I’m at the Bodine Center For Radiation Therapy where an eye specialist has just informed me that I have two options to treat my Graves Eye Disease; radiation therapy or high dose steroids.
I don’t want radiation therapy. But managing type 1 diabetes while taking high doses of steroids is challenging. Steroids raise blood glucose levels. High levels of steroids cause incredibly high blood sugar levels requiring high doses of insulin to keep blood glucose in range. That increases the risk of hypoglycaemia and hyperglycaemia.
Radiation therapy has its own set of risks including possible brain or ocular cancer. The treatment is 75% effective.
I have two choices neither of which are good. It’s like voting in a presidential election.
Next week I’ll start three weeks of radiation therapy. I’m not sure how I’ll manage the logistics of work and treatment. The New Jersey Office is in Iselin; 45 minutes north of my home. Philadelphia is 80 minutes in the opposite direction. Doing this therapy rules out commuting to New York City during those three weeks.
I think I’ve had more “sick” days in the first few months of 2019 than I had in the first half of 2018. I put sick in quotes because all of those days off have not been related to viral or bacterial infection. Some of these sick days are related to recovering from an injured foot due to hiking or walking. In February I injured my right foot while on a two-hour photo walk through the Griggstown Native Grassland Preserve. Two weeks ago I hurt my left foot while on a two-hour hike through the St. Michaels Farm Preserve in Hopewell. In January I was out of the office for a few days due to food poisoning. In those situations, I had suffered an injury to my body.
Today, I am feeling the effects of whatever tests were done at my visit to the orbital surgeon at Wills Eye Surgery Center to determine the severity of my Graves Eye Disease. Some of the tests— look as far up as you can see for the next 30 seconds— were painful. The sensitivity to light that I felt yesterday after dilating drops was to be expected. But the feeling continued into the evening and is no less severe this morning. We have a wet, overcast day here in New Jersey. The light from the window is causing some minor pain. I can’t imagine driving in this. I adjusted the brightness of the iMac’s display and increased the font size in Safari to make it easier on my eyes.
I am sitting in the dark of my home office workspace with just the light from a second-floor window. But even that feels uncomfortable. I called in sick because I don’t see how I could drive to work and work in a fully lit office while looking at two displays all day. Typing up this blog post took longer than I expected. I took numerous breaks to give my eyes some rest in between typing sentences. I am hoping that a day of rest will help.
I’m terrible at being sick, though. When I can’t go hiking or walking because of a foot injury, I like to read on my iPad. Or I may spend some time in Adobe Lightroom, editing some of the back catalogues of images on my iMac. Or I would binge-watch something a series on Netflix or a watch a movie on the Apple TV. But I can’t do any of that today. Can I?
I was at Wills Surgery Center today for what I thought would be a quick morning of tests. But the optical surgeon had a lot of questions, so they performed a series of test. We were here until lunchtime. If you don’t know, I have Grave’s Eye Disease which has progressed to the point where I may need surgery. I’ll know in a few weeks when I return for more tests. The doctors are concerned about pressure behind the eyes. If the pressure becomes too high, the muscles of the yes could squeeze the optic nerve and cause blindness. I have a follow up in three weeks for more tests.
I am looking out at the Walnut Street Theatre through the windows of the waiting room at Wills Eye.