Editor’s Note: Allie is a 25-year old woman who lives in Las Vegas. She is a chronic pain sufferer, and a budding journalist, who will be sharing her perspective in coming columns on the National Pain Report. Here is her introduction for us.
I was diagnosed with Adhesive Arachnoiditis in November 2012 after two spine surgeries, and post-operative complications. I was 22, and had no other choice but to quit my job and withdraw from Georgia State University. I was empty, angry, discouraged — and, truthfully, a little scared. Being bedridden forced me to face the challenges of a life with chronic pain.
Initially, it was unnerving and very frustrating to hear that close to zero reputable doctors could call themselves an expert on the disease. I found the Facebook group of other Arachnoiditis sufferers and was immediately immersed in the world of chronic pain. And boy, what a world it is. Terri Lewis, who has helped me navigate this journey, told me about Dr. Antonio Aldrete, an anesthesiologist in Birmingham, Alabama who is well known in the community for proprietary infusions said to help with the pain caused by Arachnoiditis. When I asked different foundations, scientists, and rehabilitation centers across the US where I could turn for information, and more importantly help, most people sounded dumbfounded or would stutter and ask me to repeat. Arach-noid-i-tis.
As if chronic pain isn’t isolating enough, I really felt like I was totally on my own, left to figure it all out. It was too bad that after a life changing diagnosis my best results came because I went on the internet.
Since doctors didn’t know what was wrong with me, they tended to stereotype me. My experiences at a leading center for rehabilitation of spinal cord injury and brain injury, were unsettling. The physiatrist and psychologist, who were both part of the pain team, used their full authority, it seemed to me, to minimize my symptoms.
The psychologist indicated she thought there was a psychological reason for the crippling pain of Arachnoiditis. I was treated with an inordinate amount of skepticism at every turn and so was my mother. They didn’t seem to comprehend the amount of pain I was experiencing at the time. I felt unnecessarily judged, especially when speaking about pain medication.
One thing I’ve learned with many physicians I’ve dealt with is that if you show them you know too much about a particular medication or procedures, they often think you might be “doctor shopping” or chasing medications.
I was doing neither–I was simply trying to take control of my life.
Just because I was twenty-two didn’t mean that I was going to shrink from having a say in my treatment.
I didn’t then and I won’t now.
Chronic pain patients are bombarded with offers for invasive procedures whether stimulators, pain pumps, epidural steroid injections, or myelograms just to name a few.
As patients, who can be vulnerable and desperate during chronic illness, it’s important we maintain vigilance of misinformed, overzealous, condemnatory medical practitioners. I think we’ve all heard horror stories of unassuming chronic pain sufferers who fall in the trap of this constant cycle of recovery, but never actually recover. A tip I might offer to help field options: really consider knowing everything possible about your doctors, procedures, medications.
At the same time, too much information can hinder understanding, and may actually cloud judgment. I know that is a contradictory statement, but hear me out. Information overload happened to me and I took a break from the noise to really listen to my body and my intuition. My body was in a constant state of shock and distress, which was a detriment to ME. I had forgotten to be present and experience the here-and-now. I forgot to be in the moment because I was consistently planning ahead, managing my day of pain down to the second. My mind was consumed with thoughts of pain; I’m a bit of a researcher at heart, so that amounted to a lot of stuff. To silence the mind is a tall order for chronic pain sufferers, however as I practiced, I noticed. My senses became tuned into instinctual subtleties my persistent conscious mind overlooked. As I noticed throughout different treatments how my body would react I realized that I had honed in on my wonderful intuition. I could now express in new ways the different effects therapies had on me as a whole (mind, body, spirit). This was the single best action I could take, aside from titrating down off of every medication I am taking.
So what have I learned so far, three years later at twenty-five? Take a beat. Be skeptical and informed. Ask questions. Demand answers. And don’t forget instincts and intuition. Your body will thank you later.
Look for more from Allie about her journey in coming weeks.
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