OMG, I’m upgrading my website. I started the blog almost 5 years ago setting up the website with help from my friends Eric and Jodi (this is my 305th post). Now I want more from the website. I’m adding two pages: Portfolio to share my articles, guest posts, interviews, and projects. How Can I Help You? For topics we care about and related resources. I’m determined to create it myself – much like my wife and I built a house – seriously ignorant, reading instructions, tutoring, advice, and making significant mistakes while putting one foot in front of the other persistently. Learning something completely new is a frustrating gas. Frustrating until you learn a bare minimum of the language, get the right tools, building a support team, and finding the growing mindset of I can do this!? Frustrating when you mess up big time – like a couple of days ago when I unknowingly loaded 13 sample posts with my new theme and they went out to all of you looking like spam. (Thanks for letting me know and hanging in there with me.) A gas when you stumble upon or are pointed toward a solution, when you can find the solution a second time, when you can start to see the creation, and when someone else appreciates it. Gosh, this sounds like living or supporting someone with a chronic illness, living in another country or community, playing music, going to school, or starting a new job. Read More
OMG, where’s my wife? I need to be rescued. I can’t do this. I can’t be here. My pounding heart, my rapid, shallow breathing. I can’t be here. Where’s my Ativan?! Have I gotten bad news, a diagnosis, felt a lump? Am I bleeding? Have I fallen? Am I a stranger in the strange land of the medical industrial complex?
No, I’m on a Blues Cruise. I want to play the blues with other amateurs. They are the amateurs that are not headliners. They have blues bands of their own and play regular gigs wherever they live. I am an old, baby amateur. I’m the only horn player at this session. I don’t know the tunes. I don’t know what key they’re playing in. I am SO way over my head. It could just as well be a gaggle of 8-year old’s trading Pokémon cards. Read More
I play baritone saxophone in community Latin and blues funk bands. Our professional musician leader teaches us the language of music theory – this week it’s Minor Dorian and Lydian scales. As an amateur, I understand about a third of what he’s talking about. Still better than a quarter understood six months ago. In Washington this week I reviewed funding applications for PCORI (Patient-Centered Outcomes Research Institute). I serve as a patient reviewer. I made a point about the impact that the frailty of a person with congestive heart failure might have on readmission to the hospital. The review leader asked me if I meant xxxxxxxx (something about the methodology of the research study). I had to say, probably not, since I didn’t understand a word you just said. I understand about 2/3 of the scientific conversation at these sessions. I also take part in calls for OpenID HEART Working Group that intends to harmonize and develop a set of privacy and security specifications that enable an individual to control the authorization of access to RESTful health-related data sharing APIs, and to facilitate the development of interoperable implementations of these specifications by others. I still don’t really understand those words. I understand about 25% of the conversation, up from the 5% understanding when I started a year or so ago. Read More
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
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.
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 of 2015. Reviewing the year in 51 blog posts, we discussed:
- Death and Dying
- Give Me My Dam Data
- Work/Life balance
- Ignorance, Uncertainty, Research
- 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.
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.