Painting Pain

Hi, my name is Heather Bolinder and I am a chronic pain patient.

I am a native Cape Codder from Massachusetts and I was a very active person, involved in volunteering, founder of the Harwich Community Playground, a member of the Cape Cod Art Association and Harwich Artist Guild. I worked as a volunteer E.M.T in Colorado, as well as a private duty nurse’s aid and raised two beautiful children. I graduated from Mount Ida College with a degree in Fine Arts and went on to teach art at a local studio as well as a professional artist, which is where my pain story begins.

It was a beautiful day in late July of 2007 – I was sitting working in my garden when all of a sudden I had excruciating pain in my back. I was paralyzed, unable to stand; it was the most devastating pain I had ever experienced. The pain was shooting down my spine into my hips, pins and needles in my legs. I was nervous, scared, I did not know what to do. I slowly crawled into the house, called 911 and was taken to the hospital. My life was FOREVER changed in that one moment.

I arrived [...] continue the story

The “Difficult” Patient: It’s Time to Replace the D-Word

November 2, 2011

I hear the phrase a lot from doctors, physician bloggers, surgeons, nurses, fellow patients and loved ones; being labeled the “difficult patient” because of a chronic or complicated illness.

I’ve heard “the difficult patient” referred to as a lot of things: the patient with a nasty attitude; the patient who refuses treatment or refuses to take care of their body; the patient with a complicated family situation; the patient with a terminal/complicated disease pattern; the patient whose disease remains a mystery; the patient who can’t give a straight answer; the patient who has a chronic illness.

Most of those definitions I understand. But it’s the phrase I have an issue with when it comes to being the chronically ill patient.

For those of you reading this that are healthy, I want you to stop and imagine the following: You are sick all of the time. You have fevers and can’t control when you’ll have a hot flash or cold sweat or chills; diarrhea or constipation; cramps or nausea. You have pain: muscle and joint everywhere, all the time and often without relief. You might have chronic migraines, numbness, memory loss and disorientation that comes and goes. You are fatigued, and by [...] continue the story

Our Kids – Meet Shanelle

Since early adolescence, 18-year-old Shanelle has dealt with almost constant, debilitating pain. She suffers from neuropathic pelvic and idiopathic musculoskeletal pain.

The medications initially prescribed to her caused serious side effects and she began to feel isolated and hopeless. A referral to the Pain Clinic at The Hospital for Sick Children transformed Shanelle’s outlook.

The interdisciplinary care team at SickKids taught Shanelle many techniques to enable her to manage her pain effectively. She learned relaxation techniques, doctors prescribed medications that significantly reduced serious side-effects and, most importantly, Shanelle gained the knowledge needed to manage her symptoms in the future to help her return to a normal life.

“I am so grateful to my pain team,” said Shanelle, in a conversation with SickKids Foundation. “They lifted me out of a very dark place and gave me life-long tools.”

Today, Shanelle feels optimistic about her future. She is looking forward to obtaining a university degree in education to become a school teacher.

The challenges of living with invisible pain or illness

In May of 2001, I got sick with what the doctors thought was an acute viral infection. But I didn’t recover. As the months went by and I didn’t get better, I felt as if I’d entered a parallel universe that I didn’t know existed. One reason this universe is largely invisible is that many people living with chronic pain or illness don’t look any different from those around them. We simply don’t look sick or in pain.

I should qualify that. The people who are with us all the time know that we are suffering. They see those subtle differences in our demeanor when our symptoms intensify. These are our caregivers (called “carers” in many countries) and they inhabit this parallel world with us. At the end of this piece, I’ll talk about the unique challenges they face.

I was surprised to learn how many medical problems are invisible to others, even illnesses that are life-threatening, such as cancer and heart disease. I’m sure that most television viewers who saw Venus Williams—recently diagnosed with Sjögren’s Syndrome— watching from the stands as her sister played in the U.S. Open tennis final, thought, “But she doesn’t look sick.”

What are some of the experiences [...] continue the story

Re-imagining my disease…

I like to make up stories to comfort myself. Today’s pretend is that I share the same soul with a warrior nun in fantasy Shogun dimension. When I feel like my hand is being stabbed, it’s because she’s battling in her epic quest to save her world from evil. Something in the universe just got our nervous systems crossed, and that’s how she’s able to survive where others wouldn’t. I wish her well!

One of the most important things I have learned over the course of my disease is that there’s no use making excuses. People can’t see my illness, so they don’t understand what I’m going through. My disease makes me unreliable, lazy, upset, and distracted. My experience is debilitating pain, fatigue, anxiety and despair about what I’m going through, and preoccupation with managing my symptoms. But that doesn’t change what it looks like from the outside. I could say it’s not my fault, which is absolutely true, but that just looks like whining and excuses.

I have another option, though. I can OWN it. Yeah, I have to sit a lot. Yeah, I stroll along the sidewalk. Yes, I’m a princess and will ask for the comfortable chair from you. [...] continue the story