I was inspired to do this today. “A Thank You to 21 Pilots for ‘Migraine'”

They gave us, the chronically misunderstood and underestimated, an anthem. It is nearly anonymous across the community that “Migraine” has become our theme song and rallying cry. As I listened to it again this morning with tears streaming down my face, I felt inspired to reach out and thank them for speaking their pain (I actually don’t know which of them has migraine disease or if either of them does) which helps to decrease stigma; and also for presenting us with both security blanket and super hero cape for our darkest moments.


The Chicago Neurologist & My New Job

When the call came today, I was at my theatre group’s event downtown. It was a “business after hours,” I guess normally attended by the same working folks; I didn’t know most of them. I sat with my kids and “my” kids in the corner and dealt with a freaking out Zo and had to…


I think my fear of the phone stems from both my medical PTSD and my isolation at home. The fewer people I see on a daily basis, the less I seem to know how to interact with them, especially when caught off guard (why I never answer my phone). As far as calling someone, it is…

Advocate Fail

Why couldn’t I just have arranged the whole trip on my own? Just me, wearing my big girl pants (or skirt, usually) booking a flight, knowing I could hail a cab and get to the hotel on my own? Then, after the conference, get back to the airport and fly home. That is how all the other advocates do it. WHAT IS WRONG WITH ME?

So, things are bad and scary. I still have hope.

So I do feel sort of protected by the universe. I do feel that every little thing is gonna be alright. I believe that my appointment today is going to go great, and my headache threshold will continue to stay lower, and that Dr. Dafer will agree to see me, and that when erenumab is released I will have access to it, and we either will or won’t discover the cause of the neuropathy but who cares.

How will the Opioid Epidemic Affect YOU? Click here to find out!

Ha ha ha, the blogger types bitterly, with no laughter at all in her tone. Did you like that click-bait title? I disagree firmly with the term “epidemic” in reference to opiates considering how many people die in mass shootings (and NOTHING is done! Restrictions are loosening!); from alcohol; from car accidents; from cigarettes. I…

An Empty Shell of Me

I am a melancholy, drifting mermaid, bedded in soft seaweed, whose head has inexplicably been invaded by the Russian navy on one side.
The other half… dead.


I am angry. I want to have control over something. I want this insidious, ghostly malificent Medusa in my head rooted out like weeds, evil black viney strands pulled out one by one and left in a heap on the floor like hair at a beauty salon. I want the snakes neutralized.

Influenza Valentine

I’m a little… down. You know, that feeling in your core that alternates between emptiness, like nothing can fill it, and anxiety, like everything is bad. Since finally getting all the way off of Cymbalta and switching back to Zoloft, I rarely get very depressed anymore. Like the scary angry black hole kind where you…

Bulbous Basilar Bolstering

The reason I’m going with such a cringe-worthy title for this post is because I want all these entries to be easily distinguishable as a “story,” or thread with a beginning and end and therefore similar titles. This is the end. This purpose of this piece is to celebrate the extreme, positively overwhelming support I…

Not Bulbous Basilar but “Partial Voluming Artifact”

I’m sorry. I guess that’s the first thing I want to say. I’m sorry for scaring everyone so much. I’m sorry for getting defensive about people saying I shouldn’t freak out yet because “it could be nothing.” Because apparently, it was, exactly, nothing. I have written and re-written this entry in my head several times….

Bulbous Basilar ~ Pre-Results

T minus approximately 30 minutes. John got home. I don’t want to get to the records office and have them tell me it’s not there yet. My heart is pounding. The butterflies have spread up into my chest and shoulders. John told me of something else he’d thought of that it could be: the  white…