Video Portrait Ernie

April 3rd, 2013 by Kris

Ernie continues to practice carpentry at home, despite his chronic pain.

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.

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

Video Portrait of Nanette

April 2nd, 2013 by Kris

Nanette lives in Maine with Fibromyalgia / Mytosis.

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.

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

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.

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.

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.