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 …

Training a service dog

I had my first session with a private dog trainer to explore what Gryffin could do to be of help to me. I have my work cut out for me! Here's what we discussed: Retrieving things: Gryffin could help pick things up and bring them to me when I need them. One of the most …

Disability Accommodations?

I have spent the past two weeks exploring what it means to work with Lyme disease from a new perspective. I've blogged before about why I think it's valuable to view Lyme disease through the lense of disability. I've also blogged extensively about work and Lyme disease. However, I've never really put the two together. …

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 …

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 …

Personal limits

Not a lot phases me and I generally don't care how people judge me, my clothing, my cane, and many other things ... But a few things, I've discovered I am very sensitive about. Some I have been lucky enough to avoid (such as using a wheelchair -- I decided not to get one, but exploring …

Are you disabled?

People with disabilities are a unique minority, a group that any of us can join at any time. I first identified with the group as a graduate student in the 90s when my hands were so non-functional that I had trouble doing many basic things ...  and no one could tell me if/when I would …

Managing Lyme’s Unpredictability

One of the most frustrating things about this illness is the unpredictable nature of its flare-ups. Even without flare-ups, the illness is unpredictable: one month I am dizzy each time I stand up, almost to the point of blacking out, the next I have to wear sunglasses and a hat indoors if the lights are …

Dreaming of change…

It's been an interesting week. It started with a dream ... my doctor called to tell me I needed a major surgery. My overriding emotion was joy -- the doctor was going to open up my chest and clean it out, and then I would be cured. I couldn't find Anind, wasn't prepared, spent the …

Up and down, up and down

It's been a while since I made an entry in this blog, though I often think of things I'd like to write about. A big reason for this is that I've been trying very hard to return to my working life (somewhat unsuccessfully). As a result I cut out from my day everything that isn't …