10 Years After My War on Drugs

This April, I published a long-form essay on Odyssey in three parts describing “My War on Drugs.” Today marks ten years from the inciting incident as described in this essay. For the first time, please take the opportunity to read this long-form essay about my recovery from prescription opioid dependence in one piece.

My War on Drugs

My toes dug into the well-padded forest green carpet that extended the length of the bathroom as I reached with shaking hands towards the towel rack to pull my purple bath sheet down to cover my nakedness.

My legs spasmed out. I pulled them tight into myself in a fetal position trying without success to control the jerking.

The next spasm nearly kneed me in my naked chest. My undergarments had been discarded at the base of the toilet when my stomach began to spasm uncontrollably.

I was one colossal spasm. I cried.

I prayed for it to stop.  

Pain previously unimaginable seemed to take over my body. Struggling to contain my shivering, I closed my eyes and prayed once again that the pain in my lower abdomen would stop. Once the spasms slowed, I crawled the short distance from the master bathroom of the single-wide trailer into my bed where I continued to shiver and shake.

It was August 2009. I was experiencing the results of physical dependence on an opioid medication that had become unavailable to me after my physician discharged me without notice. I was experiencing what I had feared for more than seven years: I was in withdrawal.

Seven years before, in late autumn 2002, I visited my family doctor for continuing pelvic pain six months after my third bladder surgery. My urologist had discharged me with a mysterious malady by the name of “interstitial cystitis” as a diagnosis but no one seemed to know exactly what that was.

My family doctor had been prescribing a large number of generic Vicodin every month in an attempt to control my continuing pelvic pain. They didn’t help my IBS. My irritable bowel didn’t make my bladder happy either. The sleep that the combination of opioids, antidepressants, anti-anxiety medication brought was fitful and I was waking several times a night not only to use the bathroom (another symptom of the interstitial cystitis) but also to take pain medication.

After months of very little sleep, I went to see my doctor. She suggested a pain medication I wouldn’t have to consciously take continually. My family doctor assured me of minimal side-effects. I had no idea then my body was beginning a seven-year dependence on the most powerful opioid prescribed. That medication was Duragesic, a brand name of fentanyl.

I wanted relief from pain, but even with the patch I changed every three days it was necessary to take Vicodin as a “breakthrough pain” medication. Breakthrough pain means that extreme discomfort that is felt even when using a medication for a chronic or somewhat ‘stable’ level of pain. When Vicodin damaged my inner ears, I was changed to Percocet.

With each increase in dosage, I became more frustrated and more irritable.  My mood changes necessitated the addition of antidepressants. Then anti-anxiety medications and additional antidepressants were prescribed to assist with sleep. In 2008, when my daughter graduated from high school, I was taking 19 different prescribed pills and one patch every day. Most of the pills were for the side-effects of the patches or other pills.

Most of my life I had wanted to be a doctor. When I was a child, I wanted to be a James Herriott. When I became a mom at 17, then again at 19, I settled on the one medical job I could train for without a waiting list at my local community college: Medical Assistant. Medical research became a hobby when chronic illnesses had hit my oldest son and husband. I respected the medical field, I was comfortable there. I had worked in both of the local hospitals and for a local doctor before life circumstances necessitated me retraining in the computer programming field.  

I worked for the State of Washington as a programmer for seven years before the pain in my lower abdomen became the focus of my existence. My life had been reduced to living in my bed and in the bathroom. I stared at a television playing reruns of shows I used to enjoy, now checked out by the season from the library. A sad nostalgia I shared with the shows. I prayed daily for it to end. Then a friend asked me if I had ever tried ‘pot’ for my pain.

I responded I didn’t believe in medical marijuana. “They’re just using it as an excuse to get high. Not that I don’t think cancer patients should get high as much as they want.” I joked, not having a clue how misinformed I was.

My friend frankly pointed out I had already lost what I had previously thought of as a life. I had become disabled from the brain changes the fentanyl caused. I was angry all the time. I yelled at my teenagers and husband in my frustration as my teenage son took over dinner preparation. I lived in bed. I had no more life left.

In the summer of 2007, I sat on the table in the exam room in my urologist’s office. The paper was crinkling under the gown that covered my butt as I looked in a daze across a small blue clinic room at my urologist. I listened as she informed me I wasn’t a good candidate for a pain management program. Then she went on to say she didn’t feel I would ever be able to manage my pain without morphine-level pain relievers. Since I was allergic to morphine, the fentanyl patches were her preference over the long-acting oxycontin pills also available.

Her words took a few months to sink in. At my next visit with her, I requested a copy of my records be sent to a clinic that specialized in medical cannabis. I was nervous and averted my eyes to the powder blue wall when I asked.

When she answered I looked back at her in shock, “I don’t think it would do any harm.” My urologist did not feel the side-effects of cannabis would be any worse than those of the medications I was already using.

In 2008, after my last bird flew the nest and she was safely situated in a dorm room at her university, I became a legal medical marijuana patient. I had found that a few puffs off of a pipe filled with the pungent herb called cannabis was more helpful for more than just the nausea that caused me to try it. It helped my pain level more than any of the pills I had been given. I was not alone.

In the second edition of his book, Cannabis Pharmacy: The Practical Guide to Medical Marijuana, Michael Backes explains, “Cannabinoids can relieve pain through a variety of mechanisms, including producing analgesic and anti-inflammatory effects, through the modulation of neurotransmitter release, and by stimulating the release of the body’s own natural opioids.” Using cannabis, my body was helping to relieve the pain itself.

For the first years I used cannabis, I smoked it. I was shocked at the amount of pain relief I felt as well as the feeling of well-being. There were times when I did feel the euphoria everyone seems so scared of, but it wasn’t like the angry, mean, high I had from the narcotics when I started them. Just like the opiates, as my body became accustomed to the cannabis, the euphoria left. What stayed was decreased inflammation and increased analgesic properties as well as a change in my moods for the better.

One year after I became a medical cannabis patient, in August of 2009, my pain was manageable with the prescribed medications and the herbal addition. As Backes describes in Cannabis Pharmacy, “THC was found to both displace opioids from the receptor to which they bind, while also allowing for reductions in the dose of opioids necessary to treat high levels of pain.”  This could have contributed to my pain being able to stay under control while maintaining the same dose of the fentanyl and Percocet from 2007-2009.

A few days before the withdrawals began, I had driven to my Urologist’s office in Tacoma. It was the same route I’d driven between Olympia and Tacoma every month for the previous six years. Every trip reminding me of the legalities of these strong pain medications: They couldn’t be called in or mailed. I had to pick them up each and every month. The ironic part was I probably shouldn’t have been driving on fentanyl.

I pulled the Town Car into the tiny parking lot next to St. Joseph’s hospital nose first, knowing even to back it out when I was leaving would be delicate, but I was tired and wanted to get back home. The heat of late August seemed to sap the energy right out of me, and I slowly shuffled to the elevator and pushed the circular button indicating “2.”

As I opened the door, the fountain on the wall made me laugh. How would any office decorator believe it was a good thing to have the sound of running water in an office where people who can’t control their urinating? In what world does that make sense? It seemed cruel. I dismissed my mental rantings and proceeded ahead to the desk.

“Hi, I’m here to pick up my prescriptions.”

The young blonde receptionist who I was used to greeting me with polite smiles and friendly words looked towards me in disbelief. She turned from her seat at the front portion of the wrap-around desk, leaned into me and spoke in quiet words, “You didn’t get the letter?”

I replied in confusion, “What letter?”

“I’ll print a copy for you. You’ve been discharged. You are no longer a patient here.”

The words rang in my head. My hands began to shake. How does something like this happen?! What would I do now?

My family doctor had changed practices and was no longer accepting patients with Medicare. The clinic where she worked wouldn’t take me back as a patient because I was a chronic pain patient. I had no primary care doctor and now my specialist who had been prescribing my medications for over five years had discharged me. I was on the last day of my final three-day patch. I was a chronic pain patient without a doctor.

Since 2002, for seven years, I had been using the opioid patch to keep my pain at bay, but I had occasionally experienced bad patches. One out of every twenty to thirty of the patches would malfunction causing me to experience the symptoms of withdrawals. The idea of going through them “cold turkey” filled me with fear. I started shaking, and I felt my face and ears turn red as tears welled up in my eyes and my chin quivered.

Experience taught me not to take it out on the front office staff, so as I started to get upset, I walked out the door. They could mail the letter. My own experience working in the medical profession had taught me it was not their fault, whatever had happened.

The next weeks were filled with cramping and spasming. In 2009 there were no dispensaries in Washington. I had no idea how to obtain the herbal medication that could eliminate the pain and the withdrawal symptoms that had me alternating living on the toilet and in a fetal position for days and nights seemingly without end. Eventually, I was able to make a connection and with the first shaky inhale, the spasms began to calm. My anxiety about the withdrawals eventually settled. After a few months I was happy to be free of the opioid crutch that had been my nemesis for almost a decade.

Early in 2010 I learned to infuse butter with cannabis. When I ate the herbal medication, I found much longer-lasting relief from my pain as well as the spasms that remained in my legs and lower abdomen. In his book, Backes mentions, “Swallowing cannabis preparations containing THC increases the length of time they are effective for analgesia and for sleep, and increase their perceived potency” 247. I also noticed the nightmares from my PTSD had ceased. This was a relief from a different type of pain. A different type of side-effect as well. Instead of taking 19 pills for the side-effects of a patch, a year later I was experiencing relief of multiple symptoms and disorders while using cannabis to treat my pain.

In the intervening years, I’ve been shocked at every mention of Fentanyl in the news. The deaths of Prince and Tom Petty broke my heart as a music lover. As a person who lost seven years of her life to fentanyl, I know their murder weapon intimately. As a cannabis advocate, I wished Tom had “Rolled Another Joint” instead.

Going Public With a Mental Illness

I’ve been writing for Odyssey now since February. Although it may have seemed like an odd time to take on a new obligation, writing articles for a larger audience as well as being able to promote some that I had written and published here or in other blogs has been a distraction from medical frustrations and lack of answers. It’s been fun.

This week I chose to share something that I wrote about one of the challenges I face every minute of every day: Dissociative Identity Disorder. During my childhood people called it “Multiple Personality Disorder,” but no one knew I had it.

Here’s the article on Odyssey:

Time-Sharing A Body

My life with polyfragmented dissociative identity disorder

For most of my life, I have experienced episodes of time loss and what my family and friends termed as “moody” behavior. I was diagnosed with Major Depressive Disorder, Post-Traumatic Stress Disorder, Generalized Anxiety Disorder, and Attention Deficit Disorder. Then they began adding other diagnoses: Bipolar Affective Disorder, rapid cycling type was one that just did not react to the medication because I didn’t have that disorder. This went on for decades.

I was almost 50 when I found a psychologist who specialized in dissociation and they tested me. There was no doubt. I didn’t just have any “dissociative disorder,” I had Dissociative Identity Disorder (DID), a mental injury (caused by complex PTSD) that had previously been referred to as “Multiple Personality Disorder” or MPD.

While researching this disorder, I came across this quote, “DID is arguably one of the most misunderstood and controversial diagnoses in the current Diagnostic and Statistical Manual of Mental Disorders (DSM). But it is a real and debilitating disorder that makes it difficult for people to function.” Oh how we agree with that statement!!! Although previously thought to be a rare disorder, it has been found that 1 to 3 percent of the general population actually meet the criteria for a diagnosis of DID, making it just as common as bipolar disorder or schizophrenia. Also, not all personalities are obvious changes, it isn’t like the movies or TV shows that have been produced about multiples. (Click here to read the rest on Odyssey)

Next week watch Odyssey for an article about what herb can CURE addictions!

Thank you for your interest in my writing! Have a wonderful day full of Love and Lighte!

KODAK Digital Still Camera

I Have Her Name

Margaret Ellen Savage was born in a little town called Entwistle, outside of Edmonton, in Alberta Canada on May 11, 1919, one hundred years ago Saturday. She was my maternal grandmother, my mom’s mom. Although both of my grandmothers names are “Margaret,” my mom named me after her mother, giving me both her first and middle names.

Adult woman with white hair and a bandage over her eye standing next to a young girl in front of a beach
Grandma and me after she had a cataract surgery, standing in her front yard in Union on Hood Canal

My grandma, who I simply called, “Grandma,” but whom everyone else called by her middle name, “Ellen,” was my confidant when I was a growing girl. It was with her that I saw my first music video on a late-night television show after Grandpa went to bed. I told her my secrets, she listened to my hopes and my dreams and fears.

When I was a young parent, still living with my mother and my infant and toddler sons, my grandparents moved into Olympia from Union, a tiny community on Hood Canal where they had lived throughout my entire life. I missed the front yard ready to swim in every summer, but I enjoyed having my grandparents closer. When they moved into a house only a block away, I thought we had forever.

Life moved on and I would announce my upcoming marriage to my grandparents while helping them move on Easter into another house a few doors down from my mother. I had moved my boys into an apartment with my fiance, no longer walking distance from my grandma.

Playing games one Christmas

I was her first grandchild, it was a special feeling. As a grandma now, I understand a bit differently. Each grandchild has a special and different relationship with their grandparent. I remember Grandma as my best friend. I had her to myself for three and a half years before my cousin and then a few weeks later, my brother, were born. I was no longer her only grandchild.

She never stopped making me feel special. She still hasn’t. When my mother and I visited my grandma’s birthplace in Alberta, Canada, in August last year, I felt closer to Grandma than I have in years.

Grandma passed away when my daughter was only three. It was April 1993. Her last words to my grandfather were indicating the pain that overwhelmed her body with the lung cancer that took her quickly after a Thanksgiving diagnosis the previous year.

This wasn’t the first instance of that particular disease in her family, her brother who had inhaled years of second-hand smoke while serving in government, Charles Savage, had passed several years earlier also from lung cancer.

I’m thankful Grandma’s passing was fairly quick after her diagnosis, but it didn’t minimize the affect her loss had on the family that she had acted as a strong matriarch of. We missed her. We still do.

Margaret “Ellen” Savage Rebman
May 11, 1919 – April 23, 1993

I felt her spirit join with myself and my mom many times in our journey last year to Alberta. I feel her near right now. I know that Grandma watches me and I hope that she is okay with me sharing this. She never called a lot of attention to herself, but I always felt she should. She was an amazing woman.

Happy 100th Birthday, Grandma. Love, your namesake.