I’m So Discouraged

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.

Screen-Free Sabbath

Week 3 of my wife and my Screen-Free Sabbath. Feels pretty good. After the first week it feels like a relief.  I’m reading more books – paper and not Kindle. Turned off my e-mail and social media notifications. They were all still there at sundown Saturday. No emergencies. Sitting still more often – some alone, some with my wife.  Got my recumbent trike out, tuned up and rode it. Had to buy some paper Sudoku books. It affects my week as well. I’m looking at the phone less often, meditating more. Still using the iPhone for texts and phone calls-have only received a few. Using it when playing my sax: playing my recorded rehearsals, metronome, etc. Sitting on the bus or subway more often looking at people and not the screen. Noticing the blue sky and spring colors. My grandson freaked out: Will I have to do it too? All week? OMG. He’s relieved that it’s just Grandma and Opa and not him, unless he’s at our flat sundown Friday to sundown Saturday.  I’ve spoken to several parents who have 5-7p screen-free every day, others do a 24-hour period as we do.

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Experiences, experiments, reflection, action

This week people told me stories about a moment in their health journey – Symptoms, people, relationships, procedures, thresholds, feelings.  Completely fascinating, inspiring, and gut wrenching windows into life’s challenges and tragedies. I heard,  I’m worried, the surgery worked, I can’t find a clinician who listens to me, my condition recurred – worse, my family’s supportive and grieving, how will I manage my job, I fell, my mother went into assisted living  (all from different people). Other people told me about work they’re doing – research, businesses, experiments.  I heard, let me tell you about the study I’ve been doing about multiple sclerosis, I’ve learned a lot about the stages that a person goes through as they gather information about chronic illness, I’m helping people succeed in their startup, I’ve found 5 people who have had the same success managing their chronic fatigue.  I read studies this week about reducing opioid use,  predicting resource use in chronic illness,  and improving the ability of individuals and clinicians to communicate and set mutual health goals.

Actually, this is a normal week. Experiences, experiments, reflection, action. All tie together. Each necessary, none sufficient.

A caregiver is [not] a caregiver, is [not] a caregiver

When my mother was dying I was a long distance caregiver.  My mom made her own decisions, shared them with us, sought advice from me, asking me to research meds and treatments, wanted help with scheduling, wanted me to attend some of her appointments with her (mostly by phone) and gave me access to her electronic health record. Our family had open and dynamic communication. I was the health coordinator, my older sister helped manage business, my younger sister was her companion. These roles evolved over the years and solidified as our mom declined. Continue reading

Engaged with Sax

Shopping for a new neurologist I had three screening questions:

  • What’s your response time to emails?
  • Do you use OpenNotes?
  • How would you work with my acupuncturist?

The first doc said, ‘I don’t use email, we don’t have a portal. What are OpenNotes? What do you mean you’re shopping for a neurologist? You either want me or you’re wasting my time.’ 

The second doc said, ‘If you email me, my nurse practitioner or I will get back to you within two business days. If you need us sooner, call my office.

Of course, we have OpenNotes. If I get something wrong, let me know. I know a lot about drugs and therapeutics and how they affect groups of people. But, I don’t know anything about you. My job is to learn more about you, and we’ll test different drugs and therapeutics and see what works for you. You are an experiment of one.

Oh, you use acupuncture? You’ll have to educate me. I don’t know much about that. I’m interested in anything that helps my patients. Seems like everything works for someone. And by the way, how’d I do? We could have some fun together.’
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How many words for pain?

There are 46 words for snow in Iceland. How many are there for physical pain in English? Googling synonyms: Suffering, aching, torture, throbbing, discomfort, ache, sore, throb, sting, twinge, shooting, irritation, tenderness… I recall sitting with my mom when she was dying of pancreatic cancer, trying to understand what her pain felt like. Ma, is it sharp, dull, aching, constant, ebbing and flowing?  The more descriptors I tried to come up with, the more frustrated she became with me.  No words worked for her. Yet she tried to describe it to the hospice nurse or doctor without success.  Granted, my mom was home bound and bedridden. She was past the place where function didn’t mattered. How does your pain affect your ability to socialize and work? The way I manage my annoying neurological pains is to get to know them intimately. Meditate on the pain. Sensation, location, travel, duration, what makes it better or worse…. It takes the edge off, helps me be less freaked out and I can manage with less medication. I find my professional team intrigued by my desire to describe it in such great detail. I’m a bit of a freak. Turns out that acupuncture and mindfulness help me enough with my short bursts of radiating neurological zapping down my limbs that I don’t need medication and my function isn’t disturbed.  I recommend that you read Rosalind Joffe’s blog this week, Can You Talk About Your Chronic Pain? Continue reading

Alone, we can do so little. Together, we can do so much

I taught this week at the Organization of Nurse Leaders’ Leadership Academy. My topic is Organizational Cultural – Change from Within. I love working with nurse leaders.  Those who supervise the front line in healthcare have the most difficult job in healthcare be they nurses, therapists, doctors, support staff or other direct care workers. So much responsibility without commensurate authority or resources. Two issues stood out working with this week’s group: They often say, but it’s outside of my control. And they often feel alone. Continue reading

Changing habits – for people and payers

I love my health team. They help me stay tuned up with my chronic challenges and they get me through unexpected crises. Still, I  see them way too often. 3-5 times a month and I’ve never been an inpatient. Professional contact is a drop in the pond of my health. The rest of the time (also known as my life) I set and track goals and habit changes. I have questions about my plans and treatments. I deal with changes in my life that affect my ability to do the work of habit change.  I network and I research. I worry and I celebrate. I have tools to help me that are largely disconnected from my health team. I track steps with my iPhone, my diet with MyFitnessPal, the support communities of MyTreatment and PatientsLikeMe.  I can communicate with some professionals via portals and can receive one way data via OpenNotes, also with some professionals. Continue reading

Disabled. Looking for Work. Reference

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.

Life Happens or Expecting the Unexpected

The New York Times Magazine has an article this week about flexibility at work. Since I am a person with a chronic illness and disability and have been a boss to many teams, it seems like a no brainer to support flexibility at work. In fact, life requires flexibility at work. If you give care to yourself or anyone of any age you need flexibility at work. This can range from a haircut to periodic hospital admissions.  I used to think that there couldn’t be flexibility if you worked on a shift, say in an ICU, when your absence would make it short-staffed and less safe.  But then my teams realized that if we expected to need flexibility then we could design the work and schedules to accommodate the unexpected.  Rather, the need for flexibility became the expected. In my first management job as a manager of an ICU I noticed that nurses didn’t stop for lunch, let alone take breaks or go to the bathroom. Crazy. We can design this work so we can take breaks!! This morphed into no one needs to be on call all the time and then, sure, you can go to your daughter’s recital.  We can figure this out. I found that when flexibility was expected and given, people stepped up to allow it to happen for each other.  No work was planned that required just one person, we always built-in redundancy and clear written descriptions so someone else could step in at a moment’s notice. Certainly, hiring the right people is critical. Flexibility doesn’t work if you don’t trust that everyone gives their all.  Do you avoid hiring people with disabilities, chronic conditions, or full of life because you’re worried about getting the job done? I hope not.