Video Portrait of Sue: Part 3 of 3

March 28th, 2013 by Kris

Sue lives in Saco, Maine, with a diagnosis of Rheumatoid Arthritis (currently in remission). Realizing that she is not alone in her experience of chronic pain, she started the Chronic Pain Support Group of Southern Maine.

This video is a product of a collaboration between Lindsay St. Louis, Senior Undergraduate Neuroscience Major, Old Town, ME and Mike D’Apice, Communications Major/Art Minor graduate both of the University of New England. Lindsay started volunteering for the Chronic Pain Support Group of Southern Maine last fall, and her connections with the members of the group have enabled her to lead this video narrative project.  Mike is a freelance videographer, proficient in the video production process from shooting to video editing, and the art of visual storytelling. See more of his work HERE. Lindsay and Mike will join several other UNE students in presenting their narratives at the 11th Annual UNE Interprofessional Spring Symposium: The Science of Pain and the Art of Healing.

Prose Portrait of Sue: Part 2 of 3

March 28th, 2013 by Kris

Sue lives in Saco, Maine, with a diagnosis of Rheumatoid Arthritis (now in remission). Realizing that she is not alone in her experience of chronic pain, she started the Chronic Pain Support Group of Southern Maine.

Listening is a Specialty: Considering the Importance of Communication in the Lives of Chronic Pain Patients

By Tyler R. Vunk

As a publisher, author, and graphic designer, Susan considered herself to be an expressive person.  A communicator by trade, she could always describe her experience of the world with ease, piecing together minute details, offering others a view that they might not have otherwise known.  In 1991, when a bout of shoulder pain caused her many sleepless nights, Susan went directly to her doctor’s office, explaining the minutia of her symptoms with great fluency.  She found her attending physician to be responsive to her story, and, having been given a diagnosis of bursitis, returned home feeling as though she had been listened to.  “We had communicated well,” recalls Susan, “up until that point.”  However, a short time later, her knees began to swell, as did her hands; searing pains appeared in both her elbows and shoulders, all of which led to a new level of excruciation—one that was literally screaming for a stronger intervention.  Yet, without sleep and in constant agony, Susan pushed forward with her daily routines, continuing to go to her office even though the act of doing so was beyond challenging.

One evening, she was on her way home from work; stopped at a tollbooth, Susan was shocked to find that she couldn’t turn her wrist over in order to take the change from her fare.  Then, in an unexpected move, the tollbooth operator innocently grabbed her, and turned her wrist right-side up, dropping the coins into her strained hand.  “I almost passed out from the pain,” says Susan.  There, on the busy highway, alone with her burden, she was made to digest the limitations that surrounded her every move.  Revoked of her independence, Susan would soon rely upon her husband and teenage son for the majority of her basic needs.  She could neither drive herself to work, nor open a door—sometimes she would be trapped outside, waiting until one of the other tenants could afford her with an entrance.  After each long, emotional day at her job, she would have no choice but to come directly home, immediately taking a dose of aspirin, and collapsing onto the living room couch for the rest of the night.

Even though she continued to see her doctor, Susan found it increasingly difficult to explain how bad her pain was.  For one of the first times in her life, she could not find her words, which only seemed to make her physician grow even more frustrated with her.  “I think he just thought I was a middle aged woman belly aching about aches and pains,” recalls Susan.  Seemingly without options, she went ahead with her prescribed knee surgery, and then immediately began a round of physical therapy.  Dedicated to her regimen, Susan kept going to her treatment sessions, even though they appeared to be making her worse.  “My knees would feel like they went out of joint,” she said, while looking back on her experience, “like you had to put them back in place—it was extremely painful.”  After three months of fruitless visits, the physical therapist knew that Susan’s pain was not going to get better without a different plan, and recommended that she request a rheumatoid arthritis test from her doctor.  Susan, fearing a death sentence from bone cancer, was told that her results were, instead, suggestive of rheumatoid arthritis (R.A.).  While relieved to have finally put a name on her debilitating state, she admits that the moment was bittersweet, as she knew little about her given disease, and even less about how to go about healing herself.  In what she would later describe as two of the “longest months of her life,” Susan elected to stay proactive, arming herself with as much information as she could find on R.A. while she waited to see a specialist.

Although her new physician was much more knowledgeable about her condition than her previous doctor, Susan refused to blindly go along with what was being asked of her. “He was an expert in R.A., and in the drugs that would help my body’s symptoms,” she says, “but I knew my body better than anyone else.”  Even though the specialist was in favor of an aggressive treatment plan, he decided to listen to his patient, opting instead to begin with a less invasive protocol.  Even though the intermediate pharmaceutical approach was not effective, the trust that was developed during those early days allowed Susan to follow her doctor’s advice.  After a bit of time and a lot of patience, her body responded to the stronger medication: the swelling went down, and her pain and fatigue symptoms lessened.  While the cartilage in her bigger joints had been irreversibly damaged, Susan soon found herself walking again, and was able to enjoy the ambiance of a neighborhood fairground—an emotional event that moved her to write her doctor a note of appreciation.  “I was so grateful to him for diagnosing me,” recalls Susan, “for his skill, and his manner, and believing me.”  “He treated me as an equal, and we’ve had a great relationship ever since.”

In 1993, two years after the start of her illness, Susan was still experiencing a tremendous amount of pain.  During a family outing at the symphony, she was exiting her car when she stumbled on the curb, jarring her weakened knees.  Although her son was at her side to assist her, others walked by as she winced, avoiding the sensitive scene altogether.  And, as she stood by her family, trying to regain her composure, a homeless man walked over to the group from his perch on a nearby stoop, looked Susan right in the eye, and, in a gentle, soothing voice, said: “I’m sorry you’re in pain; I hope you feel better soon.”  “I was just blown away,” recalls Susan.  The fleeting moment of understanding that she had shared with that caring individual prompted her to create a support group for those suffering from chronic pain—a place where she, and others like her, could cast aside their stoic fronts, and freely discuss their day-to-day issues.  Although the gatherings were small at first, Susan points out that there was an empathy present in those rooms that she had only previously experienced with her immediate family.  As word of the meetings began to spread, more people attended, motivating her to seek out a sponsorship from both the American Chronic Pain Association and the Arthritis Foundation.  “I’ve been very grateful for the members of the pain support group for sharing their lessons with me,” says Susan, reminiscing about her fifteen-year role as group facilitator.

Now, at sixty-three years old, she is still actively pursuing her health, both by continuing to research her illness, and advocating for her specific needs.  Having recently returned from Washington, D.C., Susan participated in the Arthritis Foundation Summit: a gathering where she, and many others, lobbied legislators in support of better access to treatment, additional research funding, and a loan program initiative designed to increase the number of rheumatologists nationwide.  Two total knee replacement surgeries have helped alleviate a great deal of her pain.  And with the relationships she shares with both her physical therapist and specialist, she is very willing to follow her caregivers’ recommendations; yet, Susan has not forgotten about the rocky path she had to endure before finding them.  While she remains hopeful that the electronic age will bring about less disconnect between medical professionals and their patients, she still feels that doctors are neither effectively speaking to one another, nor involving their pain patients in the process of managing their wellbeing.  “You can’t be an expert in everything,” says Susan.  “Look at the patient not as a patient, but as a person and a partner—everyone is unique.”

About the author - A native New Englander, Tyler R. Vunk is a musician, ghostwriter, and national award-winning essayist. After receiving his B.A. in Music from Wheaton College in 1999, he worked as a musician for over ten years, playing and recording with various acts throughout Cape Cod and Boston.  Although born and raised on the island of Martha’s Vineyard, Tyler currently resides in Southern Maine where he attends the University of New England, pursuing a dual degree comprised of both Neuroscience and English—an odd combination that, to his own surprise, actually encourages two of his favorite pastimes: learning new things and inventing inappropriate mnemonics.

Please leave a comment – do you live with chronic pain?  What helps you?

Heal/Tell Sue: Part 1 of 3
Video Portrait of Sue: Part 3 of 3

Learn more about the 11th Annual UNE Interprofessional Spring Symposium: the Science of Pain and the Art of Healing, April 4, 2013, Biddeford Maine.

Heal/Tell Jane

March 28th, 2013 by Kris

Jane lives with chronic pain in Old Orchard Beach, Maine.

Whether you are an OT,  PT or some other healthcare provider, you need to be aware that pain is pain.  My pain is real, I don’t make it up. I want medical professionals to know about pain that involves the whole person—it’s not just how’s my belly feeling after surgery, especially when I have other circumstances causing different pain issues all at the same time.

I don’t look or act like I’m 77.  That’s my choice.  I don’t give in to the pain because my medical team supports me to have a positive quality of life. My frustration is often because I am not physically able to help with my grand daughter, Mariah.  Every year there are more things I can no longer do.

The time in the day I feel the most pain is when I go to bed at night.  There is often so much pain I can’t sleep.  I manage it by walking around every few hours.  During the day I manage the pain because I’m busy—not letting myself think about it.  Crocheting, reading, genealogy, games on the computer.  All of that helps me get by.  I want to be able to help people, but my body wants to be in bed.

The pain scale of 0 to 10 is often misleading.  Sometimes my pain level is much more than 10, because it is a combination of several unrelated causes of pain that I am experiencing all at the same time. My pain is very complex but it is very real and often difficult to explain.

 I make these prayer shawls for people in my church.  Sometimes people just need some comfort.  This is a way I can contribute and use my time to add comfort to someone else’s life.

I have a good relationship with my medical team. I did have one problem with a surgeon who was on call, and not part of my usual team. At one point in my treatment I heard him tell a nurse that he thought “I just liked the feel of pain meds and it was really all in my head”.  He is no longer a part of my team of professional care providers.

Heal/Tell is a series of narrative and portraits by Cathy Plourde, Director of Add Verb Productions and Holly Haywood of the University of New England.

Please leave a comment – do you live with chronic pain?  What helps you?

Learn more about the 11th Annual UNE Interprofessional Spring Symposium: the Science of Pain and the Art of Healing, April 4, 2013, Biddeford Maine.

Prose Portrait of Robert: Part 1 of 3

March 27th, 2013 by Kris

The following is the first in a three part series that includes portraits in prose, photography and video.  Please meet Robert, an extraordinary person living with pain.

Looking Outward, and Moving Forward: Finding Purpose Within the Cycle of Chronic Pain

By Tyler R. Vunk

Although an aggressive pool of young soldiers had competed against him for the opening, Robert was, at fifty, the most qualified person for the job.  Having placed in the top two percent of all Marine Patrol applicants, the experienced SEAL was in excellent standing going into the final round of the officer examination.  Yet, after his Achilles tendon was severed during an exercise, Robert was forced to wear a leg cast, which disqualified him from beginning the remaining part of the application process: the distance run.  Showing no bias, the Marine Patrol allotted him thirty days to heal before being retested—a seemingly impossible feat, as the man’s attending surgeon had prescribed a six-month recovery period—but Robert was neither willing nor able to capitulate.  With five herniated disks, a fractured spine, and scores of abdominal injuries, the Navy SEAL had learned to fortify his mind with an impermeability that denied access to most human frailties—especially pain, as its avoidance had been crucial for his training, and, above all else, survival.  He cut off his own leg cast, and continued on with a conditioning regimen, dragging his damaged limb over the unforgiving pavement of his neighborhood, refusing to give in to the excruciating torment of his injury.  When the thirty-day period was over, Robert, in front of a panel of ranking officers, took to the track, and went about the task before him.  “I was trained that my mind was stronger than the shell,” recalls the retired SEAL, “and I still feel that it’s true, even today.”  The man met his qualifying time, both earning the opportunity he had set out to obtain, and a respect that comes not from forced stoicism, but an innate will.

While Robert’s career with the United States Navy was both long and accomplished, the physical and emotional demands placed upon him during his years of service would eventually become too intrusive to ignore.  One morning, after returning home from a rigorous workout at a local gym, the retired SEAL soon discovered that he was physically unable to get himself out from the passenger side of his car.  Robert’s normal level of pain skyrocketed.  Parked in his driveway, alone with agony, he tried to convince himself, as he always had, that the pain he was experiencing was an unimportant detail—one that could be easily controlled if he merely focused hard enough.  “You can do this,” he remembers saying to himself, “you just have to get your legs out of the car…but I couldn’t.”  Robert, the same man who had navigated through the unspeakable hardships as a SEAL stationed in the Middle East, and braved the dangers of drop points riddled with vehement floods and typhoons—the same unbreakable machine that had gone on countless diving missions without concern for his wellbeing—was forced to do something that went against everything he had come to associate with strength: he asked for help.  Having exhausted his mind’s influence over his corporeal existence, the man called out to his wife, allowing her to literally pull his lower half out of the car, freeing him to stand upright, and walk on his own.

The events of that day transformed Robert’s life in unthinkable ways.  Up until his late forties, the retired SEAL had never made any allowances for pain—even the word, as Robert once admitted, “wasn’t in my vocabulary.”  Now at fifty-eight years old, he experiences chronic pain throughout his entire body on a daily basis.  Coming to terms with his limitations has been an ongoing process; yet, despite the decline of his physical capabilities, he refuses to live a sedentary life, electing to modify the intensity of his activities to levels that will not cause him any further harm.  As for the management of his chronic pain, Robert has fought hard to gather the resources he now has at his disposal.  While the veteran is grateful to have found a few health care professionals that he can trust for guidance and support, his interactions with the medical community have not been very positive; often riddled with disconcerting conversations and insensitive physicians, the majority of services provided to him have not been useful, as many of them only offer higher levels of pharmaceutical intervention—an approach that Robert would like to avoid as much as possible.  A firm believer that lucidity of the mind is integral for sustaining the body, he relies upon a combination of different methods to manage his chronic pain symptoms—a “synergist approach,” as he describes it—that includes chiropractic alignment, as well as mild exercise.

While physical pain continues to negatively impact the quality of his life, Robert has expressed that his struggle with Post Traumatic Stress Disorder (P.T.S.D.) has been the most difficult part of his health to treat.   After conventional attempts to navigate the emotional tolls of his daily existence failed to alleviate his suffering, he began to readjust his focus—a combination of challenging himself to center his awareness upon the needs of others, and allowing the outside environment to unfold in whatever way it chooses.  Through the twists and turns of his introspective process, the retired Navy SEAL found equine therapy.  Often unrecognized by the medical community, the healing modality has provided some relief from the unrelenting symptoms of P.T.S.D.  “It’s not about riding,” says Robert, “it’s about connecting soul to soul with another living animal that senses your pain.”  The rapport that he has with the animals he cares for cannot be duplicated by a counseling session—“I trust the horse, and the horse trusts me.”   It is this same intimacy that has not only become a crucial part of his symptomatic management, but has also made a profound change upon his life’s direction.  In recognizing the healing capacity of his work with horses, the retired Navy SEAL has become an adamant supporter of equine therapy, suggesting that all veterans who are suffering—whether from P.T.S.D. or some other ailment—might benefit from including the relationship in their lives.  Vivified by his new understanding, Robert is eager to tell others his story, trying to spread hope to those who feel that they may no longer have the ability to cope.  He encourages everyone to find their own passion, look outward, and move forward.  “Not every horse is meant to do everything,” says Robert, ”but every breathing, living horse has a purpose—every horse.  There are no limits.”

About the author - A native New Englander, Tyler R. Vunk is a musician, ghostwriter, and national award-winning essayist. After receiving his B.A. in Music from Wheaton College in 1999, he worked as a musician for over ten years, playing and recording with various acts throughout Cape Cod and Boston.  Although born and raised on the island of Martha’s Vineyard, Tyler currently resides in Southern Maine where he attends the University of New England, pursuing a dual degree comprised of both Neuroscience and English—an odd combination that, to his own surprise, actually encourages two of his favorite pastimes: learning new things and inventing inappropriate mnemonics.

 

Prose Portrait of Robert: Part 1 of 3
Heal/Tell Robert: Part 2 of 3
Video Portrait of Robert: Part 3 of 3

Learn more about the 11th Annual UNE Interprofessional Spring Symposium: the Science of Pain and the Art of Healing, April 4, 2013, Biddeford Maine.

Heal/Tell Patti

March 22nd, 2013 by Kris

Patti lives with chronic pain in South Portland, Maine.

Be sure to see selections from our Portraits of Pain series “Heal/Tell” at the Biddeford arts organization Engine, at 265 Main Street in downtown Biddeford. The Heal/Tell portion of the exhibit will run through April 2nd.


My story is multiple folds. The most recent chapter is about intestinal discomfort. It’s a very odd intestine, with a real big kink—it’s always partially obstructed. I had several intestinal obstructions over the past few years—a mishap after a laparoscopic surgery 11 years ago, which left me fighting for my life. My intestine surgery was one event, and a lot of things went bad. My gut is adhered down by scar tissue. Matted down. I’ve traveled through a maze of medicine.

Had they put one suture in the opening I don’t think I would have had intestines herniate up and go gangrenous. According to standards of practice this was acceptable in the way they close the surgery opening and my doctor not ever seen this complication. I asked her to go back to her team and present my case and ask that they think about how one suture could’ve changed my life. But I’m not sure it has changed their standards. She doesn’t know to the degree my life has been impacted. One suture could’ve changed the outcome and I could not be miserable after I eat.

The system can support us by doing really good communication between providers. The IV pharmacy has been integral in my ability to stay out of the hospital with home infusions to maintain my hydration. It means I am more in the driver’s seat. Illness manages chunks of my life but I’m still managing the rest, I’m not depressed, I’m not withdrawn, I’m engaged in my life and stay active. Last night I went to friends for dinner, and knew I needed to be home within two hours since my pain
usually starts then, I don’t ever forget that.

By getting a multi-disciplinary team who wants to support me, I have a job and I’m at home. I still get hunger, but I can’t think and feel bad at the same time so I don’t eat when I work. I might bring a popsicle to work—it’s a little bit of fluid and some sugar, which helps—it’s a way to stay focused. I work in a health care system and they understand. I still think I do a good job.

One of these days I’ll have an obstruction again, and I’ll have surgery. It’s a complicated surgery, and it could kill me—no one wants to touch it unless they have to.

I want to be engaged and I can’t be if I’m in pain. I try and use lots of methods to keep my pain in check. I have my dog and my heating pad, and I’m very good at distraction so I can deal with it most of the time.

Out of struggle you can have a positive effort. It’s a great to channel energy when I’m not feeling good into something creative and have something beautiful at the end of the pain.

Heal/Tell is a series of narrative and portraits by Cathy Plourde, Director of Add Verb Productions and Holly Haywood of the University of New England.

Please leave a comment – do you live with chronic pain?  What helps you?

Learn more about the 11th Annual UNE Interprofessional Spring Symposium: the Science of Pain and the Art of Healing, April 4, 2013, Biddeford Maine.