Abilities changing. Can’t play my horn. Acute pain on top of chronic pain. Need new solutions. Right-sizing virtual and in-person visits. Maintain optimism.
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The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee.
Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger
Web and Social Media Coach Kayla Nelson @lifeoflesion
Duke Ellington’s Caravan is played by Lechuga Fresca. Ryan Vasios, alto sax, Josh Rosenstock, bass, Karen Welling, keys, Andrea Cowen and Danny van Leeuwen, percussion
Photo used by permission from Diana Beidler Simonton
Inspired by and grateful to Sarah Anne Shockley, David Edwards, Penny Cowan, Melisa Reynolds, Cynthia Covert, Casey Quinlan
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About the Show
Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this.
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I haven’t been able to play my baritone saxophone for a few weeks. I’m bummed and worried. I often speak about my health goals: progress as slowly as possible, don’t fall, don’t mess with my pathological optimism, and continue playing the baritone saxophone. I haven’t been able to play due to issues with my back, decreasing mobility, and the weight of the big 25-pound horn hanging around my neck. I’ve been playing an average of an hour a day for the past 18 months. The more I play, the more equipment I accumulate and lug around. One place I rehearse weekly has 2 flights of steep steps. It’s been getting more difficult and riskier to climb those stairs. I know that I could get band mates to haul equipment for me. That’s not the problem. I haven’t been able to stand and play for 15 years. I sit. But I spent the last couple of weeks not able to sit for more than 15 minutes at a time. If I can’t sit and hold the sax with a shoulder harness, I can’t play. What are my options? I could play a smaller instrument – clarinet or alto sax, but I love the bari. Playing the bottom resonates in my soul and in my bones. My sax teacher pointed me to a bari sax stand made in Germany that will hold the sax while playing without a strap. Hopeful that works, but it’s more equipment to lug around.
Sarah Anne Shockley of The Chronic Pain Companion blog and website fame published a nice six minute video this week with nine approaches to managing chronic pain. Timely for me. Is this new thing acute pain on top of chronic pain or new chronic pain? Too soon to tell, yet these experiences allow me to self-examine, re-examine my approach to managing pain. I’m disturbed that none of the tools in my toolbox seem to work. No, that’s not true. Massage, chiropractic, and acupuncture focused the pain that started as a debilitating cylindrical trunk pain and transformed it to a more localized mobility interrupting pain. Ice helps more than heat. Owning the pain, becoming ‘friends’ with the pain, work the edges of the pain, resting when able, keep moving, etc. etc. Good news I have tools, but I do need some new ones.
How do we adjust as our abilities diminish – with pain or without pain? How do we put a value on doing what we love? Can I put a value on playing the bari sax? Can a runner put a value on marathons when exercise tolerance lessens? Will problems playing the sax impact my pathological optimism? I’m fortunate that I live with an occupational therapist and have a top-notch physical therapist. They help me adjust and adapt as my MS progresses. I’m wired for adapting. It’s my superpower – accept what is and adapt. Still – it sucks.
It’s interesting to watch my wife and I alternate freaking out about these changes in abilities. Is this temporary or a permanent progression? What does it mean for my independence, our plans? Thank goodness we don’t often freak out at the same time. I can see that additional caregiving is a stressor for my wife although she appears to go with the flow in pretty good humor. Occasionally, that stress leaks out. I learned from a grief counselor the importance of managing the stress you can manage so you can handle the stress you can’t manage, like grief, like progression, like pain.
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I’m trying to find a cause for my pain and lessened mobility? Is it neurological, MS, or is it musculoskeletal? I’m fortunate I can count on my PCP to dog this until we have a cause, a diagnosis. Yet, so far, we’ve only met about this via portal chat and virtual visit. Nothing in person. I will be meeting with one of her colleagues this week for a physical exam since she alternates weeks for virtual and in-person visits. We still experiment with virtual, a doubIe-edged sword, when to use virtual and when not? I continue my amazement at the range of issues family practice clinicians contend with while low specialist on the totem pole – less time allotted, less reimbursement, less recognition.
Lechuga Fresca, the Latin Band I play with rehearsed on my patio a few days ago. I played percussion – claves and maracas. My mates exclaimed that I still smiled and laughed despite the pain and not playing my horn. My superpowers endure, most of the time!! May that continue. May this be temporary. May this be acute, not chronic. If not, may I adjust. Onward.