Monday, April 8, 2013

I am alive!

First let me apologize for not writing sooner. I do have a good excuse. I am just now able to type without taking an entire day to write a post. Also, I am pretty sure I shared with you my facebook page link right before surgery so you could keep up with me after surgery.
I had brainstem surgery on March 1.  I was told an expected a very long recovery, waking up not being able to talk, walk, eat, and do much at all.  So I opened the facebook page so my husband could tell you how i was doing quickly and easily.  Facebook Update page 

We have been very consistent at updating my progress and I really dont have the time or energy to tell you all about it, so i really would appreciate if you go read and see the pictures etc on the facebook page. :)) I know you understand and I am really sorry if you thought I was dead because I never told you I was indeed ok!

A very long story short, the surgery went well! Dr. Zaidi told Jay that Dr.Spetzler had to work his magic.  He removed the cavernoma but also fixed another abnormal blood vessel that was there. It was initialy thought to be an AVM.  I woke up not being able to move at all.  I was expecting it and was not upset. I was just happy to  be alive, to be able to see. I didnt have a breathing or feeding tube in place, which is very rare and fortunate after a brainstem surgery.  In all, I knew right then that i was going to be not only okay, but make a very good recovery.  I was ready to start the recovery, work hard and live my second life :)   I amazed myself and everyone when i could raise my arms less than an hour post op and  move my toes the next morning after surgery.  That showed us all that my numbness and the fact I could  not move was not paralysis and I could re learn how to walk. It was not enough to be able to "use" them, at all, and they felt useless, but the fact that I could move, even if i couldnt feel, was fantastic news.  I was so numb you could of skin me (eww) and i would not of felt a thing. BUT I could move my arm and wiggle my toes! So the 95% paralysis I was "guaranteed" from my local neurosurgeon went right thru the window :))    I heard the word "miracle" a few times but even tho I know God blessed me tremendously, i have a hard time accepting that.  Miracles happen every day in small and big ways, and I dont feel like one. I feel extremely lucky, blessed to the point of having some "survivor" guilt but maybe i am just in denial, i dont know.

I was moved from the ICU to the inpatient rehabilitation center 4 days after surgery. They moved me to a inpatients rehabilitation center where i re learn how to walk and do basic things.  I was supposed to need 2 months of rehab, but by week 2, I was strong enough to go home for out patients rehab!   Now week 6 after surgery, i can walk without the help of any devices in the house. It doesnt show how much I work to walk "normal" but its important to me and I am not the complaining type and i dont need credit for things i feel i "should" be doing!  I need a walker or cane in big open spaces but its nice to be good in the house. I need the cane a few times a day especially at the end of the day. :)  My legs are still very stiff and feels weird but therapists showed me they work. haha  I work hard to talk too, to focus on what you are telling me and a lot of other things.  For me, working hard is not only reaching a point where i can do something, but to where i can do something and it doesnt show that I am putting all that effort. Its very tiring, but in the end I prefer that. I think the more you push yourself, the stronger you get anyway. If i laid in the bed all day, which i could totally do with the way i feel, i probably wouldnt be walking as good and looking as "normal" as I do.

Its tricky for others tho.. Everyone that sees me think I am doing wonderful because they say I dont look like I just had brain surgery.  Because i physically am capable and I mentally push myself...and I am the same energetic person.. it doesnt show how hard I work and focus and how much quicky i get tired, its more like a exhaustion from working so hard really.  I am very patient with myself and dont feel sad when its only noon and i am completely out of juice. I know what i just went thru, i feel how i feel, and i know I am doing good. That sound like a complete "brag"... but i guess in some ways because I dont complain and i know i could I am patting myself on the back. hahaha

To know more and see what i am dealing with as far as long term recovery process and permanent nerve damage, please go on that "That brain Fart" page on facebook :)) (my fingers are very numb from typing now)

My mother and sister are here!!! We are so happy to finally be together.  We have never been here together and not been together period for more than 2 days (my grandma funeral last September) for more than 3 years.  I have not been with my family (jay, kids, my family in Canada) since 2007.. anyway....  we want to spend a  lot of that time just hanging out and talking and doing nothing, just the 3 of us.  Relaxing together is sooo wonderful. It was so hard for them to be so far away from me when i had surgery. They want to be with me and just enjoy each other presence. Like they need each minute to be about catching up , talking and focusing our energy only on that.
The weather is beautiful too, gorgeous!! So its sooo nice and we can just go outside and sit and just drink coffee while we chat.  That's pure happiness right there and all we need. haha

I hope to write more now that its easier for me to type!  I obviously cant work for a while. But soon the kids will be home for the summer and I wont have much time to write either haha there is always something right ?!

This whole journey was and have been so amazing. There is so many things i would like to share and go into details. I kept this post very "facts" and with not too many emotions, but it was and still is quite the emotional journey with lots of amazing things happening.

:))

Smile!

2 comments:

  1. Glad to hear you're in good spirits! :) Be AWAP ~ as well as possible!

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  2. I am so happy to know your recovery is going so well and you are doing wonderfully! Just keep on trucking along. So glad to see an update on this lovely blog of yours. Let's chat soon!

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