I feel awash with stories (nightmares even) of disastrous, frustrating relationships between people and their professional care teams. I listen with amazement and watch the hurt, the anger, the self-blame, bubble out, spew forth. Sometimes I have to sit sideways to protect my heart from breaking. At their best, relationships are partnerships. Partnerships can be a bitch in the best of circumstances. Yet, good partnerships make me high – the partnerships with my honey, my work teams, in music groups, with the anonymous one-time chance encounter and yes, with my health teams. Continue reading “Need a recharge? Listen for what works.”
Have you ever remodeled your kitchen? So many decisions: Cabinet style, drawers, finish, hardware, not to mention the floor and appliances. There’s you, your partner, a contractor, a cabinet person, a floor person, the appliance merchant. Decision after decision – should we or shouldn’t we? And nobody’s gonna die or get injured – hopefully. All while trying to keep living, cooking, dishes, lunches. My wife and I were so stressed. Kitchen decisions pale next to health decisions, especially medical decisions. It’s not like, “do I prefer this drawer pull to that drawer pull?” “Would I rather have wood or tile floors?” There is so much more uncertainty in health care.
Why me, why now? Who says? How sure are they? What if I do? What if I don’t? Will I still be able to ….? Who pays? What will they think? How do I get there? What aren’t they telling me? Are they listening to me when I say I can’t or I won’t? I just can’t think right now! Oh, this sure sucks! Continue reading “Should I or Shouldn’t I? Managing Uncertainty”
Harried caregiver: What are we supposed to do next? Instructions from doctors, just getting through the day, plus dealing with bureaucracy? My word, I’m so overwhelmed. Everybody thinks their thing is the most important. Can’t this be easier for my wife and me?
Recently diagnosed patient: I feel like crap. I want to follow instructions, I do. I thought I understood everything at the office. Now I’m home, how do I get my questions answered? Continue reading “Tales of Woe”
As a person with MS, I’ve written that my personal health goals are to progress as slowly as possible and do nothing that will mess with my pathological optimism. People I talk with about personal health goals say it’s not easy to come up with personal goals. What do I mean? OK, people who are well want to stay well. Those who are acutely ill (cold, broken leg, stomach ache, etc.) want to get over it. Those who have chronic conditions want to manage as best as possible. Here’s a stab at a list of personal health goals. Continue reading “Personal Health Goals”
As many of you already know, on January 7, 2017, Minda Wilson interviewed me on the URGENT CARE radio show. Here’s a link to the episode. I’m best able to open the interview MP3 file with Music Player for Google Drive. I recommend the show, URGENT CARE. Many good interviews of caregivers, patients, clinicians, and policy experts. Minda, a health care attorney, knows her stuff. URGENT CARE is one of many shows on Radioactive Broadcasting. Let me know what you think of the interview!
For those interested, here’s a link to my full 2016 Health Hats Report. Read it to know what I’ve been up to in this 2016 transition year. I’m grateful to all of you!
I’ve been feeling my oats in 2016 as an advocate and catalyst for Empowering people as they travel together toward best health. As my dear friend, Mary Sue said, Danny, you’ve found your calling! Wearing my many hats, I often feel like I know enough to be dangerous about much of healthcare. When I walk into a room of experts in their fields – clinicians, researchers, policy makers, techies, insurers, executives, I think, What am I doing here? I’m way over my head. It takes two minutes to understand that I’m the connector of their considerable expertise to the workflow and life flow of patients, clinicians, caregivers, and staff. I’m also the translator among their jargons. I can shift the conversation by offering a voice for some experiences of patients, caregivers, and clinicians.
I’ve refined my work this year as a connector, translator, and advisor while working as a technical expert in patient-centered research, behavioral health information technology, community health, and health payment innovation. I’ve benefited from the warm embrace of Wellesley Partners during this transition year after leaving my 40+ years as an employee and boss. I am grateful that they believed in me and helped me polish a few rough edges of inexperience. I also appreciate the counsel of many – Doug, Geri, Pat(s), Juhan, Bevin, Eve, Jarred, Keren, Jonathan, Sarah, and Lauren to name a few. You all know who you are. Thanks. I’m grateful for the many inspiring people in the patient/caregiver/clinician experience space. Thanks for all you do. You keep my embers glowing. Continue reading “Health Hats – 2016 in Review”
When you have 4 to 5 hours a week and $0 to invest, how do you move something an inch that needs to move 100 miles? I’m talking about the unhealthy mess of our US healthcare system. Most would agree that it’s a long complicated journey to health for our system. As clinicians, caregivers, or advocates we want to make a difference and alter the healthcare system for the better. So where do we invest our time, energy, and money? It’s sobering to realize the imbalance here – it takes a lot to participate in any kind of health journey – personal, team or system. We still need to take care of ourselves and our loved ones, do our day jobs, and wash the dishes. We can be pretty unrealistic – our eyes are bigger than our stomachs. Our desire is greater than our capabilities.
So, with 4-5 hours a week and $0 the best we can do is have a specific goal, assemble or join a team that’s fun to work with, make a plan, execute it, check if it’s doing what we want it to do, adjust as needed, and keep at it. And build bridges to people trying to accomplish something similar – learn from each other. It’s the same for caregivers, nurse managers, patient and peer advocates – anyone without deep pockets. It’s some variation of a few hours a week and $little to invest. Continue reading “4-5 Hours a Week & $0 to Invest”
My Note to Myself: Continue to do what I’m doing. Appreciate the small stuff (fresh running water, regular garbage pickup). Appreciate living within our means. Appreciate the warm rocks of my honey and my family. Appreciate my empathetic and skilled health team. Stick to my health and safety routine every day. Mentor bright young minds. Have fun when collaborating to do good work.
Three words: Balance. Caregivers. Onward.
Balance – Family, exercise, music, work. In that order
Caregivers – I do the work I do for caregivers – Honor the caregivers, help the helpers. We couldn’t exist without them.
Onward – Moving stuff an inch that has 10 miles to go, requires one foot in front of the other.
Happy New Year!!! Here we go – weeeee
So, I have new MS lesions. I’m weaker, less stamina. A 3-days of IV SoluMedrol (steroids) infusion knocked me out. I’m recovering. What will my new normal be? Once again, I’m grateful for my health team. It reconfirms for me that executing a continuing plan of care for self, health team self-care, and building a responsive, loving, skilled health team are critical priorities for best health.
I’m out of balance. Balance implies constant motion – seesaw-like. It’s almost never a steady state. Balance occurs occasionally naturally while going up and down. A balance needs space and time to recalibrate. To think, to reflect, to adjust, to meditate, to vacation, to take a deep breath. Sometimes balance is an active process – change something, add weight, take off weight. More time at work, more time with family, more music, more exercise, more greens. Sometimes it’s laying back, letting life play out, resting, and return to balance as part of the normal see-saw. I’m lucky that I have a low tolerance for being out of balance. I feel it acutely. I find it easier to be active attaining balance than to give myself some grace and let the balance return more organically. It feels better to be creating space and appreciating space. More optimistic, better spirit. Let’s see what happens. Honor caregivers. Help the helpers. Happy New Years, dear readers.
At year-end, I’m still on a mission to Empower people as they travel together toward best health. (Patients, caregivers, clinicians, direct care and support staff, communities)
- To understand and support each other
- To balance workload and capacity
- To achieve the best outcomes
- To communicate effectively during transitions of care
- To learn and share what works
These days more people in the health industrial complex listen to the voice of the patient, caregiver, and those others who care and serve. But the listening isn’t consistent. And the doing something sensible is sporadic and not often widespread. It’s gone from bleeding edge to just edge. I’m consumed with learning how to move this scary disappointing healthcare system an inch even though it needs to move 10 miles. I’m satisfied with the inch. The 10 miles is too much to fathom. I’m more aware than ever of having progressive conditions – MS and life. There’s a limit to what I can do. Continue reading “Recommit for the New Year”