Continuation of my series, Losing Well. Part 1 can be found here.
December 2015
The rest of 2004 was spent getting my new house in order. I started going back to shows. I stopped writing a journal so I don’t have too much of my feelings from this time period. I threw myself into work. The long hours were paying off as I was getting recognition for my project management skills.
May 2005
Off to Phoenix. Kate’s going to join me and we’re going to drive up the painted desert.
9 September 2005
My battle with RP marches onward. I just got back from Johns Hopkins. I go there every two years to baseline my remaining vision. This time didn't go so well. It showed that I have lost 50 percent of my vision in the past four years - not that I had all that much four years ago. Most of what I lost was islands notremaining central core.
I’ve been sitting on my hands for a while. It’s easy for me to forget that I even have a problem. That’s because RP challenges my sense of self and I’m in denial.
When I act blind people get upset when I prove I can see. When I pretend I’m sighted, I end up getting hurt - you should see the bruises on my legs. So in many ways it’s easier to live down to people's expectations than to challenge them with the half sighted world. Educating the public gets tiresome and it was never a position I wanted to be in. I need to start being who I am. Contradictions and all.
December 2015
2006 started out rough. I had cataract surgery in my left eye. I started to lose the ability to read normal print. This caused me to sink further into depression. Most people didn’t read books and now I was going to forced to quit them. It felt very unfair and frustrating.
February, 2006
Had cataract surgery in my left eye.Now I have to use bifocals to read. It’s a tough change. Getting lots of headaches.
24 March 2006
Went to a coffee house with friends. On the way out I got hit up by a cute young couple with a “Can we pray for your eyes?” The cane does draw attention.
“Why?” I asked in surprise.
"So God can heal your eyes,” the guy replied.
I was confused.“It’s a genetic eye disease."
“So?” The girl replied. “Let’s give it a shot.”
I let go of the girl’s hand. “I really do appreciate your concern, but no thanks.”
“You don’t want us to pray for you?” the girl asked. I could hear her confusion.
“No,” I replied. They left with the odd tension of the unexpectedly rejected. People can't just accept me for who I am.
Part 14 can be found here.
Showing posts with label cataract surgery. Show all posts
Showing posts with label cataract surgery. Show all posts
Monday, December 28, 2015
Thursday, April 23, 2015
Visual History
The history of my visual problems is long and complicated. Here's the brief version.
Timeline
When I was 3 I was diagnosed with amblyopia. I was right handed but left eye dominate (my strong eye). So my doctors surgically straightened my "lazy" right eye and patched my left eye. The hope was that they could equalize the strength of my eyes. When they pulled the patch off, my left eye had turned out. The surgery failed. They attempted once more, this time straightening my left eye and patching the right. After the surgery, my right eye turn back out. A third surgery was not attempted.
By age 5 I was wearing glasses to school. I couldn't see the board well and I struggled. It took me until after second grade to learn how to read.
By age 7 I realized I couldn't see well at night. I was on the swim team and I did great in practice but chocked during meets because we competed outside at night in poor lighting. This was my first symptom of Retenitis pigmentosa.
Age 13 I got hit by a tennis ball in my open left eye causing scare tissue. I'd lost the ball in the air, unable to track it in my visual field.
In my 20's I got into several car wrecks. These were caused by people cutting me off. I was instant Karma. These wrecks weren't my fault legally. But after a series of incidents I took myself to the eye doctor. When I was 25, I was diagnosed with RP. My optometrist didn't know much about it After a few months of research and testing, he decided I was legally blind and shouldn't drive anymore. I hung up my keys for good. A couple of months after stopping driving I starting Orientation and Mobility training - white cane training.
A few months before my 26th birthday I made my way to Johns Hopkins to meet their retina specialists. Johns Hopkins told me that my amblyopia surgery had failed because my brain was forcing my eyes out of sync to get a wider field of vision. I had an ERG on my eye, the only official way to prove RP. The doctors were amazed I'd made it so long in life without being diagnosed. They said that was an indictment of the entire field of optometry. Johns Hopkins advised me to get cataract surgery.
At 27 I had my first cataract surgery. I had the subcapsular "RP" cataract. It was tiny but happened to sit right over my tiny field of vision. Doctors removed the natural lens of my right eye and implanted a contact like lens as replacement.
At 29 my body grew over the implanted lens. I had to have "yag" surgery to burn off the skin. I'm light sensitive so I couldn't keep my eye open for long with a bright laser pointing at it. The result was that my yag surgery left an island of skin alive in the middle of my eye, unattached to my body. My surgeon was amazed it stayed alive and documented it for publication. The flashes from the camera he used to document my eye was pure torture. Afterwards I had a second yag surgery on the same eye; a unique and unwelcome occurrence.
At age 31 I had cataract surgery on my left "good" eye. I was now using bifocals to read. Reading was so frustrating that I had to give up printed text.
At age 32 my eyes became suddenly swollen and red. I was in a lot of acute pain and discomfort. My cornea's had become infected and had growths coming out of them. I was diagnosed with Keratitis caused by the Staph bacteria. The growths would brush my eyelids as they closed. This infection could have been linked to my last cataract surgery (a batch of bad artificial lens was going around) or it could have been coincidence. For a month I went to the doctor every week and he'd yank the growths out. It was. . . not fun.
At age 33 I had yag surgery on my left eye. No second surgery required this time.
Age 38. On July 4th the fireworks didn't look right. They were all blurry. So I went to the doctor on my 39th birthday and he said it was an end stage RP symptom. The fluid of my eye was drying up and it had clumped together. This large clump would float over my tiny visual field and mimic cataracts. There was nothing they could do about it.
Current Visual Impairments
RP - highly restricted fields, 8 degrees in left eye, 7 in right (160 to 180 is normal)
Eyes correct to 20/40 for distance (using implanted lens in combination with glasses)
astigmatism prevents correction to 20/20
Nyctalopia - night blindness
Photopsia - constant flashing lights around edge of remaining visual field
Floaters - dried vitreous fluid has broken off and obscures my vision in both eyes as it passes over my visual field
Sensitive to bright light (including computer monitors)
Difficulty transitioning from outside to inside or vise versa because changes in light level
Amblyopia (cross-eyed) - two failed surgeries to correct
Monocular vision - I see with one eye at a time. My right eye is for distance, my left eye for reading. If I try reading with my right eye I get headaches
No depth perception or stereo, 3D vision
Keratoconus - blurry vision. I'm never sure what I'll be able to see when I wake up in the morning
List of Surgeries
2 amblyopia surgeries using sedation
2 cataract surgeries using sedation
3 yag laser surgeries - in-patient without anesthetic
10x Keratitis cornea growth removals - in-patient without anesthetic
Total = 17
A friend suggested that I'm now ready to be a MLB umpire.
Timeline
When I was 3 I was diagnosed with amblyopia. I was right handed but left eye dominate (my strong eye). So my doctors surgically straightened my "lazy" right eye and patched my left eye. The hope was that they could equalize the strength of my eyes. When they pulled the patch off, my left eye had turned out. The surgery failed. They attempted once more, this time straightening my left eye and patching the right. After the surgery, my right eye turn back out. A third surgery was not attempted.
By age 5 I was wearing glasses to school. I couldn't see the board well and I struggled. It took me until after second grade to learn how to read.
By age 7 I realized I couldn't see well at night. I was on the swim team and I did great in practice but chocked during meets because we competed outside at night in poor lighting. This was my first symptom of Retenitis pigmentosa.
Age 13 I got hit by a tennis ball in my open left eye causing scare tissue. I'd lost the ball in the air, unable to track it in my visual field.
In my 20's I got into several car wrecks. These were caused by people cutting me off. I was instant Karma. These wrecks weren't my fault legally. But after a series of incidents I took myself to the eye doctor. When I was 25, I was diagnosed with RP. My optometrist didn't know much about it After a few months of research and testing, he decided I was legally blind and shouldn't drive anymore. I hung up my keys for good. A couple of months after stopping driving I starting Orientation and Mobility training - white cane training.
A few months before my 26th birthday I made my way to Johns Hopkins to meet their retina specialists. Johns Hopkins told me that my amblyopia surgery had failed because my brain was forcing my eyes out of sync to get a wider field of vision. I had an ERG on my eye, the only official way to prove RP. The doctors were amazed I'd made it so long in life without being diagnosed. They said that was an indictment of the entire field of optometry. Johns Hopkins advised me to get cataract surgery.
At 27 I had my first cataract surgery. I had the subcapsular "RP" cataract. It was tiny but happened to sit right over my tiny field of vision. Doctors removed the natural lens of my right eye and implanted a contact like lens as replacement.
At 29 my body grew over the implanted lens. I had to have "yag" surgery to burn off the skin. I'm light sensitive so I couldn't keep my eye open for long with a bright laser pointing at it. The result was that my yag surgery left an island of skin alive in the middle of my eye, unattached to my body. My surgeon was amazed it stayed alive and documented it for publication. The flashes from the camera he used to document my eye was pure torture. Afterwards I had a second yag surgery on the same eye; a unique and unwelcome occurrence.
At age 31 I had cataract surgery on my left "good" eye. I was now using bifocals to read. Reading was so frustrating that I had to give up printed text.
At age 32 my eyes became suddenly swollen and red. I was in a lot of acute pain and discomfort. My cornea's had become infected and had growths coming out of them. I was diagnosed with Keratitis caused by the Staph bacteria. The growths would brush my eyelids as they closed. This infection could have been linked to my last cataract surgery (a batch of bad artificial lens was going around) or it could have been coincidence. For a month I went to the doctor every week and he'd yank the growths out. It was. . . not fun.
At age 33 I had yag surgery on my left eye. No second surgery required this time.
Age 38. On July 4th the fireworks didn't look right. They were all blurry. So I went to the doctor on my 39th birthday and he said it was an end stage RP symptom. The fluid of my eye was drying up and it had clumped together. This large clump would float over my tiny visual field and mimic cataracts. There was nothing they could do about it.
Current Visual Impairments
RP - highly restricted fields, 8 degrees in left eye, 7 in right (160 to 180 is normal)
Eyes correct to 20/40 for distance (using implanted lens in combination with glasses)
astigmatism prevents correction to 20/20
Nyctalopia - night blindness
Photopsia - constant flashing lights around edge of remaining visual field
Floaters - dried vitreous fluid has broken off and obscures my vision in both eyes as it passes over my visual field
Sensitive to bright light (including computer monitors)
Difficulty transitioning from outside to inside or vise versa because changes in light level
Amblyopia (cross-eyed) - two failed surgeries to correct
Monocular vision - I see with one eye at a time. My right eye is for distance, my left eye for reading. If I try reading with my right eye I get headaches
No depth perception or stereo, 3D vision
Keratoconus - blurry vision. I'm never sure what I'll be able to see when I wake up in the morning
List of Surgeries
2 amblyopia surgeries using sedation
2 cataract surgeries using sedation
3 yag laser surgeries - in-patient without anesthetic
10x Keratitis cornea growth removals - in-patient without anesthetic
Total = 17
A friend suggested that I'm now ready to be a MLB umpire.
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