My Story: Treated Like a Junkie

My Story: Treated Like a Junkie

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.

Cerv 3I 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.

Cerv 1My 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.

Mike Noland

Mike Noland

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.

12_7.jpgJames “Mike” Noland lives in Texas.

National Pain Report invites other readers to share their stories with us.

Send them to editor@nationalpainreport.com

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.

Authored by: Mike Noland

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Jason

I am pleased to hear that you had pieced together a somewhat basic form of survival due to your chronic conditions. I am a chronic pain sufferer as well and it disgusts me to no end when I read stories like yours because we all have them in regards to dealing with medical professionals out their whom should have their licenses choked around their pompous necks. I wish we can hook them in the neck like the movie, “The Matrix” and load the program “Chronic debilitating Pain” just to give them a taste of what we have to endure each and every day just to get out of bed in the morning

Mike

Dennis Kinch – I would love it if you could let me know what clinic you are going to in Boulder Co. We have a cabin in Fort Garland and an looking for a clinic that refills pumps so I can get mine refilled without driving back to Texas

I’m glad you are able to get some relief, mike, we are being heard, there are too many of us to ignore. Thanks for sharing your story, it is so right-on, as a pain patient, I relate to so much of your story, as well as many others who have written their stories. I hope that you can continue to move forward, and continue to find reasons to try to find a way, to make another day.I too have family that I want to live for. On the darkest of days, when I have to find a reason not to give up, I take out the photo albums. My life in pictures 🙂 It helps to see the kids, now adults, the grandkids that are still young, it’s what saves me. Keep the faith, peace & love…

Gina Lewis

I hate taking these drugs but without them I’m miserable.
My pain Dr recently went to Thailand t pain Dr oy agree with all you guys are saying. I am not only a chronic back pain sufferer but also in the health field. I’m a RN.
I have been made to feel like a druggy. I have a complicated case. I can’t have an MRI. I have a pacemaker and defibrillator so it’s not possible.
So I was seeing a pain doctor. I went to him with a flare up. I could barely move on walk. I was nearly in tears. What does he say to me???? I cannot find a reason for your pain. Have u cut back on the percent yet? I was so mad I could of smacked him in the mouth. They want to do these injections. They are not even FDA approved and haven’t worked for me so that was my last visit there. I found a new dr. When I’m treated poorly I report them.
I’m now at the point I need a fusion. I found a good dr. Listens and is caring. Remember guys. U r paying them!!!!

CHRISTINE PORTER

i totally understand your position in this painful life we share!!!

JEFF G

Thanks Mike, I feel better today even with the pain, I am having you gave me a morning lift !!! I know your thoughts, I just wish those without could feel our pain and needs for just 5 min. They would be laying on the floor screaming like they needed something like RELIEF?

Susan Underwood

Mike, I am so, so sorry for how you are treated by the very people who are supposed to be there to help you.

Hey Mike! Welcome to the NPR forum. And welcome to the world of chronic pain. I won’t get into my story, you can look it up if you want, but what I wanted to say was, I lived in ColoSpgs when I first got sick and had all the troubles I had with doctors and insurance companies. I was new to any kind of sickness or injury so I did what I was told as I was led by the nose through the gauntlet of poor medical treatment. Most of my medical treatment was in Colorado, a great state but with very poor pain and spine medicine, state-wide. There is also a huge insurance lobby here. I found out recently that there were no regulations in place in the pain clinic industry til 2010. I’m researching further to see how true that is, but if it is, and the quote is from the CDC, it means that during my 10 years of being mistreated by the system, I was a pawn in their “new way to make a lot of money” style of pain management. This would explain why we tried everything imaginable to no avail and every time something failed, it was my fault, because “I was an addict”, or “I wasn’t trying hard enough”, or “I was faking, or….” This also explains why they seemed more interested in the numbers than in me or my affliction. The sad, funny part is – how well they were organized against me. If only they were this organized for me, I could have gained an extra 10 years of happiness. It was only luck and coincidence that allowed me to go the first 10 years befuddling their system and tests and stuff. At least 20 doctors, insurance agents, lawyers, therapists and even my employers were in on this set-up in ColoSpgs, but when I ended up in Boston, a homeless, disabled pile of…I lucked into a pain clinic at MassGeneral hospital. It turns out – there were doctors who were doing it right! There were clinics who understood the hard to diagnose, rare diseases that come from chronic pain and they were set up for that. This was back in 2004, which I’m finding out was a “change pattern” in pain treatment due to clinics that were doing things right. This gave me hope and provided a light at the end of the tunnel and I have been an advocate for proper pain treatment since. It astounds me however, that there hasn’t been much movement in the “change” system I saw almost 10 years ago! Back then, I was meeting “the new wave” of young, understanding doctors who seemed poised to take over the broken system and I’m sure they’re out there…but where? At any rate you sound very energetic, positive and vital for someone who has been through the ringer. I personally would like to hear more about that part of your adventure. How much did your faith, your church,… Read more »