It's been about 2 years now since I had a major relapse (meaning weeks and weeks of more severe symptoms). This is huge -- it means that I am willing to take risks like signing up for a work trip, taking on something larger at work, and being more responsible for things at home without a… Continue reading Life without major relapses
I've decided it's time for an (admittedly tongue in cheek) exploration of my emotional reaction to relapse. Tongue in cheek not only because I'm comparing to a very well known model normally called "The five stages of grief" but also because the evidence suggests that that model is a poor representation of what really happens to… Continue reading The four stages of relapse
I happened upon a nice blog post recently -- 11 tips I've learned from 11 years sick by Toni Bernhard, JD. Here's a nice quote: I’ve discovered that it’s okay to feel emotions that appear to contradict each other.... [I can] be terribly disappointed but content with my life at the same time. My current disappointment… Continue reading [Link out] How to be sick
First some news -- I am happy to say that I am no longer suffering from constant headaches, have less dizziness, am not totally soaked when I wake up (though still sweaty) and generally seem to be improving. I still tend to need either an early bed time or a nap or both and have… Continue reading Feeling better and a few firsts
I have to admit ... there is a reason I don't post as often: my motivation for posting on this blog for many years was the need to tell my story, reflect on my experiences, and (hopefully) help others in the process. As I've gotten better, the urge to post has gone down (aside from… Continue reading Raising Awareness
I have been working toward this for two years now, and I can finally talk about the work we've done with the help of many volunteers. My paper, "Competing Online Viewpoints and Models of Chronic Illness" will be published at the premier venue in my field, the 2011 conference on Computer Human Interaction. For those of you… Continue reading How does all that misinformation online affect Lymies?
I am reading an ethnography  right now written by a woman who was misdiagnosed with fibromalgia. She discusses the way in which her doctors' view of her and her symptoms defined (and destroyed) 8 months of her life. In the end, she is "saved" by a doctor who argues for the role of culture,… Continue reading Biology or Behavior?