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.
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.
A setback won’t put me back where I started, although sometimes it feels that way.
The nurse administering my treatment was a kind and caring woman. She had me lie down. As she started the machine, she put on soft meditation music and I told her it was lovely. She replied, “Oh, thank you! I searched it up and decided to put it on whenever I do these treatments – it helps to relax me, too!”
Today there would be no Beta-dyne brushed on first to irritate my eyes. I closed my eyes as she squeezed out a cool gel over them. The machine began to hum. I could have been in a dentist’s chair, but instead I was having my eyelids brushed.
She said, “After four minutes I am going to press harder. It shouldn’t hurt – but I am trying to express the oils thoroughly that way.”
I asked her if she would see the oil being released. She explained that it showed up as a cloudy yellowish color. The clear gel changed as the oil mixed into it. At the end she actually showed it to me and I took a picture.
She told me that she had time to research some of my questions. One of them was how this differed from Lipoflow. She said that Lipiflow was more invasive; that it required anesthetizing the eye and having a barrier lens put on as protection during the treatment. I didn’t know that.
My HMO did not yet commit to buy this $23,000 machine. I was one of 14 test subjects. Other than me, only one other person did not report relief after treatment. But I was hopeful that this second treatment would be different without using the Beta-dyne that possibly irritated my eyes the last time.
In two weeks, I had a third treatment scheduled. It would follow a visit with my dry eye doctor.
For 30 minutes the nurse chatted while she massaged my eyelids. When she applied more pressure, it didn’t hurt – but it wasn’t that pleasant. Finally, she was done. I sat up slowly and opened my eyes.
Her stories of people gasping with clearer vision didn’t uplift me. I blinked and the residual gel made my eyes blurry. I knew it took time for that to clear.
I thanked that sweet nurse with a hug and promised I’d let her know later in the day how my eyes felt.
The afternoon wore on and I didn’t feel anything remarkable. In fact, my eyes felt slightly sore. I tried to push that thought aside. By evening there was no doubt; my eyes were terribly irritated.
The feeling was familiar – discouragement and spiraling depression. A remedy offered hope and relief. A failed remedy set me way back. The fallout of pain left me thinking that there was little else left to try.
Why couldn’t I have been one of those lucky patients who found relief?
That question was one I didn’t want to ask. But it kept shouting in my head.
I promised the nurse I would let her know how I was doing. I typed out a message and she sent me a reply to follow.
A setback won’t put me back where I started, although sometimes it feels that way.
Even though I feel knocked down, I’m not going to give up my hope. I’ve already traveled farther away from the pain of when this awful condition began. A setback won’t put me back where I started, although sometimes it feels that way.
The whole experience was filled with hope. I needed hope badly and couldn’t believe the timing.
Everything was harder when my eyes were bothering me. I was having one of those mornings where I felt so down. I wanted to be productive, but it was impossible because I couldn’t really open my eyes.
I was still scratching a few scabby hives and decided to use the steroid drop because I desperately wanted my eyes to feel better. I wasn’t really sure that those eye drops had caused my itching problem.
When my phone rang, I was surprised – it was a nurse who worked with my dry eye doctor. I had forgotten that at my last appointment, my doctor mentioned a trial study with a new machine. It was non invasive and free. I told her I was definitely interested.
The nurse explained that the test procedure involved three treatments over a period of one month. She wondered if I was available that day or the next. I couldn’t believe it; it was the perfect thing for me to do on a day where I felt miserable. I told her I was more than ready. In only a few hours I might find some relief. There was nothing better than having hope again.
I hung up the phone and the first thing I wanted to do was share about it on my dry eye support group site. Within a few minutes, there were a dozen messages of encouragement. I was so touched and felt excited because perhaps this might help others once I shared about it.
I arrived promptly for my 11:30 a.m. appointment. The nurse ushered me in sweetly. I didn’t have to sign any papers or pay anything at all. I felt like a celebrity almost.
It was explained to me that I only needed to lie back and relax. My eyelids were going to be massaged with a tool that reached 108 degrees; the oil in my clogged meibomium glands would be softened and released. I closed my eyes; Beta-dyne was dabbed on first, followed by a thick gel. The machine looked like an electric toothbrush with space for my eyelashes.
The nurse explained that the Beta-dyne did bother some of the other prior patients. It was used to counter any bacteria that might be released from the glands.
She said there were 14 patients in the study. Only one person reported that the treatment did nothing while the others found great improvement with dry eyes and even their vision.
The whole experience was filled with hope. I needed hope badly and couldn’t believe the timing. I asked the nurse if it were possible for someone to take a picture. I explained that my dry eye support group was eager to hear about this.
The nurse was more than willing. She gave permission for lots of pictures and suggested I could even scan the brochure she had for me.
A timer went off after about 15 minutes. She switched to my other eye.
As she massaged my eyelids, she talked about many things related to dry eyes. I heard her mention the name of my cataract surgeon and felt myself flinch.
I was more than frustrated when I developed this condition after my surgery. I felt my surgeon was “done with me” and upset that he wasn’t more compassionate. But now, I heard that this surgeon suffered so much from Meibomium Gland Disease that he walked around the clinic with a microwaved potato wrapped in a paper towel over his eyes. That piece of information alone was very ironic for me.
It was time for me to sit up and blink. The room was blurry because of the gel. The nurse said that it would go away soon. She asked me how I felt. I didn’t know what to say – I wasn’t really sure. I wanted to say I felt fabulous, but it wasn’t the case. I felt a sting and mentioned it.
She said, “That’s probably from the Beta-dyne. Next time we don’t plan to use it. It bothered a lot of other patients but to be consistent in the study – I had to use it on you for the first treatment.”
For the rest of the day, I couldn’t believe how many wonderful comments were written on my dry eye post. I wrote back to everyone, but I had to be honest – I was a bit disappointed. My eyes were still bothering me.
However, I still had two more treatments – it was too soon to give up hope.
The next day, my eyes worsened. Now I had to consider that the treatment irritated them. It was very disappointing.
The nurse who performed the procedure sent me a message asking how I was doing. I was honest. She wrote back: “I am so sorry that you did not get relief. Thank you for not giving up. I hope that we have better luck at next week’s appointment.”
All of the messages from my support group helped me very much. I learned that another woman with dry eyes had an allergy problem with her eyelids similar to mine. She had discovered that her allergen was dust mites. I wondered if that could be my problem. It was definitely another avenue to investigate.
One member told me that she was pulling for me and wanted a link to this blog. My dry eye blog was simply a place where I could vent about my eye problems. It was therapy for me to freely share and complain.
Later on she wrote this to me:
“Judy, I just read most of this at work! It’s beautiful! My eyes definitely got tears at times. I’m going to go light a candle for you tonight.”
If she only knew how many tears her words brought me.
I think laughter is so healing and big help in dealing with chronic pain.
This post is taken from my Facebook Dry Eye Support Group. I am sharing something that actually carries a little bit of humor.
LORI: Seriously? I have a drop for every occasion!
SUSAN: Nice stash! I know. I have about six different ones myself, including the ones that didn’t work!
LORI: My hubby says my bathroom looks like an isle at Walmart!
JOYCE: Did you break into my house?
CAROL: Looks like my closet. Plus some.
MARGARET: I have a few too. But mostly stick with two.
JUDY: Oh, drop it! I sensed your post was “dripping” with sarcasm. I sure wish I had something more “refreshing” to add! (I love puns!)
LORI: You’re awesome Judy!
JUDY: Aw! It’s nice to know my puns are appreciated. My puns appear in the “blink of an eye!” But I just can’t “Systane” them!
LORI: I actually have eye drops on my shopping list today and my husband says ARE YOU SERIOUS? Lol. I think I need a 12-step program.
CAROL: There’s probably a 12 Step Drop lol!!
KOSTA: The first step to beating addiction is admitting you have a problem.
JUDY: I think it’s the other way around. We already know we have a problem and the “addiction” is really just a desperate coping measure!
KOSTA: Judy, you’re right.
LORI: I put drops in when I’m alone. I hide the amount of times I put drops in from my friends/family. I lie about the $$$$$$$$$$ I spend on my drops to my husband. I sneak around to different stores when I find a sale on drops but I don’t have a problem though. I could stop if I wanted to . . .
DONNA: This whole post is cracking me up!!! My dear friends, I needed a laugh!!!!
JUDY: Me, too. I think laughter is so healing and big help in dealing with chronic pain.
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.
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.
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.
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.
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 was determined to overcome my eye condition. Planning a trip seemed like a way to prove to myself that I was still able to enjoy life. I decided to go to Oregon; it would be an opportunity for me to meet the wonderful art directors I worked with. For the last three years I had received many terrific assignments from the Tillamook Cheese Company and their art agencies were located in Portland.
My 18-year-old son asked if he could join me and it sounded like a great idea. My post title is the first line from my song “You Are My Wings.” I recently sang a vocal for the new arrangement of that song, so those words came into my mind. Yes, I was glad I wasn’t flying alone!
Our flight left late at night. My son took the window seat and was excitedly snapping pictures after take off. Both of us agreed the city looked like glitter below us.
As I continue this post, I am going to intersperse comments from people from a dry eye support group I belong to on Facebook. Their words will be in different colors and represent many different people. My own words to the forum will be in black bold. The post began with one member voicing her worries about taking a trip with dry eye disease.
Since I don’t know anyone personally who has dry eye like I do, I’ll cry to you guys about it! I’m going on a trip with friends later this month. Normally it would be a fun trip and I’d be excited about it, but now that I have this dry eye thing I’m dreading it. This condition, which sounds like a mild inconvenience to people who don’t have it, is really having a big negative impact on my life. I know there are much worse things. I guess this is how it’s going to be from now on and I’ll have to adjust, but right now I’m still shocked at how debilitating it can be!!
I completely understand. I’ve felt reluctant to take any trips away from home because of my dry eye condition. I like to “feel safe” and be home when the pain overwhelms me. It is one of the sadder realizations I’ve come to by having this horrible condition.
Our flight would arrive in Portland near midnight. My eyes were constantly bothering me in the airport; once my son and I were on the plane I closed them. My son was so excited and I was very happy he was with me.
I decided to listen to my music for a little while, but then I became very emotional and tears spilled from my eyes. It was embarrassing and I wasn’t sure if I was crying from joy or sadness. But I did notice that my eyes felt better after releasing those tears.
It’s a stunner, isn’t it? People have no conception of the life impact unless they’ve experienced it. The adjustment process is not easy but you will get there! Sometimes the mental challenge is as big as the physical one… that gradual shift from feeling defeated and limited to grappling and taking control, embracing the tools and strategies to make it through.
Your words echo mine exactly…the part about others not getting it really rings true.
The worst part is other people’s complete lack of understanding! If someone asks what’s wrong and I answer that I have dry eyes, they look at me like I’m stupid and say, “Why don’t you just put drops in?” I SO feel your pain !
Our plane landed and my eyes hurt; I poured eye drops into them, hoping they would calm down. The fogginess and irritation were driving me crazy. I followed my son through the airport and prepared myself to drive a rental car.
During the plane ride, I kept digging through my purse, hoping I’d find an important piece of paper. It contained the gate code and room number where we would be staying.
Before we boarded the plane, I called my older son. He looked in my desk drawer and didn’t find it there either. I wondered how it had disappeared.
My youngest son squeezed my hand and said, “Mom, stop worrying about finding that paper. We’ll figure out a way in. Why don’t you just look at this as an adventure?”
With those words, I grinned. My son probably learned that from me!
I had an airport TSA guy question me as to why I had so many eye drops. After all, I was “just going to New York.” I fear running out of drops in the middle of a trip, so I carry a lot. But other than being prepared, don’t let it change your life too much. The people close to me understand now that I am capable of conversations with my eyes closed. Keep getting out there and enjoying life.
That’s why I love this group, full of people that understand exactly how crappy this condition is.
You must know that there are others like me who share your pain, I seldom go anywhere and don’t want to think about traveling for vacation.
We safely reached our hotel and I was collapsed in bed. I was amazed that everything had gone smoothly. My son was right; it was an adventure.
I also realized that taking this trip with my son was joyful and that was the reason I had cried earlier.
I completely understand what you are going through. After dealing with eye problems for a year I finally went to the doctor; Severe Chronic Dry Eye was the diagnosis. So far, I haven’t found much relief, but being in this group has helped. You don’t really understand what it is until you have it, and then you can sympathize with anyone else who has it.
It might take a long time to feel better but it will happen. Don’t get frustrated. I know we have all thought that we’ll feel like this forever but things do change. And lately there have been a handful of new drugs in clinical trials that will hopefully be put on the market.
I used to not go anywhere, but then I started to face my fears about socializing with others. I think it’s because you never know how your eyes will behave and stress doesn’t help. Usually, I just say to myself nobody’s perfect. I just tell people straight out that I have eye problems. It has taken me ages to get to this point and I have a lot of anxiety.
I understand completely. This condition has completely changed my life. I’ve had to quit my job. I am doing some volunteer work now, but some days I feel so lost and alone. I miss the capable person I used to be.
Just get out; don’t let it stop you – don’t let it win. I am doing my best to travel and enjoying life with my husband at my side to hold my hand when I have to close my eyes because of the pain.
I’ve struggled a lot with the horrible dry eye cycle of sinking into hopeless depression – and having my eyes feel even worse when I’ve been discouraged. But I can say with complete honesty that I have good days where I accept this condition when it’s not torturing me. I miss the feeling of “normal” and probably always will. I guess this is the “new normal” and I’m grateful when it’s not like it was at the beginning! I cannot let go of hope and will continue to search for anything that brings relief.
Even though I couldn’t escape from my foggy vision or eye pain, I thoroughly enjoyed exploring Portland, Oregon. I especially loved taking pictures at a beautiful Japanese garden. The koi were magnificent.
On every outing my son kept asking me, “Mom, how are your eyes?” I appreciated his caring but felt sad because I knew he was constantly worrying about me.
I think what’s hardest is not being able to depend on your eyes. I am a visual person. The discomfort of the dry eyes changed my life so drastically. I used to be a fairly social person. Now I feel like a hermit. It takes such an effort to get myself out the door many days. I feel so lonely. And it seems that my friends and family have moved on without me. I’m so grateful for this support group. It keeps me going.
Your words made me cry – so true. I am also very isolated and get sad when I see pictures of myself with bright open eyes. I can see my eye pain in pictures now. But other people don’t really see or understand that pain. My eyes are foggy and uncomfortable – but I’m not impaired like other people are with this disease because I can drive and work. Still, the isolation comes from not feeling great about being out and about – traveling, going shopping etc. When my eyes hurt, all I want to do is retreat.
My son and I explored different beaches. He especially enjoyed a tour of the Yaquina Head lighthouse. Before heading back to Portland, we drove to Tillamook Cheese Factory. We were given royal treatment there and it was a most wonderful day.
We all know this disease is horrible to the point that quality of life is adversely affected, even the ability to work. But worst of all, is the chronic pain, aching, stinging, burning that no one can understand. And the depression and anxiety that ensues because of the isolation and wearing down from constant pain.
Your stories have made me speechless. This is my life as well. I have to pick and choose why I leave the house because I know it could very likely trigger a flare up. It has greatly impacted my income and social life but, most of all, the uncertainty of the next “flare up” and the isolation has caused me anxiety and depression. It’s priceless to connect with others who understand this.
I think you summed it. Our eye issues cause detachment from life – and I miss the connections I once had. But ironically, I have learned so much from this condition about myself. I use this word a lot – insight. I’ve searched deep within to discover empathy and focus on small blessing to keep myself going. This is a precious connection for me to know that others understand the pain that is such a burden dealing with every moment of my day!
After touring the Tillamook Cheese Factory, I drove back to Portland through the Tillamook Forest. It was raining and my eyes were very concentrated on the road. After four hours we found a hotel near the airport that worked out well for us.
On the following day I planned to visit two different art agencies that I worked with on the Tillamook account. My son told me to go on my own because he wanted to relax in the hotel all day. I was slightly disappointed at first. But I didn’t say anything; the last thing I wanted to do was drag him along.
Being alone made me anxious because the streets of Portland were very complicated. It was going to rain and even though I had GPS, with my eye condition it was tough. But then I realized that I wouldn’t have my son barking commands at me. I could even sing in the car if I wanted to.
I took a deep breath and left myself plenty of time to get there. Everything worked out fine; I found the two agencies and even managed to stay dry somehow!
We went home the next day and I was proud that I had been able to travel despite my eye condition. The day after my return, I had an appointment with a top eye specialist and was hopeful that he might be able to help me.
It has been very hard living this way. I have definitely lowered my expectations about being “joyful.” I only want to live my life without constant pain.
During this trip, I ate far too much. I knew it was to numb myself and that it was not good for me. My awareness of that made it even worse.
But celebrating my courage is important to me. I continue to hold onto hope even though sometimes it feels like I’m losing my grip.
Seeing the beautiful pictures brings my smile back. And of course, knowing that my son will always have wonderful memories of our time together is the best part of all.
I kept looking for something that might help my dry eyes. I decided to try an acupuncturist who came highly recommended by a good friend.
Originally posted on March 15th, 2015:
I was so touched when a good friend sent me an email wondering if I was okay because I hadn’t posted to my blog for almost a month. I was teary as I typed her a message back:
It’s so sweet of you to think of me. I’m very, very touched. Perhaps when I had deep stresses like my parents’ deaths and my divorce – it helped to express my sadness through writing.
But lately I’ve been quite depressed. I’m wrestling with the dark witch and trying to figure out what to do next. I feel like I can’t allow myself to be sad since I am free now and have so many blessings in my life.
It’s because of my eye problem.
I continue to do music, which definitely comforts me but most of the time I’m struggling with pain in my eyes. I am irritable and distracted by pain, so upset that I can’t seem to overcome this. I feel like my journey was about rediscovering joy and I feel like it’s hard to share my honest feelings.
Love you, my dear friend. I think of you often.
On the last part of this series, I was very hopeful about improvement in my condition because of drinking a lot of water and using eye gel at night.
I decided to give serum tears a third try. I had a batch in my freezer and this time I would do something different. My friend, Judi was a leader of a dry eye support group and told me there was another method I could try where the serum tears wouldn’t be as irritating.
She said, “There’s a doctor who recommends using a steroid eye drop for a week before using the serum. The steroid calms down your eye and without inflammation, the serum can have a healing effect.”
I had my doctor look into this and she was willing to prescribe a steroid eye drop for me. Unfortunately, after one day my eyes began feeling foggy and painful. It felt like I was putting poison in my eyes – so I stopped.
I was disappointed, but not like I was the first time because I didn’t have high expectations.
Unfortunately, it took weeks before my eyes felt better and that was very tough.
I try hard not to be affected by my struggles with eye pain. I want to keep looking for something that might help me. I decided to try an acupuncturist who was highly recommended by a good friend – at least that wouldn’t set me back like the steroid eye drops did.
Her name was Veronica and she came to my house. I enjoyed talking with her as she worked on me. I asked her to take pictures and she did.
After our first session, I went for a walk and marveled – it felt like my vision was clearer and I could open my eyes wider than usual. I was thrilled and planned to write about it. But then I caught a cold from my son and my eyes worsened. But I still was very hopeful that my eyes were improving.
Veronica came for our second and third session with determination to help me. At our first appointment, she recommended that I try at least four sessions to give her a chance to make a difference. Each time she tried out different things and asked other instructors at the acupuncture institute where she worked for advice.
After our fourth session, my eyes were still very irritated. I was beginning to lose hope and didn’t know what to do next.
Last week, a good friend sent me a text message encouraging me to see an eye specialist. I have had many people recommending ophthalmologists to me. I don’t think they realize how daunting it is to see a specialist without insurance. I have an HMO and can only use their doctors; they have continually denied my requests for opinions outside of their network.
My friend was persistent. She wrote me a second time:
If you read this doctor’s list of achievements, he appears to be an excellent scientist and diagnostician.
I thanked her. I reminded her that a year ago, I spent a lot of money to go to a well-known eye specialist who spent 10 minutes with me. He told me two things:
There was nothing that I should ever do to my eyes again (surgically).
When I mentioned my dry eye pain he said, “Oh, I don’t treat dry eyes – you need to see another specialist for that.”
This feels daunting, at times – hopeless and expensive. I understand your wariness. Those of us who have tested the medical world know that true Health Care does not come easily. Keep the faith! The alternative is unthinkable!
I’d gladly spend money for relief but it’s all unknown. But I value your recommendation and promise to look into it. I’ve dealt with the unthinkable more times than I ever wanted to, sadly.
If you see this doctor, be candid about your plight. Besides compassion, you might raise his scientific curiosity. You must carry the same tenacious torch for YOU, as you’ve carried for your kids!! Sorry for being so forceful. This all hits a passionate chord with me.
I love your chord. I’m blessed to have a friend like you. I’m crying.
I wrote down the doctor’s number and it was next to my computer. My eyes were just awful and I began to think that perhaps I might consider this. But first, I had to overcome defensive and negative thoughts. Did my friend think I wasn’t taking care of myself? Was I not tenacious with this problem that had tortured me for three years now?
I understood why I felt angry. Why would I trust any doctor? The very doctors that I trusted had literally dumped me with my eye problems. And I could go back further to the surgeon that operated on my son, who subsequently died. At the moment, I had a cornea doctor who was willing to prescribe the remedies I researched and requested, but so far nothing had helped me.
That was a lot better than the first specialist who told me, “Your eye condition is considered a disease. There’s nothing else I can do.”
Then I thought about the fact that my friend was so caring. How could I be angry with her for that? I went ahead and called the clinic and never even looked up this doctor on the Internet. But I made sure to ask if he treated dry eyes. The woman on the phone put me on hold and came back to say, “Yes.”
I scheduled an appointment; it was two weeks away and I had ten pages of forms to fill out.
I shared my plan with my friends. I was surprised when I received a message from my good friend, Dr. Sam telling me he knew this doctor. He wrote:
He is brilliant. I’ve worked closely with him at Los Angeles County Medical Association…he is a former President like me…I can recommend him highly!…Sam
I want to add some perspective to my feelings about hope so I’m sharing correspondence from the wonderful dry eye support group that I belong to on Facebook. These exchanges happened several months ago. My words are in black/bold.
A woman named Mary posted:
My eye pain was horrible today at work. I could hardly open my eyes. I can’t cope anymore – I want to rip my eyes out.
Mary, I wish I could hold a crystal ball for you and tell you this is temporary. I know you are in Hell. Please hang in there because one day you will be so glad you did. You will heal. It takes patience and a lot of self-love. Dig deep because you are worthy and have a lot to offer this world. Don’t let this disease win.
Thank you, Judy. Now for the past three days, I’m feeling better. I am unable to figure out why. I don’t see any pattern, any change in my routine . . . This is really frustrating!
Mary, I suggest trying to focus more on gratitude and appreciation rather than frustration.
Mary, that’s wonderful news! So much of how I’m feeling surrounds the way I talk to myself. Enjoying it is great. My motto is – the more you look for something, the more chance you’re going to find it. That’s how I feel about my eyes. I keep looking when they hurt and know better days are always possible. That’s why I told you not think about ending your life – TEMPORARY is something I tell myself a lot when I’m discouraged!
Oh, and I also see you as very grateful. When I’m told to “feel grateful” that hurts. I know you are!
Thank you, Judy, because I was hurt to be honest.
I get so sick of dealing with this day after day after day!! I just want to be a normal person with everyday problems.
Unfortunately, eye pain is impossible to overlook. I can push many types of pain aside, but when it’s in the sensitive part of my eyes – there’s no escape. I can say that my eyes have improved to a point where I can think about other things now. I cry tears of gratefulness for that but it’s far from what used to be normal for me. I pray it gets easier for you.
Went to the emergency room. I don’t have an infection. The doc told me he couldn’t do anything for my eye pain. I just want to end my life.
Mary, please don’t let this disease cause you to hurt yourself. Your life is very valuable. Pain can make us crazy, for sure. I’m a bereaved mom and I know if you ended your life – there would be a lot of pain for those who love you. It will get better. I promise.
Judy, your message is so kind – I’m crying right now. Thank you. It is a relief to talk with people who understand what I am going through, thank you so much!
Tears are good, Mary. You are not alone with your pain. You will find relief and until then – please do not despair. It is in this valley of sorrow where you will discover things that you will carry for the rest of your life. It is an opportunity to let go of what we expect from life. I think this is a turning point for you. It’s okay to express your anguish. You are going to beat this. I know you will.