#14 MY JOURNEY IN SIGHT

Originally Posted on September 12^TH, 2014:

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

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

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

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

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

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

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

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

I was open to it.

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

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

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

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

And her mentioning God really touched me.

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

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

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

Judi

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

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

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

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

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

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

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

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

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

The experience was quite spiritual for me.

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

These are lyrics from my song “Wonder Why.” I recently finished the vocal and guitar additions for my song.

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

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

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

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

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

How is that possible?

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

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

#13 MY JOURNEY IN SIGHT

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

This was originally posted on September 9th, 2014:

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

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

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

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

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

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

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

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

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

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

Unfortunately, everything changed the next day.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Now I felt embarrassed for insisting upon this appointment.

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

And my butterfly of hope was smashed to the ground.

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

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

To be continued . . .

© 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.