Dear Lit Loves,
Greetings literature lovies! Well, I keep rambling about how traditional publishing needs to get with the program when it comes to the memoir genre and start locating some bravery and publishing those of us with patient narratives regarding unusual chronic illnesses. Truth Be Told: I think traditional publishing is timid and scared to take on any narrative/memoir author who is NOT a Kardashian or Trumpster so I have decided to just go ahead and relate some of what is inside my memoir manuscript of chronic illness here on my blog. Until I am able to uncover a literary agent with enough intestinal fortitude to sign a relatively unknown Southern writer, this is the only way I have of getting my story to the world at large and hopefully helping people who may discover that they have the same chronic conditions I have.
So today, let's discuss Uveitis. Say What?! Specifically, I have an eye inflammation disorder named Uveitis and so far it has only occurred in my right eye. My left eye is completely normal. Stone cold truth. The part of my eye that has chronic inflammation in the right eye is called the uvea which is the middle layer of the eye between the retina and the sclera (white portion of the eye). And here's the real fun part: I never really know when Uveitis is going to decide to become active, but I most definitely know when it is quiet and not creating havoc with my sight.
I first discovered I had Uveitis when I was sixteen years old, sitting in the back of my Geometry class and suddenly I started seeing black squiggly lines, dots, swirls, curlicues, etc. in my line of vision. Plus, my vision became blurry. So I was able to see an opthalmologist in High Point, NC who had studied at Johns Hopkins. He was the most laid back yet gifted eye specialist with whom I could have gotten an appointment. I explained to him what was happening with my vision and even drew a picture for him of all the strange lines, swirls and dots I would occasionally see. At this point, my right eye had turned red, it ached, the vision was blurry and whenever I went outside my right eye would become watery and I would don a pair of sunglasses.
This eye specialist and surgeon dilated my eyes and inserted numbing eye drops. Fifteen minutes later he arrives back in the patient room to examine my eyes. I heard the following, " Uhhh humm. Okay." Then he took a look in the left eye and immediately reverted back to analyzing the right eye. Suddenly he slided backward in his rolling chair, pushed away the eye examination instrument panel, and said, "You have Iritis or what's technically known as Uveitis. The interesting news is that it only appears to be occurring in the right eye and not the left eye." Then he showed me a picture of the inside of the eye and pointed to the uvea which is the portion of my eye that was inflamed. He assured me that I was not losing my mind or hallucinating. He explained that this chronic eye inflammatory disorder is usually first seen in people older than me; however, I should not worry because it was a treatable condition. Whew. So the eye specialist started me on an eye drop called Prednisolone Acetate !% whereby I was to place one drop in the right eye four times daily for the next month. In addition, to soothe the eye he prescribed an eye drop named Atropine whereby I placed one drop of it twice a day in the right eye. Fortunately, after a month of extensive eye drops my sight was back to normal; however, I could not just stop the eye drops instantly. Both eye drops were tapered back over several months time.
Now here's the interesting part: there is no cure for Uveitis. It flares up when it chooses. Most of the time, my Uveitis flares when I am stressed, sick, or have just had an eye procedure or if the eye is injured in some way like when I stepped off the school bus at my high school one day and two males were throwing a football back and forth and the football hit me above my right eyebrow. Did I ever mention I did not attend school with some of the brightest people in the world? Inflammation overload began almost immediately. Each time the Uveitis condition would become active, I would generally be prescribed the same steroidal and dilating eye drops. Here's the part that is intriguing: the eye drops used to treat Uveitis cause development of cataracts and eventually Uveitis also caused me to develop Uveitic Glaucoma in my right eye. At the age of thirty-two I had surgery to remove a cataract from my right eye and insert a new lens. At the age of thirty-five I was informed I had developed Uveitic glaucoma whereby fluid would build up in my right eye and not be able to drain adequately resulting in my eye pressure going sky high. Suddenly, I was experiencing not only seeing the cells of my right eye, but also flashes of light, eye pain, nausea, and stabbing headaches. At the age of thirty-seven I had what is known as Baerveldt Implant Surgery on the right eye.
Baerveldt Implant Eye Surgery involved the skilled hands and veteran experience of a glaucoma surgeon who inserted a silicone implant in the far right corner of my right eye which allows the excess eye fluid to drain and thus lower my eye pressure. No. It was not a simple surgery, In fact, I had to have four additional surgeries in order for the implant to work at its optimal capacity. And every ten or more years, Uveitic glaucoma patients generally have to have the silicone implant replaced because scar tissue develops and can block the implant from draining the eye fluid at an optimal capacity. Oh, and a patient cannot be completely knocked out for the surgery; the patient can only be sedated as you have to follow instructions during the surgery to move your eye up, down, right or left.
Thus far I have been lucky that my original silicone eye implant has not had to be replaced as I have not developed serious scar tissue. Recently though, my retina specialist noticed that my retina was swelling and he placed me not only on Prednisolone Acetate 1% for Uveitic inflammation, but also a new eye drop called Ketorolac. I place both sets of eye drops in the right eye four times daily. And I pray that this decreases my retina swelling. So far so good. I will know for sure how well this new eye drop is working in August when my retina is once again mapped or photographed to determine if the swelling is decreasing. I have not asked what happens if the eye drops do not decrease the retina swelling because it most likely involves surgery and why stress myself before I know for sure what will happen, right??
I guess some of us are just blessed with varying forms of chronic illness that plague us our entire lives. I did not do anything to cause Uveitis. It just happened to decide to show up in my right eye when I was sixteen years of age. I often wonder if I will eventually lose the vision in my right eye as that scares me since I love to read and write and drive my Mustang. And there is always the lingering thought that Uveitis might suddenly develop in the left eye as well. Most people who are diagnosed with Uveitis have it in both eyes, but I have been a strange case in that mine has not. According to The Uveitis Organization more than 2 million people in the world have been diagnosed with Uveitis. In the United States, Uveitis afflicts 109,000 or more people.
How do I cope with this strange eye condition? I make sure that I have both veteran retina and glaucoma specialists at one of the best university medical institutions in the country. I regularly visit those eye specialists for rechecks of my eyes. I never just stop any eye drops cold turkey because I know those eye drops must be tapered or bad things can happen. And I roll with the punches whenever something new occurs like this recent swelling in my retina. All you can do is all you can do, but all you can do is enough.
Till my next post,
Grace
(Amy)
