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 Illness manages chunks of my life but I’m still managing the rest, I’m not depressed, I’m not withdrawn, I’m engaged in my life and stay active.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.