I should seriously be sleeping.

It’s 3:30am right now, our bus leaves for Van at 9:30am and out of the last 48 hours I’ve only slept for about 4. Tossing and turning in bed all night is so frustrating. It’s really hard to properly explain the feeling you get when you’re so tired and exhausted that you can’t fathom staying awake another minute, yet, you lay in bed for hours still unable to fall asleep. I don’t even understand it myself but what I do know is that it’s impossible to function normally. I’m more like a shell of myself, a zombie, empty and blank.

My pain level has been ridiculous since Wednesday – miserably so. To be more specific it’s been the worst in my back, shoulders and ribs. Never properly sleeping makes it way worse too. My headaches haven’t been too bad as far as they go so that’s one relief. Thank goodness too because I don’t know if I could handle it.

I’m really dreading the bus trip. Even with the comfortable recliner chairs on the Shriner’s bus, catered to people in pain, the 8 hour trip will be a rough one unless my pain levels lower. My eye appointment on Monday sounds even more dreadful. We were told to expect to be in the waiting room for up to 3 hours before we’re called in. And, in the past we’ve waited much longer than that. Whoever designed the waiting room chairs was not thinking much about the people who actually have to sit in them. It’s almost comical how unpractical in shape they are, making them highly unpleasant to sit in.

All day today I’ve been having some unsettling symptoms in my right eye (the same eye that the stitch is poking out of). I’m getting a tiny ring around the outer and bottom edge of my vision, almost exactly the same as the one that started about a week before that lens dislocated. I’m trying not to think much of it and to be honest it’s pretty easily done. For some reason I can’t actually worry or feel much in regards to things like that, possibilities. My mind automatically shuts those thoughts out and stores them away which is really helpful in dealing with (or technically not dealing with) some of the things that go on in my life. So, other than a weird kind of unease/bad feeling looming around about it, it’s not bothering me a bit.

4 Years Old: The Beginning – Dislocated Lenses

The first time something was ever thought to be wrong with me medically I was four years old. My mom took me to the doctor because she thought I had a lazy eye. Little did she know I was actually found to have “bilateral ectopia lentis“, meaning my lenses were dislocated. The left lens was dislocated up and out; the right down and out. At the time I was only looking through the edge of my lenses. My vision in the right eye was 20/80 and 20/160 in the left, 20/400 at distance. It was hard for people to imagine, that I had never been able to see much a day in my entire life. Yet somehow I had always managed to do things like color in the lines of coloring books.

Next thing we knew we were being sent eight hours away to the closest Children’s Hospital so they could remove them via two surgeries (bilateral pars plana lensectomy). It was a long time ago but from what I remember – and what I’ve been told, I responded to and recovered from both surgeries well. I don’t remember much pain involved in either of those surgeries. Without the lenses I was as good as blind, all I could see was a bunch of fuzz. I was given bifocal glasses for the next 6 years which magnified my eyes and made me really self concious. Even at four the first time I seen myself in them I thought “I’m never playing with anyone ever again. I’ll have to play by myself.”
This was not a normal thing for a child to be born with and so came the first of many times in our lives the word Marfan Syndromewould be brought about. At the time not much was known about the disorder. My parents had not the slightest clue what it even was. At the time though, it was thought the prognosis for a person with the disorder was poor and that those with it would not live a very long life. It would be weeks before I would be evaluated and my heart checked for signs of the syndrome and so my mom chose not to learn anything of the disorder. She couldn’t handle the thought, especially if it might not even come to pass. Although, my grandma took the liberty of researching what little info she could get her hands on and what she learned told her I would not live long. I’m told she spent an hour or so that day screaming at God in the field of their property. At the time I didn’t have many physical characteristics of Marfan Syndrome other than my height and the fact that my fingers were long and slender. The big ruling factor would be whether or not an Echocardiogram showed any dilation of my aortic root etc. This is a major manifestation of Marfan Syndrome and 90% of those with the disorder will eventually need open heart surgery to replace the dilating part of the aorta. Lucky for me and my family, my Echo came back clean. I was out of the woods, or so we thought. We were told then and there that I didn’t have Marfan Syndrome. What we weren’t told is that it cannot be ruled out at such a young age because a lot of the symptoms including the heart problems do not develop until later in life.

But for now it was all over and life could go back to normal for a while. I could see for the first time in my life and the entire trip back home I wouldn’t take my eyes off of the scenery outside. I still hated the way my glasses looked, but I loved how well I could see with them.

{I am not a doctor and the medical definitions and descriptions do not and should not replace those of a medical professional. They are merely there to help give an idea of my situation and experiences. If you are experiencing any health issues seek proffesional medical care.}