#35 MY SECOND THERMOFLO TREATMENT

A setback won’t put me back where I started, although sometimes it feels that way.

The nurse administering my treatment was a kind and caring woman. She had me lie down. As she started the machine, she put on soft meditation music and I told her it was lovely. She replied, “Oh, thank you! I searched it up and decided to put it on whenever I do these treatments – it helps to relax me, too!”

Today there would be no Beta-dyne brushed on first to irritate my eyes. I closed my eyes as she squeezed out a cool gel over them. The machine began to hum. I could have been in a dentist’s chair, but instead I was having my eyelids brushed.

She said, “After four minutes I am going to press harder. It shouldn’t hurt – but I am trying to express the oils thoroughly that way.”

I asked her if she would see the oil being released. She explained that it showed up as a cloudy yellowish color. The clear gel changed as the oil mixed into it. At the end she actually showed it to me and I took a picture.

She told me that she had time to research some of my questions. One of them was how this differed from Lipoflow. She said that Lipiflow was more invasive; that it required anesthetizing the eye and having a barrier lens put on as protection during the treatment. I didn’t know that.

My HMO did not yet commit to buy this $23,000 machine. I was one of 14 test subjects. Other than me, only one other person did not report relief after treatment. But I was hopeful that this second treatment would be different without using the Beta-dyne that possibly irritated my eyes the last time.

In two weeks, I had a third treatment scheduled. It would follow a visit with my dry eye doctor.

For 30 minutes the nurse chatted while she massaged my eyelids. When she applied more pressure, it didn’t hurt – but it wasn’t that pleasant. Finally, she was done. I sat up slowly and opened my eyes.

Her stories of people gasping with clearer vision didn’t uplift me. I blinked and the residual gel made my eyes blurry. I knew it took time for that to clear.

I thanked that sweet nurse with a hug and promised I’d let her know later in the day how my eyes felt.

The afternoon wore on and I didn’t feel anything remarkable. In fact, my eyes felt slightly sore. I tried to push that thought aside. By evening there was no doubt; my eyes were terribly irritated.

The feeling was familiar – discouragement and spiraling depression. A remedy offered hope and relief. A failed remedy set me way back. The fallout of pain left me thinking that there was little else left to try.

Why couldn’t I have been one of those lucky patients who found relief?

That question was one I didn’t want to ask. But it kept shouting in my head.

I promised the nurse I would let her know how I was doing. I typed out a message and she sent me a reply to follow.

2016-05-26_09-15-39 2016-05-26_09-15-58

A setback won’t put me back where I started, although sometimes it feels that way.

Even though I feel knocked down, I’m not going to give up my hope. I’ve already traveled farther away from the pain of when this awful condition began. A setback won’t put me back where I started, although sometimes it feels that way.

Gel for Miboflow Closeup Gel

© 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.

#33 I WENT WITH THE THERMOFLO

The whole experience was filled with hope. I needed hope badly and couldn’t believe the timing.

Everything was harder when my eyes were bothering me. I was having one of those mornings where I felt so down. I wanted to be productive, but it was impossible because I couldn’t really open my eyes.

I was still scratching a few scabby hives and decided to use the steroid drop because I desperately wanted my eyes to feel better. I wasn’t really sure that those eye drops had caused my itching problem.

When my phone rang, I was surprised – it was a nurse who worked with my dry eye doctor. I had forgotten that at my last appointment, my doctor mentioned a trial study with a new machine. It was non invasive and free. I told her I was definitely interested.

The nurse explained that the test procedure involved three treatments over a period of one month. She wondered if I was available that day or the next. I couldn’t believe it; it was the perfect thing for me to do on a day where I felt miserable. I told her I was more than ready. In only a few hours I might find some relief. There was nothing better than having hope again.

I hung up the phone and the first thing I wanted to do was share about it on my dry eye support group site. Within a few minutes, there were a dozen messages of encouragement. I was so touched and felt excited because perhaps this might help others once I shared about it.

2016-05-19_21-06-24

I arrived promptly for my 11:30 a.m. appointment. The nurse ushered me in sweetly. I didn’t have to sign any papers or pay anything at all. I felt like a celebrity almost.

It was explained to me that I only needed to lie back and relax. My eyelids were going to be massaged with a tool that reached 108 degrees; the oil in my clogged meibomium glands would be softened and released. I closed my eyes; Beta-dyne was dabbed on first, followed by a thick gel. The machine looked like an electric toothbrush with space for my eyelashes.

IMG_1731 cropped closer IMG_1736 cropped closer

 

 

The nurse explained that the Beta-dyne did bother some of the other prior patients. It was used to counter any bacteria that might be released from the glands.

 

She said there were 14 patients in the study. Only one person reported that the treatment did nothing while the others found great improvement with dry eyes and even their vision.

 

The whole experience was filled with hope. I needed hope badly and couldn’t believe the timing. I asked the nurse if it were possible for someone to take a picture. I explained that my dry eye support group was eager to hear about this.

The nurse was more than willing. She gave permission for lots of pictures and suggested I could even scan the brochure she had for me.

Mibo Brochure 1 Miboflo brochure 3 panels

A timer went off after about 15 minutes. She switched to my other eye.

As she massaged my eyelids, she talked about many things related to dry eyes. I heard her mention the name of my cataract surgeon and felt myself flinch.

I was more than frustrated when I developed this condition after my surgery. I felt my surgeon was “done with me” and upset that he wasn’t more compassionate. But now, I heard that this surgeon suffered so much from Meibomium Gland Disease that he walked around the clinic with a microwaved potato wrapped in a paper towel over his eyes. That piece of information alone was very ironic for me.

It was time for me to sit up and blink. The room was blurry because of the gel. The nurse said that it would go away soon. She asked me how I felt. I didn’t know what to say – I wasn’t really sure. I wanted to say I felt fabulous, but it wasn’t the case. I felt a sting and mentioned it.

She said, “That’s probably from the Beta-dyne. Next time we don’t plan to use it. It bothered a lot of other patients but to be consistent in the study – I had to use it on you for the first treatment.”

For the rest of the day, I couldn’t believe how many wonderful comments were written on my dry eye post. I wrote back to everyone, but I had to be honest – I was a bit disappointed. My eyes were still bothering me.

However, I still had two more treatments – it was too soon to give up hope.

The next day, my eyes worsened. Now I had to consider that the treatment irritated them. It was very disappointing.

The nurse who performed the procedure sent me a message asking how I was doing. I was honest. She wrote back: “I am so sorry that you did not get relief. Thank you for not giving up. I hope that we have better luck at next week’s appointment.”

All of the messages from my support group helped me very much. I learned that another woman with dry eyes had an allergy problem with her eyelids similar to mine. She had discovered that her allergen was dust mites. I wondered if that could be my problem. It was definitely another avenue to investigate.

One member told me that she was pulling for me and wanted a link to this  blog. My dry eye blog was simply a place where I could vent about my eye problems. It was therapy for me to freely share and complain.

Later on she wrote this to me:

“Judy, I just read most of this at work! It’s beautiful! My eyes definitely got tears at times. I’m going to go light a candle for you tonight.”

If she only knew how many tears her words brought me.

IMG_1731 cropped Light a candle post© 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.

#32 WAS IT RASH TO TRY STEROIDS?

Anytime I didn’t feel well, my eyes were affected. But I stayed as positive as I could.

A week after my eyes were feeling better, I developed an outbreak of hives. I was itching and miserable. Anytime I didn’t feel well, my eyes were affected. But I stayed as positive as I could.

Gradually the itchy welts subsided. The Manuka honey eye drops named Optimel arrived and only a few drops irritated my eyes. I stopped after two days.

At this point, I offered the expensive Manuka drops to anyone interested in trying them in my dry eye support group. I also offered several boxes of artificial tears and eyelid wipes. I shipped them off to two different people and received effusive thank you messages. It felt good to help others by sharing something I wasn’t going to use. I didn’t accept any money for postage.

My eyes were still better doing less. I didn’t miss compresses or eyelid wipes. Sometimes I longed for an artificial tear to wet my eyes. But I knew that it wouldn’t help at all and would make my irritation worse.

The sample bottles with steroids were eventually all used up. The Alrex and Lotemax had little effect, unlike the Durezol. I was on a new path of doing nothing for my eyes. It wasn’t perfect, but far improved.

I was worried that my eye pressure might have increased. The soonest appointment for me to see my ophthalmologist was in 3 months. I decided to go see an optometrist. I’d be able to check my eye prescription and find out my eye pressure at the same time. Another idea I had, was to try soft contact lenses.

The optometrist was friendly and my eye pressure was not any higher. My eye prescription had changed again so I ordered two new pairs of glasses.

Adjusting to soft contact lenses was more challenging than I expected. I had worn hard lenses until my cataract surgery – for almost forty years.

The soft lenses weren’t painful, but putting them in and taking them out was stressful and required a lot of patience. The problem was the prescription didn’t work well for me. I couldn’t seem to adjust to powerful vision in the distance and blurriness up to five feet in front of me. The optometrist gave me many samples to try (I’m still trying.)

Three months later, I finally saw my regular dry eye doctor. I asked her for the one steroid drop that had helped me, Durezol. It was not available through my HMO, so she prescribed something else and said it was almost the same thing, Prednisolone Acetate.

After two days using the Prednisolone, my eyes didn’t feel better at all. I experienced tunnel vision. And then I broke out in a rash like I had three months earlier. Was it possible a steroid eye drop could cause this? It seemed so unlikely, but at the same time it was very coincidental.

Don't scratch

I looked into side effects for Prednisolone and didn’t see anything about a rash – it seemed pretty far-fetched, but tunnel vision turned out to be a possible side effect.

And Prednisolone had an irritating preservative in it, one that Durezol didn’t have. I called my doctor and she was willing to prescribe Durezol. I was happy until I was told it would cost $140 for that bottle. I let my doctor know the cost and she said I wouldn’t have to pay that thankfully – my HMO would cover it with an exemption.

I used it sparingly and decided to stop when I made the connection to having the rash. It took a few days for me to realize the coincidence.

It was so frustrating. I was scratching my welts and wishing I could use the Durezol to help my eyes feel better. I didn’t want to use it until the rash was gone. I was also eating too much. It helped me cope in many ways but depressed me even further.

I contacted my regular doctor and asked if he could order blood tests to see if anything was wrong with me. The tests all came back negative; my doctor told me everything was ok.

I sure didn’t feel okay and wondered what to do next.

© 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.

#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??!!

© 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.

 

 

 

 

 

#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.

#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

© 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

© 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.

 

#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.

© 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.