Tuesday, February 1, 2011
Living Behind a Mask
At any given time we all adorn a mask. For some, it is to hide a deep secreted vice. Some it is to shroud a part of themselves they are unhappy with, or to become someone they are not. My mask is quite different from those altogether. I suppose a little background is in order before I reveal what is the cause of my masquerade.
About a year ago after a hard day of refitting a new engine in a relatively new VW GTI I noticed a feint dull pain in my hands. It was nothing serious, it was the kind of pain you got as a child after writing 100 sentences out on paper for disobeying the teacher. Blaming this on being a mechanic and overworking myself as I often do, I shoved it to the back of my mind. The pain persisted but was far from being chronic so it was manageable. With much persuasion from my wife I decided to at least get it checked out by my doctor. A fifty dollar copay and two x-rays later he prescribed a steroid pack and sent me on my way. I knew just from the way he described the treatment that it was fairly common. He recited the risks and the treatment plan of my medicine as if it was the opening line of a telemarketers spiel. I took the pills I rested I got somewhat better.
However this dull ache returned and evolved into a serious pain in my hands radiating up to my forearm, only this time it was chronic. Many people who have not suffered chronic pain simply cannot "Know what I am going through." That phrase gets tossed about in similar ways to "Thank heaven" and those who are not afflicted by chronic pain have absolutely no idea what I am going through. Every decision I made to use my hands was a weighing out of the benefits of doing the action, to the consequences of those actions in terms of pain. The tricks that chronic pain plays on the mind are nearly as bad as the pain itself. The most dreadful thought of chronic pain is knowing that nothing you can do will take away the pain, and it is this that amplifies what pain is already present.
The only thing that alleviated the mental part of the equation was self-diagnosis. I was obsessed with symptom checking and the reading of articles of possible causes. Everything from Lupus to Lyme disease raced through my head. "Is it autoimmune?" "Could it be nerve related?" "Could it be related to a botched lumbar puncture?" The ladder question is referring to a procedure that many mothers are familiar with. A long needle is inserted between two vertebrae with a goal of puncturing a disc of fluid to test for various afflictions. It is similar to an epidural in practice, the way it differs in method is it is extracting something as opposed to injecting something. Perhaps my neurologist was having an off day because he proceeded to stab me eleven times into my spine in attempts to withdraw fluid. Each time like an electric wire that seemed to be infinitely hot, in and out, in and out. It took everything in me not to scream out in pain. At times I knew this was the cause for my pain, but now I know that was my brain drawing conclusions based on a traumatic experience.
It had been six months that I lived in chronic pain until I could see a doctor. The 90 day waiting period for insurance benefits to apply when starting a new job is the cause for the wait. Fortunately the doctor I saw was sympathetic to my pain, which oddly enough is rare in my experience. Doctors are apprehensive to start a treatment for an otherwise healthy 25 year old man who complains of pain. After his recommended full blood workup was performed and interpreted he referred me to a rheumatologist. This spawned a flood of future doctor visits and failed hypothesis for the cause of my pain. I saw neurologists, hand surgeons, orthopedic doctors, and diagnosticians. I was told everything from therapy to my diet was the cause of my pain. The most troubling pseudo-diagnosis came from a Vanderbilt neurologist who diagnosed me with depression. When asked if perhaps chronic pain was the cause for my blues this doctor was convinced that my depression was the cause for my specific, localized pain. I think doctors lose sight of the weight that saying something like that has on a pain sufferer. Most of the time I waited weeks to see these doctors, and each time I held the hope that just maybe one of them could help. Then, being told something like what I was told absolutely devastated me.
At least I had Dr. Meyer. He was my general practitioner and although limited in scope of assistance he could provide, he was the spark that started my diagnosis. He took it upon himself to speak to a second rheumatologist for a second go around with diagnosing. This time around my Prednisone regiment worked, and for the fist time in a year I had glimpses of what it was like to not wear my mask. The mask I wore was to cover up the severe pain I had been experiencing. When I told people that I had chronic pain most didn't even believe me. I was so good at hiding it I sometimes doubted the pain myself. I had to, I was not letting this consume me. I did not don my mask because I wanted to, I did it because I had to.
More tests and treatments later I have now (as of last week) arrived at my diagnosis: psoriatic arthritis. An especially painful autoimmune disorder, and in my case it is in advanced stages. The weight of uncertainty being lifted is enough to give me hope that one day I will live without without symptoms. New medicine that science has provided will allow me to be almost 80% pain free, and actually help fight the damage already done. I look forward to the day I can take off my mask and live life.