Saturday, December 31, 2011

goodbye 2011 hello 2012

A year of reflection and rambling by me.

For the first time since 2008 and 1979-1996, then 1997-2008 I have not had any surgeries! So one full year since my cluster fuck of breaking my head open and my life, I have not had any surgeries. That is a big accomplishment in my book.

I am not going to focus on the losses for once, I am going to focus on the gains.

In 2011 I have gained some self confidence back.

I have gained some more doctors. And for me the professional doctor stalker this is awesome.

Change does not rock my world and make my head explode as much as it used to.

Independence again.

I gained a mother friggin job! Much needed and think this has helped with the self confidence and the ability to handle change.

Weight. Damn you weight, you need to go away in 2012.

Work acquaintances and friends. I needed this. I needed people and this has helped with a majority of the depression going away. The depression is one loss I am willing to bring up right now. Now back to the gains.

A greater love for my father. We actually say I love you now. We never did that before.

The ability to realize I am a hell of a lot stronger than I ever thought I was.

Being able to sometimes ask for help. I cannot always do that, but I can do it at times. My stubborn ass and the rest of my body always hated asking for help. Thought it showed a sign of weakness but now I know it's actually a sign of strength.

A boo here and there. LOL. Maybe I can find one that sticks in 2012.

As 2011 closes the biggest loss was my mother. That was like a kick in the heart, back, head, and ass. The one thing I will always always remember...and I wish my short term memory was shittier at times due to this one moment. In January of 2011 when she was in the hospital the doctors asked if she had any stress in her life. She said that she did, that her daughter was in an accident, is a brain injury survivor and was close to death and was still having some issues and just got back from another brain surgery. It is true. In December of 2010 I had my last brain surgery, and then mom was in the hospital for complications. I know my accident did not cause her cancer, but I felt a twinge of guilt. I know stress of me did not cause the cancer to worsen, but still, I will always remember her saying that. :(

As for 2012 here is what I want to try to do.

Take over the world.

Seriously look into and try to figure out financially, sanely, safely trying to go to school part time for either nursing or Patient Care Technician.

Stay off of motorcycles.

Try to have some more fun. I miss fun, I really do.

Try again to let go of my old life. I have to stop comparing this life to my old life. I have to embrace what I have. Easier said than done, but I will try.

Try to keep a boo. Yeah, I'm harping on this...but Wonder Woman needs a full time man. LOL. too hard to remember things about one then move on to another then another. Give a girl a break. lol

Finally get my invisible jet out of the shop. They have been working on that for like 2 years!! I need to get it to another Invisible Jet mechanic and maybe they can fix it. I'm sick of this driving shit like a normal human. :)

Goodbye 2011...hello 2012. Please please bring all good for me. I need good, I deserve good. I do enough good for others so can I please have a chance?

Wednesday, November 30, 2011

Where is my semi-charmed kind of life?: 6 month review

Where is my semi-charmed kind of life?: 6 month review: I received my 6 month review from my supervisor. For someone who for a year struggled with the fear of having to figure out how to get a jo...

6 month review

I received my 6 month review from my supervisor. For someone who for a year struggled with the fear of having to figure out how to get a job, I ROCK!!!!

For a year after getting canned I was so scared of trying to figure out how to get a job. I was not able to answer questions. I was having too many doctor appointments. I was getting tired way too fast. I could not concentrate on one thing for very long. I could not handle being in or going to new places. I was afraid I would do something dumb. Would I repeat myself too much?? Would my scars on my head show? Would I be in too much pain? Would I get angry over something and flip out? How the hell was I supposed to get a job if I couldn't answer a question such as "How are you doing today?"

I had some interviews, didn't get those jobs. Had an interview for a job I thought I would love, got the job and pretty much within 3 days I was over it. HATED IT...and I was full of so much anxiety. How was I supposed to do this? I needed a job, but I despised the one I got. I knew my anger was getting out of control just in the 3 days I went through training with this particular job. And then wouldn't you know UPMC calls me and offers me the job I figured would be better for me. YAYAYAYA!!!

Somehow I went from not being able to answer questions to acing interviews. And now I have a job that I rock at! Sometimes I get angry, I have only flipped out once. Not at a patient but at a nurse and nursing assistant. I deal with the unknown daily. I get asked questions by doctors, nurses, patients, and families. I somehow am able to deal with all of this without having meltdowns. Some days are crazier than others. And believe me I feel it when I am driving home and ready to crash and burn. Here is an example of a crazy day. I get to work and am assigned to work the Traumatic Brain Injury unit. I am working, getting in my groove then all of a sudden I am pulled and have to go to the ER. In the ER I am with a drunk and disorderly patient. Then I get pulled and am told I need to go to the Detox unit. I get to Detox and am working with someone that is going through the tremens stage of detoxing. Delirious, angry, flight risk, swinging...and then all of a sudden I am pulled to go with a child in the burn unit. See, change change change....walking all over the hospital getting from point A to B to C to D. And doing it all in record time and not getting lost.

I got my review and I basically kick ass!!!I got solid strong performer on every section.

Kara is able to maintain direct observation of her patients and report all needed information to the RN on duty and the patients doctors.

Kara is very polite and enthusiastic about every patient that she sits with. She is able to maintain a positive relationship with everyone she meets.

-Takes responsibility for own actions
-Recognizes own strengths and weaknesses and seeks/accepts constructive feedback, incorporating it into work
-Exhibits objectivity and openness to the view of others, including patients/families
-Considers, and takes appropriate actions, based upon the perspectives of diverse populations
-Adapts to changes in the work environment and appropriately incorporates new information
-Effectively deals with pressure and uncertainty
-Deals effectively with a variety of people, personalities, and cultures

Kara has been a very positive and enthusiastic member of our team. Kara is able to provide a safe environment for our monitored patients. She maintains a positive relationship with everyone she encounters. She voluntarily makes great use of the patient monitor activity program. I look forward to having Kara continue her employment with UPMC.

That is just a snippet. I don't want to bore you all with my awesomeness!!! But seriously, from a girl that was petrified, scared, anxious, confused, angry, easily flustered, etc, I kick ass. My work brain is awesome. Now if I can just get my work brain into the rest of my life. :)

I was struggling to get cognitive rehab and was getting denied because I was not severe enough, I was high functioning. So I shut down and had a few meltdowns then put on my big girl panties and went after the world instead of the world always knocking me down. So now I am an employed, kick ass brain scrambler. I am by no means perfect, I am not what I was, but I am what I am now and I am almost ready to accept this version.

Wednesday, November 23, 2011


Tis the season of thanks. I have been kind of thinking about this. So here goes nothing.

I am thankful to be alive. I may be frustrated and angry and upset about this life, but it is a life...I am alive. I could be dead or vegetative. I could be more severely disabled, I could have lost all of me. I say I am version 2.0 but I am not that far from the original.

I am thankful I have a job. The year unemployed and having immense fear and anxiety and self doubt of ever being employed again were not good. That year was the pits. It was depression at its finest.

I am thankful that I have an amazingly awesome father who has been there for me when I almost died, and helped me when I was trying to come back to life. He has supported me, and cheered me on and has put up with and learned to love all my different versions. If I could, I would give him the world. But I have the feeling being alive is more than enough for him.

I am extremely thankful that I did not lose the part of my brain that deals with long term memory. If that part was damaged I would have lost all memories of my mom..and memories are all I have left of her.

I am thankful for my friends that trust me with their son. To some people, it would be no big deal. To the original version of me, it would be no big deal. But to this version it means a lot that they trust me. I know I am capable, I know I am better than I give myself credit for, but it really does make me feel good that they have trusted me and do trust me to be in charge of their son.

I am thankful for the friend I have made after my brain scramble. He puts up with the best and worst of me. He has seen me at my lowest my most confused frustrating moments of myself. He puts up with the good, bad and ugly, and the sarcastic smart ass I am. :) He has nothin to compare me to, never knew the original, but he has seen my progression from what I was a year ago to now.

I am so very thankful for my facebook brain scrambled family. We all understand each other the way no one else can. Without them, I think I would feel more lost than I do feel.

Thankful that I am slowly gaining confidence, I doubt myself less, and I am trying to find a balance in my life. I am not 100% of what I was, but I am 90% of what I am now. I need to shake off some self doubt, become more confident, stop having so many damn doctor appointments and I will be 100% of this version.

I am thankful that in 2011 I did not have any surgeries. Since 2009 I have been having no less than 2 a year. That is a record I am glad to break.

I am thankful that I am still able to articulate well via writing. I still get the best of me out when writing rather than speaking. But I am so glad I did not lose this skill. So thank you all for reading my ramblings the past 1.5 years.

Thursday, October 13, 2011

I should have been a stamp collector, it would have been cheaper than doctor collector

2 years of ups and downs and all arounds and doctor collecting.  Seriously, if I was a better nerd I would have collected stamps.  At least I could have sold them to other nerdy collectors and made money instead of spending money out the wazoo for co-pays.
In 2 years I have/have had:
Physiatrist (rehab doctor)
Primary Care
5 Physical Therapists
3 Occupational Therapists
2 Speech Therapists
2 Neuropsychologists
Infectious Disease
Ear Nose Throat
Neuro Ophthamologist
2 Audiologists
Home care nurse
And the newbie to the list is
 Pain Management.  Welcome to the team!

I think that is everyone.  If I have missed anyone, I am so sorry, no feelings hurt.  I did not do it on purpose, I have TBI.  Hell, its impressive I came up with all of that in the first place.

If anyone is in need of any of these kinds of doctors I will sell mine to you for $45,000 a piece.  All of them except my neurosurgeon and Primary care.  They are easy on my eyes, so let me have my fun while I have to have them on a team for me.

Please don't try any stupid stunts at home in order to try to be as cool as me to have all of these doctors, nurses and therapists.  It takes a ridiculously strong willed person and a very stubborn person to put up with this kind of horse shit and not let it completely knock you down.

To say I am frustrated is an understatement but I guess getting a pain management doctor is better than the alternative of surgery again.  Though I did say to my neuro that he is disappointing me since I have been aiming for a minimum of 2 surgeries a year since 2009.  But so far in 2011 I have not had any surgeries!!  Hopefully, this will become my new normal again.  For a while surgery was my normal, I kind of like the change of no surgery.  Though I will be honest, I miss the awesome drugs after surgery! :)

It is what it is, right folks?

Monday, October 3, 2011

Reflections of 2 years

2 years ago I was still working at the schools with the at risk kids.
I had more friends.
I was lusting after one guy.
I was hanging at the bar a lot with David and Brad
I was lusting after another guy.
Play on playa!
I was bopping around life like a single crazy 30 year old woman
with no idea it would change drastically on 10/7/09

I got on a motorcycle and life got flipped turned upside down.

In 2 years I have gone through hell and back multiple times, but I never stay in hell.  I keep on going.

I have had 5 different surgeries, 4 on the brain.  I have been transported back and forth from hospitals and Western PA and Eastern PA too many times to count.  The mileage my parents must have put on the cars must be phenomenal.

Hospitals have become my comfort zone.  And that is why I now work at one.

Friends have visited me, friends have texted me, friends have dealt with my emotional highs and lows.  Friends have taken good care of me and made sure I kept my sanity.  So thank you Shannon and Will, Marieke and Rich.  And a special shout out to Mike who met me after my brain scramble and still put up with me and dealt with my outbursts and craziness and did not leave me hanging friendless.  And thanks Mike for pushing me out of my driving comfort zones.  That has helped immensely!

I have gotten a bit better with hurt of the loss friends, but sometimes it still kicks me in the ass.  I miss that part of my life immensely.  The going on hikes, the going to a certain bar, the going on random drives, the drinking on the deck, just the general hanging out.

2 years in the brain injury world is still nothing.  I am still a baby in this world, but a damn advanced baby.  Even at a 6 month follow up with my neuro, I vaguely remember him being shocked with my progress.  At that point I was where people that are normally a year to a year and  a half into TBI.   How I have been so lucky to be where I am today is beyond me.   I still feel broken in some aspects and that frustrates me.  But I do not feel as broken as I did at some points.  I know this is the best I am going to be and I have to let go of the past, but I cannot do it.  I truly want parts of the old me back, the original me.  But I do like some aspects of this me.  I am what I am.

I still have anxieties, I still have fears, I still have minor medical stuff.  I just have to keep pushing myself.  I still have issues figuring out left shoe, right shoe when putting my shoes on.  I still sometimes get flustered driving.  But I have improved greatly from what I was even a few months ago with my driving.  I still occasionally get overwhelmed at stores.  That has to do with  my impulse issue of wanting to buy everything I see.  I am easily influenced by marketing apparently.  And shiny things, but what female isn't?  But at least I can handle stores now on my own.  At one point grocery shopping was torture!!  Freaked me the hell out.  At one point getting gas for the car was anxiety inducing.

At one time not too long ago I was trying to get cognitive therapy so I can handle the world and try to get a job.  If you asked me a question I could not answer.  It was like my brain was on super speed cycle trying to figure out how to answer a question.  Sometimes I still have issues with that, mostly I need specific questions, but I can handle it now.  Being able to answer questions led me to getting a job.  And since I could not get cognitive therapy (I apparently did not really qualify WTF?) my job has been my cognitive therapy.  It allows me to handle change, the unknown, to think on my feet, to have a quicker reaction time.  Basically to be the wonder woman I am.

Thank you to those of you that have stuck with me through thick and thin, Thanks to my Mom :( and Dad for always being there for me and not giving up on me when I wanted to give up on myself.  And thanks to my Mom who is still finding ways to help me.  AMAZING!!!!!

2 years with many many many more to come because I rock at this thing called life!

Tuesday, September 6, 2011

I don't like mind games..please, they hurt

Today I get to work and the scheduler gives me my schedule and was excited because she likes telling me when I am going to my favorite unit.

And then she says this "I have to tell you a doctor told me you are great with the patients but that they don't think it is good for you to be working on that unit." "It's not your performance but they don't think it is good for you to be there." I went from ecstatic to being placed on that unit again to crushed.  Talk about highs and lows in a millisecond.   She said she did not know who the doctor was and that she thinks she is the only one that knows this was mentioned and that she won't say anything to anyone else.

It makes me back pedal and think of when I lost my job before.  I was able to work with my TBI and then gallbladder crapped out and I lost my job, "not due to my performance but my medical issues"  and then in a snarky argument my ex-supervisor/ex-friend  said I wasn't fired due to my performance but they did have concerns over my mental health issues after my accident.  I know I have issues, but if I am such a mental case would someone just outright tell me please?!?!?!?   Honestly, just frigging tell me.  I give up!!

I have basically just stopped second guessing my every move and got rid of a lot of my self doubt and then I get hit with this.  I teared up.  I hate people second guessing me and what is good for me.  I second guess myself enough I don't need support on this.  All day long this has been on my mind.  I am hurt and angry and confused.  Did I make a bad choice interviewing for this job?  Did I make a bad choice even applying for this job?  It is not the only UPMC job I applied for.  Hell, it is not even the only job I applied to, it just happens to  be the only one that interviewed and accepted me.  It is not my fault that I am on a unit I used to be a patient on and that some of my co-workers used to also be my caretakers, doctors, therapists.

Now I am trying to replay everything I have done on that unit.  Did I do something wrong?  Am I doing anything wrong?  Why was this said???  

There is one doc I am pretty sure I think I know said it.  He has been concerned about my safety since I have come to work there.  I have told him numerous times I would let him know if things got uncomfortable for me or if it got to the point where I can't handle things.    Since I have been there the only time i could not handle anything it has been on other units not my favorite TBI unit.  And all of the things except one have just been emotional things where people, women, Mothers were dying or the choice had to be made to let the person die.  It is still too close to my mothers death, so yeah, I have cried and asked for a time out.  I have never felt in danger with a patient that might be physically agressive.   I know my limits, I know what I can handle, I know when I am unsafe.  Should I just start wearing a helmet to work at all times??

I am just so confused, sad, angry, and overwhelmed by this.  Why was I told this?  I mean I appreciate she told me, she thought she was doing me a favor but this kills me.  

As usual, it is what it is.  I will just suck it up, put on my fake smiley face which is pretty much tattooed on, and just keep trucking along.  But now the seed is planted of more second guessing.  FML

Friday, August 26, 2011

what a difference time makes.

Tonight I did something kind of epic for me.  I am not overly excited about this but it is something I honestly never thought I had in me or would be able to do.

Physical therapy in the a.m.  Came home, did 2 loads of laundry, napped, went to work 3-11.  At work I impulsively thought "I should go to Wal-Mart after work"  Impulsive, yes.  But I did have a grocery list at home and I didnt really want to deal with grocery shopping on a saturday.  I want to sleep in for once.  At wal-mart on late friday night I should be able to do that.  Less of a crowd, less stimulation.  So, I went to Wal-Mart right from work after I got off at 11:30 and I went WITHOUT a list!  YIKES, this is asking for trouble.

Driving there I had to keep reminding myself where I was going.   I got there and took a few deep breathes, and tried to think of what I had on my list at home.

Shop shop shop!  Oooh...I want THAT!!!  No, I don't need that.   Oooooohh...look at that cool thing, I should get it.  NO!!!!!

So I bought what I thought was on my list.  Saw some things I was not thinking of in the store, but pretty sure I had on my list.

Did I impulse buy???  Of course I did!  I bought breakfast bowls, bananas, rice bowls, and tropical trail mix.  Hey at least I didn't buy a watch, pair of shoes, a giant steak because it looked good, a roasted chicken, and any other random item that Wal-mart could possibly want this impulse shopper to buy  And then I went home and put everything away and looked at my list.  HOLY CRAP, I bought everything I had on my list.  

What a difference time makes.  The first time I went to Wal-Mart after my brain scramble I could not handle it.  My friend had to drive because I still could not really drive all that well, especially if it was a high traffic area and it was somewhere I did not go to all that often in my before life.  So my friend and I were in WallyWorld and I just wanted to hide under a pile of clothes.  It was so loud, so bright, so much to look at, so many people. was a mess.  I hated it, i swear my heart was going to pump right out of my chest.  I don't think we lasted that long there.  And I have slowly gotten better with being there with all of the stimulation, but I have also been there with one friend or another.   Tonight was the first time I have driven there and tackled Wally by myself.


So, tired, hungry, out of my norm, after a long day, after work, I tackled Wal-Mart and WON!  See Charlie Sheen, that is WINNING!!

Sunday, August 21, 2011

driving long distances with my tbi

Driving driving driving.  I have gotten better, but driving long distances is tiring.  From Pittsburgh to my dads house is 316 miles.  It goes a lil something like this in my mind.
  Get in car, check gas.  get gas.  Get on road and go balls to the wall.  Turnpike, Turnpike, Turnpike, you are getting on the turnpike.  Go go go.

  Get to turnpike gates, pick a lane, what lane do I choose? What heads east the easiest, check all traffic, cars cars cars, pick a lane, get in line.  Get to gate..push for ticket.

   Go go go.   Merge on turnpike, car in front of me, car behind me, traffic coming my way, wait wait wait wait, focus look cars cars, is it safe to go is there enough space....Eh, I guess its ok behind me honks.  Shit, I guess I should go.

    Speed limit sign check, check my this ok?  Processing.
    Am I going too slow? Am I going too fast?  Processing.
    Car behind me getting closer..hope they switch lanes.  Processing.
   Speed limit sign check, check my speed.  Processing
    Construction signs, read read read, Processing,.
   What is the contstruction coming up?  Do I switch lanes?  Processing.
   What does that advertisement sign say?  read Processing.
   OOOh...look at that pretty car...stare stare stare...Shit Hoban focus on driving.  Processing
   Crap was that a cop?  Check my speed, do I hit brakes?  Am I going to get pulled over?  Was I going an ok Speed?  Processing!
   Ker-thump!  What was that sound?  What did I do?  Did i hit something?  Look around look around, Processing.  A big bug splattered on window.  Processing.  Put on winshield wipers.  Back and forth back and forth back and forth.  Processing.  Shit Hoban focus on driving.  Processing.
  Check gas do I have enough?  Processing
   Cars zooming by on left.  Am I going to slow?  Check speed.  Processing.
   OOOh..what does that sign say??  Read, Processing.

  See,  this is just a snippet of what it is like driving a long distance. This is just about the first 70 miles. This does not even begin to cover it, but I bet your are tired just reading this.  It's interesting experience for sure.

Friday, August 12, 2011

Rocking this thing called a job!

So today was PHENOMENAL!  I was on my favorite TBI unit.

Patient is a 31 year old male with a shunt, had multiple brain bleeds.  And well, he and I were partners in crime.  I was LOVING IT!!!  The doctor came into the room this a.m. and he saw me and was like "Kara, I can only care for one patient in a room at a time, get out!!"  This doctor was my doctor until he finally discharged me from his care in May of 2010.  He gets a kick out of the fact that I am a survivor and working at the hospital where I did my rehab.  He is so kind and always worried about me.
So the patient and I were chilling.  He kept trying to pull his tubes out and I would just tell him to chill and after a while he caught onto the prompt and would stop.  And then he kept trying to get out of his wheel chair even though he was strapped in and I would tell him to chillax and then he would stop.  See, I spoke his language!   And he always had to have music on so he and I rocked out!  Music has helped me since my injury so I understood him having to keep it on.  He was working on balance and walking today and was giving the Physical therapists a hard time about it so me and my genius broken brain was like "Hey Jay, lets show the therapists the Dougie"  (for all y'all that don't know, the Dougie is a dance that is out and kinda cool and to a hip hop song"

 So i bust out my phone and start playing The Dougie and low and behold, he started trying to do it.  Was by no means perfect, but who cares, he was TRYING and standing and keeping his balance.  The PT looked at me and said Holy Shit Kara!!!!  And the patient kept saying I am the coolest girl ever!  The PT then brought the one doc in to show him me and the patient doing the Dougie.  The doc just smiled and gave me a High 5!

  When the patients sister came to visit, we showed he how he Dougies.  She is a nurse at the hospital and told me she was going down to the nurses information center and requesting that I be with her brother every day since I am so good with him and I am what he needs!  :)

  At the end of the day on the bus to parking lot one of the aides from the unit that was an aide when I was a patient asked if I was a nursing assistant yet.  Told him no,but I wanted to be.  Said I originally applied for aide positions but was told that I was not qualified.  He said I should totally do it now that I have proved I can work as a brain injured person!  EEEK!!!!!

  So, I have the aide saying I should do that.  Have the one nurse on the detox unit that wants me to be a detox RN and always asks me if I started classes yet.  So basically I have the whole hospital egging me on with a good chunk of them knowing I am a brain scrambler!  

Wednesday, July 6, 2011

doing my thing, stalking doctors collecting doctors and building shrines to doctors


Ok, so as any good TBI survivor I am collecting doctors.  It's an un-written rule I believe.  It is something that they should warn us about in the early stages.

Well, this time I have actually collected another physical therapist.  This is my 3rd round of PT since waaay after the initial rehab.  I have gone for my random lower back pain.  I have gone for my jaw and face and neck pain.  I am now getting the whole back looked at.  It seems that falling down and going boom I not only cracked my head and rearranged my brain and broke a shoulder and a wrist I have also mis-aligned my back.  Now the aches and pains and numbness and tingling and walking with a not so cool swagger finally has an answer.  Hot neuro did an MRI of my cervical area a few weeks ago.  Just that part (thats the upper part of back/shoulders) and found out HEY I HAVE BULGING DISCS.  Awesome!!   He recommended PT yet again.  So the PT checks me and he actually said, "You are jacked!"  That cracked me up and then he explained.  Basically my spine is all twisted to the left.  And my upper spine, I do have bulges that practically go all the way to my ass bone.   And he cannot  do my PT with traction until we get my spine realigned, so today he cracked the hell outta my back.  And electrocuted me (EMS) and it all felt pretty good.  I think and hope after this I will be back to my graceful ballerina self,  :)  With no damn surgery.  I just hope no one gets the bright idea to MRI my whole back.  I mean as much as I love my hot neuro and love him sedating me and having his way with my innards, I would really like to not have back/neck surgery.  
  Pretty soon I see the Infectious disease doc.  I have only met her once after my surgery where they took out my skull piece.  I dont really remember her since I saw her after surgery and I was super duper drugged.  Gotta love drugs.  But I gotta see her and hope I am not infected again.  Since my hot neuro put me on antibiotics my head has stopped oozing and feeling weird.  Yeah, it was oozing...not so hot.  Welcome to my world.  And since being on the heavy doses of these meds and now feeling better I wonder if something was infected.  AWESOME.
  I have to stop now and continue my shrine building.  Taj Mahal has nothing on this masterpiece I'm working on!

Thursday, June 30, 2011

working 9-5. Nope scratch that....7-330 or 3-1130

Every time I drive into the parking garage at Mercy Hospital I think of the very first time I had to drive there myself after my accident and passing the state evaluation to drive again.  A few days before I had to have a friend drive me so I could envision a path to getting there.  Then the day I had to do it myself, I got in the car, started it up and started crying because I was so scared.  Mercy was out of my driving comfort zone.  I never drove there regularly pre-accident so therefor it was new and scary to me!  Crying and driving while already having driving anxiety is not a good mix.  And then when I got in the garage I was freaking out even more.  Would I remember where I parked???  Would I hit cars trying to drive through the garage????  And now I work there, I cry when I drive there now because it is too early in the a.m. J

The first week of working was rough. Especially the first day.  Getting lost in hospital, trying to figure out exactly what my job is.  Where the hell do I punch in?!?  After that day of work, I was a zombie!!!   Brain fatigue to the extreme!!  To the point where I was afraid to drive home.  I was so tired and having a hard time focusing!  Sure, it is still tiring, there are some days/nights where I am so tired I still am apprehensive about driving, but I am not sleeping over at the hospital unless I get my own bed back on the Brain Injury Rehab Unit.  Lol

The first day I was placed on the brain injury unit, I could not stop smiling.  It was sort of surreal being there as a worker, but it felt damn good and it feels weird to see the brain injury world from the working side not the patient side.  Sure, my brain injury did not go away I will always have it, but at least I am not a patient this time.  Some of the doctors, nurses, case managers, Physical Therapists, Occupational Therapists, Speech Therapists, Neuropsychologist, Rehab aides, recognized me.  I know they were not just playing the polite game, they remembered things about me so they really did remember me.  CRAZY!  And once they figure out who I am, the look on their faces is priceless.  The first couple times I was on the unit they called me Motorcycle or Helmet.   I was in a motorcycle accident and I had to wear a helmet on the unit because part of my skull was removed.  There are not too many helmeted patients, especially females, so I guess I am going down in history.  I like that unit because in a way it helps me.  I get to see what I was “like”  Not that I was exactly the way the patients are, we are all different, but I can get glimpses.  Stories my friends have told me, make sense now.  And I like being totally understanding of the patients.  I think I can help them more than the people that work the unit. I mean hell, been there done that!!  I can explain to the workers to slow down, to not bombard with too much information, to break shit down, to turn off the TV when talking to a patient.  ETC.  I ROCK!!!!

Working is good, it is helping me for sure.  Makes me realize I can handle change.  I can handle not knowing what I am getting into every day.  There is no pattern to the job, never do the same thing and I can handle it.  I don’t even think about it.  I just go in and do it.  I never know where I am being placed until I sign in, so I could be anywhere in the hospital, and I just go balls to the wall and do it.  Its hard, but it has helped me.  I am emotionally and mentally and physically exhausted but I do it.

They do use my strengths which is good.  I get placed in TBI rehab unit, detox, neuro trauma CCU, and with mental health patients A LOT!  I get asked if I am a doctor, counselor, therapist or a nurse.  I am none of the above, I am just mother fucking awesome and don’t you forget that!!  And I get that question from doctors, nurses, and therapists!  So that is awesome!!   I do more than I am supposed to, but I can’t just sit there for 8 hours and stare at patients. 
I get to know patients I take the time to get information about them to make them more comfortable.  I mean I have been a patient enough, I know how much it sucks, so I like to keep it real with the patients and just shoot the shit with them and make it feel “normal” 

I like the job, wish there was more I can do.  Seriously thinking about nursing.  Hell, UPMC would pay for me.  Gotta figure out if I can handle working first.  Then try to figure out how to get do school and work.  And then BAM Hello Kara RN and CBIS (certified brain injury specialist)  I am going to try to get certified in October for that!  Why??  Because I am mother fucking awesome!!!  Just sayin'

Tuesday, May 17, 2011

what doesnt kill me makes me stronger...I am the strongest woman ever!!!

While this is not brain injury specific, brain injury does play a role in this tale.

For a few months, I have been fighting myself (mentally) fighting the system, worrying for my mom and dad, and trying to live a life.  For a month or 2, I have said to my friends "I dont think my mom has long for this world."  On May 3 I grew a giant set of balls and drove home.  My mom was back in the hospital.  For most people this would be ok, for me it was EPIC.  It was first time driving across the state since my Brain Injury 19 months ago.  That was such a big deal for me.  I have the self esteem and self confidence of a gnat about lots of things, and me getting across the state was so AMAZING!!!!   Mom didnt know I was coming, and neither did dad.  SNEAKY I was.   Tuesday I got here, mom was able to understand that I was here.  I joked with her a bit, I am glad she was able to understand I made it here.  I needed to see her.  Ironically I was saying to friends I needed to try to make it across the state so I can prove to myself that I can do it, just so that the first time I did it would not be for a funeral.  So Tuesday I made it to Wilkes Barre, Friday Mom passed.  So I guess the first time I made it across the state was for a funeral but at least I did it without knowing it would be for a funeral.   Sad as it is, I do still applaud myself for making it.  Something like that has built my confidence a bit.

I am glad mom got to hear that I had an interview at UPMC.  I have heard from people that she was very happy for me and excited.  That makes me happy that I finally started sharing some of my life with her before she passed.  I kept a lot to myself because I did not want her to worry about me  or give her false hope that I was rocking at life!!  2 hours after burying her, UPMC called me with the job offer!!  I ran outside and screamed THANK YOU MOM to the sky!  2 hours in the ground and she was already busy trying to get my life in order.  I can imagine wee lil mom being up there raising hell, trying to get me some help I need.  <3 her for that!

Stress, sadness, emotions running amok and brain injury are not a good combination.  But it is what it is.  I was losing words more, using wrong words, totally not editing myself, being innapropriate (more so), and trolling for men at mom's viewing.  (LOL, yeah I was)  There was no filter on me whatsoever.

Mom's passing is just the icing on the cake of 19 months of hell for me....and now for my dad (more so)  Brain injury, 4 brain surgeries, galbladder out, losing my job, me being a general hot mess, mom diagnosed with cancer, mom passing.  Someday this shit has got to stop.  Though if it keeps on going, I really will be the strongest woman ever, no doubt about it!

Sunday, May 1, 2011

Life- Full Force

April has been busy busy busy.

Physical Therapy 2 times a week.  Fighting with unemployment.  Applying for jobs.  Getting physicals for a job I got, starting said job and having my head pop off.

I dont know if it is me, or if the job experience at this agency is as confusing as I think it is.  I get so flustered, overwhelemed, yet zone out, get frustrated, feel lost mentally and physically, yet it is what it is.  Can't live life by not living it.

After I accepeted this job I got a call from UPMC asking if I wanted to interview for one of the batrillion jobs I applied for.  OMG, talked about geeked.  It would be full time, with benefits.  In case y'all don't know, I NEED BENEFITS since going to all sorts of doctors really is my part time job.

I interviewed for the job and it went well.  They are going through the process of all the background checks.  I am geeked and anxious.  And don't bother telling me everyone gets anxious about new jobs.  I know, I have had new jobs before.  But this is a different anxiety.  Don't try to compare normal to brain injured.  I get frustrated when people do that.  I know you all mean well when you say things like that, but I do get frustrated.  This anxiety, self doubt, etc is way different than "normal".  I have to worry about things you wouldn't have to.  But like I been saying, I am going balls to the wall.  And if I get this job for sure and if I fuck up and fail and get let go or have to quit, at least I can then probably get disability.  Not that I want it, I do have some pride and I KNOW I can work if people can be patient with me and give me a wicked big learning curve.

Right now between Job 1, potential of UPMC job, unemployment and having to have yet another appeal for it, random medical issues, June 21st coming up (the big trial, trying again), mom being sick.  Finally basically telling 2 "friends" goodbye and fuck off, making new friends and then almost instantly losing them, I am on brain drain, emotion drain, balls to the wall fukitol.  I gotta do me.  So if I become more self centered I am sorry.  I am all about me, I gotta do me.

Saturday, April 9, 2011

The little things

I wish there were more real life people in my life.  I love my facebook people, but I need more real life people too.  Again, to harp on the same ol same ol, i really miss my friends I had before I decided to rearrange my brain and have a cluster fucked life.  D, B, M, D, S.  I miss you as friends.  Some day I may put in all of the letters of the names and really throw ya out there.  The real life people I see the most have PhD, MD, MSW after their names.  Or they work at Giant Eagle, Kmart, or Family Dollar.

I pretty much never liked weekends, even in my before TBI life.  I always needed  to be busy busy busy and now I need it even more.  But now I need it to celebrate the things in my life.  The things that to most people are normal occurances but to me are a pretty big thing.  I guess almost dying and having a brain rearrangement and trying to over come things,  makes things more exciting.

I used to text people when I had my first stand up shower.  I texted people when I was able to go to the grocery story without freaking the hell out.  I texted people when I got my first haircut.  I texted people when I drove at night.  I texted people when I drove in a thunder storm.  I texted people when I drove in a little teeny bit of snow.  These are major mother effin accomplishments for me.

I texted people and posted on  facebook about my interview!  I left with such a good feeling and then the next day to find out I had an offer was pretty THRILLING.  I just wish I had people to celebrate with.  I need to bring fun and joy back into my life.  I put up a front, but lots of times I dont find things really fun, and that is because I cannot let go of the old me, my old life.  I need to do that.   This is not a call for pity or sympathy, it is just stating facts.  Its just that every little thing is a cause for celebration for me and I dont really get to celebrate.  It is what it is.

Sunday, March 27, 2011

The more things change, the more they stay the same

Yeah it has been awhile since I have vented on this or used this, but things are different and the same.  Since the plate being added I am a bajillion times better.  Sure, I am not the original Kara.  I have come to accept this now.  I am me, take me or leave me.  I am almost fully accepting of myself.  It is what it is, right??  Motto of my life.

I am not 100% but that is ok.  I am doing the best with what I am.  Sure, I have some minor deficits now.  Stil make bad choices, have no impulse control, have dis-inhibition. Have some aches and pains, that I have had from the beginning, but now I am doing something about it. Now doctors seem to be more ready to accept when I say something doesn't feel right.  I guess saying for awhile that my head felt weird after my original surgeries and I didn't feel right turning out to be a wicked infection in my skull proved to the doctors that I know my body, I know when something is wrong.  I have proved my point.  Sure saying things don't feel right gives me more doctors and therapies and doctor bills, but I gotta look out for number one.  ME!!  I don't choose this life of doctors appointments, I don't choose this life of lost friends, lost self esteem, loss of a purpose, loss of social life, loss of fun.  But it is my life, rocking and rolling with the punches as they get hurled at me.

During this rocking and rolling with punches I have found some outlets.  I work out like a mo-fo.  Go to the gym a few times a week.  It is my form of socialization.  I don't talk to the people, but it feels good to be around people.  I was afraid to go the gym the first time.  Thought it would be too much to handle, but it isn't. I put on my headphones and rock out.  I get into a zone.  It is just nice to be around other people and not just staring at my walls.  And it gets out my energy and proved to me I can do things.  At least the gym is my outlet.  In the world of TBI, drug abuse, alcohol abuse, and suicide are common.  At least I am just addicted to the gym.

I have applied for tons of jobs, interviewed for only one so far.  But I did it.  I may not have gotten that job, but I at least did it.  Proved to myself I could, and that I would not fail at interviewing.  My whole life is trial and error.  I just try things and see if I can do it.  Sometimes, I can't but most of the time I can.  I am done limiting myself and being a poor,broken, woe is me, damaged goods.  I am a normal human just like anyone else.  Sure I have my ups and downs, and sometimes the downs really really suck but I do have my ups.  The downs hurt because I have had so many of them since my brain scramble, and I always think that if I was not broken they would not have happened to me or hurt so damn much.

The jobs I have applied for are all very similar.  Still trying to save the world.  Or help others.  It is what I do, what I was made to do,what I love to do, so I keep trying.  Come hell or high water someone will hire me!!  UPMC, the main hospital system out here will hire me at some point just to get me to stop applying for jobs there.  To date I have applied for 7 jobs there.
  Service Coordination at Psych Hospital, Patient Monitor, Nursing Assistant on Behavioral Health Unit, Patient Care Technician which is a nurse aide, Teachers Aide at hospital Daycare, Child Life Specialist at Childrens Hospital, Peer Support at Psych Hospital.  Are we noticing a trend here?  And then there are other jobs, all along the same line for other agencies.    I really really really WANT to work.  I have worked since I was 15 years old.  At age 14 I was a candy striper (Striper NOT at a hospital.  Before that I baby sat and helped my aunt at a boy scout camp.

I cannot do just any job.  I refuse retail.  But if I have to, I suppose some day I will suck it up and try.  But I have done retail before.  Waaaay before, and HATED IT!!!!! Hate hate hate.  I have enough issues, I know my limits and don't want to add to them by hating a job with a passion.  I know me, and I know if I get a job like that, I will spaz out and quit in a minute. I am balls to the wall in all sorts of ways.  And with my impulse control issues too, I could totally see myself telling someone off in that instance. At least I know my limits, and I think it is ok to try to get a job that I know I will love and that works with my strength of helping people.

I may harp on my life, forget to care or show concern for other peoples lives, like my friends that are left, but I am trying.  I am trying to learn me.  Wish people would tell me about myself in a nice way so that I can learn.  I know I suck at some things, but I truly am trying.  Pretty soon I will be 18 months old.  18 months since the accident, and then it is only 4 months since the plate.  4 months of the newest version of me.  Do you have any idea how weird it is to be able to say that there have been multiple versions of yourself?  The original, then the one immediately post accident.  Then the one when the skull piece was re-added.  And the one when the skull was infected.  Then the one when the skull was taken out.  Then the one when the plate was added.  I have been a different person each time.  Not multiple personalities, just different.  One thing that will stick with me is that the other day I was laughing or making one of my sarcastic faces or something and one of my close friends said something to the effect that I am back...I was making a face I have not made in a while a face like my fathers and my laugh was back.  That felt awesome to hear that!!!  Because I do believe this is the best most "normal" version of me, and when she said that I felt like crying because I was so happy to hear that.

To all of the friends I have lost, it is your loss.  But I am also sick of saying and hearing from others, "it is their loss"  I wish it did not have to be like this.  Some of you I would still like in my life.  I put on a tough act.  Bitch about it for a minute and then pretend its ok.  But lots of times I do cry about it.  In my own world in my apartment I do cry.  It is hard to explain it unless you have gone through it, but it hurts to lose friends.  If we got into a fight and I lost you as a friend, that I could understand.  But losing friends due to the fact that I may have been difficult to understand at one point, I may have been a bit different, hard to handle.  Or lost friends because I lost my job.  That all hurts.  It is all through no fault of my own.  And if I do have my weak moments, screw it.  I may claim to be Wonder Woman, but I am only human.  And I would dare you to walk a mile in my shoes, see what it is like.  But I am also humane, and would not wish this on my worst enemy.  Well maybe one person...and he is very deserving of this battle.

Tuesday, March 8, 2011

positively positive

Yikes, who is this chick posting something with the word Positive in it??  Could it be Kara or did someone hijack her account???

Seriously, I don't know what happened but this is honestly the best version of me.  Getting my diamond encrusted platinum plate is apparently just what I needed.  Maybe I should have had one of these when I started going through puberty.  Keep me even keeled.  LOL

We all know I am Wonder Woman, but I am seriously rocking life hard core now like WW.  Completely balls to the wall.  I am done with being weak, pathetic, and unsure of myself.  I mean honestly, after each surgery I was a bit different.  Unsure, unstable (physically), skull flap less Pissed.  I know the anger was off the hook.  I was all over the place with emotions.  Crying in front of people.  YIKES, who does that?!?!?  :)

Now I am driving without really thinking about it or over analyzing.  I am calling people to get my life in order.  Applying for jobs left n right.  Had one interview.   Realizing maybe I don't need cognitive rehab, I just needed my plate and time to get used to being plated.  Maybe the other times before being flapless I was feeling off and weak because I had that infection eating at my skull.  Makes sense if you think about it.   So maybe this is the healthiest I have been in a long long time.  Maybe this is just what I needed.

I am not limiting myself any more.  Times when I want to quit something I loudly say to myself...and not in my head but actually out loud "Hoban stop mother fucking limiting your self.  You can do it!!!  TBI does not define you, it is just a part of you"

There are some things that I do want to be angry about, but I don't let it bother me any more.  Loss of friends...over that...moving on.   Loss of job, still hurts, but eh...their loss!!  Problems with my unemployment....Ok, whatever, I am working on it but not gonna let it put me over the edge.  Its not worth being angry....gotta move on and embrace this version of me.  Gotta roll with it.   Loving it!!!

Making new friends and getting my life back step by step.  ROCKS!!!!  

Saturday, February 19, 2011


Wow folks be scared.  Not that I spend a lot of time online either VIA laptop or cell phone I am now flogging this from my cell.  Just found Blogger app for Android.  I was not looking for it!!  Man if I can only get coffee service and Pee myself I would never have to leave my bed.  I am sure to some of you that sounds like heaven.  To me that would be hell on earth.  Or hell on bed. 

50 First Dates

Someone posted something on facebook the other day about 50 first dates.  And then i posted the song Forgetful Lucy or something like that.  And today I decided to watch the movie.

I used to love the movie.  Used to laugh hysterically and kind of feel sorry for the character Lucy (FYI, character is one of the words I cannot spell any more since my scramble)  So I watched it today...I laughed at some parts and then suddenly at one part in the movie I lost it.  SOBBED HYSTERICALLY.  That never happened before during this movie.  But I just started to cry.  WOW, I was kind of expecting to maybe tear up a bit, but I was not expecting the full onslaught.  It was intense.  Part of it was a pity party and part of it was an ass kicking that I should stop bitching about my life, that it could be worse.  That I should be happy for what I do have.  But honest  to god, it was an emotional roller coaster watching it.  At one point I almost turned it off, but I kept it on, because I am Wonder Woman after all and I needed to be able to watch the whole thing.

Sometimes people ask me why I post so much stuff on here.  Why I don't keep some stuff to myself, and the simple answer is.  BECAUSE.  yeah, that is the 9 years old answer. I just do it because I don't care.  I have no shame, I share it all.  And lots of times it is because I spend so much time alone, this is my way of "talking"

And I do it this way so that I remember too. These are things I need to remember.  I might remember a movie made me cry, but I might not be able to remember which one.

One thing i did today which was cool and I was proud of myself.  I walked Frick Park and then Schenley Park.  I drove with no plans really.  I drove kind of in a stupor.  Well, maybe that is not a good choice of word, but I drove at one point without a plan.  And I was getting all turned around and confused, but I got myself to my destinations. At one point I was yelling at myself in the car saying "Don't Limit yourself because your brain is scrambled Hoban...don't mother effing do it!!!!!!"

So props to me for that!

Thursday, February 17, 2011

2 posts in one day!!! If I was Gabby GIffords my shit would be on CNN

Bitter...who me????  Nope, never!!!   Yeah I harp on the Giffords stuff now, it is just a kick in the ass daily.  And it does make me angry.  I mean I am glad she is doing as well as she can.  Down the line a lil more she will go through some more battles but she will get the care she mother friggin needs because of who she is.

I truly believe that if I was never terminated from my job, I would not be where I am today.  I would have been able to adapt to the new me and continue thriving on my work.  I should let it go, but I can't.  I get so so so angry about it.  Now I am trying to find out ways to get some cognitive rehab so I can be a "normal" functioning human being and get a job.  But because I am not still in the mother friggin hospital I cant get a social worker from the hospital that knows the world of TBI.

So I am trying to go through another agency to get a case manager so I can get some help figuring out things.  Like SSDI, Medicare, rehab, support groups, etc.  But this other agency was asking me questions about TBI waivers and Brain Programs.   Ummmmm.....I need the Case manager because I am not sure of this stuff nor how to do it.  SHIT!!!

Guess I really need to just put on my big girl panties, suck it up and start applying for jobs for real.  Sure, I cant answer how I am doing when that is asked of me, but I am sure I could do an interview with no problems.   I can play being "normal"  I can try to watch the innapropriate things that come out of my mouth on the regular, I can control my anger, I can control when I want to randomly burst into tears.  I can stay wide awake for a full work day of learning new things.  I can stay on track and focus, and not ask 101010000 questions.  Don't mind me and my obsessive note taking and sorry if I dont remember that we met just 2 hours ago.  

Yeah my high functioning ass has got this all under control.

new docs, new ramblings....

Sitting on the porch suckin up the sun and having wind blow through my scarred up head is kinda cool.  Listening to the kids at recess is nice,but hurts at the same time.  Damn living next door to where I worked.  UGH......  I am so diggin this weather.  I hope it stays.

Yesterday saw a new doc.  Saw it for all my mouth/jaw issues.  Maxillofacial surgeon.  So far no surgery needed, just jaw exercises.  But I will be honest, I kinda got snippy, with him.  He just couldnt believe that I am TBI.  At least he didnt say the H Word.  High Functioning, but he was kind of blown away by me.  I finally lifted up the one part of my hair so he could see the shaved part under neath and the scars and then I also said  I AM NOT GABBY GIFFORDS but I am TBI!  Pretty sure I said it loudly.  Think I kind of scared him for a minute.

I have been getting a bit better with my driving and my confidence with that, so I am proud of myself.  But yesterday was kinda hard.  First nice day meant a few motorcycles and crotch rockets out.  It is not the first time I have seen them since my Genius idea to get on one and smash my brain something fierce, but yesterday it kind of bothered me.  It was a weird feeling.  Guess the PTSD is finally kicking in in that aspect.  I was just getting angry,scared, worried, every time I saw one.  What if they crashed, what if they hit me?  What if I hit them??  OMG it was nuts.  But I will get over it, because that is what I do, I get over everything.  What kind of Wonder Woman is scared of motorcycles??  

Sunday, February 6, 2011

High Functioning

Thank god I am a fighter.  I am so so so frustrated but I refuse to give up.  Trust me there are days I want to, want to just thrown in towel and say Eff It.  But I won't.

I went to what I thought was an eval for Cognitive Rehab the other day.  It was just a meeting.  To tell me places I might be able to go to and to try to find out about waivers, etc.

Ummm...I swear to god I need a case manager because I need the cog rehab because I cant do shit like this on my own.  Afraid I will make wrong choices and I just get overwhelemed and confused about shit like this.  But whatever!! I will put on my big girl panties and try to figure this all out on my own.  As usual....and this battle is a friggin hard one to do on my own, but I am used to it, but that doesn't mean I am any less angry or bitter.  I do have some help, but we all know I feel like a burden/pain in the ass since my injury.  But I really do appreciate the help.   I just don't know what direction I am supposed to go in.  And I feel frantic, like this all has to be done NOW NOW NOW!!!!

And speaking of angry.  I really think the titanium plate has helped with my anger just a little bit.  I am not off the hooked pissed like I was when I had the skull piece taken out.  Yeah I am still angry, but not to the level I was.

There was more I wanted to write, but because I did not type fast enough, I forgot.  LOL.  Damn scramble brain.

Oh, one more thing I do remember that I waned to say is I hate hate hate the H word.  Meaning High Functioning.  The doctor I just went to, the physiatrist (same guy I had in rehab hospital) said something about me being high functioning and pretty sure I stopped listening to him after he said that.  I seem to be getting screwed left and right in the brain injury world because I am high functioning.  Yes, I know I am LUCKY.....i know i am high functioning, I know I am not vegetative,but for the love of god I STILL NEED HELP!!!!!!!!!  Every time I hear the words High Functioning I get so pissed.  And sometimes, just sometimes I wish I was worse off.  (not really,but I think that out of all of the frustrations!!!!!)

Wednesday, February 2, 2011

TBI 1- Life 5...I am gonna win this

This is right from my facebook, but this is for those of you that are not part of my Facebook world.  I know there are others out there that follow this.  For the rest of you, sorry for the repeat.

Today had my follow up with neurosurgeon and CAT scan.  So far so good.  Seems like I am heading in the right direction.  He said that CT looked good.

I now have to go see a oral/maxillofacial surgeon.  Hopefully just for some exercises or ways to deal and no no no surgery!  Since my last surgery my jaw line has been hurting, on both sides.  A dull pain and then when i try to open my mouth wide it hurts a bit and there is a TEENY TINY bit of swelling on the right side where I have been cut open many many times.  Neuro wants me to go see this kind of doc.  Ok, no big thing, yet another doctor to add to my collection.  Some people collect stamps, some collect Beenie Babies.  I collect doctors.
  But do not tell me I thrive on this crap!!  I do not.  My laughter and humor and "embracing" it is my way of dealing with all of this.  But it's not like I want more doctor appointments!  

  In October of 09 I made a bad decision.  I got on a motorcycle as a passenger and you know what they say about hindsight.  And this is how I now have the life I have.  TBI is not something that just goes away.  And with multiple skull surgeries there are bound to be some side effects not related directly to the brain and how I function as a TBI human.

  I even hate that I label myself. But I am TBI, I am a survivor, I am what I am.  I may not thrive on this, but I do dwell on it.  Because I am still learning me and learning to "get over it" and just accept shit.  

  I know I joke, but I really think UPMC should just give me my own wing.  Honestly, they really should.  I have earned it and put lots of doctors kids through college all by myself.  

  So now I gather more docs.  This maxillofacial surgeon, and then I am also trying to get some Cognitive Therapy.  I have a doc for that too.  I am getting an evaluation and hope I qualify.  If not, I guess I gotta put on my super big girl panties and hope I can cope and try to get a job without looking like a complete fool.  Cognitive therapy is not like talking therapy.  It is not for depression or anger, it is for me to figure out ways to make choices, to answer questions without my head feeling like it is going to pop off, ways to not feel overwhelmed by life, ways to filter noise, ways to concentrate and ways to just deal with me.

   This TBI over the past 15 months has repeatedly tried to knock me down.  It keeps trying, it is putting up a good fight, but I am fighting harder.  Sure I may cry and be a hot mess somedays, but I am still fighting!!  We all have our down moments in life, mine just seem 10 fold sometimes and I make mine public to you all.  Maybe making it public has a bit to do with my dis-inhibition!  

Wednesday, January 26, 2011

Giffords and my TBI

Some of you have said something or asked me about the Giffords thing.  Here is some of my thoughts/input and just general rambling.

Watching the whole Giffords things is easy and hard at the same time.  It definitely has effected me.  Is this the right "effect" to use?  Damn crazy english language!  :)
But honestly, it is weird.  I feel like I am getting to see/hear kind of what I was like.  Sure I dont remember my beginnings thanks to a coma and general brain scramble confusion so it is weird to see what is going on with her. It is kind of like seeing my own beginning!  The one thing that sticks with me and I have posted on FB is the whole pic when she is in her bed outside of the hospital.  The feeling of being outside when I can actually remember it was awesome!  I hope she can remember the feeling if not the exact moment.
It is also kind of hard watching it and I sometimes get angry and sad at the same time about the whole thing.  Angry because sometimes the news feels like they are giving her 100% chance of hopefulness that all will be good and she will be "normal"  and then it feels like there is no hope for her at all.  I get frustrated because I have lived it, I do live it and I know the reality!!
She will not be the same.  Yeah, we don't have the same TBI, TBI is not the same for any of us, but there is hope for her to live a good life.  Just have to be patient and not a patient!
I cant even really put into proper words the feelings I get watching and hearing about her.  But it is bittersweet.  Part of me hopes that now that it is happened to someone in government and not "just" a Vet, NHL, or NFL player that bigger better things will be in place for those us that survive this.  That it will make it more real and more important.
Maybe it will  bring into light that those of us that have it are important and we are people.  That we are not "normal".  That we do  have problems even though they cannot be seen.  That maybe I won't feel like I have to wear a bandaid on my forehead to remind people that hey, I do have something up with me.  That some of the new parts of me are ok and y'all are just gonna have to deal with it like I do.
And seeing all of this makes me almost OCD about my TBI.  I am becoming more and more obesessed about it and telling people about it and just trying to be the best new version of me.
I hope that I do not need any more surgeries.  After each surgery I notice more differences in me.  But I do still rock!!!  I do like some of the differences and some of them just frustrate me.  But I am slowly accepting that I will never be the full old me and I have to learn more so that I can be a productive member of society again.

    Peace out!

Wednesday, January 19, 2011

Music rocks

Not really, just trying to get you all to pay attention.  :)

My phone I got since my accident broke and I  had to get another one and learn yet another new phone.  OMG makes my head asplode!!!  I hate when smart phones beat me in smart tests.  I thought I was supposed to be SMRT.  lol.  But the Droid is totally worth it for the fact that it is also an MP3 player.  I really can't explain what music does to me since my scramble but it makes me feel better and helps me concentrate a bit and I bop around with some energy instead of being like Eeyore.   And it is also nice to use it to block out the world.  Sometimes I just need to escape and get away from it all so I go to my pretend music world.

Maybe once I get back to my life in the Burgh I might be a bit different.  There is just a lot of stress going on in my life at home with parents.  So sometimes I just need to escape for my sanity.  It is hard to still try to learn this version of me and have added stressors of others I LOVE being sick.  I am just glad that I am medicated for some things or I would be off the hook insane right now with anxiety, anger, and grief.  But I am being a rock for those that need me to be one.  I am WW after all.

I can remember words to songs.  My whole world needs to be a musical.  Now that would be awesome.  And everyone has to know the same dance routines and bust out in dance with  me.  My pretend world is friggin awesome!!!!!

And since I am in ramble mode...hello not being able to have a linear conversation...but I digress AGAIN!...fml.  So with this music thing.  I can sit and listen to music and stare at a wall and be content.  Or have the music going and do 120000 other things like clean, do nails, etc...anything.  But I cannot sit and watch tv.  No concentration for that.  Crazy.

My Pittsburgh peeps that I see on the regular, Mike, Marieke, Rich, Shannon, Will, HOLDEN, can't wait to see y'all again.  Yeah I will put you all out there....Be glad you are not on my other list.  LOL.

    Peace out

Monday, January 3, 2011

my own psychotherapy. glad I was in the MH field. ANGRY LETTER

To whom it may concern.  APW (will not use full name though I would love to put you on BLAST!!!!!!!)

Fuck you!  You have been able to continue to live your life and yet mine has been put on pause.  Or maybe screeched to a halt.  I have no memory of how this happened.

You got to graduate from law school.  You got to continue to see your friends, have a social life, maybe get a girlfriend, be independent, continue living.

I have had months of rehab.  Speech Therapy, Cognitive therapy, Occupational Therapy, Physical Therapy.  I have had 4 brain surgeries.  Surgery is my new normal.  How awesome is that????  Surgery doesn’t phase me.  I have no fear of it.  I am the social butterfly with the docs and nurses in pre-op.  I am the one laughing.  I have the pre-op procedures memorized.  I am pretty sure I can perform my own surgeries if it wasn’t for the damn anesthesia.

Post op doesn’t bother me any more.  I have all of the neuro tests memorized so I am pretty sure I am not giving them the results they want.  I answer their questions before they begin.  Yes I know Obama is president, I can give you the month and year but don’t ask me the date or what day of the week it is.  I know I am in Presby hospital, or Mercy hospital, or Montifore hospital.  It’s a choose your own hospital adventure.  I can touch my nose with my fingers and my eyes closed though it may take me a second to orient myself.

I know what it is like to feel off balanced without being drunk.  It is my daily feeling.  To walk with an unintentional swagger.  It’s not a cool swagger.

I know what it is like to have a perpetual eye twitch.  To have a sore shoulder from it being broken and a perpetually cracking wrist from that being broken. What, did you scrape a knee or something while I got the crap beat outta me and my brain scrambled?  Hope you got a nice band aid!

I can go on and on and on with my anger towards you.  When this first happened I was not that angry with you.  I accepted we both fucked up I guess.  My one neuropsychologist was angry with me for not being angry at you.  He would be proud of me now.  The ball of anger that lives in me is frigging pathetic.  I want the old me back!!  Yet I don’t know if I can get her back.  I try, but it seems like a lost battle.  So, again. APW, fuck you!!!!!  May your day come.  Can’t wait for March and I hope to god you get what is coming!!!

I an go on and on with how  my life has changed, how I have changed (the ways I at least recognize) but I would like to wait until the day I see you.  So you can hear the pathetic sadness and hear the full blown rage.  BRING IT and Fuck you one more time.