Background of flames with image of a young boy being checked out by a doctor to the left and title below: PAIN WARRIORS. To the right, white font A WAR CRY! PAIN WARRIORS TACKLES THE OTHER SIDE OF THE OPIOID CRISIS

A War Cry! Pain Warriors Tackles the Other Side of the Opioid Crisis

Background of flames with image of a boy being checked over by a doctor, Pain Warriors title underneath. A War Cry! Pain Warriors Taking the Other Side of the Opioid Crisis

Ignorance of the Opioid Crisis

I have never been a fan of prescription opioids for pain relief. 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 of Pain Warriors

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, after a serious car accident 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 under-treated 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 I witnessed the pain of the five individuals whose stories are told in such a raw and eloquent manner.

A Synopsis of the Film

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 how they’ve woven together these 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 the reported numbers of those living with chronic pain in Canada-7 million, USA- 117 million, UK: 10 million, and Australia- 1/5).

A smiling woman  with long blonde wearing all cream colored clothing with long cream colored scarf, kneeling on a rug in front of a table with candles and photos of gurus.  Sherri Little was a victim of the opioid crisis.
Sherri Little left no stone unturned to try to manage her pain. In her memory, the Sherri L Little Organization was formed to champion pain research.

Sherri’s Story

The film is dedicated to Sherri Little who lived with debilitating pain of Fibromyalgia and an inability to digest food due to inflammatory bowel disease, severe colitis, and other conditions. After years of trying every option, her cry for help 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.

Young red-haired freckle-faced boy laying in bed on a red pillow holding  playdough.  He's staring into the distance with a forlorn look. Hunter is a victim of the opioid crisis.
Hunter, 11 years of age, faced severe chronic pain due to treatment used to defeat cancer.

Hunter’s Story 

Little freckled-faced Hunter, 11, and his mom tell 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 the chemo defeated the cancer within him, it also broke things in his body that has now caused his chronic pain. His mom states that Hunter, “…feels like he’s unheard. He feels like he’s unbelieved.”

Young smiling mom looking at a toddler with winter coat, hat, mittens on near a door as she kneels next to him. Yanekah is a victim of the opioid crisis.
Yanekah shares her life while living with chronic pain and being a young mom.

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, Karen 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. Through more research, she found another doctor who would perform repeated surgery to construct patches. These did not hold.

Smiling older man with brown-grey hair.  He's wearing a white doctor's coat, dark blue shirt, pink tie, stethoscope, and nametag lanyard. He's standing outside of a brick business building with steps. Dr. Ibsen is a victim of the opioid crisis.
Dr. Ibsen has stood by his patients only to be driven out of practice.

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 were taking opioids to manage their symptoms. They flocked to him because their own doctors had stopped prescribing them their medication due to the CDC’s new policy. Doctors fear a stiff sanction from the medical board if they didn’t stop prescribing opioids to their pain patients. 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

Pain Warriors hit the streaming platforms this past May. It is available on all the major platforms. Petrova had planned to hold large showings but COVID-19 has put a damper on that.

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.

Need to Keep Opioids in the Chronic Pain Treatment Tool Box

Dr. Ginevra Lipton, chronic pain doctor who is also a patient, writes 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.”

A vertical timeline with a few images that represent the time mentioned.  There is text next to each date describing the role of opioid use at that time, leading from 3400 BCE to the current opioid crisis of today.

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

While I’ve written about my lack of infinity for the term pain warrior (see my post: Those Are Fighting Words! Metaphors Make Meaning) 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.

Ur In Trouble: Interstitial Cystitis and Fibromyalgia

Ur In Trouble: Interstitial Cystitis and Fibromyalgia

It’s not fun to acknowledge
when you are having “urine problems”.
I find it to be one of the most silent and
life inhibiting issues I face with FMS.

November is Bladder Health Awareness Month

Update: I’ve been recently diagnosed with a rare disease that they think is actually underdiagnosed-Fibromuscular Dysplasia (FMD). I have it in my carotid arteries and am having tests soon to see if it’s anywhere else. FMD causes arteries to harden or become brittle. This can lead to aneurysms or tearing. One of the areas can be in the kidneys. Because of an abrupt increase in my blood pressure increase, I’m getting an ultrasound to see if I have renal FMD. I’m not yet sure if FMD in the renal arteries would contribute to issues in the bladder.

There are many, many co-occurring issues that can come with Fibromyalgia (FMS). Interstitial Cystitis (IC) is one of them that isn’t mentioned much in the FMS community. I was diagnosed with IC about 15 years ago, when I was 40. However, I believe I’ve had some level of IC for most of my life.

In the article Fibromyalgia and Related Conditions written by Dr. Daniel Clauw of UofM for the Symposium on Pain Medicine in 2015, he states,”Nearly all individuals eventually diagnosed with FM have several bouts of chronic pain in other regions of the body earlier in their life.” Among the long list of comorbid issues interstitial cystitis/painful bladder syndrome. He explains,”This disorder often begins in childhood or adolescence, and individuals who eventually go on to develop FM…”

I don’t have all of these symptoms
and compared to some, my issues are moderate.
However, its impact on my daily life
and self-perception has been damaging.

IC Progression

As a child, I hated taking time out from life to use the bathroom. I prided myself on how long I could go without peeing. To do that, I didn’t drink much. Back then, there wasn’t talk about drinking water and certainly wasn’t a concern in my family. However, this penchant for not going to the bathroom, during my elementary years, combined with my people-pleasing ways would sometimes lead me to have accidents on my way home from school because I hadn’t wanted to miss anything that was going on in class.

As a teen and a female, I was acutely aware of my weight and body image. I always felt overweight and was conscious of what I put in my mouth. Back then I remember thinking and even saying that, “I rather eat my calories than drink them.” While this isn’t all that bad in theory, it didn’t mean I was drinking water. To me, water made me gag (I was that unused to drinking it). So, what it meant was that I didn’t really drink much at all. What I did do, though, was to eat a lot of fruit, mostly canned back then.

Then, I began my teaching life. My doctor at the time said that it was very common that teachers had urinary tract infections and bladder infections because they were infamous for not drinking water and not being able to go to the restroom as needed. At this time in my life, I went from UTI to antibiotics, to yeast infection, to UTI sometimes leading into a bladder infection, to antibiotics, to yeast infection,…over and over and over. There was a time when I found myself going to the doctor every couple of months. One odd thing, though, was often, the “infections” were found out to be false when the urine test was finally completed a few days after I had already started the antibiotics. At that point, the doctor would always tell me to finish them “just in case” which I dutifully did.

It wasn’t until I started having severe urgency and frequency (at this point I had finally learned that drinking water was important and had come to enjoy it) that led to a few embarrassing accidents at school that I went into an OBGYN doctor who also specialized in Interstitial Cystitis. At the age of 40, I was diagnosed with IC, after umpteen misdiagnosed infections.

As far back as I can remember, I had an aching in the area below my belly button. What made it feel better (and still does to a degree) is pressure and warmth. To my husband’s chagrin, I was the clingiest spooner at night (when I most noticed the aching). His cute booty provided the exact pressure and warmth to calm the ache and let me sleep. I didn’t know that ache was due to a problem with my bladder.

Been There. Done That

I’ve done all(multiple times) but the last line
of treatment, and I am
determined NOT to go there!

I was thrilled to get a diagnosis and find out that I was not having constant infections. I first was put on Elmiron for two years. This seemed to help with the pain at first; however, by the end of the two years, once I was off of it, I didn’t notice any difference. I was just used to the continuous dull ache in my bladder all the time. (I liken this pain to the ache women get when menstruating with bad flares feeling like my bladder was on fire.) Also, I was introduced to Prelief which is an OTC dietary supplement that removes acid from trigger foods. This does seem to help with pain to a degree. My urologist also suggested I take aloe vera. I’ve used Desert Harvest Super-Strength Aloe Vera Capsules, and these seemed to help some as well.

In addition to medication, I adjusted my diet as much as I could. I eliminated coffee (mostly due to the acid). There are some chicory and low acid coffees, but I have not found any locally. I have always been a semi bland eater due to acid reflux, so I have mostly stayed away from acidic fruits. However, with me being lactose intolerant (I could eat a piece of cheese and be cleared out for a colonoscopy), giving up all things tomatoes is nearly impossible. And I also refused to give up wine. These non-concessions are when I use Prelief.

You’ll note that most of the “good stuff”
is on the avoid list.

Besides, the pain, the frequency (especially in the morning) and urgency (which comes up strongly and seemingly out-of-the-blue) was the most embarrassing and difficult issue I had to contend with, especially at work. As a teacher, even when we are all having a break, students would invariably want to talk to me individually during this time. Some would even follow me to the bathroom, and I’d have to finally say, “Excuse me” and hedge my head towards the staff bathroom’s door, for them to realize I had to use the loo.

I have used four types of prescription medication to alleviate frequency: Enablex, Tofranil, Myrbetriq, and Vesicare. These caused symptoms that were not fun: constipation, fatigue, dry mouth, dizziness, headaches, nausea just to name a few. And in the end, they didn’t really seem to make a huge difference which I only found out after I got the courage to stop taking them.

For pain and the frequency/urgency issue, I have gone to four different pelvic-floor physical therapists. For someone who had planned what she would wear for her first delivery (for the 2nd, I knew better) and was too inhibited to get a massage from a stranger, this was really a step of desperation and a major lesson on not giving a damn. During my third stint of physical therapy, my urologist suggested botox injections at the trigger points in my bladder. This was an outpatient procedure that did involve me going under anesthesia. Sadly, I had no change in my symptoms.

My last PT suspected I had a labrum tear in my left hip; she said that she had been finding a connection between IC and hip-labrum tears. She, then, referred me to a specialist who after an MRI verified that this was the case, so I had the surgery.

Insterstim is a device that send selectorial stimulation to the sacral nerve, which is thought to normalize neural communication between the bladder and brain and between the bowel and brain.

Being, in the end, these did not make much of a difference in my IC symptoms, I went to see another urologist who suggested it was time to implant an Interstim which a device the size of a quarter. This surgery was outpatient with local anesthesia only. I have a one-inch scar near the top of my left glute and a smaller incision at the sacrum. This healed up easily and being I did it during spring break, I didn’t have to have any time off from work. There is a remote control that can change the level of stimulation delivered as well as change the program which determines the direction of the electrical pulse. I tell people, “It’s like a pacemaker for my bladder.”

This implant seemed to really help for a bit over a year (I had it two years ago). However, I began to have site pain in my left glute and was having ongoing sharp pain in my left psoas which became convinced was coming from the electrical stimulation and my crazy Fibro-amplified nervous system. I chose to turn it to zero for about three months. During those months, with chiropractor adjustments, medical massage, and yoga, the sharp pain went away. I was set on getting it removed.

However, after seeing my urologist, and hearing what the removal would be like (not as easy as the implant surgery), we came up with a retry. She reprogrammed the device and set me up with new physical therapy which I have just started.

Getting tired of having to
know the whereabouts of every
bathroom wherever I am.

And so, I am working on retraining my bladder which in the end is just like retraining my brain with an addition of a few exercises. My goal is to be able to comfortably go on upcoming hiking trips (in which restrooms are not readily available and dropping into a squat in the woods isn’t fun to do every hour.)

Helpful IC Resources:

If you are suspecting IC or are contending with IC issues, I’d love to hear from you. I have gone through nearly every treatment; I sure hope I don’t ever have to get to the bladder surgery step.

teal line drawn waterlily with teal lettering of the title and motto
The Danger of Distraction: Turning Toward Pain to Eliminate Suffering

The Danger of Distraction: Turning Toward Pain to Eliminate Suffering

As we are all hunkered down at home, figuring out what to do with all our extra, unstructured time has been a hot topic. Posts share activities to do alone, with our children, with others outside of our walls via technology tools such as Zoom(live meditation, book club, or family talk sessions), YouTube (online Tai Chi, house concerts, book readings), and Board Game Arena (where you can play board games online with people all over the world).

I have friends posting the latest puzzle they’ve completed, new drinks they concocted with special COVID-19 satirical names, socks they’ve knitted, and latest movie marathon or binge-worthy show they have found.

While all of these things are wonderful, and I am so thankful to have so many options for how to spend my days while at home, I have come also to understand that it can be detrimental as well. I’m sure I’m not alone when I share that I’ve been feeling emotional pain (anxiety and sadness) along with physical pain-Fibromyalgia muscle and joint pain all over my body that flares up in roving areas throughout the day. When I experience pain, my goal is to always get rid of it. I see it as bad and not a feeling I want around. If I can be distracted from it, I chose that.

Distraction from Pain Doesn’t Heal Pain

If you’ve been following my blog, you know that I’ve been taking an online Mindfulness-Based Stress Reduction (MBSR) meditation course through (To get a background for what I’m doing, check out this post Mind Over Matter: 21 Days of Meditation.) During week 5, I was introduced to a woman who has had a lifetime of severe pain (physical and mental),Vidyamala Burch, who has created a mindfulness program to live well with pain. She explains in her book Living Well With Pain and Illness, “When you bring awareness and curiosity to the actual experience of pain, often you find that it’s not as bad as you feared.”

The focus of my last two weeks has been to use meditation when I’m not feeling well (physical pain or emotional pain) to then TURN TOWARDS pain. I also just finished reading The Subtle Art of Not Giving a F@#!$ by Mark Mason which hammered in the same premise. “In every case, we can choose to avoid our pain or choose to engage our pain. When we avoid our pain, we suffer. When we engage our pain, we grow,” states Mason in his blog post My Life Philosophy.

“We suffer for the simple reason that suffering
is biologically useful.It is nature’s preferred agent
for inspiring change.” -Mark Manson

During my studies this past week, I was introduced to the idea of the Felt Sense which isa concept that describes internal bodily awareness that arises from increased awareness. Basically, it is a turning towards the sensations in our body (often difficult to describe) to bring them to consciousness. Manson suggests, “We suffer for the simple reason that suffering is biologically useful. It is nature’s preferred agent for inspiring change.”

Much like the Disney movie Wall-e shows, if we were always content with no problems or pain, we’d also become complacent. With pain and need, comes innovation and solution. I’m sure if I had not developed Fibromyalgia, for example, I would not be here writing, researching, digging into knowing more about what makes me tick. I was pretty content to ignore myself. But my ‘self’ wasn’t having any of that. The poem, The Felt Sense Prayer, concretely illustrates how the human mind and body work together not only to protect us but to grow us.

It’s a longer read, but so worth it.

Tara Brach, Psychologist, Author, Teacher,
reads this poem and shares how she
came to turn towards her own pain.

Manson contends, “Like physical pain, our psychological pain is an indication of something out of equilibrium, some limitation that has been exceeded.” If we then focus into that pain, becoming aware it’s there, we are then able to come back to balance.

Burch has created a 5-Step process to turn towards our pain so that we can live FULLY.”… the only authentic and sustainable way to be fully alive is to be open to all life’s moments, not just the ones I prefer,” she explains. This life is short; I want to live as fully and as authentically as possible. My years of ignoring, blocking, and last year this time, drowning in pain, has brought about a sense of discord between my body and mind. These past three weeks of consciously turning toward pain (emotional and physical), I am noticing a sense of ease and balance blossoming within.

Step One: Awareness

Meditation is just taking time to focus inward. For me, I focus on the feel of my breath coming in through my nostrils, down my windpipe, and into my diaphragm like a cool, silky ribbon. Then, at the turning point of exhaling, I follow it’s warmth in reverse; inevitably, my body releases a bit more into the bed, mat, chair as I do this. Getting distracted is natural. Burch explains, “You’ll probably find yourself caught up in distractions hundreds of times a day, but choosing awareness even once is a victory, no matter how fleeting that moment may be.” So, I’ve learned not to criticize myself for having a monkey-brain, but to notice and celebrate when I realize I’m off my focus point and come back to it.

Step Two: Turn Toward the Pain

This is the time when I pick out one thing to focus on. Maybe the aching, burning pain deep in my left thigh or the tight, weighted feeling in my chest that shows up when I’m anxious. As I continue breathing, I focus on the feeling, imagining the breath to reach right there. I may even put my hand on the main area. And then, I work to notice the sensation, being as descriptive as possible: burning, aching, sharp, sadness, loneliness, etc. My meditation teacher, Dave Potter, says to say “I notice that there’s something in me that has the feeling……” This wording allows me not to identify myself as this difficult feeling but to acknowledge that it is there. I notice the area, size, shape, and texture of the sensation. Sometimes it is thin and blanket-like, resting almost over top of me. Other times, it seems to be rounded and blobby, thick as a doughnut. It can be sharp and hard or dull and wooden or elastic and ropy. I notice my feelings about this sensation. At this point, I work to soften my approach to it; allowing it to be. Treating it and myself as I would a child who was hurt, being gentle and loving.

Step Three: Seeking the Pleasant

Breathing into the difficult sensations, accepting them as they are, I begin to notice minute changes in the feelings. Then, I begin to scan my body. Starting at my toes and slowly scanning to the top of my head, I search for a pleasant sensation. At first, I really didn’t get this. I have pain all the time in nearly every part of my body. However, with practice, I’ve gotten better at noticing the little pleasant tingle in my earlobe, or the buttery softness of the blanket that’s covering me. This is not a distraction of positivity as Burch explains,”This attitude of sensitivity, openness, and honesty to the whole of your experience, including your pain, now allows you to gently turn to the pleasant aspects of the moment that have been there all along, just outside your field of awareness. You can feel stable and whole, rather than grasping for pleasure to avoid your pain.”

Step Four: Broadening Focus to Develop Equanimity

At this point, after about twenty or more minutes in the above three stages, I spread my focus to encompass my whole body (noticing the pleasant and difficult sensation is still there). Widening out, much like you do when you zoom out in Google Maps. Focusing then on the room I’m in, still noticing my body’s sensations, then widening out to the neighborhood, town, and world. This seemed like a hokey part of the turn towards meditation; however, I’m beginning to understand and assimilate that this is the time I realize I’m not alone in this. I am reminded that pain is a part of the human experience. This leads to acceptance and non-judgment of my situation (equanimity).

Step Five: Learning to Respond Rather Than Reacting

I can choose my response to whatever difficult feelings I’m experiencing. I can choose to accept and soften into it, being loving and gentle with myself. “Rather than feeling your pain is right on top of you and you’re trapped in a battle that leaves no space to choose your response, you can find ways to respond creatively to any circumstances with a soft and pliant heart,” teaches Brach.

This is not magic. It takes practice, over and over. I’ll notice, hey my throat feels tight and achy. When that happens, taking time to Turn Towards right then, makes this a choice that gets easier and easier. And as I am finding, more effective each time.

Vidyamala Burch explains how she’s learned to manage her own pain through meditation and breath work. (21 minutes)

Helpful Resources:

How do you handle difficult feelings/sensations? What do you think of Vidyamala’s method of turning towards pain to live more fully?