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magic lever

A magic lever to best health – data and information

By Advocate, ePatient, Informaticist, Leader
I work in a human services agency.  We support individuals with disabilities. We help people achieve their hopes and dreams in their communities. One of our strategic activities is to increase the information available to the persons we support, staff who support them, management who  supervise staff, and our funders. The information helps us all keep a pulse on how well we’re doing and improving and alerts us to areas of risk to individuals we support, staff, and the community. Providing meaningful information that can be acted upon has its challenges.  Meaningful information comes from trustworthy data that represents real life work and wellness. We subscribe to the Triple Aim of improving individual well-being and experience; improving the health of the community; and improving the value of the support and care systems we provide and use .
We find ourselves either drowning in data that doesn’t inform us nearly as well as we’d like or lacking information about areas that seem critically important. Imagine being in an ocean of data and not being able breathe. No learning, no wisdom, just soaking wet. We think that people are dying too young, that they could be healthier, happier, and more fulfilled in the community.  We think that support could be better coordinated and that people could be more drivers of their own health journey. We think that we spend too much money on expensive care and that we are often penny wise and pound foolish. How do we know? When will we know it’s getting better?
This begins a series of posts about our challenges with data, information, insight, and action. Possibly a drier topic than some of my recent posts, but it’s my idea of fun – it’s a magic lever to best health.

Take a break – now

By Caregiver, Consumer, ePatient, Family man
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?

Values for Managing Health

By Advocate, Caregiver, Clinician, Consumer, ePatient, Family man, Informaticist, Leader
As I transition out of this episode of my life with the passing of my mom, I’m reflecting anew on being a blogger, Health-Hats, who is discovering the magic levers that impact best health. I’m back to values – what’s most important to me as an e-patient, caregiver, nurse, leader, informaticist, and family member. Anyway, what do I value? In alphabetical order, as my priorities change minute to minute

Who’s your health co-pilot?

By Advocate, Caregiver, Consumer, ePatient, Family man
As an e-patient advocate, I passionately believe in each of us being the pilot for our own health flight. So many legs in that health flight. While its a non stop flight for each of us from birth to death, it’s actually a journey with innumerable hops. As I re-enter my own health journey with energy now for others’ journeys, I’m struck by the shifting prominence of health team members. Sometimes we need a health team member to be our co-pilot, someone to take the wheel, read the map, or pave the way. A friend this week had an unwelcome and unusual constellation of symptoms – disconcerting, disruptive, freaky. This friend needs a co-pilot – a doctor to advise, diagnose, refer, integrate results. I had sudden acute abdominal pain.  I also needed a co-pilot. As my mom was dying we needed several co-pilots: a hospice nurse to manage symptoms and equipment; a friend to manage logistics of care; and a mid-wife of dying to manage personal care and spiritual needs. Another friend is trying to lose weight. His co-pilot is a trainer. Ultimately, you can’t always be a solo pilot. Recognizing the need for a co-pilot, finding one, and trusting her/him is a magic lever of best health.

Grief in passing

By Family man
My son, Mike Funk, would have been 38 yesterday. I miss him. Mike had a hard young life and came into our lives wounded with spirit, charisma, determination, and wackiness. The terminal diagnosis came shortly after finding love in his life. So thrilling, so sad. I’ve been blessed with an appreciation and curiosity about death and dying, so we explored the mysterious adventure together for almost a year.  Breath taking stuff. Yes, he suffered from pain and grief watching his carefully cultivated physique melt into a prednisone balloon. He was disappointed that he’d never have kids. He never said, why me? Rather, I wasn’t born with a tattoo on my ass telling me how long I’d live. Lord, I miss that guy!  Monster hugs, prodded me into the music world, If you want to be a musician,you gotta play. 

Mike shared his soul with us, still shares his soul with us. Bittersweet, bittersweet. To get a taste of someone’s soul, you need an open, receptive heart. The challenge of an open heart is that anything/everything passes through-the joy, lust, humor, pain, fear, disappointment. Not just of the moment, but of all stored history. Scary and exhilarating. Oh, Mike, we feel it all, we love you.
Grief is an inevitable lever of health.


By Caregiver, Consumer, ePatient, Family man

Limits. Spending time this weekend with friends of 30-40-50 years – lots of young kids my grandsons’ ages in the mix. Watching the constant shifting dance of setting limits, testing limits. Children cutting their teeth on their parents and grandparents. Also observing us 60 something oldsters bumping up against our physical capabilities – joint disease, surgery, acute and chronic illness. How long can we keep up the pace we’re accustomed to, how long do we want to? How do we maintain or extend our capabilities? I watch my 87-year-old mother, in pretty good health, slowly winding down, withdrawing from some social and physical activities. Limits – acculturation, recalibration, will. Limits impact community engagement, social connectedness – Physical access, relationships, conduct, opportunity. We respond so differently to limits – tantrums, frustration, anxiety, negotiation, determination, resignation, relief. A magic lever of best health: our response to limits.

Worry, a familiar & unwelcome companion

By Advocate, Caregiver, Clinician, Consumer, ePatient, Family man, Leader

Worry, a familiar and unwelcome companion on the health journey. What do I have? Will I have to adjust my life (further)? Can I keep the faith? Who will help ME? What have I missed? Can I do it all? Fretting weakens- stomach aches, binge eating, inattention, sleeplessness, short fuse-what a pain! Who, on the health team – person at the center, caregiver, professional – who that is alive avoids worry? It can fill the spaces between the cells. Worrying makes me mad. It saps fuel from my limited tank. What helps me lessen worry? More information, empathy, kvetching for a minute (a timed minute), getting out of bed, making a list, grandkids, music, meditating on my peaceful place, following a mentor/counselor’s instructions, change something in my life, rarely, a pill. How can I help lessen the sum total of worry in my teams and networks? I can recognize the signs, provide information, be flexible, listen, empathize, and offer small unexpected kindnesses. These are magic levers of best health.

Simple Gifts

By Family man
Last week a friend asked me, What’s your favorite song? So many went through my mind – really, my mind was paralyzed, I couldn’t think of any. So I said, Simple Gifts, the Shaker tune. We sang it at our wedding – after the ohmms. A question on the 41st anniversary of the day I met my wife. 41 years! We are blessed to appreciate simple gifts. Especially crawling between the sheets at night with each other. I love Jack Nicholson’s line to Helen Hunt in As Good As It GetsYou make me want to be a better man.  Simple gifts, a magic lever for best health. Have a good week.:)

That Sinking Feeling of Stress

By Advocate, Caregiver, Consumer, ePatient, Family man, Musician
You know that sinking feeling you get in the pit of your stomach when something is seriously wrong?  Often accompanied by inability to focus on the here and now (your music, your kids, your grandkids, your partner), trouble sleeping, mind racing? Happens when you get bad news, when someone treats you like crap, when you think you’ve made a serious mistake, grief. It’s the fight or flight stress reaction.  Today I got that sensation when I was playing my sax, trying to memorize a piece. I so struggle with memorization-always have-from the days of anatomy and trying to remember bones.  Anyway, I thought,why the heck am I feeling this stress reaction playing music?  I’ve felt it more often lately-stress at work mostly. It affects my sleep, I struggle to focus. It’s an energy sucker. I only have so much gas in my tank-I hate wasting it on this stress reaction. What can a person do? I’m not one that’s had success with meditation. There are some interesting tricks:  I do love the one of pressing on the space above my upper lip below my nose.  I think it’s so comical it helps for a second, but doesn’t last past the press. Focused breathing deeply always works, but again doesn’t last. Talking to someone, getting whatever off my chest occasionally works -and it lasts.  There’s compartmentalization, denial – I’m not too good at those either. My PCP gave me Ativan to take before I go to bed, but I haven’t tried it. Actually, just having it in the cabinet has almost eliminated my need for it. Powerful stuff, eh – proximity without ingestion. Stress is a part of life. Unavoidable, part of the human condition. The challenge is to keep the cycle short, less frequent.  How do people manage who have this sensation all day for days, weeks, months, years on end?  Must be crazy making. Managing stress is a magic lever of best health.