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. ;)