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Community Voices
Community Voices
Community Voices

A pain too much

I’ve coped with chronic pain for most of my life and to be honest I don’t know how much longer I can go on. It’s eating away at me now and I’m spending my life in tears, in fear of what my life will be like in 5+ years. My doctor doesn’t get it, I don’t get it myself, my muscles spasm up deep in my spine locking the vertebrae up so any movement then causes more spasm, my neck muscles so weak that anything longer than 2 hours in an upright position causes severe pain and you got it, spasms! I had a lumber spinal fusion which alleviated the majority of my low back spasm but still get them around my hips and down my thighs. But this shoulder pain has been a swerve ball, the intense agony that makes me puke, and then as I pin it to my side just the tension of it being there, this I cannot deal with! Has thrown me into a deep depression and a feeling that if this is what the rest of my life is going to be about then I’m clocking out early. #Baclofen #tramadol #chronic pain # depression

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Community Voices
Kristen Barnhardt

Cerebral Palsy and Baclofen Pump Malfunction

The alarm blared worse than any alarm clock. My mom’s fingers poked my chest, hard, like she was aiming for my heart. Her hands slapped my face and shook my body from the sleep I wanted desperately. “Breathe!” my mom commanded, finally waking me. “I am!” I half snarled, half cried. “You’re not!” The tone of my mom’s voice caused me to open my eyes and look at her, and then at the monitor attached to me in the ICU, beeping angrily, scolding me for the inability to fill my lungs with air without my constant concentration on the task. Oxygen at 5. The green number proved my mom was correct; I was not breathing. Six hours before that I was fine, waiting to go home and eat mashed potatoes. Seven hours before I was on the operating table, going under anesthesia for a routine Baclofen pump replacement. I was afraid of not waking up, but the drugs flowing through my veins were better than any lullaby and soon I was in the dreamless sleep surgery requires. Four-and-a-half hours after waking up from the operation, the fear finally subsided, replaced by hunger, pain and impatience; I had to get up to use the restroom. I got a little lightheaded doing so, but neither my mom or I were too worried, chalking it up to the fact I had been laying down for close to six hours before. When I sat back in my chair, dizziness turned to a splitting headache and my mother suggested I sleep. I slept for two minutes, then my body bolted up and my eyes snapped open. “I can’t breathe!” I looked at Mother, fear making my heart race, but then the peace settled in, and I just wanted to sleep. I started to slip off. In what seemed like less than a minute my room was filled with nurses, who along with my mother were commanding me to wake up and breathe. My mind knew breathing was important, and if I was thinking “breathe,” I could do just that, but inhaling was not an automatic response to my lungs exhaling. All I wanted to do was sleep. I was even at peace with dying if I could just sleep. The tests being run and the faces I saw appeared in a haze. The only clear memory of that time between my random loss of ability to take in air automatically and my transfer to the ICU was seeing my mom cry. The reality that no one had any idea what was happening and that I could die occurred to me. Thirty hours after officially arriving at the hospital, I was released, able to sit up and breathe normally. The whole incident was thought to be an accidental overdose of Baclofen, a muscle relaxant that had temporarily shut down the part of my brain dealing with automatic functions such as breathing. Two days later I was back in the hospital after passing out in the bathroom at home. My hands and feet had gone numb as I sat on the toilet and the room had turned sideways. The cheap toy megaphone my sister had received for Christmas two weeks earlier was grasped in my hand and I yelled for my mother or anyone to save me from falling. My mom came running and I remember seeing her face looking orange and pixelated through my eyes, as if my world had turned into an expressionist painting. The memories and thoughts faded and the next thing I remember is hitting the linoleum floor after my mom pushed me from the toilet, and thinking “I’m going to die on the toilet like Elvis.” My head cleared as I took deep breaths and told my mom the password for my phone so she could call 911. At first it seemed to me the ambulance didn’t want to help, I seemed to be functioning fine but they took me to the hospital after my mom and I insisted. The doctors didn’t want to keep me overnight, but my mom insisted. “She is doing fine,” the doctor pointed out. The doctor had a way of speaking I felt was degrading to my mother. She could see I look fine. I was fine for two days and then I passed out. I was fine four-and-a-half hours after surgery and I stopped breathing. “What if I’m asleep and she stops breathing again?” my mom asked the doctor, “I could never live with that.” The next day I was discharged, seemingly healthy and without knowing a clear reason for why I went unconscious. The days after my discharge went by fine. Nothing remarkable or awful happened, but as I lay in my bed on the nights after my hospitalizations I heard my mom’s words echo in my head. “What if I’m asleep and she stops breathing again? I could never live with that.” Sleep is now far away. The idea of closing my eyes for the last time terrifies me and so I lay awake until the darkness of my room mixes with the darkness of my closed eyelids, and I give in to sleep.I am standing in a tunnel of bright white light. It is so bright it hurts my eyes, just like the overhead lights in the operating room do before I go under. I know I am walking to my death. Instead of seeing heaven I see a red light at the end of this tunnel, and the long drawn out note of a monitor flat-lining surrounds me. It’s annoying and I want to cover my ears, but it just gets louder, the tunnel disappears, and it’s just black with that red pinprick of light representing my life gleaming. Then it shuts off like a TV powering down. I bolt up in bed, gasping for air, my body shaking. As I lie my head back on the pillow I count my breaths. As my lungs fill effortlessly, I close my eyes. “At least I’m breathing.” Everything now is quiet; no long white tunnels to my death, no sounds of the hospital making my heart race in fear. Just me and my breathing. I am alive and at peace with what happens now. As I drift off to sleep again, I know that dream is gone. I know I’ll be OK. We want to hear your story. Become a Mighty contributor here . Getty image by Korawig.