Friday, December 31, 2010

Happy New Year, please

I know that I did a happy new years thing before but I dont remember what I put.   I know I was probably being mostly snarky....and i probably will be in this too, but i would like to wish those of you that actually read this a Happy New Year!

I am begging for a GOOD YEAR.  One full good year.  PUH-LEZE!!!  I don't think that is asking for too too much.
2009 was the start of my downfall.  I thought 2010 was gonna be good and it was pretty good, I was learning the new me and getting some independence back and some life back, and then it went down the shitter.
NO MORE MOTHER EFFIN BRAIN SURGERIES PLEASE!!!!!!  AND NO MORE BODY ORGANS REMOVED!!!!!  NO MORE TITANIUM INSERTED.  I am done done done done done.  I need to get my life back please.

I mean really, I need a life.  I need to stop being in fear, and to be able to start planning things for future.  I don't mean long future, just a weekend or something.  I need to be able to do that.  I can't do it now because i never know how i am going to feel.  If i am gonna be in a good mood or bad mood or too tired or too dizzy.  I friggin hate that.  I need to find me again.

I need to get a job.  A real job.  I am too high functioning for assembly line stuff through Life Works.  I REFUSE RETAIL.  I dont care, I REFUSE IT!!!!!  I need a real job, a career job.  Like helping people kind of job.  And yeah, I am most comfortable in hospitals, so still tossing around idea of Nurses Aide if I can just get over my anxieties about myself.  I gotta stop second guessing myself.  I CAN DO STUFF!!!   TBI does not define me, it is just a part of who I am, gotta stop letting it get the best of me.

So for new years, here I go....
   I will not get on a motorcycle.  LOL
   I will try to get a job (after more rehab)
   I will be proactive and get rehab
   I will try to find more friends
   I will officially let go of and not hold out hope for those friends that have left me.  I have to let go, I cannot hold on it hurts too much.
   I will try to define a new life "normal" for me.
   I will try to forget the past.
   I will grow hair  :)

   Again, Happy New Year to you all.  Hope 2011 rocks!!!!!!!!

And Yes, I did forget one thing.  THANKS SHANNON...i will spoil my nephew BOO BEAR!!!  I will spoil him so so so rotten.  I mean I did spoil him when he was just a picture still..gotta spoil him hard core now that he is out and about.  :)

Sunday, December 26, 2010

Christmas and my new brain yet again

MERRY CHRISTMAS.
  Christmas was good, but i noticed some new things about me yet again.   These are new things that I am noticing at least since the titanium plate was placed on Dec. 8th.
 
   Crowds and sounds and such have been a point of mine I do need to work on.  But this Christmas eve I was getting my "sweaty palm disease"  Yes, I self diagnosed myself with something.  HA!!  I have had enough surgeries I think I qualify as  doctor now.  :)

  But, Christmas Eve was at families house.  There was maybe 15 people there and I had to put myself into time out.  I was getting so overwhelmed, anxious, self conscious, and just EEERRRRG!!!!!  The christmas music and people talking was so overwhelming.  Like a batrillion bees flying at me.  I couldn't filter out if people were talking to me or just talking to each other.  It is so hard for me since the scramble and now it was intensified.  I was getting so angry at the situation and myself that I went to the garage to calm myself.  Iutistic wish I could put these feelings into better words.

   That was for about the first 3 hours.  And then as my body acclimated and I calmed myself I was better and able to handle the night better.  I just get so annoyed I have to change myself for situations.  I just want to be "normal" again.  I know that is not going to happen, I know that but that does not mean I still don't get frustrated!
 
    Now I am gonna go get my new Black Eyed Peas cd and bounce around and shake my groove thang!!!  LOL.  Makes me happy, I love me some Pop, R&B, Rap now.  LOVE IT!!!!  Puts me in a good place.  If you get a chance read Speed of Dark by Elizabeth Moon fiction/sci fi about an autistic man (high functioning) that listens to music at work, he is allowed.  I get it!!  I need that if I get a job.  Just to be able to function.

   Well, thats my rambling for today!!
    :)

Tuesday, December 21, 2010

Things gained and lost since TBI

I have lost and gained weight without YO YO dieting.  I couldn’t do a yo yo now, too much concentration.

Lost ability to concentrate on things.  I used to love reading!!  LOVED it.  Now it is almost a chore.  Even though  I still try.

Lost job
Lost friends
Lost self confidence
Lost Life

Gained sarcasm. YES even more than I already had.  WATCH OUT!!!!
Gained some balls and I guess in that aspect that could be why I lost some friends
Gained the knowledge of who my true friends are.

Lost the ability to go to new places without freakin out.  I need someone to go with me or I get so confused.  After first time I am ok.

Gained the knowledge that stubborness is a good thing since it got me this far

Lost ability to be able  to answer a question.

Gained dis-inhibition  LOL.  THIS IS A FUN ONE!!!!!!!

Lost internal organ.  GOOD BYE Galbladder, nice knowing ya!

Gained titanium in head.  HELLZ yeah!!  Guess I will be head to the wall instead of balls to the wall.

Lost shame.  Pretty much every doc and or nurse in UPMC system has seen me nekkid and has heard my potty mouth.  LOL.  Pretty sure most of my friends have gotten a show too.  I ROCK!!!

Gained more knowledge of the brain and its functions than I ever thought possible.

Gained a true understanding of my grandmother when she was alive.  She had alzheimers.  I now understand how she couldn’t remember what happened an hour ago yet could remember stuff from 20 years ago.  I get that now.

Gained a better understanding of the kids I used to work with that were autistic.

I know I joke about my Alzheimers brain and autistic brain, but it is true.  I don’t remember things in the moment, yet I remember something from years ago.  New places freak me out, lack of routine is killing me.  Hello Autistic Granny.

Gained a friend in real life and a whole virtual family.  My virtual TBI family means so much to me.  Michelle, Toni, Barb, Brian, Wally, NjGirl, the rest of the crew!!!

Hopefully someday I will think of more things gained!!

Friday, December 17, 2010

jabber jaws day...this is a positive one not a bitch fest

I realized that I do spend so much time on the negative.  It is just easier, but I do want to say this.

THANK YOU for those of you that have stuck through this with me.
Thanks to those of you that support me on facebook.  That send me lil messages and that just keep my spirits up.  Thank you.

Thank you to those friends that live within a ten mile radius of me and have stayed with me.
  Thank you for giving birth to your son when it was convenient for me to be there.
  Thank you for taking me and or coming with me to doctors appointments.  The ones where I was too scared to drive myself.  The ones that could have been scary appointments.  The one year anniversay appointments, and the ones at new doctor offices.
  Thank you for taking me to court and staying with me.
   Thank you for those of you that have rearranged schedules to help me on days when you should have been working.
   Thank you for those of you that have taken me to the grocery story at the beginning when it was way too overwhelming for me.
  Thank you for those of you that have trusted me to drive you places even though I have 0 confidence in my driving skills.
  Thanks for those of you that have offered to help me and actually meant it.
   Thanks to you who has driven me to a friends house when I was too scared to drive to that house.
  Thanks to those of you that have stuck through the good, bad and ugly.  You have seen me not be able to drive to your house to be able to drive there.  You got to see how excited I was that I drove there.  That was a HUGE step for me.
  You got to see me freak out and not be able to handle the mall or wal-mart to be able to do it without cringing in a corner.
   You have seen me break down and cry yet you have also been around to hear my laughter, to see me make fun of myself.
 
    You have seen my temper tantrums, have heard me verbally beat the shit outta myself, yet you stay here to help me and to make me feel better about myself.

  I know I am not 100%.  I know I have stuff to work on, and those of you that have stayed with me do make it worth it even though I am a negative  nelly alot.
  And those of you that are fairweather friends, you can bite me.  You do not get to be a part of my happiness and joy when I have it.  You just get the bitch me or nothing at all.  You are no longer worth my energy.

   This message is not for those of you that do not live near me.  So Meghan, Jason, Burke, Gina, cousins, you are all in the clear.  :) 
seriously, i dont know what to do with this version of me.  karaoops 4.0 I guess.

My anger is gettin intensified.  The littlest things piss me off and then I mentally beat myself up for being an "asshole" 

I snapped at my mom because she wanted me to make xmas cookies.  normally I like doing that.  This time the directions were so confusing!!  NO, they were not, they were the same as always  but they confused me and pissed me off.  NOthing was ready.  I had to find all the ingredients and get the bowls out and whatnot and this put me over the edge.  OMG, this is nuts.  I can't stand it.

I think part of it has to do with teh fact that since July I have not had  routine.  And once I kind of find one or a semblance of one I get uprooted again.  Right now since my last surgery I have been in Easten PA with my parents, not Pittsburgh.  The "autistic" part of my new brain really really really CRAVES a routine.  I need some semblance of a normal life.

Its to the point that I want to just tell people to avoid me and to give accolades to those who have left me high and dry a year ago.  PROPS to you for leaving me...guess you made the wise choice.
Who me, Bitter???  Never.  :)

Surgery healing wise I am fine.  No pain, I stopped taking my pain meds.  But there is emotional/mental pain.  I am an emotional wreck that is trying to keep it together.  My throught processing is slower than it has been since the beginning of this grand BI trip.  And that pisses me off and makes me sad at the same time.  And the anger is getting harder to control.  I am still not physically violent, but I am Bitchy mcBitcherson.  :)  I even said to my dad I am apparently not happy unless I have something to bitch about.

Sorry for the language in this post.  I just cannot edit myself, makes me tired.  I am done editing, I am going balls to the wall in internet life and real life. Screw it, I got nothing to lose.  Lost most my friends, lost my job, lost majority of my life.  Got nothing left.  So Balls to the Wall bitch it is.  :)

There really is a difference in this version of me.  I know I need BI help, but I dont know how to get it because I am too high functining I have fallen through the cracks.

And parts of me have thought about giving up this blog since it seems to make people upset or question me.  M, I am not referring to you.  Just sayin' wondertwin. :)   But the thing is, if this pisses any of you off, then don't read the damn thing.  People have told me before that  they were going to stop reading this, then they continued then they ripped me a new asshole and deleted me from their lives literally and facebook wise.  Guess she couldnt handle the truth.  Hmmmmm......she.....should I name she???  LOL.

So if this is my way of giving the world the finger then let me do it.  It is better than me running around punching everyone.  I can see how TBIers with less cognition can be physically violent.  I get it, I do.  Part of me wishes I could just be physically violent even if it was just for one day.  I think it would help me...but I won't do it because surprisingly I do have some self control.  Now get me in a store or around a hot man there goes the self control.  LOL. 

Ok done rambling for now.  Love me or hate me, it's your choice.  I am what I am.  Maybe I should ask for another surgery so I can be Kara 5.0 and ask for good upgrades.  Happy, Decision making skills, some impulse control, maybe lose the disinhibition, control of my POTTY mouth.  And maybe clean my dirty birdy mind a bit.  I mean I know I have always been gutter brain, but now it is increased.  My poor mom is gonna have a heart attack with the stuff that comes outta my mouth. 

Saturday, December 11, 2010

Brain surgery number 4

One of the bonuses of this  brain surgery is that the docs told me to drink caffeine to help with the headaches and I guess to keep the titanium in my brain lubricated.  But they forgot to give my my 'script for Starbucks.  :)

Surgery was on Wednesday and they wanted to discharge me on Thursday.  WTF??  I think they look of pure fear on my face and the fact that I almost burst into tears made them change their minds and I was released on Friday.  Nothing like outpatient brain surgery.  LOL.

Yeah I am jokin now but that is just so I don't completly freak out.  I hurt like a mo-fo.  Half my face is swollen, I am rocking a black eye, my neck is even swollen, and really, I am so so so so HOTT!!! 

Remember Animal from the Muppet show?  He is now in my head. He is playing the drums, running around screaming ANIMAL and pinching the inside of my head with the drumsticks.  If I was able to I would shrink down, go inside my own brain and beat the shit out of him.

I am a sexy cyborg gangsta. 

I am also loopy, and I cannot blame it on the drugs.  I don't have any more good stuff since I am out of the hospital.  BOOOOOO.

I hate when my friends text me and let me know the normal fun things they are doing.  I know that they mean well, I know that they are trying to make me feel normal.  In my old life this would have been fine, it would have been normal and i would not have thought anything of it.  And now it just hurts.  I just miss having a life.  I hate being transported back and forth from Western PA to Eastern PA.  I just need some sort of normalcy.  Something, anything.  And I need better drugs right now for the pain.  :)  Drugs, they do a body good.



Saturday, December 4, 2010

here I go again on my own.....KINDA, just have that song in my head

So I know my blog seems like a bitch fest sometimes.  I know that, I really do, but I NEED this or I really would be running around beating the shit out of people.  Seriously.  I have explained enough why I am like this, but one more time...Imagine having your life just taken away from you and being aware that the life was taken away from  you and trying to figure out how the hell to get a new life and being scared to death of doing that.

The up down all around emotions I have must be tough for those of you that put up with me and them.  Imagine how they are for me.  THEY SUCK.  I dont want to be psycho crazy bitch, I really don't want to be.  It's not fun for me.

And speaking of fun.  I hate when I hear some songs from my Old Life, they remind of the fun times and fun life I used to have.  And then it makes me cry.  I love Black Eyed Peas and there are some songs of theirs I cannot listen to because they remind me soooo much of good times in my old life.

I hate being 31 and having different lives.  Really, I swear I am not schizophrenic, I am just complicated.

I really do miss the old fun me.  Yeah I had my moments, who hasn't.? It seems like I am in a perpetual moment now.

This blog helps me and I hope that it helps some of you.  I am trying to teach you about me without having to talk to you about this stuff.  It is easier for me to write it out than speak it.  This way if I use a wrong word or even lose my words for a minute I won't beat myself up because I am not being "weak" in front of you by making a mistake.  You don't know I am making mistakes.  Thank god for proof reading.

Do you know what it is like to feel like you have to fit in all responsibilities and fun you can accomplish into 3 days, because in 4 days you are having brain surgery again?  I feel like I need to pay all my bills, and do all my chores, and  try to have some fun...whatever that is.  I feel I need to cram it in and that in itself is not fun.  It makes me feel frantic, and when I feel frantic I make more mistakes.

I need to do this because I will be having surgery and then ripped from my Western PA life and have to go to Eastern PA with my parents until I can be independent again or until after Christmas.  I don't like all of that change and going back and forth.  It physically hurts my head and it emotionally hurts me too.


 Seriously, brain injury really does suck.  I don't know if people can grasp that.  I mean really. Sometimes it's the little shit that will put me over the edge and then I miss the big stuff.  My brain is a literal cluster fuck.  I don't think they should call it Traumatic Brain Injury, they should just call it Traumatic Cluster Fuck. Let's keep it real.

Tuesday, November 30, 2010

My world...funny and angry. lol

Ummmm...hey there mall Santa.  I am pretty sure you are not supposed to wink at me and check my butt when I walk past.   LOL.  Yeah, go me!!!  I guess I am just going to have to add Mall Santa to the list of all the random men that dig me.  Old, random, homeless, geriatric, and Santa.  I RULE  I always liked Santa, but I don't think I ever liked him THAT way.  I mean, c'mon, if I am a good girl like THAT I better get a pony.   LOL

    And I make up songs to go along with my life.  They are to the tune of real songs.   Here are my words and the real words to the parts of the songs.  Hope you can handle it.  lol. 

All I want for Christmas is my 2 front teeth
All I want for Christmas is my titanium plate


Barbie Girl, or my version, TBI Girl. 
I'm a tbi girl in a normal world,
Neuroplastic it's fantastic

I'm a Barbie girl, in a Barbie world
Life in plastic, it's fantastic!

Marilyn Manson, Dope Show  My version, Brain Show

The drugs they say, make the synapses fire.
I love my brain
titanium and wire
docs and nurses
won't feel my ire
Hate today, hope for tomorrow
I'm an allstar now, in the brain show


The drugs they say
Make us feel so hollow
We love in vain
Narcissistic and so shallow
The cops and queers
To swim you have to swallow
Hate today
No love for tomorrow
We're all stars now in the dope show

 Yeah I do have my humor but I do still have anger.  I just really really really want my life back.  I was all excited thinking i was going to  try to get into the Pennsylvania Head Injury program but looking into it, it seems to be alot about money.  I am not going to go into details, but it is not gonna work for me and my situation.  It just sucks because I know I need cognitive therapy, rehabilition or whatever you want to call it.  but I know I need help with my anger, sadness, impulse control, loss of words, using wrong words, confusion, overwhelming feeling of life, Fear and anxities over life.  SCARED shitless about having to get a new job.  How am I gonna do an interview if I cant even answer a question like, "Hi, how are ya?"  The place I found by me that has all of this plus support groups does not take my insurance.  And this is stuff I NEED!!!!! 
   Again, I know I am lucky to be where I am in the head scrambled world, and I always feel like a bitch when I say this,but i really do wish I was more messed up sometimes so that I would not be aware of all my issues or so that more stuff would just get handed to me.

   And this too shall pass some day.  I HOPE!!!!!!!
   I need to find me, because I do feel lost. 

Friday, November 26, 2010

This is not my article, but feels like I could have written this!

I did not write this, my TBI friend, Barbara did.  But I feel like I could have written this.  It feels like me and  sounds like me.  I actually had to make sure I did not write it because that is the kind of thing my brain does to me.  But wow, I read this and filled with such mixed emotions,mostly joy and sadness.  Joy because I realized that i am not the ONLY PERSON who feels this way about myself after a brain scramble.

The Brain Injury Association of America published this article, TBI Challenge, spring 2003 Issue. Volume 6 Number 3
This Is My Truth…A Survivors Story 
My name is Barbara Gray.
My entire being and the world I knew was altered on May 19. 1990. In mere seconds, my personal and professional life became a memory. The world which I knew, I would n ever inhabit again. I lost the person I knew as Barbara as well as the milieu in which she lived, socialized, and worked. I was introduced to aspects of our social/medical/legal systems which I never knew existed. Systems which I had worked within and held respect for…now each has become my nemesis.
I sustained a traumatic brain injury in the line of duty as a firefighter and EMT-S on May 19, 1990 and entered a world which I had known as a professional. This world for the survivor of a traumatic brain injury is neither compassionate nor just. Initially I held hope that my experience was unique. It is not. Initially I held hope that my experience was temporary. It was note. Initially I held hope that my experience would not leave me wounded. It has.
Yes, I am a survivor of the traumatic brain injury. There are times I wish that I had not survived or had sustained a more severe brain injury that would insulate me from the knowledge that I lost myself on that day and now am a victim of our social/medical/legal systems.
A second traumatic brain injury sustained on February 22, 2002 has only added the proverbial insult to yet another injury. Again, I am a survivor, yet I feel like a victim enmeshed in an interminable set of circumstances that I do not know how to manage.
Once again, I have met the adversarial side of the legal, medical, and social systems within the world I live. It is very lonely here and those who inhabit the same plane of existence in which I dwell truly understand; the others who dwell here are individuals who honor my truth. Their life experiences brought them to this place presently or at one point in their lives. These are the people who hold my hope and offer light and encouragement. Without these people I would concede defeat.
I do not know how to communicate with those who have not been here or do not honor my truth. I reach out, perhaps not eloquently, and am met with anger and hostility. I am blamed for speaking my truth. I am held suspect when I do not trust. I do not know how to communicate the horror of what I have experienced the last twelve years of my life. I know that I overreact to injustices that I perceive. I suspect that this is what distances and angers those around me. I have a brain injury and I have suffered much at the hands of those whom I once trusted implicitly. Now I trust but a few, for I have been wounded, betrayed, and abandoned. I do not know how to build on that trust when it continues to erode with new persons introduced into my life as teachers and healers.
Please remember that I am afraid, lonely, and very sad. The person reflected in the mirror looks like Barbara, but alas, it is not the Barbara I once knew. This Barbara is unpredictable…she is not even true to herself. She cherishes her integrity and grasps her truth tightly. It is not often honored. I do not intend to offend; the brain injury is ruling not only my body, but also my thought patters. I react precipitously, only to find that I have offended and alienated someone that I deeply need at the present. It was not my intent to offend and alienate you: it was an attempt by a brain injured Barbara to tell you have very frightened she is and asking for your direction and guidance. If you took offense on a personal level, for that I apologize. If you are turning away because you now glimpsed my world and now you cannot journey with me, I am deeply saddened. You are one more person who cannot see beyond the manifestations of the brain injury that prevents me from expressing to you what I desperately need and want. And once again, I am abandoned; left alone pondering the image I view in the mirror.
This is my truth. I am often labeled. Please remember that when you label me, my very being is negated. I, like you, and a unique individual. Without each of us, the spectrum of humanity would not be complete. I am striving to attain my highest purpose as an individual. My purpose has been thwarted by a traumatic brain injury. I have come to accept as fact that suffering is at the core of human existence. I have yet to recap the deep sense of connection to other who embrace this concept. I have yet to know the joy that can result from accepting each consequence encountered while living and dying. This is my quest and not yet my truth. I invite you to join me. Help me to integrate connection and joy into my truth. Know that you are a welcomed presence in my world.
 

Tuesday, November 23, 2010

not apologizing, but I kind of am.

Just like the title says, I am not apologizing for my recent attitudes/behavior but I kind of am.

There are some days that I cannot even stand myself.  I know I am angry, pissy, emotional, laughing, more sarcastic, etc.  I know this and the anger even gets under my skin.  I am aware of it all and yet i do NOT have any control over it, and that annoys the hell out of me too.  Randomly bursting into tears is driving me nuts too.  But there are lots of times I try to control that and that is soooo tiring.  It physically makes me tired.

I do have "excuses" for all of this.  Hi, my brain has been rearranged and the chemical balance in my brain is not what it used to be.  And since part of my skull has been removed i also now have syndrome of trephined.  Yup, i got diagnosed with yet something else.  This syndrome is real and should hopefully diminish one I get my diamond encrusted platinum plate.

There are also additional stressors in my life that not everyone knows about. I have sick people in my family, I have court date coming up, I have been anally rampaged by an old doctor and a cute resident (colonoscopy), i panic about being jobless, i worry that I am pissing people off too much that I will lose the rest of the friends I have left since I rearranged myself.  I am having another freaking brain surgery in 2 weeks!!!  

Things that make me laugh and smile...
    Putting on warm pajamas after coming out of the dryer, (The pajamas coming out of the dryer, not me  :) )
    The Neuro floor at the hospital is on the 4th floor.  The Gastro floor is on the 3rd floor.  At least they have it right, the head floor is above the ass floor.
     Shannon is having a BAYBAY!!!!!   I can't wait to meet the baby bump and corrupt him.
    I found a support group for brain scramblers.  Its people that have TBI!  It was a holy shit moment for me. It was sooo cool and real to see and hear others talking about TBI.  I am not the only one!!!  WOWOWWW!!!!  I felt normal for first time in a year.  It was sad, and yet nice to be with others that are scrambled.
    I have people that try to do nice things for me, and I try to brush it off because I feel I don't deserve it, yet I do smile and have happy thoughts in my head when this happens.  I just try to put on the tough persona.  I gotta let down my walls.  Will someone knock my wall down, but don't knock me down unless I have my helmet on.  :)
   I might try to get a haircut today at the Hospital salon.  I have not had a professional hair cut in over a year. Shannon has cut my hair once since all of my head surgeries, but I kind of want a real haircut.  I have been PETRIFIED to get a haircut at a salon, but the people at the hospital salon are used to working with patients. I just want to feel pretty for a minute before my head gets half shaved again in 2 weeks.  I am scared to try to do this haircut thing, but it is worth a shot!  I am scared of lots of things now but I do still try things.  Because I AM WONDER WOMAN.  I am sure the real WW had fears too.
   See admitting I have a fear is a part of my wall coming down a bit.  WHO IS KNOCKING DOWN MY WALL ALREADY?!?!?!?  Awesome!!!!   :)

Tuesday, November 16, 2010

not always bitter and angry

So yeah, even I am sick of my pissiness now.  So again I apologize so big to anyone that is around me.  SORRY SORRY SORRY!!!!!  I feel like I cannot say sorry enough or prove that I appreciate you putting up with my shit.  Really so appreciated like you have no idea.  Appreciated like Whoa.

I can't control it.  The weirdest littlest things set me off.  Either make me pissed, make me want to cry, or make me have a weird alien laugh.  Hopefully when I get my plate I will stop being certifiably crazy.  Neuro says that is part of my problem.  But there is not enough room to get into all my problems.  ;)
Believe it or not, sometimes I am trying to pull myself together and then other times I am like WTF???  How much more am I gonna get thrown at me.

My head and brain hurts in ways I cannot explain while doing the simplest thing.  Well simple for some people.  But my brain scrambled friends, you know Mental Fatigue!!!!
For example...only ONE person knows this, but here I go putting all my business out there....I mostly have no shame.  I do know the difference between left and right.  I really do.  But a majority of the time I have to think about what shoe goes on which foot.  Then I will put them on and still think they are not on the correct feet.  They feel fine, but look wrong to me.  So I will take them off and switch.  Then they feel weird and look weird so I know the first try was right.  Yeah, I am 31 not 4 years old trying to figure out shoes.
That is just one example.

But here is a random bit of things that have popped into my head.  See, I can be amusing and not Super Bitch all of the time. I do have some random happy ideas floating in my head.   Trust me you don't want to know the other ideas.  HAHA!  ;p


Bigger Penis? Enlarged Breasts? Refinance your home. You won a......, Mortgage lenders working for you, some man in Nigeria wants to give you a batrillion dollars. Enlarge your breasts/penis while you fill out your forms to refinance your home and the Nigerian will give you a batrillion dollars.  Gotta love spam email, this is a mashup of the kind of crap mail I want.  

What do cats and dogs do when they are left home alone? I bet they Salsa Dance.

Having a Jeep covered in Grateful Dead and Phish stickers next to a DARE to keep kids of drugs sticker is like Kettle One Vodka sponsoring AA

I was driving behind a School for the Deaf van.  That was all well and good until the driver started signing to the passengers with both hands while driving!   Ummmmmm….is that safe?  Really???  I laughed and was concerned all at once.  I let that van get waaaaaaaaaaaaay ahead of me.

So, on the way home tonight I was letting loose a torrent of curse words for all of the ass hole drivers out here. I said the typical asshole, assclown, and asshat...but then i let forth with ass pie, ass helmet, ass booger, and all different versions of ass you can think of. By the time I made it to my apt, i was cracking myself up. I think ass pie put me over the edge. I also think I need to get out more.

I love jumping in puddles.  Do I need a helmet now to jump in puddles?


Honestly, what if people did greet each other by sniffing asses?  I mean really,what if we did that?  That could be awkward to say the least.  Especially the day before someone has to have a colonscopy or the day of.  HAHA.


Ok, enough random for now.  I need to start writing my random happy weird thoughts down instead of being PIss pants all the time.  

Sunday, November 14, 2010

understanding needed

There are many many days I wish I was not Hoban 3.0 or whatever friggin version I am now.  It seems like every day gets more and more frustrating and I get more and more angry.

My neuro says it is because my brain is pissed off because it is not in its nice cozy cocoon like it is used to being in and likes.  And honestly I know that it is at least physically pissed.  I can feel my brain when I am thinking, concentrating too hard, etc.  It is so so so weird.  I can feel it pulse against the part of my skull that has a hole in it.  Talk about weird ass feeling.  And sometimes it is a sharp pain.  So as my brain is pissed because it is not cozy, I seem to get more pissed.  And more easily overwhelmed.  And quicker to cry, lose my words more, concentration is really shot to shit.  I seem to drive aimlessly and get lost even though I originally know where I was going.  I went to the grocery story about an hour ago, and I Have finally been able to do that.  But now, it rocked my world.  I got confused, and forgot what I wanted and had to constantly look at my list.  And was getting angry with people just existing and being at the store. So I guess those of you that ran away from me.  GOOD JOB thinking ahead so you wouldn't have to deal with the hot mess that I am.  Guess it is another EXCELLENT THING that I lost my job too!  
So for all the anger and sadness I am also scared.  I seem to be pissing off people left and right.  And am scared because I am changing and I don't like it one bit.  I mean I know I have changed since this as all happened, but I am changing now too in a weird way that I am aware of.  I dont like the anger, confusion, lost, sadness.  It's kinda getting nuts.

I am also kinda scared because what the fuck is going on with my insides???  Besides my brain all fucked up, and besides my galbladder going bye bye, and besides liver needing to be stented, there is now more crap going on.  Does this shit ever end?  Really, does it?  I mean I know I am bionic and radioactive with all of the tests I have had done, but I would really like this to end.

One day had my pee checked and it was all fine.  2 days later it is checked again and I have the beginnings of a UTI.  I can see the charting of what they check.  The numbers of the "bad" stuff they don't want in my pee go from trace/0 to 5 or higher.  Really???  Super cool!!
  Now have to go to a GI doctor.  Went to see one, she didn't really know what to make of me, and now I am getting a colonoscopy on Thursday.  I am calling Katie Couric so that they can televise it like when they televised hers.  Figured half my friends have seen my va-jayjay when I was in the hospital the first time, you all might as well see the insides of my asshole  :)  I have gained 20 pounds in a month.  Who the hell does that?????  I DO, because i am WW.  I can't fly now because my cape can't handle my fat ass.  :)  Thyroid was checked and that is ok...maybe they should check again since my body likes to play tricks on doctors too and change daily.

Yes I do still toss in some humor I have to or I really would go nuts.

So this is a mass apology.  I am sorry I have been more crazy lately.  I really can't help it, I am off the hizook. After my plate gets added the neuro said that should help because the brain wont be that pissed off.  Here's to hopin my diamond encrusted plate is awesome and saves me!!!

Friday, November 12, 2010

The real effects of TBI for the high functioning brain injured.

I am going to say right now that this will be full of foul language because I am so frustrated and annoyed and just need some shit to be done.

All of the things I have posted on facebook for you all to read are true about TBI, what can happen to the survivor the medical issues of memory loss, etc...yeah it does happen.  But there is some more.

Did you know that apparently your body will fall apart from top to bottom in a slow teasing way??  And in that process you will lose your job.  Yeah, I was on the beach when I took all my time off of work.  I was relaxing on the beach drinking a Pina Coloda for 4 months not recovering from a Traumatic Brain Injury which I almost died from!!!!.  And then when my galbladder randomly crapped out I was in Ireland dancing with Leprechauns and getting smashed off of whiskey and beer, not having Bile explode into my body and end up in the hospital for 8 days because I had to have a stent placed on my liver because I was critical!

You will also be known pharmacists on almost a first name basis.  When they see you in the neighborhood they will say hi to you.
  The parking attendants at 2 hospitals will know you and say hi to you and comment if you are not looking particularly well one day.

You will suffer from depression because your life was taken out from under you in a slow way.  You will be bitch slapped because you thought life was getting back on track but then your body craps out on you some more and you lose what you have regained of your life.

You will find out who your real friends are.  Yeah so FUCK YOU to those of you that were my "friends" when I was in the hospital either in a coma, or in a drugged state, or still out in left field, or kind of coming back to normal but still not quite there yet.  So yeah,  THANKS for being there for that and not around now when I am a fully functioning (minus a job and a skull flap) human being that could REALLY use some damn friends now.  I need a social life, I still want a social life, I still want some of my old life back.  Guess that wont happen.  Guess my life is left on a street in Shadyside Pa along with some of my skin from when I skidded 38 feet down the street after being flung from the motorcycle.  Or maybe my life is with my jeans, shirt, bra, and underpants that I had on that night.  I would be interested to see where all of that has ended up.

Other things will randomly fall apart with your body too.  I now have a UTI and my friggin neurosurgeon called me to tell me that.  How random is that???  And I go to a gastrointestinal doctor now.  Guess who is gettin a colonoscopy now????  Yeah My ass is getting ready for it's close up.

Am I angry???  You bet I am.  I am angry at myself, the SOB who put me in this position, and my so called friends.  Or people who were a huge part of my life, whether work wise or social life wise.  I am mad at you. You should know who you are on both aspects.  Yeah a lot of times i have to get my anger out this way and not face to face because A.  I dont see the people I am mad at, and B, it is hard for me sometimes to have a normal friggin conversation because I lose my words now.  Especially when I am upset!

And so after I get my plate in my head.  DECEMBER 8 if my infection in my urinary tract goes away, I need to heal from that super fast because I need a damn job because I need health insurance.  I cant pay for COBRA all the damn time.  And I am going to have to get over my apprehension of getting a new job and having to learn new things and having to explain to people that I am not retarded I have just had my brain re-arranged.

Ahhhhhhhhhhhh....who needs psychotherapy and meds when you can get it all out on Blogger for free???

Monday, November 1, 2010

brain scramble list.

I know i joke about some of my issues, things I may be feeling or doing since my scramble.  But check this list out that I got from a brain scramble website.  HA!  I am not making up the new version of me.  :)  There are minor differences between Mild Traumatic Brain Injury and Severe Traumatic Brain Injury.  I will go with the STBI list since I was severe.  Yeah, my high functioning ass was severe.  Well, my brain was, not sure about my ass. :)  I am gonna add my own comments to some of these.  


  • Attention - Huh, what now oooooh......look there is something over....wait what was I supposed to be doing, oooh dishes need washed let me text someone and get on facebook and look at the leaves blowing OMG its my favorite song on the radio.
  • Concentration
  • Distractibility
  • Memory
  • Speed of Processing - Hello slow like an old computer.  
  • Confusion 
  • Perseveration - yeah I perseverate.  Obsess over things, think about it until I do it accomplish it, or talk about it.  So glad I know the mental health lingo too so I diagnose myself.
  • Impulsiveness - I am leaving this blank. I am not Impulsive at all.  I dont impulse shop, impulse meet people, impulse drive, impulse text etc.
  • Language Processing
  • "Executive functions"
Speech and Language
  • not understanding the spoken word (receptive aphasia)  I understand the words though sometimes I get confused by the point that is trying to be made.
  • difficulty speaking and being understood (expressive aphasia)
  • slurred speech
  • speaking very fast or very slow
  • problems reading
  • problems writing
Sensory
  • difficulties with interpretation of touch, temperature, movement, limb position and fine discrimination.  Hello no tolerance for heat and cold
Perceptual
  • the integration or patterning of sensory impressions into psychologically meaningful data
Vision
  • partial or total loss of vision - Goodbye upper peripheral vision it was nice knowing you for 30 years
  • weakness of eye muscles and double vision (diplopia)
  • blurred vision 
  • problems judging distance Have a bitch of a time parking now for sure or maneuvering shopping carts telling how close or far I am from people
  • involuntary eye movements (nystagmus) EYE TWITCH!!
  • intolerance of light (photophobia)
Hearing
  • decrease or loss of hearing- like being born deaf in one ear wasnt a bitch enough and now I have been going to the ear docs for my hearing ear cuz the hearing is worse now.  AWESOME
  • ringing in the ears (tinnitus) YUP
  • increased sensitivity to sounds
Smell
  • loss or diminished sense of smell (anosmia)  - nothing smells the same.  I miss the smell of men cologne.  I am afraid to eat yogurt or drink milk sometimes because i cant tell if it is good or bad
Taste
  • loss or diminished sense of taste - things dont taste the same for sure.  Most times things taste super salty.  Chocolate and candy and whatnot doesnt even taste the same.  Neither does coffee.  :(
Seizures
  • the convulsions associated with epilepsy that can be several types and can involve disruption in  consciousness, sensory perception, or motor movements
Physical Changes
  • Physical paralysis/spasticity
  • Chronic pain
  • Control of bowel and bladder
  • Sleep disorders _ yup, havent really slept since October 6 2009
  • Loss of stamina Napping is a new hobby.  I try to do some thing I try I try and sometimes I just fade away
  • Appetite changes
  • Regulation of body temperature _ yeah my base temp is not 98.6 any more.  LOWER.  and I cant tolerate heat or cold now.
  • Menstrual difficulties
Social-Emotional
  • Dependent behaviors - luckily not on drugs or alcohol (yet)  I say yet because  it could happen but I hope it does not.  But I am dependent on people and social interaction though alot of times i dont want to be around LOTS of people. 
  • Emotional ability
  • Lack of motivation - Hellz yeah.  I need to motivate myself to start working out again and to clean and to try to go to grocery store
  • Irritability - YES most times I am irritated with myself and my new "faults"
  • Aggression - verbally for sure and i am at the point where I dont care really who I piss off
  • Depression- YES since my life is change without my consent.
  • Disinhibition- YES YES YES,  LOL, that is all I am going to say on this one.  
  • Denial/lack of awareness- Oh I am hyper aware,normally of my faults and minor deficits.  I have got to stop beating myself up
Those of you that know me can pick out what I have now.  Yes again, I know I am lucky to not have them all.  But life still stinks since the scramble.  Yeah I am alive, but I still don't concur with my day to day life.

My mood goes everywhere now.  I have been feeling dizziness sometimes or just the feeling of things moving when they are not. HELLO Vertigo, not nice to meet you.  I am losing my words more.  I actually feel mentally fatigued now when I feel I need to think too much or concentrate too much.  It is such a weird feeling and it kinda makes me miserable.  SORRY MIKE!!!!!

I know the year mark is the sign for "recovery"  that is just when the most happens but there are still things that I need to improve.  There will always be the back steps.  But it is what it is.

Friday, October 29, 2010

blah blah blah

I just feel the need to write but I don't know what to say.  Lots going on in my world and some of it I cannot make public just for people's privacy.

Today I saw 2 kids that I knew in my past life, my Hoban 1.0 life.  Boy looked at me and I smiled at him and then he got a huge smile on his face and ran up to me hugged me and said "I didn't know you until you smiled you have a good smile Miss Kara"  It's shit like that I miss on a daily basis.  Unconditional love from kids no matter how "bad" they are.  He was so excited telling me he is in first grade now and not kindergarten and he is 7 not 6 any more and he is trying to be good and misses me. I truly am super popular with the 13 and younger crowd and the 65 and older men.  HA!!!  Guess I need to open a spot for kids and old men to hang with me.  Wonder Woman's House of Acceptance.  I will need a body guard for the dirty old men though. hahah!!
Saw another little girl today and she looked at me, walked away and then came up to me and asked why I was different.  I said I was not and she said i looked different.  I said it was because i had more hair now.  And then she said she did not know me any more.  Said I am the same person and I still love her and I just look different doesn't mean I am different.  She then hugged me and said I was bomb!

Take my job away from me doesn't mean I am not still gonna talk to the kids or help the kids if they see me in the community.  I can still do life skills and not get paid for it.  It is part of my core being, part of ME, I may have broken my brain but the part of me that wants to help kids is not gone.  So suck it!

My mood has been going everywhere lately and I truly thank the person that has been putting up with me on a daily basis.  I am erratic now, random, getting angry, sad, and happy.  HELLO CRAZY!!  :)  Not crazy, just trying to still find my new normal which is really friggin hard to do.  I know people are gonna say there is no such thing as normal, but I need some normalcy, some pattern, some daily activity, etc.  The autistic part of my new brain needs normal.

At this time last year I was still in the hospital.  This will be my first Halloween in this apartment.  Kids that I know have said they are going to try to find where I live.  So I bought candy just in case.  This should be interesting if they find me.  I have a feeling that if they find out where I live I will be having random visitors at random times.  HA!  At least I have clearances and can prove i am not a killer or child abuser if people freak out.  HA!  But honestly, this will be interesting if kids figure out where I live.  Not sure how I am gonna handle this.  Hopefully they don't find me.

Yeah this is like my public "Dear Diary"  Just verbal or written diarrhea I have tonight.  Need to get some stuff out there.  Helps me, helps me sort things and helps me make some of my shit public obviously. Since some people don't talk to me anymore but I know they read this stuff.  Again, am I really that scary since the scramble?  I am essentially the same person.  Maybe a little more verbal about some things, a little more active on other things, a little more emotional, but I am still the same.  And lots of you don't even know the emotional aspect of me anymore since you don't friggin communicate or hang with me anymore.  Again, suck it!

Enough rambling until we meet again...
    WW

Saturday, October 16, 2010

This thing called life

I am trying this thing out called life.  Some of you may have heard of it.  It is this thing where you do things. Interact with people, do every day chores like laundry and grocery shopping and other things besides go to doctor appointments or sit in an apartment staring at the walls and crying,

It is not my old life, but it is my new life.  I am still working on a new life.  Trying to build one.  It helps that I have a great friend now that is also unemployed.  We spend the days together when other people are working.  And he understands if I am having an off day, a pissy day, an uncomfortable day, etc.  I don't have to apologize for me even though I constantly do.  I gotta work on that too.  I am me and I have to stop saying sorry for that.

I do greatly miss working.   I miss it so much I cry sometimes.  Aspects of my job were very frustrating but I did love my job.  Loved the kids and families and the differences and the ultimate sameness of the families.  I loved the acceptance and trust I was able to build with the families.  Sometimes it was hard being the Caucasian female in the African american world. I did not want to be THAT lady.  The white one trying to come in and save the day and change everything...etc.  I was the cool lady that came.  Mothers and fathers and extended family accepted me and welcomed me into their homes.  That was awesome!!  It is hard sometimes when I see the family members on the streets at the store, etc.  It hurts.  Sometimes I almost want to cry.  That is the biggest part of my old life  I miss the  most.  Sometimes I still see kids out in the neighborhood and they talk to me.  HI MISS KARA!!!!  and they tell me their problems and want me to "fix" them.  I offer verbal support and cheer them on when I can.

So part of this Life thing I am doing is that I am going to babysit 2-3 days a week.  Going to babysit for my neighbors granddaughter.  She is 3-4 years old.  That will be cool.  I will get the need for child interaction out of my system and I will get a little bit of money.  Between babysitting and all of the TBI research studies I am in I will be pimping.  :)  HAHAHA....or getting some money to buy groceries at least.

After my next neuro appointment Nov 11, I find out when I get my Diamond encrusted platinum plate.  So as parts of my life slowly come together and I get bits and pieces of good news here and there it helps me.  Helps so much.  Some day in the future I will be whole again, will get a job, will have self confidence, and will be my old kick ass self and I will conquer the world with my head held high!!!!!  I just need to be patient not A PATIENT.    

Friday, October 8, 2010

Happy New Year!....please

So the year has passed.  Had a few meltdowns and I am thankful for the people that were there for me and listened to me cry.

It is so weird to be able to pinpoint the exact day when my life changed drastically.  Big change that I was not ready for.  Change is hard when you are not expecting it, especially for my stubborn ass.  To be able to say, October 7 2009 is the last day I mostly remember of my old life of my "normal" life.  I can remember being at work at the school, sitting at my desk and then my friend calling to make sure were were still meeting at H for wings and Pens Hockey.  Yes we were still meeting.  I was so excited!!  PENS HOCKEY..woo hoo!
I kind of remember seeing A at H, and then I kind of remember being at WPT with A and his friend.  Things in between that I don't remember all that much.  The next thing I remember is days/weeks later at the 2nd hospital I was in.  A male nurse undressing me.  Let me tell ya, what a great first semi conscious memory!  :)

To be able to pinpoint the day in your life where you will not be the same from that day onward.  That you will have doctors appointments and surgeries out the wazoo.  That you will live at home for a bit with your parents, that you will be independent again, that you will randomly break again and have your galbladder taken out, that you will lose your job, that you will be walking around with part of your skull missing for over a month, that you will have to get a titanium plate eventually.  That you will probably ruin holidays again, that you don't even bother looking for jobs anymore because honestly who wants a broken ass person who needs to get more surgery and get her skull put back together again!  I am so sick of being a puzzle or a quilt.  Yeah I am always getting sewn back together!

To be able  to say that there was one Kara and now there is another Kara.  I know I am different.  I try to accept the differences, but I do get pissed too.  I still have my sense of humor, thank god I did not lose that.  But there are parts of me that are way different.  I may be a bit different, but I am still Kara.  If I can get used to the new me I don't know why some others can't.  People can have excuses for not being the same kind of friends we were before but I am sick of the excuses and call bullshit!  Some people need to man up!  Either still be my full time friend or just walk the hell away.  Let me know it is done and over with so I don't hold onto hope.

I second guess myself alot now.  And I am constantly saying sorry for everything!  I feel like I always need to apologize.  It annoys me and i know it annoys others.  I am what I am.  sorry.  :)

So for the year of shit I have had, and the partial shit I have had in 2010 i really need 2011 to be a good damn year!   I need it so badly!  So I am having a new years resolution now.

I will not get on a motorcycle.  (Easy one!)  I will try not to dwell on the past and will try to move forward.  I will try to not be so down on myself.  I will try to find the silver lining in all of this.  I will build up my self confidence.  I will try to mentally say goodbye to those that are no longer in my life.  I will try to accept the new me and my new life.

See, this is why I am starting my resolution early.  That's a lot to do and I need time.

Everyone normally sees the strong Wonder Woman Kara.  Almost all of you have not seen or heard the hott mess crying Kara.  The defeated Kara.  The Kara that literally rocks back and forth and shakes and cries.  Cries out of anger and sadness.  Sometimes Wonder Woman is a front.

And thankfully I write this all down, because honestly,  I will not remember my resolutions.  Hence my obsession with post it notes now.  :)

Pretty sure post-its were made for the brain injured.

Sunday, October 3, 2010

almost one year......surreal

So on October 7th it will be one year of scramble brain.  Well technically I guess it is the 8th depending on how you look at it, but it is the 7th for me.  The 7th is the last thing I remember.  I remember having plans for wings and Penguins hockey night with a friend.  I remember meeting that person out and then....well, lots of you know the rest.  I dont really remember much much more until about Novemeber 5th for good.  The day I was released from the hospital.  I remember bits and pieces of my hospital stays, but nothing is really in order.  Its like watching a movie that skips all around.

In that year I have had a total of 3 brain skull surgeries, gall bladder removed, stent placed on liver, stent taken out of liver.  Numerous doctors appointments, numerous needles and shots, different kinds of tubes hanging out of my body, whether it be a picc line or a jp drain.  I have been on numerous medications and have been taken off of numerous meds too.  I am known at 3of the hospitals here.  Hell, even at one of the hospitals the Parking attendant people know me.  I walk through some of the hospitals and nurses and doctors say hi to me.  Its cool, but not so cool at the same time.

In the year I have had some holidays that I dont really remember all that much of.  I just know i was probably not the happiest camper.  I have had my head partially shaved and caved in and had to wear a helmet since there was a hole in my skull.  Ironic I wear the helmet after the motorcycle accident.  I have a hole in my skull now from the bacteria.  Surgeons had to take a part of skull out,  but this time I don't have to wear a helmet.  THANK GOD!!!  ANd then on the 7th I have my cat scan to measure the hole and i have a docs appt with my neurosurgeon to see when I am getting put back together yet again!  I need to stop being taken apart and being put back together.  I am not a puzzle!!!

In the year I have had Physical Therapy, Occupational Therapy, Speech Therapy, Cognitive therapy, and neuropsych testing to make sure I was ok.  I have had a state driving evaluation to make sure I was ok for driving.  I have had tons of CAT Scans, X-rays, and MRIs.  I am totally radioactive now.

In the year I have gained new friends, I have lost friends, I lost my independence, I have gained my independence.  I lost my self esteem I regained my self esteem.  I got my job back I lost my job.

One of the things that I love the most about what happened to me is this.  Part of my job was working at a summer camp for kids with behavior problems/mental health diagnosis.  There was a little girl, 8 years old that  is TBI. I called her my mini me.  She was tooooo cute.  Finally one day I was having an off day and needed some time to myself and she came with me.  I said I had a headache and she said she had one too and said that she had a brain boo boo.  She didnt always come out and tell people that.  I looked at her and said, Hey baby I have a brain boo boo too.  She didnt believe me and then i showed her my scars.  Her face lit up.  She  didnt know of adults with brain boo boos.  She asked if a mean man beat me too :(  She asked if i failed kindergarten because I couldnt member my ABC's and 123's.  Then she said she wanted to be like me when she was old because I am nice to everyone and like everyone even though I have a brain boo boo.  That day and that moment gave me a purpose for my brain boo boo!  That she can see that she can be "normal" and that people dont need to know she has a brain boo boo.  I almost cried at that moment with her.

In this year i have had many ups and downs.  Lots and lots of downs.  I am sure I had lots of ups, but the downs are what stick with me.  Because they hurt the most.  hurt stays more than happiness.  That is a fact of life.

Now I am struggling again to find my purpose.  What do I do now?

As my one year comes up, it wouldnt be too too bad except for the fact that I now have to prepare for another surgery eventually.  That I am getting my CT that day and seeing the neuro to plan the next skull surgery.  I am like really?????  It has to happen on the one year mark???  Damn!  Make one friggin really bad choice and it comes back to bite me in the ass daily, but that day is gonna slam me!  It is just too weird that all that crap is going on on that day!  DAMN!  I mean if it wasnt for my mistake in the first place i never would have had that bacteria in my skull and I would not be needing to get a titanium plate in my head.

It is what it is, but hell, I am even getting sick of saying that.  And yeah, I know I have had many high points, I just need to stop mentally beating myself up.  But that is easier said than done.

Wednesday, September 29, 2010

it's the final countdown.....again! Ugh

Today my nurse is coming to take out my picc line.  Now that should be a fun feeling.

Tomorrow I have a 6-8 hour neuro ophthalmology appointment.  Yeah I Have been to a regular eye doctor but because I am wonder woman and have super power vision I have to go to a special eye doctor.

Then on the 7th I have my cat scan for the hole in my head and an appt with my neurosurgeon after that.  Then I find out when I get my diamond encrusted platinum plate in my head.  That day is going to rock my world because it is the one year anniversary of my falling down and cracking my head and basically making the greatest mistake of my life.  One friggin year and all this crap is happening on that day.  It is just too damn weird.  I mean I knew I was going to have to have a one year follow up.  But all this other stuff, the CT scan and trying to figure out when my next surgery is going to be is a bonus.  Oh the stuff I do to see my easy on the eyes neurosurgeon.  HAHA!!  The one year follow up in a normal world would just be checkin me, making sure I was mentally ok and did not have any major TBI issues like rage, major memory loss, bad cognitive skills, speech impediments, or any other shit that could have gone down with TBI.  That is why I call myself Wonder Woman.  I am not as effed up as I could be.  I am effed up for sure, but not as bad as I could be.

I hope this surgery is somewhat fast.  They technically want to wait 6 weeks after the picc line is out to make sure the bacteria is really dead.  I kind of want the surgery now.  Just order my hott ass pimped out plate and install it.  Get it done now and not in November or whatever.  I cannot stand the idea of ruining the holidays yet again!

Sometimes the guilt that comes along with this whole situation is the worst.  I feel like I say sorry over and over all of the time to everyone for all different things.  I am just sorry for it all.

Anyhoo, enough distracting myself.  The nurse should be here soon to strip me of my line.  UCKY!!!  Good stuff.  But hell, this shouldn't be too bad with all I have been through.  Bring it!!!

So this is the final minute countdown for the picc line removal.  And starting the final countdown for the rest of my doc appts coming up and for my re-birthday.  Re-Birthday is the anniversary of the beginning of TBI,  That is how some of us TBIer's roll.  I am gonna be 1 years old going on 32.  :)

Thursday, September 23, 2010

pieces of me

So I have had a few good days in a row.  Almost a whole week!  That has not happened in a LONG ass time.
I have even driven in the epic apocalypse rain storm we had here.  This is from someone who a few months ago could not even drive with the windshield wipers going.  They were mesmerizing and forget it if there was lightning.  It was all too much to look at and I could not pay attention to driving.  Maybe this time my brain was put back together the right way for driving.  HA!  I am still working on some deficits with driving but I am kicking ass for sure.

Still jobless, but it is what it is.  Just glad I have a peep now that also does not have a job so I have someone to talk to and hang with.  Maybe that has to do with my good mood.

And not that I always want to harp on and bring up TBI, but hey folks it is part of my life, it is part of me.  It is a big part of me now.  And FYI, the one year birthday of the new me is coming up on 10/7.  10/7 is the last day i remember so that is my anniversary even though the accident happened early a.m. on 10/8.  Oh well, one year of new me!!  But this rambling is about this.  I have a tbi friend that goes to support group and she sent me this and I am sending it all to you.  Some of this does pertain to me.  Please read it and remember this.


What Brain Injury Survivors Want You to Know
Complied by: The ‘Amazing’ Brain Injury Survivor Support Group of Framingham, MA


I need a lot more rest than I used to.  I’m not being lazy.  I get physical fatigue as well as a “brain fatigue”.   It is very difficult and tiring for my brain to think, process, and organize.  Fatigue makes it even harder to think.

My stamina fluctuates, even though I may look good or “all better” on the outside.  Cognition is a fragile function for a brain injury survivor.  Some days are better than others.  Pushing too hard usually leads to setbacks, sometimes to illness.

Brain injury rehabilitation takes a very long time;  it is usually measured   in years.  It continues long after formal rehabilitation has ended.  Please resist expecting me to be who I was, even though I look better.

I am not being difficult if I resist social situations.  Crowds, confusion and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it use to.  Limiting my exposure is a coping strategy, not a behavioral problem.

If there is more than one person talking, I may seem uninterested in the conversation – but that is because I have trouble following all the different “lines” of discussion and it is exhausting to keep trying to piece it all together.  I’m not dumb or rude; my brain is getting overloaded!

If we are talking and I tell you that I need to stop, I need to stop NOW!  And it’s not because I’m avoiding the subject, it’s just that I need time to process our discussion and “take a break” from all the thinking.  Later I will be able to rejoin the conversation and really be present for the subject and for you.

Patience is the best gift you can give me, allowing me to work deliberately and at my own pace, allowing me to rebuild pathways in my brain.  Rushing and multi-tasking inhibit cognition.

Please listen to me with patience as well, trying not to interrupt, allowing me to find my words and follow my thoughts.  It will help me rebuild my language skills.

Please have patience with my memory and know that not remembering does not mean that I don’t care.

Please don’t be condescending or talk to me like I am a child.  I am not stupid, my brain is injured and it doesn’t work as well as it used to.  Try to think of me as if my brain were in a cast.

If I seem “rigid”, needing to do tasks the same way all the time; it is because I am retraining my brain.  It’s like learning main roads before you can learn the shortcuts.  Repeating tasks in the same sequence is a strategy for healing.

If I seem “stuck”, my brain may be stuck in the processing of information.  Coaching me, suggesting other options or asking what you can do to help me figure it out.  Taking over and doing it for me will not be constructive and it will make me feel inadequate.

You may not be able to help me do something if helping requires me to interrupt what I am doing to give you directives.  I work best on my own, one step at a time and at my own pace.

If I repeat actions, like checking to see if the doors are locked or the stove is turned off, it may seem like I have OCD, obsessive-compulsive disorder but I may not.  It may be that I am having trouble registering what I am doing in my brain.  Repetitions enhance memory.  (It can also me a cue that I need to stop and rest.)

If I seem sensitive, it could be emotional lability as a result of the injury or it may be a reflection of the extraordinary effort it takes to do things now.  Tasks that used to feel “automatic” and take minimal effort now take much longer, require the implementation of numerous strategies and are huge accomplishments for me.

We need cheerleaders now, as we start over, just like children do when they are growing up.  Please help me and encourage all efforts.  Please don’t be negative or critical.  I am doing the best I can.

Don’t confuse Hope for Denial, We are learning more and more about the amazing brain and there are remarkable stories about healing in the news every day.  No one can know for certain what our potential is.  We need Hope to be able employ the many, many coping mechanisms, accommodations, and strategies needed to navigate our new lives.  Every single thing in our lives is extraordinary difficult for us now.  It would be easy to give up without Hope.

Monday, September 20, 2010

just me...raw

Bits of my life.

A home care nurse comes weekly to work on my picc line and to draw blood from me.  My blood needs checked weekly to make sure the infection I had in my skull is gone.  I don't know why I need to be checked for that all of the time since the part of my skull that was really infected is no longer in my head. Yeah, I have a hole in my skull now.  I am hard core like that.  That is why I eventually am getting a diamond encrusted platinum plate.  And I am gonna get it on the outside not the inside.  I am gonna rock that bling like no other!  I don't need grills on my teeth, I am gonna have a plate on my head!  AWESOME!!

I am still looking for jobs.  It is one of my hobbies.  But I am almost giving up.  Not quite, but almost.  I doubt myself lots.  Who wants someone that is half broken?  Honestly, who would want THIS working for them?  The good thing is, is that since i am labled disabled now if someone hires me that is not in the non profit sector I am a tax break for them.  So that is my spin.  To hell with my awesomeness, hire me because I am a tax break for ya!

One of the things that sucks the most about my particular TBI (traumatic brain injury) is the loss of friends/relationships.  Just when I most needy some of people in my life disappear or are forced to not be involved.  And some people have stayed around but it is not the same.  I know a lot of that rests on me because I am a bit different and kind of self centered now and the same things don't interest me that used to.  I feel like I always need to be doing something, not just sitting watching tv or movies or something.  That will change in time once I start being around people more.  I promise it will change.  It is just that when I am finally around people all I want to do is talk talk talk and do stuff since I spend lots of alone time.
It is common for people with TBI to lose friends.  Its just weird and sucks that is a common factor.  We all have different forms of TBI yet we all have lost friends.

I am a bottomless pit of needs and wants.

One cool thing is that I am trying to make new friends which is something I boycotted months ago.  I refused to believe that I was losing my friends and that I needed new people.  Plus I was afraid to have to explain myself if I did something weird or repeated myself lots or something else tbi related.  But I have self esteem back now.  I don't give a shit what people think of me anymore.  Take me or leave me, I am what I am.  So now I am throwing myself out there and meeting new peeps.  So far so good!  Hi new peep!  And for those of you that may have left me.  Your loss.  I thought it was my loss at first.  And I am not saying it doesn't suck, but.....your loss is bigger than mine.  I am awesome and don't you forget that!

Friday, September 17, 2010

Baby's big day out!

It was so bloody nice to wake up today with a purpose.  I had to get the car to the dealership for service.  That meant that I had to drive on the Parkway.  And I friggin did it.  WOOT!!  Was nervous as hell at first.  Got sweaty palm disease.  HA!  Thats what happens when my nerves are shot!

But it was nice to wake up and shower like I was going to work.  I had something to do besides develop a more meaningful relationship with the walls.  Me and the walls are an exclusive couple.  Though there are lots of walls. I guess I am a wall slut.

And before I left the UPS man came to deliver me some more drugs.  AWESOME!  Believe me, somedays I wish it was the fun drugs.  Imagine what those could do to my scrambled brain.  Those of you that know me...just imagine what I would be like.  Can you say off the hizook hysterical I am sure.

As you can tell, since this is somewhat amusing I am in a decent mood today.  Yesterday pretty much wanted to blow up the world.  I put on a good front on the phone or via text etc, but I spent the day having a woe is me pity party I hate everything and almost everyone day.  Those days are friggin great!!  Those are days I am glad I am not employed just so I can be miserable in my own damn way.  But that was yesterday and today is a different day.  So far happy happy happy and I am gonna roll with that.

Wednesday, September 15, 2010

Meaningful relationship with my walls

Yesterday I spread out my fun by going to the grocery store during the day and then at night I drove over to the bank and deposited a check and then came home.  Gotta spread out the excitement.  The best part was at the store 2 people asked me if I had cancer.  At first I thought maybe my partially bald C spot on head was showing, (not that I care) and then realized it was my picc line they were referring to.  Really, who the hell asks people that!!  WOW, that was RUDE.

Then last night I wrote a letter.  An angry, snarky, pissy, thick with Kara sarcasm kind of an F you letter.  It is not going to the recipient as is.  Once I center myself a bit it is getting edited and going out.  Hey for someone with TBI and impulse issues thats a big step.  But I would LOVE To send it as is to the person it is meant for.  Hell, this person screwed me hard core and is now seemingly afraid to talk to me.  Hell, I am not THAT scary.  And no, this letter is not for the person whom I was in the accident with.  It is for someone who has hurt me in a different way and this time I don't get the luxury of being in a coma for some of it.  Yeah, who would have thought a coma would be a luxury!

Through all of this I have developed a deep and meaningful relationship with my walls....again.  In the winter from hell when I was trapped for days and days and days I actually made a face on my wall.  Cut out eyes and lips and used the thermostat as a nose.  LOL, at least I am creative.  This time I have not gone to such extremes.  But me doing nothing is not me at all.  I used to always be go go go go go.  Now it is not so much because of limitations but just lack of places to go or  lack of people to go with.  I would still like to know what the hell happened to some of my friends.  Some of my close friends and then some of my work friends.  And I don't care if both sets of friends read this.  You need to know I am annoyed with you.  WTF????  I am still me, I still like to have fun, I still like to hang out, I still like to talk, I still like to laugh and smile and I still like doing other stuff.

Monday, September 13, 2010

Yakkity Yak

So today I started my day talking on the phone with someone I never met before.  She is me, but in another state.  We are the same person.  It is so cool.  She also has brain injury and we bonded on the support group site and have gotten closer and closer.  It is so cool.  We understand each other.  She is high functioning brain injured too.  We seem to have some of the same deficits and frustrations and the same wicked sarcastic sense of humor!!!

Then I had to get off of the phone with her because my home care nurse came in to take my blood and check my picc line and all the other cool stuff that hard core cool 31 year old females need to have done.  And my nurse is me in scrubs!  Pale, freckles, another wicked sense of humor.  She is awesome, except for the fact that she is part vampire always taking my blood!  And I like her because she supports me in my career choice.  Or what I want to try to do since i am STILL LOOKING FOR A JOB!  (ok, I am going to get off of that subject because I tend to go off the banger)  At least I have some control and class.

Then I was on the phone with another friend whom I have never met before in person.  Yeah, I am jabber jaws with strangers.  Stranger Danger!!!  HAHA...see what happens when I am left to my own devices??  

It just sucks being a social being and not having a job.  I think that is one of the reasons I like my doctors appointments so much because then I am around people during the day when others are at work.  And I can't just sit and watch tv.  I cannot do it.  Well I have it on for noise as I live on facebook.  I am on FB so much because it is an activity.  It is not just sitting and staring at the tv, there are buttons to hit and different pages to look at etc.  Yeah an activity, but a lame ass one.

I now have the cleanest apartment known to man.  Cleaning is going to be my new hobby.  Maybe I will start a maid service.

I am actually proud of myself for one thing today.  I went balls to the wall and took myself on a drive.  Yeah for most "normal" people that would not be a big thing, but for me that was awesome.  Some background.  After my original injury I was not allowed to drive until I passed a State Evaluation.  I passed that eval and then we had the friggin winter from hell!!!!  I couldn't get off of my street if my life depended on it and i was too damn scared to drive.  Then finally I was driving, baby steps and getting more and more confident.  And then bam!!!!  My galbladder exploded and I was on driving restrictions because of the meds.  And then 2 days after I was cleared to go back to life BAM had skull surgery and was restricted because of meds again. And now I am working on building up my self confidence with driving again!  So yeah, I went for a random drive, with no real destination which is also a BIG step for me.  I normally have to have a route planned out and visualized before I can go anywhere.  But not this time!  *HIGH 5*