YES I am a Chiarian

What is that you ask? Well, it's someone who has the birth defected called Chiari (pronounced: KEY-are-EE) Malformation. (Also referred to as Arnold Chiari Malformation.) See this link for more information.

It is something serious if you have the symptoms like I do. However there are some who live symptom free all their life & never know they have it unless they had an MRI of the brain.

I'm not going to go much into this, because I've talked about it many times... I just wanted to post a little about what happened the other day that sent me to the ER. (Mainly typing this for record... & for those who were worried. Not trying to gain sympathy or anything like that... This is my blog & I consider it my journal. I say this because of a problem a friend went through about a year ago when she blogged about some of her health issues. I can't deal with the drama of anything like that... So, please don't get on me about posting this blog. Again, it's my blog / journal.) Now with that said (& I hope I won't have to say it again. LOL)... Here's what's going on...

It was 3a Friday & I started have a more intense odd type of headache. My hand was shaking & then by the time I went to the bathroom & came back to the couch I started to convulse... I was aware enough to holler up at my hubby & he came down here... after several calls to my mom & sister, he then realized it was not something I've had done before... & especially when I started talking nonsense... some words were backwards... (ie: saying ON ON ON to my dog who was in my face when I was trying to say NO NO NO go away.)

Then I would sort of pass out... probably from the exhaustion of the shaking... but would come to & would be a little more coherent enough to tell my hubby I had NOT taken anything different that I have been. This happened a few times... finally the Rescue squad came & after accessing the situation, they tried to get me to walk out to the ambulance... but my legs gave out... So they had to carry me to the gurney which was in our computer room. On the 2 minute ride to the hospital I passed out a couple times & the EMT in the back with me did that knuckle thing to my chest... TWICE. Man that hurt... but it brought me back.

The thing is, before he did it he would lift my arm up & let it drop to see if I was responsive. How do I know it? Because... my brain was actually conscious... (& I'm just now remembering this by the way.) But I could not respond by resisting. To me that was just plain odd. & Yes, I'll be bringing it up to my hubby & to the doctors.

So, we get to the hospital... & I really think they thought I was on drugs or something because they sure were not acting as if there was a problem. As my hubby pointed out to me... once they got the blood test results back, I'm sure they're feeling awful for thinking that way. At least I know I would be.

Ok... so I'm there & my hubby is on his way... so they're asking me questions like are you having a seizure? Uh... what? Isn't that what you're supposed to determine. I guess they were trying to see if I could answer.

Well finally my hubby arrives & tells them about what Chiari Malformation is (from what he knows). They don't seem to care... but still they gave me a shot of Adavan (or Atavan?) & sent me for a CAT scan.

At this point I'm not shaking nearly as bad... but they got my head strapped down & a couple moments later was wheeling me back to my ER room. (Oh, they tried to get me to scoot onto the scan table & my legs just wouldn't move. UGH!)

Anyway, the CAT scan & blood tests came back normal, so they say & they sent me home. (Thankfully we were not there very long. It must have been a slow day for them.) I still think they're thinking I was nuts or something.

I finally fell asleep about 10 to 20 minutes upon getting home. Hubby tried to go to work while I was sleeping, but they "kicked him out" LOL... I guess basically saying go home to be with your wife. However, he brought home the laptop & did some work & they said to call in his time & they will pay him for it. To me that's great!

I woke up when he got home after Noon because the dogs were barking. Then didn't go back to sleep 'til about Midnight.

Well things don't end there... & maybe a few of you noticed it when I posted the quick note about my trip to the ER... Yesterday when I woke up after only about 4 hours sleep, I typed up some emails to family & friends... & the quick note... & it was brought to my attention a few of my words were backwards. (ie: tib instead of BIT or 'ko' instead of 'ok'.)

It's just another symptom in the long line of other ones with this condition. What do you expect when something is blocking the fluid / blood that the brain & the rest of your body needs???... Of course there's going to be problems.

What's so frustrating is that, as you all know, I'm a writer (at least I'm trying to be!) & with my yearly challenge coming up next month (50,000 words in a month)... well... all I can say is ... ARGGGHHH!!! well, that & ... I sure hope that this particular symptom will not rear it's ugly head anymore!!

At this point I am catching some (hopefully all) of my mistakes... but if it's bad enough I may not be able to write this year. & For me... that is completely depressing. Because that's the only thing I can really do right now... that & play games on Facebook. (giggles). (I've even stopped playing Second Life for the most part because it was stressing me out too much. Long story for another day.)

So, anyway... for now, I'm doing ok... beside still battling one major headache... I have to keep my stress as low as possible & stay relaxed. (Another reason I'm thinking about skipping the NaNoWriMo challenge this year. We'll see.)

As long as my stress is low & I don't get over heated (physically) it should keep the pressure off my brain to where I can function. Other wise, I may end up in the ER again... & honestly... we do NOT have the money for that... (nor the insurance!)

Alright, alright... I've gone on long enough about this. Again, if you want to know more about this rare birth defect, please check out The Chiari Center Foundation's (TCCF) website. (It's new but still they have quite a bit of information up already!)

OH... wait... I posted a note awhile back about having new found hope... I almost forgot to tell you... I spoke to a lawyer & he said he thinks we can win my case for Social Security Disability... Then I talked to the gal who founded TCCF & she has put me in touch with a specialist in PA... & she gave me a lot of hope in the fact that she had the surgery & is now completely SYMPTOM FREE!!! So... again, I have HOPE that my life can become active again... not a guarantee... but it's good news!!

Maybe Social Security will look at that aspect & see that I may not be on it long & finally approve me. If they do... the back money I would get WILL be going to getting the surgery! (Oh, I can't believe that I'm actually saying I want a surgery... well, not really... but if it will help get rid of these headaches & give me back my life... Yeah, I'll do it!!!)

Alrighty... I believe I've gone on long enough. Take care all & don't worry, I'll keep you all informed.

btw... if you're on Facebook & want to keep in touch... send me a PM & I'll consider adding you to my real name page. If you're one whom I'm not quite familiar with, I can add you to my other page that I set up with my web name. There are a few of you that I won't mind having you connected on my main page... but please don't take offense if I give you the other... I think you'll know. Also, I've not sent out invites to those who I will accept, because I didn't want to bug you. Hope that make sense.

Hope all this make sense... & Please let me know if it doesn't (or anything else in the future)... I do need to be made aware of when I'm NOT making sense. I need to keep record of this stuff.

Okie dokie... that's all for now... *tosses some chocolate out to the masses & gives you all a big HUG!!* Take care! ~ Toodles! ~

(P.S. The blog picture is the logo & ribbon from TCCF. The "awareness ribbon" can be purchased on the site. See link above!)