Whoever decided that RA “progressing” means it gets worse probably didn’t have RA.
RA progress is always bad
I have a new symptom in both my hands today. When I try to hold onto something firmly, my hands cramp in pain and contort to an odd position. And I drop the whatever. This morning, it was an umbrella.
My feet have done this for years, but I’m not usually trying to hold an umbrella with them.
The foot cramping increased a lot over the last couple of years so I asked the Dr. Smart Rheum about it last year. Doc said, “We see that in a lot of our RA patients. There’s nothing that helps it.”
Tonight I had to color my hair. Kim, the super-hero hair dresser, has been out sick, busy with her new baby, and too much in demand. My fingers were pretty angry about my persistence to get this accomplished. This new symptom is going to progress from annoying to exasperating very quickly.
Meanwhile, a different kind of progress is made
While I was fighting with my hands about my hair, I entertained my brain by listening to a British Medical Journal podcast about “Shared decision making” in healthcare. It was electrifying to hear experts debate the most effective ways to involve patients in decisions about their health. In Part 3, ePatient Dave deBronkart used me and my “Mother of a Patient Voice” illustration. It was cool to hear my name, but all three podcasts were intriguing.
The discussion was sparked by the Salzburg Statement, a call to action by 58 experts from 18 countries. Check out the ePatients.net post explaining the Salzburg Statement on Shared Decision Making: “The pivotal distinction here is the difference between informed consent, in which the physician assesses the options and selects one, and gets your consent to do it; and informed choice, in which clinicians tell you the options, with all the pros and cons, and let you choose, based on your preferences.”
NOTE: Some of you on Facebook or Twitter listened with me yesterday (Monday) to the live broadcasts from the Netherlands of the TEDxMaastricht international conference on the future of health. American e-patient advocate Dave deBronkart spoke around the theme “Let Patients Help,” using RA Warrior’s bone scan as an example. I’ll add the link here to the video when it’s available. Don’t miss it – Dave raps!
- How we’re trained against Patient Assertiveness
- Mother of a Patient voice: How Much Does Patient Testimony Matter?
- On my hairdresser: Tony Snow: Illness Doesn’t Change the Person You Are