A Fireside Chat With Pain
For the last two years, I've suffered in silence because as a transplant recipient, a common misconception is that my life is remarkably blissful. Sickle cell pain is out the window, you morph into the energizer bunny, and overnight, you're superhuman because of a medical miracle but don't forget all that glitters isn't gold!
Life and expectations
The analogy I'm about to share might not be apt, but it's the closest thing I can think of, so bear with me. From the moment we are born, important life lessons are passed on - work hard, get a job and find a partner - but what they fail to teach us is what happens next once we've achieved these feats. No one really breaks down the nuances of each situation - hard workdoesn't equate to instant success, you may encounter a horrible boss or a challenging work environment, and marriage is not the be-all, end-all in life.
In the words of Forrest Gump, "My mama always said life is like a box of chocolates. You never know what you're gonna get." The simile in that quote is that life is full of surprises; you never know what will happen next but let's circle back to the primary focus of the article.
An ongoing battle with avascular necrosis
As I write this piece, I am trying to power through bone pain in both shoulders that's caused by avascular necrosis (AVN). AVN or osteonecrosis is a debilitating symptom of sickle cell disease that is often triggered by the temporary or permanent loss of blood supply to the hip or shoulder joints.
Picture this - When sickled red blood cells stick together, they cut off the free flow of blood and the bone tissue starts to die. These tiny breaks in the bone can collapse as the patient continues to age. Desperate to alleviate pain, I have tried everything in my chronic pain arsenal - ibuprofen, yoga, physical therapy, heat, Epsom salt baths, and of course, prescription pain medications. But, speaking candidly, the relief isn't enough to take my mind completely off the pain. Imagine having a toothache and trying to drive or write a term paper; it can be challenging because that aching tooth pain is just unbearable.
Finding humor in unlikely places
Drawing inspiration from another patient advocate, I wanted to humor myself and help you understand what I go through by staging an interview with my chronic pain. Ironically, she and I are long overdue for a tête-à-tête, so I thought I'd share the transcript of our fireside chat using this 4-step approach.
Step 1: Set a stage for the interview
Step 2: State the meeting agenda (i.e., list concerns and indicate all needs)
Step 3: Discuss pain symptoms
Step 4: Review existing treatment plan and figure out pain triggers
Step One - Pain Psychology
Me: I want us to talk so we can figure out what's going on.
Pain: Sure. What's on your mind?
Me: We've been in a personal relationship for a very long time, and I want to be free. It kind of feels like I'm the slave to you.
Pain: That's untrue. You've given me a good home, and we have fun together.
Me: We don't have fun together! You show up at the worst times and steal my joy. Before the transplant, I experienced bouts of pain episodes, and after transplantation, I'm still dealing with pain. Will it ever end?
Pain: I don't know. What I do know is it's your life and your journey. You can choose to take back control and become the master.
Step 2: Pain biology
Me: I want to understand you. So tell me, why do I feel intense pain in my shoulders?
Pain: You feel pain in your shoulders and hips when specific nerves called nociceptors detect tissue damage and transmit information about the damage along the spinal cord to the brain. I'm not here by choice; I only show up when I'm summoned by the cerebral cortex of your brain because pain triggers a variety of reactions in the body.
Me: What type of pain is this?
Pain: It's nociceptive pain that arises from the stimulation of specific pain receptors. These receptors respond to heat, cold, vibration, stretching, and chemical stimuli released when tissues are irritated or injured. Some examples of nociceptive pain are sprains, inflammation, and bone fractures.
Step 3: Dimensions of pain symptoms
Pain: What areas hurt? Which spot is the most sensitive?
Me: Most of my pain is in the bone and joint. It literally feels like I'm carrying the weight of the world on my shoulders. That intense pain radiates down my upper arms and feels warm to the touch.
Pain: What makes the pain worse, and when does this happen?
Me: Most mornings, I wake up in excruciating pain, and any sudden/unsupported movements seem to make it worse. On the pain severity scale, I'd say 8 out of 10 with bone pain that is aching and throbbing.
Pain: Don't forget that each day, you get up, take pain meds, do a yoga stretch and move on with planned activities. Give yourself grace because you are able to push forward with your lifelong goals. When you cry, I cry with you, and sometimes that increases the intensity of pain.
Me: Thank you for acknowledging those small victories. I'm often consumed by fear because I've witnessed the negative impact of pain on personal relationships. I know that I'm the captain of this ship, but pain makes me feel helpless.
Step 4: Pain history and treatment
Pain: I want to understand you so we can work together. Tell me more about your pain history?
Me: Besides the pain crisis, I've struggled with lower back pain, acute chest syndrome, severe joint pain in the right hip, and osteomyelitis. There are functional and psychological aspects to my complex pain history with corresponding treatment plans.
Pain: You are probably dealing with some long-term consequences of chronic pain that negatively impact multiple aspects of your health. Pain can affect your sleep cycle, cognitive processes and brain function, mood/mental health, and overall quality of life.
Me: I need to take back control. How can we work together on a treatment plan?
Pain: We can minimize your pain using a multimodal treatment strategy that can control the intensity of this pain. Schedule a visit with your physician - discuss pain symptoms, their impact on your activity function, and new treatment options. I know you will get through this because you are so strong.
Me: Thank you and goodbye for now.
Do you have posture issues as a result of your disease?