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.

explosive

Why are you driving so god damn slow.

Head is going to explode all over your windshield.

Sometimes I wonder why thoughts only come to me while I'm driving. The windows are down and the music is loud and my hair is blowing in the wind. My mind just wanders and I can't stop thinking. Did I mentioned the my head is going to explode. Do you ever drive and think you're just going to crash. Drive over a bridge and land in the water. Do you ever imagine your own funeral. Does that make me crazy. Don't answer that. 

The pain just doesn't end. There is no relief. No sleep allowed. Pain from here til tomorrow. Random daydreams. Or are they night dreams. Because they happen at night. Sitting on a roof. With someone you don't want to be with. In a glass room that should be covered. With wall to wall newspaper clippings. But you are exposed. Doors everywhere. People walking in and out. No privacy. And you are waiting. No one gets you. They still don't get you. You have closed yourself in. Ostracized yourself. And you don't even care. Random people walk by in your dream. And they all wave. Some stare. And you could care less. You know what you are doing is wrong.
Anything to avoid the pain. You are sweating. Your sheets are wet. Your hair is tangled. Because everything hurts. There is no relief. Go to the emergency room. How will that even help. It's all in your head. You are one big crazy. You want it all to end. Pills. Overdose. You could go in many ways. Blood everywhere. It could be epic. But no one would appreciate it. Not as much as you. Only you would feel relief. Or even joy.
Admitted. Committed. Take me. Free me. Release me. Unleash me.
You win.

Pseudo means FAKE

It's too good to be true
You don't see what's under the surface
Don't look at me
And think you see me
All I want is to disappear
Crawl under my covers
The fan blowing
Someone take a knife
And make a nice incision
In my eyes
To let out all the pressure
So I can feel some relief
A pain free moment
Fluid free lifetime
I need a breather
Just one second
To myself
You ask me what's wrong
Half-heartedly
But you're not even listening
Don't even care
Can't understand
It's because I am ultimately alone
I struggle through all this on my own
Always by myself
My own problem
It's all under the radar
Because you can't see this disease
There are no outward symptoms
Pseudo
Therefore it means nothing to you
It's fake
Non-existent
I fight alone
So I appear grumpy
Or depressed
Miserable
Did you ever wonder if maybe I was in constant pain
That my eyes feel like they are flooding
My head might just explode
That basic conversation is so difficult
Friendships are a waste of time
That I am ruining everything
I just need someone to hold me
Take care of me
Call my doctor
Make everything ok
Hold my hair while I throw up
I need someone to drill a nice little hole
Let out the pressure in my back
In a little cord
All the fluid can come pouring out
Did it ever occur to you
That I might need
Me
Need

PS. This is a joke.

Spasms

I'm all alone. Laying here. In a hospital bed. In some exam room. In the neurology department. There's no one here. But me. And I can't stop the tears. I can't handle the pain. Spasms into legs. Sharp stabbing in my hips. A bruised back. Hole in my spine. In between two vertebrae. Laying here. In a skimpy hospital gown. No one around. Not a soul. It's me. Always me. Only me.

I squeeze the pillow. Try not to yell out. Not a single peep. No noise. Body bent. Back arched. Needles. Five times. Numb. Catheter. Cerebral spinal fluid. Pressure. Paralyzed. I'm silent. Until I can't hold it in any longer. The pain overwhelms. The tears explode out of my eyes. I gasp and try to breathe. The world is collapsing around me. Suffocating. Unbearable. 

I lay here. I'm all alone.

Never Dull

After Shabbos

Driving alone 

Road trip 

Music blaring 

Pop pop

Loud noise 

NJ TNPK

Highway shoulder 

Flat tire 

No answer 

Mile marker

Reading book 

AAA

Spare tire

50 mph

Exit 3

Motel search 

Indians 

Shady 

Rundown 

Econo Lodge

Room 101

Bolted door

No toothpaste 

Broken vending machine 

Eventual sleep

3:45 wake up 

Cursing

Fight 

Loud 

Shouting 

Police

Domestic violence 

8 am checkout 

Orange juice 

Banana 

Forgotten ring 

Pep Boys

New tire 

On the road again 

Monsey 

Friends 

Wedding 

Bride 

Dancing

Sleep 

Couch 

6:45 am

On the road again

4 hours 

Sleepy 

Work 

Sleep

Work 

Hopkins 

Sleep study 

Side effect

My best friend is in active labor. I'm so anxious to meet this baby. Almost like it's my baby. It's actually holding me together. I started taking diamox last night. Again. The dreaded diamox. I was up the whole night. I had to pee almost every single hour. And then when I had to get out of my bed, my head was spinning. Oh how I hate diamox. The side effects take over your life. How is a person expected to function. How can I do anything. Be anything. I can barely lift my head. I know that there are people that care. And want to help. But it's hard for me. Hard for me to ask for help. To turn outward. But it seems it's getting to that point. The stage in life when you can't always be strong. Need a shoulder. Support. Diamox will do that to you. Rearrange your life. Your mind. Your every move. Wonderful.