June 24, 2024

I Took Oxycontin And Fentanyl. The Opioid Crisis is Complex.

I don’t like to talk about it. During the opioid epidemic, to survive, I needed high doses of these medications that were killing hundreds of thousands of people.

I have a rare disease called sarcoidosis. For 12 long years, it attacked parts of my brain, causing complete episodes of blindness and vertigo so severe that I would collapse when I got out of bed. The pain he unleashed in my head was much worse.

This was the pain that knifed and struck – that consumed my life. A pain that would haunt me again and again, long after my stomach was empty. Pain that left me curled up in the fetal position, holding my head. Pain that kept me from sleeping for days and would not subside.

My son was a young child during the worst years. OxyContin pills and Fentanyl patches made me function at all. Without these medications, I could barely leave my bed – have a family dinner, see my son in his kindergarten play, sit up straight and have a conversation with my husband, Jay.

I was one of the millions of Americans who needed high doses of long term opioids unscrupulous pharmaceutical companies lied and encouraged doctors to over-prescribe OxyContin, and “pill mills” distributed these addictive medications far and wide, and while Fentanyl was produced illegally it found its way into street drugs as heroin. More than 932,000 Americans have died opioid overdoses since 1999. This is a tragedy.

The author and her son in 2003. “This is shortly before I got diagnosed with sarcoidosis,” she writes.

Courtesy of Rebecca Stanfel

In response, in 2016, the Centers for Disease Control (CDC) issued guidelines that recommend maximum generic doses for each patient, regardless of their illness or tolerance to the medications. Recently, the CDC There is a walk back some of those guidelines, but the Drug Enforcement Agency Physicians continue to prosecute They believe that prescriptions are too narcotic. Here in Montana, many doctors have lost their jobs and/or medical licenses for “overprescribing” painful patients, including those with terminal cancer.

Meanwhile, some state legislatures have set their own restrictions on opioid prescriptions. In Ohio, for example, a doctor is only allowed to prescribe seven days of narcotic pain medicine, whether it’s for a double mastectomy or wisdom teeth pulled. All these changes have meant that it is harder for pain patients to find doctors willing to treat them and prescribe opioids.

While all this was happening, I was living with pain that I could not bear. I didn’t need these pills or patches. I was a former national class athlete. I prided myself on being tough and not complaining – even during the five years I received high-dose chemotherapy every other week to treat my underlying disease, and even when I had to crawl on my hands and knees downstairs to have a family dinner.

But no single fighting spirit could keep me alive for the many years I lived day by day with silent ordnance exploding in my head. I couldn’t work, think, drive, sleep or move.

I was fortunate to have health insurance that allowed me to see an out-of-state doctor who specialized in my disease. It was this doctor (and then two specialists after him) who recommended OxyContin for the inflammation in my cranial nerves that was causing my unrelenting pain.

The author in the hospital with her son in 2011.
The author in the hospital with her son in 2011. “The neurosis would sometimes get out of control, I had to go to the hospital, sometimes for two or three months at a time,” she writes. “There aren’t many photos of me in hospital because these were terrible times. It was very difficult for my son when I went into a place that he was afraid of and hated to go to.”

Courtesy of Rebecca Stanfel

Even though I had a medical team that made my disease their life’s work by advocating on my behalf, it was often the case that prescriptions were filled. Almost every month we had to deal with the insurance company, who would wait until the last possible minute to fill a prescription. Jay spent a lot of Friday just before 5 pm circling and yelling at bureaucrats to approve medication my doctor wanted me to take. (Without insurance, each prescription would cost thousands of dollars that we couldn’t afford.)

Often, the insurance company would send Jay and I to their offices. We would meet with a nurse who would tell me to try relaxation and yoga instead of medication – as if I hadn’t already tried it. Jay and I would say thousands of versions of “I’m in pain, not an addict,” and pull out the letters from doctors confirming this. But every meeting ended without us knowing what would happen next month. Jay even took photos of me “before” narcotics (hospital, in bed, huddled from light and sound) and “after” (baking pumpkin bread with my son in the kitchen).

It never stopped. I also had to make visits to psychiatrists to find out if I was an addict. They said I wasn’t. Still, my doctor got a lot of pressure because of me. I don’t know how many hours he spent on the phone justifying my treatment.

I lived in a constant stew of shame because I needed these medications, and I was afraid that I would lose them and what little life I had managed next to the pain. I raged at how difficult this all was.

The author in 2013 during chemotherapy.
The author in 2013 during chemotherapy. “When nothing else was working (including low-dose chemo every other week) to treat the inflammation in my stomach and cranial nerves, the doctors tried high-dose Cytoxan (a chemotherapy also used for breast cancer) for months,” she writes. “I included this photo because I was able to sit for a meal at the kitchen table thanks to some pain relief. I still felt like complete crap, but it was important for me to show up for my family as much as possible.”

Courtesy of Rebecca Stanfel

Three years ago, I recovered. My doctors are not sure why the sarcoidosis stopped attacking my nervous system. The disease is now more active in my heart, causing potentially fatal arrhythmias, but I have a defibrillator to regulate these. Without the rampant inflammation in my brain stem and cranial nerves, I am in much less pain. Under a doctor’s guidance, I was able to taper off the pills and patches that once made my life manageable. But the disease could return to my brain – or any other organ system – and once again I would need pain management.

What if I still needed them – especially at my higher doses? What if my sarcoidosis has not progressed from attacking my brain to damaging my heart? I know legitimate pain patients whose doctors felt they had no choice but to cut their narcotics by 75% or more overnight, or drop them entirely as patients.

I can imagine the violence this withdrawal would create. Even with a slow and supervised taper, I dealt with minor withdrawal symptoms with each drop in dose – diarrhea, anxiety, rebound pain, runny nose and insomnia.

I can also imagine the violence of the pain returning – unrestrained and without end.

Since I like to think of myself as tough, it’s hard for me to admit that I’m not sure I could survive without opioids. But it is true. How many years could I stay asleep, with pain taking over my life? How long until I needed to stop it, or choose to stop it? These are not things to say in polite company.

If the strategies we are pursuing would save lives and prevent overdoses, it would make sense for chronic pain patients. But no. even though opioid prescriptions have fallen to 1993 levels, overdose deaths from heroin and illegally produced Fentanyl continue. ​​​​​​​​​​​​​Studies that parse CDC data “There is no evidence of a correlation between the number of opioids prescribed and the nonmedical use of opioids or opioid addiction.”

In other words, overdose deaths from illicitly manufactured synthetic opioids like Fentanyl are now unaddressed making life a living hell for pain patients.

The author cross-country skiing with her husband Jay, in January 2023. “I was able to start cross-country skiing again, after my health started to improve in 2019,” she writes.  “I never dreamed I'd be back on skis.  I didn't want to be on all these narcotics.  When I felt better, I got off the drugs and I was claiming as many pieces of myself as I can, even though I still have health issues to deal with and deal with.”
The author cross-country skiing with her husband Jay, in January 2023. “I was able to start cross-country skiing again, after my health started to improve in 2019,” she writes. “I never dreamed I’d be back on skis. I didn’t want to be on all these narcotics. When I felt better, I got off the drugs and I was claiming as many pieces of myself as I can, even though I still have health issues to deal with and deal with.”

Courtesy of Rebecca Stanfel

It is easy to put hard caps on paper about how many pills a doctor can prescribe. Addressing the constellation of issues that lead people to buy and use narcotics illegally is much more difficult. There is not necessarily a connection between the two, but we continue to behave as they were.

Think of all the people who need pain medicine – those with chronic and incurable diseases, those with cancer or ALS (or diseases like me that you’ve never heard of), and veterans with chronic health problems. It seems as criminal to under-order these people, as it was to over-order.

I hope that my health continues to be good, and that I can continue to live without opioids. But my specialist told me it wasn’t an issue two I will have another neurological flare but When. How will I survive when that happens? What do I do?

I do not know. And that is scary.

Rebecca Stanfel is a freelance writer living in Helena, Montana.

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