Trust

Trust......

Such a small word so simple and yet so full of meaning. To everyone it has a different depth of meaning. And for each person as they look upon those in their life the word trust evokes a different feeling.

We have those in our life that we trust implicitly without question, without doubt, without reservation. Those people are a rare find and when found we hold onto them with both hands and our whole heart. Some people never find that person, ever. I have thankfully.

We have those people in our life that we have grown to trust, the people we take a deep breath find our faith, bare our souls to and trust because without that leap of faith life would be a far lonelier place. These people aren't easy to find either because finding them means having faith in yourself that you can make a sound decision I have a few of these people in my life and I'm grateful for them my life is far more full with them than without them.


We have those people we used to trust but no longer do. They are still in our life, still part of our present, still part of our now and most likely still part of future but never part of our circle of trust. They are on the outside a reminder of why trust is so sacred, of how trust can be broken, of how it can be abused. Trust is fragile something to be nurtured, it requires give and take, or like anything else it dies. I also have these people in my life. I could force them out of my life surely but it is a far better thing to keep them here as that reminder to be mindful, watchful and ever careful with my trust.

The most important trust of all, is the deepest kind of trust. Trusting yourself. Listening to the voice inside of you. This is the hardest trust to obtain. Before you can trust yourself you have to be brutally honest. You can't lie to yourself and still trust yourself. Trusting yourself doesn't happen overnight. I'm working on it have been for some time now. I've found that on the road to doing so you think you're there and suddenly a new door opens up and you realize you have miles to go before your done.......

I could care less.....

Most people don't mean it when they say they don't care what other people think. 9 times out of 10 I mean it. Sure I don't want people to think I'm a mass murder, bad human etc but aside from that I truly don't care.

If you don't like my political views, such is life. I'm a Republican, right wing conservative with mildly moderate leanings. I believe in the Constitution, the right to bear arms, God and being a patriot. If you don't like that well that's just too damn bad. I also strongly believe my most important job always will be raising my children. I don't believe in crying it out, I do believe in co-sleeping, breast feeding is best. Formula Feeding is not as good and wearing your baby is more natural than sticking them in a playpen for hours at a time. Natural childbirth is normal not something to be scared of a C-section is something to be Terrified of and if you aren't intelligent enough to research your birth choices more than your car, or home buying choices than you have no business having a child. Babywise is an evil book and every copy I see will be purchased and destroyed.

I'm an opinionated thing. I've been told by a very wonderful friend on more than one occasion that I lack a filter and I'm as subtle as a sledge hammer. Frankly I'm fine with that. Because one thing is for sure with me what you see is what you get. I'm consistent. I don't change who I am from one person to the next. I don't change my political views based on what crowd I'm with, or my religious views based on what church I'm standing in.

I home school my children because I don't like the gang influences, the sexual influences and the total lack of true responsibility taught to our children. Not to mention the sad state of our public schools these days but that is a rant for another time. I get judged for home schooling and yet my children are very well adjusted, highly social, very intelligent and empathetic towards others. The same cannot be said for many others of their ages.

I've been told I sound like a snob but it's less about being a snob and more about stating facts. I speak the truth as I see it.

I'm opinionated yes, does that mean I'm always right.....no. Does that mean I'm always wrong.....no. But life isn't about being right or wrong. It's about living life on your terms, your way, in a manner you can live with. Because at the end of the day you want to be able to look in the mirror and recognize who you're looking at opinions and all.

Leaving the Past Behind.

I am constantly amazed at how people hold onto the past. I'm not referring to the typical memories that we all want and should hold onto. Picture of our babies, cards our loved ones have given to us, mementos of our youth. Those of course we will always have with us. These are things that most people always keep a little bit of in boxes here and there. They rarely take over our lives but rather hold a small place in it. When we need a reminder of that lovely time in our lives we pull out the box filter through the pieces and when we're done file them away till we need the again.

I find I'm saddened by those that hold onto the past like a talisman. The stroke it and hold it close even when it causes them pain. I know a few people who hold onto the pain of child hood or even the "popularity" of high-school as though it were yesterday. Decades have passed and yet they can pull upon those memories, thoughts and events as though they had happened only moments ago. It is their crutch. They allow it to paint their every day actions and excuse their bad behaviors. Petulance and Over sized ego's blend into an every day drama that seems to wash away any and all good sense when it comes to how to behave. We all have pain from childhood, we all have drama in our lives and there is no scale upon which to measure it. Mine is not more than yours and yours is not more than mine. That which is in the past is exactly that in the past. If you are indeed a grown up and have not found a way to leave your pain from the past ....in the past, then that needs to be your first priority.

My childhood was no picnic. But I survived it. I'm a grown woman with children that I will give a better life to than I had. I've learned quite simply that resentment is very simply a sharp stone held in the hand. It hurts no one but myself. Have I let all of it go? No. But I have found good ways to deal. Quite simply people grow up. Move on. You aren't children any more, you aren't teenagers any more, get over yourselves and realize it's not all about you any more.

Remembering what I'm thankful for.

I have a lot of random thoughts in my head today.

As has become routine, it was a pain filled day. Chiari does not take a day off no matter how much I might attempt to bribe it.

But really my thoughts were elsewhere today. Things I'd like to do. Get my house completely 100% clean all in one day (yeah I'm laughing too), spend more time with my kids, and get my Doula certification.

In the past few years I've become passionate about birth rights, and choices for women. I could list all the reasons why but it's really simple birth is natural and society has turned it into something that needs to be "fixed". I believe women should be supported by someone who only has their and their babies best interests at heart. But that is a long winded rant for another time.

I also thought today about how despite the issue with my brain I am truly blessed. For almost fifteen years I have been married to an amazing man. I've mentioned him before but today I was out shopping for groceries, in pain and frustrated and yet I saw something that reminded me of him and suddenly I was smiling. I couldn't wait for him to come home. It never gets old to see him come home at night, and I savor the moments of alone time we have. I have joy in my life, my children are healthy, intelligent and kind. We have a home we can call our own and food on our table. It's the simplicity of it that makes it all the more meaningful.

Things aren't perfect in my world but the most important things make each day a blessing. It's not that hard to remind myself on the bad days that there are so many good things in my life.

Tonight I could have gone out for margaritas and I wanted to but the headache, long day and lack of energy left me with two choices cook for family or go out. It was an easy choice. I put all my energy into a very lovely dinner for my family and a good friend who came by. It was a good night, low key with good conversation, laughter and my own comfy couch.

These are the things I'm thankful for, the simple things.

Doing too much and yet never enough.

So I'm rapidly finding out that Chiari 1 is a temperamental pia. It doesn't like busy days. It doesn't like the days when I have 19+ things on my to do list. Boy does it let me know when I've ignored the warning signs.

Thursday was an insanely busy day with a huge list of things to do. This is not out of the normal for me. So I went about my day and didn't think much of it until I felt that nagging headache inch upwards as the day got later. I ignored it. I knew I shouldn't and I did it anyways. I stubbornly want to believe that nothing has changed. Well I was wrong. I continued to ignore the headache and the other signs like my speech getting worse and very minor balance issues that I'm sure only I noticed. I pushed all that aside and continued about my day and night.

Finally it came time to go to bed. By this time I had a headache I don't even want to put a number to and I couldn't sleep. I took half of a vicoden. The drug I have a love hate relationship with. Much to my surprise it didn't do damn thing. I might as well have taken a spoonful of sugar and waited for Merry Poppins. I forced myself to bed and laid there feeling that awful tightness take over. I tossed, I turned vainly trying to find a position that would "fix" the pain. I should know by now it isn't going to happen. It's not like when I eat and the chewing makes my head go numb. At least then I can stop eating. No this is different there isn't relief until whatever is going on inside my body works itself out. The last time I felt this bad was the night before Thanksgiving.

I fully expected to wake up feeling like my head would explode and have to stay in bed all day. Through some grace of God I woke up feeling only as bad as when I finally fell asleep. I was delighted and I mean that, no sarcasm. Chiari means often being grateful for the strangest things. Like not having your hands go numb, not having ringing in your ears for a day or having the pain be at a level that allows you to function. The surprising part is you'd be amazed at how much pain you can be in and still function.

Still the intensity of the pain subsided and life moved on. I had a fantastic day at work today. We stayed busy, had good conversation, my hands only went numb a few times, I didn't stumble once and lunch was fantastic.

I am determined to acknowledge the not so great parts but relish in the good things. And I will slow down even though that will be the hardest work of all.

Nightmares and Faith.

I dreamt about Elizabeth Smart the other night. I don't know why can't fathom how that dream came to me but it did. It was vivid, scary, sad and far more than I ever wished to dream. I woke up shaken and relieved to find all my children safe in their beds.

The next day I started reading the The Lovely Bones. A literary masterpiece but terrifying when you have a fourteen year old daughter. The book was moving of course but more than that it echoed in my mind all the people my family has lost. Especially Damon's mother who was lost to violence we'll never understand.

The day after that a strange man approached my daughter outside our home. She was waiting for her sisters bus. He was in his mid 20's to 30's and had a very large dog with him. Shyanne is fourteen. He had no earthly reason to talk to her. Nor, did he have any reason to ask her if this was her home, what was her name, and on. Eventually he walked off only to come back around after my other daughters bus had arrived. Shyanne told the bus driver she was scared and thank god he told her he would wait while she locked the gate and until he saw them go in the house. I will be thanking him in person today.

This strange man scared her, she was visibly shaken when I got home. She called me and I came as quickly home as I could. She said he made the hairs stand up on the back of her neck and that all the dogs in the neighborhood freaked out even more than normal. At one point she almost apologized for making a big deal. I made sure to point out to her a grown man has no business trying to make friends with a young girl, alone at all for any reason.

I still haven't recovered. I don't think she has either. Last night as I lay awake in bed with a blazing headache that hasn't left me yet I put these three seemingly random things together. Elizabeth Smart, The Lovely Bones and a stranger approaching my 14 year old. I swear for a moment I couldn't breathe.

I was raised Catholic devout at that, my husband was raised Jehovah's witness. from the beginning we agreed on a neutral sort of faith. I had lost my true faith years before for reasons I don't care to share. He never lost his just grown out of what he'd known. I thought that a life with God in the periphery was good enough. I prayed but I also questioned all things related to God. As an adult I haven't understood "blind faith" believing just for believing. I believe in logic. The things that made sense and can be explained I clung to. Logic has kept me safe more than a few times.

Lately Damon and I have been talking about finding our way back to faith. Me far more than him. Little by little I find it's getting easier to believe that God is watching over us. I firmly believe he was watching over my daughter yesterday. I believe he sent me a message in the only way I would understand a dream and a book. He was saying watch a little more closely, never become complacent and perhaps, to slow down a little.

I'm listening. It's still work to remember that faith isn't easy, that for me acceptance is work but I'm getting closer.

It's one of "those" days......

I woke up with a headache. Not just any headache but the kind that make you want to remove your head and borrow someone elses. It started yesterday with a massive out of the blue anxiety attack. If you've never had one of these imagine almost being part of a three car pile up in which the cars catch on fire. You're sitting their in your car feeling the adrenaline rush, and the fear knowing that your okay but still having trouble functioning. That is an anxiety attack.

That was yesterday today I woke up and my daughters bus to school was waiting for us. Talk about flying into action. So all of this led to the C-clamp on the back of my head and the too tight jeans analogy being an overwhelming reality from the moment I crawled out of bed. There will be no Vicoden for me today as I have to go for a dress fitting, for my mothers wedding and I'm behind on the homeschooling. Plus I have shopping to do for said wedding and haircuts etc. so no rest for me today despite the fact I would love to find the blissful oblivion of narcotic induced slumber.

I will start by making lists, so I don't forget all I have to do today. I used to make mental lists, now pen and paper are required. I would love to post something positive about how today will go but I'm not finding it at the moment. Hmmmm, I'll just have to keep looking.

Always a bright side.....

Despite having Chiari 1, which is a constant thought throughout my day I am blessed. Yes there are the speech issues which make me sound like I'm eighty instead of 35, yes there are the ever intense headaches, yes there are the balance issues (thats new) and the endless list of other symptoms. Still I have many things in my life to be grateful for, my husband who always supports me, my children who make laugh and smile every day and friends that really "get" me.

I love my job. No I'm not saying that in hopes of a promotion and not because my boss might read this blog. But somehow I ended up with a job I really love. I work at a Childrens ' Resale Consignment shop. Not exactly what some would consider a career of a lifetime but it is a fantastic job.

If you've ever met me in person you'd know I love to talk, and I always have something to say. So working with the public is always a plus for me. I like people (for the most part), the lady who never smiles and the guy who stares at the wall wishing he was anywhere else just make me want to work harder to make them smile. I have four children so of course I love seeing all the kids clothes, toys etc. that come in.

But, the greatest satisfaction is from helping people. I love helping people find that perfect outfit, the great deal on a baby bed or answering questions about pregnancy that for some reason seem easier to ask a stranger. I couldn't be happier if I were an Astronaut.

The cherry on top well there's about five. I adore my boss, she is truly a great human being . She is a lot like me she likes helping people and is generally in a fantastic mood. I can take my children to work with me anytime I want, and the clothing perks have made this year much easier.

Of course there are the downsides, screaming children, running children, clothes I wouldn't let my dog wear and people you can never make happy. But it's well worth it from my end. ;)

So I didn't really explain what Chiari 1 is and while I won't go into all the specifics, it's basically where the cerebellum droops down into your brain stem. The length of the herniation ( drooping) is not necessarily congruent with symptoms. Someone can have a very mild Chiari such as a 1-2mm herniation and have multiple symptoms and some have a herniation in the double digits and feel nothing. Mine is a 6mm herniation with multiple symptoms.

To give you an idea what it's like to have a crowded hindbrain picture this. You're normally a size 10 in jeans, but you find a really awesome pair in a size 6 so you lay on the bed suck in your gut pull them on, bend, squat and mange to get them zipped and buttoned. Then you put on the perfect shirt to cover the muffin top of belly flesh you just created. It's tight, uncomfortable and painful but worth it because at the end of the day you can take off those too tight pants and slip into sweats.

With Chiari it's the brain overcrowding the base of your skull and there is no sweatpants at the end of the day. As I said some people never know they have Chiari or they have it but either believe when their doctor says it's nothing to worry about or have no adverse effects. For those of us who are symptomatic it's an every day fight to function in those too tight jeans and to remind people we didn't choose to put them on. Yes this is real and yes it hurts, and yes it hurts all day every day. No you can't see my hurt and no there isn't a quick fix. I could live on narcotics sure, but really what kind of life is that. Yes I could find a drug regimen that works and probably will but it's a band aid at best. Chiar isn't "curable" it isn't truly fixable. You can have decompression surgery, which is removing part of your skull to make room for your droopy brain. But it doesn't "fix" Chiari and you aren't necessarily better afterwards. Some symptoms might be better but it isn't the be all end all, just ask any zipperhead.

Zipperhead? look up Chiari scars and you'll understand, while being simultaneously terrified. Chairi is not for the weak. If the jeans analogy wasn't enough imagine having a c-clamp on the base of your head every day. Some jerk gets to decide when to tighten and relax it, but it's always there . That is Chiari, when I say I have a headache I mean every day all day. No breaks for me. The list of activities I shouldn't do is crazy I do them anyways and pay for them but that is real life.

The worst thing you can do for someone with Chiari is pity them. You can sympathize, and possibly empathize but don't pity anyone with Chiari. We've got enough to worry about. ;)

The Spoon Theory written by Christine Miserandino

The Spoon Theory written by Christine Miserandino

The Invisible Power

So I'm going to whine, fair warning for anyone that doesn't want to read further. Not of course that anyone is reading in the first place but well warning all the same.

I like many other women my age am a wife and mother. Add to that I home school, work part time and have four children not just one or two. It's a lot of work but well worth it. Suddenly Turkey day 2010 kicked my ass. A flaming headache took all my carefully laid plans for the day and threw them out the window. I spent the day in a dark room trying not to hurl and canceling all my holiday plans. My husband amazing man that he is managed to cook turkey day dinner, clean house, and keep our children happy.

I had assumed that by the next day I would be noticeably better. I couldn't have been more wrong. Instead a week later I was at my doctors office with only mild pain relief and true neurological symptoms. In other words my brain had stopped functioning and forgotten to tel me. I had speech issues, memory issues, a lack of reflexive response on my left side including response to touch and sound. My blood pressure was high and I was down 12 pounds. For someone whose average weight hovers around 110lbs this was a biggie.

My doctor who I'll cal Dr. N ordered agreed with me that I was looking at a possible case of viral meningitis, which I've had before. He ordered a CatScan and a spinal tap. The very idea of a needle in my spine was terrifying. Four children and not an epidural in the bunch and yet here I was in the fetal position while two different doctors plunge a needle in my spine repeatedly trying to find fluid. The dilauded they gave me helped but it was no trip to Victoria's Secret.

The catscan came back normal except for the shrunken frontal cortex. Which Dr. N says is no big deal. Well I saw the "no big deal" and if it was his brain he wouldn't be saying that but that's another story.

Another week later and I was still in pain still suffering from neurological issues and beginning to find everyday life a strain. So Dr. N orders an MRI of my brain. Little did I know that a ride in the brain tunnel would lead to my own Pandora's box being opened.

A casual phone call from Dr. N gave me a "your fine" and "you have Chiari 1 malformation, but it's no big deal. follow up with a neurologist for the headaches and have a great Christmas." Umm okay. So off I go to google and suddenly the last ten years of my life and most of all the last month or so begins to make sense. I described it to a great friend of mine as always having the pieces of a puzzle but no picture to reference. Suddenly someone had given me a picture. All the things that I had been fighting even before Thanksgiving now made sense.

It wasn't just tired from being a mom, the constant pressure at the back of my head make sense, not everyone has to have their husband push on the base of their skull just to get pain relief, weakness in your hand and arms isn't typical and chewing doesn't make everyone feel like their going to pass out. Huh go figure.

I could tell you all about Chiari 1 malformation but I couldn't do it justice. It is the invisible power over me. IT sounds dramatic and if you know me at all you'd know I loathe drama. But it's true so very true. I look at my life as before Thanksgiving and after Thanksgiving.

I've heard a lot of people tell me "it's no big deal" well I will continue to believe that my brain slipping down into my spinal cord is a big deal.

There. Now back to our regularly scheduled random bouts of witty nothingness.