It wasn't supposed to be this way

I remember I was laying in the ICU curled up in a fetal position thinking this must be a dream, there is no way this pain is real.  No one can possibly survive this much pain.  Maybe if I just curled up a little tighter I would wake up.  Shit, it's not working.  The sweetest nurses on the planet kept coming in to stretch me back out, reminding me that it will get better.  Jesus it felt like razors on my skull every time someone touched me.  I realize tests must be done but does it require touching?  And for the love of all things that are Holy please take the catheter out!

Time went on, days passed I got to move to a regular floor.  Nurses weren't anywhere near as nice and I was moving more on my own and pain got worse and worse.  When was the pain going to end?  Physical therapists kept bugging me to walk.  Why did I need to walk?  I had brain surgery for Pete's sake nothing was wrong with my feet.  I complied but not willingly.

Finally I got to go home.  Pain was only getting worse, everything hurt.  I couldn't sit, lay down, move my head in any way.  It hurt to blink.  I remember 7 days post op I got the port taken out that was vacuum sealed with packaging tape on the back of my skull and upper back and it hurt so bad and felt so good at the same to get that tape ripped off.  It took skin with it, but no hair cause I only had half a head of it left. I remember seeing blood and then I got to look at the incision for the first time.  It was disgusting.  It was huge, and open and I could actually see my skull which just creeped me out.

Summer went on and well I don't remember much of that summer, I slept a lot.  I cried even more.  I ended up in the E.R. more times than I can remember to this day.  I suddenly became allergic to everything and nothing seemed to calm the pain.  I begged my doctor to help, but there was nothing he could do.  He even brought out the BIG book of medicines and there was nothing in it for me.  That was a sad day....

I slipped into depression.  Every day was a challenge to get through.  I thought seriously about giving up but realized the sheer idiocy in that after all I had been through.  I had to get through it, I had my children to care for.  So I busted my ass to get back to being as much as me as possible.  From June 15, 2012 until September something or other 2012 I did my best and got myself well enough with a shitload of support from friends and family and got back to work, back to being there for my kids, back to my life as much as possible.

Then it hit again, surgery #2 the back.  I couldn't move, walking was damn near impossible, sitting was ridiculous and forget sleeping.  I became miserable, irritable and just a down right bitch.  Back to my dr. I went and it was decided that the only option was to do a fusion.  Apparently my spine deteriorated too fast over the course of my brain surgery and there was just nothing more to do but surgery so on January 29, 2013 it was back on the operating table.  It was a long surgery and the Dr. had to pull my spine back into place, lift it up, fuse the bones back together, put a cage in place and screw it all together with rods and bolts...sounds fun right?

This one I woke up pining for the brain surgery.  I would never have imagined I would long for that day, but I did.  I couldn't move, I couldn't breath, I couldn't cry without my whole body shaking in unimaginable pain.  I couldn't take pain meds because I was allergic to all of it thanks to the brain surgery.

I was sure I was going to pass out from the pain.  I laid there wondering why the hell I did this to myself again.  I wanted to pass out and not wake up for a while so I wouldn't have to handle the pain.

A few days passed and all I did was sob.  I can only remember the pain.  The pain was unbearable.  I kept thinking NEVER AGAIN.  I kept reminding myself this is it, after I'm done healing I don't have to do this shit ever again, I will be all better and everything will be good.  I'll have my 29 year old body back and it'll be good.  Yeah, or not.

It's been 7 months.  I still can't walk for more than a few minutes without having to stop.  I can't lay down, sit down, or generally move without pain.  My whole life has been turned upside down.  All these surgeries and "bad days that were supposed to get better" just keep piling up.  I'm so over it, I can't stand it.

Today I went to the Dr. and I looked him square in the eyes and asked why am I still hurting, why am I still like this.  The answer....this is as good as I am going to get.  I can't play with my kids the way they deserve. I can't run, I can't swim, I can never again go on an amusement park ride, I will always have pain, I will always have migraines, I will always be like this unless some miracle comes along.

I know people say don't give up.  Well people I am grateful for all those thoughts and prayers and positive reinforcement but for those who do not know all I have been through (and most of you do not nor do I have hours to attempt to explain it, and no one really wants to hear it) I have simply given up on optimism.

All of the pain and suffering was somehow supposed to make me stronger and help me in some way.  Sure the surgeries "fixed" the physical ailments that made my body functionally correct.  But my symptoms will never go away, I will always have to be medicated, and I will always have some sort of debilitation.

I am 29.  It wasn't supposed to be this way.  I am not normally a self-pitying person, but today when I was given the "I'm sorry I couldn't fix you" speech from one of the top neurosurgeons in my area it hit me that this really is just the way it is.  I then had to go and turn in my badge to my now former employer because I lost my job due to these surgeries that were supposed to "fix" me.  I knew I wasn't going to be able to go back there but I guess there was always a glimmer of hope in the back of my mind.

On the other side of things there are people far worse off than I am and for many reasons I am thankful.  I have healthy happy children, a loving husband, amazing family and friends and I love all of these people dearly.  As long as I have them I am good.  I really should just suck it up and deal with it all the other shit cause there really isn't anything I can do about it.  But tonight is just one of those nights that I am feeling really down about it.

Once upon a time not too long ago I was told to say good-bye to my family because I was not going to make it through the day, and I did. So in many ways I am thankful, humble, and stronger.  However due to all the things I have been through I am also depressed, worn-out, and angry.

We're taught as children that you grow up, get married, have babies, live in a dream house, have lots of money and live happily ever after.  I must've missed the part when they told you about all the other shit that happens.

I don't really have much purpose for writing this other than to vent and get it off my chest.  Thanks for reading and my apologies for the pity-party.  I usually have these in private.  However sometimes there is just a need to party with others