Friday 6 January 2012

True Life: I'm Losing my Sight

A side view of your eye, and my eye

I was hanging at my parents house yesterday and happened to catch the show true Life, which is and has always gone above and beyond in showcasing the different aspects that affect today's generation.  As I was watching the show, I kept remembering hearing my doctor's voice as he explained to me my disease, watching the doctor on the show reminded me so much of mine. Watching these kids learn to handle their disease, really reminded me of my struggle to accept my prognosis.  Friday's show really hit home for me as a woman who suffers from Keratoconus, I learned about this disease when I was getting ready to go to medical school, I wanted to become an OB/GYN, which is a strong surgical background, which means you have to have a pretty good eyesight. This complicated things drastically, because as the disease progresses, for some it can lead to blindness, which isn't my case yet, but pretty damn close.

After high school, my vision began to change somewhat and I went and got glasses, then contacts (because I still did sports which meant I couldn't do glasses, gymnastics and cheerleading mostly), not too long after I received my contacts I noticed I couldn't really focus on the computer screen; I thought perhaps my contacts where off somehow and went back to get them changed, my eye doctor noticed that my right eye prescription had changed drastically and insisted I get tested for diabetes. 

I made an appointment that same day with my nurse practitioner and went in, I wasn't diabetic, but once I described all my symptoms she did a CBC and a complete blood panel to rule other things out.  Being me, I called up my uncle who was a Dr and gave him all my symptoms & told him my suspicions, he suggested I speak to my Dr, but he concurred with my diagnosis (gotta love family, keep in mind, I have a nursing background and was on my way to medical school, so, my uncle knew I wasn't just blowing smoke or wasn't being "hysterical").  I went back to my APRN, and with my Dr. we checked out everything, ran all the tests, and my blood panel came back with the numbers that placed me within the range of having Lupus.  We believed that this was helping to affect my eyesight as well, and I coordinated with my doctors, and was given the recommendation of seeing a specialist who dealt with Keratoconus
My first appointment, I was the youngest person in their waiting room, almost everyone else was in their late 50s or older and had other eye issues. When we did my exam the nurse retook the eye test three times because she couldn't believe my numbers where so high. When she left the examination room was the first time I realised how this  disease was truly going to affect my life, and I knew that all the hope I was holding on to wasn't going to fix it, and I broke down, right there at the age of 24 I had been hit with two diseases with no cures, and no rhythm or reason to them. Everything I had hoped for changed.

Before the doctor came in, i pulled myself together, and said I could do this,  it was just something else to work through. No matter how much I clung to my hope, it would die a little more each time as we attempted to figure out which contacts would fit m,, my prescription was so unique my contacts would have to be custom made.  Even before the contacts were made, my eyesight changed again and we had to send back the sample and redo the prescription.

Eventually the contact manufacturer sent a representative, who decided I needed to layer my contacts to be able to see, one soft contact with a prescription then my rigid contact on top to really be able to see. Grand total for all of this?? $600 ....per eye. I didn't mind though I would be able to see, for the first time in a long time without squinting, without any blurriness. 
What my screen looks like to me, as I type

Each time I notice I have to increase the screen view so I can see, heck even to type this, I get pissed. I had huge goals for myself, and due to a unique genetic expression I have had to give up much to my diseases:
Believe me readers this isn't a pity party, there are women who live with Lupus who truly suffer with this disease, and I have had some pretty good years considering. I try really hard not to let it get to me, but when I see shows like this I'm reminded of just how good I have it, and just how bad for some it can get.  Although there is no cure, there are treatments, and each is progressively more aggressive & expensive, from contacts like mine, then comes Intact plastic rings: to pull flat the cornea, to corneal transplant which is the most radical, because it requires a donor cornea.

Watching the young woman who was losing her sight the further her pregnancy advanced made me so sad, cause there would be so much she would never 'see' in her child's life so much she would miss out on.  The little things most of us take for granted, like the expression on a child's face that lets you know they really don't like something, or their delight in little things, yes she will be able to feel, and touch her child to learn so much about them, but something, especially when you could see them before, hit below the belt, and no matter how much we tell ourselves that it's irrational to feel that way, it doesn't matter, it still hurts, that little by little the things you once took for granted are stripped away from you.

I don't by any means believe those who are visually impaired are some how less, but no mater how beautifully described, or how talented the observer at bending words, somethings in this world are truly meant to be seen.

Learn more about Keratoconus here.
All Images courtesy of, and "sunset"
Thanks for stopping by and reading
Be Blessed

1 comment:

  1. Your post touched me. My mother had Lupus but back then they didn't have a lot of tools for managing it. I am glad for you and others I know that there are much better options these days. Hang in there!!


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