#28 Judy and Carol

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

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.

Judy

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#27 Judy and Carol

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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#24 Judy and Carol

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.











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#22 Judy and Carol

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

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

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

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

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

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

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

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

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

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

But mindset makes the biggest difference!

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

#21 MY FRIEND, CAROL

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

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

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

July 6, 2015

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

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

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

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



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

Posted on July 7, 2015

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

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

Posted on July 8, 2015

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


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

CRYSTAL TEAR filtered

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#20 SEARCHING FOR A REMEDY

I get depressed when I long for the eyes I had in the past

Posts on my Dry Eye Support Group Site

 July 25, 2014

Hi everyone. I wanted to post an update about my condition. I had been using hormone replacement therapy (pills) and a testosterone eyelid cream for three months. Well, it didn’t help my dry eyes and the doctor said I could stop. In fact, the eyelid cream burned my eyes all the time. I will soon be getting serum tears and pray they will give me relief.

But yesterday at my appointment, my cornea specialist did something else. She used a fine needle like tool to unclog the oil glands in my upper and lower lids. Then she squeezed my eyelids. It wasn’t pleasant. My eyes were sore after, but I think it did help a little. She said the oil that came out was very thick, too.

I’m still using Restasis, eyelid wipes and hot compress. Those things don’t seem to do much.

The worst thing about this condition for me is depression. I don’t want to live this way for the rest of my life and it gets me down. So I try to stay hopeful and will certainly share how those serum tears work once I get them.

November 29, 2014

Just last week, I had to go off Doxycycline. I was having terrible pain in one leg and it became so bad that for two weeks I could hardly walk at all. I had an MRI and went to a chiropractor, but am convinced it was a side effect from the Doxy. I stopped taking it and the pain went away. It’s one thing to try a remedy and have it not work – another thing to suffer from it. Unfortunately, when I used serum tears – my eyes were much worse. I am not going to list all the remedies I’ve tried, but you are all familiar with them on this site.

Ever look for something and later you realize it was right there in front of you but you didn’t see it? Well that’s the best way I can describe something simple that seems to really help me. I’ve been drinking 10-12 glasses of water everyday.

I haven’t stopped searching. Although my eyes are better, they are not completely “normal.” That is something I always dream of having again someday.

June, 2015

I basically have surrendered to my condition. Stress causes my eyes to worsen, so I strive to keep my environment comfortable. Every day, my goal is to maintain serenity. Recently, I tried a few new remedies for my eyes, but found it discouraging when every single one caused my eyes to worsen.

Even though I have continued to drink water, my eyes still bother me and have worsened again.

I get depressed when I long for the eyes I had in the past. Acceptance and appreciation for what I’m able to do despite this, is where I’ve put my focus. It is not easy, but familiar – it reminds me of how I coped with grief. I have a strong belief that healing is possible. I tell myself on bad days that things will get better.

I never want to give up hope.

CRYSTAL TEAR 6 filter

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#17 MY JOURNEY IN SIGHT

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.

Those needles do prick and sting a little. I thought I’d give acupuncture a try but I’m not sure I’m going to “stick with it.”
Those needles do prick and sting a little. I thought I’d give acupuncture a try but I’m not sure I’m going to “stick with it.”

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.

nasturtiums

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.

depressed eye

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.

Needles 2

I am so photogenic. I smile for pictures even with needles in me!
I am so photogenic. I smile for pictures even with needles in me!

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:

  1. There was nothing that I should ever do to my eyes again (surgically).
  2. 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.

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

#14 MY JOURNEY IN SIGHT

For a week after using the serum tears, I was deeply depressed. My eyes hurt and my vision was foggy even though my eye doctor said my eyes looked “fine.”

Originally Posted on September 12TH, 2014:

For a week after using the serum tears, I was deeply depressed. My eyes hurt and my vision was foggy even though my eye doctor said my eyes looked “fine.” I began to lose hope of ever conquering my dry eye condition and reclaiming the “normal” eyes I once had.

I had definitely lowered the bar a while ago. This wasn’t about acuity (vision); it was about living with discomfort and constant pain. I could accept poor vision, but not pain.

My online dry eye support group knew exactly how I felt. I plan to write more stories about this group. It is comprised of men and women, young and old. One woman has lived with her condition over 25 years already. Many of the new members want to pull their eyeballs out!

What I continue to find so beautiful, is how this group is filled with hopefulness. When someone is overwhelmed, another member suggests things that might help him or her.

After my serum tear fiasco, I poured out my heart and received many caring and concerned messages.

My new friend from this group named Susan was very appreciative of my story. She had just gotten a prescription for serum tears because I had encouraged her to push her doctor for it. Now she wasn’t sure whether to try them after hearing about what I had experienced.

Susan and I began writing daily and I was touched by how caring she was. It turned out that she didn’t live too far from me. That was amazing since the online group was international. Susan had suffered with dry eyes for about ten years. She had attended several meetings of a dry eye support group in Orange County, which was about two hours from where we lived. The leader of that group was a very knowledgeable person and quite willing to help others. Her name was Judi.

Susan had recently spoken with her and shared my story; now Judi wanted to get in touch with me.

I was open to it.

Judi began by emailing me a ton of literature and eventually we spoke for an hour on the phone.

Her messages resonated with wisdom, knowledge and incredible compassion. If I allowed an image to form, it would be of seeing myself lying on the ground. Suddenly gentle hands caressed me and sweet messages of hope were whispered in my ears. With the help of those hands, I managed to pull myself back up.

What stood out to me in Judi’s messages were several things. Certainly she had an incredible amount of knowledge. But what really helped me was when she acknowledged the psychological impact of my condition and reassured me that I wasn’t going crazy.

You are not crazy or a hypochondriac; they just don’t have the answer or know how to treat you. God can make a way when it seems there is none. Don’t give up.

And her mentioning God really touched me.

No one can understand how bad the pain of dry eyes can be unless they have experienced it. We have more nerves in our eyes than anywhere else in our bodies. I can remember a young man, many years ago that wanted to have his eyes removed because the pain was so bad; he was in his 30’s. That was so very sad and I wonder whatever happened to him.

I have also struggled with anxiety and depression my whole life, especially after the age of thirty. I have recently learned that anxiety and depression makes the pain of dry eyes worse – and the pain of the dry eyes makes the depression worse. It is a vicious cycle.

I can say that my struggle started 14 years ago and my eyes are better now than when I started but also I have learned to be much more proactive in treating them. It always drives me closer to God, to depend and trust Him – to spend time with Him – to be grateful for His grace and faithfulness in all areas of my life.

Judi

After about two weeks, my eyes recovered. They weren’t “normal,” but perfectly adequate for all the things I do. The pain subsided and helped me appreciate how much better I was. I was relieved that I was able to perform at my niece’s wedding above.
After about two weeks, my eyes recovered. They weren’t “normal,” but perfectly adequate for all the things I do. The pain subsided and helped me appreciate how much better I was. I was relieved that I was able to perform at my niece’s wedding above.

Twenty years ago, I helped bereaved parents, siblings and grandparents as a support group leader for an organization named Compassionate Friends.

Whenever I have written about the things that helped me to survive my grief, I usually mention how I benefitted from support groups. “Hold hands with other people who are also suffering. Take baby steps together,” is often how I frame it.

It seems like I followed my own advice when my dry eye condition began to overwhelm my life.

One of the hardest things for me as a leader at Compassionate Friends was helping the newly bereaved.

They were in shock, bewildered at how their “normal” life had suddenly disintegrated. The grief journey they were beginning seemed like a horror they could never survive and dying to join their loved one seemed far easier.

Part of reason it was so difficult for me (back then), was because I was on the same journey and I couldn’t really say that it would get “better” with honesty. The journey from where the hell began was arduous and excruciatingly slow. The best that could be hoped for was to hold hands with others and hang on.

What I gained from helping other people with grief was a sense of purpose. It made me feel that all of the suffering I went through strengthened me. Now I could do something useful, my son was an “angel on my shoulder,” hugging and holding me as I comforted other people.

It was when Judi reached out to help me that I realized how I was getting something back for all that I had given.

The experience was quite spiritual for me.

As horrible as bereavement was, I have looked at it as a pathway toward enlightenment. Grief took me away from God and eventually I found a way back. I try not to imagine that God orchestrates all the misery in this world. Because of my eye pain, I know I have gained far more compassion and depth.

i just can't see
These are lyrics from my song “Wonder Why.” I recently finished the vocal and guitar additions for my song.

I know that things could be worse and things could be better. The number of painful diseases that exist in this world are endless and I cry for anyone who suffers. Even with dry eye disease, there are people whose eyes are disfigured and scarred, who cannot drive or face daylight at all.

So many things happen in life that I do not understand. For myself personally, I strive to stay positive as I follow my dream.

I keep smiling and there’s a reason for that. It’s because my eye pain has not stopped me from arranging songs, recording vocals and writing new music. I even began composing a new song last week.

I am currently working on a large illustration assignment that is going very well. Somehow, I always manage to find time to write for my blog.

I am very close to all three of my children. I have two sons who live with me (17 and 23) and they keep me busy shopping to fill our refrigerator. I play tennis and I swim several days a week.

How is that possible?

My explanation is that there are angels are all around me.

Coral Rose

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

#13 MY JOURNEY IN SIGHT

My serum drops arrived on a Monday morning. My son burst into my bedroom to announce, “Mom, there’s a big package at the door for you!”

This picture was taken on the day my blood was drawn.
This picture was taken on the day my blood was drawn.

This was originally posted on September 9th, 2014:

My serum drops arrived on a Monday morning. My son burst into my bedroom to announce, “Mom, there’s a big package at the door for you!”

Only a week before, I had driven for two hours to a distant facility to have 21 vials of blood drawn that would be used to make these revolutionary eye drops.

Of course, the dry ice was far more interesting for my son as I removed the seven precious bottles of serum. I put six in the freezer and one in the fridge. I wondered how long it would be before I could start squeezing the bottle and putting the tears in my eyes.

Serum Tears and box

I looked to see if there were any papers in the box but there were none. There were a few instructions on the bottle telling me to discard it after a week and to keep it refrigerated at all times.-

By late afternoon, I checked the bottle in the refrigerator and it wasn’t frozen anymore. It was time to use them! The drops that went into my eyes were cold, slimy and kind of shocking. They were definitely refreshing. I imagined my eyes were soothed every time I blinked.-

The instructions on the bottle said to put one drop in each eye every two hours. I didn’t follow a tight schedule, but used them whenever I saw the time had gone by. By bedtime, I had used them at least 4 times.

I could hardly believe that bottle contained my own body fluid!

Serum bottle

That first night held a momentous event for me. I performed for the first time in eight months.

Before my dry eye condition overwhelmed my life, I used to perform weekly at the Open Mic at Kulak’s Woodshed. From the moment I walked in, everyone there welcomed me back with open arms.

Singing in front of an audience was still difficult with my eye discomfort. Before I began performing, I mentioned to the host that I had “eye issues” and it was difficult for me to open my eyes.

Playing at Kulak's 12

Unfortunately, everything changed the next day.

Just after I woke up I noticed my vision was cloudy. It was rare for me to go back to sleep, but I did so because I thought perhaps I was just tired.

By evening, I finally acknowledged that something was wrong as the fog in my eyes became more and more dense.

Now I was far less excited to continue putting the serum drops into my eyes. I wondered if perhaps this was something I needed to stick with. Maybe my eyes were healing this way?

This post on my Internet Dry Eye forum really gave me a lot of hope.
This post on my Internet Dry Eye forum really gave me a lot of hope.

I posed my question to the people on the dry eye forum I belonged to. One woman responded and said she had experienced a little discomfort at the beginning but after that she was vastly improved. I continued using the drops.

The next day, my pain was even more intense. Clearly this was not normal. I tried calling the pharmacy that made them. Their phones were not working.

I felt so discouraged and disappointed. (Eventually, I did reach them and they took down information from me to look into whether my drops had a problem. I never received a call back.)

It was very hard for me to concentrate and do my illustration work. All I wanted was to be in the place I was before I began using the drops. About a year ago, I was dealing with this level of severity almost every day. Now I appreciated my progress.

By Friday, I had already stopped using the tears and prayed things would get better. A friend told me that my eyelids and face looked swollen. I decided that I should to be checked by an eye doctor.

But when I called, I was told there were no appointments available.

I continued to insist that I needed to be seen and was given a lengthy evaluation over the phone. I listed my symptoms and the receptionist seemed unconcerned. She still would not give me an appointment so I told her I wanted my doctor to call me back.

Two hours later, the receptionist called me back and said; “Your doctor said she doesn’t need to see you today.”

Butterfly of death

I was livid! I felt smoke coming out of my ears and eyes. At that moment, I hated my doctor.

I took a deep breath and continued to insist upon an appointment. My heart was pounding while I was put on hold. The receptionist finally came back on and said coldly, “Okay, you can come but you’re going to have to wait a very long time.”

I hung up and began crying. I decided to call a good friend before leaving in order to calm myself.

My friend used to work in a doctor’s office. She said, “Don’t take it personal. You were being screened out and that’s done regularly. Your doctor probably wasn’t even told about your situation.”

Scared Eye

An hour later, I was in the waiting room. I was prepared to wait a long time and certain I had done the right thing by coming in to get checked. I was the last patient before lunchtime and the examining room area was deserted. Finally my eye doctor came to get me.

I told her how much I appreciated her fitting me in during lunchtime; I didn’t want to appear angry.

I described the pain and fog that began only a day after using the serum tears. My eye doctor said, “I told you serum tears weren’t a cure.”

But I had many questions for her because in the last few days I had learned a lot. It turned out that my bottle was only a 20% solution and I had heard that wasn’t nearly as effective as 100% serum. A reaction was unheard of.

She replied, “Well, if they bothered you with 20%, then it would be even worse if they were 100%.”

I asked her if the saline could have bothered me. She said it definitely wasn’t the saline. But it did look like I might have contaminated the bottle. I had touched it to my eyelid whenever I put the drops in. It sure would have been helpful to me if there had been clearer instructions.

Did I have an infection? This cornea doctor would soon find out.

As she put the yellow dye into my eyes, I gasped because it burned so much. Only a moment after looking with a magnifier, she announced in a chipper voice, “I don’t see any problem at all; your eyes look very good actually.”

Now I felt embarrassed for insisting upon this appointment.

I walked out of the building and didn’t know what I was feeling. I was glad I didn’t have anything wrong, but at the same time I began to doubt myself. I was such a demanding patient.

And my butterfly of hope was smashed to the ground.

Facebook Post on Blog

The support I received from my Internet group helped me so much. Only the week before my tears had arrived I had rallied to encourage another woman to get them prescribed by her doctor. After my ordeal, this woman was very concerned about whether to move forward to get them.

She and I began corresponding privately. I had made a new friend and her name was Susan.

Susan and I

To be continued . . .

Playing at Kulak's 11

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

#12 MY JOURNEY IN SIGHT

Sometimes, if feels like my eye problems have taken over my life. I seldom perform with my guitar anymore and prefer to be in my apartment. My interest in traveling has disappeared.

Spider and the Eye

Sometimes, if feels like my eye problems have taken over my life. I seldom perform with my guitar anymore and prefer to be in my apartment. My interest in traveling has disappeared.

A few weeks ago, I described my struggle with eye pain and subsequent depression to my hypnotherapist, Connie. I said, “It’s like I’m wrestling with a treacherous white spider.”

I told her how when I had the upper hand (where I had distracted myself from the pain), I stood on top of that ugly spider and shouted, “You are not going to wreck my life!”

And then there were those other moments.

I could see myself lying prone on the floor held by the painful grip of that “white spider of sadness.” I was discouraged and overwhelmed; overcoming it felt hopeless. And I felt like I was a failure for not being able to accept it.

Connie listened thoughtfully and then she said, “Let’s talk about acceptance. How would you define it?”

The first thought that came into my mind had to do with grief. Healing from my son’s death took a long time and was certainly the hardest thing I ever had to accept. I said, “My struggle with grief was much harder than this. For years I was angry and certain my life was ruined. But with healing, I have truly accepted that he is gone and will never grow up. I’ve chosen to look at him as my angel. I can now see that his death didn’t ruin my entire life and even had a positive affect upon me in some ways.”

Then I mentioned a few words that came into my mind to define my acceptance. They were: resignation and surrender. I battled grief for many years and with my surrender came peace.

Then I said, “Maybe I can’t accept my eye pain because I’m still searching for a remedy that will help me!”

At that moment, I felt certain that was the reason I was struggling to accept my condition.

This butterfly is a Rose Swallowtail. I love to add my own artwork to stories on my blog.
This butterfly is a Rose Swallowtail. I love to add my own artwork to stories on my blog.

Although I was miserable, my dry eye doctor told me I had to wait several months before making an appointment with her in order to give the current remedies time to take effect.-

I was on hormone replacement therapy and began using a testosterone compound cream on my eyelids. I prayed these two things would help alleviate my dry eye pain. The theory behind taking hormones is that menopause causes dryness.

Unfortunately, I suffered even more because the testosterone cream I rubbed on my eyelids caused a burning sensation in my eyes. I diligently tried not to rub my eyes but it didn’t make any difference. My eyes were on fire!

It became difficult waiting to see my doctor. I plodded through my days trying to distract myself from the pain and fogginess in my eyes.

Then I became extremely emotional and edgy. When I had a blow-up with my son where I was shrieking at him, it was really out of character for me. I was always able to hold my emotions in check and although I wanted to express myself more now – flying off the handle was not my style.

Sunset 3

I had been taking hormones for 2 ½ months. It was clear they weren’t helping and perhaps were actually contributing to my moodiness. I decided to discontinue them. I still used the testosterone cream every night, as well as Restasis eye drops, compresses and eyelid wipes.

Finally my eye appointment arrived. I was determined to convince this doctor to give me a referral for serum tears. It wasn’t simply that my HMO would pay for it – it was because having those tears made from my own blood was a complicated process. I knew a woman who travelled to several far away locations to get them because they made such a difference for her.

When my doctor came into the room, she was very serious. This dry eye specialist was very professional and I could tell she cared even though she didn’t smile.

I updated her on the regimens I was following. Ironically, tears streamed down my cheeks when I shared how my life was horribly affected by my dry eye condition.

I became very emotional when I said, “I’ve fallen to the ground three times since I last saw you. It wasn’t because of my vision. It was because my eyes hurt so much that I can’t really open them to see where I’m going.”

I began sniffling and said, “I wish I could have seen you sooner. I’ve been waiting months for this appointment!”

After she examined me she said matter-of-factly, “I’m going to try something on you today that has helped some of my other patients.” My curiosity piqued – what was she going to do now?

Spider and the Eye B&W

She asked me to rest my chin and press my forehead against a large piece of equipment. Then she opened a bag of tools that held needles and tiny tweezers. My heart pounded as she explained how she was going to open my tear glands and squeeze out the clogged oil.

She began by poking my upper and then lower lids repeatedly with a sharp tool. She said, “I can see your oil is very thick. If this helps, you can come back again and I’ll do it more.” All I could think of was how I wanted to run away forever from this hospital!

I flinched with every sting. As she worked she also pinched and squeezed my eyelids; I was gasping and hoped it would be over soon.

My eyes were sore and dripping as I walked to my car. I prayed it would help. But as I drove home, I was elated.

It was because she agreed that I could get the serum eye drops. Within a week, I would be receiving the information for them.

Eye on Facebook

I subscribe to a support group for dry eyes on Facebook. There are approximately 150 members and most everyone is going or has gone through so much of what I have. Many members bemoan how nothing the doctors gave them helped, but occasionally someone mentions a miraculous moment of relief they found.

About six months ago, I asked if anyone on that forum knew about serum tears. No one replied or mentioned using them. That told me that it was definitely a tough remedy to obtain. But a “friend of a friend” spoke to me about them and I definitely wanted to get them.

After my recent appointment, I wrote an update about my eye condition on this site. I ended my update with these words:

For me, the worst thing about this condition for is depression. I don’t want to live this way for the rest of my life and it gets me down. I try to stay hopeful and will certainly share how those serum tears work once I get them.

After I wrote my update, I received this comment:

Judy, my ophthalmologist told me about what you’ve described and said this: “Doctors USED to take needles and open up the glands and then express the clogged oil but they found out that it did damage to the oil glands so that isn’t done anymore.

And then that same day, there was a post from a woman who had used the serum tears. She wrote:

I just wanted to share: For the last five years I’ve suffered terribly with severe dry eyes.  gave me my life back. I’m not exaggerating. It was mentioned by the fourth doctor I saw as a last resort. It should have been at the top of the list.

Here were more comments that followed her post: (my words are black and bold)

Why are doctors so hesitant to try them? Do they have a lot of bad side effects?

They don’t. Over and over, doctors kept pushing the pharmaceuticals even after I explained that they didn’t help and caused extreme irritation. This is what happens with medical treatments that are proven BUT have no pharmaceutical company to promote them – doctors don’t hear about it. The serum drops changed everything. I’m so glad I didn’t give up!

I believe it’s mostly just lack of familiarity. Doctors don’t read the studies so they aren’t aware how good serum drops are for healing the ocular surface, nerve damage repair etc.

I was ready to pluck my eyes out. I’m not exaggerating. It’s only been a week and I would say there has been at least a 25 percent improvement. My eyes are definitely functioning better. The associated Blepharitis has dramatically improved, as well. I am thrilled that I tried this.

Well, I have been trying to get my HMO to prescribe them for me. I had to try a lot of useless remedies first but now I’m going to get them soon. I even met and spoke to another woman who told me that they really helped her. So thank you for sharing and I’m so glad you found relief!

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

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