She's....

You pass by her every single day.  Maybe you smile at her, maybe you say hello, maybe you don't acknowledge her existence at all, maybe you're not the first to ignore her. She goes on about her day, each one coming and going just the same as the last.  Nothing changes.  She doesn't move forward, she doesn't fall back, she just goes through the motions of each and every day because that's all she can do.

To most people, she is just like any other woman.  She is busy of course being a wife and mother and trying to keep together the unruly schedule that is her life.  Some wonder how she does it with so many places to be and so much going on in her life.  She always seems to have a smile on her face even in the most chaotic of circumstances.  What they don't see is what's behind the smile. 

No one takes the time to really look her in the eyes.  If they did, they would see all her pain.  They would see right through her plastered on smile and "keep it together" attitude to find that she is actually quite broken inside.  They would see that she is lonely, so very lonely.  They would see that there really isn't an ounce of who she really is left in her, even she doesn't recognize herself when she looks in the mirror,

Why does she hide?  Why won't she just open up?  What is locked inside so deep that she has changed who she is altogether?  She'll never tell.  She has no one to tell it to even if she wanted to. Life has gone down too many unexpected roads.  She made the best of what she could and now she just locks away the rest.  

She's tired.  So very tired of standing in the shadows of all those around her.  Tired of having more people look through her than at her.  Tired of being that someone who is standing in place of someone else because she is the one that is "good enough" but doesn't compare to "the one that got away."  She can't fight anymore.  She can't remember what she started to fight for in the first place and it's been so long since anyone fought for her that she finally decided it was time to give up.

She's sad.  She's sad that no matter what she does, she will never be good enough.  She will never get the answers she has been longing to know for such a long time.  She knows that in time, she won't even be a memory because she just doesn't mean that much to him.  She watches him watch other women,  She knows she can't compare to them, but she tries anyway.  He never looks in her direction. She listens to his stories about everything else that makes him happy, but for some reason she can't make him happy, no matter how hard she tries.  

She's lost.  No one seems to be around anymore.  Everyone has gone on with their lives and here she sits.  She has no one to talk to, no one to support her.  She cries.   She knows her only mission in life is to be the best person she can be, and it's just not good enough.  

She's worried.  If the world can ignore her.  If she is not good enough for even one person, how will she be able to be the role model her children deserve?  How will she show them strength and values when the world around her constantly crashes down? 

She's aware.  She knows she isn't beautiful.  She knows she isn't the ideal body type.  She knows she isn't the most intelligent woman in the world, but she can't help but wonder why just one person can't see her as better than what's on the outside.  She knows she'll never be the woman who walks into a room and is able to turn anyone's head, although just once she would love to know what it feels like for someone to tell her she is beautiful and know they truly mean it.  She knows that she will always have to love someone more than she will be loved, and once upon a time she thought that would be enough.  Turns out, it isn't.

She's hurt.  She stays up all night and mostly cries to herself.  She wants to badly to be with him.  But he doesn't want her.  He'll never want her.  Not the way she wants him to.  Maybe she needs to give up on that too.  She doesn't want to be "free" but she doesn't want to be burdened every night either. Why could he not see her for something more?  Why is it always about him?  Why does it have to hurt so much?

She's losing.  The battle that arises each day within herself only grows.  She knows the right thing to do, but she hasn't had the nerve to do it yet.  She's holding onto something so desperately that has let her go a long time ago.  She needs to concentrate on her children and herself and nothing more, yet she can't let go.  Each day she loses a little more of herself to this.

She's empty.  Her heart is full of secrets and her soul is full of scars.  She has nothing left to fight with and nothing more to offer.  If she wasn't good enough to begin with, she's no where near good enough now.  She knows her life is nothing more than what she knows it to be.  She needs to stop pretending it could ever change.  It's time to hold on for dear life and let go.  

Just Because

I'd like to address an issue that has been bugging the hell out of me for quite a while now.  Since it's 4:30 in the morning and I've been up for hours and I'm feeling a bit little bitchy lets just do it now. Enjoy :)

I am a 33 year old woman.  I have been married for 10 years (Tom), have 2 beautiful children (Katie 9, Brian 7) we have one dog(Joey) and live in a housing development just outside of town and have so for over 11 years.  My husband works and I am a stay at home mom.  To so many my life seems pretty ordinary, probably pretty boring.  Well that's ok, that's your opinion.

I happen to be a mom who likes to have fun.  We play all day during the summer, go on the boat (swim, fish, ride, etc.) on the weekends and some evenings during the week, we go to the beach and meet up with friends and everyone just hangs out and we play in the water with our kids.  We go for hikes, walks and "adventures".  We bake muffins and cookies at random times.  We bust out a pajama day in the middle of the week just because.  We get dessert before dinner, etc.  These things we don't do all the time, but they are just a few little things we do to keep things fun and interesting around here.

Since I am not exactly the "traditional" mom type, why in the world would it shock anyone if I dressed like one?  I buy my clothes in the Junior section at every store I go to.  I still wear either hip hugging or skinny jeans and it's mostly tanks and t-shirts for this girl unless it's winter then it's usually leggings and a shirt.  

I may be a mom but just because you are a mom does NOT mean you strap on your granny panties, pull on some "mom jeans" that make your ass go on for days it seems, then throw on a shirt that says "World's Greatest Mom" just because it hides that fact that your once perky rack is now capable of being a hacky sack set.  

Oh and it's OK for parents to have tattoos people. It doesn't mean we beat our kids or drink and do drugs.  In fact tattoo's are nothing more than pieces of art on a canvas.  The canvas just happens to be skin.  I can see if a parents' tattoo said "Go F*ck Yourself" then yeah, maybe cover that one up for the school Christmas concert but otherwise be who you are. 

Another thing is if you see a mother in a bathing suit just do us all a favor and shut the hell up. Whether she is big, small, covered in stretch marks or doesn't have one just shut up.  Growing a human being and then birthing that child is truly amazing and only a woman can do it.  She should be proud of that.  Of course  having a baby is going to change her body...hello it's a HUMAN GROWING INSIDE ANOTHER HUMAN!!!  Get it now?  So if she decides that wearing a bikini even though she has some pudge on her or her belly looks like she was mauled by a tiger, you give her respect.  Especially if she's the mother of your children.  

As a mom, it gets really overwhelming sometimes.  You literally lose yourself completely which is hard enough.  The hardest parts come when someone else judges you for something stupid and suddenly your whole perspective is thrown off because some jackass has an "opinion."  Then you question everything about yourself,  Your looks, personality, how your parenting type is affecting your children and where the hell you belong besides with your kids.

Enough already.  Life is hard enough.  Being a good mom is the most important thing in my life and in so many of my friend's lives.  So if I or anyone of my friends want to go to the beach in a bikini and we just happen to have a belly that has stretch marks well too damn bad, don't look at me if it bothers you.  If I want to wear a shirt that just so happens to fit me and my daughter then that's my decision, not yours.  If I go for a walk in my short shorts and tank top with my hair all a mess, well I guess that's just ok now isn't it?!  If I am shopping with my children and I am looking for new jeans and I'm in the Juniors section don't give me that "what she trying to do be a teenager again?!"  The answer is no, I'm just wearing the clothes you want to be able to wear when you're my age sweetheart.  

And that folks completes my don't piss my off anymore especially when I'm wearing my bitchy pants at 4:30am blog.  Thanks for reading.

How are you??

A common question, we ask it a hundred times a week, we get asked it back a hundred times in return.  Most of us don't think much about the reply, "good, you?" "fine, thanks", answers like these are all answers that just seem to roll of our tongues.  However, you ask someone who has a Chiari Malformation about how they are you're likely to get one of two answers....a candy coated fib "I'm doing ok, thanks" or something a little more truthful like "completely shitty, but thanks for asking." To a Chiarian, asking "how are you?" is like opening up a can of worms in the nest of brand new baby birds and their mamma....it's going to be messy.

So many people want to know what it's like to be a Chiarian.  Well, to be frank, it sucks major ass. While eventually you find yourself in contact with fellow Chiarian's who can understand what you are going through, it in no way puts you in some fancy-shmancy exclusive club.  It just helps you find more support and relate to others like you. But even with those people you still feel completely alone with this horrible, God-awful illness that is absolutely invisible to the rest of the world except of course for the enormous scar that looks like a zipper that runs from the middle of your skull to the base of your neck and then some.  People look at you as if you are lazy.  Doctors call you "crazy" tell you it's all in your head, until of course they actually take a closer look and physically see that yes, it is in your head, except all the parts that should be in your head, are not.  That's the problem.  It's an illness that is both debilitating, frustrating, and can be fatal.  Yet to some, it is easy to look the other way because those who suffer must be faking because we don't "look sick."

There are so many horrible diseases out there, not one is any better than the other.  They all suck.  I wouldn't wish any of them on my worst enemy.  Some of them your body tries to fend off with white blood cells or your immune system will attempt to kick in, in some way.  With Chiari you are literally fighting a war against your own body, against your brain, the very thing that controls your body functions.  It literally seems impossible to win.  Every time a new symptom comes up you wonder will this be the one that will lead to something I cannot beat?  Will this be the one that kills me?  I cannot tell you how many purple candles I've seen go up, how many angels gained their wings, some too little, too young, that should never have had to deal with this sort of thing ever, but especially not this young.  This disease, much like all the rest, just sucks.  Did I mention that?

As a Chiarian, especially as a woman, I worry that I've passed this ridiculous disease onto my children.  I pray every single night that I did not pass this onto my babies.  I will take everything this horrible disease has to offer, everything every horrible disease has to offer as long as my children do not have to suffer one moment of any of this nonsense.  It's one thing to know that you have to undergo these surgeries, that your doctors will literally be poking around in your brain multiple times in your life, that other parts of your body will be affected by this damn disease, that you could develop other diseases thanks to this one.  The last thing you ever want is to think your children would ever have to face the same thing.

It's bad enough that thanks to this suck-ass disease you no longer can play like you used to, you have no energy, your body, no matter what it's age is actually acting more like someone 20-30 yrs older than you.  Your memory sucks, your attitude sucks and of course your "get up and go" is now "get up and sit."  Having children young was our plan so we could grow up with them...be able to play with them, run with them, go on vacations and act like children right along side them.  Thank you Chiari for ruining that plan.  To see the look on my children's faces when they ask me to play and I physically can't move because  my migraine is so bad, or because the pressure in my back/neck is just too much, or because my tailbone popped back out of place, they don't need excuses...they need their mom back.  I need my body back.  Doing the surgeries didn't give me symptom relief, just made new ones and now I'm facing more....and I just can't do that again.  I just want to be with my children.

So, how am I?  I suck.  Chiari sucks,  I am not lazy, my house is cluttered with toys but it's clean. I am not crazy and I am "sick in the head" my brain is "leaking" out of my skull.  I don't feel good, but I'm not contagious.  I'm not in shape, but I can't work out, I will literally break my ass.  So to judge me just sucks.  Walk around in my shoes for a while and then pass judgement.

So to sum up, I really had two reasons for writing this blog.  One, I just needed an outlet.  Some of it may seem a bit sappy or whiny and for that well I'm sorry.  Actually, I'm not because I don't ever talk about this with anyone and this is my outlet so I'm sorry I'm not sorry.  I'm having a bad night and had no one to talk to.  So if you're reading this, you're now my therapist.  Congratulations and I'm not paying you.

The second reason was because I would really love it if the next time you see someone who is walking around with purple hair, dressed in nothing but comfortable clothes, talking to you about how they aren't feeling well, or the next time you see someone park in a handicapped parking spot (as long as they have a sticker) and they may look young or may look like nothing is wrong with them...give them the benefit of the doubt.  You don't know what someone else is going through, what they may be struggling with or what disease or illness they may or may not have. Perhaps they are showing support for someone else.... Instead of judging, maybe ask them if you can help them.  You wouldn't believe how much a simple smile or nice gesture can make someone's day instead of a snicker or snarky attitude.  I am guilty of it myself....I've judged others in the past as well...but now I simply ask "how are you?"

Change - it sucks

Change is going to happen.  Whether we like it or not, it's going to happen.  Sometimes it will smack you in the face like a ton of bricks, sometimes it will be subtle, sometimes you'll notice that you've already had a change happen and sometimes you have to be the one to make the change no matter how much it's going to tear you apart.  Change is the necessary evil that makes this often times ridiculous world go around.  In so many ways I wish it wasn't, but either we roll with it or we get crushed by it.

When we were kids we couldn't wait to be older.  To stop being treated like a "baby", stop watching all the older kids get to do the things we wanted to do but couldn't because we were too little, to just taste that freedom, just a little bit.  As we started to get older it was a bit scary to know that we had that freedom, to go out and do those things, but it was so fun to finally be able to do those things we had always been held back on.  

Then we grew up even more and reality set in.  With growth came responsibility, bills, jobs, relationships and although it was tough to adapt to that new lifestyle it was interesting to never know what tomorrow held, all the new people we met, the new adventures we took, it was still scary but wonderful.

We grew more, more change, more responsibility, more "adult" things came.  Suddenly being treating like a "baby" sounded pretty great.  Except now, we were the ones taking care of our own babies. Where had the time gone?  How the hell did we go from these little kids to teenagers, to young adults, to an actual adult?  What happened to all the people that came and went?  Where the hell are they?  What happened?  Did the earth shake and a bunch of them fell off?  No, we all changed.  It happened every day and we didn't see it or didn't accept it.

So here we are, adults, well isn't it just all it's cracked up to be?  Freedom, sweet freedom.  Well what a bullshit lie that was.  Thanks Disney, where the hell are all the little dwarfs to do my housework? Where's my knight in shining armor?  And what the hell happened to my castle?  Way to build it up.

So far in life either from experience or from friends' experiences if any of the Disney shit happened here's how it turned out: 

If the little dwarfs showed up, they cleaned the house top to bottom and by that I mean cleaned us out.  Everything from the jewelry to the paintings even the damn wooden spoons.  Who needs wooden spoons? 

If the knight in shining armor reared his beautiful (yet pissy) head he stayed a while, turned on the charm got us hooked, then turned out to be the biggest asshole this side of the Mississippi.  In the end it was a nasty divorce, he used every dirty trick in the book including trying to take the kids so we pawned his armor and blasted his ass all over FaceBook.  Now he pays us 1/2 his paycheck and we absolutely hate each other.  He needs to go back to the beginning and learn how to be a knight.

If we bought a castle, it turned out to be a Ryan home in disguise, so everything is falling to shit, the ceiling leaks, there is no insulation, the water pressure sucks, and I'm sure Goofy did all the measuring and nailing because you have to slant your head to the right for anything to look straight.

I'm so positive aren't I?!

So let's say for shits and giggles that you are still at that point in your life where things are changing (because they always will) but you haven't settled down yet.

Are you in a relationship that makes you happy?  If not are you going to stay in it just because you love that person or are you going to cuts the ties because you deserve better?  My advice would be to cut the ties and move on.  If that person doesn't treat you right now, trust me, they are not going to change in time...not for the better anyways.  As much as we want to, we can't change people.  Only people can change themselves and 9 times out of 10, they won't.  If the world is going to change anyways, if everything around you is going to change, why not make the change that will make you happy?  

Are you in a career that makes you happy?  Are you only in it because it has "growth potential"? What good has growth done for you so far?!  Do what makes you happy.  Follow your passion. Yes I know "passion doesn't pay the bills", but if all you're doing is working to pay the bills, to stay afloat, where is the joy in your life?  You're living the day to day just to get through it. What kind of quality is that?

Who the hell am I to tell anyone what to do?  I am no one.  You obviously don't have to listen to a damn thing I say. As I say in many of my blogs I write because it makes me feel better.  Sometimes I just need an outlet.  If I said half the shit I really want to say (or posted half the blogs I have written as they are) I would most likely be reported, banned, and have a lot of "splainin'"to do.  Sometimes it's good just to be a smart ass and say what you need to say, even if no one is listening.