For the last thirty-one years, pain has been a constant participant in my life. Starting with pain from testicular cancer and the pain of radiation treatment, I found myself dealing with leg, hip, groin and back pain from bone, tissue and muscle damage from the radiation treatment. Medication and back surgery failed to relieve the pain and resulted in decreased mobility.
If I hadn’t been blessed with the opportunity to meet, fall in love with and marry Marianne, I don’t think I would have survived the beginning of this life journey. Although I have a very strong faith and had always been able to function as a bachelor, I doubt if I would have survived any of the subsequent journey without Marianne and her love and faith.
At this point, Marianne and I, married for only five years, were really cast out by ourselves, so we had to scramble to figure out how to deal with my pain and new disability. Then there was no Internet and no searching social media for doctors and information about chronic pain and radiation damage. We had to interview doctors who would talk to us and often had to use word-of-mouth to find a doctor who might be able to help us. As I was mainly bound to the bed with excruciating pain, the job of finding a doctor and suitable therapy fell to Marianne.
Over the next couple of years, we found doctors who recommended acupuncture, meditation, electrical devices, magnetic devices, faith healing, distance healing, acupressure and every medication known to man, including opioids. Nothing did more than cover the pain for a short period of time – nothing stopped the pain. Even thirty days in an in-house chronic pain management clinic failed to produce improvement.
At the end of the pain management clinic, one of the nurses suggested that I contact the American Chronic Pain Association (ACPA) to help me deal with the chronic pain. I called the office that day and have been an active member of that organization since. The ACPA sponsors the development of peer-led support groups and circulates information about chronic pain to doctors and the public in general.
I personally have lead many support groups in the last twenty years and have found that talking with others who deal with chronic pain is extremely helpful for everyone involved. It helps to know that someone has an idea of what day-to-day life is like.
All the lessons I have learned from the ACPA and from my experiences of trying to deal with this pain have given me incentive to keep living and fighting for some degree of life with quality.
Every day is a challenge for someone living with chronic pain. The pain I experience routinely (burning pain in my left leg, stabbing pain in my left and right hips and groin, burning and piercing pain in my lower back and all the way up my spine to the base of my neck) takes almost all my energy to handle. Although I spend a lot of time in bed recovering from any activity, I usually can get up and do something meaningful – only to crash back in the bed afterwards. I must walk with a cane and use a wheelchair to help me cope when I have to go distances. I take many breaks to recover from the pain and fatigue that come from just trying to live.
What keeps me going is the strength of my faith, the love I have for Marianne and the love she has for me, the lessons I learn from the American Chronic Pain Association, the currently successful pain management plan using epidurals, and my attitude that I will not bow down to pain.
Dealing with chronic pain is not easy; but one can live with it. There is always hope for a better day! We are not alone in this fight!