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
  • difficulties with interpretation of touch, temperature, movement, limb position and fine discrimination.  Hello no tolerance for heat and cold
  • the integration or patterning of sensory impressions into psychologically meaningful data
  • 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)
  • 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
  • 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
  • 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.  :(
  • 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
  • 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.