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.
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.
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.
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.
The day after I returned from my vacation, I had an appointment with a top eye specialist.
Originally posted on April 11th, 2015:
Two weeks ago, I visited the state of Oregon. While driving along the beautiful coast, my son and I stopped at Yaquina Head Park and toured a remarkable lighthouse.
At the end of an educational lecture, we were able to climb a tight stairway inside that led to the top of the lighthouse. On our way down, my son stopped to take a picture of the spiral staircase. I thought his picture eerily resembled an eyeball! (You can see his shoes at the top.)
The day after I returned from my vacation, I had an appointment with a top eye specialist. Before seeing the doctor, I was given a few tests. A technician manually checked my field of vision; it was tiring for me to concentrate and look for tiny flashing lights. Afterwards, she drew pictures from her results to map my “blind spots.”
My appointment did not yield any new information to treat my dry eyes, unfortunately.
The specialist recommended that I try plugs in my tear ducts again. Plugs never helped, and I still had two that were inserted years ago.
This ophthalmologist then told me that my dry eyes were a result of poor tear film. I asked him if I also had Blepharitis (eyelid irritation), and he said that was secondary, a result of not having enough lubrication.
My first big surprise was to find out that I needed new glasses! I was never informed after cataract surgery that my vision could change again three years later.
At first, I was embarrassed to think that perhaps some of my fogginess was because my glasses needed to be changed. But I paid a lot of money for this appointment, so I was glad that I was given such a thorough eye exam.
But I wasn’t expecting to hear the more shocking news that followed.
He told me that the pressure in my right eye was very high and there were visible indications of glaucoma damage. He gently told me to get an appointment at my HMO with a glaucoma specialist – not just a regular ophthalmologist. And he told me not to wait.
I left his office and sat in my car crying. I waited until I felt well enough to drive. When I came home, I crawled into bed. I was devastated.
I didn’t really want to share my upsetting news with anyone, but then I received a call from my friend who had recommended this specialist.
I told her tearfully, “You know, you probably saved my vision – I don’t know how to thank you!”
My friend was very comforting. She acknowledged that I’ve had a lot of challenges to go through since my divorce and my parents’ deaths. I was very grateful for her.
It was almost 4:00 pm and I decided to call my HMO to schedule an appointment. The sooner I got that appointment, the better. It was a Friday afternoon before Easter weekend, so I didn’t expect much.
The lady on the phone said, “There aren’t any ophthalmologists working next week; they are all gone for Spring break.” I thought she was kidding when she said Pediatrics would be covering that department.
I told her I was very concerned about my eye pressure and wanted an appointment with a Glaucoma specialist. She said, “You will not be allowed to see a Glaucoma specialist. Only patients who are not responding to conventional treatments are allowed to see one. Any of our eye doctors can treat you.”
I said, “Well, what if this gets worse before I see a doctor? I don’t want to have my eyes permanently damaged!”
Then she asked me, “Are you in pain?”
I answered, “I’m always in pain. I have dry eyes.”
Her reply was laughable. She retorted, “Well, honey, just put in artificial tears until your appointment.”
I took a deep breath. There wasn’t enough fire in me for steam to come out of my ears when I heard that one.
But sometimes, God can appear in moments that seem like coincidences.
Suddenly she said, “Oh! I see that there is an appointment available and it’s only in a week and a half. It just so happens that it is with our only Glaucoma specialist – so you are very lucky.”
I marked down the appointment for April 16th.
My eyes were still dilated and the light outside was painful even with my dark glasses on.
I was overwhelmed trying to grasp the things the eye specialist told me. My head was spinning with a zillion questions: Did he say I had Glaucoma for sure? Was the damage he saw permanent? If my next appointment was in 13 days, could my eyes get worse? Was I was going blind? How would I adapt and manage that?
I was spiraling down into depression. It was too much!
Two weeks later, I saw a glaucoma specialist. She ordered a battery of tests and then sent me a message. She completely disagreed with the first doctor and said she saw no evidence of glaucoma. Her recommendation was that I come back in a year to have my eye pressure checked.
I let the outside specialist know what my HMO eye doctor said.
He responded with this, “I am pleased your pressure was lower and symmetric on that day. Often there is a delay in diagnosis and treatment of glaucoma due to fluctuations in pressure, just as hypertension may not be diagnosed on a day when the blood pressure is normal. I would recommend that you be evaluated at least every 4 months, not just with pressure checks, but also with quantitative perimetry and ocular coherence tomography for measurement of retinal nerve fiber layer thickness. Ultimately, if you do have glaucoma, one will see a progressive deterioration in those studies.”
I advocated for myself and made sure that my HMO would follow this outside specialist’s recommendation by thoroughly checking my optic nerve in 4 months. As I result, I have an appointment scheduled in July.
I love puns, so I’ll start with one here.
All of this was a real “eye opener.” I was so down when I went to see the outside specialist. I wasn’t expecting worse news about my eyes and couldn’t handle hearing I had another eye disease.
But then I realized that worry and anxiety didn’t serve me in any way.
One benefit from that appointment was that I had new glasses, which helped me see more clearly. As a result, I felt a lot better.
I went from total panic, to complete gratefulness. I was able to do so many things with my eyes. I relied on to drive, illustrate, play tennis and edit music.
I decided I could accept my eye pain and somehow find a way to live with it.
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.
When I began to write with more detail about my eye issues, I grouped those stories under the title of “My Journey in Sight.” I was hoping that perhaps through my experience I could help other people suffering with similar problems.
This was originally posted on November 7th, 2014:
Over the past two years, I’ve struggled with some major eye problems. Most of my energy was spent trying to cope with pain and at the same time search for anything that might help me.
When I began to write with more detail about my eye issues, I grouped those stories under the title of “My Journey in Sight.” I was hoping that perhaps through my experience I could help other people suffering with similar problems.
I found that title so ironic because my blog “My Journeys Insight” began as a blog of self-discovery and had nothing to do with eyesight. But my eye problems have brought me insight and the additional pun just enhances my blog title.
I’m hoping this will be the last part of my “eyesight series” for a while. My eyesight journey has been challenging, but thankfully I have reached a better place and want to share where I currently am.
Here is a brief summary of my eye issues:
In 2012, my eye prescription changed dramatically within two months. I had poor vision in one eye and a lot of fogginess at night. I realize now that some of this might have been due to dry eyes. The eye doctors told me I had mild/moderate cataracts so I went ahead and had cataract surgery on both eyes.
Six months later, I had Posterior Vitreous Detachment (PVD) in both eyes. This is considered a common age-related occurrence, but it was shocking for me. Cataract surgery often leads to PVD and I was very near-sighted, which increased my risk for complications.
I had a lot of trouble adjusting to the blurs and dark floaters from PVD. I was able to work on my computer and perhaps because of PVD and intense staring, I experienced unbearable pain in my eyes. I went to Urgent Care and was told I simply had mild Blepharitis and dry eyes.
My dry eye journey was lonely and torturous. The first cornea doctor told me that nothing else could be done. (Other than my current regimen, which was wiping my eyelids, using a hot compress and Restasis eye drops).
For two years I lived with constant pain and fogginess in both my eyes. I could see well enough to work, drive and function outwardly. But my condition led me to become deeply depressed and withdrawn.
I did change doctors; I found another corneal specialist who was willing to go through a long list of dry eye remedies. It was very discouraging when nothing brought relief.
I see my eye problems as a metaphor for many other human conditions – so I’m hoping that anyone reading this could relate it to other ailments and struggles. Because hope was something I held onto during grief, I found many of the exchanges on the dry eye forum I subscribe to very touching. I share excerpts of posts from different people over the last few months that paint a picture of what people with dry eyes deal with.
Is dry eye considered a disease or a syndrome??
I would call it a condition that is chronic, which means there is no cure but with regular maintenance the symptoms are bearable in most cases….
The technical term for dry eye is PITA. Pain In The Ass!
I don’t think recovery is possible anymore. All I read everywhere is pain, pain and pain for years with and NOTHING helping. I don’t think life is worth it with this. I’m losing hope.
Don’t lose hope! Maybe we cannot recover completely, but I have hope we all can find a way to live with it, or at least have some good days without as much pain or redness.
I also don’t know anyone personally who has this disease. Before I was in this group I felt very alone. I think it helps “talking” and reading how others cope with it.
Hey, the last thing you can do is lose hope. Just try to live your life one day at a time. Every day new discoveries are made, I know recovery may be slow and painful, but I am sure it will happen.
This group has already taught me so much. My improvement isn’t great but it is better, don’t lose hope! We must never lose hope!
Sometimes I feel like I’m missing something. You have all these eye doctors saying dry eye is very treatable and then all of us patients who suffer on a daily basis. What’s the deal? It’s a constant struggle for some of us.
Dry eye isn’t so much a curable condition, as one we have to manage – at least that is how I feel .
I’d just like to put this out there. I’ve done a lot of research and I’ve come to one conclusion. The treatment of dry eye takes a long time. Certain medical abstracts talk a lot about patients getting discouraged with their current treatment and quit and go on to the next thing. My point is find a doctor that can give you the best diagnosis and don’t get discouraged when you don’t feel better with treatment after a month or two. I’ve definitely improved although not close to 100% but I’m much better than I was when I first started.
I have had dry eyes for 26 years now and I did give up. I felt like no matter what I did nothing was helping, so I did nothing for years. Oh, how I wish I could take those years back and have a redo! I just had surgery for recurrent cornea erosions on Friday because of this.
The problem I have with different treatments is that it seems like any treatment I try seems to irritate my eyes more. My corneal specialist has said to not continue a treatment if it hurts my eyes.
I think I’m gonna explode. Sorry to vent, but I miss my old life terribly. I’m so sad. I’m 26 and can’t do anything except sleeping, staying home. I just want to be free, to live normally, to be happy again…
This disease is so much more psychological than anyone WITHOUT the disease realizes. It’s a major hit to self perception/confidence, as everyone thinks we either cry all the time, are hung-over, stoners, or don’t take care of ourselves. Be strong, tell people about your disease! Tell them when it hurts, when you know it looks bad. Be who you are, unapologetically. Come to us for support and let’s solve this dilemma together!
I am afraid I will have to live with this painful condition for the rest of my life. Either I can give up or stay strong and see what tomorrow holds…
Believe me, after almost 40 years with this condition I should have thrown the towel in long ago. I just keep searching and searching until I find the right doctor and/or the right medication. Promise me you won’t give up. We are all here to support one another. Feel free to drop me a line anytime when you are feeling down and hopeless. There is hope!!!
Until I joined this dry eye forum, I felt very alone with my eye pain. I learned so much from other people who were going through similar challenges. Two important lessons that I learned while searching to help myself were:
A remedy that cured someone else’s eye problem didn’t necessarily cure mine.
There were remedies that were so simple; I didn’t pay attention to following them.
I was extremely nearsighted for most of my life and comfortably wore hard contact lenses from the time I was 11 years old. I painted detailed illustrations without any problem.
As a 55-year-old woman, I could spend a lot of energy wishing my eyes were the same as they were even five years ago. Around the time shortly before my father died and my separation after a long marriage, I began having trouble seeing. I’ve often wondered if the symptoms I had at that time were related to dry eyes.
My cataract surgery became an ordeal when I had to go back for yet a third surgery – a cortical chip was left behind. Then there was a capsulotomy, which was a laser treatment for the edge of the cataract that intruded a few months later.
But it was the PVD that was very upsetting for me. Every moment of my day was challenging because of the all the fog and junk in my vision.
My own son told me, “Mom, I can see why you say things are foggy. Your eyes look clouded!” I often wished I could pop out my cataract lens implants and clean them.
Living with fog and floaters was one thing, but when I had constant pain it was torture. How does a person live with pain every moment of their day? I know many people who do and I am heartsick imagining it.
Within the last month, I’ve experienced improvement with my dry eye condition. I still have dense floaters and fog, but the pain has lifted and my attitude has changed. All I can say is that I am so relieved.
I accept now that my vision is adequate to live my life and is something I will continue to adjust to. Being free from pain is a gift that leaves me crying with gratefulness.
My improvement began when I was at a very low point. The remedy I thought would help me the most was serum tears (made from my own blood). Unfortunately, I had a bad reaction and thought that the tears were made incorrectly or compromised.
After writing about how discouraged I was, a friend from the on-line forum reached out to me. Her name was Susan and we corresponded a great deal to support each other. Susan introduced me to Judi who was the leader of a dry eye support group in another county. Judi had asked Susan if she could contact me because she was very concerned about my serum tear reaction. Judi sent me a lot of information, spoke to me on the phone and we emailed each other.
Two months ago, I traveled to meet Judi and attend one of the dry eye support group meetings where she was a leader. It entailed about five hours of driving and luckily Susan’s husband drove us to the meeting. The time went by easily with them and I didn’t mind the outing.
The meeting was informative. But my reason for being there was to meet and personally thank Judi for helping me. After the meeting was over, Susan took a picture of Judi with me.
Because Judi had found a lot of success with serum tears, I decided to try again. Two weeks ago, I had new serum tears made from another batch of my blood. This time the tears were 100% serum, instead of 20% like I had the first time.
After putting only one drop in each eye, a few hours later I experienced weird sensations and my eyes felt much worse. It took about five days before my eyes felt better and I did not use any more serum after that.
I was disappointed that the remedy I was certain would be my “cure,” was not the case. It was so frustrating; instead of serum helping, it was hurting me!
My improvement began because of Judi and her willingness to guide me. Such simple things made a difference and weren’t very difficult for me to implement.
Drinking a lot of water (at least 10-12 glasses a day) seemed to make the biggest difference. And then there was a certain technique of using an eye gel at night.
Judi had explained to me on the phone that her “gel remedy” was something she discovered on her own and was very proud of; it helped to combat a condition with a very long name that made dry eyes worse.
The condition was known as Lagophthalmos, which in simple words means that eyelids aren’t fully closed when a person is asleep. Judi asked me if someone could look at me when I was sleeping so I’d know whether my eyelids were closed. The thought of asking one of my sons to do that seemed kind of strange. Then she asked me if my eyes hurt when I woke up in the morning; I told her that they most certainly did.
Her remedy involved using Genteal Gel (I tried another brand without results). I always wondered why anyone used gel eye lubricants. They blurred my vision and didn’t bring any kind of relief.
The trick was to get my eyelids to stick together so they would remain closed when I was asleep.
Judi said, “Be absolutely sure not use any other eye drops for at least half an hour before going to bed. You want this gel to be very sticky. Put it in and close your eyes tightly. After five minutes, your eyelids should stay stuck together.”
I followed what she said, and woke up in the morning without pain. This lady was a miracle worker!
I wrote to her and said:
On Sep 13, 2014, Judy wrote:
I was so excited to share with you that I had some better days with my eyes recently. The Genteal gel at night is helping and especially all the water I’ve been drinking. I couldn’t believe that yesterday there was a moment when my eyes actually felt almost normal!
I’m so glad I was able to meet you. I know I’ll be writing about that day. Thank you again so much, Judi!
I am so glad that you are finally seeing some improvement in how your eyes are feeling. One of my greatest joys in life is knowing that God has chosen me as the vehicle to share His blessings given to me with others in need and in pain. I pray that this gift never ceases and He continues to find ways to use me to make a difference in others’ lives in whatever way that might be.
I am thrilled that the Genteal Gel is working for you. I am surprised how many people are never diagnosed by highly-trained eye specialists about this condition. When I was first diagnosed with Lagophthalmos my reaction was, “Oh, no! I had another incurable disease.”
I was told I could have weights sewn into my lids. Then I was told to tape my eyes shut with an X over my eyes at night, which tore the tissue at my eye because it is so delicate. I was told to cover my eyes with saran-wrap at night, which was horrible.
I sat and prayed one night and in the morning my friend suggested I try Genteal Gel. She didn’t mention the way I was to use it, by not putting other drops in beforehand – or holding lids closed till it dry. But somehow God showed me the way.
HE SEEMS TO ALWAYS MAKE A WAY WHEN THERE SEEMS TO BE NONE.” AND SO BETWEEN THE GENTEAL GEL AND THE AUTOLOGOUS SERUM, HE HAS GIVEN ME THIS GIFT OF FREEDOM FROM PAIN AND I AM DOWN TO 4 DROPS A DAY.
I can’t tell you how grateful I am that I can share this. I pray that you can get serum that helps you.
Thanks again for the great news and I feel your condition will continue to improve and pray God also uses you to share His blessings going forward.
Judi, just for fun, I’m sharing what was doing on my computer tonight; it’s one of my songs. I’m a passionate songwriter. I don’t market or sell anything yet but one day I will. 🙂
Ps. When my eyes are better, it will be much easier for me to reach out to find a larger audience. I see God wanting me to have this healing time and it has enabled me to stay close with my children and focus on creating music every day. I have over 60 song arrangements now.
Wow, what a voice you have – it sounds angelic!!! I look forward to listening to it all… Such a gift and blessings!
Thank you so much for helping to lift me up. The depression that resulted from my eye pain has been overwhelming. For this past year, I’ve just stayed inside a lot and have been reclusive.
I didn’t sing for 30 years and after my 5-year-old son died in 1992, I never thought I’d sing again. I picked up my guitar four years ago and it healed me and changed my life. I believe God gave me music to share, to heal others and myself.
I don’t consider myself to be a great singer. I’ve worked hard to improve so I can share my songs with the world. Two years ago, I could hardly keep my pitch. It’s a process. Singing for me is all about opening my heart and allowing my emotions to be free. Your compliments mean a lot to me.
I’ve found a lot of joy with my writing and music. I am peaceful and try to help others who suffer with grief and never imagine feeling better. I’ll look forward to seeing you again in January when Susan and I drive out to the support group meeting again.
Few can understand the debilitation the loss of a child causes. We lost our son at 42 with two young children to lung cancer, another unexplainable debilitating tragedy.
Oh Judi, I am so, so sorry about your son! Now we are not only joined because of our eyes, but also as bereaved mothers.
I could tell when I met you that we would be friends – You are so beautiful and your smile is so kind and loving. Once again God, in His wisdom has brought another special person into my life – there are no mistakes.
It happened during an ordinary day. I was driving somewhere and suddenly I realized that my eyes didn’t hurt.
Originally posted on September 21st, 2014:
It happened during an ordinary day. I was driving somewhere and suddenly I realized that my eyes didn’t hurt.
I blinked a few times and was so grateful that my eyes felt “normal.” Then I noticed how much better my vision was without the fog related to having dry eyes.
I was so happy that I began to cry. I whispered a thank you to God for this blessing.
Although I had some foggy and irritated sensations in my eyes later that day, whatever discomfort I experienced was manageable. Now I knew that my condition wasn’t going to be something that would torture me forever. My faith in healing was confirmed!
A few weeks ago I made a major commitment to follow a healthier path. I stopped eating whatever I felt like; I was so tired of beating myself up about it.
I made healthier food choices and suddenly, everything started tasting better – even an apple was more enjoyable than the chocolate I used to snack on.
I joined a YMCA and began swimming laps a few times a week. On the other days, I fit in a half-hour walk. I continued to play tennis, and went from once to twice a week.
All of this certainly helped my mood but I wasn’t sure if it was going to help my eyes.
But then my eyes began to improve. Because I always hear my lyric lines running through my life, I share with humor one that came to mind with my first huge change. The words in my head were: “My life became clear.”
It was because I started drinking a lot of water!
I’m not sure how many glasses I gulped down exactly, but it definitely totaled over the recommended 8-10 glasses a day. I gave up the iced tea with a lot of artificial sweetener, which was certainly not very good for my body either.
Only the week before, I had gone to my hypnotherapy appointment with a stack of pages related to dry eyes. I told Connie (my hypnotherapist) they were sent to me by a wonderful woman who had reached out to me. Her name was Judi, and she was the leader of a dry eye support group. I wished her group meetings were closer because unfortunately the group met about 2 hours away from where I lived.
Connie glanced at the many pages I stuck in front of her. She pointed to one of them and said, “It says right here that drinking water is very helpful for dry eyes.” She paused and then said emphatically, “You know, drinking water might not only help your eyes; it’s beneficial for weight loss and your overall health.”
Connie pointed to a metal bottle filled with water right there next to her. She shared how she worked hard to drink a lot of water every day.
I listened and my mind was open to it. Why not? I left that appointment and made a commitment to Connie that I’d try to drink a lot more water.
During that next week, drinking water became my new habit.
I was running to the bathroom a lot and it made me think of a poem I had written with a new title. Instead of “My Tears Filled an Ocean,” my new poem was “My Pee Filled an Ocean!”
It was a beautiful summer morning. A week had passed and I was so excited to see Connie for our appointment. I couldn’t wait to share with her how much my eyes had improved. In addition to drinking a lot of water, I had done another remedy at night that Judi had recommended. I will share more about that on my next post.