FRUSTRATIONS NAVIGATING THE MEDICAL MAZE
12 Doctors and Still No Answers
My ongoing eye pain, series of treatments, and the implications on my life
My eye pain and visual distortions started with a bang.
I saw 12 doctors to get treatment for severe eye pain. I wanted a clear diagnosis. I wanted to know what caused the problems, but none of the ophthalmologists could agree on any of it. They offered conflicting theories, and no two reached the same conclusion. Some gave up and said it was idiopathic, a new word for me, meaning the reason for the illness was unknown.
After Dr. Woodall did the initial surgery, debriding my eyes and surgically scraping off the layers of the surfaces, I never saw her again. This was not because I didn’t want to or didn’t ask. When I tried to make a follow-up appointment, I was told that the resident, who incidentally looked fifteen, was managing my care and I would have to talk to him.
He didn’t want to see me, claiming that my eyes were fine, healed and there would be no point in meeting again because there was nothing else that needed to be done. I told him I was still having pain, discharge, and photosensitivity and could not even open my eyes. He remained unconvinced.
He told me there was nothing left to do medically, so I assumed my eyes would heal on their own, and that I just needed to be more patient. He didn’t prescribe me any pain medication.
Practical Needs
I needed help. I was at home alone, bedridden, and should have been supervised. The only family I had was hundreds of miles away, and I had exactly one friend who wasn’t even local. On weekends, my friend and husband-to-be, Pete, would visit and bring me prepared food. Other than that, I was on my own, unable to open my eyes without prying them open with my thumb and forefinger. They stuck together.
I was familiar enough with where my bathroom was that I could feel my way there, but my bedroom was in the basement, and the kitchen was upstairs. I was hungry. I had two flights of stairs, which I crawled up. That put me in the living room, which led to the kitchen. I was on the carpet, moving slowly. I moved in the direction I thought the kitchen was. I got lost. I felt furniture but couldn’t identify its orientation in the room.
I had no choice but to pull my swollen eyelids open, which caused searing pain, but at least I was able to stand up, walk to the kitchen, open the refrigerator, and take out some food, which I devoured.
Months Later
Four months went by, and my pain had not abated. I developed extreme photosensitivity. I couldn’t tolerate any amount of light. I needed all the rooms to be blackout dark. Pete covered the windows with bed sheets, taping them to the wall around the frames. I had thick curtains already, but there was a small amount of light that came through at the top, and even that was intolerable.
By this point, both I and Pete were calling the hospital regularly, trying to get through to anyone. We were informed that the resident had rotated out of the service, and I had not been assigned to another physician. We finally got through to someone who prescribed me oxycodone, which back then was offered with more frequency than it is now. It did nothing. They raised the dose, but still nothing. I knew this medication was only prescribed for the most severe pain, and I couldn’t understand why it wasn’t doing anything.
I called the hospital and was put on hold for an ungodly amount of time, but I eventually got through to someone. I wanted to be put in touch with the social work department because I was home alone and needed services.
I couldn’t get my various medications from the pharmacy because I couldn’t drive, which was going to be a challenge even if I could. I could have taken a taxi (Uber and Lyft didn’t yet offer services in my area), but that would have meant going out into the daylight which I couldn’t bear even with my eyes closed. The hospital informed me that because I had been discharged, I didn’t qualify for any of their ancillary services.
Hospital Indifference
I called CVS and asked if they could deliver my medication. No. I asked if they knew of any pharmacy I could transfer my prescriptions to that delivered. No. Then they either hung up on me or we were cut off. I’ll give them the benefit of the doubt and say we were cut off.
Pete helped me find a new ophthalmologist at The Eye Center. But the hospital didn’t want to send my medical records to them. I called and started yelling. I was desperate, so even though I had never told anyone I would sue them, I told whoever I was speaking to that I would take legal action if they didn’t fax my records right away. I apparently scared them enough that when I called the Eye Center the next day, they had received my records.
I had a constant sense of something being in my eyes, and it felt like a deep scratch every time I blinked. My new ophthalmologist, Dr. Glasscock, took a pair of tweezers, inserted them in my eyes, and pulled out filaments. He did this several times to both eyes, and the sensation lessened but didn’t go away. He saw me 2–3 times a week because the filaments kept forming, and he kept having to pull them out.
More Doctors
I saw Dr. Glasscock for months, but I was still in significant pain, still couldn’t tolerate light, and had to keep my eyes closed most of the time, although I was able to open wide enough to squint. When the pain was particularly agonizing, I called and asked to be seen right away.
My doctor wasn’t available, so they let me see a different ophthalmologist. She looked at my records, examined my eyes, and shook her head. She hesitated, then told me that my eyes weren’t going to improve unless I saw someone more well-versed than anyone at The Eye Center.
She gave me the name of an ophthalmologist and told me she would call to ask him to see me on an emergency basis. Great. Another doctor. At least this offered me some hope.
The new Dr. Glasscock examined my eyes and prescribed me something. He told me he couldn’t take on any new patients, but there was someone else at the practice who could. He transferred me to Dr. Taylor, who told me she needed to see me twice a week. After seeing her for months, she told me, “We don’t know why this is happening to your eyes.” She used the word “idiopathic,” explaining that “It means we’re all idiots. We don’t know why this is happening.” I was scared.
“No Cure”
I saw more and more doctors. One of them diagnosed me with Sjögren’s Syndrome, for which there was no cure. Another told me the problem was caused by having been on Accutane, but they didn’t rule out Sjögren’s. It went on and on. My insurance company was rejecting my claims, and I was having to pay thousands of dollars, draining my savings.
One of the doctors was interested in having me in an experimental research study, but she couldn’t guarantee that I wouldn’t be in the control group and receive no treatment. I was at the end of my rope.
I felt sorry for myself. I felt angry with myself for feeling sorry for myself. I felt stupid for having so much difficulty navigating the maze. I didn’t know who to blame, so I blamed myself.
Conclusions
After several years, I gave up on trying to find an answer, especially since my primary opthalmologist told me it wouldn’t go away and I would have to “learn to live with it.” She wasn’t being cruel. She was being realistic.
I have done just that. I have some “bad eye days” that are worse than others, but I have sort of made friends with the pain.
I don’t like the pain, but I don’t fight it anymore, and I do what I can to lessen it. A lot of times that means I lie down with my eyes closed. Sometimes I fall asleep. This means I’m not being productive in the typical sense of the word. But I am being productive even when I do “nothing.”
The product is self-care, being kinder to myself. I still get anxious and hard on myself when I don’t get household tasks done. But it doesn’t have to define who I am.
I’m not lazy even though I necessarily engage in some behaviors that, if I didn’t have the pain, might be categorized as such. The work of my days has just shifted. I am lucky enough to have the unconditional support from my husband. He is a good model for teaching me how to treat myself.
I have written another story about how my eye condition has affected my life. I link it here in case to give additional perspectives to interested readers who might be struggling with similar issues. Doctor, My Eyes: My Mystery Illness.
