Tag

music

Scared?

By | Advocate, Caregiver, Clinician, Consumer, ePatient, Family man, Informaticist, Leader | 3 Comments

My friend, Phyllis, in Cleveland suggested I might be asking the wrong question: “What works for me when I’m scared and what doesn’t?” You may recall that readers who have been patients and caregivers have been adamant that this is a key piece of information that should be in the electronic health record, especially needed in the ER. In 5+ years of advocacy I’ve been unable to generate interest from IT wonks. Anyway, I was whining about my ineffectiveness to Phyllis.

So let’s break it down a bit more. I’ve never met anyone in an unexpected health situation who wasn’t scared. Scared looks like: startled, numb, stomach ache, sweating, heart racing, catastrophizing , panicked……

It’s good to know in advance what helps settles me down. Deep breaths, meditation, hold my hand, a good laugh, quiet, a walk, listening to John Lennon, my wife and family, more information, respect from those around me plus listening to me, Ativan. My mom needed a hand to hold, control, opera. My friend needs someone from his immediate family and information, reduced stimulus, quiet, to be kept warm, headphones with classical musical. We all can use something. The unexpected health care situation can vary. My chronic condition, MS, could flare up – known yet unexpected.  You could break your leg – an accident plus pain. You could have a heart attack or kidney stones – sudden, debilitating, with pain. You could be alone or with someone you trust – very different scenarios. Read More

I’m So Discouraged

By | Caregiver, Clinician, ePatient, Family man, Musician | 7 Comments

Several times this week I heard a variation on: I’m so discouraged, I thought I was doing better. I just keep sliding back. I really suck at this. The topics: meditating every day, losing weight, managing anxiety, soloing, recovering from surgery. I heard each from more than one person. Several people said it about multiple things. One person, me, said it about losing weight and soloing. Two things strike me here. First, sucking and second sliding back. Can’t we give ourselves a break and celebrate that we’re trying? I’m trying to meditate every day, lose weight, improve my mental health, solo on my sax!!!! Yippee for me. Yippee for us!!! Recovering, healing, learning, changing habits doesn’t happen in a straight upward line, steadily better. It’s two steps forward, one step back. It’s up and down, first wildly so, then smaller cycles of up and down, over time with forward progress. Looking at just 2 data points only frustrates us, since we tend to recognize the down after the up, rather than the up after the down. In each of the scenarios someone heard the other and provided a good job, way to go, keep it up, keep me posted, call me anytime

I honor you’re work of healing, learning, recovering. Good job, way to go, keep me posted, call me anytime.

Disabled. Looking for Work. Reference

By | Advocate, Consumer, ePatient, Family man | 2 Comments

Here’s the reference I didn’t accept on LinkedIn:

He’s seriously annoyed with his disability, full of himself and his opinions and perceptions about life and health. Blogs every week whether or not he has anything to say. Can’t keep a job.  Has the attention span of a gnat, flitting from one thing to another. Needs significant help focusing and limiting the scope of his work. Moves way too fast, going for the latest shiny thing, tested, proven, or not. A major joiner. Set some limits for Pete’s sake. Sits on expert panels without real expertise in anything. Has to keep lists of books he’s read so he doesn’t read them again, but forgets to check his list. We’ve always done it this way is a red flag for him. He should shut up and listen for a change. Has a loose relationship with the truth. Would rather tell a good story. Needs a fact checker. Loves to say, God willing and the creek don’t rise. Where does he think he is? W Virginia?

OK, he’s sort of disabled. Takes advantage of his get-out-of-jail free handicapped parking placard. After all, he can walk a couple of blocks.   Frantically trying to stay healthy. Massage, acupuncture, chiropractic, counseling, meditation. Give it a rest already. Cut his foot with a chain saw when he was an ED nurse and paramedic. Then he went to his son’s second grade class to teach first aid  Doesn’t know the meaning of safety. A truly strange bird. Was in the movie, Woodstock, when he was 17, calling his mother. Now 63, he’s still a momma’s boy. Was in a Life magazine cover story, You’ve Come a Long Way, Buddy. Men’s Liberation. For real? Can’t lie to save his soul. Don’t know about diversity, he’s prejudiced against stupid people who can’t get anything done. Can’t stop talking about his grandkids. He’s a boring Johnny one-note. Thinks he can play saxophone.  Please!  Loves to dance – in his head. Who is he fooling? Pokémon illiterate. Just ask his grandson. Does laundry and takes out the garbage, but doesn’t cook enough. Leaves the entry way door open when it’s freezing outside.  Appreciates clean running water and weekly garbage pickup. Every week! Give it a rest already. Built a house with his wife without ever having built anything before. Lord, get some experience before you go off halfcocked. Won’t stop correcting lab technicians who ask him to confirm his birthdate that they read to him. Arrogant.  Still hot for the same woman after 40 years – get a life. Balding, needs a hat. Any hat, doesn’t care.

 

I know it’s tough to get a job as a disabled person.  But, hire this guy? Be very careful, count to 10.

Last Post, New Year

By | Caregiver, Clinician, Consumer, ePatient, Family man, Leader, Musician | 2 Comments

Last post of 2015. Reviewing the year in 51 blog posts, we discussed:

  • Death and Dying
  • Give Me My Dam Data
  • Values
  • Leadership
  • Work/Life balance
  • Grace
  • Ignorance, Uncertainty, Research
  • Music
  • Caregivers
  • Experience of People at the Center
  • And more

I’m looking forward to the adventure of the new year: Maintaining my health, contributing to the experience of we people at the center, playing the blues, watching my grandkids grow, hearing from you.

From Mark Twain:

  • All you need in this life is ignorance and confidence, and then success is sure.

Amateurs Among Professionals

By | Advocate, Caregiver, Clinician, Consumer, ePatient, Musician | One Comment

I play in an amateur blues funk combo. Yesterday we had a gig at a local Jazz club. Hear it here. We played in a lineup of 9 amateur community bands,  each led by a professional musician. An entrepreneurial professional created more than 20 such groups,  Morningside Studio. All of us aspiring musicians have a chance to advance our musical dreams. Already quasi experts in our instruments (also taking individual lessons), we’re learning about making music as a team.  It got me thinking about health care. The vast majority of people and caregivers are amateurs gigging with professionals. Unlike the musicians, most have no interest in health care, just there because they have to, gone when they don’t. Others have great ability in their own instruments, their bodies, learning about working with a health care team. Some health care professionals are good team members. Others are not. Some are good teachers. Other not so much. Even the professionals are amateurs when it comes to their own health. For the most part, the only professional patients are those with chronic illness.

I’m struck by this constant challenge in healthcare: amateurs and professionals working together with that toxic overlay of big business. Can I learn anything from the combo experience? Well, I can leave a group if I’m not simpatico with the professional.  I can usually leave my clinician if we’re not aligned, but it’s much harder. I learn as much from fellow amateur musicians as I do from the professional. I learn much from others with chronic illness, multiple sclerosis, and others fine tuning their lives and their health. I look for one pearl a session from the professional musician. I’m delighted when I see it. Same with sessions with health professionals. Arrogant distracted professional musicians are a drag.  Arrogant distracted health professionals can be dangerous.  It’s a matter of degree.  Hat’s off to amateurs learning to work with a team.

Mistakes – Finding your Groove Again

By | Clinician, ePatient, Family man, Musician | No Comments
We make lots of mistakes improvising while playing music in my jazz combo – wrong notes, lose our place, no feel for the rhythm. No mistakes never happens. The music is good when the group communicates, recovers and finds the groove again. There is never no mistakes on the health journey.  Mistakes range from missed doses, added pounds, underwhelming exercise, and falls to unhappiness, crabbiness, and misjudged  function. Something hopeful doesn’t work, something makes you sicker.  It’s the human condition – mistakes. Expecting no mistakes is unreasonable. (I’m not talking about never events – wrong sided surgery, neglect, hubris, disrespect). Health can improve when mistakes are recognized and communicated. Lessons can be learned, something else tried.  We find the groove again.

Adjusting to new chronic illness

By | Advocate, Caregiver, Consumer, ePatient, Family man | No Comments
Adjusting to new chronic illness involves moving away from traditional medical/doctors/health care system to controlling controllable stress and recalibrating function.  “Eventually, you adjust to a new normal,” says Lisa Copen, founder of Rest Ministries, Inc.  Controllable stress takes many forms – toxic relationships, fear, anxiety, impatience, sleeplessness…. Managing those stresses creates space and reserves to manage uncontrollable stress – grief, new meds, less abilities, etc. Getting help managing toxic relationships has out-sized impact.  Toxic relationships wear you down, drop by drop. Counseling can help here. Meditation and yoga pair well with impatience and anxiety.  Have fun: when I got my multiple sclerosis diagnosis I had to redouble my efforts to have fun – more clearly defining what having fun meant to me and including fun as part of everyday life at home and at work. Spending time with my honey and my family, playing music, reading, making a difference, mentoring. Recalibrating function – adjusting to the new you: Physical or occupational therapy can help to manage changing abilities to carry out activities of daily living (meals, elimination, movement, dressing, chores). Community services can help with transportation and family support, among other things. We often expect that the traditional medical/health care system should help with stress and function. That’s not their core business, they’re often not good at it. Those with new chronic illness need to look elsewhere and add to their health team. Right now, insurance doesn’t pay well or doesn’t pay at all for controlling controllable stress or recalibrating function. Maybe that will change as incentives move from fee for service to capitation (paying separately for each service to paying a set amount per person).

Take a break – now

By | Caregiver, Consumer, ePatient, Family man | 5 Comments
Today I’m bone tired. Tired of grief, tired of having MS. Interesting how physical health and mental health go hand in hand. Medical challenges weaken our reserves, at the very least make us crabby fearful, anxious – tired. Medical challenges drain our ability to coördinate, think critically, advocate for ourselves, have perspective, when we most need these skills. Mental health challenges can make it harder to identify – even mask – and work with medical issues. How do we rejuvenate from being run down from physical or mental ill-health? How do you take a break-get some rest? I find that small things help – wear the brightest bow tie when I feel the worst, have a piece of chocolate, cuddle with my honey, take 5 minutes to bitch and moan, drink lots of water, take a power nap, listen to Paul Simon’s Graceland, enjoy smaller meals, laugh, cry, or sigh, eliminate manageable stress, exercise, get a massage. What works for you?

Sounding like yourself

By | Caregiver, Consumer, ePatient, Musician | No Comments
Two musical events for me yesterday: my combo rehearsal and Victor Wooten, Steve Bailey, JD Blair, and Derico Watson at Berklee School of Music. The latter, 2 virtuoso bass players and 2 amazing percussionists, demonstrated energy, experimentation, creative inclusion of the audience, and remarkable unspoken communication among themselves. My combo – not so much. Some of us have played together for 2 years – rank amateurs. Yesterday, a new drummer joined us: we are piano, bass, trombone, and Bari sax. We all listened to each other, but none of us  quite followed the tunes’ form, so there were  conflicting cues, frustration, and much verbal communication. We kept at it, and actually improved some over the 90 minutes. My sax teacher has me working on the basics: chords and scales. Don’t worry about the improv, it will come. I do angst about the improv, constantly criticizing myself.  I hate it when people criticize themselves. I left the Berklee concert, thinking that these musicians sound like no one else and they are unafraid. I certainly sound like no one else.

What do I extract from these experiences for the health team’s journey? 1. Listening isn’t enough, there needs to be a solid frame and 2. Sounding like yourself is good enough. The frame for a health journey comes from the person at the center of care. If listening to each other still feels confusing or disjointed, revert to listening only to the person at the center. Every health journey is unique-some polished, some not. The choices we make work out or don’t. Harping on being right or being good doesn’t help us move forward.

Listen to the music

By | Caregiver, Clinician, Consumer, ePatient, Musician | No Comments

Yesterday I played in a recital with my jazz combo-dedicated amateurs. Musically we have greatly improved.  The devil is in the arranging. Who plays when and where, in what order. Trying to get it right one player sent an email to everyone with the arrangements. We rehearsed one last time in the morning, making a few changes. He sent the revised arrangements out just before the gig.  I printed and didn’t review. One tune was a complete disaster.  The changes were not what we agreed to, I was the only one that printed the changes.  I noticed the discrepancy in the middle of the tune and chose to play as written, not as I remembered what we agreed to. I messed everyone up, the tune fell apart. Disappointment, irritability.

Alignment is tough in music and in health.  Everyone’s talent, passion, and goodwill goes up in smoke when the alignment / arrangement isn’t there. How do we align in health care?  The person at the center and their team knows and agrees on the goals and the action steps. They communicate the inevitable adjustments as they occur. A small tight group that plans is no guarantee that the alignment will hold. Sort of surprising that we expect it to be smooth or flawless. Sometimes if we listen well and hear the mismatch we can adjust and realign and sometimes we can’t. Listening. Anyway, three out of four tunes sounded great. I guess that’s not too bad. But it’s not my health.