“There was always hope . . .”
When I think about how many eye specialists I’ve seen, my head spins.
I have two conditions: Dirty vision due to posterior vitreous detachment and dry eye syndrome.
Unfortunately, my dry eye condition is the one that has really made me miserable.
I keep hoping I’ll find a way to alleviate my pain. According to the last cornea specialist I saw, it worsened and became a chronic problem because of hormonal changes related to my age (I’m 54). But primarily, it was brought on by cataract surgery.
Still, I can’t help but wonder about an emotional component. I know the body can exhibit things that our mind does not allow.
When my son had violent meltdowns, I developed severe rashes on my elbows that were constantly bleeding. During one of my mother’s early hospitalizations, I was afflicted with severe stomach pain. I even remember when it began – it was triggered by the smells in the rehab facility where she was. I ran to the bathroom and my horrible nightmare turned into microscopic colitis.
Those awful ailments only added to my misery because they lasted for several years and made everything I did harder.
I am extremely grateful that those conditions eventually faded away.
My eyesight problems remind me of my true weakness. I survived my empty marriage by ignoring the things that upset me – I looked the other way.
But where do I look now? Not only can’t I escape fog and dirty vision, I’m in pain and it’s too much.
I was disappointed after paying $500 for an opinion from a doctor at the world-famous Jules Stein Eye Institute. He spent 10 minutes with me and an associate examined my eyes. I still have not received a report from him and it’s been a month. He called me the next day to ask me why I wanted it, and I found his attitude annoying. He said he would not put anything in his report that indicated I deserved reimbursement because it caused problems for him in the past.
My bedtime ritual has become fairly time-consuming. Despite doing all the things I’ve listed below, my eyes still burn and have sensations. I have difficulty concentrating and often close my eyes when I walk outdoors. I bump into things a lot!
Judy’s Bedtime Eye Ritual:
Wipe eyelids with special eyelid cloth and cleaner
Put in Restasis eye drops
Start humidifier – do not slip on the wet floor
Put in eye gel drops
Warm up hot compress in the microwave
Put on iPod and relax with compress over my eyes
(The last step is the one I like best)
Twice now, I’ve seen an ophthalmologist who is a cornea specialist through my HMO.
At our last appointment, I let him know that I was following a regimen of all his suggestions. This doctor said sweetly, “I’m sorry, but there’s nothing else left that could help your condition. It’s incurable.”
So I reminded him about something I knew about – plugs in my tear ducts. Twenty years ago when I wore hard contact lenses, I had two inserted. They stimulated more tear production and helped. Only one of them remained.
He said, “Sure, I’ll put more in for you.” That was when I learned that there were four, not two places for those plugs.
I would have two more inserted that would give me three plugs. However, the upper lid tear ducts were much more difficult to have the plugs put into.
It was very painful as he pulled on my upper eyelid and pressed down. I tried to remain steady as I felt the sting of his tweezers. It took almost fifteen minutes and my eyes were dripping. There was no numbing for this procedure and I used every technique I could think of to stay calm and still.
When he was done he said, “It’s likely that they will fall out, but if you think they helped then I’ll cauterize the surrounding tissue to make them stay in permanently. Let me know.”
As I left, I wondered when I would get relief since he told me to return in six months.
I’ve had the same HMO since I was born. Although I’m ready to leave it, I do love my primary doctor. Even though I was not given “permission” to see an outside specialist for another opinion (meaning my HMO would reimburse me), my doctor really did try to advocate for me.
His last message to me was, “I have another patient who was given the run-around. I sent her to a colleague of mine that I went to med school with. She’s a retina specialist and might be able to help you also.”
I told him I was willing, and a referral was sent. It helped when he mentioned another patient was given “the run-around.” I wasn’t alone with my problems!
I sure didn’t hold out much hope for this eye specialist. I was so tired of having my eyes dilated.
The appointment came up quickly and I prepared myself to hear the same speech of, “Sorry, but there’s little that can be done for dry eyes and PVD (posterior vitreous detachment).”
As I sat in the waiting room, I heard my cataract surgeon’s voice nearby. I put my head down and hoped he wouldn’t recognize me. He was the last person I wanted to see even though many doctors have told me he did an excellent job with my implants.
My name was called and I went into the examining room. Immediately, I liked this doctor. She was energetic, young and sharp.
I mentioned my primary doctor’s name. Suddenly she became bubbly and used his first name while recounting memories from when they were both in medical school.
I noticed she was confident, but not arrogant. She seemed to really want to help as she sat down next to me. When she asked me to describe my problems, I didn’t know where to start.
My voice did not reveal my emotional turmoil at first. But because she was so compassionate, I felt as though I could allow myself to vent all the frustration I had over my condition.
Tears began to spill onto my shirt, which was such an irony for someone like me suffering from dry eye syndrome.
She handed me a tissue and said, “You know, I consider dry eye syndrome to be a disease. It is chronic and affects your ability to function. It’s not only hormonal. The fact that you wore hard contact lenses for many years is another factor – that created scar tissue. But even though I can’t treat your dry eye condition, I have another cornea doctor that I want you to see. There are still things you haven’t tried. Have you heard of serum eye drops that are made from your own blood? It can be a miracle. Another idea would be to create a moisture chamber for your eyes by wearing goggles at night.”
I listened to her rattle off more ideas to add to my other rituals. I didn’t expect much from this appointment, but suddenly I had a doctor who really seemed to care.
Then she said, “Okay, let’s take a look. I’m going to examine you now.”
In the darkness, I drifted off in my mind to avoid the pain. If my retinas were still intact, I was always grateful. Thankfully, they were this time, too.
She said softly, “I cannot imagine how you can see with the dense amount of junk in your gel. I can see it! There are ghost blood cells and enormous floaters. It’s like a curtain of spider webs.”
I was amazed to hear her words. That was exactly the way I had described my vision.
She was enthused when she said, “I can clean it all out for you. It would take just ten minutes. It’s up to you whenever you’re ready!”
“Is that considered a Vitrectomy?” I asked.
She nodded, indicating it was. The way she described it, it didn’t seem nearly as radical and dangerous as I thought it was. Suddenly it sounded tantalizing.
For another half an hour, she explained more about the procedure to me. She said she didn’t want to appear overconfident, but had never experienced a bad result. “If a doctor experiences a bad result, it can leave them fearful. I’m not on the opposite side telling you there aren’t risks. The reason for my success is that I choose my patients carefully. You are actually a perfect candidate. Yes, there are risks and with this procedure, and your risk of a detachment is slightly increased. But you are at risk for a retinal detachment even without doing anything at all!”
She mentioned that she did not do the surgery on anyone who did not have lens implants. One risk of the procedure was developing cataracts.
“You already have had cataracts, and that is another reason I could do this.”
Then she added, “I attended a workshop recently and the same doctor you just saw from the Jules Stein Eye Institute was there!”
She shared more about that workshop.
“The purpose of that workshop was how people who suffer with your problem have their life deeply affected. You are an artist and I can see how much you are aware of detail. This is all about your quality of life and this procedure could make a huge difference for someone like you.”
I left that appointment with a surgical packet and was given an appointment with a new cornea doctor to help me with my dry eye syndrome.
I drove home with my eyes half-closed. The pain was unbearable. But my heart was filled with hope. I wasn’t going to jump into having a Vitrectomy, for sure.
Before I would consider surgery, I first needed to get my dry eye condition under control.
I had a lot to think about. The specialist I had paid $500 to see made me promise not to touch my eyes. He said that he had many patients who had lost their eyesight and wished they had known that ahead of time.
This new doctor seemed terrific. But I needed to really think through everything. That wasn’t easy to do when I felt desperate about my condition.
But now I had some hope.
And hope was everything for me.
© Judy Unger and http://www.myjourneysinsight.com 2014. 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.
Judy my heart goes out to you — I had two years of hell after my cateract surgery — nothing compared to yours, and I have another friend going through this as I write this. I was fortunate that I found a competent doctor who was able to do laser surgery on my right eye and I could suddenly see quite well — not perfect by any means, but acceptable compared to the hell I went through. Your situation is much more serious. I will be thinking of you as you go through this process and hope to hear that things get better for you!!
Thank you so much for your comment, Becky. I always remind myself that it could be worse – but now I’m stuck. I’ll get through it and I’m sure glad to hear that you are on the other side. I was very nearsighted all my life. It led me to beautiful artwork, but lots of eye problems later in my life. You were right about how growing old isn’t for sissies!
Thanks for the quick reply, Judy — my heart and thoughts are with you. You are often on my mind!!
Oh how wonderful that there is some hope for your eyes – my heart goes out to my, dear Judy! Please also know how beautiful the musical arrangements are. Love Julie
I have got to mail you a CD with the new stuff soon. What an improvement I’ve made! It’s great to share with you and I’m glad your computer has audio now. Hope you heal up also. I think we both need to have a vacation someday. 🙂
No need to mail to me – my audio is working. Weird thing about first little bit of your first arrangement is that Ming is writing a song that begins almost in the same way – gave me a bit of a shock! Love you
Tell him never to grow up and stop playing his guitar. I gave it up for over 30 years and how I wish I had that music when I was living with noise and chaos. That’s great about his song. There are no coincidences.
I’ll tell him!
So sorry that your eyes give such pain, but sounds the new Dr may be of some great help…I pray so for your beauty is in your art and you need all facilities working at peak. I love the music and have failed to mention the cd’s you sent me…BEAUTIFUL! is such a small word to describe the emotional reaction I had listening. Your first cd I have listened repeatedly. God bless and hugs Judy.
Len, it’s a message like yours that keeps me going. Thank you so much. You cannot imagine how much that touches my heart. I will find a way through this and it’s such an analogy to grief. It’s something difficult that you just hope will get better someday. Hope is very important. I think of you, too, and wish Klysta was with you now.
I love this doctor you saw. Why can’t more doctors be like that.