Patient and Caregiver’s Perspective




© American Academy of Pain Medicine 2015
Timothy R. Deer, Michael S. Leong and Albert L. Ray (eds.)Treatment of Chronic Pain by Integrative Approaches10.1007/978-1-4939-1821-8_18


18. Patient and Caregiver’s Perspective



Heidi J. Stokes 


(1)
3504 44th Ave South, Minneapolis, MN 55406, USA

 



 

Heidi J. Stokes




Key Points






  • Each patient is unique and multidimensional. Chronic pain invades all areas of our lives—physical, emotional, spiritual, and financial.


  • Pain is abstract. No words, symbols, or a smiley face chart can begin to explain it.


  • Living with chronic pain is a “life”—but not the life anyone dreamed of or desires.


  • Patients living with chronic pain have trouble discerning “emergency pain” from chronic pain.


  • Doctors excel at providing heroic medicine, but often get bored and frustrated when dealing with patients with chronic pain.


  • Americans are led to believe that there is a pill or procedure to fix everything.


  • A compassionate, competent, doctor is a rich blessing to patients and to the world.


Introduction


When Dr. Albert Ray asked if I would be willing to write a textbook chapter about pain from a patient’s perspective, I said “Yes” without hesitation. While I have no degree in medicine, I have been a lifelong academic in the study of chronic pain.

My scholarship began at the age of 17 when a baffling series of health crises led to a diagnosis of systemic lupus erythematosus in my senior year of high school. It marked the beginning of intense, personal research into my disease and the world of pain it brought along with it. While it was never the field of study I would have voluntarily chosen, it has been a rich education, nonetheless.

Dr. Ray and I met through the National Pain Foundation. I had been honored by that organization at their Triumph Dinner in San Francisco where I received the 2008 Triumph Award, given to an individual living with pain who has made a significant difference in the lives of others. It was a wonderful honor, a Cinderella moment in my life, and I believe such a dinner and award marked a sea change in the way chronic pain is acknowledged and addressed.

First, it indicates a general consensus that chronic pain is real, even though it can’t be captured, photographed, or pinned down. And it shows that we are seeing chronic pain as its own category, not treating it as something that tags along with rheumatoid arthritis, lupus, Temporomandibular Joint Dysfunction (TMJ) and Physician Assistant (PA), neurological disorders, and the rest. Chronic pain can stand on its own, regardless of its origins.

The Triumph Award says to me that we are not just physical beings, not just systems. That we are complex individuals and attention must be paid not just to our bodies but also our minds, spirit, and emotions. Our illness is not our identity. Its failure to leave the body isn’t a failure on the part of the “patient,” doctor, or medical community.

The award also recognized that as a person living with chronic pain, you can look at the life you have today and accept it, even embrace it. You can refuse to give in. You can abandon your fear, cherish the moment, and embrace your life. Of course, it is not the life you wanted, but it is life nonetheless. I owe a huge debt of gratitude to the doctors and everyone in the medical community who pulled me through and saved my life.

I love a challenge, and I certainly got one. Sometimes, that challenge is getting up in the morning. But with pain and fatigue, you have to manage. You go to work, you cook dinner for your family, you may run a company (as I do with my husband), you hang onto your integrity, and you do the best you can. And then you do more.

I believe the Triumph Award legitimized living with chronic pain.

I’m saying this because the reality of pain is not sharable. There is no Vulcan mind meld. I can tell you my pain, but you can’t measure it, and you may not even believe me. You may think I’m there for the drugs. You may think I am a big baby. It happens all the time.


Smiley Faces Pain Chart


We seem stuck in preschool when dealing with pain. In doctor’s offices right now, we are still pointing at numbered emoticons—round smiley faces that turn to frowns and then tears—to rate our pain level. You don’t know how badly I wanted to have a pain tolerance test—hook my skull up to electrodes and put my hand in a vice—so we could both know what my pain tolerance is and what my pain level means. So I will be believed, perhaps even respected, for what I am battling daily.

My pain began as result of a rampaging immune system that attacked my blood, liver, brain, heart, lungs, and kidneys: systemic lupus erythematosus. A teenager alone in a hospital room far away from family and friends, I asked a doctor how long I had to live. He said if the disease continued to progress—4 years. I believed him. My own godmother lost her daughter at age 14 to lupus. Back in 1977, lupus patients with blood, heart, liver, brain, muscle, and joint involvement didn’t live long after their initial diagnosis. Perhaps the fact that it took most patients-years to get an accurate diagnosis contributed to that high mortality. In fact, my doctors had to do an about-face from searching for an infectious agent or parasite, to looking at lupus.

Lupus is like a roller coaster. In the first year, I kept track of the times I was in the hospital—seven. After that, it wasn’t quite as important. I’ve had joint pain and swelling, fever, enlarged spleen, hepatitis, encephalitis, pleurisy, pericarditis, myocarditis, nephritis, and gastritis—a long, long list. At this point, I haven’t been in a hospital in years.


A New Source of Pain


But if the crushing fatigue and body aches and pains of lupus were not enough, a rare reaction to the drug Compozine took things to a much higher number on the smiley face chart.

While hospitalized at age 22, this time for gastritis, an injection of Compozine triggered violent spasms in my jaw, face, and mouth. My eyebrows froze in a freakish look of surprise. I couldn’t speak, and my tongue became ridged and pointy. Then my jaw started sliding back and forth with such force that it dislocated. I was terrified. When the nurse came into my room, she took one look at me and ran out of the room yelling. Looking at myself in the mirror, I thought, hey, maybe I’m actually possessed. Maybe that’s what this has been about from the beginning!

The nurse came back with a doctor, not a priest, and gave me a shot of Benadryl. The news spread across the hospital about my reaction, and in moments my room was crowded with nurses, doctors, and orderlies all wanting to take a peek at the spectacle. They had heard of this reaction, but no one had witnessed it firsthand. I felt like I was in the zoo. After the shot, the nurse did tell me what was going on. She said I had a rare drug reaction and I would get better. About 8 h later, the whole ordeal repeated. My jaw started to skate back and forth, and this time I heard snaps and pops. After more Benadryl brought things back to normal, my jaw remained permanently locked shut. I now drank my meals through a straw, and suffered agonizing headaches, before eventually receiving bilateral jaw implants.

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Oct 21, 2016 | Posted by in PAIN MEDICINE | Comments Off on Patient and Caregiver’s Perspective

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