Liberating Constraints

Somebody asked me a few days ago, how I am able to live with and accept the impact of Lyme disease on my life. The resulting conversation helped me achieve a new understanding of what it means to live with a chronic condition. Because Lyme disease is potentially curable, I find myself living with constant …

IDSA fails the test

Editorial note: I posted the content below but forgot to discuss the implications. Here goes: The restrictive guidelines for diagnosis and treatment of Lyme disease published by the IDSA (Infectious Disease Society of America)  have caused some doctors and insurance companies to restrict the treatment options available to patients. There is enough evidence that these …

Brain Fog

My brain is back in that space where it almost hurts to think. When I work, normally, it's as if I've projected everything I'm keeping in play out into space around me. I move around in that space, project the future, translate from code to action or visuals, and otherwise manipulate information in my head …

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 …

Patient Stories

I've mentioned once or twice on this blog that I'm starting to do research in Lyme disease. I had presented very early versions of this work at ILADS 2009 (in an open forum) but Sunday was my first opportunity to present it formally, in the context of a research workshop called the Workshop on Interactive …

Fear of falling

Things have been going incredibly well since I stopped my medication in October. However, I've always thought of myself as "in remission" and tried to act accordingly (protecting at least some of my healthiest habits). Despite that, the call of a job I love, the needs of my children, and time have slowly eroded these …

So sensitive…

My daughter is four, and she is a puzzle to me. She has always seemed so strong, so robust, so determined, so healthy (unlike my son). Yet she also shared the repeated summer time flu and frequent sickness of my son up through January of 2009, after which her health was excellent. Despite this, to …

Loss and Control

In the past couple of months, I've had to make an unexpected transition, from patient to caregiver. As a caregiver, I am faced with all the uncertainties I faced as a patient, and the additional responsibility of asking an innocent to step into the unknown with me. He has placed his trust in me completely, …

Storms and fevers

My son had one of his most difficult days in weeks today. He had a doctors visit, which he physically fought to avoid, followed by the realization that he will need bloodwork tomorrow and monthly afterwards. At the doctor's office he heard that he has something else wrong with him -- Lead -- that will …

Finding a doctor

Once we figured out that my son had probably been exposed to lyme disease, my first step was finding a doctor who could confirm my layperson's diagnosis and help us determine how to treat him. I felt a sense of urgency because I was worried about the 18 month lag in treatment (minimum) and the …