First Post: A Little History…
I thought it might be a good idea to let you know a bit about my situation before I go rambling on about life, the universe, and everything…
I began my journey through the darkness on a windswept spring day nine or so years ago. With a foreboding of things to come, I was stricken with a searing pain through my left side, going in just below my belt in the front, and coming out of my back about six inches above it. It was excruciating! It felt as if someone had just run me through with three feet of hot Toledo steel! I cried out and instantly broke into a streaming sweat. I couldn’t breathe. I couldn’t think. I couldn’t speak. The moment seemed to last a lifetime.
After an eternity, it let up a bit and I was able to make it inside and lie down. The pain persisted; a dull throbbing ache; burning away at the nerves of my left side. I sought the doctor, who at first tried to make light of it, but all he could really offer was some dope for the next 15 or so days. I took it. All of it. Then I asked for more.
Finally, after about a month, the pain evaporated. One minute I was walking hunched over, the next, I wasn’t. I felt like someone suffering from a voodoo doll attack! I swear I could almost feel them pull the rusty steel pin out of the doll. I could feel my inflamed skin sliding along the metal as it was slowly withdrawn; leaving me in no pain but wondering “What the hell?”
Over time, I would have attacks like this two or three times a year. Each was a little stronger, and lasted a little longer. I fought my way through and only stayed in bed during the first day or two. the rest of the time I was busy building my own repair business. I had no time to be sick! I had a wife and six kids to care for. That, and I LOVED working! It was a blast. Every new set that came in was a puzzle, a test of knowledge. When I found and fixed the problem, I could hear crowds of imaginary fans applauding and shouting out my name. In short, life was good.
The end of my old life came about gradually. Day after day rolled by, always with some amount of pain. After about two years, an attack came on that never relented. The steel blade was back in my side to stay. I tried valiantly (I think) to maintain the appearance of normality, but that became harder and harder to achieve. The months ground by, with doctor’s visit after doctor’s visit. After six to eight months my doc and I tabulated my pill usage to date. It came to something like 3000 tablets of Vicodin,and 1800 pills and other pain killers (Pentazacine mainly). He finally referred me to a pain specialist.
It turns out my pain specialist was truly special. He could really cause me pain! Every visit, without fail, I would be broken down into pieces and then re-assembled right there on his exam room table. He even got me to scream once or twice. We switched painkillers. Now it became with Morphine with a Vicodin chaser. Yay.
Two years I spent in that office. We tried everything imaginable. Ultrasonic treatments. Spinal taps, Lidocaine injections, steroids, anti-depressants, (One of which, interestingly, caused me to vomit daily for almost 11 months until I ran out on a camping trip and couldn’t refill. Needless to say I stopped taking that one…) and physical therapies galore. My condition continued to deteriorate at a seemingly accelerated rate. About this time I was approved for disability.
Of course, Social Security rejected me the first time round. (I hear that is standard practice nowadays..) In my settlement hearing I got lucky. My attorney asked the work expert from the gov’t ” If the descriptions of his condition are accurate, is there any job he is qualified to do?” He answered, “No. He is just too high maintainance.” Fun to hear, that. *sigh* (A quirky aside, the judge refused to let my attorney do that ever again. As the hearing was to determine whther the injuries (and thus my disability) were real, it made the case a virtual slam-dunk.)
My doctor presented my case to the Northwestern Physicians Conference held in Seattle, Washington, in 2006. No one had any real ideas we hadn’t tried. I was told my condition was most likely permanent at this point and that I should consider major life modifications. Yeah. Like my life hadn’t already been ‘modified heavily’ by this point!
18 months ago I was applied to a Regional Pain Clinic. After reading my submitted file(s),(6 or so inches thick at this point) I was accepted. It was the best thing to happen to me in a very long time. I didn’t know it at the time, but this would drastically alter the way I viewed my disease. On my first appointment, after filling out boatloads of forms, I met with a pain specialist. He told me that I was ‘criminally under-medicated’ and tripled my dosage on the spot! Wow!
For the first time in several years I didn’t have to walk like Igor! What a difference. It was like the first breath you take after having to hold it for a long time. I reveled in my pain relief. I had spent innumerable nights in pain, alone in the dark. Now at least I didn’t feel alone. After all, I was now part of a “team“. Unfortunately, though my input is still taken into consideration, I no longer feel the wonder that i did at the beginning of my relationship with my pain doc. (Though I am forever grateful to the modicum of respect and relief he has given me.)
That brings me up to the present, for the most part. I will be writing about both my past experiences and my present ones. I will try and find some way to let those without this kind of pain know what it is like to have your freedom and dignity taken away from you by happenstance. What it is like to be a prisoner in your own body. I will also try and let others like myself no that YOU ARE NOT ALONE, though it may feel like it when you are sweating in agony in the middle of the night. If you have stumbled upon this, don’t be surprised if you recognize yourself here. What would YOU do if someone told you tomorrow that you will never work, run, play in the yard with kids, or ride a bike again? I thought I knew. Now I know how truly naive I was……