Revelations II- A Leap of Faith

Prior to our beach vacation, I was a wreck. Ever since being diagnosed with Fibromyalgia earlier in the year, I was increasingly depressed. It felt like pain was going to be the shadow I couldn’t escape. My candle of hope for recovery had been extinguished. I’d take an extra pain pill here and there mixed with muscle relaxants just to fall asleep and escape the reality I found so dark. I began to contemplate suicide, certainly having the means to do so with the drugs in my possession. All I sought was peace. I wanted to fall asleep and never feel pain again. After nineteen years, I’d had enough. 

Little did I know at the time that fibromyalgia pain isn’t touched by narcotics, so my efforts to overmedicate in search of relief were futile. By August, all I could think about was death. My life was so far away from anything I had ever imagined. Time was passing me by while the drugs stole my senses. I was there, but not there, and I felt trapped in a life of nothingness. It was the promise of a week by the ocean that kept me going, never dreaming what I would discover there.

Doctors are always telling me how miraculous it is that I've survived all I have, and I've always maintained a reverence for the life God has granted me. Throughout my nineteen years of chronic pain and illness, I always held out hope that someday, things would be better. Every crisis only strengthened my faith. My suicidal thoughts weren't only foreign, but they wrapped me in shame. For months, I kept my dark feelings to myself, not even confiding in my best friend/roommate/mom that has been with me through every stumble, every fall. Having been present at my uncle's suicide and been immersed in its aftermath, I knew the pain that it caused. The fact that I found myself with the same thoughts made me feel weak, but they enveloped me nonetheless. If not for the thought of what would remain, the guilt, sorrow, anger and heartbreak of those who loved me, I don't believe I'd be here to write this. The love that surrounded me from family and friends alike is what saved me from being a statistic.

The entire way home from the beach, I couldn’t stop thinking of how magically alive I had felt on our vacation. I kept thinking of the ME I had seen and been on the beach. I longed for her almost as much as I long for my dead son. I was determined to get her back.  My talk of detoxing had fallen on happy, but realistic ears. It was thought that withdrawal was something I may undertake in the next few months. However, as soon as we returned home, all the same stress, the same depression, the same despair was waiting for me, and I just knew it was time to take that leap of faith. It would mean a return of the nerve damage pain and my generalized abdominal pain from numerous surgeries. I would have to learn to function despite it. But anything seemed an improvement from the isolated, anesthetized cage in which I found myself, so far away from ME. Pain seemed a reasonable exchange for an active, engaging life.  I was going to start over at 42, but Jessica would be guiding the way rather than the drugs, and that sounded like heaven.

Getting off my narcotics was a lofty goal, to say the least. At the time, I was on a 50mcg Duragesic Patch, which is placed on the skin and a steady dose of Fentanyl is administered over 72 hours. According to the CDC, Fentanyl is 50 times more potent than heroin and 100 times more potent than Morphine. I felt like I had a bomb strapped to my chest with the Duragesic Patch. I’d had a patch fall off once without knowing, and I went into a nasty withdrawal and was hospitalized for a week. My body had become so dependent on the substance that it went haywire in its absence.  In addition, I was prescribed 120mg of oxycodone for breakthrough pain. From mid-July 2018 through our vacation, I had managed to ween myself down to 60 mg/day of oxycodone, but that was still a decent dose. Both were powerful drugs, and I was their prisoner. Until now….

Two days after we returned home, I had an appointment with my pain doctor. I had been weening slowly off my patch for over a year under his careful instruction. For instance, a year ago I was on 150mcg of Fentanyl, and in September 2018, I was on just 50mcg. I was definitely headed toward getting off the narcotics, but it was slow, and for a reason. My doctor was trying to take me down dose by dose in a slow, controlled way to allow my body to acclimate to each reduction. I had a much different idea as I sat across from a man I respect more than I can say.

Bursting into tears, I told him the story of my beach experiences, explained my suicidal thoughts and the numb darkness in which I found myself. I told him I had made a decision to stop my narcotics, despite the pain. He smiled and said that he was proud of me, and he believed I had the heart and courage to undertake this challenge.  He was encouraging until I told him I wanted to rip off my 50mcg Fentanyl patch and go cold turkey off one of the most powerful drugs on the market. I told him he could rip it off, or I could rip it off at home myself, but it was coming off that day. To give some perspective, most doctors would have their patients go down in increments of ten mcg until they got down to 5 mcg and then stop, which would take about a year. I didn’t have the patience to step down that way. It was all or nothing.

It had been mid-July when I truly realized what the drugs were doing. I remember lying in my bed crying, trying desperately to process my sadness for all I had been through, and my fear for what awaited me in the future. No matter how much I focused, I could not cope with my overwhelming emotions. My mind was too numb to see the forest for the trees. No matter what the cause, when you find yourself too numb to deal with reality, it is time for a change. For weeks, I had felt the drugs coursing through me. It was like ants crawling through my veins and through my mind, and I was going crazy feeling the poison I was ingesting as prescribed. I asked the doctor if he could recommend a rehab facility where I could be monitored during my detox.

He said that, unfortunately, there were no rehab facilities for my type of problem. I was diagnosed as being drug dependent, not drug addicted. Even with my occasional taking of extra pills to try to escape the pain, I only became dependent on narcotics because of that pain. That’s why he prescribed them. I had been ill for a very long time.

In shock, I asked if some exception could be made, but my doctor said insurance wouldn’t pay for a drug dependent patient. It felt like I was being punished for being on narcotics for a legitimate reason. That is part of the problem with our system. There is help for alcoholics and individuals whose drug use is due to addiction, but not reasonably accessible help for those of us who find ourselves in the midst of a crisis, left to choose between our pain and remaining stuck in a drug-ruled world or narcotic freedom. While there are a few programs, for example through the Mayo Clinic, that treat this type of dependency, they are oftentimes cost and distance prohibitive, as they were in my case. My physician did not even mention it to me as an option during our discussion about options for detox.

The national opioid crisis certainly encompasses plenty of addicts, many of whom become such after being legitimately prescribed a narcotic after surgery or after a painful injury, and when their scripts ran out, they find themselves unable to stop, and so they seek narcotics elsewhere. However, there are just as many of us who became dependent after years and years of illness, our bodies unable to come off the drugs without experiencing horrible symptoms. Why there is a difference between the two when it comes to the majority of rehab facilities is one of the major issues facing the epidemic. While the focus of rehab may be extremely different for addicts vs. dependents, there should still be help for both. I was not able to find any local facilities that took my insurance, nor that treated drug dependency. Cost and distance were important factors for me. As far as all my personal research went, my pain doctor had been correct.

Discouraged but adamant, I told the doctor again that I intended to rip off my Fentanyl patch THAT day.  Forced to deal with my decision, he said that the only way to manage the lack of Fentanyl in my body would be to raise me back up to my full dose of oxycodone at 120 mg/day. I would be on the full dose for 4-6 weeks, depending on the severity of my Fentantyl withdrawal. While some withdrawal may only take a few weeks for some, it can take from several weeks or even months for the drug to truly leave the system for others, especially those who have been on the drug for an extensive period of time (like me, going on 15 years.) Physically, it can mean an increased sensitivity to pain, but the psychological symptoms, such as insomnia, anxiety, irritability, depression and craving, could last up to years. This is called post-acute withdrawal syndrome.

I was extremely discouraged knowing I would have to go back up on the full 120 mg/day dose of oxycodone after getting down to 60 mg/day, but anything was worth getting off the Fentanyl. So my doctor gave me his blessing to take off the patch and made me an appointment four weeks out, when I would likely start my slow withdrawal off the oxycodone.  I returned home in a haze. Was I ready to take this plunge? Could I handle the pain I was promised would return? Other than certain guidelines from my doctor, this was going to be a long, self-driven effort. No monitored, medicated detox for me. 

I think I must have been a bit insane that day, because despite all the warnings, I ripped that damn patch off with pride. No matter the emotional mess in which I found myself, I knew the true Jessica had the strength to pursue this challenge to the end. And so I rested and awaited the onslaught of symptoms to descend. I wouldn’t have to wait long for the hell to commence.

CHECK OUT THE SONG BELOW  BY SARA BAREILLES.  IT FITS..........
https://www.youtube.com/watch?v=53GIADHxVzM&list=PL1poodjKA9Ove93dWCvla4vEeD-9Ne5Dl&index=44

Part 3 of 3 to follow soon....