I am one of the chronic pain patients who battled pain for decades due to multi-level degenerative disk disease; ruptured, bulging and slipped disks, and a discectomy from C-2 through T-1 with titanium plates anterior and steel rods posterior.
I have been told that my entire neck looks like a Tinker Toy erector set. I have a Medtronic pain pump installed that pumps opioids (currently fentanyl) into my spinal fluid for a constant epidural. I also wear fentanyl patches that I change every 48 hours, and I take oxycodone six times a day for breakthrough pain.
I still have up days and down days. I lost a 34 year, 6 figure job with a fortune 500 company when I finally could not endure the pain any longer, and took off a couple of weeks to try and get things under control. While I was on leave, which turned into 2 years, I was basically bedridden, with the majority of my activity being the trip from the bed to the couch and back again. I had no life, no family interaction, and no sex life.
During this time, I was unable to return to work within the time given (1 year) due to delays in getting approval for a spinal stimulator to try and get away from the drugs. But due to the extensive metal in my neck, I ultimately could only get approval for the pain pump.
I also was taken advantage of by my insurance company, when I failed to get an update sent in time by my doctor, even though they had one two weeks earlier that said I was incapacitated and getting worse. But the insurance company said that I was okay and had to return to work since the doctor did not extend my leave. They cancelled my short term leave and basically stopped my pay, my benefits, and my prescription coverage for over 6 months while I tried to appeal.
My patches were costing $600 a month and the oxycodone $300. I had no money and no access to my 401k. I was in limbo. I applied for Social Security Disability and was approved in three months. But the long term disability policy that I had paid into all those decades dropped me like a hot potato.
After changing my lifestyle dramatically, we survived by the grace of God and our church.
I still have one pharmacy that works with me. Every other pharmacy I go to treats me like a junkie with needle tracks across my forehead begging for drugs. They refuse to fill my prescriptions and they question how long it has been since I had a script filled.
I always get an argument about getting something filled a month earlier. I tell them to look at the date or the year. But they still say we don’t honor scripts from any pain clinic, pill mills, and all of that.
I try so hard to honor the doctor’s directions; any problem, anytime, I call the doctor and get the 3rd degree. Immediately I am accused of trying to get more drugs.
I was in Colorado and we went to Pikes Peak at 14,000 foot elevation, when I felt my pain pump shut down. We hurried down but I spent the next 8 hours in excruciating pain with 3 live ruptured disks and additional pain in my neck, back, hip, leg and just about screaming in pain.
We went to the ER in Colorado Springs to get my pump restarted and they accused me of trying to get drugs. I told them I don’t want drugs, I just need my pump restarted. I couldn’t sit down or stand up. I was miserable and I truly wanted to die.
All they could tell me was that they don’t treat chronic pain and I need to see my doctor. After 8 hours, as I was screaming in the ER and they had done nothing but take my blood pressure, all of a sudden my pain started getting better. I realized my pump had restarted.
I walked up to the nurses’ station and told them I am going home now, my pump restarted. The nurse acted surprised to see me doing so much better, but the main nurse mumbled something like, “I guess he got tired of the act when he realized he wasn’t getting anything from us.”
The longer I live with chronic pain, the more I realize that the system is going in the wrong direction. While medical science has created a way to give people like ourselves a second chance at life, our bureaucratic society is focused on narrow minded knee jerk reactions and a “one size fits all solution” to a huge problem. Gone is the day that our medical care is conducted on a case by case basis.
What we have now is the ability to see a better life and hope for a better life, but we only get to stare at that life through the locked gates that society has built and is building around all of the medical breakthroughs.
That being said, all is not lost. I went from being in life altering, challenging pain that severely limited my every activity, to a more stable and potentially active lifestyle. I have learned my limitations and am constantly redefining my envelope of activity and physical abilities. I have a life. I am functional. I am capable of doing so many of the basic life activities that just a couple of years ago I had lost, with little to no hope of regaining.
We all have a responsibility to do our best to educate society about the existence, the need and the multiple solutions that are out there for people in chronic pain — and the need for responsible solutions that are customized for individuals based on their needs.
James “Mike” Noland lives in Texas.
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The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that! It is for informational purposes only and represents the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.