Life without major relapses

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 …

The four stages of relapse

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 …

[Link out] How to be sick

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 …

Feeling better and a few firsts

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 …

Raising Awareness

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 …

How does all that misinformation online affect Lymies?

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 …

Biology or Behavior?

I am reading an ethnography [1] 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, …

… and then there were three

I received the news a few weeks ago that my daughter also has lyme disease. Her Igenex labs (Western Blot) were clearly positive, where they had previously been indeterminate. For my son and I, this was never an issue, and so I hadn't read up on it much before (though I was familiar with the …

Getting off the banks

For years now, I have been (on and off) on the bank, resting among the soft moss and watching the river go by. I stepped to the side for a few months when each child was born, and again for longer as my illness progressed. I'm not sure just when it happened, but I no …

June already!

I've been meaning to write a post (and answer comments) for a long time now, and life keeps getting in the way. I suppose that's a good thing -- I'm busy because I can be. On the other hand, I'm also busy because I still need more sleep and time to care for myself than …