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!