Monday, January 16, 2012

Intro To Me

The land of blogs is completely new to me. I've always thought it would be cool but never thought to actually do it. I'm not really sure if this blog will have a set theme but hopefully as it takes shape it's purpose will present itself on it's own. Of course there are numerous things I could write about but for now with this post I will simply introduce myself. Well here goes nothing...

I'm twenty-eight years old and not sure if I like it. I miss the good old days sometimes when the biggest worry was getting a research paper turned in on time and what I was going to wear to school tomorrow. I miss the great friends I had in high school that I've since lost touch with other than on the wonderful world of Facebook. I of course don't miss curfews, punishments, bedtimes, phone restrictions and those annoying girls that always seemed to be in the way at school.

Now I'm a mom to two amazing girls that are in essence my entire life. They totaly drive me crazy but I can't possibly imagine life without them. There's quite an age gap between them so that of course makes for some interesting challanges sometimes but we manage. At least I think we do, would you call wanting to pull my hair out sometimes managing??? Well anyway back to my story.

I have the cutest little dog in the entire world who will be one year old at the end of this month. He is a shorky and we absolutely adore him.

We live in a typical house in a pretty good area of town in which it rains far to often. All in all it's a relatively good life. Like anyone else I have normal day to day drama, stress and chaos. Honestly, without at least a little of that life would seem boring.

Unfortunately, some of my stresses are made worse by my disability. Oh yeah, did I mention I'm blind? Well I am and most of the time it's no big deal but other times that fact is truely the bane of my existance. There is no cure for the conditions that I have as of yet. I have Retinitis Pigmentosis(RP) and C.O.A.T.S which is an acronym for a really big word that I sadly have no knowledge of how to properly pronounce let alone spell. Basically in a nut shell I was screwed right out of the gate.

I was born with both conditions but wasn't diagnosed until the age of five when I was starting school and went in for a regular eye exam. RP is a condition taht affects the perifial part of the eye and C.O.A.T.S covers the central portion of the eye. I didn't start really losing my vision until I turned eighteen. Up until then I was considered legaly blind but no one around me really knew the difference. I did things completely normally. I could play catch, read regular sized print, walk or run without assistance and yes before you ask I could even dress myself and tie my shoes.

I became pregnant my Junior year of high school. Wait, before you judge or comment I'm well aware it wasn't morally the most responsible act I've ever done. But, I have no regrets and wouldn't change a thing because it's helped to make me who I am today. Also before you ask yes I graduated high school with my class with an official diploma. Anyway as I was saying...

Towards the end of my pregnancy was when I started to notice some issues with my vision. So I guess that would have been slightly before I turned eighteen.

I was laying on my parent's bed watching TV one night when everything began to change. I went to itch my left eye and when I did that made me look with only my right. I remember this like it was yesterday. It scared the heck out of me. I was looking up at the time staring up at the ceiling fan/light. It had five lights in it modeling what a five would look like on a dice. When I itched my left eye making it close, suddenly I could only see two of the five lights. I didn't really know what to make of it. I was really wierded out and kept covering my left eye and then removing it to compare what I wasn't seeing.

I yelled for my mom and dad to see what they thought. They said that I was going to have to go see my specialist and get it checked out as soon as possible. They of course tried to do the parent thing and comfort me by saying oh it's no big deal I'm sure it's nothing.

I however was pretty sure something major was going on. The next day the doctor confirmed my fears. My retina had detached. The only way to stabalize the eye was to surgically fix the problem. Seems logical right?

The only problem was I was starting the last trimester of my pregnancy and couldn't have eye surgery. The doctor said I would have to wait until I delivered my baby girl. Meanwhile, the only thing we could do was hope and pray no other complication came up with my vision while I waited for the surgery.

Soon after that I learned that my baby was breach and I would have to have a C-section instead of a normal delivery. I must admit I was totaly freaked. I was barely eighteen and was going to have two surgeries done in a matter of months. Also, I'm sort of a baby when it comes to pain so the entire prospect scared the bejeases right out of me.

Since I had to have surgery in order to have my little girl that pushed the eye surgery out a little further. The doctor wanted me to recover fully before putting me under the knife again.  Which on one hand was cool with me because again, not a fan of pain or knives.

The birth of my beautiful baby girl went flawlessly and the recovery while bumpy, went pretty good. I was eager to get the eye surgery done and over with before something else went wrong in my eye. I didn't like the idea of someone tinkering with my eye but I braved through it and it went flawlessly too.

I don't really reccomend eye surgery as an elective though just sayin. It is seriously the wierdest thing I have ever experienced. When you first wake up afterward your eye is patched so you don't try and scratch or anything. Even though they tell you ahead of time that it's going to be like that it doesn't make the experience any easier. When you wake up and are all groggy from the knock out drugs all you know is you went in being able to see light and came out in pitch blackness. It's not very comforting let me tell you.

From then on life at least as far as my vision was concerned went down hill tremendously. I have now had about tenn eye surgeries (more or less) all together between both eyes. Some were serious and others were minor procedures that were done right in the doctors office. None of the surgeries made my vision any better though. Their main purpose was to keep the eye stable and keep me from losing what ever vision I had at the time of each surgery. The two pre-existing conditions that I started out with later stemmed into further trouble. In addition to those I'm now blessed with glaucoma, nystagmous and I had catteracts. These new conditions are also in both eyes and also have no cure, well accept for the catteracts of course.

I'm down to pretty much no vision in either eye. I have a very small amount of light perception in the left and can't even see shadows or shapes in either. It's been a roller coaster at best and an emotional wreck at worst. I like anyone else have my bad days where I don't even want to get out of my bed in the morning. But, I have more good days. I know that my little girls need me to be me and not be depressed lets have a pity party me.

So, I deal the best way I can even if some days it's just going through the motions. I make light of the situation and try to laugh it off as much as possible. I still have the use of all four limbs, a strong heart, a voice and I have really strong ears that sometimes hear more than I want them to. Reguardless of my vision I live a relatively normal life with mostly minor hiccups. But really it's the hiccups that make life exciting and I'm cool with that.

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