Wednesday, March 21, 2012

Turning in Circles....

Please excuse this rant...I am venting.  I need to release this sadness, anger, confusion, self-pity, defeated, hopeless feelings that have been flowing through my mind.  Although I have been suffering for over 16 years, they finally have put a name to the hell that has been my life.  Dysautonomia....yeah, I figured you'd never heard of it because nobody has.  Even my doctors.  The worst part of all this is that, finding the name is just the beginning.  It is a rare disorder that has no cure.  It is a disorder that affects every single move I make.  Getting out of bed this morning, I passed out.  Yes, I flat out lost consciousness and passed out.  Luckily this time, my bed happened to catch me, I haven't always been so lucky.  Concussions are common. 

Often I wonder if this is what my life will be like, and if it is, how the hell do I get myself up out of bed in the morning.  I guess the answer to that is the same reason that I haven't given up a long, long, time ago.  My kids and my husband.  They mean the world to me and it is for them, that I stay awake, when all I want to do is to lay down and never wake up.  It is for them that I somehow through the pain and nausea,  get just enough energy to sit in a chair and watch their soccer games.  It is for them that I put on a smile when that is the last thing I feel like doing.

 Dizziness, nausea, lightheadedness, tachycardia, barely having enough energy to walk half a block away.  This is my reality. My stomach is so distended that I went from a 16 to a 3x and can still only wear sweatpants.  I look nine months pregnant and to be honest, I am tired of explaining myself.  I am not fat, I am not lazy and if I could get on my feet and work out, you can bet your ass that I would be doing it.  I wonder, do people really think this is a lifestyle I would choose?  Do people look at my house and think what crumbs we are?  I wish that people could walk one mile in my shoes and they would finally understand what my struggle to just be normal is like.

I want to drive.  I want to be able to just get up and go to the store when I need to.  I want to wake up just one morning and not have to worry that gravity will be my enemy.  I would like to cook a meal for my family.  Did you ever think you would hear that cooking or cleaning is a luxury?  To me it is.  My house has become my jail, not because I want it to, but because that is just the way things are.  I often have little patience when I hear someone complain that they don't feel well.  Welcome to my life 24hrs a day, 7 days a week.  My laptop is my communication with the outside world.  Yeah, this sucks, to put it bluntly.  I by no means want your pity.  I just want you to understand when I wear sweats and baggy t-shirts, it is because I can't fit in my clothes.  I want you to understand that the times when I just can't paste on a smile and be happy, it is because I just can't take any more at that moment.  It doesn't mean that tomorrow, that smile won't be pasted back on my face, or that I have given up.  It is hard to be so strong all the time.  It is hard to look at my life and be fulfilled.  It is hard to look at my kids and know that they deserve so much more than I can provide for them.  It's hard looking at my husband who has been by my side through everything, and know that we still have a uphill climb.  I would give anything to be a real wife to him.  Would give anything to be that same person he fell in love with 17 years ago.

I am pissed that it took this long to figure out what is wrong with me.  I've been to specialists at the very top of their profession and they look at me like I am crazy.  I have been through many MRI's, CAT Scans, X Rays, EEG's, EKG's, and Ultrasounds.  I have been poked and prodded as if I was a vodoo doll.  I've had tubes where the sun doesn't shine and down my throat.  I've drank so many liquid concoctions over the years, that just thinking of them, makes me nauseas.  I've swallowed a pill that takes pictures as it moves through my body and I've eaten a nuclear egg.  I have been on so much medication and have gone through so many side effects that my body will probably never recover from.  I am so addicted to medicine that if I ever missed one, I would likely go into a seizure, that could ultimately kill me.  I've had doctors that threw up their hands and told me they had no idea what was wrong with me.  I've had doctors with a "God Complex" that told me it was all in my head and what makes me so angry at them is that after so long with no answers, you wonder if they are right.  I want people to understand that I'm not lazy, I am sick.  Walk one day in my shoes before you pass judgement on me.  You have no idea what I go through on a daily basis just to make it through the day and I don't think anybody can truly grasp how difficult it is without living with it day in and day out. I don't expect anyone to understand, I simply ask for your support.