It’s horrible to think that the very regimen we use to help ourselves could cause problems!
I have shared many posts of my correspondence with Carol, a good friend I made through my on-line Dry Eye Support Group.
Even though our common topic was our eyes and adjusting to discomfort, we supported each other through other things, too. Carol was anxious to hear how my appointment went with a new eye specialist last month.
I didn’t expect much from my appointment. I wrote to her my impressions when I came home:
While I was waiting for the doctor I asked the assistant if he was a dry eye specialist. Turns out he was a general eye doctor. I had requested a dry eye specialist referral, so I was a little disappointed. Still, he was relatively inexpensive compared to the other outside doctors I’ve gone to. So if it didn’t work out, I was only out $150.
This doctor was kind and very nice. He said that I don’t have typical dry eye – but he said my eyelids were severely inflamed, however. None of my doctors have ever explained that. He said I didn’t have blocked glands, Blepharitis, conjunctival chalasis, incomplete blinking or demodex mites.
He prescribed some steroid drops for me to try. He gave me three different strengths and said to try one each week and slowly the dose would get weaker. After that, he wanted me to try taking Clariton – it seems he thinks it’s more of an allergy. He gave me all of the medication (the were samples), which was nice, too. I am hopeful that maybe this will help me! It sure feels great to have some hope again.
If this fixes it, I’ll wonder why I had to suffer for 3 years. But not really – I just want to feel better. He did tell me not to use artificial tears so much. I was using them every hour.
A few days later, I wrote again to share:
Good morning, Carol. I am elated to feel some improvement – I think the steroid drops are helping with my discomfort. It’s not normal/perfect or anything, but that slight difference is wonderful and I’m hoping it will continue to get better.
It’s ironic, but my other dry eye doc had given me some steroid drops that I never used because of a bad reaction I had to one in the past.
I feel like this time, the doctor seemed more aware of things and I was willing to trust him.
I do think I made my problem much worse by using so many artificial tears. It was a vicious cycle.
My friend was very happy for me and supportive. But not long after my appointment, Carol wrote to me that she was very sick and going to the hospital. Her problem was “low sodium levels.” She told me she would write later on and I anxiously awaited hearing from her. She lived across the country from me. I was her email buddy, but how would I know if she were okay? I was worried.
Finally, I received a message from her.
Back home yesterday afternoon but not feeling so great today. Curiously, eyes felt OK while I was in hospital and had only Restasis Monday morning early. Not even that Monday night as I didn’t get moved from ER to room until 10:30 pm so had none of my typical meds, compresses, lid wipes, etc. during the stay. Didn’t even shower from early Monday until I got home yesterday afternoon as I had all the cardiac monitor wires attached plus IV catheter stuck in arm for whatever. It makes me wonder if I overdo the eye drops, cleaning, compresses, etc. Even my vision is clearer. So I know what you mean about that, too.
Wow, Carol – you had so much going on. Do you know what was wrong? You didn’t say much at all about it and I imagine you probably hate even talking about it. When I took care of my mom, she had a few hospitalizations from “electrolyte imbalance.” I remember her sodium levels were low. I could tell something was wrong because she became very disoriented. It sounds awful.
It is interesting about being off the regimen and feeling better. I am not using any more artificial tears; they made my problem worse. It’s horrible to think that the very regimen we use to help ourselves could cause problems!
It turns out that the medication the urologist put me on to help control so many urges to urinate at night can severely deplete sodium. When he prescribed it, I asks specifically about concerns using it and he said “it is given to kids to control bedwetting” indicating to me it is harmless. I looks it up online and I did see it can deplete sodium but I eat plenty of salt so thought no more of it. Apparently it doesn’t work quite like that.
When I felt terrible on Monday, and by late Monday afternoon I felt like I was dying. Apparently the dying feeling wasn’t far off. Sodium level is “critical” and can lead to seizures and death. Still not quite to normal and I still don’t feel great. So fed up with taking one step forward and thinking I am better then made to go 5 steps back and feeling it is hopeless. Ok, that is enough.
My eyes take all of my energy to cope and it leaves little left for coping with everything else.
I share my correspondence with my friend, Carol, from my on-line Dry Eye Support Group. Her words are in blue.
Judy, you have had such a rough time lately with your eyes. It causes everything to seem worse. It’s only a little over a week until you go to a new eye doctor. I so hope that will give you a new direction. Seems like we are always trying something!!! (Or at least buying something to try.)
My eyes were not good Saturday, but fortunately I was able to keep them closed at my granddaughter’s concert. Anyway, I have no clue why, but my eyes were fairly good yesterday and life seemed almost normal. Who knows what today will bring. That is one of the worst things about this disease; it keeps me on edge. But I am grateful to have good day; they are so rare.
Judy, I wonder how good Paleo is for you. Your emails actually sound worse since you have been on it. Perhaps you could adjust it some more?? I asked a dietitian friend about coffee and she said a cup a day shouldn’t hurt. I have read so many benefits of coffee, too. But don’t do it if you really think it hurts you. Just sounds like you might need it.
I did decide to cut Diet Coke to my morning one that has caffeine in it. Switched from caffeine free diet to water rest if the day as I am concerned it may be bladder irritant that might be causing night-time issue. Have done that for a few days. Will see. Take care, Carol
Hi Carol, well, it’s good you’re trying new things – maybe something will help. Wouldn’t that be great? As far as a remedy setting me back, I’ve just learned to go slow in case something is irritating. I’m finding the coconut oil isn’t causing a problem, but it’s not curing my eye issues either, unfortunately.
I do notice that my mood seems to make the difference with overcoming the pain. Today I had a rough day – I was outdoors a lot running errands and it was windy and chilly. I closed my eyes as much as possible, but they are burning a lot right now. I pray tomorrow my eyes will be better.
I’m feeling less and less certain about Paleo – although I’ve been pretty good about following it. Today, I succumbed to an oatmeal raisin cookie while running those errands. It was so good – but I still haven’t had dairy, coffee or sweeteners.
Well, I better go put on my hot compress and go to bed. Wishing you a great eye day! Wish it could last and maybe one day it will.
Judy, the burning sounds bad. I keep having the “if only” thoughts like “if only fogginess would lift” or “if only foreign body sensation would stop” or the biggie “if only I hadn’t had the surgeries.” I know those are not productive thoughts, either.
Mood has a lot to do with it, but it’s easier said than done. Glad you are less weepy. I know I am having a better day if I don’t feel like bursting into tears all the time. I was never like this and miss being “normal” so much. I used to just go about life without thinking about my eyes.
My daughter emailed me photo of beach house they are renting for spring break and invited me along. I went with them a couple of years before my eye problem; such a fun time. Now it doesn’t seem possible to do anything like that. I can imagine feeling miserable and just wanting to be home. It would make everyone else miserable, so it’s better for me not to go.
Maybe you can adapt Paleo to suit your needs?? You have really stuck with it for the most part. I think cutting back on Diet Coke has helped me. But life is too short to give up everything. And heaven knows eye issues have taken so much already.
Good morning, Carol. Yesterday was a gorgeous day. My eyes were foggy overall, and I was grateful that I had a few better moments where they didn’t hurt.
I had lunch with a friend and she told me that she could see that my eyes looked painful. I rested in the afternoon, but my eyes were still foggy. Today they are, too.
I feel sad for you with the decision about not going with your daughter and her family to the beach house. I wonder if you would be miserable? It seems like you’ve come so far with your eyes from where you started. It is much better than it was. If you follow your regimen there (a pain in the a…) I imagine it would still hold wonderful times for you. The thought of missing it feels sadder to me. I don’t think you would make anyone else miserable – they would be so grateful having you there. And who knows – maybe your eyes would feel great at the beach because of the moisture. Just giving you something to think about. Have a good eye day!
Judy, it is sad to miss beach with daughter and family but I would rather have the good memories of having gone in the past. Hope you have a better day.
Oh, Carol, I am trying hard again to stay positive – I had such a bad day yesterday.
I was really looking forward to seeing two good friends of mine for dinner. But my eyes were very foggy and sore. I put a little coconut oil on the lids before going out in hopes that it would soothe me. Unfortunately, it blurred my vision and I had trouble finding the restaurant where I was supposed to meet my friends.
I was frustrated, but found some parking and had to walk a few blocks. It was so stressful. Even though I was upset, I was still managing as best I could despite my eye pain.
I finally saw the restaurant but had to climb a flight of stairs. I guess with the fogginess I didn’t pay attention and my shoe caught on the first step. I fell forward and landed on the steps, but not too hard. My knees were scraped and chin throbbed. Several of my fingers were twisted but not broken. I sat there and cried for a few minutes – no one saw me in the darkness. Finally, I picked myself up and met my friends. Most of the dinner I was teary and my friends were very worried about me.
My eyes take all of my energy to cope and it leaves little left for coping with everything else. I’ve dealt with much harder things than my current situation. But my eye problem just overwhelms me and I’ve never been in a situation where I’m physically so down that I cannot mentally overcome it.
Today, I’m very sore but thankful I can bend my fingers enough to still type. I was so lucky I didn’t break anything.
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.
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.
Wish I had known more before I had cataract surgery that brought this condition upon me. I wouldn’t have done it knowing what I do now.
I share my correspondence with my friend, Carol, from my on-line Dry Eye Support Group. Her words are in blue.
Judy, testosterone cream sounds awful!! A friend said she tried Restasis and it burned so badly, she stopped after 4 days! It is so expensive to try and that’s awful when it doesn’t help. I have not tried it and serum tears sound pretty awful too.
I must give you credit for getting me out in the car by MYSELF a today!! I saw a movie, which was just what I needed. I heard your voice telling me I should try because you said (and I paraphrase) that you feel better when you add diversion. It was true today for me and I thank you. You have truly been inspiring and so helpful!!
Carol, I am so happy you did this diversion of going to see an uplifting movie. It is absolutely amazing how our mind can help us feel better. Awesome!!!
Things that seem awful become tempting when you hear it could be a cure. And for serum tears, I had to travel really far to have the blood drawn. I still have vials of them in my freezer. I put in only a few drops and then my eyes swelled up and I couldn’t see well for days. It probably took me a month to feel better.
I use Restasis eye drops, but I don’t think they help at all. But I’m afraid to stop, because then my eyes might get worse.
I’m so glad I’ve been inspiring. Don’t give up hope and certainly it’s important to live your life despite this condition. Good job!
Yes, our mind can channel positively. I was in a deep dark hole, so you can understand how much you have helped me already. How awful for it to take a month to recuperate from those tears!!!!
I hate all the drops myself and sometimes they really seem to make me feel worse. Yet my eyes are dry, so I do what I am told by my doctor. Living life day by day has been challenging and sometimes hour by hour is difficult. Thank you for letting me “talk” and being so understanding.
I wish I had known more before I had cataract surgery that brought this condition upon me. I wouldn’t have done it knowing what I do now.
I’m so sorry you regret the surgery you had. Unfortunately, there are percentages and sometimes those rare complications happen to someone! I had cataract surgery; I also wish I were one of those people who loved the result.
I do realize rare complications do happen, but I just didn’t think it would happen to me!!! I had cataract surgery, too, but I also agreed to laser astigmatism correction. The lure of being able to see without glasses was too much to resist. I think that was the mistake, although no one will say. And to add insult to injury, I wasn’t totally corrected so I still have to wear glasses.
At least I am older. When I read comments from people in their 20s with eye miseries, I feel so bad for them. Again, thanks for all your support and information. You have been so much help.
I feel like I have to keep trying things in order to discover something that might help.
I share my correspondence with my friend, Carol, from my on-line Dry Eye Support Group. Her words are in blue.
Losing a child must be the worst possible life event. You have had more than your share, yet your attitude seems so positive about facing challenges.
Finding strength when one feels so depleted and hopeless is very hard. Distractions probably do help as they get your mind focusing on something besides eye problem. This is still new to me: realizing it is chronic and won’t go away as I was originally led to believe.
I am happy to read yours don’t hurt as much as they once did. How long did that take? There are so many things to try yet so little seems to provide relief. Your mindset is a lot more positive than mine is now!! But your words and support do give some hope. Thanks, again, I really appreciate it !
I’m still learning how to accept this condition. A wonderful woman also helped me when I was down.
I know you are just beginning this stuff. It’s one thing to try remedies with hope of relief, but for me, the hardest part was when those things made my eyes worse! I tried testosterone cream and it burned so much. I went on hormone replacement therapy that not only didn’t help, it made me even more miserable. The one thing I hoped would help were serum tears; they set me way back. I had a terrible reaction from Doxycycline, too.
But I feel like I have to keep trying things in order to discover something that might help.
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.
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.