One Size Fits All? Screw It!

Have you ever walked into a store and wanted a jacket with a label that says, "One Size Fits All?" Only to find the sleeves are five inches too long, the hood covers your whole face and pockets are too small? This saying is the epitome of how the medical community has chosen to deal with patients, especially when it comes to those with chronic pain.

May 1, 2014 marked the end of one of the best semesters in school that I ever had. Yes, school was stressful but, for once, I had found a place that met my needs and allowed me to be successful; something that I had only experienced once before. I was beginning to believe that I could finally achieve my goal of obtaining a bachelor's degree.

I had finished one final and had one more to go. I got out of class and took the next bus home so I could rest and get ready for my next final. I remember feeling tight and nauseous. This was not unusual; I often get motion sickness. I collapsed getting off the bus, someone called 911, and I was transported to the nearest hospital. I was diagnosed with a stomach blockage and multiple severe ulcers. I had to have emergency surgery (it was the first of three that I had in less than six months). That night, I also had four blood transfusions and was sent to the Cardiac ICU; with no explanation as to why. The ulcers could have been a result of my long time eating disorder but there were pieces of the puzzle that were missing; some never to be found. One would think that after having surgery, you would have a recovery period and then gradually increase your regular activities. I already had a long list of problems and went into one of the longest "recovery" periods of my life. The first few days, I was lying in bed, counting the minutes until my next dose of pain medication. Anyone who had been cut open from the top of their ribs to their hips vertically would be in pain. The edema in my hands and legs made everything worse. The I.V. was providing liquids, nutrition, and medication to me. The side effect turned my hands black and blue, with swelling that went from my fingertips to my shoulders. Nurses tried my left hand, but the same thing happened. I could not move my head, let alone try to sit up, without crying. Doctors increased my pain medications and added some anti-inflammatories, hoping to stabilize me. But that was just the beginning. Meal replacements, iron, multivitamins; and gas chews to digest anything I ate and drank, were added to my medications; my new normal.

With my limited capabilities, there was a pressing problem: What would I do now? I could not return to my upstairs apartment nor did I have a friends' couch to crash on. The names of rehabilitation facilities swooshed by me as the doctor was telling me it would "take time" before I would be able to return to school and regular activities. How long? Days? Weeks? Months? The nonspecific answer was a passive way of saying that they did not know or care. And why would they? I was just one of millions of people stuck in the healthcare system. My constant questions bothered them, so another medication was added to reduce my anxiety.

After a week in the hospital, a poorly managed rehabilitation center was my new home. I was transferred by ambulance and was scared out of my mind. From the time I got there, seldom did I receive respect, courtesy, information of my rights, and especially not appropriate measures to manage my pain. Being naive, not having a family, and being financially dependent on long-term disability (SSDI) were all factors on their side. Throughout the time I spent there: I had roommates who smoked indoors, were abusive to me, staff that either chose to yell or ignore me, doctors who often ignored my questions and some who changed my treatment plan without...