My Journey Dealing with Illness and Chronic Pain Part 1

Hi,
I wanted to share my story about dealing with illness and Chronic Pain. I hope it may help someone else, even just one person. It is a long journey so I am doing this in a few parts.

My relationship with Pain started when I was 17. I hurt my back lifting a 100 pound bag of potatoes. The doctors wanted to do surgery but I declined I felt I was too young and I was right. I had back problems on and off for years after. I had a bulged disc but besides occasionally throwing my back out which was painful. I was OK. I could do everything I did before.

Life went on and I got married in 1990. We moved to Hawaii and I opened my own business. I felt like nothing could stop me. Business was good. I loved the Island life. I loved my wife and the life we were creating. I also loved fishing and went every chance I could. I got pretty good at Marlin fishing and big game fishing. This is hard on one's spine. And one day while fighting a 360 pound marlin. I felt something give way in my spine. I was in the chair all strapped in but I knew something was very wrong. I was pumped with adrenaline. We landed the fish and tagged an released it. When I got out of the chair I fell down. My back could no longer support me. The pain was horrible. I went to the hospital. Long story short I had burst two disc. Surgery was now a necessity. I had pain in my back and my legs. I did not think it could get worse. I was so wrong.

I had my surgery getting a fusion of my L3-4-5 with titanium implants. And by all accounts it was a success. I could walk again. I worked hard through the PT. Pain was very manageable. I went back to work. I had some trouble with my legs still and some pain but nothing I could not live with. I swam in the waters of Kona every day. That seemed to help. We were thinking it was time to buy a house and that soon it would all be behind me. I was so wrong.

In 1997 I contracted Viral Encephalitis. Swelling of the brain due to a virus. There was an outbreak several people died. I remember very little of it. But when I came to several days later I was told I should have died. I was plagued by headaches afterwards. Loss of short term memory. I was a mess. I had seizures and slowly my business and life started to fall apart. I had one very good doctor and after several hospitalizations he told me I needed to go back to the mainland where they were better equipped to deal with this sort of thing. My insurance dropped me due to a pre existing condition. My back. I now suddenly owed 250 thousand dollars.

I left my life in Hawaii including all my belongings, cars etc. and returned alone to Santa Cruz. My wife and I split up. Long story but I can't blame her I was no longer the same person. I stuttered and forgot everything. I was told this would not improve by many doctors. I applied for Social Security Disability and attempted to get my life together. My back had suffered through all the seizures and was becoming very painful. Along with the piercing headaches I was not well. I was told when I returned to Santa Cruz I looked like a concentration camp victim. My hair was falling out and I weighed 120 pounds.

I was blessed to have a close knit supportive family. I found one doctor who told me that I could improve and that saying I wouldn't was the old way of looking at traumatic brain injuries. They now knew you could get better it just took time. He said wait five years and anything left over at that point would likely be permanent. I applied for medi-cal while I awaited Medicare. A long process. My prescriptions cost 700 a month. It was killing me financially. I became seriously depressed. Something that runs in my family. I was joyless. My IQ which had been 143 had dropped in 1/2 due to my short term memory.

I noticed after going through something like that all you want to do is tell your story. You want to talk about it. But this is not always healthy, not for you or for those around you. There is a fine line for sure. Telling people your limitations is fine. Confiding to a close friend is fine. Playing a sad violin everywhere you go is not fine. You desperately want people to understand what you're going through. But I have come to learn that is expecting too much.

Lesson number I. Lower your expectations of others.

Realize there is no way for them to truly understand. Don't become a pitty party. I know for some of you in the middle of dealing with chronic pain and illness this may upset you. But I think it is important if you are to regain your happiness and not become isolated or bitter and resentful. For me I just became numb, I felt nothing good and did not care.

When two people greet each other someone almost always asks " how are you?" very few people want a real answer. If you become the person who answers that negatively every time you see someone, it will have consequences in your relationships.
I learned this the hard way. One suicide attempt and two admissions to the psyche ward. If I am not doing well I now say " I could complain but it doesn't help. "This normally gets a positive response. I don't need validation from others.

Lesson II: Seek help when you need it.

I got a counselor I met with every week. With her I could complain unrestrained. She taught me a balance. And once again my life slowly started to return to some semblance of a life. My Social Security Disability kicked in. Pre-existing conditions were outlawed. I got a prescription plan. I still suffered form pain daily. But I learned coping skills. Learning to cope in a healthy way is key to getting your life back. You can choose to focus on the negative. You can say to yourself. I know I will not get any sleep tonight again. My pain is horrible." Or you can choose to realize that while that may be true the pain does always pass eventually. You do have good days, hours or minutes. It's hard but choosing to focus on the good when its in short supply but it helps. When I was in a pain flare would just repeat " it always passes:"

I was making great progress. And then it happened. The worst pain I have ever had. Burning, electrical zaps, odd sensations, tightening twisting pain in my pelvic area. This happened every time I sat down or layed to to sleep. It became a nightmare. What happened was the scar tissue from my previous surgery had wrapped around my pudendal nerve. I saw dozens of doctors. Stanford etc. Every night was torture. Meds did very little. Surgery was too dangerous. I was truly ready to give up completely. This was a level of pain I had not dealt with. I even begin to feel guilty for considering my old pain as bad. Because compared to this it seemed like nothing.

Lesson III: Do not compare suffering. Not your own or others. It serves nothing.

Look for part two soon. I did overcome much of this. I am working again. And while I am not cured I am much happier and doing better. I feel joy again. I would like to share how I got there for those that are interested.