For me, the work of maintaining best health with a chronic disease takes large parts of each day. I feel fortunate when the routine just flows without thinking. Like walking used to feel. I didn’t have to focus on each step I took. Now I scan for uneven pavement, pick up my left foot high enough not to trip, and check my fuel gauges: Have I reached my daily step limit? Has my medicine kicked in yet that helps my impaired nerves work so I can safely walk? Should I walk where ever I’m going or use the electric wheelchair or Lyft? I miss thoughtless walking. The process I use for managing and adjusting my self-care routine includes experimentation, tracking, journaling (journaling is narrative tracking), adjusting. I try to create a care plan for myself complete with goal and actions – project management. I use lists, spreadsheets, and iPhone/Apple Watch reminders to manage the plan and see how it’s working. Read More
Everyone makes decisions about managing pain sometime in their lives. Most people with chronic illness make repeated decisions about managing pain every day. Some people are fortunate to have strong relationships with trusted clinicians or care partners to share the decisions about managing pain. An alarming number of people have found themselves in a downward spiral of addiction to opioids first taken to manage their acute or chronic pain.
Greetings fellow patient/caregiver activists and advocates! I need your help to be successful in some work I’m doing to help people use information better in managing pain. This post takes two minutes to read. A couple of links might take 7 minutes to read. Thinking and responding…. If you can, please take the time. I’m part of this team and I have my own experience with pain management and decision-making. We need a wider reality check. That’s you. Thanks for all you do. Read More
We (patients and clinicians) need all the help we can get making informed health care decisions. We need the right information to the right person, in the right format, through the right channel, at the right time in our life flow and workflow – The five rights. Let’s take managing acute pain as an example. Clearly, we need to make some decisions together. I (the patient) am in pain for whatever reason – hurt my back, migraines, colitis, sickle cell, a million reasons. I (the clinician) need to help my patient manage that pain with the least long-term risk possible, e.g. relief with maximum function without addiction, constipation, confusion, whatever. This pain could be new – never had it before, or familiar – chronic (we have experience with what works and what doesn’t). Clinical decision support can help us to structure and inform a routine to make choices based on research and clinical and life experience. What has worked for groups of people (those with acute back pain, migraines, colitis, sickle cell) and what has worked for the individual (me or my patient)? We can welcome this decision support when symptoms first occur, when the patient and clinician first communicate, when they first meet about the symptoms, or as we try treatments until the pain goes away or is manageable – anytime from first pain to living with pain to no pain. Read More
When I watch the camera scan a crowd (sports event, political rally) or I’m on the T (subway) I pick someone out and wonder, What’s their backstories? Where do they live? Do they like being where they are right now? What ailments do they suffer from? Are they chronically ill? I’m either curious or nosey, maybe both.
A common theme in chronic illness social media is the frequent invisibility of chronic illness. You don’t look sick! When I see someone with a visible disability, I wonder if they have a cold, a stomach ache, or recently stubbed their toe? People with chronic illnesses get sick, too. As my Primary Care doc says, your specialists help you manage your multiple sclerosis, I help you manage the rest of you. You’re still a 65-year old white man with high cholesterol, a prostate, a heartburn. You can get sick just like anyone else. Read More
Fibro Mama: Pregnancy and Fibromyalgia by Melissa Reynolds
Odd, isn’t it? A book review about pregnancy and pain by a guy! Well, I’m a dad, an Opa (grandpa), registered nurse, and a patient activist. I have Multiple Sclerosis and I know chronic illness and pain management. We had home births with a midwife at one and no midwife at another. Enough about me. I’m reviewing the book because Melissa asked me to. Thanks, Melissa.
Look, no one knows someone else’s experience, it belongs to them. As Melissa says in her introduction, “I can give you tips about what worked for me. … However, in the end, it’s you putting one foot in front of the other. That’s how we live, right?”
Lived experience and a dollar fifty will buy you a Pepsi. Lived experience + self-awareness + systems thinking + good storytelling is golden. Add brevity and it’s priceless. Melissa’s book is priceless. Took me half an hour to read it through once. I marked it up and spent a couple of hours reading it again. Here are the best parts (for me, a guy, who will never be pregnant):
- 16 natural pain relief suggestions – I use many of these myself for muscle tension and cramping. Great list. I never tried oils. I may.
- The sections about the three trimesters, immediately post-delivery, and the first 6 weeks all include sleep, exercise, meditation, and a pain management plan. They’re basic and vital. She lays it out for you.
- I can’t evaluate the extensive section on nursing except to say that it’s comprehensive and empowering. I always love the response, “there is no wrong choice”.
- Using help is big, really big. Melissa has a great care partner. She says to insist that s/he/they be allowed to be with you 24/7 whenever you’re a guest in an institution. Absolutely. Pregnant or not pregnant, fibromyalgia or no fibromyalgia, this is true.
- Last, but so not least – Tips to Cope with a Fussy Baby When You’re Sore. She’s buying minutes for you. Dad’s too.
Thanks for the opportunity to review this fine book. You can get it here.