A War Cry! Pain Warriors Will Not Be Silenced

I have never been a fan of opioids. For me, the side effects are so horrible that I cannot take most. I believe Tramadol didn't make me sick as the first two I had tried, but I was also prescribed the anti-nausea medication to take along with it after my hip labrum tear surgery.

So, when I was diagnosed with Interstitial Cystitis and then Fibromyalgia, there wasn't even a question in my mind about using them. Like most people in the general public, I have heard the horror stories about people getting addicted and even overdosing from their use. The strict crackdown on prescribing and use of opioids seemed to be a good step for the government to take. However, I had no real understanding of what such a blanket policy would mean for the individual who had been using opioids to manage their pain.

A Review of the film Pain Warriors by Tina Petrova and Eugen Weis

Pain Warriors Film Trailer

The Mission

I was introduced to this new documentary through a friend, Jason Herterich who lives with chronic pain. He is one of the pain warriors featured at the end of the documentary. Tina Petrova, the award-winning filmmaker, is his friend. Petrova has been a pain warrior since 1997, when on an icy, windy mountain road in California, she slide off a cliff, plunging down 6,000 feet.

Petrova (director, producer, writer) and Eugen Weis (editor, director, producer) have spent seven years bringing this poignantly enlightening documentary to fruition. Through a crowd fundraising campaign, this film was supported by pain patients and doctors with the goal of giving visibility to those living with intractable pain so that they may be believed, understood, and have better access to treatment that allows them to live FULLY again. 

The film's mission statement explains, "Pain Warriors tackles the other side of the OPIOID CRISIS ~  that of undertreated pain patients and the slow death of compassion that surrounds them....Both Doctors and patients alike suffer~ when a "one size fits all" political strategy is implemented to end overdose deaths and addiction, without the foresight to what happens on the other side of the equation."  This film opened my eyes and brought them tears as witnessed the pain of the five individuals whose stories are told in such a raw and eloquent manner. 

A Synopsis

Firstly, I want to say that the film is captivating in every way-with impactful cinematography put to the beautiful original score by James Mark Stewart, and the weaving together of the five stories, each different, yet the same.  Each story spoke to the very core of me.  When Karen's husband reads from her journal, "...I understand when someone with severe chronic pain feels so bad that they consider suicide. I do not condemn those people," my heart began to physically ache.  I could not hold back my tears. 

This is an honest look at what living with chronic pain is like, especially when one isn't able to get treatment to bring any relief. Their stories bring light to the millions of people living with chronic pain (According to painwarriorsmovie.com the reported numbers of those living with chronic pain in Canada-7 million, USA- 117million, UK: 10 million, and Australia- 1/5). 

Sherri's Story: The film is dedicated to Sherri Little whose cry for help for her debilitating pain of Fibromyalgia and inability to digest food due to inflammatory bowel disease, severe colitis, and other conditions was shunned by her doctor and then ignored when she made a last-ditch plea with her patient advocate at Cedars-Sinai Medical Center in Los Angeles on July 3, 2015.

Hunter's Story: Little freckled-faced Hunter, 11, and his mom tells his story of surviving cancer after four years of chemo and steroid therapy, he developed chronic pain.  As he explains the chemo is like the Hulk who does good and bad.  As it defeated the cancer within him, it also broke things in his body that caused his chronic pain. His mom states that Hunter, "...feels like he's unheard. He feels like he's unbelieved."

Yanekah's Story: After a car accident at the age of 18, Yanekah faced severe pain over the years that led to mental health issues of depression and anxiety. When she found out she was to be a mother, her anxiety over being able to care for her child and deal with her chronic pain was one she didn't feel she could share out because of the judgment of her as a mom.

Karen's Story: After a car accident, she dealt with many years of chronic pain and severe headaches without any diagnosis.  Finally, after seeing a specialist who she tracked down, she was diagnosed with cerebral spinal leaks. After research, she then found another doctor who would perform repeated surgery to construct patches.  These did not hold.

Dr. Ibsen's Story: After a 30+year career as an emergency room doctor, Mark Ibsen opened his own Urgency Care practice in Helena, Montana.  In 2013, he began to see more and more chronic pain patients who had been taking opioids to manage their symptoms because their own doctors had stopped prescribing them their medication due to the CDC's new policy and fears of a sanction from the medical board if they didn't. Ibsen was one of the last doctors in Montana willing to prescribe opioid pain medication to new patients, including many who drove hundreds of miles to see him. He explains, "People who have been treated for ten years with pain medications shouldn't be suddenly abandoned."

How to Watch this Very Important Film

This week it was released for purchase (see links below). They had hoped to have showings of this film in various venues, but with COVID-19 that effort has been dampened. Also, Tina has been struggling with her own chronic pain, so they are hoping to get the film out to small groups of people for in-home showings. That is why I was able to view the film to do this review (and have since purchased it to own).

This is not a light movie, but it is important that we view it and share it with anyone willing to listen. This is a cry out. There is a growing "epidemic of chronic pain and chronic illness, and it is causing a devastating toll on both individuals and society. By the year 2020, the number of those living with chronic pain is expected to climb to 1 in 3. Without timely education, resources, and treatment, we stand to create an emerging, global health crisis." By watching this film, you are helping to raise awareness that can bring about the needed changes in our health system and in the way we treat those with chronic pain.

Purchase or Rent Video via (live links below):

• Amazon for DVD or Blue-ray 
• Prime Video Rent or Purchase 
• iTunes Rent or Purchase 

One Chronic Pain Doctor who is also a Patient:

Dr. Ginevra Lipton in her article CDC Opioid Guidelines Created an Epidemic of Underrated Chronic Pain explains, "The 2016 CDC guidelines really cemented the medical hysteria around opioids (see the timeline for further exploration) and rapid adoption of their strict opioid dosage ceilings and duration limits has resulted in widespread undertreatment of chronic pain."

She goes on to explain that while research is being done and new breakthroughs seem to be imminent, we can't pull what treatments we have, "...until we have other choices in our pain toolbox, opioids must remain an option, while continuing efforts to minimize their risk of addiction and abuse." In an article published in April of 2019, the CDC has admitted that the guidelines "had (been) used...to justify an 'inflexible application of recommended dosage and duration thresholds and policies that encourage hard limits and abrupt tapering of drug dosages,' when the guidelines did not actually endorse those policies."

 

Ways You Can Help

• Visit Pain News Network: subscribe to their newsletter or even donate to their efforts
• Share the film with your family, friends, and health caretakers
• Share this post or the documentary's trailer on your social networks
• Donate to the film creators to fund community screenings and film festivals

While I've written about my lack of infinity for the term pain warrior (see post) because I don't see myself as fighting the pain, I do see my role as a warrior to fight for early chronic pain diagnosis (see my post about childhood symptoms of FMS), for serious research leading to better understanding and treatment of chronic pain, and a change in societal views and treatment of those living with chronic pain. I state it here and now.  I will do all that I am able to help bring living to its FULLest for those with chronic pain.

Thank you for visiting my blog today. I have decided to publish this a bit early this week to get a jump start on spreading the word of this very important documentary.

 

I am committing to posting once a week on Fridays.  

However, as you know, my new normal means that sometimes I have to listen

to my body and am not able to follow through as planned. 

Thank you for your understanding.

Click link Subscribe to Pain FULLY Living Weekly Posts by Email

Mother's Day Memorial: A Mental Health Check In

My mom's senior portrait; she was
only 17 years old.  To me, she looked
like a movie star.

This is a special Mother's Day. I am going to turn 56 at the end of this month. The same age my mother was when she took her own life. The last time I saw her in person was Mother's Day 1990.

We gathered with all her siblings and their children as we always did for big holidays at my grandparents' home. This was always a joyous and boisterous occasion with round-robin conversations catching up with everyone. I don't remember much of this visit. Our 6-month old son and two and a half-year-old daughter kept our focus, I'm sure. What I do know is my mom and I didn't take any time to talk just us two.

FORESEEING

Mom made that jacket for me out of
a high-end remnant she bought at the fabric store.
(Notice the wall of photos in the background.)

Looking at her senior photo, the one hanging on the wall of my grandmother's home among the five other framed photos of her siblings, my mom looked to me like a movie star. She was the second oldest. Her parents' first daughter. To look at her portrait, no one could not have ever foreseen the turbulent, frenetic future she would have.

Just when her mental illness began, I'm not sure. Looking back on stories she told me as a kid, I'm thinking it began during her college years. However, she always had a bit of an edge to her from what I've been told. She was always headstrong and very independent which led her to work at some job or other from the age of 14 years on and to travel to England to study nursing.

Mom and her friends from her time
in England.  She told me that
the man on her right was suppose
to come to America soon after so that
they would be wed, but he never did.

UPBRINGING

While my kidhood was unpredictable with many highs and lows, I have come to cherish all she strived to give my sister and me. She was a single parent who was dealing with undiagnosed mental illness. She worked hard to provide a home for us. We were very poor, but she never took any public assistance. Now and then, she'd ask for financial help from her parents, but that was always as a last resort.

She had me out of wedlock. My father, whom I never came to know, paid her $16,000 to leave him and his family alone. She put that money into buying our home which had three other apartments for her to rent out. I've come to understand that in 1964 that her decision to have and keep me was an act of bravery. With the support of her parents (we lived with them for the first six months of my life), she forged a life for us. She got a job at working for a doctor as office staff and soon met a man who offered to make us a part of his family. Cal and she were married (no photos that I know of), and I had my first birthday living with him and his daughter (his first wife had died from cancer).


As her mental illness began to show more and more intensely with the apex being an episode when she, in anger, punched her fist through the front plate-glass window requiring many stitches in her palm and up the inside of her wrist, he asked for a divorce citing he couldn't put his daughter through more instability and trauma (understandable). The sad thing is no one (her husband, doctor, or family) thought to look into this event to see what was the cause. Mental illness was not talked about.

My first birthday. 
My mom made the cake.

But, she did not give up. She found a little log cabin on the side of a lake that she rented for just the two of us. I believe we lived there for a year. And from the photos I have of that time, it looks like it was wonderful. She continued to work for the doctor while I stayed with an older woman down the road who loved taking care of the two of us.

My mom made many of my outfits
in my first few years of life including
this cute bunny costume.

My mom certainly took care of me. She made my clothes and even my Halloween costume. When we were snowed in during the Great Snowstorm of 1967, she built a snowman as tall as herself. She threw a 3rd birthday party for me. It was then that she introduced a man she had met at a singles group gathering. He was to become my step-dad the next year and soon after, my baby sister was born.

Snowstorm of 1967. Mom built
a snowman for the two of us.

Joe, my step-dad, was a kind but wounded soul. He had six children of his own from his first marriage. He'd been through AA (and I don't recall any drinking issues while he lived with us). What I do know is he wasn't really thrilled to add two more children to his roster, especially one that wasn't a blood relation. However, he was kind and funny, and I have warm memories of his presence. During the two years that they were married, I do remember major fights. Mostly, my mom screaming and dishes breaking. This led to their divorce-still no one (that I know of) pushed for looking into what was going on.

SOOTHING

I have heartwarming memories of my mom. She loved to scratch my back and play with my hair. On long car rides, as we listened to music or a radio drama, I'd lay my head on her gas-pedal leg (in the 70's there wasn't mention of seatbelt-safety), and she'd run her fingers gently through my hair. This is still an ingrained, self-soothing automatic action I do. If ever you see me sitting, my arm up in the air as I bring strands of silky, cool hair through my middle and pointer fingers, you know that I'm stressed or thinking hard on something.

She allowed us to have pets. This was always a special comfort to my sister. She still loves her dog like a best friend and each of her three children have grown into animal lovers.

Through our growing up years, my mom made a living by owning two apartment buildings.  The one on the lake that she purchased when I was a baby and one that she and Joe purchased in the first year of their marriage.  We would live in one of the apartments, and then the three of us would do the upkeep.  My mom taught us what it meant to work.  At an early age, we learned to weed, mow, paint window sills, etc. And then after a few hours of work, she'd tell us to stop and go for a swim or go play while she kept on working.  One of my favorite memories was once her workday was done, she'd often treat us all to get an ice cream at the little shop on our drive home. Both my sister and I are still hard workers, not afraid to tackle pretty much any task on our own.  We learned that from her.

MY VERY CORE

The core of who I am comes from her.  As I've indicated, we were poor.  However, most who saw us wouldn't know that there was minimal food in the house or bills that were overdue.  She kept us looking pretty middle class. I came to love the hand-me-downs she'd get from the "rich" side of town's churches more than new clothes because they were soft and worn in.  

One time, she got a used bike for me.  It was WAY too big. So, she put two-by-fours chunks of wood on each side of the pedals, and I learned quickly how to balance and ride it without falling.  It wasn't the banana seated beauty I had wanted, but it allowed me to get around the neighborhood with the other kids.

This isn't the actual bike, but
it looked very much like this one
(except blocks of wood on both
sides of the pedals)😂

She taught me how to drive, how to be an independent thinker, to love learning, reading, and story.  She gave me opportunities like attending multiple VBS programs in the summer, going to camp, being involved in band, and taking extracurricular classes like macrame and painting. I was able to be on my school's swim team and volleyball teams. She made homemade popcorn balls for me to bring to school. (Oh the 70's, when homemade treats were still allowed!)  I was really popular that day in 4th grade.

My mom showed me how to be determined, honest, and caring.  She encouraged me to help others. She made me face the consequences when I lied. She didn't allow me to feel like I couldn't do.  She talked to me about college and traveling to England. She filled me with goals to one day do the same.

My mom made me feel special. When I was sixteen and kind of an outsider in my high school because we had moved to this small town only two years prior, she threw a big birthday party for me.  We were dirt poor. I mean the type of poor where neighbors send over donations because they know you're hungry. She arranged for the teenage neighbor boy to be a DJ, and we had homemade snacks and punch.  That night, I felt like I had broken through the stranger-wall with the kids from my high school.  I still remember feeling pretty darn cool, dancing with a boy who became my boyfriend for the next few weeks. 

PANICKING

One funny but could have been a horrendous story that I look back on with awe is the time my mom took an auto repair course at the local community college.  I believe she got to attend free through some sort of program.  We couldn't afford a new car, so her plan was to replace the engine in our car herself for very little money.  She aced the class (did I tell you she was tested at 145 IQ) and began the project in our back yard.  The part I remember is the day when the engine was ready to start.  She had gas in it and all was primed to ignite. 

I was in fourth or fifth grade at the time, so even though I tried to start the car, I couldn't.  So, she had me get out and look under the hood while she turned the key.  We were elated when it turned over and purred. That was when I noticed water coming from a loose hose.  I called out to her but was too late! 

The engine caught on fire. I had some singed hair but mom without too much panic turned off the engine, got the water hose, and quickly extinguished the fire.  Unfortunately, the car was a total loss. Looking back at this event as an adult, I'm amazed that none of us panicked. 

ACCESSING

It was soon after my 16th birthday party when she really began to let her mental illness show more and more through the cracks.  Looking back, as I was making friends and groups outside of our home more and more, I think she knew she'd done all she could do to grow me. 

We had begun to fight more.  She was upset that I was choosing my friends and school over her.  She was also sinking more and more into bizarre behavior.  She'd go on frenetic shopping sprees using store credit that she couldn't pay off.  She'd only buy things that were bargain-basement deals, but she'd buy so many things (all for her dream of running a home for wayward boys). She'd spend days upon days on the couch.  My sister and I would make "meals" and try to keep up with the housework.  But being we didn't have a washing machine that worked, dirty clothes piled up. By the end, dirty dishes covered the counters and filled the sinks. She'd ask me to rub her feet or play with her hair. I would do it dutifully for what seemed like hours. Boy, I was so angry at her not taking care of us.  I didn't know anything about anything back then.

One Sunday after church, we were invited to my youth group leaders' home for lunch.  During the adult talk, my mom went into a psychotic episode. (My sister and I had known of these times but didn't know that we should seek help for her.) Due to her threatening to hurt herself, the police came.  She was taken to live at the state hospital (now defunct) in Kalamazoo.

1980-My sister and I visit my mom at Kalamazoo Psychiatric  Hospital.
She was pretty vacant and zombie-like
due to all the medication that they had her take.

It was there that they accessed her mental health. She was diagnosed with schizophrenia and bipolar with delusions of grandeur. She remained in the care of the state from then until 1989 when she was allowed to get her own apartment. Being I had gotten married in 1985 and was living on the other side of the state with babies and working as hard as a new teacher, we didn't see each other a lot. The last time we were together, just us, was soon after my son was born in December of 1990. My sister and her husband were able to pick her up and bring her to our house for a Christmas celebration. It was an uneventful, calm, normal family get-together. Everything I had always hoped for.

She called me on my birthday. I always got a tensed-up stomach whenever I heard her voice on the other end of the line, thinking something was wrong. All I remember from that conversation was that she sounded happy.

It was May 31st, nine days later, that my uncle called to let me know that my grandmother, who had driven over to my mom's apartment to pick her up for a pre-planned outing, had found her body lying in the shag carpet. While I never saw the scene, the image is ingrained in my mind based on the few details he provided. She left a simple, yet powerful note.

I Still Miss Her

Our relationship was turbulent, to say the least. But 29 years later, I still miss her deeply. I think I've lived my life trying to save those I care about through my roles as daughter, mom, friend, granddaughter, teacher, and ... I realize that my greatest fear is I am not enough to save those who need saving.

In Memorial to Joanne Kathryn Sherwood-My Mom

I ask that you talk openly with the ones around you. I ask that if you need help, you seek it.  That if you can give help to someone who isn't asking, do it. During this time of pandemic quarantine, especially, check-in with one another. There are so many who are hurting and not doing well.  There's more than just the virus that is deadly.

If you or someone you know needs help, here are a few resources (in the USA):

• Substance Abuse and Mental Health Service Administration
• National Institute of Mental Health
• The 9 Best Online Therapy Programs of 2020

The format for this post is thanks to A Chronic Voice link-up. This month, the topics were foreseeing, panicking, upbringing, accessing, and soothing. Each writer takes the given topics and gives them their own spin. Check out these wonderful writers at May 2020 Linkup (scroll past the prompts to find the linked up posts).

Thank you for visiting my blog today. 

I am committing to posting once a week on Fridays.  

However, as you know, my new normal means that sometimes 

I have to listen to my body and am not able to follow through 

as planned. 

Thank you for your understanding.

Click link Subscribe to Pain FULLY Living Weekly Posts by Email