Wake Up

I'm still here
And I am tired
I need a break
From life
From everyone
But mostly from myself
A minute
Would be nice
Of calm
Freedom
From reality
Life
Just one second
Pain free
No thoughts
Sleep
Why does my body
Betray me
Just need a break
Not sure how much more
I can take

You Don't Know Me

You think you know me but you don't.

Outside
I am a doer
A fighter
A leader
I am motivated
And loyal
I will be there for you
Generous
Kind
Loving

Inside
I am weak
A patient
I am in pain
I am scared
Lonely
I am a failure
Sad
Static
Immobile

I have officially been told that I have a medication overuse headache. So add that to my three other kinds of headaches and we could have a party. Oh wait, it seems my head is already having a party and I wasn't invited. So not only do I have bronchitis. But I also have to stop taking all meds for 5 weeks. Gotta ween myself off my addiction to pain meds. All the while suffering from a terrible withdrawal headache, attached to my migraine and occipital neuralgia. Not to mention my IIH. Which thanks to Hopkins, we have no idea what is going on. I just get to fall apart. And suffer in constant agony. And all the while, I have to function. Go about my regular life. Pretend like there isn't a war zone in my skull. That I don't feel like I'm being attacked by shooting fire. That I won't combust at any minute. From sheer pain. I have to go about my day like nothing is wrong and I am totally fine. Work. School. Volunteering. No biggie. When the truth is. Most days I want to curl up and shut down.

How could Hopkins dare tell me that come January, I will have to find a local neurologist to manage my care. And in the next sentence say my case is quite complicated. How could you dump me and expect me to manage. No one wants to deal with me. Have I become that patient. Have I become a nuisance. Life fading out of my eyes. Suffocating under the weight of my pain. Of my diseases. How can you tell me six months ago that you will admit me for testing and then not follow up. Tell me that there are no beds. No neurosurgeons on staff. That you are understaffed. And receiving over 300 calls a day. Aren't you the top hospital in the world. Innovative in your field. You say now that you will schedule me for DHA and ICP monitoring. Find out what is causing my chronic pain. But I don't believe you. You only seem to care when people are dying. Is that what you are waiting for. For me to completely fall apart. Puking my guts out. Unable to go to work. To school. Confined to my bed. My couch. You need me to get to the point before you will help me.

But do I even want to be admitted for testing. Shave my head. All to find out there's nothing wrong. That I am just a mess. Can't get my life together. Who will stay with me. Take care of me. I can't be the patient. The needy one. I am the strong one. Dr. Rabbit. My fear of being alone is overwhelming. Of never moving on from this chapter. Never being free. Pain free. I am desperately trying to live a productive life. Unemotional at work. Working my ass off in school. But this pain is overwhelming. It's debilitating. I cannot function. I cannot move. I cannot succeed like this. I am a shadow. Living half a life. With no relief. No break for the future.

You think you see me. But you have no idea.

ICP Monitoring

You know it's bad when I give in and go to the doctor. Again. The question is do we research the cause of these headaches aggressively? Or continue to "manage" things. I seem to be all talk in front of the neurologist. Confident that I want them to figure this shit out. But when I get home and research the testing they would do, I must admit... It kinda  freaks me out.

Or is it just that I don't want them shaving part of my head. My hair is finally so beautiful and long. Do I sound crazy? Or the fact that I have no one to talk to about this. Or better yet, wouldn't tell anyone that I would be in Hopkins for three days with a catheter in my head. I know I can't blame people if they don't know. But the truth is I'm sad and I'm in pain. Yes, even strong, obnoxious me needs someone right now.  Someone to talk this through. Someone to hold my hand. Tell me everything will be ok and that this is the right step.

To help with my diagnosis. Am I in remission or not? Are these low pressure headaches? Cluster headaches? Migraines? Or is it just my occipital neuralgia? Maybe my shunt is draining too much. Or maybe I've just convinced myself in the shower that I'm being paranoid. It's the summer. I always feel sick in the summer. This will pass, come cooler weather. Or that I'm not taking care of myself. I'm stressed. I have trouble with food. With sleep. And all these things are affecting me. Causing my head to feel like an explosion will go off anytime I laugh, cough or sneeze. Totally normal, right? Or how about the nausea and the acid reflux. Do I sound attractive yet?

So you know what I do to make my life better? I went cold turkey. Stopped all my pills. I told the doctor that I have had enough. I need relief. I have always believed that quality of life is better than quantity. And no, don't assume that this is me being suicidal. I'm trying here. Get it? This is me making an effort. I do want to feel better. Even if there is no one around. No one that really notices me.

Side point, I finally did something good. And again, I told no one. Because that's me. Ms secretive. Living a silent life. But you know what? Fuck you all! I'm going to stress about this and figure it out on my own. Just like I always have. And when I figure it out. I'm going to make my own decision. And no one one will tell me what to do. And then I will make something of myself. And I will never look back.

Don't you love how I'm all talk. Now you know the truth. I'm one big fraud.