A Personal Post
My wife is blind in her left eye.
She’s been that way since she was a little girl when she lost her sight due to an illness. The procedure to save the eye itself left the pupil misshapen. I don’t think you notice it unless you look close. Even then the difference is so slight most people just think she has really interesting eyes.
I still do and I know the truth.
About two years ago, she started having terrible headaches. The headaches were centered on her left eye. Eventually the eye began to hurt. We went to see a specialist in Bloomington. He examined her, ran a number of tests and discovered the pressure was off the charts. High enough that if it kept rising her eye would burst. The doctor prescribed a retinue of eye drops and referred us to another specialist in Indianapolis.
It was expensive. We didn’t have insurance. At the job I had, insurance was so cost prohibitive that I would have been working just to pay for it. I didn’t care about the money though. I just wanted my wife to be healthy.
Finally, after more visits and more tests and even more eye drops, her pressure finally came down. Along the way, we discovered why she had lost her sight in her left eye. Both her parents are dead, have been for some time, so we never knew the culprit. Turns out, her mother gave her an infection in the womb that eventually attacked her eye.
For some time now, she’s been okay. She sees the specialist in Bloomington several times a year to ensure the pressure doesn’t get out of hand. I have another job now, a better job, one with insurance I can actually afford. The cost is not longer a burden.
Everything was fine until a month ago.
Her right eye, her good eye, the one with sight, began to hurt. Then it was headaches and feeling dizzy a lot. Finally, came the floaters—little swirling motes of black that blurred her vision.
The Bloomington doctor got her in quick, ran a host of tests and couldn’t find a cause.
Back to the specialist in Indy. He examined her good eye and he couldn’t find anything wrong. He couldn’t discern a single reason for this eye to sudden start troubling her. He suspected a return of the original infection, but prescribed a whole range of new tests for her to have done at the hospital.
I’d never heard of most of them. Apparently, the hospital hadn’t either. They had to look them up before beginning the blood work and running the scans.
The worst part was the waiting. For some things, I have the patience of Job. I shit you not. I can wait out almost anything with a calmness that’s often alarming. But this? Waiting on tests results to come back? This was a fucking nightmare.
Last week, my wife called me in tears. The doctor had called. The results had come back. She tested positive for some form of Vasculitis. Now that he knew what to look for, the specialist scheduled a follow-up appointment for this week.
On Tuesday, I worked a half-day and drove her up to Indy. They took her eye pressure and injected her with a dye so they could look at the entire eyescape in detail. Thankfully, her eye appears to be healing. He couldn’t see any lasting damage or anything that would require surgery. She’s to continue her current prescriptions for the next 6 weeks and then follow-up with her doctor here in town.
The bad news is that the most likely culprit is Behcet’s disease. Sometimes referred to as “The Silk Road Disease” due to its prevalence in areas surrounding the ancient trade routes and its rarity here in the United States, it carries a whole host of terrible symptoms she has not experienced. We won't know if she will until she’s able to see the rheumatologist.
My wife has been devastated. She’s frightened and scared. She’s afraid of becoming very sick. She’s afraid of hurting. She’s afraid of dying.
Last night she was mad at me. She didn’t think I was taking this seriously. She didn’t think I was worried. She didn’t think I was scared.
But I am.
She’s been that way since she was a little girl when she lost her sight due to an illness. The procedure to save the eye itself left the pupil misshapen. I don’t think you notice it unless you look close. Even then the difference is so slight most people just think she has really interesting eyes.
I still do and I know the truth.
About two years ago, she started having terrible headaches. The headaches were centered on her left eye. Eventually the eye began to hurt. We went to see a specialist in Bloomington. He examined her, ran a number of tests and discovered the pressure was off the charts. High enough that if it kept rising her eye would burst. The doctor prescribed a retinue of eye drops and referred us to another specialist in Indianapolis.
It was expensive. We didn’t have insurance. At the job I had, insurance was so cost prohibitive that I would have been working just to pay for it. I didn’t care about the money though. I just wanted my wife to be healthy.
Finally, after more visits and more tests and even more eye drops, her pressure finally came down. Along the way, we discovered why she had lost her sight in her left eye. Both her parents are dead, have been for some time, so we never knew the culprit. Turns out, her mother gave her an infection in the womb that eventually attacked her eye.
For some time now, she’s been okay. She sees the specialist in Bloomington several times a year to ensure the pressure doesn’t get out of hand. I have another job now, a better job, one with insurance I can actually afford. The cost is not longer a burden.
Everything was fine until a month ago.
Her right eye, her good eye, the one with sight, began to hurt. Then it was headaches and feeling dizzy a lot. Finally, came the floaters—little swirling motes of black that blurred her vision.
The Bloomington doctor got her in quick, ran a host of tests and couldn’t find a cause.
Back to the specialist in Indy. He examined her good eye and he couldn’t find anything wrong. He couldn’t discern a single reason for this eye to sudden start troubling her. He suspected a return of the original infection, but prescribed a whole range of new tests for her to have done at the hospital.
I’d never heard of most of them. Apparently, the hospital hadn’t either. They had to look them up before beginning the blood work and running the scans.
The worst part was the waiting. For some things, I have the patience of Job. I shit you not. I can wait out almost anything with a calmness that’s often alarming. But this? Waiting on tests results to come back? This was a fucking nightmare.
Last week, my wife called me in tears. The doctor had called. The results had come back. She tested positive for some form of Vasculitis. Now that he knew what to look for, the specialist scheduled a follow-up appointment for this week.
On Tuesday, I worked a half-day and drove her up to Indy. They took her eye pressure and injected her with a dye so they could look at the entire eyescape in detail. Thankfully, her eye appears to be healing. He couldn’t see any lasting damage or anything that would require surgery. She’s to continue her current prescriptions for the next 6 weeks and then follow-up with her doctor here in town.
The bad news is that the most likely culprit is Behcet’s disease. Sometimes referred to as “The Silk Road Disease” due to its prevalence in areas surrounding the ancient trade routes and its rarity here in the United States, it carries a whole host of terrible symptoms she has not experienced. We won't know if she will until she’s able to see the rheumatologist.
My wife has been devastated. She’s frightened and scared. She’s afraid of becoming very sick. She’s afraid of hurting. She’s afraid of dying.
Last night she was mad at me. She didn’t think I was taking this seriously. She didn’t think I was worried. She didn’t think I was scared.
But I am.
