#19 I LET GO OF FEAR

Originally posted on April 11th, 2015:

Two weeks ago, I visited the state of Oregon. While driving along the beautiful coast, my son and I stopped at Yaquina Head Park and toured a remarkable lighthouse.

At the end of an educational lecture, we were able to climb a tight stairway inside that led to the top of the lighthouse. On our way down, my son stopped to take a picture of the spiral staircase. I thought his picture eerily resembled an eyeball! (You can see his shoes at the top.)

I snapped this while I was waiting.

The day after I returned from my vacation, I had an appointment with a top eye specialist. Before seeing the doctor, I was given a few tests. A technician manually checked my field of vision; it was tiring for me to concentrate and look for tiny flashing lights. Afterwards, she drew pictures from her results to map my “blind spots.”

My appointment did not yield any new information to treat my dry eyes, unfortunately.

The specialist recommended that I try plugs in my tear ducts again. Plugs never helped, and I still had two that were inserted years ago.

This ophthalmologist then told me that my dry eyes were a result of poor tear film. I asked him if I also had Blepharitis (eyelid irritation), and he said that was secondary, a result of not having enough lubrication.

My first big surprise was to find out that I needed new glasses! I was never informed after cataract surgery that my vision could change again three years later.

At first, I was embarrassed to think that perhaps some of my fogginess was because my glasses needed to be changed. But I paid a lot of money for this appointment, so I was glad that I was given such a thorough eye exam.

But I wasn’t expecting to hear the more shocking news that followed.

He told me that the pressure in my right eye was very high and there were visible indications of glaucoma damage. He gently told me to get an appointment at my HMO with a glaucoma specialist – not just a regular ophthalmologist. And he told me not to wait.

I left his office and sat in my car crying. I waited until I felt well enough to drive. When I came home, I crawled into bed. I was devastated.

I didn’t really want to share my upsetting news with anyone, but then I received a call from my friend who had recommended this specialist.

I told her tearfully, “You know, you probably saved my vision – I don’t know how to thank you!”

My friend was very comforting. She acknowledged that I’ve had a lot of challenges to go through since my divorce and my parents’ deaths. I was very grateful for her.

It was almost 4:00 pm and I decided to call my HMO to schedule an appointment. The sooner I got that appointment, the better. It was a Friday afternoon before Easter weekend, so I didn’t expect much.

The lady on the phone said, “There aren’t any ophthalmologists working next week; they are all gone for Spring break.” I thought she was kidding when she said Pediatrics would be covering that department.

I told her I was very concerned about my eye pressure and wanted an appointment with a Glaucoma specialist. She said, “You will not be allowed to see a Glaucoma specialist. Only patients who are not responding to conventional treatments are allowed to see one. Any of our eye doctors can treat you.”

I said, “Well, what if this gets worse before I see a doctor? I don’t want to have my eyes permanently damaged!”

Then she asked me, “Are you in pain?”

I answered, “I’m always in pain. I have dry eyes.”

Her reply was laughable. She retorted, “Well, honey, just put in artificial tears until your appointment.”

I took a deep breath. There wasn’t enough fire in me for steam to come out of my ears when I heard that one.

But sometimes, God can appear in moments that seem like coincidences.

Suddenly she said, “Oh! I see that there is an appointment available and it’s only in a week and a half. It just so happens that it is with our only Glaucoma specialist – so you are very lucky.”

I marked down the appointment for April 16^th.

My eyes were still dilated and the light outside was painful even with my dark glasses on.

I was overwhelmed trying to grasp the things the eye specialist told me. My head was spinning with a zillion questions: Did he say I had Glaucoma for sure? Was the damage he saw permanent? If my next appointment was in 13 days, could my eyes get worse? Was I was going blind? How would I adapt and manage that?

I was spiraling down into depression. It was too much!

Two weeks later, I saw a glaucoma specialist. She ordered a battery of tests and then sent me a message. She completely disagreed with the first doctor and said she saw no evidence of glaucoma. Her recommendation was that I come back in a year to have my eye pressure checked.

I let the outside specialist know what my HMO eye doctor said.

He responded with this, “I am pleased your pressure was lower and symmetric on that day. Often there is a delay in diagnosis and treatment of glaucoma due to fluctuations in pressure, just as hypertension may not be diagnosed on a day when the blood pressure is normal. I would recommend that you be evaluated at least every 4 months, not just with pressure checks, but also with quantitative perimetry and ocular coherence tomography for measurement of retinal nerve fiber layer thickness. Ultimately, if you do have glaucoma, one will see a progressive deterioration in those studies.”

I advocated for myself and made sure that my HMO would follow this outside specialist’s recommendation by thoroughly checking my optic nerve in 4 months. As I result, I have an appointment scheduled in July.

I love puns, so I’ll start with one here.

All of this was a real “eye opener.” I was so down when I went to see the outside specialist. I wasn’t expecting worse news about my eyes and couldn’t handle hearing I had another eye disease.

But then I realized that worry and anxiety didn’t serve me in any way.

One benefit from that appointment was that I had new glasses, which helped me see more clearly. As a result, I felt a lot better.

I went from total panic, to complete gratefulness. I was able to do so many things with my eyes. I relied on to drive, illustrate, play tennis and edit music. 

I decided I could accept my eye pain and somehow find a way to live with it.

These lyrics from my original song “Clear” carry so many meanings for me!

© 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.

#18 I NEVER WANTED TO FLY ALONE

I am excited share many beautiful photos on my blog from my trip last week to Oregon.

Originally posted on April 3rd 2015:

I was determined to overcome my eye condition. Planning a trip seemed like a way to prove to myself that I was still able to enjoy life. I decided to go to Oregon; it would be an opportunity for me to meet the wonderful art directors I worked with. For the last three years I had received many terrific assignments from the Tillamook Cheese Company and their art agencies were located in Portland.

My 18-year-old son asked if he could join me and it sounded like a great idea. My post title is the first line from my song “You Are My Wings.” I recently sang a vocal for the new arrangement of that song, so those words came into my mind. Yes, I was glad I wasn’t flying alone!

Our flight left late at night. My son took the window seat and was excitedly snapping pictures after take off. Both of us agreed the city looked like glitter below us.

As I continue this post, I am going to intersperse comments from people from a dry eye support group I belong to on Facebook. Their words will be in different colors and represent many different people. My own words to the forum will be in black bold. The post began with one member voicing her worries about taking a trip with dry eye disease.

Since I don’t know anyone personally who has dry eye like I do, I’ll cry to you guys about it! I’m going on a trip with friends later this month. Normally it would be a fun trip and I’d be excited about it, but now that I have this dry eye thing I’m dreading it. This condition, which sounds like a mild inconvenience to people who don’t have it, is really having a big negative impact on my life. I know there are much worse things. I guess this is how it’s going to be from now on and I’ll have to adjust, but right now I’m still shocked at how debilitating it can be!!

I completely understand. I’ve felt reluctant to take any trips away from home because of my dry eye condition. I like to “feel safe” and be home when the pain overwhelms me. It is one of the sadder realizations I’ve come to by having this horrible condition.

Our flight would arrive in Portland near midnight. My eyes were constantly bothering me in the airport; once my son and I were on the plane I closed them. My son was so excited and I was very happy he was with me.

I decided to listen to my music for a little while, but then I became very emotional and tears spilled from my eyes. It was embarrassing and I wasn’t sure if I was crying from joy or sadness. But I did notice that my eyes felt better after releasing those tears.

It’s a stunner, isn’t it? People have no conception of the life impact unless they’ve experienced it. The adjustment process is not easy but you will get there! Sometimes the mental challenge is as big as the physical one… that gradual shift from feeling defeated and limited to grappling and taking control, embracing the tools and strategies to make it through.

Your words echo mine exactly…the part about others not getting it really rings true.

The worst part is other people’s complete lack of understanding! If someone asks what’s wrong and I answer that I have dry eyes, they look at me like I’m stupid and say, “Why don’t you just put drops in?” I SO feel your pain
!

Our plane landed and my eyes hurt; I poured eye drops into them, hoping they would calm down. The fogginess and irritation were driving me crazy. I followed my son through the airport and prepared myself to drive a rental car.

During the plane ride, I kept digging through my purse, hoping I’d find an important piece of paper. It contained the gate code and room number where we would be staying.

Before we boarded the plane, I called my older son. He looked in my desk drawer and didn’t find it there either. I wondered how it had disappeared.

My youngest son squeezed my hand and said, “Mom, stop worrying about finding that paper. We’ll figure out a way in. Why don’t you just look at this as an adventure?”

With those words, I grinned. My son probably learned that from me!

I had an airport TSA guy question me as to why I had so many eye drops. After all, I was “just going to New York.” I fear running out of drops in the middle of a trip, so I carry a lot. But other than being prepared, don’t let it change your life too much. The people close to me understand now that I am capable of conversations with my eyes closed. Keep getting out there and enjoying life.

That’s why I love this group, full of people that understand exactly how crappy this condition is.

You must know that there are others like me who share your pain, I seldom go anywhere and don’t want to think about traveling for vacation.

We safely reached our hotel and I was collapsed in bed. I was amazed that everything had gone smoothly. My son was right; it was an adventure.

I also realized that taking this trip with my son was joyful and that was the reason I had cried earlier.

I completely understand what you are going through. After dealing with eye problems for a year I finally went to the doctor; Severe Chronic Dry Eye was the diagnosis. So far, I haven’t found much relief, but being in this group has helped. You don’t really understand what it is until you have it, and then you can sympathize with anyone else who has it.

It might take a long time to feel better but it will happen. Don’t get frustrated. I know we have all thought that we’ll feel like this forever but things do change. And lately there have been a handful of new drugs in clinical trials that will hopefully be put on the market.

I used to not go anywhere, but then I started to face my fears about socializing with others. I think it’s because you never know how your eyes will behave and stress doesn’t help. Usually, I just say to myself nobody’s perfect. I just tell people straight out that I have eye problems. It has taken me ages to get to this point and I have a lot of anxiety.

I understand completely. This condition has completely changed my life. I’ve had to quit my job. I am doing some volunteer work now, but some days I feel so lost and alone. I miss the capable person I used to be.

Just get out; don’t let it stop you – don’t let it win. I am doing my best to travel and enjoying life with my husband at my side to hold my hand when I have to close my eyes because of the pain.

I’ve struggled a lot with the horrible dry eye cycle of sinking into hopeless depression – and having my eyes feel even worse when I’ve been discouraged. But I can say with complete honesty that I have good days where I accept this condition when it’s not torturing me. I miss the feeling of “normal” and probably always will. I guess this is the “new normal” and I’m grateful when it’s not like it was at the beginning! I cannot let go of hope and will continue to search for anything that brings relief.

Even though I couldn’t escape from my foggy vision or eye pain, I thoroughly enjoyed exploring Portland, Oregon. I especially loved taking pictures at a beautiful Japanese garden. The koi were magnificent.

On every outing my son kept asking me, “Mom, how are your eyes?” I appreciated his caring but felt sad because I knew he was constantly worrying about me.

I think what’s hardest is not being able to depend on your eyes. I am a visual person. The discomfort of the dry eyes changed my life so drastically. I used to be a fairly social person. Now I feel like a hermit. It takes such an effort to get myself out the door many days. I feel so lonely. And it seems that my friends and family have moved on without me. I’m so grateful for this support group. It keeps me going.

Your words made me cry – so true. I am also very isolated and get sad when I see pictures of myself with bright open eyes. I can see my eye pain in pictures now. But other people don’t really see or understand that pain. My eyes are foggy and uncomfortable – but I’m not impaired like other people are with this disease because I can drive and work. Still, the isolation comes from not feeling great about being out and about – traveling, going shopping etc. When my eyes hurt, all I want to do is retreat.

My son and I explored different beaches. He especially enjoyed a tour of the Yaquina Head lighthouse. Before heading back to Portland, we drove to Tillamook Cheese Factory. We were given royal treatment there and it was a most wonderful day.

We all know this disease is horrible to the point that quality of life is adversely affected, even the ability to work. But worst of all, is the chronic pain, aching, stinging, burning that no one can understand. And the depression and anxiety that ensues because of the isolation and wearing down from constant pain.

Your stories have made me speechless. This is my life as well. I have to pick and choose why I leave the house because I know it could very likely trigger a flare up. It has greatly impacted my income and social life but, most of all, the uncertainty of the next “flare up” and the isolation has caused me anxiety and depression. It’s priceless to connect with others who understand this.

I think you summed it. Our eye issues cause detachment from life – and I miss the connections I once had. But ironically, I have learned so much from this condition about myself. I use this word a lot – insight. I’ve searched deep within to discover empathy and focus on small blessing to keep myself going. This is a precious connection for me to know that others understand the pain that is such a burden dealing with every moment of my day!

After touring the Tillamook Cheese Factory, I drove back to Portland through the Tillamook Forest. It was raining and my eyes were very concentrated on the road. After four hours we found a hotel near the airport that worked out well for us.

On the following day I planned to visit two different art agencies that I worked with on the Tillamook account. My son told me to go on my own because he wanted to relax in the hotel all day. I was slightly disappointed at first. But I didn’t say anything; the last thing I wanted to do was drag him along.

Being alone made me anxious because the streets of Portland were very complicated. It was going to rain and even though I had GPS, with my eye condition it was tough. But then I realized that I wouldn’t have my son barking commands at me. I could even sing in the car if I wanted to.

I took a deep breath and left myself plenty of time to get there. Everything worked out fine; I found the two agencies and even managed to stay dry somehow!

We went home the next day and I was proud that I had been able to travel despite my eye condition. The day after my return, I had an appointment with a top eye specialist and was hopeful that he might be able to help me.

It has been very hard living this way. I have definitely lowered my expectations about being “joyful.” I only want to live my life without constant pain.

During this trip, I ate far too much. I knew it was to numb myself and that it was not good for me. My awareness of that made it even worse.

But celebrating my courage is important to me. I continue to hold onto hope even though sometimes it feels like I’m losing my grip.

Seeing the beautiful pictures brings my smile back. And of course, knowing that my son will always have wonderful memories of our time together is the best part of all.

© 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.