Re-calibrating – Finding Balance

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 … Continue reading

#CarePlanning – a Mission From God

My wife and I built a house together – the whole house, everything except drilling the well. While building, living and improving it over 5-6 years, we had a running argument about paneling. She hated it and I loved it. … Continue reading

Giving Thanks

I’m thankful for my superpower that I shared with my mother, Ruth, and son, Mike – accepting what is. I’m thankful that I was born a  white straight male to a closeted gay dad, Ruben, and a Holocaust survivor, Ruth … Continue reading

Health, Wellness, and Medical Decision Support, Wherever and with Whomever

When diagnosed with multiple sclerosis, I did little research. Here I was, a card carrying member of the research industrial complex heavily involved with the Patient-Centered Outcomes Research Institute (PCORI). I just couldn’t bring myself to Google MS.  I relied … Continue reading

The Thorny Thicket of Feedback and Advice

When I was diagnosed with MS, people came out of the woodwork with advice and feedback. I was so not receptive. When I talked with my neurologist about the advice, he said, everything works for someone. The challenge is figuring … Continue reading

Scared?

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 … Continue reading

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 … 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. … Continue reading

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 … 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 … Continue reading