I was updating the blog regularly until I went to school. There was just no way to keep it up after that. School was pretty hard for a variety of reasons. Mostly because I can't see very well and it took me a long time to keep up. I did end the semester on the Dean's list, which feels impossibly amazing.
As far as my disability, my macular edema has convinced my LTD insurance company in ways my RP never could. I guess they just understood macular edema better than RP. They told me I've been moved to long term maintenance. They aren't exactly trustworthy but that sounds better than the short term harassment policy they had me on.
Last year I got to travel, this year I went back to school and did well. What am amazing 12 months. Life and visual impairment don't have to suck.
Showing posts with label RP. Show all posts
Showing posts with label RP. Show all posts
Tuesday, June 14, 2016
Monday, October 5, 2015
Macular Edema
In July I was diagnosed with macular edema. It's a rare side effect of RP. Macular edema was causing my remaining central vision to get blurry. It's like having RP and macular degeneration at the same time. From a personal standpoint it made my vision much more sensitive to bright lights and unpredictable.
My doctor talked to me about the standard treatment - a shot of cortisone to the back of the eye. The side effects of this treatment include a 30% chance of developing glaucoma. So I have an eye disease, RP, that causes blindness. RP has caused a condition, macular edema, which can cause blindness. Macular edema has a treatment which can cause glaucoma, which can cause blindness. Also, blindness.
So we decided not to do the shot just yet. Instead we started an off label treatment; cortisone eye drops. The drops hurt a lot and I wasn't great at taking them because of all the travel I've been up to. Fast forward two months and my vision has improved. I'm not as sensitive to bright lights and I've regained a line of acuity on the eye chart. Great news. So I'm going to do another two month round of the painfully suckers. I hope we can wipe macular edema out this time.
So I'm left with something I almost never get. Good news from the eye doctor.
My doctor talked to me about the standard treatment - a shot of cortisone to the back of the eye. The side effects of this treatment include a 30% chance of developing glaucoma. So I have an eye disease, RP, that causes blindness. RP has caused a condition, macular edema, which can cause blindness. Macular edema has a treatment which can cause glaucoma, which can cause blindness. Also, blindness.
So we decided not to do the shot just yet. Instead we started an off label treatment; cortisone eye drops. The drops hurt a lot and I wasn't great at taking them because of all the travel I've been up to. Fast forward two months and my vision has improved. I'm not as sensitive to bright lights and I've regained a line of acuity on the eye chart. Great news. So I'm going to do another two month round of the painfully suckers. I hope we can wipe macular edema out this time.
So I'm left with something I almost never get. Good news from the eye doctor.
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