When he took disability leave at the end of 2013 we thought he’d never work again.
At that time, he was taking 6-8 hydromorphone painkillers a day, as well as a high dose of Methotrexate by injection weekly.
He had developed severe and disabling nausea that no one could diagnose.
Now, the pain and nausea are manageable and he is medication-free, except for a few Tylenol Arthritis a week.
That sounds dramatic, and it is, but there were many times during the past 28 months when his health didn’t seem to be improving at all. And times when it was definitely getting worse rather than better.
But all of his autoimmune symptoms have gradually improved, and he is now in better health than he has been in eight years.
Back to Work
We honestly weren’t sure how the back-to-work experiment would go.
When he initiated it, he was partially bluffing. Read More
Many people who improve their autoimmune symptoms want to share what they have learned, so others can benefit too.
Most people just start a blog.
Vivek Mandan is creating Autoimmune Citizen Science, a free site that will enable anyone with an autoimmune condition to track personalized data to support their healing process.
Vivek and his team are looking for testers for the beta launch of their site this Spring. I’ve already signed up. Anyone else who is interested in the potential of measurement as part of their recovery will want to scoot over to Autoimmune Citizen Science to sign up as a beta user, too.
Consider this post to be your personal invitation from Vivek!
This month, I interviewed Vivek, who is 24 and lives in Ohio, USA, to find out more about his experience with autoimmune disease and about his vision for how Autoimmune Citizen Science could change the way we research and treat complex chronic health conditions. Read More
I get them. Big intellectual crushes. On people who are doing really innovative work in the field of measurement.
I have a long-standing crush on Michael Quinn Patton, originator of Developmental Evaluation.
My new crush is Dr Skye Barbic, who has created the Personal Recovery Outcome Measure (PROM). I spend a blissful hour and half this week learning all about it.
The PROM questionnaire is designed for people who are recovering from mental illness. But it can be used by everyone.
In fact, I think it should be used by everyone.
The World Health Organization (WHO) defines mental health as “a state of well-being in which every individual realizes his or her own potential, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to her or his community.”
Clearly we don’t need to be recovering from a debilitating mental illness to be pursuing improved mental health. In fact, the WHO definition for mental health could be the definition for purpose in life.
The PROM questionnaire is designed to help anyone realize their potential and cope with stress. Read More