Desperately Seeking Jessica : December 2018

Sunday, December 30, 2018

Desperately Seeking Jessica : Revelations III- The Way Home

Desperately Seeking Jessica : Revelations III- The Way Home:

Had I thought my World dark and isolated before I ripped off my patch, it was proven to me that things CAN ALWAYS get worse. Over the first 48 hours, I was thrust into a tornado of doubt, anxiety, fear and hopelessness. My suicidal ideation became more potent than ever, and I downward spiraled into the brink of madness. For two days, I made an effort to notify all my doctors of my choice to detox, but I quickly lost the ability to communicate with dissolving into tears. The patch had come off on a Tuesday, and by Thursday I was a crumpled mess. I’d left an emergency message for my rheumatologist, and he called me back just after 5pm. With everything I had, I tried to communicate my situation without crying, but the empathy and concern in his voice had me in tears within moments. Our conversation remains vague in my memory, but after blubbering about the dark emotions I was having, I remember him saying these words.

"Okay, Jessica. I understand what is going on. I want you to put down the phone, get your mom and have her take you to the ER so you can be admitted to Harding. You need to be someplace where others can take care of you
24/7; someplace you can rest and be safe."

I hung up, still sobbing, and called my mom. She was at a property over an hour away. Leaving immediately, she told me to get ready. Taking my time to prepare, I took a leisurely shower and packed a small bag. Before I was dressed, my mom called me from the driveway. It had barely been 40 minutes. Anyone who doesn't believe that moms are angels on Earth obviously hasn't met mine, because that woman FLEW home. She kept me calm as we drove to OSU and stayed with me while I waited for a bed.

Under different circumstances, I would’ve been scared to go to Harding. I had always seen it as a place for truly unstable people. People who needed help getting a mental disease under control, or people who needed constant supervision for their own safety. I never imagined being one of THOSE people, but I was. Nor did I think I was going to share this part of my journey in my blog. I felt ashamed and weak that I required that type of care. But with the help of a dear friend, I was convinced that ALL of us are one of THOSE people in some way, shape or form at some point in our lives. I'm not saying we all end up in psychiatric hospitals, but I'm saying we're all human who feel weakness and vulnerability at some time. I needed help, and I got it.

Harding wasn't able to assist with detox, as it’s not a rehab facility. They kept me on my oxycodone as the pain doctor had prescribed. I did meet with doctors every day, and they adjusted my antidepressants to try to handle my intense depression and anxiety that seemed to grow with every moment. I suffer from both conditions, but Fentanyl withdrawal, especially going off cold turkey, is known for exacerbating these symptoms, as well as causing confusion, abdominal pain, sweats, muscle aches, loss of appetite, tremors, to name just a few. I was monitored constantly, and I was surrounded by people who all needed help in different ways. The camaraderie of need was a constant comfort in a time when my spirit was plummeting. After a week, I was stable enough to go home, but I hesitate to even use the word, because it was far from what I was.

There is a scene in the Twilight movie, Breaking Dawn, Part I, where Bella, the main character, turns into a vampire. After being injected with venom, it shows her writhing in pain, her blood drying up and her head shaking violently inside itself as she screams silently. That's pretty muchwhat I felt like for the first four weeks, accompanied by emotional outbursts, constant anxiety and an inability to function. Suicide was still an option that entered my mind. I needed someone so badly, to be with me and prevent me from feeling so horribly alone. As if by fate, my mom finally had enough of driving 4-5 hours a day and working for a company that ruled their management with iron fists, and she left her job. So for some of the hardest weeks of my withdrawal, my mom was home, nurturing me. If ever there was a time I wished to return to the womb, it was then.

It took another two weeks before I felt stable enough to begin the second stage of my withdrawal. Starting on 120mg/day of oxycodone, it felt like I had a very long road ahead of me. And I did. Those first few reductions had my system in a flux. While my physical symptoms weren't as taxing, my mental state was declining. I would sit and stare and not speak, and when I WOULD speak, it would come out in violent bursts. I would sob in my mother's lap, and she would just soothe me with the bond I've known with her my whole life. Had we collected my tears, I'm sure God could have used them for a rain storm. There seemed to be no end to my sadness. Memories of all I'd been through these past 19 years played like picture films in my mind, and suddenly I felt what I can only describe as mourning for THAT girl.

When I was going through the pancreatitis, the H1N1, the loss of my son, the sepsis, the colostomy, to state just a few, I was just surviving. I wasn't coping with the sadness, disappointment or loneliness I felt. I was just too numb. Now that I was waking back up as the chemicals left my system, I had to deal with reality and all those ghost years. It overwhelmed my senses, and I felt certain I was on a one-way path to a nervous breakdown.

When I got to 80 mg, my pain nurse practitioner saw me and was concerned with my mental state. She advised me to slow down on the withdrawal, to reduce my dose by 10mg every ten days instead of every seven, and to set my end date for January 14th instead of Christmas, as I had originally intended. My stubbornness was overpowered by my emotional instability, and I agreed. Even at 10 days per 10mg, it still wasn't long enough for my body to truly adjust to the current dose. I was warned that the lower I got, the sicker I would feel. Now on 20mg/day, I'm finding that to be very true.

It feels like there is a revolution going on within my body. The harder I try to expel these chemicals, the harder the drugs grip onto my cells, fighting to hold onto the power they’ve had over me for so long. As I cope with the body aches, shaking, sweats, exhaustion and pain, I feel like the drugs are trying to reduce me to ash as they take over once and for all. There are days I have no strength to fight against them. But other days, I pull myself out of my agony and do SOMETHING to enjoy life and show this drug who is boss. This isn’t a war I’m willing to lose.

I'm still coping and mourning, and with therapy, I will process my past. I've gotten close enough to my end point that I’m rejoicing in the strength it took me to get here, the strength God graced me with to survive it, and the support of family and close friends that lifted me up when I was crumbling. In the ongoing absence of the narcotics, I’ve felt a surge of unconditional love, healing me as much as I've been healing myself. I envision that girl on the beach, and it's as though I'm running towards her like an old love. And that's what she is to me, an old love for myself, a girl that still has fire in her eyes who will merge with the woman I have become.

Life is no longer black and white but in vibrant color! I no longer have to search for my words, but rather they come pouring out of me, unjumbled and clear. I've found true laughter again, and my heart and mind swell like the tide with feelings long absent. I see a future of helping others rather than death, a time of physical rehabilitation and the returning to work, hopefully lobbying against big pharma or being a patient advocate. The possibilities are endless!

January 14th, I am truly starting over. The World has changed so much in 19 years, but I recognize that travel bug I used to know returning, making me want to go out and explore it. I'm ready to live life, not just survive it. It's been a humbling experience, this decision to take the plunge out of my pool of numbness and back into a life. Some of my pain has already re-emerged, but instead of wanting to take it away, I almost find it a reminder that I'm actually alive. I haven't felt truly alive for almost two decades. I am welcomed back by two sets of footprints merging into one, showing
me the way home.

Check out the song below by Edwina Hayes...
https://youtu.be/eumh8_ZZZo0

Revelations III- The Way Home

Under different circumstances, I would’ve been scared to go to Harding. I had always seen it as a place for truly unstable people. People who needed help getting a mental disease under control, or people who needed constant supervision for their own safety. I never imagined being one of THOSE people, but I was. Nor did I think I was going to share this part of my journey in my blog. I felt ashamed and weak that I required that type of care. But with the help of a dear friend, I was convinced that ALL of us are one of THOSE people in some way, shape or form at some point in our lives. I'm not saying we all end up in psychiatric hospitals, but I'm saying we're all humans who feel weakness and vulnerability at some time. I needed help, and I got it.

There is a scene in the Twilight movie, Breaking Dawn, Part I, where Bella, the main character, turns into a vampire. After being injected with venom, it shows her writhing in pain, her blood drying up and her head shaking violently inside itself as she screams silently. That's pretty much what I felt like for the first four weeks, accompanied by emotional outbursts, constant anxiety and a general inability to function. Suicide was still an option that entered my mind.

I needed someone so badly, to be with me and prevent me from feeling so horribly alone. As if by fate, my mom finally had enough of driving 4-5 hours a day and working for a company that ruled their management with iron fists, and she left her job. So for some of the hardest weeks of my withdrawal, my mom was home, nurturing me. If ever there was a time I wished to return to the womb, it was then.

It took another two weeks before I felt stable enough to begin the second stage of my withdrawal. Starting on 120mg/day of oxycodone, it felt like I had a very long road ahead of me. And I did. Those first few reductions had my system in a flux. While my physical symptoms weren't as taxing, my mental state was declining. I would sit and stare and not speak, and when I WOULD speak, it would come out in violent bursts. I would sob in my mother's lap, and she would just soothe me with the bond I've known with her my whole life.

Had we collected my tears, I'm sure God could have used them for a rain storm. There seemed to be no end to my sadness. Memories of all I'd been through these past 19 years played like picture films in my mind, and suddenly I felt what I can only describe as mourning for THAT girl.

I'm still coping and mourning, and with therapy, I will process my past. I've gotten close enough to my end point that I’m rejoicing in the strength it took me to get here, the strength God graced me with to survive it, and the support of family and close friends that lifted me up when I was crumbling.

In the ongoing absence of the narcotics, I’ve felt a surge of unconditional love, healing me as much as I've been healing myself. I envision that girl on the beach, and it's as though I'm running towards her like an old love. And that's what she is to me, an old love for myself, a girl that still has fire in her eyes who will merge with the woman I have become.

CHECK OUT THE SONG BY EDWINA HAYES BELOW! IT PRETTY MUCH SUMS IT UP!https://www.youtube.com/watch?v=eumh8_ZZZo0&index=14&list=PL1poodjKA9Ove93dWCvla4vEeD-9Ne5Dl

Monday, December 17, 2018

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....

Thursday, December 13, 2018

Revelations

As if I had wings, I dove off the numbness and fell into the fires of a World unknown and unpredictable, a passage I had to survive for any hopes of recovery. For me it’s much like the pot of gold at the end of a very tumultuous and grueling rainbow. The past few months, my body has been experiencing a fierce revolution, my cells clinging to the very poison that made the last nineteen years of chronic pain and illness tolerable. I started slowly decreasing the amount of the contamination that had not only affected my entire body, but had also seeped into my mind and spirit. There is no part of my life that has gone untouched, not one moment of nineteen years absent from their influence. Deciding to get off my narcotics was not easy; it began more as an epiphany.

Topsail Beach, September 1-8: My mother, a friend and I were staying in a condo right on the beach. With everything on the island on stilts, I rarely made the long decent down to the beach. I would just hang out on the deck and enjoy the view. This year, a surprising thing happened. I went down to the beach every day, and I even had the strength in my lungs to climb the steep stairs back up to the condo. Instead of being afraid of what I might encounter in the ocean, I dove in, allowing the swells to knock into my back and splash over my head, relishing the taste of salt in my mouth and the sting of it in my eyes. I boogie boarded, riding the waves from their highest swells until I felt the crunch of broken shells under my belly. I walked the beach alone, leaving more footprints than I had in the last nineteen years.

There was a presence with me the whole time, almost a long-removed shadow. She was my courage, my sense of adventure, my hope. She was ME, nineteen years ago before the chronic pain and illness led me to a life of near-absolute numbness from the narcotics I was kept on by reputable doctors for real pain. Unfortunately, I lost that ME over the course of all the hospitalizations, all the surgeries, all the pain, and especially all the drugs. Seeing that glimpse of her gave me an idea, and ultimately the determination and courage to carry it through.

I burst into the condo one afternoon and made a declaration to my mom and dear friend.

“I saw Jessica, and I want her back. I’m going to get off my narcotics and hopefully she’ll return, only with the wisdom of the last 19 years.”

To be continued....