Life After Brain Surgery

A week ago my family was all meeting up at a parking garage outside of University of Maryland Medical Center Baltimore, gathering our belongings necessary for the long day ahead, and rushing inside to get to where I needed to be by my 5:30 appt time. Sadly, the hospital sent us on a long run around until we finally landed right where we needed to be, but we got there. Tension was high among the group, of course. The nervousness in the air; palpable.

I was asked if I was ready, more times than a few. How do you answer that? How are you ever ready to risk leaving your family behind? How are you ever ready to risk not coming back to them the same as you left them? So I lied. I was ready, yes. I lied and said I was fine. I lied and said I was going to be okay. I was petrified.

Questions began, IV was started, prepping was moving at the speed of light, but I was still stuck. Lingering, waiting for my entire family to hug me all at once. What would be my last thing to say to each one of them? How do you decide that? You cannot scare the kids, Kristen. You cannot upset your sisters, Kris. And my God, don’t let my parents feel my fear.

Last night I was asked what I felt in those moments. What was it that I told myself to help me get through it and make the final decision to go through with it.

The answer is my life. I wanted my life back. The vibrant, exuberant, fly by the seat of her pants girl was gone. She was replaced long ago by a zombie of a woman that was barely surviving this world. She could no longer head out on grand adventures, planned or otherwise. She spent her days hardly able to make it up and down the stairs let alone to a school event with homemade brownies.

She couldn’t make it to concerts with her sisters anymore. She had to cancel plans with friends more times than a few. She couldn’t get outside and run around with her two sons anymore. Life as she knew it ceased to exist.

But this morning. 7 days after the scariest decision of her life, that girl woke up at 5 am without an alarm clock, went downstairs without a single creaking or aching bone (stairs are a different story), and made herself a cup of coffee. Do you realize how long it has been since that has happened? I won’t count the nights where sleep never happened and I got up at 5 to start a day after a night of no rest. I’m talking actually slept for hours, woke up, went down, and made my own damn coffee??

Let’s ask my little baristas when they wake. I bet ya it’s been a while.

Good morning, world. It’s good to be back.

Screaming in Silence

Pain, ripping flesh, breaking bones, searing flames of agony.
This isn’t torture. It’s my normal.
Tears flow down swollen cheeks to meet the pool gathered on my pillow. How many more nights will this flare last?
The drill in my ear, pressure building. Electric shocks through my jaw. Someone stop it.
Turn off the power. Cut the nerve. Rescue me. I’m dying. Please help me.

I wrote that poem in the middle of a flare up of the neuralgias I love with. They are always constant, but some days they flare so bad I cannot function. It’s unbelievably frustrating. The pain is beyond what the human body should have to endure. 10 days to surgery. I am so ready for this to be done!

~Kristen

LIFE BEFORE BRAIN SURGERY

Friday I was informed that I am going to need brain surgery. More invasive surgery than previously discussed. And it is a scary, hopeless feeling. What if something goes wrong? What if it doesn’t even fix the issue? Plus a million more questions. Friends have told me to think of the positives. To look for the end result. And to consider that if it’s fixing an issue, then just go for it. But those friends are not able to speak from their own personal experience. They aren’t the ones that will lay on that table while strangers slice them open, remove a piece of their skull, and go digging around extremely close to their brain stem! I don’t know if you realize just how essential the brain stem is; oh ya know, just essential for LIFE!!

And what about recovery? My kids? Work? Life on a regular basis during my recovery? Who will help me? Who will care? The questions are swirling and won’t let me rest. I’ve gone from tears to laughter. Tears because of the fears and laughter because of the stories I will tell a year from now when someone notices my scar that I will be rocking. Shark bite? Nah, too played out. Jumped by a gang of clown ninjas? Maybe!

Thanks for reading my random and scattered rambling. This is the first of many posts as I trudge down this new path. I’m not sure why these cards have been dealt, but I do know that these nerve conditions picked the wrong girl!

 

**Image is my own.

Life With Chronic Illnesses

A couple weeks ago I visited my rheumatologist to discuss my fibromyalgia. I haven’t had too many “bad” days, so it was just a routine visit to discuss meds and whatnot. He informed me that a new medicine I was on (prescribed by neurologist) would likely lower my white cell count causing me to have difficulty with fighting off infections. Yay me.

Today I got about 40 needles in my face, head, neck, shoulders, and back. These needles, though incredibly painful, allow me to function. They allow me to get up out of bed and at least try to be normal. These needles are botox for migraines.

But before the needles happened, I had to discuss some weird side effects from that other medication (mentioned above). I explained to my neurologist what had been going on since increasing the dosage. Skin has been peeling off of my fingers and my feet. I’ve been sick with what feels like the flu. Turns out I am severely allergic to the only medicine that was keeping another chronic condition semi-tolerable. A condition I visit a neurosurgeon about tomorrow. A condition that chose me as one of its few victims this year. Trigeminal neuralgia. So tomorrow I will visit University of Maryland Neurosurgery to discuss surgical options for this pain, also known as the suicide disease.

Have you any idea the fear involved in deciding on a procedure that uses radiation to essentially kill a nerve right where it exits your brain? And even though the pain is the worst I’ve ever felt in my life, this procedure scares the hell out of me! I realize that with the 3 conditions, also known as my pain trifecta, I am not living the life I wish to live. And I want my life back for sure. The risks, though; I’m just not sure I’m ready for them.

At this point, I am not medicated since I had to stop the one and the other makes me way too antsy. I will struggle through one more night of insomnia tonight before making my way on my 3 hour journey tomorrow to see the surgeon. I’m scared.

Fear

With tear stained cheeks, I’ve faced these weeks. 

The scariest of my life. 

The “I’m okay” lies. And happy disguise. 

Hide my worry and my strife. 

Words cannot describe this fear that I feel. 

Walking through a fog, this feels so unreal. 

I’m not strong enough to hear that word. 

I’m not brave enough. 

Forget what you’ve heard. 

The fear is breaking my tough exterior. 

I don’t want to be the next fighting warrior. 

12/21/2016

Kristen R.