Tuesday, February 19, 2008

Finding and giving support to other Chiarian's

First I'm just going to give a quick update (a recap of last post). I'm healing very well. Hard not to with the amazing care and support from all my family and friends. Two and a half weeks after the surgery I decided that to take my self off of the pain narcotics. I was still in alot of pain but the drugs had worse side effects. I had a hard time sleeping and when I did fall asleep I had terrifying nightmares. I did speak to my Surgon's assistant and she suggested I try Darvaset for pain. It's a non- narcotic pain med. I took one when I woke up and one before bed. After a week I cut back to only one at night. You see, it's not that my pain is gone or that I'm a glutten for pain I just believe that one the drugs (even Darvicet) my body couldn't tell me when enough was enough and to rest so I would "over do it" more when taking pills. So hurting yes but being more awarwe of my body and limits. I have had an emotional time with all of this and can't wait to have no more limits to what I can and can't do.
With my head more clear and my eyes a bit more open I look back on all of this. The whole experience from start to finish. I remember the struggle of thinking I was crazy because no one knew what was wrong with me to being terribly frightened about the surgery. There were so many decisions that were hard to make and no one to talk to who had been through it all. So here it is...
I am going to beigin a new chapter of my journey. This chapter is about me helping others. Give them ( family and frineds too!) support, knowledge, and most of all some one to talk to. I'm sure there are Chiari support groups out there. My intentions are to help people who need those groups find them and to join or create a support group locally in MN for people affected by Chiari. Please leave a comment, call me, or talk to me with ideas or comments.

PS...Yes yes yes the pictures are comming but I have had problems putting them in my computer. Maybe computer wiz kid Roberto can figure it out for me. :)

Love,
-AP

Thursday, February 7, 2008

Out of the hospital and on the move

So here I am back at home and as my grandma has been saying, "Siting up and taking nourishment.". The surgery was a lot different than I thought it was going to be. The morning of the surgery I had to decide what kind of experience this was going to be for me. Long story short I went into the pre-op and the operating room laughing and cracking jokes and came out of the anesthesia laughing.
That was the weirdest part. I woke up as they were removing the int abater tube. I was coughing, spitting and laughing. Laughing. Huh. The only thing I can think of is because I went under laughing that I came to laughing. Any hoo.
The hardest part wasn't the surgery but the recovery afterwards. The surgery was actually the easy part. They poke me with a few needles and I'm out, then they poke me with a couple more and I'm awake. But managing the pain has been the hardest. For the first week I thought I was going to die. I really just felt like death. Then They discharged me from my hospital suite and sent me to my aunt Dee & Uncle John's. I was all kinds of sick for the first four days. And then it was as if a light switch, that no one ever told me I had in me, was flipped. I went from sleeping, hurting, and vomiting, to eating food, walking around, and smiling. I was thrilled when I turned the corner. But wait there's more...
Now this switch didn't take away the pain. All the switch did was take the sick feeling away. It seems that the better I feel the more I hurt. Here's what I mean. From the shoulders down I feel great, and now that I am off the pain narcotics my mind is clear. So here's my problem. If I sit on the couch all day I may feel lazy but I'm not too sore. For those of you who know me though know that I don't sit still well. (I think that comes from my perpetually moving mommy :) ) So All of me feels normal except my neck and head. Crap. So I push my self and push my self and do more than I should be with my body. And then I hurt. I go and go and go until I can't stand the pain any more and I have to stop and rest. I also went from being fully medicated on 3 different pain narcotics to flushing those down the toilet and only rely on one hopped up Tylonol before bed and then when I wake up.
But over all I would count my self extremely lucky and fortunate. Here's a quick break down;
My main neurosurgeon was absolutely the best I could have ever asked for, my secondary neurosurgeon was hot and very nice...and a very good doctor hehehehe, my family and friends all kept me going and were there for me every step of the way, and I am getting better.
The doctors say that in three months when I go back for a post-op evaluation and MRI's that I should be able to know by then if I have any left over symptoms.

So thank you to all the doctors and nurses but just as important...THANK YOU to all of my family and friends who keep me going. I'm not out of the woods yet but I'm on my way. I do still plan on blogging because I know that there is more to come. I am going to be putting pictures of my head on here really soon so keep in touch and feel free to keep reading!!

Mwah!!! All my love!!
-AP