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.
Friday, February 4, 2011
Thursday, February 3, 2011
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.
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.
Wednesday, February 2, 2011
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. ;)
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. ;)
Tuesday, February 1, 2011
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. ;)
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. ;)
Monday, January 31, 2011
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.
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.
Sunday, October 17, 2010
I Need Superpowers
Really what mother hasn't felt this way? It has either been an interesting start to a very busy week or the end of one. I've never been able to decide about Sundays, they are vague at best.
I being the wonderful mother that I am somehow failed to realize my oldest daughter was turning 14 on Mon. Okay so technically I knew.....I just thought Mon was a lot further away. So much for the stellar memory I used to have, yeah boog sucked that one right out of me.
It dawns on me last night that I really do need to get her a spectacular gift, something that says wow your a great kid, a wonderful sister, still sane and most of the time not a jerk. All for under $20. Like trying to find the Lindbergh Baby.....
It started out with me realizing that on the floor of my truck are work related lunch leftovers that have been in my truck far too long and I will be the one that has to open them. I'm thinking it might be best to take them to a toxic waste disposal center and just buy new containers.
A lovely starting point for the day, I managed to top it by running a red light. That's what you get for saying "green means go dumbass" so many times in your life. I'm pretty sure the guy in the big white truck across from me was saying "Red means stop dumbass" and rightly so. Crap crap crap, i spent the next 1/2 hour searching for the Lindbergh Baby of birthday gifts and reminding my but it was no longer attached to the seat of my truck. You get the visual right?
So in my search for the birthday gift that says it all I decide on a plaid purple jacket, just what every teen girl wants and it's useful. Can someone please tell me how it's possible that there is not a single purple plaid jacket anywhere in town? The most horrifying fashion trend of all time currently permeates every school in the city. Call it Emo, 80's redux, gender bender chic whatever but purple is "the" color only I can't find it anywhere. The only jacket that comes close to resembling this sought after style is $80 some odd dollars.
Seriously...for a jacket that will without a doubt end up on the floor or at some point have a dog sleeping on it? Did I mention it's Sunday and any or all consignment shops are closed. Except the one I work for because empty handed as I was at noon, I still had to go to work.
To say I wasn't motivated at work was an understatement, .........
Friday is the birthday/halloween/costume party I agreed to.........Mercy
I being the wonderful mother that I am somehow failed to realize my oldest daughter was turning 14 on Mon. Okay so technically I knew.....I just thought Mon was a lot further away. So much for the stellar memory I used to have, yeah boog sucked that one right out of me.
It dawns on me last night that I really do need to get her a spectacular gift, something that says wow your a great kid, a wonderful sister, still sane and most of the time not a jerk. All for under $20. Like trying to find the Lindbergh Baby.....
It started out with me realizing that on the floor of my truck are work related lunch leftovers that have been in my truck far too long and I will be the one that has to open them. I'm thinking it might be best to take them to a toxic waste disposal center and just buy new containers.
A lovely starting point for the day, I managed to top it by running a red light. That's what you get for saying "green means go dumbass" so many times in your life. I'm pretty sure the guy in the big white truck across from me was saying "Red means stop dumbass" and rightly so. Crap crap crap, i spent the next 1/2 hour searching for the Lindbergh Baby of birthday gifts and reminding my but it was no longer attached to the seat of my truck. You get the visual right?
So in my search for the birthday gift that says it all I decide on a plaid purple jacket, just what every teen girl wants and it's useful. Can someone please tell me how it's possible that there is not a single purple plaid jacket anywhere in town? The most horrifying fashion trend of all time currently permeates every school in the city. Call it Emo, 80's redux, gender bender chic whatever but purple is "the" color only I can't find it anywhere. The only jacket that comes close to resembling this sought after style is $80 some odd dollars.
Seriously...for a jacket that will without a doubt end up on the floor or at some point have a dog sleeping on it? Did I mention it's Sunday and any or all consignment shops are closed. Except the one I work for because empty handed as I was at noon, I still had to go to work.
To say I wasn't motivated at work was an understatement, .........
Friday is the birthday/halloween/costume party I agreed to.........Mercy
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