Saturday, September 27, 2008

Sayin' Bing Bang, it hit me like a Boomerang!

After Josh's visit today with my brother, Philip, and beautiful sister in law, Julia, and constant "Why haven't you visited me yet"'s..I'm going back to Texas. And as Lacie would say, No Joke!!!!

Now, I haven't flown in 4 years, and I was supposed to experience my first flight, post-op with Josh to Chicago for Thanksgiving. I am so scared to fly alone, although, I don't voice my feelings! On the way to Dallas, I have a layover in New York City. That VERY short flight just may be enough for me to handle! I suspect the flight from New York City shall be very painful, and complete hell! I imagine that my Excedrin will be my best friend throughout the flights!

I love my brother more than ever imaginable amounts! I am his little Pop-Tart! (Only Philip would get this!) He is for sure one of the most influential, loving man I've ever met in my life! He has such compassion for everyone!

So pretty much, long story short, one, I feel like complete hell. Two, I get to goto TEXAS!! YAY!! Third, I'm scared as hell to fly! Lastly, I love you Philip!

Friday, September 26, 2008

I know what to say but don't know where to begin!

First, welcome to my blog! This will be the place where I talk about my Chairi, as well as personal thoughts that are affecting me!

After having about 6 weeks of constant headaches, balance issues, memory issues, and confusion, I decided to go see my neurologist in May of 2006.

I was diagnosed on May 19, 2006 with Arnold Chairi Malformation, with a Syrinx. Long story short, my brain was crushing my spinal cord, and I also had a spinal cord fluid build up.

I had my decompression surgery on June 30th, 2006 at Albany Medical Center in Albany, New York by Dr. Paul Spurgas.

About 6 weeks post-op my mother had noticed an extreme amount of swelling on my neck, around the site of the incision. I was taken to Albany Medical and had a CAT scan to see if this was due to hydrocephalus (water on the brain.) Thankfully, all tests came back negative!

My Chairi battle even post-op have still been a challege for me! My head still hurts, all of the time, and I live off of Excedrin! (no joke!) My memory and balance come and go as they wish.

It is rather frustrating! Many times, Josh and I have been walking the dog and I just get really confused and have to stop and just have to attempt to remember what was going on!

Going into surgery, I knew there was a 20% chance of little to no relief of symptoms. I honestly feel like I am in that 20%. I have a headache all day every day. At any point I am alone, I cry. I cry in the shower, every time I'm in there. As much as possible, I try not to show any pain infront of my family or Josh.

I don't want anyone to be afraid for me or knowing how I really feel. I attempt to put on a smile. I lie...alot. The only ones who know how I feel are my Chiari friends. Quite often, my parents are not supportive. I love my parents to death, and I am thankful I had both of them there supporting me so much afterwards. However, now, over 2 years later, I don't know how they feel. I usually just get the "Toughen up!" vibe from them!

With Josh, I always feel bad telling him I don't feel well. Most of the time I don't feel well is when we have plans to go do something, or we are already out doing something. Josh and I enjoy spending time together, which includes going out and doing new things. I think I feel that if I don't feel well while we are out, or about to go out, he will be somewhat disappointed. I love Josh! I love Josh to unimaginable amounts and the thought of him being disappointed, is just a thought I can't deal with.

With Chairi, I've noticed severe depression. It makes me very sad to know that I can not do many things that I was able to do before I was diagnosed. For example, we took Lola over to Washington Park last week so she could play with some other dogs for a change. Josh decided to take her off of her leash to see if she would run around and play with the other dogs, however, she just ran into the woods. Josh and I began running after her right away, and about 10 seconds later, I just had to stop! The pain from running, shooting pain, up my back and in my head was horrible! I attempted to shrug it off, but I think Josh knew I didn't feel well!

Hopefully tonight, I will be able to post some pictures of my scar, and my Chiari tattoo!

I want to thank you all for reading this blog!