A Desperate Plea

Hello, my name is Alyxandrea, and I’d like to tell you my story and I would very much appreciate your patience and attention, because there’s a very important moral to my story that I believe you would find eye-opening.

I was born May 14th, 1990. I came into this world in the most horrific agony you could ever imagine. You see, when my mother was in labor, I was trapped, hooked around her pelvic bone and the cord was around my neck multiple times. They lost my heart beat, and at the time, the doctor did what he knew. He reached in and dislocated my right shoulder, prying me out, and then performing CPR. By some miracle I lived, but I couldn’t use my arm, and I screamed for months. The only thing in this bright world I knew was pain, from the very moment I came into it.

Eventually, through persistent physical therapy, I regained use of my right arm, though I was never able to straighten the elbow out. I was diagnosed with erb’s palsy as a result of being born with true shoulder dystocia, and thus my life began.

My toddler years were unfortunate. I showed excessive clumsiness my entire life, though there was no idea why until I was an adult. I was relatively healthy and happy for many years, showing promising intelligence despite beginning my time in this world dead. These few, precious years, I will know as the only time in my life I was not in agony.

Shortly after turning 10, I was in a bicycle accident that changed everything about me. I was always slightly off, but the accident introduced me once more to my first moments in the world. I flipped the bike going very fast down a hill. I remember the pavement coming up towards my head as my feet went straight up. I blacked out, and woke a few minutes later a good 10 feet from where I impacted, with my neck and upper back in the worst pain I had ever known. Being young and indestructible, my family didn’t think much of it, as I went back to playing not 2 hours later. Little could anyone predict that this was the accident that started it all.

Suddenly, I began having these horrible pains in my back, spontaneously. I began suffering from migraines and almost daily headaches. Doctors simply gave me a few ibuprofen and sent me on my way.

A few months down the road, while my mother was in the hospital with sepsis after having my brother, I was at the roller skating rink with my girl scout troop. I was having fun and participating in games, when I did the splits to show off. I’ve always been unusually flexible, so I wanted to impress my friends. I was rushed to the emergency room by my father after I started screaming and crying after doing it. In the E.R. I learned I had torn all of the ligaments around my kneecap and was put in a leg brace for nearly six months. My elementary school, being full of adults who didn’t know kids could be in pain, wouldn’t let me use the elevator, so I had to learn how to climb stairs in a leg brace.

Someday, my leg healed and I was back to being a kid again, with the exception of chronic back pain and now, occasional knee pain. When I was 16 I was diagnosed with arthritis in my knee, and sent to a chiropractor for my back, but it wasn’t helping. I began hurting more and more as the days turned to months and the months to years and no doctors cared. Eventually I was taking over 1800 mg of ibuprofen a day and my activity dropped substantially. My ankles began dislocating partially almost daily, and my knees both began suffering. I started twisting my good knee often, and falling down more and more. Still no one helped me.

When I was 22 I had another accident. This one I refer to as the catalyst, because it threw my entire life into disarray. I was a groomer, and I loved my work. One day I was grooming a rather large australian shepherd, and went to lift him. When I did, I heard a loud pop in my right shoulder. I braced for the pain, but when it didn’t come, I felt relieved.

The next day I was unable to use my arm at all. It hurt so bad, and it felt hot to the touch. I saw an orthopedic doctor who told me to just not use it and wait a few months. I waited. Again I saw him and he put me in physical therapy. I went and within 10 minutes the physical therapist called my orthopedist and told him there was something structurally wrong, and I was being physically blocked by something because he could not move my arm.

Half a year after my accident, they did a surgery on my shoulder. I had multiple bone spurs, one shaped like a hook that was cutting the muscle with every movement, and my collarbone had fractured and been held in place by the amount of swelling I had. When they opened my arm up, the collarbone was almost powder. They shaved it off and rotated my bursa, which was also inflamed. Then it was back to PT for another 6 months. My pain became intolerable, my right shoulder muscles atrophied, my left shoulder started to hurt, and all of the pain I’d had before was now even worse. I was suffering.

Some time later I started fighting. I went to doctor after doctor after doctor searching for answers. I changed jobs, finding one I could do without using my arms too much. One where I could sit, because my back and my knees hurt so bad. I went to every doctor and did every test and every stupid procedure and holistic treatment they threw at me from meditation and acupuncture to neck injections. Eventually I found a few doctors who all had a small piece of the puzzle that were the answers to my problems. MRIs that showed nothing, labs, xrays, nerve conduction tests, all came up normal. Somehow, though, I was diagnosed with dystonia, fibromyalgia, and facet joint syndrome. Do you know what they did for treatments? Muscle relaxers, some nerve blocks, a few epidurals, almost an entire year of steroids (which gave me diabetes, thank you), and nerve ablation.

Do you know what has worked?

Nothing.

After the nerve ablation I’m in even worse pain and now I struggle to use my hands. My neck is in more agony than my shoulders, which still also hurt, and my upper back is in so much pain I can barely stand it. My knees and my ankles dislocate almost daily, and I’m unable to do anything anymore. I can barely hold a fork. I’m now on actual pain medicine, thanks to my ablation, but they’re already trying to take that away, altering it to now be oxy and ibuprofen, putting more emphasis on going on ibuprofen, which has never helped ever since I was a child. I’ve been flagged by some as a drug seeker, an addict by others, and a hypochondriac by some more. “You’re too young to hurt so much” I hear. Yeah, I am, and yet here we are. I discovered a disorder called Ehlers-Danlos Syndrome, which would explain so much of my problems, including the famous clumsiness, but yet I cannot find a single doctor in over 300 miles to test me.

I have racked up over $80,000 in medical debt just trying to survive. I’ve been denied any actual procedures that could help, and no one will treat my pain properly. I’ve been suffering for almost my entire life, however short it’s been, and not one person has actually helped me. My pain specialist in Omaha, over 200 miles away, has been the only one to keep trying after every failure. He’s the only one who seems to genuinely believe me. The others have all given up after one or two attempts. I’ve had neurosurgeons and pain specialists and oncologists and rheumatologists and orthopedic surgeons and therapists and psychologists and even a stem cell doctor all shrug me off as either an addict or a lost cause, or my favorite, blaming my weight. (I weighed 98 pounds until I was 14, I was in pain long before I was heavy.)

I keep grasping at every possible lead on someone who could do something. Someone who could help me, in any way. I don’t want to be on pain medicine, I don’t. I hate being drugged. I hate the feeling. Please believe me when I say I’ll try anything at all to feel better, yet the medicine is the only thing that makes me able to function so I can keep fighting to find someone who could possibly know how to help me. This has been my entire life for so long, an endless cycle of pain and hurting and doctors and helplessness and hopelessness and desperation for someone to help.

I am going to be 28 in a month. I’m not even halfway through this life. There are millions of doctors and specialists in this world. Someone, surely, has the answers I need and the ability to fix me. Is it so much to ask to be able to go through the day without hurting? Is it so much to ask for someone to help? I have so much I want to do. I want to study radiology. I want to have children. I want to be someone more than just a pain sufferer. My body just hurts so much.

I’m hoping someone will read this story and find it in them to help me. I know someone out there has to have answers, or ideas, or options. Please help me, I have so much life I want to live.

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