This blog is primarily about my journey to recover from PANDAS. In doing so, I hope to encourage others in the same fight while advocating for the recognition and treatment of the disease. But the only reason I found out I have PANDAS is the fact that a […]
I have not blogged in a year and a half. Why? There are several reasons. First, my son relapsed with his PANDAS after having strep in the winter of 2019. Writing about this chapter in our lives in real time was simply too painful. Second, I did […]
My executive function is a mess right now. Organizing thoughts, actions and objects creates a great deal of anxiety for me. One of the biggest challenges with a chronic condition and a reduced mental capacity is managing all of the medications. Some where in my past, I figured […]
I attended the Bay Area Lyme Foundation Lunch a few weeks ago. Since Lyme is the main driver in my PANDAS ( as far as we know at this point), I decided that education about Lyme was a good idea. I learned a lot, indeed! Here are […]
I copied and pasted this image from the National PANDAS Awareness Day Facebook page. Please check the page out for yourself at https://www.facebook.com/pandasawarenessday/
The stand-off lasted five stops on the L train last week. A kind gentlemen, seated in front of me, continued to offer me his seat, a request I continued to decline. I was content to stand for the duration of the trip. He mentioned something about the fear […]
I spoke on the phone earlier this week with Super Amy to learn about the infections (namely, lyme disease) that appear to be the underlying cause of my PANDAS symptoms. Yesterday, Dr. Rookie sent me the official email stating that my lumbar puncture (LP) results were completely normal […]
Lyme, which is the underlying infection causing my PANDAS, has an asterisk. No, there is not “really” an asterisk beside the word, “lyme,” in medical literature, test results, and so forth. But the asterisk exists in the minds of the medical establishment (i.e. the CDC, NIH, AMA, etc.) […]
It’s been over a week since I’ve had the lumbar puncture. I am waiting to hear back from the doctor to understand the outcomes of the tests. I am also waiting to learn more about the infections that inform my PANDAS diagnosis. So much for my sewing as […]
I had a lumbar puncture on Friday. (I’ve had mani-pedi’s that were far more painful.) The doctor who ordered the LP thinks my symptoms are psychological. In other words, he believes I think myself sick because of OCD. A different doctor, the one who performed the lumber puncture, proved to […]
