Surgery #8

They came to get me that Friday evening. Transport that is. Two women wearing nets on their heads, chatting the whole time about their lives. As they wheeled me into the elevator on the 12th floor, “bump” one of them called out to me. The pain was so overwhelming, shooting through my lower back. My back that had been cut open two days earlier to stop my leaking spinal fluid. Here I was having to come to terms with another surgery. Was I avoiding reality? In denial. Most probably. 

We get to the large pre-op room and I am placed in a little cubicle. Two men come forward. One steps close to the head of my bed and informs me that he is a graduate student and has to ask me some questions. Ok I think, here we go. And then he stupidly asks me if I have ever had any surgeries. Umm hello? Are you for real? Have you even read my file, I ask him. He steps back as if a wounded puppy and then the next guy steps forward. 

Now this guy looks more seasoned. Not his first time at the rodeo. I ignore him and watch the TV above my head as it silently plays Will & Grace. Alex is his name. He has a faint Russian accent and informs me that he is the anesthesiologist and apologized for his acquaintance. He clearly sensed my frustration. Alex is one of those doctors who emanates bedside manner. He stood there holding my hand and chatting as we waited for my operating room to be ready. He was trying to rile me up, kept telling me to curse if I felt like it. We schmoozed about his family and career and my past surgeries, good experiences and bad. I felt validated and listened to. 

Finally the time had come to head to the operating room. They asked me if I could scoot from my hospital bed onto the operating table. I find that table laughable. How is a person meant to actually lay on that tiny board without falling off? I always ask what a fat person does. The operating room staff snicker at my questions and sarcastic comments. I try to wiggle my way but cannot maneuver or bend my back without screaming in pain. Alex and the grad student grab my arms and lift me onto the table. Holding a mask over my face and reminding me to breathe deep breaths. It’s not working, I am still alert. I feel the needle puncture my hand as they search for a vein for a second IV. I wince and Alex grabs my hand tightly while gently rubbing my forehead and whispering that all will be ok and I am doing great. 

That is the last thing I remember as I drifted off into a silent reality. I woke up less than two hours later as they pulled the tube out of my throat, me vomiting everywhere. Wheeling me directly to postop, it was then that recovery would begin. The last four months would no longer dictate my life. This surgery was going to be a solution. No longer the bandaid approach.

To be continued... 

Five Minutes

Have not been able to write in a long time. It has been many challenging months. Seems to be very difficult to get a break. 

Eight surgeries since March and my body is just not responding well anymore. I have just been discharged from the hospital on Tuesday after twelve days and two painful surgeries. 

This is not how I planned on entering another year. I was hoping to move forward. Finish school. Make something of myself. 

And instead, the hospitalizations are getting closer and closer. Constant visits to the emergency room. Spending more time with the neurosurgery residents than my actual friends. One rolling vein after another. My body can't do it anymore. My mind cannot calm down. 

All I want is to heal. To feel alert and alive. Be independent. Make my own choices. Be in control of my own body. To feel comfortable in any position. Be rid of this constant chronic pain. No more painkillers. To sleep. 

No more. I have had enough. It's gotten to a point where I cry for my mother. Who have I become. This slobbering, pathetic person. Can't get my act together. 

I whisper to myself throughout the day. Just get through the next five minutes. 

My mind is constantly running. Mostly at night. When sleep should take over. Instead, the pain and the thoughts take over. Reminding me of how awful life is. Of all the pain. The things I cannot do. 

I lay there for hours at a time dozing in and out of delirium. Imagining the worst. Dreaming and creating holocaust-like stories in my mind. Reliving memories that never happened. With people who are not here. Are not in my life. Or cannot even talk. 

I think of my mother. A lot. And I cry for the parents I wish I had. The home I wish I could go to. A cocoon where I can feel safe. Loved. Taken care of.  

I cry for my future. A future that felt so close. At the tips of my fingers. Slowly slipping away. I cry for my independence. I can't even take a shower on my own. My head is partially shaved. I am not myself. I cry for no reason at all. Being overwhelmed and exhausted should be enough of a reason. 

That's all for now. I need to lay down. 

I can make it through the next five minutes. 

That's all that matters right now. 

Five minutes. 

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

permanently agitated

Am I agitated because my head hurts
Or does my head hurt because I'm agitated
Questions I ask myself
Every single day
Does everything have to feel
Like it's falling apart
Collapsing around me
Curve balls being thrown
Directly at my face
Tripping me as I move
Is the anger real
Or is it chemical imbalance
Am I kidding myself
Not going to therapy
No antidepressants
Faking this positive life
Suffocated by my own thoughts
Unable to handle real emotion
All sadness masked
Expressed as anger
Bubbling at the surface
Internal discomfort
Emotional immobility
Can't a girl catch a break
No pain
For a few minutes
No aggravation
For one day
Support
Attention
Love
Wouldn't that be nice
To feel like you belong
And not constantly abandoned
Over and over again
When will the agitation end
In others
Myself
Tell me. When.

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.

Anesthetic

Sleepless night

Early morning

6:30 am

Phone calls

Secretaries

Waiting

Blood test results

Traffic

Higjway

Underground parking

Building maze

Glass walls

10:30 am

Vitals 

Heart rate 

Med list 

Risks 

Stomach 

Clean back 

Shot 

Local anesthetic 

Numb

Waiting 

Lumbar puncture 

CSF

Isotope

Dye

Bandaid

Lie flat

2 hours 

Oxygen 

Blood pressure

Boredom

Uneasiness 

Elevated slowly 

Wheelchair 

Basement 

Nuclear medicine 

1:30 pm

Table 

Images 

5 minutes

Suffocation

Surrounded 

Bikur Cholim room

Potato bureka

5 year old 

Lakewood 

5:00 pm

Table 

Repeat images 

Tech 

Unknown

Traffic 

Side roads 

Home 

Sore 

Nauseous 

6:13 am

Train 

Circling hospital 

Basement 

Table 

Scans 

8:00 am

Home 

Headache 

Sleep

Work

5:30 pm

Nausea 

Puke 

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.

Empty Tears

The tears. They are tears that don't come often. They hide inside. Refuse to leave their post.

You were supposed to protect me. Supposed to love me forever. Never supposed to leave my side. You were supposed to be my best friend. To love me. Forever. You were supposed to keep me. To hold me and never let go. You were supposed to please me. You had one job. To love me. To see only me. As your one and only.

But you forgot. You forgot about our love. You forgot about me. You got distracted. You chose your religion. You saw my pain. You saw me cry. You knew how much I hurt. But you chose your religion. Every single time. Your empty religion. Empty words. Swaying back and forth. No meaning. All by rote. Because it's all you knew. You couldn't think for yourself. You couldn't choose me. You chose your shell instead.

I was in the goddamn hospital for ten days. You thought I was going to die. How could you not hold my hand. How could you not comfort me. I was dying. I had no family. You were supposed to be my family. My support. My anchor. So you said tehillim. I needed your hand. I needed your love. Not for you to be the hero. Where were you. I needed you to hold me. So what if I was a fucking niddah. Do you think it was right for me to call the rabbi and beg him. To tell you to hold my hand. Is that how life is supposed to be. Is that what my life should look like. Is that the life I signed up for.

Do you think about me. Do you realize that you have damaged me. As you live your pretty little life. In your pretty little house.

How could let me go through that day. Have a friend scrub me in the shower. To get off all the hospital markings. As I throw up all over myself. Throwing up my pills. And then your goddamn mother comes to pick me up. Do you not feel guilty. Not at all. Or have you conveniently forgotten. And then your mother let me lay on the floor and all those women commented how cute it was that she brought me with her to work. Or how about when she helped me get undressed. Or how about when your mother walked me down the steps and helped me dunk in the goddamn water. Do you know what that does to a person. She let me dunk once. Because I was too sick to dunk more than once. And then she dressed me. There you were. Fucking waiting outside the side door with a wheelchair to wheel me home. As I throw up outside the shul. For all the men to see this pathetic woman in a wheelchair throwing up.

Do you think about that night. How I went to the mikvah sick as a dog just so you would take care of me. Does that sit with you. Did it ruin your life. Or did you forget. Did you move on. And then you threw me away. I let my soul go. I let it fly away. You watched it shrivel. And then you stepped on it. And you did all in the name of religion. A religion I don't subscribe to. No thank you. You can keep it.

And now what. I'm supposed to just move on. Forget. Live. Keep moving. Keep plugging away at this life. Where are those tears. Where is that religion. Why is the emptiness always there. Let the soul back in.

Not so easy.

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.

The Real Story

I was diagnosed with Pseudo-tumor Cerebrei in November, 2009. Was admitted in Hopkins after a bunch of misdiagnoses. At that time, they found that I had a venus stenosis (which from my understanding, means a vein in the back of my head is small). They had discussed Stenting the vein. But it was decided to start with the medicine route. I also had third nerve palsy and 7th nerve palsy, with a lot of vision loss, specifically in my peripheral vision. I had received various lumbar punctures, all showing elevated pressures. And had a spinal drain. I was seen by Dr MA, a neuro-ophthalmologist at S and continue to see him. I was taking Diamox for fluid drainage and Topamax for my eyes.

In May, 2012, after taking myself off all meds because I didn't have insurance, i started having symptoms again and was admitted to SN hospital. There, I received spinal taps and decided to get a shunt. I did not want to go back on medication. My surgeon was Dr S, who inserted a non-adjustable peritoneal lumbar shunt. After my staples were removed, I began to feel much better and had been managing healthily for two year plus.

In October of 2014, I moved back to B and began seeing Dr A again. Presented with good visual fields and good vision. I also began seeing Dr MW at H as my new neurosurgeon to manage my case. He recommended that I meet with Dr DR at Hopkins to have a neurosurgeon familiar with my case in case of complication.

In July of 2014, I began feeling symptoms again. Headaches and nausea and after calling Dr W, it was recommended that I go straight to H ER. I was cleared by Opthalmology and never seen by Neuro. CT scans and X-ray showed nothing and I was sent home and told to follow up with my neurologist. Dr. W's office was very difficult to get a hold of. I was finally sent to Dr YC, a headache specialist and colleague of Dr W. With only a consultation and no testing done, she said that it was most likely not migraines and felt very certain that my symptoms were because of my shunt. On August 20, I went to H and had a lumbar puncture with contrast and then did three Shunt Patancy Studies over a period of 24 hours. A week later, i was seen by Dr R who confirmed that the shunt has malfunctioned and is not draining CSF. I am currently waiting to hear from Dr G's office in H to schedule a CTV. Dr R would like to find out if the I am a candidate for Stenting due to my Venus Stenoses before committing to replacing the shunt. I have not been able to reach anyone at Dr W office to get medication treatment in the meantime and went to my general doctor, Dr E R at S H. He prescribed Diamox and Zoloft and left messages for Dr W and his nurse practitioner CW. Dr R's secretary was informed by Dr W office that they no longer wanted to follow my case and felt that I should be seen completely by H.

So yeah...

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.

Migraine Cocktail

Once again

Back in the ER

5 pm

Friday

Flashbacks 

Uncontrollable pain 

Mechallel Shabbos 

Left alone 

Abandoned

Fend for myself 

Catscan 

Waiting room

X-ray 

Blood drawn

No good veins 

Nausea

Headache

Benadryl

Reglan 

Migraine cocktail 

11 pm

Waiting room 

Criminals 

Psychiatric patients

Homeless people

New iv 

Oxycodone

Back to the waiting room  

Dilated eyes 

Bright lights 

2 am

Exhaustion 

Seeing grey 

More doctors 

Another consult 

Resident

Attending 

Opthalmologist

Neurologist

4 am

Wide awake

Back to waiting room 

Remove iv 

Discharge papers 

Security 

Taxi 

6:30 am

Shabbos 

Home

Pain 

Headache 

Sleep 

Never ending 

  

Hashgacha

Sometimes there are these moments that happen. It's very rare but when they happen, they blow you away. Blow you away big time. I struggle with religion and bigotry. I don't get how G-d can make people suffer. Be it money, health or unhappiness. I don't get why certain people have been allotted a painful and bitter existence.

And then once in a blue moon, I get a zap. A reminder. G-d whacks me on the head and says "Look! I'm here!" And I remember that I am glad I'm not in control. That if I had final say, my life would look much different. It would most likely be a disaster. A definite disaster.

Since I am such a fan of going to specialists, I went to my pediatric neuro-opthalmologist last week. (triple specialty yay) My anxiety level was sky high. I hate going to his office because I know the torture my eyes will endure. It's also pretty stressful to know that it's possible to fail a test at this point in my life. You can't even study. Your eyes just get judged on how they perform that minute. No one cares how nauseous you feel or how your heart is racing. Most people find the visual field test to be a walk in the park. For me it brings back awful memories and flashbacks. I start getting sweaty and breathing becomes difficult. I start thinking of my ex, of hospitals, and the smell of the iv drip. I start hearing doctors yelling at me. I feel abandoned and ill all over again. That I fail everything and can't keep my world together.

But this time, I was able to hold it all in. I finished the test in record timing and managed not to throw up. Very few blind spots. Yay. And then the big news. This doctor is as blah as they come. He basically has no personality. He's definitely a nice guy, just not Mr. Personality. He asked how I was doing and commented how he hadn't seen me in a long time. I went on to tell him all about how I moved to NY and ended up getting really sick AGAIN and how I chose to get the shunt implanted. I told him how it changed my life. Saved my life. All of a sudden he became animated. He then informed me that they no longer give shunts to Pseudo-tumor patients in MD.

Wait what? I couldn't believe what I heard. I was in literal shock. He basically said good luck to anyone suffering from this awful disease. That no neurosurgeon will perform the surgery in all of Maryland. How he had a girl come to him the week before who would have benefited tremendously from this surgery. And no surgeon would help. Are you kidding me? He was so happy for me. He told me that when I go to my appointment with the neurologist, I should tell him how happy and healthy I am. Get him to see what a mistake it is not to operate on these poor souls. It changed my life.

And then it hit me. I moved to NY on a whim. A spontaneous decision. That many people thought was dumb and careless. That I was running away from my problems. And then I went skydiving. And again, everyone thought I was being careless. That I didn't care about my life. But no one realized that I was so happy to get sick again. And no not in a crazy way. I didn't want to die. I needed to close that chapter in my life. A few chapters. And yeah, I walked out of that hospital with crazy debt. But I walked out with my life. My life. And the glimpse of a future. It was the first time I was able to see the future. My future.

So as I sat there with my eyes dilated and my queasy stomach, I felt truly grateful. I feel overly grateful. It's not often you see a revelation. A nes nistar. This was a revealed miracle. Out in the open. Obvious Hand of G-d. Choosing the path for me, whether I realized it or not. Guiding me in the right direction. Always. Whether I like it or not.