I know our collective political attention is focused on the presidential election at the moment, but the day to day acts of government and citizenship also deserve our attention. The Lyme community is mobilizing once again to try to pass legislation, which is very much needed. Please help. In the past, it has successfully passed legislation… Continue reading Help Pass Federal Legislation
In the last week, I have met or heard about three different cases of younger individuals who either died or were very ill with a combination of diseases that cause neurological and physical symptoms. I invariably have the same reaction in these cases - I think of Lyme disease and wonder whether they were properly… Continue reading Slipping between the cracks
Senators Kelly Ayotte (R-NH) and Richard Blumenthal (D-CT) have introduced the bipartisan Lyme and Tick-Borne Disease Prevention, Education and Research Act of 2015 (S. 1503). (from LymeDisease.org) This is a NATIONAL bill, folks, which means it potentially subsumes the need to pass these on a state by state basis and has a big impact. It would help countless people… Continue reading Re-Post: Ask your senators to co-sponsor Lyme disease bill (S. 1503)
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
Dear Lyme Youth, Hello, I am glad to have a chance to have “met” you online, or at least received notice from Julia that you want to join us. Thank you for getting involved. As I'm sure you all know, our cause is a crucial one. Every step we make towards advocacy and awareness builds… Continue reading RePost: Open Letter to Lyme Youth
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?