I have been absent…for awhile. You see, I have been researching and attempting all viable methods of pain relief to improve my quality of existence; I think I’ve tried everything except Holy water from Lourdes (yes, it’s a real thing). Recently, I had a spinal cord stimulator (SCS) implanted in my back, connected at the T level, to relieve constant back pain and improve mobility on my right leg. This pain and injury was not due to my autoimmune disease; rather, it was from the reckless actions of an unlicensed, questionably-insured driver. It was the breaking point for me; something I didn’t ask for, deserve, or need in my daily life as a chronically ill girl wanting nothing more than a quiet existence. I will pay for the 15 seconds of thoughtless activity of another person for the rest of my life. This post is not about that, however; it is about the flare that reared its ugly head when my body realized something foreign had been placed within and the frantic aftermath of the monkeys trying to expel the demon that now resides in my spine. This post is also about the obtuse topic few care about but all are impacted by – the opiod crisis we are now LIVING.
I have wires along my spine and a battery pack in my ass; no other way to explain that last one. Aside from my round rump now being scarred and deformed, I have extra duties weekly; charging my butt battery so the wires can do their job. The SCS does its job somewhat; my leg does operate more efficiently and my neck pain has diminished when the SCS operates above 22. I should note that I have neuropathy in my feet, legs, hands and arms AND this is exactly what the SCS feels like, only amped up. Imagine you electrocute yourself while cleaning your outlets with a bleach wipe (I’ve done this). The zap of electricity shoots through you and then it’s gone, right? Well, the SCS keeps a continuous feed of electricity running through different parts of your body; this is intended to diminish pain. I cannot say the pain is diminished to a functional level because if I walk through the grocery store for an hour, I am down the rest of the day, unable to maintain balance and literally fall out wherever I am. That one hour of activity results in 10 hours of exhaustive sleep, even with the SCS. I knew the device would not work on my autoimmune diseases and I was okay with that; I really wanted to check off the back injury and move on with my life-long journey of treating and managing my other illnesses – they were enough to fill my plate, really.
As I was recovering from surgery and the resultant flare that kept me down and in bed for three weeks straight, literally unable to wake up or walk more than 30 feet, I read ALOT. I tried to ignore the bad stuff and maintain a strict menu of happy, positive, educational reading material. However, I could not avoid the opiod crisis “news”, if we must call it that. I finally have had my fill and feel compelled to express my experience with opioids and alternative pain management techniques.
I am educated; I served as the director of a multi-million dollar agency that assisted with the development and improvement of communities at the local, state, and national level; I served on a national board to improve community development implementation and provide partnership to federal agencies and congressional leaders. I was seeking my PhD. In short, I had my shit together. I became ill and continued to work until my body and my brain became so debilitated that I could no longer serve effectively in my position, or any position, at which point, I medically retired. I mourned the loss of the old me. I went to therapy. I sought every type of treatment available. I was an avid yoga practitioner and even sought out a teacher who could modify my routine/positions. I practiced Pilates and core training. I thought if I kept moving I would be okay; my body and the monkeys residing within told me otherwise.
I sought out a pain management specialist; a doctor who could help me manage my pain apart from my other specialists, who were busy managing my diseases. This was a proactive move on my part and I think one of the best I could have made. I have attempted physical therapy. I complete the Chronic Pain Association’s pain management program and still refer to the 3-inch thick binder on a regular basis. I completed an innovative pain management program that combined the CPA program and meditation therapy; this was an 8 week, 4 hour/day program that taught the fundamentals of pain management as well as meditation to manage pain. This program was, by far, the most effective, emotionally and psychologically, I’ve ever accomplished and I still recommend it to fellow Spoonies.
I tried NSAIDs, ibuprofen, mind over matter, stubborn pride, and everything in between. I have also tried most of the opioids available. I took myself off them when I found they did not work. In fact, in the seven years I’ve been ill and five that I’ve been treated with opioids through a PROFESSIONAL PAIN SPECIALIST, I’ve taken myself off EVERY opiod except oxycodone; I even took myself off the fentanyl patch! I ask you, would an addict/abuser do this?
I know my body and I know the pain that wreaks havoc on a daily basis. It took me five years to learn to listen to my body and slow down. I am allergic to all DMARDs, which leaves my RA untreated; the only thing I can take is Plaquenil. My pain levels are extremely high and I push the pain threshold daily because it appears the federal regulatory agencies addressing the opiod issue have decidedly lumped every user into one category, disregarding the professional opinions of pain specialists and valid patients. This is the most heinous injustice I’ve seen in the medical industry, save the epipen issue.
I agree GPs should not be prescribing opioids for chronic conditions; that is what pain specialists are for. However, when sickle cell anemia trumps some terminal cancers, we need to re-evaluate the criteria by which we are making decisions.
Before I was approved for the SCS, I had to undergo a psychological evaluation; seems fair, right? When I was accepted by my pain management specialist, I had to sign a Treatment Agreement; seems rational, correct? Why can the federal decision-makers NOT see that this process works? Members of Congress, governors, political leaders are not medical professionals and I would not want them performing my SCS surgery, even in the best of circumstances. Parameters are in place that prevent CNAs and MAs from prescribing medication and performing surgeries. The medical profession has the expertise and structure to provide exceptional care, when they are not bullied into political decisions that affect the lives of patients, who are real people. Chronically ill patients are not addicts, as a rule, and, if they are under a treatment agreement with a qualified Pain Doctor, they are less likely to spiral into addiction and sales of narcotics as a career. Conversely, addicts are going to find drugs anyway, anywhere, even if they have to make them, lest we forget the common household components of meth. Common sense has lost its placeholder in this issue and someone needs to issue a timeout for one to be inserted.
I live with a chronic illness, which results in chronic pain; I am not a chronic pain patient. I live on a limited income because of my illnesses and I’ve adapted my lifestyle. Recently, my dishwasher broke and, of course I cannot afford to replace it. I am now saving for a new mattress; one that will be comfortable for long periods of time…I will need such a mattress when the pain management tools I do NEED and are currently helping are stripped because of a bureaucratic system that refuses to take the time to effectively and fairly adjust a system that is not yet broken but will be soon.