Chiari Daily Life

      I figured that it may be time to try and remeber all of my symptoms and put them to paper so this may actually help some one some day. Before the decompression surgery I would randomly pass out becasue the pressure would build up at the back of my head. For years my husband thought that it was hilarious to make me laugh so hard that I would pass out. Little did we know that doing that I could have been blind or paralyzed with any of those instances. Holidays I always seemed to end up in the hospital because the stress would bring migranes that really just left me waiting for death.

     Since the brain surgery I have daily chronic pain. And to the point that some days I cannot physically get out of bed without assistance. I used to take vicodin for this, but the amount that I had to take just to function through the pain started to kill my liver. Sooooo, they put me on Lyrica. This makes a good amount of difference in the daily pain, but does not however help at all with the trigger pains. I.E. loud noises, bright lights, stress, ect. . . Besides the pain I have these odd siezures now that I have NEVER had before. The Lyrica is supposed to be an antisiezure medication as well but I do not really see a difference. The Lyrica itself is a pretty heavy medication and at 23 I do not drink alcohol at all anymore simply becuase I cannot mix it with my medicaitons. Its a pain trying to explain to people that I do not nor have I ever had, a drinking problem. I choose not to drink for me.
      On the more minor side effects list, is the hearing loss (I only can afford one hearing aid right now), mild dementia (SUCKS!!), and the random vision loss. There are times since I was pregnant with my daughter that my vision either partially or completely goes away for a few hours. It seems to be related to stress levels but not always. Within all of these random things the onset seemed to be the brain surgery itself. A few neurologists related many of my issues to the daily pain, but a few also told me that I wasnt sick at all. I think that this is the biggest problem I have faced from day one. I have seen well over five different specialists and they all had completely different things to say about the Chiari, the answers ranging from "what is that?" to "DONT LAUGH YOULL DIE". Sad thing is that I am not joking. . .
      There are quite a few more minor issues that I seem to have on a day to day basis as well as the more major things like the stroke that I had, but I cant really think of what else to say about it. . . .

Done for today!!

RANT, eh.

     I know that I do not have to explain myself to anyone, and often times I do not, but dear god some times I really want to put people in their place! I do my best to stay humble and as happy as possible, but pain is a game changer. It has taken a lot, and I mean a LOT of energy to not be angry all of the time and be able to deal with the people that I just cant stand. Dont get me wrong, I do not waste my time on those people because lets face it I wont live a full long life. I am careful with who I associate with but sometimes its people that I am related to that I just cant stand who they are as a human being. . .
     Terrible I know, but I get soooooooooo very irritated with ignorance. If I can get my degree in my spare time while healing from brain surgery, cancer, having a baby and working full time, then ANY ONE CAN!!!!! I just dont generally have the patience for those people that constantly make excuses, or see no reason at all to better themselves. Time is so very precious, more so than most people care to realize. So why would you waste your time and not do productive things?? I know full well that my life expectancy is shortened by my health, so I take advantage of every moment that I can. Some people get irritated or judgemental about how I choose to spend my time and energy. Thats fine, I really dont care, but I do my best to not shove my ideals and belifs down others throats (this post aside ;-)). I just have a very hard time listening to certain people complain and make excusses for why they have not accomplished the things they want to.
     Wow, Ive been holding that one in for a while and feel better and worse all in the same token. Life is not perfect, I understand that. But I do my best to get my happy ass outta bed every day and create a better life for myself and I really try to better myself as much as I am consciously able to. I know that I have anger problems, so I am working on it. I know that I  have confrontation issues, but I am working on it every day. Pain or not, people depend on me and the world doesnt stop spinning just because I'm sick.

Here we go. . .

     So I have been thinking for some time now about starying a blog about my health and just general life. I figured that since so many people I come across with the Chiari Malformation just kind of give up, I would try to be my own inspiration. Maybe it will help me, maybe it will become a burden, maybe it will help someone else. Who knows? But I am at the point that I think it will be beneficial for me to do it, so here we go. . .

     I am 23 years old and have Chiari Malformation. I have had one decompression brain surgery and will undoubtedly have to have more at some point. They beleive that I was born with this and it was not discovered until as a teenager I caught Spinal Meningitis. After almost dying from that, all of the scans and what not showed that I had a very severe malformation. It obviously explained all of the issues that I had been having all of my life and put a name to a face so to speak. at 21 I had the surgery and I regret ever making that decision. before the surgery I had issues but since the surgery my daily life has been impeded way more than it ever was before. I have chronic pain, siezures, mild dementia just to name a few. I still get out of bed every day and play with my kids, talk to my family and love my husband. Its just a bit harder to do that it used to be. Existance isnt as simple as it used to be. Between the pain and all of the medication that I am on a lot of things have to be taken into account in my daily functions . . I for some reason dont feel like going into detail about the symptoms and what not, so Ill save that for an other post.

     I am not really sure what I expect to come of this or why the hell I even wanted to do this. Hell, I dont even realy know what constitutes a blog. . . But we shall see in time I guess.