So, I woke up around 4 this morning and have been in one of those introspective, thinking mood...Ahh, it never stops. lol. But I wanted to share something because it's just an issue I haven't discussed much. Actually, I don't give it a great deal of thought - unless I forget my sunglasses on a bright day.But, I just felt like it for some reason.
For those of you who don't know, over the Summer, I was diagnosed with a rare, genetic eye disease called Choroideremia. It's gender linked and is generally a male-only disease. Females are carriers of the gene, but only if they're first-born. The first-born son of a carrier or someone who has it will have the disease, first-born daughter will only carry. If a female carrier gives birth to a girl first, it breaks the chain in the family and that's the end of it. My dad has the disease and it's lead to lack of his peripheral vision (permanent tunnel vision, basically) and he's night blind. Once it gets dark, he can't see. Extreme light sensitivity is also a sympton. That's the only eye issue I've ever had is a very severe and somewhat painful sensitivity to bright lights.
I'd never had my eyes checked before, so I finally went to the eye doctor over the Summer. In over 40 years, the doctor had only ever seen two cases of Choroideremia, my dad being one. He checked my eyes and I went out to wait for the drops to wear off. As I did this, he called my mom back to talk to her. After a few minutes, he called me in. He sat me down and gave me the rundown of what was up with my eyes. But, I thought he was just telling me I carried it, which I figured. I didn't get it at the time. We got in the car and my mom turned around and said "You know what he was trying to tell you, right?" and I said "Yeah, that I'm a carrier." and she said "No, you have it." Which lead my little brother to nearly wreck his car. We were dumbfounded. There should be no possible way that I should have this disease, but, it happened. I started crying because I was afraid. Having seen what my dad has suffered with all these years, I had good reason. I needed more testing and photos done, but he was pretty certain.
If any of you have seen the odd looking orange photos of my eyes, the dark spots are an indication of the disease. I already have a thickening, but my vision is perfect. The pictures told him for certain that I had this disease. He said they looked just like my dad's. My mom and dad's mom were there with me and both started crying. Grandma was just devestated because she seems to feel guilty in all this. Of course, that isn't the case. The doctor hated having to tell the news. I cried for a second and then said "Well, y'all know I can't do anything halfway." Hahaha, Grandma smacked my leg for making jokes. That's my coping mechanism. It wasn't all bad that day, I got chocolate :) lol.
I'm blessed to have good vision but am preparing because it may not always be the case. But I'm hopeful. Ha, like I said, this is further proof I can't do anything half-assed. Go big or go home, I guess. I choose to take the diagnosis with hope and humor. Hell, what can I do about it? Not a thing. There's no cure right now and very little is known about it. But the way medicine is advancing these days, I'm not going to worry over it. It's all the more reason to see the beautiful things in life. We must learn to accept the things we cannot change. I'm thankful to be ahead of the curve on this. I've come to feel that, although it's hard to swallow, it's not worth crying over. Tears are only going to blind me and I won't let them or this disease take my sight from me.
Monday, October 26, 2009
Blinded By The Light
Posted by Elle Barbie at 4:02 AM 0 comments
Sunday, September 20, 2009
I Want...
I want to act. To be a famous movie actress one of these days. If it were up to me, I'd be one already. One of those child stars. lol. But, it never played out that way and I accept it.
I want to get married and have at least two children; One girl and 1 boy.
I plan to live in Texas for a little while, at least. Or make it my permanent residence with time spent wherever my work may lead me, naturally.
Hopefully I'll be on Oprah someday. lol. I loove Oprah. And I'd love to win an Oscar. That's one of my biggest dreams.
I love singing and dancing, so I'd like to have a career as a singer as well. Does that sound too ambitious? haha, Some people have done it and done it successfully, I'd like to be one of them...maybe win a Grammy award. lol, Dream big or not at all.
I'm planning, as of right now, to start school in the Spring at OU where there's a good theatre program. I'm kind of excited. I'm moving to Texas in a couple of years, Corpus Christi or maybe Dallas. I have a lot of family down that way and I've never been there.
I want to finally start having a real life. I kind of did for a while and then things got away from me for this reason and that reason. I want to have this feeling back that there's someone out there who gives a damn about me. I was almost happy for a while. I had freedom. I've yet again allowed myself to become my own prisoner and that's the most confining prison to live in.
I want to love again. To love like I was never hurt. I believe in love. How can it not exist? Look around and you're sure to find it somewhere. I know who I want, it's just a matter of positive thinking right now...I'm lacking in that area, but I know I can do this. I believe. But, love is a whole 'nother story entirely and that's far too ambitious a writing project for me right now. lol.
There are so many things I want to do. So many things I want out of this life and I just hope I can do it all and do it all well. But most of all, in addition to love, I just want to be happy. I don't know that I ever have truly been happy in my life and that is my greatest dream of all. To be happy and to find love. Those are the only two things we really need in the very end...<3
Posted by Elle Barbie at 12:33 PM 0 comments
Saturday, September 19, 2009
It's Never Enough
So, I haven't written in a while and I can't sleep. Emotionally, I'm a bit spent, and I can't sleep. I just need to vent.
All I want is to believe you still truly care about me without expecting anything from me. I found out some rather distressing information the other day and on one hand, I'm so upset and on the other, I almost don't care. But I miss someone more than words can say. I wish I didn't, but I do. I care far too much and have invested more of myself than I ever should have. But you can't fight what your heart wants and how it feels. I know why they call it heartache. It's a very literal term. I think if my heart could cry, that's just how it would feel. The pain is almost unbearable and I want to cry, but I'm just not able to. My heart is sad and heavy and I want it to have that lightness again. Oh, how I'd love that. I think I fell somewhere along the line and nobody was there to keep holding me up.
God, when I'm in your arms, it's the most peaceful feeling in the world. Two people at peace, not needing to speak. There's a knowing-ness in that embrace that I love and I miss. Have you ever needed someone so bad? It means everything to me to be called "special" and know someone actually means it. Looks you dead in the eye and tells you how special you are and that you were missed. Am I less special now? Am I not missed so much? Maybe I did something wrong, I don't know. I know I maybe made a mistake by falling, but you're as much in the wrong for expecting me not to.
The heart wants what the heart wants. I know what it wants and I'm at a loss. To want something you know you can easily have but for it to be so somehow out of reach is maddening. It's one of the most sinking, soul-crushing feelings. I can't get you off of my mind. I haven't been able to in ages. I'd love to, but it seems impossible. The "special lady" fell for an even more special man and he's slipped so far from her fingers....Now I can cry.
Sorry, I just needed to get some things off my chest.
Posted by Elle Barbie at 8:39 PM 0 comments
Tuesday, September 1, 2009
A Drop In The Ocean
Sooo, I wrote this and I'm not sure that it's any good, really. But there's a bit of truth behind it. I can't say I've never felt this way before. Or that I don't to a point right now. Anyway, enjoy.
Posted by Elle Barbie at 6:09 PM 0 comments
Monday, August 31, 2009
Oh, How I Adore This Song
I absolutely, positively love this song. It's very mellow, but I just adore it. It's sad, though. Most of the time, it actually makes me cry. But that's mainly because, right now more than ever, I feel every word of that song. I feel it deeply. It's so beautiful and so relateable. He's actually quite a good artist whom I'd reccomend any day. "A Drop In The Ocean" is another good song of his.
Posted by Elle Barbie at 7:44 AM 0 comments
Sunday, August 30, 2009
An Ulcer Waiting To Happen
It really is a wonder to me that I have never had an ulcer. I have the most nervous stomach & I stress over stupid things. I have that overly-worried, stressed out feeling and I don't have a clue in the world why. But it's killing me and I do not feel good at all. It drives me crazy. I cannot figure it out. Nothing's going on, so I don't have a reason to worry or stress over anything, but just...BLECKK!! I feel like crap! lol. Not cool. I don't think it helps any that the weather is changing, I have terrible sinuses, and I didn't sleep worth a darn last night. I've been up since 6 for no real reason other than I couldn't sleep. I'm the most horrible insomniac you could ever imagine. Seriously. I think I'm gonna go try to lay down for a while and write more later.
xoxoxo
Posted by Elle Barbie at 5:50 AM 0 comments
Saturday, August 29, 2009
Happy Birthday, Michael
So, today would have been Michael Jackson's 51st birthday. His death has officially been ruled a homicide and I can't tell you how angry that makes me or how much it breaks my heart. I loved Michael more than I can say. He's my favorite singer and always has been. I had his music in times when I had nothing else in the world. I had his words to bring me comfort and a sense of being understood at times when I was lost, hurt and alone. His music provided me with a much-needed escape from life when life wasn't worth it; A light in dark times. And for all he's done for me, for how he's made me feel, I will love and treasure him always. May you finally be at peace, Michael. Happy Birthday.
Posted by Elle Barbie at 7:47 PM 1 comments