New Brain Doctor

So, in two days I see a new Neurologist.   I have all my records from my old neurologist from Oklahoma.   I have DVDs of all my past MRI's every year since the surgery.  I have all the reports and information on those MRI's.  

For the past 9 years, I have been examined, tested, watched, monitored and every other damn thing.   I have been sent to Pain Management for the pain.  I have tried every goddamn pain pill on the planet that the doctors tried to give me for pain.  I have done every goddamn thing for the pain:  massage, botox, creams, meditation, drugs every thing.  And nothing worked.  NOTHING

So the Oklahoma doctors just patted me on the ass and said to call them if I have new symptoms.   Well fuck.

Now I see a new doctor on the other side of the country....I DO NOT WANT TO DO THIS.  I DO NOT WANT TO START THE MEDICAL MERRY-GO-ROUND OF TESTS AND DRUGS.

No matter I have all my records, they will want their own records, their own tests (which will be exactly the same fuck test I have already done)...I will have to retell them my whole stupid fuck sad story....I don't even remember most of it, not anymore, so telling it will make me sound confused, stupid and ignorant...I KNOW WHAT PAIN PILLS WORK AND WHAT DON'T.  Everything they will have me do or try will be "been there done that"...

I do not want to be a "guinea pig" again.   I don't want the new docs to start testing me again, for their own curiosity...I did not even want to get a new Neurologist.   I have inoperable brain tumors.  Every year I get new ones, nothing can be done to stop this.   so why the FUCK do I need another fuck brain doctor???   Why can't I just live out my life without doctors????

I WAS A MEDICAL "CRASH DUMMY" FOR OKLAHOMA AND NOW I AM ABOUT TO BECOME A MEDICAL " CRASH DUMMY" FOR VIRGINIA.

I don't want MRI's anymore, I don't want to know what is going on in my brain anymore...not knowing is better than knowing....not knowing gives me time, lets me breath and pretend i am okay.  Once the fucking medical merry go round starts, I will be scared, depressed, angry and frustrated to the thousandth degree...

Virginia will no longer be my safe place...

I am going to this neurologist at the request of someone else.  because I love this person, I will go.  But he better be ready for me to become a " useless fucking even more paranoid scared piece of female shit."  a zombie.   Maybe I will be a better friend if I am medicated to the umpth degree.....

The Dilemma

So I have a huge dilemma.  

Go back on all those drugs for my depression and head shit or not.

If I go back on those drugs:
_________________________________________________
                   My emotions will be muted.
                   I will not ever be sad, or happy.
                   I will have no sex drive, so I don't have to worry about
                   that issue.  I will no longer be able to orgasm.
                  I will start sleeping again.
                  I won't care what anyone says or does.
                  I won't feel the need to take care of myself.  
                  I won't have any desire to go places or even get dressed.
                  I will exist. I won't be able to write anymore, I will not have words in my head, or feelings to write about.
                  I will have no energy, no drive.
                  I won't care about myself, or anyone else anymore.
                  My girls will be gone...
                  The head pain will be gone.
                  I will be easier for friends and family to deal with.

If I don't go back on drugs:
_______________________________________________

                 I will be able to feel happiness, joy, sadness, anger, I will
                    have human emotions.
                 I will have sexual desire, I will have a desire for 
                   intimacy.  A desire to be close to someone.
                 I will be able to have orgasms, to feel sex.  To feel love.
                 I will have a sense of adventure, a want to get out and do things, experience new things, have a life...
                I will also stop sleeping.
                I will have emotional outburst, rage anger, frustration.
                Every sight, sound, taste will be over the top...too loud, to strong, to nervous.
                I will be able to write, I am more creative.
                I will have energy and drive.
                I will take care of myself...grooming, eating, etc...
                My girls will be out more..
                My head will continue to hurt...
                I will be impossible to deal with, friends and family will leave me again, because my stupid fuck head shit will drive them away.

BASICALLY, I AM DAMNED IF I DO, AND DAMNED IF I DON'T.

                

              
                  

Sleep Deprived

I use to be a sleeper.  I use to sleep 10-12 hours a night easily.  But the day after my radiation brain surgery, I stopped sleeping.  For the past 9 yrs my sleep patterns have been all over the place.   

I use to could sleep, lay down close my eyes and actually go to sleep.  Not anymore...I lay down, close my eyes and start thinking.  I cannot shut my mind off...I have relaxation techniques, all kinds, I use ear plugs, have white noise, but still have the damnedest time sleeping.   

If I don't sleep for more than 2 or 3 hours a night, I start becoming even more bizarre...my head starts buzzing, my emotions go nuts...the more I try and fall asleep the harder sleep gets...it is so frustrating because my body will be tingling from sleepiness, yet I cannot sleep...

Yesterday was one of those episodes, I was so distraught from lack of sleep and other emotional distresses that I took a handful of Tramadols...anything to knock myself out...I was too the point that I was ready to go to sleep and never wake up...I was so tired, tired of arguing and fighting, tired of confusion, tired of drama, just so fucking tired....My head had finally go to the "fuck it stage" and I could think was "go to sleep"....

I woke up this morning...WOKE UP...finally I got some sleep,  but I have got to figure out a way to sleep without drugs....

No future

Well this is my life.   __________________________, nothing.

I have no job, no friends, no family.  I have effectively boxed myself into a corner.   Its just me and my dog, day in and day out.  

I can't get a job, because of my fucking head shit.  I am now to stupid to be able to hold a job or anything.   Even if I found a volunteer job, I would just fucking blow that and be asked to leave...

I really am useless to society.   This is my day:

get up, get on the computer and act like everything is peachy...wander around the apartment, flip TV stations, take Boomer out periodically.  sometimes take him to the park...go to various appointments, then come back and stare at the four walls....

I have one friend here, but on their days off, they just want to sleep and veg out.   I can only sit around watching TV for so long...but they have a job.  So of course, on their day off they want to do nothing...

I thought by leaving my husband and OK, that I could be free and finally have a life....WHAT A FUCK SHIT THING TO THINK.  

I could have stayed in Oklahoma and been miserable.  Now I am 1000 miles away from everything I know,  and I am miserable.  

I have tried various times to meet people, get to know someone, but there is no body here for me....I had only one girl, that I invited over and over to go places with me, but she won't.  So, okay.  

I literally have no future, except death.   I have nothing to live for, save maybe my dog.  I do not do alone well....

I am thinking about ending my life....

frustration

Having a brain injury is so unpredictable.   Sometimes, I can experience things or circumstances and not "freak out" over them.  For example:  cooking...I can bake something and if it burns, I will just throw it out and start over.....Other times:  cooking...I can bake something and if it burns I fucking freak out!  Throwing food, dishes whatever against a wall and screaming bloody murder...

Once I was sitting in my car and was going to eat a sub, and it had onions in it, after I specifically said "NO ONIONS" and I freaked...slapped my hand against the side window, its a miracle the window didn't shatter or I didn't break my hand...I did not consciously hit that glass...it was a reaction to frustration of the sub sandwich.

I already have a very hard time with doing some things, like I can't really read anymore, I know how to read, but my head won't let me retain what I am reading, and the words become strangers...Sometimes I need to speak and the words are in my head, but I cannot get them to come out of my mouth...I have no patience...when someone talks and they start giving me too much information, or they start chasing rabbits, I get confused and cannot concentrate on what they are saying...I need direct and to the point conversations...not long winded speeches...I can't keep up mentally.

without patience you live in extreme frustration.  Doctors call "inappropriate emotional responses" the Bulbar effect?? something like that...that is common with head injuries....well shit I have that condition in spades!

The frustration of not having my mind work properly...If I can't do something right the first time I am told or showed how to do, I get freaking so mad...I will feel like a rubber band wound so tight I can't breathe unless I strike out...if I can't break something, then I will turn that frustration on myself and hurt myself, because in my head "I am stupid, idiot, helpless, whatever"  and that makes me fucking furious...because I use to be a smart intelligent together woman...now I am a fucking mental and physical mess....my mind is all over the place, I have no control over the fucking brain tumors, no control over my impulses most of the time...

Some think I am just being a spoiled brat, or looking for attention by acting out...NO NO NO....imagine what people see me do, now imagine what people don't see me do...in secret I will destroy myself more because no one is looking...what anyone sees on the outside is just a small part of my frustration, anger, disgust and irritation, behind closed doors is where I fight myself...

failing spirit

I do not understand how I can be happy one minute then on a dime, I can be depressed, angry or incredibly sad...

One minute I want to live, I love life..the next minute I am thinking about dying...

I cannot stop the constant conversation in my head telling me I am stupid, dumb, ignorant, ugly, ridiculous, and undesirable...

The second I look in the mirror and think, I look pretty or whatever, the fuck head immediately corrects the error...and I realize I do not look pretty at all....in fact, I am very ugly.  Inside and out.

My soul is ugly, warped and demented...my spirit is failing...my mind is constantly at war with me, trying to destroy what is left of my life...I need constant validation that I am worthy...how fucking sad is that...??

Every time someone looks at me, like in public, I immediately look away and try to hide myself, because I hate people seeing the filth that I am...I know that they are thinking "look at that woman, gross, she is disgusting, she needs to stay home..."  that is what my fuck head tells me...

I immediately disregard or dismiss any compliments directed my way...they are lies..

I hate being recognized for anything, then everyone looks at me, and they think and say how wonderful I am or whatever, blah blah blah...they have to lie...

Just once I would love to hear someone say to me "yes, you are right, you do suck, you are ugly and worthless..."  nobody is honest anymore...

jealous of me

It is the strangest thing to be jealous of yourself.   How can that be?

how can I be jealous of myself spending time with someone?  How can I be jealous of being happy and content, just playing with dolls...?  How can I be jealous of myself???

I get angry at the time I lose...I get angry because I don't remember,  I am jealous of the attention "I" get...she gets...

So, in my jealous anger rage, I strike out, destroying my own toys, my own dolls...myself.  I get so angry because I want to be me, all the time...not "them".   I want to be as happy and carefree as "me"..

not as some other person, identity.  I am told that my identity is "who I am"...but my identity is confusing and complicated and aggravating as hell.   

Watching "me" on video, is disturbing and creepy...Like some kind of time warp...listening to "me" is disturbing as well....

Not being in control of "me" is the most disturbing of all...Who is this woman/girl/child?  How much of me is them?

How do I learn to not be jealous of myself...how do I learn to accept "me" all of me...

How do I learn to be normal???  How can I make "me" go away?? and live each day...the whole entire day...as a regular person..

Push-back Kisses

How do you write about
feelings that do not matter?

How do you hear when 
my words are dismissed?

You say you love me, but all
I get are push-back kisses...

How can I touch you and feel nothing,
how is this so easy for you?

Why is it wrong to want 
to love you so bad..

Are you so self-assured of my love
it can be taken advantage of??

How could I have fallen so hard
and been so sure of myself???

I forgot that I am nothing,
why does this surprise me??

Morning pain

I want so much for these brain tumors to go away, disappear.  I am so happy in my new life, I want to live a long time....

But every morning when I wake up, before I even open my eyes, I feel my head pounding, I feel those 10 stupid fuckers screaming "wake up", "we are ready to ruin your day!"   "come on get up and be miserable..." fuck...

So I get up, and act like I am fine...I make my bed, eat some breakfast, take my meds, shower, get dressed and try and have a "normal" day, despite the raging pain in my head...

To strangers, I am normal.  I am happy.  I look good.  Neat and clean, and nice clothes, made up, hair done, etc...but inside I am a fucking timebomb....I hear the ticking with each throb of pain...

I wonder where the tumors are now...have they multiplied and moved to cover even more frontal lobe?  Are they trying to invade new places that can really fuck me up?  sometimes my vision is blurred...are they now behind my eyes???  Are the tumors the ones fucking with my blood sugar levels, have they gone to the place in my brain that controls my pancreas???  

They have already destroyed Melissa...They have erased her life, are they trying to fuck with Sparrows new life too???

I wish all this pain was somewhere else, like in my hand, or leg, not my brain...Brain pain is not only physical, its emotional, cognitive, its my coordination, its my speech, its my vision, its my nerves, its my decisions, its my personality...Brain pain affects all of those and more...Your brain is who the fuck you are...and I am Sparrow and the 10 little pearls...Before long it will be the 10 little pearls and no sparrow....I am waiting for the 10 pearls to become 10 monsters who will destroy my sense of being...

I am sure by now, there are more than 10....every year I add 3-4 new tumors...when will it be too crowded to add more???  Just how many fucking tumors can my head house before someone has to leave???  and that someone will be me....

Every morning, I feel the pain building and spreading...is today the day that I leave? Is today the day, Sparrow is finally forced out?  

There is no medical treatment for me, not anymore...so I wait, day in and day out, for the day that I don't have to wait anymore.....

I am....

I am sadness
can't you see?

Run, run, run
away from me..

You say you love me
well that can't be..

I am heartache
can't you see?

I leave a trail
of shattered dreams
hopeless tears,
and silent screams...

Loving me
Is not free
I will hurt you,
can't you see???

Why, How, Where..

Why do I continue to breathe
when my heart is dead..

How can I continue to talk
when I have lost my voice..

What am I going to do
when nothing can be done...

Where do I find my home
when my mind is lost..

Who is left to love me
when I have chased everyone away..

When will I be happy
If all I am, is sad...