The metaphor, Personal Health Journey, works for me. We’re heading somewhere for health whether on purpose or not. We’re never actually there. It’s continual – until it isn’t. Sometimes we have a map, sometimes we don’t. Map or not, we’re still heading somewhere: work, the grocery store, our in-laws, the beach. There’s always decisions to make on a journey: stop for gas, rest, sight see, go left, go right? Same with the health journey.
The journey is different if we’re well, acutely ill, chronically ill or dying. Our aspirations are different. When we’re well we either don’t think about our health or we want to stay well. When we’re acutely ill (now we’re a patient), we want to get over it. When we’re chronically ill we want to live the best life possible. When we’re dying we want to live as long as possible or live as best as possible OR both. The journey is different, too. For the well it’s Inertia or Select Personal Health Goals-> Act and Track->Deal with symptoms when they arise. For the acutely ill it’s Symptom->Diagnosis->Treatment->Recovery->Back to Well or on to Chronically Ill (thanks to John Mitchell at Applied Marketing Science). For the chronically ill it’s Disbelief->Grief->Get help (care and treatment)->Recalibrate->Maintain->Give back->Relapse (and back again). More
I’m celebrating that I’ve finally learned an effective stretch for my hamstrings. Thigh and calf Charley horses and foot cramps have disrupted my days. My low back’s been hurting for several months caused by this tightening and cramping of my quads, hamstrings, calves, and feet. It’s become hard to sit for more than 15 minutes. I bought a standing desk, next to my sitting desk. I’m paying attention to ergonomics, learning to type (I’ve always been a hunt and peck kind of guy). My chiropractor and massage therapist attribute these muscle cramps to changes in my walking caused by the MS and wearing an ankle/foot orthotic. The Charley horses are the worst. I’m learning that there’s nothing straightforward about stretching. I’ve been stretching for months with very short-term relief. All of a sudden on a road trip this week, stopping at every rest stop to stretch, it kicked in! It’s not about stretching, it’s about relaxing. Standing tall, pelvic tilt, bending at the waist, relaxing. A meditation. I can feel the hamstrings and calves responding. Exciting! More
I love hearing, That’s a great idea! I’ll try it. I’m delighted when I say it. This week my chiropractor said, You need more hydration, try drinking one more glass of water this week, and two more next week. I’m tickled when I counsel someone and they say Great idea, I’ll try it, as happened this week. I spoke with a friend with a rare disease in a new community, Maybe you could focus next on building a new care team, Those are making a difference of one.
There’s another thrill to being a good leader and making a difference for a team: Family first. What do you need to get the job done? What do you recommend? We’ve got to have fun doing this. Some make a difference for communities, nations, the world with products and policy. For example, Obamacare provided health insurance for 20 million people; the Internet allowed virtual supportive communities to form. And there’s in between, as when a client says That’s a great idea to my proposal, we could use this platform to promote caregivers’ coaching each other and the caregivers could earn some money at it? More
I crave connection and respect. Not crave as a thirsty man crawling toward a mirage of water in the desert or a person constantly begging others to fill an overwhelming desire that can never be filled. Rather a need that sustains me and renews me. Connection and respect fuel my inner fire so I can meet the challenges of life, continue to contribute, and have space to be curious. It helps that I’m an extrovert. Connection and respect don’t cost much day-to-day, yet they’re long term commitments and investments. Connection and respect can be tough to sustain. I get crabby and self-centered, especially when I or someone I care for is sick or stressed. Then being an extrovert doesn’t help. Yet banking the investment of connection and respect pays dividends.
I’m impressed with how difficult it is to ask for help. We have as much difficulty responding to offers to help as asking for help. When our boy, Mike, was dying, people came out of the woodwork, offering to help. How to respond? How awkward! We had to add it to our weekly family care management meetings. What do we need? What do we say? Well, we didn’t think we needed much that those offering help could do. So we said that we needed food, companionship, transportation. We always needed a laugh and prayers. Caring helped. More
I’m not a complainer or worrier-at least not often or for long. Comparatively, I have little to complain or worry about. Yet, this week I struggle with pneumonia, try to regain strength, not hurt myself coughing and not being a jerk or a burden. I’m also turning 65 and enrolling in Medicare. I keep dwelling on the amount of effort it takes to be or support someone who is sick. What is that effort? I’ve come up with six questions anyone who is worrying asks themselves. You’ll see in the pie chart below that I’ve arbitrarily assigned a percentage to how much I think most people worry about each question. (No science here, no evidence, just my thoughts)
Who benefits from the murkiness of finding the prices of prescription drugs? Clearly not patients and caregivers.
Today, I’m taking two potentially lifesaving drugs – azithromycin and rituximab.
According to GoodRx.com, azithromycin, prescribed for my pneumonia, has a cash price of $35 with a $10 copay cost to me. Took me 10 seconds to find this.
I’ve spent more than four hours and I still don’t know how much the rituximab, a chemotherapy infusion for my multiple sclerosis, costs or will cost me. I’m turning 65 next week and I need to select a Medicare Advantage Plan. I spoke with several insurance companies. None can (or will) tell me the cost of Rituximab to them or to me. They differ whether it’s a formulary drug (covered at all). They differ whether they consider it a drug covered under Medicare Part D (see below) or an infusion, covered under Medicare Part B. If Part B it may be included in my premium.
This week I connected a patient with expertise in billing with a patient at the tail end of chemo struggling with huge unexpected bills. I introduced a cancer survivor with web design skills to a patient advocate setting up a new blog.
I’m struck by the breadth and depth of professional skills I encounter as I explore e-patient communities. (e-patient: empowered, engaged, enabled, equipped). e-Patients have lived experience. I encountered the concept of lived experience first while working in the mental health world. According to the Mental Health Coalition of South Australia (MHCSA) a lived experience worker is “a person who is employed in a role that requires them to identify as being, or having been a mental health consumer or carer.” More
We celebrated a 100th birthday around my Aunt Kikke, born during WWI in the Netherlands. She interrupted medical school and then emigrated to the US when the Nazi’s invaded. She couldn’t get into medical school here because she was a refugee, a woman, and a Jew. She was finally accepted to Johns Hopkins Medical School on Albert Einstein’s recommendation. Yes, that Albert Einstein. Aunt Kikke, Kato van Leeuwen, practiced as a psychoanalyst through her 90’s. The US has thrived throughout its history from the inspirational careers of refugees and immigrants such as my Aunt.