I am not doing well.
I wrote in a previous post detailing some things that were causing stress in my life. It was not an exhaustive list. My Friend Sandra knew I was having a bad time recently and, under the guise of coming to play with my cats, brought me a red velvet cake to cheer me up. And it worked for a while.
When I was eight (confirmed by mom today), I woke up one day to find pus had filled my right eye socket. My mother rushed me to the pediatrician’s office to find out what was wrong. The doctors and nurses carefully cleaned away the pus. When they reached my eye, the nurse had to peel open my eyelid. There was more pus caked on my eyeball. The process took nearly three hours.
After looking at my eye, I was sent home with some medicine. We were back at the doctor’s office the next day to repeat the process. I was sent to an ophthalmologist where I was diagnosed with the herpes simplex keratitis. It is an inflammation of the cornea, the clear dome that covers the front part of the eye. I have it on the inside and outside of my cornea.
The virus can never be eradicated from the body. It can go latent, but there will be sporadic outbreaks. It commonly only affects one eye and it can cause blindness. When I was diagnosed, I was told to prepare myself because it was likely I would be blind in my right eye by the time I was 20. Thankfully, that did not happened.
My Aunt Elaine made jokes about “How did you get that in your eye.” I didn’t understand the joke at the time, but it has always stuck with me. I have had to explain it to so many people because everyone only knows about genital herpes. Yes, they are related, but they are different.
Risk factors for reactivation include, sunlight, trauma, heat, stress, and menstruation. Let me tell you, that last one was no fun. Hitting puberty with this was terrible. I was sure every single person knew every single month for more than a year. Eventually, my body figured out menstruation was normal and I stopped having flare ups. However, I wore an eye patch over my eye for most of seventh grade due to the photophobia, or light sensitivity. It is not an irrational fear. Photophobia is an experience of discomfort or pain to the eyes due to light exposure or by presence of actual physical sensitivity of the eyes.
I wore sunglasses in school most of eighth grade because the fluorescent lights would trigger my eye. It was also a transition time from the eye patch to normal vision. We learned that one the hard way. I did not enjoy being the guinea pig in that experiment.
My PE teacher used to call me Joe Cool. I’m not sure she actually knew my name, but she never let the kids make fun of me, at least not when she was around.
Then, things calmed down. I went in for a checkup at the University of Nebraska Health Center my sophomore year in college. I was participating in a snowball fight in the dorms and I ran into a cement wall at full speed, knocking myself unconscious. I hit the wall just above my right eye, so my mom asked me to go get it checked out. None of the interns had seen this virus before, so I spent nearly two hours in the office while they took turns looking in my eye and asking questions.
While there is severe pain, blurred vision, tearing and redness in my eye each time this flares up, the extreme photophobia causes the most pain and has had long-lasting changes in how I see. I have spent most of my life with darkened glasses. It has only been in the last two to three years that I have worked to lighten the glasses a little bit to make me feel a bit more normal and not have to constantly answer why I have sunglasses on all the time.
I nearly lost my eye in 2005. Paul and I were living in Poughkeepsie, New York at the time. The pain started over the weekend. I thought it was from dust – I’m allergic to dust mites – after spending the weekend helping move stuff with my grandmother.
The photophobia hit while I was taking Paul to work. I tore off my glasses and covered my eye to try to keep out the light. But I drive a 5-speed, so I was constantly removing my hand. By the time I got home, I was seriously considering using a spoon to scoop out my eyeball.
I curled up on the couch in the fetal position. I covered my eye. And I began wailing. It was loud and uncontrollable, but I didn’t know how to stop the pain. My friend, Bas, was visiting from The Netherlands. He was still sleeping upstairs. My cries woke him up. He thought I had an argument with Paul, but quickly realized my wailing was the sound of pain.
“Do you know how to get to the hospital,” he asked. I nodded yes. He helped me to the car. The photophobia was so severe I was pulling my shirt over my face.
“Don’t look. Just tell me what street I need to turn on,” he said, as he reassuringly touched my shoulder.
He drove like a madman, as I would have, too, weaving in and out of the four lanes of traffic.
“Your car has a really short shift,” he commented. We discussed how my old Toyota SR-5 sports car didn’t have that. We decided that, since I now owned a Hyundai, it must be a Korean thing.
By the time we reached the hospital, Bas had calmed me down. The wails were gone, replaced by momentary whimpers whenever any kind of direct light beamed down upon me. Instead of sitting in the waiting room or the large open emergency room, the nurses led Bas and me to a room and turned off the lights.
A few minutes later, someone came in and put some drops in my eyes to numb the pain. The pain never did go away, but about 10 minutes later, I could open my eyes. The pain was bearable.
When I had first arrived, none of the machines could register my eye pressure. It should be under 21. Someone came in about 45 minutes later. They said the pressure was 78. A few minutes later, the doctor came in and left the door open just a crack. He conducted his examination by the light from the hallway coming through a five-inch crack.
It took 1.5 years, dozens of office visits, and 16 eye drops a day with varying medications to get my eye normal again.
During a flare-up, the photophobia feels worse than having a bright light pointed at my eye while thousands of pins are jabbed in my eye. Now imagine that every day for more than a year.
And I thought I was good again. I know severe stress can trigger the virus. I know I’ve been under a lot of stress the last five months. But I thought I had it under control.
On Thursday, February 15, 2018, I was experiencing some photophobia. There was searing pain whenever I went outside. I had to ignore it. There was the 50th anniversary of 911 two-part series I had to finish. There was also a big story I was assigned to cover for the Star-Herald. It took nearly six hours. By 4 p.m., I was exhausted. I thought I was just tired. I knew I was stressed. Since none of the other symptoms had appeared, I really hoped some rest would make it go away.
I woke up Friday to constant, searing pain. I know that feeling. When I walked into the bathroom to have a look, my eye was completely red. The blood vessels were enlarged and looked like crooked spiderwebs shooting out from the center of my eye. I’ve seen that before, too. I sighed deeply. I knew what was happening.
I called my optometrist and got in right away. Your eye pressure should be under 21. Mine was at 45. Not as high as in 2005. But I had forgotten how much this hurts.
Whenever a flare up occurs, it takes a while to set things right. I hope I fall within the “typically clears up in 10-14 days” scenario this time.
I have a followup appointment Monday afternoon. If things haven’t improved, I will have to see an ophthalmologist. I really hope I don’t have to go down that road.
I’m taking Istalol once a day for the high pressure, Zirgan ophthalmic gel, an antiviral drug five times a day to slow the growth of the virus and Acyclovir twice a day to slow the growth and spread the virus. Zirgan and Acyclovir are also used for genital herpes. No, I don’t enjoy having to go to the pharmacy to pick them up.
While trying to determine what times to take the Zirgan so it is spaced out evenly, my logical husband had just the answer.
“Think of it like the Muslims going to prayer,” he said. “Just look up what time they pray each day and put your drops in then.”
This website detects your location in the world and tells you when you should pray. That is, if I want to be that specific.
My editor asked if I needed to take a sabbatical from work or what else he could do to help me. I told him I didn’t think a sabbatical was necessary, but I will probably take frequent breaks from my computer desk and that he needs to know if I suddenly come up and say “I need a sick day tomorrow” that I need a day off, no questions asked.
On Saturday morning, I woke up to the gentle sounds of Cinders’ purring. I don’t know if she stayed all night, but she was there when I opened my eyes. Paul made me tea and crumpets for breakfast. Since the only other British thing he can make is homemade chips, I wonder what will be for lunch.
Right now, I have a constant aching all over the right side of my head. Photophobia has always been the worst part of this for me and it causes great pain. This time is no different. My house will likely remain dark for at least the next 48 hours.
If you don’t see me online much in the near future, computer screens make the photophobia worse. If you see me tearing up, I’m probably not crying. My damned eye is leaking. I probably won’t be as happy either. I will be trying to ignore the pain while I work. I will try to avoid any bright places for a while. You’re not going to see me outside of work either. Right now, the best place for me is inside, away from anything bright.
Whenever there is a flare up, the race is on to minimize damage and prevent scarring. And I’m running a race that I never wanted to be in, but is necessary to win. It’s a battle I can’t afford to lose.
NOTE: Please excuse any typos in this post. I have written most of it without looking at the computer screen.