My Story: Chronic Pain Changes a Life but Not the Person

http://nationalpainreport.com/my-story-chronic-pain-changes-a-life-but-not-the-person-8827090.html

https://en.wikipedia.org/wiki/Arachnoiditis

I would like to start this article by thanking Ed Coghlan and his team at The National Pain Report for helping to get the message out about the daily struggles, obstacles and even successes of those who suffer from Chronic Pain.

I have been living with Chronic Pain since late 2009 after I was given an Epidural Steroid Injection to treat sciatica pain. Unfortunately for me the doctor who administered the injection pushed the needle too far resulting in the needle puncturing the spinal cord. The steroid entering into the spinal cord inflamed the Arachnoid layer of the spinal cord causing it to stick or “adhere” to the nerves and the nerve roots. The resulting condition is called “Adhesive Arachnoiditis” an insidious condition that has no cure and creates pain so severe that many have chosen suicide over spending the rest of their life trying to manage the horrible and relentless pain. As this condition progresses scar tissue continues to build up around the nerve roots. For many this will increase the pain, create problems such as the loss of bladder and bowel function and in some cases the ability to walk.

I was 49 years old when this happened to me; I was in great physical shape and was very active. I worked in a very busy Interventional Cardiac Cath Lab at a local hospital. It was very challenging yet rewarding work. Our teams were on call and had to respond to a person coming into the ER having a heart attack at all hours of the day and night. I spent many days working 18-20 hour shifts. The work was intense, an adrenalines junkies dream job! There is great satisfaction in working with a few other well trained people to prevent someone from dying.  This was a second career for me, I had always wanted to work in healthcare, my Mom was a nurse and I was very interested in helping people.

I had owned and operated a 6 store pizza franchise and decided to sell it just before I turned 40. I spent 13 years as a volunteer with Search and Rescue in Washington State where I owned my pizza stores. I moved to Florida went back to school and spent 8 years in healthcare. I would still be working if the injection hadn’t taken that and everything else I considered to be “My Life” at that point from me.

The first 2 years of having Adhesive Arachnoiditis were incredibly painful and depressing. My doctors couldn’t seem to manage my pain. They had me on Oxycodone and OxyContin, 2 very strong opioids that are considered some of the strongest on the market. I would take pills constantly with little to no relief. I would lie in bed screaming from the pain. On several occasions my wife (she has since left and we divorced, she stated “I didn’t sign up for this!”) would take me to the ER where the doctors who knew me would just knock me out. The pain, the frustration and depression of not being able to work, the lack of support from my wife and the financial burden this was creating brought me to come very close to suicide on 2 occasions.

Nearing the end of my second year I met a doctor who was willing to listen to me and try to find relief from the hell I was going through. I told him I couldn’t see myself living for too much longer if this was what my quality of life was going to be like. He had me take a DNA test, a mouth swab, and sent it into a company that will tell you exactly how your body metabolizes medicines. We learned that my body does not metabolize either Oxycodone or OxyContin! So for 2 years I wasn’t getting any benefit from all of the drugs I was taking! He put me on a drug called Nucynta and within a few days I was feeling better than I had felt in 2 years! I could think rationally and my pain level had dropped down to a level that I was able to at least function. In the 6 years that I have had this condition I have yet to find a medication, or combination of medicines that will bring my pain level below a 5 or 6.

In the past few years I have turned my focus to helping others deal with the effects of Chronic Pain. Not just the physical parts but the emotional and mental issues that have just as devastating an effect as the physical pain. I have taken a line from a favorite movie of mine, The Shawshank Redemption, in which Tim Robbins states near the end of the movie “I guess it comes down to a simple choice, really. Get busy living or get busy dying.”  I have learned that my pain, although very intense and disabling can’t be what defines who I am! I will not let it steal my life from me! It is a choice! I have many days that doing things, anything, is difficult or impossible, but on the days that I’m up I keep busy. I spend time playing with my grandchildren, I help at a soup kitchen, I help people getting information on a wide variety of issues either on line or I go to their homes. I can’t do a lot but I can live my life and I can be productive!

I had a dream to live on a boat, everyone said I was crazy! I was told on several occasions “You can’t do that!” Last November I purchased an older Trawler, a live abroad boat that has 2 bedrooms, 2 bathrooms, a small kitchen and a small sitting area. A friend of mine helped me get the boat into great operational condition; he did the vast majority of the work. I wanted to move over to the west side of Florida. We cruised from Ft. Pierce, Florida on the Atlantic side of the state to Ft Walton Beach, Florida in the panhandle. The trip took us around the state, through the Florida Keys, up the west side of the state, across the Gulf of Mexico and down nearly the entire length of the panhandle. Neither one of us had ever done anything like this! It took 17 days! I was in pretty bad pain by the end of the trip but the experience was something I will never forget! My goal was to live on the boat in Ft Walton Beach near my daughter’s home. As my pain and condition has progressed that is turning out to be something I won’t be able to do. However, I experienced something few people in great health ever do; I lived my dream in spite of the pain!

I have talked to many people over the last few years about living with Chronic Pain. I have tried to explain to those who have never experienced it what a very personal thing pain is and how difficult it is to generalize pain, or put everyone in the same box. I have tried to encourage those whose lives have been changed by pain to focus on what they “can” do vs what they can’t! Our lives have changed, there is no doubt about that, but we are still very much alive with so much to offer the world! Another great quote from the Shawshank Redemption is this, “…..Hope is a good thing, maybe the best of things, and no good thing ever dies.”

Filed under: General Problems