The Disease Called Pain
This is the raw, unedited version of my pain meds withdrawal story, so it’s subject to change, to misspelled words, to the need for links and citations. Regardless of all that, it is raw in another sense — emotional. Over a year later and it still amazes me that I did it. I left Oxy behind me and learned to live with the rollercoaster of pain. Oh, and I quit smoking too.
People say they will not let their disease “define them”. That’s not true.
The Disease called PAIN provides the background noise for everything you do, whether you admit it or not.
A good sense of humor, love of family and friends, good physicians and physical therapists all make for a more complicated definition. Pain, in and of itself, is beginning to be understood as a disease, perhaps more correctly, a syndrome.
There are two stories here. One involves the definition of pain, the discussion of pain medications, and the treatment of patients by doctors, lawyers, the government, and law enforcement.
The other is the personal story of pain, of how it takes over a life and controls daily activity from the moment I wake up and all through the night as I attempt to sleep. Oh, CPAP, you define my sleep. I keep forgetting I have Central Sleep Apnea, not snoring, and it’s much more insidious. A more silent killer — causing heart attacks, high blood pressure and more. New research shows that pain medications can cause Central Sleep Apnea so I’m hoping that my flight from Oxycontin reveals a trip down No CPAP Lane.
This story just seems to go on and on as more articles about the side effects of Oxycontin become available. All I knew about was the constipation, it wasn’t until I began writing this that I realized it probably caused my CSA. The story here is my personal journey through withdrawal, interspersed with Oxycontin details (pain medication discussions will develop over time, especially information from online forums.) My constipation from Oxycontin had progressed to me giving myself injections (gut shots, I called them) in order to “use the bathroom”. It was a miserable state of affairs, trust me, and it shocked me to think that — if I kept using Oxy, I’d be subjected to these injections for the rest of my life, perhaps… or worse, if the injections stopped working. Linzess hadn’t worked for me, btw.
Read the definition of oxycodone, if you haven’t already done so.
Getting Dropped by a Pain Clinic:
My appointment with Dr. Smith’s office was forJanuary 2016. After going to this clinic for over five years (probably more) I only have to go in every 2–3 months because of who I am as a patient. Never abused a medication, never asked for an early refill, never asked to titrate up unless my pain levels reached above a five on the happy/sad face chart, never flunked a piss test and all that good patient jazz.
My meds: In November 2015, I’d worked my way up from regular non-time- release oxycodone, 10mgs as needed to 40mg Oxycontin x 2 a day with the 10mgs for breakthrough. It took almost five years to reach that level of medication. The 10 mg Oxycontin time release worked for a few months but it was obvious it wasn’t stopping the disk pain. Popped up to 20mg Oxycontin which again, worked for about a year(?) before the disks began to do their Pain Dance. The 40mg Oxycontin x 2 a day protocol created a working me, at least a working wife, grandmother, functioning person — not an in-bed whiner with a heating pad and a dime novel.
And then, with no letter, no formal notification — Eastern Physical Medicine & Rehabilitation, Greenville NC — My pain clinic — Dr. Billy Smith’s office, dropped me a as a patient. The medical staff I depended on for years did not work with me or notify me that I’d been dropped from the practice — they just ignored me. There are links a the bottom of blog post detailing how a patient involved in a pain management program is supposed to be treated. Let it suffice to say, those are not my stories.
So, what the heck’s wrong with you, Valerie, you look fine to me. Your gait’s a little wonky but all in all, here you are, an artist and a writer. Working in the yard, walking to the park with the grandsons …
In 1988, I had lumbar fusion. Titanium steel rods held in place by screws, bone graft accomplished by harvesting bone from my right hip, in essence, breaking my hip. I was 34. By the time Dr. Stephen Grubb (NC Spine Center, Chapel Hill, NC at the time) performed the surgery, I could only walk a distance of about 10 feet at a time. I utilized wheelchairs at every Lowe’s or Food Lion, never walking through a store. I could get from the house to the car, so I could still drive my two grade school age daughters where they needed to be, but I couldn’t get out of the car and walk to the auditorium to see their performances or stand by the sidelines while they played softball. My disks were completely deteriorated, gone, and as Dr. Grubb illustrated by making two fists and holding the thumbs together and grinding them. “This is your spine,” he said showing me each fist, “in between each fist, there should be disks, the disks protect the spine, cushion it. You have no disks. None. It’s called degenerative disk disease and yours has advanced beyond that of someone who is 80 or more years old.” He told me I was lucky, I’d never let anyone operate on my back before coming to him. He could fix it. Eight hours of surgery. Months of physical therapy which I enhanced by surf fishing at Hatteras every chance I got.
A year in a body cast. A 15″ scar down my back. It’s 30 years later here in 2017 and that fusion still holds. It does contribute to my pain. I see those titanium rods as part of a swing set, holding up the rest of spine, keeping it swinging. The disks above the rods will continue to deteriorate, to bulge or herniate, to eventually stop supporting my spine. As I understand it, the spine has holes in it, called foramen, and as the disks began to crumble between the vertebrae, the foramen began to narrow. Nerves run through the foramen — which acts as a protector for the nerves. Well, my nerves were beginning to fray inside these slowly narrowing foramen.
That’s the pain. The electrical buzz of my nerves being squeezed and tortured by the narrowing. The bone, the vertebrae, seems to twist and turn and pull on the nerves, specifically up the left side of my neck and my left shoulder. C3-T2, I think.
Many back patients, sufferers of serial surgeries and attempts at pain medications to resolve their pain issues, many of them can tell you the exact dimensions of their insult to their bodies. They use their diagnoses, their surgeries, like business cards at the end of their emails or their online forum posts. I’ve never been that precise with my spine. Lumbar fusion? Check. Which vertebrae? Uhh, lumbar. Cervical disk problems? Which ones? Uh, C3-T2 because I finally downloaded a MRI reading and tried to decipher the radiologist reading. The most information I derived? The words “severe” with each disk evaluation. Say no more, I thought, say no more. I get it. And the Dancing Nancies I get every night when I try to go to sleep — well, if you look up Restless Leg Syndrome, you’ll find it can be whole body movement. That’s why I call it the Dancing Nancies. I’m jumping around like a frog in a science experiment — you know — the wire the dead frog one?
Oh yeah, there are more physically painful, weak areas in my body to discuss. Osteoarthritis, which “everyone gets”? I got the adult version early on. Hence the fusion at 34. I have a metal joint in my right big toe to make it bend correctly. I’ve had basal thumb surgery, rebuilding my right thumb. Interesting surgery, I’ll outline the process later, it is the gold standard for repairing the ravages of arthritis to the thumb. There have been other, more minor surgeries, on my feet. Throw in a hepatic resection and the removal of my gall bladder and the parade certainly becomes a long one. Reciting one’s surgeries or vagaries, the insults upon my body politic — it bores me and certainly must seem tedious to anyone reading this — I won’t go into any more details now.
Let’s go back to the tooth extraction. I called Dr. Smith’s office in January, asking for a call-back for a Provigil refill. After waiting two days, I called back. No return call. It was time to make my next appointment. I called the receptionist and she hung up when I said my name. Thinking we’d been disconnected by the questionable skills of the front office staff, I called back. Same response.
As Larry the Auctioneer up in Williamson always says, “Ain’t no question about it,” as he offers up an item. Well, ain’t no question about it, I’d been dropped as a patient. Someone in Dr. Smith’s office must’ve found the Vicodin prescription. What Billy Smith’s office did was not only unconscionable, dropping me as a patient with no warning or notice, it was illegal. NC law clearly states all pain clinics must titrate patients off of their pain meds.
This is getting too long for one Medium post, you’ll have to let me split it up, post again tomorrow with more information. Thomas’s recipe posted on its own page, see header of blog.