(Editor’s note: Rob Hale is a 52-year old Missouri man who lives with late-stage Ankylosing Spondylitis, a degenerative and incurable form of arthritis. We’ve written before about Rob and his difficulty in getting opioid pain medication – what he calls the “New Cruelty.”)
By Rob Hale, Guest Columnist
I’m here to talk about what happens when someone like me, who already is criminally undermedicated, gets seriously injured and must deal with the new procedures for treating chronic pain patients.
On August 16th of this year, I slipped and fell, breaking my neck. I know, I know – bad idea.
When I was brought into the hospital, they immediately hit me up with a dose of Narcan (naloxone), a drug used to reverse opioid overdoses. Narcan takes all the opiates out of your system in about 20 minutes, so you can feel every last iota of pain in your body. You also get to go through about a week’s worth of withdrawal pains in just under a half hour. Narcan is now standard operating procedure for any patient who comes into the ER with any form of opiate/opioid in his or her system.
Anyway, back to the fun. I was drifting in and out of consciousness due to the pain, while they took x-rays and CT scans of my neck. It turned out that I had a minor fracture, so they decided it was time to slit me from my skull to my mid back and put two, 12-inch titanium rods and 13 fittings and screws into my spine.
I vaguely remember agreeing to this and putting my ‘X’ on some sheet of paper saying they could do it. One thing I do remember clearly is I made damned sure that once the surgery was over and I was sent home, that I was going to get at least 6 and probably 12 days’ worth of pain medication. I was assured of this not only by the neurosurgeon, but by all the interns and nurses who were attending me.
I only spent 4 days in the ICU recovering from this nightmare of a surgery when they told me I was ready to go home! I was shocked since they had just removed the wound drains that very day.
But I really did want to get home and see my dog and my family, so I thought, “Okay, they must know what they’re doing, right?”
I want you to guess what happens next, kids!
You guessed it – they were finishing up my discharge papers and I asked about my scripts. They said that because I already had a pain management doctor, that is was up to him to provide me with the meds that I would need to recover from the surgery. I explained, just as I had before the surgery, that my pain doctor was not going to be able to see me for several weeks, because his primary clinic is three hours away in Park City, Kansas and he is only in Kansas City one week out of the month. Of course, I called him and begged for help, but to no avail.
While I was recovering in the hospital, I was getting long-acting morphine 3x daily, plus immediate release oxycodone every 4 hours. When I was released from the hospital, they gave me oxycodone to take every 6 hours, and no long acting morphine at all.
Within 3 or 4 days, I lost the ability to use my right leg at all. Having no other medication, nor any other recourse, I decided to use some of the methadone that I had left over from my last palliative care doctor. Unfortunately, it was about 10 years old. But what was I to do? It was that or hit the streets and try to get some illegal medication, which might have killed me since that crap is often loaded with illicit fentanyl.
I was very careful to keep track of what I was taking, but I am guessing the methadone had gone bad, because I had a serious reaction to it and my dad called in the paramedics again.
So, it was back to the hospital for me! Four days in ICU and 5 days in a semi-private room with a roommate who had pneumococcal pneumonia and a toilet that didn’t work, before I was transferred to a nice, private room. Only 2 days there, before they sent me over to a physical therapy facility across the street, where they tried to get my leg to work.
All the doctors there were totally on board with the New Cruelty. One actually told me that people who took more than 90 MME (morphine milligram equivalent) were at a much higher risk of death! It’s amazing to me how quickly they have disseminated this propaganda, and how completely the new generation of doctors have accepted it as the truth!
This nonsense has gone on for years and I am becoming more and more despondent with this opioidphobic world. If you know me, you know that I live with chronic pain. Not just any old pain, mind you – it’s really bad. I have Ankylosing Spondylitis in its most advanced form, which more or less means that my spine, neck and sacroiliac are completely fused. This has caused me daily intractable pain. I’m talking about pain that would drop the average person to his or her knees, praying to God to take their lives away just so the pain would stop.
Adequate Care Phase
I am not attempting to elicit sympathy. It does nothing to ease the unending, merciless, wicked, 9 out of 10 pain that I live with day in and day out, 7 days a week, and 365 days a damned year.
For many years, my pain was well controlled with morphine and hydromorphone. I was taking over 1,000 MME a day and never felt better in my life. During this time, which I like to call my “adequate care phase,” which lasted almost 12 years, I never misused my medications and even went so far as to keep a journal listing every single pill that I took. My palliative care doctor can back me up on this. He was very surprised yet pleased to see how carefully I was using these drugs and how much respect I had for them. I knew they were potentially deadly and dangerous, but while I was taking them – exactly as prescribed – I was every bit as lucid and well-spoken as I am right now.
You see, when you have extreme amounts of pain, opioids go straight to the pain – they do NOT cause any type of high or euphoria. I was able to participate in family functions, help around the house and assist my aging parents -- in short, to live a semi-normal, quasi-productive life. I even opened my own little guitar shop out of my house, to make a little money to supplement my rather meager social security disability income.
Then came the New Cruelty, in the form of a supposedly voluntary set of opioid guidelines from the CDC — or as I like to call them, the medical Gestapo. According to the CDC, I was at high risk of overdose for over a decade because I was taking over 90 MME.
We are now at the mercy of a medical industrial complex that – in collusion with insurance companies and psycho-sociopaths in Congress – have created a fear-based campaign that they have dubbed the “opioid epidemic’ or “opiate crisis.” I firmly believe that chronic pain patients are being targeted for death by this campaign, either by our own hands or by medical complications that result from being woefully undermedicated.
Rob Hale lives in Kansas City, MO. He was diagnosed with Ankylosing Spondylitis at the age of 27.
Pain News Network invites other readers to share their stories with us. Send them to: editor@PainNewsNetwork.org.
The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.