#31 LESS IS MORE

I was so thrilled that my eyes weren’t aggravating me throughout the day. I wanted to shout out with elation, “I am cured!!!”

The relief that I felt after my appointment with a new eye specialist surprised me. I had low expectations and little hope. I had only made this appointment because my cousin pushed me. I had called her and cried when she asked me how my eyes were. She insisted her doctor could help me. My cousin’s eye doctor was far away and referred me to this new one.

Initially, I was a little anxious to use steroid eye drops that the new doctor gave me. In the past, one caused a bad reaction. Plus, an eye doctor I had seen a year earlier suspected that I had Glaucoma. I hoped I wasn’t doing anything risky since steroid drops could increase eye pressure. But I trusted this new doctor and planned to follow up having my pressures checked. The soonest appointment with my regular HMO eye specialist was in three months, unfortunately.

Until then, I was so thrilled that my eyes weren’t aggravating me throughout the day. I wanted to shout out with elation, “I am cured!!!” Unfortunately, it wasn’t like that. I was aware of them still, even though they were so much better overall.

I let the new doctor know that I had found improvement. Of the three steroid samples he gave me, only one really helped. It was called “Durezol.” The other two were Lotemax and Alrex.

He told me that Durezol was the strongest and that his suspicions were confirmed. I did indeed have an allergy. I asked him, “How do I know what I’m allergic to?” His response was that I was the best judge of that.

When the Durezol bottle ran out, I had a few bad days. I was discouraged but not hopeless anymore. I emailed the doctor to update him and to ask him for advice on what to do next, but he didn’t reply.

I longed for artificial tears but avoided them. I still continued to use Restasis but noticed that with the momentary relief of any eye drop (including Restasis), within a short time my eyes began to burn and hurt. The eyelid wipes that I had relied on were actually one of the worst irritants for my eyes.

Eventually, I called and reached the doctor a week later. I told him my suspicions – I was allergic to the wipes and all eye drops. I asked him what to use to wipe my eyes instead and he recommended baby shampoo. I tried his recommendation of Clariton, but wasn’t really sure if it made a difference or not. On days where my eyelids felt more inflamed, I took Clariton.

I began to learn that there was a difference between my dry eye pain and eyelid pain. The dry eye pain was something I felt every morning when I woke up. I had stopped using gel at night because I realized that the gel also affected my eyelids. Thankfully, with blinking my morning dry eye pain went away.

It was the eyelid pain that really drove me crazy. I felt sensations in my eyes, burning and heaviness – almost like I had stickers on my eyelashes.

I can tell that my eyes are feeling better because I am able to open them more.
I can tell that my eyes are feeling better because I am able to open them more.

This was definitely a twist for me after feeling hopeless. For over a year, I had given up on finding a doctor or remedy that would save me. But really, I was seeking answers and trying things again – so I had saved myself!

And this was definitely an example of “less is more,” a concept that fits into so many areas of my life.

It turns out that my friend Carol also realized the same thing about her regimen, which I shared on my last post. Her eyes were feeling better as a result of doing less. It was so ironic that we both reached the same conclusion around the same time. Sadly for Carol, the revelation of this came after being hospitalized. She had had a bad reaction to medication that was life threatening. How upsetting is was that trusting a doctor and medication could end up being risky instead of helpful.

The paleo diet I had adopted for three months hadn’t made a significant difference, but at least it hadn’t harmed me at all. Much of it was healthier. I eased back into a less restricted diet, but still avoided coffee and artificial sweeteners on a regular basis. So many of the remedies I had tried had hurt my eyes. Now it made sense. My eyelids were so sensitive and affected by every remedy I’d tried.

I had another one in my back pocket, though. I had ordered Optimel eye drops and they were coming from Australia. They were made from Manuka honey and I was willing to try them.

It was a great thing for me to have hope again!

© 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.

#30 Judy and Carol

It’s horrible to think that the very regimen we use to help ourselves could cause problems!

Just a handful of some of the supplements I was taking to help my dry eyes. Unfortunately, they didn't do much for me.
Just a handful of some of the supplements I was taking to help my dry eyes. Unfortunately, they didn’t do much for me.

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:

Hi Carol,

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.

Hi Judy,

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!

Hi, Judy,

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.

Aren’t you sorry you asked lol??!!

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#29 ALL OF MY TEARS

I think laughter is so healing and big help in dealing with chronic pain.

This post is taken from my Facebook Dry Eye Support Group. I am sharing something that actually carries a little bit of humor.

LORI: Seriously? I have a drop for every occasion!

Lots of Tears

SUSAN: Nice stash! I know. I have about six different ones myself, including the ones that didn’t work!

LORI: My hubby says my bathroom looks like an isle at Walmart!

‪JOYCE: Did you break into my house?

CAROL: Looks like my closet. Plus some.‪

MARGARET: I have a few too. But mostly stick with two.

JUDY: Oh, drop it! I sensed your post was “dripping” with sarcasm. I sure wish I had something more “refreshing” to add! (I love puns!)‪‪

LORI: You’re awesome Judy!

JUDY: Aw! It’s nice to know my puns are appreciated. My puns appear in the “blink of an eye!” But I just can’t “Systane” them!

LORI: I actually have eye drops on my shopping list today and my husband says ARE YOU SERIOUS? Lol. I think I need a 12-step program.

‪CAROL: There’s probably a 12 Step Drop lol!!‪

KOSTA: The first step to beating addiction is admitting you have a problem.‪

JUDY: I think it’s the other way around. We already know we have a problem and the “addiction” is really just a desperate coping measure!

‪ KOSTA: Judy, you’re right.

‪LORI: I put drops in when I’m alone. I hide the amount of times I put drops in from my friends/family. I lie about the $$$$$$$$$$ I spend on my drops to my husband. I sneak around to different stores when I find a sale on drops but I don’t have a problem though. I could stop if I wanted to . . .

DONNA: This whole post is cracking me up!!! My dear friends, I needed a laugh!!!!

JUDY: Me, too. I think laughter is so healing and big help in dealing with chronic pain.

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

#27 Judy and Carol

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

#26 IT’S ONLY DRY EYES

Probably the most difficult part of dealing with my condition is feeling abandoned by doctors.

Probably the most difficult part of dealing with my condition is feeling abandoned by doctors.

It began with my first visit to Urgent Care with terrible pain in my eyes. I was examined and sent home after being told, “It’s only dry eyes.”

Eventually, I was given a referral to a corneal specialist. I was so hopeful I’d get some relief. But instead, he told me, “Your condition is incurable, and you’ll have to learn to manage it. Continue with hot compresses, eyelid wipes and use Restasis eye drops twice a day.”

As I left that appointment, the pain in my eyes felt overwhelming. I wore sunglasses and tears were streaming down my face. The irony of tears and dry eyes didn’t escape me. I openly sobbed once I was inside my car.

On my last post, I shared the sad feelings expressed by “H” – a young girl who was suffering and lonely. She finally went to see a new doctor.

She posted below:

“H:” Is there anybody who has normal Schirmer results but still has so much dryness? My doctor told me that I don’t have dry eyes. She said my results were normal and that I don’t have Blepharitis either.

But I have terrible irritation and my eyes really have pain. When I cry or put drops in I feel better. She said to stop searching for dry eye treatment and to get psychological help. But I really suffer; she doesn’t understand. I don’t know what to do …something is affecting my eyes too, but the doctor cannot find it.

“M:” Go to another doctor and see if they confirm those results, without sharing that you’ve already been to see another doctor.

“H:” ‪ Ok. I will do this. But doctors can’t see my dryness. I don’t believe them.

“M:” Me neither, the only thing I get is drops. I have not met one yet that knows about dry eye treatment. The U.S. seems to have some doctors that can help their patients. I’ve struggled to help myself.

“H:” Yes, I am tired of struggling.

‪ “M:” Please don’t give up. It’s definitely a struggle and I know how you feel. I used to cry after seeing the doctor, I felt hopeless, but over time it has gotten better.

”H:” I won’t be able to do my job or anything because of eyes. My eyes never heal.

“M:” Try not to think too far ahead because that brings stress and makes things worse, I know I’ve been there. It took me a long time to improve but I still get bad days. Stress is the worst thing for us.

”H:” Yes but I can’t prevent stress because of my eyes. I’ve seen so many doctors and they can’t find anything. The first one said, “You have dryness; you must have plugs.” Another one said, “You have MGD, and there is no cure.” The last one said, “You don’t have dryness.”

‪According to doctors I shouldn’t be suffering, but I am!

“B:” Go to another doctor, get plugs –  maybe they’ll do gland expression. My own tears are also irritating because the oil glands don’t work. Hot packs are a little help; mostly they are relaxing. Never let a doctor tell you it’s all in your head.

”H:” There is no gland expression here. I can just do hot compresses at home.

‪”L:” You might try to get psychological; I know it has helped many other people.

“A:” It sounds like neuropathic pain, which ABSOLUTELY is related to dry eye.

“H:” What can I do for neuropathic pain? I really suffer from it!

Writing this blog put me in a place of looking back at all of my doctor visits related to my dry eye condition. I sorted through every office visit summary and copied whatever diagnosis was there:

BILATERAL UPPER AND LOWER EYELID BLEPHARITIS

DRY EYE SYNDROME, BOTH EYES – Primary

OCULAR PAIN, BOTH EYES – PRIMARY

VITREOUS OPACTIY, BOTH EYES

DEGENERATIVE MYOPIA, BOTH EYES

POSTERIOUR VITREOUS DETACHMENT, BOTH EYES – Primary

BLEPHARITIS (INFLAMED EYELID)

 

VISION DISORDER – Primary

Not one of them mentioned MGD.

Meibomian gland dysfunction (MGD) is one of the most common diseases observed in clinics; it influences a great number of people, and is the leading cause of evaporative dry eye.

The more that I read about dry eyes, the more convinced I became that I had MGD. This became a new road for me to follow.

cropped-closed-eye-copy.jpg

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#25 DON’T GIVE UP!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It’s that way for all of us.

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#23 Judy and Carol

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.

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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.

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© 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.

#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.

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© 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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