Where is my semi-charmed kind of life?

Where is my semi-charmed kind of life?: Dear boy that broke me

2012-02-09T16:48:00.001-08:00

Where is my semi-charmed kind of life?: Dear boy that broke me: Instead of a Dear John letter, here is a Dear Austin letter. Dear Austin, 2 Years and 5 months ago, you broke me. We may have both made t...

Dear boy that broke me

2012-02-09T16:48:00.000-08:00

Instead of a Dear John letter, here is a Dear Austin letter.

Dear Austin, 2 Years and 5 months ago, you broke me. We may have both made the most stupid mistake of our lives. Well at least mine, since my life basically stopped and yours kept going. You may have a hit a few rough spots, but trust me. YOU GOT OFF WAY EASY!!!!!!!

While you keep trucking in your world of being a lawyer I had to stop what I loved and now I have to find a new love. Do you have any idea how hard it is for someone with a brain injury to do new things? Sure, I know I seem to do really well with everything. But no one really knows how much every thing is a struggle for me. Driving is a struggle, making decisions is a struggle, retaining information is a struggle. I get lost in conversations quite frequently. It sucks. I used to always be self conscious of it, but now I am like fuck it! Fuck it all. And since I am saying Fuck it....I am now going to start going back to school.

Austin do you have any idea how scary it is for me to go back to school? I will be doing school full time and working full time. My brain scrambled self will have about 15 hour days. That is hard for any "normal" person, but it is doubly hard for me. I am so damn scared, but I have to do it because you broke me. I will be in school from 10-2 and then working from 3-11/11:30. And my days will be longer because i will be taking the bus. I have to take the bus because driving downtown makes my head explode and fills me with anxiety and confusion to the extreme. It is not safe for me to be driving. And then when school starts it really won't be safe for me, because the exhaustion will be dangerous. And then I will have the tbi hangover feeling. I finally had that for the first time last week. I felt like I had a night out of partying, drinking and smoking and being a fool until 5 a.m. But all I did was drive down town, figure my way around town, walked around trying to find where I was supposed to be. Received information about school, and talked to an admission representative. Just that put me over the edge. I felt like shit the next day. So thank you for that.

You may have taken away my friends, my social life, my work life, my life that I knew from 1979 until 2009. So I guess me going back to school is the last piece of me trying to find my new life. I have given up on social life, I have given up on getting friends, I have given up on actually being happy and not just putting on a front. Now I have to to try to find yet a new version of myself, but this time without mother fucking brain surgery. Finding my new self on my own terms now.

So I am scared out of my mind. I am full of anxiety, apprehension, and self doubt. Is this the right choice for me, or am I just being impulsive as usual? I'll never know unless I try. I hope this is not a mistake because if so, this is a $19,000 mistake.

Where is my semi-charmed kind of life?: I'm a big kid now...sort of

2012-01-02T21:49:00.001-08:00

Where is my semi-charmed kind of life?: I'm a big kid now...sort of: Today, I Kara E Hoban rode a public bus (not a short one smart asses :) ) for the first time by myself. I never have done this before. In ...

I'm a big kid now...sort of

2012-01-02T21:49:00.000-08:00

Today, I Kara E Hoban rode a public bus (not a short one smart asses :) ) for the first time by myself. I never have done this before. In college I always rode a bus now and then with friends. I never had to rely on the system. Never cared to. Confused the hell out of me in my before life and I thought my head would explode with this version of me.

A few months ago I had to have one friend ride with me on the bus just to show me how it works. Where to wait for the bus, how to let the bus know I want to get on it. When to pay, how to pay. What times the busses come. The whole thing was all so confusing to me. I had one friend ride with me and 2 other friends explained the schedules to me. This was a big anxiety trigger for me. Having to do new things, the great unknown, things that any normal person would handle just fine, kind of rock my world. It is more a fear of looking stupid and getting too confused and getting lost. I don't like being "stupid" or looking too confused in normal every day situations. It is one of my deficits since my brain rearrangement. I HATE looking like I have no idea what I am doing. I think people are going to judge me. I know logically people won't give a shit, no one will notice, etc, but I can't help it.

So my anxiety of winter and now having a job I can't walk to in the winter I had to learn the bus system or quit my job in the winter. My anxiety/terror/phobia of winter has trumped my fear of the bus system. So today I heard we were going to get some snow...it was not that bad, but I decided to do the bus instead of driving, in case the snow got worse when I was at work. Work did not need to see me have an epic meltdown, full blown panic/anxiety attack, so I did the bus.

I took the bus to and from work. A girl could get used to that. Being able to chill while a strange person driving a huge vehicle filled with strange people was sort of relaxing. It was relaxing because I did not have to use too much brain power for driving. I got off the bus too early, which was fine because I could take a slow walk to work which was nice and calming. I got off of the bus too late at home, but that was ok too. It was all ok except for the fact that I walk like a jack ass in the snow. I am so fearful of falling I walk so stiffly and so tense, and I kind of shuffle/ tip toe/ tilt. Ir hurts my back and my dislocated pelvis and leg even more. But I can only conquer one fear at a time folks. See, these are all some of the reasons I am terrified of winter. It all boils down to me petrified of getting hurt again. I don't want to fall, I don't want to crash, I don't want to be on a bus that someone shoots at. It's all fear fear fear.

Taking the bus was good. The snow was not that bad today, but at least I proved to myself I can do the bus. This is big for a girl with trust issues, fear of being hurt, fear of winter. Trusting a stranger driving me around in the snow is big for me considering I need xanax to be with my dad when he drives me in the snow. And I TRUST HIM...I know him, and here I am trusting myself to s complete stranger. How I will be when the winter gets worse, time can only tell. But for now, I am patting myself on the back for this accomplishment.

goodbye 2011 hello 2012

2011-12-31T08:31:00.000-08:00

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?

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

2011-11-30T17:22:00.000-08:00

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

2011-11-30T17:17:00.000-08:00

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.

Thanks

2011-11-23T18:25:00.000-08:00

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.

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

2011-10-13T11:14:00.000-07:00

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:
Neurosurgeon
Physiatrist (rehab doctor)
Primary Care
5 Physical Therapists
3 Occupational Therapists
2 Speech Therapists
Maxiofacial
Therapist
Psychiatrist
2 Neuropsychologists
Gastrointestinal
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?

Reflections of 2 years

2011-10-03T07:44:00.000-07:00

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!

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

2011-09-06T15:21:00.000-07:00

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

what a difference time makes.

2011-08-26T22:49:00.000-07:00

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. YIKES...it 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.

Progress!!!!

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!!

driving long distances with my tbi

2011-08-21T09:18:00.000-07:00

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 behind....cars cars cars, is it safe to go is there enough space....Eh, I guess its ok now...car behind me honks. Shit, I guess I should go.

Speed limit sign check, check my speed...is 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.

Rocking this thing called a job!

2011-08-12T14:15:00.000-07:00

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!

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

2011-07-06T19:06:00.000-07:00

HA!!

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.
Seriously.
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!

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

2011-06-30T18:49:00.000-07:00

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'

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

2011-05-17T11:06:00.000-07:00

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!

Life- Full Force

2011-05-01T08:03:00.000-07:00

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.

The little things

2011-04-09T09:40:00.000-07:00

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.

The more things change, the more they stay the same

2011-03-27T20:58:00.000-07:00

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 Stripper...lol) 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.

positively positive

2011-03-08T06:48:00.000-08:00

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!!!!

Really???

2011-02-19T19:25:00.001-08:00

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

2011-02-19T17:46:00.000-08:00

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!

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

2011-02-17T19:32:00.000-08:00

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....

2011-02-17T10:09:00.000-08:00

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??

High Functioning

2011-02-06T12:00:00.000-08:00

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!!!!!)

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

2011-02-02T13:28:00.000-08:00

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!

Giffords and my TBI

2011-01-26T09:23:00.000-08:00

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!

2011-01-19T07:27:00.001-08:00

Music rocks

2011-01-19T07:26:00.000-08:00

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

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

2011-01-03T11:17:00.000-08:00

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.

Happy New Year, please

2010-12-31T12:09:00.000-08:00

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

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

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

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

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

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

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

Christmas and my new brain yet again

2010-12-26T12:59:00.000-08:00

MERRY CHRISTMAS.
  Christmas was good, but i noticed some new things about me yet again. These are new things that I am noticing at least since the titanium plate was placed on Dec. 8th.

   Crowds and sounds and such have been a point of mine I do need to work on. But this Christmas eve I was getting my "sweaty palm disease" Yes, I self diagnosed myself with something. HA!! I have had enough surgeries I think I qualify as doctor now. :)

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

   That was for about the first 3 hours. And then as my body acclimated and I calmed myself I was better and able to handle the night better. I just get so annoyed I have to change myself for situations. I just want to be "normal" again. I know that is not going to happen, I know that but that does not mean I still don't get frustrated!

   Now I am gonna go get my new Black Eyed Peas cd and bounce around and shake my groove thang!!! LOL. Makes me happy, I love me some Pop, R&B, Rap now. LOVE IT!!!! Puts me in a good place. If you get a chance read Speed of Dark by Elizabeth Moon fiction/sci fi about an autistic man (high functioning) that listens to music at work, he is allowed. I get it!! I need that if I get a job. Just to be able to function.

   Well, thats my rambling for today!!
   :)

Things gained and lost since TBI

2010-12-21T20:43:00.000-08:00

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

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

Lost job
Lost friends
Lost self confidence
Lost Life

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

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

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

Lost ability to be able to answer a question.

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

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

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

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

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

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

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

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

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

Hopefully someday I will think of more things gained!!

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

2010-12-17T12:15:00.000-08:00

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

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

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

    You have seen my temper tantrums, have heard me verbally beat the shit outta myself, yet you stay here to help me and to make me feel better about myself.

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

   This message is not for those of you that do not live near me. So Meghan, Jason, Burke, Gina, cousins, you are all in the clear. :)

2010-12-17T08:43:00.000-08:00

seriously, i dont know what to do with this version of me. karaoops 4.0 I guess.

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

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

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

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

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

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

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

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

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

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

Brain surgery number 4

2010-12-11T07:27:00.000-08:00

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

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

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

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

I am a sexy cyborg gangsta.

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

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

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

2010-12-04T19:59:00.000-08:00

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

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

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

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

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

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

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

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

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

My world...funny and angry. lol

2010-11-30T12:23:00.000-08:00

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.

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

2010-11-26T11:42:00.000-08:00

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.
　

not apologizing, but I kind of am.

2010-11-23T06:13:00.000-08:00

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!!!! :)

not always bitter and angry

2010-11-16T20:39:00.000-08:00

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.

understanding needed

2010-11-14T14:09:00.000-08:00

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!!!

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

2010-11-12T15:15:00.000-08:00

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???

brain scramble list.

2010-11-01T20:13:00.000-07:00

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

Attention - Huh, what now oooooh......look there is something over....wait what was I supposed to be doing, oooh dishes need washed let me text someone and get on facebook and look at the leaves blowing OMG its my favorite song on the radio.
Concentration
Distractibility
Memory
Speed of Processing - Hello slow like an old computer.
Confusion
Perseveration - yeah I perseverate. Obsess over things, think about it until I do it accomplish it, or talk about it. So glad I know the mental health lingo too so I diagnose myself.
Impulsiveness - I am leaving this blank. I am not Impulsive at all. I dont impulse shop, impulse meet people, impulse drive, impulse text etc.
Language Processing
"Executive functions"

Speech and Language

not understanding the spoken word (receptive aphasia) I understand the words though sometimes I get confused by the point that is trying to be made.
difficulty speaking and being understood (expressive aphasia)
slurred speech
speaking very fast or very slow
problems reading
problems writing

Sensory

difficulties with interpretation of touch, temperature, movement, limb position and fine discrimination. Hello no tolerance for heat and cold

Perceptual

the integration or patterning of sensory impressions into psychologically meaningful data

Vision

partial or total loss of vision - Goodbye upper peripheral vision it was nice knowing you for 30 years
weakness of eye muscles and double vision (diplopia)
blurred vision
problems judging distance Have a bitch of a time parking now for sure or maneuvering shopping carts telling how close or far I am from people
involuntary eye movements (nystagmus) EYE TWITCH!!
intolerance of light (photophobia)

Hearing

decrease or loss of hearing- like being born deaf in one ear wasnt a bitch enough and now I have been going to the ear docs for my hearing ear cuz the hearing is worse now. AWESOME
ringing in the ears (tinnitus) YUP
increased sensitivity to sounds

Smell

loss or diminished sense of smell (anosmia) - nothing smells the same. I miss the smell of men cologne. I am afraid to eat yogurt or drink milk sometimes because i cant tell if it is good or bad

Taste

loss or diminished sense of taste - things dont taste the same for sure. Most times things taste super salty. Chocolate and candy and whatnot doesnt even taste the same. Neither does coffee. :(

Seizures

the convulsions associated with epilepsy that can be several types and can involve disruption in consciousness, sensory perception, or motor movements

Physical Changes

Physical paralysis/spasticity
Chronic pain
Control of bowel and bladder
Sleep disorders _ yup, havent really slept since October 6 2009
Loss of stamina Napping is a new hobby. I try to do some thing I try I try and sometimes I just fade away
Appetite changes
Regulation of body temperature _ yeah my base temp is not 98.6 any more. LOWER. and I cant tolerate heat or cold now.
Menstrual difficulties

Social-Emotional

Dependent behaviors - luckily not on drugs or alcohol (yet) I say yet because it could happen but I hope it does not. But I am dependent on people and social interaction though alot of times i dont want to be around LOTS of people.
Emotional ability
Lack of motivation - Hellz yeah. I need to motivate myself to start working out again and to clean and to try to go to grocery store
Irritability - YES most times I am irritated with myself and my new "faults"
Aggression - verbally for sure and i am at the point where I dont care really who I piss off
Depression- YES since my life is change without my consent.
Disinhibition- YES YES YES, LOL, that is all I am going to say on this one.
Denial/lack of awareness- Oh I am hyper aware,normally of my faults and minor deficits. I have got to stop beating myself up

Those of you that know me can pick out what I have now. Yes again, I know I am lucky to not have them all. But life still stinks since the scramble. Yeah I am alive, but I still don't concur with my day to day life.

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

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

blah blah blah

2010-10-29T18:49:00.000-07:00

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

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

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

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

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

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

Enough rambling until we meet again...
WW

This thing called life

2010-10-16T09:43:00.000-07:00

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

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

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

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

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

Happy New Year!....please

2010-10-08T20:30:00.000-07:00

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

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

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

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

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

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

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

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

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

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

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

almost one year......surreal

2010-10-03T08:01:00.000-07:00

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

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

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

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

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

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

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

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

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

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

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

2010-09-29T06:57:00.000-07:00

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

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

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

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

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

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

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

pieces of me

2010-09-23T20:10:00.000-07:00

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

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

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

What Brain Injury Survivors Want You to Know

Complied by: The ‘Amazing’ Brain Injury Survivor Support Group of Framingham, MA

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

just me...raw

2010-09-20T08:25:00.000-07:00

Bits of my life.

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

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

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

I am a bottomless pit of needs and wants.

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

Baby's big day out!

2010-09-17T10:59:00.000-07:00

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

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

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

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

Meaningful relationship with my walls

2010-09-15T06:22:00.000-07:00

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

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

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

Yakkity Yak

2010-09-13T19:54:00.000-07:00

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

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

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

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

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

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

it's a doozy. Parts of my life since April

2010-09-10T19:37:00.000-07:00

Pieces of my life. These are snippets of entries I put on a support group site. You can see some ups and downs. As you call can tell, I have no shame about sharing my life with you all. Maybe you can understand me some more. Do not judge my grammar and spelling. These are all just snippets I am sharing with you from honest to god entries I put on a TBI support group site. None of you ever see this side of me at all....so welcome to a big part of my world. And this is by no means all of it. I will save you some of the suffering of having to read it all. Actually I am just covering my ass, there are some things you all are not allowed to know about me. :) I have second guessed myself if I should post this, but hell. Since the scramble I have been mostly balls to the wall alot! So here goes nothing.............

April(6 months post accident)

I never really did doctors before my TBI and now I see all sorts monthly I am sure most of us feel this way, but I cannot bloody wait to be "normal" again. Well as "normal" as I can be.

I love my neurosurgeon!!! yeah he is easy on the eyes, LOL, but I love how real he treats me. Like a human being and not just a patient. Also love that he calls me super star!! That boosts the ego for sure. And that is needed some days.

perpetual eye twitch is ok since all the nerves are still trying to heal. After all I did have to have 2 different kinds of brain surgeries so of course there is some damage. I have been very patient so far, but I sometimes I catch myself. I am like "It has been 6 months I should be all ok now!!" I know that is silly, but sometimes I have hope that I should be all "normal" by now.

Thursday I have to have an EMG to check for possible nerve damage. I get wicked tingles in my right leg and some numbness. My neurosurgeon reassured me that if I need another surgery he can do it. UGH...the things I do to see a good looking man. LOL. In all honesty, yeah I joke about my situation just to help myself. I gotta joke.

Sometimes I am just overwhelmed and feel like I need to doi too much. I try to be like my old self. I have to stop doing that. I need to learn the new me and love the new me. I just get so frustrated with my downfalls.

And this dis-inhibition, while amusing to some, is going to get me in trouble some day. I laugh about it, but oof! WOW! Thankfully I do have some smarts about myself and what I am doing

Does anyone know where my life went?? I miss it!

I get more and more frustrated with the new me.

I am so sick of being angry, sad, and overwhelmed. I do what I have to do on a daily basis, but it is getting harder and harder to pretend.

I am only 6 month post TBI. And most people don't understand TBI. Yeah, I am mostly normal, but I do have deficits! I wish people would understand!!!! Maybe I should just wear a bandaid on my forhead so that people remember that I did have my brain scrambled and reassembled.

May (7 months post)

Work work work, it feels like that is my life. Well, for the most part it is. I know I am lucky I can work, I just miss my social life! I used to be able to balance it all, and I used to be able to see my friends more. Now that I am too freaked to drive at night, I don't really have a social life. I feel like I am 14 waiting for mom and dad to drive me somewhere instead of a 31 year old! Hell, if I lived with mom and dad it would probably be a bit easier for transportation.

Patience patience patience, I know. I need to embrace that I will not be the same as the old me, but that doesn't mean I can't be pissed about it.

One bright bit, I went to K-Mart today by myself without any anxiety or feeling of being overwhelmed. Though, I do know this Kmart from before TBI and I was kind of able to visualize a path to get to exactly what I needed. Got a little bit of nervous sweaty palms and a bit of sound overstimualtion, but I was able to do it!

I am getting called out a lot on my mood because it apparently is written all over my face. One of the kids I work with says "miss kara, you are angry today, you have angry face." or today i was smiling because it was a bit of a stress free day and the same kid says to me "miss kara, you are smiling so much today, is your half of your brain that was broken healing better?" This crushes me that he can read me like this. I try to explain to him that I am not angry with him, and sometimes he gets it and sometimes he doesn't. I even have one co-worker that comes up to me and whispers in my ear that I need to be nice. He can see it on my face when I am upset and getting ticked off. This all goes with the feeling of being WAAAAAY OVERWHELMED with work and frustration with my "new" self and my deficits. Some of my co workers who knew me before the TBI don't get me now. I explain that I am a bit different and I appologize all of the time for looking angry, but I can't help it. My face seems to be solidly in the angry/frustrated/sad place.

I try to change the look on my face sometimes, but that takes so much energy. Of which I need for work and life in general. I miss the old me.

I never went to doctors before this. And now I feel like I practically live at different doctor offices. Some of them, I am like Norm walking into the bar on Cheers. I walk in and the receptionists are like "KARA!!! how are you????"

June (8 months post)

Yesterday and today! I drove myself and went to K-Mart, the grocery store, Old Navy, and Ulta.

WITH NO ANXIETY!!! The grocery store did not rock my world like it normally does. I split a big trip into 2 days. So yeah, 2 days of the grocery store but making the trips smaller seemed to have helped.

And today I was able to walk/run a mile in under 25 minutes. It is not amazing time, but for me that is great!! I am slowly getting back to my old strength! I would do a happy dance but I think I wore myself out!!

So i was discharged my one doctor, to only gain another possibly 2. I finally switched PCP's to keep my medical records within one hospital system. Basically for my sanity so I don't have to explain everything to new doctors and to make sure there are no mistakes along the way. So I went to my new pcp and had my ear checked out. My left ear has been driving me nuts since the accident. I feel and hear clicking all the time. It feels squishy. My ear was always blocking and popping big time after the accident and the surgeries. It was checked once and everything was Ok. Finally I just could not take it any more and had my new doctor look at it. There is major fluid backup in the ear drum and ear canal. it is bubbling. YUCK!!! That explains the squishy feeling.

The thing that really stinks is that I was born deaf in my right ear. So I only have my left ear to hear out of. The feeling of squishy and clogging has impeded my hearing. And I might have to go to an ENT to get it all checked out too if the meds my doc put me on don't help.

Yet another fun part of TBI, brain surgeries.

I spend so much time and money at doctors, money for parking, and money for meds it is ridiculous. So frustrating. Another part of being 31 going on 99.

July (9 months post)

Yesterday after hours and hours of sitting home alone a friend finally returned one of my calls to come over. That was around 4:00. I was all by myself from about 4:00 friday until then. I do not like alone time at all!!! I am more needy now for companionship, I have told people that, but I still always feel alone and spend lots of alone time.

Now, I was able to smile at some point yesterday because I was able to make beaded bracelets, while chatting with my friend and listening to music. This required eye hand cooridination, concentration, multi tasking, good vision. I was so freaking proud of myself for that accomplishment because months ago i would not have been able to do it at all. Or i would have started, gotten frustrated and quit.

I have already cried a few times today. I am just so upset. I always second guess myself now since the TBI...am I suddenly a bad person?? Why do people not hang out with me??? where did everyone go???? I know this feeling is one of the common ones with TBI people and it sucks!! I can't stand it. So here I am sitting in my apartment on my computer

I finally called my PCP office to get my head checked. I did not know who else to go to since i was discharged by one doc from the rehab hopsital and I don't see my neurosurgeon until october, my one year anniversary of the accident.

But our medical system is sooooo cool here. My neuro's office saw that i was having some concerns with my head and called me.

I saw my PCP and they sent me for a CAT scan STAT. They did not want to wait around. Better safe then sorry. They just want to check me out since my skull has been feeling odd. It feels very very tight and very heavy. I called my neuro office to let them know i got a scan and they have me scheduled now for the 22nd.

Not bad work for a TBI to get done all by herself in one day.

It was just REALLY confusing in the one hospital. They re-did some stuff it is under construction and i thought I was lost. I was getting so confused in the building because things were not the way I remembered them. I walked in lots of circles. Embarassing, but I accomplished my goal. I just hate having to do all this stuff on my own. But oh well. I just need to get used to that.

Today had appt with PCP at 8:45 a.m. to go over my problem with my ear from my accident and my head pain/weirdness Said I needed an MRI to double check the nerves.. Water build up in ear drum, bad clicking and hearing going down hill. Then he sent me to ENT doc at 1045. There is scarring in my ear drum along with water build up and possible Eustacian tube deficiancy or something like that. ENT sent me to Audiology to get my hearing tested. Around 12:00. then at 330 had to go to my MRI.

Oh my goodness for all of this for TBI girl. Talk about overwhelming and a bit confusing. Thank god I take my notebook with me everywhere to write everything down. Again the part i hate about this the most is going through all of this alone and worrying about the "what ifs?" I try to stay positive but there is always the part of me that freaks a bit. What if the docs tell me something I don't want to hear or something I can't handle or if there is some complication? I can't handle that on my own. Oh well, it is what it is.

My parents came out to visit me. They came out for their 34th wedding anniversary too. All of a sudden I was doubled over in pain, could hardly talk or breath. Couldnt sit or stand, just kind of wanted to float. Dad called 911 and off I went. Had to have my galbladder removed. Apparently it was really really really infected and swollen. It was a mess. And in the process I guess my liver got nicked a little. So I had to have another procedure. had to have a stent placed on my liver. I am not wonder woman so much any more.

I am having a hard time seperating that this has nothing to do with the accident and getting TBI. It is too close together. I feel like I a failiing at life. And I feel bad for my parents. They are now going to stay with me for 2 weeks. Basically to help me and to help my mental health since they know I am depressed and always lonely and I depend on work for my life. I am not allowed to work for some time either.

August (10 months post)

I am so sick of saying "I am sorry" all of the time for every little thing I do. Sometimes I feel like a disappointment.

www.zazzle.com a website for tshirts, cups, pins, etc. They have a TBI section with some pretty good stuff. I love all of it and want it all.

Some highlights....pins/shirts with a pic of a brain with a band aid on it and it says, I am still me"

I am a TBI survivor.

Not tonight dear I had a craniotomy.

TBI has touched my life....

anyway, just check out the site, the stuff is amazing and i want it all!!

Yes, I am still me, frustrated, annoyed, jobless, galbladderless (lol), and still brain scrambled.

I may have an infection in my skull/brain. Gotta get more MRI's. Thank god I love my neurosurgeon.

And i also have to go to a neuro opthamolgist. (neuro eye doctor) because I am seeing floaters a lot now.

Doctors doctors doctors doctors doctors.

I love me my doctors. Hey, at least it is air conditioned in all the hopsitals where my appts are. So that is one way to beat the heat. See, I can find some silver linings.

MRI and blood work was inconclusive really. Neuro is confused too. So in hope of alleviating some of my funky feeling in my head I am scheduled for a small head surgery on Tuesday.

They are going to cut some of the scalp and clean some area in my skull and then stitch me back up again. This should be just an overnighter. DOne on tuesday and hopefully discharged on Wednesday if all goes well.

If this doesnt help then down the line i will need to have another craniotomy. This is one where they take a piece of the skull out and then eventually put it back in. This time they might have to use titanium or something. Last time i had this done I had my original bone put back in.

So yeah, on Tuesday I have the little head surgery and I also have a procedure scheduled on Thursday to get the stent removed from my liver.

Honest to god, I am just moving into the hospital! Shit!!!

Was in the hospital for 5 days this time. Went in for my litlle surgery which was to be a clean up and they ended up having to do a bit of a craniotomy again. There was in infection in my skull flap that they replaced in December. So they had to cut a piece out that was infected. I do have a hole in my head again, but I dont have to wear a helmet this time. And I am rocking a super cool haircut. (read with LOTS of sarcasm) Looks like I have a boomerang shaved into my head.

I know have a picc line too so I can shoot myself up with antibiotics for a month to hopefully kill this bug that is in me.

My life just feels like a mess. Everyone tells me I am lucky to be alive. Yes, I know that, but I am not living a life, I am just surviving day to day.

My brain injury and surgeries is a HUGE part of my life now and is basically all I want to talk about because is it the only thing going on in my life. And it helps me deal with it all.

I keep saying I am not "normal enough" for the "normal" world, and yet I dont really fit in the tbi world. I feel lost sometimes.

Even my home nurse, (who helps with my IV meds I need for now) says You are a mess on paper, I didnt know what I was getting into. I cant believe how amazing you are" I know she is saying that to be nice and supportive. I know I am amazing for where I am, but statements like that dont help me. Makes me want to cry sometimes. That just goes with feeling lost

I know this is just another ripple in my life. I know I can get over this all and I am just feeling kind of sorry for myself now. "It is what it is" I can overcome this all and kick it in the ass. I just feel like I can ramble on about nothing and everything right now.

And the sad thing is, is that I feel the most comfortable at hospitals. I dont get weird looks for having my funky hair cut and wearing a picc line. I actually dont mind being in the hospital. Hell, I am around people all day and can talk to everyone and feel like I am not complaining about life. And I feel validated.

Had my appt with my neuro today. I got my stitches out!!! YAYAY...did a happy stitches out dance! I wore my Wonder Woman necklace and he loved it! I think my neuro doesnt know what to think of me sometimes.

The Ugh part is that in october I have to have a special CT scan to measure the size of the hole in my skull so that I can be operated on yet again to get a plate put in. The doc said it will be titanium. I am demanding diamond encrusted platinum. He said he will see what he can do for his super star. LOL. But I am just annoyed that I will need yet another surgery.

These woe is me days are hitting me hard lately. It needs to stop. I think my recent hospital stays and the losing of the job have finally hit me and i am just doe with it. I really am. I get so mad at myself for getting on that motorcycle 10 months ago. I effed up and made a mistake and it needs to stop kickin me in the ass.

September (11 months post)

The past month my parents have been staying with me or they have been dragging me back to my hometown to stay with them. Yesterday they have finally set me free, I am flying solo again. Which may or may not be a good thing. Just so lonely. I have been used to being a social person and being around people and now i am not. I look forward to all my doctors appointments or my home care nurse to work on my Picc line to come. It is something to do and someone to talk to.

And living in the community where I worked in the elementary school kind of hurts. Yesterday I was at CVS getting my meds and some kids from the school were there. They were sooo excited to see me. All ran over and hugged me and then asked why I was not in school. I just said that I did not know why I was not there and that I miss them all terribly. And then they started asking the questions about my picc line. They all know that I am Wonder Woman, so I said it was how I get my Wonder Woman super powers. HAH! But after I left there I went home and started to cry because I miss the kids, I miss my job, and as usual, I miss my mother effin life!

Don't always expect funny

2010-09-10T06:55:00.000-07:00

I know that I am known for being pretty funny and sarcastic. I am just going to say right now, don't always expect that from me on this. It will come out sometimes, hell probably most of the time, but I feel it's only fair to give the disclaimer right up front.

I love how I have my degree in English Writing and have done nothing with it. Which is fine since I just randomly picked a major that was "easy" and here I am writing writing writing away and liking it. Maybe I should have scrambled my brain 13 years ago.

It is coming up on the one year anniversary of the "new" me. What a frigging year it has been. Multiple hospital stays, many trips from Western to Eastern PA, physical therapy, occupational therapy, speech therapy, cognitive therapy, neuropsych testing, etc. Blowing away all my therapists and doctors with my skills. Not being able to work and then the thrill of my first day back at work to now. Well, we won't discuss now. I won't discuss now because I am trying to have some class. And lord knows with me, that does not happen often at all. So write this day down in your calendar folks!

With the one year coming up, I am finally in the anger stage of all of this. For the most part I have kept myself together over the year. Yeah I have been annoyed now and then and probably down right pissed, but now I am in full blown pissed off mode. Pissed at myself, pissed at the person I was with, pissed at life in general. Again, I know I am lucky to be alive, I am lucky to be as cognitively aware of things. I know I could have been a vegetable, I could have been paralyzed, I could have died. I know this. But sometimes I wonder, it's just a fleeting thought, if I would be better off if I was a little less self aware of my deficits, of my differences, of the "new" me, my new life. Would I be happier if I did not realize these things? Who knows!

My phone used to ring or beep with texts from people to do stuff with. Wanna go for a ride? Lets go out to lunch? Wanna go for a walk/hike? Lets go get our drink on!!! (one of my favs...yeah go ahead judge me if you want, I don't care). Or texting people til 1 or 2 or3 in the a.m. Now it is mostly mom and dad making sure I am ok, CVS to remind me to get my meds or refill a script, and any of the numerous UPMC offices calling me about appointments. My social life revolves around UPMC. It's to the point where I like going to any of the hospitals my appointments are in.

This is a preview of my life. I swear I will be funny sometimes..the "old" me.

The beginning

2010-09-09T10:09:00.000-07:00

I figured since I have so much free time on my hands I might as well do this. I have been thinking about it for some time and now I am doing. Thinking is overrated. I obviously do not think things through too well. If I did, I would not be where I am today.

Yes, in October I was in a motorcycle accident. You can ask me questions about it, but I do not remember it at all. Hell, I don't even remember being on the bike. Well, I do remember getting on it and then getting off of it. So how I smashed my head is beyond me.

Folks, I have a Traumatic Brain Injury. I have had 3 different brain/skull surgeries in the past 11 months. But I am still alive and kicking and as sarcastic as ever! I am a very high functioning TBI'er. Yes, I know I am lucky to be alive so don't tell me that, but I still don't like my new life. The new life of mine since I scrambled my brain.

There have been many ups and downs since the accident. Some of the ups, which may seem strange, but if you ever had a brain injury or know anyone else with one, these little things can be ups.
  Taking my first stand up shower, not having to use a shower seat!
   Being able to complete reading a book!
  Using the treadmill
  Passing the state evaluation to be able to drive again.
  Finally being able to go to the grocery store without feeling so overwhelmed and freaked out
  Multi-tasking just a little bit
  Getting off of LOTS of meds.

  Yeah these are some of the ups that I remember. (yeah there are more, but sadly with scrambled brain the memory is not the same)

   This is just the beginning of my ramblings. Hope you all will enjoy my ramblings because I have nothing else to do so there may be a lot!