It was a coincidence that I used the steroid eye drop at that time. So less is more continues for me.

I saw my dry eye doctor last week. She seemed detached and frustrated for me at the same time. I would have liked more compassion. She had no ideas to help me and reminded me that I was the only patient that didn’t benefit from the Thermoflo treatment. I did know that wasn’t true because the nurse said that there was someone else.

Two years ago, she was willing to try anything I asked for and I could write a long list of all the medications she has prescribed for me. But now, it seemed like there wasn’t anything left for me to try.

The greater truth was that I didn’t want to try anything because my eyes are so sensitive. Last month, I did try a new allergy drop. Within a few minutes, my eyes were foggy and irritated. All of the allergy tests I was given at that appointment came back negative, so for now the “allergy road” isn’t one I will continue to go down for answers.

Of course, I haven’t given up. I have a few other ideas of things I want to try and plan to share them on this blog. But I’m resting now to gather my emotional strength again to reach that place.

One thing I have realized, is that the depression over my eyes is something I am so tired of wrestling with. There was a day last week – ironically it was the day when I saw my eye doctor. As I waited to see her, my eyes were filled with painful feathers. I thought I had an infection from rubbing my eyes, because the burning was so intense.

I left that appointment in tears – filled with confusion. My doctor told me everything looked fine and had no ideas to help me. I was glad nothing was wrong, but still I was on my own with this pain.

Later that day after resting, I decided to push myself to go out for the evening. I noticed my eyes were not painful and I was able to ignore the feathers. I was proud of myself and was amazed how I had the ability to rise beyond my eye condition.

The realization from this was that when I focused on my pain – it threw me completely down. The ability to focus on other things that were good in my life helped me tremendously.

Letting go of the pain is something I’m always working on. The fight subsides when I look away from it, and instead look at better parts of my life that I am grateful for despite this condition.

My eye pastel flipped

© 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.

#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.

 

#25 DON’T GIVE UP!

Don’t give up! Find your motivation to search for something that will help you.

Nothing has made me sadder on my support group site than hearing about suffering from young people. I am thankful that I had so many years of freedom from chronic irritation and pain that currently rules my life.

A young girl in her early 20’s from the Netherlands (I’ll call her “H”) wrote these posts on the support group site:

H: How can you cope with the psychological results of horrible dry eyes? Even though my eyes don’t itch or burn terribly, I can’t focus on anything. I never feel myself, or ever good and healthy. I did some depression tests they all turned out that I might have severe depression and I must consult for help. I can’t use an antidepressant because of their side effects. I always think about my problems and get ill and shout at my family members because of fatigue and the mess in my head. I am emotionally destroyed. I live with my family, but they don’t support me. They even don’t understand me. I feel lonely, too.

This young girl’s post struck a chord with many of the other support group members. Many people offered support and suggestions.

L: Very sorry. Nobody gets it. I just want to crawl into bed. But mindfulness does help. We will find answers.

Judy: It is a tragedy that you are so young and suffering. This dry eye disease simply sucks! I’m so sorry! When this all started, I wished that a doctor would “rescue” me. How disappointed I was. Instead, I realized that I must rescue myself. Mindfulness is a perfect word.

‪L: I learned the 4 ” A’s”: ACKNOWLEDGE that the dry eye is a painful issue and very real. ALLOW that it isn’t great, that I am not pleased with it and it pretty much sucks…ACCEPT that I was dealt this hand in life…and ADAPT!!

How can I be as proactive as possible to make the best possible outcome from this…that I cannot wear makeup any more ( and was a make-up artist!?)…that maybe I have to find another source of income…that I can just ” be” with the sensation and not ” snowball” or catastrophize what WILL happen…a new ” normal”…and that through meditation I can control my pain levels. It took a long time…but there is a type of peace.

Unfortunately, too many doctors are simply ignorant of this very disabling and complex disease. Adapting is key.

Judy: “L,” I love what you wrote. That is so true – it actually applies to grief and this condition has been a grief process for me. I lost a child many years ago, so I know what it means to struggle for acceptance and adaptation. Here are some other “A” words that came into my mind. ALONE – Dry eyes have isolated me and this group keeps me from feeling alone with it. AGONY – the feeling that I can’t take it any longer and discouragement about living this way. ASTRONOMICAL – what this condition can cost over time. But your 4 “A’s” are a beautiful and upbeat way to turn it around.

I wish I could help you more, “H.” I know you suffer greatly, as many people on the site do. It is a horrible condition to live with.

H: Yes, it is horrible. I am so depressed now. Nothing or no one can help me.

Judy:  It seems like everyone has to find their own personal remedy to help their eyes. Two things that have helped me with depression and my eyes are: taking a walk, swimming and music. Don’t give up! Find your motivation to search for something that will help you. It is resting at the moment because it is very hard to fight all the time. But I know you will get it back. And when you do, you will find relief somehow somewhere. 

It’s that way for all of us.

© 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.

#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.