You always hear phrases like, “Why reach for the stars, when there are foot prints on the moon?” or “When you believe in yourself, anything is possible.” I am some who has always been the type to find motivation at the thought of just possibility, alone. I have always believed in pursuing dreams, in becoming exactly who you choose to be. I always believed fate was just the result of action and reaction. I am by no means saying I do not believe that there are many people in this world, capable of being exactly what they hope to be, even if the odds are completely against them. I do. The only difference in myself today, and myself a few months ago, the words “many people” would have been “anyone”. But, I believe I have encountered the terrible exception to possibility. The exception to a life that can be lived based solely on your own actions, and decisions. That exception, is something that is unfathomable. Terminal Illness. When your biological processes become affected by disgusting painful and debilitating ailments that cannot be stopped. You no longer can pursue, “walking on the moon”. You feel lucky to be able to walk to the bathroom. I am not saying there is no hope or happiness in the life of an individual who is plagued by an incurable, disease that is slowly eating away at their body. All I’m saying is the raw reality of my prior statement is, the tremendous change that comes with illness, takes away one’s ability to participate in life, the way they once had. The range of hope, opportunity, and happy times, suddenly shrinks down to a very small gap of opportunity. Because when you wake up, and you feel like conquering a full day of college classes, and an evening of work, to then return home to tend to more coursework, but as you begin to sit up, you collapse unwillingly back into bed. Your mind tells you GO, and your body is saying, I can’t.
I recently was just hoping to raise funds to pursue treatment at Mayo and it all seemed like I’d get there. But then, within a matter of seconds, that perception of this whole thing changed. All of the sudden, my brain began to feel foggy, my knees felt weak, and excruciating pain began to fill my head. This pain was unlike anything I had ever felt in my entire life. I was unable to blink. It hurt to breathe too deep. It would send me into tears, which then added pressure to my pain, and tears stopped, in exchange loud screeches and moans of sheer pain came endlessly flowing out of me. Of course, this led me to the ER. Where they decided to do a spinal tap on me, came back clear. Sent me home.
Immediately I felt my pain worsening as I stepped out those hospital doors. And the next 6 days of my life, felt nothing like life at all. I was crippled, I was sunk in this dark hole that seemed to not have a way out. I felt as though my bones in my spine were being crushed by a bus. My head had a consistent pressure in it that made the idea of it being cut it open to relieve pressure, almost feel like a daydream, a fantasy. I could keep from screaming if I laid, silent, still, in a dark, cold, comfortable place. With absolutely no distractions. But one move, one strong scent, one gleam of light, and it felt like what I imagine having a drill go into your head felt like. So the cycle would restart. I’d cry, I’d scream, I’d calm down. I did not touch my phone, I was not able to walk anywhere but the toilet, being hugged or touched was not an option, because it hurt. It felt like everything good was being taken from me. I couldn’t even have physical human comfort, in the midst of this all, because it HURT MORE!?! My mind was so fogged by the pain I feel as though I was only partially awake the whole time. I couldn’t talk. I didn’t want to. I couldn’t do anything. I just laid there and felt my whole entire body be owned by a pain that I never EVER EVER want to feel again. I thought I was going to die at one point. I remember crying and screaming and saying, “Oh God, please! Please just make this stop! Make it go away!” “Will this ever end? How do we make it stop? Someone please help me!! Please!!” I sounded as though I was laying on the street after being hit by a car, with crushed bones all inside me, or something of this sort.
I returned to the ER, only to find out that my spinal tap did not heal correctly and all this time it was leaking. The best part was they could do a procedure called a blood patch, to clot the area and eliminate this excruciating pain. The worst part was this procedure was WAY more painful than the first one. I cannot explain what it felt like to go through that. And I won’t. Because it’s over, and I’m glad.
It took about two days for me to regain my ability to walk, move, see clearly, articulate sentences, and actually think clear. But I did in fact, slowly come out of the dark pit that sucked me in.
About less than a week after this, I went to my first appointment with a rheumatologist. Only to find out, I have fibromyalgia. Which meant the pain I felt from all this was amplified by about 5 times what someone without fibromyalgia would feel. But the truth is, fibromyalgia only explains a small inkling of what my symptoms present.. tests are being ordered specialists are working with me.
This is only the beginning…
to contribute to a fundraiser i have created please go to:
www.crowdrise.com/destinationdiagnosis/fundraiser/amandasanchez2
