Sunday, January 24, 2010

Here we go.... we are, a mere few hours away from the big day. I have to be at the hospital at 5am, yea that early. Apparently I can't be a normal person (although we should have learned that the day I was diagnosed with Chiari) but I also have Von Willebrands Disease, meaning my blood is missing some protein it needs to clot. So I am taking a journey to the hospital a wee bit early to attempt a transfusion of sorts, if this works the surgery will go as planned, if not ,well its back to the drawing board for me and my big brain.

I have been going through the motions the last few days getting everything ready, packing a bag, getting comfortable sweats to wear, cleaning up and doing laundry yet its just now hitting me. For the last however many years I have lived in pain, pain that never had the same face, it came and went as fast as it showed up. It would trick me and come at the most awful times. A year ago the answer to the question of why I was in pain was answered, and if a few hours I go to war. I am fighting this and I am going to win. The transfusion will work, the decompression will work, and this time next month I will be able to say that I have been waking up pain free.

A friend of mine told me that it would be here before I knew it, and I didn't believe her. Yet, here I am, almost in shock that it is here. I'm debating on going to sleep tonight, I have to be up at a weird way, it feels like Christmas Eve. Like I will wake up in the morning and not be sure what is under the tree until I get down there. I'm not sure what tomorrow will hold, until I get there.

So does that mean Dr. Beijanni is like Santa Claus?? Cause if that is the case, I kinda wish I'd get a puppy or something instead of a few days at the hospital and a plate in my head. hmm...I changed my mind, I don't like the Christmas analogy.

So here is to hoping that my blood isn't thin and everything goes smoothly! I will try to update as soon as I can, I'm not sure how that will work. I will have pictures and the play by play, as much as I can remember that is. I'm going to ask Ryan to write things down for me, I'm sure I won't remember.

I guess I am signing off for now....take that Big Brain and Thin Blood...I OWN YOU!!!

Monday, January 11, 2010

Live Like We're Dyin

You gotta start looking at the hands of time we’ve been given here. This is all we got and we gotta start thinking it. Every second counts on a clock that is ticking, gotta live like we’re dying. We only got 86 400 seconds in a day to turn it all around or throw it all away. We gotta tell them that we love them when we got the chance to say….

Now before you all start panicking thinking my worries are getting the best of me, there is a reason I wanted to talk about this particular song lyric. Most of you probably know that this comes from the song “Live Like We’re Dying” by Kris Allen. I was driving into work this morning and heard in on the radio for about the thousandth time but today the words really started to sink in.

In my previous posts you may have noticed a trend of me speaking about seeing the true colors of people when you are getting ready to go through something huge. You really find out who cares about you in your friends and your family. They say the same about planning a wedding (which again, was experienced first hand not too long ago). Why is it that it takes a major event to discover who truly cares, and why is it that the people around you do not always care? I suppose this is a topic I have struggled with throughout my life.

My parents always told me that I tend to trust people to easily or always give them the benefit of the doubt, which in turn ends up hurting me in the end. I have always been this way, I have had ‘friends’ take advantage and walk all over me, I have had ‘family’ truly make me feel like garbage, yet I always go back for more. It is not that I am a weak person, I just feel that if I care about you, I’m not giving up on you.

So why is it that others can’t be the same way? We only have so much time on this earth, are you going to be able to look back at your life and say, “You know, I gave it all I could and I was a good person. I loved everyone in my life and tried my best.” Or are you going to say, “Screw them, I’m not wasting my time…” Hopefully you are going to say the former.

Why is it as humans that we generally let the smallest things destroy our relationships? Whether it be a misunderstanding, a cloud of jealousy, or a simple lost confusion, it isn’t worth it. I do not understand the drama people let into their lives and how they react to it, it is beyond my comprehension where the days of communication went. We simply take another road and do not TRY to fix a problem. Communication is a two way street, it isn’t up to me, or to you to attempt to make things right, it is a collective effort. It is my hope that bridges can be fixed and stronger foundations laid for myself, my family and my friends. And for you, the person reading this that may be going through your own life struggles. It’s not the end of the world, it’s the beginning and your fate is your own hands, how are you going to play the cards that are dealt to you? Hopefully you are going to open your arms, your mind and most importantly your heart and try to live every day to the fullest, so when you look back at your life one day you can say “I lived it the best I could and I have no regrets, only love”

Here we are, exactly two weeks to the date and a certain calm is blanketing over me. I am surrounding myself with those I love, and the door is open for you to come in and ride this journey with me, I promise, I’m not going to let any of you down.

Wednesday, January 6, 2010

I Want to Be Selfish.....

19 days and counting...and I want to be selfish.

How do you want to be selfish, Melissa? Well, easy, I want to put if off, I am ready, but I'm not ready. Sure, that doesn't sound too selfish to a lot of people, selfish would be going through with it. But it is not. For the last 6 months I have been affecting the lives of others by how I feel. Examples:

My husband. 3 years ago he started dating this vibrant, fun, happy girl. Now, he is married to a girl that can't even get out of bed in the morning without his help. Now, how is that fair?

Work....last year, they hired someone that was aware of a condition she had, but still went to work everyday with a smile on her face. Now, they employ a zombie who is either on pain meds or muscle relaxers 95% of the time who is lucky to make it a full 40 hours.

Parents...had a daughter that was there for them when they needed help around the house. Now, have to worry about how she is doing on top of themselves, coming over and helping her around her house.

Selfish isn't going through with the surgery and asking my loved ones to help me through recovery. Selfish is not going through with it and continuously affecting the lives of those around me. You see, the best way to describe this is I wear a multitude of masks. You see me walking through the office and I'm giggling and laughing, always optimistic. You walk into my office and I am slumped over in my chair looking at anything but my computer screen because the glare hurts. You see me being compassionate, putting everyone else before myself. You see me pretending the pain isn't there, making excuses like, "Oh it doesn't hurt today, I think I just slept wrong. No, I'm feeling ok, its just cold in here and my eyes are blood shot". The face behind the mask is just me. Nothing exciting, but all the same, a person that wants the life back she once had. When walking the dog didn't mean ouchies, that sleeping a certain way didn't mean pain for 2 days, that coughing didn't bring tears to my eyes because it was going to hurt.

This weekend I was asked by a few family members, including my own mother, is this really the only option? Yes, it is. Because people aren't aware, enough research hasn't been done. That is why gaining awareness is the most important thing! If I had the money I would get a billboard and say, Yes Chiari is real and it hurts, donate money for research today!! But, I don't make that much money!

So, let's do this. Let's get the band aid put on the problem so the energy I have can be used to raise the awareness and help others gain understanding. It's a start, and I feel like it is what I am supposed to be doing. And then of course once the recovery is over I can focus on being me again. So no more masks, the smiles will be real, and brain will fit in the skull like it was supposed to in the first place.

My new nickname at work is "Brain". It is funny how it means something so different to me then one would think. In high school, being called Brain was like social suicide. That meant that you were smart, probably not considered attractive the popular boys and you had a 'bright' future ahead of you. In high school I don't think I would have minded it too much. I definitely wasn't the smartest cookie, and I wasn't the most attractive. In fact, I think plain Jane is a perfect definition for who I am. I was all personality, and I still am today. If I didn't have a personality, what would I have? A big brain. Yea, not so much on the fun side. So I take the nickname Brain with a smile, because even though it means I have a big brain, it makes me feel smart. Why isn't that the case, you think if a person's brain didn't fit in their skull that would mean they were super smart, I missed that train. Dang. But even though the smarts weren't there and I was a plain Jane, it worked for me, still does.

So, here we are, 19 days away from the beginning of the rest of my life. I can hang the masks on the shelf and just be me, because that is the best look on me anyway! :)