November 18, 1999Dear PainPal~
You asked me to tell you a bit about myself.
I was hurt at work 15 years ago, a back injury. I was 41 years old at the time and had always enjoyed an active, productive, and fulfilling life. Lumbar surgery was given as the only alternative. I kept working after my first surgery. I had a great job that I loved and no place to go but up~!
They did two laminectomies, a year apart, but my pain continued to get worse. Then they referred me to a great neurosurgeon who did a fusion using Steffe plates and screws. Even so, my pain continued to increase. Because of permanent nerve damage, I became less able to do many of the simple things in life I'd always taken for granted. I willingly tried nearly every available treatment, but without much success for the most part. Four years ago they decided to remove the "hardware" in my back. While I was in the hospital, I got something that left me feeling like I have a terrible case of the flu most of the time ever since. No one can tell me exactly what it is, and they say they can't cure it, they can only treat the symptoms.
Complicating things, I was diagnosed with post-traumatic fibromyalgia at the pain clinic I went to after the fusion didn't relieve the pain. More recently, I've been diagnosed with chronic fatigue syndrome as well.
Because of all this, my life has been changed tremendously. I thank the pain clinic for teaching me so much about how to manage chronic pain. I learned how to do many of the usual "tasks of daily living" in new ways and I learned better coping skills.
I've been really fortunate to find good health care people. Together we form a pain management team. I consider it my responsibility to learn everything I can about pain and chronic illness management. At first I read every book I could get my hands on. I'd never used a computer until five years ago when I began to hear more and more about personal PC's.
I bought a computer and a stack of PC "Dummies" books, taught myself enough to get on line, and joined an e-mail chronic pain support group. That was just the beginning. The Internet opened up a whole new world for me. Before this, I felt very alone and isolated. I didn't know how to talk about pain, much less tell others how it feels and how it's changed my life. I really looked up to doctors, and found it especially hard to talk to them. When I began to realize they couldn't just fix me and send me on my way, I started to get scared. I'd never faced anything like this before. Too, I felt somehow ashamed for being disabled and for not being able to figure things out for myself and control it. I didn't want to believe that I had any limitations. I wanted nothing more than to be able to get on with my life. I wanted my old life back, and for a long time I wasn't ready or willing to accept that this wasn't possible or realistic.
As you know, chronic pain is a silent illness. It doesn't show. People expect people who look well to be well. I was never one to complain, and I did my best to hide my limitations from everyone else. Getting on the Internet and learning that there are so many others who understand and share what I'm going through allowed me to "get real." On the Net, I set out to find out all I could about my condition and I became part of an incredible support system. I learned how to make a web page and eventually put up my own web site devoted to publishing good information on chronic pain and illness. This gives me something useful to do, as my health permits, and allows me to give something back to the community that has given so much to me.
I have a varied medical background. My father was a doctor, and I developed an early interest in medicine. The largest part of my working life was spent working in various medical groups as an x-ray (RT) and lab technician, and as a doctor's assistant (I'm not an RN, but was a certified emergency medical technician.) I also did some private duty terminal cancer patient care and worked for some years as an EMT for an ambulance service.
Before my injury, I was working as the government purchasing agent for a city. After my surgeries I wasn't able to work, much less do any of the work I was trained for. I wasn't about to give up, so I took all the time I needed to attend college. I graduated when I turned 50. I loved working and my intention was to find something I could do to earn a living in spite of my injury. I majored in psychology with the goal of becoming a clinical psychologist in mind. Unfortunately, my condition continued to get worse over time and my doctors told me that I could no longer work. This was a severe blow to me, and accepting the reality of it was so hard. Eventually and reluctantly, I applied for and was accepted by Social Security Disability. Chronic pain not only affected me physically, it affected me financially, socially, emotionally, and spiritually as well.
I've been in constant pain for nearly 15 years, now. I'm fortunate to have good doctors and a good support system, and so my pain is being managed as well as it can be. My ability to do things is pretty limited. Managing my pain is a constant struggle, but I have a reasonable quality of life under the circumstances and I always hope that some new treatment will be discovered that will improve it.
Have a gentle day,