The back brace wrapped around my torso is irritating, and the two wrist braces I wear vary between too loose and too tight. The headset for my voice-recognition microphone presses into my left ear and the cable gets in the way of the pen tablet I hold in my lap. The pen that goes with it is worn and wrapped in tape from years of daily use.
A small fan whirs softly on my desk to provide a modicum of background noise so that it is slightly more difficult for the people around me to hear my dictation. A plastic bag of pills sits beside it, six of the thirteen that I now take each day. Crohn's disease. Thoracic outlet syndrome. Lower back pain. This is my reality.
A timer on my computer counts down from 15 minutes to remind me to get up from my desk and move around. I don't really want to, I would much prefer to find a comfortable spot and just rest for hours, but there are no comfortable spots. 38 seconds left, time to get up.
Fifteen years ago I was in my early 20s, married to my college sweetheart, and already advancing rapidly in my career as a GIS analyst. We had a two-bedroom apartment so that I had an extra room to fill with my computers and guitars. Books on Linux system administration and Perl programming lined the shelves above the PC on which I played Ultima Online nightly. My wife and I held no debt, and lived an easy and relatively carefree existence. After a decade of strife in my family I finally felt independent and in control of my own life, and it looked to be shaping up to be a good one.
From the first day I noticed the pain in my arm until the day a surgeon cut into my right thoracic outlet above the clavicle, two years of living hell elapsed. A rotating door of doctors, physical therapists, and specialists plied me with all manner of drugs and diagnoses, and my slight frame endured test after test as they sought a solution. In the end, a sports medicine doctor finally realized the source of my pain stemmed from nerve damage between my neck and shoulder. He referred me to a surgeon at a university hospital that he described as one of the best in the nation for thoracic outlet relief.
The surgery proved to be the final chapter in that period of my life. My wife and I separated, having endured for too long the mental and physical stress that came with my constant doctors appointments and pain management. The last of our savings was spent, and I was unemployed. She had already been living without a husband in fact if not in name for two years. The surgery itself did not result in any change, as the doctor had explained there was a large chance of happening, but he did remove as much of the scar tissue on the scalene nerve as possible.
Armed with the knowledge that the pain in my arms could only be managed, not completely removed, I rebuilt my life. I wore braces to drive my car or to use a computer. This I accomplished by holding a mouse with one hand and pressing its buttons with a magic marker in another hand. Slow and painful, it was the best I had. I met someone else and, much to my surprise and delight, we fell in love. In time, I began using voice recognition software with some success. But the pain never left. I had to be constantly vigilant about my actions. And then, three years after starting over, a routine physical indicated I was iron deficient.
This time I was better prepared for the battery of tests. I kept meticulous records, I actively attempted to remain upbeat, and I did my best to shield my new wife from much of the stress and pain that this new issue brought. After several colonoscopies and endoscopies and blood tests, the 40+ ulcers in my small intestines were linked to Crohn's disease. During this time I lost a significant amount of weight. Each time I ate something resulted in a rush to the bathroom or abdominal pain and cramps. And still I had the arm pain.
After several years of modifying my diet, providing almost monthly blood samples, and receiving iron infusions at a cancer center, I finally recovered well enough to be released from treatment with nothing more than an annual checkup with my gastrointestinal doctor. Occasionally stomach pain would flare up and result in a procedure or acid reducer prescription, but generally I was better, though the arm pain continued.
We started a family. I began a career as an Army civilian. Technology improved, and I now coupled the better voice recognition software available with a pen tablet and foot pedals. The pedals I used as mouse button replacements. My accommodations reached a point where I could comfortably use a computer for leisure activities, at least within certain limitations. For the first time, I felt something close to the stability and general well-being that I had before Thoracic Outlet Syndrome. While the arm pain still existed, I was finally managing it successfully.
During all these years, I managed my chronic pain on my own. Since the surgery in 2004, I had not had any pain medication. Aside from a 2010 visit to the sports medicine practice that originally diagnosed me, I did not have a doctor checking up on my condition. My quality of life directly stemmed from my own efforts. For a decade and a half this continued.
But this past summer several events conspired to change my situation dramatically. Stomach pain had increased during the spring and my G.I. doctor, thinking it was related to my previous issues with ulcers, prescribed an acid reducer. My lower back began acting up as a result of sitting in too many long meetings in too many bad chairs. And after pushing myself too hard, my arm pain had risen to significantly higher levels than usual. This came to a head on a Friday in early September when I spent several hours on a computer. Seated in a poor choice of chairs, I worked on the computer at home with few breaks for several hours. That night I commented to my wife that my pain was abnormally bad. The following Saturday morning the heavy pain still lingered. Without thinking, I took a full dose of ibuprofen, which I had always avoided because of my history of internal bleeding.
That night proved to be one of the worst of my life. The ibuprofen triggered abdominal pain like I had never experienced before, with sharp stabbing sensations above an underlying continuous wave of pain. I could barely breathe. While my wife and daughter slept, I drove at a snails pace to the local hospital. Six hours of tests and heavy pain medication later my wife picked me up. The pain continued to a lesser extent for the next several days. My whole body ached. My back hurt constantly from being folded forward in pain. My entire torso radiated pain.
After several doctors' visits, tests revealed that my gallbladder was full of gallstones and sludge. The entire thing was removed the following day. But the abdominal pain continued, though lessened, and my weight plummeted from 172 pounds down to 147 pounds. In the meantime, the back pain reached a critical point where I could not sit or lie down without excruciating discomfort. Attempting to take my mind off of this ordeal, I sat at my computer among a plethora of pillows but this only served to ignite further pain radiating from my armpits into my chest. I couldn't eat, I couldn't sleep, and I couldn't go to work. Based on my past history, I worried that it was only a matter of time before I once again lost my marriage and career.
In a tearful meeting with my supervisor I explained all of this. He supported my wish to use the Family Medical Leave Act, and I was given the required paperwork. Through my family doctor I began coordinating a series of physical therapy and specialist appointments. My wife suggested I also try massage therapy, so I sold some of my old decks from Magic: the Gathering and used the money to fund three weeks worth of massages and medical co-pays. I began wearing a back brace constantly, going so far as to sleep in it. For the first two weeks my day became a repeating two hour cycle of soaking in a hot bath, using a home TENS unit, lying on a heating pad, and walking upright with the back brace. Over and over, with breaks for appointments, this became my life.
Slowly I began to see improvement. The large blue pills my GI doctor prescribed for Crohn's disease, in combination with the two acid reducers I took each day, settled my stomach down enough that I stopped losing weight. My back pain went from being constantly present, even through hydrocodone doses 24 hours a day, to disappearing for several hours at a time. On good days I could skip one of the hydrocodone doses and only take three pills instead of four. My lower back mobility returned and my physical therapy exercises began to expand to more difficult reps.
So here I am, back at my desk, working as much as I can each day. My lower back has an arc of pain going through it, though I can tolerate it since I just took a hydrocodone. The nerve clusters behind my armpits radiate a burning sensation across my rib cage. Pain pills seem to have no effect here, so my family doctor has me using an antidepressant that has been successful managing chronic pain in fibromyalgia patients. I can't say that I've seen much improvement, but I'm happy to have it. I'm happy to have all of it. The back brace, the arm braces, this irritating headset microphone, all of these things give me a semblance of a life.
I wish I could explain to those around me what it feels like to be isolated from the world. If only I could convey in some way how being haunted by constant, invisible pain affects everything I do. This is not easy though, and in 15 years it has not gotten easier. But despite the pain, the mental loneliness, all of it, I am grateful for what I have. Perhaps the next decade and a half will be more difficult than the last, though the thought terrifies me, or perhaps I will find some escape from this prison of pain. In either case, I try to remind myself that tomorrow is a new day. And, one way or the other, the scarf a friend made me several years ago reminds me now that this too shall pass.