Let Go

It's been a hard day again, and all you want to do is call up that one friend.  The one you knew you could always turn to.  The one who always picked you up when you were down.  The one who you always laughed with, cried with, and lit the town on fire with.  Your best friend.  Your soul mate. Sometimes you didn't have to call...when you picked up your phone, there would be a text asking if you were "O.K."  That friend always knew when something wasn't right.  Somehow, when your world was crumbling down on all sides, he was always there to save you from the wreckage. No one ever understood your friendship.  In fact, so many people made it out to be something it wasn't.  The way you were so in sync, the way you acted, the way you fought, it all seemed as if your friendship was more of a relationship than anything else.  But in a way it was.  He was always more than a friend.  He was connected to you.  On a level no one else would ever understand.  You were always safe with him and he was safe with you.  There wasn't any bullshit, no drama, just the reality of this life and the curve balls it loves to throw, and you had each other to lean on when it did.  It was good.

As all good things do, things changed.  Time passed, things between you two changed.  The connection was always there but life took you down separate paths.  Before you knew it, years had gone by and not a single word was spoken between you two.  He left for the life he always dreamed of having.  You stayed for the life you always imagined you would have.  There may have been a void in your hearts somewhere along the way but neither of you would ever admit to it.  Too stubborn.

You had a chance to say good bye and you didn't.  You don't regret it though.  You know you couldn't. There was a time when he told you things would never change, yet they would never be the same. Even though it shattered your heart to hear, you knew he was right.  You held on to each other through the times you needed to, got each other through the parts of life that you were meant to, then you went on with your own lives as it was always intended.

But what about now?  When times get tough again, times maybe only he would understand?  Or maybe a once familiar song plays on his radio and you flash through his mind?  Is that all that is left of your soul mate?  It is my dear friend.  It is indeed.  The time has come once again that you need to stand alone.  You need to let go of what you had, be thankful for what you have and have a positive outlook for the future.  You can't control anyone sweetheart.  You can't control much in this world. All you can do is let go.  So mourn what you must, shed the tears you need to, but know they will not be on the shoulder of the friend you're longing to talk to.  He no longer exists.  You know this. You've done this before.  Let go and don't look back.

When he comes into your life again, ignore him. Things will never be the same.  When things get hard as they quite often do, stand on your own two feet and deal with it as you have since the day you parted ways.  You know how to do this.  It's harder each time you fall, it's the getting up, dusting yourself off and remembering who you are that makes you stronger.  Get up.  Get going.  Get on with what you know you need to do.  Let go...just let go

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.

A Glimpse Back, A Glimpse Forward

Next Monday my husband, Tom, and I will be together for 13 years. Wow 13 years.  I don't know how that much time has gone by to be honest.  This May will be our 10th wedding anniversary but next Monday will be the anniversary of the very first day we started seeing each other.

It's funny, that particular day seems like it happened a few years back and yet sometimes it feels like we've been together since the beginning of time and others it feels like it hasn't been that long at all.  I wish the newness was still there sometimes.  That anxious/excited feeling we used to get when we knew the other one would be coming over.  Now that feeling comes along when I know he's coming home and I haven't made dinner yet and I have to throw something together in time.  Not exactly the same thing....

Getting to know someone is always fun and scary and throws a thousand emotions into the air.  It's new and different, but somehow familiar and comfortable.  After all these years it's almost comical because you know everything the other person is going to do, what they will say or how they will react to a certain situation.  You have to keep it interesting I suppose.  It's not for the weary, that's for sure.  

If someone would have told me that the day I met my husband we would be where we are today I would have told them they are absolutely crazy.  If I could have warned myself on some key elements I sure as shit would have and I'm sure he would have done the same thing. Marriage is definitely not easy.  Take those vows as if they are the key to life; "for better, for worse, in sickness and in health" I know there was some other stuff in there too but that pertains to us the most. If we wrote our own I would imagine they would have went something like this; "Eventually you and I will get so damn irritated with each other that one or both of us would love nothing more than to slap the shit out of the other one, but since we aren't the domestic abuse type of people, we'll just bitch for three days and then get bored of it and call it a draw although I will really win because I am now legally your wife and just let you think you won.  You will do your hobbies irregardless of what I want you to do and leave your dirty socks and underwear all over the place, along with dishes in the sink, and not clean up after yourself after you shave.  I will bitch at you about all of the above along with anything else that comes our way including but not limited to; your mother, the dog prints on the clean floor, your mother, your lack of help, your mother, you not spending enough time with me, your mother, the lawn needing to be mowed, your mother, the garage being a mess, your mother, why the Christmas lights are still up in June and your mother.  That will about sum it up, oh and I forgot, your mother. We will constantly fight about our families because we were raised completely different, then we had our own kids and came up with our own way of raising them and neither your mother or my mother agree but your mother always says things to piss me off so I'll bitch some more."

Although if I said that I'm fairly certain he wouldn't have said I Do....Doesn't life sound grand?!  The truth is, I don't actually bitch much..in the beginning I know I was quite bitchy when we moved into our house, but I just wanted it to be perfect for him.  Luckily, that side is way out in left field somewhere now.  We have 2 children, that's where my time is devoted to now and where most of the yelling in the house comes from,  Funny how that shifted.  Here's the good part.....

When the days are crazy, the kids are running in 25 different directions, work is unbearable, our families are arguing, the house is a mess, I'm wearing Tom's underwear because the washer is acting up and my clothes aren't clean.....when life is simply falling down around us, I love him.  I am grateful for the last 13 years and I am hopeful for the next 13.  Yes, there are obstacles, yes, there are issues. There always will be.  We will always fight, our families will never get along, my personal feelings about his hobbies, will not change, his feelings about mine won't either.  Our kids will grow up, and thanks to the lovely examples set forth by certain family members, we know exactly how NOT to treat our children's spouses and their children in the future.  There had to be a silver lining somewhere.

Will we make it to 20 years?  Who knows.  I can only hope.  I would love to be one of those couples who can show their children by example that even in the tough times, there can be a happy ending. If it doesn't work out that way, well I would like to be able to say we tried our best.  I know we would if it came to that.  There isn't a whole lot to look forward to in life these days.  Every time I turn on the TV there is something awful going on in the world and usually in multiple places, growing ever closer to home.  The better life we can make for our family, the better off we'll all be.

Life is hard, marriage is hard, raising children is hard.... but anything worth doing is usually hard.  If you can look at it with a little humor, a little sass and a lot of heart, you'll be fine.  Live it your way. We only go around once...make it count.

Happy Anniversary Tom. I Love You <3

Lucky Enough

Last night I had a typical "night in the life of a parent."  In my house, when my children are sick, sad, upset, hurt, anxious, or in any way unhappy they run to me.  In my house, mommy makes everything better.  Of course when they are happy and content they want nothing more than to run around with daddy.  Mommy gets the happy moments every now and again but daddy just brings out that wild playful side like no other.  Somehow I think there is a bit of a disconnect somewhere but that's alright, as long as they are happy, healthy and taken care of, I'm good.

Anyway last night my husband had to work late, well past the kids' bedtime so as always he called to say good-night.  As I tucked my children into bed and their little faces slowly drop and tears ran down their cheeks because daddy wasn't going to be home for bedtime, I saw that wonderful moment every parent hopes to see.

The two of them, who didn't stop fighting all day long, snuggled into my bed, grasped each others hand and put their heads against each other.  They began to talk about how much they wanted daddy home and how much they missed him.  As I watched from the doorway I realized that the bond my children (secretly) hold is so wonderful and strong and I am so blessed to have them.

They slowly began to giggle and eventually laugh and looked at me with so much joy when I walked into the room.  They asked me to lay with them (as if I would ever decline) and watch a show with them before bed.  As I crawled into bed with them and they laid on top of me I couldn't help but get that little lump in my throat because I was so happy and yet I knew that school is just around the corner so these nights will be far and few between.  I swallowed hard and just let them drift off to sleep while I laid there, covered in sweat and drool.  It was a perfect night.

Unfortunately, a few hours later I was awakened by my daughter who wasn't feeling well. She is getting a cold and her nose was too stuffy to breath through so it woke her up.  She HATES taking medicine so we tried everything but that, which of course took hours.  After about 2 hours of that awful sniffling I demanded she take medicine, she of course wanted to fight me to the death but in the end she conceded.  Wouldn't you know it, 15 minutes later, she was out, and so was I.  Cock-eyed, covered in medicine, and sharing a twin sized bed with my daughter, but out none-the-less.

My slumber didn't last long, 30 mins later my husband woke me up to go lay with my son who had woken up with his alarm.  Great.  Usually when my son is up, he's up for the day.  I begged him to go back to sleep, promising snuggles and as many stuffed animals as he wanted to bring.  He must've sensed the desperation in my voice because thankfully he gave in and off to sleep we went.  It didn't last more than an hour but it was an hour I was very grateful for.

When he asked me to go out into the living room with him I was reluctant but knew that it was time to get up whether I wanted to or not.  The day had begun.  Breakfast and his favorite shows and more snuggle time while his sister slept soundly (thank goodness) in her bed for the next 3 hours.

As I write this now, they are playing, and fighting, and the house is full of toys.  If someone was to walk in here right now they would wonder if we knocked off a Toys R Us.  This is my life, and I love it.  I wouldn't change it or trade it for anything in the world.

Soon they'll be off to school and I will be so sad, so lonely, and missing them so very much.  All the sleepless nights, all the fighting, every tight month because we are a one income family, every hurdle, every hard time....none of it matters.  For everything that seems negative, there is so much more that is positive.  One "I Love You Mom", one smile, one giggle, one snuggle, one look....makes everything worth it.  My children are my life.  I love them with every fiber of my being and I am so blessed to have them.

Even though I have more to say in this blog, my kids wants some lunch, and they come first.  They are the most important people in the world to me.  They are my children, and I am lucky enough to be their mommy <3

Holding on

Time is a funny thing.  There are days that I am running all day long doing errands, making sure every last item on my "to-do list" is done, and being sure my children are getting all the attention they need and want.  Then there are days when there is absolutely nothing on my "to-do list" except little odds and ends items that I know can wait, so I get to spend more time playing with my kids and less time "being an adult."

In the beginning of this summer I thought of thousands of fun things the kids and I could do over their nice long break from school.  Like most other people I know, I went onto Pinterest and found some fun arts and crafts, new games to play, etc. and had all these magnificent ideas on how to incorporate all the new activities with the old ones.

Well here it is, the last few days of summer vacation and we didn't make it through half of our list.  I am really fine with not having a "check mark" next to items on the list, but what bothers me is how quickly the time went this summer.  I know it always does, but this year seemed to go especially quick.

I was sitting in Kindergarten orientation for my son, who happens to be my youngest and I thought about how just 4 years ago I was sitting in the same room listening to the same speech for my daughter, my oldest.  As I looked around the room at so many new faces it was easy to spot the new parents because most of their children were clinging on to them.  My son, although he is extremely attached to me seemed to be very calm at orientation which I was so happy and relieved about, but at the same time I realized I was clinging onto him.  

I am not ready to let go of both of my children and have them be so independent yet.  Some of the parents who were there couldn't have been any more excited about having their child(ren) return to school.  Some parents with children who were going into Kindergarten and were only children or the youngest child in their families had parents that were happy about it being time to send the children to school.  

I don't understand this concept.  In a way I suppose I can see it, if parents are paying for day care, or if they are wanting to return to work without needing to work less hours because of needing to stay home due to a younger child.  Most of the parents I know usually have some sort of financial aspect as to why they are happy that all their children are off to school in September.  

It is absolutely the opposite way for me.  I have been with my babies everyday since birth.  I stayed home in intervals so each one had the same amount of time with me.  I have been a stay at home mom full time since January 2013, and although it is by far the most difficult job I've ever had, it has also been the most rewarding.  

I get to be with my children every single day.  I know every single thing about them.  I have been so very fortunate to have been able to be home with them over the years.  Although my husband and I did take a financial loss when we went from  2 incomes to 1, it was never an issue when we thought of the benefits we were getting in return.  There is nothing better than being able to know where your children are and that they are safe, healthy and happy.  

We definitely had our bad days, I'm sure my neighbors have heard my children fighting and me yelling at them to knock it off, but kids are kids.  Even a tough day at home is better than a good day at work.  

In just over a week and a half I am losing my days full of snuggles, hugs, kisses, giggles and everything in between.  I know it's only a few hours at school and the day goes by quickly, but I'm still not ready to let any of my time with my children go.  I'll even miss the fighting. I need my children as much as they need me.  I feel so lost without them around me.

I know a lot of parents, mostly moms (that I've talked to) who are going through the same thing.  The separation anxiety is already setting in for us.  Of course, being a mom, we have to hide it so the children won't feel it.  We need to be strong for them.  When we tell them what a wonderful time they will have this year, they need to believe it so they can have the confidence to get on the bus or in the car and walk into that school on their first day and every day thereafter.

When that first day comes and all the children are on that bus and waving out the window, I'll be putting on my sunglasses so they won't see the tears and when it pulls away, I will be a hot mess, that's for sure.  Some parents high-five, some smile and laugh that the kids are back to school, I don't. I turn into a blubbering fool. I hate this time of year.

Whether you're a high-fiver or a balling, sniffling, mess like me on that first day, it's always good to take the time we have left of the summer and really engage with your children.  Disconnect from your phone, computer, tablet, T.V., anything and everything else.  Go outside, go play with your children. Give them this last little glimmer of summer, they'll hold onto it longer than you think.  I know mine do, and so do I.  

Best of luck to all the children and the parents this year.  I hope it is a safe and successful year for all! 

:)

Anti-Bullying

With the cooler weather beginning to settle in, the leaves changing, and the stores stocked from floor to ceiling with school supplies, the inevitable is upon us.....Summer is coming to an end.  With Summer ending and Fall beginning, the children, teachers and parents are preparing for back to school time.  Some love it, some hate it.  Personally I hate it, as do my children.  But before all the kids show up at the school bus with their shinny new digs, new backpacks, and anxious grins on their faces, I am going to ask parents for one request; talk to your children about bullying.

My daughter has been bullied for the last 2 years and I have done everything from marching my butt down to the school every single day to talk to the teachers, students, and principal, talking to the mom, taking my daughter to the schools' social worker, taking her to a therapist to talking with school board members, writing a formal complaint, and asking to have an entire assembly on bullying throughout the school system.  Sadly, the school system failed my daughter.  

Although the school has an anti-bullying policy, the rights of the bully were better protected because he has "mental issues."  I of course, did everything I could to protect the rights of everyone involved, after all these are children, and sometimes they just can't comprehend their actions.  I did not in any way shape or form attack or want anyone to feel worse about the situation that what was already going on.  I know the bully probably didn't intend on hurting my daughter so much, but even though sticks and stones can break bones, name calling and bullying can and do hurt so much more sometimes.

Now we're heading into a new year and my daughter has an entirely new personality.  She has become so unsure of herself, has so little self-esteem, and will basically cling onto any "friend" that is nice to her, even if he/she is no friend at all.  We've tried every avenue we could possibly think of. We've gone through the school, therapists, friends, family, doctor recommendations, you name it, we've done it.  We praise her up and down for her good deeds and correct her when she needs it, but nothing too harsh.  We are trying to reinstate her self-esteem as best as we can.  However, the terrible bullying she has already encountered has beaten her down so much that I am so afraid she is going to stay like this forever, or at least until she finds her inner-strength, which she has to find on her own.  We told her it's there, but only she can truly feel it.

Why am I telling you this very personal information?  Simple.  When you are talking to your children about school this year, please remind them about bullying.  Think of your child being ridiculed and picked on relentlessly throughout the day.  Think of his/her little face and the hurt he/she would be feeling, the tears streaming down his/her face.  Think of the anger you would feel when you found out.  Now channel that into a positive conversation you can have about why your child should NEVER bully anyone else and if he/she sees someone being bullied he/she should tell a teacher or an adult he/she trusts.  It is so important to stop this horrible epidemic going on.

I pray that none of your children will ever be bullied, or become a bully, but if any of it every happens, please nip it in the bud right away.  The hurt, heartache and pain that your child will endure can last a lifetime.  

So many children who get bullied will not speak up if they are being bullied.  They are too ashamed, too afraid that they will provoke the bully even more or they will get in trouble for being a  "tattle-tale." So they endure the abuse, silently.  They will change over time.  You will notice they will have a whole new attitude, they will become angry, sad, they won't want to go to school, won't engage in activities at home or in school.  Essentially they will become a hollow shell of themselves, and that is so sad to watch a child go through.  You want your child to be strong, happy, playful, and above all to be a child...live his/her childhood, these other emotions will come in the adult years anyway...let them be kids.

We considered taking our daughter out of school when the bullying began, but what would that teach anyone?  It would teach the bully that he/she could control the population by being mean and picking on everyone.  It would also teach my children that running away would solve any problem.  I want my children to learn to stand up for themselves, face adversity and rise above it.  Hopefully this year they will be able to do so.

These days she has become very angry and impatient with a lot of things that ordinarily she wouldn't be.  I have the bully to thank for that.  However, if she gets mad enough, she'll stand up and argue, so it's a start I suppose.  However she is too young to deal with such nonsense.  

Please, please, please talk to your child about the affects bullying can have on someone and why it is so important NOT to become a bully and to SPEAK UP if he/she sees it or hears about it happening. I cannot thank you enough for helping me to end this and give a voice to the children who will not speak up for themselves. 

Check your schools or communities to see if there are any clubs that have any anti-bullying groups, and if not, start one.  Read your schools' policy on bullying and be sure to know if your child is having an issue, and if so, fight the policy until you get the action you want.  Please don't let any child have one more sleepless night.  No child should lay his/her head down on a tear-stained pillow because they are being bullied so horribly.

Thank you for taking the time to read this and talking with your children.  Thank you for making a difference.  

New Year, New Outlook

I'm not one to make resolutions per say, but this year I decided to get that "fresh perspective" on myself, so I really started to look at things in my life.  I realized that a core problem I have is following through with things.  It's always been a problem area for me and I know it's not something that's going to change overnight, but I'm really going to make it a goal for myself to be better at following through on things.

So, that being said, I've told my story of having Chiari Malformation and frankly I'm sick of it.  The whole damn thing.  I've met some awesome people who also have it, and unfortunately there just isn't a whole lot of light shed on it in this area.  It seems that the only people who know about it are the people who have it, and when they're diagnosed they have no idea what it is.  They're only taught what their particular doctor tells them which is usually very little because not many physician's specialize in this particular disease.

There is a Chiari Institute which is where the experts are, but it's in Great Neck, NY so if you're not living close to it, or have an insurance that will cover your cost of going there, your pretty much out of luck.

Fortunately, there is a whole other world out there of "Chiarian's" which is what people who suffer from Chiari Malformation affectionately call themselves.  There are a ton of support groups out there both online and some in person, but it varies by area.

Last year, I was lucky enough to be able to set one up in my area and I'm so excited to say that we have 26 members which is a lot in my eyes considering I was diagnosed 8 years ago and I met my first fellow Chiarian last year.  Now I have met literally hundreds online and a handful of wonderful people face to face, and it has made a world of difference.

I see Chiari in a whole new way, and 2015 is going to be a banner year, I am making sure of that.  I am hoping to get Chiari awareness spread all over my area so that when people ask "what is Chiari?" a fellow Chiarian may not have to answer, but a supporter may be able to.  Chiari is a debilitating disease, and there is no cure, except surgery, and that in itself really isn't a cure, it may help with the symptoms, but brain surgery is a pretty drastic measure to alleviate symptoms if you ask me.  Not all Chiari's are operable, and some Chiari's can be fatal.  Certain types are fatal, no question about it.

Chiari has a no outside look to it.  No one looks different on the outside unless the surgery was done in which case all anyone can see is a scar.  Often times it will resemble a zipper from the base of the neck up to the middle of the skull and then the "Chiarian" is now called a "Zipperhead" nice aren't we?! Brain surgery is rough.  It hurts, it's so scary, and the possibilities of errors and infections are endless.

However, Chiari is not recognized in NY state nor is it considered "disabling" so sometimes it's damn near impossible to get disability unless you have every doctor, lawyer, judge, witness, etc. on board and even then you may get denied. I am hoping that with a lot of support and marketing Chiari awareness all over the place, we can finally get Chiari recognized, but we'll need the numbers.

This is where we need support.  Support from fellow Chiarian's, support from our families, friends, co-workers, and communities.  Sometimes we just can't function.  Sometimes the pain is just too much to bear.  But with the support of our loved ones, we can make it through.  For 2015 I am challenging people to get educated about this disease, learn how you can help those who have it. While there is no exact number of how many people are diagnosed with Chiari per year, due to more advanced testing, the number of people becoming diagnosed with Chiari has been rising every year. Numbers are estimating between 300,000 to 500,000 per year. Empower yourself with knowledge about Chiari.  Help yourself, help others.  Get a new outlook for 2015, get a new perspective.  Thank you for reading. <3

Have a Healthy 2015!

Nostalgia

Being nostalgic is defined as being characterized by or exhibiting feelings of nostalgia.  Nostalgia is of course defined as a sentimental longing or wistful affection for the past, typically for a period or place with happy personal associations.  Translation: something good happened once upon a time in your life so when you reminisce about it you get all happy and joyful until you realize you're merely daydreaming and then reality slaps you right across the face and says "wake up friend, that was then and this is now."

So why bring this up?  Well every now and again everyone gets sucked into that "remember when?...." phase with a friend or family member and you start going on about "the good old days" and before you know it you're back over a decade ago laughing and joking around.  Then without warning your shoved into reality by a screaming child or a nagging boss.  

Or maybe you hear an old familiar song on the radio from "your generation" (and it pains me to write that phrase) and suddenly you're flashing back to a romantic encounter with that special someone that you swore you'd always be close with.  The song playing in the background, his arms around you, all the right words flowing from his mouth and right into your ear.  It was meant to be, he was your soul mate.  Flash forward a few years, you are no more than a line in a song that he couldn't care less about and you would love nothing more than to take the ball of your heel and jam it into his "manly" parts with more force than a rocket launching into space. Halfway through the song you realize this and have a sudden urge to not only change the station but to throw the radio through the nearest window, watch it fall to the ground and smash into a million pieces.

I spent a great deal of time going through some old photo's and wondering "what the hell was I thinking?!" on numerous topics.  Everything from clothing, to the lack of hairstyles, to who the hell are those people?! However, I have the same core group of the most amazing friends, and we had some incredible times that I will be forever grateful for.  Those are the memories I will always be happy to look back on.  

Everything that I have done, gone through, been a part of, has made me the person I am today. Whether it's good bad or indifferent, I am who I am, and I am grateful for all my experiences. Some people have definitely come and gone and that's to be expected with life.  But as I sat with my dearest friend on my birthday this year sipping some apple moonshine that she had bought for me after a (very) brief taste test I realized that even though there will be times when that ridiculous nostalgic feeling may creep up and I may wonder why this or that happened the way it did, it doesn't really matter.  I have the best people in my life and I am so lucky to have them share my life experiences with.

The power of chiari....

It's been a while since I've written about my chiari, but I get compliments all the time from people when I do or when I listen to other's stories.  So I am writing this for those who have struggled, who are struggling, those who are helping someone overcome their chiari, and everyone in between.

First off, you'll notice that I am not capitalizing the word chiari, being that it is a proper name, it should be according to the "rules" of the Enlgish language.  I however no longer am giving this horrible disease that much distinction or power.  A small and somewhat meaningless action to those who have not suffered from this disease, but if you have, just taking away a smidgen of it's power is worth a celebration.

After I was diagnosed with chiari malformation in 2006 I didn't really think about the toll it would take on my life as I grew older.  Now that I have two small children and have put my body through so much over the last 8 years it has definitely taken quite a chunk out of what was supposed to be the "best" years of my life.

I am supposed to be able to run around (and keep up with) my children.  I am supposed to be able to hike up mountains with my family, to go on adventure walks with other young couples and their kids.  I am supposed to be able to keep up with other people my age and not be drained after trying to clean up my house after my kids.

I am not lazy, I am not having a pity party, but I am also a realist.  I know I am not able to do the things I want to do and it, to be blunt, sucks.  It sucks a lot.  And some days I have myself a little breakdown and a cry fest on my couch apologizing to my kids for being in pain and unable to do the things with them I know they want to do.  Some days are better and I am up moving around a lot better and I can manage the pain a little better and we have a lot more fun on those days obviously.

So, yes I have bad days, yes I have good days.  I take care of my children with all the love and support I can give them and I will always push myself to be the very best for them.  I will never be the person I used to be and that just is what it is.  I have to learn how to forgive myself for that.  The question is how?  Here's a start:

This year I started a CNY chapter for Chiari and EDS sufferers because I feel the best thing we can do is support each other.  I have watched so many purple candles light up Facebook recently and it just breaks my heart each time.  The lit purple candles represent a Chiarian who has lost his/her battle with chiari.   Wether you know the person who passed on personally or not, the common bond of knowing how bad he or she suffered and knowing the amount of fight he or she had to do..... it's wrenching to know that he or she lost the battle, the only comfort is knowing that the pain is over.

The power of chiari is immeasureable.  It takes away so much from those it affects.  Once you are diagnosed, the life you once knew is completely flipped upside down and it will never be the same.  All of the sudden everyone is looking at you different, everyone needs to be tested, people want to start poking you with all sorts of needles, doctors want to touch your brain for Pete's sake!

However, with the power of chiari comes a whole new wave of support from people just like you.  They know exactly what you're going through and they will help you through everything you are going through every step of the way.  You are not alone.  The best thing we can do for one another is support each other. We need to get the awareness out to our communities and let those who are silently suffering know that we are here for one another.  We need to show our physician's that we need the support from them as well.  We aren't just a name/number on a chart.  We are real people with a real disease and just because we may not LOOK sick on the outside, our pain and suffering is very much real.

The pain, sadness, hurt and anger will always come and go.  It is something that will never go away.  I will not say that I don't face those demons every single day.  However, I will not give my chiari any more power over me than it already has.  I am taking back my life and using the negative from it and turning it into something positive.  If you are suffering from it or know someone who is, please know, you are NOT alone.

Losing Battle

"Chose your battles wisely" or so the saying goes, but lately it seems as though the battles are not my choice and I'm not on the winning side.  Everyone has their things they go through on a daily basis, some more severe than others.  Who is anyone to judge anyone else on what they are going through or how they should feel about it.  I know people mean well when they try to make others feel better but if I hear one more preaching sermon from Joe Blow I may just slap someone.  Sometimes I just want to be able to go through the emotions of what I'm going through and let that be ok. 

It's been a few years coming and I knew that I would have to face it eventually but I guess I felt that if I didn't face it right then or really at all, I wouldn't have to do it.  And part of me feels selfish because I have 2 amazing children and there are families out there who can't have their own children and they would do anything to be able to do so and I've already been able to do so.  Although having them didn't come without almost losing my own life, but don't think for a second I wouldn't do it all over again because I would. I would do anything for my children, anything at all.

I always thought I would have one more.  But that is just one battle I am not going to win.  All my doctors have agreed I wouldn't survive another pregnancy or delivery and I can't risk leaving my kids behind.  So I went to the doctor yesterday and I got the call today that the surgery has been scheduled for 2 weeks from tomorrow.  It's official that one chapter of my life is closing and I need to move on to the next one.

In one way I suppose it's something very positive.  It's one more way I can cement trying to be here for my kids as long as possible.  And now that they are getting older we can take those fun family vacations now that they are more independent.  With the two of them I only need to divide my attention between them which is easier than with more children.

In another way, as a woman being able to create a life and have it live inside you for almost a year and have that bond with you is something I just am not ready to give up.  For someone else to make that decision for you just sucks.  For other people to tell you that this is what you have to do instead of you decided your family is complete sort of leaves a void.  I have a wonderful family but it's hard to explain to my children when they ask me why we don't have a baby or why they can't have a baby brother or sister.  To tell them mommy can't and have them ask why not is something they don't understand and I don't go into so I avoid it as much as possible.  Luckily they are easily distracted by something more fun to do or to talk about.  

Please don't misunderstand I am more than happy with my family.  I wouldn't want to change a thing.  I am more depressed that someone else gets to decide when my family is complete, when my body has had enough.  I've fought this battle for so long and so it seems I've lost.  I suppose it's on to the next one....

The Inevitable

I try really hard not to be pessimistic about my health conditions and although I know that humor won't make any of them go away it's definitely something I use to lighten the mood that surrounds the never-ending wake of bad news that follows with each and every doctor appointment, phone call, "episode", etc.

My family and friends ask me all the time (bless their hearts) how I am doing, how I am feeling and if they can do anything to help.  My answer is always the same and always surrounded by some sort of smart-ass comment.  We laugh it off and I always try to revert the conversation to a different topic.  What many of them have figured out by now is that right beneath the surface of my not-so-detailed answer to their question is my massive meltdown filled with anger, pain and resentment that is rapidly rising to the surface.

With each new day comes new trials and tribulations and while each and every one of us has to face them we all take a very different approach in doing so.  But at some point when things get just too much to bear we lose it.  I can honestly say I've hit that point only a few times given my diagnosis's.  The hardest part is that with each new symptom, each new issue, the "I don't know" result from each physician and the inevitable outcome is the hardest pill to swallow.  We all have to face facts that at some point in life our bodies will fail and we have to except our fate.  It's the ride we must take to get there that I'm having the issue with.

Over the last few years I have been through some pretty craptastical health issues as have most people, but the whole purpose of going through all of them was so that I could be around for my children.  I want to raise them, watch them grow into wonderful, healthy, happy adults, be there for them throughout all of their lives. Cheer them on as they play sports, hold them when their first love hurts their feelings, tell them how proud of them they are on the day they graduate, dance with them at their wedding's, help them along as they have children of their own...do all the things a parent gets to do.

Last night after yet another awful "in-explainable" yet "troublesome" issue occurred I laid with my son to hold him as he drifted off to sleep.  Right before he drifted off he turned to me and pulled my arms around him and whispered "hold me mommy, I don't like it when I can't feel you". I buried my head into his back and told him "I will always be here."  But as he drifted off to sleep I sat there and cried because I can't keep that promise.  What if I'm not there for him?  I have no control over what's going on inside my body and at this point my physician's can't figure it out so really it's just a guessing game.  I know what I have already diagnosed but there are so many other underlying possibilities it's unreal.

And what about my kids?  Did I pass these awful things onto them?  It's just so unfair.  I would take everything a million times over as long as they don't have to have one ounce of this.  I wouldn't wish any of these things on my worst enemy, let alone my very reasons for being.

I realize this is a pity party, but today is just that kind of day.  I know that there are people out there who are far worse off than I am, and to those people I can't imagine how you do it.  I don't need, want nor am I looking for sympathy with this blog, this is just a way for me to get out some of my feelings.  I always get so many compliments on how strong I am, but really it just depends on the day. Some are better than others as you can tell.

I hope for the best for all but I'm realistic as well.  I supposed I could end this is on a lighter note since this is definitely NOT one of my more favorable blogs....the snow has stopped here in good old NY and I'm guessing every school that has closed is probably really pissed right about now.  Happy snow day to all the kids out there if you have one today :)

My Chiari Story

So as many of you may now know I am in the process of starting up a new chapter of a Chiari Malformation Support Group in my area.  I am doing so because I am a "Chiarian" as we are often called because I suffer from a brain malformation.  I figured since I am going to start this chapter in my area I would share my story with everyone from start to finish.  It's a long one, so get comfortable and if you are a sufferer please consider commenting, joining one of the online communities I am happy and proud to be a part of ( I am not going to post the links at the end of the blog for privacy reasons but if you would like them, message me) and get involved with others who are going through the same thing. Believe me the support of others makes all the difference in the world.

Well to begin, my name is Jen and I was born in July 1983.  I grew up in a very small town (one I like to call po-dunk USA) population 6 (not really).  I had a lot of friends which looking back I wish I took better care of some of those relationships because as much as I would like to say I was a stand up gal back then I know I wasn't.  But we live and learn and we all go through it.

I was a cheerleader, a band geek, definitely not one of the "smart" kids but not labeled "not-so-smart" (to my knowledge) either.  I was average.  Never the center of attention, never the back of the pack, always in the middle.  That's where I liked it.  High school was blur, college a joke because I went to community college and then a business school where I did graduate with a 4.0 and on the Dean's List but I didn't go to my graduation because I didn't feel like it.  Nice huh?!  But that's who I was, carefree, did what I wanted and didn't have much to say about it.

In 2002 I met a wonderful man through mutual friends named Tom.  I was working at Wal-Mart at the time to help pay for school and have some fun money (not much) and it didn't take long for Tom and I to hit it off and fall for each other.  Within a few years we were engaged and by May 2006 I had a new job and a new husband.  Life was great!

We decided to start a family right away and by September 2006 I was pregnant :)  What a wonderful, and fulfilling point in my life.  But the joyfulness didn't last long.  I was getting such severe headaches, vision and balance changes and unexplained heart palpitations that my OB/GYN sent me to a Neurologist and Cardiologist by my 4th month of pregnancy.  

A magnetic MRI was conducted for my brain and it was determined I had a Chiari Malformation.  A who, what now?!  I never heard of such a thing.  Then of course I went to the Cardiologist and got the news that I had Super Ventricular Tacchycardia (SVT).  Oh great another ailment I knew nothing about and couldn't treat while I was pregnant but one that could make me drop on the spot.  Don't freak out the preggo chick!

I was immediately taken out of work and placed on strict bed rest and the baby was monitored very closely. My blood pressure kept spiking, my potassium kept bottoming out, and I retained more water than the Hoover Dam.  It was a a nightmare.  I ended up with Pre-eclampsia, Toxemia, and if it was pregnancy induced, I got it.  The pregnancy was very rough and I was given a 50/50 chance to make it through the birth so a C-section was scheduled and on June 1, 2007 we welcomed our little girl into the world.

My symptoms of pre-eclampsia disappeared over time but the Chiari and SVT symptoms kept getting worse and worse.  I was warned not to have any more babies as it would be a huge strain on my body, but I don't listen well.  So I took the chance and in 2009 we were pregnant again.

This time the pregnancy went great, no problems I was able to keep up with my daughter right up until the day my son was born.  However, the day he was born was the beginning of the end of all things going well up to that point for this gal's body.

My blood pressure spiked to 240/140 on the day of my 37th week of being pregnant, I was rushed to the hospital and admitted.  I had a boatload of protein in my urine, I became toxic, I had NO potassium or magnesium in my body so they did an emergency C-Section.  Before I went up I was told to call my daughter and say good-bye. It was the worst phone call I ever had to make, and of course I didn't tell her what was going on, she was only 2 at the time.  I just told her I was going to have her baby brother and she told me she loved me and I was so scared I would never see her little face again.

The doctor pulled my mom aside as my husband was racing to the hospital and asked her which one of us she wanted him to save because neither of us (my son or myself) had a chance of surviving.  I had less than 20% and I didn't get the number he gave to her for my little man.  So scared to death in I went to deliver on October 9, 2009 And to this day I have no idea how, but we both survived and my son had no issues at all other than being small.  Thank GOD!

After we were all home and settled I was rushed back into the hospital with high blood pressure again and re-admitted.  All these specialty doctors were called in, and I was told I had to be on Magnesium IV bags to stop my body from seizing because I was so close to stroking out.  Why was my body this?  What weren't they telling me?  

After an extended stay in the hospital and a lengthy stay on my couch I went to work with doctors.  They tested me for EVERYTHING!!!!  It all came back negative.  To this day they don't know what happened. Al they know is it's definitely no more babies for me, because my odds of surviving another pregnancy and birth are slim to none and I will not leave my babies.

So what does all this have to do with Chiari?!  Well I found out I had it because during pregnancy you aren't supposed to have headaches, but the increase in blood that your body produces due to pregnancy created more pressure in my head and neck because I already had a blockage of brain fluid and blood due to my Chiari but that was never discovered until I had a flow study done in 2009.  I could have and probably should have had a stroke with either one or both births.  It's a true miracle that I did not.

I had a Cardiac Ablation in 2010 to cure the SVT but they found I have A-Fib while they were ablating that so now I live with A-Fib.  I had the Chiari Decompression surgery in June 2012 but my symptoms are back with a vengeance so I'm looking into a possible second surgery with my Neurosurgeon. I had an L5-S1 back fusion in January 2013 because my spine is deteriorating and I had massive herniation and nerve damage and although the fusion itself worked to bring my spine back in place I have too much scar tissue around the fusion and my spine is still deteriorating so unfortunately the pain is still with me.  I have some spinal spurs in my neck and I am a class 2-3 for my neck curvature deterioration.  I am looking into being tested for EDS syndrome which thanks to the WONDERFUL online support groups I have just learned about.  I really believe that could be the root of a lot of my pain and problems.

 Day 1 Chiari Surgery

Day 7 Post Op

Day 8 Back Fusion Post Op

This is an abbreviated (believe it or not) version of my story.  I am hoping it will help someone along the way to show that if you are going through something similar or have similar ailments, you are not alone.  There were days I wanted to give up.  I seriously wanted to end it all.  But my children are my life and I went through these surgeries and I am fighting so hard to be as "normal" as possible so I can give my children the best life possible.

I am frustrated that I cannot go to work anymore.  I am allergic to so many medications that I break out head to toe in hives so my pain medication is essentially tylenol (tic tacs) ibuprofen (mentos) and some pain meds that my pain management physician has tried.  But a lot of those I am allergic to also or if I'm not allergic to them they make me spacey and it's difficult to focus.  I can't ask an employer to give me special arrangements because I have ailments, that's not fair to those who don't.  It's also not fair to have to live like this.  But so many of us are and I believe that with the support of others we can fight back against the depression, the anxiety, and the disease itself.  

Sometimes the pain is enough to make you crazy.  You look completely fine on the outside but on the inside you're dying.  People judge you because they have these awful diseases that they are going through and physically they look sick and to them you almost look like you're faking.  It makes me angry and sad because we aren't faking, we aren't lying, we are hurting and we don't wish any pain on anyone we just want the pain to stop for everyone.  

That's why starting this group is so important to me.  My story has a lot of details, the intimate details missing, but you will find that I blog a lot of those when the time is right for me.  Sometimes the days are too much to bear and other times I am just grateful to be on this earth with my kids.  My story is far from over and I am interested in hearing more of my new friends' stories.  I hope that I can support everyone the way you have all supported me.  

From my family to yours, thank you all for listening.  Hugs and prayers to all <3

Chiari Malformation - Dealing with the pain

As most who read my blogs know I was diagnosed with a Chiari Malformation in 2006, I had the decompression surgery in 2012 and although the surgery itself was a success as time presses on my symptoms have been coming back as many "Chiarians" as we are affectionately called have experienced, except once the surgery is done the symptoms come back stronger.  Fantastic.

So if you have a Chiari you know the pain I am talking about, if not well you will not fully comprehend the pain because it really cannot be described.  It's a pressure like no other, a migraine times a thousand, your brain feels like it's on fire, your neck is always in a knot and your spine is always out of alignment and that is on a good day.

It sounds a lot like I'm whining and perhaps I am a bit so I apologize for that.  Moving on.  I have joined a bunch of online forums and online community support groups and I cannot believe how similar the stories are and how much support I feel and how I feel I can support others.  So many men and women who haven't had their surgeries yet and are so scared to do so.  I think back to mine and remember feeling the terror, wondering if I would survive at all, worrying about CSF leaks, all the details....it was so overwhelming.

Now listening to these people I can share my story and actually help to calm them.  What to bring to the hospital what not to worry about.  I know that down the road I'll need another surgery so I ask what to so with the second and third one and how these people handled theirs.  A terrifying thought but none-the-less things I need to ask.

Of course every now and then someone puts up a picture of a lit purple candle to signify someone lost their battle with Chiari.  Although this disease does not have the mortality rate as some other diseases it can take your life just as quickly.  It's a harsh reminder of the reality that is only skin deep.

Not every post on these forums are sad or scary.  Some are happy and light.  One woman posted how she wasn't a "zipperhead" as we are also called because the scar looks like a zipper on the back of your neck if staples are used but in her case her surgeon used glue and dissolving stitches.  I'm excited because it's been a year and a half and my once completely half shaven bald head is now fully grown in and the same length.  My hair dresser just cut it yesterday and for the first time since I had the surgery she didn't have to get out the buzzers or put the other half of my hair up and she said it's finally grown in.  I realize it sounds petty and vain to some people but to walk around for a year with people staring at you wondering what disease you have really eats at your self esteem.  So small victories.

Now it's dealing with the pain.  The constant migraines, neck pain, back pain, vision changes, balance changes, medication changes and all the fun crap that goes along with Chiari that was supposed to be gone for a while but now is back with a vengeance.  Am I going to bitch about it?  Probably, a little bit.  Am I going to break down and cry?  Occasionally.  Will I curl up in a ball and ask why me?  Once or twice I'm sure.  But will I get up and keep going?  You bet your ass I will.  I kicked it's ass once, I'll do it again.

So to all my fellow Chiarians out there, it sucks a lot to have it, it sucks even more to deal with the pain, but we are strong, we are fighters and we can beat it.  My advice is to join some online communities if you haven't already, get involved if you have a support group locally.  If you haven't looked into a Neurosurgeon already, get all the facts and get at least 2 opinions on your case.  It's a hefty decision and you should have all the facts.  Best of luck! <3

Childcare

What is a parent to do when it comes to childcare?  You have children because you have decided at some point that you want to be a parent, which means raising a child from infancy to adulthood and beyond. However in order to do so you need to not only teach them how to be a good person and have good values but also give them necessities like food and clothing, etc. as well as things they want like toys and what not without spoiling them rotten so they become bratty.  Being a parent is without a doubt the most difficult job in the world and by far the most important.

So with such an important job how is one supposed to raise a child and at the same time pay for a child? Let's examine this shall we?  You have a baby, you are overwhelmed with joy and scared out of your mind because you have no idea what the hell you are doing.  Suddenly you have to take care of this little human who is relying on you to keep it alive, no pressure.  Luckily for most your instincts kick in and you figure most things out.  You run on no sleep, no shower, barely any clean clothes and no food for yourself.  That beautiful baby however needs diapers, clothing, formula and those items add up to your grocery bill for yourself for the month.  You start wondering how you are going to make it and how you will pay for childcare which is a whole other ballgame all together.

You somehow make it through and it's time to go back to work.  You find a suitable sitter that you are comfortable with but as per most childcare providers it cost $$$$$.  You realize you are now just working to pay for childcare and pay your car payment.  But you have to work right?!  I mean you have a baby. You start looking for another job to pay the bills, but now who is raising your baby?

This is a common problem that so many people are facing right now and so I decided to blog about it.  I myself have 2 children who are school age but I went through the same thing.  We did things a little differently and had family members watch our kids but it definitely wasn't free and it still wasn't the best option because we didn't have kids for other people to raise them.  

It's a constant battle that so many parents are facing and it can be so overwhelming.  I am absolutely no expert on the subject and to this day we wish we did things differently but I can honestly say if you are stressing over childcare you are not alone.  Talk with some friends or other moms about their childcare options and how they handled or how they are handling their childcare.  Sometimes you find a better option for your family.  You can never be too careful with your kiddos and you always want to do what's best for your family.  

One Great Phone Call

Today I made a phone call, one in which I was very nervous to make.  I called another mother to tell her how her son was picking on my daughter and how I needed her help in making it stop.  I had already emailed her and even though I thought my email was polite I was very nervous to call this woman whom I do not know and talk to her.  I mean who wants to be told by a complete stranger that your child is not being nice to another child.

I was expecting the worst, a cat-fight for sure along with some swearing, definitely a few "F-bombs" but to my happy surprise a very sweet voice answered the phone when I called and we began a very productive conversation.  Within a few seconds this woman on the other end was apologizing up and down for her little boy's behavior.  She began to cry and tell me her story behind her little boy and how he too gets picked on for issues he has and how she has been on the same side I was describing to her so she completely understands and how grateful she was for me for not only telling her about what was going on but more importantly not yelling at her or attacking her son and being understanding of him.

As she sobbed to me she was telling me how she thought I was an excellent mother for bringing this to her attention and how she hoped I didn't think she was terrible for not having a better solution for this particular problem.  I felt myself feeling so bad for this woman as she told me she has been through this so many times. I want this issue fixed but I also want to help this woman to help her child.  I found myself asking her if she would like to get together to talk.  It was a moment of mother to mother trying to do anything to help our children.  I am actually looking so forward to meeting her.  I am hoping that with this new found knowledge and uniting with one another we can help our children better understand each other and get along.

I felt absolutely amazing after our conversation and I think now knowing what I know maybe we can help each other and help our kids together.  I don't want my daughter to get picked on, absolutely not, but I also don't want to see the little boy suffer either.  I wish the world was different but since it isn't, maybe we can help one another out once we get past the barriers.

I learned a valuable lesson today.  And I am so thankful I wrote that email and even more thankful I picked up that phone and she was willing to talk about it.  There is some hope in this world :)

Holiday Cheer

Well tomorrow is Thanksgiving and just like every other year everyone who celebrates is either running around crazy trying to prepare for the upcoming holiday's feast or planning their trip(s) to their selected stores to get this years deals on the biggest shopping day of the year, "black Friday".  Perhaps others are traveling to loved ones houses in a different part of the state or country, and if so, I apologize right now because we all know how much fun airports, bus and train stations can be and of course rush hour on all major high ways the day before a holiday.  So let's break this down a bit shall we?!

First: if you are preparing the meal: it is a royal pain in the ass but let me be the first to tell you, the people who are eating it are beyond appreciative of it or at least they should be.  It is an insane amount of work and it's over in about 20 minutes and then the clean-up takes another hour and a half but those 20 minutes are pure bliss.  For those preparing the meal, you are amazing and thank you for doing so.  I did it last year and unless I absolutely HAVE to, I am so not doing it again anytime soon unless I move into a bigger house with a much bigger kitchen.  For those eating the dinner you did not prepare: do the damn dishes!

Second: if you are planning to go black Friday shopping, do not be one of those people who beats the shit out of someone else over a $5.00 savings on an iPad because in a week it's going to be cheaper somewhere else.  You want a $5.00 savings but if you get arrested now you're going to have to pay for a lawyer, court fees, spend some time in jail, etc.  Now ask yourself is it really worth it?   I think not.  Don't be THAT person.

Third: if you are traveling for the holidays no matter by what mode; plane, train or automobile please be considerate of other people.  There will be delays, there will be traffic and there will be that family with that screaming kid right next to your seat on the plane or train.  There will be no need to say some nasty comment about them or about how the workers are so slow at getting your baggage from point A to point B, remember they are working on the holiday's too.

Above all let's remember that it is the holiday season and for whatever reason instead of being holly and jolly at some time or another we all turn a little grouchy.  You may notice a slight sarcasm in this blog, it's there for a reason. I am hoping that this year we can all turn a little naughty into a little nice.  Maybe if we see someone having a bad day or going through a rough patch we could lend a hand to help out.  A little holiday cheer never hurts :)

Happy Thanksgiving to all :)