‘Being tested by a ruthless examiner’

I had to go to the ER last night for the first time in 3 months with the worst pain I’ve had since my hospitalization last year. You can see how red and abraded my forehead is from heating pad burns and John’s tapping technique and my literally hitting it over and over with a…

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…

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.

Torrential

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.

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….

Aneurysm~ Headstory

You know…. like instead of “backstory”? ha ha. My stressful week of appointments did not happen the way I thought it would. My insurance, Medical Mutual through John’s employment, kicked in on January 1 and so I had a lot of things scheduled right away, and they ended up being all in a row on…

Bulbous Basilar

I have a possible small aneurysm. I am a writer, I write, and I found myself posting long emotional diatribes on social media, particularly Instagram. X is now on Instagram. Her friends are on Instagram, all my theatre kids whom I love like family, and I realized that I could be terrifying them and making…

Dear Hospital CEO: a letter finally sent

Last year on March 1, I had an unexpected and devastating visit with the DO who had taken over as my primary care physician. She had done a lot for me: set up my first mammogram, referred me to an amazing pain specialist, and while I was in a CGRP study prescribed the other migraine…

Flashback Friday

I stayed in bed all morning. Yesterday I had to give myself a Sumatriptan injection first thing; the morning before I’d needed to take a tablet. No migraine this morning, but maybe postdrome. In a sort of desultory way I scrolled through Facebook. I don’t always check my “On This Day” memories, but I did,…

Traumatic Birth: Life After Near-Death (Updated)

They took her. I was cut open and hastily re-stitched; paralyzed by a spinal block; bags of my own blood prepared and ready to transfuse if necessary, though apparently the physical danger to me was now over. The operating room was cold and sterile, glints of hard stainless steel, no friendly faces. My kind and…