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... 

Bruised

I have been told by many recently that I should share what I am feeling. Not hold back. Playing the martyr. Adult. The one always in control. I'm afraid. Afraid that if I share, I will never survive. I will unleash this flood of tears that is suffocated so far down in my soul that I will not be able to stop. I will drown if I open up.

The truth is that I am bruised. Inside and out. My skin is black and blue. The staples go way deeper than my skin. They puncture my heart. Each metal piece cutting deeper and deeper until I am almost see-through. Non-existent.

I'm tired. Worn out. Beyond exhausted. Too much energy needed to pick up all the pieces. Again. Put everything back together. Function. Would you be surprised if this time I just can't. That I just want to give up. To be done.

Have I not lived long enough. Gone through it all. Put in my time. Why is thirty not considered a full life. I've given it all. I've lived. I'm tired. No more.

Whatever. That's it.

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.

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.